kirsten baird-bate ba bus. comms. post grad dip. early ... · making visible the lived experiences...

MAKING VISIBLE THE LIVED EXPERIENCES OF MOTHERS OF

CHILDREN WITH AUTISM SPECTRUM DISORDER

Kirsten Baird-Bate BA Bus. Comms. Post Grad Dip. Early Years Education.

Submitted in fulfilment of the requirements for the degree of

Masters of Education (Research)

Faculty of Education

Queensland University of Technology

2019

Making Visible the Lived Experiences of Mothers of Children with Autism Spectrum Disorder i

Keywords

autism spectrum disorder (ASD), caregiving, lived experiences, meaning-making,

mothers, photography, photographic journaling, reflective practice, reflective tools,

resilience, Visual Narrative Inquiry, qualitative research, The Arts, wellness.

ii Making Visible the Lived Experiences of Mothers of Children with Autism Spectrum Disorder

Abstract

Purpose: This research explored the lived experiences of mothers of children with

autism spectrum disorder (ASD) and the effectiveness of photographic journaling as a

reflective tool.

Methods: Five mothers of children with ASD participated in this visual narrative

study, each capturing daily photographs and engaging in a semi-structure interview.

Both photographic and narrative data were thematically analysed. This is the first time

this methodological approach has been used with this group.

Results: Child health/behaviour significantly influenced the maternal lived experience

within the family; external systems; and the mothers’ own experience of wellness.

Although maternal vulnerabilities were prevalent, the mothers showed agency.

Nuanced insights from this research contribute towards understanding of ASD,

provide strength-based perspectives on caregiving, and highlight the importance of

family-centric policies.

Making Visible the Lived Experiences of Mothers of Children with Autism Spectrum Disorder iii

Table of Contents

Keywords ................................................................................................................................... i Abstract ..................................................................................................................................... ii Table of Contents .................................................................................................................... iii List of Figures .......................................................................................................................... vi List of Tables ........................................................................................................................... ix List of Abbreviations ................................................................................................................ x Statement of Original Authorship ........................................................................................... xi Acknowledgements ................................................................................................................ xii

Chapter 1: Introduction ....................................................................................... 1 1.1 Background .................................................................................................................... 2

1.1.1 Research Problem ................................................................................................ 2 1.1.2 Researcher standpoint .......................................................................................... 3

1.2 Context ........................................................................................................................... 6 1.2.1 Service, policy directions: National Disability Insurance Scheme (NDIS) ......... 6 1.2.2 Increasing rates of ASD ....................................................................................... 7 1.2.3 Service and policy directions: autism specific ..................................................... 8 1.2.4 Caregivers: Service and policy directions and the caring experience .................. 9 1.2.5 Strength based supports ..................................................................................... 10

1.3 Purpose ......................................................................................................................... 11 1.3.1 Research purpose ............................................................................................... 11 1.3.2 Research questions ............................................................................................. 11

1.4 Research Design ........................................................................................................... 11 1.5 Significance and Definitions ........................................................................................ 12

1.5.1 Significance ........................................................................................................ 12 1.5.2 Definitions .......................................................................................................... 13

1.6 Thesis Outline .............................................................................................................. 16 Chapter 2: Literature Review ........................................................................... 17 2.1 Autism Spectrum Disorder ........................................................................................... 18 2.2 ASD: Familial and Maternal Vulnerabilities ............................................................... 20

2.2.1 Familial vulnerabilities ...................................................................................... 20 2.2.1.1. Familial vulnerabilities: child behaviour ....................................................... 21 2.2.1.2. Familial vulnerabilities: compounding stressors ............................................ 23 2.2.2 Maternal vulnerabilities ..................................................................................... 24 2.2.2.1. The centrality of the mother ............................................................................ 24 2.2.2.2. Maternal vulnerabilities: child behaviour ...................................................... 25 2.2.2.3. Maternal vulnerabilities: caregiving demands and occupational and

leisure balance ................................................................................................... 26 2.3 ASD: Maternal Wellness .............................................................................................. 28

2.3.1 Understanding maternal wellness ...................................................................... 28 2.3.1.1. Defining wellness ............................................................................................ 28 2.3.1.2. The importance of positive accounts and a balanced approach ..................... 29 2.3.2 Personality traits contributing to maternal wellness .......................................... 29 2.3.2.1. Self-efficacy ..................................................................................................... 29

iv Making Visible the Lived Experiences of Mothers of Children with Autism Spectrum Disorder

2.3.2.2. Resilience ......................................................................................................... 31 2.3.3 Meaning making: A cognitive process contributing to maternal wellness ........ 34

2.4 ASD: Lived Experiences .............................................................................................. 36 2.5 The Arts: Meaning Making. Reflection. Expression .................................................... 38

2.5.1 ASD, meaning making, and The Arts ................................................................ 38 2.5.2 The Arts as a meaning making process .............................................................. 38 2.5.3 ASD: The Arts and research ............................................................................... 39

2.6 Chapter Summary ......................................................................................................... 40

Chapter 3: Research Design .............................................................................. 43 3.1 Introduction and Chapter Organisation ........................................................................ 43 3.2 Research Methodology ................................................................................................. 44

3.2.1 Qualitative research ............................................................................................ 45 3.2.2 Narrative inquiry ................................................................................................ 46 3.2.3 The Arts in research ........................................................................................... 47 3.2.4 Photography in research ..................................................................................... 47 3.2.5 Visual Narrative Inquiry ..................................................................................... 49

3.3 Instruments: Photography as a Research and Reflective Tool ..................................... 49 3.3.1 Photography as a research tool ........................................................................... 50 3.3.2. Photography as a reflective tool ......................................................................... 51 3.3.2.2 Reflective tools and ASD .................................................................................. 53

3.4 Research Design ........................................................................................................... 54 3.4.1 Restatement of research purpose and questions ................................................. 54 3.4.2 Research paradigm: Participatory ...................................................................... 54 3.4.3 Key research design considerations ................................................................... 55 3.4.4 Procedures and timeline ..................................................................................... 56

3.5 Ethics ............................................................................................................................ 58 3.5.1 Informed consent ................................................................................................ 59 3.5.2 Management of data ........................................................................................... 59

3.6 Partcipants ..................................................................................................................... 60 3.6.1 Selection criteria ................................................................................................. 60 3.6.2 Recruitment ........................................................................................................ 61 3.6.3 Participant sample .............................................................................................. 62

3.7 Data Collection Techniques .......................................................................................... 63 3.7.1 Photographic journaling ..................................................................................... 63 3.7.2 Semi-structured interviews ................................................................................. 64 3.7.3 Data checking and final reflections .................................................................... 65

3.8 Data Analysis ................................................................................................................ 65 3.9 Trustworthiness ............................................................................................................. 73 3.10 Chapter Summary ......................................................................................................... 76

Chapter 4: Findings & Discussion .................................................................... 77 4.1 Overview of Thematic Findings ................................................................................... 77 4.2 Maternal Lived Experiences of Child Health/Behaviour ............................................. 83

4.2.1 Maternal understanding - aggressive child health/behaviours ........................... 84 4.2.2 Maternal response – complex and constant child health/behaviours ................. 87

4.3 Maternal Lived Experiences within Family and Home ................................................ 93 4.3.1 Caring for other children (siblings) .................................................................... 95 4.3.2 Marital relationships ......................................................................................... 100 4.3.3 Family dynamics and functionality .................................................................. 103

Making Visible the Lived Experiences of Mothers of Children with Autism Spectrum Disorder v

4.3.4 The home environment .................................................................................... 108 4.4 Maternal Experiences with External Systems ............................................................ 113

4.4.1 Education ......................................................................................................... 114 4.4.2 Healthcare systems and services ...................................................................... 118 4.4.3 Community ...................................................................................................... 123

4.5 Maternal Experiences of Wellness ............................................................................. 126 4.5.1 Mothers physical, mental, emotional health .................................................... 127 4.5.2 Maternal experiences of respite ....................................................................... 131 4.5.3 Intrinsic coping strategies ................................................................................ 132 4.5.4 Occupational engagement ................................................................................ 136

4.6 Maternal Use of Photographic Journaling as a Reflective Tool ................................. 141 4.6.1 Storytelling ....................................................................................................... 142 4.6.2 Meaning making .............................................................................................. 143 4.6.3 Happy snaps and keep sakes ............................................................................ 144 4.6.4 Moments of respite .......................................................................................... 146 4.6.5 Innovative communication and relational tool ................................................ 148

4.7 Chapter Summary ....................................................................................................... 150

Chapter 5: Conclusions .................................................................................... 151 5.1 Introduction ................................................................................................................ 151 5.2 Summary of Key findings .......................................................................................... 152

5.2.1 Contextualising contributions of the study ...................................................... 152 5.2.2 Influencer theme: Child health/behaviour ....................................................... 154 5.2.3 Central theme 1: Familial wellness and home ................................................. 155 5.2.4 Central theme 2: Maternal experiences with external systems ........................ 158 5.2.5 Central theme 3: Maternal wellness ................................................................. 160 5.2.6 Key findings in response to research question 2 .............................................. 164

5.3 Implications ................................................................................................................ 166 5.3.1 Policy implications ........................................................................................... 166 5.3.2 Practice Implications ........................................................................................ 167 5.3.3 Implications for carers ..................................................................................... 170

5.4 Summary of Key Recommendations .......................................................................... 171 5.5 Limitations ................................................................................................................. 174 5.6 Future Research .......................................................................................................... 175 5.7 Conclusion .................................................................................................................. 176

Reference List ......................................................................................................... 179

Appendices .............................................................................................................. 195

vi Making Visible the Lived Experiences of Mothers of Children with Autism Spectrum Disorder

List of Figures

Figure 3.1. Snapshot of spreadsheet which enabled methodical review and coding of data, working column to column, left to right, image to image. ........................................................................................................... 69

Figure 3.2. Example of the colour code applied to the narrative data, interview transcripts and image captions. ..................................................................... 70

Figure 3.3. Tracing the entangled relationships between codes was the key to theme development. Mud map showing thematic map. ............................... 71

Figure 3.4. Photograph capturing part the Phase 4 review process; potential themes were reviewed against each maternal story and across the full data set. ......................................................................................................... 72

Figure 4.1. Visual representation of thematic findings. ............................................. 78

Figure 4.2. (P2). The mother used this image to represent her experience of, and response to, an upsetting incident involving her child. ......................... 84

Figure 4.3. (L) (P2). “Just after this photo she undid her seatbelt and climbed over the front seat kicking me in the head while doing so.” ........................ 86

Figure 4.4. (R) (P2). The mother was “ready to pounce, should [Child] undo her seatbelt, which she does every time….” ................................................. 86

Figure 4.5. (P1). “That morning he had trashed his room. Absolutely trashed it… put holes in the wall… And I thought, I’ve got to take a photo of this, because, you know, it’s extreme. Extreme parenting.” ........................ 86

Figure 4.6. (P1). Child smiles as male support worker puts on shoes, ready to go out. ........................................................................................................... 90

Figure 4.7. (P3). Shows two of her three children at a day out at the Aquarium. ...... 91

Figure 4.8. (P3). Shows two of her three children engaged, at home, with Lego. ..... 91

Figure 4.9. (P3). Her son has an enraged response to seeing family members eat meat. This incident led the mother to enact a range of supports. ........... 92

Figure 4.10. (P3). “Now our son is ‘triggered’ by the sight of meat, we are exploring vegetarian options more often. Anything to make another day easier on everyone.” ............................................................................... 92

Figure 4.11. (P3). “7-year-old is away at grandparents for the night, so we had a roast lamb without fear of retribution. It was delicious.” .......................... 92

Figure 4.12. (P3). “Waiting in the waiting room for my son to be done with his therapy appointment.” .................................................................................. 92

Figure 4.13. (P1). The mother tells of time spent on a day of respite: “We had a few hours off and I took [Daughter] to a country fair, it was perfect for her age group.” ............................................................................................. 98

Figure 4.14. (P1). Participant’s eldest daughter cares for the child. .......................... 99 Figure 4.15. (P3). “Overall a successful and busy day taking all three kids up

the coast to visit friends. Everyone held it together and we were able to enjoy ourselves. It comes at a cost though … 7year old was so

Making Visible the Lived Experiences of Mothers of Children with Autism Spectrum Disorder vii

agitated that it took him to 10.10pm to finally settle off to sleep … and now for dinner.” ......................................................................................... 104

Figure 4.16. (P5). The mother is an avid traveller and the family are planning another trip together overseas. She shares that the child also loves to travel. .......................................................................................................... 105

Figure 4.17. (P2). “Husband and son on a holiday at Uluru this week …” The mother stayed home to care for the child with ASD. ................................. 105

Figure 4.18. (P4). Image showing mother spending time with her children at a local attraction. She is wishing to spend more time together as a family. ........................................................................................................ 107

Figure 4.19. (P1) (L). The mother took the image of a mop bucket to illustrate the significant impact incontinence, and continued clean up, has on her daily experience. .................................................................................. 109

Figure 4.20. (P1) (R). Image of child taken after he had headbutted the table several times before pushing it over. The mother took the image to illustrate the intensity of care demands. ..................................................... 109

Figure 4.21. (P1) (L). Child in backyard. Mother set up buckets of foil paper, around the house and in the yard, for the child as chewing the foil helps him self-soothe. ................................................................................. 110

Figure 4.22. (P1) (R). Mother’s recorder and keyboard. ASD has restricted engagement beyond the home yet has also opened up new, musical, avenues. ...................................................................................................... 110

Figure 4.23. (P2). “Hallelujah! We have finished tiling [Child’s] bedroom! So much easier to clean up the poo and other messes.” .................................. 110

Figure 4.24. (P5). “Keeping [Child] busy!” ............................................................. 111

Figure 4.25. “ASD Princess in her element!” .......................................................... 111

Figure 4.26. (P4). Excitement over new home. ....................................................... 112 Figure 4.27. (P4). NDIS paperwork. This participant has found it challenging

and stressful to secure services for her children. Her frustrations have led her to advocate Members of Parliament. .............................................. 119

Figure 4.28. (P1). Child with support worker. The NDIS had delivered positive changes for the family, yet, a lack of respite services represented a significant issue. ......................................................................................... 120

Figure 4.29. (P5). “Having a child with ASD is lots of advocating & paperwork.” ................................................................................................ 122

Figure 4.30. (P5). “Cold tea and empty lolly jar.” Both annotated images represented the time and stress involved with NDIS. ................................ 122

Figure 4.31. (P2): “Living in the space between her needs vs. societal pressures.” .................................................................................................. 124

Figure 4.32. (P5). “The bittersweet medications.” ................................................... 127

Figure 4.33. (P4). Steamer in bedroom. ................................................................... 128

Figure 4.34. (P4). Cough mixture and chicken soup. A number of this mother’s photographs evidenced deteriorated maternal health. ................................ 128

viii Making Visible the Lived Experiences of Mothers of Children with Autism Spectrum Disorder

Figure 4.35. (P2). “Juggling like a mad woman! Always!” ..................................... 129

Figure 4.36. (P3). “10.03pm – And finally dinner time. Last kid just gone to sleep.” ......................................................................................................... 129

Figure 4.37. (P4). Mother set up whiteboard to busy her children while she worked. ....................................................................................................... 129

Figure 4.38. (P4). Monthly schedule illustrating how busy she is. .......................... 129

Figure 4.39. (P2). “Years of constant sleep deprivation and high stress have taken their toll on my cognitive abilities. Forgetting how to spell basic words, slower processing time … Health is so important.” ....................... 130

Figure 4.40. (P4). “Freedom!” Mother shows a night out with a friend. ................. 131

Figure 4.41. “A moment of stillness.” An opportune moment of respite. ............... 131 Figure 4.42. (P5). “Fresh air.” A moment in the sunshine invited feelings of

reprieve, optimism, and reframing. ............................................................ 132

Figure 4.43. (P5). Flowers from her garden. ............................................................ 133

Figure 4.44. (P5). Flowers given to her as a birthday gift. Flowers represent happiness to the mother. ............................................................................. 133

Figure 4.45. (P3). “Heading off bright and early to a work conference in the city. This was my favourite part of the day.” ............................................ 138

Figure 4.46. (P3). “My day away from home at work. The boss took the staff out for a Vivid cruise. It was such a lovely thing to do.” ........................... 138

Figure 4.47. (P1). Continence suit left behind after the child left for school. Mother had to race to get this up to the school. The image was “symbolic” of her ongoing problems with the school. ............................... 143

Figure 4.48. (P1). Child’s writing. ........................................................................... 145 Figure 4.49. (P1). Child’s bags packed, at door, ready to take on overnight

respite. ........................................................................................................ 146 Figure 4.50. (P1). Child’s bedroom clean and restored after an aggressive

incident. The photographs were a storied collection. ................................. 146

Figure 4.51. (P1). “Hot lemon & honey and a book. Ahhh... ” ............................ 147

Figure 4.52. (P1). Child smiles at the camera for the first time ever. Image evidenced the use of photographic journaling as a communication and relational tool. ............................................................................................. 148

Figure 4.53. (P3) Mother and son spent time together, playing with photographic images. Image evidenced the use of photographic journaling as a relational tool. .................................................................... 149

Making Visible the Lived Experiences of Mothers of Children with Autism Spectrum Disorder ix

List of Tables

Table 1.1 Key Terms and Definitions ......................................................................... 13

Table 3.1 Procedure and Timeline for Study .............................................................. 57

Table 3.2 Summary of Recruitment Process ............................................................... 61

Table 3.3 Summary of Participant Codes and Demographic Data of Maternal Participants .................................................................................................. 63

Table 3.4 Braun & Clarke’s (2006) Six-Phase Thematic Analysis ............................ 66

Table 4.1. Central Theme Definitions ........................................................................ 79

x Making Visible the Lived Experiences of Mothers of Children with Autism Spectrum Disorder

List of Abbreviations

ABS Australian Bureau of Statistics

ADHD Attention Deficit Hyperactivity Disorder

ASD Autism spectrum disorder

CDC Centre of Disease and Control (United States)

CWDS Child with Down Syndrome

NDIA National Disability Insurance Agency

NDIS National Disability Insurance Scheme

QUT Queensland University of Technology

WHO the World Health Organisation

Making Visible the Lived Experiences of Mothers of Children with Autism Spectrum Disorder xi

Statement of Original Authorship

The work contained in this thesis has not been previously submitted to meet

requirements for an award at this or any other higher education institution. To the best

of my knowledge and belief, the thesis contains no material previously published or

written by another person except where due reference is made.

Signature: _________________________

Date: _________________________

QUT Verified Signature

Kirsten Baird-Bate

23 April, 2019

xii Making Visible the Lived Experiences of Mothers of Children with Autism Spectrum Disorder

Acknowledgements

I would like to thank my supervisory team, Dr Lyndal O’Gorman and Associate

Professor Beth Saggers, for mentoring me over the past number of years. I genuinely

appreciate your belief in the project and all the feedback, encouragement, and support

you have provided. I have learnt so much on this journey and I feel so grateful for the

experience. Thank you. I also wish to acknowledge the QUT review panel members;

Professor Suzanne Carrington; Dr Amanda McFadden; Dr Kate Williams and Dr

Denise Beutel for providing me with invaluable feedback and helping me to develop

this project.

To my beautiful family, thank for supporting me throughout this Masters

process. Stu-Bate, I could not have done this without you! Fin, Akir and Esther, thank

you kids for all your patience, I love you guys!

I would like to take this opportunity to acknowledge the work of peak

organisations such as Carers Australia and Carers NSW. These organisations are

invaluable in supporting individual carers and instrumental in progressing carer issues

and inform policy change. Lastly, I wish to acknowledge all the mothers, families and

children with ASD; you are my inspiration for this project. In particular, thank you to

the five mothers who bravely shared their lived experiences. Ladies, your stories of

strength are an inspiration and will always remain in my heart. Thank you.

Chapter 1: Introduction 1

Chapter 1: Introduction

This research explores the lived experiences of mothers of children diagnosed

with an autism spectrum disorder (ASD) and their use of photographic journaling as a

reflective tool. Raising a child with ASD is complex and mothers of children on the

autism spectrum are generally considered at increased risk of higher levels of

psychological and physical stress and mental health issues (Bishop, Richler, Cain &

Lord, 2007; Ekas & Whitman, 2010; Hastings & Brown, 2002; Savage & Bailey,

2004). While some mothers associate caregiving their child with ASD with feelings of

wellness (Bayat, 2007; Green 2007; Hoefman, et al., 2014; Myers, Mackintosh, Goin-

Kochel 2009; Pakenham, Sofronoff, Samios, 2004). Gaining insight into the variances

and realities of mothers’ experiences is a first step toward developing effective policy

and services to support not only children with ASD but also their families.

Qualitative research using arts-inspired methodologies is beginning to gain

traction and its popularity stems from The Arts’ innate potential for meaning making,

expression, and reflection (Knowles & Coles, 2008; Langmann & Pick, 2018;

Plummer, 2015; Weber, 2008). In this study, photography acted as a research and a

reflective tool. Visual Narrative Inquiry afforded the latitude necessary to reflect the

nuanced realities and emotions which punctuated the participants’ caregiver journey.

An extensive database search confirms this is the first time this methodology has been

used with this group.

This chapter begins by articulating the research problem and my own experience

of mothering a child on the autism spectrum before framing the socio-political context

of this study. The context is broadly revealed though a discussion of current disability

reform in Australia which centres on the National Disability Insurance Scheme

(NDIS). This shifting policy landscape impacts both individuals with a disability and

caregivers and set a backdrop for the study. A more specific discussion of autism

spectrum disorder (ASD) in relation to current policy and services and the increasing

prevalence rates of ASD follows. Importantly, this section discusses

recommendations and future directions for research, policy, and service provisions

which is necessary to appreciate the potential contribution of this study. The research

purpose, questions, design, and significance of this study are presented before the

chapter concludes with an outline of the remaining thesis document.

2 Chapter 1: Introduction

1.1 BACKGROUND

1.1.1 Research Problem

This study is about the lived experiences of mothers who are caring for a child

on the autism spectrum. The autism spectrum is defined as a lifelong, complex

neurological disorder which impairs social, communicative, and processing abilities

(World Health Organisation [WHO], 2016). Individuals present with a heterogeneous,

often comorbid, expression of diagnostic symptoms and, similarly, the experiences of

those caring for a child with ASD are also varied and multifaceted (WHO, 2017; Lutz,

Patterson & Klein, 2012). Autism affects not just the child, but rather, the whole

family system in which that child lives, plays and learns (Bayat, 2007; Lutz, et al.,

2012). There is no cure for ASD and the best treatment is family-based therapy

interventions (Canitano & Bozzi, 2015; Dawson, et al., 2010; Hoefman, et a., 2014;

Ospina, et al., 2008; Stadnick, Stahmer & Brookman-Frazee, 2015; White, Oswald,

Ollendick & Scahill, 2009). The effectiveness of these interventions is dependent upon

caregiver wellbeing (Bourke-Taylor, Howie, Law, 2010; Hoefman, et al., 2014) and

active involvement (Bourke-Taylor et al., 2010; Standick, et al., 2015).

Mothers in particular are impacted by the demands of caregiving as they are

generally the primary carers of young children and as a result of their efforts often

sacrifice paid work and leisure participation (Bourke-Taylor, et al., 2010; Hodgetts,

McConnell, Zwaigenbaum & Nicolas, 2014; Lutz, et al., 2012; Montes & Halterman,

2007); Ritz, Pizur-Barnekow & Darrah, 2011; Savage & Bailey, 2004). The constant

and sustained stressors faced by mothers caring for children on the spectrum,

combined with the rapid increase in prevalence rates of the disorder, promote the

necessity for more effective tailored supports (Australian Bureau of Statistics [ABS],

2012; Hodgetts, Zwaigenbaum & Nicholas, 2015; Hoefman, et al., 2014; WHO, 2016).

Furthermore, the mother generally assumes a central role in the family and acts as a

portal into the dynamics, and health, of the diagnosed child and the family unit as a

whole (Bourke-Taylor, 2010; Hodgetts, et al., 2014; Hoefman, et al., 2014; Lutz, et

al., 2012; Phelps, Hodgson, McCammon & Lamson; 2009). Currently, there is a lag

in the development of reflective supports which extend beyond just the child to

consider the familial context (Hodgetts et al., 2014; Marshall & Long, 2010). There is

also a de-emphasis on strength-based perspectives and supports for those caring for a

child with autism (Green, 2007; Phelps, McCammon, Wuensch, Golden, 2009b). The

strengths-based literature that does exist promotes the sustained benefits of supporting


mothers and families from this perspective (Green, 2007; Higgins, Bailey, Pierce,

2005; Hodgetts, et al., 2014).

The burdens and vulnerabilities associated with caring for a child with ASD

dominate the current literature base (Bourke-Taylor, et al., 2010; Green, 2007;

Hoefman, et al., 2014; Savage & Bailey, 2004; Myers, 2009). Yet, there is also

research to indicate that some mothers associate the caregiving experience with

feelings of enrichment, empowerment and wellness (Bayat, 2007; Green 2007;

Hoefman, et al., 2014; Myers, Mackintosh, Goin-Kochel 2009; Pakenham, Sofronoff,

Samios, 2004). These feelings may often interchange and cycle over the course of the

child’s development and the caregiving journey (Bayat, 2007; Bayat & Schuntermann,

2013; Myers, et al., 2009). It is necessary to highlight the many experiences of

caregiving as this promotes further understanding of ASD, and its compounding

impact, and thus assists in the development of more supportive interventions

(Hoefman, et al., 2014; Stadnick, et al., 2015).

The majority of the research conducted with the autism population has been

quantitative in nature with the focus largely on trying to pinpoint those factors which

support and those factors which tax mothers’ level of wellbeing/coping (Hoefman, et

al., 2014; Myers, et al., 2009; Stadnick, et al., 2015). However, the complexities,

emotions, and longitude associated with mothering a child on the spectrum make it

difficult to quantify the caregiving experience into a statistic. Qualitative research

methods, however, are able to capture the human dimensions steeped within the

caregiving journey and how these may change over time (Clandinin, 2007; Krausz &

Meszaros, 2005; Lutz, et al., 2005). This participatory study offers valuable insights

into the caregiving experience by using Visual Narrative Inquiry to transform our

understanding of ASD and caregiving. Such research techniques have not been used

specifically with this population. The findings contribute valuable new perspectives

on ASD and the lived experiences of maternal caregivers.

1.1.2 Researcher standpoint

I am a mother of a 13 year old boy diagnosed with ASD. The drive to depict the

diverse lives of those caring for children with ASD was borne out of my own

experiences. In particular, the limited perceptions of ASD and incongruent supports;

my own creative and reflective journey; and interest in the stories of other

mothers/carers have been the catalysts for this study.


I have always been curious as to why a disorder defined by a sliding scale of

characteristics is so often seen through such a monochrome filter. Perceptions of ASD

and my child (as well as me as the primary caregiver) have often been deficit based

and stereotyped. My son does not line up objects, flap his hands or meltdown if a

schedule is not adhered to. In contrast, my son is socially driven (yet struggles to

maintain friendships), willing to try new experiences (particularly if it involves food)

and has an infectious laugh that resounds at his own repertoire of jokes. My

experiences have reinforced that there is often a quickness to label my son and to hold

a somewhat blinkered view of his academic and social capacities. A sense of unease

has often brewed over many of the strategies proposed by the education system and

some allied health professionals. The strategies tended to be 'cookie cutter', linear,

isolated, and time consuming, while, in contrast, life with ASD is more dynamic,

multi-faceted, full, and fluid. I felt this gap resulted in ineffective supports for my son

and at times overshadowed my perceived self-efficacy. I have felt the need for an

increased awareness of ASD to improve the alignment between theory and practice

and enable more congruent and beneficial supports.

Certainly, my experiences of life with ASD is that it is tenuous, exhausting, and

even grief-filled. It is easy to feel swamped by the ongoing burden of everyday caring

activities; sometimes I have felt a deep pang of heartache when I see ‘typically

developing’ boys engaging in ‘typically developing' activities like playing soccer with

their mates; sometimes I feel deeply the complication that ASD brings onto all

members of my family. Yet, if I fail to see the resolve on offer, I risk overwhelm,

inertia, ill health - and so I try to stay orientated towards the unique gifts of life with

ASD. I have found it ‘normalizing' to hear stories from other women. I have found it

particularly helpful to maintain a reflective practice of journaling or photographic

journaling as this tends to usher in (even fleeting) moments of mental stillness.

Photography intersects with my journey through motherhood and often as the

day blurs by a moment will capture me; inviting in a sense of calm, of awe, a deeper

breath - a pause. When this occurs, I notice a positive psychophysical response. It is

these moments that I capture, often just on my iPhone, often with my children bustling

beside me. I have intermittently kept a journal and I began to marry these two media

together. Curious about how these simple processes of noticing and reflecting could

affect a change in my state of being, I began to dip into various literature sources. Over

time I wove together my interests in neuro-plasticity, The Arts, theology, and wellness.


Shortly after my son's diagnosis I serendipitously came across the art of Digital

Storytelling - a participatory movement where people construct their own story using

a series of still photographs they have taken coupled with an audio track. I learnt of

the personal and communal benefits inherent in this process and felt drawn to the

feminist framework from which the work stemmed. I was attracted to these ideals of

disrupting the power base and ensuring previously unheard voices and stories are heard

(Wang, 2003). I resonated with the idea that everyone had a story to tell and it was

through this work that I first considered photography as a vehicle for telling the story

of ASD. Speaking with other mothers of children on the spectrum has highlighted how

each woman’s story is different and, in no way, are mothers' journeys identical or linear

or saved with a quick fix. I mused how telling individual stories could perhaps raise

awareness, educate, affect policy and services – or perhaps influence others in a caring

role.

As I began to look into the ASD literature, part of me felt validated by what I

read - caregiving was a ‘tough gig’. As I began to dig deeper I came across qualitative

research papers (for example, by Biksika, et al., 2013; Lutz et al., 2012; Markoulakis,

Fletcher & Bryen, 2012; Marshall & Long, 2010; Myers, et al., 2009; Phelps, et al.,

2009) which gathered data using narrative inquiry methods. I felt drawn to this

literature; it spoke of the differences in mothers’ experiences and captured a sense of

journey over time. This resonated with my own lived knowing. Mostly, I appreciated

the studies featuring mothers speaking of autism and/or caregiving in a positive light.

I appreciated and found confidence in those who considered autism a gift; in those who

had found strength in their situation; and in those who articulated that this journey

unfolds over time. This literature, though, existed under the surface of a mountain of

qualitative data. I felt it important to draw all stories to the surface. So, the crafting

of this study began - sparked by my own curiosity, coupled with investigations into

literature in this field and identified gaps in the literature. There is a need for greater

understanding of ASD and the caregiving experience of mothers.

In her dissertation, Greene (2006), speaks of her dual role as both a mother of a

child on the spectrum as well as a researcher. She speaks of being both a ‘participant’

and a ‘social observer’. I certainly feel that this resonates with my standpoint in this

study. Throughout the project I have been aware that my personal experience made

me a participant in this process, yet as a researcher I also needed to maintain a level of

neutrality as I observe the process unfold for the study participants. While I feel my


own understanding and experiences of autism invited research participants to engage

with a greater sense of openness and trust, overridingly, I was committed to

maintaining research rigour.

1.2 CONTEXT

To appreciate the potential contribution of this study, it is necessary to

understand the socio-political context underpinning ASD and caregiving. This section

begins by looking at the broader disability support context before focusing on ASD

and caregiving more specifically. Australia is currently in the process of progressively

transitioning disability support funding onto the National Disability Insurance Scheme

(NDIS). This national policy shift has resulted in significant, and at times contentious,

adjustments for persons with a disability and their caregivers (Carers NSW, 2018). It

is therefore necessary to begin by briefly outlining this scheme and what it may

represent for persons with a disability and their caregivers alike (Section 1.2.1). The

context of the study is then further revealed through a more targeted discussion of

ASD. The increasing ASD prevalence rates (Section 1.2.2) strain service systems and

financial costs compound the need for more reflective policy and service directions

(Section 1.2.3). The call for more congruent solutions is further promoted by

significant impact of this disorder on the caregiving experience (1.2.4) and a case is

made for strength-based solutions for families (1.2.5).

1.2.1 Service, policy directions: National Disability Insurance Scheme (NDIS)

Australia is currently in the midst of major disability reform with the

introduction of the NDIS. This scheme represents a significant shift in funding and

care support for persons with a disability and thus has ramifications for those family

members and friends involved in (unpaid) caregiving (Carers Australia 2015; Carers

NSW, 2018; Foster, et al., 2016). The National Disability Insurance Agency (NDIA)

is an independent statutory agency whose role it is to implement the NDIS

(Productivity Commission, 2017). The NDIS aims to provide lifelong, individualised

supports, essential to enable a person with a disability (referred to in the scheme as the

‘participant’) to live life to their full capacity. This reform shifts the locus of control

from service providers to funding individuals. It is thought that this allocation shift

will stimulate the care market through consumer choice (Foster, et al., 2016). Since

2013 Australian States have progressively transitioned into the NDIS and its

introduction has received varying response (Carers NSW, 2018).


Whilst the NDIS has achieved independence and improved living for some and

it has also resulted in much criticism, particularly in regard to economic viability,

service availability, and respite (Carers Australia 2015; Carers NSW, 2018). A paper

by Hughes (2017) refers to the burgeoning, and ultimately unsustainable, cost of the

NDIS, including the $37 billion set-up cost. Discrepancies in infrastructure and the

capacities of regional areas to provide supports was highlighted in a paper by Foster,

et al., (2016). Further, and of importance to this study, carers are reporting decreased

wellbeing (Carers NSW, 2018). With the focus of the NDIS now on the participant,

carers’ needs are no longer of prime concern and funding allocations have moved away

from respite provision. Advocacy groups report this to be impacting on carer health

and sustainable caregiving (Carers Australia, 2015). For Hughes (2017), the NDIS

management assumption that paid, formal supports systems are primary in importance,

and that familial care is secondary is considered fundamentally flawed: “Support

systems need to be built around familial and natural support systems” (p. 49). Further,

consideration of this familial context is asserted as key to ensuring the NDIS is

economically sustainable and effective in the provision of the care it has been set up

to ensure (Hughes, 2017). This section frames the broad disability and caregiver

policy context of this study; discussion will now narrow to autism specific policy and

service directions which are, in part, being shaped by the increasing ASD rate.

1.2.2 Increasing rates of ASD

In understanding the context of this study and appreciating its potential

contribution, it is necessary to discuss the increasing ASD prevalence rate. While there

are no definite figures or reasons agreed upon for the increase in the rate of ASD, the

statistics confer the rate of ASD is rising (ABA, 2015; Centre of Disease & Control,

2016; WHO, 2017). The latest available Australian figures estimate 164,000 (1 in 150)

Australians are now diagnosed with ASD; this figure represents an increase of 42.1%

since 2012 and a considerable increase since 2009 when the figure was estimated to

be 64,000 Australians (ABS, 2015). United States figures estimate 1 in 68, a rate

which has doubled over the past decade (CDC, 2016). The prevalence rate continues

to increase globally, yet the reason for this increase remains unknown (CDC, 2016;

WHO, 2017). There is some argument that the increase can be attributed to factors

such as expanded diagnostic criteria; new diagnostic instruments; inaccurate diagnosis

techniques; increased awareness of ASD yet such factors can also further complicate

the picture (Matson & Kozlowski, 2011). Regardless, clinicians, educators, and


communities are now faced with increasing numbers of children with ASD, and their

families, all of whom require assessment, effective treatment, and understanding

(White et al., 2009). Service systems are being strained to meet the demand (Hodgetts,

et al., 2015). As the diagnostic trajectory continues upward the need to attend to the

personal and societal impacts of this disorder also grows thus substantiating projects

such as this which focus on enhancing awareness and supports.

1.2.3 Service and policy directions: autism specific

Autism is not a personalized, localized issue but rather has broad implications

for the education, social services, and financial sectors (Canitano & Bozzi, 2015;

Hodgetts, et al., 2014; Ritz, et al., 2011; Savage & Bailey, 2004). Compounded by the

prevalence rate of ASD, the need for more reflective policy and services has been

identified by peak organizations such as the WHO (2013) and the Australian

Government (2016). For example, in 2013, the WHO convened 'Autism spectrum

disorder and other developmental disorders: From awareness raising to capacity

building’ – a convention held in Geneva, Switzerland. Two of the key objectives of

this convention were: (1) to promote sharing of best practice and solutions, and (2) to

identify priorities for research and action. A leading recommendation from these

discussions was the need to develop holistic solutions that harness the lived experience

of those affected by ASD. Additionally, public education focusing on the nature of

ASD, the needs and the difficulties, was also cited as an important element within the

multifaceted approach required.

Comparatively, Australian policy and service directions maintain a similar tone.

In 2013, an Australian Parliamentary paper by Roth (2013) outlined the impact of ASD

within our community. In addition to noting the ongoing demands within the health

and education sector, the paper also highlighted other impacts of ASD on the

community. The briefing paper estimated the annual economic cost of ASD in

Australia to be between $8.1 billion and $11.2 billion. A multifaceted approach was

considered essential as a new way of understanding and supporting those affected by

the disorder is necessary. As a result, Roth's 2013 Parliamentary briefing paper

recommended that caregivers participate in research to develop more tailored policy

and actions. Roth’s report called for more localised and personalised information to

help close the gaps in current support structures for families affected by ASD (Roth,

2013).


Australian figures are consistent with a 2014 investigative report estimating the

costs of autism in the United States and United Kingdom (Buescher, Cidav, Knapp &

Mandell, 2014). This report examined direct, indirect, and lifetime societal economic

costs associated with ASD. The estimated average cost of supporting an individual

with an ASD during his/her lifespan is $2.4 million - $1.4 million in the United States

and £1.5 million - £0.92 million (US $2.2 million - US $1.4 million) in the United

Kingdom. One of the largest cost components was reported to be parental productivity

loss. The authors emphasized that “the enormous effect [of autism] on families” (p.

721) warranted policy attention. Indeed, the call for new directions in research, policy,

and support services is echoed throughout the literature on autism (APA, 2013; Bayat,

2007; Canitano & Bozzi, 2015; Ecker, et al., 2013; Hoefman, et al., 2015; Marshall &

Long, 2010; al., 2001; White, et al., 2009). Such literature asserts the benefit of

capturing the spectrum of caregivers’ experiences to enable more aligned, effective

support policies and solutions. This need for more integrated and participatory

solutions is also reflected in ASD caregiving literature (for example, Bayat, 2007;

Packenham, et al., 2004; Rizk, et al., 2011; Roth, 2013; Savage & Bailey, 2004; Weiss,

et al., 2001).

1.2.4 Caregivers: Service and policy directions and the caring experience

Autism is a pervasive, lifelong disorder which may present substantial

challenges for the child and their family (ABS, 2015). It is important for service

providers and policy makers to understand the heterogeneous nature of autism and the

impact this disorder can have on families (Marshall & Long, 2010). It is just as

important to understand the symbiotic relationship between the mother and the child’s

health, as affirmed within the literature (Bayat, 2007; Bourke-Taylor, et al., 2010;

Hoefman, et al., 2014; Stadnick, et al., 2015). Large population studies show mothers

are primary carers in over 90% of cases (Montes & Halterman, 2007) and are

considered the person most knowledgeable of the needs of the child (Bourke- Taylor,

2010). Given that it is generally the mother who assumes the primary carer role,

consideration needs to be given to the impact of caregiving on the mother (Bourke-

Taylor, 2010; Hoefman, et al., 2014; Marshall & Long, 2010; Rizk, et al., 2011;

Stadnick, et al., 2015). Underpinning the experiences of mothers of children with ASD

is a broad, changing, carer policy movement.

A 2015 report by Carers Australia insights the caregiver experience and policy

direction in Australia. In 2015 2.86 million Australians, one in eight, identified as a


carer (that is unpaid, informal care versus paid support worker). This number

represented a 6.3% increase since 2012 due to population changes. Due to the demands

of caregiving carers experience reduced health and wellbeing, and experience lower

than average rates of employment and thus income inequality. The Report estimated

the replacement costs of carers to be $60.3billion. The issues of the costs of caring

versus the economic value of caring is gaining traction in Australian and

internationally. Carers Organisations form a global network and work collaboratively

to progress policy issues pertaining to carers (Carers Australia, 2017; Carers NSW,

2018; Yeandle, 2017). The literature base pertaining to carers is increasing and the

United Kingdom has recently developed a specific carer database (Larkin, 2018). In

response to the significant issues faced by carers, there are demands for more research

and new perspectives (Larkin, 2018; Yeandle, 2017).

Mothers of children with ASD experience increased mental health issues

compared to mothers of children with other disabilities (Bitsika, et al., 2013; Hoefman,

et al., 2015). This necessitates deeper understanding of the mother in the caregiving

role and the subsequent development of reflective supports. Research by Rizk, et al.

(2011) recommends mothers of children with autism receive specific, ongoing post-

diagnostic support. They also call on service professionals to consider carefully the

complexity of factors alive within each family and make recommendations

accordingly (Rizk, et al., 2011). Echoing the importance of holistic and individualized

supports is Marshall and Long (2013). Both Marshall and Long and Ritz, et al., are

among those who cite the multiplicity and longevity of stressors faced by caregivers

are a basis for propelling the need for new research and support approaches.

1.2.5 Strength based supports

Whilst the caregiving population are at risk of psychological distress, there are

mothers who also find caregiving to be a positive experience and associate caregiving

with feelings of wellness. Uncovering all of the lived experiences of mothers of

children with autism is important as it draws all stories into consideration. It is

important not to entrench an assumption that the family’s experience is negative.

Rather, best practice involves encouraging and empowering caregivers with strength-

based strategies which enhance feelings of self-efficacy and acceptance, leading to

better health outcomes (Bayat, 2007; Lutz, et al., 2012; Marshall & Long, 2013;

Pakenham, et al., 2004; Savage & Bailey, 2004; Weiss, et al., 2013). The tendency of

many service providers who interface with families caring for a child with ASD to


gravitate towards negative aspects of the caregiving experience starves families of

opportunities to acknowledge their own resilience and embrace a positive outlook

(Bayat, 2007; Green, 2007). Instead, a strengths-based perspective shapes intervention

which promote health and growth for the family (Bayat, 2007). Congruent to Bayat’s

research, this thesis asserts the importance of family-centred policy to reflect a

strengths-based approach.

1.3 PURPOSE

1.3.1 Research purpose

The overall aim of this research was to make visible the lived experiences of

mothers of children with ASD through photographic journaling. By bringing to the

surface the nuanced and varied lives of participants the study aimed to offer a more

intimate understanding of the burdens, gifts, and confluences of mothering a child with

ASD. These understandings contribute to developing more congruent policy and

service provisions for families experiencing ASD. Further, this study examined how

participants used the photographic journaling process as a reflective tool and whether

or not it offered support for their personal caregiving journey.

Therefore, the intention of this study was twofold:

1. To better understand the complexities of raising a child on the autism

spectrum by listening to lived maternal experiences (social level).

2. To investigate the use of photographic journaling as a reflective practice for

mothers of children on the autism spectrum (individual level).

1.3.2 Research questions

The research study answered the following key question:

What are the lived experiences of mothers of children with ASD?

Secondary question:

How do mothers of children on the autism spectrum use photographic journaling

as a reflective tool?

1.4 RESEARCH DESIGN

This study examined the lived experiences of maternal caregivers using Visual

Narrative Inquiry methods. In this study, photographic journaling acted as both a

reflective tool to be studied, as well as a data collection method (Bach, 2007). The


Visual Narrative Inquiry design is outlined in detail in Chapter 3. Briefly, this

qualitative method best captures the complexity of the caregiving experience, as well

as the heterogeneous nature of autism (Clandinin, 2013; Marshall & Long, 2009;

Myers et al., 2009). It is through exposing this variation that the study contributes

understanding to the field of autism and caregiving.

Narrative techniques focus on the participant’s individual stories (Bayat, 2007;

Clandinin, 2013; Marshall & Long, 2009; Myers et al., 2009). Whilst it is important

to understand the difficulties faced by mothers it is also important to uncover the

positive stories as examples of wellness and beacons of hope. Diverse stories are

necessary in a greater societal understanding of ASD (Myers, et al., 2009; Pakenham,

et al., 2004; Savage & Bailey, 2004). Beyond just words, the use of photographic

journaling will be used to convey story thus adding a new, unexplored, layer of insight.

Photography as a first-person method of inquiry involves the participant

capturing images from their perspective and in such a way the participant becomes a

co-researcher and the researcher a co-participant in a previously unseen world (Bach,

2007). Database searches indicate photographic research techniques have not been

used specifically with mothers of children with ASD and there is limited research

examining reflective practice for mothers of children on the spectrum. However,

literature within the broader fields of health and sociology suggests that this study

design contributes new understanding in the field of disability and caregiving and

specifically the area of ASD (Langmann, & Pick, 2018).

1.5 SIGNIFICANCE AND DEFINITIONS

1.5.1 Significance

This study contributes insights into the lived experiences of mothers of children

with ASD. Photographic journaling techniques revealed the unique, storied lives of

mothers and the implications of caring for a child on the spectrum. This study

considered each individual story as valuable and in demonstrating the breadth of these

experiences helped shape awareness of the confluences associated with autism and

caregiving. Essentially, this study drew voices from the periphery into the central

realm of policy discussion and service provision (Prof. Torrance, personal

communication, 23 November, 2015).

While research has focused on understanding mothers of children with ASD

using quantitative methods, there are a limited number of qualitative studies. Further,


there is a dearth of studies exploring the lived experiences of this. This study was the

first to explore the potential contribution of reflective practice for this group.

The research corpus is dominated by burdens and vulnerabilities associated with

caregiving (Bourke-Taylor, et al., 2010; Green, 2007; Hoefman, et al., 2014; Savage

& Bailey, 2004; Myers, 2009; Phelps, et al., 2009). Significantly, this research

uncovered maternal stories which associate with associate feelings of wellness.

Photographic journaling enabled positive insights and self-reflection which influenced

wellness in mothers of children with ASD and assisted in transforming understanding

of autism and caregiving on a broader, societal level.

1.5.2 Definitions

For clarity, key terms used in this document are defined in Table 1.

Table 1.1

Key Terms and Definitions

Term Definition Autism Spectrum Disorder (ASD) The following is offered by the World Health

Organisation (2017): Autism spectrum disorders are a group of complex neuro- development disorders. This umbrella term covers conditions such as autism, childhood disintegrative disorder and Asperger syndrome. These disorders are characterised by difficulties in social interaction and communication and a restricted and repetitive repertoire of interests and activities. The following standardised criteria, as specified by The American Psychiatric Association's Diagnostic and Statistical Manual, Fifth Edition (DSM-5) (APA, 2013), guides diagnosis, provides further insight into ASD:

• Persistent deficits in social communication and social interaction across multiple contexts

• Restricted, repetitive patterns of behaviour, interests, or activities, including hyper- or hyporeactivity to sensory input

• Symptoms must be present in the early developmental period (but may not become fully manifest until social demands exceed limited capacities, or may be masked by learned strategies in later life)

• Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning

• These disturbances are not better explained by intellectual disability or global developmental delay


Term Definition Caregiver “Carers are people who provide care to others in need of

assistance or support. An informal carer provides this service free of charge and does so outside of the formal care sector. An informal carer will typically be a family member or friend of the person receiving the care, and usually lives in the same household as the recipient of care. As such, many people receive informal care from more than one person. The person who provides the majority of informal care is known as the primary carer” (Carers Australia, 2015).

Meaning making

Hein (1999; 2015) says the following about meaning making: “All of us constantly organise and select the information our senses take in from the natural world and from the symbolic and cultural worlds of words and signs. This is how we make sense of these worlds. This activity is independent of any particular educational theory. It is a consequence of us being human, of our neurological system and the way it develops and interacts with the environment.”

Making meaning Making meaning refers to the ability to assign meaning to difficult life challenges and view a potentially negative, stressful situation as an opportunity or gift (Lutz, et al., 2012).

National Disability Insurance Agency (NDIA)

The National Disability Insurance Agency (NDIA) is an independent statutory agency. Our role is to implement the National Disability Insurance Scheme (NDIS). (Productivity Commission, 2017).

National Disability Insurance Scheme (NDIS)

Disability reform in Australia centres on a National Disability Insurance Scheme (NDIS), which aims to provide lifelong, individualised supports essential to enable a person with a disability to live life to their full capacity (Foster et al., 2016; Productivity Commission, 2017).

Photographic journaling Combines personal reflective practice of journaling with photography by using photographs to tell a story and capture the events and moments in life. The written narrative is subordinate to the pictorial image. The practice has its roots in the practice of photographic journalism (Webster, 2017).

Photovoice

The founders of Photovoice, Wang and Burris (1997) define Photovoice as: A visual research methodology that puts cameras in the hands of the participants, often members of marginalized groups, to document, reflect upon, and communicate issues of concern with the goal of creating social change. As a practice based in the production of knowledge, Photovoice has three main goals: (1) to enable people to record and reflect their community's strengths and concerns, (2) to promote critical dialogue and knowledge about important issues through large and small group discussion of photographs, and (3) to reach policymakers.


Term Definition Reflective practice Reflective practice is an active process aimed at

understanding, improving, and transforming ways of thinking and working (York-Barr, Summers, 2001).

Resilience Resilience is defined as the process of successful adaptation and perseverance when faced with significant life challenges or adversity (Whitehead, Dorstyn &Ward, 2015).

Self-efficacy Bandura (1977, 1986, 1989) defines self-efficacy as the belief in one’s abilities to influence events that affect their lives and determines how one feels, thinks, motivates themselves and behaves in specific situations. Self-efficacy is crucial to psychological wellbeing and acts to reduce distress, including parental distress (Coleman & Karraker, 1998; Hastings & Brown, 2002; Kuhn & Carter, 2006).In relation to ASD, self-efficacy is thought to mediate the effects of child behaviour on maternal mental health (Hastings & Brown, 2002).

Visual Narrative Inquiry The founder of Visual Narrative Inquiry, Bach (2007), defines visual narrative as: “An intentional, reflective, active human process in which researchers and participants explore and make meaning of experience both visually and narratively. Visual Narrative Inquiry builds from a view of narrative inquiry as a study of experience as story and as a way of thinking about experience. Visual Narrative Inquiry adds the layer of meaning so that photographs and visuals become ways of living and telling one’s stories of experience.”

Wellness The following definition is offered by the World Health Organisation (2017): Wellness is the optimal state of health of individuals and groups. There are two focal concerns: the realisation of the fullest potential of an individual physically, psychologically, socially, spiritually, and economically, and the fulfilment of one’s roles and expectations in the family, community, place of worship, workplace, other settings.


1.6 THESIS OUTLINE

This thesis is comprised of five chapters. This chapter has introduced the study

through a personal experience and frames the work within a national and global

context. It has provided a statement of the research purpose, key questions for

investigation, an overview of the research design, and has defined key terms. Chapter

2 examines the literature within this field. To understand the maternal lived experience,

the focus of this study, it was necessary to explore literature pertaining to ASD; ASD

and maternal vulnerabilities; maternal wellness; and meaning making. The literature

review offers insights into the heterogeneous nature of autism and traces the varying

and nuanced ways that caring for a child with ASD impacts families, and particularly

mothers. The current literature corpus promotes the need for a greater understanding

of ASD and the maternal caregiving. Innovative Visual Narrative research methods

afford the capacity to depict lived experiences and represent a unique approach within

the field of autism and caregiving.

Chapter 3 outlines the research design. The chapter begins with reviewing the

methodological approach to demonstrate the alignment of narrative and Visual

Narrative Inquiry with the purpose of this study. The second half of the chapter

addresses the practical elements of the study – exploring intentional research design

elements which were pivotal to satisfying the intent of the research and enhancing the

overall quality of the project. The section restates the research questions before

outlining timelines and procedures; important ethical considerations; participant

profile and recruitment; data collection; data analysis and trustworthiness. The

thematic findings of the study are presented in Chapter 4. Child health/behaviour is

considered an influencer theme and discussion reveals how the maternal experience is

shaped within the sphere of family; external systems; and wellness. Findings also show

how mothers used the photographic process. Chapter 5 recaps key findings from the

study and draws implications for policy and practice and makes recommendations for

future research.

Chapter 2: Literature Review 17

Chapter 2: Literature Review

This study is about making visible the lived experiences of mothers of children

on the autism spectrum through photographic journaling. To appreciate the lived

experiences and potential contribution of this study it is important to assess the nature

of ASD and its influence on maternal functioning. The nature of ASD contributes

significantly to feelings of caregiver vulnerability and wellness (Bitsika et al., 2013;

Hodgetts, et al., 2014; Phelps, et al., 2009; Ritz, et al., 2011) thus it is important to

begin with an overview of the disorder (Section 2.1). The literature confers that

mothers of children on the spectrum are at risk of experiencing a health decline.

Section 2.2 explores familial vulnerabilities, before narrowing the focus onto the

maternal experiences of caregiving. Within the caregiving literature positive

experiences also exist and these are just as important to explore (Section 2.3). Tracing

both the factors associated with caregiver vulnerabilities, and the literature pertaining

to wellness, is important in understanding this population and marking out the

landscape of this research. The complexities associated with caring for a child with

ASD are prominent across the literature and these complexities drive current caregiver

research directions and recommendations (Section 2.4). New perspectives are needed,

and The Arts presents as a process which may capture the full breadth of maternal

experiences (Section 2.5). This Visual Narrative study used photographic journaling

to make these experiences more tactile and transform understanding of mothers of

children on the spectrum. In justification of this statement, a vast array of major

education and health database searches were conducted with various search terms

used. The terms ‘Visual Narrative Inquiry/autism/mothers” were used to search

EBSCO host databases including, ERIC, Education Source, PubMed, PsychINFO,

PsychEXTRA, PsychARTICLES, and Social Work Abstracts with searches also

conducted via QUT Library ProQuest and Google Scholar sites. Whilst studies using

narrative methods with this group were uncovered, no visual narrative studies were

located. Searches were again conducted using other visual methodology key terms

‘Photovoice’ and ‘Photo elicitation.’ No visual methods studies were found for this

maternal group. Studies were found using these other visual methods to investigate the

experiences of both siblings and persons with disabilities. No searches located studies

combining any autism group with Visual Narrative Inquiry methods specifically. Such

searches were conducted regularly across the four-year lifespan of this Masters Project

18 Chapter 2: Literature Review

and, to ensure the statement remained valid, a search was again completed in the

finalisation of this thesis.

2.1 AUTISM SPECTRUM DISORDER

This section lays a foundation for understanding ASD. It is important to

understand the complex nature of ASD as this intensifies caregivers’ experiences and

justifies the need for greater understanding of mothers of children on the spectrum.

ASD is a general term for a group of complex neurological development disorders

including conditions such as autism, childhood degenerative disorder, and Asperger

syndrome (WHO, 2017). With the publication of the Diagnostic and Statistical

Manual of Mental Health Disorders, 5th Edition (DSM-5) by the American Psychiatric

Association (APA) in 2013, previous autism diagnostic categories were merged under

one umbrella diagnostic label of ASD. The disorder impairs, to varying degrees,

cognitive, social, and communicative abilities as well as sensory processing and motor

control (APA, 2013). Repetitive behaviours and restricted interests are also hallmarks

of the disorder (WHO, 2017).

Comorbid difficulties, such as Attention Deficit Hyperactivity Disorder

(ADHD), anxiety, and depression are commonly associated with ASD (Reynolds,

Patriquin, Alfanod, Loveland, Pearson, 2017). Research now estimates up to 75% of

individuals on the spectrum exhibit ADHD symptoms and as such the dual-diagnoses

of ASD and ADHD is now recognized in the DSM-5 criteria (APA, 2013; Reynolds,

et al., 2017). Between 11% and 84% of children with ASD experience anxiety, while

the prevalence of depressive disorders is approximately 56% (Joshi et al., 2010;

Reynolds, et al., 2017; White, et al., 2009). Much literature acknowledges the

interdependence of these internalizing problems and the ways in which these may

inhibit mental and emotional regulation and lead to disruptive behaviours (APA, 2013;

Reynolds, et al., 2017; White, et al., 2009). Further, research links low sleep quality,

which many children on the spectrum experience, with greater ASD symptom severity

(Cortesi, Giannotti, Ivanenko, Johnson, 2010; Mayes & Calhoun, 2009; Reynolds, et

al., 2017). Other research traces how these psychological difficulties change as

children move through adolescence (White, et al., 2009). The complex symptomology

of autism complicates caregiving efforts. Thus, the drive to understand the disorder,

and how to support those responsible for caring, continues to gain traction.


Further compounding the complexity surrounding autism is the unknown

pathology and etiology of the disorder (Ecker, Spooren, Murphy, 2013). As the name

spectrum suggests, each individual presents with a unique and heterogeneous

expression of diagnostic symptoms and this variation is reflected in the DSM-5 (APA,

2013, para. 4): “There is a great range of abilities and characteristics of children with

autism spectrum disorders — no two children appear or behave the same way”. In

addition, symptoms can change in presentation over time as the child develops (APA,

2013; White, et al. 2009). While the definitive cause of autism remains unknown,

research suggests that it may be due to a combination of genetic dispositions and

environmental influences which act to influence brain development (APA, 2013;

Canitano & Bozzi, 2015; Ecker, et al., 2013; Matson & Kolwolski, 2011). Despite

advances into autism pathogenies and etiology, understanding remains elusive and

effective treatments are still lacking (Canitano & Bozzi, 2015).

ASD is a Pervasive Developmental Disorder for which there is no cure and no

intervention has been shown to reduce the prevalence of ASD (United States Disease

Centre of Control [CDC], 2016). However, early invention is thought to maximize the

ability of the child to function and more widely participate in their community (ABS,

2015; Canitano & Bozzi, 2015; Dawson, et al., 2010; Ospina, et al., 2008; White, et

al., 2009). Treatment plans ought to address individual needs, adjust to the

development of the child, and involve the child’s family working intensely with health

professionals (APA, 2013; Canitano & Bozzi, 2015; CDC, 2016; Dawson, et al., 2010;

Ospina, et al., 2008; White, et al., 2009). The effectiveness of these interventions is

dependent on continuity between healthcare providers and families (Hodgetts, et al.,

2014). The effectiveness of interventions is also dependent upon caregiver health

(Bourke-Taylor, et al., 2010; Stadnick, et al., 2014). The heavy responsibility placed

on parents contributes to the need for this study involving mothers of children on the

spectrum. Pivotal to the development of more effective strategies is an understanding

of how autism impacts families, particularly mothers. As the diagnostic trajectory

continues upward the need to attend to the personal and societal impacts of ASD also

grows thus substantiating projects such as this which focus on enhancing awareness.

and supports.


2.2 ASD: FAMILIAL AND MATERNAL VULNERABILITIES

The nature of ASD is complex and variant, as is caring for a child on the

spectrum. Given this prolonged and multidimensional aspects, there is a need to better

understand the lived experiences of parental caregivers (Hoefman, 2015). The intent

of this project was to deepen current understanding of the maternal caregiver

experience. To enable this, it is necessary to review existing literature on how ASD

impacts families, and in particular mothers caring for children with ASD. Dominating

the literature base are the familial and maternal vulnerabilities associated with caring

for a child with ASD. Families, including mothers, with a child on the spectrum are

vulnerable to physical, mental, and emotional health problems (Bourke-Taylor, et al.,

2010; Hodgetts, et al., 2014; Hofeman, et al., 2015; Ritz, et al., 2011; Savage & Bailey,

2004). Research (for example, Lutz, et al., 2012) has sought to identify the ‘stressors’

that contribute to families and mothers feeling vulnerable. The nature of autism is

thought to create a unique set of stressors which interact and compound to create the

dis-ease at both familial, as well as individual, caregiver levels. The discussion of the

literature will begin by examining familial vulnerabilities (2.2.1) before narrowing the

focus on the mother. Given the mother’s central role in the family and in caregiving

efforts, it is necessary to examine her against the family backdrop as this facilitates

insight into the layers of pressure she experiences (Lutz, et al., 2012) and thus allow a

more holistic understanding of the significance of this research.

2.2.1 Familial vulnerabilities

The personal, social, and economic burdens of raising a child on the spectrum

are well documented (Bourke- Taylor, et al., 2010; Savage & Bailey, 2004). Across

the breadth of quantitative and qualitative studies, key stressors emerge. These

stressors span from pre-diagnosis stage across the lifespan of the child and include:

• Difficulties in obtaining a diagnosis and emotions associated with the diagnosis

(Gray & Holden, 1992; Marshall & Long, 2010).

• Difficulties mobilizing ongoing support services, implementing home therapy

plans, and finding consistency with such support (Banach, Iudice, Conway,

Couse, 2010; Bourke-Taylor, et al., 2010; Gray & Holden, 1992; Marshall &

Long, 2010; Sanders & Morgan, 1997; Twoy, Connolly, Novak, 2006).


• Social and emotional supports which are considered by caregivers to be

ineffective and/or lack understanding (Bourke-Taylor, et al., 2010; Bromley et al.

2004; Hoefman, et al., 2015; Phelps, et al., 2009).

• Finding and engaging with childcare/ education providers, and continually

advocating for their child within this system (Banach, et al., 2010; Gray & Holden,

1992; Marshall & Long, 2010; Sanders & Morgan, 1997; Twoy, et al., 2006).

• Financial stressors caused by and/or exacerbated by caregiving. This includes

feelings of inadequacy around time and money which lead to feelings of

demoralisation and depression (Bourke-Taylor, et al., 2010; Buescher, et al., 2014;

Gray, 2002; Hoefman, et al., 2015; Lutz, et al., 2012; Marshall & Long, 2010).

• Significant relationship pressures, including the additional strain placed on

marriages/partnerships as well as the bonds between siblings and other key family

members (Bayat & Schuntermann, 2013; Bourke- Taylor, et al., 2010; Hodgson,

et al., 2009; Lutz, et al., 2012; Marshall & Long, 2010; Phelps et al., 2009; Sanders

& Morgan, 1997; Senel & Akkok, 1996; Twoy, et al., 2006).

Mothers and fathers of children on the spectrum report clinically significant

anxiety and depression rates between three and five times higher than the normal adult

population. Further, when compared to parents of a child with a different disability,

parents of a child with ASD consistently demonstrate increased mental health issues

(Bitsika, et al., 2013; Dabrowska & Pisula, 2010; Hoefman, et al., 2015). The unique

nature of autism significantly contributes to the stressors felt by families. Research

points to the chronic, long-term and uneven developmental process of the child as well

as the autistic child’s language and cognitive challenges (Hoefman, et al., 2015;

Marshall & Long, 2010; Twoy, et al., 2006). The disruptive and intense behaviours

associated with autism are considered the most significant predictor of parental distress

(Bromley, Hare, Davidson, Emerson, 2004; Gray, 2002; Kuhn & Carter, 2006; Lutz et

al., 2012; Savage & Bailey, 2004). As such, the effect of child behaviour on familial

vulnerabilities is outlined below. It is important to understand how autism impacts

caregivers as this justifies the contribution of this study.

2.2.1.1. Familial vulnerabilities: child behaviour

The behaviour of a child with autism radiates through the experiences of the

family unit, as well as individual members. It can also negatively influence

interactions within larger communal spheres. The anti-social, disruptive, and


compulsive behaviours associated with autism, and the stress related to caring for a

child with these behaviours, often precludes normal family life (Bayat &

Schuntermann, 2013; Bitsika, et al., 2013; Gray & Holden, 1992; Hastings & Brown,

2002; Jones, et al., 2014; Phelps, et al., 2009). Such behaviours often require additional

parenting effort and skew attention and time away from other family members. This

can challenge existing roles in the family unit and cause a re-structure in order to cope

(Senel & Akkok, 1996; Seltzer & Orsmond, 2007). The impact of autism on family

functioning is also felt by the siblings of children with autism with studies attesting

strain on all familial relations, including the bond siblings share with their autistic

brother(s) or sister(s). Similar to the impact of autism at parental level, siblings report

their personal wellbeing, along with their ability to learn and socialise to be affected

by autism (Ferraioli & Harris, 2010; Seltzer, et al., 2007; Phelps, et al., 2009). The

stress felt by siblings often overflows onto mothers who assume centrality within the

family unit (Seltzer, et al., 2007).

The behaviours of a child with autism also permeate interactions within wider

social spheres. For example, the stigma surrounding ASD impacts how families of

individuals with ASD experience life (Gray, 2002). Similarly, atypical behaviours

often make social outings arduous and so families restrict contact due to perceived lack

of understanding within their friend or family spheres or wider community (Higgins,

et al., 2005). Parents in a study by Phelps, et al. (2009, p. 30) felt “challenged by

awkward social situations” and they attributed these feelings to “a lack of

understanding” about autism “or care about what the family was going through.”

Hoogsteen and Woodgate (2013) uncover further links between child behaviour and

feelings of stigmatization and isolation felt by parents of children on the spectrum.

Their study conducted interviews with 28 families of children on the spectrum living

in rural Canada. A major theme to emerge from the data was "making the invisible,

visible" (p.233). Parents spoke of how autism is an invisible disability. They also

spoke of how their "constant battles" (p.234) to ensure quality services and education

made the ASD visible. Parents shared how the invisibility of the disorder heighten

feelings of stigmatization and isolation when negative behaviours associated with the

autism are made public. They attributed such distress to lack of awareness and

education within the community. In response, the parents in Hoogsteen and

Woodgate’s study created awareness within the community and discussed the disorder

more openly. Parents felt that by doing this they created a "more welcoming

community” (p.235), one that was less judgmental and more knowledgeable of autism.


In turn, the participants noted decreased feelings of isolation and stigmatization. The

themes of isolation and visibility are pertinent to this thesis which has at its focus the

effectiveness of photographic journaling as a tool for raising awareness of autism and

the effect this disorder has on the lives of maternal caregivers.

2.2.1.2. Familial vulnerabilities: compounding stressors

The pervasive nature of ASD gives rise to a unique combination of stressors

which compound and interact to create familial vulnerabilities. The concept of a

stressor ‘pile up’ (as opposed to one individual stress agent) can be traced back to

formative work on coping, adaptation, and stress by researchers such as Cohen and

Lazarus (1979) and Bristol and Schopler (1984). Researchers have built upon this

notion when examining the vulnerabilities felt by families of a child on the spectrum

and such findings are important as they highlight the textured experiences of

caregiving and carve an argument for deeper appreciation of this population. For

example, Twoy, et al. (2006) delineate between stressors parents of children on the

spectrum may feel from internal sources (within the family) as well as from external

sources (for example, when advocating for education, health, and/or social services or

community perceptions). Similarly, Marshall and Long (2010) capture the

interdependence and intricacy of the stressors associated with caregiving. Their

research suggests that a child with autism presents a host of stressors to the family and

that these clusters of stressors interact and accumulate over time. Interestingly,

Marshall and Long reframe the definition of stressors to consider “nonevent stressors

(p.105) such as the on-going vocalisation of a child with autism, as well as recurrent

taxing circumstances to reflect some of the unique characteristics of autism that

families may experience. Of particular interest to this thesis is that Marshall and Long

used narrative techniques to examine the impact of these stressors and thus their study

contributes a unique insight into the caregiver experience. This thesis will build on

Marshall and Long’s work by using visual inquiry methods to offer new glimpses into

the light and shade of caring for children with ASD. This section of the review has

shown the complexity of caring for a child on the autism spectrum and the effect on

the entire family unit. The experience of the mother caring for her child is intertwined

with the dynamics of the family system as well as the nature of autism (Bitsika, et al.,

2013; Lutz, et al., 2012; Savage & Bailey, 2004). The focus of this thesis will now

tighten to explore specifically mothers of children with autism.


2.2.2 Maternal vulnerabilities

2.2.2.1. The centrality of the mother

This study explores how mothers of children on the autism spectrum use

photographic journaling as a reflective tool. This study wishes to acknowledge the

key role that many fathers play in caring for their children. This study also wished to

acknowledge the role both parents play in same-sex relationships. This study though,

will focus on maternal caregivers (or in same-sex relationships, the woman who

assumes the role of ‘primary caregiver’). The reasons for this narrowed maternal

focus are described below.

First, it is generally the mother who adopts the primary caregiving role of the

child - both caring for the child within the everyday home-based routine, as well as

facilitating support with professional support services, including allied health and

education (Bitsika, et al. 2013; Bourke-Taylor et al., 2010; Hodgetts, et al., 2014). It

is generally the mother who sacrifices paid and leisure time to caregiving efforts

(Hodgetts, et al., 2014; Ritz, et al., 2011). Large population studies show mothers are

primary carers in 94-98% of cases (Montes & Halterman, 2007). Mothers in a study

by Bitsika et al., (2013, p.540) reported being “stretched beyond their resources” more

frequently than fathers thus suggesting that the responsibility of caring for their child

with an ASD may be more intensely experienced by mothers.

Second, mothers and fathers are affected differently by the stresses related to

caregiving and have different coping processes (Bitsika, et al., 2013; Hastings &

Brown, 2004; Jones, Hastings, Totsika, Keane, Rhule, 2014). For example, Bitsika et

al. (2013) found mothers are significantly more anxious and depressed than fathers of

children with ASD. Also, the mediating factors between child behaviour and

psychological distress vary between mothers and fathers (Bitsika, et al., 2013; Hastings

& Brown, 2002; Hastings & Taunt, 2002; Jones et al., 2014; Lutz et al., 2012; Twoy,

et al., 2006). Finally, given the mother’s pivotal position in the family she acts as a

portal into the dynamics of the family and the health and wellbeing of other family

members (Bayat, 2007; Lutz, et al., 2012; Marshall & Long, 2010).

The centrality of the mother within the family unit and carer role necessitates

consideration of the family context, in addition to her individual profile (Bayat, 2007;

Hoefman, 2015; Marshall & Long, 2010). The literature confirms the impact of caring

for a child with autism on mothers’ physical, mental, and emotional health (Bitsika, et

al., 2013; Hodgetts, et al., 2014; Ritz, et al., 2011; Savage & Bailey, 2004). In keeping


with the parameters and focus of this thesis, this section explores the literature on how

child behaviour and the demands of caregiving contribute to maternal vulnerabilities.

Presenting literature on maternal vulnerabilities helps to illustrate the complexity

associated with caring for a child on the spectrum and elevate an understanding of this

population and the important contributions of the study.

2.2.2.2. Maternal vulnerabilities: child behaviour

Child behaviour is a significant predictor of psychological distress for families,

as well as mothers of children with ASD individually (Bromley, et al., 2004; Gray,

2002; Kuhn & Carter, 2006; Lutz et al.,2012; Savage & Bailey, 2004). The link

between the severity of child behaviour problems and maternal distress was examined

in a study by Kuhn & Carter (2006). The researchers surveyed 170 US mothers and

found that atypical behaviours in children negatively affect a mothers’ sense of self,

her wellbeing and efficacy, as well as how she interprets, experiences, engages and

responds to her child. Furthermore, unsafe and disruptive behaviours required constant

vigilance by the mother, often at the expense of her own health and relationships with

others. The impact of these behaviours on siblings, marriages/partnerships, as well as

the family system as a whole was also highlighted in a study by Lutz et al. (2012).

In Lutz et al.’s narrative study involving 16 US mothers of children with autism,

many expressed fears for their child's safety and relayed stories about their child’s

"wild" (p. 209) behaviours and how these tended to erode relationships. Some mothers

also felt such behaviours closed social outlets and forced them to stay home, resulting

in feelings of anxiety and social severance. Mothers’ feelings of stigmatization and

social isolation, which Lutz et al. (2012) describe as “the social dimension of dis-ease”,

are prominent across this literature. For example, Bromley, et. al. (2004), Savage and

Bailey (2004), and Hoogsteen and Woodgate (2013), all link mothers’ feelings of

isolation and distress with external judgement and reaction to their child’s (sometimes

anti-social) behaviours.

The theme of isolation is important to this study as photographic journaling may

build visual awareness of autism within the community and create possible resonance

between mothers with similar experiences. Further, photographic journaling may act

to support mothers against the stressors created through the child’s atypical behaviour.

Although behaviour is regarded as the most significant predictor of stress for mothers

caring for a child on the spectrum, the demands of caregiving create vulnerabilities on

many levels. It is necessary then to draw back to offer a broader review of how autism


may affect mothers of children with ASD. Tracing literature on caregiving demands

and the impact on occupational and leisure balance deepens understanding of this

population and promotes the value of this study.

2.2.2.3. Maternal vulnerabilities: caregiving demands and occupational and leisure balance

The nature of autism heightens caregiving demands and can fracture

occupational and leisure balance. Within the literature on caregiving, occupational

and leisure balance is considered a mediator to physical, mental, and emotional distress

related to caregiving efforts. Since autism is a chronic, uneven developmental and

neurological disorder without a cure, continual and intensive treatment and

behavioural support is required. This often becomes the primary responsibility of the

mother (APA, 2013; Bitsika, et al., 2013; Kuhn & Carter, 2006). The constant

demands of caregiving affect mothers’ physical health with mothers of children with

ASD reporting feeling “drained”, “burnt out”, and “exhausted” (McGuire, et al., 2004,

p.58). A survey by Giallo, Wood, Jellett and Porter (2011) of 50 Australian mothers

of children with ASD confirms that high levels of fatigue for these mothers equates to

high levels of depression, anxiety and stress. This finding is consistent with studies

by Meltzer (2011) who correlates poor sleep quantity and quality of mothers of

children on the spectrum (and poor child sleep quantity) with depressive symptoms as

well as poor parental experiences. Meltzer’s study further associates high levels of

fatigue with low parental self-efficacy, high parenting stress, and irritability.

In general, mothers of children with disabilities spend larger amounts of time

engaged in caregiving than mothers of typically developing children. This is

particularly so for mothers of children with ASD who spend an average of six hours

per day (Crowe & Florez, 2006; Rikz, et al., 2011). Research (including, Hodgetts, et

al., 2014; McGuire, et al., 2004; Rikz et al., 2011; Savage & Bailey, 2004) examines

how these demands impact leisure and occupational balance and potential implications

of these on mothers’ wellbeing. In a review of the literature pertaining to mothers of

children with ASD, Savage & Bailey (2004) confirm psychological distress arises from

the constant demands of mothers compromising their own occupational satisfaction to

meet others’ needs. Furthermore, Savage and Bailey note that limited occupational

roles combined with ongoing health costs can create financial burdens for mothers and

the family in general. Similarly, McGuire et al. (2004) found mothers of children on


the spectrum expressed confusion about self-identity due to their limited participation

in self-care, productivity, and leisure pursuits.

The impact of caregiving may not be straightforward. Rizk et al. (2011) used

interviews and questionnaires to compare the occupational and leisure social

engagement and health related quality of life (HRQoL) of mothers of children with

autism to mothers of typically developing children in the US. The research confirmed

that the mental HRQoL was significantly lower in mothers of children with autism.

Interestingly, the research also found that participation in more social and leisure

activities of interest was not associated with increased mental HRQoL. The study also

found the same for the relationship between occupational engagement and health. The

researchers propose that leisure and occupational demands may add to mothers’ time

pressures and responsibilities and thus decrease energy and satisfaction rates. This

finding is significant as it illustrates that the relationships between multiple demands -

the needs of family, caregiving, leisure and occupation - are complicated.

Offering further insight into HRQoL of mothers of children on the spectrum is a

2014 mixed methods study of 139 Canadian mothers by Hodgetts, et al. This study

found that HRQoL was impacted by autism support services: Discontinuity in autism

services was a significant predictor of disrupted occupational and leisure engagement.

Interestingly, Hodgetts et al. suggest that while some professional service providers

conceptually value family centred therapy, in actuality they often ignore the family

context and focus exclusively on the child. These findings resonate with earlier

studies, such as McGuire et. al.’s (2004), who called on service providers “to attend to

the alignment between individual mothers of children with disabilities, the specific

occupations they need or choose to do, and the environmental context in which their

lives are occurring (p.55).” McGuire et al.’s study, although not restricted to mothers

of children with ASD, is particularly interesting as it collected data from group

discussions and individual reflections of 23 US mothers of school aged children with

disabilities. As such, the findings offer rich insights into life with, and the impact of,

mothering a child with a disability. Such findings align with the intention of this study,

which was to uncover the nuanced experiences of mothers caring for their child with

ASD so as to drive congruent and thus effective supports for this population.

This section reviewed the key factors contributing to mothers’ feelings of stress,

depression, alienation, and isolation. Maternal vulnerabilities are multifaceted,

complicated, and unique to each carer and her family system. The literature on


maternal vulnerabilities tends to dominate understanding of this population, however,

this only conceptualizes one section of the caregiving experience (Phelps, 2009b).

There is also a small, growing, voice within the research field which points to the

positive experiences of caregiving and mothering a child on the spectrum, for example,

Bayat (2007); Green (2006); Hastings et al. (2005); King, et al., (2005); Marshall and

Long (2010) and Phelps, et al. (2009). It is now understood that these positive

experiences can coexist with the ongoing stress associated with caregiving (Hastings,

Kovshoff, Ward, et al., 2005; Whitehead, et al., 2015). More, positive growth can

develop from these stresses and challenges (Phelps, 2009b). To move beyond

perceiving and supporting mothers through the lens of vulnerability, it is important to

understand how and why some mothers associate with positive aspects of caregiving

and explore factors that may minimise vulnerabilities and promote feelings of

wellness. Reviewing literature on maternal wellness reveals the positive and negative

aspects of caregiving experiences and deepens understanding of this population. It is

necessary to the entire lived experiences of caregivers as this impacts the effectiveness

of interventions to support the child with ASD (Hoefman, et al., 2015).

2.3 ASD: MATERNAL WELLNESS

Maternal experiences of wellness and enrichment are underrepresented in the

caregiving literature yet these stories are important to explore. Of interest are the

personality traits and cognitive processes some mothers of children on spectrum use

to adapt to the complexities of caregiving. The primary focus of this thesis is to

understand the lived experiences of mothers of children on the spectrum. It is therefore

necessary to trace literature pertaining to the full breadth of maternal experiences -

vulnerabilities and wellness. Within the context and parameters of this project, this

review will unpack the key aspects from the literature on the factors thought to

contribute to maternal wellness. First, this section defines wellness and outlines the

importance of uncovering positive stories of caregiving. Exploring the literature

pertaining to wellness contributes to a richer appreciation of the nuanced experiences

of caregivers and further promotes the value of this study.

2.3.1 Understanding maternal wellness

2.3.1.1. Defining wellness

I use the term wellness as it encompasses a multi-faceted view of health,

encompassing physical, psychological, spiritual, social, economic, and the fulfilment


of roles and expectations (WHO, 2017). Such a definition considers the complex

interplay of factors influencing the lives of mothers caring for children with autism.

2.3.1.2. The importance of positive accounts and a balanced approach

The issues of caregiver strain dominate the literature focusing on mothers of

children with autism, yet, there are some mothers who consider themselves “blessed”

by the experience (Phelps, et al., 2009, p. 29). It is important to identify the positive

voice on mothering a child on the spectrum because positive stories: (1) buffer the

mother against potential health risks (Bitsika et al., 2013; Gill & Harris, 1991; Hastings

& Brown, 2002; Phelps et al., 2009; Phelps et al., 2009b) (2) offer hope for other

mothers raising children on the autism spectrum (Kuhn & Carter, 2006); and (3)

infiltrate societal views on persons on the spectrum and their care (King, et al., 2005).

Additionally, the WHO (2013) is clear in its call that both positive and negative

experiences of caregiving are required to create reflective policy and services.

Research is seeking to understand how some caregivers remain positive, or even

thrive, in the face of continued difficulties (Bayat, 2007; Hastings & Brown, 2002;

Kuhn & Carter, 2006; Rezendes & Scarpa, 2011; Phelps et al., 2009b). Of interest are

the personality traits and cognitive processes some mothers of children on spectrum

use to adapt to the complexities of caregiving.

2.3.2 Personality traits contributing to maternal wellness

Self-efficacy and resilience are personality traits identified in mothers who

associate with aspects of health (Bayat, 2007; Hastings & Brown, 2002; Kuhn &

Carter, 2006). Reviewing these traits (both within broader literature and more specific

ASD and maternal literature) and reviewing the research recommendations which

articulate best practice for supporting maternal wellness, promote understanding of the

lived experiences of mothers.

2.3.2.1. Self-efficacy

Self-efficacy is the belief in one’s abilities to influence events that affect their

lives and determines how one feels, thinks, motivates themselves and behaves in

specific situations (Bandura, 1977, 1986, 1989). Self-efficacy has been the focus of

significant empirical research, both in terms of general mental health, and within the

parenting domain. Self-efficacy is crucial to psychological wellbeing and reduces

psychological distress, including parental distress (Coleman & Karraker, 1998;

Hastings & Brown, 2002; Kuhn & Carter, 2006).


Hastings and Brown (2002) conducted pioneering research into self-efficacy

among parents of children on the spectrum. In a study involving 26 mothers (and 20

fathers) of children with autism, questionnaires were used to examine the relationships

between self-efficacy, psychological wellbeing and child behaviour. Results showed

that self-efficacy acts to buffer the impact of child behaviour on the mothers’ mental

health (anxiety and depression). In response to their findings Hastings and Brown

recommend designing interventions which increase feelings of self-efficacy as these

may have a positive, direct impact on maternal mental health.

Building upon this literature is research by Kuhn and Carter (2006) who

examined the link between self-efficacy and parenting cognitions (thoughts, attitudes,

beliefs, experiences about parenting role) in mothers of children with autism. Kuhn

and Carter coin the term “maternal self-efficacy” (p. 564). to describe feelings of

competency in the caregiving role. Their study captured survey responses of 170

American mothers in relation to the effects of maternal agency and autism knowledge

on self-efficacy. Interestingly, the study found that parenting self-efficacy was not

impacted by ASD knowledge (as hypothesised), but rather, was influenced by

wellbeing and a sense of agency. As such, the study recommended that maternal

support strategies focus on bolstering feelings of self-efficacy. The authors suggest

autism support services give mothers an opportunity to express themselves and in

doing so provide a “normative framework” (p.571) around feelings and responses to

mothering. A major limitation of this study was that it was a sample of convenience

with participants mostly from high socioeconomic background and two-parent

households. Thus, the findings may not reflect additional stresses and complexities

experienced by single-parent households; financial stress; ethnic backgrounds (Kuhn

& Carter 2006). This study used purposive sampling and invited mothers to express

their experiences in a three-week photographic journaling process. As a reflective

practice, photographic journaling may support mothers’ feelings of self-efficacy, as

well as promote a sense of commonality with others. The experiences of the mother

offer insights to service providers and may resonate with other mothers in similar

caregiving roles.

In 2011 Rezendes and Scarpa conferred the buffering relationship between self-

efficacy and maternal anxiety / depression and child behaviour. From their findings,

the authors cite limitations of the survey design in providing in-depth understanding

and thus called for further exploration into how ASD affects the parent-child


relationship. Importantly, Rezendes and Scarpa link the sharp increases in the rates of

autism with a sense of urgency to better understand mothers affected by ASD.

Certainly, the rate of autism has increased over the past decade and will likely continue

its upward trend (WHO, 2017). Thus, this study is relevant and timely. In addition to

self-efficacy, resilience is another key personality trait that may contribute to feelings

of wellness in mothers of children with ASD.

2.3.2.2. Resilience

Research is striving to identify the personal characteristics of mothers of children

with ASD who embrace healthy perceptions of their caregiving experience. Given the

constant, sustained stressors faced by this population, resilience has generated much

interest within the literature. Resilience is defined as the process of successful

adaptation and perseverance when faced with significant life challenges or adversity

(Whitehead, et al., 2015). The link between resilience and psychological and physical

wellbeing has been described as “compelling” (Gill & Harris, 1991, p. 131) and has

proved to have a buffering effect on anxiety and depression in the general population

(Fredrickson & Joiner, 2002). Interestingly, research now suggests that resilience is a

flexible and adaptive cognitive process, as opposed to a fixed trait (Whitehead, et al.,

2015). Moreover, research, such as the work of Ungar (2015) and Windle and Bennett

(2010) is currently extending an understanding of resilience beyond an individual,

cognitive quality toward a social, ecological perspective. This more pluralistic

perspective emphasises the relationship between individuals and the social and

physical environments that make resilience more likely (Ungar, 2015). Ungar (2015,

p14) defines resilience as:

A set of behaviours overtime that reflect the interactions between individuals and their environments, in particular, the opportunities for personal growth that are available and accessible. The likelihood that these interactions will promote well-being under adversity depends on the meaningfulness of these

opportunities and the quality of the resources provided.

Applying this socio-ecological perspective to the field of caregiving, Windle and

Bennett (2010, 2013) have formulated the Resilience Framework to illustrate how

individual, community, and social factors influence caregiver resilience.

A number of scholars examine the concept of family resilience and Walsh (1998,

2010), has completed a number of formative studies. Family resilience, she suggests,

is more than the ability to rebound from adversity but rather “involves struggling well,


effectively working through and learning from adversity, and integrating the

experience into the fabric or individual and shared life passage” (Walsh, 2010, p. 149).

In her work Walsh identifies several key factors which contribute to family resilience;

meaning making; affirming strength and a positive outlook; and spirituality and a

belief system. Drawing on Walsh’s Family Resilience model, Bayat (2007) and Bayat

and Schuntermann (2013) examine resilience in families of children with ASD. Such

findings add to, and continue to steer, investigations into how resilience may contribute

feelings to wellness in mothers of children with ASD.

Early studies by Gill and Harris (1991) found that resilience acted as a better

mediator to stress for mothers of children with ASD than social supports,

suggesting that internal attributes offer a more sustainable buffer to stress than

reliance on outside support structures (Gill & Harris, 1991). This finding is

pivotal to this study which examined how mothers used photographic

journaling as a reflective tool.

Adding to this literature on resilience is a 2013 Queensland study by Bitsika et

al. who looked beyond external support factors to discover the internal personal

characteristics that act as protective factors against depression and anxiety.

Questionnaire responses from 108 parents (73 mothers) of children on the spectrum

confirmed that resilience shields against stress, anxiety and depression. The

researchers concluded that “although the daily stress of parenting a child with an ASD

was associated with quite severe anxiety and depression, even relatively low levels of

resilience buffered against this anxiety and depression” (p. 533). In a more recent

Australian study, Whitehead, et al., (2015) also confirmed the link between resilience

and wellness in 438 females caring for a child on the autism spectrum. Resilience

(characterized by action-oriented strategies such as planning, acceptance, positive

reframing) contributed to psychological wellness while avoidant strategies

(disengagement, self-blame, denial, emotional venting) contributed to depressed

mood, anxiety, and stress symptoms. Whitehead, et al., (2015) found that caregivers’

internal experiences of resilience were partly determined by the wider society (that is,

perceived support and the quality versus quantity of that support). Thus, critical to

caregiver resilience is congruence between support agencies and the specific needs of

children and families affected by ASD. Whitehead, et al.’s (2015) study is of particular

interest to this thesis as photographic journaling will act as both an internal reframing

tool and a means to facilitate awareness and understanding of the experiences of


mothers caring for children with ASD. Also of interest to this study is qualitative

research that examines maternal wellness, as the studies outlined above were

quantitative in design.

The value of qualitative studies lies in the personalized language and stories of

caregivers as evidence of resilience. These studies evidence how resilience contributes

to maternal wellness and can build out of ongoing adverse circumstances. This is

illustrated in the above-mentioned study by Bayat (2007) which asked 175 US parents

(77% mothers) of children on the spectrum to provide written responses to 3 open-

ended questions: (1) to describe the positive and/or negative effects of autism on their

family life; (2) to describe the positive and/or negative effects of autism on their

personal life; (3) to describe their child. The answers revealed that despite the

obstacles faced by caregivers there was evidence of resilience with the data

“overwhelmingly” (p. 711) supporting positive aspects of raising a child with autism

and reported the experience to be “strengthening” (p.702). A later paper advancing her

knowledge on resilience and families of children with ASD articulates the importance

of meaning making in helping to shift the balance between vulnerability and resilience:

“Understanding the process of meaning making is central to promoting resilience in

families of children with ASD” (Bayat & Schuntermann, 2013, p. 416).

Similar findings were made in Phelps et al.’s. (2009) qualitative study into the

multidimensional impact of autism on 80 US parents (97% mothers) caring for

children on the spectrum. Through their responses the theme of resilience was

palpable leading Phelps et al. (2009, p.29), to comment on the caregivers’ “remarkable

ability to refocus their energy and locate strengths and abilities largely untapped before

autism came into their lives.” Similar threads of autism and resilience are found in the

US narrative study by El-Ghoroury (2012). Here the narratives embody the resilience

of parents and capture their desire to see beyond the significant challenges they face

and the diagnostic label of autism. All of these narrative studies richly contribute to

understanding the experiences of mothers of children with ASD and how some

mothers generate resilience enabling them to move beyond the complexities and

demands of their caregiving experience. This study builds upon these narrative

inquiries to further contribute to understanding and support of this population.

Why and how do some mothers steer towards healthy traits of resilience and self-

efficacy while others do not? This has become an important question within empirical

research. Research now understands that certain cognitive processes enable some


mothers to harness greater feelings of wellness. One of the key cognitive processes is

that of meaning making (Bayat, 2007; Walsh, 1998, 2010).

2.3.3 Meaning making: A cognitive process contributing to maternal wellness

Mothers of children with ASD face ongoing, complex stressors associated with

caregiving (Bayat, 2007; Bayat & Schuntermann, 2013; Hodgetts, et al., 2014; Ritz, et

al., 2011; Savage & Bailey, 2004). Some mothers demonstrate a sense of resilience

(Bayat, 2007; Biksika, et al., 2015; Walsh, 1998, 2010; Whitehead et al., 2015) and

self-efficacy (Hastings & Brown, 2002; Kuhn & Carter, 2006; Rezendes & Scarpa,

2011) in the face of these demands and by doing so buffer themselves against stress

and thus sustain feelings of greater. To enable these feelings of wellness to generate a

process of cognitive reframing is necessary. Meaning making is one cognitive process

that contributes to feelings of maternal wellness. (Bayat, 2007; Bayat &

Schuntermann, 2013; Myers, et al., 2009; Walsh, 1998, 2010).

Meaning making has drawn significant attention within empirical studies and

refers to the ability to assign meaning to difficult life challenges and view a potentially

negative, stressful situation as an opportunity or gift (Bayat, 2007; Bayat &

Schuntermann, 2013; Lutz, et al., 2012; Walsh, 1998, 2010). Research has shown that

those who are able to assign meaning to having a child on the spectrum are more

resilient and associate more closely with aspects of wellness (Bayat, 2007; Bayat &

Schuntermann, 2013; Myers, et al.,2009; Walsh, 1998, 2010). Formative theories on

resilience by Walsh (1998) identify meaning making as a key process contributing to

family resilience. One of the first studies to investigate the role of meaning making in

parental adaptation to caring for a child with ASD was conducted by Packenham et al.

(2003). This Queensland study gathered questionnaire responses from 59 parents (47

mothers) and found that those parents with higher levels of meaning making reported

better adjustment. The authors suggest support interventions include cognitive

reframing techniques to assist parents to reframe ASD as a strength, rather than a

weakness, in turn bolstering positive parenting experiences. This finding is consistent

with the above-mentioned studies of Bayat (2007), Kuhn and Carter (2006) and

Whitehead et al., (2015). The current research, with a unique investigative approach,

may also support mothers of children with ASD to shift towards a strength perspective.

Qualitative studies reveal personal insights into the caregiving experience and

the varied ways this journey may unfold for mothers. Understanding the struggles and

triumphs associated with ASD and the ways mothers mitigate stress to embrace


meaning and wellness contributes to our appreciation of caregivers and enables the

development of more congruent support strategies. For example, Myers, et al. (2009)

used narrative analysis to investigate meaning making in 493 parents of children with

autism in the US. Parents provided via an on-line questionnaire an open-ended

response to the question "How has your child on the autism spectrum affected your

life and your family’s life?” Findings showed that those who were able to assign

meaning to having a child with ASD were able to free themselves from a sense of

powerlessness and formulate possibilities for positive change. Further, families who

adopted meaning making strategies were more united and closer as a unit than those

who did not.

The process of meaning making is not an immediate fix but rather unfolds over

time. A narrative inquiry study by Marshall and Long (2010) highlighted the struggles

associated with ASD, but at the same time represented the journey mothers undertook

to reach a meaningful understanding of ASD in their lives. The study revealed

strategies mothers used to mitigate stresses, adapt, and make meaning over time. For

example, one mother commented how she “had to let go of prior expectations and learn

to find joy in other things” (p. 209). She “redefined what it meant to be “blessed”

(p.209) and considers herself “blessed despite the challenges of ASD” (p.209) and she

“developed a thick skin” (p. 209) against judgment and criticism from others. Indeed,

the choice of language used tells of the mother’s transformative journey. The study

highlights how maternal stressors have the potential to become catalysts for change -

inducing a reorganization and reappraisal on how mothers make meaning of their lives

with autism. This strengths-based meaning making approach becomes an effective

support strategy for mothers caring for their children with ASD and finds relevance

with the intent of this research project which is appraising the full range of experiences

of mothers (Marshall & Long, 2010). The researchers note that the small sample size

of five mothers may have limited the breadth of coping strategies revealed and also

suggest that different methods of eliciting narratives may impact on the kinds of coping

revealed. Regardless, Marshall and Long conclude that narratives contribute to our

understanding of mothers’ coping and understanding will continue to be advanced by

further narrative research in this area.

Narrative inquiry was also used by Lutz, et al. (2010) to further explore the

impact of autism on the family unit and how meaning making strategies contribute to

maternal coping. In the interest of capturing a lifespan perspective of autism 16


mothers of children aged 2-31 were selected and narrative methods captured the

breadth of emotions associated with maternal caregiving and how these emotions

change over time. Some mothers in Lutz et al.’s study articulated feelings of grief

around having to adjust their own life dreams and expectations around caregiving

demands and meaning making was found to be an important part of the maternal

adjustment process (Lutz, et al., 2012). Although Lutz’s study sought to capture

different stages of the lifecycle, participants were not studied longitudinally, rather the

children were in various life stages. The researchers note longitudinal data would

further develop understanding of how mothers’ journey towards coping, however, still

assert their findings contribute valuably to the field.

Mothers of children with ASD have a pivotal role in their child’s developmental

and treatment process: Mutually, children with autism influence maternal functioning

and health (Pakenham, et al., 2003). It is therefore important to invest in maternal

wellness. Drawing to the surface positive stories and creating strategies which

facilitate meaning making fosters to healthy feelings such as self-efficacy and

resilience in mothers of children with ASD. Such an approach holds the capacity to

alter perspectives and appreciate the value of caregiving and autism within our

communities. New ways of understanding the lived experiences of those caring for

children on the spectrum are necessary precursors to this end.

2.4 ASD: LIVED EXPERIENCES

This study intends to make visible the varied experiences of mothers of children

with ASD. The experiences of the mother are just as distinctive as the heterogeneous

nature of autism and the unique dynamics of her family system (Lutz, et al., 2012;

Marshall & Long, 2010; Phelps, et al., 2009; Phelps, et al., 2009b; Savage & Bailey,

2004). Colouring her story is an interplay of factors - for example, her health; her level

of social and occupational engagement; relationship status; economics; time and

resource availability; support systems; the way in which she embraces positive

attitudes towards her life; her orientation towards caregiving. Whilst this thesis will

continue on to categorize the literature into sections on ‘Maternal Vulnerabilities’ and

‘Maternal Wellness’, it is imperative to first note the nebulousness within this

literature. The literature, in particular narrative works such as Lutz et al., (2012);

Markoulakis, et al., (2012); Marshall and Long, (2010); Pakenham, et al., (2003),

illustrate that the emotions felt by mothers on the spectrum are not fixed neatly

between the poles of ‘vulnerable' or ‘well’, nor are these feelings static. The journey


from distress towards health is neither singular or straightforward. Rather, there is a

cycling, an overlap, a blurring of emotions, difficulties, triumphs, and personalities

which interact, unfold and change over time (Lutz et al.,2012; Markoulakis, et al.,

2012; Marshall & Long, 2010; Pakenham, et al., 2003). “Interchangeable” (p.8) is a

term used by authors Dowling, Nicoll, and Thomas (2004) to describe emotions felt

by caregivers. The authors posit that caregiver stories of grief are also stories of

acceptance, commenting “no emotion exists in isolation” (p.8). Phelps et al. (2009b)

also describe the co-existence of varying emotions found when exploring the

relationship between ASD caregiver stress, enrichment, and growth.

The duality in emotions is articulated in a study by Markoulakis, et al. (2012).

This was the first study to comprehensively examine the positive aspects of caring for

a child on the spectrum. Previous studies had noted benefits of caregiving but these

had not been the primary research purpose, nor had previous studies focused

specifically on autism. Through questionnaires and interviews Markoulakis et al.

(2012) explored the financial, social, familial, health, and occupational experiences of

eight mothers of children on the spectrum. Although their answers confirmed the

burdens of caregiving, they also revealed positive aspects to each area of questioning.

For example, despite the financial burden of raising a child on the spectrum, mothers

also felt gratitude for additional assistance offered. Similarly, despite social circles

becoming limited some also expanded with new friends. Familial relationships

sometimes strengthened under the strain of caregiving, as did altruistic feelings such

as tolerance and patience. The stress of caregiving ensured greater agency over their

own health while some mothers found new employment opportunities rose out of their

experience. Such findings shine light on aspects of caregiving which are not well

represented within the research corpus (Markoulakis et al., 2012).

The experiences of mothers of children on the spectrum are thus interwoven,

multifaceted and as such demand new directions in research and policy. This thesis

proposes the use of Visual Narrative Inquiry to capture the textured lived experiences

of a group of mothers of children with ASD. The Arts offer unique opportunities to

reflect the lived experiences of caregivers and provide valued insights to those

responsible for creating policy and support provisions.


2.5 THE ARTS: MEANING MAKING. REFLECTION. EXPRESSION

This research will demonstrate the significance of harnessing the lived

experiences of mothers of children on the spectrum and assess the influence of

photographic journaling as a reflective tool for this population. Photographic

journaling, photography, sits within the broader field of The Arts. This section

unpacks The Arts around the tenant of meaning making - a concept that finds

resonance with wellness and mothers of children on the spectrum, as outlined in

section 2.3.3. of this review.

2.5.1 ASD, meaning making, and The Arts

A nexus between The Arts and mothers caring for children with ASD is the

concept of meaning making. Central to The Arts is the process of meaning making

(Wright, 2013). Meaning making is an inevitable consequence of human interaction

with nature and culture; in a broad sense, it is the way in which we ascribe

understanding based on our experiences (Hein, 2015). This definition is similar to the

concept of meaning making identified within ASD literature as a caregivers’ ability to

assign meaning to difficult situations and view a potentially negative, stressful

situation as an opportunity or gift (Lutz, et al., 2012). Research (for example Bayat,

2007; Bayat & Schuntermann, 2013; Pakenham, et al., 2003) confirms significant

correlation between this attribute and a caregiver’s mental health. Meaning making is

related to understanding and is a uniquely individual and nebulous process. The Arts

presents as a powerful tool to assist mothers of children on the spectrum to make

meaning of their caregiving experience and enhance feeling of wellness.

2.5.2 The Arts as a meaning making process

The Arts is a form of meaning making, facilitating reflection and expression

(Wright, 2013). Such traits align with wellness findings and best practice

recommendations for mothers of children on the spectrum. Throughout history

humans have communicated, shared, represented their knowledge, thoughts, feelings,

and values and preceding written language the arts were the medium which held

societies together (Wright, 2013). Interaction with art is considered by some as “a

fundamental, biological need that defines our existence and human condition”

(Dissanayake, 1992, p170). Through The Arts we create a symbolic world and shape

and reshape, revise and revision our own hidden and subjective loves (Abbs, 2013).

Wright (2013) describes The Arts as a way of seeing; a unique means by which we can

give shape to intangible thoughts and ideas; an invitation to express unconscious


otherwise uncommunicative things. The Arts is “a vehicle by which we can express

our growing awareness of ourselves and the world in which we live” and thus provides

a powerful means for touching the deepest, most sacred and abstract part of our

existence” (Wright, 2013, p38.). Thus, The Arts connect cognitive, emotional, and

spiritual processes that are the key to deep seated knowledge and knowing: to meaning

and meaning making.

2.5.3 ASD: The Arts and research

A review of the literature indicates that there has been some use of The Arts

within the sphere of autism, however, these are limited. There are currently no studies

involving mothers of children on the spectrum and photographic methods. Given the

dearth of research in this area, some of the studies mentioned below involve

individuals on the spectrum as part of a larger study of individuals with other

developmental and intellectual disabilities. Still, the findings are of value.

There is evidence of researchers using fiction to create awareness,

understanding, and support for people with autism and other developmental

disabilities, for example Brenna (2013) and a more recent, 2016, study by Trzebinski,

Wołowicz-Ruszkowska, Wójcik. Interestingly, this 2016 study compared used self-

narrative techniques (construction of narratives, in diary form, asking participants to

write a story about their child’s situation) to capture the lived experiences of 364

mothers of children on the spectrum. The results showed narrative processes

contributed to meaning making and wellbeing in mothers. This study hopes to build

on this research by using arts-inspired reflective practice.

Database searches reveal some evidence of research using photography,

Photovoice, with individuals on the spectrum, but no evidence of using this process

with mothers exclusively. Photovoice is “a visual research methodology that puts

cameras in the hands of the participants, often members of marginalized groups, to

document, reflect upon, and communicate issues of concern with the goal of creating

social change” (Wang & Burris, 1997, p369). Often a feminist theoretical lens is

applied to the study as photography disrupts the power discourse as the participants

themselves tell their own story (Purcell, 2007). For these reasons Photovoice as a

research method is gaining traction within the fields of health and social sciences and

there is some evidence of using Photovoice within the sphere of ASD.


A 2012 US study by Walton, Schleien, Brake, Trovato, and Oakes used two

consecutive Photovoice programs over a 12 month period involving 22 individuals

with ASD, as well as other developmental disorders. Participants were asked to take

photos of people, places, and activities that were important to them and then met with

the researcher to discuss the images. The purpose of the study was to investigate self-

advocacy as well as long-term community change towards inclusion. The results

showed that participants “were empowered as leaders to share their voices regarding

barriers and facilitators of inclusion” (p. 177). Further, Walton et al., note that it is

only through having voices heard will underrepresented people begin to make an

impact in the design of policies and practices and research that affects their quality of

life. Moreover, the scholars conclude that it is not enough to simply make programs

available, that action steps need to be taken to ensure participation in research and the

development of mechanisms of support. They state that it is only through listening and

building on strengths that a truly diverse and supportive community can be cultivated.

This finding aligns with the aims of this project. Also pertinent to this thesis is a 2016

study that used Photovoice with young adults diagnosed on the spectrum. Scholars Ha

and Whittiker (2016) note how this process help participants ‘reframe autism’ and

identify and express their strengths. Cognitive reframing is an important wellness

strategy for mothers of children on the spectrum.

This current study combines photographic images with narrative (visual

narrative) and Kellman (2001) notes the potency of combining The Arts with narrative

techniques in terms of meaning making and reflection. Kellman (2001) notes that these

techniques offer a unique window into realities and how these are shaped; a unique

means of inventing, a method of thinking, a way of giving life to hopes and dreams.

Similarly, Bach describes visual narrative as a way of living and telling one’s stories

of experience, framing and reframing (Bach, 2007). Knowles & Cole (2008) note how

change and insight on the personal realm is increasingly being recognised as a key

source of corresponding social change. Given the large number of vulnerabilities

associated with mothering a child with ASD, this study which uses photographic

journaling as a reflective tool, may benefit maternal wellness.

2.6 CHAPTER SUMMARY

This thesis considers it important to draw to the surface all experiences - positive

and negative - of mothers caring for a child with ASD. While each caregiver story is

unique, research has identified trends in relation to vulnerabilities and wellness for


mothers of children on the spectrum. To understand the lived experiences of mothers,

the review began by tracing some of the key familial stressors before focussing in on

maternal vulnerabilities. Prominent across the literature was the how the nature of

autism contributes to feelings of vulnerability. The picture of caring for a child on the

spectrum is a multifaceted one and research shows that effective support rests on

understanding and alignment with individual carers and families.

Research asserts the need to cue into the different experiences of caregivers and

promotes multi-faceted and holistic support approaches for families. Consistent across

the research relating to children on the spectrum and their caregivers are

recommendations to provide more targeted interventions and support services for

parents of children with ASD. Research suggests that effective interventions for

children with ASD are dependent on caregiver health and active involvement and thus

a greater understanding of the lived experience of caregivers is necessary – yet

currently unexplored (Hoefman, et al., 2015; Stadnick, et al., 2015). Research suggests

that services need to provide mothers with specific, ongoing, post-diagnostic support

(Hastings & Brown, 2002; Kuhn & Carter, 2006; Rizk, et al., 2011) aimed at bolstering

feelings of self-efficacy (Gill & Harris, 1991; Hastings & Brown, 2002; Kuhn &

Carter, 2006; Savage & Bailey, 2004) and assist resilience (Bayant, 2007; Byat &

Schuntermann, 2013) and promote cognitive reframing strategies towards a strength

perspective (Marshall & Long, 2010). Importantly, services need to be reflective of

the lived ASD experience (Rizk, et al., 2011) ideally enabling mothers to “be heard”

(McGuire, et al. 2004, p. 58) and providing normative frameworks around the

emotional journey of mothering a child on the autism spectrum (Kuhn & Carter, 2006).

Such findings are consistent with policy directions recommendation by the WHO

(2013) who is clear in its call for those impacted by ASD to contribute to the

development of reflective policy and service provision. The Arts offer unique

opportunities to reflect the lived experiences of caregivers and provide valued insights

to those responsible for creating policy and support provisions.

Beyond supporting mothers through the lens of vulnerability, research has also

sought to understand how some mothers come to adopt more aspects of wellness.

There is also a small yet significant body of evidence that shows some mothers believe

that caring for their child with ASD is a positive experience. To date research has

sought to identify the internal attributes mothers who associate with wellness exhibit,

for example self-efficacy and resilience. Meaning making is identified as a key


cognitive process which helps to foster such traits. The caregiving experiences are

painted as diverse, nebulous, and complex. In response, the review has threaded an

argument that effective policy and support services need to be responsive to these

variant, lived experiences and greater understanding of this population is thus needed.

The increasing rate of autism and the pivotal relationship mothers share with their

children on the spectrum further emphasises the need for new understanding and

solutions.

Thus, Visual Narrative Inquiry methods were adopted by this study as this visual

method offered the innovation and capacity needed to capture the complexities of ASD

and caregiving and respond to the research questions. Visual narrative represented a

unique approach within both the sphere of autism and for maternal caregivers and the

results provided the fresh perspectives which have been called for. Chapter 3 will now

unpack the research design before the study’s findings are discussed in Chapter 4.

Chapter 3: Research Design 43

Chapter 3: Research Design

3.1 INTRODUCTION AND CHAPTER ORGANISATION

This study explored how mothers of children with ASD used photographic

journaling as a reflective tool. The literature review (Chapter 2) offered insight into

the heterogeneous nature of autism and traced the varying and nuanced ways that

caring for a child with ASD impacts families, and particularly mothers. Leading health

bodies and policy drivers call for the contribution of caregiver experiences to help

shape supports and services, further emphasized by the increasing rate of ASD. New

ways to convey the textured experiences of mothers afford fresh insights into ASD and

caregiving. This chapter outlines the Visual Narrative design adopted by this study.

The literature review posits that the bulk of the research involving mothers of

children with autism has been quantitative in nature (Marshall & Long, 2005).

Qualitative methods afford the capacity to capture human behaviours and emotions

that quantitative approaches cannot (Krausz & Meszaro, 2005; Lutz, et al., 2005;

Marshall & Long, 2005). Whilst all research is valuable, qualitative research methods

are best able to capture the lives of mothers caring for children on the spectrum.

Through the use of Visual Narrative methods, participants in this study were asked to

take a number of photographs over a 3-week period and then narrate and unpack these

images with the researcher in a semi-structured interview. The data, that is the

photographs, captions (if supplied) and interview transcripts, were then analysed using

Braun & Clarke’s Thematic Analysis framework. Results provided new insights into

the lived experiences of mothers of children with ASD.

The Visual Narrative design humanized mothers’ experiences by shifting the

focus onto individual, storied lives and away from numerical values, generalisations,

and replication of data findings, which are typical characteristics of quantitative

approaches (Krausz & Meszaro, 2005). The focus on daily moments offered details

to broad understanding of maternal experiences (Smith, et al.,2009). This move away

from trends and trajectories produced findings of potential value for families who are

affected by ASD and the policy makers/service providers who support them.

Essentially, this chapter is organised into two parts. The first half (Sections 3.2

and 3.3) outlines the methodological literature upon which this study was designed;

44 Chapter 3: Research Design

starting broadly with literature on qualitative research and narrative inquiry methods

before focusing on visual methods. The previous chapter (Section 2.5) broadly

unpacked The Arts in relation to autism and meaning making, while this chapter

discusses photography as a tool for research and reflection. Photography in this study

acts as both the methodology and instrumentation. This literature base provides

justification for the chosen research design which is the focus of the second part of the

chapter.

Section 3.4 begins by exploring intentional research design elements which were

pivotal to satisfying the intent of the research and enhancing the overall quality of the

project. The section restates the research questions and purpose and identifies research

paradigm before outlining the study’s procedures and timeline. Important ethical

considerations are detailed in 3.5.; participant profile and recruitment processes are

specified in 3.6; with data collection in 3.7. The focus of this study was on the lived

experiences of mothers, yet of equal concern was ensuring rigour to maximize the

potential of this research to influence policy and industry. Thematic data analysis

techniques contributed to achieve these ends. Section 3.8 details the analytic process

and section 3.9 asserts the study’s trustworthiness before a summary of the chapter is

provided at the conclusion.

3.2 RESEARCH METHODOLOGY

This section examines the research methodology and the rationale for using

Visual Narrative Inquiry methods to answer the study’s research questions. The

prevalent, complex, and dynamic nature of ASD and caregiving necessitated

innovative research design and methods (Lutz, et al., 2012; Markoulakis et al., 2012;

Marshall & Long, 2010; Savage & Bailey, 2004; Phelps, 2009). Visual Narrative

Inquiry methods offered the capacity to capture the nuances of ASD and address the

research questions (Bach, 2000; Clandinin & Connelly, 2000; Lincoln & Denzin,

2011). Current understandings of the impact of caring for a child on the spectrum draw

from quantitative research studies with contributions from qualitative research papers

smaller in number, mostly drawing on narrative techniques. Searches of major

education and health databases confirms that Visual Narrative Inquiry had not been

used specifically with this group. The value of employing this method is justified

within a review of literature on qualitative research, narrative inquiry (Clandinin &

Connelly, 2000; Lincoln & Denzin, 2011; Hays & Singh, 2012; Knowles & Cole,


2008; Myers et al., 2009) as well as visual methods (Bach, 2000; Clandinin &

Connelly, 2000; Langman & Pick, 2018; Wang, 2003).

3.2.1 Qualitative research

To date, the vast majority of the research relevant to the topic of autism and

caregivers is quantitative, yet qualitative techniques were able to capture both the

complexities and the contexts associated with caring for a child with ASD (Myers, et

al., 2009; Krausz & Meszaros, 2005; Lutz, et al., 2005). As illustrated in the previous

chapter, a large number of scholars have used techniques such as surveys to identify

variables (and relationships between variables) which positively and negatively impact

on maternal vulnerabilities and wellness (for example Bitsika, et al., 2913; Whitehead,

et al., 2015). Scales, instruments, and (positivist) transactional frameworks have been

used to investigate the stress/coping impact of ASD on mothers (for example, Gill &

Harris, 1991; Hastings & Brown, 2002; Kuhn & Carter, 2006; Meltzer, 2011;

Rezendes & Scarpa, 2011). This trend is consistent in wider research about families

and mothers of children with disabilities completed, but not included, within the

confines of this thesis (for example, Bonis, 2016; Hoffman & Wallace, 2017; Msall,

Avery, Msall & Hogan, 2007; Nepal, Brown, Ranmuthugala & Percival, 2009; Singer.,

2006).

Without questioning the importance of the research undertaken to date (all types

of research are needed in order to construct an accurate picture of phenomena) this

thesis considered the value of qualitative analysis, and specifically Visual Narrative

Inquiry using photographic journaling as a data collection method (Phelps, et al.,

2009). Qualitative methods captured the diversity of experiences and nuances of

humanity that cannot be quantified (Clandinin, 2007; Lutz, et al., 2005; Krausz &

Meszaros, 2005; Marshall & Long, 2005; Phelps, et al., 2009). Further, qualitative

research deepened understanding beneath mere facts and findings to examine

motivations and reasons (Clandinin, 2007; Lincoln & Guba, 2011). In relation to ASD,

researchers such as Myers et al. (2009) state that it is not enough to simply state or

know that raising a child with autism compounds parental stress or affords

opportunities to grow: What is important is understanding the how and why such

perspectives are arrived at. Narrative research techniques offered such details and

insights and delivered rich data through the participants’ own words, allowing insights

into the emotional and cognitive processes of mothering a child on the autism spectrum

(Myers et al., 2009).


3.2.2 Narrative inquiry

Narrative inquiry is considered both the phenomenon and the research method,

examining experience through experience (Connelly & Clandinin, 2000). In narrative

research, stories represent the data and the focus is on a microanalytical picture (an

individual) as opposed to more macro cultural themes (Lincoln & Denzin, 2011). A

review of existing qualitative research with mothers of children with autism, as well

as wider health, disability, and social science fields where this form of research is

increasing in popularity, confirms the potential benefits of using narrative inquiry

methods (Clandinin, 2007; Knowles & Cole, 2008; Lincoln & Guba, 2011). Within

the sphere of ASD, understanding of the experiences, needs, and demands of

caregiving have been found to be enhanced when they are grounded in real life stories

(Phelps, et al., 2009).

The advantage of adopting narrative (including Visual Narrative) research

methods stemmed from the capacity of this method to capture the heterogenous nature

of ASD and the nebulous journey of caregiving (Phelps, et al., 2009). In a unique study,

Krausz and Meszaros (2005) used narrative methods to retrospectively tell the

experiences of one mother of a child with ASD over an 18 year period. This method

allowed Krausaz and Meszaros to depict the mother's personal and human dimensions

and reveal how her story changed over time as her child matured and lived through

different experiences. The intimate sharing of experience enriches the data collection

process and benefitted this study with its intent on uncovering new perspectives on

mothering.

Narrative inquiry holds benefits for the participant as well as the researcher.

Many scholars, (including Clandinin, 2007, Lincoln & Guba, 2011, Hays & Singh,

2012, Knowles & Cole, 2008), refer to the benefits derived from affording participants

an opportunity to tell their stories. Empirical studies involving mothers of children

with autism reflect these benefits. For example, McGuire, et al. (2004, p 60) created a

support group for mothers to facilitate data collection and noted participants’

comments about how they often “came to the group to be heard.” El-Ghoroury (2002)

traced how narrative inquiry enabled research participants to see beyond the label of

ASD towards the multiple strengths inherent within the child. Important too is El-

Ghoroury’s observation that this reframing may also occur for readers of the research.

Similarly, Sirota (2010) states how narratives bridge the dialectic and provide

opportunities to reflect upon order and unpredictability as co-existent life forces.


Narrative techniques were found to invite reflection and opened a door to consider new

perspective on life with autism. Fresh understandings were bestowed to the researcher,

as well as the participants. While the primary focus of this study was not to act as a

therapeutic intervention, it is important to know that narrative research methods

provide potential benefits for use with this group. Beyond narrative inquiry, visual,

arts-based practices are also gaining traction within qualitative research. For mothers

of children with ASD, such practices look to further deepen exploration of their

caregiving experiences.

3.2.3 The Arts in research

Increasingly, The Arts are securing a place within qualitative research (Knowles

& Cole, 2008). To justify the rationale for use of Visual Narrative research methods

in this study, it is necessary to broadly cover the valuable contribution of The Arts,

particularly the visual image, to the research process. The merging of The Arts into

qualitative research methodologies is driven by The Arts’ unique capacity to represent,

express, and reflect on the world (Knowles & Cole, 2008). Knowles and Cole note that

the Arts are usually considered as emotional or ornamental and The Arts’ connection

to epistemology has often been overlooked. Knowledge in an empirical world was (is)

aligned with measurable, logical, and synthetic propositions (Knowles & Cole, 2008).

In the pursuit of knowledge, of new ways of conceptualising and knowing beyond

traditional approaches, story writing, drama, dance, and visual arts have all been used

as research methods (Knowles & Coles, 2008). The famous quote by Polanyi (1967)

epitomises the value of The Arts in research, "we know more than we can tell.”

The use of visual images within qualitative research has gained particular

traction within sociological and health fields (Weber, 2008). An image can contain

multifaceted layers of meaning; posit contradictions, new propositions, and point to

the paradoxical nature of human experiences (Weber, 2008). The ability of an image

to capture, convey, question, and purport abstract and concrete thought has led to the

innovative use of visual images within fields searching to find new ways of

understanding and supporting complex human conditions (Weber, 2008).

Photography is one tool for capturing such visual images.

3.2.4 Photography in research

The use of the photograph in qualitative research is of particular relevance to this

thesis, as participants took photographs and discussed the images with the researcher.

Close (2007) examined the history, challenges, and values of the photograph as a


qualitative research tool. Photography was first used within ethnographic studies as an

observation tool - a static representation of the truth (Close, 2007). Since then

photography has moved towards a more participatory and subliminal mindset as a tool

to engage and gather insight from subjects (Close, 2007). Methods such as Photovoice

and Visual Narrative Inquiry (of relevance to this thesis) directly involve subjects in

the photographic process. Thus, the power of inquiry is shifted from structured

methods and potential researcher influence onto the participant becoming a co-

researcher and the researcher a co-participant into a world previously unseen (Bach

2007; Clandinin, 2007). In this study, photographic submissions allowed new

perspectives into the nature of ASD and how the child influences the maternal lived

experience.

Photography is known to enhance the relationship between participant and

researcher and enables new understanding (Close, 2007; Harrison, 2002).

Photography facilitates dialogue and trust by dismantling barriers between researcher

and participants and thus enabling a more free-flowing, deeper narrative to occur

(Bach, 2001; Clandinin & Connelly, 2000; Latta et al., 2014). Photography in research

has been described as “both communicative and generative" (Close, 2007, p. 35).

Similarly, Rampton et al. (2007, p. 427) notes: “the atmosphere created as photographs

are contemplated and discussed builds rapport and facilitates expression of thoughts

and emotions that might not otherwise emerge”. Additionally, photographs furnish the

participants with an explicit starting point and can sharpen memory, facilitating focus

and meaning that may be lost when simply interviewing (Bach, 2001; Clandinin &

Connelly, 2000; Clark-Ibáñez, 2004). Photographs may also provide a channel for

participants to tell their stories, whereas formal, structured research questions may

overwhelm some participants (Hanna, Jacobs & Guthrie, 1995).

There are some barriers to using photographic methods in research, particularly

regarding consent, ethics, and data representation, however, these tend to be

outweighed by the value photography can add to the research process (Bach, 2007;

Close, 2007). The value of photography extends beyond pretty pictures (Cosdyn &

Reynolds, 1982). Photography has the power to both educate and impact (Wang,

1999). To examine the lived experiences of maternal caregivers, participants in this

study took photographs of their daily life, then worked with the researcher to make

meaning visually and narratively. Photography was found to help to build a trusting

relationship between the researcher and participants and encourage narrative flow. The


photographs acted as both research data and a prompt to illicit the narrative response

and the result was a rich insight into the lived experiences of mothers of children with

ASD.

Thus, echoing literature by Bach (2007; 2008) this study created new ways of

looking and thinking about the lives of mothers of children with autism. These new

perspectives on caregiving and disability may transform the social relationships with

disability and not further entrench a disability/ability binary or caregiver stereotype

(Ignagni & Church, 2008). Specifically, this project used Visual Narrative Inquiry

methods.

3.2.5 Visual Narrative Inquiry

Visual Narrative is “an intentional, reflective, active human process in which

researchers and participants explore and make meaning of experience both visually

and narratively” (Bach, 2007, p.281). Visual Narrative Inquiry is built on dialogic

exchange (Bach, 1988). This process is not simply about adding a photograph to a

research project but is a means of deepening exploration of the experience. There is a

narrative beyond the picture and this is drawn out through a collaborative process

between the researcher and participant (co-researcher) (Bach, 2007; Clandinin &

Connelly, 2000). Theorists Clandinin and Connelly (2000, p.286) describe the co-

construction as a “calling back and forth”. There is a layering of truth, a reformulation

of inquiry as opposed to a sense of problem definition and solution (Bach, 2007;

Clandinin & Connelly, 2000). The process is recursive. For this reason, Bach (2001,

p. 3) describes photography as a “verb”, an act of composing story; a “stepping stone”.

In this Visual Narrative study, five mothers were asked to take daily photographs of

their lives over the course of three weeks. The mothers were then asked to narrate and

describe the photographs and the feelings or events underpinning each image. In such

a way, Visual Narrative lends itself to be a reflective tool. Visual Narrative then is

both a methodology as well as a tool of data collection and reflection (Bach, 1998;

Clandinin 2007). Thus, a discussion justifying the effectiveness of photography as an

instrument in research and reflection follows.

3.3 INSTRUMENTS: PHOTOGRAPHY AS A RESEARCH AND REFLECTIVE TOOL

Photography in this study represented the methodological process and the

instrumentation and thus there is overlap when purporting the value of photography as

a research and reflective tool. In an effort to avoid repetition, this section crafts


justification for the adoption of photography and focusses specifically on research that

has used similar instrumentation within the disability sector. This broader disability

literature promotes the contribution of photography to research.

3.3.1 Photography as a research tool

Photography as a first-person research tool involves placing the camera in the

hands of the research participants to capture life from their perspective (Bach; 1998,

2001, 2007; Kellman, 2001; Knowles & Coles, 2008; Wang & Burns, 1997). In this

way, photography is able to produce a rich array of data not available by other methods

(Kellman, 2001; Knowles & Cole, 2008, Wang & Burns, 1997) enhancing the

dialectical exchange and thus contributing to the data collection and analysis processes

(Bach; 1998, 2001, 2007; Lassetter, Mandleco, Olsen and Dyches, 2007; Latta et al.,

2014; Wang & Burns, 1997). A handful of studies have used photography to gain

access to the lives of those living with or caring for those with a disability and

reviewing these further asserts the value of using photography in this study. For

example, in a 2007 study Rampton, et al., used photography to capture important

symbols in the lives of 16 siblings living in US families raising a child with Down

Syndrome (CWDS). The study gave insight into the importance of family to siblings

of CWDS, with the researchers noting that the use of photography improved

communication and rapport between the researcher and the young participants and thus

drew out valuable perspectives which could not have been afforded by other means.

Additionally, the researchers commented that the data gathered from siblings’

perspective “was a powerful reminder to professionals that siblings’ views of their

experience are important and may differ from what professionals see as important” (p.

438). This finding is critical to the value of the project presented in this thesis – there

are many potential benefits of uncovering the perspectives of mothers of children on

the spectrum, in order to educate and develop congruent and effective supports for

families impacted by ASD.

A 2007 study by Lassetter, et al., involving 15 parental dyads raising children

with disabilities echoes these findings. In their study, the value of using photography

is underscored by this research method offering contextual insight into family and the

personality of the child with autism. Similarly, Latta et al. (2014) conducted a

photographic study with 14 siblings of children with ASD. Again, the researchers

commented on how the photographs acted as a dialectic bridge enabling

communication flow and deepening narrative data collection to afford new insights


into life with ASD. Importantly, Latta et al., flagged how this unique insight helps

service professionals move beyond their assumptions of ASD to understand the impact

of the disorder and provide more reflective support to families.

Facilitating understanding, advocacy, and long-term community change was the

focus of two US studies using photography with individuals with ASD. Walton, et al.

(2012) and Ha and Whittiker (2016) both used photography to raise awareness of the

experiences of ASD and create direct impact on the design of policies and practices

that affect the participants’ quality of life and feelings of inclusion. The photographs

acted to create transparency and change at societal level as well as cultivated internal

change by orientating participants towards their personal strengths and helping to

reframe their autistic identity. Enabling participatory exchange and empowering voice

are the keystone benefits of using visual research methods (Wang, 2003).

As posited by Rampton, et al. (2007) photography has the capacity to enhance

self-awareness through both the process of taking photographs and the process of

reflecting on images taken. Photography then, is not just a vehicle of expression or

documentation, nor is it just a means of aesthetic creation - it is a tool for self-reflection

(Annear, 2015). Reflection is a key phenomenon being examined in this thesis.

3.3.2. Photography as a reflective tool

This study examined the lived experiences of mothers of children with ASD and

how they use photographic journaling as a reflective tool. This section defines

reflective practice and considers the benefits of using photography as a reflective tool

in this study.

The term reflection means to give serious thought or consideration to something

(Oxford Dictionary, 2016). There is much debate over the definition, function, and

processes of reflective practice (Clara, 2015). This thesis does not wade into this

ambiguity, but rather will draw together the common threads of what reflective

practice is across the disciplines. The intent is a broad understanding of what reflection

is and how this may be of benefit to mothers of children with ASD.

Reflective practice is an active process aimed at understanding, improving, and

transforming ways of thinking and working (York-Barr & Sommers, 2001). Both

personal and contextual factors influence the process and outcome; reflective practice

can occur in different ways for different reasons (York-Barr & Sommers, 2001).

Reflective practice is popular within the spheres of business, health care, and


psychology and has found particular traction within the field of education as a process

of continuous learning for teachers and students (Clara, 2015; York-Barr & Sommers,

2001; York-Barr, 2016). Dewey is frequently recognized as the foundational influence

on reflection in education, however, his ideas build on much earlier works of Eastern

and Western philosophers and theologists including Plato and Buddha (York-Barr &

Sommers, 2001). The term reflection is particularly important within Christianity with

followers encouraged to create quiet time to reflect. Reflective practice across all

modalities transforms relationships with self, others, work processes, and the world in

which we live (Clara, 2015; York-Barr & Sommers, 2001). Reflection requires a

deliberate pause, a purposeful slowing down and it is within this pause that a sense of

psychological space can be created and a more open perspective held (Clara, 2015;

York-Barr & Sommers, 2001). Through this sense of cognitive space moves an

impetus for new ways of being and actioning our lives (Clara, 2015; York-Barr &

Sommers, 2001). Reflective practice then involves higher order thinking, moving

beyond isolated facts, events, situations, to consider a broader context. Importantly,

reflective practice is an active process - a process that leads to transformation only

when new perspectives are deepened through new actions (Clara, 2015; York-Barr &

Sommers, 2001). Reflective tools and their use in the context of ASD are now outlined.

3.3.2.1. Reflective tools

The most popular reflection tool may be a diary or a journal - the act of writing

or narrating ushers in that space to open to new ways of being and doing (Clara, 2015;

York-Barr & Summers, 2001). However, there are limitations with this language-

based cognitive approach as reflections may become mechanistic or reductionist and

thus superficial (Harvey, et al., 2012). The participant may be limited by their ability

to write or form their thoughts and feelings into words. Innovative reflective tools

offer new ways to construct knowledge and represent understandings; blogging and

microblogging and arts-based practices for example (Harvey, et al., 2012). Arts-based

tools and practices in particular are a “heuristic through which we deepen and make

more complex our understanding of some aspect of the world” (Barone & Eisner,

2012, p. 3). Evidence of reflective practices within the autism sphere are limited, and

an even fewer number of studies have been conducted with mothers of children with

ASD, however, the benefits of using this approach are evident.


3.3.2.2 Reflective tools and ASD

While some studies may use narrative techniques with mothers of children on

the spectrum, only a select number of studies have used reflective tools with this group.

A study by Smith et al. (2009) used daily-diary techniques to examine the day-to-day

experiences among mothers of adolescents and adults with ASD. The study recruited

96 co-residing mothers to participate in an 8-day daily diary study and reported on

their daily experiences. The diary consisted of a 15-20-minute telephone interview at

the end of each day.

The daily diary technique afforded valuable insights into the experiences of

mothers caring for children on the spectrum and also supported the wellbeing of

participants. Smith et al. (2009) noted that the reflective technique allowed for

examination of the everyday experiences of the mother, as well as the within-person

processes associated with those experiences and how these concurrent and cumulative

experiences contributed to wellness. Interestingly, Smith, et al. (2009), state that unlike

previous studies which have relied primarily on global measures of parental stress and

wellbeing, daily accounts provide a nuanced view and insight into the particular factors

that make caring for a child with ASD a unique experience. A recent study by

Trzebinski et al. (2016) used self-narrative techniques to capture the lived experiences

of 364 mothers of children with ASD. Trzebinski et al.’s study showed the intricacies

of mothering a child with ASD and harnessed results in relation to wellness.

This project also contributed insights into the lives of mothers via reflective

techniques and photographic methods that have made these experiences visible. The

portability and convenience of this data collection method aligned with the time

constraints on mothers of children with autism and helped ensure data collection

requirements are fulfilled and of quality (Annear, 2015). The visual data collected

transformed the perceptions of participants and made more accessible an

understanding of ASD and the nature of caregiving. Sections 3.2 and 3.3 have provided

justification for using Visual Narrative Inquiries and esteemed the value of

photography, which acted in this study as both a methodology and an instrument.

Upon this literature base, the research was designed, and a detailed description of this

design is presented in Section 3.4.


3.4 RESEARCH DESIGN

This Visual Narrative study asked five mothers of children with ASD to

participant in a three-week photographic journaling exercise, taking a minimum of one

photograph per day to reflect their daily lives. The focus of the project was on the

mother, not the child, and the photographs were to symbolically or literally represent

the thoughts, feelings, or events which characterised their day. The mothers emailed

images to the researcher on a weekly basis and after 21-days each mother discussed

the images in a semi-structured interview. Both photographic and narrative data were

analysed. The research design was considered within the time and resource limitations

of a Masters of Research project. Further, design was sensitive the vulnerabilities

inherent in the participant group and considered the most effective way to fulfil the

research. To satisfy these requirements a number of intentional design decisions were

made. This section discusses some of these key considerations and then moves to

outline the procedures and timelines which framed the project through to completion.

For clarity, paper will first restate the research purpose and research questions and

identify the paradigm which underpinning the study.

3.4.1 Restatement of research purpose and questions

The purpose of this research was to explore the lived experiences of mothers of

children with ASD to enable new perspectives to transform social relationships with

autism and caregiving and help shape effective policy and service provisions.

Secondarily, and in pursuit of a strength-based approach to caregiver research, the

study investigated how mothers used photographic journaling as a reflective tool.

This research asked: What are the lived experiences of mothers of children with ASD?

With sub-question: How do mothers of children with ASD use photographic journaling

as a reflective tool?

3.4.2 Research paradigm: Participatory

To satisfy the intent of this research and answer the research questions, the study

drew from the participatory paradigm (Lincoln & Guba, 2011). In this paradigm,

participants are considered at the centre of the research process, directly

capturing/telling of their daily experiences (Clandinin, 2007). Pivotally, it is these

experiences deemed invaluable to the research process. After taking a collection of

photographs, each mother narrated and unpacked the images. She was considered a

co-researcher, creating dialogue and knowledge in relation to this phenomenon


(Lincoln & Guba, 2011) and thus represented a “living knowledge” (Lincoln & Guba,

2011, p.106). Her lived experience was seen as a practical and experiential knowing

(Lincoln & Guba, 2011) and as such, the ‘truth’ resided in the mothers’ stories, not in

research statistics. This ‘truth’ is considered subjective; co-created and a continuous,

fluid conversation between the researcher and the participants (Clandinin & Connelly,

2000; Kilgore, 2001).

3.4.3 Key research design considerations

The research purpose and participants were key considerations within the design

process. To most effectively capture the lived maternal experiences, the photographic

process was designed to span a three-week period to enable mothers time to reflect on

their experiences as well as capture some of the variances associated with raising a

child with ASD. While capturing the nuances of caregiving was important, the

facilitation of a trusting relationship between the participants and researcher was

considered equally important and this timeframe provided foundation for developing

relationships of trust and openness. Given the personalized nature of this research

approach, it was imperative that participants felt safe and comfortable with the project

in order to share their experiences openly. The use of photography was considered to

contribute to this end (Bach, 2001; 2007; Clandinin & Connelly, 2000; Close, 2007;

Latta, et al., 2014). Further, the quality of the narrative hinges on this relationship

(Bach, 2007) and in this research an intimate level of sharing flowed. To further

enhance this relational foundation regular opportunities for the researcher and

participants to connect were worked into the schedule (for example, email/phone

contact to confirm interest in the study, arrange screening interview, secure selection,

obtain consent forms, plus weekly emailing of photographs). No data were collected

at these points, the intent was of facilitating a relationship of trust and ideally

deepening the narrative data collected (Bach, 2007).

In addition to regular meeting points, the spanning of data collection over 3

weeks, and emailing of the images on a weekly basis enhanced data familiarisation

and research/participant relations. The photographic data were preliminarily reviewed

at the close of each week and thus provided insight into each participants’ stories prior

to the conduct of the semi-structured interview. This knowledge enabled more

effective crafting of lines of inquiry and steering of the interview process. In addition,

this added familiarisation assisted the data analysis phase. Certainly, I felt that the

combination of the time-frame and the Visual Narrative method afforded semiotic and


narrative revelations into some intimate aspects of the maternal lived experience that

I am not sure would have been covered if I were to have ‘gone in cold’ in an isolated

one-hour timeslot.

3.4.4 Procedures and timeline

Research design can be divided into three phases – recruitment; data collection;

data analysis. As stated above, there are elements of overlap between data collection

and analysis phases, however, broadly, the study moved through these phases. The

phases, procedures of the study are listed below and timelines framing the project are

shown in Table 3.1.

(1) Recruitment began following ethics clearance and focused on finding and

selecting participants who satisfied the selection criteria. Give the limited

number of participants purposive sampling was used. Section 3.5 details ethical

considerations and Section 3.6 details recruitment processes and participant

selection.

(2) Data collection phase involved 21 days of mothers participating in

photographic journaling processes, followed by a semi-structured interview.

The interview transcription was then sent to the mother, who checked and

confirmed accuracy. At this time the mother was also asked to nominate

approximately three photographs she felt were most illustrative of her journey.

She was also offered the opportunity to provide a final reflection. Section 3.7

will unpack data collection.

(3) Phase three data analysis followed. Section 3.8 further discusses this phase.


Table 3.1

Procedure and Timeline for Study

Phase Timeline Action Description October 2017 Confirmation March 2018 Ethical clearance QUT Recruitment March – April

Recruitment flyers distributed

Information disseminated to Aspect, Mid-Coast communities, Carers NSW

May 2018

Applications close Expressions of interest were collated, suitable applicants highlighted and contacted to arrange a screening interview. Emails were sent to those who did not meet the selection criteria.

May 2018

Selection interview: Purposive sampling

The pool of potential applicants was contacted via phone/email to confirm suitability and willingness to participate. The interview was conducted at a convenient time and via telephone.

May 2018 Selection notification. Information packs distributed

Via email Consent forms returned

May 2018 Reminder email

Data Collection

June 2018 Study Commenced Week 1

Email contact Photographic journal. Participants asked to email through their photographs for week one. Photographic requirement was 1/day. Email was also an opportunity for participants to build rapport, check in. Researcher collated and reviewed photographs at the end of the week. Broad observations made.

June 2018 Week 2

Email contact Photographic journal Emailing of photographic images, as above. Email sent to arrange day/time for semi-structured interview. Time and location/mode details as nominated by mother and negotiated / agreed upon by researcher.

Week 3 Email contact Photographic journal Emailing of photographic images, as above. Interview reminder/ confirmation email sent, including Zoom interview link. Copy of photo index card sent.

Week 4 Semi-structured interview: Conclusion of study

Semi-structure interview, approximately 1-hour duration. Interview conducted via phone/zoom. Interview questions/structure based on broad observations of photographic data sent in over the 3-week period.

July 2018 Data checking Interview transcribed Week 6 Data checking Interview transcribed

Week 7 Data checking Interview transcribed and emailed to participants. Mothers check data for accuracy Opportunity to alter any information; add new information; provide final reflections. Email back to researcher. Researcher to resend data for re-checking, if necessary.

Data Analysis

July 2018 Thematic Analysis

As per Braun and Clarke (2006) framework

Final November December 2018

Thesis submitted and presentation


Given the inherent sensitive nature of the research and the inherent

vulnerabilities with the participant group, ethical considerations were imperative.

These are now discussed in 3.5.

3.5 ETHICS

Ethical considerations in the participatory paradigm have been described as a tilt

toward revelation (Lincoln & Guba, 2011). As co-researchers and co-constructors of

knowledge, participants are required to reveal a certain level of personal insight. The

importance of ethics was heightened by this population’s close relationships with

children (i.e. they are mothers) and the intimate setting (their home), and the potential

vulnerabilities associated with participants and potential non-participants. For this

reason, ethical considerations were paramount and a thorough risk assessment was

conducted in adherence to the National Statement on Ethical Conduct in Human

Research (2007) and the QUT Human Research Ethics Committee (UNREC)

requirements. The UHREC Reference approval number for the study is 1700001119.

The study was gauged low-negligible risk as the research only represented a small

potential for risk. The risks included, physical discomfort, data privacy concerns, and

inconvenience. The likelihood of risk was minimal and strict safeguards were

implemented, throughout the research design, to further minimise and offset risk.

These risks and strategies are overviewed below and further detailed in Appendix F.

Participants were asked to reflect on their lives with ASD and as a result this

may have evoked some feelings of worthlessness, distress, guilt, anger or fear, or other

emotional responses incited by reflection of their parenting experiences Consideration

was therefore given to ensure all aspects of the research design offset or minimized

risks. For example, Visual Narrative Inquiry was selected as this research method

promotes a greater sense of trust and communication flow between the researcher and

the participants (Bach, 2000; 2007; Clandinin & Connelly, 2007). The recruitment

process clearly offered details of the research purpose, methods, and data safeguards

and the need to obtain written consent prior to commencing. The screening interview

was considered an important opportunity to not only establish rapport but to establish

participatory guidelines, expectations, and ethical and privacy concerns and

safeguards. Importantly, this interview covered issues of photography, children, and

ethics. Participants were made clear on the guidelines (and commitment to these

guidelines) pertaining to the production of images and protection of identity and


privacy of those who may feature in images, particularly children, including consent

requirements, data management strategies and pixilation techniques. Upon selection,

an information kit was sent to participants which included details of mental health and

health resources (Lifeline and Carers NSW Counselling Services, and reference to

contact their GP) should mothers require continued support. Within the research

design, regular check-in points were inserted to further promote participant support.

During several of the interviews participants became upset and this was managed with

sensitivity and a follow up email to remind the participants they had access to

professional counselling services. Contact details of the research team were also

provided. The research design was overseen by supervisors with vast experience in

Education, Autism, and arts-inspired research practices and their expertise continued

to inform data collection and analytic processes. The primary researcher was sensitive

to the lived experiences of mothers of children with ASD.

3.5.1 Informed consent

To ensure research integrity written consent forms were collected from

participants and stored and interviews recorded to enable transcription of data. Given

the inherent vulnerabilities of this research population and the sensitive nature of the

research the use of photographic images presented an element of risk, particularly in

regard to the children. While all mothers chose to photograph their children and

expressed levels of comfort with including these images in research, it was imperative

to ensure participants were clear on both the confidentiality and privacy risks as well

as the safeguards. Consent forms were returned prior to commencement and further

parental consent forms were obtained to protect children.

3.5.2 Management of data

To mitigate privacy and confidentiality concerns, strict data management

measures were in place, as per QUT Data Management Policies. Particular

consideration was given to the sensitive nature of this research and the potential

vulnerabilities associated with participants and potential non-participants. This risk

was considered negligible. All identifiable photographic subjects were pixelated to de-

identify human subjects and ensure privacy. A number of images contained children,

and siblings, and so further parental consent forms were obtained. One mother chose

to withdraw one week into the project and this was accepted, without comment or

penalty and her identifiable information already obtained was destroyed. No other

participants withdrew from the project.


The confidentiality of the study records was protected throughout the course of

this project using the following safeguards. All hard data were stored in a locked filing

cabinet at the researcher’s home; all electronic data were stored on a secure, password

protected server on QUT mainframe; all audio and transcriptions were coded to

conceal the identity of the individual; all photographic data were pixelated to de-

identify individuals; no names, images, dates of birth, address were collated and linked

to the data. Further, any publications arising from this research will use de-identified

data.

3.6 PARTCIPANTS

This study explored the lived experiences of mother of children with ASD and

this section outlines the processes used to recruit and select the five research

participants. As the participant pool was small, selection criteria were established, and

purposive sampling used.

3.6.1 Selection criteria

This study screened participants for suitability (purposive sampling). Given the

small sample size and the research design, it was important to recruit participants who

best satisfied the criteria and would complete the research project. The selection

criteria were tiered into essential and desirable. Mothers who satisfied both categories

were considered first. Mothers who met the essential criteria yet fell outside the

desirable criteria were then assessed for suitability.

Essential Selection Criteria:

Mothers who were willing and able to participate. Mothers who did not feel that

they could complete all aspects of the research were excluded.

Desirable Selection Criteria:

Mothers with children aged 6-12 years. Mothers with children who are outside

of this age range, but are willing to participate, would not be excluded and would

be considered.

Children must have received a diagnostic label more than 24 months ago.

Mothers with children who are outside of this diagnostic range, but are willing

to participate, would not be excluded and would be considered.


Mothers who live on the mid-north coast of NSW. Mothers who live outside of

this region, yet are still within an accessible location, and are willing to

participate, would be considered.

3.6.2 Recruitment

3.6.2.1. Recruitment processes

The recruitment process is summarised in Table 3.2. Following ethics approval,

certified emails and information flyers were disseminated through disability and

caregiver networks. Specifically, participants were recruited through Aspect and

Carers NSW, peak organisations who have contact with this maternal population, as

well as Mid-Coast Communities and Family Advocacy, locally based community

organisations who provide information services and advocacy to families and people

with a disability who live in the region. Each of these external agencies maintained

different ethics, contact and recruitment processes. This information and a copy of the

information flyer can be found in Appendix A. Following the six-week recruitment

drive, a total of 13 candidates had expressed interest and a process of purposive

sampling took place.

Table 3.2

Summary of Recruitment Process

Week Action Description 6 weeks prior to commencement

Recruitment flyers distributed. Information disseminated to peak ASD and caregiver bodies.

3 weeks prior to commencement

Selection interview: Purposive sampling

Applicants contacted via phone/email confirm participant suitability and willingness to participate. The interview took approx. 10 mins and was conducted at a convenient time.

2 weeks prior to commencement

Selection notification. Information packs distributed.

Via email. Consent forms returned.

1 week prior to commencement

Reminder email sent. Reminder email of study commencement sent. Reminder of consent forms sent. All consent forms were returned prior to commencement.

3.6.2.2. Purposive sampling

Given the small number of participants and the research design, it was important

to recruit participants who best satisfied the criteria and would complete the project

and thus purposive sampling was used to ensure contribute to effective research

outcomes (Lincoln & Guba, 2011). As Silverman (2013, p. 148) states, purposive

sampling requires critical thinking about the “parameters of the population we are

studying.”


With a total of 13 candidates having expressed interest, the participant pool was

assessed as to whether the applicants met the essential and desirable selection criteria.

Three participants met both criteria and were contacted via email/telephone to have

their suitability and willingness to participate re-confirmed (one of these participants

later withdrew). To satisfy the number requirements, participants who meet ‘essential’

yet not ‘desirable’ criteria were contacted and assessed for suitability. Of these, one

applicant did not feel she was able to complete the interview section and thus did not

fit the essential criterion. Several applicants did not respond to follow up emails sent

to re-establish interest in participation. The remainder of the participants indicated they

lived outside of the specified location yet were willing to complete the research via

online methods. These participants were sent participant information kits, written in

lay language and designed to ensure clarity over research purpose, requirements,

potential risks and benefits, points of referral, as well as consent forms to be returned

prior to commencement. (See Appendix A) At the end of the two-week selection

process six maternal participants had returned signed consent forms and were eligible

to participate. Of these five moved forward with the study.

3.6.3 Participant sample

Five mothers of children with autism spectrum disorder (n=5) participated in the

study. This number of participants supports the chosen methodology and the scope of

the thesis. Table 3.3. summarises demographic data of the participants, in alignment

with selection criteria and other family factors volunteered during the screening

interview. Despite the small sample size, the spread was varied in terms of family

relations, locality, and socio-economics. This table also assigns participants codes for

later discussion of findings.


Table 3.3

Summary of Participant Codes and Demographic Data of Maternal Participants

Maternal experience Participant code (P)

Number of children

Number of children diagnosed with ASD

Age of child diagnosed with ASD

DM5 diagnosis (if specified)

Locality Other family factors

P1 4 1 13 Level 3 ASD, non verbal, plus Downs Syndrome

Mid North Coast region, NSW

Sole parent, extended family/friends live interstate

P2 2 1 7 Level 3 ASD, non verbal

Mid North Coast region, NSW

Married

P3 3 2 11 & 7 Level 1 Sydney, NSW

Married, lives with in-laws

P4 2 2 3 & 5 Level 1 ASD

South West Region, NSW

Sole parent, Divorce imminent. currently lives with her parents, due to move into her own accommodation.

P5 2 1 8 Level 3 ASD

Hunter Region, NSW

French native. Married, husband miner, away at lengths for work

3.7 DATA COLLECTION TECHNIQUES

This study captured the nuances of the maternal lived experience to present new

perspectives on ASD and caregiving, with the potential to influence policy and

industry. This study also sought to understand the ways in which mothers use

photographic journaling as a reflective tool. The data collection techniques used in this

Visual Narrative study were selected to fulfil the research purpose, respond to the

research questions, and offer the needed sensitivity to this vulnerable participant

group. The first part of this chapter discusses the congruence of these instruments to

these requirements; this section focuses on how the instruments were used.

3.7.1 Photographic journaling

Participants in this study maintained a daily photographic journal, taking a

minimum of one photograph per day for 21 days. The mothers were asked to focus on

life with ASD and represent their thoughts, feelings, events, either symbolically or

literally. The photographs were to be taken on their own cameras/mobile devices. At

the end of each week the mothers emailed these through to the researcher. Some


mothers chose to narrate the image with a short reflection, and these data were also

collated and analysed. Use of image filters was also noted. The portability and

convenience of this data collection method (which aligned with the time and energy

constraints of this participant group) ensured fulfilment of research requirements and

data of quality and thus confirmed literature by Annear (2015). The images (and

captions) were then used as a springboard for an online semi-structured interview.

The benefits to both the participant and the researcher reflected those articulated

in prior literature (Bach, 2001; 2007; Clandinin & Connelly, 2007; Close, 2007;

Rampton et al., 2007). The reflective benefits to participants will be unpacked within

Chapter 4. For the researcher, this data collection method proved effective in allowing

insights into the lived experiences of the participants. Moreover, this method enhanced

relations with the participants, developing trust and opening channels of

communication (Bach, 2001; 2007; Clandinin & Connelly, 2007; Rampton et al.,

2007). The photographs acted as a springboard for discussion and broke down barriers

to enable revelation into some topics that more than likely would not have been

covered without the images. Also, the photographs enabled lines of inquiry to be more

directed into aspects the image spoke to, and thus this technique was sensitive to the

maternal experience.

3.7.2 Semi-structured interviews

Visual Narrative entails more than just attaching an image to a research project

and the quality of this inquiry method hinges on the narration of the images (Bach,

2007). The mothers participated in a 1-hour semi-structured interview, at the

conclusion of the photographic process, to discuss the images. The interview was

conducted online using Zoom software, at a time convenient to the mother. A semi-

structured interview was selected as it opened up the inquiry towards a more

conversational style thus allowing participants more freedom to talk without

constraints (Guest, MacQueen, Namey, 2011). Similarly, the researcher was able to

respond and guide inquiry towards more meaningful questions or for clarification.

This data collection method permitted a deep sharing of lived experiences (Guest, et

al., 2011) and, as mentioned, the photographs further supported this narrative exchange

(Bach, 2001; 2007; Clandinin, 2007; Rampton et al., 2007).

Lines of inquiry for each participant flowed around central questions which the

researcher had developed based on her photographic submissions, as well as potential,

preliminary themes which seemed to be emerging from across the maternal data sets.


An example of potential interview questions is listed in Appendix B. In addition to this

more flexible exchange, each mother was asked a number of standard questions

pertaining to her experience with the process. Reflecting the experience of Lemon

(2007, p. 177) the narrative process was found to reveal “a snapshot of inner conflict,

inner mental states or emotional states, in particular environments involving an

individuals or others and their subsequent relationship.”

3.7.3 Data checking and final reflections

Data checking was an important component of the research. At the end of the

project, once the interviews were transcribed, each participant was emailed a transcript

of the interview and asked to check and confirm for accuracy. Once confirmation was

received, analysis began. Only one mother asked for some minor changes (inaccuracy

due to audio glitch) these were made and resent for approval. Data checking is an

important consideration to maintaining research quality (Lincoln & Guba, 2000).

The data collection techniques used in this study proved rich and valuable and

provided insights which careful observations or other data collection techniques could

not – “a way of understanding by being open to the stories an individual tells and how

they themselves conduct the stories and thus themselves” (Lemon, 2007, p.178).

3.8 DATA ANALYSIS

This section addresses the important process of data analysis and interpretation.

This project adopted an inductive approach to data analysis as it used the research

questions to guide observations and find thematic patterns within the mother’s

experiences to then reach conclusions (Lincoln & Guba, 2011). This kept the maternal

voice as the focus of analysis. It was paramount that this research was not simply

considered a collection of attractive images or interesting narratives. Research rigor

was essential. Thematic analysis was selected as this analytic process offered the

robustness to ensure the findings were relevant, applicable, and potentialized to affect

the ASD and caregiving policy landscapes (Guest, et al., 2011). Further, thematic

analysis afforded the necessary capacity to capture the complexities of both the

photographic and narrative data which were analysed.

Thematic analysis is a systematic approach to analysing qualitative data that

involves identifying patterns of cultural meaning; coding and classifying according to

themes; and interpreting resulting thematic structures through similarities,

relationships, and overarching patterns (Mills, Durepos & Wiebe, 2010). In this study,


both photographic data and narrative data from the semi-structure interviews (and

photographic captions, if submitted) were analysed. Given the unique properties of

these data, thematic analysis extended the latitude required to extrapolate both the

semantic (surface) and latent (underlying) levels of meaning within both the visual and

narrative data (Braun & Clarke, 2006; Guest, et al., 2011; Margolis & Pauwels, 2011).

The research relied on a six-stage analytic method presented by Braun and Clarke

(2006), who consider this process an analytic method rather than a methodological

approach. This version of thematic analysis was “developed (primarily) for use within

a qualitative paradigm” (Clarke & Braun, 2017, p.297). Further, the framework has

previously been used in studies focussed on participants’ lived experiences (Braun &

Clark, 2006; Clarke & Braun, 2017), including Hodgetts et al., (2015) study exploring

the met and unmet service needs of 143 parents of children with autism. Table 3.4,

below, outlines Braun and Clarke’s Thematic Analysis framework and the subsequent

discussion unpacks how this process scaffolded analysis in this study.

Table 3.4 Braun & Clarke’s (2006) Six-Phase Thematic Analysis

Phase Title Description One Familiarization

with the data

Collation and multiple review of both photographic and narrative data so as to become intimately familiar with the data at both semiotic and linguistic levels. Identifies initial analytic observations and potential avenues for further exploration.

Two Data coding

A thorough and systematic review of both photographic and narrative data to organise into meaningful groups

Three Theme development

Examine the codes and data to identify potential set of themes and collating all data relevant to that theme.

Four Two levels of data review

Checking themes work in relation to coded extracts (level 1) and the entire data set (level 2). Generating a thematic map.

Five Theme definition

Ongoing analysis to refine specifics of each theme, and overall story analysis tell, and generating clear definitions and names for each theme.

Six Writing up

Final opportunity for analysis, relating of extracts back to research questions and literature.

The following discussion outlines how this six-phase thematic process was used to

analysis the data.

Phase one: Familiarization with the data

Familiarisation with data is the first phase of Braun and Clarke’s thematic

analysis framework. The scholars suggest it is “vital to immerse yourself in the data

to the extent that you are familiar with the depth and breadth of the content” (Braun &


Clark, 2006, p. 87). The data were repeatedly read and actively reviewed on multiple

occasions, and each interaction ushered in a new sense of understanding (Braun &

Clarke, 2006). Initial analytic observations and potential avenues for further

exploration were noted at this time, which helped shape, and enhance, the semi-

structured interview process (Braun & Carter, 2006). The data were reviewed as

follows:

- The research design required photographic data to be emailed to the researcher

weekly, over a three-week period. The photographic data were downloaded at

the end of each week and at that time, broad observations of the photographs

were made. Three of the mothers chose to caption their images and these

reflections were logged. These observations were used to refine questions for

the semi-structured interviews. At the end of the photographic data collection

period, each participant’s collection of images (and captions, if submitted)

were reviewed in their entirety. Viewing the ‘story’ of the data holistically

further invited familiarity and identification of relevant lines of inquiry for the

interviews. This process of familiarization provided the researcher with

insight into the participants’ lived experiences and thus helped establish a

platform of connection and opened lines of communication, which was

essential given the sensitive nature of the project.

- The creation of a participant photocard was instrumental to enhancing data

familiarisation. This photocard - displaying thumbnails of all 21 photographs,

named, and arranged in weekly order, on the one sheet – was emailed to

participants prior to the interview. Initially, the card was created as a reference

tool to enhance clarity between the participant/ researcher interview exchange,

deemed essential due to the intimate nature of the research. Also, this card

acted as a safeguard against technical glitches interrupting the online,

regionally based, interview (which did occur). However, the process of

creating this reference card invited another opportunity for data familiarisation.

Each image was examined, arranged within weekly order, then viewed as a

collection. This pictorial representation of each maternal lived experience

invoked glimpses of potential broad themes tracking through each participant’s

story and the group as a whole. However, at this stage, these insights were held

lightly as it was important for the mother to express herself in the interview

and allow the full narrative to unfold.


- During the interview process, handwritten notes flagged key elements of the

data and recorded broad observations. Post-interview, time was spent

reviewing these. Then, the audio recording of each interview was listened to

several times to prepare transcriptions. Once this transcription was checked and

approved by the participant the data continued to be combed as data coding

began, as per Phase 2.

The data familiarisation process continued throughout the entirety of the analytic

process, up until Phase 6, Writing up. Certainly, this was not a clear-cut process, yet

more reticular (Braun & Clarke, 2006). Each interaction with the data invited deeper

levels of familiarisation and more nuanced understanding of the mothers’ lived

experiences. Thus, although Braun and Clarke’s Framework provides systematic

response to the data, there was overlap between the phases.

Phase two: Data coding

Data coding is not simply a method of data reduction (Braun & Clarke, 2006).

Rather, thematic analysis identifies the “underlying systems of meaning” (Taylor &

Ussher, 2001, p. 297). Codes are considered small units of analysis, building blocks

for themes, and encapsulate interesting features in the data relevant to research

questions (Clarke & Braun, 2017). Data coding for this project involved a thorough

and systematic review of both the photographs and narrative data. Aligning with the

research questions, codes which captured features of the data were identified at both

visual and narrative semantic and latent levels. Essentially, this phase organized data

into meaningful groups (Tuckett, 2005). Each code was assigned a “pithy phrase” that

evoked the features of the data (Braun & Clarke, 2006, p. 88) and the codes worked

independently of the data. These codes evolved as the analytic process further unfolded

and by the end of this phase all codes and data relevant to each code were collated.

A life story is never linear, and the data sets reflected this recursive, layered,

convoluted nature. There was challenge in how to capture the multiple data sets and

meandering storylines to enable rigorous coding and analysis and to review all data

sets at both sematic/semiotic and latent levels. It was essential to develop a way of

systematically cataloguing and reviewing the data in order to scaffold inquiry and

ensure research rigour. To best organise the photographic and narrative data sets and

ensure systematic review, an Excel spreadsheet was created. This helped to maintain

methodical adherence to the analytic process and ensure accurate data coding to

facilitate interpretative analysis. Working left to right the name of the image was listed


and details recorded at semiotic and latent levels. (What was the image of? What was

the mother saying the image was of?) Broad codes for each image were subsequently

marked out in the relevant columns. In this way, the spreadsheet afforded a visual

representation of prominent codes for each participant, and across the group, and was

formative in thematic development. Figure 3.1. provides a visual representation of this

framework and Appendix C features a completed participant extract.

Image

Name

Image Semiotic Level Image

Semiotic

level,

latent

Image,

narrative,

semantic

level

Interview,

linguistic,

semantic

level

Interview,

latent level

Broad codes

What

is the

image

of?

Where

was

the

image

taken?

Filter

used?

What does

the image

mean?

Refers to

the written

narrative

submitted

with the

image

What is the

participant

saying at

word level?

What is the

underlying

meaning of

what the

participant

is saying?

Code

name

Code

name

Code

name

Figure 3.1. Snapshot of spreadsheet which enabled methodical review and coding of data, working column to column, left to right, image to image.

After recording data in this way, each interview transcript was then systematically

reviewed. A colour code was devised and used to highlight broad codes within the

narrative semantics. Some participants included a written caption with their images

and this same colour coded process was applied and the data logged. The colour

coding process identified prominent topics within the data and also offered another

visual representation of the interrelatedness of the codes through colour combinations.

Figure 3.2. shows the devised colour code and Appendix D provides example of this

code applied to a participant transcript extract.


Colour Code Reflective Practice Process Paperwork, NDIS & Advocacy, Service Provision Allied Health Child health issues & Behaviour issues Work Multitasking Sleep Maternal Health Relationships – Child to other people - Relationships – separate out? Relationships - Mother to other people (Friends , Family, Ex-Husband) Photographs of travel / taken in the car Movement, Travel, Change Siblings / household dynamics / family time Own space – self beyond mothering and caring Life beyond the surface Education Perception of ASD in community – understanding of ASD – separate out? Perception of ASD – maternal Acceptance Home Child sense of identity

Figure 3.2. Example of the colour code applied to the narrative data, interview transcripts and image captions.

Again, coding invited multiple reviews of the data to afford more intimate

understanding of the maternal lived experience with similarities and differences

between participant stories becoming evident. All of these insights were recorded –

along with colourful quotes, phrases that ‘stood out’ and/or were seemingly relevant

or encapsulating of the maternal lived experience story. These notations contributed

to thematic development and formulation of a response to the primary research

question – what are the lived experiences of mothers of children with ASD? Evidence

of this is in Appendix E.

Phase three: Theme development

This phase examined the codes and data to identify potential sets of themes. Of

particular interest in this phase was identifying similarities, overlap, patterns of

meaning/concepts, clusters of codes, and relationships between potential themes

(Braun & Clarke, 2006). By the end of this phase a set of candidate (potential) themes

emerged along with a ‘thematic map’ representing the relationships between themes

(and codes) (Braun & Clarke, 2006).

A theme is conceptualised by Clarke and Braun (2017, p.107) as a “central

organising concept” and the scholars purport the analogy of a theme being the central

character within a story, rather than “collection pots into in which we place everything

that was said about a particular domain” (Clarke & Braun, 2017, p107). In this way,

themes are considered to be an active creation, as opposed to merely paraphrasing


content emerging formed from the data (Braun & Clarke, 2006; Clarke & Braun,

2017). In approaching this stage, an element of ‘play’ was therefore adopted to allow

the data to speak, without narrowing the dataset into potential preconceptions and to

maintain openness to enable this creation. Analysis began with examination of

collective, broad codes and then moved to identify common threads between the

participants’ stories. In teasing out the prominent themes, analysis looked for overlap,

interrelatedness, clusters, and variances between stories; what were the data saying,

and not saying? What were the qualities of each code? (Braun & Clarke, 2006; Clarke

& Braun, 2017). With an intention to look at the data in different ways, time was spent

shuffling headings, creating mind maps and mud maps, and the colour coded

transcripts were pinned on the wall to look for patterns within the data. A lot of time

was spent reflecting on the data and notes were made in a reflexive journal. I began to

map out and develop potential themes to reflect the individual and collective maternal

stories. The preliminary themes were separated out under research questions one and

two. The theme development went through a number of evolutionary processes and

evidence from this process can be found in Appendix E. Pivotal to the development

of these themes was tracing the relationships between the codes and recognising the

entangled relationships between the codes. This thematic map is represented in Figure

3.3. Importantly, these themes told a rich and complex story about the data in relation

to the research questions (Braun & Clarke, 2006).

Figure 3.3. Tracing the entangled relationships between codes was the key to theme development.

Mud map showing thematic map.


Phase four: Two levels of data review

Braun and Clarke (2006) state the importance of phase 4 for the novice

researcher. This stage involved two levels of data review; first, the themes are

reviewed against the coded data to check if they tell a coherent story about the coded

data. If there is a good ‘fit’, the themes are then reviewed against the full data set.

To ensure research rigour, the candidate themes were then run against two level

of data. Firstly, the themes were reviewed against the coded data of each maternal

story and there appeared to be a ‘fit’. I did this by reviewing the candidate themes

against the data displayed in the Excel Spreadsheet and colour coded transcripts. I

considered whether these themes encapsulated the mother’s story. Was there anything

that needed to be adjusted? Next the themes were reviewed against the full data set,

the photograph and narrative data of all participants, and again this revealed a ‘fit’.

Photographic evidence of this process is seen in Figure 3.4. To ensure research rigour,

the potential themes were discussed with, and verified by, a member of the research

supervision team. (Trustworthiness is further discussed in Section 3.9). By the end of

phase four a set of candidate themes emerged, reflective of the lived experiences as

told by the mothers.

Figure 3.4. Photograph capturing part the Phase 4 review process; potential themes were reviewed

against each maternal story and across the full data set.

Phase five: Theme definition

Again, Braun and Clarke (2006) promote the importance, and utility, of this

phase for the novice researcher. This phase involved writing theme definitions to

encapsulate the complex narrative of each theme - the central concept, boundaries,

relationships to other themes, and association with the research questions. Braun and

Clarke (2006) suggest this process involves more than merely paraphrasing the


narrative extracts, and rather, requires consideration of what makes each theme

interesting to reveal its essence. A vivid participant quote was selected to reflect the

essence of the theme, and to reflect relationship with other themes, each lived

experience and the collective picture. This aligns with Braun and Clarke’s

recommendation that theme definitions need to tell the story of each and consider how

it fits into the broader overall story. The phase was iterative, with definitions moving

through a number of revisions and by the end of the phase the definition clearly

defining what they themes were and were not (Braun & Clarke, 2006). These thematic

definitions are provided in Chapter 4 and provide a framework for the discussion of

findings.

Phase six: Writing up

This was the last step in the analytical process. Braun and Clarke (2006) suggest

that there is no clear separation between analysing and writing. Indeed, this phase was

found to be more cyclic and less defined (Braun & Clarke, 2016) with the final stage

involving assembling, editing, writing, further analysis, and the organisation of themes

and selected data extracts. It is hoped that now, at the end of this project, this thesis

presents clear extracts with compelling evidence to support analytic claims. Chapter

4 will present and discuss the findings from this research.

3.9 TRUSTWORTHINESS

Trustworthiness establishes confidence in the ‘truth’ of research findings

(Lincoln & Guba, 1985; 2011) and is important to evaluating its worth. Qualitative

research requires rigorous and methodical methods to create useful results (Lincoln &

Guba, 1985; 2011; Lorelli, Nowell, Norris, White, Moules, 2017). For research to be

accepted as trustworthy researchers must demonstrate that “data analysis has been

conducted in a precise, consistent, and exhaustive manner through recording,

systematizing, and disclosing the methods of analysis with enough detail to enable the

reader to determine whether the process is credible” (Lorelli, et al., 2017, p.1). Lincoln

and Guba (1985) purport four criteria of trustworthiness: credibility (confidence in the

“truth” of the findings), transferability (demonstrating findings have applicability in

other contexts), dependability (evidencing findings are consistent and could be

repeated), and confirmability (the extent to which the findings represent participants

and not researcher bias or interest). Aligning with these criteria, this Visual Narrative

study ensured trustworthiness by:


Regular debriefing sessions: Regular meetings with the research supervision

team were held throughout the duration of the project to assist with the

development of ideas, widen perceptions, and offer alternative courses of action.

Similar strategies are suggested in Shenton (2004).

Scrutiny of the research project by research supervisory team: Regular meeting

with the research team also robustly discussed all aspects of the research,

including design, ethics, analysis and importantly, findings. Similarly, Shenton

(2004) states how fresh perspectives and provocative questioning help challenge

assumptions: “a researcher’s closeness to the project frequently inhibits his or

her ability to view it with real detachment” (p. 67). Thus, peer scrutiny ensured

a professional level of detachment was maintained. This aligns with Guba and

Lincoln’s definition of confirmability.

Importantly, data codes, patterns, and candidate themes were discussed with the

research team and their valuable feedback helped to further refine thematic

definitions and strengthen findings. Braun and Clarke (2006) assert that

systematic review contributes necessary to the research. of analytic methods.

Reflective commentary: Personal scrutiny and reflection also assisted in the

development of this project. A reflexive journal was kept through the duration

of the study and this proved particularly beneficial at data analysis stage.

Importantly, it was through reflexive journaling that I was able to see the patterns

and interrelationships between the coded data which were integral to the (re)

definition of thematic definitions and the studies overall findings. This process

afforded me now insights on the process yet also provided hard evidence of the

robust analytic approach taken to ensure findings were of value (Braun & Clarke,

2006; Shenton, 2004).

Background, qualifications and experience of the investigator: In qualitative

research, the credibility of the researcher is particularly important as they act as

the major point of data collection and analysis (Patton, 1990). I have a lived

experience as a mother of a child with ASD; have attended a number of

conferences within the caregiving field; and am a Carer Representative for

Carers NSW. Although this lived experience was considered a benefit to the

process, it also posed risk for bias. A number of strategies were therefore used

to ensure my persona agenda did not influence findings. For example, during the

interview process I had a sticky note on my desk which read ‘bracket own


experience’ – words of advice from my supervision team – a simple notation yet

effective in helping me stay within a professional researcher role. Sutton &

Austin (2015) claim researcher bias to be “unavoidable” (p. 227) and, rather than

ignoring or avoiding bias, suggest instead reflecting on its potential influence on

the project and clearly articulate one’s position/filtered perception to the reader.

My position as a mother has been well established within this thesis. I as the

researcher was supervised by a team with more than 30 years’ experience in

Education, autism and research.

Thick descriptions into the research phenomena were also used to achieve

trustworthiness and aligns with the criteria of transferability (Lincoln & Guba,

1983; Guest, et al., 2011; Shenton, 2004). In this study interview notes and the

interview audio recordings were kept, transcribed, and coded.

Examination of previous research finding to help determine the studies

congruence with existing literature both help promote trustworthiness. This

related to the criteria of credibility (Shenton, 2004; Silverman, 2013)

Important to the overall intent of this research was to produce findings of value ad

rigour to contribute to the ASD and caregiver literature and policy landscapes. Thus,

ensuring the project was ‘trustworthy’ was essential.


3.10 CHAPTER SUMMARY

This chapter has described the research design adopted to explore the lived

experiences of mothers of children with ASD and has considered the effectiveness of

photographic journaling for this group. A strong literature foundation presented

justification for the capacity of Visual Narrative Inquiry methods to effectively satisfy

the research purpose as well as respond to sensitives inherent in the nature of this

research and the participant group. The second part of the chapter presented particular

details of the project – research design; timelines; data collection methods; the analytic

process. The process of analysing photographic data and narrative data from the semi-

structure interviews (and photographic captions, if submitted) was described. It was

not enough to include attractive images or interesting narratives; research rigor was

essential to ensure the findings were trustworthy, relevant and potentialized to

potentially shape policy and service provisions for families caring for children with

ASD (Braun & Clarke; 2006, Clarke & Braun, 2017; Guest, et al., 2011). Braun &

Clarke’s (2006) Thematic Analysis framework afforded both the robustness and

latitude to cope with the semiotic and linguistic complexities of the data sets. Visual

Narrative Inquiry methods, and thematic analysis, proved congruent with the intent of

this research and provided findings of value. The findings are now presented in

Chapter 4.

77

Chapter 4: Findings & Discussion

Chapter 4 presents and discusses the central findings in response to the research questions


How does this group use photographic journaling as a reflective tool?

The maternal lived experience was found to be complex and uniquely varied influenced

by personalities, relationships, partnerships, health, diagnostic expression, locality, and support

systems. Whilst individual maternal stories are portrayed in Appendix (C), this chapter

maintains a thematic focus. The chapter begins with an overview of the central themes

emergent from across the data sets (photographs, captions, semi-structured interview

transcripts) to provide a context for the remainder of the chapter. The unique properties of the

visual narrative data provide new perspectives into the nuances of raising a child with ASD

and contribute understandings of the changing ASD and caregiving policy landscapes from

parents’ perspectives.

4.1 OVERVIEW OF THEMATIC FINDINGS

As discussed in Chapter 3, Braun and Clarke’s six-stage analytic process was used to

extrapolate the central themes from the mothers’ visual narrative data. This section outlines

those central themes. The data reveal the multilayered, multifaceted, interdependent nature of

the maternal lived experience as well as the influencing force of child health/behaviour in

shaping the maternal experience. For this reason, child health/behaviour is termed an

“influencer theme”, as it overarches all other themes, across both research questions. The

maternal lived experience, although intricate, can be teased into three broad areas – i) maternal

experiences within the family and home; ii) maternal experiences with external systems; and

iii) experience of maternal wellness (central themes 1-3). Each of these central themes is further

analysed into sub-themes. Several themes also emerge in relation to the ways in which mothers

engage with the reflective practice of photographic journaling. Tracing the interrelatedness

between the themes is the key to understanding the data and thus this section begins with a

visual representation of the findings (Figure 4.1). Table 4.1 then defines these central themes

to provide contextual reference for subsequent thematic discussion.

78

Figure 4.1. provides a visual representation of thematic findings, importantly, the

interrelationships between themes. Child health/behaviour influences the maternal lived

experiences within the family and home; external systems; wellness; and reflective process.

The defining qualities of these central themes are highlighted with sub-themes. Whilst the

nature of ASD significantly impacts on the lived experiences, within each of these themes, the

relationship is not exclusively downward or linear, rather it is reciprocal, though unequal. The

participants show agency against the challenges presented by ASD, and their efforts

subsequently impact the child. Further, there are lateral relationships between different aspects

of maternal experience, which is considered multifaceted. The thematic interdependence is

illustrated by double arrowheads.

Figure 4.1. Visual representation of thematic findings.

Definitions for each of these themes are articulated in Table 4.1 and provide a reference for

further discussion.

79

Table 4.1. Central Theme Definitions

Influencer Theme - Research Question 1 & 2 Theme Title Definition

Influencer theme

Maternal lived experiences of child health/behaviour

Child health/behaviour is an ‘influencer’ theme; underling and influencing all other themes and overarching both research questions. It cannot be separated out. Child health/behaviour relates to the complexity of caregiving needs and how these constant demands shape the maternal lived experience. The focus is on the ways in which mothers act to understand and support their child/ren to navigate the challenges inherent in raising a child with ASD.

Central Themes – What are the lived experiences of mothers of children with ASD? Central theme 1

Maternal lived experiences within family & home

This theme examines the maternal experiences within the family and home and considers how familial wellness is shaped by the nonnormative nature of ASD.

Sub-theme 1

Caring for other children (siblings)

This sub-theme focuses on the ways in which ASD ripples through familial relationships and impacts on the wellness of other children (referred to in ASD literature as siblings).

2 Marital relationships

This sub-theme explores how parental stressors associated with meeting the needs of a child with ASD can both challenge and deepen a marital relationship.

3 Family dynamics and functionality

This sub-theme shows the ways in which ASD can permeates family life to skew family dynamics and the ways families interrelate. Families ‘divide and conquer’; let go; and redefine future visions and current ways of being.

4 The home This sub-theme looks at the physical and social home environments and how modifications to accommodate ASD subsequently impact on the maternal experience of home.

Central theme 2

Maternal experiences with external systems

Central theme 2 examines the points at which the maternal lived experience intersects with the key external systems of education, health care, and community. Her experience is determined by discontinuity. Discussion avoids narrowing into a debate on good vs. bad practice yet, instead, focuses on the ways in which interactions with these systems characterise her lived experience.

Sub-theme 1

Education

This sub-theme focuses on the intersection between the education system and the maternal lived experience. The focus is not on evaluating teaching practices but rather, how the education system, positively or negatively, influences the lived experiences of mothers. Discussed are the enmeshed relationships between the education system, child wellness, and maternal wellness - as well as the relationship with familial (sibling) wellness.

2 Health care systems and services

This sub-theme discusses the intersection between service providers and the maternal lived experience. Perceived understanding of the child/mother/family determines discontinuity with service access, locality, and bureaucratic processes also influence the maternal experience and drive advocacy efforts.

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3 Community The health/behaviour of a child with often sits in juxtaposition to broader, societal norms. This sub-theme traces how mothers navigate the space between these societal expectations/perceptions of ASD and the best interest and needs of their child.

Central theme 3

Maternal wellness This central theme broadly relates to all aspects of maternal wellness – health; relationships; work; self-identity; and her attitudes towards life. “Juggling” has a defining and erosive impact on maternal wellness. However, mothers demonstrate agency and rely on variety of supports to re-orientate towards wellness.

Sub-theme 1

Physical mental and emotional health

This sub-theme explores the physical, mental, and emotional states of maternal health and the key stressors which debilitate health. Overridingly, mothers describe themselves as “exhausted” and direct relations are found with child health.

2 Maternal experiences of respite

This sub-theme explores the essential coping strategy of respite, in a variety of forms. Respite not only contribute to maternal health but contributes to overall wellness by providing an opportunity for reflection and connection with self.

3 Coping: Intrinsic coping strategies.

This sub-theme examines the intrinsic coping strategies mothers use to recalibrate towards wellness. Meaning making enables mothers to harness internal qualities of self-efficacy, resilience, and optimism. Intrinsic supports are more valued than external social supports.

4 Occupational engagement

Occupational engagement is a varied and complicated experience for mothers. This sub-theme explores the relationship between work and maternal wellness, including self-identity. Benefits and barriers to work are considered, as are the aspirations of mothers currently unable to engage in work beyond caregiving.

5 ASD as a gift or burden? Personal Insights of Mothers

The complexities and realities of caregiving force a re-definition of life’s priorities, hopes, visions, this sub-theme examines how the caregiving shapes maternal outlooks on life.

Themes– How do mothers of children with ASD use photographic journaling as a reflective practice? Process theme 1

Storytelling This theme explores how mothers use the photographic process as a platform for storytelling, intentionally framing their story for an external audience.

2

Meaning making

Mothers use the photographic journaling as a tool for internal reflection and use the process to make meaning of their experiences. Here photographic journaling brings mother in contact with the immediacy of their situation thus heightens awareness to enable reframing and transformation.

3 Keepsakes and happy snaps

This theme explores how mothers use the process to capture and reflect on situations, events, people, objects which make them happy and were memorable in a positive way. Photographs become a ‘hook’, helping mothers to relocate feelings of optimism.

4 Moments of stillness Mothers use photographic journaling to capture moments of respite, a deliberate pause in their day. These moments contribute to maternal wellness and enable an opportunity to reconnect with themselves.

5 Innovative communication and relations

This theme examines the way in which the photographic process became an innovative communication and relational tool between the mother and child.

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The remainder of the chapter will move into thematic discussion of the findings. Visual

narrative data (photographs, captions, semi-structured interview transcripts) illustrate how the

maternal experience is shaped within each of the central themes and discussion is formulated

with reference to the literature. With a tendency towards overlap, Section 4.2 will focus on

defining the elements constituting child health/behaviour before unpacking how this theme

influences the maternal experience within the family/home (4.3) external systems (4.4) and in

relation to wellness (4.5). The chapter concludes by examining results in relation to research

question two.

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4.2 MATERNAL LIVED EXPERIENCES OF CHILD HEALTH/BEHAVIOUR

Consistent with the literature, this study finds child health/behaviour to be the

significant predictor of dis-ease at individual carer, familial, and social levels

(Hodgetts, et al., 2014; Lutz, et al., 2012; Ritz, et al., 2011; Savage & Bailey, 2004)

and thus is termed an ‘influencer theme’. The theme encapsulates this notion of

enmeshment with the visual and narrative data sets overwhelmingly depicting multiple

aspects of child health/behaviour and how these extend onto the mother, the family,

and the external systems. Child health/behaviour is not concerned with detailing the

actual health and behaviours of the child and attaching potential negativity to these but

rather speaks to the complexity and constancy of caregiving demands. Merging the

terms health and behaviour reflects this broader approach to discussion and

demonstrates that this study does not distinguish between what is health related and

what is behaviour related.

The essence of this theme is encapsulated in the following quote by Participant

2: “It just doesn’t stop. The perpetuity of not sleeping. The perpetuity of toileting. It is

just exhausting.” This quote illuminates the complex and constant demands of caring

for a child with ASD and the exhaustive consequences of meeting these. All five

participants described multiple aspects of child health/behaviour; typical and

aggressive behaviours, anxiety, sensory, social and communicative issues,

incontinence, genetic conditions, and other physical care related issues. This is

consistent with the diagnostic criteria and literature pertaining to the complexity and

comorbidity of ASD (APA, 2013; Marshall & Long, 2010; Reynolds, et al. 2017;

Twoy et al., 2006; White, et al., 2009; WHO, 2017). The “constancy” of these

complex health/behaviour needs was also highlighted within the findings and

consistent with the diagnostic literature pertaining to the nature of ASD as well as the

literature linking the stress related impacts of cumulative health/behaviour needs

(Hodgetts, et al., 2013; 2015; Hoogsteen & Woodgate, 2013; Lutz, et al., 2012). The

stresses associated with child health/behaviour exist at both semiotic and narrative

levels to overwhelming confirm that child health/behaviour causes multiple stress

triggers, referred to in the literature as ‘stressor pile up’ (Bristol & Schopler, 1984).

The data also supports Marshall and Long’s (2010) assertions of stress clusters (as

opposed to singular stress triggers) which interact and accumulate over time and relate

to both non-event and recurrent taxing circumstances. Further, the research is

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consistent with Twoy et al.’s (2006) delineation between internal sources of stress

(within the family) and external sources of stress (external agencies and community).

These findings are reflected in the separating of the three primary themes and this

overarching child health/behaviour theme.

Although all mothers in this study communicated challenges related to child

health/behaviour, the essence of their stories is more an enduring drive to support the

child. This supportive response is evident even through the most challenging and

aggressive health/behaviour issues. Thus, this set of narratives focuses on how these

constant and complex health/behaviours shape the maternal lived experience, and

importantly, how the mother seeks to understand her child/ren to navigate these

demands and foster child/mother relations. Visual narrative data enliven discussion to

illustrate the maternal lived experience in response to aggressive (4.2.1) and complex,

constant child health/behaviours (4.2.2).

4.2.1 Maternal understanding - aggressive child health/behaviours

The literature and findings show the nature of ASD significantly contributes to

maternal vulnerabilities (Marshall & Long, 2010; Twoy, et al., 2006) with associated

atypical and aggressive behaviours considered the most significant predictor of

maternal distress (Bromley et al., 204; Gray, 2002; Kuhn & Carter, 2006; Lutz, et al.,

2012; Savage & Bailey, 2004). As such, it is important to examine how mothers in this

study experienced these. In adopting a wider lens, the findings showed that while

stressful, mothers responded in an understanding and supportive manner. This is

illustrated in image (Figure 4.2) submitted by Participant 2.

Figure 4.2. (P2). The mother used this image to represent her experience of, and response to, an upsetting incident involving her child.

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Participant 2 used this image to describe a “horrible morning” in which the child

began simultaneously trying to hug and head butt her at the same time. The mother

“needed to defend herself” against the physical attack, yet, through a carefully chosen

photograph and narrative explains her overriding intent was to support her child. The

mother relayed her attempts to settle the child by cuddling her and saying, “I don’t

know what you are trying to tell me right now, but I will never stop trying to understand

you and I love you.” To represent her morning, the mother searched the internet for

an image of a female boxer who did not look “mean and tough” yet looked “neutral”

to reflect her intent not to “come across as angry” with the child. When asked how

she copes with such challenging incidents, the mother explains she usually tries to

cuddle and reassure the child: “and I do that until it passes. And then she might get up

and walk away or something, so, as soon as she is not looking I cry. I cry because it is

so sad.” The mother affirmed she sees no point in getting angry, recognising the

child’s communication attempts and the “behaviour is a form of communication.”

She is trying to communicate. So, I let her know that I know she is trying to communicate, and I tell her, ‘I am sorry, I don’t understand. But, you will get there. You will get there. You will learn to talk in the future and I will know

what you are saying’ (P2).

The language within the narrative indicates the regularity of such behaviours,

which was also evident within her visual data. For example, a number of this

participant’s photographs illustrate the child’s tendency to remove her seatbelt and

climb through the car. One photograph (Figure 4.3.) is captioned: “Just after this photo

she undid her seatbelt and climbed over the front seat kicking me in the head while

doing so.” In another photo (Figure 4.4.), the mother had sat in the back of the car with

the child, “ready to pounce, should she undo her seatbelt, which she does every

time….” Within the narrative she shared how sitting in the backseat allowed her to see

and understand the child from a different perspective. Thus, this mother responds to

challenging child health/behaviours by extending understanding and enacting practical

and emotional supports.

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Figure 4.3. (L) (P2). “Just after this photo she undid her seatbelt and climbed over the front seat kicking me in the head while doing so.”

Figure 4.4. (R) (P2). The mother was “ready to pounce, should [Child] undo her seatbelt, which she does every time….”

Similarly, the visual narratives of Participant 1 provide insight into her

experiences with aggressive and intense behaviours, as illustrated in the following

photograph (Figure 4.5.) of a bedroom, with holes in the walls, bedsheets ripped away,

and contents of a cupboard emptied.

Figure 4.5. (P1). “That morning he had trashed his room. Absolutely trashed it… put holes in the wall… And I thought, I’ve got to take a photo of this, because, you know, it’s extreme. Extreme

parenting.”

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Whilst the mother’s narration indicates overwhelm, the inclusion of the term

“parenting” also shows support, and this was evidenced in later images showing the

room repaired and restored. She narratively and visually referenced that this was not

an isolated incident. Another photograph shows “a really bad moment” of the child

“after he had head butted the table about 5 times… and tried to tip [the] table over.”

The mother added: “but we are very used to that, so we grabbed the table.” Other

images tell how the child spent the majority of last year at home on suspension due to

“severe and significant incidents of violence and aggression.” The mother felt concern

for the impact that these behaviours have on her other children, aligning with research

of Hodgetts et al., (2013) who discuss the exhaustive impact of the aggressive

behaviour of the child on the spectrum on families. In response, the mother spoke of

her advocacy attempts and efforts in organising necessary support solutions. Further,

she spoke of the child’s ongoing physical care requirements and her actions to meet

the child’s communicative and sensory needs, for example, provision of certain foods

and sensory tools to help the child “self soothe.” Beyond incidences of aggressive and

atypical behaviours is evidence of multiple care requirements, thus evidencing

evidence of constant and complex health/behaviours.

4.2.2 Maternal response – complex and constant child health/behaviours

Integral to this influencer theme are the notions ‘complex’ and ‘constant’ and within

the data sets these emerged in the form of multiple care needs; the constant need for

vigilance; and constantly evolving care requirements. This section unpacks maternal

responses to these, beginning with cumulative care needs, as illustrated in the

following by Participant 2:

[Child’s] breakfast from 4.30am this morning, mixed with down feathers from an old quilt that the dogs (pet sitting) ripped, and [Child’s] spilt water bottle – because she refuses to put the lid on it. Looking forward to cleaning this up now that I’ve got home from having to do a shortened day at work (to pick

[Child] up because no one else available), fed dogs and cats, started generator, lit a fire and cleaned piles (and smears) of poo off [Child’s]bedroom floor – because she always does it when you’re busy with other things. But first, unpack bags and reboot for school tomorrow, hang washing, look out for any follow-up poo, do dinner. Give or take, a regular after school routine. (P2).

The above caption by Participant 2 articulates multiple child/health related issues and

evokes the breadth and speed at which the mother is operating. Sleep issues, sensory

issues impacting food intake, repetitive behaviours, incontinence, and issues

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pertaining to education are mixed in with the demands and routines of family life.

There is a sense of daily repetition and constant vigilance. These findings reflect those

of Hodgetts et al., (2013, p.169) in which families spoke of the “constant” or “never

ending” and that the “cumulative fatigue was unbearable.” Similarly, qualitative

research by Hoogsteen and Woodgate (2013) found parents felt exhausted and

overwhelmed by the daily tasks of raising a child with autism while Marshall and

Long, (2010) and Twoy, et al., (2006) link the unique nature of ASD to stress.

Participant 2 from this study states how her life is “typical of other families, yet ASD

adds an extra layer.” Although all mothers speak of the “exhausting” element of the

child behaviours the lived experiences of all maternal participants also evidence

willingness to meet these challenges by extending understanding and enacting

necessary supports. These supports ranged from practical supports – cleaning up,

organising logistics, attending appointments, modifying home environments and

routines to support the child – through to emotional supports. Such findings reflect

Hoogsteen and Woodgate’s findings (2013, p. 139) who stated that “overall, parents

in this study parented without question and did whatever they could, whenever they

could, with whatever they had.” Further, Montes and Halterman (2007) found that

although mothers of children with ASD reported higher levels of stress than the general

population, they were more likely to report a close parent-child relationship; better

able to cope with parenting tasks; and less likely to report being angry with their child

after adjustment for the child’s social and demographic background. Such findings

add a strength perspective to the maternal caregiving experience. In addition to

discussing the cumulative exhaustive experience of caregiving, mothers also

evidenced the need to be “constantly vigilant” and to “constantly adjust” care needs,

and such experiences can be linked with the inherent nature of ASD.

Constant vigilance is a prominent experience for Participant 5. Her visual

narrative display includes a photograph of her child who had lost her front teeth with

the caption, “she feels no pain.” In the interview, the mother described the child fell

from a chair, broke her two front teeth, and needed to be taken to the hospital. She

shared that the child “probably cried for 20 second and probably bled for 3 days.”

The mother went on to say that this was the second main incident where the child had

serious hurt herself, the child previously impaled herself on a piece of metal yet, “just

kept on playing.” As such, Participant 5 felt on constant alert:

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Some days… I grab her hand and make her stand next to me when I go to the

toilet to make sure she is not going to hurt herself or crash something… it is not exaggerating, it is a true picture of our days. (P5).

The mother speaks of the need to keep the house clean and clear of sharp objects

to protect the child from harming herself and how fences and locks had also been

installed to stop the child from running away. The mother shares how if the child is

left unsupervised she will draw on walls or rip up books and that some days she asks

the child’s older sibling to keep an eye on her, although tries “not to do that all the

time”. Again, these themes of constant vigilance and concern for safety are highlighted

in other qualitative studies (Hodgetts, et al., 2013; Lutz et al., 2012; Marshall & Long,

2010) as well as the parents in Hoogsteen and Woodstock’s (2013, p.137) study who

spoke of the exhaustion of always having to be “on”, referring to the need to be

constantly vigilant. Similarly, Participant 1 felt constantly on alert, “always waiting

for things to go bump in the night” and asserts this intense vigilance impacts both her

and her family’s wellbeing, reflecting research by Lutz et al. (2012).

The nature of ASD is constantly evolving and demands a lifespan perspective on

caregiving (Hodgetts, et al., 2015). ASD is a chronic and uneven and lifelong

developmental disorder which fluctuates stressors and caregiving roles over time and

often retains the need for parental involvement beyond the typical age (APA, 2013;

Hodgetts, et al., 2015; Reynolds, et al., 2017; WHO, 2017). Participant 1 provides

insight into how this relates to the maternal experience:

Things have evolved. It is not like, all of a sudden you are in this. It evolved. And the challenges sort of came in slowly as he is growing up. And it is only in the last 12 months that the workload has doubled… because of his age and puberty and all that sort of stuff. (P1).

The child is now “too big to manage” meaning she is no longer able to take him

out into the community which intensifies her experience and at times has led her to

feel like “prisoner in her own home.” Participant 1’s experiences reflect those of

others reported in literature (for example, White et al., 2009) describing how the

difficulties change as the child moves through adolescence. The mother’s language

allows insight into the impact this has on her experience, using words such as

“survival”, “cornered”, “horrible”, “in a bad mental state” and sharing how she

“switches off from the magnitude of her life” as well as concern for her other children.

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To address the issue, she organises respite and “now uses male support workers” to

take her child out into the community:

And that is awesome for [Child] and awesome for us too…. [Child] just loves the guys, because when he sees them he knows he is going out, and he loves going out … It is a beautiful time for him. It is a very positive time for him.

Figure 4.6. (P1). Child smiles as male support worker puts on shoes, ready to go out.

Within the interview, the mother also contemplated different support options to

continue to support both the child and family, saying – “so that is something I want to

work towards … I was thinking about it last night …. The other option is…. So, I’m

going to think about that.” Thus, the mother actively enacts and readjusts supports to

meet the continuously evolving health/behaviour needs of her child.

In a very different way, constant and complex child health/behaviours shape the

lived experience of Participant 3. This mother needed to be constantly vigilant of

dynamics between her three children (two of whom are diagnosed with autism) and

constantly aware of each child’s ever-changing individual needs. Dominating her

visual narrative is her efforts to harmonise relationships and engage the children in

activities together, both around the home and in the community (Figures 4.7 & 4.8).

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Figure 4.7. (P3). Shows two of her three children at a day out at the Aquarium.

Figure 4.8. (P3). Shows two of her three children engaged, at home, with Lego.

However, equally dominating discussion is the constant challenge and stress

associated with the children’s’ health/behaviour. The mother describes family life as

“stressful” stating, “I have always got my ear out for it all going wrong” and sharing,

“we have had to put them both on anxiety medication and we had to do that, without

that our house would be a warzone.” She speaks to the vast differences between her

children (despite the same diagnostic label) and their often-competing individual and

collective needs. The data illustrated her attempts to understand the nuances of each

child, enact individualised supports, support harmonious relations throughout the

household, and readjust as necessary. For example, Figure 4.9 showed the living room

destroyed with the caption “this is what happens when the 7yo sees someone else

eating meat in our house.” The mother shared how the strategies used to support her

eldest son are ineffective for this child and so she has needed to try to devise other

tailored supports. For example, images showed vegetarian dinner options (Figure 4.10)

and alternative dinner arrangements (4.11) and a photograph of her waiting (Figure

4.12) while her child attended a psychology appointment, “because he is needing the

support and the help and the strategies.”

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Figure 4.9. (P3). Her son has an enraged response to seeing family members eat meat. This incident led the mother to enact a range of supports.

Figure 4.10. (P3). “Now our son is ‘triggered’ by the sight of meat, we are exploring vegetarian options more often. Anything to make another day easier on everyone.”

Figure 4.11. (P3). “7-year-old is away at grandparents for the night, so we had a roast lamb without

fear of retribution. It was delicious.”

Figure 4.12. (P3). “Waiting in the waiting room for my son to be done with his therapy appointment.”

The narrative flowing from Figure 4.12. offers further insights into how this

mother constantly adjusted supports to accommodate the complex, changing needs of

each child. She commented how “from the age of 5 appointments were all very

regular, very frequent … then we had a bit of a break and now [Child] is needing a lot

of support it has come back to be a big thing again.” The mother stated that her

children “do appointments instead of extra-curricular activities.” Again, the nature of

ASD is seen as nebulous and mothers continually assess, enact, and readjust necessary

supports.

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This section illustrates how complex and constant child health/behaviours

shape the experiences of mothers caring for their child with ASD and extends the

research attesting the impact of child health/behaviour on mothers. It is difficult to

contain discussion of this influencer theme and already there is indication of how these

merge into other aspects of the mothers’ lives. In relation to the research question, the

maternal experience can be centralised into three main themes – family (section 4.3),

external systems (4.4), and wellness (4.5), with each of these further broken into

subthemes. The interrelatedness of these themes resonates with other qualitative

research by Lutz, et al., (2012) and Hodgetts et al., (2014) who also show the maternal

lived experience to be intricate and multifaceted.

4.3 MATERNAL LIVED EXPERIENCES WITHIN FAMILY AND HOME

This first central theme examines the ways in which the complexities associated

with raising a child with ASD affect the maternal lived experience within the sphere

of family and home, for this study’s participants. Family and home were revealed as

central tenants within the narratives of all mothers in this study. This confirmed the

centrality of the mother within the family system and her experiences provided insights

into the dynamics of the family and the health and wellbeing of family members

(Bayat, 2007; Lutz, et a., 2012; Marshall & Long, 2010). The findings from this study

further solidify research attesting to the health/behaviour of the child as a significant

predictor of familial dis-ease (Bayat, 2007; Bourke-Taylor et al, 2010; Bromely;

Hodgetts, Hodgson & Woodgate, 2013; Ferraioli & Harris, 2010; Marshall & Long,

2010; Seltzer & Osmond, 2007; Senel & Akkok, 1996). This central theme pulls into

focus siblings and marital relationships. The unique qualities of the visual narrative

data allow privileged access into the lives, homes, and families of maternal participants

to widen insights into familial stressors and provide a strength perspective.

To reflect the myriad of interconnected ways the family unit is impacted, the

term ‘familial wellness’ is used to describe the health of all family members;

relationship; functionality; and familial values. All of these factors impact not just on

the cognitive, emotional, and physical aspects of each member but also on the physical

and conceptual aspects of home. This theme examines these impacts and the ways in

which mothers adjust, willingly or otherwise, to accommodate the needs of the child.

Often these adjustments sit in contrast to societal norms. Sometimes these adjustments

are similar to other ‘normal’ families, yet, are more defined by conscious intent. At

times these adjustments apply to long term visions held for the child and family. In all

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cases, “making room for disability” initiates both levels of stress and acceptance.

These findings resonate with research showing families raising a child with a disability

function differently from other families (Bourke-Taylor et al., 2010). The care needs

of children with ASD permeate family life, demanding additional parental attention

and reducing focus on other family members (Bitsika, et al., 2013; Gray & Holden,

1992; Hastings & Brown, 2003; Jones, et al., 2014; Phelps, et al., 2009). Research

shows that the demands of caregiving often cause a restructuring of familial roles

(Senel & Annol, 1996; Seltzer et al., 2007) and lead family members to experience

health and opportunities for social and economic engagement differently from those

who are not in the position of caring for a child with a disability (Bourke-Taylor et al.,

2010; Brehaut et al., 2009; Ferraioli & Harris, 2010; Ketelaar et al., 2017; Phelps, et

al., 2009; Seltzer, et al., 2007). This central tenant of redefinition is encapsulated in

the following quote from Participant 2:

I have learnt to settle for less. Less in terms of quality and less in terms of quantity.... I have less standards for myself, my standards have dropped. We don’t have people over to the house anymore because I can’t keep up with the

cleaning. And when I did, it was driving me crazy. My mental health was suffering, trying to keep the house presentable and care for children and all that - and cook nice meals, nutritious meals. So, our standards are much lower. And I am ok with that until someone from the outside world comes into our space and then we feel a bit like … we feel a bit guilty. Not so much guilty, just we know that they are not going to understand why it is that way. That it is not laziness or inability to manage things, but to have children who are

happy, that have a good sense of self-esteem. We have concentrated on what we believe are the most important things and not what others think. (P2).

This quote also illuminates the intertwining between themes and sub-themes – between

child health/behaviour; maternal and familial health; partnerships; the re-prioritising

of values and family routines and centralisation of the needs of the child and family

unit over external perceptions; physical and conceptual aspects of home. Although

enmeshed, discussion will now tease apart these themes and sub-themes to examine

how child health/behaviour impacts the maternal lived experience in relation to caring

for her other children (4.2.1); marital relationships (4.2.2); family functioning (4.2.3);

the home (4.2.4.).

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4.3.1 Caring for other children (siblings)

Given the centrality of the mother in the family unit, she acts as a portal into

the health and wellbeing of other family members (Bayat, 2007; Lutz, 2012; Marshall

& Long, 2010). This sub-theme focuses on the mothers’ relationships with her other

children to show the ways in which ASD impacts on other children. Consistent with

the literature, the child/sibling relationship is varied (Ferraioli & Harris, 2010; McHale

et al., 2012; Orsmond, Kuo, Seltzer, 2009) and the siblings’ experiences impact on the

mother (Seltzer et al., 2007).

Familial relationships appear as a prominent code within both the semiotic and

narrative data sets of all participants, with ‘siblings’ heavily featured. The data tracked

significant relationships, for both the child and the mother. For all participants her

relationship with her children was the most photographed and narrated, the child on

the spectrum the most featured. This finding correlates to Montes and Halterman

(2007) study which found mothers of children on the spectrum shared a strong parent-

child bond which is built through the consuming demands of the child and the necessity

to deepen understanding to enact the necessary supports. Other studies assert that the

parents “intense focus on the needs of the child” (Hoogsteen & Woodgate, 2013,

p.137) is often is at the detriment of other tasks and relationships, including shifting

time and attention away from other family members (Seltzer & Orsmond, 2007).

Although this may not be a purposeful act, but rather a natural systemic occurrence

due to the presence of ASD, the result is still less time with other family members

(Phelps et al., 2010).

The next most featured relationship was that between the mother and her other

children with other children/siblings strongly represented across both the narrative and

semiotic data. The importance of the sibling relationship is also reinforced through

the photographic data showing siblings with the child with ASD. Across all participant

images, the child(ren) with ASD is photographed with their siblings more than any

other person. These images fall into three categories; photographs showing the

children interacting, or, more likely, engaging in parallel activities together; the sibling

caring for the child; or a portrait just of the sibling. Coupled with the photographic

representations is maternal concern for sibling wellbeing and narratives unfolded the

heartache associated with the sibling/child relationship and concern over the impact of

ASD on the siblings’ health and wellbeing.

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Literature points to health risks for siblings (Ferraioli & Harris, 2010; Seltzer

& Osmond, 2007; Phelps, et al., 2009) yet there are inconsistent findings into the ways

in which siblings are impacted (Ferraioli & Harris, 2010; Orsmond et al., 2009) and

there is a lack of research exploring the lived experiences of typically developing

siblings (Gorjy, Fielding, Falkmer, 2017; McHale et al. 2012). The literature does

suggest that siblings cope within the context of family relationships and the quality of

these relationships contribute to sibling well-being (Ferraioli & Harris, 2010; McHale

et al. 2012; Orsmond & Seltzer, 2009). Similar to typically developing relationships,

sibling relationships involving a child on the AS are highly variable and dependent

upon individual, family, and larger contextual factors (McHale et al., 2012). Family-

based interventions to help foster the sibling relationship may positively support

sibling wellness (Gorjy, et al., 2017; McHale et al. 2012; Orsmond & Seltzer, 2009).

The findings from this research attest to the variant experiences and contribute to the

research corpus by providing insights into the health of siblings, their relationships

with the child with ASD, and the ways in which families foster these relationships.

Examples of participants visual narratives are now presented:

Participant 5 included a photograph of her neuro-typical son and described him in the

caption as a “rock” for her daughter with ASD. Asked further about the image

Participant 5 says:

[Child] absolutely idolises him. But that doesn’t mean she is good for him.

The first thing she does every morning is bump on him and pull his hair. She is good at giving him cuddles too but she doesn’t really do the differentiation between giving a cuddle and being rough and hurting him. It is just attention that she gives him. (P5).

Similarly, Participant 2 included a photograph of her two children together in the bath,

annotated: “a rare moment happily engaged in the same activity.” When discussing

the photograph, the mother shared that although the children were together, it was

more a parallel play situation, “she was not making him get out so that was engagement

to me.” Asked further about the children’s relationship, Participant 2 responded:

Well they are in the same house together a lot, but no, not together. [Child]

pushes her brother away all the time. You know, if he tries to talk to her, play with her, she just pushes him away. He just walks away…. he’s a sensitive boy. He just says, ‘she won’t play with me!’ It is not a typical younger sister, older brother situation at all. I mean, she can’t talk, so they don’t have the usually verbal banter that some siblings have. (P2).

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Participant 2’s narrative allows deeper insight into the child/sibling dynamic:

Because we try not to upset [Child] too much, [Sibling] has definitely felt like,

I guess, that she kinda rules the roost a little bit. And we have, we talk to him about that. And compensate for it in other ways. The fact is she does rule the house. She does go and poo in his bed if he leaves the door unlocked. We had to get a lock for his door and so when he left his bedroom he could pull up the latch and she would not be able to get in there… Yeah, there is a lot of love. But there is not as much interaction between the two, and what little there is it is often her saying get out of my space with her hand in his face and pushing

him away…. It is a painful relationship. (P2).

Participant 1 also describes the relationship between her children as “painful”.

Throughout her visual narrative Participant 1continuously mentioned the significant

impact that raising a profoundly disabled child was having on her three daughters:

It is a painful relationship. The kids just get really annoyed with [Child]. Totally. And the impact that it has on them. … They are not close. See you can’t get up to [Child] and give him a cuddle because he will pull your hair! I’m basically the only person who can get near him. So, umm, they have had a lot of pain. There has been a lot of pain involved in dealing with him. And

for young girls, and poo, and they can’t have friends over. And so, it is very difficult…. it is not a positive relationship. (P1).

This quote by Participant 1 describes some of the complexities and

responsibilities inherent in some sibling relationships and also illustrates potential

social consequences for siblings. The mother is concerned about the impact of the

child’s pervasive care demands on her other children and recalled how health issues

flared last year when the child was suspended from school for a significant amount of

time confining the child and family to the home: “My whole family went backwards.”

The mother shared how one of her daughters is now suffering physical medical

conditions as well as depression in response to the stress. Such findings are consistent

with the literature which attests to the impact of child health/behaviour on sibling

wellness, including their ability to socialise (Ferraioli & Harris, 2010; Seltzer, et al.,

2007; Phelps, et al., 2009). Further, the findings relate to the risks of heightened

depressive and anxiety symptoms faced by adolescent sisters of siblings with ASD

(Orsmond & Seltzer, 2009).

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Given the stress at the familial level and concern for her other children, the

mother actively tried to organise respite to enable her children a break, for example,

Figure 4.13. shows the participant’s youngest daughter, outdoors, with fairy floss.

Figure 4.13. (P1). The mother tells of time spent on a day of respite: “We had a few hours off and I

took [Daughter] to a country fair, it was perfect for her age group.”

The mother also mentions that all of the daughters enjoy going to the beach and this is

something they do together in the warmer, summer months. Another photograph of

the child sitting at one end of the couch and his sisters at the other led into further

discussion regarding the sibling relationship: “I just try and focus on them and make

sure that their needs are being met. They really hang out for [Child] to go and have

time away.”

In addition to the emotional pressures of caregiving, siblings often assume

responsibility for the daily care tasks. For example, the mother shows another image

(Figure 4.14) of her eldest daughter preparing a bowl of food and the child sitting next

to her at the kitchen bench. Participant 1 narrated how she had been in pain from a

broken rib and so felt grateful for the help of her daughter:

I got up and she had got up and tidied the whole house. And she got [Child]

up, she had bathed him for me, and she had got him dressed, and put his nappy on, and all that. And I got up and she was giving him breakfast! And I was like, ‘thank you so much!’(P1).

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Figure 4.14. (P1). Participant’s eldest daughter cares for the child.

The mother was happy her daughter had “stepped up” to help her. Whilst she feels

ASD makes a positive contribution to her own life, “I know my kids don’t.” Yet she is

hopeful that “perhaps later they might. Because they are actually more mature kids.”

Similarly, the visual and narrative data of Participant 3 also evidenced a

positive influence of caregiving on siblings:

I don’t’ know how we got so lucky, but we have a little boy who is super understanding and caring. Like last night, when [Child] did not want to get in the bath, he got undressed again and got in the bath to make her calm. And that is pretty common. He does things like that several times a day, to the point

that I feel pretty bad. I try to remind myself that to a kid this is his kind of normal, he doesn’t know any other way. I guess he can see that it is different at other people’s house when he goes there because other kids don’t have to put up with what it like he does. (P3).

Research shows siblings of children with ASD demonstrate resilience and compassion

given their familial experiences (Orsmond & Seltzer, 2009) and while ASD impacts

on siblings, it does not mean the influence is a psychologically harmful one (Ferraioli

& Harris, 2010). In addition to providing insights into the siblings, this maternal

experience also provides insights into marital relationships.

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4.3.2 Marital relationships

This sub-theme examines the marital relationship, considered central within

the family system (Sim, Cordier, Vaz, Parsons, Falkmer, 2017) and an important

source of caregiver support (Weitlauf, Vehron, Taylor, Warren, 2014). The pressure

and energy required to meet the needs of a child with ASD places additional strain on

marriages/relationships (Higgins, et al., 2005; Hodgson, et al., 2009; Lutz, et al., 2012;

Marshall & Long, 2010; Phelps, et al., 2009; Saunders & Morgan, 1997; Senel &

Akkok, 1996; Twoy et al., 2006). Thus, this section provides understanding of the

ways in which couples navigated challenges and coped with ASD. Whilst the bulk of

the literature attests to marital distress, the findings of this study contribute to a

strength perspective.

In this study three of the five maternal participants are currently married in a

heterosexual relationship, one participant is due to finalise her divorce within the week,

and one participant indicates she was previously married. Data coding revealed no

participants included images of their husbands and transcription analysis showed no

married participants raised concerns regarding their husband’s health within their

narratives. However, husbands are identified, directly, or indirectly through plural

“we” references as a pillar of support within the narrative discussion. Although

relationship challenges are mentioned, the narrative data of all three participants

evidenced joint parental effort and shared family vision.

These findings sit somewhat in contrast to the bulk of literature pertaining to

ASD and relationships which focus on the stress, conflict, relationships dissatisfaction

and relationship breakdown (Hodgson, et al., 2009; Saunders & Morgan, 1997; Senel

& Akkok, 1996; Twoy et al., 2006). However, these findings fit congruently with

research by Sim, et al., (2017) where survey data from 127 parents of a child with ASD

showed dyadic coping strategies contribute to relationship satisfaction and help

couples positively adapt to the complexities inherent in raising a child with autism.

The majority of couples in Sim et al.’s (2017) study felt their marriage was both

stronger and closer and that they had become more dependent on one another. This

evidence also aligns with research that finds that couples can both maintain

relationship satisfaction (Bayat, 2007; Benson & Kersh, 2011; Harper, et al. 2013) and

strengthen their relationship (Markoulakis, et al., 2012; Myers, et al., 2009; Phelps, et

al., 2009). Further, this reflects the marital experiences of parents expressed in a

qualitative study by Marciano, et al., (2015) in that the challenges of raising a child

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with ASD brought meaning and focus into their relationships thus enhancing their

connection and solidifying their partnership. The parents in Marciano et al.’s (2015)

study collaborated closely to meet the child’s immediate care needs and expressed

willingness to navigate through marital challenges and stay together for the child’s

long-term interests. The parents in that study felt that without working together the

child would not reach their full potential and so found ways to overcome the potential

damage that autism presents to marital relationship. Literature within the field of

family resilience cites the central role of meaning making in helping families adapt

and cope with the demands of the disability and recommends practitioners support

families to form their own narrative about their experiences (Bayat, 2007; Bayat &

Schuntermann, 2013).

This literature reflects the maternal lived experiences in this visual narrative

study with evidence of parenting challenges leading to shared responsibilities;

enhanced communication and maternal support; and deepened feelings of connection.

For example, returning to the quote listed at the beginning of Section 4.3, Participant

2 was asked further about the process she used to redefine the familial priorities she

spoke of and whether conscious discussions were held within the household. Her

response provides insight into the supportive role of her partner and their shared

commitment to family:

We talked about it a lot because we needed to get through that period where I

was trying to maintain semblance and normality and regular mainstream activities and presentation. And it was driving me crazy. It caused a lot of conflict in my marriage. And part of the reason for deciding to lower our standards, to put is simply, is for our own wellbeing. But it didn’t happen overnight. Probably a couple of years. Trying to keep the plates spinning as they were before and just include this new thing, this disability in our lives. We have had to really change our visions for the future, our vision for … day

to day living (P2).

Participant 2 added that the challenges have led to a “deepening in relationship and in

self.” In a different way, Participant 5 also evidences how the couples navigate the

complexities associated with raising a child with ASD:

My husband had to go to work in Western Australia as a FIFO worker so [Child] could get all the costs covered …. and that had a massive impact on our family. But, as parents, we wanted the best for her and so that was the decision we made (P5).

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Although her husband no longer works fly-in-fly-out (FIFO) he still works long hours

within the mining industry with significant time away from the family. This leaves

the mother vastly responsible for attending to all the child’s daily care needs “which

makes it even harder.” Despite the burden and potential feelings of resentment, the

mother feels “grateful” to have a “supportive husband.” There is a sense of

commonality between the couple in regard to redefining, envisioning, and working

together to build a positive future for the child: “She will never have a PhD in

psychology but if she grows up to be independent a little bit and live her life to the

fullest of her ability, well then, we have done the best we can.” Further: “We are still

hopeful she will improve.”

Similarly, for Participant 4, major life decisions and a subsequent re-structuring

of life began following the diagnosis of their first child with ASD. At this time, she

and her husband decided to move in with his parents because “we needed support”

Throughout the narrative, the participant indicates collaborative decision making and

redefining shared family vision, as exemplified in the decision to home school her

eldest son; “we decided we were not going to force him any more” and “because it is

not something that we ever expected to be doing.” Collaboration is also evident within

daily parenting efforts; “we have learnt how to manage things with him.” The

participant also relies on her husband during difficult times and he supports her

physical and emotional health:

My partner is amazing, my husband. He has really stepped up over the past 12 months. He is really tuned into … how much extra stress I have been under, that I have been taking the brunt of it. And so, he is quite mindful and watches out, and checks in to see I am doing ok (P3).

In addition, the couple have previously engaged in an exercise and healthy

eating regime together and occasionally arrange care for their children to enable them

a night away together. While the mother recognises the importance of time together,

time is limited by the care demands and availability of childcare. These findings are

consistent with the parental experiences cited in Marciano, et al., (2015) in which

participants stated their lives revolving around the child with limited time to focus on

their marital relationship and the added challenge of being able to find adequate child

care support. The desire for quality time together to nurture their relationship, and the

recognition of the benefits of this, is demonstrative of relationship satisfaction (Harper,

et al. 2013). Such findings contribute an important strength perspective showing that

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parenting a child with ASD may not always equate to martial distress (Harper, et al.

2013; Sim, et al., 2017).

The partner is considered as one of the most important sources of caregiver

support and strengthening this relationship can promote familial resilience (Sim et al.,

2017) and bolster maternal wellness (Weitlauf, et al., 2014). These findings provide

further insight into the way relationships are woven with the pervasive challenges

presented by autism. This study also shows the significant other also provides support

at the practical, logistical level of family life with mothers evidencing the tendency to

split tasks and care requirements to cope.

4.3.3 Family dynamics and functionality

The centrality of the mother allows privileged perspectives into the dynamics

and functioning of the family unit and how ASD may permeate family inter-relations

(Bayat, 2007; Lutz, et a., 2012; Marshall & Long, 2010). A family does not merely

consist of individuals but is also defined by how time is spent together and the routines,

rituals and practices which weave daily life (Bria, 2011). Studies confirm that families

living with a child with ASD function differently from other families (Bourke-Taylor

et al., 2010) and the complexities associated with the disorder often cause a restructure

in the roles of family members and the ways in which they operate together (Brehaut

et al., 2009; Seltzer & Orsmond, 2007). Some studies link changes in family dynamics

to perceived social stigma attached to ASD (for example, Hodgetts, et al., 2013). This

sub-theme examines maternal experiences of family and how raising a child with ASD

alters familial inter-relations. Focus is on family time and redefinition of family

routines and future visions.

Family time was deemed important by all mothers, yet was fractured by the

complexities ASD presents. Photographic and narrative data showed families

engaging in a ‘divide and conquer’ approach to cope with the complexities associated

with ASD. Evidence of this strategy ranges from one parent staying at home with the

child while the other does the grocery shopping; one parent taking the child into the

community, while the other parent stayed with the sibling; one parent staying at home

with the child while the rest of the family embarks on interstate and international

holidays; arranging respite for child to enable her to care for other siblings. Although

this may be a strategy that ‘normal families’ take up, families of children on the

spectrum demonstrated a conscious level of intent behind their decision and reasoning

as to why this approach needed to be taken. Common to all experiences was the level

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of consciousness in planning to try and ensure health and functionality for all family

members, including, especially, the child. As a result of this approach, all mothers state

they infrequently, get family time together yet valued this time as “important” (P5).

Participant 3 values time together and consciously creates opportunities, both

in and out of the home, to foster familial relationships: “I think childhood should be

about play and family should be about loving relationships and trying to be there for

them and do things they enjoy.”. However, the challenges presented by three children,

two of whom are diagnosed with ASD, complicates time together:

They are coming from a dynamic of being very social and very different and we are very connected as a family and with friends and we just try to continue that whenever possible, wherever possible. Despite the added complication that autism has now presented into our family (P3).

The challenge to maintain social outings is communicated through a number of visual

narrative submissions, two images showed children at the aquarium with the caption:

A long-desired day out to the aquarium with 7 & 4-year-old. 12year old is at home with Daddy because he can’t tolerate trips to the aquarium. We have to plan all family outings carefully and usually have to split up to accommodate everyone. (P3).

The mother also narrates that she attended the Easter Show a number of times, taking

different children each time, along with extended family members to support her. This

enabled accommodation of individual child needs, however, the outings were still

deemed stressful. Participant 3 did evidence family time spent all together, Figure 4.15.

Figure 4.15. (P3). “Overall a successful and busy day taking all three kids up the coast to visit friends. Everyone held it together and we were able to enjoy ourselves. It comes at a cost though … 7year old

was so agitated that it took him to 10.10pm to finally settle off to sleep … and now for dinner.”

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In discussing this image, the mother commented how the ways in which her family

functions sit in juxtaposition to her traditional upbringing:

It is not something I ever expected my family to look like. I grew up … traditional family unit…. We would have our meals at the dinner table, we would talk, and it was all very structured, loving and supportive. We all went on holidays together, did activities together … and it was what I expected my family to look like. But, it has not happened that way at all! (P5).

The childhood experiences of Participant 3 also influenced the value she now

places on family time, despite the challenges ASD presents. As a French native and

an avid traveller and the family have travelled overseas together a number of times, as

illustrated in Figure 4.16 and the interview narration:

I have always loved discovering new places, it comes from my upbringing….

Travel has always been in my life and I wanted the kids to experience that. So, the kids have travelled a fair bit, despite [Child’s] difficulties. Like a couple of years ago we went for 6 weeks volunteering in Cambodia… It is something that is important it me… even if sometimes my husband can be a bit reluctant… (P5).

Figure 4.16. (P5). The mother is an avid traveller and the family are planning another trip together overseas. She shares that the child also loves to travel.

Figure 4.17. (P2). “Husband and son on a holiday at Uluru this week …” The mother stayed home to care for the child with ASD.

Participant 5 stated how the family “make a point” of engaging together as she

considers it “important”. The child loves water and the family spend time kayaking,

swimming, and at the beach. There was evidence of the family separating when the

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needs of the child sat in opposition to the needs of the rest of the family. This was

illustrated through an image of the sibling with the Australian Rugby Team, the

Wallabies. The sibling had been chosen to run onto the field and the parents had

booked a hotel for the night as part of the celebration. The mother was able to watch

the sibling only briefly as she needed to care for the child who was sensorially

overwhelmed by the crowded stadium. The mother spent the remainder of night

driving around, trying to settle the child to sleep.

Participant 2 demonstrated a more definite “divide and conquer” approach to

family life. Photograph, (Figure 4.17) showed of her neuro-typical child on holidays

with his father and was annotated: “Husband and son on a holiday at Uluru this week.

Pretty sure [child] would have been there too if it wasn’t for her disability. How did I

let that one sneak through the keeper?! She would have loved it.”

The sibling had been away on a number of interstate and overseas holidays with her

husband while she remained behind to look after the child. While both parents felt this

was in the child’s best interest, the mother also felt the child was somewhat

“excluded”. This mother also commented that everyday tasks, grocery shopping and

school logistics, for example were also at the effect of divide and conquer and that

their regional locality further ensured reliance on this strategy to cope.

For Participant 1, the intensity of the child’s needs sat in stark contrast to those

of his neuro-typical sisters and a more definite line was drawn through family

functioning. This mother was not in a relationship and, as mentioned, was reliant on

formal respite supports to enable her time to care for her other children: “I can take

my daughters to some things that they need to do.”

The family dynamics of Participant 4 were in flux, her divorce was imminent

and she currently living with her parents though was due to move into her own home.

The mother desired more quality time with her children and awaited the opportunity

to rebuild family life. An illustration of this is Figure 4.18 with narration:

I am trying to spend more time with the kids… Last year was a little bit difficult because I had just separated from my husband. But I am finding my independence again and building that back up. And also, we moved … and there was a lot of travelling and organising… and school transitions. So, last year I didn’t get to have as much quality time with them doing stuff, so now

that I am sorting everything out, and we have moved, I am trying to spend more quality time with them (P4).

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Figure 4.18. (P4). Image showing mother spending time with her children at a local attraction. She is wishing to spend more time together as a family.

In addition to child health/behaviour fracturing family time together, there is

evidence of it rippling the daily routines of family life. For example, for Participant 2,

the needs of the child and the levels of exhaustion associated with caregiving, has

shifted the family’s daily practices and priorities:

What does my son call it? ‘Are we having a frozen dinner tonight?’ When we arrive home from a manic day, past dinner time, and mummy and daddy are tired. The focus is very much on speech as we feel this will made the biggest impact on her life if she can talk really well. So, diet and other things, toileting even, comes second to that primary focus. Not that we disregard the other, it

is just that we don’t beat ourselves up if she is not eating her vegetables yet. We know she will get there (P2).

The redefinition of this mother’s familial values sat in opposition to “normal societal

standards” as well as her own traditional childhood upbringing. Participant 5 also

shares how the needs of her child has redefined household routines, priorities, and her

own values around cleanliness, yet this was not an easy process for her:

I used to be very pedantic about cleanliness and having everything organised, since I was a kid. When we had [sibling], our house was still spotless, I looked like the perfect mum. And I guess our house is not so perfect anymore (P5).

The mother states that this has “caused her stress” and so tries to tidy.

My husband is like ‘you never get enough time, why would you bother about

that? Just go for a walk’! And I say, “because if it is not tidy, it is not tidy in my head and I don’t feel good about that (P5).

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The mother clarifies that household presentation is not driven by the upholding of

societal norms but, “it is more for myself, and also to keep [Child] safe.” The maternal

experience shows disability impacts on the routines and values which weave family

life as well as the physical environment of the home and both these tangible and

intangible aspects of home were found to impact on the maternal experience.

4.3.4 The home environment

This study provides new insights into life with ASD within the family home

environment and this subtheme explores how ASD impacts maternal concepts of their

home, as well as the physical space. The code ‘home’ was prominent within the visual

narrative data of all participants; however, it is a subject which remains relatively

unexplored within the literature (Nagib &Williams, 2018). The literature does though

suggest treatment of ASD be embedded within home environment (Dawson, et al.,

2010; Ospina, et al., 2008; White et al., 2009) and there is growing literature linking

behaviours to the sensory environment (Carr, 2007). It is therefore valuable to better

understand the home environment of families of children with ASD. As a primary

setting the home holds “powerful physical, psychological, emotional, and spiritual

significance in our lives” (Nagib &Williams, 2018, p.46). The home is considered both

an “optimal, essential environment for healing” (Marshall, 2008, p.263) as well as a

place of struggle (Williams, 2002) and isolation (Hodgetts, et al., 2013). Similarly,

maternal participants in this study experienced home to be both an environment of

inescapable tension as well as a therapeutic space - and at times home represented

both. Discussion in this section begins with unpacking the varied maternal concepts

of home, before examining the physical home environment and how this is shaped by

ASD. Consideration is also given to the social aspects of home.

The varied, and variable, maternal experiences of home reflected the

heterogeneous nature of ASD. Home was featured significantly within the visual

narratives of all participants and was most prominent at the semiotic level, with 79 of

the 84 photographs taken in the home environment. For Participant 1, 20 of her 21

photos were taken within the home and this reflected the intensity of the child’s

health/behaviours. Figures 4.19-4.21 show some of her representations of home.

Participant 1 shared in the interview:

We spend a lot of time at home, as you can tell by the photographs. We spend

a lot of time in the lounge room because we can’t take [Child] out…. having

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[Child] home means I am 100% a prisoner, because I cannot get out during

the day (P1).

Similarly, parents in Hodgett et al.’s (2013) study also refer to themselves as

“prisoners” (p.139), reporting that the pervasive behaviours of the child with ASD

restrict their ability, or perceived ability, to engage with the community, either together

as a family unit or without the child due to a lack of appropriate care. Further, Hodgetts

et al., link these feelings of isolation to deteriorated parental wellbeing which is also

reflective of the experience of Participant 1 in this study who shared the stressors and

depression associated with restrictive living. Interestingly, the restricted home

environment had opened up the lived experiences of Participant 1 in a creative way

and sparked new ways of communicating, relating, and coping. As represented in

Figure (4.22), the mother had embarked on a “musical exploration” and has

“instruments all over the house” to help communicate with her nonverbal child, to

which “he responds positively. Always.” She added, “and that is something for me

which is really fascinating, being housebound, and music...” The mother went on to

study Art Therapy, which she “just loved” and put her “heart and soul into” thus for

this mother, the home was both a place of intense stress and challenge and inspiration.

Figure 4.19. (P1) (L). The mother took the image of a mop bucket to illustrate the significant impact incontinence, and continued clean up, has on her daily experience.

Figure 4.20. (P1) (R). Image of child taken after he had headbutted the table several times before pushing it over. The mother took the image to illustrate the intensity of care demands.

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Figure 4.21. (P1) (L). Child in backyard. Mother set up buckets of foil paper, around the house and in the yard, for the child as chewing the foil helps him self-soothe.

Figure 4.22. (P1) (R). Mother’s recorder and keyboard. ASD has restricted engagement beyond the home yet has also opened up new, musical, avenues.

In addition to mothers’ conceptual notions of home, mothers showed the physical

home environment was modified by ASD. Home modification refers to the way an

environment is altered to accommodate special needs, including installation of

equipment or other aspects caregivers consider important (Nagib & Williams, 2018).

In this study Participant 2 included a photo presented in Figure 4.23 and caption to

reference her decision to tile the child’s bedroom to assist with management of

ongoing incontinence issues.

Figure 4.23. (P2). “Hallelujah! We have finished tiling [Child’s] bedroom! So much easier to clean up the poo and other messes.”

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For Participant 5 fences, gates, and locks were installed to divert/protect the child from

risk and she spoke to the costs associated with these modifications. She also described

the home as a therapeutic space for the child and included images of exercise

equipment (Figure 4.24) and a swimming pool (Figure 4.25) which was used to help

calm the child - and relieved stress for the entire family.

Figure 4.24. (P5). “Keeping [Child] busy!”

Figure 4.25. “ASD Princess in her element!”

Home modifications also includes micro-modifications to create “space”, and

Nagib and Williams (2017; 2018) suggest this may involve families needing to relocate

to a different home which is more accommodating of caregiving needs. In this study

Participant 5 emphasised the importance of “space” for the harmonious functioning of

the family and benefit to all family members. She also revealed the family’s intentions

to relocate to a “hobby farm”, to help both the child and the family unit:

[Child] has a close bond with animals … and she is always very calm with animals. My husband is a keen gardener and we have quite outgrown our house. I think it will also help [Child]. And also [Sibling] who is very caring and understanding but this will mean that he will also be able to have some me time … because at the moment that is not happening (P5).

This discussion gave insight into the impact ASD had on the family unit, all family

members felt the pressure of caregiving and this further endorses the need for support

strategies to consider familial contexts, including the home space. Similarly, Nagib

and William’s (2017; 2018) believe the home to be an essential therapeutic

consideration for individuals with ASD with modifications accommodating the needs

of all the family, not just the individual with autism.

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Participant 4 also evidenced her lived experiences in relation to home. The

mother was due to move yet at the time of the interview shared a home with her

parents. She reported the lack of physical space and privacy impacted her sense of

independence and perceived parental efficacy: “And so basically I am confined to the

bedroom, which the kids like to trash! And [Child] sleeps in here so you have to be

quiet of a night. So, it will be great to have my own space.” Home was important to

her sense of self and symbolic of the rebuilding of life after a marriage breakdown

(Figure 4.26):

I am excited because it is a 4-bedroom home, so they (her kids) will have their own home and I will have my own space…. The last year has been about finding me again and I think that having my own house will finish that off. My own house, own space, own identity (P4).

Figure 4.26. (P4). Excitement over new home.

Thus, the maternal lived experience of home is influenced by child health/behaviours

and the physical space. In addition, the lived experience was also seen to be influenced

by the social aspects of the home, which shifted to accommodate ASD. For example,

Participant 1 was heavily reliant on paid support workers to come into her home to

assist her. The formalisation of care placed the mother in a vulnerable ‘client’ position,

shifting the home from a private to a public space with potential consequences on

caregivers (Carers NSW, 2018). In a different way, Participant 2 referred to “the

outside world” and shared that family and friends were no longer invited due to the

demands of ASD and fears of misunderstanding. The literature also reflects how the

nature of ASD, and perceived social stigmas attached to ASD, can lead families to

restrict contact with wider family, friends, and community resulting in isolation (Gray,

2002; Higgins, et al., 2005; Hoogsteen & Woodgate, 2013; Marshall & Long, 2010).

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This section explored the first of three central themes - the maternal lived

experiences within the family and home. The unique properties of the visual narrative

data provided privileged access inside the lives of families to afford findings of value.

Child health/behaviour influenced familial wellness – the health of family members,

sibling and marital relationships, and the ways in which families came together to eat,

live, and grow. Thematic discussion highlighted that ASD shaped maternal

conceptions of home and the physical home environment. This central theme asserts

the child cannot be dislocated from the family system and viewed in isolation. Thus,

policy and support services must consider the needs of the family when supporting the

needs of the child. The findings from this study contribute to a broader picture by

providing a level of detail to assist industry professionals and policy makers to better

understand family functioning and create more reflective supports. Beyond the familial

context, child health/behaviour also influences the maternal experiences within

external education, health, and community systems and this second central theme is

discussed in Section 4.4.

4.4 MATERNAL EXPERIENCES WITH EXTERNAL SYSTEMS

The second central theme in relation to the research question relates to maternal

experiences with the external systems of education, health care (including the National

Disability Insurance Scheme, NDIS), and the community. The findings add to existing

literature which demonstrates an incongruence between external systems and the needs

of the family impacts on the maternal experience, particularly on their health (Bourke-

Taylor, et al.; 2010; 2011; Gray & Holden, 1992; Hodgetts, et al., 2014; 2015;

Hodgetts, McConnell, Zwaigenbaum & Nicolas, 2017; Sanders & Morgan, 1997;

Twoy, et al., 2006; Whitehead et al.,2015 and occupational engagement (Bourke-

Taylor, et al.,; 2010; 2011; Hodgetts, et al., 2015; 207; Levy 2011; Ritz et al., 2010).

In 2010, Bourke-Taylor et al. conducted a mixed-methods study with eight

Australian, maternal caregivers. They found that children with a disability are highly

dependent on capable caregivers for health care and successful community integration

and the purpose of this study was therefore to better understand maternal caregivers to

help create more effective supports. In addition to emotional distress related to

caregiving, mothers described the stress related to ‘discontinuity’ or ‘incongruence’

with external systems and cited prominent issues relating service access (such as

inadequacy and availability); quality of service; cohesion of services; the need to

advocate for the child and fight for understanding and the child’s rights. A later study

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by Hodgetts, et al., (2017) which surveyed 119 mothers of children with ASD reported

similar findings, highlighting more the impact of the systems behind the frontline

services. Mothers in this study reported “frustration, stress, and exhaustion from

ongoing attempts to navigate systems that offer little continuity, coordination or

transparency” (p.43). The paper recommends increasing understanding of the

influence of systems on mothers as crucial to improving services and systems because

of the well-established symbiotic relationship between mother and child wellness/

development (Hodgetts, et al., 2017).

The visual narrative data in this study revealed stresses related to congruency

extended beyond the mother to impact at familial level, thus supporting the literature

citing the urgency of congruent family-centred support systems (Bourke-Taylor, et al.,

2010; 2011; Hodgetts, et al., 2014; 2015; 2017; Levy, 2011). Thematic discussion

avoids narrowing into a debate on good versus bad practices as this limited perspective

fails to capture the complex interplay of factors inherent to the lived experience.

Instead, the focus remains on what the maternal experience is when interacting with

these systems. “Intersections” encapsulates the essence of the theme. The external

systems that impacted on the mothers’ lived experiences in this section are Education

(4.4.1); NDIS and health care (4.4.2); and the community (4.4.3).

4.4.1 Education

The Education system was found to have a defining influence on the lived

experiences of mothers of children with ASD. This sub-theme is focussed on the

maternal experience - not on harbouring judgement on educational practice. Perceived

support and understanding determine maternal experience with the education system

(Banach, et al., 2010; Gray & Holden, 1992; Hodgetts, et al., 2014; Marshall & Long,

2010; Sanders & Morgan, 1997; Twoy, et al., 2006). Two of five participants express

that they were relatively “happy” with their children’s schooling and felt the child’s

needs were accommodated and family was supported. One mother indicated she was

happy with her eldest child’s school yet expressed concerns about the level of care her

youngest child was receiving in his childcare facility. The remaining two participants

were extremely unhappy with their children’s schooling experiences and their

experiences of disconnect with the education system caused significant distress.

Education contributes significantly to positive outcomes in the lives of individuals

with ASD and those supporting them and is considered a major factor in affecting

social outcomes in adulthood, determining later employment and social and economic

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independence (Levy, 2011). This necessitates an understand of the causes of

disconnection to enable the effective support systems.

Thematic analysis reviewed data and found interrelationships between

‘education’ and codes ‘child health’, ‘maternal health’, ‘familial health’, ‘advocacy’

and ‘work’. These findings affirmed existing literature showing bi-directional

relationships between the education system and child (Levy, 2011); and the mother

(Banach et al., 2010) and important is the evidence of the influence of the education

system on familial, sibling, wellness (Hodgetts, et al., 2014; 2015). Disconnect

resulted in both immediate and long-term consequences to health and impacted

capacity to work which disrupted financial security. Educational opportunities for the

child were also interrupted (Levy, 2011).

For Participant 1, disconnection with her son’s school ricocheted through her

life. The child spent ¾ of 2017 at home on suspension due to “quite severe, significant,

incidences of violence and aggression.” The mother stated that the transition into year

7 was “dreadful” with the child regularly suspended and “kicked off of his transport.”

The mother described herself as “a warrior” and “advocated for [Child], and for his

disability, which is quite severe.” She asked for more support from the school and the

Department of Education and Training (DET) but, “they had every reason under the

sun why they could not support my son.” The relationship with the school deteriorated;

the Principal refused to meet with her, she felt unable to collaborate with the Deputy,

and the school counsellor also would not give her a hearing:

So, I was going backwards. My whole family went backwards. Because of this we all went into a depression. Because having [Child] at home means I am 100% a prisoner. Because I cannot get out during the day… And it was a horrible year, horrible year (P1).

In addition to her own deterioration in health her eldest daughter was diagnosed with

physical and mental health conditions which the mother felt was due to the strain of

this situation. The mother wrote to the DET and Minister for Education, NSW, and

asked for the case to be reviewed:

And after that things changed. After about 4 days he magically got put back

on his bus. They found a bus driver. And they also found a male support worker for the school. A new deputy came on board … and he is pretty awesome, he really wants to see the culture change at the school. It is not just my son suffering there. There are quite a few children who are high risk and

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high needs and families are really, really suffering because of the school and

the suspension policies (P1).

The incident caused not just mental, emotional, and physical strain but the impact of

this educational experience also overshadowed the mother’s capacity to work. She

stated her ability to work was limited by “the DET” and insecurity around the child’s

attendance:

I am cornered! I am almost handcuffed. Last year, [Child] spent ¾ of the year at home. He has only just resumed full time this term. All year he has been on partial attendance, and it is not even a permanent thing. And so, they have not put him on his transport permanently. We are just seeing how it goes. So, with that over my head it is extremely hard for me to even consider going out and

having any kind of professionalism … apart from exhaustion (P1).

Post interview, within her final reflection, the mother advised the child has once

again been suspended.

The lived experiences of Participant 3 have also been significantly impacted by

the education system and resulted in a decision to home-school her eldest child. For a

number of years her son (diagnosed ASD, dyslexia, dysgraphia) increasingly

“struggled” to maintain school work and became more “stressed” and “anxious” as

time went on. Although she felt the teachers were “loving and kind” the child was not

supported as far as his disabilities went. School refusal set in and the child needed “be

coaxed” and “forced” to attend. The mother’s work, health, and familial balance

suffered, and she felt that if she kept pushing the child she “was going to break the

relationship.” She explored other education alternatives, enrolling the child in an

autism specific setting, yet stress continued to escalate, thus the decision to home-

school. However, this educational option has continued to impact on her health and

capacity to work. She has needed to reduce work hours to accommodate the child and

to support her own mental health, which she shared had failed due to the significant

stress. In turn, this has resulted in financial loss and job instability. Whilst she feels it

has been beneficial for the child and the family – “I am very happy with the decision

we have made, it has been good for the family” – she also expressed “anger with the

fact it has come to this.”

I am angry with the system. It seems that the kids that fit my son’s particular profile are not well supported by the school and they don’t fit those units which are specialised. He is a really bright kid, he has a lot of academic potential, but he has also got autistic stuff going on and he has learning

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difficulties, dyslexia…. I know we are not an unusual case. It happens all of

the time. And our kids are just being spat out and families left to figure it out for themselves and it is to the point it is not ok. (P3).

Participant 4 has two children with ASD and reported mixed experiences with

the education system. For example, when her eldest child commenced primary

schooling she attended just 2hours a day for several weeks and while the mother

reported this transition arrangement has been positive for the child, she stated her own

capacity to work had been reduced. The mother expressed more concern for her

younger child and felt that the childcare facility lacked understanding of ASD and the

needs of her son and family. She told how the centre Director had moved the child

into another room, without consultation or the support of the room leader, who felt the

child was not ready for the transition. The family were also due to move to a new house

and the mother felt that too many changes would not be of benefit to the child. The

mother relayed a conversation with the Director:

And I said, ‘Well, there are other things you need to think about too. The fact

that I am moving, that my ex-husband has just moved, all these home factors you need to consider. And the fact he [the child] is having surgery soon and will have two-three weeks off pre-school. You need to think about other stuff, he is not just a number and you need to move him because you need to put more babies in that room. You need to think about the fact he has autism, the he needs a gradual process, you need to teach him that there are different teachers … he needs to know those teachers and you need to do stuff before

you just throw him in the other room! (P4).

The findings from this study show disconnect hinged on understanding. Families

felt that the education system failed to understand the nature of ASD, the needs of the

child and the familial context. A study by Hodgetts et al. 2017 recommends schools

act to understand the complexities faced by both parents and the students with ASD in

order to create strong partnerships. Further, the scholars recommend “the need for

further clinical and educational reflection and research to forward our understanding

on family functioning in families with a youngster with ASD” (p.43). Thus, this study

contributes valued familial perspectives towards achieving more positive partnerships

between the education system and families of children with ASD. This central theme

has explored maternal experience with the education system. Section 4.4.2. examines

experiences with healthcare system to reveal similar feelings of misunderstanding.

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4.4.2 Healthcare systems and services

This sub-theme discusses the intersection between the maternal lived experience

the healthcare system. Given the breadth of recent changes to Australian disability

policy and funding with the transition onto the National Disability Insurance Scheme

(NDIS), this theme was significant within the data sets. As the NDIS is a contentious

topic within the current socio-political environment and draws a highly publicised, and

varied, range of responses from all stakeholders (Carers NSW, 2018), this study does

not explore such debate, but rather, presents data to frame a measured discussion. In

this way, findings presented here hold relevant insights into the ways in which the

NDIS and more general health care system, impact on the maternal lived experiences

to contribute towards greater continuity of care.

Family-centred approaches to supporting children with ASD are widely

considered best practice (for example, Bourke-Taylor, 2010; Hodgetts et al. 2017). Yet

the literature also attests to the discontinuity that exists between health care providers,

systems and families and highlights the need for greater understanding of the child, the

nature of ASD, and the familial context to bridge this divide and enact effective

treatment (Banach, et al., 2010; Bourke-Taylor et al.,; 2010; 2011; Gray & Holden,

1992; Hodgetts, et al., 2014; 2015; 2017; Levy 2011; Marshall & Long, 2010; Sanders

& Morgan, 1997; Twoy, et al., 2006). Mothers in this study reported discontinuity to

be inherent in the bureaucratic processes of the NDIS and issues related to service

access and availability also determined their experience.

Experiences with NDIS featured significantly in the visual narrative data of four

of the five participants, yet these experiences were varied. To provide contextual

overview - of the five participants, one mother is self-managing the NDIS plan; two

mothers plan manage; and two mothers are yet to access NDIS. The mother living in

Sydney did not mention NDIS within her visual narrative or photographic data,

however, confirmed post interview that one child is registered, and she is yet to have

a plan approved for her second child. The discussion will now unpack the four varied

maternal experiences pertaining to NDIS/health care services.

The experiences of Participant 4 are driven by her regional location and

photographic and narrative captured significant issues pertaining to service access and

availability (Figure 4.27). The mother lives in a small, regional town and despite being

NDIS approved, and receiving funding to support the therapy needs of her two young

children, in reality there are limited to no services to actually provide this therapy.

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“We have money but no one to help …which is really frustrating … finding an OT has

been really, really difficult… and quite stressful… I am just trying to get them the help

and support they need …” (P4).

Figure 4.27. (P4). NDIS paperwork. This participant has found it challenging and stressful to secure services for her children. Her frustrations have led her to advocate Members of Parliament.

The one Occupational Therapist who was servicing the town Participant 4 felt lacked

the understanding necessary to adequately support her family and arranging for

another provider to travel into the area sapped the majority of her funding budget in

travel costs. Further, the option to drive her children to the nearest town for therapy

would cause interruptions to their schooling transition progress and skew occupational

balance. The lack of services, and the mother’s desire to get her children the support

they need, drove advocacy attempts to contact Federal and State Representatives:

I want them to address the lack of services in regional areas and the fact there is no one in our area. We don’t have enough money to access them, because we have to pay to bring a therapist over from… 40minutes away… which is $178.79, just to bring them over!.… I mean, I could pull her out of school, but I have spent so long getting her into school…. and I could not work. (P4).

The mother’s frustration is compounded by Government’s lack of response and,

despite consistent effort, she is yet to be afforded an audience and an opportunity to

explain her situation. In addition to access related issues, the mother evidences NDIS

paperwork and bureaucratic processes as “stressful” and time-consuming. More, the

change to Participant 4’s respite funding meant her needs as a carer are now ignored:

The NDIS isn’t so much focussed on carers. There used to be respite... but now it is all about the participant, not about giving the carers a break… It is all about meeting the child’s needs, but what about the rest of the family? (P4).

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Lack of familial consideration and service accessibility was also the experience of

Participant 1. While this mother felt the child’s life had improved under NDIS, the

lack of access to overnight respite significantly impacted her experience. The child

requires high level, complex care and the intensity of stress related to this care blankets

the entire family and is illustrated within photographic and narrative data. The NDIS

has enabled support workers to assist the family and this arc of support has lifted

maternal and familial health and also been a positive for the child: “The NDIS is really

solving a lot of issues for [Child]… and it is awesome for us too.” One photograph

showed the child, laughing, with a support worker: “[Child] just loves the guys … It

is a very positive time.” A second photo (Figure.4.28) of another support worker is

met with an equally positive response: “That is [Support worker], she is great!”

Figure 4.28. (P1). Child with support worker. The NDIS had delivered positive changes for the family, yet, a lack of respite services represented a significant issue.

Although day outings offered a small break to the family, sustainable caregiving

necessitates regular overnight. However, such respite options were “limited” with

only one respite house supporting 90 families. So, despite having a good NDIS

package the service needed is unavailable and familial health continues to be impacted.

Similarly, Hodgetts, et al. (2015, p.682) assert: “Streamlining respite care processes

could have substantial positive impact on parents’ well-being and quality of life.”

Participant 2 is yet to have a NDIS plan meeting and thus yet to access any

funding support. Her child is aged 8 and the Early Years Funding had run out a number

of years ago. Lack of funding had stalled therapy efforts and this lack of any support

caused stress to the mother. This was discussed at length within the interview and

illustrated in the caption:

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We are still waiting for our NDIS planning meeting to make our First

Plan...even though the government has ticked the box to say they have met their target to transfer everyone from existing plans over. Our existing plan was the Helping Children with Autism funding (HCWA), which we expended 2 years ago, nothing since then. So mad! (P2).

Again, bureaucratic processes provoke maternal distress and inhibit effective,

continuous care for the child.

The experiences of Participant 5 were different again. This mother had chosen

to self-mange the plan and felt this option for her, her child, and her family as it allowed

more control and flexibility over funding direction to enable more contextualised, and

effective, supports to be created. Although this mother lived regionally, a large city

was located within 25 minutes of their home and thus she felt there was no real issue

regarding access to services. However, this mother felt that the NDIA lacks

understanding of her child and her diagnostic condition and are blinkered in

considering the needs of her and her family. The initial package the child was afforded

was significantly reduced from her previous funding amounts. This not meant the child

received less support but meant the mother no longer had the child-free time to enable

her work, thus causing her to lose her job. For this family, the loss of this job not only

had financial repercussions but, led to a significant deterioration in the mother’s health

and wellbeing. For this participant the opportunity to work was considered integral to

her overall sense of wellness, providing her with cognitive and social benefits and a

break from the demands of caregiving. Subsequently, the mother tried to contact the

agency to explain the consequences of the funding change and re-establish the care the

child needed: “if they only knew how much work she was.” Advocacy efforts extended

over a number of months, further impacting on maternal health. Eventually, the plan

was reviewed and support hours were lifted, but only marginally. Despite a desire to

work more her ability to do so was capped by numbered support hours:

I called them to say that I needed to keep working because that was my sanity and… Would end up in hospital and that would cost them more money. I got

no response. That didn’t change anything. I kept calling every week and it didn’t change anything. Eventually we did win our case, which I was happy with, but it is something that could have been avoided if they knew how much work she was … I have never been wanting to get funding to waste it. She needs funding because she needs it and so the family can make it (P5).

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Adding to the strain resulting from the decision to reduce hours and her subsequent

job loss, the bureaucratic processes of the NDIS also impacted her lived experience.

Figure 4.29. (P5). “Having a child with ASD is lots of advocating & paperwork.”

Figure 4.30. (P5). “Cold tea and empty lolly jar.” Both annotated images represented the time and stress involved with NDIS.

This stress was consistent across the participant pool, with mothers evidencing at both

photographic and narrative levels degrees of stress related to an increase in

“paperwork”, frustration at bureaucratic processes, and a need to advocate for the

rights of the child. The mothers felt this stressed involvement added to her sense of

“juggle” and “multi-tasking” and had exhaustive and erosive consequences. Systems

and processes more congruent with the needs of the child, mother, and family are

needed to ensure the health outcomes they are set up to provide. Understanding is the

key to creating such supports.

The findings in this section suggest that disconnect between the current NDIS

and families who access the scheme negatively impacts maternal health and work

capacity. The findings from this study align with a recent 2018 Carers NSW Carers

Survey which involved 1830 carers from across NSW and built on the previous 2016

Survey data. In regard to work, 55% of respondents disagreed that NDIS supports

enabled them to stay in, or go back to, paid employment. In regards the bureaucratic

processes, 61% of carers reported an increase in the amount of time spent organising

supports for the people they cared for. The report concluded that “perhaps

unsurprisingly given the ongoing changes to carer support, respondents reported lower

wellbeing than in previous Carer NSW Carer Surveys” (p.32).

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Importantly, the unique data qualities from this study contribute detailed insights into

the factors which accentuate discontinuity between carers and the NDIS. Hodgetts et

al., (2015, p.675) states: “Identifying consistencies and gaps between families’

identified needs and the services offered can help target policies and practices to make

the best use of inevitably limited personal, professional, and financial resources.” To

achieve the desired health outcomes and economic viability needed to sustain the

NDIS, the Government needs to widen the current focus beyond participants (the

child) to consider the health care and work productivity costs of caregiving (Hughes,

2017) while Forster et al., (2016) assert the need for governments to redress

infrastructure discrepancies in regional areas. More needs to be done to support

families, and this study provides valuable information to promote the understanding

policy makers and service providers need to create congruent, effective, supports. The

next sub-section discusses maternal experiences within the community.

4.4.3 Community

This sub-theme explores the intersection between the maternal lived experience

and community perceptions. Findings from this study show that the health/behaviours

of children with ASD often sit in juxtaposition to broader societal norms. Mothers

often needed to navigate “the space between” these societal expectations and the best

interests and needs of their child. In supporting their children, some mothers were

driven to question and potentially change their own traditionally held notions of

standards, expectations, and ways of being. Some mothers were also driven to educate

the wider community towards a greater sense of understanding of, and tolerance for,

persons with ASD. Previous literature considers the social stigma and judgement from

community to be a point of stress for mother of children with ASD (Gray, 2002;

Higgins, et al., 2005; Myers, et al., 2009; Phelps, et al., 2009; Hoogsteen & Woodgate,

2013). Although the mothers in this study may have felt challenged by interactions

within the social sphere, their narratives more communicate feelings of resilience, self-

efficacy, and strength within the mother-child relationship as are positive associations

with feelings of resilience and self-efficacy. These strength-based findings align with

literature by Bayat (2009); Kuhn and Carter, (2006); Neely-Barnes, Hall, Roberts

Graff (2011); Phelps, et al., (2009; 2009b). Such research highlights that parents

experience negative perceptions from the wider community yet find ways to cope with

the stress and are able to see the positive attributes of their child and the benefit of

ASD in their lives. This sub-theme is exemplified in Participant 4’s interview data:

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We’re in one of those backwards towns where you don’t talk about anything.

I have had a few parents where I have told them that my children have autism and they have never spoken to me again. I am not going to hide the fact they have autism. I’d prefer to scream it from the rooftops, it doesn’t bother me. Because I think people need to be more aware of it. I think also the fact that ASD is not a physical disability. If you don’t look disabled, people will find that a bit difficult to understand. (P4).

Despite these community perceptions, the mother does not allow these experiences to

shape her perceived maternal self-efficacy:

No, no, I am more like, I am the one that would wear a shirt saying ‘they’ve

got ASD, they’re not naughty or something like that. I just accept the fact that my kids have a diagnosis and I fully support them. And realistically, I am just trying to get them the help and support they need to maintain they life and live to the full extent. (P4)

Participant 2 also showed how community interactions influence her lived experience

and perceived maternal self-efficacy. Figure 4.31 shows a knot of hair, captioned:

She twists her hair around and around. In one hour she has a knot that cannot be brushed out. It’s been a while since we’ve had to cut some dreadlocks out.

Back to the hairdresser for a pixie cut (which she rocks!) or let her have a shaggy kind of long hair, because I can tell she wanted to have long hair? Living in the space between her needs vs. societal pressures. (P2).

Figure 4.31. (P2): “Living in the space between her needs vs. societal pressures.”

When asked further about the image the mother shared she knew the child wanted long

hair and wanted to honour that choice but also recognised that cutting large chunks out

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of her hair would make her look “strange.” The mother spoke about how this made

her feel. “It is sad, it makes her look odd ... she gets strange looks from people.” The

mother went on to say that in spite of this she “chooses [the Child’s] needs over the

stares.” Similarly, the mother annotated another photo of the child, smiling, at a

butterfly house:

She agreed to put on pants but not exchange her around the house shirt for a going out shirt. I was just happy with the pants on. Many strange looks from adults and kids alike at the butterfly house today but [Child] had the BEST TIME! (P2).

In response to this image, the mother discussed how she responds to the stares and

societal attitudes towards her child:

I just act normally… I don’t try and cover it up or hide [child] or apologise for [Child] or make excuses. I just let it be what it is… I may explain it a little bit,

but otherwise I don’t feel the need. People can stare… if they want to ask they can, but they don’t… I worry about misunderstanding, but not judgement (P2).

The mother states that she worries about “misunderstanding, but not judgement” She

considers herself “a really good parent”: “I know what I do on a daily basis, I know

it is a lot, I know that it is more than many parents.” This evidence links with notions

of self-efficacy. Hastings and Brown, (2002); and Kuhn and Carter (2006) link

maternal self-efficacy to maternal wellness and Rezendes and Scarapa (2011) confer

the buffering relationship between self-efficacy and maternal anxiety depression and

child behaviour. Further, the maternal experiences animate in this study exemplifies

resilience, which Gill and Harris (1991) also link as a stress mediator. Thus, it is the

strength of the mother-child relationship and enduring support for the child that drives

resilience and advocacy in the face of community criticism and perceptions and

through these challenges self-efficacy may eschew. Again, these findings provide

another strength perspective on the maternal lived experiences of caring for a child

with autism and contribute to the field of literature. Section 4.4 has explored the

second central theme in response to the key research questions – what are the lived

experiences of mothers of children with ASD? Findings show the maternal experience

to be shaped through her intersections with external systems of education, NDIS and

health care, as well as community. Perceived understanding of ASD, the child, and

the family determine these experiences. Section 4.5 will discuss the third central

theme finding - maternal experience of wellness.

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4.5 MATERNAL EXPERIENCES OF WELLNESS

Section 4.5. explores how mothers in this study experienced wellness. Aligning

with the WHO’s (2017) multifaceted definition of wellness, this theme examines

maternal experiences of mental, emotional, physical health (4.5.1.); respite (4.5.2.);

intrinsic coping strategies (4.5.3.) occupational and leisure engagement (4.5.4.) and

self-identity (4.5.5.). The findings attest to the complex interplay of factors which

influence the lives of mothers caring for children on the spectrum (Lutz, et al., 2012;

Markoulakis, et al., 2012; Marshall & Long, 2010; Pakenham, 2003). “Juggling”

epitomises this theme with all participants clearly linking feelings of “exhaustion” and

“stress” to “multitasking” and “constant”, “complex” child health/behaviour, thus

reflecting multiple prior findings (Bayat, 2007; Bitsika, et al., 2013; Bromely, et al.,

2004; Gray, 2002; Hoogsteen & Woodgate, 2013; Kuhn & Carter, 2006; Lutz, et al.,

2012; Pakenham, 2003; Savage & Bailey, 2004). Mothers’ described intrinsic and

extrinsic strategies they rely on to cope and negotiate tensions between, at times

competing life aspects, to reorientate towards wellness. Discussion will now overview

the literature before unpacking visual narrative evidence.

Consistent with the literature, mothers in this study experienced deteriorated

levels of physical, mental, emotional health (McGuire et al., (2004); imbalance to their

occupational leisure pursuits (Rizk, et al., 2010); shifts within relationships (Bromely,

et al., 2004; Lutz et al., 2012; Savage & Bailey, 2004) as well as changes to self-

identify (McGuire et al., 2004; Savage & Bailey, 2004). The findings from this visual

narrative study deepen discussion into this well-founded assignment of vulnerability

to provide insight into the ways in which mothers cope with the vulnerabilities and

move towards a greater sense of maternal wellness. Importantly, mothers are active

agents in creating wellness and the findings contribute a strength perspective on

caregiving (Bitsika et al., 2013; Gill & Harris, 1991; Hastings & Brown, 2002; Kuhn

& Carter, 2006; Marshall & Long, 2010; Phelps, 2009; 2009b).

Clear is maternal reliance on cognitive strategies to generate qualities of

resilience and self-efficacy, as well as acceptance, and this echoes previous maternal

research within the literature, (Bayat, 2007; Bitsika et al., 2013; El-Ghoroury, 2012;

Hastings & Brown, 2002; Kuhn & Carter 2006; Lutz, et al., 2012; Marshall & Long,

2010; Myers, et al., 2009; Phelps, et al., 2009; Whitehead, et al., 2015; Windle &

Bennet, 2011). Importantly, this study showed that cognitive strategies and personality

attributes are not isolated to the individual but shaped through her experiences,

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relationships and interactions. This aligns with Rezendes and Scarpa’s (2011)

assertion that resilience is a flexible, rather than fixed trait as well as Windle and

Bennett’s (2011) social ecological definition of carer resilience. Of note is the visual

narrative evidence of how participants actively constructed self-identity, reflecting

Richely and Brown’s (2007) emergent-self model which considers the value of the

person’s experiences, relationships, and their cultural self. The visual narratives in this

study animated both the variability within the individual maternal experience, as well

as variability of lived experiences across group (Bayat, 2007). Each aspect of the

mothers’ experience of wellness is now presented.

4.5.1 Mothers physical, mental, emotional health

Mothers in this study were not asked directly to discuss their health, however, it

emerged as a prominent theme at both semiotic and narrative levels for all 5

participants. Mothers described themselves as “anxious”, “stressed”, “depressed”,

“in a bad mental state”, “down”, “so out of my depth” and used descriptors such as

“a struggle”, “isolating”, “hard”, “difficult”, “challenging”, “feeling extremely

trapped”, in “survival” when discussing their lived experiences caring for their

child(ren) with ASD. These adjectives reflect other qualitative studies involving

mothers of children with ASD, including McGuire et al., (2004). All participants

linked feelings of deterioration directly to their caregiving duties and a clear

relationship between ‘maternal health’ and ‘heath/behaviour of the child’ was evident

across the data sets. This symbiotic relationship between the health of the mother and

health of the child is well-founded within the literature (Bayat, 2007; Bitsika, et al.,

2013; Bromely, et al., 2004; Gray, 2002; Hoogsteen & Woodgate, 2013; Kuhn &

Carter, 2006; Lutz, et al., 2012; Savage & Bailey, 2004). An illustration of this within

this research is by Participant 5, who submitted annotated photograph, Figure 4.32.

Figure 4.32. (P5). “The bittersweet medications.”

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Participant 5 shared that she did not like taking the anti-anxiety medication, yet, felt

unable to stop due to the child’s health/behaviour. Participant 4 also directly related

her child’s health to her own deterioration in health (Figure 4.33 & 4.34), sharing: “I

am just getting over a chest infection, and last year I have influenza A and pneumonia

all at the same time. So, I get pretty sick.” This mother also described “chest pains”,

“hospital trips”, and “anxiety”, all related to stress. Further, this mother told that on

one occasion she was so sick that she was unable to attend an Early Intervention

Assessment for her child and thus was unable to secure the necessary funding. Again,

this evidences the bi-directional relationship between maternal and child health child

and promotes the pivotal role of the mother in their child’s development and treatment

processes (Pakenham, 2013).

Figure 4.33. (P4). Steamer in bedroom.

Figure 4.34. (P4). Cough mixture and chicken soup. A number of this mother’s photographs evidenced deteriorated maternal health.

All participants reported experiencing exhaustion as a consequence of complex,

constant caregiving and the juggling of competing demands of the child(ren) with other

aspects of life. Participant 2 stated: “the juggle is the biggest overriding factor” and

shared her difficulties in “trying to keep all the plates spinning” and the stress related

to “transition from one hat to another, multiple times a day.” Participant 3 shared her

stress from “trying to juggle everything”, similarly, Participant 4 stated that meeting

all demands required “quite a lot of juggling”. This theme was significant across

photographic and narrative data. Participant 2 included an image of a juggler (Figure

4.35) while Participant 3 photographed a clock to represent the length of time taken to

attend to all tasks (Figure 4.36). Participant 4 photographed her child’s writing on a

whiteboard and told how she had set the kids up with a drawing activity to enable her

to work (Figure 4.37) and image (Figure 4.38) captured her monthly calendar, which

included children’s health appointments and school events along with work, moving

to a new house, and divorce. Several of the mothers commented that they felt the sense

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of juggle was common to all working mothers, “however ASD added an extra layer -

it just doesn’t stop!” (P2). Exhaustion related to the cumulative demands of having a

child with ASD is consistent with research by Hoogsteen and Woodgate (2013) and

resonates with the 2011 Australian study by Giallo et al. which equates high levels of

fatigue with high levels of depression, anxiety, stress.

Figure 4.35. (P2). “Juggling like a mad woman! Always!”

Figure 4.36. (P3). “10.03pm – And finally dinner time. Last kid just gone to sleep.”

Figure 4.37. (P4). Mother set up whiteboard to busy her children while she worked.

Figure 4.38. (P4). Monthly schedule illustrating how busy she is.

The literature describes the impact of sleep on maternal health and the findings

in this study echo the significance of lack of sleep on maternal wellness (Giallo, et al.,

2011; Hoogsteen & Woodgate, 2013). Mothers in this study stated they “suffer from

sleep deprivation” (P2&P5); “start the day wanting to go to sleep” (P2); are “always

tired” (P2, P4, P5); and all participants referred to themselves as “exhausted”. Sleep

was identified as a “huge factor” in their ability to cope, as Participant 2 specified, “I

need sleep for resilience and to cope.” Participant 5 echoed this need for sleep:

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Because when [I am] tired it is just this raw nerve and I don’t cope with things

as well as I should… See today I am crying because I haven’t had enough sleep and when I don’t have enough sleep I always, umm, I take things a bit harder than I should (P5).

Participant 5 was one of two participants who used a self-portrait to

communicate exhaustion and annotated her image with the caption “I am tired,

another bad night.” This was similar to the annotated self-portrait taken of Participant

2 which told of her extreme tiredness and the child’s 3.30am wake up. Similarly, a

filtered image of a sleeping child by Participant 4 showed the words: “Awake 6am,

asleep 9pm.” Use of self-portraits and filters may indicate the significance of this issue

to the mothers. The data are consistent with the studies by Meltzer (2011) and Hodge,

et al., (2012) confirming the direct impact of children’s sleep on maternal mental

health. For example, Participant 2 captioned a photograph (Figure 4.39) of a vitamin

supplement designed to ‘support memory, energy, and cognitive performance’:

Figure 4.39. (P2). “Years of constant sleep deprivation and high stress have taken their toll on my cognitive abilities. Forgetting how to spell basic words, slower processing time … Health is so

important.”

Significantly, although this mother evidenced health vulnerabilities, she also

recognised the importance of her health and acted to support herself. This finding is

congruent with Hoogsteen and Woodgate (2013); Vickers and Parris (2005); and

Woodgate et al., (2008) who also found parents of children with ASD often sacrificed

their own needs, yet also realised their health was important and considered the need

to address their health as significant.

This evidences a sense of agency by the mother and as such contributes to a

strength perspective. This study found raising a child with ASD presented a myriad of

distinctive challenges and in response participants demonstrated a range of intrinsic

and extrinsic strategies to redress health vulnerabilities and promote feelings of

wellness. Of value is the capacity of the visual narrative data to provide deeper insights

into understanding how and why mothers use various supports – such information is

vital to professionals looking to effectively support maternal caregivers.

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4.5.2 Maternal experiences of respite

Respite was a popular coping strategy mothers in this study used. All of the

participants evidenced some form of respite and promoted respite as beneficial to their

physical, mental, emotional health and an opportunity to connect in which their sense

of self (self-identity). These findings confirm the literature (and caregiver policies)

attesting to the pivotal role of respite in supporting caregiver health sustaining the

long-term caregiving required from mothers of children with autism (Bourke-Taylor,

et al., 2010; Carers Australia, 2015; Hodgetts, et al., 2015; Rose, Noelker, Kagan,

2015; Savage & Bailey, 2004). The data showed a variety of ways in which mothers

achieve respite. For Participant 1 formal respite was dependent on, and limited by,

service availability and limited overnight respite facilities. Yet, respite was crucial to

her health and critical to the long-term sustainability of care, as evidence in her

interview narrative: “It is a matter of just getting through the periods in between my

respite. And looking forward to those times. So that is what gets me through.” Whilst

this story portrayed notions of survival, other mothers discussed respite as essential

but more offering a sense of fun. Participant 4 included a visual narrative of her

“freedom night”, a social night out with friends enjoying a band (Figure 4.40). This

night represented not just an important break from caregiving responsibilities but

symbolised the re-building of her life following a marriage breakdown. In this way,

respite provided an opportunity to connect to a sense of self beyond mother and

caregiving. Similarly, McGuire et al. (2004) found mothers of children with ASD

often express confusion over self-identity due to their pervasive caregiving demands.

Figure 4.40. (P4). “Freedom!” Mother shows a night out with a friend.

Figure 4.41. “A moment of stillness.” An opportune moment of respite.

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Mothers also showed respite was achieved within small “moments in time” and these

were considered by participants to be valuable and more achievable in their daily lives.

For example, Figure 4.41, submitted by Participant 2, was annotated: “A rare moment

of stillness in the sunshine.” The mother had taken advantage of a work meeting

finishing early to secure a few minutes for herself. She stated, she “needs this” and

“appreciates just 1 minute of stillness.” Similarly, Participant 5 included a self-

portrait, in the sunshine, with the annotation, “going outside to breathe the fresh air”

(Figure 4.42). In the interview she elaborated:

I attend to everybody’s needs, I have always put myself last. So, I just try to grasp the little times. Fresh air, I have a smile, I am outside, I am looking at the plants and I was just like, wow this is nice outside, we are so lucky to live outside and not in a flat and I just try to make the little moments count. (P5).

These findings suggest the importance of respite and provide understanding into

cognitive strategies and intrinsic characteristics mothers rely on to cope with the

distinctive challenges that autism presents.

Figure 4.42. (P5). “Fresh air.” A moment in the sunshine invited feelings of reprieve, optimism, and reframing.

4.5.3 Intrinsic coping strategies

This sub-section evidences the intrinsic coping strategies mothers in this study

relied on to meet the pervasive challenges ASD presented to their lives. Given the

inherent vulnerabilities associated with maternal caregiving, it is not enough to know

stressors exist, but more important to understand how and why some mothers cope

with those continued stressors and orientate towards greater feelings of wellness

(Myers, et al., 2009). The findings in this study are valuable as both Visual Narrative

Inquiry methods and Thematic Analysis afforded the capacity to scan photographic

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and narrative data sets for both surface and underlying systems of meaning (Bach,

2007; Braun & Clarke, 2006). As such, the findings provide insights into the internal

attributes and cognitive strategies mothers used to cope. This discussion will focus on

evidence of meaning making strategies, and the way mothers used this strategy to

relocate dispositional optimism and generate feelings of resilience and self-efficacy.

All of these are considered within the literature as important to buffering mothers from

the vulnerabilities associated with maternal caregiving (Ekas, Lickenbrock, Whitman,

2010; Willis, et al., 2016; El-Ghorough et al., 2012; Hastings & Brown, 2002; Kuhn

and Carter, 2006; Rezendes and Scarpa, 2011; Phelps, 2009b).

Dispositional optimism is the first intrinsic attribute discussed. Dispositional

optimism is a key determinant to maternal wellness (Ekas, et al., 2010; Willis, et al.,

2016) and was evidenced in this study by Participant 5. In the above Figure 4.41,

“Fresh air”, this mother showed how she coped with the demands of caregiving by

re-orientating \to positive aspects of her life. For this mother the concept of happiness

was overridingly important. She considered herself to be inherently optimistic,

however, confided to feel her child has “broken my happy nature.” Her data showed

multiple symbols of happiness and these images act as a hook to relocate feelings of

optimism. For example, she included two images of flowers (Figure 4.43 & 4.44) and

shared: “when I was a kid we had flowers in the house all the time… and so it makes

me think of my mum and this is a good feeling. I guess, it is a happy thing.”

One of my favourite life quotes is a French one, ‘Il faut avoir le courage d'être heureux- One must have the courage of being happy.’ We are not born happy or unhappy … we can all at our own level rejoice on the little things or pleasures that life brings us, grasp on them and make the decision to turn their beauty into our happiness. (P5).

Figure 4.43. (P5). Flowers from her garden.

Figure 4.44. (P5). Flowers given to her as a birthday gift. Flowers represent happiness to the mother.

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Dispositional optimism contributes to overall psychological well-being in

parents of children with ASD (Ekas, et al., 2010; Willis, et al., 2016) and serves as a

protective factor for mothers of ASD, moderating symptom severity of mental health

(Barker; Blacher, Olsson, 2005; Willis, et al., 2016). However, optimism is not the

only aspect in the wellness equation and needed are other intrinsic attributes and

strategies (Ekas et al., 2010).

Literature attests the importance of reframing strategies such as meaning making

to harness attributes of resilience and self-efficacy in parents of children with ASD and

promote wellness (Bayat, 2007; El-Ghorough et al., 2012; Hastings & Brown, 2002;

Kuhn & Carter, 2006; Myers, et al., 2009; Rezendes & Scarpa, 2011; Phelps, 2009b).

The narrative of Participant 5 revealed the cognitive strategies she used to reframe and

generate feelings of resilience and self-efficacy:

It is much harder than I thought it would be. And I honestly thought that if anyone could deal with this journey I could, but some days are just too hard. So, I am not going to lie. I try to keep strong and do my best but some days it

is just really hard … Some days life can be challenging and trying to remind myself I am not doing too bad can be challenging (P5).

These findings echo El-Ghorough et al.’s (2012) study where maternal participants

showed desire to see beyond the challenges associated with ASD and locate strength.

Similarly, the narrative of Participant 2 showed reframing processes as she told how

she redefined internal priorities and values and adapted her life to autism: “I try to

accept it, not fight it” and “I have learnt to settle for less, less in terms of quality and

quantity.” A further interview extract from Participant 2 further insights how she

reframed challenges into strengths:

People that haven’t experienced disability and high levels of care within the family, they are often very concerned with trivial things. They don’t have the same resilience or patience that we have and not the same level of compassion

that we have, for ourselves. I feel sorry for them a bit that they don’t experience that (P2).

These findings echo the narrative study by Marshall & Long (2010, p. 209) in which

participants shared the need to “let go of prior expectations” and “redefined what it

meant to be blessed.”

Participant 2 evidenced resilience and self-efficacy in the following response

to a behavioural incident with her child: “I don’t see benefit from getting angry… It is

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about being solution focussed and taking a long-term picture. It is about putting myself

in her shoes. I try to do that.” The participant considered her attitudes as part of her

nature as well as a skill she has learnt: “It is definitely me, but I have needed to work

on that as well. I would not have known that 10 years ago.” This aligns with

Whitehead et al., (2015) who define resilience to be a flexible and adaptive process, as

opposed to a fixed trait as well as a study by Phelps et al.’s (2009) in which mothers

showed a remarkable ability to refocus and locate strengths and abilities previously

untapped before ASD came into their lives.

Participant 1 has a different experience of coping:

I have learnt to switch off from the magnitude of my life. And the challenges… otherwise if I was so concerned about all the iddy-biddy bits that aren’t right in life than I’d, I’d probably, ahh, walk out. You know, so I’ve just had to mentally I guess… I don’t know… I don’t know what the word is... Go with the flow a little bit… and not take things too seriously… I know that it is not

going to be forever… But you know, there are so many other thousands of parents going through it. So, I have just tried everything to try and work through these challenges. And I feel successful. I feel like I have done it. I don’t feel that it has gotten the better of me (P1).

Again, there is clear evidence of resilience, self-efficacy, and meaning making. It is

the negotiation of external and internal tensions that shaped the mother’s sense of self

and her ability to retrieve positive aspects from lived experiences. These stories of

strength are an important contribution to the literature corpus which tends to focus on

the vulnerabilities associated with caregiving. Mothers in this study considered these

internal coping reserves to be more effective than reliance on external supports.

An early study by Gill and Harris (1991) found internal attributes offer a more

sustainable buffer to stress than reliance on external supports - which were deemed

valuable based on quality versus quantity. Similarly, mothers in this Visual Narrative

study judged external supports valuable if they offered acceptance, understanding and

emotional resonance. For example, Participant 2 stated she felt more “internally

resourced” and “does not feel lacking” from an absence of social support. Whilst she

acknowledged the benefits of sharing her challenges with others, she is clear that for

external supports to be beneficial they need be strength-based and accepting rather

than from a place of pity or judgement.

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Participant 3 noted how her social circle has changed as a response to her

children’s autism; some friends “they just get it” while others have faded with less and

less in common. Further, Participant 3 stated she “would crumble” without the

practical help offered by her extended family yet indicated that the support at times

was not reliable as she perceived they did not understand the complexities of ASD and

caregiving. Participant 4 felt that her extended family “didn’t understand” and rifts

were emerging within the family. Participant 3 shared she felt supported by her

mother, who, although lived in France, was accepting of her caregiving challenges and

provided her reliant mental and emotional support. This suggests that an external

support is perceived to be valuable or not based on perceived understanding and also

suggests that internal attributes are considered more reliant. A source of external

support which was found to be beneficial to mothers was that of work, yet again, the

relational benefit was convoluted.

4.5.4 Occupational engagement

Occupational balance is a varied and complex experience for mothers, however,

predominantly the ability to work was linked positively with maternal wellness. The

photographic and narrative data revealed strong links between work and maternal

wellness, with interrelationships existing between the themes of work, maternal health,

and self-identity. Significant thematic relationships also exist between work and child

health/behaviours external systems. Section 4.5.5. discusses how these themes shape,

and are shaped by, the maternal lived experience of work. Benefits and barriers to

work are discussed with the findings again contributing to the complex, varied

experiences of mothers of children on the spectrum and confirming that relationships

between caregiving, health, and work are not straightforward. These findings are

consistent with research by Bourke-Taylor, et al., (2010; 2011); Hodgetts et al., (2015);

Rizk et al., (2010); Savage and Bailey, (2004).

This research project revealed occupational engagement to be highly

individualised and dependent upon familial circumstances, at that point in time. For

all participants, work – or the prospect of meaningful occupation engagement –

represented a positive aspect in their lives and contributed in some sense to maternal

wellness. However, for all participants this also negatively impacted on feelings of

wellness, contributing to her sense of “juggle” and the “layers of stress” in her life,

thus echoing previous studies by Rizk et al., (2010).

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Mothers in this study considered work to be a positive contributor in their lives.

They shared, “work supports my mental health” and felt work promoted a sense of

“normality” and “sanity.” A number of participants referred work to be their “day

off” - a break from caregiving. One mother said: “Work makes me happy. I forget

about everything else… It can be very isolating when you have a child with special

needs.” Other mothers commented on the social benefits of working, a “connection”

to other people, an opportunity to socialise, engage in adult conversations, and

mentally stimulating work processes. Essentially, work gave something to them. Work

shaped self-identity and provided fulfilment beyond the role of mother and caregiver

and this was evidenced particularly through the semantics in their narrative data.

Participants identified themselves positively within their occupational role: “I find that

it is very nice to have that time for me. It is me doing something for myself. I like my

job, I like my career, I am a registered nurse… it is a very positive role.” Participant

2 provided further insight:

There are plenty of days when I wish I was at home doing my own stuff, then I would be on top of everything. But I also know through experience that work is what gives me something outside my own … it gives back to me, in the way

that I am not just giving out to family and home. So, it supports my mental health to work. And – because I will not always be [Child’s] carer, perhaps. I need to keep my own life going in a way. It is like that connection to the outside world (P2).

These findings echo an earlier study by McGuire et al., (2004) who found workforce

engagement to be linked with increase social benefits and decreased feelings of

isolation, improved self-esteem and a sense of self outside of being a mother of a child

with a disability. Similar to the mothers in McGuire’s study, participants in this Visual

Narrative Inquiry evidenced a desire to work more yet showed their capacity was

capped. Similarly, the 2018 Carers NSW Carers Survey found reduced working hours

and exiting employment to be the most common career impact. In this project, work

represented a positive, yet complicated, experience and caregiving demands fractured

occupational engagement. The implications of this are now discussed.

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Figure 4.45. (P3). “Heading off bright and early to a work conference in the city. This was my favourite part of the day.”

Figure 4.46. (P3). “My day away from home at work. The boss took the staff out for a Vivid cruise. It was such a lovely thing to do.”

The fracturing of occupational engagement due to caregiving demands is well

founded within the literature (for example, Baird, 2018; Bourke-Taylor et al., 2011;

Savage & Bailey, 2010). In this study, mothers recognised work as a positive

contributor to their mental health and indicate desire to work more. Yet, at the same

time, mothers also reported a reduction in work hours to accommodate the needs of

the family and support their own sense of health. Again, this resulted in mixed

consequences – while health and family, at some levels, was supported, there was

financial and job security implications to their decision. For example:

We could definitely do with more hours, and money. But, I have had to come to that decision of backing it off even more. It has taken a lot to come to that, but I am feeling better now for it. Definitely less stressed. This week has been much better (P3).

Reducing hours comes with the possibility that, in 6 months, when they redo budgets, I will be made redundant from that job. And so that will add another layer of stress. At the moment it is working for me, but that is in the back of

my head. And if that happens … I am not sure I would be in a position to apply for another role… I don’t think there would be another role that could accommodate my needs for extreme flexibility (P3).

Similarly, Participant 2 shared: “I was doing 21 hours, but I have had to reduce to 18

hours a week. But that feels like full time” and “It was just an extra thing.”

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The findings evidenced the difficulty of achieving maternal occupational

balance and provided insight into workplace attributes that may support carers’

engagement. Given carers and work is a significant issue within the current policy

climate, examining the qualities of supportive workplaces is important (Baird, 2018;

Carers NSW, 2018). Participant 3 in this study flagged workplace “flexibility”; a

“supportive” network of colleagues; and a caring, understanding management

team/company contributed to her positive experience and willingness to work more.

For example: “This particular company they say as they do, they say they care about

their employees, their work life balance and they actually follow through with that.”

Interestingly, although this mother appreciated flexible working arrangements,

including a work-from-home option, this also represented a negative impact on her

health as it added into her sense of “juggle.” A more definite line between work and

home was appreciated: “I quite like a reason to go away, really, and be away” (P3).

A significant barrier to work stemmed from discontinuity in autism support,

including education. This discussion has previously traced how a reduction in support

funding led to a mother losing her job with consequences to sense of mental,

emotional, and physical health. Discussion has also traced how schooling suspension

policies create a volatile and unpredictable situation for Participant 2. She felt

“cornered” by the DET, was unable to work and the compounding stress of this

situation further distanced even a consideration of the possibility. The inability for

Participant 2 to work, or even contemplate a regular job, drew into discussion the

potentiality of work aspirations, the value of caregiving, and construction of self-

identity. This participant used to run her own interior design company “BC”, before

children, yet no longer has the energy or desire to uphold the image required within

this industry. Her life and interests are now shaped by ASD and her caregiving

experiences, which she deemed valuable. This mother used her love of music to create

innovative ways to connect with her child and her passion led her to study art therapy

and create modules encapsulating her invaluable knowledge and “be able to share that

with others.” This mother commented that whilst she “could just go and pack shelves

at the supermarket”, ubiquitous caregiving responsibilities, limited time and energy

do not make this a viable solution. She would prefer to direct her limited resources to

pursue meaningful occupational engagement.

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4.5.5. ASD as a gift or burden? Personal Insights of Mothers

The maternal experience of raising a child with ASD is complex and varied and

the experiences of the maternal participants in this study are reflective of this.

Throughout this chapter thematic discussion evidences how the complexities and

realities of caregiving sculpt the maternal experience and often force a re-definition of

priorities, hopes, visions, outlooks, and sense of self. This sub-theme focuses on how

caregiving responsibilities shape this inner landscape. Maternal narratives evidence

the breadth of lived experiences: “Autism is a gift”; I know in my heart that it has

actually enriched my life” (P1). “I am more patient. I am more easy going” (P2).

“But through everything I have learnt a lot about autism” (P3). “I have learnt so

much” (P4). “I definitely don’t think that living in a family with autism has made me

a better person; having a child with autism has made me not as good as a parent as I

could have been” (P5).

This variance reflects the work of Lutz, et al., 2012; Markoulakis, et al., Marshall

and Long (2010); Pakenham, 2013 all of who describe the blurring, duality, which

exists between caregiver stories, and within individual stories. There is a co-existence

and undulation of vulnerabilities and strengths that cannot be locked or polarised.

Consistent across the data was a reorientation away from life’s superficial distractions,

towards more valued priorities. The realities of caring for a child with ASD had peeled

back the layers of life towards its essence. “Image” (P5) and “iddy-biddy bits” (P1),

“trivial things” (P2) and “keeping up” appearances (P1) no longer magnetised

attention and “family”, “kids”, “relationships”, “health”, “time” and “hope” were

dominant descriptors used by all participants. Mothers centralised the needs of the

family against, often opposing, societal expectations. Their love for their children

fortified an internal resolve and radiated through their actions to enact necessary

supports. This was expressed by Participant 5:

I just want to be the best parent I can because I want to educate and help my kids the best way I can, no matter what their challenges are. I want the kids to know that we don’t have the easiest life or the perfect life but we do the best we can with that and the best we can is ok. (P5).

This study showed the struggles and triumphs associated with ASD and the

different ways mothers mitigated stress to embrace meaning and wellness. In this way

the study contributes to our appreciation of the lived experience (Myers, et al., 2009;

Marshall & Long, 2010). This section unpacked the influence of child

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health/behaviours on the lived maternal experience of wellness to show mothers found

traction against these persistent vulnerabilities by relying on a range of coping

strategies. Participant visual narratives promoted the value of respite and opportunities

for workforce participant and the unique properties of the data afforded insight into

the intrinsic coping strategies, including meaning making attempts. The maternal

experience of wellness was shown to be varied and variable. These notions of

nebulousness and complexity characterised all three central themes found in relation

to research question one and the findings are of value to the policy makers and service

providers who are looking to effectively support children with ASD, and their families.

Discussion will now focus on the findings in relation to research question 2.

4.6 MATERNAL USE OF PHOTOGRAPHIC JOURNALING AS A REFLECTIVE TOOL

This study asked a secondary research question; how do mothers of children with

autism use photographic journaling as a reflective tool? In formulating a response, it

is beneficial to overlay the definition of reflective practice onto the mothers’ visual

narrative data. Chapter 3 defines reflective practice as an active process which

promotes understanding to improve and transform ways of thinking and working

(Clara, 2015; York-Barr & Sommers, 2001). In relation to the research question it is

necessary to consider how mothers in this study use photographic journaling to

transform their relationships with self, others, and their world. Further, as per Clara

(2015) and York—Barr & Sommers (2001) definition of reflective practice, how do

mothers invite deliberate pause, a purposeful slowing down, and thus greater sense of

psychological space? How does photographic journaling invoke high order thinking to

enable broader, contextual consideration? And how does this photographic process

deepen new perspectives through new actions?

In responding to the second research question, the data was coded for ‘process’.

Analysis revealed this code to interlace all data sets yet was more pronounced within

the narrative data (both the captions and semi-structured interview transcripts) and less

within the photographic. This suggested that the act of narrating the images deepened

thought and/or made visible the cognitive and emotional processes of reflection. In

this way, the study finds congruence with the work of Bach (2001;2007) who suggests

Visual Narrative involves a living and telling of one’s story; a framing and reframing

of experiences; an ongoing dialogue; and is more than an attachment of an isolated

image to a research project. Importantly, the study showed photographic journaling to

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be a tool which promoted maternal wellness. The data revealed five ways which

mothers used photographic journaling; as a storytelling device (Section 4.6.1); to make

meaning (4.62); to create happy snaps and keepsakes (4.63); to capture moments of

stillness (4.64); and as an innovative communication and relational tool (4.65). Each

of themes will be presented as an upcoming subsection.

4.6.1 Storytelling

The first way mothers used the process is as a platform for storytelling to an

external audience. The linguistic, semantic level of the data captures expressions, such

as: “I have to take a photo to show you…” (P1). “I was thinking how to show our life,

as a mum with kids” (P4). “It was interesting to consider what to take a photograph

of…” (P4). “I took a photograph of that to show that having a child with ASD

means…” (P5). Across the narratives is a tone of intention, a deliberate consideration

of what will be framed and what she feels the need to communicate. Essentially, what

story she would like the audience to know. In this way the mother finds ‘voice’,

expressing her story and in doing so harnesses a sense of agency (Wang & Burns,

1997). Mothers tended to use the photographic process as a storytelling mechanism to

communicate issues which involve a level of advocacy or desire to affect personal and

societal change. These findings resonate with the literature on Photovoice which

attests to the benefits of marginalised individuals/groups reflecting upon and

communicating issues with the goal of change (Wang & Burns, 1997) as well as

utilising visual research methods within disability and caregiving populations (Ha &

Whittiker, 2016; Walton, et al., 2012).

Participant 4 included a photograph (Figure 4.24) of paperwork and an NDIS

service agreement and her narrative told how the service agreement to secure

Occupational Therapy support was abandoned, leaving her children without support.

The mother was desperate, and determined, to secure her children the therapy they

need. She felt strongly about the lack of services in her regional area, as well as

frustrated with the bureaucratic process of the NDIS. She made continuous advocacy

attempts to inform her Federal and State members about her situation and shed light

on the issues, however, she was yet to receive an audience and her advocacy attempts

were met with a wall of silence. She used the Visual Narrative process to intentionally

frame her story to highlight the obstructing disability funding policies and practices

and give voice to unheard advocacy cries. In this way she used the visual process to

express and draw attention to her story and disrupt the power discourse (Purcell, 2007).

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Participant 1 intentionally photographed a number of health/behavioural

incidences to shed light on the intensity she faced on a daily basis (Figures 4.5, 4.19,

4.20, 4.21). The intentionality of storytelling is illuminated in such statements as; “I

just wanted to show you that is something I have to deal with early every day” and “I

have to take a photograph of this, because, you know, it is extreme.” Through the

photographic process she looked to communicate the pervasive challenges of

caregiving to an external audience. A photograph showing a continence suit, left on a

heater, after the child departed for school (Figure 4.47) was described as “symbolic”

of the immense distress her whole family suffered following significant disruptions to

the child’s schooling. The mother made sustained advocacy efforts to reinstate his

attendance, yet the situation was ongoing and precarious. In addition to storytelling,

this mother may also use the process to make meaning of a complex care situation.

Figure 4.47. (P1). Continence suit left behind after the child left for school. Mother had to race to get this up to the school. The image was “symbolic” of her ongoing problems with the school.

4.6.2 Meaning making

Meaning making is the second way mothers use the photographic journaling

process as a reflective tool The nexus between arts-based reflective practice and

mother caring for children with ASD is meaning making, considered an important

cognitive reframing strategy for maternal caregivers (Bayat, 2007; Hastings & Brown,

2002; Kuhn & Carter, 2006). Evidence of meaning making is threaded through all five

ways in which mothers use the photo journaling process, yet the data showed mothers

specifically used the process to make meaning thus is also considered in its entirety.

Evidence of meaning making runs throughout the visual narratives of all

maternal participants. In another example, the narrative accompanying Participant 2’s

boxer image (Figure 4.2) shows deliberate use of the photographic process to make

sense of her traumatic experience:

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I straight away knew the image I wanted to use for the day, to represent my

morning. And I thought that lady looked, she didn’t look like she was an aggressive boxer. When I looked for photograph…. (P2).

The participant uses the process intentionally as a vehicle of internal

expression/resolution and evident is her awareness of self and importance of her

relationship with her daughter. In this way she reframes the challenging situation to

focus on love for the child and acts to solidify within herself desired future response:

“I don’t want her to become upset because she has hurt me. I don’t want to come

across as angry with her …” This evidences the reflective qualities of transformation

and deepening perspectives through new behaviours (Clara, 2015; York-Barr &

Sommers, 2001) and shows how visual narratives enable a reframing of autism to

identify and express strengths (Ha & Whittiker, 2016) and thus may contribute to

maternal wellness (Bayat, 2007; Hastings & Brown, 2002; Kuhn & Carter, 2006;

Myers, et al., 2009). Similarly, in relation to Participant 1’s experiences of intense

child behaviour, told above in Section 4.6.1., the mother went on to describe her son

and ASD as a “gift”. Further, she commented that the photographic journaling process

made her “more conscious of what was going on.” Thus, photographic journaling drew

her into contact with the immediacy of the situation to enable assessment and change.

4.6.3 Happy snaps and keep sakes

A popular way in which participants used the photographic process was to

capture and reflect on situations, events, people, and objects which made them happy

or were positively memorable/significant. The participants shared the process gave

them a portfolio of images they could refer back to and a keepsake of this period of

time in their lives: “I will have those images forever now” and “So, I took a photo of

that, because I just thought that was beautiful … I was so grateful” (P1). “It was a

nice photo to record the day” (P3). “It was interesting to look back at the

photographs” (P4) “A reminder of happy moments … great keepsake, thinking back

through the memories” (P5).

‘Happy snaps’ and ‘keepsakes’ may sound trivial, yet the profundity rests on

the how the process informed cognitive coping strategies for mothers and helped build

feelings of self-efficacy and resilience and relocate feelings of optimism. Within the

literature, these qualities and strategies contribute to maternal wellness (Bayat, 2007;

Hastings & Brown, 2002; Kuhn & Carter, 2006; Lutz, et al., 2012; Myers, et al., 2009).

An example in this study was seen through Participant 1’s discussion of Figure 4.48.

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Oh! [Child] wrote his name! That’s right! That was just so beautiful! See,

these are the things that, you know when you are a parent, and your child, even though he is 13, he writes his name, it is just so thrilling. Such a joy to see!

Figure 4.48. (P1). Child’s writing.

Here, a clear surge of happiness localised with the challenge and the photo became a

visual reminder of this moment. The process of identifying and returning to positive

achievements supported this mother’s immediate sense of wellness yet may also

support sustained caregiving effort. Happiness is a theme which permeated the visual

narrative of Participant 5. The mother considered herself to be a “happy”, “smiley

person” yet confided to feel her child had broken this optimistic disposition. She

submits a number of photographs showing people and objects that “make her happy”:

I didn’t actually think, that would be a good photo, it was more that when I did something that made me happy or when the family was making me happy or when I did something special, I just thought, ‘this is quite relevant to my day and this is what I can send today’ (P5).

Her narratives provided insight into how she used happy images as both a way to make

meaning, as well as a ‘hook’ to relocate feelings of optimism within more challenging

times: “I have got the index in front of me and I see my happy face over there and I

just think, oh well, tomorrow will be better” and “I rejoice in the little things or

pleasures that life brings us, grasp on them” (P5). Reflective practice offers an

opportunity for mothers to reconnect with positive internal qualities, such as optimism,

to buffer and sustain the challenges associated with raising a child with ASD. The Arts

has the ability to connect cognitive, emotional, and spiritual process and generate a

deep seated knowing and helps make sense of our world (Wright, 2013).

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4.6.4 Moments of respite

The fourth way in which mothers used photographic journaling was to capture,

then reflect on, moments of respite, a deliberate pause within their day (Clara, 2015;

York-Barr & Sommers, 2001). The benefits of respite have been discussed above, this

section unpacks how photographic journaling further promoted the positive feelings

associated with respite. All participants submitted at least two photographs capturing

moments of respite. These photographs represented a break within their caregiving

duties and became an opportunity to relocate a greater sense of themselves. Participant

1 included a storied collection of images (Figures 4.49 & 4.50). One image showed

the child’s bags at the door, ready for him to take on overnight respite; the next showed

his bedroom, clean and tidied after being destroyed in an aggressive outbreak; a

symbol of a sense of restoration she feels through respite opportunities.

Figure 4.49. (P1). Child’s bags packed, at door, ready to take on overnight respite.

Figure 4.50. (P1). Child’s bedroom clean and restored after an aggressive incident. The photographs were a storied collection.

In other examples, Participant 2 evidenced moments of respite through a

photograph, annotated “a rare moment of stillness” (Figure 4.41) and also an image

of a hot drink and a book, described to be the first non-ASD book she has read in years.

The mother described how she “needs these moments” in recognition of their

importance to health.

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Figure 4.51. (P1). “Hot lemon & honey and a book. Ahhh... ”

Participant 3 photographed the view from the train window as she travelled into work

and annotated the image to be “her favourite part of the day” (Figure 4.44). She also

included a self-portrait taken at a social work function with the annotation: “my day

away from home at work” (Figure 4.45). Participant 4 illustrated her “freedom night”

with a photograph of a band and giggled as she relayed the evening enjoyed with a

friend (Figure 4.39). Participant 5 showed an image of her outside, smiling, breathing

the “fresh air” and appreciating how “lucky” she felt (Figure 4.41). Further,

Participant 5 shared how she “enjoyed the little me time that taking the photos and

reflecting on them provided me.”

All participants considered respite, in some form, to be pivotal to their overall

sense of wellness and an opportunity to retouch into the part of themselves that sits

beyond mothering and caregiving. These moments acted as a psychological circuit

breaker to the child-led responsibilities. In discussion of the photographs, the

semantics of their narratives highlighted the appreciation and positive re-orientation

that accompanies these moments. Using the photographic process in this way

heightened conscious contact with the experience of respite and created a positive

association to reflect back on. Continued photographing of these moments may help

develop continued reorientating back towards the positive, thus developing the

“attitudinal muscular” (Williams, 2017, p.167) mothers need to sustain wellness within

their long-term caregiving situations. The findings resonate with existing strengths-

based literature promoting the benefits of strategies which help maternal caregivers

identify, develop and return to positive inner qualities (Bitsika, et al., 2013; Gill &

Harris, 1991; Hastings & Brown, 2002; Phelps et al., 2009; 2009b).

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4.6.5 Innovative communication and relational tool

An interesting finding to emerge from the study was the way in which some mothers

used the photographic journaling process as an innovative communication and

relational tool. Although this may not have been the intended use at the outset, it was

an end result. This finding came to light in the narrative of Participant 1 (Figure 4.52):

I’ve got one there of [Child] when he is in the bus and he smiled. And it was the first time he ever smiled in a photograph! And as I was taking a lot of photos of him over the three-week period he began to start posing for me. He knew it was coming. So, it was terrific! I am going to keep going with it! (P1)

Here, the photographic process became a way of engaging the child and the camera

became a tool to facilitate communication and relations.

Figure 4.52. (P1). Child smiles at the camera for the first time ever. Image evidenced the use of photographic journaling as a communication and relational tool.

In another way, Participant 4 showed several self-portraits with her child and recalled

the positivity with the moments, including Figure 4.53. Although this may be ‘typical’

use of photography within families, used intentionally, photographic journaling may

present as a tool to help promote understanding, strengthen familial relations and

promote familial wellness. Given the literature pertaining to the vulnerabilities of

families and the need to focus interventions on building and fortifying relationships,

photographic journaling may offer benefit.

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Figure 4.53. (P3) Mother and son spent time together, playing with photographic images. Image evidenced the use of photographic journaling as a relational tool.

Section 4.6 unpacked findings related to the second research question – how do

mothers of child use photographic journaling as a reflective tool? The study confirmed

the power of photography to promote self-awareness and transform relationships with

self, others, and the world (Purcell, 2007). As a reflective practice, photographic

journaling facilitated voice, guided meaning making, acted as a hook for optimism and

resilience, and created a sense of psychological space within the all-encompassing

demands of caregiving. Literature pertaining to ASD caregivers and wellness cite these

intrinsic attributes and strategies to promote maternal wellness (Bayat, 2007; Hastings

& Brown, 2002; Ekas, et al., 2010; Kuhn & Carter, 2006; Lutz, et al., 2012; Rezendes

& Scarpa, 2011; Richely & Brown, 2007; Windle & Bennett, 2011). Reflective

practice also acted as an innovative communication and relational tool. In all of these

ways, photographic journaling contributes to feelings of wellness in mothers of

children with ASD.

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4.7 CHAPTER SUMMARY

This chapter discusses findings in relation to research questions one and two.

The centrality of the mother and the unique qualities of Visual Narrative methodology

provided new perspectives on the lived experiences of mothers of children with ASD.

The mother acted as a portal and showed how constant and complex child

health/behaviours influenced familial wellness and home; interactions external

systems; and maternal wellness and the nuances of child health/behaviour also shaped

the photographic journaling process. Importantly, this study attests to the reciprocity

between themes thus confirmed the maternal experience to be complex and dynamic.

The bi-directional relationship between the mother and child is paramount and,

although there was a leaning towards maternal vulnerabilities, mothers demonstrated

strength through their actions to mitigate stress and support their child, family, and

own wellness. The findings contribute to our appreciation of maternal caregivers to

enable the development of more congruent support strategies (Myers, e al., 2009;

Marshall & long, 2010). Chapter 6 will restate key findings and assert implications

and recommendations for policy and practice - and families.

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Chapter 5: Conclusions

5.1 INTRODUCTION

This visual narrative study explored the lived experiences of mothers of children

on the autism spectrum and the effectiveness of photographic journaling as a reflective

tool for this group. In doing so the findings contribute to current understandings of the

complexities of raising a child with ASD and the variability of maternal caregiver

experience. The value of these findings is embedded in an understanding of the socio-

political context surrounding ASD and caregiving; the increasing ASD diagnostic rate;

as well as an appreciation of the nature of ASD and the vulnerabilities associated with

this maternal caregiver group. Chapter 1 of this thesis presented this context and in

doing so crafted an argument for the need for innovative research approaches able to

capture the complexities associated with raising a child with autism and provide the

insights needed to create congruent, effective supports for families. Visual narrative

was presented as one such research approach.

In justification of the value of this research, Chapter 2 unpacked current literature

pertaining to both ASD and maternal caregiving. Raising a child with ASD was shown

to be complex and understanding of this lived experience was created through the

knowledge of the key vulnerabilities inherent in caregiving, as well as literature

pertaining to wellness. Strength based literature provided important insights into how

some mothers cope with the pervasive stressors of caring. Self-efficacy, resilience, and

meaning making strategies were shown to be pivotal in buffering mothers from these

persistent vulnerabilities. It was at this nexus of meaning making that arts-based

research demonstrated a valuable contribution.

The benefits of adopting Visual Narrative Inquiry were presented and Chapter 3

further justified use of this methodology. Chapter 3 began with framing literature

attesting the power of this visual approach and photography as a research and reflective

tool. This literature showed this first-person research method to offer the capacity

needed to capture the dynamic daily lives of participants and the complex human

dimensions associated with caregiving. Upon this argument, the research design was

presented, and analytic process described. Braun and Clarke’s (2006) Thematic

Analysis Framework afforded the study the necessary robustness required to produce

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findings of relevance and the rigor to potentialize policy change. Chapter 4 presented

the findings in detail.

This study consolidated well-founded notions within the ASD and caregiving

literature whilst the unique qualities of this inquiry provided new perspectives to

current understandings. Significantly, this study provides strength-based perspectives

on caregiving, and highlights the importance of family-centric policies. This chapter

summarises the key research findings (5.2) identifies implications (5.3) and

recommendations for policy, practice and carers (5.4) as well as limitations (5.5) and

future research directions (5.6). The chapter concludes by restating the power of the

mother’s voice and the value of participatory research methods in drawing these voices

from the periphery into the central realm of policy debate.

5.2 SUMMARY OF KEY FINDINGS

5.2.1 Contextualising contributions of the study

To appreciate the findings and implications of this study, this section begins by

recapping the socio-political context of the study before locating the findings within

this climate. ASD is a lifelong, complex, heterogeneous neurological disorder and the

experiences of those caring for a child with autism are also complex and multifaceted.

The drive to depict the lives of mothers caring for children with ASD was borne out

of my own experience as a mother of a child on the autism spectrum. From this very

personal place the study has grown to encompass a more significant, local, context in

which this issue sits. I have moved from seeing myself as simply ‘just a mother’ to

being introduced to the label ‘carer’, a term I still feel inherently uncomfortable with,

but a term I accept as it connects to the broader socio-political movement which

underpins caregiving. Across the world, governments, key agencies, and service

providers are recognising the vulnerabilities inherent in caregiving, including, and

particularly female caregivers (Baird, 2018). The motivation for governments to

address issues pertaining to caregiving is essentially prompted by a business case - the

economic risks and values of unpaid caregivers combined with projected increases in

reliance on (female) caregivers due to an ageing population and upward diagnostic

trends (ASD being one of them) (Baird, 2018; Carers Australia, 2015; Carers NSW,

2018). The annual value of unpaid caregiving in Australia is $60.3 billion, 3.8% of

Gross Domestic Product (GDP) (Carers Australia, 2015). Against these figures,

responsibilities of caregiving tax an individual’s health and capacity for workforce

engagement (Bourke-Taylor, et al., 2010; Bourke-Taylor, et al., 2012; Carers

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Australia, 2015). Within the sphere of ASD, the annual economic costs in Australia

are substantial, with one of the major costs identified as the loss of productivity within

the workplace due to caregiving & caregiver health (Buescher, et al., 2014; Carers

Australia, 2015; Roth, 2013).

Females in particular are at risk of physical and mental health issues as they

generally assume the role of primary caregiver and sacrifice their occupational and

leisure pursuits (Baird, 2018; Bourke-Taylor, et al., 2010; Bourke-Taylor, et al., 2012;

Hodgetts, et al., 2014; Lutz, et al., 2012; Ritz, et al., 2011; Savage & Bailey, 2004).

Mothers of children with ASD are at a heightened risk – three to five times more likely

to experience anxiety and depression, when compared to the general population

(Bitsika, et al., 2013; Savage & Bailey, 2004). ASD is not simply a personal or

individual issue, but rather represents a broader, societal issue with sweeping

economic, health, and social services costs that warrant more attention. In response,

policy makers and service providers are working to understand the caregiving

landscape and deliver more sustainable supports. There is a need for more reflective

solutions which consider the: (i) distinctive nature of ASD, (ii) symbiotic relationship

between child and mother, (iii) child within the familial system, (iv) strength

perspective, and importantly (v) harness the lived experiences of those affected by

ASD (Roth, 2013; Who, 2013).

Research contributes vital understandings to the field of maternal caregivers, yet

current literature is weighted towards the vulnerabilities associated with caregiving.

The bulk of the literature relies on quantitative methods to explore key stressors and

qualitative studies which facilitate insight into how maternal caregivers

meet/transcend the vulnerabilities inherent in caregiving are underrepresented. The

complexities, heterogeneity, and longevity associated with mothering a child with

ASD demand innovative and humanising methods (Clandinin, 2013; Levy, 2011;

Marshall & Long, 2009; Myers et al., 2009). Understanding this broader context lays

the foundation for appreciating the value of the Visual Narrative research design.

Visual Narrative combines the power of qualitative research with the power of

photography; yet is more than just simply adding a photograph to a research project.

More, this first-person research method places the camera in the hands of the

participant and their photographic data stimulates dialectic exchange between the

participant and researcher. This study attests to the benefits of the Visual Narrative

Design and its suitability to this sensitive participant group. Thematic analysis ensured

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systematic rigour and combed both photographic and narrative data sets at semiotic,

linguistic, and latent levels. As such, the findings provide fresh perspectives for

creating congruent policies and supports for transforming the ASD and caregivers

landscape. The following sections 5.1.2-5.1.5 outline findings in relation to the

research question,


5.2.2 Influencer theme: Child health/behaviour

Key finding: Constant and complex child health/behaviours have a ubiquitous

influence on the maternal experience.

Visual Narrative methods afford detailed insights into the lives of maternal

caregivers. Consistent with the literature, the lived experiences of mothers in this study

are complex, nebulous and variant (Bitsika, et al., 2013; Bromely, et al., 2004;

Dowling, et al., 2004; Gray 2002; Kuhn & Carter, 2006; Lutz, et al., 2012; Marshall

& Long, 2010; Markoulakis, et al., 2012; Pakenham, et al., 2003; Phelps, et al., 2009;

Phelps, et al., 2009b; Savage & Bailey, 2004; WHO, 2017). Further, mothers

evidenced duality in emotions (Dowling, et al., 2004; Markoulakis, et al., 2012;

Pakenham, 2003) and demonstrated they are at the effect of multiple compounding

stressors (Twoy, et al., 2006), as well as non-event and recurrent stressors unique to

autism (Marshall & Long, 20l1). The research was not focussed on the child but the

mother; yet, child health/behaviour dominated findings and permeated the maternal

experience to confirm the symbiotic relationship between child health/behaviour and

the mother and this is consistent with the literature (Bayat, 2007; Kuhn & Carter, 2006;

Lutz, et al., 2012; Savage & Bailey, 2004; Twoy, et al., 2006).

The study did not detail the actual health and behaviours triggering the stress, as

the assignment of stress to “complexity” and “constancy” of the health/behaviours

was more significant. Maternal participants in Hodgetts et al.’s study (2013 p.169)

also spoke of the “constant” and “cumulative exhaustion” associated with caring for a

child with ASD and participants in Kuhn and Carter’s study (2006) described how the

constancy of behaviours impacted maternal wellness, efficacy, and relationships.

These sentiments echo a number of other studies that have investigated parental

experiences of ASD (Hoogsteen & Woodstock, 2013; Lutz, et al., 2012; Marshall &

Long, 2010; Twoy, et al., 2006). Despite the pervasive challenges presented by ASD,

some mothers in this Visual Narrative study showed they are not entirely vulnerable,

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but rather tenacious in their attempts to understand the child, enact necessary supports,

and foster relations. Such findings contribute to existing strength-based literature (eg.

Markoulakis, et al., 2012 and Myers et al., 2012). In this study, the way in which child

health/behaviour influenced the maternal lived experience was analysed into three

central themes, reflective of literature determining child health/behaviour as the

significant predictor of dis-ease at individual carer, family, and social levels (Bitsika,

et al., 2013; Bromely, et al., 2004; Kuhn & Carter, 2006; Lutz, et al., 2012; Savage &

Bailey, 2004) and the findings reinforce the call for holistic, contextualised supports.

Central findings are now reviewed.

5.2.3 Central theme 1: Familial wellness and home

Key finding: Child health/behaviour radiates through the health, relationships,

and experiences of individual family members, as well as the family unit.

Consistent with the literature (Bayat, 2007; Lutz, et al., 2012; Marshall & Long,

2010) the visual narrative data affirms the centrality of the mother within the family

system. This participatory research placed the camera in the hands of the research

participant and in this way provided privileged access inside the walls of the family

home to present new perspectives on families living with ASD. Visual narrative data

contributed to current understandings of family wellness, including siblings, marital

relationships, as well as the ways in which families wove time together, adjusted

routines, and articulated visions for the future. Characterising this set of findings was

the notion of redefinition, as articulated by Participant 2 who spoke of how she needed

to “make room for disability” in her life. This recalibration was evident within the

semiotic and narrative data of all maternal participants, and particularly evident within

transformative language used within the narrative data. This contribution of narrative

inquiry was also noted by Krausz and Meszaros, (2005); Marshall and Long, (2010);

Myers, et al., (2009). The visual narrative data evidenced maternal focus on meeting

the needs of the child and balancing these needs within the health and dynamics of the

greater family system. Findings were revealed in regard to the impact of ASD on

siblings, marital relations, family functioning, as well as the home environment.

This study highlighted maternal concern for other children (siblings) in the

family and the sibling/child relationship was described in the findings as both “loving”

(P2,P3,P5) as well as “painful” (P1, P2) and “stressful” (P3,P4,P5). The nature of

ASD was seen to compromise the health of siblings, thus aligned with literature by

Ferraoili and Harris, (2010), Gorjy, (2017), McHale et al., (2012), Orsmond and

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Seltzer, (2009), and Phelps, et al., (2009). The mothers in this study included

photographs of their other children and then elaborated within the interviews the

impact ASD was having on the physical, mental, emotional health, and social aspects,

of these children’s lives. This stress was found to overflow onto the mother and her

visual narrative data revealed her concern for the wellbeing of other children and

evidenced the strategies mothers used to support them which aligned with research by

Seltzer, et al., (2007). Further, the findings from this research reflected a number of

other studies that demonstrate the impact ASD can have on the whole family system

(for example, Bitsika, et al., 2013; Hastings & Brown, 2002; Hodgetts, et al., 2015;

Phelps, et al., 2009). The findings from this study fortify the call for supports to

embrace the familial context and not remain isolated around the child.

Raising a child with ASD impacts on the entire family system, and at the centre

is the couple’s relationship (Sims et al., 2017). The stresses related to parenting a child

with ASD can undermine relational communication and erode the health and energetic

capacity of individuals to invest in the relationship (Sim et al., 2017). The bulk of the

literature stops here, focusing on marital distress, conflict, dissatisfaction and

breakdown, yet the narratives within this study revealed the inter-parent relationship

to be valued and supportive. Although partners did not feature in any photographic

data, the narrative data (through “we” references) provided evidence of how the

couples related and coped with the challenges of parenting a child with autism.

Mothers reported dyadic coping, shared responsibility for caregiving, commitments to

the child, family unit, and each other, and Participant 2 shared she felt her relationship

with her husband had “deepened” as a result of the challenges they faced in raising

their child with ASD. The findings correlate with literature informing a strength

perspective (Benson & Kersh, 2011; Harper, et al., 2013; Hartley et al., 2011;

Marciano, et al. 2015; Markoulakis, et al., 2012; Myers, et al., 2009; Phelps, et al.,

2009) as well as with Sim et al., (2017) who attests to the value of these strength-based

findings.

Conclusions from the Sim et al. (2017) study examining inter-parent relations

within families caring for a child with ASD, highlighted: “couples who demonstrate

resilience and strength are a valued resource and qualitative exploration of how they

maintain relationship satisfaction and cope together to manage stress would provide

invaluable information to the field” (p.3567). This strength-based perspective

promotes the benefit of strategies to fortify inter-parent relationships and help couples

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positively adapt with Sims et al., further suggesting that such an approach can

“promote family resilience and prepare the critical foundations for long-term

therapeutic caregiving” (p.3569). The findings from Sim’s study add valuably to the

argument asserted by this Visual Narrative research in that familial-based supports are

essential to successful outcomes for children with ASD and those who care for them.

According to mothers in this study, ASD also influenced familial dynamics and

functioning. This finding resonates with other literature by Bourke-Taylor, et al.,

(2010); Marshall and Long, (2010); Seltzer, et al., (2007) who also suggest that

families living with ASD function differently and need to recalibrate to accommodate

the needs of the child. The photographic data from the mothers acted as a springboard

into narrative discussion and revealed how family time, although valued, was skewed

to accommodate the needs of the child. Further, narratives revealed how mothers

needed to adjustment to family routines as well as long-term vision for the family’s

future. Within this process of redefinition, mothers spoke of needing to let go of their

traditional, childhood and societal infused notions of how family life should look and

instead weave a family life that honoured their own version of familial wellness. The

personalised language of the narrative revealed this to be a transformative process that

unfolded over time. This linguistic benefit of qualitative research methods is also

noted by other researchers using narrative inquiry methods to better understand

parental experiences (Krausz & Meszaros, 2005; Marshall & Long, 2010; Myers, et

al., 2009).

The data from this study illustrated the influence of ASD on the home

environment. Photographs and narratives showed the home to be both a place of

tension and a place of therapeutic support. The physical home environment was

modified to accommodate disability and micro—modifications were aimed at creating

spaces needed to support all family members. These findings thus correlated with

research by Nagib and Williams (2018). Further, participants gave insights into how

the social aspects of home shifted due to the challenges presented by ASD. Participant

1 evidenced reliance on support workers to assist with care needs and spoke of the

isolation and restricted living she experienced due to the child’s health/behaviour

needs. Participant 2 spoke of the “outside world” and described how family and

friends were no longer invited into the home. Similarly, previous studies by Gray

(2002); Higgins, et al., (2015); Hoogsteen and Woodgate, (2013), revealed the nature

of ASD led families to restrict social contact to result in maternal feelings of isolation.

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The maternal lived experiences provide a window into the complex, multitude

of ways in which ASD impacts the lives of families. Importantly, these findings

presented in relation to Central Theme 1 show the child to be an integral and

influencing part of the family system and such findings begin to build the argument

for family-centric policies and supports. Stretching beyond the home and family

sphere, child health/behaviour also permeated maternal experiences within systems.

5.2.4 Central theme 2: Maternal experiences with external systems

Key finding: Child health/behaviours influenced maternal interactions within

external systems of education, health care, and the community. Perceived

understanding is essential to establishing positive system relations.

Disconnection between systems and the family created short- and long-term

vulnerabilities for the child, mother, and entire family unit.

The maternal data sets showed a varied range of maternal experiences regarding

education, healthcare systems/NDIS, and the community. Mothers identified that

discontent arose from external systems not understanding the nature of ASD; the needs

of their child; the needs of the mother as a caregiver; and/or the family context. These

findings align with earlier studies associating familial vulnerabilities with difficulty

engaging, mobilising, and finding congruence with educational and health supports –

as well as the need to continually advocate for the child within those systems (Banach

et al., 2010; Gray & Holden, 1992; Hodgetts, et al., 2014; Marshall & Long, 2010;

Sanders & Morgan, 1997; Twoy, et al., 2006). However, little is currently known about

the influences these systems have on the wellness mothers of children with ASD

(Hodgetts, et al., 2017). Significantly, this study found that a disconnection with

external systems impacted not just the child, and not just the mother, but the entire

family unit. A study by Hodgetts et al., (2015) suggests that the increasing rate of ASD,

thus increasing demand on ASD services, is straining external systems but “tailoring

services to best meet families’ needs could improve their quality of life and decrease

burden on the system” (p. 673).

In reference to education, three of the five mothers shared they felt “supported”

and thus “happy” with their child’s educational institution, however, two of the

mothers experienced significant disconnect with the education system. One mother

reported that, despite best efforts, she felt unable to bridge the divide between the

schooling system and the needs of her child and family, with the governing bodies of

one school refusing to even meet with the mother. Discontinuity was found to present

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both immediate and long-term maternal health risks and impacted the health of

siblings. Further, mothers noted restricted occupational engagement, financial return,

and future job security. These narrative data aligned with research by Banach et al.,

(2010) and Hodgetts, et al., (2015). Photographic and narrative evidence showed

interruptions to the child’s schooling have short- and long-term impacts on the child,

according to the mothers. Given education is the major factor affecting social

outcomes in adulthood, adequate provision and access to education influences future

employment and social and economic participation - including social and economic

independence from the family (Levy, 2011). The realities of long-term sustained care

of individuals across their life span into adulthood, further compounds maternal and

familial vulnerabilities associated with caregiving (Hodgetts, et al., 2015).

The second central theme also presented findings showing the maternal

experience in relation to the external health care system/NDIS. Again, the mothers’

visual narrative data revealed the impact of discontinuity on her lived experience. Such

findings are significant given the recent shifts within disability funding in Australia.

Participant 1 shared that the NDIS was solving problems for her child and the family

and a number of her photographs also captured positive relations between the child

and support workers. These data attest to the benefit supported respite offers to both

her and her other children. However, equal in this data is her desperate need for more

respite, including overnight respite which is currently limited due to service facilities

in her area. This mother (and the other mothers within this study who flagged lack of

respite as a significant issue) showed they experienced heightened stress and

deteriorated levels of physical, mental, and emotional health due to the constant and

exhaustive demands of caregiving. Literature within the caregiving field attests to the

heighted risks mothers of children with ASD face, when compared to both the general

population and mothers of children with other disabilities. The need for respite is

considered essential to sustain the health (Bourke-Taylor, et al., 2010) and longevity

of carers (Carers Australia, 2015; Harper et al., 2013). A recommendation in Hodgetts

et al., (2015) asserts “streamlining respite care processes could have substantial

positive impact on parents’ well-being and quality of life” (p. 680). Further, an article

by Hughes (2017) asserted the NDIS needed to consider the needs of family caregivers

if it wished to remain viable. This was clearly attested to by participants in this study.

Four of five mothers used their visual narratives to express their frustrations

with the NDIS and the interview process invited a deeper understanding as to the cause

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of such feelings. Mothers shared they felt their needs were misunderstood and

disregarded by the NDIA and rigidity within the Scheme’s bureaucratic processes

further exacerbated feelings of frustration and discontinuity. The narrative data

revealed the impact of this discontinuity on maternal health and, for one mother, her

capacity to work. Mothers reported they felt unheard by the NDIA in regard to these

impacts. Further, the visual narrative data communicated how the bureaucratic process

of the NDIS created time pressures and stress for participants, overshadowed their

ability to implement supports for their child, and hindered their ability to navigate the

system effectively. One mother used her visual data to highlight the significant issues

she faced in accessing services to support her children. Her narrative attested the

impact that limited service availability was having on her stress-levels and her concern

for her children not receiving the care they needed. She spoke of subsequent advocacy

efforts to Members of Parliament.

According to the participating mothers, advocacy was not based on creating a

further rift between the mother and the external system but rather on trying to create

more understanding to enable effective relations and supports for their child. The

findings within central theme two reveal that it is through understanding that

discontinuity can be bridged to create better supports for families and this is supported

within the literature, for example Bourke-Taylor, et al., (2010) and Hodgetts, et al.,

(2013; 2014; 2015; 2017). The mother in this study held a pivotal role within this

family system and whilst the research asserts the need for supports to consider familial

contexts, the findings also demonstrate a need to consider the needs of the mother,

both as part of this, and in addition to, this family system.

5.2.5 Central theme 3: Maternal wellness

Key finding: Mothers in this study described experiencing diminished levels of

physical, mental, and emotional health yet reorientated towards wellness by

using a variety of intrinsic and external coping strategies.

The vulnerabilities inherent in caregiving are well substantiated in the literature

(for example, Bourke-Taylor, et al., 2010; Carers Australia, 2015; Savage & Bailey,

2004) and both photographic and narrative data revealed the significantly deteriorated

level of wellness mothers in this study experienced. The notion of “juggling” was

common across the findings, with all five participants evidencing the link between the

multiple, cumulative, demands of caregiving to feelings of stress and exhaustion. The

mothers spoke about how feelings of vulnerability and deteriorated physical, mental,

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and emotional health reduced their capacity to engage with other aspects of their lives.

These findings correlate with other studies by Bourke-Taylor, et al., (2010); Bourke-

Taylor, et al., (2011); McGuire, et al., (2004); Ritz, et al., (2010); Savage and Bailey,

(2004). Lack of sleep exacerbated health and engagement levels, a finding similar to

previous research by Giallo, et al., (2011), Hodge, et al., (2012) and Meltzer, (2011).

Against these vulnerabilities, and in recognition of the importance of their health,

mothers used a number of wellness strategies. These strategies were evidenced both

visually and narratively.

Given the vulnerabilities of this population, and the lifespan requirements of

caregiving, it is important to understand how and why mothers cope with the stressors

associated with raising a child with ASD (Myers, et al., 2010). The unique properties

of the data collected in this study unveiled the practical, emotional, cognitive and

social ecological coping strategies mothers relied on to navigate the persistent

challenges associated with ASD. In regard to external practical supports, mothers took

a number of photographs depicting respite opportunities. Photographic data captured

small, opportune windows of respite, as well as social events, and formal respite

arrangements and narrative data revealed the importance of respite to them. The

interviews uncovered that respite was an opportunity to reorientate towards wellness

as well as an opportunity to relocate a part of themselves separate from mothering and

caregiving. For one mother formalised respite meant important time with her other

children. The importance of respite is evident across the literature, including, Bourke-

Taylor, et al., (2010); Hodgetts, et al., (2015); and Savage and Bailey, (2004).

Further, visual narrative data made visible the cognitive strategies and internal

attributes that mothers relied on to cope. Mothers used photography as a reframing tool

to generate wellness. Reflection on the images during the interviews enhanced their

meaning making process and their language revealed evidence of optimism, resilience,

self-efficacy, and acceptance. All of these are identified within the literature as key

contributors to overall psychological wellbeing in mothers caring for children with

ASD (Bayat, 2007; Bayat & Schutermann, 2013; Ekas, et al., 2016; El-Ghorough, et

al., 2012; Hastings & Brown, 2002; Kuhn & Carter, 2006; Marshall & Long, 2010;

Rezendes and Scarpa, 2011; Phelps, 2009b; Whitehead, et al., 2015). Importantly, the

data mirrored findings by Gill and Harris (1991) which found intrinsic support to be

more reliable than external social supports and showed social supports to be valuable

if they were congruent and accepting of ASD and the mother’s caring roles. Thus,

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these findings suggest further investigation into strategies aimed to help mothers

locate, expand, and generate the internal resources needed to sustain, long-term

caregiving demands is warranted. This assertion is reflective of literature by Ekas et

al. (2016); Levy, (2011); and Rose et al. (2011)

Work engagement also bolstered maternal health and offered mothers a sense

of fulfilment beyond mothering and caregiving. However, aligning with literature by

Bourke-Taylor, et al., (2011); McGuire, et al., (2004); Ritz, et al., (2010); and Savage

and Bailey, (2004), the relationship between occupational engagement and maternal

health was not straightforward. The visual narratives expressed the many ways in

which work added into the sense of juggle and cumulative feelings of exhaustion and

a more comprehensive understanding of these tensions were afforded through the

interview process. Mothers discussed the social, health, and financial benefits of

working, as well as insights into the barriers which capped their capacity to work; those

being care requirements, alternative suitable child care arrangements, and their own

depleted levels of health. Discussion highlighted workplace attributes which promote,

or inhibit, engagement. Participants also narrated how the bureaucratic policies and

processes of the Education and health care systems (NDIS) significantly interrupted

their capacity to engage with work. These findings make a valuable contribution to

the current, changing, caregiver and work policy discussions.

Researchers, such as Baird (2018), McLintock (2018) and Williams (2018) and

peak Australian caregiver bodies, such as Carers Australia (2015) and Carers NSW

(2018), agree that work provides carers with social, economic and health benefits yet

often caregiving obligation create barriers to participation. Both researchers and peak

bodies also cite the economic value of unpaid caring to the broader economy (Baird,

2018; Carers Australia, 2015; Carers NSW, 2018; McLintock, 2018; Williams, 2018).

As such there is concerted effort to create innovative solutions to increase caregiver

participation in the workplace (Baird, 2018; Carers Australia, 2015; Carers NSW,

2018; McLintock, 2018; Williams, 2018). Further, the findings from this study also

contribute to discussion pertaining to the economic sustainability of the NDIS. Whilst

the Scheme is currently solely focussed on supporting the person with a disability this

research argues that supporting caregivers with needed respite solutions would enable

greater workplace participation and, in this way, contribute to the economic viability

of the Scheme.

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Findings pertaining to maternal wellness also revealed how maternal outlooks

were shaped by the experience of raising a child with ASD. The photographic data

facilitated rich narrative exchanges in which some mothers revealed autism to be a gift

to their lives and another shared the inherent burden she felt has come from their

caregiving experience. Participant 5 shared, “autism has not made me a better person”

yet also indicated she was “doing the best” she could with what she was given and felt

“grateful” and “privileged to be a mother.” The variability and complexity of

emotions expressed within these narratives aligns with other qualitative studies

examining caregiver experiences of autism, for example, Lutz, et al., (2012); Marshall

& Long, (2010); Phelps, et al., (2009); Packenham, et al., (2003). Similarly, Dowling,

et al., (2004) and Phelps et al., (2009b) also described the co-existence of varying

emotions and Markoulakis, et al.’s (2012) study involving mothers of children on the

spectrum found that whilst mothers shared the burdens associated with caregiving they

also revealed positive aspects to their experiences. Without underplaying the grief,

overwhelm and complexity that accompanied each maternal story, mothers in this

study provided visual and narrative evidence of their capacity to reframe and make

meaning of their situation. The findings from this study shine a light on the varied

experience of raising a child with ASD and all stories could/should contribute to the

creation of effective and congruent supports.

Thus, the visual narrative data reflected the nuances and variability of the lived

experiences of mothers of children with ASD. The participatory nature of the 3-week

research design and the portability and convenience of the camera as a research

instrument enabled mothers to capture the daily moments and events which coloured

their lives. As an art-based practice, photography enabled mothers to symbolically or

literally express their feelings and experiences, unbound by the restraints of language.

This attests to the value of photography in research advocated by founding contributors

to visual research, Wang and Burrris (1997). Further, the photographs furnished

narrative discussion to enable a rich dialogue flow, thus aligning with notations by

other visual researchers such as Bach (2001; 2007). This study also collated a rich

array of maternal stories to present findings of value in response to research question

one and in doing so contribute to our current understandings of ASD and appreciation

of caregiving. The study also considered the ways in which mothers used photographic

journaling to locate strength in their lived experience and generate feelings of wellness,

and these findings are presented in response to research question two: How do mothers

of children with ASD use photographic journaling as a reflective tool?

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5.2.6 Key findings in response to research question 2

Mothers in this study used photographic journaling in five different ways, all

of which promoted opportunities for maternal wellness. All mothers shared in

their interview that they found the photographic process to be beneficial with

some indicating that they would like to continue on with this type of reflection.

The first way in which mothers used the process was as a platform for

storytelling. Their narrative data revealed the intentionality behind the framing of

images and with the choice of subject matter reflecting an issue they wished to/were

advocating for. Further, the language used within the narrative data referred to their

intention to communicate the issues to an external audience. In this way, the

photographic process afforded a mother a voice and thus mirrored formative visual

methods research by Wang and Burns (1997) and other studies using visual methods

within the sphere of disability, for example Ha and Whittiker (2016) and Walton, et

al., (2012). Similarly, this study promotes the benefits of storytelling to maternal

participants.

Secondly, mothers showed they used the photographic process as an internal

meaning making tool. The practice of photographic journaling appeared to draw

mothers into contact with the immediacy of their situation to enable assessment and

change, thus aligning with literature pertaining to notions of reflective transformation

(Clara, 2015; York-Barr & Sommers, 2001). Mothers made meaning in the first

instance of taking the photograph, as indicated through the semantics of photographic

captions. The act of narrating within the interview then offered a further opportunity

for reflection, again evidenced at the linguistic level. Finally, photographs acted as a

hook to invite added reflection, as detailed below. The photographic process made

visible maternal meaning making and subsequent recalibration towards wellness and

the benefits of meaning making are founded in the literature examining key coping

strategies for this group, (Bayat, 2007; Bayat & Schuntermann, 2013; Hastings &

Brown, 2002; Kuhn & Carter, 2006). In this way, photographic journaling may be a

tool which could contribute to maternal wellness and given the inherent vulnerabilities

associated with maternal caregiving, further exploration into the effect of photographic

journaling to wellness is warranted.

Thirdly, mothers used the process to take happy and memorable photographs,

a simple yet profound way mothers created positive hooks to retrieve feelings of

optimism and resilience from under their ASD caregiving responsibilities. Again, the

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literature attests to the benefits of strategies to reframe and orientate towards positive

internal attributes and feelings (Bayat, 2007; Ekas, et al., 2010; Hastings & Brown,

2002; Kuhn & Carter, 2006; Lutz, et al., 2012; Myers, et al., 2009). Similarly, mothers

captured moments of respite, and in this way the process was seen to heighten

conscious contact with the experiential benefits of respite to create a positive

association. Reflective literature discusses the necessity of deliberate pause and

creation of psychological space in order to invoke transformation and change (Clara,

2015; York-Barr & Sommers, 2001). Given the pervasive challenges inherent in

caring for a child with ASD, these findings contribute further to wellness literature

(Bitsika, et al., 2013; Bayat, 2007; Bayat & Schuntermann, 2013; Gill & Harris, 1991;

Hastings & Brown, 2002; Kuhn & Carter, 2006; Phelps et al., 2009; 2009b).

Lastly, the photographic process was used as an innovative tool to foster

communication and relations between the mothers and their children. Literature attests

to the benefit of strengthening family relations to fortify the family system against the

inherent challenges ASD presents (Bayat & Schuntermann, 2013; Hodgetts, et al.,

2015; Sim et al., 2017; Walsh, 1998, 2010). Literature on family resilience highlights

the importance of families together engaging in meaning making activities to develop

their own narrative (Bayat & Schuntermann, 2013; Myers, et al., 2010). This research

considers whether photographic journaling may act as a tool to draw family members

together to promote positive relations.

Thus, the findings in response to research question two found mothers used the

photographic process in five different ways, all of which can be seen to contribute to

maternal wellness through the opportunity for meaning making. Given the stressors

related to ASD and the sustained longevity of care demands, it is essential that research

better understands the ways in which mothers reorientate towards wellness. Further,

intrinsic support mechanisms are deemed more effective than external social supports

thus focus on development of strategies to identify and harness internal attributes are

paramount. In short, photographic journaling is a tool to meet this end and further

research to understand its effectiveness is warranted. Findings in response to both

research question one and two contribute to our understanding of the nature of ASD

and appreciation of maternal caregivers to enable the development of more congruent

support strategies. Section 5.3 will highlight implications of these findings for policy

and practice. Section 5.4 presents key recommendations emanating from this study.

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5.3 IMPLICATIONS

The maternal experience has been found to be multifaceted and variant with

complex child health/behaviour influencing family life; interactions with external

systems; and experiences of maternal wellness. A set of implications and

recommendations are presented here for the mother, child, and family, at levels of both

policy and practice. Broader policy implications will first be discussed (5.2.1); before

identifying implications for practice (5.2.2); and implications for maternal caregivers

(5.2.3). In response to the implications, section 5.3. will unpack key recommendations

stemming from this research.

5.3.1 Policy implications

Significantly, this study contributes maternal voices to the ASD and caregiving

policy. Harnessing the lived experiences of those caring for individuals with ASD is

recommended by governments and policy makers, both in Australia and

internationally (WHO, 2013; Roth, 2013). An Australian Parliamentary Paper (Roth,

2013) called for more localised and personalised information to help close the gaps in

current support structures for families affected by ASD and this need is reflected

within more current literature. Hodgetts et al, (2017, p43), for example, cites better

understanding maternal caregivers as “crucial to improving” need care services and

systems.

A significant change within the caregiver policy landscape has been the National

Disability Insurance Scheme which has shifted supports away from carers to localise

around the recipient. This study revealed the transition of families onto the NDIS

received varying reports as to the impact it is making to the lives of carers and the

recipients of the scheme. Whilst some participants felt the scheme was making a

positive impact, discontinuity was found to exacerbate caregiver health vulnerabilities

and interfere with work efforts. Caregiver health costs and caregiver productivity costs

are reported as the two largest cost components to governments (Baird, 2018; Buesher,

et al., 2014; Carers Australia, 2015; Roth, 2013). Compounding this, ASD is a life-

long developmental disorder which requires a lifespan perspective, thus ensuring these

costs are ongoing (Levy, 2011). Given the long-term sustainability of the NDIS relies

on economic viability, (re)consideration of the value of caregivers and the creation of

more reflective policies is warranted (Forster, 2016; Hughes, 2017).

Whilst Legislative Acts, such as the 2010 Carers NSW Charter, formalise

recognition of caregivers and create obligations for agencies to include and support

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carers, the potential for real change rests with sustained action from governments to

ensure legislation is implemented (Carers NSW, 2018). However, such Acts pave the

way in creating more congruent policy and supports and provide traction for research

which harnesses the lived experiences of carers. The unique properties of the Visual

Narrative study have provided nuanced insights into the lives of mothers caring for a

child with ASD. The privileged access inside the walls of the family home reveals

impacts of ASD on the health and relationships of other family members. Moreover,

the study made visible the cognitive strategies mothers used to reorientate towards

wellness in the face of the pervasive challenges ASD presents. The findings are clear

– child health/behaviour significantly impacts mothers and families. Whilst

governments and policy makers may esteem family centred approaches, the current

policy landscape shows this to be otherwise and current literature attests to this.

Policies cannot dislocate the child from the family system. Rather, effective, long term

and sustainable solutions require a holistic and contextual approach.

5.3.2 Practice Implications

The findings of this study have important implications for practice, providing

nuanced insights into the lived experience of mothers of children on the AS. The bulk

of literature on ASD and caregivers has used quantitative methods, yet, as promoted

by Bach (2007), the Visual Narrative method used in this study captures the daily

experiences of caring and the range of human emotions which colour this experience.

The centrality of the mother opened the doors to the family home to show the lives of

those directly involved in caring for the child with ASD. In this way, practitioners

working to support individuals and the child with ASD are afforded a holistic view

and the detail required to begin to create more congruent supports. Research ascribes

best ASD practice to involve the child’s family working intensely with health

professionals (APA, 2013; Cantiano & Bozzi, 2015; CDC, 2016; Dawson et al., 2010;

Ospina, et al., 2008 White, et al., 2009). Extending on this family-centred approach,

best practice recommends consideration of the familial context (Hoogsteen, et al.,

2013). However, this study evidenced discontinuity based on a lack of understanding

of the child or family situation. This implies that practitioners and care systems must

do more to understand the family, contextualise necessary supports, and demonstrate

greater awareness of the complexities caregiving places on families. Further, Bourke-

Taylor (2010 and Hodgetts, et al., (2013, 2017) state that successful implementation

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of therapy is dependent on maternal coping and this suggests the importance of the

mother being supported both as part of, and in addition to, the familial system.

This study clearly evidenced that mothers of children with ASD are vulnerable

to physical, mental, and emotional health risks due to the pervasive challenges of

raising a child with ASD. However, mothers showed agency in their efforts to navigate

these challenges. Scholars such as Myers et al., (2010) assert that it is not enough to

know that vulnerabilities exist. It is more important to know how and why some

mothers orientate towards wellness. Further research is endeavouring to understand

the personality traits and cognitive processes mothers of children on the spectrum use

to adapt to the complexities of caregiving (Bayat, 2007; Hasting & Brown, 2002; Kuhn

& Carter 2006; Rezendes & Scarpa, 2011; Phelps, et al., 2009b). This research was

able to make visible the personal attributes and cognitive coping strategies mothers

relied on. Findings from this study are therefore valuable to practitioners working to

support mothers of children with ASD, and their children.

The visual narrative data identified stressors felt by mothers and the strategies

they used to mitigate these stressors. Mothers valued the practical strategies of

achieving sleep and respite. They also relied on meaning making to reframe the

challenges of ASD, generate feelings of self-efficacy (Hasting & Brown, 2002; Kuhn

& Carter 2006; Rezendes & Scarpa, 2011) and resilience (Bayat, 2007; Bayat &

Schuntermann, 2013; Bitsika, et al., 2013) and relocate dispositional optimism (Ekas,

et al., 2010; Willis, et al., 2016) which are key promoters of maternal wellness.

Mothers in this study articulated that they found intrinsic resources to be more reliable

than external social supports, findings which align with research by Ritz, (2010). It is

important for those practitioners working with maternal caregivers to help them locate

their strengths, identify unmet needs, and reorientate towards wellness. The reflective

practice of photographic journaling is shown to be a tool of benefit. This visual tool

may not only afford the mother an opportunity to reflect and transform areas of her life

but also provides practitioners working with the mother a more intimate understanding

of the particular nuances that shape that mothers’ cognitive, emotional, and physical

landscapes. In addition to providing maternal caregivers with strength-based, holistic

supports, it is necessary for these supports to be ongoing to reflect the change in care

requirements as the child grows and develops and to help sustain mothers throughout

the caregiving journey (Levy, 2011; Rose, et al., 2016).

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The findings from this study also showed how familial wellness and the home

were influenced by child health/behaviour. The study revealed vulnerabilities at the

familial level, for example the impact of ASD on the health of siblings. Yet, evidence

of familial resilience existed. According to the participants, the health of other children

(siblings) was impacted by ASD, and relationships between children and their siblings

were described as both “loving” and “painful”. Mothers in this study expressed

concern for the wellbeing of other children and were conscious of trying to balance the

needs of the child with ASD with the needs of their siblings. In supporting mothers

and /or families, it is important to recognise that the health of the other children also

overflows onto parents. Mothers in this study valued quality time with these other

children (without the child) as well as time together as a family, yet this time was often

fractured by the needs of the child with ASD. Providing strategies to ensure mothers

and families are able to achieve time together would help to strengthen familial

relations and provide the resilience needed to sustain the long-term challenges of ASD.

Research by Tsao et al., (2012) shows that siblings are best supported within the

context of the family and thus supports to strengthen the family unit help siblings to

cope with the challenges of growing up in a family with ASD. Meaning making is

considered critical in shifting the balance from vulnerability to reliance and guiding

families to work together through this process is cited as best practice (Bayat &

Schuntermann, 2013)

Similar approaches are required when working with inter-parent relationships.

This study also showed the marital relationship to be one of support to mothers, with

some mothers evidencing a deepening in their relationship due to the challenges of

ASD. Whilst the bulk of literature pertaining to ASD emphasises the distress placed

on marriages, this study revealed that couples were able to experience relational

satisfaction and mothers yielded wellness from the support of their husbands or

partners. It is therefore necessary to focus strategies to help couples reorientate to the

strengths within their relationships and to encourage communicative and shared

responsibilities. The findings from this study resonate with Sims et al., (2017) who

found dyadic coping to have brought couples closer together, strengthening

relationships, and helping them to positively adapt to the inherent challenges of raising

a child with ASD. Family centred approaches to supporting children with ASD are

considered best practice (Hodgetts, et al., 2013; Sims et al., 2017) however, effective

supports need to consider the marital relationship as the nucleus (Sims, et al.,2017).

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Thus, if we are to truly support children with ASD, it is imperative that the family and

the relationships within that family be considered and supported.

5.3.3 Implications for carers

The following commentary from keynote presentation on sustainable caregiving

by Professor Sue Yeandle at the 2017 International Carers Conference, frames the

implications of this Visual Narrative research for carers:

Sharing of our knowledge, ideas and concerns, has the power to affect both what we do on the small stage of our own everyday lives, and to change and improve the bigger picture – the structures and institutions and practices and policies which shape not only how care is organised, but also how it feels to

give or to receive care, and the material, social and relational circumstances in which care occurs (Yeandle, 2017)

The participatory nature of this research has afforded first-hand accounts of how

lives are shaped through the demands of caring for a child with ASD. Their maternal

experiences in this study contribute to the development of congruent policy and

practice to provide more effective supports for carers and their families. Further, the

maternal stories provide what Kuhn and Carter (2006, p.571) describe as a “normative

framework”, that is, they promote a sense of commonality with other mothers in

similar caregiving roles and Kuhn and Carter describe the benefits of resonant, shared

experiences to maternal wellness. Further, the positive stories uncovered in this project

offer hope for other mothers raising children on the autism spectrum and act as beacons

of inspiration and strength (Kuhn & Carter, 2006). Existing literature attests to the

benefits of positive stories in buffering mothers against potential vulnerabilities

(Biksika et al., 2013; Gil & Harris, 1991; Hastings & Brown, 2002; Phelps, et al., 2009;

Phelps, et al., 2009b).

This study invited the mothers to express their experiences through photographic

journaling. This reflective tool was found to help mothers in this study reframe their

challenges and locate the inner qualities necessary to reorientate towards wellness. The

literature attests to the importance of strategies which help carers identify and expand

the internal resources necessary to sustain the caregiving journey (Bayat, 2007;

Hastings & Brown, 2002; Kuhn & Carter, 2006; Rezendes & Scarpa, 2011; Phelps, et

al., 2009b). Further, the photographic process also gave the mothers voice and in doing

so may have contributed to feelings of agency and self-efficacy (Wang & Burris,

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1997). Given the policy, practice, and personal caregiver implications of this project,

further research combining Visual Narrative with this group is warranted.

5.4 SUMMARY OF KEY RECOMMENDATIONS

In summary, key recommendations from the research are as follows:

(1) A holistic, complex, view of the child must be adopted.

This research recommends a holistic view of the child with ASD be adopted and

policies and supports must consider the way in which ASD impacts not just the child,

but the all systems in which that child lives, plays and learns (Bayat, 2007; Lutz et al.,

2012). The visual narrative data generated from this study clearly shows the child

incorporated within the family system; the education and health care systems; and the

community and the pervasive influence of child health//behaviours on the maternal

lived experience. The data showed the complexity and compounding nature of this

influence with a host of interacting stressors influencing the maternal lived experience.

This notion of stressor ‘pile up’ is also noted in formative literature on coping by

researchers such as Cohen and Lazarus (1979) and within literature pertaining to ASD.

Marshall and Long (2010) assert the interdependence and intricacy of stressors

associated with caregiving. Thus, this study recommends a holistic perspective of the

child. The child cannot be view in isolation, or merely even viewed against a backdrop

of ‘family’, ‘school’, ‘health’, or ‘community’. Rather, the child needs to be located

within these overlapping systems. Effective policy and support must consider the

complexities inherent in ASD and caregiving to ensure systems and supports work

together to achieve best outcomes.

(2) Family-centric and strength-based policies and supports are necessary.

Given the mutual influence between the child and family, and the tendency of this

influence to present vulnerabilities to families, this study recommends supports

consider the familial context and be geared towards helping families identify strategies

to cope and expand existing support strategies. Aligning with existing strengths-based

literature this study asserts the importance of creating strategies to strengthen families

against the vulnerabilities inherent in raising a child with ASD and promote positive

familial connections (Bayat, 2007; Bayat, & Schuntermann, 2013; Biksika, et al.,

2013; Hodgetts, et al., 2015; Kuhn & Carter, 2006; Lutz, et al., 2012; Marshall & Long,

2010; Sim et al., 2017; Ungar, 2015; Walsh, 1998, 2010).

172

Given the multiple stressors faced by families, and variances characterising family

systems, it is important for practitioners to adopt a multi-pronged approach tailored to

specific contexts. Strategies must look to strengthen families’ relations and promote

familial resilience against the vulnerabilities inherent in raising a child with ASD.

Photographic journaling was found to offer mothers in this study an opportunity to

make meaning of their experiences, locate strengths, and reorientate towards wellness.

This reflective tool might also hold benefits at familial level. More, the photographs

generated would offer the practitioner insights into the nuances that colour the

families’ life and, in this way, enable more congruent and effective supports to be

offered.

(3) The mother must be considered within, and in addition to, the family

system and be supported from a strength perspective.

Given the inherent vulnerabilities associated with maternal caregivers and the

mother’s pivotal role within the family, it is essential that her health is fortified.

Practitioners should work with mothers in the context of the family system and also

work to address issues pertaining to her own experience. The findings in this study

show photograph journaling contributes to meaning making and wellness and also

shows that internal resources are more reliant than external supports. In this way

practitioners could consider using photographic journaling as a way to help other

mothers harness internal strengths needed to meet the persistent challenges they face

in raising their child with ASD. More, the photographs generated would enable

practitioners to understand the complexities within the mother’s life and inform the

offering of more congruent supports.

This study stows the varied experiences of mothers and the ability for mothers to

reorientate towards wellness. It is important that practitioners remain open to the

breadth of maternal experiences and support mothers from a strength perspective.

(4) A life-span perspective requiring ongoing review of policies and practices

to support children with ASD, and their families, is imperative.

ASD is a life-long developmental disorder (APA, 2013; WHO, 2017) and mirroring

the lifespan perspective presented by Levy (2011) the narrative data generated within

this research revealed the evolving nature of ASD and the necessity for mothers to

continue to adjust supports accordingly. To this end, policies must encourage supports

to be ongoing and regularly reviewed to ensure supports continue to be effective, thus

173

reflecting recommendations by Rikz, et al., (2011). ASD and caregiver supports

require more than a ‘set and go’ response and consideration must be offered to both

short-term individual and familial needs, as well as long-term challenges inherent to

ASD and sustained caregiving effort. In this way, families could also be encouraged

to plan for, and reorientate towards, strength based future directions.

(5) Greater continuity between education systems and families is essential

Strong evidence within mothers’ visual and narrative data sets in this study revealed

that disconnect exacerbates risks for both the child, the mother, and other family

members. The data from this study revealed the impact of education policies and

practices have beyond the classroom walls and into the lives of families, and their

futures. According to the participants, discontinuity layered stress, fractured health and

impacted participatory and educational opportunities for the child. Education is cited

as pivotal in helping individuals on the spectrum to achieve life outcomes and move

towards greater independence and economic engagement in their adult years (Levey,

2011). It is therefore important that educators thus retain focus on achieving

educational outcomes, for all students. To bridge the discontinuity more understanding

and partnership between parents and educators/ the education system is required.

(6) Respite is necessary to effectively support the child and achieve the

overarching aims of the health care system, including NDIS.

The goal of recent disability reform in Australia was to assist individuals with a

disability to live more independently and provide them with the supports and

equipment they need to ensure this end. It is essential that the National Disability

Insurance Authority widen the current focus on supporting just the child and consider

the child within the family system. This research showed the bidirectionality between

the child and the family system. Thus, strengthening families and attuning to the needs

of primary carers, contributes to effective supports. In this way family-centric policies

help divert costs associated with caregiver health and reduced workplace productivity.

Respite options were limited yet valued by participants and represented an important

strategy in maintaining health and sustained caregiving efforts. It is essential to

improve short-term and long-term respite options for mothers, and families.

174

(7) Further exploration of the effectiveness of photographic journaling is

necessary

Photographic journaling has shown to be an effective meaning making tool with

the data revealing how this reflective tool contributed to meaning making and helped

mothers to reorientate towards feelings of optimism, self-efficacy and resilience. The

argument for the use of meaning making strategies which harness these qualities has

been threaded throughout this thesis and further exploration of the effectiveness of this

photographic journaling tool would be beneficial. More focussed analysis on the

impact of this tool on wellness would benefit our understanding of maternal caregivers.

Such a project could be considered for PhD exploration.

Further, a number of maternal participants asked if they were able to see images

provided by other participants, yet this project was bound by ethics and was unable to

extend this opportunity. However, such expressions of interest are worth exploring.

Again, a clear argument has been threaded through this document highlighting the

benefits derived from the opportunity for participants to both tell their stories and to

be heard (Clandinin, 2007; Lincoln & Denzin, 2011; Hays & Singh, 2012; Knowles &

Cole, 2008). Further, Kuhn and Carter, (2006) assert the importance of creating

‘normative frameworks’ for mothers and evidence by McGuire (2004) outlines the

benefits of group support for mothers of children with ASD. Future projects could

enable mothers an opportunity to express their story, beyond a research capacity, to a

more relevant and connective platform, for example an online or group setting.

5.5 LIMITATIONS

This study did not seek to represent the views of all mothers of children with

ASD and acknowledges the varied range of experiences. Thus, while the small number

of participants allows valuable insight into the lived experience, a larger number of

participants would further contribute to our understanding of the heterogeneity within

the maternal experience and the nature of ASD. Thus, further research harnessing the

lived experiences of mothers caring for children with ASD is recommended. Further,

participant recruitment was focussed in the mid to mid-north coast of NSW and

recruitment beyond this locality would widen the demographic spread. Despite this,

the participant group represented a variety of family arrangements, socio-economic

backgrounds, and lived in a mix of city, small town, and regional centres.

175

The final limitation centres around research design. Thematic analysis as a data

analysis technique is often scrutinized for its apparent lack of validity and

sophistication (Braun & Clarke, 2014). However, the framework by Braun and Clarke

provided a robust, systematic process for coding qualitative data and then using that

coding to discover patterns in relation to the research question (Braun & Clarke, 2014).

Further, thematic analysis has the capacity to capture the nuances of both semiotic and

linguistic data and to provide the research rigour necessary to ensure meaningful

results are produced.

5.6 FUTURE RESEARCH

The multiplicity and longevity of stressors faced by carers suggest a need for new

research and support in many directions. In light of the findings and limitations some

opportunities to expand this current research include:

• Mothers of children with ASD are at heightened risk of psychological and

physical risk and further qualitative research would promote understanding of

how this group reorientates towards wellness. Harnessing the lived experience

will help to create strength-based strategies to sustain short term and long-term

vulnerabilities to wellness. Visual Narrative Inquiry methods, with their

inherent reflective and meaning making benefits, have a lot to offer here.

Specifically, further research, beyond Masters confines, to explore the benefits

of photographic journaling as a reflective practice is warranted.

• Other research exploring the maternal experiences of respite and work

engagement would contribute valuably to current policy landscape and

economic conversations pertaining to the sustainability of the NDIS.

• Further Visual Narrative research involving families raising children with ASD

is also warranted. Examining the experiences of multiple family members

would further enhance current understandings regarding the implications of

caring at familial level. Current policies and practices dislocate the child from

the family system yet the symbiotic relationship between the child and the

family is clear and thus more research is needed to understand the ways in

families are impacted in order to create congruent effective and strength-based

supports for all family members and family-centric policies. Further, reflective

practice of photographic journaling may benefit families in helping to locate

strengths, identify unmet needs, and to redefine life to accommodate ASD.

176

Such processes may help to foster relations and promote the familial resilience

needed to sustain caregiving efforts.

• The marital relationship retains a nuclei position in the family system and is

considered an important source of support for maternal caregivers (Sim, et al.,

2017). Findings of this study contribute to research attesting how partnerships

can deepen despite the parental challenges of ASD and the benefits of dyadic

coping strategies. Further research to explore such strength-based perspective

are recommended and would benefit not just the couple, but the family unit and

quality of care for the child.

5.7 CONCLUSION

Complexity is defined to mean “a state of having many different parts connected

or related to each other in a complicated way” (Collins dictionary, 2016). The term

complexity has been used often throughout this thesis, to describe both the nature of

ASD and caregiving. It was the complex nature of ASD and caregiving which drove

government and researcher calls for innovative ways of understanding and supporting

ASD and the families impacted by this disorder. Visual Narrative was the chosen

methodological approach with the capacity to capture these complexities.

This is the first study internationally to use Visual Narrative Inquiry methods

with mothers of children with ASD. The study asked mothers to take 21 daily

photographs and then narrate these images with the researcher. The research was

designed with the intentions of better understanding the complexities of raising a child

with ASD by listening to the lived experiences of mothers and to investigate the

effectiveness of photographic journaling for this group. The unique qualities of this

visual narrative study allow privileged access inside the lives of mothers and walls of

the family home to present new perspectives on maternal caregiving. Thematic

analysis ensured robust and relevant findings which both confirm existing literature

and make new and valued contributions to existing knowledge of ASD and the

maternal caregiving experience.

The lived maternal experience is complex and pervasive child health/behaviours.

influence maternal experiences of family, within external systems, and wellness. This

suggests, the child cannot be dislocated and supported in isolation without

consideration of the whole system in which the child lives, learns, and plays. Effective

supports must be holistic, contextualised within the family system, and strength-based.

177

Such, effective supports hinge on better understanding - this research provides such

insights. Given the central role the mother was seen to hold within the caring role and

family system it is necessary to support her within and in addition to the child and

family unit.

Mothers experience deteriorated levels of physical, mental, emotion, health and

also demonstrate remarkable tenacity through continued recalibration against these

vulnerabilities. Photographic journaling provided unique insights into the coping

strategies used by mothers and also proved a reflective, meaning making, tool to help

these five mothers reframe towards wellness, thus warrants further investigation. The

stories of strength and vulnerably told in this project break binary stereotypes

associated with ASD and maternal caregivers. The voice of the mother is powerful,

and her experiences add value to policy and service provision discussions. The visual

nature of this research makes understandings of ASD and caregiving more accessible

to further contribute to the transformation of the caregiver and ASD literature and

policy landscapes.

Reference List 179

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Appendices

: Recruitment Phase

Appendix A(a)

Information flyer distributed through ASD and caregiver networks

PARTICIPATE IN RESEARCH Information for Prospective Participants

Making visible the lived experiences of mothers of children with Autism Spectrum Disorder (ASD)

Research team contacts Principal Researcher: Mr Kirsten Baird-Bate Masters of Education (Research) student Associate Researchers: Dr Lyndal O’Gorman Principal Supervisor

Dr Beth Saggers Associate Supervisor Faculty of Education Queensland University of Technology (QUT)

What is the purpose of the research? The purpose of this research is to better understand the lived experiences of mothers of children with ASD. Raising a child with ASD is complex. Mothers of children with ASD are considered at increased risk of experiencing psychological and physical stress. In contrast, some mothers associate with feelings of wellness. This research aims to better understand the maternal caregiving experience and the (positive and negative) impacts of ASD on carers and families. Gaining insight into the varied experiences of mothers contributes towards understanding ASD and shapes policy and supports for families impacted by this disorder. This study asks mothers to participate in a photographic journaling process, taking one photograph per day for 3 weeks. Participants will then discuss the photographs in a semi-structured interview (1 hour). Are you looking for people like me? The research team is looking for mothers of children diagnosed with ASD, who meet the following criteria:

- Mothers must be willing and able to participate in all study requirements (essential). - Child aged 6-12 years of age (desirable). - Child will have received a diagnosis for more than 24 months (desirable). - Families, ideally, live in the Greater Port Macquarie region or NSW (desirable).

What will you ask me to do? You will participate in photographic journaling process. You will be asked to take one photograph per day for 21 days to reflect your life as a mother caring for a child with ASD. This may involve symbolically or literally photographing the everyday experiences, thoughts, feelings that you feel positively or negatively illustrate life with caring for a child with ASD. The focus of the photographs is the maternal lived experience, not the child. For example, the photographs may capture a sunset to symbolise hope; the blur of traffic as you race between appointments; the park – where your child

196 Appendices

had a very public meltdown; the smile of your child; the trainset your child plays with intently. The focus is your lived experience. The images will be capture on your own mobile or camera device and then emailed through to the researcher at the end of each week. After the 3rd week you will be asked to nominate approximately 4 images you feel were most representative of your experience before participating in an interview (approximately 1 hour) to discuss the images. This interview will be conducted via phone, Skype/Zoom, or in person, as convenient. You will then have the opportunity to check the interview transcript and amend and/or add final reflections. Are there any risks for me in taking part? The research team has identified the following possible risk in relation to participating in this study: This study may evoke emotions which may cause psychological discomfort. This risk is considered low-negligible. To mitigate privacy and confidentiality concerns, strict data management measures are in place, as per QUT Data Management Policies. This risk is considered negligible. All identifiable photographic subjects will be pixelated out to de-identify human subjects and ensure privacy. If these images contain children, further parental consent forms will be obtained. It should be noted that if you do agree to participate you can withdraw from participation in the research project without comment or penalty. if you withdraw prior to, during, or within 20 days after your interview, that on request any identifiable information already obtained will be destroyed. If withdrawal is informed after 20 days since the completion of the interview, data, including photographs and recordings, cannot be removed. Are there any benefits for me in taking part? It is expected that participants will benefit both directly and indirectly from this research: It is likely that the participants will benefit through gains in knowledge, understanding, and an improved sense of wellness Previous research indicates that reflective practice, meaning making, and narrative opportunities improve wellbeing, insight, and bolster reliance and confidence. Participants’ families may benefit indirectly from these positive maternal experiences. Further, participants will be contributing new understandings of ASD and the impact of this disorder on carers and families and this information will potentially help to shape new policies and services. In this way, families, service providers, and those within the wider community will also potentially benefit through more supportive, inclusive, and effective supports and community practices. Will I be compensated for my time? No, but we would very much appreciate your participation in this research and your participation will help deepen understand of ASD and the impact on families. I am interested – what should I do next? If you are interested in participating in this study, please contact the researcher for details of the next step: Kirsten Baird-Bate [email protected] You will be provided with further information to ensure that your decision and consent to participate is fully informed.

Thank You! QUT Ethics Approval Number: 1700001119

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Appendix A(b)

Contact and recruitment processes, external agencies

External agencies – contact and recruitment processes: Carers NSW Once QUT Ethics approval was obtained an approach email and recruitment flyer was sent Aspect Australia Aspect Australia offer a 3-tiered system to support researchers, this study would apply for Tier 1 access only. As per Aspect website (https://www.autismspectrum.org.au/content/apply-research-approval) includes:

Tier 1 access We will publish a page about your study on Aspect’s website for the duration of your recruitment period of the study; and include your study on our monthly listing of approved research studies on Aspect’s Facebook page. Where applicable, your study can also be included in a post on our LinkedIn and Twitter accounts.

The cost of Tier 1 support is $100 and this cost was covered by QUT HDR Student Allocation. Aspect Australia have their own Ethics application and approval processes. Once QUT Ethics was been obtained, an approach email was be sent, along with recruitment flyer and required Aspect documentation. Mid-Coast Communities and Family Advocacy Once QUT Ethics approval was obtained an approach email and recruitment flyer was sent. Organisational practice for both organisations was to include the recruitment notice in their weekly newsletter (which was distributed via email to their database) as well as place on their websites.

198 Appendices

Appendix A(c)

Information kit distributed to selected participants.

Contents included: Interview consent form; Image release form; Participant information sheet

INTERVIEW CONSENT FOR QUT RESEARCH PROJECT

Making visible the lived experiences of mothers of children with Autism Spectrum Disorder

QUT Ethics Approval Number 1700001119

RESEARCH TEAM CONTACTS Kirsten Baird-Bate [email protected] Lyndal O’Gorman [email protected] STATEMENT OF CONSENT By signing below, you are indicating that you: • Have read and understood the information document regarding this research project. • Have had any questions answered to my satisfaction. • Understand if I have any additional questions I can contact the research team. • Understand I am free to withdraw without comment or penalty and your decision to participate or not participate

will in no way impact upon your current or future relationship with QUT or associated external organisations. • Understand that this interview will be audio recorded for transcription purposes only. • Understand that if I withdraw prior to, during, or within 20 days after your interview, that on request any

identifiable information already obtained will be destroyed. • Understand that data, including photographs and recordings, cannot be removed if withdrawal is informed after

20 days since the completion of the interview. • Understand that if I have concerns about the ethical conduct of the research project I can contact the Research

Ethics Advisory Team on 07 3138 5123 or email [email protected]. • Understand that non-identifiable data from this research project may be used as comparative data in future

projects. • Agree to participate in the research project. Please tick the relevant box below:

I agree for the interview to be audio recorded. I do not agree for the interview to be audio recorded.

Name Signature Date

PLEASE RETURN THE SIGNED CONSENT FORM TO THE RESEARCHER.

A COPY WILL BE PROVIDED FOR YOUR RECORDS.

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IMAGE RELEASE CONSENT FOR QUT RESEARCH PROJECT



RESEARCH TEAM CONTACTS

Principal Researcher: Ms Kirsten Baird-Bate Masters of Education (Research) student Associate Researchers: Dr Lyndal O’Gorman Principal Supervisor

Dr Beth Saggers Associate Supervisor Faculty of Education, Queensland University of Technology (QUT)

If you agree to give consent regarding the use of your image and speech in the audio recordings and images as part of this research project. Please read and complete the consent below. STATEMENT OF CONSENT By signing below, you are indicating that you: • Have read and understood the information document regarding this research project. • Have had any questions answered to my satisfaction. • Understand if I have any additional questions I can contact the research team. • Understand I am free to withdraw without comment or penalty and your decision to participate or not

participate will in no way impact upon your current or future relationship with QUT or associated external organisations.

• Understand that if I withdraw prior to, during, or within 20 days after your interview, that on request any identifiable information already obtained will be destroyed.

• Understand that data, including photographs and recordings, cannot be removed if withdrawal is informed after 20 days since the completion of the interview.

• Understand that if any photographs feature identifiable images of people, the research will use pixilation to de-identify human objects and conceal identity. Pixilation will be used to conceal the identity of all photographic subjects.

• Understand that if I have concerns about the ethical conduct of the research project I can contact the Research Ethics Advisory Team on 07 3138 5123 or email [email protected].

• Understand that non-identifiable data from this research project may be used as comparative data in future projects.

• I agree to QUT using images of me for this research as explained in this Participation Information and Image Release Consent for QUT Research Project form.

• Agree to participate in the research project. Name Signature Date

PLEASE RETURN THE SIGNED CONSENT FORM TO THE RESEARCHER. A COPY WILL BE PROVIDED FOR YOUR RECORDS.

200 Appendices

PARTICIPANT INFORMATION FOR QUT RESEARCH PROJECT – Photographic & Interview –



RESEARCH TEAM

Principal Researcher: Ms Kirsten Baird-Bate Masters Education (Research) Associate Researchers: Dr Lyndal O’Gorman Principal Supervisor

Dr Beth Saggers Associate Supervisor Faculty of Education, Queensland University of Technology (QUT)

Description This research project is being undertaken as part of a Masters Research study for Kirsten Baird-Bate. The purpose of this project is to better understand the lived experiences of mothers of children on the ASD. The project plans to do this by inviting a group of mothers to capture their daily experiences through photographic journaling. Mothers will be asked to photograph aspects of their life they feel are (positively or negatively) illustrative of their life caring for a child with ASD. Photographs may be symbolic or literally represent their thoughts, feelings, life events. You may or may not choose to include images of your children. Privacy measures will be used to conceal the identity of all persons featured. You are invited to participate in this research project because you are a mother of a child diagnosed with ASD and you satisfy the selection criteria. Raising a child with ASD is complex. Mothers of children with ASD are considered at increased risk of experiencing psychological and physical stress. In contrast, some mothers associate with feelings of wellness. Gaining insight into the varied experiences of mothers contributes towards understanding ASD and shapes policy and supports for families impacted by this disorder. Participation Thank you for agreeing to participate. Your participation will involve: 1. Taking one photograph per day for 21 days and emailing these through to the researcher; and 2. An interview with the researcher.

In this interview, the images / a selection of images will be discussed with the researcher. This interview will involve an audio recording and will be conducted via phone, Skype, or in person at an agreed location. It is expected that this interview will take no more than 1 hour of your time. Following this interview, you will have the opportunity to review the information and amend or add final reflections, if required.

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Interview questions may include:

What are your experiences of life caring for your child with ASD? How do you feel about your role as a caregiver? How do you feel about yourself? How do you perceive ASD impacts on your family? Have you ever used photographic journaling as a reflective too? What were your perceptions of this reflective tool?

Your participation in this research project is entirely voluntary. If you do agree to participate you can withdraw from the research project without comment or penalty. You can withdraw any time prior to or during the interview and on request any identifiable information already obtained from you will be destroyed. If you withdraw within 20 days after your interview, on request any identifiable information already obtained from you will be destroyed. Data, including photographs and recordings, cannot be removed if withdrawal is informed after 20 days since the completion of the interview. Your decision to participate or not participate will in no way impact upon your current or future relationship with QUT or associated external organisations. Expected benefits It is expected that this research project may benefit you directly through enhanced insight and understanding and wellbeing. The data gathered in this project may also help to inform more effective policy and support provision, thus indirectly benefiting other families caring for children on the Autism Spectrum, as well as the wider community. Risks There are minimal risks associated with your participation in this research project. Possible risks may include possible feelings of psychological discomfort which may arise the reflective and sensitive nature of the topic and task. If at any time this occurs, you are actively encouraged to seek professional support from your GP. Alternatively, mental health agencies such as Lifeline provide access to online, phone or face-to-face support, call 13 11 14 for 24 hour telephone crisis support. Carers NSW also offer counselling and support specific to carers. Contact the Carer Line on 1800 242 636 for support. Data privacy may also represent concern, risk is minimal and managed by strict safeguards, as per QUT policy. Further, this study has been designed to be flexible and sensitive to the time and task pressures of you to ensure minimal inconvenience. Privacy and Confidentiality All comments and responses will be treated confidentially unless required by law. The names of individual persons are not required in any of the responses. As the research project involves photographic images as well as an audio recording of the interview:

• All identifiable photographic subjects will be pixelated out to de-identify human subjects and ensure privacy. If these images contain children, further parental consent forms will be obtained.

• You will have the opportunity to verify your comments and responses prior to final inclusion.

• The recording and photographic data will be destroyed 5 years after the last publication.

• The recording and photographic data will not be used for any other purpose.

• Only the named researchers will have access to the recording and photographic data.

• It is not possible to participate in the research project without being recorded and photographic data submitted. Any data collected as part of this research project will be stored securely as per QUT’s Management of research data policy. Please note that non-identifiable data from this research project may be used as comparative data in future research projects or stored on an open access database for secondary analysis. Strict measures are also in place to manage the produced images and protect the identity and privacy of those who may feature in the images. You may choose to apply post-editing techniques to conceal identities of those in the photographs and all images will be stored securely according to QUT data management guidelines and disseminated, upon consent, for research purposes only.

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Consent to Participate We would like to ask you to sign a written consent form (enclosed) to confirm your agreement to participate. Questions / further information about the RESEARCH project If you have any questions or require further information, please contact one of the listed researchers: Kirsten Baird-Bate [email protected] Lyndal O’Gorman [email protected] Concerns / complaints regarding the conduct of the RESEARCH project QUT is committed to research integrity and the ethical conduct of research projects. However, if you do have any concerns or complaints about the ethical conduct of the research project you may contact the QUT Research Ethics Advisory Team on 07 3138 5123 or email [email protected]. The QUT Research Ethics Advisory Team is not connected with the research project and can facilitate a resolution to your concern in an impartial manner. THANK YOU FOR HELPING WITH THIS RESEARCH PROJECT. PLEASE KEEP THIS SHEET FOR YOUR INFORMATION.

: Data Collection Phase

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Appendix B(a)

Potential lines of inquiry, based on week 1 photographic submission, P5

Participant Code_Week Submitted_Image#

Caption submitted by participant

Line of inquiry

P5 – Potential lines of inquiry – Images Week 1:

P5_Week1_Image1

[Child] ASD Princess in her element (Photo of child in water)

What is happening here? Does the water calm Charlotte down?

P5_Week1_Image2

Another iPad bites the dust

- What happened! (is this related to disability? Just another thing to deal with? Why is this image important?)

- On purpose? Accident?

- Humour? How do you cope with such incidents?

P5_Week1_Image3

Cold Tea and empty lolly jar

- NDIS paperwork?

- Is this disability related? The juggle of admin and caregiving? Cold tea and empty lolly jar a sign of stress? What was the stress about? Why is this image important?

- advocating / paperwork

P5_Week1_Image4

[Sibling] 9 [Child’s]rock

- friend or sibling? - What makes this relationship so special? How does this make you feel? (keep relating back to the mother)

- How do the two relate? What do they do together? How does the fiend react if the child has a meltdown? Do you need to consciously intently foster relationships and scaffold success? If so, how do you achieve this?

P5_Week1_Image5

Holidays coming up

- With children? - Without children? – Whose going? Why? Holidays often? Why special? Do they often holiday with/without children? Why? - respite?

P5_Week1_Image6

I am tired, another bad night

- Why was it a bad night? How often does that happen? How do you recoup the next day? How do you deal with mothering the next day? Strategies do you use?

P5_Week1_Image7

Talking to mother on the other side of the world

Support strategies? Above and beyond relationship with mother do you feel you draw on this window of support to help you in your carer role? - What other supports?

: Data Analysis Phase Two

204 Appendices

Phase two of Braun & Clarke’s analytic process: Snapshots (overview and close view) of framework

used to systemic coding of participant data

: Data Analysis Phase Two

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Phase two Braun & Clarke’s analytic process: Snapshot of participant’s colour coded interview

transcript. Image shows interrelated patterns and annotated insights

: Data Analysis Phase Three

206 Appendices

Phase 3 Braun & Clarke’s analytic process, Thematic development

Sub sectioned appendices detail the thought processes and evidence of mind-mapping as potential themes developed across

three stages. Notations from researcher’s reflexive journal.

Appendix E(a) Notes from reflexive journal: Potential Themes, 1to emerge in relation to research questions

RQ1 What are the lived experiences of mothers of children with ASD?

- Child health and behaviour

- Service provision / NDIS / Advocacy / paperwork and access

- Education

- Work / finances

- Relationships / significant other / family dynamics and sibling ad familial health

- Maternal health / sleep / mental and emotional health / “the juggle” / respite / change

- Sense of self beyond mothering / meaning making / life musings

RQ2 How do mothers of children with ASD use photographic journaling as a reflective tool?

- Storytelling,

- Keepsakes, and happy snaps

Potential definitions of prominent themes:

Storytelling, definition: The deliberate choice to take or include a photograph in order to convey a

message or constructing an image to represent thoughts, feelings, events. eg. Through use of filters or

searching the internet to find images to convey message. This occurred a number of times, potentially

in relation to ‘significant events’ and thus may be understood as a process of meaning making?

Keepsakes and happy snaps definition: Taking photographs of happy times or memorable times then

using these photographs to refer back to. Photographs act as a positive ‘hook’. Positive recall. Memory of

milestones and achievements.

Mothers also commented on the process as a whole: how they looked back at all the photographs and

realising the power of what they had created.

Appendix E(b) Notes from reflexive journal: Potential Themes, 2nd evolution. Evolving these themes further

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Although I feel a sense of certainty as to the candidate themes under both RQ1 and RQ2, the way in which I have sort to arrange and communicate the themes under RQ1 has shifted a number of times. I am conscious of capturing the complexity and richness of the maternal narrative and communicating this in a concise and coherence fashion. At first, I felt that the mother and child needed to be ‘separated out’; the mother in relation to her child and the mother in relation to herself. I saw the themes as concentric circles, intersecting at the point in which the mother needed to advocate for the child. I then endeavoured to ‘flesh out’ what each of these themes may encapsulate and how I could communicate them in a concise, coherent manner. This process is stepped out below:

Potential Themes, 2, mud map:

The mother in relation to her child:

The maternal lived experiences are coloured by the health and behaviour of the child and the points at which the child interacts with their environment – through education; therapies and service provisions; and the wider community. It is at these intersections that the mother needs to advocate for the child. The nature and degree of advocacy will be determined by a range of contextual factors. The positive or negative nature of these intersection points will influence maternal health and wellbeing.

The mother in relation to herself:

Evident was the maternal story beyond caring for her child. The mother’s work and life path aspirations; significant relationships; the way in which she was adjusting to changes and transitions in her personal life; her thoughts and musings about life; her self-identity; and health and wellbeing. Although these factors were influenced by the child with ASD, there was also a sense that these elements existed above and beyond the maternal sphere.

The mother in relation to her child:

- Child behaviour and health

- Service provision

o Accessibility, choice, and congruence

208 Appendices

o NDIS: process and paperwork

- Education

- Community

-

The mother in relation to her self

- Sense of self yet at the influence of others/ other factors

o Health wellbeing

§ Mental and emotional health

§ Physical health

§ Sleep

§ Respite

o Work and life path aspirations

o Do relationships go here?

o Home

- Internal landscape – who she is as a person – self-identity; lessons learnt, internal intangible processes

Relationships (separate or does this go under mother / child themes?)

o How the child relates to family

o The dynamics of the family

o Friend and external family members

Appendix E(c) Notes from Reflexive Journal: Potential Themes, 3rd evolution.

Potential Themes 3

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I felt that the themes were more ‘tangled’ and complex than this. I considered whether the circles perhaps overlayed each other completely, like transparent sheets, yet wondered how best to communicate this co-dependence and interrelatedness. I

felt the concept of ‘intersections’ was valid.

I again began to ‘play’ I went back to mind mapping and focussed on tracing the relationships between the themes. Upon doing this, I could clearly see that the most influential theme was ‘child health and behaviour’ and the most influenced theme was maternal health. I felt that this thematic map told a more cohesive and accurate story and from here tried to move the

model into written form.

Potential Themes, 3, mud map:

Appendix E(d) Notes from reflexive journal: Potential Themes, draft definitions

210 Appendices

I drafted definitions by looking at the interrelations between codes and the ‘qualities’ of the data. I used a colourful quote which ‘jumped out’ and illuminated the coded qualities within the definition. I felt these quotes were in the spirit of narrative methodologies.

Child Health & Behaviour “the perpetuity of ……”

This theme is not concerned with detailing the actual behaviours and the negativity and challenge associated with these. Rather, this set of narratives focuses on how mothers act to support her child/children to navigate through these health and behavioural issues. This reflects the prominence of the code “mother supporting child” which was evident across all participants. Although mothers communicated the challenges of child health and behaviour, particularly the ramifications on familial and maternal health and also community engagement, the essence of their stories was that of an enduring drive to understand, enact necessary supports, and foster the mother-child relationship.

- Toileting

- “Behaviour as a form of communication”

o Challenging, restrictive, repetitive, sensory, anxious behaviours

o Familial dynamics “Divide and conquer”

o Familial / sibling wellness

- “The space between”

o Behaviours that sit in juxtaposition to societal norms and how the mother navigates this space; seeking to understand, support, and advocate for the child. Includes community perceptions of ASD.

Service provision “intersections”

This theme does not service a debate as to whether professional support services are good, bad or otherwise. Narrowing the research in this way would fail to capture the complexities associated with service provision. The focus of the study was the maternal experiences. Her experience was shaped when it intersected with external systems. Thus, this theme discusses the intersection between service providers and the maternal lived experience. Service providers have a positive or negative impact on maternal health and it is often at this point that the mother needs to advocate for more effective supports and understanding. The degree of advocacy can also be impacted by locality and the bureaucratic processes of the NDIS.

Education System

Similarly, this theme is concerned with the intersection between the education system, the child, and maternal lived experience. The focus is not on the ins and outs of good or bad teaching practice. The focus is on how the education system influences, positively or negatively, the lived experiences of mothers of children on the spectrum.

Maternal wellness

This broad theme relates to all aspects of maternal wellness – her health; relationships; work and life aspirations; self-identity; and her attitudes towards life.

- Physical mental and emotional health “just exhausted”

o “The juggle”

o Respite

o Relationships

- Work and life path aspirations

- Self identity “the self beyond mothering”

o Home

- Attitudes towards life, learnings “Life beyond the surface”

: Ethical Considerations

Assessment of risk and strategies to minimise risks

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In gauging the level of potential risk in participating in this study, the following aspects were considered; potential kinds of harm; likelihood and severity of this harm; how these may affect different populations. Particular consideration was given to the sensitive nature of this research and the potential vulnerabilities associated with participants and potential non-participants.

Potential kinds of harm

Psychological discomfort Participants are being asked to reflect on their lives with ASD and as a result this may evoke some feelings of worthlessness, distress, guilt, anger or fear, or other emotional responses incited by reflection of their parenting experiences. Thus, there is the potential for a low level of psychological distress.

Data privacy concerns To ensure research integrity written consent forms will be collected from participants and stored and interviews will be recorded to enable transcription of data. The sensitive nature of the research and the use photographic images present an element of risk. It is imperative to ensure confidentiality, privacy and safety direct the research design, guidelines to safeguard privacy are discussed below.

Inconvenience: The time involved in participating in this study may be inconvenient to mothers/caregivers, who tend to be busy. Sensitive to the time and task pressures on this population, and not wishing to add further stress, the data collection process has been designed to be flexible and accommodating to the individual participant. These measures are discussed further below.

Likelihood The likelihood of harm is minimal, more likely, this process may create feelings of discomfort.

Given the research design and adherence to safety policy measures, the likelihood of harm is minimal, more likely feelings of discomfort.

It is likely that inconvenience will cause only minor discomfort.

Choices, experience, perceptions, values, vulnerabilities of different populations

In gauging risks, it was necessary to consider the perceptions, experiences, values, and vulnerabilities of research participants. The potential for psychological risk stems from the sensitive nature of this research topic, that being the relationship between a mother and her child, the impact of ASD has on her life and family, and her journey as a caregiver. However, the values of this population negate risk factors. Previous research suggests this population is invested in having their lived experiences heard and values processes which enhance awareness of ASD and caregiving (Marshall & Long, 2010; Phelps, 2009). Mothers are more likely to endure a small amount of risk and discomfort for the benefit of their children and families. Further, mothers are likely to benefit directly from participations, thus further justifying any potential risk.

Given the inherent vulnerabilities of this research population and the sensitive nature of this task strict privacy safeguards need to be maintained. In terms of photographic images of children, mothers may vary according to their level of comfort in including these images in research. Research needs to give the mother a choice and provide safeguards to protect identity if she does choose to use images containing children.

Necessary to consider the time and task pressures on this population and ensure this consideration is central to the research design. Other populations are not likely to be impacted by this study.

212 Appendices

Other populations affected

As mothers tend to be at the pivot point in the family system (Biksika, Sharpley & Bell, 2013) there is a minimal chance that feelings of psychological discomfort may potentially flow onto other family members, including children. Again, this risk is considered minimal and the research design accounts for potential risks and acts to offset harm on all identified non-participants.

Non-participants who may feature in the images may also be considered at risk. As some of these images may contain children, it is imperative to ensure confidentiality, privacy and safety direct the research design. These guidelines to minimize are discussed below.

There are no considered risks to other populations.

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The above risk factors have been carefully considered and the research design acts to minimise and offset risk. The risk minimization strategies span from recruitment through the post research/data management stage. I am committed to research integrity and ethical conduct at all stages of this research project.

Risk minimization strategies

To minimize psychological distress factors Given the inherent vulnerabilities and sensitivities inherent in the nature of this project, this research is committed to ensuring respect and care for the participants’ wellbeing is prioritised.

To minimize data privacy concerns: This study adheres to QUT Privacy and Data Management policies and complies with the Information Privacy Act 2009. These legislative documents inform the collection, storage, use, disclosure of personal and sensitive information and safeguard measures.

To minimize inconvenience: The research has been designed to be as transparent, flexible, and non-invasive as possible.

Recruitment stage

The recruitment flyer will clearly disclose that this study may evoke certain emotions which may cause discomfort or distress. This ensures that mothers, from the outset, understand the risks. Once participation has been secured, an information kit will be sent to participants and listed within this package are details of mental health and health resources where mothers can obtain continued support. This resources list will include, Lifeline and Carers NSW Counselling Services, and will also refer mothers to their GP, if required.

At recruitment stage the participants will be made aware of the research purposes, methods and requirements, risks, outcomes, and extent to which information will be disclosed. Prior to commencement, participants will provide written consent for their identifiable data to be collected and stored electronically. Participants will be informed of photographic production techniques they can use to protect identity of photographic subjects. Participants will be made aware that they can withdraw from the research project without comment or penalty. Participants will be made aware of data management procedures if withdrawal occurs. For example:

- If participants withdraw prior to or during the interview they may request any identifiable information already obtained be destroyed.

From the initial recruitment stage, the research requirements will be made clear to potential participants.

214 Appendices

- If withdrawal occurs within 20 days after the interview, on request, any identifiable information already obtained will be destroyed.

- If withdrawal is informed after 20 days from the completion of the interview, data, including photographs and recordings, cannot be removed.

Participants will be given the contact details of the research team should they wish to discuss their privacy concerns.

Data collection Participants are asked to email through their photographs to the researcher on a weekly basis. This point of contact acts as both a data collection point as well as a ‘check-in’ contact point between the mother and the researcher. The weekly regularity of these points of contact ensure participants feel supported throughout the research processes. Mothers will be reminded of the professional health supports if feelings beyond discomfort generate as a result of the study.

At post-production stage, the researcher will pixelate out any identifying features of human objects before using the photographs and obtain parental consent if the image features a child. Participants will give consent for their identifiable data to be collected via audio-tape and stored electronically. Data transcripts will be coded to protect identify. Participants will be given the opportunity to review interview transcripts and provide final reflections. All data collected will be password protected and stored on QUT’s secure cloud based data storage service. Only the research team will have access to the data for research purposes only.

Within the data collection stage, the majority of contact with participants will be via email. The semi-structured interview will ask participants to nominate their preferred time, day, location, and mode (phone, Skype, in-person) to further maximize convenience. The researcher will endeavour to accommodate these preferences, within the reasonable parameters of the research project.

Data management/post-research

Participants will have the contact details of professional health supports if feelings beyond discomfort generate as a result of the study.

Participants will have the contact details of the research team should they wish to discuss privacy concerns.

Participants will have contact details of the research team, as well as counselling services should levels of discomfort be experienced and the need for further assistance arise.

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: Overview of Visual Narrative Data – Participant 1

The following is provided for each maternal participant:

Appendix _(a) Participant snapshot. Vignette of mother’s story.

Appendix _(b) Participant nominated images. Selection of photographs mothers nominated as ‘most illustrative’ of her experience, accompanied with the image caption and/or transcript extract.

Appendix _(c) Participant final reflections. Some mothers chose to submit a final reflection.

Appendix G (a) Participant Snapshot P1

Participant snapshot P1

Participant 1 cared for her son, aged 13, who is non-verbal and is diagnosed with severe autism and Downs Syndrome. The mother also had 3 other children, daughters, two of the girls are mid-teens while the third daughter is aged around 10. The family relocated from Melbourne a number of years

ago and now live near Coffs Harbour, on the Mid-North Coast of NSW. The intensity of the child’s care needs dominated her visual narrative. The health, behaviour, and size of the child significantly impacted on the ways in which the family lived and related and restricted the family’s ability to live beyond the confines of home or to engage in social activities within the home. The mother was dependent on formalised care to assist with the care needs of the child and male support workers take

the child out into the community. Only then could the mother achieve respite. She primarily used this time to attend to the needs of her other children. However, a full respite experience was only achieved when the child stays overnight at the local respite centre yet, this support was sporadic due to area demand outweighing bed availability. Significant and sustained incidences involving the child being

suspended from school further deteriorated the maternal experience in regard to health, community engagement, and capacity to work. The mother articulated genuine concerns for the health of her other children and the impact caring was having on them.

Appendix H(b) Participant 1 Nominated Images

216 Appendices

Participant 1 nominates the following three images as most illustrative of her journey.

No annotations were submitted with the photographs, exerts are from the semi-

structured interview. A final reflection has also been provided.

(P1). Nominated image 1. Child’s writing on whiteboard.

Oh! [Child] wrote his name! That’s right, that was just so beautiful. She these

are the things that you know when you are a parent, and your child, even though he is 13, and he can write his name, it is just so thrilling. Such a joy to see that. (Interview extract).

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(P1). Nominated image2. Older sibling caring for child.

So that’s my daughter…. She is my eldest… That morning I got up. Cause I

had broken my rib. During all this I had broken my ribs. Sorry for being such a misery. Yeah, I fell over in the kitchen, about 6 weeks ago now. But God. It’s been just dreadful. The first few weeks it was very painful. I could not do anything. I got extra support actually, I got morning help and night help just to bath him and get Hugo dressed and all that sort of stuff. One morning I got up and Marigold had got up and tidied up the whole house. And she got Hugo up, she’d bathed him for me, and she’d got him dressed, and put his nappy on

him, and all that. And I got up and she was giving him his breakfast! And I was like ‘thank you so much!’ And so, I took a photo of that. Because I just thought that that was beautiful you know. I was so grateful. The house was just bloody immaculate. It was amazing. And so occasionally, the girls will step up for the occasion. And really chip it, you know… It is a painful relationship. The kids just really get annoyed with Hugo. Totally. And the impact that it has on them. You know. No. They are not close. No. See you

can’t get up to Hugo and give him a cuddle because he will pull your hair! I’m basically the only person that can get near him. So… Umm… They have had a lot of pain. There has been a lot of pain involved in dealing with him. And for young girls, and poo … and they can’t have friend overs. And so, it is very difficult, you know. (Interview extract).

218 Appendices

(P1). Nominated image 3. Continence suit left on heater

So that day [Child]had left for school. Each day at school I have to provide two continence suits. And he goes to school in one and then there is a spare for him. And I had forgotten the spare, it was on the heater drying. And so, it was a mad rush into town. The school phoned me immediately. Umm, he … , he had done a huge poo. And this and that. And so, I had to race into town with the school. It is quite symbolic. I have had a lot of trouble with the school and I like to keep them at bay, I guess… Last year was his first year in

year 7 at a new school. He spent the majority of the time at home, on suspension. And they were suspending him every month. There were quite severe, significant, incidences of violence and aggression. The teachers, the school, the unit were not managing [Child]. The transition was dreadful. And, I was almost like a warrior for this. As I had to advocate for [Child], for his disability, which is severe… And I really wasn’t getting along with the deputy principal. The principal would not see me… The school counsellor would not give me a hearing… Um, so I was going backwards. My whole family went

backwards. Because of this. We all went into a depression. Because having Hugo home means I am 100% a prisoner. Because I cannot get out during the day that means. And we were not on NDIS then, so there was absolutely no chance of getting support workers to come and assist so I could get out. And it was just a horrible, horrible year. (Interview extract).

Appendix B (c) Participant 1 final reflection

The saga with the DET continues as the day after the interview he was

suspended for hair pulling again until he left for holidays...


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Appendix H (a) Participant 2 Snapshot

Participant 2 snapshot

Participant 2 cared for her daughter, aged 7, who is non-verbal and diagnosed Level 3 ASD. The mother also had 1 other child, an older boy, and was married. The family lived in a rural setting outside of Coffs Harbour. The mother’s narrative was defined by her willingness to extend

understanding and support to her daughter, even in the face of difficult and sustained health and behavioural challenges. To accommodate the needs of the child, the mother recalibrated and re-prioritised aspects of her life and showed willingness to also consider her own mental, emotional, and physical health, as she was aware her health had been impacted by sustained caregiving. The mother found fulfilment in her part-time role within the community sector, however, she had recently reduced

work hours to accommodate care requirements. Her visual narrative emphasised her efforts to attend to, and balance, different aspects of her life.

Appendix H (b) Participant 2 Nominated Images

The mother nominates the following 3 photographs as most illustrative of her journey.

Annotations were submitted with each photo. No final reflection was provided.

220 Appendices

(P2). Nominated image 1. Female boxer.

Telling a friend today about how my daughter spent the first 15 minutes out of bed this morning lining me up for head butts (and landing a few). As he is a former boxer, I jokingly suggested I might need him to show me some defensive postures. (Photograph annotation).

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(P2). Nominated image 2. Child eating pasta.

[Child] who has eaten barely anything but bacon and hot chips and usually wants to take food to her room to eat...sat at table and fed pesto pasta to a houseguest before trying (rubbing it around the outside of her mouth). We are all stupefied and happy. (Photograph annotation).

222 Appendices

(P2). Nominated image 3. Knot of hair.

She twists her hair around and around. In one hour she has a knot that cannot be brushed out. It’s been a while since we’ve had to cut some dreadlocks out. Back to the hairdresser for a pixie cut (which she rocks!) or let her have a shaggy kind of long hair... because I can tell she wants to have long hair? Living in the space between her needs vs societal pressures. (Photograph annotation).

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Appendix I (a) Participant 3 Snapshot


Participant 3 ws the mother to 3 children; two boys aged 11 & 7 diagnosed ASD, as well as a 4-year-old daughter who she believed may also be on the spectrum. The mother was married, and the family lived in Sydney with her in-laws who they moved in with following the diagnosis of their first child several years ago. The mother’s visual narrative reflected her emphasis on relationships and she showed

a drive to foster understanding and harmonise familial dynamics, which were often complicated given her sons’ variant diagnostic expressions. The mother recently decided to home school her eldest child following incidences of continued school refusal and worsening anxiety. Although she feels that home schooling was the best decision for the child and helped to foster a secure child/parent bond, it also skewed her occupational engagement and health. The mother was a registered nurse and enjoyed, and

appreciated, the opportunity to engage in a role, beyond mothering and caring. She had recently reduced her hours to take the time needed to care for her child and her own health and this has come with both personal and financial consequences.

Appendix I (b) Participant 3 Nominated Images

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The mother nominates the following 3 images as most illustrative of her journey, two

images of the aquarium were submitted to represent the one day. Annotations were

submitted with daily photographs. No final reflection was provided.

(P3). Nominated images 1 &2. Day at aquarium.

A long desired day out to the aquarium with 7 & 4year old. 12 year old is home with daddy because he doesn’t tolerate trips to the aquarium. We have

to plan all family outings carefully and usually have to split up to accommodate everyone. (Photo annotation for both image).

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(P3). Nominated image 3. Off to work.

Heading off bright and early to a work conference in the city. This was my favourite moment of the whole day. (Photo annotation).


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Appendix J(a) Participant 4 Snapshot


Participant 4 was mother to two young children aged 3 & 5, both diagnosed with ASD. The younger child also had a genetic condition, anxiety, and showed susceptibility to more common child-hood illnesses. After separating from her husband, who had mental health issues, the mother returned to the

small town in Central West NSW where she grew up and her family still resided and operated a family business. The mother worked within the family business and at the time of the interview she was also living with her parents. She was due to move into her own home the following week, the same week her divorce was to be finalised. A prominent theme of regaining independence existed for this mother, she spoke of her desire to rebuild her own sense of identity and create a new home and routine for her

children. She was also desperate to secure the necessary therapy supports for her children, yet this was hampered by her regional locality, service availability. The mother actively engaged in advocacy attempts to redress this situation and drew attention to the bureaucratic processes and policies issues related to caring for children with ASD.

Appendix J (b) Participant 3 Nominated Images

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The mother nominates the following three images as most illustrative of her journey.

No annotations were submitted along with the daily photographs. The captions below

were submitted when she nominated the highlight photographs most illustrative of her

journey. No further final reflection was provided.

(P4). Nominated image 1. Paperwork, NDIS service agreement.

I always seem to have to fill paperwork out for both my kids. (Photograph annotation provided in final reflection).

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(P4). Nominated image2. Schedule.

It shows how much has have going on in my life. (Photograph annotation

provided in final reflection).

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(P4). Nominated image 3. Mother feeding child.

Food is a battle in my house. And one of my kids is always not eating. (Photograph annotation provided in final reflection).

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Appendix K (a) Participant 5 Snapshot


Participant 5 was mother to two children, a son and a youngest daughter, 8 years, diagnosed level 3 ASD. The mother lived in the Hunter region, NSW with her children and her husband, although his job in the mining industry saw him work long hours or took him away from the home. As a French native, the mother is also without physical support of her family, however, gained emotional support from her

mother who she regularly communicated with via Skype. The mother reflected often on her happy childhood and how this shaped her optimistic disposition. However, she was honest in sharing she felt the pervasive challenges of autism had broken her happy nature and felt her health had deteriorated. She valued opportunities to work and considered them as essential to her mental health, yet her capacity to engage in work was capped by NDIS funding and numbered support hours.

Appendix K (b) Participant 5 Nominated Images

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The mother nominates the following 3 images as most illustrative of her journey. The

complete photo index card in included. Annotations were submitted with daily

photographs and a final reflection was provided.

(P5). Nominated image 1. Mother smiling. “I have always been told I am a smiley person.” (Photograph caption).

I guess, it has always been from my upbringing, but I have always been told to look at the good things in life. Although, I must admit that the last few days [Child] has been very difficult, and I am really struggling. I woke up this morning and I was crying by 7 o’clock. She has been up since 5 o’clock and she has been so difficult. But, umm, I have got the index in front of me and I

just see my happy face over there and I just think “oh well, tomorrow will be better… I think [Child] did break my happy nature. It is much harder than I ever thought it would be. And I honestly thought that if somebody could deal with this journey, I could, some days it is just too hard. So, I am not going to lie. I try to keep strong and do my best but some days it is just really hard (Interview Extract)

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(P5). Nominated image 2. Mother outside, smiling. “Going outside to breathe the fresh air.” (Photograph caption).

Naturally, to be honest, even before [Child, I am a little bit bad at doing anything for myself anyway. I attend to everybody’s needs, I have always put

myself last. So, I, I just try to grasp the little times. So, for example, there is one photo of me where I have said, fresh air, I have a smile, I am just outside, I am looking at the plants and I was just like, wow this is nice outside, we are so lucky to live outside and not in a flat and try to make the little moments count (Interview Extract).

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(P5). Nominated image 3. Flowers. “Flowers from the garden.” (Photograph caption).

Flowers make me happy. Because at the end of the day you know people are not going to remember you if you had a nice house or anything like that, they are going to remember you if you have been kind to other people. Because, I want to know that I did the best I could (Interview Extract).

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Appendix K (c) Participant 5 Final Reflection

I apologise for being a teary mess the other day, I don't deal well with lack of sleep and we have had a fair few setbacks lately outside of [Child] (our building renovations have a been troublesome for one). It just became a bit much. Despite struggling at times, I still remain a positive person on the outlook of life. Over the years we have had to make many different challenges on different levels: social, financial, professional to our lives to make it work the best we can and keep our family lives a priority.

It hasn’t been an easy journey but human nature and us I guess are resilient and adaptive to changes. It has opened our eyes, mind, doors and home onto a world that we wouldn't have known much otherwise... the disability world. I am very grateful to have 2 wonderful healthy and thriving children and a supportive husband and for this I am still richer and happier than a lot of the population. One of my favourite life quotes is a French one "Il faut avoir le courage d'être

heureux" - One must have the courage of being happy. We are not born happy or unhappy, yes, some people have more luck, environmental restraints or else but we can all at our own level rejoice on the little things or pleasures that life brings us, grasp on them and make the decision to turn their beauty into our happiness. It means that you have to be willing to put the hard work into it and take risks but the rewards are priceless. I consider myself privileged to have been able to be a mum and I hope I will

continue in this journey to help both my kids develop to the best of their abilities while letting them follow their individuality. If at the end of my life I could claim that I raised my children to be caring, loving, independent, open minded and tolerant of the world then I would die a proud mum. I enjoyed the little time taking the photos and reflecting on them provided me.

kirsten baird-bate ba bus. comms. post grad dip. early ... · making visible the lived experiences...

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