Developing the Rights Approach for Autism.

This is an abridged version of the Professorial inaugural lecture delivered by Nick

Hodge, Professor of Inclusive Practice. It was presented on 14th March 2017 6.30-

7.30pm in the Charles Street Lecture Theatre, Sheffield Institute of Education,

Sheffield Hallam University.

This presentation can be accessed at https://theautismcentre.wordpress.com/ You

are welcome to download multiple copies. Feedback is welcome on the ideas

contained and suggestions for how to develop further the Rights Approach for

Autism. Please email me at n.s.hodge@shu.ac.uk

Twitter chat for the presentation can be found at: #RightsAutism

In memoriam: Dr. Robin Smith and John Beecher

Dedication: To my parents, Leslie and Barbara Hodge

It certainly feels an honour to be made a Professor and especially by a University as

fine and important to me as Sheffield Hallam. But this is not an honour that is mine. I

am just the smallest of cogs in a community of disabled people, their families and

their academic and practitioner allies. I am blessed to be working amongst,

colleagues and other members of the autistic, autism and disability communities who

inspire me daily through their passion and commitment to the enablement of learning

and effecting positive social change. And so in truth this Professorship belongs to all

in our autism and disability communities. I know what some of you are thinking - give

us the pay then and you can keep the title. And with fewer than one in six autistic

adults in full employment (NAS 2016) and Milton and Bracher (2013) highlighting

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how researchers build their careers on mining the intimacies of the lives of autistic

people and their families but offer few opportunities for paid employment for autistic

researchers, then that is certainly a legitimate call. And I celebrate the success that

colleagues such as Dr Damian Milton and Professor Nicki Martin from London South

Bank University are achieving in leading the way to remedy this. But, whilst not

without its issues, the making of a Professor of Inclusive Practice remains a critical

indicator of the significance that Sheffield Hallam University attaches to the inclusion

agenda. It is an acknowledgement that the fight against exclusionary practices is

recognised as being of both academic and practical significance. Indeed the study

and promotion of educational and social inclusion has been positioned at the very

centre of the work of the Sheffield Institute of Education.

Looking back over 30 years of working in the field of autism to prepare for this

evening I found myself frequently lost in the stories of experience that are contained

within and spill from my being. Dr. Muna Abdi (2017) from the Sheffield Institute of

Education asserts that we come to know ourselves through the stories that we tell

about ourselves and those that are told about us. And in the same way we can come

to know autism through the stories that are told about 'it '. My colleagues Professors

Cathy Burnett and Guy Merchant (2014) have developed a methodological

approach, a framework to help guide researchers, that they have termed stacking

stories. This approach involves the collation of stories from participants about, for

example, a particular event. Looking across and between these different accounts

Burnett and Merchant argue reveals the rhizomic nature of experience of a shared

phenomenon 'with threads of each (story) appearing in the others, sometimes

surfacing, sometimes disappearing from view' (p.267). I think of this like a

kaleidoscope . So in relation to autism each time we add a story of autism to our

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stack it is like another turn of the kaleidoscope. A new pattern emerges in which

elements that were foregrounded in the previous pattern might now move backstage

as others become more vibrant and demand the attention of the eye. Every time we

look through the eyehole we see a different pattern. And each eye of course that

looks through the viewer of the kaleidoscope interprets and responds differently to

the image. And in this way autism is revealed, to use the Burnett and Merchant

analogy, in all its Baroque glory. Autism appears not as a clear, agreed, predictable,

measurable and controllable biological condition but as a complex, diverse,

contested, dynamic, ephemeral, social reality and abstraction. Or as Davies (2016)

frames it, autism is revealed as a 'social and categorical phenomenon, identity

marker and shaper of human possibilities' (p.133).

This evening I want to stack some of these stories of autism to see what we can

learn from doing so about what has come to be called The Autism Wars and how

development of The Rights Approach for Autism might help us to navigate the

battlefields. And with the telling of each story we will turn the kaleidoscope. In doing

so we will open ourselves to the challenge of really reflecting on ways of

understanding autism that might be different and perhaps even in conflict with our

own. We will approach this in what Titchkosky (2011) calls a Politics of Wonder as

we anticipate the new meanings that may be revealed in the turns of the

kaleidoscope. We will not do this in an attempt to identify the one pattern that really

captures autism for if autism can be found at all then it will only be in the relationship

between all of the patterns and these, like truth itself, are legion.

These stories are important for Professors Dan Goodley and Katherine Runswick-

Cole (2012), in a wonderful article entitled Reading Rosie, stacked stories of autism

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to illustrate how different conceptualisations and understandings of autism result in

children and their families being conceived of and responded to very differently. And

Dr. Jill Smith (2016), from our very own Autism Centre has highlighted how the

stories of disabled children have been excluded within childhood research through

the normative and restrictive understandings of what constitutes 'voice' and a lack of

imagined possibilities for how stories might be still be told even if they are not voiced.

The very lives therefore of children with autism and their families are constructed,

constricted, bounded and disciplined through these stories and so that is why stories

demand our attention. Titchkosky (2007) warns us that in coming to know the social

world we should be careful to 'watch our watching, to read our readings' (p3,) and so

we must attend to these stories of autism and come to know the why, the how and

the what of those that we take up and reproduce ourselves and those we turn from.

And amongst these stories of autism I want also to add to some stories about me, for

these too are also woven through and by the stories of autism.

So what are some of these stories of autism. In Brazil autism has traditionally been

storied as a 'problem' of the mind that requires treatment through psychoanalysis

and psychiatry. But this story is now being challenged by new tales of neurological

difference and the assertion of rights (Ortega et al 2016). In Sweden autism is a

story of challenge to services to create opportunities for independent living and

employment (O'Dell et al 2016). In Turkey Autism is a neurobiologically induced

'abnormality' that results in stigma for children and their families (Yazgan 2015). In

Ethiopia and Nepal the story of stigma is told again as autism is framed as a curse

and a marker of the supernatural (Heys et al. 2016; Tilahun et al. 2016). In Somalia

there is no story of autism until children are born into the countries of the Global

North. And so location, environment and cultural practices are then revealed as

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critical to the creation and reception of these stories (Hewitt 2013; Miller-Gairy and

Saul, 2015). Another story told in Nepal is that autism results from lack of maternal

responsibility; mothers, as the fable goes, cause autism through neglect of

themselves during pregnancy or the 'over pampering' of children (Heys et al 2106).

And so the culpability of mothers is revealed to be a story of disability that

transcends borders for it is oft repeated across the Globe (Ryan and Runswick-Cole

2008; Yazgan 2015; Donvan and Zucker 2016).

In the Diagnostic and Statistical Manual of Mental Disorders version 5 ( DSM V), a

tool that influences diagnostic processes across the Global North, autism is a story

of deficit, of not being able to, of lack. A lack in social-emotional reciprocity, deficits

in nonverbal communication and deficits in developing, maintaining and

understanding relationships. Kim Davies (2016) suggests that our first collective

response whenever any child is framed in this way might be to exclaim 'How rude'

(p.144) as such a framing effectively 'authorises the dehumanisation of people with

autism' (p.144) by placing some people outside of the personal characteristics that

are said to be essential to being human, such as being empathic for example or

being social. Years after I had stopped working as a teacher in a special school for

children with autism the headteacher told me that I had changed practice in the

school by working with children in groups. The head teacher said that before I

arrived no one had thought to do group work with children with autism. But this was

not the result of any great innovation or creativity on my part. I arrived at the school

with an unchallenged assumption that learning was a collective and collaborative

process and I had not yet been inducted into the story of autism being only about the

individual. In our class we were a team. Life was always hectic, often chaotic but

never dull and we were always connected to each other. Our class story was about

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the pleasure and frustration we all encounter when as humans we work together. It

was not a story of deficit or lack.

Back in 1999 way ahead of the game Dr. Tony Attwood and Carol Gray restoried the

deficit account of autism that was captured then in what was the 4th version of the

DSM. They wonderfully and radically at the time critiqued these disabling framings

of Asperger Syndrome by declaring that people could only earn the right to be

discovered to be 'Aspie' if they could demonstrate that they meet such criteria as, the

ability to form peer relationships characterised by absolute loyalty and impeccable

dependability; demonstrate behaviours free of sexist, age-ist or cultural biases and

through being always prepared to accept others at face value.

And to this stack of stories of autism I add another. For me autism is a story of

challenge. It is a challenge to come to know and/or apply customary social rules and

practices if these are not made clear to you. It can be a challenge to access the

dominant communication system if this not the one that you use yourself and it can

be a challenge to adapt quickly to unexpected and enforced change when you had

something different planned.

In DSM 5 and even in Attwood and Gray's stories autism is a personal issue; it arises

out of the being of the individual. So this story is sometimes known as the individual

or medical model of disability. The problem with this story is that because autism is

located in the individual, responsibility for change is placed only on him or her alone

(Albrecht et al 2001). In my story of autism the focus of responsibility for the

breakdown in learning shifts from the individual to the environment. It is the barriers

of limited communication systems and changing the environment without warning

that become the problem. This is the story of the Social Model of Disability. So the

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stacking of these stories of autism starts to reveal a chasm between the framing of

autism within these two opposing models of disability. The rival camps are beginning

to emerge in the Autism War.

But let's break for a moment to hear a story about me. if you are a student of

phenomenology will know of Hallam's prestigious Emeritus Professor Peter Ashworth

around whom grew the Sheffield School of Lifeworld. Ashworth argues that all life

experience can be represented within a small number of cross cutting fractions

(Hodge 2008). One of these is temporality. So Ashworth argues that every event that

we experience will speak to the now, our past and our future. For example attending

this lecture may mean that some may decide never to go to another. It might prompt

others to remember their own inaugural lecture and feeling relieved that they did not

give this one. So every experience is linked by and through time. So how might a

story of the experiences of 4 year old Nick on his first day of school speak to the

Professor he was to become and to the nature and practice of autism.

At 4 I was perfectly presented, clearly never seen mud in my life, all tense and

contained, desperate to get it right, ready and prepared to be elected milk monitor.

Sadly the infant school I attended was not so well turned out. The school's previous

life had been as an RAF barracks in the war when Grantham, the town where I was

raised, was a target for German bombers. Thankfully for the RAF but regrettably for

me the bombs missed the school. Although not long after I left the school either fell

down or was put out of its misery by a developer as the one that is there now is shiny

and new. But in my time at the school the memories of conflict and hardship were

still imbued in and emanating from its walls, a bit like the hotel in The Shining. So, at

age 4 I found myself the next blond victim in the clutches of the psychopathic

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tormenter whom I was told to call teacher. On that first day at school another new

child sat opposite me. As she began to realise what fate had condemned us to, her

spirit broke and she began to cry. The teacher or Bates as I now think of her (as in

Psycho Bates not the poor forever wronged one from Downton), came over quickly

and slapped the girl on the arm. The only result of course was that the child in shock

and shame cried louder. Perhaps therefore it was this experience that led me many

years later to become fascinated by the behaviours of others and how those

challenged by these behaviours respond to them. Maybe one lesson that I was

taught that day was the importance of understanding why a behaviour occurs and to

think through the potential effects of the selected strategy on a behaviour before

applying it (Zarkowska and Clements 1994). As for me at age 4 I lent forward and

patted the girl's hand gently, a gesture of solidarity between captives. 'You have one

too then' snarled Bates and she slapped my arm. Bates then had two sobbing

children in her class. In spite of the previous failure of approach Bates had clearly

not yet learnt the importance of reflecting on her behaviour management strategies.

Whilst I was being slapped on the arm in Grantham in the United States other

children were experiencing even greater abuse. Lovaas and his team had turned the

slap into an art form or as they called it Applied Behaviour Analysis which they

developed into an autism intervention. Now here I want to digress for a moment.

Katherine Runswick-Cole and I (2009) have written about how in Education words

matter because what we call things or how we name people have very significant

effects on how we think about them and what we do with or to them. How people are

represented through the words used by others to categorise them impacts on their

permitted possibilities. So what might be some of the troubling effects of the term

'intervention'? The first alarm bell is that it is only used in relation to children and

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young people with special educational needs and disabilities. Instead of interventions

the development of non disabled children is simply enabled through the curriculum

and lessons. So intervention is an 'othering' term, a marker of difference that places

one outside of the category of regular and into special. One definition in the Oxford

English Dictionary is that an intervention is an action to improve a medical disorder.

Well now disorder is another problematic word of course but time compels me also

to leave that one for now. Although this pains me to do so for Ahmed (2015) speaks

of the need always to confront language that marginalises, devalues and excludes.

But Ahmed warns that speaking out can be costly. In naming the problem you

become the problem. And I am reminded of the mother in my doctoral research

(2006) who was thanked for pointing out disablist practices in her son's school by

teachers turning their backs on her in the playground whenever she dropped off and

picked up her child. The muffle of teachers' backs that shuts down reflection, enquiry

and debate painfully illustrates what Freire (1970) called the culture of silence . Dr.

Sami Timimi once said that the dominant faction of the autism community adopts

this very same strategy to suppress the challenge of other theoretical perspectives

that advocate new understandings - it turns its back and ignores them. In the culture

of silence new ways of understanding are smothered. And that is why I work within

and support the emergent paradigm of Critical Autism Studies where critique,

debate, challenge and change are welcomed and celebrated.

But to return to intervention. Within the very same dictionary there is a different

definition of the term that for me perfectly problematises its nature. Intervention is

defined as interference by a nation state in another's affairs. Dr. China Mills (2014)

uses the most chilling of metaphors in support of her argument against the peddling

of psychotropic drugs by the Global North to the children of the Global South. To

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quote Mills 'as psychotropic drugs enter children’s bodies they may well be one of

the deepest and most intrusive forms of colonisation'. And in this same insidious

way, masked as an act of rescue or care some interventions that seek to change the

fundamentals of a child's being colonise children with autism in the name of

normalcy and in doing so breaches their fundamental right to protection of their own

identities.

To illustrate this process of colonisation at work let us go back to Lovaas and the

slap. At http://neurodiversity.com/library_screams_1965.html you will find pictures

that you may find upsetting. I do too but we need to pay attention to them, to look

beyond the visible wavelengths of light that deliver the image to locate and critique

the stories of autism within. These pictures come from 1965 from a prized spread in

Life Magazine that was read by millions across a number of countries. The article

was entitled Screams, Slaps and Love and the tag line read 'A surprising and

shocking treatment helps far-gone mental cripples'. The term shocking was used as

in addition to pictures of children being abused through screams and slaps there

were also images of Pamela who because she drifted off in lessons was punished

with electric shocks. So in this article although the representations of screams, slaps

and shocks are vivid and unavoidable to date I still fail to locate the love.

In one picture a boy, Billy, just 7 years of age whose body appears to me to be rigid

with fear is seated, trapped directly in front of a man who is also seated. The man's

face is contorted as though in rage and he is yelling right into the face of the child.

The man's hand is raised and in a second picture we can see that hand brought

forcibly to slap the poor child on the side of his head. And what did Billy do to warrant

this brutality - his attention appeared to wander in his speech lesson. Perhaps fear

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stultified all thought. And in a third picture we can see in Billy's tears and distress that

these attacks on his being do not open him up in any way for learning. When I look

at these pictures I wonder why the man, Bernard Perloff from the University of

California in Los Angeles and his colleagues are not shamed by their acts. The focus

of the article is on what this approach does to and for the disabled child. But in this

presentation in carrying out what Campbell (2009) calls the project of ableism, I am

turning the gaze away from Billy and his behaviour and onto Bernard. I am asking

what cultural and social forces are at play that permit and encourage Bernard to feel

that carrying out what would be termed abuse for a 'normal' child is a legitimate act

of love in relation to 'the autistic'. This is what Hughes, Goodley and Davis (2012)

describe as the ability of theory to shift 'our focus away from the perceived

pathologies of disabled people on to the deficiencies of a disabling society and an

ableist culture' (p.4).

So instead of asking why Billy's attention wandered and how effectively does the

yelling and slap restore it I turn my attention to Bernard and Lovaas to ask why they

might have embraced this opportunity to share their intervention with the world, their

method for helping 'the patient', the far gone cripple. And it is this word perhaps that

elucidates what is at play here for as I said earlier language matters and we need to

pay attention to it. The act that we witness here is not being done to a child; it is

enacted upon a different type of being and one that has been positioned outside of

the human, the cripple. Freire in 1970 wrote that 'the more the oppressors control the

oppressed, the more they change them into apparently inanimate "things" (p.41). So

for Billy to claim his humanity and his rights he must be moved towards 'normal', far

enough to be recognised as a 'normal' child. And through this process in much the

same way as Mallett and Runswick-Cole (2012) argue autism has become

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commodified, so too normal is reified into 'thing like form' and fetishised; 'produced,

traded and consumed' within the industry of child development (p. 33).

Those of you who have chosen Applied Behaviour Analysis as a preferred form of

learning for children with autism if you have not left already will be groaning inside.

This was years ago you will cry and ABA has moved on. Get up to date Hodge. But

the practices of today are written on the scripts of our past and, just like the act of

scraping off black crayon to find the colours below its surface, if you were to rub out

the ink of current engagement with people with autism you would find the stories of

Lovaas and Billy still writ large. Look carefully and you can see the spirit of Billy in

this picture (http://www.dailymail.co.uk/news/article-2744571/Strapped-locked-

Shocking-photos-reveal-disabled-children-treated-Australian-schools.html). Another

child restrained in a chair, unable to move, another child who may need support with

learning to trust the touch of others but at school is experiencing this as

predominantly dominant and restrictive. But this picture is not from 1965. It is from

2016, from a school in Australia.

Now if you have a young child who is in the process of having a diagnosis of autism

or who has recently been diagnosed, do not panic. I am deliberately selecting here

sensational examples of engagement with children to highlight and make a point

about the different fundamental conceptualisations of autism that underlie practice.

There are many more examples of wonderful welcoming and creative practice from

our mainstream and special schools, so do not be alarmed.

But I want to return for a moment to that photo from 1965 to Lovaas and to ABA. For

this is where I locate the origins of The Autism War and the emergence of two camps

on either side of a paradigmal fault line. I first came across the term 'the autism wars'

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in the synopsis of Todd Drezner's (2011) film Loving Lampposts in which he explores

and critiques the range of educational and medical options open to his young autistic

son. Since then the concept of the autism wars has appeared in different texts. See

Ortega et al (2016) for example. When I refer to The Autism War as opposed to wars

I am referring to the fundamental divide in how autism is understood. So what

Drezner describes as the two camps of the recovery movement vs the neurodiversity

movement. The two key opposing constructions of autism that underpin this division

first emerged in the 1960s. In one camp are those who think of Autism as a tragedy,

the work of the child snatcher where the only hope for the child and for the family is

for the child to be snatched back by medicine and pseudo-medical practices and

reconstructed in as normal a form as possible. This conceptualisation is represented

in this by Ivar Lovaas and ABA . The other camp can be represented by Eric

Schopler and Division TEACCH. The focus of Autism shifts here from the notion of

the disordered, deficit, problem child and on to the modification of the physical,

social, cultural and economic environments to better accommodate the way of being

that has come to be termed autistic. Perhaps I put this distinction crudely. But the

sharp relief of the image of the two camps for me highlights most effectively the point

I want to make. Because I want all of us involved in autism to at least recognise

these two camps, to know that the way that we understand autism is not the only

way and to identify into which camp we have positioned ourselves, to know why and

to understand what this means for children with autism and their families. I want us

to have watched our watching and read our readings. This culture of silence and the

chasm between the two camps is beautifully captured by the example of the Autism

Speaks march at Ohio State Campus (ASAN 2010). Autism Speaks the organisation

that broadly represents 'the child needs to be changed and we need to raise funds to

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stop more children with autism from being born' camp, organised a major fund

raising march in the name of people with autism. Along the side of the march was a

protest from autistic people themselves and their allies, representing the 'it's the

environment that needs to change' camp. Autism speaks does not speak for me they

cry. We want funds to let us live, not to eradicate our community from the earth but

to enable our autonomy, to enable us to live independently or in the communities of

our choosing; we want schools to be constructed with consideration of our

requirements rather than for them to be poorly adapted under duress to squeeze us

in; we want to secure occupation in life that fulfils and rewards us; we want to speak

for ourselves and we want to be heard; we want to be respected and to live with

dignity, free from torture and harm. We are claiming our rights. But Autism Speaks

just marched on and these cries fell to earth like banners of protest left behind..

So in this protest we see the nub of the problem. Rights are an essential mechanism

by which those made vulnerable by others can protect their entitlements as humans.

But rights are only activated if the dominant group recognises first the humanity of

those made marginal and then acknowledges its corresponding duties to protect

these rights. Gibson (2015) argues that the rights agenda in education has failed

because even after a raft of legislation including the Disability Discrimination Act

(1995), Special Educational Needs and Disability Act (2001), Disability Equality Duty

Act (2006), Equality Act (2010) and now the Children and Families Act (2014)

disabled people still remain among the most disadvantaged, economically, socially,

politically and educationally. This, argues Gibson, is because the rights agenda has

failed to, using Slee and Cook's (1999) phrasing, win the political struggle between

cultures of difference. Ableism and normalcy, the twin evils that decide some bodies

have more value than others and that your body has to look and behave a certain

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way to be deemed acceptable, still control the cultural norms that construct schools

as being really for a particular type of pupil and, only if compelled to by legislation,

will some schools make even the minimum of adjustments to environment and

practice to accommodate the unexpected and undesired pupil (Davis 1995;

Campbell 2009). If the placement fails well then that of course is the fault of the child

because of her or his impairment. Gibson calls disability here the get out of jail card

as it excuses schools from any responsibility for a breakdown in learning.

But I am not yet ready to give up on rights. So my current work is now focused on

enabling the promotion in education and other settings of the UN Convention on the

Rights of Persons with Disabilities or the CRPD as it is commonly referred to within

the research literature (UN 2006). At a time when the protection of human rights is

increasingly under attack the UN Convention is now more important than ever before

.The primary intention of the Convention is to liberate disabled people from being

objects of charity and enable them to claim the status of full and equal members of

society. The Convention came into force in 2008. It has now been ratified, which

then makes it legally binding, by 168 countries. Unfortunately the UK has the shame

of being the first member state to be investigated for breaching its duties under the

Convention. The UN has found that the UK Government's sustained attack on

disabled people through its economic policies has resulted in 'grave and systematic

violations' of disabled people's rights (BBC 2016). A claim rejected by the

Government on the grounds that the UN has adopted a concept of disability that is

'patronising and offensive'. But you only have to look at the 60 stories on Calum's

page on the internet (Calum's List 2016) of lives ended in despair over the loss of

what really are just survival benefits to know that for many the actions of the

Government have taken even hope itself away from disabled people. So the right to

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life itself for disabled people, yet again is, as it always has been, under attack. From

the disabled babies left to die in ancient Sparta to save them from, as it was claimed,

the burden of their own tragic existence and the state the burden of their care,

through T4 the Third Reich's programme for the 'destruction of worthless animals', by

which was meant disabled people, whose lives were deemed to be without value, life

not worthy of life. And on to now, to the 2500 who in spite of the policy of

Transforming Care are left trapped in mammoth and still expanding so called care

provision where as described by Norman Lamb some are treated more akin to

animals than humans, treated as second class citizens and denied their rights (Lamb

2017) and to the death by indifference of 18 year old Connor Sparrowhawk, LB, and

the other 1,200 people with learning difficulties who die each year because their lives

are held to matter less.

So the CRPD is important first and foremost because it asserts the human status of

disabled people. Secondly it is important because it makes of primary concern the

protection of the dignity of disabled people. I suggest therefore that in navigating our

way through the battlefields of The Autism War we should use the CRPD as our

guide. We should evaluate any educational or other approach against the

fundamental principles. To what extent does this practice protect the dignity,

personhood and sense of worth of this person? What choice do they have over

participation in this and what does their language or behaviour reveal about the

meanings that they make of it? And does this practice recognise and protect the

identity and evolving capacities of this child - does it accept the child for who he or

she is or does it seek to modify the fundamentals of their being? Helping someone to

develop is right and proper. Denying someone's right to be is not.

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Conclusion

So in conclusion, I have written of the critical importance and value of naming

autism and critiquing what is produced and enacted in its name. I have drawn

attention to the multiplicity of positions in relation to autism which I have themed into

two main and opposing camps and which I have argued are at war. And I have

called upon us all to reflect on which side we stand. For some readers, this

discussion may not have been what they hoped for. They may have yet again been

seeking the answer to the 'problem' of autism and will once again feel that they they

have not located it here. But I make no apology for taking the time to reflect on the

concept of autism itself, what it is and what it does. Hughes, Goodley and Davis

(2012) in defence of the role of theory within the emancipation of disabled people

argue that theory 'can change everyday norms, social policies, institutional

arrangements, professional acts, family practices and personal values, because

when social theory works at its best it demands us to reconsider the assumptions,

discourses and taken-for-granted ideologies that undergird the exclusion of some

people and the accentuation of the social roles of others'. (p.2) And in this

presentation by stacking stories of autism 52 years after the emergence of Lovaas's

work I have attempted to trouble and disrupt the messages of autism endorsed by

Life magazine and presented as the truth to the world. Like a drawing in reverse I

have scratched off the colourful coverings of the rescue of children with autism

claimed by some current interventions and revealed the black forces of ableism,

disabilism and diminishment that undergird them.

Before I began constructing this presentation I thought war was necessarily bad and

that my argument would be that we should work to end it. But as my fingers have

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typed and I have read the words on my page I have come to recognise that concern

for the war distracted me from the insidious presence of another, even more

powerful force at play. Silence. War requires us to recognise our own oppression

and to name and know our oppressor. War demands engagement, attack, defence

of position, the taking and the giving of ground. For Freire (1970) '(h)uman existence

cannot be silent…To exist, humanly, is to name the world' (p.69). And for Freire you

cannot name the world without changing it. So within The Autism War, Autism is

named and in so doing this brings change to the world of autism. It is silence

therefore that I now see as the greater enemy. And in my future work I want to

disrupt silence through debate. And I hope that readers, if the time has not passed

and if they have access to twitter, will debate ideas emerging from this presentation

on March 21st 2017 6-7pm using #DebateAutism. I want schools to become sites of

critical engagement with the nature and enactment of disability rights. And within

these debates I want the loudest voices to be those of pupils labelled as having

SEND including a broad representation of voices and not just those who will say

what settings want to hear. The stories of children and young people with autism and

other disabled young people need to be stacked. And, as with each turn of the

kaleidoscope, each new reading of a story will reveal fresh manifestations of

marginalisation and exclusion but also the talents and aspirations of disabled

children through which they will confront, trouble and resist the practices that seek to

denigrate and contain them. And to aid our children, we must arm them and their

weapons will be their rights. And so in our homes, our education, health and care

settings and everywhere that children with autism might find themselves we must all

pledge to :

Recognise the humanity of children with autism

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Commit to knowing children's rights within the CRPD

Continually reflect on, assess and debate practice in relation to the protection

of those rights

Value children for who they are and support them to be the best 'me' that they

can be

Protect the right of children to participate in the construction of their own lives

Learn to listen to and observe the meanings children make of their experience

Protect the dignity and equal worth of children at all times

Protect children from the violence of intrusive interventions, bullying and

abuse

For this is and has to be The Rights Approach for Autism.

References

Abdi, M. (2017) Stories that make up who we are (not): How children and young

people navigate their lives through stories. Sheffield Institute of Education Blog.

Accessed at https://blogs.shu.ac.uk/sioe/2017/02/23/stories-that-make-up-who-

we-are-not-how-children-and-young-people-navigate-their-lives-through-

stories/

Ahmed, S. (2015) Introduction: sexism - a problem with a name. New Formations 86:

5–13

Albrecht, G., Seelman, K.D., and Bury, M. (2001) 'Introduction: the formulation of

Disability Studies' in G. Albrecht, K.D. Seeman and M. Bury (eds) Handbook of

Disability Studies. London: Sage pp. 1-10

19

ASAN (2010) Protest against autism speaks in Columbus.

http://asancentralohio.blogspot.co.uk/2010/10/protest-against-autism-speaks-in.html

Attwood, T. and Gray, C (1999) The Discovery of "Aspie" Criteria. The Morning

News 11 (3). available at http://www.tonyattwood.com.au/index.php?

option=com_content&view=article&id=79%3Athe-discovery-of-aspie-criteria

BBC (2016) UN: 'Grave' disability rights violations under UK reforms 7 November

2016 http://www.bbc.co.uk/news/uk-37899305

Burnett, C, and Merchant, G. (2016) Boxes of poison: Baroque technique as antidote

to simple views of literacy. Journal of Literacy Research 48(3): 258-279

Calum's List (2016) http://calumslist.org/

Campbell, F.K. (2009) Contours of Ableism: the production of disability and

abledness. Basingstoke: Palgrave Macmillan

Davies, K. (2016) 'How Rude? Autism as a study in ability' in in K. Runswick-Cole, R.

Mallett and S. Timimi (eds) Re-thinking autism: diagnosis, identity and equality.

London: Jessica Kingsley pp132-145

Davis, L. J. 1995. Enforcing Normalcy. London: Verso.

Donvan, J. and Zucker, C. (2016) In a different key. London: Allen Lane.

DSM V criteria accessed at

https://www.autismspeaks.org/what-autism/diagnosis/dsm-5-diagnostic-criteria

Drezner, T. (2011) Loving Lampposts: Living Autistic. DVD. Cinema Libre Studio

20

Fearns, D. (2007) Death by indifference. British Journal of Nursing 16 (11): 642

Freire, P. (1970) Pedagogy of the oppressed. New York: Herder and Herder

Gibson, S. (2015) When rights are not enough. What is? Moving towards new

pedagogy for inclusive education within UK universities. International Journal of

Inclusive Education 19(8): 875-886 

Goodley, D., Hughes, B. and Davis, L. (2012) ' Introducing Disability and Social

Theory' Disability and Social Theory. Basingstoke: Palgrave Macmillan 1-17

Goodley, D. and Runswick-Cole, K. (2012) Reading Rosie: The postmodern disabled

child. Educational & Child Psychology 29 (2): 53-66

Hewitt A. (2013) Minneapolis Somali Autism Spectrum Disorder Prevalence Project.

Accessed at http://rtc.umn.edu/autism/#project_docs

Hodge, N. (2006) Disabling families: How Parents Experience the Process of Diagnosing Autism Spectrum Disorders. EdD Thesis. Sheffield Hallam University

Hodge, N. (2008). Evaluating Lifeworld as an emancipatory methodology. Disability

& Society 23(1): 29-40.

Life Magazine (1965) Screams, slaps and love: A surprising and shocking treatment

helps far-gone mental cripples. Accessed at

http://neurodiversity.com/library_screams_1965.html

Heys, M., Alexander, A., Medeiros, E., Tumbahangphe, K. M., Gibbons, F.,

Shrestha, R., Manandhar, M., Wickenden, M., Shrestha, M., Costello, A.,

21

Manandhar, D., Pellicano, E. (2016) Understanding parents’ and professionals’

knowledge and awareness of autism in Nepal. Autism. 1-14

Mills, C. (2014) Psychotropic Childhoods: Global Mental

Health and Pharmaceutical Children. Children & Society, 28: 194-204

Lamb, N. (2017) Under lock and key. Dispatches. Channel 4. Wednesday March 1st.

Mallet, R. & Runswick-Cole, K. (2012) 'Commodifying Autism: The Cultural Contexts

of ‘Disability’ in the Academy' in D. Goodley, B. Hughes and L. Davis (eds) Disability

and Social Theory. Basingstoke: Palgrave Macmillan 33-52

Miller-Gairy, S.; Mofya, S., (2015) Elements of culture and tradition that shape the

perceptions and expectations of Somali refugee mothers about autism International

Journal of Child and Adolescent Health 8(3) : 335-349

Milton, D.E.M. and Bracher, M (2013) Autistics speak but are they heard? Medical

Sociology 7(2): 61-69. Accessed at

http://www.medicalsociologyonline.org/resources/Vol7Iss2/MSo_7.2_Autistics-

speak-but-are-they-heard_Milton-and-Bracher.pdf

NAS (2106) Too Much Information: The Autism Employment Gap. The Guardian,

Oct 27. https://www.theguardian.com/tmi/2016/oct/27/11-shocking-statistics-about-

autism-and-employment

O'Dell, L., Bertilsdotter Rosqvist, H., Ortega, F., Brownlow, C. and Orsini, M. (2016)

Critical autism studies: exploring epistemic dialogues and intersections, challenging

dominant understandings of autism. Disability & Society 31(9): 166-179.

22

Ortega, F., Zorzanelli, R. and Rios, C. (2016) 'The biopolitics of autism in Brazil'. in

K. Runswick-Cole, R. Mallett and S. Timimi (eds) Re-thinking autism: diagnosis,

identity and equality. London: Jessica Kingsley

Runswick-Cole, K. and Hodge, N. (2009) Needs or rights? A challenge to the

discourse of special education. British Journal of Special Education 36(4): 198-203b

Ryan S., Runswick-Cole K.A. 2008. "Repositioning Mothers: Mothers, Disabled

Children and Disability Studies" Disability and Society 23(3): 199-210

Seeman, M.V. (2005) Psychiatry in the Nazi era. Canadian Journal of Psychiatry 50

(4): 218-225

Smith, J.C. (2016) The embodied becoming of autism and childhood: a storytelling

methodology, Disability & Society 31(2):180-191

Tilahun D, Hanlon C, Fekadu A, Tekola B, Baheretibeb Y, Hoekstra RA (2016)

Stigma, explanatory models and unmet needs of caregivers of children with

developmental disorders in a low-income African country: a cross-sectional facility-

based survey. BMC Health Services Research 16: 152.

Titchkosky, T. (2007) Reading & writing disability differently: the textured life of

embodiment. Toronto: University of Toronto Press.

Titchkosky T. (2011) The question of access: disability, space, meaning. Toronto,

University of Toronto Press.

United Nations (UN) (2006) Convention on the Rights of Persons with Disabilities

Accessed at: www.un.org/disabilities/.

23

Yazgan, Y. (2015) 'Turkey and Autism', in F.R. Volkman (ed) Encyclopedia of Autism

Spectrum Disorders. New York: Springer pp 1-4.

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