families coping with autism: trials and triumphs

Families Coping with Families Coping with Autism: Trials and Triumphs Autism: Trials and Triumphs

The Watson Institute The Watson Institute Julie Knapp, PhD Julie Knapp, PhD

Lindsy Yarger, MA Lindsy Yarger, MA Joyce Giovannelli, PhDJoyce Giovannelli, PhDNicole Jarock, M.A.T.Nicole Jarock, M.A.T.

Agenda Agenda

Trials on the Family Chronic Stress Childrearing Issues Demands on Parents’ Time Marital Intimacy Marital Relationships Siblings

Agenda Agenda

Stages of Grief and LossElizabeth Kubler Ross literature

The Typology Model of Family Adjustment and Adaptation (Coping Mechanisms)

Family Recommendations for Coping with Stress

Positive Aspects of having a Child with ASD Personal Stories of How Autism affected One

Parent’s Life

Workshop GoalsWorkshop Goals

To normalize the experience of living with To normalize the experience of living with chronic stress chronic stress

To normalize the feelings of guilt, anger, To normalize the feelings of guilt, anger, and depression and depression

Learn to celebrate the accomplishments of Learn to celebrate the accomplishments of a child with ASD a child with ASD

To identify adaptation and adjustment To identify adaptation and adjustment strategies to conquer the stress associated strategies to conquer the stress associated with raising a child with ASDwith raising a child with ASD

Families Raising a ChildFamilies Raising a Childwith Autismwith Autism

CDC Study (2007): CDC Study (2007): 1/150 children with ASD1/150 children with ASD 1/94 Males with ASD1/94 Males with ASD 1 child diagnosed every 20 minutes1 child diagnosed every 20 minutes

Increase in DiagnosisIncrease in Diagnosisin PAin PA

Research Study /Research Study /Trials on the FamilyTrials on the Family

Purpose - better understand the Purpose - better understand the

relationship of autism and family stressrelationship of autism and family stress Participants: Participants:

Parents raising a child with ASD, received Parents raising a child with ASD, received services at The Watson Instituteservices at The Watson Institute

Parents of typical developing children, attended Parents of typical developing children, attended two local daycare centers in Pittsburgh, PAtwo local daycare centers in Pittsburgh, PA

Marital Satisfaction Inventory, Revised Marital Satisfaction Inventory, Revised Family Assessment Measure, Version ThreeFamily Assessment Measure, Version Three

Study ParticipantsStudy Participants

127 parents participated in study127 parents participated in study 37 families raising a child with ASD37 families raising a child with ASD 28 families raising typical developing 28 families raising typical developing

childrenchildren

Ages ranged from 28 to 53 yearsAges ranged from 28 to 53 years Ages of the children ranged from 3-12 Ages of the children ranged from 3-12

yearsyears

Results of StudyResults of Study

Parents of children with ASD reported higher levels Parents of children with ASD reported higher levels of stress within a marriage of stress within a marriage

Parents of children with ASD reported greater Parents of children with ASD reported greater conflict over child rearing. conflict over child rearing. Disagreements with spouse over treatment, handling Disagreements with spouse over treatment, handling

behaviors, school interventions, etc.behaviors, school interventions, etc.

Parents of children with ASD scored significantly Parents of children with ASD scored significantly higher on the Dissatisfaction with Children higher on the Dissatisfaction with Children subscale, indicating greater dissatisfaction with subscale, indicating greater dissatisfaction with their children.their children.


Parents raising a child with ASD Parents raising a child with ASD reported dissatisfaction regarding reported dissatisfaction regarding lack of shared leisure activities as a lack of shared leisure activities as a familyfamily

Parents of children with ASD reported Parents of children with ASD reported higher sexual dissatisfactionhigher sexual dissatisfaction


Overall, parents raising a child with Overall, parents raising a child with ASD reported greater marital ASD reported greater marital dissatisfaction dissatisfaction

Relying on one’s partner for support Relying on one’s partner for support when that partner is also in crisis and when that partner is also in crisis and needing support can place a needing support can place a “enormous burden on the marriage”“enormous burden on the marriage”

Chronic LossesChronic Losses

Think there is Think there is something something “different” about “different” about your child.your child.

Family members Family members and friends reassure and friends reassure you that you should you that you should wait, your child will wait, your child will catch upcatch up

Sense of being Sense of being misunderstoodmisunderstood

Sense that others Sense that others do not believe youdo not believe you

Loss of self-Loss of self-confidence as a confidence as a parentparent


A professional A professional diagnosing your diagnosing your child with autismchild with autism

Child begins to Child begins to receive receive wraparound wraparound services, multiple services, multiple treatmenttreatment

Confirmation / Confirmation / Learning your childLearning your childis not developing is not developing typically typically

Privacy, Personal Privacy, Personal time, Time for time, Time for marriage, Time for marriage, Time for other childrenother children


Family, friends, Family, friends, neighbors neighbors withdrawal – may withdrawal – may avoid their children avoid their children interacting with youinteracting with you

Arguments, Arguments, breakdown in breakdown in marriagemarriage

Loss of support Loss of support systemsystem

Loss of sense of Loss of sense of team within team within marriagemarriage

Autism Autism

and Siblingsand Siblings

Why Professionals Care about Why Professionals Care about Sibling RelationshipsSibling Relationships

Cognitive skillsCognitive skills Affective skillsAffective skills Social skillsSocial skills Self-ImageSelf-Image

The Sibling Relationship The Sibling Relationship with ASDwith ASD

““It is important to recognize the It is important to recognize the differencedifference

between normal frustration of between normal frustration of childhood andchildhood and

the special impact of having the special impact of having

a sibling with autism.” a sibling with autism.”

(Harris 13)(Harris 13)

Reported Negative Outcomes Reported Negative Outcomes

for Siblings of Children with for Siblings of Children with ASDASD

AngerAnger Loneliness Loneliness Feelings of guilt or embarrassmentFeelings of guilt or embarrassment Hassles with their siblings’ behavior Hassles with their siblings’ behavior Externalizing and internalizing behavior problemsExternalizing and internalizing behavior problems DepressionDepression Shift in family rolesShift in family roles Poor social reciprocity between siblingsPoor social reciprocity between siblings

Factors Contributing Factors Contributing Outcomes for SiblingsOutcomes for Siblings

Parental stressParental stress Marital satisfactionMarital satisfaction Parental expectationsParental expectations

Stages of Stages of

Grief and LossGrief and Loss

Grief and Loss (Kubler-Ross)Grief and Loss (Kubler-Ross)

DenialDenial Anger Anger BargainingBargaining DepressionDepression AcceptanceAcceptance

Grief and Loss / DenialGrief and Loss / Denial

Shock Shock NumbnessNumbness ConfusedConfused DazedDazed BewilderedBewildered Detached from Detached from

realityreality Belief child is Belief child is

misdiagnosedmisdiagnosed

Gives parents Gives parents

time to find their time to find their inner strength to inner strength to deal with the deal with the painful feelingspainful feelings

Grief and Loss / AngerGrief and Loss / Anger

““Why did this happen to my family?”Why did this happen to my family?” Resent parents of typical developing Resent parents of typical developing

childrenchildren Anger toward self, partner, God, Anger toward self, partner, God,

professionalsprofessionals

Grief and Loss / BargainingGrief and Loss / Bargaining

Seek multiple opinionsSeek multiple opinions ““Shop around” for other or no Shop around” for other or no

diagnosisdiagnosis

Grief and Loss / DepressionGrief and Loss / Depression

As many as one third of the mothers raising a As many as one third of the mothers raising a child with autism exhibit depressive child with autism exhibit depressive symptomssymptoms

Difficulty connecting with childDifficulty connecting with child May not perform daily tasksMay not perform daily tasks Disturbed sleepDisturbed sleep Chronic tiredness, fatigueChronic tiredness, fatigue Difficulty making daily decisionsDifficulty making daily decisions Physical symptomsPhysical symptoms

Grief and Loss / AcceptanceGrief and Loss / Acceptance““We mourn the loss of the child we anticipatedWe mourn the loss of the child we anticipatedwho suddenly vanished from our lives, the childwho suddenly vanished from our lives, the childwho slipped through our hands before we had awho slipped through our hands before we had achance to know him or her, the one who quietlychance to know him or her, the one who quietlydisappeared through the crowd, never to be found.disappeared through the crowd, never to be found.This mourning process, which I imagine to be similar tThis mourning process, which I imagine to be similar tto experiencing a miscarriage or premature death of to experiencing a miscarriage or premature death of

aachild, is a necessary step before we can move on andchild, is a necessary step before we can move on andbegin to accept our disabled children into our lives.”begin to accept our disabled children into our lives.”(Carter, 2004, p. 182) (Carter, 2004, p. 182)

Family Adjustment Family Adjustment and Adaptation and Adaptation

Family Adjustment and Family Adjustment and Adaptation Adaptation

Impact on the family system Impact on the family system Family patterns and interactions Family patterns and interactions Family coping mechanisms Family coping mechanisms Adjusting and adapting Adjusting and adapting

The Typology Model of Family The Typology Model of Family Adjustment and AdaptationAdjustment and Adaptation

TMFAA: TMFAA: - Strengths - Strengths - Resources - Resources - Coping mechanisms - Coping mechanisms

Role of these attributesRole of these attributes

TMFAATMFAA

TMFAA model is comprised of two phases:TMFAA model is comprised of two phases:

1.) Adjustment Phase: typically a short-1.) Adjustment Phase: typically a short-term response that the family term response that the family experiences. experiences.

2.) Adaptation Phase: Long term response 2.) Adaptation Phase: Long term response of the family of the family

Adjustment Phase Adjustment Phase

Severity of the Stressor Severity of the Stressor Family’s Vulnerabilities Family’s Vulnerabilities Family’s Type Family’s Type Resistant Resources Resistant Resources Appraisal of the Event Appraisal of the Event Family’s Problem Solving Capabilities Family’s Problem Solving Capabilities

Interaction of these Interaction of these Variables Variables

The way in which these factors interact The way in which these factors interact will determine how well the family adjusts will determine how well the family adjusts to the crisis situation and if or when the to the crisis situation and if or when the family members will move onto the next family members will move onto the next phase of the TMFAAphase of the TMFAA

In the adjustment phase, the dimensions In the adjustment phase, the dimensions and levels of the factors play a role in and levels of the factors play a role in determining the family’s adjustment to the determining the family’s adjustment to the crisis situationcrisis situation

Adaptation Phase Adaptation Phase

Number of demands placed on the family Number of demands placed on the family system system

Typology of the Family Typology of the Family Strengths of the Family Strengths of the Family Situational Appraisal Situational Appraisal Family Schema Family Schema Social Support Social Support Problem Solving and Coping Skills Problem Solving and Coping Skills

Ineffective Coping SkillsIneffective Coping Skills

AvoidanceAvoidance IsolationIsolation WithdrawalWithdrawal Self-CriticismSelf-Criticism Blaming self or othersBlaming self or others Wishful ThinkingWishful Thinking ResignationResignation

Positive Coping SkillsPositive Coping Skills

Exercise and nutritionExercise and nutrition Psycho-Educational - Seek Psycho-Educational - Seek

information on the perceived information on the perceived problemproblem

Plan time for relaxation as a familyPlan time for relaxation as a family Rely on social supportsRely on social supports

Positive Coping SkillsPositive Coping Skills

Finding humor in a given situationFinding humor in a given situation Parents need to schedule time to be Parents need to schedule time to be

together without the children!together without the children! Create a plan for childrearing (share Create a plan for childrearing (share

responsibilities, share supervision)responsibilities, share supervision) PsychotherapyPsychotherapy Support GroupsSupport Groups Respite CareRespite Care

Positive Coping Positive Coping MechanismsMechanismsfor Siblingsfor Siblings

Create a safe havenCreate a safe haven Allow time for sibling to nurture Allow time for sibling to nurture

hobbies and skillshobbies and skills Spend 1:1 time with typical siblingSpend 1:1 time with typical sibling Provide age-appropriate information Provide age-appropriate information

on autismon autism

Strengths in Strengths in Children with AutismChildren with Autism

Gross motor skillsGross motor skills Nonverbal intelligenceNonverbal intelligence Rote memoryRote memory Ability to make associations quickly,Ability to make associations quickly, Ability to follow routinesAbility to follow routines Appreciation for order and routineAppreciation for order and routine Specialized talents including music, Specialized talents including music,

calculating numbers, and drawing calculating numbers, and drawing

Positive Aspects of Parenting Positive Aspects of Parenting a child with an Autism Spectrum a child with an Autism Spectrum

DisorderDisorder

Welcome to Holland!Welcome to Holland!

Beyond Beyond Stages of GriefStages of Grief

Kubler-Ross discussed five stages Kubler-Ross discussed five stages that characterize people’s reactions that characterize people’s reactions to loss and grief. to loss and grief.

Research (Poyadue, 1993) suggests Research (Poyadue, 1993) suggests that there is a sixth stage for parents that there is a sixth stage for parents of children with disabilities: the of children with disabilities: the appreciation or “all right” stage.appreciation or “all right” stage.

How to reach the How to reach the “all right” stage“all right” stage

1) The need to form new identities1) The need to form new identities 2) Attempts to derive meaning from 2) Attempts to derive meaning from

the situationthe situation 3) The development of a sense of 3) The development of a sense of

personal controlpersonal control

What are the Positives?What are the Positives?

Learning new coping skills and Learning new coping skills and resources (Schafer & Coleman (1992)resources (Schafer & Coleman (1992)


Perception of growth related to stress Perception of growth related to stress (Nolen-Hoeksema & Larson 1999)(Nolen-Hoeksema & Larson 1999)


Gupta & Singhal (2004) have listed 14Gupta & Singhal (2004) have listed 14

positives to raising a child with a positives to raising a child with a disability:disability:

1. Pleasure/satisfaction in providing care 1. Pleasure/satisfaction in providing care for the childfor the child

2. Child as a source of joy/happiness2. Child as a source of joy/happiness


3. Sense of accomplishment in having done one’s 3. Sense of accomplishment in having done one’s best for the childbest for the child

4. Sharing love with the child4. Sharing love with the child

5. Child providing a challenge or opportunity to 5. Child providing a challenge or opportunity to learn and developlearn and develop

6. Strengthened family and/or marriage6. Strengthened family and/or marriage

7. Giving a increased sense of purpose in life7. Giving a increased sense of purpose in life


8.Development of new skills, abilities, or new 8.Development of new skills, abilities, or new career opportunitiescareer opportunities

9. Becoming a better person (more 9. Becoming a better person (more compassionate, less selfish, more tolerant)compassionate, less selfish, more tolerant)

10. Increased personal strength or confidence10. Increased personal strength or confidence

11. Expanded social/community networks11. Expanded social/community networks


12. Increased Spirituality12. Increased Spirituality

13. Changed perspective on life (e.g., 13. Changed perspective on life (e.g., clarified what is important in life, clarified what is important in life, more aware of the future)more aware of the future)

14. Making the most of each day and 14. Making the most of each day and living life at a slower paceliving life at a slower pace

New RolesNew Roles

Many parents find meaning throughMany parents find meaning through

acquiring new roles such:acquiring new roles such: parent group leadersparent group leaders conference speakersconference speakers authorsauthors members of advisory councilsmembers of advisory councils

The Power of Parent The Power of Parent Support GroupsSupport Groups

Literature suggests that one primary Literature suggests that one primary method of reaching the appreciation method of reaching the appreciation or “all right” stage is to gain support or “all right” stage is to gain support from parent groups (Gupta & Singhal, from parent groups (Gupta & Singhal, 1994).1994).

Parent / Personal Stories Parent / Personal Stories

Song Written and Sung Song Written and Sung by a Sibling of Child by a Sibling of Child

with ASDwith ASD

Madison Georgi, Age 14, From PittsburghMadison Georgi, Age 14, From Pittsburgh ““Take my Hand”Take my Hand” To download this song, To download this song,

www.autismlink.com/store www.autismlink.com/store

$2 - 100% of proceeds go toward helping $2 - 100% of proceeds go toward helping families of children with ASDfamilies of children with ASD

families coping with autism: trials and triumphs

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