Families Coping with
Autism: Trials and Triumphs
The Watson Institute
Julie Knapp, PhD
Lindsy Yarger, MA
Joyce Giovannelli, PhD
Nicole Jarock, M.A.T.
Agenda
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Trials on the Family
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Chronic Stress
Childrearing Issues
Demands on Parents’ Time
Marital Intimacy
Marital Relationships
Siblings
Agenda
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Stages of Grief and Loss
Elizabeth 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 Goals
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To normalize the experience of living with
chronic stress
To normalize the feelings of guilt, anger,
and
depression
Learn to celebrate the accomplishments of a
child with ASD
To identify adaptation and adjustment strategies
to conquer the stress associated with raising a
child with ASD
Families Raising a Child
with Autism
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CDC Study (2007):
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1/150 children with ASD
1/94 Males with ASD
1 child diagnosed every 20 minutes
Increase in Diagnosis
in PA
Research Study /
Trials on the Family
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Purpose - better understand the
relationship of autism and family stress
Participants:
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Parents raising a child with ASD, received services at
The Watson Institute
Parents of typical developing children, attended two
local daycare centers in Pittsburgh, PA
Marital Satisfaction Inventory, Revised
Family Assessment Measure, Version Three
Study Participants
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127 parents participated in study
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37 families raising a child with ASD
28 families raising typical developing children
Ages ranged from 28 to 53 years
Ages of the children ranged from 3-12
years
Results of Study
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Parents of children with ASD reported higher levels of
stress within a marriage
Parents of children with ASD reported greater conflict
over child rearing.
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Disagreements with spouse over treatment, handling behaviors,
school interventions, etc.
Parents of children with ASD scored significantly higher
on the Dissatisfaction with Children subscale, indicating
greater dissatisfaction with their children.
Results of Study
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Parents raising a child with ASD reported
dissatisfaction regarding lack of shared
leisure activities as a family
Parents of children with ASD reported
higher sexual dissatisfaction
Results of Study
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Overall, parents raising a child with ASD
reported greater marital dissatisfaction
Relying on one’s partner for support when
that partner is also in crisis and needing
support can place a “enormous burden on
the marriage”
Chronic Losses
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Think there is
something “different”
about your child.
Family members and
friends reassure you
that you should wait,
your child will catch
up
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Sense of being
misunderstood
Sense that others do
not believe you
Loss of selfconfidence as a
parent
Chronic Losses
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A professional
diagnosing your child
with autism
Child begins to
receive wraparound
services, multiple
treatment
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Confirmation /
Learning your child
is not developing
typically
Privacy, Personal
time, Time for
marriage, Time for
other children
Chronic Losses
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Family, friends,
neighbors withdrawal
– may avoid their
children interacting
with you
Arguments,
breakdown in
marriage
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Loss of support
system
Loss of sense of team
within marriage
Autism
and Siblings
Why Professionals Care about
Sibling Relationships
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Cognitive skills
Affective skills
Social skills
Self-Image
The Sibling Relationship
with ASD
“It is important to recognize the difference
between normal frustration of childhood and
the special impact of having
a sibling with autism.”
(Harris 13)
Reported Negative Outcomes
for Siblings of Children with ASD
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Anger
Loneliness
Feelings of guilt or embarrassment
Hassles with their siblings’ behavior
Externalizing and internalizing behavior problems
Depression
Shift in family roles
Poor social reciprocity between siblings
Factors Contributing
Outcomes for Siblings
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Parental stress
Marital satisfaction
Parental expectations
Stages of
Grief and Loss
Grief and Loss (Kubler-Ross)
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Denial
Anger
Bargaining
Depression
Acceptance
Grief and Loss / Denial
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Shock
Numbness
Confused
Dazed
Bewildered
Detached from reality
Belief child is
misdiagnosed
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Gives parents
time to find their
inner strength to deal
with the painful
feelings
Grief and Loss / Anger
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“Why did this happen to my family?”
Resent parents of typical developing
children
Anger toward self, partner, God,
professionals
Grief and Loss / Bargaining
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Seek multiple opinions
“Shop around” for other or no diagnosis
Grief and Loss / Depression
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As many as one third of the mothers raising a
child with autism exhibit depressive symptoms
Difficulty connecting with child
May not perform daily tasks
Disturbed sleep
Chronic tiredness, fatigue
Difficulty making daily decisions
Physical symptoms
Grief and Loss / Acceptance
“We mourn the loss of the child we anticipated
who suddenly vanished from our lives, the child
who slipped through our hands before we had a
chance to know him or her, the one who quietly
disappeared through the crowd, never to be found.
This mourning process, which I imagine to be similar t
to experiencing a miscarriage or premature death of a
child, is a necessary step before we can move on and
begin to accept our disabled children into our lives.”
(Carter, 2004, p. 182)
Family Adjustment
and Adaptation
Family Adjustment and Adaptation
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Impact on the family system
Family patterns and interactions
Family coping mechanisms
Adjusting and adapting
The Typology Model of Family
Adjustment and Adaptation
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TMFAA:
- Strengths
- Resources
- Coping mechanisms
Role of these attributes
TMFAA
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TMFAA model is comprised of two phases:
1.) Adjustment Phase: typically a short-term
response that the family experiences.
2.) Adaptation Phase: Long term response
of the family
Adjustment Phase
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Severity of the Stressor
Family’s Vulnerabilities
Family’s Type
Resistant Resources
Appraisal of the Event
Family’s Problem Solving Capabilities
Interaction of these Variables
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The way in which these factors interact will
determine how well the family adjusts to the
crisis situation and if or when the family
members will move onto the next phase of the
TMFAA
In the adjustment phase, the dimensions and
levels of the factors play a role in determining
the family’s adjustment to the crisis situation
Adaptation Phase
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Number of demands placed on the family system
Typology of the Family
Strengths of the Family
Situational Appraisal
Family Schema
Social Support
Problem Solving and Coping Skills
Ineffective Coping Skills
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Avoidance
Isolation
Withdrawal
Self-Criticism
Blaming self or others
Wishful Thinking
Resignation
Positive Coping Skills
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Exercise and nutrition
Psycho-Educational - Seek information on
the perceived problem
Plan time for relaxation as a family
Rely on social supports
Positive Coping Skills
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Finding humor in a given situation
Parents need to schedule time to be
together without the children!
Create a plan for childrearing (share
responsibilities, share supervision)
Psychotherapy
Support Groups
Respite Care
Positive Coping Mechanisms
for Siblings
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Create a safe haven
Allow time for sibling to nurture hobbies
and skills
Spend 1:1 time with typical sibling
Provide age-appropriate information on
autism
Strengths in
Children with Autism
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Gross motor skills
Nonverbal intelligence
Rote memory
Ability to make associations quickly,
Ability to follow routines
Appreciation for order and routine
Specialized talents including music, calculating
numbers, and drawing
Positive Aspects of Parenting
a child with an Autism Spectrum Disorder
Welcome to Holland!
Beyond
Stages of Grief
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Kubler-Ross discussed five stages that
characterize people’s reactions to loss and
grief.
Research (Poyadue, 1993) suggests that
there is a sixth stage for parents of
children with disabilities: the appreciation
or “all right” stage.
How to reach the
“all right” stage
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1) The need to form new identities
2) Attempts to derive meaning from the
situation
3) The development of a sense of
personal control
What are the Positives?
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Learning new coping skills and resources
(Schafer & Coleman (1992)
What are the Positives?
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Perception of growth related to stress
(Nolen-Hoeksema & Larson 1999)
What are the Positives?
Gupta & Singhal (2004) have listed 14
positives to raising a child with a disability:
1. Pleasure/satisfaction in providing care for
the child
2. Child as a source of joy/happiness
What are the Positives?
3. Sense of accomplishment in having done one’s
best for the child
4. Sharing love with the child
5. Child providing a challenge or opportunity to learn and
develop
6. Strengthened family and/or marriage
7. Giving a increased sense of purpose in life
What are the Positives?
8.Development of new skills, abilities, or new
career opportunities
9. Becoming a better person (more
compassionate, less selfish, more tolerant)
10. Increased personal strength or confidence
11. Expanded social/community networks
What are the Positives?
12. Increased Spirituality
13. Changed perspective on life (e.g.,
clarified what is important in life, more
aware of the future)
14. Making the most of each day and living
life at a slower pace
New Roles
Many parents find meaning through
acquiring new roles such:
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parent group leaders
conference speakers
authors
members of advisory councils
The Power of Parent
Support Groups
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Literature suggests that one primary
method of reaching the appreciation or
“all right” stage is to gain support from
parent groups (Gupta & Singhal, 1994).
Parent / Personal Stories
Song Written and Sung
by a Sibling of Child
with ASD
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Madison Georgi, Age 14, From Pittsburgh
“Take my Hand”
To download this song,
www.autismlink.com/store
$2 - 100% of proceeds go toward helping
families of children with ASD