Families of Children with Autism: A New Perspective

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Families of Children with Autism A New
Perspective

• Mojdeh Bayat, PhD
• DePaul University

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• Families Establishing an autism culture?

WWW.EVIDENCEOFHARM.COM
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• What do we know about families of children with
  autism?

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Traditional Research about families   of
children with autism

• Multiple stressors in families of children with
  autism
• Burden of Care (Schunterman, 2002)
• Depression and anxiety
• Higher in autism than in other disabilities
• Higher in mothers than fathers

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Traditional Research Findings

• Severe limitation on careers.
• Distress due to outside reactions
• stigmatization varies with age and
• severity of autismaggressive behaviors.
• Parental isolation.
• Financial costs
• Higher costs of education, therapy,
• Medical services, loss of employment and income,
• Loss of leisure time, special care.

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Traditional Research Findings

• High levels of stress
• Mothers more stressed
• Related to behavior problems
• Related to ASD characteristics
• Socialization in Aspergers and HF autism
• Related to experience with service providers and
  satisfaction with services

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Inconsistent research

• High divorce rate
• Sibling problems

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• Is there anything positive about having a child
  with a disability, such as autism?

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What are some new research findings?

• Some families do well despite their childs
  disability

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Research on Positive Contributions of Disability
to the Family

• Change of perspective on life,
• Increased sensitivity,
• Support of each other,
• Opportunities to learn,
• Improved family dynamics,
• Increased confidence and assertiveness,
• Strengthened religious faith,
• Growth in empathy and kindness in the siblings
  (Gray, 2002, Summers et al., 1988 Hastings et
  al., 2002, 2005 Taunt Hastings, 2002).

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A study of families of children with autism in
Illinois (Bayat, 2007)

• 175 family members participated
• Chicago Public Schools, Autism Society of
  Illinois, one private day school
• Childs age (2-18)
• 49 (2-8)
• 33 (8-14)
• 18 (14-18)
• Severity of autism (CARS)
• 83 severe social relatedness
• 47 no speech
• 65 aggressive behaviors

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Who participated

• Family members
• 17 fathers
• 77 mothers
• 6 siblings or other caregivers
• 37 African American
• Asian, Hispanic 63 white
• Education
• 36 high school and below
• 64 some college or degree
• Income
• 23 gt 40 K
• 77 41 K and above

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What Did we ask?

• Articulate the effects of autism on person.
• Articulate the effects of autism on the family.
• Describe the child.

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What did we find?

• More than half (62) of families demonstrated
  evidence of family resilience.

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What is family resilience?

• Resilience
• The ability to withstand hardship and rebound
  from adversity, becoming more strengthened
  (Walsh, 1998).
• A family is considered resilient when it
  demonstrates strength, even if it may not
  demonstrate the same attribute at another point
  in time (Walsh, 2003).

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Attributes of Resilient families

• Make meaning out of adversity
• Affirm their strength Keep a positive outlook
• Have some kind of spiritual belief
• Are flexible
• Are connected
• Communicate with one another
• Utilize resources

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Our findings

• Resilience factors in our families
• They made specific meaning about autism (63)
• They pulled resources together, became closer
  (62)
• They affirmed their own gained strength, and
  change of world view
• Thought themselves and other family members
  stronger and more compassionate (39)
• They had stronger beliefs, or new spiritual
  experiences (45)

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Family attributes

• They accepted the disability and were able to
  have a positive adjustment over time
• They learned many lessons from their experiences
  with autism

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Personal Strengths

• They became advocates for children, self, and
  others.
• They moved from depression to adjustment via
  their love for the child.

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Describe your child

• A source of pride
• An Honor to have
• Very hard working

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Negative effects

• Their relationships were strained.
• It was sometimes hard to meet daily goals
  (usually at the beginning).
• They had great Financial burdens, and often
  fought with the system.
• Siblings were being left out.

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Worries

• The future of their child
• Their child with autism had no friend
• Some had to put their careers on hold

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What did they say? (Examples)

• About family closeness
• While the initial diagnosis was devastating,
  ultimately it did bring our family closer
  together. We work together to support our
  children and close ranks when necessary to
  protect them. Our priorities have shifted and we
  no longer sweat the small stuff. This experience
  has also shown us who we can count on in our
  lives and who turned out to be a disappointment.
  We are careful to surround ourselves with people
  who genuinely care.
• I cannot say enough on the positive contribution
  our autistic son brings to our family His
  disability affects every one of us, but our
  children continue to learn from his difficulties
  that he overcomes, and it opens their eyes to the
  difference and hardships others go thru. What a
  wonderful little boy he is and a
               true blessing every day.

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What did they say? (Examples)

• Siblings said
• "I don't think I would've been as sensitive if I
  didn't have my brother. When my friends make
  fun of retards, I tell them not to. I think I
  accept differences better as a result of this,"
  a 12 years old sibling.
• "I've definitely become more aware of people in
  general. I love my brother to death, and I know
  that I've become a more caring person because of
  him, a 13 year old sibling.

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What did they say? (Examples)

• About their careers
• Well, I had to put my career on hold to make
  sure someone is here to get my daughter off to
  school, and be there to get her off the bus in
  the evening. Sometimes the bus may come at
  different times, so no ones willing to help me
  with this. Its inconveniencing their schedule,
  a father.
• My sons autism influenced my decision to become
  a speech-language pathologist in mid-life. My
  desire to learn about the disorder led me to
  explore research being done in the area and to
  work with children with disabilities- including
  autism, a mother.

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What did they say? (Examples)

• About depression, adjustment, learning
• I was so depressed, lost and distraught as my
  daughter screamed through life that I often
  considered suicide. But was smart enough to
  realize that I was the most important thing my
  daughter had in her life at the time. As she
  improved, I improved. I have met wonderful
  people I would have never met. I have viewed the
  disabled in a whole new way, and I have become a
  more compassionate person. She took me down a
  very rough road that led to a wonderful place of
  caring for special people.

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What did they say? (Examples)

• About change of world view
• "It has made us aware of how fortunate we are and
  not take anything for granted. Each success no
  matter how small, just makes our day. We have
  been given a truly special gift.
• Autism has made us realize how precious and
  great to make each day. We love life."
• "Even though at times the autistic
  characteristics make it difficult to do many
  ordinary family and non family activities, our
  family has grown more to appreciate many simple
  things in life."

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What did they say? (Examples)

• About spiritual Beliefs
• "I feel God made my child, and he does not make
  mistakes."
• "I feel my son was given to me by God, because
  I can be a strong person, and sensitive person,
  and with these traits, I feel I am the right
  parent for my son."
• "Autism has increased my previous belief that all
  lives are intended to be here. No life or
  disabilities are mistakes. They are just
  different. Autism has made me more aware for my
  reason and purpose of existing."
• "For my family, it has brought us closer, closer
  to God, closer to each other.

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Implications for practice

• How could we promote family resilience?

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Implications

• Best scenario service provision
• Lifecycle services
• EI
• Available current resources
• Information, parent training, services and
  community resources positive behavioral support.
• Add direct services for diagnosis and treatment
  of parental depression
• Early elementary school
• Focus on skills useful for future employment
• High School
• Focus on independent living

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Services which promote family resilience

• Help families articulate the meaning of the
  disability
• Results
• Relationships becoming closer
• Positive coping
• Familys communication
• Cohesion and connectedness
• Help families articulate the positive lessons
  they have learned
• Results
• Affirmation of strength (emotional material)
• Utilizing resources better (emotional material)

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Services which promote family resilience

• Help families enhance their spiritual wellbeing
• Resources
• Yoga, meditation, enhancement of health and
  emotional wellbeing.

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Resources

• General resources
• www.autism.org
• www.autismone.org
• www.autism-society.org
• www.autism.com/ari
• www.autismresearchinstitute.com
• www.nas.org.uk
• www.autismillinois.org
• www.i-ask.org (political action)
• www.nationalautism.org

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Resources

• Autism Autoimmunity project
• www.autismautoimmunityproject.org
• Autism Coalition for Research and Education
• www.autismcoalition.org
• Cambridge Center for Behavioral Studies
• www.behavior.org
• Cure Autism Now Foundation
• www.canfoundation.org
• The Dan Marino Foundation
• www.danmarinofoundation.org
• National Alliance for Autism Research
• www.naar.org
• Organization for Autism Research
• www.researchautism.org

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Resources

• Specific
• www.researchautism.org (OAR)
• www.tacanow.org (local support group)
• http//hometown.aol.com/parentschat/homepage.
• html
• www.Illinoisautismproject.org (training/technical
  assistance)
• www.greatplainslaboratory.com (food allergies)
• www.homeopathicschool.org
• www.sensorylearning.com