Supporting Families of Children with ASD: The School
Psychologists Role Stacy White, Adrienne Cox, Kim Markoff, &
Christina Russell
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Agenda I. Background II. Parenting Stress & Affective
Outcomes III. Qualitative Study: Family Quality of Life IV.
Identifying Divorce Risk Factors in Parents of Children with
ASD
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Types of family support Family education and training Parent
/group support Respite services/home health care Family counselling
Financial assistance Transitions for adulthood Informational
Recreational/leisure (Freedman & Boyer, 2000)
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Theoretical Perspective Child with ASD Family Community
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Why the Whole Family? To promote positive outcomes for the
student To ensure parents have information and resources To
facilitate co-ordinated care across sectors
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Stressors Financial burdenLack of social life Judgement from
others Worry about the future Need for educational supports
Difficulty managing other family responsibilities Sleep
disturbance
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In 2007-08: Children with autism comprised 4.5% of students
with disabilities An additional 5.4% identified with developmental
delay U.S. Department of Education, National Center for Education
Statistics (2010) How Does This Impact School Psychologists?
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66.4% of parents endorsed participation in support groups More
likely to: Be White Earn >$40,000 Have college degree Be
married/with partner Mandell & Salzer, 2007
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How Does This Impact School Psychologists? Support from school
staff and services was greatest source of support (Tehee et al.,
2009) Systems-based service delivery is one domain of competence
emphasized in NASPs Blueprint for Training & Practice
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Stress and affective outcomes
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Parental Stress Parents of children with ASD report higher
levels of stress than: Parents of typically developing children
Parents of children with other disabilities Abbeduto et al., 2004;
Blacher & McIntyre, 2006; Dabrowska & Pisula, 2010; Estes
et al., 2009; Quintero & McIntyre, 2010
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Maternal Stress Mothers tend to report higher levels of stress
than fathers (Gray, 2003)
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Mental Health Concerns Higher levels of anxiety and depressive
symptoms (Olsson & Hwang, 2001; Sharpley, Bitsika, &
Efremidis, 1997)
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Mental Health Concerns Orr et al. (1993): Highest levels of
stress and depression in mothers of 6- 12 year olds Gray (2002):
Less emotional distress, stigma Increased concerns about future
care
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Parenting Stress & Mental Health Across the Lifespan
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Preschool Child behavior problems (Estes et al., 2009; Hastings
et al., 2005; Tomanik, Harris, & Hawkins, 2004) Tantrums,
aggression, non-compliance, emotional regulation Severity of autism
symptomatology (Cassidy et al., 2008; Davis & Carter, 2008;
Hastings & Johnson, 2001) Impairments in communication &
social skills
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Preschool Anxiety & depressive symptoms (Estes et al.,
2009; Quintero & McIntyre, 2010) Risk factors: Sleeping
problems Lower parenting self-efficacy Lower use of social supports
(Carter, de L. Martinez-Pedraza, & Gray, 2009)
Elementary/Middle School Duarte et al, 2005; Konstantareas
& Papageorgiou, 2006; Phetrasuwan & Miles, 2009 Autism
symptoms & associated behaviors: Poor social reciprocity
Inappropriate emotional responses Limited verbal communication
Verbal vs. non-verbal children
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Elementary/Middle School Among mothers: Distress, guilt,
depression, responsibility for diagnosis and problem behavior
Higher anxiety Behavior problems associated with maternal, but not
paternal, stress Gray, 2003; Hastings, 2003
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High School & Adulthood Few studies, but trends are similar
to those for younger age groups Challenging behavior may continue
to be stressor for parents
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High School & Adulthood Long-term concerns Transition from
school Residential placement EmploymentFuture care
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Support for Parents
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Conceptual Underpinnings of Family-Centered Support Services
should 1. Enable and empower family members to make informed
decisions 2. Be responsive to the needs of the entire unit 3. Be
flexible enough to accommodate unique needs Agosta (1989)
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I had two typical children, my husband and I made the choices.
All of a sudden C (child with disability) came along and everyone
else made choices for me. I lost all control. But (flexible
supports) give families a choice, and I think thats something that
is taken away when you do have a child with special needs. - Mother
from the focus groups in Freedman and Boyer, 2000.
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Family Education and Training McConachie and Diggle (2007)
found that parent training led to lower levels of depression in
mothers, among other positive child and parental outcomes Tonge et
al., (2006) found parent training improves parental mental health
and adjustment in parents, particularly those with preexisting
mental health problems (e.g. insomnia, anxiety, depression).
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Example of one manualized Parent-Training Program Pre-Schoolers
with Autism Brereton &Tonge, 2005 For parents of young children
newly diagnosed with autism (2-5) 60$ for Clinician Manual 25$ for
Parent Manual 20 sessions
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Parent Education/Behavior Management (Tonge et al., 2006)
Treatment sessions included: Education about autism Features of
communication, social, play, and behavioral impairments Principles
of managing behavior and change Improving social interaction and
communication Discussing available services Managing parental
stress, grief and mental health problems Sibling, family, and
community responses to autism
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Parent/Group Support Primary caregivers of children with ASD
need emotional support (Garwick et al., 1998; Shu et al., 2001)
Parent-to-Parent model (Singer et al., 1999) Parents perception of
their child improved Increased ratings towards resolution of their
main need Parent groups More informal, run by parents CBT, run by
clinician Online Available anytime, dont require childcare
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Family Quality of Life Selected Results from a Qualitative
Study
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Purpose To investigate the family quality of life amongst
children with autism spectrum disorder and see how peers and the
formation of friendship can shape emerging adolescence.
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Beginning Purpose Transition in Findings Mothers Experience
Family Quality of Life Emerging Adolescence Transition to Adulthood
FriendshipPeers
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Methods: Data Collection & Analysis Recruitment of mothers
from Indiana and Ohio. Interviews were conducted in the Spring of
2009.
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Demographics Mothers Age: 29-37 at birth of child = 32 Fathers
Age: 26-41 at birth of child = 33 6 Males 1 Female (All had at
least one sibling) 2 Families had 2 children with ASD 5 Mothers
Interviewed
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Demographics Current Age 101113.515.5172022 Age at Diagnosis 2
YR 3 MOS82.52121014 Ages reflective of data collected in 2009
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Interview Final Thoughts Peer Relations & Formation of
Friendship School Environment/Services & Intervention Family
Quality of Life/Family Impact Personal Background
The Day I Found Out my Child had Autism Grief I think we just
cried a lot Feeling of uncertainty Diagnosis and didnt mean much at
first (IQ 150) Need for more resources/direction Absolute
relief
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Family Quality of Life After Diagnosis Stress! Stressful and
intense and it became very public. Very stressful. Werent finding
support among their family Difficult for the mother because wanted
to have more children
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Sibling Relationships Improvements Better than ever before More
tolerant and accepting Positive They have a pretty good
relationship Painful relationship physically and emotionally
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The search for support Facilitating peer relationships E.g.
Finding sports camps Financial Money for therapy. There is never
enough money, especially times two with Autism Support for
post-school/adult services E.g. Graduating high school > living
independently
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Maternal Concerns Clash between alternative therapies and
medications Community acceptance of Autism Earlier diagnosis &
interventions Access to services Availability Affordability of
services
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Maternal Concerns Transition to Adulthood Puberty College/
employment Independent living Relationships /marriage
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Planning for adulthood
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Planning for the future: Adolescence to adulthood As the first
wave approaches graduation, there are at least four times as many
students identified with ASD who are in elementary and middle
school. To create change in outcomes for adolescents and young
adults with ASD, efforts must be increased to develop
scientifically-based practices now. (Schall & McDonough,
2010)
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Interventions & Techniques: Prepare for Work Specialized
interventions and treatments can be used to teach important skills
needed in the vocational setting: Career exploration activities
Work experience Behavior management strategies Employment retention
strategies (Hendricks & Wehman, 2009)
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Interventions & Techniques: Postsecondary Education For a
successful educational experience adolescents will likely need:
Specialized teaching strategies Supports Accommodations (Hendricks
& Wehman, 2009)
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Interventions & Techniques: Home & Living Planning
should include: exploring residential opportunities and working
toward goals that will enable appropriate living situations within
the community. If a residential setting is inaccessible, it would
be beneficial to plan to educate the family members so they are
well equipped to support their loved one. (Hendricks & Wehman,
2009)
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Transition to Adulthood Resources Life Journey Through Autism:
A Guide for Transition to Adulthood by Danya International, Inc.
(Danya), Organization for Autism Research (OAR), and Southwest
Autism Research & Resource Center (SARCC)
http://www.researchautism.org/resources /reading/index.asp
http://www.researchautism.org/resources /reading/index.asp
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Support for families
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Sibling Education Children may be confused about their siblings
diagnosis Lack of information leaves a big space to be filled by
misinformation, fears and fantasies (Harris, 1994) Extent and
openness of parental communication about ASD major factor in
sibling adjustment (Howlin, 1988) After sibling education
intervention, siblings who had increased knowledge had improved
sibling adjustment (Kao & Laboto, 2002)
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Sibling Support Compared to siblings, the child with ASD
receives a disproportionate amount of attention from parents
(Dillon, 1996) Siblings may feel isolation, guilt, shame, longing
to be alone with parents, mourn for typical relationship (Harris,
1983) Sibshops Serves as a protective factors for siblings of
individuals with disabilities Positive results last into adulthood
(Johnson& Sandall, 2005) Groups at school with siblings of
children with ASD
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Respite Services/Home health care One of the most common family
supports used (Freedman & Boyer, 2000) Parents report benefits
such as break from routine, sleep, freedom, sense of privacy and
normalcy (Davies et al., 2004) Relief that a trained person is
watching your child Over half of parents did not receive
information on how to acquire respite care subsidies 1 in 4 parents
were uninformed about respite
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Financial Assistance SSI, Medicaid Health Care Reform For the
ASD community provision preventing plans refusing to cover a child
with a pre-existing condition went into effect on September 23,
2010. Similarly, dependent coverage through age 26 has been very
helpful for young adults with ASD given that certain companies do
not opt out. Other resources (e.g. www.autismcares.org covers
living expenses up to $1,000; www.neighborheart.org quality of life
grants)www.autismcares.orgwww.neighborheart.org Easter Seals Autism
Family Resource Center Financial assistance, Lending library,
Parent-to-Parent, Planning for the future
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Informational Obstacles/Barriers to support services (Freedman
& Boyer, 2000) Lack of information (e.g. list of disconnected
numbers, out of date contacts)
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Example: Information Sheet Autism Resource Sheet Current as
of____________ Received from: Name____________ Date:________ 1.
Support/Resource Group Contacts Local ARC Advocacy Group
Name______________ Phone Number____________ Local Chapter of Autism
Society of America (ASA) Name______________ Phone
Number____________ 2. Public School Resources 3. Medical
Professionals (as needed) 4. Treatment/education support 5. Other
parents who have a child with autism
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Identifying Divorce Risk Factors in Families of Children with
Autism
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Is Divorce More Common in Families of Children with Autism A)
Yes, more common in these families B) No, less common in these
families C) Rates are the same across families with or without
autism
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The Answer Yes, 80% more common in these families (National
Center for Autism Research and Education, 2008) No, rates are the
same in families with and without autism (Freedman et al., 2010).
So, which is correct?
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How Does Divorce Affect Families? Negative Consequences
Financial stress Living apart from 1 parent Adjustment period Is
there anything positive about divorce? Yes, in families where a
high level of conflict is being seen by the children
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Who is at risk for divorce? Parents who have children with
severe behavioral difficulties (e.g. self injurious behavior)
Mothers who are depressed and have a child with special needs
Mothers who are young and have a child with autism Parents whose
youngest child has autism How can School Psychologists
intervene?
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Common Coping Strategies Used by Parents of Children with
Autism According to Gray (2003), the 2 most common coping
strategies were: 1. Anticipating difficulties that will arise in a
given situation 2. Viewing the future one day at a time
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Common Coping Strategies Used by Mothers vs. Fathers Keep the
child busy at home Spend more time at work Fathers Keep the child
on a therapeutic regimen Keep the child separated from siblings
Mothers
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Whats Common Among Mothers with Higher Life Satisfaction
(Tunali & Power, 2002) Prefer to focus on being a good mother
rather than having a successful career More time spent with
extended family More conversations with their spouse about spousal
support Display acceptance towards anomalous behavior
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What Can School Psychologists do? Assess risk factors when
meeting with parents Recommend resources that will help the entire
family (not just the child)
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Support for families
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Family Counseling Counselors are trained to help families cope
with a variety of internal and external stressors Counselors can
Aid families with special needs to normalize the experience through
education Help parents work through feelings of guilt, hurt, blame
Instruct couples to spend time alone together, take care of their
own personal needs Provides families with a safe place to practice
role-play, modeling appropriate social behavior (Lozzi-Tuscano,
2004)
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Religious coping Religion can serve as a source of support for
families with children with special needs Additional social support
Emotion-focused coping E.g. minimizes stress by providing an
alternative explanation for the challenges of parenting a child
with ASD Problem focused coping E.g. respite care (Bennett, Deluca
& Allen, 1995; Tarakeshwar & Pargament, 2001 )
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Religious coping Church groups (Christianity) Parents who see
religion as a positive resource may look to their congregation as
another resource Judaism chavurah or havurah
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Quick lesson on Recreational Leisure Core Common, everyday,
low-cost, relatively accessible, often home- based activities that
many families do frequently (Zabriskie & McCormick, 2003, p.
168) E.g. Board games, shooting hoops, going to the park Balance
Depicted by activities that are generally less common, lees
frequent, more out of the ordinary, and usually not home- based
thus providing novel experiences (Zabriskie & McCormick, 2003,
p. 168). E.g. Vacations, social outings, theme parks
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Recreational Leisure Number of hours mothers spend in leisure
activity predict positive affect (Smith et al., 2009) Caveat
Mothers spend significantly less time in leisure activities and
significantly more time providing childcare Fewer than of parents
felt there are appropriate play and leisure options in their local
area Only 58% of respondents felt their child could access
mainstream activities
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Community YMCA Colleges and University Programs/Research E.g.
Special education dept, Adaptive P.E. program Special Olympics
Parks and Recreation
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Cruises through Carnival (~7-800 per person) Group cruises +
Individual Autism Services Accommodate special diets, cruise PECS,
experienced staff, priority boarding, saved seats at shows, respite
care Autism Cruises
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Ski Resorts Ski resorts starting to offer adaptive lessons for
children with ASD Anecdotal evidence kids with ASD benefit from
skiing
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Implications for School Psychologists What should we take
away?
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What can school psychologists do? Start a parent,or ASD support
group (ideas: book club) Consider parent-centered interventions
Organize parent training at the school Share information about
risks associated with having a child with autism on marriage,
family structure, etc. Become well-informed about the resources,
opportunities and connections for families in your area Create fact
sheet for parents with information pertaining to where they are at
in planning for their child Autism Awareness for students and
teachers Support groups for siblings of children with ASD Reach out
to other school personnel (e.g. counselors, social workers, etc) to
organize programming for families with ASD
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Group Activity!
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Questions
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References Abbeduto, L., Seltzer, M.M., Shattuck, P., Krauss,
M.W., Orsmond, G., & Murphy, M.M. (2004). Psychological
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