Supporting Families of Children with ASD: The School Psychologists’ Role Stacy White, Adrienne Cox, Kim Markoff, & Christina Russell

Supporting Families of Children with ASD: The School Psychologists Role Stacy White, Adrienne Cox, Kim Markoff, & Christina Russell

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

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)

Theoretical Perspective Child with ASD Family Community

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

Stressors Financial burdenLack of social life Judgement from others Worry about the future Need for educational supports Difficulty managing other family responsibilities Sleep disturbance

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?

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

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

Stress and affective outcomes

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

Maternal Stress Mothers tend to report higher levels of stress than fathers (Gray, 2003)

Mental Health Concerns Higher levels of anxiety and depressive symptoms (Olsson & Hwang, 2001; Sharpley, Bitsika, & Efremidis, 1997)

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

Parenting Stress & Mental Health Across the Lifespan

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

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 Associated behavior problems Conduct problems, non-compliance, maladaptive social behavior Autism symptomatology Lecavalier, Leone, & Wiltz, 2006; Rao & Beidel, 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

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

High School & Adulthood Few studies, but trends are similar to those for younger age groups Challenging behavior may continue to be stressor for parents

High School & Adulthood Long-term concerns Transition from school Residential placement EmploymentFuture care

Support for Parents

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)

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.

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).

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

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

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

Family Quality of Life Selected Results from a Qualitative Study

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.

Beginning Purpose Transition in Findings Mothers Experience Family Quality of Life Emerging Adolescence Transition to Adulthood FriendshipPeers

Methods: Data Collection & Analysis Recruitment of mothers from Indiana and Ohio. Interviews were conducted in the Spring of 2009.

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

Demographics Current Age 101113.515.5172022 Age at Diagnosis 2 YR 3 MOS82.52121014 Ages reflective of data collected in 2009

Interview Final Thoughts Peer Relations & Formation of Friendship School Environment/Services & Intervention Family Quality of Life/Family Impact Personal Background

Final Diagnosis Mother 1 (10yrs): Mild-Moderate Autism; Communication Disorder Mother 2 (11yrs): Aspergers & ADHD Mother 3 (13.5yrs): Mild Autism Mother 3 (15.5yrs): Mild-High Functioning Autism/Aspergers Mother 4 (17yrs & 20yrs): Aspergers Mother 5 (22yrs): Aspergers

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

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

Sibling Relationships Improvements Better than ever before More tolerant and accepting Positive They have a pretty good relationship Painful relationship physically and emotionally

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

Maternal Concerns Clash between alternative therapies and medications Community acceptance of Autism Earlier diagnosis & interventions Access to services Availability Affordability of services

Maternal Concerns Transition to Adulthood Puberty College/ employment Independent living Relationships /marriage

Planning for adulthood

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)

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)

Interventions & Techniques: Postsecondary Education For a successful educational experience adolescents will likely need: Specialized teaching strategies Supports Accommodations (Hendricks & Wehman, 2009)

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)

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

Support for families

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)

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

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

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

Informational Obstacles/Barriers to support services (Freedman & Boyer, 2000) Lack of information (e.g. list of disconnected numbers, out of date contacts)

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

Identifying Divorce Risk Factors in Families of Children with Autism

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

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?

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

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?

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

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

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

What Can School Psychologists do? Assess risk factors when meeting with parents Recommend resources that will help the entire family (not just the child)

Support for families

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)

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 )

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

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

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

Community YMCA Colleges and University Programs/Research E.g. Special education dept, Adaptive P.E. program Special Olympics Parks and Recreation

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

Ski Resorts Ski resorts starting to offer adaptive lessons for children with ASD Anecdotal evidence kids with ASD benefit from skiing

Implications for School Psychologists What should we take away?

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

Group Activity!

Questions

References Abbeduto, L., Seltzer, M.M., Shattuck, P., Krauss, M.W., Orsmond, G., & Murphy, M.M. (2004). Psychological well-being and coping in mothers of youths with autism, Down syndrome, or Fragile X syndrome. American Journal on Mental Retardation, 109(3), 237-254. Blacher, J., & McIntyre, L.L. (2006). Syndrome specificity and behavioural disorders in young adults with intellectual disability: Cultural differences in family impact. Journal of Intellectual Disability Research, 50(3), 184-198. Carter, A.S., de L. Martinez-Pedraza, F., & Gray, S.A.O. (2009). Stability and individual change in depressive symptoms among mothers raising young children with ASD: Maternal and child correlates. Journal of Clinical Psychology, 65(12), 1270-1280. Cassidy, A., McConkey, R., Truesdale-Kennedy, M., & Slevin, E. (2008). Preschoolers with autism spectrum disorders: The impact on families and the supports available to them. Early Child Development and Care, 178(2), 115-128. Dabrowska, A., & Pisula, E. (2010). Parenting stress and coping styles in mothers and fathers of pre-school children with autism and Down syndrome. Journal of Intellectual Disability Research, 54(3), 266-280. Davis, N.O., & Carter, A. (2008). Parenting stress in mothers and fathers of toddlers with autism spectrum disorders: Associations with child characteristics. Journal of Autism and Developmental Disorders, 38, 1278-1291. Duarte, C.S., Bordin, I.A., Yazigi, L., & Mooney, J. (2005). Factors associated with stress in mothers of children with autism. Autism, 9(4), 416- 427. Estes, A., Munson, J., Dawson, G., Koehler, E., Zhou, X., & Abbott, R. (2009). Parenting stress and psychological functioning among mothers of preschool children with autism and developmental delay. Autism, 13(4), 375-387. Gray, D.E. (2002). Ten years on: a longitudinal study of families of children with autism. Journal of Intellectual & Developmental Disability, 27(3), 215-222. Gray, D.E. (2003). Gender and coping: The parents of children with high functioning autism. Social Science & Medicine, 56, 631-642. Hastings, R.P. (2003). Child behavior problems and partner mental health as correlates of stress in mothers and fathers of children with autism. Journal of Intellectual Disability Research, 47, 231-237. Hastings, R.P., Kovshoff, H., Ward, N.J., Espinosa, F.D., Brown, T., & Remington, B. (2005b). Systems analysis of stress and positive perceptions in mothers and fathers of pre-school children with autism. Journal of Autism and Developmental Disorders, 35(5), 635-644. Hastings, R.P., & Johnson, E. (2001). Stress in UK families conducting intensive home-based behavioral intervention for their young child with autism. Journal of Autism and Developmental Disorders, 3(1), 327-336. Hendricks, D. R., & Wehman, P. (2009). Transition from school to adulthood for youth with autism spectrum disorders: Review and recommendations. Focus on Autism and Other Developmental Disabilities, 24, 2, 77-88. doi: 10.1177/1088357608329827

References Konstantareas, M.M., & Papageorgiou, V. (2006). Effects of temperament, symptom severity and level of functioning on maternal stress in Greek children and youth with ASD. Autism, 10(6), 593-607. Lecavalier, L., Leone, S., & Wiltz, J. (2006). The impact of behavior problems on caregiver stress in young people with autism spectrum disorders. Journal of Intellectual Disability Research, 50(3), 172-183. Mandell, D. S., & Salzer, M. S. (2007). Who joins support groups among parents of children with autism? Autism, 11(2), 111-122. doi: 10.1177/1362361307077506 National Association of School Psychologists (2006). School psychology: A blueprint for training and practice III. Bethesda, MD: Author. Olsson, M. B., and Hwang, C. P. (2001). Depression in mothers and fathers of children with intellectual disability. Journal of Intellectual Disability Research, Special Issue: Mental Health and Intellectual Disability: IX 45(6), 535543. Orr, R.R., Cameron, S.J., Dobson, L.A., & Day, D.M. (1993). Age-related changes in stress experienced by families with a child who has developmental delays. Mental Retardation, 31(3), 171-176. Phetrasuwan, S., & Miles, M.S. (2009). Parenting stress in mothers of children with autism spectrum disorders. Journal for Specialists in Pediatric Nursing, 14(3), 157-165. Quintero, N., & McIntyre, L.L. (2010). Sibling adjustment and maternal well-being: An examination of families with and without a child with an autism spectrum disorder. Focus on Autism and Other Developmental Disabilities, 25(1), 37-46. Rao, P.A., & Beidel, D.C. (2009). The impact of children with high-functioning autism on parental stress, sibling adjustment, and family functioning. Behavior Modification, 33(4), 437-451. Schall, C. M., & McDonough J. T. (2010). Autism spectrum disorders in adolescence and early adulthood: Characteristics and issues. Journal of Vocational Rehabilitation, 32, 81-88. doi: 10.3233/JVR-2010-0503 Sharpley, C. F., Bitsika, V., & Efremidis, B. (1997). Influence of gender, parental health, and perceived expertise of assistance upon stress, anxiety, and depression among parents of children with autism. Journal of Intellectual and Developmental Disability 22(1), 1928. Tomanik, S., Harris, G. E., & Hawkins, J. (2004). The relationship between behaviors exhibited by children with autism and maternal stress. Journal of Intellectual and Developmental Disability 29(1), 1626. Tehee, E., Honan, R., & Hevey, D. (2009). Factors contributing to stress in parents of individuals with autistic spectrum disorders. Journal of Applied Research in Intellectual Disabilities, 22, 34-42. doi: 10.1111/j.1468-3148.2008.00437.x U.S. Department of Education, National Center for Education Statistics (2010). Digest of Education Statistics, 2009 (NCES 2010-013). Retrieved from: http://nces.ed.gov/fastfacts/display.asp?id=64

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Supporting Families of Children with ASD: The School Psychologists’ Role Stacy White, Adrienne Cox, Kim Markoff, & Christina Russell