Supporting Families of Children with ASD: The School Psychologists’ Role

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

2. Agenda • Background • Parenting Stress & Affective Outcomes • Qualitative Study: Family Quality of Life • Identifying Divorce Risk Factors in Parents of Children with ASD

3. 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)

4. Theoretical Perspective

6. Stressors

7. How Does This Impact School Psychologists? 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)

8. 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

9. 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 NASP’s Blueprint for Training & Practice

10. Stress and affective outcomes

11. 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

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

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

14. 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

15. Parenting Stress & Mental Health Across the Lifespan

16. Preschool

17. Preschool • Risk factors: • Sleeping problems • Lower parenting self-efficacy • Lower use of social supports • (Carter, de L. Martinez-Pedraza, & Gray, 2009)

18. Elementary/Middle School Lecavalier, Leone, & Wiltz, 2006; Rao & Beidel, 2009

19. Elementary/Middle School Duarte et al, 2005; Konstantareas & Papageorgiou, 2006; Phetrasuwan & Miles, 2009

20. 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

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

22. High School & Adulthood Long-term concerns

23. Support for Parents

24. Conceptual Underpinnings of Family-Centered Support • Services should… • Enable and empower family members to make informed decisions • Be responsive to the needs of the entire unit • Be flexible enough to accommodate unique needs • Agosta (1989)

25. “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 that’s something that is taken away when you do have a child with special needs.” • Mother from the focus groups in Freedman and Boyer, 2000.

26. 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).

27. Example of one manualizedParent-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

28. Parent Education/Behavior Management (Tonge et al., 2006)

29. 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, don’t require childcare

31. Family Quality of Life Selected Results from a Qualitative Study

32. 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.

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

35. Demographics

36. Demographics Ages reflective of data collected in 2009

37. Interview

38. Final Diagnosis

39. The Day I Found Out my Child had Autism

40. Family Quality of Life After Diagnosis

41. Sibling Relationships • Improvements • “Better than ever before” • More tolerant and accepting • Positive • “They have a pretty good relationship” • Painful relationship – physically and emotionally

42. 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

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

44. Maternal Concerns

45. Planning for adulthood

46. 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)

47. 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)

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

49. 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)

50. 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