Expanding Supports to Improve the Lives of Families of Children With Autism Spectrum Disorder

Journal of Positive Behavior Interventions

Volumn 17, Issue 2, 2015, Pages 95-104

  Russa, Mary Bower ^a   Matthews, Amy L ^a   Owen DeSchryver, Jamie S ^a  

^a GRAND VALLEY STATE UNIVERSITY   (United States)

Author keywords

ASD evidence based practices; autism spectrum disorder; family support; medical home; parent professional collaboration; positive behavior interventions and supports

Indexed keywords

EID: 84924891350     PISSN: 10983007     EISSN: 15384772     Source Type: Journal    
DOI: 10.1177/1098300714532134     Document Type: Article

References (75)

1. Ainbinder J. G.,Blanchard L. W.,Singer G. H. S.,Sullivan M. E.,Powers L. K.,Marquis J. G.,Santelli B.A qualitative study of Parent to Parent support for parents of children with special needs.Journal of Pediatric Psychology. 1998;23:99-109
2. The medical home.Pediatrics. 2002;110:184-186
3. Benson P. R.,Karlof K. R.Anger, stress proliferation, and depressed mood among parents of children with ASD: A longitudinal replication.Journal of Autism and Developmental Disorders. 2009;39:350-362
4. Blair K. C.,Lee I.,Cho S.,Dunlap G.Positive behavior support through family–School collaboration for young children with autism.Topics in Early Childhood Special Education. 2011;31:22-36
5. BoeltzigH.BarbourQ. (2009). Strategies to improve integrated service delivery to people with disabilities (US and UK routes to employment: Institute for Community Inclusion). Retrieved from http://www.communityinclusion.org/pdf/BoeltzigUSUKStrategies.pdf
6. Bradford K.Supporting families dealing with autism and Asperger’s disorders.Journal of Family Psychotherapy. 2010;21:149-156
7. Bristol M. M.Mothers of children with autism or communication disorders: Successful adaptation and the double ABCX model.Journal of Autism and Developmental Disorders. 1987;17:469-486
8. Bromley J.,Hare D. J.,Davison K.,Emerson E.Mothers supporting children with autistic spectrum disorders: Social support, mental health and satisfaction with services.Autism. 2004;8:409-423
9. Brookman-Frazee L.Using parent/clinician partnerships in parent education programs for children with autism.Journal of Positive Behavior Interventions. 2004;6:195-213
10. Bruder M. B.,Harbin G. L.,Whitbread K.,Conn-Powers M.,Roberts, Dunst C. J.,.. Gabbard G.Establishing outcomes for service coordination: A step toward evidence-based practice.Topics in Early Childhood Special Education. 2005;25:177-188
11. Carbone P.,Behl D.,Azor V.,Murphy N.The medical home for children with autism spectrum disorders: Parent and pediatrician perspectives.Journal of Autism & Developmental Disorders. 2010;40:317-324
12. Carter I.Positive and negative experiences of parents involved in online self-help groups for autism.Journal on Developmental Disabilities. 2009;15 (1): 44-52
13. CarterS. (2003). Educating our children together: A sourcebook for effective family-school-community partnerships. U.S. Office of Special Education Programs Retrieved from http://www.directionservice.org/cadre/pdf/educating_our_children.pdf
14. CobbR. B.LipscombS.WolgemuthJ.SchulteT. (2013). Improving post-high school outcomes for transition-age students with disabilities: An evidence review. U.S. Department of Education, Institute of Education Sciences. Retrieved from: http://ies.ed.gov/ncee/pubs/20134011/pdf/20134011.pdf
15. DiCicco-Bloom E.,Lord C.,Zwaigenbaum L.,Courchesne E.,Dager S. R.,Schmitz C.,.. Young L. J.The developmental neurobiology of autism spectrum disorders.The Journal of Neuroscience. 2006;26:6897-6906
16. Dickinson W. P.,Miller B. F.Comprehensiveness and continuity of care and the inseparability of mental and behavioral health from the Patient-Centered Medical Home.Families, Systems & Health. 2010;28:348-355
17. Dunlap G.,Fox L.Supporting families of young children with autism.Infants & Young Children. 1999;12:48-54
18. Dunlap G.,Fox L.Parent-professional partnerships: A valuable context for addressing challenging behaviours.International Journal of Disability, Development and Education. 2007;54:273-285
19. Dunst C. J.,Trivette C. M.,Hamby D. W.Meta-analysis of family-centered help giving practices research.Mental Retardation and Developmental Disabilities Research Reviews. 2007;13:370-378
20. Durand V. M.,Hieneman M.,Clarke S.,Wang M.,Rinaldi M.Positive family intervention for severe challenging behavior I: A multisite randomized clinical trial.Journal of Positive Behavior Interventions. 2012;15:133-142
21. Eber L.,Nelson C. M.School-based wraparound planning: Integrating services for students with emotional and behavioral needs.American Journal of Orthopsychiatry. 1997;67:385-395
22. Fong P. L.Cognitive appraisals in high- and low-stress mothers of adolescents with autism.Journal of Consulting and Clinical Psychology. 1991;59:471-474
23. Freeman H. P.,Rodriguez R. L.History and principles of patient navigation.Cancer. 2011;117:3539-3542
24. Gabovitch E. M.,Curtin C.Family-centered care for children with autism spectrum disorders: A review.Marriage and Family Review. 2009;45:469-498
25. Gensler D.Initiative and advocacy when a parent has a child with a disability.Journal of Infant, Child, and Adolescent Psychotherapy. 2009;8:57-69
26. Gillberg C.Handbook of intellectual and developmental disabilities. Jacobson J. W.Mulick J. A.Rojahn J., ed. New York, NY: Springer; 2009:41-59.
27. Hagner D.,Kurtz A.,Cloutier H.,Arakelian C.,Brucker D. L.,May J.Outcomes of a family-centered transition process for students with autism spectrum disorders.Focus on Autism and Other Developmental Disabilities. 2012;27:42-50
28. Halfon N.,Berkowitz G.,Klee L.Development of an integration case management program for vulnerable children.Child Welfare. 1993;72:379-396
29. Hare D. J.,Pratt C.,Burton M.,Bromley J.,Emerson E.The health and social care needs of family careers supporting adults with autistic spectrum disorders.Autism. 2004;8:425-444
30. Hastings R. P.,Beck A.,Hill C.Mothers’ and fathers’ perceptions positive contributions made by children with an intellectual disability in the family.Journal of Intellectual Disabilities. 2005;9:155-165
31. Hastings R. P.,Taunt H. M.Positive perceptions in families of children with developmental disabilities.American Journal on Mental Retardation. 2002;107:116-127
32. Hecimovic A.,Gregory S.Autism spectrum disorders: Identification, education and treatment.(2005). The evolving role, impact and needs of families. In ZagerD. (Ed.), Autism spectrum disorders: Identification, education and treatment (3rd ed., pp. 111–142). Mahwah, NJ: Lawrence Erlbaum.Zager D., ed. Mahwah, NJ: Lawrence Erlbaum; 2005:111-142.
33. Hendricks D. R.,Wehman P.Transition from school to adulthood for youth with autism spectrum disorders.Focus on Autism and Other Developmental Disabilities. 2009;24:77-88
34. Higgins D. J.,Bailey S. R.,Pearce J. C.Factors associated with functioning style and coping strategies of families with a child with an autism spectrum disorder.Autism. 2005;9:125-137
35. Hutton A.,Caron S.Experiences of families with children with autism in rural New England.Focus on Autism and Other Developmental Disabilities. 2005;20:180-189
36. . 2004;:
37. Ingersoll B.,Hambrick D. Z.The relationship between the broader autism phenotype, child severity, and stress and depression in parents of children with autism spectrum disorders.Research in Autism Spectrum Disorders. 2011;5:337-344
38. Jivanjee P.,Kruzich J. M.,Friesen B. J.,Robinson A.Family perceptions of participation in educational planning for children receiving mental health services.Journal of School Social Work Journal. 2007;32 (1): 75-92
39. Jordan C. J.Evolution of autism support and understanding via the World Wide Web.Intellectual & Developmental Disabilities. 2010;48:220-227
40. Kelly A.,Golnik A.,Cady R.A medical home center: Specializing in the care of children with special health care needs of high intensity.Maternal and Child Health Journal. 2008;12:633-640
41. Khanna R.,Madhavan S. S.,Smith M. J.,Patrick J. H.,Tworek C.,Becker-Cottrill B.Assessment of health-related quality of life among primary caregivers of children with autism spectrum disorders.Journal of Autism and Developmental Disorders. 2011;41:1214-1227
42. King S. M.,Rosenbaum P. L.,King G. A.Parents’ perceptions of caregiving: Development and validation of a measure of processes.Developmental Medicine & Child Neurology. 1996;38:757-772
43. King G.,Zwaigenbaum L.,King S.,Baxter D.,Rosenbaum P.,Bates A.A qualitative investigation of changes in the belief systems of families of children with autism or Down syndrome.Child: Care, Health & Development. 2006;32 (3): 353-369
44. Koegel L. K.,Koegel R. L.,Dunlap G.Positive behavior support: Including people with difficult behavior in the community. Baltimore, MD: Paul H. Brookes; 1996:
45. Kogan M. D. G.,Strickland B. B.,Blumberg S. J.,Singh G. K.,Perrin J. M.,van Dyck P. C.A national profile of the health care experiences and family impact of autism spectrum disorder among children in the United States, 2005–2006.Pediatrics. 2008;122:1149-1158
46. Law M.,Hanna S.,King G.,Hurley P.,King S.,Kertoy M.,Rosenbaum P.Factors affecting family-centered service delivery for children with disabilities.Child: Care, Health and Development. 2003;29:357-366
47. Liptak G. S.,Orlando M.,Yingling J. T.Satisfaction with primary health care received by families of children with developmental disabilities.Journal of Pediatric Health Care. 2006;12 (8): 245-252
48. Marcus L. M.,Kunce L. J.,Schopler E.Handbook of autism and pervasive developmental disorders, vol. 2: Assessment, interventions, and policy.(2005). Working with families. In VolkmarF. R.PaulR.KlinA.CohenD. J. (Eds.), Handbook of autism and pervasive developmental disorders, vol. 2: Assessment, interventions, and policy (3rd ed., pp. 1055–1086). Hoboken, NJ: John Wiley.Volkmar F. R.Paul R.Klin A.Cohen D. J., ed. Hoboken, NJ: John Wiley; 2005:1055-1086.
49. McAllister J. W.,Presler E.,Cooley W. C.Practice-based care coordination: A medical home essential.Pediatrics. 2007;120:723-733
50. McConachie H.,Diggle T.Parent implemented early intervention for young children with autism spectrum disorder: A systematic review.Journal of Evaluation in Clinical Practice. 2006;13:120-129
51. McLennanJ. D.CazaM.BoyleM.McWilliamR.OffordD. R.RondeauK.. DeveauE. (2003). The integration of health and social services for young children and their families. Canadian Health Services Research Foundation. Retrieved from http://www.offordcentre.com/integration/files/CHSRF_Final_Report_web_version.pdf
52. Minke K. M.,Anderson K. J.Family-school collaboration and positive behavior support.Journal of Positive Behavior Interventions. 2005;7:181-185
53. Mitchell W.,Sloper P.Information that informs rather than alienates families with disabled children: Developing a model of good practice.Health and Social Care in the Community. 2002;10:74-81
54. Mulick J. A.,Butter E. M.Educational advocacy for children with autism.Behavioral Intervention. 2002;17:57-74
55. Murphy C. M.,Verden C. E.Supporting families of individuals with Autism Spectrum Disorders: Developing a university-based respite care program.Journal of Positive Behavior Interventions. 2013;15:16-25
56. Myers B. J.,Mackintosh V. H.,Goin-Kochel R. P.“My greatest joy and my greatest heart ache”: Parents’ own words on how having a child in the autism spectrum has affected their lives and their families’ lives.Research in Autism Spectrum Disorders. 2009;3:670-684
57. Nachshen J. S.,Jamieson J.Advocacy, stress, and quality of life in parents of children with developmental disabilities.Developmental Disabilities Bulletin. 2000;28 (1): 39-55
58. National Autism Resource and Information Center. (2012). Family support systems navigation model contents. Retrieved from http://autismnow.org/articles/family-support-systems-navigation-model/
59. Educating children with autism. Lord C.McGee J. P., ed. Washington, DC: Division of Behavioral and Social Sciences and Education, National Academy Press; 2001:140-172.
60. Palfrey J. S.,Sofis L. A.,Davidson E. J.,Liu J.,Freeman L.,Ganz M. L.The pediatric alliance for coordinated care: Evaluation of a medical home model.Pediatrics. 2004;113:1507-1516
61. Palos G. R.,Hare M.Patients, family caregivers, and patient navigators: A partnership approach.Cancer. 2011;117:3592-3602
62. Rao S.,Kalyanpur M.Families and positive behavior support: Addressing problem behavior in family contexts. Lucyshyn J. M.Dunlap G.Albin R. W., ed. Baltimore, MD: Paul Brookes; 2002:219-239.
63. Reich S.,Bickman L.,Heflinger C.Covariates of self-efficacy: Caregiver characteristics related to mental health services self-efficacy.Journal of Emotional and Behavioral Disorders. 2004;12:99-108
64. Renty J.,Roeyers H.Satisfaction with formal support and education for children with autism spectrum disorder: The voices of parents.Child: Care, Health and Development. 2006;32:371-385
65. Ruble L. A.,Dalrymple N. J.,McGrew J. H.Collaborative model for promoting competence and success for students with ASD. New York, NY: Springer Science & Business Media; 2012:
66. Santelli B.,Ginsberg C.,Sullivan S.,Neiderhauser C.Families and positive behavior support: Addressing problem behavior in family contexts. Luchshyn J. M.Dunlap G.Albin R. W., ed. Baltimore, MD: Brookes Publishing; 2002:439-456.
67. Silva L. M. T.,Schalock M.Autism Parenting Stress Index: Initial psychometric evidence.Journal of Autism and Developmental Disorders. 2012;42:566-574
68. Singer G. H. S.,Marquis J.,Powers L. K.,Divenere N.,Santelli B.,Ainbinder J. G.,Sharp M.A multi-site evaluation of Parent to Parent programs for parents of children with disabilities.Journal of Early Intervention. 1999;22:217-229
69. Stoner J. B.,Angell M. E.Parent perspectives on role engagement: An investigation of parents of children with ASD and their self-reported roles with education professionals.Focus on Autism and Other Developmental Disabilities. 2006;21:177-189
70. Stoner J. B.,Bock S.,Thompson J. R.,Angell M. E.,Heyl B. S.,Crowley E.Welcome to our world: Parent perceptions of interactions between parents of young children with ASD and education professionals.Focus on Autism and Other Developmental Disabilities. 2005;20:39-51
71. Strain P.,Danko C. D.Caregivers’ encouragement of positive interaction between preschoolers with autism and their siblings.Journal of Emotional and Behavioral Disorders. 1995;3:2-12
72. Texas Council for Developmental Disabilities. (2012). Service coordination position statement. Retrieved from http://tcdd.texas.gov/public-policy/position-statements/position-statement-service-coordination/
73. Turnbull A. P.,Turnbull R.,Erwin E.,Soodak L.Families, professionals, and exceptionality: Positive outcomes through partnerships and trust. Upper Saddle River, NJ: Pearson; 2006:
74. U.S. Department of Education. (2013). National technical assistance center on positive behavioral interventions and supports. U.S. Department of Education, Office of Special Education Programs. Available from http://www.pbis.org/
75. White N.,Hastings R. P.Social and professional support for parents of adolescents with severe intellectual disabilities.Journal of Applied Research in Intellectual Disabilities. 2004;17:181-190