Skip to main content
SpringerLink
Log in
Book cover

Adolescents and Adults with Autism Spectrum Disorders pp 15–40Cite as

Families of Adults with Autism Spectrum Disorders

  • Chapter
  • First Online:

Abstract

Families with adults with autism spectrum disorders (ASDs) continue to play an instrumental part in the lives of their adult relative with autism throughout the lifespan. This chapter reviews the concerns and roles of families of adults with ASD, and the impact of the stress these responsibilities have on family members. Intervention and support services for families of adults with ASD offered through the TEACCH autism program are described as a framework for the development of future service delivery systems for this growing population.

This is a preview of subscription content, log in via an institution.

Chapter
USD   29.95
Price excludes VAT (USA)
  • Available as PDF
  • Read on any device
  • Instant download
  • Own it forever
eBook
USD   89.00
Price excludes VAT (USA)
  • Available as EPUB and PDF
  • Read on any device
  • Instant download
  • Own it forever
Softcover Book
USD   119.99
Price excludes VAT (USA)
  • Compact, lightweight edition
  • Dispatched in 3 to 5 business days
  • Free shipping worldwide - see info

Tax calculation will be finalised at checkout

Purchases are for personal use only

Learn about institutional subscriptions

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 youth with autism, Down syndrome, or fragile X syndrome. American Journal on Mental Retardation, 109, 237–254.

    Article  PubMed  Google Scholar 

  • Aston, M. (2003). Asperger’s in love. London: Jessica Kingsley.

    Google Scholar 

  • Bägenholm, A., & Gillberg, C. (1991). Psychosocial effects on siblings of children with autism and mental retardation: A population-based study. Journal of Mental Deficiency Research, 35, 291–307.

    PubMed  Google Scholar 

  • Bauminger, N., & Yirmaya, N. (2001). The functioning and well-being of siblings of children with autism: Behavioral-genetic and familial contributions. In J. A. Burack, T. Charman, N. Yirmiya, & P. R. Zelazo (Eds.), The development of autism: Perspectives from theory and research (pp. 61–80). Mahwah, NJ: Lawrence Erlbaum.

    Google Scholar 

  • Benson, P., & Karlof, K. (2008). Child, parent, and family predictors of latter adjustment in siblings of children with autism. Research in Autism Spectrum Disorders, 2, 583–600.

    Article  Google Scholar 

  • Ben-Yizhak, N., Yirmiya, N., Seidman, I., Alon, R., Lord, C., & Sigman, M. (2011). Pragmatic language and school related linguistic abilities in siblings of children with autism. Journal of Autism and Developmental Disorders, 41, 750–760.

    Article  PubMed  Google Scholar 

  • Blacher, J., Kraemer, B. R., & Howell, E. J. (2010). Family expectations and transition experiences for young adults with severe disabilities: Does syndrome matter? Advances in Mental Health and Learning Disabilities, 4, 3–16.

    Article  Google Scholar 

  • Bouma, R., & Schweitzer, R. (1990). The impact of chronic childhood illness on family stress: A comparison between autism and cyctic fibrosis. Journal of Clinical Psychology, 46, 722–730.

    Article  PubMed  Google Scholar 

  • Bristol, M. M., Gallagher, J. J., & Holt, K. D. (1993). Maternal depressive symptoms in autism: Response to psychoeducational intervention. Rehabilitation Psychology, 38, 3–10.

    Article  Google Scholar 

  • Bristol, M. M., Gallagher, J. J., & Schopler, E. (1988). Mothers and fathers of young developmentally disabled and non-disabled boys: Adaptation and spousal support. Developmental Psychology, 24, 441–451.

    Article  Google Scholar 

  • Bromley, J., Hare, D. J., Davison, K., & Emerson, E. (2004). Mothers supporting children with autism spectrum disorders: Social support, mental health status and satisfaction with services. Autism, 8, 409–423.

    Article  PubMed  Google Scholar 

  • Cederlund, M., Hagberg, B., Billstedt, E., Gillberg, I. C., & Gillberg, C. (2007). Aspergers syndrome and autism: A comparative longitudinal follow-up study more than 5 years after original diagnosis. Journal of Autism and Developmental Disorder, 38, 72–85.

    Article  Google Scholar 

  • Cicirelli, V. G. (1994). The longest bond: The sibling life cycle. In L. L’Abate (Ed.), Handbook of developmental family psychology and psychopathology (pp. 44–59). New York: Wiley.

    Google Scholar 

  • Constantino, J. N., Lajonchere, C., Lutz, M., Gray, T., Abbacchi, A., McKenna, K., et al. (2006). Autistic social impairment in the siblings of children with pervasive developmental disorders. American Journal of Psychiatry, 163, 294–296.

    Article  PubMed  Google Scholar 

  • Davis, N., & Carter, A. S. (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.

    Article  PubMed  Google Scholar 

  • Donovan, A. M. (1988). Family stress and ways of coping with adolescents who have handicaps: Maternal perceptions. American Journal on Mental Retardation, 92, 502–509.

    PubMed  Google Scholar 

  • Dumas, J. E., Wolf, L. C., Fisman, S. N., & Culligan, A. (1991). Parenting stress, child behavior problems, and dysphoria in parents of children with autism, Down syndrome, behavior disorders and normal development. Exceptionality, 2, 97–110.

    Article  Google Scholar 

  • Eaves, L. C., & Ho, H. H. (2008). Young adult outcome of autism spectrum disorders. Journal of Autism and Developmental Disorder, 38, 739–747.

    Article  Google Scholar 

  • Ellison, D., Clark, C., & Langford, B. (2005). Where are they now? Adult functioning in autism spectrum disorders. Presentation at the international meeting for autism research, Boston, MA.

    Google Scholar 

  • Fisman, S., Wolf, L., Ellison, D., Gillis, B., Freeman, T., & Szatmari, P. (1996). Risk and protective factors affecting the adjustment of siblings of children with chronic disabilities. Journal of the American Academy of Child and Adolescent Psychiatry, 35, 1532–1541.

    Article  PubMed  Google Scholar 

  • Fisman, S., Wolf, L., Elllison, D., & Freeman, T. (2000). A longitudinal study of siblings of children with chronic disabilities. Canadian Journal of Psychiatry, 45, 369–375.

    Google Scholar 

  • Gamliel, I., Yirmiya, N., Jaffe, D., Manor, O., & Sigman, M. (2009). Developmental trajectories in siblings of children with autism: Cognition and language from 4 months to 7 years. Journal of Autism and Developmental Disorders, 39, 1131–1144.

    Article  PubMed Central  PubMed  Google Scholar 

  • Gerhardt, P. D., & Lanier, I. (2011). Addressing the needs of adolescent and adults with autism: A crises on the horizon. Journal of Contemporary Psychotherapy, 41, 37–45.

    Article  Google Scholar 

  • Giallo, R., & Gavidia-Payne, S. (2006). Child, parent and family factors as predictors of adjustment for siblings of children with a disability. Journal of Intellectual Disability Research, 50, 937–948.

    Article  PubMed  Google Scholar 

  • Goodman, S. H., & Gotlib, I. H. (1999). Risk for psychopathology in the children of depressed mothers: A developmental model for understanding mechanisms of transmission. Psychological Review, 106, 458–490.

    Article  PubMed  Google Scholar 

  • Graetz, J. E. (2010). Autism grows up: Opportunities for adults with autism. Disability and Society, 25, 33–47.

    Article  Google Scholar 

  • Gray, D. E. (1994). Coping with autism: Stresses and strategies. Sociology of Health and Illness, 16, 275–300.

    Article  Google Scholar 

  • Gray, D. E., & Holden, W. J. (1992). Psycho-social well-being among the parents of children with autism. Australia and New Zealand Journal of Developmental Disabilities, 18, 83–93.

    Google Scholar 

  • Hare, D. J., Pratt, C., Burton, M., Bromley, J., & Emerson, E. (2004). The health and social care needs of family caregivers supporting adults with autistic spectrum disorders. Autism, 8, 425–444.

    Article  PubMed  Google Scholar 

  • Hastings, R. P. (2003). Behavioral adjustment of siblings of children with autism. Journal of Autism and Developmental Disorders, 33, 99–104.

    Article  PubMed  Google Scholar 

  • Hastings, R. P. (2007). Longitudinal relationships between sibling behavioral adjustment and behavioral problems of children with developmental disabilities. Journal of Autism and Developmental Disorders, 37, 1485–1492.

    Article  PubMed  Google Scholar 

  • Hastings, R. P., Kovshoff, H., Ward, N. J., delgi Espinosa, F., Brown, T., & Remington, B. (2005). Systems analysis of stress and positive perceptions in mothers and fathers of pre-school children with autism. Journal of Autism and Developmental Disorders, 35, 635–644.

    Article  PubMed  Google Scholar 

  • Hodapp, R. M., & Urbano, R. C. (2007). Adult siblings of individuals with Down syndrome: Findings from a large-scale American survey. Journal of Intellectual Disabilities Research, 51, 1018–1029.

    Article  Google Scholar 

  • Holmes, N., & Carr, J. (1991). The pattern of care in families of adults with a mental handicap: A comparison between families of autistic adults and Down syndrome adults. Journal of Autism and Developmental Disabilities, 21, 159–176.

    Article  Google Scholar 

  • Howlin, P. (2003). Outcome in high functioning adults with autism with and without early language delays: Implications for the differentiation between autism and Asperger syndrome. Journal of Autism and Developmental Disorders, 33, 3–13.

    Google Scholar 

  • Howlin, P. (2004). Autism and Asperger syndrome: Preparing for adulthood (2nd ed.), London: Routledge.

    Google Scholar 

  • Howlin, P., Goode, S., Hutton, J., & Rutter, M. (2004). Adult outcome for children with autism. Journal of Child Psychology and Psychiatry, 45(2), 212–229.

    Article  PubMed  Google Scholar 

  • Hutton, A. M., & Caron, S. L. (2005). Experiences of families of children with autism in rural New England. Focus on Autism and Other Developmental Disabilities, 20, 180–189.

    Article  Google Scholar 

  • Ivey, J. (2002). A comparison of teacher and parental expectations for children with autism. Dissertation Abstracts International, 93, 2198.

    Google Scholar 

  • Kaminsky, L., & Dewey, D. (2001). Sibling relationships of children with autism. Journal of Autism and Developmental Disorders, 31, 399–410.

    Article  PubMed  Google Scholar 

  • Kaminsky, L., & Dewey, D. (2002). Psychosocial adjustment in siblings of children with autism. Journal of Child Psychology and Psychiatry, and Allied Disciplines, 43, 225–232.

    Article  PubMed  Google Scholar 

  • Kanner, L. (1973). Childhood psychosis: Initial studies and new insights. New York: Winston/Wiley.

    Google Scholar 

  • Kim, J. Y., McHale, S. M., Wayne Osgood, D., & Crouter, A. C. (2006). Longitudinal course and family correlates of sibling relationships from childhood through adolescence. Child Development, 77, 1746–1761.

    Article  PubMed  Google Scholar 

  • Knott, F., Lewis, C., & Williams, T. (1995). Sibling interactions of children with learning disabilities: A comparison of autism and Down’s syndrome. Journal of Child Psychology and Psychiatry, 13, 965–976.

    Article  Google Scholar 

  • Koegel, R. L., Schreibman, L., Loos, L. M., Dirlich-Wilhelm, H., Dunlap, G., Robbins, F. R., et al. (1992). Consistent stress profiles in mothers of children with autism. Journal of Autism and Developmental Disorders, 22, 205–216.

    Article  PubMed  Google Scholar 

  • Kraus, M. W., Seltzer, M. M., & Jacobson, H. T. (2005). Adults with autism living at home or in non-family settings: Positive and negative aspects of residential status. Journal of Intellectual Disability Research, 49, 111–124.

    Article  Google Scholar 

  • Lecavalier, L., Leone, S., & Wiltz, J. (2006). The impact of behaviour problems on caregiver stress in young people with autism spectrum disorders. Journal of Intellectual Disability Research, 50, 172–183.

    Article  PubMed  Google Scholar 

  • Lehmann, A. L. (2009). The accidental teacher: Life lessons from my silent son. Ann Arbor, MI: The University of Michigan Press.

    Google Scholar 

  • Marcus, L., Kunce, L., & Schopler, E. (2005). Working with families. In F. Volkmar, R. Paul, A. Klin, & D. Cohen (Eds.), Handbook of autism and pervasive developmental disorders (pp. 1055–1086). Hoboken, NJ: Wiley.

    Google Scholar 

  • Mates, T. E. (1990). Siblings of autistic children: Their adjustment and performance at home and in school. Journal of Autism and Developmental Disorders, 20, 545–553.

    Article  PubMed  Google Scholar 

  • Meyer, K., Ingersoll, B., & Hambrick, D. Z. (2011). Factors influencing adjustment in siblings of children with autism spectrum disorders. Research in Autism Spectrum Disorders, 5, 1413–1420.

    Article  Google Scholar 

  • Montes, G., & Halterman, J. S. (2007). Psychological functioning and coping among mothers of children with autism: A population-based study. Pediatrics, 119, 1040–1046.

    Article  Google Scholar 

  • Morrell, M. D., & Palmer, A. (2006). Parents across the autism spectrum: Unexpected lessons we have learned. Philadelphia: Jessica Kingsley.

    Google Scholar 

  • Newport, J., & Newport, M. (2002). Autism-Asperger’s & sexuality. Arlington, TX: Future Horizons.

    Google Scholar 

  • Orsmond, G. I., Kuo, H. Y., & Seltzer, M. M. (2009). Siblings of individuals with an autism spectrum disorder: Sibling relationships and well-being in adolescence and adulthood. Autism: The International Journal of Research and Practice, 13, 59–80.

    Article  Google Scholar 

  • Orsmond, G. I., Lin, L., & Seltzer, M. M. (2007). Mothers of adolescents and adults with autism: Parenting multiple children with disabilities. Intellectual and Developmental Disabilities, 45, 257–270.

    Article  PubMed  Google Scholar 

  • Orsmond, G. I., & Seltzer, M. M. (2007). Siblings of individuals with autism or Down syndrome: Effects on adults lives. Journal of Intellectual Disability Research, 51, 682–696.

    Article  PubMed  Google Scholar 

  • Orsmond, G. I., & Seltzer, M. M. (2009). Adolescent siblings of individuals with an autism spectrum disorder: Testing a diathesis-stress model of sibling well-being. Journal of Autism and Developmental Disorders, 39, 1053–1065.

    Article  PubMed Central  PubMed  Google Scholar 

  • Palmer, A. (2006). Realizing the college dream with autism or Asperger syndrome: A parent guide to student success. Philadelphia: Jessica Kingley.

    Google Scholar 

  • Park, C. C. (2001). Existing Nirvana: A daughter’s life with autism. Boston: Little, Brown.

    Google Scholar 

  • Pilowsky, T., Yirmiya, N., Doppelt, O., Gross-Tsur, V., & Shalev, R. S. (2004). Social and emotional adjustment of siblings of children with autism. Journal of Child Psychology and Psychiatry, 45, 855–865.

    Article  PubMed  Google Scholar 

  • Piven, J., Gayle, J., Chase, G. A., Fink, B., Landa, R., Wzorek, M. M., et al. (1990). A family history of neuropsychiatric disorders in the adult siblings of autistic individuals. Journal of the American Academy of Child and Adolescent Psychiatry, 29, 177–183.

    Article  PubMed  Google Scholar 

  • Reichle, N. C., & Van Bourgondien, M. E. (1995). Maternal and paternal coping of families of adolescents and adults with autism. Unpublished manuscript, TEACCH program, University of North Carolina at Chapel Hill, Chapel Hill, NC, USA.

    Google Scholar 

  • Renty, J., & Roeyers, H. (2006). Quality of life in high functioning adults with autism spectrum disorders: The predictive value of disability and support characteristics. Autism, 10, 511–524.

    Article  PubMed  Google Scholar 

  • Renty, J., & Roeyers, H. (2007). Individual and marital adaptation in men with autism spectrum disorder and their spouses: The role of social support an coping strategies. Journal of Autism and Developmental Disorders, 37, 1247–1255.

    Article  PubMed  Google Scholar 

  • Rivers, J. W., & Stoneman, Z. (2003). Sibling relationships when a child has autism: Martial stress and support coping. Journal of Autism and Developmental Disorders, 33, 383–394.

    Article  PubMed  Google Scholar 

  • Rodrigue, J. R., Geffken, G. R., & Morgan, S. B. (1993). Perceived competence and behavioral adjustment of siblings of children with autism. Journal of Autism and Developmental Disorders, 23, 665–674.

    Article  PubMed  Google Scholar 

  • Roeyers, H., & Mycke, K. (1995). Siblings of a child with autism, with mental retardation and with normal development. Child: Care, Health, Development, 2, 305–319.

    Google Scholar 

  • Ross, P., & Cuskelly, M. (2006). Adjustment, sibling problems and coping strategies of brothers and sisters of children with autistic spectrum disorder. Journal of Intellectual and Developmental Disability, 31, 77–86.

    Article  PubMed  Google Scholar 

  • Saldana, D., Alvarez, R. M., Lobaton, S., Lopez, A. M., Moreno, M., & Rojano, M. (2009). Objective and subjective quality of life in adults with autism spectrum disorders in Southern Spain. Autism, 113, 303–316.

    Article  Google Scholar 

  • Scharf, M., Schulman, S., & Avigad-Spitz, L. (2005). Sibling relationships in emerging adulthood and adolescence. Journal of Adolescent Research, 20, 64–90.

    Article  Google Scholar 

  • Schopler, E. (1971). Parents of psychotic children as scapegoats. Journal of Contemporary Psychology, 4, 17–22.

    Article  Google Scholar 

  • Schopler, E., & Reichler, R. J. (1971). Parents as cotherapists in the treatment of psychotic children. Journal of Autism and Childhood Schizophrenia, 1, 87–102.

    Article  PubMed  Google Scholar 

  • Seltzer, M. M., Greenberg, J. S., Hong, J., Smith, L. E., Almeida, D. M., Coe, C., et al. (2010). Marital cortisol levels and behavior problems in adolescents and adults with ASD. Journal of Autism and Developmental Disorders, 40, 457–469.

    Article  PubMed Central  PubMed  Google Scholar 

  • Seltzer, M. M., & Krauss, M. W. (1994). Aging parents with co-resident adults children: The impact of lifelong caregiving. In M. M. Seltzer, M. W. Krauss, & M. P. Janicki (Eds.), Life course perspectives on adulthood and old age (pp. 3–18). Washington, DC: The American Association of Mental Retardation Monograph Series.

    Google Scholar 

  • Seltzer, M. M., Krauss, M. W., Orsmond, G. I., & Vestal, C. (2000). Families of adolescents and adults with autism. Uncharted Territory. In L. M. Glidden (Ed.), International review of research on mental retardation (Vol. 23, pp. 267–294). San Diego, CA: Academic Press.

    Google Scholar 

  • Seltzer, M. M., Krauss, M. W., Shattuck, P. T., Orsmond, G., Swe, A., & Lord, C. (2003). The symptoms of autism spectrum disorders in adolescence and adulthood. Journal of Autism and Developmental Disorders, 33, 565–581.

    Article  PubMed  Google Scholar 

  • 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, 19–28.

    Article  Google Scholar 

  • Shattuck, P. T., Wagner, M., Narendorf, S., Sterzing, P., & Hensley, M. (2011). Post-high school service use among young adults with an autism spectrum disorder. Archives of Pediatric & Adolescent Medicine, 165, 141–146.

    Article  Google Scholar 

  • Shea, V. (1993). Interpreting results to parents of preschool children. In E. Schopler, M. E. Van Bourgondien, & M. Bristol (Eds.), Preschool issues in autism (pp. 185–198). New York: Plenum Press.

    Chapter  Google Scholar 

  • Smith, L. E., Greenberg, J. S., & Seltzer, M. M. (2012). Social support and well-being at mid-life among mothers of adolescents and adults with autism spectrum disorders. Journal of Autism and Developmental Disorders, 42, 1818–1826.

    Google Scholar 

  • Smith, L. E., Hong, J., Seltzer, M. M., Greenberg, J. S., Almeida, D. M., & Bishop, S. L. (2010). Daily experiences among mothers of adolescents and adults with autism spectrum disorder. Journal of Autism of Developmental Disorders, 40, 167–178.

    Article  Google Scholar 

  • Smith, L. E., Seltzer, M. M., & Greenberg, J. S. (2012). Daily health symptoms of mothers of adolescents and adults with fragile X syndrome and mothers of adolescents and adults with autism spectrum disorder. Journal on Autism and Developmental Disorders, 42, 1836–1846.

    Google Scholar 

  • Smith, L. E., Seltzer, M. M., Tager-Flusberg, H., Greenberg, J. S., & Carter, A. S. (2008). A comparative analysis of well-being and coping among mothers of toddlers and mothers of adolescents with ASD. Journal of Autism and Developmental Disorders, 37, 876–889.

    Article  Google Scholar 

  • Sullivan, R. (1997). When your son/daughter leaves home: Heartbreak? Relief? Or both? Newsletter of Autism Services Center, Winter, 2.

    Google Scholar 

  • Tammet, D. (2006). Born on a blue day: Inside the extraordinary mind of an autistic savant. New York: Free Press: A Division of Simon & Schuster, Inc.

    Google Scholar 

  • VanBergeijk, E., Klin, A., Volkmar, F. (2008). Supporting more able student on the autism spectrum: College and beyond. Journal of Autism and Developmental Disorders, 38, 1359–1370.

    Google Scholar 

  • Van Bourgondien, M. E., & Griffin, L. (2011). Top ten things parents want professionals to know. Presentation at the Annual Leo Croghan conference, Raleigh, NC.

    Google Scholar 

  • Van Bourgondien, M. E., & Powell, P. (2012). Social relationships and sexuality. Poster presentation at the International Meeting for Autism Research, Toronto, Canada.

    Google Scholar 

  • Van Bourgondien, M. E., & Schopler, E. (1990). Critical issues in the residential care of people with autism. Journal of Autism and Developmental Disorders, 20, 391–399.

    Article  PubMed  Google Scholar 

  • Verté, S., Roeyers, H., & Buyesse, A. (2003). Behavioral problems, social competence, and self-concept in siblings of children with autism. Child: Care, Health, & Development, 29, 193–205.

    Google Scholar 

Download references

Author information

Authors and Affiliations

  1. TEACCH Autism Program, University of North Carolina, Chapel Hill, NC, USA

    Mary E. Van Bourgondien, Tamara Dawkins & Lee Marcus

Authors
  1. Mary E. Van Bourgondien
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Tamara Dawkins
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Lee Marcus
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Mary E. Van Bourgondien .

Editor information

Editors and Affiliations

  1. Child Study Center, Yale University, New Haven, Connecticut, USA

    Fred R. Volkmar

  2. AJ Pappanikou Center for Excellence in Developmental Disabilities, University of Connecticut Health Center, Farmington, Connecticut, USA

    Brian Reichow

  3. Child Study Center, Yale University, New Haven, Connecticut, USA

    James C. McPartland

Rights and permissions

Reprints and permissions

Copyright information

© 2014 Springer Science+Business Media New York

About this chapter

Cite this chapter

Van Bourgondien, M.E., Dawkins, T., Marcus, L. (2014). Families of Adults with Autism Spectrum Disorders. In: Volkmar, F., Reichow, B., McPartland, J. (eds) Adolescents and Adults with Autism Spectrum Disorders. Springer, New York, NY. https://doi.org/10.1007/978-1-4939-0506-5_2

Download citation

Publish with us

Policies and ethics

Search

Navigation