Journal of Autism and Developmental Disorders

, Volume 41, Issue 10, pp 1397–1410 | Cite as

Changes in the Mother–Child Relationship During the Transition to Adulthood for Youth with Autism Spectrum Disorders

  • Julie Lounds TaylorEmail author
  • Marsha Mailick Seltzer
Original Paper


We examined whether exiting high school was associated with changes in the mother–child relationship. Participants were 170 mothers of youth with ASD who were part of our larger longitudinal study and who exited high school during the study; data were collected four times over 7 years. Results indicated improvement in the mother–child relationship while in high school; however, improvement in all indices slowed or stopped after exit. Mothers of youth with ASD without an intellectual disability (ID) and who had more unmet service needs evidenced the least improvement after exit. Our findings provide further evidence that the years after high school exit are a time of increased risk, especially for those with ASD without ID and whose families are under-resourced.


Autism spectrum disorder Transition to adulthood Mother–child relationship Burden Warmth 



This project was supported by the Marino Autism Research Institute (J.L. Taylor, PI), the National Institute on Aging (R01 AG08768, M.M. Seltzer, PI) and the Eunice Kennedy Shriver National Institute of Child Health and Human Development (P30 HD15052, E.M. Dykens, PI; P30 HD03352, M.M. Seltzer PI).


  1. Abbeduto, L., Seltzer, M. M., Shattuck, P. T., Krauss, M. K., Orsmond, G. I., & Murphy, M. M. (2004). Psychological well-being and coping in mothers of youths with Autism, down syndrome, of Fragile X syndrome. American Journal on Mental Retardation, 103, 237–254.CrossRefGoogle Scholar
  2. Barrowclough, C., & Hooley, J. M. (2003). Attributions and expressed emotion: A review. Clinical Psychology Review, 23, 849–880.PubMedCrossRefGoogle Scholar
  3. Beck, A., Daley, D., Hastings, R. P., & Stevenson, J. (2004). Mothers’ expressed emotion towards children with and without intellectual disabilities. Journal of Intellectual Disability Research, 48, 628–638.PubMedCrossRefGoogle Scholar
  4. Bengtson, V. L., & Allen, K. R. (1993). The life course perspective applied to families over time. In P. Boss, W. Doherty, R. LaRossa, W. Schumm, & S. Steinmetz (Eds.), Sourcebook of family theories and methods: A contextual approach (pp. 469–498). New York: Plenum Press.CrossRefGoogle Scholar
  5. Bengtson, V. L., & Schrader, S. S. (1982). Parent-child relationships. In D. J. Mangon & W. A. Peterson (Eds.), Research instruments in social gerontology (Vol. 2) (pp. 115–185). Minneapolis: University of Minnesota Press.Google Scholar
  6. Bouma, R., & Schweitzer, R. (1990). The impact of chronic childhood illness of family stress: A comparison between autism and cystic fibrosis. Journal of Clinical Psychology, 46, 722–730.PubMedCrossRefGoogle Scholar
  7. Bruininks, R. H., Woodcock, R. W., Weatherman, R. F., & Hill, B. K. (1996). Scales of independent behavior revised. Rolling Meadows, IL: Riverside Publishing.Google Scholar
  8. Bryk, A. S., & Raudenbush, S. W. (1987). Application of hierarchical linear models to assessing change. Psychological Bulletin, 101, 147–158.CrossRefGoogle Scholar
  9. Bryson, S. E., & Smith, I. M. (1998). Epidemiology of autism: Prevalence, associated characteristics, and implications for research and service delivery. Mental Retardation and Developmental Disabilities Research Reviews, 4, 97–103.CrossRefGoogle Scholar
  10. Butzlaff, R., & Hooley, J. (1998). Expressed emotion and psychiatric relapse. Archives of General Psychiatry, 55, 547–552.PubMedCrossRefGoogle Scholar
  11. Caspi, A., Moffit, T., Morgan, J., Rutter, M., Taylor, A., Arseneault, L., et al. (2004). Maternal expressed emotion predicts children’s antisocial behavior problems: Using monozygotic-twin differences to identify environmental effects on behavioral development. Developmental Psychology, 40, 149–161.PubMedCrossRefGoogle Scholar
  12. 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.PubMedGoogle Scholar
  13. Dossetor, D. R., Nichol, A. R., Stretch, D. D., & Rajkhowa, S. J. (1994). A study of expressed emotion in the parental primary carers of adolescents with intellectual impairment. Journal of Intellectual Disability Research, 38, 487–499.PubMedCrossRefGoogle Scholar
  14. 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.CrossRefGoogle Scholar
  15. Eaves, L. C., & Ho, H. H. (2008). Young adult outcomes of autism spectrum disorders. Journal of Autism and Developmental Disorders, 38, 739–747.PubMedCrossRefGoogle Scholar
  16. Farley, M. A., McMahon, W. M., Fombonne, E., Jenson, W. J., Miller, J., Gardner, M., et al. (2009). Twenty-year outcome for individuals with autism and average of near-average cognitive abilities. Autism Research, 2, 109–118.PubMedCrossRefGoogle Scholar
  17. Fombonne, E. (2003). Epidemiological surveys of autism and other pervasive developmental disorders: An update. Journal of Autism and Developmental Disorders, 33, 365–382.PubMedCrossRefGoogle Scholar
  18. Fong, L., Wilgosh, L., & Sobsey, D. (1993). The experience of parenting an adolescent with autism. International Journal of Disability, Development, and Education, 40, 105–113.CrossRefGoogle Scholar
  19. Francis, D. J., Fletcher, J. M., Steubing, K. K., Davidson, K. C., & Thompson, N. M. (1991). Analysis of change: Modeling individual growth. Journal of Consulting and Clinical Psychology, 59, 27–37.PubMedCrossRefGoogle Scholar
  20. Fussell, E., & Furstenberg, F. F. (2005). The transition to adulthood during the twentieth century. In R. A. Settersten, F. F. Furstenberg, & R. G. Rumbaut (Eds.), On the frontier of adulthood: Theory, research and public policy (pp. 29–75). Chicago: University of Chicago Press.Google Scholar
  21. Gillberg, C., & Steffenburg, S. (1987). Outcome and prognostic factors in infantile autism and similar conditions: A population-based study of 46 cases followed through puberty. Journal of Autism and Developmental Disorders, 17, 273–287.PubMedCrossRefGoogle Scholar
  22. Glutting, J. J., Adams, W., & Sheslow, D. (2000). Wide range intelligence test. Wilmington, DE: Wide Range.Google Scholar
  23. Greenberg, J. S., Seltzer, M. M., Hong, J., & Orsmond, G. I. (2006). Bidirectional effects of expressed emotion and behavior problems and symptoms in adolescents and adults with autism. American Journal on Mental Retardation, 111, 229–249.PubMedCrossRefGoogle Scholar
  24. Greenberg, J. S., Seltzer, M. M., Krauss, M. W., Chou, R. J., & Hong, J. (2004). The effect of quality of the relationship between mothers and adult children with disabilities: The mediating role of optimism. American Journal of Orthopsychiatry, 74, 14–25.PubMedCrossRefGoogle Scholar
  25. Hahlweg, K., Goldstein, M. J., Nuechterlein, K. H., Magana, A. B., Mintz, J., Doane, J. A., et al. (1989). Expressed emotion and patient-relative interaction in families of recent onset schizophrenics. Journal of Consulting and Clinical Psychology, 57, 11–18.PubMedCrossRefGoogle Scholar
  26. Hastings, R. P., Daley, D., Burns, C., & Beck, A. (2006). Maternal distress and expressed emotion: Cross-sectional and longitudinal relationships with behavior problems of children with intellectual disabilities. American Journal on Mental Retardation, 111, 48–61.PubMedCrossRefGoogle Scholar
  27. Holroyd, J., & McArthur, D. (1976). Mental retardation and stress on the parents: A contrast between Down’s syndrome and childhood autism. American Journal on Mental Deficiency, 80, 431–436.Google Scholar
  28. Howlin, P. (2005). Outcomes in autism spectrum disorders. In F. R. Volkmar, R. Paul, A. Klin, & D. Cohen (Eds.), Handbook of autism and developmental disorders, vol. 1: Diagnosis, development, neurobiology, and behavior (3rd ed., pp. 201–220). Hoboken, NJ: Wiley.Google Scholar
  29. Howlin, P., Alcock, J., & Burkin, C. (2005). An 8 year follow-up of a specialist supported employment service for high-ability adults with autism or Asperger syndrome. Autism, 9, 533–549.PubMedCrossRefGoogle Scholar
  30. Howlin, P., Goode, S., Hutton, J., & Rutter, M. (2004). Adult outcome for children with Autism. Journal of Child Psychology and Psychiatry, 45, 212–229.PubMedCrossRefGoogle Scholar
  31. Kidwell, J., Fischer, J. L., Dunham, R. M., & Baranowski, M. (1983). Parents and adolescents: Push and pull of change. In H. I. McCubbin & D. R. Figley (Eds.), Stress in the family: Coping with normative transitions (pp. 74–89). New York: Bruner.Google Scholar
  32. Krauss, M. W., Seltzer, M. M., & Jacobson, H. T. (2005). Adults with autism living at home or in non-familial settings: Positive and negative aspects of residential status. Journal of Intellectual Disability Research, 49, 111–124.PubMedCrossRefGoogle Scholar
  33. Lam, D., Giles, A., & Lavender, A. (2003). Carers’ expressed emotion, appraisal of behavioural problems and stress in children attending schools for learning disabilities. Journal of Intellectual Disability Research, 47, 456–463.PubMedCrossRefGoogle Scholar
  34. Liptak, G. S., Benzoni, L. B., Mruzek, D. W., Nolan, K. W., Thingvoll, M. A., Wade, C. M., et al. (2008). Disparities in diagnosis and access to health services for children with autism: Data from the national survey of children’s health. Journal of Developmental and Behavioral Pediatrics, 29, 152–160.PubMedCrossRefGoogle Scholar
  35. Lord, C., Rutter, M., & Le Couteur, A. (1994). Autism diagnostic interview-revised: A revised version of a diagnostic interview for caregivers of individuals with possible pervasive developmental disorders. Journal on Mental Retardation, 112, 401–417.Google Scholar
  36. Lounds, J., Seltzer, M. M., Greenberg, J. S., & Shattuck, P. T. (2007). Transition and change in adolescents and young adults with autism: Longitudinal effects on maternal well-being. American Journal on Mental Retardation, 112, 401–417.PubMedCrossRefGoogle Scholar
  37. Luckasson, R., Borthwick-Duffy, S., Buntinx, W. H. E., Coulter, D. L., Craig, E. M., Reeve, A., et al. (2002). Mental retardation: Definition, classification, and systems of supports (10th ed.). Washington, DC: American Association on Mental Retardation.Google Scholar
  38. Mandell, D. S., Novak, M. M., & Zubritsky, C. D. (2005). Factors associated with age of diagnosis among children with autism spectrum disorders. Pediatrics, 116, 1480–1486.PubMedCrossRefGoogle Scholar
  39. McCarty, C., Lau, A., Valeri, S., & Weisz, J. (2004). Parent-child interactions in relation to critical and emotionally overinvolved expressed emotion (EE): Is EE a proxy for behavior? Journal of Abnormal Child Psychology, 32, 83–93.PubMedCrossRefGoogle Scholar
  40. Montemayor, R., Eberly, M., & Flannery, D. J. (1993). Effects of pubertal status and conversation topic on parent and adolescent affective expression. Journal of Early Adolescence, 13, 431–447.CrossRefGoogle Scholar
  41. Moore, E., & Kuipers, E. (1999). The measurement of expressed emotion in relationships between staff and services users: The use of short speech samples. British Journal of Clinical Psychology, 38, 345–356.PubMedCrossRefGoogle Scholar
  42. Orsmond, G., Seltzer, M., Greenberg, J., & Krauss, M. (2006). Mother-child relationship quality among adolescents and adults with autism. American Journal on Mental Retardation, 111, 121–137.PubMedCrossRefGoogle Scholar
  43. Raudenbush, S. W., & Bryk, A. S. (2002). Hierarchical linear models: Applications and data analysis methods (2nd ed.). Thousand Oaks, CA: Sage.Google Scholar
  44. Rodrigue, J. R., Morgan, S. B., & Geffken, G. R. (1990). Families of autistic children: Psychological functioning of mothers. Journal of Clinical Psychology, 19, 371–379.Google Scholar
  45. Rossi, A. S., & Rossi, P. H. (1990). Of human bonding: Parent-child relations across the life course. New York: de Gruyter.Google Scholar
  46. Ryff, C. D., & Seltzer, M. M. (Eds.). (1996). The parental experience at midlife. Chicago: University of Chicago Press.Google Scholar
  47. Seltzer, M. M., Greenberg, J. S., Taylor, J. L., Smith, L., Orsmond, G. I., Esbensen, A., & Hong, J. (in press). Adolescents and adults with Autism spectrum disorders. In D. G. Amaral, G. Dawson, & D. H. Geschwind (Eds.), Autism Spectrum Disorders. New York: Oxford University Press.Google Scholar
  48. Seltzer, M. M., Krauss, M. W., Orsmond, G. I., & Vestal, C. (2001). Families of adolescents and adults with autism: Uncharted territory. International Review of Research in Mental Retardation, 23, 267–294.CrossRefGoogle Scholar
  49. 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.PubMedCrossRefGoogle Scholar
  50. Singer, J. D., & Willett, J. B. (2003). Applied longitudinal data analysis: Modeling change and even occurrence. Oxford, England: Oxford University Press.Google Scholar
  51. Smith, G. C. (1997). Aging families of adults with mental retardation: Patterns and correlates of service use, need, and knowledge. American Journal on Mental Retardation, 102, 13–26.PubMedCrossRefGoogle Scholar
  52. Smith, L., Greenberg, J., Seltzer, M., & Hong, J. (2008). Symptoms and behavior problems of adolescents and adults with autism: Effects of mother-child relationship quality, warmth, and praise. American Journal on Mental Retardation, 113, 387–402.PubMedCrossRefGoogle Scholar
  53. Sparrow, S. S., Carter, A. S., & Cicchetti, D. V. (1993). Vineland screener: Overview, reliability, validity, administration, and scoring. New Haven: Yale University Child Study Center.Google Scholar
  54. Stephens, M. P., & Kinney, J. M. (1989). Caregiver stress instruments: Assessment of content and measurement quality. Gerontology Review, 2, 40–54.Google Scholar
  55. Tarrier, N., Barrowclough, C., Ward, J., Donaldson, C., Burns, A., & Gregg, L. (2002). Expressed emotion and attributions in the carers of patients with Alzheimer’s disease: The effect of carer burden. Journal of Abnormal Psychology, 111, 340–349.PubMedCrossRefGoogle Scholar
  56. Taylor, J. L., & Seltzer, M. M. (2010a). Changes in the autism behavioral phenotype during the transition to adulthood. Journal of Autism and Developmental Disorders, 40, 1431–1446.PubMedCrossRefGoogle Scholar
  57. Taylor, J. L., & Seltzer, M. M. (2010b). Employment and post-secondary education activities for young adults with Autism Spectrum Disorders during the transition to adulthood. Journal of Autism and Developmental Disorders. doi:  10.1007/s10803-010-1070-3.
  58. Thomas, K. C., Ellis, A. R., McLaurin, C., Daniels, J., & Morrissey, J. P. (2007). Access to care for autism-related services. Journal of Autism and Developmental Disorders, 37, 1902–1912.PubMedCrossRefGoogle Scholar
  59. Van Humbeeck, G., Van Audenhove, C., De Hert, M., Pieters, G., & Storms, G. (2002). Expressed emotion: A review of assessment instruments. Clinical Psychology Review, 22, 321–341.CrossRefGoogle Scholar
  60. Vaughn, C. E., & Leff, J. P. (1976). The influence of family and social factors on the course of psychiatric illness. British Journal of Psychiatry, 129, 125–137.PubMedCrossRefGoogle Scholar
  61. Wearden, A., Tarrier, N., Barrowclight, C., Zastowny, T., & Rahill, A. (2000). A review of expressed emotion research in health care. Clinical Psychology Review, 20, 633–666.PubMedCrossRefGoogle Scholar
  62. Weisman, A., Lopez, S. R., Karno, M., & Jenkins, J. (1993). An attributional analysis of expressed emotion in Mexican-American families with schizophrenia. Journal of Abnormal Psychology, 102, 601–606.PubMedCrossRefGoogle Scholar
  63. Wolf, L. C., Noh, S., Fisman, S. N., & Speechley, M. (1989). Psychological effects of parenting stress on parents of autistic children. Journal of Autism and Developmental Disorders, 19, 157–166.PubMedCrossRefGoogle Scholar
  64. Woo, S. M., Goldstein, M. J., & Nuechterlein, K. H. (2004). Relatives’ affective style and the expression of subclinical psychopathology in patients with schizophrenia. Family Process, 43, 233–247.PubMedCrossRefGoogle Scholar
  65. Zarit, S. H., Reever, K. E., & Bach-Peterson, J. (1980). Relatives of the impaired elderly: Correlates of feelings of burden. The Gerontologist, 20, 649–655.PubMedCrossRefGoogle Scholar

Copyright information

© Springer Science+Business Media, LLC 2010

Authors and Affiliations

  • Julie Lounds Taylor
    • 1
    • 2
    Email author
  • Marsha Mailick Seltzer
    • 3
  1. 1.Vanderbilt Kennedy CenterNashvilleUSA
  2. 2.Department of PediatricsVanderbilt University School of Medicine and the Monroe Carell Jr. Children’s Hospital at VanderbiltNashvilleUSA
  3. 3.Waisman CenterUniversity of Wisconsin-MadisonMadisonUSA

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