Skip to main content
SpringerLink
Log in

Trajectories, Long-Term Outcomes and Family Experiences of 76 Adults with Autism Spectrum Disorder

  • Original Paper
  • Published:
Journal of Autism and Developmental Disorders Aims and scope Submit manuscript

Abstract

The aim of this retrospective study was to retrace the trajectories and long-term outcomes of individuals with autism in France, and to explore the family experiences. Data obtained from parents enables us to follow the trajectories of 76 adults. Two-thirds of adults with severe autism had a very poor outcome. Those with moderate autism had a better outcome. In adulthood, the majority were in residential accommodation. None were living independently. The trajectories of people with Asperger syndrome or high-functioning autism were more positive since all of them attended school for a long time and some went to university. All of them had a good outcome but they remained dependent on aging parents who had few available supports.

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

Access this article

Log in via an institution

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Fig. 1
Fig. 2
Fig. 3
Fig. 4
Fig. 5

Similar content being viewed by others

References

  • Anderson, D. K., Oti, R. S., Lord, C., & Welch, K. (2009). Patterns of growth in adaptive social abilities among children with ASD. Journal of Abnormal Child Psychology, 37(7), 1019–1034.

    Article  PubMed Central  PubMed  Google Scholar 

  • Aussilloux, C., & Rocques, F. (1991). Devenir des enfants psychotiques à l’âge adulte. Revue de neuropsychiatrie de l’Ouest, 106, 27–33.

    Google Scholar 

  • Chamak, B. (2008). Autism and social movements: French parents’ associations and international autistic individuals’ organizations. Sociology of Health and Illness, 30(1), 76–96.

    Article  PubMed  Google Scholar 

  • Chamak, B. (2010). Autism, disability and social movements. Alter, European Journal of Disability Research, 4(2), 103–115.

    Article  Google Scholar 

  • Chamak, B., Bonniau, B., Oudaya, L., & Ehrenberg, A. (2011). The autism diagnostic experiences of French parents. Autism, 15(1), 83–97.

    Article  PubMed  Google Scholar 

  • Chamak, B., & Bonniau, B. (2013). Changes in the diagnosis of autism: How parents and professionals act and react in France. Culture, Medicine, and Psychiatry, 37(3), 405–426.

    Article  Google Scholar 

  • Baghdadli, A., Assouline, B., Sonié, S., Pernon, E., Darrou, C., Michelon, C., et al. (2012). Developmental trajectories of adaptive behaviors from early childhood to adolescence in a cohort of 152 children with autism spectrum disorders. Journal of Autism and Developmental Disorders, 42(7), 1314–1325.

    Article  PubMed  Google Scholar 

  • Ballaban-Gil, K., Rapin, I., Tuchman, R., & Shinnar, S. (1996). Longitudinal examination of the behavioral, language, and social changes in a population of adolescents and young adults with autistic disorder. Pediatric Neurology, 15(3), 217–223.

    Article  PubMed  Google Scholar 

  • Billstedt, E., Gillberg, C., & Gillberg, C. (2005). Autism after adolescence: Population-based 13–22-year Follow-up study of 120 individuals with autism diagnosed in childhood. Journal of Autism and Developmental Disorders, 35(3), 351–359.

    Article  PubMed  Google Scholar 

  • Billstedt, E., Gillberg, C., & Gillberg, I. (2011). Aspects of quality of life in adults diagnosed with autism in childhood. Autism, 15(1), 7–20.

    Article  PubMed  Google Scholar 

  • Bruder, M. B., Kerins, G., Mazzarella, C., Sims, J., & Stein, N. (2012). Brief report: The medical care of adults with autism spectrum disorders: Identifying the needs. Journal of Autism and Developmental Disorders, 42(11), 2498–2504.

    Article  PubMed  Google Scholar 

  • Camarata, S. (2014). Early identification and early intervention in autism spectrum disorders: Accurate and effective? International Journal of Speech-Language Pathology, 16(1), 1–10.

    Article  PubMed  Google Scholar 

  • Cappadocia, C., Weiss, J. A., & Depler, D. (2012). Bullying experiences among children and youth with autism spectrum disorders. Journal of Autism and Developmental Disorders, 42(2), 266–277.

    Article  PubMed  Google Scholar 

  • Cederlund, M., Hagberg, B., Billstedt, E., Gillberg, I. C., & Gillberg, C. (2008). Asperger syndrome and autism: A comparative longitudinal follow-up study more than 5 years after original diagnosis. Journal of Autism and Developmental Disorders, 38(1), 72–85.

    Article  PubMed  Google Scholar 

  • Daley, T. C., Weisner, T., & Singhal, N. (2014). Adults with autism in India: A mixed-method approach to make meaning of daily routines. Social Science and Medicine, 116, 142–149.

    Article  PubMed  Google Scholar 

  • Darrou, C., Pry, R., Pernon, E., Michelon, C., Aussilloux, C., & Baghdadli, A. (2010). Outcome of young children with autism. Does the amount of intervention influence developmental trajectories? Autism, 14(6), 663–677.

    PubMed  Google Scholar 

  • Davis, N. O., & 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(7), 1278–1291.

    Article  PubMed  Google Scholar 

  • Eaves, L. C., & Ho, H. H. (2008). Young adult outcome of autism spectrum disorders. Journal of Autism and Developmental Disorders, 38(4), 739–747.

    Article  PubMed  Google Scholar 

  • Engström, I., Ekström, L., & Emilsson, B. (2003). Psychosocial functioning in a group of Swedish adults with Asperger syndrome or high-functioning autism. Autism, 7(1), 99–110.

    PubMed  Google Scholar 

  • Esbensen, A. J., Greenberg, J. S., Seltzer, M. M., & Aman, M. G. (2009). A longitudinal investigation of psychotropic and non-psychotropic medication use among adolescents and adults with autism spectrum disorders. Journal of Autism and Developmental Disorders, 39(9), 1339–1349.

    Article  PubMed Central  PubMed  Google Scholar 

  • Farley, M., McMahon, W., Fombonne, E., Jenson, W., Miller, J., Gardner, M., et al. (2009). Twenty-year outcome for individuals with autism and average or near-average cognitive abilities. Autism Research, 2, 109–118.

    Article  PubMed  Google Scholar 

  • Fountain, C., Winter, A., & Bearman, P. (2012). Six developmental trajectories characterize children with autism. Pediatrics, 129(5), 1–9.

    Article  Google Scholar 

  • Gabriels, R. L., Hill, D. E., Pierce, R. A., Rogers, S. J., & Wehner, B. (2001). Predictors of treatment outcome in young children with autism: A retrospective study. Autism, 5, 407–429.

    Article  PubMed  Google Scholar 

  • Gillberg, C. (1991). Outcome in autism and autistic-like conditions. Journal of the American Academy of Child and Adolescent Psychiatry, 30(3), 375–382.

    Article  PubMed  Google Scholar 

  • 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.

    Article  PubMed  Google Scholar 

  • Graetz, J. E. (2010). Autism grows up: Opportunities for adults with autism. Disability & Society, 25(1), 33–47.

    Article  Google Scholar 

  • Gray, K., Keating, C., Taffe, J., Brereton, A., Einfeld, S., Reardon, T., & Tonge, B. (2014). Adult outcomes in autism: Community inclusion and living skills. Journal of Autism and Developmental Disorders, 44(12), 3006–3015.

    Article  PubMed  Google Scholar 

  • Gray, K., Keating, C., Taffe, J., Brereton, A., Einfeld, S., & Tonge, B. (2012). Trajectory of behaviour and emotional problems in autism. American Journal of Intellectual and Developmental Disability, 117(2), 121–133.

    Article  Google Scholar 

  • Guinchat, V., Chamak, B., Bonniau, B., Cohen, D., & Danion, A. (2012). Very early signs of autism reported by parents include many concerns not specific to autism criteria. Research in Autism Spectrum Disorders, 6, 589–601.

    Article  Google Scholar 

  • Hare, D. J., Pratt, C., Burton, M., Bromley, J., & Emerson, E. (2004). The health and social care needs of family carers supporting adults with autistic spectrum disorders. Autism, 8(4), 425–444.

    Article  PubMed  Google Scholar 

  • Hastings, R. P., Kovshoff, H., Ward, N. J., Degli 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(5), 635–644.

    Article  PubMed  Google Scholar 

  • Howlin, P. (2000). Outcome in adult life for more able individuals with autism or Asperger syndrome. Autism, 4(1), 63–83.

    Article  Google Scholar 

  • Howlin, P. (2007). The Outcome in adult life for people with ASD. In F. Volkmar (Ed.), Autism and pervasive developmental disorders (pp. 269–306). Cambridge: Cambridge University Press.

    Chapter  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 

  • Howlin, P., Moss, P., Savage, S., & Rutter, M. (2013). Social outcomes in mid to later adulthood among individuals diagnosed with autism and average nonverbal IQ as children. Journal of American Academy of Child and Adolescent Psychiatry, 52(6), 572–581.

    Article  Google Scholar 

  • Hutton, J., Goode, S., Murphy, M., Le Couteur, A., & Rutter, M. (2008). New-onset psychiatric disorders in individuals with autism. Autism, 12(4), 373–390.

    Article  PubMed  Google Scholar 

  • Kobayashi, R., Murata, T., & Yoshinaga, K. (1992). A follow-up study of 201 children with autism in Kyushu and Yamaguchi areas, Japan. Journal of Autism and Developmental Disorders, 22(3), 395–411.

    Article  PubMed  Google Scholar 

  • Lake, J. K., Balogh, R., & Lunsky, Y. (2012). Polypharmacy profiles and predictors among adults with autism spectrum disorders. Research in Autism Spectrum Disorders, 6(3), 1142–1149.

    Article  Google Scholar 

  • Larsen, F. W., & Mouridsen, S. E. (1997). The outcome in children with childhood autism and Asperger syndrome originally diagnosed as psychotic. A 30-year follow-up study of subjects hospitalized as children. European Child and Adolescent Psychiatry, 6(4), 181–190.

    Article  PubMed  Google Scholar 

  • Liptak, G. S., Kennedy, J. A., & Dosa, N. P. (2011). Social participation in a nationally representative sample of older youth and young adults with autism. Journal of Developmental and Behavioral Pediatrics, 32(4), 277–283.

    Article  PubMed  Google Scholar 

  • Ortega, F. (2009). The cerebral subject and the challenge of neurodiversity. Biosocieties, 4(4), 425–445.

    Article  Google Scholar 

  • Rondeau, E., Klein, L., Masse, A., Bodeau, N., Cohen, D., & Guilé, J. M. (2011). Is pervasive developmental disorder not otherwise specified less stable than autistic disorder? A meta-analysis. Journal of Autism and Developmental Disorders, 41(9), 1267–1276.

    Article  PubMed  Google Scholar 

  • Schroeder, J. H., Cappadocia, M. C., Bebko, J. M., Pepler, D. J., & Weiss, J. A. (2014). Shedding light on a pervasive problem: A review of research on bullying experiences among children with autism spectrum disorders. Journal of Autism and Developmental Disorders, 44(7), 1520–1534.

    Article  PubMed  Google Scholar 

  • Seltzer, M. M., Shattuck, P., Abbeduto, L., & Greenberg, J. S. (2004). Trajectory of development in adolescents and adults with autism. Mental Retardation and Developmental Disabilities Research Reviews, 10(4), 234–247.

    Article  PubMed  Google Scholar 

  • Stein, D., Ring, A., Shulman, C., Meir, D., Holan, A., Weizman, A., et al. (2001). Brief report: Children with autism as they grow up—description of adult inpatients with severe autism. Journal of Autism and Developmental Disorders, 31(3), 355–360.

    Article  PubMed  Google Scholar 

  • Stoddart, K. P., Burke, L., & King, R. (2012). Asperger syndrome in adulthood: A comprehensive guide for clinicians. New York: Norton Publishers.

    Google Scholar 

  • Stoddart, K. P., Burke, L., Muskat, B., Manett, J., Duhaime, S., Accardi, C., et al. (2013). Diversity in Ontario’s youth and adults with autism spectrum disorders: Complex needs in unprepared systems. Toronto, ON: The Redpath Centre.

    Google Scholar 

  • Szatmari, P., Bartolucci, G., Brenner, R., Bond, S., & Rich, S. (1989). A follow-up study of high-functioning autistic children. Journal of Autism and Developmental Disorders, 19(2), 213–225.

    Article  PubMed  Google Scholar 

  • Tantam, D. (1991). Asperger syndrome in adulthood. In U. Frith (Ed.), Autism and Asperger syndrome (pp. 147–183). Cambridge: Cambridge University Press.

    Chapter  Google Scholar 

  • Thévenot, J. P., Philippe, A., & Casadebaig, F. (2008). Accès aux institutions des enfants et adolescents avec autisme ou troubles apparentés: une étude de cohorte en Ile-de-France de 2002 à 2007. Montrouge: John Libbey Eurotext.

    Google Scholar 

  • Vivanti, G., Prior, M., Williams, K., & Dissanayake, C. (2014). Predictors of outcomes in autism early intervention: Why don’t we know more? Frontiers in Pediatrics, 2, 1–10.

    Article  Google Scholar 

  • Wing, L. (1983). Social and interpersonal needs. In E. Schopler & G. Mesibov (Eds.), Autism in adolescents and adults (pp. 337–353). New York: Plenum Press.

    Chapter  Google Scholar 

Download references

Acknowledgments

This research was supported by INSERM (Institut National de la Santé et de la Recherche Médicale), and the Fondation de France. We wish to thank Pr. A. Danion and Dr. V. Pascal from Louis Pasteur University (IRIST-Strasbourg) for their participation in the design and the distribution of the questionnaire, as well as Pr. David Cohen from the Pitié-Salpêtrière Hospital. We are grateful to the parents’ associations and the professionals who distributed the questionnaire, and the parents who took the time to fill it in and answer our questions. We would also like to thank also Christine Calderon for her transcriptions of interviews, as well as Angela Swaine Verdier and Ken Day for rereading the manuscript.

Author Contributions

Brigitte Chamak led the conceptualization and design of the study, conducted the in-depth interviews, collected and analyzed the data, drafted the initial manuscript, revised the manuscript. Béatrice Bonniau contributed to the design of the study, collected and analyzed the data, and approved the final manuscript.

Author information

Authors and Affiliations

  1. CERMES3 - INSERM U988 - CNRS UMR 8211 - EHESS, Paris Descartes University, 45 rue des Saints-Pères, 75270, Paris Cedex 06, France

    Brigitte Chamak & Béatrice Bonniau

Authors
  1. Brigitte Chamak
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Béatrice Bonniau
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Brigitte Chamak.

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Chamak, B., Bonniau, B. Trajectories, Long-Term Outcomes and Family Experiences of 76 Adults with Autism Spectrum Disorder. J Autism Dev Disord 46, 1084–1095 (2016). https://doi.org/10.1007/s10803-015-2656-6

Download citation

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s10803-015-2656-6

Keywords

Search

Navigation