Journal of Autism and Developmental Disorders

, Volume 46, Issue 3, pp 1084–1095 | Cite as

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

  • Brigitte ChamakEmail author
  • Béatrice Bonniau
Original Paper


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.


Autism Asperger syndrome Outcome Trajectory Adults 



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.


  1. 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.PubMedCentralCrossRefPubMedGoogle Scholar
  2. Aussilloux, C., & Rocques, F. (1991). Devenir des enfants psychotiques à l’âge adulte. Revue de neuropsychiatrie de l’Ouest, 106, 27–33.Google Scholar
  3. Chamak, B. (2008). Autism and social movements: French parents’ associations and international autistic individuals’ organizations. Sociology of Health and Illness, 30(1), 76–96.CrossRefPubMedGoogle Scholar
  4. Chamak, B. (2010). Autism, disability and social movements. Alter, European Journal of Disability Research, 4(2), 103–115.CrossRefGoogle Scholar
  5. Chamak, B., Bonniau, B., Oudaya, L., & Ehrenberg, A. (2011). The autism diagnostic experiences of French parents. Autism, 15(1), 83–97.CrossRefPubMedGoogle Scholar
  6. 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.CrossRefGoogle Scholar
  7. 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.CrossRefPubMedGoogle Scholar
  8. 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.CrossRefPubMedGoogle Scholar
  9. 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.CrossRefPubMedGoogle Scholar
  10. Billstedt, E., Gillberg, C., & Gillberg, I. (2011). Aspects of quality of life in adults diagnosed with autism in childhood. Autism, 15(1), 7–20.CrossRefPubMedGoogle Scholar
  11. 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.CrossRefPubMedGoogle Scholar
  12. 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.CrossRefPubMedGoogle Scholar
  13. 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.CrossRefPubMedGoogle Scholar
  14. 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.CrossRefPubMedGoogle Scholar
  15. 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.CrossRefPubMedGoogle Scholar
  16. 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.PubMedGoogle Scholar
  17. 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.CrossRefPubMedGoogle Scholar
  18. Eaves, L. C., & Ho, H. H. (2008). Young adult outcome of autism spectrum disorders. Journal of Autism and Developmental Disorders, 38(4), 739–747.CrossRefPubMedGoogle Scholar
  19. 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.PubMedGoogle Scholar
  20. 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.PubMedCentralCrossRefPubMedGoogle Scholar
  21. 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.CrossRefPubMedGoogle Scholar
  22. Fountain, C., Winter, A., & Bearman, P. (2012). Six developmental trajectories characterize children with autism. Pediatrics, 129(5), 1–9.CrossRefGoogle Scholar
  23. 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.CrossRefPubMedGoogle Scholar
  24. Gillberg, C. (1991). Outcome in autism and autistic-like conditions. Journal of the American Academy of Child and Adolescent Psychiatry, 30(3), 375–382.CrossRefPubMedGoogle Scholar
  25. 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.CrossRefPubMedGoogle Scholar
  26. Graetz, J. E. (2010). Autism grows up: Opportunities for adults with autism. Disability & Society, 25(1), 33–47.CrossRefGoogle Scholar
  27. 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.CrossRefPubMedGoogle Scholar
  28. 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.CrossRefGoogle Scholar
  29. 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.CrossRefGoogle Scholar
  30. 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.CrossRefPubMedGoogle Scholar
  31. 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.CrossRefPubMedGoogle Scholar
  32. Howlin, P. (2000). Outcome in adult life for more able individuals with autism or Asperger syndrome. Autism, 4(1), 63–83.CrossRefGoogle Scholar
  33. 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.CrossRefGoogle Scholar
  34. 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.CrossRefPubMedGoogle Scholar
  35. 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.CrossRefGoogle Scholar
  36. 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.CrossRefPubMedGoogle Scholar
  37. 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.CrossRefPubMedGoogle Scholar
  38. 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.CrossRefGoogle Scholar
  39. 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.CrossRefPubMedGoogle Scholar
  40. 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.CrossRefPubMedGoogle Scholar
  41. Ortega, F. (2009). The cerebral subject and the challenge of neurodiversity. Biosocieties, 4(4), 425–445.CrossRefGoogle Scholar
  42. 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.CrossRefPubMedGoogle Scholar
  43. 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.CrossRefPubMedGoogle Scholar
  44. 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.CrossRefPubMedGoogle Scholar
  45. 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.CrossRefPubMedGoogle Scholar
  46. Stoddart, K. P., Burke, L., & King, R. (2012). Asperger syndrome in adulthood: A comprehensive guide for clinicians. New York: Norton Publishers.Google Scholar
  47. 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
  48. 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.CrossRefPubMedGoogle Scholar
  49. Tantam, D. (1991). Asperger syndrome in adulthood. In U. Frith (Ed.), Autism and Asperger syndrome (pp. 147–183). Cambridge: Cambridge University Press.CrossRefGoogle Scholar
  50. 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
  51. 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.CrossRefGoogle Scholar
  52. 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.CrossRefGoogle Scholar

Copyright information

© Springer Science+Business Media New York 2015

Authors and Affiliations

  1. 1.CERMES3 - INSERM U988 - CNRS UMR 8211 - EHESSParis Descartes UniversityParis Cedex 06France

Personalised recommendations