Skip to main content
Log in

Fifteen-Year Prospective Follow-Up Study of Adult Outcomes of Autism Spectrum Disorders Among Children Attending Centers in Five Regional Departments in France: The EpiTED Cohort

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

A Correction to this article was published on 14 March 2019

This article has been updated

Abstract

There is limited data on long-term outcome of ASD with co-occurring intellectual disabilities (ID) and challenging behaviours in France. The EpiTED period cohort is a 15 years longitudinal study of the developmental trajectories of 281 children initially recruited at mean age of 5 years. Two contrasted developmental trajectories were identified. Low cognitive level, absence of language, and higher ASD scores at baseline were predictive of low growth at follow-up. As adults the participants were predisposed to persistent co-occurring challenging behaviours as well as underlying ID impacting their ability to function independently. The results underscore the need for development of services and supports for adults with ASD in France who may also have already lacked access to adequate interventions and support services.

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

Access this article

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

Instant access to the full article PDF.

Fig. 1
Fig. 2

Similar content being viewed by others

Change history

  • 14 March 2019

    The original version of this article unfortunately contained the following omissions.

References

  • Aman, M. G., Singh, N. N., Stewart, A. W., & Field, C. J. (1985). The aberrant behavior checklist: A behavior rating scale for the assessment of treatment effects. American Journal of Mental Deficiency, 89(5), 485–491.

    PubMed  Google Scholar 

  • American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (DSM-5®): Washington, DC: American Psychiatric Publishing.

    Book  Google Scholar 

  • Baeza-Velasco, C., Michelon, C., Rattaz, C., & Baghdadli, A. (2014). Are aberrant behavioral patterns associated with the adaptive behavior trajectories of teenagers with Autism spectrum disorders? Research in Autism Spectrum Disorders, 8(3), 304–311.

    Article  Google Scholar 

  • Baghdadli, A., Assouline, B., Sonie, S., Pernon, E., Darrou, C., Michelon, C., Picot, M. C., Aussilloux, C., Pry, R. (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, 1314–1325. https://doi.org/10.1007/s10803-011-1357-z.

    Article  PubMed  Google Scholar 

  • Baghdadli, A., Michelon, C., Pernon, E., Picot, M.-C., Miot, S., Sonié, S., Rattaz, C., Mottron, L. (2018). Adaptive trajectories and early risk factors in the autism spectrum: A 15-year prospective study. Autism Research. https://doi.org/10.1002/aur.2022.

    Article  PubMed  Google Scholar 

  • Baghdadli, A., Pascal, C., Grisi, S., & Aussilloux, C. (2003). Risk factors for self-injurious behaviours among 222 young children with autistic disorders. Journal of Intellectual Disability Research, 47(8), 622–627.

    Article  PubMed  Google Scholar 

  • Baghdadli, A., Picot, M. C., Pry, R., Michelon, C., Burzstejn, C., Lazartigues, A., & Aussilloux, C. (2008). What factors are related to a negative outcome of self-injurious behaviour during childhood in pervasive developmental disorders? Journal of Applied Research in Intellectual Disabilities, 21(2), 142–149.

    Article  Google Scholar 

  • Baghdadli, A., Pry, R., Michelon, C., & Rattaz, C. (2014). Impact of autism in adolescents on parental quality of life. Quality of life research, 23(6), 1859–1868.

    Article  PubMed  Google Scholar 

  • Bal, V. H., Kim, S.-H., Cheong, D., & Lord, C. (2015). Daily living skills in individuals with autism spectrum disorder from 2 to 21 years of age. Autism, 19(7), 774–784.

    Article  PubMed  Google Scholar 

  • Billstedt, E., Carina Gillberg, I., & Gillberg, C. (2007). Autism in adults: Symptom patterns and early childhood predictors. Use of the DISCO in a community sample followed from childhood. Journal of Child Psychology and Psychiatry, 48(11), 1102–1110.

    Article  PubMed  Google Scholar 

  • Brunet, O., Lézine, I., & Josse, D. (1997). Brunet-Lézine révisé: échelle de développement psychomoteur de la première enfance: BLR: Editions et applications psychologiques.

  • Centers for Disease Control and Prevention (CDC). (2014). Prevalence of autism spectrum disorder among children aged 8 years-autism and developmental disabilities monitoring network, 11 sites, United States, 2010. Morbidity and Mortality Weekly Report. Surveillance Summaries. 63(2), 1–22.

    Google Scholar 

  • Chaidez, V., Hansen, R. L., & Hertz-Picciotto, I. (2014). Gastrointestinal problems in children with autism, developmental delays or typical development. Journal of Autism and Developmental Disorders, 44(5), 1117–1127.

    Article  PubMed  PubMed Central  Google Scholar 

  • Chowdhury, M., Benson, B. A., & Hillier, A. (2010). Changes in restricted repetitive behaviors with age: A study of high-functioning adults with autism spectrum disorders. Research in Autism Spectrum Disorders, 4(2), 210–216.

    Article  Google Scholar 

  • Courtemanche, A. B., Black, W. R., & Reese, R. M. (2016). The relationship between pain, self-injury, and other problem behaviors in young children with autism and other developmental disabilities. American Journal on Intellectual and Developmental Disabilities, 121(3), 194–203.

    Article  PubMed  Google Scholar 

  • Craig, F., Margari, F., Legrottaglie, A. R., Palumbi, R., De Giambattista, C., & Margari, L. (2016). A review of executive function deficits in autism spectrum disorder and attention-deficit/hyperactivity disorder. Neuropsychiatric Disease and Treatment, 12, 1191.

    PubMed  PubMed Central  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.

    Article  Google Scholar 

  • Dunn, L. M., Dunn, L. M., & Theriault-Whalen, C. (1993). Échelle de vocabulaire en images Peabody: EVIP: Psycan.

  • Eapen, V., & Guan, J. (2016). Parental quality of life in autism spectrum disorder: Current status and future directions. Acta Psychopathologica, 2(1), 1–14.

    Article  Google Scholar 

  • Gillespie-Lynch, K., Sepeta, L., Wang, Y., Marshall, S., Gomez, L., Sigman, M., & Hutman, T. (2012). Early childhood predictors of the social competence of adults with autism. Journal of Autism and Developmental Disorders, 42(2), 161–174.

    Article  PubMed  Google Scholar 

  • Happé, F., & Charlton, R. A. (2012). Aging in autism spectrum disorders: A mini-review. Gerontology, 58(1), 70–78.

    Article  PubMed  Google Scholar 

  • Howlin, P., Savage, S., Moss, P., Tempier, A., & Rutter, M. (2014). Cognitive and language skills in adults with autism: A 40-year follow-up. Journal of Child Psychology and Psychiatry, 55(1), 49–58.

    Article  PubMed  Google Scholar 

  • Jones, B. L., & Nagin, D. S. (2007). Advances in group-based trajectory modeling and an SAS procedure for estimating them. Sociological Methods & Research, 35(4), 542–571.

    Article  Google Scholar 

  • Jones, B. L., Nagin, D. S., & Roeder, K. (2001). A SAS procedure based on mixture models for estimating developmental trajectories. Sociological Methods & Research, 29(3), 374–393.

    Article  Google Scholar 

  • Kaufmann, A. S. (1983). K-ABC: Kaufmann assessment battery for children: Administration and scoring manual. Circle Pines, MN: American Guidance Service.

    Google Scholar 

  • Kinra, S., Krishna, K. R., Kuper, H., Sarma, K. R., Prabhakaran, P., Gupta, V., … Kumar, A. (2014). Cohort profile: Andhra Pradesh children and parents study (APCAPS). International Journal of Epidemiology, 43(5), 1417–1424.

    Article  PubMed  Google Scholar 

  • Lord, C., Rutter, M., DiLavore, P., & Risi, S. (2002). Autism diagnostic observation schedule: ADOS: Manual. CA: Western Psychological Services Los Angeles.

    Google Scholar 

  • Magiati, I., Tay, X. W., & Howlin, P. (2014). Cognitive, language, social and behavioural outcomes in adults with autism spectrum disorders: a systematic review of longitudinal follow-up studies in adulthood. Clinical Psychology Review, 34(1), 73–86.

    Article  PubMed  Google Scholar 

  • McGovern, C. W., & Sigman, M. (2005). Continuity and change from early childhood to adolescence in autism. Journal of Child Psychology and Psychiatry, 46(4), 401–408.

    Article  PubMed  Google Scholar 

  • Murphy, G. H., Beadle-Brown, J., Wing, L., Gould, J., Shah, A., & Holmes, N. (2005). Chronicity of challenging behaviours in people with severe intellectual disabilities and/or autism: A total population sample. Journal of Autism and Developmental Disorders, 35(4), 405–418.

    Article  PubMed  Google Scholar 

  • Nagin, D. S., & Nagin, D. (2005). Group-based modeling of development. Cambridge: Harvard University Press.

    Book  Google Scholar 

  • Nagin, D. S., & Odgers, C. L. (2010). Group-based trajectory modeling in clinical research. Annual Review of Clinical Psychology, 6, 109–138.

    Article  Google Scholar 

  • Nagin, D. S., & Tremblay, R. E. (2005). What has been learned from group-based trajectory modeling? Examples from physical aggression and other problem behaviors. The Annals of the American Academy of Political and Social Science, 602(1), 82–117.

    Article  Google Scholar 

  • O’neill, M., & Jones, R. S. (1997). Sensory-perceptual abnormalities in autism: A case for more research? Journal of Autism and Developmental Disorders, 27(3), 283–293.

    Article  PubMed  Google Scholar 

  • Rattaz, C., Michelon, C., & Baghdadli, A. (2015). Symptom severity as a risk factor for self-injurious behaviours in adolescents with autism spectrum disorders. Journal of Intellectual Disability Research, 59(8), 730–741. https://doi.org/10.1111/jir.12177.

    Article  PubMed  Google Scholar 

  • Rattaz, C., Michelon, C., Munir, K., & Baghdadli, A. (2018). Challenging behaviours at early adulthood in autism spectrum disorders: Topography, risk factors and evolution. Journal of Intellectual Disability Research.

  • Renty, J., & Roeyers, H. (2006). Quality of life in high-functioning adults with autism spectrum disorder: The predictive value of disability and support characteristics. Autism, 10(5), 511–524.

    Article  PubMed  Google Scholar 

  • Rutter, M., Le Couteur, A., & Lord, C. (2003). Autism diagnostic inventory-revised. Los Angeles: Western Psychological Services.

    Google Scholar 

  • Schieve, L. A., Blumberg, S. J., Rice, C., Visser, S. N., & Boyle, C. (2007). The relationship between autism and parenting stress. Pediatrics, 119 (Suppl 1), 114–121. https://doi.org/10.1542/peds.2006-2089Q.

    Article  Google Scholar 

  • Schopler, E., Reichler, R. J., Bashford, A., Lansing, M. D., & Marcus, L. M. (1990). Individualized assessment of autistic and developmentally disabled children: Psychoeducational Profile Revised (PEP-R). Austin, TX: Pro-Ed.

    Google Scholar 

  • Schopler, E., Reichler, R. J., & Renner, B. R. (2002). The childhood autism rating scale (CARS). Los Angeles: Western Psychological Services.

    Google Scholar 

  • Shattuck, P. T., Seltzer, M. M., Greenberg, J. S., Orsmond, G. I., Bolt, D., Kring, S., … Lord, C. (2007). Change in autism symptoms and maladaptive behaviors in adolescents and adults with an autism spectrum disorder. Journal of Autism and Developmental Disorders, 37(9), 1735–1747.

    Article  PubMed  Google Scholar 

  • Smith, L. E., Maenner, M. J., & Seltzer, M. M. (2012). Developmental trajectories in adolescents and adults with autism: The case of daily living skills. Journal of the American Academy of Child & Adolescent Psychiatry, 51(6), 622–631.

    Article  Google Scholar 

  • Sparrow, S. S., Balla, D. A., & Cicchetti, D. V. (1984). The Vineland Adaptive Behavior Scales. Circle Pines, MN: America Guidance Service.

  • Steinhausen, H. C., Jensen, M. C., & Lauritsen, M. B. (2016). A systematic review and meta-analysis of the long-term overall outcome of autism spectrum disorders in adolescence and adulthood. Acta Psychiatrica Scandinavica. 133(6):445–452

    Article  Google Scholar 

  • Stern, W. (1912). The psychological methods of intelligence testing. G. Whipple, Trans.). Baltimore: Warwick and York.

    Google Scholar 

  • Szatmari, P., Bryson, S., Duku, E., Vaccarella, L., Zwaigenbaum, L., Bennett, T., & Boyle, M. H. (2009). Similar developmental trajectories in autism and Asperger syndrome: From early childhood to adolescence. Journal of Child Psychology and Psychiatry, 50(12), 1459–1467.

    Article  PubMed  Google Scholar 

  • Szatmari, P., Georgiades, S., Duku, E., Bennett, T. A., Bryson, S., Fombonne, E., … Vaillancourt, T. (2015). Developmental trajectories of symptom severity and adaptive functioning in an inception cohort of preschool children with autism spectrum disorder. JAMA Psychiatry, 72(3), 276–283.

    Article  PubMed  Google Scholar 

  • Vanderschelden, M. (2006). Les ruptures d’unions: plus fréquentes, mais pas plus précoces. The National Institute of Statistics and Economic Studies (INSEE). In.

  • Wechsler, D. (1949). Wechsler intelligence scale for children.

  • Wechsler, D. (1967). Wechsler preschool and primary scale of intelligence-WPPSI. New York: Psychological Corporation.

    Google Scholar 

  • Wechsler, D. (1974). Manual for the Wechsler intelligence scale for children, revised. New York: Psychological Corporation.

    Google Scholar 

  • Wechsler, D. (2008). Wechsler adult intelligence scale–Fourth Edition (WAIS–IV). San Antonio, TX: NCS Pearson, 22, 498.

    Google Scholar 

  • World Health Organization. (1993). The ICD-10 classification of mental and behavioural disorders: diagnostic criteria for research.

Download references

Acknowledgments

We wish to sincerely thank the participants and their families for their valuable and long-lasting collaboration and their confidence in our study. We also extend our thanks to the research teams for their support during the past 15 years. A special thought to Florine Dellapiazza and to Colette Boy for their help with the literature review.

Funding

This work was supported by grants from the Orange Foundation, and the French national health institute (PHRC 1997 & 2007 and ANR Blanc).

Author information

Authors and Affiliations

Authors

Contributions

AB was involved in the study design and methods, data collection, interpretation of results, writing, and revision of the initial draft. EP was involved in the study design and methods and data collection. CM and CR were involved in data analysis, interpretation of results, writing, and revision of the draft. KM was involved in the interpretation, writing, and revision of the draft. All the authors have critically revised this article and approved the final version to be published.

Corresponding author

Correspondence to Amaria Baghdadli.

Ethics declarations

Conflict of interest

The authors declare that they have no conflict of interest.

Ethical Approval

This study was approved by the Medical ethical committee and the National Commission for Computing and Liberties (CNIL. number 1585321 v0).

Informed Consent

Informed consent was obtained from all individual participants included in the study.

Additional information

Publisher’s Note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Baghdadli, A., Rattaz, C., Michelon, C. et al. Fifteen-Year Prospective Follow-Up Study of Adult Outcomes of Autism Spectrum Disorders Among Children Attending Centers in Five Regional Departments in France: The EpiTED Cohort. J Autism Dev Disord 49, 2243–2256 (2019). https://doi.org/10.1007/s10803-019-03901-9

Download citation

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s10803-019-03901-9

Keywords

Navigation