Autism after Adolescence: Population-based 13- to 22-year Follow-up Study of 120 Individuals with Autism Diagnosed in Childhood Article DOI:
Cite this article as: Billstedt, E., Gillberg, C. & Gillberg, C. J Autism Dev Disord (2005) 35: 351. doi:10.1007/s10803-005-3302-5 Abstract Background: Prospective population-based follow-up study of 120 individuals with autism followed from childhood to adulthood. Methods: Individuals with autism, diagnosed in childhood, were followed prospectively for a period of 13–22 years and re-evaluated at ages 17–40 years. The instruments used at follow-up were the DISCO, WAIS-R, WISC-III, Vineland Adaptive Behavior Scales, psychiatric-medical examination and GAF-scale. A set of criteria was used for the classification of outcomes, taking into consideration employment, higher education/vocational training, independent living and peer relations. Results: Six of the 120 (5%) had died at the time of follow-up, and six declined participation. Overall outcome was poor in 78% of cases. Only four individuals were independent albeit leading fairly isolated lives. Childhood IQ-level was positively correlated with better adult outcome, as was the existence of some communicative phrase speech at age six years. Conclusions: Children with autism as diagnosed in the 1960s, 1970s, and 1980s may have an even worse psychosocial outcome than previously believed. Keywords Autism epidemiology outcome epilepsy adolescence
An erratum to this article is available at
. http://dx.doi.org/10.1007/s10803-006-0082-5 References American Psychiatric Association 1987Diagnostic and statistical manual of mental disorders, 3rd ed. Revised (DSM-III-R) American Psychiatric Association Washington, DC Google Scholar American Psychiatric Association 1980Diagnostic and statistical manual of mental disorders, 3rd ed. Revised (DSM-III) American Psychiatric Association Washington, DC Google Scholar American Psychiatric Association 1994Diagnostic and statistical manual of mental disorders, 4th ed. (DSM-IV) American Psychiatric Association Washington, DC Google Scholar Beadle-Brown, J., Murphy, G., Wing, L., Gould, J., Shah, A., Holmes, N. 2002 Changes in social impairment for people with intellectual disabilities: A follow-up of the Camberwell cohort Journal of Autism and Developmental Disorders 32 195 206 Google Scholar Gillberg, C. 1984 Infantile autism and other childhood psychoses in a Swedish urban region. Epidemiological aspects Journal of Child Psychology and Psychiatry 25 35 43 Google Scholar Gillberg, C. 1990 Outcome in autism and autistic-like conditions Journal of the American Academy of Child and Adolescent Psychiatry 30 375 382 Google Scholar Gillberg, C., Gillberg, I. C. 1989 Asperger syndrome – some epidemiological considerations: A research note Journal of Child Psychology and Psychiatry 30 631 638 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 17 273 288 Google Scholar Gillberg, C., Steffenburg, S., Schaumann, H. 1991 Is autism more common now than ten years ago? British Journal of Psychiatry 158 403 409 Google Scholar Gillberg, C., Wing, L. 1999 Autism: Not an extremely rare disorder Acta Psychiatrica Scandinavica 6 399 406 Google Scholar Howlin, P. 1998 Practitioner review: Psychological and educational treatments for autism Journal of Child Psychology and Psychiatry 39 307 322 Google Scholar Howlin, P., Mawhood, L., Rutter, M. 2000 Autism and developmental receptive language disorder – a follow-up comparison in early adult life. II: Social, behavioural, and psychiatric outcomes Journal of Child Psychology and Psychiatry 41 561 578 Google Scholar Isager, T., Mouridsen, S. E., Rich, B. 1999 Mortality and causes of death in pervasive developmental disorders Autism 3 7 16 Google Scholar Kanner, L. 1971 Follow-up study of eleven children originally reported in 1943 Journal of Autism and Childhood Schizophrenia 1 119 145 Google Scholar Kobayashi, R, Murata, T. 1998 Setback phenomenon in autism and long-term prognosis Acta Psychiatrica Scandinavica 4 296 303 Google Scholar Krug, D. A., Arick, J., Almond, P. 1980 Behaviour checklist for identifying severely handicapped individuals with high levels of autistic behaviours Journal of Child Psychology and Psychiatry 21 221 229 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 6 181 190 Google Scholar LeCouteur, A., Rutter, M., Lord, C., Rios, P., Robertson, S., Holdgrafer, M., et al. 1989 Autism Diagnostic Interview: A standardized investigator-based instrument Journal of Autism and Developmental Disorders 19 363 387 Google Scholar Lotter, V. 1974 Factors related to outcome in autistic children Journal of Autism and Child Schizophrenia 4 263 277 Google Scholar Lotter, V. 1978 Follow-up studies Rutter, M. Schopler, E. eds. Autism. A reappraisal of concepts and treatment Plenum Press New York 475 495 Google Scholar Lovaas, I. 1987 Behavioural treatment and abnormal educational and intellectual functioning in young autistic children Journal of Consulting and Clinical Psychology 5 3 9 Google Scholar Mawhood, L., Howlin, P., Rutter, M. 2000 Autism and developmental receptive language disorder – a comparative follow-up in early adult life. I: Cognitive and language outcomes Journal of Child Psychology and Psychiatry 41 547 559 Google Scholar Nordin, V., Gillberg, C. 1998 The long-term course of autistic disorders: Update on follow-up studies Acta Psychiatrica Scandinavica 97 99 108 Google Scholar Olsson, I., Gillberg, C., Steffenburg, S. 1988 Epilepsy in autism and autistic-like conditions: A population-based study Archives of Neurology 45 666 668 Google Scholar Rumsey, J. M., Hamburger, S. D. 1988 Neuropsychological findings in high-functioning men with infantile autism, residual state Journal of Clinical and Experimental Neuropsychology 10 201 221 Google Scholar Rutter, M. 1978 Diagnosis and definition Rutter, M. Schopler, E. eds. Autism. A reappraisal of concepts and treatment Plenum Press New York 1 25 Google Scholar Schopler, E., Mesibov, G. 1983Autism in adolescents and adults Plenum Press New York Google Scholar Schopler, E., Reichler, R. J., DeVellis, R. F., Daly, K. 1980 Toward objective classification of childhood autism: Childhood Autism Rating Scale (CARS) Journal of Autism and Developmental Disorders 10 91 103 Google Scholar Sparrow, S., Balla, D., Cicchetti, D. 1984Vineland Adaptive Behavior Scales American Guidance Service Circle Pines, MN Google Scholar Steffenburg, S., Gillberg, C. 1986 Autism and autistic-like condition in Swedish rural and urban areas: A population study British Journal of Psychiatry 149 81 87 Google Scholar Steffenburg, S., Gillberg, C., Steffenburg, U. 1996 Psychiatric disorders in children and adolescents with mental retardation and active epilepsy Archives of Neurology 53 904 912 Google Scholar
Steffenburg, S. (1990).
Neurobiological correlates of autism. M.D. Thesis, University of Göteborg Szatmari, P., Bartolucci, R., Bremner, R., Bond, S., Rich, S. 1989 A follow-up study of high functioning autistic children Journal of the Autism and Developmental Disorders 19 213 225 Google Scholar Volkmar, F. R., Nelson, D. S. 1990 Seizure disorders in autism Journal of American Academy of Child and Adolescent Psychiatry 29 127 129 Google Scholar Wechsler, D. 1981Wechsler Adult Intelligence Scale – Revised Psychological Corporation San Antonio, TX Google Scholar Wechsler, D. 1992aWechsler Intelligence Scale for Children3 Psychological Corporation London, UK Google Scholar Wechsler, D. 1992bWechsler Adult Intelligence Scale – Revised Psykologiförlaget Stockholm Google Scholar Wechsler, D. 1999Wechsler Intelligence Scale for Children3 Psykologiförlaget Stockholm Google Scholar Wing, L. 1990Handicap, behaviours and skills schedule MRC Social Psychiatry Unit London Google Scholar Wing, L., Leekam, S. R., Libby, S. J., Gould, J., Larcombe, M. 2002 The Diagnostic Interview for Social and Communication disorders: Background, inter-rater reliability and clinical use Journal of Child Psychology and Psychiatry 43 307 325 Google Scholar Wing, L., Shah, A. 2000 Catatonia in autistic spectrum disorders British Journal of Psychiatry 176 357 362 Google Scholar Wing, L. 1996 Autistic spectrum disorder British Medical Journal 312 327 328 Google Scholar World Health Organisation 1993The ICD-10 classification of mental and behavioural disorders (ICD-10). Clinical descriptions and diagnostic guidelines Author Geneva Google Scholar Copyright information
© Springer Science+Business Media, Inc. 2005