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Follow-up of adults diagnosed in childhood with autism/atypical autism

Participants: Eva Billstedt, Carina Gillberg & Christopher Gillberg.

Background: In the beginning of 2000, individuals, diagnosed in childhood with autism/atypical autism, were invited to take part in a study focusing on diagnostic stability, medical and psychiatric comorbidity and current living situation. The individuals invited had previously participated in one of three population-based studies on autism conducted in Gothenburg and Bohuslän in the 1980s. They made up the total amount of individuals in the entire population diagnosed with autism.

Method: Individuals, ranging in age from 17 to 40 years, diagnosed with autism/atypical autism, participated in a prospective follow-up study 13-22 years after the original study. The instruments used at follow-up were the DISCO (Diagnostic Interview for Social and Communication disorders), the Wechsler scale, the Vineland Adaptive behaviour Scale, psychiatric-medical examination and the GAF (Global Assessment of Functioning Scale).

Results: Six of the 120 individuals in the total population had died. 108 of the 114 remaining individuals took part in the follow-up. The results of the clinical follow-up study showed that the stability of the clinical diagnosis was high. The group who had previously been diagnosed with atypical autism (according to DSM-III, DSM-IIIR criteria), in the majority of cases, fulfilled the criteria for autism (according to DSM-IV criteria). The group needed a lot of support and only a small minority of the total population led independent lives as adults. Childhood IQ-level was positively correlated with better adult outcome, as was the level of language and communicative ability in childhood. Six of the twelve individuals who did not participate had died at the time of follow-up. The high mortality rate led to a follow-up a few years after the project was finished. Swedish records were then studied to establish the mortality rate for this group. The follow-up found a further increased mortality and a connection between mortality and associated medical disorders. However, it was not possible to determine whether autism "per se" carried an increased mortality risk.


Billstedt, E., Gillberg, I.C., & Gillberg, C. (2011). Aspects of quality of life in adults diagnosed with autism in childhood: a population-based study. Autism, 15, 7-20.

Gillberg, C., Billstedt, E., Sundh, V., & Gillberg, I. C. (2010). Mortality in autism: a prospective longitudinal community-based study. Journal of Autism and Developmental Disorders, 40, 352-357.

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, 72-85.

Billstedt, E., Gillberg, I.C., & 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, 1102-1110.

Billstedt, E., Gillberg, I. C., & Gillberg, C. (2005). Autism after adolescence: population-based 13- to 22-year follow-up study of 120 individuals with autism diagnosed in childhood. Journal of Autism and Developmental Disorders, 35, 351-360.


Page Manager: Anna Spyrou|Last update: 1/21/2013

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