Autism after Adolescence: Population-based 13- to 22-year Follow-up Study of 120 Individuals with Autism Diagnosed in Childhood

Department of Child and Adolescent Psychiatry, Queen Silvia's Hospital for Children and Adolescents, Göteborg, Sweden.
Journal of Autism and Developmental Disorders (Impact Factor: 3.34). 07/2005; 35(3):351-60. DOI: 10.1007/s10803-005-3302-5
Source: PubMed


Prospective population-based follow-up study of 120 individuals with autism followed from childhood to adulthood.
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.
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.
Children with autism as diagnosed in the 1960s, 1970s, and 1980s may have an even worse psychosocial outcome than previously believed.

34 Reads
  • Source
    • "Follow-up studies have been conducted in individuals with ASD investigating whether they developed epilepsy (Bolton et al., 2011; Billstedt, Gillberg, & Gillberg, 2005; Hara, 2007). Billstedt et al. (2005) found that new cases of epilepsy appeared in the post-adolescent period, but no individual developed epilepsy after the age of 20 years. Bolton et al. (2011) found that 22% of individuals developed epilepsy. "
    [Show abstract] [Hide abstract]
    ABSTRACT: Research has recently focused on studying comorbidity in the autism spectrum but little research has been conducted in follow-up studies or conducting longitudinal research into these conditions. Mannion, Leader, and Healy (2013) examined the frequency of comorbid disorders in children and adolescents with autism spectrum disorder and the predictors of sleep problems. The current study is a follow-up study conducted two years later with 56 participants. Age, gender, level of intellectual disability, presence of epilepsy, attention deficit/hyperactivity disorder (AD/HD) and an anxiety disorder were assessed, along with administering the Autism Spectrum Disorder- Comorbid for Children (ASD-CC) , the Children’s Sleep Habits Questionnaire (CSHQ) and Gastrointestinal Symptom Inventory. The aim of the study was to determine if comorbid symptoms changed over time. An additional aim was to explore if there is a relationship between family medical history and history of autoimmune diseases, and child comorbid conditions. Sleep problems persisted in 91.5% of participants. Gastrointestinal symptoms persisted in 84.4% of participants. There was a significant difference between over-eating at baseline and at two-year follow-up, where over-eating became more severe over time. It was found that 92.9% of participants presented with a family history of autoimmune disease. The most common autoimmune diseases were osteoarthritis, psoriasis and hypothyroidism. The associations between familial autoimmune diseases and child comorbid conditions are discussed in the study.
    Full-text · Article · Feb 2016 · Research in Autism Spectrum Disorders
    • "At the international level, different long-term outcome studies have shown that about two-thirds of individuals with autism will remain dependent on others throughout life (Ballaban-Gil et al. 1996; Billstedt et al. 2005, 2011; Bruder et al. 2012; Eaves and Ho 2008; Gray et al. 2014; Howlin et al. 2004; Hutton et al. 2008; Gillberg 1991; Gillberg and Steffenburg 1987; Stein et al. 2001; Stoddart et al. 2013). In the 1980s, Lorna Wing (1983) suggested that there are three major groups of behaviors typical of adults diagnosed as autistic during childhood. "
    [Show abstract] [Hide abstract]
    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.
    No preview · Article · Nov 2015 · Journal of Autism and Developmental Disorders
  • Source
    • "Further, it remains to be clarified which individual factors may influence future ASD severity. Previous studies showed that levels of intelligence and language development were predictive of ASD symptom severity later in life (Billstedt et al. 2005, 2007; Gillberg and Steffenburg 1987; McGovern and Sigman 2005). However, to our knowledge, there is only one study that investigated whether the presence of comorbid psychiatric problems influenced later ASD symptom severity (Simonoff et al. 2013). "
    [Show abstract] [Hide abstract]
    ABSTRACT: The current 7-year follow-up study investigated: (1) the stability of ASD severity, and (2) associations of ASD severity in adolescence with (a) childhood and concurrent psychiatric comorbidity, and (b) concurrent societal functioning. The Autism Diagnostic Observation Schedule (ADOS) and the Diagnostic Interview Schedule for Children were administered in childhood (ages 6-12) and in adolescence (ages 12-20) to 72 individuals with a pervasive developmental disorder-not otherwise specified (PDD-NOS). ADOS calibrated severity scores showed a large stability (r = .51). Psychiatric comorbidity in childhood and adolescence were not associated with ASD severity in adolescence. Mental health care use (87 %) and special education needs were high (71 %). Reevaluation of ASD severity and psychiatric comorbidity later in life seem useful when PDD-NOS is diagnosed in childhood.
    Full-text · Article · Sep 2015 · Journal of Autism and Developmental Disorders
Show more