Cited by 784Autism Spectrum Disorder ResearchDisability Education and EmploymentFamily and Disability Support Research

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

Billstedt, Eva, Gillberg, Carina, Gillberg, Christopher·2005·Journal of Autism and Developmental Disorders

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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.

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“Long-term follow-up studies of children with NDD show that these conditions persist into adulthood (Barkley et al., 2006; Billstedt et al., 2005; Gillberg and Soderstrom, 2003; Howlin et al., 2014; Karam et al., 2015) in a majority of cases and carry a high risk of adverse outcomes (e.”
Self-citation
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“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. (2007) found that 22% of individuals developed epilepsy.”
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“Particularly because adult outcomes have been poor, with many struggling to succeed in higher education (Ciccantelli, 2011), find and maintain a job (Billstedt et al., 2005), and/or master independent living skills (Howlin et al., 2004), more adult-focused research is needed.”
Background
ECT for Catatonia in an Autistic Girl
Wachtel, L. E., Kahng, S., Dhossche, D. M., Cascella, N. G., & Reti, I. M. (2008) · American Journal of Psychiatry · doi:10.1176/appi.ajp.2007.07081246 · Cited by 77
“In a population-based study of patients with autism diagnosed in childhood (2), 13 (12%) autistic individuals between ages 17 and 40 years had clinically diagnosable catatonia with severe motor initiation problems.”
Interventions based on early intensive applied behaviour analysis for autistic children: a systematic review and cost-effectiveness analysis
Rodgers, M., Marshall, D. C., Simmonds, M. C., Couteur, A. S. L., Biswas, M., Wright, K. E., Rai, D., Palmer, S., Stewart, L. A., & Hodgson, R. M. (2020) · Health Technology Assessment · doi:10.3310/hta24350 · Cited by 74
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“Existing studies suggest that around 12–18 % of young people with ASD also present with catatonic symptoms (Wing and Shah 2000a; Billstedt et al. 2005; Ghaziuddin et al. 2012).”
Background
A factor analysis of challenging behaviors assessed with the Baby and Infant Screen for Children with aUtism Traits (BISCUIT-Part 3)
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“%) of all referrals Billstedt et al., 2005 [12] Systematic study 120 patients with ASDs.”
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Longitudinal Predictors of Outcomes for Adults With Autism Spectrum Disorder
Kirby, A. V., Baranek, G. T., & Fox, L. C. (2016) · OTJR Occupational Therapy Journal of Research · doi:10.1177/1539449216650182 · Cited by 76
“In addition, one study (Billstedt et al., 2005) looked particularly at presence of epilepsy at baseline and did not find it to significantly predict overall outcome.”
Background
Treatment of catatonia in autism spectrum disorders
Wachtel, L. E. (2018) · Acta Psychiatrica Scandinavica · doi:10.1111/acps.12980 · Cited by 73
A Meta-Analysis of Behavioral Interventions for Adolescents and Adults with Autism Spectrum Disorders
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“, self-injurious behaviors), and high rates of comorbid psychiatric diagnoses and other mental health problems (Baghdadli et al. 2012; Billstedt et al. 2005; Howlin 2003).”
Background
Occurrence of psychosis and bipolar disorder in adults with autism: A systematic review and meta-analysis
Varcin, K. J., Herniman, S. E., Lin, A. P., Chen, Y., Perry, Y., Pugh, C., Chisholm, K., Whitehouse, A., & Wood, S. J. (2022) · Neuroscience & Biobehavioral Reviews · doi:10.1016/j.neubiorev.2022.104543 · Cited by 74
ECT for self-injury in an autistic boy
Wachtel, L. E., Contrucci, S. A., Griffin, M., Thompson, A., Dhossche, D. M., & Reti, I. M. (2009) · European Child & Adolescent Psychiatry · doi:10.1007/s00787-009-0754-8 · Cited by 69
“at increased rates of 12–17%, with ECT included in the current treatment guidelines if lorazepam fails [8, 20, 46].”
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Wachtel, L. E., Hermida, A. P., & Dhossche, D. M. (2010) · Progress in Neuro-Psychopharmacology and Biological Psychiatry · doi:10.1016/j.pnpbp.2010.03.012 · Cited by 68
“Two population-based studies report catatonia to occur in 12–17% of individuals with autism spectrum disorders (Billstedt et al., 2005; Wing and Shah, 2000).”
Background
Development of an internet-based support and coaching model for adolescents and young adults with ADHD and autism spectrum disorders: a pilot study
Wentz, E., Nydén, A., & Krevers, B. (2012) · European Child & Adolescent Psychiatry · doi:10.1007/s00787-012-0297-2 · Cited by 69
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BackgroundInfluential
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“…have reported similar proportions of previously diagnosed individuals, including those with lower cognitive abilities, who no longer show autistic core features in adulthood (Baghdadli et al., 2018; Billstedt et al., 2005; Howlin, Goode, Hutton, & Rutter, 2004; Mawhood, Howlin, & Rutter, 2000).”
Background
ECHO Autism Transition: Enhancing healthcare for adolescents and young adults with autism spectrum disorder
Mazurek, M. O., Stobbe, G., Loftin, R., Malow, B. A., Agrawal, M. M., Tapia, M., Hess, A., Farmer, J., Cheak-Zamora, N., Kuhlthau, K., et al. (2020) · Autism · doi:10.1177/1362361319879616 · Cited by 63
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“%) reported additional diagnostic labels in addition to ASD resulting in a total of 77 different co-morbid diagnoses (excluding catatonia).”
Influential
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“Hindawi Publishing Corporation The Scientific World Journal Volume 2013, Article ID 158263, 7 pages http://dx.doi.org/10.1155/2013/158263”
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When is electroconvulsive therapy appropriate for children and adolescents?
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Prevalence of Non-Affective Psychoses in Individuals with Autism Spectrum Disorders: A Systematic Review
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Method
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Background
Objective and subjective quality of life in adults with autism spectrum disorders in southern Spain
Saldaña, D., Álvarez, R. M., Lobatón, S., Lopez, A. M., Moreno, M., & Rojano, M. Á. (2009) · Autism · doi:10.1177/1362361309103792 · Cited by 57
“Only one out of 23 participants in Gillberg and Steffenburg’s (1987) Swedish study was self-sufficient and, more recently, Billstedt et al. (2005) found that just three of their 120 participants lived independently.”
Background
Catatonia in the Medically ILL: Etiology, Diagnosis, and Treatment. The Academy of Consultation-Liaison Psychiatry Evidence-Based Medicine Subcommittee Monograph
Denysenko, L., Sica, N., Penders, T. M., Philbrick, K. L., Walker, A., Shaffer, S. H., Zimbrean, P. C., Freudenreich, O., Rex, N., Carroll, B. T., et al. (2018) · Annals of Clinical Psychiatry · doi:10.1177/104012371803000209 · Cited by 57

Authors: Billstedt, E., Gillberg, C., & Gillberg, C.
Affiliations: Drottning Silvias barn- och ungdomssjukhus (SE)
St George's, University of London (GB)
Corresponding author: Billstedt, Eva
ORCID: Billstedt, Eva
Gillberg, Christopher
Venue: Journal of Autism and Developmental Disorders
Publisher: Springer Science and Business Media LLC
Published: 2005-06
Volume: 35
Issue: 3
Pages: 351-360
ISSN: 0162-3257 (ISSN-L)
1573-3432
DOI: 10.1007/s10803-005-3302-5
OpenAlex: W2094623935
Cited by: 783
References: 45
Citations by year: 2026: 14 · 2025: 17 · 2024: 39 · 2023: 36 · 2022: 34 · 2021: 41 · 2020: 45 · 2019: 50 · 2018: 36 · 2017: 42 · 2016: 52 · 2015: 52 · 2014: 64 · 2013: 50 · 2012: 48
FWCI: 8.87
Type: journal article
Language: en
Open access: closed
Licence: www.springer.com/tdm (tdm)
Locations: Journal of Autism and Developmental Disorders (publishedVersion)
PubMed (publishedVersion)
Topics: Life Sciences › Neuroscience › Cognitive Neuroscience › Autism Spectrum Disorder Research
Social Sciences › Education › Disability Education and Employment
Social Sciences › Psychology › Clinical Psychology › Family and Disability Support Research
Keywords: autism spectrum disorder, adult outcomes, psychosocial outcomes, independent living, employment, higher education, vocational education, peer relationships, IQ, long-term follow-up
MeSH terms: Adolescent, Adult, Autistic Disorder, Child, Cognition Disorders, Epilepsy, Female, Follow-Up Studies, Humans, Male, Neuropsychological Tests, Population Surveillance, Prevalence

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

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