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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Background
Electroconvulsive Therapy in Children and Adolescents
Døssing, E., & Pagsberg, A. K. (2021) · Journal of Ect · doi:10.1097/yct.0000000000000761 · Cited by 40
The use of genetic epidemiology to guide classification in child and adult psychopathology
Szatmari, P., White, J., & Merikangas, K. R. (2007) · International Review of Psychiatry · doi:10.1080/09540260701563619 · Cited by 38
“Most have a poor outcome but many have a much better outcome especially if IQ is in the ‘typical’ range and there is useful language before the age of six (Billstedt et al., 2005; Howlin et al., 2004).”
Background
Information transfer within and between autistic and non-autistic people
Crompton, C. J., Foster, S. J., Wilks, C. E. H., Dodd, M., Efthimiou, T. N., Ropar, D., Sasson, N. J., Lages, M., & Fletcher‐Watson, S. (2025) · Nature Human Behaviour · doi:10.1038/s41562-025-02163-z · Cited by 45
“These difficulties are associated with fewer friendships 3 , less social support 4 , loneliness 5 , challenges securing and maintaining employment 6–8 , poorer mental health 9,10 and reduced quality of life 11 .”
The activities and participation of adolescents with autism spectrum disorders in Singapore: findings from an ICF‐based instrument
Poon, K. K. (2011) · Journal of Intellectual Disability Research · doi:10.1111/j.1365-2788.2011.01397.x · Cited by 46
Functional Outcomes of Adolescents with a History of Specific Language Impairment (SLI) with and without Autistic Symptomatology
Durkin, K., Conti‐Ramsden, G., & Simkin, Z. (2011) · Journal of Autism and Developmental Disorders · doi:10.1007/s10803-011-1224-y · Cited by 41
New recommendations on autism spectrum disorder
Szatmári, P. (2011) · BMJ · doi:10.1136/bmj.d2456 · Cited by 38
Autismus bei erwachsenen Menschen mit geistiger Behinderung
Sappok, T., Bergmann, T. J., Kaiser, H., & Diefenbacher, A. (2010) · Der Nervenarzt · doi:10.1007/s00115-010-3098-1 · Cited by 39
‘Why are we an ignored group?’ Mainstream educational experiences and current life satisfaction of adults on the autism spectrum from an online survey
Parsons, S. (2014) · International Journal of Inclusive Education · doi:10.1080/13603116.2014.935814 · Cited by 47
The Characteristics of Intelligence Profile and Eye Gaze in Facial Emotion Recognition in Mild and Moderate Preschoolers With Autism Spectrum Disorder
He, Y., Su, Q., Wang, L., He, W., Tan, C., Zhang, H., Ng, M. L., Yan, N., & Chen, Y. (2019) · Frontiers in Psychiatry · doi:10.3389/fpsyt.2019.00402 · Cited by 40
Catatonia in autism and other neurodevelopmental disabilities: a state-of-the-art review
Moore, S., Amatya, D. N., Chu, M. M., & Besterman, A. D. (2022) · npj Mental Health Research · doi:10.1038/s44184-022-00012-9 · Cited by 41
“…between what constitutes psychosis, autism, and catatonia, but there are certainly cases where it remains challenging to understand if new psychomotor or negativistic symptoms represent an exacerbation of preexisting neuropsychiatric symptoms or comorbid catatonia in patients with NDDs 6 .”
Influential
Impact of Choice on Social Outcomes of Adults with ASD
Mehling, M. H., & Tassé, M. J. (2014) · Journal of Autism and Developmental Disorders · doi:10.1007/s10803-014-2312-6 · Cited by 36
Evaluating Change in Social Skills in High-Functioning Adults With Autism Spectrum Disorder Using a Laboratory-Based Observational Measure
White, S. W., Scarpa, A., Conner, C. M., Maddox, B. B., & Bonete, S. (2014) · Focus on Autism and Other Developmental Disabilities · doi:10.1177/1088357614539836 · Cited by 39
The Stories of Older Parents of Adult Sons and Daughters with Autism: A Balancing Act
Hines, M., Balandin, S., & Togher, L. (2013) · Journal of Applied Research in Intellectual Disabilities · doi:10.1111/jar.12063 · Cited by 40
How and Why is Autism Spectrum Disorder Misdiagnosed in Adult Patients? - From Diagnostic Problem to Management for Adjustment -
Takara, K., & Kondo, T. (2015) · Mental Health in Family Medicine · doi:10.25149/1756-8358.1102011 · Cited by 38
“Although previous studies demonstrated a wide range (0% to 28%) of lifetime prevalence of schizophrenia in ASD subjects [8, 35, 36, 38, 41, 43, 48-50], most of them reported a prevalence of under 4% [8,35,36,41,43,48-50].”
Result
Transcranial direct current stimulation in children with autism spectrum disorder: a systematic scoping review
Osório, A., & Brunoni, A. R. (2018) · Developmental Medicine & Child Neurology · doi:10.1111/dmcn.14104 · Cited by 37
“Transcranial direct current stimulation is being evaluated as a promising tool for the treatment of paediatric psychiatric disorders.6,22 The available evidence, although still insufficient to indicate any effect of tDCS for symptom improvement in children and adolescents with ASD, encourages large-scale, randomized,…”
BackgroundInfluential
Diagnosing high incidence autism spectrum disorders in adults
Matson, J. L., & Neal, D. (2009) · Research in Autism · doi:10.1016/j.rasd.2009.01.001 · Cited by 35
Brief report: Electroconvulsive therapy for malignant catatonia in an autistic adolescent
Wachtel, L. E., Griffin, M. M., Dhossche, D. M., & Reti, I. M. (2010) · Autism · doi:10.1177/1362361309350135 · Cited by 35
“Two systematic studies of catatonia in autism demonstrate that catatonia occurs in 12%-17% of adolescents and young adults with autism (Billstedt et al., 2005;Wing and Shah, 2000).”
Characteristics of Children Who Lost the Diagnosis of Autism: A Sample from Istanbul, Turkey
Mukaddes, N. M., Tutkunkardaş, M. D., Sarı, O. T., Aydın, A., & Kozanoglu, P. (2014) · Autism Research and Treatment · doi:10.1155/2014/472120 · Cited by 34
“Recent long-term studies on outcomes demonstrate unfavorable results for low-functioning individuals with autistic disorder (AD) [3, 4] and a favorable outcome in the majority of individuals with high-functioning autism (HFA) and Asperger’s disorder (AS) [4, 5].”
Background
The study of pediatric catatonia supports a home of its own for catatonia in DSM-5
Dhossche, D. M., Cohen, D., Ghaziuddin, N., Wilson, C., & Wachtel, L. E. (2010) · Medical Hypotheses · doi:10.1016/j.mehy.2010.07.029 · Cited by 34
“Catatonia also occurs in children and adolescents with autistic [15,20,22,24,29–44], developmental [45–48], and tic disorders [49,50], and in its idiopathic form [23,51–56].”
BackgroundInfluential
The Autism Spectrum
Gillberg, C. (2007) · Springer eBooks · doi:10.1007/0-387-32931-5_2 · Cited by 36
Self-citation
Pubertal Development Measurement in Children With and Without Autism Spectrum Disorder: A Comparison Between Physical Exam, Parent- and Self-Report
Corbett, B. A., Muscatello, R. A., Tanguturi, Y. C., McGinn, E., & Ioannou, S. (2019) · Journal of Autism and Developmental Disorders · doi:10.1007/s10803-019-04192-w · Cited by 35
Development, Feasibility, and Acceptability of a Nationally Relevant Parent Training to Improve Service Access During the Transition to Adulthood for Youth with ASD
Taylor, J. L., Pezzimenti, F., Burke, M. M., DaWalt, L. S., Lee, C. E., & Rabideau, C. (2021) · Journal of Autism and Developmental Disorders · doi:10.1007/s10803-021-05128-z · Cited by 33
Imitation (rather than core language) predicts pragmatic development in young children with ASD: a preliminary longitudinal study using CDI parental reports
Miniscalco, C., Rudling, M., Råstam, M., Gillberg, C., & Johnels, J. Å. (2014) · International Journal of Language & Communication Disorders · doi:10.1111/1460-6984.12085 · Cited by 33
Self-citation
Epilepsy in Patients With Pervasive Developmental Disorder Not Otherwise Specified
Parmeggiani, A., Posar, A., Antolini, C., Scaduto, M. C., Santucci, M., & Giovanardi-Rossi, P. (2007) · Journal of Child Neurology · doi:10.1177/0883073807306265 · Cited by 32
The Impact of Health Problems on Behavior Problems in Adolescents and Adults With Autism Spectrum Disorders: Implications for Maternal Burden
Kring, S. R., Greenberg, J. S., & Seltzer, M. M. (2009) · Social Work in Mental Health · doi:10.1080/15332980902932441 · Cited by 37
Participation in Daily Activities of Young Adults with High Functioning Autism Spectrum Disorder
McCollum, M., LaVesser, P., & Berg, C. (2015) · Journal of Autism and Developmental Disorders · doi:10.1007/s10803-015-2642-z · Cited by 32
The Transition Out of High School and into Adulthood for Individuals with Autism and for Their Families
Taylor, J. L. (2009) · International review of research in mental retardation · doi:10.1016/s0074-7750(08)38001-x · Cited by 31
Usage Considerations of 3D Collaborative Virtual Learning Environments to Promote Development and Transfer of Knowledge and Skills for Individuals with Autism
Glaser, N. J., & Schmidt, M. (2018) · Technology Knowledge and Learning · doi:10.1007/s10758-018-9369-9 · Cited by 31
Autism spectrum disorder
Haq, I., & Couteur, A. S. L. (2004) · Medicine · doi:10.1383/medc.32.8.61.43165 · Cited by 38
Profound Autism
Wachtel, L. E., Escher, J., Halladay, A. K., Lutz, A. S. F., Satriale, G. M., Westover, A., & López‐Arvizu, C. (2024) · Pediatric Clinics of North America · doi:10.1016/j.pcl.2023.12.005 · Cited by 32
Electroconvulsive Treatment for Catatonia in Autism Spectrum Disorders
Withane, N., & Dhossche, D. M. (2018) · Child and Adolescent Psychiatric Clinics of North America · doi:10.1016/j.chc.2018.07.006 · Cited by 30
Electroconvulsive Therapy for Catatonia in Children and Adolescents
Dhossche, D. M., & Withane, N. (2018) · Child and Adolescent Psychiatric Clinics of North America · doi:10.1016/j.chc.2018.07.007 · Cited by 30
Autism, Psychosis, or Both? Unraveling Complex Patient Presentations
Chandrasekhar, T., Copeland, J. N., Spanos, M., & Sikich, L. (2019) · Child and Adolescent Psychiatric Clinics of North America · doi:10.1016/j.chc.2019.08.003 · Cited by 29
“Two systematic studies estimate the prevalence of catatonia in ASD to be 12% to 17%.(58,59) Of note, all patients in these studies were diagnosed with comorbid catatonia after adolescence.”
Background
How do autistic people fare in adult life and can we predict it from childhood?
Forbes, G., Kent, R., Charman, T., Baird, G., Pickles, A. R., & Simonoff, E. A. (2022) · Autism Research · doi:10.1002/aur.2868 · Cited by 33
“Many need extensive support for everyday living, face challenges in employment and education, and have limited friendships or time with peers (Billstedt et al., 2005; Bishop-Fitzpatrick et al., 2016; Chamak & Bonniau, 2016; Eaves & Ho, 2008; Farley et al., 2009; Gillberg & Steffenburg, 1987; Gillespie-Lynch et al., 20…”
Background
Increased psychiatric symptoms in university students with autism spectrum disorder are associated with reduced adaptive behavior
Zukerman, G., Yahav, G., & Ben‐Itzchak, E. (2019) · Psychiatry Research · doi:10.1016/j.psychres.2019.01.098 · Cited by 32
Post-Diagnosis Support for Children with Autism Spectrum Disorder, Their Families and CarersPreprint
valentine, K., Rajkovic, M., Dinning, B., & Thompson, D. (2011) · SSRN Electronic Journal · doi:10.2139/ssrn.1792135 · Cited by 31
Self-management for building independence: Research and future directions
Reinecke, D. R., Krokowski, A., & Newman, B. (2016) · International Journal of Educational Research · doi:10.1016/j.ijer.2016.08.006 · Cited by 29
A systematic literature review of video-based interventions to improve integrated competitive employment skills among youth and adults with Autism Spectrum Disorder
Munandar, V. D., Morningstar, M. E., & Carlson, S. R. (2020) · Journal of Vocational Rehabilitation · doi:10.3233/jvr-201083 · Cited by 29
“Unfortunately, employment rates for people with autism spectrum disorder (ASD) have been reported to be low compared to people without disabilities (Billstedt et al., 2005; Hendricks, 2010; Newman et al., 2011), and even compared to people with other disabilities (Shattuck et al., 2012).”
Background
Neurodevelopmental disorders and comorbidity in young adults attending a psychiatric outpatient clinic
Eberhard, D., Billstedt, E., & Gillberg, C. (2022) · Psychiatry Research · doi:10.1016/j.psychres.2022.114638 · Cited by 33
“Persistence of ASD into adulthood tends to be the rule according to prospective long-term follow-up studies (Billstedt et al., 2005; Helles et al., 2015).”
BackgroundSelf-citation

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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