Autism after adolescence: population-based 13- to 22-year follow-up study of 120 individuals with autism diagnosed in childhood
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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Acquiring spoken language before age five has been heralded as the single most important achievement leading to the best social outcomes for children with autism.
“Indeed, acquiring spoken language before age five has been heralded as the single most important achievement leading to the best social outcomes of children with autism.9,10,11,12”
From Longitudinal follow-up of children with autism receiving targeted interventions on joint attention and play (2012) · cites this paper as [9]
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BackgroundInfluentialSelf-citationGelbar, N. W., Smith, I., & Reichow, B. (2014) · Journal of Autism and Developmental Disorders · doi:10.1007/s10803-014-2135-5 · Cited by 381 · see citing works
“This emphasis on transition coupled with data on the poor post-school outcomes for individuals with ASD (Billstedt et al. 2005; Henninger and Taylor 2013) indicate the importance of research exploring experiences of higher-functioning individuals as they exit the”
BackgroundRogers, J. P., Oldham, C. M., Fricchione, G. L., Northoff, G., Wilson, J. E., Mann, S. C., Francis, A., Wieck, A., Wachtel, L. E., Lewis, G., et al. (2023) · Journal of Psychopharmacology · doi:10.1177/02698811231158232 · Cited by 267 · see citing works
“International studies over the past two decades have documented a point prevalence of catatonia ranging from 12% to 20% in individuals with autism, with onset most commonly in adolescence and early adulthood (Billstedt et al., 2005; Breen and Hare, 2017; Wing and Shah, 2000).”
Hourcade, J. P., Bullock-Rest, N. E., & Hansen, T. E. (2011) · Personal and Ubiquitous Computing · doi:10.1007/s00779-011-0383-3 · Cited by 240 · see citing works
“Eaves and Ho [10] classified roughly half as having “poor” outcomes in spite of being diagnosed in preschool, and other estimates put the percentage of adults living independently between 4 and 12 percent [4, 27].”
BackgroundAutism spectrum disorder: advances in evidence-based practice
Anagnostou, E. A., Zwaigenbaum, L., Szatmári, P., Fombonne, E. J., Fernandez, B. A., Woodbury‐Smith, M., Brian, J. A., Bryson, S. E., Smith, I. M., Drmic, I., et al. (2014) · Canadian Medical Association Journal · doi:10.1503/cmaj.121756 · Cited by 234 · see citing works
Morrison, K. E., DeBrabander, K. M., Jones, D. R., Faso, D. J., Ackerman, R. A., & Sasson, N. J. (2019) · Autism · doi:10.1177/1362361319892701 · Cited by 233 · see citing works
“First, many are simply a count of the number and type of interactions autistic people have, primarily relying on informant reports (e.g. Billstedt et al., 2005; Howlin et al., 2004).”
BackgroundPicci, G., & Scherf, K. S. (2014) · Clinical Psychological Science · doi:10.1177/2167702614540646 · Cited by 229 · see citing works
“Finally, we suggest that the role of pubertal development must be evaluated in the context of these other areas of research given the impressive pubertal deterioration that has been reported in the literature (Billstedt et al., 2005; Gillberg & Steffenburg, 1987) and the reports of the influence of pubertal maturation…”
BackgroundEarly diagnosis of autism and impact on prognosis: a narrative review
Fernell, E., Eriksson, �., & Gillberg, C. (2013) · Clinical Epidemiology · doi:10.2147/clep.s41714 · Cited by 223 · see citing works
“Childhood IQ level was positively correlated with better adult outcome, as was the existence of some communicative phrase speech at the age of 6 years.(96) A similar prognosis, with 59% showing a poor or very poor outcome, was also reported in a previous Swedish study.”
Self-citationRediscovering catatonia: the biography of a treatable syndrome
Fink, M. (2012) · Acta Psychiatrica Scandinavica · doi:10.1111/acps.12038 · Cited by 220 · see citing works
“Two formal surveys find catatonia in 12–17% of adolescents otherwise labeled with autism (143, 144).”
BackgroundYoder, P. J., Watson, L. R., & Lambert, W. E. (2014) · Journal of Autism and Developmental Disorders · doi:10.1007/s10803-014-2286-4 · Cited by 216 · see citing works
“…used frequently, communicatively, referentially, and in a semantically diverse manner, by the end of the preschool years predicts later social and vocational success for individuals with ASD (Billstedt et al. 2005; DeMyer et al. 1973; Howlin et al. 2000; Kobayashi et al. 1992; Venter et al. 1992).”
BackgroundDifferent Functional Neural Substrates for Good and Poor Language Outcome in Autism
Lombardo, M. V., Pierce, K., Eyler, L. T., Barnes, C. C., Ahrens‐Barbeau, C., Solso, S., Campbell, K. M., & Courchesne, E. (2015) · Neuron · doi:10.1016/j.neuron.2015.03.023 · Cited by 209 · see citing works
“…of symptom severity (Gotham et al., 2012), alongside the predictive power of early language levels on later outcomes (Bennett et al., 2008; Billstedt et al., 2005; Gillberg and Steffenburg, 1987; Gotham et al., 2012; Howlin, 2003; Howlin et al., 2000; Howlin et al., 2014; Szatmari et al.,…”
Steinhausen, H., Jensen, C. M., & Lauritsen, M. B. (2016) · Acta Psychiatrica Scandinavica · doi:10.1111/acps.12559 · Cited by 213 · see citing works
“Three of the fifteen studies were not included in the analyses, as they were the earliest follow-up assessments in a series of outcome studies (8, 14, 15).”
BackgroundA systematic review of two outcomes in autism spectrum disorder: epilepsy and mortality.
WOOLFENDEN, S., SARKOZY, V., RIDLEY, G., COORY, M., & WILLIAMS, K. (2012) · Developmental Medicine & Child Neurology · doi:10.1111/j.1469-8749.2012.04223.x · Cited by 206 · see citing works
Lounds, J. J., Seltzer, M. M., Greenberg, J. S., & Shattuck, P. T. (2007) · American Journal on Mental Retardation · doi:10.1352/0895-8017(2007)112[401:taciaa]2.0.co;2 · Cited by 210 · see citing works
“With regard to health, comorbid physical health problems are common among individuals with ASD, affecting 25% to 50% of this population (Billstedt et al., 2005; Bryson & Smith, 1998).”
BackgroundInfluentialEarly Childhood Predictors of the Social Competence of Adults with Autism
Gillespie‐Lynch, K., Sepeta, L. N., Wang, Y., Marshall, S. N., Gomez, L., Sigman, M., & Hutman, T. (2011) · Journal of Autism and Developmental Disorders · doi:10.1007/s10803-011-1222-0 · Cited by 201 · see citing works
Authenticity in Virtual Reality for assessment and intervention in autism: A conceptual review
Parsons, S. (2016) · Educational Research Review · doi:10.1016/j.edurev.2016.08.001 · Cited by 197 · see citing works
A systematic review of the diagnostic stability of Autism Spectrum Disorder
Woolfenden, S. R., Sarkozy, V., Ridley, G. F., & Williams, K. J. (2011) · Research in Autism · doi:10.1016/j.rasd.2011.06.008 · Cited by 197 · see citing works
A Systematic Review of Vocational Interventions for Young Adults With Autism Spectrum Disorders
Taylor, J. L., McPheeters, M. L., Sathe, N. A., Dove, D., Veenstra-VanderWeele, J., & Warren, Z. (2012) · Pediatrics · doi:10.1542/peds.2012-0682 · Cited by 187 · see citing works
Children with autism spectrum disorders who do not develop phrase speech in the preschool years
Norrelgen, F., Fernell, E., Eriksson, M. A., Hedvall, Å., Persson, C., Sjölin, M., Gillberg, C., & Kjellmer, L. (2014) · Autism · doi:10.1177/1362361314556782 · Cited by 188 · see citing works
“Negative prognostic factors have been linked to low general cognitive function combined with low level of communicative phrase speech at the age of 6 years (Billstedt et al., 2005).”
BackgroundSelf-citationA meta-analysis of working memory in individuals with autism spectrum disorders
Habib, A., Harris, L., Pollick, F., & Melville, C. (2019) · PLOS ONE · doi:10.1371/journal.pone.0216198 · Cited by 179 · see citing works
Burke, R. V., Andersen, M. N., Bowen, S. L., Howard, M. R., & Allen, K. D. (2010) · Research in Developmental Disabilities · doi:10.1016/j.ridd.2010.07.023 · Cited by 171 · see citing works
Mortality and causes of death in autism spectrum disorders: An update
Mouridsen, S. E., Brønnum-Hansen, H., Rich, B., & Isager, T. (2008) · Autism · doi:10.1177/1362361308091653 · Cited by 172 · see citing works
Measuring catatonia: A systematic review of rating scales
Sienaert, P. A., Rooseleer, J., & Fruyt, J. D. (2011) · Journal of Affective Disorders · doi:10.1016/j.jad.2011.02.012 · Cited by 170 · see citing works
“Recently, it was shown that themajority of patients with antiNMDA-receptor-encephalitis present catatonic symptoms (Dalmau et al., 2008), and that in adolescents with autism the prevalence of catatonia is between 12 and 17% (Billstedt et al., 2005; Wing and Shah, 2000).”
BackgroundEvaluation of tablet apps to encourage social interaction in children with autism spectrum disorders
Hourcade, J. P., Williams, S. R., Miller, E. A., Huebner, K. E., & Liang, L. J. (2013) · CHI Conference on Human Factors in Computing Systems · doi:10.1145/2470654.2466438 · Cited by 167 · see citing works
“But even for those who benefited from early intervention, the percentage of adults with ASDs who can live independently remains low [3, 14, 32].”
BackgroundImpairments of Social Motor Synchrony Evident in Autism Spectrum Disorder
Fitzpatrick, P., Frazier, J. A., Cochran, D., Mitchell, T. V., Coleman, C., & Schmidt, R. C. (2016) · Frontiers in Psychology · doi:10.3389/fpsyg.2016.01323 · Cited by 168 · see citing works
“…by: Hanne De Jaegher, University of the Basque Country, Spain Reviewed by: Bert Timmermans, University of Aberdeen, UK Mohamed Chetouani, Pierre-and-Marie-Curie University, France *Correspondence: Paula Fitzpatrick pfitzpat@assumption.edu Specialty section: This article was…”
BackgroundExamining the Validity of Autism Spectrum Disorder Subtypes
Witwer, A. N., & Lecavalier, L. (2008) · Journal of Autism and Developmental Disorders · doi:10.1007/s10803-008-0541-2 · Cited by 164 · see citing works
Anderson, K. A., Shattuck, P. T., Cooper, B. P., Roux, A. M., & Wagner, M. M. (2013) · Autism · doi:10.1177/1362361313481860 · Cited by 159 · see citing works
“Our findings mirror those of prior research: rates of independent living are low for young adults with an ASD (Billstedt et al., 2005; Howlin et al., 2004; Newman et al., 2011).”
BackgroundResultSocial media use among adults with autism spectrum disorders
Mazurek, M. O. (2013) · Computers in Human Behavior · doi:10.1016/j.chb.2013.02.004 · Cited by 159 · see citing works
Social and behavioral problems of children with agenesis of the corpus callosum
Badaruddin, D. H., Andrews, G. L., Bölte, S., Schilmoeller, K. J., Schilmoeller, G., Paul, L. K., & Brown, W. S. (2007) · Child Psychiatry and Human Development · doi:10.1007/s10578-007-0065-6 · Cited by 150 · see citing works
“These problems tend to remain stable throughout the lifespan [36, 37].”
BackgroundPeters-Scheffer, N., Didden, R., Korzilius, H., & Matson, J. (2012) · Research in Developmental Disabilities · doi:10.1016/j.ridd.2012.04.006 · Cited by 148 · see citing works
Cheak‐Zamora, N., Teti, M., & First, J. M. (2015) · Journal of Applied Research in Intellectual Disabilities · doi:10.1111/jar.12150 · Cited by 154 · see citing works
Burgess, S., & Cimera, R. E. (2014) · American Journal on Intellectual and Developmental Disabilities · doi:10.1352/1944-7558-119.1.64 · Cited by 155 · see citing works
Tonge, B. J., Brereton, A. V., Kiomall, M. C., Mackinnon, A. J., & Rinehart, N. (2012) · Autism · doi:10.1177/1362361312458186 · Cited by 155 · see citing works
“Autism is associated with burden and stress for parents, families and carers, and the outcome for people with autism is generally poor, requiring ongoing care by families and the community (Billstead et al., 2005; Howlin et al., 2004).”
BackgroundPatterns of Growth in Adaptive Social Abilities Among Children with Autism Spectrum Disorders
Anderson, D. K., Oti, R., Lord, C., & Welch, K. (2009) · Research on Child and Adolescent Psychopathology · doi:10.1007/s10802-009-9326-0 · Cited by 151 · see citing works
“1992), or less standardized measures coding friendships, living arrangements, and employment or educational placements (Billstedt et al. 2005; Eaves and Ho 2008; Gillberg and Steffenburg 1987; Howlin et al. 2004), greater initial cognitive abilities generally predict a more positive social outcome later in life.”
BackgroundResultThe Prevalence of Self-injurious Behaviour in Autism: A Meta-analytic Study
Steenfeldt-Kristensen, C., Jones, C. A., & Richards, C. (2020) · Journal of Autism and Developmental Disorders · doi:10.1007/s10803-020-04443-1 · Cited by 150 · see citing works
A quarter century of progress on the early detection and treatment of autism spectrum disorder
Dawson, G., & Bernier, R. (2013) · Development and Psychopathology · doi:10.1017/s0954579413000710 · Cited by 152 · see citing works
Wehman, P., Brooke, V., Brooke, A. M., Ham, W., Schall, C. M., McDonough, J., Lau, S. J., Seward, H. E., & Avellone, L. (2016) · Research in Developmental Disabilities · doi:10.1016/j.ridd.2016.01.015 · Cited by 147 · see citing works
Cederlund, M., Hagberg, B., & Gillberg, C. (2010) · Research in Developmental Disabilities · doi:10.1016/j.ridd.2009.09.006 · Cited by 145 · see citing works
Self-citationSerret, S., Hun, S., Iakimova, G., Lozada, J., Anastassova, M., Santos, A., Vesperini, S., & Askenazy-Gittard, F. (2014) · Molecular Autism · doi:10.1186/2040-2392-5-37 · Cited by 150 · see citing works
“These are complex and heterogeneous disorders affecting the quality of reciprocal social interactions, which is one of the most persistent symptoms in ASC [2].”
BackgroundPatterns of developmental trajectories in toddlers with autism spectrum disorder
Lord, C., Luyster, R., Guthrie, W., & Pickles, A. (2012) · Journal of Consulting and Clinical Psychology · doi:10.1037/a0027214 · Cited by 142 · see citing works
Adult Outcomes in Autism: Community Inclusion and Living Skills
Gray, K. M., Keating, C. M., Taffe, J. R., Brereton, A. V., Einfeld, S., Reardon, T. C., & Tonge, B. J. (2014) · Journal of Autism and Developmental Disorders · doi:10.1007/s10803-014-2159-x · Cited by 144 · see citing works
“Consistent with previous research (for example BallabanGil et al. 1996; Billstedt et al. 2005; Howlin 2000; Howlin et al. 2004, 2013), the majority of individuals with autism were either living with their parents or were in care.”
BackgroundMason, D., Capp, S. J., Stewart, G. R., Kempton, M. J., Glaser, K., Howlin, P., & Happe, F. G. E. (2020) · Journal of Autism and Developmental Disorders · doi:10.1007/s10803-020-04763-2 · Cited by 142 · see citing works
Palmen, A., Didden, R., & Lang, R. B. (2011) · Research in Autism · doi:10.1016/j.rasd.2011.10.001 · Cited by 139 · see citing works
Parents’ and young adults’ perspectives on transition outcomes for young adults with autism
Sosnowy, C. D., Silverman, C., & Shattuck, P. T. (2017) · Autism · doi:10.1177/1362361317699585 · Cited by 138 · see citing works
“(2011) made efforts to remedy this shortcoming by reevaluating a sample from an earlier study (Billstedt et al., 2005), adding measures of the relationship between the person and his/her environment.”
BackgroundSzatmari, P., Bryson, S., Duku, E., Vaccarella, L., Zwaigenbaum, L., Bennett, T., & Boyle, M. H. (2009) · Journal of Child Psychology and Psychiatry · doi:10.1111/j.1469-7610.2009.02123.x · Cited by 136 · see citing works
Ekström, A., Hakenäs‐Plate, L., Samuelsson, L., Tulinius, M., & Wentz, E. (2008) · American Journal of Medical Genetics Part B: Neuropsychiatric Genetics · doi:10.1002/ajmg.b.30698 · Cited by 136 · see citing works
“In ASC, repetitive behavior and stereotypies is common in addition to self-injurious behavior [Nordin and Gillberg, 1998; Billstedt et al., 2005].”
BackgroundTrajectory of Behavior and Emotional Problems in Autism
Gray, K. M., Keating, C. M., Taffe, J. R., Brereton, A. V., Einfeld, S., & Tonge, B. J. (2012) · American Journal on Intellectual and Developmental Disabilities · doi:10.1352/1944-7588-117-2.121 · Cited by 137 · see citing works
Liptak, G. S., Kennedy, J. A., & Dosa, N. P. (2011) · Journal of Developmental & Behavioral Pediatrics · doi:10.1097/dbp.0b013e31820b49fc · Cited by 136 · see citing works
“The 6 categories used in this model (and examples related to autism) include the following: (1) Health Condition (autism), (2) Body Function and Structure (speech and language), (3) Activities (communication), (4) Participation (social contacts, work, and independence), (5) Environment (physical, social, cultural, or…”
MethodSelective serotonin reuptake inhibitors (SSRIs) for autism spectrum disorders (ASD)
Williams, K., Wheeler, D. M., Silove, N., & Hazell, P. (2010) · Cochrane Database of Systematic Reviews · doi:10.1002/14651858.cd004677.pub2 · Cited by 131 · see citing works
Autism Plus Versus Autism Pure
Gillberg, C., & Fernell, E. (2014) · Journal of Autism and Developmental Disorders · doi:10.1007/s10803-014-2163-1 · Cited by 132 · see citing works
Self-citationCatatonia in autism spectrum disorders: A systematic review and meta-analysis
Vaquerizo‐Serrano, J., de Pablo, G. S., Singh, J., & Santosh, P. (2021) · European Psychiatry · doi:10.1192/j.eurpsy.2021.2259 · Cited by 139 · see citing works
“Seven studies had data that allowed meta-analysis, comprising 969 individuals [33,37,38,40,41,43,44].”
BackgroundInfluentialA comprehensive survey of current and former college students with autism spectrum disorders.
Gelbar, N. W., Shefyck, A., & Reichow, B. (2015) · Europe PMC (PubMed Central) · Cited by 131 · see citing works
Kamp‐Becker, I., Schröder, J., Remschmidt, H., & Bachmann, C. (2010) · PubMed Central · doi:10.3205/psm000065 · Cited by 130 · see citing works
“Studies in this population which focused on the social outcome (mostly defined by objective factors like educational attainment, independence or employment [20], [21], [22]) have demonstrated heterogenous findings, ranging from good to very poor outcomes [23].”
Emergency Department Use Among Adults with Autism Spectrum Disorders (ASD)
Vohra, R., Madhavan, S., & Sambamoorthi, U. (2016) · Journal of Autism and Developmental Disorders · doi:10.1007/s10803-015-2692-2 · Cited by 130 · see citing works
“Even though adults with ASD have considerable healthcare needs (Billstedt et al. 2005; Magiati et al. 2014), there is a lack of comprehensive documentation of characteristics and patterns of ED use among this group.”
Supporting university students with autism spectrum disorder
Hillier, A. J., Goldstein, J., Murphy, D. A., Trietsch, R., Keeves, J., Mendes, E. C. D. C. S., & Queenan, A. (2017) · Autism · doi:10.1177/1362361317699584 · Cited by 134 · see citing works
Mortality in Autism: A Prospective Longitudinal Community-Based Study
Gillberg, C., Billstedt, E., Sundh, V., & Gillberg, I. C. (2009) · Journal of Autism and Developmental Disorders · doi:10.1007/s10803-009-0883-4 · Cited by 129 · see citing works
Self-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
- Venue
- Journal of Autism and Developmental Disorders
- Published
- 2005-06
- Volume
- 35
- Issue
- 3
- Pages
- 351-360
- ISSN
- 0162-3257 (ISSN-L)
- 1573-3432
- 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 › Safety Research › 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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