Characterizing the daily life, needs, and priorities of adults with autism spectrum disorder from Interactive Autism Network data
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Using online survey data from a large sample of adults with autism spectrum disorder and legal guardians, we first report outcomes across a variety of contexts for participants with a wide range of functioning, and second, summarize these stakeholders’ priorities for future research. The sample included n = 255 self-reporting adults with autism spectrum disorder aged 18–71 years (M = 38.5 years, standard deviation = 13.1 years) and n = 143 adults with autism spectrum disorder aged 18–58 years (M = 25.0 years, standard deviation = 8.2 years) whose information was provided by legal guardians. Although the self-reporting subsample had much higher rates of employment, marriage/partnership, and independent living than are typically seen in autism spectrum disorder outcome studies, they remained underemployed and had strikingly high rates of comorbid disorders. Data on both descriptive outcomes and rated priorities converged across subsamples to indicate the need for more adult research on life skills, treatments, co-occurring conditions, and vocational and educational opportunities. Stakeholders also placed priority on improving public services, health care access, and above all, public acceptance of adults with autism spectrum disorder. Findings must be interpreted in light of the self-reporting subsample’s significant proportion of females and of later-diagnosed individuals. This study underscores the need for lifespan research; initiatives will benefit from incorporating information from the unique perspectives of adults with autism spectrum disorder and their families.
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More recent research suggests that women with ASD may have a more difficult time maintaining employment positions and are more likely to camouflage their ASD symptoms than men, which can lead to mental health challenges.
“more recent research suggests that women with ASD may have a more difficult time maintaining employment positions 226 , and are more likely to ' camouflage ' their ASD symptoms than men, which can lead to mental health challenges 227 .”
From Autism spectrum disorder (2020) · cites this paper as [226]
The Results (Education and vocation; page unavailable) report that many adults with ASD found the workplace too challenging, supporting the general point about difficulty with employment. The Discussion (page unavailable) says gender differences would be reported separately, so this paper does not establish that women have more difficulty maintaining employment than men. The camouflage claim has a separate citation and is not assessed here. (LLM, conf=0.88)
Experimental — accuracy not yet measuredBroadly, societal acceptance and inclusion were also identified as a top priority by Gotham et al. (2015), as expressed by stakeholders in that study.
“Broadly, societal acceptance and inclusion were also identified as a top priority by Gotham et al. (2015), as expressed by stakeholders in that study.”
From Listening to the autistic voice: Mental health priorities to guide research and practice in autism from a stakeholder-driven project (2020) · cites this paper as Gotham et al., 2015
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Adult Life for People with Autism Spectrum Disorders
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- Authors
- Gotham, K., Marvin, A. R., Taylor, J. L., Warren, Z., Anderson, C. M., Law, P. A., Law, J. K., & Lipkin, P. H.
- Affiliations
- Vanderbilt University (US)
- Kennedy Krieger Institute (US)
- Towson University (US)
- Johns Hopkins University (US)
- Corresponding author
- Gotham, Katherine
- Venue
- Autism
- Publisher
- SAGE Publications
- Published
- 2015-05-11
- Volume
- 19
- Issue
- 7
- Pages
- 794-804
- ISSN
- 1362-3613 (ISSN-L)
- 1461-7005
- PMC
- PMC4581903
- OpenAlex
- W1927816754
- Cited by
- 217
- References
- 17
- Citations by year
- 2026: 18 · 2025: 19 · 2024: 33 · 2023: 21 · 2022: 18 · 2021: 24 · 2020: 27 · 2019: 24 · 2018: 13 · 2017: 10 · 2016: 7 · 2015: 3
- FWCI
- 6.61
- Type
- journal article
- Language
- en
- Open access
- green
- www.ncbi.nlm.nih.gov
- Locations
- Autism (publishedVersion)
- PubMed (publishedVersion)
- PubMed Central (acceptedVersion)
- Funders
- Autism Speaks
- Vanderbilt Institute for Clinical and Translational Research
- Autism Research Institute
- National Institutes of Health (UL1TR000445)
- Institute for Clinical and Translational Research, University of Wisconsin, Madison
- National Institute of Mental Health (T32 MH 18921, K01-MH103500-01A1, T32MH018921, K01MH092598, K01MH103500)
- National Center for Advancing Translational Sciences
- Eunice Kennedy Shriver National Institute of Child Health and Human Development (U54HD083211)
- 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, autistic adults, employment, independent living, comorbidities, life skills, employment opportunities, educational opportunities, health care access, public acceptance, legal guardians, gender differences
- MeSH terms
- Autism Spectrum Disorder, Activities of Daily Living, Adolescent, Adult, Aged, Educational Status, Employment, Female, Health Services Needs and Demand, Humans, Male, Middle Aged, Research, Young Adult
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Registry, retraction, Cites and statistics results are computed, not judged, with one exception: a printed reference that no index lists is read once by a model before it counts as a citation error. Claims are extracted by a model and kept only when their quote appears verbatim in the text; each cited source is then checked, with a model’s help, for whether it says what the claim relies on. Those verdicts can be wrong — read the claim’s quote and the cited source before relying on one.
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