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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 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]
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“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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Metadata
- 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 › Education › 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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