The DOI matches its Crossref record; 17 of the 17 references it cites were found in a registry or an index.
Characterizing the daily life, needs, and priorities of adults with autism spectrum disorder from Interactive Autism Network data
Open accessAbstract
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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Cites
Shared decision making — The pinnacle of patient-centered care
Barry, M. J., & Edgman-Levitan, S. (2012) · New England Journal of Medicine · doi:10.1056/nejmp1109283 · Cited by 3,433 · cited 2×
“Patient-centered outcomes research has been effecting change among the medical community as a method of better understanding patients’ experiences and needs and in turn helping them to make informed health care decisions (Barry and Edgman-Levitan, 2012).”
BackgroundPostsecondary education and employment among youth with an autism spectrum disorder
Shattuck, P. T., Narendorf, S. C., Cooper, B., Sterzing, P. R., Wagner, M., & Taylor, J. L. (2012) · PEDIATRICS · doi:10.1542/peds.2011-2864 · Cited by 1,110
Self-citationGreene, J., & Hibbard, J. H. (2011) · Journal of General Internal Medicine · doi:10.1007/s11606-011-1931-2 · Cited by 1,028
What should autism research focus upon? Community views and priorities from the United Kingdom
Pellicano, E., Dinsmore, A., & Charman, T. (2014) · Autism · doi:10.1177/1362361314529627 · Cited by 800
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Self-citationHowlin, P., Mawhood, L., & Rutter, M. L. (2000) · Journal of Child Psychology and Psychiatry · doi:10.1111/1469-7610.00643 · Cited by 587
Adults with Autism Spectrum Disorders
Howlin, P., & Moss, P. (2012) · The Canadian Journal of Psychiatry · doi:10.1177/070674371205700502 · Cited by 559 · cited 2×
“Consensus among most reports is that the majority of adults with ASD have “poor” outcomes in these areas: with the exception of attainment of functional language in 70%–80% of most samples, reports indicate generally low levels of vocational and social engagement even in relation to overall cognitive, language, and ad…”
BackgroundOutcomes in adolescents and adults with autism: A review of the literature
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Cassidy, S., Bradley, P., Robinson, J., Allison, C., McHugh, M., & Baron-Cohen, S. (2014) · The Lancet Psychiatry · doi:10.1016/s2215-0366(14)70248-2 · Cited by 432 · cited 1×
“…representative of many of the research samples of adults who have been carefully phenotyped since their early childhood, it does, however, represent an adult ASD population about whom little is known beyond preliminary reports of significant risk and high health care needs (Cassidy et al., 2014).”
BackgroundSocial Participation Among Young Adults with an Autism Spectrum Disorder
Orsmond, G. I., Shattuck, P. T., Cooper, B. P., Sterzing, P. R., & Anderson, K. A. (2013) · Journal of Autism and Developmental Disorders · doi:10.1007/s10803-013-1833-8 · Cited by 415
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Benecke, R. M., Williams, Z. J., Holmes, L. G., Miller, J. S., & Kaplan‐Kahn, E. A. (2026) · Autism Research · doi:10.1002/aur.70161
Dwyer, P. S. R. (2025) · Psychological Inquiry · doi:10.1080/1047840x.2025.2605591
Yorke, I., Choudhury, A. R., Boatman, C. A., Oakley, B. F. M., Law, M. L., Holt, R., Colomar, L., Forde, N. J., Conde, P., Sankesara, H., et al. (2026) · Research Square · doi:10.21203/rs.3.rs-9381221/v1
Stanojević, Č., Bennett, C. C., Manupati, S., Yuan, S., Moothkuri, S., Abbott, N., Li, F., Murphy, A., & Zaidi, F. (2026) · International Journal of Disability Development and Education · doi:10.1080/1034912x.2026.2666512
Choudhury, A. R., Yorke, I., Boatman, C. A., Oakley, B., Law, M. L., Holt, R., Colomar, L., Forde, N. J., Conde, P., Sankesara, H., et al. (2026) · doi:10.2196/preprints.101864
Muller-Kosmarov, C., & Chapman, R. (2026) · Oxford University Press eBooks · doi:10.1093/9780197852668.003.0035
Akkaş, Ö., Kan, Ö. Y., Köse, S., & Bildik, T. (2026) · BMC Medical Education · doi:10.1186/s12909-026-09729-z
Autistic identity dimensions correlate with wellbeing and daily living in autistic adults
Terroso, S. R., Gotham, K. O., & McDonald, T. M. (2026) · Research in Autism · doi:10.1016/j.reia.2026.202972
Self-citationContreras-Pérez, M. E., Tao, X., Vezina, O. A., Spirito, A., Sheinkopf, S. J., Cragin, C. A., & Jackson, K. M. (2026) · Autism in Adulthood · doi:10.1177/25739581261474766
Kuca, J., Stencel, M., Pilarski, B., Florek, S., & Pudło, R. (2026) · Frontiers in Psychiatry · doi:10.3389/fpsyt.2026.1833853 · Cited by 1
Gisbert-Gustemps, L., Martínez-Ramírez, M., Setién-Ramos, I., Restoy, D., Ramos-Quiroga, J., & Lugo-Marín, J. (2026) · Autism · doi:10.1177/13623613261483298
Current Knowledge of Emotion Regulation: The Autistic Experience
Bradley, R. S., Onovbiona, H., del Rosario, E.-A., & Quetsch, L. B. (2023) · IntechOpen eBooks · doi:10.5772/intechopen.1000222 · Cited by 2
Obesity Management in Autistic Adults: Toward a Neurodiversity-Informed Approach
Rao, N. P., & Wadford, A. M. (2026) · Autism in Adulthood · doi:10.1177/25739581261497850
Russell, A. C., Cremen, C., Kirby, A. V., & Melia, R. (2026) · Journal of Autism and Developmental Disorders · doi:10.1007/s10803-026-07573-0
WHITE, S. W., Ionadi, A., Friedman, N. R., & MAZEFSKY, C. A. (2026) · Wiley eBooks · doi:10.1002/9781394389933.ch8
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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