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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Citations
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
Taylor, J. L., & Seltzer, M. M. (2011) · Journal of Autism and Developmental Disorders · doi:10.1007/s10803-010-1070-3 · Cited by 735
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
Levy, A. K., & Perry, A. (2011) · Research in Autism · doi:10.1016/j.rasd.2011.01.023 · Cited by 465
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
Hill, A. P., Zuckerman, K. E., Hagen, A., Kříž, D., Duvall, S. W., van Santen, J. P. H., Nigg, J. T., Fair, D. A., & Fombonne, E. J. (2014) · Research in Autism · doi:10.1016/j.rasd.2014.05.006 · Cited by 316
Aspects of quality of life in adults diagnosed with autism in childhood
Billstedt, E., Gillberg, I. C., & Gillberg, C. (2010) · Autism · doi:10.1177/1362361309346066 · Cited by 268
Outcomes in adults with autism spectrum disorders: a historical perspective
Henninger, N. A., & Taylor, J. L. (2013) · Autism · doi:10.1177/1362361312441266 · Cited by 267 · cited 1×
“…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 adaptive skills of many adult participants (see Henninger and Taylor, 2013; Howlin and Moss, 2012; Levy and Perry, 2011).”
BackgroundSelf-citationAnderson, K. A., Shattuck, P. T., Cooper, B. P., Roux, A. M., & Wagner, M. M. (2013) · Autism · doi:10.1177/1362361313481860 · Cited by 159
Taylor, J. L., DaWalt, L. S., & Seltzer, M. M. (2013) · Journal of Autism and Developmental Disorders · doi:10.1007/s10803-013-2010-9 · Cited by 103
Self-citationDoing Nothing: Adults With Disabilities With No Daily Activities and Their Siblings
Taylor, J. L., & Hodapp, R. M. (2012) · American Journal on Intellectual and Developmental Disabilities · doi:10.1352/1944-7558-117.1.67 · Cited by 94
Self-citationInterventions for Adolescents and Young Adults with Autism Spectrum Disorders
(2013) · PsycEXTRA Dataset · doi:10.1037/e553942013-001 · Cited by 56
Cited by
Sorted by citations
Lord, C., Brugha, T. S., Charman, T., Cusack, J., Dumas, G., Frazier, T., Jones, E. J. H., Jones, R. M., Pickles, A., State, M. W., et al. (2020) · Nature Reviews Disease Primers · doi:10.1038/s41572-019-0138-4 · Cited by 1,859
Self-citationIdentifying the lost generation of adults with autism spectrum conditions
Lai, M.-C., & Baron-Cohen, S. (2015) · The Lancet Psychiatry · doi:10.1016/s2215-0366(15)00277-1 · Cited by 756
Autism spectrum disorder: outcomes in adulthood
Howlin, P., & Magiati, I. (2017) · Current Opinion in Psychiatry · doi:10.1097/yco.0000000000000308 · Cited by 457
‘Something needs to change’: Mental health experiences of young autistic adults in England
Crane, L., Adams, F., Harper, G., Welch, J., & Pellicano, E. (2019) · Autism · doi:10.1177/1362361318757048 · Cited by 397
Predictors of quality of life for autistic adults
Mason, D., McConachie, H., Garland, D., Petrou, A., Rodgers, J., & Parr, J. R. (2018) · Autism Research · doi:10.1002/aur.1965 · Cited by 327
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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