Cited by 217Autism Spectrum Disorder ResearchDisability Education and EmploymentFamily and Disability Support Research

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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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Gotham, Katherine, Marvin, Alison R, Taylor, Julie Lounds, Warren, Zachary, Anderson, Connie M, Law, Paul A, Law, Jessica K, Lipkin, Paul H·2015·Autism

DOI 10.1177/1362361315583818PMC PMC4581903

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Abstract

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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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).”
Background
Postsecondary 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-citation
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Employment and Post-Secondary Educational Activities for Young Adults with Autism Spectrum Disorders During the Transition to Adulthood
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Self-citation
Autism and Developmental Receptive Language Disorder—a Follow-up Comparison in Early Adult Life. II: Social, Behavioural, and Psychiatric Outcomes
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Adults with Autism Spectrum Disorders
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“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…”
Background
Outcomes in adolescents and adults with autism: A review of the literature
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“…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).”
Background
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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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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
ORCID: Gotham, Katherine
Taylor, Julie Lounds
Warren, Zachary
Law, Jessica K
Lipkin, Paul H
Venue: Autism
Publisher: SAGE Publications
Published: 2015-05-11
Volume: 19
Issue: 7
Pages: 794-804
ISSN: 1362-3613 (ISSN-L)
1461-7005
DOI: 10.1177/1362361315583818
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
Licence: journals.sagepub.com/page/policies/text-and-data-mining-license (tdm)
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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Characterizing the daily life, needs, and priorities of adults with autism spectrum disorder from Interactive Autism Network data

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