Characterizing the daily life, needs, and priorities of adults with autism spectrum disorder from Interactive Autism Network data

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

Research output: Research - peer-reviewArticle

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 subsamples 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.

LanguageEnglish (US)
Pages794-804
Number of pages11
JournalAutism
Volume19
Issue number7
DOIs
StatePublished - Oct 24 2015

Fingerprint

Autistic Disorder
Autism Spectrum Disorder
Legal Guardians
Research
Independent Living
Marriage
Outcome Assessment (Health Care)
Delivery of Health Care
Therapeutics
Surveys and Questionnaires

Keywords

  • adults
  • autism spectrum disorder
  • Interactive Autism Network
  • outcome
  • patient-centered outcome research

ASJC Scopus subject areas

  • Developmental and Educational Psychology

Cite this

Characterizing the daily life, needs, and priorities of adults with autism spectrum disorder from Interactive Autism Network data. / Gotham, Katherine; Marvin, Alison R.; Taylor, Julie Lounds; Warren, Zachary; Anderson, Connie M.; Law, Paul A.; Law, Jessica K.; Lipkin, Paul H.

In: Autism, Vol. 19, No. 7, 24.10.2015, p. 794-804.

Research output: Research - peer-reviewArticle

Gotham K, Marvin AR, Taylor JL, Warren Z, Anderson CM, Law PA et al. Characterizing the daily life, needs, and priorities of adults with autism spectrum disorder from Interactive Autism Network data. Autism. 2015 Oct 24;19(7):794-804. Available from, DOI: 10.1177/1362361315583818
Gotham, Katherine ; Marvin, Alison R. ; Taylor, Julie Lounds ; Warren, Zachary ; Anderson, Connie M. ; Law, Paul A. ; Law, Jessica K. ; Lipkin, Paul H./ Characterizing the daily life, needs, and priorities of adults with autism spectrum disorder from Interactive Autism Network data. In: Autism. 2015 ; Vol. 19, No. 7. pp. 794-804
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