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Autism. 2015 Oct;19(7):794-804. doi: 10.1177/1362361315583818. Epub 2015 May 11.

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

Author information

1
Vanderbilt University, USA katherine.gotham@vanderbilt.edu.
2
Kennedy Krieger Institute, USA.
3
Vanderbilt University, USA.
4
Towson University, USA.
5
Johns Hopkins Bloomberg School of Public Health, USA.
6
Kennedy Krieger Institute, USA Johns Hopkins School of Medicine, USA.

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.

KEYWORDS:

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

PMID:
25964655
PMCID:
PMC4581903
DOI:
10.1177/1362361315583818
[Indexed for MEDLINE]
Free PMC Article

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