title: Characterizing the daily life, needs, and priorities of adults with autism spectrum disorder from Interactive Autism Network data.
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.
authors.affiliation: Vanderbilt University, USA katherine.gotham@vanderbilt.edu.
authors.forename: Katherine
authors.initials: K
authors.lastname: Gotham
authors.affiliation: Kennedy Krieger Institute, USA.
authors.forename: Alison R
authors.initials: AR
authors.lastname: Marvin
authors.affiliation: Vanderbilt University, USA.
authors.forename: Julie Lounds
authors.initials: JL
authors.lastname: Taylor
authors.affiliation: Vanderbilt University, USA.
authors.forename: Zachary
authors.initials: Z
authors.lastname: Warren
authors.affiliation: Towson University, USA.
authors.forename: Connie M
authors.initials: CM
authors.lastname: Anderson
authors.affiliation: Johns Hopkins Bloomberg School of Public Health, USA.
authors.forename: Paul A
authors.initials: PA
authors.lastname: Law
authors.affiliation: Kennedy Krieger Institute, USA Johns Hopkins School of Medicine, USA.
authors.forename: Jessica K
authors.initials: JK
authors.lastname: Law
authors.affiliation: Kennedy Krieger Institute, USA Johns Hopkins School of Medicine, USA.
authors.forename: Paul H
authors.initials: PH
authors.lastname: Lipkin
mesh_terms: D000203:Activities of Daily Living / Q000523:psychology*; D000293:Adolescent; D000328:Adult; D000368:Aged; D000067877:Autism Spectrum Disorder / Q000453:epidemiology / Q000523:psychology*; D004522:Educational Status; D004651:Employment / Q000706:statistics & numerical data; D005260:Female; D006301:Health Services Needs and Demand / Q000706:statistics & numerical data; D006801:Humans; D008297:Male; D008875:Middle Aged; D012106:Research; D055815:Young Adult
keywords: Interactive Autism Network; adults; autism spectrum disorder; outcome; patient-centered outcome research