Characterizing the daily life, needs, and priorities of adults with autism spectrum disorder from Interactive Autism Network data.
Adults with autism say life skills, jobs, healthcare, and public acceptance are the urgent gaps services must fill.
01Research in Context
What this study did
Gotham et al. (2015) ran a big online survey through the Interactive Autism Network.
They asked adults with autism and parents what daily life is like and what research should tackle next.
The team sorted thousands of answers into top priorities.
What they found
Life skills, jobs, healthcare access, and public acceptance topped the wish list.
Many adults, especially those diagnosed late, said these needs are still unmet.
High rates of other health conditions added to the load.
How this fits with other research
Cox (2012) had already warned that adults with autism are "system orphans"; the 2015 numbers back that up with data.
Ghanouni et al. (2021) zoomed in on independent living and found the same three barriers the survey flagged: emotional control, money skills, and community ties.
Lineberry et al. (2023) tracked UK adults and showed less than 40 % get any support within a year of diagnosis, turning the 2015 priority list into 11 concrete service fixes.
Huang et al. (2020) pulled earlier work together and noted chaotic adult diagnosis paths; Katherine’s data show why clear post-diagnosis pathways are crucial.
Why it matters
If you write transition plans or adult goals, use the four priority buckets: life skills, employment, healthcare navigation, and stigma reduction.
Add a checklist for late-diagnosed clients; they are the group most likely to have unmet needs.
Pair the list with local autism-specific services, because Cascio et al. (2022) show adults and families prefer specialized over generic programs.
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02At a glance
03Original 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.
Autism : the international journal of research and practice, 2015 · doi:10.1177/1362361315583818