Characterizing the Daily Life, Needs, and Priorities of Adults with ASD

Background: Consensus among most reports is that the majority of adults with autism spectrum disorder (ASD) have poor outcomes in terms of independent living, employment, and friendship/social engagement. In a recent study by Pellicano and co-authors (2014), individuals with ASD and their families indicated that future priorities for autism research should lie in practical areas that make a difference in daily life. This study replicates and extends those findings from the adult perspective.

Objectives: Using survey data from a large sample of adults with ASD and parents/caregivers of the same, we aim to (1) describe the lives of both “high-functioning” and less-able adults with ASD in terms of education, jobs, housing, financial support, adaptive skills, strengths and special interests, physical and mental health, treatment and service use; and (2) summarize these stakeholders’ priorities for future research.

Methods: Data were obtained from the Interactive Autism Network (IAN), an elective online registry for North American individuals with ASD and their families. The sample included self-report (SR) data from 255 adults with ASD aged 18-71 years (M=38.5; SD=13.1), as well as an additional 143 adults with ASD aged 18-58 years (M=25.0; SD=8.2) who were represented by their legal guardians (legally-represented, or LR). Though 90% of the LR subsample received initial ASD diagnoses in childhood, the majority of self-reporting adults (73%) was diagnosed in adulthood, and thus this subsample likely represents more mildly affected adults who are rarely represented in research due to minimal clinical contact. Additionally, 64% of the SR group was female.

Results: Within the SR subsample, 42% had a bachelor’s degree or more education, and 47% had paid employment with various degrees of support, though only 25% held full-time jobs. Twenty percent lived alone. Of the LR group, 75% had achieved a high school degree or less; 22% held paid employment, though most for 1-9 hours per week. The most common physical health problems in both subsamples involved sleep, gastrointestinal problems, and allergies; high rates of anxiety, depressive, and attention deficit hyperactivity disorders were endorsed in both subsamples. The majority of participants were taking medication for ASD or co-occurring conditions, and 48% of the SR group received individual therapy. Participants placed greatest priority for future research on societal understanding and acceptance; mental and emotional health; and life, social, and vocational skills training.

Conclusions: Across self-reporting and legally-represented participants, both descriptive outcomes and rated priorities data converged to indicate that more adult research focus and support is needed in the areas of life skills, co-occurring mental and emotional health conditions, treatments, and vocational and educational opportunities.  Priority was also placed on improving public services, health care access, and above all, public acceptance of adults with ASD. Ideally studies of this kind will result in greater opportunities for lifespan research. Such initiatives should incorporate information on the current needs, problems, and priorities of adults with ASD and their families in order to maximize impact on the next several age cohorts of adults with ASD.