Characteristics associated with healthcare independence among autistic adults.
Executive-function challenges and visible repetitive behaviors each signal when autistic adults will need help managing healthcare tasks.
01Research in Context
What this study did
Masi et al. (2022) asked autistic adults and their caregivers about everyday healthcare tasks.
They used surveys to measure executive functioning, restricted and repetitive behaviors, and how well the adults handled doctor visits, insurance, and medication on their own.
The goal was to see which traits most often go with needing help in healthcare settings.
What they found
Adults who said they had trouble with planning, memory, and flexible thinking also reported the lowest healthcare independence.
Caregivers, however, pointed to high levels of repetitive behaviors as the main red flag for needing support.
Both views matter: self-reported executive problems and caregiver-reported repetitive behaviors each predicted more help needed.
How this fits with other research
Iversen et al. (2021) pooled data from almost 3,000 participants and found that poor executive skills and high repetitive behaviors tend to show up together.
Their meta-analysis supports Anne’s link: when executive skills slip, repetitive behaviors often rise, making solo healthcare tasks harder.
Karaca et al. (2026) focused only on adults with high-functioning autism and still saw moderate deficits in flexibility and planning.
Anne’s survey extends this work by showing these same deficits translate into real-world tasks like booking appointments and managing prescriptions.
Saunders et al. (2005) earlier showed that flexibility, working memory, and inhibition tied most tightly to repetitive symptoms.
Anne’s findings echo and broaden that list: they matter for healthcare independence too, not just symptom severity.
Why it matters
If you support autistic adults, screen both executive functioning and repetitive behaviors.
Use short checklists or interviews before teaching healthcare skills.
Target planning, memory aids, and flexibility drills first; they may free the client from needing a caregiver at every visit.
Also watch for spikes in repetitive behaviors under stress—those moments predict when extra support will be needed.
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02At a glance
03Original abstract
BACKGROUND: Healthcare independence refers to someone's ability to assume responsibility for their own health and complete tasks like taking medication as prescribed or scheduling healthcare appointments. Prior studies have shown that autistic people tend to need more support with healthcare tasks than people with other chronic conditions. We sought to identify modifiable and non-modifiable factors linked with healthcare independence among autistic adults. METHOD: We conducted a cross-sectional survey to examine how executive functioning skills, restrictive and repetitive behaviors, gender, education, and age were linked with healthcare independence among this population. Participants included: (a) autistic adults (n=19) who are their own legal guardian, who participated via self-report; and (b) family members of autistic adults with a legal guardian (n=11), who provided proxy-reports. RESULTS: Findings differed between self- and proxy-reports. Among autistic adults who self-reported, difficulties in executive functioning were strongly linked with less healthcare independence. Among proxy-reports, greater restrictive and repetitive behaviors were strongly linked with less healthcare independence. According to the proxy-reports, having not completed high school, being older during the healthcare transition, and being male were all independently linked with less healthcare independence. CONCLUSIONS: Interventions aimed at supporting executive functioning, providing opportunities to increase independence with healthcare tasks, and reducing the extent to which restrictive and repetitive behaviors interfere with daily activities may be viable options for supporting healthcare independence among autistic adults. Our findings are an important first step for future initiatives to better identify individuals who need additional care coordination, supports, or services to maximize healthcare independence.
Research in autism spectrum disorders, 2022 · doi:10.1016/j.acap.2014.03.008