"I'm dealing with a health care system that doesn't get it": Barriers and facilitators to inclusive healthcare for autistic adults.
Kiley J McLean, Meghan Haas, Jamie Koenig and 4 others
PMID 38469707WHAT IT FOUND
Autistic adults described healthcare as a demanding social environment where short appointments, phone-based scheduling, and sensory-heavy settings blocked care.
They relied on online booking and support people to navigate systems. Providers often lacked training in adult autism, leading to misunderstandings of communication styles.
Key findings
01Participants identified sensory issues (lights, smells, noise) and executive functioning challenges as major barriers to attending appointments and advocating for themselves.
02Online scheduling and communication were critical facilitators, while phone calls and brief appointment times were significant obstacles.
03Most participants felt healthcare providers had limited training in adult autism, leading to misinterpretations of behaviors like lack of eye contact.
STILL TO COME
How it was doneWhat they foundWhat it means for PTsWhat it means for OTsWhat it means for SLPs
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What it does not show
Small, self-selected sample of 23 participants, likely biased toward those motivated to improve healthcare experiences. Participants were mostly educated, middle-to-high income, and geographically homogenous, limiting generalizability to autistic adults with lower socioeconomic status or different cultural backgrounds. Study did not include non-English speakers or those unable to participate in video interviews. Qualitative design identifies themes but cannot measure the frequency or impact of these barriers across the broader autistic population.
Declared interests
Funded by N.I.H., Extramural. No other conflicts of interest reported.
The easy way to misread this
Do not assume these barriers apply equally to all autistic adults. The sample was largely educated, English-speaking, and self-selected, so experiences of those with intellectual disability, lower income, or non-English speakers may differ significantly.