"Respect the way I need to communicate with you": Healthcare experiences of adults on the autism spectrum.
Tiny office tweaks—written options, longer waits, supporter welcome—turn dread into trust for autistic adults.
01Research in Context
What this study did
Nicolaidis et al. (2015) talked with autistic adults about doctor visits.
They asked what went wrong and what helped.
The team recorded the interviews and grouped the answers into themes.
What they found
Adults said small changes make a big difference.
They want written instructions, longer wait-room time, and a support person.
They also want doctors to ask, "How do you like to talk today?" instead of guessing.
How this fits with other research
Mason et al. (2021) asked the same questions to a wider group and got the same answers.
Boudreau et al. (2015) looked at the youth side: only one in five teens gets a plan to move to adult care.
Together the three studies show the same fix works at every age: give clear info, keep the same provider, and let the patient choose how to talk.
Why it matters
You can add one line to your intake form: "Preferred way to communicate." Offer paper, tablet, or speech. Let the client bring a friend. These zero-cost steps cut no-shows and build trust. Start Monday.
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Join Free →Add a checkbox line to your intake form: "I like to get info by □ paper □ tablet □ talking □ other." Hand it out before the first visit.
02At a glance
03Original abstract
Our objective was to obtain an in-depth understanding of autistic adults' experiences with healthcare and their recommendations for improving care. Our academic-community partnership used a community-based participatory research approach to conduct semi-structured, open-ended interviews with 39 autistic adults and 16 people who had experience supporting autistic adults in healthcare settings. Participants identified patient-level, autism-related factors that impact healthcare interactions, including verbal communication skills, sensory sensitivities, challenges with body awareness, slow processing speed, atypical non-verbal communication, and challenges with organization. However, the success of healthcare interactions largely depended on the interplay between patient- and provider-level factors, as well as the larger context in which patients were receiving care. Provider-level factors included providers' knowledge about autism in adults, incorrect assumptions about individual patients, willingness to allow written communication, use of accessible language, openness to providing other accommodations, and skill in appropriately incorporating supporters. System-level factors included the availability of supporters, complexity of the healthcare system, accessibility of healthcare facilities, and stigma about autism. Further efforts are needed to empower patients, adequately train providers, increase the accessibility of the healthcare system, and decrease discrimination.
Autism : the international journal of research and practice, 2015 · doi:10.1177/1362361315576221