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Nicolaidis, C., Raymaker, D. A., Ashkenazy, E., McDonald, K. E., Dern, S., Baggs, A. E. V., Kapp, S. K., Weiner, M., & Boisclair, W. C. (2015). “Respect the way I need to communicate with you”: Healthcare experiences of adults on the autism spectrum. Autism, 19(7), 842-831.
A study of 39 adults with ASD and 16 people who supported adults with ASD in healthcare settings. System-level, patient-level, and provider-level factors were identified as essential.
One provider said, “People attribute behaviors to the autism rather than looking for an illness first. Oh that’s her autism, she’s banging her head against the wall because that’s her autism. Nobody thinks, ‘Oh gosh! Maybe she has a migraine!’ ...They forget to realize that she can’t verbally express it so she uses behavior instead” (p. 828).
An individual with ASD indicated, “Usually when I demonstrate a large vocabulary or some fundamentals, my needs especially around communication are then ignored. My choice is then to pretend to be less intelligent and accept their infantilism, or to be confused, frustrated, and stressed out” (p. 828).
Raymaker, D. M., McDonald, K. E., Ashkenazy, E., Gerrity, M., Baggs, A. M., Kripke, C., Hourston, S., & Nicolaidis, C. (2016). Barriers to healthcare: Instrument development and comparison between autistic adults and adults with and without other disabilities. Autism, doi: 10.1177/1362361316661261.
209 individuals with ASD, 55 individuals with disabilities (not ASD), and 173 neurotypical adults completed the Barriers to Healthcare Checklist – Long Form. Results were as follows:
- Autistic participants selected different and greater barriers to healthcare, particularly in areas related to emotional regulation, patient-provider communication, sensory sensitivity, and healthcare navigation.
- Top barriers were fear or anxiety (35%), not being able to process information fast enough to participate in real-time discussions about healthcare (32%), concern about cost (30%), facilities causing sensory issues (30%), and difficulty communicating with providers (29%).
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