title: "Respect the way I need to communicate with you": Healthcare experiences of adults on the autism spectrum.
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.
authors.affiliation: Portland State University, USA Oregon Health & Science University, USA Academic Autistic Spectrum Partnership in Research and Education, USA Nicol22@pdx.edu.
authors.forename: Christina
authors.initials: C
authors.lastname: Nicolaidis
authors.affiliation: Portland State University, USA Academic Autistic Spectrum Partnership in Research and Education, USA.
authors.forename: Dora M
authors.initials: DM
authors.lastname: Raymaker
authors.affiliation: Academic Autistic Spectrum Partnership in Research and Education, USA.
authors.forename: Elesia
authors.initials: E
authors.lastname: Ashkenazy
authors.affiliation: Academic Autistic Spectrum Partnership in Research and Education, USA Syracuse University, USA.
authors.forename: Katherine E
authors.initials: KE
authors.lastname: McDonald
authors.affiliation: Academic Autistic Spectrum Partnership in Research and Education, USA.
authors.forename: Sebastian
authors.initials: S
authors.lastname: Dern
authors.affiliation: Academic Autistic Spectrum Partnership in Research and Education, USA.
authors.forename: Amelia Ev
authors.initials: AE
authors.lastname: Baggs
authors.affiliation: Academic Autistic Spectrum Partnership in Research and Education, USA.
authors.forename: Steven K
authors.initials: SK
authors.lastname: Kapp
authors.affiliation: Academic Autistic Spectrum Partnership in Research and Education, USA Indiana University Center for Health Services and Outcomes Research and Regenstrief Institute, Inc., USA U.S. Department of Veterans Affairs, USA.
authors.forename: Michael
authors.initials: M
authors.lastname: Weiner
authors.affiliation: Academic Autistic Spectrum Partnership in Research and Education, USA.
authors.forename: W Cody
authors.initials: WC
authors.lastname: Boisclair
mesh_terms: D000328:Adult; D000368:Aged; D000067877:Autism Spectrum Disorder / Q000523:psychology* / Q000628:therapy; D002983:Clinical Competence; D003142:Communication; D055812:Community-Based Participatory Research; D005260:Female; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D008875:Middle Aged; D017060:Patient Satisfaction; D010817:Physician-Patient Relations; D036301:Qualitative Research; D058996:Quality Improvement; D055815:Young Adult
keywords: adults; autism spectrum disorders; community-based participatory research; health services; qualitative research