“Respect the way I need to communicate with you”: Healthcare experiences of adults on the autism spectrum

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 auti...

Full description

Saved in:

Bibliographic Details
Published in:	Autism : the international journal of research and practice Vol. 19; no. 7; pp. 824 - 831
Main Authors:	Nicolaidis, Christina, Raymaker, Dora M, Ashkenazy, Elesia, McDonald, Katherine E, Dern, Sebastian, Baggs, Amelia EV, Kapp, Steven K, Weiner, Michael, Boisclair, W Cody
Format:	Journal Article
Language:	English
Published:	London, England SAGE Publications 01-10-2015 SAGE PUBLICATIONS, INC
Subjects:	Access Access to Health Care Adult Adults Aged Allied Health Personnel Autism Autism Spectrum Disorder - psychology Autism Spectrum Disorder - therapy Barriers Clinical Competence Cognitive Processes Communication Communication Skills Communication Strategies Community based action research Community-Based Participatory Research Discrimination Experience Female Health care Health Services Human Body Humans Interaction Interpersonal Communication Interpersonal Relationship Interviews as Topic Knowledge Level Male Middle Aged Nonverbal Communication Openness Oregon Participatory Research Patient Satisfaction Patients Perceptual Impairments Pervasive Developmental Disorders Physician-Patient Relations Qualitative Research Quality Improvement Quality of care Semi Structured Interviews Sensory stimulation Social Bias Stigma Supporters Symptoms (Individual Disorders) Verbal communication skills Young Adult Oregon autism spectrum disorders qualitative research community-based participatory research health services adults
Online Access:	Get full text
Tags:	Add Tag No Tags, Be the first to tag this record!

Description
Summary:	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.
Bibliography:	ObjectType-Article-1 SourceType-Scholarly Journals-1 ObjectType-Feature-2 content type line 23
ISSN:	1362-3613 1461-7005
DOI:	10.1177/1362361315576221