Evaluating Autistic Adult Experiences in Healthcare Reading Guide

Nicolaidis, C., Raymaker, D. M., McDonald, K. E., Baggs, W. A. E. V., Dern, S., Kapp, S. K., Weiner, 

M., Boisclair, C. & Ashkenazy, E. (2015). Respect the way I need to communicate with

you: Healthcare experiences of adults on the autism spectrum, Autism, 19(7), 824-831.

This is a study evaluating the experiences of adults with ASD accessing health care and interacting with healthcare professionals. It included data from 39 adults with ASD and 16 people who had experience supporting adults with ASD in healthcare settings.

1. How did the researchers gather information for this study?      

• They 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.

2. What are three autism-related factors identified by the researchers that were reported to affect healthcare?

• Verbal communication skills

• Sensory sensitivities 

• Body awareness

• Slow processing speed

• Atypical non-verbal communication

• Challenges with organization 

3. What three provider-level factors were reported to affect healthcare access or usage for adults with ASD?

• Inadequate training of healthcare providers about autism in adults

• Lack of adequate transition services

• Decreased use of medical and mental health services as autistic youth transition out of high school

4. What three system-level factors were reported to affect healthcare access or usage for adults with ASD?

• Significantly greater unmet healthcare needs

• Greater emergency department use

• Lower healthcare self-efficacy

• Lower satisfaction with patient-provider communication

5. What is your takeaway message from this study?      

• There is a lot of improvement needed in healthcare settings for autistic adults.