Improving Medical Experiences for Autistic Patients
What's the study about?
This is a survey-based research study about the experiences of autistic patients in healthcare settings. Our objective is to have the autism community guide healthcare systems in restructuring these experiences. We explore pain points, popularity and effectiveness of pre-existing interventions, as well as communication styles that work best for these patients. This will give medical professionals and healthcare administrators guidelines with which to structure future change.
Who can participate?
Anyone over age 18 who is autistic OR has accompanied an autistic person to the doctor
What will participants be doing?
Participants will complete an anonymous 10-minute online survey about their experiences in healthcare settings.
Why is this important?
Previous research shows that life expectancy for people with ASD is approximately 20 years shorter than those without, and this is largely driven by comorbidities and preventable deaths. As it stands, there are few accommodations made for these patients, and this impacts the way they interact with and receive healthcare. 80% of autistic adults report difficulty visiting a GP (compared to 37% non-autistic adults) and barriers have been identified: deciding whether symptoms warranted a visit (72%), booking appointments by telephone (62%), not feeling understood (56%), communicating with the doctor (53%), and the waiting-room environment (51%) (https://pubmed.ncbi.nlm.nih.gov/35193921/). It is also known that these barriers lead to untreated health conditions, missed appointments, increased ED visits, and late presentations of treatable conditions (some of which are life-threatening) (https://pubmed.ncbi.nlm.nih.gov/35193921/, https://jamanetwork.com/journals/jama/fullarticle/2800182?utm_source=openevidence&utm_medium=referral).
Thus it is vital that the autism community has an opportunity to express what happens during these encounters and pave the way toward solutions.