Blog: When Patients Give Up on Healthcare

Mel Houser, M.D., Executive Director, All Brains Belong VT (10/10/2023)

Look anywhere on social media today and one trend is clear: Autistic adults have largely given up on healthcare.

Why? Because they don’t get their needs met… AND the negative experiences are too significant, including the quantity of “spoons” required to navigate The System. The risk/benefit ratio leans in favor of healthcare avoidance. At best, they leave a healthcare encounter feeling misunderstood. At worst, they leave feeling dismissed, invalidated, and traumatized.

And here’s the problem. Not only do 67-69% of Autistic adults have untreated health conditions¹ but this directly lowers our life expectancy. The life expectancy for an Autistic adult is 36-54 years.^2-3 Not dying from autism. Dying from premature cardiovascular disease and suicide.^3-4

When I do trainings for healthcare providers, I am often asked what people can “do” to be more neuroinclusive. While I appreciate the sentiment behind question, I think neuroinclusivity is more of a mindset than a set of techniques or practices. it starts with the way one sees the world. (We’re pretty good at helping professionals work on that.)

And in the meantime, what can patients do?

• Check out the “Everything is Connected to Everything: Improving the Healthcare of Autistic & ADHD Adults” project – this is a free collection of educational resources for patients and clinicians to better understand the constellation of intertwined medical conditions commonly experienced by this population.
• Join us for Brain Club – our free weekly virtual community education program. This is an opportunity to learn about one’s access needs through connecting with a community of people who “get it.”
• And, last but not least, check out the video above for advice from one of our community members.

P.S. If you’d like to support our work to improve the health of neurodivergent people, please consider a tax-deductible gift of any size.