I don't seek healthcare I could really use, even though I have insurance, because I know that seeking non-emergent health care will probably ultimately do more harm than good. This is because practitioners don't understand intersections of autism and healthcare.

Twin Cities, MN

It’s been two years since my diagnosis and it’s painfully obvious to me that pediatricians are the only doctors who know anything about ASD. I wish my doctors were at least as knowledgeable about ASD as pediatricians, and as I’ve taught myself how to be. The number of adults being diagnosed with ASD has risen exponentially and is going to continue to rise as medicine “catches up” with how pervasive this disorder is in adults. My community is seriously lacking in support and services for ASD adults and their families.

75% of survey respondents (n=440) felt that healthcare professionals ‘rarely’ or ‘never’ understand autism and how it affects someone’s physical and mental health.

… last time I had to attend hospital for a emergency op they wouldn’t take my needs into consideration and I refused to stay and went untreated

Autistic self-advocate

My best doctor's have always been the ones who take time to listen. Those that rattle on can be very difficult.

Blogger, and Autistic self-advocate

It’s been difficult to go to the doctor since it’s hard for me to explain things to them.

My then 2-year old needed a breathing treatment. The Respiratory Therapist came towards him with the mask. The more my son would scream the more and louder the RT would talk. I had to finally tell him to STOP TALKING and rock and sing my son to calm him. Once he was calm I was able to give him the treatment. FEWER, not more words!

Twin Cities, MN

Even when doctors understand disabilities, the front desk staff may not understand.

Just because I'm on the autism spectrum doesn't mean I have no agency over my conditions

I think it's extremely important for doctors to understand the body awareness and speech issues in autism & be able to recognize.

Blogger, and Autistic self-advocate

I need a doctor to know about having a disability.

Because of my emotional peculiarities, I don't defend myself. When attacked or rejected, I either retreat or I go into a funk. This makes it difficult to get proper health care. One time I felt very weak and unsteady. After finally getting access to health insurance, I was able to go to a doctor. He ran a few tests and found nothing. And therefore concluded that there was nothing wrong with me. Well, there WAS something wrong. I should have persisted and tried to get the doctor to learn more. But I could not defend myself; the doctor wasn't ordering any more tests, or making any more suggestions, so I retreated and stayed sick.

Fortunately, I now have a better doctor who listens more, but I *still* experience health problems that the doctors cannot find.  Why? I do not know. But I do know that many autistics have unusual sensations -- sensory sensitivities, abnormal pain responses, etc. I wonder if when I experience a particular condition, I experience it differently than most.