Why we're here

In Their Own Words

Stories from autistic families inspired this project

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.

Autistic mother of two

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.

Sue, Age 51, St. Paul, MN

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!

Mother of Autistic boy

Twin Cities, MN

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.

Robert Waltz

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