The third chapter of When Autistic Kids Grow Up, the new 5-part podcast series from Brady Huggett at The Transmitter, is out now. Chapter 3, “Would there be data?,” gets to the heart of why I began this work—and why I refused to look away.
Autistic adults are suffering—and dying—from chronic physical health conditions at higher rates than the general public. Chronic illness does not stay in one corner of a person’s life. It affects work. Relationships. Mental health. Independence. Safety. Everything.
When the NIH has funding policies that block review and funding for research on the treatment of physical health conditions in autistic adults, I am going to call it what it is: structural discrimination.
I am not going to soften my words to make authority more comfortable. I am not going to make discriminatory practices and policies sound more acceptable than they are. Federal agencies cannot be allowed to structurally discriminate against people with disabilities—including autistic adults—and then expect the people harmed by those policies to speak gently about it.
I was willing to risk my job, my reputation, and my relationships because lives were at stake. This was not about my career. It was not about my feelings. If this had been merely a difference of opinion, I never would have put a career with stellar performance reviews on the line.
But what I discovered was not treated with the urgency it deserved. Instead, I was rejected and betrayed by people, systems, and organizations that did not want to “bite the hand that feeds.” The NIH is the largest funder of physical health research in the world and provides the lion’s share of funding for universities and research institutes. That power makes accountability even more important—not less.
What happened was heartbreaking. But I would do it all over again to save autistic lives. Listen to Chapter 3 of When Autistic Kids Grow Up from The Transmitter—and ask why autistic adults’ physical health has been treated as optional for so long.
Spectrum for Life Research 