Member-only story

Who should actually speak for autistic people?

In short, it depends.

Noisy Skin Bag
8 min readApr 18, 2023
Photo by Volodymyr Hryshchenko on Unsplash

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If you’ve spent any length of time in the autism community, especially online, you will learn pretty quickly that there’s an ongoing war between autistic self-advocates and caregivers of autistic people raging almost any time the two groups interact with each other. There’s almost no peaceful interaction between these demographics despite considerable overlap between them. It’s as if someone were to throw two angry chihuahuas in a cardboard box.

Less directly as well, we also have a war between those who provide autism services and/or conduct autism research, but we much less frequently get to witness the authors of the latest studies surveying the parents of 10 young children about the internal experiences of autistic people or the BCBAs (Board Certified Behavior Analysts) who try to extinguish (i.e. suppress and eventually stop) hand flapping showing up on social media going to bat for their work. Autism Speaks, the organization that famously has prioritized caregiver and clinical voices over those of actual autistic people, had unsavory funding priorities when it came to their executives, and promoted eugenics, also recently decided, in a cowardly ploy to protect its reputation, to simply turn off all of

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Noisy Skin Bag
Noisy Skin Bag

Written by Noisy Skin Bag

I am formally diagnosed with autism, ADHD, and OCD, and have informal diagnoses of PDA and 2e. I share my experience navigating the disability landscape.

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