Azeen Ghorayshi

You know, that's a really easy way to get data on large groups of people is to have them fill out online surveys.

They also can't go sit in a brain scan machine that is loudly humming for an hour.

And at the same time, the research priorities around autistic people's lives have moved away from the sort of questions that are seeking a cure or a treatment for autism and more towards the sorts of questions and concerns that are of a lot more importance to people on the milder end of the spectrum.

So questions around mental health or employment.

And, you know, the parents of the severely autistic kids who I spoke with said that

those concerns do not relate in any way to their kids' lives.

You know, their kids are struggling with things like eating or learning how to talk.

Right.

For a lot of them, it won't be.

So this group being lumped together has led to a lot of disagreements over how to approach these problems.

No, I think that is definitely a dynamic that is playing out.

I think the dividing line in the community is a little more complicated than that, too, in that it's really these parents of the kids with severe autism who are now at odds with activists

who are self-advocates, who are autistic people themselves, who say, you know, we have a shared experience as members of the autistic community that you can't understand.

And I think that is a really difficult dynamic that has played out in this community is who gets to speak for the community when there are such broad needs and the people on the most severe end of the spectrum often cannot speak for themselves.

Kathy, was there sort of a moment in your own practice where you realized there might have been a downside to this expansion?

Like this is having some negative consequences that we didn't prepare ourselves for?

Yes, I think so.

And Kathy has this experience as well on a committee where they are discussing housing for autistic people.

And she is...

On the committee with an autistic self-advocate who is really pushing against the idea of group homes, arguing that basically it's taking us back to the dark days of psychiatric institutionalization that we've really moved away from.