Azeen Ghorayshi

And she has this realization that...

She felt like the self-advocate did not understand that this is for people who have the most severe needs, who do need round-the-clock care, who cannot live independently.

And she talks about how that experience really made her worry about who gets to speak for the experience of autism, who gets to make choices for that community, who gets represented, who gets resources, has been made much more difficult by just how broad the range of experience contained in this diagnosis has now become.

Can you talk about the proposal of this category of profound autism, sort of when that came to be and then obviously your involvement in it too?

Yeah.

Kathy and a group of other researchers and clinicians and autism advocates have actually been, over the last several years, proposing that perhaps there needs to be a separate category for the people with the most severe disabilities.

So she, in 2021, is leading this thing called the Lancet Commission.

What this group of experts ends up proposing is a separate category that is called profound autism.

And the way they defined it is having minimal or no ability to speak or an IQ of less than 50 or both and requiring 24-hour access to a caregiver.

So it's really about recognizing that there is a part of this population with very severe needs and having a label so that that group of people can be identified.

First, this is not an actual diagnosis that has been proposed.

Profound autism is a label that has casually grown in use over the years.

I hear clinicians using it all the time.

The reason to have this label, I think, ultimately boils down to recognition.

So recognition that this is a group of individuals with really severe needs.

The round-the-clock care being right there as part of the definition, I think, tells you a lot.

And I think flowing out from that is the hope that this will be a group that will be able to get more in terms of the services that their families have really struggled to get for them over the years.

Yeah, I think that's certainly the hope, but I don't think we know.

And, you know, it's definitely not clear that this is going to be a magic solution that fixes these issues that Kathy and others have identified.

I asked her if she regretted in any way the sort of role that she played in expanding the diagnosis.