What it’s like to be a Black autism researcher?

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Autism research is an overwhelmingly white field — one in which Black researchers say they experience both overt and covert racism.

This summer took an especially heavy toll on many scientists of color as protests erupted in response to the deaths of George Floyd, Ahmaud Arbery, Breonna Taylor, Rayshard Brooks, Jacob Blake, Daniel Prude, and other victims of police violence.

Spectrum spoke with four Black women who are autism researchers — Mary Agyapong, Desi Jones, Cliona Kelly and Termara Parker — about their experiences leading up to and during this past summer, and what they hope will happen next.

You can read the transcript for this episode here

Cliona Kelly is a PhD student who studies eye gaze and joint attention at Aston University in Birmingham, England. She says most electroencephalogram, or EEG, caps, which are used to detect electrical activity in the brain, aren’t made for Black hair textures, and so the EEG electrodes don’t make proper scalp contact.

It’s often up to Black researchers to bring up and solve these problems. Arnelle Etienne is a Black woman who graduated with a degree in Technology and Humanistic Studies from Carnegie Mellon University in Pittsburgh, Pennsylvania. As a student, she invented new EEG electrodes that work with Black hair. Her proof-of-concept design was published on the pre-print server BioRxiv in February this year.

But Desi Jones says speaking up about a lack of diversity can lead to harassment. She went to the INSAR annual meeting last year and noticed just how white it was. She tweeted, “Autism research has a huge diversity problem. INSAR offers workshops and awards to support diversity, but a woman of color on a panel or oral presentation? Almost unheard of. We need to do better, and yes,I am saying this as someone who is impacted by this.”

Desi Jones:
I ended up getting harassed online by white supremacists, and I'd like to clarify that as far as I know, none of these people were associated with INSAR or the autism research community. They just found my tweet online I guess, but theywere really nasty and saying hurtful things about me. They posted my photo and I just remember this one comment, this woman was like, “She's ugly inside and out.” And I was like, what do I do about this? And this...the really tough part about that moment was that I didn't really have a community that I could go to for support or advice.