I spoke with Amanda Seigler, a children’s rights advocate and autistic activist about two studies at Yale which raise serious ethical issues about their use of human subjects.
Audio below. Also on iTunes/ podcast platforms.
Transcribed by Julie Ann Lee: Transcript_Seigler_Pt1_Noncompliant
One study frightened autistic toddlers (and a non-diagnosed control group) in various ways, such as putting them in a room with mechanical spiders and surprising them with grotesque masks to see how afraid autistic toddlers get in comparison to likely non-autistic toddlers—a textbook example of how not to do research.
Read Emily Willingham’s response to the study
Sign the petition to retract the study
The other study, which also enigmatically passed an ethics review, involved putting Nicotine patches on autistic people with violent meltdowns to see if the nicotine would randomly stop them from being aggressive, even though there are already evidence-based approaches to de-escalation in these circumstances.
Amanda and I discussed how it is that research like this gets funded at universities and what can be done to protect vulnerable people by preventing this type of research from being approved.
Listen to Part 2 of the interview here.