Who speaks for who in autism with Amy Lutz

Earlier this year a new book, ‘Upward Bound’, garnered a lot of attention. It’s authorship was attributed to non-speaking autistic man Woody Brown. It was covered in the Guardian, the New York Times and the Today Show. It’s part of a long tradition where non-speaking autistic people are credited with the authorship of books and articles that they spell out, letter by letter, with the support of a facilitator.But is it too good to be true? This is a hotly debated area, with some claiming it can be abusive, while others say it’s the key to unlocking a person’s inner life.Amy Lutz is someone for whom this has personal resonance. She has an adult son, Jonah, who she describes as profoundly autistic. Her concerns about how he and people like him are being spoken over led her to do a PhD which became her book ‘Chasing the Intact Mind- How The Severely Autistic and Intellectually Disabled Were Excluded from the Debates That Affect Them Most’.In our discussion, Amy talks about her experience as a parent, her concerns about the potential harms of facilitated communication, and the contradictions of the neurodiversity movement. She also discusses the limitations of the social model of disability when applied to those with severe cognitive disabilities.Amy sheds light on a fascinating and highly contested area of autism from both a personal and academic perspective. This is a conversation you won’t want to miss. This is a public episode. If you would like to discuss this with other subscribers or get access to bonus episodes, visit neurosense.substack.com