Amy S. F. Lutz, PhD, is a historian of medicine at the University of Pennsylvania. She has written about severe autism for many platforms, including The Atlantic, Slate, Spectrum, and Psychology Today, as well as in two previous books: We Walk: Life with Severe Autism (2020) and Each Day I Like It Better: Autism, ECT, and the Treatment of Our Most Impaired Children (2014). She is Vice President of the National Council on Severe Autism and lives outside Philadelphia with her husband and five children.
This is a fascinating book: It is forthright, it is honest, it is comprehensive, it is evidence-based. Importantly, this work tees up essential discussion of 'inclusion,' and how often it too relies on false hope, and distracts from our urgent need as a society to face the demands of guardianships and life-time supports we should be building for our autism community. * Bryna Siegel, PhD, Founder & Executive Director, Autism Center of Northern California; Professor, Child & Adolescent Psychiatry, University of California (Ret.) * Reading this brave, well-researched book I felt myself making a mental list of all the people to whom I'd recommend it. Lutz shows us the perilous seduction of the 'intact mind,' moving us through historic landmarks to the contested landscape in which we find ourselves today. With clarity of style and argument she shows how rhetoric transforms into policy, harming the very people those policies are meant to help. Her approach is one of deep empathy and understanding for those with severe autism, and their caregivers. * Deborah R. Barnbaum, PhD, author of The Ethics of Autism: Among Them but Not of Them and Professor of Philosophy, Kent State University * Amy Lutz bravely tackles the myth of the intact mind that has become so prevalent in modern autism dialogue. Lutz acknowledges that the intact mind mantra provides families critical 'high octane hope,' but also poignantly emphasizes the real-life consequences of blind adherence to dogma in terms of vastly reduced critical life opportunities for some of the most vulnerable individuals along the autism spectrum. A must-read for anyone truly committed to seeing all the faces of autism and optimizing care and long-term outcomes for everyone. * Lee Elizabeth Wachtel, MD, Professor of Psychiatry, Johns Hopkins School of Medicine *