Amy S.F. Lutz is an American historian of medicine at the University of Pennsylvania. Since 2018 she has been the vice-president of the National Council on Severe Autism (NCSA) and founding member. She writes about autism topics, often using her son Jonah as an example of life with high support needs. Lutz is the author of three books, Chasing the Intact Mind (2023), 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 publishes in various publications, The Atlantic, Psychology Today, Washington Post, Slate and others.
Lutz received her master's degree in 1997 from Indiana University Bloomington in fiction writing, a career path she pursued for years before giving it up, saying "[I]t just seemed a little self-indulgent. There was really nothing at stake. Nobody's lives were really impacted by what was unfolding ... as opposed to the really consequential things I was struggling with in my own life, raising a child with severe autism." She entered the PhD program at the University of Pennsylvania already a published author of Each Day I Like It Better. Her advisor there was Beth Linker.[1] In 2022 she received her PhD from the University of Pennsylvania in the history and sociology of science. As of 2023 Lutz teaches "bioethics and the history of medicine."[2]
This idea of the independent autonomous person that at the core of a liberal democracy like ours is kind of a mess. ... That’s what makes us human: is that we are all kind of interdependent. There isn’t anybody who doesn’t need some kind of support, and so we shouldn’t really judge people for the types of support that they need.[1]
Severe autism advocate
Much of Lutz's research and writing is critical of the theory of an "intact mind" within the autism community. That is the idea that autistic people have "a typical or superior intelligence ... [and] severe cognitive impairment" does not exist, but that there is just a part of the brain that is inaccessible. Thus, with the right treatment there is hope that they will live independently, communicate and function normally in society. Parents are not the only ones pushing the theory that an intact mind resides inside their child if only the right combination of therapy is tried. According to Lutz, the neurodiversity community pushing the idea that autism is "an identity, not a disorder" leaves people like Jonah who are severely autistic and their families out of the discussion.[2]
Journalist Judith Newman, when reviewing Lutz's 2020 We Walk book, said about the neurodiversity community: "And when it comes to autism, the neurodiversity movement has a message for you: Autism is merely an alternative way of seeing the world, and don't you dare say otherwise." Newman writes that this community does not want to acknowledge severely autistic people like Jonah. They prefer to blame parents and society, arguing that "autism isn't a disease at all, but rather a different way of seeing the world." Newman and Lutz talked about the phenomenon of "inspiration porn", such as viral videos of a cheerleader taking an autistic teen to the prom. Newman said that Lutz does not see these videos as pity, as Newman does, but about kindness, "which is something that should be applauded always."[3]
Pursuing miracle cures and treatments lead some to be vulnerable to pseudoscience like facilitated communication, which Lutz states is like using a Ouija board. "Nothing is more predicated on the intact mind than facilitated communication because the whole enterprise hinges on this idea that there is a normal or even genius-level intellect trapped inside."[2]
Lutz writes about Jonah's treatments, as well as case studies of other severely autistic people, which are included in her 2014 book Each Day I Like It Better. In Jonah's case, by the time he was ten, he had attacked family and helpers, and he was violent not only to others but himself. He had been treated with applied behavior analysis (ABA) and medications, but with limited effect. As he aged and became larger and closer to puberty (which would make him more difficult to manage) the family turned to electroconvulsive therapy (ECT), previously known as electroshock treatment. Initially, ECT was needed three times a week, but over time Jonah was weaned from ECT to where he is stabilized at three treatments a month. After treatment he was back to school and family trips and "Jonah had virtually no outbursts and much improved mood." In an interview with Stuart Vyse in 2025, Lutz states that now at the age of twenty-six, Jonah is "doing very well ... he is happy and thriving". Lutz believes that "ECT provided life-changing degrees of improvement."[4]
Publications
As of December 2025, Scopus lists 11 publications by Lutz, which have been cited 124 times and a h-index of 5.[5]
Books
Chasing the Intact Mind: How the Severely Autistic and Intellectually Disabled Were Excluded from the Debates That Affect Them Most (2023). Oxford University Press. ISBN978-0197683842.
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