Dr. Amy Lutz, a senior lecturer in the Department of History and Sociology of Science, at the University of Pennsylvania, transitioned from a career in English literature and fiction writing to focus on the challenges of severe autism after her son, Jonah, was diagnosed. Motivated by a desire to understand the complexities of autism, she delved into the fractured landscape of the autism community, noting a significant divide between parents of those with severe autism and advocates for those with milder forms.
Dr. Lutz has written extensively on the subject, including her 2020 book We Walk: Life with Severe Autism and in 2023 she published Chasing the Intact Mind: How the Severely Autistic and Intellectually Disabled Were Excluded from the Debates that Affect Them Most. Through her work, she aims to address the often-overlooked needs of individuals with severe autism, advocating for more inclusive support systems. She challenges the “rosy narrative” of autism in the public sphere, which tends to emphasize neurodiverse individuals who can advocate for themselves, and instead focuses on the many who, like her son, cannot. Dr. Lutz is also the Vice President of the Board of Directors for the National Council on Severe Autism.
Can you tell us a little about your son Jonah and his journey?
Jonah is the oldest of my five children. He is 25 and profoundly autistic. He has some spoken language, using it to communicate his wants and dislikes, and often scripts from Sesame Street. He can’t understand abstract concepts or answer questions that start with how or why. He struggled with aggressive and self-injurious behaviors, and when he was nine, he spent almost a year inpatient at Kennedy Krieger Institute in Baltimore.
Now, he’s stable, thanks to a strict medical regimen, which helped stop the aggressive behaviors. However, he still bites his hand or hits his head when agitated. The good news is, he’s not aggressive toward others, which is a relief since he’s nearly six feet tall and 200 pounds. He requires round-the-clock care and will for his entire life.
How was Jonah diagnosed?
There were early signs, but he was our first child, so we didn’t know what to expect. Around 15-18 months, I saw a friend’s child follow a one-step direction, and I realized Jonah wasn’t doing that. However, Jonah was a very social, engaged baby, and physically advanced—he was the first to crawl and walk in his playgroup. We didn’t worry until he turned two and wasn’t talking. At his checkup, the pediatrician suggested we start with a hearing test. I told my husband, “Jonah might be deaf, maybe that’s why he’s not talking.” Jonah was watching a Sesame Street video and Andy just walked over and turned off the volume and Jonah took his hand and pushed it up towards the controls in a way that’s very typical autistic behavior to use another person as a tool instead of pointing, but we didn’t recognize what that meant except that it meant that he wasn’t deaf. After a long wait, when Jonah was just over two and a half, we saw a developmental pediatrician and received the autism diagnosis.
After Jonah’s diagnosis, what was the educational process like for him?
Jonah first attended a preschool for kids with language delays, then at three, he moved to a full-day preschool through our county’s early intervention program. After that, he spent a year in a mainstreamed kindergarten class in public school. I was hopeful because Jonah was hyperlexic and could read and write without being taught. But instead, he broke a teacher’s nose, and by the end of the year, they couldn’t manage his behaviors. The aggressive behavior was a major issue for years. After that, he was approved for private placements for the rest of his school years. We were fortunate because, at the time, the school district came to us offering private school options and worked closely with us. I’m grateful for their support.
At first, we hoped Jonah would grow up to be a socially inept but brilliant computer science geek. We didn’t realize that his hyperlexia was just the ability to decode language without comprehension. It’s hard to let go of the hope that your child will be “The Good Doctor” or a genius, especially for parents of autistic kids, but with Jonah’s severe behavior, we eventually saw that medication was needed. The private school suggested it after two years, but I felt they were giving up on him. After being kicked out of an autism school, we applied to Kennedy Krieger. While we waited for admission, the school district helped by sending someone to work with him. At that point, our focus was solely on managing his aggression and self-injurious behavior, with academics far from our concerns.
Now that Jonah’s behavior has stabilized, what are his goals and what does his daily life look like?
By age 12, it became clear that Jonah had a significant intellectual disability. Now, at 25, it’s obvious that his interests, like Sesame Street, are more typical of preschool-aged children. While this means he won’t go to MIT, it doesn’t diminish his value. Some parents struggle with accepting their child’s cognitive limitations, but it’s important to meet Jonah where he is. His life is restricted, and his cognitive impairment means he won’t experience things like meaningful romantic relationships, a career, or travel. It’s a tragedy, but we must support him for who he is, not who we hoped he could be. Jonah attends an amazing program where he’s been for 11 years, since secondary school. It’s an ABA and community-based program. His goals include learning life skills like microwaving food, doing laundry, and stopping at curbs when out in the community. He also volunteers at a fire station and gets a lot of exercise, which helps manage his weight. These goals have been consistent for a long time.
Your experience as a parent led you to become an autism advocate as well as a shift in your professional focus.
I have a background in writing and earned my MFA in creative writing, aiming to write the next great American novel. But as Jonah’s impairments became more obvious, I noticed a disconnect between the public discourse on autism and our home experience. While autism was being framed as an identity, at home, Jonah’s autism was clearly disabling. Early on, the Autistic Self-Advocacy Network criticized Autism Speaks for its “I am autism” campaign, and I felt the reality of autism in our house was not being acknowledged. So, I began writing about our experience, focusing on the severe end of the spectrum.
I’ve written three books and numerous articles, advocating for people like Jonah to be included in public discussions about autism and policies on supports and services. This led me to want to understand how we got here, as no other disability community seemed as divided. So, I decided to pursue a PhD in history and sociology of science, focusing on the history and ethics of intellectual and developmental disability policy. I defended my dissertation in May 2022, and my book, Chasing the Intact Mind, was based on my research. Having a PhD has given me more credibility to engage in these debates, as policymakers are more receptive to hearing from Dr. Lutz than Amy Lutz, mom of Jonah. It shouldn’t matter, but it does.
Can you describe the main ideas you were researching for your dissertation that became your book, Chasing the Intact Mind?
The first half of the book explores the idea of the “intact mind,” the belief that a normal or genius intellect is hidden in people with autism. This idea emerged from mid-20th century psychoanalytic theory, influenced by how autism presents and parents’ hope that their children are cognitively intact. I trace how this belief developed, especially through parent memoirs, and how it persisted even as medical discourse shifted in the 1980s to view autism as a biological, incurable disorder. Despite this, many parents continue to believe in the potential for recovery through interventions like ABA, diets, or even unconventional methods like wild horse rides.
In the second half, I examine how the intact mind assumption impacts policies affecting people like Jonah. For example, the push to eliminate 14 C, the subminimum wage for workers with disabilities in the United States, assumes everyone can hold a competitive job, which isn’t true for everyone, including my son. I also explore the erosion of guardianship rights and the belief that everyone can make decisions with proper support, which disregards the real needs of individuals like Jonah. Lastly, I discuss the resurgence of facilitated communication, despite its past disproof as a way to access the “intact mind,” which misrepresents the needs of those with significant impairments. My argument is that this “intact mind” assumption does a disservice to people who require intensive care and support.
How did the DSM’s (Diagnostic and Statistical Manual of Mental Disorders) removal of diagnoses like PDD-NOS and Aspergers impact individuals with the highest support needs?
The DSM change was a disaster. Most parents, providers, clinicians, and researchers agree that grouping everyone together has not been helpful. I’m glad to see the introduction of the “profound autism” category. In 2021, The Lancet Medical Journal published a paper calling for this term to describe individuals with autism, an IQ under 50, minimal language, and needing around-the-clock support. The CDC recently released prevalence figures, showing that nearly 27% of eight-year-olds meet the criteria for profound autism, indicating it’s a significant group. This highlights the need for disability service models that address the high needs of this population.
How can allies of those with profound autism and their families help in this discussion?
It’s important to stand firm and not be bullied into abandoning useful language like “profound,” “severe,” “challenging behavior,” and “treatment.” There’s a push to control the language used by researchers and clinicians, but we must continue using these terms. If we stop talking about people with severe or profound autism, they’ll be erased from the conversation.
Understand that ABA is everywhere, from telling my neurotypical son he can’t go to a game until his homework is done, to the visual steps on our shower door for Jonah. That’s ABA, and there’s nothing wrong with that. The idea that ABA is just drill-based training is outdated. It’s actually foundational to how neurotypical kids and adults learn.
Last, we need to bring the reality of profound autism into these discussions. It’s not pretty or what we’d choose, but sanitizing the challenges of profoundly autistic individuals does them a disservice. Many of the more “high-functioning” voices claim functioning is fluid, but my son will never be able to participate in these conversations or understand what’s being said. We can’t deny the biological reality of profound neurological impairments in some people with autism.
That’s why I write about Jonah and others like him. The incredible silver lining of a very harrowing journey has been meeting the people who were called to work with people like my son. Full disclosure, I am not that person. If I didn’t have a severely autistic son, I’d be doing something else for sure. But the people who choose this work are truly special.
To learn more about Dr. Lutz’s research, writing, and advocacy:
Visit her website, watch this podcast episode, and read this article about autism and community.
Learn more about the needs of the profound autism community, how you can help amplify their stories, and advocacy opportunities:
National Council on Severe Autism
Dr. Amy Lutz will be a featured presenter at our upcoming Pyramid FUNctional Conference 2025 on October 14th! Save the Date and stay tuned for more details coming soon.
Written by Rayna Bondy, MSW and Alexis Bondy, MS.Ed., BCBA
© Pyramid Educational Consultants, LLC. 2025