‘What makes us human’: Amy Lutz on autism and community

Amy Lutz is a Ph.D. candidate in the History and Sociology of Science Department in the School of Arts & Sciences. A writer who earned her bachelor’s in English and psychology from Penn and a master’s in fiction writing and literature from Indiana University, Lutz is also the mother of five children. These three identities—scholar, writer, mother—coalesce in Lutz’s second book, “We Walk: Life with Severe Autism.”

Amy Lutz seated with her husband and children in nature. — From left to right, top row: Erika Lutz, Amy Lutz, Andrew Lutz, Aaron Lutz. Bottom row: Hilary Lutz, Jonah Lutz, Gretchen Lutz. (Image: Courtesy Amy Lutz)

The other half of the “we” in this book is Lutz’s son Jonah, 21, her eldest child who loves pretzels and rollercoasters, walking instead of running, Sesame Street, and Costco samples. Lutz’s essays dart from present day to Jonah’s early childhood, exploring the meaning of faith for someone who doesn’t understand the concept of God and the meaning of community when it shuns the vulnerable. All of her essays center around fundamental questions: What kind of society do we want to build and dwell in? What does it mean to care for another? What does it mean to be human?

Lutz is currently in her fourth year of doctoral studies, with Beth Linker, the Samuel H. Preston Endowed Term Associate Professor, as an advisor. Lutz was a rare applicant, Linker says. Lutz came to Penn as a published author, and her focus did not waver from the start of her first class to the start of her dissertation. “As someone who has been doing disability studies for quite some time, I found her writing provocative,” says Linker. “This was a perspective that has not been talked about.”

Lutz is a parent-advocate for children and adults with severe intellectual disabilities. As the disability-movement pendulum has swung towards self-advocacy, it has left in its wake those who are unable to self-advocate, Linker says. The field of disability studies shows that the latter part of the 20th century was about dismantling institutions, many of which were harmful to the people they were designed to serve. Yet the need for services remains, and in many cases this responsibility has been either forced back onto individual families and caregivers or onto prisons, which house a disproportional number of people with intellectual disabilities and psychiatric disorders, Linker says.

In her book, she pushes severe autism from the shadows into the public square, asking, “What about Jonah? What does a fulfilling life look like for an adult with severe autism? How can society care for this population?”

“To me, as someone interested in fostering civic debate, I was excited to get her into the program, so her voice could be heard in academic circles,” Linker says. “When there’s a touchy subject, that’s precisely when we need to have really good scholarship to promote dialogue.”

Penn Today spoke with Lutz about her new career, tribalism, and what it means to be human.

‘We Walk’ is part essay collection, part memoir, part philosophical reflection. How did you come up with that format?

This combination was also the one I used with in my first book in 2014, and that book was on the treatment of dangerous behaviors in autism. It was about our journey to control Jonah’s aggressive and self-injurious behaviors. I interviewed other families, and I also did a lot of research into electroconvulsive therapy, which was the treatment modality that ended up being successful for us.

I’m just really drawn to the combination of philosophy and personal essay. I’m acknowledging my perspective and investment in my work. I’m not going to hide the fact that I am a parent of a severely autistic child, or man now. That really informs my research. So, I want that to be very transparent. I’m also very interested in what other people in other disciplines have to say about these issues, so in my new book I turned to not just the history of medicine but also bioethics and sociology and psychology because all of these disciplines approach these questions in very different ways. I was interested to learn as much as I could from the way other scholars have approached these questions.

What drew you back to graduate school and a shift away from fiction writing?

That was a long journey. I gave up on fiction writing probably at least a decade ago. It just seemed a little self-indulgent. There was really nothing at stake. Nobody’s lives were really impacted by what was unfolding in the fiction I was writing and reading, as opposed to the really consequential things I was struggling with in my own life, raising a child with severe autism. I started writing exclusively about issues relating to autism, and I did that for several years. I wrote my first book before I even thought about going back to school. Although I did a lot of research, it was really self-guided.

When I started to move into areas of advocacy about the services that are available to adults with autism and other developmental disabilities and how that particular population fits into the larger disability rights framework that has become ascendant over the years, I was really curious about how did we get here? How did we get to where we are now, where it’s really difficult to talk about disability in any way that isn’t about autonomy and maximizing independent living? This model doesn’t fit with the issues that we face with my son.

You can’t get around any conversation about disability without running into the social model of disability, which says that individuals are not disabled so much as the environments around them are disabled. And that makes a lot of sense when you think about someone in a wheelchair or someone with a sensory disability like blindness. Because certainly someone in a wheelchair is going to be much more disabled in a community with no curb cuts or elevators, but for Jonah and for other individuals who have significant cognitive impairments the social model of disability is not as helpful. I was really interested in studying how we got to this place.

The history of medicine was a natural fit because that’s what I study, the history of autism as a diagnosis from the 1940s when it was first conceptualized by Leo Kanner to the present. The interdisciplinarity of the department really spoke to me because it allowed me to do what I really love, which is to put different discourses and conversations with one another. That has been extraordinarily productive for me.

You address the role of society in the book. How might society envision a broader definition of community to include Jonah and others who might be considered different?

I think the question of what kind of society you want to build is the key question that runs through a lot of these essays and is what I wrestle with all the time because that in-group/out-group mentality is so strong in us. Expanding that circle to include people who are different, people who need support, who may not be able to ask for it for themselves, to include families who might feel really isolated because their kids can be disruptive in the community or can’t be safely taken out in the community, is so important.

How do we do it? I do think that exposure is critical. A lot of these questions are drawn from an essay, which started as a small piece in Slate, called, ‘Where Should Special Needs Kids Be Special?’ People felt really strongly about whether or not it was OK for me to bring Jonah into a restaurant. A lot of people made supportive comments, but there were lots of people, unfortunately, who thought that that Jonah shouldn’t be eating even in a family restaurant if it might disturb their meal.

I have noticed that I get a lot more positive comments now when I’m out with Jonah, even if he’s engaging in some behavior that I’m not happy about. We were at an outdoor restaurant over the summer, and Jonah was just agitated, kind of banging on the table and biting his hand and crying. Someone who works in the restaurant, who knows us, was incredibly supportive. She came over and said, ‘Don’t worry about it. What can I bring him?’ And then a stranger walking by stopped and told me, ‘Let him cry. It’s fine. Don’t worry.’ That’s when I almost lost it. I can keep my cool if people are giving me dirty looks and I can be all mama bear if someone suggests anything inappropriate about Jonah or makes us feel like he is not welcome anywhere, but as soon as someone extends a kind act, that’s when I kind of fall apart a little bit.

I didn’t used to get those kinds of supportive comments. I think people are increasingly used to seeing folks like Jonah out and about because there are a lot more children with autism than there used to be, and they’re growing up. There was a big increase in autism around the time that Jonah was born, and families like mine are not staying home. Our kids want to go to restaurants, they want to go to the pool, they want to go to the beach.

Pre-COVID, my husband took Jonah to Costco or BJ’s every weekend. A couple of times, I’ve gone with my husband without Jonah, and every single time, someone asks, ‘Where’s Jonah?’ They’re used to seeing him, and they really appreciate just how happy he is to be there, and they’re learning more about this population. If you don’t know someone with severe autism or other intellectual or developmental disabilities, you probably don’t really have a good idea of what that might look like. So, that exposure is really important.

How do you hope the world will see your son?

It’s twofold. First, I want the world to see the Jonah that I see: an incredibly valuable member of our family and the greater community. Just plain and simple. He’s someone who cares deeply about the people who are important in his life and the things that he likes to do. I want people to become invested in helping him achieve those goals, his flourishing. I really want people to care about Jonah and all the intellectually disabled people like him, who can’t necessarily articulate what it means for them to flourish—to help them and care enough to spend some time with them to figure it out.

But on the other hand, I also do not want them to be in denial about his significant disabilities. I do think that a lot of disability discourse today proposes that all anyone with a disability needs to thrive is their own apartment and a competitive minimum wage job. Myself, other parents, and providers who work with kids and adults with significant intellectual and developmental disabilities, we kind of raise our hands and have been jumping around, saying, ‘But our kids can never live alone. Our kids will never be able to hold competitive, integrated employment. What are the options for our kids?’

In the book, you discuss what it means to be human. How can something so fundamental as personhood be reframed?

To me, the obvious thing seems to be to just get rid of this category of ‘person,’ and recognize that we’re all human, whether we are newborns or elderly people with dementia or people with intellectual disabilities. We deserve to be welcomed into the human community and supported to whatever degree we need because one thing I do love is this idea that we are all dependent at some point in our lives. We were all completely dependent when we were babies, and we are likely to be completely dependent at the end of our lives or during periods of illness. And some people, like Jonah, will be profoundly dependent their whole lives.

This idea of the independent autonomous person that at the core of a liberal democracy like ours is kind of a mess. It’s very gendered, besides being very ableist, and it’s very white. The liberal subject is imagined as this white, healthy, heterosexual male who doesn’t need any help with anything, and that really isn’t a subject that exists in real life. 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.