Book Review: "Uniquely Human" by Barry M. Prizant

Uniquely Human: A Different Way of Seeing Autism by Barry M. Prizant, PhD

Barry Prizant saw a world that pathologized, shamed, and reduced autistic people to problem behaviors that the system was desperate to eradicate. He wrote this book in response, to share the rich and beautiful ways that autistic people express their humanity, and to offer compassionate, affirming strategies to elevate strengths, not to suppress problems.

“What it takes to ‘get it’”

I was enjoying the book, though I didn’t see my Pathological Demand Avoidant (PDA) autistic son reflected in many examples or anecdotes, when I arrived at Chapter 7: “What It Takes To ‘Get It,’” and then I was hooked. In this pivotal chapter, he outlines the experience that we and so many other families have had—finding a person who gets it. We all know what it is like to be misunderstood. PDA families perhaps more than any, because even in autism communities, our experiences are second-guessed; we are gaslit; we are blamed for our children's suffering. We know what it is like for people not to get it. 

Dr. Prizant shares qualities of people who don’t get it, ones I readily recognized from our experience. These are the qualities of what he calls “It-Less People”:

• They have a deficit checklist mentality.

• The pay more attention to a plan than to the child.

• They focus on the child’s reputation, not the child’s potential.

• They try to control rather than support.

• They are insensitive to parent’s hopes and dreams.

Dr. Prizant shares a quote from a mother, thinking back on the things that helped her the most: “‘The people we valued most were the ones who never judged us, but joined us on the journey.’ Nothing could better sum up what it means to ‘get it.’”

We found people who “get it” at an amazing occupational therapy clinic where my oldest Owen  and I walked in the doors when he was 4 years old, both exhausted and traumatized. At the time, Owen was unable to tolerate any shirts at all, or any pants, or any tennis shoes, and so he showed up in the middle of winter wearing shorts, a coat zipped up to his nose, and crocs. The therapist walked out to greet us and took it all in a flash: my son shivering, his body frozen in fear, the hood covering his face, the tears in my eyes. “He’s one of ours,” the therapist said, and we found our home.

This clinic even worked with a local haircutting salon to bring stylists to the therapy clinic, enabling my kids to get their first truly sensory supported haircut. That's a place that “gets it.”

“What’s more helpful is to dig deeper”

Uniquely Human also values the curiosity and question asking that is embedded in low demand parenting. The dominant approach to autism in the diagnostic field “means defining a child by the sum of his deficits. How best to help such a child? By managing those behaviors or attempting to get rid of them…What’s more helpful is to dig deeper: to ask what is motivating these behaviors, what is underlying these patterns…usually the answer is that the person is experiencing some degree of emotional dysregulation.”

Dr. Prizant shares countless heartbreaking examples of traumatized children caught in the behavioral compliance system, which only deepens their emotional dysregulation, lack of trust, and need for control. He also shares the power of one confident, trained adult in the room who can push back, ask for listening, ask for trust-building. 

I found this book helpful for identifying and supporting my PDA son’s more traditional autistic traits like echolalia (patterns of repetitive speech), lining up toys, flapping hands, selective eating, special interests, and sensory differences. Bringing greater understanding and empathy to these traits also helps me to find points of connection with parents of non-PDA autistic kids. 

Drawbacks and limitations

I want to note for potential readers that this book was published in 2015, and the last seven years have seen fairly monumental shifts in language, due to the amazing advocacy of adult autists. In the book, Dr. Prizant uses person first language, “person with autism” instead of identity first language, “autistic.” He states that “some adults with autism prefer the label ‘autistic,’ feeling that autism is indeed a defining characteristic and is essential to their identity and that person-first language implies that autism is inherently bad…While I fully understand and respect that opinion, I have chosen otherwise for this book.” I wonder if it has to do with his imagined audience—a skeptical autism establishment and parents of autistic kids who are starting the process of accepting and valuing their child’s diagnosis. I have also noted that Dr. Prizant’s language has shifted substantially in subsequent interviews and podcasts. Perhaps he has changed his mind and will update the book’s language in time.

If you are passionate about identity first language, take this book as an important exercise in learning to see goodness and value in people who disagree linguistically from you. Divides in the community over language can become more about who is right and can lead to rigidity, rather than looking for the deeper questions of approach, alignment, and gifting. Approach this book with healthy skepticism, like you approach all books. But also approach it with a willingness to learn, even if parts make you uncomfortable.

Dr. Prizant also notes that all of the autistic people with whom he worked closely and built friendships have been male. He names that four out of five diagnosed autistic people are male, but he does not acknowledge the diagnostic flaws that have led to such a skewed population of diagnosed people. Nor does this book make any meaningful steps toward sussing out distinctive presentations of autism that may not fit the typical mold. As a late diagnosed autistic woman, I did not feel particularly seen by this book.

Who it’s for

This book is a must-read for any parents with autistic children, especially those with male children, that follow the typical profile. It’s a must-read for people who are a part of the traditional Autism Establishment. For parents of PDAers, I would put this book on the list to read, once you have a solid understanding of PDA. Many parents of PDAers find that as their child grows and stabilizes, they can see their child’s more typical autistic traits more clearly.

I am grateful for all those who remain in the traditional field of autism research and seek to transform it from the inside out. We need these people, and their efforts have ripples of impact. And I am grateful for Dr. Prizant’s passion for listening to autistic voices, which he beautifully shares in his overarching hope for Uniquely Human: 

“I hope this book will open your eyes—and your ears and your heart. I hope to capture and share the unique spirit of the many children, adolescents, and adults with autism I have known—their enthusiasm, their sense of wonder, their honesty and innocence. I will also describe the many obstacles I have seen these individuals and their families overcome…My hope is that understanding what it means to be uniquely human will make your experience with these distinctive people deeper, more awe-inspiring, and more joyful."