Image is the book cover for Uniquely Human by Barry M. Prizant, PhD.
Author Barry M. Prizant is a consultant and “autism expert” who works with the families of autistic children. His new book Uniquely Human is popular in the autism community right now because it proposes “a different way of seeing autism” (per the subtitle), which is that autistic people are not diseased or disordered, but, well, uniquely human.
I have so many mixed feelings about this book it’s hard to know how to approach it in a review or even in recommending it to people in casual conversation. Just looking at the book cover makes me feel a little sad because… is it really “different” to see autistic people as human? This book is striking a nerve with a lot of people, so obviously the answer is yes, this idea that autistic people are human beings who happen to experience the world differently from neurotypical people does sound like a revolutionary message to many readers. His message of compassion is revolutionary. His message that no one should try to extinguish “autistic behaviors” is revolutionary, to many people (not to most autistics, I can assure you).
As with Steve Silberman’s NeuroTribes, I would say that this is on the whole a good and useful book but there are some important critical points that I want to make about it, many of which are about language choices.
One comes up right in the Author’s Note at the beginning, which is about Prizant’s use of person first language (“person with autism”) versus identity first language (“autistic person”). Though he acknowledges that some (I would argue most) autistic people prefer identity first language, he chooses to use person first, without actually explaining why. I wish he had given some reason for this as I find it an odd choice coming from an expert who rejects the pathology model of autism (that is to say, rejects the notion that autism is a disease) and considers autistic people the real experts on autism. To me, “person with autism” always sounds like “person with a disease.” But oh well. Moving on.
Prizant rejects the idea that so-called “autistic behaviors” like flapping, rocking, echolalia (repeating words), spinning things, and so on are symptoms that should be extinguished, but instead are coping strategies to help an autistic person deal with an often overwhelming world. I totally agree with this and love that he says it, but I was little mystified that he also rejected the words “stim” and “stimming” for some of those actions. Those words were once part of the language of pathology but, like the word “autistic” itself, are now reclaimed words in the autistic community. I know lots of autistic people who enjoy talking about the joys of stimming. I felt that Prizant should know this if he really does put the experiences of autistic people first in his research.
Similarly, he rejects the word “obsessions” for the deep, specific interests that many autistic people experience. Again I appreciate that he is trying to move away from the language of pathology, but when replacing negative words I wish that he would use the words of autistic people. Instead, he replaces “obsessions” with a word coined by a parent of an autistic child: enthusiasms. Is it me or is that word a little patronizing? Can you imagine praising Nicolas Tesla for his “enthusiasms” in electricity and engineering? (Not saying many autistic people will be the next Tesla, but, y’know.) Most autistic people I know use words like interests, passions, special interests (another reclaimed phrase), or even – sure – obsessions.
There were other moments in this book when I felt that Prizant was sort of benevolently condescending toward autistic people – I won’t comb through and cite them all. It was just something that popped often enough to make this book problematic for me as a piece of advocacy.
And tying that into my larger qualms about both this book and NeuroTribes, as autistic advocate Judy Endow has written, these books by non-autistic authors and experts seem to be necessary to move the conversation on autism forward because the voices of autistic people are largely still not heard, respected, or trusted as sources of information on autism. That’s a problem and it bothers me. Still, I hold hands with allies knowing that we need them to help us make progress. (It reminds me of how Tim Wise talks in White Like Me about how some white people will only listen to truths about racial justice from other white people, like him, when really black people should be the authorities on their own civil rights, but… reality.)
Which brings me to the GOOD things about this book, in case you thought I wasn’t ever going to get there. Uniquely Human is, in essence, a humane way of seeing autism. Being autistic is a valid way of being and the autistic mind is part of human diversity. “Autistic behaviors” are never meaningless, and parents, teachers, and professionals’ jobs are not to eliminate them, but to understand the person behind them. I felt that Prizant was refreshingly bold in his indictment of autism professionals who do not work with the children in their care, but against them. And he was not Pollyannaish in his portrayals of what the lives of autistic people are like; I think in that regard he probably went a step further (in a good way) than Silberman in showing how autistic people face lifelong disabilities, and will need lifelong support in varying ways and degrees. Not all will become Silicon Valley tech geniuses, but all are valuable, because all are human.
As an operating manual for non-autistic people who care for autistic children, this is surely the best book on the market today. For anyone who is raising/teaching/caring for an autistic child, I would recommend you read this book and give it to everyone else in your life who regularly interacts with that child. But, as with NeuroTribes, after you read this I would highly recommend you move on to reading the words of actually autistic people too – you will learn so much. I am working on a new autistic references section of this blog, but in the meantime a few good places to start for parents and caregivers would be PACLA, Respectfully Connected, and We Are Like Your Child.