I’m a reader, a big-time reader. I always have been. While other children were begging for toys and bikes, I was reading my way through bookstore after bookstore. My topics for reading materials vary with my interests but no matter how much time passes, I still seek solace in books.
These days, most of my reading involves my interest, both personally and professionally, in autism. Over the last six years, I have read what feels like mountains of books on autism. I currently have three bookshelves worth of autism books with a nicely sized hill of reading still to climb.
Nonetheless, when anyone asks me for an autism book recommendation, there is always one question I ask, “Have you read Uniquely Human yet?” I ask this because it is easily the single most significant book on the subject I have ever read. So much so, that I decided to tackle it with my online reading group, Becca’s Biblio Files. We were honored to have the author, Dr. Barry Prizant, make himself available to the group. And as I read it through for the second time, I was amazed to see how many people, spectrumites, parents and professionals alike, were feeling equally attached the material. I decided it was definitely time to find out from the author himself what inspired the book.
Being a kind and generous soul, Dr. Prizant agreed to a phone interview. Below is our conversation:
Becca: We’ll go ahead and get started with my first question which is always, how did you get involved in the autism community?
I became involved working at summer camps as a teenager, first at a residential summer camp in Upstate New York and then in Pennsylvania and other places, where I was responsible for having fun with and taking care of people with various disabilities as a camp counselor living in bunks. In some cases, the kids had labels of emotional behavioral disorders, that’s the term they used.
There was always a mix of people, adults and children, on the spectrum in those summer camps. Many of them probably did not have ASD diagnoses, but now that I think back on some of the kids and the adults I worked with, certainly many of them were on the spectrum. We’re talking about late 1960s, early 1970s. Also when I began college, I was at a university that did not have special education or speech language pathology, because I became interested in speech language pathology, I also volunteered in various centers in town.
Most of my early experiences were not through schooling or academia. It was through practical experiences as a caregiver and a volunteer. I feel so grateful having had that experience before I went to work in areas where we were trained to work with people with autism and other conditions. That gave me a perspective of having a few years practical experience already under my belt. I also was reading things in literature and hearing things at conferences did not at all jive with what I was learning from people and children at that time.
Becca: Watching the history of autism unfold is so fascinating to me because I feel like it happened very quickly. For research and science and understanding, I feel like it happened in a very short period. People started their careers in one phase of autism and they’re ending it in another. It’s amazing to me.
Barry: That’s something that I didn’t realize until recent years. Actually, John Donvan, one of the co-authors of The Story of Autism, said to me once, after he had interviewed me for the book, “Barry, you’re one of the few people who has lived your life and career over so many eras in autism.”
I did my Masters’ thesis on autism and one of my most clear memories is writing a manual for parents on how to improve communication. I did my doctoral dissertation on echolalia. This was all in the mid-’70s. Even my professors in speech pathology knew that I knew more about autism than they did.
One of my professors was invited to speak at a local Autism Society of America chapter. It was called the National Society for Autistic Children (NSAC) back then. He was invited to speak on language and language disabilities. He asked me to come along because he said, “You know more about autism than I do.”
I’ll never forget entering the room and a dad came over, who was president of the NSAC Chapter in Southern Buffalo, New York. He said to me, “Welcome, we’re so happy to have you here. If you mention the name Bruno Bettelheim, I will kick you out on your ass.” Of course, it was Bettelheim who popularized the theory that autism was caused by emotionally cold parents. It was a great lesson right away that parents were the strongest advocates. There were no visible self-advocates at that time, as this was more than a decade before we all learned about Temple Grandin .
Becca: Yes. That’s the big piece to me. It must be so amazing. Next question, what prompted you to write Uniquely Human?
Barry: What I did often in my career was share stories about what I had learned. After I went out to consultations in classrooms or meetings with parents, I started jotting those stories down. I had files for each story, sometimes only a paragraph or two. I kept on saying to myself, “One of these days, I’m going to write a book so I can convey these stories.”
Then, Elaine (Dr. Elaine C. Meyer), my wife, really encouraged me a few years ago to share my stories in one volume. She said, “For years, you’ve been saying you’re going to write a book of your stories, that you’re going to convey the stories and all you learned. Now is the time.”
In my career, I have published extensively in journals and books, including many chapters in The Handbooks on Autism, and The SCERTS Model Manuals with my colleagues. Even though I had written and published a lot, it really hit me like a ton of bricks that I was not reaching the full audience I wanted to reach. I was reaching an academic audience, a therapy audience, and some parents who would delve into academic literature, but I wasn’t reaching the general public and most family members. I wasn’t reaching autistic people. I wasn’t reaching people who I thought my message could resonate with. That was the reason for writing Uniquely Human.
I knew that the book needed to be accessible and not academic in nature, so I asked Tom Fields-Meyer, a writer (author of the wonderful book, “Following Ezra”) and father of a young man on the spectrum to work with me on Uniquely Human.
Becca: It’s an amazing book to me. The first chapter, you talk about asking why. In fact, I think I read that chapter twice before I could go on to the rest of the book because it was such a profound moment to me…that it was where you started the book instead of ending it there. Just that it was like, okay, you set the stage for the tone that was going to be coming in the book. Why do you think asking why is so essential to the autism community?
Barry: It’s interesting that you made the point that I kicked off the book with that. I also kicked off my career in research and academia focused on “why”. My doctoral dissertation was called The Functions of Echolalia at a time when echolalia was referred to as psychotic speech and parroting. The conventional approach was to punish kids for echoing, or to ignore them. You discourage or extinguish echolalia to make the child look more normal.
Long story short, I followed four kids I worked with over a year, in the early days of videotape analysis. I videotaped them at home with their families, in school, and in our work together. After analyzing more than one thousand echolalic utterances, I found that echolalia was part of their language development and was how they were trying to communicate. The first “why” I asked was, “Why do kids echo what so many people say?” Still, very well-known researchers at that time in the field of autism, especially behavior analysts, were saying, “No, echolalia is nothing more than meaningless behavior.”
I argued, “They’re not asking the right “why” and they’re disrespecting autistic children by not doing so. Asking “why” progressed to a lot of our subsequent work on understanding so-called “autistic behavior” that was considered “problematic” or “challenging”. We argued that if we understood the challenges experienced by autistic people in maintaining a well-regulated emotional and physiological state, we can reframe our understanding of why so many people on the spectrum behave and react the way they do in some situations, and then apply more helpful and respectful ways to support them. We’ve written a lot in this area, and emotional regulation is an essential foundation of The SCERTS Model, our educational framework.
Let me tell you a quick story that illustrates this point. I met with a dad recently whose 32 month old son was recently diagnosed on the spectrum. A friend asked if I would meet with and give this Dad some guidance.
The Dad told me his child, who is in a regular daycare, recently bit another child. He said, “My child is the sweetest little boy in the world. He’s never done anything like that.” The head of the daycare told him, “Well, I guess we’re just not prepared to deal with aggressive kids like that, even if they have special needs.” The dad said, “Why don’t we talk more about what happened?” My son is sensitive to being touched and does not like loud voices. Maybe the other child kid got into his space and screamed. Maybe it was a protective reaction on my son’s part. He wasn’t intending to hurt anybody”.
This example gets to the importance of asking “why” of what people would consider problematic behavior. Most often, it is the result of the neurological differences in autism, and how this issue is relevant for older autistic individuals as well. For example, law enforcement officials need to understand the “why” of autistic behaviors. “Why does he avert his gaze when being questioned by a policeman? Why does he go bolting in the other direction when another person starts yelling at him just a few feet away from his face?” Asking “why” is so essential because not only does it help us understand people with autism, it prevents us from making false attributions about their intentions from just observing their behavior. It’s so important.
Becca: My favorite chapter of the whole book easily goes to chapter nine, The Real Experts, because for me that validation is something that I have been fighting for as an advocate since I started. You highlighted some of the people you’ve met over the years doing self-advocacy. How important do you think it is to listen to the adult autistics when you are thinking toward the future of our community?
Barry: I think it’s essential. It’s a large part of Uniquely Human and a large part of what my presentations include. I want people to know how much I’ve learned from autistic children and adults. There are a lot of people in the field who “talk the talk” but they don’t “walk the walk”.
I’m very proud to say that along with my colleagues, including parents, we’ve been doing an ASD symposium for more than 20 years. (It’s actually on-hold now due to some funding issues.) But from very early on, we’ve always had people on the spectrum speak. A few that I profile in the book include Stephen Shore, Michael John Carley, Ros Blackburn…we go way, way back. I invited Temple Grandin in the early ’90s to speak at our conferences…Jerry Newport…I could go on and on and name another 10 names.
We always felt it was important to have autistic voices speaking at our two-day symposium. We did it virtually every year going back 20 years. I hope that those actions indicate that I think it’s absolutely essential for parents to go out and listen to autistic people, share their experiences and read their books.
Becca: Yes, it’s one of the few things that I do for free, all the time. It is the most profound experience because there’s always someone who’s first time it is, who just got their diagnosis, who is in whatever place that they’re in and it’s like, “Okay, we’ll meet you there but you want to know what? This is what the future looks like.”
Becca: It’s always our conversation, “Well, you don’t look like my kid” and it’s like, “I hope not, I’m 41. I really hope I don’t look like your six-year-old son. That would be horrible.” So, in that moment, a feeling like, “Oh,” and they have that breath. It’s an amazing experience, so thank you for leading the pack on that because it allows us the validation to say, “Yes, we’re worth hearing and we’ll take our energy and give it back to our community.” I appreciate that.
Barry: Sometimes, it shows the challenges of autism as well. I’ll never forget Ros Blackburn. She is from England. I don’t know if you ever met Ros. She is incredible and Ros spoke at one of our symposia and a parent said to me, “Barry, I love listening to Ros speak. Barry, I hated listening to Ros speak.” She explained that she loves getting insights from a person with autism about how her child may understand the world and be challenged, but she also hated hearing how many invisible challenges Ros had too.
I think it’s important those balanced messages get out because then the public will know so many people, I’ll include you in this category, that are engaging, articulate, wonderful people, who have learned to deal with a lot of your challenges and in some cases, have learned to deal with some inner challenges outside of their public and social situations. I think it’s so important for professionals, parents and the general public to hear.
Becca: Yes, I agree and I really do. I love that we continue to give that back. That is the whole idea of it all, that we can all keep learning from each other. It’s important we always have mixed audiences attend everything.
Becca: Really big important topic to both of us, autism and neurodiversity.
Becca: I see it. I’m hoping that you see it too. There is sort of a shift in our community leading us towards the neurodiversity paradigm. I’m hearing the language change and the attitudes changing. How important do you feel the shift is and the thinking, the attitude, and language to the autistics of today and tomorrow?
Barry: I think it’s very important as long as there’s not a misunderstanding of neurodiversity. Let me just mention it because it’s a great coincidence, I just returned from the Asia Pacific Autism Conference and I did a closing keynote on Uniquely Human. Just prior to my closing keynote, during an interview with Judy Singer (who coined the concept of neurodiversity) now refers herself as being on the spectrum.
She said in very simple terms, “I just want people to know that we all have different brains that we all have different experiences and we process those experiences differently. Let’s level the playing field. Let’s not push some people into some categories that only look at what the challenges are.”
I believe it is essential. For me, neurodiversity emphasizes that all people are unique in how they think, process sensory information and therefore, how they behave.
A point that I often make, even to teachers who are having problems with a child’s behavior, that it’s neurological differences that underlie some of these challenges and these observable differences. Don’t blame the child for having to bolt out of a classroom. Don’t blame the child for throwing a paper off the table if you give them too much work and they feel totally overwhelmed by it.
Unfortunately, there are still many norms in our social society that have determined certain ways of learning and behavior are undesirable and must be discouraged and eliminated. I think neurodiversity really emphasizes that we all have different brains, we all are different people, we learn differently, we behave differently.
Now, where I think it misapplied, is some people believe that the message is, “Well, everybody is different and let everybody be different and let it just be that way.”
What neurodiversity helps us understand is to respect people’s differences and may need different types and levels of support due to those differences. It’s not just let it be or let’s just say that person’s absolutely fine. I’m sorry, that person is not absolutely fine, and may need understanding and support.
Barry: Or a person who is put into a situation with sensory input that is so overwhelming that they just can’t stand it. Let’s understand the support needs that go along with those differences as well.
Becca: I think neurodiversity also opens up the conversation of choices. It allows you to have the conversation that, “Hey, my brain is different than your brain. In order for me to get through my day, my needs are different than yours. I need to have the option to do things differently.”
Becca: If you don’t even know that you have those choices available to you or what they are, you’ve already been limited. I think that’s the disabling factor in the whole piece that we limit some people’s choices or we’ve taken a very close look at the different passes to get us from point A to point B. There’s more than we know.
Becca: That’s the fascination to me, the ability that the brain has to do all of these different things.
Barry: From a societal perspective, there are certain societal norms that we are supposed to follow with that says certain things some people do are valued more than things other people do.
Greatly talented or gifted people are some of the most neurodiverse people on the planet. If they find something in their life that is considered to be a great talent−whether it’s art, music, or science−we may overlook some of their behavior differences. Unfortunately, if it’s not in an area that society says, “Oh, that’s cool,” people who might have great potential, even great talent, their behavior differences are barriers to acceptance and even employment.
That’s another big offshoot of neurodiversity that we have to recognize and Steve Silberman, talks about the subject beautifully in Neurotribes.
Becca: Yes. With the publishing of Uniquely Human, you have offered our community a communication bridge between parents and child, autistic and non-autistic and therapist and client. What has been your favorite response to the book?
Barry: If anybody’s interested, they could look at the Amazon page because there are close to 200 comments.
What I truly, truly value the most are the responses from autistic people. Comments such as, thank you for understanding our experience. Thank you for respecting us. Thank you for helping other people to understand our experience.
I don’t know if you followed some of the reviews by self-advocates like Judy Endow. She asks, “Would I rather have an autistic person write Uniquely Human? Yes, I would”. But Judy said, thank you Barry for doing this because at least to her eyes she saw that it comes very close to what her autism means to her. That’s what I hear and that’s what I value the most.
Becca: I will tell you for me, not only was it validating, but it was so refreshing to see words that I have had in my head and the language that I was hoping our community would be using. And to see it put together in one book! I didn’t feel as though any word was wasted. I never felt, “Oh, I wish you didn’t say that.” There was never a moment where I thought, “Oh, it was really great except for this part.” It’s not so academic-heavy that people turn away from it. They can digest it. The chapters sit alone. They don’t rely on each other necessarily. You can go at your own pace. I love it. I think it’s an excellent book and I recommend it highly to everyone and our book club loved it. They did, they all enjoyed it very much.
Barry: Well, I appreciate that. Again, that just makes me feel like, “Okay, we did our job if people on the spectrum find that it’s really helpful for other people to read.
I think the other message I really try to get across is to parents is that you’re going to be running into a lot of so-called authorities on autism. Don’t necessarily embrace or believe what you hear especially if it doesn’t make sense when you look at your child or your family member on the spectrum.
There’s a long history of misinformation that’s been put out there and considered to be gospel at that time. We are in the middle of an autism revolution and we’re totally rewriting what autism is about and the experience of autism. It couldn’t have happened without all those self-advocates stepping forward. And it also couldn’t have happened if people didn’t have the guts to question authority.
Becca: Yes. Absolutely. Well, I’m just going to skip into a few fun questions. We can have a little fun before we go. What do you consider to be your best accomplishment?
Barry: My best accomplishment? Well, like almost any parent, my child. I have a wonderful young son in college. He’s well-rounded. He’s a musician. He’s passionate about what he’s learning academically. That’s a huge accomplishment.
People tell me that my best accomplishment is that I’ve lived a life and continue to live a life that doesn’t fragment my personal experience from my professional life.
Autism is my life—either from a purely academic experience or from my personal experience— and all the people I’ve gotten to know and respect have become good friends and family members. It’s integrated into my life. I see it all part of constructing Barry. It’s who I am. If you don’t make any boundaries between your work life and your personal life they feed and enhance each other. I haven’t really worked consciously at it but it’s really happened for me. I’m so grateful for it.
Becca: I think that’s a pretty big accomplishment. I think if you can live and work your passion, you’re doing amazing job at living. That is what I’m trying to do and I think that’s what you’re trying to do. Go us, is what I say!
Barry: Yes. It’s so clear that that’s exactly what you’re focused on in your life as well.
Becca: Yes, very much so. Okay. What is your biggest fear?
Barry: My biggest fear for the autism community is the continued and the expanding of what I call commercialization of therapy, especially in the United States. We are such a “sell it” culture and parents and people on the spectrum are victims of that. That’s my fear, that sometimes the people with the most money and loudest bully pulpits are the ones who put trash out there just to make their therapies or their schools commercially successful.
Another related fear is losing the momentum of neurodiversity. Right now, no doubt about it, it’s getting a lot of attention in mainstream culture and in the autism world. I hope we don’t lose the sense of it and the momentum, and forget about it a few years later.
Then finally, one more fear that’s much more personal. I’ve never said this to anybody. Personally, I just passed my 65th birthday so my biggest fear is losing my focus and my ability to be on top of my game in a lot of different ways.
I’m a drummer. I play in a band. Even though I’m drumming the best I have in my life, I’m afraid of losing that because it’s also physically demanding as well. But also, and this hasn’t happened yet, I’m afraid of getting up in front of an audience and come across as unclear or incoherent. I find that when I get in front of people to speak, I’m motivated. I’m energized. I think I could speak as clearly and get my thoughts across as clearly as I could 30 years ago. But I’m afraid of that happening. I’ve seen some people I really, really value, even mentors of mine, enter into their seventh decade and witnessing that ability begin to wane. That’s my sincere fear.
Becca: I think we all fear that though. That’s a big life transition. We know, especially in our community, we talk transition all the time, transitions are hard.
Barry: That’s right.
Becca: They’re unexpected, they’re unknown and they’re hard.
Barry: I think the biggest answer is be gentle with yourself, right?
Becca: Yes. Always. All right. If you had a superpower, what would it be?
Barry: I guess it’s not a specific superpower but I wish I had the power to reach large numbers of people in a responsible way, not in a flamboyant way, with the message of Uniquely Human and neurodiversity.
Also, something that I’ve always felt very strongly about, is getting really good professionals and support people into the field. The message I hope came across in Uniquely Human is your life can be tremendously enhanced by entering professions where you help people as opposed to where you enter professional work just to make money or sell things.
That’s what my hope is, that I could reach people beyond Uniquely Human, in a way that they say, “I want to be an educator, it’ll be really cool. I want to be a therapist.” Doesn’t matter what they do as long as it’s enhancing the lives of other people in a positive way.
Becca: Yes. Totally, agree. All right, secret talents. Do you have any?
Barry: Raising plants. I grew up in apartment building in Brooklyn. I didn’t have gardening opportunities. But if you come to my house now, I have somewhere in the order of 80 or 90 plants in my house. I have a green thumb. It just comes naturally to me. I know how to look at plants, take care of them, and help them do better. One of my favorite things is recovering plants that have been mistreated or neglected.
When I’m shopping in supermarkets, in the plant section. I go to the bargain counter which usually has plants that are half-dead. I like buying them for a discounted price and bringing them back to life again.
Becca: Aww. You go to the plant shelter and save them.
Barry: That’s right! And another secret talent I’ve mentioned previously which I’ve become pretty good at is drumming. I started drumming as a teenager. I played in bands in college and got away from it for decades. I play in a band now. We play roots and blues music. We play for free and we play for food. [laughs] People feed us.
There are other guys in the band who all have their own different careers. When I get up there, I say, “For a guy who just passed mid-60, you’re a pretty damn good drummer.” Young kids come up to me and said, “Hey, I really like you. You’re doing some cool things up there,” that makes me feel good. It’s the old rock and roll ego coming out.
Becca: It’s fantastic.
Becca: All right. What’s one place that you would like to visit, that you haven’t visited before?
Barry: Three places. Africa, definitely, I’ve never been there. I especially would like explore their drumming culture, because I’ve studied African drumming for a few years and would love to go where people live and breathe drumming as part of their culture.
Then I’d like to visit some parts of Asia. Vietnam, Thailand, Malaysia, I’m drawn to them. This was only reinforced a few weeks ago at the Asia-Pacific Conference. I sat down and chatted with people from Vietnam and a mom from Malaysia, who was starting an Autism center there. There’s something about those cultures, especially the food, that really draws me.
Then finally, the place that everybody in the East Coast wants to go to, because it’s so easy to get to…Iceland.
Becca: Fantastic choices. The last question is huge and is also my personal favorite, do you dream and do you have any recurring dreams or nightmares?
Barry: Yes, I dream a lot. The majority tend to be anxiety dreams about, and this may sound strange since I do so many, presentations. Things like technology issues, being late, or missing flights. Some people might be surprised at my response since the feedback I often get is, “You never seem nervous when you present.” I’m not but I always say, “Presenting is the easy part. Technology and all the planning and getting to the place is the hard part.” I also dream about important people in my life who have passed on, including both of my parents and dear friends from many parts of my life.
Becca: It’s true. I totally agree. Well, I thank you very much for your time. This has been absolutely fantastic.
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