Interview: Barry Prizant

Today, We have interviewed Barry Prizant, PhD., who is the author of Uniquely Human: A Different Way of Seeing Autism, and is one of the Neurodiversity Movement’s greatest allies.

Neurodiversity News: Tell me about yourself and what you do.

Barry Prizant: In 1969, I began working in residential summer camps for children and adults with disabilities. Since then, my 50-year career has focused on supporting and collaborating with people on the autism spectrum, and other conditions that impact communication and emotional regulation.

I am a certified Speech-Language Pathologist, a Visiting Scholar and Adjunct Professor at Brown University (1998-present) and Director of Childhood Communication Services, a private practice (1998-present). I serve on the Professional Advisory Board of the Autism Society of America as well as many other professional boards. Formerly, I was a tenured Professor of Communication Disorders at two universities and an Associate Professor of Psychiatry in the Brown University Medical School (1983-1990). My publications include four books, 130 chapters and articles and The SCERTS Model manuals, an educational approach I developed with colleagues that is now being implemented in more than a dozen countries, and a variety of assessment instruments for children with disabilities.

I present frequently (live and virtually) to varied audiences including more than 900 invited seminars and keynote addresses internationally, including featured invited presentations at the United Nations in 2013 and 2017 for World Autism Awareness Day. For 25 years, I have co-developed, co-facilitate and raise funds for an annual retreat weekend for parents of family members on the autism spectrum. I’ve been fortunate to have received many honors in my career including the 2014 Honors of the American Speech-Language-Hearing Association (their highest honor), 2005 Princeton University-Eden Career Award in autism, and the 2013 Divine Neurotypical Award of GRASP (Global Regional Asperger Syndrome Partnership). I’m also is a performing percussionist with a special interest in the positive impact of the arts on quality of life for persons with disabilities. Related to this interest is that I currently serve on the boards of two inclusive neurodiverse theatre and expressive arts programs: The Miracle Project out of Los Angeles and the Spectrum Theatre Ensemble in Providence, RI. My most recent book is Uniquely Human: A Different Way of Seeing Autism (Simon & Schuster, 2015).

NN: Could you tell me about the writing process behind Uniquely Human? How long did it take for you to write?

BP: Let me begin by sharing my inspiration for writing Uniquely Human: A Different Way of Seeing Autism. I’ve worn many hats in my career and have worked in many different settings — schools, hospitals, summer camps and universities. I’ve always stayed closely connected to the community of children, parents and autistic adults. I’ve learned so much from these experiences and for years, I would tell stories to my wife, my son and my students about what I have learned.  Many of my stories conveyed how I saw children and adults in different ways than other people did, and how they were portrayed in the popular and academic literature. I saw the need to challenge the dominant approaches in the literature on education and therapy approaches, especially those in the category of Applied Behavior Analysis (ABA), especially because they focused on challenges and deficits. In my work and my relationships with children, adults and families, I was and still am intrigued of how interesting these children and adults were, and how they often had strengths that were overlooked, including peaks of abilities and talents that were too often dismissed. A “deficit-checklist” approach (a term I coined in 1983) dominated.

My family, friends and students would tell me how much they learned about autism from my stories, and how different my message was compared to the predominant perspective on autism and other conditions. So I began to document the stories and continued to collect more stories from all my encounters with autistic individuals and their families. In many cases, my daily experiences also inspired scholarly inquiry and research into subjects such as expression of communicative intent by autistic people, the functions of different forms of language (which we referred to as unconventional verbal behavior), but that were dismissed as perseverative, meaningless or irrelevant language. I was also interested in the family experience, parents and brothers and sisters. In other words, I was very focused on the lived experience of autistic people and family members, which was in stark contrast to the most popular portrayals, and tried to be respectful in my writings and presentations. I often spoke of how the importance of “looking at the cup half-full,” and dismissed what I referred to as “deficit-checklist” approaches to autism.

And then about ten years ago, my wife told me that I already have had a successful career in academia in writing books and publishing peer reviewed research and clinical articles in journals and scholarly volumes, but what I really needed to do was to write a book with a more positive perspective that would reach a broader audience, especially parents, family members and autistic people. Parents and family members were, and still are, given false information about the “superiority” approaches based on ABA, and they needed to hear a different, more accurate perspective. It needed to be a book with real stories about what I have learned from autistic children and adults, as well as what progressive research was telling us, because it potentially could be such an engaging way to share what I have learned, especially compared to so much of the “doom and gloom” messages that were so demoralizing to parents and autistic people. And so, with that encouragement, I went down that path. Being an academically trained writer, I knew I was more experienced in writing for an academic audience, so I sought out a partner to help shape the tone of the book. The person I sought help from was Tom Fields-Meyer, recommended by a mutual friend who was a parent of an autistic son. Tom is a professional writer specializing in human interest stories and he also has an adult son on the spectrum. He had published a wonderful book about raising his own son, called “Following Ezra,” which resonated with me. I met Tom and we hit it off right away. And so, Tom agreed to help in making the book more accessible through my stories, as he described his role as being able to help me to get my “authentic voice” and message out to as many people as possible. We went on this journey together for two years and the result is Uniquely Human: A Different Way of Seeing Autism, published in 2015.

And then other wonderful things began to happen. I had the chance to connect with Steve Silberman, who was writing Neurotribes. I didn’t know Steve at the time, but I contacted him. We shared pre-publication copies and we loved each other’s books. We became friends and our books were published within a few weeks of each other. They became kind of companion volumes in the sense that a number of reputable periodicals like Nature reviewed them together. And there was a wonderful review by Judy Endow, who is a self-advocate blogger and author. Judy has a wonderful blog and she wrote a review of our books called “Uniquely Human Neurotribe,” congratulating us for helping to get the respectful message of neurodiversity out to a larger audience. In this way, my book was seen as central to the neurodiversity movement, as Steve shares that his book provided the history and my book conveyed how to put neurodiversity into action, as it was written primarily for therapists, teachers and parents with practical recommendations emulating our educational approach, The SCERTS Model. Uniquely Human is based in my personal journey of scholarly activity and grounded in all I’ve learned from autistic people and families. I now see Uniquely Human as one cog in the wheel of helping to expand the neurodiversity movement, as I’ve been told by Steve Silberman, and so many practitioners and parents. My book has since been ranked by Book Authority as #1 of the “100 Best Autism Books of all time”, and is the recipient of the 2017 Autism Society of America’s Temple Grandin Award for Outstanding Literary Work and currently has 18 translations in press.

NN: Would you be able to elaborate on your doctoral dissertation in the 1970’s? You mentioned that it was built on the foundation of neurodiversity decades before the movement came to fruition.

BP: Let me begin by giving you a little bit of my educational background, which is really essential to understand how I developed my dissertation topic and approach. My initial undergraduate training was in Developmental Psycholinguistics, a new field in the 1970’s that was focused on the relationships between thought, language and communication in child and human development. My MS and Doctoral training was deeply grounded in child and human development. Even though my degrees were in Speech language Pathology and Communication Disorders, I was also well versed in developmental psychology. What dominated the field back then was behavioral psychology, especially in the United States with the work of B.F. Skinner and other radical behaviorists. Ivar Lovaas then developed his approaches to autism based on the tenets of behavioral psychology, and in particular, operant conditioning. My deep training and understanding of how children develop helped me understand that there were many individual differences and variations in how children develop, which was totally ignored by behavioral psychologists.

With this background, I chose to do my doctoral dissertation on echolalia, the tendency for autistic children to repeat speech sometimes immediately, or sometimes using delayed echolalia, also known as scripting. At the time, such speech was labelled as psychotic speech and “meaningless parroting,” but was in stark contrast to what I was seeing in children who produced echolalia. I had just spent years in my Master’s program studying child language development, and understanding that even so-called neurotypical kids have different paths to language development. Most children acquire language through a process known as analytic language development, where language grows from one word, to two words, and to more complex language structures based on the development of this internalized language system that we refer to as grammar. But a minority of typical kids use a rote memory strategy, which is called gestalt language, based on repeating language they have heard. And considering this literature at that time, I said OMG, this is exactly what’s happening with autistic children who use echolalia! One difference with autistic children is that movement through stages of echolalia is drawn out over a longer period of time, whereas typically developing kids very often go through the stages of echolalia, but within a shorter time frame. And furthermore, so much of what I’m reading in the literature was viewing echolalia through the lens of pathology, calling it deviant behavior, bizarre speech, deviant language and so forth, whereas I was able to document many functions of echolalia through my dissertation, “The Functions of Immediate Echolalia in Autistic Children,” which was based on videotape analysis of four children over a year at school and home.  These findings led me to refute Lovaas by saying, “this is human language development. It’s human behavior,” reflecting a different strategy in language development.

The rapidly developing field of neurodiversity emphasizes that due to underlying neurological differences and brain wiring, every person has unique ways of processing information and seeing the world. This new emphasis demands that we understand and respect these differences, and not simply pathologize these differences by referring to them as deviant or as deficits. In my doctoral dissertation, I also discussed how gestalt language development and echolalia could be understood as differences in neurological functioning, and as related to other aspects of cognitive processing such as different modes of memory processing that have been documented in autistic people. So, on reflection, my doctoral dissertation in the mid-1970s was grounded in a neurodiversity perspective, long before the term was coined in 1998 by Judy Singer. My subsequent publications throughout the 1980s and 90s referred to the importance of understanding language and communication in autism as reflecting differences in social and cognitive development. I emphasize how shortsighted, inaccurate and disrespectful it was to simply dismiss these differences as deficits, which is now the emphasis of the neurodiversity movement.

We can extend this lens to other issues in autism, such as sensory sensitivities. It is now accepted that all people vary as to their sensory processing and sensitivities. For example, my wife and my son are extremely hypersensitive to smell, but I’m within the “typical” range. So we could visit a place and they may say, “it stinks in here.” I might respond, yes, I can smell that, but it’s not so bad. I have to respect the fact that they’re extremely hypersensitive on an olfactory level, so smells that do not bother me can be noxious to them. The notion of neurodiversity is also relevant to our sensory modalities, as well as language development, cognitive, social, and emotional development. At a cognitive level, some people have brilliant rote memories, and for example, can rely on a strong visual memory, known as eidetic imagery, or a strength in vivid recall of visual information. This has been documented in some people on the spectrum, more so than in general population.

Let me give you one more example on the social continuum. There’s abundant research on social differences in people, thus the terms introverts and extroverts. And in early child development, even with toddlers, there’s research on very young children who are excessively shy or reticent in their social approach, early predictors of introvert patterns later in development. They’re also more anxious in social encounters and may avoid too much social engagement, as they get easily overwhelmed. We refer to this as social anxiety in more extreme forms. Then there are extroverts who love and seek out social engagement, and who want to meet as many people as they can. Their brains light up when they connect socially with people. My wife is like that – I call her hyper-social. If we are waiting on a line at a theatre, restaurant or at a social event, she wants to meet everybody. Not only that, but she wants to introduce me to every stranger she meets. But I’m towards the other end of the continuum, a bit introverted. I need more alone time. I’m really not interested in making small talk. I might say to my wife, “it’s nice that you found this person whose nephew went to the same college as our neighbor, but I’m really not interested in meeting her and her husband. So don’t pull me over and pull me into a conversation with them.”

So there’s a continuum of sociability across all people, and many autistic people report that it often is so draining and exhausting to try to play the social role and be in the middle of the action with many people. The concept of Uniquely Human captures these differences and variability. Some of these differences may be more pronounced in people on the spectrum. But we still see it in the whole population where we don’t pathologize those differences. As noted, unfortunately, autism has been defined as a check list of pathologies, with such social differences are often cited in defining autism. And our position, looking through the lens of Uniquely Human, is that it is not helpful to pathologize these differences. It’s helpful to understand and ask why and provide the appropriate supports to help a person be more confident and competent in what they do.

So, in summary, I try to emphasize that so much of what we’re seeing in autism is not bizarre or deviant behavior. If it is viewed that way, it opens the door to attempts to punish such patterns of behavior or extinguish it, frequent strategies popularized in the history of the ABA movement. But if you say the behavior reflects an alternative style or alternative strategies to communicate or even to cope with challenging situations, it leads us to ask more questions, and even design educational programs and learning experiences based upon these differences. Granted, some patterns may be on the extreme end of the continuum, and be challenging to individuals and others, but that forces us to ask “why.” Alternatively, some of these differences may be related to strengths that lead to different educational approaches and potential employment opportunities.

I do wish to emphasize that it is important not to minimize or dismiss the challenges that may be related to such differences. Sometimes I am asked, “Well, Barry, are you just saying what we are seeing is a type of normal behavior along the continuum and we don’t need to respond in any special way, just leave things as they are? And if so, aren’t you minimizing the real distress that a person on the spectrum may experience? Or the real challenges that parents experience?” And my response to that is, it’s not about dismissing the difficulty or minimizing the challenges. It’s about giving us a different lens into understanding. And in the field of autism so many horrible approaches that were used decades ago and in some ways are still being used today have to do with changing the behavior of the person, without asking “why.” It is the asking of “why” that allows us to empathize, that allows us to understand the person better, by viewing behavior through a different lens. For example, you’re telling me that that child is demonstrating non-compliant behavior or engaging in avoidant behavior because he’s on the floor screaming. I see a child who is overwhelmed and totally distressed and needs some help with his degree of emotional dysregulation that he’s feeling right now. A different lens leads to different solutions.

NN: How is your podcast going?

BP: Wonderfully. I have a terrific cohost and partner, Dave Finch, who is an audio engineer, a bestselling author, and is on the spectrum. We have done five episodes, and I’ve interviewed incredible autistic people, including Temple Grandin, parent professionals, and thought leaders such as Steve Silberman, author of Neurotribes. We try to engage our listeners by having them share stories about themselves or family members on the spectrum, especially emphasizing more positive perspectives such as “enthusiasms” and how having autistic people in their lives has enhanced their human experience. All episodes can be accessed through www.uniquelyhuman.com, and we invite listeners to join our growing community.

NN: Who are your greatest inspirations? 

BP: Autistic individuals, their parents, and the teachers and therapists I have the privilege of knowing, working with and hanging out with. I’ve also had wonderful academic advisers earlier in my career who allowed me to pursue my passions and my alternative ways of looking at autistic people. My wife’s work as a clinical psychologist and nurse in family centered care in medical settings has been a constant inspiration, and a great source of learning for me. And my son, who will be starting medical school next year, has so impressed me with his devotion to serving underserved populations, and wanting to be a physician who is empathic and a source of support for his patients.

NN: What do you hope to achieve in the future?

BP: My greatest hope is to continue to get the philosophy and values of Uniquely Human to more parents and professionals around the world. Since its publication five years ago, I receive innumerable messages about how it has helped to change lives of children, of their parents, and of communities. I never imagined it would be so universally embraced, and with my presentations and our podcast, we are trying to reach as many people as possible. It is now available in 18 languages, and the themes seem to resonate across cultures and socioeconomic classes.