Today, Hartford Books Examiner welcomes Dr. Barry Prizant.
Prizant, PhD, CCC-SLP, is the coauthor, along with Tom Fields-Meyer, of Uniquely Human: A Different Way of Seeing Autism (Simon & Schuster, $26.00)—out next Tuesday, August 4th. He is among the world’s leading authorities on autism, with more than forty years of experience as a scholar, researcher, and international consultant, and is currently an adjunct professor at Brown University. Dr. Prizant co-wrote of The SCERTS Model: A Comprehensive Educational Approach (now being implemented in more than a dozen countries), and has published more than 120 articles and chapters. He has received awards that have included the 2014 Honors of the American Speech-Language-Hearing Association, 2005 Princeton University-Eden Foundation Career Award in Autism, and the 2013 “Divine Neurotypical Award” of GRASP. Dr. Prizant lives in Cranston, RI, with his wife, Dr. Elaine Meyer, and their teenage son.
Praise for Uniquely Human:
“A remarkable approach to autism….A truly impactful, necessary book.”—Kirkus Reviews, starred review
“Uplifting…This positive volume should reassure parents and caregivers of kids with autism and any other disability that their kids are not broken, but, indeed, special.”—Booklist, starred review
“Dr. Prizant explains the causes of behaviors associated with autism. I love his approach for understanding problems with sensory overload, anxiety and discomfort. He provides common sense, practical advice based on a 40-year career working in the trenches with both parents and teachers.”—Temple Grandin, author of The Autistic Brain and The Way I See It
From the publisher:
Essential reading for any parent, teacher, therapist, or caregiver of a person with autism: a groundbreaking book on autism, by one of the world’s leading experts, who portrays autism not as a tragic disability, but as a unique way of being human.
Autism is usually portrayed as a checklist of deficits, including difficulties interacting socially, problems in communicating, sensory challenges, and repetitive behavior patterns. This perspective leads to therapies focused on ridding individuals of “autistic” symptoms. Now Dr. Barry M. Prizant, an internationally renowned autism expert, offers a new and compelling paradigm: the most successful approaches to autism don’t aim at fixing a person by eliminating symptoms, but rather seeking to understand the individual’s experience and what underlies the behavior.
In Uniquely Human, Dr. Prizant suggests a major shift in understanding autism: Instead of classifying “autistic” behaviors as signs of pathology, he sees them as part of a range of strategies to cope with a world that feels chaotic and overwhelming. Rather than curb these behaviors, it’s better to enhance abilities, build on strengths, and offer supports that will naturally lead to more desirable behavior and a better quality of life. In fact, argues Dr. Prizant, attempts to eliminate “autistic” behaviors may actually interfere with important developmental processes.
While it never discounts the difficulties of living with autism, Uniquely Human offers inspiring stories, and practical advice drawn from Dr. Prizant’s four-decade career working in universities, schools, hospitals, and in private practice. It conveys a deep respect for people with autism and the qualities that make them special. Filled with humanity and wisdom, Uniquely Human offers a compassionate and insightful perspective that parents, professionals, and family members will find uplifting and hopeful.
Now, Dr. Barry Prizant shares his compassion and insight with readers …
1) Why did you write UNIQUELY HUMAN? And why now?
I wrote Uniquely Human because from my earliest experiences with people on the spectrum, this was the most accurate and respectful way I could think of persons who were given the diagnostic label of autism spectrum disorder. Uniquely Human: A Different Way of Seeing Autism shares all that I have learned over more than 4 decades through stories of persons and families whose lives I have been privileged to be a part of.
My “career” began as an 18 year old, working with individuals – young and old – with “special needs” in summer residential camps. I found myself in situations of being a surrogate parent, camp counselor, big brother and playmate of some very interesting children and people. I loved the work and my campers, but was intrigued by the stark contrast between the people I lived, worked and played with over 6 summers, and the negative public perceptions and stereotypes of these people. Even more so, I was perplexed, and even angered by how often these people were described as something short of human, at the very least, “damaged goods”, in academic, behavioral and medical literature. With this perspective, if you had autism you needed to be fixed – trained, controlled and conditioned to learn, and undesirable behavior needed to be extinguished. There was little discussion about our need to understand their experience, the experience of families, and to support them more effectively and humanely due to their uniquely human experience.
At the same time, and due to these personal experiences, I was configuring my undergraduate studies to focus on language and communication problems of people with learning and behavioral differences. I began to catalogue dozens and dozens of stories from all my summer experiences and volunteer work during the school year. As I went on for my MA and Ph.D. degrees in Communication Disorders, eventually teaching at two universities and the Brown Medical School over two decades, I always found my stories to be the most powerful tools in teaching my students. My wife and son also loved my stories, and as each year passed, the stories continued to accumulate with every new child and family I met. I always asked myself, “What had I learned this time?”, and without exception, there always was a story to tell.
Although I was successful in publishing my research and clinical approaches in professional journals and scholarly books, I began to understand that I needed to write a book in a non-academic/non-research genre (the culture I was raised in), in order to share all I had learned in a manner that was accessible to a broader audience, including family members and teachers. Given the negative and sometimes disrespectful state of media coverage and professional literature about autism and related disabilities, I felt the obligation to write a book that would help others to see the humanity in every person with a disability and every family member. The urgency of this need increased as in recent years, we have witnessed a tsunami of internet “experts” and unsubstantiated claims about cures and treatments that overwhelm parents and convey the message to people with autism that they are less than whole people, and therefore need to be “fixed”. I felt I had accumulated enough experience and wisdom that it was time to write a book that that would reassure parents, and maybe inspire professionals to look at autism through a different lens – not one focusing on pathology and deficits – but one that considers each person’s uniqueness and potential. The final “push” came from one of my long time colleagues and mentors, Dr. David Luterman, Professor Emeritus at Emerson College. Over dinner, David congratulated me for a successful academic career but then said, “You have so much more to share – When are you going to write YOUR “f*****g book”. That did it.
A short time later, I met Tom Fields-Meyer, a father, accomplished author and storyteller. I had read Tom’s book “Following Ezra”, and found that his beliefs and values about raising his son were closely aligned with my perspective. After discussing my ideas with Tom, he agreed to help me convey my stories in a style that would be most accessible for family members and a wide range of professionals. In his words, “my job is to help you convey all you have learned through your authentic voice”. Unlike most books on autism that focus on one person, or are more technical in nature, what I share comes from what I have learned from thousands of children and older persons with autism and their families over my four-decade career.
2) Your expertise is recognized internationally. Describe your “Unique” approach to Autism and the history that lead you to a lifetime of work in the autism world.
My lifetime in the autism world can be explained simply: I love what I do, and my work has allowed me to nurture and grow my own humanity by developing wonderful relationships with people on the spectrum, their family members and service providers. Actually, I have never viewed what I do solely as “work”, as it is so integrated with every aspect of my life and my journey.
As mentioned, I was most fortunate to have a confluence of influences starting in my late teenage years. Working with people with disabilities and their families, and charting the course for my undergraduate degree, I was able to relate to the everyday real-life stories of people and families, and shortly after, be exposed to the academic and research literature that was so often terribly inconsistent with my daily experiences. In 1975, my work with families led me to write a manual for my MA thesis for parents on how to improve their child’s communication abilities. With my background in psycholinguistics and language development in children, I began to question the credibility of much of what I read in the autism literature, especially regarding “deviant” language and communication characteristics in autism and so-called “aberrant behavior”.
As I began to consider an area of research for my Ph.D. research, I developed a specific interest in echolalia, the tendency for people with autism to repeat what they’ve heard either immediately, or at a significantly later time. At this time, echolalia was described as “meaningless parenting” and “psychotic speech”, and therefore, efforts were made to discourage or even punish children when they produced echolalia. My work with children who used echolalia led me to a very different opinion-these children were learning to communicate through echolalia, and it was part of their unique process of language development. In discussions with parents, they shared virtually the same perceptions! But I needed to do the research to test this assumption, and I eventually secured a US Department of Education grant for my doctoral dissertation and went on to study four children over a year through videotape analysis of everyday activities at school and with their families. Through meticulous analysis of 1009 instances of echolalia, I was able to prove what the parents had told me and what I observed in all the youngsters that I knew, that echolalia often was functional communication and a part of their language development, directly contradicting prevailing behavioral views at that time. This study gave me the courage to continue to look at the published research and literature about the behavior of people with autism with a critical eye, especially as espoused in the predominant literature on behavior modification approaches (now referred to as traditional ABA).
Being a student of child and human development, I naturally rejected “deficit checklist approaches” and always saw the children and adults I worked and lived with as developing human beings who were best described as “Uniquely Human”, though I did not use that term at the time. In contrast, much of the research literature was focused on documenting how different they were from “normals”, referring to their behavior as “deviant” and “bizarre”. In 1983, I published an article arguing against the “deficit-checklist” approach to autism that dominated the field (and to some extent, still does, but to a lesser degree). I have been blessed with wonderful academic mentors over the years, who were not experts in autism, but who provided me with the courage and support to validate that my concerns about research and understanding of autism were credible.
From a personal perspective, I found that I was (and still am) fascinated by the children and people I have met with autism, and their family members. I have gotten to know and work with leading self-advocates with autism, and through our friendships and work together, my understanding of autism has deepened. Our annual weekend retreat, now in its 20th year, led me to develop a deep respect for parents and the family experience given their courage, love and generosity in supporting others. With these influences, I made a commitment to understand why both people with autism and parents were so often misunderstood, and Uniquely Human is my effort to rectify and put to rest false and harmful assumptions that have been around for too many years.
3) What is The SCERTS® model?
SCERTS is a multidisciplinary, educational and treatment framework that I developed with collaborators Dr. Amy Wetherby, Emily Rubin, and Amy Laurent. SCERTS stands for Social Communication, Emotional Regulation, and Transactional Support, the three domains that we believe need to be addressed as part of a comprehensive approach for supporting children and older individuals with Autism Spectrum Disorder and related disabilities and their families. SCERTS is based on the values and beliefs that are infused throughout all the stories in Uniquely Human, and provides a systematic approach to assessment and program planning for persons of a wide range of ages and abilities. SCERTS is evidence-based (supported by published research), and provides specific guidelines for helping an individual become a competent and confident social communicator and an active learner, while designing activities and environments that support a well-regulated emotional state, thus preventing problem behaviors that interfere with learning and the development of relationships. It is designed to help families, educators, and therapists to work as a team in a carefully coordinated manner to maximize meaningful progress. School districts across the United States and in more than a dozen countries have implemented the SCERTS Model, and the two volume SCERTS manuals have been translated into Japanese and Korean with plans for Chinese and Spanish translations. For information, visit www.scerts.com.
4) Why is this book important to parents and educators outside of the special needs community?
With the dramatic increase in the incidence of autism, there is a dire need for greater understanding. One in 60 people is on the autism spectrum and one of every six families has some connection to autism. A major goal of Uniquely Human is to debunk false and antiquated negative stereotypes, and inaccurate portrayals of persons with autism and the family experience, as they are major barriers to supporting and including people with autism and related disabilities. Some parents say that the most difficult part of having a family member with autism is the stress they experience due to unhelpful reactions of others in public places, and even within the extended family. People with autism now tell us that they are so misunderstood by others, it results in major anxiety and stress. Societal change through a greater understanding of people with autism and their families is an essential part of their successful inclusion and active participation in everyday activities and the full range of environments that all people are able to participate in. Embracing, supporting and appreciating people with autism allows us all to be more compassionate and humane in all aspects of our lives by understanding people with learning differences who try so hard to overcome their neurologically-based challenges. Additionally, many people on the spectrum have the potential to develop wonderful abilities and talents that can contribute to society, but this cannot happen as long as negative stereotypes and inaccurate portrayals of autism continue to exist, for example, that autism is nothing more than a tragedy for the affected person and his or her family.
5) Is it your hope that UNIQUELY HUMAN will be a paradigm-shifting book?
Yes. Despite the progress in autism awareness, and treatment/educational options available to parents, there are so many misconceptions about understanding the behavior and experience of children and older persons with autism, and the experience of their families. On a daily basis, we are learning about how harmful these misconceptions are, from people on the autism spectrum, and from family members. Given my years of experience in the field, I feel I now have a “bully pulpit” to speak out against harmful and inaccurate information, from all that I have learned from people with autism and their families. To be honest, I did not enter this project thinking that book would be viewed as “paradigm-shifting”. I simply wanted to share what I have learned. However, we have been gratified and overwhelmed from the effusive feedback we have received from dozens of advance readers, including highly regarded researchers, educators, and people on the spectrum, all of who have indicated that Uniquely Human will be a “paradigm-shifting” book. If Uniquely Human helps to changes perceptions of people with autism and the family experience in a more positive and helpful direction, I feel very privileged to be a part of this process. It is small payback for the amazing and fulfilling career I have been able to have because of my relationships with people with autism and their families.
With thanks to Laura Rossi, Principal/Director of Publicity for Laura Rossi Public Relations, for providing this Q&A for use on HBE.