By Lorna d'Entremont
February 11, 2016
Uniquely Human: A Different Way of Seeing Autism, by Barry M. Prizant, Ph.D., CCC-SLP with Tom Fields-Meyer, has been a hit since the day it came out in the summer of 2015. Amazon says:
“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.”
|Barry M. Prizant, Ph.D., CCC-SLP|
Lorna: “Refreshing–and constructive…. It should be required reading for all educators and practitioners working with autism…. Breathtakingly simple and profoundly positive.” (Chicago Tribune) Congratulations on all the positive reviews you are receiving for your book, Uniquely Human: A Different Way of Seeing Autism.
Carol Gray, developer of Social Stories™ and a consultant to individuals with autism, even says, “Autism was initially described in 1943, and now with Uniquely Human, it is rediscovered 70 years later as a shared human experience."
In a nut shell, what does your book say about autism that had not been said before?
Dr. Barry Prizant: There are a few themes that I focus on in Uniquely Human that in my experience, either have not been said, or have not been emphasized strongly enough to change public perceptions of our understanding of autism, or the experience of autism. Of course, it is impossible to know all that has been said or put down in print, but with that caveat, here they are:
1.) Autism is not a tragedy.
Robert Kennedy, Jr. is the most recent public figure to perpetuate this myth in a public arena. In Spring, 2015, he claimed that autism has “destroyed the lives of over 20 million children and shattered their families.”
This inflammatory claim is totally inconsistent with my experience of over four decades in working with autistic individuals and families, and is just one example that perpetuates this widely held public perception.
When I consult for schools and families, and speak to thousands of family members and professionals each year, it is evident that challenges associated with autism may result in significant difficulties for individuals and families, but also influences lives in many positive ways. I am always impressed with how many autistic people, and family members, continue to grow and develop throughout their lives and learn to overcome so many challenges, and how much they give back to others.
Furthermore, many autistic people say they do not want to be “cured,” and some parents say they would not choose to make their child “normal” if they had the power to do so. In some cases, parents even call autism a “blessing” that has enriched and deepened their families’ experience. What is tragic is when autistic children and adults, and families do not get the support needed for success in the school years, and for life after school.
2.) There is no such thing as “autistic behavior”. These are human behaviors that must be understood.
Professionals and educators commonly use the term “autistic behavior” to describe the rocking, spinning, repetitive speech, “obsessions”, inflexible adherence to routines and other patterns that may be observed in the behavior of autistic individuals. In turn, treatments and educational approaches often are overly focused on eliminating or reducing these behavioral patterns, and indeed, success is often measured primarily on the basis of reducing or eliminating “autistic behaviors”.
Instead, we make the case these behavioral patterns should be understood as human behavior—reactions to stress, confusion, and feeling overwhelmed, feeling very excited, or reflective of deep and passionate interests.
In fact, decreasing “autistic behavior” may actually interfere with an individual’s developmental progress, as it robs the person of necessary coping mechanisms and strategies to learn. For example, behavior therapists have attempted to reduce or eliminate echolalia, despite the fact that our research and that of others has demonstrated that such behavior may serve important functions in communication and for acquiring language.
3.) There’s no such thing as “high-functioning” or “low functioning” autism.
These labels are not only reductionistic and inaccurate, they can be harmful. Though there are no standard clinical definitions of these terms, they are widely used to describe people with autism. Is a three-year-old who cannot speak but assembles complex puzzles beyond his age level high functioning or low functioning? Is a fourth grader who works at grade level but has such anxiety she bolts from the classroom high functioning or low functioning?
Autistic people typically have a range of abilities, sometimes extreme peaks and valleys of abilities and skills. Reducing an individual in a unidimensional manner of “high” or “low” functioning is simplistic and disrespectful. We believe it is more helpful to focus on levels of support an individual may benefit from, and the specific areas in which more or less support is needed.
4.) The best way to understand autism is to listen to autistic people.
The most significant and meaningful changes in understanding autism have come not from heavily funded research or from professionals, but from listening to people on the spectrum and family members who know them well. Many long-held assumptions about autism have been disproven by insights shared by people with autism.
Says Judy Endow, a woman with autism: “I love when science catches up to the autistic experience. It allows countless people to receive validation overnight….It validates autistic humanity.” Some shattered “truths” include: Being nonverbal indicates low cognitive ability; sensory challenges are a myth and an excuse for “bad” behavior; people with autism cannot have relationships and don’t want friends.
This last theme is the one you noted above and emphasized in Carol Gray’s review of Uniquely Human:
5.) Autism is a shared human experience.
We believe it is helpful to understand that autism does not reside solely within a person, as it is typically described. Relationships with a person with autism shape the lives of all involved: relatives, educators, friends, colleagues and communities. The best way to help autistic people is to focus not on changing them, but rather on changing our attitudes and our behavior, the way we react to them and support them.
Furthermore, non-autistic people should reflect on how having an autistic person in their lives has changed them for the better and has enriched their lives. The public media has overwhelmingly focused on the challenges leading back to the notion of autism as tragedy.
Lorna: Uniquely Human: A Different Way of Seeing Autism helps you see an autistic child as not broken. Parents can relate to your book with its real-life case studies. What are some comments you received that has made the work of writing such a book all worthwhile?
Dr. Barry Prizant: It has been fascinating to reflect on so many comments that I have received in person, e-mails and notes sent to me, from parents, autistic people, educators and therapists. In general, people have been thrilled (and relieved) with the positive and hopeful approach of Uniquely Human, while at the same time, respecting our insistence to not sugarcoat the challenges that autism sometimes brings.
The book has been called “paradigm-shifting”, “the book on autism that needed to be written”, and the “first book that must be read about autism”. Parents of very young children have shared with me that my book has helped them understand their child better and take a more positive approach in raising their child. One mother of a newly diagnosed child stated, “you have illuminated a path that we will follow because it makes the most sense for my child and our family”.
Many parents and family members of teens and adults have commented that Uniquely Human has validated the way they have understood their child and the approach that they have taken, and have expressed gratitude because of this.
Unfortunately, some parents of older autistic individuals say that they wish they had Uniquely Human 15, 20, or 25 years ago as there are so many regretful decisions they made about how they raised their child, too often following advice of professionals.
One young autistic woman told me she takes my book with her everywhere, as it describes her experience better than all other books she has read. Another autistic woman recently came up to me after I gave a talk on Uniquely Human and she tearfully said she wish I had written it 15 years ago, as she was thought of as rude, arrogant, and stubborn, when she was just trying to cope with all the confusion she felt in her life.
A principal of a school gifted copies of my book to his full staff, as he felt he wanted the culture of his school to emulate the values of Uniquely Human. Many reading groups organized by parents and professionals have adopted Uniquely Human.
In general, comments from family members, professionals and autistic people have noted how the perspectives shared in “Uniquely Human” are a “breath of fresh air” when compared to the negative perceptions and even the “the doom and gloom” they hear from professionals, and at times, other parents who are not supported well, or are going through particularly difficult phases.
Lorna: Many feel this book will hasten the necessary changes in the way we see, understand and provide services to persons with autism. What are a few changes that could be made in the way persons with autism are supported that would make a huge difference in their lives and for their families?
Dr. Barry Prizant:
1.) The need for a true collaborative team approach - Autistic people are complex individuals experiencing an array of challenges in their lives that may involve difficulties in sensory processing, social understanding and communication. A true team approach with expertise to address these challenges is needed, with coordination across settings (home, school and community).
In fact, we developed our evidence-based educational model, the SCERTS model, to address these challenges through a team process, with family members and autistic individuals being respected collaborators in the process.
2.) Longer-term planning – Too often, educational and other supportive approaches stay focused on very short-term goals and solutions. There’s a great need for a life-span perspective, with a focus on functional and meaningful goals short-term, but also within the context of a longer-term perspective.
An unfortunate outcome of this short-term perspective is the large number of autistic individuals leaving school services with minimal preparation for dealing with the challenges of securing and maintaining employment and the demands of life beyond school.
3.) More of a focus on supporting emotional regulation and self-awareness – we feel strongly that difficulties maintaining a well regulated emotional and physiological state should be a core feature in the diagnosis of autism, and in our understanding of the experience of autism.
For too many years, professionals entrenched in a behavioral perspective have simply tried to manage behaviors, rather than understanding the underlying causes and purposes.
A major focus of Uniquely Human is the importance of understanding emotional dysregulation, how it impacts a person’s ability to be most available for learning and engaging with others, and the role that plays in the life of autistic people on a daily basis.
As noted earlier, many behaviors that may be observed in autistic individuals may actually be self-regulatory coping strategies. Additionally, in my relationships with many autistic individuals, I’ve come to understand that those who are able to navigate the challenges of everyday living most effectively, and maintain a positive quality of life, are individuals who are most self-aware of the challenges as well as gifts that autism may bring.
Self-awareness is a pre-requisite foundation for self-determination, and should be a major focus of our efforts to provide appropriate supports for autistic individuals.
Lorna: Why is this book important to parents and educators outside of the special needs community?
Dr. Barry Prizant: 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. Many autistic people 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 autistic people 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.
Lorna: We often hear we need more research and resources to identify autism early to intervene early. Why is early intervention so important for a better future for our autistic children?
Dr. Barry Prizant:
First, longitudinal research has indicated that early intervention, especially using approaches that focus on social engagement and social communication and emotional regulation is related to better outcomes and better quality of life years later. A focus of early intervention efforts is to provide the communication skills to allow a child to have more control through communication, such as making choices, protesting and refusing in a socially acceptable manner (by using words, gestures, picture systems, computerized speech) that will help prevent the development of problematic behavior.
Since a large proportion of so-called challenging behavior represents attempts to communicate and have social control, when a child becomes a more confident communicator and learns to express feelings and desires in socially acceptable ways, there’s less of a need to express oneself through less desirable behavior.
Second, in the early years prior to and around the time of diagnosis, parents and family members may go through an agonizing period of confusion and uncertainty. This is a very fertile time to provide educational and emotional support to parents and family members, and help them develop the confidence to problem solve and prepare for the journey ahead.
Unfortunately, when parents are not supported well in these early years, they may find it difficult to develop trusting relationships with professionals and may be confused and overwhelmed by their child’s behavior.
Lorna: You mention parents should identify and build on their child’s strengths and interests and I must add that the child’s teachers should do the same. Please give an example of this happening and the difference it made in the child’s behavior.
Dr. Barry Prizant: One young man whom I diagnosed at three, whose story is shared in Uniquely Human, demonstrated an early ability and motivation to draw cartoon characters, even before he could speak. His parents respected his deep interest, even though others called it obsessive, and it became an important part of his life through the school years. His artistic abilities became a source of pride, an important leisure time activity, and a means for this young man to relax and stay well regulated emotionally when he needed support.
Now in his mid-20s, he is an artist and he teaches drawing and cartooning to young children, and works in a bakery designing children’s birthday cakes. He has a strong sense of identity as an artist, however, this would not have happened without his parents identifying people to bring into his life to nurture the seeds of his talents. Other examples of identifying interests, strengths, talents are provided in my book.
Lorna: You have presented more than 700 seminars and workshops across the US and in more than 20 countries as a featured and keynote presenter at major conferences and you continue to do so. What topics are you most often asked to talk about and what is the target audience for your presentations?
Dr. Barry Prizant: I have presented on a range of topics over the last 3 to 4 decades, with the initial focus being on the development of social communication abilities for children, adolescents and adults on the autism spectrum and with related disabilities.
In the early 1990s, I began to research and focus more on the issue of the development of emotional regulation abilities and challenges experienced by autistic people, and this became a topic more frequently requested at conferences. It still is, especially in reference to preventing problem behavior.
With the development of our comprehensive educational approach, the SCERTS Model (Social Communication, Emotional Regulation, Transactional Support), more than a decade ago, both myself and my colleagues provide trainings at introductory and advanced levels nationally and internationally and continue to do so.
Another area that I provide training, and is becoming a more frequently requested topic, is developing positive parent- professional relationships through collaboration and successful communication.
Finally, I have been inundated with requests for presentations on the topic of my book, Uniquely Human, since it was published six months ago. In 2016 and beyond, I will be presenting keynote presentations at many autism state association conferences, and at universities including Harvard, Dartmouth and Brown.
Internationally, I’ve been invited to present on Uniquely Human at the national autism conference of Denmark, and major conferences in Australia, Canada and Argentina.
The target audiences have always been varied and include educators, speech-language pathologists, occupational therapists, psychologists, social workers, physicians, autistic individuals, and parents and family members. Having such a heterogeneous group of areas of expertise, and the involvement of parents and autistic individuals, provides a great opportunity for wonderful discussion, and always helps me to develop and learn.
I have truly been blessed to have found my passion 47 years ago, going back to summer camps as a teenager, and to subsequently focus my life’s work on my own deep interests – understanding the complexity of human development and supporting those who learn differently and experience challenges in their lives.
I continue to be incredibly grateful to have so many opportunities to share what I have learned, and to continue to learn from professionals, autistic individuals, and their families.
Free Instructor's Guide for Uniquely Human Now Available!
Uniquely Human is now being adopted for university courses and reading groups around the country. The Guide (PDF) provides discussion questions and activities for each of the 12 chapters. It aims to encourage thoughtful discussion and reflection about many subjects raised in Uniquely Human. It is designed to be used as a guide for instructors in classes, and for reading groups.