"Uniquely Human:" A discussion about autism with Barry Prizant, PhD

Many thanks to Barry Prizant, PhD, for joining me on this episode of The Art of Medicine with Dr. Andrew Wilner! 

Dr. Prizant is the author of “Uniquely Human” and co-host with Dave Finch of the highly successful “Uniquely Human “podcast. 

Dr. Prizant has more than 50 years of experience working with people with autism. He began working with children with disabilities as a teenager and never stopped. 

Dr. Prizant is one of the developers of the SCERTS (SC-social communication, ER-emotional regulation, TS-transactional support) model for children and adults with autism spectrum disorder and their families. He has authored 150 scholarly articles and chapters and frequently lectures on autism.

During our 45-minute discussion, Dr. Prizant defined autism and neurodiversity. He also addressed the apparent rising incidence of autism. We talked about the challenges that many people with autism face, as well as the fact that 10-15% possess “savant” abilities.

Dr. Prizant shared his perspective on ABA (Applied Behavior Analysis) therapy, which is often prescribed to newly diagnosed children with autistic spectrum disorder. He contrasted ABA therapy with DRBI (Developmental Relationship-Based Intervention), a therapeutic approach that fosters meaningful relationships in order to enhance communication skills. Dr. Prizant expressed concerns that many ABA therapists are not trained in child development and may not fully understand a child’s behavior.

We discussed Steve Silberman’s landmark book “Neurotribes,” perhaps the most comprehensive book on the history of autism ever written. I’ve read both “Uniquely Human” and “Neurotribes,” and highly recommend both of them. (“Uniquely Human” is an easier read, and I would start with that one!)

In a recent episode of the “Uniquely Human” podcast, Dr. Prizant paid tribute to Steve Silberman, who recently passed away. Here’s the

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Transcript

[Andrew Wilner, MD ](0:08 - 2:31)

Welcome to the Art of Medicine, the program that explores the arts, business, and clinical aspects of the practice of medicine. I'm your host, Dr. Andrew Wilner. I've planned a great program for today, but first, a word from our sponsor, locumstory.com.

Locumstory.com is a free, unbiased educational resource about locum tenants. It's not an agency. Locumstory answers your questions on their website, podcast, webinars, videos, and they even have a Locums 101 crash course.

Learn about locums and get insights from real-life physicians, PAs, and NPs at locumstory.com. Today, I'm pleased to welcome Dr. Barry Prizant. Dr. Prizant has worked with children with autism for more than 50 years. He's the author of the best-selling book, Uniquely Human. Dr. Prizant also co-hosts the Uniquely Human podcast with Dave Finch. Dave provides his perspective as an audio engineer, family man, and adult with autism.

By the way, for those interested in the topic of autism, please see prior episodes with Temple Grandin, Eric Garcia, and Emily Santagati. There'll be links in the show notes. I'm eager to speak with Barry because his knowledge and practical experience with autism is so extensive.

And now to my guest, welcome Dr. Barry Prizant. Thank you so much, Andrew. It truly is a pleasure to be here with you today.

Thanks for joining me. I gave you the parameters, 20 to 40 minutes, but I feel like we could definitely talk all day, but we won't. So we're going to try and be focused.

And I do have a lot of questions for you. But before we get started, I know your story. One of the reasons I wanted to have you on the program is you are a national resource.

How many people on the planet have worked with people with autism for 50 plus years and studied it in depth as a human being and as a scholar? And I think that's a small number. So you're kind of very special.

So how did this all start for you?

[Barry Prizant, PhD] (2:31 - 5:10)

It all started as an older teenager working in summer camps. And I am so grateful for the opportunity to work with children and adults on the autism spectrum, but many other people with disabilities. And these summer camps, starting in upstate New York, were residential.

So I was essentially a surrogate parent, 24 seven for two months, every summer over six or seven summers. And the reason I'm so grateful for that experience is I got to know people with varied disabilities. And of course, the diagnosis of autism was much more rare at that time.

But some of the people I work with, some of the kids for whom I was responsible for in terms of their happiness, their well-being, their safety, had autism diagnoses at that time. And it was only after the first couple of summers of those experiences that I kind of steered academically in that direction. All right.

So nitty gritty, what is autism? Autism, if you want to go by the DSM-5 definition, has to do with problems in developing social relationships, in social communication, and also what's called a restricted range of behaviors and interests. And I say, according to the DSM-5, there are many people who wish those definitions can be modified and changed to some extent.

So for example, even though it's included under a restricted range of behaviors and interests, sensory issues are now reported to be so dominant, affecting the lives of people on the autism spectrum, being too sensitive to sounds, being hypersensitive to touch, or in some cases, underreactive or under-responsive. And probably it was Temple Grandin who really emphasized the sensory issues way back when, before that was included in the DSM-5 serial of definitions over time. But one of the problems with the DSM-5 definition is that it results in under-identification of girls and women.

So right now, people are even saying maybe there needs to be a different set or a modified set of criteria for girls and women, because they present slightly differently than men and boys do.

[Andrew Wilner, MD] (5:11 - 5:17)

Let's continue our definitions with neurodivergent.

[Barry Prizant, PhD] (5:19 - 7:39)

Yes. Neurodivergent, you know, comes out of a movement which is referred to as the neurodiversity movement. And in its simplest form, the definition of neurodiversity has to do with the fact that we all have different brains and we all process our lives on a sensory level, on a social level.

We all think differently, cognitively. We have different learning strengths and challenges. So that's what neurodiversity is, across all of humanity, recognizing that.

Neurodivergence is when, if you look at the old bell curve, where we see individuals who kind of fall out of your typical profile, even within the differences that neurodiversity defines. And, you know, something that's not emphasized enough, most often when we talk about neurodivergence, people talk about different clinical categories, such as ADHD, such as mental health conditions, anxiety disorders, learning disabilities, autism spectrum disorders. But what is getting a lot more attention now is the other side of the bell curve, and that's giftedness.

So you could be a person who meets criteria for being gifted. It might be in music, it might be in your knowledge of history, but you are so superior in those areas that that's a form of neurodivergence as well. There's actually a category now that's known as 2E, twice exceptional, which is defined as having a clinical condition that presents challenges to you.

And it might be learning or social difficulties, but that you are also gifted in some areas as well. Specific to autism, the term savant comes up. So a person who has savant abilities, and in autism, it's estimated to be about 10 to 15% of people with an autism diagnosis have savant abilities, that would be on the gifted side.

But still, those people may have major difficulties in social understanding, might have major sensory issues that they have to deal with that are truly debilitating in everyday life.

[Andrew Wilner, MD] (7:41 - 8:31)

Okay. I was going to bring that up later, but since you bring it up now, I'm a neurologist and my everyday job is trying to understand usually what's wrong with the brain. Why is this patient paralyzed on one side?

Why do they have severe headaches? Why are they having seizures? What is different about the brain?

So you've described a situation where there are people who have challenges, could be speaking or understanding social situations, and yet can be gifted off the bell curve, phenomenal memories or ability to calculate. I mean, the movie Rain Man comes to mind, people often refer to that. Oh, what's going on?

[Barry Prizant, PhD] (8:31 - 14:55)

Yeah. I always go back to Howard Gardner's work, and it's not without some controversy, but Gardner's theory of multiple intelligences that he began to write about in the 1970s and 1980s. And of course, what he was trying to get across was that it is so overly simplistic to talk about one or even two types of intelligence, such as verbal intelligence and nonverbal.

So depending upon which current model you look at, some folks talk about eight or nine different kinds of intelligences. There could be visual spatial intelligence, there could be musical intelligence, logical mathematical intelligence, linguistic intelligence, bodily kinesthetic intelligence. So then when you think about people who are exceptional in any one of those areas, let's start with bodily kinesthetic intelligence, you might become a great ballet dancer if you have this great sense of coordination and movement in body and space.

Linguistic intelligence, you might become a poet or just become extremely competent in acquiring many languages, in some cases essentially without the effort that other people have in doing that. Visual spatial intelligence, let's talk about Temple Grandin and how she designs, in her mind, blueprints of very, very complex animal handling facilities to be more humane in the way we treat animals. And we could go on and on with musical intelligence, with people who are incredibly artistically gifted.

Some people now talk about naturalist intelligence, that you just have this intuition about the natural world and about animals in the natural world, and maybe you become a park warden in a national park. So the whole point is that you can be extremely gifted in some areas and not so much in others. And let me give a specific example of this, which is a big area of controversy in the autism sphere, and that is you could have non-speaking people on the autism spectrum and they might be non-speaking because they have significant motor challenges in terms of being able to produce a speech that's articulate or even to be able to vocalize volitionally, voluntarily at all, yet we're discovering many of these people might be brilliant in other ways. And I say it's controversial because we're discovering many people.

Let me give an example of a woman who I've gotten to know pretty well, Elizabeth Bonker, who was thought of as significantly intellectually disabled up until her teen years. And then she learned to type to communicate and was one of the valedictorian recipients at her college two years ago. You can see her valedictorian address on YouTube.

It has like, I don't know, 5 million hits. And she gave this brilliant speech about how literally, and she mentions this, I think it was a high school principal who heard she had been picked as a valedictorian. And he said something like, I never thought that retard could go so far.

And it has to do so much with how we conflate intelligence with verbal skills in Western culture. The more you speak and the more you can come across and articulate your thoughts, we thought, well, that's a more intelligent person. Um, so, you know, but what about Stephen Hawking's now he developed typically than had an acquired condition.

Um, and he lost all the ability to speak, but nobody ever questioned that he was a brilliant man. Um, and I think in part, because he had developed typically, and I believe it was in his teen years, he lost his, all of his ability to speak, but there are many people who never are capable of speaking, but still can demonstrate brilliance in many areas. You know, we could go on and on about extremely well-known people.

So another good example is Richard Branson. Um, he's very open about being learning disabled, dyslexic. He had problems reading, but he had this incredible entrepreneurial business sense that led him to become one of the most successful entrepreneurs in the world.

Okay. Um, we can go down the paths of so many people right now. Um, Elon Musk, of course, uh, who does have an autism spectrum diagnosis, some Asperger's, uh, who, you know, kind of violate social principles of the way you act and the way you speak in many ways.

Um, and yet look at what he's done in terms of his entrepreneurship, um, especially, you know, in, in science related topics. So, so the point is that we have so misunderstood so many people who do not excel in so many ways that we would expect them to excel. Um, whether it's the way they speak, whether it's their social appropriateness, yet Einstein supposedly was a social, not only social recluse, but was extremely clumsy socially, um, in many ways.

Yet it does seem in our culture, if you develop the level of ability, that, uh, extreme ability that society values, then we call that person genius and eccentric. Um, and we allow for things that might be very off putting in other people who do not have that special ability. Um, and so that pretty much sums up neurodiversity and neurodivergence right now.

Um, it is really changing the way we're looking at people who we thought of as primarily disabled and, and looking at these people and saying, well, let's look at the differences, let's look at the strengths and let's put the right supports in for the challenges.

[Andrew Wilner, MD] (14:56 - 15:06)

All right. One, all right. Now, one thing we have to get out of the way, is there an epidemic like I read in the news of autism?

[Barry Prizant, PhD] (15:07 - 18:15)

Uh, yeah, again, there are many different opinions. I will tell you mine. And it's very consistent, uh, with, uh, a person whose book you read neuro tribes.

Uh, the late Steve Silberman, um, actually became a good, a close friend of mine, uh, because my book, Uniquely Human and Neuro Tribes were both published in July of 2015. And they were actually reviewed as companion volumes by nature magazine by Chicago Tribune. Um, and Stephen, I thought of the book, the books that way.

So why am I mentioning Steve? Steve was one of the first people to put out there in public, a very strong statement that there is no epidemic of autism. We are just recognizing autism, uh, because in many more people, because the criteria have become much, much more inclusive and looser over the years.

Um, and I, I mentioned earlier the issue of autism in girls and women. Um, one of the reasons in general that we're seeing a much higher incidence is late diagnosed autism, autistic people, self-diagnosed people, but that doesn't really account for the numbers of increase that we're seeing in diagnosis in younger individuals and kids. Um, and it, it really is in my opinion, uh, due to the greater flexibility.

Um, so kids right now who show more social connectedness, um, even more social quote unquote intuition than other kids might be thought of as being on the spectrum. Uh, as you know, that whole Asperger's diagnosis was tossed out in DSM five and in 2013. Um, but we are now looking at many, many kids who we would have thought of as being too social.

Um, and too engaged, if you will, the same thing on the other end, um, for maybe kids who were thought of as primarily intellectually disabled, um, because they didn't speak, uh, because cognitive testing was very difficult to get an accurate picture of their intelligence. Um, now we're looking at broader criteria and some of those individuals are not getting autism diagnoses as well as diagnoses of possible intellectual disability. Um, uh, and then I think that goes for a lot of diagnostic categories.

It used to be more mutually exclusive that if you got a diagnosis of a attention deficit hyperactivity disorder, you couldn't get a diagnosis of autism. And there's much more allowance for co-occurring conditions now that it's okay to have a diagnosis of autism and ADHD and autism and anxiety disorder and autism and bipolar, many, many more co-occurring conditions that allow for a diagnosis of autism.

[Andrew Wilner, MD] (18:16 - 19:21)

Whether or not the, say a child has a special ability and it does seem to be a minority of children. Uh, you gave a number of 10 to 15% of having something really off the scale. Uh, some of the, you know, for parents, these children can be very, very challenging.

You know, the lack of, uh, social abilities or difficulty speaking translates into, uh, picky diets, you know, afternoons of therapy and screaming and difficulties going out in public and with meltdowns and, um, what advice? Oh, I want to take advantage of your 50 year sort of, uh, longitudinal view. Did those children, can they overcome that so that they can, when they're adults, that they have what we consider to be a typical productive life, you know, a job, a family, uh, hobbies, friends, does that happen?

Or is this sort of a permanent condition?

[Barry Prizant, PhD] (19:23 - 20:00)

Well, you know, the best way to answer that is with specific examples. Okay. Um, you mentioned Jury Fleming, um, and, uh, uh, an adult on the spectrum who wrote how to be human.

Um, the book, uh, we interviewed him on our podcast and he said he had wild tantrums up until I think he said eight or nine years of age that he was considered to be at times an out of control child. Well, he was the first Rhodes scholar with autism. Okay.

[Andrew Wilner, MD] (20:01 - 20:02)

I thought that was pretty impressive.

[Barry Prizant, PhD] (20:03 - 25:05)

Yeah. And, and, um, he has his PhD. Um, he is a scientist, a very nice man to speak to.

Um, and again, we can go on and on even Temple Grandin. A lot of people don't realize that, you know, probably the most famous autistic person in history. She didn't begin speaking until she was four or five years of age, where traditionally you would look at that and say, Oh, well, you know, a prognostic indicator for a better outcome would be communication abilities very early on.

And, and look at her now. I mean, again, she's written about, I think about 15 books altogether with about half of them being on autism and the other half being on animal science. Um, so we could go on and on with examples of individuals.

Um, Jordan Zimmerman, a non-speaking woman who still is not speaking, who was thought of as significantly intellectually disabled. Um, not only as she finished her bachelor's and master's degree in education. Um, but she serves on some of the highest level committees, um, on research on autism in the country.

Uh, and Elizabeth Bonker as well. I mean, Elizabeth was thought of as severely intellectually disabled. She has an international foundation that she started with her mother.

Um, it's called communication for all. Uh, so many examples. It's one thing that I still believe is very true is you cannot take a snapshot of a younger person.

And what I mean by snapshot is a developmental profile based upon testing and so forth and predict to what they will look like as a teenager or as an adult. Um, I know some autistic people who didn't begin speaking until they were young adults. If you just want to hold up speech as kind of a marker of, of progress in individuals.

Um, there's so much we don't know. Um, and there's so much more we need to learn. And a lot of that's coming out of the non-speaking community right now.

Um, because those are the people who I feel are so misunderstood primarily because in Western culture, we look at, as I mentioned earlier, speaking ability as kind of such a firm marker of intelligence and also positive prognosis. And I would say it's a marker of how misunderstood you might be. Uh, and yeah, so there, there's so much we need to learn about what are the signs that when you mentioned, well, what about those kids who have so many tantrums, those kids who are picky eaters on and on and on, especially engaging in what's considered to be problematic behavior.

And I always like to say problematic, not only to other people, but to themselves. Okay. We're talking about one of the areas that I feel, um, we actually introduced this concept into autism in the nineties.

Um, and that is the concept of emotional regulation. Um, and it's not just emotion of being able to regulate your emotions, your anger, your anxiety, even your joy, if you get too excited, but also physiological regulation. Okay.

These go hand in hand, emotional, physiological regulation. Um, I think the more we support people and it's a big part of our educational model, which is called the certs model. Um, S C E R T S the ER is emotional regulation.

Okay. And the more we can support a well-regulated physiological and emotional state, the better the prognosis for a person with a neurodevelopmental disability, such as autism. Um, and I don't want to get too much into the weeds here, but many co-occurring conditions, conditions you're very familiar with as co-occurring with autism, severe gastrointestinal issues, the sensory issues, many of these conditions result in a highly dysregulated state in a child or an adult.

And we define emotional regulation very simply, and that is the ability to stay available for learning and engaging. The better regulated we are, the less anxious we are, the less we are debilitated by all the sensory input in the world, the less we have social anxiety where other people might challenge us to be well-regulated. And by the way, a lot of autistic adults say the most challenging aspect of their lives is other people.

People get in there.

[Andrew Wilner, MD] (25:05 - 25:07)

That's true for a lot of us. Yeah.

[Barry Prizant, PhD] (25:09 - 30:11)

And, and by the way, uh, on that point, I've said many times that autistic people are challenged by the same things all people are challenged by. What's the difference? We have better coping strategies.

We have better ways to deal with that. So if you are going to a concert and you're in an environment that's overwhelming because the music is too loud, you will say, I can't stand it. I need to leave.

You might actually go in with earplugs knowing it might be loud music. You might take a lot of breaks. You put an autistic person, even if they like the music in that setting, they might have a meltdown because their sensory system is overwhelmed.

The neurological system is overwhelmed. What about foods? Okay.

We do know that many autistic and neuro people with neurodevelopmental issues have more food sensitivities and food allergies co-occurring conditions than many of us have. Yet we will avoid those foods. We will make sure we don't eat those foods.

Yet parents, well-meaning parents may not understand their child has those food sensitivities and allergies until they get tested. So you might have kids who are literally just overcome with pain in their belly because of those food sensitivities. So we are more aware and we're able to communicate to request assistance with many of our challenges in life.

Whereas many people with neurodevelopmental issues, not just autism, may not develop that awareness to advocate or may not have people to advocate for them. And so that really comes down to what kind of supports do we put in the lives of people? And do we teach and help autistic people to be very self-aware where they can say, and I, you know, I have many friends who are autistic, you know, where they can say, I can't go into that restaurant because it's too noisy.

Okay. Or my friend, Roz Blackburn, an autistic woman from England, I have presented with her, traveled with her. If we go to a restaurant, she'll say, I need to sit at that table back in the corner because I can't sit in the table because there's noise around me.

What she actually says is I can't stand quadraphonic sound. Temple Grandin's the same way. You know, she said, I need to know what my schedule is.

I don't do well with uncertainty in my life. I don't do well with loud sensory environments. I need things, and this is a huge issue for people on the autism spectrum.

I need things to be predictable. Now, again, I like to say we all benefit from predictability in our lives, and we may benefit from it. We may know how important it is to have a new schedule, going to a new setting or to a new job.

Autistic people crave predictability to the extent that if things are uncertain, you're likely to see a much more anxious person who might be at much higher risk for having severe anxiety leading to meltdowns. So these are very, very important issues. The overlap between all of us and autistic people.

So we know how to support ourselves better, and we surround ourselves with people who support ourselves better. It's not always the case with autistic people. Last point, the way an autistic or neurodevelopmentally disabled person may react may be seen by some people as bad behavior.

It's intentional. He knows what he's doing. He's too smart to have a meltdown at this time.

And right now, there's much more of an effort to try to really understand the experience that a person with autism or a neurodevelopmental condition, what is their experience from the inside out? And we're finally having enough adults who now talk about what it was like in their lives. I asked Jerry Fleming, was he aware of the difficulties he was having that led to a meltdown?

And he said, not really. He said, all of a sudden, I'd be in a situation or a setting that I needed to kind of survive and protect myself. You know, good old fight and flight reactions.

And he was saying, no, I wasn't aware. I became gradually aware with the help of people. And my parents were very conscious of what situations not to put me in.

But the awareness that I have now helps me so much because I will not basically shoot myself in the foot by putting myself in an at-risk situation.

[Andrew Wilner, MD] (30:13 - 30:55)

A lot of parents, you know, the child goes to pre-K or kindergarten. And the next thing you know, there's a phone call from the principal or the teacher. Your kid keeps running out of the room and is not paying attention.

And we think there's a problem. And after testing and visits to the pediatrician, there's a diagnosis of autistic spectrum disorder. And then the next thing is your kid needs 40 hours of ABA a week.

Right. What do you think of that? Does that make sense?

Is that that's what's happening? And is that the right way to go?

[Barry Prizant, PhD] (30:56 - 33:31)

That's what's happened for many years. So let me be blunt. And anybody who knows the work that I've done over decades with my colleagues, this won't be a surprise.

ABA and the field of Applied Behavior Analysis has done an incredible job of selling their product. Okay. I'm not saying that ABA therapy and what we learn from Applied Behavioral Analysis might, in some cases, give us a different window into looking at what's going on.

But for decades, for decades, it was stated without the evidence that this is the gold standard of therapy to the point that many people would tell parents, don't even look at other approaches or other therapies, because this is what you need. Now, we're not going to have time to go into the weeds. There are very traditional forms of Applied Behavior Analytic Therapy based on learning theory.

There are more modern approaches that still are based in kind of what we used to call behavior modification and learning theory based upon Skinner's work early on. Every child is different. Okay.

Current meta-analyses of research now indicate that what is called developmental and relationship-based approaches actually result in better results than Applied Behavior Analysis. Okay. There is now an effort and I'm part of a team of a number of professionals, including pediatricians, child psychiatrists, in really getting out to the world.

This category of approach is called Developmental Relationship-Based Interventions, D-R-B-I. Okay. There's an article that was just published about D-R-B-I approaches.

And we had an interview, shameless plug here on Uniquely Human, the podcast with Josh Fader, who is an autistic psychiatrist, who has an autistic son. Andrea Davis is a clinical psychologist about D-R-B-I. Now, you might say, okay, well, I've never heard of D-R-B-I.

What falls under that category? Many people are familiar with the work of Stanley Greenspan and floor time.

[Andrew Wilner, MD] (33:31 - 33:38)

Right. I was just going to ask about D-I-R. Is this sort of a derivative of floor time?

[Barry Prizant, PhD] (33:38 - 39:57)

Yes. D-I-R is Developmental Individualized Relationship Intervention. D-I-R falls under the new category, the broader category of Developmental Relationship-Based Intervention Approaches.

For example, Dr. Josh Fader, who I just mentioned, worked with Stanley Greenspan. I worked with Greenspan also for a number of years, for about five years before he passed away, which is more than 10 years ago now. It's hard to believe.

The CERTS model, the model that I've developed, which is an evidence-based model used internationally, also falls under this category of Developmental Relationship-Based Intervention. The PLAY Project, Richard Solomon, who's a pediatrician out of University of Michigan, the PLAY Project falls under this category. The PACT approach out of the UK, founded by Jonathan Green, a very heavily evidence-based and researched approach.

He is a psychiatrist. We are finally getting together. That has been done in ABA for a number of years.

There are about six or seven different approaches under ABA, pivotal response training, LOVAS therapy, and on and on. Let me give you my major, major concern, besides the commercialism of ABA. That is, people who are trained and even highly credentialed in ABA who get a BCBA have no training in child and human development.

It's not required. They have training in how to use and how to write behavior plans to modify and change behavior. I think some of the greatest misuses of ABA, and there have been many, I'm not the first to say this, is when you're dealing with people who do not look through a developmental lens and do not understand that all human beings go through stages of development that, in some cases, may be looked at as problem behavior, yet it's a child who is going through stages of self-determination, which all children do, where they push back a little bit. Probably one of the greatest concerns is the overwhelming majority of autistic adults who have gone through ABA as kids have great concerns about how that affected their lives. Some even say it caused trauma for them.

You have autistic adults who say they experience PTSD after years of ABA therapy. Now, that would probably be much more in the traditional ABA therapy. My doctoral dissertation in 1978, it was completed, challenged Lovaas, the grandfather of applied behavior analysis in autism.

He said, clear example, that repeating speech, which is known as echolalia, was an autistic behavior that was aberrant. He called it psychotic speech, and it needed to be extinguished. It needed to be punished or ignored.

I, being a developmentalist, my training is all in child and human development, language development, cognitive development. After working with kids for a few years who were echolalia, who repeated speech a lot, I said, no, there's more going on here. Back in the early day of videotape analysis, I followed four children for a year who repeated speech a lot and found that it served a lot of different functions, that it was a part of their language development, and it changed 180-degree different look at echolalia.

Another example is stims. For years in applied behavior analysis, if you see kids who rocked or flapped their hands, repetitive movement and motor behaviors known as self-stimulatory behaviors, it was thought of, okay, we need to punish that. There are studies using shock in the 60s and 70s from an ABA perspective to try to stop that behavior, because how do you treat autism?

You stop autistic behaviors. But nobody asked the deep why. Why are these individuals doing this?

What do we now think about self-stims? It serves different purposes. The most common purpose is it is a way to self-soothe or to self-regulate when feeling dysregulated or highly anxious.

Now, we all rock now and then, but we usually will not rock when people are watching us. We might rock in our house, or we might tap the desk if we're trying to solve a problem. If an autistic child does that, very often, there needs to be a behavior plan to stop the behavior or extinguish the behavior.

And that's what a lot of autistic adults say, that a lot of what they were doing and even saying as an attempt to communicate or regulate themselves was not only discouraged, but in some cases, ignored or punished. Yet, it was their neurology trying to help them be in a better state for learning, being more focused, being less anxious, needing to move your body, especially if you are a high arousal person and you need to move around a lot. All of that was seen as problematic behavior.

And now we need, and this is a theme of my book, Uniquely Human, what I've learned from autistic people, we need to ask what we call the deep why. You can't just say it looks different, so stop it. You have to say, why is this person doing this?

And in some cases, teach them other ways to regulate, especially if what they're doing may be seen as stigmatizing or socially undesirable.

[Andrew Wilner, MD] (39:58 - 40:56)

Let me just say, I read your book, and I also read Neurotribes, and I would agree that they are very complementary. Neurotribes is like this encyclopedic history of autism that is not an easy read, but it is fascinating. Your book is much easier to read and much more accessible, and I would say read that one.

Read Barry Prizant's book first, and then move on from there. And of course, it's available in all the usual places, Amazon and your website. Barry, before we wrap up, I want to address one more kind of sticky issue, and that is, we've talked a little bit about treating autism.

Is it a condition? Is it curable? How do you look at it?

[Barry Prizant, PhD] (40:57 - 44:09)

Yeah. I look at it as a lifelong condition under which you might see people who have a wonderful quality of life. I have very accomplished friends, clearly accurately diagnosed on the autism spectrum, who have families, who have children, who have careers they're proud of.

They still might have challenges. The people that I know, the adults that I know who have the best quality of life are also the ones who are most self-aware. They can communicate what they need.

They can avoid the foods that might be physiologically dysregulating for them. They know how to surround themselves with people who get them. And that's huge.

I would say most adults with autism who you may not even know they're on the autism spectrum at times, okay, when you see them, they would say, no, autism and sepulchral grandness is a part of who I am and will always be a part of who I am. But that does not translate into a poor quality of life. That does not translate into needing a high level of support 24-7.

Now, some people definitely need more support. There's no doubt about that. I know people on the spectrum who need a fair amount of support, but they're happy people.

They're happy kids. And so it depends upon how you define outcome. All right.

And that's a very, very important consideration. I mean, you have people who are genius level, and by all measured assessments, you would say, oh my God, this is a brilliant person who's, you know, is so debilitated by anxiety that life every day is just hellish for them. Okay.

I knew a college professor like that who eventually lost his job on the autism spectrum. And I mean, the level of anxiety that he experienced every day just limited his ability to go into certain situations, to be with certain people. And he was misunderstood by a lot of people, you know, just as this eccentric recluse and don't go near him because his anxiety will spill over into you, you know.

So a lot of it has to do with the right supports, helping people be self-aware, supporting families, of course, from the get-go. That's, you know, one of the most important prognostic indicators is family understanding and family support in raising their family member or their child who's on the autism spectrum. But there are many other prognostic indicators.

And it's really getting a person, being highly sensitive to who they are, putting the right supports in place, and trying to the best that we can, if you're not on the spectrum, to understand their world. Very important.

[Andrew Wilner, MD] (44:10 - 44:14)

Barry, this has been great. Is there anything you'd like to add before we close?

[Barry Prizant, PhD] (44:16 - 44:56)

I would say, listen to what autistic people have to say. Listen, if you're in a position to work with families, listen to what family members say. That includes siblings.

They are a wealth of knowledge. And everybody really wants to be heard. You know, autistic people want to be heard.

Parents want to be heard. And so I always like to say, let's move out of an expert model, like I got all the answers if you're a professional listening to this, to a collaborative model. The best way that we work is holding hands together and moving forward together.

[Andrew Wilner, MD] (44:57 - 47:41)

Dr. Barry Prizant, thanks for joining me on The Art of Medicine. Andrew, thank you so much. It's been a pleasure.

And now a final thanks to our sponsor, locumstory.com. Locumstory.com is a free, unbiased educational resource about locum tenants. It's not an agency.

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Andrew Wilner, MD, is a professor of neurology at the University of Tennessee Health Science Center in Memphis, Tennessee. Views, thoughts, and opinions expressed on this program belong solely to Dr. Wilner and his guests and not necessarily to their employers, organizations, other group, or individual. While this program intends to be informative, it is meant for entertainment purposes only.

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