A talk with Barry Prizant (barryprizant.com), author of the influential book Uniquely Human: A Different Way of Seeing Autism, and co-host of the Uniquely Human podcast (www.uniquelyhuman.com). The focus of our talk is on understanding the experiences and behaviors of autistic people.
Topics discussed include: understanding the underlying causes behind the sometimes seemingly inexplicable behaviors of autistic children; the various types of experiences contained within the label of ‘autism’; the role that sensitivity to sensation and associated anxiety plays in autism; the question of how empathetic autistic people are; the causes of autism.
Episode links:
Links to ideas or resources mentioned in the talk:
- Barry’s book Uniquely Human
- Politico article about Ron DeSantis and autism
- “Double empathy” problem
- Podcast episode talking about the hidden complexity of being a conscious being
- The book NeuroTribes
- Following Ezra: book about having an autistic child
- Uniquely Human podcast episode discussing anxiety and polyvagal theory
- Elizabeth Bonker’s commencement speech
TRANSCRIPT
Zach Elwood:
Hello and welcome to the People Who Read People podcast, with me, Zach Elwood. This is a podcast aimed at better understanding the people around us, and better understanding ourselves. You can learn more about it at behavior-podcast.com. If you like this podcast, please leave me a review or rating on Apple Podcasts, or the platform you listen on: that is hugely appreciated.
On this episode, I talk to Barry Prizant about autism. Barry is the author of the well known and influential book Uniquely Human: A Different Way of Seeing Autism. He’s also the co-host of the podcast Uniquely Human, where they cover autism-related topics. You can find that podcast at uniquelyhuman.com, and find barry’s main site at barryprizant.com. His last name is spelled PRIZANT.
Barry’s book is fantastic: I read it years ago and was rereading it recently. Even if you aren’t that interested in autism, and are more just interested in understanding behavior, it’s a great read. A lot of the ideas in the book are related to behavior and reading people: part of the book is focused on better understanding the behaviors of autistic children, because so often people will write off the behaviors of autistic children as lacking meaning and being random, but Barry walks through a lot of examples of digging into the hidden causes and meanings behind various behaviors. And another focus is the difficulty autistic people have with reading neurotypical, so-called “normal” people: the things neurotypical people take for granted are alien and not obvious to autistic people, and a lot of the work autistic people do in their pursuit of communicating better with other people and fitting in more, is about trying to read people better; trying to deduce the things that others may take for granted.
I think you’ll like this talk a lot. Barry and I talk about the nature of autism; we talk about the huge range of behaviors and experiences that can be found under the label of ‘autism’; we talk about the causes of autism; we talk about the idea that some autistic traits are due to being too sensitive to stimulation and feeling overwhelmed; we talk about some examples from Barry’s book of reading the causes of some verbal and nonverbal behaviors of autistic children; we talk about Ron DeSantis, who some people think is a bit autistic; and along the way I talk a bit about some of my own autistic traits (including my discomfort with making eye contact that I had from a young age);
In this talk Barry and I reference quite a few books and other resources, and if you’re curious about some of those things, I’ll include links to those resources on the blog post for this episode on my site.
Okay, here’s the talk with Barry Prizant, author of Uniquely Human. Hi, Barry, thanks for coming on the show.
Barry: It’s my pleasure.
Zach: So, a big part of your book Uniquely Human and your work in general is about explaining the importance of asking ‘why’ when people are faced with confusing seemingly random behaviors of autistic people looking for the motivations and the hidden causes behind people’s behavior. And in your book, you include a lot of examples of these kinds of things, which is one of the things I found most interesting about your book from a behavior perspective. And I’m curious, what’s top of mind for you when it comes to some of the stories that you tell about the hidden causes behind autistic people’s behavior?
Barry: Yeah, I believe that one of the great injustices that happens with autistic people is they are misunderstood. So I give lots of examples and I continue to do so when I see people making assumptions about why an autistic child or an autistic adult reacts in a certain way. It’s important to ask what I refer to as the ‘deep why’ because very often there are so many assumptions that are made that are just simply inaccurate; such as a child, for example, being non-compliant. And the example I give in the book is a child that I’m walking with– a young child– outside, and he keeps dropping to the floor on the sidewalk. And it looks like well, he doesn’t want to go for a walk or he’s being uncooperative. When in that situation, it ended up that he has hypersensitive hearing and was hearing a dog in the distance and he was afraid of dogs. And there are just so many more examples I could give both of behavior that is nonverbal as well as the types of speech that is used, especially echolalia, which is the tendency to repeat speech. Sometimes kids will repeat things that they’ve heard and they associated particular meaning with that phrase. For example, many years ago I was working with a child and at the time on television, they had this commercial for a toilet bowl cleaner and it was called Ty-D-Bol. And he would sing the Ty-D-Bol song when he needed to go to the bathroom because he made that association. Some people just thought it was cute, okay? But it was really communicative. Unfortunately, many people on the spectrum develop idiosyncratic ways to communicate that very often have real meaning behind it but are seen as either meaningless or are seen as undesirable ways to communicate, especially when a child is dysregulated or upset.
Zach: One interesting story that I remember from your book is the child who would go around the classroom and would stare in people’s faces and make [duaa] sounds. Can you talk about that story?
Barry: Yeah, yeah. That was a young child, a five-year-old little boy, and he would come up to us and this was something we hadn’t seen before. And he would stare us in the face and say, “Duaa,” while opening his mouth wide and holding it open. And then if we didn’t respond, he’d go “Duaa,” again. So, we didn’t know what to do or what it meant. And this was very early in my career, I was working with a wonderful teacher who said, “Well, let’s call David’s mom up and figure out what’s going on here.” And so she did that during the lunch break and she said, “Oh, he must be getting a cold or feeling a sore throat. Because when I think he’s getting sick, I tell him to come over and open his mouth and do ‘a-ha’ so I could see if his throat is inflamed.” And he was clearly letting us know how he felt because he associated that phrase that his mom had said to him with not feeling well.
Zach: The anecdotes are just really interesting in your book and the ties between the things that children pick up from shows and movies and use that to communicate. You had one where a child liked to greet people with the phrase, “Are you a good witch or a bad witch?” Can you talk a little bit about that one?
Barry: Yeah, that’s one of my most favorite and delightful examples that a parent shared with me. This was a youngster who he was only three, but he had a lot of phrases that people call scripting. Actually, it’s an area of great interest now in my field in speech and language pathology called gestalt language processing. That is processing language and using language as memorized chunks. So he would come up to people, especially if he didn’t know them, and with his cute little posture he would kind of cock his head and say, “Are you a good witch or a bad witch?” And where that came from was the movie The Wizard of Oz! And if you go to a particular scene, it’s just after Dorothy landed in Munchkinland. After a house crashed in Munchkinland, there’s a little bubble in the air that gets bigger and bigger and bigger and when the bubble bursts, it’s Glinda the Good Witch of the North. And what does she say? She says to Dorothy, “Are you a good witch or a bad witch?” So what it seems like this little boy extracted from observing that was this is how you greet people. I mean, it’s a very profound greeting, you know? Here’s this person who comes out of a bubble and then greets Dorothy. And I’ll never forget what his mom said when we said, “Well, we should really help Jimmy maybe say, ‘Hi, I’m Jimmy,’ or ‘Who are you?” And his mom said, “Oh, but he’s so cute when he does that. Do we have to change that?” [chuckles]
Zach: Yeah. And like you said in the book, it really captures so much of the social interaction. When you meet people, you’re communicating and you really want to know, “Are you good or bad? Are you gonna be nice to me or not be nice to me?” You know? Yeah, so I love those anecdotes in the book. And I really like the general theme of asking ‘why’ about people’s behavior, which is just a general good strategy in life about everyone trying to figure out the hidden causes and not jump to conclusions about why people did something basically.
Barry: Well, and I think the bottom line is it’s respectful of other people. We do this all the time in interactions with anybody. We try to understand what their true meaning is, what their intentions are, and of course the neurotypical culture, we put on all these layers of masking and deceit and everything else that goes on. And the one thing that I’ve always enjoyed in my 50-plus year career, especially in my relationships with autistic people, is the sincerity and the honesty. But unfortunately, we went through many many decades of people just trying to make autistic children and adults look normal by changing their behaviour. And if we didn’t understand what somebody was trying to communicate or if it seemed to be idiosyncratic or we were confused, we’d always try to just fix that. And autistic adults are now telling us, “That was wrong. You need to understand… You have to understand my deep why.”
Zach: That can be traumatic and stressful to be forced to repress the natural inclinations and ways of being.
Barry: Absolutely. And if you want to take it to the next step, an area that I’m finding interesting that people are just beginning to talk about in autism culture is should we understand that there is a different culture of communication in autism not being interested in schmoozing and small talk? As you know, for many people, feeling uncomfortable and the social requirement of looking at people in the eye when you’re talking with them. So many autistic people are now saying all of this has been labeled as deficient in the past because it doesn’t fit neurotypical, especially Western culture. And I always like to emphasize, there are many cultures– and I’ve had students from Africa who feel very uncomfortable looking me at the time as a professor in the eye, and they averted gaze. And they would say to me, “It’s a sign of disrespect, I can’t look you in the eye because you are my professor when I’m speaking to you.” So a lot of this is culturally determined. But the point is that many autistic people are now saying, “This is not just random behavior. It’s something that’s common across many autistic people, which defines cultural differences in communication.”
Zach: Yeah, a quick digression there because I was going to get into it a little later, but yeah, I’ve always had problems with eye contact and I once did this video for an ex-girlfriend where she interviewed me for a class project, basically. And because of my lack of eye contact in the video, the teacher was asking her, “Is he from another country or something?” [laughs] He thought it was some cultural thing. So, let’s see. Do you see the autism label as containing a great amount of complexity and many factors and many types of experiences and ways of being in that label? Do you feel like the label itself is kind of flattening a wide range of experiences?
Barry: It’s a great question, and it’s a very complex question because the issue of the label of autism and how it’s applied and whether it’s helpful or whether it’s not helpful really depends upon who’s using the label. Just to give you an example, the formal diagnosis comes from the DSM-5, and that’s the American Psychiatric Association manual for diagnosis. And currently, the label is autism spectrum disorder. Okay? And many people, including myself, feel that in a sense it is very unidimensional because ‘disorder’ implies something that is pathological or wrong. So more people, including myself, are looking at or referring to autism more as a condition. Because condition is a more neutral term. Condition could mean well, there are some things that are helpful and positive and there are some things that are challenging. You know, many people in the past when you heard the word autism– and I’m going back a few decades now– when a family or a parent got a diagnosis for their child, autism meant hopeless child, there’s nothing we can do, so think about putting your child in some kind of institution. I’m talking about three, four or five decades ago right now. Whereas now, in part due to the media but even more so due to so many autistic self-advocates being out there writing books, giving lectures and speaking, we’re trying to change the concept which changes the meaning of the label to this condition that very often results in different patterns of strengths but also different patterns of challenges.
Let me just share a quick story with you. I do a podcast with a colleague who’s autistic, he’s an audio engineer. And we interviewed an Ojibwe autistic woman from the Ojibwe tribe. She lives in Minnesota, so it’s upper central US. She shared with us that in Ojibwe language, there’s no such label as autism, there’s not even a label for disability. And she said people are just respected for who they are and accepted and loved for who they are. And both in terms of their strengths as well as their challenges. And what she said was, “I do accept the fact that in Western, especially US Western culture, the label plays a certain function. You can’t get financial support, whether it’s medical support, whether it’s psychological support or educational support without the diagnosis.” So when we talk about the label and the pros and cons of the label, it really depends upon… You know, I’ve met many people who say, “Well, I’m pretty sure I’m on the spectrum. As an adult, I never got a diagnosis. Should I seek a diagnosis?” And my question then is, “What do you think that would do for you? Would it be helpful? Would it not be helpful for you?” And many people feel… I feel, by the way, I skew towards, “Yes, do it.” Because then you could find your tribe, you could find your community. And it helps other people who are in the know to be more understanding of how you’re reacting and how you’re behaving. But the point is that the label in and of itself, getting back to your question, is very complex simply because people have different meanings for the label and apply it differently.
Let me give you one more example that’s very contemporary. Ron DeSantis, who is one of the Republican candidates challenging Trump, apparently many people who cover him (I’m talking about journalists) they talk about the fact that they think he’s autistic. Okay? And they say that because in informal situations– think about your traditional politician going to a restaurant or a diner in the morning when people are having breakfast and shaking hands with everybody– that he comes across as very uncomfortable. He says things that are a little bit off-topic. And then something strange that I read about, that when he’s not wearing his formal suit and tie, that the combinations of the clothes that he chooses are a little bit idiosyncratic and off. Okay? And by the way, this is based upon an article that was published in Politico about three weeks ago. I was interviewed for that article. The author of the article was saying, “I don’t like the fact that some of my colleagues refer to him, “Oh, he’s just autistic that’s why he reacts that way. Because they only see it as negative. They’re only looking at what they see as negative.” And so the article was about we got to get away from using a descriptor of autism only in reference to negative attributes or what’s perceived as negative attributes. It’s a wonderful article. And basically, it says, “Stop it!” And he said in the article, “I need to tell my colleagues to stop using the word autism to characterize a person who seems to be socially uncomfortable, or who does things in a way we don’t expect a politician to behave.” That’s a really good example of the complexity of the term and who is using it and how it’s being applied.
Zach: You’ll now be hearing an ad. I don’t endorse these ads, and I encourage you to remain skeptical of all ads.
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Zach: Right. It seems like we sometimes culturally just really like labels way too much in the sense that not just labeling other people, but also we like to label ourselves too and that can be sometimes kind of self-limiting too. Maybe the healthier way to look at things is that these are just rough labels that we use to describe certain aspects of human ways of being and they can be very rough and be on the very complex multi-dimensional spectrum that’s really hard to describe, and we’re just trying to give these rough labels to these rough assemblies of traits and behaviors. I think the more people embrace that way of looking at things, the better and healthier it gets.
Barry: Yeah, and one other point that I didn’t make that was inherent in your question is that even autistic people that I’ve known– and I’ve known many, and I collaborate, write with, present with many autistic people– they may focus on different aspects that everybody would agree often occurs in the autistic brain. So some people will talk about sensory sensitivities and how to build stating it is when there are loud noises or a visually complex environment. Other people will talk about the issues they feel challenged by for example in conversation. A young man once said to me, “Entering a conversation that’s free-flowing and open-ended is like stepping onto a minefield for me because I’m afraid I’m going to say something that’s inappropriate and wrong and I won’t even know it.” So even autistic people I find, as well as non-autistic people, sometimes focus on specific aspects of what we know is part of the autistic experience as opposed to other aspects. And that’s their personal experience.
Zach: Yeah, that’s kind of what I was trying to get at, just the tremendous range of experiences. For example, I’ll take myself I’ve always had trouble with eye contact, it almost physically pained me from a young age. But I don’t have a lot of the experiences that other people have that get described as autistic. That’s kind of what I was getting at is just this tremendous range of human experiences that get lumped under this simple descriptor. Yeah.
Barry: And a big point of my book is that it also blends into experiences of neurotypical people. Now, I want to say right up front, I don’t like when people say, “Well, there’s a little bit of autism in all of us.” I think that kind of dismisses the special experiences and challenges. But let me just give you an example in my 35-year relationship with my wife and my marriage. I like more alone time, okay? I don’t like going to parties with people I don’t know, especially if I’m not in the mood at all, to just schmooze. My wife, I like to say she has an overabundance of social genes. She will strike up a conversation with anybody. I mean, in a line at a theatre, a person shopping next to her in a market… Whereas for me, I just prefer to kind of go my own way and go ahead. So very often, she will go out and do things socially. Finally, she gets comfortable with that. [chuckles] And I’ll say, “Listen, [inaudible 00:21:45] mood just to hang out with people I don’t know and try to make like I’m having a phone conversation with them.” So there is some blending. I’m focusing on the social piece here in terms of how reticent you are socially, or how outgoing you are socially. And I think it’s based on our brains. I really think that for my wife, when she engages socially with people and gets to know new people she’s never met and have long conversations, I think her brain’s lighting up like a light bulb. It’s feeding what she loves to do. Whereas for me, I feel a little bit of that mild discomfort and stress. Not to the extent that autistic people report feeling that, but I feel like it’s just not worth my effort right now, or I really need to be in the mood, or I need to have a couple of gin and tonics in me and then maybe I’ll go along with that. [chuckles]
Zach: Yeah, it’s kind of like getting into the spectrum of introversion and extroversion areas.
Barry: Exactly.
Zach: Maybe that’s a good segue into… I was going to ask you obviously a hugely complex question, but do you have your thoughts on what you see as the causes of autism? For example, the biological wiring aspect of it, how do you see those things playing a role?
Barry: Yeah, I always like to begin with the caveat that I’ve not studied the neurology of autism as a researcher and I’m certainly no expert in that area. I do like the metaphor of we’re talking about a brain that’s wired differently and that communicates to different parts of the brain that communicate with each other differently. To help explain, in some cases some of the great strengths– for example an episodic and rote memory for some people on the spectrum, almost photographic memory eidetic imagery. For some people on the spectrum, exceptional ability in music, perfect pitch, which I think is more common in autism than in the general population… I think certainly there are brain-wiring differences. The question is, how does that happen? And of course, you’re very familiar with the fact that it is now accepted that at least for some people, there’s a very strong genetic component. It is not uncommon for me to do a school consultation on let’s say a seven-year-old little boy or little girl, clearly accurate diagnosis of autism. And then the parents come in and the dad not only has some characteristics when I meet with the parents, but in many cases the dad– more dad than mom– the dad will say to me, “I wasn’t so different when I was young and I think I understand why my son does what he does and how he reacts. Do you think I could be on the spectrum?” That’s one of the biggest issues that’s happening right now with all the undiagnosed people, many of whom become self-diagnosed or diagnosed as adults. So I do believe there’s a genetic component, not necessarily on all people on the spectrum, but I think for different reasons there are wiring and brain function differences. And many autistic people describe themselves that way right now. “Well, my brain’s just wired differently.” And some people actually suggest let’s describe it that way to kids. It’s not that you have brain damage, it’s not that there’s something wrong that we need to go in as a neurosurgeon and fix that, let’s just understand that we all have different brains and your brain has a particular pattern of functioning. Which is the underlying premise of the whole concept of neurodiversity.
Zach: A small note here just to give an example of the kinds of theories there are about biological mechanisms involved in causing autism. Some studies have shown some evidence that autism may be caused by a lack of normal pruning of synapses in the brain when young. Basically, a neurotypical non-autistic brain goes through a process of trimming a lot of excess brain synapses. And some research has suggested that that is not happening properly during brain formation in autistic people. It’s an interesting theory because it kind of makes some intuitive sense because it would theoretically help explain being overly sensitive to sensations and maybe an inability to combine so many sensations into a coherent narrative. It might also explain some of the more savant-like traits correlated with autism. There were a couple of studies I saw on this one from 2014 and one from 2021 on this idea, and maybe more that I didn’t see. Also, it was interesting because there was some similar theorizing a while back about improper brain synapse pruning playing a role in schizophrenia. I don’t think much ever ended up happening with that theory, though, from what I know of.
Okay, back to the talk. Kind of related to what you said, there’s a theory that seems pretty controversial that the upswing in autism diagnosis is related to more autistic people maybe having children than in the past. The modern world’s made it easier for more autistic people to find a mate and so forth. And I’ve seen that. I once shared that theory on Twitter and I had people get angry at me because apparently it’s controversial. And to me, it didn’t seem that controversial in the sense that if I had a child and they were autistic, I might be like, “Oh, yeah, I can kind of see how that happened biologically.” And it didn’t seem that controversial to me. I don’t know if you have any takes on that particular theory.
Barry: I don’t know how people responded to your post on Twitter, but I think one of the reasons it might have been controversial to people is one of the major arguments is that there is not a significant uptick in the reality of autistic people. Autistic people have always been here on this Earth in the same numbers as always going way way back. What’s changed is that we are recognizing more subtle characteristics that fit under an autism description. And that, in part, is proven by the fact that we have more late-diagnosed and self-diagnosed people than ever before. And when you say self-diagnosed, many people right away think, “Oh, well, they take one little characteristic. They’re really not autistic, but they call themselves autistic.” Actually, that’s not the case. I believe some research has demonstrated that in people who self-diagnosed as autistic when they go for a clinical diagnosis, 90% of the time it’s accurate. So, that’s possibly part of the controversy. And some of this comes out of the well-known book by Steve Silberman who’s become a good friend of mine over the years, NeuroTribes, where he makes the claim based upon he’s a science writer so he studies the history of science. He says, “I’m not an autism expert but I studied the history of autism and also the pre-history of autism, looking at historical biographies of people who were clearly autistic in the 1600s, 1800s and so forth.” And he put forth, “Autistic people have always been here in the numbers that we have them now and the numbers that we’re seeing.” Another reason by the way, again it’s another rabbit hole we could go down, is that it’s believed that women on the spectrum really have been missed. Because they may actually have a very different presentation than men on the spectrum. And they mask more. They’re more successful at masking their autistic traits. Traditionally it was considered to be a five-to-one ratio or a four-to-one ratio male to female, and now some people are saying maybe more like two to one. And we’re talking about biological because the gender fluidity is a big issue in autism now as well. And some people are saying, “No, we believe it’s one-to-one. There are as many autistic women as there are autistic men.”
Zach: Yeah, I think another aspect of people getting angry about that idea was they felt like it was blaming them like the parents of… Whereas that’s obviously not what it’s saying. It’s not saying that every… You know? There’s no blame involved and it’s not even saying that the parents are autistic, it’s just saying that could be one of many factors involved anyway.
Zach: If I could share another story, and this is from the second edition of my book, because the second edition came out about a year ago and I added a lot more information about adults and new stories. I told the story of John Elder Robison, who many people know is one of the best-known and respected self-advocates in autism and neurodiversity. He wrote the book Look Me in The Eye. I saw him at an autism conference a few years ago and he was standing by a woman who had a baby carriage. He obviously knew the woman and she’s autistic, and she was with her baby. So he was talking with her and he looked into the carriage and said, “Oh, your baby’s so cute. I’m sure she’ll grow up to be a fine young autistic woman.” And I gave that as an example of how the culture is changing. That the last thing any parent wants to hear in the past was, “Oh, your child is autistic.” And this mother was celebrating her autistic… I think the daughter was six or nine months old, I forget exactly what it was. And here’s a well-known brilliant autistic man celebrating with her the fact that she is raising an autistic daughter. Okay? That speaks against what you had said as far as how things are changing. It wouldn’t be blaming. In this case, it’s saying, “Hey, due to your autism, you have this wonderful little daughter who’s going to be autistic.”
Zach: Yeah, I feel like culture is really changing quick these days because of the internet and how connected we are. Everything seems like it’s on a very fast-moving track for whatever changes we could discuss here.
Barry: Very true.
Zach: I wanted to ask you about, you know, there’s often the perception that autistic people can be kind of shut down emotionally or lack empathy or lack these things we think of as normal social emotions, whereas some other research or observations show that actually autistic people can be overwhelmed and too sensitive to these kinds of things. For example, with my eye contact avoidance, I always found it super intense and painful to make eye contact from a young age. I wonder if you can talk a little bit about that kind of divergence in the public’s perception versus what’s actually going on with the sensitivity or the empathy and things like that.
Barry: Yeah, that’s a perfect example of getting back to your first question about the ‘deep why’. I definitely fall into the camp unequivocally about autistic people being too sensitive. And to a large extent, it comes from what I’ve learned from autistic people, both in our podcast (we’ve interviewed probably 60 autistic people), my personal relationships, my friendships with autistic people. I see it definitely as a sensitivity to how am I doing. And the issue of self-esteem that I believe you want to talk about as well, it’s been drilled into so many autistic kids that, “You’re screwing up, you’re getting it wrong,” that comes out of self-esteem or it comes out of in terms of the difficulty in social interacting or preferring not to seek out a lot of social interaction, especially with unfamiliar and strange people. I don’t see it as a lack of motivation or a choice to be shut down, only in the sense maybe that ‘this is too difficult for me and I feel more comfortable just not doing that.’ I know many autistic people who are very outgoing. I know autistic kids that I call them little politicians. Because they go up to everybody and they’ll say something like, “Oh, hi, I’m Steven! What’s your name? Hi, I’m Steven, what’s your name?” And usually, those kids have much more of a sense of confidence and of self, if you will. It’s a tough situation but it gets back to the ‘deep why’?
Getting specifically to the issue of empathy, you might be familiar with what is called the ‘double empathy problem’ right now. And that is for so many years people saying autistic people can’t take the emotional perspective of another person, which is what empathy is, and respond empathically. Well, what we’re finding is that autistic people very often do respond empathically but not necessarily the same way that a neurotypical person might. For example, an autistic person might– and again, I’m learning from my friends who are autistic– might feel very upset internally if they see another person in pain or having difficulty. But they don’t know what to do about it. They don’t know how to reach out to help that person in that instance. The double empathy problem is if we can’t, as neurotypical people, empathize and understand the perspective of an autistic person, why do we just focus on their behavior that seems they can’t empathize with other people? So the double empathy problem is, “Wait a second. It goes both ways. We’re not very good at understanding the experience of an autistic person, and they may be not that good at understanding our experience because we come from different cultures and different life experiences.” So I think it’s clearly been pretty much dashed as a generalization that autistic people can’t empathize with others. And some are very highly sensitive to the experiences of other people.
Zach: There’s some presentations of autism that the more catatonic or rocking presentations that I think have made people in the past make assumptions that this person is cut off from the world or they’re lacking in these normal sensations, whereas you can see that those kinds of behaviors as a defense mechanism kind of shutting down to deal with overwhelming sensations and such.
Barry: Exactly. The point you’re raising right now has to do with self-regulation. That very often autistic people will do things in many different strategies when they are feeling overwhelmed, when the neurological system is beginning to ring alarm bells that if a person is sitting there rocking averting gaze, it could be this is my attempt to try to deal with the anxiety or the sensory overwhelm that I’m experiencing right now. And think about this, think about neurotypical people. If you have a neurotypical person who’s feeling very distressed, highly, highly anxious and just unable to cope, you can’t empathize with people under those circumstances. So to the extent that some autistic people may look like they’re engaging in behavior that’s shut down behavior, it actually might be. But it’s not that I don’t want to be with you or empathize with you, it’s that I need to do something to hold myself together so I don’t have a total meltdown and I don’t lose it altogether.
Zach: You’ll now be hearing an ad. I don’t endorse these ads and I encourage you to remain skeptical of all ads.
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Zach: I thought I’d give you some thoughts that I’ve had about autism and maybe you can just shoot some holes in it or give me your thoughts, so I’ll go on a long ramble now.
Barry: Okay.
Zach: This relates to some things I’ve covered in past podcast episodes because I’m interested in existential psychology. There can be these just fundamental aspects of just being a conscious being in the world that result in a lot of the ways of being that we consider unwell or unhealthy or not normal. We have these, quote, “normal social skills” and part of these social skills is involving a tremendous amount of complexity. We have to keep track of our own minds, we have to keep track of other people’s minds, we have to keep track of how they perceive our minds. We have to juggle all these concepts of various minds, and we also have to have a model of the world that we reside in and we have to place all these minds in it. And just to say that these so called normal social skills that we have can seem so easy to us, and we take them for granted, but they mask so much huge complexity.
And I talked about this in a past episode about AI and consciousness, about the hidden complexity and creating what we would perceive as a thinking, conscious being. There’s just so much hidden complexity I think, personal, I think we’re born with, to some extent, with this wiring that helps us with that, the normal social skills. Then we’re socialized in ways that help us with that, too. You could have normal wiring, but you could have some abnormal socialization as a child that can result in degradation or harming of your normal social instincts and skills. It seems to me that autistic people might be born without some of these wiring in various ways. Just to say that there can be this tremendous amount of ways that these things can go wrong and it can prevent us from forming these normal modeling of this mind over here, my mind, the world, world. And so all these things can go wrong in various ways that can lead us to the symptoms, the ways of being that are classified as autistic. And I’m curious, what are your thoughts on all that?
Barry: Yeah, what you’re actually describing, let me give you another if you will, lens to look at that, which is very consistent with what you said. Ami Klin, who used to be the head of the Autism Research Center at Yale University, he’s now at Emory University, an important person in the field of autism, published a lot initially when Asperger’s was still a diagnosis. And Asperger’s still very active. A number of years ago, I heard Ami describe the basic challenge in autism socially has to do with a lack of social intuition. The neurotypical social brain, to varying degrees, because it varies greatly amongst neurotypical people, has this natural intuition to almost pick up on very subtle social queues, to automatically try to think about what another person is feeling, and it isn’t so conscious.
So for example, we might be speaking to somebody at a social engagement, and we say something and we notice that the person’s lips tighten up in the corner of their mouth. Right away, we might think, oh, they disagree with what I’m saying? And especially if it’s not a smile, if it’s a tense time tightening. And then we might change what we’re saying or ask them, “Oh, I’m sorry, did I say something that was insulting to you?” Or whatever how we might respond. Whereas many autistic people say, and again, I don’t generalize for everybody, say, I don’t pick up on those very subtle social queues. And it doesn’t come naturally to me to think about what another person is feeling when I’m talking to them. So that could be due to the difference in why hearing of the brain, the social brain. Like I said, my wife just naturally knows how to extend the conversation with a total stranger, where if I’m speaking with a stranger, sometimes I’ll get a little bit, not so much anxious, but like, Okay, well, we’re hitting a dead end. What do I say to keep this going? It becomes cognitive and conscious. And I think what you describe as juggling so many things, different concepts of minds, what’s the context? Many autistic people say that social interaction for them becomes a cognitive exercise. It’s not a socially intuitive exercise.
Let me just give you some examples from our podcast. Carly Otte, a wonderful woman who I’ve gotten to know personally over the years on the spectrum, she happens to be a bank vice president. She was diagnosed in her late 20s and actually had some very significant mental health issues at that time until she got her diagnosis.She talks about the fact on our podcast about how in a shower in the morning, she will rehearse lines that she needs to say that she thinks she will need to use with certain people throughout the day. So that’s taking what should be, what most neurotypical people believe, should be a very spontaneous natural reaction and social interaction. I’m not talking about a job interview because everybody rehearses and what do I say to that person to impress them to get this job? But she says even for everyday conversations, it has to become a cognitive activity. She needs to think about strategies, learn those strategies, and then apply those strategies. Whereas most neurotypical people will say, “Hey, listen, if I bump into a friend at the supermarket, Hey, how are you doing? How’s your family? What’s going on?” It flows more naturally because it’s intuitive. It’s not that a cognitive exercise. And that makes a lot of sense to me. Again, it’s a different way of being.
Now, let me give you an example of how it could be very different with an autistic brain in a social interaction. So I was out in LA less than a year ago. And I was having lunch with my friend who actually is a with-author of my book, Uniquely Human, Tom Fields Meyer. And he has an adult son on the spectrum, Ezra. And he actually wrote a book when Ezra was young called Following Ezra. It’s a wonderful book. So Ezra Fields Meyer, and Ezra has a podcast and he loves Disney, he knows everything about Disney. If you tell him your birthday, he will tell you the Disney film that came out closest to your birthday. So he has some savant skills in those areas. So we’re seated outside in a restaurant in Santa Monica, near a corner where there’s a lot of traffic. So I’m having a conversation with both Ezra and his dad, Tom. And then a bus comes by and the bus has a circular on it about maybe the play Frozen or the movie Frozen. And he immediately left the conversation and his brain riveted, “Oh, there’s a poster of Frozen! It’s playing at so and so theater.” And then he started talking about all the characters. So his mind intuitively, almost, went to what was a passion of his and something that he knew a lot about.
And it wasn’t that he was disinterested or avoiding our conversation. It’s just that his brain naturally, almost intuitively, went to something that he loves to talk about and that lights his brain up, if you will. And I think for neurotypical people, that happens in free flowing conversations much, much more easily than it does for autistic people. So I like that concept of social intuition that if we think neurotypicals have more of a social brain, which by the way, has it’s downside in terms of for example, with my wife, I often say I don’t want to get involved in these long conversations with people I’ll never meet again. It’s not relevant to my life and what I want to do right now. So I try to pull her away from that because sometimes it’s a problem that we end up being late for things and other kinds of stuff. So anyway, I like that concept of social intuition, or less of a social intuition, not from a pathology perspective, but from a brain difference perspective.
Zach: Yeah. And I like to think about it in the existential psychology terms of there’s many different ways of experiencing the world. No matter how it comes about, there are understandable ways that a conscious being can experience the world whether it’s whatever causes we could look into. You can understand it as a way of experiencing the world. I can really relate to that.
The cognitive aspect, from a young age, I don’t relate at all to the whole concept of having rapport with people and all that. Those aspects were totally off the table for me from a young age. My way of being in the world was basically just trying to simulate what people perceived as normal. It definitely felt like a cognitive effort which can lead to all sorts of anxiety and depression. I dropped out of college in my second year, midyear from basically a so called nervous breakdown, but it was basically just extreme anxiety and feeling socially inferior and horrible. Just to say that, yeah, these things can be related.
Maybe that’s a good segue to someone you had on your podcast who was an autistic therapist, and I can’t remember his name, but he talked about his beliefs that so much of what people view as autistic behaviors were various results results of just being anxious, having high anxiety. I thought he made some really good points about how when anyone is overwhelmed and highly anxious, they can behave in ways that seem autistic. You’ll be unable to act in ways that seem socially normal to other people, shut down or engaging in self soothing behaviors of various sorts. I’m curious if you have more thoughts on that idea that there can be a difficulty in drawing a line between what’s just signs of anxiety and the things we think of as autistic traits. They can feed off each other in various ways and have a feedback mechanism.
Barry: Yes. That professional was Sean Andrew Bitson. Sean is an autistic mental health counselor. What he’s pulling from, not to get too technical here, but is related to what’s called polyvagal theory, and I do believe that there is a big contribution from polyvagal theory. It’s the notion of our neurological system, very often is hyper vigilant, especially when we feel challenged and could put us in fight or flight reactions. And what Sean and I were talking about actually is very much related to our work going back decades. And a theme of my book as well, there’s no such thing as autistic behaviors. That what we’re seeing are human behaviors that are reactions to extreme anxiety. So you gave the rocking example, it might be pacing, it might be self-talk scripting to oneself to try to stay well regulated. That so much of what’s been labeled autistic behaviors are often related to more extreme experiences of anxiety, of fear, of great elation.
You could see children on their toes jumping up and down and flapping their hands, which many people would consider classical autistic behaviors. And it could be a person is just so excited and so happy, they just don’t know what to do, and that’s how they let out their energy. So I do believe that that is a major contribution. I think in terms of explaining all of autism and the way people react who are autistic, I don’t believe it does that. I believe what it contributes to is more extreme levels of experience that our neurology is reacting to. That in terms of the polyvagal theory is that we do have these neurological alarm bells that go off that put us into fight or flight, but at milder levels that tell us we need to do something to regulate ourselves physiologically and emotionally. And then, by the way, another interesting concept that’s developing, and a number of autistic people are saying this, and that is it’s not so much as an autistic person that I experience emotion the way you experience it, such as happiness and fear. And what I experience is more energy levels. So I know I’m about to have a meltdown when my energy is depleted, when I’m running on fumes.
So Jacquelyn Fede, who is an autistic psychologist, she works with one of my colleagues in their initiative called Autism Level Up. Jacqueline says, No, the way you describe emotions, I don’t experience that. But I experience different levels of energy, which could be positive energy, which could be negative energy, which could be I just don’t have any energy for this anymore. I’m running on fumes right now. So that’s, again, an example of how an autistic person might experience something differently than a person who’s not autistic, but we try to fit it into the neurotypical paradigm.
Zach: One thing I’ve wondered, is it possible to predict how highly autistic children will turn out? I know of children or hear stories with children who can barely speak, who have horrible temper tantrums, who can’t communicate. I often wonder, how will these people turn out? Is there a lot of variety? Is it hard to predict or do we know enough where examining someone, a child, you can accurately predict what their outcomes will be, whether they’ll lead so called normal social lives and such?
Barry: Your question begs the question of what do we use or what would people who want to predict outcomes, what would they look at in a child? And traditionally in Western culture, it’s been speech and language abilities and cognitive problem solving abilities. Well, one of the great turnarounds that’s happening in autism right now is we’re discovering that many people who are considered to be severely autistic, intellectually disabled, non speaking are ending up, when provided with appropriate ways to communicate, that still might be non speaking. So it could be low-text systems such as spelling boards or picture systems, high-text systems such as using speech generated output on an iPad or a MacBook or an iPhone. We are discovering people who are not only much more intellectually capable, but in some cases, quite brilliant who don’t speak.
We have interviewed now three people on our podcast. One has not come out yet. Let me just focus on Elizabeth. Elizabeth Bonker is a non speaking autistic person who was considered for many years to be severely intellectually disabled. Given appropriate systems to communicate, she showed how not only bright but brilliant she was, and she was the valedictorian of her college last year. So if our listeners, your listeners, want to look that up, just go on YouTube and Google Elizabeth Bonker, B O N K R valedictorian. And you will see the amazing speech she gave, all of which she programmed into her computer. So we interviewed her. It’ll probably be out next month or the month after we interviewed her a few weeks ago for our podcast. She asked for the questions ahead of time, and she programmed all the answers into her computer. She’s a delightful young woman. She’s in her mid 20s right now.
Another woman, Jordan Zimmerman, was not only considered severely autistic and severely intellectually disabled, but a profound behavior problem who literally attacked people, trashed environments, was considered so profoundly impacted by her intellectual disability or autism, she was always in highly segregated settings until she was a teenager. And she learned how to communicate through her iPad. And she also recently graduated with a master’s degree in educational philosophy. The bottom line is there are a number of people now, and a few years ago, it was a few dozen. Now there are hundreds of people with an autism diagnosis who are considered to be profoundly disabled by their autism, and in many cases, intellectual disability because they were not speaking, who are proving the world different. As a matter of fact, there’s a film that just came out called Spellers. It just came out a couple of months ago. It’s online and anybody could watch it, which is case studies of six of these people, including Elizabeth Bonker. And it’s turning our heads around. We always knew that a non-speaking person can be much more capable than we thought, but we never really realized how an early picture of a child could change so dramatically once they’re given the capacity to communicate effectively.
Zach: Kind of reminds me of Helen Keller’s book describing how her teacher taught her language and gave her the ability to communicate. And before that, she was just trapped in a dark world where it was very chaotic. You know when we learn ways to communicate, that’s hugely important to people. And if they don’t have the chance to communicate, that can be very traumatic and lead to worse things.
Barry: As a matter of fact, Elizabeth Bonker cites Helen Keller as one of her heroes in her valedictorian speech.
Zach: Nice. Helen Keller’s book was amazing. I read that pretty recently. Let’s see. I’m curious. Part of the stereotype or cliché about autistic people is that they become very interested or even obsessed with various ideas or pursuits, the Asperger’s thing of becoming very interested and obsessed with various pursuits, do you have thoughts about the causes of that association? For example, there could be the wiring aspect, obviously, for the more savant abilities. But do you think some of it could be because autistic people lack the meaning in social connections and social narratives and such, and so they have more of a drive to find their meaning in pursuits of ideas and concepts and math or whatever it may be. Do you see some connection there in the finding of meaning in non social things?
Barry: Yeah, that’s a great question. From a neurotypical lens, I would say, in addition to finding meaning, it’s finding quality of life. I mean, any person would have a better quality of life if he or she could focus on what’s fascinating to them, what lights their brain up, what rivets their attention. And just to be clear, it’s estimated that the true savant exceptional abilities are present at about 10 to 15 % of autistic individuals, more so than any other condition and more so than in the general population. But certainly, the terms deep interests, special interests, in my book, I refer to these as enthusiasm. And I think it serves a number of functions that in some cases, it might just be highly intellectually satisfying to a person. The same way that may happen to a neurotypical person, but what’s often mentioned in autism is that it might be more restricted to particular topics and particular interests for a person on the spectrum. So I believe it serves the function of emotional regulation, that when we are highly engaged, our mind is immersed in something that’s interesting to us, that’s fascinating. That’s when we’re in the zone.
The Czechoslovakian psychologist, Csikszentmihalyi, spoke about being in the flow. And the flow is being in this cognitive state where you’re highly, highly focused. Your brain is just clicking with what you’re doing and the activity you’re immersed in. It believes elite athletes get into that zone when they’re doing what they do that’s so good, an artist, a musician. So I do believe that it serves various functions. And a big part of what we do in education and our model, we have a educational framework called the SCERTS model. And a big piece of that is making sure that we put into people’s lives what their special interests are. Be creative, teach academics through, you know, if a person is very interested in aspects of science, teach academics through that. If a person is very interested in cooking and recipes, you could set up whole activities where teaching literacy skills and numeracy skills through that. The other piece of this is that sometimes if something falls outside area of interest for an autistic student, for example, or is just too abstract, that student is not going to learn that just to please the teacher. If it doesn’t light their brain up, they’re going to look for something that does, if you will. So I think that’s another important consideration.
But I believe, in my experience, we do see those intensive interests more often in autistic individuals than in the neurotypical population. If it is seen in a neurotypical person, then hopefully it’ll be nurtured. It might be a great skill, a great area of knowledge, a great talent. It could be science, it could be the arts. And that’s where we are right now in supporting autistic people, both at the level of leaving school into employment as well as at the level of school. Even at the level of social connection connection, we believe the best way to help, for example, an autistic child who has difficulty connecting with the uncertainty of social interaction, have experiences with friends who have similar interests. Because then they could both the non autistic and the autistic kids could focus intensively on something they both love. And it allows for that what’s referred to as shared attention and joint attention.
Zach: Well, this has been great, Barry. Thanks so much for your work and thanks for coming on to talk about all these things.
Barry: It’s been a pleasure, Zach, and great questions and I’ve really enjoyed it.
Zach: Thank you. That was a talk with Barry Prizant, author of the great book on autism, Uniquely Human, and co-host of the Uniquely Human podcast, which you can find at uniquelyhuman.com. His main site is at barryprizant.com. One area I didn’t get a chance to get into were some questions I have about how some psychological issues might overlap with autistic traits. To take an example from my own life, I had a very bad panic attack my first day of high school. I became extremely self-conscious and anxious that day as I was meeting a bunch of new people. And that panic attack was so painful and disorienting, it kicked off a long period of depression and anxiety for me. And I don’t have much insight into what my personality and inner life were like before that point in time. It’s like I became a completely different person at that moment of the panic attack. It was like suddenly becoming self aware, a real existential crisis of sorts. Suddenly seeing myself from the outside and feeling completely inadequate in dealing with all these other people around me. I don’t remember if, for example, my problem with eye contact was present before that point in time, or if maybe it was present but just not as bad or what. Just to say all these things make me wonder about all the various factors that can be present for these kinds of things.
Maybe other environmental or psychological factors created the conditions for me to be prone to be highly anxious, and that in turn kicked off or worsened some autistic life conditions and traits I already had. Or is it possible I don’t actually have the biological and brain wiring aspects that some other people with the autism label have? And my own problems are due more to anxiety and depression kinds of things. These things seem really hard to tease apart because, for example, if one has some biological autistic aspects that make it hard to interact with others, that person will often end up being depressed and anxious, and vice versa. If one winds up feeling self-conscious and anxious and depressed for other reasons, more psychological reasons, then one might often end up having traits that seem autistic.
Anyway, this is just to point out the huge complexity that I see in these things, mainly for the less extreme and more moderate kinds of autistic-seeming traits. And these are reasons why I’m not a big fan of using labels, at least labeling oneself internally. I think labels can be self limiting and oftentimes cover up a huge amount of complexity and uncertainty about things that we just don’t understand. I think there are certain ways of being that we can wind up in from multiple paths just because there are only so many ways to be a functional person in this world. This isn’t to say the autism label isn’t meaningful. I think it’s useful for describing clusters of traits and ways of being, especially when those things are on the more extreme side. I’m just talking about how we think of ourselves internally.
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