Is it Autism? (with Dr. Donna Henderson)

In this enlightening conversation with the brilliant Dr. Donna Henderson, we delve into a topic that's close to my heart: autism. We attempt to debunk common misconceptions, discuss the true prevalence of the condition, and explore the challenges faced by those living with autism. Dr. Henderson also shares insights from her new book, "Is This Autism?" and offers an in-depth look at the key criteria for diagnosing autism. Whether you're a parent, a teacher, or just someone looking to understand autism better, this episode is packed with valuable information.

[00:41] - The common misconceptions about autism and the prevalence of autism.

[08:55] - A personal anecdote about having an autistic daughter and the challenges she faces. Dr. Henderson explains how autism is a "neurological mismatch," not a character flaw.

[11:26] - Discussion on the unique challenges faced by autistic individuals in social situations and the criteria used to diagnose autism.

[15:05] - A case study on a student with autism and how his condition impacts his social interactions.

[18:13] - Evolution of autism symptoms over time and whether individuals can "grow out" of it or learn to mask it.

[20:33] - Conversation about unique habits of autistic individuals, such as flexing toes in shoes during intense situations.

[26:05] - Dustin Hoffman's portrayal of an autistic character.

[34:20] - Discussion about the emotional and cognitive taxing that socializing can have on autistic individuals.

[28:09] – I share my experience as a boy with physical symptoms.

[41:46] – Cautionary tale about making presumptions about another person’s autism diagnosis.

[48:34] - Importance of educators being curious and open to learning about their students' unique experiences.

[49:38] - Dr. Henderson discusses her book, "Is this Autism?"

[50:01] - I share my experience as a parent.

Links & Resources

·         Dr. Donna Henderson's Website: https://www.drdonnahenderson.com/ 

·         Is this Autism? Book Website: https://www.isthisautism.com/ 

Thank you so much for tuning in to this episode. If you found it insightful, I urge you to share it with others. And hey, if you enjoyed it, please don't forget to rate, follow, and review our podcast. Your support means the world to us. Until the next time, remember to love your kids and stay curious!

If you have a high school aged student and would like to talk about putting a tutoring or college plan together, reach out to Ned's company, PrepMatters at www.prepmatters.com

Transcript

Dr. Donna Henderson: 0:49

So many people are just trying to understand themselves parents who are trying to understand their children. And some of these kids who are autistic and don't know it have had one diagnosis after another, or one clinician after another saying it, I'm not really sure, or it's just ADHD or just anxiety. And I just think there is something so unbelievably life changing about finally putting all the different pieces together, and fully understanding and it changes the narrative, it changes the narrative of that individual, and how they see themselves, and they can separate their neurology from their character. I just think it's so unbelievably important.

Ned Johnson: 1:31

Welcome to the self driven Job Podcast. I'm your host, Ned Johnson, and co author with Dr. Williams pictured of the books, the self driven child, the science and sense of giving your kids more control over their lives. And what do you say, how to talk with kids to build motivation, stress tolerance, and a happy home. as parents and as educators, we work really hard to understand our children and other people's children. And we also work hard to help them understand themselves. One of the more interesting things that for me, as an educator I've been trying to wrap my brain around in recent years is autism. And there's a huge body of literature about what we know about autism. And it's, it's accelerated, and it's changed. And I think a lot of the stereotypes that listeners may have of what a stereotypical autistic person looks like, rooted in movies and television, and maybe limited experience of people who we, we knew to be artistic. But the reality is something close to 3% of the world's population has autism. And the really interesting challenges, people who are artistic, who we don't know are artistic, and perhaps even more interestingly, people are artistic, who don't yet know themselves, that they're artistic. I'm Ned Johnson. And this is the self driven child Podcast. I'm delighted today to invite as a guest, Dr. Donna Henderson, who is author of a current incredible new book called is this autism, it is just out, we record this. I'm so happy to have you join me I'm more happy, of course that you've written this wonderful book. And and what if you could just take a moment and sort of introduce yourself a little bit to a reader so they can get a sense of who you are and what you know.

Dr. Donna Henderson: 3:06

Sure. Well, thanks for having me on that. I appreciate it. I'm a neuro psychologist, I work in Maryland at the sticks route group, that name might sound just a little bit familiar to you. And I didn't start out as an autism specialist. But I learned that everybody in mental health and healthcare educators really we all need to understand autism. And so I've learned a lot over really the past 10 years or so. And I also have a fabulously neurodiverse family of my own. And I've learned at home all the time.

Ned Johnson: 3:40

I love that the past 10 years, I'm sure you went from knowing not a lot to knowing, from least from the book kind of kind of everything that's in the current thinking. But apart from reaching the level of experts to share this, what led you to write this book now.

Dr. Donna Henderson: 3:55

I avoided autism. For the first part of my career, I didn't get much training about it. And a lot of mental health practitioners don't get much training about autism. When they do, it's pretty limited. So I avoided it, I was intimidated by it. And frankly, I was fine with that I wasn't particularly interested until I got to a point really about 15 years ago, and I won't tell you the whole story. But I finally realized, Oh, my goodness, there are autistic people coming into my office, they don't know they're autistic, I can't just say I don't do this and send them to somebody else. I have got to learn about this. And I started learning and when I was learning, I thought it was just me at first I thought I did not get good training about autism. And I had sort of secret embarrassment about it. And I have come to realize over time that this is true for so many clinicians, just don't learn about it. And I think a lot of clinicians are secretly embarrassed by that, and a little bit intimidated. I also figured or sort of realized that it was hard to learn about there weren't great resources. There were autistic people who were explaining their lived experience, there was a ton of research, I would hunt down clinicians every chance I got and talk to them. But what I was seeking was integrating all of that understanding how to integrate those three. And that's what ultimately led me to write the book, I wanted to help other clinicians learn what I had learned by integrating research, clinical experience and actual autistic lived experience.

Ned Johnson: 5:31

And full disclosure, I one had the advantage to get to know about your work a little bit by attending the training that you did. For folks who don't know I'm not a clinician, but I was in ways similar to what you described. I see kids all the time and I want to understand, at least at the at the most basic level what it is that I'm seeing in part so if something feels right If there's something that no one's quite put their finger on here that I can help, you know, guide them to people like you who know things. I also send we our daughter was diagnosed just before she turned 19 with autism, and you as a guide through that may occasionally share a little bit about our family's experience, but won't ask you to share because of course, as a doctor, you have to maintain that privilege that Katie has with you. But to frame things up, can you explain just big picture what autism actually is? Because I have a feeling, folks may think they know what it is. And I imagine that they're all right. But partially right. If you would

Dr. Donna Henderson: 6:21

ask me that, you know, when I was in high school, say, 14 years ago, I would have never heard, I never would have heard of it at all. If you had asked me maybe in the 1980s, I would have thought of Rain Man, right? Somebody who has really, really high support needs and is overtly a typical, if you'd asked me in graduate school, I probably would have added Asperger's to that. But I still would have thought of somebody who's overtly atypical, probably a white male, maybe somebody who's super, super smart, you know. And then maybe about 15 years ago, we started understanding the female phenotype of autism. And we don't really use that term anymore, because Philly people of any gender can have a less obvious presentation of autism. But that mountain of research about how females can present differently from the traditional male presentation, really is what taught us about this presentation of autism that is not stereotypical. So what is autism, I now think of it as sort of five layers, I think of the first layer as having a different type of nervous system, that is what it is at its core. The second layer, then is that because you have this different type of nervous system, you experience and process and respond to the world in different ways from non autistic people. And this can include your experience of external sensations like noise and textures, your experience of internal sensations like hunger and thirst and pain. This can affect your movement patterns, your communication, your information processing. And so you have these lifelong pervasive differences in how you experience and respond to the world. And none of that is a problem, per se, except that you are part of a minority. And you have to live in a world that's really pretty much designed for non autistic people. So there's a mismatch between the world and your nervous system. And that mismatch causes communication problems. So a lot of misunderstanding or being misunderstood, can cause social problems, anxiety, sensory overwhelm, so that sort of the third layer is the mismatch between your nervous system in the world. And then we get to the fourth layer, which is the blame and shame that comes along with it, just any minority group, you are different. And so when there's a misunderstanding between an autistic person and a non autistic person, it's the autistic person who basically gets blamed and shamed and invalidated. And there is just an unbelievable level of stress in that, you know, just Why are you so quiet? Why are you so sensitive? Why can't you make friends? You're so smart, why can't you succeed this sort of constantly. And then that leads us to sort of the last layer in Donna's view of autism, which is they internalize and blame themselves. There's this internalized ableism, which is really, really sad to me. And I should add to there are also strengths that come with being autistic too, unfortunately, we focus on the challenges is the challenges are significant, but the strengths are significant to

Ned Johnson: 9:44

you. And that idea of both being a minority but being an unseen minority. I was smiling as I was reading the book, I recall the first autistic student as well, the first student I knew who had autism, I should, I should clarify there. I don't know this was like 1996. And his mother had told me, you know, he's autistic, and it seemed readily apparent. And we had this lovely first meeting, I do test prep, and it's mom came and picked him up. And he was walking out the door. The door hadn't even close. He had one foot in my office and one foot out the office. And he said in a voice that was probably louder than his mother would have suggested. Said he seems very nice, but boy is his office at dump. And I how because I'm like, Yeah, I think both of those are probably true. No, my office was a dump. And my I was just talking about my daughter who you're talking about the strength and she's incredibly bright and incredibly funny and incredibly creative and on and on and on it goes. But has it so many of the challenges Did you talk about in the book, and we couldn't understand it. And I think more importantly, she couldn't understand it. And that's one of the things that I think was so revelatory for her is it was you know, is really exculpatory like this, again, when we sat there in your office, and you said, this is the way your nervous system is, right. So this is not an issue of character. It's just the brain that you got, it's got the brain that you got. And that idea of a mismatch is really just a really effective way for folks to think about this, I think both for parents of children who are artistic and for artistic children, adults themselves.

Dr. Donna Henderson: 11:22

And can I just jump in there and show you really just touched on, you know, something that I think is so important, because so many people are just trying to understand themselves parents who are trying to understand their children. And some of these kids who are autistic and don't know it have had one diagnosis after another, or one clinician after another saying it I'm not really sure, or it's just ADHD, or just anxiety. And I just think there is something so unbelievably life changing, about finally putting all the different pieces together, and fully understanding and it changes the narrative, it changes the narrative of that individual, and how they see themselves. And, and they can separate their neurology from their character. And that changes the narrative for the parents, and the teachers and everybody else in their life, but particularly for the parents as well. And I just think it's so unbelievably important.

Ned Johnson: 12:16

I really appreciate you emphasizing that it's funny for me, because for folks who don't know me, I am. I'm not too sure on the extreme end of extraversion, but I'm pretty far out there. And I have the sense about myself that you could drop me in the middle of anyone's party or cocktail party or whatever, anyplace. And within five minutes, I'd find someone because I just find people just so darn interesting. And at this point, I think I'm adept enough to kind of carry on those conversations. And my wife is even more charming than that. I like to think of myself as being. And so it was just so we're like scratching our heads like, why is this? You know, why are social situations? hard for her? Because, you know, seemingly, this is kind of who mom and dad are in should certainly have the opportunity to watch. And it's not that she can't do them. It was just that was hard. Right? And I think that intuition piece, let me back up a little bit. I won't ask you to kind of go through the entire book, because folks, rarely do I read a book with this much wisdom packed into this few pages in a way that's accessible. So So kudos to you and your co authors, Jamal and Sarah for, for doing this. But can you just walk through kind of the big picture 30,000 foot level for people who are new to this have? What are the criteria we're looking at when we're trying to assess autism?

Dr. Donna Henderson: 13:27

Yeah, okay. So that criteria fall into two categories. The first category is social and communication differences. There are three in that category. The first one is all about interactions. And understanding intuitively said that word intuitively, how to greet people respond to greetings, share personal information and experiences, have interpersonal curiosity and build on what other people say in conversations, engage in perspective, taking automatically sort of read other people's minds and know, you know, be able to take a good guess at what's going on with another person. So everything about the back and forth flow of interactions. The second criteria and in that category is nonverbal communication. And it's not as simple as do they make eye contact. You know, most of the autistic people, the type we're talking about today at least, learn at a pretty early age to make eye contact. It's about using eye contact to manage interactions, it's about the internal experience of eye contact. For non autistic people, eye contact is pretty much a neutral to slightly pleasant experience. But for a lot of autistic people, it's effortful, uncomfortable, distracting, it's, you know, something negative. A lot of these, this type of autistic person, you won't notice a whole lot of differences in their nonverbals like their tone of voice, their use of gesture, you may or may not notice things they learn to camouflage pretty early on. But it's hard for them to read other people's nonverbals. So that whole realm of nonverbal communication, they can be exquisitely tuned into the general tone of a room exquisitely tuned in, but not be able to sort of sort through the details and really understand that. And then the third and last criterion in this category is about relationships, making friends, keeping friends, having relationships at the expected developmental level, understanding relationships, managing conflict, social motivation, which can be really really high for an autistic person or actually really, really low. So just everything about relationship management. So that's the first category reciprocal interactions, nonverbal communication and relationship management,

Ned Johnson: 15:54

you may say I have a student who I'm working with, and he's, he's delightful and brilliant. And his autism for him is pretty socially impairing. His dad had told me a lot about this before I met him. And so I was, I think I literally just done your training. So I was very mindful of how do I use my gaze, right? Because it's different for him. He keeps a list of classmates whom he hates, or who he thinks hates him, his perception on it. And so I just gently asked about relationships. And he basically said, I like to rant. Meaning that it's not isn't it's never really a reciprocal back and forth. He just likes to go off on and keep going with the things that really that are really interesting to him. It's quite interesting to follow along. It's rather performative, but kind of a neurotypical back and forth conversation. It does not quite make.

Dr. Donna Henderson: 16:42

Yeah, so you actually have already touched on two different sort of artistic styles of communication. A few minutes ago, you talked about somebody being overly not overly but unusually blunt. Right? very direct, very honest, you know, my oldest, who is autistic, I can count on her to tell me if my outfit doesn't look right. You know, my non autistic daughter will be like, Oh, that's a good color Avenue or whatever. But my eldest will say, it's hurting my eyes take it off. Right there a very blunt communication style. And another one, which you touched on is, instead of like, back and forth, like a ping pong game, a lot of autistic people prefer, I'm going to talk a whole lot at you for a long time. And then you can talk a whole lot at me for a long time, we don't necessarily have to do this back and forth, and back and forth, and back and forth, just a different communication preference. So that's something we would think about when we're thinking about those three social criteria.

Ned Johnson: 17:39

You may know Debbie, Debbie Rieber, who wrote differently wired and her son who's autistic. And I guess it's in her book, I don't know who coined the term, but when you when you meet one artistic person, you've met one autistic person, right? And so I think that people so often once we get a stereotype in our head of what an autistic person is, if they don't have those attributes, and I think we've started thinking they're obviously not because they don't have ABS, or x or y, or whatever it happens to be. Right,

Dr. Donna Henderson: 18:03

right. And we think about we have stereotypes about what an autistic person isn't. And so there are stereotypes autistic people don't have a sense of humor that could not be farther from the truth. Autistic people aren't athletic autistic people don't have friends don't want friends aren't fashionable, like, you know, so people see those qualities in someone and they code them as non autistic and think this person can't be autistic. You can't just tell if somebody's autistic.

Ned Johnson: 18:33

Glad you wrote this book. Do you want to walk us? So you mentioned there the social and communication I gather? The next chunk is more physical stuff? Yes.

Dr. Donna Henderson: 18:44

Well, it's called the repetitive and restricted criteria. So there are four in this category. And here's the thing, you only need to meet two of the four. And all of this is either currently or by history. So if something was during childhood, and no longer true, it still potentially counts towards the diagnosis.

Ned Johnson: 19:03

It's a good question on that. If we can say, Gosh, that was solely true when Ned was six, or eight or 10, or whatever. And it's no longer the case. Is it the thinking that I grow out of it or more that I learned to mask or camouflage? And some people don't see that anymore? Because I got so blowback on it.

Dr. Donna Henderson: 19:19

I mean, a little bit of both, I think, but I think it's a lot of camouflage. I mean, like a lot of autistic people I've interacted with had sort of a more obvious sibling when they were younger, and they learn how to hide the stimming. Explain to folks what stimming is, if this is all new to them, basically engaging in some kind of repetitive behavior that just helps you self regulate. So classically, we think of somebody who's flapping their arms, this body rocking, absolutely, but a lot of right autistic girls pace back and forth, or walking around in circles, or picking, skin picking or hair pulling repetitively. So any kind of repetitive motor behavior, it can also be repetitive. By the way, this what we're talking about now is the first of the four restricted, restricted and repetitive behaviors. So it's any behavior that's repetitive, or idiosyncratic. So it can be like I said, motor behavior, it can be language that's repetitive, like asking the same question in the same way repeatedly, or language that's just not typical. You know, for instance, my daughter calls me mother. Like that is not typical for our family. It's just a cute quirky little thing.

Ned Johnson: 20:31

1940s American.

Dr. Donna Henderson: 20:34

Right? Just and obviously, if a kid says one quirky thing that doesn't make them autistic, but you're looking for patterns, that the third part of this criterion, people forget about and that's repetitive use of objects. So, other behavior that's repetitive reading In the same book over and over, again, watching the same TV show over and over again, you mentioned list making before that sort of systematizing behavior, we make a list of everyone I know. And I'm going to categorize it by whatever how much I like them how much they might be, or not being my friend, how tall they are, whatever it is just list making spreadsheet making. So that sort of repetitive categorizing behavior. So that's all the first criteria in this category, which we informally sometimes call standing. And it's

Ned Johnson: 21:23

ng egg, to your point about the things that are weak or perceive outwards and things that only only the person, him or herself would know. I had not seen Kaizala and see my daughter rocking, but what she described was she in class, and then she found school oftentimes intense, she would flex your toes and her shoes. Yeah. And of course, she was the only one to do that, you know,

Dr. Donna Henderson: 21:47

right, I have actually heard that one from numerous autistic people as a way to engage in some repetitive behavior that nobody else can see. Or tapping their teeth in a certain pattern. I've just heard so many interesting little ones, because they learn pretty early on if I engage in this stuff in a bigger, more outward way, there are negative consequences. People think it's odd. Yeah. So that's the first one of the four. The second one is in flexibility. And it's not that someone is inflexible all day, every day in every way. They can be flexible in lots of ways. But they might have difficulty coping with change or transitions. They might have black and white thinking that black and white thinking can be about people, like, you know, I hate this teacher. And that's it. The whole year is going to be shot with that teacher.

Ned Johnson: 22:38

Been there done that? Yep, holding

Dr. Donna Henderson: 22:40

a grudge. You know, somebody did something I perceived as wrong in first grade. Now we're in 10th grade, and I'm still going to hold that grudge. It can be about a younger sibling. And this goes way beyond sibling rivalry. Sometimes there's just very black and white thinking in a negative way about a younger sibling. Other ways of being inflexible. is perfectionism. A big one, just you're looking for sort of islands of inflexibility, just different ways that people can be in fact, well,

Ned Johnson: 23:07

that's an inch way to think about that it is that often because of a particular domain in which it's stressful, and therefore they are this behavior, adaptive or maladaptive is to feel a greater sense of control in their kind of like OCD or what what's the thinking on that? I think there

Dr. Donna Henderson: 23:23

are multiple reasons for it. And what just crossed my mind as you ask that, and I heard this story once from an autistic person, I wish I could remember where I heard it from. If you're listening, and it's your story, please tell me so I can credit you is, you know, he said it was like, I wake up in the middle of a minefield every day. If I step on the wrong in the wrong place. I'm stepping on a mine, and it's going to explode in my face. And I've learned one path to get out of the minefield. Why on earth would I stray from that path?

Ned Johnson: 23:53

What an interesting point. Yeah, yeah,

Dr. Donna Henderson: 23:56

yeah. So I mean, to me, that's a really helpful way to understand this if you want to get more sort of down and dirty about the brain. And I'll try to be really brief about this. But a lot of non autistic people have an odd way oversimplifying here, but sort of top down processing, where we get the context first. And the context helps us in in every way, it helps us know what's relevant, what isn't relevant when to generalize a rule when to make an exception to a rule. So among many other things, it helps us be flexible. But a lot of autistic people have bottom up processing. In reality, we both have both kinds. But for them bottom up processing takes sort of precedence. We informally call that context blindness. They're not really blind to contexts, but they don't easily automatically use context, to make their decisions to guide their understanding. And so then they can't be as flexible. So it's just sort of fallout from how their brains work. And there are advantages to having that kind of brain, they tend to notice details that the rest of us ignore, but the disadvantage of having that bottom up processing is it's hard to be flexible sometimes.

Ned Johnson: 25:12

And so that's a little more seen every tree there is it before you realize it's a forest versus a forest and then choosing what tree to pay attention to a little bit.

Dr. Donna Henderson: 25:20

I mean, for a lot of them, it's it's seeing every vein on every leaf on every tree, and not even and taking a long time to finally realize, Oh, it's a forest and it's not like they don't get there. But they it takes a lot of time and effort to get there. And this is really important because so many of them can do fine on processing speeds of tests if they're being tested. So it's not about internal processing speed, but it is slow. Working tempo, because they're not necessarily slow, but they're processing way more information than we are. So it takes them longer. Oh, interesting. Yeah. The first is repetitive behavior. The second is in flexibility. And remember, you only need to need to have these four. The third is interests that are either atypical or really intense. So a lot of these kids who go undiagnosed have typical interests that are really, really intense. It could be animals, or a particular kind of animal, it could be Kpop, Warrior, cats makeup, it can be reading, anything under the sun, anything at all, that just gets really intense. And the intensity isn't necessarily about how much they talk about it. Because sometimes they're not inclined to talk about it. It's about their experience, the intensity, how much they're thinking about it, how much they want to engage in this interest. So that's the third one and that's a great thing. I mean, many autistic people grow up and build their career based on their intense interest. You know, do you know Dan Ackroyd is autistic? Do you know that? Yeah, you

Ned Johnson: 26:55

chair that? Yeah. And I it's funny because I, you know, Dustin Hoffman jumps to mind not not inaccurate, right, you know, Dustin Hoffman's character?

Dr. Donna Henderson: 27:03

Right. So growing up, I've heard that Dan alkaloids, intense interests. were crying, fighting and ghosts.

Ned Johnson: 27:10

Oh, you're kidding. Right? Oh, my goodness. And his favorite snack was marshmallows. And we've got it all covered. Right. Holy cow.

Dr. Donna Henderson: 27:21

Yeah. I mean, you think about you know, I don't know if Bill Gates is autistic. But you know, people in Silicon Valley who just want to code code code and college professors who want to talk about one thing all day long. I mean, it's, it's a wonderful thing to have an intense interest, right? Yeah, it is. Yeah. And so then the fourth one in this category is sensory differences. And this can be hyper responsibility, you know, sensory sensitivities, it can be sensory craving. But here's the thing most people don't know, most people think about the five senses that we all learned about when we were younger, there are actually eight senses. And people don't think about the other three, which are proprioception, and vestibular, which have to do with knowing where your body is in space and knowing what your body is doing. And the last one is interoception, which is knowing what the heck is happening inside your body perceiving signals from inside your body. And contextualizing them and understanding them. So that if my heart rate escalates, and my stomach clenches, that sends a signal to my brain that contextualize it, and decides, am I anxious? Am I excited? What's going on? Like, that's how we know how we're feeling, not only for affective emotions, like anxiety and anger, jealousy and sadness, but also for homeostatic emotions? Do I need to pee? Am I hungry? Am I thirsty? Am I in pain? And so autistic people can have differences in interoception. And a lot of parents haven't heard about that. And interoception is super important.

Ned Johnson: 28:55

That was, for me, that was the most important thing, because I had not heard that term before until you share that with us. One of the things that I took away from that is, because our emotions are sort of our, you know, distant warning system, right? And we often feel those things internally, as much as we can process them cognitively. That feeling can come first and then and then and then we try to make sense of it. And if you're feeling your stomach's turning, you know, am I anxious that I have a bad workout, right? Am I too hungry, and I ate too much did eat the wrong thing that that to them. And if a person struggles with reading what that means, oh, golly, right, you're sort of blind a part of that. And one of the things in this is just for our family of how this often is tied up with GI issues and and eating, you know, disordered eating and above ABA. And I had a family background with a lot of difficult family, a lot of trauma and substance use all kinds of stuff going on. And so, as a little guy, I could feel what was going on with my parents, right. But I didn't know because no one was telling me. And so I can still remember having stomach aches before school all the time. And I really liked school, but I think I was picking up on the stress in my household. And so with our daughter, Katie would have me aches in second grade, fourth grade, blah, blah, blah. And I was pretty darn sure that it was because of anxiety. But I took took meeting you and 12 years for to be able to figure out what the source of that was. And so the idea that oh my gosh, the lived experience of feeling all these things, but not being able to explain them I remember with Katie I could tell that she was upset everyone you know, she knew she was upset. And I asked her sort of what's going on? And she I don't know. Yeah, and I thought well come on out come we really know what what's going on. She's literally I don't know, I thought what a what I mean, having hard feelings is hard but having a hard feelings you then can't fully understand or process.

Dr. Donna Henderson: 30:46

Right. And what do we do with these kids? We stick them into psychotherapy where somebody says how do you feel? How does that make you feel? And then everybody doesn't understand why they don't make progress in psychotherapy, not that autistic people can't make progress in psychotherapy. But if you have really, really, really low interoceptive awareness, and by the way, what you touched on was alexithymia. Like a lot of people have probably heard the term alexithymia, which is the verbal part of this, the actually being able to describe your inner experience and your feelings. interoception is the physiology that underlies alexithymia. Okay, just to know how to put it all together, thank you for that. So if somebody has really low interoceptive awareness, traditional CBT psychotherapy is going to be hard for them. We have to start by helping them with their interoception first, like, there's no point in teaching somebody what to do when you're anxious if you don't know that you're feeling anxious.

Ned Johnson: 31:46

Oh, my God, you know, and it's so for anyone who's listening who may have, you know, family or themselves in the similar situation, it's so it's just been such an interesting journey for me as a dad, because again, I got this daughter who was just I mean, she's crackerjack smart and precise with her language and articulate to the nth degree. And then say, I don't know what I'm feeling. I'm sorry. I mean, I found myself occasionally be like, Oh, come on, right. Yeah. It's still learning. Still learning

Dr. Donna Henderson: 32:17

to me. Every day? Yeah. So So that's that second category is it's repetitive behavior in flexibility, interests and sensory differences, and you need to have the four. So let me ask this.

Ned Johnson: 32:30

So again, I think a lot of us are ready. You know, even even people when we know better, we still would default to preconceived notions or stereotypes about what a person with autism is experiencing or looks like, what whatever you want to call it. And if a person doesn't have kind of obvious impairment, it isn't obvious to the outside world. I can imagine people being skeptical think it will come okay, what's the what's the problem, right? They can get on life, they can mask you know, they can they can be charming, and, and funny and social and play sports and do everything else that everyone who's not autistic like? So what's the big deal? Like? Why is this a big deal?

Dr. Donna Henderson: 33:03

Oh, my goodness, I when I do trainings, I show videos of autistic adults talking about certain things. And what just ran through my mind was there's one college professor, who if you interact with him casually, autism would never ever, ever crossed your mind in a million years. He was saying, Yeah, I can go to the department party, I can interact with people. And I won't stand out in any way. But what people don't see is that I'm then in bed for a day and a half after that, like really, truly, a day and a half to recover from. He said, If I stay at the department party for one hour, and this is not somebody who's, you know, overly dramatic or anything, this is real. And I've heard this from so many autistic adults. So when people ask me that, what's the big deal, it tells me that they don't understand what autism is, they're thinking autism is just the external behaviors. But it's not, it's the experience. And you have to think about what it took for that person to demonstrate those typical behaviors, the amount of planning the amount of executive functioning, and the recovery needed afterwards. And autistic people have sky high weights of pretty much any mental health disorder, they are at higher risk than non autistic people. The rates of anxiety are ridiculously high, the rates of depression, the rates of suicidality, substance abuse, eating disorders. So that's mental health problems. There's also they have higher rates of medical health problems in virtually every system in the body. It's not just gut issues. I mean, I was blown away when I started delving into the research on this. And most of all, it really comes back to you know, we all need to understand ourselves, we all have a right to understand ourselves in a way that is built with compassion and not the frame. And that's what understanding themselves as autistic can give them, they can finally stop blaming themselves, and have some self compassion and start to learn how to accommodate and live in a way that works for them.

Ned Johnson: 35:10

That was one of the really interesting for our family takeaway after this diagnosis. And it also, for both my daughter, I actually have a colleague here at my office who's brilliant, asked at a holiday party, do you enjoy this? And I was like, What do you mean? And he said, you know, all this, you know, socializing. I said, I can sit here and go to one person's party for six hours and go to another and I just can't get enough of it. I said, why? How about you? They said, for every hour that I spend it at a party I need to spend at least one hour like in a quiet room and this person is is brilliant and just laugh out loud funny, and if I take what I think understand all the skills to do it it, but it's not intuitive, and therefore it's very effortful, right. And constantly probably both reading the room and self monitoring in ways that are emotionally and cognitively taxing. And there's a cost to that.

Dr. Donna Henderson: 36:02

Such a cost. And part of the cost too, is not being able to get a sense of who you are as a person if you're always pretending to be someone else. A good point, when you mentioned your colleague, I thought of a colleague I have. So this is somebody I've worked with for over a decade, never thought of him as autistic until one day, he mentioned it to me. And I was like, Oh, of course, it made perfect sense when he said it until he said it. You know, contrary to popular belief, I don't wander around, like just trying to decide who's autistic and but anyway,

Ned Johnson: 36:36

so people's grammar, the rest of it.

Dr. Donna Henderson: 36:40

So one day, I walked into his office, and I immediately launched into hay about this patient, papa, papa, papa. And then I caught myself and I said, I'm sorry. I skipped all the social niceties. Hey, how was your weekend? And he laughed and said, frankly, I'd prefer to skip all the social niceties. I do that for everybody else. I don't like it. It's hard for me. And I said, Okay, I can work with that. That was a few years ago. So now every time I see this colleague, who I'm very, very fond of, I have to consciously so this takes executive functioning, this takes cognitive energy, I have to consciously remind myself, not to do what feels natural to me, not to say, Hey, how are you what's new, how's your family all that, but to do it his way. And it gives me this teeny tiny window into what it's like to be an autistic person masking. And it's hard. And it's one type of interaction with one person that I probably see twice a week, and that it's hard for me, Wow, I can't even imagine what it would be like to camouflage all the time.

Ned Johnson: 37:47

Whether this is not the topic of our conversation, but what it makes me think about is people of color in predominantly white spaces, and doing that code switching back and forth. You know, and of course, for any person in any system, when things that are more stressful, it's It's taxing on nervous systems and mental health. And on and on it goes.

Dr. Donna Henderson: 38:08

Yeah, Janelle wrote about that. In our book, she addressed cultural considerations. And now think about an autistic person of color, who is double code switching.

Ned Johnson: 38:17

So one of the things about what I think I took away from the book Natali, you know, try to make what we know about autism more complete, and making it more accessible. So I mean, I know you do trainings all over the place, trying to get people who are you 15 years ago, kind of closer up to speed to where you are now. But also for, as you mentioned, you know, everyone you know, not just people with your background, but psychologists and teachers and parents and even individuals themselves who might be wondering, this whole journey with us started, my daughter came down, oh, September, October, something and said said to us, do you think I have autism? And I, as well, if you if you do this, it isn't obvious, what makes you think that? And she said, I just watched basically eat 100 Tick Tock videos. And I wonder and these all ring true. And so of course, my writing partner and your colleague, Bill sticks shrewd and who then said well actually talked to Don about this, and off we went. But do you worry about people and kids or anyone sort of diagnosing either ruling and ruling out with tick tock? Or is there kind of a warning label that should be on this book? Or is it is it more just it's informational? And if there's enough here, then you take next steps and and talk? Well, I mean, how do people most effectively use this book, knowing that I'm not likely to ever know, these nuanced about these things? As someone who sits in your seat?

Dr. Donna Henderson: 39:35

Yeah, well, you know, information is power. And I think we live in an amazing time where people have access to information, you have to think about where you're getting your information from. And so if you're watching Tic Toc, and it's somebody who is an expert in some way, that them out, and then you can listen to what they have to say and take that in. I wouldn't listen to just sort of any random person telling me things about any topic, right? I mean, I might, but but, but a grain of salt. But I'll tell you what, when I do presentations, afterwards, you know, people come up and want to talk. And inevitably, some of those people have listened to what I have to say, and they say, I think I'm autistic. Like I'm having a moment and I seriously think I might be autistic. And I can divide those people into two groups. For one group, it's a passing thought, because one or two things I said resonated with them. I'll put myself in this group. I'm not autistic. I'm an ADHD er, but about once, maybe twice a year. I have a moment like, Hmm, I have some sensory sensitivities. I thought the most socially skilled person in the universe my husband tells me I can be rigid, like, maybe I'm autistic and I don't know it. But then it passes. Is it doesn't fully resonate with me, the more I think about it, the more I realized, no, this does not fully describe who I am. So that's one group. But the other group of people, it rocks them to their soul, when they learn about it. Everything about it resonates with them, it's like their whole life is being explained or their child's life is being explained. I mean, it is a deep, deep, deeply moving experience for them. And these are the people who then spend hours researching it and finding more information, and then try to find a clinician to see and then call and make an appointment and wait for that appointment and pay for that appointment, you're not going to do all of that, if you're not onto something. I'm not saying they're guaranteed to be autistic. But there's a big difference between people who have a passing thought, and people for whom this deeply, deeply resonates enough for them to follow through on it.

Ned Johnson: 41:46

A quick note on there, I can imagine as a parent, I can imagine as a non autistic person looking at another person who may very well be artistic, and thinking maybe maybe, and then it's the passing thought. And so just want to echo something you've said before that it can't be my evaluating someone else, because it's so much about that person's interior experience. Right? So parents who are clinicians, I mean, I read a lot of neuroscience psychological evaluations in my work, and a family I was working with, and it's a clinician who was implicit, I don't think yet knows what you know, who said, Well, it's pretty likely that Sammy has Asperger's, but under no circumstances, is that autism? What? Yeah, and I thought didn't they change that? Like, wasn't that when the DSM five come out, like 20 years

Dr. Donna Henderson: 42:34

ago? 2013? Yeah, thank

Ned Johnson: 42:36

you. So I thought, Oh, boy. So everybody has an opinion with any diagnosis right of the patient themselves holds information that the job of a doctor to find out and so be careful for folks who have a fleeting thought about their son, daughter, wife, you know, they don't make that decision for the other person. Yeah, I would also say

Dr. Donna Henderson: 42:55

if you're a parent, and you're learning about autism, and it resonates with you for your child, and you think my God, this helps me really understand my kid, that you may be onto something.

Ned Johnson: 43:07

Yeah, I will. I will say for us, when we got that diagnosis, one remarkably helpful for Katie, but it felt to me like the end of the movie, The Sixth Sense, when you're like, oh, yeah, oh, my gosh, it really, it really, in some ways, kind of explained everything, the things we couldn't understand things that were challenges in unexpected ways. It was really, really revelatory. And and again, you know, for her change, really how she thought about herself and changed so much how we, as parents, were just more understanding. I mean, if we go back to that extraversion piece, I would always want to pull her in and spend more time we as a family traveled to visit her son overseas, and just simply asked her, What would you like to do, and my wife and I want to have some shmancy dinner. And three years ago, I would have felt bad that she said she wanted to stay home and just do whatever, that somehow I goofed up. And she's basically just saying, No, I would prefer to have downtime, and go into some loud, fancy dinner. It's not not interesting to me. And it was better for her and better for me, because she was having her needs met. And I didn't have to feel guilty that because I would expect it if things were right air quotes, right. She would be experiencing that the way that I experienced it.

Dr. Donna Henderson: 44:19

Yeah. So so many opportunities to learn there. Right. Yeah. Never Ends.

Ned Johnson: 44:24

I want to make one quick other point that, you know, throughout the book, you use language, I think what we learned from girls with or what the girls told us, right? Can you just talk about that for a minute? Again?

Dr. Donna Henderson: 44:35

Yeah, I mean, when I first got the idea for this book, it was a long, upright, 10 years ago, maybe. And at that point in time, we were all talking about this female phenotype of autism, it was like this awakening of Oh, historically, far more boys got diagnosed than girls. And particularly with people who have averaged to well above average intelligence, that boy girl difference was less pronounced with people who have intellectual disability. And all of a sudden, we started realizing, whoa, whoa, whoa, girls, with average to above average intellectual functioning, have a less obvious presentation of autism, but it's still autism. At first, I was going to write about that, because that's where all the research is. But of course, then I gradually realized, no, there's a lot of males who have this presentation tons and tons of, you know, men walking around out there who were missed, or misdiagnosed. And also, we don't really think of gender as a binary the way we used to do that there are people of all genders who can have this less obvious presentation of autism. So I wanted to include the research because the research has informed our understanding of this, but I didn't want it to be about the girl so what Sarah and I settled on after hours and hours and hours of trying to think through it is the sections at the end of each chapter that are what we learned from the girls.

Ned Johnson: 45:58

Yeah. And I'll ask you this. I don't know if this is an apt analogy, but in the work that I do, I think about ADHD, right. When ADHD was first diagnosed, it was the conceit was the stereotypical boy who can't sit and share and he's impulsive, and he can't raise his hand and yada, yada, yada, yada. And we thought about this as a boy problem. Of course, not always. But the vast, vast majority of girls and women who have ADHD or do not have that hyperactive impulsive tendency, but more combined and attentive, right? So it's internal. So the brains go off to play in the middle of class, their feet are, you know, they're sitting right there, their tissues in the chair, they're not bouncing all over the place. But their, their brain is going off to something more interesting, right? Yeah. And I saw this over and over and over with, I'm thinking about a student I had it a highly selective school here in DC, who had sophomore PSAT score through about 500 points below the average for her school. And I'm thinking this, this doesn't make sense because that how could she persist and be even reasonably successful at the school? And I kept asking all these probing questions, and her mum got a little frosty with me. And she finally said, Look, clearly, if there were an issue, someone at her school would have said something. And I smiled, I said, I can see why you think that, but your daughter is delightful. And she's a pleaser. And it's just that as soon as Mr. Johnson is boring, which is probably all the time off, she goes to think about whatever else. And I'm thinking a bit about with autism, that we're starting to realize this is much more subtle presentation. In the same way that was kind of the case with girls. Does that an accurate way to think about that?

Dr. Donna Henderson: 47:34

Oh, yeah, I mean, Kathleen, and DOE is a psychologist who was sort of at the forefront of understanding the girl presentation of ADHD so to speak. And she wrote to me at one point in the last year, saying, I feel like you know, you're bringing me back to the days that we were talking about the girl type of ADHD, and now it's an hour, we're doing it with autism. So absolutely, I think there's truth to that.

Ned Johnson: 47:57

What are some final thoughts that you would have for parents, or clinicians who are working with a young person or even older person and kind of wondering? And then also, presumably, they're going to be a lot of people who, as you describe, like, oh, my gosh, and this will just resonate? What are thoughts you have, for people who are autistic who don't yet know, they're autistic, as they as they listen to this or pick up your book?

Dr. Donna Henderson: 48:19

Two things. One is just wish everybody would have an open mind about what autism is because people think they know what it is. And most people have a really outdated understanding of it. And I'm including clinicians and educators in that, and it's not your fault. If you have an outdated understanding of autism, it is absolutely not your fault. But the research is there. And we now have clinical understanding, and just, you know, be curious, and you can read my book, for sure, that would be great. But another great thing to do is to read books by late diagnosed autistic adults, and that can really help you understand it, you know, one of my favorites is called, what I mean when I say I'm autistic by any coder with the wonderful book, so just be open and listen to podcasts, talk to people read books, learn. And the other is, I'm going to borrow this from my co author, dear friend, the fabulous Dr. Sarah Weyland, whose motto is to meet difference with curiosity and not judgment.

Ned Johnson: 49:24

And that applies to both non Autistics and Artistics themselves. Why don't you go back to your point about blame? And then internalized shame? Yeah. I love it. Yeah. Well, kudos to you and your colleagues. It's a really wonderful book, I think I'm like a lot of educators where I have the great opportunity to work with kids. And my stated expertise is on something that's not that, but I'm only a dad, my daughter has, right, I'm the only tutor that this kid has the only English tutor, you know. And so I think for all of us to know, and to be curious, and to learn more about this. So at the very least, we can go on that's interesting, and be someone who doesn't shut things down. But he continues those conversations to learn more about young people and adults as well and to help them learn about themselves. Because I think, as you said, knowledge is power. And I think for all of us to understand ourselves more fully across the whole spectrum of human experience. It's pretty, it's pretty good stuff. Thank you for this book.

Dr. Donna Henderson: 50:20

Well, thank you for letting me sit here and talk about it for an hour. We could talk about this all day long.

Ned Johnson: 50:27

So last question for folks who want to learn more and connect with you where where should they find you?

Dr. Donna Henderson: 50:33

My website is just my name with Dr. In front of it. So Dr. Donna henderson.com and I keep a list of podcasts and I have a blog and other fun stuff on the website and our website for the books. Is this autism calm Is this autism.com

Ned Johnson: 50:52

Dr. Donna Henderson book is is this autism a guide for clinicians and to everyone else, and I'm in everyone else category. I have thoroughly enjoyed this. I hope people pick up the book and read through and it's terrific. I'm Nick Johnson and this is the self driven child podcast. Thanks and love your kids. Hey folks, Ned here. Over the past 25 years, I've talked with 1000s of parents of high school students, parents who care deeply about their kids education and how they deal with stress and the pressure to succeed. But these parents need to work with a team they trust won't just pile on more pressure to achieve better grades and scores. This is why I started prep matters in 1997 to create a different kind of experience for test preparation, tutoring in college admissions planning. This podcast and my books reflect our company's philosophy and approach to helping students if you have a high school student and we'd like to talk about putting in place a plan, please get in touch with us, visit our website at prep matters.com or call 301-951-0350. That's 301-951-0350 Thanks