Full PreFrontal

Ep. 198: Donna Henderson, Psy.D. - Is This Autism?

June 09, 2023 Sucheta Kamath Season 1 Episode 198
Full PreFrontal
Ep. 198: Donna Henderson, Psy.D. - Is This Autism?
Show Notes Transcript

If a boy has an odd affect, you might think he’s autistic. But if a girl has an odd affect, you’ll think she’s a drama queen!…How does autism present itself? And what if it presents in a way you might not expect? The ordeal of connecting, communicating, and belonging to a neurotypical world while being neurodiverse is the same as navigating the right-handed world while being left-handed ~ it can cause angst and challenge. 

On this podcast, practicing clinical psychologist and co-author of two books “Is This Autism? A guide for clinicians and everyone else” and “Is This Autism? A companion guide for diagnosing”, Dr. Donna Henderson discusses effective ways of identifying and supporting autistic individuals, particularly those with subtle presentation who experience life-long effects which are much more than subtle.

About Donna Henderson, Psy.D.
Dr. Donna Henderson has been a clinical psychologist for over 30 years. She is passionate about identifying and supporting autistic individuals, particularly those who camouflage, and she is co-author (with Drs. Sarah Wayland and Jamell White) of two books: Is This Autism? A guide for clinicians and everyone else and Is This Autism? A companion guide for diagnosing. Dr. Henderson’s professional home is The Stixrud Group in Silver Spring, Maryland, where she provides neuropsychological evaluations for children, adolescents, and adults who would like to understand themselves better. She is a sought-after lecturer on the less obvious presentations of autism, autistic girls and women, PDA, and on parenting children with complex profiles. She also enjoys providing neurodiversity-affirmative training and consultation for other healthcare professionals.

Website:

  • http://drdonnahenderson.com/

Book:

About Host, Sucheta Kamath
Sucheta Kamath, is an award-winning speech-language pathologist, a TEDx speaker, a celebrated community leader, and the founder and CEO of ExQ®. As an EdTech entrepreneur, Sucheta has designed ExQ's personalized digital learning curriculum/tool that empowers middle and high school students to develop self-awareness and strategic thinking skills through the mastery of Executive Function and social-emotional competence.

Support the show

Sucheta Kamath: Welcome back to Full PreFrontal exposing the mysteries of executive function. I'm your host Sucheta Kamath. And I believe by trying to find connection between neuroscience psychology, and education in everyday life, we can help people transform their lives. This is one of the ways we can all achieve personal and collective growth. As you know, I bring you experts from all around the globe, trying to really take a deep dive into various topics. And this podcast is fueled by specific goals. One is to explain what executive function is and how crucial it is for personal development, self sufficiency, and even moral development. Second, is to help people understand the the relationship between the current self and the future self. And anytime we take on this task of engaging in change, self change, we need experts to guide us because we are not as observant as we think we are. And lastly, I'm really hopeful that these conversations will help you create a playbook for personal success. And one of the topics that I've been thinking a lot about and I will be talking or presenting on is autism spectrum disorder. And having been in this profession for many, many years. This used to be one of my favorite group of clients that I served and saw. And, you know, in last 20 years as my practice has changed, culture has changed and so has my practice. I see that there is greater awareness. There's great greater acceptance, but there's also a shift in how people with subtle symptoms are seeking help. And with that in mind, I am delighted to invite a dear dear colleague and a friend of a friend, Dr. Donna Henderson. She has been a clinical psychologist over 30 years. She is passionate about identifying and supporting autistic individuals, particularly those who camouflage and we will take a deep dive into the word camouflage here. She is a co author with Dr. Sarah Weyland and Jamel White have two books. Is this autism a guide for clinicians and everyone else? And is this autism a companion guide for diagnosing. Dr. Henderson's professional home is the Stixrud Group in Silver Spring, Maryland, where she provides neuropsychological evaluation for children, adolescents and adults who would like to understand themselves better. She is a sought after a lecture on the less obvious presentation of autism, autistic girls and women, PDA and on parenting with Complex Profiles. One of the reasons she is on this podcast is I had the surprise privilege of attending one of her workshops on ASHA Learning Paths, which is the American Speech and Hearing Association. And then I backtracked and connected with Bill Stixrud, who has been on this podcast. So with all that said, Welcome, Donna, how are you today?

Donna Henderson: I'm great. Thank you so much for having me.

Sucheta Kamath: So we talk about executive function, which entails this adaptive flexibility goal assessment, intentionally activating your focus, and persisting in the face of difficulties. And I love to often ask my guests that. Can we talk a little bit about you as a learner and thinker when you were younger? What kind of student were you? And when did you become aware of your capacity to think as a learner? 

Donna Henderson: Wow, that it's a great question. I was a terrible student. Really terrible. Oh, yeah. For the first half of my life. I was completely unaware of how poor my executive functioning was. It was really poor, my my inhibitory control my attention, my working memory, it was all so bad. And I wasn't aware that I was sort of committing the same mistakes over and over again. I wasn't doing anything to help myself. And I think Worst of all, I engaged in a lot of self blame because I I had this sense that I was a smart kid. and I was getting by, but I also vaguely knew that there was something off about my ability to self regulate and, and without a good explanation I just vaguely blamed myself for not trying hard enough or not being good enough.

Sucheta Kamath: So when did you discover that this is? And is that related to any childhood diagnosis?

Donna Henderson: I didn't get diagnosed with anything in childhood, because it was a long, long, long time ago. And we, we weren't diagnosing these things in general, and particularly not for smart girls. And so I went to when I went to graduate school, I started to learn about some of this and and relate it to myself. But it wasn't until I think I was in my early 30s, that I was diagnosed with ADHD, which was incredibly validating and freeing. And I could finally, you know, not only start to help myself be more functional, but to stop blaming myself.

Sucheta Kamath: Well, it's so interesting, I think I have had Terry Moffit on my podcast, who she and her colleagues have done one of the long, longest running studies, which has been the cohort has entered age 50. And one of the findings they had so and the participants were more than 1000. children from age zero, and the cohort is now 50, as I mentioned, and one of the findings, she talks about that, over lifespan, every single human being is going to be diagnoseable, or experience crisis that will officially qualify for a mental disorder. And so she said, we might want to reconsider labeling people, and particularly looking at labels as a permanent label. So look at your success, you know, the struggles we know about ADHD, you know, this writing difficulty being able to cohesively put ideas together or complete higher education. You are that student who probably struggled a lot, but build inside and then build skills. Is that fair to say about your own journey? 

Donna Henderson: Yeah, and you know, when you mentioned camouflaging earlier, and we usually talk about camouflaging in the context of autism, but as an ADHDer, I can relate to it in in a way. Because I do think that even now, as an adult, most of the people who interact with me professionally would not think I have ADHD, I show up for things on time I do my paperwork, I'm organized or come across as organized. But what they don't see is the unbelievable amount of effort that that takes for me and the stress that it causes and how much help I get that, you know, I'm really, really calendar challenged, I cannot work a calendar to save my life. And so, you know, my husband helps me manage our home calendar, and I have someone at work who helps me manage my work calendar. And without that I would not be nearly as functional as I am. And that's just one little example. So I, I really relate to that concept of camouflaging.

Sucheta Kamath: Excellent. So let's start talking about the your area of expertise. And so we are here to talk about autism spectrum disorder. And so can you just for our listeners, introduce the definition of autism spectrum disorder. And I think we have gotten rid of the term Asperger's syndrome, which of course, freaked a lot of people out, including me, because that was one of the ways to describe the subtle presentation of executive order of, you know, social communication difficulties. And so let's begin there. Can you tell us a little bit more about that?

Donna Henderson: Yeah, it seems like an easy question. But it's actually complicated because the DSM and the ICD, the things that we use to diagnose people define autism through observable behaviors, right? They talk about social and communication differences, and they talk about the repetitive and restricted behaviors. But the problem is that because those books define autism, through the behaviors, we start to think that's what autism is. Autism is those behaviors. But there are people who camouflage and don't show those behaviors. And that doesn't mean they're not autistic. To understand those people, it's essential to understand that autism isn't the behaviors, it's the fact that you have a different kind of nervous system. Okay, so that's sort of the first layer and if you have this different kind of nervous system, you're going to experience and perceive and process and respond to the world in a very different way. For most people, you're going to process internal sensations differently. external sensations, movement communication information differently than most people. And so the manifestations of those differences are, are the behaviors that we look for. And, and having this different kind of nervous system isn't a problem per se, except that autistic people have to live in a world that is designed largely for non autistic people. And so there's a mismatch between their nervous system and the world. And that mismatch causes a lot of problems. It causes a lot of, you know, misunderstandings, and being misunderstood and autistic burnout. And then, so that's another layer on top of having a different kind of nervous system. And then on top of that, you have the fact that they're a minority group. And so when you are a part of a minority group, and there's an an awkward interaction, or an interaction that doesn't go well, between a member of the majority group and a member of the minority group, it's the member of the minority group that gets blamed for is faulted. And so that's the paradigm we call sort of ableism when it comes to autism. And then there's even another layer on top of that, which is that autistic people then internalize and blame themselves, especially if they don't know they're autistic. And so I'm sorry, if you thought you were asking like a really quick, easy question. But I think it's it's important to understand the whole autistic experience. And not just say like, it's these behaviors, it's somebody who flaps their arms because it's so much more nuanced than that. And the last thing I'll say about that is, and you use the word subtle a few times, and I used to call it this, the subtle presentation of autism, and I've switched to the less obvious presentation, be told that what's the distinction? Well, the behaviors are subtle, but the internal experience is absolutely not subtle. And it was I realized, when I was calling it subtle, I was inadvertently sort of downplaying what a huge, huge, huge affected house on these people's wives.

Sucheta Kamath: Okay, so you have presented so many wonderful ideas. So I would like to kind of maybe address a few things. So number one, you're saying that there's a conventional wisdom about autism. And we may be getting it wrong, because it is relies heavily on explicit presentation of oddity, or awkwardness or certain behaviors that are blaring or glaringly, you you're able to observe. And if that is not the case, then we may not, we may be missing the big picture. And, you know, this reminds me of Hannah Gatsby, one of the comedians who has done amazing justice to this complicated process by talking about her own life struggle. And she has brought a lot of attention. But one of the stories she used to tell, in her stand up that when she came back from school, she would have these very odd behaviors such as rolling in the living room, and the parents never thought what to do with it. And it was, I mean, she was like 12-13. So it's not like a six year old rolling on the floor. But she needed something to calm her nervous system down. And or she would be in in the yard, or like just picking flowers or earthworms. So but that's a solo game, like nobody's observing that and it's not even in the context of academics. So she was absolutely appeared semi well put together. But nobody really other than calling her different. They left it alone at that. So I think I'm going to use your use a quote, that you said that, when we say subtle presentation of autism, we mean their symptoms may be subtle, but effects of their life is anything but subtle. So this is your quote. I love that. So tell us a little bit about why you say that, which I think you were talking about, that the responsibility is on the autistic person to compensate for the failing to meet expectations. That could be one of them.

Donna Henderson: Right? That's absolutely true. I mean, autistic people and I should say I use identity first language, there's no right or wrong language. There are some people who prefer person first language and say person with autism. There are other people who prefer autistic person, right? So I'm using autistic person and that's a personal choice. It just I say that because it can be jarring for people who are trained exclusively in the medical model and aren't used to that language. But there's a mountain of research that shows that autistic people are at higher risk for are pretty much every problem, you can imagine mental health problems like depression, and anxiety and eating disorders and substance use. And they are at at far, far greater risk for suicidal ideation and actual suicide. They have higher rates of adverse life events, trauma and victimization. They have higher rates of so many different kinds of medical challenges, GI disorders, asthma, allergies, autoimmune disorders, diabetes, so many medical challenges. I mean, so that's why I say the effect on their lives is huge, whether or not they know they're autistic, they're at higher risk for so many challenges.

Sucheta Kamath: And, you know, as you were describing the list of, which is, again, going back to undetermined on interest all of our listeners, but when it comes down to diagnostic process, you know, even as a speech and language pathologist, if we are looking at a young patient or client and serve the needs, some of these questions may not even be asked, or it may not be part of education, why we should intervene or support. So, so I think you made your point very clearly clear that there's one, there's profound ramifications over lifespan. But two, I think the personal insight is very critical. So that you're advocating you're on behalf of yourself, but the very skills that go into advocacy are challenged. So can we talk a little bit about some, some details about the and you also described in your one of the presentations is autism radar, how to expand this autism radar. So there's, of course, in terms of the diagnostic process, there's a persistent deficits in social communication and social interactions across multiple contexts. But the second part is the restricted repetative patterns of behavior, interest, or activities, as manifested by at least two of the many that are listed. And I don't want to get into that. But so when we talk about can anybody who is not a psychologist, diagnose people with autism disorder spectrum disorder?

Donna Henderson: Yeah, I mean, depending on where you live, if you are legally allowed to make mental health diagnoses, then you can diagnose autism, so many different types of therapists, of course, you know, psychiatrist and neurologists, pediatricians, in theory, although I don't see them, diagnosing autism very much, they often refer out, it absolutely does not have to be a psychologist or a neuropsychologist. And it's sort of part of my personal mission, to help more mental health clinicians get comfortable with this know what to look for, know how to look for it, and get comfortable diagnosing it. And it's there, a lot of clinicians are intimidated by autism, they didn't get good training about it. They feel like it's overwhelming and scary, and like they're giving bad news if they even bring it up. And it's sort of my personal mission to help them get over that. So that we can do all things better by these people.

Sucheta Kamath: So, so then let's talk a little bit about a subgroup that often is very readily camouflaged, which is girls and women. Can you talk a little bit about the difference? The way? I mean, the incidence rate is greater in boys. Correct. And but the presentation is even less obvious in girls. So how does that impact? Or what what is the presentation? And how does that impact in them receive proper attention and care?

Donna Henderson: Sure. So the the easiest way for me to sort of highlight some of the differences is to quickly run through the diagnostic criteria, if that's okay, great. So, as you said, there's two categories. And the first category are social and communication differences. And there are three in that category. And you have to meet all three. And the first one is about reciprocal interactions. And people think this means somebody who is completely disengaged and lacks empathy. But what it really gets at is everything about the whole back and forth flow of social interactions, intuitively knowing how to greet people how to respond to greetings, sharing personal information, showing interest in other people, understanding other people's perspectives, giving context to people, just everything about this sort of intuitively getting into somebody else's head and knowing what's going on from their perspective. So and it's not as easy as can they do it, but how do they do it? and how effortful it is. And so what we know about a lot of autistic girls and, and the research is on the girls, but of course, anybody along the entire gender spectrum can have this less obvious presentation of autism. So we should say that is that they, they have better functional social interaction skills than the boys do, that they are working very, very hard to pull that off. And their prefrontal lobe in particular is working, they are going through decision trees, they are planning, they are processing making decisions. And so it uses up a lot of sort of executive functioning space, if you will. It's effortful, it's exhausting, it's anxiety provoking. So you have to understand their inner experience, it's not enough to observe their behavior, you have to know what's going on underneath. So that's the first criterion. The second one in the social and communication category is nonverbal communication. So that's, you know, eye contact gestures, facial expressions, all of that sort of thing, reading other people's and giving off your own. And what people usually think this means is somebody who completely lacks any eye contact are has totally flat effect. And you don't get that a lot, especially with these bright girls, it can be restricted an effect or blunted effect or an effect that doesn't necessarily match the situation, their rate of speech can be unusually slow or unusually fast. They might have difficulty reading other people's facial expressions, the research suggests that they're they do pretty well at the expressive effect, although of course, again, they're they're putting effort into that. And I've had so many girls and women tell me, oh, yeah, I have to consciously remind myself smile now. Put on your sad face. Now, again, it's taking up executive functioning resources to do that.

Sucheta Kamath: And you know, one thing, if I may interject, I was watching in preparation for this, you know, like watching TED talks, and I think Niamh McCann is her name, who talked about this, her own hidden Asperger's a presentation with girls, and she was talking about this point that you made about feeling exhausted, like always feeling that she is like on high alert, like Combat Zone Alert. And second thing I was in your presentation, one of the things I heard you talk about which I think this, this lack of reciprocity, or reciprocal interactions can lead to people perceiving that you are actually clueless, oblivious, but more importantly, rude and mean, and a narcissistic, like being called things that have huge negative implications when it may be simply, it's a autism spectrum disorder. So that to me is also can lead to a lot of exclusionary behaviors or people thinking, Oh, you think you're all that? Let me show you. So you know what I mean, it can lead to you getting people's wrath, sometimes.

Donna Henderson: It's so true, especially so if you see a boy who's overtly odd, and like, never makes eye contact and is talking about, you know, airport codes all the time, sort of this stereotypical understanding of autism. And he says, something that you feel is rude, you're going to cut them a break, right? But if you see a girl who's well dressed, has good hygiene, has decent basic social skills, you know, says please, and thank you and all that. And then she's overly blunt. You're not going to cut her a break, you're gonna think it's it's part of her character in a negative way. And so these girls get judged a lot on that and misunderstood. Yeah. And that TED talk you mentioned, it's one of my favorites is called Copy and Paste, copy and paste. Yes.  She's all kinds of adorable, right? This girl is so beautiful, too. Yes. Right. And she's well spoken and adorable and engaging. And you it's just not what people think of as autism. So it's a great one for people to watch.

Sucheta Kamath: And so before we move on to the next after the reciprocal interactions, but I will also wanted to talk about, particularly in my practice, I saw a lot of that impacting empathy for suffering. So if you have this, you know, nuanced deficit. And if you do not have advocacy skills, or you may be genuinely unaware that you're even presenting this way, people are treating you poorly, but they also are refusing to help because they have this attitude of that will teach you a lesson. So I saw a lot of that with the teens that I worked with, and particularly the Mean Girls effect was the worst I had a young woman who was in a private school and definitely not picking up on a lot of subtleties of how people are treating her, but always felt that she would she try to join a club, and this was her freshman year and every single club, they would say that it's full. Now there was no I mean, no reason the club would be full, but she literally believed them, and would go to the next one and try the same thing. And so finally, when she came, this was two weeks after school had started, she said, I don't know, somehow I missed how, how to belong to a club, because all clubs are full. So anyway, I reached out to the guidance counselor, and I'm like, What is your protocol? Can students not join? She said, there's no nothing called Full like, it's not based on number of students, she did not know. But they just did not want to have her there. And then the art of ways they, they went out of their way to do that. So I bet you have a lot of experience in this, how do these children, particularly these young teenagers present themselves in your sessions?

Donna Henderson: Well, one on one with a supportive adult in a quiet environment, the best case scenario for most of these Yes. And so I often do notice, you know, some quirky little things, but quite often, they are unbelievably engaging, and delightful and fun to interact with. And they're at their best, and clinicians have to remember, it doesn't matter what they're like in our offices as much as what they're like with their peers. And so this whole idea of you can just tell if someone is autistic in your office, you have got to throw that out. And I still fight that one, you know, but you because we have this sort of deep, deep, deep idea, you'll just know if they're autistic. And and that is not true for these girls, you have to look at the data and the data is history, what they're like, what their peers what they're like out there in the world, not necessarily in our offices. 

Sucheta Kamath: Do you request them to provide you with a video? How do you gather information about that?

Donna Henderson: Yeah, so interviewing is far, far, far, far, far, far more important than social cognition tests. Our social cognition tests are not great, they're getting better, but they're not great. And so I interview a lot of people, I interview current teachers, I interview prior teachers. So if somebody's in ninth grade, their teachers don't really get to see them in unstructured interactions with their peers. So try, right. So I'll say to the child, and to the parents, who's your who's an elementary school teacher that got you that might remember you, I have never once not one single time, called a teacher about a prior student, and had that teacher say, I don't remember that kid. Teachers are amazing, like I barely remember yesterday. And teachers can remember a kid they had 12 years ago. It's unbelievable to me. So it's those elementary school teachers. I look at report cards old, especially elementary school report cards for little signals of something that was going on. And I'll interview anybody that their friends, parents, their grandma, Girl Scout leader, I just talked with the girl and her parents about who in your life has seen you interacting with your peers that I can talk to. And, importantly, I interview the girls themselves to understand their inner experience that is absolutely essential. And the best, easiest example of that is eye contact. So many of these girls make very typical eye contact, you wouldn't notice anything unusual about it. But if you ask them, what's eye contact, like for you, they will sit they'll have a Yeah, it's exhausting. Or I don't mind it, but I have to keep reminding myself or I hate it. It's stressful. But I know people want it, they'll they'll give you something whereas non autistic girls, they'll be like, Oh, it's eye contact. I don't think about it. It just happens, right? They don't even understand why you're asking this question.

Sucheta Kamath: And you know, this is the difference I see between young men and women that I have worked with. Young men are oblivious to the this insight about how hard a girl will say she has worked on her eye contact, the boys wouldn't even put that effort. They're not giving eye contact and they're not aware of the effort that one might need to put or they may not even place the value that other people want it. So one question that popped into my head is Why is it so? Is it the socializing of the girls that really kind of there is awareness that I must exhibit these skills, but I don't have them. They're not natural to me is that Why they they even have more a simulated skill set than the boys do?

Donna Henderson: Yeah, it's probably there are probably multiple reasons for it. But a big one is sort of how they are how we raise girls as opposed to raising boys and how much more social girl world is and boy world. And you know, I had a girl in my office today, I think she is 11. And she eats lunch with the boys at school, which for some reason is upsetting all of her teachers and her parents, like I don't get why everybody's bothered by it, but they are. And I asked her, you know, what makes you choose the boy to the boy table or the girl table. And she said, the girls are all talking about pop culture and their problems and this and that and their feelings. And she said, I hate it. I don't understand it. It just doesn't resonate with me at all. And the boys, they talk about two things cars. She said, And the other thing she said, and this is so true. And these are my words, not hers. But this is what she said, basically, in girl world, there's no forgiveness, if you commit a social faux pas, especially girls from like fifth through eighth grade, you know, that middle school era, they're unforgiving. Whereas boys don't care, they get over it, she actually said you could punch a boy in the face, and then he'll still be your friend and he doesn't care like, and it's true, I just think is so different. And especially in those middle years there.

Sucheta Kamath: I love that this just reminded me of a clip, of a dating clip. So I don't even remember the show. But the two people got together and I think the boy had had was on an autism spectrum. And he it was like a, you know, as I said, date. So he, there were prompts on the table to ask questions. And the question was what are named three favorite things. And so of course, the boy says, My first favorite thing is Batman. second favorite thing is trains. And this is a grown up, like, you know, like a 26 year old. And the third thing is chocolate milk. And then he turns to her and say, What do you think about my favorite things? And she said, I don't like them. He gets up and leaves. He said, If you don't like Batman, I don't like you. Yeah. So in that way, it is kind of to me, I call them all people, you know, artistic persons, individuals as the most golden hard hearted individuals, because their feelings and emotions are transparent, and there's genuine, no malice. 

Donna Henderson: So I just really appreciate that. I agree. And the other thing that I think that example brings up is the autistic communication preference is often to be very direct, they don't do as well with indirect communication, implicit communication, figurative language that's harder for them to express themselves that way, and to understand when other people communicate that way. And so they have this very direct communication style which that story beautifully portrayed. But non Autistics perceive that communication direct as rude or blunt or hurtful and it's there, I agree with you, they don't mean to be hurtful in that moment. It's just a style preference. And it's not that theirs is better or worse than ours. I'm saying hours I'm a non autistic woman. It's just different, you know.

Sucheta Kamath: And when people you know, Steven Pinker many, many years ago wrote a paper of indirect speech, the veiled communication and evolutionary purpose of veiled communication. Why did we begin to hide our intent, so when you could really so it was a sophisticated, what way of yielding collaboration and cooperation from others. So one of the things that the disadvantage I see and when I do the metacognitive training with autistic persons, this is what I talk about is what is the benefit of certain modifications to your communication because ultimately, communication is a means of yielding a community or community where you cooperate, and others cooperate with you. So you may not want to be friends with them or you may not want to like them. But if in the workspace, you want to collaborate at home space, you want to collaborate, and collaboration is one of the strongest ways to reduce a burden, right personal burden. And so it is really interesting to me, I was wondering if you have any talks about this idea of my preferred communication is direct, which may present me as a blunt, insensitive person. But should I also think a little bit more of intent versus impact?

Donna Henderson: Absolutely. With a major caveat. And yes, that is, as long as the burden of change isn't all on them. And that's what we tend to do. You need to change to fit into our world. And ideally, perfect all adjusting to meet each other halfway. And I can give you a great personal example of that if you'd like. Yes. So my family there are I have three children two are autistic one is not. And so on my side at the dinner table, it's me and my non autistic kid. And then on the other side of the dinner table just happens to be the two autistic kids. And I say kids, they're young adults, didn't plan it that way. That's just how we're visits. And my husband's is the head of the table. So one day, my non autistic kid was telling a story, which admittedly was not the most fascinating story. But I was watching my two autistic kids that they were looking down at their food. And they weren't looking at her at all, while she was telling this story. And I was getting more and more annoyed on her behalf, because it felt rude to me as a non-autistic person. And so after a few minutes, and this is going to shock people, but this is how we talk in my family. It's not for everybody, but it works for us. I love it. I said, Hey, autistic people have a little eye contact over here for the non autistic people, right? And we all laughed. And then they rightfully put me in my place. And said, we have to make eye contact out there in the world all day long. And we do it because non autistic people need it. Why should we have to do it in our own home? And they will, right? Like, it was incredibly ablest of me, right and never heard to me, just can they get a break? I need it. Like, why should they have to meet my needs? Right? Yes, it was. And so just being able to be open and talk about this stuff openly with this idea that nobody is right or wrong. We're all just trying to find a middle ground here that we can live with.

Sucheta Kamath: And, you know, to me, that is such a profound example of how to do it. Well, I don't think like I think people think that you become a person and come out and interact with the world, you know, like, we need to like just okay, like, oh, very Stacy, well, she's gone on a retreat to change herself, and then she will be brought back. And then Tara, you know, I love this idea that you can get into these difficult spaces and say, I needed a little eye contact. And then your children being able to say, but I'm exhausted, I'm unable to give. But that doesn't diminish my engagement or participation. And you say I got it. Right. That, to me is profound, wonderful, excellent communication. That's what we want.

Donna Henderson: And that's just eye contact. And you can just talk about that all day long. Because I can't tell you how many autistic students I've worked with whose teachers get annoyed with them, because they don't look up at the teacher when the teacher is lecturing, but they can focus better when they're not looking at her. And they shouldn't be forced to look at her or to be judged for not looking at the teacher, right. And at the same time, they need to learn that in certain conversations, like in a job interview, if you don't make eye contact, it's not going to go well. And there are times when you do kind of need to suck it up and do things in a way that you don't love, right? And it's a matter of and this goes back to camouflaging. camouflaging isn't good or bad, right? It's useful, but if overdone, it's too exhausting and stressful. So the idea is to know, when you're camouflage, and when you should camouflage when you can drop the mask, how it all feels, so you can be in control of the whole experience. 

Sucheta Kamath: You know, you know, this reminds me of my interaction with my husband. When we drive, like when I'm very animated, I like to look at people. And I'm driving and we have just come out, come back from a party and I'm driving and I like to look at him. And he says, Why do you have to look at me to talk to me just focus on the road. I'm like, but I want to see your expression. And so I think this is such a interesting thing because I am like, eye contact hog and I think that particularly informs my lens. So I can see being a little judgy of people if they're not providing what I am craving for without really thinking or what am I compromising so that they receive what they need. So really fantastic point about that. So we still have two more diagnostic criteria that you were talking about the so can we talk a little bit about the relationship management, which is the second part of the first part, diagnostic process.

Donna Henderson: It's the third part. So understanding communication, we have interactions, reciprocal interactions. And number two is nonverbal communication, which we briefly talked about. And then the third one is relationships. And people think that means somebody who doesn't want friends or doesn't have friends. And that's not the case. And you know, most of these autistic kids have friends or have had friends, they may have difficulty making new friends, or deepening the friendships or maintaining the friendships, they may have trouble understanding different relationships, having healthy relationships, managing conflict, so some aspect of relationships, it's not that they're just friendless. And so that's an important thing to know. And particularly with the girls, the timeline here can be very different. Because in elementary school, a lot of times the moms support friendships, friendships are based on who lives on your street, who is your mom's friends, your friend, who's in your Girl Scout troop, right, who's in your class at school, and there's a lot of support and scaffolding for playdates and around fifth grade, sixth grade, that goes away, and the girls have to scaffold for themselves. And at the same time, playdates and time spent together becomes less structured, it's less about playing a game, and more about interact, talking back and forth talking. And that's often when we see the trouble with relationships really, really become problematic. So those are the three social criteria.

Sucheta Kamath: And you know, sorry, I took a little bit out of order. So I forgot we already addressed the nonverbal communication. So I think one thing I was curious about, so this, these three components that we you just described, I think that is under the social and communication category. And then we have the second category. Can you quickly talk about that? And, you know, a two point, I think, what is the goal of diagnosing? And then what does what is the goal of intervention or support that we provide? 

Donna Henderson: Yeah, yeah, I know, I know, we don't have much time. So I'll just really briefly cover. So the second category, repetitive and restricted behaviors, there are four, you only need to meet two of the four. The first one is behavior that's repetitive, and it can be movement, speech, or use of objects, it doesn't have to be something as overt as hand flapping, it can be pacing back and forth, watching the same TV show over and over and over again, reading the same book over and over again, making lists, you know, obsessively making all kinds of lists, because it's fun. So there's a wide variety of stuff there. Number two is flexibility. And it's not that somebody's inflexible every moment of every day, and is a big behavior problem, but they have some vulnerability to black and white thinking to getting stuck in their thinking, being literal to being a rigid rule follower, having difficulty with change or perfectionism. So the third one is interests. And in sort of the stereotypical autism presentation, we think of odd interests, like orange traffic cones, or airport codes. But with a lot of these girls, it's typical interests that are really, really, really intense. So they might pick somebody and pop culture, like, you know, a k pop group or reading animals, Warrior Cats is a big one, you know, and then they just get really, really intense about it. And then the last one is sensory. And, you know, with sensory stuff, people think of our five main senses, but there are eight senses. It's important for people to remember about proprioception, vestibular and the most important one of all interoception, which is your ability to sense what's happening inside your body, for your emotions and for your homeostasis, like knowing if you're hungry or if you're tired. So that is like the fastest possible overview.

Sucheta Kamath: Sorry, listeners.

Donna Henderson: I could not have done it any faster. And the so you also asked the purpose of diagnosis and the point of intervention.

Sucheta Kamath: I was gonna say one quick comment about I know you know, So you are listing This is terrible, but you know, we I have very deep interest in watching. So some shows again and again does that mean, which I had not thought about.

Donna Henderson: So anybody can have any of these symptoms, right, I have some sensory sensitivities, and my husband accuses me of being rigid sometimes. Right, so having one or two of these doesn't make you autistic, it doesn't even make you a little bit autistic. It's somebody who has the whole picture. So this is where you have to step back and look at the big picture of a person right? to wonder if they're autistic.

Sucheta Kamath: And so bringing back to your point about what is the purpose of intervention and support?

Donna Henderson: Self understanding, it changes the narrative, right? You know, we just, I think, a main point of adolescence and young adulthood, especially, is to understand who you are as a person and who you might be friends with, and how you might contribute to this world. And what's a good way for you to spend your life like to start to figure all this stuff out and knowing if you have a different kind of nervous system, and specifically, how it's not just whether or not you're autistic. But what does that mean to you and for you, because you're different from every other autistic person on this planet. It can help them understand who they are, and you've talked about self advocacy, can't self advocate, if you don't understand who you are and what you need in non judgmental terms. Right. I think it's so essential.

Sucheta Kamath: Well, I cannot believe I have taken up so much of your time talking about the front loading all these questions about the the process of understanding the presentation and the diagnostic process. I'm blaming myself for not thinking about the future self of Sucheta in 45 minutes. So here we are wanting to talk about two things as we close. Number one, if you can quickly touch up on this idea of you know, how do how does one conceptualize autism and seeing it through the neurodiversity lens? What do you think about the term neurodiversity? And then we'll close out with your any recommendations you might have for us?

Donna Henderson: I mean, I I'm, I'm a big fan of the whole concept of neurodiversity. Absolutely. And, and I acknowledge that it's not for everybody, because there are people who have the classic presentation of autism who are challenged in such deep ways that they need 24 hour care and supervision. And I understand how some of those people and the people who love them are not on board with the idea that this is all neurodiversity, I get that. And I also see that for a lot of autistic people, this is not that there's something wrong with me, it's just that I'm different. And and that brings with it a lot of strengths, as well as some challenges.

Sucheta Kamath: Well, I think the the bottom line conclusion I have received from you, your work, your books, the way you present is this incredible compassion and much larger lens than 30,000 feet view. Because to your point, I think there are multiple ways we behave, think act and our thinking and feelings are invisible. And so if we judge people simply by their behaviors, we are boxing people in too quickly. And also, particularly when there's so many negative assumptions about that. Those labels, so as we close, what are a few recommendations you have for our listeners, as they can learn from you and what has influenced you to become this incredibly knowledgeable and thoughtful person. And it doesn't need to be of course professional work.

Donna Henderson: So gosh, asking me for book recommendations is like torture because I want to give you my favorite 50 books, but okay, I'm gonna, I'm gonna give you three, okay. And only one of them is directly related, but the other two are closely related. So What I Mean When I Say I'm Autistic by Annie Coto, it's okay great, because you can like to read things by autistic individuals is the best way to understand this and Annie's book is just fantastic. So if you're going to read one book to try to understand this, What I Mean When I Say I'm Autistic. I recently read The Extended Mind by Annie Murphy Paul. love that book. Oh, can you please interview her for me? 

Sucheta Kamath: Yes, ohmy God.

Donna Henderson: Oh my god, that if you want to understand thinking and executive functioning and how to help, oh my god, read that book. I get such a beautifully written book. Amazing. And then the last one I would say is one of my all time favorites is called Tiny Beautiful Things by Cheryl Strayed. And she's the woman who wrote Wild. Oh, yes, of course. Yeah, people have read Wild but oh Tiny Beautiful Things. She actually did an online advice column for years, called Dear Sugar. And so that book is a collection of letters people wrote in her responses and they're, they're detailed, they're not quick little, like, what do I do when I get a gift I don't like they're much more detailed. And the reason I love that book so much, it is an absolute masterclass in validation, and how to validate somebody, like, truly, deeply validate them no matter what, even when you're gonna then disagree with them. And I say near and dear to my heart for that reason.

Sucheta Kamath: Oh, fantastic. Anybody who gives has an advice column, you know, because to appeal to multiple people, as you're thinking about giving advice, you have to really think about multiple perspectives. Well, thank you so much I have thoroughly enjoyed and learned so much from you. And I think I will say the same for our listeners who probably are going to request that you come back. So I will reach out to you again in six months. So maybe we can talk about, particularly your approach to managing these challenges in autistic individuals. So thank you again, Donna, for being on this podcast and providing us with great insight. And listeners. That's all the time we have for today. Thank you again for tuning in. And these are important conversations, as you can see, that we are having with amazing, incredible, knowledgeable experts who are passionate about the work they do and the change they bring and help us become better people. So definitely, if you love the conversation, leave us a review, share this podcast with your friends and family. And definitely stay tuned until next time. So thank you once again, Donna.

Donna Henderson: 

Thank you. Thank you for having me.