Recognizing Less-Obvious Autism with Donna Henderson & Sarah Wayland

Debbie Reber  00:00

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Donna Henderson  00:25

I’ve seen many, many reports rule out autism without giving any explanation whatsoever. They describe an autistic kid all throughout the report and at the end say Yeah, but it’s not autism because she made good eye contact or because he has this sense of humor, which are not rule outs.

Debbie Reber  00:44

Welcome to Tilt Parenting, a podcast featuring interviews and conversations aimed at inspiring, informing and supporting parents raising differently wired kids. I’m your host Debbie Reber. With an increase in the number of people receiving an autism diagnosis in recent years, both among children and adults and especially among girls and women, as well as a lot of uncertainty among parents trying to tease out if their child is autistic. Or if another neurodifference like giftedness or ADHD or anxiety explains why a child is struggling. I am so grateful that doctors Donna Henderson and Sarah Wayland have written their new book “Is This Autism?” “Is This Autism?” is truly a game changing labor of love in which Donna and Sarah clarify many ways that autism can present particularly in people who camouflage to hide their autistic traits. And what I love about this book so much is that it walks us through the diagnostic criteria, but in a way that helps readers have a much deeper understanding of how those criteria can and should be interpreted. Donna and Sarah are on a mission to help parents and clinicians ensure that we don’t have another lost generation of autistic adults whose diagnoses were missed. We cover a lot of ground in this extra long episode, including why it’s so many people, including women and girls and people in marginalized groups are being misdiagnosed or simply missed, and why it’s so important that we look beyond the stereotypes of autism and gain a rich, nuanced understanding of the autistic experience. A quick background on my guests before we dive in, Dr. Donna Henderson has been a clinical psychologist for over 30 years and is part of the Stixrud Group in Maryland. She provides neuropsych evaluations and consultations for children, adolescents and adults who would like to understand themselves better. Donna is a sought after lecturer and provides neuro diversity, affirmative training and consultation for other health care professionals. And Dr. Sarah Wayland is the founder of Guiding Exceptional Parents and the co-founder of The Behavior Revolution. As a special needs care navigator, certified RTI consultant, and parenting coach, she provides neurodiversity affirmative support, education, and community for parents of neurodivergent children and young adults with ADHD, autism, learning disabilities and other brain based differences.

Debbie Reber  03:12

Before I get to the conversation, if what I’m doing here Tilt Parenting and the guests I bring on to the show are providing support and encouragement and hope for your family. And you are ready to dive deeper with me and uplevel your parenting progress. I invite you to check out my membership community, the Differently Wired Club. Think virtual office hours, coaching calls, expert guests, monthly themes, connection with other parents like you and much more. I used to only open the doors three times a year. But now there’s an enrollment window open at the end of every month, visit tiltparenting.com/club for all the details. All right. And now here is my conversation with Donna and Sarah.

Debbie Reber  03:59

Hey, Donna and Sarah, welcome to the podcast.

Donna Henderson  04:01

Hey, thanks for having us.

Sarah Wayland  04:02

We’re excited to be here.

Debbie Reber  04:04

I’m excited to talk about your incredibly comprehensive, timely, so very important book. But before we get into that, you’re both new to the show. So I would love it if you could just take a few minutes and tell us a little bit more about your work in the world and your personal why. And maybe as part of that how you came together to collaborate.

Donna Henderson  04:22

We have a good story about how we came together. I’ll start. This is Donna. I’ve been a clinical psychologist for over 30 years. And like a lot of clinicians, I received almost no training in autism at all. And frankly, that was fine with me. I wasn’t interested in autism. I was sort of confused by it, intimidated by it, and I avoided it and I have this idea. Well, if somebody’s autistic, they’ll go to an autism specialist. And I lived for a big chunk of my career very happily that way. Until one day I have this aha moment. And that story is probably too long till now but I realized, oh my god, there’s a lot of autistic people who don’t know they’re autistic, they have this less obvious presentation, their parents don’t know, their teachers don’t know. And they are going to wander into my office. So I need to understand this. And I was particularly interested in these autistic people who had been missed or misdiagnosed, and were really vulnerable. And so I started learning about it. And that was about 15 years ago. And around the same time, as I was learning, I started looking at some of my own children. I have three kids, and two were eventually diagnosed with autism. And people always often asked me, which came first? Did you realize you were raising autistic kids so you developed a professional interest in this? And actually, for me, it was the reverse, I started learning at work, and realized, hey, I have this going on at home. Even when I went through this whole process, I thought it was just me who had avoided autism and who had been intimidated and confused by autism. And as I started teaching other health care professionals, I realized this is rampant among clinicians and educators. People do not get training about this, and a lot of people are either overtly or secretly confused and intimidated by it. And so it’s just become a huge, huge passion for me along with Sara to teach healthcare professionals and educators and parents and autistic people, specifically how to recognize and understand Autistics who camouflage my practice. I work at the Stixrud Group in Maryland, where I do neuropsych evaluations and consultations.

Debbie Reber  06:39

Yeah, and we are fans of the Stixrud group, I’ll just say that we’ve had Bill on the show with Ned to talk about their awesome book. So I love the work that that group does. So I love that association. And I want to hear more about the avoidance piece. But Sarah, would you start by telling us a little bit about your story?

Sarah Wayland  06:57

So I came at it in kind of the reverse situation, which is that I had two boys, the older one was first diagnosed with language delays in ADHD. And my younger son came along and he was diagnosed pretty early with autism. I think I say he’s a more effective self advocate. But basically, he needed help. And so it was, I think, clear that he is autistic. And when he got diagnosed, I started looking at the criteria. And I was like, Oh, my, I wonder. And for a while, I was just like, nope, nope, older kid does not have autism. And then I was having Thanksgiving dinner with a friend who’s a school teacher. And she and I told her that our younger son had been diagnosed and she said, What? She said, No, he’s not autistic, his brother, very Most definitely. And I was like, oh, so then I went back to the developmental pediatrician who had diagnosed both of them and said, What do you think? And he’s like, What do you think? Which is his style, actually. And I was like, Well, I think I think the older one is autistic. But that thing Donna was saying about I did not know. So I came at this as a parent. Now my training is in research psychology. So I didn’t know the literature, especially language stuff. That’s what I studied before, it was language issues. So I had that research background, but I was a parent. And I did not know that some neuro psychologists wouldn’t look at autism as part of the package when you take your kid in for an evaluation. And when I started my business, which is guiding exceptional parents, I work with parents of complex kids. And when I started my business, I started realizing, Oh, that was 10 years ago, most neuropsychologists do not like. I would call them up and say, do you diagnose autism? And they would say, No, that’s not what I do. And that blew me away. That’s how I came to knowing how important this is.

Debbie Reber  08:58

Yeah, I mean, it’s really fascinating to hear you both share this because it seems that if a neuropsych is omitting autism as something they’re considering, then how could they enter any assessment process with objectivity or without an agenda? That’s really confusing to me. I don’t want to go too far off, because there’s so many things I want to talk about. But I do find this interesting. You mentioned the word intimidation. Can you just say a little bit more about this reluctance or unwillingness to explore autism or to learn more about it as part of one’s individual practice?

Donna Henderson  09:33

I think it starts with the training and how lacking the training is. And that’s not just my experience. I’ve talked to so many clinicians who have had that experience where they say, Yeah, I got almost no training and autism. And now there has been research where one article I can think of, they interviewed 500 psychotherapist with a variety of different psychotherapy backgrounds, and the overwhelming majority If these therapists said they had more training and were more prepared to deal with any other diagnosis of a similar prevalence, rather than autism, schizophrenia, bipolar, you name it rather than autism. So it starts in the training programs. And then what compounds that is if you have a supervisor who doesn’t do autism, that just normalizes it, and makes it feel okay. And I literally had supervisors who said to me, even as I started to explore the possibility of autism with my clients, I had supervisors who said, Well, I don’t do autism, you’re going to have to go ask somebody else about that, like neuropsychologists

Debbie Reber  10:40

I just find this fascinating, would people be looking for other diagnoses, and perhaps they would just be getting an inaccurate diagnosis, because they would be saying this is borderline personality disorder or?

Donna Henderson  10:51

So a few different things could happen, they could get a whole lot of other diagnoses, some of which are accurate, like maybe the child is also anxious, and also has ADHD, some of which may be inaccurate, there are quite a lot of autistic kids who get other diagnoses that don’t fit. And that could be anything from odd, oppositional defiant disorder to bipolar disorder, if they’re emotionally dysregulated. To a personality disorder, if they’re older, I’ve seen all of that be misdiagnosed, and people who are actually autistic. I’ve seen many, many reports rule out autism without giving any explanation whatsoever, they describe an autistic kid all throughout the report, at the end, say, Yeah, but it’s not autism, because she made good eye contact or because he has this sense of humor, which are not robots.

Sarah Wayland  11:42

I think there’s another piece too, which is that some of the marketing, about what autism is right by organizations trying to raise awareness about autism depicted autism in a very particular way. And so people thought of autism, in the sort of stereotypical ways that Donna just mentioned, I think that led clinicians to frankly, be frightened to tell a family that their child was autistic. And I think that’s a piece of it.

Donna Henderson  12:14

One more is, there is one test that I probably don’t even need to name because most people can just think of it that has been marketed as a gold standard. And it is absolutely not a gold standard. Absolutely not, in my opinion, particularly for Autistics who camouflage. And there is more and more research now showing that that test is not particularly useful with this population. And so not only does that hurt clients who are autistic and not getting recognized, but to the point of our conversation, now, it hurts clinicians, because there are countless clinicians out there who think if they are not as trained, they should not be looking for autism, and they are not allowed to diagnose autism. And that is absurd. It is just a test.

Sarah Wayland  13:03

And even the people who make the aid off the publishers and the original person who came up with it, say it should be one part of a comprehensive assessment that looks at many different aspects of the person’s functioning. And so even the people themselves say it’s not all by itself, what you we should be using to diagnose?

Debbie Reber  13:27

Yeah, this is super fascinating. And I want to share for listeners that later on in this season, I have an interview with Dr. Megan Neff, who I know you are familiar with and she has something called misdiagnosis, Mondays and we talk a lot about the co-occurrences or how things might look different ways. But I’d love to get more into your collaboration for this book. And we’re going to do that right after this quick break.

Debbie Reber  13:53

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Debbie Reber  14:43

You to have collaborated then for several years now on creating just such an important resource for the community. It’s a book that is just out. It’s called Is This Autism: A Guide for Clinicians and Everyone Else. Before we get into the book, I just finished reading it as a writer. I was in awe of what you must have gone through to put this piece of content together. It’s so useful, so important, and so comprehensive. But tell us how the project came about and how you two came to decide we need to get this out into the world.

Donna Henderson 15:19

Well, I guess, this is Donna, it started with me, I just was seeing one client after another that to me, they clearly were autistic. And they had been missed by previous psychological evaluations and everybody else in their lives. And I thought, Okay, I need to start educating people and I decided to write a book, I have ADHD. And I knew there was no way to know how I was going to do this all by myself, I work best with other people. And so I started writing, and at the same time, I started trying to figure out who my co author could be. And I went through about six months of this process that reminded me of that old PD Eastman book, Are You My Mother? Do you remember that book? A little bird is in a nest, and he falls out of a nest, and he wanders around saying to all these different kinds of animals, Are You My Mother? Are you my mother? Right? So I was wandering around in my head going, Are you my co author, or you might be a co-author or you might go up. And nobody felt quite right. And one day, Sarah and I were chatting, we were already friendly, not super close friends, but friendly. And it just hit me like a ton of bricks. You are my co author. And I started to ask her, and before I even got the words out, she said, Yes, yes, yes, yes.

Debbie Reber  16:33

Let’s hear your side of this story, Sarah.

Sarah Wayland  16:36

it’s funny because Donna, I remember early before, I think you even started writing, I think you were writing. Or you were just like, I don’t know if I should do this. I don’t know, this is really hard. I had a book called Big Magic by Elizabeth Gilbert. And Donna was talking about this book and how she’s feeling about it. I was like, she has to write this book, like this book is really important. So I sent her a copy of that book, so that she could know that she could make her own big magic. We didn’t know each other terribly well. But then, you know, she would call and say, Hey, what do you think about this better the other thing she was thinking about? And we chat about it? And I kept thinking, Oh, I’d love to work with Donna on this book. But I didn’t want to pressure her in any way. So when she asked, I was very happy, you are ready to go

Debbie Reber  17:23

That’s awesome.

Donna Henderson  17:24

You mentioned Bill Stuxrud earlier. And I’m lucky, lucky, lucky enough to be dear friends with Bill and I asked him how did you and Ned do it? How did you choose a co author? How do you move through this? And he gave me the best advice. He said you want somebody who has similar values, but different strengths, just like in marriage. And Sarah and I have similar values in that we have just a missionary zeal and a deep, deep passion to do this. And to do it well. But we have very different strains.

Debbie Reber  17:52

Yeah, that’s great. Sounds like a great collaboration. Tell me a little bit about then what the book is. And the subtitle, it’s, you say, for clinicians and everyone else, I read it, obviously, as a parent, but what was your highest goal in putting it out into the world? And how were you hoping it would change the conversation?

Sarah Wayland  18:11

So one piece was that when we got started, as you heard, Donna was having this experience that lots and lots of clinicians were not aware of autism and how it could present. And so she originally conceived of it, I think, as a book for clinicians. As part of getting ourselves ready for writing this book, one of the things we realized is we really, really needed autistic voices, as part of the book that we needed to make sure that the perspective of autistic people was in there. And so we were trying to think about how to do that, you know, should we have an autistic co author? How should we do that. And what we realized is, writing a book is really hard. Writing a book with another person is really hard. And adding an unknown person to the mix was definitely hard to think about. But we really wanted those voices. And so we actually got, as you read in the book, like they’re just there’s over 100 Different people who volunteered to help us understand what it’s like to experience these different aspects of the diagnostic criteria. So we wrote that, but it was so educational for me, to hear their perspective and then of course, reading all the research and trying to present that research in a way it was very important to us that this be extremely readable. We did not want it to be an academic tome that nobody would be able to read. We wanted it to be conversational, we wanted it to be relatable. We present the research in a way that is so and so apt University blah, blah, when their team or whatever we talk like that, instead of saying so and so 2019 describing the research that way. But anyway, as we worked on all that, for me, as a parent and me as a parenting coach, it’s so helpful to know what it’s like to experience this stuff. And it’s also very helpful to know what the research says about what’s going on here. So after a while, we thought, wow, that is going to be a book that anyone could benefit from. And that’s why we made it for everyone else.

Debbie Reber  20:35

Do you have anything you want to add to that?

Donna Henderson  20:37

I could probably talk for hours on it. But I want to amplify the point that Sarah made is we want it to be accessible, we want it to be very, very readable for parents, for people who think they may be autistic. To really understand it, we use the DSM diagnostic criteria as a structure. Because I personally believe that those criteria makes sense. If you truly understand the scope of them, and what to look for and how to understand them.

Debbie Reber  21:05

I do want to speak to its accessibility. When I read a lot of books in this space, as I’m sure that you all do. And it was very readable. The examples and the autistic voices, you included, added so much to a deep understanding of the many different ways that these different traits or characteristics could exhibit themselves. And I also loved that you included questions that any reader or any parent would want to know more about, it was very user friendly. So you achieve that, which is awesome, because I can imagine again, there is a lot of research at the end of each chapter, you have all of the resources like you guys went deep, but it doesn’t interfere with the reading process. You mentioned already, they make good eye contact, they have a sense of humor, it can’t be autism. Again, there are all of these criteria that you break down. But could you genuinely speak to some of the bigger themes of why you think so many autistic people are being missed or aren’t being recognized as autistic.

Donna Henderson  22:09

I sort of divided into three categories why we’re missing some autistic people. First is a sort of bias and lack of knowledge in the general population, parents and teachers really don’t understand what to look for. Some of them still think of autism as being like Rain Man. Some of them think of Sheldon from Big Bang Theory. So they might think of white males who are overtly quirky, that sort of thing. Girls, and some other groups aren’t as likely to get referred for an evaluation at all, and not as likely to have autism in the referral question. So it starts there. The second category I’d say is problems with our tools. We don’t have great tests, our rating scales, our self report measures and our social cognition tests are definitely getting better. But they’re problematic. And like I mentioned before about the A das and I’m not against the ADOS, I think it’s a very useful measure. Sometimes, I made Austria and I use it sometimes. But for the group that we’re talking about today, Autistics who camouflage it’s not super helpful. There was one study that was done last year, where a whole lot of autistic adults in the Boston area, these are people who were diagnosed as autistic in the community by various doctors, were going to MIT wanting to be part of research studies in autism. But to get into the study, it wasn’t good enough to have a clinical diagnosis of autism, you had to look autistic on the eighth off to get into the study. And the A das missed about 20% of the males and 50% of the females 50% of people who are already diagnosed, I’m just highlighting the problems with our tools. And so I do neuropsych evals. I love testing and numbers and statistics. But when it comes right down to it, it’s really about interviewing. It’s really about history more than our tests. And I’d say the last reason we miss so many people is problems with us, the clinicians, we over rely on tests in general. And on one test in particular, we assume if somebody was autistic, they would have been diagnosed by now, which is an absolutely terrible assumption. If you’re working with an older adolescent or an adult, they absolutely could have been missed. There is an entire lost generation of autistic adults. And the statistics are absolutely horrifying. And clinicians who work with adults are even less prepared to consider the possibility of autism. And there’s this assumption somebody would have caught it by now. Right. And I think one of the biggest things I see is this sort of vague idea that we’ll just know if someone’s autistic will just have a sense, they’ll be quirky or they won’t make eye contact or they won’t have a sense of humor. And so this idea of but they just don’t seem autistic, we have got to throw that out the window and look at the data. And by the date, I mean, the history and all the information you get from interviewing.

Sarah Wayland  25:11

There are some other reasons too, which is just thinking about different populations. So Donna talked about girls and women being missed. But there’s also BIPOC, right? Any racial minority cultural minority. And our testing, we say it’s not culturally biased. But even just getting the referral to be assessed can be harder for people in those populations. So we do miss those people, they are missed, the behavior is misattributed to other things. And their diagnoses come later. They do come much later. And those populations. The other thing that you had addressed earlier was this question of getting a different diagnosis, then autism. There’s this one study from the Netherlands, they went into an adult outpatient clinic, and looked at all the people who are coming into the clinic who had various disorders, and discovered that there was a an enormous prevalence of autism, undiagnosed in people with eating disorders, depression, all these other co occurring conditions that do come with autism. And it was shocking how many undiagnosed autistic people there were in that, then there’s also this diagnostic overshadowing thing that we talked about earlier. So ADHD, a lot of people get diagnosed with ADHD before they get the autism diagnosis. And it’s partly because it’s hard to tell gifted kids, they see that they’re gifted, but there’s two women who did some research on the prevalence of autism in gifted kids, and found that 8% of gifted kids were autistic. And then we have gender variation and things like that, where the proportion of autistic people is higher, and those things are identified before the autism. We attribute those things to being the reasons underneath whatever is going on. And don’t notice that there’s also autism.

Donna Henderson  27:15

Yeah, we really want to say to parents and teachers and clinicians, don’t keep blaming every little thing on whatever’s already been diagnosed, it’s essential to really think through it. And here’s a good example, if you have a little kindergartener who’s calling out a lot in class, then maybe that’s ADHD, right? It’s a good idea to look into ADHD and maybe to treat that ADHD. But if you have an 11th grader who is persistently calling out in class, and let’s say they already have a diagnosis of ADHD, and they’re well medicated for it, it’s I think too much to then automatically say that calling out in class is because of their ADHD, it’s maybe time to step back and see what else can be going on here. There’s a tremendous amount of that diagnostic overshadowing with ADHD and anxiety more than anything.

Debbie Reber  28:08

I just want to ask this question. I feel like I already know what your answer is. But this comes up a lot with the statistics of increasing the number of people who are getting a diagnosis of autism. Has something changed? Or is it just that we’re recognizing and identifying autism more easily now? Or has something actually changed in our neurobiology is evolution that there are actually more autistic people now than there were, say, 50 years ago?

Donna Henderson  28:37

Well, we can’t say that for sure. Right. And by the way, the CDC recently changed the prevalence to one in 36. That’s almost one in every classroom, right? I think we’re doing a much, much better job of identifying it. And we can tell that from the research people who are born after the year 2000 are far far far more likely to have an autism diagnosis than people born before the year 2000. And the older you are, the less likely you are to have received a proper diagnosis. There was one study from Kaiser.  Kaiser didn’t do the study, but they looked at 1.6 million charts for adults in Kaiser. And if the current prevalence rate of 2.77% is to be believed, and I believe it, you would expect 44,000 of those people to have been diagnosed with autism at some point in their lives. 44,000. And what they found was 1507 when it should have been 44,000. So not only are clinicians getting better at this, but the public is getting better at this and people are starting to realize, wait a minute, I’m autistic, and then they’re showing up at our offices and self advocating and so we’re playing catch up right now we’re playing catch up with all these misdiagnosis and that’s why it feels like it’s all too much. I think that’s part of it.

Sarah Wayland  29:58

I think that’s part of I think like you said, we can’t know the answer to the other piece. Something I’m noticing certainly is kids who experienced their early social world during the pandemic didn’t get the kind of social training that other kids get. And I do wonder what the impact of that is going to be. It’s a very critical period for social development. I don’t know what’s going to happen there. But we can’t do a controlled experiment, to say, oh, exposure to toxins or, you know, exposure to electronics or whatever, we can’t do that experiment. And so we’re just guessing.

Debbie Reber  30:36

Yeah, you do talk a lot in the book about the way it presents and girls, in fact, you have a section in the back of the framework chapters, what we’ve learned from girls, which is so helpful that you break it down that way. In the introduction of the book, you talk about how the understanding of autism has evolved so much over the last 3040 years, you talk about the female phenotype as being the most recent adaptation to a deeper understanding. And you also say, and now that’s changing. And I imagined, since you’ve started this, within the COVID pandemic, the understanding of gender and what’s happening with young people has really shifted. And so I just would love to know, how do you know when you’re done writing this book, because the conversation is moving so quickly.

Donna Henderson  31:23

Our editor just literally cut us off this morning. The second book is about to go to the printer, it’s already been indexed. And I’m still it’s this constant process of like, wait, wait, wait, one more change? Wait, wait, wait, one more article. One more thing. And I’m sure like, if I read either of these books a year from now, parts of it, I hope I’ll be proud of it still and feel like it rings true. And I think I will, but I’m sure there will be parts where I think oh, no, I didn’t know this back then just like, if I listened to a podcast I did a few years ago, I’m sure there are moments where I would cringe at my ableist language. We’re learning as fast as we can, right?

Sarah Wayland  31:58

I mean, I’ve already had that experience where I am working with a client and I think, oh, this section of the book would be helpful for them. So I go pull it out. And I look at it on like, I used to work in software. And so we had a moment in every project where we would say you have to shoot the engineer and ship the product. And so Donna would say, oh, we need to go back and do this. And it was like, ideally, yes, but right now we have to shoot the author and ship the product. So it was really, really hard. And it’s changing so fast. That’s one of the things. Like I wrote a section on gender in the co-occurring Conditions Chapter. And I wrote it and Donna’s like, we don’t even need this, everybody knows this already. But I was terrified to write it. Because I know, our understanding is evolving so quickly, that I’m sure I got it wrong, I’m sure of it. Our understanding is changing so quickly that all I can do is let people know I’m doing the best I can. And at some point, we had to shoot the author and ship the product.

Debbie Reber  33:00

Yeah, I mean Differently Wired is now five years old, I was able to do a slight revision, a year and a half in with the paperback. And I did make some changes. I just went through it with a group of readers last month, and it was like, ah, there are some ableist language are just a sentence and like, oh, I would take that out. I would change that if I could. But that’s the world we’re living in right now. It is continually evolving. And we just keep learning and growing. That’s the good thing. I would love to talk about Part One. And we’re obviously not going to go into all the diagnostic criteria, but you have a chapter dedicated to each of those items in the DSM reciprocity, nonverbal communication, relationships, all the things that we know a clinician is looking for, so they can make a determination. Could you talk about how you approached those chapters and the way you unfolded? The criteria and what you wanted to add to the conversation?

Donna Henderson  33:56

I think we started each of those chapters with this is what people think this criterion means. And then we said, but here’s what it really includes. And it’s just a much wider variety than anybody is aware of. And then we tried to go into a lot of detail about that with examples, both vignettes and quotes from autistic people, we actually have a summary chart, a chart summarizing like the first column is the criteria. And the second is what people think it means. And then we go into what it really means. And we’d be happy to share that with you through the podcast page if you’d like because I think it’s a helpful overview for people.

Sarah Wayland  34:35

Yeah, just the examples. I think for me, it was hearing the individual experiences of each of those criteria. I’ll just highlight one that stuck with me, the section on nonverbal communication. So we asked people about gestures. We were curious about how they experienced gestures. I just remember this one comment about the hands. What do you do with the hands? I have To think about where my hands are, and how to hold my hands, I use gestures a lot when I talk. And I don’t think about my hands at all, I never think about my hands. And the fact that they’re having to think, what do I do with my hands to make it look natural. And it’s just so cognitive, they have to think about every little thing. And I don’t even know what I’m thinking about it.

Donna Henderson  35:25

I’d love to share a story about that. And I don’t remember whether or not this is in the book. But this is an example that I just remember. So clearly, I was working with a middle school girl, super, super, super bright, straight A student, her family hiked a lot. And one of the things her mother said was her whole life, every time we pass somebody on a hiking trail, she didn’t understand why we would say hello, even though we didn’t know them. And you know how when you’re hiking, and there’s no one around and you nod or say good morning, or whatever. And she never understood that. So one day, she was walking into the supermarket with her mother, and they passed a family that they knew pretty well but hadn’t seen in about a year. So the mother stopped and chatted with the other parents. But the daughter just kept walking, even though the other family had the same age daughter, and they knew each other. So when the mother finally caught up with her daughter in the supermarket, she said, Why did you just keep walking? Why didn’t you stop and say, Hello? And the daughter said, Well, I don’t know. Let’s call her Abby. I don’t know Abby. And the mother said, Well, have you been to her house? Yes. Were you in the same girl scout troop? Yes. So she’d been in our home? Yes, you know her, you just haven’t seen her in a while. And the rule is when you know someone, even if you haven’t seen them in a while you stop and say a quick hello. And then the daughter said, so now we’re in the supermarket. Is the supermarket, like the hiking trail where I say hello to everyone? And the mother said, Well, no, that would be weird. You don’t say hello to everyone in the supermarket. And this brilliant girl burst into tears and said, there are so many secret rules. How am I supposed to learn all of these secret rules. And that was the moment this mother realized she is fundamentally different from me, because most of us non autistics do not think about social interactions that way at all. They’re pretty intuitive.

Debbie Reber  37:14

Yeah, that story is in the book. And I loved that example. So thank you for sharing that. Because it really does shed light on the internal experience. And that’s something that jumped out at me, because it was so simple, but important. You wrote internal experiences key, the DSM criteria for autism is based on observable behaviors. And so you’re really opening up our eyes to what’s really going on underneath and how it can look so many different ways.

Donna Henderson  37:42

Right? Right. Eye contact is a great example of that. So many clinicians just notice, yes, she met my gaze, her eye contact is, they use the word appropriate, which I hate … typical, would be better. But few clinicians ask the individual what is eye contact like for you, if you ask a non autistic person, when eye contact is like, they will say, Oh, I don’t really think about it. I don’t have any feelings about it really, maybe mildly positive. But so many autistic people will say I hate it. It’s unnecessary evil, it’s distracting, it makes me uncomfortable, I have to remind myself to use it. I never know if I’m doing it, right. So even if the external behavior seems typical, the subjective experience is quite different.

Sarah Wayland  38:25

And there’s also a kind of a sensory piece to the eye contact thing. So like my older son says, I can listen to you, or I can look at you, but I can’t do both. And so for me, like when he’s talking to me, then I’m like, look away from me. I don’t care, whatever you need to actually process what I’m saying. But his teachers used to take it quite badly. You know, they’re like, he’s not paying attention. And I learned every year to say, if you think he’s not paying attention, ask, and they would always tell me at the parent teacher conference, Whoa, he’s always listening. So, but we non autistic people take it as a sign of them not paying attention or not listening, when in fact, what they’re really doing is doing the adjustment, they need to be able to pay attention

Debbie Reber  39:14

Yeah. And also, we might take it as them not caring, right? I think there’s such a value placed on eye contact. You know, if we see a child making progress, like, oh, well, they’re making more eye contact because it makes other people more comfortable. I really love how you Yeah, again, you break this down and look explored from so many different angles to understand the underlying why behind these things. Talking about social reciprocity, this is something that comes up a lot is this idea that autistic people don’t experience empathy. And that seems to be a myth that’s out there. Could you talk us through that?

Sarah Wayland  39:50

One of the things I think it’s a myth that is very damaging for autistic people is that they don’t have empathy, right? So you hear people say oh, they don’t have empathy. And in my experience, most but not all, autistic people have incredible empathy. But there were people we quoted who said things like, if somebody’s sitting four cubes away from me at work, and they had a fight with their husband that morning, I can’t get any work done, because I can feel their unhappiness, right, and I just can’t get any work done. And a lot of parents will report, my kid is always reacting to me. They often don’t realize that it’s a reaction to their own emotion, they actually often don’t realize that. And then when we dig a little deeper, they realize, Oh, I was having a big emotion, and that my kid was tuning into that and having their own big emotion. So what I find is that these kids often have tremendous sensitivity to what’s called an effective empathy, which is just the person’s emotional state, right? But what is hard is to understand why they are having that emotion? So understanding, for example, let’s say I stubbed my toe, and I’m in pain or whatever. And my younger son has tremendous affective empathy, tremendous. And he would come in and be like, Oh, Mom, are you okay? Right. But he might not notice that I was grabbing my toe and holding it. And he might say, are you mad at me? So he wouldn’t know the underlying he would know, I was upset he would take that in. But he would have no idea that I just accidentally stubbed my toe. And that’s why I’m having that reaction. And that it’s not about him not understanding the underlying reason for the emotional response can then lead to all these miscommunications. But that myth of autistic people not having empathy is so damaging. It’s really, really unfair and hard.

Debbie Reber  41:53

I would love it if you could explain the double empathy problem, which you talk about, and that’s something people might have heard about double empathy, but they might not have a true understanding of what it is. But it really fits into that conversation about social reciprocity. And could you explain what that is?

Donna Henderson  42:11

So the double empathy problem was this idea that was put forth by an autistic researcher named Dr. Damian Milton, and there has since been research support for that. And it’s basically the idea that when people have different experiences of the world, they may struggle to understand and empathize with each other. And so we non autistics are the majority of the population, autistic people are the minority. So if you have an interaction between an autistic person and a non autistic person, so it’s sort of like a cross cultural interaction, so some things might go awry, there might be some misunderstanding. And inevitably, the person in the minority group gets blamed for being wrong in that interaction. And what the double empathy problem reminds us is, there’s no right or wrong, this is a two way street, we have trouble understanding anybody from so to speak the other culture. And one example of the research for this is the game telephone. Remember that game where you sit in a circle and you whisper in each other’s ears and see how the message stays the same or doesn’t stay the same. So somebody very cleverly took three groups of people, all autistic people, was group one, group two on non autistic people, group three was a mix of autistic and non autistic people. So if autistic people or if non autistic people are just better at communicating in general, you would expect that group to have done better than the autistic group, right? And then the next group would be in the middle. But that’s not what happened. The Autistic group and the all non autistic group were exactly the same in terms of how effective they were. And the mixed group was not very good at all. Right? And so it’s this cross communication. And the point is, nobody’s right, nobody’s wrong, we have different styles. And we all need to sort of find ways to meet in the middle, rather than making the autistic people do all of the changing and accommodating.

Debbie Reber  44:11

Thank you for explaining that. That’s a question that comes up quite a lot. I like to not assume that everybody knows everything that we’re talking about here. So thank you.

Donna Henderson  44:19

Yeah, I’d love to share this. I don’t know if my family will love that I share this story, but I’m gonna share it because it’s a great story about how, I think if you’re a non autistic person, you just like trying to understand cultures, you’re never gonna get there with not being ableist. It’s a constant learning experience. So this happened only maybe a year or two ago. My children are young adults, and we were sitting at the dinner table. I was on one side of the table with my non autistic daughter, we call that the ADHD side of the table. The other side of the table we call the artistic side of the table. My other two kids. My husband was sitting at the head of the table. My daughter who was next to me was telling a story, and admittedly it was not the most interesting story but still She was telling a story. And the other two had their heads down looking at their plates. And this was going on and on. And they weren’t even glancing up to give any indication that they were listening to her. I don’t know whether or not she cared. But I cared, I took it as a sign that they weren’t listening in a sign of disrespect. And at one point, I said, and this may shock some of your listeners, this is how we talk in my family, it is not for everyone, but it works for us. I said, Hey, autistic people have had a little eye contact over here for the non autistic people. And they laughed, and we all had a good laugh. And then they rightfully put me in my place, and said, We have to make eye contact there in the world, all day, every day, we shouldn’t have to do it in our own home, just because you want eye contact. And they were right, of course, not that I was wrong for needing eye contact, there is no right or wrong. But to have a an open conversation about how will we all get our needs met and not force them to meet eye contact at home. But give me a sense of when they’re listening, right. And there’s a million ways you can go with that. But I think that’s what we’re striving for.

Sarah Wayland  46:11

And just to add a little bit on to that. And one of the things that I think is kind of a myth is that we are all really good at communicating with each other. I don’t think even between in the same neuro type, we’re very good at communicating with each other. There’s a lot of evidence that a lot of conversations are about a rupture in understanding and then a repair, right rupture, repair, rupture repair. So a lot of our time is spent realizing that there was a misunderstanding, and we have to figure out how to convey what we’re talking about. And I think it’s so important to remember that communication is really messy.

Debbie Reber  46:52

Absolutely. I love that. And that’s really the foundation for every sitcom right is misinterpreting. It is a classic Cuban experience. We could spend hours going through this book because it is so rich and detailed. But I would love to know how you hope both clinicians and parents engage with the book? Are you wanting them to read through it and get a deeper understanding of themselves? Are you hoping clinicians use it as part of their process when they’re working with clients? Yes, tell me a little about that.

Donna Henderson  47:24

Well, we should be clear that we went way, way way over our word limit and accidentally wrote two books. So the first book is the one we’ve mostly been talking about. And that truly is to help everybody understand what autism is. So if a parent is wondering if their child is autistic, or if someone’s wondering if they’re autistic, it’s a methodical way for them to go through and think through it in an organized way, and see how much of it resonates with them. And, of course, for clinicians as well to learn what to look for in their clients. The second book is really just for clinicians who diagnose and that’s to give them a way to move through, to take in information and to organize it, to integrate it, and to talk about it in a neurodiversity affirmative way.

Sarah Wayland  48:13

And I’ll just add to that, for me, as a parent. And also as a parenting coach, one of the things that I love about it is it helps you have conversations with your kids. So as we were writing, like, we’d get some quotes from people, and I’d be like, Whoa, is that a thing? So I can go in and talk to my kids. And my kids would say, oh, for me, that’s a thing. And the other one would say why that’s not a thing. And so it just sparked conversation, because now I can understand what’s going on for them in a very different way than I did prior to writing the book. And part of what I love about it is that I think the book shows you the diversity of experience. Just because my older son has trouble with eye contact, my younger son actually has no trouble. He manages eye contact very effectively, when he is not anxious when he’s anxious. He’s not good about it. But that’s just human nature. But we have different experiences. And so if it can open up a conversation about the person’s internal experience, I just think that would be what I would hope for.

Debbie Reber  49:23

Yeah, it’s definitely again, all those examples. It adds so much richness to every single criteria that we might have an idea means one limited thing. And really, it can mean 50 different things. So one last question. This is a subjective process, right? Diagnosing and trying to understand if someone is autistic, at some levels is always going to be a subjective judgment call and is that judgment call really going to be I guess a better judgment call. The more informed the clinician or the parent is, the subjectivity piece is I think hard for people because they’re like, Well, is it or isn’t it? And what’s the intention behind the diagnosis? And do I need this? It’s messy.

Donna Henderson  50:05

It is, indeed, very, very messy. And to add to it, to the messiness, I don’t think everyone who’s autistic needs a diagnosis of autism spectrum disorder, I think there are a lot of autistic people wandering around out there who have built lives that work well for them. And they don’t need to be diagnosed with anything. A diagnosis has a particular meaning and intention, of course, I think, of course, it’s subjective when you compare it to a blood test or an x-ray. But the process that we use that’s outlined in the second book is very, very data based. And it relies on gathering data from a variety of different sources. And to that extent, I don’t think it’s subjective. And it never should come down to a clinician going like, I think this person is autistic, or I don’t think this person’s autistic, it really should rely on the data that is collected

Sarah Wayland  51:00

And I’m going to say something else to that, because my training is a research psychologist, like when you started asking that question, I was like, Ooh, that’s a good one. Because there’s a difference between quantitative data and qualitative data. And we’re collecting both in this the examples and the descriptions of the internal experience, that’s necessarily going to be qualitative. But in the second book, Donna outlines a process where you basically do all these different ways of looking at the person in different contexts, through different assessment measures and so on. And then you say, Okay, do they have repetitive behaviors? Do they have trouble with nonverbal information, whatever, and just collecting information about that, that can be both quantitative and qualitative?

Debbie Reber  51:54

Yeah, as you were responding to that, I remember that one of my child’s assessments very early on the evaluator when it was all done said, Well, I could have gone either way on this one, but I decided to go with this that experienced and feel great. So I love that you are providing such a deep way to explore this, we could go into so many things, I really want to encourage readers to check out your book, it’s really wonderful. If you have an autistic child, you think your child might be autistic, you just want to have a deeper understanding of the different ways that neuro divergence can look and start to get more information of whether or not your child might meet the criteria. Absolutely. Check out the book. Again, it’s called Is this Autism: A Guide for Clinicians and Everyone Else. I’m looking at that autism criteria summary chart right now you guys sent to me and it’s so helpful. Where would you like listeners to learn more about your work and explore the book?

Sarah Wayland  52:51

We have a website, it’s called isthisautism.com. So you can go there, and it links through that website through to each of our individual websites. So you can get information about each of us and also about Jamel White, who was helped us with the cultural considerations in the book and contributed very much to our understanding of some of the assumptions that we make when we’re thinking about what counts is appropriate or typical. We have reviews of the book up there, we have links to where you can order the book. If you want to learn more about Donna, then you can click through on her website. If you want to learn more about me, you can click through on my websites. And that’s the place to go, I think.

Debbie Reber  53:37

Awesome. Well, thank you both so much. I can imagine you’re really happy to be at the finish line of this labor of love. I know what an effort it must have been. And congratulations, thanks for everything that you’re doing in the world. And thanks for this conversation today.

Sarah Wayland  53:53

Well, thanks for having us Debbie.

Donna Henderson  53:54

Thank you.

Debbie Reber  53:58

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