Autistic people often face barriers in accessing appropriate care that non-autistic people do not. Finding clinicians who are equipped and willing to work with autistic children can be especially challenging.
So, how can clinicians become better equipped, and how can you ensure your child receives the care they need?
Challenges in Accessing Care for Autistic Individuals
As a parent, advocate, and RDI® Program Certified Consultant, Dr. Sarah Wayland knows this struggle firsthand. She has navigated the healthcare system with her own autistic child and is deeply committed to addressing the social and communication challenges that autistic individuals, their families, and care providers face. Dr. Wayland emphasizes the importance of clinicians adopting a curious and empathetic approach, seeking to understand the internal reasons for behaviors rather than making judgments based on external appearances.
A Comprehensive Guide to Understanding Autism
In her book Is This Autism? A Guide for Clinicians and Everyone Else, co-authored with Donna Henderson and Jamell White, Dr. Wayland provides a thorough exploration of the diagnostic criteria and characteristics of autism. This book is an essential resource for mental health providers, clinicians, and parents seeking to better understand autism.
Find Support Through RDI® Consultants
If you’re a parent or caregiver for an autistic child who wants to advocate better for your child, consider working with an RDI® Program Certified Consultant like Dr. Sarah Wayland. RDI® consultants offer vital third-party perspectives and autism support on family dynamics, program progress and potential obstacles to growth. They also serve as mentors and coaches that help parents maintain focus and give guidance for next steps.
Connect with an RDI® Program Certified Consultant today. Find your consultant here.
Autism: A New Perspective is available on iTunes!
Full Transcript
Kat Lee: Welcome back to Autism: A New Perspective, the podcast show where we help you understand what is going on in the mind of your child, and we encourage you that growth for your child is possible. I’m Kat Lee, and in this week’s podcast, I sat down with Dr. Sarah Wayland, RDI program, certified consultant, and the co-author of the book, “Is This Autism”. Let’s Listen in.
KL: I can tell how hard you worked to care about everybody reading this book. And I just point to this page where you talk about the diagnostic criteria and the words used, and we know that some of these words are even hurtful to people that are used, but you acknowledge that right from the beginning, Sarah. How did you know that was so important?
Sarah Wayland: Well, we partly knew because autistic people were telling us, right? And I mean, the medical model, very often there comes with it an idea that there is a “normal” way to be, right? And I think something that I have certainly learned over the years is there’s no such thing as normal, right? And I actually mean that in both a literal and a figurative sense. So I was listening to a podcast, I love this podcast, called 99% Invisible, and they were talking about the idea of the average human being. So the average height of an American woman, for example, is five foot five inches, right? And they were talking about the fact that they were designing cockpits of airplanes for the average, at that time, male who would be flying an airplane.
SW: And so they came up with the averages, and then years later, somebody said, you know what, let’s see if there is somebody who actually meets all those average dimensions. Is there anybody who actually is average height, average weight, average eye color? I don’t know what else. And it turned out nobody. There was nobody that met all those criteria. We all deviate from one another and we’re all different from one another. And so one of the things that’s so hard about the DSM is that it talks about appropriate or inappropriate or correct or impaired when really it’s the difference. And so one of the things we really wanted to emphasize, and I love that you highlighted this passage here, Kat, because talking about appropriate behavior versus this is the way people, in this situation, expect you to behave or something like that.
SW: So I can remember years ago, my younger son was in a therapeutic school for autistic kids, and they would talk about, instead of talking about appropriate and inappropriate, the kids found that offensive, but what they really could relate to was expected and unexpected, right? And so if people are expecting you to stand on your head in yoga class, that doesn’t mean they’re expecting you to stand on your head when you’re in the grocery store, right? That would be unexpected behavior in those different contexts. And so one of the things you wanna think about is, what does the context afford? And when you’re talking to people, different people, then you’re gonna talk in different ways. So yeah, this idea of impaired, incorrect, inferior, abnormal, inappropriate, whatever, all that stuff, that is pejorative language that makes autistic people feel bad about themselves. And really what we’re trying to do here is to describe a different way of being.
KL: Part of the book where you talked about different countries having social rules and that they can be complete opposite. I believe one you did, which was very interesting to me, was cooking a meal for a neighbor or a family member was just an expected, gracious thing you would do and you wouldn’t say, thank you for that, but in another country, you better say thank you for that.
SW: Right?
KL: Just the understanding that there are differences and that the differences are a part of our life.
SW: Right, right. And yeah, one of the things we talk about in one of the chapters, I think it’s in reciprocity, the chapter on reciprocity, we talk about this concept that has to do with how different neuro-types communicate with each other. And one of the things we talk about is something which you’re alluding to here, is cross-cultural communication. And that’s how I think of a lot of the way I communicate, then my kids may communicate in a more direct way, but for me, I would talk in a less direct way. And to me, that feels nicer, to them it feels unclear. And so it’s just we all have different needs in our communication and I think we’re all trying to adapt to each other.
KL: You did such a beautiful job of talking about why the book and you talked about how many clinicians have, as you can see here another page from the book, confided that they are confused and intimidated by autism. And then you seem to have realized that it’s not just certain health professionals, like many health professionals and lots of people in the healthcare system, and then other people. So you wrote the book for everybody. It may seem self-evident for some of us who work in the field, but when I tell people that, they just don’t understand why would there be confusion, why would there be intimidation. Why don’t you talk about that for a moment?
SW: Well, that was something I certainly encountered when I was trying to get help for my kids when they were little. I mean, I remember my younger son has a pretty severe anxiety, generalized anxiety disorder and so we knew we needed to get him help for the anxiety and I kept looking for a therapist. I knew cognitive behavior therapy is what everybody said was the right therapy and I found some really great cognitive behavior therapists in… I lived outside of Washington DC and I would ask them, I’d say, hey, I have a kid. He’s got really severe anxiety, he needs help. And the minute they found out he was autistic, they’re like, “Oh, I don’t do autism, I don’t do autism.” I was like, why not? Like he’s a human being and he’s struggling with anxiety. He needs help.
SW: It took me four years to find somebody who was willing to work with an anxious autistic kid and that was very frustrating for me. And I think lots of parents have had that experience and I mean, I’ve had other experiences too. My older son had an infection in his esophagus and the first time he went to the hospital, ’cause he couldn’t keep anything down, and he was losing weight like crazy and getting dehydrated and everything. And we go to the hospital and they did a whole bunch of tests on, they could not figure out what was going on, and they said, well, it must be that he’s autistic and he needs to work with a psychiatrist on this GI issue. And I’ll never forget that. I called his pediatrician, his regular pediatrician, and said, okay, this is what they’re saying at the hospital and he went crazy.
SW: He was like, that is not a reasonable exit. They’re just giving up on him. They just wanted to ascribe this physical problem, which turned out to be a yeast infection in his esophagus, which was absolutely treatable, but nobody would look past the autism and think maybe there’s a physiological thing going on here. That was terrifying. I mean, he ended up losing 25 pounds that he didn’t have to lose in three weeks because they weren’t taking him seriously and that is not something that anyone should have to deal with. And I can express myself well to a doctor. I could advocate for my children, but I felt like they weren’t taking his concerns seriously. So in this thing here, we talk about autistic individuals do not have the same access to care as non-autistic individuals.
SW: That’s absolutely true. My experience is not unusual. That happens to parents all the time and it happens to autistic adults all the time. They aren’t taken seriously when they say something. So one example is some autistic people have sort of a calm, flat way of presenting themselves and so the doctor will say, on a scale of one to 10, what is your pain like? And they’ll say, I think I’m at a 10, right? But they say it like that. I’m at a 10. And the doctor’s like, if you were at a 10, you’d be passed out on the floor, so clearly you’re not at a 10 therefore I can’t trust your rating. Except that then when they actually find out what was going on, they’re like, how come you weren’t collapsed on the floor?
SW: Like that’s crazy that you were able to just sit here and say, I was at a 10 and the person’s like, I told you I was at a 10 and you weren’t listening to me. And that’s just another example of people just not taking the autistic people seriously. And I mean, that experience over and over and over again, we hear that story. So it just makes it really hard. And one more thing to that point, and I know I’m going on and on, but the other thing that also happened to us with both of our children actually is that we knew something was up developmentally, and we went to a neuropsychologist to get some clarity on what was going on. The first person we took my older son to did not even consider autism as a diagnosis.
SW: Said ADHD, language delay, sensory issues did not identify autism as even a possibility. We didn’t even know it was in the mix. Younger son came along and he was a little bit more typically autistic and so the… But even with that, even with that, I was calling neuropsychologists to ask them what was going on. He was tested by an amazing neuropsychologist actually, but we first had him tested under the age of five and it was very difficult for them to say what was going on with him. But I found out at that point that if you call around and say, I suspect autism. I don’t know.
SW: At that point, three quarters of the people I called would say, oh, well, I don’t diagnose autism. That’s not a thing I do. I’ll do dyslexia, I’ll do ADHD, I’ll do dysgraphia, whatever, but I don’t do autism, and that is also not an unusual situation. But I didn’t know that as a parent that I needed to ask that question. Like most parents aren’t gonna know that. Of course they’re not and so it’s not okay that a huge percentage of neuropsychologists feel unable to diagnose autism. That’s not okay because that doesn’t help kids get the help they need, adults get the help they need, parents get the help they need. Like it just leaves everybody in the dark for even longer.
KL: Yeah. Well, it’s a beautiful explanation of why this book is for everybody and why it’s so important. And one of the things I wanted to do in our time was spotlight that you take in the book each of these points, one, two, three, and more I’m gonna show in a moment, and you break them down into sections in your book and really explain what the terms mean and then what they really mean in terms of the children and the adults that we see. It’s really beautifully done. So one of the points I wanted to make was if you haven’t read it yet, really sit down to read it for a period of time to learn it. It is really important I think whether you’re a parent like I am or a professional like I also am, or you just need to know for somebody in your life, it is extremely thorough. Sarah, you explain more than just a little bit. A lot of these terms that you talk about, you can find something on them, but you go to a lot of effort here.
SW: Yeah, and I think we relied on our clinical experience. We also relied on the research, what the research says about these things and then we also talked to autistic people to get their perspective on what it feels like for them to be navigating whatever this difference is that they’re navigating. And it’s funny, I keep thinking about this. When I was… First when I was an undergraduate, I was majoring in psychology. I wanted to be a psychologist and I always loved the case studies the best. Like I love the case studies ’cause I could read about somebody and learn about this different experience of the world, but the way research was going at that time, you just didn’t really do case studies. You did big group studies, you talked about group behavior and so on and I hadn’t really realized it until maybe, I don’t know, a couple of weeks ago. I was like, oh, this book was like me trying to take the research, which is important and does highlight things that are true for a big group of people. But it’s also important to get at the individual experience as well and I hadn’t really thought about it, but I think I was returning to my roots.
KL: When you start… I was gonna say you certainly did return to your roots, but I don’t know your roots that well, but there’s a lot of information and I think it’s not… I love it because it’s not just, here’s what it is, but you gave examples, real life stories. You really… One of the big thrusts of this book is you really talked to people experiencing.
SW: Yeah.
KL: And that’s key. It’s key in the book.
SW: Right. And just understanding what their experience is with something. So for example, here, these diagnostic criteria, like looking at repetitive or idiosyncratic behavior, one of the things we realized as we were writing this up is that there are some repetitive behaviors that actually feel very comforting to the person. There are other repetitive behaviors that are actually really irritating to the person, and they would like to be able to stop them and they can’t. They both get classified under repetitive behaviors, but the source and the purpose of them can be different. And that’s, I think, one of the things that the diagnostic criteria sort of step away from that question. But I think if you’re gonna really help somebody, you need to understand the underlying reason behind that externally presented behavior. And I actually think that gets at something else I did wanna touch on tonight, which is just this thing that the DSM really focuses on what we can observe from the outside.
SW: It’s observable behavior and one of the things we really wanted to get at in this book is not what your observable behavior is, because so many people have learned, oh, if I… I don’t know. I’ll just… Here’s a repetitive behavior that some people talked about is they do a thing with their teeth where they kind of tap their teeth and they do that instead of hitting their leg or doing some repetitive motor thing that’s obvious from the outside. The tooth tapping, they can do and nobody knows it’s going on. And so if you were looking from the outside, you’d say, oh, no repetitive behaviors, but when you ask the person, do you have any movements or sounds or whatever that you do that you feel like are repetitive? And that tooth tapping one came out and they said the reason they did it is because nobody would yell at them if they were tapping their teeth as opposed to if they were flapping their hands. They’d say quiet hands, right? And so getting at the internal experience was really important because they learned that whatever they were doing that was repetitive was somehow not making other people feel comfortable. So they wanted to do something different.
KL: When you put so much passion into a book like this, and I know I keep holding it, but as you know, I’m very excited about it, so what do you want most from this book for others? What is your biggest passion?
SW: Oh, I just want people to get curious and to know that you can’t tell from the outside what’s going on on the inside and to really try to understand what the other person is dealing with and what they are navigating. If I could just make one person say, huh, maybe I don’t know what’s going on based on external behavior, maybe I do need to get curious about what is going on underneath that. If that happened, I would be very happy.
KL: But it’s a bold book. I made this slide just because I loved what you said so much. We need to do better.
SW: Yeah, and you know Kat, the other thing is that I just read a book, a very interesting book called, “When We Cease to Understand”, which is about… It’s about some various scientific discoveries that shaped the 20th century. And one of the points of it is that at some point, we learn so much about something that we learn that we can’t understand everything that there is to know about a topic, and that there are things that are still a mystery, and we have to keep looking to try to understand them.
KL: And thanks for joining us for Autism: A New Perspective, the podcast show where we help you understand what is going on in the mind of your child, and we encourage you that growth for your child is possible. I’m Kat Lee. See you next time.
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