“I suspect my child has autism. Should we pursue a formal diagnosis?”
In this episode of Autism, A New Perspective, host Kat Lee speaks with Dr. Sarah Wayland, an RDI® consultant and co-author of Is This Autism? A Guide for Clinicians and Everyone Else, about the complexities surrounding autism diagnosis and well-being.
With so many resources available to help self-identify as autistic, is a formal diagnosis really necessary?
Benefits of a Diagnosis
Kat and Sarah discuss how a diagnosis can help deepen your understanding of your child or loved one, providing access to critical services like insurance coverage for therapies, specialized educational programs, and state benefits—especially in the U.S.
Challenges of Obtaining a Diagnosis
However, a diagnosis is not without challenges. It can lead to stigma, stereotypes, and limiting assumptions about what your child is capable of achieving.
The process itself can also be difficult. In the post-pandemic landscape, waitlists for qualified practitioners can stretch from six months to two years or more, delaying access to early intervention, which is crucial for long-term success.
Empowering Potential of a Diagnosis
Despite these obstacles, Sarah highlights the empowering potential of a diagnosis. It can guide you in recognizing your child’s strengths and needs while connecting them to a supportive community that celebrates neurodiversity.
Making the Decision
Ultimately, the decision to seek a diagnosis rests with your family, based on your child’s sense of well-being and quality of life. A diagnosis can be a powerful tool in helping your child live the life they want.
Support for Parents of Autistic Children
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, we welcome back Dr. Sarah Whalen. Sarah is an RDI consultant, and the co-author of Is This Autism?, and she shares with us her views on autism, diagnosis, and well-being. Let’s listen in.
Sarah, thank you for joining me. I was so excited to talk to you about this topic.
In your book, which is just amazing, Is This Autism?, you definitely more than touch on our topic, and I think discussing autism, even the term diagnosis, what that means, should someone be interested in that, when should someone be interested, it’s just a matter of wanting to be helpful, and honestly, as Dr. Shealy says so often to us, humble about understanding that every person is an individual, and really, we have to meet every individual where they are living their best life, and for that reason, it’s an important topic, and in fair disclosure, Sarah and I are both parents, and we understand that from a parent’s point of view, which we welcome you, or an adult, or a child, and in between, as we always say, Sarah, we understand every person is different in pursuing their own beautiful life, which is why I think the topic is really important. So, why do you think the word diagnosis is so powerful? By powerful, I mean, lots of things spring to life in your mind when you hear that word.
Dr. Sarah Wayland: Yeah, partly, it’s powerful, because we, our society has given it that power. So, I often have families come to me and say, well, why do I want to get a diagnosis? Why would this matter, right?
I mean, for me, the reason it would matter is it would help you better understand yourself, or your child, or somebody you love, right? So, a diagnosis can help you understand other people, but you could get that without diagnosis, right? You could say, here’s a massive characteristic profile that you fill out and learn all sorts of things about your temperament, and your sensory profile, and your cognitive profile, and your academic skills.
You could do that, right? And then you don’t have to have a diagnosis at all. You would just have a deeper understanding of how all those factors are in play for you.
However, here in the United States, having a diagnosis allows you to access insurance, and services, and educational settings that you might not be able to access without a diagnosis. And so, you know, one of the ironies for me is, I actually do believe we need to deep dive and really understand the individual person sitting in front of us. Like, that is my approach.
And so, the irony of the fact that I have co-authored this book on how to do a diagnostic process has not escaped me, but I do think that having the diagnosis can be a huge support for people. It’s a shorthand to explain, I’m having trouble with this situation because I have this diagnosis. And as long as you’re dealing with somebody who, you know, isn’t going to use that information badly against you, then that can be a powerful tool for communicating with other people.
But you have to be careful about who you share with. So, you know, sometimes people do not use the information for good. And sometimes people have odd stereotyped notions about what that means, right?
So, when you say, I have an autistic child, then people make assumptions about what that means for your child, how your child will behave, how that child will be in the world, what that child is capable of. They make all sorts of assumptions based on that, that may be entirely unfair, right? And so, that’s the danger of a diagnosis.
Kat Lee: It just points to me of how individual a need is. And I think from a parent’s point of view, when their children are coming up two, three, four, whatever the age may be, it’s a question, I get this question, should I get a formal diagnosis? How do you answer that question to parents?
Dr. Sarah Wayland: It depends on their goals, to be honest with you. It really does depend on their goals. One of the challenges can be that getting a diagnosis, especially post-pandemic, has been much harder.
So, there are wait lists of anywhere from six months, if you’re lucky, to two years, which seems more standard for, especially if you want insurance to cover it. Well, waiting two years to get going on helping your kid is a very long time in the life of a child, and it can make a big difference to get started early. So, that’s a caveat I have.
When I recommend somebody go get a diagnosis, I want them to understand that A, finding somebody who can do a good diagnostic process is hard, and B, those delays in getting on the wait list and then actually coming up in the caseload can be a very, very long time. So, that’s a challenge. However, a good diagnostic process can really help you understand your child.
It can really make a difference in just knowing what are their strengths, right? What’s your kid really good at? Where do they shine?
And then also, what’s hard for them? What situations are going to really cause them to struggle, and what can you do to help them? So, as a guidance for how to help your child be their best self, or be the self they want to be, I think.
So, sometimes when I say be their best self, people hear that as, oh, well, they have to go to Harvard or something. I don’t know. And that’s not what I mean.
I mean the child being able to be somebody who enjoys the life they’ve built for themselves. So, there’s that. However, as I mentioned earlier, accessing things like insurance, paying for services, that’s a real good reason to get a diagnosis.
Education, being able to access programming that will actually help your child in a way that is effective for that kid. Those are both really powerful reasons. Accessing state benefits.
So, if you are getting Medicaid or something like that, and you have access to certain waivers, this is all here in the US. That doesn’t apply to people in other countries, but there are other programs in other countries that depend on diagnosis.
Kat Lee: I feel like there’s a lot of confusion and misunderstanding surrounding. How do you feel about it?
Dr. Sarah Wayland: Oh, yeah. And, you know, some of that is just, as with any difference, I’ll just take left-handedness as an example. Okay.
So, when my dad, my dad is left-handed. And when my dad was growing up, being left-handed was bad. It was categorically bad, and you were not allowed to be left-handed.
And so, his teachers would tie his left hand behind his back and force him to write with his right hand, which he could not do. It was not possible for him to do it. And his mom, thank heaven for his mom, marched into the school and she said, this is the most ridiculous thing I’ve ever heard.
He has beautiful handwriting if you let him write with his left hand, and you can’t even read what he’s doing with his right hand. Why are you doing this? And so, you know, his teachers let him write with his left hand, but it was, you know, the word sinister, for example, is a word that literally means left-handed.
And so, like, it’s that term. People really thought left-handed people were somehow bad or evil, right? And over time, like now, for me to say that, you’re probably thinking, like, I mean, some of us grew up with that.
But a lot of people hear that and they’re like, what? Like, they don’t even, they wouldn’t even understand what I’m talking about. Like, it’s just a difference.
Like, it’s just shocking. Yeah, there’s some people are right-handed. Some people are left-handed.
Some people are ambidextrous. It’s just a difference, right? But our thinking about that has really evolved over time.
And I think our thinking about autism has also evolved over time. And so sometimes the thinking in popular culture, you know, lags behind our understanding in clinical settings, for sure. Although there’s actually a kind of a fun interaction I see going on now where autistic people are now saying to clinicians, hey, you need to pay attention to our experiences and what we are telling you autism means, which has enriched our understanding of what autism is.
But the shift has gone from being somebody who, you know, can’t function and, you know, I don’t know, I’m just thinking, you know, in our book, we have a thing about the history of how autism is understood in the general population. And when I was growing up, Rain Man was a very popular movie. And the main character, Raymond Babbitt, was an autistic man.
And he had a very particular profile, which I had never seen before in my life. I had no idea what that was. So it was really an eye-opener for me to see that.
And then I went to college. And I remember taking a medical anthropology class. And we had a video one day about people using ABA to help autistic kids learn to speak.
And I thought, oh, well, that’s interesting. That’s different than this, you know, Rain Man thing. And then we had the Big Bang Theory and Sheldon.
And then our conception of autism, you know, changed based on that. And, you know, now we’re realizing, well, it’s not just the Sheldons of the world. Like there are also, you know, other people that are autistic that, you know, maybe are not white males who have whatever profile they have.
Because all the people I mentioned now were all white men that were depicted up to a certain point. And so the fact that women can be autistic, for example, was not as well known, even though Temple Grandin was certainly out there being female and autistic. So I don’t know.
Anyway, that was a very long answer. Sorry.
Kat Lee: I think it’s important, though, because if confusion is in play, then that can affect whether a person seeks out help and understanding or either for themselves or for their child, because so much confusion surrounds something. And unfortunately, confusion is not often positive in the sense of how it makes us feel about things. So I think it is important to think about that history and what that’s saying to us now.
And I always say things just get in people’s brains.
Dr. Sarah Wayland: Yeah.
Kat Lee: You know, they see something, as you mentioned, right, man, they see something and that’s in their brain. Like, wow, that was really rough. And scary and sweet with his brother.
But, you know, it was still rough and scary, you know, so that’s what’s going on when they hear that word. And that can prevent someone who really needs to seek out just help.
Dr. Sarah Wayland: Absolutely.
Kat Lee: From going and getting that.
Dr. Sarah Wayland: Absolutely. I mean, I had a client who I brought up the question of whether their daughter might be autistic. And they were like, well, she’s not, you know, this way.
And they had these ideas of what this way was. And I kept saying, no, that’s, you know, that’s a I call them flavors of autism. So that’s a flavor of autism.
Your daughter has a very different profile. And so her flavor may be different if she’s autistic. She is, it turns out.
But they could not wrap their head around the idea that she might be, you know, some version of autistic that did not comport with their preconceived notions.
Kat Lee: So with all of your experience, if a adult, a young adult, teen, young teen were having these feelings of confusion and wondering, and maybe other people were suggesting to them, A, B or C might be going on with you. What would you tell that young person? Because that’s that to me is such an important question in these times.
There’s a lot of sources for information. I know I’m not telling anybody anything new to say they’re not all reliable. Right.
Dr. Sarah Wayland: So we know that may not be the best place. We know.
Kat Lee: So what would you say? And what have you said?
Dr. Sarah Wayland: It’s a great question. And again, I go back to what are your goals? OK, so so for me, the goal of getting a diagnosis is better understanding.
Right. So as a parent, it might be better understanding of your child as a as an autistic person. It might be a better understanding of yourself.
As a teacher, it might be a better understanding of your students and how what kind of help they need in your classroom. So what I do find is for people who have not gotten a diagnosis early. So the flavor of autism where they are camouflaging or masking, then for those folks, very often they may not know they’re autistic.
But the the. Autistic parts of their profile, because, by the way, autism is just one part of a very complex person with lots of, you know, lots of different features, right? Autism is just one piece of that.
And the the but understanding I’ll just use as an example, one of the diagnostic criteria is sensory differences. OK, and so if you have sensory differences and, you know, your friends clearly cannot hear the electricity in the walls the way you can hear it or they do not taste things like I have synesthesia and so I taste shapes. And so that’s very confusing to other people.
But it’s a sensory difference I have. And but I understand like once I found out there was a name for that, it was so exciting because before that I was just a weirdo to my friends. My friends were like, what is wrong with you?
You don’t taste shapes. They used to make fun of me. But and then I was like, look, it’s a real thing like this actually happens to real people.
And and so that actually, for me, was really validating to understand that this experience I was having was not just me, although I might add that even if it is just you, it’s still a valid experience. But but it wasn’t just me. There were a whole bunch of people who actually share this difference in how their brains are wired.
And and so that also gives you a sense of community, which is a pretty big deal. And also perhaps an understanding of what’s challenging for you. So if sensory if you’re sensitive to auditory stuff, understanding that can help you understand why maybe you don’t enjoy going to large festivals.
So you’re not being a terrible person when your friends say, hey, let’s go to a big rock concert. And you’re like, you can go, you know, I’ll join you, you know, maybe afterwards or something, but I don’t need to go to the concert. You’re not being a terrible person.
You’re just respecting your sensory profile. And so I think having that understanding of what might be at play for you is incredibly helpful, incredibly helpful. And so going through a diagnostic process to understand what is challenging for you, what is hard for you, what is really easy for you, what’s really good for you.
I actually love my synesthesia. It gives me a whole different way of of thinking about the world and and experiencing the world that other people don’t get to have. I love it.
But it so but I understand it now. And so, you know, when people say you don’t taste shapes, I’m like, well, actually, yes, I do. So so I think that deeper understanding of what’s going on for you can then help you explain to other people what’s going on for you in a through a lens that’s not judgmental.
It’s it just is. This is a difference you have.
Kat Lee: I was thinking what you were saying and really enjoy and appreciate that you share your personal experiences. And I started thinking about what you said about best life. And I think the emphasis needs to be put on that person’s best life.
Exactly. Not not the best life that so-and-so thinks would be your best life. Exactly.
Which is far too common in my period. Yes. But that person, what they when when there are obstacles and you don’t understand what they are.
Dr. Sarah Wayland: Yeah.
Kat Lee: And you just keep having that question mark. I think that’s the moment that needs to be really thought about no matter how old.
Dr. Sarah Wayland: This is such an important point you’re raising. It’s so important. If you are having a hard time.
Living your best, your best life, right? If things are getting in the way of you doing what you want to do with your life. And that is creating tension for you.
That is a good moment to seek out a better understanding of what might be going on for you. That is that is a time when diagnosis really can be life altering, right? So I think that, you know, people do not say, oh, I’m going to spend three days in a clinic doing really annoying tests with somebody and paying, you know, two to six thousand dollars because they think their life is going really well.
Right. So we don’t we don’t invest our resources in getting information that doesn’t help us feel better about things. Right.
So if you think your life’s going great and you don’t really feel a need to understand why is this hard for me or what’s going on with this here? Why is this constantly a challenge in my world? If you don’t have that need, you might not need to get a diagnosis.
Right. You could still understand yourself. Oh, you know, for me, it’s actually really hard to go to a loud rock concert.
So I’m not going to do that. You don’t need a diagnosis for that. That’s just an understanding of your own sensory profile.
Right.
Kat Lee: Oh, I want to give a shout out to understanding. Yeah, because I think that was so key in what you were saying. It the reason would be to gain an understanding and therefore access to whatever help assistance or just knowledge you may need to have.
Dr. Sarah Wayland: Yeah.
Kat Lee: Or your best life. Right. That’s why it’s important if it is.
And like you said, if it’s all good, then it’s just your your own understanding is what is good and you’re good, then that’s a great thing.
Dr. Sarah Wayland: You know, I you had said something else, and I do want to emphasize this point. And you’re just bringing it up again, which is your best life. So I’m going to use as an example, my older son, who is a very introverted person, and he does need people in his life, but he doesn’t need a lot of people in his life.
He you know, and so he we’re very close as a family and we enjoy spending time together. And but he does not have a need to have a very large group of friends. He just doesn’t.
And for years, very well-meaning clinicians and teachers and friends would tell us, oh, he needs to have more friends. You need to get him more involved with social things. And every time we tried, it ended up being really awful.
I mean, really awful for him. And we would stop doing it. And what I’ve come to realize he’s now in his mid 20s is that he loves his life.
He loves his life with his very small group in a larger community of people who do know who he is. But he doesn’t need a big group of friends. He just needs one or two really key people.
Right. And that’s his best life. My younger son needs friends.
He needs a lot of friends to feel whole in the world. And so we’re going to make it easier for him to have those friends and people he can connect with. So what looks like my older son’s best life in terms of friendships and number of friends is going to be very different than what looks like my younger son’s best life in terms of friendships and number of friends.
Right. And I think it’s so important that we keep an eye on what is working for that person and what they need. Right.
And to really be careful about imposing our own value system on them.
Kat Lee: Before we go, I’m going to give my last shout out, which is to RDI. And I think we’ve really talked a lot about why, without saying it directly, we’re both so passionate because that program in RDI is so individual based. It’s so based on our emphasis of your best life as an individual.
Dr. Sarah Wayland: Yes. Quality of life. Right.
It’s all about quality of life and well-being. Like Dr. Goodstein has always been so clear. It’s about that person’s sense of well-being.
That is the outcome we are aiming for. Quality of life and well-being.
Kat Lee: 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
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