Autism on the Rise: More Diagnoses, More Awareness or Both?

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Autism and neurodivergence are being redefined by a new generation as more young people use social media to discuss diagnoses. What does it mean for awareness, proper diagnosis and identity?

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Macie Jepson
We’re talking about something today that brings up both cultural and psychological questions. And frankly, today it’s not a political question. But this topic has been at the epicenter of fierce political debates as well. Our topic is misunderstood. It’s hard to understand and dare I say that it’s glorified, at least recently. Which is exactly why we’re talking about this today. Autism spectrum disorder.

Matt Eaves
Yeah. So, you’ve brought this up to me in a few of our conversations over the past couple of weeks, because you’ve noticed more people, mainly of a certain age, claiming to be on the spectrum. I’ve also noticed this in the social media space because of my role at work. I’m in that space a lot and overseeing social media, and I’ve seen a lot of reels and posts about autism. I’m Matt Eaves.

Macie Jepson
And I’m Macie Jepson. And this is The Science of Health. You know that I have noticed it mainly on social media, but also in social settings. People are openly sharing their experience with autism and this is what bothers me. It seems like they’re making light of it. So, I asked you the other day, is “a touch of the autism” a real thing? Because that’s what I’m hearing. And what does that mean? Are people getting diagnosed or are they diagnosing themselves because it’s suddenly cool to be on the spectrum, but the narrative is beginning to actually feel trite.

Matt Eaves
Joining us today to help us better understand autism spectrum disorder is Dr. Max Wiznitzer, pediatric neurologist at University Hospitals Rainbow Babies and Children’s Hospital in Cleveland, Ohio. All right. First, let’s start with what is autism spectrum disorder. How do you define it and what are the symptoms and characteristics of it?

Max Wiznitzer, MD
Autism spectrum disorder has been around for decades and decades, but it was really recognized more formally in the 1940s, by a physician in America and also by physicians in Europe at around the same time who published papers on this and gave it the label of autism. And that has colored follow through. Initially, what we were describing was a group of individuals who had significant impairments in socialization, but it was a specific problem with socialization, an absence of social awareness. They were basically aloof, removed, almost as if not interested in interacting with people and also with social communication. They didn’t use the typical things that we would use, pointing, gesturing, expressions, understanding expressions by other people, reading body language.

And in addition to these social differences that were present, they also had restricted interest, repetitive behaviors. That means that they would have actions such as finger flicking, hand slapping, watching fans, talking about certain topics such as biology issues. In the present time it would be more things like Star Wars, Pokemon Titanic and literally knowing all the facts about them. That was initially what we would have as time went on, and we recognized that not everyone was severely affected. And that is not unusual. When we first describe a disorder, we normally identify the most severe form of it. And then as time goes on, we start recognizing less severe forms.

But no matter whether they were less severe or more severe, all of them were having a significant negative impact on the ability of that individual to function on a day-to-day basis. That was a key thing that had to be there. It was also recognized, besides having those features, that these individuals presented at an early age. In other words, it didn’t start at age 31. It started, basically by age three. Now people talk about it as showing some symptoms, but becoming much more manifest by middle childhood typically around age eight or so. And you can’t find an alternative explanation of why those behaviors are there. As time has gone on, our definition has broadened, and that has contributed to a better understanding of the population and also has increased the number of individuals that we’ve identified.

So it’s now broadened where the social impairment doesn’t have to be as severe as we initially thought. But you really had problems either starting or maintaining social interactions with people because you just didn’t know what to do. It’s not that you knew what to do, but then stopped early, as the ADHD population does, because they got bored with the social interaction and went off to do something else. People didn’t really have any good insight about what to do at the beginning. They didn’t read again. They had difficulties reading social cues and understanding the concept of joint attention. I can do a task with somebody else, have a conversation, play ball, point out the circus that’s walking by the door.

And the criteria that we have especially as the diagnostic criteria have evolved, is that people have recognized that it doesn’t have to be as severe. You can have other kinds of behaviors. And that kind of moves in part depending on your level of intellectual functioning. So the more severely intellectually disabled individuals would be ones that have mannerisms and movements and actions, while the ones that with normal intelligence would basically have a focus on certain topics, what I call major fascinations, they enjoy them. They take pleasure from them, and they know everything about them in that regard. So that what we have is starting from very, very discrete and very, very detailed and then expanding over time. And if I may, the question is, why has it expanded over time? What’s going on?

Why are we seeing more numbers at the present time compared to the past? After all, when I first started in this area, maybe 1 in 1000 individuals might have been labeled as being on the autism spectrum. Nowadays, we have about 1 in 30 that are being labeled as being on the autism spectrum, and in part it’s based on multiple factors. One factor is better recognition. Decades ago, people really did not understand autism. They didn’t know what it was, and they basically ascribed it to other reasons. Adults with autism would end up in mental health facilities, psychiatric units, because people didn’t understand what their behaviors were like. Nowadays that that should not happen, it occasionally does, but it should not happen.

Number two is better education about this. This was not taught in school when I went to school. Now people at least get some information about it. So they recognize that what’s there. Number three is a clear and better understanding of the diagnostic criteria. And there’s what the teachers are recognizing. It’s the sort of socialization people know more about it. Number four is better access to resources in terms of making a diagnosis. When I first came to Cleveland about 40 years ago, there were very few individuals here who really had a good working knowledge of autism and how to manage it. Now we’re blessed by having multiple individuals, many more resources, and it’s much easier to get a diagnosis to be made now that studies have been done that showed that the diagnostic rate was directly related to how close you were to an autism diagnosis center. The further away you lived, the lower the diagnostic rate.

That number is less likely to occur, especially nowadays when we can do telemedicine evaluations that are present. So when we look at these kinds of factors that are that are occurring, we can understand why we’re seeing more and more of it. However, one thing we do know that is not a reason why the numbers are expanding is it’s not due to environmental factors such as vaccinations. We know that autism, especially the classic autism as I call it, is it has a heavy genetic basis to it. And the studies that have been done have shown the genetic basis may differ between individuals who are diagnosed at an early age and diagnosed at a somewhat older age. By the way, older age does not mean 50 years old. I’m talking about childhood, maybe early teens type of an idea in terms of diagnosing them.

But even then we understand that there’s clearly a clear genetics to it.

Macie Jepson
What does it take to get diagnosed? Is this something that a school can do? Is do you need a medical diagnosis? I imagine, you know, a lot of the the red flags are perceived. Red flags happen within a school setting.

Max Wiznitzer, MD
Well, when we look at red flags and I think you raise a good point regarding the red flags, is children who are not developing the way they respect them to be. Autism should be considered as one of the possible reasons why it’s there. Unfortunately, nowadays, many times it’s first on the list without anyone going further down the list to say this is something else that that might better explain it. But the diagnosis can be made by medical personnel who have training in the area or can be made by psychologists. Technically speaking, those are the two major groups that they want to use. The terminology are allowed with quotation marks, are allowed to make the diagnosis, but most important, it’s a clinical diagnosis. It’s not a blood test, it’s not an x ray, nothing like that at all.

It’s basically looking at the history and at the clinical picture and at the individual you have in front of you in terms of assessing them and seeing do they meet the criteria. That’s a unique look to the population in terms of the difference in their social behavior and and in the restricted interest and in the repetitive behaviors that are there? So therefore we should be able to make the diagnosis clinically many times in order to confirm the diagnosis. You may do some additional evaluations. People talk about doing things such an autism diagnostic observation schedule, a play-based assessment. There’s other play-based assessments such as the STAT, there are checklists that can be used. There is Childhood Autism Rating Scale (CARS). Things of that nature that people use in order to confirm a diagnosis.

But ultimately, when you see someone who truly is a specialist and who understands the diagnosis, they should be able to make it without necessarily the use of all these tools. These tools are used many times in order to gain services, but not necessarily to make the diagnosis in and of itself.

Matt Eaves
Doctor, can you talk a little bit about what exactly the spectrum is like, what are the bounds of it? And even before you came in, we were having a conversation. Is everyone on the spectrum because, going back to some of the things you said, simply having an intense focus on a subject or engaging in or being very routine, driven or engaging in repetitive behavior, in fact, in some adult settings, those could be very desirable traits, right? You show up for work, you’re focused on what’s going on. So simply having those traits does not necessarily mean autism. Is it a combination of things? And how do you figure out where people are on the spectrum?

Max Wiznitzer, MD
Well, let me give you an example. If I told you something has four legs and a tail, can you make the diagnosis? Can you tell me what it is? No. If I said four legs, a tail here and goes woof! Then you’ve got sufficient criteria to say it’s a dog. The same thing with an autism spectrum disorder. You can’t pick out the individual little pieces and say that they must have an autism spectrum disorder. Because these behaviors can occur in individuals who otherwise are functioning perfectly fine, or who have other diagnoses that are present. It has to be a combination. The significant impairment is usually the older criteria qualitative impairment, which means it’s a difference in how you function in socialization and social communication.

Socialization and social communication is not do you talk or not talk, but how you use your language in order to communicate, whether it’s verbal or nonverbal? And in addition to that, you have the restricted interests and repetitive behaviors, whether it is certain mannerisms, as I mentioned before, in terms of actions or repeatedly playing with a light switch whick little kids do to some degree, but usually not for a half an hour straight. There’s a difference there. It’s a hypersensitivity or hypersensitivity stimuli. The hypersensitivity is not really that specific and or sensitive, in my experience, to making the diagnosis. Hypersensitivity to stimuli like pain, it occurs much more often in the autism population and their restricted interests.

But there’s a lot of people who have hobbies. There’s a lot of people out there who may be interested in Star Wars and I’m going to go see the the upcoming Mandalorian movie. That doesn’t make them autistic just because they know that. But if you fulfill all the criteria, then yes. But it’s not only fulfilling the criteria because you can be a little bit socially inept. But the question is, does that social ineptness significantly interfere with your functioning on a day-to-day basis? The problem is that you can’t just say you’ve got a touch of autism. That’s like saying you’ve got a touch of pregnancy, which I think would be an insult to any woman who has ever been pregnant. Instead it has to be at the level sufficient that that interferes with your ability to function in the appropriate way.

Socialization, social communication, restricted interests and repetitive behaviors. In those combinations, you’ve got to have some from column A and some from column B, not just B itself.

Macie Jepson
And yet that’s what we’re hearing these days is “a touch of the ‘tism.” And I thought, is that a thing because there is a spectrum from extreme to high functioning?

Max Wiznitzer, MD
But that isn’t a spectrum there. Actually, when you look at the core criteria, as I mentioned it, intelligence is not a core criterion. Whether you talk or don’t talk is not a core criterion. It’s how you use the communication skills you have. So I can see autism in the hearing-impaired population. And there’s most individuals with hearing impairment who don’t have autism. It’s really the spectrum is not defined by your IQ. It’s not defined by the comorbid conditions that you have, such as language or an anxiety disorder, a mood disorder or ADHD or epilepsy or anything else like that. It’s basically the socialization is restricted. It’s repetitive behaviors, criteria that are present that are interfering with your functioning in a significant manner.

It has to be significant, but you can have a modest interference. So for instance we can look at the socialization, where you socialize but you’re very awkward and very stressed and focus on one topic that you always talk about. And that’s it to individuals who don’t socialize at all and really withdrawn from the world in that regard. That’s the kind of spectrum we’re talking about. But when it comes to a touch, that really raises the point of, is there such a thing as an autistic trait and the term autistic trait came from basically looking at a checklist of features that are found in kids and adults with autism, but also found in individuals who don’t have autism. So they really shouldn’t be called autistic traits. We can call them traits.

We can say that they’re there in general because, for instance, let’s use an example: hypersensitivity to loud sounds. We see we can see that in individuals with autism spectrum disorder. We see it quite often individuals who have no autism in general but have instead an anxiety disorder. So, you can’t really state that that in and of itself is a touch of autism. You’ve got to meet all the criteria and they have to interfere with your functioning.

Macie Jepson
Could this be one of the situations where artificial intelligence isn’t serving as well? If you were to Google traits of autism, then you’re going to find anxiety. You’re going to find overstimulation. So how are people going there and self-diagnosing?

Max Wiznitzer, MD
The answer is yes. Either diagnosing it in their children or diagnosing themselves as adults when they look up and say, here’s all the things that are bothering me, what could it possibly be? And they come across autism spectrum disorder as the label for the children, which are the majority of the population that I see when they come in. And we have a more in-depth discussion and go into some of the details, we can sometimes sort out, is it autism or is it not? Because those behaviors in and of themselves really are not. I cannot make a diagnosis and almost always it can be explained by an alternative reason. And that’s the key thing when we’re looking at.

Let me give you an example. When we’re looking at disorders that affect socialization, there’s multiple reasons why an individual may not socialize well - autism is one of them. But if I have a person with social anxiety who gets very stressed by talking to other people, they’re not going to interact. If I’ve got a person with ADHD, they’re going to be socially immature, they’re going to act younger than their calendar expects them to act. If I’ve got individuals with intellectual disability, they’re going to act at their mental age, not their calendar age. If I’ve got individuals with obsessive compulsive behaviors, their OCD may be so impairing that it negatively impacts how they can interact with other people. So there’s that and this is just a small list.

What do I do about my children who have significant language problems? Do they for instance, they have problems with speaking. They may be so stressed about the fact they don’t that they can’t speak, that they have tantrums and upsets and it impacts other socialization. So it’s not enough to say that the behavior is there. The question we always have to ask is why is the behavior there? Why is the difference in socialization there? Why is the language delay there? Why is this hypersensitivity to stimuli, to loud sounds, to crowds, to unexpected change, to the foods that I try to avoid or that they bother because they touch? Why is that? We have to ask the question, why is it there? And not just stop superficially and simplistically say it must be autism, because in those cases we’re doing that individual a disservice.

And I’ve seen individuals who’ve been put in therapy for autism for years when they actually had a different condition that was much easier to manage when we labeled it appropriately.

Matt Eaves
That last point is interesting because as I was diving into this, and for those that aren’t familiar, we’re referring to this this social media trend where people label their post as a touch of the autism. Right. And so and I think to your point, they’re identifying traits that are, as you explained, are on the spectrum, but those in and of itself may not be core autism. But as you just talked about, is there danger, one in self-diagnosing and then even getting into therapy where someone may accept that diagnosis and perhaps it’s not from a pediatric neurologist, as we talked about earlier, there are unqualified or maybe not as qualified?

Max Wiznitzer, MD
Underqualified.

Matt Eaves
Underqualified, yes. There you go. That’s a better way to say it.

Max Wiznitzer, MD
They could be qualified if they learn how to do it appropriately, but they may not have learned how to do it appropriately.

Matt Eaves
So, maybe where I’m going with this is there’s probably a small group who are not diagnosed who could benefit from this, but then there’s also a group who are self-diagnosing, perhaps don’t have it, and then finding themselves in therapy, whether it’s online or these places that you can go that will accept it. Is there danger in that or what is the outcome of that? Or how should we be thinking about that?

Max Wiznitzer, MD
The danger is when you don’t confirm that the diagnosis is accurate. You have to be evaluated by someone who understands autism spectrum disorder, who has been well trained in the evaluation and management of autism spectrum disorder. And just didn’t take some weekend course. And all of a sudden at the end of the weekend course now they have expertise in that topic. So it’s good when people ask the question. For instance, just last week I had I had a parent come in and that was a question that the parent asked, and the parent was spot on. The child has autism spectrum disorder as the parent suspected. So one is it’s good that you raise the question, but two is it has to be evaluated appropriately to figure out why those behaviors are there.

Because maybe you’ve got something else, but it doesn’t matter if something else is there. That’s still something that may need intervention and treatment, whether it’s medication, whether it’s therapy, whether it’s both, so I think it’s good that you do that, that you raise the question. It’s not so good when you glibly or assumed that must be it in the absence of corroboration.

Matt Eaves
And you think some of this comes from if I’m a I’m a teenager and two of my friends have been diagnosed and are taking medication and I identify that I have similar traits as them, but I’m not on medication, but they seem to be doing well. Does that then lead people to say, if I just had whether it’s medication or some form of therapy that I might be better off?

Max Wiznitzer, MD
Yes. Yes. But again, it’s, it’s, it raises the question of what’s going on. Do you actually need to be diagnosed? Is it something really happening that needs an intervention? What is the appropriate intervention for that individual, not just the basic cookie cutter approach, because I label you as being on the spectrum and it’s very simple. We have children. If they have a bad day, they don’t want to cooperate with testing, I guarantee they’re going to get a bad score. And with people not understanding why that score was what it was, may automatically assume they must be on the spectrum. When the kids really aren’t. You get them to cooperate, you might find the scores totally different. We actually had one little boy who was throwing little fits. It turns out he went at lunch, they fed him lunch, and after lunch he was quite cooperative. And it turns out he was not on the spectrum.

Macie Jepson
I just keep thinking about people who are listening to this. They came to this podcast for a reason and how they might be feeling if they thought, you know, it’s cool to be quirky and and now they have a label for it and they put themselves in a box, along with a lot of other people who are calling themselves on the spectrum right now. And I do have to wonder, are they disappointed to hear what you’re saying? I’d love your thoughts on that, but I’ll I’ll piggyback by asking you. We saw an increase when we when we discovered that there was a spectrum. But but but what are the numbers now? So it’s a twofold question.

Max Wiznitzer, MD
The numbers now is about 1 in 30, if we if we believe those numbers. Other studies have suggested perhaps that 1 in 30 would be close to 3%. Other people feel that it’s closer to 1 to 1.5%. Studies that have been done elsewhere in the world, I tend to believe the latter numbers rather than the former numbers, because I think the the former numbers subsume a group of individuals who do have some sort of developmental challenges. But but the label of ASD is may not be the appropriate one for them. And not to go back to your question about quirky, there is nothing wrong with being quirky. If because we don’t want people to be cookie cutter, we don’t want everyone to always be milquetoast, homogeneous. All the same, it’s good that there are differences because you really raised the question of the concept of neurodivergence.

And in a way, I don’t subscribe fully to that concept because I believe everyone is their own person and we have to respect them for who they are. And how can we say that you’re neurodivergent because you have this fascination with Star Wars and otherwise, okay? Or people say, weird Uncle Ned, who was who was had his train hobby or something like that, but who says that that there was anything wrong with it? And that’s the key point. I think that we have to be careful about labeling. And, and to some degree, when we use words, if we use them appropriately and we understand why they’re being used, that’s good. But otherwise, just to say because you’re not marching to the same drummer as I am, therefore there’s something wrong with you – that I think we should not immediately say.

Matt Eaves
What does neurodivergent mean?

Max Wiznitzer, MD
Neurodivergent just basically means that there’s a difference in your functioning. And it’s it’s in a wide, wide scope, from a neurologic standpoint, whether it be your social functioning or your or cognitive functioning or your behavioral functioning to some degree. It could also be some of your motor skill functioning from what would typically be expected for the population, but that doesn’t mean there’s anything wrong with you. That’s just who you are. And that’s the key point. Otherwise what happens is we start setting up categories, the better and the worse if you want to think of it that way. And that’s not appropriate in our society. When we when we start setting up those kinds of categories, we start stigmatizing people.

And we may inappropriately put people in certain categories where they don’t belong. Instead, we recognize, respect and if needed, we help those individuals where help is needed. For instance, if I have a person who has a significant anxiety disorder, I’m not going to let the anxiety control them for the rest of their lives. And this is what the children tell me. They don’t want to have anxiety control them. It limits and stifles their existence. You want to help them learn. How do I control it? That doesn’t mean you can’t have some anxiety. It just has to be that you get to the point the anxiety is not interfering with your functioning in any meaningful way. So the other thing with neurodivergence is it’s perfectly fine for those individuals as long as we respect who they are.

Matt Eaves
Yeah. And perhaps I don’t know all the background here in terms of who’s saying this, but I feel like this is one where there is a lot of self-diagnosis going on in terms of that term. Where I noticed it, where it first came to light for me, is my kids are college-aged, one in college and one getting ready to go. So a lot of college tours. And when you sit in the room and you watch the video and they’re telling you all about the college, they do the student testimonials, and many of the students in the videos will introduce themselves as, you know, I’m Matt Eaves and I’m neurodivergent. And so it’s always caught my attention of like, what is that? So you just explained it that, yes, it’s becoming more popular, so to say. Right?

Max Wiznitzer, MD
It’s a label that might be recognized but should not be overused. They have their personalities. They have they have things that they like and that they don’t like. And we have to recognize that they communicate in their own way. I was talking with a mom the other day where her child’s communication is by screaming, because the child is nonverbal, and that’s fine. The child gets his message across very, very strongly in that situation. Of course, you want to teach alternate ways of communicating that are more socially appropriate. But the idea being you would call that neurodivergent. But I would just say this is a coping strategy for that individual.

Macie Jepson
I feel like we’re at a time in life that people really want a label. As a parent, I’ve always had the approach that I can handle anything as long as I know what I’m dealing with. I need to know what I’m dealing with, and then we’ll take it forward. Is that what this is about? Where people just feel like they need to put a name on something? And with neurodivergent, I wonder, is that the umbrella? And then under it is autism spectrum, social anxiety, etc.

Max Wiznitzer, MD
It’s palsy, intellectual disability and all the other conditions. Yes. The answer is yes. But then I’m trying to figure out who’s not going to go under that umbrella. To some degree, that’s the whole point of what we bring out. But you’re correct. People like to have a label that they want to give a name to. What’s going on? It makes me think about, conditions that that, for instance, that we’ve helped diagnose, rare genetic disorders, where once we’ve identified the reason why it was there was just a lot of relaxation. Mental relaxation by the parents. Now, I know what I’m dealing with. It didn’t change at all, but they had a name. But we have to be careful not to over name, as you had asked before.

But individuals, especially adults who may not have so many features during childhood of anything significant, but in the adult years because they’ve got some of the behaviors, as you mentioned, some of the symptoms, who are looking for a label and they come across autism spectrum disorder. In those cases, it may not be as helpful because you may not be addressing things appropriately.

Macie Jepson
I want to revisit a question that that I asked you earlier. Are we seeing an increase in cases?

Max Wiznitzer, MD
The answer is yes. If you actually look at the surveillance that’s been done by the Centers for Disease Control and Prevention over the years, the numbers have steadily been going up. And as I said, there’s reasons for better recognition. Better surveillance, not only recognition, we know what it is, but also the ability to actually go and look for it. As well as other factors: children born to older parents, just more genetic reasons why that might happen. But it’s also broader, because the diagnostic criteria truly have changed from the Diagnostic and Statistical Manual, the basic reference book for psychiatry and psychology. From the DSM-IV to the DSM-5, the criteria are significantly broadened. So more people would now fall under the umbrella.

And when you take all those factors together, in addition to many of us over-diagnosing it in a subset of individuals, you see these bigger numbers.

Matt Eaves
Can we switch gears a little bit to once diagnosed, what does treatment look like? What are the things that you’re doing to help? Or are you able to make improvements in the things that maybe in terms of having trouble interacting socially or some of the characteristics we talked about? What are what are some of the things you’re doing or what does a treatment plan look like?

Max Wiznitzer, MD
Treatment planning spans several parts. First is dealing with the core features of an autism spectrum disorder and addressing them. There are therapies that have been developed. Initially, applied behavior analysis is the umbrella under which it all falls. We had discrete trial training, which was started called the Lovaas method, which was the original method. It helps a minority of individuals but doesn’t help most. There are some weaknesses in it. Other strategies have since been utilized with greater success. And you can see growth in these individuals, both in terms of the social behavior and the communication skills, not as much in terms of a decrease in the repetitive behaviors and restricted interests. Those you can you do a lot of therapy, but you may not see as much as there.

But in addition to that, it’s important to identify the coexisting or comorbid conditions that go along with an autism spectrum disorder. When we look at them, up to half the children would be hyperactive. And the kids who are truly diagnosed with ADHD, treating the ADHD makes it easier for them to learn, makes it easier for them to interact with those in their environment, and therefore helps them grow better in terms of their potential developmental outcome. Individuals with significant anxiety that interferes with their day-to-day functioning, you treat it again. It leads to an improvement in their functioning. But if they have problems with their coordination, they can have problems with fine and gross motor skills. You work with those and help them improve the fine and gross motor skills, or you provide adaptations so that they can function appropriately.

So to give you an example, someone who has difficulties using a regular spoon, you can get a bigger spoon or weighted spoon that makes it easier for them to do it. And therefore being successful means less aggravation, less upset, less stress that’s present. If we see epilepsy, you treat the epilepsy. Obviously they will function better. So it’s two parts. One is a therapy that’s directed towards the autism spectrum disorder itself. And second is treatments that are directed towards the coexisting conditions that go along with an autism spectrum disorder, whether it’s a language impairment or the other things that I had mentioned beforehand.

Macie Jepson
It’s quite complex. And I think what bothers me the most and what brought us to this discussion in the first place, is this perceived minimization of it all, or are people literally misunderstanding themselves? However, it’s brought these conversations to the forefront, more people are talking about it. So I’m frustrated by what I see. But is this a good thing or a bad thing?

Max Wiznitzer, MD
It’s a good thing if people talk about it, identify that there’s issues going on with them, and then rather than just saying, I must have an autism spectrum disorder because I looked it up on Google, going to see a trained professional who can investigate this further with them and come to the correct and accurate label as to what exactly is going on and what interventions are needed for that. That’s that’s the key thing that’s there. It’s interesting for the kids who truly have some spectrum disorder as they grow up, as the majority of those individuals, many of them are quite happy and satisfied, especially the the ones with profound autism. Because I ask this question of parents all the time, they’re very happy with their existence. The parents are somewhat disappointed.

They think their quality of life isn’t that good, because they’re concerned about what the kids might have been like. But the kids are not. These are young adults who take pleasure from the stuff that they do. And for the most part, they have a good, good time. There are concerns with the higher functioning individuals, especially when you don’t intervene and manage appropriately in terms of identifying, especially coexisting conditions. There is an increased rate of depression, there is an increased rate of suicide. There are negative things that can happen, when the management isn’t there.

Matt Eaves
So in that case right there, we’ve talked about there’s potential harm sort of self overdiagnosis, but there’s also potential for those that really do have it but have seemed to manage through it. Or I’m not sure if I’m describing that correctly, that if some of those aspects aren’t addressed or treated, that could lead to things like depression.

Max Wiznitzer, MD
There’s great potential for these individuals. A good example is Temple Grandin, there was a book written about her. There was’s an HBO movie made about her. And Temple has grown over the years, even as an adult and improved it herself, with support and aid from friends and individuals. And she’s quite successful in terms of her career, her expertise and her ability to function.

You know, some people see this as a death sentence. It is not a death sentence. It is. And I believe we should never look at it that way. What we have to do is look at what the potential of the child is. And when we’re dealing with the child, help them try to work, try to maximize the potential as best as they can.

That’s the key point, to do that. Because when you see them as adults, when they’ve hit that point, it’s really interesting how well they do. We have to have more resources, especially for the higher functioning individuals. And higher functioning basically means normal intelligence. That’s what, technically speaking, higher functioning means. We have to have more resources. We have to have more social research. It’s a myth that they don’t socialize. They maybe think about Sheldon Cooper in The The Big Bang Theory. He tries to socialize sometimes yes, sometimes no. He’s very awkward in this socialization. He develops relationships. And I think he’s a good example of what individuals can achieve. And if we give them the opportunity to do it and don’t automatically assume it’s all doom and gloom.

Matt Eaves
It’s interesting you use Sheldon as an example. If you watch that show and based on observing his behavior over the years, would you define him as autistic?

Max Wiznitzer, MD
I would say he’s on the autism spectrum. Yes.

Matt Eaves
And specifically what about it in terms of autism? Because I think sometimes people identify, even myself, with some of his OCD type behavior.

Max Wiznitzer, MD
Yeah, that’s OCD. Correct. That’s a coexisting condition. But the key thing is social behavior. You watch the young Sheldon, he was this way as a child also. That’s different than OCD personalities. Those tend to ripen over the years and we’re not here to talk about them today. But from the beginning there were differences in his social behavior, and his inability to read people. An inability to really work in a room. And I think one of the great, great, episodes is when they taught him sarcasm. Because these individuals frequently have difficulties with inference. So they’re somewhat concrete. They’re literal. But they may not necessarily be able to say, so what emotion do you think that person is feeling at the present time? Or how would you interpret what would be the next step in the action?

If you watched the show, which I have, you’ve also seen the growth the Sheldon character made over time with the input he had from his friends and how much better he got over the years of the show. And that is actually a pretty good example of what can happen. I’ve got adult patients who are doing quite well, and and are interested in socializing and go to social gatherings and are interested in relationships. So it’s a myth that that can’t happen.

Macie Jepson
A lot of people listening to this are saying, I know a Sheldon, how do we help them? How do we step in or should we? Because you said at the end of the day, there needs to be a diagnosis. So that you can live with your personality and understand what you’re dealing with.

Max Wiznitzer, MD
We see the Sheldons, they still come to us as the teenage years. Individuals where the pediatrician or the parent has raised the question to the pediatrician: is something different in their social behavior? Let’s let’s explore this further. So the way we help them is if they do not have a diagnosis. And many times they may have it. We may know Sheldons who have the diagnosis. Make sure that they’re getting the interventions. They need the social skills training, and that you’re treating the co-morbid or coexisting conditions that are also present so they can do the best they can do.

I don’t think we would necessarily expect the Sheldon character to always give up his routine that he likes to follow. But the question is: is he flexible enough that if other people don’t follow it, is it okay? And by the end of the series, I think we we saw that it was okay if other people didn’t at the beginning of the series. That was not what happened.

Macie Jepson
As loved ones and friends of people, sometimes looking from the outside in is pretty revealing. How can we as as loved ones and friends help someone who is dealing with these situations and could benefit from giving an answer?

Max Wiznitzer, MD
Use the resources that are in the community. We’ve got great resources. Autism Society of America, Autism Speaks, here in town in the greater Cleveland area. We have Milestone Autism Resources that recently merged with another organization, but still provide all the other supports. By hooking up with them, you can talk to other parents if you’re a parent, or other family members. These individuals can interact with other individuals that are there. They have offerings and activities that are present. I call it the bottom line. Become an informed consumer about the topic. So therefore you know what should be done.

Matt Eaves
Any other pieces of advice or anything you want to leave us with?

Max Wiznitzer, MD
Many times, when a family comes in and they identify a child and say, we think our child has autism, I say to them, what behaviors do you believe are interfering with life at the present time? And many times, the behaviors are more ADHD or more anxiety based.

I’ll say to them, let’s treat those and let’s see what’s left over, and then see if this autism label still holds or doesn’t hold. So the key thing is, it may not be as much the name as identifying what is negatively impacting life on a daily basis that needs to be addressed, and recognizing specifically what it is, and not just saying, oh, because he’s hypersensitive to stimuli or to this or that it must be the autism. It may not be autism and may be something else that’s driving it. And we have to do something about that.

And with those children, sometimes it turns out, yes, they do have an autism spectrum disorder. And other times it turns out they don’t. May I give you a good example? A little girl, 2 or 3 years old, gets sent to me for a diagnosis of autism. And she had glasses on. She doesn’t make any eye contact at all until about six inches from her face. Once she was six inches from my face, she played with me. She interacted with me, she did all sorts of things appropriately with me.

And I said to the family, let’s get her eyes rechecked. She comes back three months later wearing glasses, walks in the room and says, hi Dr. Wiznitzer – and clearly didn’t have autism, but people thought she might because she wasn’t making good eye contact and no one asked the question what else might be a reason why you’re not making good eye contact?

What else is a good reason why you may not respond to your to your name? Well, according to Helen Keller, it would be because you’re deaf and nothing more than that. It’s not because you have autism. So that’s why you always have to be open-minded and ask the question, why?

Matt Eaves
Doctor, thanks for joining us today.