Do You Know These Truths About Autism? with Carrie Cuffman, MD

Podcast Transcript

John Horton:

Hey there, and welcome to another Health Essentials Podcast. I'm John Horton, your host.

It's estimated that 75 million people around the world have autism spectrum disorder, or ASD. That's about 1% of the global population. But despite how common ASD is, misunderstanding and misinformation often define how we think of the neurodevelopmental disorder. There are many, many myths out there. Today, we're going to separate autism fact from fiction with the help of Dr. Carrie Cuffman, a pediatric specialist in developmental behavior. Dr. Cuffman is one of the many experts at Cleveland Clinic who visit our weekly podcasts to broaden our understanding of health issues. So sit back and listen as we learn a little more about autism spectrum disorder and what it truly means to live with the condition. Welcome to the podcast Dr. Cuffman. Thanks for coming in to chat about ASD and the misconceptions surrounding it.

Dr. Carrie Cuffman:

Yeah, thanks for having me. I'm glad to be here.

John Horton:

So before we dive in and talk about what people mistakenly think about ASD, I feel like we should spend a few minutes just getting a basic background on the disorder. An “Autism 101” to get everyone up to speed.

Dr. Carrie Cuffman:

Yeah. Absolutely. So autism spectrum disorder is what we call a “neurodevelopmental disability” or a “neurodevelopmental disorder,” meaning that it's a difference in the way a person's brain takes in and processes information, and it really is called a spectrum for a reason. No two people with autism are alike. So those of us who work with kids with autism have a saying that when you meet one kid with autism, you've met one kid with autism. And that, really, I think, captures the differences we see in kids and people with autism. But despite the differences, there are some really key similarities. And so when I'm looking at a kid and doing a diagnostic workup, these criteria are what I'm looking for, and this is how we decide whether a kid or an adult has a diagnosis of autism is whether they meet these criteria.

So when I think about the criteria and when I explain them to my patients, I talk about them as being in two buckets of symptoms basically.

The first bucket of symptoms is difficulties with social communication and social interaction. And so those difficulties can look a lot of different ways depending on the person's age, their different strengths and weaknesses, and the different profiles of autism. But they all meet these three social criteria.

And so the first one is social-emotional reciprocity, and difficulties with that. Social-emotional reciprocity is the back-and-forth of social interactions. So just having a conversation as a back-and-forth social interaction, just like we're doing. But in younger kids who don't really have conversations, 2-year-olds you're not really having conversation with, this looks a little different. So it can be they're not responding to their name or they're not seeking out their parents to share their interests. All those things.

John Horton:

They just seem withdrawn it sounds like. A little bit just non-communicative.

Dr. Carrie Cuffman:

Yeah. Exactly. Yeah. Yeah. Kids with autism can seem a little withdrawn, but there can also be other more subtle difficulties with social-emotional reciprocity. Not every kid with autism is withdrawn. Some are very inappropriately social. So like I said, there's huge differences in the difficulties even within this one part of the criteria. So that's the first part of the social difficulties.

John Horton:

Yeah. So there's two more, right? There's three.

Dr. Carrie Cuffman:

There's two more. Exactly. Two more.

Difficulties with non-verbal communication. So this, I think, gets talked about a lot — eye contact concerns. And then also difficulties with using gestures, understanding gestures, using and understanding facial expressions — all those things — body language — that maybe comes naturally to many people, that understanding doesn't come as naturally to kids with autism.

And then, the last one in this social bucket is that people with autism may have some difficulty with understanding, developing and maintaining relationships. This really becomes clear often when we're talking about peer relationships. So 4-year-old kids dealing with other 4-year-old kids.

John Horton:

Which is never easy anyway.

Dr. Carrie Cuffman:

It's not easy. And no 4-year-old kid has social interactions down. But certainly, we have social expectations of young kids, and kids with autism often just don't have those same peer relationship skills that kids without autism have. Excuse me. So that's the social part of things.

John Horton:

Yeah. It sounds like there's just an awkwardness that comes out a little bit.

Dr. Carrie Cuffman:

Yeah. There can be, yeah. Especially when we're talking about maybe older kids or adults with autism. Often, the only thing a layperson may identify is that maybe they're just not as comfortable in social interactions. And that might be the only thing that somebody who doesn't know a lot about autism may notice. So that's the first bucket.

John Horton:

The “social bucket.” So what was the other bucket again?

Dr. Carrie Cuffman:

Yeah. So the other bucket is restricted and repetitive behaviors. So this is lots of unusual behaviors. And in this area, I think, kids with autism can even be more and more variable. In this bucket, there are four criteria in this bucket, but you only have to meet two of them, so you don't have to meet all of them to get a diagnosis of autism. So the first one here is repetitive motor movements, use of objects or speech. So just a lot of repetitive things. So for motor movements, what we commonly hear about is kids who hand flap a lot or maybe flick their fingers or their ears. So all those repetitive motor movements are linked to autism. It can also be things like repetitive jumping or spinning or those sorts of things. Repetitive use of objects can be things like flicking wheels on cars or waving objects in front of their face or repetitive play, even if it's pretend play, but it's very repetitive can be concerning for autism.

And then, repetitive speech is when kids take and repeat things right after people say them, which is called echolalia, or when kids are doing what's called scripting — and so they're taking phrases that they've heard other places and maybe inserting it into their speech. So phrases from favorite cartoons or things like that may make their way into unusual places in their speech. And often, that scripting has what's called the same intonation pattern, so just sounds the same from an intonation perspective as the cartoon does. So that's the repetitive criteria. So that's the first of this unusual behaviors bucket.

The second category in this is insistence on things staying the same, being really flexible in routines or ritualized patterns of behavior. So often, we see kids with autism getting very stuck on routines and maybe having difficulty transitioning from one activity to another either at home or in their preschool classroom. This is where some of the meltdowns that we associate with autism, so big temper tantrums that we associate with autism often come into play is when kids have difficulty with accepting changes to their routine or accepting when things just aren't the same. So that's the second one in this bucket.

The third in this unusual behaviors bucket is what's called highly restricted interests. Kids with autism can have interests that are very, very intense and that are unusual. So unusual interests that I've seen in patients are things like fans or flashlights or the alphabet at a very young age. And they can also have interests that are really common, but that are really intense. So a little girl being interested in Disney princesses is not so unusual, but if that's all she ever talks about, wants to do, the only clothes she will wear is Disney princesses, that's maybe a different level of interest that is more unusual.

John Horton:

It's hard with all these. It sounds like there's a really fine line between what's excessive or maybe enters onto that spectrum or what's just ... a lot of it just sounds like people sort of behavior, but yet just amplified.

Dr. Carrie Cuffman:

Yeah. Exactly. A lot of these are just personality traits, and so you really do have to look at the whole kid when you're doing these evaluations because a lot of things are just common in children anyway. So when I'm doing my evaluation, I'm really trying to take a really holistic look at the kid, get sources, get information from multiple sources to make sure we're really sure that this kid is actually meeting the criteria and that this kid actually does have autism. Yeah, absolutely.

The fourth criteria in this bucket is that kids can be over- or under-responsive to sensory inputs. And so over-responsivity often looks like fear or upset in response to sensory inputs. So think of the kid who is upset by loud noises or upset by big crowds of people. Under-responsivity often results in what's called “sensory-seeking behavior.” So some children with autism may seek out visual input — so may peer out of the corner of their eye at things — or some children with autism may really like deep pressure or weighted vests or weighted blankets, and so they really need more sensory input than is typical for a kid. Once again, we see a lot of sensory concerns, even typically developing children. So this one by itself can't be looked at on its own, but in combination with all the other things I've mentioned is one component of things that we see in autism. And so that's really the summary of the two big buckets.

John Horton:

Those buckets are, I mean, as you said, extremely filled up, and it's like, you understand why there's so much confusion about what is autism and where it lands and just how to define it. So it's a good thing we're doing this podcast.

Dr. Carrie Cuffman:

Absolutely.

John Horton:

I have to say in doing some research ahead of this, I was just amazed to learn how common ASD is. And it seems like the numbers growing, too. I saw a CDC report last year that estimated that now 1 in 36 children who are 8 years old have ASD, which is higher than previously reported.

Dr. Carrie Cuffman:

Right. Absolutely. That's the data that came from 2020, was released back in 2023, and that's the most recent national data we have. And then, there has been this steady but gradual increase over the last 20 years or so in the prevalence of autism that's being measured in the United States. And other countries have seen this increase, too, not always to the same extent that the United States has, but it's across the globe, this is true.

John Horton:

Is that just that the diagnoses are becoming a little more common as we're understanding it, or is there something else at play?

Dr. Carrie Cuffman:

Yeah. That's a great question. There's been a couple of things that have contributed to this increase. One is that there is just increased awareness of autism. You're much more likely to bring your kid in and ask about autism when you know what it is, so I think we're catching more kids. The other thing that happened in 2013 is that we had a new set of criteria actually released for autism spectrum disorder. So the manual we use, those criteria that I just talked about are listed in ... it's called the DSM, The Diagnostics Statistical Manual. And so-

John Horton:

…It rolls off the tongue.

Dr. Carrie Cuffman:

It really does, doesn't it? It's what doctors, developmental pediatricians and psychiatrists use to diagnose a wide range of neurodevelopmental disabilities and mental health concerns. And so this manual also was updated in 2013 to the DSM-5, and the autism spectrum disorder has actually enveloped several diagnoses from the DSM-4. So we used to have different diagnoses of autism — pervasive developmental disorder, Asperger's syndrome and also childhood disintegrative disorder — and these are now all under the umbrella of “autism spectrum disorder,” so we're really catching a lot more kids now.

John Horton:

That would make sense then why the numbers go up. As you're combining more of these groups in and almost reclassifying it a bit, the numbers just grow.

Dr. Carrie Cuffman:

Exactly. So that explains some of the increase.

The other big part, like I mentioned, is there's increased awareness of autism, increased knowledge in the public about autism. And then, there's also some increase probably because services are more available. It's worth getting your kid diagnosed if there is a treatment that you can access. It's not so important if there isn't accessible treatments or ability to get help for your child. So that's also thought to be part of it.

And then, there is some research that shows that there is maybe some increase that is real. The prevalence increase is partially a true increase, not to the extent that we're seeing, but we really don't know why it would be increasing in a real way. But there is some thought that it is also increasing in a real way as well.

John Horton:

That leads right into my next question, which is, do we know what causes ASD?

Dr. Carrie Cuffman:

So yes and no. We have broad overarching theories, but there are really a lot of unanswered questions when it comes to what causes ASD. So we do know that there are genetic factors that really alter brain development, and that plays a really big role in why many children have autism spectrum disorder. And there are probably some environmental factors and exposures that also play a role in why kids have ASD. So some children have a bigger genetic risk factor than others.

So there are some genetic syndromes that are related to ASD, so things like Fragile X or Angelman syndrome and many others. But even within those genetic syndromes, not every kid with the genetic syndrome gets a diagnosis of autism, which makes it really confusing at times. That the kids with genetic syndromes are really the minority of kids with autism though. So it's really most likely that for most cases of ASD interactions between several different genes as well as environmental factors cause changes in brain neural connectivity.

John Horton:

Now, when you say environmental factors, too, I just want to make sure I understand. Are you talking about possible exposure to things or is it more just DNA genetic household where you're living stuff?

Dr. Carrie Cuffman:

Yeah. Yeah. That is a great question. So mostly what I'm talking about is environmental factors that are around births or in utero exposures. These are the things that have been most strongly tied to autism. So exposure to toxins in utero, any significant perinatal insult. So a difficulty with oxygenation in utero or preterm birth, prenatal infection — all increase the risk for autism. Once again, the confusing thing about this is that no one environmental factor is always implicated in autism.

John Horton:

Something different. So you just never know what triggers it.

Dr. Carrie Cuffman:

Exactly. It's very clear that insults to the health of the fetus and the neonate are big risk factors for autism, but it is really variable still. And we really, as a medical community, have not figured this out fully. So we just know bits and pieces of the picture right now.

John Horton:

Earlier in our conversation, you mentioned how ASD is on a spectrum. Is that one of the reasons why there's just so much confusion and misunderstanding about the disorder and what it is?

Dr. Carrie Cuffman:

Yeah. I think that's one of the reasons why. It's a hard disorder for many people to understand because it looks so different in different individuals. And I think the other thing that's confusing is there are conditions that look like autism. So you have kids with autism diagnoses and kids with other diagnoses that look similar, so that's confusing, too. I also think that ASD has captured a lot of attention from the public lately, which has resulted in the awareness and the good information. But I also think there's been some more increased spread of misinformation at times as well about ASD as a result of the attention it's getting.

John Horton:

Well, you are setting me up perfectly for questions here because our next thing was going to be looking at some of these common autism myths. So let's start with this one. I see where there's people who talk about “we're in the midst of an autism epidemic,” which is a statement that just sounds really alarming. So is there any truth to that?

Dr. Carrie Cuffman:

Yeah. So it sounds alarming, right? But I don't think it's true. So we talked about earlier the prevalence has been steadily rising, and we talked about some of the reasons for that, but I think, like you said, most of it is probably not a true increase; although, some of it is. So I don't think that people need to be alarmed. And also, autism isn't something you catch.

John Horton:

It's not spreading like the flu. You're not going to pick it up on a doorknob.

Dr. Carrie Cuffman:

So I think that while it's something we should pay attention to, I also think the biggest reasons for the increase are really not things that we need to be worried about. We're just catching more kids and are able to help more kids as a result of it.

John Horton:

Definitely. That makes total sense. Now, another common and really pretty hurtful untruth about ASD revolves around it being caused by bad parenting. I'm guessing that this is a falsehood that just causes a lot of distress for families.

Dr. Carrie Cuffman:

Yeah. This is absolutely untrue. Parenting styles do not cause autism or contribute to autism in any way. It's like we said earlier, autism is a neurological neurodevelopmental disorder caused by a difference in the brain that is really present at birth. So this myth actually has a really clear etiology, I would say. The first man to describe kids with autism in the 1940s was named Leo Kanner, and he actually theorized that autism was caused by this “refrigerator mother syndrome,” which is the mother being cold and unavailable to the children. But it's really important to understand that this is where it comes from. But since then, it has never been supported by evidence. So people have actually looked at this really carefully, and this has been proven completely false. Regardless though, I think that myth has still ... even though a lot of people may not know where it comes from, it's still kept around in people's minds a little bit.

John Horton:

Yeah. That's incredible. So it is rooted in the initial descriptions of it, but it's one of those things now … it's just stuck. You've got to almost reteach people.

Dr. Carrie Cuffman:

Absolutely. Yeah. But yeah, this is really, really old information that he just proposed this theory and has been actually, like you said, really harmful to a lot of parents because there can be a lot of guilt associated with, but parenting style does not cause autism.

John Horton:

All right. Well, another theory that gets tossed out a lot is that vaccines are somehow connected to autism. And I know that gets shared an awful lot in today's world. This has been proven false, right?

Dr. Carrie Cuffman:

A hundred percent, yes. So this one also has an interesting etiology. So a guy named Andrew Wakefield in 1998 published a paper sharing the case reports of 12 different patients with regressive autism and GI bowel problems after they got the MMR vaccine specifically. A few years down the line, it comes out that this was actually fraudulently done. And he had misrepresented and just put entirely false information about these patients in his paper in order to make his case against the MMR vaccine company, who he was actually currently in a legal dispute with. So really, the paper that started all of this controversy about vaccines and autism was completely false, a lie, and so-

John Horton:

…Incredible how this stuff sticks, too. It's just so hard to scrub it off.

Dr. Carrie Cuffman:

Yeah, absolutely. So the paper is now retracted. And those in the medical community know, once again, that this was completely a lie, but it made its way into the public eye. And since that time, there have been a lot of papers and research studies that have looked at the MMR vaccine, as well as other vaccines and vaccine components. So the thimerosal component has gotten a lot of scrutiny from folks about whether it causes autism, and that has been researched really thoroughly, and there has been no connection made between autism and vaccinations at all.

John Horton:

Well, thank you very much for clearing that one up. So let's jump to another one, which I thought was really interesting, which is that many people think of ASD as a mental illness. Tell us why that's incorrect.

Dr. Carrie Cuffman:

Like I talked about, the criteria are in our DSM, which also includes mental illnesses, but it's in a completely different diagnostic category. It's in the diagnostic category of neurodevelopmental disorders, which includes other things like developmental coordination disorder, developmental speech and language disorders. So autism is completely its own category. And a couple other differences to think about are that mental illnesses are things like depression or anxiety, generalized anxiety disorder. And these symptoms really typically present at older ages, and they're not present when the child is born. A neurodevelopmental disability or disorder is present when the child is at a very young age, and really present from when the kid's born, even if we don't know it. And so the two completely arise in different ways. And mental illnesses have really clear medical medicine treatments versus autism, which does not have a medicine that can treat it right now, and it really can't be cured. So autism is really not an illness at all. It's just the way your brain works.

John Horton:

Well, and actually you've led right in my next question again, which is people do talk about whether there's a cure for autism. It sounds like from what you're saying, that is just not something that's there here right now or maybe even possible.

Dr. Carrie Cuffman:

Yeah. That's right. So yeah, there's no cure for autism, but we definitely have treatments. Currently, evidence-based treatments are all therapies and educational interventions. There are no medications, diet changes, vitamins, supplements, any of that that has any clear evidence for treatment of autism. And the therapy treatments really focus on helping kids make developmental progress to realize their full developmental potential. So all kids with autism do make progress, although this progress that they make can be variable. And that being said, many kids with autism end up very similar to peers. And there are adults with autism who live lives very similar to people who don't have autism. People with autism hold jobs, get married, have children, all of that. And most of us probably know adults with autism spectrum disorder, and you may not even realize it.

John Horton:

See, and I think that's something to really drive home in that I think this gets thrown out there. And you think autism, and people tend to think of maybe the most extreme examples of it, but the reality is there's many, many people who might be on that spectrum, but they're just entering it, and you really wouldn't even know unless you saw it somehow on a sheet, a diagnosis or they told you.

Dr. Carrie Cuffman:

Right, exactly. Yeah. There are many people walking around with the diagnosis and you would never know. It's impacting their life in some ways, but not that's visible to those of us living around them.

John Horton:

Well, we've covered a ton of ground here and just the amount of information has just been fabulous, Dr. Cuffman. So before we say our goodbyes, is there anything else you'd like to add that people should know about ASD or just that they should understand?

Dr. Carrie Cuffman:

Yeah. I have two final thoughts that I wanted to leave everybody with. First is that we went through many of the myths, but as I said earlier, there's a lot of misinformation about autism and autism treatments that's available on the internet. And so particularly if you have a child with autism, seeking out really trusted sources of information is incredibly important. Talking to your pediatrician, your developmental pediatrician. They can help you point you in the right way to reliable sources of information so that we make sure that we're taking as good care of the kids as possible.

And then second is that if anybody's watching this and they're concerned that their child has autism, I really would encourage them to talk to their child's pediatrician about concerns. We know that our therapies and treatments work best when they're done early — intervention is really, really key. So it's really important to raise concerns early and to get the evaluation done so we can answer the question and get kids to appropriate resources and therapies if they need them.

John Horton:

Dr. Cuffman, that seems like a perfect way to wrap things up. Thank you so much for coming in today and really appreciate your time.

Dr. Carrie Cuffman:

Thank you.

John Horton:

Autism spectrum disorder is a common condition that affects millions of people, but it's also extremely misunderstood. Gaining a better understanding of ASD is key to supporting those with the disorder as they go about building their lives.

If you liked what you heard today, please hit the subscribe button and leave a comment to share your thoughts. Until next time, be well.

Speaker 3:

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