- Autism is in the national spotlight with press conferences, cabinet meetings, and promises of answers from the Trump administration.

What is autism?

What do we know about it?

Tonight on "Health Matters," we're separating fact from fiction in the national conversation about autism.

(gentle music) Good evening, I'm Aaron Luna.

The conversation around autism has exploded in recent months.

Tonight, we're going to look at the statements being made by people in power and examine what the science says.

Joining us tonight to help navigate this complex topic, Holly Goodman, founder and executive director of the Isaac Foundation, Dr.

Catherine Cairney, a fellow of the American College of Obstetricians and Gynecologists with MultiCare, Dr.

Bridget Thompson, a developmental behavioral pediatrician.

Thank you all for joining us.

Let's start with the basics, before we can evaluate the claims being made, we need to understand autism.

Dr.

Thompson, what is autism spectrum disorder and what does the diagnosis mean?

- Autism spectrum disorder is, like you said, a spectrum.

It's neurologically based.

It's something that we say is prenatally determined.

And what we're really looking at when we say autism spectrum disorder is we're clinically diagnosing people with saying, do you have a deficit in two main domains?

So your social communication skills is one of those domains.

And the other is that you have restrictive, repetitive, stereotypical behaviors.

And there's checklist within these domains when we're diagnosing that you have to meet strict criteria for.

But overall, once you've met that criteria, then we're looking at, do these certain behaviors that we're seeing, impact our daily functioning and that we don't see have a cause from somewhere else.

- Right, now, let's look at some of the specific statements that have been made.

First, the characterization of autism as an epidemic and the claims that it's caused by environmental factors.

At a press conference earlier this year, Secretary Kennedy said autism was an urgent and preventable public health crisis.

- This is a preventable disease.

We know it's an environmental exposure.

It has to be, genes do not cause epidemics.

They can provide a vulnerability, you need an environmental toxin.

And Irva Hertz-Picciotto pointed out that because of this mythology at 10 to 20, that the amount of money and resources put into studying genetic causes, which is a dead end has been historically 10 to 20 times the amount spent by NIH and other agencies to study environmental factors, to study exposures, to study external factors.

And that's where we're gonna find the answer.

- Kennedy often points to CDC data showing autism now affects one in 31 children as of 2022 data, up from one in 150 in the year 2000.

Well, let's talk about these numbers.

Autism diagnoses have increased significantly over the past two decades.

And Dr.

Thompson, what's happening here?

- That's multifactorial of, as we have seen of back in the early 2000s with one and 150 children were diagnosed with an autism spectrum disorder.

And now, like you just pointed out, it's one in 31.

And what we have seen and what research and the studies have shown, is that part of this is due to broadening the definition of autism spectrum disorder Prior to the DSM-5, in the DSM-4, we used to classify autism as the five different distinct diagnoses you could have many people have heard of like Asperger's syndrome or PDD-NOS.

And so what the DSM-5 did is when we looked at that of now it is one umbrella diagnosis that we say the autism spectrum.

And that along with awareness, we're much more aware, even in society right now, educators are help pointing out some of these missing skills.

The physicians are diagnosing, younger parents are much more, they're more aware of what should they be looking for.

And so with that, we know that these kids are coming and they're, you know, being evaluated more frequently.

- So it's not a situation where we aren't seeing actually more cases, we're just having a broader net to identify more cases it sounds like what you're saying.

- That is part of it.

Some of it's reclassification as well of things that we used to diagnose that we still diagnose for people, but like intellectual disability or learning disabilities 20 years ago that might have encompassed a lot of kids with the autism, you know, spectrum disorder that now we have labeled differently and that we've seen with that increase with autism diagnoses, we've seen a decrease in diagnoses in these other areas that is pretty comparable.

And so we do think that yes, there is likely that there is some increase, but it's not to the extent with all of these other changes that it is the, you know, increase by 300 times.

- Like I might have brought my kid in with concerns 20 years ago and been told that they had a learning disability, but now they would be better classified and more specifically targeted in a better definition and a broader definition, hopefully to access services and access additional treatments that will help them.

But the broader definition helps.

- Yes, I think it encompasses that we're able to classify more children into this and correctly, instead of labeling them under diagnoses that we weren't quite sure, but it was kind of that catchall of like, oh, we're going to treat this kid, you know, this way.

I think that having the autism spectrum now, we're able to tailor those treatments more individually.

- And when did these changes in diagnoses begin?

And what are the demographics we are seeing this in?

- I can't remember if the DSM-4 to 5 was 2012 or '13 and I always get confused my starting again, what, you know, what exactly was that?

But right within that time is when we changed that classification system.

But I think that awareness also that that was all happening around that same timeline.

The parts with, of which people is this impacting the most is what we're seeing is that a lot, before, girls weren't being diagnosed as much or as often, and that's still an area that we need to work on, but we're able, we're getting people that we're reaching, you know, more rural communities now with awareness, people with different, you know, racial backgrounds.

And before numbers were showing that these people weren't having access to care.

And now that is starting to broaden.

- I've also seen some later diagnoses now some adults who are being diagnosed who likely had symptoms throughout their lifetime, but now are receiving an autism spectrum disorder diagnosis in adulthood, because of the changes in definition - Yeah, and they might not have been, you know, diagnosed with anything back then.

Or maybe those were the kids that were, you know, sort of like, hey, learning's just a little bit harder.

Maybe they had the supports in school or whatnot.

But we are able now to reach some of those populations as well.

- And Holly, when we're talking about this, how does the language of epidemic impact people living with autism and their families?

- We don't like the term epidemic in the sense that it, I just don't think as a community it really, you know, for some autism is, you know, or they're profoundly impacted by autism so it's severe, but it's a disability.

You know, it's for some though it's just the neurological processes are different.

And so how do you say that, you know, one way of thinking or mindset is an epidemic, if you will.

But going back on when we're talking about genetics versus environmental, my experience, you know, I'm not a clinician, I'm a kind of, I guess what people would consider a subject matter expert on autism.

But the thing that I think that's interesting here is that when we talk about, there are definitely some genetic factors because if you are following a lot of the studies and if you're following studying autism, is that we are doing more genetic testing than we ever have done before, because it was so expensive.

So when my son Isaac was first identified at 15 months, this was, you know, he would be 22 years old.

So it was very expensive and we weren't studying autism to the degree that we're studying it now.

With that being said, fast forward now 20 years and we are doing more and more genetic testing.

And what we're finding is more and more rare disorders than ever before, okay?

And when we look at some of these subsets of rare disorders, there are some of these rare disorders that are being identified where 100% of the individuals that are identified with this rare genetic disorder meet the screening criteria for autism.

So yes, that is genetic, okay?

So then there are factors where I think that there can be said that there is environmental impact because I work in a world where, you know, I get people from all different socioeconomic backgrounds.

And I will say something that I think is very fascinating, I've been watching it over the last 15 years, is the number of kids that are in the foster care, the foster to adopt system who are on the autism spectrum.

And you have to then think about environmental impact.

So a lot of these young people had fetal drug, fetal alcohol exposure.

Some of them were still in their family of origin for a very long time.

And so you have to think about, you know, abuse, neglect, and just, you know, adverse childhood experiences and does that impact the developing brain?

And I think most definitely there is.

But is it something as simple as, you know, Tylenol or food or air that we're breathing?

I can't necessarily say for certain, but I do wanna just say that I do think there is some really interesting research out there where they studied identical twins.

And if you studied identical twins, they have identical DNA, okay?

So, but there are instances where one identical twin has autism and one identical twin does not.

So I think you cannot just say it's all genetic.

So you do have to start looking at environmental impact.

But I think that there are just so many that it's very difficult to then find the thread of commonality when you're talking about the spectrum of autism.

So is there a large number of individuals impacted by autism?

Yes, there is, but I think that, is it an epidemic?

No, I think that, you know, with all things an evolution of time and you know, just how we live life, you're going to see some, you know, evolution.

But that doesn't necessarily mean it's epidemic.

And again, I hate to classify it as that because you know, I work with thousands of people with autism and they're all very beautiful people.

And I think that probably the vast majority are very offended, that it's implied, that they're impacted, that they're an epidemic, so.

- [Catherine] There's something that needs fix- (indistinct cross-talking) You need to cure it.

We need to fix it.

We need to make this go away.

And that's not something we would want whatsoever for our autistic people to have to feel like that is what, you know, our goal is in this.

- Right.

- Our goal is for integration and for- - I would say inclusion integration means that, you know, like- - That is the much better word.

- Right, yeah, integration means it's like okay, we can just all file in line and we'll just integrate.

But inclusion means that we have to change a mindset, right?

And that means how we view people, calling them an epidemic is also part of what inclusion looks like, is that we don't label individuals with autism as a epidemic.

- One of the most publicized claims made this year about autism involves a common over-the-counter medication.

In September, President Donald Trump announced that acetaminophen the active ingredient in Tylenol when taken during pregnancy can cause autism.

- First, effective immediately, the FDA will be notifying physicians that the use of acetaminophen well, let's see how we say that, acetaminophen.

- Acetaminophen.

- Acetaminophen.

Is that okay?

- Yes, yes.

- Which is basically commonly known as Tylenol, during pregnancy can be associated with a very increased risk of autism.

So taking Tylenol is not good.

Or I'll say it, it's not good.

For this reason they are strongly recommending that women limit Tylenol use during pregnancy unless medically necessary.

That's for instance, in cases of extremely high fever that you feel you can't tough it out, you can't do it.

I guess there's that, it's a small number of cases, I think.

But if you can't tough it out, if you can't do it, that's what you're gonna have to do.

You'll take a Tylenol, but it'll be very sparingly.

- Then the state of Texas filed a lawsuit against the makers of Tylenol, saying, they failed to disclose the risk of autism.

And just last week, Secretary Kennedy told reporters that there wasn't sufficient evidence to say that Tylenol use causes autism.

A lot of conflicting information here.

Dr.

Cairney, let's talk about the research out there.

What studies are they referring to?

- So there have been many studies actually trying to look at a link between Tylenol and autism.

It is not a new thing to be looking at.

For at least the last 20 years, we have been evaluating how acetaminophen comes into play for pregnant women and for their infants.

There has not been a single valid study that clearly links Tylenol and autism.

There have been several that show no association between the two.

There are some studies that show that women who take Tylenol with one pregnancy and not with another, have the same likelihood of having an autistic child if they're raising them in the same environment.

Which again, hearkens back to this idea that autism is multifactorial.

It is the genes you are born with.

It is your environment in utero.

It is your environment ex utero, after you're out.

It is not a single simple answer.

- I think part of what needs to be said for those two, of those studies that they're referring to that did show that that association they cannot stay causation from it because the association, they just looked at, women that took Tylenol during pregnancy were there autistic, you know, children after that?

They didn't rule out any of the confounders of why might these women be taking Tylenol?

What is the, you know, mother's health history?

She might think is there other, and not to say like just the mother, but within the family, are there other diagnoses that we do know have a genetic link to whether it's a developmental delay, language challenges, but differences in learning.

There was nothing was looked at to where we could then say that, you know, maybe that it's truly not the Tylenol.

The mom took, you know, Tylenol because of X, Y, and Z and this is why, you know, that is the true association for autism, not the Tylenol.

- So some of the other factors are being left out.

- They were all left out in the studies.

- The studies were also retrospective.

So asking women who had children with autism spectrum disorder saying, "Oh, what did you do in pregnancy?"

And so it's all recollection bias.

You are no longer looking at- - In other words, it's not a clean study.

- No.

- It's recall.

- Yeah.

- So, yeah, I have a hard time remembering what I had breakfast yesterday, so.

- Yeah, I was gonna say, and the studies that show that there is no association, they were looking at sibling controls, so that environment is better controlled for as long as they made sure that parents were the same between it and ruling out its conditions.

And then all of that association went away.

- What are the dangers of not treating fever or pain during pregnancy?

Do those outweigh any potential risk?

- Yes, the dangers of not treating a fever are enormous in pregnancy.

And the first trimester, an untreated fever can even lead to miscarriage.

It is far more important to care for a mother who is ill appropriately with drugs such as Tylenol than it is a potential increased risk that doesn't actually pan out.

Tylenol is also commonly used to treat headaches in pregnancy.

Many, many, many headache medications are completely off the books during pregnancy.

And we don't have very many resources.

So Tylenol is frequently used for women who suffer from migraines and women who need to use Tylenol in order to function.

And that is certainly not detrimental to their health of their unborn child.

- And what are you seeing with your patients?

Has this caused any confusion, concerns?

- I think confusion, certainly.

And it does feel like a hot button kind of thing to bring up that you sort of wanna talk about.

Patients are fantastic and they're your patients because they want to hear what you think.

And in general, when you have relationships with your patients, they're happy to have the same conversation with you, like and usually are more interested in what I think than what a talking head who has clearly never birthed a child has.

- Good point.

- And Holly, how do statements like this impact parents, especially mothers of children with autism?

- Oh my goodness, I think it's throughout time moms have always felt like, you know, they failed in some regard.

I mean, I've had two boys with autism that I've given birth to, and then I have my stepson who's 22 has autism.

And there is always that thought that goes through your head that, you know, had I done something different, would there have been a different outcome?

You know, ironically in my situation, my son Isaac was a fertility baby.

So I had miscarried many times, so I never took a single thing, not Tylenol or anything, because I was so worried that I wanted a perfect baby.

I didn't use lotions and some of those other things.

And he still had autism, my children- - Oh, he's still a perfect baby.

- And he was perfect and he was beautiful.

He was absolutely perfect and wonderful.

Same to be said for my son Caleb 'cause I wanted to have another child after my son, Isaac passed away.

And again, very conservative and forward thinking and still has autism, so genetics definitely play a role.

My two children that were oopsies did I use Tylenol with?

Probably and guess what?

They're neuro typical, so.

But the thing about it is you always think what could or woulda shoulda and so, I think just women are wired- - That mom guilt.

- To guilt have that guilt.

And so when this came out, my biggest like just, it just felt like a gut punch because there are gonna be a lot of moms out there that already feel as though they failed their child because they may have done something inadvertently to have caused autism.

And then to add something, you know, as unresearched as this claim about Tylenol or acetaminophen is just, it's heartbreaking, so.

- [Bridget] So say families want answers.

- Yeah.

- (indistinct) Want answers.

We want, you know, as being a mother of a child with autism, as well, is it's as much as even like I tell you know, my patients, I'm like, this is nothing you did.

This is nothing that you didn't do.

Nothing you could have prevented.

They're still going to rack their brain and think through of every moment everything they ate during pregnancy, you know, everything they took.

And so the Tylenol is one more.

- But for me, do I want to die someday knowing the cause of autism?

Sure, I mean, that would be nice.

But it doesn't actually help me today because I'm still raising two boys with autism.

And so I need to know that there's programs and services that are gonna be in place that are going to help them live a meaningful life to the maximum extent possible.

And so my ship has already sailed.

So the cause of autism for me at this point doesn't matter less so than how about this fund programs and services that are gonna help my boys live very successful lives.

- And it's so appealing to have a singular cause.

- I was gonna say the likelihood of a singular cause is- - Yes.

- It is no - Yeah.

- [Catherine] There is not a singular cause.

- That's why it's a spectrum.

- Yeah.

- We might, maybe, I can't predict the years, but we'll be able to say, you know, if you have this specific genetic change, you know, the features that you are gonna show and the behaviors might look more like this compared to, you know, X, Y, or Z, you know, genetic change but it is still going to fall under the spectrum.

- Which brings us to our next topic.

Another statement involves the future of adults with autism, which Secretary Kennedy stating that those with autism will never be able to live normal lives.

- This is an individual tragedy as well.

Autism destroys families.

More importantly, it destroys our greatest resource, which are children.

These are children who should not be suffering like this.

These are kids who, many of them were fully functional and regressed, because of some environmental exposure into autism when they're two years old.

And these are kids who will never pay taxes, they'll never hold a job, they'll never play baseball, they'll never write a poem, they'll never go out on a date.

Many of them will never use a toilet unassisted.

And we have to recognize, we are doing this to our children and we need to put an end to it.

- What's the reality?

Do we have statistics around employment and independent living for adults with autism?

- Yes.

So, I would say before Covid, I would say, you know, the one challenge that we have when it comes to employability for people with autism is that they need supports.

And employers need to learn what types of supports are reasonable and doable.

I think that all employers, it doesn't come naturally so with coaching and support through employment coaches and whatnot, there's plenty of them out there that will help them guide them through being able to employ successfully a person with autism.

We have a lot of skills and talents that are very useful for the greater good of the world.

But again, it's thinking about accommodations.

You know, accommodations don't have to be disruptive.

And so, but with that, the challenge that we're having is some discriminations along the way, because when you have two people doing the same job, one has autism and one doesn't, we do see that there are just preconceived ideas and perceptions about people with different abilities.

And so when you look at like pay scale and advances and you know, promotional advances for those with autism, they are lagging behind.

And there is definitely a difference in the pay scale.

To that degree, it does make it very difficult for people on the autism spectrum to be able to live independently because it's expensive.

So we see people with autism living with family members or in like roommate situations for a very long time, if indefinitely.

With that being said, with the current inflation, I think that that's actually gonna be pretty the standard than the norm, if you know what I'm saying, so.

But before all of this, I would say probably it's safe to say that 75% of our autism spectrum population were under unemployed.

I think it's getting better because organizations like mine where we're out there advocating for more workforce supports and opportunities, also the federal government is incentivizing people to put people with disabilities to work, right?

So it actually ends up improving, you know, their taxes, you know, so that they get tax breaks for employing people with disabilities.

But with that being said, again, people have preconceived ideas about autism and how hard it will be employing a person with autism.

And again, we are seeing, you know, some discrepancies in terms of advancement and pay.

- And it feels like people want a cookie cutter, you know, thing of if we're gonna give supports, what are we gonna give?

It's gotta be a cookie cutter of everybody gets, you know, the same things.

- [Holly] Well we have to be fair and equitable about that.

- But it's, every single person with autism has different needs and those might look different.

They have to be vulnerable to say that they need those needs and to disclose they have autism that comes with risk on its own.

And it comes with what you were talking about of some of the things that would be difficult along that way.

But then you get stuck, you know, in that pendulum of, do I ask for what I need?

Or could I be penalized by asking for this?

- And for families who have a child with autism or adults who suspect they may be autistic, what should they do?

Where should they start?

- The challenge that we have because of our healthcare system, is that for adults to get diagnosed as adults, it's really becomes more of a self-discovery endeavor, in which case then insurance companies really are not interested in paying for evaluations for adults to be able to have some like, oh, now I understand a little bit more about myself and whatnot.

And if there's not, you know, medical necessity or it's going to improve your quality of life or necessitate an intervention, then the question is, is then why is an insurance company gonna approve the evaluation?

So I always say there's some really great online tools if you're interested as an adult, to take some of the online screenings can probably give you a good, you know, starting point as to whether or not you're on the autism spectrum.

But, you know, at a certain point too, you know, we're all individual, we have individual differences and you know, I think that just through more openness, inclusivity, you know, willingness to accommodate and think outside of the box, I think that autism is gonna be less stigmatized.

- Young kiddos, if there's any concern, always bring it up to your pediatrician or your PCP right away and that should start a screening process.

if it hasn't already begun, depending on the child's age.

Ask for a referral to developmental behavioral pediatrics or for an autism evaluation.

If you're, you know, zero to three years old, make sure that you get involved with early intervention.

Anyone can have a evaluation for early intervention.

If you qualify, great, we're gonna start services while you're on that wait list to get diagnosed.

If you don't, then that can be great news too, that everything is developmentally where we expect it to be.

- Yep, and on that, we're out of time.

Thank you all for helping us understand this complex topic.

If you or someone you know has questions about autism, talk to your doctor or contact local autism support organizations such as the Isaac Foundation or the Northwest Autism Center.

You can share this episode at ksps.org.

For "Health Matters," I'm Aaron Luna.

Goodnight.

(gentle music)