From WXXI news.

This is connections co-hosting with my colleague Sara Aber monti.

I'm Evan Dawson.

Our connection this hour was made over the past month or so, when the Secretary of Health and Human Services, Robert F Kennedy Jr. Began talking more often about autism.

Now, for years, Kennedy has recycled false statements about autism and vaccines.

In the past couple of weeks, he's been making the case that some presentations of autism are essentially new to our society in recent decades and therefore have to be linked to some kind of environmental or medical intervention.

I want to listen to what RFK Jr said last week on Fox News, talking to Sean Hannity.

This is an individual tragedy as well.

Autism destroys families and more importantly, it destroys our greatest resource, which our children is their children.

And who should not be.

We should not be suffering like this is our 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.

I'll never play baseball.

I'll never write a poem.

I'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.

And let me also say that Kennedy, making some national statements.

I want to listen to what he said to Sean Hannity on Fox News as well, about how he sees in his view, a change in autism throughout his lifetime.

Anybody with common sense, Sean, would notice that because the autism this epidemic is only happening in our children.

It's not happening in people our age.

Let me get a recognition.

You'd see it in 70 year old man.

And I'll say this I want to be very careful when I say it, because, I've never seen a person with full blown autism.

I've seen many people with Asperger's and, you know, on the spectrum or at my age, I've never seen anybody with full blown autism.

That means nonverbal, not enjoy the train.

And so you don't see these people walking around them all because they don't exist in our age.

And or they're very, very rare.

They do exist.

They're rare.

It is so rare that I've never seen one.

Experts in the field have repeatedly tried to explain to Kennedy that autism is not new.

What has changed is how effective clinicians have become in identifying autism.

As STAT news recently explained, there is no simple test for autism.

So diagnosing it requires extensive training and observational techniques.

But Kennedy isn't buying it.

He wants new studies to focus on vaccines, even though the possible connection between vaccines and autism has been repeatedly debunked.

And after meeting recently with the National Institutes of Health, the NIH floated the idea of creating a national autism registry to track Americans with an autism diagnosis.

Now, this week, Kennedy's office walked back that idea.

But they say that Kennedy does want a lot more research.

Meanwhile, Kennedy's remarks about the effects of autism has provoked a wide range of passionate responses.

Many have come from families who were outraged.

You're going to hear some of their voices today.

Some of the response comes from parents who said that Kennedy's comments resonate with them in a way.

The National Council on Severe Autism says people with debilitating autism should not be ignored, and their lives are very different from people who might be described as high functioning on the autism spectrum.

So there's a lot to talk about this hour, and I want to welcome our guests.

Welcome back to the program.

Dylan Taylor, who is an autistic self-advocate.

Ben, a little while.

Nice to see you back here.

Thanks for being here.

Nice to see you again, Evan.

Next to Dylan is Jerilyn sparks.

And, someone who works in autism.

Acceptance, appreciation, awareness and inclusion.

As an advocate for nearly 30 years, the proud mother of a son with autism and his three siblings, of course.

Welcome back to the program.

Thank you for having me.

And welcome to Doctor Laura Silverman, associate professor and clinical child psychologist in the Division of Developmental and Behavioral Pediatrics at the University of Rochester Medical Center.

Doctor Silverman, thank you for being on the program.

Thanks for having me.

I'm just going to we're going to start by asking all three of our guests if they want to share some initial reactions in general, to some of what the Secretary of HHS has been saying in the last month.

I'll start with Dylan Taylor.

What do you make of what you heard?

Oh, boy.

Kicking it off.

you know, I don't think that this is anything different than, What?

Kennedy has been saying in the past.

he's always been a charlatan and a demagogue who uses autism as a cudgel to, advance his own beliefs that are constantly misinformed.

the only difference now is that he actually has the power of the government, which is, I think, as I was saying before the program, why I was so afraid when he was picked.

he's he's he was a bad choice for Health and Human Services.

Jerilyn sparks.

My first reaction was to send everybody, you know, an expletive laden text.

I got one of those.

How angry I was that my son was being described as, a tragedy.

A burden.

The first thing that RFK led with was these people will never pay taxes.

I'm like, wow.

Tell us where you really think, you know, does Amazon pay taxes?

Does Elon Musk pay taxes.

Is the measure of someone's worth whether or not they pay taxes?

And I have not been able to get over the fact that the person chosen for the Secretary of Health and Human Services is not only misguided, but against the scientific principles.

correlation is not causation, and you have to follow where the evidence leads.

And he's just shooting from the hip.

That is a dangerous recipe for someone to be secretary of Health and Human Services.

Doctor Silverman yeah.

My initial response is that he talks about not seeing adults with autism, but I also feel like he hasn't seen children with autism, because when I hear his description, it's really clear to me that he doesn't see the value in the people who have autism.

And he's not aware of the fact that autism is a spectrum, and that there's a wide variety of people with different abilities.

I also would, you know, I think it would be helpful for him to think about his family history because he has an aunt who had a developmental disability and one of his other aunts saw the value in people with developmental disabilities.

And she founded the Special Olympics.

And as a result of that, people with autism and other disabilities now are able to shine and do things that they wouldn't otherwise be able to do.

So I would invite him to think about potential rather than deficit, and to think about what ways can government really support this community so that they can be successful.

You know, Sarah and I, we work in an organization where when we have this microphone, all of our colleagues, we take it very seriously and we try to be as fair as we can.

And I want to tell listeners, if you want to weigh in on any of this, no matter where you are and what RFK Jr has said, or these issues, I want you to know that you can do that.

It's 844295 talk.

It's toll free.

8442958255263 WXXI if you call from Rochester 2639994, you can e-mail the program connections at cyborg.

You can join the chat if you're watching on YouTube on the Sky news YouTube channel.

But Sarah, this is a hard one because, you know, we are, not necessarily in we're not in advocacy.

We're trying to, in this setting, especially trying to be good stewards of public conversation, journalism, good discourse.

And someone is going to accuse me of just being, you know, some kind of loaded political hack.

And I don't want to be that.

But I also look at this and say to Dylan's point, this is the secretary of HHS.

This is someone who's no longer an activist or, someone kind of peddling in, in conspiratorial online fever swamps.

This is a man with a lot of power.

How should we be talking about how, we have to be direct, right?

When the evidence is direct, we do, we do.

And I think it's looking at the science and looking at the data and, you know, to Jerry's point, causation is not correlation.

And I think that's something we really need to, bring back into our discourse a little bit.

I think, you know, I, I'm biased because I, I took research methods a lot as an undergrad and a graduate, and I like to get my money's worth.

So it helps you out what career it has.

And and also to Doctor Silverman's point, you know, it's and we talked about this in the first hour of and it's the lived experience.

You want people at the table who have whether it's you know they're they have autism themselves like Dylan or they are a parent like Jerry, or they're studying it like Doctor Silverman.

These are the voices you want around the table.

And I think anyone, but particularly someone who's in a position like Secretary of HHS, if you come to that table with a little bit of humility and say, look, I have questions, I don't know what I don't know, and I need you to be sharing what your experience and your information and your data is with me.

I think we could all benefit from that.

Well, collective to that point, Doctor Silverman, when the secretary says we're going to get an answer on what causes autism, I want to read some of what the Autism Society of America said about that, because Sarah is talking about an empirical approach that looks at the data wherever it leads you, and then understand how to interpret data.

that's different than saying, I got a feeling it's vaccines, and we're going to find out, we're going to go get it.

We're going to go get that information.

Even though confirmation bias has been studied.

Yeah.

Motivated reasoning.

so this is this is a response from the Autism Society of America to the the comments that Kennedy has made saying that they will find the cause of autism through new research.

They say, quote, the Autism Society of America finds the administration's claim that we will know what has caused the autism epidemic and will be able to eliminate those exposures to be harmful, misleading and unrealistic.

Autism is a complex developmental disability shaped by genetic, biological, and environmental factors.

It is neither a chronic illness nor a contagion that qualifies harmful language like epidemic, and to do so is both inaccurate and stigmatizing.

Autistic individuals are human beings who deserve dignity, respect, and equitable civil rights.

Leading disability organizations, the scientific community, and medical experts agree more rigorous, science based research is necessary, not speculation, oversimplified timelines, or diminished transparency, and they also include a section in their statement and the dangers of misinformation and debunked theories in which they say claims that autism is solely caused by environmental exposures, parenting styles, or vaccines.

Not only lacks scientific evidence, but are incredibly irresponsible.

End quote.

What do you make of their statement, sir?

I think there was an easy answer.

We would already know it.

So there have been decades of research on this already, and thousands of researchers who've looked into what causes autism.

So I think what we know so far is that there's a significant genetic component to autism.

There are also other factors that contribute to a higher likelihood of autism, especially if you have a genetic likelihood.

So for example, there could be some things in the environment.

There has been research on things like pesticide, IEDs, pollution, aspects of the family and the prenatal environment.

So parental age at conception, a higher parental age, and I think there's complexity there.

So I recognize people don't like uncertainty, but I think that's something that you have to sit with here because there is no easy answer.

And I also think the research community would love to do research into aspects of the, of, environmental exposures, as long as there's an understanding of everything that we know so far.

So how would you take that data and really integrate it with what we know about, biology, genetics and other factors.

So and I think if Kennedy were here, part of what he would say is, well, I didn't notice it when I was growing up.

There wasn't, in his words, severe autism when I was growing up.

Something has changed.

Is it fair to say in any way that autism is new, that it only really is a recent phenomenon, that it wasn't around 5070 years ago?

So I think it has changed.

When he was a kid, the definition of autism that exists now within our diagnostic systems didn't exist when he was a kid.

That's what's changed.

Yeah, that's a big part of what's changed.

It doesn't mean that people who had the same condition that's called autism didn't exist back then.

It just means that we didn't call it autism.

We didn't know about it the way we know about it now.

It also means that there were there was different policy in place, so that people weren't identified and there weren't necessarily supports in place for them.

So people weren't looking for an autism diagnosis, partially because the science wasn't there yet, but also because there weren't reasons to do so.

So now in schools, you can get an autism classification, which leads to lots of supports so that your child can be successful.

That didn't exist back then, but Kennedy is 71 years old, and part of what he's saying is when he was in his 20s in the 70s, he didn't notice people with the conditions that we call autism.

Is that compelling to you?

I mean, I think a lot has changed since then.

So the people that he's thinking about were probably institution allies back then.

And we have a very different system now.

Yeah.

You know, Rosemary Kennedy wasn't was institutionalized.

They tried an experimental treatment on her when she was 22, a lobotomy.

And it ended up being a disaster.

And they sent her away to another state, I think Wisconsin, I believe it was we could spend a whole two hours on that alone.

Institutionalization.

Yeah.

And the history in this country.

Absolutely.

And it's a and it's recent history.

You know, we talk about Kennedy being in his 70s, but so are a lot of these other people.

This is very, very recent American history.

And you know, we could delve back into it.

Well, one thing I would like to say is the thing that really enrages me about that, about RFK is he's saying, well, if I don't see it, it doesn't exist.

So I am the, you know, the arbiter of all information, and he needs to get out of his bubble more like go out into different parts of the country, go visit hospitals, go to strong hospital, invite him.

Strong hospital.

Invite him here.

Let's show him what he isn't saying.

And don't even think that he has ill intent with saying that.

I think he's just got that much tunnel vision and arrogance.

I don't know about his intent and I try not to ascribe ill intent.

Yeah, I don't think most people lie in bed at night thinking I'm a bad person.

I got away with it.

I think most people think they're on the right side.

Yes, things he has been hearing from people like Doctor Silverman for years, and at some point I'm wondering why that hasn't registered.

I thought about that too.

I think two things I do think it's arrogance.

and I also think that there is this tendency that I've seen in my, personal life where people don't want to feel that anything in their family calls what he deems a tragedy.

They were looking for something to blame.

Instead of saying, you know what?

Autism is a different way of being.

It's always been here.

They think that Socrates probably had autism.

If you were to look at the characteristics and things that we know, that's way before vaccines, way before food dyes, way before air pollution, way before all these things that they're saying are causing epigenetic changes.

And the thing I would say about epigenetic changes is you still have to have the predisposition for the epigenetic change to act on.

so let's do this here.

I want to address a couple of the couple, the, the ripples that have kind of come out of the last month with our guests, and then we're going to open it up to some of your feedback listeners.

but the first of those is very consistently I saw people responding to RFK comments by basically saying, have we do we have too broad spectrum?

You know, Dylan, I'm just going to clumsy.

Okay.

You mind if I say something clumsy I don't mind, I don't mind, you don't mind clumsy.

That's that's that's before.

So most of my interactions with Dylan, probably the first time was about your autism.

Yeah, but probably every time since then, before today has been about politics.

Yeah, but you're someone who has done a lot of work in politics.

I think you're very insightful person.

I love talking to you.

You know, kind of nerding out with you about it.

Don't like on the short list of people, like when big political stories.

Like, who we going to get really thoughtful like, don't on that list.

And I don't know if I had not talked to you first about your autism, but I would have thought, hey, there's somebody with autism.

I don't know what that means about me.

I know what it means about society, but I don't know that I would have identified that.

And I want to ask you, how did how does autism what does it mean for you to have autism?

Yeah, I mean, I think part of it is the knowledge that my, my, my diagnosis didn't come late.

It came when I was eight.

I got it from the University of Rochester.

but I think back then it was to a level more noticeable, even in school they noticed, I you know, I was engaging in an activities that that the average child did not, I didn't really play with my classmates.

I played next to my classmates.

Something closer to what we would describe as parallel play.

as I got older, it it is less noticeable immediately.

However, the the frustration for me comes in, I am I am still not great at reading social cues.

I'm kind of guessing my way through a situation.

I still have very strong, reactions to sensory input.

but I have also had to do a lot of work to kind of tone down my reaction to that.

and I would say the fact that I can talk about politics, there's a reason why, and it's because I spend a lot of time reading about politics.

It is it is, what one would describe as my special interest.

Okay.

I can Robert Kennedy said that autistic people don't date.

I can tell you that my actions have complained.

I talk.

Hey, Dylan, please put down the computer.

Stop drawing redistricting maps.

It is our date.

You know it?

it is how widows.

Yeah.

You know, I, I apologize for all my exes who have had to make that complaint.

But, you know, there are these moments where I'm really.

I'm just not.

I do not think about others.

it actually, I actually have to think in my head.

What is this other person thinking that does not come naturally to me?

Okay.

do you struggle with sarcasm, understanding sarcasm?

Oh, yeah.

Yeah.

That's, I, my my, my father, said when I and I actually wrote my college admissions essay and that's.

I was so bad at it for so long.

He said one year, maybe Santa will bring you a sense of humor for Christmas.

Well, yes, it sounds worse than it is, because I was.

I think I was making the same.

Why did the hamster cross the road to get to the ham?

Because I thought that was hilarious.

and I was ten, and I was a little bit behind developmentally with my ability to make jokes.

And I still miss it a lot.

But, you know, I think that there's it's a lot easier now.

So when you talk about what RFK said about some people with autism, we'll never have a date.

They'll never pay taxes.

They'll never be able to take care of themselves.

What RFK would say is that, in fairness, he was talking about people like Jerry, son, not about Dylan, and that the argument that I'm hearing from some observers is the spectrum is so broad that Dylan and Jerry son should not be given the same diagnosis, that it's a different thing, that they have different needs.

What do you think of that, Jerry?

are there, different levels, severity of depression?

Are there different severity levels of anxiety?

You can have a generalized anxiety disorder.

You can have one that makes you, debilitated.

I think that the fact that is a spectrum is accurate.

Dylan and Jared, my son's name, Jared, is 27.

Have some, challenges that are similar.

They overlap, the unique focus on something to the point of being, not able to stop thinking about it can, you know, we can't go some place sometimes because he just will not stop focusing on something that and, I think is the clinical term.

And I don't know about Dylan, but my, my son and I have two other sons who are not, technically autistic, like my son Jared is, but they all had language delays.

speech, speech was really difficult for them.

They had, delayed toileting, and yet you wouldn't put my son's in the same category with the same mother, same father.

And yet I think that, you know, if they were here today, my two older sons who are classified as typically developing, probably if they were born today, would be considered, on the spectrum.

So I think it's accurate.

And I think that, again, this one sidedness, on our case, part where he just absolutely cannot see nuance, he cannot see anything except his own, predilection.

He just cannot see it.

And this is where I worry Sarah, Marty, that when we try to do the work that we do and XXY, when everything gets politically charged, it feels like you got to pick a side and whatever side you're on, then you're going to lose half your audience.

And I don't want to live in that world.

I want to be able to say, it does not matter to me where an idea comes from.

A good idea, it's valuable.

Doesn't matter what political team or political tribe it comes from.

doesn't matter who is right or wrong here, but it feels so charged, and I, I think the work gets harder when everything feels so loaded.

I think so, too.

You know, even just looking back a couple of years ago, you know, we were in a different situation culturally, politically, disabled was seen as, as one of those bipartisan issues that we could all get together on.

And, now you are seeing it more politicized and it's being weaponized in a way that I don't think we've seen necessarily in the same way, in the past.

but for us here, you know, our work at Zion with move to include is really to bring all of these voices in and to prominently feature in, uplift the folks in our community and the organizations in our community, that are doing the work, like, you see, and then having folks like Dylan and Jerry come and share their personal experience and getting those, those voices around the table, because I think a lot of times, even though we talk about the statistics of, you know, general disability, overall, 1 in 4 American adults identify as having a disability.

That's the latest CDC statistic.

And it's only going to increase as we are an aging population.

things like you were saying, Doctor Silverman with like advanced maternal age and things like that, these statistics are only going to go up.

So it's it is kind of rare for folks to not have a lived experience, whether direct lived experience or with a family or a loved one of disability.

But that being said, that doesn't always to Gerry's point, that doesn't always give you the wider breadth of experience.

And so what we try to do is bring as many voices, as many experiences, as many, opportunities for folks to tell their own stories to the table.

And then, you know, I think we have a really educated and and thoughtful audience that's going to take those that information and apply it to their own life and say, you know, how does this change my perspective?

Is this something I want to get involved in?

Should I talk to the folks around me?

you know, the vast majority of people with disabilities are like myself.

You know, I have a non apparent or invisible disability.

And if I were to walk into a room, it's your point about Dylan.

Like you may not you may not immediately clock it as someone with a disability.

and I think that's true for a lot of folks.

So interrogating and, and thinking about who is in their network, in their social circle that they, that they encounter every day and having, a little bit of curiosity and grace.

Yeah, I think that's really well said.

And I'll give you an example of how I think what ends up happening when we become overly politicized.

I can understand intellectually the argument.

That's why I ask the question is the spectrum too broad?

Is a Dylan dealer.

You know, maybe Dylan can talk about his life and his experiences, but should the diagnosis be different than someone like Jared?

I can understand where people might feel like the answer should be yes, or why it would be yes.

Although I. I find myself pretty, I find Jerry's points pretty compelling.

There's different degrees of ankle sprain.

There's different degrees of depression.

I so I get that the problem is, instead of an open discourse and a give and take about that, like, can we do it better?

Or should we compartmentalize more and should we, what we end up having is like, well, now it's broader than it used to be, and it used to be one and 100.

Then it was 1 in 88 and it was one and 76.

And guess what that means?

It's probably vaccines now.

Like that's where it goes.

And it just doesn't need to go to these places.

Well, can I say something about vaccines?

I have I know, vaccines that they're talking about.

The MMR was released in the 1960s.

Leo Kanner described autism in the 1940s.

20 year difference there.

I'm at to a family reunion with my ex-husband.

Brilliant people, brilliant.

And there was people there that today would be diagnosed.

But the diagnosis didn't exist back then.

This is like 30 years ago, before I even had my son, because I went to that reunion when he was diagnosed, I'm like, oh, I get it.

And he was the first in the family to actually be diagnosed.

And then those older people started going, oh, this explains a lot of the things that I don't understand about me.

So just wanted to say, you know, to that.

But the other thing I would say that I did not cause my son's autism and RFK is cousin.

People like my son Jared heard something about this.

And I remember when he was maybe 11, he goes, he saw something about autism.

And I said, well, you know, Jared, this is, you know, something that you have because I have autism.

It was just like a shock.

But the messaging that we're saying that the autism is a tragedy, my son is internalizing that whether or not he can verbalize that or not.

And I'm sure that you also see that Doctor Silverman.

Yeah.

Clinic.

Yeah, I'm seeing that a lot.

And we're we're getting a lot of calls in clinic about the messaging that's been coming out from Washington.

And, you know, just an example of that is there's been talk about an autism registry that's come up.

We've been getting a lot of parents calling in with concerns about whether they'll end up on that autism registry.

And also, we're starting to see people who are making the decision to forgo care.

So they're not getting a diagnosis that they may otherwise get because out of fear.

And I think that that's where, you know, within the research world, we know that early intensive intervention is one of the best indicators of success and improvement throughout life.

So if messaging like that is really getting in the way of seeing a child developed to their fullest potential, that's a concern clinically.

Yeah.

And just in terms of the registry, my understanding of where things are now is that first came up because RFK met with Doctor Jay Bhattacharya, who was the head of the NIH now.

And Bhattacharya, in a meeting with the NIH board, said, we're going look into creating an autism registry.

NIH and HHS staff both have come out in the last few days, have walked back and said, we're not doing a registry just so in case people are hearing that.

My understanding is right now that's off the books, I can't speak for next week or next month.

I know things change pretty quickly in this administration.

My understanding is right now that is not planned here.

One other point before I get to some listener feedback here, I do want to ask you, Jerry, a little bit about what I was reading, in a piece in Newsweek.

So Mark Kendall is a parent who defended Kennedy to an extent.

He's the California chair of the National Council on Severe Autism, and he wrote a piece titled I Have a Child with Severe Autism.

RFK Jr gets one thing right about it.

He writes, quote, many parents of children with severe autism like myself see things differently.

While I find Kennedy's anti-vaccine views deeply troubling, I see just as much danger from those who ignore or minimize the existence of people with severe autism, many of whom suffer from seizures.

Catterton, Ionia.

Profound communication impairments and Other issues.

Kennedy is aghast.

Critics typically did not acknowledge the daily realities of the more than 25% of the autism population, with the severe form the Secretary was referring to.

Also missing was a call for additional research to alleviate dangers such as self-injurious behaviors, or for more societal help with providing the lifetime 24/7 support those with severe autism typically need.

This is a form of disability denial, a growing movement promoting the notion that autism is simply a way of being.

This worldview of taking to the extreme attributes any difficulties people with autism face purely to the way society is set up instead of to the disability itself, and downplays or dismisses problems that don't fit within its framework.

End quote.

What do you think?

So every time you said the word severe, it feel like a stab to my heart.

My son is not severe.

My son has.

And I know you didn't mean that.

You're just reading.

You just read.

I have to tell you, Jerry, I didn't.

I felt I don't I'm trying to use terminology.

That is correct.

There's so much and and and kind.

Well, so autism.

Autism speaks split from the autism Science Foundation over the verbiage that they use for that very reason.

So I tend to use classic autism to describe my son, because I don't like the word severe to describe who he is as a human being.

Jared is not severe.

And so that is a word that has weight behind it.

So I personally do not like that use I know that, they used to have the, the phrase Asperger's, but we took that away for lots of historical reasons.

I actually found it helpful back then, before I knew the historical negativity surrounding, you know, the connotations, because it told me that maybe there are some people that could I could let them walk to the store by themselves.

I would never let my son Jared, walk to the store by himself.

When I was first, into the world of autism, I used to be frustrated when I would go to some of the parents groups.

It was called Unifi.

I think before it was autism up in heaven.

You actually hear me on the show that many years ago, and I remember talking to one of the parents here, and they were describing how hard it was for their child to walk to school by themselves.

And I was like, walk to school by themselves.

What are they talking about?

And then I felt resentful that the funding, which was limited, was going to people that could walk to school.

And now I get it.

I have been educated.

I have learned that even though their, challenges are different than my son's, they they're not any less legitimate.

So I think that, you know, there's a lot of different, perspectives here, even within autism up I every time I log in, I get upset by something someone thinks because we're all parents, just trying to figure this out.

And I don't want to make it political.

I want to make it less harmful to my son and people like Dylan.

I want to make it equitable.

But I also want to be able to have my voice heard because my my son Jared cannot speak for himself.

And I hope that we can continue.

including you've said before nothing about us without us.

And I so appreciate the fact that you do that.

but even within the autism community, we still haven't landed on the right terminology.

Well, and so let me ask Doctor Silverman a little bit about when you see a parent, like Kendall, who writes that piece for, for Newsweek saying, you know, I, I hit my son has he uses the term severe autism and he's worried that there is kind of a, an erasure or an ignoring of the challenge.

What do you make of that?

Yeah, I would say there is a it is a spectrum and kids range, and adults range, from the kind of child that you described, and what you read all the way, to someone like Dylan, who we have today here.

And, I think clinically, when you diagnosed with someone with autism within the system we have now, the way that we talk about it isn't necessarily severity, it's levels of support.

so there are three levels of support that are kind of designated.

And we really think more broadly about the person in front of us and what their needs are in the moment.

And that level of support may also change over time, but in response to, you know what you just asked, I do think that there is a more silent minority of people with autism who need a lot more support, and they're not always as, apparent, especially around policy, around programing.

they have higher needs.

And I do think that there should be more of a focus on them as well.

So after we take our only break, and this is going to be the only break of the hour, I'll work on some feedback from listeners as we talk about, autism.

what people with autism need, what the research community is working on, and maybe how that contrasts in a way, with what literally national leadership from HHS has been saying for the last month about it and why in some ways, that makes things more difficult, both for researchers, and for individuals and families.

So we'll come right back with our guests.

You just heard Doctor Laura Silverman, who is an associate professor and clinical child psychologist in the Division of Developmental and Behavioral Pediatrics at the University of Rochester Medical Center.

Dillon Taylor is here who's an autistic self-advocate.

Jerilyn sparks is a mom, a proud mom of a son who's 27 now.

and her son, Jared, has classic autism.

And she's talking about that, the family, and her experience as well.

Your feedback on the other side of this break.

I'm Evan Dawson Monday and the next connections.

We are talking about President Trump's executive order seeking to defund NPR and the Corporation for Public Broadcasting.

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More at two Point Capital Aecom something Jerry said right before we came back.

I just want to touch on and ask Gerry and Dylan about, and then I'm going to read some of your your emails.

you know, Dylan told you a little bit about how sometimes communication and understanding social cues, can be a challenge for you, and you're really self-aware about it.

And I know you work on it for for Jared.

Jerry, son Jared doesn't speak for himself.

But Jerry, just reading your posts over the years, I mean, he communicates in pretty interesting ways that you certainly know him better.

But in general, I just want you to tell the audience a little bit what it's like when someone who you love and care about is struggling to be understood.

So, so Jared couldn't speak until he was four and a half years old, and he had little utterances before that.

So I think maybe like one word phrases, but he couldn't put sentences together.

And he didn't call me mommy until he's 4.5 years old.

And I remember the day it happened, we were in the mudroom and he had Magna Doodle.

He carried it with him everywhere, and I thought it was, a fixation.

I didn't realize until that moment I drew a stick figure of, a person, and I pointed to it, and I said, and I pointed to me, I said, mommy and I did this over and over the whole day.

I was like, obsessed, you know, maybe my form of autism contribution there I was obsessed.

And by the end of the day, he had gotten the connection.

Oh, mommy is her.

And that seemed to open a floodgate for him.

And he began putting sentences together.

But he cannot speak in terms of, you know, like, analogies, like it would be very difficult for him to do an analogy so he can tell me if I really drill down even, you know, I don't feel well, but he doesn't like to me, doesn't feel well.

So when he has been very, very sick, we've ended up in the hospital because he cannot convey to me I have a fever or I have a stomachache.

I have a broken bone.

He cannot tell us when he has a broken bone.

He had an abscess tooth.

He didn't tell us like it is dangerous.

There's lack of, communication of the things that he feels he can't say.

I love Taylor Swift.

I want to go to the concert.

I love Tom cruise movies, you know, or every night he says, mom, can we have a history lesson?

So for things he really, really likes at that kind of, you know, the five year old I want, I want level, he is very able to do that.

And he introduces me everywhere we go to every stranger.

Hi, this is Geralyn sparks, my mom.

Do you know her so he can say stuff like that and he wants to connect, you know, really wants to connect.

But when it comes to actually advocating, he can't do that.

And it.

So what I find is when when RFK says stuff like that, what is going on?

I was going to advocate for Jared when I'm gone.

And thank God for my daughter Madison.

She's such a little warrior.

But not everybody has a, you know, a mom and a and a Madison.

You know, when my son Grant would step up, it worries me so much when we've got government policy spreading these falsehoods that actually have life and death implications.

And I mean, I mean that seriously, these are real life consequences here.

So what would you tell the Secretary of HHS if you really thought he would listen to you about what would make Jared's life better?

Come spend a day with Jared, go to strong hospital autism up.

Invite him here.

You know, I don't think he is a horrible human being.

I don't know him, but like you, I don't want to ascribe negative things to people.

I think he is very arrogant.

And the way you cure arrogance hopefully is by experience that lived experience he needs to get out of his, you know, Cape Cod bubble.

You know, he needs to come and spend some time with people in the trenches.

And I don't think that that could be an experience that you can't come away changed by.

So, Dylan, you know, your life is very different than Jared, but you talked about, you know, sometimes communication being an issue.

Do you get better with studying that?

I mean, like, do you feel like you're more capable now at picking up on cues and communicating more effectively?

Yeah.

I mean, it is a it is a I mean, I think, most autistic people who are diagnosed at a certain age, remember doing social stories, and literally having read out to you like, this is how you.

Yeah, this is how you interact.

and I think sometimes, like, you can I often joke sometimes you can tell when somebody, is still using their socials.

I can always tell when somebody's still using their social stories.

I will still fail a pragmatic language test, though, because and I, I can remember to this day the pragmatic language test that was given to me.

And the problem with the answers of my questions was they would ask me, what should this person do?

And I would say, I would do this.

I cannot process, like and necessarily process in this situation.

If I was this person, I would do this.

you can that improve with time to some, I mean, yes and no.

it will never come naturally.

Okay.

if I, if I put work into thinking about it.

Yeah, I can, I can say, to some degree what somebody else might do.

But if you're, if we're in a test situation where the expectation is, is that it's going to come in a natural way, I will I will always default back to I would do this.

Does it require more energy for you to try to figure out, oh, I'm exhausted.

At the end of the day.

Yeah, that isn't that interesting.

I mean, like just the things that, I might take for granted.

You're really putting a lot of work in, but that's going to drain you.

Yeah, yeah.

That's right.

We use social stories for Jared.

Those were extremely helpful.

Yeah, yeah.

They still use social stories sometimes.

Yeah, yeah.

I think adults can use social stories.

I think RFK needs a social story I do.

Well, let me see what Rich says in Rochester on the phone.

Hey, Rich, go ahead.

Hey, how are you doing?

Good.

Sir.

I do several things, but the first thing about RFK, my worry about RFK is this.

RFK doesn't want to live there, and he wants to be right when you want to be right, versus I want to learn, and I want to go, and I want to stand.

You will get things horribly wrong.

Another thing is, you have said several times, I don't want to make this political, but it's already political.

These these are the things we can't avoid.

We got to stop saying we don't want to make him political, and we have to deal with it at a political level.

You know, this this is the bottom line.

We can't we can't avoid that.

And if we keep staying, we won't.

We don't want to make this political.

I don't know where we go.

We're not going to get anywhere.

This these are, unfortunately, these are the the hard realities that we have to deal with.

Rich, I think you're familiar with this stuff.

I think you're framing is really smart in that you point out there's a difference between wanting to learn and wanting to be right.

And one of the reasons that when we talked about the recent Canadian election yesterday, one of the reasons that I pulled the sound that I did from Prime Minister Carney's Monday night election victory speech I pulled is about humility, and he talked about how wrong he is going to be and how often wrong he is.

He's the recently elected prime minister of a country, not a state, a country, a state.

Dillon Taylor, say that was for you.

Don't know for all that education minister, not a governor.

But I mean, it was pretty remarkable to hear someone say, I'm going to be wrong and I'm going to learn.

And modern team sport, politics.

And our guests have a lot of experience in Gerry talking about her family.

Gerry is off and on talking about have many a congressional press secretary, and you've been in the trenches with people who are addicted to being right, no matter the circumstance.

That is so true.

And when that becomes a calculus not just for politics, but for health, for research, for whether you vaccinate, for how we describe human beings, for whether we fund support services.

And you have to be right, doesn't matter what what the evidence tells you, that's a different level of danger.

And I think Rich's point is a really good one.

And so when I say I don't want it to be political, that's kind of what I mean, which is that I think politics has pushed us in this direction where people have to their team must be right.

You can't do what Mark Carney said.

You can't say I was wrong.

We're going to learn from this because then they all say, gotcha.

See, this guy's not trustable.

This woman is wrong all the time.

And that's not a healthy place to be.

I want to be able to be wrong.

I'm wrong all the time.

All the time.

But I think there's a social cost and a political cost in this arena to being wrong.

And I don't think that's healthy.

And that's what I mean when I say I want to get the politics out and just say, what does the research tell us?

What does Doctor Silverman know?

Like what are your colleagues telling us?

What's the latest study show?

But then I then here's what happens.

Here's an email from where was Tim's?

Tim emailed to say.

Why are you ignoring studies that link autism to vaccines?

I'm not ignoring studies, Tim.

I promise you I'm not.

If there's a brand new study tomorrow that was like, whoa, we were wrong.

We've got it.

I would you want to know that Doctor Silverman?

Of course, even even if it contradicted our previous understandings.

I think that's how scientific progress happens.

Yes.

But let me say this.

So if vaccines were to be found in a study that calls it, how do you explain all the people back in 350 BCE, how do you explain people in the wild Boy in the French Woods?

I forgot his name.

But in the 17 or 18 hundreds, there are people with autism.

We just didn't call it that.

Back then.

There were no vaccines.

So that's what I would always say.

Correlation is not causation.

But to be clear, I'm going to let Doctor Silverman respond to Tim's email.

I promise you, Sarah and I are not trying to ignore studies.

No, I would want to know every piece of data.

And there has been a lot of study about this.

Doctor Silverman, you want to just explain to.

I'm not trying to condescend here.

No, I, I think that the scientific community feels like there has been ample evidence showing that there's not a link between vaccines and autism, and these are not small studies.

So there have been large population based studies in European countries where there is population based medicine.

So they have thousands of people who have been vaccinated and not vaccinated, and they can look at the rates of autism across those cohorts of people, and they can see that there's no difference in the rates of autism.

And so it's not just one study.

There's a whole body of literature.

So I think that people feel fairly confident about that at this point.

Would you want to know, Dylan?

I would want to know, but I don't know.

I mean, here's here's the thing that I would like to point out.

Yeah.

and I often think about this is, is the reminder, like, I would rather be vaccinated for measles, mumps and rubella even if there actually was a risk, which there is not a risk of becoming autistic.

The research is pretty borne out on this.

I would rather have the chance of not dying than the chance of not being autistic.

I think that it's it's it is the language that that RFK Jr has pushed, that it is worse off to be dad than it is, or it's worse off to be autistic than it is to be dad.

And it's, you know, it is it's it's it's horrible.

I mean, you do internalize that.

I mean, Jerry Sutton internalizes it one way.

I think about it often.

Another way.

but like now, it went from being this outside flamethrower to somebody inside the government who is who is saying this?

And it's it's I think when you have people who are worried about an autism registry, about what the government is doing and what the government is funding, it's because they are now using a language that is dehumanizing for autistic people.

so let me read Nina, she says.

Another issue that concerns me is I'm a psychiatric nurse practitioner who's been evaluating and treating psychiatric disorders for decades of late.

I've had numerous requests for autism assessments in my patients and in new referrals.

People are very disappointed when I explain that is a specialty area and not part of my training.

I was glad to hear your introduction today identifying that autism requires observation and trained practitioners who have studied the research.

So my concern is that we might see a proliferation of practitioners who may add to the confusion by offering new diagnoses to people who might want quicker answers.

Can your experts today speak to the diagnostic process?

That's from Nina.

Yeah, I can speak to the diagnostic process.

So in general, there are a subset of specialists who can diagnose autism.

So those are developmental behavioral pediatricians psychologists, neurologists, psychiatrists.

For the most part they have specialized training.

And what autism is along with other conditions.

And generally, anyone can refer.

So a pediatrician, for example, if there's a concern, can refer to a specialist who can go through the process of figuring out whether someone has autism or not.

And although it often involves 1 or 2 visit, there is a ton of information that's collected ahead of time so that we can get a really nice kind of larger view of the child, including information from the school, parents and others who interface with that child.

Do you share it?

Nina's concern that we might see a desire for more, quicker answers.

Yeah.

I mean, I think that nationally there's a shortage of professionals who are specialized to give an autism diagnosis, and there are really long waitlists.

I think in addition, a lot of people now, get their make their health care decisions based on what they see on social media and TikTok.

And there's a lot of information that hasn't necessarily even been vetted.

so people have concerns where they might not have before.

I would hope that people will practice within their scope of practice and say just what your caller said, which is I recognize your concern, but this isn't within my scope of practice.

Let me help you find someone I want to endorse.

Jerry's idea of bringing RFK here.

Should we?

We should interview him right here.

Yeah.

What would you ask him?

Oh, I guess I would.

I would ask him why.

It's why he has such a hard time with perspective taking.

And I would ask that from anyone.

Anyone who is determined to be right rather than, you know, working towards, you know, creating a, you know, a way forward.

I think your point about Prime Minister Carney's, comments earlier this week is well taken, because that should not be a minority opinion.

That should not be so extraordinary that we're remarking on it now, that humility, that willingness to evolve and follow science or follow, you know, whatever you need to change your, your mind.

We've gotten the, the idea over the past probably 20 some odd years that that changing your mind is a bad thing.

Right?

Right.

and so I would I would want to I would want to say like, you know what, what what is your concern and how can we talk through this?

Let's do that together.

Let's do it now.

We're not gonna word that again.

I'm here.

He's invited.

You're all welcome to join us.

Let's have a round table and let's try to do it.

I think, respectfully, we're going to put that request out.

Yeah.

I don't think it says no.

but I want to thank our guests for being here.

By the way, it's not just Mark Carney that Canada Canada's doing, like his humility that I think Canada as well.

Pierre Poilievre three months ago was going to be the prime minister.

He loses.

Yeah, he was pure class on election night.

If you watch a speech.

Pure class.

Way to go, Canada.

Good week for, Thank you.

Jerilyn sparks.

Great seeing you.

Thank you for having me, Dylan Taylor, thanks for sharing your story and good to see you again.

Doctor Silverman, thank you for being here.

Thank you and great working with you, Sarah.

You as well of it.

Thank you very much from all of us at XXI.

Have a lovely weekend.

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