Autism Spectrum Disorder is a developmental disorder that is frequently mentioned but poorly understood. This episode's guest, Dr. Laura Arnstein Carpenter, specializes in Autism Spectrum Disorder and has much to offer us in understanding and clarifying this disease.

Dr. Carpenter is a professor in the College of Medicine Department of Pediatrics. She received her PHD from Binghamton University and completed her residency and fellowship at the Medical University of South Carolina.

♪

Hello everyone and welcome

to the Medical University of South Carolina,

Science Never Sleeps Podcast.

Our conversation today focuses on a developmental disorder

that is frequently mentioned but poorly understood,

autism.

Or more appropriately,

Autism Spectrum Disorder, ASD.

Fortunately, our guest, Dr. Laura Arnstein Carpenter,

specializes in Autism Spectrum Disorder

and has much to offer us in understanding

and clarifying this disease.

Dr. Carpenter is a professor in the College of Medicine

Department of Pediatrics.

She received her PHD from Binghamton University

and completed her residency and fellowship here

at the Medical University of South Carolina.

-Welcome, Dr. Carpenter. -Thank you for having me.

Our pleasure.

I would imagine any parent who is told

their child has autism would feel the world

has turned upside down.

So let's see if we can diminish some anxieties

and dispel some rumors.

As someone with quite a bit of clinical and research expertise

on this matter, how would you define

Autism Spectrum Disorder?

And how prevalent is it?

So we know that about one in fifty-four kids has autism.

But it's four times more common in boys than girls.

So there are many more boys on the spectrum

than there are girls.

Autism is comprised of two sets of symptoms.

So we have problems with social communication

and then unusual behaviors,

restricted or repetitive behaviors.

So the social communication problems

really run the whole gamut.

From not being interested in other people,

not being aware of other people.

To the other extreme of being very interested

in other people but just not having the skills necessary

in order to interact and then the restrictive

repetitive behaviors can be anything

from unusual motor movements,

obsessive interest, sensory differences

or behavioral rigidity.

That causes a lot of problems for people on the spectrum.

That's a wide variety of symptoms.

That's really quite interesting.

Why are boys more susceptible to it, if you will?

So we think that there are some biological protective factors

along with some social factors.

So from a biological perspective,

we know that girls on the spectrum

have more family members with autistic features.

They're more likely to have genetic changes

associated with autism

and they're typically more impaired

than boys on the spectrum.

So that tells us that there may be some

biological protective factors

where girls have to have more risk factors

in order to develop autism.

I also think, you know,

that there are some social factors involved.

When someone sees a girl that's obsessed

with Disney princesses, they might not immediately think

autism but when they see a boy

that's obsessed with trains,

maybe one of their first thoughts in autism.

I think people have a tendency

to think of little girls as shy

rather than maybe truly disinterested

in social interaction or lacking in social skills.

And then finally, I also think there are problems

with our diagnostic test.

So if you know that, you know,

there are four times as many boys with autism as girls

then you have to think that our diagnostic tests were normed

-mostly on boys. -Oh wow, yeah.

And so they're really looking for boy symptoms.

So I think there are some, you know,

underidentification of girls

along with the truth that girls

just don't develop autism at the rate that boys do.

That is--that's fascinating.

I had no idea.

I have heard many theories on the cause of ASD.

You see it in social media.

You just hear it from the lay audience.

You hear it from parents.

Everything from vaccines to the age of parents to genetics

are causes for autism.

What are the common misconceptions

and what does your research indicate?

So first of all, there has been millions and millions of dollars

spent looking at this vaccine autism connection

and there really is no connection

between autism and vaccines.

What you're seeing is our brains tend to look for patterns.

So we tend to give our babies a lot of vaccines

around 18 months and that's when symptoms of autism

first become apparent.

So of course you're going to see this, like,

correlation between giving your baby a vaccine

and your baby developing symptoms of autism.

Even if it's not causal.

We know that autism is caused by a variety of genetic factors

and environmental factors.

We have a much better understanding

of the genetic side than the environmental side.

So from a genetic standpoint,

there are more than 150 single-gene changes

that seem to be associated with autism.

One-hundred-and-fifty--

say that again please.

There are more than 150 single-gene changes

that are associated with autism.

More than 20, what we call, copy number variants

associated with autism.

But the amazing part is that we think

that there are 100 more to still be discovered.

The truth is that most scientists at this point

think that we're not just looking at one autism.

We're looking at multiple autisms.

And that there are many different pathways to autism

and if we can kind of figure out

which pathway a specific child took

than we could do a better job of matching

a treatment to their type of autism.

Is that almost like--just to clarify in my mind,

is that almost like there is the big word cancer

but then there are many cancers

and they all have different treatment options

and they have different causes.

Yeah so it's the same idea as like a precision medicine

or like a personalized medicine.

Right now, when I make a diagnosis of autism

in a two year old, I'm pretty much making

the same recommendations for every single child.

With you know, some small variations.

We know that not all the treatments work

for every child but we don't know which kids

which treatments are going to work for.

If we can figure out all of those different

genetic pathways then I think we could do a much better job

of supporting kids and supporting families.

So the other side of things, that's the genetic side,

the other side is the environmental side.

We know that there are both genetic

and environmental factors

because we have identical twins

who are, what we call, discorded for autism.

Meaning that one has autism and the other doesn't.

It's very rare.

These are babies with the same genetics

who are coming out with quite different,

you know, what we call phenotypes presentations.

So we think in those cases

that there are some sort of environmental causes going on

that, you know, potentially change the expression of genes.

So some of the things that we know for sure

are that older parents and particularly older dads

have a much higher risk of having a child with autism.

We know that being born early confers

a risk of having autism.

So being a pre-me.

But there are so many other risk factors

that we don't understand.

Like what could cause those genetic changes

in the environment and what we even mean by environment.

Do we mean smog or pollution.

And/or do we mean epigenetic effects.

So things that have happened maybe to your mother

or to your grandmother and now are being passed down

across generations.

Who does that kind of research?

Is it a neurologist?

Is it a ped--who's doing that kind of research

into what's happening physically?

So it depends on, you know, what level.

So when you're talking about these really big

environmental studies, you've got to have epidemiologists

on board because they understand

how to look at research, you know,

across large numbers of people.

When you're talking about this genetic research

you have to have people with expertise in genetics

who can look at a genome and identify

where the changes are happening

and then see those changes

across lots of different kids.

What is the long term prognosis for adults with autism?

So I think we've all heard about adults

that have had really good outcomes.

Like, you know, you think of these really famous guys,

like tech guys that have had these amazing careers

and have contributed so much.

I think in those cases what's happened

is that those intense interests that we see in autism,

that hyper focused or sticky attention

has really been channeled in the right direction, right.

These folks have learned, you know,

have really focused on a particular career path,

maybe they think a little bit differently,

they think outside the box so they're able to see things

the rest of us don't see.

But the truth is that a lot of my patients

are still really struggling in adulthood.

So you know, it's not that their symptoms get worse overtime.

In fact, most people with autism are continually

making improvements, they're learning social skills,

their symptoms are not getting worse

but what's changing are the environmental demands, right.

So when you're a third grader

people don't expect as much from you

in terms of like complex social interactions,

as they do when you're a college graduate in the workforce.

So right now I think, you know,

along the way in school we're not doing enough

to help kids learn those soft skills,

those social skills that they need to have

in order to be successful

10, 15 years down the road

when they enter the workforce.

So even my patients that are graduating successfully

from high school, graduating successfully from college

it's kind of like a now what? You know?

They get a job or they're not able to get a job

or they do get a job and they can't maintain that job.

Certainly, there are some innovative programs out there

to try to support those kids.

But it's not nearly enough

and you see a lot of people on the spectrum

who are either completely unemployed

or dramatically under employed.

So we're talking about a person with a bachelor's degree

in computer science who's stoking shelves at Walmart.

-You know? -Yeah, that's really tough.

And I think, you know, especially in adults

we also have this problem of underidentification, right.

Because 20 years ago we thought of autism

as this very narrow disorder

where kids were extremely impaired

and had these very specific sets of characteristics.

Now we're doing a much better job

of picking up autism in a range of people.

So kids who are extremely bright, gifted,

but still have social problems and unusual behaviors.

And then kids at the other end

who have pretty significant cognitive delays.

I think in the past, those delays

would've overshadowed the symptoms of autism.

Now we're recognizing autism in those folks as well.

But if you're talking about you know,

people in their 20s, 30s and beyond

the chances that they would've gotten a diagnosis as a kid

-is very low. -Wow.

So that makes it even harder to get support services.

If you've never even been diagnosed.

There's not a lot of people out there

who do adult diagnoses.

So I think there's multiple facets to this crisis.

The fact that there's not support available,

particularly for people who don't have

intellectual disabilities, right.

If you have an intellectual disability

there's a whole system that can help you get jobs

and get supported employment.

If you don't have an intellectual disability

the systems of care aren't there.

Then you don't have a diagnosis.

You're certainly not going to get access.

You might not even know that you don't have a diagnosis.

So something else is going on.

Perhaps you've been told your whole life that,

you know, you're just a bad person.

Or that you don't try hard enough.

So when teens and adults gets a diagnosis for the first time

usually their response is incredible relief.

I would imagine.

I would absolutely imagine.

How do you go about diagnosing?

So let's start at the point of first concern

you want to go talk to your pediatrician.

They're always going to be your first contact.

Your pediatrician should be able to get you

to a provider who can do further evaluation.

If this is a very young child

you do not want to wait to get a diagnosis

in order to start treatment, right.

So some of our waitlists are six months,

12 months long, so you don't want your child

just sitting around not getting help during that time.

So in South Carolina

you can refer--anybody can refer a child under three

to a program called Baby Net.

Where kids can get free, early intervention

without a diagnosis.

And then if the child is over three

they can get referred to their local school district

and we have special education teachers and therapists

who are trained to help kids with autism.

Again, you don't need a diagnosis necessarily

in order to get services through that school district.

So while you're waiting to get the official diagnosis

you can be getting started on getting help.

Once a child comes to, let's say, MUSC

to Developmental Behavioral Pediatrics for an evaluation

we're going to do a number of things

So first of all, we want to do a physical exam.

We want to rule out

are there other things going on

that might be contributing?

Can this child hear?

And then from there we're going to want to do

some structured behavioral observations.

So how does the child play?

How do they interact with us?

How do they share their attention and their enjoyment?

We have some specific tests that look at those skills.

We also look at where they're at developmentally.

So if a child is extremely delayed

perhaps it's not autism

but just kind of a global developmental delay.

Maybe it's just a language delay.

I mean, we want to make sure that we're ruling out

anything else that can be doing on

and potentially masquerading as autism.

In older kids I think it's really important

to get to a specialist who has expertise

in how autism presents in older kids.

If it's, you know, sort of your first diagnosis.

In older kids, you know, if it's a first time diagnosis

for a teenager or for an adult

you really want to make sure you're seeing a specialist

who knows how autism presents in teens and adults.

That's particularly true if you're talking about

a teenage woman, a teen girl or an adult woman

because a lot of people just haven't had that experience.

What you're looking for in a child

is going to be very different than what you're looking for

in like a teenager or an adult.

So that might be a different skill set.

Okay, that's good to know.

I do know, I have some friends

who have an autistic child

and I think he's almost 30 now.

But back in the day, they couldn't identify

what his problem was so they never had access

to the resources they needed or the funding, government funding

to help in certain matters.

Finally, finally they got that.

It's kind of a tragic situation.

So what you're suggesting is really important for folks.

The moment they think there's any kind of issue,

go ahead and get all the testing and evaluation that you can.

It's, you know, it's definitely worth it.

Yeah, we've gotten to the point where

the autism diagnosis is kind of a very high stakes diagnosis.

A lot of people who come to me for an evaluation

are absolutely seeking a diagnosis

because they know there's something going on

with their child and they want help.

Sometimes if you don't get the diagnosis

then no help is available.

Which you know, shouldn't be the way our system works, right.

Every child should be able to get the help that they need

but unfortunately, we've designed this medical system

where you have to have a very specific diagnosis

in order for your child to get certain therapies.

So it's become a very high stakes situation.

I can imagine.

What are some of the earlier signs

that your child might be at risk for autism?

So what's really interesting,

we have this whole area of research

where they have followed kids at three months,

six months, nine months, twelve months

and looked at what some of the earliest symptoms

of autism might be

and tried to figure out what distinguishes

those kids who go on to develop autism

from those who don't.

What's really interesting is that there doesn't seem

to be any reliable indicators, at least behavioral indicators,

prior to 12 months of who's going to go on

to develop autism.

So it's really hard.

At this point, we cannot make a diagnosis of autism

in a six or nine month old baby.

Maybe someday we'll be able to, I hope so

cause I think that would change a lot of things.

At this point, where you really start to see

those trajectories divide

is around 15 or 16 months.

At that point, a lot of what you're looking for

is social interaction.

So your 15 or 16 month old baby

should be looking at you with warm, joyful expressions,

making eye contact, imitating facial expressions.

Even if the baby's not talking yet.

We're also looking for gesturing.

So we don't focus so much on language anymore

because lots of kids are delayed in speech.

Kids develop speech at all different times

and I think if you just focus on language

you capture too big of a group

of people to be concerned about.

But even kids who are delayed in speech

usually use gestures appropriately

and actions with objects.

When I say gestures I mean things like blowing a kiss,

waving, saying "Shh"

and pointing seems to be particularly important.

When you want to point something out to your child,

when you want to share your attention

and you point at something

they should look at what you're looking at

by about 15 or 16 months

and then they should also start to share their interest

with you in the same way.

So pointing at things they want

or pointing at things that they're interested in.

So if your baby's not pointing at 15 or 16 months,

if they're not looking you in the face,

if they're not following your point,

if they're not responding to their name,

those are all huge red flags for autism.

It doesn't mean it's necessarily autism.

There's lots of things that we want to look at and evaluate.

But certainly reason to go talk to your pediatrician.

We do ask that all pediatricians

screen for autism at the 18 and 24 month visit.

So that's supposed to be part of the normal well child visit.

The reason we do it twice is because there does seem to be

this percentage of kids, it's about 20 percent of kids,

who go on to develop autism

who seem to develop pretty typically up until 18 months

and then start to actually lose social skills...

-Wow. -...between 18 and 24 months.

So if you only screen at--

you want to screen at 18 months

cause you want to pick kids up early.

But if you only do it then you're going to miss some kids

who lose those skills.

It's very rare for kids to lose skills after 24 to 30 months.

So there are cases where it happens.

I don't think--I think there are probably

other things going on.

It's very rare so I don't want parents

to sit around thinking "My child's going to suddenly

disintegrate in front of me." That's pretty rare.

If it's going to happen it's usually

between 18 and 24 months.

Another piece of research that just came out

in the last couple of years that I think is fascinating

is they have this cohort of children

that were followed very closely from infancy.

They found that there are kids that did not meet

criteria for autism at three

who did go on to meet criteria for autism at age eight.

So it does seem like there are some kids

whose symptoms are so subtle

that even when they're evaluated by the greatest experts

in the world, those are the people doing this study,

they were still missed at three

and then picked up later.

So what I'm seeing now is a lot of kids

who are getting maybe psychiatric care

and someone says, "Do you think this child might have autism?"

And people say, "Oh no, no we already ruled it out.

He already had an autism evaluation."

But I think it's really important to circle back

and perhaps, you know, consider

whether it might be autism

even if it's a few years down the line.

Does that suggest that if it is autism down the line

that it's a very subtle form of it?

Or does it come on pretty-- can it come on

pretty strongly in between?

I think in those cases it's usually a more subtle form.

Like I mentioned earlier, so much of impairment

is dictated by our environment.

So like I have terrible handwriting.

If I was forced to handwrite all my research reports

I would be incredibly functionally impaired.

You know, I can type everything.

So my functional impairment, nobody even sees it.

That's the same case with autism.

If the environment is supportive

and sometimes those impairments just aren't even there

but it's when the child gets to a transition.

They go to middle school, they go to high school.

A lot of times when they go to college

and they're on their own for the first time

and we realize how much scaffolding has been provided

by the school or the parents.

That we're like "Oh my goodness, there is something

going on here."

That's an excellent point.

If you have a child that was evaluated

and have some form of autism,

as a parent, what would you suggest

would be the ideal environment

to support them on this journey?

So for little kids,

most little kids with autism are going to benefit

from intensive one-on-one intervention.

That's going to include speech therapy,

occupational therapy and something called

applied behavior analysis therapy or ABA.

We know that if you look at the broad literature

the kids that do the best are those who their treatment

started early and they got a lot of hours

of one-on-one quality treatment.

That's not to say if your child doesn't get diagnosed

till later there's no hope

but on the other hand, we know that the brain

is more plastic earlier in life.

So if we can get those treatments started earlier

I think it's much better and those are the kids

that seem to have the best outcomes.

As kids get older, we're going to be focusing on

different things.

A lot of times our treatments focus on

some of the comorbidities that go on with autism.

We see a lot of depression, anxiety,

disordered eating.

You know, social skill deficits in older kids.

That tends to be the focus of treatment as kids get older.

We found that cognitive behavior therapy,

which I'm sure everybody has heard about

for anxiety and depression,

we found it works incredibly well for kids with autism

who also have anxiety and depression.

We also know that there are some social skills interventions

that can work really, really well

in helping kids sort of make progress in social skills.

We have a lot of medicines now

that are very good at helping

some of the, kind of, associated features of autism.

Whether it's temper tantrums,

irritability, attention problems,

hyperactivity, sleep problems,

we have medicines that are really good

for helping those areas of concern.

Unfortunately, we don't have many medicines

that treat the core symptoms of autism.

I was going to ask you about that.

Yeah, is there a pharmacology that can be used.

So there's a lot of research going on

in trying to find something that will help kids, you know,

help improve social skills.

So far, nothing has been great.

There's been a lot of hope

and then, you know, a lot of kind of failures.

But I think it might be out there.

I think folks are continuing to look.

One of the debates that's come up in the field recently

is whether or not you actually treat those

restricted repetitive behaviors.

So I think everyone can agree

that treating social skills probably makes sense.

You know, the treatment of those restrictive repetitive behaviors

do we want to decrease hand flapping

and what difference does it make.

Do we want to treat intense interest.

Is that going to make a difference in the child's life.

I think it really comes down to functional impairment, right.

If it's a symptom that's getting in the way for the child

then we want to give them relief.

If something that is uncomfortable for them

that they don't like.

On the other hand, you know,

we've moved away from treating symptoms

just because they make the child look different

than anybody else.

Hand flapping is a great example.

Unless it's something that's so dramatic

that it's getting in the way, which I can't even think

if I've ever seen a case like that.

We're not addressing hand flapping directly.

Often it's either a way for the person

to express excitement or a coping mechanism.

So to take that away from them

probably isn't helpful.

We're starting to look at these symptoms differently

and think about what do we really want to treat here.

Eye contact is another one that's real controversial.

Like, should we be forcing kids to make eye contact

if that's something that doesn't come naturally to them

or is maybe painful for them.

I think there's a lot of people who would argue

that teaching children to make eye contact

is really for the benefit of everybody else,

and not for the benefit of that particular child.

I think as a parent you hear what the expert says,

but you're saying, "Yes, but my kid,

socially everybody makes fun of him,"

or something, and so their natural inclination

is probably to protect,

or to insist on certain things.

So, how do you talk to a parent like that

who probably already feels some guilt.

"My child has autism, what do I do?

How did I make that happen?"

Until they understand better what the disease is about,

how do you help a parent cope with that?

When you're saying, "Hey, this is a comfort to him

to flap his hands," and the parent's going,

"But, it makes him look socially awkward,

and people make fun of him,

and then make judgments about him."

-So, how do you deal with that? -Yeah, I think

parents are at different points

on their journey with autism, right?

Like a lot of times when parents come in

with their 18 or 24-month-old baby,

they're ready for that baby to be fixed.

-Yeah. -"I want this to be over,

and can you tell me exactly how long it's going to be

until this whole autism thing is done?"

By the time you get up to 5 or 6,

you're at a very different point.

Now you've had a chance to see your child's strengths

and what makes them unique, and sometimes there are things

that you don't want to change about your child,

because you've realized that this is like--

these things are gifts for them.

So, I think people are at very different points

kind of on their journey.

The point where I see parents getting really anxious

is around the transition to middle school.

So, I think, up until middle school,

kids are very tolerant of other kids' differences.

Sometimes they don't even notice.

I'm always amazed with what my own children

didn't notice when they were in preschool,

or kindergarten, or early elementary school.

They're just other kids to them.

Now that we mainstream so many kids with disabilities,

there are so many kids that are different

in so many wonderful, unique ways

already in the classroom.

Things tend to shift a little bit at middle school,

and that's if you're going to see bullying,

that tends to be where you start to see it,

and so as parents approach that transition to middle school,

there's a lot of anxiety, like, "Oh, my gosh,

we still have all these difficulties."

Like, "Well, how are we going to support our child

and sort of make things better?"

So, I think you kind of have to target your conversation

to where the parent is and what their goals are

-for their child. -That makes absolute sense.

Does MUSC have any kind of program

where you consult for the educational system?

It's really tricky, so you know,

the public education system

is at a point where they can't allow

external people to come in, because we haven't

gone through their vetting,

which is very similar to how MUSC is.

It's not like we can just bring in anybody off the street

and have them observe us, or kind of consult with us.

They would have to go through our vetting process.

So, it's true in both settings,

but I used to do a lot more in-school observations,

and attending IEP meetings, and that's become a lot harder,

because schools have kind of tightened up their policies

-for very reasonable reasons. -Yeah, sure.

But, I think what's happened,

partly because of that,

is that children's therapeutic programs

have become very fragmented.

So, you have your speech therapist

who's working with the child outside of school,

and the speech therapist who's working with the child

inside of school, and then you have

their ABA therapist who's working with a child

outside of school, and none of these folks

are necessarily talking to each other.

I have definitely seen cases where one therapist

is working really hard on signs,

and another therapist is working really hard

on some other augmentative communication system,

like an iPad, and the parents have no idea

how the iPad works because they've never

been shown how the child works on it.

So, everybody is doing something different,

and when you're talking about a child

who already has difficulty learning, right,

we know that this child takes longer to learn,

we need to be more thoughtful about their time,

and make sure that we're all coordinating.

If we're going to use signs, we all need to know

the signs, the sign language that that child is using...

-Right. -...so that

we're being respectful of the time that they have

in therapy.

So, I think there are lots of protections in place

for people's privacy, both in the hospital setting,

and the educational setting, and the therapeutic setting,

but sometimes that gets in the way.

-Sure. -There's also not

insurance funding for folks to collaborate with each other.

Oh, wow, I didn't even think about that.

What insurance is going to pay

for me to sit around with the school,

to sit around with the private therapist,

and all come together, and come up with

a sort of cohesive treatment program

-for a child? -Makes sense, yeah.

How do teachers manage it then?

I mean, I know that they--

I actually have a friend who specializes in autism,

teaching autistic children.

Would you know whether that's a curriculum,

a program of study that that teacher went through

that's pretty standardized across the country,

or how does that work so that each child

is ensured to get that kind of support at school?

So, I think it's hugely variable, right?

So, if a teacher who's being trained now

I would guess get a lot more instruction,

even if they're going through

regular early childhood education programs,

they're going to get a lot more instruction

in how to work with kids with disabilities,

because they're going to be in their classes.

-Right. -You're going to have kids

with down Down syndrome, and ADHD, and autism

in those mainstream classes.

Whereas 25 years ago,

those kids simply were not in mainstream classes.

Mainstream teachers didn't need to know

how to support them, because they were in

-special education classrooms. -Right.

I think a lot of teachers are really good about going,

even if they're older and went through training

years ago, like I did,

they're really good at going

to these continuing education training programs and learning,

-because they have to, right? -Right.

Again, these kids are going to be in your class.

If you're teaching a mainstream class,

you're going to have kids with learning differences,

behavioral differences.

At this point, very few kids are shuttled away

into special education separate classrooms.

It's just not the model we're using.

Yeah, probably those that would be disruptive

or something might be shuttled out.

Yeah, it depends a lot on the district,

-and on the age of the child. -Okay.

But, really the value at this point

is bringing kids into the mainstream.

I think there's a lot of difficulties,

and a lot of challenges, but I can tell you,

the benefits that I've seen even with my own children

is the tolerance, right?

Like when I was in school, I never saw a person

with a disability, and I remember

when I would see someone who was visually impaired

or hearing impaired, it was almost scary.

-Yeah. -Right, I had no experience

with those people.

But now, those people

-are my colleagues, right? -Yeah, yeah.

We have colleagues who are visually impaired.

We have colleagues with cerebral palsy.

I have many colleagues with autism

because of what I do, I have friends with autism.

So, my perspective has changed through that exposure,

and I'm so thrilled that for my kids

that's been baked in from the beginning

of their education, and I'm not going to pretend

like there's no problems with mainstreaming kids.

There are certainly challenges,

but there are real benefits.

Absolutely, and for the autistic person,

because I can imagine if they feel a certain amount

of acceptance, that can only help them

as they move forward on that journey of autism,

and whatever treatments they're getting.

I think that's wonderful, plus the fact that

you brought up something earlier,

which I truly believe in.

So, you have people with autism that we know,

the high-tech guys I think,

and they bring something to the table

because they have this incredible brain activity

going on, it's kind of fascinating.

It's interesting, we used to think that autism

was that savantism,

which is what Dustin Hoffman has, right,

like remember how the matches fell over the floor,

and he's like, "There's 154 of them," or something.

We used to think that savantism was very common

in autism, and it's turned out that

it's no more common in autism than it is

-in the general population. -Oh, okay.

So, in the general population you do find people

who are just amazing, and can look at matches on the floor

and count how many there are.

What's more common in autism is that you have

a specific focus on something,

so if your focus is on maps,

sometimes you get a high level of achievement

in the area of geography, and knowing about maps.

Or if you're spending hours a day practicing the piano,

or drawing, of course you get much better at it.

So, there is certainly savantism in autism.

I have seen it.

But, it doesn't seem to be something specific to autism.

Okay.

Let's address another, I would think is

disinformation,

is when we have seen in the news

when some violence has occurred,

the perpetrator has been--

they've said, "Oh, they were autistic,"

or something, and I don't know how strong those diagnoses were,

or how real they were, but I know that at one point

there was discussion about people with autism

are violent.

Can you kind of dispel that, or give us at least

-a clarity on that? -So, first of all,

I think the most important statistic to note

is that people with autism are much more likely

to be the victims of crime than the perpetrators.

My team has done quite a bit of research

looking at interactions between people with autism

and the department of juvenile justice,

as well as in SLED,

the South Carolina Law Enforcement Division,

and what we found is that

people with autism don't seem to have more interactions

with those systems.

Unfortunately the other finding we have

is that once people with autism are in the system,

they are not treated any differently,

so we're not seeing a whole lot of differences

in terms of diversion,

maybe considerations for sentencing.

It's certainly possible that at the point

that the person is arrested

there may be different treatments,

different ways that the police handle

those kind of interactions for people with autism,

-versus other folks. -Yeah.

That wasn't in our data set,

that kind of very early difference.

But, once they're there in the system,

there doesn't seem to be any special consideration

for autism, and I certainly have seen that

in my own legal work.

So, when I do legal consulting,

what I'm told by the lawyers is that

you can say that a perpetrator has autism,

and a jury will say, "So what?

What difference does that make?

They still committed the crime."

So, my research

sort of lines up with what I have seen

in my own life.

I also have had patients who have been arrested

for symptoms that are clearly related to their autism.

-Oh, yeah. -So, there are

zero tolerance policies in school

for what's called sexual harassment,

and if you have a little boy

who touches a little girl,

because he doesn't understand boundaries,

or for some other reason,

maybe he's a little bit preoccupied with her.

We have had patients that have been arrested by the police

for behaviors like that,

which is not useful, right?

Like if you have someone with a skill deficit,

they do not understand personal space,

they do not understand social rules,

punishing them isn't going to change anything.

What we need to do is we need to teach them those social skills

-that they're lacking. -Right.

I don't speak Japanese.

You could punish me all day long for not speaking Japanese,

and it wouldn't teach me Japanese.

You would have to take the time to teach me

that foreign language, and the same thing goes

for kids with autism, where social norms,

social rules, the way you're supposed to behave in public.

A lot of these kids are super smart,

they will learn if you teach them,

but you have to take a teaching approach,

-and not a punitive... -Right.

...and certainly not a legal approach.

That's not going to help anybody.

So, that suggests to me that--

You've talked about having children evaluated

between 18 and 24 months,

and then maybe at 8 years old if they exhibit,

but those children

in 1st, 2nd, 3rd grade, whatever,

if it's not common to do that kind of evaluation,

how would one be able to--?

I mean, I'm trying to think of when a child

does something like that, if the teacher knows

they're autistic, you would hope that there would be standards

-in place to manage that. -Yeah.

But, it doesn't sound like there are,

I think that's what I'm trying to get to you, do you know?

I think it changes people's perspective.

So, when a child doesn't have a diagnosis,

you might think that they're being oppositional,

and so the instinct might be

to go to a much more rigid style.

Lots of time-outs, lots of consequences,

"You need to stay in a recess," versus once you understand

the child's diagnosis, you're going to go to

a much more remedial style.

Like, "Okay, when we get upset,

we don't throw the crayons across the room.

Here's what you can do."

So, kind of teaching.

I think it does move people to change their perspective.

One thing I want to say

is that we do broad screening at 18 and 24 months.

We're not necessarily looking for kids

-who are of school age. -Okay, got you.

At that point, it's really when kids start having difficulty

that they would come to clinical attention.

I don't think there's enough--

that the yield would not be big enough...

-Understood, yeah. -...to do broad screening

in school-aged children.

I think you would capture so many kids

with so many different diagnoses

at that point, right?

You would be capturing, if you did a broad screening

in any elementary school, you would be capturing

kids with ADHD, and anxiety,

and learning problems.

So, nobody's recommending

broad screening of school-aged kids.

But, we definitely want to see broad screening

-in the little kids. -Right, right.

That makes sense, that's good to know.

Do children outgrow this disease?

Is that a possibility?

That's a good question, so there have been a couple

of really important studies published,

showing that about 10 percent of kids

will no longer show observable symptoms

by the time they reach middle childhood.

So, it'll be interesting to see what happens to those kids

down the line.

Once they get to college, is it different?

But, it does seem like 10 percent of kids

have optimal outcomes.

A lot of those kids have gotten really good intervention

and supports along the way.

For the rest of the kids,

the level of support needed is highly variable.

So, there are kids who, sure, they have some symptoms

of autism, and they've got some sensory differences,

but they're pretty easy to accommodate,

and they're thriving pretty well.

There's not a lot of functional impairment

from the autism itself.

Then, we've got kids who've got pretty significant needs,

and are going to go on to need supports

probably for the rest of their lives,

and so we need to be able to plan

-for all potential outcomes. -Absolutely, absolutely.

I've heard people talk about neurodiversity.

-Can you tell us about that? -Yeah, so neurodiversity

is a movement that's been put forward

by people who have autism themselves.

They've sort of been the leaders of this movement.

The idea is that

people are different, and that we need to value

those differences, and so I think we've all

kind of come to value diversity

when we think of racial diversity,

or gender diversity,

but we haven't thought as much about neurodiversity,

and differences in the way that brains process information.

So, these advocates,

I think they've really made some important contributions

in terms of saying like, "Not everything in autism

is pathological, not everything needs to be treated.

Some of these features are just differences."

There has been a conflict

between some people in the neurodiversity movement

who feel that only people with autism

should speak for people with autism,

and parents who feel that they are obligated

to speak for their child who cannot yet speak for themselves.

I think we need to have respect on both ends.

Adults with autism are experts on their own autism,

and we need to respect that, we need to listen

to how they want to be spoken of.

So, many adults with autism

believe that autism is their identity,

so they want to be referred to as autistic adults,

not adults with autism.

On the other hand, parents are also experts

on their own children, and they know

what their children need, and we need to have respect

for them as well, and so I think right now

-there's just growing pains... -Right, right.

...and having those groups of folks listen to each other,

because they both have important things to say.

Yeah, absolutely.

We spoke very briefly about this,

but can you kind of expand on any breakthrough discoveries

in terms of treatment, either behavioral

or pharmaceutical?

Anything specific that you could share with us

that might be new on the horizon.

So,

I think that the mainstay of treatment

for small children is still that

intensive behavioral intervention.

We're looking at different models

for delivering it, so there's a lot of folks

who reasonably say that

a model of having 40 hours a week of one-on-one treatment

is not sustainable.

How are we going to pay for all of that?

Now, certainly there are people,

researchers who will look at the economics

and say, "Yes, it's very expensive

at age 2, but the lifelong savings

are well worth it."

But, in response to that, there's been some other models

that have been developed looking at group treatments.

So, one of them is the Early Start Denver Model.

They have a really nice parent training component,

a preschool component, and it's less of a focus

on that one on one, 40 hour a week

that you see in more traditional ABA.

I haven't seen a lot of Early Start Denver Model,

any Early Start Denver Model here in South Carolina yet,

but I would imagine that it's coming.

Part of the benefit is that it is something

potentially more feasible, and less expensive

to be able to deliver.

It always feels crazy to talk about cost

-when it comes to-- -Yeah, that's such a hard--

Right, like--

You're absolutely right.

I don't know where to fall on that,

I mean, I want to devote all the resources we can

-to helping young kids... -Yes.

...and not have to consider cost,

especially because we do know that

the cost savings in the long run

can be astronomical, right?

Right, and not only that, the social benefit,

the productivity, the contribution to society

is so much more enriched

when these folks have this opportunity, this chance.

COVID, how has that affected

children being treated with autism?

Is it harder to do like telehealth with them,

or even tele-education with them?

Yeah, it's been really interesting,

I mean, I think it's just like any other child.

Some of my patients have thrived with being at home,

and like we've taken away that social component.

Now, I don't know how good that is for them

in the long run, but school can be a very stressful place

for a person with autism, and so if you can learn at home,

some of my patients have been super happy.

On the other hand,

those kids with more significant needs

are not going to benefit

from telehealth type of treatment.

They're not going to be able to sit behind a computer

and listen to a teacher.

I feel like we've been pretty lucky in South Carolina

that the majority of therapists

continue to see their patients right through

-the worst of the pandemic. -That's impressive.

Our schools did a good job

of getting our kids with disabilities

back into school, which I think was the right decision,

because otherwise they would've had an entire lost year.

-Yeah. -So, I think in South Carolina,

I feel that we've actually handled the pandemic

really well for kids with disabilities.

I think where the difficulty comes in,

ah, well there's lots of difficulties,

but I've had a lot of difficulty as a diagnostician.

There's been a delay in referring kids,

and then once they come to see me,

it can be really tricky, because many kids

have not been in a structured preschool setting,

and so I'm missing this whole wealth of information

that I normally would have on kids who are coming in.

So, all I can rely on is how the child is doing at home,

and how I see them in clinic, and I'm not getting

the information from the community

that I would normally have, so I think long run,

we're probably looking at delays in identification,

-which is bad. -Yeah.

I don't know what the trickle-down effect

from that is going to be, but it has been interesting

to see the kids who have kind of thrived

-from the pandemic conditions. -Yeah, I love that.

-Yeah. -Yeah, I'm glad to hear

that there is some optimism there.

-Some silver lining. -Yeah, for sure.

So, let's discuss the research.

This is Science Never Sleeps.

Tell me about the research going on in autism.

So, we have a couple of really exciting studies

going on here at MUSC.

One is called SPARK.

This is a national study.

We are looking for

all of the genetic pathways to autism.

So, our eventual goal is to get 50,000 people with autism,

as well as both biological parents,

and sequence their DNA to understand

what is causing autism in different people

with different presentations.

South Carolina has been an incredibly successful

recruitment site.

We've been running this study

for about four years here in South Carolina.

We've had so many people participate.

It's super easy, so we collect genetic information

through saliva through spit tubes,

and we can help people participate,

but we also have a way to allow them

to participate at home, so they never have to come in

and get any exposure to COVID, or anything else

they're concerned about, so we can actually

send those spit kits right to them in their homes.

So, that's one study that I'm really excited about.

We definitely need more diversity in that study,

just like any research study needs diversity,

but particularly genetic research, right?

We need people of color, we need people

of different socioeconomic backgrounds.

So, we're looking for everybody at this point.

Then, the other studies that we're just getting started

right now, we have a number of studies

looking at using telehealth

to deliver treatment to kids

who either are low SES,

or live in rural areas

where it's hard to get access to good treatment.

-Right. -So, we're using

a treatment model called

Parent Child Interaction Therapy,

or PCIT, and the goal of this treatment

is to help parents manage behavior.

So, we're not fixing autism,

but we are helping parents with the temper tantrums,

and the defiance that you sometimes see in young kids.

So, we just wrapped one study looking at that,

and we're starting two more, looking at how to deliver

that treatment right in people's homes,

and people love it.

They love that they don't have to,

in order to get therapy, they don't have to

get in their car, drive all the way to MUSC,

find parking.

-We are there in their home... -You bring it to them, yeah.

...where they're struggling with their child.

-Right. -So, I really believe in

this treatment model, and I think it's going to be

-very successful. -Can you tell us

how those who would be interested

could learn more about these clinical trials?

Yes, please call us.

We are standing by.

and we would love to tell people more about these studies.

I hope everybody takes advantage of that.

These are wonderful opportunities

to be engaged, and to help your children,

and help your friends' children as well.

So, Dr. Carpenter, thank you so much

for your time and expertise today.

I hope this discussion provides clarity and comfort

to our listeners,

and support for those diagnosed with autism.

Ongoing research is key to treatment options and care.

Thank you so much, we really enjoyed

-having you here today. -Thank you for having me.

Absolutely, and to our listeners,

thank you for your continued enthusiastic support.

Stay tuned for next month's podcast.

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