The Peter Attia Drive - #330 – Autism, ADHD, and Anxiety: Understanding the rise in autism and a multidisciplinary approach to diagnosis and treatment of each condition in children | Trenna Sutcliffe, M.D.
Episode Date: January 6, 2025View the Show Notes Page for This Episode Become a Member to Receive Exclusive Content Sign Up to Receive Peter’s Weekly Newsletter Trenna Sutcliffe is a developmental behavioral pediatrician and... the founder and medical director of the Sutcliffe Clinic in the San Francisco Bay Area, where she partners with families to provide care for children facing behavioral challenges, developmental differences, and school struggles. In this episode, Trenna shares her journey into developmental and behavioral pediatrics, including her pioneering work at Stanford and her expertise in autism, ADHD, and anxiety—the "three As." She explores the diagnostic processes, the overlap and comorbidities of these conditions, and the importance of personalized treatment plans that address both medical and environmental factors. Trenna offers valuable insights into the changing prevalence of autism, the impact of evolving diagnostic criteria, and the range of therapies and medications available to support children and their families. She also discusses the challenges in accessing care and the critical need for a holistic approach that bridges healthcare and education. We discuss: Trenna’s passion for developmental-behavioral pediatrics (DBP), and the process of diagnosing anxiety, ADHD, and autism [3:15]; Understanding anxiety and ADHD: assessing impairment and self-esteem and identifying anxiety and emotional well-being in young patients [9:45]; The evolving diagnosis of autism: understanding the spectrum and individual needs [16:30]; The dramatic rise in autism spectrum disorder (ASD): genetics, environment, expanded diagnostic criteria, and more [25:45]; Exploring epigenetics and the potential multigenerational impact of environment exposures on susceptibility to certain disorders [37:15]; The evolution of autism classifications, and the particular challenges for children with level 1 (mild) autism due to a lack of support [41:15]; The broadening of the autism spectrum: benefits and risks of expanded diagnostic criteria and the need for future frameworks to focus on better outcomes [48:00]; The overlap between ASD, ADHD, and anxiety [57:15]; Understanding oppositional defiant disorder, and the importance of understanding the “why” behind a behavior when creating treatment plans [1:00:45]; Defining developmental-behavioral pediatrics (DBP), and Trenna’s professional journey [1:07:00]; Updated methods of ABA (applied behavioral analysis) therapy: evolution, controversies, challenges of scaling autism care, and the need for tailored interventions [1:13:45]; Advice for parents trying to find and evaluate care for children with autism, ADHD, or anxiety [1:22:45]; Tailored treatments for ADHD: balancing stimulant medications with behavioral training [1:28:30]; The interplay between medication, behavioral therapy, and neuroplasticity in managing ADHD, and the potential to grow out of the need for medication [1:39:45]; Using medication to treat anxiety and other symptoms in kids with autism without ADHD [1:44:45]; FAQs about medicating children with ADHD: benefits, side effects, dosage, and more [1:46:30]; The “superpowers” associated with level 1 autism [1:48:45]; The next steps to increase support for children with ASD, anxiety, and ADHD [1:50:45]; and More. Connect With Peter on Twitter, Instagram, Facebook and YouTube
Transcript
Discussion (0)
Hey everyone, welcome to the Drive Podcast. I'm your host, Peter Attia. This podcast,
my website, and my weekly newsletter all focus on the goal of translating the science of
longevity into something accessible for everyone. Our goal is to provide the best content in health and wellness, and we've established
a great team of analysts to make this happen.
It is extremely important to me to provide all of this content without relying on paid
ads.
To do this, our work is made entirely possible by our members, and in return, we offer exclusive
member-only content and benefits above and beyond what is available for free.
If you want to take your knowledge of this space to the next level,
it's our goal to ensure members get back much more than the price of a subscription.
If you want to learn more about the benefits of our premium membership,
head over to PeterAtiyaMD.com forward slash subscribe.
My guest this week is Dr. Trena Sutcliffe.
Trena is a developmental behavioral pediatrician and the founder and medical director of the
Sutcliffe Clinic in the Bay Area, which partners with patients and their families to evaluate
and provide supportive care for children dealing with issues such as behavioral changes, developmental
differences, and school struggles.
In my conversation with Trenna,
we explore her journey into developmental
and behavioral pediatrics.
In fact, she was the first person to be practicing
under this designation at Stanford
when she arrived about 20 years ago.
This includes her background in genetics,
pediatric neurology, and her current work
in leading multidisciplinary teams around the care
of children with autism, ADHD, and anxiety. We spoke about the diagnostic processes for autism, ADHD, and
anxiety, which she calls the 3As, discussing how these behavioral diagnoses
are made based on clinical traits and the criteria depending on the age of a
child. We focus on the overlap between the 3As and how comorbidities are
common in children with each of these conditions. Trena emphasizes the importance of a personalized treatment plan to consider the whole child,
including their environment at home and school.
We talk about the changing diagnostic criteria for autism between the DSM-4 and the DSM-5
and what some of the drivers might be for the increase in the prevalence of autism today.
This is a very hotly discussed topic.
Trina provides a very thorough discussion
of what the factors are that may be contributing to this.
We discuss the various therapies,
including applied behavioral analysis,
or ABA for autism, behavioral interventions,
and parental training for ADHD.
We cover pharmacologic options,
particularly for ADHD. We cover pharmacologic options, particularly for ADHD
and anxiety, including the use of stimulants,
non-stimulants, and SSRIs.
Trina explains how these medications are used
alongside behavioral interventions to help children
manage symptoms and improve their daily lives.
And we talk about the challenges families face
in accessing care, particularly outside of major urban areas
and the importance of bridging healthcare and education
to create a more holistic approach to support children with these developmental conditions.
So without further delay, please enjoy my conversation with Dr. Trena Sutcliffe.
Well, Trena, thank you so much for coming all the way out to Austin. Really nice to meet with you
in person. I've heard a lot of things about you from various colleagues in the Bay area.
And frankly, this is just a topic that I think a lot of people are interested in.
Obviously many of them parents, but I just think people in general are kind of
interested.
And so maybe just before we jump into it, let's spend just a couple of minutes on
your background so people understand who you are and why I wanted to spend so much time with you.
So you trained in pediatrics, developmental, and behavioral.
Well, let me not try to summarize what you've done.
Tell me what you've done.
Okay, well initially I did an undergrad
and master's degree in genetics
and then went on to medical school.
After medical school, I went on
and did a residency
in pediatrics, but ultimately wanted
to do developmental behavioral pediatrics
for numerous reasons, because it just
was a really good fit with my interests and passions.
So I did actually a year in pediatric neurology,
and then a full fellowship in developmental behavioral
pediatrics before moving to California.
Your interests today primarily revolve
around behavioral therapy for three things
that we're gonna spend quite a bit of time talking about.
I won't commit to the order yet
because that'll come out of our discussion,
but somewhere along the way we're gonna talk about autism,
we're gonna talk about ADHD,
and we're gonna talk about anxiety.
So coming at this through the lens of what you do today,
which is running a really large,
successful, multidisciplinary clinic,
I assume this is just for children,
so this is up to 18 years old, basically,
is your patient population?
Correct.
Let's start by just getting some of the
diagnostic criteria straight.
I think that in general, most people listening to us
have a gestalt for what each of those things are.
But I think it would be helpful to maybe understand
clinically how you look at each of those.
So let's start with anxiety.
How I look at it clinically.
Yeah, and how is it defined?
How clear are the diagnostic criteria?
What does the DSM-5 say about it?
And how does a practicing clinician use that or maybe modify that in
the way that they try to come up with a diagnosis?
So with all of these diagnoses, anxiety, ADHD, autism, they're behavioral clinical diagnoses.
So it's based on checklists of a number of traits and characteristics.
Now you need to be working with a clinician, a physician,
who has enough experience diagnosing these conditions,
trained in these conditions.
But essentially, that person needs
to be an expert on what the clinical picture looks like,
because there's no biomarkers for any of these conditions.
That's the key thing.
There are no blood tests.
There are no brain scans to say who has anxiety, who has ADHD, who has autism. I have families
come to me all the time and I explain to them I have these clinical boxes and labels and
diagnoses in my clinic and these boxes and labels are manmade. We create these lists of criteria, but neurobiology in the brain
is much more complex than these boxes. So the key thing is to have a clinician
who looks at the, and for me a child, and looking at their traits at home, at school,
in multiple environments, collecting data through talking to parents' history,
getting information from
people other than the parents, so that's using rating forms or talking to
teachers and therapists. Ideally we get to see the child in their real-life
environment, so maybe even observing them in a real-life place like school, and
then doing assessment in the clinic to collect information about them. And with that, that clinician decides
whether or not they meet diagnostic criteria,
a list of traits or characteristics
described in a book called The DSM,
and then we decide whether that child meets that criteria.
But one of the key things is about whether or not
those traits are creating impairment.
And that's a key criteria for any of these
diagnoses. For example, anxiety. We all have feelings of anxiety. Anxiety is
actually a very appropriate normal feeling that we should all have but it's
all about how much impairment is it creating, how does it impact function, and
impact someone doing their job.
And for a child, their job is to learn and go to school, make friends, practice communicating
and interacting with other peers, and be a positive contributor in their community, which
is school.
So it's about how these traits impact their function in that job.
What would you say is the youngest age
that each of those could be diagnosed?
And I do want to talk a little bit about
what the layers of diagnostic criteria are,
but just starting at the first question,
which is if a parent says,
hey, I think my child has such and such,
I really want to get a workup,
is there an age beneath which you would say
this might not be a good use of time and energy?
So for autism, although the typical age for diagnosis
is more like three or four, we can confidently
make that diagnosis as young as 18 months of age.
Wow.
And I'll be honest, in the last 20 years,
there's been one or two cases where I've made it
at 15 months of age because it was
very significant and obvious. Most often at
that young age, we do wait a few more months to watch how the child develops because kids are
moving target. But with autism, it can be 18 months, two years of age, although half of the
cases of autism are diagnosed over six. With ADHD, you can make a diagnosis as young as four years of age.
But again, I'll just tell you from my clinical experience, I rarely jump onto the diagnosis
with a four or five-year-old because they're still a moving target, although I may start
interventions, behavioral interventions and parenting support. But there are a lot of
four-year-olds who are pretty busy. So I generally wait closer to school age, although technically you can make it as young
as four.
So that would be, for most kids, when you say school, you don't mean preschool, you
mean actual kindergarten, five to six.
Five to six, I think.
A lot of people will wait till five or six to really see how that child is evolving,
although technically you could make it younger.
And then with anxiety, there's separation anxiety.
There's something called selective mutism
in young kids, in preschoolers.
So anxiety, there's many different types of anxiety,
but there's definitely anxiety conditions in preschoolers.
Let's talk a little bit more about that.
I don't know much about anxiety,
and I'm guessing most people listening
have a sort of hand-waving sense of what it means,
but you said separation anxiety is an example.
Anyone who's been a parent can appreciate moments of that.
99% sure our puppy has separation anxiety.
What are some of the other types of anxiety
and how do you look to spot those in kids?
So again, just to emphasize,
anxiety is actually a normal emotion that we should all have.
So it's all about whether it's created enough impairment.
So in the anxiety bucket, there's multiple different types.
So someone may have generalized anxiety
where that's exactly it, it's generalized.
It's seen in multiple places as pretty pervasive.
People can have specific phobias towards dogs
or spiders or other things.
I mentioned separation anxiety, so that is a condition.
And again, yes, many toddlers have
separation anxiety. That's very normal. It's about how severe and significant the anxiety is and how
pervasive it is and whether it is impacting function. So when it's impacting the ability for
a child to go to childcare or preschool, then it's something we need to help. Other types of anxiety, there's something called selective mutism. Children who are able to speak very well and speak well at home or with familiar
adults but do not speak and are mute outside that familiar environment. There's also obsessive
compulsive disorder where people have obsessive thoughts or compulsive behaviors. So there's many types of anxiety, conditions out there,
and children have these.
You've reiterated it twice now,
which tells me how important it is.
It really has to come down to this impairment thing.
It does.
All of us could probably read through the DSM-5
and place ourselves in each of these diagnostic buckets.
I know I can. Yes.
I've done that exercise,
and it turns out I could make the case I have everything.
But the truth of it is what I try to ask is,
which is maladaptive?
Which is mostly giving me the negative response
that is impacting relationships or work
or these other things.
I like that framework for kids
because if you think to yourself,
oh, my kid has ADHD, but they're doing well in school.
They're progressing in reading, writing, arithmetic.
They enjoy playing sports. Yeah, maybe they're a little bit more rambunctious, but they have friends.
How would you help a parent sort of navigate that? If they came to you and said, I think
my son or my daughter has ADHD, like what are kind of the impairment style questions
you would be asking to paint the contours of this condition, even if you acknowledge
that that kid's got a lot of energy.
Those are great questions because it is definitely a spectrum. There's a bell curve.
Yeah.
We're all on a bell curve. For all of these diagnoses, there's a bell curve.
And so it's when does it become leaving the average range, the typical profile and over into
a what we call a disorder. And actually, I don't like to use the word disorder for these conditions
either because I think they're just learning differences
and thinking differences as well.
But when does it become a disorder?
So questions around impairment.
So for me, one of the number one things I talk about
with families is self-esteem.
How is it impacting that child's self-concept?
How they see themselves?
How is it impacting their relationships with peers?
That's another key one. So does
it impact social interactions? Does it impact how they connect with peers? Does
it impact the feedback they're getting from peers? How does it impact their
ability to learn and access learning opportunities at school or on the
playground? So are these traits impacting their ability to
fully engage in learning, be successful, show their potential? The self-esteem
thing is very important to me though. So for a child who has a biologic
condition, these are all biologic. There's neurochemicals, there's genetics
involved. These are biologic conditions.
If for a child to have a biologic condition
and be in class and then feel bad
because they are worried they're not doing well enough
and they're getting a lot of negative feedback
from teachers and peers,
not because those people are trying to be mean or negative,
but they have to constantly remind that child because that child is forgetting things, losing things, forgot to put their
name on the piece of paper, completely off task.
He keeps losing things.
Losing, yeah.
So it's losing, forgetting, it's not completing tasks, it's not sustaining attention in a
conversation, it's actually avoiding tasks that require a lot of sustained attention.
So there's a lot of these traits where it's impacting this child's ability to be successful
day to day at school.
How do you assess self-esteem?
What questions are you asking the child when you actually get to sit down with the child
to determine that?
And is there anything you can glean on that dimension from speaking
with anybody other than the child?
Yeah, you speak to the child and you do talk to others, both of those things.
When you talk to the child, there's multiple different ways of doing it.
Not always easy to get the answer.
With younger children, we sometimes use approaches where we actually
are talking about a third person.
So there's a number of different techniques where you are working with a child.
Of course, you're building relationship rapport with a child.
There needs to be trust.
But there's a number of ways that we assess it where we actually may talk to them about another child
so that you have another third person because it's sometimes easier to talk about a third person than yourself. So talking about situations about how another child
would feel at school or why does another child feel uncomfortable at school or
why does a child come home crying some days and then you hear their stories. So
when they children talk about that they actually relate to their own situations
and they start to say like well Johnny came home from school crying because nobody wants
to play with him because he always messes up rules to the game.
What is the age window in which you can utilize that technique?
It's mostly primary elementary school age. So I feel like by the time I get to a
second grader, they are second, third, fourth,
fifth, they're able to share these stories. About other people, you mean? Yeah. Yeah.
Interesting. Yeah. When they're older, they'll talk about themselves. It's hard to reflect on
your own feelings and thoughts. For a child to identify their own emotions and the why behind
their emotions is challenging.
So you've in that description actually made a pretty clear I think case for some of the
traits that are showing up in ADHD and in anxiety, all the different variants of it.
Let's talk a little bit more about autism.
Now of course it is referred to as ASD, right?
Correct.
Autism spectrum.
Autism spectrum disorder.
We'll park for a moment the use of the word disorder
and maybe come back to that a little bit.
But tell me today, how is the diagnosis of autism made?
Because I think when many people think of autism,
if they're old enough, they might think a rain man.
You're gonna think of somebody who,
in a very short interaction,
a non-clinician would go, Oh, that person is not neuro-typical.
That person clearly has something about them that's quirky and very different.
And you might think of even more extreme examples of children that are
nonverbal and things of that nature. But again, given the nature of this,
and the fact that it's a spectrum, that must make it even more challenging to find the diagnosis, correct?
Very, very.
I have so much to say about autism, the diagnosis and how we make it and how it's changed so
much over the years.
So autism spectrum.
So first, it's a spectrum, huge spectrum of what this means when we talk about autism
spectrum.
It goes from what people remember it from decades ago
as from non-verbal, very little communication skills,
being somewhat isolated, not interacting with other people,
mannerisms such as flapping your hands.
That's sort of a classic description that we do remember
from over the last couple of decades.
Nowadays, many children who have a lot of speech and language
skills, who do communicate a lot but struggle
with the social communication that we have with each other,
who have many, many strengths but do struggle
with social skills and do have some restricted interests
of repetitive behaviors, they also
qualify under this umbrella
term called autism spectrum disorder. And this term, autism spectrum disorder, that
term came out in 2013 with the DSM-5. So how we diagnose it is based on again clinical
traits, but the definition and the checklist of those traits have actually changed many times over the last few decades.
So currently, it is you work with an expert who has a lot of experience with autism, and
they do an analysis of someone's behavior.
And the two areas that we look at, social communication skills, and the other is the
repetitive behaviors restricted interest. So for social communication skills, our current diagnostic criteria requires that a
patient has differences in three specific areas. One is their social
reciprocity. So this is the back and forth of social interactions. It's how do you initiate socially?
How do you respond socially?
The second area is related to nonverbal communication skills.
So it's how someone uses their nonverbal communication,
eye contact gestures, as well as how they understand
and interpret somebody else's nonverbal communication.
And then the third area is related to how they understand relationships.
So it's about building friendships, playing with peers,
how they understand the social context of being in a group.
So those are the three key areas
when it comes to the social communication piece.
And in order to get the diagnosis,
you do have to have differences in all those three areas.
Is this something that is done during one assessment
or is this something that's done over repeated assessments?
Depends on the level of severity in the child.
So first of all, it's important that whoever's doing the assessment really understands that child.
Who in your clinical team does this? What type of training does this person have? Is it a physician?
It can be a physician or it can be a psychologist. That's generally who does it.
So physician would either be a developmental behavioral pediatrician or a psychiatrist. That's most often. Occasionally
it's a pediatric neurologist
or somebody else with some sort of similar background in training, but generally DBP
or psychiatrist. And if it's not a physician, then it's a psychologist that usually does
the assessment. And so the assessment could be multiple things. There's no gold standard
like the assessment has to include certain components. But again, like I mentioned, it's
important that the clinician get to know the child.
I think it's important to understand the child's profile.
The label is only one piece of it.
If someone tells me their child has autism,
I actually really don't know much about their child.
Say more.
Because you tell me your child has autism,
I really don't know what your child is like
if someone tells me that on the street.
Then we come up with treatment plans
for like a child with autism.
It's like, well, there's a saying, you've Then we come up with treatment plans for like a child with autism. It's like, well, there's a saying,
you've met one child with autism,
you've met one child with autism.
And so to really make a difference with the treatment plan,
you need to understand that profile of that child,
that child's strengths and challenges.
And so for me, there's multiple goals with the assessment.
One part of the assessment is to make a diagnosis
because the diagnosis can be a tool
to help the adults around that child
better understand that child.
It gives some sort of structure
of like how to approach that child
and leverage their strengths and work on skill building.
It can help get resources at school or through insurance. So the diagnosis is
a tool. However, to really make a difference, you want to understand what about that child is unique
and different and how do you support that child. So you're asking how do you do an assessment?
So when it is a more significant case with significant impairments,
we frequently can make the diagnosis. I'll just be honest, you can make it pretty quickly.
You should take a good history. You should definitely meet with the child, work with
the child in the clinic. But there are many children where a trained clinician can do
that diagnosis pretty quickly in a child with
very significant autism. It'd be obvious to you if you were in a restaurant, you saw someone
with autism. It's obvious to many people. But for children who have milder symptoms,
it is really important that they're probably use multiple visits to see the child on multiple
days, that different types of assessments are done directly with
the child in addition to taking history with the parents and in addition to collecting
information from other people involved in that child's life, such as teachers or therapists.
It's important to get different perspectives.
So you mentioned that the diagnosis in probably more severe cases can be made earlier and
earlier in life.
Sounds like sweet spot is three to four years of age, but then you said half of the kids
are diagnosed above six.
Yes.
So is that something that is a relatively recent phenomenon of the past decade since
the DSM-5 broadened the inclusion criteria?
Or was that even true in the 70s and 80s?
It's complicated.
I'll say it has a lot to do with the new diagnostic criteria.
So before 2013, we had Asperger's syndrome.
We don't use that diagnostic label anymore.
And we also had something called PDDNOS, Pervasive Developmental Disorder, not otherwise specified, a mouthful.
And PDD-NOS was a term we used when it had similarities to autistic disorder, because all
three of those names were under the umbrella of autism. And so there were a lot of kids who
received this PDD-NOS because they were like... Something's different. Something's different. They're sprinkled with bits of autism,
but they didn't quite meet all the criteria.
When you didn't meet all the criteria, you got PDD-NOS.
And then there was Asperger's syndrome,
which generally described an individual
who had good cognitive skills,
average or high cognitive skills, intellectual skills.
They had a lot of speech and language skills.
They actually have huge vocabulary,
but again, their social reciprocity,
back and forth conversation, picking up on social cues,
that was atypical.
And they also had a lot of restricted interests.
They would have things they were really interested in,
but then they would dive deep into those things.
So in 2013 with the DSM-5,
we put all of that together under autism spectrum disorder.
And so now the kids who have the more clear cut,
very traditional autistic disorder,
they're picked up at two years of age
or two and a half, three years of age.
And it's the kids who have the stronger cognitive skills,
they have speech and language present,
they're picked up later.
By the way, nowadays with the new diagnostic criteria,
language impairment may or may not be present
in the diagnosis.
When you give the diagnosis of autism spectrum disorder,
you also have to clarify whether there is
intellectual disability, so with or without intellectual disability.
And then we say with or without language impairment.
With all of these changes, the spectrum, it's very broad.
Now, this is a question I'm sure you get asked all the time.
So the CDC said in the year 2000, one in roughly 200 kids,
150 to 200 kids had autism.
Now of course that's pre this change of the DSM-5.
So we can only take that to mean that those were the kids
in that bucket of more extreme autism
that did not include the PDD-NOS,
was that what the other one was called?
Yeah.
And Asperger's.
But if you look at the data up until prior to that change,
the last year prior to that change in 2012,
it was down from one in 150 to one in 69.
So in other words, there was something that was increasing
the prevalence or diagnosis by about a factor of two.
Then we get the change in the DSM
and today we're at one in 36.
So it begs the question,
what is it that is driving the increase
in the prevalence of ASD,
notwithstanding that there has also been
a larger net cast around it?
I can't believe it's one of 36,
because I've been doing this for 25 years,
I can never keep track of the numbers.
Every time I go to an annual meeting, the number changes.
And it is one in 36 now that we diagnosed.
Well, again, that's what the CDC said in 2020.
So I'm gonna go with whatever numbers you take.
I'll believe your numbers more than mine.
The point being that the numbers have changed drastically.
And yes, people will say part of it is
because the definitions change, there's more awareness,
there's more resources, there's more clinicians
making the diagnosis, but people in the field believe
that those changes don't explain the drastic changes
in the numbers and there has to be something else involved.
And there is a lot of research in this area looking at the impact of the environment and
epigenetics.
And what roles those two things have in increasing the rate of autism in our population.
If you're at a dinner party and you get cornered and everybody wants to talk about this,
how are you walking people through this?
What are you saying, let's put the diagnostic criteria aside,
let's put the keys under the lamp post aside,
meaning wherever there's more attention,
you're going to see more things.
What are some of the environmental things
that you think could be amplifying this?
There is thoughts around pollution,
maternal infection, prolonged fever during pregnancy,
the health of the placenta, stress, parental age.
There is a lot of environmental factors
that have been implicated.
But what I wanna say is just to take a step back first,
just kind of talk about the cause of autism,
the genetics and the environmental piece,
just to make it really clear.
The word autism describes a constellation of symptoms.
There are many, many causes for autism.
There isn't a single cause.
What causes autism is very complex,
and we actually have more questions than answers.
It's felt though that it is like a 10 hit model, meaning we don't know that the number
is 10, but the idea that there's multiple-
It's not a two hit model.
There's many factors involved and it's almost felt like it's gene, gene, gene, environment,
environment, environment, and then now it's like epigenetics, epigenetics, epigenetics.
And so it's multiple hits.
And the order of the hits and the timing of the hits
are also felt to be very important.
Let's start with the genetic piece.
We've had a number of folks on the podcast over time.
So the listeners are probably familiar with what
we mean by the heritability of something,
but maybe just for folks that need to brush up on that. We would talk by the heritability of something, but maybe
just for folks that need to brush up on that.
We would talk about the heritability of a condition, whether it be depression, whether
it be schizophrenia, whether it be bipolar disorder, as largely determined by you have
identical twins separated at birth, raised in completely different environments.
What is effectively the probability that they're both gonna come down
with the same psychiatric condition?
And that's unfortunately, fortunately,
that's the purest way we can get at
what the genetic heritability is of something
when you don't know what the genes are
or when there are so many genes and it's very complicated.
And my recollection is that the heritability
of autism
is quite high.
I don't remember the number, can you enlighten me?
It'll be anywhere from 70% to 98%,
depending again on the definitions used at the time,
but it's well over 90%.
Wow, I didn't know it was that high.
I thought it was in the 80s, which is still very high.
Am I also correct in my recollection
that the heritability of autism is higher
than it is for any other condition in the DSM?
I believe so.
Yeah.
In other words, even schizophrenia, even bipolar,
even depression and things that we know
have very strong genetic components.
None are as high as it is for autism.
Correct, there's definite genetic component to this.
But may I say, so it's not one gene?
Yeah, I was just gonna say,
so let's make sure people understand.
It is not one gene, it is multiple genes.
So anybody with autism, they have multiple genes
that have been changed.
So there's multiple genetic changes in anybody with autism.
And the other thing is, every person who has autism,
they probably have a different group of genes
that have been changed.
It's actually hundreds, and some people say up to like
a thousand genes have been associated with autism.
Yeah, so I think maybe a way that I would explain this,
and please correct me if you don't like this analogy, I liken it to cancer with a fundamental difference.
So hear me out for a second and feel free to shoot this down.
Cancer is mostly about somatic mutations and not germline mutations, meaning most of the
time when a person gets cancer, it is not based on genes that they were born with, it's
based on genes that were at one point normal that have since acquired
mutations in their mutated state. They no longer function.
Normally the person develops cancer.
So this complicates my analogy because only about 5% of cancers arrive from
germline mutations.
Whereas the genes that are implicated in autism are indeed germline.
You're born with them. However,
the point I want to really make is comparing the somatic mutations of cancer
to the germline mutations of autism.
And the point I'm trying to make is that when you've met a woman with breast cancer,
you've met a woman with breast cancer.
You're not going to find too many women that look the same with breast cancer.
And that's really why gene therapy hasn't panned out
for most cancers, because to say that a person
has breast cancer tells you some stuff.
You could dig a little deeper and say,
well, it's estrogen positive, it's progesterone positive,
it's HER2-neu positive.
But still, why wouldn't they all respond the same?
Well, it's because they have many different
underlying genetic changes.
Furthermore, they have completely different underlying genetic changes. Furthermore,
they have completely different immune responses in terms of what their tumor looks like.
And so the way I try to think about it myself is if you see a hundred kids with autism,
and let's just pick a number that's somewhat conservative, we would say that that's 85
to 90 percent heritable. It simply means that the underlying genes
for each of them were inherited,
but they might have nothing to do with each other
across all of those children.
Just as we would say, all of the women
who have breast cancer have acquired mutations
that gave them breast cancer,
but they could all be very different.
I agree.
Again, I could poke holes in that analogy,
but I think that's maybe an easier way to think about it
because polygenic things are harder to wrap our heads around,
especially when we don't know what all the genes are.
Yeah, so we don't know all the genes.
We know that there is this genetic component.
It's like each child with autism has a different fingerprint
with their genetic makeup.
And so there's these genetic changes,
but some of the hits I mentioned are environmental.
So there is research to show maternal stress,
pollution, maternal diet, parental age,
these things also are associated with autism.
And again, there's a long list.
So there's a long list of things that are associated,
but none of them alone, each one alone is not the key to autism. It's the combination.
The thing I'm still struggling with is, let's take another example that I think we can all
point reasonably at. 50 years ago, the incidence of type 2 diabetes was in the ballpark of
1.5 to 2%. One and a half to 2% of people in the United States had type two diabetes.
Today we're, God, I haven't looked in a while, but it's over 10%.
And I'm talking clear type two diabetes.
I'm not talking about in the gray area of pre type two diabetes.
So let's just say we've had a five to seven fold increase in a condition over the course of one generation.
So then the question of what are the environmental triggers? It would be very difficult to explain
that just genetically that there's been some genetic change. We might have genetic susceptibilities,
we might have genetic manifestations, but the thing of it, something must have changed.
And I think most people would point to our food environment as the leading thing that
has driven that change because the change in the food environment in 50 years is dramatic.
So when we apply the same logic to autism, do we see big enough changes in these environmental
triggers even just over the last 20 years or 25 years to say, okay, 25 years ago, kids were born with the same genetic predisposition.
There can't be that much genetic drift unless we believe we are seeing more
people pair together to combine four genes or genetic combinations that are
producing this phenotype more than we saw before. We can come back to that.
I'd love to hear your thoughts on that.
But let's put that aside for a moment.
If we're saying that whatever epigenetic change is happening is triggered by something
in the environment, and we're talking about if paternal age is going up, if maternal
stress is going up, if maternal nutrition is getting worse, if environmental toxins,
microplastics are all over,
everybody's talking about those things,
heavy metals, whatever it is.
I would love to go into a little bit more detail
and get your thoughts on how those things are changing it.
And we have to talk about vaccines, of course.
There's gonna be a subset of people here,
I think, who understandably would think,
hey, what about vaccines?
Haven't we changed the way we vaccinate kids?
Is that participating in it?
Now, you mentioned that this is an in utero genetic condition.
If that's the case, then childhood vaccines
might be less responsible than some might think.
But I'd just like to hear you riff on all of this stuff.
Because before we get into the what to do,
I still think there's a lot of people asking,
how did we get here?
I wish I had all the answers.
I don't.
I think it's complex.
There have been changes in, you talk about diet, pollution, toxin exposure.
I think that's one piece of it.
It is one piece.
With epigenetics, as you know, it can be epigenetic changes, which
just to clarify for everybody, the DNA sequence is not changed.
It's about tags on the DNA that can change the expression of genes or proteins called histones
that are changed that end up resulting in changed gene expression. But the changed gene expression
can actually be inherited or passed through generations as well.
Yeah, I was going to ask you about that. Do we know that to be a fact that the epigenome is being transmitted?
I think it's controversial. I think it's controversial, but there is some thought about that,
about the idea of the germ cells in a fetus in a grandparent being exposed to smoking, toxins,
changes in food, how that grandparent exposure can actually change
methylation in the germ cells of a parent who's a fetus, who then that germ cell goes
on to be a child with autism. I don't know if that made sense. It was sort of confusing.
It makes a ton of sense to me because I think about this problem night and day. I do want
to make sure the listeners understand that, first of all, this is not established.
Not at all. And I want to make sure they understand what we first of all, this is not established. Not at all.
And I want to make sure they understand what we're saying. So let's explain it one more time.
We have these four things that make up DNA, your C, G, A, and T, and that is the code. That is the
code of life. But on the backbone of those things, you can put little methyl groups,
which is just a little carbon with three hydrogens. And that's called epigenetics.
And by the way, we're all born with methylated groups
all over our epigenome, back of the genome.
Over life, no, that changes.
So we know that simply aging changes methylation,
but we believe that there is differential methylation
in individuals in response to all the things
that you've talked about.
And we know that methylation controls gene expression.
In fact, methylation is probably the single most important
thing that controls differential gene expression
in different tissues.
So the question, the jugular question is,
if you have a methylation pattern,
can you pass that on to your fetus?
And what you said a minute ago is even more remarkable,
which is, would that child, when they develop,
pass that methylation pattern on to their fetus?
At that point, methylation epigenetics
would start to become genetic, right?
It starts to become a part of the germ line.
So, I mean, this is an answerable question,
by the way, in my book.
When I think of things that we should know the answer to
in a decade, I'm gonna put this in the list of things
that we should know the answer to,
just based on the fact that we will have enough longitudinal data, I think, to be answer to in a decade. I'm gonna put this in the list of things that we should know the answer to, just based on the fact that we will have
enough longitudinal data, I think,
to be able to get at this.
I don't know if you're as optimistic as me.
I am.
The key thing is that we do know the environment
impacts the methylation and the epigenetics.
So it's the idea of it crossing generations.
It's the idea of the methylation in a germ cell
is altered or changed because
of some sort of environmental exposure in, again, that parent or grandparent.
And so in that sense, the child is now susceptible to two things, the germ line that they inherit
from both parents and as a fetus, the methylation impact that occurs
as a result of any of these other factors you've discussed.
Who are the people that are studying this most closely?
Is this in the purview of the geneticists?
Is this in the purview of the epidemiologists?
Who are the people that are most working at this?
Because again, as a general rule,
I always think that it's very foolhardy to work
on a problem, an epidemic, without understanding the causal nature of the epidemic. I use the example
of heart therapy. Change the face of HIV forever. One of the greatest success stories of infectious
disease, medicine, but it was all predicated on understanding what the cause was. If you didn't understand that HIV was destroying CD4 cells, you didn't have a prayer of developing
that therapy.
And do you ever worry that what's to say this isn't going to get to be one in three kids
in 30 years?
And are there enough people like you that are going to be able to help parents
and help families and help children with that? I don't want to sound alarmist, but I worry when
we have an epidemic potentially, and we don't have a great sense of causality.
LESLIE KENDRICK That's profound. And I'm thinking about a number of different things. One, I'm
thinking about, because you're talking about this one in three. And I'm just throwing that out as, hey, what if this trend continues, right?
Yeah.
And so one of the issues, though,
is how we define the condition.
That's the thing.
So there is still that, although I
believe that there is this piece with genetics
and the environment and how we are evolving.
And there's this phenotype, this phenotype
where there is differences in social communication skills and
repetitive behaviors of restricted interests, this phenotype, which is on a huge spectrum as well,
I shall make sure this is the thing, when we are talking about these numbers like 1 in 36 and this number continues to increase,
it's not just the kids who are like nonverbal autism. It's this really wide phenotype is increasing.
And so it is important we understand the cause
of why this phenotype is increasing
and then what should we or should not be doing about that.
What do you know about the change in the frequency
or the prevalence of, let's pick one subset of that, which is
the non-verbal or child that is so impaired that I could diagnose them or a parent could
diagnose them.
Do we know if that has remained relatively constant over the last 25 years despite the
change in diagnostic criteria?
I believe there's an increase in that number as well,
but the numbers that are put out there,
the really profound numbers,
actually describe the entire spectrum,
and they don't actually subdivide
into the different parts of the spectrum.
Do you have a ballpark idea,
so if the overall diagnosis of autism
has increased five-fold in the last 20 years,
has that more severe part gone up by 50%, by 100%?
I mean, what do you think it is, or what do you know it is?
So we subdivide autism spectrum into three buckets, level one, level two, level three.
So the more significantly impaired children would fall into level three, where they require
very substantial support. There are very few research studies that actually look into these
sub buckets. And I have to be honest, I'm not sure clinicians are always great at identifying
kids in the sub buckets either. Like you and I are talking about a very specific profile that should be very obvious to
identify, but there's other kids in subbucket three that are sometimes put in subbucket two,
depending on what clinician they see. And I'm going to guess that subbucket three is not the
totality of the children that were called autistic prior to 2013. Is that a safe assumption?
Yes. So you can't even say, assuming the data existed, and it sounds like they don't, of the children that were called autistic prior to 2013? Is that a safe assumption? Yes, yes.
So you can't even say, assuming the data existed,
and it sounds like they don't, we can't just say,
what was the prevalence of autism in the DSM-IV,
and how does it compare to ASD sub-3 today?
That wouldn't even be a meaningful comparison.
I'm not sure if anyone's looked into it, but yeah,
I don't know if they would be able to do it.
But even if they did, it wouldn't be apples to apples. It's not. Okay. By the way one
of the reasons they actually went from the Asperger syndrome, PDDNOS, autistic
disorder, because I was actually quite controversial when they actually decided
to put all three of those things under one umbrella called autism spectrum, was
because clinicians did a really poor job of deciding.
Which bucket you were in.
Which bucket you were in.
So you would have a child and one clinician would call it Asperger's Syndrome, another
person would call it Autistic Disorder, another person would call it PDD-NOS.
So they decided, okay, rather than having these three names, let's put it all under
Autism Spectrum.
So then they put it under Autism Spectrum, but then they have level one, level two, level three. But I would still say that clinicians still
struggle sometimes where there is a little bit of overlap. It's not always clear.
Now, if you go back to DSM-IV when, as you mentioned, physicians are struggling to know
which of these buckets to put them into. As an outsider looking in, my first question is,
does it matter in terms of treatment and resources? Does it matter
more in terms of outcomes and support? There must be a reason why people cared about that. In other
words, if you had a child in the year 2000, who one clinician said, this kid has Asperger's
syndrome and another person said, no, they're autistic. Was that going to make a material difference in the type of support that they got?
And most importantly, the type of person they were going to turn into.
Like were they going to reach their full potential in their differential capacity?
So it did make a difference with respect to resources.
Children with Asperger's syndrome frequently did not get support or support covered. I see, okay.
You needed Autistic Disorder to get support.
And what about PDD NOS?
Wastebucket?
Yeah, people didn't know what to do with that.
So if by putting everything under autism,
then it's like, okay, if you have autism,
you should receive services.
It was a tool, the label's a tool
to understand and get resources.
Now we have level one, level two, level three now. Level one is it says requires support. Level two is require substantial support. Level three is require very substantial support. My concern is
that again when a child is level one, they don't always get the support they need
because they have so many strengths.
So kids in level one,
frequently they have good cognitive skills.
They have a lot of language skills.
They struggle with some social skills
and they may have some difficulties
with executive functioning and coping skills at times.
But again, it's considered mild
and a lot of those kids don't get support.
And I think that's unfortunate
because they also are the kids that respond
to intervention so well if they get a little coaching
on how do you cope with distress?
How do you cope with change?
How do you practice some social skills?
Not that they have to change,
we don't need to change everything about them,
but giving them a little bit of support
about how to, again, be adaptive in the community.
Giving that support goes a long way with that group,
but frequently they don't get the support
because they're called level one.
Help me understand the natural history
of those kids back in the 70s and 80s.
Back in the 70s and 80s when you and I were kids, nobody thought anything of those kids,
right?
Certainly we're going to get labeled with autism.
They certainly weren't going to show up with in-school programs to help them with their
social skills and with their communication skills.
As you pointed out, they're intellectually not impaired, so it's not like they're going
to struggle in school, but there's clearly something that they're struggling with.
Obviously, this hasn't been studied.
But I'm very curious, based on your experience
and your judgment, are those people that just went on
to pick careers where they didn't have to interact
with people, but they could still do challenging cognitive
work, what was the natural history of them?
There are clearly a lot of them.
There are.
There are a lot of them.
And I think they found a path that made sense to them.
They obviously learned what their strengths were, and their strengths may have been around
memory, detail-oriented, following rules that are black and white.
They may have had really wonderful cognitive skills in certain areas that were less around
inferring and social skills and more concrete.
And yeah, we don't have studies to say this for sure,
but my guess is they have lived happy, successful lives,
a lot of them, some of them,
doing things that they enjoy doing or passionate about.
They probably have found ways to not engage
in large social settings,
but there's a lot of careers out there
that are a good match,
and they also have relationships and marriages,
which I wanna emphasize that.
People with autism get married.
I just think there's zero chance
that there aren't thousands,
if not tens of thousands of these people
listening to us right now,
because they're adults today,
and I wonder if they're listening to some of this
and they're saying, this resonates.
I get that. When I was a kid, I was hyper-focused on this stuff.
I wasn't interested in a whole bunch of stuff.
It was a little harder for me to interact with other kids and things like that.
And yet I found my path and here I am today.
So I talk to parents all the time about this because I evaluate children.
I evaluate children for autism or ADHD.
And very often when I'm evaluating the child,
at some point while I develop this relationship
with the family, the parents say,
gosh, so much of my child is in me.
As you are describing my child
and my child's strengths and challenges,
and I see me, and this is exactly what I went through
when I was young.
And then they share how hard it was.
And they say, gosh, no one understood me or I felt bad because I was misunderstood or I thought it was my fault.
I didn't try hard enough.
So I have to say it can be validating for an adult to learn that it wasn't their fault.
And this is part of their wiring.
I have many, many parents who ask me,
should I go get assessed now?
What do you say?
I ask questions.
I think information is power.
I think it's good for them to be thinking about it,
whether or not they go on to actually get assessed.
With the autism piece, often they don't.
With the ADHD piece, they often do,
because they realize actually their ADHD traits are impacting their function and success at their job.
So sometimes they will actually go to a psychiatrist to get an assessment. But I
do share with them the genetics and the family history. So what do I say? I
validate. I say, yes, you're telling me that growing up you had many traits that
today we would classify under one of these diagnoses.
You're right, it is possible
because these things do run in families
and there is a highly genetic component.
And I think sometimes just that conversation
can be therapeutic itself in that someone feeling validated
and they have that aha moment, like, okay,
this explains a lot.
And then they can feel good as well because they're like, okay, this explains a lot. And
I've gone on and I currently have my family and I'm doing well in many parts of my life.
But it helps them also understand like, ah, but now I understand why sometimes I do have
these challenges at work or with my spouse. It's interesting just sometimes
having a perspective where now you can see your challenges through a different lens sometimes
helps a person just to actually now think about okay now I can adjust or understand the triggers
or can reflect to think about how do I want to respond the next time. So I think again that
information's empowering.
Even if they don't ever go to therapy or do anything else,
just actually starting to become informed about it can help.
Yeah, and I would imagine it helps them a lot
with their child because they're seeing both,
hey, my child has this diagnosis that now partially explains
the challenges we might be having, et cetera,
but at the same time, because I can empathize
with that child if I've experienced it,
it makes you a better parent.
So everything you said makes a great case
for widening the diagnostic envelope.
Because if we go back 40 years,
we had this narrow, narrow envelope.
In other words, we had a test that had very, very high
specificity, but very low sensitivity.
You were missing a lot of people.
But you didn't get any false positives, that's for sure.
You didn't over-pathologize.
When someone was autistic, they were really autistic.
Today, we have the opposite problem.
We have a high sensitivity, low specificity test, sort of.
I'm making that up, but just to bring it to cancer diagnostics for people.
So now anybody who's autistic should get diagnosed, but then we're stretching what that means.
And a lot of the people getting diagnosed today, frankly, maybe without any support
would go on to do just fine.
Do you worry that when the DSM-6 comes out,
it could have a wider envelope
and we could start to get to a point
where someone might say,
hey, are we over pathologizing this?
Yes.
And are we getting to a point where,
well, what does normal even mean anymore?
I agree with that so much.
So I actually ask that question all the time.
I do wonder every time a child has a few of these traits, whether or not we're coming up with
the diagnosis every time someone is just a little bit different. And rather than realizing there is
neurodiversity, we're all different, we have to give a name to it all the time. It's an interesting
debate and you will have your whole different perspectives. I mean, the name gives us a way to get resources
and help people, but I also concern that we have
to give everything a name.
I actually wonder in the next DSM whether we'll
tend to take it a step back, whether the pendulum
will swing a little bit.
And when does that do?
I don't know.
What was the gap between three and four
and four and five? 15 years?
I would say a couple decades.
It could literally be another decade.
Another decade, it can be.
But level one, we were talking about level one autism.
So I'm concerned that the kids in level one autism
might actually be part of several different
diagnostic buckets.
Children who identify with level one autism, they see one
clinician, that person may diagnose autism. They see a second clinician, that
person may diagnose ADHD plus anxiety. They don't even call it autism. I see
this all the time in my clinic. I have kids who come to clinic and they may see
three other clinicians before they saw me. Really great clinicians, high
standards, experts, but there's a lot of
blurry lines with the level one autism and you will hear different diagnoses. So back to your
thoughts around future DSMs, I wonder how we're going to address level one autism and is it the
same condition? How many different conditions are in that bucket? See, to me, the way I would think about that is I would hope that by the time we have to
make that decision, we would have enough data. And the data would ask the most important
question, which is how are we impacting outcomes? In other words, when we widen the diagnostic
envelope and said that we're going to now have this ASD class one in here, that opened
the door for more resources. That meant more kids had programs
at school. What's IEP?
IEP.
IEP. More kids have IEPs at school. What does that stand for? Individual?
Education plan.
Education plan. And at the end of the day, what we want to know is, are those kids doing
better? And if the answer is yes, then it's probably worth keeping. If the answer is,
that didn't make a darn bit of difference. all we did was create a bunch of anxiety for the parents,
and maybe it didn't.
Now again, I don't know how one goes about answering that,
but I would hope that somebody a lot smarter than me
is thinking about it through that lens,
because we can't lose sight of the whole purpose of this.
Like the purpose of the diagnosis anywhere in medicine
should be to impact an outcome.
A diagnosis for the sake of a diagnosis
is not a particularly valuable tool
unless you're an epidemiologist,
but even there it should be all in the spirit of
how are we making people better?
I agree.
And that's why again, I agree that the kids in level one
should be receiving services.
Otherwise, what's the point of giving the diagnosis?
Yeah.
So they should be receiving services.
And if we need to call it something by a different name, who cares?
As long as it gets the service that makes them better off than they would have
been had they received no service.
Before we get into more of the details about what you do specifically treatment
wise, I want to finish one other bit of the diagnosis piece,
which is, can
you talk a little bit about the overlap? You just did it sort of a second ago about ASD,
ADHD and anxiety. How often do they overlap? What do those Venn diagrams look like?
I'm going to start off by saying we diagnose anxiety in kids and there's that bucket. And
there's many kids who just clearly fall in the anxiety bucket and meet criteria and there's that bucket. And there's many kids who just clearly fall in the anxiety
bucket and meet criteria and it's really clear to see that. There are kids who have ADHD
and clearly meet diagnostic criteria for ADHD and fall in that bucket. And then there are
kids who clearly fall into the autism bucket. I'm going to focus on the autism bucket first. So we say that about half of kids with autism also have a diagnosis of ADHD.
If you look at the numbers, they're anywhere from, you can find reports for anywhere from
like 40% to 70% of kids, but we say about half of kids with autism actually do have
a diagnosis of autism.
Interestingly, before the DSM-5,
before 2013, we were not allowed to give both those diagnoses together. So they were mutually
exclusive. If a child had autism, we did not give a diagnosis of ADHD. So starting in 2013,
we did and we give it a lot. So a lot of children with autism have ADHD symptoms as well when we give that diagnosis. And about 40% of kids
with autism also have anxiety. This makes sense when you think about the parts of the
brain involved. When you think about ADHD, we're thinking about executive functioning
skills. We're thinking about prefrontal lobes. When you're thinking about anxiety, you're thinking about the amygdala.
And then when people have done neuroimaging studies
in kids with autism,
we find there's many areas of the brain involved,
but in particular, frontal lobes, the amygdala,
as well as the cerebellum, temporal lobes,
there's many, many areas of the brain involved.
But kids with autism do have challenges
with executive functioning and anxiety, although those are not part of the brain involved, but kids with autism do have challenges with executive functioning
and anxiety, although those are not part of the diagnostic criteria. So those are associated
symptoms, associated traits, associated diagnoses, so the comorbidities, not part of the core
diagnostic criteria, but there's a lot of overlap. If 50% of them have ADHD and 40% of them
also carry a diagnosis of anxiety,
is there a percent of those that are
overlapped and have all three?
Yeah, a lot of them have all three.
I don't know the exact number for that one.
Okay.
This is the thing, these kids,
they present with the core features of autism
along with the executive functioning challenges
and are anxious.
Okay, so now what can we say about kids with ADHD and anxiety? What's that overlap?
Kids who have ADHD and anxiety, their numbers towards autism are not as high.
So there are a lot more kids with ADHD who are not diagnosed with autism.
But there's a lot of overlap between ADHD and anxiety.
So ADHD frequently has a partner, is what I tell families.
If you have ADHD, you often have either anxiety or some other mood challenges,
or you have learning differences.
So learning disabilities are frequently present to kids with ADHD,
or you have oppositional behaviors.
So there's often a second condition present in kids with ADHD.
Say more about oppositional behavioral tendencies.
So there is a diagnosis out there called oppositional defiant disorder.
That is a diagnosis that I don't use quickly or often in young kids.
When I see oppositional behaviors. This is my personal approach,
is that I will say I see a child with oppositional behaviors.
What does that mean? It means someone who argues,
doesn't follow rules, disobeys, lies.
Kids with these types of behaviors,
I want to understand the why before I jump into saying
that they have oppositional defiant disorder.
Technically, maybe they meet the criteria.
Again, it's the checklist criteria for that name.
But to me, that name doesn't help me.
It's just a name.
It's like, okay, I have a kid with ODD, we call it.
It's like, how does that help me?
What do I do with that?
So if I see a child with oppositional behaviors,
I'm like, okay, what's the function behind that behavior? And so I
can come up with reasons for why a child is oppositional. So we all have seen kids
who have meltdowns, who fight, who yell, who argue. It's like, what's the function
behind that? And so it may be that child is actually anxious. I'll tell you a lot
of oppositional behavior in kids is driven by feelings of anxiety and embarrassment.
It may be the child is impulsive.
That child lies and argues and yells no quickly
because they're impulsive and they have untreated ADHD.
It could be that child struggles
with understanding social context and social skills.
They actually have trouble with their social reciprocity.
But they're presenting with what looks like oppositional behavior. That child may be sensory
overloaded and have challenges processing sensory information and therefore becomes
overwhelmed and dysregulated and oppositional. The list goes on. The point is, is like when
I see a child with oppositional behavior and a family says,
oh, well, someone told us it was ODD. I'm like, now what?
I want to come actually right back to that. I don't know what fraction of kids are getting that type of
insight and attention, but my concern would be not enough. My concern would be that we're just in a
world of ever expanding labels and codes and the so what is missing, when, of course,
there isn't really a field of medicine in which the so what
matters more.
If you think about this person has hypertension,
hyperlipidemia, insulin resistance,
it's important to understand why.
But at a minimum, we have great treatments
if we don't know the why.
If at the end of the day, it's just deemed essential hypertension, we have no clue why,
worst case scenario, we can put you on medication. If weight loss isn't enough to reduce your
blood pressure and fix your insulin resistance, at least we've got medications that work really
well. But a lot of people would be hesitant to give their kids medication here. I want
to talk, of course, about this in length, which is all the more reason why, boy, if you don't understand why this kid has oppositional
defiant disorder, because if it's like sensory overload, it's a totally different treatment
path than if it's anxiety. I agree. And so this is one of the challenging things about my field.
And again, I'm going to come back to my boxes. I see a family and I'm actually pretty transparent with the families
I work with regarding that we don't know everything. I am really honest with them and
transparent because they're like, doctor, what is the diagnosis? And the thing is, as families,
they want to find a diagnosis because it helps. It's scary when you don't know what's happening.
But I really walk them through that there are these labels and diagnoses but the
risk is that they can see someone in my field and they do testing and you give a
diagnosis. Like I have kids they come with a report this child has ODD and
like okay well what does that mean? What are we gonna do about it? And so the why
is so so very important with again comes back to how do we create treatment
plans?
And it comes back to, again, like I said, you've met one child with ODD, you've met
one child with ODD.
And ODD to me means actually I don't even know what to do with that.
There's no treatment for ODD.
But however, if I know if the child has impulsivity, I can treat that.
If the child has social difficulties, okay, I know what kind of treatment plan to create there.
If the child's anxious,
I know what type of therapies to give.
So it's really important to think about the why.
It was actually one of the things
when I left the traditional medical model
and started my clinic,
one of the things that I really noticed
when I was making that transition,
and one of the things I wanted to remember
when I started to work with families in my clinic was that it's not just about the diagnosis,
it's the journey afterwards. And it's really about personalized care. And you can make
such a big difference in child development, human well-being by really understanding that
specific child. And unfortunately, sometimes when you're on the treadmill
in a medical model, it's really hard to have the time
to really get to know a child.
And I felt like I was, you have autism,
here's a list of 15 recommendations, good luck.
And you have ADHD, here's a list of 15 recommendations,
good luck, without really getting to know the why
behind that child's behavior.
Yeah, and I'm trying to think about how you compare this to adult psychiatry, right?
Where psychologists and psychiatrists who really help people
tend to focus less on their DSM-5, in this case, diagnosis.
They use that. If there's a diagnosis there, we should know what it is.
And it paints the contours of what we think about.
But as my friend Paul Conti always talks about, he's like, if you don't know their story,
you can't really help them. Now, that doesn't mean that knowing their story precludes using pharmacologic
agents when appropriate.
But what it means is you have to really understand the root.
Is this a response to trauma?
Is this a response to an underlying biologic condition?
And again, I feel like based on the little bit I know here,
adults seem to have more access to that kind
of mental healthcare than children do.
Is that a misperception on my part?
No, I agree, I agree.
I don't think we've done enough in pediatrics in this area,
but I agree you have to know the story
and understand the whole child.
And so one thing about developmental behavioral pediatrics, which by the
way, is a very young specialty.
You were the first person at Stanford in that group.
You created the group.
So developmental behavioral pediatrics was only recognized as a subspecialty
by the American board of pediatrics in 1999.
So it's a very young specialty.
But a key thing about this field is it's what we call
a biopsychosocial specialty.
And so what that means is we think about the biology,
the genetics, the brain, the biology, the medication,
we think about the biology.
The psycho part is the mental health piece.
So it's the idea of to support child development
and behavior, you need to consider the physical wellbeing
as well as the mental wellbeing.
And then the social piece is the fact
that we don't live in isolation.
We live in communities, we live in dynamics.
And in order to help kids with their development
and behavior, and what better way to promote human wellbeing and health than to start early on and impact child development and behavior. And what better way to promote human wellbeing and health
than to start early on and impact child development
and behavior and self-esteem and learning?
The way to do it is you not only think about the biology,
you think about the mental health,
and you think about the social,
which is about family dynamics, parenting,
school and education.
This is key. This is the bridge between education
and medical health, which honestly is hard to do in the traditional medical model, bridging
to education, but it is really, really important. That's where our kids are learning and developing
and growing and exposed to experiences. And so DBP looks at that whole picture. And I
really believe that that is the way to support child development and
behavior, whether there's a diagnosis or not.
Let's talk a little bit about your journey. You got to Stanford in 04.
Yeah. My husband got there in 04. I was there in 05.
So I did my DBP training at the hospital for sick children in Toronto.
So I'm Canadian trained trained at SickKids,
an incredible place to train with volume of cases
and complexity of cases, so it was a fantastic place.
Yeah, probably one of the three largest
children's hospitals in the world, right?
Yeah, it is, it is a fantastic place to train.
And so I did pediatrics, pediatric neurology
and developmental behavioral pediatrics there.
My interests and passions were all these genetics,
the human brain, developing human, neuroplasticity. I did a lot of research in neuroplasticity.
And then 20 years ago, moved to California in the Bay Area and took a job at Stanford.
But the field of DPP was brand new. So as I said, like it is just starting out. So they
did not have a developmental behavioral pediatrician yet at Stanford.
So I was the first there.
After me, they hired an incredible developmental pediatrician by the name of Heidi Feldman,
who then created the division of DBP at Stanford.
And she's still there and they have a fantastic group there now.
But I arrived, there was nobody else.
I was at Stanford for a number of years and did research,
clinical work, as well as medical education teaching.
Then after that, I focused on the clinical piece and went to
a large clinical organization to clinical work.
But then 10 years ago in 2014,
decided to leave the traditional model and
start my own multidisciplinary clinic.
Tell me a little bit more about why.
What was happening prior to 2014 that you didn't enjoy?
I felt that I could help my families and patients
more and or differently.
I wanted to make an impact.
That's one of my passions is always to make a difference.
And I felt that I was a little bit stuck in the model
and it's just the medical model.
There's so many good things about it,
but to help the families the way I wanted to
with my values, which I can describe,
I needed to leave.
And what did I value?
So one, I believe in promoting health and wellbeing,
and that's all about DBP, development of behavior.
It's about promoting health.
Where medical centers have been in the past, primarily focused on treating disease. So
that was one thing. Two, I really believe in multidisciplinary teams and really
having an integrated team in this area as I described. Understanding the whole
child requires not just a physician, requires therapists, psychologists,
teachers,
different types of professionals.
And I really believe that to make a difference,
those professionals have to be integrated.
If you want to touch down,
all the players need to be reading the same playbook.
And so I felt like a lot of the families I was seeing,
they would come see me in the medical center, the doctor,
but there was the school and there was the therapist
and we had all
these different silos. I really believed I needed to bring the silos together.
Another thing is I believe in community collaboration. So that's actually the bridge to education
and that's actually really hard to do. In a standard medical model is to really have
collaboration with the schools. So now I do school observations. I go to IEP meetings.
I work with teachers in classrooms because I know that to move the needle with the school. So now I do school observations. I go to IEP meetings. I work with teachers in
classrooms because I know that to move the needle with the patients I see, I need to do that.
You need to see what the kids do.
I need to see what they look like at school. And then I believe that the family is the patient,
not just the child. If I am going to make a difference in a child's life, I work with the
parents a lot. It's amazing how powerful parenting can be
and training parents.
And again, this is the social piece, the dynamics.
Understanding the whole family situation
is really important to make a difference in a child.
And then lastly, I believe I love learning
and being innovative and thinking outside the box.
And so I decided to set something up
where I can continue to like ask questions
and challenge the system and try to make it better.
So tell me about your team.
You said you have 25 people on the team.
So we have a few different programs.
We have a behavioral team where we focus mostly on kids
with autism.
However, probably about 20% of the kids
who work with our behavioral team
don't have a diagnosis of autism,
but do benefit from behavioral therapy,
social skill groups, parent training
that focuses on behavioral models.
We have a mental health therapy team
that supports kids and teenagers with anxiety, depression.
So we offer different types of therapy for that,
mood,
dysregulation, ADHD. We have psychologists who do testing for diagnostic assessment,
and then we have a medical team. But it's not just giving medicines. I do prescribe
medicines. But again, it's like that is a portion of what I do. I look at the whole
child and it's really understanding the therapies,
the parenting, the school piece,
and medication when it's important and can help.
So there's something called ABA,
remind me what it stands for.
Applied behavioral analysis.
Okay, it seems to be a somewhat polarizing topic
in the field of autism therapy.
Maybe describe what ABA is
and explain perhaps
why it's so polarizing.
Yeah, so ABA means a million things these days
and it just like autism means so much as well.
So ABA is a behavioral intervention
that traditionally has been used with kids with autism.
It is about taking a skill and breaking it down
into smaller sets, smaller subsets.
Traditionally, it was very direct, adult-directed, repetitive, working on a small skill.
All these small skills add up to a bigger skill.
What's an example?
So, an example would be, oh, you put me on the spot and I got to think of an example.
No, that's really good.
Okay, let's think of something. It might be something to do with greeting someone.
Okay, appropriate greeting. And appropriate greeting would be integrating verbal as well
as eye contact, as well as maybe turning your body towards the person. So when you greet
them, when you meet a new person. And so for someone with significant autism,
that's difficult and they need to learn how to turn their body
and make the eye contact and do the vocalization
and how to integrate that.
So for that skill, you'd work on the different subsets.
And so you might be first working on,
if you want to greet someone and acknowledge them,
you're first going to look at them and have that joint attention. So you're going to teach a child how to make
eye contact. Initially, we did ABA with something called discrete trial. That's why it's controversial.
Discrete trial, which is still used today, still can be very helpful when it's combined
with more naturalistic forms of ABA. Discrete trial would be about teaching a child to make eye contact and they get a reinforcer
every time.
So make eye contact, get a reinforcer, positive reinforcer.
So it's positive reinforcers.
It is a lot of repetition, practicing teaching a child a new skill.
And then you would add the other layers to it, the eye contact and then the greeting
and the vocalization, turn your body,
you would add all that together to come up
with this larger thing of how do you approach someone.
So discrete trial has been around for decades.
That's the part that's controversial
because people say, oh, this is very repetitive
and it's not based on relationships.
So over the years, there have been
more naturalistic ABA methods created.
Naturalistic in that it occurs more in a child's natural environment.
It is not just at a structured table where you and I are practicing eye contact.
Natural environment, also trying to understand the child's natural motivators.
So for example, it might happen at a park and it might happen, you know, that child
loves to be on the swing.
So rather than sitting at a table and me saying like, make eye contact, here's your reinforcer,
make eye contact, here's your reinforcer.
Now we're at a park, this child wants to be pushed on the swing.
Well, we're going to help this child learn that if you want me to push you on the swing,
you got to look at me and somehow acknowledge me
so I go push you.
Otherwise, I don't know that you wanna be pushed
on the swing.
And so those are more naturalistic forms.
One of the most naturalistic forms
is something called Pivotal Response Treatment, PRT,
which is actually training the parents in these skills
because that's really what it's
about. It's not about whether this child can make eye contact with therapist A at the table.
It's about how does this child understand how to use eye contact, when it's appropriate
to use it, and the power of it in natural settings. And so when you train the parents how to do it,
then they can practice at the park,
at the coffee shop, on the playground, the parents.
So that is the most naturalistic form,
teaching the parents, this comes back to parents,
how powerful it is if you teach parents,
the parents work with the child in a natural setting
with natural motivators.
Are there limitations to treatment
in families
with single parents?
Yes.
When you said that, I'm thinking,
it's just a single parent.
It's time and resources and driving to therapies.
Again, it depends on how significantly impaired
your child is and how many therapies they need.
Yeah, and I'm just trying to understand
what the socioeconomic toll is.
So I guess think about that in multiple ways.
So what is the typical cost of therapy?
So how much of this cost is covered by insurance typically?
How much of this cost is embedded within the school program?
So obviously, I think an IEP is included if a kid's in public schools, correct?
Yeah.
If they qualify for IEPs.
Yeah.
But is ABA therapy or PRT or any of these things,
are they covered by insurance companies for kids?
They can be.
It depends on the state.
So how it's covered is different in different states.
I'm from California.
So in California, ABA is covered if you
have a diagnosis of autism.
That's where the diagnostic piece is important. So then it is covered if you have a diagnosis of autism. That's where the diagnostic piece is important.
So then it is covered.
And what about the impact of other siblings?
So is there anything that you've noticed
about the nuances around if a kid has an ASD diagnosis
and they have other siblings that don't have diagnoses
or they do and where they are in birth order
and trying to understand the overall family environment
and how it pertains to treatment.
Yeah, there's actually so many things you can say about that.
So I'll first start by saying that siblings of children
with autism are themselves at risk for either autism
or autism-like traits
or something called the broader autism phenotype.
They may actually not have autism,
but they may have a few traits of it
and or at risk for other developmental disabilities.
So kids who are siblings also at risk
for language delays, anxiety.
So already they have again, that predisposition,
that load to have some developmental differences.
So that's one.
And how much of that is based on the fact that this is a largely genetic condition and
if they're siblings, they share genetic traits, even if they don't have all of them.
And how much of that is the siblings develop those in response to anything from mimicking
the sibling with autism to responding in frustration
to the behaviors of the kid with autism.
There is a big genetic piece to this.
So they truly do have these conditions,
language delay, autism traits, ADHD.
It's very often you see a sibling
with one of those other conditions
and there's that genetic piece, but you're right.
There's a behavioral component,
coping component, anxiety component that may be related to family stress, attention seeking
behavior. At the same time, I also see the opposite. I also see many siblings who have
incredible empathy for people who are different because they have a sibling
who has a developmental disability.
Okay.
So going back to ABA, from hearing you write, I'm not hearing you say it's good or bad.
I'm hearing you say it's just another tool in my tool bag and it has elements of it that
are valuable if applied probably in the environment of the child.
So I do recommend it. It should be a part of a child's treatment plan.
The tricky part is you want it done with people who are well trained,
who understand autism, who understand behavioral therapy well.
That's the why it's sometimes controversial is because there is such a huge demand for therapy for kids with autism
because the numbers are so high. It's hard to find enough people to provide therapy. It's also it's an industry.
And there's people who take jobs in this industry who actually are not well trained or well supervised or really understand the nuances.
Because if you know one child with autism,
you know one child with autism.
And if you're just following a recipe,
you might run into people, therapists,
who are not making a huge difference
and are not that helpful.
But I do offer it, I do recommend it.
What is the current size of the autism treatment industry and how does it compare to what it
looked like 20 years ago?
In other words, has it grown commensurate with the increase in the prevalence or is
there a greater burden on the per capita therapist today?
There's a burden.
I don't know the exact numbers, but it's grown.
But because it's growing, it's scaling.
And when you scale.
You dilute.
Yeah, you run into issues with quality when you scale.
So it's hard, but that's the thing.
How do we keep up?
So what do you say to a parent who's listening to us,
who's trying to navigate this for their child,
and they don't live in the Bay Area so
they don't get to come and see you. What questions are they asking? What are they
trying to do to find the best care for their kids regardless of where they lie
on these spectrums of anxiety ADHD or the various levels of ASD? So what my
advice would be for them would be
start with your pediatrician.
You start with your pediatrician,
but you need to find, your hope is with the pediatrician
that they are able to connect you to resources
and the network because you really need to find a team.
It's finding a team.
How likely is that?
It's hard.
Yeah, if you don't live in Boston or San Francisco
or the major cities, I'm guessing that this
multidisciplinary approach does not exist.
No, it's not easy to find.
So what are the options then?
What's the next best thing?
Yeah, you try to create your team.
But the thing is, I talk to families all the time.
This is so stressful for a parent
who's in a situation like this,
because they don't know anything about this.
They could be highly educated.
And there were type of families who actually,
if you speak a different language
and don't have higher education, this is a disaster.
But even for families who are well-educated,
trying to understand and quarterback this,
basically you need a quarterback to help you decide,
is this ABA helpful or not?
Should I be focused on speech and language therapy
or ABA therapy right now?
What should I be advocating for at my IEP meetings?
You really need someone to help you with that roadmap.
So we need to help families more with that.
I think of myself as a sherpa sometimes, guiding people along this journey, and it's the roadmap.
Every year we pivot and turn.
Where should we spend more time?
Is it in social skill groups?
Is it speech therapy?
What should we be asking for?
And so your question is like, yeah, this is hard to find.
And so if you can't find it, you're looking for somebody.
It may not be a doctor.
It might end up being a really good ABA therapist
or a psychologist in your community
who can help connect you.
There are state programs.
What is a parent asking when they meet a provider
to figure out, is this going to be a good fit?
I mean, obviously one option is just ask nothing
and wait and see how it pans out.
And in six months, ask yourself the question, is my kid doing better today than they were six months ago? But if you, as a parent, had the chance to meet several providers, so the, hey, look,
I happen to be lucky. I live in a city. There's three ABA providers here. I'm going to go and
interact with each of them. What could I, as a parent, do to understand where should I go first?
Which of these three should I pick?
What are the clues that tell me this person
is gonna have a higher probability of success?
So one thing is that you make sure
that they have the philosophy that one size does not fit all.
So that is key, is that this person needs
to understand personalized care and that they don't just give the same treatment recommendation, same thing to every single child.
It's not black and white. So you need to make sure that that provider is flexible in their thinking and their treatment approach so that they can provide individualized care as one.
so that they can provide individualized care as one. Two would be that they would be proactive
in helping you create some sort of team. So it may not be a team like I have under one roof, but they're open to the idea of collaboration meetings with the child's speech therapist or teacher. So someone who is open to it but will also be proactive
in arranging collaboration meetings maybe once a season. Three would be I think someone who has
skills in I mentioned the parent training piece. I think that's a really important piece. It's not just parent education. It actually is
parent training because I've seen that really make a difference. I think that's a great list.
I'm thinking about this through the lens of how do you scale what you're doing? And there's two
ways to do it. One is you just keep replicating a model that looks just like yours. So really big
multidisciplinary model, but that can only be
supported in a certain geography.
I mean, to have a team at the size of yours, you're not going to be able
to put that in every town.
And yet I think it seems unlikely that this is a condition that
discriminates by geography.
And therefore there's got to be half the kids in this country that have any of
these conditions are going to be in areas where they're never going to have
large turnkey,
multidisciplinary offerings at their disposal.
So their parents are going to have to do sort of the heavy lifting.
And unlike cancer, so if a child gets cancer,
a parent and family can go to another city for treatment.
If you happen to live in Austin, Texas,
when your kid gets a certain type of cancer, but Boston Children's Hospital,
or pick your favorite city
that has the greatest center for that.
It's not an unreasonable thing
to potentially go there for treatment,
but this is not something you're gonna go and do
in another city.
It has to be an integration into your life where you are.
Yeah, this is the journey.
This isn't a quick thing.
This is years.
This is a journey.
And the whole point is to have it integrated
and generalized in the child's life.
We were just talking how ABA in some structured clinic,
that's not our goal.
The goal is to have a child showing us these skills
in real life, in their real life, in their classroom.
What percentage of the children that present
to your clinic with a diagnosis of ADHD, plus or minus anxiety,
require pharmacotherapy in your clinic, in your experience?
Before I answer that, I'm just gonna emphasize.
So kids who come to my clinic with ADHD
often come to me, not always, but often come to me
because it was a little bit more complicated than straightforward.
Right, there's a selection bias into your clinic.
If this were straightforward, they wouldn't be coming to you.
Yes, if it was straightforward, hopefully their pediatrician can manage it.
Okay, yeah, makes sense.
Yeah, but still, the percent of kids who are treated with medication
depends on the age of the child and the severity of the ADHD.
So younger kids in my clinic,
I will use behavioral interventions first.
Define young, what is that cutoff for you?
So I see preschoolers who come to me
because they've been asked to leave multiple preschools
because they are hyperactive.
And in that preschool years,
although you could technically make the
diagnosis, I share with the family that we're probably going down this path.
Whatever we're going to call this in the next couple years, let's start working
towards helping your child build skills to regulate, manage their hyperactivity,
manage their impulsivity. So we start with first-line treatment for ADHD in
kids under six is behavioral parent
training. So that's first. So under six, it's behavioral parent training. We do that
first and try to get that to help. We may or may not need to add a medication. The
guideline for six and older first-line treatment is medication plus behavioral
parent training. And so medication makes a big difference.
Medication can be very, very helpful.
And I read the family, where they are at on this journey,
and their family values,
and how they're processing the information.
And I listen to their questions and concerns,
and I build trust.
And so some families are ready to start medication right away.
Other families have questions.
I work at developing a relationship with that family, answering their questions.
And most often, we do move towards medication because we know it helps.
Most of them say, I wish I started sooner.
I want to dwell on this point, Trina, because I have to believe there are a lot of people
listening to us, maybe not so much because I don't think my audience is quite where I'm
going, but there are going to be people who understandably come at this and are really
judgmental. And their narrative is going to be the following. These goddamn preschools
trying to tell me a kid has ADHD, maybe it's because the preschool is just overcrowded
and the people who work at the preschool
are too lazy to actually let these kids play.
Let kids be kids.
There's nothing wrong with a kid that's hyperactive.
You just got to give him more to do,
blah, blah, blah, blah, blah, blah.
This is sacrilege that we would ever
give a child medication just because they're hyperactive.
So that's a narrative.
Yeah, for sure.
Now, again, I don't think a lot of people,
if they're sophisticated, subscribe to that,
because I think a person who's sophisticated
would hopefully not make a judgment like that
without understanding the fact base a little bit more.
Would you agree that the best argument against that logic,
which is not an argument that says every kid should
be on medication, it's an argument that
says you have to weigh the pros and the cons of
being unmedicated and what the impact on your education is going to be and the long-term
success you're going to have as an adult, as a well-adjusted adult versus the accepted risks
of any medication and the potential upside it has towards allowing that child to learn.
Because again, I always like this framework you have, which is you bring it back to what
is the adaptation of the condition.
What is the adaptation of the phenotype?
If it is disruptive, if this is a difference in a child's education, if this is a difference
between a kid going to college and not, if we believe that matters anymore, or being successful in their career or not,
or having pro-social relationships versus not,
then maybe we accept the risks of medication.
So maybe you can articulate that more eloquently
if you have a different view,
but that's kind of how I like to think about things
that seem at the surface absurd.
I love all the points you brought up,
because it is a risk benefit ratio that
you have to consider.
You have to consider there's risks in everything we do.
There's risks in all medications.
There's risks in everything.
So you have to consider both risks and benefits.
When I'm working with a family, I talk to them about the research and we actually
have a lot of research around safety and long-term
outcome and the outcome of individuals with ADHD who are left untreated. But actually
more importantly, I get to know their child though. So this thing, as I get to know them,
I share with them the research, the safety research, all sorts of information about the
medication. But what's really important, so this is the idea about me going and watching the child
in class, me talking to the teachers, getting to know that family more, really understanding.
They come to see me for a reason.
If things were great, they wouldn't come to see me.
They've come to see me for a reason.
And even though the school, maybe initially was the school who said, your little guy is
way too busy and you need to see a doctor about this.
But when I get to know the family, I find out,
well, actually dinner is really stressful
and bedtime routine's really stressful.
Everyone's in tears in the morning.
And so I get to know them and it's actually
that personal part that helps them understand their child
and that come back to self-esteem and interpersonal.
Your kid is not a statistic to you.
Yes, that's exactly it.
Sometimes we don't use medication.
I am the first to say, if your child doesn't need it,
we're not gonna use it.
Although we know that medication
can make a really big difference.
I've discussed this on some previous podcasts.
So is Vyvanse still used?
Is Ritalin still used?
Is Focalin used?
I mean, what's in your toolkit in that world?
ADHD medicines, we're talking stimulants and non-stimulants. First-line treatment considered
is stimulants. Within stimulants, we have two different medications. We have one called
methylphenidate and one called amphetamine. Methylphenidate, we have many brands. That's
the Ritalin, which has been around since I believe the 1950s.
We've got Ritalin, we've got Focalin, we've got Concerta, we have
lots of different methylphenidates.
What was the other one after Focalin?
Concerta.
And there's many more brands.
They're all different brands.
And how do they differ?
Are they differing in pharmacokinetics and half-life?
What separates those three drugs, for example?
How the medication's released. Okay. So it's just a timing of release in pharmacokinetics and half-life what separates those three drugs, for example? How the medication's released.
Okay, so it's just a timing of release
in pharmacokinetics. Timing of release
and the mechanism of release.
But it's literally the same molecule.
Yeah, it's the same active ingredient, methylphenidate,
but it's interesting, kids respond differently
to the different medications, the brands,
because the release mechanisms are different.
So some kids are sensitive.
So in other words, if a kid comes in and you try one of these
and you don't get the response you want,
you don't necessarily abort the entire molecule,
you might switch to a different formulation.
And I only say this because I can't tell you
the number of parents I have spoken with who have said,
my kid was on Ritalin, it was a disaster.
When they switched to Focalin,
it got so much better.
Yeah, that's exactly right.
And there's no science, unfortunately,
to tell us which one's going to work for your child.
So you have to basically try a few.
OK.
And then the other one you said was just straight amphetamine?
Amphetamine, so that's Adderall, which
has been around since the 1930s.
And then there's, you mentioned Vyvanse, Vyvanse, Dexedrine.
So there's medications in that group.
And again, same deal.
The difference between Vyvanse and Adderall is release and kinetics.
Yes.
Vyvanse is actually called a prodrug.
It's actually just got a little molecule attached to it that needs to be cleaved
in order for it to work, but they're all the same.
Again, it's very counterintuitive to people
why you take a hyperactive kit and give them a stimulant.
Do you want to just give the brief overview
of why that works?
So the way these medications work
is they increase dopamine and norepinephrine
in the synapses between the brain cells
in the parts of our brain
that are important for executive functioning, attention, inhibiting impulses.
So the part of the brain, the prefrontal lobes, where that all the executive
functioning attention happens, our brain cells have to communicate in order to
see that behavior, attention. These medications, although they're called stimulants, what they do is they increase the levels of dopamine and norepinephrine in these synapses, the gap between the neurons,
and they improve the electrical activity and communication between brain cells.
What are the most common side effects you caution parents about with these drugs?
So the side effects can be annoying, but they're not life threatening.
The most common one is decreased appetite at lunchtime if you're taking a medication
that lasts the whole day.
So there's medications that last three or four hours, which we used to use a lot a couple
decades ago when I first started doing this.
But about 20 years ago, we started using extended release a lot. A couple decades ago when I first started doing this, but about 20 years ago we started using extended release a lot more. And so extended release is that it lasts eight hours or 10 hours
for the day or 12 hours a day. And so those medications impact your appetite at lunch,
breakfast and dinner are usually fine. There's this chance that it impacts sleep onset, which
is really important because sleep is super important kids, but
it can impact sleep onset.
If that's a problem, we adjust the timing of the medication in the morning.
These are generally single administration first thing in the morning drugs, I assume.
Yeah.
They're really easy to use because you take it in the morning, they start to work, the
extended release will start to work within an hour, and then they're working for the majority of the day. Then they come out of your system
at the end of the day. And so tomorrow, unless you give the medication to your child again,
it's like they've never been on it. It's like they've never been on it. What are the differences
then between the Ritalin class and the Adderall class. Do you have any suspicion one way or the other
as to which is gonna be more effective
if you were to prescribe Fokalin versus Vivance?
Yeah, so when I first meet a young child,
I generally start with methylphenidate,
and that's what most clinicians do with little kids.
And the reason for that is that the meta-analyses show
that kids tolerate methylphenidate a
tiny bit better than amphetamine, although amphetamine is a little bit more bang for
your buck when you're treating the symptoms.
That being said, no kid is a statistic.
Every kid's different.
So I have just as many kids on Adderall as I have on RedLent.
Interesting.
Yeah.
So I use every single brand out there,
but I start with methylphenidate
because it's shown to be tolerated better.
You mentioned a second ago that if your kid's been
on this drug every day for a year
and experienced all these benefits
and then they come off the drug,
it's like they were never on the drug.
Does that suggest that in the,
I hate to use the description this way,
but I think you understand me, in the drugged state, you don't get to do
behavioral therapies that also have a positive impact
independent of the drug, such that if the drug comes off,
the phenotype is changing.
Is that not to be expected?
I want kids to be actually practicing skills
when they're on the medication.
Yeah, in theory, they should be able to do a better job. It should be easier for them to practice the're on the medication. Yeah, in theory, they should be able to do a better job.
It should be easier for them to practice the skills
on the medication.
Yes, so let me say a couple things.
So in theory, when they're on the medication,
it's easier for them to practice paying attention,
controlling your impulses, controlling your hyperactivity.
In addition to that, this is where the behavioral
parent training part comes in, which is actually now
a recommendation
that every family should have, should be doing.
Training specifically for family, not just child.
Yes.
Amazing how powerful parents can be in modifying the behavior of their child.
So parents undergo the training and the child might undergo some sort of therapy, regulation
group.
When they're older, they undergo executive functioning coaching to learn organization
and planning.
So what it is, is you are trying to develop these skills.
So when we practice something over and over and over again, not only we develop new behavioral
strategies, behavioral patterns, new habits, we actually positively
impact the developing brain. That's neuroplasticity, which is one of my passions is neuroplasticity,
but we impact the brain through experience and our behaviors. So when a child has ADHD,
it is a wonderful time to practice new skills, and you actually impact
neural networks.
So does that mean that you're telling parents, or at least holding out a hope, that, hey,
your kid is seven or eight years old, we're going to put them on Ritalin, this might not
be a lifetime thing.
Do you give them that hope, or do you not commit to anything one way or the other?
I don't commit.
I get asked that question all the time
for the types of medications I put patients on.
If I put patients on a lipid-lowering medication,
generally their first question once you get through
the why should I be on this
and what are the side effects, et cetera,
is am I gonna be on this for life?
Yeah.
So what I tell families, I have no crystal ball,
I can't commit, but I do have many,
many patients who do eventually come off medication. Some of them, maybe they shouldn't
have come off medication, they actually should stay on their medication, but I have many patients
who come off and do really well. Is it naive to think that because ADHD primarily impacts the
prefrontal cortex that you would see at least a subset of people
when they reach their late teens as girls and mid-20s as boys when they reach maturation
of that part of the brain that at least a subset of them should be able to develop potentially
the skills to overcome the genetic component of this or is that not necessarily correlated? No, I see a lot of kids who do find strategies to compensate and who do no longer need their
medication as teenagers or young adults. I have a lot of kids who are like that.
But I think it's really important that they start early developing strategies and new behaviors.
I think that is really important, strengthening those neural networks.
So what about the non-stimulant class of drugs here?
There are non-stimulants that we use. One is called Stratera, which also acts on norepinephrine and
increasing the norepinephrine levels in the synapses. And then there's a couple of old
blood pressure medications we use. One's
called guanfacine, the other one's clonidine. Those are alpha-2 agonists. So they act in
a different way with closing channels in the postsynaptic neurons. So it's a different
mechanism. But all of those medications also help with the communication between neurons
in the attention center in the
brain. The difference is the non-stimulants have to be taken every day
unlike the stimulants in order to for them to work. So meaning they're taken
every day and you need a steady state in your body.
Yeah. Do you ever mix these two or is it one or the other?
Oh you mix them often. You do. And so often they do not have the side effects
with the poor appetite.
And sometimes they can be really good with kids who have some emotional dysregulation,
impulsive emotions.
So we'll often use them with a child who has a little bit of that irritability, emotional
dysregulation.
And sometimes we're using both the stimulant and the non-stimulant at the same time. Are there any medications that typically show up
in kids with autism, but without ADHD?
So let's just say kids with autism,
plus or minus anxiety,
what is the role of pharmacotherapy?
There's no medication that treats
the core symptoms of autism.
The core symptoms don't require medication.
It's therapy.
We use medication in kids with autism to treat target behaviors and symptoms.
So we use medication for the symptoms, no matter the label.
So whether or not the child with autism has ADHD or not, we still may use an ADHD medicine.
If they're hyperactive or impulsive,
we still may use it, whether or not the label's there.
Got it, so you don't need the diagnosis to decide.
In other words, there are kids with autism
that are going to be on medications,
and it's really just a function of the symptom.
Correct, so the target symptoms we usually treat,
it is the attention hyperactivity impulsivity,
where we'll be using the stimulants or the challenges with emotional regulation,
where we'll use a non-stimulant. We may use an anxiety medicine, so a selective serotonin
reuptake inhibitor, SSRIs such as Prozac or Zoloft, we may use that for anxious feelings. We also use that sometimes
for rigidity. So kids with autism who struggle with rigidity and transitions, it's often
anxiety related. So we'll use the SSRIs there. And then kids who have really aggressive behaviors
and may injure themselves, then we are talking about atypical antipsychotics.
I'll just share with you, I don't use a lot of those myself. At that point,
if the child is having those difficulties, I often working with a psychiatrist.
Again, I think it's just got to be so hard for parents to potentially stomach putting
children on psychiatric medication. But what you said earlier is sort of interesting, right?
Which is most of them are coming back after saying,
I wish we did this sooner.
Which I suppose would be the most affirming thing
you could ever hear in that situation.
What are the things that they typically notice
when they come back to you and say that?
And how long does it typically take?
Well, with the stimulants, it can be pretty quick.
They're like, we're glad we did this
and this is making a big difference.
The impact of stimulants is right away.
You see the benefits right away.
What do the kids say?
Let's assume a child is old enough.
So let's assume you're working with a seven-year-old
or a 12-year-old who can articulate their feelings.
What do they come back and say to you?
They share with me that it helps them with their focus,
they feel more successful at school,
and they share side effects.
What other side effects do they complain of
besides appetite suppression?
So I will sometimes have high school students
who tell me that they feel less social and funny
when they're taking their ADHD medicine.
So they're a little less impulsive and spontaneous.
And so we talk about that.
And I listen because it doesn't have to be black and white,
all or nothing.
Our goal isn't to make someone 100% focused,
100% of the time.
It's like, okay, so we want to improve focus.
None of us are focused completely all the time. It's like, okay, so we want to improve focus. None of us are focused completely all the time. So when I have people come to me with side effects, I'm
like, okay, well probably the dose is wrong or maybe we should change to a
different medication. This one particular medication may not be the right match
for you, so we should need to change it and find one with less side effects. So I
think that the key thing is having a relationship between the doctor and the patient,
lots of communication, and the idea that if the patient is experiencing side effects,
that they tell somebody so that you can adjust.
You change the dose, you change the timing, you change the brand.
It's just weighing pros and cons.
You hear this phrase from time to time,
which is that kids with autism have superpowers.
We might think of an example like, okay,
well, Dustin Hoffman's character in Rain Man,
I mean, obviously highly, highly impaired for most of life,
but clearly had a superpower.
He could count cards and toothpicks.
Obviously that's kind of the Hollywood version of that.
But is there truth to this idea
that kids with autism have superpowers
or is this something that you would put more brackets around
and say, well, sometimes those kids who are in class three
where they're really impaired,
maybe there's something there,
but it's a lot harder to see
than the kids in class one, for example.
It is.
So there is a difference class three versus class one for it's a lot harder to see than the kids in class one, for example. It is, so there is a difference class three
versus class one, for sure.
It's harder to see.
It's harder to see in class three.
Class one, a lot of superpowers.
Memory could be one of them.
Attention to detail, really good with remembering rules
and following routines or a set order of operations.
There's a lot of strengths with the kids in
class one.
There are a lot of famous people I won't name who have even talked about themselves as having
mild forms of autism, Asperger's.
So you would almost think that it's predisposing them to some of their greatness in the fields
that they're in, often very technical fields.
Is that consistent with what you see in the children?
Yes, it is.
A more of a predisposition towards engineering, technical fields, STEM in general.
Yeah, definitely.
With that profile, like I said, I called it a learning profile, a thinking profile.
And so things where you need a little bit more inferring, there's
abstract inferring or the social piece.
more in furring, there's abstract in furring or the social piece. It may not be their strength, but where you need to dive deep into some details, persevere, stick with something,
hyper-focus on that, you do really well. And so a lot of people, once they find their passion
as a young adult, if they find a career where they can actually dive in,
they can dive deep and do really, really well.
What do you think is kind of the most important thing
you want people to understand about anxiety,
autism, ADHD, that you think is either misunderstood
or not understood at all?
I think that there's a lot of overlap.
I think people sometimes get stuck on the label and name
and although there's so many positive things,
we're talking about the diagnosis you need
to get resources, I think I get concerned
that people get stuck on a name
and don't actually see the person beneath that name.
I think that's my key thing.
I've had so many experiences where families are like,
but they told me it's autism, it has to be autism.
If you think otherwise, what's wrong with the system?
And this is hard,
because in this field, there's a lot of gray.
And so I think that's what it's about.
There's gray, it's a moving target.
We've changed the names and the definitions multiple times
the last couple of decades,
they probably are gonna change again.
So it's for us to be flexible with our thinking
that the definitions may change again,
but there are these learning styles.
And so if you've met one person with one of these names,
you've met one person, and it's really important
to understand that person in order to help them
with leveraging their strengths,
and then understanding what kinds of gaps
you wanna like fill, and what kinds of skills
you wanna work on.
Trina, this has been really, really fascinating.
I guess my only frustration in this discussion is the concern that there aren't enough people
like you and your colleagues out there to match what is very likely the psychological
burden of these conditions across kids today.
I'm only speaking to the United States, so I think if you were to think about this globally,
I won't attempt to make a statement because I simply don't understand what the prevalence is or what the resources are.
But I think we could probably say in the United States that there are far more children and
families that are impacted by the AAA than there are multidisciplinary teams that can
take care of them.
Are you optimistic that 10 years from now, this model is going to be different?
There are going to be more people that are going to want to come to practice this in the way?
Where is the long pole in the tent? Is it getting more people to simply go into these fields?
Is it a better payer reimbursement structure to incentivize more people around a multidisciplinary
approach? What is it going to take in 10 years to close the gap between demand
and supply? I think it's both those things you mentioned. It is definitely training more people
and trying to think about how to use and recruit people who are also going to support, for example,
the developmental behavioral pediatrician or the psychiatrist or the psychologist. For example, we need more DBPs, but we also need then like more nurse practitioners or other allied
professionals who can support the team. So it's being creative and innovative with how you create
the teams and find enough people to be on these teams. But then how it's reimbursed and making
sure there's access to these teams will be
really important. I really believe in the bridge to education as well, which is not something that
is part of an insurance model.
Well, it's funny you say that. I was literally just about to ask you the following question,
which dovetails into that, which is, are we thinking about this the wrong way? Are we thinking about
this as something that should be done through
healthcare when maybe this should be done through education? If you had unlimited budget,
one way or the other, this has got to get paid for. It's either going to get paid through health
insurance or it's going to get paid through systems in education. Do you think that the
burden is disproportionately on the healthcare system today and it should be a shared burden
with the education system? I'm not saying be a shared burden with the education system.
And I'm not saying that to be critical of the education system.
They would need the funding and the resources to do this.
But is that part of the issue is that you're always going to see these things manifested
in the education system, and that's where you're going to get the most bang for your
buck when you address them.
I'm going to go back to the bridge, because it is, it's like the insurance,
they'll say that parts of this intervention are educational. So they're not responsible for it.
And then the educational people will say that this part is this medical thing. It's actually
not interfering with the classroom, but you need to realize to help that child move the needle,
you have to have both systems working and talking together
and collaborating together
if you really wanna move forward.
And so it's a totally different system,
but I really believe in bridging education,
mental health and medical,
if you wanna make an impact on child wellbeing and health.
I'm really hopeful that this message spreads and that we see more and more of this type
of integrative approach because it really makes sense.
So thank you so much for your time and appreciate you coming out here.
Thank you.
Thank you for listening to this week's episode of The Drive.
Head over to PeterAtiyaMD.com forward slash show notes if you want to dig deeper into this episode. You can also find me
on YouTube, Instagram and Twitter, all with the handle Peter Attia MD. You can also leave us review
on Apple podcasts or whatever podcast player you use. This podcast is for general informational
purposes only and does not constitute the practice of medicine, nursing or other professional health
care services, including the giving of medical, nursing, or other professional healthcare services,
including the giving of medical advice.
No doctor-patient relationship is formed.
The use of this information and the materials linked
to this podcast is at the user's own risk.
The content on this podcast is not intended
to be a substitute for professional medical advice,
diagnosis, or treatment.
Users should not disregard or delay
in obtaining medical advice
from any medical condition they have, and they should seek the assistance of their health care
professionals for any such conditions. Finally, I take all conflicts of interest very seriously.
For all of my disclosures and the companies I invest in or advise, please visit peteratiamd.com forward slash about where I keep an up-to-date and active list of all disclosures.