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- This is Laura Dedo with the Becker's Healthcare Podcast.
I'm thrilled today to be joined by Dr. Thomas peo,
medical director of UPMC community osteopathic in
Harrisburg, Pennsylvania.
Dr. PEOs, a pleasure to have you on the podcast today.
- Oh, thank you so much. It's a pleasure to be here.
- Now I'm looking forward to our discussion.
Um, and before we dive in though,
can you tell me a little bit more
about yourself and your background?
- Sure. I am a physician.
I've been practicing as a physician
for about 24 years now.
I started out my career as a family practitioner,
and about halfway through that time, I, uh,
became a hospitalist,
and I've been working for the last eight years
as the medical director at community osteopathic
and worked closely with my hospitalist team
and remain engaged in clinical care on a daily basis.
- Well, that's great to hear. And Dr.
Peno, you're part of the lost generation
of autistic US adults.
Can you tell us more about your journey to a diagnosis
and why so many adults have fallen through the cracks?
- Sure. Yeah.
So as your question, um, presupposes I was diagnosed
with autism and I was diagnosed later in life.
I was in my early fifties when I was diagnosed,
and my story is very similar to
a story told by many other late diagnosed autistic adults.
Um, in that I came to my diagnosis through my children,
um, when I was young.
Uh, the diagnostic criteria were different
than they are today.
So a person like me would not have qualified
for a diagnosis of autism.
Um, it wasn't
until 2013 when the DSM diagnostic criteria folded,
uh, diagnoses like Asperger's and autism
and pervasive developmental disorder all into one, uh,
broad category that, uh, people from my generation,
um, what is referred to in the autism literature
as the lost generation, um,
had an opportunity to be diagnosed.
And I think as we, as a society, uh, talk more about autism,
uh, we become more familiar with the traits
and the diagnostic criteria.
Um, we start to see it, uh, more and more.
And I can, I can, I can assure you that
that has been the case for me in my clinical life.
My diagnosis actually came as my oldest daughter was,
um, working her way through her own, um, struggles
and was diagnosed with OCD for a number of years.
And, uh, she was, uh, very intelligent, um,
young woman who, um, at some point began
to question her own diagnosis
and said to her counselor one day says, look, I
I just don't feel like this is me.
I don't think it describes me well, and I mentioned that
because of the, um, psychiatric
diagnoses that people tend to have on their way
to an autism diagnosis, OCD is is one
of the more common ones.
Um, she had been working hard doing everything
that the counselor was telling her to do.
And, and, and then finally the counselors came back to her
and said, gee, I wonder if we're dealing with autism here.
And I can tell you that she came home from that meeting
and started her own deep dive in the world of autism
and our lives,
our collective lives have never been the same since.
Um, it was just a year later that her sister was diagnosed.
And, and then the two of them were armed
with all this diagnostic information,
and they turned their attention towards me.
Um, I think like a lot of adults who have not been
around autism
and certainly didn't understand it deeply, I, you know,
offended them off or, you know, kind
of denied, uh, for months.
But they persisted. And I finally swallowed my pride
and carefully reviewed the diagnostic criteria,
and I said, you know, I think they're onto something.
I, um, sought, you know, a professional
evaluation, and indeed the diagnosis was concern,
uh, was confirmed.
Um, and it's really been a,
a fantastic journey.
I've learned so many things, um,
and so many ways that not only does this diagnosis, uh,
help me to bring clarity to me and to my life,
but also to help me be a better doctor and to,
and to see autistic traits in my patients and, uh,
and colleagues alike.
- Well, that's a fascinating, uh,
perspective that you have now.
And just so interesting to hear, um,
the way in which you came to your diagnosis
through your children,
and as you said, um, I can imagine others have had
that same experience as well, or,
or really, you know, could be transformative to understand
that about themselves.
How has your diagnosis changed your understanding
of yourself as well as your professional and personal life?
- Yeah. One of the things that is
unique about autistic people is this concept
of a spiky profile.
Um, if you think of just very generally speaking,
a non-autistic person being like a circle
and the profile of an autistic person being spiky,
those spikes are the special interests they represent, um,
deep and, and,
and recurring, uh, uh, topics that, that they,
um, Brent that brings joy
and, um, motivates them to learn more and to do more.
Um, which means that autistic people tend
to be exceptionally good at certain things.
Um, and then there are other areas where we tend
to need some support.
And the degree of that, of those, you know,
exceptional traits
and the degree of those areas of support is so variable.
It really is such a vast, uh, world, uh,
that autism represents.
But fortunately, I have
had a support structure in my life that I,
I really didn't appreciate until you know, much later.
And I think that support structure has been my wife
and my family and the people around me.
As I've learned more about autism, I've noticed that
that part of the reason I didn't realize, uh,
didn't appreciate it in myself is
because probably many
of my family members are also autistic.
And I, I just had a sense of normal, um,
that was probably more autistic than non-autistic.
So yeah, I've been able to be immersed in my profession,
you know, very young in life that I developed, you know,
passions for math and science and education.
And, you know, that led me off to medical school,
and I was very fortunate to have a chance
to become a physician and care for patients.
But seeing that spiky profile in myself has helped me to see
that same kind of spiky profile in my patients.
So, for example, you know, aren't they able to, uh,
pay their bills, um, executive functioning?
Can they schedule their own appointments?
Is it reasonable
or even fair for me to expect my patient to be able to
take on the, this level of independence in the future?
Just like we counsel patients
and their families of all sorts of neurologic issues,
autism is one of those areas where we can dig deep,
ask questions and find out about
what areas they may have support needs, uh, what areas, uh,
can they be independent?
Um, does this person need a social worker in their life?
Is there a family member who can be engaged?
And we can have a conversation about autistic traits
and how this, how this all works.
Um, or is, is this an individual
who really can be quite independent,
but just needs to have, um, some appreciation of their,
you know, enjoyment of, of, you know,
having a relatively small social circle and,
and, um, you know, managing their own day-to-day life.
- Uh, that's really interesting to hear,
and certainly such important points to think about
as you're caring for patients
and really for any doctor
to understand is they're looking at their patient's profile
and, and trying to create expectations
and a plan for the future.
I know you recently authored a paper on caring
for autistic adults in the inpatient setting.
What are some tips that you can share with our listeners?
How has your own journey
with autism helped shape your awareness of these strategies?
- Yeah, thank you. So the first point
that is so important for our listeners to appreciate is just
how common autism is.
Um, as of 2023, the CDC and the Autism
and Developmental Disabilities Monitoring Network reported
that the incidence is 2.7800000000000002%
of the population, or about one in 36 people.
There was another study done by Kaiser some years ago
where they looked at a sample of 1.6 million adults
who were diagnosed with autism,
and they found that only 0.095% of
that sample had been diagnosed.
What that means is
that autistic adults are 30 times less likely
to have a diagnosis than children, meaning
that there are over 7 million undiagnosed adults
in the United States who are autistic.
These numbers are staggering.
And the healthcare community, society at large, we need
to get better at recognizing autistic traits,
offering diagnostic clarity to autistic people
and matching up the support needs
that this vulnerable population has.
The second point that I would make is that being autistic is
a social determinant of health.
We know that autistic people have higher
rates of unemployment.
They're more likely to live with family members
or relatives, and they may have very
limited social connections.
We know that there's higher rates of diabetes, hypertension,
heart disease, and just generally speaking,
they're less likely to have their health needs met.
We know that there are higher rates of hearing loss,
autoimmune disease, sleep problems.
Sleep problems are, uh, extremely common.
Uh, so folks who are complaining of insomnia, could
that be an autistic trait.
Um, and we also see higher rates of mental illness
and substance use.
And in the end, the average life expectancy
of an autistic person is 16 years shorter than that
of the non-autistic population.
So we in the healthcare community have to first recognize
that this is more common than I think that we've, uh,
that we've appreciated in the past
that the implications are quite severe,
and that there is really a massive population
of people out there who have yet to be diagnosed
and who are in effect nurturing a disability
that they don't know about.
- That's such great perspective, you know,
and really puts things into a clear picture, especially
for people who may not understand, as you were saying,
you know, this is their diagnosis
or something that they're struggling through in their ways
that they can manage that or, or seek extra help,
but just haven't, it seems like
because, um, they didn't know that it's something that,
you know, um, they need to be thinking about or managing.
So from your perspective, how important is it
for leaders in the healthcare industry to advocate for
and accommodate these marginalized groups?
And can you share any examples from your role
as a medical director?
- Yeah, absolutely.
Um, I've been so gratified over the past couple of years
as I've done my own deep dive on autism
to see these autistic traits show up in
my patients in the hospital.
Um, I've had patients when I questioned them, uh,
revealed to me, um, issues around sensory, uh, intolerance.
Uh, I, I can remember specific examples of, you know,
asking about, you know, how is the sound level in your room?
And I remember one patient saying back to me that, you know,
I'm so glad you asked.
I can hear the nurses talking up
and down the hallway all day and all night.
Um, this individual had been struggling with a long history
of anxiety and sleep problems.
And I said, Hey, you know, hang on a second.
Lemme go get the sensory kit that we had put together, um,
about a year and a half ago as part of, you know,
an autism education program
that we were doing in our health system.
And into the room, I brought, uh, some headphones, just,
just some quieting earmuffs.
And I said, why don't you put these on? And she said, okay.
And the moment that she put them on, she smiled
and she looked at me
and she says, wow, that really feels nice.
And then I said, okay, well, how about the blinds?
Do you want me to lower them?
Well, we have blinds in all of our rooms,
but they don't, they're not blackout blinds.
So they let a fair amount of light in,
and I said, do you want to try these sunglasses?
And she put 'em on and she said, yeah, it's
so bright in here all the time.
I really appreciate having these.
And then I took one more step
and I said, how about this weighted blanket?
Do you want to try this? And she said, she was kind
of apprehensive in the beginning,
but then she allowed me to place it on her lap.
And, and she, she really just relaxed into these,
um, very simple interventions.
And what was so gratifying to me was
when I returned the following day,
she was asleep in her bedside chair with all
of the equipment on, and I, I just touched her very gently
and I stalled, startled her awake,
and she said, I, I slept, I slept
for several hours last night,
and it's the first time in years, and she was so grateful.
And we went back and we talked about, you know,
different ways that we can, you know, support and,
and certainly I don't want to give your listeners the
impression that, you know,
these simple interventions can solve all the problems of
that autistic people face, but,
but there are some very simple interventions
that healthcare systems can implement
and it can really make a big difference in the sensory
overload that is so common, uh,
for autistic patients in a healthcare setting.
- That's a fantastic example.
And, and certainly, you know, can make a big difference,
like you were saying for the experience, then ability
to get well, um, from, you know,
the health side of things too.
Dr. Peno, thank you so much
for joining us on the podcast today.
This has been a fascinating conversation.
I really appreciate you opening up
and sharing your own journey with us, as well
as the advice you, you've been able to provide
for other healthcare providers would be so meaningful, um,
for them and their patients going forward.
I appreciate this conversation
and I look forward to connecting with you again soon.
- Yeah, it was great talking to you,
and I really wish you all the best.