May 27, 2025 • 36 mins
The autism conversation in America is at a critical turning point. As public figures make sweeping statements about vaccines, research quality, and the capabilities of autistic individuals, our experts step in to separate fact from fiction with clarity and compassion.
Dr. Karen Lindgren and Dr. Cynthia Ripsin bring over 50 years of combined clinical experience to dismantle persistent myths—most notably the thoroughly debunked vaccine-autism connection that originated from a fraudulent 12-person study. They explain why studies of over two million children have conclusively found no link, yet misinformation continues to influence healthcare decisions.
The conversation dives into the remarkable diversity within autism, challenging simplistic characterizations that paint all autistic individuals with the same brush. From individuals requiring 24-hour support to those independently building careers and relationships, the spectrum defies easy generalizations. This variance extends to healthcare needs, where standard medical environments can create barriers through sensory overload, communication challenges, and rigid procedures.
Particularly enlightening is the discussion of "profound autism"—a term describing individuals with significant support needs who represent over 30% of the autistic population yet receive less than 6% of research attention.
The experts also unpack the reported five-fold increase in autism rates since 2000, explaining how improved screening, broader diagnostic criteria, and increased awareness—particularly among previously overlooked populations like girls and women—have dramatically shaped these statistics.
What emerges is a call for nuanced understanding, targeted research that addresses the full spectrum of needs, and healthcare systems designed with neurodiversity in mind. Rather than focusing on causes or cures, our experts advocate for practical improvements that enhance quality of life for autistic individuals and their families today.
Join us for this essential conversation that moves beyond headlines to explore what meaningful support really looks like for autistic individuals across their lifespan.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:03):
Welcome everyone to Boundless Abilities.
I'm your host, Scott Light.
So, to put it bluntly here,autism has been in the news a
lot these days.
Health and Human ServicesSecretary Robert Kennedy has
made statements both in hiscurrent role and as a private
citizen over the years aboutvaccines, about the quality of
autism, research and factorsthat have influenced the rise in
autism cases.
(00:23):
Here at Boundless, we want allforms of government and all
people to engage with us.
We welcome the added attentionand discussions from everyone
and we certainly welcomeincreased investments that
enable all of us to betterunderstand the disorder.
But it's also ourresponsibility to speak truth to
power on what we know aboutautism at this very moment and
(00:45):
to debunk myths withoutsquelching this vital discussion
.
Well, fortunately unfortunatelyfor you, our listeners I have
two experts here today to dojust that.
Dr Karen Lindgren is the chiefclinical officer at Bancroft.
She oversees healthcare andnursing services, the Applied
Behavior Analysis Center ofExcellence and quality assurance
across the organization.
(01:06):
As a licensed psychologist, shehas more than 25 years
experience in neuropsychologicalassessment and treatment of
brain injury and neurologicalimpairment.
Dr Lengren, welcome to you,thank you so much Scott Glad to
be here.
Dr Cindy Ripson is here as well.
She's been on a previouspodcast too.
She's the medical director ofBoundless Health board-certified
family physician with over 25years experience caring for
(01:30):
patients of all ages.
As our medical director, drRipson is responsible for
providing leadership anddirection on overall goals, plus
provide best-in-class healthcare to our patients.
Welcome, dr Ripson.
Speaker 3 (01:42):
Thank you, really glad to be here, scott.
Speaker 1 (01:44):
So let's start with how I began, in that autism is
really part of the publicdiscussion right now.
So let me try to paint apicture here with my first
question.
If you both had a piece ofpaper with a line down the
middle and let's say the headeron the left reads positives and
the header on the right at thetop reads your concerns, how
would you split that page withwhat is being said about autism
(02:09):
right now?
Dr Ripson, why don't we beginwith your concerns?
Let's start with kind of on theright side of the page there.
Speaker 3 (02:14):
Yeah, so a lot of the conversation now is predicated
on the fact that there's somemisinformed information in the
community, but they're alsoreally well-publicized
misinformation.
Information in the community,but they're also really
well-publicized misinformation,especially the recent comments
regarding individuals withautism who will never hold a job
, who will never pay taxes, whowill never write a poem, for
(02:39):
example.
Probably 40% of the adultindividuals in my practice
actually have jobs and they getpaid for those jobs.
So that's a major concern isthat this is misinformation
that's being pushed out into thecommunity, and the problem with
that is that it clouds thewhole conversation because there
are many individuals withautism who will not hold a job
and they will not pay taxes.
It doesn't mean they're notimportant people and it means we
(03:01):
really need to help step up theservices for them.
Speaker 1 (03:04):
Well, and we've had people on this very podcast,
many who have jobs and arepaying their taxes and again
fulfilling that list that youjust mentioned Absolutely.
What other concerns do you have?
Speaker 3 (03:17):
So in the state of Ohio recently it's been.
Cannabis has become legal forrecreational use and there's
been marketing pushes into thelegislature to say that
individuals with autism shoulduse cannabis as a treatment for
autism and behaviors.
The research really suggeststhat individuals with autism
(03:45):
have a a 10 percent higher riskof psychosis compared to the
general population, but we'repretty sure it's not actually a
treatment for behaviors that isappropriate.
Speaker 1 (03:57):
Dr Lindgren, let's begin on the right side of your
page.
What are your concerns rightnow?
Speaker 2 (04:02):
So a couple of points I'd like to make just to start
out.
When I talk about autism, I douse autistic individuals and
people with autisminterchangeably to represent the
broad scope of people'spersonal preferences, and that
actually kind of gets to myright side of the page concern,
which is the conversation hasbeen very reductionistic and
(04:27):
reduced to very broad brushstatements as opposed to the
fine level of detail that'sneeded On the other side of the
page, pros column.
We need a conversation aroundautism.
The challenge is we need a morerefined strategic conversation
that includes all voices andincludes the full spectrum of
(04:50):
individuals with autism andincludes the full spectrum of
needs that our country hasaround the autistic individuals.
So the challenge I have withthe government's statements,
much like Dr Ripson's, are thebroad brush statements that lean
towards misinformation and thatare tilting potentially the
(05:14):
strategy of our country goingforward.
Speaker 1 (05:17):
Okay, what positives right now Dr Ripson are there,
with there being so muchdiscussion around autism right
now.
Speaker 3 (05:23):
So in 2022, our federal government funded nine
centers of excellence for autismand the awards were a total of
$100 million, and these arevaried topics, from the use of
health services andsubpopulations of people with
autism, which is reallyimportant aging and autism
(05:43):
understanding, the interplay ofgenetics and environmental
effects for individuals withautism and their health outcomes
.
These nine total centers comefrom a really deep understanding
of the complexity of studyingautism and I think it's
wonderful and this is afive-year study.
2022 is when it started, soprobably 2027 is when we'll get
(06:06):
some information from this.
But I also think Dr Lindgren isalso at a Center for Excellence
for Autism with regard tobehaviors.
Is that correct?
Speaker 2 (06:16):
Yeah, that's correct.
Speaker 3 (06:17):
Yeah.
So I think that the positivesare that people are really doing
great work and that great worksimply needs to be funded and
publicized more.
Speaker 1 (06:26):
With your opening remarks, you both are getting to
really the next thing I wantedto bring up, and that is
myth-busting.
So, dr Langren, what are somecommon myths out there about
autism in general?
And then can we also go intovaccines and autism too?
Speaker 2 (06:43):
Yes, and actually that was going to be my number
one myth.
The number one myth out thereis that vaccines somehow are
related to causing autism, whichhas been completely, completely
debunked and is not true andreally is a public health risk.
Because if parents areconcerned about administering
vaccines to their children,we're opening up our country to
(07:04):
a whole nother potential wave ofproblems around contagious
illnesses and preventableillnesses.
So that's the number one mytharound that.
The second myth around autism,which I'm afraid has gained
steam because of these comments,is that autistic individuals,
seeing an autistic individual,they're all the same.
(07:26):
They all have the same deficits, they all have the same
strengths, they all have thesame presentation, which we know
is not true.
There is just like there's noend to the variety of people
that you meet.
There's no end to the varietyof individuals with autism and
they all have a differentprofile of strengths and
(07:46):
weaknesses.
And the reason that is reallyimportant to me is that when I
heard those comments being made,my concern was for the new
parent who might be having theirchild diagnosed with autism for
the first time and assumingthat what the secretary said is
the future, is the truth of thefuture for their child and
(08:08):
really what we know is thatevery single journey, every
single trajectory is differentand it's really important for us
as a country to understand thatand embrace that as we develop
our strategy around autismservices.
Speaker 3 (08:22):
Yeah, and I'm going to just move back into the
autism and vaccines and be alittle more specific about that,
because it's something that hasreally persisted in spite of
evidence against it.
So in 1998, lancet, which is amedical journal, published a
study that said that individualswho had the MMR the measles,
mumps, rubella vaccine developedautism at higher rates.
(08:44):
When you dig into that study,there were actually only 12
individuals in this study.
Three of them never had autismto begin with, five of them
developed autism before they gotthe vaccine and the others
there was no relationship.
That was such a fraudulentstudy that both of the
individuals who did the studylost their medical license in
(09:07):
Great Britain.
But the myth still persists,even though there have been over
2 million children studied inreally high quality research
studies.
That demonstrates that there isno association whatsoever.
And it's important thatsometimes people hear well,
there's no association becauseyou haven't found it, but in
reality there never was anassociation and that it actually
(09:29):
has been debunked.
But it still unfortunatelypersists and we kind of can see
that in our environment now withthe reduction in vaccines that
parents are giving theirchildren.
Speaker 1 (09:39):
I'm curious to both of you are you hearing more from
people, whether it's parents orjust it could be a neighbor
across the street from you whoknows what you do, who knows
your respective expertise?
Are you hearing more and morepeople saying something like
well, hey, what's all this talkabout vaccines and autism?
Are you finding that you'rehaving to answer that question
more and more these days?
Speaker 3 (10:01):
Not necessarily more and more, but because my
practice has a lot ofindividuals with autism, I do
run into parents who have notvaccinated their children
because of that link and theymade that decision.
Maybe their child now is 20years old, but they made the
decision when he or she was achild.
So, yeah, we definitely seethat still.
Speaker 2 (10:18):
The only thing I might add is that Bancroft
serves individuals withsignificant autism, who have
what some people call profoundautism.
It's an autism for individualswho require 24-hour support, who
have significant behavioral andcognitive needs.
But we also serve people whoare medically complex and we
(10:39):
have a small population ofchildren here whose parents
might not be able to get themvaccinated and they're more at
risk because of the reduction invaccination kind of across the
country.
So we do see here some issueswith parents being reluctant to
vaccinate their already autisticchildren because of concerns of
(11:03):
exacerbation and that's mildlyproblematic.
But for us it's not really ahuge deal because we serve
people who already have adiagnosis.
Speaker 1 (11:12):
Let me back up just a little bit in time.
I want to go back to April,when this latest report from the
CDC, the Centers for DiseaseControl, came out.
There was also a pressconference that day where quote
environmental factors werediscussed as contributors.
And then that prompted DrJoshua Anbar, who helped with
the report, also teaches atArizona State University, to say
(11:34):
this quote autism's not aninfectious disease.
There aren't preventativemeasures we can take.
End quote.
Can you both share what theresearch says about DNA and
environmental factors related toautism?
Speaker 3 (11:50):
Let's take an example of someone with Down syndrome,
for example.
That's a very clear geneticmutation of chromosome number 21
.
So when someone has Downsyndrome, they always have an
anomaly of the chromosome 21.
The most relevant and currentresearch regarding autism is
(12:14):
there's probably not a mutationof the genes themselves, but
rather a phenomenon we callepigenetics, which means
something is turning on andturning off the expression of
genes, but the underlying genesthemselves stay the same
expression of genes, but theunderlying genes themselves stay
the same.
And that's still.
We see that interplay in a lotof chronic medical conditions a
little less understood than we'dlike it to be, but there's a
lot of research into that.
Speaker 1 (12:35):
Well, as we said, we welcome these discussions, but
it's also imperative to thiswhole discussion to discuss
language, and, dr Langer, youtalked a little bit about
interchangeable language andterms and things like that.
Let's dive into that a littlebit more.
We're always getting newlisteners to our episodes, so
why don't we tick through someguidelines, some terms and just
(12:57):
overall knowledge that all of usneed to know or maybe need to
brush up on when it comes tolanguage around autism?
Speaker 2 (13:04):
Sure, and I'd like to start off by saying that there
is really a lot of talk aroundautism in our country today, for
really good reason.
So the autistic community hasbeen historically excluded from
the research that involves them,from the research that involves
(13:28):
them, and autism in the pasthas really been pathologized
only and has not takenstrength-based approach.
For those reasons, there aresegments of the autistic
community that, very rightfully,have become very vocal around
the way we talk about autism,the way autism is researched,
the way we've discussed it.
At the same time, there's agrowing community of parents
(13:50):
mostly, who are raising childrenwith significant, significant
impairments, children whorequire 24-hour care because of
the significance of theirmedical, their behavioral needs
or their cognitive needs.
Bancroft serves a large numberof these children and these
(14:10):
adults.
These are individuals whoreally require an adult to be
with them 24-7 for their safety,their activities of daily
living.
So we have really two verydifferent pockets of voices that
are making their statements andtrying to have their voice
heard and understood in thecountry.
(14:31):
So, for those reasons, when wetalk about autism, we're not
talking about one particulartype of person or one particular
pathway or one individual.
We're talking about the entirespectrum of needs.
So for those reasons there arepeople who prefer individuals
with autism as language.
Autistic individuals mightprefer autistic individual an
(14:56):
identity-first language thatsort of captures the pride that
might go along with beingneurodiverse for an individual.
So even within the confines ofautism within our country, these
very different voices aretrying to influence the
conversation, and for goodreason.
(15:17):
They're both represent groupsthat have not really gotten a
lot of attention and have kindof been ignored in the
population.
So one thing I want to mentionabout profound autism.
Profound autism is this termwhich for some individuals is
controversial, but it reallyrefers to individuals who have
significant cognitive needs andintellectual disability coupled
(15:38):
with significant symptoms ofautism, and they require 24-hour
support.
And one of the interestingthings about profound autism in
our country is that whileindividuals with profound autism
account for more than 30% ofautistic individuals, less than
6% of the research has focusedon the needs of this group, and
(16:02):
this group, from our country'sperspective, requires the most
services.
So they're one of the mostcostly groups.
They're individuals who requirea full array of behavioral
services, medical services,support services.
So we've really not, as acountry, done a good job
investigating the needs of thispopulation and what we can be
(16:24):
doing to make the life courseoutcomes for these individuals
and for their families better,because their families are
inherently included in thisdiscussion as well.
Speaker 3 (16:35):
One thing that's not always known about autism is
that it can or does not coexistwith intellectual disability,
and intellectual disability ison a spectrum as well.
So very much what Dr Lingernwas saying.
Intellectual disability isanywhere from mild to moderate
to severe to profound Autism.
Can individuals with autismsome do not have intellectual
(16:56):
disability, but many do atvarious levels.
And then the third component isthe language level.
So we think about autism interms of autism, and then
intellectual disability and thenlanguage disorder, and we look
at the interplay of all of thoseand, as Dr Lindgren is saying,
definitely individuals who haveprofound intellectual disability
(17:16):
oftentimes then will haveprofound autism, what we call
profound autism, and theyabsolutely require services that
right now they're not getting.
Speaker 1 (17:25):
Let me ask another, what I'll call another baseline
question, and for that I want tocome back to that CDC report,
because I pulled out some datafrom that report and one number
particularly got my attentionand it's this one Autism rates
among children have increasednearly five-fold since the year
2000.
(17:46):
Can both of you help usunderstand where we are with
this current data?
Speaker 3 (17:50):
I think there's some disagreement regarding it, right
, like there is, and I think theother thing I want to say about
research and autism or anycommitted group of people
looking at any medical or healthcondition there's going to be
disagreement, and it's okay.
The less we disagree, the morewe're probably not probing the
depths, right.
But in this situation, I'm notsure that there is truly an
(18:13):
increase.
I'm certainly true there'slikely an increase in incidence
of autism, but so much of it isimproved screening and I know
that there's individuals whothink that that is not an
explanation for it, but it isabsolutely an explanation.
I just don't know if it's theentire explanation for that
Interesting.
Speaker 2 (18:32):
I really think that's a really good point.
Dr Ripson, I would 100% agreeimproved screening.
And as the diagnostic criteriafor autism has changed over the
years, it has encompassed abroader range of individuals and
more neurodiverse.
People who might have beenmasking their autism symptoms
(18:53):
for many years are no longerdoing that.
But I really liked what DrRipson said around the
conversation and disagreement.
The most important thing wecould be doing is continuing to
have healthy debate around this,because it's that healthy
debate that's going to lead usto some real answers as to what
that mean, those numbers mean.
(19:13):
In the meantime, I can't helpbut say the challenge for us as
a country is to try and figureout how do we maximize the life
course outcomes for the autisticpopulation in our country today
.
So we have a lot of differentthings we need to do as a
country understand why the ratesare increasing, really dig into
(19:39):
the science behind that andreally dig into the science
around.
What are the best treatments,what are the best services, what
are the best supports we can begiving folks so that they have
a really healthy outcome andthey can be one of those people
who have jobs and families andall of those things.
Speaker 1 (19:52):
Let me pick up on Dr Ripson, what you mentioned about
increased screenings, because,at least from what I've read the
homework that I try to docoming into each and every
episode autism prevalence thereare myriad factors here.
We've got increased screenings,increased awareness, greater
access to services, the broaderdefinitions of the disorder.
(20:14):
Can we talk about those as well?
Speaker 3 (20:16):
Some are well understood, which is the
increase in screening and thenalso the increase in ability to
diagnose.
So, for example, an individualcame to Ohio recently from
another state and that stateactually said you really
couldn't get a diagnosis ofautism until you're age six,
which is pretty outdated, right,but I've been in medicine for
(20:36):
25 years and we used to say nowthis has been a long time, but
we used to say you don't eventhink about diagnosing until
someone is around four to sixyears old.
Now we know we begin diagnosisat begin screenings at 15 to 18
months makes a big, bigdifference in the population.
And then, because of, as DrLindgren said, increased
awareness of autism, individualson both ends of the spectrum
(20:58):
are going to be betteridentified with increased
awareness.
So, individuals with very mildautism and we see girls and
young women diagnosed at a lowerrate than boys and young men,
sometimes because they present alittle bit differently.
But now, with increasedawareness, there's more
identification of adolescentgirls who had not previously
been diagnosed.
Then you look at the other endof the spectrum, individuals
(21:21):
with profound autism andprofound intellectual disability
.
It can be very hard to teaseout whether or not an individual
with profound intellectualdisability, has autism or not.
But with increased awarenesssome of that's being done and
there's some excellentpsychologists who really can
tease out that difference.
And then that makes adifference in how an individual
(21:43):
is cared for.
Speaker 2 (21:44):
I 100% agree with what Dr Ripson said and as she
was talking I was thinking youknow, of course it's the
diagnostic challenge, butthere's a lot of other
psychiatric issues that canpresent as autism, attention
deficit disorder, anxiety.
All of these things influence,and you influence, whether or
not a person might be diagnosedwith autism and you really need
(22:06):
a good diagnostician when youhave people with complex
presentations.
And I think as our countrybecomes better, as practitioners
become better at teasing thosethings out, we do see an
increase in the rates ofdiagnosis, for good reason,
because people are able tofigure those things out.
Speaker 1 (22:23):
Let's talk about healthcare and health services
now, dr Lindgren, what are thechallenges in providing care for
autistic individuals?
Speaker 2 (22:32):
So the challenge is that the healthcare system has
really not been created or isnot set up for success for an
autistic individual.
There are multiple barriersaround accessing healthcare.
I think even about myself andthe challenges I have in
accessing healthcare and gettinggood care.
I need to be able to scheduleappointments.
(22:54):
I need to often be able to usemy own portal to get into those
appointments.
I need to be able to succinctlyconvey to the doctor what my
concerns are.
I need to be able to understandinstructions.
I need to be able to have anexamination.
I need to be able to wait oftenfor physicians and then I need
(23:14):
to be able to carry throughthose instructions.
So at every step of the way,there are really skills that you
need to have access to the besthealthcare.
For autistic individuals,particularly the autistic
individuals, bankrupt serviceand I just want to be clear
about that there's a widevariety, so this is not true for
all autistic individuals, butfor the folks we serve who have
(23:35):
really significant needs,there's a barrier every step of
the way.
They may not be able to waitfor a doctor, the waiting room
might be sensorily overwhelmingfor them, they may not be able
to communicate and they may beafraid when the doctor comes in
and not know what to expect andreact behaviorally to the
(23:57):
examination.
You often have a caretaker withthem who's trying to manage the
behavior at the same time thatthey're listening to the doctor,
so there's a lot of barriers inaccessing it, and so setting up
healthcare systems andhealthcare clinics and
healthcare clinics and workingwith healthcare systems
partnering with them Bancroftcertainly does that to make the
(24:20):
system as welcoming and as highquality as we can really can
make a significant difference inthe lives of individuals.
Speaker 3 (24:31):
I believe that most individuals in general can be
served by a primary care force.
But Dr Linger makes a reallygood point is that some
individuals and that's sort ofthe genesis of boundless health
right is to address some ofthose things up front, making
sure that wait times are limited, making sure that we really are
meeting people where they're at, as they begin and continue
(24:53):
through their care.
It's really, really important.
But the other piece too is thatvery often with chronic
conditions, as doctors we focuson the chronic condition more
than we focus on preventive care.
So, for example, the rates ofcolon cancer screening should be
just as high with individualswith autism as they are in the
general population.
(25:14):
There's no reason not to dothat, but they're much lower.
And part of it is, I think,that there's a concern with
caregivers and such that say, Idon't want to put my individual
through this problem of gettingcolon cancer screened, having a
colonoscopy, for example.
But what we try to educateabout is but would you rather
have them have to address coloncancer, right?
(25:34):
So we try to educate the bestwe can and be flexible with the
way we do things.
Speaker 1 (25:40):
And to pick up on what Dr Lindgren said, into how
it's practiced for both of youappointments are longer, right
for a person who comes in.
I also think about anothercouple of episodes we've done on
the dental practice.
Here A dental appointment forsomeone with autism can look
drastically different thosedifferences that need to be
(26:01):
there understand theirenvironment, and so the office
visit can be a really scaryenvironment.
Speaker 3 (26:15):
So we talk a little bit to the parents before the
visit, but then we're alsoextremely flexible during the
visit.
So, for example, afour-year-old might come in
crying just I don't know thisenvironment, I don't understand
the environment, and then wewill never do anything invasive.
We don't have to take the bloodpressure of a four or
six-year-old.
We can, but we don't have to.
So we build on what the childis most comfortable with, and
(26:38):
oftentimes it's just you know,would you like to get up on this
scale?
Oh, no, okay, we'll go into theroom.
Would you like this room?
We oftentimes will identify aroom for an individual so that
they're coming back to the sameroom.
And then in my practice I seechildren.
It seems counterintuitive, butI actually see them more often
as opposed to less often,because they become more
experienced with the environmentand they're more comfortable.
(26:58):
So then when they do need someinvasive procedures, vaccines or
have to have their ear lookedat, they're more comfortable
with the environment.
So yeah, we really try to meetevery individual in terms of
where they're at.
Speaker 1 (27:10):
And we sweat the details, even down to paint
colors.
Absolutely yeah, that clinicalwhite.
I think that people associatewith a doctor's office or a
hospital room versus coming intoa room that may have a light
green or light blue color.
Speaker 3 (27:24):
It makes a difference .
It really does.
Those are really neutral colorsand they don't push someone's
perceptions one way or the othercolors.
And they don't push someone'sperceptions one way or the other
Because, as we know, withautism, individuals have altered
sensory perceptions oftentimes.
Sometimes they're great, othertimes more limited, but
oftentimes they're experiencingthings that we oftentimes don't.
They'll see things differently.
So it's not to say individualswith autism don't like bright
(27:47):
colors, don't like loud noise ormusic, but we provide a
completely neutral environmentso that our palate does not have
to be their palate.
Everything is neutral so theycan experience it in the purest
form.
Speaker 1 (28:02):
Let me bump up a little bit in age in this
respect, because we've alsotalked about on our podcast
series here what's called theservices cliff, and that is for
young people, especially oncethey maybe hit high teens or
early 20s boy, the services canreally drop off.
So what does health andwellness look like for aging
autistic individuals?
Speaker 2 (28:23):
So I just really love this conversation and I just
love listening to you, dr Robson, everything that you're saying.
You're singing my songs.
You know health and wellness isa lifelong journey, right when
none of us say, oh, I'm going towait till I'm this age and then
I'm going to start a health andwellness program.
We think about health andwellness and we integrate it
into our lives throughout.
(28:43):
There are also a lot ofchallenges around health and
wellness for autisticindividuals Food availability of
varieties of foods and beingable to have sensory experiences
with those foods.
We know that autistic kidsmight have more restricted
eating interests because of foodtextures or food tastes.
(29:04):
So being able to be exposed to awide variety of foods, being
able to be exposed andparticipate in healthy
activities, being able to beexposed and participate in
healthy activities and as peopleage, those problems are
compounded.
So individuals who don't haveroutines around exercise or
around activity have trouble asthey age continuing those.
(29:27):
And we know what promoteshealthy aging.
We know it's activity, healthyfood, social connection,
cognitive stimulation.
Those are the things that weall need to age in a healthy way
, and we really haven't figuredout yet what those look like for
autistic individuals, but weknow that people should have
access to good variety of diets.
They should have access to verynaturalistic opportunities to
(29:52):
exercise and they should haveaccess to social events, things
that the community encourages,that embraces them, and that's
you know.
We don't think of medicalappointments, by the way, as
social activities, but for a lotof autistic individuals that
may be a main point ofconnection.
So having a consistent providerwho knows them well is also
(30:15):
really has other benefits aswell.
Besides just the comfort levelof being able to get the exams
done and all those things, ithas a lot of social benefits for
the person as well.
Often, with all of the problemsthat people with that families
are trying to support with theirkids with autism, that the
health and wellness aspect justgoes by the wayside.
(30:35):
Families are just drained andthey don't have energy to attend
to that.
So we kind of as a community,have a responsibility to help
them figure out.
What should that look like?
How can they walk down thispath?
What are easy ways for them topromote in health and wellbeing?
Speaker 1 (30:50):
Dr Ripson, what do we need to be thinking about in
terms of the aging autisticcommunity?
Speaker 3 (30:55):
A number of things, but I want to talk a little bit
about what Dr Lindgren saidabout social awareness and being
social.
As we know, a couple years agoit came out that loneliness is a
huge issue with everybody rightin the United States and I see
especially in teenage girls whogo from high school where
(31:15):
there's kind of an automaticsocial setting, even if they may
not feel very social, if theyhave autism, but it's automatic
and then they leave high schooland they don't have an automatic
place to develop otherrelationships and it can be very
, very.
It can be very challenging whenthere's nothing out there to
help and our speech and languagepathologists specifically use
social skills in that populationand if an individual doesn't
(31:39):
have access to something likethat, which is a lot of what Dr
Lindgren is really talking about, is that the access.
We have many individuals whocan help, but when you don't
have access to those services itcan be very difficult.
But we do use those actively inthe population that feels like
they've lost their social circleand they don't know how to
regain something that helps withthem, because that's a really
huge part of their life if theycannot make deep connections
(32:02):
early on as we start to wrap upour conversation.
Speaker 1 (32:05):
This is flying by, by the way.
This is just a fantasticconversation.
Let's kind of bookend it andcome back to the role of
government here.
We started talking about healthand human services at the
federal level, but I've got tobelieve that the more all
governments know at the federal,state and local levels, the
better off we'll be in creatingmore education, more advocacy
(32:27):
and more impact.
So to both of you, how cangovernment holistically better
support the autistic community?
Speaker 2 (32:36):
There is a lot of very, very smart people and a
lot of really good researchthat's being done as we speak,
and supporting those individualsand continuing their paths is
really critical.
The folks who are in thiscommunity and who've been doing
this work for long periods oftime have gotten us pretty far
(32:57):
and I don't want to see majorchanges in how we shift or fund
autistic research.
So a couple of things I wouldrecommend, I think, staying the
course with many of the goodresearchers who are doing what
they're doing, adding some focuson the needs of the most
(33:17):
significantly impactedindividuals so that they're more
represented in research, thatautistic individuals have a
voice in that research, eitherfor themselves or, if they're
not able to have a voice, fortheir family, to have a voice so
that they're able to helpdirect and shape the needs of
(33:41):
that community going forward.
Speaker 3 (34:03):
Much like Dr Ripson started out.
The discussion here is verywelcome.
We just want to make sure thatit's not monopolized.
Continue the funding we haveand perhaps increase it a little
more in what we would calltranslational research, which
would mean taking the researchwe know kind of what we know and
moving it into how do weactually care for people?
The base research, the basicscientist research, is really
(34:23):
important, but translationalright now is where people are
really.
Families are really falling bythe wayside.
Speaker 1 (34:28):
Well, and let's be honest too, sometimes our
conversations here are heavy,but oftentimes that makes them
all the more important, and Iwould put this conversation in
that category as well, for sure.
So let's wrap it up this way Alittle bit of a personal
question to both of you whatgives you hope, what continues
to inspire you with the workthat you do?
Speaker 3 (34:52):
Every day I meet individuals who really are
committed to caring forindividuals with autism in all
regards their families,professional staff, and then
also I see the research that'sgoing on, so I have a lot of
hope.
Speaker 2 (35:07):
You know and thinking about this podcast me and Dr
Ripson, seeing what's being donethere at Boundless, being able
to share what we're doing.
This is a true community inevery sense of the word.
Autistic individuals are a truecommunity.
They're linking with andthey're talking more to
researchers, and everybodyinvolved here is very mission
driven.
People are motivated to providethe best services, the best
(35:32):
quality of life, to incorporateall the voices, and that gives
me a lot of hope around what thefuture could look like for our
country for autistic individuals.
Speaker 1 (35:41):
That's a great place to end it.
Dr Langren, thanks for joiningus.
Speaker 2 (35:44):
Thank you.
Speaker 1 (35:45):
Dr Ibsen, good to see you again.
Thank you.
Yes, you too.
Thanks a lot.
Thanks to our listeners as well.
Don't forget you can be part ofepisodes to come.
You can always email us yourquestions or comments at podcast
at Iamboundlessorg.
This is Boundless Abilitiesbrought to you by Boundless Bye.
Welcome everyone to Boundless Abilities.
I'm your host, Scott Light.
So, to put it bluntly here,autism has been in the news a
lot these days.
Health and Human ServicesSecretary Robert Kennedy has
made statements both in hiscurrent role and as a private
citizen over the years aboutvaccines, about the quality of
autism, research and factorsthat have influenced the rise in
autism cases.
(00:23):
Here at Boundless, we want allforms of government and all
people to engage with us.
We welcome the added attentionand discussions from everyone
and we certainly welcomeincreased investments that
enable all of us to betterunderstand the disorder.
But it's also ourresponsibility to speak truth to
power on what we know aboutautism at this very moment and
(00:45):
to debunk myths withoutsquelching this vital discussion
.
Well, fortunately unfortunatelyfor you, our listeners I have
two experts here today to dojust that.
Dr Karen Lindgren is the chiefclinical officer at Bancroft.
She oversees healthcare andnursing services, the Applied
Behavior Analysis Center ofExcellence and quality assurance
across the organization.
(01:06):
As a licensed psychologist, shehas more than 25 years
experience in neuropsychologicalassessment and treatment of
brain injury and neurologicalimpairment.
Dr Lengren, welcome to you,thank you so much Scott Glad to
be here.
Dr Cindy Ripson is here as well.
She's been on a previouspodcast too.
She's the medical director ofBoundless Health board-certified
family physician with over 25years experience caring for
(01:30):
patients of all ages.
As our medical director, drRipson is responsible for
providing leadership anddirection on overall goals, plus
provide best-in-class healthcare to our patients.
Welcome, dr Ripson.
Speaker 3 (01:42):
Thank you, really glad to be here, scott.
Speaker 1 (01:44):
So let's start with how I began, in that autism is
really part of the publicdiscussion right now.
So let me try to paint apicture here with my first
question.
If you both had a piece ofpaper with a line down the
middle and let's say the headeron the left reads positives and
the header on the right at thetop reads your concerns, how
would you split that page withwhat is being said about autism
(02:09):
right now?
Dr Ripson, why don't we beginwith your concerns?
Let's start with kind of on theright side of the page there.
Speaker 3 (02:14):
Yeah, so a lot of the conversation now is predicated
on the fact that there's somemisinformed information in the
community, but they're alsoreally well-publicized
misinformation.
Information in the community,but they're also really
well-publicized misinformation,especially the recent comments
regarding individuals withautism who will never hold a job
, who will never pay taxes, whowill never write a poem, for
(02:39):
example.
Probably 40% of the adultindividuals in my practice
actually have jobs and they getpaid for those jobs.
So that's a major concern isthat this is misinformation
that's being pushed out into thecommunity, and the problem with
that is that it clouds thewhole conversation because there
are many individuals withautism who will not hold a job
and they will not pay taxes.
It doesn't mean they're notimportant people and it means we
(03:01):
really need to help step up theservices for them.
Speaker 1 (03:04):
Well, and we've had people on this very podcast,
many who have jobs and arepaying their taxes and again
fulfilling that list that youjust mentioned Absolutely.
What other concerns do you have?
Speaker 3 (03:17):
So in the state of Ohio recently it's been.
Cannabis has become legal forrecreational use and there's
been marketing pushes into thelegislature to say that
individuals with autism shoulduse cannabis as a treatment for
autism and behaviors.
The research really suggeststhat individuals with autism
(03:45):
have a a 10 percent higher riskof psychosis compared to the
general population, but we'repretty sure it's not actually a
treatment for behaviors that isappropriate.
Speaker 1 (03:57):
Dr Lindgren, let's begin on the right side of your
page.
What are your concerns rightnow?
Speaker 2 (04:02):
So a couple of points I'd like to make just to start
out.
When I talk about autism, I douse autistic individuals and
people with autisminterchangeably to represent the
broad scope of people'spersonal preferences, and that
actually kind of gets to myright side of the page concern,
which is the conversation hasbeen very reductionistic and
(04:27):
reduced to very broad brushstatements as opposed to the
fine level of detail that'sneeded On the other side of the
page, pros column.
We need a conversation aroundautism.
The challenge is we need a morerefined strategic conversation
that includes all voices andincludes the full spectrum of
(04:50):
individuals with autism andincludes the full spectrum of
needs that our country hasaround the autistic individuals.
So the challenge I have withthe government's statements,
much like Dr Ripson's, are thebroad brush statements that lean
towards misinformation and thatare tilting potentially the
(05:14):
strategy of our country goingforward.
Speaker 1 (05:17):
Okay, what positives right now Dr Ripson are there,
with there being so muchdiscussion around autism right
now.
Speaker 3 (05:23):
So in 2022, our federal government funded nine
centers of excellence for autismand the awards were a total of
$100 million, and these arevaried topics, from the use of
health services andsubpopulations of people with
autism, which is reallyimportant aging and autism
(05:43):
understanding, the interplay ofgenetics and environmental
effects for individuals withautism and their health outcomes
.
These nine total centers comefrom a really deep understanding
of the complexity of studyingautism and I think it's
wonderful and this is afive-year study.
2022 is when it started, soprobably 2027 is when we'll get
(06:06):
some information from this.
But I also think Dr Lindgren isalso at a Center for Excellence
for Autism with regard tobehaviors.
Is that correct?
Speaker 2 (06:16):
Yeah, that's correct.
Speaker 3 (06:17):
Yeah.
So I think that the positivesare that people are really doing
great work and that great worksimply needs to be funded and
publicized more.
Speaker 1 (06:26):
With your opening remarks, you both are getting to
really the next thing I wantedto bring up, and that is
myth-busting.
So, dr Langren, what are somecommon myths out there about
autism in general?
And then can we also go intovaccines and autism too?
Speaker 2 (06:43):
Yes, and actually that was going to be my number
one myth.
The number one myth out thereis that vaccines somehow are
related to causing autism, whichhas been completely, completely
debunked and is not true andreally is a public health risk.
Because if parents areconcerned about administering
vaccines to their children,we're opening up our country to
(07:04):
a whole nother potential wave ofproblems around contagious
illnesses and preventableillnesses.
So that's the number one mytharound that.
The second myth around autism,which I'm afraid has gained
steam because of these comments,is that autistic individuals,
seeing an autistic individual,they're all the same.
(07:26):
They all have the same deficits, they all have the same
strengths, they all have thesame presentation, which we know
is not true.
There is just like there's noend to the variety of people
that you meet.
There's no end to the varietyof individuals with autism and
they all have a differentprofile of strengths and
(07:46):
weaknesses.
And the reason that is reallyimportant to me is that when I
heard those comments being made,my concern was for the new
parent who might be having theirchild diagnosed with autism for
the first time and assumingthat what the secretary said is
the future, is the truth of thefuture for their child and
(08:08):
really what we know is thatevery single journey, every
single trajectory is differentand it's really important for us
as a country to understand thatand embrace that as we develop
our strategy around autismservices.
Speaker 3 (08:22):
Yeah, and I'm going to just move back into the
autism and vaccines and be alittle more specific about that,
because it's something that hasreally persisted in spite of
evidence against it.
So in 1998, lancet, which is amedical journal, published a
study that said that individualswho had the MMR the measles,
mumps, rubella vaccine developedautism at higher rates.
(08:44):
When you dig into that study,there were actually only 12
individuals in this study.
Three of them never had autismto begin with, five of them
developed autism before they gotthe vaccine and the others
there was no relationship.
That was such a fraudulentstudy that both of the
individuals who did the studylost their medical license in
(09:07):
Great Britain.
But the myth still persists,even though there have been over
2 million children studied inreally high quality research
studies.
That demonstrates that there isno association whatsoever.
And it's important thatsometimes people hear well,
there's no association becauseyou haven't found it, but in
reality there never was anassociation and that it actually
(09:29):
has been debunked.
But it still unfortunatelypersists and we kind of can see
that in our environment now withthe reduction in vaccines that
parents are giving theirchildren.
Speaker 1 (09:39):
I'm curious to both of you are you hearing more from
people, whether it's parents orjust it could be a neighbor
across the street from you whoknows what you do, who knows
your respective expertise?
Are you hearing more and morepeople saying something like
well, hey, what's all this talkabout vaccines and autism?
Are you finding that you'rehaving to answer that question
more and more these days?
Speaker 3 (10:01):
Not necessarily more and more, but because my
practice has a lot ofindividuals with autism, I do
run into parents who have notvaccinated their children
because of that link and theymade that decision.
Maybe their child now is 20years old, but they made the
decision when he or she was achild.
So, yeah, we definitely seethat still.
Speaker 2 (10:18):
The only thing I might add is that Bancroft
serves individuals withsignificant autism, who have
what some people call profoundautism.
It's an autism for individualswho require 24-hour support, who
have significant behavioral andcognitive needs.
But we also serve people whoare medically complex and we
(10:39):
have a small population ofchildren here whose parents
might not be able to get themvaccinated and they're more at
risk because of the reduction invaccination kind of across the
country.
So we do see here some issueswith parents being reluctant to
vaccinate their already autisticchildren because of concerns of
(11:03):
exacerbation and that's mildlyproblematic.
But for us it's not really ahuge deal because we serve
people who already have adiagnosis.
Speaker 1 (11:12):
Let me back up just a little bit in time.
I want to go back to April,when this latest report from the
CDC, the Centers for DiseaseControl, came out.
There was also a pressconference that day where quote
environmental factors werediscussed as contributors.
And then that prompted DrJoshua Anbar, who helped with
the report, also teaches atArizona State University, to say
(11:34):
this quote autism's not aninfectious disease.
There aren't preventativemeasures we can take.
End quote.
Can you both share what theresearch says about DNA and
environmental factors related toautism?
Speaker 3 (11:50):
Let's take an example of someone with Down syndrome,
for example.
That's a very clear geneticmutation of chromosome number 21
.
So when someone has Downsyndrome, they always have an
anomaly of the chromosome 21.
The most relevant and currentresearch regarding autism is
(12:14):
there's probably not a mutationof the genes themselves, but
rather a phenomenon we callepigenetics, which means
something is turning on andturning off the expression of
genes, but the underlying genesthemselves stay the same
expression of genes, but theunderlying genes themselves stay
the same.
And that's still.
We see that interplay in a lotof chronic medical conditions a
little less understood than we'dlike it to be, but there's a
lot of research into that.
Speaker 1 (12:35):
Well, as we said, we welcome these discussions, but
it's also imperative to thiswhole discussion to discuss
language, and, dr Langer, youtalked a little bit about
interchangeable language andterms and things like that.
Let's dive into that a littlebit more.
We're always getting newlisteners to our episodes, so
why don't we tick through someguidelines, some terms and just
(12:57):
overall knowledge that all of usneed to know or maybe need to
brush up on when it comes tolanguage around autism?
Speaker 2 (13:04):
Sure, and I'd like to start off by saying that there
is really a lot of talk aroundautism in our country today, for
really good reason.
So the autistic community hasbeen historically excluded from
the research that involves them,from the research that involves
(13:28):
them, and autism in the pasthas really been pathologized
only and has not takenstrength-based approach.
For those reasons, there aresegments of the autistic
community that, very rightfully,have become very vocal around
the way we talk about autism,the way autism is researched,
the way we've discussed it.
At the same time, there's agrowing community of parents
(13:50):
mostly, who are raising childrenwith significant, significant
impairments, children whorequire 24-hour care because of
the significance of theirmedical, their behavioral needs
or their cognitive needs.
Bancroft serves a large numberof these children and these
(14:10):
adults.
These are individuals whoreally require an adult to be
with them 24-7 for their safety,their activities of daily
living.
So we have really two verydifferent pockets of voices that
are making their statements andtrying to have their voice
heard and understood in thecountry.
(14:31):
So, for those reasons, when wetalk about autism, we're not
talking about one particulartype of person or one particular
pathway or one individual.
We're talking about the entirespectrum of needs.
So for those reasons there arepeople who prefer individuals
with autism as language.
Autistic individuals mightprefer autistic individual an
(14:56):
identity-first language thatsort of captures the pride that
might go along with beingneurodiverse for an individual.
So even within the confines ofautism within our country, these
very different voices aretrying to influence the
conversation, and for goodreason.
(15:17):
They're both represent groupsthat have not really gotten a
lot of attention and have kindof been ignored in the
population.
So one thing I want to mentionabout profound autism.
Profound autism is this termwhich for some individuals is
controversial, but it reallyrefers to individuals who have
significant cognitive needs andintellectual disability coupled
(15:38):
with significant symptoms ofautism, and they require 24-hour
support.
And one of the interestingthings about profound autism in
our country is that whileindividuals with profound autism
account for more than 30% ofautistic individuals, less than
6% of the research has focusedon the needs of this group, and
(16:02):
this group, from our country'sperspective, requires the most
services.
So they're one of the mostcostly groups.
They're individuals who requirea full array of behavioral
services, medical services,support services.
So we've really not, as acountry, done a good job
investigating the needs of thispopulation and what we can be
(16:24):
doing to make the life courseoutcomes for these individuals
and for their families better,because their families are
inherently included in thisdiscussion as well.
Speaker 3 (16:35):
One thing that's not always known about autism is
that it can or does not coexistwith intellectual disability,
and intellectual disability ison a spectrum as well.
So very much what Dr Lingernwas saying.
Intellectual disability isanywhere from mild to moderate
to severe to profound Autism.
Can individuals with autismsome do not have intellectual
(16:56):
disability, but many do atvarious levels.
And then the third component isthe language level.
So we think about autism interms of autism, and then
intellectual disability and thenlanguage disorder, and we look
at the interplay of all of thoseand, as Dr Lindgren is saying,
definitely individuals who haveprofound intellectual disability
(17:16):
oftentimes then will haveprofound autism, what we call
profound autism, and theyabsolutely require services that
right now they're not getting.
Speaker 1 (17:25):
Let me ask another, what I'll call another baseline
question, and for that I want tocome back to that CDC report,
because I pulled out some datafrom that report and one number
particularly got my attentionand it's this one Autism rates
among children have increasednearly five-fold since the year
2000.
(17:46):
Can both of you help usunderstand where we are with
this current data?
Speaker 3 (17:50):
I think there's some disagreement regarding it, right
, like there is, and I think theother thing I want to say about
research and autism or anycommitted group of people
looking at any medical or healthcondition there's going to be
disagreement, and it's okay.
The less we disagree, the morewe're probably not probing the
depths, right.
But in this situation, I'm notsure that there is truly an
(18:13):
increase.
I'm certainly true there'slikely an increase in incidence
of autism, but so much of it isimproved screening and I know
that there's individuals whothink that that is not an
explanation for it, but it isabsolutely an explanation.
I just don't know if it's theentire explanation for that
Interesting.
Speaker 2 (18:32):
I really think that's a really good point.
Dr Ripson, I would 100% agreeimproved screening.
And as the diagnostic criteriafor autism has changed over the
years, it has encompassed abroader range of individuals and
more neurodiverse.
People who might have beenmasking their autism symptoms
(18:53):
for many years are no longerdoing that.
But I really liked what DrRipson said around the
conversation and disagreement.
The most important thing wecould be doing is continuing to
have healthy debate around this,because it's that healthy
debate that's going to lead usto some real answers as to what
that mean, those numbers mean.
(19:13):
In the meantime, I can't helpbut say the challenge for us as
a country is to try and figureout how do we maximize the life
course outcomes for the autisticpopulation in our country today
.
So we have a lot of differentthings we need to do as a
country understand why the ratesare increasing, really dig into
(19:39):
the science behind that andreally dig into the science
around.
What are the best treatments,what are the best services, what
are the best supports we can begiving folks so that they have
a really healthy outcome andthey can be one of those people
who have jobs and families andall of those things.
Speaker 1 (19:52):
Let me pick up on Dr Ripson, what you mentioned about
increased screenings, because,at least from what I've read the
homework that I try to docoming into each and every
episode autism prevalence thereare myriad factors here.
We've got increased screenings,increased awareness, greater
access to services, the broaderdefinitions of the disorder.
(20:14):
Can we talk about those as well?
Speaker 3 (20:16):
Some are well understood, which is the
increase in screening and thenalso the increase in ability to
diagnose.
So, for example, an individualcame to Ohio recently from
another state and that stateactually said you really
couldn't get a diagnosis ofautism until you're age six,
which is pretty outdated, right,but I've been in medicine for
(20:36):
25 years and we used to say nowthis has been a long time, but
we used to say you don't eventhink about diagnosing until
someone is around four to sixyears old.
Now we know we begin diagnosisat begin screenings at 15 to 18
months makes a big, bigdifference in the population.
And then, because of, as DrLindgren said, increased
awareness of autism, individualson both ends of the spectrum
(20:58):
are going to be betteridentified with increased
awareness.
So, individuals with very mildautism and we see girls and
young women diagnosed at a lowerrate than boys and young men,
sometimes because they present alittle bit differently.
But now, with increasedawareness, there's more
identification of adolescentgirls who had not previously
been diagnosed.
Then you look at the other endof the spectrum, individuals
(21:21):
with profound autism andprofound intellectual disability
.
It can be very hard to teaseout whether or not an individual
with profound intellectualdisability, has autism or not.
But with increased awarenesssome of that's being done and
there's some excellentpsychologists who really can
tease out that difference.
And then that makes adifference in how an individual
(21:43):
is cared for.
Speaker 2 (21:44):
I 100% agree with what Dr Ripson said and as she
was talking I was thinking youknow, of course it's the
diagnostic challenge, butthere's a lot of other
psychiatric issues that canpresent as autism, attention
deficit disorder, anxiety.
All of these things influence,and you influence, whether or
not a person might be diagnosedwith autism and you really need
(22:06):
a good diagnostician when youhave people with complex
presentations.
And I think as our countrybecomes better, as practitioners
become better at teasing thosethings out, we do see an
increase in the rates ofdiagnosis, for good reason,
because people are able tofigure those things out.
Speaker 1 (22:23):
Let's talk about healthcare and health services
now, dr Lindgren, what are thechallenges in providing care for
autistic individuals?
Speaker 2 (22:32):
So the challenge is that the healthcare system has
really not been created or isnot set up for success for an
autistic individual.
There are multiple barriersaround accessing healthcare.
I think even about myself andthe challenges I have in
accessing healthcare and gettinggood care.
I need to be able to scheduleappointments.
(22:54):
I need to often be able to usemy own portal to get into those
appointments.
I need to be able to succinctlyconvey to the doctor what my
concerns are.
I need to be able to understandinstructions.
I need to be able to have anexamination.
I need to be able to wait oftenfor physicians and then I need
(23:14):
to be able to carry throughthose instructions.
So at every step of the way,there are really skills that you
need to have access to the besthealthcare.
For autistic individuals,particularly the autistic
individuals, bankrupt serviceand I just want to be clear
about that there's a widevariety, so this is not true for
all autistic individuals, butfor the folks we serve who have
(23:35):
really significant needs,there's a barrier every step of
the way.
They may not be able to waitfor a doctor, the waiting room
might be sensorily overwhelmingfor them, they may not be able
to communicate and they may beafraid when the doctor comes in
and not know what to expect andreact behaviorally to the
(23:57):
examination.
You often have a caretaker withthem who's trying to manage the
behavior at the same time thatthey're listening to the doctor,
so there's a lot of barriers inaccessing it, and so setting up
healthcare systems andhealthcare clinics and
healthcare clinics and workingwith healthcare systems
partnering with them Bancroftcertainly does that to make the
(24:20):
system as welcoming and as highquality as we can really can
make a significant difference inthe lives of individuals.
Speaker 3 (24:31):
I believe that most individuals in general can be
served by a primary care force.
But Dr Linger makes a reallygood point is that some
individuals and that's sort ofthe genesis of boundless health
right is to address some ofthose things up front, making
sure that wait times are limited, making sure that we really are
meeting people where they're at, as they begin and continue
(24:53):
through their care.
It's really, really important.
But the other piece too is thatvery often with chronic
conditions, as doctors we focuson the chronic condition more
than we focus on preventive care.
So, for example, the rates ofcolon cancer screening should be
just as high with individualswith autism as they are in the
general population.
(25:14):
There's no reason not to dothat, but they're much lower.
And part of it is, I think,that there's a concern with
caregivers and such that say, Idon't want to put my individual
through this problem of gettingcolon cancer screened, having a
colonoscopy, for example.
But what we try to educateabout is but would you rather
have them have to address coloncancer, right?
(25:34):
So we try to educate the bestwe can and be flexible with the
way we do things.
Speaker 1 (25:40):
And to pick up on what Dr Lindgren said, into how
it's practiced for both of youappointments are longer, right
for a person who comes in.
I also think about anothercouple of episodes we've done on
the dental practice.
Here A dental appointment forsomeone with autism can look
drastically different thosedifferences that need to be
(26:01):
there understand theirenvironment, and so the office
visit can be a really scaryenvironment.
Speaker 3 (26:15):
So we talk a little bit to the parents before the
visit, but then we're alsoextremely flexible during the
visit.
So, for example, afour-year-old might come in
crying just I don't know thisenvironment, I don't understand
the environment, and then wewill never do anything invasive.
We don't have to take the bloodpressure of a four or
six-year-old.
We can, but we don't have to.
So we build on what the childis most comfortable with, and
(26:38):
oftentimes it's just you know,would you like to get up on this
scale?
Oh, no, okay, we'll go into theroom.
Would you like this room?
We oftentimes will identify aroom for an individual so that
they're coming back to the sameroom.
And then in my practice I seechildren.
It seems counterintuitive, butI actually see them more often
as opposed to less often,because they become more
experienced with the environmentand they're more comfortable.
(26:58):
So then when they do need someinvasive procedures, vaccines or
have to have their ear lookedat, they're more comfortable
with the environment.
So yeah, we really try to meetevery individual in terms of
where they're at.
Speaker 1 (27:10):
And we sweat the details, even down to paint
colors.
Absolutely yeah, that clinicalwhite.
I think that people associatewith a doctor's office or a
hospital room versus coming intoa room that may have a light
green or light blue color.
Speaker 3 (27:24):
It makes a difference .
It really does.
Those are really neutral colorsand they don't push someone's
perceptions one way or the othercolors.
And they don't push someone'sperceptions one way or the other
Because, as we know, withautism, individuals have altered
sensory perceptions oftentimes.
Sometimes they're great, othertimes more limited, but
oftentimes they're experiencingthings that we oftentimes don't.
They'll see things differently.
So it's not to say individualswith autism don't like bright
(27:47):
colors, don't like loud noise ormusic, but we provide a
completely neutral environmentso that our palate does not have
to be their palate.
Everything is neutral so theycan experience it in the purest
form.
Speaker 1 (28:02):
Let me bump up a little bit in age in this
respect, because we've alsotalked about on our podcast
series here what's called theservices cliff, and that is for
young people, especially oncethey maybe hit high teens or
early 20s boy, the services canreally drop off.
So what does health andwellness look like for aging
autistic individuals?
Speaker 2 (28:23):
So I just really love this conversation and I just
love listening to you, dr Robson, everything that you're saying.
You're singing my songs.
You know health and wellness isa lifelong journey, right when
none of us say, oh, I'm going towait till I'm this age and then
I'm going to start a health andwellness program.
We think about health andwellness and we integrate it
into our lives throughout.
(28:43):
There are also a lot ofchallenges around health and
wellness for autisticindividuals Food availability of
varieties of foods and beingable to have sensory experiences
with those foods.
We know that autistic kidsmight have more restricted
eating interests because of foodtextures or food tastes.
(29:04):
So being able to be exposed to awide variety of foods, being
able to be exposed andparticipate in healthy
activities, being able to beexposed and participate in
healthy activities and as peopleage, those problems are
compounded.
So individuals who don't haveroutines around exercise or
around activity have trouble asthey age continuing those.
(29:27):
And we know what promoteshealthy aging.
We know it's activity, healthyfood, social connection,
cognitive stimulation.
Those are the things that weall need to age in a healthy way
, and we really haven't figuredout yet what those look like for
autistic individuals, but weknow that people should have
access to good variety of diets.
They should have access to verynaturalistic opportunities to
(29:52):
exercise and they should haveaccess to social events, things
that the community encourages,that embraces them, and that's
you know.
We don't think of medicalappointments, by the way, as
social activities, but for a lotof autistic individuals that
may be a main point ofconnection.
So having a consistent providerwho knows them well is also
(30:15):
really has other benefits aswell.
Besides just the comfort levelof being able to get the exams
done and all those things, ithas a lot of social benefits for
the person as well.
Often, with all of the problemsthat people with that families
are trying to support with theirkids with autism, that the
health and wellness aspect justgoes by the wayside.
(30:35):
Families are just drained andthey don't have energy to attend
to that.
So we kind of as a community,have a responsibility to help
them figure out.
What should that look like?
How can they walk down thispath?
What are easy ways for them topromote in health and wellbeing?
Speaker 1 (30:50):
Dr Ripson, what do we need to be thinking about in
terms of the aging autisticcommunity?
Speaker 3 (30:55):
A number of things, but I want to talk a little bit
about what Dr Lindgren saidabout social awareness and being
social.
As we know, a couple years agoit came out that loneliness is a
huge issue with everybody rightin the United States and I see
especially in teenage girls whogo from high school where
(31:15):
there's kind of an automaticsocial setting, even if they may
not feel very social, if theyhave autism, but it's automatic
and then they leave high schooland they don't have an automatic
place to develop otherrelationships and it can be very
, very.
It can be very challenging whenthere's nothing out there to
help and our speech and languagepathologists specifically use
social skills in that populationand if an individual doesn't
(31:39):
have access to something likethat, which is a lot of what Dr
Lindgren is really talking about, is that the access.
We have many individuals whocan help, but when you don't
have access to those services itcan be very difficult.
But we do use those actively inthe population that feels like
they've lost their social circleand they don't know how to
regain something that helps withthem, because that's a really
huge part of their life if theycannot make deep connections
(32:02):
early on as we start to wrap upour conversation.
Speaker 1 (32:05):
This is flying by, by the way.
This is just a fantasticconversation.
Let's kind of bookend it andcome back to the role of
government here.
We started talking about healthand human services at the
federal level, but I've got tobelieve that the more all
governments know at the federal,state and local levels, the
better off we'll be in creatingmore education, more advocacy
(32:27):
and more impact.
So to both of you, how cangovernment holistically better
support the autistic community?
Speaker 2 (32:36):
There is a lot of very, very smart people and a
lot of really good researchthat's being done as we speak,
and supporting those individualsand continuing their paths is
really critical.
The folks who are in thiscommunity and who've been doing
this work for long periods oftime have gotten us pretty far
(32:57):
and I don't want to see majorchanges in how we shift or fund
autistic research.
So a couple of things I wouldrecommend, I think, staying the
course with many of the goodresearchers who are doing what
they're doing, adding some focuson the needs of the most
(33:17):
significantly impactedindividuals so that they're more
represented in research, thatautistic individuals have a
voice in that research, eitherfor themselves or, if they're
not able to have a voice, fortheir family, to have a voice so
that they're able to helpdirect and shape the needs of
(33:41):
that community going forward.
Speaker 3 (34:03):
Much like Dr Ripson started out.
The discussion here is verywelcome.
We just want to make sure thatit's not monopolized.
Continue the funding we haveand perhaps increase it a little
more in what we would calltranslational research, which
would mean taking the researchwe know kind of what we know and
moving it into how do weactually care for people?
The base research, the basicscientist research, is really
(34:23):
important, but translationalright now is where people are
really.
Families are really falling bythe wayside.
Speaker 1 (34:28):
Well, and let's be honest too, sometimes our
conversations here are heavy,but oftentimes that makes them
all the more important, and Iwould put this conversation in
that category as well, for sure.
So let's wrap it up this way Alittle bit of a personal
question to both of you whatgives you hope, what continues
to inspire you with the workthat you do?
Speaker 3 (34:52):
Every day I meet individuals who really are
committed to caring forindividuals with autism in all
regards their families,professional staff, and then
also I see the research that'sgoing on, so I have a lot of
hope.
Speaker 2 (35:07):
You know and thinking about this podcast me and Dr
Ripson, seeing what's being donethere at Boundless, being able
to share what we're doing.
This is a true community inevery sense of the word.
Autistic individuals are a truecommunity.
They're linking with andthey're talking more to
researchers, and everybodyinvolved here is very mission
driven.
People are motivated to providethe best services, the best
(35:32):
quality of life, to incorporateall the voices, and that gives
me a lot of hope around what thefuture could look like for our
country for autistic individuals.
Speaker 1 (35:41):
That's a great place to end it.
Dr Langren, thanks for joiningus.
Speaker 2 (35:44):
Thank you.
Speaker 1 (35:45):
Dr Ibsen, good to see you again.
Thank you.
Yes, you too.
Thanks a lot.
Thanks to our listeners as well.
Don't forget you can be part ofepisodes to come.
You can always email us yourquestions or comments at podcast
at Iamboundlessorg.
This is Boundless Abilitiesbrought to you by Boundless Bye.
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