October 29, 2025 • 23 mins
Recent headlines suggested a link between acetaminophen during pregnancy and autism or ADHD, sparking fear and second-guessing. We dig into what the studies actually say, why association is not causation, and how large sibling-based analyses change the picture.
Boundless Medical Director Dr. Cynthia Ripsin and State Director of Behavioral Health and Education Services Kendra Hill join host, Scott Light, to talk plainly about fever risk in pregnancy, the role of safe treatment, and how sensational messaging and media coverage can backfire when it pushes parents away from evidence-based care.
Our conversation walks through how we answer one of if not the hardest question we hear as of late: Did Tylenol cause my child’s autism? The short answer is no. The fuller answer starts with listening. We trace how people heard the news, clarify the language used in studies, and rebuild trust by explaining methods and what robust population data can and cannot prove. Along the way, we confront confirmation bias, the pull of social media, and the lasting shadow of long debunked vaccine-autism claim.
This episode also explores identity and support: why some people embrace difference over disability, why others face real disability from co-occurring intellectual or language challenges. Plus, how to respect both realities. Then we examine new treatment chatter around folinic acid, separating legitimate uses from overhyped generalizations. Our goal is practical and compassionate: help families make safer choices, understand study quality, and navigate care without shame or blame.
If clear, steady guidance is what you need amid the noise, you’re in the right place with Boundless. Subscribe, share this with someone who’s worried, and leave a review to help more families find credible, compassionate advice grounded in evidence.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
SPEAKER_00 (00:03):
Welcome everyone to the Nonprofit Leader's Guide
Podcast brought to you byBoundless, where we explore the
intersection of policy,practice, and people's lived
experiences.
I'm your host, Scott Light.
So today we're actually bringingyou a special episode that
delves into one of the mosttalked-about and perhaps
misunderstood public healthannouncements of the year.
(00:24):
In September, the federalgovernment suggested there may
be a link betweenacetaminophane, commonly known
as Tylenol, taken duringpregnancy and then later
diagnoses of autism or ADHD inchildren.
Here at Boundless, our clinicalleaders take their role of
bringing accurate and supportiveadvice to Boundless families and
(00:44):
the community very, veryseriously.
The headlines have beenexplosive.
The science, yes, it'scomplicated.
And for families, well,sometimes they're left
wondering, what does this allmean for me or my loved one?
Should I be worried?
Should I be doing somethingdifferently?
So that's where our clinicalleadership comes in.
So we're going to try to unpacka lot here with Dr.
(01:06):
Cynthia Ripson, medicaldirector, who has a focus in
care for people with autism andneurodevelopmental differences.
Also, Kendra Hill is here, StateDirector of Behavioral Health
and Residential Treatment hereat Boundless.
Welcome to you both.
unknown (01:22):
Thank you.
SPEAKER_02 (01:22):
Good to be here.
SPEAKER_00 (01:23):
Dr.
Ripson, why don't we begin withyou?
That government announcement,they use the word association
rather than causation.
SPEAKER_02 (01:32):
The announcement suggested that people who take a
acetaminophen during a pregnancywill have an increased risk of
having their offspring haveautism.
There's been a number of studiesthat have looked at that, and
none of them have conclusivelydetermined that.
And a very large study comingout of Sweden of about two and a
half million children and theirand and the pregnancy related to
(01:56):
their birth has determined thatthat's not an actual cause.
It may be an association, butit's not a cause.
And it's important to know thatthere's a difference between an
association and a cause.
Things can be associated, butnot necessarily one causing
another.
And in this case, there is anassociation when you simply look
(02:17):
at the raw data.
But when you look deeper and yousee could there be something
else causing individuals withautism and having STM and fin as
well, and the cause that theyidentified that they believe
identified is that when you lookat the siblings of people in the
stud the original study, thathelps explain the difference.
(02:40):
Okay.
And that's a little bit trickyto understand, but the
difference is that we know thatthere is likely some, there is
definitely some geneticinfluence in autism.
And there are also probably someunderlying environmental
influences as well.
So when you take the sibling ofsomeone that has autism in this
study and you compare it and yousay, okay, acetaminefin falls
(03:05):
off the table, and there and sowe know that the problem's not
the acetaminophin.
There potentially are otherenvironmental factors that could
be complicating a pregnancy thatcould that could increase the
incidence of autism, but notacetaminophine.
SPEAKER_00 (03:18):
Did did that announcement in your mind again
from a medical doctor's point ofview, do you think it was
confusing for the generalpublic?
SPEAKER_02 (03:26):
Oh, I think it was very confusing because it
actually they actually came outand said, do not use
acetaminophen during pregnancyif you can absolutely help it.
Um what we know is that womenwho have fever during pregnancy
have an increased risk ofneurodevelopmental disorders.
Uh neural tube defects isactually the biggest one that we
know about.
Okay, that's the in improperclosure of the neural tube that
(03:47):
can cause problems.
We know for an absolute factthat women who have unmanaged
fever during pregnancy,especially early pregnancy, will
have that, can have thatoutcome.
But fever by itself isimportant, so we need to treat
the fever.
So you don't want fever.
And they've actually done acouple of smaller studies that
have shown that for women whohave had an infectious illness
and with fever during earlypregnancy and taken
(04:10):
acetaminophen, they actuallyhave a reduced risk of neurotube
defects, which means treatingthe fever is probably a good
thing to do.
SPEAKER_00 (04:18):
Kendra, let me come to you and again want both of
your perspectives here.
When Boundless families see andand take in headlines like these
press conferences, statementsfrom officials in DC, et cetera,
et cetera, what do you see rightaway in terms of calls,
concerns, or maybe even panic?
And I say even panic, maybequestion mark there, um, from
(04:41):
families that are served here atBoundless.
What do you see?
SPEAKER_01 (04:44):
Sure.
What we see has been someparents reaching out with some
almost shame or guilt, feelinglike it's their fault that their
child has autism.
Um and so, yes, these sort ofheadlines are hurtful in that
way that not only is it notproven, um, but then it creates
a a false sense of guilt thatthe parents don't need to be
(05:07):
taking on, but they are.
SPEAKER_02 (05:09):
Um 100% that's a blame the victim kind of a
thing.
If it in fact there had been anassociation, there is there or a
cause and effect uh whichthere's not.
But had that been the case,that's a blame the victim
situation because women are toldto take their illnesses
seriously during pregnancy, andthe safest medication that
they're told to take isacetaminophane.
None of the research current orbefore that has ever proven that
(05:32):
to be otherwise.
So it's really, reallyunfortunate this came out.
But I but I agree.
It's really causing a lot of alot of shame and a lot of guilt
and a lot of worry in in women.
SPEAKER_00 (05:43):
Aaron Powell When a patient or a parent comes in and
they say, let's just break thisdown.
Let's break this down at theconversational level.
They say, Did did Tylenol causemy child's autism?
What do you say?
SPEAKER_02 (05:55):
I can say without a doubt that Tylenol did not cause
your child's autism.
I can 100% say that, but I wantto move for move even further
into it and say, but why do youthink it might have?
And then I can understand theperspective of where the
individual got information.
Then we go further and say,okay, so let's listen really
carefully to what it is that youheard and then break down each
(06:17):
step of that way.
Um what we don't ever want to doin a situation that's so
emotional is to just go, oh,never mind.
This, you know, forget it all.
We're just take my word for it,it's fine, right?
We really want to allow whatwhat we say in in c in uh
primary care is begin theconversation with curiosity.
Okay, so ask where did theinformation come from and get
(06:38):
specific so people really feelheard, and then you can move
into what we believe is thetruth, right?
And that can really help people.
SPEAKER_01 (06:45):
Yeah, just to follow up on that, I think going at
that, how did you hear it, whatwas the language they understood
of it, because a lot of people Ithink did hear it and think that
that meant it caused autism.
And and to your point, thatwasn't the language that was in
the article, but very much themessaging that could be conveyed
or or interpreted from it.
(07:06):
And so clarifying that languageand then what that language in
the research means and helpingthem to understand that.
SPEAKER_02 (07:13):
I really think I've been in practice for a long,
long time.
And I really think part of theproblem that we have is that we
receive information in soundbites, right?
And so um, if I think back to myearly days, um, especially in
medicine, but even just as anindividual in the community, our
news broadcasts were very, verydifferent.
You would sit and you wouldlisten and you would hear an
(07:34):
entire story before they wouldmove into the next story.
And so often so much of what wehave is social media, small
little small little bits andpieces.
Right.
And that can become frustratingbecause um then you're not sure
who's hearing what.
So, yeah, so really allowing theperson to speak and to say what
it is that they actually heard,and then ask them what their
(07:56):
thoughts and feelings are aboutit, and then move into what we
see are the facts, and then ifthe facts seem still disputed,
then to kind of continue thatconversation.
SPEAKER_00 (08:04):
Boy, you teed up seriously the very next question
that I had here, because I I andI wrote it just like this in
this world of 15-second socialmedia posts that many people
view as credible news thesedays, um, does nuance get lost?
And and of and I say thatprobably rhetorically because we
(08:24):
we know it does.
SPEAKER_01 (08:25):
Yeah, between social media, the quick sound bites,
headlines, the way things aresummarized, there is so much
depth that is lost in our in ournews and the way we absorb it.
And so to really dig into thefacts and dig into the sources
is very challenging withoutbeing very intentional and
knowing where to go and how tofind that.
SPEAKER_02 (08:47):
Let me give you an example.
So I can give a headline thatwould say, um, man dies of shark
bite in his living room, right?
That could be a very truestatement, but the truth behind
that statement would be the manwas bitten by a shark two weeks
later.
He had an infection that hehadn't been identified and he
ended up dying, and his wifefound him in his living room,
right?
(09:07):
But the actual start of that,that's actually a true
statement.
He died in his living room, hegot bit by a shark bite.
So it's really important to fillin those blanks.
SPEAKER_00 (09:16):
I heard somebody say, again, in this world that
we're living in, with a lot,let's be honest, a lot of folks
out there playing the role ofjournalists and and they're not.
But I heard somebody say thesedays people wake up instead of
looking for information, whichthey got from traditional news,
we'll call it, umpteen yearsago, instead of waking up and
(09:36):
looking for information, a lotof people now wake up and seek
confirmation.
Confirmation of what theyalready think.
Do you both see that in thisworld that you're in?
SPEAKER_02 (09:49):
Yeah, 100%.
I see that.
And even as a as a clinician, asa physician, I have to really
guard myself against that.
Because as I'm looking throughinformation, I oftentimes will
go, oh, I see, I thought thatwas right, and I'll move in that
direction, instead of trying toreally remain a really objective
observer and see both sides ofeverything so I can be that
objective observer that thatpatients really need.
SPEAKER_01 (10:11):
Yeah, definitely.
I think, and you know,technology doesn't help us,
right, in that way, because itit captures where we lean and
then it puts more of that infront of us.
And so it's easy even easier tohave that confirmation bias as
opposed to that exploratory,curious seeking all of the
information because of the waytechnology is set up, then it
(10:35):
forces us to have to really beintentional about being
objective and digging deeper.
SPEAKER_00 (10:41):
Can one or both of you share a moment, maybe over
these last several months where,again, been a lot of headlines
about autism where you sat downwith that family or sat down
with that parent, talked aboutthe research, they asked you
some questions, and then theyleft here reassured?
SPEAKER_02 (10:59):
Because we see so many, care for so many people
with autism here in Boundless,um, I have frequent um
conversations regarding autismand vaccines.
And so I've had pretty recentconversations with parents who
their children are getting intotheir teenage years and they
need another set of vaccinesthat we typically give in the
(11:21):
teenage years.
And the parents uh will say,geez, I've heard that vaccines
have caused my child's autism,and I just really don't want to
get any more vaccines for him.
And so we can have thatcuriosity conversation, where
did you hear it?
And so often when it has to dowith autism and vaccines, it's
that early age vaccines thatchildren get that parents have
(11:44):
become convinced because ofmisinformation it caused their
autism.
And so we can unpack that alittle bit and explain to them
where it comes from.
And then they and I remember Irecall a specific incident where
the parents said, okay, then Ithink it is okay for us.
I always kind of thought maybethere was a connection, but
maybe there's not a connectionto his autism and his and his
vaccine.
SPEAKER_00 (12:04):
And we covered this in a couple of episodes ago with
you right here in this very samestudio, Dr.
Ripson.
Let's maybe be even moreemphatic about uh vaccines and
what the science tells us today.
SPEAKER_02 (12:19):
Yeah.
So um in the the biggest one isin 1998, a a study came out in
the Lancet Journal, which hadbeen a pretty respected medical
journal that said um that therewas the there was a cause of the
MMR vaccine, measles, mumps,rubella, and autism.
And decades later, about twodecades later, finally they
(12:41):
uncovered the fact that thesewere actually um rogue
scientists and got paid for thatinformation.
They actually lost their licensefor having done what they did.
They had tested or supposedlytested only 12 people.
Some had already had autismbefore they got the MMR vaccine,
but they convinced the journalthat it was a legitimate study.
(13:02):
Um so it turns out that it did,there was absolutely no evidence
that the MMR vaccine causesautism, but it had made such a
splash when it came out, andit's so often, I think it's
because parents wondered what onearth happened.
My child seemed to be doing fineat age one, even at age two, not
too bad.
(13:23):
And then they here they are atthree years old, and suddenly
they're not really able to talklike their peers.
And the the one thing theythought about is maybe it was
that vaccine we gave them, andthen this journal article came
out.
Now they're convinced.
And so even in 2025, there arestill people that are convinced
that that was those were notrogue scientists.
So they it it really gripped thecommunity, the really the world,
(13:46):
because it's all of us want toknow what causes autism, right?
We're looking for something sothat we can prevent it, quite
honestly.
SPEAKER_00 (13:53):
Aaron Powell Let me ask you both this.
Can you share some reasons whyfamilies prefer to think of an
autism diagnosis in terms ofdifference instead of
disability?
SPEAKER_01 (14:02):
Sure.
I think the language arounddisability in nature says, no,
you don't have the ability to dosomething, right?
And with individuals withautism, we know it comes in many
different forms, presentsdifferently for every individual
that we work with.
And that in the midst of theautism, there are many
(14:23):
abilities.
And there are so many uniquetraits that are make them
amazing in their own way.
And so to say that it's adisability, I think undermines
the unique abilities and uniquecharacteristics that they
inherently have as individuals.
And so love the language ofdifference as opposed to
(14:45):
disability.
SPEAKER_00 (14:45):
Okay.
Love that.
SPEAKER_02 (14:46):
When you work with individuals with autism, you
understand that there is thediagnosis of autism.
There is a diagnosis ofintellectual disability, which
can be anywhere from mild tosevere to profound.
Okay.
And then there's a languagedisorder.
Some people have autism andearly on have a minimal language
disorder that they're able tomanage, but they have no
(15:07):
intellectual disability at all.
And they can actually, the, the,um, I think people who want to
look at autism as a differenceinstead of a disability are
probably not experiencing it asa disability.
They're experiencing becauseit's amazing that some
individuals with autism haveamazing creativity, able to,
(15:27):
able to think about things inways that many of us are not
able to do so.
And that makes it, in somepeople's cases, it's they make
it almost a superpower.
They talk about being asuperpower.
But those individuals who aresaying this is a difference, not
a disability, likely do not havea disability.
They likely do not have theintellectual disability or they
don't have us any uh challenginglanguage disorder.
(15:49):
So that the autism, they stillhave autism, but the autism is
not causing them to have adisability.
That's the way I look at it froma clinical perspective.
SPEAKER_00 (15:57):
When the science, let's say, has its own volume
level, but then it's drowned outby social media and the
bullhorns that that let's behonest, a a federal government
has, right?
An administration has.
SPEAKER_02 (16:45):
Right.
SPEAKER_01 (16:45):
I would say it goes back to the curiosity and
objectivity.
We all come into our work, intoour professional life with our
own beliefs and our own values.
But at the end of the day, weneed to be leaning into what
objective truth do we know?
What evidence do we have tosupport that?
And how do we do the best workwe can to support people based
(17:08):
off of what we know today?
Knowing that, yeah, hopefullyscience will give us more
answers down the road.
And in the meantime, we will beas objective and curious as we
can.
SPEAKER_00 (17:19):
Well, let's look down the road here just a little
bit.
Do you think an announcementlike this that we've been
talking about that teed up thiswhole episode, will it drive
more rigorous research or doesit risk misdirecting energy in
the appropriate research?
SPEAKER_02 (17:37):
I think it's definitely risked misdirecting
energy.
I think that the the uh impetusfor research in autism is there
already.
There are scientists across thecountry and across the world who
are doing amazing work withautism research.
I think it's become frustratingfor them to see that.
It's really become frustratingfor us as clinicians to see it.
(17:58):
And it does, it sort of takesaway some of the wind from their
sales when they're really doingreally great research.
SPEAKER_00 (18:05):
Are you worried about research?
SPEAKER_01 (18:06):
I tend to think the opposite side, where I believe,
or I'm maybe hopeful, that theuh curiosity or belief that this
is not accurate will inspiremore people to donate to
research and to get moreinvolved in advocacy around that
research in hopes that that willspark further research to to dig
(18:29):
deeper and and help get to thetruth.
SPEAKER_00 (18:31):
Let me pick up on your word advocacy there.
So, what can providers likeBoundless, what can providers
all over the country, all overthe world, do to advocate for
good science while alsosupporting families out there?
SPEAKER_02 (18:45):
Keeping the conversation open and um just
making sure that we're not umnarrowing our focus on things.
And let me give you an exampleof this um that kind of ties
into what we were just talkingabout.
So the uh announcement also cameabout uh the use of a derivative
of folic acid of uh calledleucovorin.
(19:05):
Leucavorin and folinic acid arethe same um chemical.
And there have been some studiesthat suggest that leucovorin is
a treatment for autism.
Um, and that is an overstatementof some research that has that
happened a number of years ago.
Um, so there is a deficiency inuh some people have a deficiency
(19:26):
in their brain, and thatdeficiency is called cerebral
folic um folate deficiency.
When they have that deficiency,it can interrupt language and
can do it can also have somememory impairment and some other
problems with it.
We've known for decades thatwhen you give people leukovorin
and they have this deficiency,it can help their language
impairment, it can help theirmemory.
It's absolutely something weknow.
(19:48):
We also know that people thattake cancer medications will
have a reduction in their folicacid.
If you give them leukovorin orfolic acid, that can improve
that, and so that can improvesome of the symptoms they get
from their chemotherapy.
We know all of that science.
Um, the fact that someone has alanguage disorder doesn't mean
they have autism, but peoplewith autism have a language
(20:11):
disorder.
So there's some suggestion thatpotentially using locovarin in
people with with autism couldhelp.
So that research came out of ajournal called the Journal of
Personalized Medicine, I thinksomething like that.
Probably not a real highlyrespected journal.
And it came out in about 2021with people with autism that
this may be a this may be a fixfor people with autism.
(20:32):
It would have been jumped onvery quickly had it been a
hundred percent legitimatescience, but it doesn't
necessarily mean that theremight not be a kernel of truth
in there, right?
So when people ask us, and wehave been getting calls to the
to the facility to say, when amI going to be able to get Luke
of Orange for my person, we say,well, not yet, because we're not
sure if exactly who that willwork with, but we need more
(20:54):
science behind it.
So we don't want to again shutdown the conversation, but we
want to let people know thatthere may be a kernel of truth
behind this, and we'll keepwatching for that kernel of
truth.
But until then, we're not goingto give you a medication if we
don't think it could work foryou.
SPEAKER_00 (21:10):
As we start to wrap things up, let me ask you both
this.
What is one thing you wantfamilies to know about the work
that you do and and how to findthe support that these families
need?
SPEAKER_02 (21:21):
The model that we use in our clinic is that we
take time with patients tolisten and to really listen and
to really hear them.
That model will continueregardless of anything else.
Um, as we listen, we understandwhat people actually need, and
then we can help them get theneeds that get their needs met.
SPEAKER_01 (21:38):
I would say that our approach is to be non-judgmental
and to meet them where they'reat and support them in the ways
that the individuals need, thatthe families need, and that
yeah, we are not labeling orjudging them or blaming them for
any of the the things thatthey're coming to us with or the
needs that they're having, um,and really just work to come
(21:59):
alongside them and support themthrough whatever they're needing
help with and helping to tobuild skills and increase
autonomy and independence andrelieve stress for caregivers is
really the the focus of the workthat we're doing.
SPEAKER_00 (22:15):
Staying open, staying curious.
That's that's kind of a goodmantra, kind of every day to go
into it, right?
Um, this has been a goodconversation.
Thank you both for joining us.
SPEAKER_01 (22:24):
Thank you.
Thank you.
SPEAKER_00 (22:25):
We know that science is always evolving.
Families deserve that guidance.
We've talked about that, um, andthat guidance should be clear
and compassionate and groundedin what we do know, not just in
what we fear.
So again, thanks to our twoguests today.
As always, we'll share links tosome background reading in the
show notes.
And if you found today'sconversation useful, please
(22:46):
share this episode with yourcolleagues, with family members,
friends out there who might bewrestling with these very same
questions and concerns.
Keep tuning in to hear sometimely advice and support from
our colleagues and our leadershere at Boundless and throughout
the entire health and humanservices sector.
Again, thanks for joining us,and we'll see you next time on
(23:07):
the Nonprofit Leader's GuidePodcast.
Welcome everyone to the Nonprofit Leader's Guide
Podcast brought to you byBoundless, where we explore the
intersection of policy,practice, and people's lived
experiences.
I'm your host, Scott Light.
So today we're actually bringingyou a special episode that
delves into one of the mosttalked-about and perhaps
misunderstood public healthannouncements of the year.
(00:24):
In September, the federalgovernment suggested there may
be a link betweenacetaminophane, commonly known
as Tylenol, taken duringpregnancy and then later
diagnoses of autism or ADHD inchildren.
Here at Boundless, our clinicalleaders take their role of
bringing accurate and supportiveadvice to Boundless families and
(00:44):
the community very, veryseriously.
The headlines have beenexplosive.
The science, yes, it'scomplicated.
And for families, well,sometimes they're left
wondering, what does this allmean for me or my loved one?
Should I be worried?
Should I be doing somethingdifferently?
So that's where our clinicalleadership comes in.
So we're going to try to unpacka lot here with Dr.
(01:06):
Cynthia Ripson, medicaldirector, who has a focus in
care for people with autism andneurodevelopmental differences.
Also, Kendra Hill is here, StateDirector of Behavioral Health
and Residential Treatment hereat Boundless.
Welcome to you both.
unknown (01:22):
Thank you.
SPEAKER_02 (01:22):
Good to be here.
SPEAKER_00 (01:23):
Dr.
Ripson, why don't we begin withyou?
That government announcement,they use the word association
rather than causation.
SPEAKER_02 (01:32):
The announcement suggested that people who take a
acetaminophen during a pregnancywill have an increased risk of
having their offspring haveautism.
There's been a number of studiesthat have looked at that, and
none of them have conclusivelydetermined that.
And a very large study comingout of Sweden of about two and a
half million children and theirand and the pregnancy related to
(01:56):
their birth has determined thatthat's not an actual cause.
It may be an association, butit's not a cause.
And it's important to know thatthere's a difference between an
association and a cause.
Things can be associated, butnot necessarily one causing
another.
And in this case, there is anassociation when you simply look
(02:17):
at the raw data.
But when you look deeper and yousee could there be something
else causing individuals withautism and having STM and fin as
well, and the cause that theyidentified that they believe
identified is that when you lookat the siblings of people in the
stud the original study, thathelps explain the difference.
(02:40):
Okay.
And that's a little bit trickyto understand, but the
difference is that we know thatthere is likely some, there is
definitely some geneticinfluence in autism.
And there are also probably someunderlying environmental
influences as well.
So when you take the sibling ofsomeone that has autism in this
study and you compare it and yousay, okay, acetaminefin falls
(03:05):
off the table, and there and sowe know that the problem's not
the acetaminophin.
There potentially are otherenvironmental factors that could
be complicating a pregnancy thatcould that could increase the
incidence of autism, but notacetaminophine.
SPEAKER_00 (03:18):
Did did that announcement in your mind again
from a medical doctor's point ofview, do you think it was
confusing for the generalpublic?
SPEAKER_02 (03:26):
Oh, I think it was very confusing because it
actually they actually came outand said, do not use
acetaminophen during pregnancyif you can absolutely help it.
Um what we know is that womenwho have fever during pregnancy
have an increased risk ofneurodevelopmental disorders.
Uh neural tube defects isactually the biggest one that we
know about.
Okay, that's the in improperclosure of the neural tube that
(03:47):
can cause problems.
We know for an absolute factthat women who have unmanaged
fever during pregnancy,especially early pregnancy, will
have that, can have thatoutcome.
But fever by itself isimportant, so we need to treat
the fever.
So you don't want fever.
And they've actually done acouple of smaller studies that
have shown that for women whohave had an infectious illness
and with fever during earlypregnancy and taken
(04:10):
acetaminophen, they actuallyhave a reduced risk of neurotube
defects, which means treatingthe fever is probably a good
thing to do.
SPEAKER_00 (04:18):
Kendra, let me come to you and again want both of
your perspectives here.
When Boundless families see andand take in headlines like these
press conferences, statementsfrom officials in DC, et cetera,
et cetera, what do you see rightaway in terms of calls,
concerns, or maybe even panic?
And I say even panic, maybequestion mark there, um, from
(04:41):
families that are served here atBoundless.
What do you see?
SPEAKER_01 (04:44):
Sure.
What we see has been someparents reaching out with some
almost shame or guilt, feelinglike it's their fault that their
child has autism.
Um and so, yes, these sort ofheadlines are hurtful in that
way that not only is it notproven, um, but then it creates
a a false sense of guilt thatthe parents don't need to be
(05:07):
taking on, but they are.
SPEAKER_02 (05:09):
Um 100% that's a blame the victim kind of a
thing.
If it in fact there had been anassociation, there is there or a
cause and effect uh whichthere's not.
But had that been the case,that's a blame the victim
situation because women are toldto take their illnesses
seriously during pregnancy, andthe safest medication that
they're told to take isacetaminophane.
None of the research current orbefore that has ever proven that
(05:32):
to be otherwise.
So it's really, reallyunfortunate this came out.
But I but I agree.
It's really causing a lot of alot of shame and a lot of guilt
and a lot of worry in in women.
SPEAKER_00 (05:43):
Aaron Powell When a patient or a parent comes in and
they say, let's just break thisdown.
Let's break this down at theconversational level.
They say, Did did Tylenol causemy child's autism?
What do you say?
SPEAKER_02 (05:55):
I can say without a doubt that Tylenol did not cause
your child's autism.
I can 100% say that, but I wantto move for move even further
into it and say, but why do youthink it might have?
And then I can understand theperspective of where the
individual got information.
Then we go further and say,okay, so let's listen really
carefully to what it is that youheard and then break down each
(06:17):
step of that way.
Um what we don't ever want to doin a situation that's so
emotional is to just go, oh,never mind.
This, you know, forget it all.
We're just take my word for it,it's fine, right?
We really want to allow whatwhat we say in in c in uh
primary care is begin theconversation with curiosity.
Okay, so ask where did theinformation come from and get
(06:38):
specific so people really feelheard, and then you can move
into what we believe is thetruth, right?
And that can really help people.
SPEAKER_01 (06:45):
Yeah, just to follow up on that, I think going at
that, how did you hear it, whatwas the language they understood
of it, because a lot of people Ithink did hear it and think that
that meant it caused autism.
And and to your point, thatwasn't the language that was in
the article, but very much themessaging that could be conveyed
or or interpreted from it.
(07:06):
And so clarifying that languageand then what that language in
the research means and helpingthem to understand that.
SPEAKER_02 (07:13):
I really think I've been in practice for a long,
long time.
And I really think part of theproblem that we have is that we
receive information in soundbites, right?
And so um, if I think back to myearly days, um, especially in
medicine, but even just as anindividual in the community, our
news broadcasts were very, verydifferent.
You would sit and you wouldlisten and you would hear an
(07:34):
entire story before they wouldmove into the next story.
And so often so much of what wehave is social media, small
little small little bits andpieces.
Right.
And that can become frustratingbecause um then you're not sure
who's hearing what.
So, yeah, so really allowing theperson to speak and to say what
it is that they actually heard,and then ask them what their
(07:56):
thoughts and feelings are aboutit, and then move into what we
see are the facts, and then ifthe facts seem still disputed,
then to kind of continue thatconversation.
SPEAKER_00 (08:04):
Boy, you teed up seriously the very next question
that I had here, because I I andI wrote it just like this in
this world of 15-second socialmedia posts that many people
view as credible news thesedays, um, does nuance get lost?
And and of and I say thatprobably rhetorically because we
(08:24):
we know it does.
SPEAKER_01 (08:25):
Yeah, between social media, the quick sound bites,
headlines, the way things aresummarized, there is so much
depth that is lost in our in ournews and the way we absorb it.
And so to really dig into thefacts and dig into the sources
is very challenging withoutbeing very intentional and
knowing where to go and how tofind that.
SPEAKER_02 (08:47):
Let me give you an example.
So I can give a headline thatwould say, um, man dies of shark
bite in his living room, right?
That could be a very truestatement, but the truth behind
that statement would be the manwas bitten by a shark two weeks
later.
He had an infection that hehadn't been identified and he
ended up dying, and his wifefound him in his living room,
right?
(09:07):
But the actual start of that,that's actually a true
statement.
He died in his living room, hegot bit by a shark bite.
So it's really important to fillin those blanks.
SPEAKER_00 (09:16):
I heard somebody say, again, in this world that
we're living in, with a lot,let's be honest, a lot of folks
out there playing the role ofjournalists and and they're not.
But I heard somebody say thesedays people wake up instead of
looking for information, whichthey got from traditional news,
we'll call it, umpteen yearsago, instead of waking up and
(09:36):
looking for information, a lotof people now wake up and seek
confirmation.
Confirmation of what theyalready think.
Do you both see that in thisworld that you're in?
SPEAKER_02 (09:49):
Yeah, 100%.
I see that.
And even as a as a clinician, asa physician, I have to really
guard myself against that.
Because as I'm looking throughinformation, I oftentimes will
go, oh, I see, I thought thatwas right, and I'll move in that
direction, instead of trying toreally remain a really objective
observer and see both sides ofeverything so I can be that
objective observer that thatpatients really need.
SPEAKER_01 (10:11):
Yeah, definitely.
I think, and you know,technology doesn't help us,
right, in that way, because itit captures where we lean and
then it puts more of that infront of us.
And so it's easy even easier tohave that confirmation bias as
opposed to that exploratory,curious seeking all of the
information because of the waytechnology is set up, then it
(10:35):
forces us to have to really beintentional about being
objective and digging deeper.
SPEAKER_00 (10:41):
Can one or both of you share a moment, maybe over
these last several months where,again, been a lot of headlines
about autism where you sat downwith that family or sat down
with that parent, talked aboutthe research, they asked you
some questions, and then theyleft here reassured?
SPEAKER_02 (10:59):
Because we see so many, care for so many people
with autism here in Boundless,um, I have frequent um
conversations regarding autismand vaccines.
And so I've had pretty recentconversations with parents who
their children are getting intotheir teenage years and they
need another set of vaccinesthat we typically give in the
(11:21):
teenage years.
And the parents uh will say,geez, I've heard that vaccines
have caused my child's autism,and I just really don't want to
get any more vaccines for him.
And so we can have thatcuriosity conversation, where
did you hear it?
And so often when it has to dowith autism and vaccines, it's
that early age vaccines thatchildren get that parents have
(11:44):
become convinced because ofmisinformation it caused their
autism.
And so we can unpack that alittle bit and explain to them
where it comes from.
And then they and I remember Irecall a specific incident where
the parents said, okay, then Ithink it is okay for us.
I always kind of thought maybethere was a connection, but
maybe there's not a connectionto his autism and his and his
vaccine.
SPEAKER_00 (12:04):
And we covered this in a couple of episodes ago with
you right here in this very samestudio, Dr.
Ripson.
Let's maybe be even moreemphatic about uh vaccines and
what the science tells us today.
SPEAKER_02 (12:19):
Yeah.
So um in the the biggest one isin 1998, a a study came out in
the Lancet Journal, which hadbeen a pretty respected medical
journal that said um that therewas the there was a cause of the
MMR vaccine, measles, mumps,rubella, and autism.
And decades later, about twodecades later, finally they
(12:41):
uncovered the fact that thesewere actually um rogue
scientists and got paid for thatinformation.
They actually lost their licensefor having done what they did.
They had tested or supposedlytested only 12 people.
Some had already had autismbefore they got the MMR vaccine,
but they convinced the journalthat it was a legitimate study.
(13:02):
Um so it turns out that it did,there was absolutely no evidence
that the MMR vaccine causesautism, but it had made such a
splash when it came out, andit's so often, I think it's
because parents wondered what onearth happened.
My child seemed to be doing fineat age one, even at age two, not
too bad.
(13:23):
And then they here they are atthree years old, and suddenly
they're not really able to talklike their peers.
And the the one thing theythought about is maybe it was
that vaccine we gave them, andthen this journal article came
out.
Now they're convinced.
And so even in 2025, there arestill people that are convinced
that that was those were notrogue scientists.
So they it it really gripped thecommunity, the really the world,
(13:46):
because it's all of us want toknow what causes autism, right?
We're looking for something sothat we can prevent it, quite
honestly.
SPEAKER_00 (13:53):
Aaron Powell Let me ask you both this.
Can you share some reasons whyfamilies prefer to think of an
autism diagnosis in terms ofdifference instead of
disability?
SPEAKER_01 (14:02):
Sure.
I think the language arounddisability in nature says, no,
you don't have the ability to dosomething, right?
And with individuals withautism, we know it comes in many
different forms, presentsdifferently for every individual
that we work with.
And that in the midst of theautism, there are many
(14:23):
abilities.
And there are so many uniquetraits that are make them
amazing in their own way.
And so to say that it's adisability, I think undermines
the unique abilities and uniquecharacteristics that they
inherently have as individuals.
And so love the language ofdifference as opposed to
(14:45):
disability.
SPEAKER_00 (14:45):
Okay.
Love that.
SPEAKER_02 (14:46):
When you work with individuals with autism, you
understand that there is thediagnosis of autism.
There is a diagnosis ofintellectual disability, which
can be anywhere from mild tosevere to profound.
Okay.
And then there's a languagedisorder.
Some people have autism andearly on have a minimal language
disorder that they're able tomanage, but they have no
(15:07):
intellectual disability at all.
And they can actually, the, the,um, I think people who want to
look at autism as a differenceinstead of a disability are
probably not experiencing it asa disability.
They're experiencing becauseit's amazing that some
individuals with autism haveamazing creativity, able to,
(15:27):
able to think about things inways that many of us are not
able to do so.
And that makes it, in somepeople's cases, it's they make
it almost a superpower.
They talk about being asuperpower.
But those individuals who aresaying this is a difference, not
a disability, likely do not havea disability.
They likely do not have theintellectual disability or they
don't have us any uh challenginglanguage disorder.
(15:49):
So that the autism, they stillhave autism, but the autism is
not causing them to have adisability.
That's the way I look at it froma clinical perspective.
SPEAKER_00 (15:57):
When the science, let's say, has its own volume
level, but then it's drowned outby social media and the
bullhorns that that let's behonest, a a federal government
has, right?
An administration has.
SPEAKER_02 (16:45):
Right.
SPEAKER_01 (16:45):
I would say it goes back to the curiosity and
objectivity.
We all come into our work, intoour professional life with our
own beliefs and our own values.
But at the end of the day, weneed to be leaning into what
objective truth do we know?
What evidence do we have tosupport that?
And how do we do the best workwe can to support people based
(17:08):
off of what we know today?
Knowing that, yeah, hopefullyscience will give us more
answers down the road.
And in the meantime, we will beas objective and curious as we
can.
SPEAKER_00 (17:19):
Well, let's look down the road here just a little
bit.
Do you think an announcementlike this that we've been
talking about that teed up thiswhole episode, will it drive
more rigorous research or doesit risk misdirecting energy in
the appropriate research?
SPEAKER_02 (17:37):
I think it's definitely risked misdirecting
energy.
I think that the the uh impetusfor research in autism is there
already.
There are scientists across thecountry and across the world who
are doing amazing work withautism research.
I think it's become frustratingfor them to see that.
It's really become frustratingfor us as clinicians to see it.
(17:58):
And it does, it sort of takesaway some of the wind from their
sales when they're really doingreally great research.
SPEAKER_00 (18:05):
Are you worried about research?
SPEAKER_01 (18:06):
I tend to think the opposite side, where I believe,
or I'm maybe hopeful, that theuh curiosity or belief that this
is not accurate will inspiremore people to donate to
research and to get moreinvolved in advocacy around that
research in hopes that that willspark further research to to dig
(18:29):
deeper and and help get to thetruth.
SPEAKER_00 (18:31):
Let me pick up on your word advocacy there.
So, what can providers likeBoundless, what can providers
all over the country, all overthe world, do to advocate for
good science while alsosupporting families out there?
SPEAKER_02 (18:45):
Keeping the conversation open and um just
making sure that we're not umnarrowing our focus on things.
And let me give you an exampleof this um that kind of ties
into what we were just talkingabout.
So the uh announcement also cameabout uh the use of a derivative
of folic acid of uh calledleucovorin.
(19:05):
Leucavorin and folinic acid arethe same um chemical.
And there have been some studiesthat suggest that leucovorin is
a treatment for autism.
Um, and that is an overstatementof some research that has that
happened a number of years ago.
Um, so there is a deficiency inuh some people have a deficiency
(19:26):
in their brain, and thatdeficiency is called cerebral
folic um folate deficiency.
When they have that deficiency,it can interrupt language and
can do it can also have somememory impairment and some other
problems with it.
We've known for decades thatwhen you give people leukovorin
and they have this deficiency,it can help their language
impairment, it can help theirmemory.
It's absolutely something weknow.
(19:48):
We also know that people thattake cancer medications will
have a reduction in their folicacid.
If you give them leukovorin orfolic acid, that can improve
that, and so that can improvesome of the symptoms they get
from their chemotherapy.
We know all of that science.
Um, the fact that someone has alanguage disorder doesn't mean
they have autism, but peoplewith autism have a language
(20:11):
disorder.
So there's some suggestion thatpotentially using locovarin in
people with with autism couldhelp.
So that research came out of ajournal called the Journal of
Personalized Medicine, I thinksomething like that.
Probably not a real highlyrespected journal.
And it came out in about 2021with people with autism that
this may be a this may be a fixfor people with autism.
(20:32):
It would have been jumped onvery quickly had it been a
hundred percent legitimatescience, but it doesn't
necessarily mean that theremight not be a kernel of truth
in there, right?
So when people ask us, and wehave been getting calls to the
to the facility to say, when amI going to be able to get Luke
of Orange for my person, we say,well, not yet, because we're not
sure if exactly who that willwork with, but we need more
(20:54):
science behind it.
So we don't want to again shutdown the conversation, but we
want to let people know thatthere may be a kernel of truth
behind this, and we'll keepwatching for that kernel of
truth.
But until then, we're not goingto give you a medication if we
don't think it could work foryou.
SPEAKER_00 (21:10):
As we start to wrap things up, let me ask you both
this.
What is one thing you wantfamilies to know about the work
that you do and and how to findthe support that these families
need?
SPEAKER_02 (21:21):
The model that we use in our clinic is that we
take time with patients tolisten and to really listen and
to really hear them.
That model will continueregardless of anything else.
Um, as we listen, we understandwhat people actually need, and
then we can help them get theneeds that get their needs met.
SPEAKER_01 (21:38):
I would say that our approach is to be non-judgmental
and to meet them where they'reat and support them in the ways
that the individuals need, thatthe families need, and that
yeah, we are not labeling orjudging them or blaming them for
any of the the things thatthey're coming to us with or the
needs that they're having, um,and really just work to come
(21:59):
alongside them and support themthrough whatever they're needing
help with and helping to tobuild skills and increase
autonomy and independence andrelieve stress for caregivers is
really the the focus of the workthat we're doing.
SPEAKER_00 (22:15):
Staying open, staying curious.
That's that's kind of a goodmantra, kind of every day to go
into it, right?
Um, this has been a goodconversation.
Thank you both for joining us.
SPEAKER_01 (22:24):
Thank you.
Thank you.
SPEAKER_00 (22:25):
We know that science is always evolving.
Families deserve that guidance.
We've talked about that, um, andthat guidance should be clear
and compassionate and groundedin what we do know, not just in
what we fear.
So again, thanks to our twoguests today.
As always, we'll share links tosome background reading in the
show notes.
And if you found today'sconversation useful, please
(22:46):
share this episode with yourcolleagues, with family members,
friends out there who might bewrestling with these very same
questions and concerns.
Keep tuning in to hear sometimely advice and support from
our colleagues and our leadershere at Boundless and throughout
the entire health and humanservices sector.
Again, thanks for joining us,and we'll see you next time on
(23:07):
the Nonprofit Leader's GuidePodcast.
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