August 4, 2025 • 26 mins
What happens when an entire community of experts says the thing you're studying doesn't actually exist?
In this investigative deep-dive, Anita examines the Broad Autism Phenotype (BAP) - a widely accepted scientific concept claiming autism-related traits exist on a continuum in families. But when autistic researchers were finally asked what they thought, their responses should have revolutionized the field.
Join Anita as she unravels the story of twenty autistic researchers, a survey that challenged decades of genetic studies, and Nick Chown's groundbreaking question: Are "autistic traits" real or mythical?
This episode reveals:
- Why do BAP prevalence estimates range wildly from 2.6% to 80%
- How researchers use "autistic traits" without defining the term
- What autistic scholars actually think about this research
- Why do the same behaviors get pathologized in some contexts but not others
- An alternative explanation that could change everything
"Everyone stims, but we only call it that and pathologize it when certain neurodiverse people do it." - Alyssa Hillary, autistic researcher
This isn't just about one research concept - it's about whose voices get heard in science, what happens when communities challenge established narratives, and why we need research WITH autistic people, not just ON them.
The broad autism phenotype might be a phantom, but autistic community wisdom is very real.
Content note: Discussion of genetic research and pathologization of traits.
Thank you for listening to Neuro Rebel — the bilingual podcast where we flip the script on what it means to think differently. I’m your host, Anita: autistic, gifted, and a retired law professor on a mission to bring rigor, empathy, and a dash of rebellion to conversations about neurodiversity.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Neurorebelpodcast (00:03):
Have you ever had one of those moments where
something that sounds perfectlyreasonable suddenly doesn't?
I had one recently while readingautism research.
I kept encountering this conceptcalled the broad autism
phenotype, and what I discoveredwas a story about 20 autistic
(00:25):
researchers, a survey thatshould have been front-page
news, and a question that mightchange how we think about autism
entirely.
I'm Anita, and this is NeuroRebel.
(00:46):
Welcome to Neuro Rebel, thepodcast that challenges
conventional narratives aboutneurodivergence with
research-informed analysis andunapologetic authenticity.
I am your host, Anita.
I'm autistic, a gifted retiredlaw professor, and a proud
resident of Mexico, where Icreate content that bridges
(01:08):
academic rigor with livedexperience.
If this is your first time here,welcome to our community of
Critical Thinkers and rebels.
We don't do inspiration porn, wedon't oversimplify, and we
definitely don't romanticizeneurodivergence.
Instead, we deep dive into thescience, challenge the
(01:30):
assumptions, and center thevoices that matter most: ours.
Before we begin today'sinvestigation, a quick favor.
If this podcast adds value toyour life, please take 30
seconds to follow or subscribeon your platform of choice.
Share it with someone who needsto hear these conversations.
(01:52):
Leave a review, and if you'refeeling generous, it helps other
people find us in thealgorithmic wilderness.
If you want to support usfinancially, you can find links
to do so in the show notes.
Now, let's get rebellious.
The concept I stumbled across iscalled the broad Autism
(02:14):
Phenotype, or BAP for short.
And on the surface, it madecomplete sense.
The idea is elegantly simple.
Autism runs in families, sofamily members of autistic
people might have whatresearchers call subclinical
autistic traits.
You know the picture.
(02:35):
Maybe a parent who's always beena bit awkward socially has
intense interests that border onobsessive or shows some rigid
thinking patterns.
Not quite enough for an autismdiagnosis, but definitely
something.
Geneticists love this conceptbecause it suggests autism
(02:57):
exists on a continuum.
That these traits represent whatthey call genetic liability for
the condition.
Reasonable, right?
I thought so too.
The research seemed solid, twinstudies showing high
heritability, family studiesdocumenting elevated traits in
(03:19):
relatives, even brain imagingstudies showing neurological
differences in family memberswho display these
characteristics.
But then I started diggingdeeper, and what I found was a
story about the gap between whatscience claims to discover and
(03:39):
what communities already know tobe true.
Today we're going detective.
We're going to examine ascientific concept that has
shaped how we think aboutautism, genetics, influenced
genetic counseling practices,and potentially pathologized
(04:00):
normal human variation on amassive scale.
And we're going to ask a simplequestion: what happens when an
entire community of experts.
That is, autistic researcherssay the thing you're studying
doesn't actually exist.
Let me paint you a more detailedpicture of how the broad autism
(04:23):
phenotype typically getspresented in research and
clinical settings.
The story usually goes likethis.
Leo Kanner, who first describedautism in 1943 noticed that
parents of autistic childrenoften seemed to share certain
characteristics.
They were, in his words,strongly preoccupied with
(04:46):
abstractions of a scientific,literary, or artistic nature and
limited in genuine interest inpeople.
Fast forward 80 years.
And this casual observation hasevolved into a major research
enterprise.
Modern.
BAP research focuses on threemain domains that mirror the
autism diagnostic criteria: social communication challenges. (05:09):
undefined
Restricted interests andrepetitive behaviors and what
researchers call,diplomatically, the rigid
personality traits.
The idea is that family membersof autistic individuals show
these characteristics at higherrates than the general
(05:32):
population, but at subclinicallevels.
The genetic evidence supportingthis concept is genuinely
impressive.
Twin studies consistently showheritability estimates for
autism approaching 90%.
Recent polygenic score studies,that is where researchers
(05:52):
aggregate the effects ofthousands of genetic variants,
can predict not only autismdiagnosis, but also these
subclinical traits in familymembers.
Neuroimaging studies have foundstructural and functional brain
differences in relatives whoshow BAP characteristics.
(06:14):
Now, as someone who spentdecades in academia before
transitioning to advocacy, Iknow how seductive this kind of
converging evidence can be.
When multiple methodologicalapproaches, that is, genetics,
brain imaging, behavioralassessment, all point in the
same direction, it creates whatwe call scientific consensus.
(06:38):
But here's where my dualidentity as both an academic and
an autistic person created aninteresting tension.
The more I read about BAP, themore something felt off.
Not wrong.
Exactly.
But incomplete, like looking ata magic trick where you can see
(06:59):
all the moves, but still can'tfigure out how the rabbit got
into the hat.
The first red flag wasmethodological.
A systematic review published in2018 found that prevalence
estimates for BAP ranged from2.6% to 80% across different
(07:21):
studies.
Let me repeat that.
2.6% to 80%.
Now, I don't know about you, butwhen I see a methodological
variation like that, my academicalarm bell starts ringing.
That's not a measurement of astable biological phenomenon.
(07:44):
That's methodological chaos.
But the more I dug.
The more I encounteredsomething, even more troubling.
Definitional ambiguity.
Despite hundreds of researchpapers using the term autistic
traits, there was remarkablylittle effort to define what
researchers actually meant bythis term.
(08:07):
Think about it for a moment, ifyou're going to build an entire
research program aroundmeasuring autistic traits in the
general population.
Shouldn't you start by clearlydefining what is an autistic
trait or what makes a traitautistic?
You would think so, but paperafter paper simply assumed
(08:31):
readers would understand theconcept without an explanation,
without a definition.
This isn't just academicnitpicking; if we can't clearly
define what we are measuring,how can we be confident we're
measuring anything meaningful atall?
It's like trying to studytallness without defining what
(08:53):
height threshold makes someonetall.
And that's when I rememberedsomething: a mentor once told me
that when the experts disagree,find out what the people living
the experience have to say,which led me to ask a question
that frankly should have beenasked decades ago.
What do autistic researchersthink about this concept?
(09:17):
Turns out someone had asked thatquestion, that very same
question, an autisticindependent scholar named Nick
Chown published what should havebeen a paradigm- shifting paper
in 2019.
The title alone should have madeevery BAP researcher pause.
(09:38):
The title?
Are the Autistic Traits andBroader Autism Phenotype
Concepts Real or Mythical?
Now, Nick Chown isn't somerandom blogger with an opinion.
He's a scholar with deepexpertise in autism research
methodology, and he approachedthis question with the kind of
(09:59):
systematic rigor that makesacademics weep with joy.
What made his analysisparticularly powerful was his
insider knowledge.
He is autistic himself, so heunderstood both the research and
the lived experience it claimedto represent.
(10:20):
Chown did something that wassimultaneously brilliant and
simple.
He looked at how researchersactually used the term autistic
traits and analyzed whether ithad any coherent meaning.
What Chown discovered wasstartling.
Despite being used in hundredsof research papers, the term
(10:42):
autistic traits was almost neverexplicitly defined.
Researchers were engaging inwhat he called a language of
gain.
Everyone assumed everyone elseknew what they meant, but nobody
actually spelled it out.
This isn't just semantichair-splitting; language shapes
(11:06):
thought, and unclear languageleads to unclear thinking.
When researchers use terms likeautistic traits, without
definition, they're makingimplicit assumptions about the
nature of autism that may not bevalid.
But Chown didn't stop atlinguistic analysis.
(11:28):
He did something that franklyshould be standard practice in
autism research, but rarelyhappens.
He asked autistic researcherswhat they thought about the
concept their non-autisticcolleagues were studying.
Chown surveyed 20 autisticautism researchers, people with
(11:50):
both lived experience andacademic expertise.
These weren't random communitymembers.
These were scholars withadvanced degrees, published
research, and a deepunderstanding of autism
literature.
The question he asked them wasdeceptively simple.
Do autistic traits exist as adiscrete and measurable entity?
(12:13):
The responses he got should havesent shockwaves through the
autism research community.
But before I share what theysaid, let me ask you something
that might help you understandwhy their answers were so
significant.
Think about behaviors you mightconsider as autistic traits.
(12:33):
I don't know, maybe stimmingrepetitive movements or sounds,
difficulty with eye contact orintense focused interests,
perhaps preference for routineand predictability, or a need
for quiet, low stimulationenvironments.
Got those in mind?
(12:53):
Okay.
Now here's the question thatchanged everything for me.
Are any of those behaviorsactually unique to autistic
people?
Take stimming for example, doonly autistic people fidget, tap
their feet, play with theirhair, or engage in repetitive
movements?
Of course not.
(13:14):
Neurotypical people stimconstantly.
They just don't call it stimmingand nobody pathologizes it when
they do it.
What about intense interests?
Are autistic people the onlyones who become deeply absorbed
in specific topics, collectdetailed information, or spend
hours engaged with theirpassions?
(13:37):
Obviously not.
When neurotypical people dothis, we call them enthusiasts
or experts or passionate, butwhen autistic people do it, it
becomes a restricted interestthat needs intervention.
Do you see the pattern emerging?
Another autism researcher, LukeBearden crystallized this
(14:01):
insight perfectly.
He observed that there is nosuch thing as autistic behavior.
There is no single behavior orset of behaviors displayed by
autistic people that can't beseen in non-autistic people.
Think about that for a moment.
Think about the profoundimplication of that statement.
(14:22):
If there are no behaviors thatare unique to autism, then what
exactly are researchersmeasuring when they assess
autistic traits in familymembers?
What makes a trait autisticversus just human?
(14:42):
Now I can share with you whatthose 20 autistic researchers
told Chown and why theirresponses should have
revolutionized how we thinkabout BAP research.
Alyssa Hillary from theUniversity of Rhode Island
provided perhaps the clearestarticulation.
She said, using your definition,I'd say there is no such thing
(15:07):
as autistic traits or autismtraits.
They just don't exist.
I don't think there are anyuniversal traits of the type you
described that you can ascribeto autistic people.
There is no such thing as anaction that's unique to autism.
Everyone stims, but we only callit that and pathologize it when
(15:29):
certain neurodiverse people doit.
Let that sink in for a moment.
A researcher with both livedexperience and academic
expertise is saying that thefundamental concept underlying
decades of BAP research, thatidea of measurable autistic
traits, doesn't actually exist.
(15:52):
But it gets more interesting.
Other survey respondents notedthe cultural and social
construction aspects of traitidentification.
Several pointed out that thesame behaviors are interpreted
differently depending on whoexhibits them.
When displayed by someonealready labeled as autistic or
(16:14):
from an autistic family,behaviors become autistic
traits, but when displayed byothers, they're just personality
quirks or individualdifferences.
Yes.
Do you see what's happeninghere?
We're not measuring biologicalphenomena.
We are measuring social labelingprocesses.
(16:38):
The broader autism phenotypemight actually be documenting
how we selectively pathologizenormal human variation when it
occurs in certain contexts.
This has profound implicationsfor all that impressive genetic
and neuroimaging research Imentioned earlier.
(16:58):
If the traits being measuredaren't actually distinctly
autistic, but rather normalhuman variations that get
labeled differently in differentcontexts, then what exactly have
those studies been documenting?
But Chown proposed somethingeven more revolutionary.
(17:18):
What if the evidence typicallycited to support BAP isn't
actually evidence forsubclinical traits at all?
What if it's evidence thatautism is more common than we
currently recognize?
Think about that.
What if many individuals labeledas having subclinical autistic
(17:39):
traits are actually autistic,but undiagnosed?
What if BAP research has beendocumenting the presence of
additional autistic people andfamilies already affected by
autism, rather than documentinggenetic liability for
subclinical traits.
This alternative explanationwould account for so much.
(18:02):
The familial clustering oftraits, the high heritability
estimates, the neuroimagingdifferences, even the wildly
variable prevalence estimates.
Different studies might becapturing different proportions
of undiagnosed autisticindividuals depending on their
methodology and population.
(18:25):
This explanation becomes evenmore compelling when you
consider the historical contextof autism diagnosis.
We know that autism has beensystematically underdiagnosed in
women and people of color andindividuals without intellectual
disabilities, and in people whodeveloped effective masking
(18:46):
strategies.
Many autistic adults describerecognizing their own autism
only after their children werediagnosed.
Rather than representingsubclinical traits, these
patterns might simply reflectthe intergenerational
transmission of autism infamilies where it has been
(19:06):
historically overlooked.
The possibility that BAP traitsrepresent undiagnosed autism
rather than some clinicalphenotypes isn't just
academically interesting.
It's personally and politicallysignificant.
It shifts the narrative fromgenetic liability for pathology
(19:29):
to unrecognized neurodiversity.
So what does this mean forscience?
Where does this investigationleave us?
I think it reveals somethingprofound about how scientific
knowledge gets constructed andwhose voices get heard in that
process.
(19:50):
The BAP story isn't just aboutone research concept gone awry.
It's a case study in whathappens when research proceeds
without meaningful input fromthe communities being studied.
It's about the differencebetween studying people and
studying with people.
For decades, researchers havebeen measuring, categorizing and
(20:13):
theorizing about traits inautistic families without
centering the perspective ofautistic people themselves.
When autistic researchersfinally got asked what they
thought about the fundamentalconcept underlying this
research, their response wasessentially, this doesn't exist
(20:34):
the way you think it does.
The methodological implicationsare staggering.
If the critique is correct, thenhundreds of studies, millions of
dollars in research funding.
An entire theoretical frameworksmay be based on a conceptual
error, not fraud.
(20:56):
Not bad science in thetraditional sense, but a
fundamental misunderstanding ofwhat was being measured.
This raises uncomfortablequestions about research quality
control.
How did a concept with suchfundamental definitional
problems become so widelyaccepted?
(21:16):
Why wasn't community inputsought earlier?
What other research conceptsmight benefit from similar
scrutiny?
But beyond the academicimplications?
This has real-world consequencesfor autistic people and their
families.
BAP research has influencedgenetic counseling practices,
(21:39):
shaped how families understandthemselves, and contributed to
conversations about autismprevention.
If the neurodiversity critiqueis correct, if these so-called
subclinical traits actuallyrepresent normal human variation
or undiagnosed autism, thenframing them as genetic
(22:01):
liability becomes not justscientifically questionable, but
ethically problematic.
The language of geneticliability implies that these
characteristics are undesirable.
That they represent risks to bemanaged rather than differences
to be understood andaccommodated.
(22:24):
But here's what gives me hopeand why I wanted to share this
investigation with you.
The same research that has beenused to support BAP actually
points towards something muchmore interesting and affirming.
What if autistic traits aren'tdeficits or liabilities at all?
(22:45):
But simply variations in humanneurological functioning.
What if the genetic findingsdon't document pathology, but
rather the heritability ofneurodivergent ways of being?
What if instead of trying toprevent or predict autism, we
focused on understanding andsupporting the autistic people
(23:06):
who are already here.
Imagine autism research thatstarts with autistic experiences
instead of trying to explainthem away, or research that
asks, How can we create moreaccessible environments instead
of How can we make autisticpeople more normal?
Or research that views autistictraits as potentially valuable
(23:29):
contributions to human diversityrather than problems to be
solved.
If you take one thing from thisinvestigation, let it be this.
The next time you encounterautism research or really any
research about marginalizedcommunities, ask yourself some
questions.
(23:49):
Who was included in designingthis study?
Who was included in interpretingthe results, whose voices were
centered and whose voices weremarginalized?
Demand that research include thecommunities it studies as
partners, not just subjects.
Support researchers who aremembers of the communities they
(24:11):
study.
Question, research thatpathologizes difference without
considering alternativeexplanations.
And for my autistic listenersspecifically, trust your
instincts about research thatdoesn't ring true to your
experience.
Your lived experience matters.
(24:31):
Your perspectives are valuable.
The fact that you've beenexcluded from much of the
research about you doesn't makethat research more objective.
It makes it incomplete.
I started this investigationthinking I was examining a
scientific concept.
I thought I was gonna learnsomething new.
(24:54):
I ended up discovering somethingmuch more important.
I did discover something newthat the power of community
knowledge and the courage ofresearchers willing to question
established narratives can makea world of difference.
The broad autism phenotype mightindeed be a phantom, but the
(25:14):
autistic community's wisdom isvery real and it's time the
research world startedlistening.
You've been listening to NeuroRebel.
(25:34):
And I'm your host, Anita.
If this episode challenged yourthinking, validated your
experiences, or simply gave yousomething to ponder, please
share it with someone who needsto hear it.
Our next episode will explorehow these same concepts are
being exported to Latin Americancontexts often inappropriately.
(25:57):
We'll examine scientific,colonialism, cultural adaptation
of research, and why globalneurodiversity advocacy must be
culturally responsive.
You can find show notes,transcripts, and additional
resources@neurorebelpodcast.com.
Follow us on social media.
We're@neurorebelpodcast forupdates and continued
(26:20):
conversation.
And if this work adds value toyour life, consider supporting
it financially through the linksin our show notes.
Remember, we don't need to befixed or cured or prevented.
We need to be understood,supported, and valued for who we
are until the next time, thankyou so much for listening.
(26:43):
Keep questioning, keepchallenging, and keep being
beautifully unapologetically,neurodivergent.
This has been neuro rebel.
Have you ever had one of those moments where
something that sounds perfectlyreasonable suddenly doesn't?
I had one recently while readingautism research.
I kept encountering this conceptcalled the broad autism
phenotype, and what I discoveredwas a story about 20 autistic
(00:25):
researchers, a survey thatshould have been front-page
news, and a question that mightchange how we think about autism
entirely.
I'm Anita, and this is NeuroRebel.
(00:46):
Welcome to Neuro Rebel, thepodcast that challenges
conventional narratives aboutneurodivergence with
research-informed analysis andunapologetic authenticity.
I am your host, Anita.
I'm autistic, a gifted retiredlaw professor, and a proud
resident of Mexico, where Icreate content that bridges
(01:08):
academic rigor with livedexperience.
If this is your first time here,welcome to our community of
Critical Thinkers and rebels.
We don't do inspiration porn, wedon't oversimplify, and we
definitely don't romanticizeneurodivergence.
Instead, we deep dive into thescience, challenge the
(01:30):
assumptions, and center thevoices that matter most: ours.
Before we begin today'sinvestigation, a quick favor.
If this podcast adds value toyour life, please take 30
seconds to follow or subscribeon your platform of choice.
Share it with someone who needsto hear these conversations.
(01:52):
Leave a review, and if you'refeeling generous, it helps other
people find us in thealgorithmic wilderness.
If you want to support usfinancially, you can find links
to do so in the show notes.
Now, let's get rebellious.
The concept I stumbled across iscalled the broad Autism
(02:14):
Phenotype, or BAP for short.
And on the surface, it madecomplete sense.
The idea is elegantly simple.
Autism runs in families, sofamily members of autistic
people might have whatresearchers call subclinical
autistic traits.
You know the picture.
(02:35):
Maybe a parent who's always beena bit awkward socially has
intense interests that border onobsessive or shows some rigid
thinking patterns.
Not quite enough for an autismdiagnosis, but definitely
something.
Geneticists love this conceptbecause it suggests autism
(02:57):
exists on a continuum.
That these traits represent whatthey call genetic liability for
the condition.
Reasonable, right?
I thought so too.
The research seemed solid, twinstudies showing high
heritability, family studiesdocumenting elevated traits in
(03:19):
relatives, even brain imagingstudies showing neurological
differences in family memberswho display these
characteristics.
But then I started diggingdeeper, and what I found was a
story about the gap between whatscience claims to discover and
(03:39):
what communities already know tobe true.
Today we're going detective.
We're going to examine ascientific concept that has
shaped how we think aboutautism, genetics, influenced
genetic counseling practices,and potentially pathologized
(04:00):
normal human variation on amassive scale.
And we're going to ask a simplequestion: what happens when an
entire community of experts.
That is, autistic researcherssay the thing you're studying
doesn't actually exist.
Let me paint you a more detailedpicture of how the broad autism
(04:23):
phenotype typically getspresented in research and
clinical settings.
The story usually goes likethis.
Leo Kanner, who first describedautism in 1943 noticed that
parents of autistic childrenoften seemed to share certain
characteristics.
They were, in his words,strongly preoccupied with
(04:46):
abstractions of a scientific,literary, or artistic nature and
limited in genuine interest inpeople.
Fast forward 80 years.
And this casual observation hasevolved into a major research
enterprise.
Modern.
BAP research focuses on threemain domains that mirror the
autism diagnostic criteria: social communication challenges. (05:09):
undefined
Restricted interests andrepetitive behaviors and what
researchers call,diplomatically, the rigid
personality traits.
The idea is that family membersof autistic individuals show
these characteristics at higherrates than the general
(05:32):
population, but at subclinicallevels.
The genetic evidence supportingthis concept is genuinely
impressive.
Twin studies consistently showheritability estimates for
autism approaching 90%.
Recent polygenic score studies,that is where researchers
(05:52):
aggregate the effects ofthousands of genetic variants,
can predict not only autismdiagnosis, but also these
subclinical traits in familymembers.
Neuroimaging studies have foundstructural and functional brain
differences in relatives whoshow BAP characteristics.
(06:14):
Now, as someone who spentdecades in academia before
transitioning to advocacy, Iknow how seductive this kind of
converging evidence can be.
When multiple methodologicalapproaches, that is, genetics,
brain imaging, behavioralassessment, all point in the
same direction, it creates whatwe call scientific consensus.
(06:38):
But here's where my dualidentity as both an academic and
an autistic person created aninteresting tension.
The more I read about BAP, themore something felt off.
Not wrong.
Exactly.
But incomplete, like looking ata magic trick where you can see
(06:59):
all the moves, but still can'tfigure out how the rabbit got
into the hat.
The first red flag wasmethodological.
A systematic review published in2018 found that prevalence
estimates for BAP ranged from2.6% to 80% across different
(07:21):
studies.
Let me repeat that.
2.6% to 80%.
Now, I don't know about you, butwhen I see a methodological
variation like that, my academicalarm bell starts ringing.
That's not a measurement of astable biological phenomenon.
(07:44):
That's methodological chaos.
But the more I dug.
The more I encounteredsomething, even more troubling.
Definitional ambiguity.
Despite hundreds of researchpapers using the term autistic
traits, there was remarkablylittle effort to define what
researchers actually meant bythis term.
(08:07):
Think about it for a moment, ifyou're going to build an entire
research program aroundmeasuring autistic traits in the
general population.
Shouldn't you start by clearlydefining what is an autistic
trait or what makes a traitautistic?
You would think so, but paperafter paper simply assumed
(08:31):
readers would understand theconcept without an explanation,
without a definition.
This isn't just academicnitpicking; if we can't clearly
define what we are measuring,how can we be confident we're
measuring anything meaningful atall?
It's like trying to studytallness without defining what
(08:53):
height threshold makes someonetall.
And that's when I rememberedsomething: a mentor once told me
that when the experts disagree,find out what the people living
the experience have to say,which led me to ask a question
that frankly should have beenasked decades ago.
What do autistic researchersthink about this concept?
(09:17):
Turns out someone had asked thatquestion, that very same
question, an autisticindependent scholar named Nick
Chown published what should havebeen a paradigm- shifting paper
in 2019.
The title alone should have madeevery BAP researcher pause.
(09:38):
The title?
Are the Autistic Traits andBroader Autism Phenotype
Concepts Real or Mythical?
Now, Nick Chown isn't somerandom blogger with an opinion.
He's a scholar with deepexpertise in autism research
methodology, and he approachedthis question with the kind of
(09:59):
systematic rigor that makesacademics weep with joy.
What made his analysisparticularly powerful was his
insider knowledge.
He is autistic himself, so heunderstood both the research and
the lived experience it claimedto represent.
(10:20):
Chown did something that wassimultaneously brilliant and
simple.
He looked at how researchersactually used the term autistic
traits and analyzed whether ithad any coherent meaning.
What Chown discovered wasstartling.
Despite being used in hundredsof research papers, the term
(10:42):
autistic traits was almost neverexplicitly defined.
Researchers were engaging inwhat he called a language of
gain.
Everyone assumed everyone elseknew what they meant, but nobody
actually spelled it out.
This isn't just semantichair-splitting; language shapes
(11:06):
thought, and unclear languageleads to unclear thinking.
When researchers use terms likeautistic traits, without
definition, they're makingimplicit assumptions about the
nature of autism that may not bevalid.
But Chown didn't stop atlinguistic analysis.
(11:28):
He did something that franklyshould be standard practice in
autism research, but rarelyhappens.
He asked autistic researcherswhat they thought about the
concept their non-autisticcolleagues were studying.
Chown surveyed 20 autisticautism researchers, people with
(11:50):
both lived experience andacademic expertise.
These weren't random communitymembers.
These were scholars withadvanced degrees, published
research, and a deepunderstanding of autism
literature.
The question he asked them wasdeceptively simple.
Do autistic traits exist as adiscrete and measurable entity?
(12:13):
The responses he got should havesent shockwaves through the
autism research community.
But before I share what theysaid, let me ask you something
that might help you understandwhy their answers were so
significant.
Think about behaviors you mightconsider as autistic traits.
(12:33):
I don't know, maybe stimmingrepetitive movements or sounds,
difficulty with eye contact orintense focused interests,
perhaps preference for routineand predictability, or a need
for quiet, low stimulationenvironments.
Got those in mind?
(12:53):
Okay.
Now here's the question thatchanged everything for me.
Are any of those behaviorsactually unique to autistic
people?
Take stimming for example, doonly autistic people fidget, tap
their feet, play with theirhair, or engage in repetitive
movements?
Of course not.
(13:14):
Neurotypical people stimconstantly.
They just don't call it stimmingand nobody pathologizes it when
they do it.
What about intense interests?
Are autistic people the onlyones who become deeply absorbed
in specific topics, collectdetailed information, or spend
hours engaged with theirpassions?
(13:37):
Obviously not.
When neurotypical people dothis, we call them enthusiasts
or experts or passionate, butwhen autistic people do it, it
becomes a restricted interestthat needs intervention.
Do you see the pattern emerging?
Another autism researcher, LukeBearden crystallized this
(14:01):
insight perfectly.
He observed that there is nosuch thing as autistic behavior.
There is no single behavior orset of behaviors displayed by
autistic people that can't beseen in non-autistic people.
Think about that for a moment.
Think about the profoundimplication of that statement.
(14:22):
If there are no behaviors thatare unique to autism, then what
exactly are researchersmeasuring when they assess
autistic traits in familymembers?
What makes a trait autisticversus just human?
(14:42):
Now I can share with you whatthose 20 autistic researchers
told Chown and why theirresponses should have
revolutionized how we thinkabout BAP research.
Alyssa Hillary from theUniversity of Rhode Island
provided perhaps the clearestarticulation.
She said, using your definition,I'd say there is no such thing
(15:07):
as autistic traits or autismtraits.
They just don't exist.
I don't think there are anyuniversal traits of the type you
described that you can ascribeto autistic people.
There is no such thing as anaction that's unique to autism.
Everyone stims, but we only callit that and pathologize it when
(15:29):
certain neurodiverse people doit.
Let that sink in for a moment.
A researcher with both livedexperience and academic
expertise is saying that thefundamental concept underlying
decades of BAP research, thatidea of measurable autistic
traits, doesn't actually exist.
(15:52):
But it gets more interesting.
Other survey respondents notedthe cultural and social
construction aspects of traitidentification.
Several pointed out that thesame behaviors are interpreted
differently depending on whoexhibits them.
When displayed by someonealready labeled as autistic or
(16:14):
from an autistic family,behaviors become autistic
traits, but when displayed byothers, they're just personality
quirks or individualdifferences.
Yes.
Do you see what's happeninghere?
We're not measuring biologicalphenomena.
We are measuring social labelingprocesses.
(16:38):
The broader autism phenotypemight actually be documenting
how we selectively pathologizenormal human variation when it
occurs in certain contexts.
This has profound implicationsfor all that impressive genetic
and neuroimaging research Imentioned earlier.
(16:58):
If the traits being measuredaren't actually distinctly
autistic, but rather normalhuman variations that get
labeled differently in differentcontexts, then what exactly have
those studies been documenting?
But Chown proposed somethingeven more revolutionary.
(17:18):
What if the evidence typicallycited to support BAP isn't
actually evidence forsubclinical traits at all?
What if it's evidence thatautism is more common than we
currently recognize?
Think about that.
What if many individuals labeledas having subclinical autistic
(17:39):
traits are actually autistic,but undiagnosed?
What if BAP research has beendocumenting the presence of
additional autistic people andfamilies already affected by
autism, rather than documentinggenetic liability for
subclinical traits.
This alternative explanationwould account for so much.
(18:02):
The familial clustering oftraits, the high heritability
estimates, the neuroimagingdifferences, even the wildly
variable prevalence estimates.
Different studies might becapturing different proportions
of undiagnosed autisticindividuals depending on their
methodology and population.
(18:25):
This explanation becomes evenmore compelling when you
consider the historical contextof autism diagnosis.
We know that autism has beensystematically underdiagnosed in
women and people of color andindividuals without intellectual
disabilities, and in people whodeveloped effective masking
(18:46):
strategies.
Many autistic adults describerecognizing their own autism
only after their children werediagnosed.
Rather than representingsubclinical traits, these
patterns might simply reflectthe intergenerational
transmission of autism infamilies where it has been
(19:06):
historically overlooked.
The possibility that BAP traitsrepresent undiagnosed autism
rather than some clinicalphenotypes isn't just
academically interesting.
It's personally and politicallysignificant.
It shifts the narrative fromgenetic liability for pathology
(19:29):
to unrecognized neurodiversity.
So what does this mean forscience?
Where does this investigationleave us?
I think it reveals somethingprofound about how scientific
knowledge gets constructed andwhose voices get heard in that
process.
(19:50):
The BAP story isn't just aboutone research concept gone awry.
It's a case study in whathappens when research proceeds
without meaningful input fromthe communities being studied.
It's about the differencebetween studying people and
studying with people.
For decades, researchers havebeen measuring, categorizing and
(20:13):
theorizing about traits inautistic families without
centering the perspective ofautistic people themselves.
When autistic researchersfinally got asked what they
thought about the fundamentalconcept underlying this
research, their response wasessentially, this doesn't exist
(20:34):
the way you think it does.
The methodological implicationsare staggering.
If the critique is correct, thenhundreds of studies, millions of
dollars in research funding.
An entire theoretical frameworksmay be based on a conceptual
error, not fraud.
(20:56):
Not bad science in thetraditional sense, but a
fundamental misunderstanding ofwhat was being measured.
This raises uncomfortablequestions about research quality
control.
How did a concept with suchfundamental definitional
problems become so widelyaccepted?
(21:16):
Why wasn't community inputsought earlier?
What other research conceptsmight benefit from similar
scrutiny?
But beyond the academicimplications?
This has real-world consequencesfor autistic people and their
families.
BAP research has influencedgenetic counseling practices,
(21:39):
shaped how families understandthemselves, and contributed to
conversations about autismprevention.
If the neurodiversity critiqueis correct, if these so-called
subclinical traits actuallyrepresent normal human variation
or undiagnosed autism, thenframing them as genetic
(22:01):
liability becomes not justscientifically questionable, but
ethically problematic.
The language of geneticliability implies that these
characteristics are undesirable.
That they represent risks to bemanaged rather than differences
to be understood andaccommodated.
(22:24):
But here's what gives me hopeand why I wanted to share this
investigation with you.
The same research that has beenused to support BAP actually
points towards something muchmore interesting and affirming.
What if autistic traits aren'tdeficits or liabilities at all?
(22:45):
But simply variations in humanneurological functioning.
What if the genetic findingsdon't document pathology, but
rather the heritability ofneurodivergent ways of being?
What if instead of trying toprevent or predict autism, we
focused on understanding andsupporting the autistic people
(23:06):
who are already here.
Imagine autism research thatstarts with autistic experiences
instead of trying to explainthem away, or research that
asks, How can we create moreaccessible environments instead
of How can we make autisticpeople more normal?
Or research that views autistictraits as potentially valuable
(23:29):
contributions to human diversityrather than problems to be
solved.
If you take one thing from thisinvestigation, let it be this.
The next time you encounterautism research or really any
research about marginalizedcommunities, ask yourself some
questions.
(23:49):
Who was included in designingthis study?
Who was included in interpretingthe results, whose voices were
centered and whose voices weremarginalized?
Demand that research include thecommunities it studies as
partners, not just subjects.
Support researchers who aremembers of the communities they
(24:11):
study.
Question, research thatpathologizes difference without
considering alternativeexplanations.
And for my autistic listenersspecifically, trust your
instincts about research thatdoesn't ring true to your
experience.
Your lived experience matters.
(24:31):
Your perspectives are valuable.
The fact that you've beenexcluded from much of the
research about you doesn't makethat research more objective.
It makes it incomplete.
I started this investigationthinking I was examining a
scientific concept.
I thought I was gonna learnsomething new.
(24:54):
I ended up discovering somethingmuch more important.
I did discover something newthat the power of community
knowledge and the courage ofresearchers willing to question
established narratives can makea world of difference.
The broad autism phenotype mightindeed be a phantom, but the
(25:14):
autistic community's wisdom isvery real and it's time the
research world startedlistening.
You've been listening to NeuroRebel.
(25:34):
And I'm your host, Anita.
If this episode challenged yourthinking, validated your
experiences, or simply gave yousomething to ponder, please
share it with someone who needsto hear it.
Our next episode will explorehow these same concepts are
being exported to Latin Americancontexts often inappropriately.
(25:57):
We'll examine scientific,colonialism, cultural adaptation
of research, and why globalneurodiversity advocacy must be
culturally responsive.
You can find show notes,transcripts, and additional
resources@neurorebelpodcast.com.
Follow us on social media.
We're@neurorebelpodcast forupdates and continued
(26:20):
conversation.
And if this work adds value toyour life, consider supporting
it financially through the linksin our show notes.
Remember, we don't need to befixed or cured or prevented.
We need to be understood,supported, and valued for who we
are until the next time, thankyou so much for listening.
(26:43):
Keep questioning, keepchallenging, and keep being
beautifully unapologetically,neurodivergent.
This has been neuro rebel.
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