December 21, 2025 • 42 mins
Hi! We're taking a quick break for the holidays and wanted to let you know about a new show we love. Alive with Steve Burns.
There are a thousand podcasts you can listen to. This one listens back. And this week, we’re here to tell you about it.
Alive with Steve Burns continues the conversation you began all those years ago. Back then it was letters and numbers and graham crackers. Now it’s death, sex, taxes, and all the big, messy questions of being alive. Why does money stress us out? Is the American dream dead? What’s the future of truth?
Each week, a new guest drops by Steve’s window for a genuine and respectful dialogue between two people just trying to figure it out, together. Funny, tender, and just a little weird, this show invites you to sit down and think with Steve once again and wonder… what it really means to be alive.
You’re about to hear a clip from the first episode, where Steve sits down with Dr. Desiree Jones, Assistant Professor of Psychology and director of the SHINE Lab (Stigma, Human Interaction, and Neurodivergent Experiences) at the University of Maryland to discuss the difference between “normal” and “not normal”. To hear more of Alive with Steve Burns, head to: https://lemonada.lnk.to/AlivewithSteveBurnsfd
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Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:11):
Hey there, you are great to see you, come on in.
Welcome to Alive. So, okay, would you consider yourself to
be a normal person? Hmmm mm hmmm mm hmm, I'm
(00:44):
making tea? Do you want? You want tea?
Speaker 2 (00:46):
Okay, I'd say most of the time, I consider myself
to be a relatively normal person.
Speaker 1 (00:59):
But then I remember that I'm a fifty one year
old eccentric bachelor who has elected to live entirely alone,
off grid in the woods, halfway up a mountain like
some bald woodland cryptid. And I think maybe not so much.
(01:19):
I ask because you know, there's a lot of talk
about neurodivergence autism especially, and you know the way that
people who think or communicate differently relate to the rest
of us. Here's your tea. And I know that Blues
(01:44):
Clues had a really profound impact on the autistic community,
and I've always wanted to know why. In anyway, everyone's different, right, unique,
So it's not always so easy to tell who's neurodivergent anyway,
And what does the term even mean, you know? And
(02:11):
also who gets to decide what's normal? What do you think?
Huh huh? Okay, let's go Okay, all right, So. Desiree
(02:42):
Jones is an Associate professor of psychology and director of
the SHINE Lab that stands for Stigma, Human Interaction and
Neurodivergent Experiences at the University of Maryland. Before that, she
was a President's Postdoctoral Fellow, which sounds incredibly official to me.
She started at Wellesley studying both neuroscience and psychology. Apparently
(03:05):
one brain degree wasn't enough. Then she went on to
the University of Texas at Dallas for a master's and
applied cognition in neuroscience, followed by a PhD in psychological sciences.
Some people collect funko pops, desire collects diplomas. Apparently her
research is about autism, stigma, and intersectionality, basically all the
(03:26):
ways in which society decides who's normal and who isn't.
And in twenty twenty three she landed on the Forbes
thirty Under thirty Science list, which is to say, she's
one of those extraordinarily accomplished people who is also simultaneously
very very young and therefore totally intimidating to me. She's here, Hey,
(03:51):
how you doing today, Hi, Steve.
Speaker 3 (03:53):
I'm really great. I'm so glad that I could catch you.
Speaker 1 (03:56):
I am so excited that you're here. You're so kind
to join us. Do I call you Desire or do
I call you DESI?
Speaker 4 (04:03):
Yeah, I go buy DESI usually especially with friends. And yeah,
hopefully we can be friends.
Speaker 1 (04:08):
Are we friends? We're friends?
Speaker 3 (04:09):
I hope.
Speaker 4 (04:09):
So I hope I can tell everyone I'm friends with you, Steve.
I think, well, yeah, that would earn me a lot
of credibility.
Speaker 1 (04:15):
Listen, you came over to my window. You're willing to
talk to me about stuff I don't know anything about,
and you're super cool and super nice and we're totally friends,
and all right, thank you for being here. Thank you
so full disclosure. This is not a topic I know
a whole lot about, but it is something I would
like to know a whole lot about, in part because
(04:38):
of my former job. And we can get into that,
but before we get too far, I want to talk
about this term neurodivergence, because it's something I hear all
the time. We all hear all the time. I hear
a lot of people say it, but I feel like
people mean a lot of different things when I'm not
(04:58):
sure everyone's talking about the same thing. So what do
you think it is.
Speaker 4 (05:04):
Yeah, so I think you can't really talk about neurodivergence,
which without talking about this broader topic of neurodiversity, right,
so starting at the basic building blocks for that. You know,
this is something I talk a lot about with students
and things like that because you know, a lot of
people are interested in learning about this.
Speaker 3 (05:20):
But basically, you know, if you think.
Speaker 4 (05:23):
About the world, I think one of the things that
makes it so beautiful is that we're all different from
each other. You know, we have people different races, different backgrounds,
different heights, ages, things like that. Neurodiversity applies that idea
to our brains. It's kind of a framework looking at
you know, different types of brains. So you have neurotypical people.
These are people whose brains function in what's seen is
(05:45):
like a typical way. Society was kind of built around
their needs. You know, the way that they process the
world and respond to things and behave is seen as
like typical behaviors within like a culture or the world
around us. People whose brains process things a little diff
diferently might behave a little differently from those norms. They're
called neurodivergent. So this is a pretty broad term broad people.
(06:08):
I think, you know, like you were saying, a lot
of people can define it differently, So sometimes you might
see it used to define really only like developmental conditions
like autism and ADHD especially you know, I'm an autism researcher.
I have ADHD, so those are kind of in my framework.
But you know, if you think about it, people with
things like mental health conditions, mental illness that also affects
(06:30):
how you experience the world, how you process things. You know,
people with anxiety or depression or schizophrenia, and they're often
judged for their behaviors and in need of like extra
supports and things like that. And then you can even
go as far as talking about people with acquired things
like people who have had strokes, things like that. You know,
that affects the brain, that affects how you experience the
(06:53):
world around you and respond. So I think that I'm
not trying to gate keep you know, neurodiversity, neurodivergence. I
think that you know, if a person is experiencing these difficulties,
they're kind of common across these different types of conditions.
Then like, I think it's fine to label yourself as neurodivergent.
Speaker 1 (07:12):
Right on. I like what you're saying. What I'm what
I'm hearing you say, at least certainly in the beginning
of that is it's less about differants and more about
the same sort of diversity that is part of human diversity, right,
Like in a way it when you think of neurodiversity,
(07:34):
it's like biodiversity, is this is a function of the
human condition. There is diversity, right, So of course there
is neurodiversity, right.
Speaker 4 (07:42):
I just want to say one thing, you know, I
think that a lot of times people will take that
diversity thing and kind of run with it and say, oh,
it's not a disability, you know, then everyone's a little
autistic or things like that. But it also can be
very disabling because of the social structures that we have
in our world.
Speaker 1 (07:58):
What are some ways in which it might actually be
a strength, like in school or in work, or in
a relationship or something.
Speaker 4 (08:04):
One of the big things is because you can think
differently because you're neurodivergent.
Speaker 3 (08:09):
You can be really creative oftentimes.
Speaker 4 (08:11):
So a lot of neurodivergent people find that they really
excel at creative things like the arts or being organized
and following a routine and they can be really good
at things like programming because of.
Speaker 1 (08:21):
That, is there sort of a dynamic of trade off
involved in that. You know, if there's you know, a
hyper focus and a hyper utility in one area, does
that ever mean there's a deficit somewhere else.
Speaker 4 (08:33):
I'd say that one of the biggest problems with hyper
focus is that it can you know, it doesn't necessarily
create deficits, but it can create problems in social relationships.
If you're you know, really excited and enthusiastic about something,
you're really into it, you want to talk about it
a lot to someone. I'm someone who's a big talker,
but they're just not interested. You know, they're like very bored,
(08:55):
and you know they're like, oh my gosh, this person
is still talking about this. You know, that can make
get difficult to form relationships, and that's often a response
that neurodivergent people often receive. Another thing is if you're
you know, two into something, it can mean you know,
you have an aspect of perfectionism. So maybe you're you know,
really detail oriented. You're like, I want to find all
(09:16):
the research about this area for this project and get
it perfect but then it's hard to meet deadlines and
things like that.
Speaker 1 (09:22):
Oh yeah, I can relate to that. I mean, I
live off gride in a house halfway up a mountain.
You know. Uh, you know I I am. I am
an introverts introvert, you know, and it does feel at times.
It's not that I don't prefer to be around people,
(09:43):
it's that I cannot. You know that there are times
where we're functioning around people would be not really an
option almost you know, it's hard to describe, but I
feel like, you know what I'm talking about.
Speaker 4 (09:58):
I do, and you know, I think this is really
common for neurodivergent people. So it's something you know, they
call it autistic burnout for autism, but a lot of
it's because I don't know, maybe you can relate to this,
or maybe people at home can relate to this. It's like,
when you're interacting with people, you can't always be fully yourself, right.
Maybe you can think of a situation where you've had
(10:20):
to kind of perform for people, like you're meeting a
partner's parents for the first time, or you're at an interview,
or you're guest on a podcast, so you know, you
feel like you have to be your best version of yourself.
Neurodivergent people feel like that pretty much, like all the
time and all of their interactions.
Speaker 3 (10:37):
They're taught to like hide who they are. It's called masking.
Speaker 1 (10:40):
Yeah, tell me about masking.
Speaker 3 (10:42):
Yeah.
Speaker 4 (10:42):
So it's kind of like a sometimes conscious, sometimes just
automatic response to a lot of the stigma and discrimination
and social challenges that neurodivergent, especially autistic people face.
Speaker 3 (10:54):
So they might you know.
Speaker 4 (10:55):
Make an effort to se debstrate, change the tone and
volume of their voice. They might have a script that
they follow in conversations to make it.
Speaker 3 (11:02):
More comfortable for them.
Speaker 4 (11:04):
You know, they're basically altering their social kind of abilities
and social performance to better fit in and gain acceptance.
Like I said, it can be completely non conscious, though,
but it can lead to a lot of challenges, right.
It's exhausting, you know, not being able to be yourself
around people.
Speaker 1 (11:22):
Oh my goodness, I mean neurotypical neurodivergent. I think everyone
can relate to the weight of that feeling, you know.
Speaker 3 (11:32):
Yeah, exactly Why.
Speaker 1 (11:34):
Does it seem like diagnoses are rising so fast? Is
it because that it is more common or is it
because there's more focus on it.
Speaker 4 (11:43):
We do see that, you know, diagnoses are rising in
large part. You know this is really because we've gotten
much better at diagnosing people. So I think we've gotten
better at detecting autism earlier, so they can do it
like two to three years of age pretty reliably now,
and we're also going to better at diagnosing it in
populations that you know, don't fit the kind of standard
(12:05):
stereotypical model. So like what like it was frequently white males,
like little boys, there used to be a four to
one gender ratio, and then autistic people of color.
Speaker 3 (12:16):
A lot of people of color have.
Speaker 4 (12:18):
Been misdiagnosed as having like behavioral conditions first and then
they later go on to get an autism diagnosis. They've
also made some changes around the diagnosis of autism, so
there used to be separate conditions. Like maybe you've heard
of Asperger syndrome that's now under the umbrella of autism,
but until twenty thirteen, it was a separate diagnosis.
Speaker 1 (12:43):
Tell me more about why girls in particular and people
of color so often get missed in their diagnosis until
later in life. What's that about.
Speaker 4 (12:55):
Yeah, so a lot of research has shown that can
really a lot of can be attributed to stigma, just
both kind of stereotypes about what autism looks like, and
then also some bias and providers.
Speaker 1 (13:08):
What biases are you talking about?
Speaker 4 (13:09):
Specifically, there's a bias about like black families, So they
were making judgments on family structures, like maybe both parents
are working and you know, the kids being taken care
of in daycare or things like that, or they're not
in like a traditional preschool things like that, or you know,
the provider kind of making judgments about behaviors that might
(13:30):
be typical for black children versus white children.
Speaker 3 (13:34):
There was another study where they kind of, you know,
it wasn't.
Speaker 4 (13:36):
Actual kids, but they gave a description of like behaviors
that were atypical, and they asked students to like identify
a diagnosis. When they labeled the kid is white, the
students were more likely to say that kid was autistic
versus if the student or if the kid was labeled
as black.
Speaker 3 (13:51):
Students usually attributed it to.
Speaker 4 (13:53):
Like it's called oppositional defiant disorder or like behavioral conditions.
Speaker 1 (13:58):
What is oppositional defiant disorder?
Speaker 4 (14:02):
Yeah, so that's a disorder that's diagnosed often in childhood
and it's really you know, kind of having these defiant behaviors.
So it's you know, kind of doing not what you're told,
or these externalizing, acting out types of behaviors. So it's
like kids who might be very resistant in nature, or
kids who might have hitting and behaviors like that.
Speaker 1 (14:23):
So I want to be clear. So this this paper
determined or found that later in life, someone who might
have been dismissed as having you know, oppositional defiance disorder
actually met the criteria for autism.
Speaker 4 (14:37):
Yes, there have been several studies that have shown that,
you know, black children are more likely to have a
more diagnoses before reaching the autism diagnosis. That's kind of
their final diagnosis, more time to reach an autism diagnosis,
so they're diagnosed at a later age, and then you know,
more misdiagnoses at first, so things like ADHD or behavioral difficulties.
(14:58):
That does sound like bias, Yeah, exactly, So that's kind
of why we talk about that. For girls, it can
be a little more complicated. And you know, again this
can also relate to people of color and stuff. We
think that girls might mask more so you know, maybe
they're able to fly under the radar. Yeah, so that
can be a thing. Maybe you know, doctors aren't as
(15:19):
good at recognizing when someone's masking. That's often also the
case with like black autistic people. You know, their top
two mask and conceal their behaviors to protect themselves.
Speaker 3 (15:29):
So that can make it harder.
Speaker 4 (15:30):
You know, on top of these biases, you know, just
some of these differences in what a behavior might look
like in these assessments.
Speaker 1 (15:38):
I wonder if young girls are sort of asked to
mask anyway, so they might be they might be good maskers.
Speaker 4 (15:47):
Yeah, And you know, when we look at autistic girls,
we do see, like, first of all, girls are kind
of socialized to play with toys like dolls and stuff
like that, and those are some of the tools we
use in the like autism diagnostic assessment that seems like
gold standard, it's called the ADOS. So you know, maybe
they're more likely to be interested in those social toys
(16:07):
or another study showed that, you know, autistic girls often
have interests that are like more typical, but they're just
really intense in nature, whereas autistic boys might be more
interested in kind of more obscure types of things interesting.
Speaker 1 (16:24):
Do do Queer and autistic identities overlap in similar ways,
you know that that are meaningful for belonging, support and
everything else.
Speaker 4 (16:36):
Yeah, so this unfortunately is an area that's like very
much pretty new in research. There wasn't a lot of
focus on LGBTQ plus autistic people. You know, they were
kind of just like I said, autism research was very
like homogenous for a while. So I think one thing
that's really interesting that's come out of it is that
(16:57):
a lot more autistic people are transgender or non binary
compared to the general population. And yeah, so even you know,
within people who I've worked with in my study that
you know, I don't aim to recruit for that, but
in my dissutation, like I want to say, like a
close to a third of people identified as non binary.
And there's a theory that maybe autistic people you know,
(17:19):
don't perceive these gender norms in the same way because
you know, of their differences in thinking, you know, it
might be something like that. You know, we haven't really
I think the research is just kind of getting started
in it and trying to figure this out. But yeah,
a lot of autistic people do identify as trends or
non binary.
Speaker 1 (17:37):
That is I would love to read about that that
is really interesting research. So they're thinking perhaps they don't
perceive gender in the same way and then also don't
apply that perception to themselves.
Speaker 4 (17:53):
I think we find a similar thing for you, like
being a sexual or a romantic. That's also higher prevalence
foreign eurodivergent people, so you know, maybe they also you know,
it could be a brain thing. It could be kind
of a combination of like brain and like socialization. There's
not enough research really to say what the cause of
this is. We're just you know, seeing this consistent pattern
(18:14):
of you know, different ways of thinking about things like
gender and sexuality and autistic people.
Speaker 1 (18:22):
You said asexual and a romantic. What is the distinction
between those two.
Speaker 4 (18:26):
So when we think about a sexuality, that's really referring
to sexual desires, so you know, it's not about sexual behaviors.
Some asexual people aren't sexually attracted to people, you know,
they they don't form those sexual attractions. Some people call
themselves like demisexual, so that means that they only form
you know, these again sexual attractions to certain people, like
(18:48):
once they've known them a little better. In terms of
a romantic that's again that kind of like attachment behavior.
So when you're in a romantic relationship. I think the
big way to distinguish this is, you know, you can
of like casual hookups that would be like sexuality, sexual behaviors,
sexual attraction, whereas like a romantic relationship that would be
(19:08):
you know, that romanticism. You know, you can have a relationship,
a very successful relationship with someone that's romantic where you
don't engage in sex or sexual behaviors for whatever reason,
just like you can have sex without that romantic attachment.
Speaker 1 (19:23):
Yes, I was about to ask because that was possible
asking for a friend, of course, But what is what
is the double empathy problem? This is something that I
hear a lot about in this conversation.
Speaker 3 (19:36):
When we look at research.
Speaker 4 (19:37):
You know, there are a lot of studies looking at
interactions between autistic and non autistic people and comparing them
to interactions between you know, just two autistic people or
two non autistic people.
Speaker 3 (19:48):
And interestingly, a lot.
Speaker 4 (19:50):
Of this research shows that, you know, when you have
two autistic people, they don't have a lot of these.
Speaker 3 (19:54):
Difficulties in their interactions.
Speaker 4 (19:56):
They can understand each other better, you know, understand what
they're saying, what they're expressing, and they get along a
little better, and these interactions, you know, they rate them
pretty positively.
Speaker 3 (20:04):
If autistic people just had.
Speaker 4 (20:06):
Broad social deficits, you wouldn't expect that, right, You'd expect
two autistic people to you know, have a really poor interaction,
and that's not what we're seeing in research. Many times,
these two autistic people get along, you know, just as
well as two non autistic people and can communicate just
as effectively. So the double empathy problem is really saying
that it's not just autistic people having trouble understanding and
(20:29):
empathizing with non autistic people.
Speaker 3 (20:31):
It's a two sided thing.
Speaker 4 (20:33):
You know, non autistic people also have trouble you know,
understanding and interpreting autistic communication.
Speaker 1 (20:39):
Right, So how can we do that? How can we
better interpret and understand the autistic community.
Speaker 4 (20:46):
I think the biggest thing is just getting to know
and kind of understand autistic people around you. So we
have some research and we've looked at how people kind
of perceive autistic people, like the.
Speaker 3 (20:59):
Stereotypes I have.
Speaker 4 (21:00):
We call it, like first impressions would show a ten
second video of autistic people. You know, sometimes we don't
even say that they're autistic. We ask people, what do
you think of this person, like, would you hang out
with them? Those types of things, And we find that
people who have more knowledge about autism and also have
you know, more firsthand experience with autistic people, both of
those things are associated with writing autistic people better. So
(21:23):
I think just you know, being able to you know,
whether you have autistic friends or you know, you follow
people who are autistic online, you can learn to understand
them just like you can, you know, learn to understand
how your friend from a different culture might express themselves differently.
So I think that that's social contact, and you know,
interacting with and learning from and listening to autistic people
(21:43):
is a really important component of that.
Speaker 1 (21:45):
Yeah, that's what I found in my lived experience. And
I have some autistic friends, you know, I think we
all do, and that's what I found. It's just like, oh,
it's just a slightly different code. I get it, you know. Yeah,
and listening as been big a big part of that. Yeah,
So why do you think people still assume that autism
(22:06):
means lack of empathy?
Speaker 4 (22:08):
One thing that I found was really common was that
people often learned about autism from you know, like TV
shows and things like that. And I think If you
think about autistic characters that are represented, it's often like
a very small range of different people. You know, there's
much more diversity and actual autistic people, so you often
see this kind of like Asperger's phenotype, where it's.
Speaker 3 (22:31):
Like a white guy who's like.
Speaker 4 (22:33):
Really socially awkward but like really smart and talented. So
you know, common ones are like Sheldon from The Big
Bang Theory, or the guy and the Good Doctor, or
you can see that savant type of thing where people
really struggle with the social connection, like rain Man, which
is a really it's been actually really harmful stereotype for
many autistic people to overcome.
Speaker 3 (22:54):
So I think that's one of the problems.
Speaker 4 (22:57):
You know, autistic people have often been portrayed as like
aloof and cold, when in reality, many autistic people avoid
interactions because they've faced so much discrimination and bullying and
things like that and have had so many negative experiences,
so they might withdraw a little bit be hesitant to
form some of these interactions, but it doesn't mean they
don't want friends, right in that.
Speaker 1 (23:19):
And I'm sure that just you know, creates more masking
and more anxiety, and it just creates that cycle back
and forth because of the double empathy problem going over
around and around. Do you think the stigma is shrinking
or is it just kind of morphing into subtler forms.
Speaker 4 (23:36):
I think that especially recently, we've had a lot of
efforts to increase autism awareness and that's been really effective.
So a lot of people know what autism is at
least on a very basic level, but we certainly have
a ways to go. There have been especially many very
recent dialogues about autism that are very dangerous and harmful,
(23:56):
you know, saying things like that autistic people can never
do like all of these things, you know, like they
can never play baseball, they can never have a meaningful life.
Speaker 3 (24:05):
Ah.
Speaker 4 (24:06):
That's very stigmatizing and it's just like a vast over generalization.
And it's also dangerous because it kind of says that
a person's value is tied to their abilities, which I
think is a really harmful notion. So it's something we
see a lot too. But I mean the term for
it is ableism, you know, discrimination based on ability, and
that's still really common. We see it in the workplace,
(24:29):
we see it in romantic relationships, friendships. One of the
biggest things we find consistently in our relationship is that
non autistic people are really reluctant to form relationships with
autistic people. You know, they have a much reduced interest
in that compared to you know, friendships with people.
Speaker 3 (24:44):
With other conditions.
Speaker 1 (24:46):
Why do you think that is?
Speaker 4 (24:47):
I think part of it, you know, is, you know,
again these kind of misinterpretations of autistic communication. Oftentimes people
might interpret an autistic person as being disinterested or awkward
or things like that, and they're less interested in.
Speaker 3 (25:01):
Forming friends with them because of that.
Speaker 4 (25:03):
One interesting thing is that we only really see that
for non autistic people. If I show videos of autistic
people to other autistic people, they'll still rate them as
awkward things like that, but they don't have that reduced
social interest, which suggests that you know, neurodivergent or especially
autistic people might not use that, might not put as
much weight on that when they're forming friends. It's like
(25:24):
I can be friends with someone who's awkward or things
like that. You know, that's not a barrier for us,
whereas it might be a big barrier for a lot
of you know, neurotypical people.
Speaker 1 (25:34):
Yeah, a lot of it is about you know, seeing
past your assumption of the cue that you're reading.
Speaker 3 (25:38):
You know.
Speaker 1 (25:39):
I remember I was dating someone who had ADHD, and
for a while, I was like, this person is just
being very rude, you know, and I was misinterpreting a
lot of stuff and I was like, huh. And then
and then I figured out what was going on, and
we talked and we communicated and it was cool, you know,
(25:59):
But but that was on me, you know, I was
I was making an assumption there.
Speaker 2 (26:05):
You know.
Speaker 3 (26:05):
That's a fantastic way of putting it.
Speaker 4 (26:07):
You know, I think a lot of this research has
come out showing you know, for my dissertation, I interviewed
autistic people about their social experiences, and one thing that
really came out of it was that people were very
frequently misinterpreted. So autistic women said that people often said
that they had like resting bitch face and thought that
they were really angry and things like that all the time.
You know, Black autistic people said that they felt like
(26:29):
they had to be really conscious of their behaviors so
they weren't interpreted as aggressive or you know, lazier a
lot of these stereotypes. And then just in addition to that,
you know, a lot of autistic people just felt like
people even who were close to them, didn't understand them,
you know, their motives, their intentions.
Speaker 1 (26:51):
One thing you said that really struck me. It was
this masking around policing, you know, because you know, you
don't want your behavior to be misinterpreted. You don't want
you don't want to have a misinterpreted neurodivergent behavior compounding
a bias in that moment. You know. That does sound
(27:14):
particularly fraud So a lot of this sounds like it's on,
it's on. Or the double empathy problem, right, which I
think is really fascinating, means that both sides have to try,
you know, and uh, and how can we accommodate and
(27:36):
even advocate without alienating.
Speaker 4 (27:39):
Yeah, so I think that changes are needed, you know,
both on an individual level. You know, I've talked a
lot about increasing our understanding autistic ways of communication, reducing
our stigma towards autism, so being more accepting and accommodating,
But I also think we need some structural changes to
help autistic people.
Speaker 3 (27:56):
Right.
Speaker 4 (27:56):
So one thing that's really helpful is like increased flexibility,
so you know, being being more flexible with your friends
if you know, maybe they're not feeling a social interaction.
Maybe they're not feeling like going out, maybe they're autistic
or neurodivergent, they're just really burnt out. They'd rather stay
in or just like having some time to themselves.
Speaker 3 (28:15):
You know.
Speaker 4 (28:15):
I think oftentimes we get labeled as flaky for canceling,
and you know, it can be tough, but you know,
having that flexibility. I also think just communicating your expectations socially,
so you know, knowing, you know, kind of laying out
being direct about what you're expecting of someone. Like we
had like a seminar here and we were kind of
talking about like norms social norms, and we're writing them out,
(28:39):
and we were saying, like how many of these are
actually necessary in a social interaction, And we realized like
very few of them were actually necessary, but they were
often things that are used to kind of stigmatize.
Speaker 3 (28:49):
Or exclude neurodivergent people.
Speaker 4 (28:51):
Like eye contact is a good one, Like, you know,
it can be helpful for non autistic neurotypical people to
like read emotions from someone's eyes, but is that really necessary.
You know, listen to the words they're saying in any cases,
that will tell.
Speaker 3 (29:05):
You exactly what you need to know. About how they're feeling.
Speaker 1 (29:07):
Ask them what would you say to a parent who
who's wondering how to prepare their child, their autistic child
to enter a world that often confuses diversity for disorder.
Speaker 4 (29:24):
I think that this is a really tough thing for
a lot of parents, especially because you know, autism is
a spectrum, and you know, some people's kids can have
really high support needs where you know, they might require
around the round the clock type of help with you know,
daily living and different types of skills, a lot more support,
whereas you know, some people's kids may achieve independence and
(29:47):
need less of that support. So things can look very
different for different parents of different autistic people, just like
they can look, you know, different for parents of neurotypical people.
Right that, With that in mind, I think they're like
three things that are really important for helping to prepare
your autistic child for the world, and that's acceptance, advocacy,
(30:08):
and love. So what I mean by acceptance is, you know,
accepting your child for who they are, especially who they
are now, not.
Speaker 3 (30:15):
Who you hope they'll be in the future.
Speaker 4 (30:17):
You know, I think parents can pretty commonly expect things
of their kids or hope for things of their kids.
But you know, I think just appreciating who they are.
Speaker 3 (30:25):
Now in the moment.
Speaker 4 (30:26):
You know, they have value their your kids, so just
you know, accepting them for who they are now, kind
of regardless again of that ability level or you know,
challenges they might face and things like that. Advocacy is
also really important. So many parents have to advocate for
their kid kind of throughout their life in school, you know,
getting them the supports they need. There's something called an
(30:48):
IEP in school that's really helpful for many disabled kids. Also,
things like you know, pushing your doctor to you know
get a certain support like therapy or something, or even
just getting that initial autism diagnosis if your kid has
the ability, teaching them to advocate for themselves, right, you
know that kind of thing. And then finally, I think
(31:08):
love is pretty self explanatory, right, But what I mean
by that is just like giving your kid a space
to know that they belong, they're valued, they're accepted. So
as an ero divergent kid, like this was really helpful
for me. I was a weird kid, Like I got
obsessed with Matt Damon.
Speaker 3 (31:25):
For like three years. I'm someways doing He's a.
Speaker 1 (31:29):
Great accurate and it's like he was a nice guy
from Boston. He wrote Goodwill Hunting when he was younger
than you.
Speaker 4 (31:38):
You don't have to tell me, like I was obsessed
with him to the point that I was like actively
bullied for this, Like I was a weird kid. I'd say, yeah,
but my parents were just like whatever. And the point
is like I was weird as a kid, and not
in like a really cute way, like oftentimes in a
way that got me picked on or people thought I
was like genuinely weird, but I never felt that way
with my parents.
Speaker 3 (31:59):
I'm sorry, and it's right, especially with other kids, because I'll.
Speaker 1 (32:02):
Tell you just being myself here, Yeah, being bullied, I
always say, you know, being bullied when I was young.
It's difficult for me to think of anything that was
more formative in my life, and it still shapes my
perceptions to this day. You know, I am still aware
of the way in which I was fired in that
(32:23):
particular crucible. You know, it's still it's had a profound impact,
I think on anyone who's experienced it, you know, And
you were really Matt Damon, I wanted to be a mime.
Speaker 4 (32:38):
Oh wow, yeah, you're you're a performer. You know, you
became a performer. So I think it worked out in.
Speaker 1 (32:45):
The end, you know, Yeah, I guess I was asking
for it in a way.
Speaker 4 (32:49):
I was like the kid who corrected the teacher and like,
you know, that doesn't make you a lot of friends,
or like reminding the teacher like you forgot to give
us homework like that, I'll.
Speaker 1 (32:59):
Get your bullied. DESI that'll get you bullied. Yeah. Yeah, wow,
that's that's strong coffee. Yeah, talk to me a little
about neurodivergence and emergent technologies. Now, we're all relating through
screens all the time, right You and I are relating
through that right now. And how do all these screens
(33:22):
factor in? You know, is is it helping? Is it helpful?
Is it hurtful? Like what's up?
Speaker 4 (33:28):
Yeah, So this whole issue of social media and technology
can be really interesting for autistic people. So, you know,
in my dissertation, like I said, I interviewed autistic people
about their social experiences and one thing that came out,
especially for black autistic people and autistic women, was the.
Speaker 3 (33:45):
Internet was like really powerful for them.
Speaker 4 (33:48):
So that's where most of their friends were online, you know,
people on like Twitter, or you know, I had people
who were like I found people who are interested in
k POMP like me. It's like I've been a really
good tool for a lot of people to you know,
find people who are similar to them, maybe other neurodivergent people,
other people with overlapping interests, and there's a lot less
social pressure than like a face to face interaction. So
(34:09):
we did a study here at UMD with kids and
many of the kids said like, oh, I met like
friends online through like this game I played, and you know,
I don't really have friends in person.
Speaker 3 (34:19):
That said, it can also open up some trouble for
neurodivergent people.
Speaker 4 (34:24):
So cyber bullying is something that can be really common
for neurodivergent people. I think, like especially kids who are
in school. You know, they can have videos spread around
them making fun of them. When I was in high school,
there was a Facebook group that was called like this
kid has Asperger syndrome, and like a bunch of people
were joining it, and that's.
Speaker 3 (34:41):
Really messed up, like why would you do that?
Speaker 4 (34:45):
But you know, that is a really common thing. Many
neurodivergent people get bullied. I had someone who was in
my dissertation who said, like they used four chan a lot,
and like obviously they get bullied all the time on there.
There's a very like aggressiven and on that website. So
I do think it can be both. I think it
also is tough because for many autistic people, those relationships
(35:08):
that they have online, they'd like them to expand into
something more. They'd like to have that face to face
you know, interaction and connection, but they can't, you know,
for whatever reasons. It can sometimes be a barrier and
be a little harder. You know, they still have these
unmet social needs. So I think it can be both
a benefit and a challenge. I'll also just add a
couple more like quick points.
Speaker 1 (35:27):
Yeah please.
Speaker 4 (35:28):
Two benefits outside of relationships for these kind of online interactions.
Speaker 3 (35:32):
Are a you know, you get more flexibility.
Speaker 4 (35:35):
You could go to school online or you know, work virtually.
It does help for like accommodations for people you know,
maybe you just like can't go in one day or you.
Speaker 3 (35:44):
Have a communication barrier.
Speaker 4 (35:46):
And then the other thing is like text to speech
programs and assistive communications. So many autistic people don't speak
with words, but they're able to communicate through like an
iPad or something like that. So I think technology has
been like both really great, but it can also you know,
present some dangers.
Speaker 1 (36:02):
What about the future, where do you think this is going?
Do you have hope? You seem like a very hopeful person.
It seems like we're gonna we're going to learn to
accommodate a little bit more. What do you what do
you think?
Speaker 4 (36:12):
I like to think that, you know, the universe is
shifting towards you know, this balance, this acceptance for you know, everyone,
We're seeing over time we are becoming more accepting of differences.
I think that with the way that the world is now,
it's so global, you know, you have to be accommodating
of people who are different from you and accepting the things,
whether it's people from different cultures, different backgrounds, or you know,
(36:35):
people with different brains. So I'm really hopeful towards that,
you know, I already just I've been in autism research
for I guess like almost ten years now, and I've
already seen a big change, you know, not just within
you know, the field in general, but within my own
work and my own understanding, my own interactions with autistic
collaborators and students and you know, even participants who I'm
(36:59):
talking to, and every person who I talk to, I
walk away from that conversation having learned something. So I
think that's really cool. And I really just believe in
the best in people. So I really do think that
it's going to get better. You know, I've seen it
getting better for a lot of autistic people I know.
And yeah, I know that a lot of them, you know,
(37:21):
they say it's not great now, but like they also
have hope for the future. And you know, I hope
that we can kind of shift our understanding of autism
to be more accepting because regardless of a person's ability level,
things like that, if we reduce stigma, we can make
their life a little better.
Speaker 1 (37:37):
Right, fantastic. I love talking to an optimist. DESI thank
you so much for stopping by the window and talking
to us. This was really fascinating. I could talk to
you for hours and I really learned a lot today,
So you're great.
Speaker 3 (37:53):
Thank you for having me.
Speaker 4 (37:54):
This has been one of the coolest things I've ever done,
and it's been so nice talking to you.
Speaker 1 (37:59):
Yeah, you're well them anytime. All right, have a wonderful day.
Speaker 3 (38:03):
You too, Thank you.
Speaker 1 (38:04):
Okay, bye bye bye. All right, that was exceptionally informative.
I learned a lot, how about you? Yeah right, okay,
just a few things that I wrote down. Neurodiversity is
(38:27):
human diversity, right. I know. When I usually think of
the word diversity, I think of like culture and language
and even like food. But of course that applies to
our brains too. That makes sense. Difference isn't necessarily deficit.
(38:54):
There are, in fact circumstances in which things that make
us different are also the things that make us strong.
And the last thing I wrote is she said acceptance, advocacy,
and love are things that a neurodivergent child might need.
(39:17):
And it sounds to me like those are the things
that all human beings need, we just need them differently. Yeah,
let's go outside. Neurodiversity is human diversity. That one resonates
(39:40):
with me because we're all unique, all right? And if
we're all unique, doesn't that mean being unique is normal?
Could it be that difference itself is the most human
(40:02):
part of us? I don't know, what do you think? Yeah? Yeah, well,
(40:32):
thanks for coming by. Means a lot. It's always great
to see you. Really, you look great. Alive with Steve
(41:28):
Burns is a Lemonada media original. If you haven't subscribed
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(41:50):
Lemonadapremium dot com. Alive is hosted by Me Steve Burns
and produced by Jeremy Slutskin. Our editor is Christopher Champion Morgan.
Our associate producer is Aksha's Thurbeylu. Audio engineering by James Sparber.
Lemonada's SVP of weekly programming is Steve Nelson. Executive producers
are Jessica Cordover Kramer, Stephanie Whittles Wax and Me. We'll
(42:11):
see you next week and you look great, by the way.
Hey there, you are great to see you, come on in.
Welcome to Alive. So, okay, would you consider yourself to
be a normal person? Hmmm mm hmmm mm hmm, I'm
(00:44):
making tea? Do you want? You want tea?
Speaker 2 (00:46):
Okay, I'd say most of the time, I consider myself
to be a relatively normal person.
Speaker 1 (00:59):
But then I remember that I'm a fifty one year
old eccentric bachelor who has elected to live entirely alone,
off grid in the woods, halfway up a mountain like
some bald woodland cryptid. And I think maybe not so much.
(01:19):
I ask because you know, there's a lot of talk
about neurodivergence autism especially, and you know the way that
people who think or communicate differently relate to the rest
of us. Here's your tea. And I know that Blues
(01:44):
Clues had a really profound impact on the autistic community,
and I've always wanted to know why. In anyway, everyone's different, right, unique,
So it's not always so easy to tell who's neurodivergent anyway,
And what does the term even mean, you know? And
(02:11):
also who gets to decide what's normal? What do you think?
Huh huh? Okay, let's go Okay, all right, So. Desiree
(02:42):
Jones is an Associate professor of psychology and director of
the SHINE Lab that stands for Stigma, Human Interaction and
Neurodivergent Experiences at the University of Maryland. Before that, she
was a President's Postdoctoral Fellow, which sounds incredibly official to me.
She started at Wellesley studying both neuroscience and psychology. Apparently
(03:05):
one brain degree wasn't enough. Then she went on to
the University of Texas at Dallas for a master's and
applied cognition in neuroscience, followed by a PhD in psychological sciences.
Some people collect funko pops, desire collects diplomas. Apparently her
research is about autism, stigma, and intersectionality, basically all the
(03:26):
ways in which society decides who's normal and who isn't.
And in twenty twenty three she landed on the Forbes
thirty Under thirty Science list, which is to say, she's
one of those extraordinarily accomplished people who is also simultaneously
very very young and therefore totally intimidating to me. She's here, Hey,
(03:51):
how you doing today, Hi, Steve.
Speaker 3 (03:53):
I'm really great. I'm so glad that I could catch you.
Speaker 1 (03:56):
I am so excited that you're here. You're so kind
to join us. Do I call you Desire or do
I call you DESI?
Speaker 4 (04:03):
Yeah, I go buy DESI usually especially with friends. And yeah,
hopefully we can be friends.
Speaker 1 (04:08):
Are we friends? We're friends?
Speaker 3 (04:09):
I hope.
Speaker 4 (04:09):
So I hope I can tell everyone I'm friends with you, Steve.
I think, well, yeah, that would earn me a lot
of credibility.
Speaker 1 (04:15):
Listen, you came over to my window. You're willing to
talk to me about stuff I don't know anything about,
and you're super cool and super nice and we're totally friends,
and all right, thank you for being here. Thank you
so full disclosure. This is not a topic I know
a whole lot about, but it is something I would
like to know a whole lot about, in part because
(04:38):
of my former job. And we can get into that,
but before we get too far, I want to talk
about this term neurodivergence, because it's something I hear all
the time. We all hear all the time. I hear
a lot of people say it, but I feel like
people mean a lot of different things when I'm not
(04:58):
sure everyone's talking about the same thing. So what do
you think it is.
Speaker 4 (05:04):
Yeah, so I think you can't really talk about neurodivergence,
which without talking about this broader topic of neurodiversity, right,
so starting at the basic building blocks for that. You know,
this is something I talk a lot about with students
and things like that because you know, a lot of
people are interested in learning about this.
Speaker 3 (05:20):
But basically, you know, if you think.
Speaker 4 (05:23):
About the world, I think one of the things that
makes it so beautiful is that we're all different from
each other. You know, we have people different races, different backgrounds,
different heights, ages, things like that. Neurodiversity applies that idea
to our brains. It's kind of a framework looking at
you know, different types of brains. So you have neurotypical people.
These are people whose brains function in what's seen is
(05:45):
like a typical way. Society was kind of built around
their needs. You know, the way that they process the
world and respond to things and behave is seen as
like typical behaviors within like a culture or the world
around us. People whose brains process things a little diff
diferently might behave a little differently from those norms. They're
called neurodivergent. So this is a pretty broad term broad people.
(06:08):
I think, you know, like you were saying, a lot
of people can define it differently, So sometimes you might
see it used to define really only like developmental conditions
like autism and ADHD especially you know, I'm an autism researcher.
I have ADHD, so those are kind of in my framework.
But you know, if you think about it, people with
things like mental health conditions, mental illness that also affects
(06:30):
how you experience the world, how you process things. You know,
people with anxiety or depression or schizophrenia, and they're often
judged for their behaviors and in need of like extra
supports and things like that. And then you can even
go as far as talking about people with acquired things
like people who have had strokes, things like that. You know,
that affects the brain, that affects how you experience the
(06:53):
world around you and respond. So I think that I'm
not trying to gate keep you know, neurodiversity, neurodivergence. I
think that you know, if a person is experiencing these difficulties,
they're kind of common across these different types of conditions.
Then like, I think it's fine to label yourself as neurodivergent.
Speaker 1 (07:12):
Right on. I like what you're saying. What I'm what
I'm hearing you say, at least certainly in the beginning
of that is it's less about differants and more about
the same sort of diversity that is part of human diversity, right,
Like in a way it when you think of neurodiversity,
(07:34):
it's like biodiversity, is this is a function of the
human condition. There is diversity, right, So of course there
is neurodiversity, right.
Speaker 4 (07:42):
I just want to say one thing, you know, I
think that a lot of times people will take that
diversity thing and kind of run with it and say, oh,
it's not a disability, you know, then everyone's a little
autistic or things like that. But it also can be
very disabling because of the social structures that we have
in our world.
Speaker 1 (07:58):
What are some ways in which it might actually be
a strength, like in school or in work, or in
a relationship or something.
Speaker 4 (08:04):
One of the big things is because you can think
differently because you're neurodivergent.
Speaker 3 (08:09):
You can be really creative oftentimes.
Speaker 4 (08:11):
So a lot of neurodivergent people find that they really
excel at creative things like the arts or being organized
and following a routine and they can be really good
at things like programming because of.
Speaker 1 (08:21):
That, is there sort of a dynamic of trade off
involved in that. You know, if there's you know, a
hyper focus and a hyper utility in one area, does
that ever mean there's a deficit somewhere else.
Speaker 4 (08:33):
I'd say that one of the biggest problems with hyper
focus is that it can you know, it doesn't necessarily
create deficits, but it can create problems in social relationships.
If you're you know, really excited and enthusiastic about something,
you're really into it, you want to talk about it
a lot to someone. I'm someone who's a big talker,
but they're just not interested. You know, they're like very bored,
(08:55):
and you know they're like, oh my gosh, this person
is still talking about this. You know, that can make
get difficult to form relationships, and that's often a response
that neurodivergent people often receive. Another thing is if you're
you know, two into something, it can mean you know,
you have an aspect of perfectionism. So maybe you're you know,
really detail oriented. You're like, I want to find all
(09:16):
the research about this area for this project and get
it perfect but then it's hard to meet deadlines and
things like that.
Speaker 1 (09:22):
Oh yeah, I can relate to that. I mean, I
live off gride in a house halfway up a mountain.
You know. Uh, you know I I am. I am
an introverts introvert, you know, and it does feel at times.
It's not that I don't prefer to be around people,
(09:43):
it's that I cannot. You know that there are times
where we're functioning around people would be not really an
option almost you know, it's hard to describe, but I
feel like, you know what I'm talking about.
Speaker 4 (09:58):
I do, and you know, I think this is really
common for neurodivergent people. So it's something you know, they
call it autistic burnout for autism, but a lot of
it's because I don't know, maybe you can relate to this,
or maybe people at home can relate to this. It's like,
when you're interacting with people, you can't always be fully yourself, right.
Maybe you can think of a situation where you've had
(10:20):
to kind of perform for people, like you're meeting a
partner's parents for the first time, or you're at an interview,
or you're guest on a podcast, so you know, you
feel like you have to be your best version of yourself.
Neurodivergent people feel like that pretty much, like all the
time and all of their interactions.
Speaker 3 (10:37):
They're taught to like hide who they are. It's called masking.
Speaker 1 (10:40):
Yeah, tell me about masking.
Speaker 3 (10:42):
Yeah.
Speaker 4 (10:42):
So it's kind of like a sometimes conscious, sometimes just
automatic response to a lot of the stigma and discrimination
and social challenges that neurodivergent, especially autistic people face.
Speaker 3 (10:54):
So they might you know.
Speaker 4 (10:55):
Make an effort to se debstrate, change the tone and
volume of their voice. They might have a script that
they follow in conversations to make it.
Speaker 3 (11:02):
More comfortable for them.
Speaker 4 (11:04):
You know, they're basically altering their social kind of abilities
and social performance to better fit in and gain acceptance.
Like I said, it can be completely non conscious, though,
but it can lead to a lot of challenges, right.
It's exhausting, you know, not being able to be yourself
around people.
Speaker 1 (11:22):
Oh my goodness, I mean neurotypical neurodivergent. I think everyone
can relate to the weight of that feeling, you know.
Speaker 3 (11:32):
Yeah, exactly Why.
Speaker 1 (11:34):
Does it seem like diagnoses are rising so fast? Is
it because that it is more common or is it
because there's more focus on it.
Speaker 4 (11:43):
We do see that, you know, diagnoses are rising in
large part. You know this is really because we've gotten
much better at diagnosing people. So I think we've gotten
better at detecting autism earlier, so they can do it
like two to three years of age pretty reliably now,
and we're also going to better at diagnosing it in
populations that you know, don't fit the kind of standard
(12:05):
stereotypical model. So like what like it was frequently white males,
like little boys, there used to be a four to
one gender ratio, and then autistic people of color.
Speaker 3 (12:16):
A lot of people of color have.
Speaker 4 (12:18):
Been misdiagnosed as having like behavioral conditions first and then
they later go on to get an autism diagnosis. They've
also made some changes around the diagnosis of autism, so
there used to be separate conditions. Like maybe you've heard
of Asperger syndrome that's now under the umbrella of autism,
but until twenty thirteen, it was a separate diagnosis.
Speaker 1 (12:43):
Tell me more about why girls in particular and people
of color so often get missed in their diagnosis until
later in life. What's that about.
Speaker 4 (12:55):
Yeah, so a lot of research has shown that can
really a lot of can be attributed to stigma, just
both kind of stereotypes about what autism looks like, and
then also some bias and providers.
Speaker 1 (13:08):
What biases are you talking about?
Speaker 4 (13:09):
Specifically, there's a bias about like black families, So they
were making judgments on family structures, like maybe both parents
are working and you know, the kids being taken care
of in daycare or things like that, or they're not
in like a traditional preschool things like that, or you know,
the provider kind of making judgments about behaviors that might
(13:30):
be typical for black children versus white children.
Speaker 3 (13:34):
There was another study where they kind of, you know,
it wasn't.
Speaker 4 (13:36):
Actual kids, but they gave a description of like behaviors
that were atypical, and they asked students to like identify
a diagnosis. When they labeled the kid is white, the
students were more likely to say that kid was autistic
versus if the student or if the kid was labeled
as black.
Speaker 3 (13:51):
Students usually attributed it to.
Speaker 4 (13:53):
Like it's called oppositional defiant disorder or like behavioral conditions.
Speaker 1 (13:58):
What is oppositional defiant disorder?
Speaker 4 (14:02):
Yeah, so that's a disorder that's diagnosed often in childhood
and it's really you know, kind of having these defiant behaviors.
So it's you know, kind of doing not what you're told,
or these externalizing, acting out types of behaviors. So it's
like kids who might be very resistant in nature, or
kids who might have hitting and behaviors like that.
Speaker 1 (14:23):
So I want to be clear. So this this paper
determined or found that later in life, someone who might
have been dismissed as having you know, oppositional defiance disorder
actually met the criteria for autism.
Speaker 4 (14:37):
Yes, there have been several studies that have shown that,
you know, black children are more likely to have a
more diagnoses before reaching the autism diagnosis. That's kind of
their final diagnosis, more time to reach an autism diagnosis,
so they're diagnosed at a later age, and then you know,
more misdiagnoses at first, so things like ADHD or behavioral difficulties.
(14:58):
That does sound like bias, Yeah, exactly, So that's kind
of why we talk about that. For girls, it can
be a little more complicated. And you know, again this
can also relate to people of color and stuff. We
think that girls might mask more so you know, maybe
they're able to fly under the radar. Yeah, so that
can be a thing. Maybe you know, doctors aren't as
(15:19):
good at recognizing when someone's masking. That's often also the
case with like black autistic people. You know, their top
two mask and conceal their behaviors to protect themselves.
Speaker 3 (15:29):
So that can make it harder.
Speaker 4 (15:30):
You know, on top of these biases, you know, just
some of these differences in what a behavior might look
like in these assessments.
Speaker 1 (15:38):
I wonder if young girls are sort of asked to
mask anyway, so they might be they might be good maskers.
Speaker 4 (15:47):
Yeah, And you know, when we look at autistic girls,
we do see, like, first of all, girls are kind
of socialized to play with toys like dolls and stuff
like that, and those are some of the tools we
use in the like autism diagnostic assessment that seems like
gold standard, it's called the ADOS. So you know, maybe
they're more likely to be interested in those social toys
(16:07):
or another study showed that, you know, autistic girls often
have interests that are like more typical, but they're just
really intense in nature, whereas autistic boys might be more
interested in kind of more obscure types of things interesting.
Speaker 1 (16:24):
Do do Queer and autistic identities overlap in similar ways,
you know that that are meaningful for belonging, support and
everything else.
Speaker 4 (16:36):
Yeah, so this unfortunately is an area that's like very
much pretty new in research. There wasn't a lot of
focus on LGBTQ plus autistic people. You know, they were
kind of just like I said, autism research was very
like homogenous for a while. So I think one thing
that's really interesting that's come out of it is that
(16:57):
a lot more autistic people are transgender or non binary
compared to the general population. And yeah, so even you know,
within people who I've worked with in my study that
you know, I don't aim to recruit for that, but
in my dissutation, like I want to say, like a
close to a third of people identified as non binary.
And there's a theory that maybe autistic people you know,
(17:19):
don't perceive these gender norms in the same way because
you know, of their differences in thinking, you know, it
might be something like that. You know, we haven't really
I think the research is just kind of getting started
in it and trying to figure this out. But yeah,
a lot of autistic people do identify as trends or
non binary.
Speaker 1 (17:37):
That is I would love to read about that that
is really interesting research. So they're thinking perhaps they don't
perceive gender in the same way and then also don't
apply that perception to themselves.
Speaker 4 (17:53):
I think we find a similar thing for you, like
being a sexual or a romantic. That's also higher prevalence
foreign eurodivergent people, so you know, maybe they also you know,
it could be a brain thing. It could be kind
of a combination of like brain and like socialization. There's
not enough research really to say what the cause of
this is. We're just you know, seeing this consistent pattern
(18:14):
of you know, different ways of thinking about things like
gender and sexuality and autistic people.
Speaker 1 (18:22):
You said asexual and a romantic. What is the distinction
between those two.
Speaker 4 (18:26):
So when we think about a sexuality, that's really referring
to sexual desires, so you know, it's not about sexual behaviors.
Some asexual people aren't sexually attracted to people, you know,
they they don't form those sexual attractions. Some people call
themselves like demisexual, so that means that they only form
you know, these again sexual attractions to certain people, like
(18:48):
once they've known them a little better. In terms of
a romantic that's again that kind of like attachment behavior.
So when you're in a romantic relationship. I think the
big way to distinguish this is, you know, you can
of like casual hookups that would be like sexuality, sexual behaviors,
sexual attraction, whereas like a romantic relationship that would be
(19:08):
you know, that romanticism. You know, you can have a relationship,
a very successful relationship with someone that's romantic where you
don't engage in sex or sexual behaviors for whatever reason,
just like you can have sex without that romantic attachment.
Speaker 1 (19:23):
Yes, I was about to ask because that was possible
asking for a friend, of course, But what is what
is the double empathy problem? This is something that I
hear a lot about in this conversation.
Speaker 3 (19:36):
When we look at research.
Speaker 4 (19:37):
You know, there are a lot of studies looking at
interactions between autistic and non autistic people and comparing them
to interactions between you know, just two autistic people or
two non autistic people.
Speaker 3 (19:48):
And interestingly, a lot.
Speaker 4 (19:50):
Of this research shows that, you know, when you have
two autistic people, they don't have a lot of these.
Speaker 3 (19:54):
Difficulties in their interactions.
Speaker 4 (19:56):
They can understand each other better, you know, understand what
they're saying, what they're expressing, and they get along a
little better, and these interactions, you know, they rate them
pretty positively.
Speaker 3 (20:04):
If autistic people just had.
Speaker 4 (20:06):
Broad social deficits, you wouldn't expect that, right, You'd expect
two autistic people to you know, have a really poor interaction,
and that's not what we're seeing in research. Many times,
these two autistic people get along, you know, just as
well as two non autistic people and can communicate just
as effectively. So the double empathy problem is really saying
that it's not just autistic people having trouble understanding and
(20:29):
empathizing with non autistic people.
Speaker 3 (20:31):
It's a two sided thing.
Speaker 4 (20:33):
You know, non autistic people also have trouble you know,
understanding and interpreting autistic communication.
Speaker 1 (20:39):
Right, So how can we do that? How can we
better interpret and understand the autistic community.
Speaker 4 (20:46):
I think the biggest thing is just getting to know
and kind of understand autistic people around you. So we
have some research and we've looked at how people kind
of perceive autistic people, like the.
Speaker 3 (20:59):
Stereotypes I have.
Speaker 4 (21:00):
We call it, like first impressions would show a ten
second video of autistic people. You know, sometimes we don't
even say that they're autistic. We ask people, what do
you think of this person, like, would you hang out
with them? Those types of things, And we find that
people who have more knowledge about autism and also have
you know, more firsthand experience with autistic people, both of
those things are associated with writing autistic people better. So
(21:23):
I think just you know, being able to you know,
whether you have autistic friends or you know, you follow
people who are autistic online, you can learn to understand
them just like you can, you know, learn to understand
how your friend from a different culture might express themselves differently.
So I think that that's social contact, and you know,
interacting with and learning from and listening to autistic people
(21:43):
is a really important component of that.
Speaker 1 (21:45):
Yeah, that's what I found in my lived experience. And
I have some autistic friends, you know, I think we
all do, and that's what I found. It's just like, oh,
it's just a slightly different code. I get it, you know. Yeah,
and listening as been big a big part of that. Yeah,
So why do you think people still assume that autism
(22:06):
means lack of empathy?
Speaker 4 (22:08):
One thing that I found was really common was that
people often learned about autism from you know, like TV
shows and things like that. And I think If you
think about autistic characters that are represented, it's often like
a very small range of different people. You know, there's
much more diversity and actual autistic people, so you often
see this kind of like Asperger's phenotype, where it's.
Speaker 3 (22:31):
Like a white guy who's like.
Speaker 4 (22:33):
Really socially awkward but like really smart and talented. So
you know, common ones are like Sheldon from The Big
Bang Theory, or the guy and the Good Doctor, or
you can see that savant type of thing where people
really struggle with the social connection, like rain Man, which
is a really it's been actually really harmful stereotype for
many autistic people to overcome.
Speaker 3 (22:54):
So I think that's one of the problems.
Speaker 4 (22:57):
You know, autistic people have often been portrayed as like
aloof and cold, when in reality, many autistic people avoid
interactions because they've faced so much discrimination and bullying and
things like that and have had so many negative experiences,
so they might withdraw a little bit be hesitant to
form some of these interactions, but it doesn't mean they
don't want friends, right in that.
Speaker 1 (23:19):
And I'm sure that just you know, creates more masking
and more anxiety, and it just creates that cycle back
and forth because of the double empathy problem going over
around and around. Do you think the stigma is shrinking
or is it just kind of morphing into subtler forms.
Speaker 4 (23:36):
I think that especially recently, we've had a lot of
efforts to increase autism awareness and that's been really effective.
So a lot of people know what autism is at
least on a very basic level, but we certainly have
a ways to go. There have been especially many very
recent dialogues about autism that are very dangerous and harmful,
(23:56):
you know, saying things like that autistic people can never
do like all of these things, you know, like they
can never play baseball, they can never have a meaningful life.
Speaker 3 (24:05):
Ah.
Speaker 4 (24:06):
That's very stigmatizing and it's just like a vast over generalization.
And it's also dangerous because it kind of says that
a person's value is tied to their abilities, which I
think is a really harmful notion. So it's something we
see a lot too. But I mean the term for
it is ableism, you know, discrimination based on ability, and
that's still really common. We see it in the workplace,
(24:29):
we see it in romantic relationships, friendships. One of the
biggest things we find consistently in our relationship is that
non autistic people are really reluctant to form relationships with
autistic people. You know, they have a much reduced interest
in that compared to you know, friendships with people.
Speaker 3 (24:44):
With other conditions.
Speaker 1 (24:46):
Why do you think that is?
Speaker 4 (24:47):
I think part of it, you know, is, you know,
again these kind of misinterpretations of autistic communication. Oftentimes people
might interpret an autistic person as being disinterested or awkward
or things like that, and they're less interested in.
Speaker 3 (25:01):
Forming friends with them because of that.
Speaker 4 (25:03):
One interesting thing is that we only really see that
for non autistic people. If I show videos of autistic
people to other autistic people, they'll still rate them as
awkward things like that, but they don't have that reduced
social interest, which suggests that you know, neurodivergent or especially
autistic people might not use that, might not put as
much weight on that when they're forming friends. It's like
(25:24):
I can be friends with someone who's awkward or things
like that. You know, that's not a barrier for us,
whereas it might be a big barrier for a lot
of you know, neurotypical people.
Speaker 1 (25:34):
Yeah, a lot of it is about you know, seeing
past your assumption of the cue that you're reading.
Speaker 3 (25:38):
You know.
Speaker 1 (25:39):
I remember I was dating someone who had ADHD, and
for a while, I was like, this person is just
being very rude, you know, and I was misinterpreting a
lot of stuff and I was like, huh. And then
and then I figured out what was going on, and
we talked and we communicated and it was cool, you know,
(25:59):
But but that was on me, you know, I was
I was making an assumption there.
Speaker 2 (26:05):
You know.
Speaker 3 (26:05):
That's a fantastic way of putting it.
Speaker 4 (26:07):
You know, I think a lot of this research has
come out showing you know, for my dissertation, I interviewed
autistic people about their social experiences, and one thing that
really came out of it was that people were very
frequently misinterpreted. So autistic women said that people often said
that they had like resting bitch face and thought that
they were really angry and things like that all the time.
You know, Black autistic people said that they felt like
(26:29):
they had to be really conscious of their behaviors so
they weren't interpreted as aggressive or you know, lazier a
lot of these stereotypes. And then just in addition to that,
you know, a lot of autistic people just felt like
people even who were close to them, didn't understand them,
you know, their motives, their intentions.
Speaker 1 (26:51):
One thing you said that really struck me. It was
this masking around policing, you know, because you know, you
don't want your behavior to be misinterpreted. You don't want
you don't want to have a misinterpreted neurodivergent behavior compounding
a bias in that moment. You know. That does sound
(27:14):
particularly fraud So a lot of this sounds like it's on,
it's on. Or the double empathy problem, right, which I
think is really fascinating, means that both sides have to try,
you know, and uh, and how can we accommodate and
(27:36):
even advocate without alienating.
Speaker 4 (27:39):
Yeah, so I think that changes are needed, you know,
both on an individual level. You know, I've talked a
lot about increasing our understanding autistic ways of communication, reducing
our stigma towards autism, so being more accepting and accommodating,
But I also think we need some structural changes to
help autistic people.
Speaker 3 (27:56):
Right.
Speaker 4 (27:56):
So one thing that's really helpful is like increased flexibility,
so you know, being being more flexible with your friends
if you know, maybe they're not feeling a social interaction.
Maybe they're not feeling like going out, maybe they're autistic
or neurodivergent, they're just really burnt out. They'd rather stay
in or just like having some time to themselves.
Speaker 3 (28:15):
You know.
Speaker 4 (28:15):
I think oftentimes we get labeled as flaky for canceling,
and you know, it can be tough, but you know,
having that flexibility. I also think just communicating your expectations socially,
so you know, knowing, you know, kind of laying out
being direct about what you're expecting of someone. Like we
had like a seminar here and we were kind of
talking about like norms social norms, and we're writing them out,
(28:39):
and we were saying, like how many of these are
actually necessary in a social interaction, And we realized like
very few of them were actually necessary, but they were
often things that are used to kind of stigmatize.
Speaker 3 (28:49):
Or exclude neurodivergent people.
Speaker 4 (28:51):
Like eye contact is a good one, Like, you know,
it can be helpful for non autistic neurotypical people to
like read emotions from someone's eyes, but is that really necessary.
You know, listen to the words they're saying in any cases,
that will tell.
Speaker 3 (29:05):
You exactly what you need to know. About how they're feeling.
Speaker 1 (29:07):
Ask them what would you say to a parent who
who's wondering how to prepare their child, their autistic child
to enter a world that often confuses diversity for disorder.
Speaker 4 (29:24):
I think that this is a really tough thing for
a lot of parents, especially because you know, autism is
a spectrum, and you know, some people's kids can have
really high support needs where you know, they might require
around the round the clock type of help with you know,
daily living and different types of skills, a lot more support,
whereas you know, some people's kids may achieve independence and
(29:47):
need less of that support. So things can look very
different for different parents of different autistic people, just like
they can look, you know, different for parents of neurotypical people.
Right that, With that in mind, I think they're like
three things that are really important for helping to prepare
your autistic child for the world, and that's acceptance, advocacy,
(30:08):
and love. So what I mean by acceptance is, you know,
accepting your child for who they are, especially who they
are now, not.
Speaker 3 (30:15):
Who you hope they'll be in the future.
Speaker 4 (30:17):
You know, I think parents can pretty commonly expect things
of their kids or hope for things of their kids.
But you know, I think just appreciating who they are.
Speaker 3 (30:25):
Now in the moment.
Speaker 4 (30:26):
You know, they have value their your kids, so just
you know, accepting them for who they are now, kind
of regardless again of that ability level or you know,
challenges they might face and things like that. Advocacy is
also really important. So many parents have to advocate for
their kid kind of throughout their life in school, you know,
getting them the supports they need. There's something called an
(30:48):
IEP in school that's really helpful for many disabled kids. Also,
things like you know, pushing your doctor to you know
get a certain support like therapy or something, or even
just getting that initial autism diagnosis if your kid has
the ability, teaching them to advocate for themselves, right, you
know that kind of thing. And then finally, I think
(31:08):
love is pretty self explanatory, right, But what I mean
by that is just like giving your kid a space
to know that they belong, they're valued, they're accepted. So
as an ero divergent kid, like this was really helpful
for me. I was a weird kid, Like I got
obsessed with Matt Damon.
Speaker 3 (31:25):
For like three years. I'm someways doing He's a.
Speaker 1 (31:29):
Great accurate and it's like he was a nice guy
from Boston. He wrote Goodwill Hunting when he was younger
than you.
Speaker 4 (31:38):
You don't have to tell me, like I was obsessed
with him to the point that I was like actively
bullied for this, Like I was a weird kid. I'd say, yeah,
but my parents were just like whatever. And the point
is like I was weird as a kid, and not
in like a really cute way, like oftentimes in a
way that got me picked on or people thought I
was like genuinely weird, but I never felt that way
with my parents.
Speaker 3 (31:59):
I'm sorry, and it's right, especially with other kids, because I'll.
Speaker 1 (32:02):
Tell you just being myself here, Yeah, being bullied, I
always say, you know, being bullied when I was young.
It's difficult for me to think of anything that was
more formative in my life, and it still shapes my
perceptions to this day. You know, I am still aware
of the way in which I was fired in that
(32:23):
particular crucible. You know, it's still it's had a profound impact,
I think on anyone who's experienced it, you know, And
you were really Matt Damon, I wanted to be a mime.
Speaker 4 (32:38):
Oh wow, yeah, you're you're a performer. You know, you
became a performer. So I think it worked out in.
Speaker 1 (32:45):
The end, you know, Yeah, I guess I was asking
for it in a way.
Speaker 4 (32:49):
I was like the kid who corrected the teacher and like,
you know, that doesn't make you a lot of friends,
or like reminding the teacher like you forgot to give
us homework like that, I'll.
Speaker 1 (32:59):
Get your bullied. DESI that'll get you bullied. Yeah. Yeah, wow,
that's that's strong coffee. Yeah, talk to me a little
about neurodivergence and emergent technologies. Now, we're all relating through
screens all the time, right You and I are relating
through that right now. And how do all these screens
(33:22):
factor in? You know, is is it helping? Is it helpful?
Is it hurtful? Like what's up?
Speaker 4 (33:28):
Yeah, So this whole issue of social media and technology
can be really interesting for autistic people. So, you know,
in my dissertation, like I said, I interviewed autistic people
about their social experiences and one thing that came out,
especially for black autistic people and autistic women, was the.
Speaker 3 (33:45):
Internet was like really powerful for them.
Speaker 4 (33:48):
So that's where most of their friends were online, you know,
people on like Twitter, or you know, I had people
who were like I found people who are interested in
k POMP like me. It's like I've been a really
good tool for a lot of people to you know,
find people who are similar to them, maybe other neurodivergent people,
other people with overlapping interests, and there's a lot less
social pressure than like a face to face interaction. So
(34:09):
we did a study here at UMD with kids and
many of the kids said like, oh, I met like
friends online through like this game I played, and you know,
I don't really have friends in person.
Speaker 3 (34:19):
That said, it can also open up some trouble for
neurodivergent people.
Speaker 4 (34:24):
So cyber bullying is something that can be really common
for neurodivergent people. I think, like especially kids who are
in school. You know, they can have videos spread around
them making fun of them. When I was in high school,
there was a Facebook group that was called like this
kid has Asperger syndrome, and like a bunch of people
were joining it, and that's.
Speaker 3 (34:41):
Really messed up, like why would you do that?
Speaker 4 (34:45):
But you know, that is a really common thing. Many
neurodivergent people get bullied. I had someone who was in
my dissertation who said, like they used four chan a lot,
and like obviously they get bullied all the time on there.
There's a very like aggressiven and on that website. So
I do think it can be both. I think it
also is tough because for many autistic people, those relationships
(35:08):
that they have online, they'd like them to expand into
something more. They'd like to have that face to face
you know, interaction and connection, but they can't, you know,
for whatever reasons. It can sometimes be a barrier and
be a little harder. You know, they still have these
unmet social needs. So I think it can be both
a benefit and a challenge. I'll also just add a
couple more like quick points.
Speaker 1 (35:27):
Yeah please.
Speaker 4 (35:28):
Two benefits outside of relationships for these kind of online interactions.
Speaker 3 (35:32):
Are a you know, you get more flexibility.
Speaker 4 (35:35):
You could go to school online or you know, work virtually.
It does help for like accommodations for people you know,
maybe you just like can't go in one day or you.
Speaker 3 (35:44):
Have a communication barrier.
Speaker 4 (35:46):
And then the other thing is like text to speech
programs and assistive communications. So many autistic people don't speak
with words, but they're able to communicate through like an
iPad or something like that. So I think technology has
been like both really great, but it can also you know,
present some dangers.
Speaker 1 (36:02):
What about the future, where do you think this is going?
Do you have hope? You seem like a very hopeful person.
It seems like we're gonna we're going to learn to
accommodate a little bit more. What do you what do
you think?
Speaker 4 (36:12):
I like to think that, you know, the universe is
shifting towards you know, this balance, this acceptance for you know, everyone,
We're seeing over time we are becoming more accepting of differences.
I think that with the way that the world is now,
it's so global, you know, you have to be accommodating
of people who are different from you and accepting the things,
whether it's people from different cultures, different backgrounds, or you know,
(36:35):
people with different brains. So I'm really hopeful towards that,
you know, I already just I've been in autism research
for I guess like almost ten years now, and I've
already seen a big change, you know, not just within
you know, the field in general, but within my own
work and my own understanding, my own interactions with autistic
collaborators and students and you know, even participants who I'm
(36:59):
talking to, and every person who I talk to, I
walk away from that conversation having learned something. So I
think that's really cool. And I really just believe in
the best in people. So I really do think that
it's going to get better. You know, I've seen it
getting better for a lot of autistic people I know.
And yeah, I know that a lot of them, you know,
(37:21):
they say it's not great now, but like they also
have hope for the future. And you know, I hope
that we can kind of shift our understanding of autism
to be more accepting because regardless of a person's ability level,
things like that, if we reduce stigma, we can make
their life a little better.
Speaker 1 (37:37):
Right, fantastic. I love talking to an optimist. DESI thank
you so much for stopping by the window and talking
to us. This was really fascinating. I could talk to
you for hours and I really learned a lot today,
So you're great.
Speaker 3 (37:53):
Thank you for having me.
Speaker 4 (37:54):
This has been one of the coolest things I've ever done,
and it's been so nice talking to you.
Speaker 1 (37:59):
Yeah, you're well them anytime. All right, have a wonderful day.
Speaker 3 (38:03):
You too, Thank you.
Speaker 1 (38:04):
Okay, bye bye bye. All right, that was exceptionally informative.
I learned a lot, how about you? Yeah right, okay,
just a few things that I wrote down. Neurodiversity is
(38:27):
human diversity, right. I know. When I usually think of
the word diversity, I think of like culture and language
and even like food. But of course that applies to
our brains too. That makes sense. Difference isn't necessarily deficit.
(38:54):
There are, in fact circumstances in which things that make
us different are also the things that make us strong.
And the last thing I wrote is she said acceptance, advocacy,
and love are things that a neurodivergent child might need.
(39:17):
And it sounds to me like those are the things
that all human beings need, we just need them differently. Yeah,
let's go outside. Neurodiversity is human diversity. That one resonates
(39:40):
with me because we're all unique, all right? And if
we're all unique, doesn't that mean being unique is normal?
Could it be that difference itself is the most human
(40:02):
part of us? I don't know, what do you think? Yeah? Yeah, well,
(40:32):
thanks for coming by. Means a lot. It's always great
to see you. Really, you look great. Alive with Steve
(41:28):
Burns is a Lemonada media original. If you haven't subscribed
to Lemonada Premium yet, now's the perfect time. You can
listen to the show completely ad free. Plus you'll unlock
exclusive bonus content from me as I reflect on this episode.
Just press subscribe on Apple Podcasts, head to Lemonada Premium
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(41:50):
Lemonadapremium dot com. Alive is hosted by Me Steve Burns
and produced by Jeremy Slutskin. Our editor is Christopher Champion Morgan.
Our associate producer is Aksha's Thurbeylu. Audio engineering by James Sparber.
Lemonada's SVP of weekly programming is Steve Nelson. Executive producers
are Jessica Cordover Kramer, Stephanie Whittles Wax and Me. We'll
(42:11):
see you next week and you look great, by the way.
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The Burden
The Burden is a documentary series that takes listeners into the hidden places where justice is done (and undone). It dives deep into the lives of heroes and villains. And it focuses a spotlight on those who triumph even when the odds are against them. Season 5 - The Burden: Death & Deceit in Alliance On April Fools Day 1999, 26-year-old Yvonne Layne was found murdered in her Alliance, Ohio home. David Thorne, her ex-boyfriend and father of one of her children, was instantly a suspect. Another young man admitted to the murder, and David breathed a sigh of relief, until the confessed murderer fingered David; “He paid me to do it.” David was sentenced to life without parole. Two decades later, Pulitzer winner and podcast host, Maggie Freleng (Bone Valley Season 3: Graves County, Wrongful Conviction, Suave) launched a “live” investigation into David's conviction alongside Jason Baldwin (himself wrongfully convicted as a member of the West Memphis Three). Maggie had come to believe that the entire investigation of David was botched by the tiny local police department, or worse, covered up the real killer. Was Maggie correct? Was David’s claim of innocence credible? In Death and Deceit in Alliance, Maggie recounts the case that launched her career, and ultimately, “broke” her.” The results will shock the listener and reduce Maggie to tears and self-doubt. This is not your typical wrongful conviction story. In fact, it turns the genre on its head. It asks the question: What if our champions are foolish? Season 4 - The Burden: Get the Money and Run “Trying to murder my father, this was the thing that put me on the path.” That’s Joe Loya and that path was bank robbery. Bank, bank, bank, bank, bank. In season 4 of The Burden: Get the Money and Run, we hear from Joe who was once the most prolific bank robber in Southern California, and beyond. He used disguises, body doubles, proxies. He leaped over counters, grabbed the money and ran. Even as the FBI was closing in. It was a showdown between a daring bank robber, and a patient FBI agent. Joe was no ordinary bank robber. He was bright, articulate, charismatic, and driven by a dark rage that he summoned up at will. In seven episodes, Joe tells all: the what, the how… and the why. Including why he tried to murder his father. Season 3 - The Burden: Avenger Miriam Lewin is one of Argentina’s leading journalists today. At 19 years old, she was kidnapped off the streets of Buenos Aires for her political activism and thrown into a concentration camp. Thousands of her fellow inmates were executed, tossed alive from a cargo plane into the ocean. Miriam, along with a handful of others, will survive the camp. Then as a journalist, she will wage a decades long campaign to bring her tormentors to justice. Avenger is about one woman’s triumphant battle against unbelievable odds to survive torture, claim justice for the crimes done against her and others like her, and change the future of her country. Season 2 - The Burden: Empire on Blood Empire on Blood is set in the Bronx, NY, in the early 90s, when two young drug dealers ruled an intersection known as “The Corner on Blood.” The boss, Calvin Buari, lived large. He and a protege swore they would build an empire on blood. Then the relationship frayed and the protege accused Calvin of a double homicide which he claimed he didn’t do. But did he? Award-winning journalist Steve Fishman spent seven years to answer that question. This is the story of one man’s last chance to overturn his life sentence. He may prevail, but someone’s gotta pay. The Burden: Empire on Blood is the director’s cut of the true crime classic which reached #1 on the charts when it was first released half a dozen years ago. Season 1 - The Burden In the 1990s, Detective Louis N. Scarcella was legendary. In a city overrun by violent crime, he cracked the toughest cases and put away the worst criminals. “The Hulk” was his nickname. Then the story changed. Scarcella ran into a group of convicted murderers who all say they are innocent. They turned themselves into jailhouse-lawyers and in prison founded a lway firm. When they realized Scarcella helped put many of them away, they set their sights on taking him down. And with the help of a NY Times reporter they have a chance. For years, Scarcella insisted he did nothing wrong. But that’s all he’d say. Until we tracked Scarcella to a sauna in a Russian bathhouse, where he started to talk..and talk and talk. “The guilty have gone free,” he whispered. And then agreed to take us into the belly of the beast. Welcome to The Burden.