Speaker 1: Hey there, you are great to see you, come on in.
Speaker 1: Welcome to Alive. So, okay, would you consider yourself to
Speaker 1: be a normal person? Hmmm mm hmmm mm hmm, I'm
Speaker 1: making tea? Do you want? You want tea?
Speaker 2: Okay, I'd say most of the time, I consider myself
Speaker 2: to be a relatively normal person.
Speaker 1: But then I remember that I'm a fifty one year
Speaker 1: old eccentric bachelor who has elected to live entirely alone,
Speaker 1: off grid in the woods, halfway up a mountain like
Speaker 1: some bald woodland cryptid. And I think maybe not so much.
Speaker 1: I ask because you know, there's a lot of talk
Speaker 1: about neurodivergence autism especially, and you know the way that
Speaker 1: people who think or communicate differently relate to the rest
Speaker 1: of us. Here's your tea. And I know that Blues
Speaker 1: Clues had a really profound impact on the autistic community,
Speaker 1: and I've always wanted to know why. In anyway, everyone's different, right, unique,
Speaker 1: So it's not always so easy to tell who's neurodivergent anyway,
Speaker 1: And what does the term even mean, you know? And
Speaker 1: also who gets to decide what's normal? What do you think?
Speaker 1: Huh huh? Okay, let's go Okay, all right, So. Desiree
Speaker 1: Jones is an Associate professor of psychology and director of
Speaker 1: the SHINE Lab that stands for Stigma, Human Interaction and
Speaker 1: Neurodivergent Experiences at the University of Maryland. Before that, she
Speaker 1: was a President's Postdoctoral Fellow, which sounds incredibly official to me.
Speaker 1: She started at Wellesley studying both neuroscience and psychology. Apparently
Speaker 1: one brain degree wasn't enough. Then she went on to
Speaker 1: the University of Texas at Dallas for a master's and
Speaker 1: applied cognition in neuroscience, followed by a PhD in psychological sciences.
Speaker 1: Some people collect funko pops, desire collects diplomas. Apparently her
Speaker 1: research is about autism, stigma, and intersectionality, basically all the
Speaker 1: ways in which society decides who's normal and who isn't.
Speaker 1: And in twenty twenty three she landed on the Forbes
Speaker 1: thirty Under thirty Science list, which is to say, she's
Speaker 1: one of those extraordinarily accomplished people who is also simultaneously
Speaker 1: very very young and therefore totally intimidating to me. She's here, Hey,
Speaker 1: how you doing today, Hi, Steve.
Speaker 3: I'm really great. I'm so glad that I could catch you.
Speaker 1: I am so excited that you're here. You're so kind
Speaker 1: to join us. Do I call you Desire or do
Speaker 1: I call you DESI?
Speaker 4: Yeah, I go buy DESI usually especially with friends. And yeah,
Speaker 4: hopefully we can be friends.
Speaker 1: Are we friends? We're friends?
Speaker 3: I hope.
Speaker 4: So I hope I can tell everyone I'm friends with you, Steve.
Speaker 4: I think, well, yeah, that would earn me a lot
Speaker 4: of credibility.
Speaker 1: Listen, you came over to my window. You're willing to
Speaker 1: talk to me about stuff I don't know anything about,
Speaker 1: and you're super cool and super nice and we're totally friends,
Speaker 1: and all right, thank you for being here. Thank you
Speaker 1: so full disclosure. This is not a topic I know
Speaker 1: a whole lot about, but it is something I would
Speaker 1: like to know a whole lot about, in part because
Speaker 1: of my former job. And we can get into that,
Speaker 1: but before we get too far, I want to talk
Speaker 1: about this term neurodivergence, because it's something I hear all
Speaker 1: the time. We all hear all the time. I hear
Speaker 1: a lot of people say it, but I feel like
Speaker 1: people mean a lot of different things when I'm not
Speaker 1: sure everyone's talking about the same thing. So what do
Speaker 1: you think it is.
Speaker 4: Yeah, so I think you can't really talk about neurodivergence,
Speaker 4: which without talking about this broader topic of neurodiversity, right,
Speaker 4: so starting at the basic building blocks for that. You know,
Speaker 4: this is something I talk a lot about with students
Speaker 4: and things like that because you know, a lot of
Speaker 4: people are interested in learning about this.
Speaker 3: But basically, you know, if you think.
Speaker 4: About the world, I think one of the things that
Speaker 4: makes it so beautiful is that we're all different from
Speaker 4: each other. You know, we have people different races, different backgrounds,
Speaker 4: different heights, ages, things like that. Neurodiversity applies that idea
Speaker 4: to our brains. It's kind of a framework looking at
Speaker 4: you know, different types of brains. So you have neurotypical people.
Speaker 4: These are people whose brains function in what's seen is
Speaker 4: like a typical way. Society was kind of built around
Speaker 4: their needs. You know, the way that they process the
Speaker 4: world and respond to things and behave is seen as
Speaker 4: like typical behaviors within like a culture or the world
Speaker 4: around us. People whose brains process things a little diff
Speaker 4: diferently might behave a little differently from those norms. They're
Speaker 4: called neurodivergent. So this is a pretty broad term broad people.
Speaker 4: I think, you know, like you were saying, a lot
Speaker 4: of people can define it differently, So sometimes you might
Speaker 4: see it used to define really only like developmental conditions
Speaker 4: like autism and ADHD especially you know, I'm an autism researcher.
Speaker 4: I have ADHD, so those are kind of in my framework.
Speaker 4: But you know, if you think about it, people with
Speaker 4: things like mental health conditions, mental illness that also affects
Speaker 4: how you experience the world, how you process things. You know,
Speaker 4: people with anxiety or depression or schizophrenia, and they're often
Speaker 4: judged for their behaviors and in need of like extra
Speaker 4: supports and things like that. And then you can even
Speaker 4: go as far as talking about people with acquired things
Speaker 4: like people who have had strokes, things like that. You know,
Speaker 4: that affects the brain, that affects how you experience the
Speaker 4: world around you and respond. So I think that I'm
Speaker 4: not trying to gate keep you know, neurodiversity, neurodivergence. I
Speaker 4: think that you know, if a person is experiencing these difficulties,
Speaker 4: they're kind of common across these different types of conditions.
Speaker 4: Then like, I think it's fine to label yourself as neurodivergent.
Speaker 1: Right on. I like what you're saying. What I'm what
Speaker 1: I'm hearing you say, at least certainly in the beginning
Speaker 1: of that is it's less about differants and more about
Speaker 1: the same sort of diversity that is part of human diversity, right,
Speaker 1: Like in a way it when you think of neurodiversity,
Speaker 1: it's like biodiversity, is this is a function of the
Speaker 1: human condition. There is diversity, right, So of course there
Speaker 1: is neurodiversity, right.
Speaker 4: I just want to say one thing, you know, I
Speaker 4: think that a lot of times people will take that
Speaker 4: diversity thing and kind of run with it and say, oh,
Speaker 4: it's not a disability, you know, then everyone's a little
Speaker 4: autistic or things like that. But it also can be
Speaker 4: very disabling because of the social structures that we have
Speaker 4: in our world.
Speaker 1: What are some ways in which it might actually be
Speaker 1: a strength, like in school or in work, or in
Speaker 1: a relationship or something.
Speaker 4: One of the big things is because you can think
Speaker 4: differently because you're neurodivergent.
Speaker 3: You can be really creative oftentimes.
Speaker 4: So a lot of neurodivergent people find that they really
Speaker 4: excel at creative things like the arts or being organized
Speaker 4: and following a routine and they can be really good
Speaker 4: at things like programming because of.
Speaker 1: That, is there sort of a dynamic of trade off
Speaker 1: involved in that. You know, if there's you know, a
Speaker 1: hyper focus and a hyper utility in one area, does
Speaker 1: that ever mean there's a deficit somewhere else.
Speaker 4: I'd say that one of the biggest problems with hyper
Speaker 4: focus is that it can you know, it doesn't necessarily
Speaker 4: create deficits, but it can create problems in social relationships.
Speaker 4: If you're you know, really excited and enthusiastic about something,
Speaker 4: you're really into it, you want to talk about it
Speaker 4: a lot to someone. I'm someone who's a big talker,
Speaker 4: but they're just not interested. You know, they're like very bored,
Speaker 4: and you know they're like, oh my gosh, this person
Speaker 4: is still talking about this. You know, that can make
Speaker 4: get difficult to form relationships, and that's often a response
Speaker 4: that neurodivergent people often receive. Another thing is if you're
Speaker 4: you know, two into something, it can mean you know,
Speaker 4: you have an aspect of perfectionism. So maybe you're you know,
Speaker 4: really detail oriented. You're like, I want to find all
Speaker 4: the research about this area for this project and get
Speaker 4: it perfect but then it's hard to meet deadlines and
Speaker 4: things like that.
Speaker 1: Oh yeah, I can relate to that. I mean, I
Speaker 1: live off gride in a house halfway up a mountain.
Speaker 1: You know. Uh, you know I I am. I am
Speaker 1: an introverts introvert, you know, and it does feel at times.
Speaker 1: It's not that I don't prefer to be around people,
Speaker 1: it's that I cannot. You know that there are times
Speaker 1: where we're functioning around people would be not really an
Speaker 1: option almost you know, it's hard to describe, but I
Speaker 1: feel like, you know what I'm talking about.
Speaker 4: I do, and you know, I think this is really
Speaker 4: common for neurodivergent people. So it's something you know, they
Speaker 4: call it autistic burnout for autism, but a lot of
Speaker 4: it's because I don't know, maybe you can relate to this,
Speaker 4: or maybe people at home can relate to this. It's like,
Speaker 4: when you're interacting with people, you can't always be fully yourself, right.
Speaker 4: Maybe you can think of a situation where you've had
Speaker 4: to kind of perform for people, like you're meeting a
Speaker 4: partner's parents for the first time, or you're at an interview,
Speaker 4: or you're guest on a podcast, so you know, you
Speaker 4: feel like you have to be your best version of yourself.
Speaker 4: Neurodivergent people feel like that pretty much, like all the
Speaker 4: time and all of their interactions.
Speaker 3: They're taught to like hide who they are. It's called masking.
Speaker 1: Yeah, tell me about masking.
Speaker 3: Yeah.
Speaker 4: So it's kind of like a sometimes conscious, sometimes just
Speaker 4: automatic response to a lot of the stigma and discrimination
Speaker 4: and social challenges that neurodivergent, especially autistic people face.
Speaker 3: So they might you know.
Speaker 4: Make an effort to se debstrate, change the tone and
Speaker 4: volume of their voice. They might have a script that
Speaker 4: they follow in conversations to make it.
Speaker 3: More comfortable for them.
Speaker 4: You know, they're basically altering their social kind of abilities
Speaker 4: and social performance to better fit in and gain acceptance.
Speaker 4: Like I said, it can be completely non conscious, though,
Speaker 4: but it can lead to a lot of challenges, right.
Speaker 4: It's exhausting, you know, not being able to be yourself
Speaker 4: around people.
Speaker 1: Oh my goodness, I mean neurotypical neurodivergent. I think everyone
Speaker 1: can relate to the weight of that feeling, you know.
Speaker 3: Yeah, exactly Why.
Speaker 1: Does it seem like diagnoses are rising so fast? Is
Speaker 1: it because that it is more common or is it
Speaker 1: because there's more focus on it.
Speaker 4: We do see that, you know, diagnoses are rising in
Speaker 4: large part. You know this is really because we've gotten
Speaker 4: much better at diagnosing people. So I think we've gotten
Speaker 4: better at detecting autism earlier, so they can do it
Speaker 4: like two to three years of age pretty reliably now,
Speaker 4: and we're also going to better at diagnosing it in
Speaker 4: populations that you know, don't fit the kind of standard
Speaker 4: stereotypical model. So like what like it was frequently white males,
Speaker 4: like little boys, there used to be a four to
Speaker 4: one gender ratio, and then autistic people of color.
Speaker 3: A lot of people of color have.
Speaker 4: Been misdiagnosed as having like behavioral conditions first and then
Speaker 4: they later go on to get an autism diagnosis. They've
Speaker 4: also made some changes around the diagnosis of autism, so
Speaker 4: there used to be separate conditions. Like maybe you've heard
Speaker 4: of Asperger syndrome that's now under the umbrella of autism,
Speaker 4: but until twenty thirteen, it was a separate diagnosis.
Speaker 1: Tell me more about why girls in particular and people
Speaker 1: of color so often get missed in their diagnosis until
Speaker 1: later in life. What's that about.
Speaker 4: Yeah, so a lot of research has shown that can
Speaker 4: really a lot of can be attributed to stigma, just
Speaker 4: both kind of stereotypes about what autism looks like, and
Speaker 4: then also some bias and providers.
Speaker 1: What biases are you talking about?
Speaker 4: Specifically, there's a bias about like black families, So they
Speaker 4: were making judgments on family structures, like maybe both parents
Speaker 4: are working and you know, the kids being taken care
Speaker 4: of in daycare or things like that, or they're not
Speaker 4: in like a traditional preschool things like that, or you know,
Speaker 4: the provider kind of making judgments about behaviors that might
Speaker 4: be typical for black children versus white children.
Speaker 3: There was another study where they kind of, you know,
Speaker 3: it wasn't.
Speaker 4: Actual kids, but they gave a description of like behaviors
Speaker 4: that were atypical, and they asked students to like identify
Speaker 4: a diagnosis. When they labeled the kid is white, the
Speaker 4: students were more likely to say that kid was autistic
Speaker 4: versus if the student or if the kid was labeled
Speaker 4: as black.
Speaker 3: Students usually attributed it to.
Speaker 4: Like it's called oppositional defiant disorder or like behavioral conditions.
Speaker 1: What is oppositional defiant disorder?
Speaker 4: Yeah, so that's a disorder that's diagnosed often in childhood
Speaker 4: and it's really you know, kind of having these defiant behaviors.
Speaker 4: So it's you know, kind of doing not what you're told,
Speaker 4: or these externalizing, acting out types of behaviors. So it's
Speaker 4: like kids who might be very resistant in nature, or
Speaker 4: kids who might have hitting and behaviors like that.
Speaker 1: So I want to be clear. So this this paper
Speaker 1: determined or found that later in life, someone who might
Speaker 1: have been dismissed as having you know, oppositional defiance disorder
Speaker 1: actually met the criteria for autism.
Speaker 4: Yes, there have been several studies that have shown that,
Speaker 4: you know, black children are more likely to have a
Speaker 4: more diagnoses before reaching the autism diagnosis. That's kind of
Speaker 4: their final diagnosis, more time to reach an autism diagnosis,
Speaker 4: so they're diagnosed at a later age, and then you know,
Speaker 4: more misdiagnoses at first, so things like ADHD or behavioral difficulties.
Speaker 4: That does sound like bias, Yeah, exactly, So that's kind
Speaker 4: of why we talk about that. For girls, it can
Speaker 4: be a little more complicated. And you know, again this
Speaker 4: can also relate to people of color and stuff. We
Speaker 4: think that girls might mask more so you know, maybe
Speaker 4: they're able to fly under the radar. Yeah, so that
Speaker 4: can be a thing. Maybe you know, doctors aren't as
Speaker 4: good at recognizing when someone's masking. That's often also the
Speaker 4: case with like black autistic people. You know, their top
Speaker 4: two mask and conceal their behaviors to protect themselves.
Speaker 3: So that can make it harder.
Speaker 4: You know, on top of these biases, you know, just
Speaker 4: some of these differences in what a behavior might look
Speaker 4: like in these assessments.
Speaker 1: I wonder if young girls are sort of asked to
Speaker 1: mask anyway, so they might be they might be good maskers.
Speaker 4: Yeah, And you know, when we look at autistic girls,
Speaker 4: we do see, like, first of all, girls are kind
Speaker 4: of socialized to play with toys like dolls and stuff
Speaker 4: like that, and those are some of the tools we
Speaker 4: use in the like autism diagnostic assessment that seems like
Speaker 4: gold standard, it's called the ADOS. So you know, maybe
Speaker 4: they're more likely to be interested in those social toys
Speaker 4: or another study showed that, you know, autistic girls often
Speaker 4: have interests that are like more typical, but they're just
Speaker 4: really intense in nature, whereas autistic boys might be more
Speaker 4: interested in kind of more obscure types of things interesting.
Speaker 1: Do do Queer and autistic identities overlap in similar ways,
Speaker 1: you know that that are meaningful for belonging, support and
Speaker 1: everything else.
Speaker 4: Yeah, so this unfortunately is an area that's like very
Speaker 4: much pretty new in research. There wasn't a lot of
Speaker 4: focus on LGBTQ plus autistic people. You know, they were
Speaker 4: kind of just like I said, autism research was very
Speaker 4: like homogenous for a while. So I think one thing
Speaker 4: that's really interesting that's come out of it is that
Speaker 4: a lot more autistic people are transgender or non binary
Speaker 4: compared to the general population. And yeah, so even you know,
Speaker 4: within people who I've worked with in my study that
Speaker 4: you know, I don't aim to recruit for that, but
Speaker 4: in my dissutation, like I want to say, like a
Speaker 4: close to a third of people identified as non binary.
Speaker 4: And there's a theory that maybe autistic people you know,
Speaker 4: don't perceive these gender norms in the same way because
Speaker 4: you know, of their differences in thinking, you know, it
Speaker 4: might be something like that. You know, we haven't really
Speaker 4: I think the research is just kind of getting started
Speaker 4: in it and trying to figure this out. But yeah,
Speaker 4: a lot of autistic people do identify as trends or
Speaker 4: non binary.
Speaker 1: That is I would love to read about that that
Speaker 1: is really interesting research. So they're thinking perhaps they don't
Speaker 1: perceive gender in the same way and then also don't
Speaker 1: apply that perception to themselves.
Speaker 4: I think we find a similar thing for you, like
Speaker 4: being a sexual or a romantic. That's also higher prevalence
Speaker 4: foreign eurodivergent people, so you know, maybe they also you know,
Speaker 4: it could be a brain thing. It could be kind
Speaker 4: of a combination of like brain and like socialization. There's
Speaker 4: not enough research really to say what the cause of
Speaker 4: this is. We're just you know, seeing this consistent pattern
Speaker 4: of you know, different ways of thinking about things like
Speaker 4: gender and sexuality and autistic people.
Speaker 1: You said asexual and a romantic. What is the distinction
Speaker 1: between those two.
Speaker 4: So when we think about a sexuality, that's really referring
Speaker 4: to sexual desires, so you know, it's not about sexual behaviors.
Speaker 4: Some asexual people aren't sexually attracted to people, you know,
Speaker 4: they they don't form those sexual attractions. Some people call
Speaker 4: themselves like demisexual, so that means that they only form
Speaker 4: you know, these again sexual attractions to certain people, like
Speaker 4: once they've known them a little better. In terms of
Speaker 4: a romantic that's again that kind of like attachment behavior.
Speaker 4: So when you're in a romantic relationship. I think the
Speaker 4: big way to distinguish this is, you know, you can
Speaker 4: of like casual hookups that would be like sexuality, sexual behaviors,
Speaker 4: sexual attraction, whereas like a romantic relationship that would be
Speaker 4: you know, that romanticism. You know, you can have a relationship,
Speaker 4: a very successful relationship with someone that's romantic where you
Speaker 4: don't engage in sex or sexual behaviors for whatever reason,
Speaker 4: just like you can have sex without that romantic attachment.
Speaker 1: Yes, I was about to ask because that was possible
Speaker 1: asking for a friend, of course, But what is what
Speaker 1: is the double empathy problem? This is something that I
Speaker 1: hear a lot about in this conversation.
Speaker 3: When we look at research.
Speaker 4: You know, there are a lot of studies looking at
Speaker 4: interactions between autistic and non autistic people and comparing them
Speaker 4: to interactions between you know, just two autistic people or
Speaker 4: two non autistic people.
Speaker 3: And interestingly, a lot.
Speaker 4: Of this research shows that, you know, when you have
Speaker 4: two autistic people, they don't have a lot of these.
Speaker 3: Difficulties in their interactions.
Speaker 4: They can understand each other better, you know, understand what
Speaker 4: they're saying, what they're expressing, and they get along a
Speaker 4: little better, and these interactions, you know, they rate them
Speaker 4: pretty positively.
Speaker 3: If autistic people just had.
Speaker 4: Broad social deficits, you wouldn't expect that, right, You'd expect
Speaker 4: two autistic people to you know, have a really poor interaction,
Speaker 4: and that's not what we're seeing in research. Many times,
Speaker 4: these two autistic people get along, you know, just as
Speaker 4: well as two non autistic people and can communicate just
Speaker 4: as effectively. So the double empathy problem is really saying
Speaker 4: that it's not just autistic people having trouble understanding and
Speaker 4: empathizing with non autistic people.
Speaker 3: It's a two sided thing.
Speaker 4: You know, non autistic people also have trouble you know,
Speaker 4: understanding and interpreting autistic communication.
Speaker 1: Right, So how can we do that? How can we
Speaker 1: better interpret and understand the autistic community.
Speaker 4: I think the biggest thing is just getting to know
Speaker 4: and kind of understand autistic people around you. So we
Speaker 4: have some research and we've looked at how people kind
Speaker 4: of perceive autistic people, like the.
Speaker 3: Stereotypes I have.
Speaker 4: We call it, like first impressions would show a ten
Speaker 4: second video of autistic people. You know, sometimes we don't
Speaker 4: even say that they're autistic. We ask people, what do
Speaker 4: you think of this person, like, would you hang out
Speaker 4: with them? Those types of things, And we find that
Speaker 4: people who have more knowledge about autism and also have
Speaker 4: you know, more firsthand experience with autistic people, both of
Speaker 4: those things are associated with writing autistic people better. So
Speaker 4: I think just you know, being able to you know,
Speaker 4: whether you have autistic friends or you know, you follow
Speaker 4: people who are autistic online, you can learn to understand
Speaker 4: them just like you can, you know, learn to understand
Speaker 4: how your friend from a different culture might express themselves differently.
Speaker 4: So I think that that's social contact, and you know,
Speaker 4: interacting with and learning from and listening to autistic people
Speaker 4: is a really important component of that.
Speaker 1: Yeah, that's what I found in my lived experience. And
Speaker 1: I have some autistic friends, you know, I think we
Speaker 1: all do, and that's what I found. It's just like, oh,
Speaker 1: it's just a slightly different code. I get it, you know. Yeah,
Speaker 1: and listening as been big a big part of that. Yeah,
Speaker 1: So why do you think people still assume that autism
Speaker 1: means lack of empathy?
Speaker 4: One thing that I found was really common was that
Speaker 4: people often learned about autism from you know, like TV
Speaker 4: shows and things like that. And I think If you
Speaker 4: think about autistic characters that are represented, it's often like
Speaker 4: a very small range of different people. You know, there's
Speaker 4: much more diversity and actual autistic people, so you often
Speaker 4: see this kind of like Asperger's phenotype, where it's.
Speaker 3: Like a white guy who's like.
Speaker 4: Really socially awkward but like really smart and talented. So
Speaker 4: you know, common ones are like Sheldon from The Big
Speaker 4: Bang Theory, or the guy and the Good Doctor, or
Speaker 4: you can see that savant type of thing where people
Speaker 4: really struggle with the social connection, like rain Man, which
Speaker 4: is a really it's been actually really harmful stereotype for
Speaker 4: many autistic people to overcome.
Speaker 3: So I think that's one of the problems.
Speaker 4: You know, autistic people have often been portrayed as like
Speaker 4: aloof and cold, when in reality, many autistic people avoid
Speaker 4: interactions because they've faced so much discrimination and bullying and
Speaker 4: things like that and have had so many negative experiences,
Speaker 4: so they might withdraw a little bit be hesitant to
Speaker 4: form some of these interactions, but it doesn't mean they
Speaker 4: don't want friends, right in that.
Speaker 1: And I'm sure that just you know, creates more masking
Speaker 1: and more anxiety, and it just creates that cycle back
Speaker 1: and forth because of the double empathy problem going over
Speaker 1: around and around. Do you think the stigma is shrinking
Speaker 1: or is it just kind of morphing into subtler forms.
Speaker 4: I think that especially recently, we've had a lot of
Speaker 4: efforts to increase autism awareness and that's been really effective.
Speaker 4: So a lot of people know what autism is at
Speaker 4: least on a very basic level, but we certainly have
Speaker 4: a ways to go. There have been especially many very
Speaker 4: recent dialogues about autism that are very dangerous and harmful,
Speaker 4: you know, saying things like that autistic people can never
Speaker 4: do like all of these things, you know, like they
Speaker 4: can never play baseball, they can never have a meaningful life.
Speaker 3: Ah.
Speaker 4: That's very stigmatizing and it's just like a vast over generalization.
Speaker 4: And it's also dangerous because it kind of says that
Speaker 4: a person's value is tied to their abilities, which I
Speaker 4: think is a really harmful notion. So it's something we
Speaker 4: see a lot too. But I mean the term for
Speaker 4: it is ableism, you know, discrimination based on ability, and
Speaker 4: that's still really common. We see it in the workplace,
Speaker 4: we see it in romantic relationships, friendships. One of the
Speaker 4: biggest things we find consistently in our relationship is that
Speaker 4: non autistic people are really reluctant to form relationships with
Speaker 4: autistic people. You know, they have a much reduced interest
Speaker 4: in that compared to you know, friendships with people.
Speaker 3: With other conditions.
Speaker 1: Why do you think that is?
Speaker 4: I think part of it, you know, is, you know,
Speaker 4: again these kind of misinterpretations of autistic communication. Oftentimes people
Speaker 4: might interpret an autistic person as being disinterested or awkward
Speaker 4: or things like that, and they're less interested in.
Speaker 3: Forming friends with them because of that.
Speaker 4: One interesting thing is that we only really see that
Speaker 4: for non autistic people. If I show videos of autistic
Speaker 4: people to other autistic people, they'll still rate them as
Speaker 4: awkward things like that, but they don't have that reduced
Speaker 4: social interest, which suggests that you know, neurodivergent or especially
Speaker 4: autistic people might not use that, might not put as
Speaker 4: much weight on that when they're forming friends. It's like
Speaker 4: I can be friends with someone who's awkward or things
Speaker 4: like that. You know, that's not a barrier for us,
Speaker 4: whereas it might be a big barrier for a lot
Speaker 4: of you know, neurotypical people.
Speaker 1: Yeah, a lot of it is about you know, seeing
Speaker 1: past your assumption of the cue that you're reading.
Speaker 3: You know.
Speaker 1: I remember I was dating someone who had ADHD, and
Speaker 1: for a while, I was like, this person is just
Speaker 1: being very rude, you know, and I was misinterpreting a
Speaker 1: lot of stuff and I was like, huh. And then
Speaker 1: and then I figured out what was going on, and
Speaker 1: we talked and we communicated and it was cool, you know,
Speaker 1: But but that was on me, you know, I was
Speaker 1: I was making an assumption there.
Speaker 2: You know.
Speaker 3: That's a fantastic way of putting it.
Speaker 4: You know, I think a lot of this research has
Speaker 4: come out showing you know, for my dissertation, I interviewed
Speaker 4: autistic people about their social experiences, and one thing that
Speaker 4: really came out of it was that people were very
Speaker 4: frequently misinterpreted. So autistic women said that people often said
Speaker 4: that they had like resting bitch face and thought that
Speaker 4: they were really angry and things like that all the time.
Speaker 4: You know, Black autistic people said that they felt like
Speaker 4: they had to be really conscious of their behaviors so
Speaker 4: they weren't interpreted as aggressive or you know, lazier a
Speaker 4: lot of these stereotypes. And then just in addition to that,
Speaker 4: you know, a lot of autistic people just felt like
Speaker 4: people even who were close to them, didn't understand them,
Speaker 4: you know, their motives, their intentions.
Speaker 1: One thing you said that really struck me. It was
Speaker 1: this masking around policing, you know, because you know, you
Speaker 1: don't want your behavior to be misinterpreted. You don't want
Speaker 1: you don't want to have a misinterpreted neurodivergent behavior compounding
Speaker 1: a bias in that moment. You know. That does sound
Speaker 1: particularly fraud So a lot of this sounds like it's on,
Speaker 1: it's on. Or the double empathy problem, right, which I
Speaker 1: think is really fascinating, means that both sides have to try,
Speaker 1: you know, and uh, and how can we accommodate and
Speaker 1: even advocate without alienating.
Speaker 4: Yeah, so I think that changes are needed, you know,
Speaker 4: both on an individual level. You know, I've talked a
Speaker 4: lot about increasing our understanding autistic ways of communication, reducing
Speaker 4: our stigma towards autism, so being more accepting and accommodating,
Speaker 4: But I also think we need some structural changes to
Speaker 4: help autistic people.
Speaker 3: Right.
Speaker 4: So one thing that's really helpful is like increased flexibility,
Speaker 4: so you know, being being more flexible with your friends
Speaker 4: if you know, maybe they're not feeling a social interaction.
Speaker 4: Maybe they're not feeling like going out, maybe they're autistic
Speaker 4: or neurodivergent, they're just really burnt out. They'd rather stay
Speaker 4: in or just like having some time to themselves.
Speaker 3: You know.
Speaker 4: I think oftentimes we get labeled as flaky for canceling,
Speaker 4: and you know, it can be tough, but you know,
Speaker 4: having that flexibility. I also think just communicating your expectations socially,
Speaker 4: so you know, knowing, you know, kind of laying out
Speaker 4: being direct about what you're expecting of someone. Like we
Speaker 4: had like a seminar here and we were kind of
Speaker 4: talking about like norms social norms, and we're writing them out,
Speaker 4: and we were saying, like how many of these are
Speaker 4: actually necessary in a social interaction, And we realized like
Speaker 4: very few of them were actually necessary, but they were
Speaker 4: often things that are used to kind of stigmatize.
Speaker 3: Or exclude neurodivergent people.
Speaker 4: Like eye contact is a good one, Like, you know,
Speaker 4: it can be helpful for non autistic neurotypical people to
Speaker 4: like read emotions from someone's eyes, but is that really necessary.
Speaker 4: You know, listen to the words they're saying in any cases,
Speaker 4: that will tell.
Speaker 3: You exactly what you need to know. About how they're feeling.
Speaker 1: Ask them what would you say to a parent who
Speaker 1: who's wondering how to prepare their child, their autistic child
Speaker 1: to enter a world that often confuses diversity for disorder.
Speaker 4: I think that this is a really tough thing for
Speaker 4: a lot of parents, especially because you know, autism is
Speaker 4: a spectrum, and you know, some people's kids can have
Speaker 4: really high support needs where you know, they might require
Speaker 4: around the round the clock type of help with you know,
Speaker 4: daily living and different types of skills, a lot more support,
Speaker 4: whereas you know, some people's kids may achieve independence and
Speaker 4: need less of that support. So things can look very
Speaker 4: different for different parents of different autistic people, just like
Speaker 4: they can look, you know, different for parents of neurotypical people.
Speaker 4: Right that, With that in mind, I think they're like
Speaker 4: three things that are really important for helping to prepare
Speaker 4: your autistic child for the world, and that's acceptance, advocacy,
Speaker 4: and love. So what I mean by acceptance is, you know,
Speaker 4: accepting your child for who they are, especially who they
Speaker 4: are now, not.
Speaker 3: Who you hope they'll be in the future.
Speaker 4: You know, I think parents can pretty commonly expect things
Speaker 4: of their kids or hope for things of their kids.
Speaker 4: But you know, I think just appreciating who they are.
Speaker 3: Now in the moment.
Speaker 4: You know, they have value their your kids, so just
Speaker 4: you know, accepting them for who they are now, kind
Speaker 4: of regardless again of that ability level or you know,
Speaker 4: challenges they might face and things like that. Advocacy is
Speaker 4: also really important. So many parents have to advocate for
Speaker 4: their kid kind of throughout their life in school, you know,
Speaker 4: getting them the supports they need. There's something called an
Speaker 4: IEP in school that's really helpful for many disabled kids. Also,
Speaker 4: things like you know, pushing your doctor to you know
Speaker 4: get a certain support like therapy or something, or even
Speaker 4: just getting that initial autism diagnosis if your kid has
Speaker 4: the ability, teaching them to advocate for themselves, right, you
Speaker 4: know that kind of thing. And then finally, I think
Speaker 4: love is pretty self explanatory, right, But what I mean
Speaker 4: by that is just like giving your kid a space
Speaker 4: to know that they belong, they're valued, they're accepted. So
Speaker 4: as an ero divergent kid, like this was really helpful
Speaker 4: for me. I was a weird kid, Like I got
Speaker 4: obsessed with Matt Damon.
Speaker 3: For like three years. I'm someways doing He's a.
Speaker 1: Great accurate and it's like he was a nice guy
Speaker 1: from Boston. He wrote Goodwill Hunting when he was younger
Speaker 1: than you.
Speaker 4: You don't have to tell me, like I was obsessed
Speaker 4: with him to the point that I was like actively
Speaker 4: bullied for this, Like I was a weird kid. I'd say, yeah,
Speaker 4: but my parents were just like whatever. And the point
Speaker 4: is like I was weird as a kid, and not
Speaker 4: in like a really cute way, like oftentimes in a
Speaker 4: way that got me picked on or people thought I
Speaker 4: was like genuinely weird, but I never felt that way
Speaker 4: with my parents.
Speaker 3: I'm sorry, and it's right, especially with other kids, because I'll.
Speaker 1: Tell you just being myself here, Yeah, being bullied, I
Speaker 1: always say, you know, being bullied when I was young.
Speaker 1: It's difficult for me to think of anything that was
Speaker 1: more formative in my life, and it still shapes my
Speaker 1: perceptions to this day. You know, I am still aware
Speaker 1: of the way in which I was fired in that
Speaker 1: particular crucible. You know, it's still it's had a profound impact,
Speaker 1: I think on anyone who's experienced it, you know, And
Speaker 1: you were really Matt Damon, I wanted to be a mime.
Speaker 4: Oh wow, yeah, you're you're a performer. You know, you
Speaker 4: became a performer. So I think it worked out in.
Speaker 1: The end, you know, Yeah, I guess I was asking
Speaker 1: for it in a way.
Speaker 4: I was like the kid who corrected the teacher and like,
Speaker 4: you know, that doesn't make you a lot of friends,
Speaker 4: or like reminding the teacher like you forgot to give
Speaker 4: us homework like that, I'll.
Speaker 1: Get your bullied. DESI that'll get you bullied. Yeah. Yeah, wow,
Speaker 1: that's that's strong coffee. Yeah, talk to me a little
Speaker 1: about neurodivergence and emergent technologies. Now, we're all relating through
Speaker 1: screens all the time, right You and I are relating
Speaker 1: through that right now. And how do all these screens
Speaker 1: factor in? You know, is is it helping? Is it helpful?
Speaker 1: Is it hurtful? Like what's up?
Speaker 4: Yeah, So this whole issue of social media and technology
Speaker 4: can be really interesting for autistic people. So, you know,
Speaker 4: in my dissertation, like I said, I interviewed autistic people
Speaker 4: about their social experiences and one thing that came out,
Speaker 4: especially for black autistic people and autistic women, was the.
Speaker 3: Internet was like really powerful for them.
Speaker 4: So that's where most of their friends were online, you know,
Speaker 4: people on like Twitter, or you know, I had people
Speaker 4: who were like I found people who are interested in
Speaker 4: k POMP like me. It's like I've been a really
Speaker 4: good tool for a lot of people to you know,
Speaker 4: find people who are similar to them, maybe other neurodivergent people,
Speaker 4: other people with overlapping interests, and there's a lot less
Speaker 4: social pressure than like a face to face interaction. So
Speaker 4: we did a study here at UMD with kids and
Speaker 4: many of the kids said like, oh, I met like
Speaker 4: friends online through like this game I played, and you know,
Speaker 4: I don't really have friends in person.
Speaker 3: That said, it can also open up some trouble for
Speaker 3: neurodivergent people.
Speaker 4: So cyber bullying is something that can be really common
Speaker 4: for neurodivergent people. I think, like especially kids who are
Speaker 4: in school. You know, they can have videos spread around
Speaker 4: them making fun of them. When I was in high school,
Speaker 4: there was a Facebook group that was called like this
Speaker 4: kid has Asperger syndrome, and like a bunch of people
Speaker 4: were joining it, and that's.
Speaker 3: Really messed up, like why would you do that?
Speaker 4: But you know, that is a really common thing. Many
Speaker 4: neurodivergent people get bullied. I had someone who was in
Speaker 4: my dissertation who said, like they used four chan a lot,
Speaker 4: and like obviously they get bullied all the time on there.
Speaker 4: There's a very like aggressiven and on that website. So
Speaker 4: I do think it can be both. I think it
Speaker 4: also is tough because for many autistic people, those relationships
Speaker 4: that they have online, they'd like them to expand into
Speaker 4: something more. They'd like to have that face to face
Speaker 4: you know, interaction and connection, but they can't, you know,
Speaker 4: for whatever reasons. It can sometimes be a barrier and
Speaker 4: be a little harder. You know, they still have these
Speaker 4: unmet social needs. So I think it can be both
Speaker 4: a benefit and a challenge. I'll also just add a
Speaker 4: couple more like quick points.
Speaker 1: Yeah please.
Speaker 4: Two benefits outside of relationships for these kind of online interactions.
Speaker 3: Are a you know, you get more flexibility.
Speaker 4: You could go to school online or you know, work virtually.
Speaker 4: It does help for like accommodations for people you know,
Speaker 4: maybe you just like can't go in one day or you.
Speaker 3: Have a communication barrier.
Speaker 4: And then the other thing is like text to speech
Speaker 4: programs and assistive communications. So many autistic people don't speak
Speaker 4: with words, but they're able to communicate through like an
Speaker 4: iPad or something like that. So I think technology has
Speaker 4: been like both really great, but it can also you know,
Speaker 4: present some dangers.
Speaker 1: What about the future, where do you think this is going?
Speaker 1: Do you have hope? You seem like a very hopeful person.
Speaker 1: It seems like we're gonna we're going to learn to
Speaker 1: accommodate a little bit more. What do you what do
Speaker 1: you think?
Speaker 4: I like to think that, you know, the universe is
Speaker 4: shifting towards you know, this balance, this acceptance for you know, everyone,
Speaker 4: We're seeing over time we are becoming more accepting of differences.
Speaker 4: I think that with the way that the world is now,
Speaker 4: it's so global, you know, you have to be accommodating
Speaker 4: of people who are different from you and accepting the things,
Speaker 4: whether it's people from different cultures, different backgrounds, or you know,
Speaker 4: people with different brains. So I'm really hopeful towards that,
Speaker 4: you know, I already just I've been in autism research
Speaker 4: for I guess like almost ten years now, and I've
Speaker 4: already seen a big change, you know, not just within
Speaker 4: you know, the field in general, but within my own
Speaker 4: work and my own understanding, my own interactions with autistic
Speaker 4: collaborators and students and you know, even participants who I'm
Speaker 4: talking to, and every person who I talk to, I
Speaker 4: walk away from that conversation having learned something. So I
Speaker 4: think that's really cool. And I really just believe in
Speaker 4: the best in people. So I really do think that
Speaker 4: it's going to get better. You know, I've seen it
Speaker 4: getting better for a lot of autistic people I know.
Speaker 4: And yeah, I know that a lot of them, you know,
Speaker 4: they say it's not great now, but like they also
Speaker 4: have hope for the future. And you know, I hope
Speaker 4: that we can kind of shift our understanding of autism
Speaker 4: to be more accepting because regardless of a person's ability level,
Speaker 4: things like that, if we reduce stigma, we can make
Speaker 4: their life a little better.
Speaker 1: Right, fantastic. I love talking to an optimist. DESI thank
Speaker 1: you so much for stopping by the window and talking
Speaker 1: to us. This was really fascinating. I could talk to
Speaker 1: you for hours and I really learned a lot today,
Speaker 1: So you're great.
Speaker 3: Thank you for having me.
Speaker 4: This has been one of the coolest things I've ever done,
Speaker 4: and it's been so nice talking to you.
Speaker 1: Yeah, you're well them anytime. All right, have a wonderful day.
Speaker 3: You too, Thank you.
Speaker 1: Okay, bye bye bye. All right, that was exceptionally informative.
Speaker 1: I learned a lot, how about you? Yeah right, okay,
Speaker 1: just a few things that I wrote down. Neurodiversity is
Speaker 1: human diversity, right. I know. When I usually think of
Speaker 1: the word diversity, I think of like culture and language
Speaker 1: and even like food. But of course that applies to
Speaker 1: our brains too. That makes sense. Difference isn't necessarily deficit.
Speaker 1: There are, in fact circumstances in which things that make
Speaker 1: us different are also the things that make us strong.
Speaker 1: And the last thing I wrote is she said acceptance, advocacy,
Speaker 1: and love are things that a neurodivergent child might need.
Speaker 1: And it sounds to me like those are the things
Speaker 1: that all human beings need, we just need them differently. Yeah,
Speaker 1: let's go outside. Neurodiversity is human diversity. That one resonates
Speaker 1: with me because we're all unique, all right? And if
Speaker 1: we're all unique, doesn't that mean being unique is normal?
Speaker 1: Could it be that difference itself is the most human
Speaker 1: part of us? I don't know, what do you think? Yeah? Yeah, well,
Speaker 1: thanks for coming by. Means a lot. It's always great
Speaker 1: to see you. Really, you look great. Alive with Steve
Speaker 1: Burns is a Lemonada media original. If you haven't subscribed
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