← Alive with Steve Burns
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- [00:02]
Desiree Jones
Lemonade.
- [00:18]
Steve Burns
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?
- [00:45]
Desiree Jones
Hmm?
- [00:46]
Jemma Spake
Mm.
- [00:48]
Desiree Jones
Mm.
- [00:50]
Steve Burns
I'm making tea. Do you want. You want tea? Okay.
- [00:54]
Jemma Spake
Um.
- [00:57]
Steve Burns
I'd say most of the time I consider myself to be a relatively normal person. But then I remember that I'm a 51 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. I ask because, you know, there's a lot of talk about neurodivergence lately, 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 Blue's Clues had a really profound impact on the autistic community, and I've always wanted to know why. And 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 also who gets to decide what's normal. What do you think? Huh?
- [02:37]
Jemma Spake
Huh?
- [02:38]
Steve Burns
Okay, let's go. Okay. All right. So Desiree 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, one brain degree wasn't enough. Then she went on to the University of Texas at Dallas for a master's in Applied cognition and neuroscience, followed by a PhD in Psychological Sciences. Some people collect Funko pops. Desiree collects diplomas. Apparently her research is about autism, stigma, and intersectionality. Basically all the ways in which society decides who's normal and who isn't. And in 2023, she landed on the Forbes 30 under 30 science, 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, how you doing today?
- [03:59]
Desiree Jones
Hi, Steve. I'm doing really great. I'm so glad that I could catch you.
- [04:03]
Steve Burns
I am so excited that you're here. You're so kind to join us. Now, do I call you Desiree or do I call you Desi?
- [04:10]
Desiree Jones
Yeah, I go by Desi usually. Especially with friends. And yeah, hopefully we can be friends.
- [04:14]
Steve Burns
Are we friends? We're friends.
- [04:15]
Desiree Jones
I hope so. I hope I can tell everyone I'm friends with you, Steve. I think, yeah, that would earn me a lot of credibility.
- [04:21]
Steve Burns
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 thank you for being here.
- [04:34]
Desiree Jones
Thank you.
- [04:35]
Steve Burns
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 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 sure everyone's talking about the same thing. So what do you think it is?
- [05:10]
Desiree Jones
Yeah, so I think you can't really talk about neurodivergence 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. But basically, you know, if you think 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 as, 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 differently might behave a little differently from those norms. They're called neurodivergent. So this is a pretty broad term for a lot of people, 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 would think things like mental health conditions, mental illness, that also affects 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 world around you and respond. So I think that I'm not trying to gatekeep, you know, neurodiversity and 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.
- [07:18]
Jemma Spake
Right on.
- [07:19]
Steve Burns
I like what you were saying. What I'm. What I'm hearing you say, at least in the, certainly in the beginning of that is it's less about difference and more about the same sort of diversity that is part of human diversity. Right. Like in, in a way it, when you think of neurodiversity, it's like biodiversity. This is, this is a function of the human condition. There is diversity. Right. So of course there is neurodiversity. Right.
- [07:49]
Desiree Jones
I do 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.
- [08:04]
Steve Burns
What are some ways in which it might actually be a strength, like in school or in work or in a relationship or something?
- [08:10]
Desiree Jones
One of the big things is because you can think differently because you're neurodivergent. You can be really creative oftentimes. 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 that.
- [08:28]
Steve Burns
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?
- [08:40]
Desiree Jones
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. And, you know, they're like, oh, my gosh, this person is still talking about this, you know, and that can make it difficult to form relationships. And that's often a response that neurodivergent people often receive. Another thing is if you're, you know, too 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 of the research about this area for this project and get it perfect. But then it's hard to meet deadlines and things like that.
- [09:28]
Steve Burns
Oh, yeah, I can relate to that. I mean, I. I live off grid in a house halfway up a mountain. You know, I am an introvert's introvert, you know, and it does feel at times, it's not that I don't prefer to be around people, it's that I cannot, you know, there are times where 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.
- [10:04]
Desiree Jones
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 to kind of perform for people. Like you're meeting a partner, parents for the first time, or you're at an interview or you're 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, they're taught to, like, hide who they are. It's called masking.
- [10:46]
Steve Burns
Yeah, tell me about masking.
- [10:48]
Desiree Jones
Yeah, 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. So they might, you know, make an effort to sit up straight, change the tone and volume of their voice. They might have, like, a script that they follow in conversations to make it more comfortable for them. 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.
- [11:28]
Steve Burns
Oh, my goodness. I mean, neurotypical, neurodivergent. I think everyone can relate to the weight of that feeling, you know?
- [11:38]
Desiree Jones
Yeah, exactly.
- [11:40]
Steve Burns
Why 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?
- [11:50]
Desiree Jones
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 at, like, 2 to 3 years of age pretty reliably. Now. We're also getting better at diagnosing it in populations that, you know, don't fit the kind of standard, stereotypical model.
- [12:13]
Steve Burns
So, like what?
- [12:14]
Desiree Jones
Like, it was frequently white males, like, little boys. There used to be a 4 to 1 gender ratio. And then autistic people of color, A lot of people of color have 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's syndrome. That's now under this umbrella of autism. But until 2013, it was a separate diagnosis.
- [12:47]
Steve Burns
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- [16:20]
Desiree Jones
Yeah, so a lot of research has shown that this can really, a lot of this can be attributed to stigma, just both kind of stereotypes about what autism looks like and then also some bias in providers.
- [16:32]
Steve Burns
What biases are you talking about?
- [16:33]
Desiree Jones
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 be typical for black children versus white children. There was another study where they kind of, you Know it wasn't 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 as white, the students were more likely to say that kid was autistic versus if the student or if the kid was labeled as black, Students usually attributed it to, like, it's called oppositional defiant disorder or, like, behavioral conditions.
- [17:22]
Steve Burns
What is oppositional defiance disorder?
- [17:26]
Desiree Jones
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.
- [17:48]
Steve Burns
So I want to be clear. So this paper determined or found that later in life, someone who might have been dismissed as having oppositional defiance disorder actually met the criteria for autism.
- [18:01]
Desiree Jones
Yes. There have been several studies that have shown that black children are more likely to have a more diagnoses before reaching the autism diagnosis as kind of their final diagnosis. More time to reach an autism diagnosis, so they're diagnosed at a later age, and then more misdiagnoses at first. So things like, like ADHD or behavioral difficulties.
- [18:22]
Steve Burns
That does sound like bias, for sure.
- [18:25]
Desiree Jones
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 good at recognizing when someone's masking. That's often also the case with, like, black autistic people. You know, they're taught to mask and conceal their behaviors to protect themselves. So that can make it harder. You know, on top of these biases, you know, just some of these differences in what a behavior might look like in these assessments.
- [19:02]
Steve Burns
I wonder if young girls are sort of asked to mask anyway, so they might be good maskers.
- [19:11]
Desiree Jones
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 diagnost assessment. That seems like the gold standard. It's called the adas. So, you know, maybe they're more likely to be interested in those social toys. 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.
- [19:47]
Steve Burns
Interesting. Do. Do queer and autistic identities overlap in similar ways? You know, that, that, that are meaningful for belonging, support, and everything else?
- [20:01]
Desiree Jones
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 that a lot more autistic people are transgender or non binary compared to the general population. Really? Yeah. So even, you know, within people who I've worked with in my studies, you know, I don't aim to recruit for that. But in my dissertation, 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, 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 trans or non binary.
- [21:02]
Steve Burns
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.
- [21:18]
Desiree Jones
I think we find a similar thing for music being asexual or aromant. That's also higher prevalence for neurodivergent 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 of, you know, different ways of thinking about things like gender and sexuality in autistic people.
- [21:46]
Steve Burns
You said asexual and aromantic. What is the distinction between those two?
- [21:51]
Desiree Jones
So when we think about asexuality, that's really referring to sexual desire. 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 once they've known them a little better in terms of aromantic, 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 think of like casual hookups that would be like sexuality, sexual behaviors, sexual attraction. Whereas like a romantic relationship, that would be, 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.
- [22:47]
Steve Burns
Yes. I was about to ask if that was possible. Asking for a friend, of course. But what is, what is the double empathy problem? This is something that, that I hear a lot about in this conversation.
- [23:01]
Desiree Jones
When we look at research. 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. And interestingly a lot of this research shows that, you know, when you have two autistic people, they don't have a lot of these difficulties in their interactions. They can understand each other better, you know, understand what they're saying, what they're expressing, and they get along a little better in these interactions. You know, they rate them pretty positively. If autistic people just had 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 empathizing with non autistic people. It's a two sided thing. You know, non autistic people also have trouble, you know, understanding and interpreting autistic communication.
- [24:03]
Jemma Spake
Right.
- [24:04]
Steve Burns
So how can we do that? How can we, how can we better interpret and understand the autistic community?
- [24:11]
Desiree Jones
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 stereotypes they have. We call it like first impressions which show a 10 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 rating autistic people better. So 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 social contact and, you know, interacting with and learning from and listening to autistic people is a really important component of that.
- [25:10]
Steve Burns
Yeah, that's what I found in my lived experience. 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, and listening has been big, a big part of that.
- [25:26]
Desiree Jones
Yeah.
- [25:27]
Steve Burns
So why do you think people still assume that autism means lack of empathy?
- [25:33]
Desiree Jones
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 in actual autistic people. So you often see this kind of like Asperger's phenotype, where it's like. Like a white guy who's, like, 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 in 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 a really harmful stereotype for many autistic people to overcome. So I think that's one of the problems. You know, autistic people have often been portrayed as, like, aloof and cold, when in reality, many autistic people avoid interactions because they face 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.
- [26:42]
Steve Burns
Right. And that. 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.
- [26:54]
Desiree Jones
Yep.
- [26:55]
Steve Burns
Do you think the stigma is shrinking or is it just kind of morphing into subtler forms?
- [27:00]
Desiree Jones
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. You know, saying things like that autistic people can never do, like, all of these things, you know, like never play baseball. They can never have a meaningful life. All that's very stigmatizing, and it's just like a vast overgeneralization. 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. And 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. We see it in romantic relationships, friendships. One of the biggest things we find consistently 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 with other conditions.
- [28:10]
Steve Burns
Why do you think that is?
- [28:12]
Desiree Jones
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 forming friends with them because of them. That 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, 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 of, you know, neurotypical people.
- [28:58]
Steve Burns
Yeah, a lot of it is about, you know, seeing past your assumption of the cue that you're reading. You know, I remember I. 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. Cool, you know, but, but that was on me, you know, I was, I was making an assumption there.
- [29:29]
Desiree Jones
You know, That's a fantastic way of putting it. 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. 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 they had to really conscious of their behaviors so they weren't interpreted as aggressive or, you know, lazy or 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.
- [30:13]
Steve Burns
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- [31:08]
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Chelsea Clinton
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- [33:17]
Steve Burns
One thing you said that really struck me 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 particularly fraught. 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, and how can we accommodate and even advocate without alienation?
- [34:05]
Desiree Jones
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 of 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. Right. 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 really burnt out, they'd rather stay in or just like, have some time to themselves. You know, 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, like norms, social norms, and we were writing them out 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 or exclude neurodivergent people. 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 many cases, that'll tell you exactly what you need to know about how they're feeling.
- [35:33]
Steve Burns
Asking what would you say to a parent who's wondering how to prepare their child, their autistic child, to enter a world that often confuses diversity for disorder?
- [35:49]
Desiree Jones
I think that this is a really tough thing for a lot of parents, especially because autism is a spectrum. And some people's kids can have really high support needs where they might require 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 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 there are, like, three things that are really important for helping to prepare your autistic child for the world, and that's acceptance, advocacy, and love. So what I mean by acceptance is, you know, accepting your child for who they are, especially who they are now, not who you hope they'll be in the future. 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 now in the moment, you know, they have value, they're 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 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 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 a neurodivergent kid, like, this was really helpful for me. I was a weird kid. Like, I got obsessed with Matt Damon for, like, three years. I was always doing.
- [37:53]
Steve Burns
Matt Damon's great. He's a great actor. He's a nice guy from Baltimore, Boston. He wrote Goodwill Hunting.
- [37:59]
Desiree Jones
Yeah.
- [38:00]
Steve Burns
When he was younger than you, I think.
- [38:03]
Desiree Jones
You don't have to tell me, like, I. 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. Oh, I'm sorry. And it's tough, right? Especially with other kids, because I'll tell you, Desi, I'm just being myself here.
- [38:30]
Steve Burns
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 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 into Matt Damon. I wanted to be a mime.
- [39:03]
Desiree Jones
Oh, wow.
- [39:05]
Steve Burns
Yeah.
- [39:08]
Desiree Jones
You became a performer. So I think it worked out in the end, you know.
- [39:12]
Steve Burns
Yeah, I guess I was asking for it in a way.
- [39:15]
Desiree Jones
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 teach, you forgot to give us homework.
- [39:25]
Steve Burns
That'll get you bullied, Desi. That'll get you bullied.
- [39:27]
Desiree Jones
Yeah.
- [39:28]
Steve Burns
Yeah. Wow, that's a. That's strong. Coffee?
- [39:32]
Desiree Jones
Yeah.
- [39:33]
Steve Burns
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 factor in? You know, is, is, is it helping? Is it helpful? Is it hurtful? Like, what's up?
- [39:54]
Desiree Jones
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 Internet was like really powerful for them. So that's where most of their friends were online. You know, people on like Twitter or, you know, I had people who found people who are interested in K pop like me. It's like 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 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. That said, it can also open up some trouble for neurodivergent people. So cyberbullying, 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's syndrome. And like a bunch of people were joining it. And that's really messed up. Like, why would you do that? But, you know, that is a really common thing. Many neurodivergent people get bullied. I had some, someone who was in my dissertation who said like, they used 4chan a lot and like, obviously they get bullied all the time on there. There's a very like aggressive environment on that website. So I do think it can be both. I think it also is tough because for many autistic people, those relationships 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 reason, 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.
- [41:53]
Steve Burns
Yeah, please.
- [41:54]
Desiree Jones
Two benefits outside of relationships for these kind of online interactions are a, you know, you get more flexibility. 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 have a communication barrier. And then the other thing is like text to speech programs and assistive communication. 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.
- [42:28]
Steve Burns
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 gonna learn to accommodate a little bit more. What do you. What do you think? Think?
- [42:38]
Desiree Jones
I like to think that, you know, the universe is shifting towards, you know, this balance 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, 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 10 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 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, and I. 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, 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. Right?
- [44:04]
Steve Burns
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.
- [44:19]
Desiree Jones
Thank you for having me. This has been one of the coolest things I've ever done, and it's been so nice talking to you.
- [44:25]
Steve Burns
Yeah, you're welcome. Anytime. All right. Have a wonderful day.
- [44:28]
Desiree Jones
You, too. Thank you.
- [44:29]
Steve Burns
You okay?
- [44:31]
Desiree Jones
Bye.
- [44:31]
Steve Burns
Bye, Desi. 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 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. There are, in fact, circumstances in which the 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. And it sounds to me like those are the things that all human beings need. Need. We just need them differently. Yeah. Let's go outside. Neurodiversity is human diversity. That one resonates with me. Because we're all unique, right? And if you. If we're all unique, doesn't that mean being unique is normal? Could it be that difference itself is the most human part of us? I don't know. What do you think? Yeah. Yeah. Well, thanks for coming by. It means a lot. It's always great to see you.
- [47:04]
Desiree Jones
Really.
- [47:05]
Steve Burns
You look great. Alive with Steve Burns is a Lemonade Media around original. If you haven't subscribed to Lemon on a 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 lemonade premium.com to subscribe on any other app or listen ad free on Amazon Music with your prime membership. That's lemonadapremium.com Alive is hosted by me, Steve Burns, and produced by Jeremy Slutskin. Our editor is Christopher Champion Morgan. Our associate producer is Akshas Tharabailu. Audio engineering by James Barber. Lemonada's SVP of weekly programming is Steve Nelson. Executive producers are Jessica Cordova Kramer, Stephanie Whittles, Wax and me. We'll see you next week. And you look great, by the way.
- [48:42]
Jemma Spake
Want to kick off your week feeling motivated and ready to take on whatever comes your way? I'm Jemma Spake. Host of the psychology of your Twitter 20s and I'd love for you to check out my new podcast, Mantra. Every Monday I'll bring you a new mantra to help you grow, level up and stay grounded no matter what life is throwing at you. We'll reshape your mindset, help you move through change and bring fresh focus to your goals. Plus, I'll incorporate actual life lessons from my life and share journal prompts and a weekly challenge related to each Mantra. We'll hold each other accountable because I'm going to be taking part too. If you are ready to grow and make life happen on your terms, tune into Mantra and let's take this journey together. Join me jemispeg every Monday and start your week with a new episode of Mantra. Wherever you get your podcasts.
- [49:41]
Sarah Amos
Famous Amos. It's a name that is synonymous with chocolate chip cookies.
- [49:45]
Jemma Spake
Cookies.
- [49:46]
Sarah Amos
He's also my dad.
- [49:48]
Steve Burns
I'm in a supermarket. I'm in convenience stores. I'm in department stores. That's what makes Amos famous.
- [49:55]
Sarah Amos
Wally Famous Amos. He opened the first ever chocolate chip cookie store 50 years ago. When he passed away last year, I set out to understand how he became one of the most famous Black men in America.
- [50:09]
Desiree Jones
I remember dad on the COVID of Time magazine.
- [50:13]
Steve Burns
The headline was the Hot New Rich.
- [50:15]
Sarah Amos
While also leaving his life and our family in chaos. What did you think when I first told you I was thinking of doing a podcast about our family?
- [50:26]
Steve Burns
How much collateral damage is it going to cost?
- [50:29]
Sarah Amos
From Vanity Fair, I'm Sarah Amos and this is Tough Cookie the Wally Famous Amos Story, available wherever you get your podcasts.