B (7:38)

Follow.

A (7:39)

You might be right on Apple Podcasts, Spotify or wherever you get your podcasts and tell them I sent you. I started being interested in the issue or concept of neurodiversity after a listener got in touch with me telling me I used the phrase wrong. I have to admit I was thinking of it more of oh, just a garden variety or not too threatening concept like let's not stigmatize those who have something like ADHD or maybe a mild form of autism. I realize those phrases that I just said would probably offend one of my. Let us call it panel participants, Devin Price. Devin is a social psychologist and professor at Loyola University of Chicago School of Continuing and Professional Studies. He is the author of Laziness Does Not Exist and Unmasking Autism, the Power of Embracing Our Hidden Neurodiversity. Also joining me is Freddie DeBoer. He is the author of the Cult of Smart How Our Broken Education System Perpetuates Social Injustice and the forthcoming no justice, no Peace, no Progress. Title Subject to Change. I should also mention for the purposes of this conversation that Freddie has written such articles as why Do Neurodiversity Activists Claim Suffering Is Beautiful? And the People Hurt by the It's a Beautiful Journey School of Mental Health Are the People with Mental Disorders. He's also written about his severe bipolar dis, his institutionalization. Devin, welcome to the gist.

C (9:07)

Hi. Yeah, thanks for having me.

A (9:08)

And Freddie, welcome to the gist.

B (9:10)

Hi, thanks for having me.

A (9:11)

So, Devin, I want to start with you, and I think maybe a couple questions even before we get to Freddie, what's your definition of neurodiversity? And tell me how that definition advances the experience of all of us, the neurodiverse and the neurotypical.

C (9:26)

Yeah, so it's kind of always shifting, I think. But neurodiversity for me just means anyone who kind of diverges from the societal standard of how people are supposed to think, act, and feel. And when you hear that, if you say, well, isn't that everyone? I think that's kind of partially the point that everyone experiences emotions, thoughts, and behavior a little bit differently. Everyone's kind of punished by having really narrow societal standards of how people are supposed to comport themselves. And so the term was originally coined to apply to autistic people, ADHDers, people with dyslexia. And over the years has been kind of broadened to apply to really anyone with any mental illness or anybody who could be stigmatized as having mental illness, because these things can be pretty fuzzy, actually.

A (10:21)

So do you not believe there is a valid category of mental illness?

C (10:24)

It's just such a blanket statement, mental illness? I mean, like, it depends on what you're asking with that question.

A (10:31)

Do you think there's such a thing as schizophrenia?

C (10:34)

Yeah, absolutely. I mean, all of these categories.

A (10:37)

And I would say. And is that a mental illness worthy of treatment?

C (10:40)

Yeah, yeah, of course. And I think, you know, ADHD is real, even though we also have a lot more kind of debates and conversations about how much is, like, where we draw the line for adhd, affected by technology, affected by culture, affected by educational standards. You know, so there's both fuzziness and there is clear cut instances of suffering and people who want medication and benefit from medication. And that's where kind of these conversations get so messy, I think, because there are a lot of cases where what's traditionally been called the medical model really does apply to people's lives and they see and experience mental illness as a medical condition that needs medical treatment. And then there are people who experience it more under what's called the social model and see it as more that their suffering comes from being stigmatized. And there isn't always a clear cut line between those two groups either.

A (11:30)

Yes, but I really want to draw you out on this, Devin, because so far you're articulating to me what seems very sensible. I would characterize it as we perhaps over stigmatize and over diagnose mild cases. But you have written the concept of neurodiversity and the process of psychiatric diagnosis are fundamentally incompatible with each other. Either you actually believe autism, adhd, et cetera are neutral sources of diversity deserving of acceptance in society, or you think they are disorders that must be diagnosed, but it makes no sense to try and claim both those things simultaneously. That's what I, that's why I wanted to have you on. You seem to take the idea to its logical conclusion. It strikes me as. Can you talk about what you're stating? It was in, I think a tweet originally.

C (12:18)

Yeah, yeah. So that tweet is pointing out that there is a lot of inconsistency in how. And it's really responding to a lot of people in the autism and ADHD self advocacy worlds online who people have a really tangled up notion of neurodiversity. Even people in our community where there are a lot of people who on one hand they'll say they kind of embrace the idea of neurodiversity, that we can think of these conditions as neutral sources of human difference. But then they'll still like really just as someone who's semi public face of this topic, they'll come to me asking for advice on how to get diagnosed and how to kind of, you know, prove that they really are within this community. When a lot of my writing is really clear that in autism in particular, our diagnostic tools are not good, especially for marginalized populations and adults. And so if you really believe that being autistic is just a neutral source of human diversity and you are an adult and a diagnosis wouldn't really Unlock too many benefits anyway, which happens to be the case with autism in adults. Why would you be pursuing a diagnosis, why would you be trying to treat it as a pathology when that hasn't been for these kinds of people that are reaching out to me, their life experience of it. So, yeah, so this is something that is even in the neurodiversity kind of advocacy world and online there are people who say that they're advocates for that point of view who are still also really still thinking under kind of a medical or pathology model and seeing their disability or their mental illness as something to be diagnosed. And a lot of people somehow kind of think both of those things at the same time.

A (13:57)

Freddie, is. Is Devin saying much that you disagree with?

B (13:59)

I think actually we agree on a bunch of things. I mean, my essential first point is always to say that, like, look, I want people to do what works for them. And there's people out there who identify as neurodiverse and who don't want to see their particular condition as something pathological, as an illness. If that works for them, if that is genuinely helping them in their life emotionally, in terms of the management of their day to day life, then God bless them, that's fine. My beef with neurodiversity is that I think that for many people that approach is not working, but it has become a very socially common kind of a thing in certain venues, particularly in social media and particularly among the youth. And my own personal story of 20 years of managing a psychotic disorder, for me, identifying with the illness has always been bad for me, whereas what has worked for me is seeing it as no different than psoriasis or irritable bowel syndrome or any other chronic disorder that has to be managed rather than cured. For me, the more that I see my mental illness as something that is a medical problem that I have to deal with and that will crop up again and again, but which is not fundamental or core to my being or my identity, that's been better for me in terms of staying on meds, seeing my doctor working the program. Because the problem with these things becoming identities is that for one thing, you then therefore have less incentive to get well, right? So if I look at, for example, the proliferation of young people performing their mental illnesses on TikTok, if you become viral as someone with dissociative identity disorder or borderline personality disorder, et cetera, and that is sort of your online identity, your incentive is now to manage it worse rather than better, right? Because the more that you sort of portray that disorder, the More that the symptoms are becoming more and more outsized and more and more visible the more viral you become. And so I do, I worry for these people especially because eventually you do get tired of the, of the illness. It might seem like these things are quite energizing to young people when they have a diagnosis now and they can sort of use that to sort of understand their problems. But when you get to a certain age, and I'm a man of a certain age at 41, it stops being sexy. And if you're holding onto it as being core to your personality or core to your identity, I think it's going to be harder for you to just say, okay, look, I got this thing. It's no good, it doesn't help me very much, but I have to deal with it in management. What are the ways that I can best manage it so I can get about with the business of doing life. And unfortunately, if you think that your identity is all you are, your illness identity, your neurodiverse identity, that's gonna get in the way of that effort.

A (17:03)

Devin, do you think Freddie is erecting a straw man there?

C (17:07)

No. I've definitely seen the kind of dynamic that he's talking about here. The thing that's interesting is I've seen it both in people who approach mental illness as identity and people who kind of talk about their mental illness as this, like third party that's inside of them. So you'll see this a lot, for example, in young people online talking about adhd, they'll say, you know, well, I wanted to do this, but ADHD wouldn't let me. Or, you know, sometimes people will, you know, borderline or bipolar in that way, where they're kind of personifying the mental illness as this thing that they have no control over. So that seems to be very psychologically unhealthy for people as well. And we do have some, some research in the literature kind of pointing to when people see mental illness as this thing that they're stuck with that's kind of added on to their life that seems to be very. Have negative effects for people's experience of stigma, self esteem, medication adherence, if that's the kind of program that they're on. Some of these things Freddie was just talking about, can it happen with identifying and integrating mental illness into your self concept too, the way he's talking about? I think so. But I think there's a distinction between identifying as, I have this illness, I have this mental illness, that's a big part of how I see myself and having it be a more absorbed part of your full identity. And that's something that I've noticed. Just even myself as someone who found out I was autistic, you know, in my late 20s, the first few years, you see everything through that lens because it's this big revelation of, oh, I do this because I'm autistic. I do this because I have adhd. Over time, I think a lot of people and people are really vocal and really annoying online when they're going through that phase. But I think a lot of people, over time they move past it and do begin to see it as this is something that I deal with in both good and bad or completely neutral, whatever ways. And it just becomes part of your complete self concept a little bit more, I think.

A (19:08)

I'll be back in a minute with more of Freddie and Devin and their debate on neurodivergence. We're back with Freddy DeBoer, Devin Price, and let's get right back to the debate on the word, the term, the concept of neurodivergent. Freddie said if it works for them, if it works for the individual to treat their mental illness as a disability that should be treated or cured of. I think Freddie has done that with his mental illness and he encourages others to do so. But by your writing, Dr. Price, I don't think you do well with autism.

C (19:53)

It really doesn't apply. I think there's a big difference between bipolar one, especially where I think most people, a lot of people benefit from medication and are pretty vocal about what a difference in that makes in their life circumstances, versus autism, where there is no medication for autism? It's a really pervasive disability that affects sensory issues, how you socialize, how you think. And most of us in the autism self advocacy world, we really do see it as a core part of our identities because it affects us so pervasively. Does that mean that our community doesn't have toxic positivity where like there's some pressure to pretend that we always love being autistic? We definitely have that, that's definitely a thing. But I think most of us, there's no pursuit for any kind of therapy that's going to make us non autistic because the only therapy like that that ever existed, applied behavioral analysis, was really just literally spraying kids with water if they acted weird. It was just behavioral conditioning to force kids to look more normal. There's no really sign that we'll ever be able to cure autism. And I think most people in our community see that as a good thing. Because it is so multifaceted. But again, I think this is just a really clear cut example of where the social view of disability and the medical view of disability, they devour, diverge for very different situations.

B (21:18)

Yeah, and I think that, like, to me, that maybe is part of my frustration sometimes with neurodiversity is because it's aggregating together things that are so different. So for listeners who don't know, Asperger's syndrome is no longer a DSM category in the Diagnostic and Statistical Manual of Mental Illness because, well, among other things, Asperger was a Nazi. But they now recognize three levels of autism, Level one, two and three. And at the level one level where people are able to live generally ordinary lives, along with a set of personality and behavioral factors that are common to autism. I completely agree. I don't think anyone should be looking for a cure. And I think that we should definitely expand our perception of what is socially desirable behavior so that people feel less stigma. However, of course, things are very different for let's say a level three autistic person who I know some kids, knew some kids like this when I used to work in a public school, who are the kind of kids who are completely non verbal, so they can't communicate with verbal language. Often they will have self injury behavior, self harming behaviors, repetitively hitting their heads or biting their fingers, etc. Etc. Who can't control their own bathroom functions, etc. And so that's even within the sphere of autism. Those are two very different kind of lives where you can understand why the parents of a level 3 autistic child might want to undertake some behavioral therapy to keep them from trying to bite off their fingers or whatever. Whereas I agree that it would be offensive to try to stamp the autism out of a level one autistic person, but even go beyond that, of course, neurodiversity, depending on who you talk to, entails a whole lot of other things like adhd, like dyslexia, like schizophrenia, like bipolar disorder. And so I think part of my frustration is it's often not clear to me what the value is in aggregating together so many profoundly different conditions that have such different realities in terms of whether or not we should want to cure anything. And I will say that it can sometimes happen that people are rather aggressive about the idea that neurodivergent conditions are things that should not try to be cured, because I would love very much if they would come up with a pill tomorrow that I could take once. So I don't have to take eight pills a day anymore for the rest of my life. And so I just think that, you know, I think one of the things the Internet does is it flattens, and it tends to force everybody into the same vocabulary. And so, to me, I understand the desire for people to feel like part of a broader community, especially when they've faced stigma. I just don't know what neurodiversity, as, as a big umbrella term is really doing for anyone in a positive way.

A (24:23)

Then, at least to me, it prompts the question, okay, what's the harm? If everyone really is only talking about level one, where you gentlemen have no disagreement? What's the harm? And I don't know, Devin, I don't want to put words in your mouth, but maybe you look at level three autism as a totally different thing. Do you?

C (24:42)

No, but I think Freddie makes some really salient points that have played out even in my own writing and work and kind of journey of, like, kind of coming into an autistic identity over the years. Because when I first found out I was autistic, I would write a lot of these very raw, raw. Like, now I realize that this is why I'm good at this thing. Autism has given me these superpowers, which is this really, like, oversimplified narrative. But I think it's a stage of the process. I think it's like when somebody comes out of the closet as gay, and then they can't shut up about it because it's like, I've been repressing this side of myself, and now I'm proud of it, and I'm gonna be obnoxious about it for a little while. But one time I wrote something like that on Tumblr. So that gives you a sense of the timing. And somebody retweeted it and was like, this is stupid. I hate being autistic. How can you say that? We all need to view it this way. And I found out that this is someone who's a good friend of mine. His name's Taylor. He's a nonverbal, intellectually disabled, autistic kid in his teens who he is really vocal about the fact that he wishes he wasn't autistic. He wishes that he, you know, if he could take a pill that would make him not autistic, he would. And he is someone who I have seen firsthand get harassed, get sent death threats, get doxxed by autistic people who have the very rah, rah. We're proud of being autistic. And you aren't allowed to say this kind of point of view. And that's really distressing to me. So I do know that that's a real thing. And I've also seen online the flip side, where if you say anything that's critical of the idea of ADHD or talk about how is there a cultural component to how many people are distracted right now, on the flip side of that, when you're saying that, like you get your mentions on Twitter or whatever, flooded with people saying, I have this horrible disability, there's no way it's social. Like, how can you say this? So I think there's actually kind of both people pushing really hard to de. Pathologize these things at all costs. And there are people who are still very invested in always seeing it as this biological pathology with no social component. So the discourse is a mess, for sure.

A (26:43)

Yeah, I mean, I think the discourse is. I think maybe we're overemphasizing the role of Twitter, which has its own pathologies in real life. There was Freddie, you wrote about this incident where at Harvard, some acclaimed experts were discussing in panel discussions treatment for autism, I think it was. And that was. That idea was shut down by members of the. Members who of the community define themselves as neurodiverse under the idea that you can't talk about this or debate this as a disability. So that's not just. Does it work for you? What does the definition work for? That's some people not allowing a differing definition to work for other people.

B (27:28)

So in the actual sort of capsule definition of what the panel was going to be, that was not mentioned that I saw. I think part of what was frustrating about that incident is precisely that we didn't really know what was going to be in the panel because the panel hadn't happened yet. And it was basically talking in broad strokes about, okay, here's some ways in which we can help the severely autistic. And I'm just generally a guy who just thinks it's better to hear people out and listen to what they have to say than to shut it down preemptively. But again, like, to me, the salient element of that is that the woman who spearheaded shutting it down is someone who was autistic, who is so high functioning that she was flourishing at Harvard. Right. Where, you know, I used to work in a public school district in a program, special ed program. And there were a number of kids who were nonverbal, level three. Now we would call them autistic. And their parents were very exhausted. People who needed access to better resources, more government support for trying to raise these kids that they had to provide with an immense amount of care. And to me, what I would ask of people like the Harvard students who protested the event is to remember that it can simultaneously be true that there's nothing wrong with you and we don't want you to change, but there are people who share the same broadcast identity, sort of category of autistic, which, you know, can vary dramatically from person to person, that we should try to remember that there are people within that world who want to be helped in some sense, medically. And I think the fixation on the term disability in and of itself can be unhelpful because, you know, I think that it's easy to say that, you know, someone who keeps smashing his fingers into a table over and over again repetitively because of his severe autism, I'm sure no one would. Would object to calling that a disability. But again, we are looking at these. At this spectrum and saying, like, this is the sort of thing that we can put the same consistent labels on. And I wish I had a more a hotter take than just sometimes things are different rather than the same. But I do think that this whole discourse, I think, really breaks down in this way. And, you know, I can say as a psychotic patient, right, I'm very often lumped in with schizophrenia or schizoaffective disorder. And. But the experience is very, very different, right? So I think one thing that I often bring up to people who don't know much about these. These disabilities. So there's this concept called. Which is a super shishi term for the fact of when people have a mental disorder but are unable to see the fact that they have a mental disorder. This is, in fact, extremely common with schizophrenia. A large majority of schizophrenics are even often, when they're medicated, are unable to grasp the extent to which they have a mental illness or disability. However, a majority of bipolar patients don't suffer in that way. In other words, I've had four or five psychotic episodes in my life. During those episodes, I have been aware that something is badly wrong, but I can't simply stop it from happening. And that's a good example of where we have this sort of generalized cultural sort of idea about what it means to be mentally ill that often is not actually universal at all. And so I guess I'm here today just advocating for pulling things apart and not aggregating things that are not the same. And just to quickly say one thing. That I always tell the young people who have recently been diagnosed and I've heard from a lot of them in the last five years is sooner or later you still got to pay the rent. You know what I'm saying? At the bottom of all of this stuff, even if you're someone who really wants to celebrate your diagnosis, identify with the disorder, treat it as your identity, put it first in your sort of sense of self, put it on your Tinder bio, whatever, that's all cool. Sooner or later, right, you have to still sort of do the work of life. Right. I think, I think Devin's analogy to coming out as gay is a good one. Right. It's the sense of which this major thing happens to you and it's better afterwards and you now know something about yourself in a way that you didn't before and that's cool. But like that doesn't mean you have to stop, you can stop paying the rent, right? Like sooner or later, like just the work of doing the day to day work of life comes back to you. And again, in my experience, just as one person thinking about my psychotic disorder as like psoriasis or IR syndrome or epilepsy, etc, that is the more useful mental frame.

C (32:15)

Yeah, yeah. I think the place where I really diverge is in seeing there can be value in us realizing we're part of a broader coalition that would benefit from a lot of the same gains in housing, in better Americans with Disabilities act protections because those are really hard to enforce. You know, anti discrimination or ensuring that spaces are accessible, pushing for greater health care access and mental health care access. I think those should be kind of the end goals of neurodiversity as an approach. And I do think we get lost in the weeds and the kind of focus on individual identity and celebrating it too much and just to kind of complexify some of the things that Freddie's talking about. And I would, and I know he's well aware of this distinction too, but high functioning versus low functioning, whether it's schizophrenia or psychotic disorder or whether it's autism, it's not a clear kind of categorical line. There are a lot of people who, let's say even in just with the autism example, people who can succeed at Harvard or hold down a job who need pretty regular assistance remembering to eat or keeping their houses clean or who can become non verbal temporarily. And there are people who, like my friend Taylor, who very, very severely disabled by whatever metric you would call it, you know, someone who self injures just to regulate his like stress levels. And this is still someone who was able to, through talking online and talking with his family, but mostly talking to him, persuade me that my own perspective on autism as a unilaterally positive thing was mistaken. And so I think a lot of times what we really need from neurodiversity if we're gonna actually be a community is we need to actually listen to and follow the lead of people like that. Because he's not incompetent, even though he is very intensely disabled and he has a different opinion of autism than many other really vocal autistics. He has competence, he has insight into his experience and knows what he wants and kind of feels and isn't usually listened to. And I think that's true of a lot of psychotic patients or people who have experienced psychosis. You know, it's not a clear line. And so it's not necessarily in my mind about dividing between the people for whom their disability isn't that big a deal. Maybe sometimes it's even a good thing and they can be proud of that identity and the people who are suffering more, it's definitely more of a spectrum. And we do need to listen way more as a community to the people who are on the more debilitated end of that spectrum. And I think that would logically lead to talking about how are we going to, as a society provide the services that people need when they have these disabilities? What are we going to do in terms of making education more accessible, making housing more accessible and those kinds of supports?

A (35:05)

Aren't the more disabled definitionally less able to participate in the conversation? I'm not even talking about the level three autistic people that are institutionalized, who Freddie was talking, talking about, but just your friend. I mean, he had to conquer a lot of technological hurdles that the rest of us wouldn't. And then when you also add on to that there are probably many in the self diagnosed AD HD or autistic community who might have very, very mild cases that maybe even a clinician would say, I don't even know if this qualifies. So to go back, if the idea is we have to listen to the most disabled, it's extra hard. It's hard to hear their voices, isn't it?

C (35:48)

Yeah, it's hard on both a systematic level and just on a real level of, you know, it takes more energy out of someone like Taylor to use the assistive communication device that he has. And yeah, and so that's been something that there's been a lot of internal critique even within the autistic self advocacy network, asan, which is kind of the largest autistic led advocacy group in the US There had to be a big push to really change who was in leadership in that organization to make sure that we had more nonverbal people in our leadership. I think this is an ongoing conversation because it is true that the people who get heard and privileged the most in these conversations tend to be the ones who can do a show like this, who can provide a sound bite, who can present in a certain way and without it being as exhausting for them. And yeah, yeah, so that's going to be something. We're going to always be pushing up against those issues because there's a real bias towards people like me and people who see their neurodivergence as a positive because they, on a social and maybe even medical level, are less disabled or less severely so.

A (36:59)

Devin Price is a social psychologist and professor at Loyola University of Chicago School of Continuing and Professional Studies. He's the author of Unmasking Autism, the Power of Embracing Our Hidden neurodiversity. And Freddie DeBoer is the author of the Cult of Smart How Our Broken Education System Perpetuates Social Injustice. He also has a very successful substack. Thank you both for joining me for this cup of coffee sprinkled with angel dust. Thank you, guys.

C (37:25)

Thanks.

B (37:26)

Thanks, Mike.

A (37:32)

And that's it for today's show. Cory War produces the Gist. Kathleen Sykes runs the Gist list, Ben Astaire is our booking producer and Jeff Craig runs our Socials. Michelle Pesca oversees it all benevolently and thanks for listening.