How Increased Autism Diagnoses Are Changing the Way We Think About Neurodiversity
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Playing May 2nd through June 8th. More info at berkeleyrep.org. From KQED. From KQED in San Francisco, I'm Alexis Madrigal. The way autism is viewed by the medical establishment, by the broader culture, and by people on the autism spectrum themselves has changed tremendously.

Long seen primarily as a condition that some boys and men experienced, far more girls are being diagnosed now as clinicians have begun to understand how symptoms present in women. Even as the Trump administration's Robert F. Kennedy Jr. portrays autism as a tragedy, the understanding and acceptance of neurodivergence are also rising. It's all coming up next, right after this news.

Welcome to Forum. I'm Alexis Madrigal. So much has changed in how our society understands autism spectrum disorder scientifically and socially that I want to just get right to our guests and have them lay out the new reality of this type of neurodivergence. We're joined this morning by Holden Thorpe, editor-in-chief of the

of the science family of journals. He authored a New York Times essay, Sorry, RFK, There Is No Autism Mystery. He was diagnosed with autism at 53. Welcome, Holden. Great to be here, Alexis. Thanks. We are also joined by Christine Wu Nordahl, who's a neuroscientist and professor in the Department of Psychiatry and Behavioral Sciences at UC Davis. She's the director of the Autism Phenome Project. Welcome, Christine. Thanks so much for having me.

So you're a neuroscientist who's been studying autism, Christine. It's a condition that's on a spectrum. Maybe you could just explain kind of the different levels and what they are and what that means. Sure. I mean, I've been in the field for about 20 years now. And

The most salient thing about autism is the heterogeneity of autism, that it truly is a spectrum. And there are individuals ranging from those with intellectual disabilities, sometimes profound intellectual disability, who are non-speaking and need 24-hour support, all the way up to individuals like perhaps

Holden, who has been provost and vice chancellor and, you know, a very, very successful career and everybody in between. And I think that that has been really challenging in terms of how we research and how we understand autism and how we support the autistic community. So what's the scientific advantage of grouping these folks together into one sort of spectrum?

Well, I think that what really holds everybody together are the diagnostic core features of autism, which are the social communication challenges and the repetitive restricted behaviors. That's what ties everybody together. And then there is this big spectrum. And so...

It is a challenge. And the Autism Phenome Project, which I've worked on for 20 years, was really designed to try to tackle that heterogeneity. We're trying to sort of parse out different subgroups within the autism spectrum that hang together perhaps more in a biological or behavioral way so that we can look at specific causes and features of these subgroups to then better target treatments and interventions and supports for these specific subgroups.

I mean, not to be too basic, but did it work? It is working. So it takes time. Science takes time. And we have identified several different subgroups. One that we're really interested in is individuals who have this, what we call a big brain form of autism. So individuals with what we call megalencephaly are really big brains at age three.

And we now understand after we followed them that they tend to have a poorer prognosis or higher rates of intellectual disability, need more supports. And if we can identify that at age three, we can then support them better as they grow up. So that's just one example of a subgroup that we've identified. So people may have heard this term and when they start to think about subgroups of people, they may have heard the term Asperger's. It has fallen out of favor. Why did that happen?

Well, Asperger's, there's a couple of reasons for that. And this is with the DSM-5. And, you know, it's interesting because in DSM-4, we sort of broke everybody apart and we had these different... This is this manual for psychiatrists. Yes, sorry. This is the diagnostic manual for psychiatrists. And we broke everything apart. And then in DSM-5, we lumped everything back together. And Asperger's was, I think, taken out of the diagnostic criteria program

the people who have, you know, would have been diagnosed with Asperger's still are diagnosed with autism. It was challenging because one of the differences in people with Asperger's was that they had to have

their language was not impaired when they were young. And in an adult, if you're trying to identify this, it's rather hard to go back and remember exactly what the language delays were when they were young. And so this is just one reason. That was how you differentiated Asperger's from autism. And it was difficult to do. And really, you know, sort of what was the point if people are still having the label of

autism. I do understand that Asperger's is an identity for some individuals. And now I think autism is an identity for some individuals. Really interesting. Let's bring in Holden here. I mean, Holden, you, you know, as Christine alluded to, you had a very successful career in science. Then you received a diagnosis of autism when you were 53. How did that come about?

Yeah, so I didn't really seek it out. I mean, I did seek some help, I guess, because I brought in a psychologist to help me, you know, do a 360 review when I was a provost, which, you know, a provost has way too many direct reports and many things to do. I want to be a better manager. That was kind of the impulse. That was it. Yeah. And she went around and talked to everybody.

And, you know, this has always been true that there have always been people who loved it, that I was so direct. And when they asked me to do something, I got right on fixing it or I asked them how they wanted it to come out and made sure they got what they wanted. And then there were always a few who didn't.

Kind of didn't get me or thought they couldn't communicate with me or they were trying to tell me something and I completely missed it. And so after she talked to everyone, she and it was, you know, based on the timeline you were just talking to Christine about.

It was only a few years after the DSM-5 merged Asperger's in with ASD. And so she said, a lot of people have suggested that maybe you have Asperger's. And that was the first time that I'd heard that. I think it's probably partly because it was a little less...

associated with stigma by then. So it was the kind of thing somebody would feel more comfortable saying than at a time in my past when I've had other kinds of evaluations. But she was a psychologist who was qualified to help me with this. And I said, so do you think that's true? And she said, yes, I think you're on the spectrum.

And I've had many evaluations and talked to many experts since then, because, you know, if you're the editor of science, you can kind of talk to any expert you want to. And so, you know, it was confirmed. It was a long time before I disclosed it, basically because for the same reasons that Christine was talking about, you know, in my earlier roles,

I had supervised many autism entities like the one that Christine is operating that were both on the sort of psychology and what we would call the neurodiversity side now and on more of the medical side where people are looking for ways to intervene for children who have much higher support needs. And I always sensed a lot of tension there.

And I didn't want my disclosure to be disrespectful to people along this spectrum. And as you're saying, why is a guy who's been able to do all these things talking about being autistic?

But over the years after I got my diagnosis, I mean, first I just started by telling people things like, listen, I'm really hard to read. Don't judge anything from my facial expressions. If you need something, tell me directly what it is. If you come to my office to complain about something,

Let me know if you actually want me to fix it or if you're just venting. And then eventually, I started getting up in front of groups. And I'm sure your listeners have noticed this. My vocal tone doesn't modulate very much. And I sometimes get that on my student evaluations. So then I started saying to my class things like, hey,

My vocal tone and my hand movements are kind of different, and that's because I'm on the spectrum. And then the students responded very positively to that. And then I met some people in the autistic self-advocacy world who all convinced me that there was a way to talk about this that wouldn't be disrespectful.

And that might actually help people. So that's what I've been doing for the last two years. And it's one of the best things I've ever done. I've met a whole community of people who have just blown me away with the level of inspiration that they can give.

Holden, thank you so much. Really wonderful statement there. Christine, I wonder if maybe you could talk a little bit about the tension that Holden alluded to there, you know, between, say, parents who have kids with really high support needs and maybe people in the autism community who, you know, don't view what they have as a, you know, as something to be overcome or a disease or disorder.

Yeah, I think this has evolved so much since when I came into the field, which is around 2006. And I think that the neurodiversity movement has really grown. And, you know, there's greater awareness, there's greater acceptance, there's much more talk about identity. And

And we've moved more to a social model of thinking about autism, right? That we don't need to change the person, we need to change the environment that they live in to better support them. However, there are individuals, and 40% of individuals diagnosed with autism in the U.S. have an intellectual disability. And there is this tension because I think that sometimes

families of those individuals, particularly those with what's called profound autism, people who need 24-hour support, can't oftentimes have very profound intellectual disability, those people maybe feel like their voices aren't being heard quite as much. And

I think that the research actually reflects this because those individuals are often not included in research studies. And I think that we're doing them a huge disservice by not including them. And I think this is where the tension sort of comes from.

We're talking about changing attitudes and even diagnoses towards the autism spectrum disorder, ASD, as you may have heard it called in this segment. We're joined by Christine Wu Nordahl, who's a neuroscientist and professor in the Department of Psychiatry and Behavioral Sciences

at UC Davis. She's also the director of the Autism Phenome Project. We're also joined by Holden Thorpe, who's editor in chief of the Science Family of Journals. He authored a New York Times essay, "Sorry, RFK, There Is No Autism Mystery." He was diagnosed with autism at 53.

We want to hear from you. You know, did you receive, have you received a late diagnosis of autism? How did it affect you? Would it open up for you? Are you a woman or a girl who did not get a diagnosis until later? We're going to talk about that in the upcoming segment. The number is 866-733-7333.

That's 866-733-6786. You can email forum at kqed.org or find us on social media, Blue Sky, Instagram, etc. We're KQED Forum. I'm Alexis Madrigal. Stay tuned for more.

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Welcome back to Forum. Alexis Madrigal here. We're talking about the changing attitudes towards autism spectrum disorder. Joined by Holden Thorpe, editor-in-chief of the Science Family of Journals, Christine Wu Nordahl, who is a neuroscientist and professor in the Department of Psychiatry and Behavioral Sciences at UC Davis.

Want to add another voice to the conversation, old friend Mary H.K. Choi, an editor and author of the novels Yolk, Emergency Contact, and Permanent Record. She wrote the cut article, What My Autism Diagnosis Finally Explained, which went viral. Mary, welcome. Hey, how's it going? Good, good. So good to have you. I, you know, we...

oftentimes think about autism even even now even as more women and girls have been diagnosed as something that Really affects boys and men did you at any point in your life before you got diagnosed think to yourself like oh Maybe I have autism or was this something that like wasn't even in the realm of possibility for you I mean that language, you know as far as just like I'm a baby clinician I will diagnose myself like that definitely was not within the realm of possibility. I think and

I think it was less formal and sadder where I was just like, oh, I'm really lonely. I'm like such a little alien. I'm on the outside. Everybody on the inside, you know, they know what's going on. They are completely dialed into each other. They all have instructions for how to be in this world and I don't. So that was kind of the vibe. And how did it end up actually coming about that you, you know, got diagnosed?

Well, I was in my 40s. It was during the writer's strike. I was doing what any healthy person with eyeballs was doing, which was I was just basically doom scrolling a lot. And I don't, I both like don't recommend this and I do, it's kind of none of my business, but I was on social media a lot. And

at one point i was having an argument with my partner and as they were leaving their parting shot was oh my god i swear you are either autistic or have like borderline personality and it was it was one of those things where i was just like oh you know mean and then it kind of ricocheted with all the scrolling i was doing and

On one hand I was just like, "Oh, well this is obviously some sort of self-fulfilling thing," or like, "The more you look for something, it's like the number 23 or whatever, you'll start seeing it." But then I had that sort of cold sense of realization. It's kind of like when you're in a swimming pool and the water just gets cold. And I was like, "Oh, okay."

And then from then on I was taking like online quizzes and things like that and I think one of the really interesting things about autism is that there is a lot of validity in like older people who self-identify and self-test and so I was able to find a lot of tests that are out there for free on a website called Embrace Autism. It is

run by Dr. Natalie Engelbrecht, and she is also autistic. And the tests are all there, and they just explain not only the qualities, but also your propensity for masking those qualities, which is particularly key, I think, in women and girls. And so that was the starting point. And then I was assessed after that. And then I did whatever what

what every gross writer does, and then I wrote about it. So yeah, that's what happened. I was like, "This is all copy." Yeah. Before we go to Christine on some of the kind of, you know, diagnoses and the way that this has played out in the scientific community, I mean, what did it do for you just as a person? Honestly, it was such a relief. I mean, there was definitely this huge layer of grief. Like, I started having so much compassion for all of the versions of myself over the years that had felt so...

you know, just like wrong and just like unable to adjust. And I started having really an understanding of the fact that the world as I was growing up was not designed to accommodate me. And so a lot of the struggles I was having interpersonally or in school or in jobs, like they weren't a moral issue anymore. And it kind of put me in a position of like,

you know, letting me off the hook a little bit because there was so much like fear and, you know, hypervigilism and this just like complete conviction that I would get things wrong and be misunderstood and misunderstand people all the time. So that sort of piece of it no longer being a moral issue, no longer being right and wrong was huge.

And then it was this piece in my relationship where I was like, "Oh, I'm not a jerk." Like, and that's real. I'm not saying that all autistics aren't jerks. That's definitely not mutually exclusive.

But I was like, there were all these signs by the time I was in my 40s that were, I was getting more and more beleaguered. And one of them was something as simple as like, I just wasn't invited to a lot of weddings. I mean, anyone who is invited to many weddings knows that this is like a gift in many ways. Like, you do save a lot of money. Like, you don't have to buy so many dresses. But like...

I was like, "That's weird." Right? Like, I was like, "People either don't know me or I don't know them." And so that was one thing. And then the other piece was that when my... I think the sort of like biggest sort of seismic event-sized thing is that when my dad died, I had been so... I was so inured to this idea that I would have to mask, like I would always have to sort of portray a version of something. And I became so flummoxed by how

much grief I was allowed to have. I was comparing myself to all the people in my life. You were trying to calculate it rather than feel it. Absolutely! And it was like, I'm not allowed to be sadder than my mom. So then if she was weeping, I'd be like, "It's her turn to weep." And I did have this, and similarly with my brother, I was just like, "He's the male child." You know, like, "He should be closer to my dad." So I'm not allowed to feel this way unless he's also feeling this way.

By then, in my 40s, I did have enough wherewithal to be like, "Hey, buddy, that's weird. There's a there there. What is this?" And so that had a lot to do with my inquiry as well.

Christine, let's talk about the rise in diagnoses among women and girls. I mean, you know, I've experienced this in my own family, and I'm curious, like, why you think it's happening now and what kind of new tools are available for clinicians or people working in this world?

This goes back to awareness, right? And so it is still true that more boys are diagnosed with autism than girls. And that ratio has stayed pretty consistent at three to four to one over, you know, the past 20 years.

But what's become much more apparent is that there are several reasons why there are fewer girls diagnosed with autism. And it's not that necessarily all of them don't have autism. So one big reason, just as Mary was alluding to, was that a lot of autistic girls can just fly under the radar. You know, there's a large field on what's called masking that she was talking about where girls...

you know, little girls perhaps are more, you know, they're people pleasers. They are perhaps gendered and more socially aware of things. And so I think that there are girls that definitely are just being underdiagnosed, missed. Their parents don't even realize it and bring them in for a diagnostic assessment because they're just so good at faking it, faking the social situations.

And one example I like to share about this that illustrates this really well is from a wonderful psychologist friend of mine, Summer Bishop at UCSF. And she talked about doing a diagnostic assessment in a six-year-old girl.

where the little girl came in and she seemed very socially adept. She complimented her outfit, she asked how she was doing, she seemed really great. And Summer was sort of wondering, why is this girl coming in to me for an assessment? It just so happened that this girl then she saw her again a couple days later

And then Summer understood the family's concerns because this little girl said exactly the same thing that she did the first time she met her. Like it was scripted. It was completely scripted. It was completely rehearsed. So if Summer had only seen her on that first day, she would have been like, fine, she's great. But then she saw her again and she realized what the problems were. So just like that, some girls, I think, can fly under the radar. Yeah.

We're talking about changing diagnoses and also attitudes around autism spectrum disorder, joined by Christine Wu Nordahl, who's a neuroscientist and professor at UC Davis, joined by Mary H.K. Choi, an editor and author of the novels Yolk, Emergency Contact, and Permanent Record, wrote the Cut article, What My Autism Diagnosis Finally Explained. And we've got Holden Thorpe, editor-in-chief of the Science Family of Journals, who also authored a New York Times essay about autism.

Let's bring in a caller here. Let's bring in, um, a Ren in Mountain View. Welcome. Oh, hi. Well, I'm so happy. Dog's happy too. Anyway. Yeah. So, um, just to key in a little bit of what a few folks have been mentioning with masking and, um,

just really advocating for oneself. So my son, my nine-year-old son has autism and he was only diagnosed last year, but yet there's really key social pragmatics. He is gifted. He's reading our college chemistry and my ecology books back from my master's and PhD. And he's just,

Amazing academically. However, there are these key social pragmatics issues, being able to communicate, work in groups, sort of, you know, these key social skills that are very important, as we all know, to function in life. And they do impact society.

his education because he would be doing great on all of the tests even if he didn't go to school. He'd go to a Spanish immersion school, public school. So long story short, my question is for all the speakers, knowing what you know now about yourself, how would you advocate for yourself

in elementary school and what recommendations would you give to we're trying to get him an individualized education plan and they've denied him and I'm

very much fighting for it to provide him the support, not necessarily academic support, even though he could benefit from accelerated learning, but more of the social pragmatic support. So what sort of goals or recommendations would you provide

to the team for, you know, let's just say for yourself, if you could advocate back and how would, how would that look like? Uh, around. Thank you so much, uh, for, for that story. Um,

Hold on, I actually want to take the personal perspective from you first. I imagine, just given your scientific career, that you were also a precocious young elementary school student and maybe also had some things with the social pragmatics, as Erin was describing them. What do you think would have really helped you as a kid?

Yeah, so I think, first of all, it sounds like he has a very similar pattern of mind. And the thing that I think made it so that

I was been able to do the things that I've done. And it's part of the reason why finding a way to give back along these lines has been so important to me because I feel like I was very fortunate in this way. First of all, I went to a small church.

parochial school where I went to school with the same 30 kids for nine years. And they were all so generous and accepting of my staring at the wall and going off on various tangents and things.

And so having them around made a huge difference for me. If I'd gone to a place where I was bullied more or didn't have that, I could have had a very different outcome. And I see young people who did. And I think the other thing that I don't know why I did this...

if it was intuitive or just lucky but all the partners that i've had in my life my best friend growing up my closest work associates my spouse they're all extroverts who can communicate with their face and their body and their vocal tone and can read social situations and i guess i was just always so in awe of their ability to do that that it attracted to me them to to me as friends and thank

Thankfully, they were interested in partnering with me. So the thing I tell folks is that if your partners are complementary to you, then that can be a really big help. Now, it's hard because...

There's a lot of kin selection that the experts on here can talk more about among autistic people. But I think for him to have a small number of very close friends who kind of get him but also compliment him could make a really big difference. Yeah.

Christine, how about you? I mean, I know that you also put together groups of kids as well, and it feels like that community support is really important. Yeah, so I...

What I've done in my research study, and this is specifically for autistic girls, is I started this group called NeuroTeens. And this came out of my research program because my research program focuses a lot on autistic females. And one of the parents asked me, she had a high school age daughter. She asked me, you know, do I know of any social support groups specifically for girls? Because her daughter was in high school.

And all of the autism groups or autistic people were boys. And boys and girls are just very different, socialized differently, different social ways that you behave in high school. And there weren't any. So I created this group called Autism with my lab and other team members. And all we did was really create a space for autistic girls and gender diverse, neurodivergent teens. And they came together and they found people

who worked kind of like them, right? It was in a lot of ways for a lot of these kids, it was the first time they came together in a group of people where everybody was like them. And it has just been the most heartwarming, wonderful thing for these teens, I think, because they found a community. And so I think going back to the question,

Being able to find a community, a few close friends, people that they can relate to, understand that they are not alone, that there are other people like them. I think that makes a big difference for anybody growing up. Mary, just as someone who has gone through your life, do you think it's been more helpful to be with people like you or with sort of complimentary folks, kind of like the two approaches we just got there?

You know what, I think that you can have both. Like, let's just go whole hog with that. No, because like, I definitely, like Holden was saying, like, I had like the friend and they were like my world. And that was amazing. And I've had this friend since I was four, and she remains my best friend. And like, that's just so precious. And she's like the keeper of like my time capsule. But I think there is something so, so heartening and safe about

to be able to like, you know, put the masks down in a room where you know that all of you

are like joined in this way, but you're all different from each other. You know, there's that adage of like, if you've met one person with autism, you've met one person with autism. And like, in that room, if I know that all of us have different special interests, but we're just as excited about the thing that we're excited about, we don't have to pretend to be like cool or chill about it. Like, I think that would be really fun. And I

And also incredible for self-esteem. Like, I think the thing that I got a lot when I was a kid is that I was just too intense. Like, I didn't know when the cues to, like, speak and not speak. Like, I just was really into stuff. And that was just not it in the 90s. So to have, like, a room full of sort of like-minded girls who are all excited or, like, you know, into things, I think that that would have...

just carried me so, so far in terms of like career or like even a hobby, like just everything.

You know, all of that instead of masking at all. Your high school Tumblr would have killed though. I'm saying, you know what I mean? It would have been like all mythology and all fashion. We've got a couple of comments from listeners. Susan writes in to say, you know, as a psychologist, I did assessments for autism in my years as a psychologist. I watched what is labeled as autism grow. This accounts for the increase in numbers. No more cases, just more pulled under this umbrella. Petra,

Pat writes, coincidentally, just this morning we were discussing a fellow from our past that was quite odd, and I described him as, quote, on the spectrum. I now realize from hearing your show that I was using this description quite pejoratively. I just want to say thanks for that, and I'll definitely not think of people that way again.

Seems good. Thanks, Pat. We're talking about changing attitudes, like Pat's, towards autism spectrum disorder. Joined by Mary H.K. Choi. She wrote the Cut article, What My Autism Diagnosis Finally Explained. She's a novelist, an editor, a writer. Also joined by Christine Wu Nordahl, neuroscientist and professor in the Department of Psychiatry and Behavioral Sciences at UC Davis.

also the director of the Autism Phenome Project. And we've got Holden Thorpe, editor-in-chief of the Science Family of Journals. He authored a New York Times essay, Sorry, RFK, There Is No Autism Mystery, and was diagnosed with autism at 53. We'll get to more of your calls and comments when we get back from the break. I'm Alexis Madrigal. Stay tuned.

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Welcome back to Forum. Alexis Madrigal here. We're talking about changing diagnostic criteria and attitudes towards autism spectrum disorder. Joined by Mary H.K. Choi, wrote the cut article, What My Autism Diagnosis Finally Explained. Christine Wu Nordahl, who's a professor at UC Davis, and Holden Thorpe, editor-in-chief of the Science Family of Journals. Let's bring in Felisa in Berkeley. Welcome.

Hi, thanks so much for taking my call. I've really enjoyed hearing everybody's perspective. And I'm calling to bring up, you know, some gender issue. I had a late diagnosis in my 40s, but I heard about Asperger's in my 20s when I was in graduate school. And I thought, oh, this is wonderful. This makes so much sense. And when I told my parents, they were horrified. It was definitely when they knew about autism. It was something awful, probably, that the mother did. And I said, no, no, no, this must make so much sense. And

You know, I'm trained as a scientist and I'm also trained as a musician. And one of the things those, both of those, uh,

disciplines give you is like a playbook, like literally here's how to do what you do and when you do it. And I realized in both of those fields, a lot of what I was doing was I'm emulating and imitating men. And actually you get really good. And it's part of masking, like imitating, what do other people, how do they hold their hands? You know, how do they, when do they pause? And when I had my neuropsych eval, one thing we talked about is that, you know, when you reach the end of the playbook, that's when you get in trouble.

Either you insult someone or they don't understand. And in particular, there's two points that I want to make. This idea of like this directness that can sometimes be interpreted as like a confidence or an intensification, some intensity that is just much less accepted from girls and from women.

then, you know, for men. And if you're emulating men, it gets very confusing. And I think what I would ask the panel in that context is, you know, my whole family turns out to be neurodiverse, including my children. And we've learned about things like dialectic behavior therapy and advocating for like needing some time or being away from the group and things like that, you know, kind of evidence-based things and therapies that the individual can do.

to be able to overcome this. And in particular, I'm really glad that Christine mentioned women and developing social groups for girls. And there is that kind of like, oh, okay, I'm among my people. I can just be me. And I don't have to sort of tamp down my intensity. And I always felt there's like an unfairness to it that, and if you are autistic, this idea of like, um,

fairness in black and white is really very strong and seeing the gray can be hard. And so when you see it's so unfair, I think it can be difficult. So maybe if the group can speak a little bit about like some evidence-based therapies that they know of, both for kids and for adults. Yeah. Christine, do you want to talk to that? And then Mary, I'll come to you on just sort of, you know, how the experience resonates.

Yeah, well, I, you know, there's so many things going through my mind as Felicia was talking about this. And, and one of the things I want to talk about is, you know, people have talked about masking and there is literature suggesting that autistic females do tend to mask more than men. And, you know, I would say that extends to non-autistic people as well. There's a whole level of masking and, and, and I won't go into that, but I do want to raise the, the,

awareness that with masking, although it can be very successful in fitting in in that social situation, it comes with a burden. And sometimes there's higher rates of co-occurring anxiety or depression. People talk about their social battery draining.

the need to recharge. And I think that we just have to have an awareness, particularly in autistic females or people who mask a lot, that this masking, although it can be seen as perceived as something successful, that there are often mental health concerns. And so wraparound supports for that, you know, there are cognitive behavioral treatments for anxiety that can be very effective for autistic individuals. And just recognizing the need for that extra support

I think is it will be helpful to all individuals. Yeah, Mary, I mean, one of the things I was really struck by reading your cut article is just how much work social life was slash is for you. Oh, yeah. I mean, the masking piece and the burnout piece is just like, you know, there's always a field of corn withering somewhere if you're tap dancing for your life. And

I just, you know, and to the caller's point, like, there is this intensity. Like, I would have to train myself to make eye contact because I wrote about it in the article. Like, it feels like putting all my fingers into someone's mouth or, like, having someone put all their fingers into my mouth. Like, eye contact is too much data. I do not like it. And so in training myself to do that, like...

sometimes the person will think I'm making like a weird overture or they'll be like, "Oh, you didn't blink. You must be a murderer." Like, there are so many ways in which this goes

really pear-shaped really quickly. And then on top of that, like, I have auditory processing issues that I... and, like, light issues, like, a lot of, like, environmental issues around my autism. And so already if I am talking to someone in a crowded room, it's taking so much effort. And if the lighting is specific, it's like, "Okay, then I'm wearing a really, really scratchy bodysuit talking to this person and..."

And that, by the end of the day, is just, I'm completely wiped. And there is also this other sort of pressure, this inter-general pressure where I'm Asian, I'm East Asian, I come from a collectivist society. There's gender cues, there's social cues, there's so many cues.

And so add that layer on top of like trying to translate for like a Western audience or whatever the thing that is happening. And, you know, usually by four or five, like I need a solid hour by myself or like,

12 minute nap or I will just completely lose it and I thought for so long that my depression and my anxiety was a separate thing and It's only within the past like however many years since being diagnosed that I'm like, oh, this is the epic handshake meme Like all of this goes together. Hmm It's also just so at least for me, you know thinking the way my own brain works are so beautiful to hear the kind of

rich description and kind of texture you're giving to this because it just reminds me our brains are all so wildly different and yet here we are. We are able to make this space where we can all kind of at least understand each other a little bit when someone has amazing descriptions of what it is to be inside their own brain.

You know, one listener writes, "As a parent of an autistic five-year-old, I feel a tension between highlighting how incredible and wonderfully unique he is. He taught himself to read at two and acknowledging that parenting him comes with profound challenges. For instance, he didn't sleep through the night until this year, and that has resulted not only in his own behavior of volatility, which can be hard to manage, but also extreme chronic sleep deprivation for my spouse and me.

I would never wish to change my son or take away his autism because it is simply part of what makes him the amazing, delightful person he is. But I would greatly appreciate more pragmatic support in navigating the difficulties of helping him adapt to the modern world. Let's bring in Joe in Oakland. Hi, can you hear me okay? Yeah, sure can. Go ahead.

Hi, so I am a parent of a nine-year-old autistic boy. He's non-speaking. And I thought that for once I would maybe get through an autism acceptance month without being moderately triggered or worse, but not so. And I think the reason for that specifically was yesterday on National Public Radio, you know,

someone who was the director of the National Severe Council of Autism was given a 10-minute uninterrupted interview just speaking to, kind of equivocating with our

rfk uh rfk juniors statement and i think anything other than just refuting it and saying it's eugenics and saying it's it's it's so harmful is really misguided and the second point i wanted to mention was just about regarding language i really take issue with the term severe autism or profound autism um and here's why i understand as a parent of a kid who's

is not going to mask, who's non-speaking, who has lots of behavioral, I'm not going to say behavioral challenges, I'll just say like, you know, impulses that are challenging for him. I think the minute that you say profound or severe is the minute that someone is not presuming competence, or in other words, not presuming intelligence and not, not,

assuming that someone is able to learn. You know, it's Autism Acceptance Month every single day of every year. It's Autism Research Month. It's Autism Advocacy Month every day for parents like me. And so I just think that language is really, really important. Tomorrow, I'm going to Sacramento to advocate for inclusive education because California does a terrible job with that. But I think that...

I'm just going to leave you with a few resources, if I may, for parents of non-speakers and professionals, because I think there are people doing really good autistic-centered research that's centering and focusing on autistic people and non-speakers themselves in academia, and it's worth raising up.

one of whom, her name is Elizabeth Torres at Rutgers, and the other is Vikram Jaswal at UVA. They both center autistic people, and they both focus on the importance of motor. Autism, you know, the framing of it as a kind of social disorder or one that needs to be studied from a behavioral lens is so misguided, and I'm not going to get into the whys of that. But basically, I think we need to focus on autismism

autism as it exists with people like my son as more of a disconnect between brain and body and where motor coaching can be really valuable and also where these kids can learn and do learn and they're college graduates and beyond who are non-speakers. We need to celebrate those folks and we need to have parents know that there is a way that you can teach your children regardless of how they may present and more importantly, as important I should say, educators and professionals should

really need to be aware of that as well. Hey, Joe, appreciate that. You sound like a great dad advocating for your kid and for all kids, really. Holden, I might come to you on

on this one. Let me tack on one other comment from a listener in the same vein and then I'm going to come to you. Julian writes, "I appreciate the science advances and nuances of this discussion, but can your guest please also zoom out and address what healthcare policy can do to support a broader cross-section of neurodivergent children, especially when neuropsych evaluations can cost up to $10,000 and prevent many kids from accessing the science and support systems and remain with a diagnosis of misfit?"

Do you want to just from yeah, well, first of all, let me just say to Joe, same thing you said, which is thanks to the support that he's giving. I mean, I think any expert you talk to would say that the number one thing. And as I said, even for for my situation to be able to do the things I've done has all been about the support that I got from Joe.

my teachers and my friends and my parents and other people. And that is the thing that all of us who care about this should be advocating for. As Joe's pointing out, there are differences about how to talk about it. And we're all kind of always trying to make sure we say high support needs or nonverbal or something like that.

And that is evolving to more consensus over time, which is a good thing. But I think for – I mean, it sounds like this listener is talking about kids who may have a pretty similar profile to mine. You know, I –

If I'd gotten a diagnosis in the 1960s, it would have been Asperger's. But in the 1960s, nobody was even thinking about this. So there was no way I was going to get a diagnosis. And I think for...

And for children like that, even if they don't want to go to the expense and have to wait around to get a full diagnosis, I think being aware that these traits form a pattern is

that they can learn to counteract by, like I said, finding friends who compliment them and accept it, but also, as Mary and Christine have said, finding friends where they can be different. Both of those things are important, and I don't think

That are the system is set up to get every one of those kids a diagnosis. And I might never, never have gotten one if I hadn't been in a situation where as an adult, I could, I had access to somebody who could do that for me. Let's bring in another call here. Dean and Palo Alto. Welcome.

Hey, hello. Thanks for having me. I got kind of a controversial take, and I'm going to preface it by saying that I know it's a huge spectrum and there's varying degrees. But one of my major concerns is that

All the additional services, again, I know it's a spectrum, additional services like getting an IEP and a lot of the extra time and space given to kids with autism to do the same work at a slower pace, extra help. I worry that that sometimes may result in

as a crutch later on in life so that when challenges do come up, it's like, oh, I can't do it because I have this thing, you know, and I don't have these extra resources in this case to get things done. Is that a concern from sort of like personal experience or just like about the educational system?

Personal. And I say that as an adult who now knows they have autism. And I had a very troubled youth academically and socially, but I didn't know I had autism. And I just persevered. And my mom would always tell me, you could do anything you put your mind to. And I ended up getting a graduate degree, was a professor for a while. I'm a professional now and have a family.

But I didn't have an IEP. And I worry that if I had, you know, gone through that experience later on in life, every time a challenge would come up, I would probably just, just knowing myself, I would have been like, this is not for me. I can't do it. I have this disability. And I worry that, you know,

some children who do have IEPs, you know, later on in life will, I don't know, use it as like a crutch to not push themselves. I don't know. This may sound very harsh. I said it's controversial. Dean, we appreciate your perspective. Let's get some of the takes on that. Also, for those who don't know, individual education plan, IEP. Christine, talk to me about this.

Oh, I was wondering who you're going to go to with this one. You know, I don't have the lived experience that the caller and maybe the others do. But I will say, you know, I think that you need to meet the individual where they are and give them the supports that they need at that moment. And, you know, and for children, for, you know, busy public school settings, I think that's

that giving extra time is absolutely the right thing to do but hopefully people continue to grow and evolve and rethink what their needs are and what their supports are you know what you what you need when you're 15 is definitely going to be different from what you need when you're 25 and so i think that's just you know that this is not based on this is just i think the way that i think about things and not necessarily i'm not drawing from scientific evidence right here um

Good sort of comment here. Want to get to just run through a few here at the end of the show. You know, one listener writes, you know, I'm a woman who was diagnosed with mild autism in my 40s. I really appreciate this program and hearing the stories from other women with autism that resonate with my own experiences.

I wish I could call in, but I'm hesitant to be out about my diagnosis due to the stigma that still exists and a fear of negative professional repercussions. I'm trying to work my way up to that because I know that the more people who are out, the more it will reduce stigma.

Heather writes, thanks so much for this segment. My diagnosis came in my 40s after my son's diagnosis as I learned and saw myself fully mirrored in the same challenges my son experiences and the strong recognition of the autism wheel spectrum in myself.

Mary H.K. Choi, I feel like you've done some of this work for people with this article in the cut, What My Autism Diagnosis Finally Explained. And thank you so much for joining us this morning, too. Totally. Thanks for having me. It was a great talk.

We've also been joined by Christine Wu Nordahl, who's a neuroscientist and professor in the Department of Psychiatry and Behavioral Sciences at UC Davis. She's the director of the Autism Phenome Project. Thank you so much, Christine. Great to be here. Thank you so much. She also runs the NeuroTeen group, so maybe you can look that up if people are interested in that.

We've also been joined by Holden Thorpe, editor-in-chief of the Science Family of Journals and author of the New York Times essay about autism. He was diagnosed at 53. Thank you so much, Holden. Oh, it's been great. And I just want to say about the last caller that nobody can decide when it's the right time to disclose except the individual who's making the decision. So...

None of us should ever pressure anybody to make a disclosure. Absolutely. Hey, thank you so much, Holden. Really appreciate that. And thank you to all of our listeners and callers who called in with your experiences. We really do appreciate it. Stay tuned for another hour of Forum Ahead with Mina Kim.

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