Episode 123 (Season 4): Not an Epidemic: Behind the Rise in Autism Diagnoses [featuring Dr. Donna Henderson]
Sep 12, 2025
Show Notes
Language matters, especially when it shapes how we, as neurodivergent people, are seen and understood. Conversations about an alleged "Autism epidemic" are everywhere—and can lead to misinformation, stigma, and feelings of shame for Autistic people and families. This episode aims to untangle the myths versus realities, providing crucial clarity and validation in a world full of loaded headlines.
In this episode, Patrick Casale and Dr. Megan Anna Neff, two AuDHD mental health professionals, discuss the narrative that autism is an "epidemic" with Dr. Donna Henderson, an experienced neuropsychologist and co-author of Is This Autism? They discuss the real reasons behind the increasing rates of autism diagnosis, unpack harmful rhetoric, trace the shifting diagnostic criteria and historical context, and highlight what these changes mean for Autistic people today. The episode also offers insight into the lasting impact of stigma—and why representation and affirming conversation make a difference.
Top 3 reasons to listen to the entire episode:
- Gain accurate, research-driven explanations for rising Autism diagnosis rates—understand how changes in diagnostic tools, societal awareness, and self-identification impact the numbers, rather than believing harmful, epidemic-based narratives.
- Learn how language like "epidemic" can shape public perception and personal identity, fueling unnecessary shame and fear, and creating barriers to self-understanding, safety, and acceptance for Autistic people.
- Hear Dr. Donna Henderson’s expert insights and engaging stories, plus practical discussion about self-advocacy, changes in mental health fields, and the vital importance of community, representation, and historical context.
If you've encountered confusing headlines or faced questions about "what’s really going on with increased Autism discovery," this episode provides the clarity, validation, and nuanced perspective the neurodivergent community deserves.
More about Dr. Donna Henderson:
Dr. Donna Henderson has been a clinical psychologist for over 30 years. She is passionate about identifying and supporting autistic individuals, particularly those who camouflage, and she is co-author (with Drs. Sarah Wayland and Jamell White) of two books: Is This Autism? A guide for clinicians and everyone else and Is This Autism? A companion guide for diagnosing. Dr. Henderson’s professional home is The Stixrud Group in Silver Spring, Maryland, where she provides neuropsychological evaluations and consultations for children, adolescents, and adults who would like to understand themselves better. She is a sought-after lecturer on the less obvious presentations of autism, autistic girls and women, PDA, and on parenting children with complex profiles. She also provides case consultations and neurodiversity-affirmative training for other healthcare professionals.
- Dr. Donna Henderson's Website: drdonnahenderson.com
- You can grab Dr. Donna Henderson's books here: isthisautism.com
- Donna’s Trainings:
- Is This Autism? — Clinical Version
- Is This Autism? — For Everyone Else
- Dr. Neff’s article: Is Autism Really On the Rise: neurodivergentinsights.com/rise-in-autism-diagnoses
- The Lost Generation of Autistic Adults (Neurodivergent Insights Training) trainings.neurodivergentinsights.com/course/lost-generation
- Watch the original on Substack: neurodivergentinsights.substack.com/p/rethinking-the-autism-epidemic-field
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Transcript
PATRICK CASALE: Hey, everyone. You are listening to the Divergent Conversations podcast. We are two neurodivergent mental health professionals in a neurotypical world. I'm Patrick Casale.
MEGAN NEFF: And I'm Dr. Neff.
PATRICK CASALE: And during these episodes, we do talk about sensitive subjects, mental health. And there are some conversations that can certainly feel a bit overwhelming. So, we do just want to use that disclosure and disclaimer before jumping in. And thanks for listening.
MEGAN NEFF: Welcome back to Divergent Conversation and our series where we're talking through some of the process of coming to know, and then the emotional experiences that come up for a lot of us.
Last week, we talked about diagnosis and assessment, some considerations there. And another question that we've been getting a lot, Patrick, is around, all of this conversation around, well, is autism an epidemic? And what the hell is happening here? So, what do you think? Is autism an epidemic?
PATRICK CASALE: I would go with an emphatic no. And, you know, I think back when a lot of a directory conversation was happening in this country, we talked briefly on that. I know you kind of did a really extensive, deep conversation with Dr. Donna Henderson, one of the authors of Is This Autism, and really broke this down in a way that both of your incredible minds could. And we're going to link that to this episode.
And no, it's not an epidemic. I mean, you made this one post that was like, "This is why we don't have an autism epidemic. Here's all the research, all the information, the DSM is expanded. We have self-identification. Now people who are getting missed are no longer getting missed as often, not ever, but as often." Of course, it is not an epidemic.
And also, let's just, like, define the… I can't say the word. What's the word when you are… Like, the definition of a word or the origin is-
MEGAN NEFF: Epidemiology.
PATRICK CASALE: Oh, my God, that.
MEGAN NEFF: I want to say epidemiology. Wait, I can't say it. There's a branch of philosophy which is about knowledge, how we come to know things, epidemiology.
PATRICK CASALE: That word, yes, thank you.
MEGAN NEFF: Got it?
PATRICK CASALE: Yes. And if we define epidemic, and I'm just going to read it out loud, a widespread occurrence of an infectious disease in a community at a particular time. So, when we're using language like this, it's for a reason. And originated in the 17th century from the French epidemic, but nevertheless, a prevalence of disease amongst the people.
So, one, I just think that we have to understand that words matter. And language really matters. And the words that we use really play a role here.
MEGAN NEFF: That's so interesting. I think I've been so busy, like, busting the myths, that I haven't even paused to think about how horrific of a word that is, and what that conveys. Like, this is an epidemic. This is a, like, you use the word infectious in there, of, yeah, which automatically, then brings shame to any of us who, well, I'm autistic, and, yeah, yeah.
PATRICK CASALE: Yeah. And you know, I'm not going to get too political on this podcast. I think that certain words are used for certain reasons and to create certain reactions. So, when we are seeing words being thrown around in this country and in other countries, too, it's not just this country, epidemic, disease, disorder, things like that are, we're saying this should be cured, this should be fixed, this should almost be eradicated from society.
MEGAN NEFF: Well, and it brings a fight/flight, and it gets back to, we have kind of nodded to this in previous episodes, that under the current administration, there is a lot of, if we can find the bad object and say, "This is why your life is hard right now. This is why groceries are hard right now." If we can create a bad object to point to, that's a lot of the strategy being used around let's use rhetoric that creates us versus them, that creates the sense that we are being attacked by this outside force, and if we address that thing, we will all be good again, or great again, I should say.
PATRICK CASALE: Yep.
MEGAN NEFF: I feel like we are being cautious in how we use words, because of safety, not because we… Like, when you said, "I don't want to get political." I feel like there's a few ways to interpret that. You and I are both people that come and go from the country a lot, and so we are being cautious for safety, not because we're not political.
PATRICK CASALE: Correct, just trying to let people read between lines with context. But then, I do realize we have a lot of people that sometimes can struggle with context, myself included. So, yes, just trying to protect ourselves.
So, yeah, the answer is no, there's not an autism epidemic. Autistic people have always been here. I mean, we have drawings and like cave drawings from thousands of years ago that would suggest that autistic people existed throughout life and generationally. We just didn't know what to call it. But autistic people have always been here, and going to continue to be here. It does play a role in the conversation that we had last week about diagnosis discovery, self-identification. It definitely creates more shame and stigma. But I also see a lot of people like boldly proclaiming like, "This is who I am." And I think there's no right or wrong answer, because at the end of the day, it is about safety and protection, and you'll have to make your own individual decisions about what feels most comfortable for you.
MEGAN NEFF: Yeah, yeah, yeah. So, autism is also more visible right now, is part of what you're saying? Yeah, absolutely, absolutely.
PATRICK CASALE: Yeah.
MEGAN NEFF: And that's not to say that it doesn't mean that there's not the possibility that true prevalence rates are rising. Like, that's definitely possible, especially my very, like, cheeky response when I was listing out the reasons. I can't remember if I actually put this on social media, I definitely wanted to, was like, "Reason number four, autistic people have sex." Like, we are meeting each other more now, because we're meeting through digital space. We procreate and beyond that, and this is something that Donna mentions in the conversation, which will transition to, but is that the prevalence rate of everything is rising. And so, like, you can look at all mental health conditions and all, like, neurodevelopmental conditions, like the prevalence rates of everything is rising.
So, we're not saying that it's impossible that true prevalence rates are rising, but when you look at those graphs that show that huge spike, that is not what that is capturing. That is capturing all the social context pieces, all the ways that we're screening more, all of the huge, huge changes that have happened to the DSM and the diagnostic criteria, yeah.
PATRICK CASALE: Yeah. And this will be a future episode in the series of Everyone's a Little Bit Autistic. So, we talk about that to some degree in future episodes as well.
And I think that when you see it in such, okay, let's also say that the umbrella under, like, the spectrum of neurodivergence and neurodiversity, there's so many neurodivergent experiences, but autism and ADHD get talked about, probably, in the media. I don't know the numbers, but significantly more than most. So, I think that's another component, right? Is like you said, it's in social media all the time. It's in mainstream media all the time. It's talked about a lot.
And it wasn't talked about a lot a decade ago. I mean, like seven years ago. When was I in grad school? 2012 to 2015, Jesus. I think we used the words autism and ADHD like twice in a childhood development course, that was about it.
MEGAN NEFF: Yeah, yeah, yeah. I mean, we're really in middle of this kind of awareness, like, boom, of there's so much more awareness than there was, yeah, even five years ago, yeah.
PATRICK CASALE: Yeah. I mean, with any marginalized group, I think there can become these zeitgeists and these, like, societal messaging, especially from certain rhetoric and propaganda. And this is not comparing the two, but there was a lot of similar conversation when there was a lot of gay people coming out of the closet, and a lot of lesbian people coming out in the late like 70s and early 80s. It was like there's an epidemic of homosexuality, homosexual… Jesus Christ.
MEGAN NEFF: You sound like me today. Usually, I'm the one struggling with words.
PATRICK CASALE: [INDISCERNIBLE 00:10:23]. And again, used to say, like, society is creating these people. And there's an issue with them.
MEGAN NEFF: Yeah, yeah.
PATRICK CASALE: They're different than us.
MEGAN NEFF: Yeah. I mean, I think humans, in general, can, especially when we're in our defensive or reactionary states, fall into us-versus-them thinking. But I think, especially, in the States, I don't know, there's just something about our culture, especially our culture right now, but I think our culture at its roots, that there's a lot of that us versus them and rhetoric. And so-
PATRICK CASALE: The only way-
MEGAN NEFF: And that's been used toward marginalized groups again and again in our country.
PATRICK CASALE: Yeah. I mean, I was going to say that the only way colonization works, and keeping certain people in power works, is to create [CROSSTALK 00:11:25]-
MEGAN NEFF: We're literally founded off of like the most objectifying us versus them way of being. And it's continued to have a ripple impact in our culture. Yeah, absolutely, yeah.
PATRICK CASALE: So, you know, I think that, for those of you listening, whatever stage of this journey you're in, I know it can feel really scary sometimes when certain words are thrown around, or statistics are thrown around, and it can make you question your own sense of self, or it can make you feel like less than, or there could be more shame, there could be more stigma, there could be more discrimination. So, we just hope-
MEGAN NEFF: For people asking questions that are hard to answer, like, I bet a lot of autistic people who are out have gotten a lot of questions around this. And even people who might think it's small talk, "Oh, I hear it's an epidemic." And so, then, you're in a position of, like, needing to educate more, which can be laborious, yeah.
PATRICK CASALE: So, we do hope that this conversation that we will-
MEGAN NEFF: So, yeah, so we'll transition into this next. So, to give listeners context, this is a conversation that I recorded with Dr. Donna Henderson in April, when this was shortly after RFK came out with the comments that he did. And we decided, let's just hop on a call and record a conversation about what's happening. We have no idea what we're going to do with it, but let's just do this.
I did release it back in April on my sub stack. It will be linked here in our YouTube, but if you would also like to watch the video, my team went back through after our conversation and made slides to go with it, because we're talking about a lot of dates and numbers. And we thought the visual prompts would be really helpful.
So, if you're someone who does well with visual prompts, then you can either check that out. That video has remained free and open to access. But if you go to our YouTube, you can also see the video version that will have the slides and visual prompts. It is a longer conversation, but I think we walk through a lot of really, really good historical context that helps explain why we are where we are.
PATRICK CASALE: Yep. And I hope that that helps just affirm and debunk some of these myths and misconceptions. And I hope it also helps validate your own experiences if you do identify as a part of our community.
I appreciate you and Dr. Donna Henderson doing that work and putting that mental energy and labor into this as well, because I enjoyed having her on here when we did the neurotype series. I only met her very briefly, but have a profound respect for her and what she has contributed to both the ADHD and autistic community. So, I hope you all enjoy it. I hope you all enjoy this series as we embark upon this journey together over like 16 episodes.
And, yeah, I don't know what else to say.
MEGAN NEFF: We'll see you next time.
PATRICK CASALE: Yeah, we will see you next Friday on all major platforms and YouTube. Like, download, subscribe, share. See you.
MEGAN NEFF: Well, good morning, Donna. Good afternoon to you.
DONNA HENDERSON: Good morning to you. It is afternoon here.
MEGAN NEFF: So, I'm just going to set the stage for whoever ends up listening to this. Last week, okay, my brain, RK Kennedy?
DONNA HENDERSON: Yeah, RFK.
MEGAN NEFF: RFK. Last week, RFK did the whole thing, autism epidemic. You and I chatted. And I was kind of like, I feel like it'd be really fun to have a conversation with you. We record it. And then, we'll, I don't know, put it out to the world somehow.
But right now, as we're recording this, we don't really know what we're going to talk about, and we don't really know where we're going to release we're going to release this. We're both in our ADHD energy, of like, this feels like an important thing to talk about. And it's something you and I have both thought a lot about. And yeah, so do I have that context right, of like, what we're doing here?
DONNA HENDERSON: Yes. And if anybody has ever doubted that either of us is an ADHDer, this will surely do the trick. We have absolutely no plan here.
MEGAN NEFF: Yes, yeah, this is us in our ADHD kind of magic. And we'll see if something cool comes out of it, or if it's like a rambling mess. And we're like, "Well, that was cool to see you today. Donna, bye."
DONNA HENDERSON: Yeah, at least we get to see each other and hang out for a little while.
MEGAN NEFF: Yeah, well, honestly, there's been so many times that we've met to work on projects and I've been like, "Oh my gosh, I wish we were recording this." Because often, when I meet with you, I really love the generative ideas that come from conversations.
DONNA HENDERSON: Yeah, I always, always learn from you. We always inevitably have a moment of, "Oh, my God, that's how you see it. This is how I see it." And it's always fun.
MEGAN NEFF: Yeah, I do love that. Yes, because we can kind of zoom out and reflect on the cross-neurotype pieces as they come up. So, I guess, yeah, maybe I'll zoom out to, I'm sure you've had this question before. Like, I actually had, like, graphics, like, drafted in my Canva to talk about the autism epidemic thing, like, for months that I've just not posted, because this is not a new question. Like, we've gotten this question for years. There's always been people who are like, "It's an autism epidemic." So, I'm sure this is something you've thought about before last week, before RFK, whatever initials that I always forget. So, yeah, what comes up for you? Because I'm sure you've gotten this question hundreds of times.
DONNA HENDERSON: Honestly, every time I get this question, what comes up for me is individuals that I know. And you are a perfect example of that. It's people like you who, 20 years ago, you would never have been recognized as autistic, 30 years ago. I mean, you would have been laughed at if you even brought it up. You wouldn't [CROSSTALK 00:17:39]-
MEGAN NEFF: I still would be. I still would be.
DONNA HENDERSON: You still would be, right? I mean, 10 years ago would have, I think, been almost impossible for you to get a diagnosis. It's really in the past five to 10 years that we're making such good progress, right? I think you're such a great example of this.
MEGAN NEFF: Yeah, I talk about that. So, I just recorded and released the last generation course, which I feel like it's my, like, synthesis of my last four years of learning, and your influence is all over that course. So, thank you.
But I talk about that of like, I'm part of this generation, and that I would not have received a diagnosis in the 80s or 90s. First of all, because of the diagnostic criteria being used, but also, people just weren't looking at shy, academic girls, especially girls who also are ADHD. So, then there's the like, complexity of traits showing up and thinking autism.
There was a study, I think you were the first one that pointed me to it, that talked about how… And I think it was done across four countries. This is how my brain works. I can remember the details of the study, but not the author. It was done across four studies, but it showed people born after the mid-1990s were four times more likely to receive a diagnosis after the age of 18 versus those born previous. And so, that's something I like to tell clinicians of, so if you're working with anyone born before mid-1990s, like, this should be on your radar.
DONNA HENDERSON: And I think when John Elder Robison read that article, he wrote some piece about it, and he also pointed out that the data showed that the older you are, the less likely you are to be recognized as autistic.
MEGAN NEFF: Yeah, yeah.
DONNA HENDERSON: Yeah.
MEGAN NEFF: And I've heard you talk about this too, then, so the older you are, less likely, because, like, just what was the diagnostic criteria that was being used in childhood, what we knew about autism, but then, also, then they're working with adult providers. And one thing that we know is adult providers, they're not trained in adult autism. And there's that assumption, well, if it's autism, it would have been caught in childhood. So, there's like that double impact happening.
DONNA HENDERSON: Exactly. Adult providers get almost no training in autism. Hopefully, that's changing, but historically. So, they have no knowledge, they have no confidence. And like you're saying, there is that underlying assumption, even if it crosses their mind, the next thought is usually, "Somebody would have caught it by now." And so, then they don't consider it.
MEGAN NEFF: Yeah, yeah. And I heard you talk about this in your autism training you did. The other thing will be providers, like, maybe autism has actually been ruled out before, but again, someone who had, maybe it was based on an older version of the DSM being used, or is a provider not aware of masking, and that that will carry a lot of weight of like, "Oh, well, it's been looked into. It's been ruled out. So, nope."
DONNA HENDERSON: Right. And they're not willing to open it up again, or even look back and think, "Well, why was it ruled out?" And quite often, it was ruled out because she made eye contact, because she has a sense of humor, right?
MEGAN NEFF: Oh my gosh. I've heard that so many times. And I feel embarrassed. Do you feel embarrassed? Like, for our field, when you hear stories?
DONNA HENDERSON: Embarrassed, and I want to go around apologizing to people. Yeah, yeah.
I actually worked very closely with the grad student, and the name of her dissertation was, But She Made Eye Contact, because it was all about this. It was a great title.
MEGAN NEFF: That is such a good title. Did that get published?
DONNA HENDERSON: Not yet. Hopefully, it will be.
MEGAN NEFF: Yeah. But She Made Eye Contact.
DONNA HENDERSON: Right? Because we've heard that phrase over and over and over and over and over again, yeah.
MEGAN NEFF: That is such a good title, yeah, yeah. But people will pick one thing. And again, this is something I heard you say in a training. People will assume, because if you can do one thing that's, like, not a stereotypical autistic trait, clinicians will rule it out. Like-
DONNA HENDERSON: They code a behavior as a non-autistic behavior. Like, making eye contact is a non-autistic behavior in some people's eyes. So, if you do that once, it negates all the million autistic traits and behaviors that they're also noting, right?
MEGAN NEFF: Which is such bad science, like, for being a science field, wait, can you imagine? Can you imagine that with, like, almost any other diagnosis?
DONNA HENDERSON: No, I can't. I mean, it's beyond science; it defies common sense.
MEGAN NEFF: Back to the stereotypes, and that's something I talk about a lot, is the stereotypes that have really created this cultural archetype have made it so hard. Like, that gets into our brains at a very fundamental level. So, even if we have clinical training on top of that, it doesn't undo that.
And so, for parents, like I know, that made it hard for me to see my female child, because I had the archetypes. And looking back, they were obvious signs. Like, we literally had her hearing checked when she was three, because she stopped responding to her name. No one thought autism.
DONNA HENDERSON: Yep. And especially, we know that if somebody is physically attractive, and intelligent, and compliant, like all of those serve to cover up the autism in a clinician's eyes, right? And not just clinicians, parents, teachers, everybody, for sure.
MEGAN NEFF: Yeah, yeah.
DONNA HENDERSON: Yeah. This brings to mind a whole nother reason, and for all of this that we're talking about, which is diagnostic overshadowing, because so many of these kids and adults get other diagnoses that clinicians are more comfortable with, like ADHD, or anxiety, or borderline, or whatever, right?
MEGAN NEFF: Yes, absolutely, yes. And this is something I think you and I could both nerd out on literally all day.
DONNA HENDERSON: Yeah.
MEGAN NEFF: For the course, I made a new graphic. I'd love to show it to you, where I made autism in the middle, and then I put, like, OCD, PTSD, and I started actually mapping out, like this criteria of PTSD could be… Like, this is a way it could overshadow this autistic trait.
DONNA HENDERSON: Wow.
MEGAN NEFF: And especially, because we know, you know, Johan Nyrenius studies that he's doing around autistic adults in psychiatric clinics is so eye-opening. And one of his most recent ones was showing how we have more co-occurring mental health conditions on average than non-autistic people.
So, it's not like, oh, the social anxiety is overshadowing the autism. It's like the social anxiety, and the PTSD. Like, there's often, like, three or four mental health conditions in the mix. And, yeah, especially because autism is just not on people's minds or real out lists, it won't look like autism. It'll look like a really messy clinical picture of social anxiety, PTSD, depression, bipolar.
DONNA HENDERSON: Right, right. And until recently, clinicians weren't aware of this whole dynamic. And now I think more and more clinicians are becoming aware of the need to step back and look at the whole person. And I think that's contributing to the increase in diagnosis rates and recognition rates.
MEGAN NEFF: Yeah, [CROSSTALK 00:26:24]-
DONNA HENDERSON: You know, we weren't talking about that 10 years ago, sorry.
MEGAN NEFF: Oh no, go ahead. Well, I was just going to say it's interesting, because when we talk about the increasing rates, like, my understanding, correct me if I'm wrong, it's all based on, I think, it's usually eight-year-olds they look at, like we see-
DONNA HENDERSON: Yeah. [CROSSTALK 00:26:39].
MEGAN NEFF: So, it's not even tapping into the adults that are getting diagnosed, which we know there are many, but it's eight-year-olds. So, now, I saw it's just been updated to one in 31 eight-year-olds have an autism diagnosis, which means we're getting a lot better at screening children, which is great from, like being able to provide supports, and education supports, and self-understanding for kids. So yeah, it would be interesting to even look at prevalence rates in adults, because we know that there's so many undiagnosed adults.
DONNA HENDERSON: Right, yeah. And when I started doing this work, I started getting a lot of clinicians who see kids and adolescents reaching out to me for case consultation. And now, it's more and more all about the adults, the case consultation work I'm doing. So many clinicians who see adults are saying my practice is fundamentally changing as I think about this, and as people are coming in, wondering if they're autistic, or I'm wondering if they're autistic. I've seen a huge shift there.
MEGAN NEFF: How do you feel about that? Like, just in the sense of the work you do, and because, yeah, you started out as like a pediatric neuropsychologist.
DONNA HENDERSON: Actually, I started out with adults.
MEGAN NEFF: Oh, you did?
DONNA HENDERSON: Yeah, in a previous lifetime, I was actually the director of a brain injury program, an acquired brain injury program for adults. Then I went into private practice, just doing ADHD, LD work, and only with adults. And then, I gradually kept moving my age range younger and younger. It went from 18 to 17 to 16. Now, I've been at six for many, many years. I'm not going to go below six. And I had to do a lot of retraining and get supervision and everything for that. But, yeah.
MEGAN NEFF: But now it's going back up.
DONNA HENDERSON: And now it's going back up, yeah, yeah. Yeah, well, I mean, you and I both love that phrase, the lost generation of autistic adults, which I think was originally Meng Shuar Lai and Simon Baron Cohen.
MEGAN NEFF: I'm so glad that you can pronounce both their names, because I am typically, like, just go through this article, which I learned this word from you, phonetical dyslexia, so pronunciation is really hard. So, I'm really glad that you can pronounce both of their names, because yes, they are the ones that coined it. That's my understanding as well.
DONNA HENDERSON: Yeah, yeah.
MEGAN NEFF: Which is [CROSSTALK 00:29:09]-
DONNA HENDERSON: And I got you on the pronunciation. I got you. [CROSSTALK 00:29:12]-
MEGAN NEFF: Whenever there's a hard word, I'll be like, "Donna." And Simon, again, can't pronounce his last name, but it's interesting that he coined it because he's a controversial figure in the autism space, but then, that phrase feels so affirming. So, I'm kind of glad he's second author on that article.
DONNA HENDERSON: Yeah, yeah. And Meng Shuar Lai, who's the first author, is truly one of my all-time favorite autism researchers. He's truly amazing.
MEGAN NEFF: One thing we know is research happens, and this is true of medical and clinical, and it takes a long time, like sometimes 20 years to trickle down to clinical work, which is also why I got so excited about your book, because it's one of the things that you help bridging the gap between the research and the clinical training, now, to get training programs to actually start using that book and to start doing the training. But that is also part of this increase is that things that are known in the autistic community or even in research take time to get into clinical training.
DONNA HENDERSON: For sure, for sure. But I mean, we started this conversation with me saying that you are such a great example of why the prevalence rates are going up. And now, if I think about it, I'm a great example of why the prevalence rates are growing up in a totally different way, which is that 20 years ago…
So, I was licensed in 1991. When I went to graduate school, I don't know that the word autism was uttered once. I mean, if it was it, I certainly didn't notice it. I absolutely never had a class or an entire lesson on it. It just wasn't part of my training in the late 1980s.
And so, I never diagnosed autism year after year after year after year. I didn't diagnose it. Now I diagnose it all the time. And there are tons of clinicians like me who got training in this so much later, so recently. And now we're diagnosing it a lot. That's not an increase in prevalence, that's an increase in clinician awareness, right? So, I'm a good example, just like you are.
MEGAN NEFF: That'd be a really interesting list. Again, I think in visuals, like crossing out increase in prevalence, strike out, and then, an increase of, and like, what actually is this an increase of? So, one would be, what did you just say? Clinical…
DONNA HENDERSON: Awareness.
MEGAN NEFF: Clinical awareness. What else?
DONNA HENDERSON: Can I put with that clinical… I'm writing these down too.
MEGAN NEFF: Yeah.
DONNA HENDERSON: Clinical confidence.
MEGAN NEFF: Clinical confidence. I love that, yes, clinical confidence.
DONNA HENDERSON: Because when I first started diagnosing autism, and a lot of people around me weren't seeing it the way I was, and there were times that I didn't diagnose it that I wanted to because I wasn't confident enough, that I was getting pushback from the psychiatrists, say, or from the parents. I wasn't confident enough to really go to bat for that kid and help everybody understand, you know?
MEGAN NEFF: Well, still, but especially a while ago, it was seen as giving someone tragic news. And so, you do want to make sure it's not anything else before I hand over this tragic news to this family or this child. I guess it's, maybe an increase in autism appreciation or neurodiversity appreciation, where more and more people, and families, and clinicians aren't seeing this as like a tragic thing. You know, that's still actually quite prevalent, but much less so than, you know, 20 years ago.
DONNA HENDERSON: 100%, I agree. Can we call that clinician comfort?
MEGAN NEFF: Clinician comfort, yes. So, I feel like we need like a clinical version of this, but then, also, a societal...
DONNA HENDERSON: We have clinician ones, clinician awareness and knowledge, right? Which are two different things, right? Awareness is just generally having autism on your radar, which in and of itself is a big deal. And then, separately, clinician knowledge, actually knowing how to understand the diagnostic criteria, knowing what questions to ask, and how to listen to people. And then, clinician confidence to not be afraid and to trust our clinical knowledge. And then, clinician comfort to not think we're giving horrible news to somebody like you have cancer.
MEGAN NEFF: Yeah, yeah.
DONNA HENDERSON: Right?
MEGAN NEFF: Yeah. Wow. That was really brilliant what your mind just did there. Clinical awareness, clinical knowledge, clinical confidence, clinical comfort.
DONNA HENDERSON: I mean, I was just thinking, I don't know how this fits into it, probably, in comfort and confidence. But I can't tell you how many clinicians have said to me, "I have some clients I am sure are autistic, but I don't feel empowered to bring it up, much less diagnose it." Because either A, a master's level, like an LCSW. But in many, if not most states they are allowed to diagnose autism, but they've been given to believe that it has to be a psychologist or a psychiatrist." Which is not true. And that's so important because it's an access issue.
Or B, they're not trained to give the ADOS. Which makes me absolutely crazy, because you don't need to give an ADOS to diagnose autism. So, these, you know, misunderstandings that clinicians have about all of this.
MEGAN NEFF: Yeah, I mean, that's a huge piece of it, too, is there is so much fear. Like, it's interesting hearing you talk about your training experience, because mine is not that long ago. I graduated in 2021. And autism was talked about, I briefly remember it in our, like, psychopathology class, when going through the DSM, and then in the developmental class. But adult autism was not talked about, like, in-depth training. It was just very clear, if you do autism, then you do, like, another five extra years. And it's like your residency, and you go specialize in it. Otherwise, it was not talked about.
Which is wild, again, when we like Johan Nyrenius work, which showed one in five people seeking outpatient psychiatric care were… Or 18.9% to be more specific, were autistic, and only 0.53% knew. So, it's wild that in mental health, when we're training to be mental health providers, we are not talking about adult autism. That was a rabbit trail training.
My training also did not talk about autism. And even as a psychologist, I was like, "I don't think I can diagnose this." One of the most empowering conversations I had, it was my internship year. And I wanted to diagnose autism. And I wasn't sure I could.
And my supervisor was like, "Well, it's in the DSM. Like, you can diagnose it." And this was a non-autistic supervisor. And it was really beautiful to me that she, like, kind of granted me permission to rethink this idea that, you know, autism can be diagnosed without robust neuropsych assessments or the ADOS.
DONNA HENDERSON: Yeah, I like making a list. We both like making lists, I think. Here is the list that I was writing while you were talking, because that was really, really wonderful, Megan Anna, myths that clinicians believe. There are so many myths that clinicians believe that they need to doctor level. That's not necessarily true, that they need to be a neuropsychologist, or to do some kind of testing, or even rating scales, that's not true. That they need to be ADOS trained, that's not true. That they need specialized training in autism, that's kind of sort of partially true, right? Like, we need to be educated, we need to understand these things. But you don't necessarily need like a specialized postdoc, right?
MEGAN NEFF: Like, go take your training on autism, or read your book, or take my last generation training, and, like, I feel like people would be good to go, yeah, with that info.
DONNA HENDERSON: Yeah. And do case consultation when you need it, if you have a case you're not sure about, right? It doesn't have to be doing some years long specialized training at Harvard Medical School or whatever, right?
MEGAN NEFF: Yeah.
DONNA HENDERSON: I think there was one more myth. Oh, you said this earlier, this myth that if somebody else ruled it out, then I either don't need to consider it, or shouldn't consider it, or can't consider it, or am excused from considering it.
MEGAN NEFF: Oh, I love that, excused from considering it, yeah, yeah, yes. And partly, that excuse, I mean, it's complex to consider, especially if you've not been trained in it. So, I can see, yeah, excuse from considering it.
And if there's emotional discomfort, because if you do have that ableism around it, of like, well, I would definitely not feel comfortable bringing this up to a client. So, like, yeah, we don't need to consider that bad thing. There might be relief in that for a lot of clinicians.
DONNA HENDERSON: Right.
MEGAN NEFF: Did I ever tell you about the time in my training, it was my assessment class, the very first year? And so, obviously, when we're learning to do assessments, we first do them on ourselves. And it was the kind where it gives you like a printout report of things to look into.
And on that report, the second condition listed was autism. I like see the visual, autism spectrum disorder. And I remember looking at that and being like like, "What the heck?" Like, first of all, I had my own ableism. I had a negative response to seeing that. And then, I, like, laughed at it. And I was like, "That's ridiculous. Why would…"
And I had all those thoughts of, like, that's a childhood thing. Like, what is this test that's recommended I look into autism? And I just totally disregarded it for, you know, five more years until I revisited the autism conversation.
DONNA HENDERSON: That is amazing, because it just goes to show you, like, how far we've come, right? You took that test in a time not that long ago [CROSSTALK 00:39:41]-
MEGAN NEFF: 2017 is when I took that and saw that.
DONNA HENDERSON: Yeah, 2017, that is not that less than 10 years ago that your response was, "This is obviously a mistake." How absurd, right? Unbelievable, right? How far we've come, yeah.
MEGAN NEFF: Yeah, yeah. Like, I literally was staring at data that was like, "You should look into this." And I was just like, "Nope."
DONNA HENDERSON: Right. And if you had brought it to any clinician at that time, they would have said, "You're right. This is a mistake. You must have answered the questions wrong or something. "
So, let's see. We made a list of clinician reasons-
MEGAN NEFF: Yeah.
DONNA HENDERSON: …for the increased recognition. Go ahead.
MEGAN NEFF: Oh no, finish your thought.
DONNA HENDERSON: I was just going to say, let's make more lists.
MEGAN NEFF: Yeah, well, perfect. That's what I was going to say. It's like, I kind of love this social historical context. And I actually like talking about this, because understandably, there's a lot of anger toward clinicians, which, again, like very understandable.
But one of my big things is I like to kind of melt defenses and shame when I'm introducing new ideas, just because I think it's more humanizing, more effective.
So, I like to walk people through, like, here's the last kind of 100 years of autism. So, if you feel like, "Oh my goodness, oh no, I've been missing people." Like, it's okay, in the sense of we are all working with a very specific social context that has led to this moment. And I think that kind of zoom-out view is really helpful. Like, if we think to just, you know, 60, okay, now my math is being stretched, 80 years ago, 70 years ago, where we were talking about this as child onset schizophrenia. Like so, much has changed.
DONNA HENDERSON: Right, yeah. I actually, at one point, went through the DSM, the various DSM, the way they wrote up autism. And it was sort of mind-blowing. And early on in, I want to say it was the second DSM, I have notes here somewhere, autism wasn't even mentioned [CROSSTALK 00:41:53]-
MEGAN NEFF: It's the third DSM.
DONNA HENDERSON: It was, right. So, I'm just saying, like, in the 1970s, it was part of schizophrenia. It was like a childhood kind of psychosis, right? So, if you raised children in the 70s, there was zero chance you were even going to remotely think of autism for your kid, right?
And then, you're right. It was that the DSM-III, right? But even then, that was 1980, that was infantile autism. So, the name tells you they were really thinking about children under the age of three. And the diagnostic criteria were very extreme in the way they were written. And I think there were, like, eight, and you had to meet all eight. There was no flexibility.
And the criteria, oh, I just pulled some of them up, onset before 30 months of age. So, very strict there. Pervasive lack of responsiveness to other people, gross deficits in language development. I mean, I could go on and on, but you get the idea. I mean, it was really extreme.
MEGAN NEFF: [CROSSTALK 00:42:57] what we now would say is a very specific presentation of autism?
DONNA HENDERSON: Right. And only that for sure. And so, you brought this up because of, like, the parents and clinicians who might feel guilty about not having recognized kids from the past. But so, if you were raising or clinically seeing kids in the 1980s, those were the diagnostic criteria. Of course, you were going to miss them, right?
MEGAN NEFF: Yeah. And it's why I can't say like, "Oh, I was missed in childhood." I wasn't." Like, I wouldn't have met that criteria.
DONNA HENDERSON: Right. That's right. That's exactly right, yeah. So, like, as Bill Gates said, I think he said recently, "If I was being raised now…" I don't think he said I was missed in childhood, right?
MEGAN NEFF: Yeah, no, I noticed his language too, because it wasn't even like, "I'm autistic." It was, "If I was…" It was very distancing. But, I mean, I actually enjoyed pieces in that interview, but it's just interesting his language, "If I was a child now, I would be diagnosed with this"
DONNA HENDERSON: Yeah, right.
MEGAN NEFF: Yeah, yeah.
DONNA HENDERSON: Yeah, yeah, okay. So, then 1987 was the revision of the DSM-III. So, the III-R. And they did relax things a little bit. So, then you needed like eight out of 16 criteria. But the wording and the examples were still completely extreme. So, here's some examples. Treats other people as if they were pieces of furniture.
MEGAN NEFF: Wait.
DONNA HENDERSON: That was an example in it, reads phone book to uninterested ear. Market distress, for example, if a vase is moved from its usual position. I got to give you one more, insist on carrying around a piece of string.
MEGAN NEFF: Those are so specific, and it's not getting at, like, what's happening beneath, like, why is that string important? Why might a child be rehearsing text to someone else? Those are so Raymond.
DONNA HENDERSON: So, Raymond, right? And Raymond. And so, that was 1987, and Raymond came out in 1988. I don't know if there's a connection there, but interesting.
And in that one, it still was very much focused on before 36 years of age, although they did say, like, as a clinician, you could say, "Oh, this is a late diagnosis." Meaning after 36 months of age, but, like, a late diagnosis.
MEGAN NEFF: That's wild. Yeah, that has very different meaning now, talk about late diagnosis.
DONNA HENDERSON: Right.
MEGAN NEFF: And are like [CROSSTALK 00:45:43]-
DONNA HENDERSON: Like, you're 60s, right? Exactly, exactly. Do you think this is helpful? Just going through the DSMs?
MEGAN NEFF: This is so helpful. Like, no, I think this walkthrough is great, and maybe we can even make some visuals to go with it. Okay, so we're up to 87. [CROSSTALK 00:45:49]-
DONNA HENDERSON: Okay, so '87, still really restricted childhood. So, then in 1994, we had the DSM-IV. And it was called autistic disorder, which was separate from Asperger's and Rett syndrome, and pervasive developmental disorder, not otherwise specified, which people may or may not know that the old joke about PDDNOS, so pervasive developmental disorder not otherwise specified. It was like a waste basket. Like a, "I think this kiddo is kind of sort of autistic, but I'm not sure, and I'm not confident, so I'm going to go with PDDNOS." And we used to all say it stood for physician didn't decide or psychologist didn't decide, that's what the PDDNOS was. It was like a way where you didn't have to really decide or give the-
MEGAN NEFF: You didn't have to commit to the big bad thing.
DONNA HENDERSON: Right, exactly. You didn't have to drop any word, yeah. And so, that was in there as at '94, but it still said onset prior to three years. Even in the 90s, we had that onset prior to three years. And there was no talk about camouflaging at that point, still. So, that was the DSM-IV.
MEGAN NEFF: And then, Asperger's was also introduced.
DONNA HENDERSON: Exactly, yeah. Asperger's was in there. And I had a question as I was thinking about this, when the CDC talks about rates of autism diagnosis when they were looking at the DSM-IV, like in '94, '95, '96, all those years, did they include people who were then diagnosed with Asperger's, or Retts, or PDD? Because like-
MEGAN NEFF: Yeah, I don't know.
DONNA HENDERSON: …if not, that's a big deal.
MEGAN NEFF: And like from a data perspective, that would be a huge spike. Because all of a sudden, if those were spread out like across five different diagnoses, and then, all of a sudden, they become one, that in and of itself would be a huge spike in the data.
Wait, that's a good question. I want us to put this out, and then I want someone who-
DONNA HENDERSON: Someone to tell us, you tell us, because I also read that over 90% of the kids who had been diagnosed with any PDD, so autism, Asperger's, PDDNOS, Retts, I feel like I'm forgetting one, but you get the idea, over 90% of them met the DSM criteria when we went to the DSM-5. So, they are all autistic. So, we need to understand that, is the point.
MEGAN NEFF: That is one I had not considered. Like, I've considered several points for the increase, but I had not considered that data reporting. That's huge.
DONNA HENDERSON: Yeah, huge.
MEGAN NEFF: And wait, when would that have gone into effect in…
DONNA HENDERSON: In 2013.
MEGAN NEFF: Because like the graph I have, and the one that's often cited is from 2000 to 2020, where we go from one in 150 to one in 36, now one in 31, because it's a huge like… But that would have made such a big difference in 2013 if all of a sudden were take… Yeah, okay, we need to know that.
DONNA HENDERSON: It goes up sharply after that. And it's a combination of all the different kinds of things we're talking about today, but that's a big piece of it [CROSSTALK 00:49:30]-
MEGAN NEFF: And ADHD. Like, you can now diagnose both ADHD and autism when we get to or are we done with DSM-IV before we [CROSSTALK 00:49:37]?
DONNA HENDERSON: Yeah, but this is good. Now, let's make a list of all the changes in DSM-5. So, like the first one is lumping all the things together.
MEGAN NEFF: Yeah. Okay, I'll work on that list. All the-
DONNA HENDERSON: You do that.
MEGAN NEFF: Okay [CROSSTALK 00:49:49]-
DONNA HENDERSON: [CROSSTALK 00:49:49].
MEGAN NEFF: … all lists.
DONNA HENDERSON: All right. DSM-5 changes. So, one was all these different diagnoses got lumped together as autism spectrum disorder. And over 90% of the kids with all the other ones fit into this. So, that's huge right there.
Then, as you just pointed out before 2013, clinicians were not allowed to diagnose autism and ADHD in the same person, which never made any sense to me. I have yet to meet somebody who understands that rule.
And so, think about it, if you're a clinician and you have to choose between diagnosing autism and diagnosing ADHD, right? What are you going to do? The big, scary one, or the one that everybody's comfortable with, where you could just take a pill to fix it, right? So, we know that that happened a lot. And now, as of 2013, in the DSM-5, we could diagnose them together.
The other big change in the DSM-5 was recognition of camouflaging. Like, it actually says it in there. It says, you know, I forgot the wording.
MEGAN NEFF: And was that in the TR update or was that in the original DSM?
DONNA HENDERSON: I think it was in the original DSM-5, not the TR update, yeah. It said something like, "Symptoms may not manifest until social demands exceed limited abilities." Something like that.
MEGAN NEFF: It's very vague, but it's in there, which is huge, yeah, yeah.
DONNA HENDERSON: Yeah. And I'm pulling out my DSM now to check myself. I don't think there's anything about age for the first time. So, they finally got rid of that. Also, oh, that's a clinician myth. Do you still have a clinician myth list going? This whole idea that it has to be shown by age three, or any other age. Like, there is no age, it says, okay, I pulled out my DSM, it has to be present in the early developmental period, but may not become fully manifest until social demands exceed limited capacities, or may be masked by learned strategies in later life. And that's huge right there.
MEGAN NEFF: That is so huge, that is so huge.
DONNA HENDERSON: Yeah, yeah.
MEGAN NEFF: So, I thought, and I could be wrong, but I thought those were TR updates that were just put in 2020, but I…
DONNA HENDERSON: I could be wrong, too. So, we need to find out.
MEGAN NEFF: We should find that out because that would signify a more like recent shifts.
DONNA HENDERSON: So, my little book here is copyright 2013. It's not the TR, which is my mini DSM.
MEGAN NEFF: Got it. So, yeah, no, so you're right. I know the TR did something, because I remember being very, like, interested in what they were going to do. And I know they did something. And for those-
DONNA HENDERSON: It was really minor.
MEGAN NEFF: It was really minor. For listeners, so, like, the DSM changes numbers every whatever. But then TR are kind of like updates between, like, we're not ready to go to DSM-VI, but we might update it. So, there was like, you were earlier talking about, was it DSM-III-TR, which was kind of in between DSM-III and IV. Okay, so that is DSM-5. I didn't realize that. That's actually good for me to know. And the TR updates-
DONNA HENDERSON: [CROSSTALK 00:53:12]-
MEGAN NEFF: …they were super minor.
DONNA HENDERSON: The TR, it was nothing substantial. I remember-
MEGAN NEFF: [CROSSTALK 00:53:17]-
DONNA HENDERSON: I went into writing the book, right, yeah.
MEGAN NEFF: We were all hoping for, like, really big updates in the TR. And then, I remember I was like, "Ugh."
DONNA HENDERSON: Yeah, it was really minor, minor, minor things, yeah.
MEGAN NEFF: Okay, so DSM changes. So far, I have all diagnoses get lumped into autism spectrum disorder. We get rid of Asperger's and all the other ones. 90% fit into that. ADHD, you can now diagnose both. Masking and camouflaging is mentioned. And the age requirement is loosened.
DONNA HENDERSON: And I'm not 100% sure about this, maybe you'll remember, I think that's the first time sensory got put in there-
MEGAN NEFF: Yes, it is.
DONNA HENDERSON: …which is huge. That's huge.
MEGAN NEFF: Yes, sensory got added. Yeah, I want to actually look at the criteria. Was B beyond adding sensory was… Because now you have to meet two of the four for criteria B. Are there other changes there that you're aware of beyond adding sensory?
DONNA HENDERSON: I don't think so. Because interests, repetitive behaviors, and flexibility, I think, have been in there for a long time. I think sensory was the big change there, and making it two out of four, which is, like, I feel like I keep saying the word huge, but it was huge.
MEGAN NEFF: I mean, when you go from like, you have to meet all eight of these criteria in DSM-III that are very, like, specific to here's three criteria A and 24. And then, there's examples of, like, all the ways this can show up. Yeah, I mean, it is huge. It's a huge shift. Of course, we'd go from one in 25,000 to one. And, I mean, not, of course, but to one in 31. But that makes sense.
So, yeah, this is a huge, huge one. And it's actually number one on my list of, I put together a list of five reasons, and my number one was broadening diagnostic criteria. So, it is huge. It really is.
DONNA HENDERSON: Right. And, you know, it would be interesting, I don't know if anybody's done this, but take a group of autistic people, and who absolutely meet the current criteria, and then see if they would have met criteria with the II, with III, with the IV. I think that would be really telling.
MEGAN NEFF: That actually [CROSSTALK 00:55:39]-
DONNA HENDERSON: [CROSSTALK 00:55:40] yeah.
MEGAN NEFF: …like, yeah. That'd be such a great way of visually capturing this. Yeah, I mean, there's so many of us. And it could even be, like, well, no one had met criteria because they already had ADHD diagnosis in 2010. So, like, out for that reason and listing out the reasons why, yeah. Okay, so diagnostic broadening.
DONNA HENDERSON: Yeah, and then just our understanding of what each criteria means is the other way that we broaden our understanding of all of this is that stimming doesn't necessarily just mean flapping or echolalia. Stimming can show up in countless ways, right? Like pacing back and forth or watching The Office 47 times.
MEGAN NEFF: Yeah, or, like, for me, something I've done my whole life, like, I'll listen to a song on repeat for like a week, and like, I've never thought of that as stimming, or weird. It was weird to me that other people, like, listened to songs like a playlist. Like, why would your brain want that?
DONNA HENDERSON: Yeah, and if I had to listen to the same, even a great song, like, over and over again for a week, I'd lose my mind, yeah.
MEGAN NEFF: Yeah, so I actually had a, she's also a psychologist, she's ADHD. I was autistic. I didn't know was autistic. We were driving to a conference together. And we're, I think it was kind of in a, like, getting to know each other, like, what's some of your favorite music? And I put my playlist up, and like, we wouldn't even finish a song, and she'd move to the next one. And I was like, "What is happening?" Then I was looking back and like, "Oh, that was ADHD and autism there."
DONNA HENDERSON: Maybe we need to design our own little questionnaire, and this could be part of it, right? You know, do you prefer to listen to the same song over and over again for a while, or do you prefer to move from one song to the next?
MEGAN NEFF: Rapidly, yeah.
DONNA HENDERSON: Yeah.
MEGAN NEFF: Yes, yes. So, more deep understanding. And I'd kind of put that in the awareness bucket too, as more lived experience, more people started talking about the autistic experience, of like, "Hey, I do this thing." And this is what stimming can look like. Yeah, because so much of it was the stereotypical, like, hand flapping. Like, that's the one people love to use, like, hand flapping.
DONNA HENDERSON: You don't flap your arms? You can't be autistic, yeah.
MEGAN NEFF: Yep, yep, yeah. And special interest would be another one of, like, the ones that culturally blend in or are socially acceptable, awareness that, yeah, like, an intense interest in psychology or social justice. Like, that can only be a special interest. It doesn't have to be obscure. Like, it doesn't have to be bizarre, is the word that's often used.
DONNA HENDERSON: Oh, this might have been a change in the new DSM-II, in the 2013, from overtly atypical interest to either atypical or intense. Do you know that is true?
MEGAN NEFF: I don't know it off the top of my head, but it feels right. And I want to know now, but it feels right.
DONNA HENDERSON: Me too. I'm going to look it up later and I'll let you know.
MEGAN NEFF: Even with that update, a lot of clinicians will still, if it's not "bizarre," they'll miss the ones that are, like, atypical in intensity, but not content, which also, again, that's weird of like, who gets to decide what's bizarre and what's not?
DONNA HENDERSON: I know, I know. I had a whole debate about this with a colleague once, because I had an eight-year-old who I was sure was autistic, and I was going through the criteria, and he had an interest in opera. And I thought that was atypical for, not an eight-year-old, an eighth grader, or for an eighth-grade boy. I never met an eighth-grade boy who was into opera. And her argument was, "Lots of people are into opera. There's nothing atypical about that."
Which is true, but for me, like the context, context is everything. The context is of this boy, he wasn't musical, he didn't play an instrument, his parents weren't into opera, he didn't go to a, like, theater-oriented school. Like, there was nothing about his life that made that made you go like, "Oh yeah, opera, that makes sense." Right?
MEGAN NEFF: Yeah, that's interesting. So, like, for the context of that person's life, is the interest.
DONNA HENDERSON: Right.
MEGAN NEFF: "Bizarre." I like that way of thinking about it. Yeah, yeah, interesting.
DONNA HENDERSON: And, I mean, I don't use the word bizarre.
MEGAN NEFF: Yeah, I'm using a lot of air quotes here on it, because it would be like the pathologized way of looking at it.
DONNA HENDERSON: Got it, makes sense.
MEGAN NEFF: Or atypical.
DONNA HENDERSON: So, should we talk about this whole other category of increased prevalence rates that-
MEGAN NEFF: Yes.
DONNA HENDERSON: Do you want to bring one up? Go ahead if you have one.
MEGAN NEFF: Next on my list is more screening. But I don't know, did you have one in mind?
DONNA HENDERSON: I did, but I can wait. Yeah, definitely more screening. What were you thinking about there?
MEGAN NEFF: Well, again, when I look at that chart, specifically, 2000 to 2020, some things that come to mind is like in 20… I think it was published in 2007, but I think it kind of went into effect in 2006 where the American Pediatric Association recommended routine screening for children. And then, that's one of the points where we start seeing a big spike. So, just implementing routine screening is huge.
And then, I'm not as like fluent on Education Policy, but my understanding also is that there were some changes in, like, kind of how children could access supports where there was more incentive to get an autism diagnosis for families, because of the supports that could be offered through that. And so, just from an incentive's perspective for families, there's also more education supports to access if you have that diagnosis. And so, I think about, yeah, the screening, and then, like, education shifts, that just made it much more likely that we'd be catching autistic children.
DONNA HENDERSON: Yeah, yeah. No, you're exactly right. I was wondering about that too. I didn't remember the exact year when the American Academy of Pediatrics started that, but it definitely-
MEGAN NEFF: Well, I don't recite-
DONNA HENDERSON: …sounds right.
MEGAN NEFF: I don't recite phone books, but dates of studies, like, stick.
DONNA HENDERSON: Maybe you're not autistic, Megan Anna.
MEGAN NEFF: [INDISCERNIBLE 1:02:23]. Got to rethink my career.
DONNA HENDERSON: Yeah, there you go. You know, it crossed my mind too, as you were saying that, I wonder, too, about insurance companies. And when you know all this nonsense about, you know, you need an autism diagnosis for us to pay for you to have ABA. And of course, everybody needs ABA. And I wonder if there was a little bit of impact there, too, that motivated people to get the diagnosis so that their kids could get ABA. And to be clear, I'm not saying it was-
MEGAN NEFF: Yes.
DONNA HENDERSON: I'm not-
MEGAN NEFF: Yes.
DONNA HENDERSON: …or ABA, right? Yeah.
MEGAN NEFF: Yeah, but that would have been one of those systemic pieces, right?
DONNA HENDERSON: Right.
MEGAN NEFF: Again, there was just so many system pieces that shifted from, especially, 2000 to 2020. Yeah, insurance, screening, yeah. Anything else in the screening bucket that you'd add?
DONNA HENDERSON: I think you hit the big ones. Yeah.
MEGAN NEFF: Yeah. So, what was on your list?
DONNA HENDERSON: So, a few other things. One is, I found myself wondering it, and I think that it has, if everything's just been increasing like crazy. And could we make a chart that shows the autism increases, and the ADHD level increases, and the anxiety level increases, and the depression level. And even things like dyslexia, I wonder, is autism increasing more than everything else? Or is-
MEGAN NEFF: Does that mean autistic people are having sex than-
DONNA HENDERSON: Well, that was a whole other thing we needed to talk about, right? Right?
MEGAN NEFF: Mm-hmm (affirmative), yeah. So-
DONNA HENDERSON: So, they're separate to me.
MEGAN NEFF: Oh, they're separate, okay. So, everything's right, increasing. And when you say everything's increasing, in your mind, are you saying true prevalence is increasing, or diagnosed cases are increasing?
DONNA HENDERSON: I think probably both.
MEGAN NEFF: Okay.
DONNA HENDERSON: I mean, I know kids are more and adults.
MEGAN NEFF: Oh, yeah. That's true.
DONNA HENDERSON: Everybody's more anxious.
MEGAN NEFF: Yeah.
DONNA HENDERSON: I mean, there's so much more anxiety now. There's so much more depression now. There's so much more ADHD now, right? There was a whole article in The New York Times this weekend about, like, the explosion of ADHD. So, part of me wondered, like, so is autism different from all of these other diagnoses, or not really?
MEGAN NEFF: I mean, that's a whole other conversation. But same thing with ADHD, like, we could say there's been an underdiagnosis. And actually, this is something I like about you, Donna, is it's tempting to look at that and be like, "It's not an epidemic, it's better identification. That's typically what I say."
But I typically will have a footnote of like, "And we can't rule out that there is a true increase in true prevalence." And I like that you can hold the nuance of that, of maybe there is true prevalence increasing of all the things.
DONNA HENDERSON: Yeah, I think there may be and this is where we can now bring sex into it, right? So, autistic people in our current culture may have better luck finding each other, finding partners, and procreating like because of-
MEGAN NEFF: Yes.
DONNA HENDERSON: …the rise of technology.
MEGAN NEFF: It's literally what I said in my article of like, because we know the cross neurotype study, like we tend to connect better with each other. And now with dating apps and with digital, like, we can find each other in the mating process. The mating process [INDISCERNIBLE 1:05:44] whereas before, if you were just like, "Well, I'm going to find someone, like, in what, my local community." Or, I don't know how people found, I mean, I guess I found my person in college. But, yeah, it would be so much easier, I imagine, for autistic people to connect, and then to have sex, and then to have babies.
DONNA HENDERSON: Right, absolutely. And, you know, when I was young and dating, before technology, you had to go out there in the world and spontaneously talk to people, and connect quickly enough and well enough to then continue on and build a relationship, which is harder for autistic people than for normal autistic people.
MEGAN NEFF: Yeah, it's terrible. That's terrible to me. Everything you just described, I was like, "Why would you do that?"
DONNA HENDERSON: Right? Yeah, and then, separately, the rise of technology in general has given a lot of autistic people like, think Bill Gates, jobs, careers.
MEGAN NEFF: Oh, my gosh, yeah.
DONNA HENDERSON: And like that lead to and that sort of that full-on success in life that is more likely to potentially lead you to becoming a parent and having a family, right? So, I think there's that piece of it, too.
MEGAN NEFF: Yeah, I think about this all the time with like social disability model and like, I run a pretty successful business, I have, like, four employees, three of whom are AuDHD, and none of our jobs would exist without the internet as it is, yeah.
DONNA HENDERSON: Right, yeah.
MEGAN NEFF: Yeah, that's a huge shift, but shift in like it can create some financial stability, which I don't know that that's actually correlated with having more kids necessarily. But yeah, yeah.
DONNA HENDERSON: Yeah, yeah. I sure don't know. I certainly haven't seen any research on it. It just feels like there might be. I just remember at one point hearing that there was concern because there was so much autism being diagnosed in Silicon Valley that they thought like there was some fish in the water there. We were all like, "No, y'all are autistic, and you're having babies, and it's all okay."
MEGAN NEFF: Well, and I know that there's some pushback on this language of broader autistic phenotype. But then, again, especially if you've got two tech people who are on that broader autistic phenotype, they're going to have children who, I think, would probably be more classically autistic or stereotypically autistic. And so, absolutely, that's happening.
I think Steve Silberman did such a good job outlining that in NeuroTribes. I think it was in his book that the number one medical field, of like, having autistic kids was actually the medical field. And then, it was maybe engineering, and then tech, which is really interesting too, to think through, where are the broader autistic phenotype folks? And I don't want to quote it quite that confidently, but it was interesting. He had some data in there about the fields of like the parents of autistic kids.
DONNA HENDERSON: Oh, that is interesting. Megan Anna, you and I could just make a living coming up with dissertation topics. That would be such an interesting dissertation, because I'm also thinking lawyers and college professors, right? Yeah.
MEGAN NEFF: Yeah, yeah. So, yeah, we're having babies. That's a huge one. We're connecting because of the digital world. Speaking of digital, I think that's its own point of just the internet has changed everything in regards to lived experience. And then, we've connected as an autistic culture and community, and now we see ourselves recognized in each other. And that's just lifted the bar of awareness because A, we're connecting, B, we've really created some autistic culture, which in return, like that's how we know things like, well, stimming can look like this or like that. And so, that's been so huge from an awareness perspective. And then, also, busting some of those myths around autism is a big, bad, terrible thing. So, the internet.
And again, if we look at that 2000 to 2020, what, like iPhones was 2010? And I feel like we've been living in the digital age the last 20 years, and then the social media age, and it's just changed everything.
DONNA HENDERSON: Yeah, well said, well summarized, for sure, yeah. And Megan Anna I-
MEGAN NEFF: [CROSSTALK 1:10:16]-
DONNA HENDERSON: Oh, go ahead, no. I want to hear it.
MEGAN NEFF: Was just going to say, I do have one more point that I want to make sure and get to. But do it.
DONNA HENDERSON: I was going to say, like, I think we solved it.
MEGAN NEFF: Better recognition of underrepresented groups. So, for example, the research that's looked into autistic women has been huge, but then, also, BIPOC, and gender queer, and trans.
I don't know what's the most recent CDC, but I feel like the one that was one in 36 was one of the most encouraging for catching black children. Like, it was like, can't remember the exact rates, but the gap had lessened quite a bit. I think we know still, especially in Latin X populations, this is still very under identified. But especially with BIPOC children, we're getting a lot, lot, lot better, historically, often like conduct disorders or oppositional defiant disorder.
There's some great research. I'm going to synthesize it this Friday, but I think on average, it takes what? Like three years longer than a white child to get a diagnosis. And that research, it goes like 2007, kind of early 2000s. There's a huge discrepancy there.
And then, of course, autistic girls. Like, especially, girls that do not have a co-occurring intellectual disability, more numbers, because my brain is fun in that way.
Again, I think I might have first learned this from you, and this was early 2000s or late 1990s, where autistic girls with co-occurring intellectual disabilities, the prevalence was two to one, two autistic boys to one, but then, without a co-occurring intellectual disability, I think they were using 80 or above. It jumps to nine to one, meaning like it would make no sense for prevalence to actually shift that much. It just means we didn't know how to catch those girls. And so, that's been a huge shift in the, we're getting better at identifying anyone who's not a white cis boy with very stereotypical traits.
DONNA HENDERSON: Right, right. Yeah, again, really, really well summarized. I don't know that I have anything to add to it, except, yep, that's all true. And then, if somebody is in multiple minority groups. So, if you're a black trans female, right, you know, it's even harder to identify, for sure.
MEGAN NEFF: Absolutely, yeah, absolutely. And I always, again, this is a footnote I like to add, there's still plenty of white cis men who also are undiagnosed, even with stereotypical traits, because, again, of how much has changed diagnostically, and awareness, and screening.
DONNA HENDERSON: Right, right. I mean, I saw a boy this week, white cis boy, who had been seen on and off throughout his life and never diagnosed with autism. And I thought it was going to be like a really challenging case to figure out. And I mean, within five minutes of meeting him, he exhibited really clear, unambiguous autistic traits.
MEGAN NEFF: Yes.
DONNA HENDERSON: And going through it with his parents, it was clear that his clinicians weren't comfortable with autism in the past, his parents were uncomfortable with autism in the past. They overtly said to me, "We see this now, and we're comfortable, and we want this diagnosis. It's useful to see him through this lens. We didn't feel that way 10 years ago. We would have absolutely pushed back against this 10 years ago." And they were saying, "We think that's part of the reason clinicians didn't diagnose it." None of the adults in the room were comfortable. So, I guess I'm just reiterating what I said before, but even for a white boy.
MEGAN NEFF: That's so beautiful, and it comes full circle of, this is where I really I'm so grateful for the autistic community of the awareness work. And by awareness work, I also mean the, like, movement toward bringing forth affirming narratives of autism, that is impacting clinicians, it's impacting parents, because they're more likely to say, "Yep, I'm willing to look at this." And that is a huge driving force in the increase is that there is now a culture and a community who's saying, this is an experience that many of us have, and it is okay, and this is a word we're allowed to say.
DONNA HENDERSON: Yeah, yeah. 100%. I think that's so beautifully said. I go back to this experience I had in graduate school in 1987 maybe, where I thought I had never met a gay person before. Obviously, I had, but nobody ever talked about it back then. And one of my professors said that he was gay. He came out to our class and very casual. Like, it wasn't a big deal. He was like, "By the way, here's the deal." And it was the first moment of realizing, "Oh, they're all around me." I had no idea.
And it's the same thing with autism. And every time an autistic person comes out and says, "Oh, and by the way, I'm autistic." It raises everybody's awareness, not just that it's everywhere, but that there's a million different ways it can look, right?
MEGAN NEFF: Like, that's literally why I came out. Like, I had no idea what was going to happen when I came out as autistic and, like, professionally, impact it would have. But I was like, I just need to do this. I need people to know there's, like, autistic psychologists out here.
And Devin Price talks about this really beautifully in the first autistic unmasking book of, I can't remember the exact quote, but like, visibility is advocacy. And partly, for those of us for whom we can more safely be visible. So, as a white human with a lot of, like, so much privilege, right? It is so much safer for me to be visible, and so the ability for me to do that, it also like raises the safety for everyone. So, those of us for whom we can more safely be visible, it is really powerful advocacy.
DONNA HENDERSON: Well, I know I speak for countless people, thousands of people, that your work is so appreciated, not only your intellectual work, which is massive, Megan Anna, but your personal work, understanding yourself, understanding your own experience. And then, sharing that with the world. You make a huge difference. And we all appreciate it.
MEGAN NEFF: Well, thank you. And now I got a hot potato pivot, because that [INDISCERNIBLE 1:17:00] taken. Actually, I'm going to try to take that in. Thank you. I appreciate that.
DONNA HENDERSON: Good, good. I feel like we're at that stopping point. [CROSSTALK 1:17:15]-
MEGAN NEFF: Yeah, I think we are. And we've also talked for a long time. And so, again, we don't yet know where we're going to release this, or what we're going to do with this, but I'm really glad we had this conversation. For one, I've just enjoyed it, but also, I think I love your brain so much, and especially, like, walking through the DSM changes, that was amazing. And just being able to contextualize this conversation with you. I've really enjoyed this.
DONNA HENDERSON: Me too, 100%, always. Let's do this again.
