JOSH: Hello, and welcome to Clearer Thinking with Spencer Greenberg, the podcast about ideas that matter. I'm Josh Castle, the producer of the podcast, and I'm so glad you've joined us today. In this episode, Spencer speaks with Megan Neff about the diagnostic criteria and experience of autism, cognitive versus affective empathy, and the rise in mental health treatment and discourse.

MEGAN: So Atypical, that show having Sheldon from The Big Bang Theory. These were the images in my head of what autism looked like. I'm someone who's kind of deeply relational and quite empathetic. I feel people's emotions pretty intensely, and that didn't add up to the story I had in my head about what autism looked like.

SPENCER: Megan, welcome.

MEGAN: Thank you. It's good to be here.

SPENCER: It's good to have you. Are you autistic?

MEGAN: Yeah.

SPENCER: How did you come to find that out?

MEGAN: I discovered it. This is kind of a common story now for the lost generation, which is the child to parent pipeline. I discovered it after we were exploring this for one of my children. The thing that's a little bit unique about my story is I was also, at that time, graduating with a doctorate in psychology, and I was quite shocked when I started learning about autism in girls and autism in women. I discovered pretty quickly that all of a sudden, my life made sense, and my training to become a psychologist did not prepare me to see that or learn that. That's where I entered the conversation.

SPENCER: When you first got your result that you might be autistic, did you believe it?

MEGAN: That's complex. There are kind of two snapshots in my story I could tell. One snapshot would go back to 2017, which was my first year in the doctoral program. Part of training to become a psychologist involves learning how to do personality assessments. In doing that, we first do them on ourselves. I was looking at the printout of an assessment that I had received, and one of the recommendations on there was to look into the possibility of autism. When I saw that, I scoffed at it and disregarded it. I was like, "There's no way I'm autistic." I also felt negative feelings toward that word; seeing that on the paper made me uncomfortable. Back in 2017, I didn't believe it, and I didn't even consider it again. Now fast forward to 2021 when we started exploring this for my daughter. At that point, I had been doing depth work, psychoanalytic and psychodynamic therapy for a long time, and I had been uncovering that there were a lot of pieces of my life that didn't make sense. It didn't line up. At that point, when I started diving into autism in girls and autism in women, I was very open to it because all of a sudden there was this lens that opened up that explained so much of my life that had been a mystery up to that point. At that point, I was receptive to the idea, and I actually self-identified, but I self-identified as a psychologist who had access to a lot of psychological information about myself, and then I went through the process. By the time I went through the formal process, I had already come to embrace this about myself.

SPENCER: Why do you think that you first wrote it off when you first got the test? Do you think you had certain stereotypes of what it means to be autistic that made you think you don't have that?

MEGAN: Absolutely. Our cultural archetype of autism is very narrow. It tends to be men, and not just men, but white cis men, that have a very stereotypical presentation and a standard range of interests. I've actually worked with and met many men who also don't see themselves in the stereotype. It's not as simple as women and genderqueer people not seeing themselves in the archetype, because there are actually a lot of men. Maybe they're hyper empathetic, or their special interest is sports or work, so they often will also not see themselves in the stereotype. So Atypical, that show having Sheldon from The Big Bang Theory. These were the images in my head of what autism looked like. I'm someone who's kind of deeply relational and quite empathetic. I feel people's emotions pretty intensely, and that didn't add up to the story I had in my head about what autism looked like.

SPENCER: The empathy piece is really interesting. One more thing we can talk about is cognitive empathy, and another is affective empathy. What are the differences between those?

MEGAN: Yeah, so cognitive empathy would be more of that perspective-taking ability to perceive, okay, this is this person's experience. Being able to get into the perspective of another person. Affective empathy is more on that felt emotional level of that felt experience.

SPENCER: My understanding is that sometimes autistic people are thought to be lacking in affective empathy, so not having the emotions of empathy, but that this might be a misunderstanding, because sometimes they don't realize what someone else's situation is. They may not be reading that someone is needing empathy at this moment, or that someone is sad or suffering, et cetera. What do you think about that?

MEGAN: So I think what I'm more familiar with is actually the flipped, where it's sometimes talked about that autistic people have less cognitive empathy but can have similar levels of affective empathy.

SPENCER: Okay, so just to clarify that. So what I mean is, I think people sometimes misinterpret it as though autistic people have less affective empathy because they confuse the lack of cognitive empathy for the lack of affective empathy.

MEGAN: Got it, that does make sense, yes. So that does happen a lot. So when people say things like autistic people don't have empathy, we've got to get a lot more nuanced with it. So it might be true that we do struggle a little bit more with perspective taking, although that is actually also on the table around the whole theory of mind. The theory of autism has had a lot of critiques, understandably, and there's actually an autistic sociologist who put out the idea of the double empathy problem, that it's not that autistic people struggle to have empathy; it's a two-way street. So in the same way that you might struggle to experience my frame of mind, I'm going to struggle to experience your frame of mind because we have very different neurological makeups. Even the question around cognitive empathy is also kind of on the table being reconsidered. Now, I would say I do think there is some research pointing toward the fact that perspective taking is a little bit harder for us. I will say for myself, perspective taking is a little bit harder for me. I do what I call long-form math that I do to get perspective taking. So there's some debate around that, but absolutely the affective empathy piece is something people will often assume that because the perspective taking piece is harder, that that also means lower affective empathy. There is — I don't know how much of a research dump you want — also research that suggests and has been able to tease out that when you factor in the alexithymia — so alexithymia is difficulty identifying and experiencing our emotions — about one in 10 people in society have this. It's a personality trait; it's not something you diagnose.

SPENCER: It's referring to your own emotion, right? So it's about self-perception, not about other people.

MEGAN: Yeah. But when you struggle to perceive your own emotions, it means you're also going to struggle to have empathy toward others, because you don't have a reference point as much. Alexithymia is tied to lower empathy. About 50% of autistic people have alexithymia, and sometimes severe alexithymia. When they've looked at studies that have teased out autistic people with alexithymia and autistic people without, we see that it is actually the alexithymia that influences the empathy, not the autism.

SPENCER: That's very interesting. It is true, though, that on certain specific tasks, autistic people struggle more, such as given a scenario saying, "What did this person intend?" when there's a hidden meaning or implied meaning. Is that not true?

MEGAN: That's absolutely true. The way neurotypicals communicate is really strange. There's a secret language that you often use that we are much more likely to miss. There's this idea of context insensitivity, or it's sometimes referred to as context blindness, but I prefer the term context insensitivity, where we don't subcortically pick up some of the context in the same way that non-autistic or allistic brains do. We might analytically try to decode what you're saying, but if there's a double meaning, many of us will miss it unless we've learned how to decode it. It can be really confusing. For me, the opposite will sometimes be true; I will over-read into people's statements because I learned at some point that people often don't mean what they say and say what they mean. If someone gives me a compliment, I have to start decoding it: Are you actually critiquing me? Am I missing that? It can be really confusing because our communication style is very direct, kind of matter-of-fact. We say what we mean. I mean what I say. And that is not the way that the world mostly operates.

SPENCER: Yeah, I've heard autistic people express a lot of frustration around the way non-autistic people use innuendos and kind of beat around the bush and imply things. They're like, "Can you just say the thing? Why don't you just tell me what you want? It'd be so much easier."

MEGAN: And I think this is why we actually make really good comics, because we can get up on stage and we can say the thing, and people laugh. When we say the thing, I think everyone breathes a little bit. It depends on what the thing is, but for a lot of us, it can bring a collective sigh of relief when someone is willing to say the thing.

SPENCER: I did an episode quite a while ago about directness and communication and how there can be trade-offs. By being overly direct, you can sometimes, for example, hurt people's feelings or give information that really may not be ideal to express. If someone says, "Hey, you want to come over to my party on Tuesday?" and you really don't want to go, non-autistic people are going to be very tempted to say something that doesn't hint at their disinterest, like, "Oh, I'm just busy that night," or whatever. I'm wondering, do you feel that sometimes that expression of being very forthright can actually get you in trouble?

MEGAN: Oh, for sure, definitely, especially in the workplace. Before I knew I was autistic, I look back and see that I was over-explaining, giving more information than I needed to, and providing more context than necessary. I was especially challenged when navigating systems where there are a lot of cover-your-own-protection type things where you don't say things directly. That definitely got me in trouble a few times, and I was always confused as to why. I value authenticity and honesty quite a lot, so navigating systems and workplaces has always been really difficult for me.

SPENCER: Yeah, I imagine corporate politics must be quite difficult.

MEGAN: Yeah, I don't do it.

SPENCER: The behavior at work is one example where getting the label of, "Oh, I'm autistic," helped you understand what was going on. And I'm wondering, are there other cases you can think about in your past that suddenly made sense when you got that diagnosis?

MEGAN: So much, it's hard to know where to start. I think I'll start with my day-to-day experience of self and relationships. Part of what I had been working through in therapy at that point was this feeling of I just can't get into my experience. I can't get into my life. And I've had that pervasive experience since I was very, very young.

SPENCER: What does that mean? "I can't get into an experience?"

MEGAN: Yeah. So it feels like I'm disconnected from my experience, and most specifically, when I am out of the house and around people, and what I can now say is when I'm sensory overloaded. But I didn't have that language. I didn't have that understanding. So even as a little girl, I remember going to the grocery store, and I would tug at my mom, and I said, "Mom, I feel like I'm in a dream. Is this a dream?" Looking back, I can tell that what I was describing was low-grade dissociation. So much of my life, the moments in life that you're supposed to treasure and enjoy, your wedding day or having a child, these big days or graduations, were the times when I would feel the most disconnected from myself and from the people around me. Struggling to get into those experiences has always been a pain point for me, and it wasn't until I understood I was autistic and that I have pretty significant sensory processing differences that mean if I'm in a room of more than four people, if I'm in an environment that's not sensory controlled, I will sensory shut down. That's low-grade dissociation, and I get very disconnected from myself, from others, and from my experience. I didn't understand that. I didn't understand why I couldn't get into my life, and that was a huge realization to understand from a sensory lens, that it's because you're sensory overloaded and you're shut down, and you're dissociated as you move through the world. So that would be one. There are others, but I'll pause there. That would be one of the things.

SPENCER: No, that's a great example. So we've kind of touched on the emotional aspects, and we've touched on sensory aspects. Are there any other very different aspects of your experience that clicked in once you got the diagnosis?

MEGAN: I would say relationally, at times, I have had deep, intense friendships, but then I struggle to maintain those friendships. Groups have always been hard for me, and I never understood why. Moving through middle school or high school, I'd be on the sports team, I'd be in these groups, and I would see this thing happen where the others in the group would just go deeper, and I'd be kind of stuck on the outside. Not being able to cultivate the sorts of relationships that I desired has also been a theme throughout my life, just feeling slightly out of sync and out of rhythm with the people around me, but not understanding why. There was a lot of grief in that, and having a lens for that has been huge as well. I also think my relationship to my interests — my most autistic trait is special interests and monotropic focus, where I go into what my spouse calls the vortex, and I can just spend hours and hours in there. There's a lot of intensity around that, which I channeled into academia. First, I channeled into religion when I was religious, and then I channeled into academia. It's kind of phrased in those cultures, but it can make relationships a little challenging as well when all you want to do is connect around your interests. My relationship to interest and desire is also something that all of a sudden made a lot more sense.

SPENCER: Going back to the relational for a moment. Do you know why, in retrospect, you had trouble clicking with people in the same way that others did? Do you think it was that you were missing social cues or something else?

MEGAN: There's definitely some missing of social cues, as my spouse will point out to me sometimes I'm not even aware of, and he'll be like, "Yeah, that was a weird thing you did." "Oh, okay." So definitely a bit of missing social cues was in the mix. I was someone who learned to mask probably at a young age; I was a little social scientist. I would study people and notice what worked for them. I wasn't showing up authentically socially, and it's hard to connect with people when you're not showing up authentically. I did okay in places that had structure. I think that's why I did a lot of school and grad school. I kept going back to school because it gave me a really structured environment, and we connected around ideas, not the social-based conversation of, "Tell me about yourself. Who are you? How was your weekend?" All of that obnoxious stuff. In very specific environments like academia, I was able to do okay. But outside of that, when socializing becomes more fluid, that's where I would start to struggle because things like small talk, spontaneous socializing, where you don't know what to expect, or there's not a purpose to the conversation, that sort of communication has always been so much harder for me. The way I accommodate that is if I can pivot back to a topic of interest, that's how I can get comfortable. But especially for women, there's a lot of social-based interaction around questions about who you are and your family, and that kind of conversation has never felt very comfortable to me.

SPENCER: Now, on the special interest front, the stereotype would be being obsessed with trains and memorizing train schedules and things like that. I imagine there's a much more diverse kind of representation of special interests that occurs. How would you describe what a special interest is and the different ways it tends to manifest?

MEGAN: This is a tricky one because everyone has interests, but the intensity of it in autistic people is pretty unique. I think of it as a sort of lens; when I have a special interest, I am seeing the whole world through that lens. Maybe my spouse is talking about European football, and I'll somehow connect it back to neurodivergence and autism, and I'll be like, "Oh, well, that connects to this idea," partly because that is the lens I have of the world in almost every interaction, it's just there. For autistic people, special interests tend to be deeply connected to our identity; they're very soothing. We'll often, even if we aren't engaged in the thing, be thinking about the thing, daydreaming, or thinking about when we can get back to that thing and back to that learning. The intensity of it is what is unique. When we're doing assessments, one of the things we look at is impact; is it impacting things like your sleep, or are you kind of closing out other people in order to spend more time with your interests? Interests can vary a lot, and that goes back to that stereotype. The stereotype of autism is that these are bizarre interests, but in the diagnostic criteria, it's either atypical in the content of it or in intensity. The folks who have a special interest that culturally blends in but is really intense are some of the people most likely to be missed, especially if we make a career out of it, because that's not as obvious if we've made a career out of our special interest.

SPENCER: I think the point you made about it kind of bleeding into other things is really interesting, "Everyone has interests." But it sounds like for you, or for autistic people broadly, it tends to be a lens through which they view the rest of the world, and maybe that's not so common for non-autistic people.

MEGAN: Yeah, that's how I would describe my experience. Other autistic people I've talked to have connected with that. I'm not sure if that's every autistic person's experience, but yeah, it's the ecosystem, and then every piece of information or idea that comes in connects to part of my ecosystem, because that's how I'm understanding the world at that moment.

SPENCER: Let's talk about the DSM-5 diagnostic criteria. It seems like there are two large umbrella pillars, and then there are different items underneath that. The first pillar is persistent deficits in social communication and social interaction, and the first item underneath that would be deficits in social-emotional reciprocity. What does that mean in lay terms?

MEGAN: Absolutely. Criteria A is all about social communication. The reciprocity piece can show up in a lot of different ways. For example, the back-and-forth flow of a conversation, especially in small talk, is going to be harder versus if it's structured. One way this can show up is that groups can be really hard, and part of that has to do with a lot of us being slower processors. If I'm in a group context, by the time I've absorbed what is happening and put a thought together to respond, the conversation's already four steps ahead. That's part of what can be challenging, but just knowing how to enter the fluidity of a group conversation. You might hear a lot of autistic people say, "I do find one-on-one, but once it's more than one-on-one, it gets really hard." That's one way reciprocity can show up, also through things like introductions, saying hi and saying bye, and compliments. Compliments are so awkward for me, and knowing that if you compliment me, I'm supposed to compliment you back. A lot of us have learned these rules. I've learned if someone compliments me, there's an expectation I compliment them back, and that we're doing some kind of weird social bid dance there. But that's not necessarily an intuitive response I would have. So reciprocity shows up in a lot of ways.

SPENCER: It's funny you mentioned reciprocity because when I did the episode with someone with narcissism, who has NPD, he was describing how he uses that fact. He'll give someone a compliment knowing that it'll cause them to give a compliment back, which raises his ego. So it's just fascinating.

MEGAN: That is interesting, because I think many autistic people, not all, have sensitivity around anything that feels manipulative or demanding. If someone gives me a compliment, I actually am annoyed I have to compliment them back, because I am like, "I see what you're doing, and now I have to do this thing. Now we're doing some weird social dance that I didn't even want your compliment because it made me blush, because I don't like being perceived." It's interesting, because I actually think autistic people and folks with NPD sometimes pair up, and that would be a cruel dynamic if the person with NPD is eliciting compliments from an autistic person.

SPENCER: It's a little bit like you're seeing through the matrix. Instead of just going with the flow, like non-autistic people do, where they're just sort of vibing, you're seeing what's happening a little more explicitly, which can really change the nature of an interaction if you're aware of what's happening. Think about an example of social hierarchy. Maybe there's a really rich person and everyone's kissing up to them. Being too aware of that kind of makes it very awkward and weird.

MEGAN: Totally. It makes me anxious. I want to be like, "Y'all, do you see what's happening here?" And I'll do that. When I worked as a therapist, I was a very interpersonal therapist where I'm breaking into the meta of what's happening here, and that is where I get psychological safety in a conversation, when we can break through the performance and talk about what's actually happening right now. Why are we complimenting each other? Why are we talking about this thing?

SPENCER: Okay, so the next item is deficits in nonverbal communicative behaviors. What does that mean in lay terms?

MEGAN: Yeah, so that can be both expressive or receptive, meaning both in how we express our nonverbal communication and how we receive and interpret other people's. For example, a tendency to have a flat affect or even sometimes a disconnection between what we're saying and what our bodies are doing. I spent a lot of my childhood and adolescence looking into the mirror, practicing facial expressions. Left to my own devices, my face is very flat, and I've learned how to perform interest or perform emotion, so that would be the expressive part of this piece. The receptive part would be being able to intuitively understand other people's nonverbals. There are people who mask and who are analytical. Through their prefrontal cortex, they're analytically doing this. For example, I've learned when someone crosses their arms, it means a certain thing. When someone is doing something with their eyes, it means a certain thing, but it's an exhausting process because you're having to use your prefrontal cortex to do all that. There's a test online, I'm blanking on the name of it, but it's the Eyes Test, where you look through it and guess the emotion. For me, I can kind of analytically sort it. My spouse did it, and he said, "I just feel what they're feeling." I have no reference point for what that would be.

SPENCER: Okay. And then the last item here is deficits in developing, maintaining, and understanding relationships.

MEGAN: That gets into just relationships are complex. There's a lot to navigate, including the bid for connection, like remembering to text someone on their birthday or understanding that it's important to some people, or knowing whether this is an acquaintance or a friendship, or how to navigate conflict. Often, something that can happen for many autistic people, going back to the communication aspect of being literal, is that we might do something that's offensive to someone, but we don't understand that, which can lead to a rupture. Many humans feel uncomfortable around conflict, so they may not offer honest feedback. They might say, "Oh, I'm busy. I can't come to your party." But autistic people may not pick that up. There can also be a history of painful endings to friendships that don't make sense to us. There's a lot of social energy that goes into maintaining friendships, and many of us have lower social batteries. To some degree, we might have less social motivation as well. For me, I have fairly low social motivation. I'm pretty happy in my own world. The combination of having lower social motivation and lower social energy, along with things that are important to other people not necessarily being important to me, like remembering to text people on birthdays or going to weddings, can make relationships tricky.

SPENCER: So for that first pillar criteria, where does masking come in?

MEGAN: Yeah, so that's a great question, and that's a big change that happened from the DSM-IV to the DSM-5 is that they included that a person might mask or camouflage these. One of the reasons we're identifying so many more people is that, especially those with average to above average IQs, they're often doing that, "Stand back, let me analyze, and then I'm gonna move through social space, using their prefrontal cortex, and learn how to do small talk. I'm gonna have scripts." For me, I would practice conversations for hours just to get more fluid with it. Everything we just walked through might not be observable to someone who's just looking at someone's behavior. You have to look into the person's internal experience to get a sense of how hard they are working to move through that small talk or to engage socially with another person. Masking is a huge piece when we look at criteria A because a person might not "look autistic" in the classic sense.

SPENCER: This is reminding me of another episode we did on a completely different type of neuroatypicality, which was on ASPD, antisocial personality disorder, colloquially known as being a sociopath. My guest there described how she had to learn lots of social behaviors that didn't make sense to her naturally. She didn't have them intuitively, so she had to study people and figure out how to act, even if it didn't really make sense to her. Eventually, she became good enough at it that it would prevent her from sticking out and from people realizing that she's not like them.

MEGAN: That sounds identical to autistic masking. That's exactly what it is.

SPENCER: It's interesting how it's the same behavior, but it's born out of really different types of brain differences. I don't think that sociopaths and autistic people really have that much in common in terms of what's going on, but they both are different from the mainstream and have to learn this behavior to fit in.

MEGAN: Yeah. They both have to perform a certain way to fit in.

SPENCER: This brings us to the second pillar, or criteria B, of the DSM criteria, which is restricted repetitive patterns of behavior, interests, or activities. The first one underneath that is stereotyped or repetitive motor movements.

MEGAN: Yes, that's referring to things like stimming or repetitive use. Repetition is really soothing for us. Stimming would be repetitively moving our bodies in a certain way. The stereotypical thing people think of is hand flapping, but it can look a lot of different ways, like pacing, or it can be, especially if we're masking, it might be quieter. We might have adjusted with quieter stims. It can also be auditory stimming, like I'll listen to the same song on repeat often for a week or two on end. That's actually a form of stimming, and it's because my brain knows exactly what to expect when I'm doing that repetition. It could also look like rereading, and this also connects to special interests, but it could look like rereading the same book or rewatching the same film because, again, that predictability is so soothing for us. It could also look like building out collections or organizing. It is so soothing to build out collections of things, the systematizing, which we talked about before we started recording that you also like systematizing. It's getting a lot of soothing through systematizing.

SPENCER: What does it feel like when engaged in repetitive motor movements? Is it lower anxiety? Does it feel pleasant or something else?

MEGAN: Both. There are different kinds of stimming. When I'm watching a stressful movie or show, I will do hand stimming. It's a way of managing anxiety and excitement. When I'm happy, I will often stim as well, and that feels delightful and soothing. When I'm anxious, I'll sometimes stim as a way to relieve stress; that's when I'll do a lot of my pacing to relieve excess stress and anxiety. Stimming can have a lot of different emotional connections. It can be excitement, fear, or a way of releasing anxiety. When I am sensory overloaded, I will want to stim more. I want to sway because part of what we're doing with the repetitive motor movement is helping to block out the unexpected sensory experience. We're creating a predictable sensory feedback loop for ourselves, which is why it's soothing. This is also part of why masking can be detrimental; we're not accessing the things that would actually soothe us and support us when we're navigating overwhelming sensory environments.

SPENCER: Interesting. I didn't realize that it was engaged in so many different emotions. I thought it was more like a stress reliever. That's fascinating. It sounds like it's more of a way of managing a variety of different emotions.

MEGAN: Yeah, absolutely.

SPENCER: The next item is insistence on sameness, inflexible adherence to routines or ritualized patterns.

MEGAN: Yeah. And I really like how Dr. Donna Henderson and Sarah Wayland in their book, Is This Autism, talk about it as islands of inflexibility. People often assume that if you're autistic, you'll be inflexible in all areas of your life, but it's better to look for islands of inflexibility. This could show up as all-or-nothing thinking; it could show up as having a lot of attachment to a very specific way of seeing the world or values around, for example, social justice or justice sensitivity. Maybe it could show up as, "It's really hard for me to be friends with people who have a different political view than me." So it could show up ideologically. It can show up in our routine. Unexpected changes to our routine can be very anxiety-inducing. For me, it would cause a lot of irritability. Until I understood I was autistic, I just thought I was a terrible person because my friend changed plans and decided to invite another friend to the social event, and I was now super annoyed and irritable. I thought I must be a terrible person for being so annoyed that this second person is here, right? That would be an example of the plans changing and I wasn't prepared for that. It's not because I'm a terrible person; it's because I wasn't expecting that. That sort of thing can create a lot of what feels like irrational irritability in us. Now, when we understand it from an autistic lens, it's like, "Okay, that makes sense. You were preparing for a very specific thing, and the plans changed on you."

SPENCER: And then the last item here is hyper or hypo reactivity to sensory input, or unusual interest in sensory aspects of the environment. We've kind of talked about hypersensitivity, but it's interesting that it can be hypo, like less sensitivity.

MEGAN: Yeah, absolutely. This research is a little mixed, but there's some thinking that men might be a little bit more susceptible to hypo and females might be a little bit more susceptible to hypersensitivity. Hypo would be a dulled experience. If hyper is like not having enough of a filter, like a brain filter, so all the sensory input comes in with a lot of intensity, hypo would be like having too much of a filter. You need to listen to the music louder to experience it, or you need more force to feel the handshake, or more flavor in the food to experience it. That can create different kinds of problems. For example, maybe this person is prone to eating food that's gone bad and they don't realize it's gone bad because their taste is less sensitive, or their smell is less sensitive. They could have a really high pain tolerance and not go to the doctor until the infection has gotten really bad because they don't realize how sick they are. There are different challenges that come with being hyper or hypo, and actually, it's a little bit more like a DJ board in the sense that you can be hypersensitive in some senses and hyposensitive in other senses. Getting to understand our sensory profile when you're autistic is pretty complex. There's a lot in the mix.

SPENCER: So would it be inaccurate to say that, on average, autistic people are more sensitive to sensory input, and it's really more accurate to say they just perceive sensory input differently, sometimes more intensely, sometimes less intently?

MEGAN: Yep, probably the second that it's common to have atypical sensory processing and to have less or more. That would probably be more, and hypersensitive gets talked about more, I think, but both can absolutely be true.

SPENCER: So that covers all the symptoms in the DSM, but I do want to mention some of the other aspects of the criteria because I think they're interesting and shed some light on this. The DSM says that these have to show themselves in the early development period. So if you didn't have this when you were a child, but you only developed this as an adult, they actually will not count it as a diagnosis.

MEGAN: Yeah, absolutely. Because it's classified as a neurodevelopmental condition, and that means it's something you're born with. I refer to it as a neurotype. It's my brain style, it's my nervous system. It has to have been present in childhood. Now, if you were in an environment that was really well supported, or if there is masking, then these traits might not be visible in the person's history until a bit later. That is part of what they added when they included masking and camouflaging, is that you might not see these traits until you're in environments where there is more stress. I've heard this idea. I have mixed feelings on it, but I've heard this idea that the DSM criteria is what an autistic person looks like under stress. I think that's slightly too simplistic, but I do find something helpful about that idea. There's so much more to the autistic experience than these checkboxes we just walked through, but this is what will be more visible to other people when we are in sensory overwhelming environments, when we are in burnout. I think that's just a helpful lens to have on this criteria; these things will all be more prevalent when we're struggling.

SPENCER: Yeah, that's a great point. This actually leads me to the next point, which is that in order to get the autistic diagnosis, according to the DSM, these symptoms have to cause clinically significant impairment, meaning that if you had these aspects, but they didn't bother you, then it wouldn't actually be autism according to the diagnosis.

MEGAN: Yeah, and there's a lot there we could unpack, is it possible to have the autistic neurotype but not meet criteria for autism spectrum disorder as it's classified in the DSM? That's an interesting conversation to have, and so that's one thought. The other thought that I often highlight with that piece of the criteria is that it does include things like your emotional impact. For example, for a lot of folks like me who have navigated the world through masking and camouflaging, you might not see a lot of functional impairment at work or in school, but autism behind closed doors looks very different. What you wouldn't see is me laid out on the couch struggling to access speech after a day of being out in the world, or what you don't see is the mental health conditions, the substance abuse that's really common among autistic people who navigate neurotypical spaces. So that's where considering the emotional impact of masking and navigating the world this way, and chronic sensory overwhelm, also becomes part of the consideration when you're considering if an autism diagnosis is warranted.

SPENCER: It's interesting to think about how if an autistic person lived in their ideal environment that's perfectly suited to them, they probably wouldn't meet the diagnostic criteria, because they would be unlikely to have a lot of negative effects from it. At least some of them would fail to meet the diagnostic criteria. But I think that's a difference between how we use these words casually and how the diagnostic criteria work. Casually, we're not going to say someone stops being autistic just because they live in an ideal environment where they're not suffering.

MEGAN: Well, and that also gets to, and this actually is a good point, back to criteria A. A lot of criteria A is not necessarily present when we're with each other, so there's this idea of cross neurotype interactions. If someone is surrounded by autistic people, they're in a very sensory-controlled environment, you would still see the special interest. You'd still see some of the criteria B stuff, but it would be a lot harder to see some of this stuff, especially because of the cross neurotype piece. There's been a study that has looked at this. Can I unpack that study briefly?

SPENCER: Of course, please go ahead.

MEGAN: Okay, so there's been some really interesting studies that have looked at cross neurotype interactions. In one of the studies, they played the telephone game, kind of like you did in childhood, except it was a full story. They had two groups, or three groups. They had an allistic group, so non-autistic, just autistic people, and then they had a cross neurotype group. They had to tell the story to the next person in the mixed neurotype group. It was allistic, autistic, allistic, autistic. Each time the story was being told, it was a cross neurotype interaction. If autism is truly a deficit of social communication, you'd expect the autistic group for the communication to break down the fastest, because replaying a story would be really hard, but that's not what they found. They found that the communication broke down at similar levels for the allistic and autistic groups, and much faster in the cross neurotype group. There have been other studies that paired people based on neurotype and then looked at things like rapport and connection, and found similar results where autistic people can actually connect with each other quite well, but it's the cross neurotype interaction where communication breaks down. If the prevalence rate is what, like 2.7 or 3%, most of our interactions with the world are going to be with non-autistic people. So it's going to seem like, "Well, yeah, the issue is in you," but when we're with each other, we actually communicate. I don't mean that in a global sense; of course, we still have our communication challenges, but it's a lot easier to communicate with each other.

SPENCER: That's fascinating. The last DSM criteria I want to mention is that it says these disturbances are not better explained by intellectual disability. I think people have a lot of different and maybe even conflicting beliefs about the relationship between autism and intellectual ability or disability. On the one hand, I think some people think it's linked to lower IQ or intellectual disability. On the other hand, people talk about autistic savants and think maybe it's actually a sign of being a genius. So what's actually going on with that link?

MEGAN: Yeah, I love that you brought that up because that is a common myth I like to bust, that either people assume it means you have an intellectual disability or that you're a savant. The reality is, as is true of any neurotype, it spans the whole intellectual spectrum. So yes, there are autistic people with co-occurring intellectual disabilities, and historically, they've been identified at higher rates. So it's also hard to say what the true prevalence rate is there. And then there are autistic people who are also savants, and there are autistic people who have very average IQs and autistic people who are also gifted and have high IQs. So just like ADHD, just like autism, just like being neurotypical, it ranges across the whole intellectual spectrum.

SPENCER: I've heard that there can be challenges with intellectual testing or IQ testing of autistic people, where, for example, if you give Raven's matrices, which are essentially these grids where you have to complete the next symbol in the pattern, autistic people often test much better, much higher than with some of the other types of IQ testing. And so it even depends on which IQ test you are leaning on, and you have to be really careful when you're testing an autistic person to choose a test carefully.

MEGAN: Yeah. I'm not fully caught up on all the research around this, but I do know processing speed is often low in autistic people on IQ tests, but then you want to contextualize it because there are different processing speeds. What you just described was a processing speed test, and some of the processing speed tests we seem to be better at than others, and that makes sense to me if you consider that there's so much that goes into processing speed. My processing speed when I'm in an environment where there's a lot going on is going to be a lot slower, or if I need to task switch, because task switching can be harder for our brains, as well as for ADHD brains. So yeah, even things like processing speed get really nuanced. My processing speed is really fast when I'm in my monotropic deep focus, but when my focus is split, that's where my processing speed gets a lot slower. So I would think that that would show up on an IQ test as well, and then also, the literal questioning around a lot of testing throws us off.

SPENCER: What do you mean by that?

MEGAN: Well, even for some of the measurements for autism. Actually, let me ask you this. I'm curious how you'd respond. It's a Friday night. Would you prefer to go to a museum or a party?

SPENCER: Party.

MEGAN: See? Okay, do you want to know what my brain does? How did you get there? First, how did you get there?

SPENCER: I visualized myself at a dance and then I thought about which one I would have more fun at.

MEGAN: Okay, so what my brain goes to is, "Well, what museum? What kind of museum? What kind of party?" And then it's like, "I can't answer that question. I don't have enough context."

SPENCER: You're a survey maker's nightmare, because they're good. It's so interesting because we design a lot of surveys, and regularly, we will get people who have exactly the complaint that you have. They'll be like, "Well, I can't answer this unless I know more information," but it's really fascinating because 95% of people don't even think about that. They just answer it.

MEGAN: So this is context insensitivity, which that word comes from Dr. Donna Henderson. I think this is such a big part of the autistic experience that gets missed. When you don't automatically pick up that context, it's like, "Well, give me the context. Tell me what museum, tell me what party." Your brain, I don't know what it did or how it did it, but how did you pick what museum and what party to imagine yourself in?

SPENCER: Yeah, it's a great question. My system one, my gut, generated a scene where I was imagining some specific museum, although it wasn't actually a real museum; it was just a visualization of some museum. I imagined myself there, and then I imagined myself at some party. So it's kind of picking some kind of prototype. It's not thinking about, "Well, which museum is it? It's just sort of like, here's a prototype of each, and then which should I feel happier at?"

MEGAN: Yeah, that's wild that your brain just did that. That's fascinating.

SPENCER: I don't know if other people's brains would do it differently. I really don't know, but certainly my brain does differently.

MEGAN: Can I ask you another one? What's your favorite book?

SPENCER: Okay, yeah, I got it. I would probably say Thinking, Fast and Slow by Daniel Kahneman.

MEGAN: Would you answer that the same, no matter who asked you that?

SPENCER: I don't think it would depend on that. My internal experience when you ask that question is, I get immediately a flash of an image in my mind. That's the book cover. It just comes to me in one moment. There's no analytical processing that's happening.

MEGAN: So it is a great book, by the way. So that book had a big impact. So that actually feels less context. I asked this of Donna Henderson. Donna Henderson wrote Is This Autism? She's not autistic, though she's ADHD, and we had this conversation around this. She was saying how if a neighbor asked her, she would probably say a fiction book because she understands that there's a bid for social connection there, and that's what she's responding to. But if a colleague asked, she'd probably say a psychology book because of the context of a colleague in a work setting. My brain goes to what's my favorite book? And then I'm like, "Well, break it down for me." If you asked me that, "Are you talking about fiction, nonfiction, psychology? Nonfiction, psychology, give me a bucket." From there, I'll think through, and I would definitely be missing the fact that there's a social bit happening. If someone's asking me that, I wouldn't think to be responding to the social bit; I'd just be responding to factually what's my favorite book. It's going to take me a long time because you need to give me a bucket of what kind of book.

SPENCER: Yeah, that's really interesting. It's funny. There have definitely been a few times in my life where people thought I was autistic, and I think it's because I have a few traits that kind of resemble autism, although I think in most of these traits you describe, I don't think I have them at all. But one of them I do have is that when you just described that, I would never think, "Oh, this is a social bit, and therefore I have to adapt my response. I would just say the same book, no matter what." I also think I tend to be more aware of, "Oh, this is this game that we're doing right now in certain situations that other people don't think that." It's kind of another trait that makes me stand out. Also, you mentioned earlier, like emotional facial expressivity. I think I was always less expressive in my face, and it's something I had to learn to show my feelings more on my face. I had to explicitly learn that, whereas other people kind of do that naturally. So it just reminds me of times where people have been like, "Are you autistic?"

MEGAN: So, have you taken any of the screeners?

SPENCER: I have. Yeah, I don't test high, because I think in most of the traits I don't have them.

MEGAN: Yeah. And that gets to this complex. People often will say, and rightfully so, it's an offensive thing to say, "Everyone's a little bit autistic." That's just not an affirming thing to say. There is a reality that there is a range of autistic traits. You would have perhaps higher autistic traits than other people. We know that folks who are gifted tend to have higher autistic traits. They might not, like you're saying, reach that threshold of what we would call autism. But it's interesting.

SPENCER: So we've talked about these different diagnostic criteria. What would you change about the DSM, if anything, if it were up to you?

MEGAN: Oh, that's a huge, great question. So yeah, I mean, these are very much behavioral checkboxes of what it looks like. It misses the internal experience.

SPENCER: It kind of makes sense, because it's for a clinician who's observing the person. So yeah, I find it deeply interesting to know what the internal experience is like. But maybe you could argue that from the point of view of a clinician, you want the kind of external, more observable things. What do you think?

MEGAN: Oh, that's interesting. I think, yeah, you're right. We need to have something to be able to go off of. I think that what can sometimes happen, though, especially with clinicians, is we get too tied to thinking about it as a behavior and not thinking. And then what often happens is, if someone can do one thing that's not stereotypically autistic, like make eye contact, what has sometimes happened is the clinician will be like, "Well, they can make eye contact, so they can't be autistic." So there's danger. We just need some kind of markers. But there are dangers if we're not thinking deeply about, well, what's that person's experience of eye contact? And so that's where going deeper into the subjective experience becomes really important, because maybe they are making eye contact, but it's really uncomfortable for them, or maybe they're looking right here at my forehead, but because they're trying to perform eye contact. So I would include more about the internal experience. I would include more about autism as a distinct nervous system, and I would definitely highlight the monotropic focus as an aspect of the autistic experience.

SPENCER: Could you explain that monotropic?

MEGAN: Yeah, so monotropic. It's that singular deep focus; vortex is the best word I have for it, where we tend to thrive when we're in that deep, singular focus, and then when we're in environments or situations that force us to split our focus or attention, that can be really stressful for us. It can cause a lot of anxiety to show up because there's a lot of friction around that.

SPENCER: I like your point about getting more at the internal reason behind the behavior, because I've definitely seen people make this mistake where they think someone doesn't have some neurotypicality because their behaviors don't resemble what they'd expect. But if you really understand the motivation, you realize it actually is representative. So going back to the episode with Jacob, the nameless narcissist, we talked about how narcissists can build other people up; they can give you a lot of compliments. They also will often talk about how great the people they know are, and it can come across as very generous, "Oh, they're building other people up all the time." But then if you think about it, "That doesn't seem narcissistic at all." But then if you think about the underlying motivation, you think, "Well, actually, what's happening is it's part of their grandiosity, actually, like the people I know are the best people, and if I give you a compliment, you'll give me one back." And then suddenly you're like, "Ah, if you get too hung up on the behavior, you can really misunderstand what's happening. You have to go to the underlying sort of intentionality behind it."

MEGAN: Yeah, absolutely. That's a great example.

SPENCER: I think another thing that can seem very mysterious to people is, what do these symptoms have to do with each other? If you're sitting on high and just looking down and saying, "What does stimming have to do with having trouble understanding hidden social cues, and what does hyper fixation on certain interests have to do with both of those things?" Is it just ultimately some kind of biological linkages that we don't really understand, or why do this set of things come together?

MEGAN: I think that's the million dollar question people have been asking for a long time, "What is autism?" In the sense that we don't have one single gene we can point to, I do think they are more connected than they are sometimes realized. A lot of it does go back to that monotropic brain style and to sensory processing. For example, even going back to criteria A, all of that makes so much more sense, the social communication stuff, when you think about the nervous system experience of an autistic person. If they're trying to do small talk and they're sensory overloaded, they might be in some sort of shutdown, so they don't have very good access to themselves and monotropic focus. Small talk requires a lot of split focus and a lot of fast processing. When you think about socializing through a monotropic lens, or through a nervous system lens, or through a sensory lens, that makes sense that those social interactions are going to be a lot harder. It is a lot more connected than people often realize. There is a lot of mystery, which is why there have been so many theories around what autism is. Why do these things cluster together? How do they connect?

SPENCER: I have heard people talk about trying to unify autism from a sensory lens and point out things like, for an autistic person, they're more likely to notice certain information and less likely to notice other information. For example, let's say there's a tag on your clothing that's been there for a while. Non-autistic people might stop thinking about it, kind of zone it out, and not notice it anymore. An autistic person might be more likely to keep noticing the tag touching their skin, or in a conversation, an autistic person might be less likely to notice the facial expression, where a non-autistic person may be more honed in on this expression. Do you kind of buy that that could be a unifying lens?

MEGAN: I think I'm skeptical of anything that offers a unifying lens, but I do think there's some truth to the idea that we pay more attention to some things and less to others, and that connects to this idea of bottom-up processing, where we tend to take in our world through the details first and then build up to a unifying theory, which also helps explain how we move through the world, both cognitively and socially. That's a lot of information to be taken in, which also means we're going to miss other things. We're going to miss more of that top-down stuff, but we'll be seeing the details. I definitely think that is a core part of the experience of being autistic that's woven into the fabric of it. I think more about what are some of the core components woven into the fabric, versus one overarching theory that explains it. But maybe that's my hierarchy stuff or demand avoidance. I'm just skeptical of theories that try to encompass all of it.

SPENCER: What's an example with this idea of bottom-up rather than top-down processing?

MEGAN: Yeah, I most feel it when I'm writing or giving a presentation. Giving presentations or writing takes me so long. For example, if you think back to college, I don't know what would be an essay question that a college person might receive, like...

SPENCER: Explain the metaphor of such and such in Jane Eyre?

MEGAN: A top-down thinker is probably going to have a few intuitive theories around that and start there, and then maybe go find research that supports it. A bottom-up thinker is going to be, "Okay, let me go read Jane Eyre." There's going to be a really intensive data collection process around that. When I'm prepping a presentation, I'm going back to all of the original studies and reading them, and from the bottom, I'm finding what the themes of the presentation are going to be. It can make it really hard to finish tasks because the bottom-up processing is so detailed and intensive, and it can be hard to know what context is important and what isn't. Even in this conversation right now, there are times when I'm saying, "Let's talk about this study," or "Let's do this." I'm describing the things versus synthesizing and summarizing, and that's the bottom-up processing of describing it in detail, and then if I keep talking enough, I'll get to the big idea.

SPENCER: It sounds overwhelming, potentially, if you have to start with all the different facts, like, "How do you put this together?" That sounds really difficult to sort of build it out from tons of little facts.

MEGAN: It is overwhelming, and it's part of why learning new systems, and when you join a new workplace, can be a lot. By the time, for example, if an autistic employee enters a new workplace, they have integrated and know that system so well because they've done the bottom-up processing. Even with the presentation I mentioned, I gave a presentation a few months ago and spent so many hours on it, and it was overwhelming. All of those numbers and studies are now pretty locked in my head in a way that I know that information so deeply.

SPENCER: So there's a way in which it might be a benefit too, even if it has its trade-offs.

MEGAN: Yeah, it's both. There are benefits and pros to being bottom-up or top-down. If I'm in the middle of the street and a car is coming at me, I'd really want to be a top-down thinker and be able to move out of the way really fast. It's not that one processing style is good and the other is bad. When we think about neurodiversity, we need a world of both. I'm really thankful for the top-down thinkers in my life who can say, "Megan, that's unnecessary context; cut that."

SPENCER: I think one thing that confuses people about autism is the labeling and how it's changed over time. My understanding is that in the 1960s, the label began to be used, but it actually referred to childhood schizophrenia. Is that right?

MEGAN: Yeah, absolutely. I love walking people through the history of autism, especially since there are a lot of adults who feel understandably upset that they were missed in childhood. I like to give people the historical context because I think it really explains the cultural moment we're in and why there is this whole lost generation of autistic adults. For most of the 20th century, autism was thought of as child-onset schizophrenia, and it wasn't until the DSM-III in the 1980s that it was introduced as infantile autism, but it had to be present before age three. The criteria was very, very strict, and you had to meet all of the criteria. Then in the DSM-IV in 1994, we started introducing different subtypes. Asperger's Disorder was added in, so at that point, we started identifying more autistic people who did not have a co-occurring intellectual disability. It was in the DSM-5 in 2013 that we saw some really big changes. That's where I think four or five diagnoses were collapsed into the autism spectrum disorder diagnosis, and then we saw a lot of criteria changes as well, and a broadening of the diagnostic criteria. The DSM-5 was the most significant diagnostic upgrade, and that's also why someone like me, a child of the 80s and 90s, wouldn't have met the criteria being used back then, but I do meet the criteria that's being used now.

SPENCER: Do you think it's a good thing that Asperger's Disorder is no longer a diagnosis and now everything's collapsed into autism spectrum disorder?

MEGAN: I'm gonna hold off on answering if it's a good or bad thing. I will say there are mixed feelings on that in the community. I think it's really good. We've got Level 1, Level 2, and Level 3, which signal different support needs. I know that many families who are supporting autistic people with Level 3 feel that they are more prone to feel some resentment around the collapsing of the diagnosis. I understand that. I get that. I don't know that I would say it's good or bad. I think it's complex. I don't have a strong opinion on that. I know that there are a lot of opinions on it, though.

SPENCER: Yeah, and I think this gets to something that is deeply confusing to a lot of people. They might refer to someone who's autistic, who has Level 3 support needs, who can't take care of themselves, needs help preparing their meals, maybe is nonverbal, can't hold a job realistically. And then someone who is Level 1, who has a PhD in physics and is writing revered papers. The same word autistic is being used for both these groups. Is that helpful, or has that actually caused a lot of confusion, because the needs of these two types of persons are so different?

MEGAN: You're going to get really different answers on that. Maybe it's both. I'm very aware that I'm in the autistic advocacy space, and a lot of folks in that space are people like me who can access speech and who have more privilege. There is so much complexity in how we talk about this and how we signal it. What I'm concerned about is when we aren't thinking enough about privilege and intersecting identities in how we're talking about autism, and when autism advocacy erases the voices of other autistic people. This is something I think about a lot. I feel a lot, and maybe that's why I'm even struggling to answer this question. I think it's really nuanced, it's really complex, and there's a lot in this conversation.

SPENCER: Yeah, I think it is a really difficult conversation, but also I think an important one, because you could see how, for example, let's say you're a parent of a Level 3 autistic child. You could see how having others conflate autism with the high-performing physics PhD is actually antithetical to the goals and the needs you have to get support for your child. On the other hand, you could imagine someone with Level 1 autism, and people jumping to stereotypes that, "Oh, well, maybe they can't care for themselves because they're autistic." That's also very harmful, right? I could see in both cases how it could reduce their ability to have their needs met.

MEGAN: Yeah, I think that's really well said. Absolutely, in an ideal world, the visibility of autistic people like me would help create awareness that there are different ways of processing sensory information, cognitive information, and social information to increase awareness of stimming. I have the privilege to do that with safety, so that the next time someone with high support needs, who's non-speaking and perhaps Black or Brown has a meltdown in public, there's more awareness of what stimming is. Maybe that person doesn't get shot, and maybe that person survives. To me, that would be the best outcome of the combined language of autism: when those of us who can more safely be more visible increase awareness around things like stimming and actually make the world safer for those with higher support needs. Unfortunately, what often happens is this kind of weird response, and we're seeing this right now with everything that's happening in the news cycle. When RFK, I don't know, is it okay to get into this?

SPENCER: Yeah, you can talk about it.

MEGAN: Okay, when RFK said what he said, part of the community's response was, "Well, I pay taxes. Look at what I can do." That's a response that comes from a space of ableism and is harmful because it implies I matter because I can do these things. That is a very divisive response. I think the response should be, "All autistic people matter because they are people." To respond to RFK's comments by saying, "I matter because I can do X, Y, Z," is really damaging to the autistic community, especially those with higher support needs. When autism is combined into a community, there are ways it could mutually benefit everyone, like increasing awareness around things like stimming, which makes the world safer for everyone. But then you see the flip side, where people say things like that, or they say, "Autism is not a disability." That's a really unhelpful thing to say, frankly, and that makes the world harder for those with higher support needs. A lot of it is about how we're showing up. I think that's why I was struggling to answer the question. It's not just if it's combined; it's how, as an autistic community, we are considering those with different support needs. Especially those of us with lower support needs, are we considering them in the conversation and how we show up? I think it could be a benefit, but it could also be a detriment.

SPENCER: This also ties into this controversy around the concept of curing autism. You can totally understand the point of view of a parent with a Level 3 autistic child. They can see their child is suffering tremendously and needs constant help and support to do basic things. You can see why they would say, "Of course, we want a cure for autism; my child's suffering. Why would we not want a cure?" On the other hand, you could see someone with Level 1 autism who really thinks of what they have as a difference, not a disability, and they're just like, "I process things a different way. If society were a little bit different, I wouldn't have to suffer at all. If I found the right friend group and the right job, my difference doesn't make me suffer. I only suffer insofar as I'm forced to deal with certain things in the world that I hopefully can avoid." Those seem to me like both totally valid perspectives. Unfortunately, they're completely at odds with each other, in a sense.

MEGAN: Yeah, and I hope the autistic community can create space for nuance. Depending on how your autism looks for you and your experience of it, you're going to relate to it really differently, even in our language choice. You asked me, "Do you want autistic or with autism?" Because of my experience of my autism, I embrace it with pride, but that's not going to be everyone's experience, and some people are going to wish that they didn't have this. I think that is the complexity that the autistic community is being asked to hold right now: can we honor both experiences without invalidating one another? For some people, if they were given the option to take a pill and not have autism, they would, and for some of us, we would say, "No, thank you," and both can be valid responses to this experience of being autistic.

SPENCER: Yeah, it does make me wonder whether having one word to lump it all together just makes it sound more complicated. If there were more words, maybe it would be a little bit easier to talk about. If it's all just Autistic Spectrum Disorder, there's so much in that bucket. It also makes me think that the phrase "spectrum" is very confusing. When you hear the phrase "spectrum" in Autistic Spectrum Disorder, I think about a line, like you can be on one end or the other. Is that actually what's intended, or is it not really a spectrum?

MEGAN: Again, you're going to see some debate on this. The alternative to the spectrum, the critique of that is this idea of we can't be less or more autistic. This is the common critique of that. One alternative framework that's been introduced is this idea of wheels of traits. You can have more or less, so maybe you'd have more sensory sensitivities, but maybe less of the communication stuff, or more of the special interest energy, but less of this. I do like the movement toward the wheel of traits, just in that it captures how diverse the experience can be. At the same time, I am sensitive to folks who want to messily clump us together in a way that erases the conversation around support needs, because I do think that is such an important nuance to always hold on to. Again, it's going to influence our experience of ourselves and of the world. So, yeah, that's another one of those complex pieces.

SPENCER: You mentioned earlier the lost generation. Tell us more about that.

MEGAN: I could talk all day on that. Yes, the lost generation refers to a lot of folks who are born kind of mid-1990s or after. We know that people who were born after 1998 are four times more likely to have received an autism diagnosis by the age of 18 than those born a decade earlier. If you were born in the 80s or 90s, then you likely wouldn't have been identified in childhood. The interesting thing about this generation is that many of us are actually seeking mental health treatment. That's one of the things about Level 1 autistic folks; we do have less of the traditional support needs, and we tend to have pretty high mental health support needs. Many of us have anxiety, depression, OCD, personality disorders, and many of us have an experience of going to therapy and having unsuccessful courses of treatment, partly because our underlying neurology is missed. There's an interesting study that came out of Sweden. Johan Nyrenius looked at this where they examined people who were seeking outpatient psychiatric care, and they found that 18.9% of them were autistic. Do you want to take a guess at how many of them were identified or had a diagnosis?

SPENCER: I'm going to guess very low.

MEGAN: Yeah. 0.053%.

SPENCER: Wow.

MEGAN: This is just one study in one country, but that would mean one in five people seeking psychiatric care in that population was an undiagnosed autistic adult. And so that matters because the mental health needs can be quite high, and the risks around suicide are incredibly high. So there's a whole generation out there who tends to be struggling quite a bit with their mental health and perhaps even seeking treatment, but their own autism is completely missed.

SPENCER: When we see really quickly rising rates of something, which we've seen for autism in the kind of official estimates, three things could be happening. One, it could be that the diagnostic criteria had been loosened, so it applies to more people. The second is that we could be better at screening, so more people are getting correctly diagnosed. Before that, people weren't being screened. And number three is that the actual rates of the underlying condition could be rising; more people could be actually becoming autistic. I've heard people have different claims about this. Some people think that, "Something in the water is raising the rates of autism," or who knows? Do you think there's any evidence that the actual underlying rate of autism is rising? Or do you think it's really attributable to the definition being loosened over time and better screening?

MEGAN: Yeah, so I don't want to fall into binaries. I don't want to say there's no true prevalence rising. It's possible. But when I look at the statistics, what stands out to me is the historical context. We've always been here; we're just much better at identifying us. There are so many things that have been implemented, like the DSM that we just walked through. The diagnostic criteria has broadened quite a bit. We have gotten a lot better at identifying girls, women, genderqueer people, and racialized autistic people. We're also getting better at identifying underrepresented groups. There's more screening. In 2006-2007, the American Pediatric Association started implementing routine screening or recommending routine screening for children. There were more educational incentives for families to get a diagnosis because there were more support in the school system when a child had this diagnosis, so there was a social incentive to seek out. There's been so much awareness work around what autism can look like beyond those stereotypes that we mentioned. Clinicians are also slowly, very slowly, getting more aware of autism. There's so much historical and social context that feeds into the rise of autism rates that we're seeing and hearing about in the news cycles right now. Sure, true prevalence might be in the mix, but much more so, I would say, are these other factors that have contributed to those rises.

SPENCER: Of course, we live in a world where some people blame it on vaccines. I like the quote from, I believe, Jacob Appel, the bioethicist, who said, "Vaccines are pretty much the only thing we can be positive about that don't cause autism because we've said it so much. With everything else, we can't be as sure." Now you mentioned a better understanding of autism in women. Does autism present differently in women, and in what sort of ways?

MEGAN: So anyone can mask or camouflage. I always get a little bit tongue-tied talking about this because I am hesitant to perpetuate any of the gender binary, especially because a lot of autistic people actually don't identify with the gender binary.

SPENCER: But is that more common among autistic people to be non-binary?

MEGAN: Yeah, to be either trans or non-binary or otherwise genderqueer. I think it's three to six times more common to be autistic when you're trans, or the inverse of that, to be trans when you're autistic. But yeah, it's quite a bit higher. We weren't very good at identifying the girls, and that's partly because we didn't understand autistic masking and camouflaging. They are much more likely to mask and to camouflage and to do that thing where they're the social scientists who are just studying their friends and then mimicking. Because of gender bias, we might code their behaviors differently, like, "Oh, that girl's oversensitive," or "She's being bossy." It's also how we're coding that. Girls also seem to be more prone to internalize, so maybe their stimming looks like self-harm, or they're more likely to have some of those internalized disorders around anxiety or depression, or it might show up as an eating disorder. Some of that repetitive and ritualistic behavior might morph into an eating disorder, which can lead to diagnostic overshadowing because we're seeing the anxiety and the social anxiety and the eating disorder, but the autism gets missed as part of that. It's thought that girls are more likely to have special interests that culturally blend in, and also just the measurements. The measurements ask about, "Do you like to line up trains?" It doesn't ask, "Do you line up dolls?" There are a lot of reasons that we've historically been missing the girls.

SPENCER: From that point of view, the kind of common wisdom that says three to four times more men are autistic than women — do you think that might be an inflated number because we're missing women?

MEGAN: Yeah, absolutely. This research is a little bit old now, but in the early 2000s, there was a study that looked at this. The 4:1 ratio is often cited; I think it's 3:1 now. When you looked at autistic people with intellectual disabilities, the ratio was 2:1, meaning two boys for every autistic girl. When you look at the population that did not have a co-occurring intellectual disability, it jumps to 9:1, which suggests it wouldn't make sense that the true prevalence would shift that much. What does make sense is that we really didn't know how to catch girls that did not have a co-occurring intellectual disability. I think that number is not reflective of true prevalence. There's one study, again, it's just one study, one sample size. It was done by a pediatrician in Australia just a couple of years ago, and what he found was that 80% of autistic females were undiagnosed and remained undiagnosed by the age of 18. In his study, the ratio was 3:4, meaning three autistic boys to four autistic females. Now that's not been replicated. That's the only study I've ever seen that suggests more autistic females to males, but that does exist, which is pretty fascinating. We don't know the true prevalence ratio because there have historically been so many females that we've missed and are missing.

SPENCER: You mentioned how co-occurring anxiety and depression can sometimes mask a diagnosis. I've also heard there can be an overlap with ADHD. What's the connection between ADHD and autism?

MEGAN: High. I'm also AuDHD, which means I'm autistic and ADHD. The prevalence studies, as I'm sure you know, can be all over the place, so it's hard to predict, but the prevalence studies suggest a pretty high overlap of the two, and they do share some genetic markers. A parent who's ADHD might be more likely to have an autistic child, and vice versa. We know there's some genetic overlap there, but I think there's still a lot we're understanding about the relationship.

SPENCER: Probably most, the vast majority of people with ADHD don't have autism, though. Is that correct?

MEGAN: So, okay, the numbers are less, the percentages are less. I feel like I've seen, well, and again, I almost don't want to do it, because the prevalence studies are all over the place, but I've seen 60% of autistic people have ADHD, and for ADHD, it's maybe 20 to 30% also meet criteria for autism. However, the thinking is there's probably a lot of ADHDers who might be autistic, but they're experiencing diagnostic overshadowing, so socializing is hard for them, and they're thinking, "Oh, well, that's my ADHD." And it's pretty new. It wasn't until 2013 with the DSM-5 that you could actually diagnose both. So understanding the experience of both ADHD and autism together is still relatively new. I don't think we actually know yet, but I would suspect that it is lower. It's more common for autistic people to also have ADHD than for ADHD people to also be autistic. But they do seem to co-occur a lot, and that makes sense, because there's more of the population that's ADHD — it's 9% right now, and it's 3% for autism.

SPENCER: How do you feel about self-diagnosis? I think this is an increasing concern people have that as these ideas become more widely known, it can mean that people jump to conclusions about themselves. I saw one study that suggested that some of the people who self-diagnose autism may be more introverted, with more social anxiety, which could seem like autism in certain ways, but doesn't necessarily mean it's autism.

MEGAN: Yeah, this is another big conversation point, and I feel like we have to have two conversations. One conversation is around access to identification and diagnosis and the fact that, especially for adults, there are so many barriers. The more marginalized you are, the more barriers there are to accessing diagnosis or someone who understands how to assess you. I feel like I can't fully chime in on or critique self-diagnosis or self-identification until we've addressed the very real issues in people being able to access diagnosis. I like to have those conversations in dialectic with one another. There have been some studies that have pointed toward when people self-identify and when people are medically diagnosed, like when they're both included in the same study, their data looks very similar, which I think is interesting. I am a proponent of self-identification in the sense that many people just don't have access to a diagnosis. At the same time, I am also cautious if someone is hopping on social media and looking at a few reels and thinking, "Oh, I connect to that. I'm autistic." I don't think that's going to be very helpful for them, in the sense that maybe it's something else, maybe it's social anxiety, and there's treatment for that. Maybe it's bipolar, and there's treatment for that. Most autistic people are not going to self-identify that way. They're going to see a reel, it's going to become a special interest. They're going to do the bottom-up processing. They're going to read the research articles. They're going to read things like Donna Henderson's book. They're going to seek out autistic voices, and through typically hours and weeks of self-exploration, they will come to this. I think that's maybe what some people don't realize, is that for autistic people who self-identify, it's usually after a very deep, long, intensive process of learning because of that special interest and the bottom-up processing. I have mixed feelings about it. I do think these things are really complex, and I do worry that people might self-identify when it's maybe something that has a treatment protocol to it, and that's the thing they should be getting support around.

SPENCER: Do you think that online assessments, like the free ones you can do online, are worth taking?

MEGAN: I call them screeners because they're not actually assessments, so they're screeners. I do think they're worth it, and I tell people that it is one data point. I want to take one screener and be like, "Oh, look, this means I'm autistic." Collecting data points is part of the process of self-discovery, so taking the CAT-Q or the AQ or the RADS, and if all of those are above threshold, and then having conversations with people you trust and listening to autistic adults who are describing the internal experience of being autistic, all of these are part of the data collection process, and screeners can be a really helpful part of that. But it shouldn't be the only thing someone is relying on.

SPENCER: A friend of mine was wondering whether she's autistic, and her friend was trying to convince her that she is. She took one of these online screeners and got a not that high, below threshold score, saying she's not autistic, and her friend was like, "You must have answered the questions wrong." It was reviewing the responses with her and saying, "Oh, you didn't answer that one right." I was like, "That's not how this works." It seems obviously important that people get the right diagnosis. If they get the wrong diagnosis, they may get the wrong treatment, which could be bad for them. At the same time, as you point out, not everyone has good access to getting a formal diagnosis. So keep that in mind. Before we wrap up, the last thing I wanted to ask you about is getting really practical. Suppose someone has an autistic person in their life. What can they do to relate better to that person, to make that person more comfortable, and so on?

MEGAN: I think a few things. One thing I talk about a lot is the importance of developing a sensory lens. All humans have sensory needs. If you're allistic and you don't have a lot of sensory processing differences, you probably just don't think about sensory stuff a lot. For example, even asking a friend, "Hey, do you want to go get coffee, or do you want to go out for a meal, or do you want to go to a movie?" Developing a sensory lens helps you think through what the sensory asks are in that. There are a lot of hidden sensory asks in that. Do I wear perfume or cologne when I'm going to see my autistic friend? That will give me an instant migraine to be around that stuff. Developing a sensory lens is one of the kindest ways to be inclusive of autistic people in your life. Another is understanding the need for predictability and routine. If there's a change of plans and the person has a big response to that, that's not them trying to be difficult; that is their brain frantically trying to adjust. As much as you can communicate ahead of time about the plans, that's going to be really supportive for that person. I also think understanding the cross-neurotype piece is helpful. It's not that there's a right and a wrong way to communicate; these are differences in the same way that in cross-cultural communication, there are differences. I like to talk about object-based versus social-based conversation a lot, and object-based conversation tends to be an easier access point or entry point for us. That's when we're talking about ideas or objects, or we have a focal point to the conversation. It's not the social-based kind of, "How are you? Tell me about yourself" type questions. I think that's a really helpful frame of reference to have. Those are a few things that come to mind.

SPENCER: What about being more direct in communication, using less subtlety?

MEGAN: That is very, very helpful. Thanks for adding that one and also being honest. If an autistic person asks for feedback, be honest about that, or be honest about what you mean. Yes, direct communication and then honesty when someone is asking for follow-up information or even something like, "Are you mad at me?" the allistic response often is, "No, no, I'm not mad at you," to reassure. But if the autistic person is sensing something, it's actually really helpful to understand what we're sensing.

SPENCER: What if the listener wonders after hearing this conversation, "I wonder if I'm autistic?" Where would you recommend they start?

MEGAN: I would recommend starting with some of those online screeners as one of the data points. Embrace Autism is a site that has a lot of those up, where you can take them. Also, learning more about the lost generation and the adult experience. I've got a few articles up on Neurodivergent Insights that walk through the experience of the autistic brain from the lens of an adult. There are a lot of podcasts out there. I feel like this feels weird; I feel like I'm dropping a bunch of my stuff, but I do. Divergent Conversations is a podcast I co-host with another mental health provider. We're both autistic and ADHD, and we walk through the experience of autism. We have a series where we go through the autism criteria. I think that series would actually be a good place to start. A lot of your listeners are probably pretty academic, Is This Autism? is a fantastic book by Dr. Donna Henderson and Sarah Whalen that walks through the diagnostic criteria with those more nuanced presentations in mind. Those would be finding autistic voices that you trust, taking some screeners, and having conversations with people in your life, like, "Does this make sense?" Gathering information.

SPENCER: We'll put links to those in the show notes. Final question for you: Do you feel that in some ways your autism gives you a kind of superpower? Because I know that some autistic people feel that way.

MEGAN: Did you see my body response to that? No, I don't. The Disability Justice Community has spoken really well around this. When we start using superpower language, it becomes another way for society to accept me because I have this superpower thing, and I think it really minimizes the experience of the challenges of being autistic. When we start using superpower rhetoric, I would say there are strengths and challenges of being autistic, and I will talk openly about the challenges of being autistic and the things I grieve about being autistic. I will also talk openly about how much I really love how my mind works. I love that it's this hyperlinked Wikipedia page where I could get lost in ideas all day and be super happy, and it's really hard for me. My experience of the too muchness of the world, my experience of my body, is really hard for me. It's both strengths and challenges, and I'm nervous about things that make autism all one thing or that use superpower rhetoric in the same way that I'm nervous about rhetoric that makes autism a tragedy.

SPENCER: Megan, thank you so much for coming on.

MEGAN: Thanks for having me.

[outro]

JOSH: A listener asks, "Are there any contexts in which rationality is irrational?"

SPENCER: Sure, well, there's contrived scenarios, like suppose there was a super intelligent AI, this is I'm gonna punish anyone who's rational, right? So then it might be rational to try to make yourself a rational, so you avoid punishment. So that's obviously really silly and contrived. I think that there's different definitions of rationality and there's certain definitions that kind of sneakily make it so that no matter what rationality always has to be good, right, just sort of by definition. Like, if you define rationality to be like, being good at getting the things that you wanna get or something, it's hard to say like it would be bad to be good at getting the things you wanna get, but if we take maybe a bit of a more sober definition of rationality, like having your beliefs be in alignment with the evidence that you receive and seeking out evidence in a way that helps you figure out the truth on your beliefs that are important to you, so that kind of epistemic version of rationality. Yeah, I may think there can be times and places where it can harm you, for example, suppose you're born into a religious cult, and maybe it's like not such a terrible religious cult, and maybe all your friends and family are there and you're actually pretty happy there, and yeah, maybe there's some cost to being in the cult, but they're much greater cost to being thrown out of the cult, like you lose everyone in your life who you've ever known, and they'll never talk to you again. Maybe some rationality actually might cost you a lot, and depending on how much you value truth versus other things, like your family, maybe realistically, you could be harmed by being too rational in that environment, and I think that sometimes happens.