The History of Neurodivergence

(upbeat music) - Hello, this is the neurodivergent woman podcast. - I'm Monique Michelson, and I'm a clinical psychologist. - And I'm Michelle LeVoc, and I'm a clinical neuropsychologist. - This is a podcast where we center and showcase neurodivergent women from all walks of life, covering autism to ADHD and everything in between. We aim to educate and inspire women who think differently. - In today's episode, we're going to be chatting about the history of neurodivergence. So we're gonna be talking a little bit around where the term neurodivergence came from, and the history and evolution of how things like ADHD, autism, psychosis, mania, dyslexia have actually evolved and progressed. So probably the first thing to just touch on when we talk about the history of something like neurodivergence is this idea of the myth of normal. And this idea of normal or a benchmark is quite bizarre really when we think about the brain, because even though we all have the same bits in our brain and kind of different areas of the brain that do particular things, and that's quite consistent across people, everyone's brain is different. And this is between neurotypicals and neurotypicals or testics and autistics, you know, it doesn't matter who you are, the person to your left has a different brain to you. You know, this is really illustrated by the fact that you can have two people who have a stroke in the same region of their brain, or have the exact same brain trauma or brain injury, or even two people who both have Alzheimer's disease. And the functional impact of those things could be totally different between those two people. A really good illustration of that is the idea of Alzheimer's disease versus Alzheimer's dementia or dementia generally, because most people think of those things as one and the same. But actually, you could have the disease process of Alzheimer's going on, which essentially means that your cell bodies and your brain are disintegrating. But it's actually very possible that that disease process is going on, but you're actually not displaying functional signs of the dementia, which is the kind of apparent functional loss of memory, thinking skills, all the things that we associate with Alzheimer's. And there's a really interesting longitudinal study that was done on a bunch of nuns, actually. And what they did in the study is they took a whole bunch of different measures, including, you know, health measures, but they also took things like diarrhea entries from the nuns across their lifespan. And when the nuns died, they cut up in their brain and looked at what was going on inside their brain. And what they found for some of them is that even though they weren't demonstrating clinical signs of dementia, their brains were actually quite riddled with an Alzheimer's disease pathology. And again, this is just an illustration that everyone's brain functions in different ways. So this idea of a normal brain or a benchmark brain is actually just quite ridiculous. - Yes, I think there is no normal. There's so much variation among human beings. And when you look at the history of planet Earth, what's normal from one era to another era in history and the cultural and societal expectations between time periods in history and different countries is completely different. So what's normal for one era and one country or culture could be, you know, different for another one? - For sure. And I think things that we just consider as so obvious or of course this is the case, exactly as you say, that's not always been true, even in the same society across areas and certainly not necessarily true across cultures. - Yeah, and I think even the language and the concepts behind language that people use are different between different time periods. For example, the word now like mental illness has meant a certain thing in our current culture but how long has that term actually been used or been around? - Yeah, and I think it really speaks to again, you know, for that particular culture or that particular era in time, what actually is the cultural purpose or narrative or story? What are the primary needs that people are being propelled to meet during that particular time? So, you know, we're now in a time where industrialized, it's very tech-driven. Most people have most of their basic needs met and so I think as a society, a lot of the exploration has now gone into, okay, well let's understand the mind and there's been quite a journey in Western society around understanding the mind and I don't think that we're there yet but when we think about other periods in time when the goal was to survive, the goal was to have enough shelter, have enough food to eat, have a family grouping, reproduce, you know, a lot of those basic survival needs were the focus. The relevance of how you were functioning mentally was really only related to how well you were able to fulfill the drives or purpose or goal of your society at that time and realistically nothing's changed, right? It's just the goals, drives and purpose of our society now is different to what it used to be and is different to other cultures, for example. Nick, you and I have touched on this in other episodes as well but this whole idea of disorder, disability is so relative and it's so relative to the time and I think when we are talking about neurodiversity whether something is accepted as a quirk or a funny difference or something that is to be tolerated or even accepted really has to do with whether you are still able in some way to fulfill the purpose, goals, drives, needs of the society that you live in in the time that you live in. - Yeah, and I kind of feel like there probably has never been a time in society where so much in a way is expected of the individual person, you know, we're expected to go to school for 13 years and then university on top of that and then work full time, five days a week until you, you know, turn 65 and have children and maintain a house and do multiple appointments and maintain friends and relationships and have information overload all of the time so I feel like the demands in some ways are different from previous times where it was more about like, okay, let's go and, you know, farm our food and that's like what our primary attention and goals are focused on. But I feel like there's just so much multitasking and information overload and multiple roles that people are expected today to be able to fulfill perfectly all at the same time forever. (laughs) That so many people are burning out and finding that, yeah, it's just so hard to do everything all of the time. Whereas you compare, you know, to where society was, like 300 years ago, sure, there were some pretty bad things about a lot of bad things. Yeah, a lot of bad things about time back then. But if you think about what the typical person's life was like, you would be living in a village somewhere with the same 50 people, you know, to 200 people that you've known your entire life, doing the same routine every day with much less stimulation and overload and be focusing on probably one or two things. I really like that point around having to do multiple roles. And I think that's so true, you know, we feel like we have to be everything and be the best at everything as well. And no one can do that. And this idea of information overload being connected to everyone all of the time, having to do everything, seeing what everyone else is doing and then having social comparison around that, it's a lot. And I think that there's something to be said for just identifying what brings you joy in your life, what are you good at, and what do you want your life to be about? And just do those things. You don't have to be everything to everyone and fulfill society's every single need. Yeah, and I think expectations are different as well at the moment. You know, everyone's expected to be able to do the same thing at the same time or all pushed through the school system and expected to be at the same developmental level at the same time. And I've recently, you know, had talks with people about how actually it's okay not to do everything. It's okay not to be able to do everything or want to do everything at the same time as everybody else and really focusing on what's important to you and kind of examining those societal expectations of where we are at at the moment and really thinking about, yeah, what you can do with your time and energy. And I think two different societies across different times and cultures all have different expectations about making room for people who are different. And what their expectations of those people are, how they support those people. And I think that plays a big role as well. Like in our capitalist Western society today, everyone is expected to pull themselves up by their bootstraps and just try harder. And that doesn't work for most people. Whereas in other cultures, say if someone is different, they might be accepted for who they are. And, you know, give them the supports that they need to be in their community and do what is important to them without that whole pull yourself up by your bootstraps idea. - Yeah, it's so fascinating when we think about cultural narratives and the role that they play in how we see ourselves within a society, you know, the American cultural narrative which to a degree is the Australian cultural narrative and the British cultural narrative is really this idea of the hero's journey. It's individualistic. It's this idea that each person is on their own hero's journey and the hero faces challenges and then overcomes those challenges and gets to the end of their journey and is the hero. So, you know, that's a narrative that fits really well for some people with their lives and their strengths and their unique abilities and their experiences. It's not a narrative that fits really well for everyone. And the issue is that there's nothing inherently wrong with that narrative, it's just not a one-size-fits-all. Other cultures have a different cultural narrative which is a collective, a cultural narrative. Your role in society is how you fit within the broader community, within your family and the individual needs that you might have sacrificed for the good of the community. So, I think even just being aware of what your culture's dominant cultural narrative is can be really helpful because it can really help you differentiate between what part of my goals, my values, how I see myself contributing to society is me trying to fit myself into the dominant cultural narrative. And what part of it is actually coming from my own unique strengths, abilities, skillset. And likely there'll be elements from both, but having that awareness can be really, really important in working out, okay, what's my purpose? How do I want to contribute? How can I best contribute? So, part of being aware of how we can best contribute to our society, our community, our self, how we can best live our purpose is realizing what our unique strengths are. And as you know, you're not touched on in this episode, in different cultures, different time periods, different strengths were valued. So, we know that individuals who are autistic are often extremely good at pattern recognition, seeing details in things, focusing on a problem until every single aspect of that problem is plumbed and solved and worked through. And, you know, lots of people have commented that so many of our technological advances in society, both prehistoric and within recorded history, have likely been spearheaded by autistic individuals. - Yeah, so with the pattern recognition that you mentioned, Michelle, I just thought, you know, how many autistic people who have those pattern recognition skills are good at being advisors and actually seeing all of the information, picking out the patterns and going, this, this, and this will work or how things currently are being done. This, this, and this is like not going to work and it's going to lead you to, you know, XYZ outcome, which is not what you want and giving people that advice and being in those advice of positions. So, like often in different situations, like I will see all of the data, all the patterns and I'll know, like that's not going to work. But then if people actually, if you actually say that to people, are they actually going to listen to it? That's the other thing. - Yes, such a good point. And I think it really speaks to again, the absolute necessity in society that we have neurodiversity, we have differences because not everyone is suited to everything. If you've got a neurotypical person looking for patterns, they're probably going to miss certain things, right? So, exactly as you said, you know, an autistic person is going to be much better in that advisory role. But then it might be helpful to have a neurotypical person who's the one who delivers the message. So, you know, it's really, really important that we as a society see everyone's strengths and allow everyone the freedom to be their best version of themselves, to do the thing where they really shine. With ADHD is we've got incredible idea generation. We've got novelty seeking, creativity, curiosity. And we see similar positive traits in individuals with bipolar or manic episodes, you know, living in a society that we live in now, having a manic episode is not conducive to, you know, an effective member of society, right? And I'm also not trying to downplay the experience of individuals who have manic episodes who perceive them to be quite distressing, particularly then when we cycle into depression afterwards. But also we can see that there's often an evolutionary reason for these neurodivergences, otherwise we wouldn't really have them in the gene pool. - Yeah, and I think with ADHD risk-taking, definitely has an evolutionary benefit. If you were someone in a hunter-gatherer society, being someone who takes risks could really pay off in terms of getting food for your tribe that night. And in also being creative and inventing things and innovation. - Yeah, absolutely. And, you know, things like psychosis often again, really demonized in our society at the moment. And I don't want to preempt too much because we're going to have an amazing episode with a schizophrenia and psychosis researcher. But, you know, historically, people who've experienced psychosis have been the shamans, the spiritual guides, you know, the witches of these society or the grouping. - Yeah, and I think often in societies in previous eras and the more Eastern cultures and indigenous cultures, there was a place in those cultures and tribes for people experiencing psychosis. And they would be the shamans of that society. And it's actually a very privileged position where you are very well respected in your community. People go to you for advice, you're considered an elder, someone who helps people with all sorts of issues or problems. And you're there actually to serve your community. So there's a really well respected role there for you. And just comparing that to people's experience of psychosis in Western society today, where often every step of the way people are treated as inferior and relegated to the outsides of society and often go through experiences where they're dehumanized and not valued like it couldn't be a more different experience. (upbeat music) - Even something like dyslexia, which is pretty much only considered in terms of its deficit, right? Difficulty with reading. You know, we know that reading is a human invention. As societies, we haven't always been literate. And so the idea that some people might find that more difficult than others because of differences in the way that their brain is organized or set up really is just super logical. And what's super interesting is a bunch of studies done on individuals with dyslexia found that they often have much better visual spatial abilities than non-dyslexic individuals. So this is, you know, they're often a lot better at identifying those kind of impossible object drawings that were popular a little while ago. Processing low definition, visual information and perceiving peripheral or diffused visual information more quickly and more efficiently. So, you know, that clearly has many evolutionary benefits, particularly when we're thinking about pre-literate societies. And it's really only in modern times when the ability to be literate and the ability to read and write efficiently has been one of the biggest markers or pathways to, you know, participating efficiently in society. Prior to that, I can see so many different ways where this kind of improved visual spatial ability would have been a massive benefit. - Yeah, I can see how it would be a benefit in things like designing tools, construction, planning routes and even identifying objects in nature. So looking at, okay, where's that bird? What's that plant? - Yeah, that's such an interesting point, you know, that ability to differentiate, you know, one plant from another plant that's similar looking. - I could actually imagine even just spotting landmarks in your landscape or being like a lookout and having to spot like a messenger. Yeah, that sort of thing would be so beneficial. - Oh, for sure. Like, I just think if I did not live in a literate society, I would just be the biggest dumb dumb, you know. My visual processing is atrocious. When I was in uni learning to do some of the cognitive tests that, you know, Neurosaxx can doubt, we sort of had to practice on each other as students and I have this really visceral memory of doing a visual processing task and actually just not being able to do it. And I was getting so frustrated and flustered. And, you know, thinking back to that experience, I think now about children who come through, who I see, who have to do reading and writing tasks. It's like, like, I get it. It is so upsetting and frustrating to feel like your brain is just not working in the way that it's being asked to work, you know. I can never find anything in my house. I run into parked cars sometimes and it's quite interesting to think, you know, just the time that I've been born into and what society values at this particular point in history has meant that that doesn't really matter for me. - Yeah, very interesting. For me, it's like, oh, I can see that twig at 500 meters. (laughing) - Yeah, I mean, my partner's the same. We actually were walking on the beach another day and he started talking about a hawk or something and he just started talking about it as if, you know, it was obvious. I'm like, what hawk? He's like, are you serious, Michelle? Like, the hawk has been flying over us for the past, you know, 200 meters. Like, all I see is sand and ocean. (laughing) - Yeah, sometimes it is like, how can people not see that? Like, but, you know, we all have our strengths and we all have our areas that, you know, our brains are not the best at, so. - Thanks, and you have to share that. (laughing) (upbeat music) - So just briefly, Manique and I are going to go through some of the key points in history around autism and ADHD. So the term autism first emerged in 1911 and it was actually used to describe some symptoms of schizophrenia. Then in the 1940s, that's really when the idea of Asperger's or autism was kind of introduced into common parlance. So we really had two key figures, both Austrian. We've got Hans Asperger and he lived and worked in Vienna. So he was the one who popularized this idea of Asperger. So the idea of kind of the little professor, these kind of differences in our children who he saw as Asperger, and he really focused on autism and Asperger's as a communication issue, so social processing issue. But he didn't really kind of use those specific terms. And certainly at this time, it was still seen as a disorder, as a problem. Then we've got Leo Kana. - Leo Kana immigrated to America to flee the World War and the Nazis while Asperger's worked at the hospital in Vienna under the Nazis' reign and did research programs and stuff for them. And Leo Kana actually, in a bid to escape the war, moved to America and he actually wasn't a psychiatrist. He was a physician, so a doctor. And basically, I think he was probably desperate and got the first job that he could, which was actually in a mental institution in the middle of nowhere America, where he started to learn about psychiatry. And he produced some research that caught the eye of a famous psychiatrist in America. And then he moved to go and study with the psychiatrist. He was more focused on the idea of autism and like about behaviors, like repetitive behaviors. And I think he actually had a role in the whole refrigerator mother theory of autism as well. - And this kind of really gained popularity in the 1950s. And for those of you who aren't across this, it's basically this idea that autism is caused by cold mothers. - Wow, wait a minute, the mother's everyone. I love society back then, like what about the role of the fathers? Where are the frees of fathers or the toast of fathers? Like, yeah, look, I mean, it's pretty classic. So, you know, there was this idea that individuals who are autistic, the reason for that was because their mothers weren't meeting their emotional needs, their mothers were cold, their mothers were distant. And so a lot of the treatment around that or one form of treatment was really around separating the child from the mother, which as we now know is if anything, only going to increase harm to the child. And it's interesting when we think about this idea of refrigerator mother. Now that we know that there's a genetic link in autism, it's likely that the mother was just not behaving in the typical ways that mothers were expected to behave, you know, in that era. So thankfully, this is not something that society believes anymore. And the term neurodiversity was first used by autism rights activist Judy Singer and popularized by New York journalist Harvey Bloom in 1999. And so this really came to the fore to articulate the needs of people with autism. We didn't want to be defined by disability label. And even though that term neurodiversity was first used in 1999, the idea of neurodiversity, the idea that you actually don't have to feel sorry for us, was actually first popularized in 1993 by Jim Sinclair. And he wrote a speech entitled, "Don't mourn for us." That's freely available if you just Google it. It's really beautiful. Really around this distinction between, okay, I have a child with autism and I'm grieving because my child has a disease. And the point that he's really making in that speech is that no, your child is different from your expectation. So you can grieve and mourn for your expectation not being meant your life potentially being different to how you expected it to be. But the child itself is an autistic child. And he's one of the first people who's actually publicly articulated this idea that neurodiversity is a lens through which you experience the world. And if you take away the autism or the ADHD, we're extrapolating, then you actually take away the person. You know, if that person's autism or ADHD was quite unquotcured, then they would be a different person. - Yeah, and I think leading up to the 1990s and 2000s, most of the focus on autism was treatment for a cure. So people would be put on diets. They would be subjected to electric shock therapy. They would be taught ABA, which is basically trying to extinguish autistic behaviors that actually help autistic people cope with living in a neurotypical world and can actually create further distress. And I'm just curious in that the neurodiversity movement, which comes from the wider disability movement, I wonder if that occurred in the 1990s and the 2000s because of a lot of those children that went through that phase in history of trying to be cured. And there's actually a lot of reports from those kids who are now adults saying, wow, actually that was traumatic to go through some of those treatments. And actually it's okay just to be us. - Yeah, we could literally do a whole episode on just the history of autism, but we don't have time for that. So if you want a really thorough history of autism and the neurodiversity movement, check out a book by Steve Silberman called Neurotripes. I would recommend. So with the history of ADHD, a lot of people have this conception that ADHD is just this new fangled thing that's related to the rise of video games and technology. But the first mention of ADHD-like traits actually goes back to the 1700s. So in 1798, there was a Scottish physician called Professor Alexander Critchton, and he actually wrote a book called "On Attention and its Diseases," where he actually had a really interesting description of what is attention and what are we noticing in people that have a difference in their ability to pay attention. And he actually mentions the incapacity of attending with a necessary degree of constancy to any one object. Every impression seems to agitate the person and give them any mentions to him or her, which is interesting, an unnatural degree of mental restlessness, people walking up and down a room, a slight noise, moving a table, shouting a door suddenly, an excess of heat or cold, too much light or too little light, all destroy constant attention in such patience. So it's quite interesting the description that he makes from so long ago. He actually says that they have the fidgets. (laughs) - I love that. I'm actually going to use that from now on. - Yeah. - You have the fidgets. - Yep. (laughs) Yeah, and it's interesting like in 1844, there was a German doctor that actually created an illustrated book of children's stories, which includes a story about fidgety fill. - Oh my God. - So fidgety fill apparently is trying to sit long enough at the dinner table to eat his dinner. And the father's like, come on, sit still, eat your dinner. And fidgety fill just can't do it. And so he falls off the chair and all the food falls off the table as well. - Yeah. - Like, that's sad you don't get to eat your dinner. (laughs) - Well, it's so fascinating. - Because it just speaks to the fact that these kind of ways of being are just ingrained as different traits, different parts of being human. And it's really interesting to read these types of, you know, consolation of traits in people, even before we had a name for it, or before we called it something. - Yeah, it's interesting because most of the earlier research and different theories about ADHD mostly talked about the hyperactive traits of ADHD, but even in this guy who wrote these children books, he also has a story about Johnny looking at the air. (laughs) Where Johnny was always looking at the sky in clouds that floated by and was easily distracted, and which resulted in the collision with an approaching dog and made him fall in a river. - Yeah, I'm Johnny. - It is interesting, too, though, that both of these characters are male, you know? - It is. - That attention issues, hyperactivity, just tractability, was not even recognized in a children's story in girls, you know, at that time. - We've talked before about the underdiagnosis of girls and women when it comes to ADHD. And I think this just speaks to, you know, the history of that, where even more so in that era, where girls sat and were good and were quiet, and whereas, you know, looking the air Johnny and fidgety film might be seen as rascals, right? If it was looking the air Sally, it might be, well, what is wrong with Sally? - Yeah, Sally probably would have been thrown in an institution. - For sure. And thinking about social class as well, just to digress a little bit, it's even the case today, but even more so, you know, back then, where if you were wealthy and well-off and of high social status, or if in spite of your neurodivergencies, you were still able to contribute to society, or because of your neurodivergencies, you were able to contribute to society in the way called for at that particular time. These kind of your synchrosies were tolerated. - Yeah, or their eccentric. - Exactly. - You know, the local Lord or lady, and that's a bit odd, you know, you can afford, I guess, not to be thrown in an institution. - Absolutely, whereas if you were of lower income or lower status and you weren't protected by that buffer of wealth or status, if you were not subscribing to that particular narrative, or not participating in society in the way that was set out for you, then that was a lot more problematic. And, you know, we've obviously improved a society from that point we've got social safety net, we've got, you know, lots of options to support people, but in another sense, we really haven't. If you are really well off person, there's a lot more tolerance and acceptance. Like if you're an eccentric billionaire, for example, absolutely, not naming names. Whereas if you were of lower status to society, you know, there's less buffer. (upbeat music) So we've got all these examples of ADHD traits being mentioned in people, you know, well before the 1900s. It was really only in the early 1900s. So that this idea of ADHD, as it now is labeled, came to the forefront of public consciousness. So in 1902, we have a British pediatrician who describes ADHD-like traits as an abnormal deficit of moral control in children. He found that some affected children could not control their behavior in a way that a typical child would, but they were still intelligent. (laughing) And so I think, you know, that really speaks to the values of the time, which was a, very medicalized, and b, our personality, our traits, the way that humans existed in the world, certainly in British society, were very much seen as an indication of someone's moral value, you know, was very moralized. So not being able to sit still at that point in time wasn't just an aspect of that person's personality, it actually said something about their moral value in society. And like we were saying before, you know, there's been changes and positive advancements, of course, in the way that we perceive humans and society. There also hasn't been. And I think as a society, we're certainly not at the same level of puritanical values as we were in the early 1900s, but I still certainly see this hangover, I guess, of the moralization of skills and functionality in clients today, struggling with being able to do things that your brain just doesn't find easy, is not just seen as, oh, well, that's just something I'm not good at, but I either need to be okay with or develop some coping strategies around or manage in some way. It's actually seen as, "And this makes me a crap person." - So the next development in ADHD was in 1932 with a German physician who named it a hyperkinetic disease of infancy. And in this theory of hyperkinetic disease, they talked both about hyperactivity and inattentive traits. - So our kind of understanding of ADHD continued to progress throughout the 1900s and actually, Enthetamine use as a potential treatment of ADHD was first introduced in 1936. And then Ritalin, pretty much as we know it now, came into place in the 1950s. - The name Ritalin actually derives by the person who first synthesized the compound in 1944 and it was named after his wife who was Margarit or Rita. - That's very sweet. I guess, you know, if you're a boat maker, you might name your boat after your partner and he's like, "Well, I made a drug, so I named it after you." - Yeah, so now you know what the name Ritalin comes from. - A further theory about ADHD that came into being in the 1900s was the brain damage theory. So if you had traits of ADHD, you would have been labeled with minimal brain damage. - So that's really interesting and was that considered, you know, a developmental brain damage like are these children are just born with this brain damage? - It was considered to be developmental like you're born with it or you could develop it through brain injury. Yeah, the whole hyperactivity was linked to the idea of being caused by damage to the brain. And this was like in the '70s, '60s and '70s. - So our understanding of ADHD traits kind of gradually changed and shifted throughout the 1900s. And then in 1987, with a third edition of the DSM, which is the diagnostic and statistical manual. So that's what psychologists and psychiatrists used to diagnose things. This is when the ADHD, as we know it now, was first introduced. So the term ADHD went through a couple of different iterations. So it started with, you know, ADD, predominantly hyperactive, predominantly not hyperactive. So we've gone through a couple of versions and now we've landed on ADHD. So attention deficit hyperactivity disorder. And we can have three different types of that. So we've got predominantly inattentive ADHD. So that's kind of, I guess, ADD, what was previously considered ADD. Then we've got predominantly hyperactive. So these are people who don't really show the inattentive traits as much. That's really rare. I've only ever come across one person who's only met criteria for the hyperactive traits. And then the most common type is our combined type. And that's individual to show both inattentive and hyperactive traits. So we saw a big upswing in diagnosis in the 1990s. And that's really attributed to better understanding of what ADHD looks like and how it could manifest. But of course, you know, even in this time, there was massively limited awareness of what ADHD looked like in girls. And we've touched on the underdiagnosis previously. And some further progressions in understanding ADHD really came about in the 1990s when a lot of genetic research was being done and neuroimaging research as well. So there was found to be a genetic component of ADHD. And it was finally recognized in the 1990s that ADHD was not just exclusively occurring in childhood and just mysteriously disappeared in adulthood but that it actually continues on throughout adulthood for most people. 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