Changes in the Concept of Autism - Francesca Happé CBE

It's a great pleasure and privilege to be here with you today and to share some thoughts on the 30 years and more that I've been working in the area of autism and reflect on how our understanding of autism has changed over that time. And I really look forward to your questions. Where I will get to learn from you. The Gresham College lecture that you're listening to right now is giving you knowledge and insight from one of the world's leading academic experts, making it takes a lot of time, but because we want to encourage a love of learning, we think it's well worth it. We never make you pay for lectures, although donations are needed. All we ask in return is this. Send a link to this lecture to someone you think would benefit. And if you haven't already, click the follow or subscribe button from wherever you are listening right now. Now, let's get back to the lecture you. So autism is perhaps more present in everyone's consciousness than ever before. And you can see autism being reflected in news articles like the one today about employment and also in fiction in books and films. Some of the coverage is very misleading, of course, and some of it, uh, perpetuates myths. But I think there's greater awareness of autism than any time during the, uh, 30 or decades that I've been working in the area. And most people when I tell them what I do, will say, oh, yes, I have a friend whose, whose child is autistic, or some sort of connection. But what is autism? Well, you can answer that question in lots of different ways. We know that autism has a strong genetic component in most cases, but we don't have a genetic or a blood test for autism, and we're still defining and diagnosing autism on the basis of behavior. So we're talking about a, a behavioral syndrome, a pattern of behavior, um, characterized by social and communication differences, and sometimes difficulties by rigid and repetitive behavior, uh, which now includes sensory sensitivities also, um, and something that, a characteristic that is present from early in life, even though the diagnosis may come much, much later. And as I'll go on to talk about later, we have some people coming for first diagnosis in their fifties or in their seventies. But the characteristics of autism were always present from very early on. So the first way that autism has changed, uh, is from being considered rather narrowly defined rather narrowly, to a much broader definition. So in the 1980s, the diagnosis was called infantile autism. Uh, reflecting again, a very different history where initially autism was distinguished from and talked about as childhood schizophrenia. Um, and some of the diagnostic criteria were pervasive lack of responsiveness to other people. So being oblivious of others, gross deficits in languish development, often an individual who didn't speak or only spoke a few words and absence of delusions and hallucinations. And you can see that that is an attempt to distinguish autism from schizophrenia, from psycho psychosis spectrum. Now, most of us, when we think about our autistic friends and relatives, they may not fit those criteria at all, certainly not pervasively unresponsive to other people, for example. And they may have very good language. Our current diagnostic criteria for what we now call autism spectrum disorder, um, include things like persistent deficits. Some people would rather say differences in social communication and social interaction restricted repetitive patterns of behavior, interests or activities. And as I said, that now includes sensory sensitivities. Um, and importantly in our current conception, you can have an autism diagnosis and a diagnosis of A DHD or of anxiety of depression. And surprisingly, that was only allowed from 2013, uh, in the current diagnostic criteria. Before that, if you were anxious and autistic, your anxiety was put down to your autism, which obviously isn't helpful, and I'll talk more about mental health later on. So a great widening of those diagnostic criteria, incorporating many more people. When I started in the field, most autistic children were in special school. Uh, many or most had intellectual disability, um, language difficulties, and we were really fighting a lot of underdiagnosis. Now, most autistic children are in mainstream school. Uh, that may not always be the best place for 'em if they're not well supported, but most are in mainstream, most will have pretty good intellectual functioning and serviceable or, or good or excellent language. So the picture, the autistic population has really changed. And as autism has changed from being narrowly defined to much more broadly defined, it's also changed from being a rare condition to a, a common condition. So in the 1980s, we talked about between four and six in every 10,000 individuals meeting diagnostic criteria for autism. But today we talk about 1% of people or maybe even 2% of people, and sometimes studies in the states saying even higher, um, numbers, what happened between 1980s and today? Well, one thing that happened was that in the mid nineties, a new diagnostic label, Asperger's syndrome was introduced and it was introduced to capture people who didn't have a language delay or cognitive delay, but still had those social communication difficulties and the regional repetitive traits. And I think for the first time then in the nineties, if a parent had a child diagnosed with more classic or obvious autism, they might read around the topic and they might find descriptions of Asperger's syndrome and think, ah, that might be me, or that might be my father. The grandfather of of the child who's just had a diagnosis of autism. Before that, when the picture was very much about autism with language today with intellectual disability, parents weren't likely to read about autism and think that's me as well. So we see a big expansion there. But I also want to point out that there probably hasn't been a real increase in the rates of autism. We can't be sure because we can't go back retrospectively and apply our current diagnostic criteria. But what I've shown you on the slide is the smooth, smooth blue curve that is often used by, uh, autism charities and campaigners, particularly in the states, to say, look at this huge rise in the rates of autism. Please give more resources, please give more, uh, um, intervention and support. But in set, I put the, the rates of autism in 2002 and in 2000 and, and um, six in different states in America. And remember that in America, the code, the diagnostic code you have on your health insurance claim determines how much money you get and what resources and services you get. And it happens that you get more for autism thanks to the campaigning of, of, you know, hardworking advocates and parents, you get more for autism than for a diagnosis, for example, of intellectual disability. So the very different rates and the very different degrees of change in that inset bar graph in different states is unlikely to to be telling us that actually, um, in Arizona there has, in 2006 there was a change in what was in the water so that more people were autistic. It's much more likely that services have changed, awareness has changed, provision has changed. And the other thing that helps us to understand the change in the rates of autism, apart from the broadening of the diagnostic criteria and greater awareness and understanding is diagnostic substitution. So as the rates of autism have gone up, the rates of intellectual disability as a sole diagnosis have gone down. Um, so I don't think there's a change in the numbers of people who are autistic, although I can't prove that. But there are lots of other possible explanations. So that's data from America and we have that proviso about, um, um, medical insurance records. Here's some recent data from the uk and um, what I want to highlight are, are two things. First, note that these graphs show the percentage increase. It's not the numbers of people with an autism diagnosis, it's the percentage increase over time. So if you start off with very, very few diagnoses in a particular age group or in say females versus males, you will get a big percentage increase, even if there are still fewer females being diagnosed than males, for example. But it's still informative, I think, because it shows that the big increase has been in first diagnosis in adulthood over the age of 19. And in women and girls rather than in men and boys and the authors of that work, GI Ross and her collaborators at Exeter conclude from those two facts that they don't think were over diagnosing autism. Instead, were catching up on people who have historically been missed. And we'll come back to the catching up in in older people a bit later. A third change in how we think about autism is from thinking about autism is mainly affecting boys and men to recognizing that autism is relevant for all genders. So in the 1980s, we estimated that perhaps five or 10 times as many males as females warranted an autism diagnosis. But most of that data was from clinical records or records of who was on the special educational needs registers from those records, it looked as if fewer, many fewer girls and women were autistic compared to males, but when they were autistic, they were more likely to also have intellectual disability. Now, fast forward to the 2020s, and it seems from good meta analytic studies that maybe the ratio is three times as many males to females. And that's taking data from really good epidemiological studies that have gone out into the community and ascertained who would get an autism diagnosis rather than looking at the lists of the people we already know about. Because if we're missing women or girls, then the lists of people we already know about are not going to give us a fair estimate. So maybe three times, uh, more females than males. And in those population-based, uh, databases, it doesn't seem that women are necessarily more likely to have intellectual disability. The ratio of three to one seems to be true across the ability spectrum. So that suggests to me that we have been missing or misdiagnosing women and girls and particularly those who are intellectually able. And when you make that comparison of, of five to one or 10 to one, when we used to talk about Asperger syndrome compared to three to one, I think we're missing or have historically missed a really large number of women and girls. And I'm going to say a little bit about that. So is there evidence that we're missing or have historically missed women and girls on the autism spectrum? Well, we know that females are, are identified or diagnosed on average later than males. We know that a male and a female individual with the same level of autistic traits, the female is less likely to get diagnosed. So those are, uh, some reasons why we can think that we probably have missed them, and we then need to say why are we missing them? And I think a large part of this is that we all carry an unconscious, uh, bias and stereotype of autism as being male apart from anything else. Most people will have met more autistic males than females if only because of the historical underdiagnosis of women and girls. But I think we also, uh, carry a lot of unconscious stereotypes. So the picture here of the lined up cars and then the lined up cuddly toys, if you look at the lined up cars, you might well think, ah, yes, that's quite autistic lining things up, enduring repetitively lining things up. That could be a sign that this child has high autistic traits or warrants an autism diagnosis. But then you look at the cuddly toys lined up and your first response might be quite different. It might be, ah, how sweet, maybe she making an assumption, maybe she's going to play school and pretend to teach them. And then that doesn't look autistic at all. But in fact, they're the same behaviors. We're just bringing a a sort of gendered lens to them. And in the same way we know that, um, that the kinds of obvious signs of autism that's say primary school teachers might on average look for, don't always work to pick up girls on the spectrum. So you might see a little boy who's autistic who is quite obvious in the playground because while the other boys are playing football, um, he's just walking the perimeter pacing the perimeter. And a teacher will spot that. But a teacher might not spot a girl who is just on the edge of the social group of girls who are all chatting, who's laughing just a little bit after they're laughing or looking just a little bit outta place. So the manifestation of autism in girls may also sometimes look a bit different or not fit our stereotypes. So for example, many people might think that the autistic, um, social style will be to be socially aloof, but in fact, many autistic girls and many autistic boys as well are very, very attached to one person, to one child at school. In fact, unusually clingy to them. But that doesn't always fit with our stereotype of autism. Another reason that we may be missing women and girls on the autism spectrum has to do with diagnostic overshadowing. And of course this can happen also with boys and men, but particularly diagnostic overshadowing from pertinent diagnoses that are more gender, uh, sort of stereotyped. So eating disorders is a very good example, and from my colleagues at the I-O-P-P-N, we know that around 20 to 30% of women coming to services for anorexia will, if they're tested for autism, will pass the diagnostic threshold for an autism diagnosis even though they've never had that diagnosis before. You have to be careful about making conclusions because we know that when you are at starvation weight that affects your cognition, particularly your social cognition. But I think the evidence is amassing that when these young women, uh, reach a healthy weight, they still have the traits of autism, uh, that would probably be sufficient to have an autism diagnosis. So what's happened is that perhaps a clinician sees the eating disorder but doesn't go further to ask, is this anorexia in the context of autism? And that really matters. Um, the, my colleagues on the eating disorder ward told me about, um, they now have a wonderful pathway for autistic women and men if they have eating disorders too. But before that, when they were still learning, they, uh, told me about a woman on the ward who, unlike all the other anorexia patients who were, um, very well turned out, always clean hair, always washed, she was quite disheveled and a bit chaotic. Um, and nobody wanted to say anything because you don't make negative comments about how someone looks on an anorexia ward. But somebody talking to her thought, well, maybe this is not just anorexia, maybe this is autism. And they talked to her and in fact, she wanted to be given a regime to have a shower every morning to wash her hair every three days. She wanted a routine that was written down and then she was very happy to stick to the routine, but without structure, she wasn't sure what to do to keep herself, um, sort of clean and, and well, and similarly, it turned out that her eating disorder wasn't at all to do with body image concerns. Instead, she wanted to keep her weight at a particular number, which happened to be a prime number. And it was about, uh, interest in that number and a need for control, which of course is often the case with, uh, many people with eating disorders. But she wanted to control this number. And when it was explained to her that she could aim for a different prime number that was in a healthy range of weight, she was quite happy with that, with some counseling around the fact that it's hard to guarantee that you will always be absolutely on a particular number, but a very different driver for eating disorder. So very important to know that this was autism, um, as well as anorexia. And another reason why we might miss not only women and girls, but also some men and boys, has to do with what's been called camouflaging. So many autistic adults and some young people tell us that they work incredibly hard to fit into the neurotypical world to pass as neurotypical, usually because they've been bullied or ostracized for their autistic behaviors. And, uh, they will say that for example, they selected a girl in their class at school or a woman at work who seems to be socially successful and copy everything about her copy, how she dresses, how she does her hair, maybe how she does her makeup, how she talks, what she talks about, copy everything to put on a sort of suit of armor to go, um, undiscovered and not bullied and maybe even accepted and talk to until you can get to that point to develop a friendship. So based on what autistic people have told us themselves, Laura Hall developed, um, a short, uh, questionnaire to measure this sort of camouflaging. And it asks you things like how much do you agree with the following statements? I learn how people use their bodies and faces to interact by watching TV or films or when I'm interacting with somebody, I deliberately copy their body language or facial expressions and you can answer that you disagree or you agree a little or you agree fully and you get a camouflaging score. Now camouflaging is important because we know that although it has some advantages that autistic people tell us about, like for example, being able to go to a job interview or, um, striking up a conversation with somebody you'd like to be friends with, it also has significant costs. So this graph just shows you some of our work where we've found that how much people say they camouflage is negatively correlated with self-reported quality of life. That's true for both males and females in this sample. Um, and we also know that autistic people tell us that camouflaging is is exhausting. And if you imagine trying to keep up a mask 24 hours a day or or all day at school, it's no surprise that you come home and have a meltdown. And also that it erodes the sense of self. So an autistic 16-year-old that I was talking to was telling me about her mental health crisis, which had landed her own hospital. And she talked to me about how when she came out, her friends had really rallied around her. And as she was talking, I was thinking, that's lovely, that's so nice. And then she said, but of course it's not me they're friends with at all. It's the mask I wear. And so all of that love and affection wasn't reaching her because she didn't feel that she was her authentic self with her friends. She felt that they were friends with the masks that she wore. And masking camouflaging has really made me think very differently about the traditional route of social skills training That for so many years was absolutely what was assumed to be a good idea for say, autistic teenagers. Do social skills groups tell them what they should be doing and what they're doing wrong. And if anyone wants to ask about that in questions, I'm very happy to talk about it. Autism's also changed from being a childhood condition and really the, the preserve of child psychiatrists and pediatricians to being a lifespan condition. We know that people don't stop being autistic. They don't grow outta autism. Autism is inherent to how they see the world and how they process the world. And although as for everyone, we change as we get older, most autistic people will live most of their lives as adults. And, uh, we know from a recent study of GP records that over the age of 59 out of 10 autistic adults are undiagnosed. So we really are missing and know very little about older age with autistic people. Um, and it's important to know because we need to know whether the the health needs, for example, will be different. The medical records, um, in the states suggests that all sorts of physical illnesses are worse among those who are who have an autism diagnosis. Um, some of that may reflect, uh, lives that are hard, lives that are stressful. And we have one study where we looked in a, again, a population-based cohort at pace of aging. And those individuals who had high autistic traits, we didn't require a diagnosis because we know over the age of 50 most people aren't diagnosed. But, um, those with high autistic traits had a faster pace of biological aging as well as worse reported physical health. But a mediation analysis suggested it wasn't the autism that was responsible for that worse aging outcome, but instead it was the things in between. So social isolation, poor mental health and anxiety, um, poor sleep and poor health. So not being able to have a healthy lifestyle. Those were the things that led to that faster pace of aging. So there's nothing fatalistic about, as far as we know to tell us that autistic people will have a less healthy old age, but we do know that autistic people on average have a less happy life. That's something we can all change and a less happy life. And being bullied, for example, is for all of us related to poorer mental and physical health. So autism has also changed from us thinking about it as, uh, categorically different from any other diagnosis and from neurotypical development to having a much more dimensional approach. So in the old days, it would've been, yes, you get the autism diagnosis, or no, you don't get the autism diagnosis. But people first became interested when it became clear from twin studies that autism was quite strongly genetic. People became interested in measuring what they called the broader autism phenotype in the relatives of diagnosed autistic children or adults, and looking for little signs, gray signs of autistic traits in not diagnosed, not autistic relatives to try and understand the family treats, try and understand the genetics. And once people started creating measures for autistic traits dimensionally, you could see that actually in the general population, at least at the behavioral level, we're all somewhere on that continuum. So this is the autism spectrum quotient is perhaps the the best known autism trait measure, uh, which is also freely available and happens to be what nice recommend as a sort of first screener to know whether it's worth going further on a diagnostic journey. It's not without its critics, but the, these are some of the questions that you would be asked if you used it. You have to say to what extent you, you agree that, um, I prefer to do things the same way over and over again. I often notice small sounds when others do not, or you prefer to do things with others rather than on your own. And that would be reverse scored, expecting that on average, more autistic people would say they prefer to do things on their own. Although I would really emphasize that and counter the myth that autistic people are not sociable. Many autistic people are highly sociable and, and many autistic people are, are absolute extroverts. Um, and also take the opportunity to counter the myth that autistic people lack emotional empathy because there's absolutely no evidence for that. Autistic people are, um, empathic with others. They may find it difficult to read somebody else's mind in the sense of knowing that somebody else might think something different, but they certainly care about other people's suffering and emotions and so on. So you can see that if you answer these sorts of trait questions, you get a distribution. And you can see here from collected studies, the distribution for males on average and females with the males on average, scoring a bit higher. Now, when we think about a dimensional approach to autism, sometimes, uh, including some autistic self-advocates, we'll say, oh, no, no, no, you can't be a bit autistic just like you can't be a bit pregnant. So I think it depends on the level of analysis. So behaviorally we've just seen behaviorally you can be a bit autistic, you can have a lot of autistic traits or very few autistic traits or anywhere in between. Um, of course, sometimes there's measures at the behavioral level are not getting at qualitative differences. So if you were socially anxious, if you had social phobia, you might say you prefer things to do on your, to do things on your own. If you have OCD, you might say you, you, you wouldn't say you prefer to repeat things over and over, but you might say you tend to repeat things over and over. So there are other ways you could score up on those behavioral items. Um, if we think about the genetic level, you can certainly be a bit autistic. So what we know about the genetics of autism, um, from twin studies, um, is that the genetic influences on diagnosed autism are largely overlapping with the genetic influences on subclinical autistic traits. Um, we also know that for most autistic people, um, the genetics of their autism is just like the genetics of their and our height. It's a product of hundreds and hundreds of common alleles, common genetic variants, which we all share. And some people have more of them and are taller or have more autistic traits, and some people have fewer of them or a different combination of them and are shorter or have fewer autistic traits. It's only in a very small minority of autistic people that a rare mutation that is qualitatively different from what all the rest of us have seems to be playing a large part in their autism. But for most people, genetics of autism, just like the genetics of height, and we know that from twin studies, another way that autism has changed is from thinking of autism as one thing to thinking of autism as many things. So this is pictures meant to show apples and oranges, and one speculation for why we've actually made rather little progress in understanding the biology of autism. Um, and to some extent the genetics of autism. One hypothesis is that we're mixing apples and oranges in our studies that we've actually got a lot of different individuals who all come under this behavioral umbrella of autism, but have different etiological or biological underpinnings. So I told you about the, the genetics, which is again shown here, the very small part of the pie that is to do with, with, um, mutations or de novo new events that are different from the general population and the large part of the pie where it's just a matter of how many common variants you happen to have. People now talk sometimes not about autism, but the autisms to try to recognize that there may be this enormous biological, at least heterogeneity within the category that we call autism. Interestingly, despite the search for biomarkers and ways to stratify or cut up the big autism spectrum, to date, there's been very little success. And the only real distinction that carries weight in terms of prognosis, for example, is the difference between autism with intellectual disability, language difficulties, and autism without intellectual disability. Those two seem to take rather different roads and relate rather differently to the genetic story.<affirmative>, Autism, we can also think of as changing from one thing to many in a different sense. So before I was talking about taking the whole autism spectrum and saying that when you compare one autistic person to another, they may have very different biological underpinnings or etiologies, but now I want you to think about just one autistic person. And I want to suggest that in, in even one autistic person, the origins of different characteristics that make up what we call autism may be very distinct. So traditionally we used to talk about the triad in autism, social differences, communication differences, rigid and repetitive behaviors. And we used to think of those as three sides of one thing that was autism. But while it's true that if you go into an autism clinic and you look at people who have the diagnosis, you will always find that they have all three parts. If you look in the general population, you'll find that actually those three parts pull apart in a lot of cases. And indeed in families too, in families where there's an autistic child, you'll quite often find that Greatgrandfather was an engineer or a proofreader, had an amazing eye for detail, liked to eat the same lunch every day was socially just fine. And then there's aunt, so-and-So who was a bit of a hermit who had one or two close friends, but really found social very difficult, but wasn't particularly rigid otherwise. So you can see different parts of what's come together in the autistic child in different parts of the family tree. And in the same way when we look at the general population and we were able to do this in the twins early development study, we found that, uh, while there were more than expected by chance, children who had all three difficulties or differences, there were lots of children who had only one. So there were around 3% of children who just had social difficulties as rated by their parents, uh, 3% who had only communication difficulties, 4% who were a bit rigid. And these all defined as being in the top 5% compared to your peers. So the largest group are those who have just one area of difference or difficulty, even though when we look at autism, we see everything coming together. And so we've also found with twin work that these different parts of what we call autism actually have distinct genetic influences. So most of the genetic influence on social skills and difficulties is not overlapping with the genetic influences on how rigid or flexible you are. And one of the reasons that that's helpful to know or propose a hypothesis is that historically we've tried to look for one explanation at the psychological level to understand all the different facets of how an autistic person understands the world. But I don't think we need to, because if the different parts of autism have different origins genetically, then why can't the different facets of autism also have different origins in the processes of the mind? So very briefly, these are three different explanations for different parts of what we call autism, even in one person. Um, and I'll just tell you very briefly about them in cases of interest. So the social differences in autism, which include, uh, not a lack of sociability, but a difficulty sometimes in knowing whether somebody, for example, is joking or lying or being sarcastic in knowing how to strike up a friendship, how to say the right thing, how to not say the wrong thing, even if it happens to be the true thing. Those social difficulties are well explained by a difficulty putting yourself in somebody else's shoes a difficulty automatically tracking what somebody else is thinking and knowing, because we've known for a long time that many autistic children neither tell lies nor understand that others might lie. But telling lies only makes sense if you know that something you know, I might not know, or that you can make me think something that isn't true. But if you don't understand that minds have different thoughts, if you can't track what others are thinking, then that's not going to make sense. And that leaves some autistic people very vulnerable, uh, and also very honest, which of course can be a, a, a wonderful asset. Um, then we have on the, on the more non-social side, we know that autism is characterized not only by some difficulties, but also by some assets. And one aspect of, of skill in autism is an amazing eye for detail. Not every autistic person, but on average, most autistic people have a better eye for detail than the rest of us. Sometimes that eye for detail makes it hard to get the big picture, to understand the gist, but still, for example, in this task, which is the embedded figures test, where you have to find the simple shape hidden in the colored, more complex shape. For most non-autistic people, that's difficult because we see the colored shape as a gal, we see it as a whole. But autistic people often describe seeing things as parts, and therefore they can easily zoom in on and see where that simple shape will be. And then another aspect of autism seems to be around difficulty with planning and coping with change. And some of that might be about being very detailed. So even a small, what is to us, a small detailed change really, really matters if that's what you're zoomed in on. But some of it's also probably to do with what's called executive dysfunction or difficulty in those frontal lobe functions of planning, monitoring, being flexible in the face of change, dealing with novelty and so on. And that's often what holds some autistic people back. So working in a university environment, we have many, many students who are autistic and very, very smart, but sometimes they struggle when they come to university in organizing their lives. And it's the organization that really, um, begins to be a problem for them. And the coping with change, the coping with the fact that that lecture actually is happening somewhere different now and you weren't given any notice, and that can just throw you completely. So another way in which autism has changed is from thinking of autism and studying autism in its pure form. So there was a, a fashion for saying, well, we must only study autistic people who don't have language problems, don't have intellectual disability, don't have mental health problems, because then we're studying pure autism and recognizing now that pure autism is vanishingly rare. And Christopher Gilberg tends to say that pure autism won't come to the clinic because if autism is, is the only, um, issue or the only characteristic, it's not a problem. And you can find your niche and you can live very well with just autism. But unfortunately, just autism is very rare and most autistic people are battling with a lot of other things. And it's those other things that make life hard to live, not the autism. And those other things include epilepsy and intellectual disability, sleep problems, sleep problems can be an absolute killer. And yet a relatively easily treated for many autistic people, sensory sensitivities can be, uh, very, very difficult. And that's one of the things in the workplace, um, thinking about that report today, that what, where reasonable accommodations are needed, but anxiety and depression, very common. A DHD, uh, OCD, developmental coordination disorder or dyspraxia, those all very common in autism and can make life difficult and even more important for us to recognize because that lies with society to address stigma and bullying, being ostracized, being discriminated against are all the things that make life hard for autistic people, not the autism. So we know that around 70 or 80% of children and adults on the autism spectrum will have a diagnosed, uh, mental health condition, and many will have more than one with anxiety and depression being among the highest. And we've, uh, learned in recent years tragically that suicide is elevated among autistic people, particularly among women on the autism spectrum and women who don't have an intellectual disability. This is from our longitudinal study in again the twins, uh, early development study where we, uh, asked parents about different sorts of difficulties, emotionals that might be anxiety and depression, conduct problems, uh, hyperactivity. And we asked them at age four, seven, and 13. And the, in these diagrams, each horizontal line is one child, and if they're in the green, they're okay. They don't have problems in any of these areas. And if they're in the orange, they've got at least one clinical level difficulty. And we have a comparison group drawn from Ted's where they don't have autism, and you can see that most of those children are in the green at four. A few pick up, there's some difficulties at seven, some drop difficulties. And again, by 13, most do not have any parent reported difficulties. And then you can look at the autism group and at four, about 50% already have difficulties in one of these areas. And as you go to age seven more, pick them up, a few drop them, but many more pick them up. And again at age 13, so you can see the persistence. And below we've got the cot, twins. Now autism is highly genetic. So many cot, twins of autistic children are autistic themselves, but some are not. And when you look at the cot, twins, you have a perfect control for the family environment for SES and those other kinds of things that of course we know affect children's wellbeing. But here you can see that the non-autistic twins in those families where there's an autistic twin are in generally in the green. And this is some work by Dr. Gavin Stewart, who I have to also thank for, uh, co-authoring the, um, the text, the piece of writing, which will be on the Gresham College website to accompany this lecture. And Gavin's been working very hard on aging and autism, and he's worked with, um, a long-term, uh, aging study, which isn't about autism, but he is just about healthy aging. If you, you're over the age of 50, you can sign up for protect, and every year you can do cognitive tasks and answer questions about your wellbeing. And because we know that most autistic people over the age of 50 are not diagnosed, we've given an autism trait measure, and we look at those who have high autistic traits. And in this Venn diagram, the size of the circles shows the relative percentage of people being affected by sleep problems in yellow, by depression in blue, by anxiety in orange, and the overlap between those. And you can see that sleep problems are much more of a problem for the high autism trait group compared to well-matched peers, uh, who aren't autistic and have low autistic traits. Um, and the overlap of those of those sleep problems with mental health problems is very significant. And I want to tell you briefly about, uh, one particular area of mental health that we think is rather neglected for the autism spectrum, and it's important to, to be thinking about. So with Freya Rumble, who is a clinical psychologist, we've been speculating for some time now that autistic people might, on average be more vulnerable to developing post-traumatic stress disorder. And this is because firstly, we know that autistic people experience more adverse life events than non-autistic people, bullying I've already mentioned, but also assault and other kinds of negative life events. Uh, we also know that autistic people process information differently with an eye for detail. And one of the, um, individual differences in the general population that tends to determine whether two individuals who've experienced a trauma traumatic event, which one will go on to develop long-term PTSD symptoms and which one will not. One individual difference of relevance is how well you can weave your experiences into a coherent story, a coherent narrative. And if you stay rather fragmented and detail focused, you are more likely to continue to have symptoms of PTSD. So that detailed focus in autism might make them more vulnerable to develop PTSD symptoms. There are also a aspects of sensory processing that are important in PTSD, and I've mentioned sensory sensitivities in autism. And lastly, um, how you cope with the natural early stages of flashbacks and so on that maybe everyone would have after a traumatic event. Whether you use an avoidant coping style or a more adaptive coping style also determines your likelihood of developing PTSD. And again, we thought that autistic people who sometimes show an avoidant coping style might be more vulnerable for that reason. So in one study, which, uh, we did with autistic adults, we asked autistic adults to take part if they felt something had happened to them that was negative and that still remained with them, that they felt was a trauma. And, um, in this particular study, we had 59 who, who took part and who reported to us a trauma of a traditional sort. And by that I mean it would qualify for PTSD diagnosis in the American system, the DSM five, where there's a very narrow definition of trauma and it has to involve either witnessing or being subject to something that is either a serious assault or threat to life. So you can see here that, um, a, a large proportion in of the blue slice of the pie are people reporting a physical assault, the orange slice of the pipe, um, people are reporting sexual assault, um, and other qualifying traumas. And we gave these individuals a trauma symptom checklist, A-P-T-S-D checklist. It's not the same as a diagnosis. This was done mainly during covid, so it's done remotely, but it's a, a, a valid instrument to measure your symptoms of PTSD. And we found that 45% of those autistic adults reported symptoms that were in the clinical range. Now, that's a really high percentage in general population samples where they report having experienced a traumatic event like a physical assault around 10% will go on to have persistent PTSD symptoms. So much, much higher percentage here for the autistic people. But the reason that I showed you a picture of a bus when I started talking about PTSD and autism is that one of the reasons I got interested in this area was, uh, an autistic man telling me about his experience of taking the bus to work every day, and then one day the bus having to take a detour because of roadworks and him having to get off the bus in the middle of nowhere. He didn't know whether it was a safe area of London or not. He didn't know how he was gonna get to work, and he was absolutely frightened and, uh, distraught. And after that, not only would he not take that bus to work, he wouldn't take any bus anywhere. And when he walked past his usual bus stop, he would start re-experiencing that fear and have flashbacks of that event. Now, a bus detour would not count in DSM five as a trauma, but I think it was clear that this man was experiencing trauma related, uh, mental health problems. So we were particularly interested in looking at whether autistic people are not only more vulnerable to PST PTSD, but also develop those symptoms following unusual events that most people might not find traumatic. And so this graph, this, uh, pie chart now shows you for the 59 autistic adults who told us about a trauma that wouldn't fit DSM five. So, um, the, uh, large blue segment is bereavement, the yellow segment is bullying. Um, and the, um, the, there's a gray segment, which is, um, uh, difficult social situations, having very negative experiences in social situations. Um, and the orange segment after the blue is their own mental health crises. Um, and of these people, again, 43% had symptoms of PTSD past threshold. So it doesn't seem to matter whether what you've experienced is, um, objectively life threatening. Um, if for you it's traumatic, then for autistic people, the rate of PTSD symptoms seems to be alarmingly high. And one more point on, uh, autism and mental health, before I go to the, the final change in the concept of autism. So this is, um, data from, um, Miriam Martini, uh, working in, uh, in Stockholm using population registers. And this is data from young people between the ages of 16 and 25, um, information about psychiatric hospitalization. And the, the bars are, uh, closest to me. The dark bar is autistic, um, boys and young men, then autistic girls and young women, and then they're neurotypical peers, male and female. And you can see the alarmingly high rates of psychiatric hospitalization. And, uh, Miriam writes in the paper by as young as age 25 years, 22% of autistic, uh, females and almost 11% of autistic males compared to less than 4% of their neurotypical peers had been hospitalized for psychiatric difficulties. So really serious level of mental health burden. So the final change from, um, our understanding of autism is from thinking of autism as a disorder from very much a medical model where we would think about, well, what's wrong with the child? Why does the child not understand the social world to the neurodiversity lens, to a more social model where we understand that the difficulties in autism come about from a mismatch between the autistic way of understanding the world and the neurotypical designed environment and expectations. And so, um, instead of the rhetoric of the past and still sometimes in the states or other countries, how would you save your son from autism? Instead, we would have a, a much more neurodiversity lens. And like these autism, um, self-advocates insist that to talk about curing autism would be as inappropriate now as it was inappropriate when psychiatrists used to talk about curing homosexuality, for example, that autism is a different way of being in the world, is a neurodivergent condition in the sense that it, it diverges from the average, but is just as valuable and just as valid a way of being and encouraging that. Um, some, some employers, as we were hearing about on the news today, are specifically employing autistic people for the many strengths they have, including integrity and a sense of justice and eye for detail, persistence in a task, and so on. Um, and this is just to highlight, uh, some work by a colleague, uh, Dr. Rebecca Wood, looking at what an inclusive school really means. And for her, that means that it accepts the neurodivergence of the teachers and the other school staff. So most of us would think, is a school inclusive? Does it have a good attitude towards children? Pupils who are autistic, have a DHD have dyslexia, but what about the teachers? If the teachers don't feel comfortable to disclose their diagnosis, then it's not an inclusive school. And of course there are now similar projects for autistic police, uh, workforce, autistic doctors, and so on. So to conclude, uh, autism has changed from narrow to wide with a rise in the diagnoses from rare to common, uh, although still underdiagnosed in some groups from childhood to lifespan with much more research needed on aging from discreet to dimensional, and from one thing to many from pure to complex, with a real emphasis now on understanding and improving mental health autistic people and from disorder to a difference. And the challenge now is to hear all voices. The autistic voice is coming into research, but how do we hear the autistic voice from people who have intellectual disability as well as being autistic, for example? And really fascinating to think, looking forward, what are the implications for the future of autism research and improving the lives of autistic people. Thank you very much. Thank you very much, Francesca. That's just stunning. And the, um, unsurprisingly, we have an awful lot of questions, so I'm gonna try and group one or two of them together. Um, there are so many questions in fact that we are definitely not going to be able to cover them today, so I will probably approach you and see if we can perhaps do what we do sometimes and have a follow up podcast where we can discuss the questions which we've not been able to get through. Um, there seems to be a strong correlation between those who identify as trans or non-binary and who are also autism. Have you any thoughts of why that might be? So, So it's certainly true that, that among autistic people, there are many more who either I, I identify, uh, with some, uh, gender identity other than the traditional binary. Um, and, uh, there seem to be more people who are trans as well and vice versa. We don't really know why there's research going on in that area. There are, you can just imagine lots of theories at different levels. So some would say it's a sort of sociological theory that autistic people, uh, are less conformist and more able to be themselves. Um, and then there are people, um, like Simon Baron Cohen who are interested in, in sex hormones and might have a biological explanation. And I think at the moment we don't know, but it's, it's, uh, now a hot topic, yes. Okay. And, uh, two which slightly overlap. Um, one is about the way in which the media generate stereotypical perceptions of autism. One particular question about do you think shows like love on the Spectrum are indirectly fueling that stereotype? And how might we as society respond to that? Um, so I haven't seen that particular show, but I know that obviously in autism is all over the media. Um, it is very difficult. I mean, one of the things that that, that, that we need to be aware of is that, um, research is neglecting that part of the autism spectrum that has intellectual disability. And there's a danger that we also neglect them when we have shows, uh, or, or, uh, documentaries about autism because it's easier to talk to an autistic person who can talk back, but that doesn't capture the experiences of everybody. And I think that some parents of children who have very high support needs and on the autism spectrum feel quite worried or upset when maybe a celebrity has their adult diagnoses and they want to say, well, but, but my child's autism is not like your autism. Their challenge is not like your challenges. So I think it's really about trying to get all voices heard. I mean, clearly there are some TV programs including about neurotypical people that exploitative, um, and certainly any program I've been involved with, it's, it's very, very important that, um, autistic or the National Autistic Society, people who have autistic people's welfare at heart are involved in making sure that that participants really know what they're participating in, for example. So here's clearly somebody from an academic background is saying, okay, you've now got a grant of several million pounds. Where are you gonna put your money? What would be your next big area of this really large number of overlapping Venn diagrams where you think the biggest return on investment might be? Yes, it's a, it's a really hard question and sadly I haven't had that problem of being given that large amount of money. But I mean, I think that one really interesting area that's been under recognized our motor difficulties in autism. Um, and that's not just sort of clumsiness or development of coordination disorder, but somewhat people will describe that when they have a sort of shutdown, which can be something like autistic burnout from exhaustion of coping and neurotypical world, or can be a more short lived sort of shutdown meltdown, that they lose volition, they can't act, they can't speak. And there's also very interesting, but very little research on catatonia of freezing, uh, among autistic people. And I think that's been really under researched. So we've, we've woken up to sensory a bit, although there's still lots more research needed there. But I think the motor part of the puzzle and in relation to that kind of freedom of will and volition, um, I think that be is a fascinating future area. There's a, um, a growing number of people asking about, um, an American charity like autism speaks Mm-hmm, <affirmative> who, who are pushing the concept of cure in autism still even after all of this work. Yes. Uh, how is, how is, how do you feel about that and do you think it requires challenge? So, um, so many years ago, um, the founder, one of the founders of Autism Speaks, who was a grandfather of a autistic young boy with high support needs, um, came to London and gave a, a, a talk where he talked about defeating autism like he had defeated cancer. And that's clearly not acceptable in our views of autism and in our genuine acceptance of, of neurodivergence, autism is not a cancer and autism isn't something you have, autism is how you are. Um, and that's just as valid a way to be as anything else. So we certainly don't talk about curing autism. We talk about curing anxiety, curing depression, curing epilepsy, curing gut problems, curing sleep problems. All of these things would transform the lives of autistic people. But there's, we have no desire to change the autism. Um, often for parents when they're, they are, are sympathetic to the idea of a cure, it's because their child has intellectual disability, maybe self-injurious behavior, maybe a lot of other things. It's not the autism that's making their life hard. I would say it's those other things and we should look for ways to help with those other things. Thank you so much. It was fascinating in every respect. Um, but given you've described so many different behaviors and, and a spectrum and autistic traits, you are talking about such diversity, I wonder how easy or difficult it is to make a diagnosis and what the procedure would be to diagnose? That's a really interesting question, and it goes in some sense to the heart of the complexity of autism. So on the one hand, autism can be, uh, one of the diagnoses that where, where clinicians have the greatest agreement, and people will talk slightly flippantly about the receptionist who works in the diagnostic clinic, being able to diagnose somebody as they come through the door by how they're walking and how they greet them. Because autism in, its, in its most push typical form, is very, very recognizable. What's difficult is that when you then have overlays of camouflaging and learnt behaviors or when you have a lot of intellectual disabilities so that the range of behaviors you can see is not very great, um, or when you have additional complexities, so you have autism and a lot of mental health difficulties, then it can be more difficult to distinguish. Absolutely, there's a lot of heterogeneity within the spectrum. That's definitely true. But also remember that it can be that you start, uh, with the same 4-year-old who is, um, you know, doesn't have much language is a bit aloof, repetitively lining up toys, grows up to be the math professor who has a lot of language, who has a lot of friends, but he tends to monologue about his own special interests as I'm doing now. Um, and you know, the, the same person can transition through different parts of the spectrum. So, and in that sense, we can say yes, they're all, they're all parts of the same thing, if that makes sense. Um, I, I have a grandson who is severely autistic. Uh, he's, he's 19 now and has no speech. He, he's in the states and one, one of the, um, procedures that he's been through is something called, I think it's applied behavioral analysis. Mm-Hmm.<affirmative>, does that make sense? Yes. Um, but it, um, is had I think relatively little effect on, on his behavior. Um, and the, the, the other thing that, um, is perhaps interesting is that recently he had some wisdom teeth removed under anesthetic and, um, be because it's difficult to communicate with him and had him not to do things, he severely bit his lip, uh, because it was anesthetized of course, yes. And, um, nearly, uh, went into plastic surgery. Um, would you have any comments on, uh, This sort of thing? Yeah. So that's very difficult, isn't it? And, and I mean, communication is, without communication, life is so very, very difficult. Um, so applied behavioral analysis, a, BA for those in the audience who might not be familiar with it, um, grew outta the sort of behaviorist tradition of, of response and punishment to train an animal. So it it, it was used with the best intentions to help a child who maybe was just running around the room to settle at a table to begin to be able to learn something so the sitting at the table would be rewarded maybe with a suite, um, and then other behaviors would also be rewarded. And in the old days, negative behaviors would be punished. That doesn't happen anymore. But, um, but there is a large body of thought, particularly in this country, and particularly among autistic self-advocates, that a BA is not respectful. That we, that we, that it looks too much like the trainee of an animal. And it doesn't give people on the autism spectrum a choice in a sense about their behaviors. I I do know parents where their child was just so much all around the room that they needed to find some way that they would sit long enough to learn something. And to be fair, most parents bribe their children at some point. But I think the level of, of, of mechanical teaching makes people feel uncomfortable. And some autistic people have said that they felt they felt damaged by that process. Um, but it is very hard to know how best to try and reach a child who has very, very high support needs. Um, I think that there are more available alternative communication devices now with iPads and things. There are more ways that you can let a child unlock communication of some sort. Um, and that's so important for the reasons that you've highlighted that, that we need to be able to tell people what's going to happen and them to tell us what's going on with them. And I would just take the opportunity to say, I'm sure it's not, may not be relevant to your grandson, but for anybody else who has a child of whatever age, um, with very little language, um, if their behavior changes, suddenly, if they seem very distressed or violent or self-injurious, please check that they're not in pain because we've only recently begun to realize that often that's a symptom of pain. Um, and because the autistic person can't tell us that, for example, they have absolute crippling constipation, um, they will express it in some other way. And that might be like by lashing out, or it might be by by crying, or it might be by biting themselves. So don't forget about pain, um, if somebody's behavior changes when they haven't got any other way of, of telling you. But thank you very much for the example. I'm, I'm going to take just two more questions so that we can be quite your next, Um, hello, firstly. Thank you so, so very much. This is a wonderful, wonderful talk. Um, I was wondering on one of the slides, you briefly talked about, uh, Asperger's becoming something in the nineties. I was wondering if you could talk a little bit about how that's developed from, perhaps where that came from, um, and how that's seen now. And, you know, you're speaking about this wide spectrum. How is Asperger's now viewed in the wider spectrum? I, personally, that was the diagnosis that I had, and I know that I've had trouble communicating that with other people, that that's not something that's necessarily an appropriate, um, way to do it. So I'm wondering how maybe in studies and clinicians, uh, are able to communicate that in different ways and maybe how that also specifically applies to women and girls and, and different, um, you know, more female concepts of special interests and how that translates together. Sorry. Does does That make sense? Yes. Yes. Okay. So I I I'll give, try and give a short answer to capture some of those things. So, so Asperger's, um, was introduced as a sort of experimental diagnosis, um, because, uh, historically autism was so much associated with language problems and language delay, or even lack of language. So when there were some children who didn't seem to have any language delay and yet had all the other characters who were autism people at the time felt, we've gotta study this. Maybe it's a whole different group. Um, the research that happened after that suggested that it wasn't a whole different group. It was part of the autism spectrum. Um, and not different from autistic people who maybe had a bit of language delay but had good verbal in intelligence, you know, later on. So, um, so in the latest diagnostic system, it's folded into this bigger category of autism spectrum disorder with the expectation that anybody who had an Asperger diagnosis would simply be included in autism spectrum disorder, not have to go and get a new diagnosis. Uh, the other piece of the puzzle is that Hans Asperger, who of course was working in, uh, Nazi dominated Vienna, wasn't a member of the Nazi party, unlike all the rest of his department, but has it, there has been a question over whether he was saving children or whether he was colluding with a process of eugenics for, um, uh, um, for a handicapped children perceived to be handicapped at the time. So that's another reason why people are not so keen on naming a syndrome after him anymore. Um, although I think the full story of his involvement is yet to be un uncovered. I just wanted to know, in your estimation, to what extent do modern lifestyles, for example, our largely sugar based diets and our tend tendency to spend a lot more time online impact on autistic people?'cause I, I've definitely found that definitely the, the, um, the online aspect, a lot of autistic people spend a lot of time online and this kind of exacerbates, uh, our difficulties with, uh, your communication and, and socializing. So just how does that, how do, how do these things impact in your estimation on lives of autistic people? Thank you. It's an interesting question. So just, I know it's not your question, but just to clarify, I don't think that screen time could ever make somebody autistic nor could diet. Um, but your question isn't that, I know your question is for autistic people, is the increase in screen time and so on more problematic? I think, I don't think we have the research to know. Um, the research that's been done suggests that autistic people use, um, the electronic media and so on in the same way for the same purposes, enjoyment and so on, as non-autistic people. Um, and it was interesting talking to my autistic students under lockdown, some of whom said they much preferred meeting online. It was much less stressful and they could control their environment. Um, whether, as you say, when you then have to do more face-to-face time, it has it become more difficult. That's something I think we still need to study. But there's certainly lots and lots of benefits to the digital world for autistic people. One of the things I often think about is autistic people often are very, really good at understanding how systems work. In the old days, if you to be an engineer, you had to be physically a, a droid, then that was outta out of reach. But now when you can understand a system and do it all on screen wonderfully, you've unlocked a beautiful mind that was perhaps had clumsy hands. So I think there are lots and lots of advantages, but you're right, we should be careful about the downsides for, for, for everyone. Well, it's, it's been a privilege being exposed to a beautiful mind, I think today,<laugh>, it was, um, a absolute delight to hear you talk. It was a wonderful lecture. Thank you very much. Please join me in thanking professor.