Why we need to rethink the autism spectrum with Dame Uta Frith

[Music] Hello and welcome to Let's Talk Neurocense, the podcast about psychology of Neurodiversity. I'm Dr Daniel Drinkwater, clinical psychologist who works with children and families. I'm Dr Naomi Fisher, a clinical psychologist who specialises in autism and trauma. Together we're here to put the psychology back into the conversation about Neurodiversity. We come from quite different corners. I've spent years working in autism and Daniel worked with all children and families. But we've met in the middle because today Neurodivergence touches all of us. So whether you're a specialist or just curious, we invite you to join us as we talk Neurocense. [Music] Today on Neurocense, we talked to Dame Uta Frith. Uta Frith is a meritous professor of cognitive development at University College London. I personally met Met Uta when I was doing my PhD in developmental cognitive psychology back in 1999-2002. At the time, she was deputy director of the UCL Institute of Conjunction Neuroscience, a post she held from 1998 to 2008. Before that, she'd been member of two medical research council units affiliated to UCL. That was the first time I'd met Uta but I had heard of her before that. Because when I was studying undergraduate psychology, she's a key figure in the development of many sociocovative theories of autism, including theory of mind. Nobody seriously studies autism without hearing about Uta Frith and her research. In the following conversation, we asked Uta for her perspective on how autism has changed. She has an amazing perspective because she's been involved in autism research since the 1960s, before it was even in the diagnostic manuals. We covered the very different atmosphere in autism then and how that maybe contains the roots for where we are now. We asked her opinions on the current way that autism has understood and the positives and negatives that she sees about that. Here is our conversation with Uta Frith. So let's just start off if you could tell us when did you start working with autism and what did you understand autism to be then when you started? Well, I started my PhD in September 1966. Yeah. A long time ago, six, six years ago. And I did my PhD with Artie Humlen, Neil Conner, who really amongst the pioneers to do opera, you know, Bigger's experimental research with children with intellectual disabilities. And autism was really a subgroup of this bigger population. All of them, of course, you know, they were they were deemed to have mental retardation of learning disabilities. And you know, the term has changed from time to time. And it was really an attempt to see how are these children who we can recognize by observation to be different. And so they actually different when you put them, you know, put this question to the test. What is special about them? Many of them had not been properly diagnosed at the time, but that that was just sort of starting. And of course, it was very fortunate that I was at the sort of psychiatry in the hospital where you know, there was a clinic. I think, you know, really people came from all over the world, you know, with with their children there. And Mike Brutter was the authority who could say, yes, that's just kind of autism or no, that isn't. So it was of course a very rare condition at the time. And so it was, you know, strictly defined according to the sort of textbook cases, a part of this idea also there was not just language delay, but extreme language difficulties communication difficulties. I think the idea was said, yeah, there were difficulties not even in if you tried sign language, it wasn't just the speech, so language also there were some questions about whether it was a bit similar to a phasier perhaps childhood a phasier, which was another condition which was of interest then. And dismissed as because we could see it was non-verbal communication difficulties just as much as those involving language. And one of the really difficult challenges for us at the time was how to how to do experiments with these children, how do they how do you communicate what you want. And we sort of tried to understand what it was that they could actually do like having a very good memory and you could work with some and actually test whether that type of memory was different from memory in other, that disabled children. And yeah, so we were very convinced that this was a special group, we should really attend to it. And it was a very small group, you know, there were a few specialist schools, I think three in the London Beach, there was very few children and teachers in each of them. And we were actually worried at the time that we were using always the same children, you know, to do the experiments, which was not not what you should really do. So we were very much, we were very delighted when there was some attempt to broaden the diagnosis into the sort of milder manifestations. And that was very interesting, was very much led by Lorna Wing who felt there were cases that just missed the diagnosis, but probably shouldn't because they felt so much in her clinical experience and, you know, that was very interesting, even into this category. And well, many people of course agreed and eventually this really led to expansion of the criteria. There was race to where, it's not the same, even without the expansion, just making pediatricians, psychologists aware that this could be something that they see in their surgery helped to raise the numbers. So this was quite a good, good thing for us. So you saw it as a tiny, tiny thing really right back, it was very, very rare. Many people might not see it. It was still rare, it was still. Yeah. It was a, a gradual expansion, you know, sort of from one diagnostic manual to the next, it was what an expansion and then another one and then another one. And I think that there was of course a big sort of step change, then we thought about us, Berger Sundram, because that was the first time that we went outside the ideas that there was always intellectual impairment. Yeah. That was a big step and maybe the beginning of something that led into all sorts of directions that we did not anticipate. So again, we were absolutely delighted to see children, it was always children. Who had good language, because that was the mark of us Berger Sundram, they actually have language. But there's the pragmatic difficulties in a very difficult obvious way. They would speak very, very articulately and you know like if professors, but you knew that it wasn't quite a sort of meshing of, you know, a kind of conversation. So that was a group that was incredibly interesting and of course adults were right away classified by people like Lorna Wing and Dick Brutanter, for example, it mostly was really said yes, they come to the board, they are to the clinic. So many people think it's a skit sword phenomenon, it's actually skits of phoenia and it's and you may be not, maybe there was this development at least, really good only get it. Of course that was the problem. When you have adults, you really, really are at the mercy of self report on and very biased as it is and or report if at all available from parents or teachers which usually wasn't available. So you have to guess whether this was truly a developmental disorder. I mean, I felt that this was recording on to very muddy ground already as soon as we could not have a good idea of the early beginnings in early childhood when it was just adults. Now, we know only too well that you can sort of reconstruct childhood memories and say, "Oh yeah, yeah, yeah, that was a sign I was already, you know, autistic, lonely as somebody had seen me then." it's just not what we would need for proper, you know, high science for research. So I really think this has been the sort of story of the change of autism and I knew it in the 60s, in the 70s when there were more more cases but then we had children with very good language and from then on there really was an incredible increase in cases which has actually gone on until now it doesn't seem to show any sign of stopping no not at all that's really interesting to hear just how different things are isn't it how much things have changed now because now I think it would be uncommon for even a mainstream school to not have a couple of children who would be identified as autistic and you can't claim a reduced awareness for anything you know overlooking a diet nurses it's just incredibly high awareness and also de-stigmatisation has been a sort of movement and we now find that there are actually unintended consequences and tell us a little bit about what those unintended consequences are you think yes well because autism is such a fascinating condition I mean I can see that for myself it really has attracted the kind of artists, the creative people who write books and make films and what has been portrayed has been a kind of fictional image of something that probably you know is an icon like that this sort of genius person who is socially completely incompetent essentially and it's very meticulous and analytical and logical and we see these sort of heroes in in fiction like these detectives or scientists who are celebrated for their you know special autistic persona and this is a fiction but it is a very powerful kind of icon and it is part of dissigmatisation it became a incredibly desirable diagnosis to have especially the Asperger syndrome it was like every parent you know if their child was autistic they would rather have it called Asperger syndrome then autism it was very very clear in the sort of 90s you didn't really like like the words high functioning and low functioning I mean we could have used the word high functioning autism for those with high intelligence and I did that because it seemed to me somewhat different group from the one that we had studied earlier but people felt everyone was high functioning even the totally non-verbal people who you know suddenly appeared writing books and things like that which I think must have been at conscious and to some extent also unconscious let's call it fraud I mean you know I make believe I'm sorry to say that I just could not believe any of these accounts of course there you know I don't have any proof or anything like that I just have I'm you know you know about the phenomenon of the facilitated communication and that was late because these outpourings of non-verbal individuals who was like the doses of autism which basically said you know we're just like you but we are really really suffering and really you know please understand us and that kind of thing or you know bring it deep philosophical thoughts and ideas that made people you know really astonished so I think this is unfortunately you know just it was spright very easily to then the also flourishing into the online presence of these people and so on so I think that that has been a really a reason for the diagnosis becoming so desirable but as you know that was a silly big question is as per Gassandra really the same as classic autism or non- I think we still don't really have the answer to that but anyway the diagnostic label disappeared because the idea was yes they are the same they are it's one spectra you are you know really embracing this spectrum idea so that was the biggest change I think over time from a category from rare distinct and really you could observe you could study you know you could properly you know it was it was heterogeneous group but not as heterogeneous as it became with the extension of why why do you why do you think those changes happened what the drivers and there has been I suppose there have been many different reasons and one of them I've already talked about the idea that you know you had a fiction of a sort of a genius mess as the someone person you know the misunderstood socially awkward person which had a cultural influence on people's thinking and they could somehow they felt there were lots of people like that around them and they perhaps would identify themselves too quite easily if they were looking for an identity so that it seeped into both you know I mean to general culture which includes also all the researchers and the professionals they also absorbed it and it it just came to the stretching of the spectrum and with it the widening of the criteria or what I would say the dilution of the criteria which you know you could call it lowering the threshold for being diagnosed and I think it did attract people who wanted an explanation for their maybe general distress or anxieties especially social anxieties so they would say oh that's like me you know maybe that's exactly what I have you know this kind of problem and professionals too fell into this same line I don't hesitate to call it a trap but it seems you know at one point you could look from the outside as a kind of trap of falling in with this cultural meme of autism which was you know this this very widening and also de-stigmatisation of a very serious psychiatric condition so I think what was really bad about this widening and lowering threshold is that the the credibility of the diagnosis has been really really severely hit if not destroyed so I think it may be that in many cases autism becomes a label for any form of of social exhaustion or anxiety and then the term just loses its power and I think the real culprit in my view is the very acceptance by clinicians and and researchers of this concept of masking call us a bit about that I think this has been a very dangerous development because there is no way of falsifying the idea that if somebody says I am masking that you can say no you are not because all it is is depends on your on the subjective report and of course I should say it's not the masking itself that's being considered a problem it's the exhaustion in people who say that they are masking all day they are not feeling authentic and afterwards therefore they feel completely exhausted now that of course can have very different reasons we know about fatigue chronic fatigue chronic anxiety that can be part of you know a functional neurological disorder and it seems to me very plausible but not not yet at all researched I think that this cultural meme of autism has inserted itself amongst other possible concepts like you know chronic fatigue syndrome so you could also have autism because you learn about it and you can, in some sense, feel yourself identified with people, have it. You find a peer group, a support group that you can belong to, which is all probably helpful and a good thing. And the diagnosis seems to give you an explanation for your distress, your anxiety. So these are kind of reasons I would rather speculate about than, you know, doing anything else that have late choices, enormous increase. And it is very interesting that it is mainly women who seem to seek the diagnosis and who make up the large proportion of the increase in later ages, you know, the kind of thing that you don't know what the actual early development was like, 10 year diagnosed, a neurodevelopmental disorder at that age. I think it is a big doubtful, it is going to be very difficult. And it's very doubtful that nothing would have been noticed by professionals in early childhood, at all, given the heightened awareness that we have at the moment of the condition. So masking this, that's in my case, a kind of new villain to be fought. And I said, of course, the reason that it's so strong at the moment is that we just don't have a biomarker after all these years. And I think the most desperate thing we need is this biomarker. If we don't have it, you know, we rely on sort of really very, very dicey submissions, and of course, you know, what we call clinical intuition and the sort of means of, of, of you, of you, structuring interviews, which are all, I think, infected by this idea that, you know, autism is this, you know, being a umbrella category for all sorts of things. So I really think we do need to go back to proper, hard line research and really, I just wanted to jump in because I ordered your book. What is this? It's playing in the, oh, yeah, 2016, 2000, and too, I think was the second, second edition. Right. And I've just, I've just dipped into it so far, but I'm finding it really fascinating already. And there's a bit that I've just, earmarks here from the kind of preface at the beginning. I wondered if you would mind me reading out a bit about what you'd said back then. Links to what you're saying there about the biomarkers, which I just think is fascinating to kind of think about where we were back then. And you said, autism is now firmly established as a disorder of the development, mind and brain, what a relief to be able to state this without if some bugs. Long ago, this was not, not sure at all. And while writing the first edition, I struggled to remove the lingering uncertainties, but this has all changed now. And you do, you do go on to talk about how there's lots of uncertainties in the research and the bio, you know, did get around biomarkers. And I get the sense having not read through it yet, but I get the sense that you're going to give us a really objective, balanced account of the biological research at the time. But I just wanted to reading that back now about this kind of, know if some bugs are really, is there a disorder of the development mind? Do you still feel like that? Do you think anything's changed? What are your thoughts on that? I think that's what you might still still stand by that, I think. But it is astonishing that we don't know, you know, that despite all the biological research has been done, then we don't actually know the causes. Of course, the causes are predominantly genetic, but it's so complex and there are hundreds of genes all working together, either, you know, preventing the manifestation of autism, making it severe or not. We have, you know, idea how to really study it. Now, I wonder whether one of the reasons that biological genetic research hasn't, given us the biomarker, maybe that the diagnosis is this huge umbrella term of autism, just makes it impossible because you put together people, shouldn't be together. They all have different, very different phenotypes. Obviously, they're very different genotypes. I'm very keen to revive the old idea of finding subgroups. You know, it's been attempted from time to time, but it's actually never really succeeded very well. I mean, at the moment, I think one easy distinction to me, I think that that is so clear is that the early diagnosis and the late diagnosis are different population. At least you could get people to agree on that, I think. And maybe they shouldn't be given the same label, but that's another question. I think that within those two big subgroups, you really need to get phenotypes that are still to be found out. You know, that's where you have to have science. You have to have good testable hypotheses as to what could be the underlying factors. As a psychologist, I looked at cognitive level description, trying to see if one could phenotype somebody in terms of their cognitive problems that they had. Now, of course, you know, even the word deficit, it's very difficult at the moment, part of this mystigmatisation. I think that is one of the interesting things that you can say with the early diagnosed children, the ones who have very likely intellectual impairment, that is, you know, absolutely correct to talk about intellectual impairment, to really study that and see whether that is really part of the autism or something, just an add-on, which I think is a possibility that should be researched. I think we do have these other children who have very clear symptoms over degree at an early childhood, but don't seem to have intellectual impairment. So these need to be studied, I think, really, really studied. And I think we need to also compare those late diagnosed people with early diagnosed people. That's not never really been done. I mean, it is astonishing that it is so much dominated by women. And I think the idea that this is all to do with catch up and at last, women are being considered is quite very questionable because there are disorders that are, you know, sex specific, not specific, but we will have predominance, males, or females. You know, I think it is very strange that people say, at last, you know, the tend to women who may be autistic, they've been hidden, they've been overlooked, they've been ignored, we've got to be biased. I absolutely have no track with that because there were always girls, there were always girls that could be seen even in the very rare cases that we saw at the beginning, it was this one to four ratio, which now I think is correct to say it's probably one to three. That's for early diagnosed cases, which I think is the epidemiology confirms. But for the late diagnosed cases, it's completely the other way around. And when you come to look at the whole population, you know, early diagnosed, the late diagnosed, it suddenly looks as if it was as many female as male cases, but that is a distortion. It doesn't mean that next decade we have early diagnosis for everybody and it is going to be one on one, not, I don't believe that at all. But it's a test, what's with this? And I think it is very interesting to look at possible subgroups in these older diagnosed adolescents and young adults, even older adults, and see what on Earth is going on. And you know, what they like, I don't think that has been properly done yet. It is very. It needs to be done with proper research and not just reliance on sort of qualitative, you know, subjective self-report measures. I think that's just not good enough. I wanted to start with a change that you've noticed that there's more kind of qualitative research now, more of a focus on people's subjective lived experiences. So, yeah. I think that is tending to be the case. I think it is very clear that, you know, hardline research, I got rigorous research, has sort of almost abandoned the high intellectually impaired group and they've become overshadowed so experimentally, have been really happy to study these intelligent adults that can do some brain scanning, they can do all sorts of sophisticated experiments and it seems that that sort of been done without necessarily questioning all these people really are, whether they are different subgroups to be considered. So instead, I should say it as well, I should say, research is being done that I would just not call vigorous, that that seems to be very much to do, yes, this bus word, lift experience, that is incredibly big reliance on this at the moment. I'm not absolutely sure why, because these people do not speak for those who can't speak for themselves, for example, but you know, it is taken as a source of objective fact, yet we all know, I think, that it's actually very difficult to reflect on yourself and what you feel. I mean, you know, we are all influenced by what going on around us, we are all snapping, snatching at that sort of bits of information of what other people think about us. In order to understand what we think about ourselves, so what we say about ourselves is not a pure, you know, one source authentic, lift experience, I mean, the lift experience is like a construct from the whole of society. So I feel it feeds into the now, you know, available autism mean, but it doesn't mean to say that that's the correct thing if we look at possible reasons for, you know, anxiety, distress and lack of what is it authenticity or identity search, which, you know, could be themes for studying these particular subgroups. And when you just, for the listeners, when you're talking about rigorous research, can you just tell me a little bit about what you understand, what rigorous, what does rigorous research look like for you? It's slow, yeah. It needs a very, very good working out what your hypothesis actually are. You need to be able to falsify your hypothesis. There's nothing wrong with having a favorite theory and you're happy when you can confirm it, but you have to be aware, of course, you might be wrong and we need to change tack. You really need to have comparison groups, which have to be very stretchy control. Now that's really, really difficult. You need to control for, you know, socioeconomic status, educational, level, of course, age, all sorts of things, which you want to keep away from what you're actually studying if you're studying any psychiatric conditions. You should compare one psychiatric condition with another rather than, you know, take it from the neurotypical population just randomly. Shortcut, it's not quite the same thing. I mean, you may find that you're studying people who have very general psychiatric problems. You can't really specify exactly what it is. And that would be interesting, you know, to find out more about. And that's where you should say, well, the ones I call autistic as opposed to skids or it or depressed are different. And that would be a start, but you may find, oh no, they're not. You may, you may well find that you have people who have a more general vulnerability to psychiatric mental health conditions. And that could be anything that they might, you know, in a sense, latch on to to explain their problems. You could find that or you're or not. I don't know. I think these are the kind of things that need to be tackled very seriously. And you wouldn't get the answer tomorrow. No, you mean we're not really asking those questions, I think, that they're not being asked at all. Yeah, I'd say. What do you think needs to change going forwards? What would you like to see change in the world of autism? Well, a part for going back to do hard research. I think it would be very interesting to look at these people who are sort of desperate, the on the waiting list to be diagnosed. And who they are. And I think that would be an important thing. I think it might be also important to try and do something about the cultural, um, misinformation, idea of autism. I think it's misinformation because it really has somehow really changed the original ideas. It would be interesting to have more out there on the internet somewhere sort of questions thing. Um, you know, what do you mean by neurodiversity? What is it all about? Can we really talk about this as an entirely good thing? Is it really possible to make reasonable adjustments in society to remove current problems? I mean, I'm thinking, for example, of the idea that a lot of the new autism seekers are talking about their sensory issues. And you're children or adults, I've noticed that it's sort of like a big deal is sort of coming to the foreground. It is not originally. Why has it coming to the foreground? I think it is sort of a, again, not researched area, terribly, terribly subjective. It's something that feels like a basic problem. Like you can't see very well. You know, it's a little bit like that, but it's not like the truth is not a hearing or seeing very well or too much. It's actually true is how you interpret what you perceive. So that's thing that needs to be researched. And I think it's so, to me, so naive to think that just giving these air defenders or silent rooms, you were doing the right thing, you're actually removing the problems. That is surely not the case. And I would really like to know what the people with the air defenders and the silence basis actually think about it, whether they feel yes, it helps them, which would be interesting. It could be also that what helps them is the acknowledgement that they have a need, rather than the actual silence or whatever it is. And so I think that would be an interesting bit of research to be done. And maybe it would be, it would be good to say, no, this is not something that can be simply remedied, like giving a wheelchair to somebody who has a broken knee. And the bit that I found really insightful from you, who's thinking about your long career, is that there have been changes and there have been good reasons for this concept of autism to shift and evolve and expand. And that really made sense at the beginning. And then I wonder if what we're saying is that the pendulum maybe has swung too far the other way. And there's now all of these unintended consequences that are quite difficult to acknowledge and seem to be hard to get out sometimes in our current cultural moments. Yeah. Yeah, yeah, that's certainly true. We were the best intentions. This is being done. And I think so, the researchers who I'm now accusing of not doing hard enough research are again, doing their research out of a very strong sense of compassion. Yeah, I think. If you are a hard-knowsed researcher, you should suppress, you should suppress your compassion. I keep going. I think for the time of asking your hard questions. I think otherwise you will really be very much in danger of circular confirmation. and that is really the big problem. And it is a dilemma. It's a sort of moral dilemma. It's moral dilemma. And also I think what I'm hearing from you is it's a scientific dilemma, isn't it? Because-- Yeah. --the unintended consequences have meant that we can't-- we're not actually researching those-- that group that you started with in the 1960s and '70s. They still exist. But we're not actually-- I don't know how much further we are on in understanding them and their needs. And this very sad thing that we don't have biomarkers, how can this be after all these years, after all these enormous investments in this kind of research? I'm very disappointed by that, but it just tells you what a really complex thing the brain is. And even more complex development of the brain. So the answer to that question may be very different if we're talking about the tightly defined definition of autism decades ago. Or the people sitting on the waiting list waiting for an assessment now that you referred to. So they're quite different populations for us to be asking these questions about, aren't they? Absolutely. I think it's all very much to do with-- since it outside the autism story, like the access to the internet, you know, you self-diagnose, which you can do for other conditions too. And it's a good thing or not, you know, it all remains to be seen. And yeah, I think these sorts of changes that also have to do with the idea of not wanting to miss a diagnosis when you should give it, you know, being airing on the site of false positives is considered not much of a problem, right? The real problem is generally considered not for all diagnosis, you know, physical, mental, all. If you missed one that you should have taken seriously. And that's where you get the lawsuits and all the sorts of things. And interestingly, on the other side, you know, the false positives will also be harmed. But it's considered that harm is sort of negotiable somehow, strangely. And I think that's very, again, a culture of factor, which is completely outside the image of autism. So it's kind of pushing people towards diagnosis, pushing clinicians towards diagnosis because we don't want to risk being the person who misses something. Yes. Yes. Yes. And we don't really see the risks of overdiagnosis, of diagnosing more people. Absolutely. One thing to do is to say, let's look at the, the possibly not-so-good outcomes of this. The negative outcomes of diagnosis, I'm not sure that that's a research that would get funding right now. No. I think it might already be happening for cancer research. You know about the idea that best cancer has been one of those cases where people went into the overdiagnosis drive. So that quite a few people have, you know, quite difficult times, you know, with treatment. And it wasn't necessary. I think that is a little bit of idea that that's not a sellier good thing. Yeah. I know that that's something that Susano Sullivan writes about in her book, The Age of Fragments, and I do speak about the parallels. Yeah. I like her ideas very much. I think it's very, very important. And I know also that many people will be very much on the other side, of course, and they're saying that we have no way, there is no danger of overdiagnosis. You know, it would be sort of like that. What would be the end if the whole of the population would be seen as a need of psychiatric and psychological help making psychiatrists and psychologists even more important? Yeah. Yeah. That is what is the end. It's a good question, isn't it? Where does this go? Yeah. The ever-expanding autism spectrum continues to expand. What's the next big step? Yes. Oh, what kind of. Uta, thank you so much. It has been fascinating to talk to you. I'm not sure. You've been really, really fascinating. I'm sure I speak for Danny as well. Yeah. You've just brought up lots of things. So much. It's such a privilege. Absolutely. Well, thank you so much. Thank you very much for listening to me. OK. Thank you, Uta. Thank you. We'll be later. 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