The World's Leading Autism Expert - Professor Sir Simon Baron-Cohen

31:01And you could argue we should be providing treatment for conditions or disabilities that cause human suffering but autism you know by itself i don't think it causes human suffering

31:15Francis Foster:i don't think we should be trying to prevent it i'm not i'm certainly not suggesting that we should be trying to prevent it and i'd like to make it clear i do not want to put autistic people in camps and the reason i'm asking you this is this is why the conversation about the range of the spectrum was kind of important right because i don't think there are people who want their child to prevent their child from becoming Thomas Edison or Elon Musk. Right. But there are forms of autism or people who are autistic with a bunch of other things that really do suffer a lot. And I have seen it with my own eyes.

31:48Francis Foster:Yeah, yeah. And so the reason parents might be asking that question is they may want to help their children avoid that more extreme version of autism that really does not only make the child suffer, but everyone around them suffer. So it brings us back to the first question you asked, which is what is autism? Right. And I was struggling to give a concise answer. But the reason I'm bringing it back is because I would say autism in a pure sense involves the social communication difficulties, the differences we talked about with excellent attention to detail and so forth. What you're referring to are more like learning disabilities, maybe language delay, and a lot of other things.

32:34And autism often co-occurs with these other things. And treatments, even prevention, you know, epilepsy, for example, wouldn't it be great if we could prevent or treat epilepsy, even though that's quite common in autism? So it's all about sort of separating autism itself. You know, autism isn't defined by epilepsy, but epilepsy is more common in autism. So that could be a target for treatment or prevention. and it's just about being careful about you know what are we trying to treat or what are we trying

33:06Francis Foster:to prevent but but if autism clusters with all these things and if there's that more um more disabling version of it yeah that's where some people might have questions about is there anything environmentally that we can do yeah to avoid that yeah i think that's a fair question it is and you You know, amongst treatment researchers, we're just very careful to really spell out what is it we're trying to treat. And so, again, another statement on our website under our values is we don't try to treat or cure autism, but treatments might be very relevant for the co-occurring conditions that cause distress.

33:50Like anxiety, for example, is very common in autistic people. Why should autistic people have to live with anxiety? So if we can find a treatment for that bit, that would probably be welcomed by autistic people. And the way we check ourselves, actually, is not to think that we researchers have got the answer to what we should or shouldn't do. We talk to the autism community. So we co-design studies with autistic people, with parents, with families, to really check that the research we're doing is actually in the interests of the autism community

34:27Francis Foster:sorry if i'm being difficult all i'm trying to get is let me let me put it in simple language if i can if i have a three-month-old baby yeah and it's really you know if i don't want them to be severely affected by autism and all it has all i have to do is not feed them carrots then maybe that would be useful information irrespective of you know our love and appreciation for and non-discrimination do you see where i'm getting that i do i do um i mean i think you used the word severe and again you know we have to decide what is severe and what isn't um if we're talking about say a learning disability uh it may maybe that is something that we do need to kind of provide intervention for.

35:18Francis Foster:So do we know any of that? Do we know if there are environmental factors that are actually avoidable for parents? I don't think we're there yet. I think the US government has just released a lot of money to investigate this. And I think some good science will come out of it. I think one of the challenges that comes with this debate, and as somebody who's worked with autistic kids, I was teaching for over a decade, is, again, it comes back to, I would argue Trump's imprecise use of language, the term autism. So as Constantine said, if somebody is very high functioning, like Elon Musk, incredibly talented, I don't think most people would have a problem with that.

35:57Well, maybe Democrats, but we'll part that to one side. But if like I used to work at the start of my career with nonverbal autistics who essentially are going to have to be supported for the rest of their life. I remember there's a footballer, Paul Scholes. his son is non-verbal autistic and I saw an interview in which he I mean he's not the most emotional man but he was on the point of tears where he said I worry about my son when I'm gone yeah because at the moment we're the only ones who can look after him right and this is a man of great financial means most parents don't have that yeah so I think that's really what we're talking about is the non-verbal the autistic children that will never be able to live independently Yeah.

36:39And we like to think we live in a civilized society where people who may never live independently, they should have the right to support, to high quality support. And the reason why that parent is probably worrying is because the reality is that our society doesn't necessarily provide high quality support, either for those individuals who have very high support needs or even for autistic people, we called it Asperger syndrome earlier, but autistic people who don't have a learning disability but who might really struggle even with everyday tasks like getting the laundry done and going shopping and cooking and looking after themselves.

37:25So there's a real need for better support services. um yeah i think it's very common it's not just that one football player a lot of a lot of parents kind of worry who's going to be looking after my my autistic son or daughter when i'm not here so it's a real worry it is a real worry it's a real challenge because when i was teaching i always felt a real pang of empathy for those kids because you'd see them on the playground and they'd be at times isolated whilst other kids would be playing around them all because they weren't as socially you know deft as the other children they would be you know made fun of you told this horrible story about the child getting bullied yeah and so as a parent or as a teacher as an educational professional it's it's that balance of realizing that the individual has to learn to fend for themselves and they have to be prepared to enter the real world yeah but also yeah you want to protect and support yeah i mean that's why again the first question what is autism I started off with disability because autism does entail some disability.

38:33It's not the full extent of autism, but it's there. And if someone's got a disability, then they have a right to safeguarding. Anyone with a disability has vulnerabilities. So we think of autistic people as vulnerable. And that vulnerability could be bullying. you know a lot of schools say that they have a policy of you know zero tolerance for bullying we know it goes on when the teachers are not you were a teacher yeah but when the teacher's back is turned they'll be bullying or outside the school gates they'll be bullying and it's tragic actually to kind of talk to autistic people and ask them what was your experience like back at school and a lot of them give this account that they were bullied they were excluded they were mocked they felt very isolated they weren't invited to other kids birthday parties and the result actually we need to talk about it is poor mental health that the majority of autistic people are not only autistic but they end up becoming depressed anxious just feeling quite lonely and isolated and some of our research now is focused on suicide prevention um you know that we discovered through our research that one in three or one in four autistic people have planned or attempted suicide you know it's incredibly high rate um you know and you know we published that work in 2014 almost as a wake-up call to the government saying if you leave autistic people without the right support whether it's kids at school or teenagers or adults, this is what happens.

40:23I think two-thirds in our study, two-thirds of autistic people had felt suicidal, but one in four had gone even further to plan or attempt suicide. So it's a sign that things aren't working for them. It's a sign that our society, even though there's talk about neurodiversity and acceptance and respect for difference, you know, it's not there yet. We can go a lot further. And also, I sometimes think the way that we frame autistic people, they go, well, they're very low in empathy. You go, they're not. I've taught autistic kids. They're not low in empathy. What they struggle with is understanding people's emotions.

41:01So I think we also need to kind of reframe the way we describe them because sometimes when I hear people describe autistic people, I'm going, this is someone with autism. They're not a sociopath. Yeah. I'm glad you've mentioned that because we've talked about the kind of pattern recognition systemizing skills. And we then did also touch on the social difficulties. And underneath the social difficulties, one thing that we've been looking at in our research is the ability to imagine what someone else is thinking or feeling. So that is one part of empathy. in technical terms it's called cognitive empathy but being able to sort of read people's faces interpret people's tone of voice or their body language kind of read between the lines in a social situation to imagine what someone is thinking or feeling that's an area that autistic people struggle with but there's another bit of empathy which is once you know that somebody else is feeling something, do you have a response, an appropriate response to how they're feeling?

42:10Autistic, that's called affective empathy. And autistic people seem to be absolutely fine at that. So for example, if an autistic person hears that someone else is suffering, it upsets them. They're having their, you know, the appropriate response and they want to rush over and help them. You know, so they're not psychopaths, as you say. And in some of our work, we've actually contrasted psychopaths who are also known as antisocial personality disorder and autism, almost like mirror opposites. The psychopath is very good at the cognitive empathy. That's how they can manipulate their victims. But they don't have the affective empathy.

42:52They don't have the appropriate emotional response. They don't care about how the victim is feeling. And autistic people it's kind of the other way around that they have trouble reading people so they don't tend to manipulate other people or deceive other people but once they know if it's pointed out to them um you know how the other person is feeling they um they care about other people so they are caring i think that's what you were trying to say yeah look starting a business is exciting But it isn't easy. It's not just logos, merch and big ideas. It's late nights, awkward first sales and wondering if your bank balance is going to survive until Friday.

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45:17So let's talk about that a little bit. Yeah. So a number of things to bring out. You're right that for the history of autism, which goes back to the 30s or 40s, boys have been diagnosed more often as autistic. So clinicians have got used to sort of seeing boys in the clinic. And they tend to be things like lining things up in patterns or, you know, finding, getting upset if things change in their routines. It's a whole set of kind of characteristics or symptoms that seem to kind of pick out someone who's an autistic boy. And the question is, you know, now that we're starting to be better at diagnosing autism in girls, things are changing.

46:09more girls and women are seeking a diagnosis you know does autism look differently in them um and you know you see the same sort of traits like an obsession or you know or a very strong interest in a particular topic but with a boy it might be trains or vehicles with a girl it might be reading reading literature you know where they're read they're just immersed in the world of books, but they're doing it all the time. So you still have this kind of laser focus, but it's showing differently in girls and boys. Girls might become, or women might become more interested in, I don't know, animals, for example.

46:54Not just their own pet, but maybe lots of pets or rescuing injured animals. So the very strong interest is there, but it's coming out differently in an autistic girl compared to an autistic boy but it's also as well because what part of as teaching autistic boys there's a certain you can see when there's a frustration they act out you know the the probably the politically incorrect term is you know they melt down or the you know they just they get so angry and frustrated yeah you don't see that with girls because girls are far better at masking yeah absolutely and that seems to be a mixed blessing because if you can mask that you're autistic that might mean that people you're included more you know that um you know girls who are masking or it's sometimes called camouflaging they might be sort of invited into social groups because they seem like everybody else whereas for someone who's not masking they seem so different that perhaps they're excluded or ostracized.

47:59But the double-edged part of this is that by masking, you're not really being yourself. You're kind of pretending that you're not autistic when you are. So under the surface, that person might be feeling high levels of stress, but on the surface, they're acting like they're fine. And that could actually lead to poor mental health. And, you know, interestingly, we find very high rates of poor mental health in girls and women who are autistic. even higher suicide rates or suicide attempts in autistic girls and women than autistic boys and men. So masking, you know, I don't think I would encourage people to mask.

48:42You know, I think it's really important that people should feel comfortable being who they are. And by masking, in a sense, we're almost sort of going along with this idea that autism is something bad that you need to hide and we want to de-stigmatize autism well one of the things about uh that is actually you know

49:02Francis Foster:i feel that you know awareness is a term that's brought way overused for lots of things but actually when it comes to autism um if you know autistic people one of the things about them is they're actually fundamentally really really decent people yeah there's a kind of ass i call it aspie pureness which is they are maybe because for the reasons you gave that they struggle to read people's emotions therefore they can't manipulate but i don't think it would occur to an autistic person to manipulate someone that is just not how they think generally in my experience they're very principled they're moral people if there's some kind of moral panic going on in society the first people to say this doesn't compute literally will be autistic people because they're like well this just isn't true i don't care about your feelings yeah and that's a really important thing to have in society no i agree and i think if we have that awareness of the way that autistic people are different and actually really good that will make it easier i think for people to relate and to to make them included yeah um and that certainly has been my experience yeah yeah so i think if you were an employer for example and you're thinking who should i employ this autistic person or the non-autistic person i think what the autistic person brings is that honesty you know they they like to know what is the job and they like it to be very well specified not ambiguous in some way and then they can just get on with it and do it in a kind of perfectionist way because of that attention to detail but they're not going to be sort of lying and cheating and pretending that they're working or um you know getting into office gossip or you know playing those sorts of mind games you know that is the refreshing part about having uh autistic people in our community is that they are very honest and you're right that hand in hand with that is is morality um you know they tend to tell the truth um you know they tend to expect others to tell the truth and are a bit surprised you know the non-autistic world seems to be full of deception and white lies or you know cheating that can also leave the autistic person quite vulnerable again that you know many autistic people will report that in their lives they've been exploited or deceived by others you know you were a teacher but you know that i think i describe in the book an example of a child where the other children in the playground say can i see your wallet and the autistic kid thinks okay here's my wallet and they run off with it you know a non-autistic person would see the trap that they're walking into and you know they'd be a bit more wary and autistic people can be manipulated and exploited and for that reason again we need to think about safeguarding well on the point of employment it's actually something it's great because like i say you're the world's leading researcher in this area we know that autistic people really struggle to find and maintain employment yeah and not just employment but from what I know also often struggle to run a business for various reasons you know they they struggle in the world of work let's say yeah and I'm sure a significant amount of that is to do with employers not understanding how to employ them properly and they'll probably be part of that which is also to do with certain handicaps that they have certain things that do hold them back but if you are if you are to look at what the strengths artistic people tend to have in general and how they might be used by employers and also the challenges they face and how those might be compensated by someone who is an employer listening to this.

52:42Francis Foster:What would be some of the tips and tricks that you'd give? Well, if I could start with the fact that a lot of autistic people struggle to get into work, that probably means that there's even unconsciously, there's a kind of discrimination going on. So imagine you two are on the hiring committee and I'm the candidate. Often, traditionally, we expect applicants for jobs to make eye contact, to have fluent communication skills, to be a good team player. All the qualities that you might list in the job description, they turn out to be a lot of the areas of difficulty or disability. so it's almost like saying we don't want this kind of disability in our workplace so one implication is we need to change the way we hire people you know and there are some companies who are now you know in order to be fair to autistic applicants for jobs they're they're giving them tasks to do in the interview it's not about it's not the emphasis isn't on social skills and communication but it might be on you know here's a problem can you solve it you know and autistic people might be very good at that you know maybe that problem is related to the job that they're applying for so that the employer can actually see their problem solving skills which often include logic for example being you know very logical about things but i think you're sort of saying that what what's the benefits of having an autistic person in the team and also what are the adjustments employers can make because i i think there is some nuance to your point about you know eye contact and all these other things because if you're hiring an IT engineer yeah then shaking hands and looking people in eye really doesn't matter exactly if you're hiring someone as a salesperson actually those skills do matter yeah and the fact that an autistic person finds those things more difficult actually is disqualifying for that particular job yeah but if someone is very good at the core the core element of their job what are some of the other things that might need to be worked around so you know the message i would give to employers but also teachers going back to the educational setting it's not just at work but it's in education is ask the autistic person what they need it's a very simple thing you know because it's going to be different for each person some autistic people might find the lights are too bright so you know they can't get on with their job or their work because you know fluorescent lighting is aversive to them.

55:14Some autistic people might say, can I sit at the same desk every day because they need predictability and routine? And if you're in an open plan office, maybe there's too much kind of background chatter. You know, the autistic person might say, can I wear headphones and, you know, noise cancelling headphones whilst I'm doing my programming or whatever. So because a lot of autistic people have sensory issues and even sort of are very easily distracted and they just want to be able to focus. So a lot of these adjustments or accommodations are not expensive. It's just about taking the time to ask the person, what do you need?

55:53And companies or educational settings should be able to provide it. I'm very pleased that in my university in Cambridge, we now have 900 autistic students. So that's a big change from the old days. It means that autistic students are applying to a top university they're getting in, and there's a disability resource centre in the university who meets the student even before they start just to say, what do you need? And that was a kind of a pathway that we put in place. Because if you make things a bit more of a level playing field, autistic people should be able to achieve just as much as a non-autistic person or better.

56:36You know, it's funny that you say that because I watched this documentary about, and I want to touch on the savant because that's, you know, a kind of a hack trope, shall we just say, when people think of Rayman and whatever else. But touching on what you said, I watched this documentary on a very talented mathematician. He was a young boy. He was 15. And, you know, the professor came around. I think it was from Cambridge, actually. I can't remember which college. And his dad went, look, to the professor, I've got no doubt that the lad can do the work. That'll be fine. He goes, I'm just worried that he'll be able to cope at university being autistic.

57:13And the professor smiled and went, we're all autistic. You know, but there is, like you've touched on before, you know, there is that kind of, you know, when you go to the mathematics department in Christ College, Cambridge, for instance, I'm sure it's going to be having higher than your average percentage of autistic people there. Yeah. You know, going back to one of the studies I mentioned earlier, when we measure autistic traits amongst mathematicians, they do score higher than non-mathematicians. So that's kind of evidence both that there's some sort of connection between mathematical ability, maths is another system, and autistic traits.

57:52but also means that you know if you go to work in a maths department you know people don't think uh you're unusual if you're also autistic um you know if you if you're not comfortable with eye contact or chit chat you know but you you're happy just being left to your own devices solving maths problems um you know you're valued basically and so it comes back to this idea that if somebody can end up in an environment in which they feel they belong. It's good for their mental health. It's good for their sense of inclusion. It's almost like their disability reduces and the person can just shine. Absolutely.

58:36But let's talk about the savant idea because we've all seen the movie Rain Man and that tends to be our image of people who see savant level power. So let's talk about what does that mean, how common is it yeah etc yeah so savant um you know savant syndrome sometimes it's called you know it's people who've got an unusual talent um that is out of keeping with the rest of their abilities um so i've met and it's more common in autistic people than in the general population or even amongst other disabilities so i've met autistic people who um who can just hear any song and they can play it on the piano straight away.

59:20So it's just kind of taking auditory information and turning it into motor skills. And they can just see the patterns. You know, that'd be one example. There's a young man called Derek Parabaccini who is autistic. He's got a learning disability as well. He doesn't live independently, but he can listen to any jazz song and play it instantly. But if you then say, can you transpose that song into a different key he can do that instantly so he's taking the patterns he's obviously able to kind of recognize the algorithms if you like and and do that transformation um or if you could say can you play that song in the style of you know he can do that instantly but you know he wouldn't be able to go to the supermarket and you know be able to you know figure out if he's got the right change or not you know there's another autistic young man called Max Park, who is minimally verbal.

1:00:23He is the world champion for the Rubik's Cube. So the Rubik's Cube is all about patterns, but these are visual patterns, unlike Derek where it was auditory patterns. But he can solve the three by three Rubik's Cube faster than anyone, but also the four by four, the five by five. There doesn't seem to be any limit to his ability to compute what do i need to do to solve the problem but you know he's not living independently he's still very dependent on his parents he's now an adult still the world champion no one's beating him you know so it's all about how do we support individuals like that

1:01:04Francis Foster:you know and and channel those skills and i mean look being the rubik world champion is great thing but also is there perhaps a more monetizable version of that skill that you know i'm sure there's other patterns that that person can recognize right that's how you convert that uniqueness into a job or into employer yeah yeah i know what you mean by monetizing it i think you meant it in the positive of course of how can you help the person make a living and making a living and an impact yeah i mean i suppose some autistic people might worry are our sort of strengths going to be monetized in the sense of are we going to be exploited so it's just you know um uh yeah i mean i i take it in the first sense you know if you monetize someone's skill you pay them for that skill being used or they get the benefits of that right because you can't really have one without the other in the sense of you can't say well autistic people are discriminated against unemployment and then also recoil at the idea of monetizing the skill because that's what employment is yeah right is that fair yeah yeah well i mean i guess the word monetize just has these different connotations.

1:02:15But I completely agree with you.

1:02:18Francis Foster:Did you know that the biggest threat to your retirement is not something that's talked about often? The increased longevity of American citizens means default retirement accounts like IRAs, 401ks and TSPs may not suffice. If you have over$50 ,000 in your retirement account, get instant access to a free two-minute report from Augusta Precious Metals that reveals the one step you can take to secure your financial future. Visit TriggerGold.com or text Trigger to 35052 today. You've mentioned Elon Musk a few times. And I sort of wonder, because he came out on television as autistic a few years ago, which I thought was a very positive thing because, you know, we need more role models of highly successful people who are autistic.

1:03:08But actually, when you look at Elon Musk from a distance, I don't know him personally, does he have a disability? Should we really be using that word autism if he doesn't have any recognizable disability? He seems to be coping absolutely fine in the world. He's monetized his skills in engineering, putting rockets on mars and you know tesla cars so you know but obviously he identifies as having a lot of autistic traits so i sort of see that this is good for raising awareness you know um but i would still reserve the diagnosis for someone who needs extra support you know well we don't

1:03:54Francis Foster:know what he needs and we don't know the struggles i mean i've heard him talk about like you do not want to live in my head as well and right so uh i we don't know him personally yeah um but yeah um i think there was one other question as we're heading towards the end that i wanted to slight sidestep but and don't don't feel like you're under any obligation to talk about it in detail but one of the ways you conceptualize uh autism is is the extreme male mind is that accurate yeah um can you can you before i ask you the question i really want to ask you can you explain that a little bit? Yeah, I mean, it relates to what we've been talking about throughout the conversation.

1:04:31Because when you look at skills like systemizing or pattern recognition, in the general population, you find gender differences, that males on average, are more interested in patterns and systems, taking things apart, putting them back together again. And girls and women, on average have better social skills and communication skills, better empathy, just much more comfortable in the world of social groups and keeping track of who knows what and how everyone's feeling. So, you know, if you then look at autistic people, they seem to be an extreme of the typical male profile because they've taken the pattern recognition and systemizing to an extreme.

1:05:19They haven't done it consciously. That's just how they work. And they struggle with some of the things that are kind of easier for females in the population. So it's in that sense that I sometimes talk about autism as an extreme of the typical male pattern of development. And that's also why we started looking at these hormones that are sex-linked, like testosterone and estrogen to understand the biology of these gender differences but also

1:05:48Francis Foster:of autism and in fact i've heard you talk about a study which kind of indicates that much of this gender difference is visible in newborn babies you know the male baby reaching for mechanical toys the female baby reaching for humanoid shapes and even with monkeys is that right monkey female monkeys yeah monkeys are different in that respect yeah i mean i don't We haven't done the monkey work, but we have done work with newborn babies. And it's not so much what do they reach for because they can't really control their movements when they're at birth, but they can control their eye movements. So we present newborn babies with a human face or a mechanical object and just look at which one do they look at.

1:06:33and what we find is that boys at birth spend more time looking at the mechanical object and girls spend more time looking at the human face yeah so um it's not to sort of diminish the role of social experience later and culture and socialization but it looks like some of these gender differences might be present at birth and therefore partly biological so putting those two

1:07:01Francis Foster:things together here's the real reason i'm bringing this up as i'm sure you'll be aware yeah um gender dysphoria and transgender issues have become quite prevalent as a talking point in the culture something we've we've talked to lots of people in favor again you know all sorts of different sides on it on the show yeah and when you talk about their effectively being on average not in every individual but on average a male way of thinking and a female way of thinking or male brain and female brain. And particularly when it comes, we know that autistic girls are much more likely than the average girl to have a diagnosis of gender dysphoria.

1:07:41Francis Foster:Do you have any thoughts on the male brain and its interaction with gender identity, as we now call it, and gender dysphoria and so on? Yeah. I wasn't aware that girls and women are more likely to have gender dysphoria autistic girls are more likely than an average girl to have gender dysphoria we know that autistic people and girls in particular are very overrepresented in gender issues and that may also be true for autistic males too could be so we did a big study of um 36 ,000 autistic people, it was online, asking them about their gender identity. So, you know, does their current gender identity match the gender that they were assigned at birth?

1:08:31And we found autistic people were disproportionately more likely to say that they're either non-binary, gender non-binary, so they don't feel either male or female, or trans, so that they currently identify as the opposite to the gender that they were assigned at birth. I think it was like six to nine times more likely. So there is something there to do with if you're autistic, you're more likely to have gender, well, I would say divergence, let's call it, not necessarily dysphoria, because we didn't ask, are you unhappy with the gender that you've got? But certainly kind of, you know not falling into just the binary categories and we don't know the reasons for that you know you could imagine both social factors but also biological factors might contribute it needs more work because i mean that is very true because i think one of the things that we kind of assume with autism is that we know everything about it i don't know if simon

1:09:39Francis Foster:I don't know if Simon assumes that. But in a lot of, you know, autism is this, it's this. And the reality is this is an ongoing conversation. This is an ongoing study. You know, neurodiversity is something that I really think is important to accept. And, you know, the fact that people are different, we think in different ways, we see the world in different ways, that is a good thing. Yeah. Yeah. And so I think I guess my question really goes is what do we not know yet about this condition and that you hope with what are the breakthroughs that you hope we make in the next few years? Right. I mean, I would say that autism has only been known about since the 30s or 40s, you know, so, you know, we're sort of, I don't know, 70 or 80 years into autism research.

1:10:30that's a relatively short amount of time in the history of science there's a lot more to still discover and we work at multiple levels when i say we it's the whole community of autism researchers some of it is neuroscience you know so now we've got the tools for brain imaging for example um you know really understanding that diversity in the brain um which we don't have you know a full picture of yet. We talked about the genetics. It's not really a sort of complete picture yet. We're still learning a lot. But I suppose much more relevant is what can we be providing for autistic people? Because it's all very well studying autism, you know, in terms of its causes or its nature.

1:11:17But much more relevant is, you know, are we providing what autistic people need and as an example we're looking at music therapy to see whether that's something that autistic people might benefit from anecdotally a lot of music therapists will say yes this works you know we're doing a trial a randomized control trial to see if that works so i think we just need a lot more kind of evidence about what works and for whom so that we get to a point in the future where a parent's, you know, their child gets diagnosed and we can say, no big deal, there's all these different options available, all with evidence behind them, you know, to kind of match it to each individual child.

1:12:02And just touching on the parents, because that's actually a very important point, what should a parent do if they're looking at their child and thinking to themselves, there's something a little bit awry here, they're not developing... Yeah. Could they be autistic? What are the classic signs and how should this person go to get help, essentially, get more support? Yeah. I mean, it depends on the age of the child. So we've developed different screening instruments for toddlers where you'd look for certain behaviours, like whether the child is pointing at things or not, because even before they can talk, it's a communicative gesture.

1:12:42whether they're looking at the face and following where people are looking so they're kind of screening instruments that look at that but there are screening instruments right through childhood and teens and adolescents so um the one that we've developed is called the aq the autism spectrum quotient parents can find it online they could even if they're sort of being told by their doctor by their gp or family physician your child's fine stop worrying they could go online and start filling in one of these checklists and if the child is if the person is scoring high uh they could go back to the doctor and it kind of empowers them to say look at my child's score i want my my child to be given a full assessment but you know again talking about how our society is still not providing what people need the waiting lists to get a diagnosis are shockingly long.

1:13:40You know, we hear around different parts of the UK, but the same across the world, that waiting lists can be not just months, but years long just to get the diagnosis. And then when you get the diagnosis, there may be nothing beyond that, no pathway, no support services. So, you know, that's down to the government. I think in countries that have, you know, socialized social care and health services. But the funding is not sufficient at the moment.

1:14:16Francis Foster:One other question I was going to ask you, just following the logic of a number of the things you said. So you mentioned that it's significantly genetic at the very least. We don't know how much and to what extent and which environmental factors affect it. And then we also know that autism rates as we've acknowledged are rising very rapidly and have risen very rapidly logically if it's mostly genetic and that's happened you would say that's because of better diagnosis is that the only reason that we're now seeing so many more autistic people uh it's one of the reasons better diagnosis and greater awareness so you know podcasts and interviews like this it's kind of hopefully is educated we've made a thousand autistic people in this conversation Well, certainly, you know, there will be people out there who are thinking, could I be autistic or could my son or my brother or whatever?

1:15:09And that's a good thing, you know, because it's kind of raising awareness. Another factor is we've broadened the definition of autism. So to include not just autistic people with learning disability or intellectual disability, which is what it used to be, but also autistic people without learning disability. so that suddenly opens up the diagnosis to anyone in the population um and then there's also obvious things like social media you know that there are autistic people going online and talking about their experiences and you know that that also spreads the word and you know there are more clinics on the ground so we've trained more professionals to be looking for it all of these factors kind of combine to increase the numbers.

1:15:56And I think since the year 2000, there's been a 700 % increase in the numbers of people getting diagnosed. So back then, it was like one in a thousand. Today, it's one in 30. So it's really skyrocketed. But I think that's a good thing, because it probably meant that there were lots of people who were just sort of coping, muddling along without a diagnosis who actually needed it. And if they'd got their diagnosis early enough, it might have prevented the deterioration in their mental health and that sense of isolation we've talked about. Absolutely.

1:16:35Francis Foster:And something I've seen, as I say, with my family. Dr. Simon Baron-Coin, it's such a pleasure having you on. Thank you for being here. Thank you. Before we head over to questions from our supporters, the last question we always ask is, what's the one thing we're not talking about that we really should be? And that could be related to autism or not at all totally yeah your call um well um back in 2017 i was invited to give a a lecture at the united nations on autism awareness day and i thought goodness i've got this opportunity um so i chose as my topic autism and human rights and although it's a bit you know it's now you know um eight years later i still don't think we're talking about that enough the autistic people are they're falling outside of human rights we've talked about the right to employment and the right to education there's also the right to health including mental health the right to leisure and dignity you know all of the different human rights that exist many autistic people are not enjoying, unlike the rest of us.

1:17:46So I think that's something that we could look into more.

1:17:49Francis Foster:Thank you very much. Head on over to triggerpod.co.uk where we ask the good doctor your questions. How do autism traits and diagnosis vary across different ethnic and cultural groups? And is there a cultural and background dimension to autism?

1:18:19We'll see you next time.