No. 1 Autism Professor: How To Spot Autism In High-Masking Adults!

0:00Dr Luke Beardon:Propel Fitness Water with Gatorade electrolytes, zero sugar and vitamins. Propel hydrates better than water to help you get the most out of your workout and get back to your best self. What propels you? Propel with Gatorade electrolytes. Being authentically autistic is an avenue towards being made to feel lesser. And that's because of a lifetime of being made to feel that it is your fault that you are in the wrong. you're in the wrong for buying your nails, you're in the wrong for stimming, you're in the wrong for saying something that people say, oh that's too direct. What do you think is the biggest misconception around what autism in adults actually looks like?

0:37The misconception is that it looks like anything at all. You can't look at somebody and tell them that they're autistic, otherwise we would all know who the autistic people are. At what point should someone stop thinking, maybe I'm just anxious or maybe I'm just an introvert and seriously consider that autism could explain their experience? That's an amazing question. Can I have just a second of your time? If this podcast has helped you understand your brain or made you feel less alone, can you do me one favour? Can you hit the follow button? And I'll repay the favour by continuing to book the best and most exclusive conversations on this topic.

1:11Please enjoy the episode and always remember, you're not broken, just different, and you have always been enough. Luke, welcome. Thank you very much. Throughout today's conversation, I want everyone watching and listening to keep a mental checklist of the signs that we're going to be discussing, because at the end of this conversation, I'm going to ask one question which will change how everyone will understand themselves. But before we get into all of that, can you explain who you are and why you have dedicated your life to expanding the conversation around autism? So my name is Dr. Luke Bearden.

1:47I'm a senior lecturer in autism at Sheffield Hallam University and I've been there for 25 years. I know that because I had a celebratory lunch the other day so that was nice. That's the only reason I know I've been there for 25 years. My interest in autism stemmed from when I was a volunteer aged 14 at a special school part of Addenbrooke's Hospital and I used to go and volunteer to look after little autistic children and absolutely fell in love with my time there. I just found these autistic kids fascinating and I found I resonated with where they were coming from. And I never looked back. I went to university, ended up as a grade one support worker in adult residential working with autistic adults.

2:29And yeah, that was the story really. I've done quite a number of different jobs, culminating in being a senior lecturer. And the idea of autism not being in my life in terms of something to think about is absolutely abhorrent. You explained that brilliantly and far better than I could have done. And that's really amazingly summarized why I was so excited to chat to you on the podcast today. I think we should dive straight in. And I think one of the biggest questions that many people watching or listening will be asking themselves is how is it possible for autistic adults to go much of their life decades often and and be missed and and it not to be noticed great question to start off with how long have we got i it's one of those questions that i don't think there's a simple answer that i think there's a number of components that have um essentially amalgamated to create this almost imperfect storm for possibly a generation maybe two generations of current adults to have been if you like in inverted commas missed so on the one hand you've got history um so autism is relatively new it's not new by the way autism has always been around but in terms of being part of the diagnostic criteria and people researching it and clinicians understanding it and those sorts of things historically it only stemmed from the sort of 40s onwards and then there was a big leap in terms of the 80s and 90s so there's it's fairly embryonic and also history will show that people's understanding of autism has developed as the decades have gone on so even in those early days of autism people would not have understood autism in the same way that we do today so even if you were a young child in those days you might not have been picked up so then you've got the educational system and knowledge around within education and knowledge today in education around autism is far better than it was 30 40 years ago so those teaching staff may not have had the knowledge to recognize those individuals in front of them and then as an adult you've got maybe the more if you like political issues like waiting lists which makes it actually quite difficult for some individuals to go forward for that identification process anyway I like things in sets of three so those three those are the three key things I think why lots of individuals go through life without being overtly recognized that's not the same to say as they don't recognize themselves and i think there's probably two groups of individuals who are autistic adults without a formal identification one group who are quite happy to self-identify and are absolutely convinced usually rightly so that they are autistic and then what i refer to as the oblivious auti the autistic adult who um who is equally as autistic but don't actually know that they are and it's a stream running throughout all of my kind of thinking about autism is that you don't know what you don't know.

5:18And I find it fascinating with so many individuals who end up getting that identification and that huge revelation. People say, well, why is it such a revelation? You're the same person you've always been. It's like, well, no, I didn't realize that I was like this. I didn't realize that other people weren't like that. And I find those pathways to identification absolutely fascinating. Gosh, that's incredibly interesting, Luke. And I've no doubt that in your career, you have heard the phrase masking and many autistic adults might be listening to this and thinking do i mask am i high masking is that why it hasn't been picked up what do you think high masking looks like in the in the autism conversation so i think we need to be really careful when we talk about masking well i think we need to be careful when we talk about language because I think that if language is to denote your own life experience, but your life experience is qualitatively different to somebody else's who is using the same language, you end up talking at cross purposes.

6:22And masking is a really good example. I always refer to Wittgenstein's lion because Wittgenstein put it so much better than I did. So Wittgenstein would say that if there was a lion here today as part of this podcast chatting to us in English, we still wouldn't be able to understand each other because the lion's life experience is so completely different that even though the language is the same the meaning behind that language is so qualitatively different and i think there's something to be said about autistic language and autistic experiences including for example masking so an autistic person might say oh well i'm masking and when i if i'm doing some teaching or whatever and so many people say yeah but we all mask a little bit so what's the difference and i like your question about high masking and i think I sometimes go back with three questions and say, well, okay, when you're masking in your parlance and your use of the terminology, are you consciously aware that you're doing it all of the time?

7:10Does it take an enormous amount of effort? And are you wrecked as a direct result? Are you exhausted? Has your energy been depleted as a direct result of that? And most people say no, no, and no. And I say, look, it's not always the case for the autistic person to say yes, yes, and yes, but it very commonly is. So I think that experience of masking is qualitatively quite different for the autistic adult compared to what I refer to as the predominant neurotype. And I'm really interested by this idea of energy and the amount of energy that gets put in and used up by this constant having to be somebody else.

7:42It's called echopraxic behavior, copying behavior, learned behavior that is not authentic. That's essentially what high masking is. And then the duration and the frequency and the intensity of that also comes into play. So you might be like, I need to intensely mask in such and such a situation where I feel very uncomfortable to be authentically myself. But when I go home to my husband, I can be more authentically myself and I mask an awful lot less. But when would an autistic person, let's say a child, you say they observe human behavior and then I guess they learn what behavior is accepted, what jokes get laughed at, what comments get rejected and criticized.

8:20how early in someone's life would that observing and copying start i think it's not even or it's not only just a case of that observation we overtly teach children to conform in some ways particularly in schools and educational facilities sometimes we do that as parents it's like this is the expected way of being as a child and if you fall outside of that demographic norm you're often encouraged to conform to behave more like the other kids um so even from a very early age so i went to a primary school over christmas and i just shuddered because on the wall there was one of those reward charts and it was a one of them was um you know good sitting so sitting still for example now i know we're here to talk about autism but your adhd listeners will be said won't be sitting there necessarily but the idea of having to sit still for long periods of time is just inauthentic.

9:17So what you're actually saying to those four or five, six-year-olds is you're not good enough being your own authentic self. We need you to change and conform, i.e. mask, in order to suit everybody else. So I think there's this pernicious, ongoing narrative that most people don't realise how harmful it actually is, but it's unbelievably neuronormative at heart, as in your brain isn't working in the way that we want it to work, so you're the one who needs to change. You're the one that needs to conform. So we're almost forcing that masking in quite an overt way, right from a very young age. Yeah, gosh, why can't neurotypicals meet us in the middle a bit more, rather than assuming that the neurodivergent children have to shift so far away from their true selves?

10:04And we know that masking over time has really heartbreaking consequences in terms of a energy, how much effort you're having to put into pretending and copying and putting on this character called normal. But also it's an identity crisis, I guess. You can go through years pretending, being a chameleon, and ultimately you can really lose touch of who you really are. And I really want to touch on that a little later on and how people can bridge that gap between the masked version and who they actually are and begin to heal. but what do you think firstly is the biggest misconception around what autism in adults actually looks like um well i think the misconception is in the question that you've asked is that it looks like anything at all you can't look at somebody and tell them that they're autistic otherwise we would all know who the autistic people are it'd be as simple as that and we probably wouldn't be sat here today.

11:02So, I mean, it sounds like a very trite thing to do, but when you overhear that sort of, I would regard inane comment, oh, so-and-so doesn't look autistic, if you follow that up and say, well, what does autism actually look like? Maybe I can give you the answer, which just demonstrates what a somewhat ridiculous thing it is to accuse somebody of, of either looking autistic or not looking autistic. And I think that is fundamentally an incredible misconception that you can actually look autistic and that there's a way of presenting that all autistic people present in that way. It's such an anomaly because it's so illogical.

11:37I fail to understand how anybody can ever really think about autism in that way. And yeah, it's a prolific myth. And I am getting more and more obsessed with this concept that I came up with around autistic epistemology, which is what is autism knowledge? Where does autism knowledge come from? How accurate is autism knowledge? and then how potentially damaging is that misinformation when applied to the autistic population and the idea that you can't be autistic because you don't look a certain way is a classic example of where autistic epistemology has failed to meet the threshold of validity so that idea that you can look autistic and then it's then applied to the autistic person and i know so many adults often who are masking who get literally accused of making up the fact that they are autistic because they don't, in inverted commas, look autistic.

12:28And that's hugely damaging around your own sense of self and your own authenticity. If we know that masking starts young, what would an experience of an autistic child be that would make them think, I need to hide who I am? I think there are some autistic individuals who don't appear to be bothered in the slightest, who do behave in more authentic ways. and they are often rejected subsequently from mainstream environments because in inverted commas they don't fit in so they're rejected straight away just for being themselves which has its pros and cons one would argue on an individual by individual basis then you've got individuals who and i'm absolutely convinced this isn't researched but i'm still i maintain i'm convinced by this that there's a significant percentage of the autistic population who hate being in the spotlight absolutely hate it and will almost do anything to fly under the radar so it's not that one is deliberately copying it's one has learned to copy in order not to be in the spotlight which then develops those habitual masking um types of behaviors and it's an escape mechanism it's it's that combination of um autistic safety authenticity and energy and i think that the combination of those three things has to be taken into account so you've got an autistic person who wants to feel safe and as a direct result of wanting to feel safe they're not allowed to be authentic and so they've got to use up an almost enormous amount of energy by masking but for them in that situation it's the only way forward because it's the only way to feel safe now what would be amazing would be they were allowed to feel safe by being authentic but that currently is often not the case what's the difference between an autistic person who does have that insight into their differences and therefore masks to hide their differences and somebody that you said perhaps doesn't feel the need to mask um i think it's all about both insight into self and insight into other people and society and expectations and all of those sorts of things um going back to this idea of the oblivious orty it can be quite nice not realizing that other people are thinking you're a bit odd yes and i've certainly heard other people going oh well i kind of wish i hadn't known that now because now i now i'm more conscious of the fact that actually most people don't do things like that i'm i'm obsessed with this concept of understanding of self and going back to what i was saying earlier how do you know what you don't know so how do you know what other people are experiencing or thinking or feeling um until maybe such a time that you realize that maybe you are different and then you explore it in greater detail and there's pros and cons of that so i'm absolutely convinced that the better understanding you've got of self the better uh able you are to make choices that are appropriate to you which then leads to increased chances of well-being and decreased risk of trauma for example um and i think that only knowing that you're autistic and understanding what that means specifically to you are you able to go that down that decision making process that's applicable to you and not and not applicable to the rest of the world um but to get to that point you have to understand that your way or the way in which your brain works might differ to the majority of other people.

15:38And that can be an absolute revelation, literally an overnight revelation for some people who then are like, well, how come I haven't realized this for the previous 40 years and actually feel a bit like, oh dear, that's a bit strange. How come I didn't know? It's because you don't know. It's like being colorblind. How do you know that other people see things in different colors compared to you until it comes up in the conversation or whatever? Or you've got individuals who are like, I've always felt slightly different, but I've never had that kind of label to pinpoint now that i understand that everything suddenly makes an enormous amount of sense yes so so so interesting i mean so if we i guess now we can have an understanding of why somebody might mask but if someone is really really good at it like what are we talking about in terms of what we might be looking for in terms of spotting somebody or somebody recognizing in themselves that they might be masking what do you think are the biggest signs of somebody masking autism?

16:32Almost by definition, if somebody's really, really good at masking, it is impossible to spot. In the sort of day-to-day, so say we were sitting here and one of us was highly masking and to a really effective degree, within this hour or so, you wouldn't be able to pick up on that. So I think it's all the stuff that goes on behind the scenes, particularly levels of anxiety, levels of feeling safe, going back to the concept of doing things in sets of threes, and then the amount of energy that the individual is putting into doing that. And you only know that outside of the masking situation, which is why so many people will say, well, I'll mask on, mask on, mask, and then I just have to go home and then lie in a darkened room for that recovery period, which is because they've taken up so much energy and as a direct result of having to suppress their anxiety as well, that when you're offered that safe, authentic space to be yourself, that's when you actually need that.

17:22So if you know somebody who appears to need recovery time, if you like, as a result of being out in the real, in inverted commas, the real world, what people refer to as the real world. Everybody lives in the real world as far as I'm concerned. But anyway, going into mainstream society and you need that recovery time afterwards, along with ongoing high levels of anxiety and lower levels of energy, that combination, I think, are the sort of three flags that could be raised to go, hang on a minute, is this person masking and using up an enormous amount of energy for doing so? What about rehearsing conversations?

17:53Is that like preparing the mask before you go into an event? So it's slightly different from masking. I think it's a protective thing, again, around reduction of potential anxiety. Being anxious is a horrible, horrible, horrible situation to be in. Autistic people aren't stupid. They don't want to be in situations that are going to cause them anxiety. And if you don't understand the language of the predominant neurotype, because you have your own understanding of language and it differs even if it only differs five to ten percent i'm just making those statistics up but even if it if it differs even slightly that means that you're always in a position where you can be found out to have said something that other people think is stupid or a remark that people say well that's that you shouldn't have said that or that's not the appropriate time or what do you mean by that or whatever so um rehearsing conversations to double check that what you say is not going to be picked up on which will make you more anxious and put you in the spotlight is a perfectly logical thing to do takes a huge amount of mental energy but if you are able to do that in order to feel safe it does make a lot of sense what about matching somebody's communication style because you typically at least in this interview speak faster than i would typically speak and i'm finding myself actually kind of speeding up how i would speak in order to match and create a an equal middle ground between how we're speaking and i've just realized that that's kind of an autopilot thing that i'm doing is matching someone's communication style their tone of voice their accent is that a form of masking uh it goes back to what i was talking earlier about that term echopraxia which is kind of like copying behavior um some autistic people do that absolutely inadvertently and get accused almost of taking the mickey out of people saying why you suddenly turned into an american just because i'm american and is that kind of like a and often autistic people say i'm not even aware that i'm doing it um other people i think again it's a safety thing the more you gel with the sort of culture of the person you're with the less likely that you stand out i'm now really conscious of the fact that i'm talking quickly no no it's brilliant i just found myself speeding i spoke at a conference not so long ago um and i was i'd had too much coffee and i was really going for it and it was fascinating because um somebody uh stood up afterwards and said my adh d brain just loved it she's your first person's ever spoken at the right speed for me.

20:12Otherwise, everyone's just way too slow. So I hope I'm not alienating any of your audience. No, it's brilliant. I do it all the time. I got into a taxi yesterday, and I've been accused in the past of being quite posh. And the taxi driver said, where do you want to go, mate? And I kind of dropped my tease a little bit in my response. I said, Brighton train station, please. And I could sense that in response to that, he replied to me in a slightly more posh tone than what his normal might be. And I was super aware that we were kind of merging and meeting each other in the middle. And for me, that's always been something I'm super aware of.

20:44And it's very uncomfortable when I have different friendship groups who perhaps speak very differently, have very different interest bases, and I'm kind of having to please everyone simultaneously. And sometimes that gets comments from a friend saying, you don't really like that. Why did you say you're interested in football? Or why are you speaking like that? That's not how you normally speak. Can that cause confusions and complications in people's life if they're copying people too much yeah i don't know whether it's fair to say they're copying too much because presumably they've got very good reasons for doing that and sometimes it is that conformity to fit in and not be in the spotlight but also fit in because you want a social circle and you want to be accepted within that social circle um and it goes back to that idea of balance i love the idea of balance because good balance in terms of what you put in, you get something back.

21:35It's quite difficult to find, I think, if you're from neurological variants, if you're neurodivergent, because the world is against you. That sounds like a ridiculous click-baity thing to say. I don't mean the world is against you, but because you're in the minority, you are by definition in the minority. So the majority of people do things in certain ways and you do things in a different way. So you're always up against it to a certain degree just by being in that minority group. So if you take an example, but I'm just trying to think of a ridiculous example. So say at the age of three, you discover that you only feel really super authentically safe when you're wearing an orange bowler hat.

22:15Okay? I have literally just made that up. So if anybody is out there who loves orange bowler hat, good for you, but I don't know of anybody myself. And you put on your orange bowler hat, and all of a sudden, people are looking at you, staring and making comments. All of a sudden, you're like, I don't feel safe anymore. um what do i do like literally what do i do do i go home and hide in my room and just stare in the mirror at myself in my orange bowler hat and feel super happy but not engage with the rest of the world and feel unfulfilled or do i just keep going out in my orange bowler hat i nearly forgot what my example was and so keep on going out where and then feeling to be a bit silly or other people looking down on me or making comments and put up with it which takes a lot of my energy as well or Or do I conform and just not wear a bowler hat and then not feel authentic?

23:01Those are often the only three options available to the autistic individual. How amazing would it be if everybody else started wearing orange bowler hats? Or it's perfectly okay to wear an orange bowler hat and nobody blank an eyelid because it's not doing anybody any harm whatsoever. And that's obviously an alternative solution, which is why I always talk about autism plus environment equals outcome. It's like my self-professed golden equation. Being autistic means being autistic. It doesn't lead to an outcome. and yet we know there are all sorts of outcomes for autistic people like low employment trauma all of those high levels of anxiety so what is it we need to change we need to change the environment in this case if we change the environment by flooding it with people wearing orange bowler hats so that the bowler hat in wearing individual feels more authentic and at

23:43Dr Luke Beardon:ease and safe then that's the obvious solution propel fitness water with gatorade electrolytes zero sugar and vitamins propel hydrates better than water to help you get the most out of your work out and get back to your best self. What propels you? Propel with Gatorade Electrolytes. As well as like the bowler hat and almost deciding whether to conform or to retreat, can that be the same with communication styles? And I'm thinking of things like small talk. I guess a lot of people fake or force small talk because that is conforming and many people do partake in small talk. Why do many autistic people find small talk so exhausting?

24:24do you know what it's such a good question because i i'm not a big fan of small talk i don't and i remember begging a clinical psychologist um to explain to me what's more why is it that people talk such utter nonsense to one another and you literally sitting there listening to them thinking this makes no logical sense to me whatsoever like they'll say oh did you see the football last night and the other person goes yes and then they start talking about it's like you literally just agreed you've seen the same thing that should be the end of the conversation not the beginning that's not information sharing you're just or whatever you talk about all sorts of things where and she explained it to me it's a kind of anthropological stroke sociological thing about um feeling connected with with other humans if that doesn't make you feel connected actually it's it has the opposite makes you feel disconnected why would you want to engage in it and it is honestly it's a minefield because you can go in with a conversation and uh provide what you think is a totally apt appropriate uh interesting comment or question and all of a sudden you're the one who's been ostracized for saying something that the rest of the group doesn't think is appropriate or you respond to something that actually they were talking about three weeks ago and you've just come up with a perfect response or whatever it might be so small talk genuinely can be absolutely terrifying um and i that's why i talk about autistic social skills people say oh autistic people lack social skills absolute rubbish is going oh yeah but autistic people are not very good at for example engaging in small talk that's predominant neurotype social skills so what you're saying is the autistic person is not very good at not being autistic well we know that show me a non-autistic person who's good at being autistic they don't exist either so um people who are listening might be like oh well yeah people autistic people lack social skills what about the rest of those individuals how many non-autistic people have got good autistic social skills for example just not talking um in that small talk as a um you know in terms of going oh well i know i'm with an autistic person, their social skills dictates that we talk about in my example, either autism or triathlons or the smell of my animals.

26:27And those are the three things that I like to talk about. Have you talked to me about anything else? Not interested, thank you. It's weird because you say, and it makes total sense from what the psychologist told you, that small talk is kind of an evolutionary affair to lubricate a social introduction, to transition between not knowing each other and knowing each other. How are you? How's the weather? a did you watch the football game but as a as an opportunity and a mechanism to bridge you together before you get into the meat of the conversation but for me it does the opposite because it always comes across as insincere and forced and because it is a conversation or part of the conversation that is kind of just an artificial mechanism to bridge into the meat it just feels like you're not or they're not being authentic so for me it's doing the opposite you're starting the conversation on the back foot or from a place of suspicion and lack of trust because you know at the beginning the most important bit when judgments are being made you're not being genuine or neither are they and that goes back to what i was saying about victor and stein's lion presumably their engagement is absolutely authentic and they're loving it maybe i guess i don't know you'd have to ask them as i say i find it somewhat illogical but anyway um and so where's the give and take i have lovely example i was with a group of individuals and we used to have set meetings and used to frustrate me so much there was agenda like a formal meeting with a set agenda and it starts at say midday and people were engaging in like oh how are your kids or whatever and you say look i'm sorry but this isn't on the agenda is it they're like oh no we're just chatting it's like well it doesn't say just chatting on the agenda at 12 o 'clock yeah um so the the compromise if you like was they would then meet up 15 minutes before the meeting and then I would just chip in at 12 so they could talk about whatever they wanted to talk about in that social sense before then we would start at 12 and if they wanted to carry on afterwards then they could now I think that kind of that gorgeous juxtaposition of differing communication styles that can go hand in hand with a little bit of good give or take from both parties is absolutely the way forward I think what you're experiencing and most people who are neurodivergent experience is that lack of courtesy to bring their own neurology into account.

28:47And it's almost like this one size fits all. That is the way we do it. And you just either have to join in or be ostracized, which I think is awful. Yes. It makes you quite anxious, actually. When I read an email, and typically an email will start with, hi, Alex, or hi, Luke. Hope you're well. How are you? Did you have a nice weekend? And you just know it's just forced. and do I have to answer that? Can I just get into the point? And often I do because you feel like rude and you overthink how you might be perceived if you ignore the email equivalent of small talk, which is how are you? You have a good weekend.

29:22And so you have to do it. You have to do the dance. And I think like for me anyway, I make the assumption that these things come from a place of kindness and I'm fairly convinced they do. But the example you just gave, I'm on edge now because if somebody knows particularly if they know me well at work and they'll say oh how are you i'll immediately be like well i thought i was okay until you've just asked that question because do you know something that i don't and that fear of oh have i messed up again and you know that but i don't that's why you're asking the question it's just an immediate response of years of me getting things wrong and desperate never to be in the wrong again Yeah, gosh, so fascinating and 100 % relatable.

30:08And now I'm worried about that. How are you, Alex, at the start of the email that I didn't reply to, how that's going to come across. Look, everything we've spoken about before is, I suppose, what people can see. But I think a lot of masking can sometimes be invisible, like it's happening inside the body, inside the nervous system. And I'm particularly thinking about sensory overstimulation and overwhelm. what can that look like or feel like from the inside to the person experiencing it so um my understanding in terms of the neurology of sensory processing is that there's a what's called the filtering process in your brain that filters out of sensory stimuli um to the five primary senses in your vestibular sensory system interoception and proprioception that's probably a conversation from another day i could go on forever about sensory side of things but um in most people's brains, that filter process is operational 24-7.

31:08So it's even operational when you're asleep, which is why you wake up when your alarm goes off, for example, because your ears are still working. But your brain filters out essentially extraneous information. So there's an enormous amount, for example, of noise going on in this room, not least the noise of the cameras and the projectors and so on and so forth. I mean, it might be that most people are just filtering that out so it's not that your ears aren't picking up on the noise you can't stop your ears from working um it's that filter the neurophysiological process and the function of the brain that acts as that kind of filter what seems to happen so far as i can tell in the autistic brain is either um that filter process becomes permeable and a huge amount of uh information goes straight into the conscious part of the brain and actually in the non-autistic brain the majority of information stays in the subconscious part of the brain it isn't it's filtered out that that's why um sensory torture is a real thing in terms of deliberately overloading the brain by high levels of stimulus and people people human brains just can't cope with it and i think that's what's similar what's going on in the autistic brain when it's sensory overload that the filter process is being permeable and huge amounts of information through all of your senses hitting the conscious part of your brain at any one time and your brain can't cope with it literally can't cope so it just shuts down um and i think that's an example of sensory overload the opposite sometimes happens when we talk about being monotropic um which is i don't think only specific to autistic people i think adhd individuals um will often describe being monotropic as well monotropism or monotropism i never know but anyway um so it's an autistic-led theory um trying to explain autism um about um uh flow states and being tunnel so in a sensory perspective it might be that your brain cuts off sensory stimuli apart from one so you get a huge amount of visual information while being deaf for example and you're not actually deaf your your brain is just not processing auditory that's why so many autistic kids their parents think that they're deaf and you ask them why did you think your child was oh well you know we were shouting the name and they literally didn't even flinch that's a good question to ask but the follow-up question i think is more illuminating like what was your kid doing at the time often the parent go oh well they were rubbing their face against the cat or they were staring at the bubble tube or whatever it might be it's like ah i think that's an example of monotropism and actually if you're in that flow state and totally engaged it's very difficult to get out of it um so when you're interrupted it can be quite distressing distressing um to be able to switch attention from one thing to another which again is a very adhd thing so i think monotropism for some of your listeners might be really interesting um thing to investigate if they're not aware of already yes yeah i mean the sort of mid hyper focus interruption rage uh is is very common and a reported sort of uh behavior if you're sort of super interested in whatever your monotropic focus is and you get a tap on the shoulder or something interrupts it it can be it can be very annoying because you finally found something that is giving you that dopamine that can be quite hard to find and then someone's pulling you out of it with the sensory overload and just focusing in on what that feels like is how painful can that be as an internal experience um there's a lift outside the studio for example it's got a big six foot metal door and it gets pushed along the track and it slams against the metal door and it's like a big clash combined with what i would describe it as like someone pulling seven knives and forks against a cutlery plate it's the most excruciating noise ever.

34:41And for me, every time it happens, we put a lot of soundproofing in now to make sure that it doesn't happen whilst we record the interview. But when I go to the loo or when I'm sitting in the corridor, I can hear it. And it literally fills me with an overwhelming feeling of I cannot think about anything else other than just how frustrating this noise is. Is that an example of overstimulation or is that just the response to an annoying noise? I think you've answered your own question brilliantly um I think a lot of it goes back to I don't want to bleat on about it I do actually because otherwise I wouldn't be but I'm going back to that balance I suspect if you have a really really good night's sleep and you're full of energy and you're not anxious your ability to regulate that particular noise would be far superior to when you're you haven't slept very well you're particularly anxious about something else um etc um so the noise itself is exactly the same your ability to regulate and process that information will differ depending on your other sets of energies which is why i'm so keen on understanding the balance of energies because i don't think we take it into account nearly enough so you were mentioning earlier about social chitchat for example social energy is huge so we know i don't i was gonna say i don't look at anybody in particular you're the only person in room but you're amazing so before i say that you are amazing but there are some people who are mood hoovers it's like from a social perspective it's like oh my god they literally just drain the living social life out of me by being in a room whereas then you might have a situation where me for example just talking about my own experience chatting to somebody like you and getting an absolute buzz of maybe intellectual stimulus um social stimulus communicative in stimulus and mental and to a certain degree emotional so you're actually adding to those coffers of my energy rather than draining so that somebody else might drain in those similar ways so if we can chart where those energies are coming from and where they're being taken away it allows us to be more preventative to be in a situation where otherwise it's like no that's sensory overload it's like i can armor myself against it by only exposing myself to that sensory environment when i know i've got enough spoons or energy to cope with it and if that energy gets too much there's there's lots of big horrible metal lift doors slamming and big bright lights and too much background noise can people regulate themselves in those environments by stimming so stimming's an example of regulation it doesn't take the stimulation away but it allows you to divert a certain amount of energy literally in the here and now in order to be able to cope i'm not a big fan of coping mechanisms because it's like when you go to school and say and somebody says oh she's coping really well which she's got dozens of coping mechanisms i think well you're getting it wrong then if you weren't getting it wrong she wouldn't have to be coping would she um but they can be invaluable if you're in an environment where you need some other kind of regulatory balance in order to put up with what you're engaging with on a day-to-day basis and stimming is one of them and it's not always negative people can stim when they're super happy or super excited or just stim because it's a brilliant thing to do um i once put on when i was on twitter uh i put forward the idea that stim dancing ought to be at the next olympics as an event and i still maintain that would be brilliant and people put and sent me some amazing videos of stim dancing um so it can be a joyous fantastic thing as well but it comes back to that regulatory balance of how you in this case movement and particular vestibular movement in order to counterbalance your example auditory processing so it's where one typology of what we call modality in your example auditory might be balanced in a negative way might be balanced out in a positive way by vestibular movement um so that balances it out and it helps you regulate?

38:43I've always bit my fingernails in the past. I've always tapped my hands on my legs. And in the past, people have said, Alex, stop fidgeting. And it's suppressing stimming, which I do now subconsciously, probably as a result of being told off for doing it. Is suppressing stimming a form of masking? It's a form of masking, but I also think it's an indication of where people have got it wrong. Again, coming from a place of kindness. So if I'm... I was going to say if I'm your parent, that would be weird. But say, well, whoever, whoever's told you to stop biting, biting your nails or biting yourself or whatever, or even just stimming.

39:23If I think that's because you're an anxious human being, I believe, wrongly, but I genuinely believe that getting you to stop doing that means I take away your anxiety. That's why I'm asking you to stop. However, I'm not getting rid of your anxiety. i'm just getting rid of your own way of regulating your anxiety or and or i'm stopping your community of ability to tell me that you're anxious in the first place so um to get rid of it's not getting rid of the cause of why you're doing it in the first place um you're only getting rid of the symptom which doesn't make any sense to me whatsoever because one of the one of the most frustrating phrases in the world of language is when somebody say they did that for no reason because it's oxymoronic.

40:08It cannot be true. Everything happens for a reason. If there was no reason, it would not happen. End of story. What people actually mean is, I don't understand what the reason is, which is a very different suggestion or question to put forward. It's like, okay, let's work out why an individual is behaving in that way and then work out whether we need to do anything about it. Now, if you're biting your nails because you're anxious, surely the way forward is to stop you being anxious, not to stop you biting your nails. So sorry to interrupt your hyperfocus, but I promise it's worth it. Our sponsor is Timo, the best organizational tool for neurodivergent people.

40:42Timo wasn't named iPhone App of the Year in 2025 by Apple for no reason. It's the ultimate planning partner gently helping you turn the chaos in your head into a day that actually feels doable, a day you might even look forward to. Timo is designed by neurodivergent brains for neurodivergent brains. And you can tell, it supports the stuff ADHD brains can find hardest. Managing time, planning what needs doing, prioritizing tasks, staying focused, and actually finishing the thing. And the great news is, Timo is now back on Android. The app on Android is still being built up to match the iOS experience with even more features in the works.

41:20So, if you're an Android user and you've been waiting to try it, you can now use Timo's core features too, including your daily plan, multiple to-do lists, and AI prioritization to help you figure out what to focus on first. Timo offers a visual way to plan your day without relying on willpower, memory, or a million sticky notes, helping you break down your daily agenda into something clear, calm, and actually possible. Give it a go and use the link in my bio for 30 % off. Just a note though, the code only works in the web browser, not in the smartphone app. Back to the episode. I'd just like to zoom in on that point a little bit.

41:56I know, and I fully agree, there is no autism looks like this. is incredibly nuanced but as a conversation following on from what you just said do you think there are some conversations there are some behaviors that autistic people might do more and get made to feel shame for from the world and therefore they suppress them other than stimming oh i think just being authentically autistic is an avenue towards being made to feel lesser often. I came up with this new word, a neologism called scrupulosity, based on religious guilt, which is scrupulosity. So just being made inherently to feel guilty for your religious upbringing.

42:42And I know so many, this isn't research, but I've talked to so many autistic adults about this idea of scrupulosity. where if something goes wrong you immediately assume it's your fault um and that's because of a lifetime of being made to feel that it is your fault that you are in the wrong you're in the wrong for biting your nails you're in the wrong for stimming you're in the wrong for saying something that people say oh that's too direct or um people say oh well i've been accused of being too pedantic and i just think you're essentially saying i'm being too linguistically accurate is that what how can that be a bad thing that's extraordinary yes um i i was only yesterday i was reading this pleonasm of in a newspaper article where somebody had to point out that there were three triplets it's like how many triplets do you think they're going to be like that's a and yet you raise that and people are oh that's just pedantic it's like no that's pleonastic ridiculous narrative stop doing it or whatever but being told over and over again that's wrong you shouldn't do it you shouldn't say that you should you shouldn't be bothered about that You should be bothered about that.

43:44That makes you feel inherently guilty. And I think a lot of just being authentically autistic leads into a lifetime then of people feeling like that, which is absolutely tragic. So far, we've spoken about what masking looks like. But the real question is, if someone masks for 10 years, 20 years, 30 years, 40 years, even longer, what can masking ultimately cost someone? Well, I don't want to be too bleak, but it can cost you your life. um i suspect we know that there is a link between um prolonged masking and increased risk of trauma and we know that there's an increased risk between trauma and suicidality and we know that autistic adults are more likely to go down that route compared to the predominant neurotype so it seems sensible to have that note of caution at an extreme end in answer to your question honest answer to your question in terms of what it could cost somebody i'm not saying it would or it will but there is that increased risk i would suggest for most individuals that longer term masking i worry about sense of self that i've mentioned earlier that if you're prolonged being somebody else and i know some autistic people who literally when they walk out the front door they've changed their name nobody knows what their actual name is because as soon as they walked out i'm masking so much i become a different persona and those individuals over decades lose sight of who they were originally because they're constantly put on this act and then they report to me anyway that they end up just completely alienated in terms of any sense of self whatsoever i've even had people say well you you've known me for years can you just tell me who i am again what's my personality because i don't know because i've had to be somebody else for so long is and and the longer i do it the harder it is to get back to my own authenticity and i think that's pretty bleak in terms of mental health and all associated mental health sides of things um and then you've got the physical side of things as well if you're utilizing enormous amounts of energy and that you're on the verge of things like burnout and your anxiety levels are higher those prolonged ongoing levels of anxiety can lead to things like chronic fatigue you know fibromyalgia those sorts of issues where if your body is is in a high state of anxiety or fight or flight and you're not allowed to do anything about it because you're masking and you're not allowed to fight or flight on ordinary everyday activities that energy literal energy in terms of chemical reactions to your body um ends up becoming toxic that's my understanding anyway and if that floods your joints and makes you feel tired and all of those sorts of things if you're having high levels of adrenaline for example just by ordinary existence it's not very good for you yes yeah i mean the knock-on effects of everything you just said can lead to some considerably life-threatening diseases.