Autism Expert: What Autistic Masking Feels Like From The Inside

0:00Dr Martin Brunet: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. Getting a diagnosis of autism can be releasing and freeing, but doesn't necessarily mean, oh, now all my challenges are over. For people who are exhausted by masking, sometimes it's worth thinking, what would be the consequences if I never masked? Because actually that might be problematic in another way. When do you think this performance stops becoming an act and starts becoming necessary for survival?

0:36I think it becomes survival when there's constant low-level trauma and rejection that is eating away at you. Or when you're having to do it so much, the space in your life to unmask is too limited. You're then left burning out. The moment the mask appears is only the beginning. The bigger question is this. What are autistic people actually trying to protect themselves from? they're trying to protect themselves from. 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.

1:14Please enjoy the episode and always remember, you're not broken, just different, and you have always been enough.

1:22dr martin people think that masking is just pretending to be someone that you're not but that's not what it really feels like from the inside is it no i'm sure that's not and and i think there's a lot more to it than that as well so to some extent people describe needing to behave in a certain way and almost like they're acting a bit but i i do think one of the really key things about masking whatever we mean by that and you know we're going to unpack that in this episode is a lot more than just what you do but it's also how you perceive the world and how you interpret the world and i think if you just think about it as pretending to be someone you're not like an actor that can miss the whole part of trying to interpret what's coming to you and what you're perceiving um which is a for me a really key part of autistic masking yes yeah no it's a lot very interesting i think we've got as you said a lot to unpack and by the end of this episode i really want people to understand what it feels like to have yourself completely stripped away as a result of years of masking yeah and i really want people to remember one question that we're going to come to at the end after years of masking and losing yourself how do you rediscover who you actually are yes but before we get there we're gonna start with the moment the mask begins yeah and tell me about a patient that you've seen who you've never forgotten about their story yeah so it's really i mean there are so many patients neurodiverse patients and and neurotypical patients who I will never forget.

3:06And so I could have picked a lot of examples. But here, I just wanted to think about actually not everyone with autism either can mask or chooses to mask. And we've got to remember when we think about masking that autistic spectrum is a very wide spectrum and some at one end of that spectrum might be nonverbal or very limited communication and completely unable to mask. And we need to acknowledge that. I think there's also some people who never learn to do it. And I think this is quite important because we can see masking, is it a good thing or a bad thing? It's something we're going to talk about and it's kind of neither.

3:45But sometimes the consequences of never learning to mask can actually be as problematic as masking all the time and exhausting yourself. So the patient I was going to think about was actually a man about 30 who had basically never learned to mask and as a result, totally socially withdrawn himself. So I'd been kind of interacting socially a bit through school, some friends, but as friends had moved on, ended up basically just in his bedroom. And there's a Japanese word for this called hikokomori, which is where people dramatically socially isolate and it's fascinating to think about this through the years but it seems to be a bit of a new it's taking on a new shape where people might withdraw to their bedroom and they just interact online and maybe there's masking online because you can be a different persona online but that's how they interact and their bedroom becomes both their safe space and their prison and there's definitely it's much more likely that someone who ends up with in hikugomori is autistic not exclusively but there's definitely an overlap there so what what i really remember about this man who was coming to see me taking a lot of courage to come and see me hadn't seen a doctor for years um and you know clearly had thought that he might have autism and we discussed that and we did proceed to get a diagnosis but then wasn't able to do anything about it.

5:26And so, you know, I often think about him still being safe but trapped, which is quite a hard thought, really. And it also illustrates, you know, getting a diagnosis of autism can be very releasing and freeing, but doesn't necessarily mean, oh, now all my challenges are over. So for people who are exhausted by masking, sometimes it's worth thinking, what would be the consequences if I never masked? because actually that might be problematic in another way, as it is for many people. Being trapped seems to be quite a synonymous phrase with the topic of masking. Yes. You could say he was trapped in his bedroom, but at least in there, maybe a little bit online, but at least in his bedroom he was being himself.

6:11Many people perhaps who are not in their bedroom, they are out in the world, perhaps they're trapped behind the mask. Yeah, potentially. And I might be socialising, doing things, but feeling trapped all the time. And there's a really interesting discussion when I talk to people about masking, people with autism about masking. Some would say, yes, when I mask, I'm not being my authentic self. But some have said to me, but that's still me. You know, OK. And actually, we can do people a disservice by implying that if you're masking, you're not being authentic because you're not lying. When does it start?

6:49What age do you think somebody starts to abandon who they really are? So I'm still taking issue with abandoning who they really are. What stage, what age do they start to recognize that they need to behave differently, which might give a feeling of abandonment? When I talk to people and I've asked people this question, generally childhood. But it varies. So for some, it might be primary school. some it might be you know more like secondary school but usually relatively early when they start to pick up the cues that they're different that they're not fitting in that people aren't responding to them in the same way um and then how much they then feel the need to mask i think depends a lot on on the safety of their environment and how how people then respond to them being different i think we'll probably come back to how much trauma or the trauma of how people respond when you don't mask i think has a a big role to play for for many people or for their experience of masking absolutely yeah it's massive and we're going to come to that in a little bit what do you think teaches a child in those early formative years that maybe not abandoned but it almost at least internally for them it feels safer not to be themselves yeah i think that's a good description i think how other people respond you know if if other people didn't respond in a way that caused you problems or that young child problems then i don't think there would ever be an issue um so it's if people make you feel awkward or foolish because you laughed when no one else did or you didn't laugh when everyone else did um if you're being told off you know teased by your peers or constantly your parent you get a feeling from your parents that you know they're disappointed they're not what they were expecting to have a child with these challenges um then that teaches you that you need to be you know behave differently one one person said to me um you know they recognize that that they're being very sort of outgoing and um expressive made them unpopular because they weren't doing it right, if you like.

9:15And so therefore their natural extrovert, outgoing personality intentionally they made very much quieter and sort of introverted because it felt safe. And that's sad to hear, isn't it? It's heartbreaking. And it reminds me of, I've told the story many times. When I was seven, someone tapped me on the shoulder in the playground. I was minding my own business and they said, Alex, you could be one of the cool kids if you weren't so weird. and it's always made me fascinated is it possible for one comment from a teacher a parent someone on the playground to shape decades of behavior thereafter i i think it is although probably it's in the context of lots of other comments that we haven't really noticed um but also i think sometimes one comment can can affect you in a profoundly good way or one interaction i there's a a lovely quote i'm probably going to paraphrase it but for maya angelou who said that she'd learned that um that people won't remember what you said or what you did but they'll remember how they made you feel yes yes which is a very powerful quote and i guess you know when you were that age that comment at that time made you feel devastated i remember from what you described um whereas there might have been another comment that was was also negative, but you were distracted at the time, didn't you notice it in the same way.

10:42So I think to blame that one child for saying that one thing would be unfair on them, because probably there were loads of other negative things coming at you, and that was the moment that they all struck home. But also sometimes one comment from a teacher or a kind comment can actually be very protective over time or one way that one person interacts. You know, so many people say, gosh, I look back and that primary school teacher made such a difference in my life. Right, okay. So it can work both ways. So Fred, who is the little boy who made the comment, gets a free pass. Well, at least not totally responsible.

11:23I know he watches. Yes, yeah, we need to give him a bit of grace. He was probably only six or 17. so the moment the mask appears is only the beginning and the bigger question is this what are autistic people actually trying to protect themselves from i think when masking particularly when it becomes a cage they're trying to protect themselves from i think and i've always i've got a caveat this is me as a neurotypical person trying to understand rather than my own personal experience. But I think from rejection, from shame, from ridicule, from awkwardness, from saying the wrong thing at the wrong time, but rejection primarily and trauma.

12:15And do you think it is primarily driven by fear or more so just the wanting to belong? I think it's probably different for different people. I think in its worst form, driven by fear and trauma and lots of negative times when people have felt rejected, that's when masking can become, I think, its most exhausting and most difficult. But are wanting to belong? Yeah, very much so. I mean, I guess that sort of relates to rejection again, doesn't it? um but yeah you may well learn as a child that the way to be welcomed by this group of friends is is to behave in a certain way which doesn't which doesn't feel inherent to you but you've learned to do it and that makes it work um and and there are benefits from that you know you then belong you know and later on whereas when you're an adult you might have to mask again in order to get through a job interview or to function at work and you know therefore you you get to do a job that you enjoy doing um so there can be benefits but obviously it can come at a big cost which we'll we'll get to i remember after that comment you could be one of the cool kids if you weren't so weird i remember going up to the library and i was looking out of the window and observing the other kids on the playground because i was thinking what do i need to do to stop being weird and I watched, it was actually Fred, again, he did this, he sort of closed one eye really quickly and tilted his head to the side as he did it.

13:48And I remember asking my mum, what does that mean? And my mum said, that's a wink. And I noticed that a wink got a laugh and a positive response. And I remember practicing that in the mirror that night and going into school thinking, this is the day that I'm going to try and be normal. And I winked and it got a not negative response and i remember thinking this is the start of a whole new life of not being feeling weird and i suppose the question is that obviously was a conscious decision i suppose to to be less of who i really was does it always start as a conscious decision to mask or can it be automatic for some people i think it can be both you know i think a lot of autistic people would say yes i remember that was when I made that decision.

14:32But then I'd also have hearing from a parent recently who said with their older child, they saw it as a significant change that happened when they were a little bit older, and it was a very clear conscious decision, whereas their younger child had probably been masking since a toddler. So surely that was just a learned action, a learned behavior. And I think it's fascinating, you know, coming back to your experience, a lot of children, whether they're neurodivergent or not, think that being one of the cool kids is the thing you want to do. And later on, when you grow up and you're more mature, you realize actually being the cool kid wasn't necessarily the thing you, you know, the best place to be.

15:18What you'd really love for an autistic child and most children is just to say, don't try and be the cool kid, but try and be, you know, just content with who you are. And actually, if that's a bit different, we can celebrate that. And obviously, that's how you would really want an autistic child to learn to grow up. But that involves growing up in a really safe environment where the adults in your world know that this is what you need. And that's hard to get that environment or for parents to know that that would be the best way. but you know but maybe the more you have podcasts like this the more parents with an autistic child can think okay this is how i can help them um to learn how to mask when they need to but not feel they have to i think it's heartbreaking because with many people who listen and watch this podcast at some point as i explained with my story the question turns into what do i need to do in order to not feel weird.

16:22But over time, and really simultaneously, you're also trying to solve the same question, which is how do I be less of myself? Perhaps you don't actually realize that that is the question that you're also simultaneously answering at the same time. And the long-term effects of being less of yourself, I think, can lead to a real identity crisis that can cause significant issues later on in life, which we will get to in a moment. If I put that mirror on the table in front of us, Martin. How important do you think a mirror literally is to an autistic person in their journey of masking? Because I hear stories of people looking in one and like I did at home, practicing my wink.

17:01Many people practice their smiles, their interactions. Is that a common experience? I think so. I wouldn't think it was universal, but I think at that time, we talked about is it automatic or a conscious decision? And if you're going to make a conscious decision of, I want to do it differently, how do you practice that? I mean, I teach a lot of GP trainees about how to communicate and consult in a consultation. And I'll say to them, look, try this phrase, see how it works. And they'll try it and think, oh, that worked or it didn't quite come out. I better refine it or change my tone. And that's a really good way of improving your communication.

17:38communication so if you're an autistic person thinking i need to change my non-verbal communication then yeah looking at yourself in a mirror might well be the way you do that whether that is really helpful or not is another question because i can imagine you might try a facial expression in the mirror and and then you go and try it on the real world and it it doesn't really work because you haven't quite got it or you can't quite remember how to do it i think people even if you're not looking at yourself in a literal mirror i think often people are trying to reflect on how they're behaving and what they're doing in a constant way of have i done that right should i do this where do i need to look you know should i make eye contact is that too much eye contact should i stop should i do i break eye contact and that that constant reflection um might not be in a literal mirror but it's going on in their minds all the time which is yes why i can be so exhausting yeah so interesting as you said even if it's not a real literal mirror you're always observing or i certainly was always observing yourself almost like you're you're looking down at the social interaction as it's happening and you're observing yourself and in real time collecting the data points of what you observe what comments got a laugh what caused the feeling of awkwardness what caused a sense of unease and you sort of build up this own study of human behavior over time that's always being logged in your subconscious that you it's new evidence to draw on for the next social interaction and to some extent you know that doesn't that's okay and a normal thing and but there's a fundamental difference someone with autism so i will do that as a gp i'll be with a patient and sometimes i will deliberately make a pause a bit longer than I would feel comfortable with but I know it's going to work or I would close the space between me and then and I do it deliberately but the difference is it's not exhausting for me and I'm not having to do that with every interaction there are just times where I think actually you know they're looking about upset now I will deliberately come forward because I know that that's helpful and that's a communication skill that I've learned but to have to do that all the time in every environment and and it never quite feel natural is what i think makes it so exhausting because you're constantly going to that resource bank rather than ever just unconsciously doing it when do you think this performance stops becoming an act and starts becoming necessary for survival trauma and rejection is a really big thing there so if if you're an autistic person in quite a high power job and it involves social interaction um and you put on a persona to go and do that job um that might work really really well and allow you to do that job well the question in terms of survival is what do you like when you finish and are you then in a burnt out wreck because that was so emotionally emotionally exhausting um or are you constantly having to do it because at any moment you're in fear that someone at work is going to you know be negative say something critical and and because you're not in a supportive environment so i think it becomes survival when there's constant low-level trauma and rejection that is eating away at you or when you're having to do it so much and your ability to to not have your space in your life to unmask and we'll come to that term um it's useful enough some issues with it um the space in your life to unmask is too limited so that you you're then left burning out because as a result yes then you're in survival mode this is so interesting dr martin and i feel like we're getting closer to that question we said at the beginning like how does somebody actually become closer to who they really are we've spoken a lot about what masking looks like from the outside but i think what's so important is to focus on what it can feel like from the inside yeah if a patient walks into your clinic yeah what are some subtle signs do you think that somebody is masking yeah so times when i start thinking oh i wonder if i wonder if there might be autism here that's not diagnosed um i mean some of it is is fairly obvious eye contact but then someone who's depressed might not make eye contact with me um and i was really thinking this through for me it's a bit about how you pass the baton on in communication so um sometimes this can be cultural so in some cultures if you pass the the baton of communication on, I would say everything I want to say, then I would signal to you that it's your turn.

22:39And it'd be like, I would formally pass the baton on to you. You would take it and pass it back. Other cultures, I'm half Italian. And in Italy, a typical thing wouldn't be you wait till I'm finished and wait till I pass the baton, but you would interrupt me and basically take the baton from me. And then I would interrupt you and take it back. And as long as we're both doing that we know the rules it's it's fine um and sometimes you get a cultural clash someone who expects you to wait for them to finish before you grab the baton from them would think you were very rude but and and the person the italian person might think oh you're just so slow and you never get on and i you know why do you have to talk so much before i'm allowed to talk but at least both know the rules sure and it strikes me with autism that it's like there's an awkwardness with passing the baton on there's sort of is it now my turn to speak but not only that but have i have i really recognized what you've said and you just sense this i'm not quite sure how that's landed with this person or i'm not you know there are pauses that are a bit longer than you expect or or suddenly an interruption that just seems out of nowhere so it's like the passing of the baton is is not smooth in a way that as a neurotypical person you just subtly notice it's a bit wrong um which then i think is really interesting because if you get to know that person really well you can just not mind it and if you you know have a friend with autism and and you just get very used to actually this is how they are and and it's great because you know they can be who they are um and you ignore some of those things that wouldn't might make you feel awkward because you know well that's just this you know your friend that's honestly the best analogy i've ever heard in terms of explaining the awkwardness of figuring out when it's your turn to speak i'm honestly never related to anything more oh i'm glad that that landed yeah i'm gonna be thinking about that all night i'm not even when someone's talking to me now now i'm going to be thinking about where are they holding their hand up with the baton aside from the is it my turn to talk yet what am i going to say next if we could listen to the thoughts of a typical autistic person as they are masking what do you think we would hear i think we'd hear an on an internal monologue of what do i do now is this right should i do this should i do that what do they mean by that which is on top of trying to hold on to the conversation that you're talking about yes and the more they're masking the more they're having to do all of that and therefore losing the you know the pleasure of the social interaction and the good side of the social interaction um i think there are then times when you know you might be in a party and a twisted person gets into a conversation that with one person that they're really enjoying and they're no longer having to have all those thoughts in the same way and this is stimulating them and the mask can can fall off for a little while um but then that person goes to the toilet and they have to go and small talk with people and it all comes back in every way yes i think yeah an internal monologue and probably i mean i guess it depends whether that person has audio adhd as well or dhd as to how fast that internal monologue is um but an exhausting internal monologue yes i always when i go to a social event i typically i firstly i dread going i try to go as to as few as possible when i do go if i meet someone that i gel with i almost feel sorry for them because i'm glued to them from that point on if they leave i i have to go because the idea of kind of starting that process again and going through all of that early resistance of figuring out is this person good for me a good fit following on from the conversation of socializing yeah is masking more like manually flying a boeing 747 every smile every pause every laugh every sentence you're consciously flying the plane yeah i'll hand the plane to you how accurate is that analogy i i think there's a lot to like about that analogy definitely because you could definitely feel you know you go to a social event and it's like all the neurotypical people are just on autopilot and it seems very natural to them.

27:07They're not having to think it through. And there you are, yeah, having to adjust everything manually. So I think that works a lot. I think the other layer to it is it's not just about adjusting what you're doing manually, which might be what is going on inside the plane, but it's also how you interpret air traffic control and all the other signals you're getting from externally. And this is where the word masking is a little bit limited in that it always implies that you're acting, you're putting on a persona, and that's part of it. But an actor on the stage is acting a role, but they're not having any difficulty interpreting what's going on around them.

27:52And I think that's a huge part of autistic masking, that you're also interpreting everything and having to do all that manually. so I sometimes think I like the Boeing analogy as long as it's also manually interpreting the code from air traffic control, I quite like the analogy of thinking it as a bit like you're translating into your primary language some people become fluent in another language but they actually always translate to their own language and then back again to speak and that must be so exhausting they haven't learnt how to think this is me speaking as someone who's not bilingual in any way shape or form but um it's so much more exhausting so it's like an autistic person is having to translate and then translate again um so it's a two a two-way thing very much so i'm thinking of a an airplane cockpit um i guess if it's on autopilot there's you probably don't have to do too much i'm not a don't know too much about piloting but if if it's not on autopilot i I can imagine there's hundreds of buttons and levers and turn dials and things you have to do.

28:59And it's almost like you're looking out at the window and you're constantly getting information. You're having to press buttons or turn levers in response. If you are having to fly a plane or mask manually for years, what eventually happens to the person? I think it all depends on the degree of that and the degree of which you have safe spaces where you can not have to do that exhausting thing all the time. You know, it's a bit like burnout for anyone. If someone is working 90 hours a week and has very little downtime and checks their emails at the weekend, they're going to be exhausted and burnt out.

29:41So people often talk quite rightly about autistic burnout. And basically that's saying that if you're constantly masking and constantly having to do that double interpretation of how to behave and how to interpret what's coming to you, that's very emotionally demanding. So if you're doing that and don't have much space to relax and not be under that pressure, then you might well burn out. what you come home to or what what things are like at the end of the day when you're not in that environment is really key for some people that was so exhausting and draining that they are just emotionally wrecked at the end of it for some people it's exhausting and draining but they come home to an environment where they're not feeling safe and so therefore they come home and have to carry on masking and i think that's when it's the most difficult and the most draining and traumatic for someone and a lot of that comes back to to safety there's also a challenge for an autistic person to think well one of the easiest ways to avoid that exhaustion is to never go out and socialize um and and for some people it might be right to really reduce the amount that they socialize but some people would say yeah but actually you know then i'm missing out and i want to be part of the world um so it's it's perfectly good for them to go to an environment where they have to mask and then you know they as long as they can come home and have enough recovery time if you like and then they go and do it again so it's just trying to get that balance right um but that is so much harder if you're not in a safe environment so sorry to interrupt your hyper focus but i promise it's worth it our sponsor is timo the best organisational tool for neurodivergent people.

31:32Timo 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, prioritising 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.

32:09So 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. Following on from that, Martin, we've spoken a lot about the mental effort, but I think there's a cost that is potentially bigger, but also a lot harder to see.

32:54and that's identity yeah do you know anyone who has masked so well and so proficiently throughout their life that they don't know who they are anymore yes sadly so i can think of a patient um in their uh 60s who who has never felt safe and i think that's the key thing um So like I was describing just now, work environment is hard work because of having to do all that masking the whole time. But home environment, family environment outside doesn't feel safe. So this person has got to a point of thinking, no one knows who I really am. Whenever they're on their own, the emotions are huge and overwhelming.

33:48but they can't show that person because they've been so traumatized over the years that they can't show that to anyone else and then even get confused themselves about, well, who am I? And miss being able to interpret the good things about them. So I think, I mean, sadly, absolutely, and I'd say I've always mostly seen that when there's a lot of perhaps childhood trauma, but ongoing trauma either because that childhood trauma is carried with them and they've never felt safe enough to trust the people around them they might well have people who would be very safe but they never felt able to unmask with someone else and or because the environment they're in is still traumatizing and unloving which is very hard that begs the question if somebody is has masked for years and there is this big disconnect between the version of them that the world sees and the version that lives inside of them yeah can that make a experience of loneliness for that person even if they seem to have lots of friends yeah completely because i mean it might make you lonely because you withdraw from everyone um or it might make you lonely because even when you're with your friends you don't feel that you could tell them what you're really thinking or feeling and and i think we all benefit from from some relationships where we can really be who we are um and know that it's safe that we're not going to be judged um we're just going to be accepted and loved and cared for however we are so you don't necessarily need many relationships like that but you need some um and if you don't have any either because you'd never felt you could take the risk of being open like that with someone um or because the key people in your life if you do do that don't know how to deal with it or you know if you're in a if you're in an abusive home situation that's tremendously difficult all about safety i mean a lot of mental health is about safety a lot of anxiety is about safety and for sometimes someone who masks and is autistic, the only safe space that they feel they have is when they're on their own.

36:11But sometimes that's then when the emotions that they've suppressed in order to mask come overwhelmingly in. So even that place isn't very safe because they're just overwhelmed by their emotions on their own. Perhaps the greatest irony of masking is that the better somebody becomes or is at hiding their autism, the less likely they are to be able to ask for help. Why do you think, following on from that, autistic women are often diagnosed so late? Yeah. So this is really interesting. I think some of this is historical. I was thinking about this. And if, say, you're a woman age 50, around the menopause, then if you think back to what was going on in the world when you were at school, so you would have been 12 when the film Rain Man came out.

36:57Yes. Now, Rain Man, fascinating in terms of history of autism, lots of controversy around it. At the time, it was very much an acclaimed film. And at the time, it definitely raised awareness of autism. But it raised the awareness of male autism, and a particular type of autism where someone's got sort of some intellectual functions that are, you know, are very almost magical, which is not most people's experience of autism. And then there's controversy about neurotypical people playing neurodiverse roles and all of that. but just think where the world was when you were 12 and most you would want to diagnose autism before 12 these days um so it's not surprising it was missed then um and even if you're if you're 40 now well when i i've been a gp for 26 years so you'd have been 14 wouldn't you when i qualified yes well when i qualified autism no one talks about autism um it was a if they did it was a boy thing it wasn't i mean even in adult men you didn't really think about it you you couldn't have got an autistic diagnosis in an adult and it was very stereotypically male so again it's no surprise that a 40 year old woman wouldn't have been picked up at school so there's this there's this big bump of of people who um of women particularly who just got missed or this hump of diagnoses that we're we're sort of yet to make so there's plain catch-up i think the really important question now is well how do we catch up those women that have been missed if they want to get a diagnosis but are we as good now and i don't know the answer to this but are we as good at picking up autism in girls young girls now as we are as boys because if we are then this problem will become historical um but if we're still missing girls then there'll be women in 30 years time who still have been missed.

38:55I've spoken to many autistic women on this podcast and just generally out and about, and many have said that they've been labeled as high functioning. And having spoken to them more, what they actually unpicked from that is they think that high functioning really, in many of their cases, just means high masking. Is it possible for somebody to have a successful career, a successful family, a successful business, but privately they're falling apart? I mean, absolutely. And I just wanted to pick up on this, particularly in women and masking, before I come back to that question, that's right, because women, generally it's felt women probably mask more than men and more likely to mask, and quite often can make a very good, successful attempt at it.

39:44And I was just thinking, well, why might that be? And I'm sure there are lots of reasons, but partly I think how we respond to an autistic woman may well be different how we respond to an autistic man with the same traits. Because that's often the case generally with how we describe women compared with men. And if you just think about some of the terms that are thrown at women compared with the male terms. So a man, we might describe a man as being a real dog, but a woman is a bitch. You know, a man is a real bull, but a woman is a cow. A man, oh, he's such a fox, but a woman is a vixen. You know, one can be a positive, powerful thing, and the other, they're universally negative.

40:31You know, a man can be assertive, a woman is bossy. Yes. And I haven't explored this, but I'm sure, just because of the way society is misogynistic and often describes women, there will be equivalence for autism. Maybe a man is quirky and a woman is just peculiar or strange or a man's got lots of hobbies. We expect a man to have hobbies, don't we, in our gender-stereotyped society and maybe a woman is obsessive. you know you could imagine women being described in ways that makes them need to mask much more than a man um which is a societal question um so i just wanted to raise that and then coming back to your can you be really successful i'm i mean absolutely and i think if you are whatever we mean by high functioning if you're going to function at a very high level in a more neurotypical dominant world you're almost certainly going to have to mask to do that and one term i really liked that i've come across recently is code switching um i don't know if that's a term you know what does that mean so it's not exclusive to neuro um diversity but it's where we we switch our code to do a different role so you know when i go to work as a gp i definitely code switch to some extent i start acting like a gp um or if you're a leader in a company you know you're the boss you switch into the boss mode um and so to be successful you often will need to to switch differently and i you know i know sometimes you might interact like if i phoned my wife at work um where she was in a you know very um very much the boss in that environment she would just sound different she would she was in a different mode a different code because that's how she did her job really well um and so that's a normal thing but an autistic person has to do it more and you know they won't just code switch to do their high-powered job but they might have to code switch you know when they're doing small talk at a party or when they're with family members at a family gathering and they're constantly having to do that and and rarely can relax so so yes a high functioning autistic person may well have got really good at code switching and masking and maybe they also have to do it in their family and maybe they also have to do it in their social environment and that can then mean the burden is so much that everything does fall apart.

43:09I'm thinking now of a late diagnosed woman who, yeah, family fell apart, doing amazing at work, but it all didn't work and I mean she had ADHD as well and again I remember I'd known her for a long time and just both of us coming to the realisation that she obviously had ADHD and thinking why did we not tweak this years ago? Well because we didn't think about it years ago and yet now it's so blatantly obvious and it's similar with autism you sometimes think gosh I've known you for years but I haven't seen you for a couple of years and now we're all thinking of this so much more and it's so blindingly obvious.

43:51Why were we so blind? Why do you think an autism diagnosis can be the most emotional moment in someone's life? Yeah. I think it's really interesting because I've seen different reactions to an autism diagnosis, particularly when it comes late. I mean, if you're diagnosed as a child, then it'd be very different. Some children don't like it, actually, kick against it, but maybe it just becomes part of your understanding of who you are or you've just always known that you're autistic. If you're diagnosed with autism, I think of this as a male patient who was diagnosed in his 40s, I think. Actually, it really did help things click into place and fascinating in a sense that he hadn't thought about it before when actually probably people who knew him well had probably thought about it for years, but maybe not suggested it to him.

44:48Or actually, I think maybe a bit of resistance initially. And for him, very much, I mean, his autistic brain likes to understand and sometimes attention to detail can be a real feature. So actually, that really helped. And it was like a new level of understanding. But then I can think of a woman in her later life coming and saying, I think now understanding autism, I probably always had autism. And should I go for a diagnosis or not? Would it help now? And a little bit of a sense of grief of, if only I'd known this all my life, it would have made a whole lot more sense. Would I have made the same decisions?

45:30Would people have understood me differently? So sometimes it's real relief and new understanding. Sometimes it can be grief for what you've lost. Sometimes I've seen anger. You know, I think quite a lot of autistic women, if they've had a lot of trauma and maybe a lot of self-harm, may well have ended up with a diagnosis of borderline personality disorder or emotionally unstable personality disorder. Those are both labels that I really struggle with. You know, maybe you've been given a diagnosis of anxiety and depression or a personality disorder. And now later in your life, someone says, actually, this has always been autism.

46:08You might well be angry and think, well, why didn't someone tell me that years ago? or now you're slapping a new label on me. What am I meant to make sense of this? So it could be relief. It could be grief. It could be anger, which is why seeking a diagnosis isn't for everyone. Some people say to me, well, yeah, I probably have autism, but I don't want another label on my record. And that's okay. And actually, you just want to have better understanding. Let's go back to the question I asked right at the beginning of this episode, Dr. Martin. how do you know who you really are after decades of masking yeah i think it's such a good question i think it would be tempting to say well well you haven't been your authentic self all those years you've got to unmask you've got to learn how to unmask and then you'll find yourself and and i just might be an element of that but i just don't think that's respectful to the person and their life journey you know who are any of us really we're a collection of memories and experiences and you know how we've lived our life and to to say well that wasn't authentic it doesn't count would be awful and so i think the first thing i'd want to say to someone is look there was nothing in unauthentic about you when you masked that was your authentic self learning how to function in the world um but maybe you paid a price for it and maybe there are aspects of who you'd really like to be in your future that you feel you've suppressed and that you might like to now explore and allow to rekindle and come alive a bit more you've always been yourself there's always been you doing everything that you've done you might just like to allow parts of yourself to have more breathing room and parts of some of the demands you put on yourself to maybe be a little less quite often people say um people might say their children um i don't mind what they do as long as they're happy and and actually i have a real problem with that because for me happiness is a a fleeting feeling you enjoy it when it comes it's lovely feeling happy but contentment and contentment with who you are that's a real joy of life i think if you can achieve contentment whatever your circumstances so i'd say don't try and ask yourself have i been lying all this time have I been inauthentic but more could I learn more how to be accepting myself and content with who I am the journey I've been on and who I'm continuing to be I've spoken to some people and they're very fearful or they've said I'm quite frightened to unmask because even though that might be what many people say you should do you should try and be more your authentic self a consequence perhaps to them of unmasking is you might have to leave a friendship group behind or you might have to leave a relationship or you might realize that something that gives you something to do with your time isn't actually in alignment with your values yeah and the benefits of having those things in their life could actually be greater than the knock-on effects of unmasking yeah should everyone try to unmask i think um there's definitely no shoulds about it um it's would it be helpful for you or not and and to sum up what would you lose because if you might lose a friendship group but actually when you step back and think about it that wasn't a friendship group that gave you life because people were always demanding that you fitted in with them then maybe that wouldn't be a bad thing um but on the other hand if to unmask you would have to withdraw from the world completely that could be a big loss um if unmasking with your your partner means they then can't cope with you um that could be a big loss but on the other hand maybe there's a problem with that relationship.

50:17So that would be a very personal decision. I think what I'd say to someone is not that it's a matter of you must unmask, but is there breathing space in your life where you're not having to code switch to mask, where you're not having to put all that effort in and where you can recharge? And if there is, then maybe... just carry on as you are but if there isn't then how do you find that space and if if there could be but you've never had the courage to ask you know maybe you might have a friend and actually you could have conversations with them and say look i know i'm often having to pretend that i fit in or you know i don't want to appear awkward and so i do these things when i'm around you and that friend if they're a good friend they'll say look not awkward at all i've you know i've always known you were a little bit different if you like but i've always loved you for it you can be as awkward as you like it's no big deal with me you know just relax be however you like and i will always unconditionally be your friend um and if appropriate i will you know i will love you um if you can find that that's gold dust and then you can really just relax with that person recharge that person not feel like you've got to put that effort on so and then maybe you can then go into work and mask so that you can function yes and i i think one challenge as well for an autistic person is to work out if i avoid going to places so i don't have to mask am i making a wise decision because actually i've been socializing far more than i have capacity for or am I using my autism, and I say this reservedly because I don't want to be judgmental, but as an excuse to avoid something that makes me anxious.

52:11So anxiety will often make us want to avoid. So people, whether they're autistic or not, may well find they have social anxiety and going to a party requires a lot of effort because of their anxiety. And anxiety will also, well, just don't go. That's the safest thing to do. But if you avoid everything, anxiety just gets more powerful. and takes more hold of you. So generally, you've got to be very careful with avoidance with anxiety. But over-burdening yourself with situations where you have to mask all the time can be exhausting as an autistic person. But an autistic person might just be anxious.