Autistic Masking and Unmasking ft. @Aspergers from the Inside

hello everyone and welcome back to yo sandy sam for a new season of autism and neurodiversity content um i'm your host sam and today we will be joined by the brilliant paul from asperger's from the inside he has a youtube channel that he's had for many years and it's really excellent i'm sure a lot of you follow him already paul is also the founder of the autism explained organization which is running a free summit in september that i have been one i am one of the speakers of so um the link to that is in the description box below if you'd like to go check that out but paul will tell you a little bit more about that so let's just uh welcome paul to the stream hi how are you over there in australia yeah pretty good um it's the end of a long week here so i'm doing all right good good so can you tell us uh for those who of my viewers who don't already know you a little bit more about yourself and your youtube channel and the summit that's coming up uh yep so basically i found out i was on the spectrum at the age of 30 a couple of years ago i started a youtube channel called asperger's from the inside because when i delved into all of the you know autism textbooks and i was reading books on aspergers and things like that and i i found that i just didn't like how they were portraying things i found that it makes sense of describing things from the outside but i thought there was something significantly missing in the the literature that i was reading which was you know what's the experience on the inside yeah um so i wanted to sort of share that with the world um and then recently i started autism explain which is has more of a focus on um helping parents and teachers understand autistic children and the idea with that is that you know parents are the most influential people right in a child's life so if we can empower parents like everywhere in the world to understand autism understand their children then they can create the the kind of supportive environments where we actually can do really well if we're supported to do really well um and unfortunately a lot of the adults that i that i speak to um sort of like myself and older we just didn't have any of those supports when we were younger um with with mixed results right some some of us were kind of lucky and did all right and some of us really paid a really heavy price for um misunderstandings so hopefully we can educate the world a little bit um and i'm really excited that there are so many other autistic voices that are popping up and sharing their own perspective uh like like your channel for example yeah well it seems like the last year or so or like the last couple of years there's been a big shift actually there's been a lot of uh new autism channels from autistic people and like just more media more books and stuff which i think is great it's like a new movement so i'm kind of excited to be a part of that um so can you tell us a little bit about this uh summit it's it's part of the autism explained uh organization isn't it yeah so uh we we ran the first one last year which was which was a huge success um and basically the the format is i have interviewed 25 autism experts from all over the world um and 75 of them yes including you um and 75 of them are autistic themselves um we have bloggers we have um researchers we have professionals we have parents we have all types of people uh from from all over the world and we have a week-long event where you can tune in and watch all of them for free and we want to basically spread understanding about autism to as many people as possible yeah that's that's very cool i was very uh happy to be a part of it my section is it's something something like i can't remember what i what i wish i knew growing up you know having a late diagnosis we talked a lot about my kind of awkward teenage years um so um i was very happy to to be a part of that and i hope that you guys will um go check it out i mean it is it's completely free um and the link is in the description box below um but uh so obviously you will uh you will clicked on a video that is actually to do with autism and masking and of course masking is a very um 2020 on brand kind of topic but autistic masking and unmasking is probably one of the things that i get questions about the most um i think it's something that particularly with autistic adults we um the people who who make it to adulthood before they get their diagnosis i guess by definition have done masking and so that's kind of like it's a really it's a really big and kind of um a juicy topic in some ways just from like an intellectual perspective you know um and and it's something that is is only really just being looked at by researchers and and professionals you know the last the last revision of the dsm it it now mentions masking so kind of professionals know to look out for that um but there still isn't a lot of guidance on kind of like how you know how you how you mask and how you unmask and should you and would you and could you kind of things so um i think it i'm really excited to be to be talking to you uh today because as i understand it that's kind of like something that that you have done and so you were diagnosed at age 30 was masking a big part of your life growing up what age did it start and did it kind of taper off before your diagnosis or is it just something that you did until you didn't um yeah that's that's always a funny question um before before i realized i was on the spectrum masking was just called coping right it was just called fitting in and having friends and keeping a job and all of these really everyday things um and in hindsight the biggest effect it had on me was i i learned from a really young age that my emotional reactions were inappropriate and therefore i needed to suppress them all now that's not a very healthy thing to do the healthiest thing to do with emotions is find a healthy way to express them right um and this is part of my special interest of emotional intelligence um that i that i ended up learning just like as a coping strategy to figure out how how can i relate to everyone around me um yeah so as i when i started understanding autism and started looking back at my own life i started realizing how heavily i was relying on certain things to as like a gimmick essentially it's almost like my facade was a party trick yeah that was really simple and really easy and really popular and got me by and worked in all of these ways but there's a kind of ironic thing that happens with masking that it if people accept you for your mask it feels like a rejection because you thought you kind of think and i don't know if anyone else has this experience but i kind of felt like if they really understood who i really was behind the mask surely i would be rejected so ironically by creating this social persona that was doing really well internally i was feeling as though i'm no one no one would accept me if they if they really if they saw behind if that makes sense yeah absolutely i went through kind of the same thing um myself my i i mean i guess i'm kind of saying what you just said my mantra was actually like fake it till you make it and i remember being about 17 or 18 or kind of leaving school and just thinking okay fake it till you make it that sounds reasonable um at some point i will make it um and then you know 10 years later 12 years later i'm thinking wait a minute you know why am i still faking this this still isn't coming naturally to me um and that was kind of like around the time that i was sort of figuring out the the autism thing um but i understand what you mean about you know it's in some ways if you're good at masking it's like it's easy it works and you know you there are autistic people who can be very popular because of masking um but knowing that it's not you and knowing how much energy it takes is really sort of like you know you really think well no one's going to like me if i'm very quiet or if i am very upfront and if i don't make everybody laugh and and stuff like that so yeah it's kind of um a double-edged sword in in that respect and it ends up kind of isolating you from the world as well because you stay in the world while you've got the energy to mask and then i would run out of energy eventually and i'd say well i guess i can't be around people anymore i'll have to withdraw by myself and then and then i'd have people saying what's wrong what are you doing like i'm okay i'm just recharging because talking to people and going out and doing everything that i thought i needed to do to interact with the world was just so tiring that i i just couldn't do it for very long so it just wasn't a sustainable solution in that way and it also kind of makes you feel like uh all of your interactions by yourself is this kind of like very isolated place rather than a sort of positive place and all of your interactions with the outside world is a very exhausting place rather than thinking like you could have meaningful interactions with other people potentially genuine interactions or you could have you know being at home doesn't have to mean being exhausted and recharging it can be something that is kind of a great a great sort of value to your life as well um so um we we were writing down some notes about things to discuss and you said ask me about my dreadlock story which is like okay so paul tell me about your dreadlocks story um so this actually has a lot to do with my diagnosis story as well because when i when i discovered i was on the spectrum and i really used that word intentionally discovered because it you know it felt like something that i stumbled across myself by accident um i started coming face to face with all my coping strategies and i realized that my hairstyle i had dreadlocks for 15 years at that time which was slightly more than well which was about half my life at that time um all of my adult life put it that way and i started realizing how heavily i had lent on this literal mask to project a persona to the whole world so the the story behind them is that um one day i was 16 and i was literally just starting to you know make some friendship connections and i'd met some people at a at a school down the road and you know just starting and someone said can i give you dreadlocks and i said what a dreadlocks anyway so i so i i had dreadlocks from that day for the next 15 years right and it radically changed how other people perceived me right so i went from being you know an an awkward pimply teenager with braces right um to all of a sudden people started thinking i was cool people started talking to me people started inviting me to places and it just the way other people perceived me radically changed literally overnight literally overnight from what from one day to the next and by by my 17th birthday all of a sudden i had friends and i was learning i was thrown into the deep end of this social world and i had to start learning to swim pretty quickly because i just i just didn't know what to do in in all of those in all of those situations but what i found is that the dreadlocks gave other people an instant connection point an instant talking point and everyone could come up and strike up a conversation about my hair which was at the time in that in you know my group you know relatively uncommon um and it was the same every time every time i went out to a party i'd have the same conversations and it would be easy for me and i started getting more and more comfortable being around people that i didn't know and and having conversations and and all of those kind of things because it started being really regular and predictable and confidence building for lack of a better word right people wanted to interact with me and wanted to get to know me and when they gave me the chance then i did really well fast forward 15 years and i'm realizing i was basically using these dreadlocks as like a party trick to project this image of confidence and i don't know who i am without them because i've never not had them i've in my like i said my entire adult life from age 16 to 30 i looked like i did what would peop what would happen if i took them off so i have a bit of a um extreme uh growth mentality and personal development bent to me so as soon as i found something that i knew i had to overcome i'm like right that's it so i committed to raising some money and shaving my head for charity which i did um and the video of me shaving off my dreadlocks on camera is still on youtube it's pretty intense um not for the vulnerability squeamish um but it was it was a huge thing to attempt to interact with the world without my safety net anymore intellectually i knew i wasn't an awkward 16 year old anymore right i had a lot of experience i had a lot of confidence i had a lot of social knowledge and i'd worked out all of these things and i knew i didn't need to lean on these as a crutch anymore but throwing away a crutch you know intellectually you don't need is still really scary so it's an emotional crutch isn't it not an intellectual one so um so that's that's really interesting that you had that kind of very um physical thing that um was like a safety i guess a safety blanket or something because i don't i'm just trying to think i didn't think i i had anything like that other than just trying to look as normal as possible like very kind of conventional beauty standards and like like i need to look normal i need to fit in um and i mean i i don't actually think that worked very well so for me masking was more on the along the lines of kind of learning about you know how to sustain conversations like people always want to talk about themselves so when i'm feeling really really anxious and i don't know what else to say i will just ask people questions about themselves which sometimes it works and some people sometimes it comes across a little bit intense like i'm kind of interviewing them or something you know other social situation um but i also noticed that when i kind of relaxed and was just more myself i you know i had a lot of social rejection and that's not just in the kind of really extreme way but um in the sense of uh so for example i went to a party and one of the one of the people there that i met uh worked in um not video games but like gambling machines he was in the gambling machine industry right so me being me i guess thinks that it would be a fantastic opportunity to start a really intense discussion about game theory and the psychology of gambling all right this is just like a random party and you know and i think i remember mentioning this to a friend later and he was just like people don't want to talk about game theory at parties but literally this was before my diagnosis i'm like but why not why not do this isn't that what's fun right um so that was kind of in my late 20s and that was when i was starting to sort of realize that um okay so it worked but it's really exhausting when i do it and sometimes it doesn't even work but then when i stop doing it something going is going wrong so is this just like a failure is this a personal failure and that's really when you know depression kind of gets in when you when you start thinking that actually that this is something that you've done wrong just just by existing um and it's it's it's interesting that the autistic reaction and the way we think about masking is so stereotypically artistic it's like it's so black and white well i tried taking off the mask and it didn't work so i'll put it back on again well i tried wearing it and it didn't work and it's really tiring so i'll just throw it in the bin yeah and it's pretty clear that both of those extremes have significant issues yeah precisely and and for me i mean i kind of made it a habit like you i was always into the kind of personal development self-improvement but i mean as a teenager i've read some of my old teenage diaries i used to keep lots of diaries and i wouldn't call them new year's resolutions like i i've i've called them new year's beratements because essentially i was telling myself this is what's wrong with you you need to fix it um and it was you know it was like insecure teenage girls stuff but it was very much done in a way that wasn't like here would you like to grow and is this the goal you're trying to achieve it was like that you're wrong please fix yourself fix your mask kind of um so these are habits these are kind of mental habits that i think are very hard it's very hard to get out of that and i think the thing that helps me with that was just a lot of therapy actually to be perfectly honest you know um so you said that you you cut when you cut off your your locks what is the um was that the immediate unmasking point is did it kind of force you to unmask or what happened after that no it was massive anti-climax nothing changed yeah right on the outside for other people nothing changed obviously for myself it was just confirmation that i didn't need that particular look in order to get by in the world um and i guess confirmation that masking is not just about that physical mask there's so much more to it than that so um i remember one day just being so fed up with anything that i literally wrote it on the whiteboard in my room i will not pretend to be okay i will never say i'm fine when i'm not fine because i was just not fine and the most triggering thing that someone could say to me is how are you so trying to hide that from the world was so draining and i felt um what's the word i just it it just wasn't it was the opposite of healing to try and keep all of that in for myself i needed to find a socially appropriate way to be more of myself and and as you sort of alluded to before this is a bit of a a gradual process like how do i be just a tiny little bit more authentic to myself and so i went to a script i'm like what script can i use when someone says how are you and i don't want to answer and the script that that i came up with is i will say pass next question and that made it really clear that i'm not just going to say i'm fine i'm not fine pass on that question do you have another one maybe maybe another more interesting question um so see i would struggle with scripts like that because i'm so uh conflict diverse that to me that already sounds like weighted that's way too aggressive i would never say something like that but it's it's probably more assertive than aggressive right you know there's a line it's really and it's really challenging something i i learned uh relatively recently is that neurotypical people freak out when you go off script if if they say how are you and you do not say fine they go uh oh i don't know what's wrong but you are supposed to say fine it's like you're on stage or something like it's your line it's your line okay fine you're going off script i don't know what to do now and so you know when when i would go you know be a at a party or something and instead of saying what do you do i would say i don't know what's your superpower or something it would really freak people out they just wouldn't know how to respond they're like you're supposed to say what do you do and i'm supposed to say i'm a teacher what do you do and then we're supposed to do that small talk for five minutes and then never speak to each other again that's how you go to a party obviously sounds really boring to be honest that actually reminds me of um a few years ago i went to this networking event um and uh i don't know it's just kind of embarrassing actually the women asked where are you from and this was a business kind of networking and yeah where are you from and i go oh well um you know i was born here but i've lived here and here and here you know i carried on for a while because it's not as simple and my mom is danish um and then she pauses and she goes what publication are you from it's like okay not only did i just really over explain that but i just completely failed at being normal and giving the appropriate answer and i really try sometimes um so yeah like you said uh about this whole kind of incremental unmasking this gradual process of how i can be how can i be a little bit more authentic every single time um you know for me i've it's only been a year and a half since my diagnosis and so this has been it's it's quite new and obviously most of 2020 has been kind of without regular social contact in the way that we are used to um but some of the things that i i've been doing are choosing the trusted people that i can kind of experiment on as it were um and you know there are some people and and intellectually i say to myself look this person has shown that they like you and they want to be around so maybe just try and relax around this person because i for me masking is not relaxing it's this constant state of basically performance you know it's like i'm live on the internet right now except i actually feel quite relaxed now but um ironically you know it's less relaxed it's more relaxing for me to be live than it is to be pretending around people because i'm trying to get them to not just like me but accept me and and not think i'm immediately strange um and so for me this sort of gradual stuff means kind of identifying safe people which i think is probably a good idea anyway to make sure that you are you know spending your time with people that you feel safe around um but you know i've noticed that uh part of masking can involve making very exaggerated facial expressions because i'm trying to mirror them in some way um over animated conversations uh putting in a lot of energy to the conversation especially if i'm tired i find i actually put more energy in to compensate because otherwise i'd be talking to them like okay yeah and you know i wouldn't give that back and forth at once um so it's it's really just identifying the things that you do when you're feeling you know when you are masking and and for me that's been kind of saying okay well you don't need to smile constantly while they're talking you don't need to to do all these things and little by little kind of stop yourself from from doing it um so did you have any strategies for unmasking what and if so what what were they i'll think about that the thing that that that came to mind as as you were speaking um has just gone from my mind but will come back if i just keep saying random words um we were talking about what did you just performing performing yeah so in in some ways um we need to be you can't just be completely a hundred percent like how you behave when you're at home by yourself is always going to be slightly different to how you behave when you're around other people just sort of by the nature of the things um and one thing i found to be really helpful is and and the whole understanding autism helped immensely in this area was just understanding what i needed and what i wanted and what took a lot of energy and what was more relaxing for me and then once i know what those things are then i can start trying to find socially acceptable ways to allow myself to do those things in public so let's take eye contact for example right i might um a big one so i can usually do enough eye contact that people don't mind so much like it's not as much as most people but it's sort of enough that it's not really a problem yeah um but especially in like a noisy pub or something like the only way i can listen is by like listening it doesn't look like i'm listening so if i just have a a little bit of an explanation like if i do this it means that i'm listening or sometimes i shut my eyes because it helps me to listen or some you know i just try and explain a little bit i don't even need to use the word autism because very often using the word autism just goes off on a massive tangent because i have no idea what autism means anyway and unless you plan on explaining it then it's not going to be very helpful yeah whereas i can say something like i'm in a meeting in an office room with you know back when we used to do that and i can i can get up from my chair and say you know i've been sitting down all day it's a lot better for my back if i'm sort of standing or you know so i'm just going to pace up and down here hope that's okay and most people will say yeah sure that's that's okay and yeah so it's like giving a little mini explanations for your behavior in a way that will understand that people will understand without being like i'm autistic i have to walk around or i'm autistic i can't hear what you're saying you know and in a way that they can understand what's actually going on even if it's not something that they need so i will find that i'm the only one getting up and stretching in a meeting but it's still okay um and i've you know even even really professional meetings with you know high-level government people it's still fine they still understand and it's not it's not a massive accommodation and even if they know nothing about autism it's still something that i can relatively easily i mean it's a bit challenging you have to be quite assertive with these things and it takes a lot of self-confidence and trying to learn how to build your self-confidence is a completely other topic that we might have that is challenging um but back to what you said before i really like the um focus on using safe people to practice around and the safest person to practice around is yourself and when you're by yourself and and i'm starting to realize the kind of things that i do when i'm by myself the kind of ways that i stim when i'm by myself and then notice this is an emotional intelligence self-awareness thing again notice how does my behavior change when i'm in a different situation oh that's interesting i wonder what would happen if i allowed myself the same behavior or similar behavior that i naturally do when i'm by myself or a version of that in front of another person and it might be just your immediate family or your closest friend or something but it it feels qualitatively different to bring another human being into that even if it's only one person and then it starts to feel like yeah this is me this is what i this is who i am this is what i like this is how i like to be and then when you choose to not be that version of yourself then it's a conscious choice and it there's there's a lot of power in having the conscious choice of this is the kind of person i am going to be in this moment yeah and i really like the phrase it's an authentic version of yourself because we have so many so it's kind of what neurotypicals do as well isn't it you know they have different versions of themselves a professional version or you know the customer service version or something like that and so that doing that in itself that's not harmful in the way that constantly masking is yeah the harmful thing about constantly masking is always is either being an inauthentic version of yourself as opposed to an authentic version of yourself or just never having the opportunity to have the level of freedom that your body needs to express its emotions and express yourself to an adequate degree yeah and what ends up happening is if we start suppressing how we're feeling um it has really big negative impacts on our health and our emotional health and our psychological health so finding more ways to be expressive and that might be through art or that might be through stimming or that might be through um i don't know creating something else but you know it's all it's all really important to try and find more ways to do that and what i find is it's because it the the autistic experience is of conforming ourselves so heavily that it's a problem obviously conforming a little bit is okay but conforming ourselves so heavily is a problem and also feeling like we don't have a choice and that we have to conform so heavily otherwise will be excluded that's the the kind of really damaging um idea that we that we build up on the inside if our mask is too strong and um yeah and i think that feeling really comes hand in hand with the with with being undiagnosed and kind of not knowing not knowing why why do you want to stim i mean for years like one of my you know self new year's beratements was was like stop biting your nails stop doing all these things that of course now i know is stimming um because i didn't know why i needed to do them as far as everyone else told me it's bad habits and so i thought i just had a load of bad habits and stimming is something that i kind of i never thought oh it's probably why i never even thought that i was autistic throughout a psychology degree um because the way that i stim is you know it's it's subtle but it's very necessary um and if somebody tells me just sit still and stop fiddling you know then that's it that you know i'm kind of shut down um and so you briefly mentioned like stimming being one of those things that's something that for me has been a part of my unmasking because i'm just saying okay well you like to have something to do with your hands all the time so stim toys seem like something that's just oh it's cool quirky autism or whatever but i really like them and they really help and um i also i'm looking into the the chewing stuff because it was one of those things where you know i was just absent-mindedly those uh little squiggly hair tie things that you can also chew on um and i noticed i was i was sitting there chewing on it and my husband came downstairs into the room and immediately i stopped doing it and i noticed myself stopping myself my husband is he's got adhd you know he's neurodivergent in his way um you know he doesn't mind how i do that but i noticed it was the reaction then i realized that i have this urge to hide it all and i don't know where it's come from because i don't remember being particularly chastised for it it's just from seeing from observing from observing what happens to other people who don't fit into the norm what happens to other people um who do these things and then realizing that that you need to to change and um and i've also found that i've started being almost annoyingly upfront about my autism to people um sometimes when it's not necessary you know it's like that meme where like nobody dot dot me by the way i'm autistic kind of thing i i think that for me that's kind of a protection that the unmasking is a protection saying look this is who i am i'm not i'm not telling you lies about that i'm being upfront now and and i think that's probably that's kind of radical unmasking has come from this uh you know trauma from past friendships that have gone wrong um where people have really like almost willfully misunderstood my intentions and stuff like that so so i guess i'm as part of having a youtube channel where i talk very openly is kind of like trying to be more open in real life and also just being very casual about it so mentioning it to people not just your closest friend but saying yes i'm autistic so that they build up a different idea of what autistic people can look like in you know in real life not just in the movies or something like that and this there's there's also neurotypical stim as well like let's just put it out there everybody everybody does if you've ever seen someone like flick a pen in a lecture theater or something right it's it's really common um and some so um there's there's a couple of things that came to mind so so firstly getting involved in the autistic community and meeting other people and saying ah you're doing that thing that looks kind of cool can i try that stim toy or can i you know um it kind of validates that these kind of these things are okay and that these things are interesting and it's it's something you can explore and i know i've definitely learnt a lot from just seeing how other people deal with things and saying look if it works for you i might try it and see what it's like and maybe it'll be something that i like and maybe it won't be um when i was and i used to work as an engineer and i would always have a pen in my hand right just always and nobody thought twice about it so it's not it's not always something that is if we find socially acceptable ways to do these things then it it can we don't always need to hide i guess that's what i'm saying yeah and and all of these kind of socially acceptable things can be can still just work in a kind of self-regulatory way like you don't need special toys um you know you just things that can blend in i mean i was always i don't know if my microphone's just gone a little bit loud or something um i was always i thought that i just had very childish taste when it came to like i really liked glitter and sparkly things and stuff like that obviously like i've got my little uh i don't know it's not really a galaxy light i feel like a bit ripped off from the description um but uh you know like i just thought that i yeah i was i was being childish and and obviously now i realize that kind of like visual visual stimming is important and it's not just oh i'm going to go out and buy loads of glittery things it's like okay well lighting is very important to me so i have to make my instead of just ignoring my heart because you know we moved in a few years ago and still we don't have lights up in various places um but really realizing that actually lighting is important and not just lighting that is functional but lighting that makes me feel like oh i'm in a kind of cool exciting place or i don't know i don't know why i like the twinkly lights kind of thing um that's something that's that's kind of uh i don't know a lot about actually the visual stimming um and and just what you said before a lot of that is just giving ourselves permission to do what we feel like doing and the hard part about that is it's a massive identity shift to suddenly become like the kind of person who insert whatever you're thinking of here right that that's a massive identity um shift to allow yourself to be the kind of person that likes sparkly things right is that is that okay with you that you that you do if if it's not okay with you then it's going to be hard to like the fir that's the first step like ourselves as a first step the next step is like the clot people close to us and then public strangers that's that's the hardest part yeah um somebody um put actually i can draw up the comments can't i hold on let me try though doing this stimming by playing with blu-tack anyone says uh potato and i used to do that as a teenager like i would create intricate little uh snails basically and twirl them around and run around that was like really a big one and now i've got that uh thinking putty stuff and it's just just as good except it's less gross so i would not have thought that but i'm looking guiltily over at my desk and going oh maybe actually that's everywhere how did you think about it um sorry i haven't had much of a chance i've been so engrossed in the conversation i haven't had much of a chance to look at the comments um this person here okay schnee roseville i stim with pens phone cables necklace pendants etc sometimes if i grab something to stim in a meeting my colleagues pass me things to fidget as they already noticed that quirk that's nice that sounds like a healthy work environment um quickly better take that off before it goes um let's see i love wearing a ring so i can fidget with it without anyone noticing and my partner likes to play with it too which fortunately is a nice feeling yeah and you can actually get spinning rings specifically to fidget with um we have got um oh a super chat from mira hundak thank you so much all you talk about really hits me in the feels oh well i'm glad that you're enjoying you're enjoying our um our live today um i can't remember actually where you're based but um you're one of my one of my special members um this person carla grace any tips for university or organizing i'm struggling a lot to stay focused and keep to a plan um that's a huge huge topic i i've got a video coming out next week about kind of like a post-summer holiday reset um and you know planning out for the next three or four months so for me personally i always at school i always took it in terms or semesters you know three months i think is the perfect block of time and you start by looking at the big picture the things that you have have to stretch into that big block of time and then breaking it down you know monthly weekly and daily um but do check out i've got already had two kind of executive functioning videos out and my third one in the series is out next week i haven't decided which day yet um now how do i get this on the masking topic like it's this is not just how we behave around others in public it's also how we let ourselves behave because of who we think we should be so like it's such a such a huge topic and this like idea of planning and just doing what actually works for you so there can be a lot of shame and a lot of stigma around well you know what works for me going to bed at 9 00 pm that works for me for example uh or being super strict with a schedule or you know i've um i i have a video that i i literally ate the same thing for lunch every day for several years right it worked it was like the best part of my day my i would leave so two two really basic everyday luxuries that i would have was making myself a coffee and sitting under the tree outside and walking to the bakery getting a fresh bread roll and having the same super sandwich and making the video was fun too because i showed people how to make it but every day but just most people can't understand that and wouldn't really get on board with it but allowing ourselves to do things that work is is part of the self-acceptance that allows us to start being more authentic in more situations if that makes sense yeah well it's no it's funny that you use that as an example because um it's when i when i talk to you about things like that um and you mentioned you know you did the same thing every day and you have this just look of sheer joy on your face and i'm like that sounds horrendous to me and i think that this is like sort of why i'm building up this kind of okay when do i go to the doctor for the adhd assessment because like the idea of that kind of i love routines but i can't stick to them every day because i get super bored um and i know theoretically the idea of wearing the same thing every day it's super helpful you don't need to keep making decisions but i can't imagine the kind of under stimulation i would get from that it's only helpful if you do not like the process if you're not trying to express yourself in the clothes that you wear and you don't feel any different no matter which clothes you wear then why waste mental energy on it but if you feel different by wearing your favorite top then all of a sudden there's a secondary purpose to the clothes that you're wearing it's like an expression it's like a choice it's it's something that's actually adding life to wear something different every day but i mean if you think about food i still can't eat the same thing every day you know and it's funny though because my husband who is not diagnosed autistic he said uh earlier in our relationship i was kind of horrified he was like i could eat spaghetti bolognese every day for a week we could just make whole batches and i'm sitting there like i have to eat something new every day i have to plan a different menu every week i can't even keep the same weekly menu but we made it work i guess well we're still married so um right um let's see um i've got just a superset from eric bosman thank you so much for that um there's no comment so hi eric thank you um let's um okay here's a good question i'm not diagnosed yet and i'm thinking about whether i'm autistic or not can you mask all your life without realizing you were doing it um yes i think yeah most definitely the the most damaging masking is unfortunately the one that we're not even conscious of because it just you can't actively work against something if you don't even know it's there and and i've definitely heard this story from a lot of people like who am who am i without the mask and i asked myself this question when i took off the dreadlocks who am i if i don't have my personality i'm losing my entire personality here yeah so who who is who what's left if i take it away yeah that kind of comes up to um to the next um the next topic uh with regards to kind of what unmasking or what masking means for our identity because masking is something that i mean i you know you build it up as a child i i think i started building it up as a child you learn how to act what is appropriate and then it becomes sort of more complex um and then during your teenage years you know typically that's when people experiment people discover what kind of a person they are they maybe go in with different groups different interests and um and so if you've spent your whole life sort of masking to fit in without really exploring yourself then when it comes to taking it away you can really have a kind of identity crisis not knowing like am i an extrovert or am i an introvert even what what do i actually like doing and this can be i think some people take it to extremes you know that they they think well do i even like playing games or was it just that this is the group that accepted me in school or whatever um and just talking about kind of like 2020 the lockdown period um which has well i'm not going to talk too much about that but you know it's a significant period of stress for everybody and i found myself reverting back to teenage comforts and teenage interests i would watch the shows on tv that i watched as a teenager that were my special interests and i started playing guitar again and i started getting back into these these hobbies that i kind of like rediscovered myself in a way that sounds rather you know i i because when i was a teenager i was i was very isolated and i spent a lot of time in my bedroom because well for various reasons but you know and so like i but i i built up this very comfortable safe place where i was playing guitar and writing songs and um you know i i just kind of like enjoyed my own company and then it was it was after that that i started becoming thinking like this is not acceptable and so during 2020 i've kind of rediscovered that and i think it's actually been okay my mental health has been up and down a little bit but um overall the journey i've been on has made me realize like yes i actually kind of like being by myself in the evenings you know i used to think oh well i have to spend time with my husband and it's like actually he just wants to go and play computer games and i just want to practice qatar so it's it's okay that we don't want to spend every single evening just gazing into each other's eyes like that's okay we both need that time to recharge um and so that's kind of like i for me i felt that the more i've unmasked the more my identity has kind of gone back and i recognized parts of myself from earlier that i'd hidden because i was ashamed um what do you think about what it means what it's meant for your identity how did you rediscover or discover the person that you are yeah so so shame can play a huge role there because if i if i see something in myself and i attach any shame to that behavior or desire or anything then it's so easy to sort of push it away and say oh that's not me that's childish or that's this or that's something else so yeah i guess i guess for me personally it's it's it's a nice process to continually discover new things about myself and to know that my identity is something that is evolving and to just be free to let it do that without worrying that i'm gonna turn out to be the wrong type of person that makes sense there's a lot of fear in that probably drilled into me from a very young age that there is such a thing as a wrong type of person and that it might be you if you're not careful if you don't conform to this rigid standard so yeah i i think sometimes it's it's just about just allowing yourself to experiment with things i find testing things and experimenting with things and playing with with things and ideas is a much safer way to explore your identity because oh why are you playing dungeons and dragons tonight oh it's just i'm just seeing what it's like because i've never experienced it before it's i'm not the kind of person that would do that i'm just seeing what it's like and then if it turns out that you're you you know it sparks something you're like oh actually i might like to do this again next week well that it it's you never really know when to until you actually go out and allow yourself to experience if if that makes sense um so yeah for me it's just all about learning the freedom to just believe that everything's okay i'm okay and i'm not broken i'm okay yeah whatever i do does not change that fact which gives me the freedom to to try different things and find out what works for me and incorporate the parts that i want to incorporate and if i don't want to be a type of person i get to choose i don't want to be that type of person i want to do this instead like i have that there's a there's a real power and freedom in the conscious choice of who do i want to be as a person yeah and i think it also gives you the power then to if you're making a decision that you want to be this kind of a person it also gives you kind of permission to forgive your your past self and forgive yourself for things that you did that maybe you were very out of character or you know they just that you did them for reasons that you didn't fully understand and so kind of like building up your identity as an adult as what happens you know for you and maybe for me as well like this this sense of very um intentional deciding uh you know what are your what are your values what are your priorities what do you like to do who do you like to spend time with um you know knowing that you're kind of doing that for me makes me think okay like i did this in the past because i was essentially walking around um you know pretty much blind to who i was and and that's you know that's that's a difficult um it's a difficult place to be and being undiagnosed is incredibly difficult um and uh can lead people to act in very strange ways because you know i i think i made a video on this last year about why autistic people can seem two-faced or something it's because you're desperately trying to fit in over here and you're desperately trying to fit in over here and somehow these two faces make somebody think that you are kind of intentionally duping them or something when really you are just responding to trying to use all the strategies that that you've learned um so we've been kind of um we've been talking a lot about kind of the the unmasking and i also wanted to talk a little bit about kind of necessary masking because there is a reason why we learned to do it in the first place um and and i think that there will always be an amount of necessary masking um especially for for certain communities so what what do you think that that might be um i prefer to use different language around it um okay i i would so there's there's such a thing as a socially constructed self maybe you did that in psychology but um it it's it's the acknowledgement that in a society when we are dealing with other people we bring a version of ourselves to that and we leave some of it out we leave some of it we keep some of it private even so it's not inauthentic to be a certain version of yourself you're just bringing the relevant parts of yourself to the table and you're keeping the irrelevant parts for this situation private for lack of a better word right so when i'm in a professional setting i don't need to tell everyone about my personal hobbies it's it's not necessarily something that i'm bringing here like whereas if i so so i play the drums for example right i really enjoy that um in hindsight it's really great stimming and gets so many um so much energy out it's great um and so in some settings i'm the drummer right and that sort of forms my identity in that setting because that's the version of myself that i'm bringing but in in a different setting it's irrelevant what i do on the weekend or if i play an instrument or not right so i'm bringing forward i'm showing the relevant parts of myself in this situation and i'm also and this is a really key point that a lot of us a lot in our community don't really understand it took me a long time to figure out this that's why we keep some things private because it's not they're not appropriate they they are appropriate for us but not in this situation so that means that over sharing and saying this is me you have to accept me often damages social relationships and i think my my theory around that and and this is definitely resonating from my experience is that sometimes the reason we do that and i'm interested if others you know resonate and agree with this is because i've i've held back myself so much that i that i it just feels wrong and i want people to know me and i want people to say yes you're okay that's good but if i force that into a situation it can look like over sharing or it can it can look like all of these other things that are leading to rejection very quickly yeah ironically kind of um keeping the cycle going i've actually got a a a video on rejection and and the cycle of rejection yeah i think i've seen that one um yeah there's a lot of comments coming in around what you just said um hollyday says i'm terrible at reading how much personal information is appropriate in which situations is that something we can learn definitely sorry definitely it's it's it's hard because social interactions are relatively complex um but it is def there is nothing about the autistic condition that prevents us from from learning that if we are taught in a way that makes sense to us so um yeah very not gentle oh no one wants to hear that no one wants to hear you talk about your dream that's not really helpful um and very often the the descriptions and the the rules that neurotypicals tell us about what's appropriate and what's not appropriate it's it they're not they're not accurate they don't give us a real sense of what's going on um and what i what i learned around that as well is following the rules of everyone else puts you on the bottom rung of the social ladder because you imagine that if anyone tells you off they must be right and you must be wrong yeah and the more confidence you get slowly you start realizing actually i'm okay to do this it's fine i know i'm breaking this rule i'm breaking this rule on purpose because i know it's there for a reason and i just couldn't give a stuff about the repercussions because it's important to me and this is who i am yeah exactly um there's a lot of drummers actually here um anna says paul paul plays drums sam plays a guitar did i hear that we can have an autistic rock band yes we'll call we'll have we'll have neuro vision somebody came up with this idea and i'm like genius um so talia says oh my gosh it's not relevant what i did on the weekend mind blown emoji um yeah i know right sometimes it just seems very relevant to us um but i guess it's about just learning different rules for different situations of course the thing that i struggle with is that i kind of i learn these rules about like okay when i was in my 20s and i was tempting okay this is not appropriate in a work setting and then i it turns out that i was being over professional and wasn't letting anybody in and i wasn't forming any relationships at work because everybody just thought i was extremely closed off you know so it kind of it's a delicate balance um and the heart one of the hardest things for our community is to get that delicate balance it's not all or nothing it's not i it's not don't mention the weekend or give someone a 45-minute explanation of saturday morning it's how do i share a little bit about my life and this is a this is a social skill essentially of conversation to share a little bit and then wait to see does the other person ask for more information or not yeah so if if you say how are you and i say yeah i'm fine thanks i've had a busy week and they don't ask about the week then they don't want to know yeah and i don't need to tell them everything if they're not interested that's kind of like uh me and youtube last year i was very like that was kind of my special interest was all the kind of stuff that i was doing learning about youtube and someone in real life would meet me and they're kind of like what do you do i'm like i have a youtube channel and i'm like i really really want to tell you everything and actually i was surprised at the amount of people who just don't care they go oh okay one person said um i think it was my dentist oh as long as you don't make a video about me and i'm like i'm gonna make a video about my dentist it's like oh actually people don't care um and i'm sure there's a niche there is a kind of a group of people who would be really interested and that is i guess the people who are here today thank you for watching um but uh yeah it's kind of difficult to to really um stomach the fact that actually people don't always care about the things that you're really interested in when you care so passionately about something it's really hard to accept the fact that someone else just doesn't so all of us have some level of interest that's probably higher than the average population um and it's it can be really hard to only share an appropriate amount about that um yeah absolutely um hold on someone wants me in their band awesome oh i'm really not that good so uh and i'm only on acoustic at the moment uh maybe in november i'll treat myself to my first election and then we'll see amsterdam i could do that i could be in a band yo bandy band or something i don't know you're a bandy band um right let's see uh if we've got any more comments and there was actually something that i still i wanted to talk about um with regards to necessary masking um yeah because you were you were talking about you know you don't have to share all these different parts of you and i was wondering what you think about kind of um i guess it kind of comes under intersecting identities when it when it comes down to race or uh you know being a kind of maybe a non-passing trans person something that is you can't hide it and and kind of like how masking might provide safety in certain contexts um and i mean for example um in the black community there's there's something called code switching which is kind of like talking from the sort of african-american vernacular and then code switching means kind of like talking like white people essentially and so it's kind of like an acceptable way of presenting yourself and it's got a lot of parallels to masking but for autistic people who you know like autistic trans people can't really hide the fact that they are tran well i mean non-passing trans people there's no yeah they can't hide that fact that already puts them in a in a dangerous position and you know how how would people like that who are already perhaps vulnerable in cope with kind of not masking but not being inauthentic about it you know when it's for reasons of safety maybe yes one of the um sort of rules of thumb that i that i use around disclosure and things like that is i kind of think if someone is going to notice anyway i have to make sure that their assumptions are they're going to make assumptions so some people like you said you used for example um you know non-passing trans right some people are obviously different maybe maybe your voice is so different that people know that there's you know you know they hear it in your voice or maybe your posture or maybe your eye contact or something is different enough that that the second people meet you they're like oh what what's what's what's going on with you right um people make assumptions about us every millisecond right it's just human nature that we do that and in that sense we need to help people to make helpful assumptions about us and so sometimes in that sense giving people more information is helpful whereas for someone else who would otherwise just be passing and flying under the radar there's no there's no need to bring up a complicating factor if it wasn't there yeah so i'm talking to someone on the phone i i'm you know someone mistakes my gender on the phone it happens all the time it doesn't for me but you know for someone maybe it happens all the time i don't need to correct them it's fine finish the conversation i'm not going to speak to them again anyway is that a battle worth fighting right whereas if it's something that people are obviously going to know about i like i personally like to head it off in advance i know that it probably looks weird that i'm pacing up and down this meeting room here's what's going on so that you so that so that you know what's going on um but i think your question was sort of getting around like safety and should i try to mask or try harder to pass for normal for lack of a better word in a situation and my thought around that is if it's a conscious choice and it's something that you have the power to do because there's a lot of power in passing if you need to right there's a lot of privilege in passing if you need to and and vice versa so if that's something that i choose to do to exercise my power in this situation then that's that's a that's a conscious choice and that's a version of myself that i'm that i'm bringing forward um yeah and also i guess the fact is that um you know autistic people vary so much in the way that they seem autistic some people might not seem autistic at all unless you know what you're looking for perhaps and some people like you said they might have visibly atypical posture or complete lack of eye contact or vocal stims or something like that and i guess the thing is it's like first of all it's not always possible to correct all outward signs or correct i say that you know you know what i mean to normalize yourself you know it's not possible to make yourself seem completely normal no matter how hard you try from from the outside and and so it's like you know people will always have opinions about uh when i say people i mean just on on the street you know we're not in a position where trans people can are are safe in general and the same people in the u.s what we've been seeing in the black community like it's very clear that black people and especially black autistics are not safe but i don't know how much of that comes from say well if if if if they just act more normal i i don't think there's a responsibility of society as well and i think that's why more education more people talking about autism and just making this shift so we can get to a point where a kid whether black or you know any any other race stimming in public people know that that's autism because people might think you know people might misinterpret it for a variety of different things but if we really start to get a better generalized awareness of autism i think that is something that we can at least that's kind of what i'm working towards the the indirect approach i suppose um it would be nice to get there it's definitely worth working towards towards that um but where where wherever we're at um the decision about masking it's more it's more about what is the reality of the social situation that i'm going to be in yeah and if we learn uh if we can figure out how our behavior is going to be interpreted and what kind of reactions that we're getting then even just that knowledge gives us the power to maybe find a socially acceptable way to stim like i i have a friend who who knits on the tram all the time right because she has to keep her hands moving and if she's just going like this people think she's weird so she just knits and it's completely fine so it's more about redirection than suppressing so yeah so so redirection is definitely a strategy um but it's it's not okay to just wish the current reality was different because it's not right now it's okay to work towards a different reality tomorrow that's that's really important but to to pretend that i should be able to to to just know that i should be able to swim in public therefore i'm going to stem in public every every action has a consequence in in a social setting and if we understand what that consequence is then we can deliberately choose to break a social rule but when we accidentally break the social rules i find that that's the that's the the one that hurts our community the most because it's not a conscious it's not a calculated thing and then we end up getting punished really severely for breaking the rules because we didn't know what the punishment was going to be and we were just so sick of following all the rules that we decided i'm not following any of the rules and then we got really punished for it um so learning what the social rules are allows us the power to start breaking them in ways that are good for us and don't get us punished for it if that makes sense yeah yeah um camille says um can dissociation be a stim or suppression of needing to stim not sure as in um like if you stop somebody from stimming i think that's what i think that's what she means you stop somebody from stimming can a result be dissociation i i think from the reason i put this up was because i i would say yes because if if i'm in an uncomfortable situation and somebody's saying stop fidgeting stop doing this sit still you know like at school or something i would try and take myself out of that situation okay so for me that is um okay right where are we going um this person says i see dissociation suppressed need for drum absolutely that's one answer to that um i found interestingly that my my stimming has changed quite significantly over the years so i used to literally drum on everything unconsciously and it would drive people crazy and they're like stop tapping on that you know that kind of thing yeah um and now i've learned to stim more verbally um and i find i don't tap on things anymore like oh that's interesting but maybe that's maybe that's just irritating i don't know because i do it all the time and i irritate myself with verbal stims so i wasn't that wasn't i don't know how i'm gonna go when i have to try and socialize again you know after code it's a it's a running it's a running joke in my household like how that the way we behave how are we ever going to go back into society find autistic people to hang out with i guess i can't actually pronounce mania kaish i don't know how you'd say that name one can't punish someone for rules they don't understand or does that not make sense to girls there are many destructive rules that are impossible to handle even for normal people um i say you shouldn't but i think it's entirely possible i i always get seemingly punished for things that i don't understand and i think that is almost possibly a universal experience of of being autistic actually yeah it's like what did i do wrong why am i getting punished so often often we know we've done something to elicit a negative reaction like why are you not talking to me why are you angry at me what what did i do to offend you right that's a punishment that's a social punishment um and if we don't know what we've done then it doesn't help anyone and then people say oh don't act like that you know what you did and i'm like yeah i totally know what i did remind me please yeah yeah i've been in that situation a few too many times um um let's just have a look more about knitting and stuff like that um so when so you've been talking a lot about kind of the um well you say the socially constructed persona which is masking but not but masking for the right reasons um i i wrote down some ideas about kind of like what you can ask yourself to work out uh kind of like what is good masking and what is bad masking so the questions that i came up with is sort of like what expense too much energy because masking is very for me it's very high energy and that's why i feel drained after social situations um what makes you feel inauthentic um what causes people to accuse you of being two-faced or you know malicious in some way when you're not intending that and what ultimately doesn't serve you um i don't know if you have anything else to add about kind of like ways that people can work out you know um because i've written here masking is a sort of gamification of life i don't know if anyone else makes noise they don't understand but i feel like i understand that it's a i turn i'm very competitive and i'm like this is a game and as soon as i figure out the rules and as soon as i figure out how to maximize the situation i'm going to win so um like i i i really love thinking about social situations in in terms of like this is what i'm trying to do and this is how you know it's not a very efficient way of doing it but it's kind of fun to turn everything into a game i think that's kind of i i suspect that's probably why so many uh autistic people play the sims because it's very much like instant feedback um you know you do a social interaction and like you can see plus or minus and so i played i guess the sims came out like when i was a teenager i spent a lot of time as a teenager playing the sims um and i guess when i talk about the gamification of life i suppose it's like when i have social interactions i s i say something like do a funny joke or something and then you see the reaction you notice that and you're like okay i'm gonna do more funny jokes because they liked that or okay that didn't work let's talk about the weather or something um so for me yeah for me i find when i'm very heavily masking i do i think of it as a as a game and i don't think about connecting with the person at all just probably you know that's my fault maybe this all this all comes back to self-awareness though um i know i've said this a couple of times already but knowledge knowledge is power self-knowledge allows us to make a conscious decision that is in line with what we want that is in line with our values and our identity and all that kind of stuff and it's not something that happens overnight if you want self-awareness you have to work on it you have to start deliberately noticing how do i feel did that go well um what do did i feel authentic like even just trying to answer the questions right those were really good questions that you were asking and if we have the self-awareness to answer them then you can actually make a decision of well i felt a little bit inauthentic here do i want to do that again not really okay great well that's good information what can i do with that information yeah right i i get very analytical with these things and where what do you think are the the best ways to foster your your own self-awareness for me i think it's been therapy and journaling mainly um do you have any other um ways or is it just kind of like your years of practice so you can't get past practice practice is um really helpful but practicing what what are you practicing um if you actually have a practice if you have some kind of self-reflection or meditation practice if you have a journaling practice if you have something then that is something that will sort of pay off over time it's worth noting that you know getting into the emotional intelligence side of it self-awareness comes from noticing physically what's happening in your body like if you want to know if you're feeling inauthentic you need to listen to how your body is reacting in a certain situation and say is that anxiety no it doesn't feel quite like anxiety i know what anxiety feels like and it's not quite that it's something a little bit different what is it like is it you know what is it and then and the the the more we um tune in to how we feel in our bodies getting a free emotional intelligence lesson here um the the easier it becomes to answer those questions and and to learn that self-awareness yeah yeah absolutely um right well i think we are kind of approaching approaching the end of the conversation um for those people who didn't join us right at the beginning do you want to just quickly talk about the summit again because i'm sure some people have seen the link in the description think well what is this so just briefly describe what the um autism explains summit is so massive online event on starts on the 21st of september and if you've enjoyed this conversation um i have interviewed 25 um autism experts from all over the world um at sam being one of them um so we we talk about um a lot of really interesting interesting topics um and it's it's broadcast as a free live event um with where you can basically tune in during that week and listen to the the interviews on demand so i'm really excited about that it was lots of fun um interviewing people and and putting it all together and um as sam just mentioned there's a free registration link in the description so yep so check that one out and um it's uh yeah the 21st of september for five days isn't it yep there are there are five new speakers every day for five days and um so the the whole the whole idea of the event is how do we take away all of the barriers to accessing content right so the first barrier is cost of an original of an event so if you go to a conference it's going to cost you a couple of hundred dollars so it's free the second barrier is well you've got to get yourself there so it's online and then third barrier is if you go to a live event you have to actually be there at the time and listen to the presentation so um in this case uh every speaker is available with there's like a 20 uh a 48 hour window and during that window you can basically watch all the videos on demand whenever you want so it takes away that barrier as well so doing our best trying to educate the world about autism and share as many autistic voices as possible great um well it's been so much fun to talk to you and i'm so glad we managed to work out a time that kind of was convenient for for a lot of people um and i've had a lot of people saying this is the collab we've been waiting for so we might actually have a future little collab on paul's channel at some point i feel like we've planned it right at some point and we actually haven't done i haven't done any filming yet so um oops um but yes there may be something in the future which is it will be more like a pre-recorded um kind of thing but thank you so much to paul for organizing this event which i think is fantastic and also for coming on my channel to talk to me and to uh to talk to all of you guys um i appreciate that there's still 262 people here after almost an hour and a half so a pretty good conversation um hope that you are all staying well and you didn't suffer too much after i took that extended break over the summer i am back now back with possibly two videos next week and then weekly videos from then on um so stay safe everybody and um i'll see you next time and thank you again paul thanks thanks for having me thanks for being a part of the summit as well and for everyone watching too it's been fun this is my first um live like this so oh really yeah i should yeah do it more often yeah yeah all right then take care everyone bye

Channel: Yo Samdy Sam

Views: 100,992

Rating: 4.958261 out of 5

Keywords: autistic masking, masking, coping strategies aspergers, emotional intelligence asd, paul micallef, autism in adults, aspergers from the inside emotional intelligence, female aspergers coping strategies, autistic masking and burnout, autistic masking definition

Id: 6WSMZrrceeE

Length: 86min 30sec (5190 seconds)

Published: Fri Aug 28 2020