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Talking About Autism and Masking – #TakeTheMaskOff

It was a true honor to be able to have such an important conversation with some amazing #actuallyautistic advocates. This summer we want to encourage autistic people everywhere to talk about how masking impacts their lives using the tag #TakeTheMaskOff

 

#TakeTheMaskOff Live Launch Youtube Video 7/9/2018

The Autistic Advocate, Neurodivergent Rebel, Do I Look Autistic Yet, Agony Autie

Sara: Hi there! I’m with other human beings, on a screen! So it’s quite a daunting one this one but we’re gonna have a live conversation, for about, what do you think, realistically an hour? We’ll see how it goes, we’ll aim for an hour, right yea? Cool. And we’re gonna be talking about masking, and we’re gonna go into what masking is in a moment, um, but first of all I want the fellow viewers to introduce them- uh fellow guests sorry – to introduce themselves so, Hannah would you like to start?

Hannah: Hi I’m Hannah and I run the “Do I Look Autistic?” page on Facebook and Instagram. Christa?

Christa: I am Christa, I have the “Neurodivergent Rebel” blog, and also “Neurorebel” on Twitter.

Sara: Kieran

Kieran: Hi ya’ll, I’m Kieran, you’re on my page. I’m the autistic advocate, and I blog, and I’m on Twitter on KieranRose7 as well.

Sara: And I’m Sara, I’m Agony Autie, and I’ve been invited to host this conversation, which is really awesome because this isn’t even my campaign. Me and Christa have been invited in to join into the conversation about what masking is because Hannah and Kieran have put together a really exciting campaign in the last 6 weeks called Take – is it hashtag Take the Mask Off? Or Taking the Mask off?

Kieran: Take the mask off.

Hannah:Yea, take the mask off.

Sara: Awesome, and that starts, that starts, when does that start?

Hannah: 23rd of July. We’re doing it for the English school holidays. So it’s gonna run the 6 weeks, and then the last kind of 7th week is going to have like a summary, in September.

Sarah: Awesome. Before we go in and talk about what the campaign is and what people can expect and how they can get involved, cause you’re breaking it down week by week which I think is cool. Masking is a huge subject, and if people do watch Agony Autie, the problem there is that I’ve not actually gone there. I’ve not done one video on masking, and the reason is because it has been always something that’s confused me, and it wasn’t really something that I understood until I came to the autistic community about 3 years ago, but I do it a lot. Yea, I do it a lot, and I also – I get confused about when I do it and when I don’t. Would you like to – would one of you like to explain what masking is from an autistic narrative this is of course?

Hannah: Just from my point of view, masking is when I try to act like I’m not autistic in order to fit in in the situation. Now, that could be a number of different things, but it’s kind of, trying to read the situation which can be really really difficult as a normal person, let alone an autistic person, and then controlling my behavior in an appropriate way so that they don’t realize I’m autistic or I’m panicking. Um, it could be something as simple as just suppressing a stim but it could be changing my whole personality to fit in with what’s going on, so it has very different degrees for me personally, and I think most autistic people have varying autistic experiences in their own kind of relationship with masking, but that’s my personal preference, my personal preference – my personal preference, through experience.

Kieran: I think that’s a really important point as well. Hannah says that it is very situational and it’s very individual as well, eh, that’s kind of why we’re going to get into the campaign in a bit, but that’s kind of why we want other people involved and for it to not just be us, because it is such an individual experience, and people do it in very very very different ways and for very reasons as well. Some of it is very conscious and some of it is very unconscious as well and something that you learn to do as a very small child and build on that and it becomes – it’s a habit forming thing really. It becomes a natural defense mechanism to keep people safe.

Sara: So what is it to you? what is masking to you, Kieran? So what’s an example?

Kieran: A lot of it for me would be scripting and carrying so many scripts for each differing situation in my head, and you know, if I know I’m going to some place, before I go, I’ll start perseverating on who are we talking to along the way, what are we doing [in] the situation, what are we doing, what I should be preparing for, and who I need to be talking to along the way as well and preparing the script in my head for every permutation and every single conversation I might be having for the possible 2 hours or 3 hours, and being thrown completely from what was happening – none of the scripts actually fit what happened, and – and you know- it’s kind of, it is kind of a search variant, very comedian-like. The scientific community call it camouflaging, social camouflaging. And there is, I prefer masking, but social camouflaging actually fits very well with it.

Sara:Yea I agree. Christa? What do you think that should be, in terms of masking, what is it for you. Oo!

Kieran: She disappeared!

Hannah: She didn’t want to answer that question! She was scared.

Sara:I can do mine real quick while we’re waiting for Christa…[“She’s here.”] She is? cool, cool. Literally right on time you exited. You exited right on time.

Christa: Maybe I had an internet glitch, sorry guys! RV internet. Won’t be happening again. You know I think the thing that you know, is for me, that I want people to understand, is you know, people sometimes you know when we talk to people, we can be, just suppressing like maybe some of our, some things we would normally do at home. You know you don’t run around talking to yourself and making funny noises at work, because it’s a public place, you know. You know when I was a kid there was like the “me” that I was at school and the “me” that I was at home, and now as an adult it’s more me when I’m relaxed and around my family, people who are close to me, versus me at work who is more the professional me, even now you know, you know you can come here and talk. I tried to be authentic, but the “me” who is more articulate and well-spoken is still somewhat masked, just in order to get my thoughts out in a clear way, so it’s, it’s not necessarily something that’s, you know, it’s not necessarily always intentional, and it’s not that, you know, the mask isn’t necessarily part of who I am because, I mean these, the masks are “me”, in a way, they’re just a different me. But at the same time it’s more work in the time you have the mask on, so it’s something that for me is, can be very tiring so I’d rather not mask unless I absolutely have to so unless I’m at work I try not to, I just try to relax and be myself. It’s exhausting.

Sara: I think with masking I think an important distinction to make, and I think this is why I got confused with what masking is and was, and I was like, what, do I do that? And uh, I do. The difference is masking and personas. Now everybody has personas, and I like to call them hats, different hats that we wear for different schemes, for different scenarios.. we all do it, and most humans do it, it’s not an autistic specific thing. And you may get people confusing that with masking. Let’s say well “oh everyone masks to some extent” and we’re talking about masking being specifically related to suppressing the fact that you’re autistic, right? Whereas wearing different personas is something that we do as well in very camoflauged, very comedian, umm.. and that’s why I get them so confused, because I don’t know where I’m wearing an Agony Autie hat or a work-mode hat or a mom hat, because I’m obviously a mother, or am I masking? I don’t know. And I think the distinction for me was masking is when I do pretend to not be autistic. So, when I don’t move my hands, and I really have to fight against it so my whole body has to tense up and what I make, I force myself to make eye contact and- and my head is going I can’t I don’t even know what they’re saying. When I do that I don’t know what they’re saying even. I don’t. And they’re like – and I’m like “yea yea” and I don’t have a clue but I’ll catch maybe the last sentence and it’s constantly this forfeit of you have to forfeit the energy here to mask up, and I’ve no sense because I’ve come ill with ehlers danlos syndrome – I have not been able to mask at all as well in public as I used to, that’s why I’ve gotten into so many problematic situations, especially in crying and humming, and it alarms people. Umm, so it’s difficult, I understand why people mask, I think people like you said, they do it for a level of self protection, it’s not necessarily that they’re ashamed to be autistic, it’s that, to be autistic, and and so openly, you can sort this some severe consequences from that, especially from place to place and culture to culture

Kieran: definitely there’s a lot of privilege in being able to not mask and that’s something that I noticed since we started talking about the campaign stuff there have been a few people that jumped in and said that they really want people from ethnic minorities to come in on this and talk about their experiences because for a lot of them it isn’t safe for them to not mask, they have to stress all the time, not only because of attention they might receive from the police in various countries and food mary? But also negative attention from their own communities as well who have a very ummm narrow-minded view on what autism is and how it should be treated and how autistic people should be. Umm, so yea, I think those, those what you’re saying there is really really important. There is a level of privilege in being able to drop the mask in certain times and being able to be ourselves even in our own homes. Some people can’t even do that and it’s good we can do that.

Sara: Yea totally, sorry trying to fiddle with this light it’s too heavy, sorry. I completely agree – so let me have a quick look. So do you think we’ve described some – so what are some examples of masking them? Hannah? What are some examples of you masking like, day to day, out and about.

Hannah: I mean the most common one is if I try not to verbally stim cause when I’m kind of going around the house or I’m with people I feel comfortable with I’ll literally just make the most ridiculous noise. I mean it might be quite quiet but it’s just constantly, in one bit I just go “brrrrrrrrrrrr” and I could just sit there and I could make that noise for hours and obviously if you’re just doing that sitting there by yourself and you’re wearing pajamas, people start looking at you in a funny way and they start going “are you ok do you need a hand?” and I’m like I’m just shopping leave me alone it’s fine! And that’s another thing, I would constantly wear pajamas if I had the choice, just from a sensory point of view, I would love to be able to wear whatever I wanted outfit-wise but I know that if I look, if I put my outfit together based on my sensory preferences I’m literally gonna look like I was dragged through a charity shop and *laughing* put it together as an outfit cause People start worrying about you, obviously you get strange looks, and it draws a attention to yourself as well, and I already draw attention just from my own kind of clumsiness.  I don’t want people looking at me for any other reason, so that is the most common one. Also I try not to, I do tend to move my hands. At the moment I’m holding my phone so I’m not doing it as much as you guys, cause I literally can’t or you’re not going to see a picture anymore, but I try not to do that as well so I fiddle with my hand so I’ll just end up again drawing way too much attention to myself and it’s, and then that makes me feel self-conscious that makes me want to do it more because I’m panicking and it’s just a whole kind of vicious circle of drawing attention and feeling bad, feeling embarrassed about being who I am.

Sara: Absolutely. What about you Christa? What what what are the examples of masking and the effect it has on you?

Christa: You know, for me, it can’t often be, you know, and oh my gosh speaking to myself and talk about walking around and making funny noises that’s like, why – I’m always singing to myself and talking to myself, that’s me at home relaxed, that’s not me out in public. It’s just because people you know, that’s, the stereotypical thing, is, oh “you’re crazy” or you talk about to yourself or there’s a stigma there, and you know it’s something that is actually very joyful to me usually when I’m like you know making funny voices and uh, you know quoting movies and you know, just talking to myself, it’s-  but I can’t do that, you know, in public, or sometimes I do and then I’m like “ahh!” You know like, especially at work, you’d be like “oh that was very unprofessional of me” All the sudden you’re like uhh, you start holding back, but there could also be you know, for example, hiding when you’re kind of confused about a situation, like, if you know I’ve had jobs where you know you have to go to happy hours and things like that, and all the sudden I’m in a, the loud environment, where I don’t have really bad auditory sensitivities, like some people, mostly lighting is the thing that gets me more than anything else, but, I have difficulty you know, I have very good hearing where the point where I can’t always pick out the words when there’s a lot of background noise, and so it’s like pretending you actually understand the conversation when you’re only hearing like, well every 5th word or every 3rd word and its’ like, and in the meantime in the background I’m just like trying to figure out through context clues the direction the conversation’s in, you know act like I’m engaged and all of that when in reality I’m going a million miles a minute in my brain, trying to figure out what’s going on, you know, it’s like “ahh!” you know it’s exhausting!

Sara: But even this conversation right now is challenging for us, because no offense, I do zone out I zone out all the time, it’s not because I’m not listening to you, what’s happening is, it’s strange, I overload myself, while listening to what you’re saying, while preparing what I’m going to say, whilst listening to what you’re saying,while preparing my notes, but I’m making notes, so why can’t I just stay focused on the one, auditory information, instead of the internal dialogue, and where to, cause you know cause, “uhohuhohuh” it’s just like this social anxiety right? That comes as part of it and it’s so difficult. I think with stimming [?] with stimming I’ve found that I go to a local café so I’m quite lucky when It’s empty I’m like [moving] put my hands up and stuff and I listen to music on my scooter sometimes I can’t help it I’ll just be like [raises hands] and I just can’t help it probably. What I’ve found is I’ve had those kinds of stims where I’m going to get more people go like “what the hell” but I also have plain sight stims where, hiding in plain sight stims, and I think girls get away with it quite more, because girls have to be more feminine, and you have certain feminine characteristics which you adopt but, ..I can’t do it anymore I haven’t got the hair. Normally it’s down hair! You know. You know all of this these feminine wiles and a little of this. When you get to tap and touch and actually stim a little bit in plain sight and you get called “oh but it’s just girly” it’s just that’s why autistic women and females can get hidden for so long in terms of their diagnostic journey, but I do get to do that. I get to you know “ehh” and you get to go like that [puts wrists together]. People are like “oh she’s cute” no I’m not cute I’m nervous! I self comfort a lot. It’s this this, this, constant and this, if I couldn’t do that? To mask is to not do any of that. So to mask is not to do any of that. It’s not that. None of it are, I’ve got to do this, all the way through it: “Hi I’m Agony Autie, and hahaha” I don’t know what I was saying, I actually don’t know what I was saying, because I can’t move, I don’t know what to do, and look! I can’t do it. I cannot do it. And that is so problematic for some people because you get punished for it, and you do. And I also find that if I can’t do this [arm movements] my cognitive functioning just goes, I blank out or shut down, or I freeze I guess. I freeze! And also I meltdown, so I’m not saying that I need to stim just for the hell of it. I’m saying when I’m nervous, and I need to stim, and if I can’t do that, to regulate that anxiety, what is gonna happen? Like I melt down a lot, [?] melts down unfortunately a lot and it’s often is because of masking. And it just boils up. You suppress suppress suppress suppress suppress suppress. Thump. And it’s bad. And I hope that what we have, part of what’s talking about stimming, is that, stimming is not so important for so autistics. It is for me. I’m an autistic who loves it. But not all autistic people do. But stimming I think if you do want to mask, that’s where stimming does come into it, because to stim is to be unmasked, right? Stimming is a lot of what we do hide, would you agree?

Kieran: Yea you know, I agree completely, and I think, I actually question whether not all autistics stim I think. Every autistic person stims in some way and I think the ones that necessarily aren’t more obviously with it are the ones that are still unconsciously suppressing it, and or found ways to sort of [hide in plain sight] yea in sight stims, exactly. And what you said there about autistic girls, it’s actually a really important thing and it’s something I’ve wanted to bring up as well.

Sara: Hannahs’ like, doing things with her hair, as well, yea! .. and it’s like, yes but I don’t think people realize we’re replacing more [finger movements] with .. yea!

Kieran: I think we do it in different ways, and you said you know I think girls are able to do it more in plain sight, and there’s the narrative at the minute that girls mask, only girls mask, and that shouldn’t be undiagnosed and things, but what you said is really important though because girls can fall into that bracket where they can be nerdy, they can be feminine, withdrawn and .. whereas boys are supposed to be the brusk loud, but I wasn’t like that, that’s the thing, I kind of fit with the feminine scheme more than I do the male one, and it’s um – but for me stimming it’s um, I jig an awful lot. My legs are up and down at the minute. If I was to touch my knees to the table right now the webcam would go up and down and up and down, and if we’re talking about restaurants and things like that there’s knives and forks rattling across the table and things and uh, it’s it’s – but I used to handflap when I was a child and I don’t handflap much anymore and I think that’s just because years of masking, ist just I’ve taught myself not to do it and I have had to redirect it in other ways… you do stick out like a sore thumb. But I go the other way with my suppression, I never really melted down as a child, I very rarely melt down as an adult, but I shutdown all the time, and my suppression is, I put it in I put it in I put it in, I was never the coke bottle kid as school, I never went to school and blew up when I got home. I got home and still suppressed and still mask because I didn’t feel safe at home either, and it’s – so that environment wasn’t healthy for me so it’s kind of – you know related to burnout when you talk about the mental effects of things, that’s when you start talking about burnout, obviously you know that’s something I’ve written extensively on and it’s – that’s a huge – hugely tied to masking, our whole environment leads into burnout and leads into all these mental health issues that follow on from burnout.

Sara: Burn out is basically like chronic fatigue…

Kieran: It is, yeah.

Sara: …but you can experience it without any physical disability.

Kieran: Yes.

Sara: You can experience it just from the effects of neurologically having to suppress the need to stim…

Kieran: Yeah. Mental energy that you’re using.

Sara: …or the need to emotionally regulate or sensory regulate. Yeah?

Kieran: Uh huh. Yeah, absolutely.

Sara: Let’s [???] a few comments because we’ve got quite a few, erm, a few people you know, commenting about the mental health impacts that they—they [???] with stimming. 

So um, [USERNAME??]: (reads) “I suppress my hand stims and I didn’t realize until last year. I would hold myself tense…” Yeah! “…clench my fists, or literally sit on my hands.” So I do a lot of hand squeezing on and off camera and if I’m not squeezing my hands I actually grab my leg and I squeeze the leg and, um like yeah it’s like [???] isn’t it?

Kieran: I’m doing—I’m doing this off screen right now. It’s funny.

Sara: Yeah.

Kieran: (laughs)

Sara: Just cuz you feel nervous and the nerves…it’s not going away. It’s definitely calmed down.

Kieran: Yeah.

Sara: Definitely. And I’ll probably—I’ll probably won’t be moving as much at some point but that—my body hasn’t gotten to that point yet. And…it’s not harming anyone. Right?

Kieran: Mm hmm!

Sara: So why can’t we have a conversation as Autistics about what are *healthy* stims; what are *good* stims; how do you find… you know, instead of just (deeper voice) “Don’t stim!” We get to have that conversation and that’s why I think your masking campaign is really good. I’m just gonna read another comment and I do wanna move onto the masking campaign, but erm… someone’s popped here… one second…one second, one second…. Ah, Callum, you’re so cute! He’s put “Stimming is (silly voice) FLAPulous!”  (everyone laughs) You’re so funny; I like that one! Um… ooh! [USERNAME??]: (reads) “Has anyone got any good suggestions for stim toys for the office? Something which looks professional and executive?” So I—I have stim toys which people don’t really think of stim toys—the necklace. I know it’s so ridiculous; it’s so girly, right? But you can get away—it’s around my neck and I’m *constantly* like this (fiddles with necklace). I like to (taps necklace) [???] at it because of the auditory. Um, you can have like little bracelets…but I like to take in, um, rather than the conventional sensory toys—not because I’m ashamed!—but I like crystals. I get a lot of visual stims. (clears throat) You can stim differently, can’t you?

Kieran: Mm hmm.

Sara: Stim tactile, stim visually, stim auditory, stim vocally… So it depends what your stim is. Are you taclile, are you movement, are you pressure? Um…but it’s difficult. I mean, there’s a growing market but there isn’t a huge one is there? For adult…for adult kind of—not “appropriate”—but… Say if you *wanted* to mask the fact that you’re stimming. If you’re not making it bright and like (silly voice) “It’s a stim toy! Look! Here’s a stim toy!!” (everyone laughs) If you wanted to be a little more… you know… There’s not really those options, but I do know they are out and about. I’ve seen some Fidget Cubes that I like. Wow! But they’re quite expensive as well, aren’t they?

Kieran: Mm.

Hannah: I’ve got a black and silver stim cube which looks like…it’s like, it’s just a dice. It’s like this big and it’s also got different things on each side. And that’s quite cute because I can fit it in my pocket, and I can do it in my pocket without anyone really realizing what I’m doing. And if it’s on like, a desk—because it’s black and silver—it does look like not a child’s toy. It looks like semi-okay.

Sara: Yeah.

Hannah: Obviously if someone was to look at it they would realize what it is, but it’s just like…yeah, a little black and silver cube. (Sound of Sara’s chair) I don’t have it right now.

Sara: Sorry. Yeah, I totally know what you mean. I love this one. Like this one’s broken, so it’s like (high-pitched voice as she squeezes the ball) “Ooooh!” (Kieran laughs)

Hannah: Oh, they’re my favorite! And then I squish them all back in.

Sara: Some of them are *really* hard but this one’s a really nice, soft one cuz I—I struggle with squishing and stuff with my joints. (Silly voice) “SQUISHY!” And I’ve been doing that since I was 5. (silly voice) “SQUISHY! Ooooh!” Haha! But I’ve managed—like this is the thing… I was lucky growing up. In terms of masking, cuz I *will* say, Helen Bates [SPELLING?] … This is the comment that I wanted to read out. She’s popped: (reads) “The impact of masking on mental health and self-identity is MASSIVE. Environment can give [???] permission to be Autistic. Stimming and embracing true Autistic self is proven to necessary for mental health.” Thank you, Helen! So, that’s Helen’s experience with it, and I would say I’ve been quite fortunate because I have stimmed and what I understand to be some minor tics as well pretty much *all* my life and I’ve gotten away with it. And they didn’t know I was Autistic. (chuckles) I don’t—I just don’t understand. Born in the 80s, okay, so it was never gonna happen because I could talk so much. But since the age of 4 or 5 (silly voice) “Ooh, squishy! Ooh! Squish squish squish squish!” Excessively, everyday. Grinding the teeth, (silly voice) “Squish squish squish,” biting the skin off, you know, for years… So I *did* get to… do it because people saw it as “quirky,” “funny,” “clownish”…but what happened was, I got wrapped up in *that* mask of being funny and losing myself a bit because…I didn’t know how else to be. And when I did burnout, they’d be like, “What’s wrong with you? You’re boring now!” And I—I felt I thought I had to be funny Sara all the time and it’s so difficult. So I did get to stim, but it came a bit at a cost because it came with a role. I got known to be the “crazy, quirky, kookie” one. But unfortunately when you get to high school that’s a bit “attention-seeking, narcissistic, vain” one, kind of. Multi-personality Sara, right? So, it’s difficult. It’s difficult because at the end of it all, in the midst of it all, I am just this anxious, nervous, Autistic person who was just trying to regulate and understand myself and I got so mixed and confused with my personality and identity. I think the point that Helen makes [about] masking and mental health and identity… even when you un-mask it can be pinned to you as well. So, it is so problematic, I think. Unmasking—

Kieran: I think, um…

Sara: —and staying masked? They come *both* with consequences, don’t they?

Kieran: They do, completely. Helen, um, I know Helen and I know she’s coming also from like an educational point of view. She’s a member of FIGS.

Sara: (excited) Ahhh!

Kieran: And um… wonderful, wonderful group. And so from—

Sara: FIGS. What does it stand for? What does FIGS stand for?

Kieran: Uh, “Fighting Inequality for Girls on the Spectrum”

Sara: That’s it!

Kieran: Really, it’s a crackin’ group! Really really good group and they make—

Sara: Crackin’!

Kieran: Yeah, crackin’! (laughs)

Sara: Hehe! I like that one!

Kieran: But um… Yeah, so she’s coming from an educational point of view. There was a tweet I wanted to mention earlier and it was by a teacher and it was [???], newly-qualified teachers? And it was—it was talking about how best to get your children to behave in the classroom and it was basically: for the first week, you have your class. You make sure they sit still. You make sure they look at who they—look at whoever’s talking… You put your pencils down when someone’s speaking… And it was all restrictive, restrictive, restrictive. And I tweeted back about you know, “That—that’s great for *you* but what you’re doing is discriminating against every child in that classroom.” Because not only Autistic kids stim. Everybody stims. Everybody needs some release in order to be able to focus on what’s going on, to be able to concentrate, but you know if my son—my older son—was in that class…. He stands up at the table and he spins around while he’s working. He makes vocal stims like you were talking about earlier. He’s got a great screeching one—

Sara: (vocal stims)

Kieran: And he fiddles with stuff, he fiddles with his pencil, he doodles while he’s listening…

Sara: Fidgeter. Fidgeter! Ants in your pants!

Kieran: …constantly, constantly, constantly. Yet, he’s top of the class in maths and literature.

Sara: [Like???]

Kieran: He’s *super,* *super* intelligent, but yet he does all these. But, you know. The school has made accommodations where he sits at the end of a table where he’s not going to knock into anyone. So he’s not distracting anybody. And he knows if he’s going to do a vocal stim, he like, he does it into the corner of his arm so that he’s not disturbing anybody else’s concentration. You know? And it’s allowing things like that which are allowing him not to have to mask, but I know that he’s going to go into senior school and it’s going to be a very, very different prospect.

Sara: Different. Yeah.

Kieran: And again, what Helen said—it’s that environment. If your environment is safe, then you can stim freely and the true you is there. You’re able to…if you’re at school you’ll be working at the top of your potential. If you’re in work you’ll be working at the best of your potential. If you’re at home you’ll be a great husband, partner, mother, daughter—whatever, you know? If your environment is safe, all of those things happen and you are a happy person. But the moment your environment is not safe, everything switches off and you start using up that energy to constantly suppress who you are.

Sara: I was gonna say like, for Christa though… Christa’s in the—in America though, aren’t you, my love? You’re in the United States? And it’s a completely different (clears throat) climate there because ABA is—is wildly… “WILDLY,” “wildly practiced.” WIDELY practiced there. I mean, I know it exists in the UK, but it’s kind of the standard norm, right, Christa?

Christa: Yeah, yeah. I mean—

Sara: So to see hashtags such as #embracethestim, you know? It’s okay for the Brits to be sat here talking about it. What do *you* think? Considering your schools are absolutely saturated with—with that approach to “treating Autism” as they see it. They see achievement if you act less Autistic that’s an “achievement”…so that’s masking, right?! That’s what we’re talking about!

Christa: You know, part of the—one of the things I think I’m actually grateful for being over here is that I was late-diagnosed and so was not subjected to that.

Sara: Mm

Christa: But still, you know, that can happen very naturally through your *peers,* kind of. And bullying. But I worry a lot for the kids and the young people who are literally being raised, you know… trying—When you try to make someone ashamed of just things that are just natural to them and naturally who they are, that takes a toll on your self-esteem and you know, mental health and you know… We have really bad mental health and suicide rate and anxiety and depression and those conditions are *not* inherently Autistic conditions.

Sara: Oh no! They don’t have to be that way.

Kieran: No.

Sara: Not at all. So I was gonna say: what are some of the things—I want to hear more about this campaign! So what is the campaign? We talked masking, we talked about (obviously briefly) about some of the impacts it has on us personally, about some of the confusion around what masking is and what a persona is… I do find it confusing, but I do think I’ve gotten my head around it! Masking is when you’re suppressing the urge to regulate in an Autistic way, whereas um…—But then echolalia comes a lot into masking a lot as well! It’s not all (strict voice) “MASKING”; it’s not separate, is it? You can talk about masking and echolalia may pop up and stimming will definitely pop up, right? So what is the campaign breaking it down into, Hannah? What is the campaign looking at? From…from 6 weeks, isn’t it?!

Hannah: Yeah, so the 6 weeks…personally I’m going to be doing it via live videos I’m gonna do on my Facebook and then I’ll put links on Twitter and other social media. But the main aim is that we’ve basically got a topic for every week and other advocates…we’re encouraging them to get involved or [???] like inviting you and Christa along as well. We’re hoping that we just get loads and loads of traffic to the hashtag and loads of people talking about their own individual experiences. So, um the 6 topics…I’ve got them written down cuz I would forget (with all the anxiety) what they were…  So the first one is basically [1] “What is masking?” Um, so we’re gonna talk about that in a little bit more detail than—obviously—what we have done today.

Sara: Yeah.

Hannah: Um [2] “What is stimming?” cuz again, like you said—sometimes you feel like some Autistic people don’t stim whatsoever and I think I agree with Kieran that they *do* but they just don’t present it in the same way that, you know, is like “traditional” stim like the handflapping and that kind of thing.

Sara: Yeah, yeah.

Hannah: And then we’re going to be talking about [3] mental health, which I think is really really important because the life expectancy for an Autistic person is greatly reduced and obviously some of that’s going to be to do with co-morbids like epilepsy, but a really big factor is suicide which I don’t think should—It’s not right in 2018 that suicide is a big factor on such a kind of minority group of people. It’s not fair on anybody. The next bit then is gonna be [4] burnout which we’re gonna go into more detail and I know that Kieran’s already done a lot about this, but it’s still really important because not enough people talk about it. I think we see the dramatic videos of all the kids melting down in shopping centers and kicking and screaming and the parents crying and all that kinda stuff, but we don’t talk about how that actually affects the person and what the—what happens after the meltdown, what comes after that bit. Then talk about [5] diagnosis and kind of self-identification for self-diagnosed people as well and what impact that has. I’m also late-diagnosed. I think obviously all of us in this conversation are….

Sara: (Screams!) So sorry, a fly landed on me. (everyone laughs)

Hannah: (gasp) Kill it! Kill it with fire! (everyone laughs)

Sara: (laughs) It landed on my eye! It landed there. It landed there, and then it went on my elbow!

Hannah: I’m surprised you’re still alive, to be honest. That’s not ok. Is it gone? (Kieran laughs)

Sara: (laughs) It’s gone, but I just know it’s gonna come back! Hrrrrrm! (everyone still laughing)

Hannah: Get Liam to get it! Get Liam to catch it. What are [???] for?

Sara: Liam! LIAM! It’s cuz it’s summer. We’re in the middle of a heatwave…in the UK, Christa. And the windows are all open cuz we’re like (“It’s too hot” gasping sound). And all the flies are just like: (imitates bug voice) “Land on me, land on me!” And my fight-or-flight is just like (breathy scream). (everyone laughs) I’m SO sorry.

Hannah: That’s ok! Don’t worry! Do we have—

Kieran: You need Liam with his “Karate Kid” chopsticks, don’t you—to catch them all? (everyone laughs)

Sara: (incredulously) Chopsticks with a fly? Think of the effort![??] (everyone laughs) Anyway, yeah. Sorry. I’m so sorry, Hannah.

Hannah: No, don’t worry. It’s fine; it’s ok! The week after the diagnosis we’re then talking about [6] coping mechanisms and almost like, using the mask to our advantage. Like, when it’s okay to mask—if at all—because some people think it isn’t okay to do whatsoever, um, but I do like it as a self-defense.

Sara: Yeah…but we still— you *need* to mask though. Yeah!

Hannah: Yeah! There’s [???]

Sara:  It’s not *safe* all of the time.

Hannah: No. Exactly. There’s some situations where—like Kieran—I have like a script and then… if I don’t have the script and I just go off on a tangent and suddenly talk about one of my special interests for 6 hours, it’s not gonna be acceptable. I’m gonna myself in trouble. So yeah, about learning when it’s appropriate and how to do it appropriately as well. Like, it might be worth masking, like I said, you know, going off on a massive tangent, but you might be able to keep some stims so that you can still self-regulate and still not give yourself any kind of pressure and you know, doing it appropriately like that. And then lastly, we’re just gonna have—at the beginning of September as the kids are going back to school— we’re just gonna have like a “What has the 6 weeks done?”, How it’s affected you?”, “Have you taken the mask off?”, “How do you look at it differently?” and just see what the result of the 6 week process has been.

Sara: Yeah, yeah. No, I like that. And I think it is—it’s going to take a while for some people to get used to it cuz…like for me I still—I question myself so much! I’m still like “Am I masking or am I not?!” “Am I being myself or am I not?!” And like, what I’ve also found out is this: So I’m quite burnt out at the moment…which means I’m not my usual, excited self. And when I’m *excited*—when I’m *really* excited…I can present—my personality can present off the wall. Like, (super fast) “Ahhh Oh my god! Doctor Who!! Have you seen Doctor Who? Why have you not seen Doctor Who?!” You know? Like, “Shut up about Doctor Who, Sara.”  Like, yeah. So it can go really like…you know, so *happy* that people say to me—when I do crash— it’s like: “You’re a different person. It’s different personality…” and they’re like, “Oh, is that—were you masking *then*?” And then I’m like, “Oh, I don’t know!” And I got all confused and what happens is, I end up feeling false and fake and what it is is: I’m just happy. I’m very excited. I’m very, *very* excited and it comes out as “BLAH!” But that’s energy; it’s social and emotional energy. And I burn myself out, ok? And that—that “swing,” that “rollercoaster” has taken me—it took me a while to just get used to it. And I get used to it now. I get used to the fact that there’ll be some days where I’ll be like, “Oh my god, I’m so happy that I can’t stop moving” and “Aaaaaah”” and then there will be other days where I’m happy but I—I — (sighs) I have no energy!! And—but people *mistake* that and that’s not a mask. I think that is your emotional levels draining and refilling and do you know what I mean?

Hannah: Mmm.

Sara: So I think it’s important when people look at masking, they do know… If they think of “Well, why can’t I take this mask off? Why can’t I take it off?!” Maybe you’re trying to take off something that isn’t to be taken off…or maybe—maybe…you’re analyzing a part of yourself actually which is just genuinely tired or just genuinely very happy. And it’s difficult, I find, cuz I end up just tarnishing my whole self and personality as “bad.” (chuckles) “BAD!!” And then it’s….You know, to the point that I’ve been looking at Narcissistic Personality Disorder and trying to apply it to me cuz I’m like, “I’m such a bad person. Maybe I’m a narcissist.” You know? It just—it never stops. I never give myself a break. And I think masking…being able to just be quite proud—yes, privileged. Yes, privileged. Definitely!—but proud, and very privileged and fortunate that all my life since 5, I’ve been able to go (silly voice), “Squishy!! Mer mer mer!”  And my mum and dad have never chastised me…they’ve joined in, for god’s sake!

Kieran: (chuckles)

Sara: You know, what a wonder for my mental health that’s been! And how that *has* shaped my identity and my self because that means that I *can* just be me because luckily I have often been me. But like I said, it’s not— it does come at a cost… Yeah. Let me just—Can we have a look at some of the comments? Is that ok or would you all like to—?

Hannah: Mm hmm! Yeah, I’m excited!

Sara: Yeah? Let’s have a look at some of the comments!

Sara: [username] says she used to say she’s 100 miles an hour when she’s excited, with her mouth, but she’ll go home and crash from it all and she’ll use one-liners and humor as a mask. Yea, I don’t know if I use – this is the thing is where I get confused. I don’t know if I use one-liners and phrases and like “yo!” and things like that, I don’t know if I use it as a mask cause I don’t think it’s a mask I think I’m more, ticky stimmy echoes, echolalia, it’s like my way of communicating – and.. for a while I did think why did you do that, it’s so fake and it’s so – I’m not actually masking then I’m actually echoing. So do you know what I mean when we get confused sometimes with it?

Kieran: Sara do you see that as like a form of deflection as well though? If you’re reacting like that it’s maybe cause you haven’t understood what’s been said or you haven’t heard properly or, you know and maybe it gives you that little time to formulate a proper response or to consider what’s been happening.

Sara: Yea sometimes what I’ll do is, it’s really strange, my brain will give me a really long complicated thing to say, while saying …. At the same time, where to go next, so it’s burnout, cause you’re – it’s like, this dual, not dual, this multi-dual, kind of panicking?, especially about when it’s about, I think it’s [chek paula Unic] who said we have invisible guns to our heads. What he means by that is that you don’t need someone to tell you to not stim, to not hum, it doesn’t matter if that’s over, it doesn’t matter if you’re an adult. You’ve had it engrained in your so much that even the idea of doing it is problematic because it’s such a boon, it’s – How is Kieran supposed to, when he’s nervous go down the street and go “ahh, oh oh oh!” I can do it and look, little Sara girl! Gender, gendered politics is “ahh my god!” and people are like “my god is she okay?!” and t… Kieran could probably get arrested, right?! So like

Kieran: Yea, completely.

Sara: With unmasking and with stimming, I would argue that with guys who stimming and especially if you are from black and visible minorities, those behaviors could be perceived as a threat, and that’s not me blaming you at all, that’s me blaming society’s cock? Perception of you, as a threat, as a monster, as a bad thing. So we’ve had autistic people, ehm, though was, ehm, case in 2017 last year just in the summer, an autistic teenager was out with his carer and he was flapping his hands, he was stimming and he was humming. And the officers saw him *TRIGGER WARNINGS EVERYONE, it’s not nice* the offier saw him and within 30 seconds had this autistic person pinned to the ground. And he asked 2 questions: What are you doing? And the autistic person said “I’m stimming.” And the police said “I don’t know what that is.” Before, he did it again and the policeman was like “Right, get on the ground! What have you taken, some drugs?” and on the way had bashed his head on the tree, and the boy all the way through was saying “I’m gonna be ok, I’mm gonna be ok, I’m gonna be ok” so self-soothing, he’d gone repetitive to shutdown, as we will understand And policeman used this as more evidence of drug abuse. And the carer intervened and went “what are you doing? He’s autistic, he has learning disabilities, what the hell are you doing?!” He was stimming and the police officer was like “yea he said that but I didn’t know what that is!” And then got off him and it’s like, this, that- now that case,  that gentleman was white. In the other 2 cases that happened in the last year, 4 actually, we’ve lost 4, 4 of our vulnerable black men have died from police intervention, from meltdowns, epileptic fits, from this [hand movements] from this [humming], from this [movement]. So little white pale frail Sara, of course she can take off the mask and embrace stim. That’s what we mean when we talk about privilege. But when other people are losing their lives from it? That’s when with any movement where we’re trying to form an identity and a culture, we always have to balance it with the civil rights, and what is the cost, what is the cost, and how do we protect? And you do it from awareness, yes, but training, because what that police officer and many have demonstrated is, I don’t have a clue what stimming is or autism in action I’ve had no autism training at all. None. Zilch. Zero. And I would argue that anyone with juive or care? Especially anyone who comes in contact with the public, would need that training, considering the lives that we have lost, needlessly in the last year or so. Well, things are going on more than that, but.

Kieran: This falls back on social responsibility as well because society has a responsibility to educate yourself about autism and the best possible place to learn about autism is from autistic people, not from non-autistic people who read books and then study us

Sara: Yes

Kieran: And there is a huge lack of societal responsibility in every aspect of society, not just in criminal justice and police, and its education and health. Every single aspect of society is woefully lacking in understanding about this, and lacking acceptive of us as well and this is one of the reasons why when Hannah and I first started talking about this, this is why I wanted this conversation to happen because masking is such a fundamental part of what stops us from being who we are, and it’s society that causes this to happen, gives us this need to protect ourselves and be able to say to each other – I’m not going to be me, I’m gonna, I’m gonna hide myself. We shouldn’t have to protect ourselves and what other people think about us and what it has to be. None of this should happen. And yes we live in a world where, you know, this is the world we live in, we live in the world where people are scared of us to a degree because tehy don’t understand us and then that’s where ABA comes in. I noticed just from a little tangent there, I noticed someone earlier saying, I think someone from the UK, saying ABA isn’t a problem for us here. ABA is a huge! Problem for us here in the UK, and it’s, you know, people look to the UK as being one of the former things in the countries to learn about autism, but for every step forward that we take, there’s a separate channel that takes a step backwards because behavioral therapists in the UK are becoming, it’s rife with them and becoming more and more prevalent. Uh, yea. …[?] ABA. And there are so many different names for it, there’s sunrise, and..

Sara: Oh god, I had an argument with the sunrise lady, years ago.

Kieran: It’s behavioral therapy.

Sara: She gives a [???] letter? An autism acceptance play. They had her there!

Kieran: This is the thing, all of these people think that they are doing us good, think they are doing the right thing, and what they’re actually doing is just harming us! And it’s

 

Sara: But they get hurt when they hear like that it they shutdown. What do you mean I’m harming you? I was trying to help! And what we are, in being autistic, in terms of actual logical thought, to hurt you, it does harm us.. things like this sunrise program, oh my goodness me. But I was going to ask, I was just going to say I was looking that, Lee’s pointed out here that women aren’t immune from police brutality as well, and Daniel J. said it was a very sad situation, absolutely. And I was pointing out that men are more susceptible to that in terms of their mortality. I totally agree, and I’ve experienced that myself with security, I’ve been constantly called on me and I have to go to them, purely for just being autistic and in pain. And they said “well you must’ve done something!” This [finger movemetns[ this is what I did, this [ finger movements]. And I asked for someone to review my medication, and that’s enough to be rude and arrogant and they analyze your face and the tone of your voice. It doesn’t matter if you don’t swear. It doesn’t even matter if you say please and thank you or sorry. They will call you rude and aggressive and it’s, it’s scary. It can be scary. And, sorry to sound, fi that sounds negative [??], if that sounded negative but, it’s just .. you know, it happens. Well then I was gonna say, ehm, Christa? Was there anything you wanted to add in terms of what went AHHHHH, AHHHH!!!!

(*others laughing*)

Hannah: I like how we’re all laughing. [???]

Kieran: …We can’t rush to her rescue though.

Christa: Yea, there’s nothing we can do. Oh why.

Sara: What the

Hannah: I think I saw it on her screen, I was just like [frightened face]

Christa: Yea I saw it.

Hannah: Run, Sara, run!

Sara: Where is it, did you see it?

Hannah: I did, I saw the bee!

Sara: Did you see it? Did you see it?!

Hannah: Yes! It was pretty giant!

Sara: That [???noun] is useless, Julian! I’m not mad, no but we can’t exterminate the bees, are you kidding me? They’re endangered, they’re endangered! So even if it came up to me like “ahhH!!” I wouldn’t kill it I would just scream throughout the whole ordeal. Nasty fly, that’s fine. Can you close that [to Julian]? Thank you. People are like [?? Noun?] are brave *laughing*. Can I just apologize for being auditory overload? I hate – I auditory overload so many people. The screaming is such a – it’s such an instinctive reaction. Anyway, Christa there anything you want to talk? I’m going to start rambling a little bit, wrapping it up now, I have really enjoyed this I was really nervous, bee made me nervous, but I think it was really nice because at one point I just kind of stopped. I was listening to what you were saying, but I was looking around and I could see we had all settled, I keep hearing the buzzing, ah ha ha ha “bzzzz” You blocky monster where are you, where are you? I can’t hurt you either you little rat. Anyway, but it was nice because I could see we had all kind of settled, and a lot of us were like – you know we weren’t stimming a lot, and you know it’s because I was able to manage a bit – and regulate it and calm down. It was just nice! It was just nice and a lot of talking from people who, who aren’t judging every single facial expression that I make, cause I make so many, and it’s only when I look back, and I’m like why can’t I control that? Why can’t I turn that down a little bit, but you don’t judge me, and to have that, that space, to I don’t know, be able to talk about masking and not have to mask! That’s refreshing. That was, you know, so thank you is what I’m trying to say. [mouth noise] Cool! So yea, should we go around? Should we go around? Is there anything you want to say Hannah, before we go?

Hannah: Firstly I want to thank you, for like hosting the whole thing, so thank you for doing that and just in taking that and being so brave cause I think all of us, like said in the group chat before this was happening, ‘ah I’m so nervous! Why am I so nervous’ so thank you for leveling us all and keeping us on track as well, because I feel like this could’ve ended in carnage if you weren’t like in control of the whole situation.

Sara: You’re giving me way too much credit, way too much credit, come on, you’ve come to us with a brilliant conversation and a brilliant campaign, and I’m going to think about how I can get involved. I’d love, I’m going to have a little thought of what the different subjects are. Christa you do Neurodivergent Rebel don’t you my love, and you have a blog so I’m sure you’re going to be joining in during week 2, yea?

Christa: Oh yea working on some stuff. I’m really grateful you guys invited me I think this was such an important topic and you know, we need to talk about it because you know, the end goal is for autistic people to just kind of be themselves and nobody think anything of it because it’s completely natural and normal, cause they’re like “oh ok.” You know, they know what it is. The best way I think is to be public about it and just be out there and be visible you know and just kind of share what that is, and I’m just amazed to be with 3 really fabulous people here! Lots of amazing topics and stuff, so thank you guys so much for inviting me!

Sara: Thank you, thank you Christa. And Kieran?

Kieran: Hello! [hand movement]

Sara: It’s like what was that? That was a stim, okay?! That was this [hand movement], that was a hide in plain sight stim! Or just, a really obviously one? Ah you’re so good you get away with it mate!

Kieran: I just want to echo what the others are saying. Firstly, yes, thank you, for doing this quite for you Christa as well. And Hannah, I wouldn’t be doing t his if it wasn’t for you either so this is, I just hope it makes a difference, and I want this to be a platform for other people, and that’s the most important thing that happens here and that there are lots of autistic people that don’t understand themselves very well and don’t understand autism very well and don’t understand other people’s experience of autism so I think it’s important that you know that they can get involved in this and can learn a lot about other people and about themselves in the process by doing that because we do learn through learning about others. And yea, it’s gonna be 6 weeks of probably mayhem, but I just hope as many as people as possible can get involved and share their experiences and just, and, to be encouraged to be themselves as best they can, that’s the most important thing, not necessarily – to keep themselves safe, but to be themselves as much as they can. Because at the end of the day, masking kills us. It physically, mentally, it kills us, and literally kills us, so it’s so important that people understand themselves, that parents understand their children, and that society as a whole learns about this and learns about the impact that they are having on us.

Sara: Thank you Kieran, thank you so much my love. Echo echo echo, people are saying! “Thanks guys it’s a great live video” Thank you from [name] Thanks to Amanda Briggs I think that’s the FIGS lady? You’re coming up with some words I’m going to use forever!

Kieran: It is yea

Sara: Thank you, Awesome! Our number one column, you’re coming up with some words that we… forever! Stimpecable [silly voice]! Yes

Hannah: Flappulous!

Sara: You need to make me a document with stimmy words! .. And then put them out in the live chat. Stimpecable! Yes. Gonna have that one now. Funstims! That’s a thing I do. Four hugs from John Greenely [hug motion silly voice]

Hannah: Did you feel it John, did you feel it?

Sara: [puts hat on, makes impression of Dr. Who] I mean come on if there’s anyone more alien, if tehre’s anyone more autistic than

Kieran: Ah Dr. Who is definitely autistic, everyone incarnation of Dr. who is autistic!

Sara: Yea I mean come on. He’s an alien, he’s a human who’s basically having to be – the actor has to think right. I’m an alien, so I’m an alien who has to pretend  human, and that is literally so much of who I am, when I saw the Doctor I was like “why do I identify with an alien?” Come on! Out of all the people, the strongest I identify with, the strongest bond is an alien?  Ok. That’s before I knew I was autistic. And now when I meet so many autistic people I’m like “hoovian hoovian hoovian hoovian hoovian hoovian, yea ok that’s cool” so we instinctively are drawn to each of our personalities or our tribes, and that is quite nice. If you do feel alone, look at the people around you. Look who’s gravitated to you in your life really closely because you do, I find, by accident, end up gravitating towards, whether it’s through film, media, whether it’s friendship circles, whether it’s through books or text, you do find yourself, through it all,, through masking and through all that, the suppression of yourself, you don’t’ find it unconsciously. Not always. I don’t know, have a little look in your life closely. I’m surprised at some of the things I’ve done in my life because I’m like wow, it’s like I knew, that I was autistic, but I just didn’t know the name.

Hannah: One of my oldest childhood friends, he was recently diagnosed as an adult as well and we were so so close at school. And we were both a bit like you said to everyone, that we were kind of quirky a bit strange, a bit like “oh it’s just them”. And now we both … have a diagnosis although we are not in each other’s lives as much as we both have grown up and have moved away from our home town.

Sara: Yes, well, one of my best mates was autistic, and she has EDS, and we were both diagnosed in our mid-20s so come on, it’s like the best friend out of anyone, I’ll have you! Both autistic both falling out of our joints it’s like, “what’s up?!” How did we do that? We tried, we tried. Neurotribes. Read Steve Silberman’s Neurotribes if you’ve not! I say that and I’ve only read a third of that. I’m speaking to him going “I’ve not even read your book I’m sorry!” cause my reading is terrible. I can’t read books. I’m really bad.   So yea, anyway…I’m waffling on but we’ve had a brilliant reaction, we’ve had so many comments and I think, we’re all going to have a read through of them aren’t we, once we’ve had some time to recalibrate and maybe have a little go at answering them, so thank you everyone for watching this unengaged, uninteracted, it’s not easy sometimes putting out what you think, so!

Kieran: Just before we go Sara, just before we go, if anybody wants to get involved, it’s opened to non-autistics as well if any parents want to talk about their experiences, their children masking, anything like that, on facebook, twitter, and I know you guys are on Instagram as well. Instagram, Hannah. Hehe. All you need to do is go to the search bar in wherever social media platform you are and put in the hashtag, #Take the Mask Off, and everything involved with the campaign will be popping up, every tweet, every post, every comment, everything that’s that hashtag on it will come up, so  anybody can follow it and anybody can join in and take part and talk about them, we can talk about their lives.

Sara: Well, I’ll be sharing it loads any videos you do I’ll be sharing it and I’ll be watching what you’re doing and hopefully joining in as well definitely. Well, thank you so much Christa from Neurodivergent Rebel for joining us, and thank you to Hannah and Kieran for putting this campaign together and for wanting us! To come in and be like oo [silly voices]. So yea thank you so much! I’m going to go and have some lunch I think after this, I’ve not eaten today, [???] …gnattering, cause now I’m like [sings with hand movements]. Yea, that’s what I’m like. Buh-bye everyone, thank you for watching!

 

 

 

More info, including my follow up video can be found here.

 

 

One comment

  1. Absolutely breath taking. As a direct support provider in a local company, I worked with many on the autism scale. They are amazing and beautiful people, with hearts and souls, and more often that not? They are geniuses and incredibly creative. I pray we can break the stigma. ❤

    Liked by 1 person

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