#TakeTheMaskOff Live Launch with Do I Look Autistic Yet, Agony Autie and Neurodivergent Rebel


Sara: Hi there! I’m with other human beings,
on a screen! So it s quite a, 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 yeah? 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. Sara: Christa? Christa: I am Christa. I have the Neurodivergent Rebel blog, and also Neurorebel on Twitter. Sara: Kieran? Kieran: Hi, I m Kieran, you’re on my page.
I’m the autistic advocate, and I blog, and I’m on Twitter @KieranRose7 as well. Sara: Awesome! 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
that’s gonna last 6 weeks called Take – is it hashtag Take the Mask Off? Or Taking the
Mask off? Kieran: Take the mask off. Hannah: Yeah, 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, which is going to have like a summary, in September. Sarah: Awesome. Right, so before we go in
and talk about what the campaign is and what people can expect and how they can get involved
and, cause you’re breaking it down week by week in topics which I think is really cool.
Masking is a huge subject, and if people do watch Agony Autie, they ll probably notice
I’ve not actually gone there. I’ve not done one video on masking, and the reason is is
because it has been something that s always 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. Yeah, I do it a lot, and I also – I get confused about when I do it and when I don
t. So would you like to explain 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 they don t realize 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
varying degrees for me personally, and I think probably most autistic people will have their
own individual experiences and their own kind of relationship with masking, but that s like
my personal preference. My personal preference?? (everyone laughs) My personal EXPERIENCE! Kieran: I think that is a really important
point as well, what Hannah said. It is very situational and it s very individual as well,
ehm… that s kind of why we re going to get into the campaign in a bit, but that s kind
of why we wanted other people to be involved and not just it to be about us, because it
is such an individual experience, and people do it in very very very different ways and
for very different reasons as well. Some of it is very conscious and some of it is very
unconscious as well and it s something that you learn to do as a very small child and
build on that and it becomes – it is a habit forming thing really. It becomes a natural
defense mechanism to keep us 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.
I m carrying *so* many scripts for different situations in my head, and you know, if I
know I m going to a certain place, before I go, I’ll start perseverating on who I’ll
be talking to along the way, what I ll be doing, the situation that I ll be in, what
I should be preparing for, and who I ll be meeting and talking to along the way as well
and then preparing the script in my head for *every* possible permutation of every single
conversation I might be having in the next hour, 2 hours, 3 hours, and then obviously
getting thrown completely when none of those conversations none of the scripts actually
fit what happened, and and you know- it s kind of…it is very adaptive, very chameleon-like,
very… The scientific community call it camouflage, don’t they? Social camouflaging. And it is.
I prefer masking, but social camouflaging actually fits very very well with it. Sara: Mm. Yeah, I agree. Christa? What do
you think–in terms of masking–what is it for you? (sound of mouse clicking, the screen
changes) (shocked) Ooo! Kieran: Oh, she s disappeared! Hannah: (jokingly) She didn t want to answer
that question! She got scared. (everyone laughs) Sara: That’s okay! Can she rejoin, Kieran? Kieran: Hold on and yes, she can. Two ticks! Sara: Cool, cool. I can talk about what mine
is there quick while we wait for Christa and [Kieran: Oh, she’s back again! ] Oh, is she
here? (sings) Christaaaaa, look! There she is! Cool, cool. *Literally* right on time
you exited. Right on time! Christa: Maybe I had an internet glitch, sorry
guys! RV internet. So hopefully that won t happen 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 tell people, you know we can be just (like Hannah said) just suppressing
like maybe some of our–some things we would normally do at home. Like, 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 and people who are close to me, versus me at work who is more the professional
me. Even now you know, when–you know you come here and talk. I try 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
is, 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 because that s exhausting. Sara: I think with masking, I think an important
distinction to make for me–and I think this is why I got so confused with what masking
even was because I was like, Do I– Do I do that? And uh, I do. But the difference is
masking and personas. Now everybody has personas, and I like to call them hats. Different hats
that we wear for different schemas, for different scenarios, different environments, right?
We all do it; most humans do it. It s not an autistic specific thing. And you may get
people confusing that with masking. Saying, 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…
very camouflaged, very chameleon…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 (you know,
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 where
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. I don
t. And they re like and I m like Yeah yeah… and I don t have a clue, but I ll catch maybe
the last sentence and it s constantly this forfeit of do you…you have to forfeit a
bit of energy here to mask up, and I ve noticed since 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 and that s why I ve
gotten into so many problematic situations, especially when I m flapping and 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 suffer some severe consequences from that, especially from place to place and culture
to culture. Kieran: Yeah. 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 ve been a few people that have 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 suppress *all* the time, not only because of attention they might receive from
the police in various countries (including our own)…negative attention…. 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 yeah. So I think there s–what you are saying there is really really important–that
there is a level of privilege in being able to drop the mask at certain times and being
able to be ourselves even in our own homes. Some people can t even do that, or they re
not in the position where they can do that. Sara: Yeah, totally… (fiddles with light
off screen) Sorry, I m just trying to fiddle with this light cuz it s doing my head in.
Sorry. I completely agree. So, let me just have a quick look. So do you think we ve described
m– What are some other examples of masking, then? Hannah? What are some examples of you
masking like, day to day, out and about? Hannah: Day to day& I mean the most common
one is I try not to verbally stim cuz when I’m kind of going round 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 constant. I mean, one thing…I just go brrrrrrrrrrrr
(trills tongue) and I could just sit there and I could make that noise for hours and
obviously if you re doing that round a Sainsbury s [grocery store] and you re by yourself and
you re wearing pajamas, people start looking at you in a funny way. (Everyone laughs) 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, like, whatever
I wanted outfit-wise but I know that if I put my outfit together based on my sensory
preferences I m literally gonna look like I ve been dragged through a charity shop and
(Sara laughs) grabbed like six things and put it together as an outfit. And that s–that
s not okay because people start worrying about you, obviously you get strange looks, and
it draws attention to yourself as well, and I already draw enough attention just from
my own kind of clumsiness. I don t need the 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 ll fiddle with my hair& or 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 some of the examples of masking and the effect that it has on you? Christa: You know, for me, it can often be,
you know…–And, oh my gosh! Speaking to my soul with talking about walking around
and making funny noises that s like, what I m always singing to myself and talking to
myself. You know, that s me at home relaxed; that s not me out in public. It s just because
people are, you know, that s the stereotypical thing is like, Well, you re crazy you know,
if you talk to yourself right, there s a stigma there! And you know, it s something that s
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 don t–
I *can t* do that, you know, in public. Or sometimes I do and then I m like Ahh! It s
kind of, 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 like when you re kind of confused about a situation, in
like a, if you know… I ve had jobs where you have to go to happy hours and things like
that, and all the sudden I m in a 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 to 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 it s like…And in the meantime in the background I m just like trying to
figure out through context clues what the direction the conversation s in. You know,
act like I m engaged and all of that when it s like in reality I m going a million miles
a minute in my brain, trying to figure out what is going on& It s like Ahh! It s *exhausting*! Sara: But even this conversation right now
is challenging for us, right? Because no offense, I do zone out. I zone out all the time, but
it s not because I’m not listening to you. What s happening is– it’s strange–I overload
myself. I listen to what you’re saying, whilst preparing what I m going to say, whilst listening
to what you re saying, *and* making. notes& It s like Why am I doing– Why can’t I just
stay focused on the one–auditory information– instead of the internal dialogue and where
to– ….. You know cause, (distressed voice) uhohuhohuh its just like this social anxiety,
right? That comes as part of it and it s so difficult. I think with stimming like with
you Kieran, with stimming I ve found that… I go to a local caf� so I m quite lucky
when it s empty I m like [moving] you know with my hands up and stuff and if I listen
to music on my scooter sometimes I can t help it I ll just be like [raises hands] –You
know, like an idiot, or whatever–but I can t help it in public. What I ve found is that
I have those kinds of stims which are obviously gonna get more people to go like What the
hell? but I also have plain sight stims or hiding in plain sight stims, which I think
girls get away with it a lot more, because girls have to be feminine, and you have certain
feminine characteristics which you adopt so, you know… (pretends to twirl long hair)
I can t do it anymore; I ve not got the hair. Not like that! Normally it’s down here! You
know. You know all of this these lovely feminine wiles and all this. When you get to tap and
touch and actually stim a little bit in plain sight and you get called Oh, it s just girly
it s just– and 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 (poses)
and you get to go like that [(puts wrists together posing)]. These are stims!! People
are like, Oh, isn t she cute? No, I m not cute! I m nervous! 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,okay? So to mask is not to do any of that. It s not that. (rocks front
to back) None of it, Sara. I ve got to do this, all the way through it: (sits rigidly
and looks directly at camera) Hi, I m Agony Autie, and hahaha! I don t know what I m 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 meltdown a lot, I m an adult that 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. (mimics falling over) And…
it s bad. And I hope that what we can have is– part of what s talking about stimming,
is that, stimming is not so important for *all* 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 unmask,
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? Kieran: Yeah. No, I agree completely. And
I think…I actually question whether or not all autistics stim… I think *every* autistic
person stims in some way and I think the ones that necessarily aren’t more obvious with
it are the ones that are still unconsciously suppressing it, and–or have found ways to
sort of [Sara: Hide in plain sight stims!] Yeah, in sight stims, exactly. And what you
said there actually about autistic girls…It’s actually a really important thing and it’s something I’ve wanted to bring up as well. Sara: Look! Hannah’s like, Yeah! I can see
her doing things with her hair, as well, yea! …And people are like, Oh, everyone does
that! And it s like, yes but I don t think people realize that we re replacing more [rocks
and stims with fingers] with .. yea! Kieran: It’s redirected, isn’t it? I think
we do it in different ways. And I think like you about girls are able maybe to do it more
in plain sight, and there’s the narrative at the minute that, you know: Girls mask.
Only girls mask! Girls mask! And I think that stems from the under-diagnosis thing, and
it’s–but I think it is– what you said is really important though because it’s girls
can fall into that bracket of, you know: they can withdraw, [Sara: The feminine schema!]
they can be bookish, they can be nerdy, they can be the feminine…Yeah, exactly that!
They can fall into that, whereas boys don’t — boys are supposed to be the brusk loud
and–But I wasn’t like that. That’s the thing. I kind of fit with the feminine schema 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 up and down! And like if I go
out to 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
so much anymore and I think that’s because just years of masking, is just– I’ve taught
myself not to do it and I ve had to redirect it in other ways because it *is* too obvious
[Sara: I can understand that.] and you do stick out like a sore thumb. But I go the
other way with my suppression… and I never really melted down as a child. I very, very
rarely meltdown 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 masked
when I was a kid because I didn t feel safe at home either, and it s –that s, so that
environment wasn t healthy for me and then it s kind of …then, you know, obviously
we lead into burnout when you talk about the mental effects of things, that s when you
start talking about burnout. And obviously you know that s something I ve written extensively
on and it s–that s uh, huge–*hugely* tied to masking. Our whole environment leads into
burnout and leads into all of these mental health issues that follow on from burnout. Sara: The 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 the 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: Lets –I was gonna read 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 experience with Masking So um, Cath’s put, Cath Sawyer’s put : (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! Russell s put: (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) click them together 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 tactile, 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 plastic 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 are 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, 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 know, 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 cause 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& 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 [Name] and I permission to be Autistic. Stimming and embracing true
Autistic self is proven to be 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 have gotten away with it. And they didn t know I was Autistic. (chuckles) And 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 to two NQTs, 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& And 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 my son. 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 anybody. 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 it s 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
to be 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& . [Warning for Audio Sensitivities: TURN DOWN
YOUR VOLUME HERE!!!] 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 some situations where
– 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? I 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 to 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: Sarah Clark 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. Yeah, 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 they re 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: Yeah, sometimes what I ll do is, it
s really strange, my brain will give me a really long complicated sentence to say, to
the viewers whilst I think about, at the same time, where to go next… so it s burnout,
cause you re it s like, this dual, not dual, it s multi-dual, kind of, you re coaching
yourself, constantly I think, especially about when out and about. I think it s Chuck Palahniuk
who said that we have invisible guns to our heads, and what he meant by that is you don
t need someone – by the time you re old and you re saturated in society – 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 ingrained in you so much that even the idea
of doing it is problematic because it s a taboo, it s How is Kieran supposed to, when
he s nervous go down the street and go Ahh, oh oh oh! [shaking arms] I can do it and look,
little Sara–girl! Gender, it s all gendered, gendered politics is Ahh, my god! and people
are like Oh my god, are you okay?! and Oh, she s hysterical! Kieran could probably get
arrested, right?! (Kieran laughs) So like– Kieran: Yea, completely. Sara: With unmasking and with stimming, I
would argue that with guys with 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 co– Perception of you, as a threat, as a monster, as a bad
thing. So we ve had autistic people… there was a 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 officer saw him **TRIGGER WARNINGS, EVERYONE**, it
s not nice* The officer saw him and within 30 seconds had this autistic person pinned
to the ground. And he asked 2 questions: He said 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 then the policeman was like Right, get on the ground! What have you taken? Thought
he was on 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 m gonna be ok, I m gonna be ok so self-comforting,
self-soothing, ok? 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 she s like, 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 Yeah, 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
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 the duty of 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, it s been going on more than that, but. Kieran: This falls back on social responsibility
as well because society has a responsibility to educate itself 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& (chuckles gravely) 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 acceptance 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 to be
able to say to each other, you know I m not going to be me, I m gonna, I m gonna hide
myself, I m gonna protect myself and it s… We shouldn t *have* to protect ourselves.
We shouldn t have to worry about what other people think about us and what the reaction
of people are going to be. None of this should happen. And yes we live in a world where,
you know, this is the world that we live in. We live in the world where people are *scared*
of us to a degree because they don t understand us. And then that s where ABA comes in. I
noticed just on 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, it s, you know–People look to the UK as being one of the forward thinkings
countries in the world about autism, but for every step forward that we take, there s a
separate channel that takes a step backwards because behavioral therapies in the UK are
becoming–it s *rife* with them and they re becoming more and more prevalent. [Sara: It
s PSB, yeah…?] Uh, yea. Positive Behavior Support: PBS And there are so many different
names for it, there s Sunrise, and.. Sara: Oh god, I had an argument with the sunrise
lady, days ago. Kieran: It s behavioral therapy. Sara: She had a stall at an autism acceptance
place! 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– [Warning for Audio Sensitivities: TURN DOWN
YOUR VOLUME HERE!!! At 49:05] Sara: But they get hurt when they hear like
that it they shut down. They re like, What do you mean I m harming you? I was trying
to help! And what we are–We re being autistic, in terms of factual logical not to hurt you,
it does harm us… that that, you know, things like this (annoyed voice) Sunrise Program,
oh my goodness me. But I was going to ask–I was just going to say I was looking at: (turns
to computer) Lee s pointed out here that women aren t immune from police brutality as well&
Daniel Jay [Last Name] was a really sad situation, absolutely. I was pointing out in terms of,
um–men are more susceptible to that in terms of their mortality. I totally agree, and I
ve experienced it myself with security… the ve been constantly called on me in hospital,
purely just for being autistic. And in pain. And they said, Well, you must ve done something!
This [finger movements] 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, 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 and that you re sorry. They will call
you rude and aggressive and it s, it s scary. It can be scary. And, sorry to sound, if that
sounds negative. I m paranoid about sounding negative but, it s just .. you know, it happens. [Warning for Audio Sensitivities: TURN DOWN
YOUR VOLUME HERE!!! At 49:05] Sara: Well then I was gonna say, ehm, Christa?
Was there anything you wanted to add in terms of what went AHHHHH, AHHHH!!!! (*others laughing*) Sara (off camera): BEEEEEE!!!! Hannah: I like how we re all laughing. We
re not like Oh my goodness! We re like Haha! Kieran: (chuckling) Oh my god, it s like,
We can t rush to her rescue though. Christa: (laughing) Yeah, there s nothing
we can do. Sara: Oh whyyyyy! What s that feeling?! Hannah: I think I saw it on her screen, I
was just like [frightened face] Christa: Yeah, I saw it. Hannah: I think it s gone. Kieran: So Christa, is there anything you
wanna add? (laughs) Christa: 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 Dalek 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 I d be like ahhH!! I won t kill it, I would
just scream throughout the whole ordeal. That s a fly, that s fine. Can you close that [to
Julian]? Thank you. People are like Sara, she s so brave! *laughing*. Can I just apologize
for that auditory overload? I hate when I overload so many people. I m so sorry – the
screaming is such a it s such an instinctive reaction. Anyway, Christa, was there anything
you wanted to add? Cuz I m gonna start rounding it–wrapping it up now. But I have really
enjoyed this. I was really nervous– bees made me nervous, but I think that – 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 buzzing, ah ha ha ha bzzzz You blocky bastard 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 [noises/hand movements] you know we weren
t stimming as much, and it s because I managed to go [nosie/hand movements] and regulate
and calm down. And t was just nice! It s nice to be able to talk in front of 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
was like 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. *laughing* Sara: You re giving me way too much credit,
you re giving me 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. Yea I mean, Christa
you do Neurodivergent Rebel don t you my love, and you do 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. You know, the best way
I think is for us to be so 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] *laughing* 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 right? Kieran: Just to echo what the others are saying.
Firstly, yes, thank you, for doing this quite for you Christa as well. And Hannah, and I
wouldn t be doing this if it wasn t for you either so this is, I just hope we can make
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 I think, 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, 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. [Looking at comments] Echo echo echo, people are saying! Thanks guys, this is a
great live video. Thank you from Lisa [last name] Thanks to Dylan [name] that s [???] Michael
Morford. Thanks to Amanda Briggs, I think that s the FIGS lady? Kieran: It is yea Sara: Awesome. Our number one Callum. You
re coming up with some words I m going to keep forever [silly voice]! Stimpeccable [silly
voice] Yes, what was the other one? I m stimfab- Uh..our number one fan Callum, You re coming
up with some words I m going to use forever! Hannah: Flappulous! Kieran: Flappulous! Yea, that was it, uh-huh. Hannah: That was it, flappulous Sara: Flappulous, or stim-flappulous or something
like that. Yea flapplause [hand movements]. What was that, Callum, you need to make me
a document with stimmy words [silly voice]! And stimmy tic words [???] and then like put
them out in the live chat. Where d it go? There it is, Stimpeccable[silly voice]! Yes.
Gonna have that one now. Funstims! That s a thing I do. That s what Katherine Erebus
said Four hugs from John Greally [hug motion silly voice]. I don t know what that was [puts
on hat]. Hannah: Did you feel it John, did you feel
it? Kieran: [laughing] She s got the fez! Sara: [makes impression of Dr. Who] I m not,
you know, what s Dr. Who? Doctor what? Doctor who?! I thought I was Doctor What! I love
Doctor Who, of course. [Takes off hat]. I mean come on if there s anyone more alien,
if there 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 is having to basically be the actor has to think right. I m an alien, and
I m an alien who has to try and act human, so I m trying to do it, and I m [echoing them?],
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! Like, that s not. Out of all the people that I identify
with, the strongest bond is this alien? Ok. That s before I knew I was autistic. And now
when I meet so many autistic people I m like Whoovian Whoovian Whoovian Whoovian, yea Whoovian?
yeah ok that s cool so we instinctively are drawn to each others personalities and our
tribes, and that is what s quite nice. If you do feel alone, really look around you,
Look at who s gravitated in your lives, look at who you ve let in, 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 books or text, you do find yourself, through
it all, through masking and through all that, the suppression of yourself, you do 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 then now the both of us, to 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. It s really weird that like, both of us were so close and we both
find out that we re autistic. Sara: Yes, well, one of my best mates is autistic,
and she has EDS, and we were both diagnosed in our mid-20s so come on. The best friend
out of everyone, it s like I ll have you! Yea, both autistic both falling out of our
joints it s like, what s up?! How did we know 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 and going I ve not even read all your book, I m sorry! cause my reading
is terrible. I can t read books. I m really bad. So yea, anyway, I m a bad host because
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 who
watched this unengaged, uninterested – it s not easy sometimes putting 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. Hannah: Instagram! Kieran: 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 got that hashtag on it will
come up, so anybody can follow it and anybody can join in and take part and talk about them,
and 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], as well, it s so nice! So yea thank you so
much! I m going to go and have some lunch I think after this, I ve not eaten today,
[mumbling] & nattering, cause now I m like [sings with hand movements]. Yea, that s what
I m like. Buh-bye everyone, thank you for watching!

15 thoughts on “#TakeTheMaskOff Live Launch with Do I Look Autistic Yet, Agony Autie and Neurodivergent Rebel

  1. I had given up looking around the web for written information on "Autistic Burnout" but after watching this video and hearing it mentioned, I looked again and I found and read Kieren's article on it. Sorry if I spelled your name wrong, I'm horrible and can't see it as I type.

    The work is solid gold, not to diminish Judy Endow , Ryan B and others, but man you totally nailed every piece of the puzzle (at least for me). It answered so many questions I had. It explained my childhood not being diagnosed. Tickling for me was like getting whipped with chains. But I wasn't allowed to defend myself. I was told I was normal, but defiant. (Didn't help I was born blue and attacked by 2 dogs at 3, 2200 stitches). I have an appointment with a doctor here in october, and I will be giving him the article. I think the other YouTube advocates here should spread the word and everyone do an expose' on it.

    Bravo everyone. People like you have kept my marriage together (giving us hope). If ever I get my abilities back, I may join the crowd, but for now I'm just learning what I can when I can and wouldnt have anything available if it weren't for the advocates in the community.

  2. Don't let Applied Behavior Analysis (ABA) force you to mask your beautiful unique autism! Be yourself. Get ready for fun and freedom. Take the mask off, friends from all over the world. The ABA men have different appearances. But look at the women on Facebook. ABA calls us "deviants." This sets us free from guilt as we pronounce" "ABA clones. How boring!"

    (Google Scholar this: "Applied Behavior Analysis" and "autism" and "deviance." See for yourself. What "control freaks." Talk about demented!)

    https://www.facebook.com/ABALeaks/

  3. This is extremely helpful. As a teenager I used to worry I had disassociative personality disorder, confused about why I had so many masks and feeling fake or at worse that I was using people, that asking for help when I genuinely needed it was somehow manipulative because no one else seemed to need the same amount of help. Knowing all this now I have more confidence in asserting my needs. I hope more and more people hear this and learn.

  4. A bit late this time, but if I can help out with promoting any future campaigns please let me know πŸ™‚

  5. This is such a great video and it's so important. But one thing bothered me a lot, that Sara talked about NPD as a "bad person" thing? I think personality disorders, especially cluster B diagnoses, are so stigmatized. Please try to be more thoughtful about this in the future

  6. I think when we are diagnosed in adulthood we may have spent a whole lifetime of over analysing ourselves in an attempt to pin down what is different about us – who are we etc. Even with the diagnosis this can lead to over analysing can't it. Sometimes we just have to give ourselves a break, because hyper focus can be a beep

  7. As a recently assessed Asperger's, at the age of 66, this conversation is fascinating. Before assessment, I never suspected that I was on the spectrum, and I was never aware that I was masking throughout my life in order to live what I thought was a 'normal' life. As I learn more about masking (as about many other Asperger's characteristics) more and more of my previous life falls into place. And I find out more and more about the real me, not the masked version. But knowing that I'm on the spectrum means that I am now able to see things from a different perspective. Previously, not knowing anything about the spectrum or being on it meant that I thought that everything I did was 'normal', so there was never any need to question it, even though life was tough at times.

  8. I have autism to I talk to my selfe and cannot deal with atipecals I don't understand the nasty fashion and masking is some thing I have been doing for a long time become I get targeted you all look like me I have a lot of problems

  9. Thank you so much Aunty for making this conversation intersectional, and for bringing up potential issues that stimming while black can bring. I love so much what y'all are doing with this #TakeTheMaskOff series and I would also be so happy if more autistics of colour were welcomed into these conversations. Again, thank y'all so much for this πŸ™πŸΎ.

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