Adulting - #75 Autism and Neuro-diversity with Sarah O’Brien

Episode Date: July 26, 2020

Hey Podulters, I hope you’re well! In this episode I speak to Sarah O’Brien about being autistic, the language around neuro-diversity and why the correct representation is so important. I hope you enjoy! As always please do rate, review and subscribe! O xx Hosted on Acast. See acast.com/privacy for more information.

FanDuel Casino's exclusive live dealer studio has your chance at the number one feeling, winning, which beats even the 27th best feeling, saying I do. Who wants this last parachute? I do. Enjoy the number one feeling, winning, in an exciting live dealer studio, exclusively on FanDuel Casino, where winning is undefeated. 19 plus and physically located in Ontario. Gambling problem?

Call 1-866-531-2600 or visit connectsontario.ca. Please play responsibly. Hi, pod authors. I hope you're well. In this episode, I speak to Sarah O'Brien, who is the participation and policy officer at Ambitious About Autism. They are the national charity for children and young people with autism. So we discuss the language around neurodiversity and why it's so important, as well as when media representation has and hasn't got it right. I really hope you enjoyed the episode. And as always, please do rate, review and subscribe. Bye. hello and welcome to adulting today i'm joined by sarah o'brien hi guys hello thank you so much for joining me i put sarah a bit on the spot she literally tweeted me and then i was like oh my

god i actually really want to speak to you on my podcast which i know is a bit of a an out of the blue things i feel like i've really put you on the spot and make you do this oh it's really weird because like I've been listening to the podcast for so long and have seen so many kind of people I look up to and I'm just like am I worthy of this but that's like a whole imposter syndrome issue of itself oh my god yeah definitely imposter syndrome you're definitely worthy so for people who don't know who you are and haven't stalked you on Twitter like I have, could you tell us a bit about who you are and what you do? I work for an autistic charity, sorry, autism charity. And I also have a couple of chronic conditions. So although that kind of sounds like it might be just a me thing, that's a really kind of autism community thing where everyone is autism and something else. And so I work with autistic children, young people to get their voices heard in all the things they want to do.

And kind of focusing on policy as well so if that kind of makes sense my job title is participation and policy. So at what age did you get diagnosed because I feel like especially in girls autism often isn't diagnosed very early on what was the case for you? Oh completely um so I was diagnosed just after the age of 18 so CAMHS managed to squeeze me in because I'd been on the wait list for so long and that's kind of the norm for girls most likely we're kind of diagnosed as teenagers or adults and then kind of boys are younger and then there's a whole kind of different situation for those who are trans or non-binary so quickly for people who don't know what is it

cams you said is that the child adolescent mental health service so the kind of service that apparently supports mental health as much as they can within the nhs in england and the rest of the uk okay so you kind of like all your parents or you were like i think maybe this what the way that i might be presenting like autism and then you just had to wait to be or was it something else did you have did you did you think that was what it was or um for me and kind of so many others I was having an acute mental health crisis kind of through my teenage years and it was actually the psychiatrist I was seeing who said I think there's something else going on

here other than mental health issues I think it might be autism I'm going to make a referral and then kind of a year and a half later that's when I had the assessment so I had this kind of question for so long of like well this person who's a really kind of like smart medical professional is saying you might be autistic and now I've got to wait so long to find out if that's true and also find out what that might mean for me and this kind of whole pause of identity when you're a teenager of thinking well I know I'm different but now someone's telling me I'm different in a different way in a way that's often quite heavily stigmatized. So how was that how was that for you because obviously I feel like I feel like we've come on

a bit of a way but when you were diagnosed was that something did you feel shame like was it a difficult diagnosis um I think basically because like kind of you're so autistic or stop being autistic like was an insult when I was in school meant because I was still in school at the time when I got the diagnosis it did feel incredibly shameful when I looked at the ways to kind of make myself less autistic and kind of almost remove that from my identity but kind of now I feel so comfortable with it and know that it's not the negative thing that I should be shamed of it has kind of positives for me and of course like negatives which I just kind of manage and cope with but yeah it's definitely something I was so unhappy to kind of find out but then realising how many doors it's unlocked for me which is really weird. Yeah and also I guess it's that

thing which I've spoken about before with disability which is something I'm learning which is you say there's like so many negatives to it but actually maybe those negatives aren't on you they're on the way that society is set up to not support people who are autistic or who think a little bit differently or could could you give a good kind of explanation of what autism is I know there's such a big spectrum and it's so different and everyone there's a myriad of different um kind of expressions of it yeah so um the easiest way to explain it is kind of breaking down the terminology that doctors use so it's kind of described as a neurodevelopmental condition so neuro meaning it's kind of in the brain but really because the brain controls everything it's in every part of someone and developmental because it is there from birth it's just someone else has to kind of identify it

and name it and condition because it's a difference not a disorder disorder or a disease so it's kind of a difference that's present from birth and that is a difference in processing information whether that be kind of the sensory world around us or just kind of how you take in and output information and also differences in how we communicate and socialize so we might be a bit better at things or a bit worse and that's kind of different for everyone and then as I was saying the kind of autism and so everything else you may think of like someone having a learning disability or a learning difference or kind of any physical health condition so it's really prevalent with epilepsy and unfortunately a lot of mental health conditions although those aren't inevitable they just happen because

you're existing in a world that isn't necessarily made for you. This is what I wanted to ask you about, I guess, when you were going through, if you don't mind talking about it, that difficult period with your mental health. And you had this therapist saying to you, maybe this is a little bit deeper. Would you have imagined that had you got that diagnosis earlier on in life and you were able to recognise, as said that it's not a shameful thing at all do you think that you wouldn't perhaps have had those struggles with your mental health where they kind of created they were like a symptom of the world not being set up for you rather than something that happened was always going to happen to you oh my god yes like school would have been so much easier kind of understanding myself would have been so much easier and I would have been given the kind of language to understand myself so much sooner

and without that you kind of are left in the dark and that dark can become a dark place where you do develop mental health conditions as a result of being kind of not told about yourself and not given the space to learn who you are when you're expected to fit a norm or what's kind of described as a norm but it's not your norm yeah and how does that I guess it must be really confusing because as you say like that's your normality to have someone to say to you you're not thinking about this in the way that people expect you to that must be really jarring and like do you feel like you're not thinking about this in the way that people expect you to that must be really jarring and like do you feel like you're constantly having to manage your lived experience and your thoughts and then try and fit them into what you are being taught is how other people would deal

with it yeah like I'm so kind of acutely aware of what the proper way to do something is and then the way that I'm doing it and I think that's something a lot of autistic people kind of hold on to because you're always told that's not how we do things that's not the rule for this place you're kind of always seen as going against a trend but you're doing it to kind of keep yourself safe and also that's just the way your brain works and it might not be the way the world is kind of expecting it to work I guess also like some of the ways that the society set up or some of the things that we think are culturally normal doesn't mean just because they're norm which is such as I don't like that as a word anyway because it's so othering but

um it doesn't mean it's right so it's very interesting that you like use that word proper because that feels so like unfair to say that there's a proper way of doing things because surely even if you're not autistic like we still got such a narrow set of ideals around things could you give an example of something like that was maybe something that you did and then you didn't realize or that you were then kind of told was wrong I think the kind of easiest example is my communication is always seen as so blunt because everyone else seems to enjoy um like small talk and kind of those little niceties whereas I'm much more straight to the point because my brain gets so much more tired in conversations that talking through those niceties is kind of

using that energy I have to socialize so if I kind of get to the point quicker then I've got more energy to process and talk to you but if you're kind of flooding me with the weather and your journey and kind of all of those things it's kind of that idea that um the niceties are the way to get to the deeper conversation but with an autistic person that kind of wall might already be down anyway so you can get to the deeper conversation without having to wade through everything else that's really interesting I don't know if you listened to my episode with Nisha Dolan about her book Exciting Times um I did I love Nisha she's she's amazing and she was saying exactly the same thing I found it so interesting because when I was reading the book one of the things that

I loved was the way that she created these characters and she was saying I actually didn't that's not my lived experience she was like I'd learned people's behaviors from being taught what like kind of some relationships are like and then I I put that but the way she did it was still quite direct and I really like directness because I am someone that loves having quite deep conversations and uh but it's interesting even the ideas of niceties in of itself is kind of pointless as you say like no one really enjoys talking about the weather but it's this kind of thing that you feel like you have to do in order to prove that you've you know given some interest

into things I find that I find it really interesting that that's something that we're expected to do whereas I don't even like it's a learned behavior from everyone I would imagine yeah and it's kind of that idea of having these learned behaviors and like for me social rules are learned even though most social rules are kind of like ridiculous anyway and that's kind of a wider issue that also feeds into mental health of kind of camouflaging and masking autistic behavior so like doing these niceties because you know they're expected of you but at kind of a personal cost it's the same thing of like anyone in a social situation will kind of chameleon to blend into that situation but for an autistic person that kind of might have much more energy expenditure and has been linked to kind of worsened mental health outcomes the reason you tweeted me was about I think my

episode with Florence and you said about I love something like I love listening to people talking about boundaries and really what what you're talking about now is the fact that you know your own mind enough to say that this is the boundary that I want to set and I I need certain things in order to preserve my energy and actually that's a much healthier way of living your life mentally than I guess some of the ways that people who are neurotypical might do because they might over extend themselves because of these societal norms that you've spoken about did you find that but does boundaries feel to you something you naturally do because you're able to be so so direct with the way that you think about things um I think to a kind of certain extent I always

like see myself as an unfortunate yes person because I never want to kind of let people down so it's kind of I'm constantly fighting um self-preservation and kind of providing support and care for others and so it's a very delicate balance I think that's part of the autistic people are viewed as having no empathy when really for a lot of us it's kind of a um what's the word kind of like being hyper empathetic so having so much empathy that you don't know what to do with it and having that kind of save the world complex where you see someone in distress and you want to help them but then having to kind of put in your own boundaries so that you're not the person in distress it's really interesting to talk about it because obviously i feel like we don't because we don't speak about it enough as you say there are just all these like preconceived ideas around what we think autism is and it's really odd

because as you say it's such a big spectrum and everyone is so different with your work you now work within this the minute that you got diagnosed were you like I now want to go into working in an industry that that is also helping people like me or did it completely reshape what your your your ideas were for your future do you think I think so I'd already kind of at that point decided I wanted to do psychology at university because of the kind of mental health aspect and then whilst at university I really stumbled quite heavily and fell straight into disability activism and kind of supporting disabled people kind of of all types and then finding through that kind of more autistic people and then building up this somehow a collection of experience of supporting disabled

people getting kind of work experience in that and then kind of following my passions in involving people in the decisions about them which kind of led through the research I did at university and then somehow ended up here because of the kind of um strengths I have in kind of analytical thought and planning and processing but then also having that kind of inside track on what might best support an autistic person why don't we ask an autistic person and how does it feel because I think Nisha spoke about this as well on Twitter but people you often use language like high functioning or low when talking about autism and that can feel very problematic because again it's trying to bring in this idea that the closer to the line of inverted commas normality you are the the better you are and is that kind has that kind of language been used with you and like how

do you feel about it as you say you champion this idea of being neurodiverse it just means that you're neurologically is that right? Oh I get a little bit lost it's like just the kind of normal difference so like neurodiversity in itself is the spectrum of neurological difference within the whole human community so things like dyslexia dyspraxia adhd and autism would kind of fall into neurodiversity and they're just kind of different ends of how people um may have a brain i imagine that as well with like what we're saying about diagnoses it must be that there are i'm sure are there statistics on how many people probably still wouldn't know that they're they haven't been diagnosed is it quite high numbers do you think I think so we've

had such a kind of like boom in um recognition and diagnosis I would say in the past 10 years since the autism act which is kind of a piece of legislation that raised awareness and kind of put an impetus on there being support for autistic people and i think because there's still a backlog of people getting to know and understand themselves and also just waiting lists are so long that there is a huge amount of the adult population who probably are autistic or have kind of traits and that haven't sought a diagnosis and there are so many children young people who are kind of still waiting years for a diagnosis and i also imagine like with anything else intersection of intersections of privilege are going to impact how quickly you get diagnosed and whether or not you get misdiagnosed I imagine that like socio-economic factors and you brought

up gender briefly before with people that are trans and non-binary that all of those things are going to intersect and maybe impact the way that people are treated within their diagnoses oh a hundred percent it's something the um autistic community has been very reflective on recently kind of in the past couple of years that there is a huge disparity in the diagnoses of kind of white people and people of color with people of color being much more um disadvantaged by the diagnostic process both even in kind of if they get to the point of a diagnostic assessment and the whole journey before that and having to get through the barrier of so many health professionals um for those with lower socioeconomic status there is the kind of barrier of you can't

pay for a private diagnosis which would be so much easier and quicker because those can start getting very easily into the thousands. And then there's kind of the whole process itself is very framed towards the diagnosis of boys and men because the diagnostic materials were validated against boys and men which is why there is the kind of myth and stereotype that um autistic people are generally male i guess that kind of comes back to i'm i'm not sure if you've read it but um invisible women by caroline criado perez yes have you yeah exactly so that gap, I mean, everything is kind of impacted by that. So it's not surprising, but it is, of course, really frustrating when we just don't have the information readily available. a small or insignificant number um and yet to have such low visibility in terms of speaking about it in the media I feel like Greta Thunberg I think that's how you say her name sometimes I say it wrong I feel like actually weirdly she's been such an amazing catalyst for conversation around it but it just seems baffling that there hasn't been more media representation

more conversation um but I think we see that in all realms of disability do you think that do you think that disability and autism are kind of like the last point of intersection that people tend to consider when we have these conversations oh definitely like before um corona kind of autism and neurodiversity were becoming much more spoken about in the sphere of diversity in the workplace. Disability is so broadly forgotten about when we think about diversity, because we always think about homophobia and racism and misogyny but often people forget about ableism and when places say they're fully accessible that means absolutely nothing because that doesn't talk about level access and accessible bathrooms or what the lighting is like

or if it's suitable for an epileptic or if it has um kind of like acoustic dampening or quiet spaces so it's often we think about the needs of others and then forget that anyone can become disabled and so many people are disabled from birth i know that you have accompanying disabilities alongside your autism and i wondered if you could speak on those a bit. So my additional disabilities kind of fit nice and neatly into bendy and tired which means that my joints are hypermobile and I have chronic fatigue and fibromyalgia, which basically means I talk to doctors and they just tell me I'm tired. And I say, no, I'm tired. I'm in pain and things don't often feel right. Which is kind of a very, they're very common diagnoses for autistic people and something that hasn't been researched much recently.

Sorry, much until recently recently which means it's really difficult to find information about things as well and how do you find it I guess because most of those things you are all invisible disabilities I mean how does that impact you as you're like because obviously it's part of your identity is having these I also want to ask you about the word disability and how you feel about that in a minute, but how does that make you feel when you know that, you know, you can operate in life perhaps and people would never look at you and know that you have a disability? And how does that kind of change and frame your perspective? Because I guess it means that you have a slightly different angle as opposed to maybe someone who's a wheelchair user or someone who's visibly disabled

yeah I think as someone whose kind of um disabilities are all viewed as invisible it means that unless I kind of out myself by saying something or showing um a behavior that reflects my disability whether that's kind of um stimming which is kind of like the repetitive movements you might see an autistic person do or um the kind of face of pain I have if I'm made to stand on the tube and my joints don't like it it's kind of yeah it's difficult having kind of conditions that on the outside I look completely fine and for the most part I am fine but there are um flare-ups and more difficult times which mean I always have to over-emphasize how disabled I am to get the support I need.

And how do you feel about the terminology that we use? Because the more and more conversations I have, the more I've started to realize that with anything, that life would be easier for everyone if everything was set up with everyone in mind, rather than the very small demographic of like white cishet men who kind of created the world. So do you feel, do you feel any kind of way about the framing of you being, having a disability rather than the world so do you feel do you feel any kind of way about the framing of you being having a disability rather than the world disabling you is that something that you kind of dislike or you've you've kind of taken it on and and don't mind it I think that's kind of a two-pronged thing of kind of identity and social versus medical model of disability so I definitely like I identify as disabled I found that kind of very

empowering term it feels really weird when someone says like differently abled or see the ability for the disability like you don't have to remind yourself that I'm a whole person just because I'm disabled and different um and the world is definitely a disabled place kind of as the social model of disability says um I don't necessarily feel like identify as disabled but also at the same time feel like society is the disabling aspect to a lot of my um disabilities and so I think it definitely kind of you can have both the identity and feel comfortable in what causes the disability yeah that makes sense and I agree with you it's something that I always used to do which is so bad but you'd be like oh but I can't even think about it with when it comes to ability but it's something I used to do with like fatness so I'd

be like oh you're not fat you're this and it's kind of like why do we why are we so afraid of acknowledging these differences fandu casino daily jackpots guaranteed to hit by 11 p.m with your chance at the number one feeling winning which beats even the 27th best feeling saying i do who wants this last parachute i do daily jackpots a chance to win with every spin and a guaranteed winner by 11 p.m every day 19 plus and physically located in ontario gambling problem call 1-866-531-2600 or visit connectsontario.ca select games only guarantee void of platform or game outages occur guarantee requires play by at least one customer until jackpot is awarded or 11 p.m eastern restrictions apply see full terms at canada.casino.fandu.com Because as you say it, then kind of like dehumanize, it kind of takes it away from you when it's a massive part of like who you are.

And there's like, there's nothing wrong with it. And I feel like it reinforces the idea of shame around disability and makes it seem as though like we can't accept someone else unless we try and find that where they have proximity to us yeah like um it's like when people come up to me and say oh you're so funny like I didn't realize you'd be funny if you're autistic I'm like okay great thanks it's like oh you must be so anxious like talking in front of people you know because your disability means you can't talk to people and it's like well that's not true either it's like people's kind of outside perceptions need to be molded by the person they're talking to rather than the society we're in because the society we're in perpetuates these negative um perceptions and for me i think it's always great to kind of ask the person so like

you asking how if I identify as disabled it's kind of more positive than someone immediately going oh you're not disabled you're just like you've got different abilities it must be a superpower that you have it doesn't really feel like a superpower and I can't get out of bed but that's another thing what do you ever as have you ever seen good media representation of autism I watched um atypical on Netflix which I thought was really good but I'm not someone so I don't it's hard to know whether or not something's a good representation if you're not part of that community is there anything you've watched or seen in mainstream media that you thought was really good? There are a couple of things.

I would say Atypical isn't necessarily the best just because it isn't made with autistic people in the development of it. And the autistic actors that they have in it are in more limited roles roles and so it also relies on a couple more tropes I think it's great for starting a conversation and I like to use it as a kind of conversation starter for how autistic people would be different but some may kind of have similar um behaviors or kind of a presentation to what you see on screen.

For me, the best thing I've seen is Everything's Gonna Be OK, which is a kind of American drama sitcom-y thing, which has much more realistic autistic representation. Also, I know not all autistic people like it but I really enjoy the A Word which is a kind of a BBC production and that's had autistic input and autistic actors and kind of shows a kind of wider variety although it is still heavily white male autistic it kind of shows different ages and autism isn't the focus of that it's kind of a major storyline but it's also the kind of drama that ensues in any family which is often forgotten because most families with a disabled family member and particularly in the school years it kind of becomes a fight where the disability takes the forefront because you've got to fight for someone's

rights for nearly 18 years and finally something that is a bit of a kind of like work plug but also because they're the young people I work with was the documentary are you autistic which was on channel four which kind of discusses some of these um issues of representation and diagnosis and kind of that girls aren't diagnosed diagnosed as often and is led by kind of autistic presenters that's it's really important what you're saying about not having people in the writing room and it's something that i think we've seen speaking a lot especially because of um the black lives matter movement having this amazing moment of action where we're like actually so many things are done in such a

tokenistic way and i think it's the same with anything like if you haven't got people in those writing rooms or you haven't got people behind the scenes like how can you ever really create something with enough truth in it for it to be powerful and you just mentioned I want to watch that show Are You Autistic on channel four but I want to ask about another show but I don't know if it's like triggering it was on channel four do you know what show I'm talking about but will it check if can I ask um do you like the undatables did you ever watch that oh is that it's not triggering I've had um disabled friends who've been asked to be on it and gone no I'm not undatable I've actually got a boyfriend or a girlfriend or a partner I think it's a very awkward framing because someone shouldn't be undateable just because they've got a disability or kind of like difference in how they look or anything like that

I think I can't imagine that it would get commissioned now especially not with that title but I think that there were if I can recall correctly there were quite a few people who had autism on the show and I feel like that was really damaging framing as you just said because it it made this kind of even though everyone kind of loved the people on the show it kind of cartoon it made it into a it was very othering and I think what we don't see enough of is like we that we will all probably know people or meet people who are autistic and and that's kind of the normal life interaction rather than turning it into this kind of like gamified idea of these other people and I think that that's what so often

as society we do and I guess that that would be like a really bad example of when media representation tries to do something like I think it really thought it did something and actually it was just quite damaging yeah like it kind of instead of having a kind of nice and reflective open conversation about what you can do to support someone and the kind of challenges they may face it does turn into this almost like pity party of like well they're on this show because they're undateable but look they get to go on a date and that's just not how anyone should be viewed it kind of lowers our thought process and kind of standard of thinking about a certain type of person and yeah it is incredibly incredibly othering and forgets the fact that there are so many autistic people although many may struggle with friendships and relationships

but like there are so many people who do struggle with friendships and relationships who aren't autistic. There are those who have really rich and fulfilling friendships and long term relationships and kind of marriages and families. And a program like that does just kind of like wash away all of that almost instantly. Now, like in your work, and I guess you're constantly surrounded with people who do it do you say this is another thing I want to ask you because I always get caught up in this because Nisha Dolan said she treats the southern and I was like oh that's really interesting she was like I don't like this whole person first thing she was like I am autistic that's kind of what I want you to say I kind of never know whether you're supposed to say like person with autism or autistic person or is it that always just person dependent on who you're speaking to so there's been kind of research within the community um the preference

is generally autistic person because person with um the defense of person with is like oh you've got to remember there's like the person behind the disability and it's like you shouldn't have to remember I'm a person and just because you see my disability and it also kind of helps to kind of think about well like I'm not a person with autism because it's not something I like carry with me and can put down and kind of segregate from my life it's embedded in every aspect of my life and for some people that is a kind of really contentious identity issue where they have to be seen as the person they are an autistic person and then there are others who may use kind of like either term because they don't have the same relationship with the language and so they don't mind what's used and then often it's something that professionals are kind of taught to you so

professionals are taught person with because that is the kind of like medicalization it's like you don't say cancerific person you say person with cancer although like autism is nowhere near cancer yeah completely no I get what you're saying that's really it's interesting with those things because I think for me I was gonna ask something else but I've forgotten for me I think this is where people get really caught up in having these conversations because they get so afraid of being like oh I'm gonna say it the wrong way around whereas I've always found in any any conversation I have just you can ask and it's the question in of itself I don't think it's insulting it's it's as long as you're like

open to learning I think I think what stops us having these conversations around autism or any other thing which quite frankly is still viewed as like taboo I think people really do see it in that way um I think that this idea of using oh I don't know what how to say the right thing it ends up being like a barrier and being able to actually open up the conversation is that something you face in in your work with people sort of being unwilling to they don't want to talk about it so they use kind of identity politics and and political correctness as a means to saying they can't engage with it. Yeah, you get people who are so scared of kind of opening the door to that conversation that they shut the door to every other conversation,

which obviously is quite rubbish because you've got people who are so willing to kind of add to what you have and kind of support you to learn. So a lot of what my team does is kind of consultancy where we put autistic young people in the conversation at the very forefront and they're more than willing to kind of challenge anyone who has ableist beliefs or doesn't want to push them far enough or ask them to be involved enough um yeah do you think that social media has been a positive attribute in in your work and do you think that it's like in terms of meeting people and elevating the conversation do you think it's been a an overall positive thing or a bit of a

mixed bag um I think it's kind of created a community that we wouldn't have had decades ago. So people able to, because you're less likely to see an autistic person day to day because like we are in minority, we're able to reach each other across the world and across countries. And so I think that's definitely been a positive. But I think there are a lot of kind of negatives attached with it that may not be seen so they're kind of having a different way of thinking can make someone a little bit more vulnerable to being taken advantage of even like in person or online and so it's kind of as with anything there are positives to it of kind of finding your tribe and finding people like you but also that social media has made everyone kind of open to praise

and criticism 24 7 and that can be really difficult if you're unable to escape it with with having that community when when you were diagnosed was there anyone else that you knew like what was the actual initial process of is there any kind of like do they do you get introduced to other people so that or is it quite a lonely experience like what is that the actual kind of because I can imagine as you said like it is really hard because unfortunately we aren't educated more broadly on what autism actually is and there is these this stigma from media representation and lack thereof when was it that you found that community that you just spoke about and and how much of a difference does that make for you um so in terms of kind of like what you get afterwards um you finish your assessment and then for me it was six weeks

later I got something in the post and it was a 12 page document of what had happened in the assessment what they'd written up very negatively written basically saying I wouldn't have the greatest success at life and here are all the things you did really rubbish in three hours I saw you and nothing to kind of signpost to services or ways to meet other people that's kind of all on yourself to find and I knew there were autistic people at my school but they were also so heavily bullied that it was kind of um what's it called image management where I didn't want to associate with them and start talking to them about this because I didn't want to associate with them and start talking to them about this because I didn't want to open myself up to more bullying but then the thing that I found really freeing and it's so 2014 is um the kind of actually autistic community on

tumblr yeah that's kind of where I found myself and saw myself represented in a way where I was like oh my god this is me for the first time and I think having that kind of tangentially through my kind of growing this identity and it moving across different platforms and finally meeting people in real life has really helped but it wasn't something that was on offer I had to kind of fight and carve and look out for it myself I'm so sorry that your experience was so negative after that just sounds awful that the framing is so bad because as you say again it goes back to the same idea of this comparison towards this absolutely fabricated norm that we've created is that something that's changing in terms of the medicalized language around it

or is that something that still needs to be lobbied for i think it definitely like it's working its way to kind of um being changed and i think it's taking its time like when I was at university I saw the difference between it being called um by our lecturers um autism spectrum disorder to autism spectrum condition and some of them were really kind of strong on that point and that was the kind of strength that I really enjoyed seeing seeing people kind of fight for what language means i think there is such a way to go that we're not sure um yet what the future will look like because it is so kind of like far off and distant um it is just people fighting and correcting and learning and growing that we need to kind of rely on and it would seem um i mean children are awful anyway and they always will pick on people who they perceive them to be

different but to be to be bullied in that situation is is so devastating and then to know that you like you said image management to even have to be thinking about that when you're at school is is really sad and is is it something that is being spoken about more in schools it's definitely something I wasn't educated on I don't even know if I knew the term until I was a bit older really that's yeah I think the only time kind of I heard it was definitely um it was an insult and like that's the only frame of reference I had. I had It's an Insult and kind of like Rain Man and then kind of Sheldon Cooper. So it was the idea that like, it's definitely not me because like, it's this bad thing. It's only white men who are really into science.

And like, I'm a little bit into science, but like not that hardcore. I wouldn't die for science I I'd read it where where do you see like with all your work that you're doing what's your kind of your main target that you're working towards at the minute and like your your biggest goal that you think will have the biggest change um because I guess the people that need to be really doing the work are people who are. What do I, is, do you think that neurotypical is not that great? Because it's, it again has the word typical in it. I always, because like neurodiversity is so vast, like for clarity, whenever I'm kind of talking about it, I say like non-autistic. Because I don't know that other like personal groups experience so I don't know if they could have conditions so I don't really find myself using like I use neurodiverse a lot but

I don't use neurotypical but for me that's kind of a personal preference plus like the idea of typical like what is typical no exactly that's why because I have used it before and actually once literally when I said it just then I suddenly realized like in the conversation I'm having about normal and vertical and stuff that's exactly the same it's just a synonym for normal isn't it so I'm going to adopt to not use that as well so it's it's predominantly the work that needs to be done is by non-autistic people who need to one become more educated and also I guess learn to facilitate ways that with any disability we can make things more inclusive is that kind of the end the end goal yeah and that's the kind of stuff where um like at work

we're working on at the moment so we're with autistic young people developing training for kind of any professional on recognizing what autism is and kind of how to support mental health to make sure that poor mental health is not an inevitability and also thinking about um like post-diagnostic support what people who are autistic should know and what their kind of non-autistic peers should know to kind of make the world a much more kind of friendly place and some of my favorite projects although they're on a corona hold is working with kind of museums culture and heritage sites to make them a place where like we can actually go into and enjoy rather than everything being overwhelming. So what kind of actual physical or like infrastructural things would have to happen in those spaces for them,

for you to feel like it would be, you know, as you say, like safe rather than overwhelming? And so lots of kind of museums, cinemas and galleries of anything that's kind of a public space they're doing they normally do um quiet hours or create additional resources that are great for autistic people but also anyone who's kind of anxious about going somewhere or likes to plan to the kind of absolute end of what they're doing so there's um visual stories which kind of are the visuals of the information you need to know and making it really clear and easy to know where to find information so like every time i go to the royal academy i always forget which entrance to come out of piccadilly circus because there are seven exits and so i get lost somewhere in the middle of Piccadilly Circus and kind of thinking about

the ways you can make your information as accessible as possible so I'm always kind of conscious of the fact I work with autistic people and about 50% of the people I work with have a learning disability so my communication has to be as simple and as clear as possible and kind of fit in as many reasonable adjustments into how I kind of communicate with them as possible which is difficult but a learned experience. Yeah and I saw you tweeted the other day um if your video doesn't have subtitles on it it's not finished and I think this is like one thing we are seeing I subtitled all my stories on Instagram I really need to start doing my my actual videos and it's just

something I hadn't really thought about now I do it I have so many people messaging me either they're hard of hearing they're actually deaf or they have some other reason why they can't they need the words and I was like god I hadn't even thought about that what what a huge oversight hard of hearing they're actually deaf or they have some other reason why they can't they need the words and I was like god I hadn't even thought about that what a huge oversight yeah because it's one of those things where like it's an access accommodation for one person but also it's like it's good business sense because there are so many people who watch videos with sound off on social media so you're engaging a higher audience if they can just read your content yeah completely and also it was really funny because other people

were like oh this is so great you're doing this now because I always want to watch your stories but I'm in work and I'd be like well maybe that's why maybe you shouldn't be watching them when you're in work they've like can't can't watch one now because my manager tells me off and I'm like well I don't think that's my fault do you save them till you get home um is there anything else that I haven't asked you about I feel like I'd love to hear anything else from you I'm worried that I'm not asking you good questions I think you've kind of it's been a very um like nice little introduction for people to autism I think it's very difficult for me to think about um what an introduction is because it is my 24-7 both like personal and professionally which means it is more than my 24-7 um I think if I had kind of any closing kind of conclusions it would be as you said ask someone

if you're unsure that's never the wrong thing to do it's always better to ask rather than get something wrong and kind of check on what you're reading if you're trying to find out about a disability because although it may seem great coming from like a medical organization because that will have medical facts you'll be missing out on the personal experiences which kind of bring those medical facts to life and every autistic person is so uniquely and completely different just like everyone is so you shouldn't kind of blanket apply the same approach you should um just kind of be a nice person and kind of treat them nicely yeah completely and it's been honestly it's been such an honor to speak to you I've loved this conversation I feel like I've learned loads if anyone wants to engage more with your work would

you have any places that you would actually point people to learn more and they can write down I've written down those shows that you mentioned earlier but was there anything else that you think you'd like to point people in the direction of um I think for me the kind of best place is probably asking autistic people on twitter um you can always kind of look at the websites of national charities but kind of take it with a grain of salt as to whether that is written that content is written by an autistic person um yeah just kind of engaging through social media because there are so many kind of social media influencers or like micro influencers I don't know what the terms are that are autistic or disabled and like if you are looking to diversify your feed, then don't forget about disability as an aspect of diversity.

Yeah, I think that's such a great point. Oh, well, thank you so much, Sarah, for joining me. I've absolutely loved talking to you. And then if people, do you want people to follow you on Twitter? I mean, they can if they want to. It's generally some, like, I have a lot of nurses who follow me there now it's really weird um just because of our like work in healthcare and if you want to follow me on twitter it's mainly groaning about being chronically tired and um kind of stuff I do

which is really exciting with autistic young people and that is sarah marie ob amazing well thank you so much sarah for joining me and thank you everyone for listening i will see you next week bye bye We'll be right back. to win with every spin and a guaranteed winner by 11 p.m. every day. 19 plus and physically located in Ontario. Gambling problem? Call 1-866-531-2600 or visit connectsontario.ca. Select games only. Guarantee void if platform or game outages occur. Guarantee requires play by at least one customer until jackpot is awarded or 11 p.m. Eastern. Research and supply. See full terms at canada.casino.fandu.com. Please play responsibly.