Hi guys…
Audible Autism is BACK!
We’re very excited to say that we have been working on a new season of Audible Autism, and we’ve got a whole new set of episodes for you on interesting questions, with interesting facts, and interesting guests. Subscribe so you don’t miss anything!
In this special episode of Audible Autism, Heather interviews Sarah McCulloch and her vision for the Autistic Empire, our new autistic community.
Sarah discusses:
* Her views of autism as a civic identity.
* What the Autistic Empire has been inspired by from Malcolm X and LGBT liberation movements.
* Her own background and journey as an autistic person.
* How she sees our future as autistic people.
The transcript to this episode is available at the bottom of this post.
Heather is a writer, blogger, ancient historian, mythologist, anthropologist, crafter, graphic designer, and web designer, all of which are special interests and learned on her own time. She has bachelor’s in philosophy and master’s degree in international affairs, but previously worked in human services and journalism for a local paper. Currently, she is helping care for her mother after two strokes. She currently blogs about her experiences being Autistic and Autism related news at http://ontheaspieside.com.
If you would like to be on an episode of Audible Autism, please fill out our form here, and we’d love to chat with you.
TRANSCRIPT
Transcribed by: Elly Badcock
Odai: Hello everybody, this is Odai speaking and for this episode you’ll get something different and what I think is quite special. This time it will be our host Sarah who is the interview subject and she will be interviewed by noted journalist on all subjects pertaining to autism, Heather. I think this is going to be a very interesting episode. It’s something that lays out Sarah’s vision in regards to the Autistic Empire and her beliefs, and it’s something that I think you lot will all find very interesting and entertaining. Enjoy!
Sarah: Well first of all I need everyone to join the Empire.
[Laughter]
Heather: Okay so marketing campaign.
[Introductory theme plays as follows. Tap on microphone. Male voice says ‘testing, testing’. Tap on microphone. Can you hear me? This is Audible Autism. Theme music plays – an edited version of the music accompanying The Video Collection ident].
Heather: Welcome to another edition of Audible Autism. My name is Heather, I’m host of a blog called On The Aspie Side. Today I’m guest-hosting this important episode to interview co-host of Audible Autism and founder of Autistic Empire – please welcome the Reverend Sarah McCulloch. Thank you for your time today.
Sarah: Thanks for having me on.
Heather: How are you doing today?
Sarah: I’m good. I’m wearing a sweater vest and how could it not be a good day?
Heather: That’s a very good day. So please do tell me a little bit about the Empire and we’ll go from there.
Sarah: Audible Autism is an autonomous project within the Autistic Empire, which is an organization that has been several years in the making but was formally launched in September 2018, the goal of which is to give a place to autistic adults to see their autism as an identity. As civic identity that makes them part of a people, and not that there’s something disordered or wrong or immature about us. The reason we went down this road is because a lot of advocacy organisations for autistic people were set up by parents, which means that they come from a particular perspective. It means that they often focus exclusively on children. It means in many places autism is seen purely as something that is a disabling factor in someone’s lives rather than necessarily the neuroatypicality that many of us know it to be. So they focus very much on the negatives and calling for support for autistic people, and certainly in your country calling for a cure although that’s much less of a focus in the UK. Our main organization is National Autistic Society who do do quite good work to support autistic people, but it’s still from the perspective of the idea that there is something ‘other’, different, with the implication that that means lesser or inferior. And what I wanted to do is let’s say ‘let’s not talk about being different, let’s talk about being’. To say ‘there’s nothing wrong with autism, we’re just different’ is still centering the lived experience of neurotypical people and so what I wanted to do is say ‘let’s build a community of people where we all just are, where autism is the majority, where our behaviours are the normal behaviours’ and that gives us the space to breathe and to take a more practical approach to how we live our lives. And we launched a couple of months ago, we’re still figuring out ins and outs of our website – had to change quite a few things – but we are starting to slowly build tools and gather interest, and we’re looking forward to getting in touch with other organisations that are run by autistic adults and seeing how we can work together.
Heather: So tell me about the social portion of the organisation, I’m curious about the Empire – what exactly the goals are, where you see it going and how you would like it interacting with the outside world in essence? You know, okay so we have a conversation with each other but where does it go? What’s the ultimate goal there, and I guess we’ll go from there [laughs].
Sarah: Well I was originally sitting down to work out ‘what is the Autistic Empire?’. It was originally created when I came up with the idea for the logo, and then I spent the next two years thinking ‘yes but what does that mean?’.
[Heather laughs]
Sarah: And so when I originally sat down to think about ‘if I were going to build an autistic organization for autistic adults that was functional and practically focused, what would I want to build that on?’. I came up with ones that I think, you know, a lot of autistic advocacy organisations would agree with – that it’s an ordinary variant of human neurology, that we don’t want a cure, that it’s not inherently a disability although for some people it is. I also wanted to counter against what is a widespread attitude among a lot of autistic people, that you have to accept them just as they are and that it doesn’t matter how rude someone is, that’s just a feature of their autism and you can’t blame them for that. I wanted to push back against that because if someone’s rude to you, someone’s rude to you, and I don’t think that autistic people should get a free pass in the society to completely ignore all social norms and their responsibility to engage in social relationships with others in a way that is considered and polite.
Heather: So related to that specifically, if someone is unintentionally rude to another person and the person – they have a responsibility I think to apologise, but can we be held accountable for behaviour that we don’t know that we do? Or is it something that – if I do something, how do I respond to it? Is it more like if someone tells you you’ve been rude then you have a responsibility to learn how to reply in a way that’s respectful and so on and so forth? I mean is it reasonable to assume that someone can overcome something that’s neurologically not there?
Sarah: The fifth principle is ‘autism does not excuse us from civility or personal development’, and what I mean by that is if someone says that you were rude to them, not that actually you should accept what they said but that you should reflect. And I think that it’s a problem within relationships between individuals at the moment anyway, that people don’t do enough to think about the impact that they’re having on others, and I don’t think that that’s an autistic thing – I think that’s the reality of how our society functions at the moment. I think that being autistic means that it is going to be harder for you to read a room, absolutely, that is undoubtedly the case. But I also think that as an autistic adult you should engage in a process of self-reflection and growth, the same way that I think non-autistic people should do so as well. I absolutely understand that a lot of autistic people struggle with that, but that’s why it makes it more imperative in order to try and work out why that isn’t working. I’m absolutely not wanting to undermine the reality that we all really struggle with social skills, that emotional development is something that is several years forward over non-autistic people – I always say if everyone consistently fails their developmental milestones, then maybe autistic developmental milestones are just different to neurotypical ones in that we talk later, we have our first relationships later, takes a much longer time for us to mature as people because of the reasons that we’re autistic. But we aren’t excused from that process – the whole point of the fifth principle is to try and push back against the arguments of some of the people that I’ve met that ‘they’re just autistic and they’re just allowed to be obnoxious and take over other people’s space and talk over them’. And actually one, that’s just going to alienate you from people and no-one is obliged to hang out with you if you’re alienating, and two, that argument is very often put forward by white straight cis men and is problematic for all of the reasons that we understand that to be problematic. And so I just wanted to make sure that that was there as a principle by which we make it clear that we are not simply autistic supremacists saying ‘everything’s fine’, because everything isn’t fine. We’ve got work to do.
Heather: Could you talk a bit more about how societies disable us? Because I think that’s also the flip side of that, you know in some ways we need to learn how to be civil within the society that we have but also the flip side of that is how societies are disabling us and also how they can work to be the other way? Just real quick, and then I really want to get into the community, but please elaborate on that because both of those are very good topics.
Sarah: I think the most obvious one that’s coming to mind is that – I’m an Occupational Therapist by trade, and a couple of years ago I went to the Royal College of Occupational Therapist’s Annual Conference. For one of the sessions, it was held in this particular brightly-lit meeting room where we had to break down into little groups to have a discussion on a particular topic. I went into that room and sat down and the lighting was so bad I was effectively struck blind for 45 minutes. I’ve never experienced anything like that before in my life, I’ve never gone into a room and literally been unable to see because of the way they’d organised the strip lighting, but it happened to me in that event. I think that there are many examples of pure environment that don’t work for autistic people that could be easily fixed if it was known about, but in many many cases isn’t known about because neurotypical society just isn’t aware of it. Obviously countries are making huge strides towards dialogue and inclusivity and access, not just for autistic people but for various disabilities and impairments, but there are still so many ways in which autistic people are finding it very very difficult to get through life. I know that a lot of autistic people really struggle with job application processes for example. You give them a job and they can do that job, but you tell them that they have to go through this process of finding a job, and filling out this form and sending it off, and then impressing at interview and that kind of thing – it’s all hugely wasteful and inefficient when you know that if you’re just given the job you would kill at it. There’s a bunch of things like that there are just very, very unhelpful. The one that I would like to say in this interview that I very recently realised is that a lot of autistic people do not drink hot drinks, they don’t seem to like it. I’m not quite sure why it happens but we’ve had that realisation over a lot of the people that work in the Empire, everyone systematically boycotts tea and coffee. Now I don’t know how it works in the U.S. but in the U.K. if you go to any kind of refreshment stand at an event or in your workplace, the options you get are tea, coffee or water.
Heather: Right. It’s not too different here.
Sarah: Exactly. If you have a choice of tea, coffee or water a lot of people will choose not to drink anything. What I do is actually take squash to all of my workplaces and dilute water, so I don’t have to drink constant hot drinks when I don’t really want to. But that was an example that I discovered very recently of ways in which society just does very subtly make it difficult to be autistic, even when that’s not intended and even where it’s not really an access issue as such. Because it results in autistic people not drinking enough, and if it results in autistic people not drinking enough then it results in autistic people becoming dehydrated, becoming irritable and the rest is history.
Heather: And then not being able to manage emotions or anything else. But also I have anxiety in addition to being autistic and tea doesn’t bother me so much but coffee will ramp up my anxiety tremendously. So if the options are water and coffee, I will pick water. I at least will pick something but I can definitely understand why someone who is in that situation wouldn’t know what to do because if you don’t like really cold drinks and you don’t like hot drinks, you’re kind of stuck. Maybe put the water on the desk for a while but then that’s basically all you’ve got.
Sarah: Exactly, there’s just no options on the table for a lot of Aspies.
Heather: So how do autistic people answer questions about how to deal with neurotypical people when we’re not neurotypical? I get from your education and your work that you would be uniquely able to do that, but I would wonder how someone who is not an Occupational Therapist or a psychologist or trained in a classical sense would be able to describe to another Aspie how you deal with neurotypicals in situations that for them is a piece of cake? You know, in this situation you keep your head down and your mouth shut, in this case you have to say this nice thing and that will make them go away and whatever, how do you know what to say? That’s an interesting premise, how do we help each other when we’re trying to deal with a language that’s not ours? [Laughter].
Sarah: Yeah. So I guess there’s two points to be made there – one is that this is why we need to have everyone in the community involved. Because there are things that I can do as an Aspie that other people can’t do, there are things that I can’t do which I have to have explained to me by other people, and by utilising everyone rather than just a small sliver of the community who’ve been picked up by services, who’ve been told that they’re autistic and they’re the real validated ones, if we actually bring everyone in we’ll be able to compile those answers a lot better. The second point to make is that a lot of the reasons that autistic people have difficulties with things is that they haven’t had as many opportunities to fail as neurotypical people have. So a lot of people develop the art of conversation by just embarrassing themselves a great deal, and I think there’s something – I mean don’t quote me about this, I’m sure there’s actually been research done on this – but the way I understand it is that because autistic people develop later, their language skills and their emotional skills come later, it means that by the time they go into school and start interacting with other children everyone else has kind of already done the beginning parts of language and intersocial communication, and they’re just better at it. And autistic people, being quite anxious, don’t want to be constantly trying to keep up and so a barrier develops very very early on, where we don’t get the opportunity to practice our social skills and language skills in the way that neurotypical children do. And that barrier just gets bigger over time until eventually people are just like ‘how do I have a relationship?’ and no-one knows the answer. I find it absolutely extraordinary really that I meet all these autistic people who are like ‘I have failed at life’, and I’m like ‘given what you were up against, what you have achieved is remarkable’. I say that to people so many times, because obviously the number one problem is poor self-esteem and I’m like ‘no, you managed to get a degree, you spent your entire life attempting to be someone you’re not and you got this far, you should be proud of yourself’.
Heather: I think that’s beautiful, and I think that’s something a lot of people need to hear.
[Ambient music plays. Sarah is speaking over the top of it as follows. Hello, welcome to this conveniently timed commercial break. Did you know the Autistic Empire has a shop? We sell autistic-themed merchandise, products by autistic artists, and useful things we think you’ll find cool. Have you got difficulty getting your shoelaces to stay tied? Buy our one-tie shoelaces from Greepers that you can loosen and tighten without ever having to tie them again. Are you concerned about one-use straws but still want something to sip with? We have reusable straws from GlugGlug on sale now. T-shirts, badges, mugs, we’ve got it all and it’s all for autistic people by autistic people. All of our profits go towards employing Aspies and supporting the work of the Empire. We’re a work-in-progress, so if you have feedback or would like to stock your products in our shop please email sales@autisticempire.com. Everyone else, the address is shop.autisticempire.com. That’s shop.autisticempire.com. We’ll let you go back to the episode now. Thanks for listening.]
Heather: So tell me a bit about yourself.
Sarah: I am from the UK, I was born in London, I went to university in Manchester to study Theology. I realised that I was autistic at the age of nineteen and spent the best part of four years trying to get a diagnosis. We finally went private at the age of twenty-three and I was able to access decent support in my final year at university, but that experience was very difficult for me and so at the end of it I didn’t want anyone else to go through that. So I had plans to become a digital marketer and I’ve got a postgrad qualification in that, but I ultimately decided that I wanted to go off and do something for the benefit of autistic adults and so I asked myself ‘what can I do that would allow me to work in that field?’ and remembered that I’d been given an assessment at the age of sixteen by an Occupational Therapist called Jill Christmas, so she was very easy to track down. I discovered she was an OT, I looked up becoming an OT and went off and did the training myself. So I now work as a mental health Occupational Therapist in multiple services across London, and in my spare time run the Autistic Empire.
Heather: How did you know what autism was when you were looking into that when you were young, and that you would fit that criteria? How did you learn about it?
Sarah: So it turned out that my school knew, but they just never told me or my parents. We found out when I was sixteen, there was a change in the law that meant that people who were in Year 11, I’m not quite sure what grade that is in America, don’t automatically go into Year 12 or sixth-form if their school had one. They had to meet the same criteria as anyone from a different school applying to that sixth-form had to meet. My school for some reason – well, I know why they did it – they decided to set the boundaries quite high because I went to a school for academically gifted people. So they told everyone that they had to get a B in GCSE and I was not able to do this, I have a real problem with maths. At the time my mock exams were showing me scraping Cs and so my mother said it was extremely unfair, given that I was taking entirely art subjects, that I should have to achieve a higher score in a maths subject in order to continue at the school that I’d been at for five years. She wrote to the local MP who objected to this system, and he sent a copy of my mum’s letter directly to the school who sent a very angry letter back basically saying that I obviously had Asperger’s and it wasn’t their problem –
Heather: That’s crummy.
Sarah: – and it was completely fair to insist that everyone get a B in GCSE maths and that if I couldn’t do it then that was really my problem and not to do with them.
Heather: That’s horrible.
Sarah: And the MP sent this letter straight to my mother, so we found out that my school thought this but it didn’t really mean anything. I think actually a lot of people that I’ve told ‘you’re autistic, you’re telling me there’s this particular thing that’s wrong with your life and I’m telling you this is why it is’, it bounces off because people don’t really have any frame of reference for what it means. And I guess now that I’m saying this story to you, that’s exactly what happened to me and my mother – we had no real idea what that means. I knew that something was wrong because I was having all of the social problems that sixteen-year-old Aspies do, but I could not relate what I was experiencing to what had appeared in this letter, so we just kind of forgot about it for several years. So that’s how we obtained a piece of paper that indicated what was up but it didn’t really go in. I left home to go to my gap year at the University of Bradford where I was working as a disability support worker, and I had some flatmates and one day one of them came home drunk and started to berate me at 2am about how I had insulted him by saying that my friend was much better than him at squash. I did not understand what I was being told; I was like ‘but I was saying that my friend was really good at squash, it wasn’t any reflection on you as a person’ and he was like ‘but can you not see why I would be upset by that?’ and I was like ‘no’. And he was quite drunk and the significance of that is that he therefore did not mind spending what was ultimately the next hour and a half going over it over and over and over again until I was like ‘oh, I understand’. A lightbulb moment, I was like ‘this is what they’re talking about’. And at that point I went off to what was at that point a 24-hour healthcare library and started reading books on autism, and I came back in the morning being like ‘yeah I’m autistic, this is a thing, I’ve got loads of books on it and I’ve found out what the problem is and now my life is going to better’. And I don’t know whether it was much better, but certainly self-knowledge definitely made a great deal of things make a lot more sense to me, and that’s what started me off down that road.
Heather: I can’t imagine not wanting to know. I can’t imagine where someone would be, what headspace an autistic would be in not being curious about themselves. I guess it’s just got to be a generational thing perhaps, but I’m surprised that anyone would go ‘no no, I don’t want to know, if that’s the case I wouldn’t want to know’. Do you have any thoughts on that?
Sarah: I think it’s a fear thing. If you have a concept of your own identity and then someone says ‘actually, you’re wearing a person that you’re not’, very difficult to take in. It’s like everyone has met someone that everyone knows is gay but who just isn’t prepared to admit it to themselves, and you know that can reach absolute levels of absurdity where literally everyone around you knows that you’re gay, and people make jokes about you being gay and you laugh along with it, but you’re telling yourself that you’re not actually gay. I mean obviously it’s much more subtle with autism because you’re talking about something that exists in your mind rather than an attraction to another person which is a bit more blatant, but I think in many ways it’s exactly the same. In terms of coming to understand yourself, not understanding why you’re different from other people, other people recognising it in you, the struggle to come to terms with understanding what that means and what kind of life awaits you if you embrace it.
Heather: I don’t know, I’ve found personally that the more self-knowledge I’ve had and the more introspection I’ve had over it the better it’s been for me. But I can see that someone wouldn’t want to necessarily challenge their identity if they have a very ingrained sense of what their self is, so I guess I get that.
Sarah: Exactly. The challenge for us as the Empire is to work out really how can we bridge that gap, and how can we make it much more comfortable for people coming to understand. The whole reason that gay rights is where it is at the moment is because so many people went to do that work. I mean the original founders of the LGBT movement back in the 1890s came up with some fairly crazy concepts of identity based around the planet Uranus and calling people Uranian and dividing men into whether they were active or passive homosexuals, that kind of thing, because that was how they managed to divide it into concepts and categories. And then you fast-forward to sixty years later, Edward Carpenter is writing novels about ‘inverts’ and that kind of thing – the whole idea of gay identity has really developed in the last hundred years, and I think in many ways autism is in the same place. We started off with Hans Asperger’s ‘little professors’ and then we got into people having refrigerator mothers and taking no interest in other people, and then we realised that actually most autistic people do have an interest in other people, they just don’t know what to do with them. And then it became a disability and we brought in the social model of disability, and now we’re moving on to the neurotypical/neuroatypical model of people just having different cognitive processes. It’s still very much in flux, how we understand ourselves as autistic and how that actually works and the conceptual categories that we place upon that as human beings linguistically and conceptually, it’s still very much a work-in-progress. That’s something that we need to continue to do as the Autistic Empire, to work out how to conceptualise and explain autism as a civic identity, as the idea that you have a people and you are not alone, that we have commonalities with each other and trying to really nail down what those commonalities are. Because at the moment we’re still quite vague about it, we just know that they exist, we know that we’ve found each other, we know that we have other people in our lives that we’ve also found through this feeling of a-dar, but actually being able to nail down what is it about this person that is autism and what about it is something else? And what about the whole range of comorbid conditions that exist such as ADD and dyspraxia and all these things that exist in our heads, and we have multiple different diagnostic criteria for but which fundamentally at this point seem to be so common that one may as well just call it a variety of autism? What is the world that we live in? These are still questions that we’re having to ask and we haven’t created answers to any of them yet, but we will.
Heather: Certainly not concrete ones, but there’s definitely discussions that have gone on previously in the Facebook groups about ‘who else has this?’ and ‘who else has that?’ and ‘who else has the other thing?’ and I can see where the Quora that you’ve created is a great place for this to become an actual database, not just random questions that people keep asking over and over and getting post responses to but it’s not being catalogued in any sort of way. So the catalogue is something that’s desperately needed, so that we can see – we can start making very Aspie charts and graphs [laughs]. Take the data and do something in Excel with it. Yeah, I think that’s fantastic, I think that’s definitely needed and I think that would move along the process of creating a real concept of identity a little bit better.
Sarah: Exactly. And it’s not going to be straightforward, but we’re really hoping that by taking a systematic approach to this issue rather than discrete pieces of research or one institution coming up with one thing and another organization coming up with another, if we can create some holistic piece of work that is all interlocking and is constantly adding in new data and recalibrating the model. I’m being really, really autistic right now but you know what I mean [laughter]. I want to take all of this data and I want to systematise it and create something beautiful from it, and all of us will be so much happier as a result.
Heather: I think we would, I think that would make a huge difference. I’ve been watching these groups ask these questions over and over again and I’m like ‘why doesn’t anyone search the group and see if this question has already been asked, or answer it because that’ll pop it up to the top of the group again?’. Then anyone who’s new can see it or whatever. I’m thinking ‘this isn’t very productive’, just because it isn’t actually being used for anything other than someone’s personal satisfaction to feel like ‘I’m not alone in x, y or z for this moment’. But we have one group where this guy keeps asking the same question over and over, like monthly [laughs] and he’s sort of become – he can’t get out of his shell and he won’t actually go out and meet people. He desperately wants to meet people but he can’t leave his house, he just refuses, and he’s stuck in a terrible rut. I get the rut, I totally get it because I have my own ruts. The poor guy, he’s a little irritating sometimes – he’s a sweet little fellow, I feel bad for him. He’s a young guy, very young early twenties I think, but he’s very much under Mommy’s coattails and he won’t leave his house, and it’s a shame because he does have stuff to offer but he’s stuck, and he’s too afraid to step out the door and see what life has to offer and it’s a shame because I’d like to see him progress. But we keep trying like ‘hey what about this, what about that?’ and we’re like ‘maybe he’ll meet a girl’ [laughs] and they can have nice little autistic kids, that’d be great, but we can’t get him out of the door.
Sarah: I have noticed that there’s quite a lot of commonalities between autistic people, that the way in which I have sensory experiences do not have to relate to how someone else has sensory experiences, that don’t have to relate to whether they have anxiety or depression or epilepsy, or how their background resembles mine, in order to feel like I have something in common with them. I’ve known that I was autistic for ten years and I have found consistently throughout my life that autistic people are just the people that I get on with better in my life, and a lot of the people that I really really like subsequently turned out to be autistic, found out they were or were diagnosed or ultimately I told them [Heather laughs]. So I have come to the conclusion that in some meaningful sense we are a people that have a shared lived experience of existence as autistic people that we do not have in common with others, be they neurotypical or any of the other people from the neurodiversity spectrum.
Heather: Okay so I was going to ask you, if we already have a community why build a community?
Sarah: The number one problem that I have found among autistic people is low self-esteem and feelings of loneliness and isolation. Even for the people who have by all standards of modern society succeeded, they have a family, they have a job, they have hobbies, they are integrated into their society, I have found a lot of them still feel like there’s something missing. And a lot of those people feel better for hanging around other people that I know to be autistic, so what I want to do with the Autistic Empire is one, to create a space that allows people to hang around in it that is based around the idea of an autism-specific identity rather than a disability or something that someone has to overcome, or a challenge or something like that. A lot of the autistic people I have met in my life do not perceive themselves to have a disability, do not perceive this to be anything wrong with them, are not interested in joining advocacy organisations; they do not see the relationship between the work that is going on in the organised autistic community in their lives. That’s partly because it doesn’t have any relationship to what they want to do with their life, what they need is just to be around other autistic people just existing. Doing things that they enjoy, be that fishing or talking about labour market policy – that kind of thing, they’re not interested in community organising or politics or policy development. There’s a social need that a lot of existing autistic organisations do not currently meet, so what I wanted to attempt to begin doing was give those people an opportunity to come on board and see themselves as something that’s greater than themselves, to feel like they’re part of something and most importantly to feel like they’re not alone, and that there are other people out there. I am LGBT and being part of the LGBT community has very much given me that in my life. I feel that you read the history of people in our community, much older gay people saying ‘we just didn’t know what we were, we didn’t know what that was and then suddenly we came across the gay community and were like oh, that’s what we are’. And then suddenly I had somewhere I belonged, and I had people who understood what I was going through. I would like us – not necessarily us, I’m not saying that the Autistic Empire is completely innovative and there are lots of people having conversations around these kind of lines – but I would like us to do our bit in order to try and create something similar for the autistic community, because I think we have very similar problems.
Heather: Do you think that in the long term this would become some sort of political entity, because of the lack of policy and the lack of Government involvement, or autistic involvement in Government policy and so on? People aren’t involved but the organization itself might take on a political standpoint, or is the intention just to remain as a community?
Sarah: I think that there’s a lot of other organisations that are already doing policy and advocacy work and I have no desire to step on their toes. I also think that it’s somewhat inevitable that nearly everything you do is political in some sense, the choices that you make are almost always inherently political, and that potentially some of the decisions that we make about the direction that we want to take ourselves in as a community will be seen as political. But I personally see us fitting in to the currently existing autistic communal organisation as very much focusing on building a sense of community, giving people the chance to express themselves, putting them in touch with each other rather than trying to interface between autistic people and Government. In a choice between Martin Luther King and Malcolm X we’re totally down with the Malcolm X side of things. Malcolm was political but he also spent a lot of time building up black pride and I think we need to do more around that as a community, and it’s something that we’ve been lacking which is why I felt that the Autistic Empire was necessary, and to judge by the people who’ve got involved so far they agree.
Heather: I have to say I would agree as well, definitely.
Sarah: A lot of what we’re doing – I want to focus on doing the tools, I am a practically-minded person, I am an Occupational Therapist, I want to make sure that people have a goal that we’re working towards – but a lot of what we’re doing is literally creating a dynamic and creating a conversation and ways of conceptualizing ourselves that literally just involve talking to people, and that’s going to be something that we’re doing much more of over time.
Heather: So I saw you had a test for sensory issues and I took that test, so I was curious as to the purpose of that and what do you want to use that data for?
Sarah: You mean the Grand Sensory Survey?
Heather: Yes ma’am.
Sarah: So the Grand Sensory Survey came out of a conversation between me and my friend Alex where we were – I mean we were arguing quite frankly, about autistic people and their sensory experiences and how those differ from the sensory experiences of neurotypical people, and we found that we just couldn’t find that much data on it. We know that autistic people often have certain sensory experiences but we just didn’t know how prevalent they were. Sensory experiences are actually relatively under-researched at the moment anyway – are you familiar with ASMR?
Heather: Um, stands for –
Sarah: Autonomous Sensory Meridian Response.
Heather: Oh that’s the tingly feeling down the –
Sarah: Yeah, so you listen to someone crinkling a packet of pasta and you feel all like tingly.
Heather: Right, I get that.
Sarah: So do I. That was only discovered by the internet seven or eight years ago, and they only got round to doing an actual clinical study on it three years ago when they were like ‘no this is actually a real thing’, even though the internet had been producing these videos to create this effect in yourself for much longer. There’s a whole load of sensory experiences like that which are essentially only being discussed on Reddit and we have no real idea who experiences them, if there’s any relationship between being autistic or not being autistic for some of them, and more importantly is there a universal sensory experience that autistic people have that we could use as a reliable diagnostic indicator, over looking for impairment in someone – ‘oh, you’re crap at relationships, maybe we need to look at whether you’re autistic or not’. We’re very much under the impression in the Autistic Empire from the work that we’ve done that there are a lot of people who are passing through the radar because they’re doing enough. But at the end of the day there are still lots of things that aren’t working for them in their lives that would be easily fixed if they just knew they were autistic, so a lot of the work we’re doing isn’t about recruiting autistic people who know they’re autistic – it’s about finding the people who don’t know they’re autistic and saying ‘hey, you’re autistic and we’ve got something for you’. So what we want to do with the Grand Sensory Survey is look at the relationships between the data that people report and see if there’s anything meaningful that we could potentially pass on to researchers for something more thorough.
Heather: That would be fantastic, because generally here you don’t get diagnosed unless you have a very visible delay, there is something very obvious that people can pick up on or you’re struggling in school would be a common one. If you’ve made it through up until kindergarten but then suddenly you’re struggling in classes they might pay attention to it, but there isn’t this view that autism is something that we should look at as beyond more than just the medical view of it being a series of disabilities, not just traits, people just being different. So I wasn’t diagnosed until I was fourty [laughs] and that was only two years ago and I’m still processing the whole experience, so I fit into this category you’re talking about of people who had no idea and I wish someone had been around to provide this kind of information so that I could have picked up on it sooner because it would have made a difference to my life. So I definitely appreciate what you’re doing, I think that’s fantastic and definitely here we’re so far behind. We are so, so abysmally far behind the U.K., I mean really it’s atrocious. When I see the organisations working towards work programmes over there I’m like what is going on here, why can’t we see the same things? Instead they’re still focusing on all the wrong stuff and it’s like they want to view us as the lost generation of people, they see us as the adults that didn’t have IEPs, their programmes that they have in school. If we didn’t have those and we didn’t go through all their training, their ABA nonsense, well we can’t be helped at this point so screw ‘em. Or we’re doing well enough that it’s not a problem, that’s the attitude. So I’m happy to see that you’re looking to include those of us who are just diagnosed or those of us who wouldn’t know otherwise, because that information would be vital [laughs].
Sarah: Exactly.
Heather: Okay, so tell me about the website and tell me what people can look forward to when they do join the Empire?
Sarah: So the first step to being involved is to create an account on the website and then to enroll as a Citizen. Once you’re enrolled as a Citizen you get a cool Citizenship certificate that has a border on it depending on how early you signed up and it changes, so the earlier you sign up the cooler certificate you have because you won’t get that colour again. Once you’re in you have the opportunity to post questions on our forum – at the moment it’s merely called Q&A but it’s shortly going to be renamed and rebranded so it looks more impressive – but it’s a message board where people can ask questions about social skills or recent research, kind of the way that Quora and StackExchange work but specifically focused on autistic issues and autistic people’s experiences, and only autistic people can post to it. That’s publicly indexable because the idea is that a lot of the questions that people ask are very similar to the ones that other people have, and we were inspired by people that we saw on our Facebook posting questions about different scenarios that they’ve experienced and saying ‘what would you have done then?’ or ‘what should I do here?’ or ‘do you think this is the right thing to do?’ and people feeding back. We thought that was absolutely fantastic so we’ve tried to create a space where people will be able to continue to do that, but the questions and answers are going to be searchable so people typing them into Google should be able to find them much more easily, and that will be accessible to all Aspies everywhere. We’re also planning on creating a resource section that we’re calling The Vault because I’ve never let an opportunity for a good name pass me by, and that’s going to be a space where we write up resources on different topics. There are lots and lots of resources out there for autistic people on how to manage in certain situations, but few of them are written by autistic adults for autistic adults. In many circumstances they’re written at parents or professionals, they’re aimed at children but as an aside they will also work for adults. This is very much saying ‘here are hints and tips’ – we’re coming up to Christmas at the moment and we’re going to be producing resources around how people enjoy Christmas and ways to mitigate things that people find stressful about Christmas, and that kind of thing. We’re very responsive to feedback that people are reporting to us who are already involved, so we had someone recently have a very negative experience while at university by someone who was very discriminatory towards them, and they wanted to write a complaint but they didn’t know how to write a complaint. So we’re going to be producing a template for how to write a complaint, I’m going to write a post on ‘why complain?’ and we’ve been very much led in that by reactive circumstances. So another reason why people should join is because in this particular moment we’re only two months old and we’re very reactive to what people feed back to us. So if people tell us they’re interested in something we will sit down, look it up, write it up and create something for it. We’re also planning, once we’ve got all of that stuff built, to try and create various tools that are of use – not just for our citizens but for people generally, but obviously it’s led by the people who’ve chosen to join us and share in our vision. So we’ll be looking at creating customizable alert cards, because at the moment the alert cards that exist for people who need to be able to alert members of the public or staff to the fact that they’re having a meltdown or that they need to get out of an environment or that kind of thing, at the moment the cards that exist you hand over and they’ve very generic. They don’t really say that much about autism generally and even the best ones still describe autism in a way that just doesn’t apply to a lot of people. I know that all of the autistic alert cards I’ve ever looked at – I don’t need an autistic alert card, but I also think they’re kind of cool to carry around – all of the ones that I’ve ever looked at don’t describe the way I experience autism, and they certainly don’t cover what I would need to convey to someone in the event that I had a meltdown in public. So what we’re looking at creating is cards where you will be able to write in your own description of your traits and what’s likely to happen if you get yourself into a situation, and what people need to do to get you out of it. That’s an example of the kind of things we’re planning coming down the line, we have people who can just ‘be’ – sign up, support us, get our news, see what we’re going to have happen, push out our stuff for us on their social media or to their friends. Then we have the people who really want to get involved and do things and be practically focused. The idea is to create a community where people can be involved at all levels of active and passive participation.
Heather: So what kind of marketing are you going to be doing to increase your ranks?
Sarah: Well we’ve got our social media channels, we’ve got our newsletter, we’re going to go out and start speaking to other autistic groups just to let them know that we’re here, we’re very interested in working with them and building up whatever they’ve got going on, because we all need to have solidarity with each other rather than being at cross-purposes or duplicating resources of which there is a limited number. We’ve got leaflets, we’re going to have business cards but a lot of it is going to be on word-of-mouth and people being able to vouch for each other. Once we have worked out – as I’ve said several times in this interview, how we’re going to bridge this gap between us knowing that someone’s autistic and them accepting that they’re autistic and then coming to understand what that means for themselves and their standing within the autistic community – once we’ve worked out how to do that process we’re going to be able to be a lot more aggressive about our outreach. I could not tell you what that is going to look like at this time but it’s definitely something that we are spending a lot of time and conversations on thinking around.
Heather: Thank you very much for spending your time with me and I think what you are doing is fantastic, so thank you for that. Would you like to close at this part or –?
Sarah: I guess that I would say to any person out there listening that there is a reason that you are listening to this podcast and that you are not alone, that autistic people have never been alone, that you are part of a people and that for a very, very long time that has not been known. But now it is known, and it’s only going to get better from here.
Heather: Aww, that’s really lovely.
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