Transcript for Episode 17: Cultural Bilingualism & The Autistic Empire with Sarah McCulloch
Interview between Speaker 1 (Meg) and Speaker 2 (Sarah McCulloch)
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Welcome to the Two Sides of the Spectrum Podcast. A place where we explore research, amplify autistic voices, and change the way we think about autism in life, and in occupational therapy practice. I’m Meg Proctor from learnplaythrive.com.
Meg: Before we get started, a quick note on language. On this podcast, you’ll hear me and many of my guests use identity-affirming language. That means we say, ‘autistic person,’ rather than, ‘person with autism’. What we’re hearing from the majority of autistic adults is that autism is a part of their identity that they don’t need to be separated from. Autism is not a disease, it’s a different way of thinking and learning. Join me in embracing the word ‘autistic’ to help reduce the stigma.
Welcome to Episode 17 with Sarah McCulloch. Sarah is an autistic occupational therapist based in London — and I'll point out, I've had another autistic OT named Sarah on this podcast a few times. That was Sarah Selvaggi-Hernandez, this is Sarah McCulloch. Totally a coincidence. So, just to keep it separate, Sarah McCulloch is based in London. She has experience across a range of acute mental health community and pediatric settings. She currently works as the senior occupational therapists in a special school for autistic children. Her lived experience as an autistic adult, and her professional experiences of finding unidentified autistic people everywhere she worked led her to found the Autistic Empire in 2018. Isn't that a cool name. So, the Autistic Empire is an autistic social organization built by and for autistic adults to develop community-based resources on autism as a civic identity, and provide practical tools and services for all autistic people. I'll link to it in the show notes, you have got to check it out.
Speaking of checking it out, you have to hear this episode. If you caught my summit, 'Neurodiversity in the New Year', you might have noticed that the theme was Self-Actualization and Self-Advocacy. I actually first learned that distinction from this interview with Sarah, because she doesn't just talk about self-advocacy, she talks about self-actualization, or becoming more fully and wholly yourself in this world. Here is the interview.
Hi, Sarah! Welcome to the podcast.
Sarah: Very welcome to be here.
Meg: So, tell me a little bit about your perspective as an autistic OT in the schools, and how this shapes your work.
Sarah: I think the most important aspect of being an autistic OT in an autistic school is that you have very similar sensory experiences to the students. So, less has to be explained to you, and to a certain extent, you are able to identify issues quicker. I found when I first started working in schools that people would say, "Oh, you know, why is this child distressed?", and I'd walk in and be like, "Oh, because this lighting is terrible." And it just really makes it easier for you to get to those issues quicker because you can pull up issues like that much, much faster. And by the same token, there are also ways in which therapists can explain stuff to children that I might find confusing, and I'm able to just intervene there and explain quicker.
I found that when I work with autistic people — with both children and adults — that they tend to trust me a lot faster, and that's because I'm just able to translate things into their language much more systematically than neurotypical therapists. I think, you know, that they say autistic people are quite blunt and quite direct, that kind of thing. That's a real advantage when you're trying to explain something to an autistic child because they understand blunt, they understand direct. They don't particularly take offense.
Meg: Yeah, I love that. That's the whole idea that there's not this one right way of communicating that we have to teach kids. You're saying, "I can communicate with them in the way that's right for them." And that is a huge advantage.
Sarah: Exactly. I think it's one of the real advantages of being an autistic professional working with autistic people; it's that, you know, one of the commonalities that we have is that there is an autistic language and a way of viewing things that you can switch in and out of. And sometimes it's a little embarrassing when you're in a three-way conversation with a neurotypical person and an autistic person, because sometimes I realize that the other autistic person has got the wrong end of the stick, and I'm having to explain it to them. And I know to some of the neurotypical people who are witnessing it when I switch into that language, it sounds like I'm being really rude or cutting. But I can see from the way it's being received at the other end that I have identified that that is the right thing to do, because that person gets it a lot more quickly.
And I found that to a certain extent to be the case in children as well. There was a little boy last week who was going through a phase and sort of coming up to someone and going, "Hi! Hi!", and doing that over and over again because he wasn't, you know — they were like, "Oh, we don't know why, what response he's expecting that he keeps doing that." And he did it to me, and I said, "Hi!" back a couple of times and the third time he said, "Hi!" I said, "You've already asked me, 'Hi'," and he nodded and walked off.
Meg: How interesting.
Sarah: [Laughs] So, I see that it can be a real benefit to being an autistic professional.
Meg: So, those of us who don't experience the sensory world in any way that might be similar to our autistic clients, and who don't think and communicate the way our autistic clients think and communicate, do you feel like this is something that we can learn to be better detectives for, and to be more perceptive of?
Sarah: I think to a certain extent. I think it's interesting to me that the distress of fluorescent lighting is very well known in literature, but it's something that isn't sort of front of center for some therapists the way it is for me, and I think that there are definitely aspects that you can pick up. I think in other ways no; like, it's just the lived experience. And what neurotypical therapists offer is that there will be things that, you know, I will miss, because I'm autistic and to a certain extent, neurotypical language and that sort of thing was something that I had to learn as a child. When I first started working in an autistic school it was actually quite traumatic for the first few weeks because the children that I was seeing were essentially who I could have been.
And, you know, some of the things I was reading in their reports and the ways that they were behaving was the way that I behaved in childhood. And I did wonder if I hadn't gone to a mainstream school and my mother hadn't remained largely oblivious to this for a very long time, whether I might not have then ended up in a special school and not ended up an occupational therapist; I have wondered that. But I think that there are also ways in which I am averse to things in society because I'm autistic, and if children have to be taught to cross that barrier, then I'm not going to be the right person to do it. So, I think that you do need to have a mixture of autistic and neurotypical people. If you're going to teach autistic children to be bilingual and exist as the minority within a neurotypical majority society, then you've got to have both.
Meg: Right. That makes a lot of sense. And it also makes sense to me that you've put in an incredible amount of time and energy into learning the neurotypical language, as you call it. So, those of us who are non-autistic therapists wanting to better understand and better connect and communicate with our autistic clients can't expect to just put in a little bit of time and a little bit of effort and suddenly be really good at it. Because like you said, it's a whole language, a whole culture. It does also seem like people like you should be in pretty high demand because we need to have autistic consultants at our schools showing us our blind spots, right, saying, "Oh, look at the way this teacher teaches, look at these confusing visuals, look at those terrible lights," things that might not seem like a big deal to those of us who don't have that experience.
Sarah: Yes, and I really agree with that. I know that that's the case because every single time I've gone and given a public talk in the last couple of years, I've just been mobbed afterwards by people wanting to ask me questions about their children, people wanting to ask me about themselves, people going, "Do you have any opinion on this? Do you have any opinion on that?" —and sometimes I do, but there's a limit to my own knowledge, give me a couple of years. So, yes, I think it's absolutely the case that institutions, and educational facilities, and health facilities, if they want to be able to meet the needs of autistic people, you are going to have to hire autistic people as trainers, as consultants, as professionals in the team, or you just won't get that information.
And I think that there are — I mean, I don't know what situations are like in America, but certainly in the UK, there are a fair number of autistic advocates who do work professionally that you can hire as consultants and trainers, and I will always advocate for organizations who are looking at training to look at hiring one of those. But it's still, you know — we only really entered this world about 20 years ago and so it's still very nascent. I think that the unions and professional bodies that you will be able to just go to are still very much building themselves up to that point. I won't blame everyone for not automatically thinking of it, but I would suggest that they definitely something you would need to take into account in the future if you want to be part of the New World.
Meg: Oh, I love that. Yeah, so many things go back to this idea that we don't need to reflect with guilt or shame on what we've been doing up until now, we just need to change it and do differently. I have an online course that I sold for a year before I got the message of listening to autistic voices and having autistic consultants, and there were some things I was doing right, and there were others that I had missed. And when I started having autistic people take the course and give me feedback, I was like, I need to re-record this right now. So, it really changed what I was doing and therapists like that, or at least the therapists who I interact with and who listened to my podcast. They're like, "I like this new perspective, I can't wait to do something different because it feels more respectful and more empowering, which is why we became OT's." Not to perpetuate cultural dominance of non-autistic people over autistic people, I don't think that's what we set out to do. I hope not.
Sarah: Exactly. Well, I mean, the whole reason that I became an occupational therapist in the first place was after my diagnosis and I realized that the way that the healthcare system was treating autistic people was inadequate. And the only way I could reconcile myself to that work was by trying to change it, and so that's how I ended up in healthcare myself.
Meg: That's wonderful, and I'm so grateful to you for all the things you do to share your perspective and help us join you in making that shift. We will get to talking about your awesome project in a minute, which I'm excited to talk to you about. So, before we go there, I want to talk about pro-neurodiversity approaches and what that looks like, because that's one of the shifts that we've been really working towards on this podcast, is how we can help clients meet goals but do it from a strengths-based perspective rather than trying to remediate deficits or change the way autistic kids think and learn. So, what advice would you give to OT's in the schools or in other settings who are really trying to figure out what a pro-neurodiversity goal is, and what goals or behaviors we should not be trying to change?
Sarah: So, I personally take the attitude of, 'If it ain't broke, don't fix it'. Whenever I get a referral, my first question always is, "What is the problem here?". What is the problem here that needs fixing, because sometimes you do get referrals from parents and teachers who, first of all, might not understand what OT is. I'm sure we've all experienced that. And, you know, but you'll get this referral that's just like, "Oh, this child has this problem, fix it." And I'll be like, "Why? What is the issue here?".
I've had a referral a couple of months ago saying, "This child crosses his eyes for 10 minutes every morning," and I batted it back and said, "So? I don't care. Like, you're gonna have to show me what the actual issue is." I mean, I looked up like, are there actually like potential medical problems with doing that and couldn't find any long-term harm to it. So, I said, "Well, I'm not going to try and stop that child from engaging what's probably like a fun game for him."
And similarly, I think that the child, to a certain extent, has to be on board with what you want them to do and has to be capable of making that change. And something that makes me quite uncomfortable in a lot of the places that I've worked has been trying to change people's sensory tolerances and, you know, setting goals along the lines of, "Oh, they'll be able to tolerate this loud noise for like X minutes," and to certain extent, you are just powerless to change that because they're not averse to loud noises because they're naughty or because they haven't heard enough loud noises. They're averse to loud noises because there's a processing thing in their brain that makes loud noises much more acute and painful to them, and you're not going to teach them to be alright with that. At most, you are going to teach them to tolerate what is a form of torture, and there has to be an extreme reason for you to place that demand on a child.
Meg: Sarah, I'm so glad you brought this up. This came up in the second episode of the podcast with autistic researcher, Damian Milton, and he said the same thing. And a lot of people responded to that, because I think we come from this perspective of sensory aversions being anxiety-based, and that's when you do systematic desensitization potentially to break down the anxiety and help the child have positive experiences. And what you and what Damian are saying is, it's not anxiety-based; or when it's not anxiety-based — which is, we should be assuming probably that it's sensory-based, especially in young kids — systematic desensitization is just torture. We're not going to have a goal for me to tolerate a fire alarm without covering my ears, that would be inappropriate.
Sarah: Absolutely. I was asked to talk with Simon Baron-Cohen, and a mother put her hand up and said, "Oh, you know, my child's been — I've been advised that my child doesn't like loud noises, so I've been told to play loud music for several minutes a day until he's alright with it. What would you say to that?" I think Simon Baron-Cohen said something along the lines of, "Please don't do that." But I went straight over to her afterwards and said, "Please do not do that to a child, because if they find it painful, they find it painful. And the only time that that's going to change is when they grow up and the changes that are happening in their body mean that they are just less sensitive to it. You're not going to reduce that sensitivity by just making them listen to it all the time."
When I was a child, I couldn't wear wool, and, you know, my school uniform was made of wool. It was a real issue for me. And maybe if the OT said, "Well maybe she needs to try wearing wool regularly to get used to it," I would've put up with that, but I'm now 31 and I still cannot wear wool. Like, it has to come off immediately. That hasn't changed in the slightest for me in the last 30 years, and I don't think it's going to. I think that that is the case for a lot of the sensory needs and issues that autistic children present, where then what I would recommend is please just don't expose children to it.
And maybe if you write that down on their records, and they hit puberty, that's something you can return to when they're 16, 17, because maybe that has changed for them. I know that there were, certainly when it comes to food for example, that's quite changeable. There are certain things that I couldn't imagine eating when I was 9, 10, that I'm very happy to do so now. But when it comes to particular materials that you're averse to or your sensitivity to noise, I'm not sure that that changes for many people, and I really would not set your professional stock by trying to do so because it probably won't work, and it will be quite upsetting for you and the child.
Meg: I'd love to ask your opinion on feeding in regards to sensory aversions, because that's the question I got a lot after that podcast episode is, what about highly restrictive eaters? So many therapists are trained in a play-based systematic desensitization approach to feeding therapy, which is often really effective, and they said, "Should I stop doing this?", and I said, "I have no idea." Do you have an opinion on that?
Sarah: It's such an interesting question, and I really thought about this in recent months, because I think if we take the problem, you know, show me the problem attitude first, the first question for me is, "Is it harmful to this child to have that restricted diet?" You know, if they've got under 20 foods, but those foods contain all of the necessary nutrients to sustain themselves — like, if they're purely eating carbohydrates, then you have to say, "This as an issue that we need to focus a bit more on," but if they're eating fruit, and some meat, and some pasta, and they're only eating these very restricted diets but they happen to be nutritionally whole, then I would say that this is less of a concern.
The second issue that I rate — and I have set this up, discussed this with parents, is that one of the reasons why parents are so concerned about restricted eating isn't because of the health of their child, if what I've just said is the case. It's about the way in which that restricts their social interaction. And, you know, if you have a child that will only eat a very specific type of meatball from a very specific shop, that child can't then go off and play with other children and, you know, have a meal there, and that ultimately is going to be far more harmful to them in long-term than the fact that they'll only sandwiches, because that's fixable. So, I would frame it like that, and then I would say, "Yeah, that is definitely a concern, and I think that what you have to do then is to try and work on expanding the diet in a way that kind of works within the mindset of that child, because I don't know why they do that." It might be that they don't like food, and therefore they've only got a certain number of bites that you can persuade them to take any food, so why would they not take it of the foods that they enjoy.
Actually, I had this exact conversation with a 23-year-old man about six months ago, He would only eat certain takeaway meals and these fixed foods that his mother made for him. I said to him, "Okay, cool. Like, why don't we have like a cooking program, why don't we try making some foods that will appeal to you so that you can try and expand out your diet, because ultimately you don't have any dietary problems because you have nutritionally whole diet plan. But on the other hand, this is also really affecting your ability to have friendships because you can't go out for a meal with anyone." And he turned around and said to me, "I am on benefits. I have a very, very limited budget. Why would I spend that budget on food that I don't know I'm gonna like?"
Meg: Yeah, no, I love this idea that we need to spend a lot more time listening, and observing, and in whatever way we can asking, "Why?" to learn from the child or the adult about their food preferences, and then going back to your 'So what?'. So what, they eat a restricted diet — so what? Well, they're gaining weight poorly, or it's causing this health issue. Okay, let's address it. But starting with that 'So what?', can you give me some more 'So what?' examples from your work, or just hypothetical examples of things that therapists are often compelled to work on but that maybe we should be saying, "So what?"?
Sarah: Well, I guess, one of them is — something that I get asked is, "How do I get these children to keep their socks and shoes on in class?" Because my answer to that is always been, "Why? You know, why does that matter?" I think outdoors, that's a different conversation, like it's hard ground, you could step on a rock or something, but if you're in a relatively clean classroom and the child wants to take their shoes and socks off during class, what is the issue there? Shoes are restrictive. And there are lots of people — I mean, Albert Einstein is a great example of someone who notoriously refused to wear shoes and would wear socks to black tie dinner parties. He was obviously an aspie, and we have to say to ourselves, "What is the issue here?"
And if the issue is you come across a massive weirdo, then that's something to say to the child, and say, "You know, the reason we're telling you to do this is because it's a socially negative behavior that may cause other people to think less of you, and if that is the choice that you want to make, I don't have a problem with that. But you need to know that that's why we're trying to teach you this." I think I'm very big on building frameworks for people to think in, instead of sort of setting rules and going, "This isn't okay," or, "That isn't okay."
Like, I don't know how many of the people listening to this who have tried to explain a rule to an autistic child and have a child turn around and go, "That's a stupid rule," and you've not had a response, because it is a stupid rule. But on the other hand, it is a rule, and there's a reason that it's there; and if you break it, people will notice that you break it, and then you become an outsider. Maybe that's something that each person has to judge for themselves, and that's something that I'm very, very big on explaining to people. It's just like if this is the way that you want to act, and it's not harmful to anyone else, it's a mere matter of social preference — and that this is the society that you live in, and there's an expectation that you're going to wear shoes and socks, and if you don't, you mark yourself out, and that's a problem that you're willing to take on, I don't have an argument with that.
Meg: There's this idea that autistic people are rigid and resistant to change, and I love this example because it points out the ways in which non-autistic rules are so rigid and so arbitrary. It's like, you have to wear shoes because you have to wear shoes, because that's the rule. And it doesn't even make any sense. And there's a thousand things like this.
Sarah: Exactly. And, you know, throughout my life I've basically been a troublemaker, and lots of autistic people have been where you go, you know, "Why is this the case?" and someone says, "That's policy," and you go, "Well, who made that policy? What is the methods which, you know, how do I change this policy?" and then people start getting uncomfortable and they're just like, "Oh, I don't know." And that's the point to which you can start going, I think I'm probably alienating myself from this situation, and you have to decide! Like, am I going to make a complaint? Am I going to try and change this environment, or am I going to suck it up and take it? And that comes down to ultimately the kind of person that you are. A lot of autistic people will go along these rules and will enforce them, and a lot of other autistic people will turn around and go, "This rule to be swept away and thrown into the dustbin of bad ideas," and set forth to change it. And that's absolutely true for neurotypical people as well, obviously, but I think autistic people are a lot more willing to break the motto and say, "Why don't we change this rule."
Meg: Yeah, we need those people in the world. Those people that say, "This rule is terrible, and let me say it bluntly and clearly, it has to change."
Sarah: Exactly. And you will obviously find that in autistic children as well. I think there's an argument to be made that you try and enforce conformity, but I mean, there's a great quote doing the rounds on the Internet — the problem with trying to force a round peg into a square hole isn't that he doesn't belong there, it's that you're breaking the peg trying. I don't want to tell everyone that they always need to negotiate with autistic children, because I think you know that that can be a bad idea from time to time.
But what I would say is that even if you get a child or an autistic person of any kind who does want to question, or he does want to design better systems for them and for everyone else to operate in, trying to get them to just conform with either result in them becoming very unhappy, or you'll just fail and frustrate yourself. When I was at school they regularly tried to put me in detention, and I would consider their arguments for doing so unjust. And by 12th grade, possibly 13, 14, you know, they gave up because all of these teachers were giving up their lunchtimes to sit with me in an hour, and like being absolutely self-righteous that I've been correct to do what I've done, and that they weren't going to break me, and they didn't. Ultimately they broke first, so why did we even bother having this argument?
Meg: I imagine they thought they could win it and I mean, I think that's the next question. There's 'So what?' and then there's 'At what cost?'. At what cost to the child or to the adult do we try to change this, what do we lose? Well, we lose the voices of people who think differently than us which we so badly need in so many ways, and we lose that person's ability to access their life fully and without unnecessary trauma.
Sarah: Absolutely. And I think that 'trauma' is really the key word there. I think that you will struggle to find any autistic adult who does not have some kind of lingering behavior that could be put down to trauma. It's very stressful growing up not knowing that you're autistic if you don't know, or being put in this box of stereotypes if you do find out that you're autistic. I said earlier we're living in a new world that's rapidly changing, but that means that all of us who live through that rapid change very much fell through the through the gaps, and those of us who survived without mental health problems are lucky. Ultimately, when you're going 'At what cost?', you have to say if you've got a child who's violent, or you've got a child who just doesn't have the capacity to really understand what you're telling them and does require extra support and direction, I'm not saying that those people don't exist and that all autistic people are just chronically misunderstood.
I don't think that that's the case, but I think that that's where you really go down to individual client-centered therapy and you go, "What does this child need?" and you start off with assuming competence. I think that that child really has to demonstrate that they aren't able to engage with you at a developmentally appropriate level before you go down to something else and using binary choices rather than trying to have a conversation with them. It can be so limiting when you've got a child who's non-verbal because many of the AAC options that they have restrict them purely from making choices and offering commentary. And I think that's absolutely tragic, both for them and for the broader autistic people because we don't know what they think, and we don't know how to help them.
Meg: Absolutely. Sarah, I want to shift a little bit and step into your world, the Autistic Empire. Can we start with the name, it's amazing. Tell me about the Autistic Empire.
Sarah: So, the Autistic Empire is an attempt to build a community that's focused on a goal. A lot of — an internally focused goal. A lot of autistic social groups don't really work out because you've got people who are still kind of learning their social skills just putting themselves out there and then not really getting anything back, so you just have parallel conversations going on. And what a lot of autistic people will benefit from is being able to focus on a task. What we're trying to do is create a community that's focused on the task of building tools and services for autistic people, because we have the lived experience, we know what we're talking about. So, that's what we're trying to create. The reason I decided to call it the Autistic Empire is because it's to deliberately invert a quiet power hierarchy of, you know, autistic people are minority and they're always going to be weak, but we're always going to be dependent on other people to support us, and tell us what to do and, you know, that kind of thing. Neurotypical people can't fix their own printers, like we have our preferences.
The point is, the Autistic Empire is to go, this is a space in which we are the dominant majority, in which the expectations in this organization and the spaces that we create are set up with autistic norms. And here you are great. Here, we understand what you're saying, and to certain extent, we understand the problems that you're having because we're having them ourselves. So, let's create this safe space, if you will, let's find out what we have in common with each other; let's start there, and let's start contributing to autistic research, and autistic culture, away from kind of negative stereotypes, away from negative feelings, and resentments, and feelings of rejection. Because within the Autistic Empire, this is your world. It's our world, and you're a member.
Meg: I love this. In one of the early episodes on strengths-based approaches, we talked about sort of moving beyond the social skills groups model towards interest-based groups model. And I love this idea as a natural extension of that. The interest is self-advocacy and creating self-advocacy tools for other autistic people.
Sarah: Yeah. And, you know, not just self-advocacy because there isn't always — there's always a sense that we're trying to bridge the gap and knocking on the door of neurotypical society asking to be accepted. There are people doing that, and that's really important, absolutely, but there's not so many people being internally focused and saying, "Let's establish our community, and what we're like as people, and try and work on what we're interested in, and what an autistic community actually looks like in a sidestepping of a framework that medicalizes us, and sort of comments on the way we talk to each other, and how it's disordered," and just say, "Well, maybe that's normal, and let's talk to each other and see what kind of issues arise."
You know, I've certainly found when I speak to autistic people — I'm also LGBT, and when I go into the LGBT community, there's an immediate understanding there that we don't have to explain to each other, and I've certainly found that within the autistic community as well. We're getting there, but the issue of the Autistic Empire is really kind of going, "What do autistic people look like when you strip out all of the medicalization, and sidestep the disability model, and just sort of start with people, and what works, and what doesn't work." And where it doesn't work, what would actually help. And then we've got it.
Meg: So, maybe self-advocacy isn't the right word. Maybe self-actualization.
Sarah: Yes. Self-actualization is exactly what I'm after. I want autistic people to feel good about being autistic. There is an autistic journey that we have to undergo in terms of our identity where you start of not knowing you're autistic. You know that you're different, you know something's wrong. And people don't tell you why, or they band you around this word that doesn't have any resonance with you, but it just is a justification for lots of things that they've done to you. And then you move from that to understanding what autism is and, you know, children who are told that they're autistic don't really understand what that means and it's never really explained to them, it's just why they're different from other children. They understand that.
I was having a conversation the other day about profound multiple-learning disabled people who are autistic, and we were talking about building autistic identity within them, and the struggles I have had trying to meet enough people who fit that description, and being able to communicate with them so I can get a sense of what's going on for them. And the person that I was speaking to said, "Do you think that they really have any concept of identity?" and I said, "Well, you know, I don't know if they have any higher level concept of identity, but they understand shame, and they understand the way their families treat them. You can very much see that, and I don't want them to feel that way." And so, like, you know, you start off with that feeling and then you move on to, "I understand what autism is and I hate it. I resent this part of me. I wish I wasn't." It's heartbreaking to me when I have conversations with people who wish that they could be cured, because fundamentally you can't. It's written into my DNA, you cannot remove the autism from me. I can and always will be autistic, and there's nothing that you can do about it.
I had a conversation last week with someone who tried to tell me that all autistic children are diagnosed before the age of three, and anyone who's told that they're autistic above that just has attachment problems. And I was like, "I have never actually heard someone attempt to tell me the refrigerator theory is still valid. I think it's disgraceful." But when that's the message you're getting, you go, "I don't want to be able to autistic." But you can't not be autistic, so what are we going to do? And the answer is moving to self-actualization, as you said, and going, "I am autistic, and this is who I am. This is authentically me. You can't remove it from me, and I'm not ill. I'm not disordered. I might be disabled, but I'm disabled because of the disabilities that I have, and not because I'm autistic. Autism is about the way that I think, and the way that I process, and the way that I interact with the world. It doesn't come with negative or positive connotations. And that's me."
And what I want to do is obviously talk about positive connotations as well, because autistic people built the society that we live in. The engineers, they're the people who built the tech, you just have to go and look at the titans of Silicon Valley to be like, "Oh, yeah." Like, you can't — you know, we're not all sitting around on like benefits going, "Oh, woe is me," and we don't realize that because our definition of autism doesn't expand to include those people because it's a purely negative thing that drags down someone's life. And so, what we're really trying to do is to build a positive autistic identity that acknowledges everyone in the community, from people who are non-verbal up to people like Mark Zuckerberg, and saying that we have things in common with each other. There are ways in which we think about the world and ways in which we interact with each other that are universal. And, you know, I've talked quite a lot about that, and if you were to turn around and say to me, "What are those?", I'd have to say, "Well, I don't know yet, and that's something that the Autistic Empire is really working on."
Meg: Tell me about some of the projects that you're excited about at the Autistic Empire.
Sarah: So, the biggest thing that we've done, I think, so far in our history — which is only since 2018 — was that we launched a project called The Grand Sensory Survey where we, you know, we were saying to each other, "What does it mean to be autistic if we're not looking at it from the perspective of impairment?". And so, one of the first areas that we wanted to look at was what do we have in common in terms of our sensory experiences. Because we know that lots of autistic people are under or oversensitive to certain materials, to certain lights, that kind of thing. What if we looked at all of the senses, and we established a baseline of what's normal for both neurotypical people, and for autistic people?
So, we sent out this survey, and we got several hundred people to fill it out, and we were quite shocked at what we got back, because we got, I think, things that everyone knew — like, lots of autistic people are anxious, lots of autistic people are depressed, lots of autistic people have strong aversion to bright lights, and strong taste, and stuff; but we also discovered that a quarter of our autistic respondents have afantasia, which is not having a mind's eye. Like, not being able to create images in your imagination, and almost none of non-neurotypical respondents had that experience. If you can't create images in your own mind, what implications does that have for your ability to run through scenarios in your own mind and to predict potential social situations, or to be able to remember things. What's the impact that that has on your memory? We don't know.
And we were really completely shocked by that because it does appear to be a potential diagnostic criterium for autism which no one knows about. And afantasia itself was only really medically defined for the first time in 2015, like it's actively being studied. So, we really seem to have like hit on that there our sensory experiences that autistic people have that neurotypical people don't, and that that is actually a valid conversation to have.
We also found that approximately a third of autistic people, or at least the respondents in our survey, have face blindness. What implications does that have for your ability to read people's emotions if you can't see their face, if you can't process what their face looks like? That has huge implications. And a third? That's absolutely incredible. I think, perhaps most significantly for much of what we were talking about previously, is that about 15% of the respondents — so all of them were adults, by the way — don't feel hunger or thirst. Their enteroception function, you know, just means that they don't feel hungry or thirsty, and they have to remind themselves externally to the sensation that they need to eat or drink something.
And when we got that through I was like, that's so interesting. What implications does that have for autistic people who have behavioral problems, if what they're experiencing is not violence or behavioral problems, but dehydration? That was probably the biggest takeaway that we had, because as soon as we got that data through, we went out and said to almost every single autistic person that we met, either in my personal life or at talks and stuff, and said, "You know, have you drunk something lately?", and the number of people who turn around and go, "No, I haven't. I need to go do that right now." That has very, you know significant implications.
So, that was just our pilot survey, and we're now going to be running a methodologically rigorous version of that with an organization in America who has agreed to help us with some ethics researchers and committees. But that's the kind of information that we're pulling out, and once you have that information, you can then go, "Okay, well, how do we need to shape our lives? Do we need to release an app that has like a regular alarm on it to tell you to drink something?" I don't even know what to do about the fact that a lot of people don't have a mind's eye. I don't even understand the full implications of that, but what we do know is that when we produce them — we're trying to test on the internet for it and put it out on our Facebook page, and it was promptly shared 70,000 times. And loads — hundreds, thousands of people were like, "Oh my god, like, is this a thing? I didn't realize that this was a thing."
And so, that's the kind of impact that we're able to have as an organization, and there's more things like that coming down the track. That wouldn't be happening if we weren't sitting around going, "What do we mean to be 'autistic'? Let's kind of start again from the beginning."
Meg: Yeah, that's so important and so impactful. I love this place where we're at now of just kind of wondering what are the implications, and how will this change how we support people. I know you have a couple of other projects as well. Do you want to talk about them?
Sarah: Yes, I would like to talk about alert cards. And so, I'm sure that your listeners already know there are alert cards that autistic people — typically children — can carry around that they can produce in the event of an emergency or a negative interaction that identifies them as autistic, and gives a vague rundown of what that means. The problem that we've found with this is that they're very generic. Although I talk a lot about autistic commonalities, there's a very broad spectrum of experiences, and behaviors, and priorities that people have. And so, what we've produced is an entirely customizable alert card that just has 'I am autistic' written on the front, and then on the back you can put up to five different lines about what's important to you.
So, if I look at mine, for example, I know I come across probably as someone who doesn't need to carry an alert card but actually there have been situations where I have been in trouble and needed my 'Get Out of Jail' card. Mine says, "I need you to know that you need to explain what you're doing and why my troublemaking's a battle. Florescent lighting can impair my vision," — I went to an OT conference once and went blind. I actually had to sit in a seminar for 45 minutes unable to see because the lighting was so powerful — "If I leave suddenly, I will be back to explain later. And I'm exempt from wearing face masks," which was something that we recently had to put on there because that's been a real issue for a lot of autistic people in a time of COVID.
I have, you know, extreme sensory sensitivity around my face and I can't wear one. I start having a meltdown, and you can have a master's degree, and be a senior professional in a school, and still have these issues. So, we created these cards so that you can convey what you need to convey, and maybe you don't have any issues. Maybe you've only got one issue, maybe you want bragging rights. We've also built them as membership cards. You can put whatever you want on them and say, "Hey, ask me about these," or, you know, "I'm right. I always will be." Whatever it is that you need to, whatever it is that you need to put on it, and as far as we're aware, no one in the world has produced something like this yet, so we're very excited about where we take it.
Meg: I would love to meet somebody at a party and have them hand me a card that said, "Ask me about bees." That would that would just immensely improve my social interaction with a stranger if I knew exactly what to ask them about. I think that's wonderful.
And you said, "I have a master's degree, and yet I might need this card," I think most of us, if we stretch ourselves, can imagine times that we have been so dysregulated, stressed, upset, hungry, whatever it is, that we can't give the information that we need to be giving to somebody in that moment. And being an autistic person in a non-autistic world, I imagine that happens more often. That makes a lot of sense to have that as a tool. It's very adaptive to be able to say, "Here's what's happening," and/or, "Here's what I need." So, I will definitely link to your Autistic Empire resources as well as the alert cards on the show notes. How do they work? Do people type into them and print them out, do they order them?
Sarah: If you go on our website there is a link to a designer, so we have lots and lots of different categories of options that you can choose from that we compile. You can either just select one of those or use it as inspiration to put your own custom versions in. You can put an emergency contact or not depending on your needs, and then you click, you pay, shipping is included if you're in the UK or it's added on if you're outside of the UK, and then you receive it in the post.
Meg: That's awesome. I'm so excited that that resource exists, and I think that'll be a nice session for a lot of therapists with their kids to work through — "What do you want to say? What do you want or need people to know about you?" — and building that self-actualization, perhaps, with their clients as well. So, I always end with this question: Of everything we've talked about today, if there's one thing you'd like to see OT's start doing or do differently in their work, what would that one thing be?
Sarah: In all honesty, I'd really like OT's to stop buying stuff, trying it out for a couple of sessions, and then dumping it. I find it really unhelpful.
Meg: Tell me more about that.
Sarah: You know, I think it's an issue in kind of the medical and health profession anyway, and that you go along to these professional networking meetings, someone will pull out this really cool tool and say, "Oh, we've invented this really cool thing. Would you like to try it?", and then you go, "Yeah, I would really like to try it!". And then you spend $70 on a gel Blackboard, and you show it to a child who's not very interested, and then you go, "Cool," and then you put it down and you don't use it again. Then someone else comes along and says, "Oh, wouldn't you like to spend $1,000 on buying this particularly jazzed-up hopper?", and you go, "Yeah, I do want that!".
Everywhere I go, there's just cupboards of OT stuff. It's just taken as a given that OT's just come with tons of equipment, and I don't think that we should don't own this stuff unless we're going to use it. And if you're not going to take something and go with an idea of activity including it in your practice, don't buy it. You should be able to go up to 80% of children and have a tool in the bag that you think will work for this child, and not just go, "Ooh, let's experiment," because one or two sessions isn't going to have any impact on the child. You need something that they're going to use day in, day out in their daily life, and if they don't have access to that equipment outside of your session then why do you have it?
Meg: So, what would you like to see therapists doing instead of bringing the latest, fanciest thing, and trying it out, and then ditching it?
Sarah: I would really like us to focus on creating systems, routines, and things that all autistic people can carry out into their other lives — carry out into the rest of their lives —and that they don't need an OT to prep them. I think that that's really valuable. I think, when we were talking about doing this interview, you mentioned that you had Ido Kedar on. And in his book, 'Ido in Autismland', he was very critical of OT because he said, you know, what were we offering him? We were offering him swinging sessions for a couple of hours a week; he wasn't actually doing anything for his muscle tone, he wasn't building his fitness, but it gave us the opportunity to say that we were doing therapy with him.
Actually I was so shocked by that I put that in my master's dissertation and said that this is a real issue. We need to stop seeing ourselves as providing therapy, and seeing ourselves as providing answers that are universal for the people that we work with. There's no point dragging out fancy equipment if they don't have it at home and they're not going to.
Meg: So, being a lot less focused on ourselves, and our session, and some sort of magic happening within our session; being less focused on these things that have no real context or place, and more focused on who is this person, and what do they need to be successful in their daily routines, and their real daily life.
Sarah: As always, the central part of being an OT is being client-centered.
Meg: It is! It should be, but it's so easy to lose sight of that, or it's so often lost in the way OT gets practiced. So, thank you for bringing us back there, and thank you for all of your insight today. It's been so wonderful talking to you, Sarah.
Sarah: You’re most welcome. I hope that both your listeners and the autistic people that they work with will benefit.
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