Speaker 1: 
Testing, testing, testing. This is Audible Artism.

Speaker 2: 
Hello listeners, this is Odd Eye here. Just thought I would do an introduction for this episode as it's going to be something different. What we have here is an interview where the head of the Autistic Empire and one-time co-host of Audible Autism. is interviewed by the host of the program. who talks about her life, her experiences of being diagnosed. Also how she came to create and develop the autistic empire. Think you'll find this interesting. and insight. and all the other usual adjectives that I tend to bring up when it comes to these episodes. My name is Anjali and I'm very excited today because I have a guest in the studio. I'm joined by Sarah McCulloch from Autistic Empire and I actually met Sarah at an event in the summer Autistic Pride in Hyde Park which is held every year to celebrate autistic people. It's welcome to people who identify as being autistic and their families and friends and allies, so that was really exciting.

Speaker 1: 
Sarah is based in the South of the UK. did.

Speaker 2: 
bit of biographical interest. but I think our listeners would be interested to hear more from you Sarah. So can you tell us a bit more about yourself and your sort of journey in life towards receiving an autism diagnosis? Certainly, I wouldn't say that the autistic identity journey culminates in diagnosis or starts there. I think it's a potentially parallel path if you see that some people go down and some people don't. fairly, I think, standard autistic childhood of having a lot of temper tantrums when I was a toddler, being very disruptive in school, but being very bright, so I was largely able to sort of work my way around it. Having a mother who always strongly stood up for me, but it was very obvious by the time I was a teenager that there was some kind of thing that made me different from other people, therefore had no problem with sort of saying it over and over and over again and then eventually it kind of clicked. really became aware that other people see things differently to the way that I do and that I had indeed offended this man in ways that I hadn't. and it was the light bulb moment for me where this, you know, why am I different? What is different? It made me realise at that moment, oh, it's autism, I'm autistic, right, okay, what do I do now? And then I did probably the most autistic thing that one can do in such a situation, came back in the morning, went to work and said, because I was working in the student disability service at the time, which is what I was doing there, and said, I've realized that I'm autistic and I am extremely sorry if I have been behaving in ways that have been upsetting to you and I haven't realized. And that was the beginning, as far as I'm concerned, of me going, what does it mean to be autistic? What does it mean for the way that I interact with others? What do I need to the strengths and limitations that I have from this perspective of me as a minority within society, which I didn't conceptualise in quite such a way, because it was 2008 and I hadn't done all of the reading and met all of the autistic people that I've met since, but they were still kind of roughly where I started. And the first thing that I wanted to do was to get a diagnosis in order to get access to certain student services at my degree and after four years, of going around GPs and talking to various services and, you know, an application that was made for special funding that like never materialised and that kind of thing. Eventually, in my third year, I went to my mum and I said, we're going to have to go. her, so she gave me the funds to go see a psychotherapist who has now retired and I went to his office in Sheffield and spoke to him for 90 minutes and a month later he gave me a piece of paper that was two pages long saying exactly what I already knew. And another three to four years, or longer, studying in order to get out and do the things that I wanted to with my life. Um, so I didn't want to be a doctor. I didn't want to be a psychiatrist. I didn't want to be a psychologist. I didn't think that being a nurse would, uh, really work for me. And then I remembered that I'd had a dyspraxia assessment when I was 16 to do with this incident at my school and the, um, person had come back and, and, and therapist and that's what I went off and did. Okay thank you for that it's quite a journey and it's quite shocking to hear that to get a diagnosis for four years and then it ultimately led to you going private and getting that very very quickly. Do you think that's still happening to people these days? It's better and worse. It's better in the sense that in and so services are being very rapidly commissioned. And I think that when I was writing to what then the primary care trusts in 2012 issuing FOIs asking them for their autism pathways and the majority of them writing back to me and saying that they didn't have one, that is now completely reversed. I think that nearly every single trust and NHS service in this country knows where they can go. But the problem is those waiting lists are now three to four years long. Is it particularly different if, you know, the service exists but you can't It's gonna take a very long time to get one, even if the service exists now. Yeah, that's quite shocking. Nine months in a private setting. Wow. If you could just tell us a bit more about what autism means and how it sort of presents in people, excepting that obviously no two people will ever be the same and it presents differently in people. If you could sort of define that for us. into a layman what autism is i would see... that it's rewiring. your sensory system that changes how you process incoming information. And that information can be something that someone's saying to you, it can be the light coming in, it can be a thought that you've had, an emotion that you're feeling and the way in which your brain processes that information is different in the sense that autistic people, I'm getting a bit technical now, but autistic people and unusual takes on information because they're able to do that. But at the same time, many of those people also aren't able to filter out certain information and thus lights are too bright, there's too many people talking, my feet feel weird, that kind of thing. And I would say that that's probably the most universal autistic experience that I've ever had. how that manifests in different people is very, very different. Yeah, you mentioned before that you sort of found what you wanted to do. You ended up becoming an autistic occupational therapist. So if you could tell us a bit more about that sort of training to become one and what that role involves. So occupational therapy is a healthcare role that focuses on helping people to improve their and that can be their job, it can be cooking for their family, it can be their role as the treacherer at their local WI and so the role of an occupational therapist is to go to someone and say what is it that you want to accomplish in your life. One of the standard stories that people tell about how to tell the difference between OT and a doctor or a nurse or something is that a doctor might say oh medication to make it feel better and an occupational therapist to go, 'What do you need your knees to do?' If the issue is you need to be able to get around but you're happy to mobilize using a wheelchair, then why go through potentially months of painful rehab therapy or something? It's really about going, 'What's the thing that you need to do in order to allow you to most efficiently accomplish what it is that you want to accomplish in your life?' I think it's really the ultimate client-centered profession. an occupational therapist because I was able to take a two-year accelerated master's in it at a university that happened to be located to where I was living at the time, I ultimately found it extremely fulfilling to be able to go to someone and say, you know, what are your issues, how do we help you solve them. And that can be divided into health and physical health. So physical health which I think is what a lot of people recognise as OTs is things like helping people to mobilise, prescribing equipment to go in the home, to assist people to maintain their independence. Mental health is daily activities, routine structure, how do I build myself up from this low point that I've been at, how do I maintain my mental health. as I worked across the board. mental and physical health, OTs are trained to do both. And then you can. specialise or move around. choose to do pediatrics, some people choose to do older people. primarily dementia, you can end up doing hand therapy, you can end up doing hand writing and SEN children and learning disability, or you can go into generic community mental health, and I went into generic community mental health. And so until quite recently when I stepped up to become a manager of services, I was working as an occupational therapist across a variety of mental health I can spot my own people and so I was really taken aback by how many autistic people there seem to be in those services and so I just gone into mental health because there just aren't that many jobs working with autistic people. directly and ultimately found that where I was was where I needed to be. Okay. And so how long did you end up doing that role for? Because I think you're currently working as an NHS manager. Oh I've been working as an OT across NHS services since 2014. I did mostly locum work because you don't have to apply for jobs and if you've got ADHD that I do you have a habit of just kind of actually worked in like the majority of trusts in London. - And so you're currently working as an NHS manager. - Yes, I currently am a team manager for an 18 to 25 transition team, which is a team that works to support 17 year olds transition from children's services into adult mental health services. That gap can be quite significant because structurally, they don't really have anything to do with each other. And although the NHS Long-Term Plan is really trying because that in itself takes quite a long time with referral from GP and... appointment and the waiting list etc etc. So my goal is to take people at 17 and a half and identify which adult services that they need to go into and then we work with those young people one to sort out the paperwork in the background of what needs to happen in order to make sure that they're all registered and allocated within those services but also the transition work of what does it mean to turn 18 and suddenly you're expected to do all of these things feeling alienated, trying to square circles that they just didn't need to and a not insignificant number of them will say my life has been wasted. And so I would say that the biggest problem for the vast majority of people who don't have a diagnosis is that they don't know that they're autistic. There are disadvantages of realising that you're autistic primarily around like being stigmatised, right? So I wouldn't say that you know, it's, it's an and feeling alone and so much of that starts with yourself internally and if you have spent entirety of your life up to that point being told oh you know why can't you be normal or like being side-eyed for not being normal or anything like that, that does have an effect on you if you've got through that and you're a you know a successful person. Often a lot of people achieve that view that society needed to change its perspective and then everything would be fine but actually people. There's also a lot of internal work that needs to be done as well in order to deal with this trauma that we're carrying as people. I mentioned Sarah that I met you earlier in the summer at Autistic Pride which is put on by the Autistic Empire, an organisation which you founded. So Can you tell our listeners a bit about the autistic empire, what led you to set it up, and what the company does? Yeah, so there's certain limitations to what you can do as an autistic activist in the NHS. It would be completely inappropriate in the role that I do to be going around going, by the way, did you know that you're autistic? You know, I still want to do that and raise awareness of it and make people aware of these things that apply to them do not identify as autistic and we have that on the form, it's not for people. questioning it to people who get it accept it own it are proud and want to do work to support people who aren't there yet. I designed the logo in 2014 so I could have been thinking about quite a long time but we launched in 2018. We're running about five years. We've got people in three different countries, mostly online. We've got people sort of scattered all over the place and yeah we do a variety of things. We sponsor Autistic Pride - we didn't find that it's card two years ago so if you're interested in learning more about the CARD, please visit the link in the description below. to carry an alert card for any reason to give people specific information. if you get into trouble or you have a habit of going on verbal or you need to leave suddenly and leave a reason why, you can carry these cards. The medical alert cards are a concept that have been around for a very long time and so they've been adapted for autistic people. But we found that the cards that existed were very generic. Once you've met an autistic person you've met an autistic person and they just weren't conveying what we wanted to. So we came up after one of our that we do, our big thing at the moment is to A peer clinic. We get lots of people. writing to us or to me personally saying 'oh you know I've just discovered that my niece or like my son or my friend or something has just been diagnosed with autism it's like quite a shock I'd really like to talk to someone about it like could you could you speak to them' and I used to say yes but that's now just quite a drain on my my time and energy so we set up the peer clinic made up of And generally just trying to spread the message of you're not alone and never have been. And is it a charity and is it sort of voluntary? No, that's a really good point actually. We're a company and we are supported by the membership fees of the people who sign up to it. And through the sales of services that we make, things that we sell through our shop, t-shirts. kind of thing. And when we were talking about structure, I didn't want to create an organisation that was beholden to a charity commission. It seemed like we were going cap in hand to deotypicals, and I thought it was very, very important that we were doing that. that was accountable to autistic people and on that basis we are accountable to the autistic economy if people don't know what they're doing they won't buy it, we'll fail. So you mentioned that the company sponsors autistic pride, can you tell us a bit more about autistic pride? Autistic pride as an event rather than a concept of being proud of yourself as being autistic started in in 2005, I think the first one was held in I think the first physical one was held in within a society taking out time to be loud, proud, joyous in your face, walking down a it is not something that is specific to the LGBT prides that we see. There's a significant difference between the two. significant overlap between being autistic and being LGBT. So I think it was very natural. I'm LGBT. It was a very natural movement from seeing how the LGBT community organizes itself for liberation and in terms of campaigns and events and prides and being able to go why don't we do that for autistic people. And there are other prides. There are mad prides and as I said there are black prides and there's been a migrant pride in South London. a lot of autistic people aren't so happy with marching through the streets and so we do it as a public picnic in a park, but there are other prides that are more mobile and they're held all around the park. month generally is June and so I think a lot of events cluster around them but they can hold any time of year and they are held all around the UK and in the world. I wanted to briefly touch on whether you sort of think language is important because I've sort of heard that some people wouldn't necessarily call themselves autistic, they would say you know a person with autism. I mean you've been using the language autistic, do you think that difference is important? of it but my understanding is that it was parents and professionals. saying don't stigmatise my child, you need to recognise them as a person first, and so they said oh, say person with autism instead of autistic person as a way of putting the person first. You know, you're not defined by being autistic, like you're you, you're a beautiful, a sparkling human being. The problem with that is that I am defined by my autism. Being autistic defines how I dress, it defines who I hang out with, it defines what I eat, it defines what I find interesting in my life, it defines how I speak, and so favour of identity first language. What that means is that there is a substantial minority happy going around saying that they have autism or that they have asperger's. And I would never... want to deny those people the language that they use to describe themselves. So I would never say that it's wrong. I would never say that they shouldn't use it. I would never say to anyone that they shouldn't use it but I also understand because I've spoken to several of these people happy with this language, that is what is written on their diagnosis notes. Like, that is what they've been told that they have and autistic people resist change. So if that's the way that they want to conceive, conceive, and see themselves so that it's consistent with what they've been told their entire lives. I'm completely fine with that. But what I say to professionals is, "You can use it. It's not wrong, but it is obsolete." And it does sound to people who are connected to the autistic community like you may not be trustworthy. So bear that in mind when you use it. and that's as in person, person with... You can say person with autism. but you'll sound like you've come out of 2010. And do you really want to do that? Yeah, so it's not keeping with where society is or where we're trying to be. Exactly. I wanted to ask how do you think the world can be more sort of inclusive and adaptable for autistic people, how we can support people and be allies? and it would just be nice if people could just chill and not be asking like you know what do I need in order to like exist like could I just exist. Yeah. and I think that from that would flow a lot. a lot of acceptance. Accommodations are important, but if you only see someone in terms of their needs and not as, you know, people who are just existing around you, who are perfectly fine, normal people, who are just gay. autistic or whatever. like yeah it's all a bit stressful yeah just knock it off so just relax and see people as human beings yeah like I don't want to say like you know oh yeah yeah we're all we're all human beings really there's no meaningful difference between us we're all like one and stuff because that's not true meaningful difference between us and the way that I perceive the world, is different from the way neurotypicals perceive the world, but it's not a problem. And I think if we stopped problem. We'd be able to get a lot further. Yeah. And we're coming to the end of the show, so just really, is there anything else you'd like to say that you haven't had a chance to already? Yes. If you think that you're autistic, you probably are, please visit us at autisticempire.com and you can contact us there, try out our tests, or sign up to speak to someone if you need to. Thank you very much. You've been listening to...

Speaker 1: 
a Colick and it's been really, really interesting.

Speaker 2: 
talking to you, very informative and insightful. So thank you for coming all the way to join us. And that concludes this episode. previous episodes look to all your usual podcasting hosting sites like Spotify...