Autistic Culture & Language

Transcript

Autistic Culture & Language

April 7^th, 2024

Segment 1

Welcome everyone to Today’s Autistic Moment: A Podcast for Autistic Adults by an Autistic Adult. My name is Philip King-Lowe. I am the owner, producer, and host; and I am an Autistic Adult. Thank you so very much for listening.

Today’s Autistic Moment is a member of The Autistic Podcasters Network.

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This first segment of Today’s Autistic Moment is sponsored by The Autism Society of Minnesota, known as AuSM throughout Minnesota’s Autism community. As Minnesota’s First Autism Resource for more than 50 years, AuSM serves the whole state, the whole spectrum, for the whole life. Visit AuSM online at ausm.org. 

Thank you for joining me for the first of two shows during Autism Acceptance Month for Autistic Culture & Language.  In segment 2 Rachel Cullen will be my guest. 

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As we begin Autism Acceptance month, I want to assure all of you in the audience that you are accepted here on Today’s Autistic Moment.  On this podcast Autistics are celebrated as you are.  The network that makes up everyone who contributes and participates in Today’s Autistic Moment knows that Autistic Adults are fabulous in all of the intersectional communities that are part of the family of Neurodivergents.  We agree that the stigmas that you are working through are an injustice.  Autistics should be able to get hired for a job and keep it, excel, and be promoted because of our talents and abilities.  Autistics should be able to obtain affordable housing, get respect from families, friends, and communities. When Autistics fidget and stim, you are expressing what is in your body and heart authentically. Yet, we also know about the long list of misinformation about Autism is one of the sources of prejudice that minimizes you into an existence on a diagnostic criteria.  Today’s Autistic Moment believes that the world can and will become a place where Autism Acceptance is a reality.  That is why this podcast is here for you.

As part of my preparation for this episode, I conducted a poll across my network.  The question was do you believe that there is an Autistic Culture & Language that is unique to Autistics?   There were 70 people who voted in this survey poll.  58 of those voters who voted YES make up 83% of the voters. 84% of Autistics voted YES.  16% of Non-Autistic voters voted YES.  Only 16% of Autistics and Non-Autistics voted NO. 

Rachel Cullen is a non-binary Autistic Consultant in the United Kingdom.  Rachel works with disabled clients of multiple kinds.  Rachel interacts with the many intersectional communities that make up the Neurodiversity Paradigm.  Rachel has been researching their Autistic Language Hypothesis. The hypothesis takes a look at how Autistics communicate with other Autistics as well as allistic people.  The hypothesis recognizes that there is an Autistic Culture & Language that is inclusive of Autistics with low support needs and high support needs.  The Autistic Language Hypothesis does not dismiss any style of communication from one part of the Autistic community in favor of another. 

Following this first commercial break, join Rachel Cullen and I as we talk with one another about Autistic Culture & Language. 

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Segment 2

Philip King-Lowe 

Rachel Cullen, welcome to Today's Autistic Moment. I am honored that you should take time from your day to be with us. And so welcome to the show. And tell us a little bit more about yourself a little bit about yourself and what your what sorts of things you do.

Rachel Cullen

Yeah, so that's a bit of a hard one to start with. About me, I'm Autistic. I'm neuro-queer, which means I identify as a gay well, you know, queer, I think I'm more identified to the queer umbrella than gay now. Yeah, just generally queer but also Autistic and ADHD, which is why the by myself is neuro queer. I have a bunch of other disabilities as well. And I'm currently a PhD student at Kent University. Researching Autistic social communication. A bit about what I do. So, I've kind of been in the field of Autism research since 2016. I've supported a range of Autistic people with high support needs, who have learning disabilities in residential settings. I done research in Autism studies. Yeah, I've been going a couple of degrees longer. And yeah, my kind of my main motivations, my main passions lie in Autistic advocacy. So, I run my consultancy business, which provides consultancy and advocacy on a range of intersectional Autistic experiences. And I also deliver training and talk organizations and stuff like that.

Philip King-Lowe 

Okay, very good. Yeah. Well, welcome again. I'm glad to have you here.

Rachel Cullen 

Thank you. I'm really glad to be here.

Philip King-Lowe 

I wanted to begin by saying to tell my audience that about a year ago, when David Gray-Hammond was on last April, we were talking about his book The New Normal. And we mentioned that we believe there is an Autistic Culture & Language. And Rachel's name was brought up with regards to the matter of language. And there is some conversation that is going on regarding Autistic Culture & Language. There is some controversy as to whether they exist, I tend to believe that they most certainly do. And I'm finding that it is becoming a common opinion within the neurodiversity, and of course, the Autistic advocacy network. So, I want us to have this conversation as we start autism month, because I think we need to establish that there is an autistic culture and language. And later on in the show, as we move through this, Rachel is going to talk about her Autistic Language Hypothesis that she has been researching. Before we can do that, let's begin. Rachel, where can we begin to explore Autistic Culture and Language and how that affects our intersectional communities.

Rachel Cullen

This is gonna sound controversial, but this is gonna sound controversial, but we need to start looking at Autistic people. We need to start looking at autistic conversations. We need to start looking at what's to come in interactions. And when I say that I don't mean an interaction involving an Autistic person, as faces of a lot of research in this in this kind of field has done. I'm talking about looking at Autistic interactions, Autistic Autism Communication. Because we're not going to get a true picture of how Autistic communicate if we're always in this constant comparison with non-autistic people. Which is why a lot of research not only Autism language and Autistic language research, but also just generally more widely across the research playing in Autism, it's always done with the caveat of comparison with normal people. So, when we've looked specifically at what's the language, we've always looked at it in comparison to non-autistic language, which is great for figuring out what's different. But it's not great for working out how Autistic people interact without the need for masking. Without the need for hiding who they are thinking consciously about how they speak, where they speak, when they speak, you know, who they're speaking to, and all of that sort of stuff, which takes up a lot of cognitive effort. We need to look at how Autistic people will interact with other Autistic people, and you know, not just white boys, you need to look at how it how autism communicate in a range of contexts, a range of intersectionality’s.

Philip King-Lowe 

When I mentioned that it's controversial, what I was thinking about was that, you know, we are in a dialogue of with regarding to the the pathological understanding of Autism being a disorder. And then as Autistics we say, we are not diagnosed, we are identified, that's one of the new languages that's coming out now. And that, you know, the difference between the two is that Autistics are recognizing that we are not really disordered, we're just unique. Like any other Culture. And so, like I say, when I talk about the controversy, I'm kind of referring to that particular controversy. Let's begin to talk about Autistic Culture. And then we're going to launch into the language piece. Let's do a little bit more talking about culture, and then move on to language. So go ahead with that.

Rachel Cullen 

Did you want me to talk about Yes. Yeah. Okay. So yeah, so from my perspective, I was I was diagnosed at 13, which, or female presenting people so I'm non binary now. So, I use they/them pronouns. But by the time I was diagnosed, I was I was feminine presenting, which was relatively early for, for female presenting people, generally, this diagnosis doesn't take up until the 20s, if they're lucky. And so, I grew up with a very pathologize model of Autism, I grew up with a very strong disorder narrative, which kind of shaped a lot of my identity growing up, especially as part of the point that like diagnosis. So, for me, I'm very familiar with the as a lot of people, in fact of most Autistic people are very familiar with the disordered narrative of what it's like to be Autistic. But I find that I kind of grew into the social model in terms of understanding about our Autistic Culture and learning that there was actually a community that existened. So, when I was diagnosed, I went through a lot of my secondary school, high school experience, thinking I was the only one in the entire school, the only one in the entire town, the only one in the entire my entire family, right. So, it's very much a black sheep experience. But as I went to university, and I sort of met other Autistic people, because obviously now looking back there were Autistic people, but not identified, didn't know it, didn't want open about it, and then went to university and I went to one of the Autistic social groups that they had on campus, the only reason I should say one of the only groups on campus. And I finally started to meet and interact with people that were Autistic and open about it, and they knew they were autistic. And that kind of launched me into a whole new world of Oh, my God, we talk just fine. We get on just fine. We talk about your interest just fine. I really couldn't. And it was really hard to reconcile, then that disordered narrative with these people that I was interacting with, because from my perspective, I couldn't see anything wrong.

Philip King-Lowe 

Yeah, Yeah.

Rachel Cullen 

I couldn't see like, I spent a lot of time so in my early in my undergrad in my, in my early educational career, I spent a lot of time researching Autism, because at this point, I was like, I'm not Autistic. Clearly, they must have got this wrong. Right? They must have got this whole situation wrong, because I'm nothing like the stereotypes that they were spouting out about the time and you know, we're still talking about good 10 years ago now. And as I said, again, as a female presenting person at the time, I was like, this doesn't. This isn't me. So I actually started to try and get my diagnosis revoked, because I thought they were wrong. And the more the more I looked into it, the more I researched it, the more I was like oh, okay, No, I think I am Autistic. But I think they've gotten this wrong. I think they've got this whole concept of what Autistic people are wrong. And that's when I really started leaning into the idea that that, that it's not a disorder. It's not something because like, up until 2021, I still firmly believed I had a disorder, I still firmly believed that was not something to fix, per se, but certainly areas for improvement, do you know what I mean? And it was only until I really started interacting with Autistic people that I was open about the fact that they were Autistic, knew that they were Autistic, knew what that meant for them. And that's why I stumbled across this whole community of people that were just like me, some, some very different, some very much like me. And that's when I started to rethink and rethink this idea that what if we're just human beings that exist and shocking the world, the way that makes us not happy as such as your preference is not a choice as your No, but like, you know, we, we just move in a certain way, or we talk in a certain way, or we engage with each other in a certain way, or we engage with the world in a certain way. And that, yeah, that kind of just led me down a whole pathway of just sort of making Autistic friends and hanging out with Autistic people. And the more you kind of, I think any Autistic person will kind of make a testament to this, you know, any more you hang out with Autistic people that know they're Autistic. And I do say this because I think that we interact with a lot more people that are Autistic, but don't know it. So, I want to add the caveat that they know that they're Autistic, and they know what that means for them. Yeah. So that you, your perspective shifts. And you found my people, you know, that tribe, everyone says that you'll find that school you'll find a university or you're you'll find along the way, you know, it is a community it's, it's a community of people. And the more you start seeing as a community, the more you start moving away from a very rigid set of diagnostic criteria, that puts everyone into boxes, which is obviously gendered and racial, racialized and classist as well. That you actually start moving away from these nice little neat tick boxes to Oh, wow, there's a whole, there's a whole depth and rich detail of a community here. There are so many different types of people, there are so many different types of like, there's so many different ways to be Autistic. I think, for a lot of people, they're told that Autism is this. And that's what it is. That's all it is. And actually, when you look at autistic people, what you find is that you have a spectrum, not of Autistic people on the Autism spectrum, but you have a spectrum of color, you have a spectrum of interests, you have a spectrum of diversity, that realize that Autism isn't just a static concept. It’s a human is humanity. It's humans, it's its people.

Philip King-Lowe 

Yeah, well, I can't speak to what it is in the United Kingdom. But I will say that part of the problem here in the United States is that to be able to get any kind of psychotherapy, social psychotherapy of any kind, to support our Autistic needs, especially the recovery from things like PTSD, or just the generalized stigmas that really do impact us, one has to have a formal diagnosis. The medical insurance folks here require that if you want to, you know, get seen for that. And also, if one wants to obtain disability benefits to help, which could include things like support services, like having a PCA or a homemaker or someone to, you know, help with financial matters, one must have a diagnosis and it must be declared as a "disorder" which is extremely unfortunate. And that's one of our problems. Yeah, what I see happening is, you know, to repeat what Daren Howard said on my premiere episode of this season, Details & Practices for Autistic people to be Employed. He said, "Celebrating Neurodiversity is not a denial of disability." And I think we need to remember that. And that's one of the big problems this is again, where we have this ableist culture that seems to say, if it's not a disorder, you don't need disability, you know, and the thing is, is that some of us do, we may have other intellectual disabilities if you say, but that's because we have a culture that wants to make second class citizens out of people who are unique, if you say. So, I would say that has a lot to do with why we're having our, our challenges with identifying Autistic Culture. Let's, let's move on to the language piece. Let's talk about Autistic Language. And by all means, here's where you can start to talk about your Autistic Language Hypothesis.  Go ahead.

Rachel Cullen 

Oh, well, I'm gonna before general just gonna pause before I get into that, and kind of caveat this topic by saying that I think Autistic People know and have known for a while that we speak differently, that we engage with language differently. Now, it's a big part of the diagnostic criteria, a third of the diagnostic criteria. So, we know it's evident, we know it's present. In terms of how that's been perceived by the medical community, it's been conceived, it's been perceived as a disorder. So, there are markers of things that we do with language that don't meet the neurotypical standard. Hence, why it has been classified as that we have social, specifically a social communication disorder. I don't believe that. I think that not an accurate reflection of what's actually happening. But I can understand, and I want to caveat, this was saying, I understand why and how we've got to this point. But it's not the way that we should be continuing. Because when you have the neuro-monopoly, as it were, non-autistic people have been at the forefront of research, they have been at the forefront of investigating Autistic differences for a long time, that's only now just starting to change. And from and from a, you know, from an Autistic point of view, so we would just reflect this really quickly, and we were looking at non-autistic communication and comparing it to our language system, we would find differences as well. However, would we classify that as a disorder? I don't know. But the idea is, is that I'm going to try and move away from this language of disorder, and not saying that we have a correct communication system and don't have to sit down, or the Autistic people have incorrect communication system, and non-autistic people don't. It's not about trying to say who's right or who's wrong. It's about understanding that communication is diverse. And it's cognitive. And it's multi-dimensional. And that people can engage with language in different ways. And it's not about being right or wrong, or socially correct, or socially incorrect. It's about understanding what the differences are and how we can work best with all the kind of communication styles rather than saying that it doesn't work the way it should. How do we fix that? Does that make sense?

Rachel Cullen 

So, my kind of PhD and I've kind of been talking for a couple of years now about this concept called the Autistic Language Hypothesis. Now, I've probably think that's going to change his name over the course of the next sort of couple of decades, as it morphs and changes. And as we kind of look into this idea further, but the central idea that underpins the Autistic Language Hypothesis is that Autistic people have a unique communication system that's developed for social interaction with other Autistic people. It's not a disorder, it's not a deficit, it's just a difference. And I fully believe that this works in maybe a different way. But the same idea essentially, underpins nonspeaking Autistic people as well. So, this isn't just limited to verbal Autistic People. I certainly believe that if we understand how verbal Autistic people communicate at a programmatic level, then we could use that to inform the way that we create and make resources for nonspeakers that could facilitate the communication. Now, when I say that, I don't mean getting people to talk. I don't care about people talking, I don't care about people speaking. I talk about people having access to communication tools that work for them, they get their needs met. So, the central idea is that we have a social communication system that's kind of very different, but essentially functioned in the same way as non-autistic people in the sense that it's used to facilitate social interaction between Autistic people, okay. But that it shows up very differently. That when you when you're in that comparison between Autistic and non-autistic people. So, I'm kind of trying to aim for understanding because I think that's a big thing that we're missing in our communities is that we know what doesn't work is in that we know how we're different from non-autistic people that's been done to death and researchers been very meticulously research how, in all the ways that we're different from non-autistic people. But what we don't have and what I think the Autistic community are in desperate need of is practical tools to live as Autistic people. So, we know we're not non-autistic people, we know that we know that we don't behave or interact like non-autistic people. But how do we interact and communicate outside of a disorder narrative? Well, that's the part that I'm, I'm trying to change. So, the idea is, is that I think we have a unique system of communication in you know, verbal communication, social settings. And I think that not only is it different, but the facilitate effective communication with other Autistic people. So, they'll sort of taking one example, literal interpretation of language. I don't think that's a disorder. I think that's purposeful. I think it's meant to be there. I think it says something, I think it's how we communicate. We're very, very word focused, we're very particular about the words we choose, rather than the overall vibe of what we're communicating. If that makes sense. We're very, we're very specific. With our words, there's not much room left for interpretation. There's not much vagueness. And I think that's purposeful. I think it's in tentful. And I think it's part of our language system, but so far has been classified as a marker of a disorder, a language disorder, specifically related to Autistic people. But I think if you're diagnosing a whole group of people with a specific language conditions, such as literal interpretation of language, then that's not a disorder. That's a feature of something. And then you look at that in relation to the other language features such as, you know, you've got like literal interpretation, you've got monologuing. Not speaking at the right time. So, you know, a kind of neurotypical talk about waiting for the pause, and we just kind of jump in and overlap and interrupt each other. Things like that, when you when you look at their status, there's much more than that. But I'm just kind of using it as an example, to look at them, rather than looking at them as isolated, disordered bits of language and you start looking at them as a whole picture, you start seeing what amounts to a functional system. But we don't know what that looks like. So, what you were saying earlier about, well, we don't know what Autistic Culture looks like, because it's such a heavy, disordered narrative. That's the same sort of thing I'm trying to do with language and sort of move away from this idea that we don't talk like we should call right. That's your opinion, my opinion, is that there's no such place for should? It's what is it? How does it work? And how can we use this to help Autistic People get their needs met. Essentially.

Philip King-Lowe

Yeah. Yeah. Thank you for that.

After this next commercial break Rachel will talk about having conversations within the Autistic community about Autistic Culture & Language.  Be sure to listen when Rachel share their thoughts about why those who want to keep Autism as a disorder are working against recognizing Autistic Culture & Language.

Commercial Break II

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Segment 3

Philip King-Lowe 

Um, how can we engage the Intersectional Autistic Adults Communities, to have conversations about Autistic Culture & Language? This one's a challenge to answer. Because we have to ask ourselves, are we talking about having conversations about Autistic Culture & Language that works and how we interact with other Autistic individuals? Or are we talking about having those conversations about Autistic Culture & Language, for those who are not Autistic, that we might begin to help them? Talk a little bit more and maybe, maybe begin to see that there is an Autistic Culture & Language. Go ahead and respond to that.

Rachel Cullen 

So, I think it's both actually, I think it's we need to have conversations that are in community, but we also need to then work out how to have those communities with people that are not Autistic. So, I'm going to start off with the first one about, we need to have be having these conversations within our community. First things first, we need to be having these conversations in the community. If we're going for an intersectional approach, then we need to be thinking about how, where and who we're having these conversations with. So, there's a heavy emphasis at the moment, I feel that a lot of verbal low support needs Autistic people are kind of taking the floor for advocate on advocacy, like the mainstream advocacy, sort of movement at the moment, is very much centered around low support needs verbal autistic people who have a relatively relative degree of independence. And I think what we're not seeing in the conversation, or people that use communication devices. What we're not seeing are people in services who have very high support needs. So, I think, you know, and again, obviously, you'll see people with color, disproportionately to be affected by the criminal justice system. And there are there are lots of factors in this that you know, in order to be truly intersectional when we talk about having these conversations, the content is one aspect of it, but that how the how we engage in these conversations is just as important. So, you know, are we making an effort to talk to people that use communication devices like AAC or pecs, pecs our picture exchange communication system, so you're swapping it out. Um, I mean, because like, yeah, we talk about Autistic Language & Culture. Well, these people are a part of our culture, and they're part of our community, but they're excluded from the conversation, partly because of how we're having this conversation, but partly because of where we're having these conversations. From my experience of supporting people in services, not a lot of people in services who are fully able to engage in these conversations have access to things like the internet. How about not because they don't have access to the internet, but because they're not, you know, they're there, you know, there's YouTube, go nuts, go nuts for half an hour. And that's, that's the end of YouTube time. It's, you know, we're not, we're not, we're not reaching people that don't have access to things like Facebook, and Instagram, and YouTube, and all these sort of things. But very much still part of the conversation, in fact, anything probably have more to give to the conversation, because of their unique experiences. So that's kind of the, the how, if you like the how the conversation and thinking about, you know, to be truly intersectional we need to think about how we're engaging in our communication. You know, it's very good mean, you having a verbal conversation, but you know, how does that work for somebody who uses spelling as formal communication? And things like that? And, yeah, so, so kind of making sure that, you know, it's not just that we're having these conversations, but it's how we're having these conversations, I think, are equally as important because otherwise we could be missing out and leaving out, excluding purposely not intentionally, but purposely excluding people, by the way that we choose to have these conversations in the way that we choose to have these conversations.

Philip King-Lowe 

Yeah. And I would like to just talk briefly here too, about the fact that our intersectional communities include other multiple neurodivergence. Which includes ADHD, which includes dyslexia, which has its own, I'm sorry, dyspraxia, dyslexia, sorry, dyslexia, which also has another language component. And so, our languages are also part of the wider Neurodivergent communities especially, so you know, a lot of us who are Autistic are also ADHD and dyslexia or dyspraxia, and that sort of thing. And, of course, our body language, which is stimming. Sometimes that's part of our language. And so, I think we need to leave some room here, that the Autistic language is part of the Neurodiversity Paradigm. And that again, we're going to intersect with the other Neurodivergence that we happen to be in, in, in a culture with. You want to talk about that at all?

Rachel Cullen 

Yeah, so obviously, that that is to make my job harder. Doesn't say anything into nice little boxes for me. But that's okay. Because as you said, I've got my friends that Autistic and like I say, dyslexia and other comorbid language conditions are quite common in Autistic people as well. Things like OCD as well. The impact, again, how we communicate, although I need to be careful here, I need to be careful because there is a distinction between unconscious communication and conscious communication. So, for example, like disorders, like dyslexia are completely subconscious, you don't think about oh, I'm mixing these words around like that just it just happens, right. But in terms of like, things like that, in terms of adding to the how we have conversations, having things on like different colored papers, like you can put information on. Like different colored paper overlays, like blue paper works quite well for people with dyslexia, having the page color, not white. And also, do choosing certain fonts when you're using written information as well that can also go towards making communication accessible. For people that Autistic can also multimedia are divergent and have obviously other conditions that affect language. Schizophrenia is another one. Schizophrenia have a very similar language profile to people who are Autistic. It's not completely overlap, but there are definitely features that are other similar tools to manage profiles. idiosyncratic, idiosyncratic, idiosyncratic language is a big one. But also, the same. There's very similar pragmatic differences. So, think about that. But yeah, I think you know, we need to include when we talk about autistic language and culture, obviously, we need to be mindful the fact that you know, I don't think any Autistic person ever just is Autistic. I find to be a unicorn.

Philip King-Lowe 

Yeah, that's fine.

Rachel Cullen 

So, I think we absolutely need to be mindful and centering the idea that it's not just Autistic people. It's Autistic people plus in extra here.

Philip King-Lowe 

Yeah, yeah. Yeah, I do feel like the Neurodivergent and communities are moving in the same direction as the LGBTQIA+ communities. We are definitely moving in that same direction. We just haven't completely figured out our alphabet yet.

Rachel Cullen

I think it would be the is the entire alphabet if we do.

Philip King-Lowe 

I do too. Yeah. Yeah, absolutely. Yeah. I say that because like I just, you know, when I first came out in the in 2000, you know, we were still using GLBT. And most people were just talking about gay and lesbian that is, at least around here they were. And then, as time moved into the 21st century, we started seeing LGBT. And then we started to really making room for pansexual, intersexual, asexual, and all these things. And from that has come the rest of that alphabet. And I say, I feel that, you know, the Neurodiversity Movement, the Neurodivergent folks, we're moving in a similar direction. We're just working on how we begin to; I want to say interact, find community within those other forms of Neurodivergence. I mean, I happen to agree with you about that. Now that we have explored Autistic Culture & Language, and talked about how we can get Autistic Adults engaged, how can we empower them to become proactive? In advocating for Autistic Culture & Language? And I know this is a complicated question. Part of my job as podcasters is ask these difficult questions so we can probe deeper into them. But the thing is, is that when we talk about empowering, I want to start by saying that part of our empowerment comes from what we're talking about during April, about acceptance and in that acceptance comes acceptance of ourselves. And so, and what I love about what you said so far is what I what I have discovered since I started doing Today's Autistic Moment is that when we Autistics find each other the language barriers disappear. Now we're talking about Autistic language again, anyway. But the language barriers just disappear. We now when we say, I was in this restaurant, and the music was so loud, people were talking so loudly, it literally bugged me. And once nobody is gaslighting us and saying you're wrong, nobody's saying, you know, you shouldn't feel that way. People are saying, Yeah, I know exactly what you mean. And so, you know, that's one of those places where we can feel empowered, is to know that when we're in conversations with other Autistics, other neuro divergence and other communities we intersect with, it's understanding one another in a way that is understanding when one another in a way that quite frankly, non-autistic people just can't, or, or that sort of thing. So, if you would, please comment on that. And let's see where this takes us.

Rachel Cullen 

So, I think for me, empowerment has a slightly different connotation. Because I think you're right, empowerment is having people exercise their strengths, but from my perspective, and again, so kind of touching on the language side of things here. We don't know what our strengths are. Because we don't know what our communication system looks like outside of that sort of narrative, right? So, in order to have strength and empower ourselves to advocate for ourselves, we need to know what it is that we're advocating for. So, for example, you gave a really good example about the oh, that restaurant was really loud and people just going oh, God, don't, don't waste your time. I understand. Because with a non-autistic person, you might have to elaborate on why it's difficult and why that's affecting your functioning and you have gone a big, long spiel about you know, in fact justifying why you need to take a sentry break or why you need to not go to those environments, right? Whereas when it comes to advocating for yourself, so your communication could be a double barrier. So, you know, they could turn around, you could explain yourself perfectly well with the with the restaurant example, and someone still be intent on misunderstanding you. So, with the best in the world, you can empower yourself in that situation, advocate for yourself, and then you're around other trusted people who get it. But if you don't know, for example, in going back to the undiagnosed population, if you don't know why the lights caused you problems if you don't know why the sound of the fan or the sound of people's cutlery or the sound of people talking irritate you, how can you empower yourself to make the decision to leave that environment? And be justified in that? And not just feel silly, because everybody else was fine, right? So, I think when it kind of comes to Autistic communication, this is why it's so important to work out what the communication actually is, what it looks like, how we use it, how we engage with it, because at that point, we could then start learning. Okay, so when Autistic people communicate and have a preference for this style, how can we adapt things to kind of fit with that? And I think when you say about, well, the language barrier sort of disappeared, when we when we kind of all kind of get together and have a conversation. I don't think they disappear entirely. But I think it's significantly reduced. I personal experience, academic and professional experience tells me, and I've seen it from you know, your lived experience that it doesn't display communication, that barriers don't disappear entirely. But they're not as evident as when you're talking to non-autistic people. And I think partly that comes into social status and social power. So normal people have never been shamed have never been told they're wrong have never had their identity their being questioned at such a fundamental level of why do those lights? No, they don't. Right. So, when you meet your human, you kind of start meeting up your community and you kind of have that shared trauma, that shared experience of invalidation, gaslighting. It's you it were quicker to overlook the miscommunication barriers, because we're much more understanding of because we ourselves have been on the receiving end of No, that's not what you meant, or that's not what you said, or hear that one would a lot. That's not what you said. That's not what I meant about all those sort of fun stuff. That actually when you're on the receiving end of that for majority, if not all your life, when you find somebody who actually gives you the time and space to go, no, please elaborate, or please explain further or No need, I understand that you're less likely to pick up on those micro cuts that you get in communication with because that invalidation just isn't there, because there is that shared understanding that shared experience.

Philip King-Lowe 

Yeah. You know, I was recently in a conversation with somebody when I was trying to explain, you know, about Autistic people say, versus, you know, the pathology and all that. And at the end of that conversation, someone said, but it is a disorder. And of course, because it's, you know, on the DSM it is Autistics. Good, well, let me let me finish by saying that, that was one of those instances where I found it a little bit more complicated. But yeah, I'm bringing that up for you to comment on that. So go ahead.

Rachel Cullen 

So, my perspective, was that going back 50 years, my sexuality would be considered a disorder. It's not now. Of course, it depends on where you go. Depends on where you go. But for the for the, for the majority of the Western world. Me being gay. Sort of go back 50 years, it was. So, in response to people go well, it's a disorder. The DSM five says it's so used to say queer people and gay people were a sexual deviant.

Philip King-Lowe 

Yeah, yeah, absolutely. Yeah. Well, yes. I think part of the issue though, is that, you know, I recently said this in my conversation with Nigel, regarding Emerging Autistic Women. I think it's worth repeating. Again, that part of this issue that we're having and continuing to have, has to do with society has always had a "hierarchy of what is normal versus abnormal." Because our cultures have this gendered system of male and female, they have this gendered system, I'm sorry, this culture of, of straight being normal, and, you know, LGBT, LGBTQ, whatever being abnormal. And the same goes for a lot of Neurodiversity, because the Neurodiversity Paradigm, which was created by Dr. Nick Walker, who has been a guest on Today's Autistic Moment. By which we sit, now we are saying that, you know, even being neurotypical, is also a Neurodiversity we're making which by which we're saying, you know, there is no normal versus abnormal. We're just all, you know, diverse in that. And part of what we are encountering with the pushback has to do with the fact that we're asking people across the globe across all cultures, languages, abilities, etc., to learn to accept that. Differences do not necessarily mean better or worse than or whatever. We're just saying, We'll kind of all exist in, in a in a continuum, as we say. So, you know, that's one of those things that I think we need to I think it's worth talking about that some. So, I'm just saying that to say, this is why we're getting the pushback with all of these things, particularly in the United States, since we've been having so much conversation about gender-affirming care here, but it's been just devastating to a lot of the Autistic community, that sort of thing. So, if you have something to add to that, please feel free to

Rachel Cullen 

First of all, we support our trans brothers and sisters. Absolutely. Second of all, I mean, we're all just a bunch of furless monkeys on the planet in space, but around the rock. So like, what, are we better than the aliens? Two galaxies down? Are they better than us? No. We're all just humans that are all personating, the same experience, very different experiences. So yeah, I think but I think it's also important to note some context here. And the context being the society wasn't always this way. Capitalism has definitely emphasized and brought out those differences and capitalism. But what I'm what I'm really wanting to make a point of is that Autism intervention, as an industry is worth billions, billions across the world, right? So, we are a money-making machine. Okay. There are organizations, there are companies, there are groups of people that benefit significantly from us being a disorder from us having broken humans, right? The same way that the criminal justice system benefits from labeling people as criminals, and not talking about poverty, not talking about race, not talking about the systemic issue that that led to the industrial prison complex, right? That we're not, we're not, we're only seeing a snippet of where we are now, but without, you know, contextualizing that's how we've gotten here. And I think it, it benefits people. Certain people. To keep peddling the disorder of narrative, especially behavior interventions, and I'm not going to go down a rabbit hole about those. But people benefit financially, from us being in need of fixing. Same way that conversion therapists benefit off of queer people, right? By peddling the idea that there's something wrong, there's money there, there's money to be made off of people that are broken. The same way about mental illness, oh, you know, you need you need 1000s of pounds or dollars. For you guys to have mental health treatment, you need to pay for that 1000s of pounds to get access to a therapist if your insurance doesn't cover it. You need to pay for insurance to get access to these, as you mentioned earlier, or the support in order to get the support that you need. You need to get the certain diagnoses in order to access those things because they cost money. And there's money to be made off our backs. We are to be exploited because there's something to be said about classifying humans in such a way that you can exploit them. It's gone on throughout history and capitalized capitalism is a system built on categorizing people to exploit them for various means resources, labor, money, whatever. Right? And so, I think in terms of the push back, I think we need to I'm not saying it's all financially motivated. That's obviously not the case. It's not a true reflection of the push back. But I think you've got it's a combination of factors. I think money is definitely a big driving factor because just think about this for a second, right? If you declassified Autism, Autistic people, sorry, and you declassified things like ADHD and you declassified things like you know, bipolar, schizophrenia, and you said there are conditions that need to be treated or they're parts of people's identity that need to be treated in this way for the comfort of the individual, not the people around them. So, you know, there's this thing about schizophrenia in Western countries, their voices are The hallucinations are very negative, very demanding very, like, you know, very violent. Whereas in African countries, they're like, they're different. So, they're still hearing things, they're still seeing things. They're still having the characters from schizophrenia, but the voices are like, offering. So, they're like, they're very different in terms of the way that the symptoms manifest. And so, I think, you know, if we, if we just took the DSM-V, and just pinned it for like five minutes, and said, humans aren't disordered. Humans aren't correct. Humans are humans, how can we best support you, in your endeavor to human throughout your life? Then I think you then get rid of billions in industries. You get rid of Autism interventions. You get rid of National Autistic societies. You get rid of charities. You get rid of beneficiaries. You get rid of; you get rid of research panels. You get rid of you get rid of a lot of things that bring in a lot of money.

Following this final commercial break, Rachel will give us some references to online resources about Autistic Culture & Language.  Immediately following that will be Today’s Autistic Community Bulletin Board.

Commercial Break III

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Future Shows

The next show during Autism Acceptance Month will be on April 21^st.  Holt Mills from Minnesota Independence College & Community will join me for An Autistic College Student’s Story.  Holt will tell us about his chosen major, and what being educated at a college and community that accepts him as an Autistic has prepared him for the career and challenges of his life going forward.  Holt will also share with us what graduation in May means for him.

The shows coming up in May will be Post Traumatic Stress Disorder & Autistic Adults.  Anger Management for Autistic Adults.  June is LGBTQIA+ and Autistic Pride Month.  Daren Howard will join me on June 2^nd for The Autistic Bisexual Experience.  Oluwatobi Odugunwa will be my guest on June 16^th for The Autistic Black Nonbinary Experience.

Check back to the Future Shows Page on todaysautisticmoment.com for updates about shows up coming.

If you would like to offer to be a guest, go to the Be My Guest page on todaysautisticmoment.com to fill out the Guest Intake Form.

If you have any topic suggestions, please go to the Contact Us page and submit your ideas.

Thank you for listening to Today’s Autistic Moment.

Segment 4.

Philip King-Lowe 

Rachel, do you have any website suggestions where people can do some reading up or reading up about Autistic Culture & Language? Do you have any recommendations about things like that?

Rachel Cullen 

I do. So, I will send you a link to this stuff when we're done. So, you put it on your, on your socials and everything. So, there's a video on YouTube that I did with Aucademy which has an Autistic run platform 21 that basically goes over the basics of my Autistic Language Hypothesis. It also has in there some practical tools that you can use from the off, potentially. But again, I need to caveat this by saying it's not peer reviewed research is in the process of being researched. If it works for you, it worked. If it doesn't, don't worry, I'm going to be spending my lifetime researching this. But I just thought it will give people a really good idea. I think it's really accessible. But obviously bear in mind it was done three years ago now. So obviously things have moved on since then. But I think it's a really good place to start for people to want to learn more about their language for certainly, certainly, I should say. It's from my perspective, so I think it would give people an insight into Autistic language. From my perspective, that's not to say it's correct did not say it's accurate is to say that that's my take on it currently. But people have found that quite useful. So go and check that out. There's also a Tik Tok video which I'll also send you a link to A which kind of summarizes it in 30 seconds. If you're like me and you don't got an attention span to sit down and watch an hour and a half video, there's a tick tock summary. There's like 30 30 seconds to a minute long so that might be more useful for people with shorter attention spans. And I would recommend them checking out or Aucademy platform, the academy platform. So, it's an Autistic, lead and run education platform, which shares and talks about his experience is based in the UK, but they do have speakers from all around the world. They you find them on YouTube, Instagram, Facebook, is run by Dr. Chloe Farahar and Annette Foster, they're brilliant. And they have a range of guests on a range of content on everything in anything. So specifically related to Autism spirits and intersectionality as well so definitely worth checking them out. And obviously, you can look at my website, cullenconsultancy.co.uk website and my social media, if you want to keep up to date with like the PhD and the research and kind of what I'm doing this because I do like various training and stuff like that. So, you can just follow me and keep up to date with what I'm doing. And kind of more broadly, just where the research is going really.

Philip King-Lowe 

Yeah. Um yeah, I would also like to encourage you if you haven't seen it yet, and my audience. Karen Tim, who was on my show about Education for Autistic Women, introduced me to a language that comes out of New Zealand called Takiwātanga. This is done by Jolene Stockman, and they have developed a talking about Takiwātanga "In your own in your own space and time" which is a whole vocabulary of words regarding Autistic people. And what I love about what Jolene says in there is about you know, if you look up the word Autism, it very rarely brings up positive thinking. And so, this Takiwātanga is something that they've developed so that we can have actual conversations about how being different is an advantage. Not a not something to be fearful of. So, I don't know if you've seen that. But I want to encourage you to look up the name Jolene Stockman on YouTube and listen to some of the things that she writes, and I do believe that you will find it. I found it uplifting. I'm one of those things that wouldn't have been one of those days when everything just seems to go badly. That's one of those things that can be very uplifting. Rachel, I want to thank you for being here today to talk about this topic. And as often happens with my guests, we get lost in many different kinds of conversations. But this conversation about Autistic Culture & Language in particular, your Autistic Language Hypothesis, I think it does lead to conversations that we need to be having more of, within the Autistic Community and with our neurotypical people in our lives. So once again, when Rachel sends me those links, they will be made part of the Adult Autism Resources Links Page, which you can always find on todaysautisticmoment.com. And you can always click on those links and of course, find your way around them. But for now, let's say thank you to Rachel Cullin for being here today. And by all means, as you update things, please let us know. So that we can, you know, see how you're doing with all this. So, thank you so much for all this.

Rachel Cullen

Thank you.

Philip King-Lowe

You're welcome.

Transcribed by https://otter.ai

Today’s Autistic Community Bulletin Board

All of these events and many others with their links can be found at todaysautisticmoment.com/bulletinboard.

Go to autisticwomenemerging.org to read about the AutisticaPalooza conference that will be held on October 18-20^th, 2024 at the Marriott Denver South in Denver, Colorado.  Tickets are now on sale.

Join The Autism Society of Minnesota for their Adult Coffee Club. The next Coffee Clubs will be on Tuesday nights from 5pm to 7pm at Dogwood Coffee in St. Paul on May 7^th, and June 4^th. Please RSVP at ausm.org.

Understanding Autism virtual classes will be offered by The Autism Society of Minnesota. These classes are perfect for Autistic individuals, caregivers, those who want to understand the basics of Autism and support Autistic people. The next class will be on April 8^th from 10am to 12pm.  Classes are free of charge, but you must register to attend.

Register today and attend the Minnesota Autism Conference to be held on April 17^th through the 19^th at the Hilton Doubletree Hotel located at 2020 American Blvd. E. in Bloomington, Minnesota. Keynote speakers this year will be Dr. Paula Kluth, Dr. Devon Price, and Joyner Emerick.

Steps for Autism will be on Sunday, May 19^th from 9am to 12pm at ROC at the St. Louis Park Rec Center located at 3700 Monterey Drive in St. Louis Park, Minnesota.  All of the funds raised at this event stay in Minnesota for the Autism Community. 

Go to ausm.org to get more information about these and other social and educational events, counseling services and support groups at The Autism Society of Minnesota.

MNeurodivergent is a social club rooted in a vision of bringing Neurodivergent Minnesotans together to build meaningful connections.  Its core principle is to foster an environment where all are treated with dignity and respect regardless of ability or preferences. Go to the bulletin board at todaysautisticmoment.com and click on the Meet Up link to become a member and attend their events.

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Thank you for listening to Today’s Autistic Moment: A Podcast for Autistic Adults by An Autistic Adult.

May you have an Autistically Amazing day.