Episode 17: Yes, we still need labels!
Courn: Welcome to Neurotakes. This is Courn.
Chase: This is Chase.
Courn: Let's get into it!
Chase: So, you got your finger on the pulse? What's going on in the autistic community these days?
Courn: Yeah, I mean, what's not going on?
Chase: Well, you're the correspondent specialist, speciale, so...
Courn: I just, yeah I am on social media. I'm chronically online. So I always know when stuff's going on.
Chase: Tell us more.
Courn: But yeah, there's a very popular autistic creator whose named Chloé Hayden. They're in a popular show-
Chase: Named right off the bat!
Courn: I will name them because I think they need accountability and they glossed over this. But they've done actually a lot of things in the past that have been called out. But on their stories, someone asked them what they thought about support need labels. I think that was the exact wording. Maybe it was levels, maybe it was levels and labels. But they did this like little short paragraph that a lot of people screenshotted where they essentially just equated labels and levels as the same as functioning labels. So they were like, oh, high and low functioning labels, those were, you know, created by a Nazi, that's Asperger's, which also, yes, functioning labels are weird and have a lot of like questionable roots, but that's also just not what they were asking and equating the two was actually really dangerous. And then she's kind of like skipped past it and was like, oh, I don't like that I'm diagnosed as low, you know, level 1, low support needs because that's not how I feel. And okay.
Chase: It feels like weaponizing the like therapeutic language.
Courn: Yes.
Chase: Okay.
Courn: It's also just this is a very common like narrative we hear as well. A lot of low support needs people being like my supports aren't low and like we get it, low supports doesn't mean no supports.
Chase: Yes.
Courn: Okay.
Chase: Yeah, for sure. I’m following.
Courn: A spectrum of things comparatively. But what happened after was a lot of medium and high support need autistic people actually like directly messaging her and leaving comments and being like, hey, this was actually really harmful that you said that. You don't even, you're using the wrong terminology and you're equating two things. And instead of addressing it, she just blocked all those people. And a lot of those people, yeah, are high support needs. There's also a lot of people of color in there as well.
Chase: So was her issue that she didn't like that she was labeled low support needs?
Courn: It seemed like the issue was that she just didn't like any labels or levels at all.
Chase: Of like needing support, period.
Courn: Yes. Like she was just like, I don't like the idea of labels.
Chase: That also seems really ableist!
Courn: And then she just uses low functioning and high functioning to describe that, which wasn't the question asked.
Chase: Okay. What was the question originally asked? Do you know?
Courn: I think it was like, do you, what do you think of support need labels or levels? I can't remember which one it was or if it was both, but it wasn't about functioning labels. It was specifically about support needs.
Chase: Right, and support needs are very different than the functioning labels?
Courn: Yes!
Chase: But are functioning labels real?
Courn: I mean, some countries actually will assign you functioning labels and they have been used for a long time, low or high functioning, but we know they're pretty problematic just because what is the functioning standard? It's against allistic people, right? Which is the problem. So it's like not used a lot. So people use you know low, medium, or high support needs and this is like actually some countries actually will diagnose you like with low, medium, and high. It's more rare. We're in the US and Australia uses that well. It's the DSM-5 so you get diagnostic support need levels, but that's different than labels, which can be really confusing because they sound the same.
Chase: They do sound the same and I really was confused when you first talked about it. So you're talking about support needs versus functioning, which is not a good thing to use?
Courn: That's a separate thing. But yes. So that's the first part of the thing is saying, we're talking about just labels and this isn't something that's diagnostic inherently. There's functioning labels, which are problematic to a lot of people. Some people defend them. I'm gonna say no comment. I don't like them. I don't like calling someone low or high functioning.
Chase: So again, it's always compared against the standard and we try to like not use language about that here just in general like normal.
Courn: Yes! While support need labels, the goal is to center what your needs are. What do you need to be successful? Whatever those are.
Chase: Or even survive.
Courn: Yes.
Chase: Not even like comforts. Let's just talk about survival with that. Right.
Courn: Yeah. There's quite literally things you need to be a person and have a healthy life.
Chase: You need support to have those things to survive.
Courn: Yes. And those are quantified by low, medium and high. And some people will use that to refer to their diagnostic level, which is what you get if you get formally diagnosed with autism level 1, 2, or 3, if you're in the US or Australia, and they use the DSM-5, that means requiring support, requiring substantial support, or requiring very substantial support, which doesn't sound very helpful, but there is specific examples and they're in the two categories of social communication and restricted repetitive behavior. So that's just two categories, but those are the two main ones that people think about diagnosing autism. So the reason why people now switch to using a lot of labels while also saying their level is that labels maybe include a wider set of information. Like they're self-imposed, community-based labels, while levels are doctor diagnosed, they may have a lot of bias in how they're interpreted depending on how that professional interprets that criteria.
Chase: Okay. So you got the diagnostic level label, then you got the support needs, which is self-chosen?
Courn: Support need labels. So they both can be called support needs. So they could be support need levels versus support need labels. And that is-
Chase: Needs versus labels! Okay, okay. One's more diagnostic and the other one's just kind of like self-applied.
Courn: So like, yes, so inherently like levels are, you know, pathologizing. Like they're based on criteria, for good and bad. Like that can be used to get your resources and things like that. Labels are self-imposed, but there's a lot of power there. A lot of people are self-diagnosed.
Chase: Right.
Courn: Like myself!
Chase: And you can literally just choose kind of where you fall within that based on how you feel.
Courn: Yes.
Chase: Your experiences are. Okay.
Courn: Yeah. And I think they're helpful in that regard just because there's a lot of different needs that autistic people have. Like I don't have that many support needs when it comes to communication. That's somewhere where I'm inherently level 1, but in like restricted, repetitive behavior, like my eating disorders, my sensory issues would definitely put me in the level 2 criteria.
Chase: Okay.
Courn: So, that's why I'm like, oh, I'm low support needs, but-
Chase: Overall, but it's kind of within each category. You could have different things, high, low, 1, 2, and 3.
Courn: And that's why there's a lot of critique because like the levels aren't the best, they are interpreted with bias.
Chase: And they don't equate to the high, medium and low, right? Like essentially it's not just like 1 equals low, high is 3, etc.
Courn: No, but some people use it like that. A lot of people actually use it like that, which is fine if you personally do that, but it is important to have that distinction because they are separate things and that's not for the purpose of saying, oh I got mine from a doctor and yours are self-imposed so they don't matter. That's not the point. The point is to say that like actual levels can give people access to resources, for good or bad. And overwhelmingly that is medium and high support need folks. Now having that level or label doesn't inherently mean you're going to get resources. We know tons of medium high support need autistic folks who go their whole life without resources, even having that diagnostic label. So that's kind of like the case of like why these levels and labels are really important. Some people, low support need, people will argue that, oh, they divide us, but actually like they don't just divide us. They actually create an opportunity to see the spectrum of autism and identify those most marginalized. And maybe there'd be a better way to do that. But that's the system we live in. And I think the issue for me is a lot of people equate the support needs of low support autistic folks as the same as high support and autistic folks when they are quite different.
Chase: Yeah. You want to go into how they're different?
Courn: Yeah!
Chase: Like an example maybe?
Courn: I mean, and like this is, okay even between each like level and label, it is a spectrum. But just like as a low support need person, a lot of, I think, the discourse comes around like getting accommodations for work. That's a big thing. Like being able to communicate via email, skipping out on video calls or getting increased deadlines. Where honestly a lot of high support needs could mean using an AAC device, having a full-time caretaker, having someone assist you in daily tasks, it is a completely different ballpark. So I think it's frustrating for me. Like we don't have to compare these, like in an ideal world, everyone would get the supports they need, but saying that these are the same, or like being upset that like, oh, I don't get my work accommodations, but you know, high support need people are getting all of this care and it's like, it's different care and like, they're both important. It's not a pie. It's not like because they get resources, you don't get any, like people kind of have this misraged, misplaced anger on who they should be mad at. It's the institutions, it's the insurances that are requiring this level to get care. But I just like hate the plight, because I get so many low support needs. People are like, oh, well, you know, we're so high masking. So people don't think we're autistic. We don't have these issues. And I resonate with that. But also like, I'm sorry, you are not the most marginalized. The difference between you getting your supports is living uncomfortably and it does matter. You deserve these supports, but like it literally is life and death for medium and high support need folks getting their supports. It's not a comfort thing and I don't mean that to invalidate other autistic people but like I lived without a lot of my supports for years and I didn't do well, but I survived. I wish that wasn't the case.
Chase: Thriving versus surviving. Completely different.
Courn: Yes.
Chase: So like you said, surviving is not necessarily comfortable and enjoyable, it's like my bills are paid for. I technically had food, there was house, there was housing, secure housing, like clean water, like those things. But like you might have been like depressed and anxious and have any other mental illness along with that because you weren't having the rest of your needs met at all, let alone some.
Courn: Yeah! There's just a lot of comparison and like it's not to compare yourself to other autistic people and be like, oh, they have it so much harder than you. That's not the intention. It's to identify where resources should be prioritized. And hopefully when we lift our most marginalized, it comes back and helps everyone. That's literally how it works. And I think we see this discussion in every space. We see it in race discussions as well. It's like, I think a lot of like lighter skin people of color don't want to have that discussion about having light skin privilege because they're like, oh, I'm not privileged, you know, compared to white people. I'm like, that's not the discussion you need to be talking about within your own marginalized groups. There's always someone who is more marginalized and that's not oppression Olympics. That's just to say who needs help, who needs resources. That doesn't mean you don't get resources as a result, but that's what it kind of comes back to. People are just like, oh, I don't think I get less or more resources, or I think I'm just as marginalized as other autistic people. And that's not true.
Chase: It's the comparison. That's the kicker, right? Like that's kind of the dangerous part and the harmful part. It's like comparing against something else, someone who maybe has it better or worse than you. When like the reality is, there's always someone who has it like easier or harder, better or worse, but it's like it's just compared to you and like what just, you, rather than against everyone else. But you're saying even within the community.
Courn: Yeah, there's always privileged people in any community and then you bring in other factors like race, class, and it complicates it even more. And I think people just aren't ready to have those discussions in the autistic community. They want to think that, you know, if you have autism you're inherently very marginalized and you can't hurt other people in the community and you can!
Chase: Right, right. Because the idea and argument also is that those labels are just not helpful and we should like, she was saying we just shouldn't use them at all.
Courn: Yes.
Chase: Rather than just for her, she's like, I don't want to use it on me. She was like applying to the rest of the community. That’s so weird to me!
Courn: And that's a very different like, observation. And that's the thing, because it's people being like, oh, these labels literally got me life affirming care. They're what tell people that I need assistance.
Chase: Like, yeah, like literally like funding for some of these things like state funded who like you can't afford-
Courn: You have to hit a level criteria, like level 2 or 3 to get certain resources and school and work, from the government.
Chase: like I said, if you can't walk, can't talk, any of those things you need like like physical things to help with that. And again, like we've talked about this over and over, like when something doesn't apply to you, just stay in your lane with it. Just stay in your lane. Like don't apply it to the rest of the community. We try to do that here as much as possible, learning, you know, where to kind of curb ourselves.But like, yeah, just because it doesn't apply to you, doesn't mean it won't apply to everyone and like you don't need to change the rules because you don't know how that person's experience is. It can be completely different than yours and they might actually need something that you don't. You could be almost the exact same person, but they still have a different need, like that's just because they're a different person. The individuality in everybody is just wild and moments like this, I'm like wow we're all so freaking different, for how similar you and I are, so different but you had a good point about like just the needing things to survive and support labels. So overall we're team labels?
Courn: Yeah.
Chase: If they apply to you.
Courn: Yeah, I think labels can be very affirming. And I mean, you need labels to access care and that's the healthcare system we live in. And until we can fix that, we will always have to support labels. Unfortunately. I think the thing for me, I think there's just a lack of accountability. If you say something and someone corrects you, acknowledge it. I consistently say stuff that's wrong all the time and someone will call me out. I'm like, okay, let's address it, move on and learn. But if you don't take that step to be like, okay, what I said was wrong, was harmful, it hurts because I mean, that's just so many of the popular influencers in the community, they are low support needs and they give a very one-sided look at autism of like, oh, look at me, I can have a successful acting career and do all these things and I don't need a caretaker. Just my partner's enough. And that's a very privileged view.
Chase: Definitely. But that becomes the face and the standard and the social be like, oh, well, this person is autistic. They can do it. Like, why can't you? Like, why would you, why do you need these things? They did it just fine. But that's not at all helpful. And it's very harmful to think that and compare.
Courn: Correct. And she's also shared some other false information. Like there's a big stat that like autistic people have like a lifespan of like 35 years old, something like that. And it's actually like misinterpreted from a study. It's actually the median age in that group of people who died. So it's just so many people happen to die in that group and it was from very random things. Yeah and then they took the median age of people who died in that group of autistic people and then people misinterpret that as oh, the average age of an autistic person is 35. That's fear-mongering. That's false information. She, she has doubled down on that information.
Chase: Feels like some QAnon shit.
Courn: Yes.
Chase: That just feels like so false.
Courn: Yeah, well it's also just like don't- I don't know. I also just- a lot of autistic people have so much anxiety around things like that and when you're just fear-mongering being like, okay-
Chase: Why would you even say that?
Courn: Your life expectancy is 35. That's not very far from me. It's like well, what's the point? I'm going to die soon. Anyway, like don't say shit like that. Like yes, there is decreased life expectancies for actually all people in neurodivergent spectrum and that's for a variety of reasons: inadequate health care access-
Chase: Not just because they're autistic!
Courn: Yeah, like comorbid conditions like there's a lot of connected things but yeah, if you want to talk about that that's fine but don't hit with the shock factor of you're gonna die at 35, that's insane!
Chase: Clickbaity shit!
Courn: It is!
Chase: Remove your labels, we're not part of the system that's gonna kill us at 35 anyways, that was a summary of the video, folks, you don't need to go watch it!
Courn: That was pretty much-
Chase: Summarized it for you!
Courn: That was pretty much it but yeah there's a lot of people making a lot of really good content to like I don't know, stand up to those type of false information and they just get blocked and ignored by a major creator, so it does suck!
Chase: That is rough. I don't like that. Okay, I'm also really excited to hear about any of our questions we got from the Instagram Q&A. Did we get any good ones that you want to talk about today?
Courn: Yeah, no, there's a few on specific like terms and topics. The first one is asking how we felt about the terms neuroqueer and autigender. I think I'm saying those right.
Chase: Nice! Do you want to do an explanatory comment about those words? So people listening who don't know will find out.
Courn: Yes. Yeah, I never actually looked these up prior.
Chase: I've only heard of one of them.
Courn: But I assumed that's what they meant and they did. So neuroqueer means a person who sees their neurodivergent and queer identities as interacting with each other. So they feel that they are contingent on each other, that it affects each other, that they can't just be standalone queer, that very much the neurodivergence affects it. And we've definitely talked about this too. And then autigender is a bit more specific. So it's a person who sees their autism specifically as heavily influencing their gender identity. So it's also that similar idea that you can't really unlink them, like your gender isn't really separate from your autism because it affects how you see it so much.
Chase: So the question was just like our opinions and like how we feel about those terms?
Courn: Yeah.
Chase: Okay. Neuroqueer, I can get, I mean, I can't really comment on autigender. I'm not autistic, but I think hearing people talk about those it seems very correlated. Neuroqueer, it's not something I'm gonna use but like if it works for you it works for you.
Courn: Yeah.
Chase: I can't tell you to use a label or not. Like if it, if that's how you feel, that's great. Like-
Courn: I think that one sounds cute to me. I think my only thing is I still feel hesitant about people using neurodivergent-
Chase: I was going to say!
Courn: As a blanket term, because I know probably the person who suggested this as well as most majority people using this term are actually autistic and I do have some qualms about just saying-
Chase: Or even just ADHD?
Courn: And yeah equating neurodivergence with autism and ADHD.
Chase: When there's so much more to the neurodivergence umbrella!
Courn: Yeah because I'm like what a schizophrenic person be able to use this term and get the same, I don't know.
Chase: Is that fall under the same umbrella?
Courn: Yeah. Oh dementia is also neurodivergence too.
Chase: Oh, I didn’t know that!
Courn: There's so many things under the neurodivergent umbrella, so I'm always hesitant when everyone uses that term, but I'm like, okay, maybe you have multiple neurodivergent identities, fine.
Chase: Sure, and we don't know that about the person who's using this, but I think that would be, yeah, I would agree, that's my one hesitation.
Courn: And with anything, I don't think these are super formal self-identifying labels, I think they're more like fun things.
Chase: Could be like Neurospicy and like all the other ones where it's kind of just tries to be a light way to put it.
Courn: I think it's better than that one, but yeah I think it's more just like I don't think you should be using this as like, I don't know information, medical information. Yeah, if someone asks you what you were, I think that's not a very helpful label. But if it creates connection with communities, like I definitely feel that my autism and ADHD heavily affects my queer identity, and yeah, my I don't know not liking social norms as much around sexuality.
Chase: So we've talked about like just so much connection between autism and your gender, gender identity, gender expression, and how like a lot of that is formed in like the queerness connections.
Courn: So, I mean, it's like, why wouldn't it? Because I mean, literally that's, you have neural developmental differences. Like, of course it's gonna be connected to the way you think about things. Yeah, and I feel that way about autigender too. I think I like autigender more cause that one's more specific.
Chase: Sure.
Courn: It's saying autism. It's saying gender identity. I also resonate with this as well because I feel like I don't feel like a person, I feel like a little alien and I feel like it's very much affected by autism. It also kind of sounds like agender, which kind of similar to that, yeah I like them, they're fine.
Chase: Yeah is there an alternative we could use instead of neuroqueer for specifically ADHD queer, like cuz that doesn't, AUDHD queer does not work.
Courn: Yeahhh. Could you'd like autiqueer, I know that one's not, I've never heard, queer-
Chase: Audi, Audiqueer?
Courn: I think if they just changed the neuro, I'd like that one better. Yeah.
Chase: There's no ADHD equivalent, I think too, that's unfortunate part because it's like an acronym.
Courn: I do feel like autism is very much always prioritized in a lot of these like terms and stuff which also bothers me a little bit because I think more than autism affects your gender. I think there's a lot of neurodivergent. So maybe we're arguing for neuroqueer. I don't know. Where am I going with this?
Chase: I mean we're just going in circles. I mean there's no, it's errant in this way but.
Courn: Although the thing I did look up is that with your autigender, that doesn't essentially mean that you align with a, like that could be any gender identity. So it's actually not very useful information in terms of like autigender doesn't tell someone's gender. It just says that their gender is affected by their autism. Like being autigender doesn't mean you're non-binary, which I thought it did initially, but then when I looked it up-
Chase: You could be cis and autistic and have that correlate and still be autigender. Okay.
Courn: Yeah. Like you could be trans out because it could affect other gender identities. So it doesn't necessarily mean that, you know, non-binary, but I think that's the connotation when a lot of people use autigender. So yeah.
Chase: Interesting.
Courn: I know labels are interesting. I'm like, if you want to make them to make you feel like you resonate more with things, I'm all about it. I also just think like do what you want. These don't hurt me. I'm like I like this better than neurospicy or other phrases like these are little labels and it seemed like they had like good origins too. It seemed like they were very community minded when I was looking them up. So.
Chase: Yeah, I could see that.
Courn: There was another adjacent term that wasn't mentioned, but I wanted to bring up, which was autist, because I literally thought this meant an autistic artist.
Chase: Yeah, that's what it sounds like.
Courn: No, it just means an autistic person, just short for autistic, like autist. So instead of saying autistic person, it's shortened, which I get because that is an annoying thing that comes up because I don't like to say I have autism, you say I'm an autistic person, yeah I'm an autistic person or I have whatever.
Chase: And that's just your personal preference on how that's used?
Courn: Yeah.
Chase: Because I think in the past you were like, oh I don't really care if you tell me.
Courn: No, I don't care about person first language when it comes to disability.
Chase: Personally, with you?
Courn: Yeah.
Chase: Okay.
Courn: Some people have very strong opinions on that. Some people really do not like saying if you say I have autism that would offend someone. You say I'm an autistic person. I do like that better but, I don't know I got diagnosed with autism, like that's how it works. They don't say you're an autistic person when you get your stuff. So.
Chase: You have autism!
Courn: I wasn't diagnosed with anything but if I was that's what they would say.
Chase: Self-diagnosed by Dr. Courn.
Courn: Yes.
Chase: Dr. Courn Dog.
Courn: Although I don't know I got told that I'm not technically self-diagnosed because a like a professional told me I have autism even if they're not someone who can diagnose it.
Chase: That's not how that works.
Courn: So they were like, oh, you still like, and I was like, okay, whatever.
Chase: So if the foot doctor gets to tell me I have cancer, do I have cancer? That's essentially what they just said.
Courn: Yeah. Like my therapist is not, they're not whatever.
Chase: That's not a diagnosing doctor.
Courn: Correct.
Chase: Or professional.
Courn: I'm not trying to gatekeep anything, but I just thought that was interesting-
Chase: That is weird.
Courn: Tidbit that someone said.
Chase: Okay.
Courn: But yeah I really thought it meant autistic artist. It doesn't. So I really thought all these other people were also autistic artists like me.
Chase: And you're like, oh same!
Courn: So I don't think I could get past that let down, but the word's fine. Having a shorter version for autistic person is nice. I wish it was more used.
Chase: Start it. Start a trend.
Courn: Autist.
Chase: My small hot take is that a lot of people who are really good at like a craft are AUDHD in some way and they're just like hyper fixated so well on a skill. It could be like nature, sure. They could be like naturally have a talent, but I'm like partially convinced that they're just like undiagnosed, like really hyperfixated on the skill.
Courn: Yeah, maybe.
Chase: Not everyone, but I'm like, is it? Could that be a theme?
Courn: I'd say yes and no. I feel like I'm always hesitant to say any label of, oh if someone's really good at something that inherently means that they have a neurodivergence.
Chase: I'm not trying to say it's all, I’m curious.
Courn: Because it feels like it feels a little aspie supremacy adjacent-
Chase: Oh no!
Courn: When you're like, oh because someone's really good at something.
Chase: They have to be this.
Courn: Yeah.
Chase: No.
Courn: There's people who are good at skills and talents that aren't autistic or have ADHD. Some people are just really passionate about things.
Chase: What is that like? I can't relate.
Courn: What is that like?
Chase: To just be like naturally good at something.
Courn: Because I do feel like I've seen some big low support need accounts be like, oh yeah, every autistic person has like a special power and if you see someone famous who was like really good at something, they like, you know, will like, what is it called? Like crowd diagnose or like ship them as autistic and be like, oh. And I'm like, don't.
Chase: No, I'm not trying to put, yeah, I'm not trying to put on all of them, but I am curious if any of them are, if that's like any correlation, but again.
Courn: If you think about that activity and do it all day, every day, and it's been your life, I might look into it.
Chase: I don't know.
Courn: But I don't know. There's also the idea of like monotropic interests and that's doesn't have to be attached to autism or ADHD.
Chase: Oh, what is monotropic?
Courn: Just a very strong interest that isn't related to autism. But like if you were an allistic person who was, I don't know, spent your whole life dedicated to something. You're like, that's a monotrophic interest.
Chase: Wait, you can be hyperfixated and like have a special interest but not be autistic or have ADHD?
Courn: I mean, yes.
Chase: Oh my lord.
Courn: There's a whole big spectrum of things.
Chase: Oh my gosh.
Courn: I mean there's people argue that, oh, those people are undiagnosed, but I definitely, I mean there is people who don't have any of those social difficulties. They don't have any sensory issues, but they have really high restricted repetitive interests. So something else could be causing that. It could be a different neurodivergence.
Chase: Gotcha, but they don't have all the other symptoms.
Courn: Yeah.
Chase: What do you call em? Traits.
Courn: Traits.
Chase: Traits. Symptoms. Jesus Christ.
Courn: Medical jargon. It's hard to get rid of that one. I don't know those.
Chase: I knew symptoms was not right, but I was like, what's the, traits?
Courn: It's like comorbid, symptoms, other stuff like that. It's hard because that's how what medical professionals use.
Chase: Cancer, liver, toenail.
Courn: Yeah. Dysfunctional, disorder. A lot of people don't like those words. I get it.
Chase: Yeah. Interesting. Okay. So overall, I think the consensus on the, on the pod is we always like terms if it works for you, great, if it doesn't work for you then, great, you don't have to use it.
Courn: Yeah, empower to use whatever you want you know as long as it's not harming people there's a limit to everything but I haven't heard anyone say that those issues and those labels in particular were offensive. So I think they're good for me. That's all I can say. Another topic that came up too was people wanted us to talk about people using autism or ADHD to excuse bad behavior. I think this is a very-
Chase: Hot topic!
Courn: It's a very nuanced topic too, because I think it can be very quickly slide into a lot of ableist things of being like gatekeeping and deciding who is autistic and who isn't.
Chase: Right.
Courn: Who has ADHD and who doesn't and like deciding for yourself what a trait isn't for someone, I think is very slippery.
Chase: Very very slippery. So we're gonna approach this with some caution. Because yeah I got some experience with people doing this but at the same time it's like you can see both sides and you're just like, oh, but like this, but like that side. And you're likep
Courn: Yeah, I seem to see it more. I think people put it on autistic people, but personally I see people misusing it more in the ADHD community of being like, my brain is so scatterbrained. Like I'm just incapable of doing anything. Like it's very sensationalized.
Chase: And then like, oh, I'm just so ADHD. Like that, yeah. Where it's like kind of like the wrong usage.
Courn: Yeah, which is like, I can't tell if it's actually coming from people in the community or it's a combo of-
Chase: Is it like authentic or are you just kind of using this for like attention and clickbait? But also I'm not really one to like be able to judge that, but like this is how maybe it was interpreted you know it's like that-
Courn: Yeah, I think it's also I think people are saying, oh they're using as bad behavior is usually coming from a lot of ableist people that just would assume anything like, oh if I'm saying I can only eat this food they're like-
Chase: Bad behavior!
Courn: Oh you're just being here yeah, you're being picky, yeah you just don't want to try other foods and it's like, I can't, you know.
Chase: But I think this is specifically in the lens. Well, actually what because behavior is a vague term. I would I took in the lens of like work and maybe if like someone you work with or work for or someone who works for you, maybe a manager like situation when someone like is either refusing or is not doing a certain part of the job and is maybe excusing it on this but if accommodations have been offered and they're not taking them or like maybe the accommodations aren't working. It's like so many layers to that where I'm like, okay, yeah, have you tried this? Like have you, have you tried other options? And if those are not being put into place and working, is a person just kind of like refusing help? Is it so bad that they're refusing help? But like they have a job to do.
Courn: That's interesting. I didn't think of it from that lens.
Chase: That's kind of what I thought of at first.
Courn: Like I was thinking initially because I think a lot of people, I'll like to use Elon Musk's example of like, oh, like, oh, but he's autistic and that's why he acts like that. And I think that's the side I can get behind with people like, oh, because you're autistic, you're inherently racist, transphobic.
Chase: What? What?!
Courn: It's okay. Like, it's okay because you have like very, like restricted repetitive behavior. It's hard for him to break these cycles. And I think that's where I have a problem.
Chase: No! I have a problem with that.
Courn: Yeah, maybe he might be more susceptible to being stuck in these patterns of behavior, but it doesn't mean those patterns have to be negative. That is entirely his choice and his experience.
Chase: And you can change that. You cannot be a transphobic asshole.
Courn: Yeah, I think that's the thing where it comes up, people are just like, oh, and I feel like that is used a lot to deflect blame. I feel like when I call it other autistic people who were white for being racist, they don't directly say oh I can't be a racist because I'm autistic but they use lines of like oh I'm a fellow marginalized person, like I understand what it's like to be discriminated against and I'm like no you don't. You're white. You do not understand. I think it's along those lines.
Chase: But using the disability as the like yeah. Yeah. How interesting.
Courn: And I hate that because it hurts all of us because then I think it gives an excuse for a lot of ableist people to be like, oh they're using their disability to be difficult. They're faking it for attention.
Chase: Oh, faking it for attention drives me freaking crazy.
Courn: It is. Cause it's like, I, it's hard to discern who's faking it for attention and who isn't. And it's really like, I think it puts you in a dangerous spot to be the one to decide this person's faking, this person isn't. I have no idea but I think you can agree when someone's like, oh the behavior that you're showing online, I don't know, has negative influences, like that's okay to say.
Chase: Yeah kind of like we talked about with a lot of AuDHD things though like it's more than just those surface level traits that people think about. It's like so much more dysregulation behind the scenes and kind of like internally that people don't think about that make it the experience that it is. And it's not just a disorganized, it's not just, oh I don't like these certain foods and it's not like, oh I can't wear this thing, I don't like it. It's like so dysregulating. So.
Courn: I think that's a big part too, is like how it's phrased, I think makes it very abundantly clear if someone's using it as an excuse or is actually talking about what their support needs and accommodations are.
Chase: Sorry, I'm late again. I just can't stay organized. Oh my god, I'm so ADHD.
Courn: Yeah. It's not. The framing is like oh!
Chase: It could be like when you have ADHD it's freaking hard to be on time at times.
Courn: Which makes me wonder if some of those like I don't know communication errors are because of miscommunication like why people are assuming you're justifying behaviors because you're not communicating it well, which I mean could be part of the disability.
Chase: Just like we talked about earlier, like just because someone has really good skills at doing something does not automatically mean they're autistic and they're only good at that because of their autism, right? It's like, It's not just the behavior because of it.
Courn: I do though, I do think I've seen a few people like kind of on the autism relationship side of like social media, kind of using autism as a way to say that you don't need to make compromises with your partner. And I think that bothers me a bit, especially as a low support need person, saying you're completely inflexible on like, I don't know, adjusting to your partner's communication style. Like it's not one-sided, like, or just being like, I am incapable of changing or I'm incapable.
Chase: Because I am this thing.
Courn: Yes. And it's like, yes, I have a harder time with change and I feel comfortable in the things I do, but if my repetitive behaviors are harmful to my partner, like I need to work to change that. And it may be more difficult and take more steps and require more patience, but like that doesn't mean it's not worthwhile doing. Like I think inherently people think that a lot of autistic traits inherently mean they're good for you and they're good for other people. And sometimes they are, sometimes they aren't. A lot of fixated interests and repetitive patterns and behaviors can be harmful for you and people around you. And that's worthwhile addressing. Like you're not completely inflexible as a person. I mean, I think that depends on different people on the spectrum, but I feel like I'm seeing this from low support need people like myself that I'm like, I think you're a little more flexible than you're giving yourself credit for. Like you don't have an excuse to be a bad partner and have your partner do everything.
Chase: Yeah, that's the difference is like the excusing the bad behavior. It's the bad behavior or the harmful behavior. Let's put it as harmful. I don't know about bad. Like it is harmful. When your actions are doing things that are harming others, you got to take some responsibility for that, whatever the cause is for that.
Courn: Yeah. I think there's differences between like taking responsibility and correlating causation. Like there's a difference between saying, oh, my autism makes me do this. Which means inherently that I'm incapable of doing anything else.
Chase: Right. When like anybody has the power to change things for the most part.
Courn: And you can get called out like, okay, maybe you can't change a bad behavior, but also you can still acknowledge that it's a bad behavior.
Chase: Yeah. And here's what I can do instead. Here's what I can't help with or like this can't change, but here's, here's something instead or like, yeah, it's a compromise. Cause you're like, you said some things are just not gonna change, like you're not gonna wear these clothes, you're not gonna like eat this food, sorry I can never go to this favorite restaurant of yours because I can't eat anything here, sure. Like but you can still meet in the middle and compromise especially when it comes to relationship, friendship, partners.
Courn: Like you have to there has to be some type of compromise and that sometimes that looks like not compromising on certain topics. That you cannot, compromising on topics you can because I feel like that happens a lot with my partner. So yeah, I just think the whole idea that you were inflexible of changing at all is a little outdated. And I think it's a gray area too. It depends on the topic. I think there's reasonable updates.
Chase: There's so much context that we can't account for.
Courn: That's what I'm saying. Just saying you were completely inflexible. I'm just like, okay, well, people are always changing. That's also why autistic people-
Chase: Have you heard of evolution?
Courn: Charles Darwin!
Chase: You as a person have grown and changed since you were a toddler into an adult so like clearly change is possible, you've made some cognitive change as well and like choices. So.
Courn: It's very subjective too.
Chase: Yeah.
Courn: So yeah, I'm always a little hesitant on that topic.
Chase: Especially with Elon Musk.
Courn: I'm like in that case, I'm like, yeah, yeah. He's, but also I don't even know if he's said that. Like he said, I have, he's like I act like this cause I have autism or other people are putting that on him.
Chase: I feel like it's just like crowd-sourced almost or whatever you call it. Like crowd diagnosed.
Courn: And I think that's also just like an infantilizing thing of like, oh, he's autistic. He's disabled. He can't help it. Right, you know.
Chase: Stop excusing it.
Courn: Disabled people are not horrible people. Okay.
Chase: He can't help it. Well, there are definitely some things that people cannot help, but like I'm sure a lot of it can be helped. But again, I'm not the person to judge that. I'm not really the person to make that call most of the time.
Courn: Yeah. I think if you're literally being discriminatory, that has nothing to do with your disability.
Chase: There you go.
Courn: That's, I mean, that's all borderline. You're being racist, you're being homophobic, you're being anti-fat, like that has nothing to do with your disability. That doesn't give you a free pass. It may make people understand where you come from, but it doesn't mean it's okay. There's a difference between something causing something and you not getting accountability for your actions. So if you are that way because of your disability, fine, but that doesn't mean it's good to be that way. Not everyone else with that disability acts that way. You are not the standard. Yes.
Chase: And that's a Neurotake, friends!
Courn: Yes. Which then leads me into another topic we got asked about, which is just, this was kind of general, but they just want us to talk about neurodivergence in activism spaces and this kind of led me to this topic because then I was thinking about I think the strong sense of justice thing comes up a lot with autistic and ADHD folks being misinterpreted as an ADHD trait. Also the wording being misused for autism, when it's not a strong sense of justice. Like you just have like strong opinion rigidity. Cause the idea, like I see a lot of autistic accounts like, oh, autistic people have a really strong sense of justice. Like in a way implying that they're morally superior and more likely to be involved in activism spaces. When that just isn't quite true. Because we know intersectionality, a lot of white autistics like still have white privilege. They don't acknowledge that. That's not even going into class, gender, queerness. So I thought that was interesting.
Chase: Hold on, I'm trying to like process that. Basically all autistics have to be in some kind of like advocacy space because they have a sense of justice.
Courn: Yeah, not even saying they have to be in that space, but just like they're more likely to be and that's not really true. And I think that kind of like moral superiority of raising autistic people, and it includes ADHD people as well, in those stereotypes, is very like toxic. Because it's very much just like, I don't know. It's also kind of giving that inspirational vibe of like, oh disabled people are just like better people because they face marginalization. And it's like you can acknowledge that like marginalized people are more likely maybe to resonate with these issues and that's fine, but that doesn't mean they're always going to be morally superior or on average are morally superior. And also when it comes to like, particularly in autism, it doesn't necessarily mean like, oh autistic people are like more likely to have good points of views on social justice issues. It usually just means they are heavily relying on black and white rules. So if you know something is good, murder is bad. There is no excusing murder. When it comes to topics that are like quite confusing when we talk about-
Chase: Complex even.
Courn: Yeah. Police brutality, like the prison justice reform system, like thinking about stuff like that, it gets kind of gray because if you think about just a black and white opinion, Bad people should go to prison. Okay, but what if prison isn't the best way to rehabilitate people? So it's not actually strong sense of justice. It's just black and white thinking and opinion rigidity. And that to me is kind of like a big topic I think comes up about like autistic and neurodivergent people in activism spaces that like, oh, we're like morally superior and that's really dangerous!
Chase: Any kind of superiority talk and narrative is gonna be pretty dangerous.
Courn: Yeah. And then I think maybe they wanted us to talk more about like, I don't know, like what neurodivergence like activism looks like in these spaces.
Chase: Sure.
Courn: Which I was trying to think more about because I see a lot of, I mean I see more activism for autism and ADHD. I don't see it for other neurodivergence.
Chase: That's a, yeah.
Courn: And that's the issue for me.
Chase: Why do you think that is?
Courn: I mean, I think that there's a lot of stigma around so many neurodivergence, and I think just between autistic and ADHD people, they don't want to acknowledge that people that are schizophrenic, or OCD are also neurodivergent, because that means acknowledging people that maybe don't necessarily like their neurodivergence. And I think that's a hard topic for people to gain. Like people with dementia also have neurodivergence. People who have Down syndrome have neurodivergence. Like It's a really big group. But I think in general, I think there's just a lack of disability justice for me in activism spaces, or at least in spaces I've seen. I think it's kind of a footnote, and I think that's a real loss for me, because I think I see really big activism spaces not requiring masks, like they're not really having accessible things, like there just isn't really prioritizing disability justice, like the SSI asset limit to me should be one of the most like important things that we should be fighting for in the government. And it feels like most leftists don't talk about that or they don't they're not even informed on that opinion. And it's like, why aren't they? Because that information is not really like talked about. Like I think disabled people are treated so badly in the US. I know that's not just the US, but-
Chase: So poorly! Yeah, it's almost like I don't even realize that it's happening. It's like that bad. And to me, that's like, like a really it's-
Courn: Like I literally had to double take, fact check everything because I think the first time someone college like literally told me they said, oh, they're getting married to someone who's in a wheelchair. And they said, oh, we can't get married because if we do, he'll lose his medical benefits. And I was like, oh, why is that? Like, does he have something special? She's like, no. If we get married and we make more than $3,000 a month, He'll lose all of his medical benefits.
Chase: And he basically makes no money.
Courn: Yeah, like 2 grand. He also can't have more than, you know, a couple grand in savings. Otherwise, he loses. And I'm like, whoa, that's just targeted poverty. Like, that's so bizarre.
Chase: Correct.
Courn: Yeah. And like, I don't know, you're still just like, why are disabled people allowed to get paid less than minimum wage? I think it's still like 37 states like it's the majority. I think it might have got down to the low 30s in the past year but-
Chase: That's messed up.
Courn: I just feel like I don't hear that talked about, and that's not to say like oh these other issues don't matter like they all matter equally but to me those are all issues that affect disabled people and a lot of neurodivergent people as well.
Chase: Yeah I mean, I was just looking up kind of like neurodivergent as you talked about that because I think we touch on this a lot more and hopefully we can continue to touch on it of like the DSM-5 does classify neurodevelopmental disorders into 6 overarching groups and within those groups there's obviously so much. Like ASD is its own group and then within that there's probably a bunch of stuff. Communication disorder is one of the groups. There's probably so much within that that still gets considered neurodivergent and like it's not being talked about. So I didn't even realize. I mean that was something I learned when we started talking about this podcast.
Courn: That's why I always think it's dangerous when people ask me to like talk about neurodivergence, whatever it is, blank, because I know people mean autism and ADHD. Yeah, and I think that...
Chase: Use those terms specifically, not the big umbrella because that includes all these other people. All the learning disabilities or most learning disabilities. Dyslexia, dyspraxia. Yeah. That's like the...What's the dyspraxia? What's that one?
Courn: That's what I think is movement and balance issues. Maybe I'm tripping though.
Chase: Intellectual disabilities is the other group, so like there's of course, adhd has its own so like those are two they're on Neurodevelopmental motor disorders is the other one. So like within that, there's a bunch of stuff underneath those umbrellas and those groups. I have a think. I don't know.
Courn: Yeah. There's a lot in there. So it's also just like a very generic question to me when people ask me like, oh, like how do you get more neurodivergence, like activism in these spaces? Like, what do you mean like activism for like thousands of disorders and thousands of like, I don't know, different labels. Like they don't necessarily have to be disorders. Some people like that terminology, they don't.
Chase: We just gotta talk about it more though. And like bring it to light. Give it more exposure!
Courn: Yeah. Cause I think, yeah. I just think there's not a single answer like that someone asked them like, oh, can you talk about racism in activism spaces? Like that's a very multi-pronged issue.
Chase: Huge!
Courn: Like there's a million things you could talk about!
Chase: Yeah!
Courn: And to me that feels like your diverge as well like and that's just one subset of disability which is even a wider bucket so should there be better disability advocacy in these spaces? Yes, it's not enough. I feel like a lot of people are talking about it and it still just isn't enough for people to care.
Chase: When will it be enough?
Courn: I don't know. Like people literally can't even wear a mask to care about other disabled people. Like that is such an entry-level...
Chase: You talked about that recently and I didn't even think about that.
Courn: Yeah, that is the litmus test. If someone is not, like if someone told you need to wear a mask to protect someone from dying and you won’t do it, it's like that is the baseline activity like that tells me you were so unwilling to invest in disability justice that you can't even do that one small task that is a minor inconvenience for you. It's like, people are not ready to have those conversations. Like.
Chase: Do you think we can make better masks? Sometimes they're dysregulating for folks like the sensory piece.
Courn: Yeah.
Chase: How do you work best at?
Courn: I mean, there's different types of masks. And I've said this before, not all masks are made equal. Ideally you just want a good seal, but wearing something is better than nothing. I think I didn't realize that there's so many different types of masks and the more expensive ones of course, they are more comfortable and they fit better and that's something you don't know but yeah.
Chase: That makes it harder to access!
Courn: But I feel like I get a lot of people just like, oh I can't wear masks and honestly the majority of those comments come from low support need people who I feel like just immediately give up. Like there is legitimate medical reasons to not wear a mask. That is actually the reason why other people should wear masks so they can protect you. But yes, masks bother me. I found masks that bother me less. I have accommodations. I definitely don't wear them for longer than 4 hours. I try to go outside, do things.
Chase: You mentioned that and I was talking to my wife about it because I was like, oh, I didn't even think about the fact that people who can wear a mask and who essentially don't need to wear one, how that helps the greater community be able to then experience things. I literally never thought of that. I sat with that for days. I'm just like, yeah. Wow.
Courn: It's like a really shitty thing. I feel like I got called in because I wasn't masking earlier this year and someone very politely called me in they're like, just so you know this is the COVID rates like this is what it looks like when you wear a mask, and when someone presents that information to you, they shouldn't have to, but I was like yeah I don't have an excuse for not masking I will start masking again.
Chase: I really have no excuse as well. I should do it.
Courn: It's not too late to start doing it.
Chase: I will do my best to start doing it. Yeah. Everywhere?
Courn: Yeah. I mean, it's also not an all or nothing thing. I mean, you can start with like masking, like if you're going anywhere that's crowded, like a sporting event, a concert, that's a big yes. You should wear a mask. Doing it at the grocery store.
Chase: Like, okay, folks, gotta be accountable!
Courn: Every time you wear one, it mitigates your risk.
Chase: So, it is definitely not comfortable, it's not my favorite thing but I gotta keep myself accountable
Courn: And definitely look into other masks!
Chase: I'm gonna try wearing the thorns game, how about that, I'm gonna try!
Courn: Yeah!
Chase: I'm gonna try and do this, yeah.
Courn: Definitely try different masks too. I usually wear KN95s because they're a little bit more accessible to get, you can get them like-
Chase: My client had one on today because we thought there was an exposure there wasn't but he wore it just to be like safe and it was like a really kind of nice looking fitted I was like oh had like a nice little like chin like wow that's kind of nice!
Courn: There's some fancy ones, people get the hardcore ones with like filters on them and stuff like flo masks and stuff.
Chase: I think Jess got one of those.
Courn: Yeah they're pretty nice but yeah the 3M Auras are kind of the gold standard if you're like oh, I want the most safety mask that fits the most people that's usually the one. I have too small of a nose bridge for the 3M Aura so it actually doesn't fit me safely so KN95s fit me better even though they have a slightly less safety rating.
Chase: But it is a good litmus test if someone's like not willing to wear a mask.
Courn: Yeah. Especially when someone like calls you out on it.
Chase: So many people!
Courn: Yeah, like I think a lot of people just don't want to have that conversation. Like they would just want to be like, oh, well, less people die now. And I'm like, yes, but some people are still dying in high numbers. Like, does that matter?
Chase: Let’s talk about how long COVID effects, just because you get COVID and you're over. It doesn't mean that's not going to not affect your body.
Courn: No. Like I just think people don't realize how many people are getting long COVID too. I think I saw a stat that was saying like in some numbers that up to like 20 to 50% of people, like everybody was experiencing long COVID symptoms and we don't know a lot about long COVID. Like all of the traits are actually so bizarre.
Chase: All brand new!
Courn: Everything from like losing taste, which I think was the initial thing people heard to like literally like having IBS, like having chronic headaches.
Chase: It's a lot of stuff that's like kind of feels random and you're like, wait, could it be tied to this? Which is not good.
Courn: You're also at increased risk if you have joint issues like me, if you have hypermobile EDS that puts you in increased risk for long COVID.
Chase: Like you.
Courn: Yeah, like me. You don't want to be like me and get long COVID because then you just feel chronically ill all the time. So yeah.
Chase: What a tangent. That was an important tangent though. I was very glad we went on that.
Courn: Yeah.
Chase: About the masks.
Chase: Okay, well, to keep myself accountable, I should go buy some legit masks that actually cover my face properly because I don't think I have any. I just have like the little fabric surgeon ones or whatever that they wear.
Courn: Oh Chase!
Chase: I'm sorry!
Courn: Come on!
Chase: I gotta do better! That's why I'm holding myself accountable here. I'm sorry.
Courn: Yeah we're gonna go pick you out some masks.
Chase: Okay bye!
Courn: Bye!
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