Today I interview an autistic lady named Rel. She grew up from a very different background and culture from me; yet we share many similar struggles with autism. In this podcast, we explore some of these similarities and differences to illustrate what autism in women truly looks like. Her Youtube channel is listed below if you'd like to hear more from her perspective! https://youtube.com/channel/UCUCmwzzNa5u3HibgVT25rXg
Today I interview an autistic lady named Rel.
She grew up from a very different background and culture from me; yet we share many similar struggles with autism.
In this podcast, we explore some of these similarities and differences to illustrate what autism in women truly looks like and how to advocate for oneself.
We discussed many topics like masking, fitting in, the social stigma of being autistic, sensory issues and how it affects her life.
She also grew up undiagnosed like me, and it wasn't until the age of 26 that she received a diagnosis.
I hope our conversation teaches you more about what autism looks like, the differences in communication style between two autistic women, and a renewed understanding about what autism acceptance entails.
Her Youtube channel is listed below if you'd like to hear more from her perspective!
https://youtube.com/channel/UCUCmwzzNa5u3HibgVT25rXg
Kelsey: Hello everyone, so today I'm here with a special guest on the podcast named Rel. She's going to present her story to you all. She comes from a different background than me, and I felt that it was very important for you to hear multiple perspectives of what it's like to be autistic and maybe gain some insight about how conversations are a little bit different between two autistic people compared to neurotypicals. Feel free to introduce yourself.
Rel: Hey everyone, I'm Rel. Thanks for having me on, Kelsey.
Kelsey: Yeah, sure thing. So Rel, how do you feel that being autistic and diagnosed later in life has affected you? What was it like for you growing up undiagnosed?
Rel: Um, so when I was a kid I had like really clear symptoms that something was going on. My family wasn't really sure, and I do come from a diverse background, so mental health isn't really taken as seriously as it should be in those communities, even today. But you know, this is back in what, the 90s? So even less then.
And I remember my mom being concerned and noticing all the things I would do—like I would tick and stim, and just, you know, like the classical signs. And she would ask my grandma. My grandma was like, "Oh no, don't worry about it, you know, all her cousins and her uncles do that too, it's fine." So it was kind of normalized in my family, more like let's brush it under the rug.
Kelsey: Yeah. Do you think that was because they might be autistic as well?
Rel: Um, not necessarily. It's more like I did grow up in poverty, so I feel like that's an important piece of this. But when you don't have much of anything in a community like that, all you do have are your neighbors, you know? Like the barrio, your neighbors and your friends and your family—all you have is like the social aspect. And that's the most important thing when you don't have much: you need the support, you know, just in order to survive and to have those connections and everything.
And even back in the day—especially back in the day—if you were classified as different or other or even weird, you would lose all of those connections and that support. So I feel like even today, or with anxiety and depression, they don't really talk about that because it's like, "Oh, you know, get over it." Which is terrible.
Kelsey: Yeah, it's not helpful.
Rel: Yeah, or my favorite: "Go for a walk!"
Kelsey: Okay. But so you felt—did you ever feel like you were an observer in social situations instead of rather being a part of them?
Rel: I mean, absolutely. Even if I was part of like the group, or it was like a cookout or you know, at school and I was even with my friends or my family or people close to me, I still felt like I was never really part of the group. I was just an observer, and everyone would interact with each other and I was just kind of there.
Kelsey: Yeah, I can relate to that a lot. It's really hard to get past that feeling sometimes that you're kind of on the outside looking in.
Rel: Yeah, exactly.
Kelsey: Do you think that gave you a lot of anxiety?
Rel: Um, the social aspect not so much, because I honestly thought when I was younger, before I was diagnosed, I thought everyone was going through what I was going through and no one just talked about it at all—which, you know, you're looking back and that's hilarious because that's not how the world works at all!
Kelsey: Yeah. I can relate to that a lot. Like I thought every time there was a lawnmower, everyone else just had to suffer with me. I didn't realize I was the only one suffering!
Rel: Yeah, and that's like when you're a kid and you're like, "Oh, that's the adult thing to do, that you know, you got to suck it up and be strong," because everyone else was doing that, so you got to do it too.
Kelsey: Just deal with it, right? Did you get that a lot?
Rel: Yeah, yeah. And then like I would get really upset and I never knew why, but you know, now I know that with the noise and the lights and all that for me. And then once you learn that, you can make yourself a little more comfortable as you go on, and then you realize your emotions and all that, and just—it's helpful.
Kelsey: Yeah. So how old were you when you figured it out, when you got your formal diagnosis?
Rel: Well, I was suspicious when I turned around 20, 21, and it took me a few years to gain the courage to actually like research it and look into it. And I took all these online tests, and I feel like at first I really didn't want to accept it because it's like that internalized ableism where you don't really want to, you know, label yourself as something other, like, "No, no, I'm fine, there's nothing wrong with me, I'm just making things up, everyone has to deal with it."
But I kind of started accepting it little by little, and then when I was around 24 I started looking for a psychologist to help see what's going on. Because at the time I wasn't really sure what was happening, I just wanted answers, but I knew being autistic could be a possibility. And I actually didn't find someone until I was 26, so it took two years of finding someone.
Kelsey: Wow, that's insane.
Rel: Yeah! Most people, or almost everyone, they would call them up and as soon as I said it was for like an adult assessment they were like, "Oh, no, no, no, we don't do adults, sorry."
Kelsey: Yeah, it's really, really tough to be able to even get an assessment. I think a lot of people don't realize what a privilege it is even to have a diagnosis.
Rel: Oh, absolutely, absolutely. You have to find someone—even if you're not diagnosed as a child, because then your parents have to have knowledge of it—and then in America, the health insurance, all the money, right? And all the support you need to get diagnosed with anything. And then as an adult, especially when you go into like the neurological issues, you have to find someone who's willing and able to help or to see what's going on, and that's not to mention how expensive it can be. It's insane.
Kelsey: Yeah, I was diagnosed at 26 as well! And I figured it out first from systematic analysis of my life and then had to cross-reference with a bunch of YouTube videos to confirm it. I went to the psychiatrist and I'm like, "Hey, I have all of this, all of this lines up perfectly, I want a formal assessment," and she's like, "Yeah, everything you're describing pretty much sounds like a normal autism experience." Can I ask, did you have like a binder of stuff? Like all your—I had a test or like information, you know?
Rel: Yeah, I had like a whole Google Photos album of documented video proof of me stimming as a 2-year-old.
Kelsey: Oh, wow! Looking back it should have been really obvious. It's still insane that I went undiagnosed for 26 years when there's literally a video of 2-year-old me jumping on the couch, slamming my head into it intentionally, rolling off the couch to try to stand on my head or something—like this whole—it was like an hour-long video of me just stimming, and my parents I guess just looked at that and they're like, "Oh, she's just being a kid!"
Rel: Yeah, exactly! That's what I was thinking. She's like, "Oh, she's just being a little hyper right now, she'll calm down, it's fine."
Kelsey: So do you have any other diagnoses besides autism?
Rel: Oh yeah, let's see... anxiety, dyslexia, and—something else—ADHD! There you go, that's the one. My memory is terrible, so you know.
Kelsey: Right there. That's quite a lot.
Rel: Yeah.
Kelsey: I know a lot of people who are diagnosed with autism, they usually have a lot of comorbidities as well. So it's not like having anxiety or depression—anxiety, alexithymia... Alexithymia, there you go, yeah! Alexithymia, like all—it's a lot of comorbidities.
Rel: Yeah, so a lot of times it's like people aren't sure what's going on, or you confuse something for something else. Like ADHD and auditory processing disorder, people confuse that all the time, but both have symptoms of each—like you could be really sensitive to noise and you can also not have a great memory and be distracted by what people say.
Kelsey: Yeah, I bet that's really tricky. So you have alexithymia, definitely. What kinds of sensory issues do you deal with, and how does alexithymia affect your life?
Rel: Well, I definitely—I have an auditory processing disorder, and so loud noises or certain noises drive me crazy. I'll have like anxiety attacks or panic attacks if I'm around something too long. Like, I remember the other day I went to Dave & Buster's, and the music was abnormally loud, and it was just like way louder than normal—the people I went with agreed too—but I just wasn't prepared for it, so I had to leave early.
Kelsey: Yeah, it's really frustrating. Do you frequently carry along earplugs to try to manage some of that?
Rel: Oh yeah, actually I have, you know, the Loops?
Kelsey: Yeah, yeah, I have some.
Rel: I don't know what the difference is, because I know there's one—the original price is 20 bucks, and they have like 30 and 40 dollar ones—but I don't know, I feel like it's the same thing. Yeah, but I also have the noise-cancelling headphones, and I sleep with those on. It's a little uncomfortable, but I don't know, for my neck, but I think I got used to it because I kind of have to have them on.
Kelsey: You got to do what you got to do. If you could hear everything 40% louder and couldn't tune any of it out, it's really frustrating.
Rel: Exactly.
Kelsey: See, so one of the biggest factors of alexithymia frequently involves not really being able to know what you're feeling in a particular moment. What is your experience of that like?
Rel: So for me, I've noticed that that happens to me quite a lot. My—what is it? So like most people, they know instantly whenever they feel a certain emotion. Well, my usually factory setting, I guess, is like happy or content; I'm never really—I can never really tell when I'm upset or angry over something. And something will happen, and I'm not sure what's going on or how I feel about it at the moment, and then I take 20 minutes and then I start getting upset and like angry, and then I know. Once I start feeling that, I'm going to like have an outburst to whoever's—you know, whatever, whoever did whatever made me upset.
So I always take 15 to 10 minutes to just calm myself down regularly and then go deal with the issue, because I know I can get—I don't know, I don't want to be disrespectful or rude, or hurt someone.
Kelsey: Exactly.
Rel: Because I know I'll get really sassy really quick, and I really don't want to do that.
Kelsey: Do you feel like you have to try to algorithmically read your bodily signals to try to figure out what emotion you're feeling?
Rel: Oh, absolutely! Like sometimes I won't even realize that I have like an expression on my face—which is also something I have trouble with sometimes—but I guess I'll feel something, and it's not that like you can't feel emotions, it's just you can't feel what's going on at the moment, right? So I'll—I don't know, let's say someone did something and I get upset, I don't notice that I'm upset, and then I'll go to the bathroom to try to relax, and I'll see myself in the mirror and I'm clearly upset, like very upset—like my face gets flushed and I'm frowning, and you know, all the clear signs—but I don't feel it! And then I'm like, "Oh yeah, I'm like, oh, I guess I'm upset," and then I allow myself to be, you know, upset and then go through the whole cycle where I'm upset and then I relax, and then we figure out how to solve the issue.
Kelsey: Yeah, I can really relate to that a lot. You know, I thought I had never experienced anxiety in my entire life because I didn't realize that I had—like, literally this year I discovered racing heart and feelings of tension, and muscle tension in particular.
Rel: Oh my god, yeah! Like I clench my jaw a lot, and I didn't realize that until a couple years ago.
Kelsey: Yeah, you know that can be a stim, probably.
Rel: I hate it. I hate—it's the worst stim, it's terrible because it's so harmful, it can screw up your teeth. My teeth are literally thinner from how much I stimmed from, you know, suppression basically. Because socially, people get really scared when you start flapping your wrists or rocking back and forth.
Kelsey: Yeah, but clenching they don't see.
Rel: Exactly! And then it's like you hold the tension and all the negative feelings, you're holding it within your body, and it stresses your body out, and that is really bad for you—your heart and your emotions. And like my teeth are short, you know, and it's just, it can cause a lot of harm. And since we don't feel what's going on—like I don't know, maybe it's your brain's way of like blocking it since you constantly feel it all the time, you know, I don't know.
Kelsey: Yeah, it's a delayed processing for sure. Sometimes that's useful, like in crisis situations.
Rel: Absolutely.
Kelsey: Those who deal with trauma or abuse...
Rel: Yeah, yeah. But ultimately it's got to be processed, and sometimes that can happen, you know, 10 to 20 years later. And that's not ideal, I mean, if you're still suffering from something that happened when you were 5 years old 20 years later, that's a lot to deal with.
Kelsey: Oh, absolutely. I heard that a lot of autistic people are traumatized and they don't even know it, and then you realize it later on. You have to deal with that, and it's like with CPTSD... yep, the complex...
Rel: The complex PTSD, yeah.
Kelsey: I believe a lot of that is linked to sensory trauma, because all of this amplified sensory information can actually wire the brain in a traumatic way for autistic people. So whenever I have to wear earplugs or put on headphones, I am literally protecting myself from more trauma in the brain, and I didn't realize that my whole life. So I would just half the time just try to deal with it, you know? And did that cause a lot of trauma? Doors slamming—it's one of my biggest triggers, and it's really terrible. Do you have any auditory triggers like that?
Rel: When like multiple people are talking in a room. Oh my god, I have to leave. I can't, I can't stay in the room.
Kelsey: You mean at the same time? Or...
Rel: Yeah, at the same time. Like they're having—so it happens to me often at work, because I do have a job, but they know, you know, I'm autistic and I do have certain, like they gave me certain supports and stuff, but a lot of the co-workers don't know because I try to keep it on a need-to-know basis, which is like a whole another topic too, you know? But so people will stand around me and have conversations, which is fine, you know, you do what you need to do, have your conversation, talk about whatever you want to talk about. But then they'll have like multiple groups of people, and then they start competing with each other over their level of loudness, and then they all start getting louder and louder, and it is just hell. It's a nightmare.
Kelsey: Yeah, so are most of your sensory issues auditory?
Rel: No, I also have tactile, or like the feeling of touch and stuff, and sight. So sometimes lights will be way too bright for me, and it'll make my eyeballs literally feel like little two little balls of fire in my head.
Kelsey: Yeah, do you ever get lightning headaches from that?
Rel: Oh yeah, where it feels like you've been temporarily struck by lightning for about 3 seconds before it fades.
Kelsey: Yeah, yeah, it's really painful. And also migraines run through my family, so yeah, so like all compound, it's okay. But a big one for me, like one of my main issues used to is the tactile one with like the touch, like there's certain fabrics that just—I don't know, it like grosses me out, I can't. And brushing my teeth is a big one for me.
Kelsey: Oh, really?
Rel: And it's yeah, I'm not sure if it—like I'm trying to still figure out if it's the toothpaste, because I use, you know, Colgate, like the adult toothpaste that's really, really minty, or if it's the toothbrush with the bristles. But I started using, you know, like the little kid toothbrushes that are really, really soft? Yeah, and that helps so much. My dentist was like, "Oh, you know, if it bothers you that much you can use your finger to brush your teeth," and I was like, "I don't think I want to do that."
Kelsey: Yeah, I have like a My Little Pony toothbrush, so you're telling me that I have to deal with more textural issues by shoving my finger on my teeth? Yeah, I don't know, that doesn't sound great, right?
Rel: Oh, this sounds like a nightmare, oh my god! And another one is if I'm like, if my stomach hurts or like there's something physically wrong with me like where I'm sick or I don't feel well, and you know how people come like—you know, your family or your friends—they come over to try to comfort you and like rub your back and stuff? I can't handle that. I'll literally feel like my skin's on fire.
Kelsey: Wow, that's really rough to deal with.
Kelsey: So what about clothing? Do you think that impacts your clothing choices a lot?
Rel: Clothing is actually one of my hyper-interests.
Kelsey: Oh, really?
Rel: Yeah, and it's been for a long, a while now, and I do like fashion—I don't like fast fashion, I'm super against that—but I do like fashion, and I've noticed that there's certain things that—and it's not what you think, right?—that I won't wear. For example, in the wintertime, I hate with a passion, for some reason, you know how you wear your winter coat and you go out and you zip up? Yeah, I can't zip up my jacket at all. I don't know what it is, it just drives me crazy. Maybe the pressure of it pressing against your chest, maybe? I'm not really sure, I just—or the roughness of the zipper, maybe.
Kelsey: I have a similar thing. I hate the feeling of a long-sleeved shirt being rubbed against your arm from a jacket. Oh yeah, oddly specific, but I will straight up wear a short-sleeve shirt and a jacket together just so I don't have to feel that. Maybe it's similar to your zipper!
Rel: Yeah, you do what you got to do. You know, like I love jeans with tears in them because I hate things touching the front of my thighs.
Kelsey: Yeah. Oh yeah, jeans are a rough topic, literally.
Rel: Yeah.
Kelsey: So what about things like high heels and stuff like that? Did you ever feel like there were certain things you couldn't wear, or makeup?
Rel: High heels I can wear, but it's not like—I won't do it often, I don't know, it's not something I'd like to really do often. But makeup, I can't really do makeup at all.
Kelsey: Same.
Rel: Because it'll—I don't know, it bothers my skin.
Kelsey: Yeah, every time I wear makeup I feel like I have mud or poop on my face. It's so triggering, like I just can't, I want to just rip my skin off from makeup.
Rel: Yeah, it's the worst.
Kelsey: Was there a lot of pressure in your life growing up to wear makeup?
Rel: Not really, actually, because my mom didn't wear makeup and my grandma was never really into it, so I was pretty good on that front.
Kelsey: Interesting. It's really interesting. So how do you think growing up undiagnosed affected you? Like is there anything that you're doing now to accommodate for yourself that you had not done before because you didn't realize how much it was harmful to you?
Rel: Yeah, I would probably like give myself like—slow down a little, because I was always trying to go fast, fast, fast, but it never worked out, you know? And that's what gave me anxiety.
Kelsey: Did you—and did you internalize other people's expectations of you and how you should be?
Rel: Oh yeah, definitely.
Kelsey: That must be rough.
Rel: Even I feel like everyone as they grow up, you know, you start or you stop caring what other people think as much, but for me it took me a longer—a little longer, I think.
Kelsey: Longer, yeah.
Rel: Because I'm still trying to like break out of that, you know? Okay. Yeah, but it's just part of the anxiety too, and it's—I don't know, something I'm trying to like work on.
Kelsey: So is your anxiety about what other people are thinking or judging you for, or what is it? Is it related to that?
Rel: Yeah, I would say so, yeah.
Kelsey: Yeah, that is tricky. Well, I hope that you'll be able to find solutions that work for you and that help you in your life.
Rel: Oh, thanks. Yeah, I mean I feel like everyone's going on that journey, it's just ours is just a little different.
Kelsey: Absolutely, it's very different. It's like we're all receiving the sensory environment amplified 40% more intensely, and other people just cannot comprehend what that's like.
Rel: Yeah, like with super loud music or loud sounds or noises, or just like—I feel like the world is just designed in such a loud way, you know what I mean? Yeah, like there's—it's unnecessary how loud it is sometimes.
Kelsey: Exactly, it is absolutely unnecessarily loud. So how do you think that being autistic impacted your ability to connect with people in your community?
Rel: I've always been the quiet type, and I don't really talk to people much. So it's—like that—when I was younger they would make me, like they force me to talk to people, but as I've gotten older I kind of—it's like non-existent, the relationships now. Yeah, and I feel like it's isolated myself a little bit, but at the same time like dealing with other people's so stressful, you know? So you either deal with the stress of being somewhat isolated, or the stress of dealing with new people.
Kelsey: Do you think most of that stress comes from the requirements of masking or from your social anxieties related to how other people will respond?
Rel: Probably both, um, because you know, masking, you have to like control basically your every movement. And I know it's different for everybody, but some people, yeah—tone of voice, movements, yeah, your stims in public, and facial expressions, your tone of voice, faking eye contact just so you can get by. Oh, like when I was younger they—or my family—trained me to like do eye contact, you know, because they wanted me to obviously—they knew that there was something wrong, but they wanted me to be passing, right?
Kelsey: Yeah.
Rel: So now I kind of just like stare at people! Oh my god, and I really don't mean to, but and I know it freaks people out, but I just kind of like—I give them way too much eye contact.
Kelsey: I totally went through that same thing in sixth grade. My mom said, "You got to show interest by giving people eye contact, Kelsey," and I was like, "Okay," and she didn't tell me to take a break! So I was that kid who would just stare 25 seconds like, no breaks, you know? I was like, "Well, I want to show interest," and you know, it like freaks people out. They're like, "What the hell is wrong with this kid?" Oh, it did—those were the worst years of bullying I had ever experienced, both physical and mental, probably from that eye contact misunderstanding in part. By high school I had subconsciously figured it out enough to I guess to be able to get through it.
So how long typically for you when you're making eye contact with someone—how long do you usually look at them?
Rel: Um, I'm not really sure. Like I try to look at them the whole time we're conversing, and then the whole time I'll try to not—the whole, like I'll look away because I know you're supposed to, and I'll look back, and then I'll stare, and then the look away. So I'll look away and then I'll look back at them.
Kelsey: Yeah, so you kind of copy what they're doing.
Rel: Yeah, yeah, yeah.
Kelsey: That's—go ahead, sorry.
Rel: No problem. Yeah, masking is is tricky, because masking—do you think masking is different in different cultures?
Kelsey: I mean it has to be, because different cultures have different rules and you know, there's different social rules and unwritten rules and all these things. So like my mom is Dominican, and you know, a lot of Spanish people are a lot more touchy, like they'll kiss on the cheeks and a lot more hugging. Whereas like I don't know, my—my dad's side, they're like a lot a lot more cold, because he's mixed—he's black and white—so they're like, they're not like some of the family is a lot less touchy.
Rel: Yeah, so when you're meeting someone in a different culture, how do you know how to mask?
Kelsey: Honestly, I do the same thing for everyone, because I can't stress myself out any more than I'm already stressed, you know?
Rel: Yeah, I feel it's alienated me sometimes, but you know, you can't win them all, that's that's like where I've come to in my life, you know?
Kelsey: Yeah. Well, I'll give you a small tidbit, if you're interested, that might help with masking if you ever needed to do it—because although it takes a lot out of us, it can also be an incredibly important survival tool.
Rel: Oh, for sure, yeah.
Kelsey: So most people, neurotypical people, typically will look in the eyes for between 3 to 4 seconds and then look away for about 2 seconds. So you might need it someday you're in a meeting with a manager or whatever, you know. There's just there's so much information encoded in body language that as autistic people we can't really see, and it's really tricky because you don't know how you're going to come across. And I think because of that you can't really spend too much time thinking about it, because if you do you'll just drive yourself crazy.
Rel: Oh, absolutely, I totally agree. It's difficult. Do you feel like for you masking has had any downside? I know it does. It drains me out a lot, and I can only really relax when I'm not masking. Yeah, but then it's come to the point where I've done it for so long, so often, that I kind of do it all the time, and I feel like I'm unconsciously stressing myself out.
Kelsey: Yep.
Rel: So I have to remind myself to relax and just calm down.
Kelsey: I can relate to that a lot. One of my masks was smiling at people in every single picture. Pretty much there's maybe only a handful of photos of me as a kid not smiling, because I didn't realize—I didn't realize that it was harmful. It was a mask for me, so even if I was about to cry or about to, you know, have a meltdown or whatever, I would still smile because it had gotten me through so many situations that subconsciously I kept doing that. I had been masking my whole life, even when I was alone. And I was analyzing it before I got diagnosed, I'm like, "Why am I—why am I smiling slightly right now? Like what's going on? Like why am I doing this?" I was just in total darkness because I didn't realize. I completely relate. What kind of masks are you do you use that have been rather difficult to let go of when you're alone, if you feel comfortable sharing?
Rel: Oh, no, that's fine. Yeah, like I feel like the tone of my voice and how I act sometimes, because you know, I try to act in a way where I don't upset anyone. Yeah, and then I feel like as a kid that's a lot more important than as an adult, because you're an adult, you know, you can speak your mind and it's just something that most people do, so it's not that big of a deal. But to us it takes more energy.
Kelsey: Yeah, exactly, because we don't have that intuitive framework to be able to do it, so we have to consciously think about it.
Rel: Exactly. And then I also—I try to stim when I'm by myself, but I've gotten so used to not doing it that sometimes I forget, and then I'm like, "Why am I so anxious right now? What's going on?" And then I'm like, "Oh!" And then you start stimming and you feel better.
Kelsey: Yeah, yeah, I can relate to that so much.
Kelsey: So how do you think your life would have been different if you had been diagnosed from an earlier age?
Rel: I'm not really sure.
Kelsey: I know it's a hard question to answer.
Rel: I know, right. Um, I would have probably had more support just in general with like social development and all those things, but at the same time I don't think my family would have been able to give me the adequate support regardless, simply because they just didn't know about it. And even if I was like—yeah, or diagnosed with it—I don't feel like they would have done anything with that information.
Kelsey: So you don't think it would have changed a whole lot?
Rel: Probably not. It's interesting.
Kelsey: What about internally? Do you think that if you'd known from an earlier age that maybe you wouldn't be so hard on yourself or set expectations where there shouldn't have been?
Rel: I think so. But I mean, regardless of like whether you're diagnosed or not, I feel like as a kid if the people around you don't really care or they don't acknowledge it or don't help you out in any way, it wouldn't really matter—at least to me when I was like a baby, because...
Kelsey: That's an interesting perspective, I really appreciate you sharing that.
Rel: Yeah, no problem.
Kelsey: I kind of have the opposite view. I think it would have made a big difference for me because then I wouldn't have been, you know, judging myself for not being able to handle what other people could, especially sensory-wise. Like one of the biggest things I've started doing since I've gotten my diagnosis is accommodating for myself in ways that I wouldn't before: earplugs, headphones, sunglasses. I mean, I did minimal accommodations when I needed to, but that was more of a last resort, like, "I'm feel like I'm about to die, get close to a meltdown, I need to put this in right now or else." Now I'm starting to do it in advance of all of that, so if I hear even the slightest noise that makes me feel slightly anxious, I'll put in earplugs immediately to be able to reduce that and regulate.
Rel: That is a good point, though. I didn't think of that. So you haven't really experienced that from your perspective?
Kelsey: I mean, now that I know, yeah, definitely I've experienced that, like I'll start—for me, I generally—I call it like, "I start freaking out," and it's pretty sure it's a panic attack or anxiety attack because my body is stressing out and I don't know what's wrong, so I try to prepare for that as best as I can if I can't stop it or avoid it.
Rel: If I can, yeah. You think most of that is from sensory overload?
Kelsey: I mean, yeah, I think so.
Rel: What kind of accommodations do you think would make your life easier in society or otherwise?
Kelsey: If they didn't put fluorescent lights in every building ever.
Rel: Relatable, great!
Kelsey: Yeah. Anything else? Like I'm also thinking, you know, socially, you know, I feel like everyone who's different in any type of way always wishes that people were more understanding or accommodating, and not in a way that they're forced to, like legally, you know? But—I'm not really sure, I guess more kind to each other and understanding. And not even—like at a certain point, I didn't need people knowing, and if they did know it was like it wasn't a secret, but if they did know—hold on, I forgot what I was going to say!
Rel: No problem, it happens a lot to me, at least I know what it feels like.
Kelsey: Yeah. Like if they found—they don't have to like understand the differences, you know? They just have to respect it.
Rel: Yeah! So if you tell someone, "These are accommodations that are necessary for my well-being," you expect them to uphold that boundary and listen to you and believe you instead of gaslighting.
Kelsey: Right, yeah, exactly. Did you experience a lot of that like when you were a kid, like someone's playing music and you say, "This is too loud, it hurts my ears," and then they don't believe you?
Rel: Oh, absolutely, yeah. That happened to me all the time. So I think I got so used to it to the point where I do it to myself, and I know I have to stop doing that.
Kelsey: Yeah, it's—it's so difficult. I'm in the same exact situation as you. You get so used to just letting your needs go unmet that when you finally figure it out and realize that you've had a choice in it the whole time, it's like, "Hey, wait, you're saying that—you're saying that all these times that people told me to just deal with it, don't be so sensitive, all of these harmful things—that I was actually experiencing life in a more intense way than they were this whole time?"
Rel: Yeah, exactly! It's really eye-opening to be able to see that, and I feel like in that moment was when I truly became my own advocate. Because before that no one was—I mean, not really, no one else really knew how much I was suffering from sensory overload. And I feel like the sensory issues really present a challenge socially too, because if you have to leave because things are too loud, if you have auditory processing disorder and you can't hear what someone's telling you, or if you have facial blindness and can't remember someone's face, people all think that's a sign of disrespect.
Kelsey: Yeah, exactly. And it's not—it's not at all. And in fact I would even say that as autistic people we probably remember more and care more about other people in that respect.
Rel: Absolutely. I feel like the empathy is magnified like 100%.
Kelsey: Yeah. But people don't—we don't like show it in the same ways as neurotypical people do, so they find it like disrespectful or it's just not there.
Rel: Yeah, yeah. Just—hey, I kind of have to go.
Kelsey: Okay. Well, thank you so much, I really appreciate you willing to be on this episode, really means a lot. Do you have any last words you'd like to say to the audience, anything about like what you wish neurotypical people would understand about autism?
Rel: Um, let me—I don't know, like everyone—everyone experiences everything differently, so it would be the same thing for autistic people as well. We all have different symptoms and different stims and different experiences, and even though everyone's is different, it's all valid.
Kelsey: Yeah, I like that a lot. And you know, we're all dealt different hands in life, you know? Some people have like a full flush, and then some people have like three Uno cards and a joker, you know?
Rel: Yeah, but you got to play with what you got.
Kelsey: Exactly.
Rel: Yeah.
Kelsey: I come from a pretty privileged background, so it's been up to me to be able to realize that privilege and to be able to try to learn about other cultures and other perspectives.
Rel: And I mean I do appreciate you doing all of that, because you know, some people, especially from privileged backgrounds, they just don't care, or they don't care to learn or empathize with anyone who's different from themselves. That's really amazing to do, you know? Or they deny it.
Kelsey: Oh, yeah, that's the worst. It's like, "All right, all right." Well, I really appreciate you meeting to talk with me today. If you would like, I would love to have another segment too if you want to keep talking about your autistic experience, if you have anything you felt like we didn't cover today.
Rel: Oh, absolutely, yeah. This—I had a lot of fun today and I would have loved to hear more from your perspective, you know? I honestly don't meet many other autistic people, and I know it's because I'm like neurotypical-passing, especially being a woman of color and you know, not people's whole interpretation of what autism is and all that. So I would love to hear more of your perspective.
Kelsey: I really appreciate that, and I really appreciate you being willing to share. Just for all the viewers to know, we have actually never met in person. This was our second phone discussion ever. And you can probably hear from this discussion that autistic people are pretty open.
Rel: Yeah, I always try to be, I don't know, open and easygoing, because you know, we're under so much stress constantly, why make other people stressed out, you know? There's no need for that.
Kelsey: Yeah, and maybe someone else is going through what you're going through, and to be able to meet them at that level of vulnerability can help everyone.
Rel: Exactly! It's so nice to hear like people you can relate to. It's so nice to not have to have a translation process when I'm talking to you. I can just speak my mind and you understand it inherently without me needing to change it in any way.
Kelsey: Exactly! Like, don't you hate it when people get offended—like, I'm not talking about like, oh, you know, let's say 20 slurs, no—like they think you're insulting them or like, "Why did you say it like that?" Like, what?
Rel: What did I say? How did I say it? What are you talking about?
Kelsey: A common one for me is I'll literally say exactly what—like the truth, like what exactly happened—and they'll be like, "How could you?" and I'm like, "What are you talking about? That's literally what happened!"
Rel: Oh yeah, people say they want to hear the truth, but they really don't. People want to hear lies, unfortunately. And yeah, it can be really frustrating to deal with when you tell the truth in a society of lies.
Kelsey: Oh, for sure. And then you can't tell, like, all the lies—it has to be very specific ones. And just, come on guys, make up your mind!
Rel: Yeah, and then you have to try to figure out, okay, wait, is this the situation where we're going to lie, or is this the one where we're going to tell the truth, or like, which one—which path do we follow here?
Kelsey: Exactly.
Rel: Difficult and confusing.
Kelsey: Yeah. Was there anything else you'd like to mention, Rel?
Rel: I would just like to say that no matter, you know, what you identify as, or you know, like sexual orientation, or if what disability you have, or like anything that's considered, you know, not typical, there's nothing wrong with you. There's there's nothing wrong with you, and you're fine just the way you are. Sometimes, you know, you see things a little differently, or you know, you experience things differently, or I don't know, you look different—it doesn't matter. There's literally nothing wrong with you. Everything is made up, you know, time doesn't exist. You are who you are, and you should embrace who you are, because who you are is amazing.
Kelsey: I love it. That's beautifully said. Beautifully, beautifully said. Yeah, autism is not a disease, it is not an illness, it's a different brain wiring—like having a different operating system—and that's okay. Or like, and it does not need to be cured, okay? It does not need to be cured. If someone tells you they can cure autism, walk away. I mean, there's so many harmful, harmful therapies out there, it's ridiculous.
Rel: I know. And it's not even that bad, you know? Like you can have a little bit of accommodation and everything would be fine. Even people on level—support three, right? You just give them a little accommodation or what they need and it'll be fine. People are people—just treat everyone like a person and you'll be good.
Kelsey: Yeah. I think maybe a lot of times people get threatened so much by people who are different from them because they see the aspects of themselves in other people that they don't want to see, and that's what they're afraid of.
Rel: Yeah, I think that's so true. Especially like in today's climate, whether it be political or like, you know, just anything—any topic is controversial now, which is ridiculous. But yeah, I guess it is what it is, right?
Kelsey: Yeah, so they try to knock other people down socially so they can gain bonus social points. It's just—it's kind of a stupid game, but it's one that we have to play in this society. It's like—remember that one, have you ever seen that one show Whose Line Is It Anyway? The game isn't real and all the points are fake!
Rel: It's a bit like that! Exactly, yeah, it's a bit like that.
Kelsey: Well, thank you so much, Rel. Really appreciate you meeting today, and I would absolutely love to have more crossover episodes like this in the future. Feel free to tell me your YouTube channel either on chat here or I'll definitely link it to the podcast as well, and I'll be sending you the audio so you can post it if you want.
Rel: Sure, yeah. Thank you for having me, I had a lot of fun. This was really great, also super insightful. It's always good to hear different perspectives.
Kelsey: I love it. Yeah, really wonderful. Thank you so much for sharing your perspective, it really means a lot.
Rel: Oh, thank you for having me. Anytime!