Functioning with Autism

Hello and welcome to Twice Exhaustional, teens exploring and living with Nordiversity. I am your host Kate, I am 16 years old, the middle child of 3 and I injured my feet the other day because I forgot to wear socks. Before I put in the vow, I have ADHD and I am gifted, making me twice exceptional. I started this podcast because living with ADHD can be difficult and I wanted to find a way to reach people and share some information from the perspective of a Nordivergent teenager with a Nordivergent sibling. So in this podcast, I discuss my experiences living with ADHD, interview guests and I've researched different aspects of Nordivercity. So for today's episode, I have the chance to interview one of my friends Celeste. Celeste is an autistic teenager who was willing to talk to me about her experience with having autism. She was diagnosed about one year ago, she is 16 years old and I can't wait to have an interview with her. Rejoining me Celeste. Oh thank you so much, I'm really excited to be here. Okay so for the listeners can you tell me a little bit about yourself? Well hello my name is Celeste, I was diagnosed with autism in November of 2021, I'm 16 years old and I am a Puerto Rican American. That's very interesting and when did you first hear about autism in general? I had to be around, I had to be like 8 or 9. I always thought that I had some form of ADHD growing up, I was always told that I had ADHD by my mother and one day I was like researching it and I think I was like with MD or something actually. And in the suggested box, it was autism and I was like, oh what's that? I think that's how I found out. That's how you first looked it up. It was your mom the only one who told you you might have ADHD or did like other people tell you that. A lot of people actually tell me that coming up, I was a very disorderly child, I think I was a very quiet person as I was alone today. I don't know, I wasn't like I was a violent necessarily, I didn't know my own strength. I was told that by teachers or my parents were told that by teachers, I was told that I saw a school guidance counselor, I was in there almost every single week or day sometimes if I didn't feel like going to my elementary school classes. I don't know, I always just always told that. My mother who started telling me this first was told this because when I was like maybe like two or three years old, I obviously don't remember that but I was, I exhibited a lot of symptoms of ADHD, I guess, and my mom asked, oh no, I exhibited a lot of symptoms of autism, I'm sorry. And my mom asked her friend who studied a form of pseudo-psychiatry and she said no, no Celestia has ADHD, not autism. That's interesting. Okay. And then what was your like like before your diagnosis? I know that was a very long time of your life. Is there anything just in general? What was your life like before my diagnosis? It was mostly fine actually until the later years of middle school but I feel like later years of middle school. And middle school in general was kind of just like hell for anyone who didn't necessarily like fit in. Yeah. If you're not then no one will get in. Yeah, no totally. And I don't know, I guess, sorry, it was a question. What was your life like before your diagnosis? I started to like not show up to school a lot. I struggled with eating actually. I struggled with eating or struggled with like showing up to school. I struggled with like maintaining for myself and you know, we got to school together. I'm sure you notice that I'm not there every single day. Yeah. That's because being in like social environments stresses me out to no avail and I cannot physically handle it a lot of days. Okay. And so you were diagnosed, it was like a year ago or something. I was diagnosed 2021, November 2021, so not even quite a year ago. So why were you diagnosed? I was seeing a school, no school psychiatrist. I was seeing a school, I was like, I was seeing a school psychologist and he saw me basically every single day. I would constantly cut classes to go see him. I would see him for hours on end. One day I stayed in there the whole school day. I was just like talking with him. And he was like, wow, this seems bad. You seem like you have like some sort of like possibly like conduct disorder. But he died, he got like the day that I stayed in there the whole day. It was because I was being diagnosed with MDD and they're looking into possible like, they get it, possibly like an emotional disorder or some kind. And I was just like sort of in there and he was like, hey, we need to refer you to the school like psychiatrist because this is getting to a point where like we're like seeing you like exhibit a lot like the symptoms of autism. And they're like, oh, it's very, it's very high functioning. Like as if like saying like, oh, you have autism. It's okay. It's high function. It's fine. Like it's just like don't say that sort of thing. Like if you put autistic friend like don't say that sort of like don't say, oh, I can't even tell because like people say that to me too. Oh, I can't even tell you how they did. And I'm like, okay. Wow, Julie, thank you. I guess is that a compliment? I don't know. It's not necessarily a compliment. It's kind of I don't even want to go into this. But like, yeah. I don't know. I guess I just sort of like struggled with. I saw a struggle with like going to school and maintaining my health. Yeah. And so then you went to the psychiatrist and they diagnosed me. They diagnosed me. Yeah. Okay. And then so what were some major changes that followed this diagnosis? I feel like people start taking me a little less seriously. So I've always been an all-a student. All-a's I've always been a very smart person. Yeah, I can say that about myself. I'm a very smart person. I'm very well educated on a lot of things. And I feel like people just started to like say because I was diagnosed with aspergers specifically. And number one, that's not a real thing. But number two, people just started to like take the merits that I had kind of like always like had for myself and say, oh, it's because you have aspergers. Which no, it's not. It's because I'm a smart and like well-researched person. It's because I study things on my own. Like you're, you're, I don't know. That's just so stupid, you know? So yeah, that was a major change in your life then. And then you moved to Arizona shortly after, right? I moved to Arizona just on Virginia where I believe. Uh-huh. Okay. And then do you have a specific story that really shows what it's like to live with autism? Do I, I don't know, I guess I just like sort of just like my struggle with, well, I guess this is interesting because I'm on a podcast right now where the only thing you can kind of hear is my voice. But like for the first maybe two months of school, like attending school, I did not speak at all. I was not much. Yeah, I, I'm not much. And like the first month of school, I know I did not speak one. So I was like, yeah, like I need to talk more. And my partner was telling me like, hey, like I know that like you, like you kind of like struggle with like with talking, but like, you know, like you've got to like start like kind of like making these connections because you're going to probably be here for a while, you know? And that's like yeah. Um, I don't know, I guess it's just like sort of just, I've always struggled with talking, I've always struggled with just like communication in general and just like, I feel like my autism diagnosis definitely helped me a lot for that. It's no longer just like, oh, you're so shy, just like to talk or something. You know, it's now it's like, oh, I have a mental disorder and you know, I guess not 10 of my mental disorder. I have a neurological thing and like, yeah, I should, I should, oh, wait, no, this is, this is the story that I want to tell it all. I'm sorry. It's fun. I'm going in for a 504 and you know, um, you know, the, what is it called? The, the count of the counselors at our school, like, yeah. Um, I think I have like Davis, but I have bored. Okay. And she's sweet. She's nice. She kept in contact with my mom a lot just because, um, you know, she's like, oh, are you fitting in okay? Like, let me, let me email your mom like five times a day just like see if you're doing okay. Which is very sweet of her. I'm glad that she was like, looking out for me and that sort of thing. But I went in one day and I was sort of talking with her and I forget, oh, it was because I wanted to like do some like college. Like I wanted to like do a college thing over the summer. Like I needed like some form of like verification from the school district. And I was like, okay, I'm also at Carey Board because I think what they're asking for is like a counselor or something like that. And I was, and I was talking with her and I was like, oh, by the way, I wanted to bring up. I think I might want to get like a 504 or something because I have autism and she was like, no, you don't. And I was like, um, what do you mean? And she was like, I can always tell when people have autism and believe me, you do not have autism. And I was like, I was diagnosed. I was diagnosed very recently. Like, yes, I most certainly do. And she would just would not take me seriously. I just, that is so annoying. Yeah. And she is an admin on our school. And like, you know, like she sees over all these students and like I'm pretty sure I was going to her. some say over like, you know, special education and like special needs and like how this are attributed to like people who aren't necessarily in special needs programs like, like the glasses there and like, wow, like you wouldn't give me a fable for because you think I don't have autism based on like your autism like radar or something like what the hell are you talking about? - I get that for sure. I feel like it'd be very difficult to get a fable for for like people who aren't like failing school and just kind of annoying because like you can have conditions and still not be, yeah. - Yeah, like for what I get a, - For what I don't have in, sorry, for what I have an academic merit, I don't have in social skills. I'm very, it's mostly just like, yeah, oh yeah, yeah, I understand, you know, like that's like, like that's most of our conversations outside of this. - Yeah. - And most of my conversations in general, I just have always really struggled with like, just like having social connections. - So you've had some issues socially based on your autism but I'm sure you've had some connections that you've been able to make. - Oh no, somebody, like the first day of school, I had like five or six rounds or something. - It's nice. - Yeah, you've been able to figure it out for some things. But in general, it just, is it that you don't like talking with people 'cause it like, you're worried though, drudgy where you're just not like talking to people. - I just don't like talking to people. - It's just not fun. - Well sometimes I physically can't bring myself to, like sometimes I just like clamp up and I just can't say anything. That's why I was like writing stuff down because I could not physically say anything. And now it's mostly just like sort of just like, or what is it called? When you inflict something upon yourself, self-inflicted mutants, I know it's not the correct term. Like something like that. - Later. - How has autism helped you in your school and like career in general? - I guess, no, I can apply for a different scholarship. I can apply to so many scholarships now and I'll probably have to get it on one. So thanks autism. (laughing) - So yeah, and then has there any been any significant struggles minus the like, social not talking part? - I guess just not necessarily with me, but more so just like it, as you can tell it, it took me a while so I got a diagnosis at all because when I wasn't like studying ADHD, I was like studying autism and I was thinking like, oh, I think I should get diagnosed and I had a therapist for a while who was Susan, I love her so much. And she was like, oh yeah, you're very, very clearly exhibiting traits of, she said, as burgers, I'm just gonna say, she said autism, they're the same thing again, you know? - That makes sense. - But yeah, I've always, like in like medical professionals in my life, and then the ones like who didn't handle the diagnosis, but like they're always like, yeah, you have like autism. Like you have like something, something is wrong with you. And I don't know, I just, yeah, you know. - That's interesting. - Yeah, with me, nobody even like realized anything was wrong and told my brother was diagnosed. And then they were like, huh, you actually have these. Maybe we should consider that. - Yeah. - Like I feel like men are always considered first before women, especially in the family. - Yeah. So then what part of autism do you think needs to be addressed more and why? - All right, well now I can finally talk about the thing I've been teasing this whole time. My thoughts on Asperger's high functioning low functioning that sort of thing. First of all, let's have some like background. The word Asperger's, or sorry, the term Asperger's, it comes from, I forget it's first name, it's like his last name is Asperger. That's all it matters. And he was a UHSS, he like believed that like racial mixing isn't really something that we should do. He believed that Jewish people should not be alive. And he also thought that like, I don't even wanna say the word, but he thought that like we shouldn't be like, we shouldn't be reproducing with, you know, like people who like have like low functioning autism. So he created the term Asperger's to kind of like differentiate like, well here's autism. And here's Asperger's, they're so smart. It's just that they're a little bit shy, you know? And I don't like that like really severely pisses me off because number one, it creates a hierarchy. It creates a hierarchy based on like something that like, like someone from the outside like said it. It's a lot like the concept of race in that way. Well, it's not, but like, you know, like it creates, it's basically just like a hierarchy like based on like traits that like someone from like the outside decided. And I don't like that. It creates just like, I don't know, like not a lot of inner conflict, but it creates like a lot of just like inner like tension. Like well, now, well I'm better than you because I have Asperger's and you have like low functioning autism, you know, it's just like that sort of thing. And there is that kind of dichotomy in the disability community, like in general, like for especially if like mental disorders, where we feel like we should be pressured. And obviously we do have to mask because society, I don't know, isn't at the point where like we can confidently be like, oh yeah, I don't have to mask in public. And I won't be like looked at, I won't be like shamed. I'll be able to just like be around my friends and just have a have a good time, you know? So it's it's not like that, unfortunately, in this day, and it probably won't be for a while. Well, maybe ever. No? Yeah, I didn't know that about the names. That's interesting. ADHD has a lot of name problems, especially with the ADD versus ADHD mess, but then also like the fact that it tends for attention deficit, high-brought-to-be-dissoleter, that's kind of a problem. The same thing with like autism spectrum disorder. I'm like, you don't need to call these disorders. Because I feel like maybe like, what is it called? Because they're both, aren't they both neurologically, like specifically like what is it called? Like, aren't they both things that you're born with? Yeah. And they're kind of not different. Yeah, they can't be disorders. Like, what is it called? Like psychologically speaking, you can't have a disorder if you're born with it. Yeah. And then, so that's kind of the main thing you think needs to be addressed more than-- Oh, but could I ask you about something? Yeah. I never really, like until you brought it up, like maybe a few weeks ago when you asked me to be on the pod and-- Thank you for inviting me on the pod, anyway. What is the difference between ADHD and ADD? So basically, ADD is technically the old name for it. And it was the name in like 1980 to 1987. And the message is ADHD. And now there's like subtypes or whatever. But like, a lot of people still use ADD to refer to any form of it or the form without the hyperactivity part, even though technically that's not like a proper term. And a lot of people just don't know the difference. So like, they'll just say ADD and be like, no, it's ADD. And I'm like, oh, OK. Yeah, like correcting you on something that you have. Oh, yeah, yeah, OK. Some people were diagnosed at that time, because like the '80s and '90s wouldn't diagnose this as a start of picking up, obviously, because people started actually thinking about it. But then one more question-- Well, there's like two more questions. But do you tell people that you have autism regularly? Or do you usually avoid telling people? Oh my god. Hell no. Hi. I would never say like at our school. Or gosh, even online. I would never say I have autism. Because there is so much social stigma around that sort of thing. Especially I think also for ADHD, because like there's the image for ADHD of just bouncing around on the walls. And if you don't fit that exact bouncing around the wall, you're always being like, oh, what did you say? Oh, squirrel. Like, gosh. Like, yeah. Like, I remember growing up and hearing those jokes all the time. And they're obviously still prevalent today, because I babysit and gosh, those jokes are still there. And even within adults, they'll say very-- so obviously not to the level of just like, oh, squirrel. But I feel like there's very specific social stereotype of just like the autism being like, oh, nerdy and shy and reserved, or just like not functioning at all. Like being completely degraded and like the human eye is like, I'm sorry, I won't touch with that. You can do that. Yeah. Being completely degraded and like not even being really seen as like a human just marked just like like a-- I don't even know what. Just like not seeing it like the same level that a human is. And just like, no, I would never say that. I don't think I would-- I honestly have a hard time saying things like, oh, I was diagnosed with major depressive disorder. I feel like that's like a very-- I feel like nowadays, especially like a very normal diagnosis to have. I mean, I think, yeah. It's interesting. I feel like ADHD is not that bad anymore. Like, yeah, there's stereotype. But overall, I feel like there's less judgment because a lot of people have it. But a lot of people also say they have it when they weren't diagnosed. And that annoys me. But like, yeah, I get the not wanting to tell people because they treat you differently. And it's really annoying. So that kind of leads into the next question, though, about what stereotypes have you faced? Like, people think certain things because they know it. Against me personally? Just in general with autism. Whether it's a personal story or just with other people you've seen. I guess just the whole smart thing. And kind of just like my inability to-- or I guess it's getting better at school. I think it's just more so in this-- oh, gosh. And I feel like such a-- I feel like there's a neurotypical person trying to cause plain autistic person saying this. But yeah, of course we're all going to be quiet or new social settings. But for me, it's just so bad because I just can't speak at all. And when I do, it's like-- like monotone and just like just comes out and it's just like so like rude and blunt and like just I don't know I just I feel like Yeah, I feel like that's kind of just like my struggle like personally It's just like having to deal with the stereotype of just like oh well you're not just like you're not really like that Talkative and when you are it's like all smart stuff like oh and then the train thing to you know like oh off all Just people like trains. Where does that even come from? Do you know what I'm talking about? I don't know Don't know where that stereotype came from Only reason I could train thing. Yeah, the only reason. Yeah, I don't know. I have a friend who Has a brother who's autistic who does like Thomas the train, but like I don't know what that stereotype would have come from Anyway, so random Um, and then the last question and then we can also talk about the gender issues if you want but what can friends and family members do to provide support for you? Um don't look at autistic people like a monolith. It's called It's called autism spectrum disorder, which I don't like but it's an autism spectrum like there's gonna be people who are like There's no people who like don't face the same issues at eye face and like can like talk people It's more just like like like eye contacts and just like like like maintaining like grades and that sort of thing and like you know just like And there's gonna be people who just like or are like me who and there's gonna people who are like me at all And like don't have any like I don't have any like reference like compare them to because like it's a disorder It's a spectrum. It's what I meant to say. I'm sorry. It's a spectrum and like very much so like it's just like you can't compare Like I mean always do you can compare individual experiences, but like you can't compare Like a whole community Against each other. Yeah, and also and number two people shouldn't look at ADHD like it's autism light We not yeah, it's not and they're different conditions totally and I have a lot of things in common With you and you have a lot of things in common with me Because the disorders have a lot of symptoms in common. Yeah, we are not the same No, there are a lot of differences in symptoms too Like it's just some of them can be perceived as similar. I feel like But then yeah, the final thing is did you want to talk about some of the gender issues surrounding autism? Oh totally, but I would like to hear but like because you did a research project on this and it was really interesting And I'm planning on actually doing an episode on the gender issues with ADHD later But like yeah, I did a lot of research on it a lot of it had to do with masking Because girls massler symptoms mainly that was to tie it into the stimulus packet though Like because there's also a lot of parts of it where it's like There's that stereotype for ADHD, which is the young boy who zoned out in moving around and causing problems And if you're not the person who's causing problems And you're not a young boy who constantly isn't moving Then people don't really consider it that often like my personal story at least is like I was taken in after my younger brother obviously, but like besides that Went after I was taken in like I had good grades and that shocked them when they gave me the diagnosis They were like it's weird because you have straight A's and the reason I was diagnosed because they did like a test thing And I did well on it or whatever, but like I kept moving in the classroom that they were testing me and so they were like I mean yeah But like also a lot of girls don't have high practice symptoms I do but like not all girls do And it's basically if you don't fit the one stereotype they don't really consider it Oh totally, yeah Now what is it called? I would really like to hear I feel like I'm bad It's fucked I'm sorry You're yet I because you have stated that like most of like you're masking and most of the masking angle came from the stimulus packet I would like to hear your race like your research on a bridge like like I really want to hear just like Why I plan on doing that so why talk more about it, but like I add my personal story in and you Those stimulus packet helped me with the masking thing but like in general It's basically the girls tend to mask those symptoms a little bit more or more so Teachers don't notice when girls master symptoms more because boys to never heard of time masking their symptoms because Impulsive control is kind of an issue with ADHD And also a lot of teachers don't know what to look for with girls with ADHD Which since teachers are now kind of the ones who have to recommend it because we don't have a great system in place Causes a lot of issues there when the teacher doesn't notice and It's a it's a two two two point five to one ratio right somewhere around there a lot of studies and different things But I was trying to find it up to date one yeah And for autism it's like four to one it's four and a half to five I read I tried to do a little bit of research before I came onto the podcast that's pretty bad It's it's pretty awful. Yeah Uh, I feel like an autism. I don't know like when And we've had this conversation before definitely a little bit yeah, but like when men Like when when men have like the symptoms of autism. It's like kind of just like immediately noticed, you know It's and I'm gonna I'm gonna say this in some thoughts in broadly But what I'm referring to more so is just like you know like the social reclusiveness on the outstanding smarts the kind of just like Academic merit without like kind of like the friends to pack it up, you know Yeah, I feel like I feel like that's more so a thing We notice in Men compared to women I would say that makes sense. I can see that yeah, I feel like I feel like This but again, especially like girl and people who are socialized as girls were What is it called kind of mask more a lot because we have to like the girls have to mask a lot more in society You know like we live in a patriarchal society and we definitely have to mask a lot more So I feel like definitely that's the other thing the pressure in placed on women in general to behave a certain way Means they're more likely to like master symptoms younger because they're told you have to act like this where boys It's the oh boys will be boys. Yeah totally and just like I don't like in general like like like docileity and shyness Especially in women is kind of just like like as a desirable trait So when like autistic women or an autistic girls too when they showed those sort of traits It's not like a oh you have autism like like you would like say in guys It was more so just like oh you're so reserved and so quiet and so modest You know like oh I you know like I wish girls were more like that like when I was growing out sort of thing you know like yeah I can see that and then did you also want to talk about the racial issues or totally yeah and then you can weigh on this I don't know that much about the racial issues this but thank you I'm going to talk about the racial issues and and self-diagnosing in particular but just because like Um this is something that I've done a little bit of research on just because uh interest yeah just because of interest um Uh we were talking about self-diagnosing earlier and you were like oh when people with ADHD self-diagnosed And I know it's not how you meant it and we've talked about this before obviously it's just like it's hard to say like when people with ADHD When people without ADHD self-diagnose um you can have ADHD and self-diagnose obviously and I'm not like trying to like say like I know like you're talking to them totally it's just like what is it called like the thing is And I know I look white it's it's a weird thing to say this because like I know that I'm very much like white passing um but I don't know like uh I feel like I'm saying like but I have like I have I have I have Latino friends I have Latino I have Latino family um do have been diagnosed who are more Latino passing than I am And then you know that's fine like obviously like I wasn't always white passing like when I was younger especially like I faced a lot of racism Trump was uh Okay, what was the question? Oh yeah the racial racial bias sorry Yeah, I'm not for the tension here racial bias and how it like pertains self-diagnosing so Um and it's called people of color and especially women of color um kind of don't necessarily have the resources to get an official diagnosis And for some it's because of red lining because I've lived in this country for like so many years like you know like they were able to experience they experienced um segregation they experience like kind of just like red lining and like being like forced into like American gettos And that is awful and that also means that they don't necessarily have the intergenerational wealth of like like white people And like people who are even like new to this country like who just came here didn't necessarily have to experience like red lining but like may have experience like you know like what is it called like like the wage crisis Like between the men and women that that also exists for people of color Uh-huh Obviously Yeah And uh yeah so they might necessarily have as much resources and when they do It tends to be like like what I was saying earlier like oh well you don't have autism Like just kind of like that like quick like judgment like oh I won't even like say anything And plus the medical community and obviously it's getting better but like In a broad sense the medical community tends to not necessarily listen to Women of color when they say I have this and I've been experiencing this Because society is so against women and people of color and we just kind of have to be like the We kind of have to like be like the worst of all I like we have to be talking about I'm not a personal color but really you're not Cuz I'm forming in general I know in the medical community cuz like even earlier in our other part If we talk about maternal mortality rates, and I'm like the medical community in general There's a lot of bias there where if you are not Necessarily like a white man. They won't listen to you when you tell them stuff And so you're like I think I have this and they're like no Yeah, and this is this is especially true. I'm not a black person. This is especially true towards black women They I believe experience the least amount of diagnosis rates of autism and that is not That's not like just like oh, that's such a weird coincidence. That is because we that's because people of color are not listening to and especially black women Yeah, I could see that being part of the issue like in maternal mortality rates too They also see that that same racial gap layer a cow Part of that is access part of that is also though like even when they have access they might not trust their medical people as much Absolutely, because like it's how to trust them when they haven't given you reasons to trust them I don't think I've ever trusted a single psychiatrist I've ever been to apart from apart from one and this is not Susan I know I sorry I'm talking about psychiatrist and therapist. I love Susan But she did not listen to me necessarily, but I had this one Therapist who is also a Latino woman. I loved her to death and I had to stop seeing her recently She understood me. That's great and so thank you for coming on to the podcast No worries. Sorry. We kind of got a little grim here with that whole hotel It's kind of a dark ending. Sorry So before I wrap up this episode, I just wanted to discuss some of the future projects I have been working on For episode 13, I am gonna be doing my gender bias presentation You heard a little bit of the snippets of it during this episode when I was talking to Celeste My gender bias presentation focuses primarily on ADHD But I would like to do one later on autism as well as dyslexia So that one I'm very excited about and then also I know originally I said that this episode was gonna be the one where I talked about rejection sensitive dysphoria But I got distracted and things happened and I ended up having that great interview instead So that one is still gonna be on the books. It'll just be moved down a little bit later And then also I was able to get some more work done on getting an interview with Mike Walker He accidentally had my phone number blocked. It's like a full story But basically we're gonna be getting an interview done with him pretty soon as well And he's gonna talk about ADHD and working with athletes with ADHD So I have a lot of exciting things plans But if you enjoyed this particular episode Please consider following our podcast on TikTok and Instagram at twice underscore exceptional podcast and if you have any questions Please reach out to twice exceptional podcast at gmail.com I would love to hear from you One more thing if you are interested in actually being interviewed on this podcast That is an option just reach out on the email and tell me a little bit about your story and why you think you should be Interviewed and I would consider doing that interview. Thank you