99: Bonus Episode: Autism (actually) Speaks, An Interview Mashup
In today’s episode, you’ll hear from three guests about their autism experience and their perspectives on common stereotypes about autism around communication, relationships, and more. This is a bonus follow-up to our most recent episode about autism with Kaelynn Partlow. Join us as we explore autism further with Syd, Atlas, and Sapphire. I’m happy to have them here to share their insights.
Show Highlights:
Meet Syd, a 22-year-old post-grad student who is self-diagnosed as autistic and ADHD:
Thoughts on relationships, unmasking, and “quality over quantity”
Being yourself in a world that isn’t always welcoming to your kind
Cultivating a special (and rare!) interest in learning and education
Meet Atlas, who was self-diagnosed at age 16:
Identifying with autistic characters on a favorite TV show
What it’s like to pick up on other people’s perceptions of your weirdness
Autistic traits that Atlas recognized from childhood about obsessive routines
Meet Sapphire, who was identified as autistic in 5th grade but not diagnosed until age 19:
Nuances around communication, conversations, and awkward silences
The common misunderstandings about what a relationship with an autistic person can be like
Using an “Excel spreadsheet in my brain” to catalog each person
Relationships and the need for “alone time” to decompress
Sapphire’s advice to parents who are hesitant to have their child tested/diagnosed
Resources and Links:
Connect with KC: Website, TikTok, Instagram, and Facebook
Get KC’s book, How to Keep House While Drowning
We love the sponsors that make this show possible! You can always find all the special deals and codes for all our current sponsors on our website: www.strugglecare.com/promo-codes.
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Syd 0:00
Hi. I'm Sid, I'm 22. college grad is post grad. Actually, it's been a year since my graduation and I self diagnosed. I want to say almost exactly maybe two or two and a half years ago. Now,
KC 0:18
what was it that brought you to diagnosing? Oh, it was actually
Atlas 0:21
my partner. When we met, I was identifying as like cisgender. I was identifying as queer, but we kind of met each other just as friends. We were best friends, like six months before we started dating. And like, they would be like, oh, yeah, well, like I kind of do this and that sites and neurodivergent behavior. I was like, Oh, cool. I do that too. And then like, they just kept doing it over and over again. And I was like, oh, obviously, you mean me too. And so it was kind of that like, co realization moment. And that was really cool. Yeah. And I've self diagnosed as autistic in ADHD. And I had a therapist who, like, didn't want to put anything in my chart, because we all know how that can get by. She was like, Yeah, I can see kind of be like emotional patterns and different cycles to kind of confirm that. And that was as official as I needed anything to
KC 1:11
be. Okay. So I feel like there's this stereotype that autistic people don't want relationships or don't need relationships. Do you feel like that's true for you? Oh,
Atlas 1:21
not at all, like not even in the slightest bit. Like I especially recently graduated, like, I would love to be able to have some of the more fulfilling relationships that I feel like we all point back to in our youth in like high school and middle school, like we have those best friends we play with, or hours or hang out with, like, for like a whole weekend. But what I've noticed more as I unmasked is I don't want to be in a friendship or relationship with anyone where I either can, like I have to like almost like halfway show my intent. Like, if I feel really strongly towards someone, I want to celebrate them, and I want to give them gifts, and I want to go to all of their like, if they're performer, I'll go to all their games, all that stuff. But like to them that's like weird, I feel it doesn't feel true to myself to be in those types of friendships. So it's more like quite literally quality over quantity, where I think more autistic people in general are willing to not have friendships where we have to over mask and over compensate for things and feel like we can't just be ourselves or say what we want to say. And so therefore we're around people. So it's almost like switching the cause and the effect around I think, with that stereotype, there's plenty of people I want to connect with, I'd love to but if like, for example, like COVID has made this really real for a lot of people, if someone's not being as safe as I feel like safety should be held, I won't spend my time there. Because it would be like a constant battle, or I would have like over masks that I'm okay when they said they did something that felt dangerous to me. And so it's just, it's kind of like you win some you lose some. And I'd rather lose out on those half hearted friendships and really put my time and energy to people who can share my special interests, you can do parallel play with me, you can deal with some of my like, very funny organizational systems and like really appreciate that. Because then like, for some of the rare times, I feel like I can fully just be I don't feel like I'm pressing the buttons in the background. I don't feel like I'm doing anything else. And so that's really, I think what it comes down to is wanting those quality relationships where you can unmask And just finally, be yourself in a world that doesn't seem very welcoming to that. Now
KC 3:36
that you know that you're autistic. Are there things that you look back on in your childhood, that at the time, you didn't maybe rethink they were about autism. But now you look back and you're like, Oh, that was the autism. And can you can you tell us about it? Yeah, I
Atlas 3:51
think the biggest thing are my special interests. I think that because this is something again, my partner and I have talked about a lot. We both had a strong aptitude for education for like learning and things like that. Like one thing I said, I graduated, I have four degrees, it's a major in three minors. And I didn't do any summer classes. I did like the normal four year track and ended up with all that and everyone's apparently my GPA is really good. Again, I just was kind of just doing what I just do in education. I never even felt like I struggled there'd be interpersonal struggles between teachers and me, or there'd be like kind of a learning curve and then I figured it out but I never like had that experience of like, oh, I had to study so late because I had to understand this thing or like I had to go to office hours over and over again because I didn't get it. And now that kind of like that first chunk of my educational career has come to a close. It's like Oh, my special interest is learning. Like one thing about me to all my friends though is I will make a PowerPoint. It doesn't have to be about anything like official or serious I will just make a PowerPoint I made a my friends were picking a new apartment and I they kind of like took pictures or anything else. Here, here's a PowerPoint like it's 17 slides, like, you have your pick of the litter, basically. And I would like show everything and realizing that that was my, like that learning and school in that process was really interesting to me. It made me understand the world so much better, because I could barely understand what like when people say, I Oh, I didn't like schools like What is there to not like, but it's because my brain just really worked really well with those systems. Like, for example, my biggest special interest, I would say, is marine biology. And I had been interested in it, since I was about, like, six or seven. And I wanted to read like high school level nonfiction books about marine biology, because I had to learn about my sharks, like how else was I going to learn about them? And I had teachers who would push back like, they were like, refusing to let me read it. And I had one amazing teacher who was like, No, you want to read it, read it, if you're not gonna understand it, you're not gonna enjoy it, you're gonna stop. But I understood it and really loved that learning process. And it's something that I went on to do a ton of subway that I'm continuing to do stuff with, even though it's not my like main, like career aspiration, and like, taking the time to like pause and realize that it's like, wow, that explains so much like, I wouldn't be the person I am. If I didn't have that special interest or education. I watched documentaries for fun. I love to read a good old Google Scholar, anything Google Scholar, I will go on there for fun, that's not normal. And so this really taking the time to process that out and seeing how that's informed, like my choices and decisions has made me as a human make a lot more sense to myself, because a lot of people will say like, oh, autism is a superpower, which, like back can give very touchy very quickly. And I like to kind of stay away from that language. But when you don't understand it, it does feel like a mystical thing. True, like it feels almost like magical or otherworldly, because you don't get it. And by looking back in my childhood and being but identify like, Oh, this is a special interest. And the reason I like will choreograph songs like dances to songs while listening to them, is because of autism. It's this the way I STEM is. So I process just makes me feel like a lot of self understanding is really what it's been. I think I would love to be able to communicate this understanding one outside myself, which I feel like I've been able to being an adult and finding other autistic friends. But even outside of that, now that I feel like I have a good grasp on that understanding, I'd love to go further, I'd love to take it to that next level and spread it and share it now. But the huge piece was realizing what was going on.
So I'm Alice, and I first realized, like I started self diagnosing when I was 16. And I realized, because one of my comfort shows is a show called community. And one of the characters I relate to a lot, I didn't know at the time, but it's very autism coded. And I wanted to find more shows with characters like him because I was like, I want more shows with characters I relate to. So I googled shows with characters like Abed, and I got nothing but top 10 autistic characters in TV show list, which gave me maybe I should look into this moment. So I started doing a lot of my own research. And I was coming to the realization that a lot of stuff applied to me. And then I've been to multiple doctors for like an official diagnosis. And just with like being older, and also a fab, I was kind of like having to rip diagnoses from these doctors, because they were very reluctant. I don't even know if the official diagnoses that I got ended up on my actual file, because it was such a hassle. But I can't be bothered to check or like try again, if it's not, you talked about how, you know you do maintain relationships now but because you've been able to like seek out people that you understand that they understand you better. And you made this comment where you said, you know, as a kid in elementary school, like you didn't have as many relationships because other children saw you as like weird or off putting.
KC 9:17
I'm curious, is that something that you can pick up from people like when they're thinking that
Atlas 9:24
I think I'm better at it now that I'm older and I've like, had experience but it was definitely a real struggle growing up as a kid when I was in elementary school for like the first few grades I had a friend group and I didn't realize this until after I had changed schools. But that friend group was not a friend group. I was there to be like the one that they picked on. And even after that I would find friend groups but it was kind of this thing where like when people first meet me they're really interested in me and they think I'm fun and like they think of that'll be weird, but like, I'm entertaining, I'm a good time. And the more they get to know me and the more like, My lack in certain areas shows, the less interested people are in sticking around long term.
KC 10:15
What does that like?
Atlas 10:17
I mean, it's not great. It sucks to have people that you have a good time with. And then once they get to know you better, they're like, Oh, actually, you're too weird for me to keep hanging out with, I often kind of felt like, in school, I was like, it was like, all the different friend groups were playing like hot potato, or I just kind of being passed around from group to group and like, I'd always find a new group. But how long was I going to stick around?
KC 10:43
So my last question is really about like thinking back to your childhood. Were there things that you now recognize that were autistic traits, or like that were things that come from your autism? What kind of thing,
Atlas 10:56
one of the ones that I always it's like, I don't have like a flood and party story. I used to use a separate utensil for every food item. So if I had a plate of food, and I had three things on the plate that needed a fork, I needed three forms. Because I couldn't have the food from one fork touching the other food. I was a nightmare at restaurants because my parents would have to ask for, you know, a million utensils. And I definitely had like a lot of quote unquote temper tantrums as a kid that were definitely not temper tantrums, they were belt downs, but I no one realized, again, with my like, I need to keep with my routines. One time we went up to cottage for like a fun weekend at the beach. But it interrupted my morning routine as a kid of getting up and drinking warm milk while watching Dora the Explorer. So I just flat out refused to do anything they made. My mom made me my milk, I refuse to drink it because I couldn't drink it in my house in my chair with my show. And then because I hadn't had my morning routine, I couldn't do anything else I wouldn't eat, I wouldn't do anything. I was just sitting there and being miserable. And I got to the point where I hadn't eaten all day, they took me to a doctor, and he was like, kid you gonna fucking eat me to eat eventually is one of the doctors was like, if you don't eat at some point, within the next hour, I'm gonna have to like force feed you. And I was like, Okay. And I sat there and I ate whatever it was they gave me. Wow. But yeah, I was like, I either needed that thing to happen in my routine. Or I needed to like a threat to break that. Yeah.
KC 12:46
And it wasn't that same experience of like this one thing can't happen. Like now everything is off. Everything is wrong.
Atlas 12:54
Yeah, like nothing else could happen until I had done that first step. And if I tried to keep going, I'm sure I would have. It was distressing to try and do things without having done that first piece of my routine.
KC 13:08
Yeah. And so did your parents ever suspect that you were autistic? Or is that you mentioned that you kind of came to that conclusion yourself when you were 16? Yeah,
Atlas 13:17
no, they never had that. I do think now that I'm older. I definitely think I get it from my dad. So I think he didn't notice because I'm like him. And my I don't know if my mom didn't notice or she ignored it. Because now that I'm older and I can look into these things myself, I again, I definitely think this has also impacted my diagnostic issues is that one doctor who like oh, you're funny. He also at one point, asked my mom's opinion. And she said she thought I was fine. Which I mean, maybe she does. But I do think at least part of it is kind of that thing of like, parents have an idea of how their kids are or who their kids are. And I think like to her in my I feel like she doesn't like admitting that I'm disabled. Yeah,
KC 14:12
I've come across that with a lot of parents where they're hesitant to seek out a diagnosis, or they have this like, oh, well, it's just, you know, they're just like all the other kids like, that's normal. That's normal kid behavior. That's normal kid behavior. Or that just a little odd, you know, and, and they, even if they sort of notice, hey, that seems different than other children. They're really they feel almost afraid of their being a diagnosis. And for that reason, they don't seek one out. They don't get one. I'm curious, like if you could talk to parents that are starting to notice things in their children, and they're feeling that fear and apprehension. I wonder if you have any insight or that you could offer them about what you think a diagnosis would or would not have done for you. Yeah,
Atlas 14:55
I definitely think having a diagnosis would have made my life easier. Uh, I think I couldn't articulate why I was having the problems I was having as a kid, I can articulate them now because I understand what's going on. But when I was like, at the cottage when my routine was interrupted, I couldn't, I didn't know that that's what the problem was, I was just upset. And I think if, as a parent, as someone with more experience, you could see your child's like having a meltdown and be like, Oh, we didn't do that step in the routine, or this is off, it would have solved or not solved. But like, in that moment, you know, if my parents had looked at me and been like, Oh, my God, we didn't do the regular routine, or find a way to adapt the routine. So we can do it at this cottage, I think they wouldn't have had to have like a full day of me melting down because they would have been able to solve the problem.
KC 16:00
So when the DSM talks about the difficulties and social communication, they give some examples, and one of the examples is trouble with the back and forth flow of conversation, and difficulty making and maintaining friendships. I'm curious about that trouble with the back and forth flow, like, is that something that you resonate with? Or that that you would you identify
Sapphire 16:22
with? Oh, definitely, I, as I've gotten older, I've been able to learn more, but I have a hard time knowing when it's my time to talk. But also, I stayed thing that I think fit perfectly into what we're talking about. And then sometimes the other person will look at me, like I just said something completely crazy. And I'm like, oh, no, I misunderstood something, or, like, I didn't get the vibes. And like, now, there's awkward silence. So I don't know what to do with awkward silence. And sometimes I just don't talk when when I'm like having conversation, I personally, I prefer to listen. Because the longer I listen longer, I can get the vibe for the conversation that we're having. But if I don't have to talk, I really don't want to,
KC 17:05
and is and when you say we, if I don't have to talk I don't want to, is that because of that experience of not really being able to, quote unquote, like, read the room and know what to do. Or if is it just, you know, I just find listening more enjoyable than talking like, I don't necessarily need to talk to someone to feel connected to them. It's a bit of both.
Sapphire 17:25
I don't talk when I was a kid, I was, um, select their speaking health, my family members would say that I was shy that I didn't talk. But that's not it, I just, I had nothing to say. And I have nothing to say, I'm not gonna come up with something to say. And also, if I do have something to say, I'm too anxious about where it might fit in the conversation. I just won't.
KC 17:45
It's funny when I hear you talk. And I think about myself, I feel almost like the exact opposite. Like, if I have a thought that's not shared with someone, I feel extremely lonely. There's like, it almost like creates a shared reality for me to say that thought or that feeling outside. Like for someone to witness that,
Sapphire 18:04
you know, my wife is very similar. They like they connect with people through talking, which is why they share like all the things that they info up about with me it feels like we're connecting in this moment with the thing is with my head, which is really cool.
KC 18:25
So I think there's the stereotype that autistic people don't want relationships, or they don't need them. What is your reaction to that?
Sapphire 18:33
I think that comes from a neurotypical misunderstanding of what relationship with an autistic person can be like, like, the way we show love and affection can be totally different than the way and a sick person could show love and affection. I think a lot of autistic people are just lost and with social interaction, when you when the person doesn't understand you, or when you don't see in them. It's a lot of the way I see my brain is like a supercomputer. And I don't like being compared to computers from people who are autistic. But for me, it's true. I've cataloged everything. I love Excel spreadsheets. So when I meet any person, they automatically getting a new Excel spreadsheet in my head, and all the things about that, and the things that they like, don't like all their favorites, the way that they choose. Like, it's exhausting to learn to one. And it's exhausting when that person doesn't know you. And so, and we I just know a lot of autistic people have had a hard time with friendships and relationships since they were a kid. So you also get the it's hard to make friends. It's hard to have relationships, so I'm going to not try. I think it's what it is. It's not that we don't want it. It's just that it's incredibly difficult and the way that society is structured right now, when it comes
KC 19:43
to relationships, do you enjoy having relationships?
Sapphire 19:49
I do. There's always a bit of a learning curve low because like no matter if the other person is autistic or listing. Autistic people are very different as well. And so if there's another autistic person who also enjoys quiet and alone time Vive, we've I've immediately, but my wife is not like that they are the type of autistic person that needs to like, info dump all the time, they watch video essays, and then they pause it so they can talk to me about it. And like, I decompress by myself. That's how I call my bogging. And it's not the same for everybody else. I enjoy relationships with people, I also just need private and to meet. I don't know what that is. But I like to, I need to like go inward to calm down.
KC 20:34
So if you had to describe like, let's say that a friend was coming over for two hours, what would be like, your dream way of spending two hours with a good friend?
Sapphire 20:46
That's a hard question. Because I've wanted to ask you like a bunch of questions like what typical? What's the budget? Like? Where are we hanging out? Adam?
KC 20:54
Let's say that a friend is coming over to your house. And so you're going to do something over at your house? Oh,
Sapphire 21:00
dream two hours, probably watching TV. I'm really into parallel play, we would watch the same movie, I would be playing Candy Crush at the same time. And we would pause it make commentary. Have some snacks, you know, maybe that's it. And how old were you when you were diagnosed? So technically, I wasn't because I got evaluated as a child. And my parents were like, No. And then I have an OT for a little bit. And then I remember seeing the paperwork on my mom's side of the bed. And she just decided not to fill it out. He was like, No, you don't need it. And I didn't know that I was being evaluated. And it wasn't until I was 19. Sorry, can I tell this story real quick. When I was 19, I was working at Barnes and Noble. And we had like, a teacher discount at Barnes and Noble. And I was talking to someone a customer and she said she was a teacher. I told her about it. She told me she was no tea. I was like, Oh, I had no tea when I was a kid. And she was like, if you don't mind me asking, like, why did you need to know tea was like, Oh, I have dysgraphia. And she was like, No way. She told me that dysgraphia is actually part of something called Ireland syndrome. And I own syndrome affects like 50% of autistic adults. And I should probably take this test and I took it and it was like, Hey, you might have autism. I called one of my moms. I was like, Hey, I think I'm autistic. And she's like, Yeah, what do you mean? Yeah. And she's like doing we're like, we thought you were in it. We got an elementary school, we took you like three different places. But like, we just decided, like, you were good and social interactions one on one. But like it was when we were with your peer group that you had a hard ride. And I was like, so that just just disqualify me from being autistic. Because I was good one on one shouldn't have been a bigger qualifier. I didn't talk, I had a hard time chewing food. And there were so many things. And so I would say it technically fifth grade, but truly like 19 year old, which is just so ridiculous. So
KC 22:59
you were identified in the fifth grade, but you didn't really get like a diagnosis in your chart until later. Interesting. What would you say to parents who are maybe seeing or they're told by people like, Hey, we're seeing some signs that your child might be autistic and a parent that feels apprehensive. In moving forward and getting that diagnosis,
Sapphire 23:22
I understand the way it can make a parent feel like the first thought is, I don't want there to be something wrong with my kid. But I don't think that being autistic means that there's anything wrong with your kid, it just means that your kid's brain is wired a little bit differently. And that's okay, I know that it can be scary about what that diagnosis can mean for them for the rest of their life. But getting the diagnosis in the long run, ended up having a better quality of life for their kid because I know a lot of autistic adults who asked children thought that there was something wrong with them. And it just turned out that a lot of the deficits that we're having were autism, and that they were solutions to it. And your kid is going to be amazing regardless, and getting them the help that they need is not to a detriment. I know my parents were worried about that, too. They didn't want there to be like, there's something wrong with me. But it can only be a good thing for your child to know more things about themselves and get the resources that they need to properly and have a thriving life. You know, your child can thrive if they're autistic. And if they could not just a diagnosis, that means that they can thrive. Did you feel that
KC 24:31
growing up like there was something wrong with you? Oh, I don't think I was software when
Sapphire 24:37
there was probably something wrong with me. It wasn't until end of middle school high school where I was really smart. What Not to toot my own horn. I'm really smart. But I was having a hard time. I was having a hard time and I couldn't figure out why I just like thought I have another routine. I also have ADHD. So I was thinking like if I have another routine, I'll just stick to it. This this time. I'll stick to it. I promise and everything will be great. And I couldn't figure out why my parents were frustrated, because they were like, you're really smart. But I cannot tell that. And I couldn't figure out why I said things that were wrong, and why people didn't like being around me, I think I'm pretty cool. I know, I'm pretty cool. But I just, I couldn't figure out what it was about me. And that made people like, want to be around me, but not closely. You know,
KC 25:29
it's interesting, because, you know, you mentioned that you think some parents are worried that if they give their kids a bunch of services, that that might make the kid feel like there's something wrong with them, or like, you know, tip them off to like, Oh, I'm not normal, or whatever. And, you know, the more that I talk to autistic people, the more I hear kind of what you said, which is this thing of, you know, well, but I already knew that there was something different, like, I grew up thinking there was something different. And because I didn't know what it was, a lot of people say, like, I had nothing else to assume, because except maybe I was just wrong, or, or not good enough, or just bad or broken in some way, you know, versus, you know, having the information of like, Oh, it's this diagnosis, which means that my brain just works differently. And that's going to bring up some difficulties and interacting with the world because the world isn't made for my brain. And so I think it's interesting that you bring that up, because I do think that that's something that parents need to hear is that you're not going to, and, you know, I totally resonate as a parent with I want, I don't want my child to feel like they're not good enough. And so I think it's interesting to hear like, there are I don't want my child to feel different. It's like your child is going to know they're different.
Sapphire 26:47
The Autism is there, whether or not you have it in writing or not, your child is autistic. And so I think it would be in mice in my brain, it makes a little bit more sense to have that answer and then have all the tools other than just like sending them out into the world and not giving them the resources because they're about being autistic is traumatic, especially when you don't know and so the all that trauma in their body cannot be good in the long run. And if they find out that they're autistic, when they're older, it's like, okay, well now I have to deal with all of that baggage from my childhood plus now trying to function as an adult, you know, and there aren't that many. There is any services for autistic adult