Cynthia - Transcript
This is a transcript of a “Terrible, Thanks for Asking” episode entitled, “Cynthia.” The text may not be in its final form and may be updated or revised in the future for accuracy.
Listen to the episode here.
I’m Nora McInerny, and this is “Terrible, Thanks for Asking.”
When we’ve talked about autism on this show before, we’ve talked to the parents of autistic children because parents are… honestly, much easier to contact than children. With good reason! Also, parents listen to our show, not children, With the exception of Gus. Gus, you know who you are. It’s Phyllis Fletcher’s son. Love that Gus listens. Hello, Gus. We love your mom.
But we’ve from a lot of you, from a lot of our listeners, asking us to speak to an autistic adult and let them tell their own story. What a great recommendation! So that’s what we’re doing today. Because yes, autistic kids grow up to be autistic adults, and all the stats in the world can’t tell you about what that experience is like.
But Cynthia can. And you’re about to meet Cynthia.
Cynthia’s sister Maggie is a “Terrible, Thanks for Asking” listener, and Maggie sent us a message after our “Come Meet Drayden” episode (which is such a good episode, if you haven't heard it yet) and the message basically said, “My sister is autistic, you should talk to her.” And I thought sure, yeah, let’s do it.
So we all got on an internet call together. What you’re going to hear is the lived experience of a Latina woman with autism. It’s her experience alone, which is just her experience. You may sometimes hear her sister Maggie’s voice, but otherwise, it’s just Cynthia.
A quick note to say that we make this show, most often, with regular people, recording in their homes, which means that the audio quality isn’t always what we had when we were in studios, and we know it, and we’re doing our best! Which I know you know, but let’s just say it out loud.
So, here we go!
Nora: OK. So, Cynthia, tell me, where did you grow up?
Cynthia: I grew up in Garden Grove, California.
Nora: What was the best thing about growing up there?
Cynthia: Playing with my friends. All the friends that I had and going to the pool. I don't know just like we would just play all the time. Just play, and play, and play all day, every day.
Nora: God, I miss being a child.
Cynthia: Yeah. The kids are now, we don't do that. We never like, were on our phones or iPods. None of that. We were like, play outside all the time.
Nora: Yeah. What did, what kind of games did you guys play outside?
Cynthia: Jump roping. We would play tag. Hide and seek. We'd go swimming in the pool. Do racing. Run a lot. Be on scooters. Use our Heely shoes. Remember those Heely shoes?
Maggie: Yeah,I do. [laughs]
Nora: Oh, God. You had wheelies. I wasn't allowed.
Cynthia: Yeah. Heelys. My dad bought us the Heelys. We played dolls. We would do sleepovers. I mean, the kids nowadays like it's like, wow, that's crazy.
Nora: I know. They're just like staring at rectangles in their hands. It just makes me want to scream.
Cynthia: Yeah, it's pretty sad. And I'm like dang.
Cynthia is the baby of her family. She grew up near her cousins, and they were all really close. They played together. They had sleepovers.
Nora: How did you feel about school when you were little — like, elementary school?
Cynthia: Well it was fine. I mean, it was like... just the days were like, I was so little so I don't like... in elementary school when I was little. How was it? It was like fine I guess. It was fine. It was always good, but I'd always like, I don't know, like when I was little I was always like, I wasn't a good kid. So I was like…
Maggie: Did you say I was or wasn't? [laughs]
Cynthia: I was not a good kid.
Nora: What do you mean?
Cynthia: Like I was a kind of a bully. [Maggie laughs.] And then —
Cynthia: Like I don't know. But just like always, like I always, always had friends and I don't know. It's weird how things turned out. [Maggie: Would you hit them?] I wouldn't hit people, but I'd always like, be friends with the people that were the bullies. They kind of, I guess, like the kids, you know.
Nora: Yeah. I think that's... I think that's kind of a survival skill in some ways.
Maggie: I think every kid goes through that.
Cynthia: And it went like that a lot through elementary school and junior high and high school, so pretty much all through school.
Nora: Growing up, what did you know about autism?
Cynthia: Growing up, I really, like... I was too little to know. But it was weird that everyone was kind of, like, normal — not normal, but like was like, you know, nobody like, was doing, like the habits that I was doing. So like all the kids weren't jumping up and down and doing their hands, like, to their, to their chin or like touching their face or rocking back and forth. So that's why I thought it was like, I was a little different than other people. Than the other kids.
Maggie: For example, she had this habit where she would put her hands together, squeeze them, and then she would like put her hands together on her chin, like pushing them towards her chin. And we started noticing and actually her school pictures, that it starting to take a toll. We started seeing her chin, like, kind of get crooked because she was doing it so much and like she would ask, you know, like. “Yeah. You know, my hands hurts, my chin hurts.” And like, what am I supposed to say? We would just be like, try to stop doing it.
Cynthia: My mom told me I ran away once. That I opened the window in my room and like, ran off and wasn't home. So my mom was like, “Oh my God. Like, what am I going to do? Do I have to call the cops? Because she can't be found.” So then my mom was like crazy, crazy looking for me.
Maggie: Do you remember that?
Cynthia: No. That's the thing, I don't — things like that I don't remember. But then my mom found me walking with an old woman. Right, Maggie?
Cynthia: She found me walking back home with an old woman. And the old woman was like, “Hey is this your daughter? She's been walking around the street.” That's when my mom was like, “Oh, my God. We have to have Cynthia like home, at home all the time.”
Maggie: How old were you when you found out you're autistic, Cynthia?
Cynthia: I was around like 12 when I found out, because I saw another kid doing the same habits. But he was rocking back and forth. And I asked my mom, so I was like, “Oh he has something.” I'm like, that's the same thing that I do. So I was like, “Oh, he has autism, doesn't he?” So my mom, like, had to tell me that I had autism. That's when I like, I was about 11 or 12 when I really, like, knew that I had autism.
Nora: How did you feel when you heard that? What did it mean to you?
Cynthia: Well, I don't know. I just felt like oh, autism. Oh. I mean, it's like any other it's… I was like, oh, wow like, that's shocking. But I already knew that I kind of like, was, had something other than other people didn't. I was like, oh wow. That's crazy. Finding out that I have autism. But I was like, wow, that's crazy. Like crazy. I was just shocked and surprised. It's all just shock. I felt shocked.
Nora: Maggie, what did you think when you heard that?
Maggie: I remember we were at Hometown Buffet.
Cynthia: Oh yeah, I remember that too. That's the time I found out.
Maggie: Yeah. So she did notice someone do the same, like, just, well, you know, like flapping their hands like that. She noticed that. And she brought it attention to me and my mom. And I remember, like, I stopped eating. I didn't know what to like... I was in shock. Cause she pretty much caught it on her own. You know, like we didn't even have to tell her, like, she figured it out. And I just kind of made eye contact at my mom, and I was like, “It's time, you gotta say something.”
And she told her, “Yeah that's… he does the same things as you. Yeah. You know, you’re special.” And she kind of was just like why? She kept asking. And we're like, “You know, you're just, you're special.” But I was like, in my mind, I was like, oh, my God. I feel like now that she knows, I felt a little relief actually, because I always had to tell my friends, like, hey, you know, my sister, she's on the spectrum and just don't tell her. She doesn't know. But now I definitely had a sign of relief.
Nora: Tell me about that relief?
Maggie: Like she knows. Like, I kind of don't need to hide anything from her anymore.
We’ll be right back.
We’re back. And we’re talking with Cynthia. Cynthia found out about her autism when she was 12 years old, but she was diagnosed when she was a toddler.
Cynthia: My mom, my dad, thought I was deaf because I wouldn't socialize with anyone. I was always by myself. So my mom and my dad took me to a doctor named Dr. Lot. And then that was when he diagnosed that I was autistic. So I was diagnosed at 3 years old. So around that time and that was when my mom took me to the Hispanic group, at 3 years old.
The group was a big part of Cynthia’s life growing up. It was a support group for Latino kids with autism and their parents. And she loved it. She loved it, even though she didn’t even know she was autistic. She loved it so much, she even volunteers there now as an adult.
Cynthia: I had a lot of ABA therapy when I was little. So like, I had applied behavioral analysis.
Nora: What does that mean?
Cynthia: I think it means like, to… it's hard explaining it, because I had it when I was little, but trying to, like, teach the autism person, the autism children or adults to, like, be independent and try to like, know how to do things on their own and teach them. Like for example, when I was little, they taught me how to make the bed, and like taught me how to count numbers. Figurative language, like figurative speech, or taught about the 50 states in the U.S. But I forgot now, but I was like, wow, that was so long ago. [Maggie laughs.] Or like trying to like, know how to tie my shoes or… or like, grooming, Maggie? They taught me that?
Maggie: They taught you how to brush your teeth.
Cynthia: Oh, how to brush my teeth, like, brush my hair. Because my mom was like, oh my gosh, how do I handle this little jumpy, hyper person? [Maggie and Cynthia laugh.] So, like, they taught me, like, things that will help me, like, learn how to be independent, like live on my own. I think that's what it is. And when I have, like, tantrums, bad tantrums, in general, like, they tried to, like, calm me down, like, if you really have a tantrum and you're like throwing things and you're throwing yourself on the floor, like the therapist will, like, go on you and just like be on you until you can breathe again and calm down. And that's what I think it is. I think that's what it is.
A note here that many people experience ABA very differently than Cynthia. Some people experience it as abusive or as a form of conversion therapy, forcing the autistic person to comply with neurotypical behaviors. But Cynthia had a good experience with it, and she found it helpful.
Nora: Cynthia, when did your parents get divorced?
Cynthia: I remember that day, very day that they got divorced, too. Like, it was around the end of May. It was a really hard, hard night for me. It was hard. [Maggie: Tell her.] I was like, it's still like, oh my god.
Maggie: Just say a couple stuff you remember from that.
Cynthia: I remember everything from that night. Like everything. Everything. They separated because my dad cheated on my mom. I don't know, like my dad was not a good husband, but he was always a good father. Like before, when they were together, he would always like get to the house really… not really sober. [Cynthia and Maggie chuckle.] I'm sorry. [Maggie: It's okay.] It’s hard to talk about it.
Maggie: So he wasn't sober?
Cynthia: No, he was clearly not sober. Sorry.
Maggie: Yeah, keep going.
Cynthia: And then my dad was just, like, saying like out loud, like, oh my God, this and that. I don't know, saying a bunch of stuff. Arguing with my mom. And then my mom was like, arguing — like, was she arguing back? I don't remember, but I know he was. And maybe she was too. And I just had enough of them arguing. So I ran downstairs, went downstairs and like I saw my dad drinking a gallon of milk. My mom was sitting there just crying, and then Maggie was with her. And then my dad was apologizing to my mom like, I'm sorry. Give me another chance. I'm so sorry. My mom just had enough and said no. Like, she like, no I can't. She's like, no. And then I was like, “Why not, mom? Give him one more chance.” And then my mom was like, no, no, no... Oh, it affected me so much.
I know I was mad at my mom for leaving my dad, like, oh, my God, I have to change schools now. I can't. I wanted to go to another school, but now I have to go to this one that I don't want to go. I know that the people are going to be mean to me and like, I don’t know these people. I don't know what to do. I don't want to go to this school. I hate going to this school. I don't want to, like, I don't want to move. Like, I like where I live now. I'm like, I don't want to move away from here.
Cynthia and Maggie found out they have a little brother from their dad’s other relationship. Cynthia went to stay with their aunt, and Maggie and their mom moved into a new place.
Nora: That sounds like a lot of changes.
Cynthia: Yeah. So I was like, kind of scared, like, oh my God, what's going to happen now? Like, what's going to happen? That's why I was like, always asking what's going to happen.
That’s life at home. And life at school — which is middle school at this point — is also really hard.
Cynthia: So I was in class and we were all sitting down. The teacher was lecturing us and I was wearing a pink shirt. And this person told me I had a bug in my shirt. So then I was like, oh, crap, really? She's like, yeah. Check your shirt. You know, when I checked my shirt and I had a bug in my shirt, and I got up quickly and I was like, oh, my god this can't be happening. So I like literally got up really fast and ran to the restroom and everybody was laughing hysterically at me. And I went to the bathroom and I was so embarrassed. Yeah. And then I went back to the classroom and I told the teacher I was like, oh, I'm sorry, I had to use the restroom. And everything is like, it's fine, you know, like that sucks what happened to you, you know, I was like, yeah, it does. I don't know, just a lot of things like that were not cool happened to me. That was embarrassing. I still remember that. I’m really like, somehow that bug ended up in my shirt. I was like, oh, my God, this is so embarrassing. [Maggie: Inside?] It was like inside my shirt.
Cynthia: It was like, like right here.
Maggie: Oh, like by your bra.
Cynthia: By my bra. Like inside my shirt. I don't know how it ended up there. I was like, what the heck? Why did it end up in that place?
That’s middle school, but Cynthia eventually has to go to high school. And she has really high expectations for herself.
Cynthia: I made myself a promise like, to be a nice student. Like, to always listen to the teachers. And to not get in trouble. But like when I got into fifth grade, all the way to high school, I was really bullied. And I was like, always like lost. I knew that if I made friends with anyone, I knew that those friends would then hang out with them. So I was like, why am I going to be friends with any of these people?
Nora: What would people do or say to you, that was, that made you feel like you were being bullied?
Cynthia: Well, people would talk about my weight, like how I was like a big person or that I was big. Sometimes like, I don't know, one person called me Mike Tyson in high school. So I was like oh my gosh. I felt really like wow, I felt bad afterwards, but you know. I don’t know. You know, I had to like OK, he said that. So what? You know, it happened he said it, you know?
One time in high school I was opening my locker. And like someone pulled my bra, like, yanked it, almost like pulled it and like and ran off. Yeah. And then the next day, like one of the people was like, oh yeah trying to explain like why, why that happened. And then I told them, don't do that again cause then you'll get in trouble for it. You all you people will get in trouble, or if that person that pulls my bra will get in trouble. I was so mad. I was like, oh, my God. I was furious after that. And I told them I was like, don't do that again.
We’re gonna take another quick break.
We’re back, and Cynthia has told us what growing up with autism is like… but she’s a grown-up now. She lives with her mom, with Maggie, and her dog. And this is what her days are like now.
Cynthia: I walk my dog. I write in my journal. I try to write but not a lot. Sometimes when I get bored, I paint some things. I clean my room sometimes. I make my bed. I get ready. I change. Sometimes I cook my own food.
Nora: You work out.
Cynthia: Yeah, I work out. Sometimes when I'm not tired I'm just like I go workout. Go on a walk. I go to the gym, but when I can. But now with the virus I don't know, I haven't gone to the gym, so I usually just go on walks.
Nora: What do you like to cook?
Cynthia: I like to cook like, I don't know, like sometimes I cook with Maggie, we cook, like healthy food sometimes. Like one time I cooked with her potatoes, like sauteed potatoes with like salt and pepper or —
Maggie: You like huevos —
Cynthia: Or like sometimes with bacon or eggs with jamon. Huevos con chorizo. Not really. Or frijoles con chorizo.
Some things ARE different than they were for her growing up, and some things just aren’t.
Nora: Cynthia, how do you think autism has affected you as an adult?
Cynthia: Well a lot. Because when I go to the doctor, like, they're usually like, oh, you're an adult now, so your parents can't be here with you. Like your dad and your mom, because we have to ask you really personal questions. And now you're an adult. And also you have to talk with the doctor not with your mom or your dad. And it's by law. So if you have a lawyer, you know that, you know, who knows if they can be with you or not. Like so your parents can't be here unless you have like I don't know, like something like to... for your parents to be around with the doctor. Or like, when I'm at school they're like, oh, you want your parents to be here with you when we talk or not? Like they try to, like, confuse their educational talks so that they'd be like oh do you want your parents here or not. It's like, I don't know. That's what like, since I was a minor they would never ask me or do those things, but like since I became an adult like, I don't even know who my physical doctor, is to be honest, I don't even know who she is or who he is because I keep changing doctors.
Nora: Is it easy to make friends?
Cynthia: Well, ever since, like I’ve had, like not good friends, because they like sometimes better things to do. Like we're like, oh, I got to go now or whatever. Like, I was just like... trusting people is really hard for me because, like, also in the past, I didn't really have good friends. And it’s just like… I don’t know. I just like... it's hard for me to trust people. So it's really hard for me like to make friends and socialize with people.
Nora: What is a good friendship?
Cynthia: A good friendship is someone you can trust, someone that cares, someone that doesn't do like, shady things, just like tell you something that's not true, like doesn't like always like get you in trouble like just cares about you and just trust you and you trust that person and you like... when you talk to that person like that person won’t tell anything, won’t say anything unless it’s like, you know, like life or death or like… that's what a true friend is for me.
Nora: What do people do that makes you not trust them?
Cynthia: Like lies, gets me in trouble. Like always, like... say something that's not true. Like doesn't like talk to you. Doesn't answer your phone calls. Always ignores you like you don't exist.
There are a few specific situations in her adulthood that have made Cynthia wary of people — that have challenged or even destroyed her ability to trust.
Cynthia: I was like, in the living room or something downstairs, and my computer started making beeping noises. It just, really loud beeping noises. So I went upstairs to my room. I was like oh my God, what is going on. So then I checked on the computer and it was like beeping and couldn't stop. So then I was like oh, my God. How do I stop the beeping from making so much noise?
So I was like oh maybe this number will help me stop the beeping. Right? So then I call the number and I was like, oh my God, like, my computer's making beeping noises. And then the people that answer were like, oh, well how can we help? And I was like, well, can you stop the beeping from making noises? And then they're all like, well, the only way we can stop it from doing that is if we like, fix your computer, fix everyone else's computer, and not only your computer but the whole house. And for a cost that'll be worth it. They said I would have like, good Wi-Fi, and this and that, like really good things on the computers and Wi-Fi in the house. So I didn’t ask how much it was, but they were like, it's this much, you know, just pay this and then we won't be bothering you, you’ll have really good service. And so they're like, oh like what's the log-in… did they ask for the log-in to my computer?
Maggie: I don’t know, Cynthia. I didn’t talk to them. But they were pretty much trying to sell her like an antivirus —
Cynthia: They were lik, trying to sell, like really good like antivirus on the computer. Like trying their best to, like, really sell that to me. I was like ohhh and like I was all interested. Like, ohhhh, I will like, call my mom, my dad. We have really good service, blah blah blah.
Maggie: So what ended up happening?
Cynthia: So what ended up happening was they asked for my credit card, which was, well, so then I was like okay, like I'm saving my family for the good Wi-Fi and stuff so I gave them the number of the credit card and they're like "oh, okay." And then… and then they’re like, okay, we'll have this sign for you. So like a lot of like, to sign in came up on the computer. So then they signed my name on it, on the, on the computer. And they were like, oh, thank you very much. And like, I don't know, just like, seemed weird. So I told my mom, “Mom, like, you guys are gonna have good Wi-Fi and everything. I helped you guys.”
And my mom was like "que hiciste?" She's like, what did you do? And then my mom said oh heck no. So she went to like, she called my dad, and my dad like, okay. My dad had to come over to the house. He’s like, oh what's the number? I'm going to call him right now. Give us back the money that they stole from us. That they stole. So my dad called the number. “Hey, like, why are you doing that?”
After that happened, like I literally, like, threw the computer on the floor. I was like, crying, I was like I'm never going to have a credit card ever again, like I'm never going to do this again. Like never, I'm never going to go to the bank and get a credit card. That's how scared I was. Like, I'm still scared to even have a credit card. That's how scared I am. Like that was like, oh my gosh. Like, this is not fair. Like, why were they, like, do this, you know?
Nora: Yeah. I mean, I can understand why it would be hard for you to trust someone.
Cynthia: Yeah. Because like, no one has to go through that.
Maggie: At school too, right? With the whales?
Cynthia: Yeah. When I was… wait what do you mean with the whales?
Maggie: You were at school and then they're like “save the whales” or something like that.
Cynthia: Oh yeah. And I was at school and like, I was walking, going home. And some people were like, “Oh, can you help us save the animals and like save the whales, like save animals?” They were trying so freaking hard so that I can like, give you money so they could save animals and like all the plastic and stuff and animals, and the animals? Right?
Maggie: Yeah. And the only reason I caught it, because obviously we had a joint account, and I kept seeing a withdrawal of like 13 dollars, and I was like what is going on right now. So I ended up calling, and I found out what it was and I was like, oh, so...
Cynthia: They try, like people just try so hard to get money from you and like, they like, try to convince you to, like, pay for their cause. But all that it is is just there just to you like your money.
Maggie: We saved some whales. It's OK.
Cynthia: Yeah. But still, like, people are just so manipulative and like, there's people that are like really malicious people and they just want to like, they just want it for their own, that might be their job to like get money. You know, that probably is their job. They're just like trying to, like, convince you that it's not, or like that they want to save their cause or something. Right?
Nora: Yeah. I can see why that would be — that would make me really, really nervous.
Cynthia’s autism looks different than it did when she was a little kid. She doesn’t do that thing where she puts her hands up against her chin and pushes and pushes until her chin and her hands ache.
Cynthia: But I have other bad habits that is like hard, still hard to not do..
Nora: What are some of those habits?
Cynthia: I think my one habit is standing, like, when I listen to music, I just get really excited. Or when I get excited about watching a show or anything that’s really emotional, I start jumping or I put my hands over my face. I really, really like, I plaster it on my face really hard. Or when I stand up I just, you know, rock back and forth. It's really bad.
Nora: Why is it bad?
Cynthia: Because I do it a lot, and it's hard to not do it. To stop.
Nora: Does it feel good to do it or bad to do it?
Cynthia: It feels, like, really like oh my god, it feels nice. It feels good doing it like, relief, like that I did it afterwards.
Nora: Yeah. So why is it bad?
Cynthia: It's bad because I know that my parents are like, oh, don't do it anymore. Like, stop. That's why your back hurts. That's why your hands hurt. Because you always do that. Stop doing it. You can't do it anymore. You got to stop. I'm like, oh my... I know. But it's so hard to stop.
Nora: If you don't do it, what does your body feel like?
Cynthia: If I don't do it, my body feels like it hasn't had like, enough of that. Like it hasn't… it needs it. That it needs like, for me to do that.
Movement and music are a big part of Cynthia’s life.
Cynthia: Rock music. [Maggie: EDM.] It just makes me, like, pump up. Like when I'm working out, it makes me want to, like, work out.
Nora: Oh yeah. I think that there's like, science behind that, too. Like you're supposed to listen to like a certain speed of music, and it makes you want to work out. I don't listen to that kind of music. I listen to sad music.
Cynthia: I listen to sad music, too. Like, really.
Nora: Yeah. What's your favorite sad music?
Cynthia: I don't know. A lot of music that I listen to that is really sad.
Maggie: She does listen to a lot of sad music.
Nora: I think for this episode we might need you to make us a Spotify playlist to go with it.
Cynthia: Oh my god. Come on. You serious?
Nora: Yes, I'm serious.
Cynthia: Oh, wow. My music is not, not really happy.
Nora: That's fine. Neither am I! That's OK.
Maggie: That's all Nora listens to, too. That's all she listens to is sad music.
Cynthia: Yeah. OK.
Nora: What do you think that people don't understand about people with autism?
Cynthia: They just don't get it. I don't know. Oh, it's really hard to explain these like... how it feels, but they don't like...
Maggie: What do you wish they understood?
Cynthia: Like other people like would just understand those that are like more vulnerable and like are more shy and can't really socialize instead of judging. And like saying oh, like, this person is too shy or too quiet. Like, oh my God, let’s like, judge and not talk to her. They don't, like, really judge, but they're just like, let's not like... just pretend that she does not exist. So I feel like people should understand more like how it feels to… that those are that are on the outside.
Maggie: Like, not judge.
Cynthia: That like really understand how like… why those that are can't socialize or like —
Nora: Do you sometimes feel like you're on the outside?
Cynthia: Oh all the time. Like, when I'm like somewhere and I'm like, oh my gosh. Like people are like more with their friends and stuff. And I'm just like, well, you know, I just feel like it's... I'm like, on the outside looking in. So that's how it feels all the time.
This has been “Terrible, Thanks for Asking.”
I’m Nora McInerny.
Our production team is Marcel Malekebu, Phyllis Fletcher, Hannah Meacock Ross, Jordan Turgeon, and Jeyca Maldonado-Medina. Our theme music is by Geoffrey Lamar Wilson. We’re a production of American Public Media. And this was recorded in my closet, which is where we record things. We’re just little closet dwellers recording a podcast.