Anita Rao 0:00
Hey, it’s Anita. We’re revisiting one of our favorite episodes from 2023, about getting an autism diagnosis as an adult. We explore why it’s harder for folks assigned female at birth to get these diagnoses — and how learning a name for something you’ve experienced your whole life changes your relationship with yourself. We hope you enjoy listening back.
There was nothing easy about 2020. You don't need me to remind you that every system, structure, and norm we relied on was disrupted almost overnight. I'm someone who thrives on routine and carefully crafted plans, so that era was very uncomfortable. But I moved through it with a lot of privilege. My job was steady and could be done remotely, I had no kids to care for, and I had the support of a therapist and anxiety medication.
It was in this era, however, that I first really started using TikTok, and became acutely aware of what other people my age in this country were going through. One theme that emerged over and over again on mental health talk and beyond, was that this total world upheaval allowed many of us to see ourselves in ways we never had before. This is Embodied. I'm Anita Rao.
Without the pressure and expectation to show up to an in person office job, some people realized just how depleting that kind of social contact was. Others noticed that without access to coping strategies they've long relied on, they couldn't make it through the day. This led some folks to seeking formal psychological diagnoses, and others to platforms like TikTok or YouTube, where they started sharing their stories.
Irene Chon 1:25
Hey guys, welcome back to my channel. So on today's episode I wanted to talk about the topic of friendship and communities, and how that can affect someone with autism. So let's get into it.
Anita Rao 1:38
That's Irene Chon on her YouTube channel, The Thought Spot. Although Irene had spent years working with autistic children and adults, she never considered that she might be autistic until the pandemic. COVID lockdowns gave her the time and space to get introspective and start investigating some of the things she was struggling with. She first got an ADHD diagnosis, but once she began treating her ADHD, her autistic traits started to rise to the surface. Irene was living with a partner at the time who pointed out what was happening.
Irene Chon 2:10
If he would make me coffee and bring it to me, I would genuinely tell him to remake it in another cup, which is my coffee cup. Because I didn't want to drink it from just any cup, it had to be in a certain mug. And, like, if I wasn't able to do something a certain way it would make me feel extremely uncomfortable and I would go out of my way to make sure that I could do the same things the same way every time. And so that in combination with — I started to get a lot of TikToks on my for you page of other women who are late diagnosed, talking about their experience. And I think it was just, like, a light bulb that went off. And at that point, it was a matter of just seeking an assessment and diagnosis. It was just very quick for me.
Anita Rao 2:59
There is an activist, I think, an autistic activist who has this quote that says, "If you know one person with autism, you know one person with autism." And I know that you you know that quote and you've thought a lot about that. I'm curious about how you kind of connect that to how you were able to identify things that resonated for you. Like, what was it about the representation that you were seeing that you felt like you could finally connect to that you maybe hadn't been able to before?
Irene Chon 3:24
Yeah, so the specific creator that I watched that had me realize that I'm autistic was— I think her name is Lina. And I think she's also Asian American. And just seeing the way she talked and her experiences, it just resonated a lot with me. And there's a lot of things in my life that I'd never really had answers to. Just little things like always being generally confused about social situations. And I've always chalked it up to just having social anxiety or not understanding things and it's somehow my fault, just these very simplistic excuses. And I feel like when I saw someone like her and I, for the first time, saw that it was possible for someone like her to be autistic it just kind of made a lot of sense for me.
Anita Rao 4:17
That account Irene mentioned is run by an autistic therapist named Lina Fang. One of the things Lina talks a lot about is how autism can present differently and people assigned female at birth. Criteria for autism, however, are based on data almost entirely from studies of boys. So it can be really hard for women and AFAB people to get a diagnosis. This reality has led to a certain level of acceptance around self diagnosis and the autism community, which is something that Irene is familiar with.
Irene Chon 4:48
I just want to first say that everyone's experiences with diagnosis is valid just because it's so difficult. For me I wanted a formal diagnosis because, just coming from the background I come from, having these formal labels, I think it somehow validates your experience more. It feels a lot more valid for me to be able to not only speak on the topic, but also identify with the label as well.
Anita Rao 5:17
Was it hard for you to get that formal diagnosis and find that supportive medical provider?
Irene Chon 5:23
I would say it's very difficult because, first of all, there's not much information out there on how to start that journey. I remember first bringing it up to my psychiatrist at the time, and she at the time said I could maintain conversation with her really well, I seem to have relationships with people, I seem to have an eye for interior design, and things like that aren't what autistic people are capable of. And so I was kind of left in the dark on my own and I had to really, truly deep dive and hyper focus on looking for a practitioner to be able to perform the assessment.
And then I had another wall, because everything out there is mostly geared towards children. And when I finally did find places that were able to assess adults, it was places that were hours and hours away. Of course, there's other barriers like insurance and then there's the waitlist as well. So sometimes these clinics have waitlists that lasts up to a few years. And so these were all barriers that I had to try to overcome on my own in the process of seeking diagnosis.
Anita Rao 6:34
So that is such a long journey and a long road that you went down, and you did finally get a diagnosis. And it's only been a couple of years since that moment, but you've done a lot of excavating of yourself and of your childhood and your experiences. And you talk a lot about this on your YouTube channel. And there's one video in particular that I want to ask you about, which is you and your mom sitting down together and talking about what it was like for her to raise you and what you're reflecting on now as an adult that you experienced in your childhood. And one of the things that your mom says, is she says that you were a kid who threw a lot of temper tantrums. And you take this moment to kind of educate her about autism meltdowns and how you are now processing the way that you were as a kid. Tell me a little bit about what you shared with her and what it was like to have that conversation.
Irene Chon 7:26
Yeah, so that video, when we first filmed it, I remember being very closed off emotionally to be able to get through the conversation. Because, of course, the topics we're talking about are very personal and could be very triggering. So it wasn't until I was editing the video where I started to feel very emotional and began to cry. I felt like much of my life I heard from people like my parents or just other people, just this general sense of blaming. You're always wrong for doing certain things or not being able to withstand certain experiences like other kids or other people.
And I think for a lot of high masking autistic individuals, we tend to develop a deep sense of shame and just always feeling like you're wrong somehow, but not necessarily knowing why or not necessarily understanding why it's wrong. And so when I was able to finally explain to my mom, you know, what an autistic meltdown was, it felt very cathartic, but I felt like it was mostly for me. I don't even know if it affected her the way that it did to me.
Anita Rao 8:50
Cultural representation of autism has historically been super narrow. Think young White boys, or the Sheldon Cooper type. This is why the internet has been so huge for some autistic folks who are finally able to see other people with autism who look and act like they do.
Kofi Robinson 9:13
The other day I posted a video on Tiktok asking Black autistics to comment something they wish people knew. Here are the results of those comments. Autistic does not mean stupid or slow. I wish people knew how hard it is for me to talk. The act of communicating and using the right tone is exhausting. I just want to be mute. Black parents need to educate themselves, being uninformed is hurting their Black children. Masking and code switching are not the same thing, but both are exhausting. Especially when doing them simultaneously. I'm able to do any task, just explain. I wish my family would understand that even if I don't show emotion on my face, I still feel something. No one actually knows the real me, just carefully assembled personalities that will make me seem neurotypical enough to pass.
Anita Rao 10:29
That's Kofi Robinson, a Black autistic lawyer. She got her diagnosis when she was 21 and partway through law school. This was all in the middle of the pandemic. And while she could see that everyone around her was stressed, she noticed that the burnout that she was experiencing was different.
Kofi Robinson 10:47
It was a bit difficult because, of course, we all know that law school is hard for even neurotypicals, for the average person. So to have autism on top of it was a lot. But I was able to — to have them differ in my mind by thinking, "Oh, this person is stressed out about an exam, but they don't have a meltdown when they hear a specific person's voice." I was absolutely in burnout because I was depressed for weeks. This wasn't something that went away, it was just very intense. It was hard to get out of bed. It was hard to eat. It was hard to focus. And I was very dissociated by then. It was much more intense than the average law student.
Anita Rao 11:33
You had done some digging at that point to learn a little bit about other people who got later in life autism diagnoses and this experience is that a lot of people who are assigned female at birth have undiagnosed autism for a long time. One study estimated that, like, 80% of people who are assigned female at birth with autism remain undiagnosed when they're 18. So you knew this, you knew some of the data.
Kofi Robinson 11:56
Yes.
Anita Rao 11:56
And all of that informed kind of how you showed up to your appointment where you were getting the diagnosis. So talk to me about that. How did it inform that experience for you?
Kofi Robinson 12:06
Cool, it was shocking. It was shocking to stumble upon that statistic. And — but it made sense. It just made so much sense the way that we are shaped to go about society. Always suffering internally, never externally. Or, especially for a Black woman. Being called, like, sassy or you have a bad attitude. There's a lot of that.
Anita Rao 12:31
I want to talk to you about this concept of masking that you all have both brought up. Irene, I know that you went through a process soon after learning more about autism, where you started to unmask and think about the masks that you were bringing to your interactions. Tell me about that and what you uncovered about yourself.
Irene Chon 12:49
I actually started to unmask years before my diagnosis. But, of course, at the timeI didn't know I was unmasking. It was just — I had such chronic fatigue all the time. And I think this is where the disability comes in. There's moments where you, even if you have to or want to, can't uphold certain aspects of your life anymore. And I hit a point where all I could really maintain was to show up at work. I didn't have a social life and I couldn't mask. So if that meant I would show up to work and not say hi to any of my co workers or have any conversation, that's what I did.
And I noticed that as I was unmasking at these work settings, I was experiencing a lot of ableism, a lot of alienation, a lot of judgments. And at the time, I wasn't diagnosed so I just thought to myself, "Well I guess — I guess I am a standoffish person. I'm someone that's hard to get along with." I kind of accepted these negative labels and it was just because I was too tired to do anything about it anymore. And after I was finally diagnosed, it wasn't necessarily that I was finally unmasking. It was just this experience of, I could finally let go of these negative labels that even I was holding above my own head and allow myself to actually just be and to exist and not feel guilty about it.
Anita Rao 14:19
Kofi, you, after you got your diagnosis, you spent the summer doing an internship at a law firm, and I'd love to know how having that knowledge of your diagnosis changed how you approached work and any accommodations that you asked for.
Kofi Robinson 14:34
I did not come out as autistic at work. If someone discovers it, stumbles upon it online, that's their business. I don't think that I want to discuss it at work because it usually doesn't end well. Even though there are laws in place for us technically, I think that people can have roundabout ways of discriminating against us and do. But because of my diagnosis I am more aware and understanding of the way I appear on the outside, such as my tone. If I'm being too blunt, if I ever need to mask then I can. But for the most part it's — it was a professional work environment. It's not loud. It's a law office. What was expected of me wasn't much different than the person who I am. I have a strong sense of justice. I'm straight to the point. I'm logical, detail oriented. Those are all things that you want in a lawyer.
Anita Rao 15:31
Yeah, there are a lot of traits that you kind of marked in yourself that were advantageous in this law school career and this law school experience. How did the process of unmasking kind of shape how you thought about your own — your own identity and your own personality,
Kofi Robinson 15:48
It was difficult. Unmasking can be very difficult at first, you have to sort of figure out where you end and the mask begins. And you have to figure out what you like, what your boundaries are, and who you really are all over again. I would sometimes mask if I need it, but that's what masking is. It's a defense mechanism. Otherwise, I try not to mask just because it takes so much energy. It's so draining. But I learned how not to mask by trying to figure out who I was when I was alone. I think that's something that really helped.
Anita Rao 16:23
Irene, you talked a little bit about reflecting back on your previous work experiences and you noticed that you've been drawn to a lot of customer service jobs and customer service roles, which do involve a lot of social interaction. I'm curious about why you think you're particularly drawn to those roles.
Irene Chon 16:48
I feel like I was drawn to a lot of customer service type of jobs because, I think intrinsically I am a very empathetic person that wants to connect with other people. But I feel like connecting with other people was very difficult for me. I think, unconsciously, I found myself drawn to these customer service jobs because it allowed me to still interact with other people, but within the confines of rules. Like a certain type of script. For example, if you're a barista, there's a certain script that you follow in order to talk to a customer, and that felt like a sense of comfort for me.
And I felt like, perhaps there was an aspect of me that wanted to learn through these scripts at work, how to carry on conversations with others and get those needs met. But in my own personal life spend that time by myself. And it was just kind of, I think, my way of counteracting that loneliness that does sometimes come with autism.
Anita Rao 17:51
I'd love to ask you about that Kofi because you talk a lot on your TikTok page about friendships and how you think about whether or not you come out as autistic to your friends and also that you really vet friends—
Kofi Robinson 18:02
Yeah.
Anita Rao 18:03
definitely about vetting friendships. So talk to me about that, and how that is part of how you manage some of your autistic traits.
Kofi Robinson 18:11
Yeah, sure. So loneliness is something that I experience. It was very much that way in law school more so because I don't — I didn't have time. I just didnt do any socializing, I had so much work to do. I used to go through this really difficult cycle where I would get lonely, not really know that that's what I was feeling because of alexithymia. It's just hard to tell what your emotions are in times like that. But I also didn't want to socialize.
So the best thing I did was meet other autistic people and learn what kind of people I can be friends with. And they do go through that vetting process of I'm trying to make sure that I don't get hurt because if this is a potentially very manipulative person, I know that I could be manipulated and I don't want that. I want, you know, good people. So if you go through my vetting process, and I deem you a good person, then we can be friends.
Anita Rao 19:09
You mentioned alexithymia, that's when a person has difficulty experiencing, identifying, and expressing emotions. Which is a big part of friendship, I know it's building friendships, it's being able to to know what other people feel and think and have that dynamic. Irene how has masking shown up in your friendships and how have your friends shown up for you since learning about your autism diagnosis?
Irene Chon 19:33
Yeah, so I was very intensely masking in my friendships for most of my life. And of course, that has a lot of effects on you. I think on the surface it just looks like I was never a part of one group. I was always hopping around from one group to another and I think it's because I could maybe mask just enough for surface level interactions, but not enough to be able to see the same people really often. I would hit these walls., like these energy deficits where I wouldn't be able to maintain the friendships anymore. Because a lot of the times when you're masking so heavily in your friendships, it creates a very one sided dynamic where you're kind of just there to serve the other person. And that's kind of the concept of masks. It's built for the person you're interacting with.
And so I think much of my life I felt very lonely because I wasn't able to maintain these friendships. And after the diagnosis — like I said, I was already unmasking years before and so the few friends I did have in my life at that point were already people that were pretty comfortable with my autistic traits. Even though at the time none of us knew they were autistic traits, but just, they knew Irene doesn't necessarily have this high bubbly energy. And they just respect that. And so I would say after the diagnosis, it's helped a lot because I can actually go to them and say, you know, "These are things that I struggle with as an autistic person." I could educate them and they will go out of their way to ask me ways that they could accommodate to me within the friendship and I don't think I've ever had that before. You know, another person asking me how I need to show up and how they could show up for me.
Catherine 21:29
Hi, my name is Catherine. I've always felt different, but I never knew why. By my late 50s, I was dealing with extreme social anxiety and frequent sensory overload. With my lifelong fascination with numbers and patterns, I wondered if I could be autistic. One expert told me no, I was too easy to talk to. She didn't realize how exhausting it was for me.
Sarah Rivera 21:55
My name is Sarah. I never suspected that I was autistic. It wasn't until I started seeing a counselor for my depression that she noticed certain signs, and that's when I chose to pursue a formal diagnosis. I was 32 at the time of my diagnosis. As far as how it impacted my life, it really just made sense of everything.
Catherine 22:24
This summer, I joined an online community for late diagnosed autistic people. We each have unique lives, but we all struggle with the same things. And I finally know I am autistic.
Sarah Rivera 22:39
This is who I am, and this is why I'm this way. I am just not a strange person. I am autistic and it kind of helped me develop a better identity of myself. The only thing that I was upset about was the fact that my diagnosis came so late in life, and I did not receive the therapies and other things that could have actually made my childhood, young adulthood and adulthood a little bit easier.
Anita Rao 23:14
Feeling sadness and grief after later in life autism diagnosis is relatively common. And something that Jenni Chapman also experienced when they got a diagnosis at age 25.
Jenni Chapman 23:25
It almost felt like years that were lost. Because things could have been so different had I had that information.
Anita Rao 23:32
Jenni is a queer, non binary actor and photographer who has documented a lot of their reflections about getting an autism diagnosis on Instagram. One of their posts that I found super interesting drew parallels between coming out as queer and coming out as autistic.
Jenni Chapman 23:47
We're referring to it as coming out as autistic. And what I realized was that they were the same steps. First, you get, like, a little inkling, right? You start realizing that you're not quite like other people in a certain way. And maybe you take the, you know, "Am I gay?" quizzes online. Or you, like, you know, look for autism, like, diagnostic quizzes. And you start going, "Okay, like, this is really me, oh, my gosh." And then you have to get to the point where you maybe want to tell some people but you have to gauge, first of all, who you're going to tell first, how you're going to tell them, and how you're going to cope with potentially a more negative reaction. Coming out as autistic, you know, especially as an AFAB person, like, people were straight up like, "No, no, you're not." And I was like, "Oh my God, thank you for letting me know.
Anita Rao 24:41
[Laughs]
Jenni Chapman 24:42
I went through all of this and you just — thanks for — okay, bye." And I grew up doing theater, I still do theater. And I think I learned a lot about how to mask and how to act neurotypical through theatre. Not just interactions with my peers who were doing the shows, but also just through character work. I think I have done a lifelong character study of neurotypical people and how to mimic their mannerisms and their tone of voice and all of that. But that all connecting back to coming out and having to come out all the time.
Anita Rao 25:17
Yeah.
Jenni Chapman 25:18
Both of as queer and as autistic. And you have to constantly gauge the acceptance or level of safety that you feel with the people that you're with and how much you're going to mask or not mask or display PDA with your partner or not.
Anita Rao 25:34
Well, I want to ask you about your your partner a little bit.
Jenni Chapman 25:36
Yeah.
Anita Rao 25:37
So you've got this diagnosis. When you all work together, the two of you have been together for more than six years, you've recently got married.
Jenni Chapman 25:46
Yeah, yes we did.
Anita Rao 25:46
I'm curious about how getting the diagnosis has given you language and a framework for — for y'alls romantic relationship. What you all have begun to unpack and piece together since getting the diagnosis.
Jenni Chapman 26:00
Yeah, I mean, we'd been together, honestly, slightly more than half of our relationship before any diagnoses were happening. And we were just aggressively trying to love each other and support as best we could. My wife has ADHD, which she actually found out more recently than my diagnosis. So there was this shared neurodivergent understanding, even though we didn't have words to describe that yet.
But after my diagnosis, and then, of course, after hers, were able to understand why our brains work certain ways. I like to think of people's brains as like computer software. We all have word processors, we all have, you know, an internet browser. But the code to make those different things happen is different depending on what type of brain you have. And the diagnoses for me especially, were the key to understanding the way that my brain code worked and so I could understand and explain it to her. So we were able to find ways to mutually support each other much quicker. Because we actually had the ingredients of understanding why things were happening or misfiring.
Anita Rao 27:16
Have there been particular things that you have asked of your wife, or that you all have been able to navigate in the context of touch and sensory things related to your autistic traits in this phase, since getting a diagnosis?
Jenni Chapman 27:31
Yeah, um, my main love language is physical touch. And that doesn't even necessarily have to be sexual, like, it's just, you know, skin to skin pressure. Like any sort of hug or, you know, petting my hair or whatever, like, that is really good for me. And that is not my wife's love language at all.
And so being able to take it beyond just, like, "This is my preference." But also exceed through the autistic lens of, like, to regulate myself in not only in moments where I'm feeling happy and okay, but in moments where I'm really upset, and maybe not quite verbal, and not able to express what I need. That's a go to, for her that is going to be successful every time. We're now going, very objectively going, "This is what works for me, let's try this." And being able to step outside what is maybe the first thing you'd think of to do, because it's what you'd prefer to be able to love each other better.
Anita Rao 28:35
I know that you and your wife want to have a kid and you've begun to talk about preparing for that process, which is— I don't have a kid but I know is like the epitome of overload every single way. So how are you all thinking through that and building systems that will hopefully serve you in those higher stress moments?
Jenni Chapman 28:54
Yeah. Well, first of all, I am not the one that is going to get pregnant. I've never wanted to be pregnant. I resigned myself to a childless life until I met her. And she's always wanting to carry and so you know, one and done. We're very happy we figured that out. But we're trying things out now that can accommodate specifically me, but, you know, also her. Now that can translate to the ultimate sensory overload of having a young child, I have these, theyre called loop earplugs that are really fancy technology that I can actually understand you quite clearly if you're right in front of me speaking to me, but the background noise is incredibly muted.
And that's been very helpful in, like, if you and I are speaking and there's music playing in the background, I cannot form a sentence. But also that's going to be really helpful when we have a newborn that is screaming all of the time, and making less frequent the times when I need to take a break and step out for a second which will will allow me to be a more present parent. And so trying to think of those systems as much as we can ahead of time, so that we can not only give our kid their best shot, but also give us our best shot to be impactful, as regulated as possible parents.
Anita Rao 30:15
I love how Jenni and her wife are identifying accommodations now to support their future selves, serious life and relationship goals. Jenni has also done a lot of work to build in accommodations for themselves and their professional life. She scheduled her photography business in a way that gives her the flexibility to take a break if she's having a tough sensory day. And she's identified what things can make their acting experience more comfortable, like no rough name tags in the back of her costumes. If you're listening to this and wondering about how to support yourself or someone in your life who has recently gotten an autism diagnosis, here's Jenni's advice.
Jenni Chapman 31:03
It can be jarring to learn that information about yourself even if you sort of suspected it for a long time. And the thing that was key for me was realizing that it's just a reframing of what was already there the whole time. And I quite liked myself before my diagnosis, I think I'm a cool person. And it's not like this illness that you contract or something that is wrong with you. The autism itself, at least in my mind, is not the disability. The disability is having to exist in a world that isn't built for you. If autistic minds had built the world neurotypicals would be the ones that are disabled. And so in the end, it became a reframing of my own concept of myself and I went "Okay, well, if I liked myself before, I was autistic before I just didn't know. So by the transitive property, like I have to continue to love myself now." Because it's the same person, I just have more information, I have a user manual. And then how that translates to romantic partners or friendships is now you have the user manual on how you can be a good friend to others and how others can be a good friend to you, you end up making better friendships and better partnerships because of the additional information that you have about your brain and how you work.
Anita Rao 32:21
Embodied is a production of North Carolina public radio WUNC, a listener supported station. If you want to lend your support to this podcast consider a contribution at wunc.org now.
You can find more about everyone we talked to in this episode in the show notes, and I also want to give a special thanks to Sarah and Catherine for sharing their stories with us.
This episode was produced by Gabriela Glueck and edited by Amanda Magnus. Kaia Findlay and Paige Miranda also produce for our show. Skylar Chadwick is our intern and Jenni Lawson is our sound engineer. Quilla wrote our theme music.
Thank you so much for listening to Embodied and if you liked the show, please spread the word in your own networks. Word of mouth recommendations are the best way to support our podcast and we so appreciate it. Until next time, I'm Anita Rao, taking on the taboo with you