neurodivergent self-realization, disclosure and college life: a conversation with shelby goodwin

This winter, I had the opportunity to have a conversation with Shelby Goodwin for this issue of NeuroNurture’s online magazine. As soon as I heard Shelby speak about her research on autistic sociality and moving towards more inclusive theories of social interaction at the senior sociology capstone presentations, I knew I wanted to talk to her for NeuroNurture. On a cold Wednesday evening, we sat down on the couch of her North Campus Apartment and talked about many things, including autistic identity and the diagnostic process, the intersection between gender and neurodiversity, and life at Kenyon. Shelby is now a graduate of Kenyon College in Sociology and I am beyond excited to share our conversation – her responses left me thinking about all of these huge topics within the neurodiversity movement in a much more thoughtful and nuanced light.

NN: Tell me about your early experiences of feeling like you might not be neurotypical.

SG: I think I always, deep down, had some questions about it, because my brother is autistic, and he was diagnosed as a child, and I remember feeling this sense, like I had some questions regarding why I related to him so much. I have three other siblings and he was the one who was diagnosed autistic, but I do feel like another one of them is undiagnosed. We got along really well growing up. First of all, I didn't even know he was autistic until very late, and I was like, “why didn't you guys just tell me this?” But I remember my dad explaining his disabilities, he'd be like, “everything's just a lot harder for him,” and I remember feeling kind of frustrated and being like, “things are really hard for me too,” and not saying that, but always thinking that. And it turns out, it's because… we have some of the very same disabilities. And he has different learning differences than me, but we both have autism and ADHD. And I think when I really started to take it seriously was largely because of internet exposure to autistic women who were talking about being diagnosed later in life. And I kind of would just shove it back in my head and tell myself that there's no way. And then I really was struggling my second semester of my freshman year when school was virtual. And I found that to make everything a lot harder, and I really noticed how slowly I was moving on assignments, and I got so frustrated, and so I was talking to my therapist and my mom about it, and my therapist was like, “yeah, you do have a really different approach to learning and processing information, maybe you could learn more about that if you do a neuropsych eval,” and so I went into that looking for an ADHD diagnosis, because I was more confident about having ADHD than I was about autism. This was because I just had [this idea] ingrained in me that that wasn't possible for someone like me because I did well in school, and even though I had horrible mental health in various phases of my adolescence, I told myself that it just wasn’t a possibility because I [thought] of the way people talked about autism around me. I remember talking about my family history with the neuropsychologist who evaluated me for ADHD, and this was when I was 18 or 19, in freshman year, and she was like, “okay, you have a family history that's positive for autism because of your brother, but obviously we're not looking into that.” She was like, “obviously that's not something we're considering,” and she literally said that. And I was like, “okay, I guess I'm not going there,” and it made me feel like I couldn't say, “wait, but can we go there?” I wasn't confident enough, and she was missing the signs because she probably hasn't been trained to look for them when they present the way they do for so many people that are more similar to me in terms of support needs and gender and school success.

NN: Like many neurodivergent women.

SG: So then that outcome was that I had a very specific neurodevelopmental disorder

in the area of visual spatial processing, which is so funny because, what a sign of autism. You're telling me that I have this huge discrepancy in my skills when it comes to verbal stuff versus spatial reasoning, and autistic people are known for being really clumsy and having a lack of coordination sometimes, but, obviously, not everyone. And then they were like, “we're not really sure if you have ADHD, and we're not going to say you don't, but your anxiety and depression are so bad that you need to take some medication and then maybe we'll revisit that,” which was ridiculous.

NN: That is ridiculous.

SG: I was thinking, “um, okay.” But I guess it's really common that they say, “take an SSRI and if you can't focus still, it's probably ADHD.” And then I got closer to someone at Kenyon who actually doesn't go here anymore, who is autistic and was diagnosed as a teenager shortly after their parent was diagnosed. I talked to them a lot about it and she really encouraged me to actually take it seriously and look into it. That was when I worked up the courage to talk to my parents about it and talk to my therapist about it. I'd been hiding my questioning from my therapist.

NN: And your thoughts that you might be autistic.

SG: I'd been hiding it from everyone but my friends, my boyfriend, and then I talked to one of my parents about it and they said all sorts of things, but weren’t dismissing it entirely, and then I talked to my therapist and she was really receptive and trying to help me find people who could evaluate me, but she was also struggling to find people who would be a little bit more specialized in people like me, being diagnosed later and being a woman. And my mom's a therapist and she said, “maybe you have OCD, but I don't know about this, but I do encourage you to explore it.” So, overall, my parents were pretty supportive but they both said some things in the process that displayed a lack of knowledge and education about autism. It made me upset and angry on behalf of my brother that they did not know certain things about autism, but it also made me angry, I guess, on behalf of myself because they probably would have noticed sooner.

NN: They would have noticed, had they been more educated about neurodiversity and how it manifests across support needs.

SG: Yeah. I was explaining to one of my parents why I suspected I might be autistic and I referred to special interests, and they were like, “what do you mean by special interests?”

NN: Like, that's a hallmark of the neurodivergent experience.

SG: And so then I started trying to go about diagnosis because I did feel like I wanted to. I had access to that financially and I wanted the accommodations that could come from that, and, also, I wanted to just figure it out for myself in terms of identity, so I did choose to do that. Have you ever heard of the site Embrace Autism?

NN: No, I haven't.

SG: Okay. Well, it's, this autistic psychotherapist based in Canada and she offers evaluations, but she also does pre-evaluations where you give a bunch of information and she tells you if it's worth looking for a formal diagnosis. And I did that and she was like, “yeah, you should consider looking for evaluation further.” And I told my dad that and he said, “okay, let's do someone through your therapist” because he really likes my therapist. And then the psychiatrist that my therapist recommended, first he diagnosed me with autism. He didn't even meet me that many times. I think we met once or twice and then he diagnosed me, and he talked to my dad and me, and that was it. It wasn't even that comprehensive because he's a psychiatrist, not a neuropsychologist. And he said, “yeah, you're right.” And he said, “What matters is what you do with this diagnosis, you can learn compensation strategies. I have a client where we work on eye contact,” and I was thinking, “I don't know about that, I definitely want support, but I don't know if I want to focus on that.” And then I looked online for some of the lists that autistic people have compiled of providers and people who do the evaluation process who they trust. And there was this group of psychologists. I don't remember what it was called, it was based in New York and L.A., and I reached out to them and this guy did diagnose me, but he took so long because he thought maybe I had nonverbal learning disability.

NN: I feel like everyone's like, “oh, that's so similar to being on the spectrum,” but it's not being on the spectrum, to my knowledge. But a lot of people with it might identify as being on the spectrum. I don't have it, so I don't know.

SG: And he wasn't sure what to do for a while. He said, “I don't know, you're really complicated and I think you might have this, but you also might be autistic,” and I was kind of confused about whether you could have both of those things. And it didn't really seem like nonverbal learning disorder encompassed some of the social stuff. And he diagnosed me with autism and ADHD.

NN: I just feel like there are so many things that people still just don't know about how neurodiversity presents in women and people who meet certain societal benchmarks. Like, I mean, you and me, we're both speaking, we have robust social lives, we go to a good college, we're good students. That doesn't mean that we're neurotypical. I think that there's something to be said about the online community. Anyone who's talking about all of it is just doing something so valuable.

SG: Yeah, I mean, if I hadn’t met a person at Kenyon who's autistic, maybe I would have gone down this road. I think that having people talking online, especially people for whom it’s part of their job, influencing people in terms of neurodiversity [helped]. I feel like I really loved, do you know Neurodivergent Insights run by Dr. Megan Neff?

NN: I don't. 

SG: She's really great. She's a psychologist and she's autistic and has ADHD, and she didn't find out till later. But yeah, even nonprofessionals online, just talking about figuring things out, helped me so much, and I feel like the medical community, because they kind of resist the social model of disability, which is coming up more online and becoming more popular, are [resistant to the online conversation that is very social-model oriented].

NN: Oh, yeah, for sure.

SG: I feel like some of the medical professionals don’t appreciate that. I remember telling my psychiatrist, not the one who diagnosed me, but the one who was giving me medication for other things, that I was considering this, and she was telling me to be careful about what I see online, and I was like, “I don't know, what I see online pretty much changed my life in a good way,” and obviously there's misinformation, but it was just that she was really dismissive, and then after my diagnosis, she was like, yeah, think about it more, it makes less sense, and I was like, “that's not fair.”

NN: That really isn't fair. I think a lot of the people who are making content about autism or neurodiversity online are changing or even saving people's lives. To see somebody talk about their unfiltered experience is amazing. And to see somebody who's actually talking honestly about feeling different online, that's so revolutionary. And, yeah, especially for people who are late or late-ish diagnosed or, I don't want to just say late diagnosed. I would probably consider late diagnosis to be if you get a diagnosis after you've been wondering for a long time what's going on. I don't know what the formal age or definition is.

SG: I don't know either. I know people, some of my friends, their ADHD diagnosis, I would see as late, but it was still while they're teenagers, not while they're adults. And that's still different than little boys getting diagnosed when they're six.

NN: Or… two.

SG: Two. Literally so small.

NN: I feel like without the right resources and without a family that talks a lot about neurodiversity, people can be overlooked. I think everyone in my family is neuroatypical in some way and open about it. So that led me to read a lot about it when I was younger and be like, “oh, maybe this is me,” but then I pushed the idea down a little bit.

SG: Yeah, I feel like a lot of people go through the phase of pushing it down. It's just this doubt that it doesn't apply to you and part of it, I think, is because there are people who criticize online discourse and say, “everyone's autistic these days.” And we're talking about a difference between a bunch of people going undiagnosed and those same people now starting to get diagnosed. I don't know if we're talking about the prevalence of autism, since we're also talking about a shifting definition of autism, which makes sense. It's never going to be the same criteria because it's not this purely biological thing. It's defined, in my opinion, after reading so much about this for my capstone, by… the types of sociality that we privilege and what we view as normal. But, obviously, there are genetic components to autism, and I'm not denying that. What I was also going to say is, I don't want to dismiss people who critique the way we are so individualistic now as a society and we latch on to any identity we can find that we see people talking about online. Some people are wrong about thinking that they're autistic because they relate to the strangest little things. People talk about rubbing their feet together in bed. And it's like, okay, we're human beings. We need to stim sometimes like everyone does to some extent. So I do get that because it is kind of, we do that with a lot of things now online. But that's just not the whole story at all. And a lot of people who do research in the sense of reading diagnostic criteria and looking into people's stories of diagnosis, usually they're not wrong when they come to the conclusion that they think they might be autistic. I don't know a lot of stories like that. 

NN: Yeah, I don't think I have either, I totally agree with you. I have another question that we touched upon a little bit before – when did you realize that you wanted to start talking about this? Because, for me, I didn't talk, I didn't say anything to like a lot of people, like even, like even close friends about my own neurodiversity until I was like well into high school. So when, what was that turning point for you? Like, was it at Kenyon or when you met that person? 

SG: Well, it was definitely at Kenyon because it was as a freshman that I started thinking about serious things when it came to neurodiversity. And then as a sophomore, I started that process of talking to my therapist and my parents about it. And then the summer before my junior year was when I got diagnosed. So, and like throughout the process of seeking a diagnosis, I did talk to my friends about it. But, I was like, maybe I'm wrong. And I was like open to that possibility, but I was pretty convinced, honestly. Yeah. And, honestly, as soon as I got diagnosed, I told my friends and I think it motivated me to learn more about autism. So, [when I was seeking the diagnosis] I was really curious. And after the diagnosis, I became even more so. And I just talked to people about stuff that I was learning and reading. And I don't have a lot of autistic friends, but I don't have [a lot of] neurotypical friends.

NN: I think neurodivergent people find each other. 

SG: Yeah, And so it's like, I feel like it was easier for me to talk about it with people because of that, but it's definitely been a process, disclosing with people that you don't know that well yet or like having the urge to make an autism joke or a comment sometimes. And then there's like someone there that I don't know that well. And it's like a little bit of a question of, “do I want it?”

NN: Like, do you want to reveal that like part of yourself and your status to them? 

SG: And like, will they get it? 

NN: Yeah. No, “will they get it?” is such a question. 

SG: Yeah. And then I also have this feeling of like, am I being like that annoying person who's like bringing in irrelevant identity into it, even though like it's so, it's really like a strong part of my identity. Like I know everyone's different, but it's like, I think because I didn't have it for so long and I was so confused about why I was the way I was. Absolutely. I'm really attached to it as my identity. 

NN: That makes so much sense.

SG: As a young, isolated teenager, I was fully convinced that I was like one of those starseeds or an indigo child. I was looking for something to explain [this]. So it's definitely important to me. It's not something I hide very often. And right after my diagnosis, I was taking a [sociological research methods class] and I did research on autism for that class. So I guess I was also interested in writing about it and learning more in that context too, pretty immediately. My proposal was about gender and masking and autism diagnosis. And my idea for the project was that I could ask people who are women and diagnosed later, as adults, like how that affected their diagnostic process, because I was kind of seeing this trend that part of masking aligned with performing femininity. 

NN: Oh yeah, 100%. That's so true. 

SG: So, the question is, how do you unmask enough to convince a provider that's evaluating you that you are autistic without crossing a bunch of gender boundaries?

NN: I think you can't talk about neurodiversity without talking about gender norms, I think. I think women are socialized to be so restrained and I think that there's this very specific type of femininity that's given a lot of validation by our society that aligns more with the neurotypical experience. I remember, when I was younger, I really enjoyed socializing and am an extrovert at heart, and it’s a very important and meaningful part of my life, but I always remember like when I was younger and I was super interested in something, like there's a very non-neurotypical feeling where you can't get it off your mind…

SG: Yeah.

NN: Like, there's so many things where I was like, “wow I want to talk about this so badly with other people but I don't want them to think I'm weird so I'm not going to talk about it” and I think gender norms played such a role in this because I saw so many boys and men talking about what they were interested in, like there would be boys in my class who would only talk about one thing and that and like it wouldn't be seen as weird, but if a girl had a very intense interest in something and that was like the one thing that she wanted to talk about that would be weird, and I picked up on that pretty early as best as I could, and maybe sometimes I didn’t. I don’t know. I think gender norms played such a role in that. I have a Kenyon-related question now.

NN: Do you feel like Kenyon is a conducive space for being openly neurodivergent?

SG: I think it can be and it definitely has been for me but I think that it's also it also presents challenges because even though it's not like party culture isn't like the like the big thing about Kenyon and it's not really you don't have to participate in it in order to um like have a social life. It definitely affects me because, even when it's just like something that's like a relatively small party, it's still not that accessible like if you're really easily overstimulated by sounds and smells, since there's a lot going on at some parties. And the touching, the being so close together, and all. I feel that even with people who aren't [neurodivergent or autistic] it can just feel socially isolating. Because even if your friends love you and love that you're autistic and respect your sensory needs, they're not going to not go to a party to hang out with you. 

NN: Yeah, totally.

SG: And, I want my friends who really thrive and like to go dance… to go do that. It doesn't affect my openness about my identity but it does affect like my openness about not wanting to go, and I don't always want to say “that sounds like hell” and that I don't want to go and [don’t always want to] say “sometimes I wish you would hang out with me instead like.” I'm still working on being more open about that with anyone besides my boyfriend. I feel like I have a hard time being like, “this change in plan and this party actually made me… go crazy,” or like, “it was a totally over stimulating experience,” and I can share, “that was really loud” but I can't be like, “I'm actually gonna go cry in my room now,” you know what I mean. I can be open to a degree, but with identity I think it's easier for me to be like, “I'm autistic” than it is for me to be more open about the parts of being autistic that I still have some shame about. What's really been hard for me is explaining those types of things [that have] always been a part of my life, like meltdowns, for example, I didn't really know what they were and, now that I understand them, how do I make other people understand that?

NN: Yeah, 100 percent. I think a lot of people are like, “oh yeah, I completely accept autistic people and the ways in which their autism manifests,” but I think it's very different like when you're experiencing that and like you're scared of feeding into stereotypes. Like, a neurodivergent person could be in a situation where they're friends with a lot of neurotypical people and they're trying to explain their sensory needs or social needs and I think that that can be really difficult. Thank you for sharing that.

NN: It's totally okay if you don't want to share this or if they don't want you to share this, but is your partner neurotypical or neurodivergent? 

SG: I think he might feel deep down that he is not neurotypical. And I think it's really interesting because I felt like learning about my identity and getting my diagnosis kind of affected how I saw him because I learned more about neurodiversity.

NN: Yeah, absolutely, that makes a lot of sense. I was gonna ask about relationships in general and like disclosure and that type of relationship because it's something that's occupied my mind a lot recently. When you're in college you have all these new experiences, some of them non-platonic, and I think disclosing to a friend is so different than disclosing to somebody who you're more seriously involved with in a romantic way, so, how did you go about that and what like what would be your advice for young people who aren't open about their neurodiversity yet but are dating or looking to date?

SG: [My partner] was always someone that I felt really comfortable talking about it with, even before my diagnosis. I talked about my suspicions because he's a really open-minded person and I think we had already established so much trust by the time I was considering it and thinking about it. I think for people who are dating or just like interested in any sort of romantic and sexual relationships with other people and who don't usually disclose or haven't disclosed to anyone or only have a few people in their lives, I would just say it's important to consider how important it is to you and the extent to which you can get your needs met in that relationship without disclosing that. I think you can get to know someone and try your best not to be masking all the time if you really like them, and you feel like they like you as authentic as you can be, but I know it's easier said than done to try to be yourself and not mask all the time. I feel like when I first met [my partner] I was definitely on guard, thinking, “I really like this person, and I’m not gonna act like myself.” Also just considering the energy [is important], because it's an investment to be that vulnerable with someone, and, if you just met someone, or, even if it's been a while, I don't think you're obligated to tell people that you're neurodivergent in any way because it's your identity. And I think you can, to some extent, be open about your needs and like things about you that might be a little bit distinct without necessarily explaining why. I think it's important to feel like you can fully trust someone, but it's [also] not your fault if you misjudged someone and they are not very responsive or don't react positively to your disclosure. That’s something you never fucking know… some people seem so kind and open-minded and then they'll just say crazy shit like as soon as the word autism comes from someone's mouth, or OCD, or ADHD.

NN: Yeah. Disclosure is a very personal choice, and maybe you don’t mind disclosing or don’t mind that person seeing you as an autistic person but you don’t want every single action you do or word that you say to be interpreted through that lens. Or maybe some people might but I definitely feel that whenever I consider disclosing, I often worry, is everything I do going to be seen by that person through that lens? A conversation I had in sociology class today made me think a lot about this. And speaking of sociology, I was going to ask you, and this can be neurodiversity-related or not, but why did you choose sociology as a major? 

SG: I didn’t take sociology until my sophomore fall or take intro until [then]. I think it was mostly just this strong alignment with my own style of thinking. I feel like everything I learned in intro sociology was very intuitive and it wasn’t only a feeling of, “I’m good at this and I understand it, therefore, that’s what I want to do.” That was definitely a part of it, but it was also that I think it’s really valuable and widely applicable in terms of whatever I end up doing, in addition to being something that makes a lot of sense to me. I just love sociology so much. Like I said, it just aligned with my beliefs already and also taught me a lot, and gave me language to describe things I didn’t know existed. 

NN: It’s a really fabulous discipline. I remember in my intro, Institutions and Inequalities, learning about facework. I was thinking about facework for neurodivergent people, and I’ve always been so interested in how neurodivergent people interact with institutions and people, and when I read Goffman and his dramaturgical theories, I was like, “wait, this is something people can study? People can study these social phenomena and interactions and things that happen between human beings, and they can use that to make society better.” And I thought that was so beautiful. And sociology is so theoretical but so tangible, like you can do so much research that’s inspired by the theory that you read, and then that research can lead to policy.

SG: Yeah, sociology’s awesome. I think there’s something to be said about autistic people and sociology, and I don’t know exactly what it is, but I feel that there is something.