Autism Interview #179: Andi Barclay on Late Diagnosis and Autism Prejudice

Andi Barclay was diagnosed as autistic as an adult at the age of 24 during her first year at graduate school. Within months of that diagnosis, Barclay published a few articles on NeuroClastic on her reaction to that recent diagnosis. Barclay thought it was important to immortalize those raw and honest feelings when they were fresh because she knew she would quickly forget how that felt. Barclay didn’t see her feelings represented in the autism blogs she was reading, and wanted to change that. This week she shared her experience grappling with a new diagnosis, prejudice about autism, and fitting into the Autistic community. Below is a transcript of our interview that has been edited for clarity.

What led to you wanting to pursue a diagnosis and what was that process like for you? Was it presented in a positive, negative, or neutral way?

The first time someone suggested to me that I might be autistic was when I was an undergrad. My brother who was in high school at the time said he thought I had Asperger’s. I don’t even remember why he said that. I think he was partially joking, but only partially, and at the time I didn’t know anything about autism or Asperger’s. And so I was offended. 

And a couple of months later, I finally looked it up to see what Asperger’s even meant. A lot of what I found at first was medical resources by physicians. I read and watched a lot of content by Dr. Tony Atwood, who is one of the first people who comes up if you search ‘Asperger’s in girls’– at least it was in 2016. He said in one of the videos that girls don’t get diagnosed because they tend to present more with anxiety than what they called “problem behaviors.” And I always was a really anxious kid, so that seemed consistent. 

I also found this chart about Asperger’s in girls and I weirdly related to all the things on the chart, which was creepy. But then I was torn between also feeling like, “Okay, well maybe they just over-generalize material.” It almost seemed like when you read horoscopes, and they clearly are intentionally phrasing things to be just so generalized that everybody relates to them to get more attention. It felt like that, so I thought, “Maybe that’s what’s going on.” 

And then, I came across a couple of actual YouTubers, who personalized the experienced, and I felt like I really related to them. There was this college student studying physics named Anja Melissa, and this engineer from Australia who had a channel called Asperger’s from the Inside. And I was like, “Oh wow. They seem a lot like me.” But then again, everyone’s relatable in certain ways. 

Anyway, I read that even if you did want to pursue a diagnosis, it was really hard to find someone who was qualified to diagnosis you, and it would cost a lot of money, and I didn’t want to spend it. And if I used insurance, my dad would find out, so I just dismissed it. 

There are also parts of it that made me uncomfortable, like Tony Attwood. Just the amount of empathy that physicians would have when they talked about it. And I thought, “That makes it seem like it’s a painful or hard experience.” I don’t know. It just made me uncomfortable. 

So I dropped it until I was having a lot of anxiety at my first year at grad school. I got to a point where I just cried twice in a professional setting. And I was routinely waking up at 3:00 AM, not being able to stop thinking. One night I finally had heart palpitations when I was trying to go to sleep, and that scared me. So I went to the doctor about anxiety. 

Because I’d read that autism could be related to anxiety, I brought autism up, just trying to give as much information to make that stop. For some reason I thought that having more information would help the doctors. But honestly, in hindsight it didn’t. The whole process of going through an autism diagnosis is stressful and not the kind of thing that reduces your anxiety immediately. So I wouldn’t necessarily recommend that. 

That’s what I’ve heard. But how long did it take? Did you have to go back several times to get a diagnosis? 

When I initially went to the doctor about anxiety, they gave me a referral, and I called around and finally found someone who could do it, but they were booked for the next two months. So I made an appointment, but it was two months out. And when that finally came around, I had three appointments, and they were each a week apart. The first two were the actual assessment and then the third was getting the results. So the first two were three hours each. And then the last one was only an hour. So it’s three weeks in between the appointments, plus the two months–it was almost three months later, before I finally even got the results. I think having to wait and being stressed out was stressful.

When you actually got the diagnosis, at that last appointment, how was it presented? Was it positive, negative, neutral? Or were you given resources at the time that you thought were helpful or did you feel left on your own to figure this out?

When the psychologist actually said that I was autistic… Somehow he misinterpreted when I was explaining why I was there. I mentioned my family history and that my mom had bipolar, and he said, “Congratulations, you’re not bipolar.” And I’m like, “What? I wasn’t even…” Then he said, “You have autism.” It was a congratulations on an alternative to being bipolar. And I’m like, “This wasn’t even something I was questioning.” So, I felt like he wasn’t paying attention. That made me question his ability to make major medical decisions.

But his voice was also really empathetic when he said it, which… I don’t know. Anytime people are super empathetic like that, it’s like they’re pitying you for something. And I thought, “Does that imply it’s a bad thing that I need to be pitied for?” I was a little uncomfortable about this. And then he gave me some forms to sign because I was a student at the time, so to connect me with the disability student program for test taking and stuff. Half the conversation was him asking “Is this what you will need? And I’m like, “I don’t know. You tell me.”

So, was it a little bit patronizing then? Or was it more like he was trying to help you feel empowered? When you left, did you feel like any sense of relief or was it more like confusion and questions and anxiety?

I think I was just overwhelmed. Which is weird, because I knew that’s what I was there to find out. I guess I convinced myself that I was definitely not autistic. But I would oscillate back and forth between, “Yeah, maybe,” and then like, “No, this is silly. What am I doing?” 

So, I don’t know if I felt patronized. I just felt like there was a disconnect with the whole empathy. He was clearly trying to be nice, I think. I just thought I didn’t relate to the way he found that being nice was.

I think that’s like how a lot of doctors are. They will act super sweet, and I’m just like, “I prefer if you’re just straight with me. Don’t try and coddle me.”

You’ve written that you “fear that excess inclusion risks undermining available autism supports if such inclusion indicates the community is becoming more about fostering belonging than about satisfying medical requirements.” Do you have an idea of what “excess inclusion” looks like? Or what might some practical indicators be that signify inclusion is becoming problematic?

It was a delicate topic. And I was aware of that when I wrote it. But I was trying to be diplomatic about how I worded this and to not be offensive because inclusivity is generally a good thing. 

If I remember correctly what I was thinking at the time when I wrote this, it was something along the lines of how the purpose of medical diagnostic labels is to help with whatever the condition is, be it to provide medicine or in this case therapies. And I felt like I didn’t need any therapies because there wasn’t really anything wrong with me (besides a crap ton of anxiety, obviously, but that seemed like a separate thing). However, I knew… There were other people who qualified as autistic who had legitimate medical needs. I was mainly thinking of people who needed resources for communication or people who couldn’t go places because they would get overwhelmed. 

If I fell under that same umbrella, then it seemed like a disservice to them. Because I figured if everyone who was autistic didn’t benefit from the same therapies, then the people who did need those therapy resources would have to validate why they needed those resources. And it seemed like it defeated the point of the diagnostic label–if it didn’t tell you what the person needed from a treatment decision-making standpoint. 

But I suppose, like with other medical conditions, it’s rarely as simple as saying, “Everyone that meets diagnostic label A, receives treatment B.” It would just seem so much more convenient though, if it were as simple as that. As a researcher, I like my classifications to be more cut and dry.

I also think part of my motivation for that statement was that I was having trouble admitting my own weaknesses. And so it felt a lot more comfortable to ignore them, and that colored my perspective. 

But you also asked if there was anything practical that could be done. Just more research to understand autism better. Because it’s such a big, nebulous thing that can include so much, that breadth seems to imply that we don’t understand autism that well, maybe. But I haven’t read all the autism literature. So maybe that’s just me being uninformed.

I’m reminded of conversations that I’ve had with people about the diagnostic label and there is some disagreement about how wide of an umbrella it is. Some people say that generalizing the autism diagnosis is great because it fosters more understanding about what autism is and that it creates a sense of belonging even among people who have high support needs and others who don’t have the same needs, because they still share something. It fosters community. But at the same time, it’s also certainly less descriptive and I’ve heard some say that it dilutes the autism label. I do wonder how many people question or don’t pursue a diagnosis because they have lived a life of masking, or have navigated NT life so long they have become accustomed to living without accommodations. 

Yeah. I think the breadth of how autism is defined makes it a little harder to understand too. And some people just have a misconception about what autism is, not knowing that it is as inclusive as it has become–I think that could deter people from getting the diagnosis. I never would have been diagnosed if I hadn’t come and said, “Hey, I did research on my own and I have a rough idea of maybe what this is. Can you confirm it for me?” 

And I think having done that research a few years before I actually was at a point where I felt like I needed support helped too because I don’t think I would’ve had the mental space to do that at the time that I was having massive amounts of anxiety. 

But I’ve also gotten a lot of feedback from people who have told me that they really relate to what I’ve written and that seems to suggest that other people do share some of those feelings.

So yeah. I definitely think that some people don’t get diagnosed because they either feel like they don’t want to dilute the label, like you said, or if they’re ashamed of the societal prejudice of how we view autism.

I’ve heard from a lot of people that getting yourself mentally prepared to go through the diagnostic process, and then planning and executing the logistics of it is difficult. I’m curious if you’ve experienced any kind of relief or a new sense of belonging since your diagnosis. You write a lot about how you question your own prejudice and whether you belong in the community and your own prejudice about what it means to be autistic, but, has there been any positive side to any of that since you’ve received a diagnosis? How long have you had a diagnosis?

It was February 2020, so not quite two years. It’s still fresh. I don’t know if this really colored my perspective, but I felt like the pandemic coming almost immediately after I got diagnosed, has maybe given me more time to contemplate that, but maybe not. I don’t know. It was a weird combination of adjacent events. 

I think the greatest benefit that has come out of the whole diagnostic process has actually been the whole process of coming to terms with the negative feelings that I have had about it. There’ve been very few things in my life that have made me feel ashamed or that I feel like I need to hide from people. And I’ve thought about those feelings a lot, why I have them, if they’re a bad.

The stigma of the autism diagnosis hit me hard at first. And I think I might’ve been especially sensitive to that because, growing up, I witnessed how other people responded to my mom who’s type two bipolar, and people can be really cruel. And she faced a lot of discrimination because of her mental illness. And I know autism isn’t considered mental illness per se, but the stigma feels similar. I was really concerned that people would treat me differently if they learned I was autistic. Even if that stemmed from a lack of understanding of what autism was, and that was intimidating. 

And in a different vein, I’ve also had very much this, ‘I can do anything I set my mind to,’ attitude. And I think when I first got diagnosed, it seemed like being autistic conflicted with that can-do-ness. But I don’t really think it does anymore. If anything, having self-awareness to understand your challenges only makes you more capable. 

And yeah, I felt very uncomfortable initially publishing that article saying that I had prejudice, because I knew that wasn’t a good thing, and I didn’t want any internet hate about it, but I think some of it was just getting comfortable with being uncomfortable. Realizing that the label “autism,” it’s not as bad a thing as I initially made it out to be, after I sat with that for a while. 

I initially thought the label would be bad because I expected people to assume that I have more difficulties than I do or that people would judge me and treat me differently than they otherwise would. I realized that, if those things happened, that didn’t make the label bad, it just makes uninformed people uninformed.

You write about how you fear that accepting the autistic label might impact your behavior (since labels are both descriptive and prescriptive). You say you’re worried about not being able to discern between “behavioral changes resulting from self-acceptance or conforming to my new role,” Are there any steps people could take to assess whether they are changing behavior as a result of self-acceptance or conforming to a new role? Do you have any current measures for this or advice in this area given the journey you’ve been on/are going through?

Yeah. A bit. I think that’s a really good question. It’s interesting and not something you can ever really discern objectively, I don’t think, but my best advice would be to develop self-awareness so that you have a better sense of what does feel authentic to you. 

Personally, I find it hard to understand my own motivation if I’m too caught up in doing a project or when I’ve been so busy it feels like I’m running on autopilot and I’m doing what I feel like I ought to be doing more than what I want to be doing. 

I try to occasionally make time to just lay in silence and get a little bit bored, and that’s when I find it easiest to discern what I really want to do. Shut out excess noise. 

I’ve actually published an article a couple of months after the article you’re quoting, called What is Authenticity, And How Does It Change With Age? It was actually one of my favorite pieces I’ve written, and it’s a little different than the ones you’re quoting. I had a little more fun with it. I talk about how I think it’s a good idea to experiment with different behaviors because sometimes you don’t know if something feels right until you try it. Like how I recently chose to move out of the Bay Area because I tried living there and it just wasn’t for me. And that was really hard to figure out until I just did it. And sometimes knowing what you don’t like is really valuable. Sometimes you just have to experiment.

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