Autism Interview #165: Michele Truty on Late Diagnosis and Autistic Identity

Michele Truty is a vegan writer from Chicago recently awakening to her Autistic identity as an adult. She has worked in book and magazine publishing for a variety of different companies across the U.S. Michele documents her discoveries and shares insights about autism in women on her blog Delightfully Quirky. This week she shared her experience pursuing a formal diagnosis and the desire for proper supports for Autistic children and their families.

You mentioned you have self-diagnosed as Autistic and are awaiting a formal diagnosis, correct? As a member of some of the youngest in the “Lost Girls generation,” what advice do you have for other women your age who are considering seeking an autism diagnosis? Is there anything about the process, based on your experience so far, they should understand or consider?

Right, I’ve been on a waiting list for just over six months now. I could probably find another center to go through the assessment process with, but it’s important for me to do this once and feel confident in the assessment and subsequent advice. I’ve heard too many…not horror stories, really, but unfortunate and disappointing wastes of time and money. For all the energy and emotion it takes to reach the point where you make that call, no thanks. Sometimes I let the frustration get to me, but ultimately I feel good about the way I’m doing this and would suggest the same: Find a doctor who has experience specifically with adult women and then research while you wait. 

Lots of autistic and otherwise neurodivergent women and nonbinary adults are telling their stories, which helps the professionals as well as the rest of us, and the field seems to be changing quickly, but not fast enough. I mean, I’m in Chicago, and I still had a hard time figuring out who to call for an assessment. A friend of mine was referred to a clinic by her GP, and she received an ADHD diagnosis. She had a great experience, so I called to make an appointment. When I asked if they had experience assessing adult autistic women, I got a “Hold on, I’ll ask.” That’s not great. You should know. So I was ready to write them off even before I was left on hold, listening to horribly frenetic music that nobody with sensory issues (or taste in music) should be subjected to. 

And if you’re lucky enough to have someone who knew you as a child, call them now. I’m so grateful that my mother is able and willing to share the behavioral patterns that I don’t remember. It allows me to look at those child models, to see at least some pre-masking traits I exhibited. While of course she didn’t know these were autistic traits at the time, she remembers all the ways I wasn’t like the other little girls. 

You’ve written about your hesitation to research the possibility of your own diagnosis, saying “I didn’t want to belittle others’ struggles by thinking that I deserved to put a label on my own struggles.” I hear this a lot from other adults who eventually obtain a diagnosis (or self-diagnose). What made you change your mind about that hesitation or what gave you more confidence in your curiosity? Did you find a particular resource that resonated with you?

Honestly, I just couldn’t deny it anymore. After kinda sorta relating to one too many characters on TV, it was hard to type out that first search term in Google, but once I did, every blog, every book, every video just enforced (and continues to enforce) my suspicion. It took a few months of hard work to realize that the traits that I’ve joked about my whole life all added up to an actual connected condition. And so many “Ohhhh, that’s why…” moments.

What have helped me be more comfortable and confident with this self-diagnosis while I wait for my official assessment (which I still want to do) are the #actuallyautistic content creators out there. YouTube serves up so much advice from autistic women—after watching some videos from invisible i and Yo Samdy Sam, I ran to my partner so excited. “They sound like me!” I could relate to them. It was pretty wonderful. Podcasts like Spectrumly Speaking have been great, too, and of course blogs and books help me fill in the gaps.

You’ve written about your “socially acceptable obsessions” growing up and how they didn’t make you stand out as much as other “obsessions” might have. Has this carried over into adulthood for you? In other words, what are you most passionate about now, and how is your current environment suited or ill-suited for this?

For most of my adult life, I’ve turned to the news. Especially with the dawn of the internet, there’s so much out there to soak up, and nobody criticizes you for knowing too much about world events. (Or maybe they do and I just fail to pick up on it, sigh.) It does more than keep my mind busy and give me something to talk to people about; it lays down patterns, gives me insight to motivation and belief systems. It helps me understand humans, the ridiculous creatures we are. 

Also, I’ve been able to find jobs or volunteer positions that allow me to dive into areas of interest. For instance, for a few years I was a book buyer for Tower Records, so I had a reason and endless resources to absorb the whole of literary history and read pretty much nonstop. That led me to go back to school and finish my English degree, which led me to start working in book publishing and then magazine publishing and then finally start editing and writing on my own. And now, working for a vegan company and starting an animal-benefitting nonprofit record label serve as both motivation and outlets for my interest in animal rights (and also music). 

You’ve written that the pressure to mask combined with a lack of understanding of how to support specific strengths and weaknesses can lead to exhaustion, damage mental health, and even lead to suicide. What kinds of specific supports (or behaviors) do you wish were in place when you were in elementary/middle/high school (either at home or in the school) that might have helped you?

Oh man, do I hope that fewer kids have to go through what I (and countless others) did. And that fewer parents have to go through what my parents did. 

Since we had no idea what made me the way I was, my parents just had this serious, sensitive kid who loved math, had zero interest in playing with dolls, and could not handle birthday parties or sleep. When teachers suggested having me skip grades, my parents said no for two reasons: First, there was no way I was emotionally mature enough, and second, they wanted to allow me to be a normal kid. And then that was it; there were no other options at the time. I got to do some special things, like skip math tests and go do puzzles in the library and tutor other students. But since I wasn’t a “problem kid,” everyone left me alone. 

Of course now we know that I was masking to fit in, and I had been pretty good at blending in before puberty—then things like flirting and cliques and pop culture all hit at once. Without knowing it, I was working so hard to keep up. I really didn’t know that I was struggling, so I didn’t know to ask for help. By 14, I hit a wall, and it got ugly. A suicide attempt made me reset my entire self. I had to rebuild, which I’m really proud of myself for being able to do, but I shouldn’t have had to. 

I wish my parents had access to even the concept of “autistic child.” I don’t know how they would have done things differently, but they could at least have some understanding of why I was the way I was. I’m sure I was exhausting. I wish there had been books for and about kids like me. I wish schools had counselors who could have spotted me—I think my school counselor was mostly there to deal with kids whose parents were going through divorce. And if all that failed and I still wound up in the adolescent psych unit after trying to kill myself, I wish at least one of the psychiatrists, psychologists, or counselors could have helped me figure out more than how to manipulate authority figures. I needed someone to help me understand the world beyond the facts. I could gather all the whats, but the hows and whys were so much work. 

In what ways do you feel pressured to mask as an adult? 

I don’t know that I know enough to feel pressure from others. I know that I still do it, sure, in moderating my finger tapping, dressing just right for special occasions (beyond just cleanin’ up good), using different speech patterns or holding my face in the “pleasant” position… But since my teen years, I’ve embraced my weirdness. I’m a trousers and t-shirts guy. I’ve had orange or pink hair for the better part of thirty years. I’m fairly blunt and open about my opinions when I’m comfortable enough to talk to you. Not everyone likes me, but even most of those people see my worth. And if not, that’s cool, I’ve already moved on. 

Has disclosing neurodivergence at work been a positive, negative, or neutral experience for you in your current job or past jobs?

Discovering this for myself during the pandemic, I haven’t had a chance to experience a difference in work situation. My bosses and some coworkers know, since they’re my friends or at least I’m comfortable enough to talk about it with them. We have an open, safe environment where people talk about struggles, ongoing personal work, being in therapy—it’s like nothing I’ve experienced before. Perhaps it’s due to the pandemic that we’ve opened up even more, to support one another in this objectively difficult period. 

I haven’t officially disclosed to HR or requested any sort of accommodation, but I don’t think it would be a negative. It’s important for an employer to know what challenges their people are bringing to the job. I’ve always been open about the things I’m not comfortable with or when I really need a day off because I’ve overtaxed myself. They know about things like my migraines, the severe medication for my RA, my sources of anxiety, and my absolute disdain for fluorescent lights. Luckily, we’re all able to work around that so I’m able to use my skills to forward our shared goals. 

What do you enjoy most about your current work in the vegan market?

I’ve been vegan for 15 years now and have spent most of that volunteering…sometimes giving time and energy I didn’t have. This job allows me to be part of the cause and still pay the rent. Upton’s Naturals is a small company, so my job is varied, but mostly I do project coordination (packaging, product development, that sort of thing). The work is indirect to the cause, compared with marketing or sales (I’m horrible at those), but the important part is that we are an independent, ethically vegan company. We are clear in our mission to decrease the suffering of animals, human or not. So even on really tough days, I remember that if we do our jobs right, that makes it easier for someone to not eat a pig or chicken. It also means I work with a bunch of passionate—and compassionate—people. That helps. 

Is there anything else you’d like to add that I didn’t ask?

What I’m doing now, in examining every aspect of my life through this new lens, is mostly just a cocktail of excitement and relief. And while I’m not resentful of my upbringing, I wouldn’t wish it on anyone. I survived, obviously, and turned out OK—I like who I am—but I feel like I’ve developed a strength or callus that shouldn’t have been necessary. I don’t think I feel connection with other people the way most people do, and I’m not sure how or if that’s related to my autism or my response to autism. If we’d known more from the beginning, would my emotional development have been different and would I be more open and connected to others? Probably won’t figure that out in my lifetime, but I might as well try. Figuring out my brain is my new hobby. 

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