Tales of a late diagnosed autistic.

As part of Autism Education Month, I thought I’d share my story about autism discovery. I also have a story about autistic burnout, but that’s for another post. Share your own discovery story in the comments if you’re comfortable doing so!

Autistics do not always show emotion the way neurotypicals do, but believe it or not, I’m having a blast here.

Sometime around junior high in the early 1990s, I came across a book (horribly) titled There’s a Boy in Here. It was written by an autistic man and his mother and it recounted their experiences as he was growing up. (I am definitely not recommending the book because, although I haven’t read it in more than 30 years, what I remember of it was problematic in how autism itself was seen.)

It was the first time I had read about the autistic perspective from a person who was actually autistic (prior to that my autism education was Rain Man and Kristy and the Secret of Susan, a Baby-Sitter’s Club book). And I related to this man’s description of autism enough that I brought up the subject to my mom who gave me the classic line: “Oh everyone’s a little bit autistic.” Not wanting to claim an identity I had no right to, I dropped the subject for three decades.

But then, you know how it goes: I started seeing more and more memes about being neurodivergent and I related to them, hard. I don’t mean I saw them and chuckled cause it was kinda relatable. I mean, at times I’d be sobbing because I was being seen in a way I’d never previously been validated for. I mean that these memes literally described the ways my brain and body operate and offered solutions and understandings that were immediately helpful in my daily life.

Whoops! I just self-diagnosed!

(I’m kidding - self-diagnosis is actually absolutely valid for autistics and I’ll be writing more about that in an upcoming post.)

But the point is that I’m not alone. A lot of people are discovering their neurodivergence right now as adults. Sometimes called the Lost Generation because autism was understood much more narrowly in previous decades so many of us went undiagnosed and therefore unsupported throughout our schooling and formative years and this was a particular kind of trauma we are now working to heal from. (This is not to say that those who did receive diagnoses made it through without any trauma!)

I was reading by three years old and my mom liked to brag about how when I started kindergarten my teacher had to stop me somewhere in the 70s because she’d asked me to count as high as I could, expecting me to maybe get above ten. I remember really excelling at patterns in kindergarten and my teacher commenting on that. In first grade I started having real trouble making friends and knowing what my peers expected of me. By second grade, my teachers were beginning to get frustrated with me for “daydreaming” (I also have ADHD). In third grade, it was decided that I was “gifted” and so I was put into the GATE program at my elementary school. In fourth grade I really started struggling in school. Math became difficult and confusing for me and I earned my first failing grades. During an assignment once, my teacher pointed out how all of the GATE students in the class were already finished. I don’t know what she was thinking when saying that because it can’t have felt good to the kids who weren’t GATE, but for me, a GATE kid still far from finished, I was filled with a particular kind of shame. I began to internalize the idea that I was highly intelligent, but a general piece of shit incapable of “trying hard enough” or “applying myself,” like my teachers all seemed to think.

By the time I was in high school, I had a deep confidence that any idea of me going to college was a sham, but I didn’t know what else to do so I just went through the motions at the junior college, loosely, sloppily, sometimes not even finishing a semester in a class, earning more failing grades until I eventually gave up the ruse entirely and dropped out.

Sometimes I think a person has to disassemble themselves, one piece at a time, to figure out how they work. I’ve done this a few times in my life to varying degrees - sometimes rather catastrophically - and each time I put myself back together, I’m able to do it in a way that serves me better. My 20s and 30s were comparatively quiet and slow. I had babies and I reparented myself while raising them. I was able to shape my life to my capabilities and desires for the first time and I thrived. I cooked everything from scratch, as healthy as I could afford. I knit. I homeschooled the kids. I led a Campfire Club. I learned new and better interpersonal skills, and I learned how to value myself more. I began learning how to accept imperfections, but as it turns out, I’d have more work to do on that later. On the whole I was comparatively functional even though I felt like I was floundering all the time.

By the middle of my 30s I was ready to go back to school. I knew how to plan ahead, I knew how to work with my brain for how to stay on top of things (look, a lot of ADHDers actually like the adrenaline they get from working at the end of a deadline, but I am way too old to pull all-nighters). I graduated magna cum laude, with distinction, and I hold a degree in English and a minor in Women’s Studies. Turns out I actually am capable at academics when I have the supports I need.

Yet, my college years became more hectic when one of my children became ill and needed multiple hospital stays and extra wraparound care which required me to not only make many appointments per week, but to also fight for my child’s rights in their healthcare because the system is … just terrible. So I was a single mom trying to balance both of my kids’ medical, educational, physical, and emotional health with a full time college load, schools across the county from each other, as well as fallout from an abusive family member and no support system to help me through it all. My quiet, calm, organized, routine-led life was gone and I was too exhausted to cook or clean and chaos seemed to lurk at the the fringes of my consciousness.

And then more shit happened. And it was too much and my brain broke. But I’m mostly better now, kinda. Almost.

Around this time, I figured out I’m autistic (those of us with ADHD as well call ourselves AuDHDers) and suddenly everything clicked into place. Suddenly everything made sense. I hadn’t been a lazy child who just didn’t apply herself; I had disabilities. I could manage a successful life that was slow and calm, but working full time drained me of my sanity. I hadn’t worked long enough as a young adult to really find out my limits, but I had already noticed how much better I was doing on every level when I was allowed to live at my own pace. Often autistics can only handle so much sensory input, or masking, on a daily basis before our brains literally go offline. We physiologically need more rest than neurotypicals.

In other words, when I was able to shape my life to accommodate my disability I succeeded. Weird, right? But every time I try to work as much as a neurotypical, I get physically and mentally sick.

I might not “look autistic” if you met me, but I am not “high functioning” either. Barely functioning at my best, more like.

(And we’ll also be talking about functioning labels later this month, stay tuned!)

I’m thankful every day that I discovered my autism. Not only do I have answers for all my quirks, but I know my limits and can therefore better care for my brain and body. I understand why I struggle with relationships and why I sometimes have meltdowns despite being an adult. And most of all, I’ve found my community who help to guide me lift me up, and process shit through memes.

Oh and my mom? There’s a reason she believed that “everyone’s a little autistic.” Heh.