I’VE YET TO REACH THRIVING, BUT I’M SURE WORKING ON IT.
Next month will be two years since I was diagnosed with autism at 37 years old. I’d spent the prior three months going through the self-diagnosis process, every night I was plagued with the truth of experiences I’d reframed with delusional optimism, lied to myself about, or full-out repressed altogether. They haunted me all night long, smashing into my mind with heartbreaking clarity:
They weren’t really laughing with me. That’s what they meant by “you’re…funny,” without a smile. When they said I was brave for doing things that seemed normal to me, it was probably because they knew I’d get made fun of for it. Accepting the struggles at work and school where people accused me of not trying, there were real — physiological — reasons for it, but feeling powerless because I can’t redo my life and choose a more realistic and sustainable path for my neurological needs, and now my brain’s been run into the ground.
Daytimes were better though. I’d cry through meditation most mornings, shaking off the night, but by the end of my mandatory wellness stuffs that help lower fibromyalgia pain, I was amped to get back into learning about my brain, talking to other autistic people about our brains and brain issues, and starting to write about the things I’d learned.
It felt wonderful to finally know I wasn’t just someone who sucked at being human, I’m actually just of a different neurotype — my brain and nervous system have different needs, and I needed to start taking them seriously.
But the thing is, I don’t live in a society that’s allowed me to do so.
The matter of how to pay for one’s life is a huge problem in the autistic community, with nearly 80% of us unemployed. I was able to semi-skate by in my 20s, somehow graduating from college and getting an office job around the time my student loans became due. But the jobs never lasted, sometimes due to the economy and sometimes because of me, struggling to the point of autistic burnout and/or fibromyalgia flares (which I thought were a weirdly frequent flu) so having to quit or being let go.
There was so much needless brain drainage in Office-world. In order to be taken seriously, I had to sit straight with my feet on the ground (gah! musthavelegsup!), I couldn’t defend myself from the brutal 60* AC with a blanket, had to wear uncomfortable clothing, sit under painful fluorescent lights, and try to focus on menial tasks despite someone eating freakin’ microwaved fish in the next cubicle, someone else playing pop music just loud enough for me to hear, and the constant chatter of small talk betwixt the cubes.
And don’t even think of wearing headphones. Those are anti-social.
But it was much better than retail and service, where the audio cacophony was even worse and there was soooo much more talking about nothing — plus, numbers mix up in my head, I have very little working memory, and I confuse faces and names! (I tried bartending and trying to keep track of whose tab was whose nearly sent me into tears. Cocktail waitressing was also a nightmare.) Those experiences are probably what pushed me to finish college, the hope of a less draining way to earn.*
* These are my particular autistic struggles, other autists with different spiky skill sets are probably fabulous at these things.
Anyways, a job loss in 2020 is what sent my negative autistic traits so high that I finally had to accept that being a Highly Sensitive Person definitely didn’t cover this shit.
The publication I was writing for lost an investor due to COVID, which at least meant that I qualified for unemployment despite technically being a freelancer. But that process was a maddening struggle (it was like 5 months to get the first payment) and all of my neighbors seemed to have lost work too, everyone in my crowded block was suddenly home all the time, often playing music at “fuck this shit” levels.
Sensory sensitivities skyrocketed and meltdowns became regular, sending me into desperation for answers that led to my autism revelations, then Level 2 diagnosis on August 10th, 2020. (Self-diagnosis is totally acceptable in the community, but I felt desperate for proof and was lucky to get an affordable-ish referral.) It was a bittersweet confirmation, a long list of what are essentially faults in our society, things I’d tried to hide my whole life. My assessor was shocked I’d gone so long without a diagnosis, which makes me wonder if I ever did pass as “normal,” or if people found me to be “off” all along.
But it was also incredibly validating. I’m not “off,” I am autistic and have millions of neurokin! And with clinical reasons for why I am the way I am, I hoped for more understanding and real connection in longstanding relationships once I told people the news. Instead, coming out as autistic largely brought the opposite. While there were some wonderfully accepting people, it was also a time when I finally got it into my head that people I thought I was close to for decades, family even, weren’t ever going to see me as one of them. They’d given up on me, full-stop.
The personal rejection combined with online bullying, continued auditory harassment, and old-fashioned “make the naive person do cringe shit just because she will” teasing led to a complete mental breakdown later that month. Burnout got worse after that. I’d have encouraging months where I felt like I was coming out of it, but in early 2021 I started experiencing nonverbal days, sometimes my brain was too exhausted to even think. When it was really bad I felt like I was getting sucked into myself and might not come back. It was terrifying.
I had a few encouraging months, but stress and trauma overwhelmed me again I had one more mental break last summer, which was absolutely soul-crushing and left me with a head injury that busted a hole into my wall. After that, my functionality was worse than it’d ever been, I couldn’t even make simple phone calls or figure out my Roku.
I thank the Universes that unemployment benefits, COVID rental relief funds, and the generosity of friends and strangers helped me get through the worst of times. Finally accepting that I’d lost people from my life over the last couple of years seemed to give me the room to open up to more supportive people I didn’t know all that well, just a couple of friends (three now, two long-distance) — but the routine connection and emotional support have helped more than all the therapists I’ve seen combined.
In late 2021, I finally had enough functionality to do something besides write about autism and started applying to the plethora of work-from-home positions that’d become available since the pandemic. I thought, finally a way to work without all the needless environmental drainage! Though I’m very grateful for the freelance work I’ve gotten, it hasn’t been a stable income and I hoped for a shot at benefits, a living wage salary, and some security.
But after a few months and so many cover letters I’ve literally cried about it (many times), I realized the proverbial fish weren’t biting so decided to examine my online presence. I’d spent years freelance writing through the stressful process of trying to get disability benefits, and I put out some very emotionally raw work, as well as writing all about my autistic experiences here with my full name — it’s work that I’m proud of, work that I know helped people because they took the time to tell me so. But, as a friend gently reminded me, that stuff can also scare employers off.
I knew they were right, and I felt silly for not realizing sooner, but as I took down and/or anonymized my work I felt like I was erasing the person I’d finally allowed myself to grow into. It was an emotional thing for me. The need for security is real though. I don’t have support (disability paid ~2 of the 7 years I’ve been homebound ill, and most of it went to debt), so I need to pay to live somehow. You gotta do what you gotta do.
Unfortunately, after greying out my internet presence, I only hooked one fish and it got loose after the second round in the hiring process. A while later I did wind up with a freelance gig, ironically at an organization that serves disabled kiddos, referred by someone who knew I’m autistic.
I was so excited but it wasn’t at all what I thought it would be and quickly turned into a communication disaster. I’m used to freelance content writing being like, “here’s the title, keywords, and word rate — go for it!” but this was completely different, it was like filling out a form, something that makes my brain go berserker. Very little analytical thinking, lots of filling in blanks, following directions, endless emails, and interviewing people with questions I didn’t get to write.
It was very typical of my office experiences, sans the smelly lunches, and I failed miserably; everything that must be time-saving for their other writers only added to mine, and asking for clarification led to my supervisor seeming to think I was needy, so I asked less, and eventually they took the essays before I could even finish them — two hours from completion to me, I’d finally gotten to the easy part (writing!) but I imagine finishing must have taken them much longer. It seemed ridiculous, more so after I got an email that contradicted every reassurance I’d been offered when expressing concerns in Zoom meetings. It felt like I was thrown under the bus before I even got where I was going.
In a way, I’m glad that it wasn’t a normal freelance gig because I needed to (re)learn that limit — traditional work situations just don’t work for me, even from home, and especially not now. Still, I’ve been floundering since. When I started the gig I was definitely still in burnout, far from the bushy-tailed optimistic finally-feeling-like-me-again person I was when I started my job hunt, but I was hanging in there okay.
Since then, not so much.
I’m struggling with my brain functionality, in the literal dark most of the time due to sensory issues — and now it’s been two years of autistic burnout. Is this my life now? Am I ever going to get better? At least better enough to pay for life and like maybe go to lunch with a friend on occasion?
And I still feel all greyed-out, both internally and in my online expression. Those articles and accounts are still gone or anon’d, and I’m not sure I should put my name back on them. People aren’t as good, kind, and open-minded as I presumed. At large, it seems we’re kind of horrible. My naivety remains cruelly intact, but I’ve turned into a cynic at the same time and I don’t know what to do with myself.
The times I feel strongest and most hopeful are when I decide that advocacy writing for autism acceptance, chronic illness awareness, and social change are my best shot. I’ve always had a book in me and started writing it seven years ago, besides a handful of not-good pitches and my last article here, it’s been about all I can work on lately; executive malfunction’s been intense, my brain’s like “special interest or nap, bitch, I’m just too fucking tired.”
Oh, but my mind. (It’s a strange thing to have your neurology disagree with your mind, but as a reader of ArtfullyAutistic, you’re probably all too familiar with the conundrum.) My mind says advocacy pays dookie and isolates you from societal acceptance/success, but maybe that’s just what it’s been conditioned to think. And if it were true, maybe changing times means it’s not anymore. I have found several literary agents specifically seeking neurodivergent writers, so that helps modulate Cynic Mind a bit.
Plus, I’ve been trying to squeeze myself into the norm for decades to utter failure and complete body-mind-spirit breakdown. I’m tired of throwing myself against that wall, it’s fucking broken me and I can’t break much more without shattering completely.
Writing this has helped, but I still don’t have a clear plan for what to do. I do need to start “coloring myself back in” so to speak. Looking back at old writing and social media posts, even ones where I was homeless, there was a sparkle to my words and in my eyes. I’m not sure where it’s gone, or if it will come back. I know it had to do with hope though.
I’ve just got to take it day by day. Hard thing by hard thing. Small joy by small joy.
And, eventually, I’ll find that sparkle again and get back to writing in a more “let’s take on the world!” fashion — but for now, there’s my painfully honest take on my first two years of autistic self-knowledge.
I’m broken, really broken. But I don’t wish to shatter.
Meg Hartley 