A cry for connection
Being diagnosed with autism at age 31 turned my world upside down.
Here’s the deal: I’m terrified. I’m mortified of being disagreed with or even speaking when I know a second person is listening. I’m also anxious I will overthink everything I put out on the internet. See how meta that is? I’m not doing the overthinking yet; I’m worrying about my future overthinking.
Here’s the rest of the deal: I want to share my story. Being diagnosed with autism at age 31 changed my entire worldview, yet was also a warm hug. I had this new voice in my ear saying, I’m the reason you’ve never known what to say around these people, you’re not just being stubborn. That time you made a spreadsheet looking for a formula for making friends? That was also me. I know I’m not the first to share this experience. This is me telling myself that’s okay.
A way-too-early aside: has anyone else noticed that ALL of the Asperger’s memoirs published are from the UK? And MOST of the Google results are from the NHS? Please catch up, America. Fund more public institutions and reduce the stigma around mental health.
This is my cry for help, for connection, for understanding. Those of you out there nodding along, you are not alone!
What does my day-to-day look like, you may be wondering? I sat at my desk at work unable to move for hours last week after someone asked to call me. My lunch time came and went. I still haven’t gotten back to that person. Another time it took me 45 minutes to put my headphones on shortly after I got news my support system at work was weakening. [I call this catatonia or immobilization.] I read Google and Reddit and ChatGPT from cover to cover in the last few years looking for someone else to talk about the brain buzz I have experienced for years. [I eventually learned to call this emotional dysregulation (which spell checkers do not recognize), then the freeze response (the lesser-known cousin of Fight or Flight), then finally autistic burnout (kind of like burnout but for people who don’t work in Big Tech).] How can I tell my doctor or my employer what’s wrong when I barely have words for it myself? If you relate to this, I wish I knew how to get this into your hands right now.
From Scratch Dot Org is the non-profit arm of another project I have in the works. I hope to explain more in the coming months. And by non-profit, I do not mean that this is a registered 501c3 or 501c4. We are free to lobby AND we’re not accountable to shareholders!
I know this is raw. That’s the only way I will get the words out of my head. The only way I can share my story is by acknowledging my fear of those who disagree for the sake of disagreement. This is my story, and it's unique to me. If you're here for genuine connection and understanding, we’re on the same page. If you're more motivated by status, we might not resonate with each other.
Here’s what I am committing to here:
Share my experience as an adult diagnosed with Autism Spectrum Disorder Level 1 at age 31 in the United States.
Espouse the values of acceptance, kindness, humor, and hope.
Do so in the most authentic way possible and in the way that weighs on me the least.
Do-eth the aforementioned items twice monthly.
If I find I am no longer able to do this, I will shut down this newsletter. But I’m going to try because what I say matters. If this resonates with you, your voice matters too. If it doesn’t, that's okay—we each have our own paths to follow.
Please reach out if you are struggling. You are not alone.
Disclaimer: AI tools provided emotional support during the writing of this post.
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It’s not therapy or coaching. It’s just real talk.
New: Lake-Effect Coffee
My novella is out! Lake-Effect Coffee is a workplace satire about burnout, friendship, and starting over with a coffee van. If you’ve enjoyed these essays, I think you’ll love it.
Hello from another autistic on here, though I came to the diagnosis and had my world turned upside down a little sooner, in my early twenties. It feels incredible to have an explanation for a lifetime's worth of questions.
"How can I tell my doctor or my employer what’s wrong when I barely have words for it myself?" - Wow. Just wow. With writing & self-awareness like that I think you'll do just fine on Substack! It's full of people like us :)