The shame and anxiety of living undiagnosed
You’re late to work again. Shouldn’t have stayed up until 4 AM working on your project, but time got away from you. It always does. You’ll lose some PTO for this, but it’s better than getting written up. Your boss is tired of it, so you rush to your desk hoping they didn’t notice. You’ve been down this road before… It leads to a short conversation before you pack up your things.
The job sucks and you’re always anxious. At least the pay comes close to barely making ends meet. You can’t help but feel shame as you get older while your coworkers remain the same age. You showed promise in school, but never lived up to it. “Gifted,” my ass.
For the undiagnosed, life is a series of blue shells on a Mario Kart track. Anxiety and self-doubt are constant companions. Our outward symptoms are misdiagnosed while the underlying causes remain unseen. Discrimination around queerness, along with unemployment, addiction, and incarceration, drag us into cycles of poverty we can’t escape.
We’re told our wasted potential is our fault, leading to higher rates of PTSD, eating disorders, anxiety, depression, and suicidal thoughts. Life has us burnt out and don’t know why.
It’s estimated that about 15% of the population is running with a Linux brain instead of Windows. In the US, only 7% have been diagnosed with ADHD and a mere 2% have an official autism diagnosis. Millions suffer without ever realizing why they’re different.
Lefties will tell you it’s frustrating living in a right-handed world, but we adapt. There are workarounds, but it’s harder to find solutions when the answer isn’t as easy as noticing which hand a baby prefers. Our family’s “normal” might feel familiar to us, but look alien to our neighbors.
Prefer to listen?
Neuroqueer: At the Intersection of Neurodivergence and Queerness – Amy Says Things
Self-discovery (and diagnosis) through your TikTok For You Page
You don’t have the bandwidth for long videos, so you’re mindlessly scrolling through Shorts. Now that you’ve got a decent buzz, you don’t care about nagging pain and distracting noises. A handsome Black man in blue scrubs talks about signs of autism in low-support individuals and something clicks. Something inside you wakes up as you re-watch the video and make connections. Your feed offers you other videos: short “put a finger down” tests that you crush, life experiences, and neurodivergent life hacks. For the first time in your life, you feel seen, and your childhood suddenly makes sense.
“Am I… neurodivergent?”
Labels are powerful, so when social media gives us one, it’s hard to ignore. We end up jumping down a rabbit hole to understand ourselves better, but it doesn’t always lead to the truth.
30% of people under 30 believe they are neurodivergent, which is higher than the actual estimated numbers. Short form videos, listicles, and quizzes are a mixture of genuine neurodivergent symptoms and common experiences warped in a funhouse mirror where we see what we want to.
When curiosity meets hyperfocus, we lose hours (well, days) digging for answers. When we come up for air, we’ve built a detective wall with more questions than answers, screaming “Bigfoot conspiracy.” It’s Schrodinger’s Diagnosis at its finest.
Sure, our kid, niece, or nephew was diagnosed and doctors mentioned it’s genetic, but that doesn’t mean anything…
Right?
Or should we get offline and touch grass?
Misled by algorithms, Dr. Google, and our AI “therapist”
You scroll for hours, finding more content from neurodivergent creators. Your experiences are similar, but you’re not sure. All of your favorite creators seem to have ADHD, and a few admit they’re autistic. Is that a sign? You search Google for answers and strike up a conversation with AI. All the evidence seems to point to the same answer. You are definitely neurodivergent and show signs of high masking skills, but is it autism? ADHD? Both? Or are you making this up?
Algorithms are good at figuring out what we’re interested in, but it doesn’t care if the content is realistic or truthful. 15-60 seconds is barely enough time to get a simple idea across, let alone a complex one. In an ideal world, media literacy would help us separate facts from nonsense, but we’re terrible at it.
Entertainment is king. Algorithms push engagement– and rage-bait to us more than thoughtful, well-researched pieces. Short- and long-form videos give an illusion of truth, and we mistake our wading in the shallows for a deep dive into a topic. It’s easy for a creator to lie if they say it with conviction, and we keep falling for it because it feels right.
AI does this on steroids. Your favorite chatbot posing as a diagnostician isn’t accurate, it gaslights you by nodding along. Its false confidence fuels our hopes and fears, twisting them into heroes and monsters while steering us away from reality.
Even search engines lead us astray. The way we phrase questions changes our results. Our bias is baked into the query, giving us the answer we already had in mind… ask anyone who believes the earth is flat who “did their research”. Technology pulls us in by telling how good looking and smart we are (and hey, you’ve got a nice butt). It wasn’t designed to tell you the truth.
Medical professionals are understandably frustrated by this. Their expertise means nothing in the face of the “evidence” we uncovered in our shallow deep dive. In a perfect world, we’d see a doctor first for a medical diagnosis…
But the world is messy and broken.
Why so many people don’t (and can’t) get an autism or ADHD diagnosis
You start letting your leg bounce when you’re working on something, breaking the rule you learned in middle school. It feels good, and it actually helps you concentrate. You look into fidget toys and other ways to keep your hands busy and mind on task. As you delve into the experiences of those with ADHD and autism, you know you should talk to a doctor.
Trouble is, your PTO is just about gone and you work when your GP is open. Taking time off means you don’t get paid, and missing a half day or more of work means you won’t have enough for bills, not to mention the hassle of asking for time off. What if you’re wrong? Sure, you’ve run your symptoms by the DSM-5 and your online test results show a clear pattern, but are you answering it “correctly” because you figured out what the intended answer is?
I may as well lay my own cards on the table. I have an ADHD diagnosis from a professional, but not one for autism. She noted autistic symptoms, but we didn’t take it further. There are lots of reasons I think I’m autistic: family, childhood, symptoms, and masking all point to it. Maybe I’ll get an official diagnosis, but it won’t stop me from making accommodations that help.
Let me be clear: If you think you might have a medical or psychiatric condition, you should see a licensed professional. The internet may be our first stop, but it should never be the last.
Unfortunately, most people don’t seek advice from a professional.
For neurodivergent people in the US, our un- or under-employment is a major factor. Without access to affordable healthcare, we’re stuck.
If we see our doctor, they refer us to a specialist, as they should. This means more waiting, hoping they’re affordable and within our network, and testing. If we don’t live in or near a large city, specialists can be hours away. It’s a long, expensive, and time-consuming process. Is it worth the hassle?
Countries with more robust healthcare systems, like England, face different barriers. Wait times for specialists can be years long, and paying for it can cost upwards of £800 ($1,084). If you’re in a low-wage job due to a criminal record, substance use disorder, severe depression, or disability from a chronic illness, it’s out of reach, too.
Anxiety is common among neurodivergent people… who would have thought that constantly monitoring our behavior so that we appear neurotypical would be bad for your mental health? Social struggles are already a hassle and a half, and worrying about being called a hypochondriac or drug-seeker makes it worse.
Autism and ADHD were seen as (white) boys’ problems until recently. There are lots of clinicians who still hold this belief, leaving adults, minorities , women, and girls behind. And if we’re smart enough to be labeled gifted or learned how to mask our symptoms early on, we pass under the radar. ADHD plus autism is surprisingly common, but it gets missed when Autistic rigidity is tempered by ADHD impulsivity.
An official diagnosis is bittersweet. I’m relieved to have a name and sad I carry a label. It’s not the first time I’ve been down this road, but it took time to come to terms with it.
There is hope. Telehealth visits make it easier to see doctors. We can bypass our social anxiety and remain in a safe place while we deal with our fear of people in white coats. Healthcare should be accessible to everyone, and using technology within the system is an important step towards that goal.
As we understand the lifetime impacts of undiagnosed neurodivergence, we are seeing more adulthood diagnosis, particularly inattentive ADHD. Studies are broadening to see how race, ethnicity, and gender play a role in how symptoms show up, helping everyone get earlier diagnoses. Online communities bring acceptance, support, and help. As awareness grows, it’s less stigmatized. Social media shines as neurodivergent creators share their lives online and raise awareness..
Building community and validating self-diagnosis without losing accountability
You keep looking for ways to get a medical diagnosis, but for the first time in your life, you’ve found others like you. Dipping your toes into the waters of online communities brings a sense of peace. It’s freeing, even if they’ll never see you in person. Someday you’ll get an official diagnosis, but for now, you’ve given yourself permission to find solutions to sensory problems that plague you: headphones, earplugs, stim toys, weighted blankets, and vitamins to supplement your restricted diet. Life is brighter than it’s been in a very long time.
Online spaces agree: Get a medical diagnosis if you can. But given the significant barriers we face when it comes to getting one, self-diagnosis is valid. Sure, we may have been bamboozled by our feed, but if we like to problem-solve with a stim toy in hand, what’s the harm?
Self-diagnosis comes with responsibility, though. Anyone using a psychiatric disorder as an excuse for bad behavior is avoiding accountability. (Seriously, Kanye? “Ooops, all autistic” is BS. Do better.) Even if we miss social cues or come off in a way we didn’t mean to, we should own our mistakes and learn from them. We have to make changes so that we’re a better parent, partner, and friend to those around us instead of blaming all of our problems on neurodivergence.
Regardless of whether or not we’re “official”, we finally have the tools in hand to get the support we need. So use them, diagnosis be damned, and make your life better.
Next time, we’re going to tackle a strange phenomenon among Queer people: nearly half are neurodivergent. Why?
Do you have an official or self-diagnosis?. What tools or strategies work for you? Comment below, I’d love to hear your story.
Think you might be a Burnt Out Formerly Gifted and Talented Kid? Try my burnout tracker. It’s free and will help you spot patterns to help you heal.
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Amy Writes Things 