The Unadulting Society

Thank you for this thread. 💛 I was self-diagnosed for three years before I could afford a formal assessment. Those three years of "but what if I'm just making it up" were EXHAUSTING. Something that helped me: I stopped asking "am I autistic?" and started asking "do autistic coping strategies help me?" If wearing earplugs stops my meltdowns, I don't need a doctor's permission to wear earplugs. If visual schedules help me function, I can use them regardless of diagnostic status. The label is useful, but the accommodations are useful whether or not you have the label.

self-diagnosed here. can't afford assessment, probably never will. i still belong in autistic spaces. my experiences are real. if someone tells me i need a piece of paper to prove my lived experience, that's a them problem.

I was self-suspected for about a year before my diagnosis and the imposter syndrome was SO loud. Every time I related to an autistic creator I'd think "you're just looking for attention." Every time a coping strategy worked I'd think "well maybe neurotypicals also benefit from noise cancelling headphones." Then I got diagnosed and suddenly all the same things were "real." But they were ALWAYS real. The diagnosis didn't make me autistic — it just confirmed what I already knew. You know yourself better than any diagnostician who spends 4 hours with you.

I was formally diagnosed but here's my hot take: the formal diagnosis process is flawed anyway. It's based on observation of behavior, not brain scans or blood tests. The diagnostician is making a judgement call based on how you present in a clinical setting for a few hours. If you've been researching autism for six months and every single thing you read makes your entire life make sense — you have more data than they do.

I want to add some nuance: the medical system has a long history of gatekeeping diagnoses based on race, gender, and class. When we talk about "valid" diagnosis, we need to ask: valid according to whom? A system that missed autism in women and POC for decades? A system that charges thousands of dollars for an assessment? The gatekeepers have lost their credibility. Self-knowledge, community validation, and "does the framework help me understand my life?" are all more reliable than a medical system that was never designed for us.

@jellycat_jamie THIS. the anxiety about faking is basically diagnostic criteria at this point.

the "what if i'm faking" thought IS a symptom. neurotypical people don't spend years wondering if they're secretly autistic. the fact that you're worried about faking is evidence you're not.

I'm self-suspected and this thread is making me cry. I've been lurking in ND spaces for months feeling like a fraud. "You're not diagnosed, you don't belong here, you're probably just looking for an excuse for why you're so bad at being a person." Reading everyone say that the doubt ITSELF is part of it... I feel like I can breathe a little.

Something I wish I'd understood sooner: diagnosis is a tool, not an identity. I use the framework of autism to understand myself and build a life that works for my brain. Whether a doctor agrees with my self-assessment doesn't change whether the framework is useful. Use the tools. Keep what works. You don't need permission.

i'm formally diagnosed adhd, self-diagnosed autistic. the adhd diagnosis cost $2000 and the autism assessment would cost even more. i can't afford to prove something i already know.

Thank you for this thread. 💛 I was self-diagnosed for three years before I could afford a formal assessment. Those three years of "but what if I'm just making it up" were EXHAUSTING. Something that helped me: I stopped asking "am I autistic?" and started asking "do autistic coping strategies help me?" If wearing earplugs stops my meltdowns, I don't need a doctor's permission to wear earplugs. If visual schedules help me function, I can use them regardless of diagnostic status. The label is useful, but the accommodations are useful whether or not you have the label.

self-diagnosed here. can't afford assessment, probably never will. i still belong in autistic spaces. my experiences are real. if someone tells me i need a piece of paper to prove my lived experience, that's a them problem.

I want to add some nuance: the medical system has a long history of gatekeeping diagnoses based on race, gender, and class. When we talk about "valid" diagnosis, we need to ask: valid according to whom? A system that missed autism in women and POC for decades? A system that charges thousands of dollars for an assessment? The gatekeepers have lost their credibility. Self-knowledge, community validation, and "does the framework help me understand my life?" are all more reliable than a medical system that was never designed for us.

I was formally diagnosed but here's my hot take: the formal diagnosis process is flawed anyway. It's based on observation of behavior, not brain scans or blood tests. The diagnostician is making a judgement call based on how you present in a clinical setting for a few hours. If you've been researching autism for six months and every single thing you read makes your entire life make sense — you have more data than they do.

@jellycat_jamie THIS. the anxiety about faking is basically diagnostic criteria at this point.

I'll add: some of us CAN'T get diagnosed because of career consequences. I work in a field where an autism diagnosis on my medical record could impact my professional standing. That's not paranoia — that's a real risk in certain industries. Self-diagnosis isn't a lesser option; for some people it's the SAFER option.

@crayon_cryptid You belong here. You belong in ND spaces. You're not bad at being a person — you're probably autistic in a world that wasn't built for you, and that's HARD, and you deserve community whether or not a doctor has signed a paper.

formal diagnosis is a privilege. it costs money, it requires access, it assumes you'll be believed by a stranger in an office. none of that is available to everyone. self-diagnosis isn't "less valid" — it's the only option for a lot of people.

Something I wish I'd understood sooner: diagnosis is a tool, not an identity. I use the framework of autism to understand myself and build a life that works for my brain. Whether a doctor agrees with my self-assessment doesn't change whether the framework is useful. Use the tools. Keep what works. You don't need permission.

i'm formally diagnosed adhd, self-diagnosed autistic. the adhd diagnosis cost $2000 and the autism assessment would cost even more. i can't afford to prove something i already know.

love you all. if you're reading this and you're self-diagnosed: you're real. your experiences are real. you're welcome here. anyone who tells you otherwise can take it up with me. 💛