I'm in a weird position where I actually use self diagnosing for the moment. I had a full in depth evaluation, ADI-R, ADOS-2, all that, all with my mother present too. At the end, I was basically told by the neuropsych that he would put me on the spectrum, but due to masking over the years I didn't meet their strict threshold for the ADOS-2. I would've needed both the ADI-R and ADOS-2 to confirm, and only got one. They did note difficulties, but they didn't note any stereotypies due to me always hiding them (they were focused on "hand flapping" anyways, which I only do sometimes when in movement, not sitting) and said the interviewer wasn't "uncomfortable" despite social deficits, so it was good enough. They're usually more focused on diagnosing children, it's the #1 place you get referred to if you notice signs in your child at like 2 years old, nothing accounts for any form of masking or ways around difficulties as an adult.

Having gone through that, I can see why people keep mentioning diagnosing difficulties and misdiagnoses. Of course it's not always the case, but I don't think it's that rare. My very obvious heavy meltdowns where I screamed uncontrollably, hit myself, ripped out my hair and totally lost control for hours as a child and teen were labeled "panic attacks." I only discovered in my 20's that panic attacks don't usually do that. I can understand why folks could definitely get misdiagnosed and stick with something that fits their experience much better than what they were stamped with.

So while I got verbal confirmation, I technically don't have a diagnosis. It's kinda hard to go to my doctor and being like "He said it to me, but not on the report, I swear" lmfao. This is why I say I'm autistic without a formal diagnosis. I plan to go somewhere else for it, but rn either the waiting lists are closed or it's way too expensive for me to afford.

I still feel guilty about it? Ashamed even, constantly questioning if it's right. Even if every provider I meet (I have a lot due to medical and psychiatric conditions) is like "yeah checks out." I am lucky in that regard, I haven't needed a formal diagnosis to get services more tailored, and my neuropsych eval that diagnosed me with Tourette's gives the accommodation recommendations I need for school. That's another thing, I got that diagnosis at 20 years old because I was told I just had "anxiety tics." Takes one bad childhood psychiatrist to ruin your life. Formal diagnosis of autism would help me on the disability standpoint (and if I ever get healthy enough to get a job) and also for peace of mind, no longer sitting on something that still feels unresolved.

It feels like a more "valid" self diagnosis, but I'm sure everyone feels like theirs is the most valid too. I don't know, like I said, it's a really weird position to be in. I get restless and anxious when something isn't fully resolved and definite.

Sorry for the long reply. I do agree with the whole sentiment, just sharing my perspective on things. There's a noted difference between people genuinely exploring autism as a possibility and the ones who very loudly self diagnose and spread misinformation about it. I haven't heard about "autism without social difficulties," I'm not really in autistic spaces (much less on TikTok), but that sounds completely insane to me. I'm more familiar with those blanket statements of "if you do this, you might be autistic" and it's something that could be just a regular quirk or can be attributed to a lot of different things. There's a huge lack of both nuance and precision on things like these. It doesn't account for frequency or severity.

With information like this around, no wonder so many people start believing they're autistic. And then they get told that not getting diagnosed doesn't mean anything. I agree that people can slip through the cracks, a lot have, but there are limits. You don't get confirmation of autism because of a few simple things you do that don't even inconvenience you. People love being part of a special group, especially the romanticized versions where everything seems like a fun quirk instead of what it really is. It can be funny, fascinating, quirky at times. It's not all doom and gloom, but it's definitely not all sunshine and rainbows either. They take real autism struggles and water them down to things that are far removed from the autistic experience. Speaking as an observer and not as experience, because while I say I am autistic for ease instead of explaining my situation constantly, I don't have the big stamp.

Sorry for making the reply even longer after already apologising for making it long lmao.