Autism

Well I am feeling more lost again with this post. Discovered 4 months ago Asperger Syndrom from someone that had it talking about it online and I found their words surprisingly near me. Went on a trip online curious and read about it, felt more lost because not everything written is present but a lot is there. Decided to look on Reddit. Did the Raads-r test seriously, got a 131. But papers online say it's effective but finds some false positives. So I did the Clinical Partners Adult Autism Test and the results where strongly positive. Did the recommended Aspi-Quiz, and I got a 150 on 200 for broader autism. I'll be moving very very soon and taking rendez-vous with a specialist would take too long, so I am in a grey zones. Posts like that make me feel like maybe I could get an answer, and maybe learn more about myself, even if it's a "Well no you are not, you are just simply different" or a "Here, there is a word for what you feel you are living, go learn about it". But reading comments remind me simply I'm just there floating in ignorance for now, and a bit feeling lost about how I work, or think I work

I got myself onto a waiting list in my native country to get an official diagnosis. Would have had to be paid out of pocket, plus the flight back home (adult autism diagnosis in my residential country? Never heard of such a thing, so my native country was the only place to even try). But when I first started entertaining the idea that I could be autistic it was quite the revelation for me and of course I wanted it proven and on paper!

When they finally called after three years with a date for a first assessment I politely declined. Psychiatric diagnosis is one of the most trial-and-error processes we have in medicine. I do believe some brain difference exist that account for the differences between people like me and others, but all that Psychiatry has done is they attached some acronyms to it. Beyond that? They don't know why, how, or what to do with us other than reeducate us to appear more normal. There is no better support for me out there than what I've built for myself over the years. I live remote with little human interaction. I work remote. I have self-built ergo stuff for my fucky joints so I can continue working. I choose my own medication. I allow myself to be weird and will not finish any day without a good wiggle or making a few weird sounds. Hey I even found an equally weird partner, lucky me!

It's of course entirely possible that I'm just making the whole thing up in my mind and could do fine in a presence type job, and that I could do fine without wiggles and noises. But at this point I don't want to know, I'm fine.

If self-diagnosis helps you set up your life to be more easy for you, go for it!

So I'm someone who's very involved with the autistic community in my country (at least used to, taking a break now, not sure when to come back). I'm just gonna pitch in and say that self-diagnosis is more of a symptom of a larger problem: which is lack of access to proper, official diagnoses. It's not perfect, in fact it can be harmful. For example, I know someone online who thought they were autistic and through a doctor who specializes in autism, they turned out to have BPD. Now, imagine if a self-diagnosed autistic who actually has BPD doesn't and/or can't go through a proper ASD assessment (and to an extent isn't aware of their BPD either, because as I said, lack of proper assessment), and they enter the autism community, manifesting their behavior in less than ideal ways, which does more harm and good. This is one possible, and perhaps damaging result of the emergence of self-diagnosis. But at the same time, the system doesn't provide the assessment, and so self-diagnosis is the only pathway to understand what may be wrong with us. The thing we must collectively fight for is to make official diagnosis more accessible and affordible, the methods vary depending on the country, of course.

Full disclosure: I was officially diagnosed as a toddler. But I know many adults who resorted to self-diagnosis or get diagnosed remotely (by people who may or may not be qualified to do such assessment) because assessment for adults is difficult here. The local psychologists have not proven that they use the proper diagnostic tools to assess autistics in adults; a big hurdle is the lack of local translations.