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.
When there’s hundreds of comments you know it’s going to be a trashfire in the comment section. Still make me disappointed in people though, somehow.
Reading all the comments I think what’s going on is that some places it’s tough as nails to even get recognized as autistic much less get assistance for it and other places professionals understand autism and can help and some places you will be abused for being autistic
I still don’t understand why so many people are against self-diagnosis. Someone is suffering and trying to find help, a lot of people, especially minorities and women, can’t find it professionally. What’s wrong with those people looking for help themselves? Having a word for what is different with you helps finding this help.
I’m not talking about people claiming to be autistic and demanding attention and accomodations, that’s a whole different story but trying to keep people from finding help themselves seems to be very wrong to me.
Because a diagnosis can tell you what you are, it’s not a supposition anymore, and you don’t have to convince yourself as it becomes an objective truth. I used to think I was autistic, and while I wasn’t that far, autism wasn’t the right diagnosis and that new information allowed me to act on the right things. I live a much better life now than when I was relying on my self-diagnosis
Yes, but you are answering on the experience that diagnostics are available to you, and what sounds like an assumption that this is universal.
The biggest point of contention is people who want to be assessed properly, but can’t get a professional to sniff their brains. They still are who they are and need help and support.
Of course, if it isn’t available to people, my point falls apart completely and I was in an ideal situation that isn’t as accessible to most people. (I live close to a mental health center specialized in autism)
Still it helped me tremendously and I want to encourage people to seek a diagnosis.
For people who don’t/don’t yet know, support groups like this one or ND friends are invaluable
Diagnoses aren’t objective. Sorry to break that one to you. Obviously they can help, but let’s not overstate what they are.
“I still don’t understand why so many people are against liars”
When you create an environment in which nothing has to be empirically proven then you attract liars. Liars will actively make things worse for people who are actually neurodivergent.
It isn’t that much of a stretch.
It’s not like you can prove that someone is autistic. It’s not like there’s a blood test, an x-ray, an MRI etc. that can be administered and the results be reproduced.
It’s diagnosed based on observed behavior and doesn’t really take into account what life feels like for the individual. So getting diagnosed can be very difficult for people who can mask well and on the whole don’t represent like a young boy. Those people can just go on and suffer further then in your opinion?
I’m going to repeat myself, I’m not talking about people who demand accommodations and attention. I’m talking about people who look for ways to make their life livable. Those people are not liars, they are suffering and searching for help.
searching for help
No I’m not saying they should suffer, I’m saying they should actually seek help.
Declaring you’re neurodivergent and associating with other people who claim the same is delusion.
Yes there are bad doctors. When you see a bad doctor you go to a different doctor. Otherwise all you’re successfully doing is ensuring people treat you differently. Which, in my opinion, is actually the point.
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!
