It's been quite a long time, that I've been chewing this topic in my brain but wasn't sure, how to put it to words. The topic in question is the discussion about autism itself and quite recent statement from Uta Frith, that the spectrum has collapsed. I would like to share here my observation and analysis. I'm also curious of any other thoughts and points of view, that might have not come to my mind. Just shortly- I'm not diagnosed, suspected autism (according to ICD-10 Asperger Syndrome, still diagnosed in Germany) I'm awaiting my assessment autumn this year. I expect to receive my answer and "ticket" for getting support that I need. If I'm not autistic, I want to know, what instead. And there is the dilemma, what should I do with my account here if I'm not autistic.
But going straight to the point. As Uta Frith said, "the spectrum collapsed" I would say different- it has not collapsed. There is quite big mess in a discussion in media and social media about autism. As a result, there is a confusion and one may ask themselves "what is this autism actually?". The discussion and often "education " provided by activists or YouTube personalities lacks structure. And you can find quite many opposite statements. Example: one says "why everyone pathologises autism, it's just a different way of perceiving world, not a disorder or disability, its a superpower". Other one says: "I'm done with it, autism is being romanticised, it's not just a quirk, it's a disorder and disability". There is also quite much hatred. Often caregivers of severely autistic people criticise mildly autistic people, because they belong to the same spectrum, but their needs are much lower.
What I think, should be emphasised and clearly stated by everyone taking part in the discussion and education- autism is a spectrum. Spectrum of traits and levels of disability. There are people who need very substantial support, who are obviously and visibly disabled and noone should talk about their condition being "just a quirk" or just a difference. There are people, who can function a bit better, but still need substantial support. And there are people, who seem to function well. Until they have to deal with the big world on their own. And then it turns out, they can't manage it on their own, or they are much more vulnerable than an average person and should be supported while functioning in this big world. Hatred will not help anyone, but destroy the spectrum as it is. For me personally, I'm not glued to the label "autism", should tge spectrum be splitted, then be it, but wisely, to not leave anyone without support. There are quite many people, whose needs change over time. Should they be then rediagnose with other conditions? The spectrum of traits and needs serves them much better. I also have impression, that Uta Frith is only upset about people being misdiagnosed with autism. Yes, misdiagnosis happens. Across all conditions. Is she also upset about people, or autistic people being misdiagnosed with other conditions? Just a rhetoric question. I was misdiagnosed with tourette and forced on awful meds. Later was confirmed by a team of neurologists that it was not tourette, but nobody bothered to have me further tested.
The spectrum of needs functions not only in autism. Tgere ate people with down syndrome, who are also mildly to severely disabled. Does anyone get upset about it? Do people with down syndrome hear "you don't look..."? As I found out, autism may also appear in specific facial features, but they are much less visible than features of people with down syndrome and absolutely not all people on the spectrum have these facial features.
I hope I will stop hearing, that I "just have trauma" or "just depression" but be taken seriously instead, whatever condition it is. I hope this post will not cause a big argument here.
