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My brain chewing thoughts

Alien0n3arth

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.

Parents

  • I've not seen this Uta Frith person, but I do understand that people like her are causing problems as of course are those with oposing views to hers. I do think there's a problem but I'm not sure where it lies, I think it should be obvious to all by now that autism has been around for years but not acknowleged, people were classed as a bit odd, not academic or loners or all three, now these people have a name, a label and that puts them in the sights of those who think people "can snap out of it" or pull thier socks up" or whatever unhelpful phrase you want to use.

    I do hate it when people refer to autism as a superpower, I think part of this is due to the portrayal of autisic people as nerdy genius's on tv, they do exist, but only in a tiny minority, just as a minority are more profoundly disabled, the rest of us are stuck bobbing along in the middle trying to get on with life as best we can. Most of us don't need full time help, carer's or whatever, we might just need more help for certain things and find ourselves limited in what can do without succuming to panic attacks and burnout. 

    I've noticed an increasing narrative about the need to sociable and how much we need other humans for activities, company and for our "mental health", (another phrase thats becoming over used). But what about those of us for whom hell is other people? One of the things that most strikes me reading threads here, are the numbers of people who need signifcant amout of alone time in order to function at all, this is against the current "mental health" narrative, so we are self isolating rather than having some much needed alone time.

    What I wonder does an autistic person look like? I think its similar with any hidden disability, people seem to think if you're not sat in a wheelchair dribbling and moaning then you can't be disabled, even if like some you're walking around with a ticking time bomb in your head. I dont' think theres an overdiagnosis as such, but with a diagnosis people arent empowered to do things for themselves, we're just suposed to sit passively in our pigeon holes and wait for something, anything, I don't know, but  do think that like so many areas of life, its become professionalised, we're not really encouraged to do things for ourselves, but leave it to someone else who knows best, except so often they don't. Instead they speak in jargon that only the inititated understand to exclude us from our own care and wellbeing.

    I can understand why those who care for those who are profoundly affected get cross, but I think their anger is misplaced, it shouldn't be a those of us less affected, but at the systems that make everything take so long and like wading through treacle and having to compete against others for resourses.

    A spectrum disorder is like saying someone has a cold, that covers anything from a runny nose and a tickly throat to something that puts you in bed for a couple of days feeling like you've been hit by a train. I think most people don't understand what makes a spectrum disorder different from a disease, if you have measles then every case will look largely the same with the same symptoms, but a spectrum looks a bit pick and mix. People don't understand that we don't get to choose how affected we are, what symptoms we get, but I'm damn sure most of us would choose differently had we ever been asked, except we're born this way. I suspect there's a bit of diagnosis envy from those who like a bandwagon to hop on, just as I'm sure there are people who get help that others don't because somehow they convince others they need it, leaving the rest of us wondering how on earth they got all this help.

  • in reply to TheCatWoman

    Yes I also don't like the "super power" narrative.  In fact I do have some a bit unusual abilities,  they are mostly useless. Saying that autism is a superpower harms those who are most affected, and it may attract some bad actors with high narcissistic traits (wanting to be tge supermen with superpowers) and may aldo fule such social media trends where people (usually young people) make fun out of autism and other neurodivergent conditions. 

  • in reply to Alien0n3arth

    So do I, but they're only of any use when watching quiz shows or playing something like trivial pursuit

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