#autism uk

[persistentlyperplexingmoth]

I havent listened to this yet but I know it's going to be blood-boiling bad

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It just feels like such a betrayal for her to use her status and experience in the field of autism to bolster opinons as facts

Specifically at a time where it has real world immediate consequences because of public opinion and all the benefits reviews

Either she's entirely ignorant (and negligent) to the hostile climate she is operating in or she's intentionally perpetuating and legitimising that hostility

[loki-zen]

We’ve all heard a lot about shitty Autism charities, especially shitty autism research charities, so here’s an actually good one for a change:

Home - Autism | Autistica

Autistica is a charity which funds and campaigns for research to understand the causes of autism, improve diagnosis, and develop evidence-ba

Their research isn’t on ‘cures’; the goal is “long, healthy, happy lives.” They’re involved at the moment in trialling something I desperately want to see become a thing: regular health checkups designed specifically for autistic people, aiming to compensate for the barriers inaccessibility and alexithymia causes in accessing health care.

(Autism doesn’t directly cause any physical malady, but autistic people have a 16-year gap in life expectancy compared to autistic people due at least in part to issues accessing healthcare.)

A decent amount of their research concerns autistic adults, which is a big deal - most people with autism are adults, but in the UK projects concerning adults receive just 7% of the research funding that goes into autism.

[naegashutyoassup]

I don’t think autism is being seen from all lenses — except when they’re actually mentally or physically affected.

(I’m speaking as someone who has been diagnosed from a young age, so experiences may not be the same as what you see in the media!)

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Whenever you think about someone with autism, what do you think about? Chances is that you probably have the media depiction of it. However, that’s not how we’re all like — or at least 90% of the time.

If I have to say, I feel like there is a silent majority of us that may never get our voices heard enough to where people can see that autism does not always mean high functioning.

I was diagnosed at just age of 3. As soon as the doctors found that out about me, they immediately took control of my life and shut me out of any school that other kids would go to. I remember from a young age being sad that my older sisters got to go to school whilst I had to stay at home and be homeschooled by a special needs teacher.

Because of that, I never got to experience life outside of my own family and would feel alienated when mixing in with people that do knowing that I’m the only one that doesn’t. It really affected me — even now.

Whenever I tried to call out and complain to a social worker or a teacher, they would always come back to me not answering the question saying “but having autism makes you unique and special” or “but [insert celebrity here] has autism and they’re also smart” and some shit. The constant sugar coating is very prevalent here since it still happens until this day. It always didn’t feel right when they say stuff like that. But little did young 8 year old me knew that they were purposefully infantilising me and keeping me away from the truth — alas, it didn’t stop me from finding out the hard way when my parents told me that the doctors thought that I wasn’t academic enough, despise being self aware on how they were treating me.

I don’t know why this never shows up whenever the topic of autism shows up. It makes me feel alone thinking that only people with autism should accept it as a part of them when really, it was a daunting label that nearly cost my education and it has been such an emotionally alienating experience that I never wish anyone had to go through. And the fact that people are seeing it as a “quirky” thing and even lying about having it is such an embarrassment. Not even just that, but really insulting to people like me who had to go through something like this. Imagine having to go through something like that and not seeing anybody else having to do the same thing. It sure made me feel alone, and I hope you do too because it’s awful.

The UK system is literally fucked up. Apparently my second niece from my sister may have autism too — which isn’t bad by the way, but it’s scary to think that she may have to go through the same thing again. Having to second handedly go through this experience another time is exhausting and I just want it to stop.

Stop infantilising us. Some of us don’t need a lot of support.

Edit: Written something wrong so I changed it to make more sense.

[salty--zebra]

Okay, I really need the opinions of autistic people, especially those in the UK please.

So, I identify hard with a bunch of autistic symptoms and my psychologist has mentioned wanting to screen me for autism.

I have the option to go for a siagnosis but I have a dilemma.

With the way the world is going and the general attitudes of people I'm not certain I actually want a diagnosis.

So I'm looking for your opinions. What are the pro's of getting the diagnosis. What are the con's.

Why did you choose to get a professional diagnosis.

Or alternatively, why did you choose not to.

Thank you I advance I would really appreciate responses because I'm kinda spiralling.

[stimsensory]

Quick stim video with my little elephant mochi...

I discovered it's pretty fun to drop it onto the desk and watch it bounce!

I should be able to add some new mochis after self isolation is over 😊

(Video descriptions: video shows me squishing, pulling, and stimming with a small, pink elephant mochi toy).

[dragonwolfcrane]

I'm so mad right now argghh

The last autistic person just got chased out of my local autism charity. That's right, a charity that was supposed to be "by Autistics for Autistics" is now run by NT parents, not an autistic in sight. Autistic charity. There's enough groups for NT parents, but there's not enough for Autistics, there's almost nothing for Autistic teens/adults. This is seriously a huge problem.

The charity was started with the rule that it had to always have an autistic majority of trustees, and in the beginning it was running activities for Autistics, things that we actually want like gaming nights and a youth club that was educational but not patronising.

But NT parents put pressure on them to change and be more open to them. I'm not anti-NT, they can have support and all, but they can go to their own damn spaces, not take over ours. 3 years ago they started a parents support group and from there the NT influence grew, we started getting puzzle piece posters on the walls and the parents group got a Facebook page (the Autistic group never got one) and last week the last autistic trustee quit for unspecified reasons, but one can guess what the bottom line is: Autistics are no longer welcome here.

This group was different, I have grown up going to dull clubs where NT adults play stupid games with us to try and teach us (NT) social skills and we were always patronised, there's never a fully autistic space for young autistic with autistic adults running it, there's no autistic role models. This charity taught us practical advice and had whole nights dedicated to talking about special interests and so many cool autistic adults so we could see a possible future for ourselves. Now it's yet another parents group because the 90% of all the other autistic charities wasn't enough for them I guess.

I'm so frustrated.

[persistentlyperplexingmoth]

I'm currently going through the new uta frith interview of radio 5 and vent writing my thoughts as I go along (which I may post or may stay in my drafts forever idk its long)

But this is how I would sum it up:

Autistic people:

I have experienced real struggle in my life that cannot be explained by a diagnosis other than autism and I am open to really any help to manage my symptoms.

Uta Frith:

That's very sad, but unfortunately autism is my emotional support disability and only the people that I personally perceive as disabled enough can have it - could you just make up a new disability and call yourself that because this one's mine? :)

[persistentlyperplexingmoth]

I really hate the way that the media (right wing but also so-called centrist media too) will hijack how people choose to label themselves individually and use it as a broad attack line against a whole group -

So specifically I'm thinking how people with adhd/autism choose whether to describe themselves as disabled or not (perfectly legitimate either way) and then the media will contort this to say that adhd/autism is not a disability across the board- thereby diminishing the legitimate and necessary calls by autistic/adhd people for more/any support with their disability. The lack of nuance feels is targeted at a time when disabled people are being attacked across the board

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(Originally I was going to make a post about how we need to be more careful about calling adhd/autism not a disability as a community but then I was like fck that - policing how people identify is shitty and never works + the blame is on the media for creating a hostile atmosphere and regardless of what we do they'll find a way to attack us for it)