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I worked as a care assistant for a year or two (partly) looking after kids with severe autism. I often think autism activists have absolutely no clue just how profoundly disabling & destructive the condition can be.
There are autistic activists who've never had much experience with autistic people who are substantially more disabled than themselves. If you think this is a general rule, though, you should probably do more research. Think you'll find this interesting:https://nationalautistictaskforce.org.uk/an-independent-guide-to-quality-care-for-autistic-people/ …
I think it's pretty close to a general rule among American autistic advocates who have claimed the label for themselves without diagnosis, assessment, etc
That has certainly not been my experience.
Many of the people who claim the label for themselves without a formal diagnosis come to the realisation they're autistic themselves after a family member receives one.
Others come to see themselves as autistic because they know autistic people from other contexts, and realise how much they have in common. Sometimes those autistic people are very decidedly disabled; sometimes less so. Either way, most understand highly disabled autistics exist.
Right, but how many have spent a lot of time with autistic people with severe disabilities? And if they did, do you think that would change how they viewed the issues?
I'm curious what you think of as severe. Because I have probably done them all. Do I not get to be an expert if I was there, experiencing it? Or is the fact that I can use text as a means of communication invalidate my experience?
The lad I helped looked after had no verbal language, very little non-verbal language, nearly always screamed with any human contact (sometimes not with his parents), unable to look after his personal hygiene (to the point where it was dangerous for him)...
A lot of them do because they experience it every day! They just don't want to buy into the common doom narrative because they are sick of it and it isn't helpful
Autistic activists are autistic. They do know what being autistic is like better than any non-autistic person ever will. Most of us do what we do BECAUSE we know what it‘s like. We so often can see what non-autistics can’t see - what‘s going wrong, what can be done etc.
When non-autistic people look at autistic people with any sort of problem THEY think „That‘s their autism. How horrible.“ When autistic people look at autistic people with any sort of problem WE think „Oh that‘s because of XYZ, let‘s change XYZ and they‘ll do much better.“
You DO realize that many autism "activists" that are #actuallyautistic are also parents of autistic children? My child is "severely" autistic. She is 7 years old, nonverbal, still wears diapers, etc. I am aware how "profoundly disabling" ASD can be.
Oh, you've 2 years of experience with autistic kids? How cute. I'm autistic, I worked as a teacher supporting autistic kids for 2 years and I have two autistic kids. Autistic advocates want ALL autistic people to get what we ALL need and for ALL of us to be heard.
You are typing this because you believe that the children you 'care' for are not like us. That they don't know. That they don't remember. You think that their self-harm determines their intelligence. I was that biting, screaming child. What will your charges say about you?
Yeah, you have more knowledge of autism from one year of sometimes working with autistic children than people who have actually lived with autism and experienced the many struggles that come with it their entire lives.
What autism activists are you reading? Are you reading Ido Kedar who is nonverbal and requires 1:1 care? Cal Montgomery who spent most of his life in institutions? Any Sequenzia? Like... you realize autistic people know what autism is like, right?
Screaming as a result of any human interaction, no self-care and no verbal language were the most common disabling symptoms I saw.
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