Jeremy Stangroom

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)...

he couldn't leave the house, he had no written language, he tended to head towards the corners of the room he was in where he'd stim. I think he was living in a sensory hell. (But very hard to say for certain...)

Probably. Did you ever give him shades to wear? Ear defenders? Or if he is prone to throw things, just turning off flouresent lights and being quiet? I did that once for some autistic kids I was told were 'bad'. We sat in the daylit Sunday school room and were nice and calm.

This was a long time ago. You couldn't give him things to wear or even approach him. His parents could, sometimes (when they visited). He was calmer on the rare occasions it was quiet, but... that wasn't very often. This was a severely underfunded & understaffed residential home.

It's cruel. My mom used to threaten to put me in a home. I learned to hide and be quiet. All the time. I don't talk about it much because I was raised to think of my behavior as evil and not normal. I bet he was glad you were there. Even if all the bad stuff happened.

Probably a minority have spent a lot of time with such people. It's a substantial minority though; and many autistic advocates have high support needs themselves though, which is not obvious when you're meeting them through the internet. Of course it changes how you view things.

Have you ever been responsible for looking after the personal hygiene of somebody who screams & fights every time you come near? (I'm asking out of interest, not in an aggressive manner.)

I have been in more-or-less that situation, yes, although not someone who 'screams & fights every time you come near' - that's an oddly specific requirement! I have certainly been responsible for looking after people who have physically attacked me and made horrible noises at me.

Probably my experience skewed right towards the severest end of the range of issues that can come with autism. I think this particular lad was probably in "sensory hell" the whole time. If I had to guess. No verbal language, only very little non-verbal.

You cannot begin to imagine - actually possibly you can - how far way we were from implementing this sort of thing. It was a long time ago though.

I can imagine, although it's EXTREMELY UNCOMFORTABLE to do so, so I try not to! A lot of people still just don't know where to start making environments acceptable for autistic people. I think of @sbaroncohen mentioning those who 'appear to be in anguish for no apparent reason'.

This was the mid-1990s. I think we had an idea that sensory overload (as we would have seen it) was the most immediate problem. But absolutely no way to control it. No resources. No staff. Other (non-autistic) profoundly disabled kids for whom we cared. No power.

The "view of the issues" your side of the conversation is trying to get at is that "real" autistic people are a burden to society and make their families miserable. Try that "theory of mind" superpower people like you are supposed to have and figure out why that gets pushback.

what total bollocks