Autism

[lolly07766]

I know there are many threads concerning this subject, I've just read one now.
I have a son with severe autism, limited communication and obvious learning disabilities, aibu to think the diagnosis/description should be changed for high functioning people, as opposed to those who have serious disabilities.

Just going by my daughter’s diagnosis report. Mine is still being drawn up. I don’t know how levels can be given as you can be severe in some areas and moderate in others. Which bit do they focus on to give severe?

People are given the autistic diagnosis as adults because they don’t like people and don’t want to travel. So yes “a little bit weird”.

This thread is packed with this stuff. Factually wrong, insulting and ableist.

Right but diagnosis reports aren't consistent nationally. And the rest of my post was clear this type of banding isn't helpful.
I think that LDA (learning disability and autism) v A might be a start.

I hate it too. It's actually made me feel a bit sick.

I don't hate it. I don't have anything in common with Temple Grandin for example except a diagnosis. I also can't relate meaningfully to the experience of being non verbal and with behaviours that challenge. But we all have the same diagnosis currently.
I think if there was more nuance in diagnosis that would be helpful.

I took my dd to an autistic girls club she found it very awkward to make friends due to her social difficulties and just sat in the corner. I just don't know how to help her. We were suggested another club but the children there are physically disabled etc. She kind of falls between two stools.

Exactly. It's impossible to do because it is a spectrum, with different strengths and weaknesses in different areas. Obviously some outliers will have a very even distributions (i.e. be very badly affected in all areas, or only affected enough in each area to just meet the diagnostic criteria) but this is unusual, the norm is for spiky profiles around the circle and therefore categorising people in a meaningful way by effectively summing up different types of functionality into one overall "score" is impossible.

It would be like asking: which shopper has more in their shopping basket?
Shopper #1: 4 apples, 2 cartons of orange juice, 3 packets of sausages, 2 packets of rice
Shopper #2: 6 eggs, 3 pints of milk, 4 pizzas, 1 bag of pasta

Not only impossible to answer but utterly pointless to ask.

I question the diagnosis of an autistic person who isn't impacted by their autism
How would you even get a diagnosis if you weren't impacted? I got late diagnosis last year and my assessment was thorough and very detailed. I got it because I met the criteria and because autism has impacted my whole life and very much continues to do so. My 52 page report would indicate that it's far more than 'not liking people' or being 'a bit weird'.

Ds would also be considered 'high functioning '. At 18 he has enhanced PIP for daily living and mobility and attends an independent special school for young people with complex needs, this is funded by our local authority.
He can't leave our home independently and needs lots of support with daily living. I'm not sure he will ever be able to live a fully independent life.

If anyone that thinks that the way autism impacts our so called 'high functioning' family is just 'a different way of thinking' or a 'superpower' or something to talk about on TikTok, they are very wrong. It brings pain, anguish and significant MH difficulties, including suicidal ideation. If I could take autism away from Ds and myself, I absolutely would.

But that’s impossible OneFrenchEgg for reasons the previous poster has explained.

I do think this needs some discussion but the idea that some people have that someone with ASD isn't disabled enough because they are academically able and verbal is quite insulting. Would anyone ever say that about an academically able, verbal child that needed a wheelchair? You wouldn't diminish their struggles because they are visible and very obvious. Just because a disability is invisible doesn't mean someone is any more or less deserving of help and support and acceptance by society.

@Bookegg @BigMadAdrian yes shocking the ignorance

I’m not sure what it is you’re disagreeing with, but I’m just saying that people seem to be under the impression that just because a person is ‘high functioning’ in that they can communicate and hold a job etc that they aren’t as’badly’ affected by their autism as a person who is nonverbal and requires help with more basic care and that simply isn’t true. It’s just different.
The effort required for me to live even vaguely like a neurotypical person (and because I’m academically able and can speak that is what society expects of me) is huge.
I actually really don’t like the low-medium-high support needs classification system as it implies a greater and lesser degree of help is needed, and it’s not that, it’s a different KIND of help. Particularly if what is being asked of us is to cope in a NT world that doesn’t understand us.

There are a lot of programs talking about autism rather than it being hidden away, and it's clear the spectrum is wide and diverse. It's more about education than changing names

This! That’s exactly what I’m getting at. 2 of my kids are at university, the one who is nonverbal gets a huge amount of support. The other very little. It’s a stark contrast and very hard on the ‘less’ disabled one as she would be left to flounder if it weren’t for having great friends and family who help her.

@Intrepidescape what a load of fucking bollocks

I find the severe learning disabilities label much more fitting for my son, who had his ASD diagnosis very young (age 2). The SLD diagnosis came later, but is much more meaningful for the difficulties he has.

@Ca1mingC1arySag3 what's impossible? That I have a diagnosis of moderate? That I think levels don't work anyway? That I think LDA and A would be a good start?

Yes, i see LDA used for learning disability and or autism, but if there was a way to use something like SLD-A and A that might be helpful.

I was going to raise the question of 'levels with @JarByTheDoor.

Whereabouts are you based @JarByTheDoor? I know that in the USA levels are given, but not here in the UK. I'm not sure about Australia or NZ

I can't see how being given a level would benefit anyone, as needs can change over time, and being saddled with a 'level' could potentially limit the support available, or lead to someone's abilities being underestimated.

Apparently levels are in the DSM5 and shouldn't impact the services received. DSM 5 isn't used as often in the uk but will impact the new ICD apparently.

www.autism.org.uk/advice-and-guidance/topics/diagnosis/diagnostic-criteria/all-audiences

Ds was diagnosed at 7, his level of needs and support now at 13 is much greater than it was at 7. He also has a lot of the comorbid conditions alongside autism which present different challenges.

I think some people are looking for black and white answers when the fact it is a spectrum, and one that overlaps so many other spectrum conditions, makes that impossible.

ideally we need to focus on the individual not the diagnosis.

Well put. We are supposedly meant to moving towards a less discriminatory society yet for some reason when it comes to autism there are a group of very vocal people who want to minimise other people's disabilities. And for some reason when it comes to autism legal protections againsf such discrimination seem to be ignored and people are allowed to continually spout this stuff even on public forums.

This is so very well put.