Those with severe autism need their own diagnosis

[Cubic]

Ok so, I'm being brave and putting my head above the wall. This is a long one as it's an emotive topic.

The autism diagnosis changed in the dsm (American diagnostic manual) in 2013, than hit the UK too and our diagnosis changed to include people who would have been diagnosed previously with other conditions; Aspergers, childhood disingenerative dissorder, retts and pdd nos. Aspergers had links to the nazis, there were concerns that the other conditions wasn't taken as being as serious/ a disability, funding wasn't aimed at those who were seen as "higher functioning".

The dsm gave levels 1-3 depending on support needs. Some people fluctuate and some just stay at level 3 all the time.

Until this point autism was seen as a severe disability. Those with the diagnosis were seen as being disabled, this wasn't questioned.

The diagnosis changes linked with the neurodisability movement and self diagnosis has meant that those with the most severe impairments are now not as catered for. Many of those with the most needs lack the ability to communicate and therefore can't advocate for themselves. Their carers are exhausted too.

Those who would be seen as more able can suffer with severe mental health issues that aren't always treated due to them having the autism diagnosis.

Profound autism is being tabled as a way to seperate the diagnosis so that those who have extremely limited communication, low iq and require constant life long care etc due to their autism not mental health can have seperate diagnosis.

This is opposed by many of those who are more able. One of the reasons given is that their autism would be seen as "mild autism" and support maybe withdrawn.

I support the profound autism diagnosis. I think there is a world of difference between those maybe diagnosed later in life, who work and have family and friends to those who require support in every area of their life for their full life (all the time, not fluctuating), with no communication who can't access our world.

This doesn't mean I don't recognise the needs of those who aren't profound.

IABU for support a seperate diagnosid
IANBU for wanting a seperate diagnosis for those with severe/ profound autism.

• knowing how these threads can go, I may not reply to every question, statement or post.

** I'm aware that terms like high/ low functioning aren't supported by many of those who are able to communicate well.

Greta was nonverbal and unable to do basic self care at age 11
She cried at night when she should have been sleeping. She cried on her way to school. She cried in her classes and during her breaks, and the teachers called home almost every day…
She was slowly disappearing into some kind of darkness and little by little, bit by bit, she seemed to stop functioning. She stopped playing the piano. She stopped laughing. She stopped talking. And she stopped eating.
https://www.ohmymag.co.uk/entertainment/greta-thunbergs-life-her-family-childhood-and-her-aspergers-superpower-explainedart23133.html

The needs level can fluctuate. You can be not profound one year, but profound the next.

Yes, and you can go from verbal to non verbal.
Autism is a disability that changes over time and not always in a positive direction.

Complete rubbish. You don’t get anything for a diagnosis, just need.

Persistent deficits in social communication and social interaction across multiple contexts

Very common. Increasingly so after Covid.

Restricted, repetitive patterns of behavior, interests, or activities

Most males I’ve met. How many posts on here are by women saying their husband’s cycling/ gym/ football/ gaming obsession is ruining their relationship?

How many times do you see women posting about their partners and multiple posters suggest that he has autism?

The spectrum is so wide that it incudes even the most vague interpretations of these issues.

As I mentioned previously, I have two brothers who have been diagnosed with autism.
One is at uni, with a large group of friends, he has a girlfriend and is studying an insane degree.
The other is in a home, being fed, having his nappy changed and with no idea what is happening.

They share no overlapping problems. They share the same diagnosis.

Yeah that’s right our kids are getting autism diagnoses because of Covid and liking cycling.

Do you do this with all disabilities?

There is a clear link between autism and being the victim of a crime, including being groomed to commit a crime.
You need to be a bit more objective than the old chestnut of my son could never.

You’re misunderstanding me.
My point is that the criteria for autism is so vague that many neurotypical people (if that exists) would identify with them.
They have to be vague for it to cover such an insane wide range of needs.

I have not stated that having an obsession makes you autistic.

There is more to it than what you are saying. Repetitive patterns would include things like eating the exact same breakfast for 15 yrs in a row, even on holiday if the person could manage a holiday they’d likely put the food in the check on bag. Having a sports hobby isn’t an obsession. You are reading it was widely as possible but the diagnostic criteria take it to the extreme.

They aren’t vague to a professional. They are to you because you don’t know what they really represent.

And no neurotypical people eat the same breakfast every day?

I have brother on both ends of the spectrum. Incredible extremes. The quality of life are on different planets.

They’re not vague in diagnosis.

Not usually. I mean exact same breakfast. Like 1 brand English muffin with this special brand of strawberry jam and a special brand of cranberry juice every day for 15 years non stop at the same time while doing the same activity. Nothing else for breakfast ever. And that if they can’t get this, they refuse to eat or have a meltdown. And this is just one of many repetitive patterns they have to have every day.

That doesn’t mean vagueness.

Ok.
I disagree.

I believe that it is vague if you can lump such a wide range of needs, symptoms and behaviours under one diagnosis.

We’re not going to agree.

Porridge - Tesco golden syrup instant porridge pot, poured into Duggee bowl.

Lunch - one cream cheese sandwich, must be Philadelphia, cut into squares. Orange Gruffalo plate.

Dinner - lasagne, Tesco’s own. Not homemade or any other brand. Cut up until essentially mush. Blue Toy Story bowl.

Snack - munch bunch yoghurt, small Kinder chocolate bar.

That the kind of thing you mean? 😂

It never works the other way around though? People who are profound stay that way, they don't fluctuate at least not enough to move levels etc. They are that way all the time.

Yes - the inquiry was critical of the fact that various agencies had regularly used his autism as an explanation and excuse for his violent and dangerous behaviour.

I’m glad the inquiry has criticised this - it’s frankly outrageous, and dangerous for autistic people and society more generally.

Fine.
100C is the opposite extreme of 0C that doesn’t mean that Celsius itself is vague.

No because you’re completely wrong.

Have you read the current EHC plans which spells out their individual needs?
I wonder if their parents would agree with you. The development a profoundly autistic child experiences is different but not lesser than any other child. You are making a lot of assumptions about the value of their experiences and I can't imagine the child who has no development. .

Terrible metaphor but ok 👌🏼

Ok ☺️