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 One of the reasons given is that their autism would be seen as "mild autism" and support maybe withdrawn.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.

Or maybe they are autistic and people with less severe needs have a different diagnosis?

Everybody knows what someone means when a parent says their child is profoundly autistic.

This is sort of the point - it doesn't need to be an official special category with everything that comes with that and there being a firm line people stand either side of. It's a short form way of describing characteristics of a child. I don't mind people using the term, I just don't think it should be a formal category because it's simply not that easy to decide who is and isn't there. If someone wants to say their child is profoundly autistic and they're clearly not, or to say they are profoundly autistic and they're clearly not, then more fool them - no one would want themselves or their child to have profound autism, but there are idiots all across the world.

@SassyButClassy

Is the absolute example of why parents get so agitated by these discussions

Why ? It's the complex needs group who want a different diagnosis

They had it first. It was expanded out to include others, not expended out to include them.

But it is the parents of the complex needs who feel the diagnosis no longer includes them.

The children with complex needs won't be impacted by the change of wording but other autistic people would be impacted by change of wording

I do some supply teaching in a special unit, attached to a mainstream school, for children with autism. I'm by no means an expert, I just sort of fell into it.
Personally, I think the children who are most impaired need something more than just "Autism" as their diagnosis. There's huge global developmental delay, no language skills and no purposeful communication of any sort. They're in school, but they aren't learning anything. It's just keeping them safe during the day so that parents can work.
They arrive in the unit at age 4/5, and leave at 11, still much the same. Perhaps some of the more extreme behaviours have lessened, but certainly not in all cases.

Because the diagnoses was originally theirs, it was then expanded out to an extent that they are now excluded from it and they wish to have it returned.
Because they could argue that it has been appropriated.

I'm agitated. There are huge implications to stating we all have all autism because, if that's the case, none of us do.

No one is saying we all have autism

But some people do - do you think people are clicking their fingers and getting their child diagnosed?
It's a rigorous process and no one would go though it for laughs and giggles

Appropriated?

Those who are diagnosed autistic aren't guilty of appropriation.

I've often thought of expressing this but held back because I know there will be a backlash of some form. You are absolutely right, it is appropriation.

They have been excluded from their own diagnosis! They’re the most vulnerable and in need group and you’re telling them to fuck off and find a new diagnosis!
What would you call it?

This is the problem. People with family members with profound autism are being silenced and told others, with completely different needs, should be their voice.

I am well aware of the diagnostic process, hence why I said, the current one needs scrapped and why even researchers are now stating the system needs overhauled.

No one said parents are diagnosing their children but they are seeking a diagnosis from doctors who are over diagnosing and the parents wouldn't be seeking these things if they weren't bombarded with the misinformation via TikTok, FB, playground gossip etc.

I'm not telling them anything. It's their own parents who want a different diagnosis

I personally don't think their is a need for them to have a diff diagnosis but lots of their parents do. So I'm not going to tell the parents they can't do something they clearly feel strongly about.

I also don't think any autistic person should be made to feel they aren't autistic

They want a separate diagnosis.

That's what I said

No. You wrote “different” with a heavy implication that they want a brand new one.

Different / Seperate in the context means the same thing surely

They don’t.

A work colleague has 4 children, 3 with autism, some similar needs, some different, one child would be what some would describe as having profound autism. She says that people she meets who want her children to have different diagnosis usually have an agenda of minimising at least one of her children's autism. She says that anyone who needs to know more than ‘autism’, such as doctors, school staff etc, will have access to their report. She doesn’t feel like anything is taken from any of her children, by them all having the same diagnosis overall, because more detail of each child is available on a need to know basis.

Then god knows what this whole post is about because I definitely read that OP wanted severely autistic children to have their own diagnosis.

She does.
She didn’t say she wanted a brand new diagnosis as you are suggesting.k

In fact, her exact words were “I've often thought of expressing this but held back because I know there will be a backlash of some form. You are absolutely right, it is appropriation.”

No they didn't. I suggest you look at the history of autism.

You could make this argument for the group of people who would have previously been diagnosed as having Aspergers. That is a large % of the people now diagnosed as autistic but it is by no means all of them, and it broadly isn't the group any of us are talking about on this thread.

There are plenty of people who would always have been diagnosed as autistic who would not fit within the latest definition of profound autism. There's been at least two of them who have confirmed this on this thread.

I would have been Aspergers not autistic - I am in two minds about whether that should be split out again (with a different name) but it won't solve the 'profound' v 'not profound' autism debate.