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 One of the reasons given is that their autism would be seen as "mild autism" and support maybe withdrawn.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

Ok so, I'm being brave and putting my head above the wall

Not really. There are already many, many threads about this exact subject.

I've seen many on autism in various forms but not specifically about breaking the diagnosis back up.

Wow! You were quick to reply.

Yes I agree. Would help get people the right support they need for every day living, expectations that are put on them and the right benefits

the impact autism can have is so varying (similar with adhd but medication can help)

while the changes may have helped people who are high functioning which is good I am not sure how it has supported people (and their families) ina not sure how this has helped those who having autism is far more challenging

I think this already does happen in regards to support. someone who has low function autism will get more funding and support than someone who has higher function autism. it's also a spectrum so needs can be spikey in different areas. Most children who have high functioning autism will not qualify for pip or extra support once they reach 16 years of age where as a child who has significant needs will be entitled to pip and continue to receive support.

There have been loads. Why not go and read one of them instead of making a new one?

I wanted a thread specifically about this and not about other area's of autism.

I think it doesn’t need its own diagonsis but it’s VERY over diagnosed or self diagnosed and some people make out they have severe autism when it’s obviously not. People just need to stop taking the piss about it.

I say that as an autistic person with a moderately effected autistic learning disabled son. Both our autism is very obvious to people who don’t know us. I am very sick of the phase “everyone has a bit of autism” like UGH. Bring back the high & low labels!

Because everyone has their own take. You don’t get to dictate what people want to discuss.

There's also nothing brave about posting anonymously on an anonymous internet forum.

But YANBU OP.

Thank you for this post. I think your stance is quite unusual or unusual for what I've seen.

I agree about people taking the piss and I'm not a fan of self diagnosis, I can't imagine any other disability where you can opt in.

This again? You said yourself you know how this will go. Look at every other thread about it. There was one last week which descended into ‘proper’ (profound) autism and people just being weak.

Adults who are diagnosed but don’t have profound needs don’t get any support once the diagnosis is issued.

But this thread (just like every one before it) will be full of people talking about lack of resilience/over diagnosis/the fact that people over a certain age shouldn’t seek diagnosis etc. Then the real ableist stuff.

it is actually quite boring now.

Ah so it begins…

The thing is, it isn't a dichotomy between "nonverbal, high support needs, profound learning disability" and "after marriage, kids, and a decades-long professional career, an autism diagnosis helped me understand my quirks".

A more helpful distinction is probably something like "autism with LD" and "autism without LD". But it isn't that neatly sortable.

There are so many threads about this and it's really boring. If your profoundly autistic child isn't getting the support they need, it actually isn't the fault of what you perceive to be the "lucky ones" who supposedly luxuriate in some kind of Autism Lite that they can cast off at will.

It doesn't have to.

I am actually hoping it doesn't descend into that and a more civilised conversation can be had. I did try to put both sides across in my OP but I am bias.

What about autism with MH and autism without MH also or a mix? Autism with MH and no LD?

The DSM committee don’t read Mumsnet.

There isn't really any support to withdraw from the "mild" autistics, because they don't tend to get any, at all.

I understand your point but I don't think it actually changes anything. Those who are autistic are autistic. Whether the person requires care for their autism or their mental health or maybe both or maybe not at all, it should be assessed and dealt with accordingly.

Whilst I'm not a massive fan of telling people my child's medical diagnosis, it is clear upon watching my DS that he is severely mentally disabled. People might not know he is autistic but they know he isn't NT. They obviously won't know he has an ASC diagnosis with a moderate to severe learning disability. I only share that he is autistic when appropriate. I will explain he has very limited understanding, cannot speak and will not respond to verbal communication, no matter how nicely, loudly, authoritatively you ask/tell him.

I really don't enjoy the assumption that I've chased a label and it must be an excuse for my shitty parenting. This seems to be on the rise and it is not ok. I'm an amazing mum and I have an amazing son who doesn't even understand his struggles in this world, and I'm so pleased he doesn't.

That being the case, would you be opposed to breaking the diagnosis up if it wouldn't make a difference materially?

Completely agree with everything you've said @OP. lol at posters telling OP there are already other threads and why haven't they engaged with those instead? Dear posters, why are you on here?

Anxiety.

As a teacher I've taught many children with autism of varying degrees/needs. From children who will have struggles but will be able.to live independently, to others who have no communication, including no speech and will never be able live independently at all.
When i read that some people think its a super power I do acknowledge that some really do well esp on their interests but then I think of the others and how this must be demoralising for parents whose children will never manage this.
I recently watched a repeated programme, 4 families with 'severely' autistic children, regularly violent towards the family and how hard their lives were, lack of support from every direction, failed by the services who should have been helping/supporting, who have no choice but to keep going. Ofcourse there are highlights, one young man just totally calmed when in a pool and it was wonderful to see the family love when demands weren't overpowering.everyone.
Personally I do think these differences need to be recognised in some way.

So should stage 1 cancer and stage 4 cancer be re-classified as different diseases?

Apologies if I’m wrong, but is autism now classified in levels instead? Does that not help in any way?