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 One of the reasons given is that their autism would be seen as "mild autism" and support maybe withdrawn.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

Autism is a set of behaviours, no doubt caused by a variety of medical reasons. Science is nowhere near to untangling all the possible genetic causes. Most parents will never know why exactly their child has autism. The co-morbid conditions cannot be untangled from autism easily either. For example, my DS has serious MH conditions directly caused by the way his autistic mind works. You cannot separate out the conditions.

Oh. Wow.

I was starting to give you the benefit of the doubt in starting this thread, despite you saying in your OP that changes linked with the "neurodisability movement and self diagnosis has meant that those with the most severe impairments are now not as catered for."

I was hoping that people would stop viewing disability as a zero sum game. That a rising tide lifts all boats, and if we push for more accommodations and support, we'll all benefit, including carers.

But this post? This is nasty and patronising. I'm actually gobsmacked.

Now and then I start to believe the world might become a more accepting place, and then I run across a post like this.

Never mind. I'm autistic. So I might "not understand".

https://www.mumsnet.com/talk/am_i_being_unreasonable/5517064-should-those-with-severe-autism-have-their-own-diagnosis-thread-2

Link to next thread

I said it might be possible that parents of profoundly autistic children feel pushed out of the diagnosis and that it had been appropriated.
A parent of a profoundly autistic child confirmed that sometimes it did feel that way.

But, again, you’re perfectly within your rights to rights to disagree with me and even to think I’m “vile”

Yes I have a loss of liquor - was mean for dive bed rest but could not and then slightly early and very fast birth with CMV trace found in sons blood 1 month post partum so suspected to have been there during pregnancy

I'd agree with you if that was what I thought was being said.
But I don't think it is.
I'd also question the determination of some posters who, knowing autism is now defined as being on a spectrum,
seem determined to opine that every person with autism has the same difficulties as themselves and if the manifestation of autism isn't the same as their's, then it's because of some 'other' syndrome/congenital abnormality that the parents/Drs/Science haven't bothered to identify.

Learning Disabilities and Autism have a clear, recognised and documented link.
Also, the seeming certainty of pp that autism is purely genetic is nonsense.
No such proof exists.
That is a scientific fact.

Although, for clarity, I will add that my son does have chromosomal abnormalites. So for him it's an extra layer of complexity.
However, it's the one thing that defines him the most.
It's the one part of him that's non-negotiable.
I have to handle his autism right or nothing else works.
Solidarity to all who struggle✊

@JustCabbaggeLooking There were multiple comments from posters here aimed at autistic posters telling them they weren't autistic enough - not verbatim. The appropriation comment is offensive and discriminatory. All of these threads end up the same way, with autistic MNs being abused.

I wouldn't defend any posts like that, please grab and post of someone saying that, if you can.
tbf, if it's the poster I think you're referring to, she was, for example, suggesting that people teach their children BSL but I honestly don't recall anyone saying she 'wasn't autistic' enough. Or being rude.
Perhaps this is another example of determination that everyone's autism is the same as one's own?

Also, the seeming certainty of pp that autism is purely genetic is nonsense.

At a population level, it’s highly genetic.
Not purely genetic.

There's the rub.

@ProjectHailMary please can you share all your sources for these scientific and medical facts? We all need to educate our doctors and health professionals who have misdiagnosed so many of our children.

Not the posted you asked, but I will paste the conversation points.

That’s exactly what I said I’d put.
The poster said maybe those with more severe needs should find a new diagnosis and I asked why should they have to? Why should it not be those with less severe needs.
They queried that and I hypothesised on how parents of children with profound autism might feel about being pushed out of their own diagnosis.

@Jimmyneutronsforehead

Note where that poster said “maybe they aren’t autistic” about profoundly autistic children/ adults…

I actually agree with you on this to an extent.

However I think you are overlooking examples like my son in the middle of the spectrum. On an NHS waiting list for years after nursery and speech therapy basically picked up on the fact he was probably autistic. Diagnosed finally after being in primary school a few years and getting to the top of the list.
His cousin was diagnosed with autism much younger and faster with very obvious development delays and a profound disability, so i'd agree the age of diagnosis reflects severity of disability in our experience.
You just seem to be focused on children either having a profound disability vs adults with mental health problems seeking a diagnosis later in life. My son falls into neither of these boxes.

My personal emphasis was the OP saying it is appropriation, I added a screen grab from the conversation for context.

The conversation then evolved into Kanners and Donald Triplet being patient 1, and not presenting as profoundly autistic and therefore it isn't appropriation, with other PPs stating he also blamed autism on parenting and basically to take kanners with a pinch of salt though they're my words and not verbatim.

Can we have a diagnosis back for high functioning people, if lower have their own?

Well we used to it was called Aspergers
But a lort of people were offended by it .

I’m not sure what you mean exactly. It’s well known that some conditions like certain infections during pregnancy, extreme prematurely, taking certain drugs while pregnant etc are all associated with an increased risk of autism in the child.

She didn't say they were misdiagnosed. Under diagnosed. The autism diagnosis was given and further investigation did not happen. Autism in itself does not cause the extreme level of disabilities of some of the children described in this thread.

Not all "high functioning" autistic people have the formerly named Aspergers. My cousin has Aspergers, I am autistic. Additionally my niece had global developmental delay, now classed as severe cognitive impairment. She has many autistic traits but was never diagnosed as autistic.

You mean the poster that multiple non-autistic people told she wasn't autistic enough if she could type to communicate?

Misdiagnosis encompasses various scenarios including failure to diagnose a condition, incorrect identification of the condition, or significant delays in reaching the correct diagnosis so the term was still correct. Where are the sources of these scientific facts?

I didn’t see her being told she wasn’t “autistic enough”. I certainly didn’t say anything like that.

I did see her being told that her autism was on a completely different planet to OP’s child and their needs are wildly different as a way to explain why the diagnosis should be split.