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 One of the reasons given is that their autism would be seen as "mild autism" and support maybe withdrawn.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

Again, your are differentiating in your analysis by SUPPORT NEEDS.

Higher support needs should of course lead to higher levels of care and financial support for SUPPORT NEEDS.

This does NOT equate to there being a different diagnosis of the medical condition which may present differently in different people like myriad other medical conditions. Not even factoring in the established fact that many of the specific difficulties posters on this thread have mentioned such as low IQs or inability to communicate in any way and no self-awareness at all are not even features of the medical condition in question, anyway! They are ONLY present in autistic people when they have another medical condition as well.

So this comment is just yet another nonsense.

Once again:

Nobody I have seen is stating that profoundly disabled children with multiple medical conditions that happen to include autism have the same support needs as autistic children/ adults who only have autism.

These children’s additional difficulties which make them different to the children and adults who only have autism are because they have other medical conditions as well which cause these additional problems for them that people who have autism only do not have.

As such, these children can be described as “profoundly disabled”, but NOT “profoundly autistic” as that is a nonsense and implies - in contradiction of the huge body of credible scientific research and data on the topic amassed by geneticists and neuroscientists to date - that there are somehow “levels” of autism that could be separately categorised when we know for a fact that there are not and this is NOT why this huge difference in presentation exists.

There are a lot of differences in manifestation of autism between individuals, but fundamentally all autistic individuals share some common set of hereditory genes that cause specific changes in brain structure which can manifest to different extents in different individuals with the condition (just like with every other medical condition!) but the things being described on this thread in relation to “profoundly” disabled children are not because their autism is somehow different to every other autistic person’s autism, it’s because they have ANOTHER MEDICAL CONDITION AS WELL that is causing them these additional disabilities on top of the autism. Some of them may interact, but it is not the autism itself causing these profound disabilities, as none of the things mentioned are a feature of autism or have any relationship to the function of the genes or the brain changes identified as common to all autistic individuals. These children/ adults affect by autism AND SOMETHING ELSE TOO are disabled by that combination, they are not “more autistic” or “profoundly autistic”. They are autistic people if they do indeed have these genes and brain structure that all autistic people share, and they are autistic people who have ALSO BEEN HORRIBLY AFFECTED BY ANOTHER MEDICAL CONDITIONS AS WELL, leaving them profoundly disabled.

This happens too, with children/ adults who are neurotypical, but is more prevalent in the autistic population, so there seems to be some interaction in the genes for autism with genes that cause other disabilities making autistic people more susceptive to them. This is the case with many illnesses and disorders e.g. immune disorders, heart problems, hypermobility. The fact these things are co-morbid more frequently with autism doesn’t mean that they are caused by autism or that autism needs splitting into separate diagnoses falsely to reflect co-morbid conditions and how those with a combination are affected, and that we need to pretend people who only have autism have some kind of different version of that condition that’s less “severe” and ignore the co-morbidities that are actually causing the profound disablement. It means we need to research why certain co-mormidities are more common in the autistic population than the general population, parents need to push to ensure they aren’t just fobbed off with an autism diagnosis and their child’s other conditions that are actually causing the majority of their worst problems left undiagnosed, and to find better treatments for this to prevent/ mitigate the impacts of these negative interactions between different medical conditions.

Nobody with autism only thinks they require the same level of care as a child/ adults with profound disabilities AS WELL AS AUTISM, just like they would not think this for a child/ adult who had profound disabilities and no autism. Autism is very disabling in many ways for many people but there is NO SCIENTIFIC SUPPORT for the idea that “profound autism” exists of that there is some separate version of autism that causes low IQs or learning disabilities etc. The research indicates that the people who ARE autistic who ALSO suffer profound disability (defined in this manner) do so because of their OTHER HEALTH CONDITIONS which people who are autistic but do not have low IQs or LDs etc do not have.

It is really hard to try to find a way to explain this any more clearly than I have explained it already multiple times on the thread. “Profound autism” does not exist. Some people who have autism are profoundly disabled but the cause of these additional disabilities which make them unable to care for themselves or learn any way to communicate etc is NOT because of the autism itself.

A lot of conditions that are not being diagnosed are being lumped off by doctors in the failing NHS with people told “it’s because they are autistic” when this is categorically not the case and research demonstrates this.

Parents with this profoundly disabled DC need to be pressing doctors to diagnose their other conditions as well which are the cause of their most severe disabilities that make them profoundly disabled, rather than attacking autistic people and claiming that they aren’t really autistic or not autistic “enough” because their DC have other problems AS WELL which are caused by OTHER MEDICAL CONDITIONS in combination with autism.

@Elbone here you go. This was after I told you I didn't think you knew what clinically significant meant (when you said that the majority of the population would meet the diagnostic criteria for autism). Now maybe that came across as vile? I admit it was a bit of a quip, but then I also genuinely can't think you can say that the majority of people would meet the diagnostic criteria if you understand what 'clinically significant' means as that's a fundamental part of what determines whether something meets the bar.

As I said, you may not have intended to be vile, but objectively I think most people would have interpreted your response as vile.

PS

I’m not sorry

I’m actually proud how unreactive I’ve been towards you ✌🏼

I really haven't. I have been opposed to your view but I have tried to do that without throwing personal insults around. I emphasis very much with the position you are in and how hard it must be. I just fundamentally feel that a separate category for profound autism will negatively impact some people who have very significant needs. And I don't agree that cognitive ability should be the deciding factor, and think we should listen to the voices of people who have been unable to communicate at some point (even if they can now), not as the only voice but as an important one, because they are massively impacted by this discussion.

But I am genuinely sorry if I said something to upset you. I really didn't intend to and we have actually been having some good discussion at times.

This thread makes me quite sad. What could be a positive discussion has just turned into a nasty bun fight with people bickering and trying to one-up each other.

Surely we should be able to discuss without trying to discount the opinions of others? It isn’t a race to the bottom.

Imagine that all these people used this energy to get together to lobby/petition for more support instead of squabbling.

I feel for all parents who are struggling to get help and support for their autistic children. I can only imagine how difficult and frustrating it must be.

I also feel for adults with autism - there seems to be an idea that they get support and are taking it away from others. There is basically no support for them.

Such a shame this can’t be more of a team effort to improve understanding and support for autism.

I agree absolutely.

I think there was the start of some good discussion and understanding from both sides.

I'm wondering if it's worth continuing on another thread when this fills with the understanding that when posters try to impact it like today maybe we just all ignore and carry on(I know I haven't today ). I think maybe we should all be able to say some things that maybe cut a little as long as they're not overtly insulting. I say this in recognition of how devisive the subject is and that we can all get a little heated?

I think you misunderstood but I see where you're coming from. I don't associate someone not understanding what 'clinically significant' means as them being stupid. A large part of the population doesn't. I'll be open that I struggle to value the opinion of someone who thinks that everyone would meet the diagnostic criteria for autism - that is the 'everyone's a bit autistic' school of thinking that I would assume would put both autistic people and carers of autistic people on edge regardless of where they sit on the 'profound autism'' debate.

But I find it interesting that you went from thinking I was implying you were stupid to accusing me of wanting to establish I was superior. That's what I personally found particularly vile - we're talking a lot here about a group of people with severe intellectual disabilities. I am more intelligent than them. I'm not superior to them. I am not crying into my pillow as I said but I am offended to be accused of thinking like that.

So you intended to be vile? Why lie and say otherwise then. Be vile if you want to be, but own it!

How disgusting.

Again, how disgusting.

I wasn’t vile

I haven’t even closely matched the vitriol that’s been thrown my way.

Nope. You see the outside.

I'd love to but on the condition that if I say something that upsets you, you pause, try and assume good intentions and then tell me in words of one syllable why I've upset you. I promise I will try to avoid making the same mistake twice!

I want to have this debate. I hate it when debates like this are shut down.

How do you not understand that it’s stuff like this that makes you come across as just not a very nice person? This nasty undertone you have in your posts is so unnecessary and you’ve been like it throughout the entire thread.

NRTFT

But I agree. And I’m agreeing as someone who is autistic. Happy to be told I am high functioning because I know (and have cared for) those who are lower functioning. It’s a spectrum and should be seen as accordingly!

That poster has written the most horrendous accusations and insults towards the OP. To then chime in with a “I couldn’t agree more” when someone comments on how vile the conversation has become, claiming virtuous victimhood, is laughable.
Literally laughable.

You’re entitled to think that makes me horrible. But it doesn’t change the fact that I found it absolutely absurd and it made me guffaw.

For clarity, the post of mine that was deleted simply said I laughed.

Nothing abusive

For clarity, Mumsnet don’t delete posts for humour, only personal attacks and abuse.

But you’ve been like it throughout all of the thread. It’s not because of that one poster. You’ve posted with that nasty undertone all along.

I had a similar reaction. There is something jarring about completely agreeing with a post that says we should not discount each others opinions if in the last post you wrote you quoted a post and called it a nonsense post and used caps throughout it which is generally read as shouting.

Well.

Unless you share the many cognitive difficulties that my child faces, whether they’re a result of autism or otherwise, and also share the exact way that they exist together and affect each other…

So do you.