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 One of the reasons given is that their autism would be seen as "mild autism" and support maybe withdrawn.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

Jesus Christ.

IT ISN’T THE AUTISM THAT IS DIFFERENT.

There are no “levels” or autism. There is not a shred of scientific evidence for this and a huge body of peer-reviewed academic research stating the opposite. “Profound autism” isn’t a thing, it does not exist.

Children who are profoundly disabled are not profoundly disabled (in terms of IQ etc) JUST BY AUTISM. They always have another condition as well that has caused this because it is NOT a feature of autism or caused by any of the genes or brain differences related to autism.

I really don’t think I can explain this any more clearly.

I mean. There are levels, that’s what the DSM is. Levels.

I also think that the reason you’re seeing people “disregarding/dismissing” some of the comments from autistic people on this thread, is that they’re generally speaking - preachy, and are coming off to others like they hold the authority on autism and other complex needs, and they don’t.

Just monologuing or ranting at people is not discussion or debate.

Whilst most of us can acknowledge that communication is likely because of autism, that doesn’t mean other posters have to like or engage with it.

One of my core beliefs around my son’s own needs is that other people don’t have to accept him doing things they find distressing or distasteful. He doesn’t have the right to be constantly agreed with, pandered to, or liked.

What you’re seeing from people not wanting to engage with debate with people who are behaving like they are the autism authority, is that in action.

You're doing an amazing job, people just don't want to learn what autism really is.
A previous poster even suggested that support should only be given to the most seriously affected people, without saying what would then happen to everyone else, it's ludicrous

Thank you for patiently advocating for everyone.

I hope the fact you have 91% saying you’re not being unreasonable makes you feel better after some of the ruder comments directed towards you, OP

Support should be givn to everyone that needs it the realiity is however that often only those with the highest level of need get support becauase resources are limited and sometimes those with the highest level of need dont get adequate support

The DSM is American. Levels aren’t generally used in the U.K.

This. This is what interests me as well.

I personally think we will identify one 'cause' of autism in that we will identify one biological marker that makes something 'autism' (there may be more than one thing that leads to that biological marker), but that we'll find that there are multiple different conditions that are currently being classified as autism that present similarly but are actually distinct conditions.

The reason that we think there are multiple 'causes' at the moment is that the condition is being diagnosed primarily on the basis of symptoms. Given the very clear family history in so many cases there will be a biological marker, we just haven't narrowed it down yet. Same thing for how often more 'severe' cases present with other significant issues.

Once we have more information on that, we can start to categorise, including splitting the condition as needed. I'd be pretty confident that the way we determine those categories will be nothing like the current proposed definition of 'profound autism'.

I do return to my question that I don't think I've seen answered - what would be the reason to split out 'profound autism'?

You’re explaining clearly and you are not rude. People aren’t prepared to hear it. But it is appreciated by some of us.

Which is why people have repeatedly told you that there is no scientific basis for this, it is nonsense, arbitrary and totally unworkable. And would likely make no positive difference to the support any autistic person received, anyway. It’s not like there’s a bunch of support currently going to autistic people without additional conditions as well which make them profoundly disabled: those who “just” have autism get no support whatsoever as it is. Their children have NO STATE SCHOOLS IN THE ENTIRE COUNTRY (mainstream or specialist) set up for autistic children who are academically able but need smaller classes and a quiet, calm environment in which to learn. CAMHS won’t see them at all when they subsequently have a mental health breakdown. There is no respite, no support whatsoever, just endless legal battles for them even to be able to attend any school at all.

These children who “only” have autism aren’t taking away any resources from children with profound disabilities: they get NO PROVISION AT ALL as it is. As do adults with autism and no LDs or other disabilities.

So wind your neck in and start addressing the actual issue which is identifying which conditions are actually causing these profound disabilities for these children, which are NOT caused by autism on its own, there is NO evidence of that. Stop attacking autistic adults who could be good allies to try to help your children because all of those I’ve ever met understand absolutely that OF COURSE children with profound disabilities caused by autism PLUS some other conditions obviously need far more care and financial support.

I work full time. I’m autistic. You have no idea of the toll this takes on me. I have two autistic children whom I raised alone. I don’t begrudge any part of the tax money I pay that goes towards supporting children with profound disabilities despite me struggling myself and in effect having to work extra hours each month to the detriment of my own health and that of my own children to pay for it.

What I will not accept is people spouting these damaging and disgraceful and discriminatory comments towards autistic people who do not have the other disabilities that make some children profoundly disabled, listening to people telling these vulnerable autistic adults who have been brave enough to post here that they are “less severely autistic” or “not profoundly autistic” because the people writing this nonsense are too stupid or lazy to bother to research this and understand that their children’s profound disability is NOT CAUSED BY THEIR AUTISM. And that there is no such thing as “profoundly autistic”, and despite being told this they still keep posting the same nonsense anyway rather than going to find out about it and finally reading the research (I mean, one would hope they’d have done this when their children were first diagnosed, but if they for some inexplicable reason did not then having had it pointed out you’d think that if their actual concern was their children they’d do so now, belatedly, rather than spend their time trying to argue night is day and direct their anger at adults on the internet who happen to have one of the medical conditions their child has and pretend that because these strangers don’t have the other conditions that mean their child can’t communicate and has impaired IQ and other problems that must mean that these adults should be insulted and don’t have this diagnosed medical condition at all and all of the doctors are wrong).

Try to get a grip on reality and stop being so vile to people who were very accommodating in tone for a very long time despite the continual insults levied against them here just because they are not the same as your child who has one medical condition in common with them AND ALSO OTHER MEDICAL CONDITIONS which are the ones causing the majority of their problems.

I’d like it if you stopped shouting at people.

And the idea that mainstream schools don’t have small group sizes available is incorrect. Many schools are additionally resourced, some of those are specifically for autism, and that’s what those resourced provisions are for.

If you want to read one opinion, experience or view point on this, and don’t wish to have to accept that other people have different ones to you, read journals, articles etc.

Mumset is a place for conversation.

I haven’t been “vile” to anyone.

You’re experiencing a huge reaction to other people not agreeing with you. That’s not my responsibility.

Thank you. I am perhaps becoming a little less polite in later posts (!) because I have had enough of seeing posters, some of whom seem quite vulnerable and have been very brave to post, repeatedly attacked.

It just shows that the initial post and most of those responding were not doing so in a spirit of genuine discussion of the topic. It was attack after attack - I read through it for a couple of days when I had a moment before posting on it myself today and was disgusted by what I saw, so felt I had to speak up.

I am not really sure who the people being so nasty think they are serving by bullying extremely vulnerable adults who have been brave enough to reply.

I wonder whether this is how they would like their even more vulnerable DC to be treated when they are gone. I suspect not. Perhaps they should reconsider how they approach people who are not remotely trying to “steal resources” from low IQ children with multiple disabilities, and just want a little respect and for these people not to tell them all scientific evidence should be ignored and we should pretend that autism comes in “categories” or “levels”, when actually the autistic adults I know would be some of the very best advocates for the cause of these children if their parents would stop being so vile and hostile to us.

In unrelated news, one of my favourite phrases we have in our household is “gosh, what a large reaction to a relatively small situation!” 😂

I think I was pretty clear that I don’t want to converse with you anymore because your posts are dishonest, deliberately misrepresent what others have said, ignore scientific facts, lie about what you yourself have said, and that to be honest I find your posts rather dull and unintelligent and repetitive.

If you could therefore stop tagging me with your inane and silly comments that would be much appreciated, as it’s adding nothing worthwhile to the discussion.

You’re welcome to stop replying.
It’s your lack of self control which is stopping you. Not me.

I have no responsibility in your choice to continue to tag and reply to me.

You might not realise the impact that many of the comments from this poster and other like her will have had on several of the autistic adults who responded to this thread and consider this a “small situation”, but many of us know otherwise.

My brothers have autism. One of which is profound.
I am allowed an opinion.

We can only control our reactions to things we don’t like, we can’t stop them from happening.

Rude

What a minimising, invalidating and patronising thing to say to people you love.

I’m also autistic with autistic dc and used to respond to these threads, trying very hard to be calm and polite. More for the benefit of others reading, to counterbalance things, rather than thinking I might change anyone’s mind. But the impact on me and my wellbeing was too much and I ended up stepping away from Mumsnet. It’s depressing seeing what our children are up against.

Or, it enables the people you love to work out when things really are worth getting upset about, and when really - it’s not that deep.

Which actually, is a useful skill to have, as it prevents you from losing your shit everytime you don’t like something. Which let’s face it, in life, is quite often.

For clarity, I don’t tell my disabled son that things are a small problem, but I do try and actively teach him to recognise what one is.

You know: can’t immediately have another yogurt - not that deep. In an unfamiliar place with people he doesn’t know - deep.

Apparently some of the American Government thinks autism is caused by vaccines or food or whatever (which by definition would preclude whatever the effect of that was from meeting the definition of autism in the first place because it’s a neurodevelopmental condition by definition that has to be present from birth otherwise the diagnosis of autism would be wrong!)

Yet again, I am reminded of this:

Signing out for now as I have no desire to be fed to the crocodiles tonight.

I’m sorry. I think so many are in the same position. Maybe it was silly to try to stand up for myself and others like this, I guess when it just keeps happening no matter what you say eventually you give up. 😟

Agree. These poor kids growing up with parents who just don’t get it at all.