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 One of the reasons given is that their autism would be seen as "mild autism" and support maybe withdrawn.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

You can discuss it. You can’t tell the OP to not discuss it.

@ProjectHailMary Thank god for you and your posts on here is all I can say.

From an autistic (diagnosed) adult. Thank you.

See point 11 of your post.

@ProjectHailMary

I think any of those here, including myself, can understand that our children have co-morbidities that worsen their disability.

Kanner talks of LFA which many of our children have the markers of. I appreciate we don’t use terms like low and high function anymore, but if we’re going back to “source,” it is there.

What nobody has the right to do is tell either myself, OP, or any other parent that they’re not aware of their own child’s disability, haven’t fought for them and had those conversations with paediatricians/NHS etc, and haven’t considered simple interventions like PECs. Or, as you have above, tell us what we should and shouldn’t be doing for our own children.

If you’d like to us consider our children as more profoundly disabled, rather than more profoundly autistic - fine, I’m not going to argue with science.

But I would ask that with that in mind people don’t argue that the presence of that “profound” is enough in itself, rather than try and categorise the “more disabled” with the “more able.”

There have however been lots of interesting comments from other posters around shared factors such as birth complications and health issues. My own son was a high risk difficult pregnancy, the heartbeat was lost during birth, and he has had gastro issues for his whole life. It’s not unkind or unacceptable for posters to question if those links between children could represent a similar link to their disabilities.

I do feel that your posts about how pointless the thread is, what the parents of profoundly disabled children should be doing and who’s advice we should take are fuelling the fire of putting down the parents of vulnerable kids, and have a “Be Kind” attitude to them. We don’t have to take advice from people unqualified to give it, and we don’t have to accept explainers like “use Makaton” or “ask a doctor why your child is so disabled” when they’re both blindingly obvious.

🤣🤣 go on then, educate us

It’s taken a big toll on me typing all of that, energy that I could little afford (as I also have two autistic children to care for!).

So thank you very much for this message. It means a lot.

I did my best because I think this needed to be said and I just hope people will listen and work together on a productive way forward. Trying to “categorise” autistic people is not it and won’t help anybody.

Sadly, got to go an do the day job now (economics, btw).

Others disagree.
Which is sort of the point of Mumsnet.

Yet you were trying to tell other people not to discuss it (me) and that I shouldn’t have replied to the thread because I disagree with the OP’s point of view and responded as such to the specific question she’d asked in her OP.

You’re on a losing wicket here I’m afraid. Autistic people can spot injustice and hypocricy from a mile away or more and we hate it more than pretty much anything else so you won’t get away with that kind of disingenuousness on a thread with so many autistic posters who will have noticed it immediately.

Anyway, I’m out for now. Responsibilities. Sigh.

My son was two weeks late ,he waa back to back and ventouse delivery
He has a chromosome deletion beleived to be the underlying cause of his autism and complex disabillities
I dont think there is one cause of autism its so varied.

Remember this one, @Elbone ??

“You can’t tell ….. not to discuss it”

allegedly.

Mumsnet head tilt.

You told OP she shouldn’t have created the thread.
I said, if you struggled so much with the topic, perhaps you should avoid it rather than try to shut the discussion down.

You seem to have some kind of delusion that you own autism. You don’t.

Yeah.

I’m sorry it bothers you so much.

Just because you struggled with the topic doesn’t mean it shouldn’t be discussed…

That for me is the interesting thing and the most unforgivable thing that most stats should be gathered to assess this type of stuff.

For me the reason tk divide into categories is that frankly want this to stop. Imagine if we could reduce ASD by 50% or significantly lessen its impact

At present the implication form some social media is that too much ASD is being diagnosed when perhaps the implication should be that 21 century medicine is still letting parents down with care that could be better. With appropriate care eg therapies at an early age or vaccinations or better maternity care things could be better.

For instance I believe that some counties are now giving mothers the CMV jab but why not here?

Maybe for instance if we learnt that lots of kids with glue ear will therefore develop costly ASD they might put more resource into ENT seeing kids quicker/ getting adenoids out and better antibiotics.

Maybe if they learnt that poor hypotonia / moto coord had a lifetime impact with the development of ASD they would put more resource into OT

As for them profoundly impacted as birth ( not necessarily profound ASD but profound disability) what research is happening there?

Agree - shared complications and birth issues are precisely the type of additional issues that could cause profound disabilities for any child or be misdiagnosed as autism when there is in fact no presence of the brain structure/ genes for autism at all, but it also is clear from the data perhaps autistic children are more vulnerable to this as they are to many things: autism seems to be a magnified “evolutionary bet”: the alleles that relate to this like those that also relate to some other conditions, when tested in different environments show that children WITH these alleles come out far above peers when in a positive environment (i.e. the magnitude of the positive response to a positive environment and the positive effects this creates is far GREATER), but are far WORSE affected by anything negative (environmental, viruses, negative social contexts, poverty, bad parenting, bad school experiences, negative interactions with peers etc, etc - these have a FAR greater NEGATIVE effect on autistic children than their neurotypical peers subjected to the same): in effect, it is like a magnifying glass.

This creates a very strong argument for why these children should get a LOT of support, not just morally, but economically because demonstrably the same amount of money spent on the same amount of support has a greater effect on their outcomes. And not providing it has a far larger negative effect on their outcomes than that of a neurotypical child whose circumstances are equal in all other respects but does not receive it. This has also been evidenced through mutliple studies.

There is very strong genetic research for this.

It also explains why the genes for autism (and other - totally separate - genes that predispose people, for example, to depression or some other things we’d consider to be negative) have spread so widely: these genes would not be so prevalent unless there were also linked to effects which are beneficial for human society. For each one of these identified to date (a gene initially identified as linked to something negative but very widespread so therefore inexplicable for it to have persisted and spread to this extent per evolution, there is also an evolutionary upside for society as a whole to this gene being present, otherwise it would have died out, not spread widely). I have studied this in detail.

What is not understood yet, as I have tried my best to explain, is that some of these genes when interacting with specific other genes or random mutations or other environmental effects cause severe disability. We do not yet know why that is the case. We know that overall (as evolution has determined, or they wouldn’t exist still at all!) that they benefit human society more than they harm it. What we do not know is why there is this negative interaction with some other particular genes. But that does NOT mean that the genes that cause autism are responsible for the people who have these negative interactions of their autism-related genes and other genes and their profound disability “is autism”. It isn’t, as evidenced by Einstein, Mozart, Dirac, Hopkins, Tesla, Newton, Warhol, Burton, Darwin himself (!), Cavendish, Dickinson, Burton, Gates, Michelangelo, Spielberg, Franklin, Van Gogh, Edison, Hitchcock, Jung, Orwell, Austen and many, many more.

You only have to look at human history to understand why human society would be nowhere near where it is without autistic people. It is the classic dandelions and orchids phenomenon).

I agree with a lot of what you are saying about co morbidities but as it stands most profound autistic people only have this diagnosis because of the whatever support and healthcare services they have available to diagnose. There should absolutely be more research and testing to diagnose anything else at play.

However autistic adults who are able to communicate, advocate, and live with a degree of independence simply don’t have the same lived experience as profoundly autistic individuals who may not be able communicate, may have significant intellectual disabilities, and require lifelong, highly supportive care. These are not just different levels of the same experience they are completely different realities. Being able to access a forum, write posts, engage in debates and reflect on your internal state, advocate for yourself already places someone in a vastly different position from a child who is nonverbal, cannot express pain or needs, may not understand danger, and is entirely dependent on others to survive. It’s a massive difference in how the condition is experienced so it is not right that they speak on behalf of those in more need.

Autistic adults without intellectual disability can and should speak about their own experiences, but it is not appropriate to position themselves as a voice for “profoundly” autistic individuals. They cannot and and should not try to represent an experience they do not share just as neurotypical people cannot speak on what an autistic person experiences. I am autistic myself and I would never put myself in the same category as the level the op is speaking about just because share the same diagnosis and have some similar traits . I can recognise that my autism affects my life negatively but it is simply not comparable.

I am bothered by and struggle with your hypocrisy, not the topic.

It is you that tried to prevent the topic being discussed and told me that I should not be posting on the thread. I have not said that to you.

“please stop starting these extremely unpleasant and goady threads. It neither helps your children nor any other autistic person”

You told her to stop talking about her experience.

I’m telling you that if her experience and opinion is so difficult for you to read, then don’t read it.

That’s not hypocrisy

No, I did not. I said what she wrote was unscientific and incorrect. I have specifically stated that a discussion about how to support the different needs of people with disabilities is important and made suggestions about how best to further research into the causes of profound disabilities but also pointed out that her suggestion in the OP - the entire point of the thread per her OP being her asking for opinions on this - to create pseudo-scientific fake diagnosis categories would be counterproductive socially, immensely damaging, and is based on a complete misunderstanding of the nature and cause of her child’s medical conditions per the scientific research.

I have repeatedly stated that people should work on a good way forward with better research and support for all autistic people.

Where exactly have I said that I “own autism”?? What does such a phrase even mean? I literally don’t understand what on earth you are attempting to communicate now, other than extreme anger, it seems, that someone has dared to intervene by mentioning actual statistically validated and peer reviewed medical research findings and your objection that apparently this isn’t ok because it might not correspond to “how the OP feels”. Not that you and your ilk have shown much concern for how anybody else might be made to feel by your factually false comments about a medical condition of which you clearly know not much at all.

I have tried to be constructive and build bridges. Your posts are without exception the entire opposite so I have no wish to engage with you further: please stop tagging me or responding to my posts now.

I literally responded to the question the OP wrote in her post at the start of the thread. You then told me that I should have done so, and have then tried to accuse others of stopping people having this discussion. 🤔🧐

If you still cannot comprehend the hypocrisy and lack of logic in your comments then I’m not sure there’s any way to help you. 🫠

See post above where I quoted exactly what you wrote.

There is a very large difference between:

1. starting goady threads encouraging additional prejudice against vulnerable people and spouting pseudo-scientific nonsense that contradicts all medical research, and suggesting that your unscientific opinion should be inflicted on the whole of society and it should be mandated for doctors to follow this and ignore the scientific and medical facts; and

2. Telling someone to “stop talking about their experience”.

Nobody did 2).

Stop bothering me with your ridiculous nonsense now, please.

And that is why I believe it needs to be categorised differently from just autism with either more testing and diagnosis’s or if not with at least some acknowledgement that it is a higher level (of support and care needs)

Gosh and the Government think that a couple of months research will produce a comprehensive report on ASD ADHD etc

I think that they need to have a conference with the best ASD minds to understand it all

Of course their experiences and care needs are very different. Nobody is denying that.

Nobody is saying that children with profound disabilities (who may or may not have autism as part of the combinations of conditions causing that) do not need much more care and support than a child or adult who only has autism.

What people including me have tried to explain is the scientifically evidenced fact that autism ALONE does not cause profound disability of this nature with low IQ, very low cognitive abilities preventing them ever learning any type of communication or language, no awareness of their surroundings etc. That is NOT autism. It may occur sometimes when there is autism AND another condition, and is caused by the combination of those conditions. But autism itself, on its own, categorically DOES NOT CAUSE this type of profound disability (per the way that term has been used here).

You could legitimately call these children profoundly disabled, as a result of autism and something else, but there is no such thing as “profound autism”. And this is insulting and minimising to people who have autism and DON’T have whatever other conditions are causing some people with autism and other medical conditions to be so profoundly disabled in ways that autism, on its own, would not.

Nobody is suggesting the two are the same. Nobody is suggesting that the struggles or care needs are the same. What people are telling you is that:

1. These people are profoundly disabled, not “profoundly autistic” because the things that makes them profoundly disabled are not caused by their autism because these particular characteristics are not caused the brain differences and genetics that are common to all autistic people.

2. The disgusting attacks on autistic people who do not suffer from this compound effect of autism plus other conditions and pretence that therefore they are “less autistic” is absurd because it is not the autism that is causing the difference between the two populations, rather the effects of other conditions combined with autism;

3. That it is unacceptable for people who aren’t autistic to make such ridiculous and abusive comments all the time to autistic adults just because they don’t also have co-morbid conditions that have resulted in low IQ/ inability to communicate and that those doing so are doing their children no favours because they are simply increasing the stigma against autistic people as a whole with these ridiculous unscientific comments;

4. There are much more productive ways for people who are suffering and struggling to support these children to try to make things better for them than try to attack other people who share one of their medical conditions and ignore all science on the matter. Austistic people who DON’T have cognitive impairments already get basically zero support. They are not taking away support from children who have profound disabilities. You’d be far better off standing together with autistic people who have great sympathy for profoundly disabled children who also have autism and standing together to ensure everyone gets better support (although of course not a single person has stated that the support required for a child or who also has learning difficulties and IQ and can’t ever be independent is the same as that needed by autistic adults who ONLY have autism and therefore don’t have the IQ impairments, etc).

I feel, as so many times in my life, as though I’m speaking a foreign language to people. I think I’ve expressed myself factually, perfectly clearly, using the actual definitions of the words I have written, and yet receive a barrage of posts claiming I have said things I haven’t said that they’ve invented (as another autistic poster observed happened to her earlier in the thread).

Sometimes I do wonder whether it’s really us who have the communication problems and difficulties with understanding language, or in fact in reality it’s the other way around and we just keep being told we’ve got it wrong because there are more of you that invent your own meanings to things that we haven’t said and then start trying to argue with your own imaginations, and simultaneously expect us to read your minds because you can’t write what you actually mean with the words that exist which make it perfectly possible for you to do so, and instead expect us to read your minds.

It’s all very tiresome and I’ve had enough now. Many, many autistic posters have tried to engage and provide some reason and understanding and empathy to bridge the gap on this thread and almost without exception its been met with hostility, disingenuously or outrageously deliberate misrepresentation. No wonder people largely don’t bother to respond anymore because it’s always the same. I just pity any children with autism being parented by people who communicate in this manner, it would be absolute hell.