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 One of the reasons given is that their autism would be seen as "mild autism" and support maybe withdrawn.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

On this thread, you have come across as really quite a horrible person. You and one other….cant remember the name….have been so unnecessarily hostile, horrible and rude. Most others from both perspectives have engaged in the conversation much better than you have.

Factual.

Over 91% of people used to believe the Earth was flat.

The Earth continued being a globe and there being lots of ignorant people didn’t change scientific fact.

Wow, I turn my phone off for a few hours and....

@ProjectHailMary many of your posrs refer directly to me as i'm the OP and I'm here now, for a little while anyway.

Let's put a few things straight shall we?

1. This post was intended to be goady, you may have taken it that way because you don't like the subject, i'm not sure. You cannot dictate what I want to discuss, you're allowed a different opinion that's fine and welcomed but you can tell me what to write and what not to write. If anything your post is goady and quite rude.

1. Please inform the NHS and all the wonderful doctors out there who are making these diagnoses that they are in many cases doing it wrong, while you're at it would you let them know that they need to change my ds' diagnosis report which refers to him as being "severely autistic". I'm not sure me sending them a link to this thread and your post will cut it. This would actually be really helpful, I mean if my son has been misdiagnosed I'd actually really appreciate knowing and would see it as a blessing. It'd also be great if you could tell them how to test for real genetic autism so we can stop everyone being lumped in together especially if they don't have it.

1. The views of the actually autistics. While those views are important in their care, they have no bearing on my son, his experience or his disability. They haven't been in his shoes or mine. So no I don't have to take notice of anything they say.

1. Whilst I'd love to take responsibility for the profound autism movement, I can't sorry, it wasn't me. It was The Lancet medical journal who released an report formally recognising Profound autism. It was written by quite a few professors with Phd's etc so while your saying it's pseudo sciece, i'm gonna go with the people comissioned to write an article in a medical journal rather than your "the science shows..." statements on mumsnet.

As for pitying my son for being parented by someone who communicates in the way I do, maybe you should take a look in the mirror.

This thread was quite helpful and interesting although it was derailed at times. Many posters have tried to engage with others with different views respectfully or at least with those intentions. If you don't like ths debate then don't join it but I will always raise questions about my sons diagnosis because it's in his best intetests. If you don't like it then scroll by.

Now who is being incredily rude ?

You are absolutely spot on, @ProjectHailMary and your posts are brilliantly written.

I am consistently dismayed by people who consider resource allocation a zero sum game when it comes to disabled folks.

I think children with complex disabilities ought to get the help they need whether it's respite care, equipment, the proper schools, transport, dedicated carers, etc.

I also think SENbetweener children ought to get the help they need.

It's demoralising to see parents struggling to care for their child with complex disabilities who then turn on other disabled people and accuse them of not being "disabled enough" because they are not like your child.

And then turning around to harp on about a "profound autism" diagnosis. What will that fix? Genuine question. Do you think that diagnosis will magically unlock a whole treasure trove of heretofore undiscovered funding?

Certain political parties (and mumsnetters) are already saying autism/ADHD/depression/anxiety/etc is overdiagnosed. That too much money is spent on that subset of people. I'm baffled by people who cannot extrapolate and see that, down the line, they'll view your "profoundly autistic" children in a similar light. Maybe they'll call it bad parenting. Maybe they'll go further as we inch toward eugenics, and say that your child is a "useless eater". That hey, maybe we ought to expand the Assisted Dying Bill to include those children labeled "profoundly autistic", instead of spending more money on people who are "economically inviable."

It makes me sick to think about it but looking back at Aktion T4, and disabled people being marked DNR during the pandemic without their consent, and then at the likes of RFK, I really fear what the world is becoming.

Definitely not silly. I hope you keep your passion and ability to articulate

I do “get it,” and that’s a fairly rude assumption to make.

It’s important that our children learn emotional regulation, including learning how to recognise when their upset is actually not proportionate to the situation.

If myself and his dad make light of that between ourselves, in what is otherwise an often stressful situation, that doesn’t require your judgement. It certainly doesn’t require casting aspersions on our parenting.

You’re perfectly within your rights to have this opinion.
I’m not going to start slinging around insults in response. ✌🏼

You have no interest in “getting anything straight” otherwise you wouldn’t be ignoring all of the statistically validated and peer reviewed academic medical research on the topic and instead spouting nasty little ignorant views that show you don’t even understand your own child’s medical conditions on Mumsnet.

I don’t need to “get anything straight” with you.

I had been waiting for you to return to the thread to see whether you reacted to my posts with engagement about the science and the way forward that would help children like yours or with hostility.

We now have the answer so the motivation for your original post is now perfectly clearly displayed by your response and had nothing whatsoever to do with any genuine wish to better understand autism as a medical condition and the scientific research and whether your proposal to invent new diagnoses had any validity.

We see you.

Agreed

Absolutely. It’s here for all to see.

Can we not gang up on people please, it’s not a good look.

😂😂😂

I disagree with you all.

That’s all. I haven’t once called you stupid or any other names.

I’ve just disagreed with you.

You can call me whatever you want. Then pretend to be the victims of bullying before all banding together again to start with the name calling.

It won’t make me change my mind and it won’t make me resort to your level of communication.

91% agree with you OP

😊😊

You’re a great mum doing an unbelievable job of advocating for your child in the most difficult of circumstances.

Don’t ever be ashamed of that or made feel less than because of it.

I agree entirely.

It’s sickening and what these people do not seem to be able to comprehend is that the future to which they will be condemning their very vulnerable children by entrenching this prejudice and attacking anyone who also has autism but not their children’s other difficultiies will be far, far worse than it is now. It is not acceptable for these parents at the end of their tether with services failing to take it out on other austistic people just because they are capable of communication and don’t have other co-morbid conditions.

They are shooting themselves in the foot and they are so angry at their situation (although their frustrations are of course understandable, but nothing remotely to do with other autistic people) that they do not realise that they are aiming at completely the wrong target and actually contributing to the rhetoric which will lead to further service cuts for their own children and make their lives far, far worse.

It’s sad that there are people this delusional and impervious to science even when it comes to their own children’s medical conditions, which you’d think would give anybody the motivation to at least learn something about it. I can understand many are exhausted (I am, myself!) but if they have time to post this bile on Mumsnet then presumably they have time to read the very basics of the medical research about their own children’s health conditions?

Apparently not.

I am so sorry for anybody who has read all of this who is autistic and all of the autistic posters who have tried to respond and been insulted and abused. There has been much kindness and understanding extended but almost all in one direction, as is almost always the case.

Manipulation?

You wrote a poat questioning my intent, questioning my parenting, dictating what I should and shouldn't do or believe then wait for my response. When I rightfully react negatively to your post, you use that as "look, I was right" moment.

I don't have to engage with you about science because I don't believe you will either engage in good faith or use real science.

Manipulation?

You wrote a poat questioning my intent, questioning my parenting, dictating what I should and shouldn't do or believe then wait for my response. When I rightfully react negatively to your post, you use that as "look, I was right" moment.

I don't have to engage with you about science because I don't believe you will either engage in good faith or use real science.

Thank you.

It's a shame because this thread was quite respectful and interesting until this drama.

I'm sorry you've been ganged up on. It's wrong and more a sign of their insecurities and inability to engage constructively than a reflection on you.

.

Just for clarity this is aimed @ProjectHailMary

I did notice that your response to the science, and how ‘profound autism’ was recognised in the Lancet Commission was completely ignored.

It was only released in 2021, so it’s hardly old information, and it does specify;

• Are at least 8 years old
• Require 24-hour access to an adult who can care for them
• Have a cognitive ability measured by IQ of less than 50 and/or non-speaking or minimal verbal ability

I have someone who covers all 3 of those - you?

Okay.

I’m just going to say one more time that it is not acceptable to tell the people raising autistic children that they know nothing about it.

We do know autism, it lives under our roof.

I do. There was also an aricle I linked earlier from the American library of medicine.
https://pubmed.ncbi.nlm.nih.gov/38423722/