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 One of the reasons given is that their autism would be seen as "mild autism" and support maybe withdrawn.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

It’s certainly a level of entitlement that takes some getting used to.

Someone once asked me if I’d considered a specialist school, like I’d shoved him into mainstream, left him there til Y4 and just hoped for the best 😂

BSL requires no pen and no paper.
I take it you nave not tried any sign language then.

I've only seen profound autism suggested and supported in journals etc as a way of breaking the diagnosis.

I don't mind if they rename both of give more distinct discrete diagnosis but I do think there needs to be a difference in diagnosis between those with the most needs to those with the least or with mental health needs or those who describe themselves as having fluctuating needs.

Neither can my DS with SM. This know-it-all approach is very irritating.

Why does he need to be verbal? Plenty of deaf people get by being nonverbal. Why the focus on it?

No they don’t.
There is zero mention of brain scans on the NHS autism diagnosis assessment page.

No they don’t.
There is zero mention of brain scans on the NHS autism diagnosis assessment page.

There are diagnostic tests for Autism.

These are look at developmental history, behaviour, and communication.

Unless you think it's all bullshit?

I agree. I think most children that I know who have severe autism have other diagnoses too. Some have learning difficulties, global developmental delay, non verbal or speech delays, dyspraxia, intrusive thinking patterns, emotional regulation disorder, ocd or andhd alongside Autism.
My friend’s beautiful boy has a form of a giant disorder alongside severe autism, it’s hard going for her.

Still no indication that you have even tried it,
Its been lifechabgjng fir many parents I know,
kids going from speaciskidr schools to mainstream.

I agree with this.

You are being unreasonable, OP, as you're speaking about something you don't seem to understand.

Do you really think "high functioning" autistic people can communicate their needs clearly and be understood well enough to receive the support they need? Have you met one?

Some autistic people have learning difficulties alongside their autism. You're mistaking that for autism. If anything, they express the pain of being autistic better than we do because they aren't constantly repressing it. You know how distressed they look and act when it's noisy? That's how we feel inside. It's the same.

Their learning difficulties give them extra struggles, and they should receive support for that, of course.

This has been discussed a lot recently because of an interview that Uta Frith gave to the TES magazine in March, suggesting that the autism spectrum has become so wide that it’s reached the point of collapse. She has years of experience studying autism and I was really sad to see how abusive some people’s reactions were to the points she made.

The interview is here:
www.tes.com/magazine/teaching-learning/general/uta-frith-interview-autism-not-spectrum

They do exist though, just look it up on pubmed.
NHS way is not the only science out there.

How do you test a non verbal 5 year old in the way you would a highly articulate 50 year old professional? Can you go into more detail?

In my experience children with a severe learning disability do sometimes have an additional diagnosis. (For example global development delay and autism.) Neuro-diverse is also coming into common language now and I think that hints at being on the spectrum without a severe learning disability. (Not officially but I feel that's how it's being used.)
I agree that people want the language to differentiate respectfully and it's not quite there.

They obviously wouldn't be tested the same way.

Im not focussing on it you are with your patroising advice like no parent of a severly autistic child may have thought of sign language or pointing at things.

My son has an autism diagnosis and has no mental health issues. He is not depressed, anxious, schizophrenic or manic. He just has autism.
He is quite comfortable having autism and we've known for a young age he has it. His school has been good in the main, lots of his friends and family are neurodiverse, and it's something he has been told isn't a bad thing just like his dyslexic, brother, he will find something harder but also actually is better at other things. Probably because of his autism (maths, problem solving, hyper focus, memory, chess, following instructions) but will struggle with some things ( Nuance, sarcasm, changes of plans, being too literal, making friends in some circumstances).
He has no mental health problems though

We’re talking about different children.

Mine (and @x2boys ) children won’t be going back to mainstream.

That is an actual impossibility, no matter how much “BSL” you try and give them.

You’re coming off as very, very condescending.

What part of 'cannot communicate at all' is it that you don't understand?

So different tests, different symptoms, no pathology and you’re confidently declaring they have the same thing? How?!

YABU. A shiny new separate diagnosis is not going to suddenly unlock an outpouring of support, and it's stupid to believe that the rise in self-dx has led to severely disabled people not being "catered for". Correlation is not causation.

The social fabric is fraying everywhere. Look at the elder care situation - frail people kept in hospital because there's nowhere for them to go. Carers run off their feet, cutting down packages because there's not enough funding. SEN support under fire at schools.

A new diagnosis isn't going to be the panacea you want. What it WILL do is more easily flag up the "more costly" disabled folk, and that should be absolutely fucking terrifying to anyone who's studied history and kept up with the politics of parties like Reform.

That is such an ignorant statement. A non verbal autistic child has a lot of frustration attached, many don’t have the ability to learn sign language, the sheer frustration of not understanding how to communicate cannot be measured, it often results in Tourette jerks and stimming to the point their brain is loose, unlike a deaf child who cannot hear. 😳

I used to care for a young woman with learning disabilities. I quickly identified that she was also autistic. Her brother was at university and he appeared to be autistic. The dad was definitely autistic. My client needed help, whereas the other two family members didn't. My client didn't need to mask. The other two family member did mask. I only identified it due to being autistic myself. I don't know if any of them had even been diagnosed. Still autistic though.

It's a spectrum not a continuum. Neurotypicals only like us to be labelled high/low functioning so they can classify us. The so called high functioning people suffer from more mental health problems, which aren't actually much fun for us. All autistics have lower life expectancy which isn't fun either if you enjoy your life, which a lot of us don't.

You dont my son was diagnosed at three at a panel after a series of assesments by all rhe professionals involved.