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 One of the reasons given is that their autism would be seen as "mild autism" and support maybe withdrawn.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

I presume your relative has a chromosome microdeletion ?
My son has 16p13.11 microdeletion thought to be the underlying cause of his autism and learning disabillties your right two people wuth the same or similar deletions can vary massivly from few if any difficlties ,to profound disabillities
Thats why they are not treated the ssme as it goes of need not diagnosis

If anything those with autism and no additional learning difficulty are let down the most. Many get nothing and are left to rot, be abused,end up in inpatient, prison or worse with no care or treatment at all let alone adjusted informed care.

Sorry I meant profoundly impacted by autism

As in regardless of clinical classification people can be impacted in various ways.

I do think there is a big specific gap in services in this area from.whrn the children are young. However this is part of a wider pattern of gaps also as testified to by others on the thread.

One example I feel is relevant is down syndrome.

Down syndrome can present in many different ways.
At the one end of the spectrum you have TV presenters and sports people and the other end adults that are double incontinent, needing 24/7 care

And everything in between. Should we be changing the diagnosis for those at the one end?

Alongside this those with DS can have other diagnosis alongside deafness. Vision loss, hole in the heart etc etc

So with DS you can have so much difference in support needs but it still comes under the umbrella term of down syndrome

Autism is the same why are autistic people being targeted.

We are stronger together - we shouldn't fight amongst ourselves over who is most deserving of support we should acknowledge that support needs vary but every child and adult should have the support they need to reach their full potential. The potential will vary per individual but every individual should still get it.

But while we argue over the name and who should get diagnosis and who is more deserving the actual children and adults who need support get their needs ignored.

That was such a wildly offensive post! Thank you replying with such eloquence.
My brother is in a home, having his nappy changed, with no language.

I wish he could sit on Mumsnet typing. I wish he could answer his own name.

I wish my dc who can type out their own names hadn’t been near death multiple times and suffered abuse and other extreme difficulties due to their autism but there you go.

One of the conditions I have, you either have a diagnosis of congenital or acquired. (From childhood or adulthood) There's something like 50 different sub types. I only know my sub type because I was taking part in research

But Down Syndrome will always be Down Syndrome as we know the cause is an extra copy of chromosome 21, and it’s that which causes the symptoms.

The division of presentations into four quadrants was only the staring point.
This is the important thing about the study:

For example, children ... damaging de novo mutations — those not inherited from either parent — while ... group was more likely to carry rare inherited genetic variants. While children in both of these subtypes share some important traits like developmental delays and intellectual disability, these genetic differences suggest distinct mechanisms behind superficially similar clinical presentations.

In other words, there is strong evidence of genetically different types of autism
Not levels - different types with different genes.

So much more research is needed.

The issue is that defining who ‘has severe autism’ is subjective and the detailed reports given generally outline the support and person needs on an individual and tailored level so do address ‘individual need’.

MY DD is AuDHD, at university, genius IQ and gifted artist - but utterly incapable of functioning independently and we fear for her life and well being on a daily basis because of the co-morbidly arising MH issues, including suicidal ideation since adolescence. She is very very obviously autistic to the man on the street. She may as well wear a neon light, but she may end up with a masters, PhD. She has no real friends and is very isolated as a result. She will likely never leave home and have to move into assisted living when we die. We worry every second of every day about her and it has impacted the MH of every family member.

My DS is also ASD with ADHD traits (awaiting reassessment for the latter) and is possibly just as impacted, especially by the anxiety/focus aspects of his ND (nearly failed GCSEs but is being supported through A Levels, and expected to get A/A* IF he doesn’t have an anxiety attack or migraine… he is in bed with one now). But the average man on the street would not notice and most people - teachers included, initially - would not even consider for a second he is ASD. He is a gifted and talented masker and just deemed to be very much a physics and gaming nerd. Has friends, a girlfriend, is well-liked. He struggles to read emotions in others or even to recognise his own, so burns out regularly [eg, those migraines, despite copious amounts of anxiety and migraine preventative meds]. But there is no doubt that without the support he has had at his current college, he would have ended up in a PT shop job on PIP/UCs, ie without his detailed diagnostic report and IEP. We dread him splitting up with his GF as this could be catastrophic.

My half brother has never got a qualification or held down a job for even one day, his autism impacts him in his ability to function outside his home so severely. I have no idea what will happen to him if/when his parents die as I have enough on my plate if I am honest.

I am also AuDHD and function entirely due to the unconditional love and acceptance of my DH, who was wealthy enough I have been able to avoid a FT employed job and just tinker around in voluntary roles and self employment as and when. I have a life long history of anxiety, recurrent depression, autistic burnout (misdiagnosed as ME/CFS at uni) and struggled to hold down jobs for longer than a year or two before moving to the next one (something that might have been managed better had I had a diagnosis and individual report).

The new levels are a useful measure - but they can’t be fixed ones. I would say they ought to be like the DEFCON numbers - we move through them continually depending on context, current life stresses, mental health, relationships. The support we need at each level should therefore be a fluid thing.

We are stronger together - we shouldn't fight amongst ourselves over who is most deserving of support

Very disabled people who can’t speak and are highly vulnerable and unable to be left alone for a minute are the most deserving of support.

This shouldn’t be at all controversial.

And autistic people have always been and always will be autistic. They existed before the name and diagnosis was attached and they will continue to exist if the name remains autism or it is renamed or even if they say it isn't a thing.

Why are you trying to make this a competition?

People with profound autism will never have the opportunities as those without. They won’t even get the chance.

🤣”Why are you trying to make this a competition”, don’t think I started that do you. Frankly the fact anybody can dismiss the suffering of autistic people because they can type their own name is pretty appalling, abelist and ignorant to boot.

So the rest of them should be allowed to suffer in silence until they die. Ok then

Everyone should have the support they need.

But the is no pathology to autism.

It’s based on a questionnaire of behaviours. Not a medical, scientific diagnostic test with 100% hard proof.

The fact I even have to point this out is ridiculous.

That doesn't mean it doesn't exist or that autistic people shouldn't get the support they need

Who is dismissing it?

Those with profound autism have much more need of support than those who do not.

That’s it.

That is an absolutely ridiculous inference.

Nope

Both are deserving of the support they need. The support will be different but both groups should get the support.

😂😂Who has said otherwise?

Saying one group needs much MORE support than another because their needs are wildly different, is not saying the second group shouldn’t receive any at all.

“People who can’t speak/ communicate, toilet themselves and need 24/7 care need more and separate support to those who do not”

”So those who don’t should be left to die?!?!?”

Honest to god. This thread is utterly pointless with such nonsense.

You said that some are more deserving of support

Neither are more or less deserving

Both should get the support they need.

The difference is without support those you seem less deserving will become more incapacitated and less functional

It's like saying someone with no legs is more deserving of a wheelchair than someone who paralysed as the paralysed person has legs so has more options than the person with no legs.

Talk about a miss quote

You are completely unable to understand others view