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 One of the reasons given is that their autism would be seen as "mild autism" and support maybe withdrawn.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

Glad we got that established.

He literally could never as he couldn't organise himself to do so. He requires constant supervision while awake to keep him safe in the same way a toddker needs supervision to keep safe and 2:1 in the community because of his size. He doesn't have that level of understanding. If he broke a law it wouldn't be intentional and definitely not pre mefitated and there would be a safeguarding issue as he should be supervised at all times.

yanbu op, there is a huge difference between being able to function in society hold down a job, have children, drive a car albeit with autistic difficulties such as disliking social situations and finding social activities draining, sensory issues etc compared to a high needs autistic person who doesn’t understand their own bowel movements and would run into oncoming traffic, bodies of water etc with no awareness of danger. The examples are not exhaustive but you get the picture.

im the first scenario as an autistic mother of 3 who works and has some difficulties but I can get on in life, whereas you have my son who is the second scenario. Developmentally he is still a baby and we don’t know if he will ever be able to live an independent life, how is it fair that he is labelled with the same diagnosis as I am? I feel the most frustration with this when dealing with professionals, carers etc as when you just say oh he is autistic by the way they have absolutely no idea on what to expect because the spectrum is so vast.

they should bring back Asperger’s and rename it to minimise offence

Yes, if that is every day, 365 days a year, for many years - 10+ with no deviation.

Well yes you're right, but it does indicate that someone with profound autism could need support in any of those areas in comparison to someone without profound autism.

It would point professionals in the right direction for the necessary questions they would ask if they were to tailor support.

There will never be a one size fits all diagnosis as irrespective of whether it is profound or not, there will simply always be variance.

So if it changes every few years, they wouldn’t be autistic?

Again, autism is linked with being the victim of a crime, including being groomed to commit a crime. Imagine a supervisor who told him it would be ok to strip naked and shake his willy at a playground of 6yr old girls. Or a carer who said it’s just a game to chase another autistic girl and give her a big hug and a kiss. Or told by a ‘mate’ that the haribo are free today so he can just put some in his coat pocket.

You can commit a crime without the intention to commit a crime..especially if your carer/supervisor grooms you to do it.

Its not a joke that autistic people like your son are vulnerable.

And wanting low support and high support needs to be separate diagnosis isn’t taking anyway anyone’s autism or denying their traits it’s to ensure that those that aren’t able to live an independent life or make developmental progress can access desperately needed support and resources.

It’s a whole person assessment. It’s not based on my one example alone.

The problem is people will move in and out of whatever boundaries are set between profound and non profound.

And what would happen if you change something slightly one day?

My brother couldn’t be groomed into these situations because he wouldn’t understand any of the instructions.
He could certainly be abused but his level of autism is so profound that committing the crimes you have hypothesised wouldn’t be in his capabilities.

I feel I want to respond. Some parents of autistic children experience assault. I don't mean autistic people assault. I mean for some people - often with complex conditions and several diagnoses, the not coping with regular experiences of life can cause dysregulation which involves lashing out. Those kids are not always learning disabled. Some have never got a diagnosis. The conditions can interact very individually.
Those children require special care and attention from multiple perspectives from an early stage and crucially recognition of their communication needs. This is what will eventually minimise risk. There are lots of them. I don't feel the language of ' using it as an excuse' is helpful. I do feel it should draw a lot more support, assessment and provision a lot earlier than it does, with regular meetings and check ins. Not all parents are natural advocates and many are ashamed. When parents report the problems they are sometimes just left to it. That shouldn't happen.

Yes, it would tell people the person needs and will always need a significant amount of care. Although if by ‘those areas’ you mean the things I mentioned in my pp, an autistic individual who doesn’t meet the suggested criteria for profound autism could also meet some or all of them rather than it just be in comparison to someone without profound autism.

Fair enough, but others like him could and have been by their carers.

He wouldn't understand any of those statements/ instructions?!

No. Others “like him” would also be unable to follow any kind of instructions like that.

Just to add I am extremely aware how vulnerable he is as he was subject serious safeguarding incident with two of his carers. He was neglected not abused, they were fired and DBS informed so that itwill be flagged on any searches.

Edited as it didn't word quite right

I meant to say vulnerability isn't clear cut some autistic people are particularly vulnerable to be groomed because they would be seen as less in need of support because they are seen as understanding more but this is what makes them more vulnerable

Christ alive

No wonder you edited it 😳

Well yes I'm only human and we can all write something and the. Realise it isn't what we mean when we read it back.

True but I think if boundaries reflected the very high care needs eg, lack of continence, lack of awareness of danger, inability ability to communicate , self harm, frequent and extreme displays of distress etc I don’t see how people could dip in and out. You are either continent or not, you either understand you shouldn’t jump into a lake or not these things surely wouldn’t be changing on a day to day basis

Do you not think that parents of children with these support needs have not tried everything possible to support their child's communication?

My child is very similar to this poster, and has zero interest in visuals or sign language, however due to my extensive efforts to introduce it when he was a toddler and it was abundantly clear that he was non verbal, I'm pretty good at it.

These kinds of comments are so shaming for parents.

I too will be so happy if he learns to make a sandwich and can indicate if his carers are hurting or abusing him.

My dc have all of those bar incontinence and all fluctuate. They can be very severe.

Continence can vary in some cases. Some children can be just very delayed in this area. Others may always lack continence and others can become incontinent

Same with danger, this can be environmental so safe in known environment but unpredictable in unknown environments. Safe when regulated unsafe when dysregulated

This is just one example why creating boundaries is so problematic.