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 One of the reasons given is that their autism would be seen as "mild autism" and support maybe withdrawn.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

Having lost EIGHT jobs in 30 years due to my [sarcasm alert] self-diagnosed high-functioning [/sarcasm alert] autism, you are being unreasonable.

At first if you meet me your reaction would be that I'm not autistic. Later you might find me odd or annoying. Later still you might dismiss me because I'm very direct and appear challenging to you. I have held quite "high-powered" jobs, but in the end they get rid of me and it takes years to get back into the workplace.

Currently I have about six months before I lose my house because I can't pay the mortgage until I get another job.

I wish my diagnosis would happen soon - another five months before the assessment. Comments like yours are extremely unhelpful.

He is a child. We were all once children. I’ve had 50yrs of help compared to your child. Comparing us directly is like acorn to oak trees.

Also, just as an aside, my son is severely disabled. Half his brain has calcified. Anyway, he's a really bright bloke. Very intelligent. His problem isn't intellectual, it's expressive. He's like the walking example of the difference between a learning disability and a learning difficulty. These are two very separate things but unfortunately most people use them interchangeably.

In other words, someone who's 'profoundly' autistic has a learning disability (and there's already a diagnosis for that), whereas someone whose autism affects them in differently has learning difficulties (and there's also already a diagnosis for that). Not sure we need any more diagnoses, perhaps we just need to act and care properly on the basis of the ones we already have.

Love, you’re in different forests.

I don’t for a second doubt that your needs present you with challenges, and I don’t necessarily think they’re less challenging.

But they are different.

The other threads are specifically about this. It's been done to death.

Please stop.

It’s isn’t avoidable, I’ve been where your DS is, although back then there was much less support, I was just physically restrained and doctors did whatever they wanted to me,

Your point is about a child now. I am sharing my existence as a child then.

I'm simply suggesting she join the existing discussion.

The post you've written is articulate, you have managed to communicate your point very well. You've also managed to navigate your way on the internet or an app to this thread. The people i'm trying to describe wouldn't be able to do that at all. This is some of the difference I'm trying to convey.

I am sympathetic to your plight but you CAN work. You’re typing this message. You are very very very far removed from the children discussed on this thread.

I’m late diagnosed in my 30s. Testing is fairly similar, in that you have to show difficulties in childhood and be significantly impacted. They will also look at communication and how you interact during the face to face assessment part, and it can be pretty obvious from how you communicate and body language, learn as in children. For example I hurt myself when I get very stressed, it’s one of my stims. By the end of my face to face assessment my arms were bleeding and that was obvious to the assessor. I’m pretty sure that doesn’t happen to most NT people in a situation like that.

I agree. Atm there is nothing to differentiate between the different care needs of people with autism.

People with high needs tend to have multiple diagnoses and there needs to be a name for that so those people's needs are taken seriously and and so thst people with "just" autism aren't treated as though they're not really autistic because they're not as high needs as someone with autism as well as other things.

Its not fair on anyone and no one is receiving the support they deserve.

The amount of times an autism parent has heard, ‘have you tried…?’ Followed by the most basic, patronising thing.

My personal favourite was when a woman stopped me in a park to tell me to just give him carrots.

So where we you at 16 then are you really saying at 16 you could only only communicate on a very basic level had no undestsnding of the world arond you
Have zero concept of the need to keep your self dressed ,had no awareness of danger smeared faeces screamed loudlly all day every day ?

It's not about being autistic enough it's about different needs. A teenager dealing with identity is vastly different to a teenager who can't even introduce themselves in any form of communication. Recognising those differences has to be helpful for all?

I think one of the issues is that it really is a spectrum so where would the cut off be?

Yes there would be obvious examples at either end of the spectrum but there is no clear definition

Is there anything wrong with using other diagnoses or descriptions along with autism.

Eg severe autism with high support needs, severe learning disability & unable to communicate verbally would clearly differentiate .that person from someone with autism with low support needs, some communication difficulties but able to communicate verbally, of average or above average intelligence.

I think there will be syndromes identified with the more severe types of autism which will then be named separately.

Look, I don't fully disagree.
People with autism who have severe and profound learning disabilities as well do have different support needs.

However I am not fully convinced that it's the autism that is more severe. I feel like it's the whole package.

Some autistic people who do not have learning disabilities are immensely affected by their autism. My adult child being one of them. Anyone who tries to claim that my DC is more "mild" in their autism because they can speak can bog off, frankly. DC may have an encyclopedic knowledge of a range of scientific and philosophical subjects, but at 25 they are entirely unable to look after themself. They cannot manage their financial affairs, only get any benefits because I claim on their behalf, don't spend a thing or leave the house without their carer. Left alone without support they would probably die, tbh.

I agree that some people who are entirely functional have diagnoses. My other youngster identifies as autistic and probably might meet the criteria except for the significant impact on daily life bit - they have age appropriate independence skills, managed uni, able to work. So we never pursued diagnosis for him.

I think the subject needs looking at but I think we need to separate out:
The impact of the actual autism
The impact of cooccuring conditions - such as learning disabilities.

Then scroll on by....

I know that. I unlike the poster ranting on here am aware that there is a huge difference.
My point wasn’t about severely autistic people. It was about teenagers in mainstream education.

It is avoidable. If healthcare professionals listen rather than assuming they know the needs of anyone with autism, then we don’t need to go back again and they don’t need to pre assess.

This is actual lived experience, so you are incorrect I’m afraid. It has happened.

Not everyone with autism has the same needs or the same level of need. You assume you and my DS are alike when you’ve never met him, which is part of the issue with people’s understanding of autism that many are pointing out.

I am sorry nobody advocated for you as a child though, I can’t imagine how hard that must have been. I hope you have better support nowadays.

That's interesting, thank you.
Do you think his early diagnosis has helped to prevent MH struggles? As in has it provided a pathway to support and helped you to understand and support him better?

I was only diagnosed last year with AuDHD and my childhood was very lonely and I always wondered why I was unpopular and seen as weird and bullied all through high school. Its not really surprising I have struggled with depression and anxiety!

If I'd been diagnosed earlier, perhaps I would have understood myself more, perhaps my parents could have advocated for me more and perhaps I could have identified triggers for me much much earlier so I wasn't going round permanently stressed and not understanding why. Perhaps I could have forgiven myself for not having the executive function of the average person and accepted a less than perfect house.

It came across as defensive. You didn’t sound like you were signposting her to another thread. It sounded like you wanted to shut down another post on the subject.