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 One of the reasons given is that their autism would be seen as "mild autism" and support maybe withdrawn.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 don’t agree with self diagnosis, and I don’t think it is widely accepted apart from in communities of mainly self diagnosed people. But I do see how levels, as they are currently, can change day today, maybe not from level 1 to level 3 but level 1 to level 2. I have an ASD and ADHD diagnosis and I would probably fit in the level 1 category if Uk had levels, but i do still need support and cant live by myself (tried it for a short time and it didn’t go well), even though I have a job, DH and DCs.

How is it the same thing?

Let’s pretend autism has not yet been identified as a condition. 2 people present to you. One highly intelligent and articulate and independent. The other in nappies, unable to speak or do anything for themselves.

How do you confidently draw the conclusion what they have is the same thing?

@G2468 I agree 💐

I agree, but I have skin in this game, my dd was diagnosed in 2001 aged 2 then re diagnosed in 2009 in the uk, though like many her skills are all over the place. She developed language late, aged 4, she is musically gifted, she’s highly intelligent, she can form relationships and has married but has multiple complex mental health issues, selective mutism and can’t hold down a job

Whilst i agree
My owm severly autistic chilld does get a huge amount of support that isnt available to those with less defined needs
My son gets four over night ,s a month respite ,at least a day a week every school holiday in a special needs holiday club and every other saturday in the same holiday club for five hours
We have supprt from his special school,learning disabllities team ,special needs social worker .

There are actually quite a lot of disabilities that are “opt in” as you put it.

many people who others might see as disabled don’t see themselves as disabled. Most research on disability specifies how the term is being defined for exactly this reason.

for example some people who are deaf do not consider themselves disabled and will get extremely stroppy with people who try to say they are.

etc etc.

Speaking isn’t a proxy for intelligence, nor is it the only firm of communication. Try sign language and other communication methods.

I think there is a neglected area of non learning disabled Autistic - can be alongside other diagnosis- and the needs can be quite high or fluctuating depending on situation- despite the person being cognitively able.
I believe there are people who struggle greatly who are in this area and often felt more specific diagnosis might help communities to respond better.
OP would you see that as a separate category, or just ' non profound' ?

My child doesn't fit in any of your boxes. He has autism and adhd. He has an ehcp and attends specialist provision (age 13). He has a one to one now (finally, after years of trying to get funding). He may never be independent - he is a risk to himself and others because he can't interpet language/social cues and so on. But he is fully verbal, he can self care etc. However, he can't go out in public without a carer because he is unable to function safely with other children (or adults who can't adapt to him). Will he always be that way? I don't know. I suspect so. He will have huge meltdowns, attack others if he feels in any way threatened (misreading cues).
Are his needs any less? No. He needs one to one in any public setting.
So where is he placed in this then?

‘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’

Just to pick up on this point that you make, I think the flipside of this is that those with autism who are more able, have often had their autism diagnosed as mental health conditions, or not received the correct treatment as autistic people who might benefit from a different approach to their mental health . For example, autistic women with eating disorders would be treated differently if they were recognised as being autistic.

You get that with Parkinson’s, cancers, with MND….loads of conditions have multiple presentations abd it’s still the sane thing

Are you trying to be patronising?
Do you reslly think that poster wont have thought about those things?

You talk about this as if autism at all levels has not been extensively studied.

Two people with a diagnosis of MS can lead very different lives. They still have MS.

My son was non-verbal until he was five. The help he received because of his diagnosis was life-changing. He is still just as Autistic as he was then, but presents differently.

But you can test for the cancer via biopsy.

We’re talking about 2 different presentations that have no identified cause, pathology or test.

I will ask again - how are they the same thing?

You mean Makaton and PECs, and yes.

He has the body and hormones of a 14 year old, and the capacity of a 1.5 - 2 year old dependent on what the request is.

His capacity to meaningfully change any of that is incredibly low - he’s moved 2 months in terms of cognitive development in the last 4 years.

Please don’t assume that we’re not informed enough on his needs to have tried alternative communication. We’re his parents.

You can see MS brain lesions on scans. So you know it’s MS regardless of symptoms.

What similar diagnostic test is there for autism?

You’d be suprised how many haven’t learned BSL or taught their child BSL. It’s not just for deafness, it also works for mutism.

There are many medical conditions that vary massively in how they impact people.

to take epilepsy as an example, some children with epilepsy respond very well to medication and you would barely know they have it.

others have epilepsy that does not respond well to medication and each seizure causes more and more memory problems and brain damage.

you’d hardly look at these two situations and say they have the same illness but they do.

I really bloody feel for the devoted loving parents of severely autistic children being lectured by very high functioning, late in life autistics who ‘know so much better than they do’. It’s awful. It wouldn’t be tolerated in any other arena.

I agree with you i don't think a person who will need 24hr care for life should be given the same diagnosis as a 50 year old who drives has their own family, home and a full time job.

Because there’s a diagnostic test.

We’re just going round in circles here.

You wouldn't get a diagnosis of autism without MH issues. Its got to be bad enough to have a significant impact in at least 2 areas of your life, and be traceable from childhood. I can't speak for everyone but for me that resulted in clinical depression and long lasting anxiety.

ETA: Though I don't disagree that it needs to be more clearly split up. If I disclose I have autism, because I'm married, have held down jobs in the past and have kids, I'm not readily believed as I don't seem "bad enough". What isnt immediately apparent to the wider world is my mental health struggles and how I find social settings very difficult and draining.
People get it if I say its the old Aspergers.

That's a sweeping statement. My child with SM cannot communicate at all if anxious. So many people say oh give them a pen and paper. It is patronising, and ignorant.

They have brain scans for autism as well. It’s not the only diagnostic tests used.

I have had SALT involved since my child was two we have tried signalong,PECS ,he goes to a special school that does total communication with him has done since he was four hes 16 next month still non verbal