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 One of the reasons given is that their autism would be seen as "mild autism" and support maybe withdrawn.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

Many of those with severe autism don't get diagnosed with mental health issues due to their lack of understanding and their communication needs.

I suspect many do have mental health needs, I would if I had spent my life not being able to communicate, whilst impacted by sensory needs and not understanding where I am or what is happening all the time.

It wouldn’t be appropriate to test in the same way.

eye tests are standardized for adults. The protocol picks up fairly quickly on any vision issues. You can’t use the same protocol on non verbal people because they don’t have verbal communication.

there are specialised eye tests for children that aim to test the same thing (vision) but don’t rely on the same level of verbal communication (or ability to recognise letters).

it’s not the case that just because you are looking for problems in a particular area you need a test that works for all of humanity.

I completely agree.

We have a real issue as we explain our DS is autistic and people assume they know what that means as as they know someone who is autistic.

The worst examples for us are when we try and explain before medical appointments the level of support our son needs. As soon as people hear autism they say no problem, we have that all the time… this often means we end up going back for a second appointment once his needs are demonstrated at the first appointment and then the appropriate support or approach is put in place.

There are many, many other examples but the above is one of the most frustrating.

Just to clarify I give clear examples and I am very vocal about his needs but it falls on deaf ears.

I think a different diagnosis would help us and our DS when he’s older.

« A more helpful distinction is probably something like "autism with LD" and "autism without LD". But it isn't that neatly sortable.«

Im autism with LDs
im one messed up kitty.

Youre not going to be able to sort us like the sorting hat

Yet here you are, articulately and confidently arguing on Mumsnet.

I know it’s controversial to try to differentiate but you are very far away from the children of posters on here who have described their limitations.

I've just seen your edit and your comment about Aspergers and people understanding what you mean by this struck a chorde with me. I think in a way this is the flip side of what I'm saying and there would be benefits for people like you too.

As soon as people hear autism they say no problem, we have that all the time… this often means we end up going back for a second appointment once his needs are demonstrated at the first appointment and then the appropriate support or approach is put in place.

This is normal for us. Why so fustrated? They can’t pre-assess his needs before meeting him at least once.

That didn’t answer my question at all.

Which part of the diagnostic criteria for autism results in not understanding where you are? Are you sure you're not confusing it with another co-occuring condition?

The thought my son could go to a msinstream
😂
He spent one year in a mainstream nursery total disaster

My son waited 3 hours in A&E a few weeks ago, to be told that we should take him home because he was too autistic to even examine.

The doctor’s exact words were “he’s not going to engage in my tests, and even if I do test him I won’t be able to establish where his disability ends and this problem begins.”

“Frustrated” doesn't cut it.

A lot of the assessment is done through play. Visuals traits are very obvious to a psychologist, how the child engages in play, makes eye contact, flap hands, spinning, an occupational therapy assessments on coordination and behaviours. I mean if they’re non verbal it’s usually a high marker from the off.
Not sure how a 50 year old testing works.

Just sending love to all parents with a child with severe autism (and so sorry if my terminology is not correct).

I work with several people who have shared that they have autism. I try to make any adjustments and help in any way I can. They are very bright and this is a world away from the son of a friend who has severe autism. He will never live independently. My friend finds all stories she is told about how well it is possible to function almost insulting. It will never happen for her son.

I believe it is possible to recognise that some people need certain support and also recognise that it can be a vast difference in the support needed by other people.

Yes and just because I can string words together doesnt mesh I am actually communicating what I intended and the person listening is hearing what I am saying. You can be ‘verbal’ but it all comes out as nonsense to those around you, although usually in my case it comes out as rudeness and I get responded to like I’m a total bitch.

That’s literally exactly what it means. You’re communicating, and I can understand you. You’re a very articulate person and I have zero issues understanding what you are saying.

Have you tried asking him to write you a book, or teaching him the sign for “tree?”

Shocking parenting! 😂

My son was diagnosed with Autism he wasn't given a level or a degree he was just diagnosed

Yet I am not “verbal”. Kwim? Typing is not being verbal,
Im mostly mute IRL.

Thats why my point that communicating isn’t all about being verbal.

I think this is really tricky. I'm autistic myself and was diagnosed under the very old criteria in the 1970s - and that very old criteria meant that I was diagnosed with childhood schizophrenia. I'm not schizophrenic.

My granddaughter was diagnosed much more recently, around 2016, and these days appears 'mildly' affected to most people. But that's because they never saw / don't know about the constant screaming as a baby until she was 3 and was able to verbalise, the heavily restricted diet, the significant hypermobility that means she can't walk reliably any great distance (say more than quarter of a mile), the persistent insomnia, silent panic attacks / meltdowns, etc., etc. I mean in many ways she's a lucky girl because our entire family have endless amounts of experience in LD and MH and we were able to absorb the child who needed to be picked up 2-3 times a week from primary school, would sometimes be electively mute, occasionally attacked her mother, etc. Anyone looking at her now would consider her to be as unprofound as it's possible to be. She's not. What label would you suggest for her?

But yes, I do tend to agree. The difficulty with autism is that it's often a nice little 'explainer' for people.

You can speak. You can type. You can understand language. You can get your point across.

Trying desperately to align yourself with very disabled children whose capabilities are nowhere near yours, is just so unedifying I don’t have the words for it really.

We don’t even need to go near the ‘umbrella autism’ thing, it’s just really frustrating to read and must be awful for the mums here.

Great! Like I said do not need to be verbal to be able to communicate.
None of this is verbal communication.

It’s frustrating as it’s completely avoidable and causes him significant distress.

You are doing the same, assuming you’re in the same position as us and our DS, when you have absolutely no knowledge of his level of need.

You demonstrated my point for me!

Well it is not a neuro typical disorder.
The link between high functioning —if you like— teenagers with autism and transgender is huge. Sadly suicide too.
I think we need to be more mindful of those trying to live a normal lifestyle with autism, stop judging for not being autistic enough as it’s not easy to feel like a misfit.
Also camh’s won’t see children with autism if suffering with MH. No dual services.

I can’t speak. And you have no idea how often people do not understand what I am writing. Or the times I do not understand what they are saying to me, it happens daily,

I was that child once.

I’m trying very hard to give you the benefit of the doubt here.

It’s great that you’re able to express yourself by typing.

The level of need we’re talking about differentiating for however, wouldn’t allow that to happen, because they don’t have the capacity to think those thoughts, or type them somewhere.

My child can’t type on a website, he can however headbutt the keyboard.

He cannot debate, unless the debate is the word porridge.