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 One of the reasons given is that their autism would be seen as "mild autism" and support maybe withdrawn.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

When you apply for CHC funding ( eg for those with dementia) they use 4 domains

Nature, Intensity, Complexity, and Unpredictability

I think similar could be used to categorise ASD.

Anyone with dementia has a terrible illness but the impact on others / care needs differ. To deny this frankly is emperors new clothes world and really offensive to carers.

1 Does the person even realise they have ASD
2 is the person aware of their behaviour at all and its impact on others
3 Does the person need moment by moment support,
support hour by hour,
several hours per day.
once or twice daily
once or twice weekly
once or twice monthly
needs only occasional support
meeds support sporadically eg nothing for weeks and then intensely for a week or so

etc

4 How long does any intervention / support take

5 If the intervention / support is not provided what is the upshot

6 Does the person have mental capacity all of the time, some of the time or not at all

7 Can the person decide on their daily activities for themselves and express their wants on a daily basis

8 Can the person manage all activities of daily life, some activities of daily life or only a few activities of daily life or no activity of daily lives.

I’m so sorry. I think this is exactly why there are concerns about the widening net of autism diagnosis. Like many areas inclusive often only means inclusive if it fits that groups version of it

I agree

if you read my post I have categorised him as middling ASD.

However he needs hours of support per day and most of the day is supported. Social care have him pegged for future supported living with hours per day of PA support category.

I am hoping to get him categorised to being ok overnight so that he can live independently with support going in.

I think at a certain stage of ASD ( when services are involved permanently) you know where you sit.

He currently is categorised as not having capacity for all decisions I have asked that to be altered as have the care agency.

Can you imagine how some people with autism would react to have their capacity queried? This is why to have it all lumped in as one thing is a nonsense.

There does seem to be a weird difficulty in this area for people to grasp that "this is really hard for person A" and "it is however much harder for person B" are not mutually exclusive ideas. Members/supporters of the A group often seem convinced that acknowledging the differences to the B group will lead to A's problems being downplayed or overlooked.

I can't say I've observed this much in other areas. (Maybe I haven't been looking in the right places.) We can acknowledge that things are really hard for person with amputated legs but even harder for people paralysed from the neck down, without downplaying the first or suggesting their support might be cut if we don't treat the two conditions the same. We can acknowledge that someone might be really struggling with PTSD after being mugged without having to put them in exactly the same category as someone suffering PTSD from being a soldier in a bloody war.

This is a good idea. You have different types of dementia and with PD you get subtypes (although that is another thing that gets misjudged a lot and everyone is assumed to be in the dramatic cluster). The issue here is a flat name for ASD allows diagnostic overshadowing in both directions. It is convenient to for professionals and LAs to keep it as is. You can minimise the needs of those that have a lot of potential if they had support by saying they don't need help, and then minimise the needs of those who are more severely affected/have commorbid SLD. We are all falling for this pitting against each other on this thread. We shod demand everyone gets the right support really.

My son acts like someone with dementia. It does feel like he has childhood dementia, but it is very hard to get people to see that, because an ASD diagnosis conjures other images.

You are aware that females, generally speaking, were harder to diagnose? I was diagnosed at 23. I was misdiagnosed in my teens with anxiety, depression and OCD

However there is no way when as a female you would not have been diagnosed with something into had the issues my son had.

Surely you can see that there is a different category of needs.

There really is no masking at a certain level of ASD. My son does not even understand the need to or concept of masking. He walks around talking to himself/ he has violent verbal outbursts that can be really upsetting.

Social Services query his capacity to manage his own affairs - do you really want to be in that category? When someone queries your ability to run your own money/ make your own choices p where you live?

My son is downstairs talking to himself at aged 22.

His Pa turns up at 11am thankfully.

I will check his bathroom to see if toilet blocked. But his tomatoes / cheese for his sandwich
Plan his day eg what activities he does
Argue him into the shower and stand around outside bathroom to make sure he gets in
Tell him what the weather will be lien and tell him accordingly what to wear otherwise he won’t wake a coat as he sees sun ( but it’s still cold)
Ask the PA to do some daily life skills eg getting him to go 3 stops on a bus alone

You have no idea how hard conditions are for people because you’re not living them and don’t know the details of diagnosis or the full clinical picture. You just can’t give a level to autism.You can add on a learning disability and you can add on many other severe impacts too for something that already needs to impact life severely for all to get a diagnosis.

And as for belittling levels of PTSD now too. Oh the expertise! Laughable to think a rape or attack victim needs to just buckle up because they weren’t in a war. PTSD can impact people in different ways and some catastrophically so when in conjunction with other conditions and circumstances. ND people are more likely to suffer from PTSD for a variety of reasons which sadly they’re more likely to experience-treatment in hospital, bullying, attacks etc. A catch all of they weren’t in a war so their ptsd isn’t as severe is annother example of how ludicrous the premise in the OP is.

“The second part isn’t true for minors. If they apply and appeal the decision they nearly always get it if they have an ASD diagnosis.“ If there is need.

@FoxtrotOscarKindaDay

His primary need is autism. There is then a list as long as your arm of other diagnoses, which impact in different ways and to different severity levels.

They include GDD, ADHD, sleep deprivation, double incontinence, precocious puberty, sensory processing difficulties, social anxiety, and OCD. He’s currently being assessed for Tourette’s.

I haven’t said that he’s been left to rot - keeping up with the various specialists we have involved is a full time job. I also haven’t said that support shouldn’t be available for people without his list of needs; or for people who are affected by them differently.

I think however that we have to accept that they do affect people differently. I don’t know the impact on someone who is verbal but suffers extreme MH within their profile. I don’t have that child, I have mine. I’m sure the impact for them is equally as meaningful.

But they need different support, and they present differently. Trying to suggest otherwise is just disingenuous.

I’d support labelling to clarify severity. My son is diagnosed and the diagnosis has been important for us to learn how to parent him and understand him, but he gets zero support in any other aspect of his life, school aren’t interested because he doesn’t disrupt the class and muddles on.

He doesn’t consider himself as having a disability, nor do I, and I do feel daft using the same label as a friend who has a son with extremely life limiting profound autism. There needs to be differentiation if nothing else but to help how we discuss it.

Just to add

An Ed Psych repeatedly told em that I had ASD. He is a friend.

I have trich - heavily linked to ASD / ADHD

I have some obvious criteria of ASD although I am social but I have many communication traits of ASD

i can understand why people might want a diagnosis as an adult to understand things eg th OCD type behavior , the rigid thinking etc. For me, I just try to have an awareness that I might be ND and read up on it.

However not in a month of Sundays am I like my son who frankly has a horrible life ahead of him reliant on the state to look after him ( other than what we leave him in our will).

We have to acknowledge that surely?

You can’t level Autism and need can fluctuate at ALL supposed levels thus making even levelling for need pointless.

Maybe wait a few years before you proclaim autism isn’t a disability, it is hugely life limiting and I object to the significant support needs my children have and how life limiting it is for them being dismissed because they don’t have a separate learning disability too.

Hear hear.
why so many goady posts lately?
everything boils down to ‘this person is getting more than me / something they shouldn’t , and I don’t like it’

@Cubic anyone who knows anything about autistic spectrum conditions will quite clearly see where need is , you don’t need special levels, just good descriptors and evidence and the provision is always provided for people whose symptoms are visible and hugely impactful.
its those whose symptoms are often not obvious who slip through the net.

This. Somebody has an obsession, name changes and starts yet another offensive thread every week because they can’t bare for a week to go by without the same goady discussion.

But then people like me who do need support, are lumped in with people like friends of mine who hold down jobs, etc. I'm nothing like them

I’ve reported the quote in your post because quite frankly it was appalling and hugely abelist but then we all knew threads like this attracts the abelist like flies to shit- which is exactly what the op wanted.

That’s kind of what I mean, it’s such a broad label and yet it impacts people so differently. At the moment my son’s autism doesn’t hold him back, and if anything, I worry the label could in itself. So some kind of labelling that speaks to the level of support required might be more helpful.

It is absolutely true for minors.

In order to be awarded DLA, the test is whether they need care and mobility support over and above what a child of the same age with no disability would reasonably be expected to need. That is what would need to be evidenced in a mandatory reconsideration or appeal to tribunal, not diagnosis. The diagnostic report might form part of the evidence but whilst DLA eligibility is different from PIP post-16, it is not diagnosis based.

I am not saying autism isn’t a disability, I am saying that my teenage son who is allowed to decide for himself does not feel like he has a disability and I can see why he feels that way. His autism is not life limiting; his ADHD however, is. Though I take the point about fluctuating need. But I just think autism is so broad and at the moment the diagnosis is pretty binary with services not at all equipped to support the varying need.

But is autism progressive like disease? If you have level 1 autism you’re not going to progress to level 3

I usually describe my son as having profound autism and a severe learning disability.
I think his autism impacts massively on his ability to learn but with the right environment and support he can learn some independence skills, to manage his own behaviour etc so I don't think he has a profound learning disability.

It’s not a label it’s a diagnosis which you can ignore at your peril. He is more likely to struggle massively if you dismiss his disability and get him to hide it. It’s a life long condition and you have no idea what level of need he will have as he travels through life .How do you know it’s not holding him back and how did he get a diagnosis when diagnosis hinges on traits having a significant impact on life? Pre age 11,I thought one of my dc was managing fine,fast forward to now when she can’t even manage supportive living and has had years in and out of hospitals and needs continual support and input from services.If her autism had been dismissed and ridiculously “ levelled” early on things would be significantly worse than they are now.