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 One of the reasons given is that their autism would be seen as "mild autism" and support maybe withdrawn.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

Yes and if profound needs don't change it is far easier to support as you know what support they need everyday.

When needs fluctuate there an awful lot of time when needs are no where near being met and sometimes that has had awful consequences

It’s not easier.

I think when you are used to caring for a profoundly autistic child you are on high alert 100% of the time because you know they are unpredictable in dangerous areas like roads/water. If a child doesn’t run into the road or a body of water 99% of the time but may do it that 1% when they’re unregulated I do think that’s different. Not saying it’s any less dangerous or risky as I know that’s not the case especially when you aren’t expecting it

It is easier when you know what support is needed. It is harder when it is so unpredictable that what works today will fail tomorrow.
It's harder when to support package doesn't meet the need that presents

That doesn't mean it's easier for the parents. It just means predictable needs are easier to plan support around.

That doesn't mean it's easier to get support in place. It just means it clearer what support should be in place

Do you have a child with profound autism and one without?
My parents do.

It’s not easier.

The point you make is a good one. I hope your daughter does make progress and that the meds and camhs help her. 💐

My next points aren't aimed directly at you but your post got me thinking from a parent point of view not from the child/ yp's.

Are the mental health issues that some autistics have seen as worse to deal with by their parents because there is the sense that with the right support they could improve, hope and desperation to an extent and being reliant on help which you know your child needs but in most cases doesn't exist to the extent that they are needed?

The flip of that is that for parents of severe kids we don't have those expectations or hope of improvement to that same extent, it just isn't a rational expectation or outcome. Does this make it worse in some ways as we know this is their life until we die or can't care for them any longer. Let's be honest too, it isn't a great life even with an iron clad ehcp and every support, it's still a crappy existance.

I really don't think that some people posting on this thread have any idea what presentation i'm talking about when discussing severe or profound needs. I'm not talking about kids who are happy all the time because they don't understand their world who just walk around flapping and grinning or kids who have communication for a period then don't. I'm talking about people who are likely scared, suffering and overwhelmed and either don't understand why or do and don't understand communication enough to communicate. No medication helps and CAMHS isn't even an option because any needs are put down to LD which the majority don't even get a diagnosid for. Yes, they can be happy like any person too but i'd bet the world is hell of a lot scarier for someone with little understanding of it.

It's not easier, we can't ever relax and not be vigilant all the time. We don't have the luxury of the days when they don't need that level of support.

If there is ever any doubt then surely the carers should be providing higher support all the time so they aren't caught out? It's exhausting but that is what parents of profound kids do.

Honestly? I have no idea. On one hand my daughter who will need significantly more care/intervention is often in her own world so oblivious to the world around her, it’s almost a comfort that she doesn’t kick off when she goes to nursery (one whole hour) but it’s not because she’s well adjusted and wants to go in, she will just go anywhere someone leads her. There’s no actual recognition that she’s going and I’m leaving. Obviously this might change as she’s older and she may become more fearful of her surroundings.

with my DD16 I find it hard because I know at the moment she is no where near fulfilling her potential. While all her friends are shopping for prom dresses she’s sat at home dousing her hands in hand sanitizer and worrying she has germs.

she once walked 12 miles, in our home. Just pacing back and fourth. So whilst she is deemed intelligent/bright her struggles for me seem harder?

but then OTOH you have children with autism who can be come violent when not regulated, that is manageable to a point when they are small but so much harder as they get older/stronger.

honestly? It’s all pretty shit really.

Reading your last paragraph just made me want to say I hope you are okay OP my son is very high care needs but not quite at the level you are speaking about. Even that is shit so i cant even imagine what you’ve both been through and are still living through now, it’s very hard and is truly heartbreaking. Hope you are taking care of yourself too (if you ever get a spare minute lol) and I hope you have some good support around you. The same goes for all you mums and dads that are in a similar boat with high needs or profoundly autistic children you are doing amazing , keep going 💪 💗

Just realised how awful that paragraph sounds @Polishmamaa . I want to add i do know what makes him laugh and smike, what cartoons he enjoys, which foods etc he does have a personality which is very loving and is an amazing young man. Thank you for your kind words.

It’s not awful at all it’s reality and i don’t think a lot of people understand judging by some of the ignorant comments I’ve read on this thread. I can tell by your comments how much you love and want to advocate for him don’t worry, I just wanted to offer some support because I know it’s not an easy ride but their laughs and smiles make it all worth it 😊

"far easier to support" You must be joking, right?

You really don't have a clue.

"it just mean it's clearer what support should be in place"
😂😂😂😂😂

just this.

I'm not talking about easier on parents I'm talking about easier to predict support based on the child the PP has who PP said has very predictable needs. I am not commenting on other children. A PP said their child's needs never change and are very predictable. That is easier to plan for than other needs that change all the time that does not mean it is easier in any other way.

Some complex needs wouldn't be predictable either because it varies so much

This is a wild take. Truly astonishing take.

I don’t think you know what you’re talking about.

The whole point of the discussion is that yes, autistic people who can communicate should get less support. There’s a finite amount of funding and it’s bring effectively siphoned from those with profound needs to those who can do everything for themselves.

Not sure as my DS doesn’t really belong in either category?

He is very ‘obviously’ autistic to those around him, lots of flapping/stimming/noises constantly, he is 10 but works at a KS1 level at school, he still likes toddler books and watching peppa pig and everything aimed at much younger children as that matches his level of development and understanding and vocabulary. He has to attend a special needs school. He has sensory issues and meltdowns. But he walks and talks and can read, and is progressing (just at a slower rate). I feel confident that he will be able to drive and work when he’s older.

Ok

2 profoundly high needs children

1. Has predicable and consistent needs

2 has unpredictable and widely inconsistent needs

OP says her child is the 1st child.

From a purely planning support perspective the first child is going to be more straightforward to plan and put support in place because the type of support can be consistent

This doesn't mean child 1 is easier to care for or happier or anything else. It just means that the support needs are going to be consistent

Support may not be good enough. The support person may not have all the skills in either case

I don't know op child but that was how she described them

"very predictable"
Honestly 🙄
This stuff makes me even wearier.
This is why there needs to be more definition in the diagnosis.

It's not my wording

The main problem as I see it is that it just isn’t possible to be that binary - there are a lot of people who fit somewhere between “no communication / no understanding” and “can do everything for themselves”.

If a line is drawn, there will always be people on the “wrong” side, yet their needs may be just as extensive - for instance, if you consider profound needs to be completely no communication, where does that leave children with similar levels of understanding who have one or two words / signs? Or if you say that it needs to be based on IQ, then what’s the real difference between someone with an IQ of 49 and one of 51?

I think it is important to discuss different needs, but also would a separate diagnosis just create different problems for people who still need 24/7 care and support?

Even worse, you're quoting something you don't even understand.

No, because the people who need 24/7 care and support will still be able to access it. Whether it's a good enough quality support depends on how much money there is in the pot.