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 One of the reasons given is that their autism would be seen as "mild autism" and support maybe withdrawn.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

The trouble is we are up against people like the OP who can't understand why our child needs support.
The LA will do anything to avoid funding the support needed. The settings children like mine need apparently don't exist. They are the Inbetweeners not severe enough for specialist provision and not able to attend mainstream

In Wales EHCP don't exist and while I know the process to legally fight. We spent years working with the LA jumping through the hoops with a promise of this is the process and how we get support.
We eventually got to the point where
A. We realised the LA were never going to deliver
B. While we could go down the legal route there is so little time left they will almost of aged out of school
C. School caused so much trauma that even if we could get the support they needed years ago they now can't manage any formal education environment

So we have created an environment that works ourselves. It's not ideal in any way.

I don't begrudge those who get support - I just believe every child who needs support should get the support that is right for them.

But there is a lot more understanding in society for those whose children have more obvious needs. In our community people have relied round with fund raising and practical support. The parents get a lot of support

It's so hard when you don't get any understanding and on top of that you get people judging you and making comments because they do not understand

I completely understand, because my family has the same different levels of disability including a child similar to your son. It is still all autism. I would never tell the parent of a child with a profound disability that my child required the same level of support but it is all still the autism spectrum and my child still requires a diagnosis for his own support needs.

You do realise that for some people this is far more likely to result in less support and less likely their needs will be met.

The problem with creating a complex matrix system of different areas of function is they will only be relevant to medical professionals. Joe Public isn’t going to involve themselves in trying to understand spiky profiles and advertising level of function from a series of boxes and scores.

I think Levels 1,2,3 are as good as it gets - nothing is perfect, but it’s easily understood by the public and will immediately separate the ‘train enthusiasts’ from ‘slightly delayed/anxious etc and needing some or medium level support’ from ‘totally or mostly non verbal, little understanding, cannot be left alone, needs highest possible support and safeguarding’.

No it isn’t if your life and circumstances make battling impossible. I have a degree and struggle with the mountains of paperwork and fighting I have to do for my dc’s needs for a variety of reasons. Others are in an even worse situation. Very little meaningful support is there and recognising the widely reported unfair situation that exists in SEND for those that are the most vulnerable and less equipped or able to fight is key and increasingly being recognised.

The system is not equal.

I think the problem is that we are all so done in that people are assuming suggesting another person has greater needs mean they shouldn’t have their own children’s needs met.

I would like to say for the record that:

a) my child needs support
b) it’s a bloody scandal she has never had any and there has been shocking lying, obfuscation and gaslighting from the institutions who should have helped us
c) I am tired, burned out and stressed

But

d) There are parents of children with far greater autistic needs than mine who need more intensive support than we do, and whose parenting is immeasurably tougher

I hope that that viewpoint is pretty mainstream. Perhaps I can see it clearly as we’re somewhere in the middle.

I haven't heard it termed as a micro deletion, but yes to a deletion of one part of one chromosome. Such a huge variety within the official diagnosis, we really didn't and still don't know the expected level of functioning that is attainable.

I just believe every child who needs support should get the support that is right for them.

I wholeheartedly agree.

Ultimately, it isn’t the LA making the decisions, even in Wales with IDPs. In case you change your mind, there are options even if school is inappropriate.

No it absolutely would not. There are already 3 boxes DSM are using and they themselves say it’s crucial that it’s recognised these care needs can fluctuate. One of my dc has been in all 3 boxes and will continue to fluctuate. They are pointless and meaningless as have zilc to do with the care she actually needs. Nobody is ever going to look at a historic level and use it for anything, they’re only going to look at the need presented to them.

"Most autistic with complex needs are getting an appropriate education to meet their needs. "

There are plenty of autistic people with complex needs who do not have a school or college place. My son was chucked out of his specialist independent school because he was deemed too complex ( and the school could make greater profits and find it easier to staff less complex children). He had no education until I forced the LA to provide EOTAS by going to Tribunal and JR.

There is a growing issue with provision for the most complex children and young people. Schools including independent specialists don't want those who require that level of support.

I would never tell the parent of a child with a profound disability that my child required the same level of support but it is all still the autism spectrum and my child still requires a diagnosis for his own support needs

Absolutely, however what is being debated is should the diagnosis be the same. What if your child could get a diagnosis, that got them the required support, but it was not called autism?

I’m not in UK, and my child was diagnosed before the DSM changed. As they had a diagnosis, albeit not autism via that DSM, the diagnosis enabled them to additional educational, medical and financial support, didn’t need to be shifted to something they didn’t have just to get the required understanding and support.

Unfortunately, yes.

There will for example be many families worse affected by the White Paper than us, as it will IMO lead to many support packages being removed. The first thing I did when it came out was look at the classifications and roll out dates, and there is some comfort in our son’s level of disability, in that it’s not disputable.

I don’t think that’s right, I think that those classifications shouldn’t lead to anyone receiving no support or being left unable to access provision.

But just having the label “autistic” won’t help those people.

Thank you
I am concerned with the changes that are coming.
As things stand I can not face further battles. I have been completely exhausted by the process.
I was at breaking point and I had to keep enough of me left so that I can support my children needs and be there for them.

I think the severely affected people you are talking about likely have other disabilities alongside autism, such as developmental delays and learning difficulties etc
So I don't think the diagnosis of autism needs changing, it's just that people who aren't familiar with the criteria for an autism diagnosis, don't realise that some people have other developmental conditions happening at the same time.
So they see them and think that's what Autism is.
My daughter doesn't have obvious learning difficulties, however she is autistic and without support in most areas would not function well.
She is years behind her peers and her difficulties mainly lie in social communication and understanding, sensory issues, non verbal at times, and distressing mood changes. It would take me all day to list the things she struggles with, and how her brain just doesn't process things in a neurotypical way, and the affect that has on her, but she is definitely autistic and needs help, even though she wouldn't meet your description of having severe autism.

It’s not more autistic need it’s learning disabiiity need. We re talking about people with a comorbidity of autism AND learning disability .

So would you change the diagnosis and the more extreme support need level?
Would this not be autistic and cuz

It never would have as any allocation of anything is based on need and the bar is woefully low as regards that.

Sorry, I’m confused.

If your DC have similar need to mine (you mentioned more similarity to my description of my son) then an exclusively needs based support package would be working for them.

If it isn’t, then their needs being similar to my sons (who isn’t as affected by things like the White Paper) isn’t helping them, and we need to look at reclassification.

Which is what I’ve been saying.

I liked Asperger's. I know about the Nazi links, I get why some people wanted it changing, I understand that it is also autism BUT I felt it really encapsulated my difficulties. It was a "may struggle with these things, but with a bit of understanding will do well in life" sort of a diagnosis. Now, I have autism and people are like "really" with a head tilt. When I say "yeah I was diagnosed with Asbergers as a kid" they're more likely to get it then.

I know people will disagree with me. In the same way I often get a lecture (in real life) about why I shouldn't refer to mine and my children's autism as "mild". But it makes sense to me!

It is more autistic need.
Core Criteria for Profound Autism
Individuals generally meet the criteria for profound autism if they are eight years or older and display one or more of the following: 1, 2, 3]

• Cognitive Ability: An IQ score below 50 (indicating a significant intellectual disability).
• Communication: Being nonverbal, minimally verbal (few spontaneous words or word approximations), or relying primarily on echolalia/jargon.
• Functional Need: Requiring 24-hour, round-the-clock supervision and intensive support for daily activities, such as bathing, dressing, and feeding.

None of that requires a second diagnosis of a further learning disability.

Well if that’s the case you could have a PHD and be non verbal and classed as profound.

Or be verbal and have a PHD but need 24 hour care.

As I said you can’t put autistic people
in boxes.

You seem to be threatened by the fact that some people have more profound needs than your children do.

Edited, as had misread. Sorry!

I doubt you’d have a PhD with an IQ below 50?

Edited: apologies, I see that it’s one of more, and had missed that, do you are right.

I really don’t. I just know when something is ridiculous and pointless which the op is. Sadly the care needs my children have and receive aren’t going to go away because they don’t fit into a meaningless label or box.