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 One of the reasons given is that their autism would be seen as "mild autism" and support maybe withdrawn.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

Quote me where I wrote “deserving”

You’re conflating need with some kind of superiority.
They need more support. They need a completely different, intensive, level of support. That’s it. Nothing more. Nothing less.

I actually think some people who have autistic traits but are “high functioning” - the type mentioned on this thread, who have gone through life with some struggles but get by and eventually get a diagnosis - would find a differentiated label (the equivalent of Asperger’s) helpful. The reason why I say that is that the term “autistic” has become associated with certain traits and behaviours, and a general inability to function in society without support.

I agree with you. I'm autistic, as are two of my children. However our lives are vastly different to those with a more profound level of disability.

This is absolutely bang on. I think there is a stark difference between inherited autism and de novo genetic mutations. I was just talking to my partner about this yesterday. The root cause of the symptoms gets largely ignored and everyone gets dumped under the ASD category, but they are complete different disorders with different genetic mutations. These de novo mutations change the brain significantly in functioning as they do with other chromosomal disorders.

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

I’m not convinced it is most. Many parents have to appeal, even if their DC has complex needs, then enforce provision. Many are in inappropriate settings.

You can request an EHCNA and appeal if refused/the content needs improving. If DC is unable to attend school, you can also request section 19 provision and enforce it if refused. You may decide not to pursue these, but they are options open to you just like they are to other parents who have DC with SEN.

Wow total gaslighting. Have you literally been asleep the last few years?It’s widely recognised how few options there are for families and how badly SEND families are being let down. “Just get an ECHNA and appeal” Families are trying to hold down jobs, severe SEND and other difficulties whilst trying to trying to educate and keep disabled children safe. Not everybody has the same resources. Unbelievable!

I don’t think bringing up different stages of cancers or specific conditions like a missing chromosome helps educate people on autism. Those conditions have specific tests and a clear biological basis to be labelled as such. You don’t need to be a doctor to understand what cancer cells are at a basic level and how there are different levels of severity. And also that that means symptoms can be different. I don’t think anyone is expecting two people with the same condition to be identical. They just don’t understand the reasoning for grouping people that have little in common with no clear biological or even behavioural basis.

There are specific traits and levels that need to be met to get an autism diagnosis.

No one is debating that some people need more support than others though. I thought the thread was to discuss if autism was too broad a diagnosis as it's such a large spectrum.
The only child I know with a profound disability also has an additional diagnosis of global development delay which helps us articulate how disabled they are.
There seems to be people on this thread and in the general public that can't see how everyone on the spectrum is all linked and the diagnostic criteria which is what causes the confusion. I have a lot of understanding, due to it running through my family to varying different extents, so it's frustrating to read through.

My dc need an intensive level of support. They don’t have a learning disability though.

I didn’t say it was easy or quick. And I didn’t use the word ‘just’. But it is an option open to the pp. I didn’t say everyone has the same resources either. Stop making up what I have said. I didn’t gaslight anyone.

I have 3 DC with EHCPs, including 2 who do not attend school, and have supported thousands of others. I know exactly what the system is like and what it entails.

The fact some DC, whatever their needs, don’t receive the support they require isn’t the fault of those DC or their parents that do.

Read the post after you posted this.

People are absolutely saying their children need the same “intensive care” as children with profound autism. They’re incredibly offended by the idea that those who are having their nappies changed into adulthood, can’t speak or even have an understanding of their own name need a different level of care to theirs.

My partner and son are both autistic.

My partner works full time, maintains a relationship, lived independently before we met, fulfils all the expectations of being a grown adult. His barriers are emotional and social. He has anxiety, struggles to understand the feelings of others, and can be very pragmatic/fact based.

My son, spreads excrement up his walls and eats mud. Yesterday we left a swimming session because he had a meltdown… we wouldn’t let him throw someone’s shoes in the pool. He can’t tell you when he has a headache, when he’s hungry, when he just doesn’t fancy the playground today, or why he wants to wee everywhere apart from in a toilet.

The only thing those two people have in common in terms of their autism, is the name. Both would be taken to a new setting with the label of “autistic,” and until you met them you wouldn’t necessarily know which was which.

No it isn’t an option open to everybody My dc also has an EHCP but I am also aware how having an EHCP is rapidly turning into a privilege reserved for those with the best resources as I also have contact with people not able to battle.

So very well said.

My dc don’t have learning disabilities in addition to autism but are nowhere near like your husband and share much of what your son does.

You can’t put autism in boxes.

My son gets a high level of support due to his care needs ,that just wouldnt be available to people with different needs
This isnt fair on those whose care needs are different but thats the reality

The thread is about “should we be able to separate them into boxes?”

It is an option open to everyone. Some will find it harder and need more support but it is an option open to all.

Nobody has said that.

This is exhausting.

Surely you can see there is simply no way of proving a non verbal 6 year old in nappies and who screams all day ‘has the same thing’ as a highly intelligent university professor who just feels uncomfortable socialising and has an array of niche interests?

Saying ‘oh, it’s all autism…’ is ridiculous.

It’s like 2 people presenting with headaches but one is mild and the other is having seizures, vomiting and coordination issues and saying ‘ah yes, these must both be caused by the same thing’

Nobody has said that.

This is exhausting.

Surely you can see there is simply no way of proving a non verbal 6 year old in nappies and who screams all day ‘has the same thing’ as a highly intelligent university professor who just feels uncomfortable socialising and has an array of niche interests?

Saying ‘oh, it’s all autism…’ is ridiculous.

It’s like 2 people presenting with headaches but one is mild and the other is having seizures, vomiting and coordination issues and saying ‘ah yes, these must both be caused by the same thing’

Those boxes help us get the support we need for our kids.

You can put my son in whatever box you like if it means he gets his needs met.

They really don’t, need does .

Yes, and what I’m saying is those boxes should be based on need.

Which would actually help your children too, as they’d share some boxes with mine.