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 One of the reasons given is that their autism would be seen as "mild autism" and support maybe withdrawn.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

It makes a lot of sense.

My son and I had the CMV virus one month post partum and I’m convinced more works needs to be done on exposure to virus during pregnancy combined. with genetic disposition eg only genetic disposition you get it milder but if combined with neonatal or during pregnancy virus you get is worse.

The fact that he can be left alone at all, for any length of time, and not come to severe harm is one of the markers of someone who doesn’t have profound autism.

Yes I agree with you. However I am wondering where my 11 year old fits into this. He was showing obvious symptoms from birth and diagnosed with level 1 autism aged 6. Currently at mainstream secondary school with 1-1 in lessons and small group supervision at break and lunch. Very obviously different and in my view extremely autistic but doesn't have learning disabilities.

Neither have you or you wouldn’t be typing proficiently and holding a conversational debate on an app you had to register for.

Do you understand people with profound autism can’t do any of the above?

Op I've read all your posts and I think you're viewing 'milder' autism as too much of a mental health struggle, and not acknowledging enough that it is actually still a diagnosis of cognitive impairment, even in less severe cases.

I don't want to type out a whole profile describing my child but for example, one single thing about them is that they don't understand sarcasm. This is because autism impairs someone's ability to pick up on social cues and changes in tone of voice. That has nothing to do with mental health but is part of a hidden disability.
Another child with the same diagnosis will have much more severe communication struggles and I understand that, but it's all under the umbrella of communication difficulties, which is one factor that goes into diagnosing any child with autism.

There are other factors like sensory issues, and evidence that some autistic people have a heightened sense of smell for example, regardless of intelligence. I am tired so probably not articulating very well but what I mean is, autism as a whole isn't the spectrum. It's like a particular set of struggles and each individual struggle is a spectrum in itself. That's why it's so complicated to categorise.

I tell people my child is neuro-diverse in a mainstream primary school, in the absence of better language to categorise them. I hope people get the gist from that roughly where they fall on the spectrum. I would describe a child with severe needs as having a learning disability.

This is the kind of thing I mean.

it’s also untrue. PIP and DLA are not diagnosis based, but needs based. Evidencing care needs is what determines eligibility, not diagnosis. A diagnostic report can form part of that evidence but a diagnosis doesn’t lead to financial support.

My undiagnosed dc is on a higher rate of dla than my diagnosed one.

I feel as a professional that autism is a bit of a vague diagnosis now. It’s like asking what stage of English language learning someone is in and being told they’re French. Not very helpful for supporting them.
i think it’s more helpful to list strengths and support needs rather than this diagnosis when you work with it.

Do you really think a 16 year old who smears their faeces and has the ability of a 24 month old just needs to be taught some sign language? And then they will be able to pop off back to mainstream? Are you aware how insulting your posts are?

Totally agree it's madness to have the same label .children who cannot speak or very limited not toilet trained low iQ are a world away from those with old aspergers it was easy everyone knew the difference aspergers /kanners it was easy but more and more are being included under the banner .Pda for one has nothing to do with traditional autism

I'm disabled myself but don't have autism or learning disabilities so I apologise if this suggestion is upsetting to anyone but is there an issue with saying they have autism and a profound learning disability? I would always have seen the level of disability being described here as a profound learning disability. Even if this hadn't been officially diagnosed (hard to believe), I'd say it was fairly obvious that that was what it was on a very general level - the level that your average member of the public would understand.

@IrishSelkie Your spelling got markedly worse then improved again. Odd.

OP I agree, my youngest was on the verge of being diagnosed as didn't speak until 4, very restricted diet, randomly run off screaming etc. We didn't pursue it but he saw an educational psychologist at age 8 and they said if he is autistic it's meaningless going for a diagnosis as he is so "high-functioning" . He's quirky, hugely bright , independent, social , just a bit of a fussy eater now. . He in no way should be under the same umbrella diagnosis as a profoundly autistic child. It's a slap in the face to the parents looking after profoundly autistic children, they need help , not me.

There is a queue for diagnosis , ( where I live - not in UK - an enormous wait for psychiatrists) that would be shortened if there was a sort of triage system. Not sure how it would work and assume there would be problems but is surely worth trying.I have also experienced this from the other side with a child that was diagnosed with 3 different things by 3 different specialists and is now barely functioning in the adult world. It's a stuff up every which way.

It could be argued that it’s not the same neurodifference though.

I have an adult child who was diagnosed with Asperger’s before the DSM was changed. My friend has an adult child that was diagnosed with autism before the DSM was changed.

It’s nothing like both having cancer but one having Stage 1 and one having Stage 4. It’s like one having diabetes and one having COPD. The problem with the change in DSM is (analogy) that they have told all the people with COPD that they have diabetes, yet none of their ‘symptoms’ fit diabetes. It’s ridiculous. However, many of the people are happy as they believe diabetes sounds ‘more serious’ than COPD and they want to get exactly what the people with diabetes get. This means their COPD is now not being optimally treated and neither are people who actually do have diabetes as now there are ten times ad many and the funding won’t cover anyone. Translate all that to the joke that ASD had become.

Except you don't need a diagnosis for DLA or PIP as it is based on care needs.

A child without a diagnosis may still receive high rate DLA based on their care needs.

What you are referring to is people with profound (and likely multiple) learning disabilities and autism. Not severe autism. Autism isn't a learning disability.

Why aren't you fighting for full diagnosis of global development delay and profound learning difficulties alongside autism instead of implying people who can communicate and live somewhat independent lives are not autistic enough to participate in your discussion?

Do your children have other diagnoses or are they being blanket diagnosed as autistic and you are just left with no further help for your children? @Chocaholick @SleeplessInWherever

@marmite123456 Why do you feel the need to attack @IrishSelkie? Not autistic enough for you? @LiviaDrusillaAugusta and myself won't be either.

@Cubic You were fully aware this thread would become just like any other, autistic adults being insulted and harassed by others because they aren't the right kind of autistic and don't have profound learning disabilities like many of their children.

Are you aware of how offense yours is?

Do you realise that people with "profound" autism can do those things? People with profound learning disabilities and autism couldn't do those things.

You are also incorrect about PIP and DLA for autism. Solely having an autism diagnosis that doesn't significantly impact "normal" life would not qualify.

Again you are wrong. He doesn't have profound learning disabilities.

Oh yes i agree and i should also point out it took many years to get this level of support after we hit crisis ,it certainly wasent offered on a plate

I do agree there is a stark difference between those who are able to communicate and have some understanding or their own needs and those who can’t/don’t.

however, I worry that the wrong person/people separating them into categories could be catastrophic for those who may then be seen as perfectly able in comparison. Most people in government are fucking clueless and would absolutely do this to pull support and save money.

my son started school age 4 probably in the ‘profound autism’ category. He was unable to communicate at all, in nappies, unaware of his needs in any way, he was presenting like a baby. The gap between him and his peers was huge.

things are quite different 5 years later. Mostly due to me exhausting myself pushing for the right support and not letting up.

Now, He can talk. He can use the toilet. He has friends. He can learn although he is a couple of years behind. He has an EHCP which enables him to access some support to learn and make progress (still fighting for this to be equitable to his peers). But the crippling anxiety, masking, sheer exhaustion just to get through the day is soul destroying.

Though on the surface I imagine nowadays most people would shrug and say he’s ok, when compared to someone with profound autism.

i worry that drawing a line between them and that could result in pulling support that is so desperately needed and hard fought for.

thats not to say I don’t think those with the highest and more complex needs shouldn’t be protected with their own diagnosis/category, I just don’t think the two should be compared because it’s entirely different levels of support that are needed to help them to thrive.

This has been done to death a million times before. You can’t level autism.Learning disability is separate to autism.

What nonsense. PIP is based on need NOT diagnosis. How many times does this have to be spelt out.🙄

I am not sure how services talk to each other and categorise things.

However, from senior school onwards my experience with my son I have never had an issue with having my DS needs acknowledged by the various agencies eg vulnerable for multiple reasons and high care needs. So my experience has been that no one challenges his care level needs, it’s just how many hours as an adult social care he should get eg how many hours will we allow him to be on university campus ( no one disputes that he has to be velcroed unless having a mentor session)

I get the impression that if social care needs go above a certain level at that point you enter into a discussion on how those needs are efficiently provided for eg in a supported housing setting with additional PA support as opposed to 24/7 PA support. We are not there yet as DS lives at home so his support is still anchored by what support I provide. At present he gets lots of hours as he is at university but I am worried that once he leaves and if he is still living at home he will only get say 35 hours per week ( including respite) and more care will fall on me and I’m in my 60s. If that is the case, I will refuse to care and he will have to go into supported living. Being a carer at this level has a profound impact on our lives. The lack of freedom and spontaneity hits hard.

There clearly is some shorthand in all the various reports that we have to indicate something so that we never have to reinvent the wheel.

Things were different in junior school where (in my opinion) a crazed headmaster tried to diminish his needs. As a consequence, we were only awarded 1:1 suoort in lesssons requiring recording. The upshot was that secondary school was grossly unprepared for the student they got and had to play catch up eg placing 1:1 support into Domestic Science as my son could not be let loose with knives and PE ( as my son had to go 1:1 off curriculum) and also positioning him onto the severely disabled ( special school attached j table at mealtimes so he had a safe space.

I think that this middling level of disability is more challenging to categorise when very young but as they become older the gulf between him and his peers widens massively.

For me, the issue as a carer, is the lack of recognition in the system for those who have to provide significant care. So I get the same carers allowance as someone who provides care to their disabled son/ daughter who left home to go to university and is not even living in the same city as the person they care for, They provide care by telephone. I mean this is ludicrous.

There was no suggestion that my son would go to university in a different city. In contrast, I have to accumulate my weekly respite hours if I want a short break with my DH and ensure that the Pa is suitable eg to cook, clean out sons toilet ( gets blocked by constipation) shave my son ( he leaves off bits) cut his finger nails etc and organise all his daily activities when not at university. If he moved to halls of residence he would need 24 hour 1:1 for his own safety. So to know that people can get carers allowance and not remotely have these restrictions on their lives is upsetting.

For me the simple divide is whether the disabled person can communicate their needs for themselves or they need everything communicated by others. how independent can they ever be.

When a person can eloquently communicate their care needs I find it hard to see that person as disabled as my son who can’t even tell the PA he is having an asthma attack and sticks his head out of the window instead. He can’t say ‘ I tried to cook, it was a rubbish meal and am really hungry’ instead he alarmed life skills by saying ‘ i want to die, I will kill my self’

At the same time, my son is a world away from those profoundly disabled who have little communication and smear their own poo. I don’t thing these needs are just different, they are more intense. I think it’s crazy not to acknowledge that.

For me, there is a point where ASD is really not an invisible disability. There is no way is presents in my son as invisible. Maybe when he was younger. Most people see it within a few minutes of interaction.

So for me the divide is the intensity of the needs. How often does the carer need to care eg is it a phone call once a day, is it minute by minute, hour by hour or is it several hours a day etc. So my son can be left alone for a couple of hours but needs checking in with after that.

If you don’t need daily care your level of needs are in a different category and frankly have less impact on the lives of others.

So putting it simply do your care needs impact others ( your carers) on a minute, hour, several hours per day or weekly or occasional basis.

And as for saying those without a learning difficulty in conjunction to autism don’t have severe autism. It’s just ridiculous and offensive.