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 One of the reasons given is that their autism would be seen as "mild autism" and support maybe withdrawn.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

Every child should be entitled to the support they need to meet their potential.

The right support at the right time means that some autistic children will grow up to be able to live with some independence and contribute to society. Providing the support they need will save money long term. Not providing the support for them leaves them more disabled and less able to contribute to society.
They should get support

That's not what's happening here. A group of people who are NOT profoundly autistic are attempting to introduce a new definition of what being profoundly autistic is. The non-profoundly autistic people are specifically designing that definition in a way that means that no one who could possibly be in that group can possibly have a view on the definition.

That's my issue - there are people who would be massively impacted by this distinction who can actually express an opinion, but they're told that because they're capable of having an opinion they can't input.

They are not the only ones who should get to input, but no good is served from ignoring them.

Yes, but look at the differences in increases between the age groups. Uta Frith was right. The increase in the more severe types (if age can be taken as an indication of that) is much more moderate, as seen in the top figure shown here (from the paper you linked).

You said: "Maybe her voice would be better heard had she not patronised parents of communication limited children by asking if they’ve considered pointing at things."

You're welcome to dismiss condescension (as you interpret it - again you are choosing to interpret it that way and that's a question of communication style). You're taking that further and dismissing her voice because you don't like the way she communicates. It's fairly ironic on a thread about the autistic experience!

It’s clear that your viewpoint is incredibly different if you have a close family member who has profound autism, doesn’t know if it’s day or night, doesn’t know if something is food or inedible, doesn’t know their own name, doesn’t have any understanding of using the toilet, that you know what profound autism is and why they have to be advocated for.
And why people who are able to advocate for themselves are, by definition, not profoundly autistic.

Hard to make out, but I think that's showing a 3x (or possibly more) increase in autism diagnosis in under 5 year olds over 20 years. Yes much lower than the other categories, but that's still a massive increase.

This study supports an increase in the prevalence of children with profound autism (using the criteria on this thread). Yes not as big as non-profound, but still roughly 2x in 16 years. That's a big increase of diagnoses. I'm sure we can play study ping pong, and I'm not educated enough to judge one against another, but there is definitively a body of evidence that shows the number of cases of people diagnosed with the more 'severe' end of autism is increasing.

"During 2000-2016, the prevalence of non–profound autism increased from 3.94 to 14.26 cases per 1000 children aged 8 years; the prevalence of profound autism increased from 2.68 to 4.59 cases per 1000 children aged 8 years"

I have attached the last comment I sent to that poster. You’ll see that I very clearly said that the reason I hadn’t replied more strongly to “what about sign language” was because I was giving her the benefit of the doubt that her needs were affecting her communication.

I am not going to bang my head off a brick wall with you.

I “dismissed her voice” because it claimed to have an experience that it does not.

The very fact that someone is able to compose their thoughts and feelings into a typed response suggests they are not in the same position my child is. The fact that they were able to do trigonometry at 9 years old means that they are not the same, because my overgrown toddler cannot.

If you can’t see that those two things are different, I cannot help you. I however will not apologise for being able to recognise that “trigonometry at 9” and “shitting up the walls at 9” are not the same thing.

It's not an excuse to exclude people from the discussion about the definition. Particularly not on the basis of the argument given on this thread that 'if you can communicate now, then you obviously never actually were profoundly autistic in the first place, regardless of whether you met the criteria when younger or not'.

And if she was smearing poo while doing trig in her head does that make her more profound or less?

Maybe smearing the poo is how she got from trig in her head to trig on walls

No it claimed to have an experience you refused to believe it had. You determined that she didn't have the experience despite having multiple statements from her that she did.

If the definition is that people with profound autism must have a severe intellectual disability, then clearly that excludes anyone who can advocate for themselves. But as previously commented, some people on this thread have said that shouldn't be a requirement and instead the definition of profound autism should include that group but should also include people without intellectual disabilities who are non-verbal of minimally verbal. The latter is the group that can potentially have a view, particularly if they have been able to develop communication skills.

I'm not clear why that group should be excluded from the discussion or why the intellectual disability point is seen as key to determining the impact autism has on someone. Someone with an IQ below 50 is going to need significant support regardless of whether they are autistic or not, and I haven't seen a decent explanation of why that group needs to be specifically carved out for autism.

It’s very unlikely that someone with such cognitive impairment that they’re chronically 9 years old and developmentally 2 years old is doing trigonometry at all.

The curriculum doesn’t teach EYFS algebra for a reason.

Just eyeballing, but looks more like 2x to me.
Compared to a 15x change in adult diagnoses, that’s a huge difference. Frith said that those diagnosed under 5 have only showed a moderate increase in diagnostic rates, and that diagnostic rates in those with accompanying ID were stable. She’s an emeritus professor in cognitive development and has worked in autism research for decades. I think she’ll have a fair idea of the figures tbh.

It’s a good reason to separate the diagnosis though.

You’re just not seeing it at this point. I did not not see it, it wasn’t the same experience.

If you were complaining of migraines and unable to function because of them, and I said “do you know, I know what you mean, I had a headache 50 years ago but managed it. Have you considered paracetamol?”

You would quite rightly tell me that that, is different.

Not that my headaches didn’t exist, or that I wasn’t bothered by them, but that they were not migraines.

I agree it's a massive difference (and happy to accept your 2x eyeball over my 3x one).

But there are good explanations for why diagnosis has increased dramatically in older age groups/less 'severe' presentations. The fact there's been a 15x increase there doesn't stop there being a 2x impact in the more 'severe' presentations, but it can sometimes disguise it. Effectively there's a lot of noise about the 15x which means that the 2x doesn't get as much attention as it should.

I am seeing your point. I disagree with it, because my position is that there is no reason to split out a group of autistic people on the basis of their cogitative ability alone. There can be a case to split out a group of autistic people who are severely impacted and are minimal to nonverbal and within that group of people you have some who have developed ways to communicate and therefore their voice is important.

There could I suppose be a diagnosis for a condition which has significant intellectual impairment and also autistic characteristics, but if it needs to stand alone it wouldn't be autism. Cogitative ability has never been one of the diagnostic criteria for autism.

What if the person had migraines 50 years ago and found what worked for them was X so they suggest x. Maybe you tried X and X didn't work for you. That doesn't mean the person didn't have migraines it just means they got relief from X but X didnt work for you. Not because yours wasn't also a migraine because not all people respond to medication in the same way.

That doesn't make the person wrong for suggesting x
In the case maybe because of their disabilities they can't process and understand why what worked for them isn't working for you but that doesn't make their experience less valid or real

Her experience is different to your child's experience. It doesn't mean she's not (or wasn't as a child) profoundly autistic. My experience is different to your child's experience. It doesn't mean I'm not autistic.

If people want to create a category of people who are 'profoundly autistic' the biggest negative impact of that is on the group of people who are severely impacted but don't fall within that definition for one reason or another. That group needs to be involved in the discussion and their experience is no less relevant to determining who is most severely impacted by autistic people just because they have found a way to communicate.

You think there’s a cure for profound autism?
You think the parents just could never be bothered to trying anything?

For what it’s worth for my son all had lots of diagnosis and test came well before his ASD label which was really just an umbrella label.

i think that this is relevant to have these specific scores

expressive language 1st percentile ( I think this is now wrong)

receptive language 1 percentile ( repeat tested until aged 15 or thereabouts) He forgets instructions if more than one command - he has learnt to record people

semantic and pragmatic 0.75 - this is his ability to understand the meaning of what people are saying and his ability to navigate socially. This is really up there in disability and he really struggles to fully understand what people’s intentions are so this brings a lot of suspicion etc. I would class this score as profound .

Motor coordination 0.5 - last tested at aged 17 so seem a permanent thing. I think this adds to the anxiety eg walking on roads as he feels overwhelmed. So he can walk and run but he has issues with balance / coordination and the occasional fall. We just take care with him on country walks etc also very steep steps. The impact at home is he is on zero cutting rule as I can’t stand the anxiety of allowing him to chop and he slices his fingers. He can be really heavy handed and careless. He can also be impetuous. I did some cooking with him ( as he likes to try ) and it’s about getting him to slow down and also holding the bowl. Frankly it’s like he’s about aged 7 when we do cooking together

SPD

working memory 2 and 4 percentile

executive functioning also really low at something like 2 or so percentile and this is the main issue think the ability to plan things and take control of his life which is completely absent. It’s silly things like working out how much to put on a tray or onto a paper plate.

Added with bowel disorder ( x ray shows an extended bowel)

now going to neurologist re odd sleeping but had profound fits as a child

associated anxiety specifically I think due to overwhelming fear of outside spaces when alone eg at aged 18 he had a complete fit about streets having too many bins and signage etc as he walked into things. He still holds his dad’s shoulder or arm when walking with him but not his PA

with these scores to me it’s obvious he is middle of the road ASD which has significant impact on ADL and indeed that was what was mentioned

He is clearly not profoundly autistic but holistically he has very complex needs that interact and combined to intensity his needs. So for intended with tech it’s having to overcome one need without creating issues with another need eg voice to text to overcome writing does not work with a stutter

So the point is that it is possible to have a more detailed snapshot of someone’s issues

My son was assessed by NHS SALT / OT etc as well as the ASD team

For me this specific snapshot is pretty accurate except on expressive language ( I think it has to be better than 1 percentile so I don’t understand why this test was repeatedly so low ) but he does have false starts/ stutter and word retrieval issues so we gave him an extensive vocab. He can struggle win group work. I think anxiety might have impacted the many tests.

His iq is low at something like 85 but I think that this was unfair as he can do algebra but can deduct easily 3 from 2000 - he struggles with sequencing etc so Maths was hard but he was tutored for ever to get a 4. I think that iq tests she a lot of sequencing and pattern recognition. He can understand and memorise Shakespeare etc but sequencing is an issue for him. He gets extremely anxious in shops with having to use basic maths skills.

He can deregulate and needs support to re regulate when overwhelmed

He talks to himself a huge amount and stims a lot in public at times.

Strengths

He has an amazing long term memory which is abnormally good and this helps learning

He has a peculiar visual memory / acuity and can spot things or notices things others don’t.

His thinking is outside the box and original

If everyone had a more detailed passport of needs it would help. This in essence gives the social worker all the info they need.

This provides a detailed snapshot and shows the spiky profile

That’s true, but not all of the 0-5 group will turn out to have profound or severe autism. Some will have speech delay that will get them noticed (maybe more so than decades ago?), but no intellectual disability, and they will often develop speech later.

Frith said the diagnosis figures for those with autism plus an ID were stable. I’m inclined to believe her.

No that's absolutely not what I have suggested.

It’s interesting that that people who are against the reclassification are people without close relatives with profound autism.

It’s almost as if they see the reclassification as a threat to their own/ child’s identity. That they see it as a threat to the validity of their own/ child’s diagnosis.

The gaslighting over parents advocating for their non-verbal children is particularly repugnant.

My issue, which I have said all along. Is purporting to have had the same experience and giving advice from that position, when you haven’t had the same experience.

If someone comes on here and tells me that at 10 years old they were 3, but they’re all caught up now and this is how - trust me, all ears. But that’s not what happened.

Her experience, and yours, are valid. They are however not the same. So I see little value in advising someone from a position you’ve never been in.

Out of interest, why do you believe it would be negative for you to not be included in a category with those like my son? With no offence meant to my own child - why do you want to be?

"My" study (a US one) bears up the idea of a 2x increase using a definition for profound autism. It is around that ballpark, or at least some believe it's about that ballpark.

It also matches up with everyone's anecdotal evidence - there is an increase in kids with severe needs. I'm not sure I buy the idea that 20 years ago these were just locked up at home - it was the 2000s not the 60s!

But we can agree to disagree. I haven't done enough research on this one to understand where Frith gets her figures from and desperately trying to stop myself going down an rabbit hole on that one! I'm sure she has some basis for her position and so there must be disagreement between studies.