Should those with severe autism have their own diagnosis. Thread 2

[Cubic]

The first thread was full of debate of this emotive topic. Most posters engaged in good faith. Many of us want to have this discussion and that includes posters for and against.

It's worth saying that some posters may have autism so please bare that in mind as some posts could be mis interpretated or written in a way where it appears abrupt and that isn't the intention.

There was a notable derailment in the last thread and it is suggested that if/when this happens it is ignored.

The poll at writing was 91% in favor of a seperate diagnosis after over 1000 votes.

Yes but this states the ground diagnosis is autism occurring WITH intellectual disability. High care needs and no useful communication essentially. So it's not just 'autism presenting differently' it's autism in individuals who also have this specific profile. Of course it gets sketchy, is the child incapable of communicating because of autism or cognitive difficulties.

If anything this is starting to let me see the side of 'all care simply needs to be patient specific needs focussed' and not about the diagnosis.

It is a complicated question.

They’ll have to start measuring IQ if profound autism becomes a separate diagnostic category, won’t they?
I imagine that isn’t easy if someone also has serious communication and social differences which are an intrinsic part of autism.

Yes i fully agree and in an ideal world everything would be needs based and everyone would get their needs met.

I don't think that will happen or at least anytime soon.

Having a seperate group will help with research. ( I believe autism is likely lots of different conditions put together atm). This group are markedly left out of research as it's difficult to include them and consent is an issue. Having research aimed at this group may lead to findings that help. These findings may or may not help others but that will help to define futher.

It'll help with planning for future services and as pp's have mentioned it will help in day to day life with appointments and asking for adjustments.

I think it depends how you consider autism it's really a specific cluster of traits which sometimes have different underlying causes. So as a clinician I have patients with genetic conditions and I'll read the diagnosis and know it's likely the. Hold is autistic, my own child has a physical medical history which makes me uncomfortable considering his diagnosis as autism because although he has a lot of traits I can't help but wonder if they come from the trauma his brain suffered, although his MRI suggests otherwise but then seizures can impact how the brain reacts to stimuli even if the MRI is normal.

I honestly think it might be more that autism ISNT a condition but a symptom

The EP/CP assessed my son but said he didn't think the IQ score could be held as accurate because of his autism/ presentation/ communication. We had to talk to the paed with the report and he then spoke to ot/slt/ school and was able to diagnose LD on the basis of his presentation/ abilities.

It was remarked by one professional that this should be taken for granted given the extent of his needs.

My son goes to a special school and is in a class with others like him. The info on the class reflects learning disability but only one other child has the diagnosis, they all have autism.

I think cognitive profililing for all those with autism is a good idea. Many have issues with memory, spacial awareness etc and would help support needs and provision. I think that would be very costly in terms of assessment and to la's/ schools for ehcp's.

I fully agree. Research is part of why i think it's a good idea. I don want to know what caused my son's disabilities. If it helps others in the future too that would be brilliant. It would save a lot of heartache.

I 100% agree.

My nephew is very severly autistic, he will never ever live a "normal functoning" life.

Then i have many friends with autistic children, very functioning, mainstream schooling.

There should be an absolute difference and it should be clearly defined with a structure on the level of care needed with a pathway showing this.

I feel like care is so diluted at this point that noone is getting what they need especially those that are priority.

Yes I was a bit confused by this. I dont especially see why its better than saying 'asd with learning disability'. I guess its two words not 4?

I suppose you could have 'mild' autism and mild learning disability. They definitely grade learning disability as mild, moderete, severe and profound.. I know levels in autism are very controversial. I guess profound would indicate both aspects were significant and intertwined.

I dont have any issues with a rebrand if it helps people. I am not confident it would help as I don't trust a government deciding profound people don't get education or certain healthcare. Education rights are pretty recent.

I also genuinely thought there were people who needed 24/7 care due to autism alone (ie they had an IQ over 70)

I had heard of lots of people where autism was the only diagnosis, who said the issues like non verbal or wearing nappies were solely caused by autism. but lots of other people said that was because the IQ couldn't be measured or noone looked any further after asd was diagnosed and they would be scooped up into the profound diagnosis anyway so they could access services.

It feels like a bit of refining is needed to make sure it achieves what people hope it achieves.

I also genuinely thought there were people who needed 24/7 care due to autism alone (ie they had an IQ over 70).

Yes, there are autistic people who wouldn’t fit the profound autism category who require high levels of care and 24/7 supervision or assistance.

This is one of the reasons splitting autism into different categories is controversial.

My nephew does yet have an autism diagnosis, it is however as clear as the nose on his face and has been since he was a baby. He has however had educational psychologist input and the report states moderate learning difficulties and following his own agenda and makes it clear there is expectation of an autism diagnosis once assessed.

My son was verbal early, motor skills early, I have always thought he had ADHD not because he's in any way badly behaved but because he has and always has had a ridiculous energy level. Even compared to all his active boy friends of the same age from our baby group. All boys who now have ASD and ADHD diagnoses actually, because we all ended up in this right wee group reassuring ourselves that our boys were just super energetic and advanced and that's why they couldn't tolerate coats and would deliberately face plant puddles and eat leaves etc etc. would run in rings wooping instead of taking part at mummy and me classes. There's a definite difference between the presentation of my son and his pals and my sisters son and the children we encounter who are low or non verbal, not yet toilet trained at 7/8 etc.

It's a very complicated things and I guess as humans we love to categorise things.

I think it's really difficult to work out if the autism is so bad that it impacts assessing IQ or if IQ is so low.

As I said in one of my earlier posts I do know of yp who only have autism diagnosed not LD but are similar to my son. My son wouldn't have had LD diagnosed if we hadn't have asked for it to be. Until then we had no choice but to put his needs down to autism alone.

I think splitting it into several categories would be a good idea. Profound autism for the most severely affected who also have significant learning disabilities, then maybe also 3 more categories similar to level 1, level 2 and level 3 for the rest like they have in america.

I understand this. Although I don’t think it is limited to those with what is being termed profound autism. Many who have autism who don’t fit that criteria are still excluded from services aimed at autism or wider disability because of how their autism presents.

That specialist dentist sounds beyond rubbish. I have 2 DC under the special care dental team. One has ASD (significant needs, will need 24/7 care for life, needs support with all ADL, has 2:1 EOTIS package but does not meet the criteria for profound autism as doesn’t have a low IQ) and one other complex needs. Neither would cope with what you describe. DS1 has never sat in the dental chair and probably never will. Nothing goes in his mouth (he is a biter) and he only has an examination whilst under GA for other things. DS3 didn’t sit in the chair until he was a teen and even now it is only briefly. Neither cope in the waiting room. We wait outside in the car, which brings its own problems but is easier than the waiting room. When the dentist is ready they call me and meet us outside.

Similar for bloods. Neither would cope if the only adjustments were what you describe.

I also genuinely thought there were people who needed 24/7 care due to autism alone (ie they had an IQ over 70)

This is the case for some.

For bloods and injections we get sent to a hospital, he has the pre meds that are given before a general to sedate but not the full general then they do them. For any dental work that is done under general at hospital. They try to do as much as possible at one go to reduce risk.

We also have as much done at the same time where possible. Microsuctioning DSs’ ears is also something that is always tagged on to GA for something else.

For bloods etc. we go for restraint rather than medication. It takes lots of people now, especially for DS1 (he has a port but it doesn’t always bleed and he needs restraining to access it), and is traumatic, but DSs have medical needs which requires regular bloods and it isn’t suitable to medicate every time.

To respond to the absurd posts at the end of the last thread, once again:

None of the listed articles in your link to the Lancet as far as I can see identify any actual biological or medical research providing any evidence whatsoever for your assertions that there is a separate category of autism/ condition that is different to that defined by the existing identified biological commonalities between all autistic people in terms of genetics and brain structure.

These are a list of studies about behaviour/ symptoms/ social issues, not medical studies providing any evidence whatsoever for your assertion that there is a separate condition that could be called “profound autism”.

There is no medical research showing any biological markers whatsoever to support this claim that there is a separate category of autism called “profound autism”.

Per many comments on the previous post, it’s already been pointed out to you OP numerous times that there is no scientific evidence at all to support your wish to create a separate condition called “profound autism”. It’s pseudo-science.

There is no medical research showing any biological markers whatsoever to support this claim that there is a separate category of autism called “profound autism”.

Biological markets aren’t typically used to diagnose autism, so I really don’t know why you believe biological markers are necessary to define a subset of it?

There were many people on the last thread waiting for your scientific evidence of what is a definitive cause of autism. Many of us would like to know especially if the cause has been found so we can at least let the nhs know. Just throwing a few medical journal names around doesn't cut it.

Pp makes a very good point and it is something I have eluded to also on the last thread. Autism isn't diagnosed by biology, it is diagnosed usually on symptons by a group of professionals.

@ProjectHailMary Thanks for providing a list of journals but I'm asking you to provide the specific source of evidence to back up your point that profound disability of autistic individuals is categorically not caused by autism?

For anyone who hasn't read or taken part in the last thread; there was a series of posts yesterday which haulted the discussion and caused some upset. It was discussed that maybe ignoring some posts is for the best to keep the thread on track.

And what if you don't fall into those near little boxes?

The restraint vs meds is a difficult choice. I thought meds were best for my son as it's not as traumatic as you say but i was speaking to a dad of a yp who had angleman, the yp sadly passed away during a general for a tooth extraction from complications. Everyone knows general's have risk but I think for most it gets weighed against the need. We're looking at it again. I'm not sure what we will decide.

I have a question; hope it’s ok to ask here.

I know that autism and LD can play a part in the presentation for some people. So are there people with profound autism who don’t have any LD?

Thanks in advance and hope that question isn’t offensive in any way.

ETA sorry I see others are discussing this already above.

@SweetRedJam
The definition of profound autism as it is suggested would require an intellectual disability.

But there are other autistic people without an intellectual disability, but with complex needs, who need a lot of support and who will probably never be able to live independently.