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

You absolutely should not feel a fraud. If he's autistic he's autistic. Just like NT people they are all individuals with individual needs.
My son now holds down a job, lives independently and travels abroad ( when he's got the money!). At 5 he started in special education still in nappies and liable to spend the morning looking for things to sweep off surfaces or, if liquid, pour on the floor. HFA or not?

That’s horrendous for the YP and their family.

It is a hard decision. And one where there isn’t a right answer. Neither is perfect. Both have risks. Both can be traumatic for DC and all involved. It also isn’t always one or the other even for the same individual - both can be necessary depending on the intervention/investigation.

While categorisation is rarely perfect, it's at least more informative than lumping everyone together with no distinction. There could be basic levels used to provide a general overview, alongside more detailed medical reports for schools or others who require more depth. It works for other conditions. Having agreed upon terms to quickly give people a general idea of what to expect would be helpful, as the label can currently mean almost anything. At present, if someone says they or their child is autistic, it provides very little useful information because the diagnosis encompasses everyone from some of the most successful, high functioning people in the world to some of the most severely disabled who need 24 hour care, and everything in between. As I said on the other thread, we already classify many other conditions like cerebral palsy, learning disabilities, and hearing or visual impairments by levels of severity. Why is autism so different that people seem to object so much to the idea? Even if we don't distinguish between different levels of severity of autism, there'll still be a line drawn between people who have many traits of autism but not quite enough to get a diagnosis, and those who are very similar but have just enough traits to be diagnosed, and that will be imperfect too.

Thanks for answering. That makes sense.

It’s usually a co-existence of autism and LD that means the term profound is used.

Where the debate differs is if it’s acceptable to refer to those people as profoundly autistic or if profoundly disabled is more accurate, as the LD isn’t autism in itself. Really, that’s just semantics IMO.

Personally, I would be happy for that co-existence to mean someone was labelled as profound, in whatever format “acceptable,” if it meant that the level of need was recognised and catered for effectively.

@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.

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.

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

@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?

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?

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.

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.

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.

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 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.

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 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.

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 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.