Profound autism

Profound autism, is it real, or is it just intellectual disability with certain autistic features? People with intellectual disability, who are also talkative and extrovert and keen on social interaction are not called 'profoundly neurotypical'.

This sort of thing, like assignment of species in human evolution, tends to switch between 'lumpers' and 'splitters'. The 'spectrum' saw lumpers in the ascendant, perhaps the pendulum is swinging the other way?

Martin said:

Profound autism, is it real, or is it just intellectual disability with certain autistic features

I was thinking about this, I think you want to see an example to prove it's existence?

I would reccommend viewing 'Inside our autistic minds', I think the first episode, it features Murray, who is I think, profoundly autistic, non-verbal but it is obvious he is also highly intelligent and thoughtful too. 

This would go against the profound autism definition though. Low iq is one of suggested criteria.

Understood ArchaeC 

Personally I think that scientists and clinicians alike need to be a bit more creative about what they diagnose and call out social problems by it.  Say for example a GP who regularly sees an individual with depression and anxiety might join the dots for wider social issues for that person, e.g. for some this might be a diagnosis "out-of- work-itiss" and prescribe that the person should be supported to find meaningful and worthwhile employment that they are happy and able to engage with...

Or "undersupport-itis" maybe...

That is so, yet it is a shame that the NHS and social care has deteriorated to the extent that researchers have the need to make the diagnosis fit the support system rather than the other way about.

I have empathy for the mole... :-)

There is an amusement park game called "whack a mole" that springs to mind as a useful metaphor for this situation.

There has been a push from parents of as they define profoundly autistic children that the support for them isn't great enough as they can't leave their child alone at any point ever, not even to go to the toilet. Not being able to gain the necessary supportive equipment due to their current diagnosis not meeting the criteria e.g. for sleep safe beds so that they are safe at night. I think it is probably for this reason it is now being considered.

But I agree, it does seem to overcomplicate autism. And as I've said before. What happens to the support for everybody else concerns me if this is brought in.

A lack of collaborative effort and organisation yes :-(   - however this study can't be blamed for that ArchaeC 

Expecto_Patronum said:

I think the point is those with autism that are non verbal and have significant intellectual disability need round the clock care and supervision to keep them safe etc.

I completely agree - for this reason 

Phased said:

does it matter in this context?  - to quote the article "The category is intended to help governments and service providers plan and deliver support, so autistic people with the highest needs aren’t overlooked. It also aims to re-balance their under-representation in mainstream autism research.what counts is are they treated fairly and appropriately supported by society."

Phased said:

n so far as it is necessary to make personal, valid assessments of what a fair adjustment is then each individual and their circumstances one would have thought would be different and furthermore need updating over time.

I too am concerned that it might mean cut off definitions for who gets support might leave some excluded who have more "invisible" disabilities but for whom support of a different type and scope is necessary for social equality.

However making a blanket definition that has inclusion and exclusion criteria might make the case for adjustments stronger and easier to enforce for people and I really wouldn't want to put anything in the way of that.

So this means the study will lead to autism experts assigning a diagnosis of ‘profound autism’ when the diagnostic criteria for some include learning disabilities that aren’t related to autism? 

If the people who need the most support get it, that is a good thing, but it seems to complicate ASD more than it needs to. 

Governments could rethink how they are going to identify those people who need the most support. Information can be shared almost instantaneously so it seems there is a lack of joint up and imaginative thinking.

This is the part I'm really unsure of. I'm not sure how accurate iq testing is to begin with.

I guess 50 is significantly low though so perhaps easier to determine. I don't know.

This is the part I'm really unsure of. I'm not sure how accurate iq testing is to begin with.

I guess 50 is significantly low though so perhaps easier to determine. I don't know.