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 One of the reasons given is that their autism would be seen as "mild autism" and support maybe withdrawn.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

Everybody knows what someone means when a parent says their child is profoundly autistic.

Not necessarily. It tells people the person needs and will always need a significant amount of care, but there is still a range of presentations. For example, it wouldn’t tell you if someone is toilet trained or not, or if they need a wheelchair/SN buggy/harness when outdoors, if they can eat orally, if they are a sensory seeker or sensory avoidant or both depending on the situation.

D o you besmirch all groups of people when you notice one or two in the media commiting crimes?

You cannot seperate what is autism and what is learning disability. Where does autism start and his ld end? Does his ld make his autism worse or his autism make his ld worse?

My Ds only has an ld diagnosis because we paid for an inde EP/CP for SENDist then chased it with his local professionals. If we hadn't he would just be severely/ profoundly impacted by autism...on paper.

Which are the autistic traits that all people with autism share?

Persistent deficits in social communication and social interaction across multiple contexts

Restricted, repetitive patterns of behavior, interests, or activities

Symptoms must be present in the early developmental period

Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning

These disturbances are not better explained by intellectual disability (intellectual developmental disorder) or global developmental delay

Most of these could all be true for the majority of the population.

But she doesn't want her son to have a condition that can be associated with people who are vulnerable to negative influences because he wouldn't be capable of planning a course of action to lead to a crime.

If she wants to argue that is a core requirement of a profound autistic diagnosis, then it's a fundamentally different condition to autism. You can have autism and that, but if you say that is a requirement for someone to be autistic the entire premise of what has been considered autism for over 50 years is blown apart.

I don't think you know what clinically significant means.

I think you like to convince yourself that you’re superior to people you disagree with.

I mean, that’s clearly nonsense though. Saying that the majority of the population could meet all the criteria for an autism diagnosis is just absurd.

@Cubic - this (" My Ds only has an ld diagnosis because we paid for an inde EP/CP for SENDist then chased it with his local professionals.") is shocking and part of the problem. How can they properly assess for autism without also looking at whether there are other issues at play as well or alternatively. They're actually required to confirm that as part of the diagnosis - how can they do that if they don't assess.

I don't mean this as shocking for you or anything you did. I mean as reflection on the entire system and how its failing the most vulnerable.

My diagnosis is a private one and they required cognitive testing as part of it, as well as extensive background to assess for flags for other conditions. Not relevant to autism but as an example I was asked in detail about childhood trauma, which is obviously highly relevant to rule out CPTSD as an alternative to an ADHD diagnosis.

Yes, autism diagnosis is part of the problem. It uses autism as a single name for different needs and doing so masks the other needs.
It's known that on the "without global delay" front people with autism have issues getting support for their mental health issues - because once they are autistic, that's it.

I'd dare a guess that the severe global developmental delay is more defining for your child than the core autistic traits.

What are you basing that conclusion on? I'm not clear what I've said to make you think I think I'm superior to you.

I think I know more about this area than you do (how an autism diagnosis works) and I think you keep using incorrect information to try to 'win'. I don't think I'm superior to you.

I’m not trying to “win”
I have a different opinion to you.

It’s interesting he went this direction, because in his first paper describing the children he said the condition was innate.

@cubic - please don't take that as me suggesting your child (or anyone else's diagnosed as autistic) is incorrectly diagnosed. My concern is the system coming up with an autism diagnosis and then just stopping there as if that's the only thing that could possibly be going on. Maybe it is, but there's no way to know without checking!

This is from that paper - he manages to say both at once. I read that he changed his position on it being parenting later, but I haven't gone into that.

At least it was both parents' fault not just the mother's!

Ok. And I think you're wrong and can't justify that opinion. Doesn't make me superior to you. I'm not superior to anyone.

Totally agree op, severely affected autistic young people with learning disabilities are being let down with the lack of services and placements, due to autism being the new fashionable diagnosis, in my experience.

Another spiteful thread where we're not autistic enough for the OP. How do you think it makes us feel? Nobody even is trying to compare me with your child, just freaking LEAVE autistic people alone. It's hard enough for us already without this.

My DS has other conditions diagnosed which are commonly diagnosed alongside autism eg hypermobility.

He regressed when he was 18 months old, losing all skills that he had developed including a few words. It was like a switch had been flipped. He was there then gone. He started stimming, flicking his hands, vocalising etc. This is a common theme with those who have severe autism. They call it regressive autism.

He was diagnosed at two years very quickly via MDT ADOS. The psych even detailed severe mental impairment in her report knowing it would make dla easier to claim later. It was very obvious that he was autistic (old fashioned autism). The LA statemeted him at three and he had full time 1:1 in nursery. This was before the DSM changed and before CFA 2014. He was actually a "pathfinder" for EHCP's when we changed over.

His autism impacts him so much that we see his intelligence as being masked, I actually think he can understand a lot more than what he is given credit for. We looked at the LD diagnosis to ensure access to the teams he will need in adult services when he leaves education as we were paying for a EP/CP tribunal assessment and report anyway. It also helps with transport between 16-18.

Our LA and nhs trust do not diagnose or routinely investigate the cognitive profile of those with autism, could you imagine the impact to EHCP's and the cost for provision? This is similar to how camhs reacts to the mental health of kids with autism locally.

Yes, though he said the children’s aloneness from the beginning made it difficult to attribute the whole picture to the parents, and also that the condition was innate, so I think the blame aspect was certainly less in his first paper about autism.
He did say the parents were highly intelligent, but also obsessive and tended towards coldness. Perhaps Broader Autistic Phenotype or autism as it would be diagnosed today for at least some of them.

You read in more detail than me - I skimmed to the end bit :)

What you are describing as profound autism sounds like autism and learning disability. The learning disability explains the need for life long care. All support services are needs based anyway, it's just ignorance from the general public that's the issue. Education, social care and health professionals are all well aware that there is a wide spectrum and their assessment and support is tailored to the need, not the diagnosis.

What a ridiculous thing to say

These are the criteria for an autism diagnosis, you have to be significantly affected in these areas to be diagnosed

This is the autistic baseline, then add in severe sensory issues, developmental delay, low iq etc etc and you get differences, these are in addition to the baseline stuff

You need to read it again, and slowly