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 One of the reasons given is that their autism would be seen as "mild autism" and support maybe withdrawn.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

We are facing a sudden tidal wave of autistic nonverbal adults with very high care needs and minimum executive functioning or understanding.

No, that’s not true. The increase in diagnoses is not among those with this presentation of autism.

Are you a memeber of Unique? its a charity that supports families of those with rare chromosome disorders .

Or not treated at all.

MH services often refuse to treat autistic people. They say autistic people need specialist support which they are not trained to give.
So they refer back to autism services who say they are not trained to deal with serious MH issues…

That’s not what I’m hearing from health visitors, nursery and primary school professionals at all. There’s been a lot of discussion about it on here. I also know myself of 5 children with non verbal autism - this is just at my children’s school and nursery. 5!

This thread just demonstrates the issue. We have a group of parents of children severely impacted by autism, who would consider that their children fall into any definition of 'profound autism' and then we have an autistic adult ( @IrishSelkie ) , severely impacted enough to get diagnosed 50 years ago (well obviously not with autism then). The autistic adult is being told their autism isn't bad enough for her to be considered 'profound autism' because she has learnt to communicate by typing. This is despite her saying she is minimally orally verbal.

The issue with introducing a 'profound autism' diagnosis is not with carving out the low support needs autistics like me. It's the fact that you're looking to carve out some very severely impacted individuals like @IrishSelkie. I then don't know what the plan is over time - do children get reassessed and get moved out of the category if they have found a way to communicate better? Presumably @IrishSelkie wasn't typing when first diagnosed, and no young child diagnosed would be. Or is it a label that people get for life (with associated concerns on setting low expectations).

There are some autistic people who very obviously would fall within any definition of 'profound autism' and many of the parents on this thread have children who would fit in that bucket. But there are many many more edge cases for people who have high support needs and for whom the introduction of a 'profound autism' diagnosis might limit their ability to access support. It's a race to the bottom - support should always be needs based first and foremost. If it is, you don't need to split the diagnosis.

It is true. There's a much larger increase in the diagnosis of autistic people with low support needs, I agree, but there is a massive increase in people with high support needs as well.

A lot of the increase in diagnosis of people with low support needs can be attributed to more awareness and historical underdiagnosis in certain groups. The increase in diagnosis of people with high support needs is actually more concerning because we don't have a good reason why.

I do understand why other autistic kids need support, I haven't said otherwise. You are mis representing what I have wrote.

The support is different. The children are different.

I should say, I don't know if there's a big increase in non-verbal autistic ADULTs, which would suggest that people who were previously diagnosed with something else are now being diagnosed as autistic. My comment was on the increase in diagnosis of this presentation in autism amongst children.

Well clearly and it clearly varies within the “term” a lot too going by the 1 of 3 you only need to have.

It’s ridiculous as somebody with an IQ of 51 and verbal would not be defined as “profound” but somebody who had a PHD who was non verbal would.

You can’t put autistic people
in boxes and it’s pointless anyway as they all need the care they need regardless of what label they’ve been given.

@fracturedupont

I would be satisfied either way.

Should my son somehow develop the cognitive ability and reasoning to be able to type his thoughts as effectively as the PP you mentioned, I’m absolutely fine with him being classed a lower level of need.

Similarly, if it was decided right now that he would remain somewhere within the category of profoundly autistic for the rest of his life, that’s what I actually expect will happen and I wouldn’t feel that he’d be written off.

I am realistic about his potential development, and the lack of it. I view his condition as lifelong, and have absolutely no inclination that he will ever be able to even try and engage in debate as the PP did.

If someone sat me down now and told me he’d never write or communicate in paragraph form having found his way into signing up for a forum, I’d tell them I know.

That's nice that you're happy with it. Are actual autistic people in that position happy with it? We have an example on this thread and her lived experience is being entirely dismissed. It's pretty horrible to see.

As this thread has demonstrated, there are many people that do support the change to have a profound autism diagnosis. I am not discussing many boxes just two either profound autism or autism.

The description of profound autism I have seen doesn't have "or" in the classification it is an "and". So no you wouldn't have a non verbal person with a Phd with the diagnosis.

https://pubmed.ncbi.nlm.nih.gov/38423722/

"Profound autism refers to a subset of individuals with autism spectrum disorder who have an intellectual disability with an intelligence quotient less than 50 and minimal-to-no language and require 24-hour supervision and assistance with activities of daily living. The general pediatrician will invariably work with autistic children across the spectrum and will likely encounter youth with profound autism. Awareness of profound autism as a real entity describing autistic children with concomitant intellectual disability and language impairment who require 24-hour care is the first step in developing a solid pediatric home for these youth."

Have you also heard of the Sandcastle Trust?

It wasn’t dismissed. It was not the same.

Not less important, or less valid, but not the same.

And I have no idea how you get the thoughts and feelings of a non-communicative person who doesn’t speak, sign or write.

You are welcome to try.

My point isn't that your child doesn't face difficulties. Nor do I know whether your child would be a profound or mild case in any new classification system. My DSD has a range of difficulties and needs that are not trivial and impact her life and relationships every day, and will continue to for the rest of her life. With the right support, though, she will be able to live independently, work, have relationships and tend to her own basic needs. My friend's adult child with profound autism can not make eye contact, speak, control his behaviour to any extent where he could be without supervision, respond consistently to questions, cook or clean himself and will need to have one-on-one supervision and total care for most of the day for the rest of his life. They do not have any commonality in what they are facing or in its presentation.

My point is not that people with 'mild' autism are unaffected/without need. It is that there is no clinical/physiological/neurological/biological evidence that the condition of autism, as originally classified (what is now called profound), has any meaningful similarity to the range of conditions that are now under the autism umbrella, including whatever is causing DSD's difficulties. There are some conditions - downs, cerebral palsy, cancer - that present in different, more/less severe ways, and we know they are the 'same' umbrella condition because of a range of physiological/biological markers that allow us to say 'these are the similarities, so it's clearly the same kind of thing'. This does not exist in autism, and so I'm baffled why people who don't have profound autism want to have the same diagnostic label as people with a completely different disability with completely different needs. It's not about 'one is better one is worse.' It is that without properly understanding these very different conditions, we are not meeting any autistic person's needs.

Agree. It needs urgent investigation. I predict it will be a new ‘thalidomide’ in 20/30 years (not in terms of being caused by medication necessarily, but I think we will discover some kind of environmental factor that massively increases the chances of it happening and it will be something fairly novel).

Who has a PHD and profound autism?

I assumed from what you said regarding “very high care needs and minimum executive functioning or understanding” that you meant the group of autistic people who have an intellectual disability too.

Uta Frith said recently, when discussing the increase in diagnoses, that
“in autistic children with intellectual disability, there has not been any real increase; that group seems quite stable”.

But maybe that was not the group you meant?

She did also say that diagnoses in the group who are typically diagnosed young (under 3 or 5, so probably non-verbal at that age, possible ID) are increasing only at a moderate rate. It is diagnoses of a ‘milder’ presentation that have exploded.

There are no official stats on how many 5 year olds (or whatever yardstick is chosen) are non verbal and diagnosed autistic. All I can go on is the absolute wealth of personal experience from others and my own eyes and ears. Just look at this website - barely a mention of non verbal autistic children until 2017/2018 at the earliest. An explosion of posts since then, almost daily. My youngest has attended 2 primaries and in both she has had at least 1 non verbal autistic classmate. My son is 3 and his nursery class alone has 2 children who are non verbal and have no understanding and are likely autistic (I know this as they bit DS and the staff explained that the usual talks about behaviour wouldn’t work as they wouldn’t understand it, and said they are seeking SEN funding for them).

This is also the experience of everyone around me.

I appreciate anecdata isn’t data, but it’s just so obvious and persistent that I can’t think of any other explanation for it. Every teacher and nursery worker I have spoken to reports the same thing.

This is astonishingly offensive.

Is it? There are communities of mums online appealing for such an investigation to take place. They’re desperate and are being hounded for being ‘ableist’ when what they want are answers as to why their children regressed, lost their language and developed gastric issues and self harm behaviours.

Are they astonishingly offensive for wanting those answers?

Can only speak from my own experience ,but all four special schools in my LA have more than doubled in capacity over the past 10 ,15 years due to the growing needs with children with signifiant and complex disabilties and autism.

Why?
I think many would welcome an explanation. I know my parents are desperate for one.

Are you intentionally misunderstanding? We can obviously get the views of people who would once come under your definition of profoundly autistic but who have learnt to communicate in some way. That's the group you're seeking to make a decision for without asking them. Their voice is extremely important in this. And we've seen that when they try to use it they're dismissed because obviously they were never really in your category of profound autism in the first place if they can get out of it.

She was dismissed. She was told her autism wasn't severe enough because she had found a way to communicate. She's been repeatedly told she can't possibly have had childhood experiences like your child, that's despite her saying that she didn/

I think really better post diagnostic support would be much better than splitting the diagnosis as I can see clinically how splitting a diagnosis where it's core elements (social communication and interaction, restricted and repetitive behaviours) could be challenging.

I have had fantastic post diagnostic support, multiple sensory profile screenings, occupational support, advocacy and liaison services, hospital passport, and also comorbid condition screening, as well as support out within the community, referrals to adult social care and a disabled adults needs assessment that led to support with housing.

I was a hyperlexic, hyper verbal child with excellent pattern recognition, struggled socially at school but excelled academically, could not assess risk and ended up in a string of abusive and manipulative relationships, unable to understand that wasn't what normal life was about, and an unable to care for myself adult due to sensory issues and selective mutism.

All of the post diagnostic support I was offered helped me untangle my life as a late diagnosed adult in a way that means I can identify my needs and areas of weakness.

My son, diagnosed at aged 3 just 1 year before myself, no eye contact, wouldn't respond to his name, non speaking, stripping his clothes off, flapping, screeching, shrieking, hitting, biting, having a meltdown when his things didn't line up or spin how they were supposed to received absolutely no post-diagnostic support within the same local authority, the only difference being he was assessed as a paediatric case, and therefore it was assumed his needs would be addressed within his educational setting and by an EHCNA with an EdPsych. Now I do know intimately what my son's needs are but relying on multiple agencies to also document and assess his needs causes a lot of crossed wires and actually creates barriers to him accessing support whereas by having one singular team, and in fact a pretty consistent single point of contact for me in contrast has opened a lot of doors to a lot of support in the same time it's taken to get to the point of appeal for my son's EHCP who's needs are much more significant than my own.

There's an inequality in the provision of care and where the responsibility for identifying need is placed.

I've seen families with profoundly autistic children crumble from the lack of support that other families in other locales receive and didn't have to fight quite so hard for and who's needs may not be quite so significant or limiting and it does create an us and them atmosphere, like someone is getting more for less, when it's a distinct lack of support from the local authority and agencies that has caused it.

I don't think profound autism is the same as autism with spikey developmental profiles or persistently above average developmental profiles but without more research into the mechanisms behind the causes, I don't think it's likely that the diagnosis will be separated, and there are many lobby groups against research for this due to lots of reasons, one being eugenics, the other being data collection and security and what other research will be conducted from the data collected as well as who specifically is financing the research having a bias or vested interest (look across the pond to RFK Jr.).