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 One of the reasons given is that their autism would be seen as "mild autism" and support maybe withdrawn.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

One of the reasons that the two diagnoses (Asperger’s and autism) were put together was because that with the emergence of a number of early interventions for autism some children with profound autism/Kanner style autism have become verbal and have reached a point where they no longer fit the diagnostic criteria for autism.

however, as one of the books on this issue says - the hope was that these interventions would enable people with profound autism to communicate and interact better in the world, and the interventions achieved this. What they also showed was that the autistic mind once able to communicate is not similar to the NT mind.

so these children who become teens who can communicate still have differences and issues that mean that they need support but they fit now more into the Asperger’s diagnostic category than the profound/Kanner autism category.

so the people who organise the categories noted that these categories seem to be basically the same thing.

i taught in a unit for children with disabilities (primarily autism) for many years. I did see teens who at age 6,7,8 were non verbal and smeared faeces then be able to cope with at least partial mainstreaming at 14 and 15. Not many of them but they were there. They were still autistic even though they had speech and were now toilet trained and didn’t smear.

the interventions and early support for profound/Kanner style autism mean that many children in this category now do develop the ability to communicate and are able to make progress. Not all of them obviously.

that’s why the two diagnoses were collapsed into one. Any attempt to separate them again will need to find a diagnosis for this new group.

Surely the diagnoses changes then? People's diagnoses change all of the time. It doesn't mean you should not diagnose someone because it might change in the future. It is a good point that you have made though, but I have heard this with my own son in order to hold back support.

With all due respect but back the hell off. You are not the autism guru. You have absolutely no goddam right to make assumptions on me or my son based on a couple of random thoughts I have written on a website at 8am. I have bent over backwards to get my son the diagnosis and LABEL he needed to create the shared language we needed for the school to listen to my concerns. I continue to be my son’s biggest advocate and I worry daily what the future looks like for him.

I can guarantee I have done a shit ton more research than half the parents out there with autistic children because that is my personality type. But I do not have to agree with you that his diagnosis relates to my friend’s son diagnosis, a boy who is in a special school because at 15 because he still can’t talk and he is dangerous on his own. He will need care for the rest of his life. I think bundling all autistic children together is harmful, and it’s getting those of us with lower needs children dismissed because of the lack of nuance between the diagnoses.

I am not stupid. I am not dismissive. I am pissed off at other people like you telling me what I should and shouldn’t think.

I agree with you.
As a mum to 2 autistic kids and everyone says they're completely different ends of the spectrum.

One is non verbal, almost 7 and working towards early years, still in nappies, still needs to be fed, sensory processing disorder, uses a wheelchair as absolutely can not walk not physically but outside of home or school due to sensory issues clearly has a learning disability but cant be assessed for one until hes able to complete the assessment..... does thay not say enough? Attends an independent sen school. Can't do anything an almost 7 year old should do but is diagnosed autistic.

My eldest is the opposite to him also diagnosed autistic. On paper theyre the same but in reality they are not even close and it's hard. People dont assume my eldest woukd have the struggles my youngest does but are surprised at the struggles my youngest has because hes autistic and his brother isnt like that and neither are lots of other autistic people. In our area there isnt a level of diagnosis either its just autistic here.

I think this is too mych of a sweeping statement and isn't universally true. My child does get a lot of support but we have fought for it continually for well over a decade (he was diagnosed very young and we've been fighting since). I do know of many families with severe kids that aren't getting anywhere need the right level of support. This is shown by the increase in kids who are severe being in mainstream.

I also know of families where their child is high functioning and because they can understand the SENd system and have the means, their child recieves a hell of a lot of support.

I think adulthood is where this changes. Once a person leaves education there is more of a difference as it becomes harder but again money and ability to advocate makes a massive difference. It also depends on how you view support? Some people end up heavily medicated and essentially held in a hospital long term, I wouldn't class that as supported. This is less likely to happen so someone with capacity who can advocate.

I will read this later, thank you. I'm just tryingto read the posts I've missed while asleep atm.

Why did you fight so hard to get him a diagnosis you don't think he has?

People with profound autism are very unlikely to do those things.

Individuals don't just get the same amount of autism or have autism impact their life in the same way. Some people are impacted severly constantly. Seperating LD from thatvis difficult because it is unclear where the LD starts and the autism begins or if one makes the other more profound, how do you that the person doesn't have LD but is just so impacted that that is how they come across? It's all part and parcel of the same thing.

I think you need to read the pp posts agsin she does beleive her son is autistic
But her son doesnt beleive his autism disables him ,he is allowed to feel that way
She also doesnt beleive her son is disabled in the same way her friends high needs child is
Autism impacts people in many different ways .

It’s not offensive to say that a teenager who smears their faeces and has the ability of a 24 month old is not going to be able to go to mainstream school if only they’re taught some sign language. It’s a fact.

It was insulting of the poster to suggest otherwise to the parents of profoundly autistic children and young people who have shared their experiences on this thread.

I think one of the issues is the movement for profound autism seems to include a low IQ in their criteria.

I dont really fully understand why that isnt just autism with learning disabilities as I assume that there are obvious differences around restricted/repetitive behaviors and comms between people who have autism with learning disability and people who just have learning disability that can be seen.

But my main query is quite a few people say autism is their childs ony diagnosis and they either couldnt be measured on iq or had a spiky profile that put their iq above the thresholds proposed, but you would still describe them as profound in that they have life long 24/7 care needs and i do wonder what happens to this group. It feels to me more important if you 24/7 care is based on the core deficits not iq, that iq doesnt form part of the criteria otherwise this group is going to be excluded.

Creating new categories is always going to leave people out. I thought this was interesting. The Lancet proposal for profound autism was this:

"This category describes autistic people who have little or no language (spoken, written, signed or via a communication device), who have an IQ of less than 50, and who require 24-hour supervision and support."

And a study found:

"About 24% of autistic children in our study met, or were at risk of meeting, the criteria for profound autism. This is similar to the proportion of children internationally.
Almost half (49.6%) showed behaviours that were a safety risk, such as trying to run away from carers, compared with one-third (31.2%) of other autistic children.

These challenges weren’t limited to children who met criteria for profound autism. About one in five autistic children (22.5%) engaged in self-injury and more than one-third (38.2%) showed aggression toward others.

So, while the category identified many children with very high needs, other children who didn’t meet these criteria also had significant needs.
Importantly, we found the definition of “profound autism” doesn’t always line up with the official diagnostic levels which determine the level of support and national disability insurance scheme funding children receive.

In our study, 8% of children at risk of profound autism were classified as level 2, rather than level 3 (the highest level of support). Meanwhile, 17% of children classified as level 3 did not meet criteria for profound autism."

Entirely agree with you.
I have three children, all suspected ASD (noted by teachers/health visitors) - socially awkward, difficulty with emotional regulation, different methods of teaching needed for different understanding. The youngest has a speech delay. But otherwise they're very able and other than needing extra time and understanding, they should go through life with little to no trouble.

My cousin has three children. All diagnosed ASD. They're non-verbal, chew through her walls, have violent outbursts and smear. They will need special education, carers and lifetime support.

It's a spectrum, yes, but my children won't face half the difficulties of my cousins children and it doesn't help anyone to slap them with the same label.

My sons IQ cant be measured ,he.wouldnt tolerate any.testing ,he goes to a school for children with severe and profound learning disabillites
So there is an assumption he has severe learning disabilllties but really who knows ,maybe its just the fact his autism is so profound ,either way it doesnt matter
But his autism and learning disabilities are intrinsic to each other and its impossible to say where on starts and the other ends.

Your children don’t have autism diagnoses and much of what you have said including “they should go through life with little to no trouble”illustrates they’re unlikely to get one as difficulties need to have significant impact on life to reach diagnoses threadhold..

Completely agree.
I have two brothers with diagnosed autism.
One lives in a home, is non-verbal etc.
The other is at university, has friends, a girlfriend and is studying for a degree in Aeronautical engineering.

It’s such a tricky area. I do agree with you that there should be levels. But I suspect that would mean some people changed levels throughout their life. I was interested in the poster who said she had worked with children who started special school with profound needs and by 14-15 they were in mainstream with support.

Our journey, like many other girls, is in the other direction. But DD’s presentation is different to an Asperger’s-style of autism. I suspect that would have been her diagnosis at 8. But soon after that she started hitting herself under pressure and her profile has gently tracked downwards from there.

I would say that while I can understand your cynicism about people who have more symptoms some days than others, this is our experience too. Happy, and with few external stressors, DD is cheerful and extremely quirky, talking at length about her special interests. Under high pressure, she’s mute or squeaking, hurting herself in the corner of the room. Despite this she is not mentally unwell - it is autism, not stress. She is at online school and managing there with day-to-day support from me (I have lost my much-loved career). No help from the local authority - another tribunal next year.

I do think of all the reasons to abandon the Aspergers diagnosis, Hans Aspergers’ nazism is the least compelling. Just call it something else. Thunberg syndrome, if you like. If a building is named after a bad person, you rename it, you don’t knock it down. But if the diagnosis is resplit there does need to be a place for someone like DD who is verbal and whose learning is impeded but not to the extent of education being impossible, but who is unlikely to be able to hold down a job and who is vulnerable. But then where do you draw the line?

I understand that.

But the movement for profound is suggesting that low iq is part of the criteria. I think they will exclude people like your son if thats the case unless they just assume everyone who cant be tested meets the criteria?

I feel like the iq is a red hearing really. If the chikd/adult needs high level 24/7 care arising from the core deficits of autusm, i cant see it matters if they have great shape recognition that they cant do anything with.

Over diagnosed based on what evidence?

I do agree that this level or cohort of people are less understood in terms of their condition and there is an almost constant narrative in some people's lives as to whether it is ' mental health' with the current thinking being ' no it's autism.'.

I have 2 children who have an ASD diagnosis, if they did bring in the profound diagnosis one would get that diagnosis, one would not, my son is non verbal, very clearly ND, sensory issues, toileting issues, learning difficulty, cognitive delays, my daughter from just talking to her would appear NT, but behind the scenes she has high anxiety, episodes of depression, sensory issues and struggles to understand social cues and in part the world around her- money, jobs, time.
while i do support the profound diagnosis, i think it will help to distinguish the needs my son has more appropriately as now when i say ASD i don’t think it is grasped how many issues he has- as so many kids have a diagnosis now, it won’t do any good as far as support goes, as he has no understanding that he has these struggles or differences, my daughter however does understand and it is this that causes the distress, upset and frustration, while on the one hand my son will need care for the rest of his life but my daughter is the one that needs the most support and is actually the harder to deal with- my son is generally happy and care free and doesn’t give a hoot about how the world sees him.

I hope you don't mind joining in in this conversation.

I see the IQ in the profound autism as a marker or signal that the person whether because of autism or LD lacks a certain level of understanding all the time, not fluctuating as some people experience. I'd imagine that where LD can't be measured due to the person not being able to engage in a the test regardless of envuronment or situation; their understanding being the barrier not the environment or other stresser. That this would meet the LD criteria as a dr could make the diagnosis based on how the person presents and how they cope with day to day activities. This is what happened to my ds.

They may not. But the professionals referring them are concerned enough to think they might.
My son spends his time obsessing over things (the thing can last weeks/months or years), pacing back and forth while shouting about his interests (at me, not to me) and making no eye contact. He needs to be reminded to brush his teeth, shower, literally handed the items. He was very delayed in his toilet training, would cover his ears and cry in overstimulating spaces (doesn't cry any more but now runs away from the situations) and needed ELSA intervention in primary school. He's also received extra support at high school level for "additional learning needs" despite being in the top set for all subjects - because he processes information differently.
My middle child is already receiving extra support at school, despite being very bright, excellent at puzzles and maths. They just don't absorb information the same way as most of their peers. They weren't toilet trained until after they were in school (despite starting at appropriate age, using all available tools etc). They've displayed a lack of empathy and there have been enough concerns from me to seek help from a psychotherapist who suggested that it might be ASD. This was doubled down on by their teacher. They also have an extremely limited diet.
My youngest child can't speak. They're engaging in most other ways. They spend their days doing the same things over and over again. They flaps their hands. They spin in circles. They screams for no reason.

There's a bit more context for you, not that I owed it to you.

Just to add, he had a full cognitive profile for an appeal to sendist. His IQ was measured in the 30's but the EP/ CP thought it wasn't a true result. The Paed had to diagnose based on MDT input. Just thought it best to give more info on that.