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 One of the reasons given is that their autism would be seen as "mild autism" and support maybe withdrawn.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

Being able to communicate and being able to do everything for themselves is two very different things. A child could be extremely high care needs but can point to a picture of a drink to communicate they want it, they could also be doubly incontinent, have no awareness of danger, self harm, be in a state of constant distress etc of course they need more support than someone who can do everything for themselves.

Many people aren't getting enough support now. I highly doubt that support won't be further removed any chance they get.

My child doesn't get anywhere near enough support. Parents of children with the most complex needs have said they aren't getting adequate support either.

My child doesn't need the support complex needs would need but they don't get the support they do need.

So no one is winning well apart from the government who are managing to cause everyone for focus their energy fighting each other

My son is 38, still lives at home with me. 28 nights a year respite.
Doubly incontinent but a happy Bloke who makes me laugh more often than he makes me cry.
I know everything there is to know.
Gordon Brown had a plan just before the bankers crash in 2008. Then we had austerity.
I am used to hanging on by my fingernails.
I've despaired for years 😂

Yes it's just not good enough and too many families are left hanging by a thread.

I hear you my son is 16.next month with similar needs to your son i love him to bits
I want to care for him as long as possible
And he does make me laugh every day .

That is completely untrue and vile to boot.

Nobody gets anything unless there is dire need and even then when dire need isn’t hugely visible it often isn’t there.

Needs differ and those that don’t have a learning disability in addition to autism are more likely to be those left with nothing and support they do get is from completely different areas of funding.

Posts like this are designed to attack an extremely vulnerable group of society which is being hugely let down across the board. Dispicable.

Oh the ignorance!!! You have zero idea what you’re talking about. The idea that a bit of therapy and medication from CAMHS can get rid of dire need in autism for those that don’t have a disability too!!!

Its laughable. Autism is for life. There is next to nothing from CAMHS for anybody and autistic kids who have higher need are the ones more likely left to rot and have the difficulties from the autism they were born with exacerbated. Treatment that any do get is harder to access because of said autism (which makes everything a gazzilion times more complicated )and widespread ignorance.

Children like this have to access the world and are more likely to be abused, bullied, become victims of serious crimes and be discriminated against on top of not receiving the care and support they need.

Nothing makes autism go away and those where autism is less visible receive the least,ensuring such children become even more vulnerable and turn into struggling adults whose autism impacts even more which means they need even more care and support that isn’t there for both them and struggling families. This in turn puts added pressure on services for everybody and the same group then gets attacked and picked apart by ignorant posters online for the minuscule morsels they do get. Often this attacking comes from those that are receiving the biggest packages and help who on top of spreading lies about care needs and funding try to discredit their autism difficulties too.

Its despicable.

The OP is not ignorant or despicable.

I think that part of the issue is that ASD has been broadened to include other things that have similarities to ASD but might not be ASD.

However as there is no other way to defined them that the public can understand they get shoehorned into that category. This is where my son sits and frankly the question of profound or not profound ASD is irrelevant as his presentation is that of someone who might have had Asperger’s had he not been struck with CMV whilst in uterine or immediately post uterine,

We had a VEP showing latency and white matter damage.

So in essence kids with severe language impairment / motor coordination etc and most likely viral caused brain damage is now classed as ASD. Where is our own diagnosis?

People with profound autistic kids might say ‘ he communicates and has intellect so he is not as high needs as my child’ To a degree that is true.However due to whatever crap happened in his brain, when he is on a dysregulated rant, his PA has his hands full, At that point, he might be higher needs than someone with profound ASD.
So an inexperienced PA might struggle ( this has happened)

Also he might be able to communicate but when your understanding of people’s intentions is on the 0.75 percentile you become very paranoid and in essence can to function in society. You are too scared to do money transactions easily.

His motor coordination stops him prepping food for himself successfully, however he thinks that he can so he is likely to chop his fingers off. When you watch you kid heap sun-dried tomatoes dripping g with oil into a sandwich bag into the toaster or try to chop a bread roll held in his hands with the knife going perilously close to his wrist you feel quite frazzled. You might think great that he tried to cook whereas I just wish that he would not. The last incident he cut his finger, was completely irrational with a plaster and had several people swannjg around him to try to stop the blood flow.

The whole walking around talking to himself and literally almost arguing with himself and then putting himself into a mood where he decides to bang things is really really stressful. Worse he can lack sense of day and night so we get that sometimes at 4am.

So by all means carve out profound autism but equally I would ask that complex needs from birth should be carved out as well, in fact,

I think that people with this cornucopia of needs should have their own diagnosis and recognition. I think it’s crazy that it’s lumped under the ASD diagnosis because no one has given it a name.

All I know is that he could not swallow / had hypotonia had birth and prolonged fits for years that lasted long times eg one lasted over an hour and eh was still fitting in hospital

Where is his specific diagnosis and why are we lumped in as ASD which mentions none of that.

I do not stand alone I was told that there are many kids who have this Venn diagram of symptoms but the DSM has not got around to sorting out a label yet alone classifying the causes eg for instance viral assault in uterine

Yet where we are. ASD is a convenient label to explain part of his issues but not all of them. How many other people who can ‘mask’ had hypotonia, fits and white matter damage?

The issue is that medicine is letting us down.

So the point is that I also feel that my son is homeless with the ASD diagnosis and in fact much prefer to look at all the aspects of his issues with each part of his profile diagnosed.

I cant relate to people who talk about masking until adulthood and having break downs. It all seems horrible for them but not remotely relatable to my son’s issues.

I wish he could mask. I wish he would not talk to himself /ranting in front of strangers.

He has huge insight into his issues as well - it’s like early stage dementia with the stress that it causes having that insight where he bang his head and wishes he was dead.
His whole mood is so down at times and he has huge low self esteem. I would say that he is profoundly unhappy 70% of the time.

I don’t understand why we have been left with no specific category for who he is and here we are housed in an ASD format.

Clearly there are huge overlaps - a semantic / pragmatic score of 0.75 is pretty bad so deficits in communication tick. He stimmed a lot so tick and is obsessive on subjects ( currently the Abyssinian Empire and when young Titanic )

Bur it’s all the other stuff not covered eg the prolonged fits when young . the motor stuff, the hypotonia , the odd sleeping ( he is being tested now for epilepsy / narcolepsy) the inevitable asthma/ eczema that seems to go hand in hand with some ASD and not others. He even had cellulitis when about aged 2.

There is a real physicality to some ASD with eg hypotonia that inevitably causes the SPD and was reflecting in the lack of ability to swallow. This is not something that can be masked. Either you swallow or you don’t as a child

How many kids with ASD had significant glue ear and hearing loss - you can’t mask that as a child. My son had profound hearing loss and this clearly could cause ASD like symptoms. He had no hearing or little input for 5 years whilst his brain was developing ( on 80 to 50 decibels) Can you imagine having no language input or little language input for 5 years, He could not have hearing aids fitted due to the variability.Im sure that helped cause ASD symptoms.

So he’s my son is bunched in a category that really does not suit his journey.

If you mean I said they never change, this is taken out of context. The never change as in the needs are severe all the time, the severity of need doesn't change. Level 3 every day.

It would be interesting to know how many people, with ASD had the other issues

How many have associated asthma eczema
How many had glue ear and significant hearing loss
How many had poor motor skills / motor coordination disorder / hypotonia
How many had significant delayed expressive / receptive language acquisition
How many had prolonged fits eg longer than 20 minutes
How many had bowel disorder / were treated on movicol etc
How many had microencephsly ( my son was on the 9th centile )

I think that all those who had minimum 2/3 of the above should be identified and put into a separate category.

This is a category where they had a clear physical manifestation in childhood of something being amiss.

My sons consultant told me that they were well aware of this category and were trying to create a differential nake for it - but here we are over a decade later and no progress.

Is it cause or effect? Did the lack of hearing partly cause the ASD manifestations. Likewise did the lack of reliable messages to the brain due to hypotonia cause the ASD manifestations? Where is the research on this and hopefully one day something to stop it happening?

I think that for this we should have our own category and more research should be done. So yet let’s hive out ASD because at present the category provides a useful shorthand but does a disservice to some.

Ok, so I don't know if my son will decide to try to jump dowm stairs, walk down stairs or trip down the stairs and he may or may not hold on to bannister. That is as well as possibly flapping or stimming another way while walking down the stairs.

He may decide to play with theraputty, eat it, stick it to the wall or stick it to something or someone else. Same with food. Depends on his mood and what he is thinking but I can only guess at what he is thinking. He may do all of those. Who knows? If he is eating, he can't prepare food, we give him meals at regular times and offer food throughout the day. All on a visual timetable ofcourse with a plastic plate used as an object of reference. He can't clean up the plates after, he doesn't really use cuttlery although we do have caring cuttlery (specially designed to help position the hands).

He needs help to get dressed and undressed but if he really wants to get undressed because he likes to not wear clothes, he manages it lke magic.

These are a few examples of basic things that people generally do everyday. Having severe support needs doesn't mean you know exactly how the person will need support but you do know the person needs support in one way or another.

Ds has to have someone with him while awake for his safety because he doesn't understand how to keep himsef safe. This is actually really difficult to do as everyone has to goto the bathroom at least and no we're not given that support by the LA. My husband works so school holidays are managed as best as we can. Honestly, if they had a category in the olympics for fastest wee, i'd be a gold medalist.

For Gods sake read the post I was replying to

It took us 3 referrals for CAMHS to see DD. Her main issue is phobia of vomiting which I think can be quite common among autistic females?

Listening to her reel off all her worries and routines/rituals so bad stuff doesn’t happen was horribly upsetting not more or less so than my other DC who has problems.

No matter your DC needs are you just want to take them away for them. I almost feel like some in the SEN space make it in to a sick competition of who has the worst experience.

I find DD3 the most difficult when it comes to communication as she has no words but also does not gesture/point/lead so it’s just a huge guessing game.

she currently has bruises on her little arms from biting herself when extremely distressed.

there is definitely varying degrees of autism and struggles but then I guess that’s why they called it a spectrum to begin with?

a big issue is people can’t seem to grasp that, if they meet someone with autism who is articulate and manages well but a little introverted they then seem to think every other autistic is capable of that. It is extremely ignorant.

Im interested in this too. There are so many known comorbitities with autism and autism is already an umbrella diagnosis, it doesnt address the cause of the core deficits.

My son has nut allergies, a specific unusual eye condition, aneamia, and hypermobiity and bowel issues. His autism presented a little unusually (mainly a big mismatch between productive and receptive speech) , and then we met a girl who had the exact same comorbitities and presented the exact same. She'd had genetic testing and had a micro deletion. I always wanted to know if my son had the same deletion but we couldn't afford testing.

I think there needs to be miles more testing and corrolating of the data, symptoms etc of autistic people. I'd love for genetic changes to be a standard and brain scans. It's part of the reason I'd like profound aurism to be brought in as a diagnosis, it would already group some people together. Not only would it make research for this group easier because they've already been grouped, it would mean research can be targeted and they would be included better in research.

I think it's many different conditions all lumped in together. We may start to get more answers by having some grouping.

I feel that we are being let down by the NHS

There is a new enquiry into ASD and I shall write to the authors as frankly it’s crazy that everyone is held in this bizarre umbrella group. That is what a diagnosis of ASD has become.

Also the signs and symptoms my son had were literally from birth - his legs looked like frog legs and I called the doctor over in the maternity ward.
Thereafter he could not swallow, this discovered within weeks - it lasted over 2 years.

So some of our kids were showing abnormalities as babies and as toddlers. Some od these abnormalities were on the extreme level.

This is clearly a different type of ASD from some one who felt different / socially isolated at school/ masked and then had a breakdown. All in rid own way horrific I am sure but that person would not identify with my son.

Amongst other things the physical trauma of frequently falling when younger / bumping jnto things/ not being able to touch your nose ( no idea where it was until aged 11) whilst pretty much not hearing and not being able to talk etc mentally would have a profound ongoing lasting impact on you. The social isolation was extreme and my son was literally imprisoned in a non hearing - ‘no idea where his body was in relation to things’ world and also thumped my another kid at school

The depth of this trauma is completely different the trauma of masking and feeling socially isolated. He sat in his own poo for a whole day as the Pa never noticed allegedly. This happened repeatedly when he was aged 9 and 10. ( bowel overflow)

It’s like they are completely different beasts and come from a complete different background..

Surely if we want answers this makes sense.

I want to know why - I am guessing as they flagged the CMV virus in his bloods post partum.

But equally my dad was really successful and clearly had Asperger’s ( no mates / no empathy)

i want to know can we stop this - for god sake will my daughter want to have children?

Where we live camhs are rumoured to only be seeing yp who have tried to take their own lives. I say rumoured because it hasn't been confirmed by camhs directly. They are very underfunded and oversubscribed, i think this a national problem. It's a disgrace not just for autistic yp but for any yp that needs help.

When i put my post up earlier, it wasn't to upset you or insult. It was general musing at how parents view the difficulties of their children. Ultimately this is a parent site and the majority of us are discussing our children.

My ds used to bite his hands and arms when he was distressed, i know that can be heartbreaking 💐

And your kid has clearly really high needs - what is the issue in recognition?

I know my son is classed as middle - as things stand he can’t live independently at aged 22

I am hoping we can push him into being able to live with Pa support on his own and not supported living. Frankly j don’t want him not working but he was turned down even from voluntary work!

When it gets to adulthood that is what is boils down to

1 Intense care - full time 24 hours
2 Significant care - several hours per day
3 Two to three visits of care a day
4 One visit a day care
5 Someone to check in periodically
6 Regular meet ups / sign posting to support groups / mental health support

or

varying needs eg between say 1 and 6

Assuming you are in the UK
Could you not ask for a microarray blood test on the NHS
It picked up.my sons microdeletion
And many deletions/ duplication,s csn present in similar ways although they are also a very broad spectrum

I think this is unfair and completely ignores the reality of our situation as a country.

We are now in a situation where we have almost unlimited demand for support and resources from a rapidly expanding group of people. We also have very limited funding available to meet these needs. We have an enormous national debt and crippling interest repayments already. There is very little point in hand wringing and complaining that everyone isn't getting their needs met. It's obvious that this is the case and will continue to be the case unless we find a magic money tree somewhere. So what viable approaches do we have:

1. You spread the funding we do have available thinly but amongst all those with additional needs.

1. You concentrate funds on those with the most severe needs and raise the threshold for support.

Someone advocating the second option isn't despicable. There are clearly winners and losers in both approaches. What is despicable is trying to shut down debate and accepting only those that suggest that everyone's needs should be met and anything less than that is morally reprehensible. This is completely unrealistic and just support us drifting into a position where we don't have a clear and viable plan but muddle on pretending we can do something we obviously can't.

we were told re my son by CAmHS that there has to be an active attempt at taking your own life or a detailed plan

we were left in the position that my son expressed a desire to many members of staff and the director at CAMHs said that we still had to be on alert due to the intensity of his vocalisation. He also head banged / self harmed ( all witnessed) However as he had not made an actual attempt and not expressed a detailed plan they could not take him on - he also turned 18 with the wait. We were left relying on knowing we could call crisis team.

I have given up on the NHS and we use his pip to pay for counselling / a PT trainer for fitness and drama lessons to keep him engaged / in society other than his PA.

It’s extremely unsettling dealing with someone talking as he does. My bother was a green beret and even he was stressed once as he thought he might jump into the Thames - he moved to bloc and said ‘ don’t you think you shld be a bit more careful’

The ranting and head banging is all seen as part of ASD

Yes. And there are specific hereditary genes associated with autism which are also highly correlated with high IQs.

There are other people with random genetic mutations that aren’t inherited that cause developmental delays etc and some crossover with autistic presentations who are often misdiagnosed with autism when what they have is a very rare genetic condition.

There are others who have the genes connected to autism so are autistic BUT also have additional learning disabilities or other conditions causing low IQs, cognitive deficiencies and limited brain functioning in parts of brain function that are not removed by autism itself e.g. total lack of self-awareness, inability to process information at all or communicate at all via any method etc (none of which are caused by autism).

These people do not have a more “severe” version or autism or “profound autism” because the genes that cause their autism are exactly the same hereditory genes (many of which are already identified) that cause autism for those without these additional conditions or cognitive impairments on top of autism. These people are more profoundly disabled because they have other conditions as well as their autism (whether diagnosed or not) which are causing them additional difficulties, and like with many health conditions when you combine two or more together they may negatively interact and make each other worse.

In summary:

1. The parents of children who are profoundly disabled and have been diagnosed as autistic are correct that they have higher care needs than children who only have autism;

2. some of these profoundly disabled children will be autistic, some will have been misdiagnosed and actually have very rare genetic disorders. Actual autism is hereditory;

3. some of these profoundly disabled children are actually autistic but the thing that makes the profoundly disabled (i.e. low IQs and other presentations such as no awareness of their surroundings or self, no cognitive ability to ever learn any kind of communication method at any point in life, etc) is not the autism, but their other conditions (which may not have been diagnosed as doctors sometimes just lump this under autism when there is no evidence that the genes that cause autism cause these issues on their own, in fact it is well established that they do not);

4. there needs to be more research into the reasons why there is the opposite of a normal distribution of IQs in autistic people (an inverted bell curve), which research to date is the result of these co-morbid conditions, and what causes them in higher prevalence in autistic people than the general population;

5. people need to stop conflating the impact of these separate conditions such as LDs when in combination with autism with autism itself. These children are more profoundly disabled than people who only have autism but they are not “more autistic” or “more profoundly autistic”;

6. It is disgusting to read neurotypical adults insulting and lecturing autistic adults about the impact of autism when they have never experienced it. How much someone’s autism affects them is not determined by how much it is visible or obvious to or affects those around them, including their parents. The level or care need and the “severity” of the autism are NOT the same thing. These parents - while understandably frustrated with poor services - need to stop targeting autistic adults from whom they could learn a lot about how the autism aspect of their children’s conditions is actually experienced by autistic people, which might give them some more insight into their children’s internal world which due to their children’s other conditions they cannot communicate to their parents. It’s always bizarre to see that for only this particular medical condition there are certain people who do not have it and yet feel entitled to tell other people who do have it how it affects you (note: obviously autistic posters here without LD or the other conditions which in combination with autism are causing these children to be profoundly disabled, have not been commenting on how it is to live with autism AND these other conditions that these profoundly disabled children have, but can provide much insight into what it is like to live with the effects of the autism itself, which these neurotypical parents obviously have never experienced and clearly struggle to understand in many cases given their horrendous and insulting responses to many autistic posters on the thread);

7. clearly there needs to be clear diagnosis of the specific conditions but these attacks on autistic adults without impaired IQs or LDs are entirely counterproductive. It is good that at least some autistic people can speak up and communicate for the community as a whole. Nobody, as far as I have seen, has denied that those who have autism and other conditions and are therefore profoundly disabled in every sene should have less support; quite the opposite;

8. this will not be solved by falsely trying to re-define autism against all scientific research on the matter an split it into false categories with arbitrary lines drawn between them. The vast majority of people recommending such an approach are not autistic, which is very illuminating as it shows that those who understand how it is to experience almost unanimously recognise that this is nonsensical and cannot ever be meaningful or workable. Similarly, there are certain very vocal “psychologists” who recommend such an approach but actual neuroscientists and geneticists who have spent a lifetime researching this almost unanimously disagree with this silly approach because there is no scientific basis for it. Genetic research and brain scans show that those who do have autism have similar brain structures and genes which are different to neurotypical people. Just because the NHS doesn’t diagnose in this way because it would be far more expensive doesn’t change the scientific fact that these presentations have the same underlying cause of the autism part of the presentation, it just indicates that those who also have low IQs and other difficulties which are NOT part of the autism diagnostic criteria or caused by the brain structures differences and genes shared by all autistic people either a) have another conditions entirely that is not autism per point 2); or b) that the additional difficulties these profoundly disabled people are suffering from are caused by them having other conditions as well as autism: these other difficulties are being wrongly attributed to their autism when the cause is their other conditions and time would be better spent identifying what those are and trying to develop treatments for them rather than denying that autistic people without these other conditions have autism;

9. PPs are right that there’s far too little support for profoundly disabled people. There is also far too little support for those who are autistic without other co-morbid conditions (basically none at all in most cases!) and multiple studies have shown the immense damage that masking does to mental health and life expectancy on top of the trauma of living with autism, so I think it is actually extremely unpleasant for parents of profoundly disabled children to use this as an excuse to attack autistic people without additional conditions causing LDs, low IQs etc that have nothing to do with autism and try to minimise struggles with sensory issues an communication etc which they will never experience themselves. Speaking to sufferers of any other lifelong health condition in this manner and lecturing them about how “profound” or “severe” you think it is based on how well they hide their pain from you would never be accepted with any other health condition and is shameful;

10. as evidenced on this thread, on average (debunking the myths about this) academic research has shown autistic people on average have more empathy than neurotypical people. They are also trying to speak up for your profoundly disabled children who suffer autism and other conditions, because although they do not know what your children live through with the other conditions they DO understand how it feels to be autistic and there is NO scientific reason or evidence to suggest that the autism aspect of your profoundly disabled children’s experience is any different to that of autistic people without the other disabilities are well, although it’ll clearly be processed differently due to different levels of cognitive function. Sensory issues, etc, will be experienced similarly. Rather than attacking other autistic people for not having other disabilities and trying to imply that their autism is somehow less disabling than for your children, it would be better to stand together for better services for everyone;

11. please stop starting these extremely unpleasant and goady threads. It neither helps your children nor any other autistic person.

ETA: @BlueCh1ckwhere I have written “you” in this post it is obviously not aimed at you personally as I agree with pretty much everything you’ve written on the thread! Just wanted to avoid any misunderstanding on that. 🫣 I mean the general “you” as in the many posters on the thread who have made appalling comments about autism, many of whom you have tried to counter.