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 One of the reasons given is that their autism would be seen as "mild autism" and support maybe withdrawn.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

Having both children one ' severe' and one diagnosed at 14. They have different challenges. My severe child seems a lot happier than my other.
I prefer Autism with severe learning difficulties as that shows how hard it is and how to care for them.
I certainly don't want to go backwards. I feel like my own life has been explained and I would be burned out at 45 myself if I had had support and understanding.

I should say I'm not a massive fan of self-diagnosis and I think the diagnostic net is being cast too wide and capturing other forms of developmental delay.

My post isn't a judgement on parenting, I am sorry you've seen it that way. I do understand how small people can make you feel, I've felt it, that isn't my intention. I didn't mention anything about parenting in my post.

I agree with you, as does my close friend who is the mum of a profoundly autistic boy. There was a long running thread on this about a month ago. You'll find lots of people agreed with you.

I do refer to my son as profoundly autistic.

In our area there are lots of resources and initiatives - very few of which cater for his level of need.

SENd sessions involve crafts, or mindfulness, or collaborative play. None of which he can access.

There’s a setting nearby specifically set up for children with autism, it’s even in their name. Last time we went he was asked to leave, as his loud stimming was disturbing the other children. A non-inclusive autism setting.

We have access to a SENd holiday club for 3hrs twice a week over the holidays. It’s an hour away, because that’s the closest can meet his need.

We sometimes joke that he’s too autistic for autism groups. But in reality, I think a lot of those environments are just set up now for children with a different presentation and profile, because I think it’s easier to provision for, doesn’t cost as much in staffing, and maybe it’s where “the money” is.

That’s not to say they don’t struggle with “their” autism, because difficulty isn’t a competition and I’m sure they do.

But there is genuinely nothing around here for children like mine who can’t sit at an arts and crafts table, won’t play in a tuff tray, and have very little independent play skills.

The only bit of your definition of profound autism I do not meet is the low iq part. The rest- extremely limited communication and require constant life long care etc due to their autism- still apply to me.

this too
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.

the only part that doesn’t apply to me was diagnosed later in life. Oh and I gave up on work age 39 as it was clear I was incapable and ended up on disability benefits after being assessed as too disable for ANY job inexistence.

so why is my autism mild?

I cannot tell you the constant grinding down of failed communications of mistreatment by others i hoped would become friends or even decent doctors.

i dont think you have thought this through,

No but you don't usually get people self diagnosing with cancer (it isn't acceptable to society in the same way self diagnosing autism is) or saying that they have some level 4 days and some level 1 days.

YANBU.

Can somebody explain to me how (for example) Greta Thunberg definitely has the same thing as a nonverbal 8 year old who smears faeces and spends most of the day distressed and unable to carry out basic self care tasks?

Everyone who gets an autism diagnosis has significant difficulties in daily life to some extent, (I'm Autistic) my child is (Autistic).
The difficulties differ between individuals. Anyone who met me walking down the street, taking my children to school, shopping ect wouldn't think shes Autistic from the outside.
I looked into this once and its reported that many profound Autistics also have other diagnosis as well, such as global development delay, speak and language difficulties, learning difficulties to name a few.
However Autisum it self doesn't mean low intelligence, learning difficulties etc its a social/comuacation disorder. So my take is although life in many ways is more challenging for me, I have found ways to access support for myself, work arounds, what a lot of people do naturally takes huge effort for me, cooking a meal, travel, planning, social difficulties, sensory sensitivities.....

This thread was never going to go well, which you obviously knew.

Well played OP.

This will degenerate into shitty ableism and claims that we all get millions in benefits (I have never claimed in my life) and that we ‘are all a bit autistic’.

Lots of autistic people will be goaded by those who don’t know what they are talking about. I assume you knew that.

@Cubic sorry I didn't mean you, I meant in general there seems to be on the rise in this view. Or at least I have experienced that. People assume when you say your child is autistic and they respond that "everyone is now" blah blah blah.

I feel desperately sorry for anyone struggling as there simply isn't enough resource to go round. It is truly heartbreaking!

Perhaps we should have a separate topic for ‘Real v Fake Autism’?

Greta may well have been like the same when she was 8

Rubbish. I’ve seen several very prominent autism advocates speaking about this lately. Very tentatively as they knew they would get shouted down almost immediately.

This is a very important discussion to have. We are facing a sudden tidal wave of autistic nonverbal adults with very high care needs and minimum executive functioning or understanding. Who knows why, but that’s what is being uniformly reported. Until we untangle these people from ‘quirky but will live independently and work as a computer programmer’ types, we cannot grasp how many adults will need care and if so what care. It’s essential for future planning.

I think its very likely the diagnosis will be split.

I can see that right now saying my child has autism gives somone next to no information about what to expect. This must be particularly hard for someone who wants to convey very high needs over the phone or on medical records.

I am not convinced it will be beneficial. It will just gatekeep services. Carers will be told thier child is too profound to benefit for something or not profound enough.

I also get so tired of the two extremes people use for this debate. Theres so many people who simply neither extreme.

No, level 3 was aimed at those with the most needs and level 1 those with the least. Some people with autism describe themselves as having some dats at level 1 and some at level 3 etc ofcourse there are those who are just level 3 all the time.

The same with communication. Some people ate non verbal or have low functioning language all the time and some people describe themselves as having some non verbal days and some verbal days. There are also those who are selectively mute; can't talk in some situations/ conditions.

She wasn’t.

Its stunningly rare for somebody who is non verbal and has little understanding at 8, to suddenly be highly articulate and independent as an adult.

The vast majority need lifelong care and never ever catch up.

Can I ask what was your motive for starting this post?

The chance of my 9 year old who currently does smear, throw food up walls and eat sand becoming a humanitarian later in life are very, very slim.

I’ll be grateful if he can make a sandwich and tell me verbally if his stomach hurts.

In the main this hasn't happened though?

Why focus on verbal communication? That is one of many ways to communicate, none if this writing on mumsnet is verbal communication.

It is the same thing.

The difficulties some people face can be very different but that doesn't magically make the cause any different

Would you like doctors to pretend?

Because the most severe form of autism is where the person cannot even speak and communication is minimal.

Trying to make out there’s a huge overlap between this profile and the ones ‘too anxious to speak sometimes’ is utterly erroneous

Is their level of support need not really obvious without a separate/different diagnosis though? I'm not against it necessarily, just wondering how much difference it would make.

Have you tried sign language?
or pointing at pictures?

I used to eat paper, grass, tree leaves abd make wall art with ketchup, mustard abd A1 sauce at his age,

I could also do trigonometry in my head and answer all the jeapordy questions on TV