ASD…. Should there be another name for a more ‘severe’ version.

[iminvestednow]

Please forgive me as I’m new to this, I have a son with Autism. This is his only diagnosis. He is a beautiful, kind and wonderful son.

DS struggles greatly, although we have made fantastic progress in so many areas he will still never lead a ‘normal life’. He has no concept of friends, money or any social convention, he will need help to get by forever, he is extremely vulnerable.

I’ve noticed recently (great that people are more accepting) a lot of people saying, I’ve been recently diagnosed with autism aged 40 and it’s helped me so much. I think it’s great that people are getting support but does it dilute what severe autism is? Most of these people are competent fully functioning members of society and will never need the kind of help my son does. Should there another term to differentiate?

@IndieK1d

please don’t feel you have to explain or justify anything. Your support requirements absolutely no-one’s business but your own.

It is absolutely inappropriate for any poster to ask any disabled person to explain why they need support.

"I think this idea that those who are profoundly autistic are just happy blobs who don’t really have enough about them to get frustrated and upset by their disability is just another example of people having zero idea."

I think unless people have a child with those needs or work in that area, they don't generally understand how anxious people in that group can be. And lashing out is seen only as violence and not a manifestation of severe anxiety.

I don't think yabu op. I think it's allowed people to start self diagnosing the way they do with OCD too.

"I'm a bit autistic" etc and being expected to be taken seriously.

I didn't recognize autistic traits in my child because I was looking for the obvious ones. We could have saved a lot of heart ache if there had been another word for this milder version.

@xyhere you just described me

(Except I'm diagnosed - and not married - but other than that)

I find the terms Aspergers vs Classic autism and High functioning vs High needs extremely useful. Fortunately DS was diagnosed with Aspergers before they lumped everyone in together. People on mumsnet though hate it.....because spectrum.

There is a huge difference between the needs of those with Aspergers and those with Classic autism no matter how much of a bloody spectrum ASD is, I get so pissed off over it. DS has Aspergers and I've worked with children with Classic Autism. If lumping everyone in together meant everyone got more support then super, I'd be all for it! But it doesn't, ds got nothing from the NHS apart from a book list and a course I could go on that was 20 miles away and booked up for 9 months, if he was diagnosed now that they've lumped everyone in together he'd get the same but the wait for the course would now probably be more like 2 years!

I’m not asking why, I’m asking what - if a service is lacking, and people say they need more support, it’s not unreasonable to ask what this support would actually look like and therefore what is missing.

Do you have any idea why the diagnoses were combined?

I would also say there is more support for severe autism.. and rightly so... There should be more imo
But those deemed high functioning.. don't get any....he'll even life coaching would be a good start but that isn't offered. So where does that leave us.. burning out with a higher chance of suicide.

I think there is a huge difference between "never verbal" and "not able to talk today" though. Especially for an adult. It would make the difference between "can advocate for own needs, including the fact that sometimes you need to go off and hide, and won't be able to say that when you need to" and "needs 24/7 support".

Yes there is a massive difference but both are destressing.
Why has it got to be a competition. Why can't both people recieve the support they need.

Sorry I spoke 🙄

Being non verbal on those days effects everything in my house hold.. I can't talk to my children.. in that state I need to be by meld in my safe spot.... It effects my ability to clean... Cook... Interact with my children.... And as a single parent ... It's even bigger effect on the house..
So yes I may be non verbal... For a few hourr.. but being in that states brings over struggles.

I don’t think this is true. ‘Partially sighted’ exists as a category, ‘ colour blind’ , short sighted, long sighted….they are all specific variations of a failure of ‘perfect vision. It is actually similar with the cancer analogy ( and I speak as someone who has considerable familial involvement) pancreatic or lung cancer is the diagnosis, not just ‘cancer’ . The staging will present different symptoms for different cancers.

The problem is, I think, that physical disorders are more ‘easy ‘ to diagnose and to test for, because they are just that: physical. There is an interesting series on BBC radio at the moment, looking at more refined diagnostics are beginning to discover that some apparently mental health disorders are actually autoimmune or hormonal, and so can be treated by drug therapy. Autism obviously does not (yet) fir into the category of quantifiable, laboratory , replicable testing, so it relies on qualitative judgement . That is always going to be a problem when trying to convey the subtlety of an individual’s problems; but in order to access help and support for the rest of society, some degree of recognisable definition is very helpful.

Ds is verbal but still can’t use that to verbalise his needs properly especially when feeling highly anxious. Today the only way he could make his needs clear was by refusing to get out of bed, he hasn’t been able to talk yet today as that obviously takes resources he can’t access today.

Because money doesn’t grow on trees.

Yes, exactly this.

I really didn't mean to imply that I think people with classic autism don't experience stress.

All I was trying to say is that the challenges are different and somebody with "high functioning" autism will often face things that somebody with more classic autism doesn't.

So because of that I don't like labels like mild/severe or low/high functioning because I don't think it reflects reality and it can lead to the minimising of the actual disability.

That said I don't disagree that some way of differentiating would be useful for everybody. I'm just not sure what. Low/high support needs is better but still problematic. Perhaps independent and non independent autism? But that only really works for adults. Maybe bring back the Asperger's diagnosis under a new name? I don't know.

I have a friend whose child has autism and is severely disabled as a result. He will never live independently or work. He cannot manage basic daily living skills without assistance. She gave up her career to care for him and home school him as the education system cannot accommodate him.

What frustrates and often infuriates her is that she feels silenced by those who are at the milder end of the spectrum, and by their carers, who dominate the conversation and push an image of autism that bears no resemblance to the life of her child. They often shut down any attempt at discussion by parents and carers, using shame to silence them and insisting that only autistic voices can be heard. As my friend says ‘I am supposed to believe that a random person who happens to be mildly autistic understands my child better than me, his mother and FT carer. It’s insulting.’

Today I can't work.

Other stresses have pushed me to a point where I can't cope with work.

I'm stimming.

I'm cold. (Sensory thing)

I'm also physically disabled and being in this state makes my physical stuff harder to cope with.

So I'm sitting under a blanket and I'm about to sleep.

I've messaged my boss and told them I'm not having a good day.

If I wasn't able to access accommodations I'd be sacked.

The diagnosis of ASD shouldn’t be changed because some people are self diagnosing or are ignorant and talk shit. We should make diagnosis more accessible, education about autistic traits better and call out the ignorant instead.

So what your saying is don't learn to mask your struggles then you can get help.

I learnt to mask by being builled by children ,teachers, shouted at and punished into "normallsy" my family.. by near every one in my environment.
And by mask I mean making my self small and invisible so no one took notice of me.
But fuck us right.b

Just to throw in a slightly different perspective for some young people with ASD, having the same diagnosis as people with hugely different needs is challenging.

My DS who is 16 thinks he can't be autistic because he is not like people with the Kanners presentation. He has very fixed views of what autism is, and in his mind, it's not him.

That's not to say that his 'high functioning' autism hasn't had a profound effect. He was a masker who couldn't cope in school by age 10. By 10 and a half he refused to leave his room for 6th months as he couldn't cope with the outside world. He had (and still has) huge mental health problems from trying to fit in and massive sensory issues. He has now reengaged with mainstream education, (6th form). He refuses overt help because he doesn't 'identify' with his fixed view of what autism is.

This is always going to be a sensitive conversation but largely speaking I think that we should and concentrate more on a persons needs. That's my personal view.

What is concerning is the lack of services once a child receives once they receive a diagnosis of Autism. My NHS trust and many others disengage with parents once the diagnosis is made. It is a fight then to receive any mental health support because CAMHS services do not routinely treat mental health problems caused by autism. Why not? That's discrimination?

Classic Kanner autistics were high functioning (ie had IQs over 80) since the merging of Asperger’s and autism, the understanding of what high and low functioning means had been morphed. I would suggest this happened because so many self diagnosed/late diagnosed/less impacted individuals failed to read beyond the words and mistakenly jumped to the conclusion that “function” meant how well you managed to fit into the world. It merely referred to IQ, and learning disability wasn’t ever part of what was being described as “Autism”.

Yes, I think mental health services should be far more involved for all the reasons you state and more.