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?

Support in education.

Support in mental health services.

Support for sensory differences.

That's just a starter for 10.

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.

The people that need to know the details of someone’s ASD diagnosis, will know or be told. That’s is the individual with autism, parents, carers, schools, etc. But for some reason, some people will no involvement with the autistic person feel they must know about it and therefore this neat little box must be created according to some.

But what is that ‘support’? As in, specifically? You can’t just say ‘support’, what?

My son is an adult. His main diagnosis is severe autism with severe learning disabilities. In the past when I’ve said he’s autistic, some people have been surprised as one person said to me “I didn’t realise it could be that bad” so now I say severely autistic if asked.

Mental health - not being removed from NHS CAMHS waiting lists because they don't routinely treat children with ASD for mental health issues.

Education - inadequate school places for children who can't cope in mainsteam but don't fit into local SEN schools. More support in the classroom for masking. Schools not understanding autism and failing to make reasonable adjustments to enable children to cope better in the environment.

Sensory difficulties - largely ignored . In our area unless a child has physical difficulties they don't meet NHS criteria for sensory issues, even if they are severe enough a child can't attend school.

This list is not exhaustive just things I have experience with my 2 children both with ASD.

CookieMonster it is clear that you don't have first hand experience of ASD and make assumptions based on how you see a child. If you saw my children, especially my eldest you would have no idea of the difficulties they face and the impact it has on them. You can't see autism, therefore it is very very easy to downplay.

the sad reality is if people across the spectrum where better supported on a day to day level then less people would reach crisis point where they require a much higher level of support than they would have otherwise.

Absolutely.

My son has autism and ADHD to.
His support in education is that he gets an exit card. He can leave at any point he is unable to cope to go to the special d needs hub part of school.
He can take his class in the hub if he isn't coping that day.
He can sit in a dark room for an hour if he needsm
He can wear ear buds
He gets one to one in some classes.
He would also be classed as high functioning.
He is taught how he can help him self before he gets to melt down stage. he is given counciling to deal with all the negative reactions and feelings and aspects that come with it.

Back in my day I would have a melt down and the teacher would step over my body crying on the floor and get the other children to point and laugh at me
Just some examples of how support in education could help.. though it doesn't take much brain power to think how someone who is autistic could get support ...if you had anynreal idea

Sometimes its more helpful to have multiple diagnoses rather than trying to make one diagnosis (ASC) describe all the aspects of everyone that is on it. People with ASC often have other conditions as well, like mental health issues or learning disabilities- these inteact with the autism but knowing a person has bith does help tailor the support.
In the settings I work in, a person like OPs son would be probably be described as having a diagnosis of ASC and a learning disability.

That would mean he would be able to access all of the learning disability support and it would be tailored to his needs as a person who also has autism. The learning disabilty makes more of an impact into his care needs that the ASC would.

The autism is there regardless as that is the diagnosis- a massive spectrum that will affect people in widely varying ways.
The degree of learing disability is separate as many people have ASC and do not have a learing disability and some will but it is to different degrees. The autism spectrum is not a line and 'severe autism' does not correlate with severe learning disability. I have known people with severe learning disabilities who were also (years ago) diagnosed with mild asbergers. And I have known people whose lives are intensely affected by their autism but have no learning disability at all.

Learning disability is the combination of impaired social functioning (reduced ability to cope independently) and and impaired intelligence (significantly reduced ability to understand new or complex information and to learn new skills) these have to be present before age 18 to count as a learning disability. This can be happening alongside autism.
The brackets for whether the learing disability is mild/moderate/severe/profound and multiple are assessed and diagnosed and will correlate to different types of support.

I think that having both diagnoses, when needed, helps get more of the right help to the people who need it, because ASC is such a massive spectum and has so many potential ways it can present- it doesn't really help to bracket people off in terms of how "severe" their autism is. Especially when that can fluctuate over a lifespan and can be dependant on the situation, and won't correlate to types of support needed.

But specific issues like being unable to live independently or unable to independently perform tasks of daily living are more related to the learning disability than they are to the autism even if they are all related for that person. Especially in terms of practical support like special schools, supported living arrangements, annual health checks, specific benefits, continence care etc that is all learning disability - a person might be very very affected by their autism and not need any of that particular sort of help because they do not also have a learning disability.

Yes that frustrates me too ,people can only speak for themselves and their needs they can't speak for the needs of everyone with autism .

And thinking about it, this thread just seems like yet another variant of the shitty ND ones we’ve seen so many of lately. OP has a child with autism this time so it must be real though eh. Same format and faux naivety. Yawn.

I'm confused already. High suggests high-functioning. So it's now the opposite?

So, it's come full circle - like everything else in childcare and education. It used to be that the interests of the individual were celebrated and the social model of inclusion held sway: adjustments, could be made to the environment, we were told, and the individual who experienced ASD would manage more easily. We were encouraged to see things from their point of view: child-centred.

Now children with ASD are being levelled on the basis of the adult support which they will need - so it is a labelling based on how their condition will affect others.

I find the illustrations rather bleak, especially the one for the child who will need the most adult support.

The levels are useful for within a narrow use - that of deciding on levels of support needed. Although this can change a good deal, over the years.

I gave you an example @Cuppasoupmonster

I'm struggling today.

I also need support with accessing health services. I find it hard to advocate for myself.

Also in my case I have physical disabilities and the autism and the physical disabilities become jumbled and how do I know what is autism and what is physical?

I can't physically write well with a pen. But I also get really anxious when I have to write with a pen so is using a laptop a physical disability adjustment or an autism related one?

@ohioriver do you not have a diagnosis for the physical disability?

As for support accessing health services, again I’m not quite sure what this would look like. It sounds like the sort of thing you would need is a personal assistant type role but this obviously isn’t something provided by the NHS unless somebody is so disabled they are unable to carry out the tasks for themselves.

Which is exactly why I think really 'severe' autism needs a separate name. There's no level of preventative support to stop my non verbal son needing nappies in his 30's, and constant supervision and physical restraint whilst he's awake.

Yes I do @Cuppasoupmonster

You're coming across to me as quite rude and hectoring. I've tried to explain. Why can't you believe me?

No
My daughter is fully functioning but has been hospitalised multiple times. Her mental health difficulties are a massive disability and have a huge impact on her life.

There is no either or, and a whole host of traits that vary hugely within an individual.

I literally gave an example of a physical difficulty interacting with my Autism?

I don’t disbelieve you @ohioriver but the disconnect in my understanding is the individual issues of people with ASD (or other disabilities for that matter), and what actually can or needs to be done about them that is proportionate and realistic. If that makes sense.

Define severe. My daughter has severe autism.

Then surely you can define severe?

the disconnect in my understanding is the individual issues of people with ASD (or other disabilities for that matter), and what actually can or needs to be done about them that is proportionate and realistic. If that makes sense.

Do you think that it's proportionate and realistic for autistic children should have equal rights to health care and education? Because I've given some examples of how they don't.

Why don't you think that this lack of equality extends to adults with an autism diagnosis?

Does he not have any comord disabilities along side such global development delay as well.

Genuine question as the only people ivnworked with and are friends with children with sever needs have other disabilitys along side autism.

@Cuppasoupmonster I don't understand what more you want me to say? Sorry but I don't understand

I’m not the one with the issue. She has severe autism but it doesn’t fit the picture in the op. It is still severe.