That ASD needs to be better categorised

[Noras]

As someone with a DS adult who seems destined for supported living or maybe living independently with PA wrap around as AIBU to think that ASD should be better defined.

i read about people who managed to mask ASD until say aged 52 and I can’t help but feel that it’s a World away from our lives as carers of DS.

He is at university with 37 hours per week PA support.

There is no masking with DS. We have just returned from holiday and pretty much all the staff knew of DS by the end eg someone said ‘oh he’s your son we were trying to think of ways to help him engage in the events’ etc

He has low self esteem and really low moods.

He is petrified of the outside World so we have to facilitate any social life be it with a PA or a drop off to a safe place and then we are on tender hook a waiting to pick up.

Social services class him as highly vulnerable - he’s like a 12 year old in some ways but an adult

I or the PA agency organise all his taxi pick ups and drop offs and all his rotas etc

I organise his activities eg clubs / events any social thing

I organise his clothing / dentist / even reminders to take meds / brush teeth etc

We run his finances / he has no interest - we discuss with him and he just nods

There is no masking - he talks to himself / he can rant in an outlandish way

it seems so wrong that it’s bunched in with all this late diagnoses stuff as it’s so so different.

im not decrying all this ‘ I masked until aged 53’ but it seems like a different thing entirely. People need to understand that otherwise my DS needs won’t get his needs met eg he struggles with public transport and will need a seat so he does not get brushed against and as it is he has a shut down and goes onto a weird sleep.

Sadly people have a level of sympathy and my concern is that it’s being eroded.

Perhaps we don’t have levels here in the UK. His diagnosis letter said something eg he will struggle with life skills and need support or words to that effect.

Incidentally I read an article in the New Scientist this week about the work on categorising autism into subtypes.

Not sure if this link will work as it is behind a paywall but I will give it a go:

What if the idea of the autism spectrum is completely wrong? <a class="break-all" href="https://www.newscientist.com/article/2509117-what-if-the-idea-of-the-autism-spectrum-is-completely-wrong/" rel="nofollow" target="_blank">www.newscientist.com/article/2509117-what-if-the-idea-of-the-autism-spectrum-is-completely-wrong/?utm_campaign=RSS%7CNSNS&utm_source=NSNS&utm_medium=RSS&utm_content=currents

Unfortunately I can't read the article @ZenZazie but thanks for the link. That's very strongly my concern too -- autism isn't one thing, and no one's insterest is served by lumping together such diverse people.

There are several disjunctive clusters of characteristics that we call autism, which the assessments look for. But diagnosis by means of these clusters reveals nothing at all about the cause of these characteristics. Lots of physical illnesses display fever, but we don't make 'fever' into a standalone condition.

Another condition that is diagnosed just on the basis of symptom clusters, without any reason to assert a unitary cause, is schizophrenia. As with autism, it is posited that there may be several distinct disease processes that give rise to these symptoms.

Quite a lot of people with autism do also develop psychosis and may be diagnosed with schizophrenia, as with a family member of mine. My own view is that one of the several conditions that we call 'autism' is also one of the several conditions that we call' schizophrenia'.

Thats interesting didnt they used to call autism childhood schizophrenia?
I used to be a mental health nurse and schizophrenia is as diverse as autism with some people who dont respond well to treatment and are floridly psychotic a lot of the time ,at at the other end some people who are maintained well on treatment and live a relatively normal life .

The article that @ZenZazielinked to pops up in various forms on the thread (I posted the original research a couple of weeks ago, and I wasn’t the first poster to mention it!). Have a look further up thread and you’ll find it referenced.

Edited for clumsy fingers!

New diagnosis for autism receives a level 1, mild impact, level 2 moderate impact and level 3, severe impact.

Not in the UK.

The NHS don’t use that but they might write ‘will need support with life skills’ etc

For sure we did not struggle with getting PIP efc but we also have a social care support plam

I Think that a large divide is can they advocate for themselves and express their needs. For me , this is a major issue.

Today has been the usual emails to the care agency / mentors etc. I took my so. Swimming ma had to negotiate lane space so he did not get brushed against.
Also I have just been trying to get tablets into my adult son - it’s a challenge. My son struggles to speak for himself so he needs support to prompt him to communicate eg with emails etc. He has only recently been able to express that he has pain- it took him until sixth form.

I have 3 autistic kids ranging from non-verbal &globally delayed developmentally to high achieving academically, and in many ways to many people her autism wouldn’t even be noticed.
They both suffer, just differently. My NV kid is the happiest person I know, he lives his life and has no idea that people stare at him and so on when he’s stimming in public or being loud or whatever it is, so he doesn’t care and happily does his thing. He needs lots of help physically.
my daughter? She is very aware of every way she is different, every time she misreads a social cue, every time she gets excited or upset and the mask drops, every look and stare and snigger. It’s causes crippling social anxiety, she’s an incredible musician but can’t cope with even me in the room when she plays and sings because she is so anxious about being judged. Her needs are much more about mental health, she desperately wants friends, but really struggles to maintain friendships. She has an eating disorder, she has self-harmed with razors. She can’t maintain a job.
what I’m saying is these people who you perceive as having an easier time than your child are still struggling, they still have horrible times because of ASD. But many of the people who are trying to normalise ASD or say they don’t want to change it are just trying to make the world more accepting.

I'm also autistic, very late diagnosed. I was your classic high flyer in everything until I hit puberty and teenageness and then the wheels fell off. Now I understand why I feel how I feel, why I couldn’t ever seem to manage life like normal people, and I am at peace with who I am. I would much prefer not to have to live the way I do in order to manage but I’m much less bothered about appearing normal to others, and that is massively freeing. Even with all the struggles I worry that a cure would fundamentally change who I am, and that’s a scary prospect for anyone, and even more so an autistic who struggles with changing my brand of shampoo.

This is in the UK. Just this month. Categorised on a 30 page diagnosis report!

Yes, in the UK. My child's diagnosis report (from 2019) uses this formulation.

Indeed. They never used to, but the categories are used in the UK now.

I think your last paragraph is absolutely bang on.

Our son has very limited communication, and has some real extremes in terms of behaviour. He sleeps terribly, isn’t toilet trained (yet!) and can’t cope in a variety of situations.

I wouldn’t change him for the world. Curing autism would fundamentally change who he is. He’s more than his needs, but they make up a huge part of his personality and identity.

I would far rather people met him where he is, than force him into complying and assimilating with a cure.

I sort of agree with the above, but DC has good days and bad days (autism and MH issues). I’d do anything to take away the bad days. I don’t want to change his personality but autism, anxiety and other MH issues (directly resulted from autistic black and white thinking) are having such a debilitating effect. He cannot live independently even though no intellectual disability. If I had the power to change that and to make things better for him I would do so in a heartbeat.

Sometimes I think the people saying autism is a superpower etc must be high functioning in multiple ways. It doesn’t look to be a positive when I see how it’s destroying DC’s life. As I said no ID, but still high support needs. He can do things physically but not emotionally iyswim. And most of the difficulties come from within, so changing the environment only has a limited effectiveness.

Meeting him where he’s at isn’t enough. It helps, but only to a degree.

But he has a brilliant personality and I’d never want to change that. I just want more for him and for him not to be tortured as he is.

Yes you are right. We have a lot of neurodiversity in my family and the levels of support we need varies hugely. Myself and some members of the family have and will function in society, live independently but seem different and find things harder and need some adjustments. Two people in my family will be unable to live independently, can't communicate well but can speak, read and write and enjoy their special interests and have small amounts of independence. A child of a friend is a non-verbal adult who needs round the clock care and huge support to participate in society at all. Those three levels are world's apart to me.

ICD-11 is still more commonly used here than DSM-5 though isn't it? AFAIK there is nothing in ICD-11 or NICE guidelines about levels. If this has changed I would be grateful if you could share your source.

Its written on the diagnosis. Not possible to share that. Another poster upthread also had it on a diagnosis. Many private practitioners use DSM-5 and give a level. Cannot speak for NHS though.

Oh you mean some people are sometimes given levels. Sure, I don't think anyone's arguing it doesn't happen. I thought you were saying they do in general now.

No, sorry for confusion. Private practitioners are giving levels. Maybe all should?

Again, what is your source for that? You obviously can't extrapolate from one diagnosis letter and a comment or two on a thread what is the norm across all private services.

The 6 private companies I contacted last year all used ICD-11 and were NICE compliant.

Ours was an NHS diagnosis with DSM-5 and used levels terminology.

My ds was diagnosed in 2012 his dx is 'severe autism' on his paperwork.

Edit to add, this was nhs.

@Vound

There are a few that provide a level on diagnosis. Try a few more. Just because you didn't get one it doesn't mean others haven't

Only 6. There are lots of private practitioners.