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.

Yes but everything is due to austerity in a sense. You have to draw the line somewhere. Autism dx is currently 1 in 20 in Northern Ireland and on the rise. Yet in other areas of the world the rate is much much lower. At what point do we differentiate normal variations in personality, life experience, struggles etc from neurodivergence? When the rate reaches 1 in 2?

I don't disagree but at the same time it really does feel like a spectrum of the same condition. I feel like autism remains an important descriptor for people like those in my family who are verbal and, despite social differences, have social abilities because underneath that there is a fundamental similarity. The spiky profile is there. Often they are drawing on high skills in some areas to compensate for major deficiencies in others. They can look very "functional" at points and yet be very unfunctional at other times, in ways that seem completely unbelievable to a casual or outside observer. And I have also known a lot of people who outwardly appear very autistic and I suppose you would say disabled and to my shame because I only knew them in one context I hadn't appreciated that they are also doing PhDs, working in various jobs, raising families, able to express a lot in written words just not via speech etc. and I was surprised to learn this. I know better now. All this seems to be connected by autism and I see these groups of people really as more similar than I initially understood. However, the type of support people need is very different and that needs to be captured somehow.

I think what i mean is has it being 1 in 20 led to services being shut down for profoundly autistic people. Like was there a support group for adults with profound autism that has closed because able autistics said autism was a super power and it was not needed. Or an after school club that used to support profound needs but demand and funding has shifted to a different profile.

Its just I've been doing this twenty years and there was no clubs twenty years ago and none now that arent parent run and led. So there is an active autism girls group but they didnt take away from my son. There was nothing before.

@Sutant0
"an autism diagnosis"
This thread is about differentiating between multiple and infinite "kinds" of autism, supposedly, under the misapprehension that better categorisation will lead to better support. It won't. Support is what it is and it won't improve without more investment. It certainly won't improve with introduction of arbitrary categories.

The NHS has just written a major taskforce report on adhd- it’s actually under diagnosed in this country! Autism it’s so much more expensive to diagnose so even harder to diagnose- it’s 1-2% in the uk.

www.england.nhs.uk/long-read/report-of-the-independent-adhd-taskforce-part-1/

That sounds highly challenging but we try to understand. I am in awe of a friend whose son is such high needs - she must be exhausted

How on earth are they able to determine that ADHD is underdiagnosed?

The dsm is used by some private services, which more people are turning to due to waitlist or non existant services.

Some nhs dx's also include a 'level' or clinitians tell their patient in the same way Aspergers still gets thrown about.

The level dx'd will only change if adequate support isn't given. If levels changed there would be an acceptance of those with the most needhaving a few days of little but this doesn't happen. This isn't an argument it's just factual.

I personally don't want levels, i'd like a complete separte dx for those with the most need. I don't really care what it is called. I'd accept pink and green jelly dx if it meant a clear understanding of presentation and a move away from those who have a much different presentation and are more able/ higher functioning etc. Those with severe/ profound autism would benefit massively from the dx being separate again.

I replied to comment about levels, to show why they don't work ie people saying the levels fluctuate meanwhile those at level 3 are still waiting for a level 1 day.

I did include the dsm diagram earlier to show how the dx has changed and how it is an umbrella dx.

Posted for clarity as getting fed up of notifications when you keep quoting me.

It's difficult. I have two children who have autism. My DD is high functioning and she masked until she was 8 and got diagnosed at 11. She hates the fact she is different or feels different, although she does now have a friend that's her first friend since she was about 6.
My DS is very low functioning but he is so happy (most of the time). He's only 5 but he's more in his own world. Things that don't interest him, he doesn't engage in, he doesn't understand about social norms and I don't think he's capable of masking. He's non verbal, in nappies, has no understanding of danger, has pica and needs constant supervision. It's harder for us as a family but he is much happier than my high functioning DD.
How would you decide who has it harder? Who is going to struggle more in life? Both my DD and DS are going to have struggles but just because one is high functioning doesn't mean she doesn't need as much support as her brother.

Read the independent report carried out by highly regarded professionals in the field. Our rates of diagnosis are lower than the rest of the world. The true picture of adhd has been hijacked by those in social media forums such as MN belittling the condition. That is recognised in the report .

I’m not looking at the support as such - this we get thank goodness.

I spent a holiday in a paradise with a son who does not want to be here and who ranted incessantly like some deranged person. It’s heart breaking.

I know there is no cure in our lifetimes but maybe in a couple of generations time a cure prevention would be good. I want part of the gov analysis to dig deep eg Why was I not given the CMV virus when it was well known that older mums lose their immunity and I was exposed to it from having my first darling child. Why? In the US they inoculate but not here!

why does no one ask is there ASD in the family when someone is seeking to get pregnant and counsel them on the real possibility they could have a heavily disabled kid.

Why are such people not advised to try to avoid viruses, zero alcohol and onto a low stress regime .

There are lots of conditions which can affect someone very severely or relatively mildly and we're not leaping to re-categorise those.

I know someone with schizoaffective disorder who successfully parents her children, looks after her home, has had relationships and a job. She has insight into her condition, knows how to manage it, and is compliant with medication and the community mental health team.

I know another who is on 2:1 observations and has been hospitalised long-term because her schizoaffective disorder is treatment resistant and she is hellbent on suicide. She has no insight at all, would not take medication independently, and despite the 2:1 observations has managed to get at harmful items and substances when a nurse blinks.

They have the same condition but they are worlds apart in terms of functioning - just as you see with autism.

The differences seem to be

• I have never seen parents of those with severe / treatment resistant schizoaffective disorder creating long posts about how these should be regarded as different conditions, whereas they proliferate all over FB and MN
• I can't imagine opposition to Person A "speaking for" those like Person B given that B will never be able to articulate her difficulties whereas A can, in fact it seems pretty likely that A and her insight would be welcomed
• Equally, I don't see TikTok heaving with earnest teens claiming that having the occasional earworm is exactly the same as schizoaffective disorder and self-diagnosing because they've got a tune stuck in their head

So it’s underdiagnosed because other areas of the world have higher rates? For example, the USA? Hmmm.

I guess the difference is that your dd will
likely go on to live an independent life whereas your ds will always need care ?

Interestingly, the test retest reliability of the ADOS has been shown to be quite poor. The line between autistic and non autistic can be quite arbitrary at the milder end. I’ve come across parents who’ve had 3 private assessments with the third being the affirmative one. There’s something dodgy going on.

I'll explain. I have a son who is low functioning. Social media is filled with people who are able to talk, makes decisions for themselves, care for themselves to an extent, even during a burnout phase. My son has no hope in hell of doing that. Intellectually he is one years old at the age of 7. I am probably on the spectrum too, as well as other family members and we are ALL different, but my child is VERY different in functioning.

The trouble is autism is becoming something people associate with the former example, and even well trained professionals don't understand the extent of their support needs because of this myth that all autistic people are just people who struggle with sensory overload. We have been to countless groups and talks that solely focus on this, and offer limited advice for those who are not intellectually able to understand anything or are UNDER sensitive to stimuli.

You might say this is just commorbidity with SLD, however NO professional is interested in diagnosing his SLD and are happy to just keep it as GDD and ASD, but it isn't a delay, it is SID/SLD. I had to go to two tribunals to get his needs recognised by the LA and DWP. They won't even diagnose his ADHD either because of the 'severity' of his autism, but won't give him a diagnosis of 'severe' autism.

When you need support or medication, a diagnosis and a level of severity really speaks volumes, rather than having to read through a ton of evidence to come to a decision - which is usually the wrong, as professionals cherry pick evidence to decline, rather than offer help.

I do think there needs to be a clear distinction between those that need support and reasonable adjustments, and those that need 24/7 supervision.

Then why not start a thread about that?
You, perhaps, unwittingly, derailed the whole discussion by your original post. Now, people are more focused on competing about who's got it harder instead of addressing the points that you wanted to talk about.

But, as sensible as your questions might be, I still don't understand why categorization would make a difference here. Surely, ASD screening should then be universal. Or are you only suggesting that it should be given to those who have family history of autism in severe form?

I agree - there are very different levels of autism.
My son has what would have been called Asperger's. Most of his teachers are shocked when told his diagnosis. He's a head in every subject, mostly deals well with life. A close friend's child also has autism, but she can't speak, will always be in nappies. Has no idea who her mum is.
They're two extreme ends of the same diagnosis, which I feel is wrong.

Nope around the world. You need to read the report. The inaccuracy given by some parts of social media is stark ie adhd is just traits we all have and tik tokers jumping on the bandwagon.

The report shows how in the uk it’s under diagnosed, under recognised and under treated. Women and girls have historically suffered hugely from this and it’s not ok given the massive impact it has which they outline

I’m between a rock and a hard place, never got an education and never been able to work or keep a job but not disabled enough for benefits, first half of my life battling the job centre and taking jobs I knew I couldn’t do and being immediately fired never had a friend or life and have no pension. My parents supported me on and off and now I’m married and we struggle financially because he has support me without help and he works out all the bills and stuff I don’t understand but suiside has always been my plan b for when I can’t do it anymore or I have to go back to looking for work or don’t have him for whatever reason and no parents.
I would love to have the support of those who are slightly more disabled than me.
I was also a late diagnosed because my parents didn’t believe in labels. Now 42.

I fully agree. My son is autistic, but most people would never guess. I'm almost definitely autistic but I mask really well and have a brilliant job/ life (though I do find everything hard and struggle sometimes behind the scenes). I am a world apart from someone who can't look after themselves and I think it undermines the struggles of people who need constant help to categorise me and them in the same way.

It’s funny, because from my point of view social media has the opposite effect- I’ve had nothing but targeted ads suggesting that I have adhd and profiles of mid life women coming to terms with their diagnosis. Absolutely zilch coming my way to state that it’s over diagnosed. This has also been the experience of my peers and there are multiple media articles describing this phenomenon.

Totally agree with this.

I haven't read the thread but agree the diagnosis needs to be sorted. I have worked in education specialising in asd for over 20 years.I come from a family with the gene and many of us (including me) are on the spectrum. I strongly believe the issue is ignoring the co morbidity of asd and the effects asd has on other conditions. ASD and learning difficulties is different from asd with executive function difficulties, asd with global delay, asd with anxiety etc. My asd was missed for years as family members asd came along with other health issues but diagnosis seems to stop at asd. Working in education i still come across so many professionals who doubt diagnosis when the young person appears to be coping well.

And still it is under diagnosed as per the research done by the NHS and experts in the field. The report is there for you to read.