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.

If he mostly deals well with life he wouldn’t meet the threshold .

“Experts in the field” doesn’t impress me 🤣

OK but NHS experts in the field impresses most more than Mintypanda off Mumsnet.

Is that you, Michael Gove?

I’m not trying to impress anyone 🤣 anyway who’s to say I’m not an expert in the field? I’ve worked in autism for 21 years and have a published research record.

This subject again! 🙄 Yes we get it. Only those who can’t live independently are allowed a diagnosis. Everyone else is simply fine and don’t have any struggles or difficulties. It’s a race to the bottom as usual. The competitive severity merry go round of mumsnet rears its head yet again.

This is what annoys me about those vocal groups usually online who just go on about the benefits of autism such as being highly intelligent etc, and say things like autistic people are perfect it is just society that is wrong, but then completely ignore how hard it is for someone with level 3 autism and their carers, like my cousin who is 30 years old but is still completely non-verbal, doubly incontinent, needs constant round the clock care, has to wear a crash helmet because he will smack his head into a wall and give himself a head injury as a way of stimming etc. I think it is OK to admit that there is definitely something seriously wrong with him and if that type of autism could be cured then it would be a good thing.

Yes.

I am a well trained professional, including being trained in sensory integration. I understand. I don't need to see your diagnosis or category. I need to see a person I am working with because two people with the same severity of symptoms will have vastly different needs. A piece of paper with a diagnosis isn't going to give me the information I need.

Now, I suspect you are referring to doctors here. And I will hazard a guess that not many doctors are trained to look at function to begin with. Regardless of the condition. They look at symptoms. That's their thing. Which is why we have AHPs looking at how conditions actually affect people and we pay very little attention to diagnosis to begin with.

There is already a clear distinction between those who need reasonable adjustments and those who need 24/7 supervision. It's based on a functional assessment. And for the purposes of the functional assessment, it makes no difference whether you have ASD, schizophrenia, TBI or a stroke. The process is the same. Or, at the very least, it should be. It's about looking at the person in front of you, not at their medical records.

Ok so you should know better then re ADHD and should have heard about the NHS Taskforce findings.. Care to link your published research record, that could mean anything.

Well said- agree 100 per cent

I absolutely hate her thesis.

i think greater recognition of the “long tail” of neurodiversity is a really good thing.

Both me and my DS have ND diagnoses (ADHD in my case, ADHD and ASD in his). We’d definitely be in the wider net of diagnoses that she is sceptical about. Unquestionably the diagnoses have been transformative for both of us. I can best describe it as trying to get through life using the wrong instruction manual. Once you are handed the right instructions everything makes much more sense.

I paid for a private diagnosis for myself and have used fewer NHS resources since diagnosis - I kept circling back to my GP with anxiety and depression but I am managing much better since I’ve started recognising ADHD is at the root of a lot of it and managing my life better has improved my mental health significantly.

I am hoping the diagnosis for DS will help prevent him spiralling into the same difficulties. Understanding his differences means we can parent him better and he is learning himself what he needs because he has that self-awareness now.

She talks bullshit and has zero expertise re cancer or autism which she is referring to in order to sell a book.

She’s not popular alright- many find their dx validating even if it does not bring tangible benefits in terms of QoL. Have you read her book?

”She talks bullshit” - how nuanced. My goodness.

This isn't exclusive to autism though, this is the "social model of disability" which professes that there is no such thing as disability per se, only a society which disables people - e.g. if society were set up for wheelchair users then theatres would have no seats, which would be disabling to those who are not wheelchair users. So, the theory goes, it's not being unable to walk which is disabling, it is a society which makes no accommodations for that.

I don't think it should come as a huge surprise that this black-and-white approach appeals to rigid thinkers and is particularly embraced by the online autistic community.

I also don't think it should come as a huge surprise that "vocal groups online" are full of complete twits, who think "nuance" is French for cloud, enthusiastically grasping the wrong end of any given stick, whether that's groups about Brexit, or geo-politics, or St George flags, or autism, or anything else.

She has zero cancer or autism expertise to draw from. Any of us could publish inflammatory views without expertise in order to make money.

I wish people would learn what the autism spectrum actually is too. It is NOT a linear scale. It’s a spectrum of traits/symptoms/signs….like the colour spectrum. Stop referring to mild end and severe end…they don’t fucking exist. You could say that there are multiple scales for each trait/symptom category within the spectrum if you must use linear scales…..that’s where the spiky profile description comes from.

@noras - I posted much earlier in the thread - in response to your first question.
You have somewhat changed the goalposts by discussing cures and biological causes and potential parental causes (alcohol).
Cures and prevention are a bit less related than you may think - for instance if I “get” the flu or a cold (virus) I (very unlikely) possibly could have prevented it but once I have it I can’t cure it.
Brains are “plastic” in some sense in that (if you look at some conditions) they can adapt and the person can regain function. MOST structural or other brain anomalies and especially nervous system damage cannot be repaired. Ever.
if you watch a spinal surgeon prepping for surgery (there are lots of shows on tv) they talk about 1mm to the left it’s permanent paralysis, 1mm to the right death or uncontrollable haemorrhage etc.
White matter damage cannot be reversed etc.

So if there was ONE cause for autism (being neurological in nature) chances are there would or could never be a cure.

And CMV is just one of many viruses - how can you prevent contracting every virus? The flu can cause as much damage to a foetus especially in the first trimester and that because of the temperature risks (which is why that orange loon Trump ranting about paracetamol (which reduces fever) causing autism is so very dangerous). How can you stop yourself contracting flu?

Unfortunately the ones I know don't seem to be aware at all. Although I am in no doubts there are people who are aware they are rarely the ones "self advocating or "self diagnosing" on social media. They tend to struggle quietly in the background. I have witnessed a huge change in views around autism in the last decade since my child was diagnosed. Then it was recognised as something that did cause massive struggles now it seems a lot of people are self diagnosing it. The widening of what consistutes ASN needs in scotland in schools has also caused massive issues. This needs streamlined to.

I never mentioned mental health. I am very aware that mental health services are seriously underfunded. They need to be prioritised massively but I doubt they will be.

@Catza

Thanks for explaining your side. I do agree with you in theory, my issue was that people often don't read the functional assessments. A DWP assessor didn't really understand my son was severely mentally impaired, hence we had the hassle of going to a tribunal and had to provide mountains of evidence (which in the end a DWP rep didn't even turn up to defend their decision). A clear label means families don't have to go through so much fighting to get support. We have had to do this twice in 18 months because even though we had functional assessments, they just got ignored because the people assessing didn't understand, or make the effort to understand them because they are not doctors.

It is much harder to argue against a functional assessment AND a specific, graded diagnosis because everyone can see straight away there are high support needs. And we don't label mood disorders as mood disorders, they are labelled as depression, bipolar 1 and 2, schizoaffective disorders, dysthymia, cyclothymia. Same for personality disorders, which are in clusters. I don't get why you can't have similar for ASD. I know people don't fit tidily into one category, but neither do psychiatric or physical health conditions.

But you must realise that not everyone has a spikey profile and some people cannot function in any area?

My issue isn't that ASD should be better categorised, as in ranked, but the diagnosis should be different. Many of the adults diagnosed late would not have met the criteria for diagnosis of autism when they were children, and many children/young people diagnosed now, wouldn't have been in the past.

I take issue with the verbal, educated people who now are diagnosed as having ASD thinking they can speak for all people with autism, including those non-verbal/learning disabled people who will never live independently/have a career/marry/have children etc.

I’m sorry that’s your experience, but people who mask have a very difficult life in many other ways, often waking up every morning feeling suicidal, spending all day every day with extreme anxiety, feeling constantly exhausted, feeling like they can never be themselves. The outwards appearances often mean there’s no help forthcoming.

People who mask are struggling, really really struggling. They’ve just learned a couple of tricks that stop others seeing the struggles. But each of these tricks drain the person even more. They might be different struggles to what your DD is facing but they are very real struggles nevertheless.

The more people are unnecessarily diagnosed with a “clear label” the more cynicism will spread and the less accessible these supports will become. I can only speak for my area, but private assessors are essentially “printing” autism diagnoses and schools are becoming increasingly jaded/ cynical with regard to these diagnoses and the implications in terms of SEN resources. Autism diagnosis should be a slow, controlled, and careful process.