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.

Exactly. Much of the time such Dx do NOT result in extra support or treatment.

It’s your opinion not fact and not what we’re being told by many many professionals.

My dc have needed a huge amount of various treatments for all sorts of things under the NHS. Some treatments need the additional info diagnosis brings .

My opinion has been informed by substantive research. Don’t you feel that at the rate autism is rising, young people like your daughter risk having their very real problems invalidated? Honestly I’m just curious.

The latest research and NHS taskforce re adhd disagrees with you. It’s well known how hard it is to get an autism diagnosis too.

Not at all. Within the sector I work in I see how hard it is to get diagnosis and how your hysteria just isn’t true. Most schools are helping parents try to get diagnoses and EHCPs not the other way round.

Autism rates in my area (NI) are expected to reach 1 in 17 by next year. Perhaps I’m biased by locality. I’m curious as to why you perceive my responses as “hysteric”?

I think really the problem is that support for ASD needs to be far better resourced, at all levels.

Ideally, yes. But with differing levels and presentations of need this is very hard to enact in practice. There comes a point where “autism specific” supports can actually be limiting. This is what drives a needs-led rather than diagnosis- led approach (eg Primary Care in Ireland). However for some children, I’ve found an Autism- led approach to be enormously beneficial (eg HSCNi autism service). Having an expansive Autism category makes it difficult to identify those children who would benefit from a more Autism tailored approach.

The uk differs, I really don’t have a problem with the Uk1% or even the NI 5%. It’s not an issue.

I’m going to be that petty person here and gently remind you that NI is in the UK. Sorry.

I have a 'high- functioning' child with autism and adhd, who thankfully copes at school with fairly minimal help. We're lucky that he also does fine at home and it's only outside those 2 spheres that he struggles more and the differences are more evident.
However, given how little funding and help there is for those that need it, I was taken aback when the clinician who gave the diagnosis suggested we apply for DLA. There are no additional needs that justifies extra financial provision for him. It made me wonder how many families are advised to apply who perhaps don't need it and therefore are stretching the limited resources unnecessarily

OP you feel that people with milder autism than your DC should not receive a diagnosis or that their diagnosis takes something away from your DC?
That would only be true if there were a limited number of people who could be diagnosed with autism at any one time.
Perhaps you worry that these people with milder autism might take money away from the support that your DC clearly needs? Rest assured that people with milder autism are not getting money for anything that they don't need.
People with milder autism are in just as much need of a diagnosis as your DC however. Because otherwise they cannot request the reasonable adjustments / support they need to be 'high functioning' people. It takes nothing away from OP's DC for people with milder autism to get reasonable adjustment to enable them to live and, where possible, work without discrimination or lack of accessibility.
Ringfencing and gatekeeping the diagnosis does not get the OP's DC anything extra nor does avoiding this gatekeeping take anything away from OP's DC.

Perhaps people would be happier if autism were mild/moderate/severe etc, rather than 'high/low functioning' etc? Plenty of conditions are mild/moderate/severe and this helps others understand the impact of the condition without people with milder forms having to pretend or be told that they don't warrant any diagnosis at all.

I don’t know that that diagnostic criteria will survive much longer. Research is going on into why autism presents at particular ages. One likely hypothesis is that autistic behaviour is more pronounced under stress - or, more accurately, most of the diagnostic criteria are signs of autistic distress.

But I do think as we learn more, we will understand how autistic brains develop and how they interact with puberty, for example. We know that they tend not to synaptic prune, for example, which helps autistic people to be great pattern-spotters. Chances are in former times the “wise men” or “mystics / psychics” were in fact autistic people, and this ability to notice the similarities in events which don’t seem similar was an evolutionary advantage for a tribe (last time all these things happened like this there was a famine/ war, for example).

My DD is quite similar to the OP’s son, these days. But her autism seems to have changed with age. I found a video of her aged 7 the other day playing with a friend. She seemed so unremarkable - so neurotypical, really. She wouldn’t communicate like that now. So it’s not just that it differs between autistic people - perhaps it differs during an autistic person’s life.

It’s possible your virus was an environmental factor, OP. Or it’s possible this is just the way your son was made. I don’t think it’s possible to “cure” autism. It’s just that it’s very incompatible with modern life in developed countries.

Did you apply and recieve it?

Its just clinicians might well tell everyone with a diagnosis to apply as a routine comment, but they arent actually necessarily aware of the process to be awarded it and that not everyone with a diagnosis will meet those criteria.

Then you'd have people dismiss our needs by claiming that mild = nothing wrong. And how would that work if you have a spiky profile?

Just because someone appears to have “mild” autism though it doesn’t mean they don’t struggle day in day out. Just like high functioning only describes how things seem to the outside world the same goes for mild.

Whatever. Overall in the uk the rates are 1% with a suspected 2-3% in reality due to under diagnosis. I don’t have a problem with any of those percentages particularly if it means children like my dc won’t be left to deteriorate in ignorance and be a bigger drain on resources in the longer term.

My point is that overdiagnosis will lead to depletion of resources like that you describe.

Resources require evidence of efficacy, which will be lacking in the face of overdiagnosis. As it stands we have limited evidence that diagnosis leads to improved outcomes.

This is me.

externally I’d be categorised as “mild”. I work. I have a job, academic qualifications.

but I can assure all those who want to minimise the effects on me I am very much affected and that it touches on every aspect of my life.

I know that a big part of what made me an easy target was my autism. I’ve worked through it with a therapy but it sucks.

it is torture. Every fucking day inside my head and in my body is torture.

it. Is. Not. Mild. Not for me. Despite what the world sees.

Not everyone who masks has friends, been to uni, works full time, has a husband though...... that will be a very small minority who probably had a really good support system

I hate to say it, but a child your describing does have it easier than a child who masks. It's the parents who struggle more. A severely globally delayed child has no idea what life should look like for them. They get all of their support and needs met and not a single person would ever argue with you about that child needing the support and care. Not a single person would blame the child or the parent for the child's behaviour because it's obvious that they are disabled.

A high functioning masking child doesn't look or act disabled so receives no support at all and tends not to have their needs met. Their parents have to really battle to get them support and people expect a high functioning masking child to act like a neurotypical child and they get treated differently for their violent meltdowns and outbursts ect.

In a lot of ways, a globally delayed child does have it easier, they have no desire to want to fit in and be like others. Their happy playing by themselves, don't want to socialise ect. High functioning tend to want to fit in, are often bullied at work and school because they look neurological but people can tell somthings a little off.

It is the parents who struggle more because it's not the child or life they envisioned, which I get,

But if you put watched 24 hours of a supported / needs met globally delayed child's life next to 24 hours of a high functioning undiagnosed asd child you would see that the globally delayed child does have an easier life, is happier, but doesn't have a life that most would want for themselves

I agree op. I watched a documentary film on YouTube a while ago called BEYOND. It's about an American lady who's two grown up sons have very severe autism. Her life is way beyond hard, even with a team of carers, she is lucky too that she has the finances for it. I couldn't even imagine a week in her life, I have absolutely no clue how she (and others) cope in her situation for the rest of their lives.

I have two ND daughters who cope fine in mainstream and will lead independent lives, it is a million miles away from what she goes through.

No, we didn't apply.

But that clinician knew all the background for our child (provided for diagnosis) and was aware there were no mobility, self care, independence issues etc that would meet the criteria for DLA. So it seemed odd that they would encourage us to apply, and they did actually suggest we apply, they weren't just telling us about it.
I don't know how difficult it is to get DLA but if families are routinely encouraged to apply regardless of need, that sends the message to them that they might be entitled to it, and in some cases could result in unintended exaggeration of issues to get the funding?

No it won’t. Allocation of resources is down to need.Efficacy is more likely with additional info and adjustments which diagnosis brings. If people are getting diagnoses when they don’t need them (which isn’t actually true)they won’t have need of such resources any way. The resources my dc need are higher tier and hard to get, they’re not handed out to willy nilly to those with no need. The bar is high.

But… you are talking about needs led now rather than diagnosis led. You’re contradicting yourself. And funding of resources is determined by evidence of efficacy and fitness for purpose. That’s how public policy works.

How does other people understanding their neurotype invalidate any other individual?