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.

So er, why did you make the job interview statement then? It was you, right? You’re muddling me now.

And vice versa. You’re trying to speak for everybody with autism!Your ignorance re the realities of autism for the those whose difficulties you choose to belittle is alarming.

I do think the concept of learning disability is muddied by an autism diagnosis too. For starters, many IQ tests are simply inaccessible to those with (high support needs) autism. You cannot quantify LD in the same way you can with say, Down Syndrome, where social skills are typically good and a child will engage with assessment. As others have said, children with Autism often display remarkable skill in niche areas. They aren’t learning in the way expected because they don’t have the joint attention / social imagination and communication skills to learn in the way the system demands.

That’s what I said. I did not say it was a uniform experience for either group. Perhaps their experiences could be described as a spectrum.

I haven't belittled anybody. I've pointed out that some people with autism are profoundly impacted. That isn't belittling, it's factual. I don't deny anyone with a dx is disabled, to have the dx you have to defecits.

I haven't spoken for everyone, i've spoken for myself and written in my opinion or similar quite often.

Shutting down these types of conversations quite often happens rather than have a debate.

You’re dismissing the realities of autism for many and dictating who is profoundly impacted.Many many verbal people with autism are profoundly impacted by it.

And other people who aren't as obviously disabled as your kid also need to skip queues. Just because they don't show their distress outwardly it doesn't mean it's not real.

Your son isn't as badly affected as some. Should he stop using accomodations that are available and that he needs just because other people are worse off?

No? Then stop gatekeeping.

Profound autism has been defined and not by me, i'm not dictating anything. The realities for this group are recognised as being dismissed and not included in research or services to the same extent as people who are better able to communicate. That is part of the rrason the definition has come about.

https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(21)01541-5/abstract

@Mintypanda
if I had a survey which asked 2 questions

1 - how do you feel before/during a social small talk conversation?
2 - how do you feel before/during a job interview?

respondents to select between 1 and 5 where 1 is happy and relaxed, 3 is ambivalent and 5 is anxious. I’d expect group neurotypical to largely cluster in the lower numbers for question 1 and higher numbers for question 2. I would also expect to have different clusters for group autistic.

Personally I’d score a job interview (structured, can prepare, have notes etc) lower than a social small talk conversation. But I do not claim to speak for all autistics.

This is such an interesting discussion - I hope it doesn’t turn into a bun fight because it is a discussion that needs to be had. I think most people here can recognise that the very able late diagnosed autistic people do not have the same difficulties in life as those diagnosed young who will need care for the rest of their lives.
The basic diagnosis of autism should indicate that someone has a condition that causes them disability in everyday life. I do think people and people that I know personally are being diagnosed who do not have anything that could be classed as disabling and yet this group are being allowed to be the most vocal because they can be and I would even go so far as to say some out making it their personality (runs for cover).

“You cannot quantify LD in the same way you can with say, Down Syndrome, where social skills are typically good and a child will engage with assessment. As others have said, children with Autism often display remarkable skill in niche areas. They aren’t learning in the way expected because they don’t have the joint attention / social imagination and communication skills to learn in the way the system demands.”

I rewrote it for you. Not that I agree with describing children with Downs Syndrome as a homogenised stereotype of smiley cuddly children.

You cannot quantify LD in the same way you can with say, Down Syndrome, where social skills are typical and facilitate engagement with the assessment process. As others have said, autistic children can display remarkable skill in some areas with much lower levels in others. They aren’t learning in the way expected because the system fails to engage autistic minds because it is designed for typical joint attention / social imagination and communication skills.

People need to have some words available to them to explain what presentation the person thier caring for has occasionally.

Do I think my son has been profoundly affected by his autism. Yes 100%. Hes in a special school with 1 to 2 support, missed achool for a year, has self injurious behavior, he wont do gcses etc. Do I think it meets the suggested criteria for profound autism and would i use that term. No. He has an iq over 70. He is verbal. He uses a toilet. I dont think it comes from a place of gatekeeping or dismissiveness. It's desperate people trying to explain.

I dont think its perfect. I think categories are very complicated. But its very telling that there are certain presentations of autism that have given up using that word alone to explain thier child.

People would be happier I think with qualifying words that didnt indicate severity or needs but profiles. If blue autism meant a sensory seeking, non verbal teen with protective head gear reliably turned up, and orange autism meant you fairly consistently got a highly anxious, rule abiding person who masks and gets exhausted in social situation and avoided noise. We'd all argue less. But its never that easy.

Maybe people should try understand whats attempting to be conveyed imperfectly.

Getting into severity contests doesnt help anyone really.

If you do a study on a large enough group of people who are proportionally representative of the population (e.g. half male, half female, similar percentage wise spread of ages as the population, spread of socio-economic status, etc) you can effectively generalise the results to the whole population. IIRC the number is about 2000-3000. Smaller sample sizes than this, even if they are representative (right ratios of everything above) are not generalisable to a wider population. But studying a sample of a couple of thousand is much more realistic than trying to sample every single person in a country or the world.

So if you studied 3,000 randomly chosen people in this way and specifically looked at whether they meet criteria for ADHD, then you get a fairly reliable estimate of how many people in the general population meet criteria for ADHD, and various studies have been done on this and they get numbers between about 3-5%.

I believe that's the number used in this NHS figure which says about 2,500,000 people in the UK are estimated to have ADHD which includes those not currently diagnosed.

https://digital.nhs.uk/data-and-information/publications/statistical/mi-adhd/may-2025

You can then compare that with the number of people who actually have a diagnosis of ADHD on their NHS medical record, which is about 0.32% according to ADHD UK.

https://adhduk.co.uk/adhd-diagnosis-rate-uk/

It's really obvious that 0.3% (which would be about 210,000) is far less than the 2.5mil who are estimated to have ADHD, which would mean the condition is likely underdiagnosed.

The reason it probably doesn't feel underdiagnosed at the moment is because there's a backlog - if everyone was systematically and perfectly identified at the exact same age then you'd expect to see about 21,000 people (~3% of ~700,000 births since 1975) diagnosed per year, but because diagnosis rates per year have been much much lower than this historically (less than 10k per year until about 2016) and adult diagnosis was basically nonexistant until very recently, it's like a traffic light where 3 cars are approaching per minute, but the light only lets a couple of cars through every 10 minutes or so. You'd end up with a huge traffic jam behind the light, and if you took the light away, you'd see a constant stream of cars flooding through the junction at once, which would make it seem much busier than it really was.

More recognition scientifically led to adults getting diagnosed, which very slowly led to more awareness as adults who were diagnosed later in life started to speak out. That then leads to a bit of a snowball effect where people realise that actually, this sounds like me, so they seek assessment and demand goes up. More adults are diagnosed leading to even more awareness and even more demand, with a huge spike in 2020 thought to be related to the pandemic/ lockdowns. But these adults always existed, they just weren't identified as children, partly because ADHD wasn't even really recognised in children until the 90s and because children have historically been underdiagnosed too - this is much more in proportion now. So adults who turned 18 more than 10 years ago were unlikely to have been diagnosed as children, and adults who turned 18 more than 25 years ago were almost definitely not diagnosed as children because barely any children were. This is a lot of missed diagnoses. The "traffic jam" is huge with hundreds of thousands on waiting lists currently, and almost certainly the same amount or so currently unaware that over the next 5-10 years they will come across some information which makes them wonder if they might also have ADHD. In addition to the children and young people being identified in the normal course of their development.

The point still stands though as it does not rule out the fact that, at the worldwide level, something could potentially be overdiagnosed.

Thanks for sharing however- I shall check out these links.

Gosh, do you think that perhaps their social communication disability is in fact integral to their personality and that they are exactly the sort of people who will become consumed by a special interest?

I don’t even know where to start with “allowed to be.” This group which you find annoying due to their fixations and communication but absolutely are not disabled are also somehow lacking competency and should be controlled? By whom? But definitely not disabled no, just annoying.

Catch yourself on.

You’re putting words in my mouth now. Smiley cuddly children? Come on. It is at this point that I exit this thread as it seems no place for mature debate, too many people are getting riled up.

They are the most vocal because they are able to be but they don’t represent all with autism, far from it. That’s the whole point of this thread.

Looking through your comments OP, your child seems so different to other autistic people because he has other significant conditions that severely impair his functioning. Why are you so focused on the autism aspect?
Say for example someone has epilepsy and spina bifida, if the epilepsy is well controlled and they only have absence seizures rather than drop seizures and they only occur once every few years that wouldn't mean they need support for the epilepsy. However, the spina bifida could mean they are unable to mobilise and need a high level of support. Are people going to be focused on epilepsy and how some people with epilepsy can live a full life without support so we need to categorise epilepsy?

It’s not unpleasantness - perhaps you just don’t like me saying it. It’s simply not true about people with Autism not having high end job/relationships if you incorporate everyone who is now deemed to have “Autism” with no differentiation. Also getting through airports preferentially etc. People who are basically pretty functional can legitimately use the lanyard. It dilutes the point of it.

I think in time it will be

I work in mh as care coordinator and a number of professionals raise this concern (similar with ADHD)

it makes it very difficult when trying to access support for people

it needs to be recognised that people with ASD will often have their own individual struggles but sown manage the navigate through this and have successful relationships and careers but for some constant support is needed and impact of day to day living is severe

@TiredelfI’m not gate keeping - this is a discussion about appropriate categorisation.

Worldwide diagnosis levels are much lower than the UK which is not surprising considering some countries don't really recognise ADHD at all. So it's extremely unlikely ADHD is overdiagnosed on a worldwide level.

I suspect you mean it's overdiagnosed in the US? That's basically the only country where it's possible if you look at the data, which there is a lot of, so you can look at it in a lot of detail. But it's not as clear cut as the US is massively overdiagnosing ADHD either. They are just really ahead of the curve for whatever reason, so their rates are much higher than other places and always have been. There are some dodgy figures/estimates that come out of the US but the closer you look into them, they don't really stand up. However I do think it is possible that it could be overdiagnosed in the US specifically, I just don't know if it's as likely as some people assume. And if there is overdiagnosis, it is limited to children - adult diagnosis rates in the US are still much lower than population estimates. There are also theories that since the US is basically a nation built on immigration that it could genuinely have higher prevalence there because someone with ADHD is probably the person who is mad enough to jump on a boat and go and make a life in the "new world". (I have no idea how realistic this is as a theory!)

The rest of the world if you count places where ADHD is actually recognised (mostly Europe and English speaking countries) have had such miniscule diagnosis rates you can barely call them rates, they are more like a trickle right the way through the 90s/00s and even into the 10s really, although that was a more variable decade.

However other countries such as other European countries while they initially lagged behind the UK in recognising ADHD, have now overtaken. The UK seems to be extremely conservative about ADHD diagnosis on a worldwide scale when compared with similar countries.

See also wearing a sunflower lanyard to denote specialness and getting preferential treatment in queues and airports etc

How is this not gatekeeping? You suggest that someone who has a job shouldn't use a lanyard but it's fine for your kid to use one. Who are you to decide?

Why not just assume that if someone is wearing a sunflower lanyard, it's because they need one and mind your own business?

@Tiredelf Er no I haven’t suggested that Autistic people with jobs shouldn’t wear lanyards. Autism itself is a categorisation of a group or constellation of various characteristics in the first place. I’m just saying there should be better categorisation within the spectrum.

The diagnosed kids i know who dont fit even the more mild side of asd both have issues with spelling. So seems a cascade of diagnosis from when they are put in front of the system re dyslexia. Which incidentally can happen with asd/adhd too.
Reading an adhd group many of the parents are determined that kids showing pretty typical issues for adhd, sleep issues, arguing, impulse issues like hitting and throwing that the more severe kids must have something more than adhd.

ASD is only assessed based on parental reporting and the ados the school info doesnt mean much.

i think probably a limit of say age 30 on adult diagnosis to focus on child ones would make sense. As pp says life is generally harder for kids at home and school, they have no autonomy. They are forced to sit exams affecting their lives.
stuck in a room of 30+ people. With kids kicking their chairs or drawing on their desks. Opening their bags. Bored out of their heads. Doing subjects they have no interest in.