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.

No I’m not. It’s all needs lead however it works better with more info. Efficacy is more likely with more info and adjustments made from that info. Diagnosis brings additional info.

It risk a diagnosis being invalidated, not by the individual, or their family- but by the general population. As outlined earlier in the thread by several, this is already beginning to creep into schools where I hear comments like “oh he has autism now, how many labels can a child have?” “Or he has autism but it’s a private diagnosis, if you see enough people you’ll get a diagnosis eventually”

I don’t understand what you mean by “taking away an element of control”.

I totally get that ASD is not a black and white diagnosis and where you draw the line is (rightly) open to discussion. However I really struggle to understand the supposed downsides of diagnosis - as DS and I are both on “mild” side of ND (so would probably not be diagnosed if criteria were markedly tightened), and it as been HUGELY positive for us because of the understanding it has given us. If we hadn’t had DS assessed we’d still be in the dark about his needs and how to meet them.

Agree - as a parent of a diagnosed younger child. Mine DD is ‘highly functioning’ and may go on to live independently. Our experience of daily life is a world away from other families who have non-verbal children requiring intense ongoing care. Whilst that doesn’t diminish my DD’s struggle with the day to day she lives in, the financial, social, emotion toll is completely different.

Exactly this!

It doesn’t.

My dc get their various treatments because of high need. Somebody who didn’t need the treatments my dc need with a diagnosis they allegedly shouldn’t have aren’t going to impact my dc at all because they will have no need for said treatments and will not be accessing them. If they were they need them, the bar is high.

I work in education. Schools don’t say that, most are suggesting the need for diagnosis and supporting parents to get a diagnosis. Many parents whose child need diagnosis actually don’t want one and need to be encouraged.Diagnosis pre screening weeds many out. Then you actually have to get through the diagnosis process after a very long wait on the nhs. With the cost of living crisis most can’t afford private and there is screening for that too which schools play a part in.

Having thought about it I don’t begrudge people getting diagnosis as long as this is data that could be mined and people are wholly honest ( which 99.9 % of people are)

The NHS must have a huge data bank on ASD. If there was money they should send out questionnaires to as many people’s as possible eg did the person have flu whilst pregnant or did try take vitamins etc. Did they have a particularly stressful time. Surely we need a greater understanding of this.

i just feel that we accept it and never question it. Is there prevalence now because some people would be dead in the 19th century but survived to have kids? I accept that some people would have been thought of as the ‘witch’ or odd person in the village but are numbers increasing and if so, what are we doing wrong?

This is the 21 century and really at some point we need to isolate this more and work out what is happening be it for those living without intense support or those needing quite a lot of support ASD.

Only be differentiating and getting data on the different types of issues will we see a pattern because I think that the causes differ. Look I know I had the CMV virus when my DS was one month old and the likelihood is that is was there pre partum. He had mocroencephally so there is a clue. Masking does not come into that but what if points to is a possible viral cause.

I suspect the following

Hypotonia - leading to poor perception and lack of proper feed back to the brain

Virus or bacteria damaging neural pathways

Glue ear damaging auditory feed back to the brain and the development of neural pathways

For others

Extreme emotional stress aggravating pre existing ASD gene acting as a trigger

Social isolation aggravating a pre disposition and making it worse

The worry is that in 30 years time we won’t be able to afford social services or much health care - our country is in decline and wealth will be taken from the middle classes and slightly wealthier and concentrated in the hands of those peoples at the top. At present we take for granted that the State will support our future grandchildren but I am not banking on that.

if one thing comes out of any enquiry into ND is should be what is the cause and how to lessen it.

Perhaps that's because we are only scratching the surface on how many autistic people there actually are. How many studies have there been done on the subject of "over diagnosis" of, say, autistic women? Considering until very very recently, they were hardly diagnosed at all? What if it's not actually "over diagnosis" ... What if this is just how many autistic people there have always been?

Re outcomes- what if the outcome of the diagnosis is the person being able to better understand themselves and therefore be happier. Would that be an acceptable outcome to you? Is there a reason why people should be denied having a reason why they struggle with things other people take for granted?

Are you questioning what I’ve heard in schools? I’m giving you direct quotes of what I’ve heard school staff say. Private diagnosis is a big thing over here and many assessments are ferried out to private services due to system overwhelm.

Yes, this happens a lot more than people would like to think.

But just because they work in a school and are "professionals" in regards to teaching children, doesn't mean they can't be blissfully ignorant regarding neurodivergence.

People being ableist doesnt mean that child doesn't have autism and was wrongly diagnosed. It means the school staff are ableist pricks and that does unfortunately tie in with my own child's experiences in school, where he was unfortunate enough to encounter many staff who thought their opinion alone should be enough to invalidate a child. This caused him lasting trauma and those people shouldn't be anywhere near a child.

I think you've just lost a lot of credibility there if you think that school staff being ableist is a good reason to deny children support and a diagnosis they're entitled to if they're neurodivergent.

The real problem there of course is that there are many, many people working in schools who urgently require an empathy bypass, along with the ability to think further than the end of their own nose, and a decent training programme for all teachers and school staff on neurodiversity.

Our “Ofsted Outstanding” infant school was absolutely horrendous with my DS and our attempts to get his autism diagnosis. He was born extremely prematurely and has multiple disabilities as a result. The headteacher met him several months before he started school and recommended that we apply for an EHCP, which we did successfully, and DS was awarded full-time 1:1 support. His INA was absolutely wonderful. His paediatrician strongly suspected autism and gave us the questionnaires for the school to fill in. I don’t know how many times we provided them, but the senco “lost them”, claimed we hadn’t provided them in the first place, asked us “what is it you want with all of these labels?” (!!) and eventually completed the forms stating that he showed no signs of autism at all. His class teacher - who subsequently became senco - accused me of lying and paranoia. This was a little boy who already had full-time 1:1 support but wasn’t coping - in fact he was sinking mentally as well as academically.

We moved schools. The autism diagnosis was formalised. He moved to a special school. He’ll never live independently or have a career. Sometimes I feel like taking him back to the infant school and reintroducing him and showing them everything they refused to see. We didn’t want labels and I wasn’t paranoid or lying. So, for all I know, there may be children whose parents are queueing up for diagnoses of autism and getting them easily - but that certainly wasn’t our experience.

I just feel there is a growing skepticism among school staff with regard to diagnosis in general and this worries me. I am a peripatetic professional who visits multiple schools weekly and it’s a growing pattern in recent years. Wouldn’t that concern you?

At this point we need as much hard data as possible

Someone who has what others considered milder ASD I think could have grandchildren with significant impairment - and that would be a clue of something.

At present it’s as if no one is working hard enough to stop this happening. We just seem to accept trotting away with the diagnosis and thinking ok then.

I think we should say ‘Great but why my DS or DD’ There should be far more generic testing. Even if someone just said ‘look when you are pregnant just be careful and work more from home and wear a mask plus here are some antivirals’ You have a genetic disposition to ASD in your family etc etc

Instead it’s well there you go ….

Why are some not able to talk and some can won the Nobel prize for Science?

If the Gov want to do an enquiry start with how much detailed data do we have on people with ND and take it from there. Unless we gather more data we won’t solve this. That’s why we need to get hard data and categorise into sub sections.

Also for instance my son was written off for expressive language as he was on the 1 percentile etc. As they wrote out his direct language therapy as he was language disordered I paid for drama lessons starting with P level poems at aged 10. We worked really hard on Drama and he learnt to talk. He still stutters and has false starts but he has a huge vocabulary. The huge vocal overcomes his working memory or word finding issues. That’s useful information eg use Drama and give the ones who struggle with language ( but not the non verbals who are really severe) lines to learn/ scaffold their speech.

I work in an autism unit within an intellectual disabilities setting - the meltdowns and distress people with very profound and complex disabilities around their autism experience does not remotely fit your description.
Ultimately we are a last chance setting before the very undesirable outcome of a specialist clised psychiatric unit, and if some of our young adult men had capacity they would be in jail, to be blunt.
We do absolutely everything to design an environment around our clients' needs and preferences, but sometimes despite every functional behaviour analysis and multidisciplinary team meeting we can't keep our clients on an even keel - slow processing speed can mean a meltdown at 11am apparently utterly out of the blue, going from calmly walking a favourite route to attacking staff and fellow group members and themselves, ripping off their clothes and being sedated or restrained out of necessity, can be the result of processing something misunderstood in the residential group at breakfast time, or of stumbling slightly and not understanding what happened, or of the internal working of their bodies - digestive or otherwise.

One of my bugbears really is being told that people with intellectual disabilities plus autism are automatically happy, where in fact in some cases no matter what carers or their family do they are often terrified, enraged and completely overwhelmed multiple times per day by the things nobody can plan for - including the actions of their peers with similar diagnoses and by their own bodies.

This is an example of the categorisation of genetics and 'types' research seem to be looking at www.princeton.edu/news/2025/07/09/major-autism-study-uncovers-biologically-distinct-subtypes-paving-way-precision

I think the number of gross comments being made by ableist school staff should be worrying you. Do you challenge these comments when you hear them? Or do you nod along in commiseration about his terrible all this unnecessary "overdiagnosis" is?

I voted YABU, but don't think you are being completely U as I think it is difficult.

DS is autistic, if you met him and he was doing well and asked to mask well you might not notice, and he has been described as high functioning.

Unfortunately he's very rarely doing well at the moment.

He's very bright and academically able, very talkative, but has massive social issues with peers and has barely attended school for a year now. He was self harming over the summer and spent the first six months of 2025 talking about wanting to die and is crippled with anxiety. He pretty much won't do anything unless it's part of a special interest.

He's rapidly approaching 13 years old and has no social life outside of a couple people he plays video games with and that's all online. He won't bathe or change his clothes (and he chews his clothes so he looks like he's wearing rags), can't cope with going into town unless it's to do something specific that he's interested in doing, and even then will usually struggle. He does nothing without us or occasionally his grandparents.

Are you arguing that other people’s crappy attitudes are a reason for people not to be diagnosed?

We’re going through a bit of a culture shift at the moment due to the rapid increase in diagnosis (which I’d put down to historic underdiagnosis) but I think we will come out in a better place with broader understanding.

Ironically I think people who work in this space can be the most blinkered - someone I know works with autistic children with high support needs - her own son has just been diagnosed at secondary school age, it took her a long time to recognise it because his presentation is so different from the children she’s used to working with.

From my point of view, there are more diagnoses nowadays because there is more awareness how ASD presents and more conditions fall under the ASD umbrella now like Aspergers.

I'm for instance convinced that my father, who is 70, has ASD and also my brother, who is 40.

But back in the 90s children like my brother didn't get diagnosed with ASD (I would like to point out that I grew up in another European country, but things are very similar to the UK).

He was sent to a specialist language school to help with his stuttering, but his very strong social communication challenges and sensory issues that he still has to do this day were completely overlooked.

The comments are typically made where it’s a child whose difficulties present more in the home environment. It’s not that they are ablest per se. Whilst I wouldn’t comment on overdiagnosis I do think the expansion of the category has contributed to this cynicism / jadedness. They don’t see autism as “a big deal” anymore unless there are evident needs to go along with the diagnosis. I suppose they are becoming more needs-led in that sense? It’s a huge problem, and a reason I prefer the previous iteration of the DSM categories- they are more informative.

population data science data banks are already doing this research

Huge bugbear of mine too. I’ve worked with several children recently with GDD and autism whose SIBs are so extreme as to be life threatening.

I’ve got an autistic incontinent Relative with co morbidities but he’s a genius doing algebra age 5