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.

I was late diagnosed ASD and ADHD in my 30s. I do think there should be a category for profound autism, but that would be for the non-verbal, needing constant support. Your DS is at university with some support. I did/do mask well but I would say I’m closer to your DS then some NT people, and your DS is probably closer to me then some (not all) people with profound autism. Just because you see a snapshot of my life, and I probably look pretty normal from a distance as I have a job, DH and DCs, but that doesn’t mean I don’t have support needs. I would have been diagnosed as a child if I were a child now, but in the 90s it was unusual for girls to be thought of as autistic. I was the child who sat and did maths and science workbooks rather than join in with others, and often in the playground by myself or trying to play games but being laughed at. I was bullied throughout school, school refused from age 10, self harmed from age 12 and suicide attempts, sexually abused. Abused at home as my parents didn’t understand me and I was always ‘naughty’.didn’t do homework or engage much in lessons but got As so no concern was raised, as long as I got the grade it was seen as fine. I really needed support but didn’t get any. I relied on my housemates at uni, and now my DH. In the brief spell I lived alone it didn’t go well, I can’t keep a house organized and clean, can’t organise bills and can’t manage my money. I avoid public transport wherever possible as I can’t cope with it, I wouldn’t be able to get regular buses. I had to mask to survive, there was no support and no understanding and I became very good at it. I would be classed as high functioning but I still struggle with lots of life.

I think you may be talking at cross purposes here. Many people did not mask growing up. But because they were girls were told it was not possible they could be autistic. Which is one reason for many late diagnoses.

There are of course a range of needs. Someone can still need help with intimate care and toileting, but be able to pass academic exams.

I completely agree that there needs to be variation within the diagnoses - I was diagnosed autistic 15 years ago, and told that my diagnosis would have been Asperger’s were they still using that. I think it’s completely unhelpful to lump me in (married, holding down a job), with people with much more severe impairment who cannot communicate etc. I have social impairments, I’m not able to hold down friendships and have struggled at work, but to claim that my difficulties are the same as someone with severe autism, or the favourite phrase ‘it just means you experience my autism differently, not that I’m not as much impaired’ is just so much bullshit! Of course it has affected my life, otherwise I wouldn’t have had a diagnosis, but to claim it’s at exactly the same level as someone who is non verbal and can’t live independently does us both a disservice,

I want to understand why ASD is proliferating

1 is is better diagnosis
2 Is it viruses
3 Sugar / carbs
4 Alcohol
5 Age of parents and damages gametes?
6 More stress whilst baby prepartum

i don’t care about what support people get or don’t get. I want to get to understand and frankly my own feeling is that ASD is genetic but it’s worsened by external triggers or factors.

My dad was definitely aspergic but really successful in life. I just feel that things were worsened for my son due to the CMV virus. Perhaps we should inoculate mums for that as they are having kids older and losing their immunity.

I think for those for whom the ASD that comes out later in life they have the genetic disposition aggravated by emotional turmoil of ‘masking’ like a form of PTSd - more a psych impact on a generic disposition as opposed to a viral impact on a genetic disposition .

Who is claiming it’s the same? It’s called autism spectrum disorder, because it’s a spectrum.

There are scientists that could surely draw up a spread sheet eg language motor issues learning issues etc etc and see to really find out what factors are in common.

Why are we all not being questioned to find out what happened/ what could have been prevented?

I just want to understand how we can stop this because seeing my son and how life is for him I want a cure.

I don’t think it comes out later in life for anyone. Part of the diagnosis criteria is significant impact in childhood, so if traits that caused difficulties weren’t present in childhood they wouldn’t get a diagnosis. People are getting late diagnosis now because the understanding, especially for girls, wasn’t there in the 90s and before that.

The chronically online self-diagnosed “autistics” don’t want a cure to be found

Is this research something along the lines of what you mean OP?
https://www.princeton.edu/news/2025/07/09/major-autism-study-uncovers-biologically-distinct-subtypes-paving-way-precision

It's the nature of the condition that it affects people in different ways, especially in terms of how they appear to outsiders. I have friends and family with ASD children, and to the outside world their symptoms vary from extreme learning disabilities to nothing at all -but they are all very much in evidence to those who care for them.

I think more people are accepting that tbe dx needs to be split; the introduction of profound autism is the start of that. It's already beimg widely used.

Autism is an umbrella dx, so lots of dx grouped together for ease. It's the high functioning/ masking/ low care needs/ level ones (choose whatever descriptor you want) who don't want the dx split. Many worry that their dx/ needs won't be taken seriously, will be seen as lesser or not get the support they need.

There are those who argue those with high needs/ low functioning/ severe/ profound etc autism have a seperate learning disability but the reality is that the persons presentation means that what is ld and what is the impact of their autism can't be separated, they have high needs all the time, every day. They would also argue that any mental health needs of those who are high functioning etc can't be separated out even though they think ld can. Some argue that high/ severe mh needs with an autism dx equals high autism needs/ severe autism.

I don't believe those who were given a dx of classical/ kanners autism back in the day should have to now get a ld dx so that their presentation is described appropriatley. There are people who have ld without autism in the same way that there are people who have mh without autism.

It's a really toxic conversation.

These are generalisations ofcourse but usually how the conversation goes. It is a very emotive subject.

Personally i want the distinction. I think we need more language and more conversations about the differences and descriptions. Hopefully more research will follow and we will understand the causes and how to prevent (severe/ profound) or even better reverse or cure (why wouldn't you want to cure a severe disability?).

I'm also not a big fan of the "different not disabled" or "autism is a superpower". It's a disability.

I'll add a pic of how the dsm has changed but may take a min to be ok'd by mn to illustrate how the dx and what is inc can change.

Think for those for whom the ASD that comes out later in life they have the genetic disposition aggravated by emotional turmoil of ‘masking’ like a form of PTSd - more a psych impact on a generic disposition as opposed to a viral impact on a genetic disposition

That's a really interesting comment, OP. I have long thought that I've had various issues from a young age, but somehow they didn't feel as bad as they do now. Maybe I had better capacity to deal with them or mask, but I really think they have also become worse. It is true to say I think that age, trauma, grief and stress have significantly exacerbated my various symptoms in my adult life and since then, things haven't "got better" even with the lessening of stress and working through trauma.

It's also a interesting theory regarding genetic cause + trigger impact of an illness/virus.

Severe Learning Disability is a diagnosis. May be with or without co occurring conditions. Definitely leads to higher level of pervasive support needs than autism without a learning disability. Autism without LD increases suicide risk by 9x that of NT individuals. Being dead is very impairing. In terms of care needs these can fluctuate and mental health trajectory can be a big part of that. That said caring for a child with severe LD is incredibly difficult and woefully lacking in resource. That is not up for debate.

I think so

Also I don’t understand why we are not screaming out for a cure. If someone has a disease they want someone trying to cure it.

Can for instance viral damage to the nervous system be reversed?

I agree OP. My DD has a diagnosis of ASD, is in a special school, needs personal care, has cognitive deficit, no friends, doesn’t socialise at all and it’s unlikely she’ll live independently. However, she’s not as severe as a non verbal child with ASD, who has violent meltdowns. On the other end of the spectrum though she is much more severe than a child who can access a mainstream education - even if that child masks all day and is then unable to do anything else that day, debilitating as this is itself though. All three presentations are valid, though I do feel some kind of categorisation would help. Eg DD was in a class with non verbal children for six months, due to her cognitive issues, which she couldn’t cope with, this caused her to meltdown/run away frequently - thus pulling staff away from these other children who needed higher input - all because the school is ASD centred and not specific…

That sounds rough

Actually this isn't true. Autism is genetic but the combination of gene variation which causes autism is itself varied - one person's autism can be tied to single gene disorders and another's might currently be categorised as idiopathic (but it's becoming widely understood that a wide range of common gene varients in specific combinations add up to cause autism).

Hopefully understanding will increase, but quite a lot of individuals with what-we're-not-allowed-to-call profound autism have one of the single gene disorders.

The spikey profiles apply to people who have learning disabilities with autism too - sometimes processing speed and massive language processing delays (which are part of the individual's autism) arguably more disabling than stans in the dark at IQ (notoriously unreliable to measure IQ in a non verbal or functionally non verbal individual not interested in interactions using AC, nor generally in cooperating with testing)..

Edited for spelling

I'm reading the four groups now and I like them.

It effectively creates a square with four quadrants: developmental issues yes/no and co-occurring conditions yes/no.

I would be in a no-no category, and welcome it as a way to be able to communicate my issues without having to explain I'm very aware it isn't anyhow comparable with struggles yes-yes people face.

I understand that there might be a risk that this category just won't get the support needed (even if it is shortsighted, as this group would be generally the cheapest to keep self-sufficient and at school/job), but I'm not convinced that current/case by case system is doing better.

I think an underestimated element of this debate, as Noras has picked up on, is the idea of a cure.

Now, in my case I don't think a cure or anything preventative was ever truly on the table. Pretty much my whole family fit the diagnostic criteria for ASD, so the argument for a hereditary and genetic cause is pretty solid for us. I have mostly "high" functioning family members with a few "low" functioning relatives as well, and I am in the grey in-between the two. While I'm sure environmental factors and epigenetics are key to how autism presents in each of us, the cause seems obvious and unavoidable if people in my family want to keep having children; I can't imagine there being a cure for something so ingrained and with such a complex origin. If there was one gene that could be changed, I would see potential, but nobody has found such a gene and I find it unlikely.

That said, I know other autistic people who are the only one in their family. Their families often seem much more determined to find such a cure than my own, and that includes some of the autistic people themselves. Some believe it to have been caused by vaccine injury, others link it to pre-term illnesses, others to environmental factors. I can't guess as to what caused their autism better than anyone else can, so I can't say whether they're right or wrong. My best guess is that genetic susceptibility might have been triggered by some other factor, but that's conjecture.

Either way I don't think a "cure" is ever going to be possible, as "curing" a structural neurological condition is unlikely. Not when someone already has it, even as a very young child, though treatments and quality of life are likely to improve over time with new understanding and technology. A cure is even less likely in hereditary cases, where such changes have likely been present in our genes since conception and before, as sperm and egg. That said, I don't think prevention is impossible, for those seemingly out-of-the-blue cases previously mentioned where an environmental factor could plausibly be specified. Or those where a single causative gene has been identified. I just imagine it going down the route of Down's syndrome testing as opposed to curative treatment, I suppose, and of course all the ethical thorns that come with it.

I'm sorry for rambling, but I struggle to cut down and even more so when I'm ill and not at my best. I hope I still explained my thoughts reasonably well.

Sorry am I missing something I thought it was ASD Level 1, 2 or 3. Is that only an Aus thing?

It is, but I do see other parents who have it rougher and thank god we’re not in that position. Like your Son, my DD is terrified of the outside world. It scares me, I’m a single Mum with Dad contributing four hours a fortnight, what will happen when I’m not here. My elder DS already talks about his future having incorporated caring for his Sister into it already. He’s 16 😢

I feel that everyone is rushing to get diagnosed ( understandably)

Maybe it might help one day as for those who get diagnosed later in life - if their grandkid has more profound ASD but the mum ( their child) caught a virus or had some issues during the gestation period that might confirm theories.

Perhaps those with this genetic disposition should be identified/ screened and more carefully looked after during pregnancy eg offered the CMV and other jabs etc or told to avoid people with flu / painkillers unless to control temperature and definitely zero alcohol.

I also wonder if something about 21st century living is aggravating things eg air quality/ pollutant/ more virus spread eg like cold sores etc

The Gov wants to review ASD as if to suggests it’s not real in all cases. I think it’s very real but not enough is being done to understand why and why is manifests so differently.

Unless we get to grips with what is happening it will get worse with more incidents. By carefully categorising eg those with physical symptoms and those without or those with language disorder etc and then questioning all parents we surely can understand more.

My DD has said she does not want to be involved in the care ( day to day ). I don’t blame her and told her to move far away as possible.

Separately from my thoughts about the concept of a cure, I am interested to see where the Princeton/Simons study goes and what it leads to in future. As it currently stands I don't fit any of the four groups proposed, but I expect more will be added and characteristics will be changed. As it stands, though, I fear it would be the same as when I was diagnosed with Asperger's- I have primarily social and behavioural challenges and at first glance that would be the best fit, but it doesn't account for my need for near constant support, self-injuring meltdowns and more disabling symptoms I experience. I'd love it if there was a category someday that truly suited me, because so far nothing more specific than "autism spectrum disorder" ever truly has.