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 don't think it should be subcategorised but there should be additional diagnoses.

My DD is AuDHD, PDA, dyspraxic. She has had an EHCP and 1:1 since she was 5 because school is very challenging for her. But if you met her on a good day, she comes across as bright, funny, sociable on the surface and it's possible she could go university etc. It's a very different scenario to a child that also has severe developmental delays, but she also isn't "high functioning".

@ChaosIsTwix i am an autism neuroscience researcher. We don’t know that the same brain systems are affected in different people with autism. In fact, the newest brain and genetic research suggests there may be many different subtypes. But the people who have autism plus learning disability often can’t take part in brain imaging research so we just don’t know.

from a research point of view, some kind of subtypes would be a useful tool to get a better understanding of how different people need different types of support. But much of the autism community seems to be against this and the researchers want to listen to the community.

Yanbu at all. My child is somewhere in the middle, able to speak, wash, toilet, school etc but is like a 10 year old (is adult), does not have the self awareness to self diagnose anxiety and won't be getting a PhD, marriage or even job anytime soon..

That seems more like my son

The issue for him are the complexities eg with the motor / language and then weird stuff like the bowl issues. All these things together added to the ASD just make things challenging.

So saying my friend has a son with really severe ASD and it’s another World again. He was 2:1 at school and an escape artist. He only says the occasional word. But I class that in my head as severe.

I’m guessing that some people with ASD would be upset to have their capacity queried. This illustrates maybe the difference in needs.

I don't know if it's only about being upset. I think if you try to lump autistic people into a category of either needing lifelong support or able to be fully independent, with no in between, there is a danger that the lifelong support category would lose the right to do things like attend university, which seems wrong, and even if your son would be totally unaware of this decision being made over his head, it still seems wrong to me to deny it to him when he is capable of managing it with support.

That is the kind of thing people tend to mean, I think, when they say functioning labels rob "low functioning" people of capacity or agency.

Nobody is out there trying to get EHCPs they dont need. Don't fall for the bullshit propaganda. Nobody would put themselves through the EHCP process unless it was absolutely necessary and even then the vast, vast majority get turned down as a matter of course leaving children who desperately need help, with nothing.

Why is it always parents of other disabled children who are so keen to try and decide which other children are "as worthy" of support as their kid? If they don't present the exact same, they decry that they aren't as deserving as their own child. Like they think their kid is the only way a disabled person can present in their own narrow worldview.

The problem is that there isn't enough support to go around due to lack of services and lack of funding. the problem is not not that other children (that you perceive as "less disabled" than your kid) also need support.

Let's stop being ableist towards other disabled people, shall we? We get enough of that from the neurotypicals.

I have what I always knew as Asperger's until I was in my 20 when they seemed to push hard on scrapping the label. I experience various issues I won't list but fundamentally I have two degrees, hold down a full-time job (even if office days wipe me out) and have had serious romantic relationships. This is not the same as someone who can't talk or use the toilet and it would be insulting to claim it is.

I do understand the concept of a spectrum, and I've met people who are of above average intelligence but are affected far more severely than I am, where I can see "yes, this is the same thing as I have, just more acute", but the two far ends of the spectrum are worlds apart, I think.

The issue is a lot of people are very anti the Asperger's label, because Mr Asperger had some very awful views, and because higher functioning people (especially online) feel that they do have real support needs that are being overlooked. This is why you get the big arguments online between higher functioning adults, and parents of children who quite literally cannot speak for themselves.

Everyone knows what I mean if I say I have Asperger's. At this point I'd rather we all went back to saying that and leaving "autism" to describe the other end of the spectrum.

The former Aspergers diagnosis and Autism don’t belong together. You have people with profound support needs mixed with people who are defending against discrimination. Neither group can properly advocate for itself.

The group that is better integrated into mainstream society is able to speak the loudest and make the most headway. Some have argued that grouping allows the effective speakers to be advocates for all. That simply isn’t the case. We have no experience with high support needs autism and our lives are too different.

Splitting the groups would give people and families with high support needs a clear platform. They would not have to deal with people diluting their messaging.

My group would be free to advocate for accepting ND in society without having to caveat that some people will simply never be able to live independently no matter how welcoming the world.

I'm interested in why the autism community would be against this? I think it would be helpful to all people struggling to have their particular challenges validated. Right now for example, i feel invisible, not validated and unheard. And someone caring for someone who is non-verbal and can't lead an independent life would feel resentful towards someone like me, leading a seemingly normal life, claiming to have the same diagnosis.

That where we sit I think similar to that

We were going to look at supported living. So for now talks with social services and the sw said why not look at it etc.

it’s certainly not the same as my friend’s boy who can only say a word or two and was on ABA training. I think ‘Oh myGod that’s tough’

Equally it’s different to someone else’s daugher who went to a different city to study and now lives as a graduate in another city and works etc.

There was an interesting study published in the US earlier this year which tried to redefine some boundaries and definitions. It’s worth a read:

https://www.princeton.edu/news/2025/07/09/major-autism-study-uncovers-biologically-distinct-subtypes-paving-way-precision

This is fascinating, thank you (I'm being genuine). I also have ADHD so sometimes mix up the info I've read about both. So is there not an overarching cause or similarities in what's causing the disconnect from neurotypicals? A type of different brain function which is the same for all autistic individuals? I believe there are some differences in ADHD which, for example, mean messages (neurons?) fire similarly for all people with ADHD.
Sorry, slightly detailing thread.

I agree. My 16 year old son has level 2 autism and seems to fall between 2 groups.

He definitely in a different place to someone who is non-verbal or needs constant care but at the same time he is much more strongly impacted than those i know of with level 1.

My sister and brother, both in their 40s, got recent ADHD diagnosis and i feel a bit like it is claiming ‘disabled’ status. They both did well in school, had plenty of friends, went to university, got good jobs, have houses and families and still doing well. I kind of feel like if it didn’t really impact your life then its not an issue really.

Can you tell me because I am not sure I have got it right. I thought it was hard to actually find subtypes which stick because with the research/approaches we've had so far, where this has been tried (e.g. the older diagnoses of Aspergers vs Autism or PDD-NOS, the US "Support Levels") but then when it's actually checked out in the field, it's all found to be completely subjective and the way people are divided into subtypes are not able to be replicated, which is why it's been all pushed together again as at least the idea that "all of this is linked" is more replicable, even if it's too vague to be very useful.

I don't know if I do follow the idea that research is "following the community" because it seems to me that it ought to be something more objective. I do think that separating out into subtypes by IQ level or verbal ability or even support needs is all a bit of a red herring and these things perhaps follow what we see externally as "two extremes" of the autistic community but in reality it would make sense (to me) to take more of a data driven view and look for patterns ie what actually goes together. I don't know that external observation is the best tool - that seems to have caused a lot of misunderstanding about ADHD for example, though I do get that you have to start somewhere.

Incidentally I was interested in the recent study which seemed to come up with four subtypes but I struggled to recognise them and it seemed most people did, but maybe that's more about the way that autism tends to be talked about and perceived online, which is very heavily skewed towards autistic people who are able to access computers, the internet, typing because they are the ones having the discussions. Do you know was this study particularly groundbreaking, or is it one of many which don't get picked up by the press?

I am not diagnosed autistic, but do have ADHD. I see a lot of overlap between autism and ADHD and other neurodivergent conditions and wonder if these links will be better understood in the future.

My issue is that I worry we struggle to understand things fully if we lump it all together and we will never find a cure

I had the CMV virus when my son was born. He had a VEP showing latency and some white matter damage. He had fits lasting for over an hour as a small child and had loads of allergies etc and even cellulitis needing to go to hospital. We were repeat flyers.

As a result of his resulting hypotonia he has really bad glue ear and repeat gromets etc

I strongly believe that his issues were the virus aggravated a genetic predisposition to ASD and made it worse due to the hypotonia causing sensory issues / perception issues and poor hearing creating the language issues aggravating what should have been mild ASD and that also caused the spiky profile as some areas of the brain were damaged by the virus

So I just feel that my not defining more we we’ll never understand the cause and stop all this

The online/vocal autism community can be utterly toxic. I once saw someone who was studying at a top-tier university scold another person for referring to their relative as non-verbal, because this person had decided for essentially ideological reasons that nobody could truly be non-verbal - instead they thought that families were ignoring their loved ones' attempts to communicate.

I suspect the elephant in the room is people with the diagnosis formerly known as Asperger's can be very rigid and very strident (I certainly can be!) This is also a very emotive topic so it brings out some exceptionally strong views.

I agree - in fact my ‘high functioning’ autistic teenage daughter and I were discussing it the other day. She absolutely has her difficulties and her autism impacts her significantly- but she will definitely live independently, has many strengths where she excels beyond average and is able to attend mainstream school without an EHCP (but with support). She and I don’t see how her diagnosis can be the same as those impacted much more severely. She certainly is autistic but feel there should be more levels or names to open up more appropriate support for all.

I hear you op, and remember the dc who make your ds seem very independent eg the ones who have no speech, very violent and need 2:1 care. There was a lady early talking about wanting social services to step in because her ds was stronger than her

Ah yes that was the study I meant, above.

Although re-reading it the subcategories DO make sense so I am less sure why I thought they didn't 😅 <Joins @ChaosIsTwix on the confused ADHDers bench>

I should go to bed, but will come back in the morning.

To me I strongly believe that the impact of viruses on the neural system need to be examined but this is going to be ignored if the focus is on all ASD and I think fhaf some are aggravated by external factors such as as mothers health prepartum

We need to be doing more hard data analysis

Working with children with severe autism who self harm, smear faeces on the walls, lash out, run away, are non verbal, and bring their parents to their absolute knees… I think the diagnoses should be autistic or Asperger’s. If you are living your life independently, hold down a job, and are one of these people who need a diagnosis aged 50- you can have the Asperger’s label.

I don’t care what anyone thinks of this. The dilution of the diagnostic term “autism” is a disgrace. Society falls over itself to consume media with quirky autistic savant characters. When they see a genuinely severely autistic person in public they recoil.

I am the (high functioning) ND mum of a (high functioning) ND child. I have a PhD, a well paid job, happy marriage and a very happy and “normal” life, despite there having been challenges along the way due to my AuDHD. It’s absolute madness to me that people use the same terms to describe me and someone non-verbal with really severe challenges.

Yes, neurodivergence can be difficult for everyone but we need to be able to talk about the differences. It’s the same as physical disability- we can understand that someone with a very mild physical disability and someone who is tetraplegic both experience challenges that someone fully able-bodied does not experience. It doesn’t follow that the challenges are the same or that we have to treat those people the same and describe them in the same terms.

I am hoping to know what caused it one day and be told there is a cure

I totally agree. I keep reading about people with “severe autism” as a way of differentiating. I think it must be really hard for people with your son’s level of need to be grouped with what is now defined as autism. To be fair, some of the people responsible for the changes to the diagnosis now acknowledge it was a mistake.

Genuine question - is it even the same issue for all if it presents so very differently?

I understand there are diagnostic criteria, but they have evolved over the years. And they clearly aren't rigid, they are broad.

I don't deny anyone's issues and suffering, I often recognise ND treats and masking in myself and I can see I meet many criteria for what was previously called high-functioning autism. My father is certainly a more severe example than me. But then neither of us are anywhere near non-verbal autistic people who truly need daily support. We could, however, benefit from MH support and in hindsight I wish this had been available from early on to me. It is very different to severe autism affecting the fundamental ability to live independently.