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.

learning delay is bunched under autism when it isn’t autism.

I would have thought learning delay with autism is a pretty accurate summary. In the same way autism with adhd or autism with severe CPTSD or autism with severe mental health struggles or autism with a whole host of health conditions etc are.

The autism traits are universal and there needs to be wider awareness of the difficulties they bring for all. The ignorance re autism illustrated just on MN alone is stark. Additional co morbidities make autism more complex

@Sutant0 confusing for people who think autism means someone like Dr Murphy in The Good Doctor and don't understand that some autistic people have severe impairments in daily functioning and need a lot of support.

I was diagnosed in England and given a level

Sire ok let’s have both but I really want to see more movement to find a cure and not make it a condition that is almost celebrated on social media

its a horrible condition in all its manifestations from high functioning suicidal type to someone needing support to remember to eat.

Why shouldn't people at both ends of the spectrum get the support and validation they deserve? Again, this is why we need categorisation.

My cousin is non verbal and moved from a special needs boarding school to 24 hour supported living and has remained that way for the next 35 years. His entire skill set is making a cup of tea.

It's called autistic SPECTRUM disorder for a reason, it is a continuum of different levels of disability.

OP using your logic i could argue that your son isn't worthy of the diagnosis in comparison to my cousin. But i won't because It isn't a competition for whose effected the worse.

How did you get diagnosed if you're basically OK? Genuine question as I thought to meet the diagnostic criteria it has to have an impairment on the person's life in different situations.

I think the medical profession here has perhaps neglected the role of communicating clearly to the public. For the doctors themselves, it might be fine to say "it's too complicated to draw lines, let's just call it all 'autism' and refer to the paperwork for further details for a given patient". But it may help the general public to have rough subcategories to refer to even if these aren't horribly scientifically robust. I definitely think it would be better to have some medically approved less formal terms for different sorts of autism rather than having to listen to people saying "he's a bit autistic" etc all the time.

Having ASD as a diagnosis is as wide and meaningless to most as saying ‘I have cancer’. It’s been broadened so much as to be completely unspecific and I do think this causes issues to general understanding and empathy for people on the spectrum. It becomes a ‘who is more disabled by it’ contest, rather than a nuanced social conversation about individual differences and how society, schools, employers etc can support the person in front of them.

It is useful for some people though having that catagorising even knowing it can be fluid, there’s always going to be people who agree or disagree though

I think some form of categorisation would be useful in a sense that it would be a shorthand way of explanation of the difficulties someone faces.

If you only say ‘my DS is autistic’ and they have never met your DS and are completely unaware of the difficulties that either you or you DS have faced they have absolutely no understanding of the level/type, call it what you will, of autism you are talking about.

I have no idea of what categorisation would look like be it based on needs, difficulties, presentation but just something that with more frequent use would become the shorthand I mentioned above for those people who don’t live in the SEND world day to day.

@CautiousLurker2 just seen your post now. Yes, the cancer analogy similar.

But it is going to be hugely inaccurate, a drain on resources when people need reassessing and will cause even more problems for parents trying to get help and support.

And @ApplebyArrows also missed your post as I was composing mine. Yes, ‘communicating to the public’ - a shorter version of what I was trying to say 😂

There aren’t different types of autism. You need to reach the threshold in 3 main traits and the make up can vary massively from person to person. Then there are comorbidities that aren’t autism.

I agree. My oldest child is autistic with severe leaning disabilities, non verbal, high level of aggression and self injuring, incontinent, will never live independently, needs 2:1 care. My youngest is also autistic, no learning disabilities, very verbal, clever, but rigid thinking, explosive temper, currently out of mainstream school but unable to find a special school for his abilities. I have every confidence he will live an independent life with a little support. They are worlds apart, how can it be the same condition with massively different manifestations? I am in favour of bringing back Asperger's, and using the term profound autism, potentially the whole classification needs rethinking. Please don't come at me about profound autism if you haven't experienced the horror it is, the PTSD, the ongoing trauma, the fear of the future. It's not comparable. Most people won't believe the things I have seen my child do, and the utter heartbreak of it.

I am a mother to a child with level 3 autism with global developmental delay. I was told not to Google what global developmental delay meant. It basically replaced the classification type “retardation” in an old DSM.

I was repeatedly told by multiple health and social professionals that autism is a social communication disorder.

Autism is not a social communication disorder at all. That is just one symptom and it doesn’t even apply to every autistic individual. Many autistic people experience physical symptoms of the disorder.

I think it’s a physiological condition that broadly impacts neurological processing (essentially a processing disorder - specifically how information is processed and expressed by the body).

When I was researching my child’s diagnosis I uncovered my very obvious autism. I don’t process the world around me in a normal way. I can hear electricity in the walls. Sounds are too loud. I can’t understand language, need to watch tv with subtitles and light makes me physically ill. I could hyperfocus at work or spend the entire day staring at my computer screen which I never switched on. There was no inbetween.

I’ve also recognised my own mother’s undiagnosed autism.

There was a study that came out of Princeton that found four autism subtypes, and these subtypes are linked to genetics.

https://www.psychologytoday.com/au/blog/shouldstorm/202508/new-genetic-study-reveals-4-autism-subtypes/amp

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

There’s also a new study from Yale researchers:

https://medicine.yale.edu/news-article/molecular-difference-in-autistic-brains/

I did everything to get through to my child. I don’t know if he will live any sort of normal life.

My pet peeve is people saying "he's a bit autistic" to refer to someone with lacking social skills. Why not say "he lacks social skills"? I don't have a bit of cancer because I have a birth mark.

Even worse is when people say "we're all a bit autistic". It's like saying to someone in a wheel chair that "we're all a bit disabled".🙄

I completely agree with you @Noras. My daughter is what I would refer to as mid functioning, she is verbal, never masks, in mainstream primary but working 3 to 4 years behind, she's out of the classroom 90% of the time, has violent meltdowns and rants out loud to her pretend friend multiple times a day, she does not really have any friends as needs support with all social interactions. I could go on but I won't, she will be going to a specialist secondary. There are a few in her class who are waiting for diagnosis all are academically capable, have strong friendships, at school are not violent or constantly angry, I have had parents openly resent the level of support my daughter gets and judge me due to her behaviour. I know she is in a much better position than some, we go to a number of support groups but I do feel like she is a world away from those who are late diagnosed - not to say they haven't struggled it's just very different.

My Kids could fit 2 of those subgroups so none and the author says there will be many more groups. What a pointless exercise.

I see this has become a bit of a competition now and hating on those late diagnosed who can hold down jobs.

Hi - late diagnosed, holds down a decent job and manages to do so with minimal adjustments requested. Also two total breakdowns in my earlier life, a career that took till my 40s and being diagnosed to actually get going, no friends, shit mental health and I remember actively contemplating suicide multiple times as I did not know why I kept fucking everything in my life up.

Do I have the same support needs as someone with a co-morbid LD or physical disability? Nope. But I have some common factors to a less extreme extent (that whole spectrum thing) - sensory triggers, rigidity, routine, difficulty navigating social situations and knowing other people's thoughts and intentions... I have cognition and insight and strategies that enable me to compensate for lots of this (and praise the inventor of noise cancelling headphones) - but even using them takes a larger mental load than it would for a neurotypical person - and just occasionally I ask for a bit of consideration as to that fact.

What I do consider I'm very lucky to be able to do with the level I function/compensate at is to be able to verbalise and explain things where others (I work with adults with LD) might not be able to do so - so I might just point out that a dining room someone is "showing challenging behaviour in" is acoustically echoey and too bright - have they tried working around that? Or sometimes I can understand a bit of logic that isn't making sense to care teams but makes perfect sense to me and the individual! Things like explaining that I found Christmas hell growing up because I didn't know what was in those wrapped presents and all the expectations that I'd really like them and me knowing I would have to perform appropriately or be in trouble... just being able to join those elements of the dots is handy.

Divide and conquer though - currently society's getting very very handy at this - split us to fight against the immigrants, against the unvaccinated, against the motability car owners, and split those diagnosed with ASD down the middle so that essentially we demand removal of anything at all from half of them - and they can give us what we want without being the bad guys.

I have fuck all time for the loud (and often self-diagnosed) internet echo chambers within the autism community though with the way they pile on someone wanting to understand who might be a parent or carer, or dare to use a puzzle piece - if they quit shouting down anyone who differed we'd manage to actually achieve something that would probably benefit everyone - cos no one enjoys shitty office lighting etc etc!

I agree with you. I say that as an autistic adult who managed to survive life. A diagnosis is still essential as I had a shit life before my diagnosis and I understood. There are lots of autistic kids in my family with massively different care needs and will lead massively differently in terms of independence yet they all have the same diagnosis

The categorisation is absolutely stupid. It's clearly not all the same disease.

I am married to someone on the spectrum. He was a director of a FTSE company and then ran his own consultancy. He has burnouts but they don't completely derail him. He masks but he manages his masking well out in public. I frequently think that the person who finds his intensely inwardly focused mind more difficult to live with is me, not him.

His presentation of autism bears no relationship to that of your son and it's not helpful to either party to link them together.

Much respect to everyone parenting a severely disabled or behaviourally challenged child on the spectrum.

She has BOTH.

I think more research needs to be done. Im nervous of categories with the current diagnostic model because apart from someone who is profoundly affected in all areas at all times, it becomes a bit subjective.

With repetitive behaviour for instance how do we measure severe? One that is self injurious seems worse to me. But what about other behaviours like twiddling hair, v flapping hands ? One is more subtle but they serve the same purpose for self soothing. What if the hair twiddling is constant and stops someone doing things safely but the hand flapping isnt. Is it frequency and consequences that marks severity not purpose or social acceptability.

Is someone whose special interest is litter worse than someone who like art because art is more acceptable.

Is having severely communication issues but mild repetitive behaviour worse than the other way round.

Im not against categories but I think they need to be really useful and well thought out. I dont think asd in its current form will remain though.