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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

That ASD needs to be better categorised

673 replies

Noras · 29/12/2025 22:22

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.

OP posts:
Thread gallery
9
x2boys · 30/12/2025 07:34

GlomOfNit · 30/12/2025 00:54

OP, 100% with you! I do understand the academic rationale (to some extent) but IMO getting rid of the diagnosis of Aspergers/HF autism was a mistake. Autism is a developmental condition that means that everyone with a diagnosis may share some characteristics and challenges, but to say (as so many very articulate and highly functioning autists do) that someone who is capable of going to university independently, of having relationships and a family, of holding down a job, faces the same challenges as someone who has massive social interaction issues, someone who cannot communicate functionally with others, someone whose autistic focus means they are fixated on one specific thing to the detriment of everything else - it's absurd!

My son is autistic. I used to say 'severely autistic' but get slapped down from time to time by someone whose autism apparently doesn't prevent them from being able to articulate that everyone on the spectrum is severely affected by their autism at times. Ok, so I've moved onto the phrase 'profoundly autistic'. Sometimes I just ditch the ASD and explain (oftentimes while I'm hanging onto him in a supermarket as he lunges towards the shelf of whatever he's fixated on, or hammers my shoulders with his fists because I'm not letting him, or lies full length on the floor) that he has learning disabilities. (He has that, too.)

My son was diagnosed aged 2.5. To me and my DH (who actually works in a related area) this didn't come as any great shock as we'd been seeing things he wasn't doing, and things he was, for a year by then. Later we also sought, and got, a diagnosis of significant LDs (absurdly, he hadn't been assessed/diagnosed for that earlier and was already at a SS for significant LD by then). He may also have ADHD but this is much harder to diagnose with his lack of compliance and cooperation! He is now, thankfully, continent but was in night nappies until about 10, and day until 7. He has absolutely no sense of personal safety in terms of water, electricity, cars, etc. His fixations and obsessions make him anxious and normal life impossible. His largely non-verbal communication means that very few people can understand him, despite the wide range of communication devices and means he's able to use, so when he has to rely on strangers for his needs, he'll be so frustrated. (I can't bear to think of it.) He won't be doing GCSEs of course. His school is great and I think they should push him more as he's actually starting, at 15, to be able to read and write a tiny bit, but a lot of what he does is aimed at what we all laughably call 'independence' - because he never WILL be independent. He has OCD. He has a massively limited diet and is underweight. He can be violent, to us, teachers and to himself. He's absconded from home a few times and we lock the place down like a prison.

Please tell me, middle-aged newly-diagnosed professional with a family and a shiny new lanyard, how much in common does he have with you? And please stop telling me not to use phrases like 'highly functioning' or 'low functioning'. I know very well what I mean and I think you do, too.

OP, there IS no 'autism community' as far as I'm concerned. Parents like me and my husband have been driven out by identity-driven and highly articulate people, occasionally self-diagnosed, who tell us we're ableist parents, doing it all wrong, or that we're not allowed to say that our child might be a tad more severely affected by autism than they are. I had enough of it a long time ago.

What I would like any casual readers of this thread to take away is to think a little about the massive surge in diagnosis and resultant strain on an already broken system. To ponder how useful it actually is to people like my son, and parents like us, when someone in middle age, who has perhaps had jobs, relationships and got on fairly ok in life, to seek a diagnosis and then go on and ON about it. Because over the last few years, I've come across more bewilderment and incomprehension when I say of my son 'he's autistic'. Members of the public who don't have an autistic family member seem to think autism is something else, something different to the way my son presents. And I wonder if this is because there are so many very motivated, intelligent, highly articulate people who are loudly proclaiming their own autism.

So yes, I'd welcome a total overhaul of the way it's categorised. I understand that the more research is done, the more it's thought that there are probably multiple factors involved in autism being present, and probably multiple ways of being autistic.

I hink there is a different autism community for children like mine and yours and its growing im on a couple of american face book groups for parents and carers of children with profound autism and we all share the same frustrations ,paticularly that the " autism community " shut us down our children largely dont have a voice so they need to be advocated for .

Sutant0 · 30/12/2025 07:35

Squirrelchops1 · 30/12/2025 07:26

I agree. I've worked with people with learning disabilities and when I encounter people also with a diagnosis of ASD who cannot talk, who will never live a life fully independently, who will always need support from a carer, I find it trying to have to make so many amendments for neuroinclusion because a person can't cope with the overhead lights in the office for example. Yes, I understand this can be really challenging but compared to someone who will never live without carer support......
Yet which people with ASD do we hear about more in the media?!!

Autism is a whole lot more than light sensitivity. 🙄 A learning difficulty is separate to autism.

So you’re saying adjustments for disabilities are trying. That’s ableist. Do those with more physical disabilities get such short thrift too?

summerday25 · 30/12/2025 07:37

Sutant0 · 30/12/2025 07:18

You don’t get a diagnosis if you live a regular life and just show a few traits.

Autistic traits have a high threshold and need to significantly impact life.

Show quote history

Sorry, but I disagree. I find that locally they are chucking diagnoses out in a never ending fashion, especially to younger children - I’ve seen this personally. There are lots of parent based questionnaires that form part of the diagnostic pathway and I really feel that many ‘know’ what they need to write. This then leads to ‘my child needs more in school and DLA (of which they also know what to specify/obtain help with)’, which then leads to the overwhelmed systems we are seeing. It’s frustrating and as much as I agree that no, we can’t see what is happening behind closed doors in respect of presentation, I will argue that a child whose quirks lead them to fit some of the diagnosis is not the same as my DD whose urine soaked clothing I need to ensure is changed numerous times a day, or whom I need to manage nigh on every minute of her waking moments to ensure her mental/ physical safety, but then my DD is not as severe as those whose children are not able to verbalise a single word.

ChrimboLimbo · 30/12/2025 07:38

There was a heartbreaking thread some years ago from a mother saying the same. Her child was at the furthest end of the spectrum, unable to do anything, still like a newborn. She just wanted the words to describe her situation, she was fed up with people saying it was 'a superpower '. The replies were awful, people refusing to see how different a situation could be.

Keptmeguessing · 30/12/2025 07:39

Yanbu, I think the levels system that some countries use would be beneficial. I’ve found myself describing using the levels in the past as it gives a clearer picture

MyThreeWords · 30/12/2025 07:41

Completely agree with the OP. It is infuriating to see how the people who are truly disabled by autism have become sidelined by this new social focus on a much broader conception of autism.
The takeover has become so extreme - on MN at least - that I have some hopes that the bubble will eventually burst and we will return our focus to the complex unmet support needs of people who will never be able to live a fully independent life.

Sutant0 · 30/12/2025 07:41

summerday25 · 30/12/2025 07:37

Sorry, but I disagree. I find that locally they are chucking diagnoses out in a never ending fashion, especially to younger children - I’ve seen this personally. There are lots of parent based questionnaires that form part of the diagnostic pathway and I really feel that many ‘know’ what they need to write. This then leads to ‘my child needs more in school and DLA (of which they also know what to specify/obtain help with)’, which then leads to the overwhelmed systems we are seeing. It’s frustrating and as much as I agree that no, we can’t see what is happening behind closed doors in respect of presentation, I will argue that a child whose quirks lead them to fit some of the diagnosis is not the same as my DD whose urine soaked clothing I need to ensure is changed numerous times a day, or whom I need to manage nigh on every minute of her waking moments to ensure her mental/ physical safety, but then my DD is not as severe as those whose children are not able to verbalise a single word.

Show quote history

That isn’t happening, quite the reverse. The waiting stones for diagnosis are years, it’s under diagnosed as families are left to wait years and can’t afford the £3k for a private diagnosis. You don’t get anything extra at school with a diagnosis, it’s all needs based and the bar is high. Same for DLA.

A few quirks does not get you a diagnosis.

firstofallimadelight · 30/12/2025 07:44

I get what you are saying I’m autistic and have lots of issues around people/smells/food/temperature /noise etc but I am married and have 3 children and a part time job (after many failed working attempts) I rarely meltdown (outwardly ) but have self harmed and considered suicide in the past.
Ds is autistic, has full time 1:1 support at school, was unable to talk /needed nappies until the age of. 7. He’s fairly academic and excels in maths but socially/emotionally is more like a 5 year old (he’s 10) we don’t know what his future looks like but it’s likely he will always require support.
Our situations are totally different yet under the same title but I guess that’s true of most conditions? Theres conditions that can be manageable and fatal but have the same name.

Clutterbug2026 · 30/12/2025 07:45

summerday25 · 30/12/2025 07:37

Sorry, but I disagree. I find that locally they are chucking diagnoses out in a never ending fashion, especially to younger children - I’ve seen this personally. There are lots of parent based questionnaires that form part of the diagnostic pathway and I really feel that many ‘know’ what they need to write. This then leads to ‘my child needs more in school and DLA (of which they also know what to specify/obtain help with)’, which then leads to the overwhelmed systems we are seeing. It’s frustrating and as much as I agree that no, we can’t see what is happening behind closed doors in respect of presentation, I will argue that a child whose quirks lead them to fit some of the diagnosis is not the same as my DD whose urine soaked clothing I need to ensure is changed numerous times a day, or whom I need to manage nigh on every minute of her waking moments to ensure her mental/ physical safety, but then my DD is not as severe as those whose children are not able to verbalise a single word.

Show quote history

This is disablised.

ProfessorRizz · 30/12/2025 07:45

ProfessorRizz · 30/12/2025 07:35

The most recent research has started to untangle ASD and is looking into (broadly) 4 types:

https://www.nature.com/articles/s41588-025-02224-z?utm_source=chatgpt.com

Sorry missed the discussion downthread!

Sutant0 · 30/12/2025 07:46

MyThreeWords · 30/12/2025 07:41

Completely agree with the OP. It is infuriating to see how the people who are truly disabled by autism have become sidelined by this new social focus on a much broader conception of autism.
The takeover has become so extreme - on MN at least - that I have some hopes that the bubble will eventually burst and we will return our focus to the complex unmet support needs of people who will never be able to live a fully independent life.

Um my children have unmet needs and will never live a fully independent life but don’t fit the op’s tidy little picture of what she thinks autism difficulties should look like .- autism is catastrophic to live with. Autistic people are hugely underemployed, fill our prisons and have a high suicide rate. They are let down across all services and collectively get next to nothing meaningful.

Our society needs all autistic people to have their needs met.

Original poster
Noras · 30/12/2025 07:47

Sutant0 · 30/12/2025 07:28

What a ridiculous misogynistic gate keeping post.

Many of those late diagnosed are women who were hideously let down by the male focused diagnosis system who have had hugely difficult lives. Masking is catastrophic.

All my children are autistic and the levels of masking varies. It does not make their autism any less valid. The one who masks the most has had the most support from services. One of my children can go in and out of being non verbal.

You can’t categorise autism

Autism has destroyed my children’s lives and mine. It doesn’t need to fit your gate keeping picture because NHS and diagnosticians around the world thankfully recognise how disabling and destructive it can be however it presents.

Show quote history

It’s not gate keeping - I have not mentioned what resources are required.

My issue is that I want it to be cured or better understood.

However It depends on what you mean by valid. By valid are you suggesting that all support needs are the same or do you accept that as presentation varies so do support needs.

My son needs support to survive/ live eg to ensure he can access food/ have meals and exist. If the local corner shop were to shut he can’t access food.

As things are he can’t deal with his toileting requirements. He would be distressed to be left alone at night. He can’t even walk to the corner shop if it’s dark.

I cannot leave my adult son to go on holiday unless I organise PA care. I have not had a holiday without him all his life and to have a holiday I have to go to social care panel to get the funding for PA support so he is not neglected. I could be prosecuted for neglect if his care needs are not met as long as I am primary carer.

He learnt to touch his nose at aged 11 as he had no idea where his nose was.

OP posts:
Sirzy · 30/12/2025 07:49

All things like this do is turn it into a competition as to who has it worse and is exactly why you can’t categorise something like autism. It doesn’t fit nicely into small boxes and if you try to force people into small boxes it will make accessing support even harder for most.

HairyToity · 30/12/2025 07:50

My mum complains of this. She has a 46 year old autistic son, who has considerable learning difficulties and can't read or write or cook himself a simple meal. He only ever attended special needs schools, and was diagnosed over 40 years ago. My brother didn't talk till 7, and repeats the same questions again and again, and talks to himself. For my mums generation it was autism and aspergers. Hugh functioning autism wasn't a thing. Mum is always astounded when people talk about their children having autism, and to my mum they are fine compared to her son. She thinks it's ridiculous they are all bunched together, and doesn't understand why they've removed the phrase aspergers.

Sutant0 · 30/12/2025 07:50

Keptmeguessing · 30/12/2025 07:39

Yanbu, I think the levels system that some countries use would be beneficial. I’ve found myself describing using the levels in the past as it gives a clearer picture

No it isn’t useful . It’s American and there is a reason it isn’t used here. It is based on levels of need.It’s mis quoted for a start as it says it’s important to recognise that needs can vary throughout life. Two of my kids have hit all levels with one getting steadily worse. Autism is almost impossible to categorise. It’s hard enough getting a diagnosis is at is let alone a category which can be very easily disproved.

SpaceRaccoon · 30/12/2025 07:52

OP as someone who was diagnosed with ASD as an adult I firmly agree with you. I hate that they got rid of the Aspergers classification and consider myself to have that.

Animatic · 30/12/2025 07:54

Autism is viewed as a spectrum so formally speaking you are BU.
I think though it hasn't been studied enough. So in the future, when we understand neurological conditions better it might be split into few conditions and not just one bucket for everyone.

Sutant0 · 30/12/2025 07:56

Noras · 30/12/2025 07:47

It’s not gate keeping - I have not mentioned what resources are required.

My issue is that I want it to be cured or better understood.

However It depends on what you mean by valid. By valid are you suggesting that all support needs are the same or do you accept that as presentation varies so do support needs.

My son needs support to survive/ live eg to ensure he can access food/ have meals and exist. If the local corner shop were to shut he can’t access food.

As things are he can’t deal with his toileting requirements. He would be distressed to be left alone at night. He can’t even walk to the corner shop if it’s dark.

I cannot leave my adult son to go on holiday unless I organise PA care. I have not had a holiday without him all his life and to have a holiday I have to go to social care panel to get the funding for PA support so he is not neglected. I could be prosecuted for neglect if his care needs are not met as long as I am primary carer.

He learnt to touch his nose at aged 11 as he had no idea where his nose was.

Show quote history

Without a huge amount of support my kids will die. They are in and out of hospitals. Does that reach your level of need? They don’t fit your picture of need though because it can be less visible at time( often not)but trust me it’s there.

What is this- a needs competition that you get to lead?

Sutant0 · 30/12/2025 07:58

SpaceRaccoon · 30/12/2025 07:52

OP as someone who was diagnosed with ASD as an adult I firmly agree with you. I hate that they got rid of the Aspergers classification and consider myself to have that.

Good for you. I was late diagnosed and don’t consider myself as Asperger’s but autistic because I am. I don’t need to a socially acceptable label to make it more palatable. It’s shit having autism and the more that recognise that the better as I for one am fed up with battling life for myself and children in a world that has zero understanding of the difficulties those with autism face.

SpaceRaccoon · 30/12/2025 08:01

Sutant0 · 30/12/2025 07:58

Good for you. I was late diagnosed and don’t consider myself as Asperger’s but autistic because I am. I don’t need to a socially acceptable label to make it more palatable. It’s shit having autism and the more that recognise that the better as I for one am fed up with battling life for myself and children in a world that has zero understanding of the difficulties those with autism face.

Show quote history

The label isnt remotely about being socially acceptable, far from it now with Aspergers, a lot of people get really pissed off at the term.

It's about what accurately and realistically describes me and others like me.

whatsupwithmyhead · 30/12/2025 08:01

FashionVixen · 30/12/2025 02:23

Agree entirely, OP. Two members of my extended family have ASD diagnoses. They are at opposite ends of the diagnostic spectrum.

The widening of the parameters of ASD in DSM5, especially reducing min symptom domains from 3 to 2, led to an explosion in diagnosis, including people who have very limited challenges relative to those diagnosed under the older criteria. It’s insane that someone who is non-verbal, hyper-sensitive to multiple every day stimuli with toileting issues is given the same diagnosis as someone who has social engagement difficulties and struggles to tune out background noises. It does a disservice to everyone.

I agree with you - though would add that I don’t think that the diagnosis of people in that wider categorisation is any less legitimate.

Knowing my DS has ASD has been an absolute game-changer for us - I think he could easily have gone through life being seen as a bit “quirky”, a bit difficult, a bit confusing. Recognising the ASD feels like we have suddenly been given an operating manual.

But I do think we need some way to differentiate this from people who are unable to function in day-to-day life without significant support. Not least because I think there’s a risk that we hear a lot more about people who are “high functioning” and those who are not get drowned out.

Araminta1003 · 30/12/2025 08:04

My eldest is ASD but the high functioning ex Aspie type, just like my dad most likely (father undiagnosed, but all typical behaviours). DS late diagnosed via research study.
Seems to me that people being carriers and ex Aspies being successful in society and marrying may also come into it.
My DS is already very successful, living with my brother who is very similar and understands him. Agree it is completely different scenario but both of them are a aware of their tendency to melt down, be overwhelmed, not spot stress etc and both quite focussed on not passing it on as it does come with mental health challenges. Also this whole rumour that ASD dad passes on ADHD to a daughter etc. It would be good to understand it all better.
DS has to eat really well, rest, sleep and exercise to keep himself in check mentally, far more than my other DCs do. He cannot tolerate sugar or alcohol at all. I wonder sometimes whether the whole Silicone valley healthy trend comes because that is what many ASD/ex Aspies need to thrive. DS is a little bit too obsessed with diet and vitamins etc, but he seems to need it more than my other DCs (NT). He is also living in a less overwhelming country than London now, better air etc. - he is lucky to be able to make that choice. He has never needed extra resources from the state, but does need to adjust and self manage quite extensively and needs awareness. As he is in tech with a lot of people like himself they mutually support.

Original poster
Noras · 30/12/2025 08:06

Sutant0 · 30/12/2025 07:46

Um my children have unmet needs and will never live a fully independent life but don’t fit the op’s tidy little picture of what she thinks autism difficulties should look like .- autism is catastrophic to live with. Autistic people are hugely underemployed, fill our prisons and have a high suicide rate. They are let down across all services and collectively get next to nothing meaningful.

Our society needs all autistic people to have their needs met.

Show quote history

In what way do your kids have unmet needs and how have you tried to advocate to get those needs met?

Social services are required to do a needs assessment. Have you gone to social services?

What exactly is my tidy picture of what ASD is ?

I don’t have a picture and what is more would love money going into more research. I want it to be cured or kids to be born free of it.

Also please bear in mind that I am most likely ND myself eg left handed, last picked for sports at school . I also had prolonged fits when younger and had to be tested for meningitis when a small kid as one left me unconscious. I struggled to write when dyspraxia was never recognised etc. I talk rapidly . I struggle to go down escalators. I actually tell people how my day is when they ask ‘how are you’ and struggle with pleasantries. I hate bright lights / noisy environments and as a young person hid under coats under the table at nightclubs as could not cope. I watch the same tv programmes on repeat and also one little thing, I am missing half my hair as I pull it out as a stim in a half asleep fog. That’s a very visible thing. The worse thing is that I think that I recognise someone but they are not the person I think they are. I’m also fixated on certain worries.

I’m pretty sure I could ace a diagnosis of ASD but don’t want to bother. I’m aware of how horrible life is when you are different at school.

I am not disabled and can adapt or try to adapt. However were I younger I would have had the benefit of tech and extra time for exams as well as counselling at university. I do understand unmet needs as I had a load of them but in the 1960s people hid differences and did not talk of them.

My adult son cannot adapt and if I want to leave him to go on holiday I need to organise PA support and go to panel for it etc. Frankly he would not be able to access food if the local corner shop shut and if I did not agree a holiday with social services and just left him I would be accused of neglect.

OP posts:
Seelybe · 30/12/2025 08:10

@Noras I completely agree with you. It seems as though neurodivergence has become a bandwagon to account for, or as an excuse for, any behaviour, personality or resilience outside of what is now described as typical. What about the natural range of variation in humans? It has to be the level of support needs that are really relevant, but catch all diagnoses just undermine things for the minority with the greatest needs.