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 am not on board with all of mintypanda''s views but I do agree as more individuals are diagnosed, i have found a more 'so what' attitude when I say my son is autistic.

I get more follow up questions than I used to. People try to create thier own categories. The main ones are 'is he mainstream' and 'will he live independently' and 'is he verbal'

But I dint think these categories are as useful as people think as my son is at a special school but I have seen profound individuals in mainstream.

language has both productive and receptive elements and is impacted by processing speeds and stress. I have seen non verbal children follow multiple step instructions, like go get the red shoes, bring them here, then sit down. My verbal 17 year old still has 'follow a two step instruction' as a target on his ehcp and needs visual support to achieve it.

Livining independently is perhaps to young to know for some.

I know several patents of severely affected children who are constantly banging their heads. They seem to be in some kind of constant distress. No sign of the happiness mentioned by pp.

We had the same issue - the head said my son could see no signs of ASD and moreover could alternate feet - I could not film in school but had the videos of my son being supported onto the sack for his sack race on Sports Day by 2 kids ( no one else was was supported like this ) and all the kids screaming for him as he tried to jump the race. Naturally he came last and they were trying to encourage him. All the sports events were shortened for him. He bounced up and down at concerts etc but I could not film it.

He already had an EHCP and they did not bother getting high needs funding until I asked them to apply - which they did and got it no arguments

An Ed Paych friend decided they were all muppets - he specialised in ASD. As for me, as DS had a list of issues, ASD just seemed like another thing to add to the list along with SPD severe SLI disorder severe Motor some Hearing etc

He went to secondary and they did not expect the high support needs he required. Junior school were not entirely honest.

Suddenly and unexpectedly they had to put in LSA support to all lessons not just lessons with writing. He needed an LSA for domestic science even , he had to go off curriculum for PE as he just flapped on the middle of the room. They were expecting motor and language and got a whole bunch of other stuff. He was say on the SEN table for lunch.

So they began to push for an ASD diagnosis which as the school was pushing for it - he was given. The consultant has changed by then and said as her first words after ‘hello’

‘you do realise he is ASD - we will expedite the assessment’

The worse thing was that years before when he was aged about 9 SALT wrote ‘disordered speech some exholaia likely ASD ring paediatrics to confirm the diagnosis’ It was school that denied signs of ASD despite the SALT describing ASD in a school setting. We had a private OT and SALT report and they described him as a happy ASD which is a known type.

The consultant said it made no real difference as he was complex needs anyway and qualified for support but for me there was no overall understanding of what it was. When he suddenly dashed off into traffic because he thought that he had the wrong jumper - what was that about?

To a degree I can see the need for the differential but it strikes me that lots of ASD have bowel issues , swallowing issues, fits, greater propensity to viral attacks - DS has cellulitis and was on a drip. These are a different category to the masking ones.
you can’t make hour long fits, chronic constipation ( on movicol ) or hospital admissions etc. Here is one cluster group for research - the new born issues ones.

There is also the masked girl ones eg did they experience trauma did it aggravate a genetic issue etc

My son bangs his head it’s in his EHCP as self harm. But recently it’s died down a bit - now he has just broken an iPhone - is that an improvement?

Yes the 2 step instruction is the issue. My son now has an extensive vocab but the working memory is shot to pieces. He can sound like a teacher give or take the stutter/ false start but if you ask him to put a towel on the airing cupboard and put your shirt in the wardrobe ….

So we give instructions slowly pause and ask him to repeat and never repeat ourselves as he’s still processing.

Also it’s colloquial talk and it’s not just the obvious ones of ‘cats and dogs’ it’s the more obscure ones. He just misunderstand people’s intentions.

I left him to have mentoring online and I came back to a scene of him deciding that they wanted him to leave university - so from there on on even mentoring requires an LSA present to access it.

However he has remarkable visual ability to pick out items eg spot cars. He also can quote dates - just random dates.

The whole thing seems more like brain damage and not just a genetic thing . It’s also the changes in mood from sad to happy and suddenly fixating on some thing bad.

I think some people who are concerned about over diagnosis of ADHD would do well to learn a bit more about ADHD treatment and the effects on people without ADHD. Adults who are assessed for ADHD are generally experiencing something (otherwise why get assessed?) If you misdiagnose them as having ADHD when it’s actually generalised anxiety, a stimulant treatment can make them significantly worse. If it’s actually bipolar, stimulants can trigger a manic episode. If it’s actually depression, they’ll get the side effects of the stimulant but no benefit as depression is generally related to serotonin not dopamine.

So any doctor diagnosing carelessly is at a high risk of causing her patients significant harm. That’s not to say misdiagnosis doesn’t sometimes happen- of course it does- but the stereotype of being able to turn up at a private psychiatrist clinic and be guaranteed a diagnosis is completely wrong.

Yes exactly - head banging of such violence that the very first contact of head with wall creates a large open wound is sadly the first resort for too many people.

I think a lot of the people who assume 24 hour care equals a perfectly tailored environment also ignore the reality that for most 24 hour care is a group setting, and in a group setting there can be conflicts of needs - one person needs silence and stillness at a specific moment (though not always), another needs to stim vocally and/ or by moving at that specific moment... Sometimes even though staff step in to move people apart this results in person A attacking person B physically three hours or three days later ... There's no budget for complete isolation and actually most people with autism and learning disabilities do actually want social contact on their own very specific terms so isolation would be distressing too ...

It is a spectrum so one end can be polar opposite to the other in respect of needs/support.
I too have an immediate family member with ASD and I hate to say it but they are extremely highly functioning and absolutely do not require any of the financial support that they receive but of course they're not going to give that up are they? They have ASD when it benefits them but if acting like they function neurotypically suits the narrative that day then thats how they respond.
I see right through them and it really pisses them off.
I'll await the flaming.......

Personally I would prefer a symptom led model for ADHD because all kinds of bizarre things go on in the diagnostic world. Some psychs will not prescribe meds if there is accompanying Autism. The way I see it (disclosure - not a psychiatrist) if the meds work and increase quality of life, they should be prescribed, irrespective if you don’t quite meet some arbitrary diagnostic threshold. Close monitoring of symptoms and side effects over time would evidently be required. Typically the non medication interventions for ADHD benefit everyone with a busy life.

https://www.princeton.edu/news/2025/07/09/major-autism-study-uncovers-biologically-distinct-subtypes-paving-way-precision
There's new research out showing 4 different types of autism.
"Researchers at Princeton University and the Simons Foundation have identified four clinically and biologically distinct subtypes of autism, marking a transformative step in understanding the condition’s genetic underpinnings and potential for personalized care."

The point is that if someone doesn’t have ADHD and is prescribed stimulants, they won’t improve their quality of life and can in fact make things significantly worse.

The people who insist that profound autism doesn't exist tend to conveniently forget that AuADHD didn't exist until a decade ago - having an autism or Asperger's or pervasive developmental delay diagnosis ruled out ADHD in the diagnostic criteria. It was impossible to have both.

Except of course it wasn't and it did exist - the paradigm just changed.

There may be a move back to multiple separate diagnoses based on causal factors or there may be a further widening (which seems to be the fashion across neurological and psychiatric diagnosis atm) to a neurodiversity model with trait/ presentation clusters...

What few people want to acknowledge is that most facts about autism - including facts presented by both clinicians and autism activists - are actually theories or studies of one/ the lived experience of tiny self selecting groups. Neither of those things are generalisable, proven fact. A lot of it is guesswork or the attempt to generalise from experiences which are actually radically different.

Is it contingent on the arbitrary cut off though? That’s my point? Ie the Conners screeners in tandem with Qb test warranting the doagnosis of ADHD? Surely if there’s improved functioning that’s the ultimate indicator of efficacy? Not the (awaits scalding) “label”? Also- there are many non stimulant medications on offer too.

Getting covid during pregnancy has been found to increase the risk of the child having ASD and other issues, so it would make sense if other viruses like cmv could do that too. https://news.harvard.edu/gazette/story/2025/10/covid-in-pregnancy-raises-childs-risk-for-developmental-disorders/

All of this. But AuDHD is highly problematic in that you’ll have one psych attribute attentional / impulsivity issues to sensory integration needs and another to ADHD. It’s a diagnostic quagmire.

Is that true? My DS was diagnosed with ADHD in 2008 and Aspergers in 2011 and two separate health professionals suggested he had that dual diagnosis before he was referred for autism assessment. It's hard for me to separate the symptoms of the two as his ADHD medicine really helps with stimming.

That can’t be a real question. Yes, I prefer our son destroying property instead of his own skull.

@Noras are you saying your son has an ehcp at uni? Or do you have two sons and i missed the update? I just want to make sure i understand properly.

Not often I am completely and utterly speechless.

How do you have the audacity to write that post @ActuallyCannotBelieveIt

I was being trite- as you can imagine after years of it all. We had a week or more of the ‘wish I was dead’ talk over Xmas.

Yesterday he met someone from his Drama course in a cafe - ‘great he’s actually social and it’s not an organised event’ we think

The phone app showed him in a wood not in a cafe and DH and I were paranoid as we had a vision of him ‘hurting’ himself in a wood etc.

As it was he was in the cafe - the tracker is not that good.

The girl in question is a Chinese student wanting a visa - another set of worries there. I mean what could go wrong there?

So sorry for being trite - it’s exhausting. I want home to have more independence but he’s Bambi in a world of sharks.

Needless to say we ferried to and from plus had of hang around in tbe vicinity etc

For full disclosure - I have worked specifically with people with learning disabilities plus autism for a long time so hold up my hands to not having checked whether Asperger's was treated differently to early childhood autism and pervasive developmental delay, plus I have not looked up the date the criteria changed but would have said around 2012 or 2013.

It is definitely true that in older versions of the DSM and ICD - I believe at some point the ICD 10 had in essence a footnote about individuals who presented with symptoms of both despite the fact that the criteria still detailed the conditions as mutually exclusive.

I “actually cannot believe it” either, it’s such a gross oversimplification. Can you imagine every slight pain or discomfort being amplified due to sensory processing needs but having means to communicate this so that it can be alleviated? For some children this is what they experience for the vast majority of their waking life.

Because they have probably never spent 24 hours with a globally delayed kid

I spent 3 or 4 hours with my friends kid at our house.

He took his Willy out and then wanted to touch the pizza as well as wildly dancing around. My daughter was distraught. My ASD son who was experiencing OCD’s a the time ( incessant use of hand gel to the point t of skin removal ) at the time was chucking up and refusing to eat and it was bedlam/ chaos.

She then asked why she had not been invited back - I felt so bad as she is lovely / intense but lovely.

This mum is exhausted. Her DS is not the picture of all happiness and he has his moments of upset.

Whenever I get down it’s wrong but I thank God that her life is not my life. He’s 100% exhausting.

She has a horrible time.

Significantly high needs are horrendous and unrelenting. He’s got a placement now so she has some respite.

This is the main problem with school staff. A lot of them can't possibly fathom that a child who appears to be fine in school is in fact NOT fine in school and is masking, leading to meltdowns at home because they're so stressed by school. If these teachers spent more time listening to parents instead of judging them, and gossiping with each other about disabled children then they might actually help these children. But it's easier to deny the evidence that's in front of their faces.

And it is absolutely ableist to judge an autistic child and ask why a diagnosed child needs to collect another label, or whatever it is that you said you're regularly hearing from school staff.

The education system is a huge, huge part of the problem of why so many families are forced into getting a diagnosis actually. Tens of thousands of children are denied support because they don't have a diagnosis, (support is meant to be based on need, not diagnosis but there is a massive problem with schools gatekeeping support) so the parent gets a diagnosis in the hope of getting support but still no support, just judgement from people who are paid to care about these children and just don't.

Perhaps we should look at the failure of SEN Support in schools, where schools can just say no to providing any reasonable adjustments because "they don't look autistic to us so we don't agree they should need anything, just get them in". Parents have absolutely no way to force schools to provide support. Or the failure of the EHCP system where something like 98% of tribunals are successful, and a diagnosis does help even though it shouldn't make a difference.

The education system is leading to trauma and mental health issues driving an increase in families trying to get a diagnosis because their child is being failed by schools. It's happening up and down the country. Look at the Facebook group not fine in school. Over 75k members most of whom their children have suffered in schools and been driven to a diagnosis to try and get a crumb of support or understanding.