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.

"Community" is such a fashionable word at the moment but it's been stretched to the point of losing any real meaning - I've also heard talk of the "menopause community" and "the non verbal community" - for different reasons both are hardly "communities" - they're "common interest groupings". Members of a community surely have to identify THEMSELVES as such in order to be a community... which suggests that only the minority able and willing to do so are actually the community and yet they are understood to speak for those who by dint of not being able to or wishing to identify with any/ that community are a different interest group...

Our local ICB has stopped taking referrals for neurodiversity assessments for over 25s for the exact reason that many people have mentioned. Resources being allocated for diagnosing adults, most of whom are functioning reasonably well with families, jobs etc, Meanwhile children with significant needs are having to wait years and years for a diagnosis. That doesn’t mean these adults don’t have ADHD or autism, but in a service with limited resources we need to focus on those for whom a diagnosis, and the support it brings, will make the most profound difference.

It’ll be very interesting seeing what the upcoming SEND White Paper has to say, with its plan for every mainstream school having a resource base, with the idea being fewer children will need to go to a special school.

I understand your frustration and suspect it is at least partly due to the tendency to slap an ASD label on and then put everything under it, speech delay, non-verbal, sensory processing, global development delay, anxiety, etc etc.

Then there is the estrogen impact which is why women over 40 who have managed suddenly can’t manage.

Then there are the societal changes which impact how well someone can function, environment and communication expectations. Compare a 1960s primary classroom to a current one. Intellectually able autistic kids would do better in a single desk, face the front, no talking, blackboard, white walls strict rules set up than a modern colourful, grouped desks, group work, smart board room.

Children were terrified and bullied into compliance and considered to be “fine”.

In late primary I was a well behaved, academically high achiever. I was also severely underweight - food issues not accommodated, covered in psoriasis - stress, frequently wet myself - poor interoception, barely slept and had no friends. I just needed to try harder because I was too smart to have those issues.

Adults have an enormous amount of control and choice in their day to day existence that children in school do not have. The smartly dressed woman is wearing a very specific combination of clothes which work for her sensory issues in a job that works for her differences does nothing beyond work but barely survive - you don’t see that. Put the same person aged back to 9 in a current typical primary classroom, with a rigid uniform policy and the difficulties will be very visible.

As far as the late diagnosed being hostile to having their capacity queried do you think could it be from growing up in an ableist society and internalising it?

It’s like seeing someone’s curated social media and comparing it to your actual life. You have no idea how someone else’s 24/7 compares to yours. Or comparing parenting toddlers to teens, not the same both are hard.

I wish in a sense that the likes of ADHD medication could be accessed without the label and rather with a thorough analysis of symptoms and monitoring response to meds over time. Assimilating the label can do more harm than good- not all the time, but some of the time. Lots of adults are seeking diagnoses for access to stimulants.

I completely get this point. My daughter has suspected ASD but she masks and seems to teachers to be ‘basically ok’ in school. her struggles are significant and for me it’s the constant fear of her suffering another mental health crisis which is the worst thing. But I don’t think it’s at all comparable to the challenges faced by those who have a non verbal child with challenges like pica, violent outbursts, who struggle with toileting. It’s just nothing like it. I have wondered sometimes whether the diagnosis of ASD is actually so broad now as to make it sort of meaningless? Saying this hesitantly as I’m no expert, but if autism captures such different experiences but you’re not allowed to say ‘mild’ autism or Aspergers - and it all has to be called the same thing, ASD - I do feel the term starts to use its usefulness? I do feel that the way in which my daughter is neurodiverse - whether it’s ASD or not- is significant and worthy of proper understanding and support. But it’s not at all comparable to someone with a non verbal autistic child - and presumably them having the same diagnosis is unhelpful to parents of children with severe autism as well, because I’m already hearing ‘autistic kids can be fine, you won’t necessarily get an EHCP just for autism’ (as if an EHCP is some sort of prize, sigh).

"mild" is how NTs see it. Just because we can talk, doesn't mean we don't struggle

Reasons labels should be used (not comprehensive)

• to improve outcomes for the labelled
• to differentiate the symptoms from typical development / normal variation in experience
• to tailor / make appropriate services available for the labelled
• to allow rigorous research to be produced examining effective interventions
• to enhance and deepen understanding of the named condition
• to validate distress and enable the labelled to reach out to a community of similarly labelled individuals for support and information

How did the revisions to Autism categorisation lead to improvements in any of these areas? With the exception of the last point, perhaps.

Another thing I struggle greatly with is the homogenisation of NTs into one discrete group.

I don’t mean to diminish anyone’s struggles least of all my daughter who is very verbal and articulate but has significant challenges not least socially. I’m not NT either, whatever that means, in the sense that I have a diagnosis also. But surely it’s possible to recognise that but also recognise it’s not really comparable to some of the other examples on this thread, and to therefore question whether one umbrella term for both is the best way of describing these very different struggles.

They are advised of those things just not how life works
I bet everyone is a bit autistic and these are just variations of being human

I am sorry I was wondering please where to apply to for pa help at uni? I am currently doing all that and more for my uni autism / adhd / ocd child whose uni is 4hrs away and I am struggling. Child masks but can only do so with me in the wings peddling furiously.

It's not a "label". A label is what I have on my clothes. Not a diagnosis

This is a very interesting thread and I agree that it’s such a wide-ranging disorder / you can’t compare someone more profoundly affected with learning disabilities and incontinence to someone who has been able to live a regular life, even with the resulting mental health issues or masking they have to endure.
My DC (young adults) are so obviously ND - they both have mental health issues and one in particular struggles with friendships/relationships through their life, has gender dysphoria (massively prevalent in the autism community and was bullied in school. They both need an assessment bit as they are adults it’s up to them although they are both coming round to the idea as they do massively struggle mentally.

Yes my ND DS has far far more in common with NT children than with a profoundly autistic child. That’s not to diminish his differences or that he struggles with certain things but it’s completely a million miles apart.

Yep the in between need it too.. I'm not necessarily saying there would be two categories, severe and "not" severe be many... but it still needs differentiating to treatment/support can be tailored.

For example "cancer". An umbrella term for a mutating cell growing uncontrollably...

Someone with a tiny malignant melanoma that can easily be excised quickly and will then be cured still has cancer. Someone with stage 4 pancreatic cancer with days to live has cancer... But there are different subtypes and categories with their own names and classifications...and this is vital to treatment and counselling of that person.

I’m on the face of it high functioning and late diagnosed.

I’ve been self harming since I was 5.

I had arfid as a child but was just sent to bed hungry and shouted at and made to wash the clothes I vomited on.

I used to scratch if I had a weird label on my clothes until I bled. I still do but I’m an adult and can cut them off.

I lecture but universities are full of high-ish IQ ASD folk and it’s a good place for me. I’m not unique here.

the damage that was done to me by not recognising my ASD and adhd and putting support in place when I was a child is immense.

it also made me vulnerable to the man who stalked me and violently raped me. Don’t get me wrong, what he did is what he did - but someone “normal” would have never got in the situation and because they aren’t the weirdo the police would have listened better.

also. I’ve never held down an adult relationship until I was 50. My ex is also autistic but since we split more than 15 years ago I’ve never had a relationship until I met the current gentleman friend.

please don’t try to make it into a competition because that is a bit three Yorkshiremen, and assistance is based on need not diagnosis anyway.

It’s not a fucking label.

Personally it would not impact DS support as it’s based on his other needs as well and not the ASD per se

DS’a language is on the 1 percentile receptive or 1/100 people
0.75 percentile or 1/ 125 people
and motor 0.5 percentile 1/200 people
working memory 2/100 people and 4/100 people
He also has borderline hearing
bowel disorder etc

We are well in the red zone

But it we just had ASD it could be a different matter

I am determined to make DS independent as possible as I think that the state won’t exist in 10 years time on its current form. Support will become so diluted that it will just cease to be

All I can do is try to work with what we have and make him as safe as possible.

My current strategy is to set up SMART targets with PA to maximise his life skills learning and be as firm as possible ( whilst empathetic) to get him to achieve eg

walk to another shop alone 15 minutes walk crossing main road.

Be aware and check incoming emails university

Catch a bus on his own from a to b (very short journey in a busier city. He has only done. This in a small town).

I will build up on these as we go along. My hope is that I / PA do enough so that he can access work when he graduates / if he graduates. By work I mean something like in a shop or office etc.

Today we are cooking together. He will make a basic tomato sauce with me etc

I also plan to write him a life skills manual like a bible to follow eg brush teeth / use retainer / wash retainer / change underwear daily etc

The brain keeps developing until you are 25/26 so I’m hoping he gains a few more years maturity to reach mental age say around aged 15/16 in reality.

I refer not to the “diagnosis” but the specific name applied to such diagnoses. “Name” or “term” might be preferable to label as label appears to grind some people’s gears for some reason

Yes because it’s dehumanising. Belittling.

do better.

Like it or not, it is, in the literal sense. I apologise if I’ve caused offence and incited you to use such language- obviously I’ve touched a nerve!

I do have a problem with some of the gatekeeping of neurodivergence (along the lines of “you can’t be a little bit autistic”). Considering the heritability of ASD and ADHD I look at myself and DH and our respective families and see plenty of evidence even though I think all would be considered NT.

I don’t think I am diagnosably autistic (and had some basic screening as part of my ADHD assessment which agreed) but I definitely share some autistic traits with DS and I find borrowing some of the ASD-focused strategies we use with him helpful myself. My other DS definitely has ADHD and ASD traits but there’s a very clear difference between the two DC when it comes to impact on their lives (I can point to specific ways in which it disabling to one, for starters) that mean I would not consider there to be any value in assessment.

Also DS has NT friends who are struggling way more with school for various reasons than he is - there’s no exclusivity in finding life difficult at times.

These are human beings you’re talking about, not an inanimate object.

Do better.

Do you not wonder where it comes from and what causes it. Do you not hope for a cure?

I am definitely dyspraxia and I hate it. I hate not being able to go down a slope except on my backside. I hate being careless with flashes of genius. I have looking messy and not quite put together. My Christmas present wrapping is a disaster. I hate blurting things out and regretting it.i hate that i always feel guilty and apologise all the time. I hate my messy writing and spelling mistakes when what I write is usually quite intelligent. I hate having to finish off peoples sentences because they speak so slowly. I hate this huge amount of empathy I feel for friends - they hurt and I cry for them - it’s overwhelming. I hate being abused at university and not sticking up for myself as I was too scared to say anything. I hate this odd thing that when something disastrous happens I try to normalise it as soon as possible. I hate that I need to retreat into my shell exhausted by people. I hate having to know about a subject excessively and reading all about it.