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.

We have one young woman attending our unit whom I think actually has very extreme ADHD and not autism at all... But then 1) saying "extreme ADHD" is forbidden, like saying "profound autism" is (concentration span of around 30 seconds - up to two minutes for a special interest, mild to moderate learning disabilities) and 2) I'm not qualified to diagnose.

We actually get people with proper diagnosis soup - really serious conditions which shouldn't have been diagnosed together - especially if they've moved internationally or have a chaotic history (adults - mostly but not all young).

Which reminds me of claims I've seen on social media that people with autism age slower than neurotypical people - this certainly made me do a double take as the few older people we have seem decades older than they are, probably due to being on ultra high alert absolutely every second of their lives unless (possibly) asleep, as well as to self inflicted injuries. It is tragically common for people to have lost their eyesight in their 50s due to life long brutal head banging, for example.

The Sen in school is a failure of funding - schools don’t have enough to employ enough people and spend enough time. When they say no they mean where the fuck do you think we can find that money from

we got rid of special schools because mainstream might be fairer - because special schools were a dumping ground but we didn’t put a robust system in place to cope and because it had to be cheaper - when logic dictates it will be more expensive

@Tiredelf - I agree with you re schools, but it is also the “system”. A lot of problems happen at lunch time when mere lunch time supervisors are on duty, not trained teachers. A lot of autistic kids may actually cope with a full morning at school, lunch at home and one afternoon a week of a full day after lunch. Some parents would actually be able to facilitate this part time timetable. But the computer says no if you do not have a lot of paperwork in place to demand this kind of timetable. In some European countries plenty of young children only attend school for that amount of time anyway. It is unrealistic to expect an autistic child to attend school 8.50-3.15 pm every day and have lunch at school, with no down time. School staff do not have the flexibility to just easily adjust for said kids. Perhaps the SEND units everywhere would facilitate more of a calm down approach/part time etc. Kids learn best in short bursts anyway when they are feeling positive in their environment. The huge stress autistic kids can feel in school is not conducive to learning.

Very interested to read this as ADHD meds had the effect of triggering a manic episode in one of my close family (severe enough to be sectioned) and near-suicidal depression in another. An adult child of mine newly diagnosed with ADHD is eager to try meds and I'm so worried about it.

@ActuallyCannotBelieveIt 's post is breathtakingly ignorant. Just monumentally fucking stupid.

My son plucked himself completely bald over the space of about 4 days during a period of no sleep and constant stimming. Then he started to rip off his scalp skin. We don't know why, he can't communicate the causes of his distress or give any indication of how we can alleviate it.

Just another cheerful globally delayed autistic kid who thankfully doesn't know the life he's missing out on I guess. Nothing like as bad as Ms Oh-I'm-Just-So-Tired-Of-Masking & her life of unique suffering.

FFS.

Well you just stooped to their level by mocking children who have to mask to survive. It's not a competition.

I think the new ASD label has made things more confusing.

I was diagnosed with Asperger's at 42 (11 years ago) so maybe I'm one of the annoying ones but the thing is, I didn't really mask much - I've never been able to. Until I was well into my twenties I was selectively mute and until puberty I barely ate. I ate baby chocolate pudding for breakfast until I was 6 or 7. But Asperger's wasn't really known about and no-one noticed or tried to help me.

Then I had two autistic DS's - one more severely affected but he's extremely academic and he doesn't have adhd so he's just about surviving university. My other DS is less autistic, less academic (intelligent but terrible executive functioning) and I'm still financially supporting him with no help.

Now I'm completely burned out from having to survive Asperger's as a single parent. I must say it's quite galling having grown up with what would probably be considered very severe social difficulties and absolutely no help, to now being completely burned out with cfs and still receiving no help because so many people are now saying they're neurodivergent. I'm surviving because of an inheritance - when that's gone it's game over for us.

Perhaps the differentiation should be: potentially maskable autism, or non maskable autism?

Yeah I agree with you. I used to work in a hospital for people with learning disabilities and mental health conditions and we had several long term inpatients there with profound ASD. A life where you live away from your family…in an institution really, where you have two staff members supporting you at any one time with intimate personal care despite you not knowing them and maybe having never met them before. Being restrained to prevent injury to yourself, forced to wear a helmet constantly, being medicated for the same reason. How can anyone say ‘that’s all they know so it’s ok’ you are talking about people who suffer extreme distress every hour of every day and any potential intervention is likely to make their suffering worse.

That’s actually a really interesting proposal!

Some say it’s the exhaustion / depletion caused by masking that should be considered re autism, rather than the masking itself, which I get. Because everyone masks- it’s called learning social rules, and comes easier to some than others.

If my colleagues could see me in my home environment… 🫣

Firstly, I have only read about half of the comments.

Secondly. I hate this debate, why does it always have to be a fight over who has it worse, why can't we just support each other. Its not just about how high your child's needs are, but about how you cope with them, what support you have, what support your child gets.

Thirdly, ASC is nuanced. A high functioning teen girl who masks might end up taking her oen life because of the mental stress of poor support for ASC. How is that 'easier' than a very low functioning child with ASC ? Many low functioning children I have worked with are generally happy because they don't know any different- the mental anguish is felt by the family not the child. I AM NOT saying all low functioning children, its an observation that some are, as an example.

For clarity I work in respite care for disabled children and have also worked in special schools.

Fourthly- please remember the kids that would be stuck in the middle. Eg my DS. He is around 2 years delayed with a spikely profile, diagnosed with ASC. He is yr6 with the social skills of a year 1, if that. His understandingbof the world is minimal . He can shower but not wipe his bum. He has an EHCP. There is no way in a million years he will cope in msinstream secondary but there's a good chance I will have to really fight to get him into a special unit because he's doesn't have 'behaviours'. He is really a SEN Betweener, and they are a really vulnetable group. I'm not sure he will ever move out.

Also, I'm the child of an ASC adult who was late diagnosed. She has lived with incorrect mental health labels and no support her whole life, and has never coped with life. Not being diagnosed doesn't mean life has been easy. She has hugely struggled her entire life. I had to try to learn social skills as an adult because as a child she didn't model them so I didn't learn them. It has consequences.

Also, this post is talking about ASC. Most 'low functioning' children have multiple other diagnoses as well, such as GDD, epilepsy, Prader-Willi,chromosomal deletion etc. The extent of these conditions compared to ASC depends on the child, and sometimes is added more on the balance of probabilites.

Just my opionions. I think we should support each other.

DS was diagnosed with Asperger's syndrome which basically meant ASD without a learning disability. Classic autism meant ASD with a learning disability.
Getting rid of these classifications and lumping everyone in together was completely ridiculous. It helps no one IMO.

Having Asperger's syndrome doesn't by any stretch mean you're fine, you're at higher risk of many other conditions for a start including personality disorders, eating disorders, PTSD and anxiety disorders. But what it does mean is that you don't have a learning disability.

Maskable/non maskable autism is completely unquantifiable and frankly ridiculous if you know anything at all about autism. DS can sometimes if he feels very comfortable mask quite well. If he is stressed, anxious and overwhelmed then that all goes out the window. Masking is not black and white or measurable.

I do miss the Asperger’s category. In my experience there were consistencies of presentation within this grouping that made it a useful distinction to make. Not perfect by any means!

Not everyone who masks has friends, been to uni, works full time, has a husband though...... that will be a very small minority who probably had a really good support system

Is this a joke? I know literally dozens of ASD people with high paying jobs. I live in a town with big medical research and development employers and a lot of their employees are on the spectrum. I've worked with technology companies, and finance and analytical companies, ditto.

My experience, married to one and meeting so many, is that the people on the spectrum masking and going to work every day far outnumber the ones with developmental difficulties.

Which is why an ASD diagnosis for every single person "on the spectrum" is actually almost completely useless.

The rest of your post defies comment!

Who judges the success of the masking? Will it be stress tested in various scenarios in an autism disguising equivalent of a tilt table or treadmill test?

Would you suggest similar distinctions for physical disabilities?

“Everyone masks.” Absolutely. But the effort an autistic person has to make to engage in everyday conversations is the equivalent of a neurotypical in a job interview.

My experience, married to one and meeting so many, is that the people on the spectrum masking and going to work every day far outnumber the ones with developmental difficulties.

You don’t meet the ones stuck at home though, do you?

DS is ‘high functioning’ to the extent that he doesn’t have an intellectual disability and he doesn’t have issues with speech. However, he will most likely never be able to live independently. You won’t meet him at work.

Look at the employment stats for autistic people maybe? Your experience is certainly not universal.

(Also how are you privy to the medical histories of so many acquaintances? Are you simply guessing whether some of these people are diagnosed or not?)

I don't believe that "the ones stuck at home" without having development issues number anywhere near those who went through mainstream school and on to work with little or no support. The welfare costs if that was true would swamp the country.

It's very, very clear if you mix with large numbers of people who work in the industries where autistic traits are an advantage how under-diagnosed being on the ASD spectrum (also those who are ADHD instead) is.

The whole "spectrum" thing is an unworkable, unhelpful nonsense.

IMO. You are welcome to hold an alternative opinion.

Totally. 💯

Two daughters of friends.

1. Autism, non verbal, that requires 2:1 care, cannot go out alone wver, very complex behaviour and aggression during meltdowns and frustration. Will NEVER live independently, very high care needs. Age 29. No friends. Will never work. Never had and never will have a relationship. Will live in residential care home.

1. Autism but masks so well you'd never spot any signs of Autism. University, 3rd year. Lives with other students, no care or support needs. Some small struggles with friendships but not more apparent than with non autistic individuals. Has boyfriend, has worked during studies. Expected good grades and great career. One day marriage and children. No care needs.

Both autistic. Both get PIP.

The underemployment/ unemployment figures for autism are well known. It’s 70-85%.

Yes as I’ve stated it appears to be the exertion that counts rather than the act of masking.

How has this been quantified, exactly? Is there some sort of norm referenced , objective scale that allows a neurodivergent to experience the level of effort a neurotypical engages in whilst masking?

Again it’s the homogenisation of “neurotypical” behaviour that I take issue with. Another term I cannot abide is “allistic” - that one sends shivers of rage down my spine…

I struggle to understand why tax payers should be making any payments to the second daughter.

Yeahhhhh.

The child banging his head off the wall in frustration or terror that he can’t communicate and his parent clearing smears off the wall every morning have MUCH EASIER lives and are so MUCH HAPPIER than checks notes the child who is able to play along and the parent who has to seek additional supports because the child’s needs aren’t apparent.

Jesus wept.

Araminta1003 · Today 18:37
** - I agree with you re schools, but it is also the “system”. A lot of problems happen at lunch time when mere lunch time supervisors are on duty, not trained teachers. A lot of autistic kids may actually cope with a full morning at school, lunch at home and one afternoon a week of a full day after lunch. Some parents would actually be able to facilitate this part time timetable. But the computer says no if you do not have a lot of paperwork in place to demand this kind of timetable. In some European countries plenty of young children only attend school for that amount of time anyway. It is unrealistic to expect an autistic child to attend school 8.50-3.15 pm every day and have lunch at school, with no down time. School staff do not have the flexibility to just easily adjust for said kids. Perhaps the SEND units everywhere would facilitate more of a calm down approach/part time etc. Kids learn best in short bursts anyway when they are feeling positive in their environment. The huge stress autistic kids can feel in school is not conducive to learning.

I am 52 diagnosed Autistic, Dyslexic, Dyspraxia, Hearing Loss Irlen's yet I managed to go to University and have a family. Regarding, an Autistic child not being able to cope with 8.50- 3.15(45) School day without downtime. What about my generation with Un-diagnosed Autism Dyslexia and Dyspraxia. We had to get on with it without any 'fuss' or allowances . What about my and other peoples struggles at Grammar School with terrible 'Grammar and Comprehension' skills and teachers telling you to write your English homework again because it was of a very poor standard. The point being some Autistic children need to get through the rigors of a full school day because 1. they are capable 2. it helps the most able develop coping strategies such as socialization and the ability to sort the problems out them self. My Adopted DS in year 10 has all the disabilities I have I will argue with the school when for bad 'behavior' they allow him time outs, when he knows exactly what he is doing.

Not all Autistic children need 'timeouts' some need help in presentation Comprehension, Grammar and confidence building, not allowances for playing the system !

Re write your Homework or have a Detention instead, despite probably doing your best at the first attempt. my Comprehension and Grammar goes up and down like a lift, however I take it on the chin that it this in part is linked to my disabilities. I do not attempt to ask for allowances or understanding I just accept my Grammar and Spelling can be poor.