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.

This. My friends son is in residential care during the week. Turns 18 today. Non verbal, doesn't seem ti have a clue what's going on around him, always fidgeting with his toy. Will have to be told to go to the bathroom regularly or he will wet himself. Needs to be put asleep to go to the dentist. Can't explain anything when he's hurting physically/mentally- just makes complaining sounds. It's heart breaking.

My autistic 15 y old DS can walk by himself to school where he's in a special group for disabled children with a 1:1. He doesn't wet himself and doesn't have a low iq but not high either. He wouldn't be able to follow "normal" schooling but can read, write and count like a 10 year old. He will never go to university ofcourse like your son @Noras because he doesn't have the capacity but also no motivation to learn anything. He's got heavy OCD so takes antidepressants to help with anxiety and medication in the evening to help him calm down or he will have aggressive outbursts. I hope he will be able to work and live in adapted suported living.

Another friend has a daughter who is ASD and who struggles with mh. She's brillant academically and does have a few friends. She can go on and live independently and be succesful in a variety of fields (academics/science etc).

You can't compare these three children. They all have their struggles but ofcourse I can't complain to friend number 1. And when friend number 2 complains I do listen and try to be empathetic but at the same time I'm so envious. I wish my son could be so well adjusted as her daughter and have a future that doesn't mean parental and other support for the rest of his life. Don't have any answers really. It's like when someone in the UK is pleading poverty because they can't get the christmas gift their child wants at the same time as children are dying of malnutrition in other countries. I mean we all have struggles and someone will always be worse off than yourself. Doesn't mean your struggle isn't real.

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.

@GlomOfNit I fit the description of middle-aged professional with a family (self-diagnosed for now even!) - I couldn't agree with you more - I have nothing in common with your son. Which is why the umbrella diagnosis of autism is neither helpful to you or to me. Categorisation is desperately needed so EVERYONE can feel validated.

It’s not a competition.

Thank you for this. I've never seen the 3 categories of the dsm before. It's clear that my ds is in the moderate autistic category.

Their Needs aren’t met in every facet of life- NHS( all tiers), education etc. And yes I’ve battled tirelessly whilst caring for said children.

You deciding you aren’t disabled doesn’t mean you get to dictate to others re disability. My kids and I were all diagnosed by the NHS with several ND and are very much disabled by then. That doesn’t mean we don’t carry on battling with life and trying to become as independent as we can .

How do they undermine it?
People without support needs are not using resources. Diagnosis does not automatically ensure people are getting support (even those who need it). How does one person getting a diagnosis undermine another person getting support?

What about the natural range of variation in humans?

What about it?
The natural variation of normal serum ferritin levels is 13-150 Ng/mL. Levels below 13 are still classified as anaemia. Same with autism. There are diagnostic criteria which looks at specific functional patterns which sit outside the "normal variation". We are not all on the spectrum. One can't be "a bit autistic". You either meet the criteria or you don't.

In fact, "classifying" autism has the exact opposite effect of removing support based on need. Me saying "I have autism nr 37" is absolutely meaningless. Much more helpful to say, I can do X independently, I need support around Y.

In any case, the OP wants more money to go towards research and cure. Fair enough. Bickering about technicalities of classification and who's got it worse isn't going to achieve that.

It Isn’t just the “low care needs” parents who don’t want it split, many professionals don’t either because they acknowledge the caveat in the tool itself when it says it needs to be recognised that needs can change throughout life. So you may start off with a “low care needs” child who then changes as regards care needs. This has happened big time to us and we’ve been told is common. Said parents would be then going back to an already overwhelmed system with massive waiting lists to ask for another assessment as their child no longer fits the category they were first given which may well change again. As I said 2 of my kids have fitted all

Sorry to persevere but if you have the reports then then you can apply for an EHCP. It is a battle I know but if they don’t get what you think is required you can go to a Tribunal. Have you gone to Tribunal? There are agencies to help eg SOSSEN.

Social care is more of a challenge to get but it will be granted more readily in adulthood but they should be involved for transitions.

Who is trying to dictate - if anything better categorising should make accessing support easier.

My DS was diagnosed with Aspergers before the DSM merged all the diagnoses into ASD. He has significant struggles but will be able to live independently and hold down a job. I never understood how he could suddenly be in the same category as my friend's nonverbal child who will have to be cared for for his entire life and will never have a job or be able to have an intimate relationship. I understand that the previous system wasn't working and some autistic people weren't getting the support they needed because others assumed "high-functioning" meant they didn't need help. But removing all the other descriptors has made it confusing.

but how do you categorise? What do these neat little boxes look like?

ds is 16. He is able to attend mainstream school with full time 1-1 and a lot of support. He will likely pass most GCSEs and has an encyclopaedic knowledge of certain History topics.

he is also unable to care for himself. Can’t be left alone at all. Other than going to school he struggles to leave the house. He is tube fed for most of his nutrition. He can’t speak to anyone outside of his small safe circle. He will never live independently.

which box does he get squashed into? Like most with an autism diagnosis he has a spiky profile and what people see on the outside isn’t a picture of what life is actually like.

I completely agree with you OP. I have thought this for a while but it does seem to anger some people.

No categorising would make it 100x worse as it would delay things, divert professionals into hours of extra diagnosis call backs and be 1 more hoop to jump though. Got an EHCP for 1, too late for the others.

Oh no. How terrible for you.
What can we do to make you feel better about it? Should we all take one for the team and cope with the overhead lights because someone out there is unable to toilet independently? Or...and this is just a crazy idea...maybe you can consider that nobody needs to have glaring office lights when it's daylight outside and flipping a light switch off isn't exactly causing you any hardship except for offending you ideologically.

Do you walk 10 miles to get a drink of water because there is a poor family in Africa who needs to do it daily? For solidarity. Or do you enjoy the privilege that the current legislation affords you in having clean running water in the workplace. Well, the current legislation affords me a privilege to ask for reasonable adjustments in the workplace based on my needs.

I'm not sure what the media has to do with it.

Thanks

that is exactly this. I hate ASD and I want to see money spent to stop it.

I don’t just want adaptations to society.

I hate the disorder because of the distress it causes and sorry I can’t embrace it as people being different and society needs to change etc. we don’t say that about schizophrenia eg we all need to change to meet the needs of people with schizophrenia. No we want it cured. Why is it so wrong to not want it more carefully categorised and cured.

I hate to hear my son rant and hear his distress. I dislike his talk of wanting to die.

i don’t understand why women aren’t identified with a higher genetic likelihood of ASD and given the CMV vaccine or given better maternity care.

I hate the whole social media stuff making out it’s some fashion trend.

There are three levels. I am diagnosed with level 1 autism, borderline level 2

YANBU it’s bloody hard situation that you are describing and exhausting and the future is frightening because your DSvis codependent on the package of care he has.

YABU to feel it’s relevant or eroding concern. In general thanks to the government whipping up fears around PIP ‘Scroungers’ ableism seems ever more prevalent.

Also YABU to feel that other people who have struggled with different issues and had no help with those all their life or whose disabled kids are on the surface more independent but struggle with other things are having an easier time or are taking something away from you by their existence.

It’s not a race to the bottom. Need is need and it’s important that it’s recognised in all its forms because they all in different ways stop ‘normal’ functioning, ie the level that society is set up for. Which nobody is changing to be more accommodating.

Confusing for who?

Some people can't function at all though ,tbh I would be happy for my sons autism diagnosis to be taken away completely and have a totally new diagnosis as the diagnosis is so broad it doesn't really mean anything.

This is a great analogy

In the UK they don’t use levels from the DSM 5. My son’s letter said he will struggle with day to day life and need support.

Exactly this- for good reason!

So much of what you have said resonates with me so deeply. If it helps at all, I know you're not pretending - I feel exactly the same.

I will disagree with you on some points. We do very much need to adapt as a society. Regardless of cure. Some conditions are not curable, not now, possibly not in the future. And social model of disability suggests that we are disabled by our environment more so than by our condition. For example, wheelchair users - amputation is not curable, neither is paralysis. But we have disabled access spaces which means wheelchair users can participate in society on a (more) equal footing with someone who is ambulatory.
If we didn't need to adapt as a society, there would not be any support for your son to go to uni. He would be institutionalised until the cure was found.
Schizophrenia is also not curable. It's managed with medication. But adaptations allowed many people with schizophrenia to function in society rather than being shipped off to a remote mental asylum.
I'm sure that's not the future you want for your son either. So it's not a binary choice to find cure or adapt. It's, ideally, both with adaptations making the most tangible difference to people right this moment.

I agree. I take offence to the "super power" term, or those who say I wouldn't change it for the world...
Yes I would change my sons needs 100% if I could and no I do not describe them as his super power. What happens when they reach adult hood, it discounts their understanding of their disability.

I was diagnosed in England