ASD…. Should there be another name for a more ‘severe’ version.

[iminvestednow]

Please forgive me as I’m new to this, I have a son with Autism. This is his only diagnosis. He is a beautiful, kind and wonderful son.

DS struggles greatly, although we have made fantastic progress in so many areas he will still never lead a ‘normal life’. He has no concept of friends, money or any social convention, he will need help to get by forever, he is extremely vulnerable.

I’ve noticed recently (great that people are more accepting) a lot of people saying, I’ve been recently diagnosed with autism aged 40 and it’s helped me so much. I think it’s great that people are getting support but does it dilute what severe autism is? Most of these people are competent fully functioning members of society and will never need the kind of help my son does. Should there another term to differentiate?

Who has done that though?

All of the autistic people who have posted on this thread have emphasised that it is a broad spectrum and affects people hugely differently, to different extents and across different capacities. People have simply been trying to explain that because it is a spectrum, you can't accurately describe/ split autistic people into "levels" or "gradings" to show the ways that individual is affected because many people won't fit into such boxes.

Is this what you think masking is? Dear God.

You asked a question about whether someone was lucky that they could mask. Then said you didn't know, personally.

I answered your question and told you that no, they are not "lucky". Masking is for the benefit of NT people, and has been shown by research to cause lots of mental health damage to autistic people.

Don't forget the part where we're selfishly taking resources away.

OK, then, what would my DS look like if he were able to mask?
Seeing as I've been told the children who struggle with school/demands and DON'T react and hurt teachers/children are the ones who are masking, and DS struggles with school/demands in general, and reacts badly?
I mean, since he does react, I just assumed he wasn't masking and he couldn't.

Oh, and I'm afraid being able to mask isn't the panacea you think it is to avoid abuse. I am very goid at masking. My parents abused me. Most autistic people who can mask can only do so some of the time due to the toll it takes. Most do not mask in their own homes because it's impossible to keep it up 24/7, as anybody who knows anything about it will tell you.

OK, then, what would my DS look like if he were able to mask?

How can any of us tell you that?! We've never met him. Autistic people are all different - hence the spectrum - and have different levels of masking ability. Plus some sections of the spectrum are easier to mask than others.

I feel this conversation is not productive now. You are attacking people for no reason and not prepared to listen to anyone else's experience. How ironic.

The coke bottle analogy is the best one to explain masking I think.

throughout the day each little pressure, or annoyance or overwhelming situation then the bottle gets shaked a little bit. Throughout the day the bottle gets shaken and shaken.

then when they are somewhere safe (normally home but other places and people can be safe places of course) the lid is taken off and all of that days pressure releases in one go.

The thing is I have Asperger's (so yes autism), and masking is of benefit to me

It's exhausting a lot of the time but it helps me through a lot of stuff that I need it for! And I'm grateful I have the ability to mask

What a lot of literate people with autism don't seem to understand is there are severely disabled autistic people out there who can't mask. They don't even have the option. Don't know what it is. Don't have the ability to do it - in nappies, can't speak or communicate that they want a drink, they're hurting somewhere, they're hungry. Nothing.

They can't mask. So I'm pretty grateful I can mask as it comes in handy, even if it is largely for other peoples benefit. It sure serves me well too

Why wouldn't we know that there is people who have larger struggles with autism and often Habe other learning diberculties along side it.
That's an odd thing to say.

I answered your question and told you that no, they are not "lucky". Masking is for the benefit of NT people, and has been shown by research to cause lots of mental health damage to autistic people.

And told me I should be ashamed of myself for even asking?

Also, how would we know if nonverbal adults with learning disabilities were also masking?

And how could we compare the mental health effects of masking vs not masking if everyone does it? When we compare the effectiveness of, say, a therapy that we've found out doesn't work very well (e.g. ABA) to either other types of therapy (e.g. occupational therapy) or no therapy at all, we start by comparing groups that use/don't use the therapy. But if everyone does it, how can we know what life would be like without it?

These are mainly philosophical questions but AFAICS most of the research has been done by asking "is it tiring to mask" without trying to find out what would happen if nobody/that particular individual never did it, and would that lead to better mental health outcomes, and what else would need to change for that to happen.

How can any of us tell you that?! We've never met him. Autistic people are all different - hence the spectrum - and have different levels of masking ability. Plus some sections of the spectrum are easier to mask than others.

So how can you possibly tell me that "being able to mask" for my DS wouldn't mean "being able to stop reacting aggressively and excessively in some situations where he's at risk of harm due to his aggressive, excessive reactions"? If it looks different for everyone?

@Sirzy that's my understanding, too. But DS can't bottle anything up - which is why I say he doesn't mask/doesn't know how to. He just reacts immediately and aggressively.

Out of interest do you think it benefits you as an individual or you as a person trying to fit societal norms?

I think that's thd point tho. The people with autism on this thread are able to communicate and articulate.

Just because someone has autism doesn't meant that they are correct about all things autism related, they're is a huge group of people with autism who cannot articulate or understand te arguments going on in this thread.

You did post:-

"You should be so ashamed of these comments. This is one reason so many autistic people feel cut off from what little support is available: many support groups have been completely taken over by NT parents of autistic children who don't really grasp the different presentations of autism and what is underlying them, especially if their own child doesn't mask, and then start telling autistic people about their non-professional judgement on that autistic person's experience rather than listening them to get some insight into what it can be like to actually be autistic.".

They don't need to listen to someone tell what being actually autistic is like especially when that person has no idea what having profound autism is like.

If you look at groups such an Autism Inclusivity it isn't NT parents taking over....

So how can you possibly tell me that "being able to mask" for my DS wouldn't mean "being able to stop reacting aggressively and excessively in some situations where he's at risk of harm due to his aggressive, excessive reactions"? If it looks different for everyone?

I didn't. You asked what his behaviour would look like if he didn't mask. I said none of us could possibly tell you that. Where did I say his behaviour would not be a certain way? I simply said that surely you know a stranger who has never met him can't possibly make any judgement on a hypothetical question about a person they have never met?

"it's tiring to mask"

Not talking about it being "tiring". I'm talking about the academic studies showing it causes severe mental health problems for many people.

And told me I should be ashamed of myself for even asking?

I didn't say you should be ashamed of yourself for asking if people are "lucky" they can mask. I simply answered your question by saying no, it isn't lucky.

The "you should be ashamed" comment related to the parts of your post where you attacked a PP who had just disclosed to you that they grew up with bullying and abuse. Not very nice.

I have to say this is intriguing. So you mask for the benefit of 'NT people", not you at all? How does you masking benefit me? What would happen to me if you didn't mask?

Not a you personally but a you general.
To help you feel at ease and to be comfortable around me. Not to alarm you.

I think it is not appropriate to have levels of severe etc. everyone's autism is different.

Lots of people with Autism have other disabilities which may make them seem more severe.

Thanks for your reply. It's interesting that you don't feel there is any benefit to you in having people be at ease and comfortable around you.

No I see the benifit in making NT people calm and feeling "normal' is to not be made fun off, attached physically and verbally. Not to be made to feel werid and targeted.

But hey.

Attacked not attached

There used to be a name for it - Classic Kanners Autism. It’s the diagnosis my 31 year old son has and the one I still use. I can’t be doing with the new terms.

Oh ok, apologies. I thought you were the poster that said that they did it for NT peoples benefit not their own and that there was nothing 'lucky' about being able to mask.

I'm sorry that you have had those experiences.

I much prefer the old term - Classic Kanners Autism.

My son is now 31. Requires 2-1 round the clock care and as time goes by he has an additional diagnosis of various things added to his diagnosis. The last being bi-polar disorder that joins his epilepsy and Tourette’s.