To think that actually, autism can be a bad thing and it's okay to say that?

[User172818289]

My DS (5) was diagnosed a year or so ago. He is almost completely non-verbal, not potty trained and not looking like he will be for a while if at all, has to go to a special school and doesn't really interact with anyone much. We have basically accepted that he is not going to be able to have a 'normal' life, although we do things to make his life enjoyable and easier!

New colleague at work, started at the beginning of September has a son about the same age as DS. She asked what school he went to, so I explained that he has autism and goes to a SS. She goes 'Well autism isn't a bad thing' and goes on to talk for about 20 minutes about her autistic brother, who has 2 degrees, a girlfriend, a reasonably normal sounding life I would say.

Of course we love DS with all our hearts but I can't help sometimes wishing he didn't have autism. I tried to say something along those lines to colleague, I said something about yeah but he can be challenging sometimes and she said that I shouldn't define him by a label and there are no limits on what he can do.

AIBU to think actually autism can be a bad thing? I am not trying to offend anyone on here, please feel free to take this down if anyone is offended.

its not fighting anyones corner by saying how shit it all is and how anyone positive about it just doesnt understand, and doesnt have real autism and doesnt understand the pain theyre going through living with their child.
Theyve wilfully misunderstood what the neurodiversity movement is actually about.
A few fuckin crackpots on a autistic facebook group refusing to admit its ever a disability, is not the same as "not being able to say that autism is actually bad"
Almost everyone thinks its terrible. A terrible shame. Mentally ill, look at their eyes, look at them using it as an excuse, ohh its all FASHIONABLE now isnt it, why would anyone seek a diagnosis for that, its just attention seeking, but..... if its a mother caring for autistic kids, then youre either felt very sorry for, or venerated as superwoman, or just assumed you should parent better. None of these feel good to me.

I just want my childrens needs to be seen as normal and OK as other childrens needs, because theyre quite normal for autism, and autism, is actually not that uncommon. We need a huge attitude shift in society. Pretending its all great is ridiculous. Pretending its all absolute shit is hurtful

I genuinely can't recall seeing a post here that says that either having autism, or caring for someone with autism, is a fun and painfree walk in the park. It can be incredibly difficult for all concerned - I don't think anyone's disputing that, the point is that calling an immutable part of some people's personality and processing "bad".

I can't think of a way it could be implemented, but how cool would it be to have a sticky post at the top of each thread basically describing the progress of the debate so far?

For example:

Page 5.

The consensus seems to be that autism is difficult for everyone involved. Disagreement appears to be with the way it's described - some people believe it's loaded and contributes to mental health issues in people with autism, however some people feel that it's an acceptable word to use and policing the language of people who are distressed and exhausted at caring for severely disabled children is not helpful or supportive. Discussion continues below...'

@Branleuse, I know they love him dearly and are immensely proud of him
. But he doesn't get included in any of their hobbies as he can't cope with it. He has respite almost every weekend and they go away. I always wondered why the other children were sent away. But didn't think it was tactful to ask!

I have an autism diagnosis. I really wish they hadn't done away with the Aspergers designation as that is what fits me.
I think it's ridiculous to take offense at people describing how hard it is to parent children with autism. I'm fully aware it was tough on my parents raising me. My childhood tantrums went on so long that they segued into my teenage ones and I spent more time screaming than sleeping for the first several years of my life. It's perfectly okay to say that would have been hard for them and they'd have preferred a non-distressed version of me.

Yes it's ridiculous to take offense at people describing how hard it is to parent children with autism.
But nobody's taking offence at people describing parenting autistic children. The argument moved on - you don't have to read the whole thread but skipping to the end and reading the last couple of pages should provide a decent update.

I have another way of thinking about the impairment/deficit part of the definition/diagnosis if anyone is still interested in that.

Impairment and deficit are evaluative terms, implying a measurement against a standard or norm or ideal. But what are they measured against in case of ASD? I suspect the answer is that different diagnoses, for different people are measured against different things.

One possibility is a deficit with respect to the person’s wellbeing. So the person is and behaves in such a way that their physical and mental wellbeing is negatively affected. Ideally here we need to listen to the individual and their views on their own wellbeing but it does become more complicated when dealing with individuals with comprehension and/or communication difficulties.

Another possibility is a deficit with respect to a goal such as leading a meaningful and fulfilled life. How we define this goal then becomes very relevant and as most things are defined by NTs, ASD viewpoints are likely to be overshadowed. This time we are judging the quality of ASD people’s lives on NT standards of meaning and fulfillment.

A third possibility is a deficit with respect to functioning in a context. The context here will be NT defined, so again ASD views on what it is to be, are lost. Also, ironically function may be impeded by the very context, so ASD people may have problems functioning exactly because they are expected to function in an NT world.

Can I ask, if the issue is vocabulary and you cant say that autism is 'bad', or whatever other negatively loaded term, what should parents/partners/autistic people say instead that will not contribute to aspies mh issues but will still convey the hardship?

It seems to me that either you use a word that convey the hardship and its seen as negative or you dont and you are in effect silencing part of the experience associated with autism.

I have to say I have never seen that in any other situation/illness.
If I have ME and say my Dh needs to support me/adjust around my needs, many people will come and tell me that I very likely to be hard to deal with and that supporting someone like me is hard work. Same with people with depression, bipolar etc...
Why is it such a taboo to say that with autism? Why is it different? Because the loaded wording and the effect on MH is the same when you have a chronic illness and need 'adjustements' etc... than if you have autism.

@Booboostwo - fantastically well deconstructed, all the thumbs up!

My 7 year old son has what is now called HFA, but used to be callled Aspergers.

He is in a mainstream primary school and top of the class, but when I pick him up, I can still see he is a little isolated, a little confused by playground games.He is very much looked after by a couple of extremely empathic older children who are aged about 9 or 10 and they keep an eye on him and give him hugs when he is down.(I know!Awesome kids and I have told their parents via the school). He speaks fluently,is kind and caring and is just so easy to parent.But do I wish he could relate to other kids a bit better?of course.

My youngest is 3 and (seems so far to be) NT, but is so challenging and aggressive that he takes up a LOT of my attention.Very bright, but very contrary (but equally loving, super smart and too clever for his own good ) but I spend a lot more of my time worryingabout him than my eldest.

Meanwhile, my niece with LF ASD is nearly 10 , non-verbal, not reliably toilet trained, constantly moving from school.She is still trying her hardest to learn her ABCs.She is an unhappy, lonely little girl.I would take her ASD away in a heartbeat if I could.

In my experience it is far from being just "a few crackpots."

I agree though that there are problems on the other side though, including shaming people for seeking a diagnosis.

xpost @Booboostwo

You are right that people are evaluated against NT, able people. Because that's the norm, what you can see the most around you. Just like GPs use a set of specific values to evaluate blood tests.
This is the case for every single impairement.

I have ME and my ability to do things wo being exhausted is measured against someone who is able.
Someone who has some neurological issue will be evaluated against people with no neuroligical disorder.

Im not sure you can get away from that because you need some sort of benchmark. Otherwise no one woud ever be diagnosed with an impairement or everyone could

I feel a paper coming on, can you tell finitemonkeys ?

My adult brother is non verbal. He lives with my Mum and the house has metal bars on all of the doors and windows. He self harms, his hands are often raw where he bites them. He gets very upset and scared regularly.

He can't 'achieve anything he wants to' and my Mum has fuck all friends and a shit quality of life. I'd have had to set her straight and not in a kindly way either.

so ASD people may have problems functioning exactly because they are expected to function in an NT world.
Is there any possibility for ASD people to function in another world than the NT world?

HeyNotInMyName there is actually a massive amount of literature on what the standard should be and how to draw distinctions, especially for new and emerging areas. This includes the very idea of the standard, e.g. biological, functional, objective, subjective, against a norm, against an ideal, etc. as well as classification of specific issues, e.g. I had a colleague who was an Aristotelian logician and was helping a group of medics classify and name newly discovered lesions because the name itself, e.g. tumor or lesion, had massive implication for everyone’s understanding of what it was.

HeyNotInMyName is an ASD world in which NTs have to adjust and fit in so difficult to imagine even as a possibility?

Nope but what is telling you that NTs would find any easier to adapt to ASD world than ASD to adapt to the NT world? Remembering that NT isnt an homegenous group.

And is it realistic to expect 90% of people to live in the world live in by 10% of people? What about other neurodiverse people who might not be confortable either the NT world or the ASD world?

There would be no such thing as an “asd world” though because you couldn’t find one world that would need to needs of everyone with autism!

Ds can’t access most autism groups because he can’t cope with the noise and people!

What I am trying to get at is that it cannot be an either or. You cant just assume that all NT have to adjust to the ASD world. It has to be a give and take, a compromise. And it has to take into account a lot of other people with their own issues/impairments etc...

Fwiw in my own relationship, I have tried to be the NT that join in the ASD world. I failed miserably and tbh I think it created more problems than it solved. In part because its actually extremely hard to separate the autism from the person. And the person might or might not be a nice person/a twat/abusive/just completely lost and overwhelemed.

Very good point @Sirzy

There would be no such thing as an “asd world” though because you couldn’t find one world that would need to needs of everyone with autism!

Ds can’t access most autism groups because he can’t cope with the noise and people!

I have this problem with "relaxed performances" in theatres. I think that they're a wonderful thing and that there should be more of them, but I wince when I hear people saying that every performance should be relaxed because I can't cope with that additional noise. It'd make the theatre inaccessible for me.

On that note I'm about to contact local theatres to make a small(ish) concession to make it more accessible to some people with autism.

Very true Sirzy ,ds struggle s with noise too ,but he shouts very loudly very frequently particularly when he's over excited which upsets fellow children in his special school , around 70% have an Asd diagnosis ,and this is just a small example an Asd world would be too hard because what meets the needs of one person with Asd,wouldn't meet the needs of another

It’s not a practical point, I am not calling for an ASD world (although if there were one I don’t see why it couldn’t be as diverse as the NT world and if NT people struggled to adjust I don’t see this as being a greater struggle than the one ASD people have trying to adjust to an NT world). It’s a conceptual point, that ASD people are defined against an Nt standard.

Look at it this way. Is deafness a disability? In a deaf dominated world, where sign language is the only language and all inputs were visual, sensory, etc but never auditory, I don’t see much reason for labeling deafness a disability. Would some sighted people struggle to function in such a world? Yes, and that would make them disabled in that context. Now also call deafness bad, do you see how that is unfair when the very standard against which deafness is measured means it will fail?

Again this doesn’t apply to all ASD people, see my points above.

@HeyNotInMyName

*Nope but what is telling you that NTs would find any easier to adapt to ASD world than ASD to adapt to the NT world? Remembering that NT isnt an homegenous group.

*And is it realistic to expect 90% of people to live in the world live in by 10% of people? What about other neurodiverse people who might not be confortable either the NT world or the ASD world?

I think you've taken this too literally. But the fact that you can't conceive of what it's like to live in an ASD world and refuse to countenance discussing it, demonstrates how alienating it can be living in an NT world when you're not NT.

A lot of the problems that are associated with autism isn't actually caused by the autism. People with autism have a much lower life expectancy than NT's. Not because of inherent ill-health (apart from the gut issues) but because they're hugely more likely to suffer with extreme stress, depression, anxiety, substance abuse and as a result are prone to suicide, overdoses, violence, self-harming or destructive behaviours. We're also far more likely to get manipulated and scammed by conmen and be targets for theft or fraud. Autistic girls are significantly more likely to get raped or sexually abused, experience domestic violence and have abusive relationships.

However, none of the above are direct symptoms of ASD, they're a result of having to navigate an NT world with ASD. Put extremely bluntly - we die younger because of our vulnerabilities and subsequent treatment at the hands of unscrupulous NT's, and low self-esteem engendered by the daily difficulty of trying to force yourself into following NT patterns to cope with it and constantly failing.

There's no protections put in place for those of us who aren't bad enough to live in permanent care and can only (sub)adequately get by with regular breakdowns in the processing that can leave us penniless, unemployed and homeless.

The default NT social structure is the largest slice in the pie-chart of "why autistic people die early". Living in a mild state of panic is painful, anxiety inducing and exhausting but it's still an inherent part of my personality and I don't know who I'd be without it. So, telling us that our life is going to be shit, that our autism is just bad and we're severely limited would be like telling a morbidly obese woman that she's fat. We know. We live it and the only option is to carry on, get whatever positives you can from the autism and get the most enjoyment you can out of daily life.

Being positive about some of the aspects of autism isn't a choice for us, it's a survival mechanism. We can talk about how it's tough but making us feel that we're a burden, we're hard work and there is absolutely no positives ever to having autism is hard to hear and just adds to the damage experienced by the children you're trying to protect.

i don’t know any parents who just wang on about how difficult life is though.
In real life I don’t talk to or about my son in anyway other than positive happy and encouraging . Any sadness I have - or tiredness or fear - is for me or, when I need support, on line .

Parenting a child with asd can be isolating and I doubt I’m unusual in rarely discussing my son in any way with strangers or friends - especially if they may judge or criticise jinx
So being able to discuss the fears, the difficulties and the problems on line is important.

When that gets criticised too that pins down some really vulnerable people, mostly women, who are working very hard.
I wouldn’t have survived the early years without on line support and where would that have left my son.
Alongside guilt of course - our constant companion