To think that actually, some of us would like a cure?

[FedupofbeingtoldIcantusemyname]

I was reading an article that popped up on FB the other day that stated that there are people working on some kind of 'cure' for ASD, some sort of medication I think.

Every single one of the comments on the article were saying that it was offensive to those with ASD, that it isn't a disease and doesn't need to be 'cured', that it was disgusting that they were even attempting to eradicate or 'fix' it.

I couldn't help disagreeing. While I don't have ASD myself, I do have a lot of experience with it as DN has it severely. I understand that a lot of people with ASD have full lives, relationships, jobs and so on, some feel that it is a part of their personality and as such cannot be 'removed' without them losing a bit of themselves. I sympathise with that. Obviously if a medication became available that would 'cure' ASD, presumably they could choose not to take it?

But for some, including DN, there are a lot of things in life that they very likely won't experience because of the ASD. DN is still doubly incontinent at age 10, he may never be fully toilet trained. He will probably never get married or have children. He will almost certainly never have a job or go to university. He will never even live independantly as it would be too dangerous for him. So, for him, if a 'cure' was available, I would want him to have it, for his sake rather than anyone else's.

Aibu to think that, while ASD is not a 'disease' that needs to be cured, if there was something available for DN that would take away all the symptoms, all the sensory issues, and just allow him to function in the world as everyone else does, I would want him to have it? Or am I an uncaring monster for thinking that?

Bravo Poltergoose

Carly Fleischmann and Channing Tatum in case anyone hasn't seen it

And should probably point out at 10 or 15 I didn't know I was autistic.

Society and the way my sons are perceived won't take their distress away when they know they hear things more acutely or that the smell of something drives them batty. I watched ds1 deteriorate from 11 onwards until he quite literally lost his mind. That was his autism not him. It's not about judging him that life is all I have known (I had him at 18)

But society could find ways of taking away these triggering smells, they could reject perfumes etc & ear defenders could be everywhere available for everyone to use so that no one would be 'different' for doing so. But society doesn't see thins from others perspectives, they don't see their resoonsiblity to the vulnerable just all their rights to do as they please.

My psychologist would have me (and presumably her other patients, and carers of her patients) that autism is only a tiny part of you, just like having blue eyes.

To start off with I felt yet again that I was getting life wrong, as this ASD was having far more of an impact on everything than having blue eyes ever did, and it shouldn't, and felt extra shit, because I should be able to beat this tiny part of my personality.

Having read many blogs by autistic people, and cautiously become part of the community, I realise this advice was wrong. I am autistic, it affects everything I do, and that's fine. I can now be me and finally learn who I am, rather than trying to continue suppressing a major part of me which ultimately made me ill, not being able to leave the house, barely able to take care of myself, let alone my DC. Life is much better now for accepting that I"m not NT and that there's no point in trying.

But wannabe if society were more understanding then maybe some of the noise and smell triggers would be removed! I mean, hand dryers in toilets, WHY?

Bishop we arguing the same point, I think you have misunderstood something as I don't think recognising that asd is part of the person is a negative, it's positive and freeing

^Always, I appriciate what you are saying and for probably a large number of ASD children you would be correct and I would be looking at this whole issue with a completely different viewpoint.

However, given that I only have my experience to go on I can say that DN has absolutely no idea that he has ASD, what it means, or the fact that he is different. He has no disability pride, and would not understand what it was if you tried to explain it to him or met anyone else who had it. He doesn't know if anyone around him thinks of him as different, or if they would prefer him any other way. He just does not have that level of comprehension. I know many might say 'yes, but how do you know if he can't communicate with you?'. Trust me, I just know, I've known him his whole life.

Our wonderful local libary has a huge disabled toilets, massive space, high ceilings, open window up high to remove smells, and towels not hand driers

Much more accessable for my kids

I watched a video that compared UK schools to Finnish schools, the UK schools had distracting lay bright colour schemes, displays galore that hurt the eyes and overload the senses, the Finnish schools were plain blank colours, no displays, everything appeared calm.
It is doable to change ingrained ways, but schools have some sort of display fetish - the more the merrier - when I'm pretty sure that after a few days NT children won't even see them, as they will have blended into the background, whilst autistic and sensory children will still have jarring brains from them sitting there, taking up as many walls as they possibly can, and ceilings too, if the teacher is inventive enough.

Society should be geared up to suit everyone, it wouldn't be that difficult, it just requires thought from people who generally have an "I'm alright Jack" attitude, who are too selfish to think beyond themselves and their needs.

Is this about a cure though, or about testing which will identify ASD and therefore lead to pregnancies being terminated?

Always yes I know - I was just clarifying as initially it looked like you thought me believing it to be intrinsic was a bad thing. Caught up now

i like this quote from Temple Grandin

If there was a cure I would give everything I own for it. I feel no shame for saying that. I do not see autism as difference I see it as a debilitating condition.

The deaf & blind communities often have a lot of disability pride. Their experience if life is not called into question. The value of the strength they develope & the people they become from experiencing the world in a different way is not negated or dissmissed. & that's before considering how different brain wiring in the areas that contribute to personality effect those of us who are nd.

If parents wish their child normal or cured or fixed will likely influence the child to feel the same, which risks permenantly damaging their sense of self & influencing them to feel asd is the thing that is 'wrong' with them. Or they could of course grow up to do what I did & hate the people who felt that way & cut them out for good. Or parents can accept the child just as they are, & if the child grows up to feel their asd isn't an intrinsic part of them atleast they do so freely having allways been accepted fully either way. No one would admit to wishing their child wasn't gays or mixed race or female or any other protected characteristic, they would accept that any struggles their child faced based on this was the fault of society. But somehow disabilities, especially asd, is not quite as 'protected' as other characteristics. Which is very sad. And imo is based mostly on how uncomfortable society is with people who have disabilities, rather than valuing the person first and formost as of equal value, just the way they are.

PigPig that video made me both laugh and (a little bit) cry! Love the honesty in her words and actions.
I have ADHD. Medication helps with focus enormously but doesn't make me feel like I'm 'not me'. I know this isn't true for everyone though; some can't tolerate it for exactly that reason.
I haven't heard of anything that helps with ASD (other than environmental changes or therapies) but would have thought any medication would have similarly different effects in different people.

of course these illnesses were around 30 years ago.

I'm 35 my brother is 39 we're both autistic.. so yep.. they existed!

I don't want a cure, and my reason is that for all 3 of us (ds included, he has asd/adhd/spd/dcd) our Autism is an intrinsic part of our personality.. its how we're wired, its WHO we are.

The only thing i would change is the Sensory Processing Disorder, i do wish there was a way to effectively make the world less 'loud' for us to experience as that is a massive part of why my DB and DS struggle to get on in life.

The other stuff.. the executive functioning, scripting, echolalia, impulsiveness, i think those are more about current societies unwillingness to adapt.

Many people with adhd find the right combo of Meds make sensory impact easier to cope with & less sensory over load as a result. Maybe adhd Meds should be used off licence more than they are now

Autism Speaks just re-did their mission statement, they've taken out the search for a cure thing and said they're refocusing on trying to help people with ASD to live their lives.

I'm reserving judgement, but it might be a little chink in the fight against the move towards eugenics.