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?

quite possibly! This was the article appearing on the FB autism pages though..

www.disabilityscoop.com/2016/10/14/autism-speaks-no-longer-cure/22884/

It's interesting to me that the overwhelming majority of people saying they wish they could cure autism are saying it's for their children, while the majority of actual autistic people are saying that while they want to treat their more debilitating symptoms they wouldn't actually want to 'cure' their autism.
Part of the problem with having difficulty communicating is that nobody listens properly when you try.

OP, your son has developmental delays and he's autistic. You're conflating them, but they're not the same thing. You might "cure" his autism, but it would almost certainly not cure both.
Life is always going to be harder for people with cognitive delays, whether those people are neurodiverse or neurotypical, and that sucks for everybody involved.

I have to wonder about the people going on about "having a full life" and "making life more liveable". By whose standards?
Most days I remember to feed myself and sleep - but I haven't had a paying job in over 20 years (I did raise a fairly fantastic kid in that time though). I used to volunteer shelving books at the library one hour a week, but it was too stressful and I had to stop. I have no friends who aren't family. Some days I'm barely verbal, other days I'm completely non-verbal - there are plenty of things to say in my head, I just can't get them out of my mouth. Other days I can't seem to stop talking, unfortunately I don't really know how to have a normal conversation so I say some pretty weird stuff. I panic - proper panic - when I have to make phone calls, or when people call me - even people I know. I can't do long range plans, I can't really do crowds, I don't like to be away from my home for too long (we're talking hours, not days) and some days it's the limit of my ability to take my dog outside.
But guess what? I'm living my life, and I'm much happier than I was when I was trying to pretend to be neurotypical.

Ninja, i think as we get older, we start give less of a fuck about what people think of us.

I know in my teens and early 20s i HATED being autistic, i hated the lack of friends and the isolation.

Now i'm mid 30s i've stopped caring what people think. I dress how i like (i wore a 50s dress, converse leggings and a hair band with cat ears on it to parents evening today, lol) i do what i like.. go to the cinema on my own, sit and read a book and speak to no-one while the kids are at school, go for lunch with my mom, sit in my car with a coffee and listen to the rain, drive around with heavy metal blasting out like a silly teenager, wear Irregular Choice shoes with Alice in Wonderland all over them to meetings at school.... and i do not give a single fuck about what anyone thinks.

This is me, wonderful, unapologetic me... but its taken time to get here, and i know some people never will, but accepting ourselves, for who we are, quirks and all, and having the world see we're happy as we are, is so important to helping the world to accept us too.

I have Asperger Syndrome and don't want a cure, neither do my adult children. They didn't when they were younger, either.

As for Autism Speaks, they don't speak for me and my family, never have, never will. I don't believe they will change. They will always regard us as a burden on society.

.... while the majority of actual autistic people are saying that while they want to treat their more debilitating symptoms they wouldn't actually want to 'cure' their autism

these are the adults with ASD who have a voice. Someone with low functioning ASD (non verbal with severe LDs) doesn't.

Someone in that position probably wouldn't be that much different if there are severe LDs to be honest.

But NinjaLeprechaun, Mumsnet can only provide a biased sample. There might be people here with ASD who wouldn't be interested in a cure, but what of the people with ASD who are low-functioning to the point that they're incapable of understanding their diagnosis or expressing their feelings? They can only be represented by their carers - you'll never see them here speaking on their own behalf.

aussie as I said in my previous post, life is always going to be harder for people with learning disabilities than for people without. This is going to be true whether they're autistic or not.

When people genuinely can't speak for themselves - and by 'speak' I do not mean verbalize - then all any of us can do is guess based on our own experience. And a neurotypical person can no more say that they understand what it's like to be autistic because X relative is autistic than a man can say he understands what it's like to be pregnant because his wife had a baby. To suggest otherwise is frankly insulting.

I don't wish my child to be 'normal' but I do wish that he didn't have the distress that he feels that causes him to repeatedly hurt himself and others.

Some of this is getting close to people wanting to 'cleanse' society of disability.

Just because someone is non verbal and has no awareness of autism doesn't mean they are of any less value than someone who does.

If they are very low functioning there are often other conditions present that significantly effect their functioning that would still be present even if autism could be 'cured'.

Is this debate ever had about other disabilities that similarly effect a child's functioning? Does anyone ever talk about a 'cure' for downs or a prenatal test for iq of below 70? There seems to be a level of hatred towards autism that just doesn't exist in the same way towards other conditions. No one talks of ds as being separate from who their child is, asd is no different in that respect.

A child who is non verbal and not aware they have autism wouldn't want a 'cure' if they don't know they have autism! They would want what everyone wants, loved and accepted for who they are, treated with dignity and compassion. Not their lives wished away on if only they didn't have asd. Which isn't even possible. Everyone wI think a child with disabilities would like their lives to be easier, and I suspect most if not all would work with doctors to find the right combination of Meds to relieve symptoms that cause distress and difficulty for their child. But don't wish them different, there's just no coming back from that.

I've worked with many low functioning adults. They were all pretty amazing people. One place I worked gave adults there own flats and just had 1:1 carers on site allways. One women who had been non verbal her whole life began to use words once moved in. She got a huge amount out of the therapeutic farm the charity owned nearby. Another man who had spent most of his life in bed or attacking people settled and began pointing to what he wanted & would get up from his chair to get his tea bag out when I made his tea for him. It may sound simple but it meant something to him. One man I worked with recently in a care home had only a couple of words but accessed the community independantly ever day with no problems. None of them needed cured because they didn't know anything different. They just needed accepted and cared for as they were. And all of whom had other distabilises present also so even if their autism was cured their functioning wouldn't change.

If the world was more accepting and accommodating for these people it would have a positive knock on effect for higher fuction ing kids like mine who are very much lost in the middle and drowning with their difficulties at present, very much dis - able from accessing life, violent, reactive, no ability to self regulate, but no consideration given because they have speech (that they can't use often) and because they are so anxious by any type of pressure that others judge them harshly & they pick up on that rejection & it crushes them. But who they are, just as they are, is amazing.

Local authorities often try to use the argument that there is no point in providing specialist asd provision for children who have learning difficulties as well because it won't make much difference. It has made a big difference to my son's quality of life.

"Someone in that position probably wouldn't be much different if there were severe LDs to be honest"

How would you know this?

Take away the autism, the LDs remain.

Autism in itself isn't a learning disability. It's a communication disability. DS2 has LDs and yes I'd like to make it easier for him to learn but it's not the autism that's doing that.

'just need to be accepted and cared for' is the argument used by some to deny people with severe learning difficulties, an education.

They can try it, Honking. In fact the LA did. I just added 'and educated' to the end of the sentence. Which in DS2's case is more life skills based now at secondary because that is what is appropriate and I agree. But I'm making sure he's still getting numeracy and literacy input and that he is being challenged and asked to work to the best of his ability.

I'm autistic.

Autism is not a 'disease' and the only 'cure' would be to terminate prior to full term. You cannot 'cure' a person's brain wiring without stripping out the person.

The difficulties that I experience are caused mainly by being forced to live in a neurotypical world. It's too loud, bright, crowded, nasty music, full of chemical smells which cause me physical pain, brash people who are rude and impatient, the list is endless. I take medication to survive, but I won't survive into old age.

I find that autistics are pretty much the bottom of the pile and I encounter widespread prejudice and hatred towards us. I come across this online as I don't interact with the outside world. We are treated like fools by even those close to us. Imagine how that feels. We're not stupid, we are fully aware that we're a nuisance, an irritation etc.

People who have poor self care ability make up only a very small proportion of those with autism. The rest of us just muddle by with virtually no support or help. We're not cute and lovable like many other people with disability, but we do have feelings, emotions and huge struggles.

When people talk of a 'cure' it means they are referring to autistics as a disease because autism is who we are. I'm not a disease, I'm a real person. I'm not subhuman, although others frequently regard us as such and waste no time in tellling us of this. The people who are too polite to be hostile keeps their mouths closed, but regard us as rd. We're an irritation at best.

The struggle we face goes back tens of thousands of years and is merely a continuation of ancient rivalries. The world was once ours, but then other types of people came and we became assimilated into the wider population. Why our genes persist, who knows, but they have made invaluable contributions to the human race and our type of brain is important. The hostility we encounter is deeply ingrained in the neurotypical mind and soul. You cannot comprehend the struggles we face.

Great post, help

Your post was very interesting, help , literally was quite impacting on me, as a NT that never had close contact to somebody with ASD.

I really do not understand your last paragraph through. It does not seem to make sense?

OfaFrenchmind2 there is some research emerging now that is linking neurodiversity to ancestors who have long died out. It has only just been discovered in the last few years that modern humans interbred with those ancestors, so we have inherited certain things from them. Depression, diabetes and Crohn's disease has also been linked along with some acquired immunity to certain infections.

There is a considerable amount of ongoing research into all aspects of these archaic humans and their lives, abilities etc. They have now managed to sequence their entire DNA from what I understand. A lot of information is now emerging.

Interestingly, the archaic humans to which I refer get just as bad a press as autistics.

That's massively taking it out of context and twisting it, I was talking about whether they would want a cure or not. If they don't have the awareNess to know they have autism then they won't want cured. But they will want trrated with care & compassion & dignity & respect the same way any person does no matter their circumstances, & imo accessing education that meets their need is part of accepting them and valuing them for who they are.

If you get something else from that you are completely missing the point