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

(214 Posts)
FedupofbeingtoldIcantusemyname Tue 18-Oct-16 21:54:58

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?

Toffeelatteplease Tue 18-Oct-16 21:57:46

I don't think you are being unreasonable at all.

but I fear you might be ripped to shreds for saying so

UmbongoUnchained Tue 18-Oct-16 22:00:52

Absolutely. I'd love to be able to go outside without noise cancelling headphones.

noblegiraffe Tue 18-Oct-16 22:01:48

Loads of people give medication to kids with ADHD, to help them function in the real world. I wouldn't see this as any different.

I think some people have a cosy view of ASD as 'a bit quirky, like Sheldon off Big Bang Theory'.

MollyRedskirts Tue 18-Oct-16 22:03:25

I have a DS diagnosed with ASD and although I hate the high/low functioning descriptors, he is high functioning. I absolutely understand and empathise with what you're saying, and I haven't had to deal with half the things you have.

Would I take away the sensory issues? Yes. Would I take away the utter social cluelessness that leads to pain and upset? Yes.

Wanting to change the things that cause distress for your child is NOT the same as wanting to change your child, but I fear it's a distinction many won't get.

FedupofbeingtoldIcantusemyname Tue 18-Oct-16 22:05:58

I think you are right and that is part of the problem giraffe, people don't really see the severe end of the scale, or they don't see the issues that it can cause at its worst. DN has recently gone through a poo smearing faze. Its really difficult for the whole family sad

Pestilence13610 Tue 18-Oct-16 22:06:05

If a genuine, peer reviewed cure was invented I don't think people would reject it.
There have been so many snake oil sellers touting cures and causes that most people are sick to death of cures that often end up being as insulting as cures for homosexuality.
Truthfully there are few magic cures in life, many have awful side effects.

MollyRedskirts Tue 18-Oct-16 22:06:50

I should also add that I strongly suspect I'm on the spectrum, but I haven't been formally diagnosed.

If I could cure my shutdowns and my sensory stuff, I would in a heartbeat. I might even be able to cope with employment and raising a family, at the same time!

originalusernamefail Tue 18-Oct-16 22:13:41

My DS is 3 and currently non-verbal and being assessed for ASD. I would do anything to hear his thoughts and his voice. He finds people singing / laughing incredibly distressing and I would take that away in a heartbeat if I could. I don't think it would change him to take away these sources of distress. YANBU.

butterfliesandzebras Tue 18-Oct-16 22:19:33

Yambu - People with asd are more likely to get depressed/suicidal/etc. So I'm sure there are many who would love a cure.

It's not like people would be forced to have the cure even if there was one, people would just have the choice.

Sugarlightly Tue 18-Oct-16 22:19:50

There are people that give bleach enemas to children as a cure for autism (among other things) - this is purely a result of desperate parents wishing for a cure.

I agree with pp that if an actual, genuine cure or therapy came about it wouldn't be right to deny people it. But some of the damage along the way, looking for a cure, is not right.

PersianCatLady Tue 18-Oct-16 22:27:08

This argument seems similar to the reaction that some people have when discussing deafness and the use of cochlear implants.

TheSnorkMaidenReturns Tue 18-Oct-16 22:27:55

I do see the severe end of the spectrum at work and I do get some of what you are saying FedUp.

But as a family we are (nearly) all 'high functioning' Aspies and we are definitely special-er than NT folk and don't want to be cured. Though, Molly, it's true, I would like to cut out some of the sensory stuff. I don't think our way of thinking is 'wrong' though, just different, and as a society we need all sorts of different brains.

This is one of the problems of the whole spectrum having the essentially the same diagnosis. HF AS just means you are autistic but of normal or above intelligence, IIRC, and the actual diagnosis doesn't begin to describe the actual issues that individuals have in their everyday lives, whether verbal or not, or with a LD or not.

Toffeelatteplease I'm not going to 'rip' anyone 'to shreds' but I am entitled to my own view about autism, thank you. It's not a constructive thing to say before anyone has even replied!

ProudAS Tue 18-Oct-16 22:48:23

I have autism and it's very much a part of me. I have great attention to detail because of it.

If a treatment were to make the difficulties that come with it less of a problem then maybe yes I'd go for it. If it was going to mean drastic personality change then no.

BowieFan Tue 18-Oct-16 23:00:29

DS2 has ASD. He's high-functioning but does struggle with a few things. I adore him and love him for who he is but if there were a cure for the nasty aspects of his disease (he has issues with loud noises, changes in routines etc) then I would take it tomorrow. I think he feels the same way. He has learned to manage a lot of it, but I'm pretty sure he would rather go through life without having to manage things.

DoinItFine Tue 18-Oct-16 23:02:26

Message deleted by MNHQ. Here's a link to our Talk Guidelines.

Arfarfanarf Tue 18-Oct-16 23:06:07

My eldest wants a cure.
He's so unhappy that he is now under mental health services and he asked me if he would still have autism in heaven.

When your child says they want to die you dont feel like embracing the autism.

If there was a cure i would kill for it for him.

For both of them actually. My youngest is tortured day in day out by the stress of functioning in a world he doesnt understand and which constantly assaults all his senses.

jcalel80 Tue 18-Oct-16 23:09:08

My 12 yr old has hf asd ( goes to a sn school) I couldn't love him any more than I do .but if i could make life easier for him id do it in a second

frikadela01 Tue 18-Oct-16 23:11:39

I think a medically proven cure can only be a good thing if people want to take it.

May sound trivial but it reminds me of the xmen movie where they find a cure for mutants. Rogue, a character who cannot physically touch other people without sucking out their life force is pro-cure and goes to take it. Storm, a character who can summon lightening and control the weather is against the cure and doesn't believe any mutants should be cured.

MollyRedskirts Tue 18-Oct-16 23:12:21

TheSnork, I feel the same way. It was better in a way when Aspergers was still diagnosed. I know it still exists retrospectively but bringing it under the general umbrella of autism hasn't helped. We've lost the ability to differentiate and that's important, especially when talking about autism with people who don't have much experience. It seems crazy to me that my DS who speaks, reads, and attends a mainstream school has the same diagnosis as children who are non-verbal and need dedicated special needs education and more care. Anyway, I digress.

I wouldn't change my personality but it would be nice to get rid of some things, but I suppose everyone thinks that. I'm also guessing that any cure would be targeted at the more severe end of the spectrum.

Sirzy Tue 18-Oct-16 23:16:18

It's hard really, if there was a medication that could help control certain things linked to autism like the sensory problems then yes that would be a good break through.

At the same time though so many of the "quirks" of ds - and so many others - are because of the autism and how that makes their brain works and it would be sad to 'cure' to the extent that personality was changed or lost to that extent as annoying as things can be at times

It's such a delicate thing and the idea doesn't sit that comfortably with me. Not the idea of an outright 'cure' anyway

MrsBobDylan Tue 18-Oct-16 23:19:04

My objection to 'cures' for ASD is that they are usually being peddled by crackpots who are only in it for self gain.

As I understand it, there are sometimes but not always, visible structural differences in the brain. It is my belief that my son's brain, very early on in his development in the womb, formed in such a way that means he was born with autism. We can and do medicate to 'cure' his sleeplessness and could and would medicate to relieve his ADHD symptoms but we cannot and will not ever be able to change the way his brain formed.

Therefore I have come to accept that this is my son and to enjoy him in the way I do my other dc rather than fighting to change him.

DustyMaiden Tue 18-Oct-16 23:20:37

My DS has Aspergers he is exceptionally intelligent, well behaved, affectionate, lodgical. I wouldn't want to cure him. I would want to cure him of anxiety.

Totally understand that others further on the spectrum would want a cure.

Craftyoldhen Tue 18-Oct-16 23:20:55

I just don't think a cure is possible. I believe that ASD is so intrinsically a part of a person that you couldn't remove it.

I think people get very angry at money being spent on the search for a mythical cure instead of spending it on services to support people with ASD (which are often in short supply).

I also welcome the merge of aspergers and ASD into a single diagnosis of ASD. I don't believe verbal ability and intelligence neccesarily make someone less autistic.

Davros Tue 18-Oct-16 23:21:09

Agreed about the snake oil merchants. I've seen parents do some extreme things with their kids in the quest for a cure.
But if something genuine existed I would give it to DS and I know many other parents who would do the same. I also have a sister with AS, not sure about her but she could make her own decision.

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