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?

Asd is such a massive spectrum that it can affect some people very severely and others barely.

Some quirks of ASD are very personal and do make up personality. In DDs case her very childlike nature. It's a huge part of her as is how she relates amazingly to young kids (although she's totally out of her depth with her peers) and I would never change that but if I could take away the severe anxiety? Or the total inability to cope with changes? Of course I would because it breaks my heart to see her panic over tiny things.

I think you are reasonable to want things to be easier for your child. I feel that perhaps what some of the other people are objecting to, even if they don't articulate it like this, is that they resent feeling that the world wants their children to stop making things difficult for the world.

What Crafty said.
Plus who is to say the way the NT world operates is 'right'?
It's the world not accommodating my family's needs that makes it unnecessarily difficult, not the needs themselves.

I feel that perhaps what some of the other people are objecting to, even if they don't articulate it like this, is that they resent feeling that the world wants their children to stop making things difficult for the world.

Absolutely this.

My close friend's son has Autism...quite severe Autism. She told me that if they could give him a pill to change his being then she'd let him have it.

She said his issues cause him anguish daily and that's nothing to cling on to.

My nephew has ASD. My brother and his wife really struggle to cope with it. That means they have a very unhappy home life. A cure would be a godsend for their little family.

My DS has severe autism .... If o removed his autism he would be a totally different kid!!!
I'd take away his pain in a heartbeat... But I love him just the way he is!

Love, acknowledge and accept!

I have very little experience of asd but this debate strikes me a somewhat similar to something stephen fry expressed in his documentary about bi polar. He said that despite the debilitating aspects of his condition, he wouldn't want to be without it as he feels it is intrisically part of him and his personality. Apologies if anyone finds this parallel ofensive. Dh has bipolar and wouldn't want it to suddenly go. The difficulty is separating the condition from the person. My husband is defined by his bipolar, to his detriment but it's also very much a part if who he is and how he and others relate to him. Iyswim

A "cure"...no. This is me. Part of me. And my DC.

But that said we are at the HFA/Asperger's end of the scale. We can "medicate" the anxiety and put headphones on. We can "cope". We can rationalise, understand and explain.

I do appreciate that at the other end of the spectrum, it's a different story.

If a cure was to come about (which it may well do!) it wouldn't be for those living with autism already. It would be screening embryos and being able to re write DNA before the fetus develops. If anyone is interested in genetic enegeneering then look up CRISPR. It's really fascinating.

For any other scientists on here!

YABU. A "cure" doesn't sit well with me. I'd rather see support and help and acceptance for people who experience distress, loneliness and mental health problems etc as a direct result of living with an ASC. Medication may play a role but instead of a so-called cure, if they could find effective medications without such shitty side effects, that would certainly be very good.

ds would like a cure. at least meds that make it easier for him.

I agree with you, OP.
My 3 have ASD. One says she would never have children as would hate to pass it on - she is HF but has depression, lots of difficulties. She has watched her non-verbal brother grow up and be in a residential school for ASD and now in a care home with 1:1 care and no prospect of that changing in the future..
I appreciate that some with ASD would not want to change, but as for our family we have longed, and still long to be without autism. If only...
And as for those FB comments - I find it more offensive that anyone would deny those with ASD the opportunity to be 'cured', and be free of the condition.

My son is on the severe end of the spectrum. He's 9, hasn't been in school for 2 years, has a CAMHS psychologist & behavioural support worker that do twice weekly home visits. Even his paediatric consultant does home visits because his level of ASD related anxiety is so high that he barely leaves the house. He can't eat solid food because he's so orally hypersensitive that he can't tolerate any texture in his mouth. He is totally debilitated by his condition. Whenever he gets distressed he constantly says "I want to be like E & J (his 2 NT older siblings) & it breaks my heart that he hates being him. For that reason alone, if there was a "cure" we'd take it in a heartbeat.

DS1 has Aspergers and is (like others here have mentioned) incredibly intelligent, funny and popular. He has always blown people away with his kindness and manners since he was a toddler.

On the other hand as he gets older (he's 9) he is finding things harder and harder in terms of anxiety and wanting to isolate himself. I know this is going to get worse.

I want a cure for all the bad stuff but would never want to change him and his quirks.

DS2 is 3 and going through all the assessments but we have been told that he is autistic. He is non verbal and it breaks my heart every day watching him struggle.

I have never heard my baby say I love you and he has only said mummy once properly. I watch him struggle every day and night with things other children his age find easy.

He's angry and as he gets bigger it gets harder. He is withdrawing into himself more and more and I feel like I'm losing him. The scary thing is that he is so young we have no idea how sever things will be.

Would I like a cure? Fucking yes I would.

Does that mean I don't love him for who he is? Of course not he makes me happy every single day.

Severe not sever.

Bleh.

YANBU.

Both DS and I have been diagnosed with ASD and I'd jump at the chance of a cure. DS is in a special school and takes medication for anxiety, he gets the top rate of DLA (which shows how disabled he is because it's very hard to get) and is likely to never be independent. Poor understanding and acceptance of my own ASD has led to suicide attempts and severe depression which has meant I haven't been able to work for two decades. Last year I decided to get sterilised as I couldn't face the risk of having to raise another child with ASD (there's a big genetic factor and I had previously terminated for the same reason).

I wouldn't consider any of the woo cures I read about but if there was something properly trialled that I could take a tablet for (or surgery) then I'd definitely sign up for it.

I also wish that the old Asperger's label still existed. When people learn that I have a child on the autism spectrum, and then meet him, they seem stunned that he can talk at all, never mind in the precocious way that he does, that he has a keen sense of humour, is emotionally perceptive and has many NT friends. It would be nice to see some of his obsessive traits disappear (checking the "marks" left by his pants, for example, every few minutes) and he is rigid and an unbending rule follower for the most trivial things, but no way in hell would I want him "cured". He is utterly perfect.

If I had a non-verbal child in diapers who was, say, age 10, then yes, I might feel quite differently.

I have ASD quite severally in many respects but not in all, I'm good at passing as neurotypical but it's exhausting. There are some valid reasons for wanting a cure but I'd never take one if it was offered. Autism is part of me and I dislike the insinuation that it's stoping me from being a whole person, rather than a cure I'd like acceptance and some empathy, when people find out I have autism they change totally towards me either treating me like a child or like I'm mentally deficient or just by being ridiculously rude and telling me what a waste I am to society. Searching for cures has harmed so many kids it would be far better if people worked with and around the condition it can be done but it takes 24 hour patience and dedication as well as an ability to see when enough is enough. All of my friends on the spectrum would be offended and hurt by the assumption that we need to be cured as there is nothing wrong with us at all. We are different not less and do not need to be fixed.

"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."
I agree with this. I do have a problem with the terms high functioning/low functioning. High functioning doesn't mean milder or more functional, which some people seem to assume. You can have high functioning autism and still be severely autistic - although a better ability to mask symptoms does seem to make life easier for other people, so that's nice.

I take medication to help treat my (severe) anxiety. If I could take a medication to treat my sensory problems, I would (anti-anxiety meds help). It would probably be nice to have a firmer grasp on the actual point of having friends (I have none that are not also family, but this doesn't really bother me. It seems to bother other people a great deal.) But I wouldn't want to do anything to change the way I think.
Because there's Nothing Wrong with the way I think. It's just different, and diversity is good.

Politics

I would never, ever want there to be a 'fix' or a 'cure' for who you are.

I actually think 'cure' is the wrong word but I know where OP's heart is when she says it. As parents/family members when we watch our children struggle we just want to make it better - Like anything else that makes their life hard.

If there were a magic pill that could take that struggle away we would grab it in an instant.

I fucking hate that you have had those things said to you and am terrified for the day they are said about my boys.

Though, I have to say I am glad to see people with ASD standing up here and saying 'I am not less than you so don't dare suggest it' because you couldn't be more correct and more people need to hear it.

YANBU.

It's problematic that there is one name for a condition that is so wide-ranging, that it covers people who are not (in their estimation) disabled by it at all, to those who are profoundly disabled and require high levels of care and are unable to live independently.

I know people on both ends of the spectrum and really there's no comparison.