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?

My DD was diagnosed with ASD at 8, she is now 9. At the moment it doesn't feel very positive. She has lots of friends, sense of humour, lovely manners but then she has a melt down and loses her self control. She feels so guilty about the damage she does and embarrassed about the negative attention. She sleeps badly, vomits from anxiety is is desperately aware of being different. She doesn't even get to be a maths/tech geek. I'm sure she would love a cure. Maybe she will feel more comfortable in herself in years to come.

I'm pretty sure I have ASD. Miserable lonely childhood, anxiety, feeling shut off from everyone. I'd accept a cure in a heartbeat. I see nothing positive about it in my life.

I hope it doesn't sound like I'm diminishing the effects of ASD. MY childhood and schooldays were sheer hell because of bullying. My adult life has been plagued by abusive relationships because I find people so hard to understand. A lot of my family think I am 'weird', 'stubborn', 'difficult' and don't talk to me.

But perhaps I still have that ASD stubbornness that makes me think 'But why should I be the one to change?'. If there was a drug that made me fit in, made my life easier but beiger would it I be doing it for me? or to make life easier for others?

"But perhaps I still have that ASD stubbornness that makes me think 'But why should I be the one to change?'. If there was a drug that made me fit in, made my life easier but beiger would it I be doing it for me? or to make life easier for others?"

Yes, this. This is exactly what I've been trying to say.

If I could take away the things that cause my DS to suffer without fundamentally changing who he is as a person I definitely would.

But then I'm looking into a diagnosis of ADHD as well at the moment (the ADD type not the hyperactive type) and wondering if medication would help him with focusing. TBH I'm not one of those parents who shuns medication - I'm alive because of modern medicine so I tend to embrace what works rather than blanket policy 'no meds'.

I totally get what you are saying Jessica and Trotters, but if a 'cure' was available, I would give it to DN for HIM, for his ability to live a full life, not for anyone else or to make anyone else's life easier although it would do that by default

I hate functioning labels.

You dismiss autistic people's views (on not wanting a cure) because they're 'high functioning' and therefore different to your DN.

But I head bang (or hurt myself in other ways) when I'm distressed, so will you listen to my comments?

Of course I'd like to stop it, but in my mind far better to prevent the distress that leads up to the head banging- for me this is usually a response to some sort of sensory thing or as a result of anxiety leading into a meltdown. In both cases, if the world were predominantly ASD or even more accommodating of ASD, the distress and head banging would not occur.

It's not me that needs to be cured.

As for a 'full life'. Full by whose definition? I get great pleasure from simple things in life. Who's to say that an autistic child doesn't get as much pleasure from watching a film for the 100th time as you do from ? I don't want a 'full 'life, because it's too much pressure. I'm mostly happy with the life I live.

But would your DN choose it for himself?

No, I didn't dismiss anyone's views. I just said that IME, those people who would prefer not to have a cure tend to be high functioning or know someone who is. I never said their views aren't valid. I'm just offering my view, which happens to be different in some cases.

It's great that you are happy with the life you have. You are articulate enough to communicate that to the outside world, and that is also good. My DN is not, and I would love for him to be able to express himself the way that other people can. I would also love for him to be able to use the toilet. Sometimes 'living a full life' can just mean the simple things that everyone else takes for granted.

He couldn't answer that question for himself Bishop. He wouldn't understand, so it would fall to his caregivers to make that call.

Politics - I'm really glad you will be taking the matter further. That is a totally unforgivable thing to say and from a so called specialist. Good luck with getting it all sorted.

Also thank you for saying those things and I will tell DS1 that. He's at an age now where he is becoming more and more aware of his differences - As are his friends.

You can get away with speaking with a full American accent in Belfast when you are 4 but at 9 kids can be cruel.

Thankfully he is a tough little nugget and have always encouraged him to be himself but hearing about someone with ASD in university and doing well will make him happy.

There was a boy with ASD in my class at uni last year Mistress. He was really good at maths and chemistry, and got the bus in everyday, I thought he did really well despite struggling in some areas.

DS1 will thankfully be able to live a perfectly independent life.

He will most certainly be like the people on this thread who would find the idea of a cure rather odd.

DS2 is in a totally different position right now - We just don't know.

It's such a big spectrum.

I felt you were dismissing our views because you said that we are opposite ends of the scale, and there should be a distinction between the 2 groups.

Anyway, ASD is not a scale. There is no such thing as high and low functioning.

Yes, I can communicate and articulate at the moment. There have been times in my life when I haven't been able to- in the middle of a meltdown I am more similar to your DN than you think. As I have said, I self harm. I become unable to speak or understand more than the simplest of sentences. I am unaware of danger. I have even urinated in the wrong place because I could not 'make' myself go to the bathroom at that point.

This kind of conversation makes me really uncomfortable. You simply cannot divide autistic people into high and low functioning groups. The DSM might have it along the right lines with the amount of support a person needs.

But then you are basically saying that those people who need more support are the ones who would want a cure- at least their caregivers say so because they can't speak for themselves. So who wants the cure really?

I mean- your DN can't use the toilet, you've mentioned that a few times. Does that distress him? Or is it for his caregivers' sake, as helping him to use the toilet is far easier than changing an older child's nappy?

Therein lies the issue. One of my children will never be independent either but he'd never choose to be 'cured'. It's such an integral part of who he is. I'm sure plenty of people would want him to be 'cured' for their own interests but he wouldn't. He's quite happy and secure in who he is. Yes he will always need care but he really doesn't mind that. He's happy. The only time he is unhappy is if he is in a situation he can't cope with and the people he is with don't realise and he can't tell them. Then it's meltdown. Whilst he can speak he's not hugely verbal, does have communication issues and isn't particularly high functioning.

It's the frustrating part of autism being a communication disability when you can't ask someone what they want for themselves. Because choosing something for a disabled person when you don't know what they would want themselves - well, you take the chance you'd choose wrong and make things worse for them. I'm sure others would have the opposing view.

Chronically - you share my view too. I feel much the same.

Sorry I do know how to spell your name, bloody autocorrect.

Or is it for his caregivers' sake

Would it be wrong if it were?

I find it weird that year illnesses did not exist 30 years ago

Sorry these illnesses

Which illnesses didn't exist 30 years ago?

Autism? Because that's not an illness.

Besides- I was autistic 30 years ago. They just didn't know it yet because they had a very male orientated view of what autism is. I mean, I could speak, so there was no way I could be autistic, right?

Mistress no, it wouldn't be wrong if it was for his caregivers' sake. But don't then say that it's for DN (or any other hypothetical autistic child) and any benefit for the caregiver is coincidental. As the OP is trying to claim.

Yes. Decisions made about a human being's life should as far as possible be made with that human being's consent. No disability removes that right to consent, the only thing that is problematic with autism is expression of consent or not.

Care givers should always act in the best interests of the human being they care for. Not their own self interest.

I'm using human being here because sometimes people see people with disabilities as something other than human.

My dad is a mental health nurse, he used to work in an "asylum" in the 70s. Autism very much existed then, people were just "out of sight out of mind" sadly.

Autism isn't an illness

The first recorded case of autism (although not called that at the time) was over 200 years ago

The first recorded case of Being an Arsehat was much much earlier.