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?

MistressMerryWeather, I understand where op is coming from, there are times I hate parts of ASD, sometimes it's just so hard to cope but the majority of the time it's because of external factors and not having the correct support. I'm currently having an argument with my university support mentor and study skills mentor who are 'specialists' in the autism community about the necessity of eye contact, the more at ease I am the easier it is for me to make eye contact but even then it's limited and I've been told we need to fix the issue because it makes me look like a simpleton and I'll struggle to find employment, she kicked me out of the office when I told her that if that was the employers response then I wouldn't want the job and as my plans involve completing a masters and doctorate before going into research or teaching eye contact was hardly an issue. My Reason and Argument professor says I'd just be the typical eccentric academic and I'd be happy with that. This only happened today so I was/am feeling over sensitive and annoyed at how people who are supposed to be supporting me see my ASD as an issue rather than what drives my interest. I know it's hard for families and I know what it's done/does to mum but I know she wouldn't change me but it is helpful that I'm on the spectrum as I'm very close to both my nieces and nephew that are on the spectrum and I can cope with them and help them the way others can't and I can help my sisters adjust things to help the kids without making them targets for bullies.

Politics, your post literally made my jaw drop.

Did this so called specialist seriously use the word simpleton? I'm fucking furious on your behalf about the whole situation but well done for sticking up for yourself.

Have you considered putting in a complaint?

DS1 has always and probably always will struggle with eye contact but I had no idea that people felt this way - Then again he's only 9 so it's only a matter of time it seems.

It's not something you or he can just fix.

I'm sorry this happened today.

Umbongo - thanks for that link, really good video.

I don't personally have a "horse in this race" - but I have good friends with children who have various levels of ASD. One of them, I know, would love to take away the harsher aspects of her son's condition - he has terrible physical outbursts, hurting her and himself, and now has epileptic fits too.
Lots of them would like to do something to alleviate the anxiety.
And on the other side, yes, there are people who don't want to be seen as "broken" and needing to be "fixed" or "cured".

Very like the analogy with X Men, in fact.

I don't know the answer, I really don't. But I do believe that we could all be more able to embrace the differences between us, and allow people to live their lives as they are, instead of trying to push everyone into a more narrow definition of "acceptable".

I'm another one who thinks there's a problem with so many different issues coming under one broad label.

Plus, some traits... logical thinking, a strong sense of fairness... they're good things, surely? But not in this fucked up world.

Years before I knew anything about ASD (now being assessed myself) a friend diagnosed with Asperger's was explaining some stuff to me. Apparently his consultant had said something like "if everyone had Asperger's, the world would work differently but it would work". That's third hand quoted and massively oversimplified, I know, but I think there's a relevant point there. A sort of thought-experiment acid test:
Would the world work if everyone was broadly similar to this person? Yes > No cure needed, disabled by societal expectations. No > cures welcome.

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

Absolutely. Which is why my preference is for pre-natal testing. Would I have said this when my son was a wee boy? No - because I didn't know half of it then. I didn't know what can happen to those like my now 25 year old son who has a diagnosis of classic kanners autism and Tourette's, as they get older. It can mean the most horrendous of deterioration in the form of additional mental health problems including, as in the case of my son, paranoia, delusions, depression, and frontal lobe epilepsy.

My son is loved very much by all of us and lives at home with me plus 4 full time carers, and one part timer providing round the clock 2-1 care in a custom built house that was built specifically for my son and extended family living. When I die one of children and their family will move in with him. There are 4 of them and they have it sorted out between themselves.

My son used to travel the world visiting steam trains but that's all stopped now along with countless other things in his life which despite our efforts and personal resources just cannot happen anymore due to his deterioration. On a day to day basis he can't even make his breakfast anymore when he previously loved making it whilst saying a few phrases in French he'd learned from some French chef on the tv. ❤️

He's never been to school, I did home ed with him, and any professional who helps us look after him his hand picked. There is no making do in his life.

I'd actually love to tell you all about my darling boy, the one who makes my heart burst with happiness because he is what love means, but the truth is I'd go on and on for ages so it's best I don't. I'm not even too sure though how some of it it would go down, like if I told you his new way of saying hi to people when they come in is to say Fuck You - in reply we just say 'you too DS. He loves it. We love it. And no, it's not the Tourette's. It's his way of wanting to be a hellraiser and have a laugh. 😍

But would I have had him if I knew what was going to happen to him as he reached mid to late teens, and what will probably continue to happen as he gets older? No. Just that. No.

Oh and I forgot the medications he's on. Horrible medications that can cause the most awful side effects. And yes there are new versions of these medications but my sons been in them, even at off list doses, and they don't work for him so he has to have the old varieties - including one by depot injection every 12 days.

I agree that there are problems with everything being lumped under the ASD label (rather like there are problems with all forms of dementia being lumped under the Alzheimer's umbrella but that's another issue) - I have 2 friends with children who have PDA (pathological demand avoidance for those who haven't seen it before). Now considered to be an ASD condition - EXCEPT that managing that condition is very different to managing most other forms of ASD.

My friend in the UK, her DC has had it accepted as a diagnosis, not in her own county but in another one; and has accessed help for her DC.

My friend in Australia cannot get her DC diagnosed as it's "not recognised" by the DSM V, except as a sub-set of ASD - and the psychs won't diagnose this child with ASD because the child isn't autistic. There are some traits, but a lot that don't fit the "pattern"; and anyway, a diagnosis of ASD wouldn't help this child as the management tactics for ASD wouldn't be appropriate. Latest "diagnosis" was: 'stubborn and wilful, manipulative to get own way. Nothing else "wrong" with child.'
Totally ignoring high anxiety and other symptoms - apparently all "made up".
The school have listened to my friend and accepted that this child needs certain forms of help (oddly, all the suggested management tactics on the PDA Society website have helped!) but without a formal diagnosis, much is denied to them.

I also have friends who either have Asperger's themselves, or have children with Asperger's, who are pretty pissed off that their "label" has been removed - it was part of their identity, what made them "them", and they're not happy it's just been erased.

I really do understand why some people would want a cure to help make life easier for their child, if they could just magically remove the autistic traits but leave the person they know, but my understanding is that autism is an inherent difference in a person's neurology, just like their intelligence is. It's not an add-on beneath which hides a neurotypical person; it is woven into their genetic make-up.

My 6 year old ds has ASD, diagnosed at level 2 but with an aspergers presentation (very verbal, intelligent, but with many social issues and repetitive behaviours and rituals). I do wish life was easier for him but he's doing well in mainstream school and is generally happy, if sometimes anxious, obsessive and ritual obsessed (much worse before we knew he had asd as we've made many changes since then).

I feel uncomfortable with the idea of a cure, however, as so far as I can tell, the only really feasible 'cure' (given asd is most likely caused by often-undetectable chromosomal differences) is finding a definitive test for all the various chromosomal causes of autism (many of which are as yet unknown) and then conducting prenatal testing and deciding whether to proceed with the pregnancy or not. If you'd told me when I was pregnant that my ds would be autistic I'd have terminated the pregnancy because of my own ignorance about the spectrum and perception of what life would be like for a child with ASD, and what parenting a child with ASD would be like. This horrifies me. It's the likely genetic causes of asd that make the idea of a 'cure' seems misguided to me. It's like discussing a cure for Downs Syndrome. The 'cure' is that the person is never born.

I recognise that my ds and our family are in a very different situation to some other families on the spectrum so that colours my perspective, but I cannot see how a 'cure' would be possible beyond prenatal genetic testing as we see for other conditions and I think that would be a dangerous road.

I would like to lessen some traits of ASD for myself, DH and DD. Anxiety for one.

I can't totally empathise with wanting a cure for individuals on the more severe end of the scale, who wouldn't want their child to have an easier life? However, I would not want ASD irradiated, without ASD individual, we'd never push the boundaries of science, art, music...so many wonderful discoveries have come from ASD.

Aspects of ASD are so special, and everyone being NT would not necessarily push the boundaries of mankind!

My DS2 handles his ASD well but probably the most heartbreaking moment of it all was when he was home during his second year at uni and broke down in the kitchen saying how he wished there was a cure. We always told him we love him exactly as he is and wouldn't change a thing about him. But then we are not the ones having to live with it. So yes now I wish (with reservations) that there was a cure. Just a personal take on it and other people will feel differently.

I would be happy with treatments that would mean that my son would not be distressed about sensory things and would be able to understand and communicate.

I also think that there is a lot that society could do to make his life better, that at the moment doesn't happen.

I don't need to be cured. I am not ill.

ASD is a fundamental part of who I am. Does it create difficulties in a world that has become increasingly louder and designed for neurotypicals? Yes, often.

I wish the world was more accommodating.

But don't suggest there's something fundamentally wrong with me as a person. There isn't. I'm just wired differently to some others. Sometimes it's an advantage. Sometimes it's not.

And I am getting a bit fed up with autism continually being criticised on these boards, in terms that would not be accepted in discussions about other disabilities.

I am autistic, and as has been said by many on here I would love an effective treatment for my anxiety and sensory problems. I take medication which helps, but to be honest most of my difficulties are caused or exacerbated by living in an NT world.

If there was a cure, and it involved the person not being born at all, I think that would be a great loss to mankind, as shark says.

A few people on the thread have said that they wish the world was more accommodating and understanding. Could I please ask what that looks like? How can such a loud, busy world become better for a person with sensory issues to cope with?

I have a friend with a child with quite severe autism. In a situation that he cannot cope with he will hide, maybe under a desk or table. We all accept this and give him some space to calm down. That is honestly fine, no one bats an eyelid. How could we do more than this without shutting down whatever the activity is? If things are noisy because other children are having a great time, how do we make it better for him?

Of course you can't control everything but even just thinking of the sensory level so much of the noise/light in society is much louder/brighter than it needs to be and that makes life so much harder for many people than it needs to be.

The national autistic society produced a great video last year to show some idea of what sensory overload is like for an autistic child in a shopping centre and it is an eye opener.

Generally ds is fine when we go shopping in Tesco but struggles in Asda - Asda have music playing the whole time, lights tend to be brighter and the way it's laid out with narrow aisles and things make it seem generally noisier. Tesco for ds - and from previous conversations a lot of autistic children - actually has a much better environment.

For my own son it would be to provide activities that only a small number of children can attend. Even the success of most activities for children with sn is measured on how many are there which means my son cannot go to them. Generally noise doesn't need to be added to with loud music, everything doesn't have to bright and stimulating and fake smells don't have to be pumped out.

Society could also help by providing the educational facilities that he needs, the adult support that he will need, by not having everything that he needs having to be fought for. Even basic things like getting a blue badge, having somewhere to be changed, being listened to when he is in pain and getting the medical treatment that he needs.
People need to realise that just as they might find some of his behaviour irritating, he finds some of their behaviour actually distressing.

I suffer from Aspergers, and that is the verb for it. To me it's not something special or diverse, it's a disability. I'm not who I am because of it, but despite of it - a little more severe and I wouldn't qualify as a 'person' at all, merely a bundle of reactions and squealing misery. Because I've been there, when the melt-downs washed away all consciousness and just leave the pain and fear. Sometimes I think I get on with animals so well as I'm well aware of what it's like to be one, cowering from the chaos around me.

I've spent most of my life wanting to die. I stopped because I found a non-sanctioned treatment that allows me to pass for somewhat normal, virtually eliminating the social anxiety and sensory overload; but it costs so much, in terms of its consequences, that it has only turned me into a different form of high functioning something.

It would be utterly monstrous, an unacceptable crime, to knowingly pass on this condition to a child. If there was a cure, I'd take it in a heart beat - if there was a way to save a child from being born with this condition I'd call it a merciful moral necessity.

That's just how I see it, and many would call me one of the lucky ones.

Thank you sirzy and haddock. That is helpful. If we think more on a sensory level when setting an activity up, and strive to make it a calmer and less stimulating environment, hopefully he will feel more comfortable and less likely to feel anxious. Sorry if that was the obvious answer, I really wasn't sure what else we could do.

I think a lot of people just want the best for their children, and they believe fitting into the "social norm" of society will be easier for the child than being extra ordinary and having issues with socialising, noise, communication, etc.

I don't think there is an obvious answer really. I think it's only through living with something like that you start becoming more aware of the little things you don't notice or think about otherwise.

I think a more understanding and accommodating world would be mostly based around a general knowledge of autism. This barely existed when I was a child and so I was humiliated as much by the teachers as by the other pupils at school and ostracized. Apart from less noise, no flashing lights etc what helps me now is being able to ask people for help sometimes. So for example, when I went to collect a hire car and I couldn't hear/understand anything that was said to me at the reception I told the representative that I was autistic and he went with me to a quieter place and explained everything and gave me notes. When I was stood at a train station recently not knowing where to go next - because there were barriers in front of me to stop people wheeling trolleys - I waited and watched other people and no one gave me an odd look/laughed at me. So other people's understanding is a key issue for me.

Genuine question and not meaning to be goady, just interested reading the posts from people with a wide range of experience.

If there was a treatment (I'm thinking brain surgery rather than a pill) that could change severe (is that the right word) ASD so that a child could go from non verbal/not able to be independent to what used to be called Asperger's would you take it? The child would still have ASD, and may well still find noise unbearable and life difficult.

I wish I could have a cure for ds.

He is lucky in a way in that he has never been bullied for his 'strange' ways and his small group of friends understand asd a lot more than most adults. They accept him for who he is.

I mostly see this type of thing in response to moronic anti-vaxers who would rather their children die of preventable diseases than have the dreaded autism. That's when I see people saying autism isn't a disease, that it's part of a person, etc. You can understand the defensiveness.

I also think this is the same reason many people baulk at the idea of taking medicine for mental health problems whereas they wouldn't think twice about taking antibiotics for an infection. They feel it's changing THEM rather than their body.

I find the anti cure comments tend to come from those who are very HF themselves or their parents/carer's.

DC1 has severe ASD (low functioning with severe learning diffs). life is so hard for DC1, struggles with so many very basic things. The impact on my other child and my DH and myself is immense (and largely negative - it affects everything from health, MH to finances).

I would take a cure for DC1 in a heartbeat.

Ohdearme no real words but thank you for sharing. Xx