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?

When I was in my late teens/early 20's I used to be very close friends with a woman with Aspergers, we are both now in our 30's. Her mother seemed to constantly take delight in reminding her how her diagnosis had ruined her life and recommending to my friend that she should never have children unless science progressed to the point that you could terminate for ASD.

In my opinion this woman clearly had more issues and hang ups than her poor daughter who now lives an independent life with her (also diagnosed with Aspergers) fiancé.

However it leaves me in no doubt that for every parent of a person with ASD who says they would never change their child there will always be another who would.

"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 take medication for mental health problems every day without batting an eyelash. Bipolar disorder and anxiety. I would absolutely not classify them in the same category as autism. Take away my BPD symptoms and I'm the same person, just less crazy. Take away my autism, and I frankly have no idea who I'd be. And just as frankly, I'm not sure I'd want to be that person.

coff33andChoc High functioning is not the same as functional. I've been described by a doctor as "extremely high functioning" but that doesn't mean that I'll ever be capable of living fully independently.

My mum likes to comment on how hard life must be for me, but frankly it's much easier if I'm not trying to live up to other people's ideas of who I should be. I sometimes joke that my main disability is other people. I know it's hard for her though, she has her own problems and really doesn't need to be worrying about mine.
As for me - Would I like to get an education, a job, a social life? Yes, maybe, possibly. Would I want to do that at the cost of my fundamental me-ness? Would you be willing to permanently give up who you are at your very core in order to grow wings?
It might be hard work being me, but I think I'm worth it.

ninja

Thanks for the post. That is similar to how I feel about it but nice to hear it from the POV of someone who is living it first hand.

Your comments on your mum are interesting, that is one thing I am tying hard to avoid with ds. Yes he struggles and his world is different to mine but I don't want to highlight that to him too much, I don't hide things but j don't make an issue if things - I hope that makes sense, I know what I am trying to say but articulating it is difficult.

JOKE DoinItFine

PP upthread have asked what would make a more autism-friendly world. Here's good example - not calling people with autism "an insufferable wanker" or "a dangerous wanker" because they have a different sense of humour.

It may not have been a good joke but I would have thought that by using made-up grammar it would be obvious I wasn't serious.

A proper cure, or at least something that helped them 'improve' sorry struggling to get a decent term their lives (like ADHD pills) without turning them into zombies, fine. Plus the more research that goes into that, the more understanding of it there is which is a great thing on its own.

But selling false hope or shifting some bogus 'cure', hell no. Not sure I'm comfortable with the idea being solved that it can be cured, rather than there's potential to limit certain aspects, though. I'm not even sure potential drugs to limit things helps with people who are NT or don't have non-NT experience understand the realities of being non-NT.

I am in process of assessment myself. My children all have ASD and I suspect my DH has too.

Yes we struggle with anxiety and we're not the most social people. Crowded areas can be physically painful and disorientating. But the absolute worst element of all of it for us is the way in which the world won't accept difference and accommodate it. That's what makes it harder.

That goes for my physical disability as well. It's not the disability that is the worst element its others' expectations that make it harder.

There are other elements which are hard so live with - sleep deprivation, the need for constant supervision, the constant repetition.

We accept the kids' needs for what they are and work with them. I'm starting to think 'and sod the rest' now as I get older too - as long as what they're doing isn't criminal or hurting anyone else (physically or emotionally) then we just get on with it. If others can't accept that it's their problem.

By the way all of the above applies to me and my family only. I do understand there are massive differences in the spectrum and what is our experience isn't true for all.

"There is talk of ADHD also becoming part of the AS"
That make a lot of sense. My daughter has ADHD and a lot of the coping strategies I learned for myself help her as well.

I can't read the thread as this is too upsetting a topic for me.

The neurodiverse community often have a lot of disability pride. My adhd & dyspraxia are linked to every part of who I am. The adults who wished me different or would have chosen a 'cure' friend me as a child are the ones I cut out my life for good. My spontaneity, my compassion, my creativey, my determination all come from my neurodiversty and I wouldn't trade them for the world. I simply wouldn't be me without my disabilities. Albert einstin, Newton, motzart etc are all believed to have been neurodiverse.

That's not to say I don't do everything I can to manage the negating effects of my conditions and I do choose medication- bit this doesn't 'cure' anything. It makes it less difficult for me to cope that's all. Neuro developmental disorders can't be 'cured' as it's how our brains are wired.

'Cure autism' groups have been around for ever with their snake oils and sweat therapies and massive over supplementation of certain minerals and gap diets (which for many kids with sensory issues around food can amount to starvation and malnutrion). I get looking for ways to manage these conditions, but for some it crosses into child abuse. Scuentoligifts et al with their rejection of medicine.

While there are no Meds licenced for treating asd there are Meds used off licence to treat various symptoms, that's nothing new.

It's really difficult because i now see first hand the pain of being a parent to kids with these conditions, my kids have asd/pda, adhd, dyspraxia, spd & several other diagnosis. The guilt I have felt for passing this on the last whole is beyond compare. Seeing them struggle in the way I did is heaRT breaking, as I believed I could make it easier for them. But that said I know I experienced any wish that I didn't have my conditions as rejection, and actually when societymology adapts to my kids and understands and accepts them for who they are they cope relatively well, and well they are just amazing the way they are. Little whirlwinds of caos who are also light up the room. I will allways work with drs to find the right combo of Meds to manage their anxiety and attension and sleap and sensory reactions but who they are just as they are is perfect and most defibately don't need cured. The world is most definitely a better place for having them in it.

I often think adhd Meds should be used off licence for asd (or tried, I'm no doctor) as those of us with adhd who take them tend to report a reduction in sensory reactions, anxiety and procrastination as well as improvement in focus and orgais action. But I wouldn't take a 'cure' as I wouldn't be me and they wouldn't be the incredible people they are.

I don't know much about the 'cure' talk but it seems like a backwards step to me, not a positive thing because surely what is being talked about isn't some magic pill to rewire autists' brains. That would (I think?) be impossible. What is more likely is that it's some kind of screening which would 'fix' an unborn baby or, even worse, screening to offer termination. That's the totally opposite of progress and acceptance.

I would assume that society is going to get better and better at catering for autists because it is going, as the current generation grows up, to become more and more common. Presently the number of adults with autism is relatively small, in comparison to the general adult population. But the number of children with autism is huge and growing. Those children are going to grow up and they will still have autism. Society is going to have to learn to change and make their lives easier.

Manic I do believe the relatively low number of diagnosed adults is due to under-diagnosis, much as with girls - there are similar numbers of males and females with autism but due to the diagnostic process having been male autism biased some girls didn't meet criteria.

As I said before I'm going through the assessment process as an adult, I really do believe my husband would meet criteria and I personally know five women who have been diagnosed with autism, all between the ages of 29 and 42. The diagnoses have been made in the past three years.

Sorry, make that 6.
All the women I know who have been diagnosed have children with autism too. I don't think it's an explosion more an evolution.

Cure autism' groups have been around for ever with their snake oils and sweat therapies and massive over supplementation of certain minerals and gap diets (which for many kids with sensory issues around food can amount to starvation and malnutrion). I get looking for ways to manage these conditions, but for some it crosses into child abuse.
Completely agree with this. As I said before, I would choose a genuine cure if one were available and I'd like DD to be able to have children without ASD as she has already lived with it all her life, as have I since realising my sister has AS. I genuinely feel that DS would still be himself without his ASD, he has so many similar personality traits and habits to DD, I would live to know him without ASD. As for society being more accommodating, yes if course we should accept diversity etc and I think that's got better. But I don't want that to be an excuse to do away with all the ASD specific settings and disabled only groups, they are my (and Ds's) lifeline.

Yes, groups for children with autism mean my kids feel they can be themselves rather than 'acting NT'.

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

^^^ This. x 10000. It's taken 50 years for me to accept myself, and this has only happened with the help of anti-d's and maturity and greater understanding. How can you disentangle the 'autism' from the personality? Which bits of me would be wiped out or made more acceptable?

I am all for society in general being more accepting and open to people of all disabilities, I think that would be a great step forward for everyone.

I do think that ASD is about how the brain is developed and so there wouldn't be a pill or something that could be given to 'cure' it. I think its more of a hypothetical idea at this point. I think the Xmen cure analogy is a good one and something I have thought of myself!

I am absolutely against all the 'snake oil' fake cures that are peddled, it makes me quite angry and yes some of it should be considered child abuse. I know that DSis has purposely chosen not to try any of the special diets for DN because it would basically mean excluding everything that he does eat from his diet and she isn't willing to do that.

As a PP said, I do find that most of the people saying that they don't think a 'cure' should be available are those who have/have children with ASD at the 'high functioning' end of the scale, which is quite a different thing to the severe end of the scale. I do think there should be some sort of distinction between the two.

DN receives high rate DLA with low rate mobility. He is doubly incontinent. He needs to be strapped into a wheelchair when we go out because you cannot be sure he won't bolt in front of a moving car. He bites himself and hits his head against walls and hard surfaces when distressed, we are in the process of having him fitted for a helmet for this. He needs to be put under a general anethesthic for even routine dental treatment, and wait a year for an appointment. He cannot dress/wash himself without help. He cannot read or write, except for the 4 letters of his name. He is basically non verbal, can't answer questions and only speaks through memorised lines of Disney films. He has no friends or interests really. He goes through stages of not sleeping and medication doesn't help at all. If I could take that all away, I would.

I have days where I can accept my autism is part of me and wouldn't get rid of it. And days I wish I could be normal and would gladly accept a cure.

Especially when my sensory issues are at their worst and my hair drives me mad, my clothing drives me mad, and my poor parents struggle to cope with the resulting mess. I can't live independently, or at least not yet. I struggle to even take care of myself sometimes. And I'm high functioning. Yes, if you meet me briefly or spend a bit of time with me you may not notice I have any issues, but it's just a mask.

I don't think adhd or other ndds are part of asd. My dyspraxia & adHD are almost the opposite in terms of strengths & difficulties to asd. I think the prisim idea Mary Colley came up with before her death is the most representative of how ndds overlap

Yes MistressMerryWeather, simpleton was the word she used and she's a specialist, I am seeking help from a postgraduate law student friend on how to proceed in complaints. I'm lucky in the sense I won't let that type of comment go without calling the person on it, I'm much more assertive now than I was a few years ago eye contact is always going to be something I struggle with an I've had this a few times, the only thing I can suggest is if your son has this experience to tell the person he can either look them in the eye or listen and as we listen with our ears it doesn't matter where he looks, let him know he's under no obligation to explain or disclose his ASD if he doesn't want to and that his opinions and thoughts are just as valid as his peers, we may have different struggles but that means we have different more specialised strengths in or passions and hobbies (they aren't obsessions).

My kids are probably what would be classed as high functioning, but also get higher care and lower mobility. I don't think that shows anything. They also have band 4b funding for their ehcp. They are verbal, social and intelligent. Yer their anxiety means they couldn't attend schooligan for years & now have a specialist placement, they are still in nappies at 7 and have broken my nose, teeth, fingers, dislocated my jaw and fingers, blackened my eyes all due to melt downs that they cannot control. Through work I know several lower functioning children who are much happier than mine and can access life more easily, who get more understanding, who arn't aware they are different. Neither higher or lower function ing dictate quality of life & it doesn't follow that parents of either would want or not want a cure.

I think that autism is practically unique in the wide spectrum of effects and difficulties. perhaps it would be easier to use Asperger's instead of the rather vague 'high functioning'.

I remain ambivalent as my family would have loved to medicate me 'normal'. I do wonder about the side effects and morals of medicating young children without consent.

I don't think there's any moral issue with medicating children- if your kid had diabetes you'd medicate, if they had a heart condition you'd medicate, if drs recommend medication then trying their advise makes sense. Medication only treats symptoms though, it's no cure. My adhd Meds don't cure my adhd & they don't change who I am as a person, they just help manage certain symptoms. If medication hloan help manage certain symptoms of asd then great, but a 'cure' sounds like going down eugenics line of thought. I don't want the world rid of amazing people and I don't want to live in a world that would choose that.

Might be easier but it wouldn't be correct.

I can't believe that parents of children with sever autism wouldn't like a cure - there aren't many benefits that come with sever autism (not talking about HFA).

My child couldn't consent to the medicine that saved his life at 8 weeks old.

He couldn't consent to the medication he has had to take daily since then to keep him breathing.

He hasn't been able to consent to any of the many medical procedures he had had in the last 6 years.

How is any of that different to his ability to consent to having medication to help his sleep? Or different from another child having medication to help control ADHD?