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?

CrohnicallyPregnant

Here's a definition from wikipedia - so basically HF AS is people with an average or above IQ, and without a learning disability.
High-functioning autism (HFA) is a term applied to people with autism who are deemed to be cognitively "higher functioning" (with an IQ of 70 or greater) than other people with autism.

This is why - IMO - it's such a misunderstood term. We are all very able, typical Aspies in the old fashioned speak, terribly academically bright, just possibly slightly more than normally nerdy (cough), over keen on accuracy, can 'pass as normal' a lot of the time.

Yes we have issues, of course we do, and the outside world can sometimes be terrifying, but there is no way on this earth that we face the same challenges as so many other people with 'high functioning autism'. I don't like to use the phrase 'mild autism' but I would certainly describe us as 'less severely affected (most of the time)'.

Hazey :o.

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

People like mu husband and I were not diagnosed thirty years ago!

We got a 'three for the price of one' from the paediatrician who dx our more obviously autistic son .

I bloody would.

My children have been mentally and physically tortured by the affects of Autism, the agony of wanting to socialise but not quite sure how. Being disappointed time after time because they've been left out again.or can't do something yet again and having to accept it along with all the other shit they've had to accept

Like never driving, going to uni, buying a house etc and so on. The list is endless.

And it's shit, they arent one of the lucky ones, they arent severe enough that they don't have a clue theyre different or able enough that theyve been able to adapt. Theyre in the.middle, fully aware theyre different but not sure why.

And it's shit. Of course I want to take that away, it isnt about changing their personalities, it's about making life more liveable.

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

Well I don't.

I have asd. And two of my kids have asd. If I could pop a pill to cure us all. Would I?...

Hell yes!!!!

For the record, toilet ability is not part of the diagnostic criteria for autism

I know it isn't, I never said it was.

And it's shit. Of course I want to take that away, it isnt about changing their personalities, it's about making life more liveable

^This.

I would have that pill, for my son. He is 15 and has asd and co-morbid OCD. The OCD is a killer....absolutely crippling. He is so called "high functioning" and what that means is that he's in a no win situation. He doesn't "fit" with the neurotypicals and neither does he "fit" with other asd kids. So, we have a horribly isolated teen who is deeply unhappy, self harms and talks of suicide.

So yes, with no hesitation....I'd have that pill for my DS. And he'd agree.

I have two children with asd. One spent two years in a locked down psychiatric unit for dangerous children and is medicated and will be for the rest of his life and the other is currently torturing us on holiday as I stupidly thought before I had treatment for two tumours I could have a couple of days away. He has screeched constantly, been aggressive and had me in tears. He hates being away from home. It's my fault. It's not that I didn't know what happens.
I would love a cure so they can manage and not feel that the world has it in for them. They are both hf but as they get older it's more apparent how distressing they find the world.....
end of moan (sorry)

Asd is not an illness, it is a neurodevelope mental disorder (according to the dam, in icd it is a 'mental disorder' but then so is every type of neurologocal/mh/emotional etc condition as I cd doesn't differentiate. And of course it existed, just people with asd were locked away from sight, institutionalised and disowned. If you are ignorant or nieve about this then learn because you're a fucking embarrassment if you arn't aware of how badly anyone with disabilities were treated historically. But I suspect you are just being goady for the sake of it.

If it's just for the care givers sake then yes that's wrong, do we turn off life support for the care givers sake? Do we euthanasia people who are severely brain damaged for the care givers sake? Vile to suggest that a life altering decision should be made based on the needs of the care giver.

It's a lot like when people say if they ever end up brain dead they want put down, or they claim they wouldn'the have a disabled child who had 'no quality of life' because they wouldn't want to be born under those curcumstances- which seriously lacks perspective and is very linerer pov. If those people were to be in that position they wouldn't want death, they would want to be treated with care, compassion and dignity, and that's what should be considered, but they don't habe this awareness because they arn't capable of looking at things for anothers perspective (and seeing things from differing perspectives is a neuro diverse strength so thank fuck for those of us with duffetently wired brains) Quality of life is a relative term, and needs considered from the persons pov without the inevitable bias being a carer comes with (and I'm a carer for my kids so I know that pain also)

My middle dd often seems high functioning than a lot of higher functioning kids. I don't see asd as part of my personality. For me it causes me and my girls to struggle. It's the reason my youngest can't talk. I've not seen any amazing positives. The world is nt. And I'm aware of my differences. Painfully aware. It's easier now I don't work but to watch my girls struggle damn near kills me everyday.

Using - my kids are in the same lost middle place, but it's not their autism that tortures them it's the lack of others understanding. Those were know who are understanding and compassionate and teach their children to be so also adapt to what my children need and as a result the have great friendships with these families.

It's not autism that needs cured it's societies attitudes. The social model of disability needs prioritised.

I'd be really keen to connect with other women with asd.

I meant youjustwould , autocorrect to using sorry

Ms queen there are many women with asd traits& or diagnosis on the adult adhd forum I use. It's the only UK adult adhd for adHD so if you goodles that you will find it. Most people are lovely there & there's tones of research linked also whick allways appeals to my geeky side.

Thing is you can't take away the autism without changing the personality. They are not separate things.

I have ADHD and I would take medication in a heartbeat if I wasn't TTC.

Yes it's part of who I am. But it's also a bloody struggle and a frustrating drag.

Medication of this kind usually does not have long term effects so yes it's perfectly ethical to give to a child. If they wish to stop taking it when they are older, they can.

I'm not sure that's true of everyone though Bishop. That may well be true for some, even a lot, but not 100% I don't think. But we can't ever really know for sure either way.

I don't believe parents can tell if kids asd (or any condition) is separate from who they are or an intrinsic part of who they are.

That's what my parents believed & I experienced that as crushing & much more damaging than living with my adhd & dyspraxia in the first place. So I cut them out, permenantly. & no way would I risk my children picking up on me feeling that way. Because they will know. People with any neurodiverse condition tend to meet the criteria for being highly senative & so they will realise that you wish they were differvent and that hurts in a way that's uncomparable. If my kids grow up to feel their asd isn't a part of who they are atleast they will know they were accepted as exactly who they were.

Always - I accept my children for who they are. Not in a negative way at all.

But fedup atleast if paren't sure take bishops pov that asd is linked to everything they are then when grown up the kid is free to feel otherwise having felt accepted & loved their whole life. If the kid grows up to feel asd is part of who they are whilst the parents wished for a cure then that risks them feeling the same rejection & pain I did. Why ever risk that? Why ever risk the hurt that may cause the child, or risk being cut out of their lives for good?

Why not listen to the pride of the neurodiverse community? Atleast that way there's no risk. The child may not identify with neurodiverse strengths, but they will be free to do so, & still feel accepted if they do see neurodiversty as an intrinsic part of who they are.

How many people with disability pride do you know? Have you ever bothered to seak out neurodiverse adults who have a much greater chance of seeing the child's pov than someone who is nt? If the child's persoective genuinely matters to you then atleast do this.

If I'd been asked at age 10, or 15 if I wanted a magic pill that would mean I would fit in and not have the issues that I was going through, I probably would have said yes.
I'm pleased I wasn't, because now I know who I am and I feel part of a community of people who are the same, and I do fit in. And I can make up for years of believing I was a really rubbish person.

Aren't there several quite high profile autistics who were/are non-verbal and probably had difficult childhoods with lots of intensive care and supervision needed, who are now happy adults? I'm thinking Carly Fleischmann (she does a brilliant interview with Channing Tatum) and Jamie and the Lion (who I believe is a coder for the BBC). They would not be described as "high functioning" in the sense that most people understand it (which in my neck of the woods is being eloquent, able to pass as NT, the sort who the experts query why you're looking for a label ), yet they have grown into themselves, found their niches and are happy.