To hate Autism

[EnglishRose1320]

I know I might well be but today I am done with it. I am sick and tired of everyone telling me it brings so much joy, a different way of thinking, unique gifts etc. I'd happily swap my son's autism, lose the high IQ, the quirky traits, have an average child in a heartbeat because nothing is worth the aniexty, the depression, the self harming, the house desteoying, the life destroying that we have to deal with. I don't see Autism as a blessing and I don't know that I ever will.

But that's basically saying that autistic people en-masse shouldn't be born! You're not even bothering to distinguish between classic autism and Asperger's or someone who is non-communicative and shit-smears and all the other behaviours you hate. You're writing us all off. Don't you understand that?

If you read further back in the thread you'll see that I had a lot of abuse and stress over years from my autistic brother. I had a lot of trauma from that. So no, I don't feel that I personally am wrong to not want to have a child with autism. Now, I know lots of lovely people with autism, my brother thankfully isn't representative of them all. But a diagnosis would bring up a lot of issues for me.

And no, I am not saying autistic people should not be born full stop. I am saying that for myself and due to my experiences, it's not a path in life I want.

BishopBrennansArse not very pleasant is it.

Look I know it's really, really hard sometimes. Dh and I have been sleeping in shifts since dd was born, she very rarely sleeps even when they tried medication. But I wouldn't change dd, I really wouldn't.

I wouldn't change myself either.

It isn't something that can be changed to me. It's my/dd's brain, it's who we are. I wouldn't see or experience the world the same way, it wouldn't be me.

I love my attention to detail, the sheer joy of spotting an obscure pattern and following it relentlessly, I live for my obsessions and I can lose myself in them completely.

Of course there are shit, horrible things about it. I'm still quite uneasy with some of the replies on here (though I get it too, sometime the lack of sleep and pure despair can make you say things you don't really mean)

That’s not to say I’m dismissing anything that anyone has said on this thread, I hate autism sometimes too. I wish I could be NT and fit in sometimes, I wish that my kids didn’t face the struggles they faced, and I wish that we hadn’t had to sell up and move away from the only home my children had ever known because DS1 was targeted by disablist kids who tormented him for years, and beat him up last year. (The police did nothing, parents couldn’t have cared less)

I shared the penguin analogy because it struck a personal chord with me, and it might for some of you. If not, that’s fine too.

I like my attention to detail too, I didn’t realise that everyone can’t see the one spot I’ve missed while hoovering, or that I don’t read individual words, I see whole passages of text in one go.

This is probably going to sound dreadful but if they could screen for autism I’d have never gone ahead and had my kids. Especially if I’d known my last child would’ve been born with autism as well

I would have still had them, in all honesty. I’d just have had support in place far earlier without having to battle for it for DS1 for many years leading to an almost complete breakdown for me. But honestly, most of the problems we’ve encountered with autism have been other people. That might sound stupid, but autism IS normal to me, I’ve never been anything else, and my kids haven’t either. In fact DP is the odd one out in our house as he’s the only NT one!

I think an enormous part of it is that there seems to be vast differences in the support available in different parts of the country. We are very lucky in that our LA is fantastic, school support is there, local groups for parents and kids, the medics/paeds and HV are on the ball. We even have a dedicated specialist HV. Nursery have been shit hot with the support needed for my youngest.

I too totally get what you mean op.
I wouldn’t change my son per se, but I would take away his anxiety and make him more able to come to terms with his diagnosis. He hates his autism because of the stress that his sensory difficulties bring it yesterday he asked me if I’d take away his autism if I could. I told him that I would only take it away I feel he wanted me to but not if he didn’t.

He liked my answer and understood what I meant.
A few months ago, he saw nothing positive in his life and just kept saying he wanted to die.
Now though, he is focusing on his minecraft and actually sees a possible future in online game design/YouTubing. It doesn’t matter if that’s realistic dream or not (although his channel is very successful and in just 6 months, has over 900 subscribers) simply because it’s a positive thing for him at the moment.

For me though and our family, although we love him to pieces, the life we envisaged isn’t what we are living. It’s like a type of grief or berievement....when the child you have isn’t the child you thought they would be. I gave up the career I’d just got onto studying for, dd is constantly resentful of his behaviours and me and DH just don’t have a great relationship anymore. It’s fine; we muddle through but my every waking moment is pretty much focussed on what I need to sort out for DS.

Extended family sees only snippets of our life and so don’t appreciate how hard it can be sometimes (most of the time). Their support therefore, in only sporadic....but becsue of the nature if ds’s ASD, that’s really only all it can be.

I think I want to get a penguin t-shirt now

I agree with the 'world-changes' mentioned above.

Those bloody hand driers are the bane of my life, I'm not exaggerating when I say they terrify me. You never know when they are going to start blaring at you (I realise that may just be me - horrible sounds feel like they are directed at me personally and are threatening)

I also got a bollocking from some woman once for using the disabled toilets with dd (we know for certain that no one will let the hand drier off in there, neither of us will go near the evil thing) so just a bit more general awareness that most of us don't have 'autism' stamped on our foreheads and aren't trying to 'scam' anyone.

I have one other thing I'd ideally like to change, but realistically it's not going to happen.

That snap second judgement, that gut instinct many have to immediately dislike or withdraw from someone if a societal norm isn't being upheld. I've felt that before, usually around me avoid eye contact as it causes me pain. I've heard others discussing me (my hearing is scarily acute) and how rude and untrustworthy I am for not looking at them/ interrupting because I thought they'd stopped talking/ looked away and got distracted by a light, noise or movement.

@SadKitty86 I prefer this one

Yanbu. My DS is 17 and has autism. Every day. EVERY day, is so hard.

The spectrum is so vast too. Some autistic people have severe additional learning difficulties and some are near genius. It’s only truly “a blessing” I think, for those high achievers whose autism has allowed them to do well. For my son, life will be very very hard.

Notreallyarsed Now that's a perfect t-shirt

@SadKitty86 it does me fine on the Nursery run

Love that T-shirt

I'm not sure about the swapping my DS' autism if i could, yes it's been fucking hard at times and it does make his life more difficult but that would be his decision to make not mine.

Before having my DC i did a lot of voluntary work with children with disabilities and remember once saying that of all the things I would find most difficult would be to have a child with autism - I was wrong.

My previous experience was with children at differing places on the spectrum and I have a DN who is non-verbal whose autism I would swap if I could.

But as my DS is about to graduate this year, God-willing only his opinion counts now, but for those fighting the terrible battles they come up against with parenting their DCs with autism I have nothing but respect and support for and however you feel about your child's autism is just fine by me.

Notreallyarsed smelling a new book, I do that tooand don't have autism. It's the reason I prefer a book to my kindle lol a lot of people do it. I also smell a new catalogue.....

@Snowysky20009 I do that with catalogues too! Especially ones with shiny pages

Interesting thread. I don't think the op is unreasonable. I'm not sure if I hate autism. I'm reminded of another I read where someone posited an 'autism cure pill' and asked if people on the spectrum would take it. There were a lot of people who adamantly would and a lot who wouldn't.

My first thought in reading it were 'yes!' of course I would take it. It would save me so much pain. I would have been able to get a 'real' job and probably a house and a family and all that jazz. Forget the big stuff, just imagine (for example) knowing I need shower and then going and having a shower, instead of spending 3 hours fretting about what the shower water will feel like on my skin, finally working up the courage, getting undressed and running the water, and then bailing at the last second and just washing my hair in the sink and hoping no one notices my body isn't clean...

But the more I think about imaginary neurotypical me, the more I wonder who they are. I wouldn't have had the friends I've had or the jobs I've had or lived in the places I have. We wouldn't think the same. What exactly would we have in common?

I don't hate myself. So maybe I don't want it to go away, exactly, but a shower without mental exhaustion now and then would be nice.

I don't want my children to struggle the way I have. If I could choose, I'd probably choose them not to have autism, but then if I could choose I probably make all kinds of adjustments (perfect vision so they don't have the faff of wearing glasses, etc).

I do think that it can be hard to separate oneself from autism. I do think that I have my own personality though, that I have an existence beyond my autism and not all of my traits are due to it.

It is very difficult to untangle them though. For me I feel like a collection of Christmas lights, that are all tangled together. It's very hard to separate them and if you eventually could you'd find they had labels on each end. Some would have one label(autism) or (personality) others would have two(autism and personality) (autism and dyspraxia) (autism and OCD) etc, or even more(personality, autism, depression).

I find it very difficult to say which traits are inherent to me, and which are due to my conditions, but there is a me beyond autism, and even if my personality changed a little, I wouldn't hesitate to accept a cure. Not that I think one is possible.

Quite besides the point I really do believe autism is an evolutionary step. It's not quite 'there' yet but I do believe the human brain is changing and the way autistic brains are structured is evolutionary.

@BishopBrennansArse that makes a lot of sense to me.

I hear people saying all the time “we never had autism when we were young” and I’ve often wondered if the changes in society have made it harder for autistic people. Like with lights everywhere, loud music, music on phones/devices, hand dryers (those dyson ones absolutely terrify me). There’s nowhere quiet any more.

bishopBrannansArse I’m pretty sold on that evolutionary theory too....Tony Atwood actually suggests it once his work.

Unless there is a major trigger, such as vaccines, then I see no other way that the number of people with ASD would increase so rapidly....and being able to diagnose it isn’t the reason. People knew about autism decades ago and the numbers weren’t as massive then.

I'm uneasy with people, again, being told that they don't really mean what they say and that they shouldn't share their views on here. Their feelings are as valid as anyone's surely? No they might not have autism but they do have very real experience of raising an autistic child.

I've said it before but all this shutting down alternative views is anything but helpful IMO. It only creates further division when we're expected to shut up because people don't agree with the status quo.

This is why I've given up on support groups and forums because they are not welcoming places or supportive unless you agree to being censored.

I would like a post birth early days screen for autism, they are developing images of brain scans now and predicting which children will have autism. This will get support in place early and avoid the hassle of trying for years for diagnosis and getting kids to the point of suicide before help is given, if then.

I have a friend who has 4 children. 3 are in the process of assessment/diagnosis, the 4th is currently too young.
Although they are considered to be on the spectrum, 2 of them are in process of being diagnosed with ADHD and anxiety. 1 has extreme anxiety but doesn't fit the profile sufficiently for ASD (probably PDA but can't get that diagnosis).

My friend loves and adores all her children but she would definitely prefer for them to not have these troubling aspects of the diagnoses in their lives. Her oldest child isn't 10 yet and has had suicidal thoughts for the past 3 years. Anxiety levels through the roof. Self-loathing very high. Ritalin has helped but the child doesn't like taking it.
I don't think it is wrong for her to wish that her children didn't have these troubles in their lives.

I think that'd be wonderful BlackEyedSusan. I wasn't diagnosed until I was an adult(As is all too common) and I really think that my life would be considerably easier, though no picnic, if my autism and dyspraxia had been discovered when I was a child, and I might have been able to receive some help and support that could have made a real difference to me.

I don't either Thumbwitches. I would much prefer that any children I have did not have autism. Life is hard and stressful enough without having additional barriers to overcome.