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.

He would be babysitting his younger brothers instead of attacking them. I have the opposite. Dd1 is old enough now to sit with dd2 for a while so I can run errands etc, but I could never do it because if dd2 has a meltdown dd1 wont be able to reach her, and dd2 is too strong for dd1 to physically restrict from her self harming behaviors.

I see how friends their similar ages children to go to work for a couple of hours, and I know I can never do that!

I am not even sure if I can ever leave dd2, because if things don't go her way she melts downs and self harms. What if she hits her self too hard, or finds those sharp implements. I feel it has robbed her of the joy her sister gets at being able to spend a few hours at home by herself.

I don't think anyone is writing anyone off, or wishing you didn't exist etc. I do understand why it could feel like that, but I think we all need to be aware that autism, either living with it or living with someone with it, or both is hard going at times. And at times, parents of autistic children are on their knees.

This thread was started by someone who wanted to reach out. Who needed to get her feelings out, and probably get some empathy and understanding. Perhaps she turned to MN to avoid an outburst at home? I know I had my own meltdown at the weekend, I hyperventilate and sob.

Op isn't wanting any one you with autism to disappear, to not have been born. Right now, she just wants it out of her life for a bit. I get that. I REALLY get that!

By admitting that, she isn't saying she hates anyone, or her son, or wants anything bad to happen to anyone. By agreeing with her, empathizing with her, going a bit further (in the case of one pp) saying that she wished they could screen for it, no one is doing or meaning anyone here any harm or malice.

Please allow our place to vent without telling us what you think we are doing, or what you think we are thinking. Please do not see what isn't there in our words or actions. And of course, you deserve the same respect too.

Haven't yet RTFT, but I totally agree. Autism has ruined my DD: she is destructive, severely unhappy, has OCD, is angry, anxious and struggles to communicate well. The effect on our family has been pretty awful.
I'd "cure" her in a heartbeat. And yes she'd choose to be cured herself if that were possible.

I agree completely, it’s the question of testing for autism as an option for termination which makes me enormously uncomfortable. And a little bit sad if I’m honest. Not having a go at anyone, just my personal opinion.

Yeah - I feel the same tbh @notreallyarsed (& I am NT with a severely autistic son).

I agree notreally especially given even if you were told “yes there is an x % change your child has autism” or even if it was able to 100% say you still wouldn’t know what you would be terminating.

I remember when the topic of autism first came up with School soon after ds had started the teacher said “don’t forget when you have met one autistic person you have met one autistic person” as this thread shows no two stories are the same, yes people have similarities and similar patterns in their problems but many are adults who are largely happy with their lives as they are now and many have children who are coping well in their own ways.

Ds is 8 and we are a bit of a crisis point now. But until about 6 months ago he was happy in his own way and hopefully when the support I am fighting for is in place we can get back towards that again.

I would happily eradicate some of the co-morbid issues such as the anxiety and the self harm but not necessarily the autism itself.

Now what I would like is a blood test which can say “yes you are autistic” to save all the fighting and battling to actually get to the point of diagnosis.

@HollyJollyDillydolly my DS2 was the same at 5. He did end up in special school and remains there.

In the seven years since he has learned to use the toilet, the interventions in school and at home mean he now doesn't get violent (doesn't mean he doesn't shout and scream and stomp about sometimes)

Please don't think everything's perfect. It isn't. He still doesn't sleep and needs supervision to keep him safe. But we are a long way from where you are now.

I'm not saying that will happen with every child. But things can and do change.

@differentnameforthis my comments about eugenics aren't for the OP. I genuinely sympathise as I have lived this as the child and the parent in the scenario. My comments are for those who genuinely want to have ante natal tests for autism purely to eliminate people like us.

@Sirzy exactly.
In our family we have five very different presentations of autism.

DH (undiagnosed but it's pretty obvious) probably couldn't live alone in terms of budgeting or knowing when to see the doctor etc but with me to tell him what needs to be done is fine and very supportive and well able to care for the children. He doesn't behave in any way dangerously he just can't interact with the outside world.

DS1 will live independently but probably a lot later than his peers. He like me is slow to mature.

DD same as me and DS1. I can see her having a family like I did.

DS2 will need at least supported living. He won't be able to look after himself so the plan is to get this in place when we are very much still around to support him and get him used to it before it's necessary- we don't want him thrown in at the deep end if anything happens to us and his siblings certainly aren't able to care for him.

Until you have lived my life Bishop, you don't get to judge me. I support any womans right to abort based on whatever she deems right for her, including her physical and mental health. That's why I would choose to test for autism if possible.

I would also be supporting more services and funding being made available for autistic people and their families. God knows what there is currently is thin on the ground. I don't want to see autism wiped out, I just know that for me, a diagnosis would bring up a huge raft of mental issues and past trauma.

If you want to call that eugenics, so be it.

Interesting.
I generally considered myself pro choice.
I don't however think anyone should be able to obliterate the autistic community. Too many variables, my family is a good example of that. So you'd get 'autistic' result and could end up with any kind of presentation.

Need to have a think about my views....

I suppose being pro choice also means you'd support termination for ginger kids too (before anyone says anything my daughter is ginger).

Maybe I'm not pro choice... I'm certainly not pro life under any circumstances.

Do I think that all ginger kids should be obliterated? No, I don't.

Do I think all freckled kids should be obliterated? No, I don't.

Do I think all kids with Downs syndrome should be obliterated? No, I don't.

However I do trust women to make the right choice for themselves, so I would support a termination for whatever reason they have. That is not the same as saying a social group should be obliterated.

@HollyJollyDillydolly if you need advice on appealing etc if you're DC doesn't get the special school place please pm me, I know of a couple of nationwide organisations who can help you.

“My” Autism has led to a life of confusion, isolation and feeling inadequate and “lost”. I’m not practical; can’t cook; am lacking coordination and feel very, very different. BUT, I had a job, family, a couple of friends and get by with full-on “masking” and lots of people on first meeting me, would have no idea. My son’s autism is very different and that’s why I fear for him, when I’m gone. Winterbourne View being exposed, was the stuff of nightmares, for me. I WISH DS had “MY” autism.

I think the disconnect in these discussions comes from the fact that autism can be such a different thing. And these discussions tend to attract two polar opposites of people.

On the one hand there are parents who are massively struggling and see hardly any 'perks' for their dc. There's sod all support for most of us and this on top of a crisis point/ or someone affected very badly by their autism at the time is going to make anyone despair and wish the situation away. Of course they will get defensive if they feel anyone is criticising them for having had enough (as they will most likely be beating themselves up for thinking that anyway)

On the other this sort of thread also attracts (usually high functioning) adults and often parents of children with autism, who have had years of being told they are doing things wrong and have just thought 'fuck you!'. They now embrace their autism and differences, and prefer to think of the gifts it gives them. (Not saying these people aren't struggling too - being high functioning doesn't make it easier - just different challenges) Of course they are going to get offended and defensive when they think people are saying 'Sorry, if my child was like you (had autism) then I wouldn't want them'.

I've wavered in between both groups depending on what day it is! But I think both sides have a point, and though we are both talking about the same thing (autism) it encompasses that many different experiences it's hard to understand the other side sometimes.

Personally, I think a 'screen' for autism would present problems. Unless it screened for a 'level' of autism, you wouldn't know how that child could be affected. And even then it wouldn't be reliable. Obviously as one of the mainly second group of posters I dislike the idea immensely, but I'm also generally a big fan for choice and bodily autonomy for pregnant women so....

Basically a long post to say I've got splinters in my arse from this fence

That's quite a good post @Shamefuldodger
I've been in both camps particularly before I really knew what autism was and that I myself had it.

@SukiTheDog winterbourne scared me shitless too... I keep telling myself it's been in the news because it's rare because I mentally can't cope with the alternative.

Autism is my biggest strength but also my biggest weakness.

@DixieNormas I can relate to that too. In the early days I had professionals telling me about the problems my kids would face not knowing I'd lived through it myself.

How they would have no friends, wouldn't be affectionate, lots of horrible things that simply aren't true.

I know not knowing is so hard. I feel lucky really.

my comments about eugenics aren't for the OP. I genuinely sympathise as I have lived this as the child and the parent in the scenario. My comments are for those who genuinely want to have ante natal tests for autism purely to eliminate people like us.

Lots of autistic people aren't like you. It's a big spectrum. I've seen the worst of it and would never, ever judge someone for making that choice.

@derangedmermaid I know that. I have examples in my family.

If I removed the difficulties then the diagnosis wouldn't be autism. I can't think of any perks. Even being detail oriented is a painfully overwhelming exhausting negative, it annoys other people and causes great social difficulty, wastes time and a huge amount of energy etc. I suppose you could try to say aspects of who you (general) are are positives but that could still be the case without autism.

How do special schools help for very sensory averse anxious asd, when in an environment with others who have unpredictable behaviours and outbursts etc? We don't use school yet but this had worried me for the future.

I also wonder what help is actually available, if you can't work or function 'normally' but are "HFA", as there is no cure for all the difficulties that come with it? For example, CBT wouldn't help with PDA and anxiety from autism, would it? So what happens down the line beyond diagnosis..

@prettypaws in DS' school it's dealt with by being an environment with as few people in it as possible if required. If sensory sensitivities are known they're actively avoided. Therapists visit the school every day - SALT, OT, physio and staff and kids have access as required.

It's far more holistic than mainstream.