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.

Me too. I have 2 dc's who have autism/suspected autism. Eldest is high functioning and youngest I'm not sure as he is still only little. With the eldest I think he is perfect but I wish I could change the world for him so he would find things easier. Youngest, I feel like he is trapped inside a glass box with tiny holes in. Sometimes I can get glimpses of what he could have been without the autism when he occasionally smiles, hugs me or says a couple of words. But mostly he is a biting, scratching, escaping, self harming bundle of anxiety and I can't reach him. To me, autism isn't a part of my youngest's personality. It's a parasite, taking over my boy and trying to strangle him. With my eldest it's different. His autism is smaller and more manageable. I wouldn't want a cure for him and nor would he. I just want other people to be more accepting and for other children not to bully him.

Autism seems unique in that is provokes people to write books with titles like 'Why I would rather my child had Cancer than Autism', expose their children to deadly diseases rather than take the non existent risk they will get it yet you also get people bullying parents into 'loving' ASD and great long romantic blogs going on about how fucking wonderful it all is.

What does a middle class, well off, white, university educated woman (for instance, not targeting anyone on here) know about my black son's with LDs, living in a low income family life?
How can they possibly tell us that being autistic is amazing and to embrace the quirks.
I love his quirks. I am happy to embrace them.
The eating disorder, violence, destruction, selfishness and over riding anxiety, not so much

If he wasn't autistic I wouldn't be worrying about finding the money for a new bed, chest of drawers and wardrobe EVERY year now he is going to be old for a family fund grant.
I would have to stay up till 1am because he doesn't want to go to bed even though I have to work the next day.
He would be babysitting his younger brothers instead of attacking them.

I love him. I love that he is different and talented.
Yes he does have an autistic 'superpower' but BECAUSE he is autistic he isn't where he should be with it. If he wasn't autistic the chances are that you lot would have heard of him by now because he is the MOST amazing rock guitarist and has been since he was about 12.

Admittedly that part is all about society not being set up for ASD but its still real.

I am very pleased that there are so many on here who have found their place with an ASD diagnosis. I mean that completely sincerely.
I can only hope my DS is as lucky but statistics for his class and race along with his dx say very different.

The white ,well off university educated women knows nothing about our life either and my son's white, autism for us isnt amazing and quirky my child is severley autistic and has learning disabilities he will never be independent i love him to bits and he makes me smile every day but it isn't a life I would choose for us .

@Slanetylor I can only answer for me, not every autistic as what triggers me wouldn't trigger others.

My perfect world would be where halogen strip lights were banned. They hurt my eyes and buzz and hiss. In shops etc bright white lighting banned also. Replaced by LED daylight levels of brightness.

Much more consideration of personal space. Don't cram and push in. At concerts have far fewer people in the floor space. Let people be able to breathe.

Much less rushing and hurrying. Consider some people need more time to process surroundings.

Patience. Someone may need time to process what you've said and may need you to repeat it. Please don't get exasperated, it'll put my anxiety into overdrive and make it harder to talk and start a vicious circle.

Keep outside spaces simple. Lose the A boards, posters etc. Makes it easier to process and not have so much 'stuff' distracting you.

Like I say that's my idea of an easier space to live in - might be another's idea of hell.

I'm not aware of any autism communes but my house is. All five of us in a little unit minding our own business - it's so much easier within our own walls. The neighbours call us the freaks as we won't stand around and gossip and we have had criminal damage done to our property as they consider us weird for wanting to be left alone which is hard as it really isn't personal towards them.

YADNBU diagnosed with Aspergers myself and waiting for assessment for my DD. I would give anything for her to not have to go through what I did. I can't imagine how hard it must be with non high functioning varieties :(

You have my utmost sympathy

Bishop everything you listed would help ds too.

Loud music in shops is a problem for him, it’s another thing to process and he can’t block it out like the rest of us.

Narrow aisles in shops and supermarkets.

Our nearest supermarket is asda but if I have to go shopping with ds we aim for Tesco as for him that is a much better environment - quieter and light and airy compared to the local Asda.

Hand dryers in toilets are another one, especially automatic ones which mean when I am fastening him back in his chair in the tiny disabled toilet it is practically impossible not to set it going with my bum meaning guratneed meltdown. Surely someone can invent a quiet hand dryer by now (or just use paper towels..)

Yes to all that too, sirzy

This thread has been so helpful, mainly because I have been struggling so much with the emotions I have surrounding autism.
DH and both DC have ASD and I would take it away in a heartbeat if I could.
The anxiety, OCD, mysophonia and meltdowns are beyond exhausting for all of us and family life is HARD.

TheFirst That’s horrible. I can’t believe someone wrote a book “'Why I would rather my child had Cancer than Autism”. Cancer is horrible, no way would I wish that on my child.

I would not take away ds autism but am aware I say that from the perspective of a reasonably well off woman with engaged and supportive dh.
All perspectives are valid, I think. What is not valid is people who don’t understand the situation preaching, pitying or patronising.

Ive even had people saying on my fb how well my ds can do because of this famous person had autism.
My son (11) has not been able to go to school for over a year and he has moderate learning disabilities!
He can not get himslef dressed without help so these sort of posts on fb do not help!
Also my 16 year old with ASD who can not go out alone, can not ask for things in shops ect (he has an amazing iq) but can not function enough to use it.

{flowers] to you all. Such honest posts. It's particularly awful to read of the ignorance in schools. It is a great problem that generally people think that autism is a sort of homogeneous condition.

DD, who is nearly 7, goes through phases. She's currently sleeping well, eating well, enjoying school and not having too many difficulties using the toilet. There's occasional battles over getting dressed or getting ready for bed but overall, she's happy and content and I wouldn't change a thing.

Yet when she has a bad patch, it's bad. She'll physically attack me, getting her to bed can take hours, she'll soil herself multiple times a day and worst of all, she'll seem constantly upset and distressed. By the end of these patches, which can last weeks, I'm barely coping and wishing with all my heart that I could take her autism away.

I'm a bit confused by one of the first comments 'I quite like my autism'. If you're just yourself and autism is a collection of difficulties/traits - then what is it you like and how do you know what is just part of your personality and what parts of your thinking are autism - especially as you haven't been in anyone else's head to know the difference. (For us, ASD was discovered due to all the difficulties in coping with life).

Hopefully that makes sense to someone?

All this "it's a gift" confuses me. Perhaps I'm missing something.

I fully agree with bright lights and loud music, we’ve just been to a trampoline place for DS1s birthday and I am approaching meltdown, so I’ve taken myself off for ten minutes to just keep my head quiet.

Strong smells affect me, especially cloying thick smells like cinnamon/cloves. Bad smells make me vomit, it’s not something I have any control over, so I keep a cotton hanky in my handbag with a few drops of rose oil on to combat it.

Crowds and pushing in queues overwhelm me completely.

I’m confused by people who say autism is a part of them. I don’t get it. You’d be the same person but without the processing issues.

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 don’t think it’s fun, quirky or charming. I think it’s a ton of worry, fear, tiredness, tears, anxiety and hurt. I don’t hate autistic people. I hate how autism effects my children. How their lives and by default mine is changed. I had a lot of dreams. None of them will likely been seen. I can’t work. It’s unlikely we’ll be able to travel because we don’t have the money because I can’t work and because the kids find travelling very scary and hard.

I’m confused by people who say autism is a part of them. I don’t get it. You’d be the same person but without the processing issues

It’s not that simple though, my whole brain is autistic, the thoughts I have, the way I approach things, my emotions and reactions are all autistic. So if I wasn’t autistic I don’t know who I’d be if that makes sense? It’s perfectly normal (I hate that word but can’t think of another) to me because I’ve never known any different.

Just as one example, I didn’t realise that nobody else sniffs a new book before they’ve opened it to read it. That’s just me. Is it because I’m autistic or is it a habit? I don’t know, I can’t separate autism and me because they can’t be separated. The good bits and the shit bits.

I just read that back and realised it might come across as combative, it wasn’t meant to. Sorry if it did.

I wish I could make life easier for my children though. I wouldn’t change them, I’d change the way they are perceived in the world and make people less judgemental and more open to learn.

I think, for me anyway, it's because my autism can't be separated out from who I am.

It's the reason I think the way I do, why I do the things I do, why I am the way I am and who I am. I feel that I'd be a whole different person and I wouldn't want that for myself.

Though I'm sure if you asked my DM she'd say different. She's made it quite clear that she wishes I wasn't who I am. I understand a bit, I think.

@prettypaws my logic, my attention to detail two things I can think of on the spot that I wouldn't have without my autism.

I also agree with @Notreallyarsed my autism is me. The way I see the world, my personality, everything. They can't be separated.

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.

Yes, I agree with you here. If a screen is developed in future I'll be first in line to have it.

Someone always seems to come along and say that you could have a child with mh issues, or one in a terrible accident etc etc. Which is very true, but it doesn't change anything for me.

@bishop
That's how I think about my DS too. There isn't a non autistic "Alfie" ( not his real name) that if I could scrape away the autism would be revealed in his glory. He is autistic, he doesn't have autism. It's all of him, in every cell, right through. I could scrape away some of the troublesome things, like him not being able to speak to new people, or having to leave any gathering once it gets bigger than about 6 people....but I couldn't imagine what or who would be left if the autism went.

Hmmmm lovely. Shall I start a thread debating eugenics for something unavoidable about you too?

If a screen is developed in future I'll be first in line to have it.
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?

the penguin analogy

This might not be for everyone, but it really helped me. In a world full of sparrows, I’m not a crap sparrow, I’m a penguin.

Holy shit. You’re not a failure. You’re a penguin. You’re not lazy or stupid or weak. You don’t have messed up values. You’re a penguin. You have always been a penguin.

There’s nothing wrong with you, you’re a beautiful penguin. The most perfect penguin. But it’s just a fact, penguins can’t fly.

This is the bit that really stood out for me, realising that all along I wasn’t able to be NT or understand NT things because I’m not NT I’m autistic and I’m exactly how I’m supposed to be. It was a real lightbulb moment.