To cry because I hate autism

[PotterBot]

Just took two dad's to the cinema. I checked 40 times at least with eldest dd about the film. X-men.

We lasted less than 45 minutes before we had to leave.

Too many people, too much noise and a film about the end of the world.

I feel like I'm doing it all wrong. Younger dd upset because she had to leave and wants to stay.

I know that in the bigger scheme of things dd could be so much worse and this could be so much worse, but right now I want to cry.

My mum thought I didn't hear / didn't understand what she said about me growing up. She was ashamed of me, humiliated by me and dreaded taking me anywhere. I heard her say all of this and boy did she like to say this to anyone who'd listen and it was easy to work out from her behaviour that she felt this when she wasn't telling people. I grew up hating myself and thinking (knowing) my mother hated me. I felt like shit. I was ashamed of being different and beat myself up emotionally and physically for not being the person my mother wanted me to be - I have the very visible scars to show for it. When I managed to articulate to her my knowledge of this she said "it's not you I hate it's just this thing that makes you do x, behave y, say z" That thing is autism and it is so intertwined into my being that it is me and I am it. The majority of autistic adults I've had communications with (many non verbal) say the same thing. It breaks my heart when I try to interact with non autistic people, to realise how much they hate autism, the thing that makes me the person I am. I probably shouldn't but it's hard not to take it personally.

I struggle with many aspects of life and I stay away from social situations if I can help it because I get that people hate autism. Boy do I get that every day and have done every day of my life. But I love autism. It makes me who I am. It gives me my talents and my quirks. Ehat I don't like is knowing the animosity towards people like me for not fitting in to the NT way of life.

Apologies Laura I thought you were just gay, not autistic.

It probably does LongChalk. I'm told I struggle with flexible thinking / putting myself in someone else's shoes, although I also struggle to say that because I don't think I do.

I don't think non-verbal people are non-verbal by choice though, that sounds like a ludicrous thing to say. I don't know the right way to phrase it but I'm sorry your son has so many difficulties.

Foofoobum, I'm so sorry your mum said those horrible things.

Msqueen that was put beautifully.

The people with high functioning ASD are clearly articulate enough to express their feelings; DD doesn't speak and these people certainly don't speak for her... or for our reality.

Thank you Katiekaboom
I'm not sorry tho because it gave me a benchmark for parenting. I have an NT daughter and I find her as confusing and obtuse and difficult as I'm reading many NT parents find their autistic kids.

Foofoobum thanks for your post.x

poppy
You clearly equate functioning with ability to articulate. In reality functioning is not a straight line on a spectrum. It's a jagged line where someone may be articulate (as I am) but completely unable to undertake many basic tasks. I can become non verbal very quickly. If I hear certain sound so cease to be able to think or function at all and become catatonic. Does that sound high functioning?

I'm not sure I hate anything about autism but it's darn hard and really exhausting

I hate the goings on in my sons head that caused him to split his head open on a door at home a few weeks ago during a 30 minute bout of self injurious behaviour that left him with a wound requiring 10 stitches.

I hate the goings on in my sons head that mean during a meltdown 2 years ago he ended up with a broken forearm that required 2 surgeries to repair.

I hate the fact that after a life time of travelling all over the world to see various steam trains he can no longer travel due to a deterioration in his mental health. Not that he did it alone. It was always with me, my husband or a sibling, but as his health deteriorated we employed carers and 2 would come with us. But now its not just possible whatsoever.

He's never been to school. I always did home ed with him though we have had extensive input from various people like Andy Mcdonnell over the years as to how to put things into practice for him. We use the low arousal method to get him though his day.

There are not enough weighted blankets in the world to help him sleep at night.

My son is 25 and lives with me in a custom built house that was built and designed to take into account his needs before anything else. He has a team of 4 carers who help me to look after him round the clock on a basis of 2-1 with another member of staff such as the gardener always being in the vicinity. My husband of almost 40 years (we're now separated) provides everything my son has as we live in a country where no provision means exactly that - no provision.

Next week my son will have a CT scan to see if we can pinpoint any damage to his brain that may have been cause by self injurious behaviour. He is also being investigated for Frontal lobe epilepsy. He is medicated.

My heart swells with pride and happiness when I see my son but I would take his autism away in a heartbeat.

I am NT and my DD is autistic. I do not hate autism. I do not want my autistic DD to be NT. I hate that the NT world is so hard for her to live comfortably in, but I would change the world - not her.

MsQueen, I grew up being different but not understanding why, I always felt a disappointment to my parents because I wasn't who they wanted me to be, I didn't fit in anywhere. Looking back, if I had been accepted as introvert, book worm, film addict, I would have been much happier as a child. As it was, I think they felt I should be more than I was, and the difficulties were worse for trying (for years) to fit in to others' expectations.

I'm not sure anyone could define themselves as autism, just as asking someone to define what being a woman is, i don't think it really is some definable thing, we are individuals, I feel like me, but there are other people like me who have similar struggles, so now, at a time of life when I now have a diagnosis, I have found the people I do fit in with, and I don't feel so different.
I think trying to define it as one thing is problematic, and leads to others expecting all autistic people to be the same, when we're not.

Looking back at my life, I can see how autism affected pretty much everything, there's no way I can imagine a life without it, and I can see how intertwined it is.
I don't think I would ever be happy clappy about how wonderful autism is, and I have plenty of weeks days where I don't think I can carry on, and everything feels too difficult.
Everyone needs an outlet, everyone needs to moan when things are hard, and it is hard, no-one can deny that, and you can't always see the positives, but some of these posts are very hard to read.

but some of these posts are very hard to read

Again, that works both ways.

Foof , I have no intention of belittling your challenges and if you don't identify as a "high functioning", then you don't.

DD's reality is very far from people who can articulate their feelings, so I don't think it's unreasonable to assert that other ASD sufferers don't speak for her or for our family.

The "if you hate autism, then you hate us" argument is just bewildering, frankly.

Longchalk ds is 4th of 5,we all have scars, some have had chipped bones,some needed stitches all inflicted by ds when he was younger.At one point I feared he would kill me one day because he had no limits.
But it did get better, we had dd when he was 8 (she has autism too) and he loved her from the minute he set eyes on her.He was always gentle with dd and he stopped hurting any of the rest of us eventually as well. He was diagnosed initially with moderate autism,learning difficulties and extreme challenging behaviour it felt really bleak for a long time but now I am incredibly proud of how far he has come and pretty proud of the rest of them too because they have grown up in very difficult circumstances at times but they are kind, tolerant and resourceful people regardless and they love ds (and dd) to bits

Foofoobum, I equate high functioning with cognitive ability and the ability to undertake (many) tasks independently. I totally understand that high functioning does not suggest the person's difficulties are not severe. U have met quite a few HF young people with quite severe and complex issues. But they are still able to function at a level far beyond my son.

Livvy, I totally get the sibling thing. I also have a 2.5yr old DD. She spent many hours trying to engage DS3 socially. It was heartbreaking to see her constantly rejected.

pretty proud of the rest of them too because they have grown up in very difficult circumsdIjI5q%a�jtimes but they are kind, tolerant and resourceful people regardless and they love ds (and dd) to bit

Yes.

My eldest 4 are fabulous people.
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Notonyur, I'm sorry if I've said anything hurtful, that wasn't my intention

Yes, I suppose it has instilled patience and compassion in my older boys and I guess in DD too. But then, I cry again because it had taken so very much more than it has given.
I'm having a bad day, obviously. I'm very chippy tonight, sorry.

longchalk you appear to have missed the point that I'm making. High functioning in reality means NT appearing. The more an autistic person can fake being NT the more they get labelled high functioning. Nobody suggests that what you term high functioning means no difficulties but I tried to explain why functioning is an arbitrary marker for severity. It doesn't take into account the realities for most autistic people. It's also important to point out that autism is not a learning disability and that many of the things being talked about as unbearable may be attributed to a comorbidity and not necessarily autism itself.

I hated feeling different even now wearing an nt mask is exhausting. The world needs to be kinder. But that probably won't change anytime soon. I don't so much hate autism as hate what it does to my kids. The behaviours that come with it. The screaming, the anger, the self harm. I hate my kids being sad, scared and fightened. I hate that mainstream education doesn't adapt for them, I hate that as square pegs they're having to be shoved into round holes. I love my kids quirks but I hate that with my preverbal child that she's so frustrated because she can't talk that she hurts herself.

I get sibling thing too. Was always close to Db but spent so much of my childhood scared or confused about why he would attack me and why I would be told off for crying when he did.
Strangely never hated him but did hate parents a little for not keeping me safe.

Phil, thank you.

Ive been reading these opposing views for about 22 years now, ever since I first got the internet, and the older my son gets the more I believe that we really can only speak of autism based on our own experience of the spectrum.

Threads like this show indeed what a spectrum ASD. My reality is that my DS's autism (he's 8) is so severe, combined with learning difficulties, that it's pushed our family to breaking point. His violent outbursts when asked to do the most inoccuous task, his extreme anxiety meaning he hasn't been in school for nearly 2 years (we trusted a special school to be qualified enough to understand him - he lasted 4 weeks - but that's another thread entirely), we haven't done anything as a family for 5 years. My DH & I work by the skin of our teeth thanks to wonderful employers, who allow extreme flexibility to accommodate the fact that one of us always has to be at home. My other 2 children have had to sacrifice so much normality because everything revolves around their brother and accommodating him. Despite his low functioning he's certainly aware that he's different. We love him unconditionally & tell him so daily, but it breaks my heart when he says he wishes he'd never come out of mummy's tummy, that he want us to go to the shop to buy a new him or that he wants to be like his NT brother. I don't hate autism, but the impact his autism has on our lives is immeasurable and as much as I love him, would I want a different life for him and us - yes (apologies for hijacking with a self-indulgent rant)

One of my children has ASD and sensory issues, another is being assessed for what is looking like the Aspergers type of autism and the third is just stroppy!
I would take away the sensory issues in a heartbeat. I've just had a row with my sister, who, with her one NT 13 year old daughter, isn't on the same page, and said that we lacked "adventure" because we always go to the same cottage on holiday. I usually just let things go but I lost it and ranted about how terrified we would ALL be if there were hazards that DS1 was attracted to. A pond, a well, a busy road, unfenced woodland, unfenced gardens, open fires, farm animals etc, would all the the things that DS1 would shoot away to investigate. And whilst looking for him for the millionth time (because social stories about running off aren't working) the other one of us has to manage the two younger kids, who are also tricky. And that's the bit she won't get - how utterly fucking limiting and exhausting it is, to have to factor all this in before we can do anything. But apparently we lack adventure. I want to batter her with her fucking passport, and ask her about desperately looking for aged 10 nappies in a fucking blizzard miles from anywhere because DS1 has used all his and destroyed the spares. That, is a fucking adventure.

My son is a happy, cheery chap. He's mostly verbal, very creative and I assume as an adult he will report that he doesn't hate his autism etc etc. And I confidently predict that his lack of Theory of Mind will make the incredible stress and struggle me and my husband face daily, simply fade away.