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.

I mean that it would be nice if people could understand that a parent can be so upset by the day to day difficulties their child faces that they are indeed allowed to hate autism.

Even if it's not the autism per se that causes the difficulties, but the challenges of living in a world which isn't set up for them?

When I first told my parents I was gay they were very upset by the day to day difficulties I faced or they thought I would face - highlights included "it's a very lonely life" and "you'll never have children." And back at that time it wasn't entirely inaccurate either as a portrayal of gay life. Would they have been ok to say they "hated homosexuality"?

PotterBot. Metaphorically and literally shit!

I'm sorry, Laura, but it really is the autism causing the problems.
Are you saying that society should adapt to a child being constantly violent towards others? Constantly screaming? Banging their head until it bleeds? Having to wear reins at 5,6,7 because otherwise they'll run into the road? Never sleeping? Being non verbal?

My younger brother has autism and there were really crappy days growing up. I hated it then and there are still days when it is crappy.
Not sure I'd change it though as for me I've known no different since I was seven and the thought of changing my much loved brother horrifies me but still sad he's going to be a three or four year old in an adult body forever.

*I mean that it would be nice if people could understand that a parent can be so upset by the day to day difficulties their child faces that they are indeed allowed to hate autism.

Even if it's not the autism per se that causes the difficulties, but the challenges of living in a world which isn't set up for them?

When I first told my parents I was gay they were very upset by the day to day difficulties I faced or they thought I would face - highlights included "it's a very lonely life" and "you'll never have children." And back at that time it wasn't entirely inaccurate either as a portrayal of gay life. Would they have been ok to say they "hated homosexuality*

Im sorry but I really can't be bothered with this.

Laura did your gayness stop you living an independent life? Hinder your ability to communicate, express yourself? Autism can. Did your parents have to fight for every single thing for you? It's a shit comparison.

It is hard. People give DD the most horrid looks when she is making her silly noises and I just feel defensive and helpless.

My brother's autism was even more severe as he is entirely nonverbal; my daughter though can say some things, confirm some things, demand specific toys now rather than just helplessly yelling herself sick.

I try to celebrate everything she can do and not compare her to anyone else but I do get pangs of emcy when I see kids half her age having conversations and playing complex games.

She can be unexpectedly sweet and have flashes of understanding that take my breath away.

I don't understand the Holland thing, though.

Laura did you being gay lead you to live in a body that was two and a half decades older than your mind?
That is my brothers reality.

Laura... no words to describe your idiocy.

Mothers (and dads and sisters and... ) who deal with autism and try to win through to their own darling child on the other side of it... it's good knowing you're all out there.

There is no comparison whatsoever between being gay and being at the severe end of the autistic spectrum. In fact, imvho, there is no comparison between the 2 ends of the spectrum either. That's not st all to say that children, and adults, with HFA don't face huge challenges in life. They often suffer from extreme anxieties and extreme sensory issues. They have social and peer issues snd essentially are expected to function in mainstream school and the NT world. They are still children with a disability but their (many) problems are very different and I know many mothers of HF children who see their child and their child's autism as intrinsically linked. I see my child as being severely mentally disabled. So yes, I fucking hate it.

For those of you saying that autism doesn't make you unhappy, I wonder if the autism you are dealing with is in any way similar to the autism I, and many others deal with daily.
-Are you constantly bruised and battered?
-Are you constantly trying to protect your other children from violent outbursts?
-Does your child sleep? Mine does for a maximum of 2hours at a time. Then it's st least 2 more hours before he'll go back to sleep.
-Does your child scream like a wounded animal every morning when you try to dress him? Does he then strip back down naked again repeatedly.
-Does your child scream hysterically at light being on, or sometimes off hmm
-At the television showing something different st the weekend?
-At the postmanbeing a different postman from usual
-Is he still in nappies?
-Does he like to smear the contents of those nappies?
-Does he like to lick things? Door handles, lamp posts, photo frames, shiny things?
-Does your child make it impossible for their siblings to have play dates? Or eat out? Or enjoy a holiday?
-Is your child verbal? Mine barely is and as he's now almost 5, it looks like he never will be.
I'm sorry if all this is true for you too and yet you still don't hate autism. But I think for some of us, hate is too mild a word. I know I don't hate my child and I sure as hell hate something.
I say Autism doesn't make me unhappy and yes I have dealt with all you have said and much more. I have dealt with urinating everywhere. Finding bins toys boxes ect ruined from it. Sleeping no more than a hour a night. Extreme rage being knocked out from flying objects. Only in the last 6 months he's actually no longer soiling he's 12 in 10 days.
But you know what I have also dealt with him being extremely clever. His quirky personality. The fact he doesn't give a shit how people see him if it makes him happy he's going to do it and his sparkly beaming eyes and hand flapping let me know this. I think when it comes to Autism people can get so hung up on negatives. it's not all bad. It's not always autism either. There's many conditions/issues that many people have that creates these issues. How can we honestly say taking autism way can solve all these issues. Many people have anxiety sleep problems hate crowds ect but don't have Autism. Autism makes us think differently that doesn't help these issues but doesn't necessarily cause them.

At the moment, pretty much everything in life is geared up for Nts' needs, and autistic people are expected to fit in.
It wouldn't be difficult at all to make the world easier, but that would mean looking at many things from an autistic point of view.
Primary schools tend to be a nightmare, noise, bright colourful displays covering every square inch of the walls, reward schemes designed for NT children, break times without the option to to sit quietly somewhere.
Shops with music blaring out, tills bleeping, moving products around with no warning, discontinuing products with no warning. If you do something to protect yourself, like wearing ear plugs or sunglasses, you get funny looks or comments (although ear plugs help with that one )
Dr's waiting rooms have music playing.
Cinemas - so loud! I can't understand why they need to set the volume that high.
Gyms and swimming pools - more music.
Loads could be changed without any loss to the world. I wonder if an accumulation of calmer classrooms and quieter public areas would have a positive affect on our DC, but the odd times I've suggested change, people look at me aghast that (shock horror) there should be small adjustments made that will only benefit a small percentage of society

I certainly get how hard it is, but I will not say I hate autism because it is never going to go away, there's no known cause, there's no cure.
In 10/20 years time, if Ds happens to read stuff online about autism, I would hate for him to come across anything that he could interpret as parents like me saying they hated his autism, which is easily read as hating him and how he has made our lives worse.

I do get the need to have a moan about life, but would it be possible to do it without saying you hate the thing that arguably makes us who we are?

I love my dc. I have 2 with high functioning, 2 with severe speech delay and youngest being investigated for autism - highly likely. Eldest daughter I think is nt but I'm often doubting that too.

Autism has changed our family, we home ed now all 4 dc, I couldn't face trying another school or sending them everyday with little to no support and eldest dd being bullied because her brothers are 'weird'. Too high functioning for a school that is actually able to help and not able enough for mainstream school.

Dh has to work away to support us on one salary so I'm on my own 8 months a year 2 months alone and hopefully a month with dh back, although that's sometimes less when it's busy.

Buses are out of the question but the subway and the train are sort of ok.

Constant siren noises and the octo-alert. Stimming and head rocking, violent outburst and screaming. Obsessions and odd routines that need observed. Funny mistakes over idioms and funny mistakes when I've misunderstood something, this is easier then it was as the ds just laugh at me now, especially when I can't get pick up what they're saying.

We now have no bed time, no morning wake up, no meal time. We do school work between 11-9pm when it suits them and I'm no idea if I'm doing the right thing ever. I'm feeling my way as if in a dark room.

But it's easier than when we fought school, fought bedtimes and everything felt as though we were loosing the battle. Now the dc are happy and relaxed and amazingly they sleep between 1am and 9am thanks I think to weighted blankets, long may that last and thank goodness for the charity that provided them.

Hoping to try a holiday soon. I'm not sure I hate anything about autism but it's darn hard and really exhausting.

ObiWan do what is best for you and your children. So much changed when my brother came along but my mother still runs life at a different beat for my brother. Nowt wrong in that. I think we are all feeling our way in life.

For those of you saying that autism doesn't make you unhappy, I wonder if the autism you are dealing with is in any way similar to the autism I, and many others deal with daily.

No, I'm much more like Potter's DD. I'm still oblivious to other people taking the piss out of me and giggling behind their hands, although I know it happens because sometimes well meaning types come and tell me because they feel i "ought to know." I don't know why they feel I ought to know as I'm happier oblivious to it and I don't really care, knowing just makes me anxious.

I do many things (apparently wrong conversations with bus drivers included, i had virtually the same conversation with a bus driver that flirty describes her DD having, had no idea this was wrong but hey ho) but I don't giggle at people behind their backs.

[To the people who don't like my comparison - I'm gay AND autistic, they're not mutually exclusive - it was the reaction I was comparing, not the actual characteristics]

I hope you have a better day tomorrow Potter. Your daughter is lucky to have you especially if her dad doesn't think there's anything wrong.

Meme, I'm genuinely happy for you if you are able to rise above the hate and say things like, 'people can get so hung up on negatives. It's not all bad.' To me it is 'all bad.' I don't know if I feel it more because he is ds3 and I had 2 NT sons before him. Ds2 is a little quirky but no more so we had a relatively carefree family life. Ds2 is also 11 so I had 6&8yr olds when ds3 was born. We had done a lot as an NT family of 4.
I can't see it as part of him. I just see it as a hideous condition that has stolen him. He cannot help his aggression or the fact he doesn't sleep. It's not his fault that we can no longer do 'normal' family things. I love him But I will never celebrate the Bastard that is autism.

DS has autism and he can never cope with mainstream cinema, only the autism friendly screenings. Thing is, he's 18 now and definitely doesn't want to see all the animated films they tend to show, he'd like to watch X-men but that isn't offered as an autism screening around here.

Being a parent carer of a child with autism is hard, thankless work and utterly exhausting. DS has had different issues over the years but he's had meltdowns in all sorts of environments, been excluded from school, got arrested, suffered with depression and become suicidal.

I think there are a lot of self-diagnosed people who are very highly functioning/achieving who really underestimate how severe the symptoms of autism are and how devastating it can be. DS has even had to deal with sceptical Jobcentre staff expecting him to look for any job and mentioning university professors who are autistic, as if that's a reasonable comparison.

Longchalk you are describing my ds at 5, if it gives you any hope he learned to talk at seven,he toilet trained at 8 and whilst he was diagnosed with extreme challenging behaviour alongside his autism diagnosis his report from a mainstream secondary school describes him as having exemplary behaviour and a great role model for his peers. He really is a delight now at 21 and has been for many years. Yes he still doesn't sleep much, tends to settle about 4am and gets up at 6.30am but other than having to remind him of the bedtime rules( ie you don't have to sleep but you do have to let the rest of us sleep) very regularly his biggest fault these days is never taking the plug out after his bath
Had I known how he'd be later on I don't think it would have been quite so difficult and heartbreaking early on tbh.

Yup hate it too
Worse thing is comparing.....

Phil, do you find you are autism? Not trying to be rude but curious. I like reading but I don't define myself as being a book worm. My child has a personality. She's funny, sparky, feisty but she isn't autism. I don't introduce her saying 'meet my child autism...oh and her name is small queen'. She likes ponies and angry birds but she isn't defined by autism that's not what she's about. I hate all the struggles her autism causes her. That if she isn't first in a line she goes into meltdown to the point she's so hysterical. Or when at school she gets so stressed she screams and cries under a table for twenty minutes that is the fucking crap I hate. I don't hate her, I adore her but I hate the struggles she has. I hate that she feels different. I hated that I felt different.

Laura, you are clearly articulate. I wonder if the nature of your autism means that you find it difficult to comprehend that autism can be different from your own experience. I don't mean that to sound condescending or patronising but I wonder if you imagine, as I have heard some HF adults with autism suggest, that those who are non-verbal are non-verbal by choice and we shouldn't be trying to force them to speak. My DS is not non verbal by choice. He is non verbal because unlike yourself, his autism is severe and he has LDs too. He will never be faced with an awkward bus conversation, or tell us he is gay. He will never worry that he doesn't get social nuances or struggle in the NT world because he will never live independently or be able to participate in life fully in the way my NT children will.
I'm not at all dismissing your own disability. I don't pretend it's in any way mild or easy. But DS's disability is a whole different kettle of fish.

Actually I think people having the chance to talk like this and say how tough it is is very important. I remember going to sibling support groups as a kid where everything was so happy clappy and "how wonderful autism is!". Was fucking useless to me, I felt stifled and like I should blame myself for his behaviour not being in this perfect autism ideal. People need to be able to vent and let out the pain.

Insan1ty, thank you. Thank you. Thank you. I can only hope for such an outcome.