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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

To cry because I hate autism

261 replies

PotterBot · 03/06/2016 16:10

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.

OP posts:
livvylongpants · 03/06/2016 22:24

This reply has been deleted

Message withdrawn at poster's request.

insan1tyscartching · 03/06/2016 22:26

I think the parental guilt is another of the trappings of having children with autism tbh. I blamed myself for ds's autism,I blamed myself for not being able to stop all the violence, I blamed myself for my other dc's having limited lives as a result of ds's difficulties.
But now the older ones are adults we talk about how life has turned out and they don't feel at all resentful of the years of little attention.In fact ds and dd say they are quite glad in a way because I can be bloody annoying and overbearing so he kept me occupied and allowed them more freedom Wink They just see him as their brother nothing more and nothing less than that really.
We did do a lot of things separately though so dh took the older ones on holiday every year and I stayed at home with ds because the holiday with ds each year catered to his needs,their holiday was for them. Likewise with activities and days out it would be with one parent rather than as a family as a whole so maybe they don't feel they missed out too much?

LongChalk · 03/06/2016 22:33

Foofoobum, I didn't misunderstand. In fact, thats exactly what I was saying. That high functioning and severity do not correlate in any linear fashion. Many HF people are severely affected by their autism. Likewise, I know a few children who are considered low functioning because their cognitive abilities are poor due to learning difficulties but actually, they are actually quite easy going and passive and they never suffer from any form of anxiety. They will never be independent or attend mainstream school or gain qualifications or marry but perhaps in terms of day to day living, their issues are not as 'severe' as someone with HFA trying to cope in the NT world.

dietcokeandwine · 03/06/2016 22:36

I get the sibling thing too. Ds1 has to deal with the fact that his two little brothers are NT and just 'get' social nuances (even at 6 and 3) in a way he simply can't at nearly 12. It's excruciatingly hard for him, and I worry about his fragile state of mind, constantly. And it's hard for them, too. It's not their fault they're NT, any more than it's ds1's fault for having Aspergers.

The challenges of juggling the needs of my three DC overwhelm me at times but I am acutely aware, reading through, that many on this thread deal with things way way harder than what we have to cope with as a family. What comes across so strongly is how hugely different are the difficulties people face - either as the parents of children on the spectrum, or as people themselves on the spectrum.

Wine Brew Cake to all.

Gingeete · 03/06/2016 22:38

Love the Holland references. Made me laughGrin

livvylongpants · 03/06/2016 22:39

This reply has been deleted

Message withdrawn at poster's request.

notonyurjellybellynelly · 03/06/2016 22:43

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

Id been trying to work Theory of Mind into a reply regarding some of the replies here but its just such a minefield and at almost 60 Im almost all autismed out apart from looking after my son.

Idliketobeabutterfly · 03/06/2016 22:44

Livvy. It will get easier as they get older. I found as a sibling my salvation was things away from the house that had nothing to do with my brother.
But on flip side it changed my life and made me a lot more tolerant and easier to see world has lots of different people which is a great thing to me.
(Although suspect I'm on spectrum so not sure if that has more to do with it too)

LongChalk · 03/06/2016 22:45

Oh God the tiredness...

dietcoke, we have a lot of shit to deal with at our end of the spectrum but I'm thankful not to have a child facing severe anxiety or depression faced by many children like your DS. Flowers It's not a 'functioning' competition! Grin

knittingwithnettles · 03/06/2016 22:46

I just wanted to say to the OP that ds1 (who doesn't have autism, although he is dyspraxic), an obsessive film buff, came out of the X Men and said he thought it was really a bit too violent and loud. Dd told me it was boring and noisy and she just tuned out (she is NT) So maybe your dd, the one who wanted to leave, was really quite sensible. Well done her for putting up with 45 mins of it! Ds2 who has ASD wouldn't have even gone to it in the first place. I think as a film it was probably over marketed and overrated. Thanks

insan1tyscartching · 03/06/2016 22:59

Livvy dd has autism too so never picked up on the fact ds didn't want to or wasn't going to interact with her she pestered him relentlessly until he did. It was a good thing for him too as the older ones were always very accommodating of his needs whereas dd just demanded more from him and he learnt to share,to come second, to let her needs come first as a result. She knew from being tiny though that ds needed extra help, she used to say it was because he was special one of her first "real" sentences was "come here my boy, let me help you" as she fastened his buttons for him.

ouryve · 03/06/2016 23:06

We're certainly seeing this, LongChalk.

DS1, highly intelligent, apparently high functioning, able to have the right sort of conversation with the right people. Mute with strangers, though. It would actually be lovely if he could have any sort of conversation with a bus driver, since he loves buses. His anxiety is such that he can't even bring himself to post on a local enthusiast forum, though. Many of its members are at the high functioning end of the spectrum and they all have day to day difficulties of some sort, though some are a lot more self aware than others.

We struggled long with mainstream until year 5, because we had no other viable option, before then.

DS2 is 10 and was non-verbal until a couple of years ago. His speech is coming on in leaps and bounds. In fact, he's started to put words together, so today, on one of our outings, we had "Diamond Bus" and "Green Bus" and all manner of imaginative next stop announcements. The next stop was grandma and granddad at least a couple of dozen times Shock Being able to take them both on the bus has made school holidays so much better (if quite expensive as buses here are not cheap), though we went through a rough patch during the winter when it was impossible because he'd either be scrambling to get to the bell pushes or screeching at his brother, trying to get a reaction from him. Unfortunately, the DDA requirements which came into force for single deck buses, this year and which will apply to double deckers from next year mean that it's virtually impossible to avoid a bell push on many modern buses. Bloody typical!

We have noticed, in the 2 years that he's come out of his shell, that his anxiety has increased, though. He's also getting bigger and harder to manage. I looked up to see what was on the screen that he was looking at, this afternoon and he quite forcefully pushed my head down again because he didn't want me to look at it. Not nice, since I have arthritis in my neck. When he's anxious, he's really quite intense in his goading of his big brother, who his hard to keep calm, unless I point out that, if he wants to go out to xyz on the bus, I need to be confident that he's able to keep his cool. It usually works, but sometimes he's gone beyond the point of no return and he's terrifying when that happens.

I don't hate autism, per se, but it doesn't half make life complicated. DS1 sometime decides he hates it. He also hates having to take medication to control his ADHD. It's a demand made on him and demand avoidance are his middle names, it tuns out.

GuiltyPleasure · 03/06/2016 23:13

LongChalk I went on a course a few years ago for parents of autistic children. The competition was intense with people telling stories to "prove" their child was more autistic than another Confused

wizzywig · 03/06/2016 23:25

Reading this I feel like ive made a huge set of online friends. Thank you for not making me feel alone

LongChalk · 03/06/2016 23:27

ouryve, yes, I can see how debilitating the anxiety must be for your DS1. I guess for many children like him, the anxiety is the most disabling part of the disability.

I often wonder if parents like yourself who are in the position where both/all their children are on the spectrum find it easier not to have to think of NT siblings. But then I guess not because you have double the asd trouble as it were. I just feel a constant sadness and guilt towards my older 2. Although I'm not sure I'd feel the same if my asd child was the eldest because I feel far less guilty towards DD as she is younger than him. I just regularly stop and think how different their life would be if I hadn't been selfish enough to want another baby. They are growing up with stressed, snappy, sleep deprived parents and yet due to the 6yr gap they both remember times and holidays before ds3 came along. The guilt is so strong. Insan1ty, I wonder if you feel the same as your older two are also NT.

Theydontknowweknowtheyknow · 03/06/2016 23:34

What I hate the most is parents with "normal" kids giving you advice and solutions that would work with their kids but don't work with yours Angry as if you haven't gone through all that already anyway.

And the worry about their future. Will they ever fit in? Hold down a job?

LongChalk · 03/06/2016 23:35

Guilty, really? I don't recognise that from the mums I have met.
I absolutely think that my DS's problems are very different from those faced by a child like ouryve's ds1. And I may be guilty of describing my son as more severely autistic than a HF child. However, that doesn't mean I think he is more severely disabled. I have already said that it is quite clearly how horribly debilitating severe anxiety can be. These children are expected to cope in the NT world in a way that my DS never will be. These mothers need to worry about depression and suicidal thoughts and nasty bullying etc. Very very different but equally challenging I'd say. My life is complicated and drama ridden enough without partaking in bullshit oneupmanship.

ouryve · 03/06/2016 23:35

It's getting tough as they get older because the animosity and resentment between them is becoming quite extreme. I am quite thankful to not have any NT kids to deal with (NT kids scare me a bit, actually, with their conversation and friends and stuff!) but their needs with ASD are still very different.

We get through weekends by me taking DS1 out on the bus (train tomorrow - up to Edinburgh to look at their buses) and DH pottering around with DS2. DS2 enjoys visiting grandma, while DS1 loves his grandma but doesn't like going in her house. DS2 also enjoys pottering around in the garden and with DH doing DIY, though he might appropriate half the bits he needs and, in the garden, DH has to put a lock on the gate in case DS2 decides to go walkies.

I does mean that I hardly ever get to see DH when he's not nodding off, though. And, DS2 tends to make up for lost time and follow me around to get me to repeat all his spellings and songs, as soon as I get home!

PotterBot · 03/06/2016 23:36

What are you talking about theydontknow haven't you tried sticker charts or time out? Grin

OP posts:
ouryve · 03/06/2016 23:37

And yy to suicidal ideation. Thankfully, not had any of that for a few months. He just wishes his brother dead, instead :(

LongChalk · 03/06/2016 23:40

Yes!
-He'll eat when he's hungry. Or, if you only offer him fish and don't pander to his 'beige and no touching rule' he'll soon eat it.
-If you're firm and ignore him, he'll soon calm down.

Msqueen33 · 03/06/2016 23:44

I'm so glad I'm not alone. My dd had genetics tests done and nowt came back. It's just so bloody hard. We're in a very middle class area and I don't know any people who've got kids with additional needs so it's hugely isolating. The parents of nt kids don't have a clue and when they're ranting that their toddler wants to play with them all the time I feel an overwhelming urge to hit them because I'd kill for my youngest to want to interact. Ineloquently put but it's all crappy. Everyone faces different challenges but it's all very crap. I constantly feel guilty that I had my youngest and that should anything happen to us I've left my eldest with two autistic siblings. Being a special needs parent is a lonely place to be because the truth is ugly. The struggle is ugly and I've no one around me who wants to hear about it.

MillyMushroom · 03/06/2016 23:46

Oh yes the wisdom of nt parents: sticker charts, naughty step and 'enforcing boundaries', yeah like we haven't tried (and failed) at them all at various points Hmm

Just5minswithDacre · 04/06/2016 00:01

Sticker charts and naughty step to tackle ASCs?!? God I WISH someone had ever suggested that to me. Putting them slowly through a blender would have been so cathartic.

Thornrose · 04/06/2016 00:04

I hate that my dd is so anxious and overcome by intrusive thoughts that she attacks me.

I hate that anti psychotics make her less aggressive but have other horrible side effects. When dd kicks off they tell me to up the meds. She wouldn't need the meds if her anxiety could be reduced. Why can't that happen?

I hate that my child hurts me and at times wants to kill me. Sad I hate dd's autism I can't think of a single positive right now.

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