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 haven't RTFT but i did read the first page, OP i have high functioning autism/aspergers and tried to go see X-Men with DP but didn't manage well. I also freaked out about the end of the world and if someone touched my chips i'd have a melt down.... I just wanted to say i would have loved a mother like you that cared so much! My meltdowns were punished like tantrums would be (or worse) and because i was a girl (and clever) no-one thought i could really be on the spectrum, one day your DD will be so proud of you

(I didn't not RTFT out of laziness by the way it was just too hard to read being on the other end)

Oh this thread has been so cathartic for me. Long Chalk yes unfortunately these parents do exist where I live. Luckily DD is a serious dancer & the competitive parenting in the dance world has hardened me! Yes also to the "starve him he'll eat when he's hungry" advice.. (this was given by a paediatrician).. No he won't & 7 years later he still won't eat solid food! The special needs school that DS managed for 4 weeks also thought thought that a reward chart was an excellent idea, but didn't explain to him that they took away stickers for bad behaviour & were surprised at the resulting meltdown! MsQueen my situation is very similar to yours. I feel shit that my NT will always have to be responsible for their brother & I say that as a sister of a brother with special needs. As much as I love my brother I feel incredibly guilty that I've put my own children in the same situation with their sibling.

She wouldn't need the meds if her anxiety could be reduced. Why can't that happen

Have your read anything on anxiety and the Amygdala?

Coincidently this has just popped up on my fb feed. Some nice stories to help counteract any of the judgemental bosom hoickers out there. I loved the last one in particular.

www.theguardian.com/tmi/2016/may/24/autism-heroes-guardian-readers-send-in-their-stories

Foofoobum i get your point of view. My mother was the same - though she maintains that it's me, and my deliberate "difficulty" and "nastiness", that she hates. There's apparently nothing wrong with me other than that I'm spoilt, weird, unpleasant and selfish - and a complete embarrassment to her and my father, and my sister and her family. None of them has anything good to say about me and will tell anyone who will listen what a complete waste of space I am. Sadly even my 7yo niece has now been trained to not want anything to do with me "because I'm weird".

What is sad in all this is

(1) both my parents are clearly also autistic and my sister has a few traits, though not the full set

(2) it has totally negatively defined my family's terrible relationship with me - comparing me negatively to normal people is all they ever focus on - and yet most people I've met in life would think I was just a bit quiet and not very social.

I find the cinema particularly upsetting with dd for some reason.

I think it's because we go looking forward to a nice family outing and then DH and I are enjoying film and DD kicks off and we end up leaving.,every time we hope it will be different and it isn't.

Always feel poleaxed and upset afterwards.

I also hate the difficulties autism causes DD and us.

But I can see why some people with autism would feel upset by a thread about hating autism too.

Magnificat that is awful. I don't throw around going no contact with family lightly but in your case I'd consider it.

I feel this may be the place where I can have a mild moan about threads where people say they are literally crying because their kids have started pronouncing things properly... when my poor child will never be able to speak.

Or "it's so sad when they become independent and leave home..worst thing ever" OK let's swap

However..on a cheery note..my DD suddenly stopped and gave me a big hug yesterday. This is about a once a year occasion, so is super special.

Fanjo, and Thornrose and every other fucker on this thread who knows.

I give you all the flowers.

There's not much fun involved in being a parent of a child who is other, it's utterly heartbreaking. I think I read something once that said, 'It's the children who need it most that attract it least'

I love that little girl all the more for her rejection.

Hi - hope I can get some advice. Our 5 year old has recently been diagnosed with high functioning autism. Reading some of your posts I feel I have no right to join your conversation as my son is able to handle the world (or should it be the world can work with him) pretty well - we can go to regular cinema showings, kids parties, crowded places etc. His Autism shows up in random ways - he can make eye contact but prefers not to as it hurts his eyes, he can tolerate being touched but again prefers not to and really only myself, DH and siblings really allowed. Sometimes certain noise upsets him and he can interact with children but only to a certain extent (they can watch him play for example) before he will wander off. He tends to make certain noises when upset or overexcited (usually a siren noise). We don't live in the UK and from it being raised by his school and my parents to now being in weekly therapy took just 6 weeks which I was amazed at.
I guess I am wondering if it will get worse or does getting older help at all? Is there something else we should be doing? (As well as therapy he also has additional small or 1-1 classes at school) someone suggested having his diet analysed and gave him tested for allergies/intolerances - would that be useful?
I think I'm lucky my son is as he is - I see from the kids at his therapy centre he could have much more challenges - I worry about him getting older and the world becoming less tolerant and him getting lost in it.

I hate that my son is self harming in pain but cannot tell me that he is in pain. I hate it that others will not accept he is in pain because he cannot tell them. I hate that my son is happily enjoying himself somewhere and one child walks in and he is instantly anxious and all the joy has gone. I hate how other people think that he doesn't matter.

Honking do you think your son as toothache or something or do you mean the pain of frustration for eg?

Spanishlady I've no experience of HFA but I did want to acknowledge your post and say Hello.

There's no way for your DD to know whether she will be OK with the noise. Could she take a pair of ear defenders with her in future??

Notonyour- Mainly medical related pain. Some of which has been treatable but he had been left in large amounts of pain for months because some hcps refused to believe us. It only got sorted when we threatened legal action. He does self harm out of frustration as well but the extreme stuff only occurs when he has medical pain and has stopped instantly with the correct treatment.

Hugs to each and every one of you. I also bloody hate nt parenting tips. 'Just walk away when they're having a tantrum'. It's not a tantrum it's a meltdown. I've had people discuss my child from where they've seen her briefly on the school run and remarked on her to another parent. Thankfully the parent she talked to was a friend and said she had asd. I'd genuinely like the nt issues. 'My daughter won't stop talking' such a shame but I wish mine would talk. Some days I have utter rage at what life has become. The screaming, the anger, the fear. It's worn me down. I'm not the same person as I was five years ago. I'm permanently stressed and on edge. I don't go out socially as I feel so emotionally and physically shattered and that I don't know how to relate to mainstream parents as my life is so very very different. If anyone would like to chat it'd be nice to hear from you.

@ Msqueen

I'm not on the autism board very often as I find it makes me wallow but it's an excellent place for comfort and strength. To rant and know that others understand.

I love my dd with every fibre of my body I want to pick her up and hide her away from the outside world because I can't even imagine how bloody tough life is going to be for her and she is high functioning.

But I would like some advice on:

• always being accused of her being my 'favourite'

• why is it one rule for one and another for every one else

• I always take her side - no I bloody don't! I know what she can be like

• why does she always have to sit in the front?!

My dd and ds hate that she appears to 'get her own way' constantly. I don't know how to get past them feeling that way.

Ex-dp doesn't bloody help. Apparently I just never set 'boundaries' she never speaks to him like it. No she doesn't but when she gets home from his she explodes. Without fail, every single time. How many doctors have to say the same thing before he will believe and aibu to now leave him out the process?

Haddock, I'm sorry it's so hard for your son, and for you also.

I used to be very worried that my son would end up very ill one day if he couldn't express he was in pain, and all the more so because so many of our children have such a high pain threshold. But thankfully he's able to say he's hurting, but more than that we can pick up on the signs and ask if he needs Panadol. If he says yes we know something is wrong but we don't have much of clue as to what's wrong as he can't articulate that very well apart from if he has a cold.

I was just talking to one of his psychs the other day based on the back of a chance conversation about Concussion Syndrome I'd had with someone else. He said to me why are you worried about that and I said because the way he harms himself I think it's very likely in the future he could end up with it. That then led to how our loved ones, anyone with a disability in fact, can be marginalized from proper medical care and unless they have people fighting their corner they can end up being very ill long before anything is picked up. I mentioned that the carers, one of thems a nurse, checks my sons scrotum for lumps because at his age testicular cancer is something young men are told to be aware of. The look on the Drs face said it all and he then said - this has been quite a chat I won't forget. Sometimes I think they just don't realise things in their entirety.

We use a mix of the NHS and private care where we live and twice a year I have my son gone over from head to toe but funny enough it was just a feeling I had about him a few weeks ago that made me check his blood sugar when I was checking mine, and yes, he's pre diabetic due to his medication. You just don't need eyes in the back of you're head Eh 😂

I'm hoping your son has better days soon

Msqueen if I can help you in anyway I'd be happy to.

I am autistic (diagnosed, not self-diagnosed, but at moaning about self-diagnosis - like there are tonnes of resources for autistic adults!) and my eldest has possible pdd (not diagnosed) and i utterly understand why you would hate it. (Ds is an angel when not at home, so i dont know how we could even think about getting a diagnosis)

I tried to tell him to go to bed last week, he picked up a plastic knife and tried to stab me. I can hate the urge in him to do that without hating my own 'quirks'. Hating the situation does not mean hating everyone who has autism/is autistic

Beyond I'm so glad you get the thread. I posted last night when I was a bit pissed! I regretted saying I hated autism when I read it this morning.

"The "if you hate autism, then you hate us" argument is just bewildering, frankly."
Possibly this is because you don't view the world the same way an autistic person does. Which is perfectly reasonable, I'm sometimes equally bewildered by the way NT people see things. To me (and I speak for nobody else), hearing/reading somebody say that they hate autism and want to take it away is as jarring as hearing somebody say that they think the answer to ending racism is for black people to have a different skin colour. It might be technically true, but it's the wrong way 'round.

My daughter has no obvious autistic traits (although she has ADHD, so not NT); she did not have a 'normal' childhood, and I found parenting more than usually draining. Many of the activities pps have listed here that their children can't do, mine didn't do either. Not because she couldn't, or didn't want to, but because I couldn't. It must be heartbreaking to want to cuddle your child when they won't let you, but it's also not easy to want to cuddle your child but having to force yourself to actually do it. Or, much worse, to have to turf a toddler off your lap again because you just can't cope with being touched without warning.
On the plus side, in some ways I think I found her ADHD easier to deal with than a NT parent might have. A lot of the coping mechanisms I use to avoid sensory overload also work for her.