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.

I think eye contact becomes an issues when for eg teachers punish kids who are known to have autism for not giving eye contact. Have heard of that happening a lot over the years and it’s not acceptable. Punishment should not be happening.

Ds2 (very NT) is terrible at eye contact when he is feeling shy (so eg interviews, meeting new adults etc). I need to have a word with him about it as he is getting to the age where it matters (& he is NT and needs the feedback).

I don't feel that eye contact is a social convention. For me it is like a craving for human touch. It is something I need. I physically ache when my dd won't look at me. It's just something that each cannot really really be comfortable without. There's no happy compromise.

Hanging my middle one used to explode after school (not literally) too and DH (German) used to hide under the kitchen table for an hour after primary school apparently - it is quite stressful for some children.

I wanted to mention that just as shorthand you might get more understanding using the word Aspergers here - I know it's no longer diagnosed in the UK, but many Germans use it and you won't get the "but he's intelligent" comments. Not sure if that's helpful or not but thought I'd just throw the idea out. It will be understood in a stereotyped way and might bring different problems (back to the expectation that he'll be a maths genius ...) But it might help if you want to explain to people (kindergarten teachers, parents of your other children's friends, non specialist medical staff) who aren't getting their heads around him not being "disabled enough" and so assuming that he can't be autistic at all. This article on rather are stereotyped highly intelligent young "high functioning" autistic man shows a German take on Aspergers:

www.sueddeutsche.de/bayern/abiturient-mit-asperger-syndrom-ich-mach-mein-ding-1.1426697-2

Slanety - apologies I need to read back to get a better idea of your dd, but without doing that have you ever tried/come across intensive interaction. It’s all about establishing meaningful connections following the child or adults lead. It’s something you can just drop into the day. There’s a good intensive interaction parents group on Facebook.

Evelyn, I was diagnosed last week, aged 55. The Dr who assessed me also said “you are a person who would have been diagnosed as having Aspergers, a couple of years ago”. That is the term I will use.

That sounds fair enough Suki

I haven't rtft yet, but I could've written your original post. You're not alone in how you feel.

It's not easy, I don't feel blessed, and yes, I know it could be worse, but that doesn't help. I really worry about how my dd will manage out in the real world; she's so naive and trusting, and desperate to be liked, which is dangerous in itself.

I love her, but I often don't like her very much, and our home is often a war zone because of her behaviour.
I also feel guilty as I have it and I blame myself for passing it on.

So, YANBU.

My dd and I have Aspergers, so people think we must be clever, but it's still ASD and life is still hard. I often wish we were normal and had friends like NT people do.

Well that was a long meeting which resulted in the usual more forms to fill, more boxes to tick, more referrals to try, no actions yet. Feel completely worn down by it. I was 45mins late for the meeting because DS couldn't cope with the idea of putting his shoes on to go to my friends house. He screamed and pushed and rocked and repeated the same words over and over again. I don't actually feel like I have the engery to keep going. I sat in my car after the meeting and had to force myself to go and pick the children up. Since picking them up with have had numerous issues with being cold, being hungry, wanting food, not wanting food, needing me, not wanting me. I can't remember the last time I sat down and didn't feel anxious and worried.

@Andro not physically dangerous, very dangerous mentally.
Why should we fit in with what society expects when we do no harm?

@HangingRoundInABofAlorsStance that's such a shame. Particularly as there were small accommodations that could have been made that would have been a world of difference

@EnglishRose1320

@Nikephorus I find it rude too

Why should we fit in with what society expects when we do no harm?

At no point have I ever said you should! You expressed a lack of understanding as to why eye contact in the NT world seemed so important, I attempted to give you an explanation - I'm sorry if my intention has been misunderstood.

Bishop inclusion in Germany is about 20 years behind the UK. On the plus side the special schools are often better than the regular schools... My dc3's best friend goes to a special school for a speech problem that wouldn't even have justified any support in mainstream in the UK. It seemed extreme when it was confirmed he wouldn't get a place at the state primary but would go to the specific speech and language school in the nearest large town - but his mum and he are both thrilled with the school which has better ratios than any fee paying prep and tons of on site speech therapy and other support.

I know it's not autism related - but mainstream in Germany has such high children to adult ratios and such an emphasis on self reliance and self motivation, self regulation etc for children that most mainstream kindergartens and schools are years away from being able to cope with any special needs at all.

Englishrose

Ok @Andro sorry - comprehension can be an issue in text too

EnglishRose. You’ve done amazingly today. It’s so, so hard. We’re all here and know exactly what you’re going through. I remember, sitting on the kitchen floor crying after my DH left. He’d met someone else and said he’d never forgive me for getting our 4yr old son “labelled” with an autism diagnosis.

And then this little boy, who was supposed to be non-empathic and who was in his own little world, brought me a box of tissues. At which point, I got up, blew my nose and phoned my Mum. There was nothing she could do or say really but it felt good to tell her.

And we’ve carried on, cause we had to. And so will you, love.

evelyn thank you for that post - I thought it was just me. My eldest goes to Gymnasium but will always have a vocab deficit as DH and I are not native speakers. There are no TAs, SENCOs (sozial padogogin aside) and in her year in primary, the children with an SPD/dyslexia got 20 mins more on tests, that was it. A friend whose child was on ritalin got some slack but got moved down to Realschule as soon as the Bavarian curriculum proved too much. I may have to move back to the UK but cannot atm.
Bish probably sounds a stupid question but what further accommodations would you have suggested? Sometimes I think I am too close to it and miss the obvious. I did tell them to give him time warnings, I provided a laminated safe space card - the tent was my idea because he kept hiding in the toilet, gym or cloakroom and they would let him fall asleep there - I also gave them a holepunch reward card but they didnt use it. They gave me back the spinner I thought he could use while waiting when not eating. Communal breakfast was obligatory - you can guess how that went down - so the compromise ended up with him not having to eat rather than me being allowed to give him something to bring. No flexibility wrt mealtimes, nap times or trips - he was expected to comply or be quiet whilst not complying. What could I have asked them to do, so I know for next time if there's a next time

english huge hugs from me. Am sorry you're going through the mill. [tea] - my answer to everything which probably explains my weight gain x

Thanks for all the kind replies, yes Hanginground I definitely use cake as a coping method as well!
Ds1 is completely refusing food and building up to a meltdown. Ds2 is fed up of not getting enough attention so is mimicking some elements of Ds1's behaviour whilst I try and get him to bed. Oh just wants to know when the house will be calm enough for him to do a workout.

We have just eaten jelly, crisps and ice cream. Fuck it. Tomorrow is a new day. DS is toilet trained but has been weeing and pooing on the floor this week because ''he forgot that he wasn't a baby anymore''
Tell your other half wrangling the kids IS a workout

Immediate things I can think of (and I'm not your son so might not work) is the sand timer down to the gong - it doesn't help not knowing when it's going to happen if that makes sense? If he has the timer and knows when the gong will go he can mentally ready himself for the change to happen.

The tent is a good idea BUT if the reason he used to disappear is down to noise and crowd a pair of ear defenders will help too.

Communal eating is just never going to work. Too much pressure. No suggestions there, unless a corner could be provided where he could be in the room but alone at his own desk with or without ear defenders?

Ds has eaten a slice of toast tonight for his tea.

His constipation is awful even though he is on Max meds for it st the moment so going to have to consult his consultant but when he eats so little it’s hardly surprising.

Sleep is out the window.

And it’s all a vicious circle of everything making everything else worse