Our son was diagnosed with ASD a week before his 3rd birthday...

[Takiwatanga]

AmA

Thanks for the question @mozzie.

My dsis was 13 and I was 9 when db was born. My excitement for him arriving was beyond anything I had ever known!
He was a colicky baby with CMPA. So tough to settle. He didn’t tak much. Liked watching the washing machine, playing with brooms. Would watch the same stuff constantly. 30/40 times a day.
He was very very very violent from an early age. His meltdowns were awful. He would batter us with scooters and it was ‘ok’ because he was 2-3.
Our parents excused every bizarre and violent thing he did. My sister adores him and they get on well. I couldn’t handle it. The meltdowns, the violence, the 24/7 repetition of fucking tv show one liners. The constant lying. The violent sexual behaviour starting at 10?
My parents faults were denying something wasnt right with him.. and then accepting it and stopping our lives to facilitate his. We were constantly abused verbally and physically by him and it was ok! Because he has asd.

Now he’s older I live in a different country and stay away. I can honestly say I hate him. He ruined my childhood. Our lives stopping to facilitate his meltdowns and behaviour stopped my dsis and I having any sense of normalcy. We lost our childhoods the day he started exhibiting behaviours.
Our parents didn’t for a moment think of my dsis and I. I still get plagued with phone calls and I left 10 years ago.
“Your DB is doing XXXXXXX or saying XXXXX or making inappropriate XXXXX at XXXX” the constantness of our lives still being all about him is dire. I refuse to engage.

The expectation that we will take ‘guardianship’ of him is a heavy weight. I have told them I will not provide care. If they cannot care for him, he will need to go into a residential facility.
My advice? Love your child. Help them. But provide respite for your other dc. Their sibling has it hard but they suffer too. Don’t ever expect them to provide care. They didn’t make him, they shouldn’t have to raise and keep him when you no longer can.

Avoid the things my parents did that caused the resentment. If they had considered my dsis and I a bit more I can guarantee you I would feel differently about my DB.

Sadly we all wish he hadn’t been born. For his sake more than anyone’s.

30hours I am a sibling too. My son also has Autism.

My brother was ‘low functioning’ and prone to violent outbursts. I was the youngest and smallest, so violence was always directed at me. I had no privacy. My brother would demand I sat in a certain way and would even come into my bedroom and rearrange the position he wanted me to sleep in! Come into the bathroom and remove the plug while I was in it! If you refused, he would become violent and scream for hours on end. It was hard for us all, including my mum.

I look back now, with no resentment and think it made me who I am today.
Perhaps more empathetic than I would have been, without him.

Sadly the siblings of asd children get a massive booting on mn! Just for existing.. and daring to say it might be a bit tough for us too.

I do remember a thread on this being very emotive, yes. The same as for parenting kids on the spectrum/hating or wishing away autism or being married to aspies etc
Simply put, as there are high-functioning autistics (another argument there, autistics vs person with autism definitions) on MN, many with a later diagnosis...it's never going to end well to hear that some would prefer you had not been born or that you change...all of you ('you just pointed to all of me!')
Derail...that was my favourite quote from training dragons.
Anyway, my point is is that - as you no doubt know - because there are few accommodations for autistics in a neurotypical world, because the spectrum is so wide 'You've only met one child with autism' and because there can sometimes be such a difference between support mechanisms...it can be hard not to see it from all sides/discuss dispassionately.
Even classic autism vs hfa can be hard to discuss as highly functioning can mean the child can 'pass' and the judgements are worse. But my heart goes out to those parenting children who have it ten times harder than I do.
The day to day grind and lack of support for carers - any carers tbh - is something that needs support threads and venting threads/safe spaces to purge frustrations. Imho that is important to stay sane...but otoh I am wholly against disablism and ageism so it is best to set up support threads whereby the purpose is clear and the intention well-meaning otherwise it becomes them and us/a race to the bottom etc when we could all be on the same side iyswim.
I am sure if you set up a support thread for siblings it might take off. The Stately Homes thread (victims of narcissistic parents) has offered hand-holding for years now as an example where a support thread has worked.
I often think about setting up a support for parents thread on here but, as you say, do not wish for it to be a bun fight and I do not have a diagnosis for my child yet.
Sending you hugs 30 and you too, OP.

@claw001 you’re a better person than me. Truly. I wish I could have been more like you.

I do love him. I just wish I was able to have a childhood too.

Thanks for the kind words everyone. I know that because my experiences were quite so bad I come across strongly but it’s never with malice or hatred. I wish you all the best and I’m sure your DC will fair better than we did.

And hugs to you, too, claw
My eldest is very empathetic. Her class had children with SEN from a nursery visit them a few weeks ago and she had five kiddies attach themselves to her because she knew how to deal better than some of her peers. Her form tutor bought her lunch as she managed to sort a melt-down that morning.
On the one hand I was proud of her, on the other hand sad that she even knew how to do that iyswim
Same as the having kids thing - she does not want them as she says she is too selfish/not patient enough/wants to be free to pursue her own ambitions etc That may change in the future but again, I do feel guilty her own experiences/upbringing have led her to that conclusion. Or maybe I have saved her the fate of motherhood, who knows.
30 It sounds horrendous. You have my every sympathy and I thank you as every so often I could do with a kick up the bum to cut DC2 more slack when they complain about their brother.

30 not a better person at all! I totally get the wanting a childhood. You are kind of forced into a tolerant carer role and have to grow up pretty quick.

Memories which by others standards should be terrible, are actual fond ones. Or ones I can laugh about, like having my hair pulled with poo all over his hands! Its kind of like that was brother, that was who he was, if that makes any sense!

Mozzie we are all shaped by our upbringing and experiences, autism or not. Maybe not always for the worse!

I have a son with Autism and I have the patience of a Saint and haven’t lot my humour, thankfully!

Birds destiny - I would always ask for the truth. Just be honest. About the good and bad. I tire of people trying to sugar coat things very quickly, and in the long run it helps no one to make out a child is doing fab all the time when they're not ⚠️simply to save the parents feelings... I know people do this to be kind, but as a parent I feel we need to know the good and the bad and the ugly! :)

I'll give you an example... At ds nursery they always insisted he did well, but wouldn't mention that he refused various things, wouldn't eat snack and didn't get to go out on activity because he was too anxious. I would then realise at a later date or whatever that these things had occurred and they hadn't told me as they didn't want to upset me I'd imagine, point is I want to know, I need to know, it's the only way it'll help ds and I move forward.

"
My eldest is very empathetic. Her class had children with SEN from a nursery visit them a few weeks ago and she had five kiddies attach themselves to her because she knew how to deal better than some of her peers. Her form tutor bought her lunch as she managed to sort a melt-down that morning.
On the one hand I was proud of her, on the other hand sad that she even knew how to do that iyswim"

Yes mozzie, I totally relate to this! On the one hand you're happy your kid is empathetic and compassionate and wise and patient. But then other times I get mad and think, she shouldn't even have to be aware of this stuff yet. Let kids be kids. I am struggling so much at the moment with my dd and her anxieties etc and how to best manage her and her brother so she feels less anxious around him or annoyed or whatever. We have applied for respite and are giving her more 1 on 1 time, plus lots of hugs all day etc and talking. It still hurts my Heart though. My daughter is not her brothers carer and will never be. That is not fair on her and I won't have it.