Does anyone else with a child with ASD feel like this?

[TheLadyhasarrived]

DS is 10, diagnosed with ASD last year.

Some days it’s just there in the background and it’s fine.

Other days I hate it and it feels unfair and heartbreaking that he has to deal with it and struggle.

I wish I didn’t have days when I hate it.
I love DS, he’s amazing.
But it is hard, maybe just now because it’s school report and parents night time.

You see, it isn’t even quite as cut and dried as that for us, spock

It’s difficult to place a finger on exactly where it all started to go wrong. And it isn’t even about other people - of course it is, but they aren’t being disabilitist or unkind when they have a perfectly normal and natural reaction to someone gobbling food like a hog that’s been starved for a month or ranting on in what seems to be crazy rage (though it isn’t) about something harmless.

People can only adapt so much.

I don’t want to change DS. He is utterly perfect to me. It just breaks my heart that things are hard for him and I won’t be able to protect him from it forever. That’s true for all kids I think, but more so for him. I want the world to change for him.

Not particularly for me.
DS is 17.
I would change the exam system so kids like him who freeze with anxiety don't have their lives made harder and their intellectual capacity underestimated because they don't have the exam grades their ability merits.
I would change the university system so that kids who have lots to offer in some fields aren't disadvantaged because it takes them far longer to do the work and takes far more out of them and their challenges with social communication means they don't have it in them to add in voluntary work.
I'd change job interviews so the role goes to the person who can do the work best, not the person who can most eloquently describe why they want to do the work.

I wouldn't change my son. He is entirely valid, he is worthwhile. The difficulties he experiences come from the world around him and his failure to manage neurotypical expectations.

Am I sad he says he doesn't want to marry or have kids? No, because he says he doesn't want to. If I was sad about that it'd be for myself not for him. If my son's dreams include a quiet space, a job that allows him to earn money doing something he likes, and the ability to come home, not be bothered by anyone, get some peace and quiet and play computer games, how is that a sad life? It's what he wants. He deserves to be happy, and that doesn't include being the lead role in the school play or being head boy or becoming a doctor.

I'd never take away my son's autism and nor would he. It's part of who he is and part of who I am.

I'd love to take away the challenges he faces at times though. It's an NT world and hard for autistic people at times including me.

As a woman of 50 though I have good awareness of what makes life hard. My son is still getting to grips with it all.

My son was diagnosed with Aspergers at 5. School was absolute hell. He was bullied relentlessly and became suicidal. He moved to a special needs school at 14 because of it. He then became happier but didn’t get any qualifications because they weren’t offered at that school. At 19 he was unemployed and sitting at home on his computer all the time. To the outside world, he didn’t have a future.

But then things changed. He made friends through online gaming. They invited him to meet up. He was wary, he’d been burnt many times when trying to make friends. But he decided to go for it. Now he has a good circle of friends and they travel all over the UK and beyond for gaming events. As he gained confidence he decided to try college. He’s always loved Japanese stuff, anime, music etc. He did an access course, got a distinction and went to Uni to study Japanese. He graduated last year and is starting a job in Japan soon.

He hasn’t had a relationship, he says he doesn’t want one at the moment. That’s ok. It’s his choice and he’s happy with it. Therefore so am I. He is “different” but I could not love him more or be more proud of him. Given the choice, no I wouldn’t change him because I love who he is. He says to me he wishes he could go back and tell his younger self not to be sad. That what happens at school isn’t the end of the world, although it feels that way at the time. He absolutely loves life now. That is all I ever wanted for my children, for them to be happy. He also feels that the struggles he has been through have made him the person he is now.

All I would say to anyone as a parent is don’t give up. Don’t underestimate how much your love and support can help your kids. They can find happiness.

to you all esp floating

yerauntfanny
There isn't anywhere where the autism ends and your ds begins. Your ds doesn't "have" autism. It isn't something you could scrape off and reveal a shiny NT person hiding inside. If you are autistic it is who you are, not something you have. There is no non- autistic boy hidden inside my son. My son IS the autistic boy. It permeates the way he perceives everything and the way he understands everything. It isn't something you switch on and off; it isn't a case of "this bit of behaviour is ds being autistic, whereas earlier he had a neurotypical half hour". It doesn't work like that.

Understanding that and accepting that has added greatly to mine and ds' acceptance of who he is and that who he is - a brilliant oddball who has an amazing memory, who hates hugs, who rescues caterpillars off the path, who watches ants, who writes code for fun, who likes to be alone, who makes you feel so privileged when he lets you in - that's alright. He's alright. It's the world that is wonky.

If I could take away all the uncertainty and pain my dd has already experienced in her short few years I would. Nature is very unfair at times.

AltogetherAndrews, your comment resonated so much with me. A couple of years ago I went to DS2's nativity play. He hates dressing up so it was always going to be difficult but on the day he flat out refused to take part at all. Everyone else got to watch their children smiling and singing and looking adorable in their costumes. He sat in his seat at the front of the audience and rocked. It was so stark and upsetting as we were still pre diagnosis then and his difficulties were becoming more obvious.

I know that floating, it's hard for me to describe and maybe it's just because up until a month ago we were told time after time that DS would grow out of his behaviours and now all of a sudden we're being told that actually this is your DS and these behaviours won't go away.

The sad fact is and I've said it time and time again, our family struggles to cope with his aggression and my DD in particular is a nervous wreck because of it. We're constantly on egg shells waiting to see which side of DS we will get today, is it the aspiring car journo who can tell you everything about any car you want, is it the manically depressed one who is going to beg us to allow him to die or is it the one that needs to be physically restrained to stop him attacking me/DH/his sister?!

This is what I'm referring to I suppose, it's almost like there are 3 different DS'. None of them are ever happy, he is constantly on edge and in a very dark, lonely place

Sorry, went off on one again.

Having a group of people who (sort of) get what I mean has clearly brought all this to the surface and hit home!

Basically what I meant was, if I could take all of those feelings away for him i absolutely would without a shadow of a doubt.