What is the hardest to cope with with your ASD child's behaviour?

[Cookingwine]

Just curious really, having an ASD child, (undiagnosed until she was 10) I find it extremely hard but cannot really pinpoint what is so hard. It is frustrating trying to explain to family and friends that every little thing is difficult, like getting dressed, washed, going anywhere, everything is a battle, that can result in her losing the plot and me shouting to get her to JUST DO IT. And that she can be so anxious and stressed with NORMAL things, that she cannot keep friends as she is demanding exclusivity and gets too intense.

[bialystockandbloom]

For me, atm it's coping with the changing but almost constant obsessions about one thing or another, which results in repetitive conversation all the time where the same question is asked 30 times a day. Some of the other repetitive conversation is pretty bloody exhausting too.

The anxieties (prob goes hand-in-hand with the obsessive behaviours), at the moment it's absolute paranoia that someone (usually dd) is going to be sick. Car journeys are a nightmare as he stresses the whole time that she's going be carsick.

Having to ask 20 times about e.g. getting socks on etc, before I get a response.

But none of these things that are hard or annoying for me to live with compare, I think, to how difficult his life is for him, how much he sometimes says he hates himself, and how much effort he has to put in every single day to participate in mainstream life, make and keep friends, try and understand and make sense of the social world

(Btw I think I understood what you meant by 'giving up' - I read it as giving up battling trying to make a square peg fit a round hole)

[bialystockandbloom]

phil same here

cooking I think at some point I realised that it wasn't a choice between a lifelong battle vs totally 'giving up'. It's more that you start to understand how your child learns best, and then start parenting according to the approach that best fits your child and your family. So it could be making compromises about some things (e.g. hair washing) but concentrating on one or two other key issues (e.g. leaving house).

For us, from when ds was very little at 3yo we used an approach which worked on teaching skills that were lacking (at that point, fundamental things like interacting with other people, or basic functional conversation), through finding out what motivated him, and reinforcing that constantly.

Fair enough that you're finding it hard atm. You've had 10 years with no diagnosis for her, so probably hard for any of you to understand why this was happening, and how to help. The good thing is now she has been diagnosed at least you know that it is not just down to 'difficult' behaviour. (That doesn't mean 'giving up' trying to help and teach her - just that you now understand what you're dealing with, so which approaches might work better or not.) Small steps

[ouryve]

The two of them locking horns - DS2 being a goadyfucker and DS1 utterly intolerant of him even when he isn't goading.

[Cookingwine]

FS, where am I suppose to vent? I find this whole F** ASD shit and hard, the future for DD looks bleak, we are held in hostage inside our house or she will literally explode with rage because she is asked to dress up and wash. I am sorry if this makes me sound like a twat. I don't think I am a twat, I think I am trying bloody hard to cope with ridiculous situations, that most people won't go anywhere to try to understand. DD is extremely brave and resilient, she tries very hard to fit and comply, she is getting very confused and sad at the moment because she doesn't understand her friends, her anxiety is sky rocketing, and it is heart breaking to see. I still think she should wash her hair though. And give us a break in the mornings.

[PhilPhilConnors]

Cooking, it is hard, and it doesn't take time to get your head round it all.
There are strategies that can make life easier, for ds2 this is reducing demands, using lists (easier to comply with that me nagging him) for everyday things like inhalers and tooth brushing, and there's a brilliant book called The Explosive Child.

[PhilPhilConnors]

Does take time, not doesn't, sorry.

[soapboxqueen]

Funny thing you should mention the hair. Many children on the spectrum don't like personal grooming for many reasons. However, I was fortunate to hear Dean Beadle speak (seriously funniest person ever) taking about growing up with autism. He mentioned showering etc and he said that personal hygiene had a lot to do with wanting to be social etc because nobody wants to be the smelly person with no friends. He didn't like social interactions so why would he do something to encourage those interactions?

Any Road, I wouldn't bother with the hair washing if it's causing so much angst.

[Ineedmorepatience]

I admire actually those who have embraced this whole ASD thing


I am sorry but I actually think this does make you sound like a twat!
We dont do flaming on this board but that!

Having Asd is part of who your daughter is, its part of who my daughter is and very likely part of who I am! You dont get to chose whether you embrace it or not, you just fuckin love your child and work your ass off to make their life as pleasant and as functional as you can!

[PhilPhilConnors]

The girl with the curly hair on Facebook is very good too.

[Cookingwine]

good bye

[bialystockandbloom]

Vent away

Using lists/rules works for us too, but then it is my 8yo ds who has ASD, not a 10yo girl - might not work so well!

I think the social complexities at 10/11yo are hard enough for most girls to cope with, so can see why it's especially hard for her atm. Probably some early teen hormones starting to emerge too.

Being really matter of fact and breezy often works well with ds when he's refusing/anxious - kind of normalises whatever thing it is that he's kicking off against, takes the pressure off, but also he knows that at the end of the day, it is non-negotiable iyswim. But again, can see that it might not work so well with your dd. Or maybe saying she can have her mine craft once she's washed/brushed her hair/whatever it is.

[bialystockandbloom]

Oh dear, cross-posts there!

[bialystockandbloom]

OP don't go.

I know I for one haven't 'embraced' ds's ASD - I've accepted now that he has it, it is part of him, but it's taken me five years to get there. And I don't think deep down I'll ever actually not wish he didn't have it. It's totally normal. We're not saints. Just trying to make the best of things, help how we can. But frustration/sadness etc is part of the package, imo, and I don't think it makes me a shit person that I sometimes feel that.

[Lesley25]

Op it's early days for you. Please don't go. Let's all try and be a bit kinder. Those early days are tough, dont feel you have to say the right thing in the right way, It's ok to be consumed by it all. X

[Stradbroke]

Cooking - I am sorry that you have left the thread and I hope you are still reading. It sounds like you are finding things hard and that you are struggling with the 'everyday' being difficult. That is understandable.

I think maybe some of your posts have come over as quite angry with your daughter and like you wish she were different (and maybe today you do).

It has taken me many years to get to the point of accepting my day to day life and not wishing things were different. There are still days where I cry and get frustrated and wish that things were easier. But for the most part I have accepted my daughter for who she is and our family life for what it is.

The way I feel has a huge impact on how I am with my daughter and therefore how she functions.

I have had counselling and worked very hard to get where I am.

Do I embrace it? No, not really.
Do I now accept it? Absolutely.

But back to your question. What aspects do I find hardest? My daughters need to control when she gets anxious and the negative impact that has on the rest of us. The unpredictability of what mood she will be in and the fact that this can then determine the mood of the rest of us.

[Cookingwine]

I am sorry I reacted like that, and thank you to EVERYONE on this post, even those who made me boiling, as I realise that yes I am really angry with DD, with myself for being angry, and somehow I think I am progressing on the grieving path, now I am just plainly sad which is embarrassing as I am still at work. DD is amazing, she really is, I love her to bits, and I wish she could have an easier life.

[DN4GeekinDerby]

I have ASD as does my eldest [at least, diagnosis circles of hell here means I stopped and didn't bother with the others]. We home educated from the start so I can't help with that but to answer your first question - the worst is when we sensory clash - he is auditory seeking, stims with sounds and noise, and I am auditory avoidant most of the time so it's been a long road of compromise and trying out new stims and such. It took ages for him to understand that the noise he makes that makes him so happy and feel so safe for him can make other people feel unsafe and unhappy.

From your posts, I am going to recommend neurowonderful and aspergerexperts via youtube and their websites which have a lot of information from the ASD point of view which can take down the first step of understanding and working through a lot of the emotions and clashes you seem to be having. Even as an ASD adult, these two places really helped me to explain things to myself as well as to other people and as well to my eldest who doesn't like any diagnosis [unlike myself, my ASD diagnosis was a relief] but likes how they talk about how they cope with things and aspergerexpert's book recommendations really pleased him.

[Melawati]

cooking I think I understand where you're at. My DD was dx at just turned 12, about 9 months after the possibility of ASD was first mentioned by anyone.
I found it very, very hard to get my head around, and to make that mental shift from viewing her behavior as something she was choosing to do that made all our lives difficult, to seeing it as something she's not really in control of. I still lose it and shout, especially when we're all trying to get out the door. It's particularly hard if you have other (younger) DC who also need care and attention at busy times.
There's so little support for the late diagnosed, no early bird or similar courses to help understand behavior. I do think this just adds to the difficulties, you're really on your own.
What has helped us is getting in touch with our local NAS, which has helped us meet more girls with ASD, and helped me with support. It's tempting to see fitting in to the mainstream as goal to aim for (or a place to get back to for girls who were masking and seemed 'fine' when younger), but allowing our girls to be themselves lowers stress and ultimately makes life easier (but different).
We have found the girl with the curly hair useful for explaining things to others, there are a couple of good comic books dealing with issues that come up at school.
I love my DD, but I do wish that our lives weren't dominated by ASD. So in that sense I don't/can't 'embrace' it, but know I have to learn to live with it.

[shazzarooney99]

Constantly feel like we are walking on eggshells. The violence, the threatening to kill himself.

[Cookingwine]

ASD support group seems the way forward MELAWATI. I hope she will find one that she likes. she is in the bath, about to wash her hair and I only had to mention it once :) I think she decided all along that she would do it the last day before school restarted. Hard to see where the stubbornness stops and where the ASD starts. And what about barking rudely at her youngest sister? That's another thing that makes me react impulsively. And do I have ASD myself? CONFUSED and EXHAUSTED, certainly. ASD? cannot decide.