Friends Son has ASD he is a twin.

[Charliechange]

I really would like some advice.
How do I support my friend properly. Do I bite my tongue or do I express my opinion.
The son with ASD has only recently been given this diagnosis (not sure if that is the right phrase?)
Mum isn't coping very well with it, however, my main concern is for the twin brother. He is having to grow up very quickly, being guided to adapt the behaviour of a normal 4 year old so that he doesn't trigger reactions from his brother.
He is learning that he is a naughty boy but actually he is just playing with toys in the way 4 year olds normally do it. Sadly that makes his brother very angry, trains have to be played with in a particular way, carriages in a certain order etc.

He got told off when we were there last week and I did mention to my friend that he had done nothing wrong, and the mum's response was "but he knows doing that winds )(*&^ up"

I know she is going through an amazing learning curve, and as a family they are going through a difficult time, I just don't know how to support her / them.

Help!!! I want to do the right thing.

bump = anyone

I'd keep well and truly out. Did he know it would wind his brother up? Quite possibly- my younger 2 know what annoys ds1.

There's not much the mum can do if trains have to be played with in a certain way. That's not going to be fixable overnight, if it is fixable at all (and anyway something else will replace it- it's just autism). Certain doors have to be shut in our house. DS3 opens then to wind ds1 up- and then eventaully gets attacked - usually after ds1 has bitten his own hand and headbutted various walls - ds3 - knows this - so ds3 gets told not to. If he repeatedly opens the doors then he gets told off (and he may be 3 but he knows exactly what he's doing).

DS1 is expected not to go for his brothers- sometimes he does it because he doesn't understand, sometimes he does it because he thinks it's funny, sometimes because he's cross. Likewise his brothers are expected to not do stuff on purpose that's going to lead to ds1 headbutting the wall.

I;d support by listening but not offering advice when you know nothing about autism. Sorry that's blunt- but there's nothing worse than people thinking it's something the child has some sort of control over.

She should perhaps try getting 2 train sets and teach the children they can each do what they want to their own. That might work (might not).

He doesn't have to learn that he's a naughty boy, but he will have to learn about autism. DS3 (aged only just 3) has a basic understanding. He knows that ds1 'doesn't understand'- actually he told my Mum off when she told ds1 off for stealing sugar last week "he doesn't understand granny he's autistic, don't tell him off' (Mum told ds3 autistic or not ds1 would still be told off for stealing sugar).

[http://aut2bsafe.squarespace.com/journal/2007/4/29/books-for-siblings.html I've reviewed a few books for siblings here]]

try the link again- siblings books

thanks yurt - be as blunt as you feel necessary - takes alot to offend me.

It is so hard because they have only been getting advice and support for 6 months and they are still in turmoil about it all.. My friend is really hoping for a quick fix and desperately trying things that will take it all away.

I do sit and listen, there have been alot of tears. I am sure longer term there will be a greater understanding of what ASD means (for the family as well as the rest of us)

It just felt the other day that alot of the frustrations she was feeling about one child were being put onto the other child, I just wanted her to give him a break.

Will listen as quietly as I can from here on - you are right I really don't know anything about it which is why I wanted advice.

Thanks again.. do you think that if I point her in this direction that there are other Mums around MN that could offer her some more knowledgable support?

Could you take that twin to play so he has time to interact in more level situations??

I think its difficult my DS1 has autism but high functioning after 2 years of getting him a diagnosis we still have no help or any understanding other then what I have gleaned in conversations on here

DS1 is easily wound up thankfully very gentle but he will bounce his head of things or make loud wailing noises when it all gets too much and ds2 who's 4 knows this and winds him up no end

I think they have to learn to cope on the situations that they are living in other wise ones needs will always override the other

Hard one its difficult I know that when people say things to me about ds1 behaviour it really upsets me as there is nothing I can do about it and they want him to play nicely with their children who annoy him immensley and won't listen when I tell them he cant cope with that much stimulation

You could have been talking about me there charliechange lol

I am mu to 6 yrs old and 4 yr old twins, DT1 has been investigated for the past 2 yrs for ASD.

I know that at time I shout etc at my other 2 boys for exactly the same as you have described- I don't mean to at times and also say" he knows it winds up

I think the best thing you can do is to offer to take either twin off for a while so both get their own time with M&D, and the NT twin gets time out- depending on what you feel you can cope with.

That's what we do really- we engineer situations so that ds2 and ds3 get some time away from autism.

Do remember though that it is the NT twin's normality to have a brother who freaks at whatever. So they're not going to be as shocked as a visitor. I've noticed that when people (e.g. at ds2 and ds3's school) meet ds1 they can be concerned about the effect on them. But they don't realise (yet) how they miss out, and ds1 headbutting the wall because someone's turned off the landing light doesn't bother them at all (ds2 who can reach for example will just go and turn the light on, whereas ds3 will tell me why ds1 is shouting often). Whilst people seeing ds1 carrying on for the first time can be shocked, ds2 in the same room at the same time won't even look up from his Nintendo.

I do think separate time apart is essential (probably more so for twins), but if that's in place providing the child isn't being physically attacked then it's all workable (although can be exceedingly stressful moment to moment as jambuttie describes).

Have to echo other posts.
It is unfortunate that siblings have to cope with ASD but the truth is that they do.
My DS2 has an elder sibling who got his head around how to be around his brother quite quickly and DD is only 5 but understand her big brother quite well.
Funnily enough we were laughing about this this am. DD has chicken pox and is off school but we had to nip to the shops ( no she is not contagious) and i picked up Stardust for her as it is only £8 in Sansburys in spite of being released today. Anyway as we walked home I said to her " now you do know about having a DVD don't you?" To which she relpied quite cheerily " oh yes - as soon a x comes home he will nick it !".
We both laughed and she was quite proud of herself for understanding that that will happen and just coping with it. I think I have always tried to make the other two feel proud of how they help DS2 rather than encouraging them to feel as though they are sacrificing things because of him.
I can't agree with yurt etc more - the time when sibs can just be themselves is the most important thing. So taking twin out would be fab. And i also personally feel that allowing siblings to talk freely and express their frustration etc helps.
I have different things and times and treats where each of the kids have pone to one with me and with DH. They do understand that they have to cope with their siblings too but reinforcing that they are allowed to be themselves counts too.

yes agree pagwatch, and how clever of your dd!

ds3 knows that he's not allowed to watch cbeebies when ds1 is home- he can try but won't hear anything as ds1 will stand screaming in the room trying to tun it off. (Weirdly for the previous four years the only TV channel allowed on was cbeebies. Changed overnight.) Anyway I just turn cbeebies into a special 'hey ds3 it's just you and me in the house, shall we snuggle up and watch cbeebies' time rather than overplaying the 'no you can't' side of things.

Yes we do the same. DS1 knows that DS2 commandeers the TV most of the time, so we engineer special situations when he can watch - staying up after DS2 had gone to bed to watch Ratatouille with Mum and Dad and a Chinese takeaway was a popular one recently!

I do think it's important that the sibling learns to accommodate and compromise, but I also feel it's important that he/she is allowed to express the frustrations of having an autistic brother/sister. DS1 doesn't do it often, but when he does I try to 'reflect back' what he's feeling rather than explaining it in terms of DS2's autism. If that makes sense.