How do you tell your child they have AS?

[cornwallia]

I've been going back and forth about whether to tell DS he has AS. He was dx last year and now has a statement. He is 8.

Last year it didn't seem so much of a dilemma as he was oblivious to appointments and didn't seem to have any self-consciousness but he is growing up, becoming self-aware and very conscious of difference.

In fact, he has found additional help at school difficult as it puts him under a spotlight where he has managed getting by without talking to adults very much for the last three years.

Today, on the way back from the beach, stressed in the car, he lashed out at his 5 year old brother, hitting him on the head several times with a heavy plastic gun. He was distraught afterwards and always gets upset after anger outbursts as he feels he can't control himself.

When we got home, I really felt I should start to try and tell him about AS so he can understand himself. He knows about his hypermobility and his sensory processing problems already.

Do you think it is the right time? He has lots of programmes starting on his statement and I think it will be confusing if he doesn't know about why. But does giving it a label help?

If it is the right time, how would you go about it?

we've recently been in a position of deciding what to tell ds1, who's 10 and recently diagnosed. He is able to explain his outbursts and 'red mist' episodes very well and that's actually what led to us seeking the diagnosis.

We've explained it in terms of that we know he likes 'same' and doesn't like 'different', he needs to have warning to do things, and it is because his brain is "wired" in a particular way. He's severely dyslexic, so we have already had the discussion about that, when he was 7. Explaining that to him gave him such a relief, it was like the weight of the world was lifted off his shoulders. We've told him that we all need different things, all our brains have 'systems' which help us do stuff, and that we understand the way that his brain works and what he needs, but it's different from what his younger brother or I would need. We all need different things to help us learn because of our age or our way of doing things.

This lot seemed to work. Since then he's been back to us a few times and said "is x because of the way my brain works, with ASD?" It honestly does help him. He's unfortunately (in some ways) very well aware that he processes things in his own unique way, and it does help him to know that it has a name and that we understand it, and there are loads more people out there like him, am also thinking of getting him a reasonably straightforward book about it if i can find something at the right level.

Hi cornwallia. There was a thread about this recently here which you may find useful.

Thanks. I found this which was quite interesting too
www.ahany.org/ShouldYouExplainTheDiagnosis.htm

Ds1 was dx at 4 and I told him at 7-on the whole it's helped him. I think they have a right to know, but then I tell the whole world about ds and i know some don't tell sports coaches and things like that. Information is power and the younger the better in terms of accepting it?

Yes, I agree really. It has sometimes felt like I'm telling him something bad about himself as he's never seemed to think anything is wrong but now he's more aware, it just seems wrong to be talking about him and not to him all the time.

I was just about to link to that thread as well - like I said on it, it helped DS massively

He was 11 when we told him what they had been assessing for (it had been 4 years by that point and another 2 before he was diagnosed ) and we had to, it's the one thing that still really upsets me about his late diagnosis, I was putting off telling him until it was definite - and it affected him massively, he had massive self-esteem issues because he was completely aware of his differences by that point and didn't have any reason why.

If he'd had a definite diagnosis I would have told him long before I did, he spent the last few years of primary school really unhappy.

Thanks. I will try to it naturally and casually. We had a conversation last night about things he found difficult and what he was good at but he got really distracted and started wandering off - embarrassment probably!

He knows his areas of difficulty and the good things about him and we know two other boys just his age (one in his class!) with AS so I often refer to them as being like him.

I was going to just drop in the word Asperger's in one of these conversations so as not to make a big deal, e.g. if we were talking about sensory problems or anger management, I could say 'you know we've spoken about your super sensitive brain and it's special powers, there are others whose brain is like that too and people have given it a name - Asperger's' and then just see where that goes

What do you think?

I think it would help DS2 too.

Sounds ok to me.

I must admit DS just kind of shrugged to start with, rofl, but we've had lots of conversations since.

I've found that stressing the different, but that it's not something wrong with him has sunk in well, that it's normal for him, there are other people with AS as well...that sort of thing.

We had a whole conversation once about operating systems, we decided we're all on windows and he's on Linux, so there's lots of incompatibility issues, but the system's still a good one, just not used as often - he liked that, but he's quite into computers, lol

Good idea to use the interests! Maybe I can do something along the lines of the Jedi's and the force!

www.amazon.co.uk/Blue-Bottle-Mystery-Adventure-Adventures/dp/1853029785/ref=sr_1_2?ie=UTF8&s=books&qid=1303293166&sr=8-2

I keep recommending this set of books - even though I still haven't read it myself, lol DD (10) says it was good, explained some things for her and she enjoyed it, she passed it on to a friend with AS (She's 9) who then passed it on to her little sister... it looked like a nice easy read and it's got good reviews.

DS skipped it in favour of a new Dr Who book, rofl, though I do agree it was a bit young for him, but should be fine for your DS - either to read by himself or as a story read to him

I just looked up my detailed post about my experience of sharing the diagnosis with my son last year - see here. I hope this is helpful.

3 things that I would add now though:

• These kids are usually quite visual. So if you can demonstrate things with sketches, cartoons or props, that would help. (In my example in the link, we had 2 piles of cards for example)

• My ds totally understood what I said, but has trouble applying the theory to his experience in practice. So even after getting through the hurdle of explaining it for the first time, you have to keep refreshing, and pointing out things, e.g. "that's bound to be tricky for you cos of your special brain..." etc

Come to think of it, you kinda have to do that with all kids, don't you, as they grow up, keep reminding and re-explaining.

• I did read another book by a 13 year old AS boy "Freaks & Geeks & Aspergers Syndrome" and he says that it is incredibly worthwhile explaining the diagnosis as early as possible, otherwise AS kids will come up with other self-damning theories as to why they are outsiders.

Good luck x

I told dd1 when she was 6, she was asking questions about her sister (why she doesn't talk) so i told her that dd2 has ASD, she then asked if she had anything? so i told her 'yes, you have Aspergers' and explained to her that is why she gets upset easily and suffers with anxiety, i told her she had a special gift which makes her good at maths and english and that she see's things differently than other people. She took it well, for a few weeks she used it as an exscuse but now she's fine with it.