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If your child has AS/ASD, when and how did you tell them?....

(16 Posts)
siblingrivalry Mon 20-Jul-09 22:40:56

...or have you told him/her?

DD1 got her dx quite recently, but we haven't told her yet. To be honest, I haven't got a clue how to do it in the 'best' way IYKWIM.

Also, I don't know if she is old enough yet (8)

My main concern is that her self-esteem is really low at the moment and she keeps talking about how much she hates feeling different (mostly linked to her sensory issues and anxieties)I don't want to do anything that will reinforce her poor self-image, but I know that she needs to be aware of her AS.

I would be really grateful for any advice or opinions -I must admit to be completely lost on this one!
Many thanks.

johnworf Tue 21-Jul-09 10:51:06

Hi, we have a 9 yo with AS. We haven't actually sat down and told him about it. He is already quite anxious about certain things and finds it hard to interact with his peers. We don't want him to think that he is 'not like the other children' and we are trying our best to bolster his self esteem. We think telling him at this age would do the opposite.

It might help to contact the National Autistic Society and see if they have any advice.


siblingrivalry Tue 21-Jul-09 10:57:23

I think we are thinking along the same lines as you, johnworf. I contacted NAS and got some ideas from them, but I have the same concerns that you do.It's a tricky call, isn't it?

johnworf Tue 21-Jul-09 11:33:09

Yes it is tricky. Their logical and literal meanings of things also potentially exacerbate the situation. We just try and play down things. Currently in school we are finding that his peers are pointing out his differences to him and this has led to some bullying issues. I could cry for him sometimes sad

We've just bought him a book called 'Bullies, bigmouths and so-called friends' by Jenny Alexander and is available on Amazon and other bookshops. He's a bit young to read it himself but we'll got through it with him. Hopefully it will help him cope better with situations.

It's a hard slog sometimes as you know, but personally I would play down the differences. When he comes home and says that X said Y about him then we try and put it into simple terms and explain it to him. It's hard to find out what's going on in his head most of the time though. He's very insular and finds it hard to express feelings, concerns etc.


siblingrivalry Tue 21-Jul-09 17:25:52

Your ds sounds very like my dd,johnworf. It can really break your heart to see them going through it. She is also incredibly insular and it worries us that we don't know what's going on in her head until she is at breaking point.
Thanks for posting.

Flamesparrow Tue 21-Jul-09 17:57:11

We are fairly sure DD has AS. It isn't hugely affecting her atm, but she isn't quite NT either iyswim.

She is now 6, a few months before turning 6 she got herself upset about not managing to stay at someone's house for a sleepover because she got freaked out and asked why other people could and she couldn't. We had a chat that didn't mention AS, but did go into her brain working a bit differently to some other people's and how she needs things familiar.

She seemed to accept that for now, but her differences with her peers are getting more noticeable, so I don't know how much longer it will last.

mummy2aaron Tue 21-Jul-09 18:13:29

My son is 6 and has always known he is different, he has appointments the others don't, timetables, picture symbols and reward charts. He knonws he has Autism but not what it is just that it makes him special. He is fine with it.

HelensMelons Tue 21-Jul-09 20:35:24

Hi my DS2 is now 8 - he was dx at 6 and we told him, DS1 and dd3 a short while later that he had a dx of autism. We had a little book that I read called "I have autism, what's that?" which we were given by our local health trust. It's brilliant and simple.

I don't really think, at that stage, that any of my dc's really understood the dx but because ds2 had severe speech difficulties it helped to perhaps put things into some context.

However, more recently the social communication gap is more evident between ds2 and his peers - he struggles with turn taking/ sharing/ changing of rules in a game /too much noise at times, etc and being able to offer not only Ds2, but dd3 and DS1, as well as other children an explanation has been beneficial. My dc's and other children realise that he's not just being difficult or stroppy which is really very helpful.

I realise that this is a tricky one, in our family and extended family it has been beneficial.

Goblinchild Tue 21-Jul-09 20:51:07

We discussed it when he was eight, and he got his dx of Asperger's when he was 9.
He's been fine with it all, liked having a way of making sense of meltdowns and routines and stuff mattering to him that others didn't care about. One of the books he enjoyed was 'All cats have Asperger's syndrome' but then cats are one of his obsessions and he liked the analogy.
He has become less confused and more proactive the more he has learnt about how his brain is wired differently, and how to cope with being mainstream in the NT world. So explanation and openness has worked very well for us.

siblingrivalry Tue 21-Jul-09 21:46:40

Thanks everyone -really good advice here. I suppose that I am just so scared that when we tell her, it will feed her insecurities and her her feelings of being 'different'.
I keep hoping that I will know when the time is right, but I suppose it will never be perfect. I know I need to find some good books;etc in preparation. Daunting, though, isn't it?

Goblinchild Tue 21-Jul-09 21:54:23

She knows she is different, whet she will learn is that she isn't alone, there are reasons and strengths as well as challenges that she will find.

retiredgoth2 Tue 21-Jul-09 22:03:36

The Geeky Urchin, now 12, only received his formal AS diagnosis this year.

...however, for a year or two before this, he had asked why he was different from others, and wondered whether he was 'learning disabled' (his words). I responded to this by giving hints that he should look up AS on the interweb, but didn't want to tell him for sure until we had a formal diagnosis.

...when diagnosed, I told him immediately, and gave him these books [[ d=1248209950&sr=8-1 All Cats Have Aspergers]] and Different Like Me

He was delighted. It all made sense to him. He especially loves the cat book.

I have been reading Freaks, Geeks and Aspergers Syndrome, by a 13 year old with AS. His advice is tell them. He wanted to know, and everything makes more sense now...

mysonben Tue 21-Jul-09 22:05:35

My ds is still a toddler, we will tell him when he starts noticing that he is a bit different to the other kids. The day he will say "i'm different. Why?" in his own words, then we'll know the time has come to tell him.
But only what he needs to know regarding whatever issues he may have at the time.

coppertop Tue 21-Jul-09 22:10:24

Ds1 was about 7yrs old when I told him. His self-esteem had taken a bit of a battering and he couldn't understand why he found some things so difficult.

I had a copy of the Kenneth Hall book and picked out some of the bits that sounded most like ds1 and read them with him. He was relieved to hear that he wasn't the only one and is now quite proud of it. When it was Autism Day a while ago he said "It's a day for me!" with a big grin.

Ds2 is 6 and has heard me talking about his autism but it hasn't really registered with him yet.

NoReturnsPlease Tue 21-Jul-09 22:26:56

smile at It's a day for me!

I love this!!!!

Quote of the week?????????

I SO think it should be

Hats off to Coppertop grin

sphil Thu 23-Jul-09 23:51:35

DS1 (8) is in the process of assessment for probable dyspraxia, though we are not entirely ruling out AS. He knows about it because he read a leaflet about AS when we were in the OT's waiting room and said afterwards that he thought he might have it!This led to lots of discussions about the overlap between dyspraxia and AS as well as diagrams of the autistic spectrum on the car window! When we told him about the upcoming assessment (Sept) he said ' Oh, I really hope I'm dyspraxic' and when I asked why, he replied 'Because it would answer all my questions about myself'.

We've suspected for years that he might have mild autistic traits but I've always been terrified that it would give his self esteem a real knock - in fact I think the opposite will be true. (Before anyone thinks I'm jumping the gun we've already had an informal dx of dyspraxiagrin)

On the other hand, one of his friends has been diagnosed with AS but doesn't know because he's never asked. His Mum, a good friend of mine, says that she'll tell him if/when he does.

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