I need advice about how to tell 9-year-old DS that he has asperger's...

[LaundryFairy]

We have just found out that DS, aged 9, has AS. Can anyone recommend a really good book or website with advice about how to talk to him about it in an age-appropriate and positive way?

Thanks so much for your reply, PolterGoose - some really good suggestions there. I especially like the look of All Cats have Aspergers, as DS already thinks that he is part cat and longs for a tail! I think that the way that your DS told his classmates sounds great too.

I know what you mean about focussing the positives. Just today in a restaurant our waiter was commenting on his amazing use of language. Adults really respond well to him (wish other children did more ). As your DS is same age as mine (9.5) I'd also be interested to know if his peers are supportive and understanding. DS' classmates are a pretty good lot on the whole, but there are a few boys who might make things a bit difficult.

My ds is 10 and was dxd when he was 8.

The three most useful books we have bought have been:

Can I tell you about Asperger Syndrome?

Different like me. My book of Autism Heroes

and more recently

The Survival Guide for Kids with Autism Spectrum Disorders

He chose not to tell people at school at first, but has now told his best friend and one other child whose sister also has AS. I think this was a wise choice as, whilst the other kids in his year can't fail to notice he is different and needs more support than they do, there are certain pupils who would almost definitely use a dx as leverage for bullying and teasing.

We talk a lot about how the world needs people to be different, as it means we all have different strengths and therefore have different things to contribute. If we were all the same, everything would be mediocre, bland and boring, there would be no incredible art or science breakthroughs or incredible medical/surgical procedures etc. I have explained that no-one is good at everything and that we all have some things we are good at and others that we struggle with and then talked through his specific strengths etc with him and explained that that's why he needs more help with some things than some of his classmates do - but then again, they aren't amazing with facts and computers like he is.

He is still taking it all in, but we have an open dialogue and he asks questions on pretty much a daily about what having AS means for him and whether or not certain situations were affected by him having AS etc. He has days when he says he hates having autism, but on the whole he appreciates that it has both good and bad sides to it.

Hi Moosemama,

Thanks for your post and your recommendations - I'll check them out. I was interested to read about your DS and classmates too. I have wondered about telling others at his age and how they might react. I'm certain that my DS' two best friends would be wonderfully understanding (interestingly, one of them also has a sister who is Autistic), but I am not as confident about some of the others. Luckily, he has a wonderful teacher this year who I believe will be very supportive.

I have been told that understanding about Asperger's is very helpful to children, and I can kind of understand that. But, being new to all of this, I guess I still worry about how he might take it in. I want it to be something that helps him rather than defines or worries him (but of course, he is a worrier!).

So thanks again for your post - it is really good to hear about other parents' experiences around this.

I would second the suggestions here. We used the blue bottle mystery and can I tell you about Aspergers.
I have to say we tied ourselves in knots about explaining Asperger's and then DS read the books, we had a brief chat where he acknowledged that the people in the books were like him, and then it wasn't mentioned again for ages. It was sort of " OK thanks for telling me, now can I go and do XYZ?"

My dd is nearly 10 and was diagnosed with AS when she was a lot younger. We used some of the books already mentioned to explain it to her. Again, we concentrate on the strengths that her AS gives her. As she is getting older and more self aware she is commenting more about things she finds hard and we chat about that side of things too. We chose not to go down the 'whole class' route as we felt that it might give some of her peers something to tease her with. I think they already pick up on the stuff she finds hard as well as the things she stands out for because she is good at them.
We might sometimes mention casually if we see someone on tv or in a newspaper who has a special talent, or who is fantastic at science (my dd loves science!) "I wonder if they have AS?" and it helps her to see the positives.
One funny thing we also get is that she is now prone at times to using her AS as an excuse for doing naughty things in a slightly tongue in cheek way!

Hi LaundryFairy , as I have recently been in exactly the same position as you (DS, aged 8, dx'd with AS in March this year), here are some ideas which I hope will help:

I can endorse the book 'Can I Tell You About AS' which is brilliant, clear and simple (already mentioned on here) and we found it especially useful to show young friends/teachers who might also need to be informed; has helpful pictures too.

The book which DS really latched on to, and found totally absorbing, was Luke Jackson's 'Freaks, Geeks and Asperger's Syndrome'. The author is/was a young teenager himself, so it has a lot of extra realism!

To highlight the positive side of it too, I got DS : 'Different Like Me: My Autism Heroes' by Jennifer Elder (Jessica Kingsley Publishers) which gives a range of examples of very gifted individuals (eg Einstein, Mozart) who are thought to have been/be on the spectrum. It has helped him a lot to access some of the resources that are out there to help him understand how he is special and different, not worse, and that his AS can also be seen as a gift. Hope this helps, good luck.

I told DS when he was 8 (maybe 9).
I waited for a time when he came to me very upset about struggling with friendships and it seemed a natural time to tell him.

Another child in his class had AS and the teacher had read out the book of Can I tell you about AS to them the year or so before (around the time DS was being assessed) and he had recognised himself in a lot of the characteristics, so I borrowed the book from school and we went through it together.

Just to add to my last post, I also struggled with disclosure - (how, when, to whom, exactly..etc etc). In the end I told DS fairly soon after his dx as he was struggling in a friendship situation and I knew I would need to inform the friend's Mum and the other child too. Felt DS should know before anyone else, and it did help him a lot to finally have the knowledge I think. It gave him quite a lot of specific information as to what his issues were and what he could do himself to overcome them. The label itself is both a blessing and a curse as it opens up avenues of help but can be a burden too, to the child. At the end of the day though, I think knowing is better than suspecting but not knowing, and the important thing is to help the child see it as something that can also be very positive and unique.

Thanks to you all for posting your suggestions and own experiences - it is so very helpful. I have been on Mumsnet for six years now (mostly lurking), and it is wonderful to find such generous support and advice here when I really need it!

Just wanted to update all of the lovely people who gave their great advice. Told DS yesterday and it went quite well. Emphasised the positive as suggested and gave him the book Can I tell You About AS? which he proceeded to read out loud to us.

DS kept asking about more of the common traits of people with AS, and actually said that it was a bit creepy how close it was to him, but on the other hand he felt really good about how it made him special and different from most kids. When we finished, he said 'Thank you' for helping him to understand why he is the way he is (cue me fighting back tears!).

So thanks again - it really helped me just having read your stories and words of wisdom.

I told my 8 year old ds about 2 weeks ago. I didnt have a choice, as he asked me outright.

The Visual Impairment lady had visited him in school and gave him a leaflet. He read what she did in the leaflet and then asked me 'do i have a visual thingy' He then asked me lots of questions about this and concluded 'is it a condition like hayfever and asthma' I replied 'yes, kind of'. He then asked why i had not told him about this before and was rather put out that i had kept this from him.

He then asked me 'do i have any other conditions' and i then told him about autism and he asked lots of questions and i answered his questions.

He took it very well and was rather excited about telling everyone!

He was more upset that i had not told him about it before then.

He hasnt asked anymore questions about it since and handles telling people very well. He told my mum i have autism and an eye thingy. She asked him how he felt about this and he replied 'i dont feel any different, im still me'

Nice to hear that your DS feels so positive about it, Claw. I hope that my DS can keep that sense of 'I'm still me' too.

Oh ive just realised that you told your ds and it went well i was actually quite surprised at just how well ds did take it. I think i was more worried than him!

Ds also asked about how other people with autism felt too and how others there were etc. He is also interested in if others have any other conditions and will ask them.

many