How/whether to tell 11 year old DD about her ASD dx?

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My DD is 11 and just started at secondary school. She was dx with PDD/NOS (now called ASD) when she was 5, and the primary school worked very well with her to improve her behaviour in class and deal with the stress that being in school caused her.

She has done so well over the years and has done well academically, and can now behave well in school. The real problem is now with social issues - she finds it very hard to make and keep friends, and has been bullied quite badly in her last couple of years at primary school.

She has been very miserable about her lack of friends and her feelings of isolation. SHe was hoping that at secondary school it would be easier to find people on her wavelength. However, friendship/social contact is still a huge problem for her. She has mild ASD so doesn't appear drastically different to others, but she is different enough to be picked on/teased and to a certain extent avoided by the other kids.

I have never explained to her about her dx, just said that some people find school/friendship more difficult to deal with than others and that's why she's had various sorts of help via the school.

However I am wondering when or if I should explain to her about ASD and the fact that there are lots of other people like her, that it is a recognised 'condition', etc etc.

Would it help her or make her feel even more down about her situation? What age would be appropriate? Has anyone been in a similar situation? I'd love to hear about your experiences - when I asked the paed she was quite unhelpful..

My ds is much younger (8) and whilst we waited until he got his dx to really talk things through with him he already knew he was different to his friends. We had explained that everyone is different but he knew that with him it was a bit more different IYKWIM. We got him a book and read it with him to help him understand what it means to have his dx (ADHD and AS). We haven't finished the AS one yet but I think it is helping him.

Have you read Luke Jacksons nook "Freaks, Geeks and Aspergers Syndrome"? In there he says it really helped him when his mum told him about his dx. I've read other books that have said the same thing but I can't think what they are know.

Thanks for your comments dustystar. Yes, I have heard of the Luke Jackson book, but to be honest the title put me off.. I was worried that DD would also refuse to read a book about being 'freaky'. However maybe I should get a copy and suggest she have a look at it?

I'm scared of telling her all wrong and making her lose hope of ever relating to other people. Rationally I know that once you name a problem you can start to deal with it, but it's hard to make that decision on behalf of another person - god, who'd be a parent??

Its a really good book - well written, informative and easy to read. I worried about how to discuss it with ds too and my paed at the time was equally unhelpful. Luke Jacksons book is a bit too grown up for ds so we are reading Kenneth Hall's book with him.

I honestly think that its better to disuss these things as soon as you can. Others may disagree with me but I can't see how it helps to put it off. No matter what age they are it will always be difficult. Good luck with it

thanks again dusty! I agree that it would be better to be open about it, but still wondering how to phrase things/try to make it positive etc. Has anyone got any experience of telling an almost teenager this sort of news - how do you approach the subject?

She goes to a school that has a centre for autistic kids within it. But she avoids it like the plague because she's picked up on the fact that most of the kids see them as 'weird' and she wants to dissociate herself from anything like that - she's already been picked on for being weird, different, etc.

Sorry to go on about it - but can't help worrying about whether it will be a huge relief for her to know there is a reason for her difficulties, or if it will just seem like a life sentence..

I told my 5 year old her dx of sensory processing disorder cos she kept asking why she hit other children when she did not mean to. I explained in simple terms. I have always told her why she goes for therapy.

bump.. has anyone else any experience of talking about ASD to an older child?

DD3 was has dyspraxia we found this out when she was 7 and we told her soon afterwards as she was noticing her writng was different the other children abd that she found it tok her a lot longer to do things,

I totally agree that you should talk to your daughter about her autism. In my experience, knowledge is power and knowing about his AS has helped my son to understand his difficulties and work on finding ways around them. You can't solve a problem unless you acknowledge it exists, iykwim.

There are workbooks you can get to discuss autism and help your child work through coming to terms with a dx, but I think (others may be able to put me right on this) that they are aimed at younger children.

There's also Can I Tell You About Asperger Syndrome by Jude Welton, aimed at explaining AS to children 7-15 years old. Worth a look as it might suit.

One word of advice. Most children, on learning of their dx, will use it as an excuse and will say "I can't help it, I have autism". I personally think this is a perfectly normal reaction so I'd suggest you go with it, accept it as something she has to work through, and explain to her that it's not an excuse but a reason why things are difficult for her. Despite her dx, she still needs to understand that certain behaviours and traits are not appropriate and that she must learn ways of coping with uncomfortable situations in a socially acceptable way.

Good luck!

I think it would be unkind not to tell her. But as Streaky says be clear that it's not an excuse but the reason why she has social difficulties. The bad news is that it means she has to make the effort to learn skills which (she may notice) her peers just seem to know, without learning.

A menber of my family was diagnosed aged 40 and he was delighted. It explained why he found some things so hard - gave him a reason, which was not his 'fault', if you like.

The National Autisitc Society might have useful resources.

Also, the school is bound to have experience of children in your DDs situation - can they offer any support? Some schools run 'groups' (e.g. at interval/lunchtimes) i.e. the points at which school life can be hard going if you are having social difficulties.

Thanks again for your contributions. I think that we have to bite the bullet and talk to her about it. I think I've been guilty of trying to spare myself a difficult situation rather than really considering her needs..

Thanks streakybacon and probablyaslytherin for pointing out the 'excuse' thing - I am sure she would use it as such!!

I'll find a suitable time in the next week or two to talk to her about it - and get her dad (XH) onside.

i told DS1 that he had ADHD when he was around 11/12 because he had other problems too which when explained (IE dyslexia) meant that he didnt feel such a failure that it was nature he was having to battle against. He asked at the time if this 'dyslexia thing' also made him forget stuff (he got (and still gets) totally frustrated by this)... so i had to explain, actually no - thats caused by something called 'adhd'. and that made him feel better too. DS2 is also dyslexic and was feeling completely useless, until i explained what the problem might be and what it might affect. He didnt so much as use it as an excuse - but hopefully pinned as many of his shortcomings down to it as he could, in an attempt (i think) to not feel quite so inadequate. On both occasions i stressed that "its not an excuse not to do stuff, its a reason to try harder".

I think that it definately helps in the self-esteem stakes, to explain why they might be struggling when other kids dont. I also pointed out celebs, rich people, and famous alike - who has what conditions (billy connelly has ADHD, 'harry potter' has dyspraxia, einstein had dyslexia, both michealangelo and da vinci had autism.) which makes them feel kinda 'elite' too

DS's 1-4 all know that DS5 (2.4) is autistic, but im not sure at what point (if any) he'll ever know - i suppose it depends on his ability to understand when the time comes.

I agree with the others. My dd is 8 and we've always wondered why she says/does the things she does which make things difficult for her socially. She's also found learning a struggle from day 1. A dx of AD/HD (not hyperactive) and ASD is most likely early next year. So far we've just said she has some special needs which she's getting help for at school, but haven't fully explained her condition as she's not officially dx'd yet. We definitely plan to tell her though as I feel fore-warned is fore-armed and I'm looking ahead to her teenage years which I fully expect will be difficult for her.

I think she will cope better if she knows what the problem is and hopefully will be able to surround herself with a few good friends who are accepting of her condition and will understand her and that sometimes she blurts out things before she works out the social implications etc. I do really worry about this though and I fully appreciate what you mean.

I told my DS a few months ago. He's 10. His AS was causing him all sorts of problems at school, which resulted in him leaving mainstream, I felt he needed some sort of explantion.

I was very worried about the 'I can't help it, its because I have AS' excuse, he's not too good at taking responsibility for things at the best if times! So far though he hasn't used it at all.

I explained to him that we were all different, and that some people need more help with certain things than other people. I went onto explain the things he needed some extra help with. I also told him how great it was to have AS, helping him to be maths/science/computer genius. We also talked about some famous people who have AS. He was really interested in Bill Gates, and has done some research and decided that there is a gap in the market for another Microsoft which he will create when he has a spare 5 minutes!!!!

I agree with the others that you should tell your DD. I has certinally been a positive step for us.

We told our ds about 2 years after dx (so he was 8) because it became obvious that he was struggling in many areas, especially the social ones, and that adults treated him as a naughty child.

We used the Luke Jackson book too. It was a positive thing for our son, we explained it in terms of him being extra special, having extra special skills (he exceptionally good on computers for example) and some difficulties which are because of his condition and not his fault.

It helped him tremendously, as he'd been aware of being different for years but hadn't been able to verbalise it to us. It was good for him to know it wasn't anything he was doing wrong, and it helped adults understand why he behaved the way he did. Most of them approached him in a totally different, positive way.

My 11 yr old DS was dx'd with AS in June. DH very unsure about telling DS but I was confident he'd be ok with it.
I didn't plan it, he came home from school in trouble (again) for swearing at a dinner lady. I told him off, obviously, but when he became upset I said I did understand that it was harder for him and the reason why was becauase he had a condition called AS.
DS asked "is that what Einstein had" when I agreed he just said "OK" and that was the end of it.
I got a booklet from the NAS website for £1.50 which is for teenagers with AS or ASD and we read it together. It was all very calm and matter of fact.
It all went very well and wasn't the big deal that DH feared it might have been.
Good luck!

Why wouldn't you? If it were me, I would hate to find out from someone else, and know that others knew. And she is likely to, at some point. My DD has just been flagged up as needing 1:1 at pre-school, although I don't know exactly why yet, but if she is diagnosed with a condition, I will definitely tell her as soon as she is able to comprehend it.

my ds (11) has had a recent dx of aspergers.
I have used a drip drip approach as the need has arisen over the last few years. He had become aware of the meanings of the words before he had the official diagnosis.
What i found was that he was beginning to form some of the questions in his own mind anyway. He was clever enough to begin to try to question what was different about himself...and he was looking for answers.In a way..the diagnosis came at the right time for us.
We have used the nas booklet mentioned earlier and also the Kenneth hall book.

I wish I'd known when I was young. It would have explained SO much about my life. If done positively and with love, then it's the right thing to do. I too would recommend the Freaks, Geeks and Aspergers book.

Thanks so much for all the messages left over the weekend. It has confirmed what i said last week - I've decided to talk to her about it over half term so she has plenty of time to think about it and I have time to get together some more information that might help her. Also, I can forewarn school that she might need support in talking about it to her peers, if she decides she wants to share it with them.

Really feel grateful and supported by you all

Sorry to join this thread so late. Just to add that your local autism support group may have social stuff for aspies, or befriending schemes. Our son has never had a best friend but I know of other aspies who do and it may be easier for your daughter as girls are more empathic in general, it may help her and her peers to know there is a physical reason for her problems. Guides or other structured youth clubs such as st Johns ambulance may also be helpful for your daughter. My son has also gained a lot from youth club by being a helper. There is a lovely photo book about cats and aspergers you may want to look at and see if it would be helpful.