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Daughter recently diagnosed- should I tell her about diagnosis?

flower76

Hello, my daughter was diagnosed this summer. She has many characteristics of autism but there are things that she really does not have. She plays very imaginitively and I often hear that this is one of the main things about children with autism, she also never has melt downs but will just go to her room and read a book.

The main things she has problems with are tics and saying hello and goodbye to people. She also seems not to feel the cold or pain much. She has friends, they are all a little quirky as she is.

The thing is that she thinks she is great and I don't want to introduce this as she may see it as a problem and it could knock her confidence. She is intelligent and she loves reading books. She can come accross as being rude to others as she says what she feels, this doesn't seem to bother her though.

I just don't know whether to tell her about the diagnosis, I would like to explain to relatives so that they understand her a little better but not until I tell her. I also worry about what other people will decide about her when she has a label due to their  ignorance.

Any advice would be great.

Thank you

 

  • Have never posted here before so if I do anything wrong or that I'm not allowed to please forgive me! 

    My 9 year old daughter was also recently diagnosed (Dec 15).  We are making sure she knows but our CAMHs worker is going to tell her as we both feel she will accept it more readily from someone other than us.  We have already had several conversations (that she has instigated) around how she is different from other children.  These were all before the diagnosis so we didn't want to say anything specific until we knew for definite.  We have got a book by Alis Rowe who runs the Girl with the Curly Hair project (CHP for short I think).  You can get it from Amazon.  The one we have is called Asperger's syndrome: by the girl with the curly hair: Volume 1 (The Visual Guides).  It is written specifically about/for girls on the spectrum and is, as the name suggests, a very visual book.  I think Alis has also written a book about her experiences that is not a visual one - I've not got it or read it so can't comment on it, but if your daughter is an able reader it might be worth looking at, or to read together.

    Good luck with whatever decision you make - I think the previous advice about doing it in a positive way is so very good.

  • Thank you for the advice.

    I have been trying to find a book that I could give her or that we could read together. The ones I have seen seem to be aimed more at boys, is anyone able to recommend any? She is 9.

  • PLEASE don't hide this from her. as an autistic women and mother of an autistic girl, i really feel strongly that you need be honest about it.

    it's all in how you tell her - if you present it as a difference (which it is) rather than as a defect, she will accept it, rather than have the shock of a great reveal later on, especially of it comes about because of struggles.

    tony atwood in his big book on aspergers (sorry can't remember the full title) describes really well about telling kids about diagnosis, about it being a positive thing.

     I wish i had known earlier and i really feel the earlier a child knows anything the better they accept things. little by little you explain  and as they grow / ask you explain more. keep it positive, factual.

    labels are for soup cans not children. autism is a diagnosis. some will understand it, some won't, but why let the ignorant define your choices??  it's inevitable you will have to educate some as to what autism means, asmany will only have narrow stereotypes in their heads.

    there are so many good books out there for kids and teens and these may help you raise it.

    good luck with telling her.