Tuesday, November 17, 2009

when and who to share the diagnosis with

some people agonise over when they should tell their child their diagnosis.

I guess in some ways I had it easier because my kids were pretty grown up (Almost 10 ) when they were diagnosed. So we got the answer, I found some excellent books and we shared the diagnosis together.

Some psych's are emphatic that they be the ones to tell the child to ensure it is done with dignity/tact and respect. I guess I am a bull at a gate. I just found Cathy Hoopmans book Of Mice and Aliens and read it with my kids. They identified with the boy and decided that they had AS as well. Tony Attwood has a wonderful way he shares the diagnosis with the family that he described in the last seminar I went to in Perth.

For me giving them the answers straight away was the right thing for us. I know that others find it a real concern.

My lad thought he was crazy and that there was something wrong with him. He had a number of times mentioned that he wanted to kill himself. For him it was a relief to find out that there are others who think the same as him. That he was not the only one to have the same challenges and the same skills. The threats of selfharm stopped once he knew about ASD.

However I know of a family who decided that their child was not ready to have the diagnosis told to the child. As is their right they made their decision based on their knowledge of their child. Instead the teachers and teachers assistants were informed and it was explained that the child did not know.

HOWEVER another parent in the school were informed by staff that this child (mentioned by name and pointed out in the playground) had a diagnosis and what it was. This was mentioned by a number of staff, not just one. It was suggested to an undiagnosed family that they contact the diagnosed child's family and discuss ASD with them. This was a severe breach of confidentiality and should never have occured but it did. And the potential for harm from that was major. What if the school yard bully had been standing close enough to overhear the conversation? Can you imagine the pain of being told you have ASD by a nasty child in the playground? And what if the recipient of the knowedge had an unknown axe to grind?

You do need to be very selective about who you tell and when is the right time to tell. There have been people I have told and others I have not bothered about. But for me the most important thing was to make sure the kids knew before outsiders did. It can be done with love and acceptance and in such a way that it is simply part of who they are. Seek guidance if you are unsure, but dont let your child find out from the wrong people.

If you dont think your child is ready to share the diagnosis then make sure the people who do know are aware of the severity of breaching confidentiality.


  1. Thanks for that Donna, this is an issue Ive been struggling with this year. We have aggreed at this point that Grace is probably too young to understand what ASD means and perhaps being pointed out that she is 'different' when she doesnt realise may be the wrong thing to do.

    We discussed it with all the specialists involved and the school, including the school Psychologist (who is brilliant) and they all aggreed that perhaps she isnt old enough for that converstation.

    Whilst Im sure this is the right decision for now, there are days when I think she would be better off knowing, particularly as many people around her know....and NEED to know, otherwise she is seen as naughtly, definant blah blah blah. I remember reading Luke Jacksons biographical book 'Freaks, Geeks & Aspergers', written when he was 13yrs old, and he wished he had of been told sooner.

    Im going to trust my gut on this one, and if she starts asking questions or the anxiety gets much worse/frequent, I will talk to the Psych about how to tell her.

    We have the cute little book 'All cats have aspergers' so that could be a starting point....although her literal mind may find the concept of translating an issue cats have to herself may be a challenge!

    I meant to ask you how your girl feels about us discussing her ASD so openly in her presence? It doesnt seem to bother her, is she happy to talk about it if Grace has any questions?

    Thanks again Donna.

  2. Hi Deb,
    I just asked Kirsty and she said "Yeah I'm cool :)"

    Kathy Hoopman has a book that she wrote about a girl with Asperger's. I haven't read it but I believe if it is anything like her other books that it would be wonderufl to read together when you do decide to share the diagnosis.
    if you want to buy a copy if you google book in hand they ahve a wonderufl range of books about ASD and can give you a good idea of what might be useful for you.