Advice for sharing recent diagnosis with Son (8 Years old)

Hi All i'm new to the group

I'm after some tips and advice for sharing our 8 year old sons recent ASC diagnosis with him. I've read up the advice from the NAS website.I'm after some insider insight from experiences of parents who have already been through this, or adults who have been through the sharing of their diagnosis.

I am really conscious to do this in the best possible way for our very much loved son. He was diagnosed in the last 4-5 months and it is not sitting right with me that we havent yet shared the information about him with him yet. We dont want it to be a secret and we are so proud of who he is.

I would love it please if you can share any personal do and dont's or words of caution.

Many thanks in Advance 

  • Hi Naomi,

    My son is also 8 and has just been formally diagnosed. We decided to tell him in the first week. Partially because the telephone was none stop and I didn't want him to feel that he was being talked about or hear bits of information and become upset. We sat him down quietly and spoke to him in a way he would understand. We ensured that he knew he was gifted, we explained that it may be why he reacts to certain situations and we explained that there would be people contacting us wanting to learn more about how special he was. He hugged me and thanked me for telling him. He had lots of questions for the first week or so and we were honest in an age appropriate manner. He wanted to tell the world how amazing he was. We don't want him to feel ashamed of his diagnosis, or feel that everything has to be hush hush. This is part of who he is and being a part of the journey will hopefully give him more confidence, independence and control as he grows. You know your child better than anyone. You know his triggers, his responses and the best way to communicate with him. Keep it simple and make sure he knows its nothing to be ashamed of.

    Good Luck and please feel free to PM if you just want to chat about it.

  • Hi Naomi I see you wrote this 10 days ago so I'm not sure if this advice will be too late. However in case you or anyone else reading is interested, I have recently shared with my 9 year old girl her diagnosis (I told her soon after diagnosis).  For context, my daughter had been having some terrible friendship issues for about a year beforehand, was ostracised and was extremely down about herself. She had started saying 'I know I'm different' and saying she doesn't understand how to have friends etc etc so it was a heart breaking time before the diagnosis. I write all that because I think it will depend on whether or not your son is expressing he thinks he's different, asking questions about himself etc as to whether or not it's the right time (only you can decide of course).

    The advice I received was to start off by saying something positive about them, whatever is relevant to your particular child but it could be something like 'you know how you are amazing at remembering bus timetables' or whatever it is! Then go on to say you've found out that the reason they are like that is because they have something called autism. Then you could tell them what autism is, when I did this I made sure I never used the word disability, I said it was a difference in the way the brain works and the way she sees the world. I also made sure I told her there are many people with autism in the world, at her school there were likely to be at least one autistic child in most classes (I happen to know there are several in her class already so that helped!) and then we spoke for a while about the many famous and successful people who have autism. I did also highlight to her that autism would explain why she finds certain things difficult (in her case friendship and meltdowns) and she was very relieved t know there was a reason she was different to her peers in these respects.

    This is where I left it for now, as I know that over the years there will be many other things that crop up that she will ask about and didn't want to bombard her with information at this early stage. 

  • Yes, I think there's a lot to be said for growing up without the label but having the individual issues listened to. I think not knowing about my autism as a difference and disability helped me enter the adult world confidently. I'd have liked that my parents could have supported me emotionally through my upsets better, but they didn't have the knowledge, skills or capacity for that.

  • My nephew is 9 with an ASD, ADHD diagnosis and my sister-in-law decided not to share it with him at all (or at least that's her present stance). Her reasoning was that she doesn't feel he has the emotional competency to understand or process what this means for his current life/relational world. He doesn't yet see himself as different. I think it very much depends on how your son relates to his world. My daughter is AS and 7yo and she has already had conversations with me in which she says, 'Mommy I'm different, I don't understand myself.' I had a conversation with her that went; 'You are different and you are whole. You have challenges and you are loved.' I paraphrase but you get the drift. I didn't use the word autism because it is meaningless to her right now, and I'd much prefer she decides what the word means for herself before books, blogs and the media pile definitions onto her. It helped me that I'm AS and I thought about what I'd have liked to hear as a little girl, growing up feeling like an alien (was diagnosed last year at 31). You're his parent, trust that you know where he's at, you'll probably get it right.

  • I was diagnosed at 3 and from memory my parents shared it once with me when i was about 10. I didn't understand what they were on about so ignored it until i self diagnosed at 50 to then be told by the family, again.

    My mother focussed on the science (of the 70s), explained my left brain was poorly connected to my right, etc. This seemed daft given i was "brainy." Of course i had loads n loads of social difficulties but that didn't get explained, prob cos back them my mother or doctors didn't either. It was the social difficulties I'd have liked empathy, sympathy and validating. Being alone in the school yard, not knowing how to connect, getting bullied, being a bundle of anxiety around people.

    I'd say focus on the potential key difficult experiences, how he experiences them, and what impact it has on him. I really like the book All Cats Have Autism/Aspergers, I use it as an adult to share with people, plus Inside Autism Looking Out. The ADHD one with dogs is also helpful even for ASD. The book encourages sharing of difficulties and experience from the child's perspective. It's worked well between a friend and her son and when he saw it in my house he exclaimed how much he loved it.