When to tell?

My 9 year old daughter has been on the camhs waiting list for ASD diagnosis since Summer 2020. Her teacher flagged up that she may be ASD in Year 1 and the school have historically been great in adapting to meet her needs. 

However, we are noticing her beginning to struggle more as time goes on (especially socially) and I fear that she is learning to mask her ASD traits and internally suffering to a high degree (She'll often have unexplained meltdowns at home where she can't explain what's happened or upsetting her)

We haven't yet talked to her about the possibility of her being autistic. She suffers on and off with anxiety and we felt she was very young at the start, didn't want her to think there was something is wrong with her. But now she is getting older she is noticing differences herself and I fear she'll reach the conclusion there's something wrong with her (which is obviously not the case, she's a gem!) 

What age did people tell children they were possibly ASD? Should I wait until we receive a diagnosis? 

Parents
  • Hi, I don't have an answer, but I can relate to this- I was only diagnosed recently at age 25 and I really wish I had know sooner (it has been so helpful and has allowed me to be more accepting of myself and to work on strategies to better manage anxiety and energy levels)- like you say as you grow older, the differences become more apparent (I used to say 'I'm an alien'). As I didn't know why I was different, it also led to me sometimes pushing myself too hard to do things/ not understanding why I couldn't seem to do things that others seemed to do so easily and it did result in a lot of self blaming (I felt like maybe 'I wasn't trying hard enough to get friends' etc). I also didn't learn how to manage my energy levels and this has ultimately resulted in a lot of issues down the line with burnout etc. School can take a lot of effort- the masking is in part sub-conscious and I remember that when I came home each day I was just utterly drained from holding it together all day. My instinct is that it could be very helpful for her to know that she is autistic- I personally wish I had known sooner, but it's very hard to predict what the effect of telling her would be. In terms of how to tell her if you do decide to, I have come accross quite a few posts on here addressing this over the past months (including with tips of how to go about it , books, stories and resources that might be helpful)- Hopefully someone will be able to give you some tips or maybe you can find those posts again. If you do decide to tell her. I'm sorry. I really don't know what is best. I can only share my personal experience. 

Reply
  • Hi, I don't have an answer, but I can relate to this- I was only diagnosed recently at age 25 and I really wish I had know sooner (it has been so helpful and has allowed me to be more accepting of myself and to work on strategies to better manage anxiety and energy levels)- like you say as you grow older, the differences become more apparent (I used to say 'I'm an alien'). As I didn't know why I was different, it also led to me sometimes pushing myself too hard to do things/ not understanding why I couldn't seem to do things that others seemed to do so easily and it did result in a lot of self blaming (I felt like maybe 'I wasn't trying hard enough to get friends' etc). I also didn't learn how to manage my energy levels and this has ultimately resulted in a lot of issues down the line with burnout etc. School can take a lot of effort- the masking is in part sub-conscious and I remember that when I came home each day I was just utterly drained from holding it together all day. My instinct is that it could be very helpful for her to know that she is autistic- I personally wish I had known sooner, but it's very hard to predict what the effect of telling her would be. In terms of how to tell her if you do decide to, I have come accross quite a few posts on here addressing this over the past months (including with tips of how to go about it , books, stories and resources that might be helpful)- Hopefully someone will be able to give you some tips or maybe you can find those posts again. If you do decide to tell her. I'm sorry. I really don't know what is best. I can only share my personal experience. 

Children