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When to tell your child they may have autism?

NAS67153

Hello there, this is my first post here. 

My youngest daughter is 8 and I suspect she has autism. Her behaviour at times is very challenging. I work in education and am by no means an expert on ASC but I have completed courses and training, as well as training about autism in girls. As well as working with children with autism. I recognise lots of signs in my daughter and have always felt she may have autism. Unfortunately due to her other parent disagreeing I never felt able to pursue my suspicions until recently. 

School have had meetings with me to discuss things they've noticed, which are all based around the way she interacts with other children, as well as her anxiety. She was due to see camhs just before lockdown but has now been removed from the list along with everyone else until the covid crisis is dealt with. 

My intention was to see what CAMHS say and then ask for an autism assessment. I've also completed the initial parent questionnaire with a private diagnosis company who said from her score autism is a possibility. I'm aware I could get a private assessment within 6 weeks (probably not at the moment) but the costs are huge. But then the wait for an NHS assessment is at least 18 months.

My question is as per the title really. When did you /would you mention autism to your child? She would not go to assessments and meetings with paediatricians without asking questions, so I couldn't wait till diagnosis surely? But I worry about giving her all this information about autism and why I think she has it, only for them to say no she has not got autism. Has anyone else been in the same boat and what did you decide to do? How did it go down ?

Thanks for reading and I hope I've not rambled on too much! 

Parents

  • Hi :) As the waiting lists are quite long, it might be worth waiting until she has an actual assessment date to avoid any anxiety about the wait. It's still worth giving her enough time to process what's happening before the assessment though (e.g. if the appointment is a month/a couple of weeks away, depending on what you think is best). I'm not a parent myself, but if it was me, I'd let her know what the assessment was for. 

    In the meantime, I'd highly recommend a book called 'Can you see me?' by Libby Scott and Rebecca Westcott. It's a lovely book and I wish I'd read it when I was younger. The main character is autistic, so your daughter might read the book and start asking questions about autism herself. 

    If and when you do talk to her about autism, I think the main message has to be that, no matter whether she's autistic or not, she's wonderful just the way she is and you'll always love her (I know that goes without saying, but it's always good to hear). The autism assessment could be framed as a way for her to get to know herself better - it's a positive thing. 

    I'd also recommend looking at Purple Ella's YouTube channel - she's an autistic vlogger with autistic children, so she has lots of useful experience and insight to share.

    I hope some of this is helpful and that your daughter's able to get the support she needs.

Reply

  • Hi :) As the waiting lists are quite long, it might be worth waiting until she has an actual assessment date to avoid any anxiety about the wait. It's still worth giving her enough time to process what's happening before the assessment though (e.g. if the appointment is a month/a couple of weeks away, depending on what you think is best). I'm not a parent myself, but if it was me, I'd let her know what the assessment was for. 

    In the meantime, I'd highly recommend a book called 'Can you see me?' by Libby Scott and Rebecca Westcott. It's a lovely book and I wish I'd read it when I was younger. The main character is autistic, so your daughter might read the book and start asking questions about autism herself. 

    If and when you do talk to her about autism, I think the main message has to be that, no matter whether she's autistic or not, she's wonderful just the way she is and you'll always love her (I know that goes without saying, but it's always good to hear). The autism assessment could be framed as a way for her to get to know herself better - it's a positive thing. 

    I'd also recommend looking at Purple Ella's YouTube channel - she's an autistic vlogger with autistic children, so she has lots of useful experience and insight to share.

    I hope some of this is helpful and that your daughter's able to get the support she needs.

Children
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