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Explaining diagnosis to niece

Kimbo
7 months ago

Hi there

My 8 year old niece finally received her diagnosis of HFA late last year. She is a clever girl, very academic, very athletic, has deep social anxiety and selective autism. My sister has done a wonderful job of helpful Ng her develop a sense of self but struggles with a few things:

  1. She doesn't know how to tell my niece about her diagnosis. My sister knows that this may help her understand herself a bit better but doesn't know how to get the conversation started
  2. My niece struggled so much with the thought of Go Ng to school. She is ok when she gets there, but her anxiety is so bad the night before it's heartbreaking. She says things like 'my life is worthless I shouldn't even be here' and 'why can't my brain work like everyone else's?'

If there is any advice at all that you could share, we would be so grateful.

  • 7 months ago

    Hi!

    Below I have linked to a few videos that may help to explain autistic identity to your niece:

    Explaining Autistic Experience to Children:

    https://youtu.be/GOTdEi9_SI4?si=dhzvSWU2P96WXGGh

    This first video may give your sister some ideas about how to explain autistic identity to her daughter. It suggests that you can start the conversation about being autistic by describing general differences in the environment for example in nature and then specifically discusses the autistic brain.

    The second video includes experiences of autistic children who explain being autistic very simply. It also contains quotes from autistic children explaining what anxiety feels like as well as masking which your niece may find relatable:

    Amazing Kids:

    https://youtu.be/RBkiIHWybV4?si=E3uvQxKpUPeea21S

    Alternatively if you think your niece may like to read a book about being autistic, The Secret Life of Rose’ is great.

    It is written by an autistic child and their autistic parent. It explains experiences of school based anxiety and masking so may resonate with your niece:

    The Secret Life of Rose: Inside An Autistic Head https://amzn.eu/d/cCVTGOc

    I hope these ideas encourage a positive conversation about being autistic for your niece!

  • 7 months ago

    Dear Kimbo,

    Thank you for sharing this with our community.

    While we are waiting for the community to respond, our website has a lot of useful information about diagnosis, including a guide for parents and carers, which explains how to get your child referred for an autism diagnosis.    

    You can also browse our website for lots of other advice and guidance on a wide range of information about autism, including what autism is, socialising and relationships, communication and education.  
      
     To find diagnostic services in your local area, you can try searching on our Autism Services Directory, which can be found here.  The Directory also includes listings for support and social groups for autistic people, their families and friends.

    Thank you. I hope this helps!

    Best regards,

    Eunice Mod