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New diagnosis

Alice116
over 7 years ago

Hi,

I was directed here by a "support worker" as my little daughter has now got an initial ASD diagnosis and we are now waiting for the full reports and paperworks to come through - we are hoping that everything might be in place for next September but I really have no idea of timescales or anything as is all so new!

I feel devestated by this being confirmed but it wasn't really a suprise at this point. Nothing is going to change for her and out little life is still lovely. I am upset because she is now 5 and as she has got older she has become more and more profoundly noticable as "different" - people don't understand her. Children won't play with her and adults are not kind to her. She doesn't mean any harm but stands too close or "talks" too loudly, she just doesn't understand. I get what she means most of the time but school has been terrible for her confidence as they try to change who she is and can't get her to conform so punish and she is so sad. What happens when I'm not there? Or something happens to me (I'm not going to live forever)? It's just us so who will protect her?

She is the best little person and is making progress in her way - I can see it - but she needs patience and compassion and if she doesn't get that now and with ASD the prajectory of progress isn't suddenly going to be "normal" - what does her future hold?

Are there groups or lessons where I can learn ways to help her understand the world or places she can play without people thinking it's odd that she chews things still?

As I said, I think she's amazing but the world is not a kind place to her now and I don't want to lose who she is just change the world for her! 

Parents
  • over 7 years ago

    Hi Alice,

    My mum didn't send me to school when i was 4, as I wasn't ready! I only started talking at 4, and couldn't whisper or control my voice.  However, I did OK at school, I got four o-levels, I am 54, and am now doing a PhD!  It has taken me time to get these things sorted, but one thing my parents did was not force me to be normal.  They loved the way I was, thank goodness.  You need support of other parents or autistic people themselves.  My friends are talking about going to Autscape in Northampton this year.  Sadly I can't go, but it may be something you can do at some stage in your daughter's life, so she can meet other autistic people in our own environment.

    I didn't have friends, and still don't.  I manage just OK without them.  Don't think in a neurotypical way (non-autistic) for your daughter, it may just cause her stress.

    Take care of yourselves,

    M.

Reply
  • over 7 years ago

    Hi Alice,

    My mum didn't send me to school when i was 4, as I wasn't ready! I only started talking at 4, and couldn't whisper or control my voice.  However, I did OK at school, I got four o-levels, I am 54, and am now doing a PhD!  It has taken me time to get these things sorted, but one thing my parents did was not force me to be normal.  They loved the way I was, thank goodness.  You need support of other parents or autistic people themselves.  My friends are talking about going to Autscape in Northampton this year.  Sadly I can't go, but it may be something you can do at some stage in your daughter's life, so she can meet other autistic people in our own environment.

    I didn't have friends, and still don't.  I manage just OK without them.  Don't think in a neurotypical way (non-autistic) for your daughter, it may just cause her stress.

    Take care of yourselves,

    M.

Children
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