15 Year old daughter recently diagnosed with ASD

Hi all

My name is Sarah.  I have a beautiful daughter who has gone through some extremely hard times during the past 5 years.  Three months ago she was diagnosed with ASD at 15 years old.  She was misdiagnosed 5 years ago by CAMHS after years of trying to get assessed.  I feel very angry that the past 5 years could have been avoided or have at least not been as awful if she had had the right diagnosis and help and support back then.  She is depressed, highly anxious, has self-harmed and recently spent 3 months in a high dependancy mental health unit (300 miles away from home) where she was finally diagnosed!  As those of you in a similar situation know, we have good days and bad days and absolutely terrible days.  The time that my daughter was in hospital was the worse time of my life and I almost had a breakdown with the stress and worry of it all.  She is back home now and has tried to go back to school, however, she just found it too difficult and I will not, under any circumstances, let her get that ill again so one of us is going to give up work so she can be schooled online for her final year.  Very big decision but it's too late to get her a Statement of Needs now which would have greatly helped 5 years ago and opened up so many doors for her.  Her school have been OK but unless you have personal experience, you have no idea how the tiniest thing can make all the difference to her feeling safe and less anxious whilst there.  

I joined this site as I haven't yet spoken to other parents who are going through similar situations and I think it would help to make friends and support each other so we don't feel like the only person in the world going through these hard times.

I look forward to making new friends!

Parents
  • Our daughter felt the same about her sessions at Camhs - I think she managed 3 sessions then didn't want any more! Having structured group work with other teens worked better but they fizzled out due to lack of funds.

    I think you are 'spot on' re our girls giving up on things w/o understanding the root cause - hopefully we can adjust things better to suit their needs - it just takes a little time to learn and adapt.

    When things were really hard last year I contacted a charity and they sent a support worker who had first hand experience of autism - I know she will advocate for me if I need help in supporting my daughter at school - or I can e mail her with worries/ questions - it's knowing whom to trust.

    Things will come right for you - but take your time - the posts on here are really helpful/informative. Take care Y/L x

Reply
  • Our daughter felt the same about her sessions at Camhs - I think she managed 3 sessions then didn't want any more! Having structured group work with other teens worked better but they fizzled out due to lack of funds.

    I think you are 'spot on' re our girls giving up on things w/o understanding the root cause - hopefully we can adjust things better to suit their needs - it just takes a little time to learn and adapt.

    When things were really hard last year I contacted a charity and they sent a support worker who had first hand experience of autism - I know she will advocate for me if I need help in supporting my daughter at school - or I can e mail her with worries/ questions - it's knowing whom to trust.

    Things will come right for you - but take your time - the posts on here are really helpful/informative. Take care Y/L x

Children
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