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It took 52 Months!

Clair_Witch

After a long 52 month wait my 8 year old daughter has finally been diagnosed with ASD.

She was first referrred to the paediatrician when she began reception, she was excluded 3 times that first year and I lost track of the times she needed to be picked up early. Both myself and school knew something wasn't right, but trying to get the professionals to listen has been an absolute nightmare.

My daughter can make eye contact, although it's intermittent. She can hold a conversation just as long as it's all about her. And, she has a fantastic imagination, but that's often used to the extreme and as an escape route.

She'd go along to assessment, cooperate fantastically on a one to one basis and they'd say she didn't meet the criteria. They tried to blame general learning difficulties, which our senco disputed and it was only after I wrote to them demanding somebody help her  that they agreed to refer us to the tertiary panel. I was told this was our very last chance. For a long time I felt like nobody was listening to me and in the meantime my daughter's behaviour was getting worse each day.

Finally, Tuesday 19th April 2016 she received her diagnosis and now (thankfully) she can access the extra support and help she desperately needs.

Parents

  • Thank you so much for your reply.

    Wow. Nearly 16. That is a very long time to wait. It is such a shame that so many girls are going without a diagnosis and not receiving the extra help they need. They present so differently to boys and so many doctors are clueless.

    I think you're right and that a delay in diagnosis makes things much worse. Her anxiety levels and anger issues were going through the roof as the years ticked by. But she also wasn't sleeping well and some nights she was getting by on 4-5 hours. She's a biter, though never was until she began school, it started with staff and other children, and now she will bite herself if she becomes over anxious. We use a chewigem necklace, which is an absolute god send!

    She hates to write, but loves to draw. She has a special desk (she picked) where she can sit, put her desk lamp on and draw to her heart's content. She absolutely loves to spend time in her room after a difficult day in school. She keeps it so tidy, never a teddy out of place and of course they all sit in a specific order and woe betide me if I move one and don't put it back in the right place. Lol.

    I feel much more positive now that she will always have the support she needs through school and we have also been referred to a special needs health visitor. It will be fantastic to talk to someone who can advise and even just confide in.

    Only last month she was so upset, crying and telling me she was just different and why was this. Now I can explain it to her. I have bought some books aimed at children and the first has arrived today. 'My Autism Book' A child's guide to their autism spectrum diagnosis. It is pretty basic, but perfect to begin with and even a checklist she can do with her strengths. The does love ticking boxes and doing quizzes, so this should appeal to her.

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  • Thank you so much for your reply.

    Wow. Nearly 16. That is a very long time to wait. It is such a shame that so many girls are going without a diagnosis and not receiving the extra help they need. They present so differently to boys and so many doctors are clueless.

    I think you're right and that a delay in diagnosis makes things much worse. Her anxiety levels and anger issues were going through the roof as the years ticked by. But she also wasn't sleeping well and some nights she was getting by on 4-5 hours. She's a biter, though never was until she began school, it started with staff and other children, and now she will bite herself if she becomes over anxious. We use a chewigem necklace, which is an absolute god send!

    She hates to write, but loves to draw. She has a special desk (she picked) where she can sit, put her desk lamp on and draw to her heart's content. She absolutely loves to spend time in her room after a difficult day in school. She keeps it so tidy, never a teddy out of place and of course they all sit in a specific order and woe betide me if I move one and don't put it back in the right place. Lol.

    I feel much more positive now that she will always have the support she needs through school and we have also been referred to a special needs health visitor. It will be fantastic to talk to someone who can advise and even just confide in.

    Only last month she was so upset, crying and telling me she was just different and why was this. Now I can explain it to her. I have bought some books aimed at children and the first has arrived today. 'My Autism Book' A child's guide to their autism spectrum diagnosis. It is pretty basic, but perfect to begin with and even a checklist she can do with her strengths. The does love ticking boxes and doing quizzes, so this should appeal to her.

Children
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