Hello! Any advice welcome :)

Hi, just wanted to say hello to everyone! V long story short, been trying to get one of my twin daughters an ASC diagnosis since she was 2 1/2, (she's now 7). we saw numerous professionals, the most helpful of whom were the SALTS, who indicated that there was definitely something that needed assessing (they aren't allowed to state a diagnosis)! whereas everyone else seemed to think I was being a fussy mum. Saw several Community paediatricians who kept leaving so we had to go back to the start of the process again. Moved schools because they weren't supportive and finally had an ADOS a few months ago with a very inexperienced CP, which she passed with flying colours given how high functioning she is. Also had to fill in a Connors questionnaire, ours showed her above 70% threshold in all but one category and because she's v well behaved at school, the CP completely disregarded them. School have said her twin is also showing autistic traits but she presents very differently. School is trying to get info together to do a re-referral themselves. I just feel SO frustrated as everyone just seems to pick and choose the evidence they use ie school's, not me as the parent who is coping with daily meltdowns. Times two. I can't fault the school, who are being so supportive, it's the diagnostic system that feels like a brick wall to be broken down. Anyone got a magic hammer?! What's worse is, I'm probably going to have to go through all this again with the other twin! Sorry to go on but it's just a build up of 5 years of frustration.

Parents
  • An update: my daughter was finally diagnosed last week with ASD, dyspraxia and hypermobility. It took five years but totally worth it to see the look of relief on her face when the consultant told her the reason she finds things so difficult is because she has these actual things with names, she knows now she's not stupid, weird, geeky And all the other things she used to call herself. Her sisters understand what is going on now too. 

    I feel vindicated that I was right all along but incredibly angry that there are so called professionals who are not diagnosing children correctly. 

    Still, I have the confidence and the knowledge to hopefully get through the system quicker with her twin.

Reply
  • An update: my daughter was finally diagnosed last week with ASD, dyspraxia and hypermobility. It took five years but totally worth it to see the look of relief on her face when the consultant told her the reason she finds things so difficult is because she has these actual things with names, she knows now she's not stupid, weird, geeky And all the other things she used to call herself. Her sisters understand what is going on now too. 

    I feel vindicated that I was right all along but incredibly angry that there are so called professionals who are not diagnosing children correctly. 

    Still, I have the confidence and the knowledge to hopefully get through the system quicker with her twin.

Children
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