Published on 12, July, 2020
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.
Hi, thanks for the supportive response. Unfortunately in our area it is the CPs who do the diagnosis and we have been told that referrals to CAMHS only have a 1 in 4 chance of being accepted. I know quite a few other parents round here who are in the same boat, some have been told by CAMHS that their child is autistic but the CP still won't give a diagnosis. With them being girls, it seems to be even harder to convince the professionals. My GP tried to refer us to another team but it got knocked back (by the CAMHS in both areas). I would happily pay and go private but the only thing that is stopping me is the school told me it would not carry the same weight as an NHS one. My GP was not happy when I told him that, he believes both are the same, he's trying to get us referred for a 2nd opinion to a clinic that does both private and NHS work. we need to know for the whole family's sake, both twins feel different and its hard to explain why to them.