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,
so sorry if I caused offence re 'geeky'. I don't mind it either, she was using it as a self-derogatory term, I think it's some thing other children have called her, sadly. Obviously we will do our utmost to help her recognise all her unique abilities!
I'm not really angry with the professionals per se, who do a difficult job in the circumstances but the last one really was not capable of doing her job. If she has missed other children, it is a real shame.
thanks for the support
Firstly, well done for working it out and pursuing it to the right conclusion. Hugs to her and I hope you find that the diagnosis helps.
I have some sympathy for the professionals - if you have watched the Born Naughty series on Channel 4 it is quite difficult to separate bad behaviour and upbringing from a diagnosable problem like autism. Also, the whole mental health system is based on trial and error - it just isn't possible to think in the same terms of precision that we expect from the physical health system where an X-ray or blood test can give a very confident diagnosis.
I don't think that there isn't much point in being angry - I know this is easier said than done but don't let it hurt you. Always try to look forwards rather than backwards.
I don't mind being geeky! I don't think of it as being a critical term because, in my mind, it implies being clever and different.
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.
Can I go back to the beginning on this one? Exactly why is there a need for a diagnosis? Is the child disruptive or inattentive or something or is she just different? Not everyone with autistic traits needs an actual diagnosis.
If it ever becomes such an issue that your daughter becomes a legitimate danger to herself, or threatens it - one way you can immediately get on the radar is going to A&E and asking for the child to be admitted for their own safety.
My son kept writing suicide notes, and tried to act on it a couple of times when he was 10. That resulted in us admitting him to hospital for his own safety following a major meltdown that we couldn't manage. In the emergency CAMHS meeting that followed the next day, he admitted lots of things we weren't aware of that were a major concern. We got a same day referral to a psychiatrist at the local CAMHS, and they immediately raised him up the priority list and arranged follow up appointments. After that we had appointments at least once or twice per month - whereas before the incident we were waiting 6 months+ and just felt dismissed as parents
I've done it before, think my score was about 18, but the trouble is, some of the questions are hard to answer as I have a hearing disability which makes social situations difficult, so i think the answer I would select for some questions would skew the result, if that makes any sense?!
moving definitely not an option! Will keep slogging away and try and find a local CP with some experience/training of diagnosing girls.
I'll second FlyingSolo's suggestion. I actually think that this should be done for everyone with a diagnosed family member. The test is reliable (it comes from an impeccable source) and useful.
A drastic solution which may not be possible for you... but I've heard of people doing it, is relocating to an area where support from the NHS is better...
Also, I suggest both you and your husband take the online tests (http://aspergerstest.net/aq-test/) which isn't a diagnosis but suggests whether there is a concern to think about. My wife scored 32, her brother scored 40 and I scored 18, none of which really came as a surprise when we started looking at the bigger picture
Hi, no offence taken and very gently put! Made me chuckle. My husband's family have several older family members who haven't been diagnosed and there are mental health issues on that side as well. Of course, I've been analysing myself and wondering... I have been promised support for any future meetings with the CPs. Incidentally we have an older child who doesnt have any traits.
Thanks :)
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.
If both children are showing traits then can you see which parent (or both) is also on the spectrum? The reason for raising this is that a parent who is unaware of their own autistic traits may really struggle to communicate the child's problems to the people in the system that should be listening.
I hope that makes sense and that you won't be offended by the suggestion!
Keep on fighting.. I hear your pain... Keep on pestering your GP for a referral to CAMHS. Just go in prepared with everything you and the school have done so far to help that hasn't worked, and go armed with a long list of traits and examples that support you. If that GP doesn't listen... try another... it just takes one to give a referral... and then its on to the CAMHS waiting list