I have asked the nursery to obtain a written copy of the assessment so it can be included in the overall diagnosis by the pediatrician when we eventually proceed to the Child Development Clinic assessment stage. We have now re-booked his 'official' in-nursery assessment to take place at the Montessori.
Given current modern thinking on intervention this means we should have a statement of special educational needs well before he actually starts Reception. We're pretty lucky here that we had an inkling of Tokoroth being on the spectrum and going straight to the health centre where we struck gold with the community nurse who assessed him. Speaking last night to the mother of a child recently diagnosed with Asperger's (or HFA depending on the day of the week and pediatrician they see) they made the classic mistake of seeing their GP first.
In fact, come to think of it, we also got derailed by our GP. We presented Tokoroth, aged 2, with what we perceived , correctly it turned out, as hypersensitivity. This was when I was still not fully convinced of a bigger problem because I only knew the diagnosis for classic autism and not the ASD sub-types. The community nurse may have actually suspected ahead of us and referred us to the GP to get Tokoroth referred to audiology. The nurse could have done this but the protocol is to go through the GP.
The GP looked at the letter from the community nurse, looked in his hears, clapped his hands a few times (I'm paraphrasing) and reported that his hearing was absolutely fine. The GP did not refer him to audiology. It was a year later that, once more, we presented Tokoroth back to the nurse with our increased awareness of a) there being a bigger problem and b) the likelihood that he was on the spectrum (ASD was, by then, on my radar).
The community nurse was incredibly annoyed that the GP had not carried out the referral. Hypersensitivity does not mean he can't hear or that he has any physical problem. Having satisfied himself of that he should still have carried out the referral a) because that's what he was asked to do and b) because hypersensitivy can be an indicator of other problems, i.e. autism.
So, even armed with knowledge and a bloody good health centre community nurse we lost a years worth of intervention because autism and other similar disorders are off the radar for many, but certainly not all, GPs. It's a known issue and it's being addressed. A GP can even miss her own son's autism.
I'm not being negative here because our GP is a good GP and the rest of the NHS machine around the ongoing assessment has been bloody good. I'm just aware that we had our own knowledge, a child psychologist in the family and a good health centre to keep pushing. I do wonder how many children taken to the GP by their parent fall through the cracks. As recently as 2002 over one in eight GPs said they would not know how and where to refer a patient with autistic spectrum disorder.
Anyway, for us all is going well and little Tokoroth grows into an ever more entertaining and amusing child every day. He is joining in play with other children, his delayed echolalia sits alongside an ever growing vocabulary and his repetitive behaviour is arguably more flexible more than mine currently is. We just keep walking the walk and see where we all end up.
