DS1 has an ASD and sensory processing problems.
Optician rang yesterday to tell me that DS1 has had "some changes" in his eyes and is being referred to the hospital. He suspects ocular albinism is causing the light hypersensitivity.
I got my mum to speak to a friend of hers who is an ophthalmologist, and he told her that the optician has basically been using us for money - he should have been referred to the hospital at the first abnormal light sensitivity result (nearly a year ago). We have been through about 9 pairs of tinted glasses including repairs so far - I am a little peed off that he kept saying that it was nothing to worry about.
And I am also cross that after approximately 7 months of chasing referrals, I went to the children's centre yesterday, and (politely but firmly) stood there until I got answers/ appointments. But would you believe, he has three appointments now - and all of them are in the very first week of term, his first year at school! Beautiful joined up thinking there. Obviously that is exactly what an ASD child needs - total disruption of a brand new routine!
Anyway. the result of all this faffing about may be that there is a physical reason behind a lot of his sensory issues - if he is albino, then that explains the light sensitivity and the very sensitive skin, and the hypermobility explains the screaming and not walking. I wonder if they will change his DX from ASD, or if he will still tick enough boxes. 
Thanks for reading if you got this far! And breathe