I've spoken to the geneticist again this week to ask a few more questions that I forgot to get answered during our appointment last week. I think I was a bit overwhelmed by it all and needed some time for it all to sink in. Turns out they want to study B, not because of his rare disorder, but because the researchers used very new technology to find out the results. I'm hoping they might write a paper on him. That would be very exciting.
Also this week have spoken to CAMHS a couple of times regarding B's last appointment about the possible autism diagnosis. I have never believed he has autism, the social communication disorder clinic said it's unlikely to be autism and now CAMHS do not think it's autism. So this new diagnosis has been brilliant to explain why B has autistic-like behaviour. It explains a lot. And explains why he has never been able to tick all the boxes. I feel excited.