A New Year and Tilly marches on. The New Year is hopefully going to be good for girls with Autism, although I think it will be challenging too. Tilly has led us all on this journey and where she takes us next I can’t say but I hope above all it will be positive. Firstly I would like to introduce myself – My name is Rachel and I am the real Tilly! Mum says the name just popped up when she started to write! Where did that come from!
Tilly’s story is my story, but with one big difference – I wasn’t diagnosed with autism until I was 33 years old. I’m very happy for my mum to write this book and hope that in writing this blog people can read about my life and relate to it and not feel so alone. I’m not going to lie. Life has been really tough with some very low lows but it seems really important that through my telling my story other girls will have better chances than I’ve had.
I’ve enjoyed being a “consultant” on the book and am sort of flattered that I’m the subject of a book. Mum says the book came about when one night she sat down to write an angry letter – not sure who to, just someone out there! – about my life and all the missed opportunities to properly diagnose what was wrong with me. But the letter turned instead into the narrative that would be “Tilly”. I sometimes get very angry with the world about people not knowing what is wrong with me and their inability to make me better. I often fantasize that I have my own unique disorder – Batesian syndrome – and that someone famous will want to study me and can make it all better so I can have a normal life. I often feel my problems are a punishment for me being a bad person and that the whole thing is my fault. On occasion it feels like I let all the bad stuff in and now I can’t control it. I have stated all this and more to people who are supposed to know but until the suggestion of autism came about they all seemed not to have a clue. I don’t blame them, I just think I’m more intelligent than them or something. I feel like I gave them all the pieces but they failed to put them together.