January has been rather hectic with autism stuff. I attended two meetings, one by Cambridgeshire County Council and one by an organisation called “Speak up spectrum” which is supported by Voice Ability. The Council meeting was quite intense and had important people from around the county. The main thrust was getting people into work and sustaining work. I feel in some ways they were missing the point. Many autistic people struggle to get through a day without having to work as well. I would love to work but find it hard to cope with the basics of life without having a job too. I just feel a broader outlook from the powers that be might be better to improve quality of life for some of us. At “Speak up spectrum” we too touched on employment but also discussed our campaign to find good social spaces like bowling or the pub. Our leader had also been to London to discuss autism with MPs etc so we had feedback from there. As you can imagine I found this all rather stressful but I feel it is important in our quest for better understanding for autism (our “speak up spectrum” leader is a woman).
Mum went to a conference on female autism in London called “the Big Shout”. She found it very useful especially listening to some girls from Limpsfield school. She discovered, which may seem strange at such a late date, that it is typical for women and girls on the spectrum to suffer from overwhelming chronic anxiety and to self harm and have suicidal ideas like me. Now I’ve had chronic anxiety all my life and my parents have tried everything but hearing it enabled both my mother and me to accept it and feel “normal”. Over the years my parents have realised that my anxiety cannot be helped by reassurance and ordinary ways of coping. They and my carers praise me for the good things I do in a day which makes me feel I have achieved something. I also reward myself every few months with a cd or two.
I challenged myself the other day by going out for Sunday lunch. I had roast beef, it was very nice but very challenging. I get so worried I will choke and vomit, it is really scary. I will also go out when my niece comes for half term. I do find children a bit of a nightmare. I have no clue what to do with them but I’m going with her to a golf lesson and bowling so hopefully all will be ok. She’s very lively!!! I’m still on the golf course most weeks trying desperately to hit a good shot. Sometimes I do, but others end up in the lake. I do enjoy it but I get so frightened beforehand that my bowels won’t hold out or I’ll have a panic attack in the middle of the course. Anyway enough about my golf woes. I struggle on and Tilly goes from strength to strength.