Just back from a National Autistic Society meeting in Chacewater. It was long, interesting, sad and a bit hopeful. It confirmed what most people with autism and their families already know. Most of the problems that people with autism encounter are not of their own making – it is the lack of understanding from others.
No-one knows how many people with autism there are. Few local authorities have specialist diagnostic facilities and most services are fragmented, difficult to access and inadequate. This is a story that has come back to me so many times since I first became aware of the problem through Debi Evans, founder of Jelibean, utterly committed campaigner and lifeline to many desperate families.
Armand Toms, the portfolio holder for Adult Social Care was at the meeting and I could see he was taking notes of the problems people were flagging up. I hope this will lead to some improvements.
It would be good to see Cornwall taking hold of this issue and really trying to raise awareness, improve training and even change the culture. I’m due to meet the new Chair of Children Education and Families Scrutiny Committee on Thursday to talk more about this and again to suggest the committee listen to some people with autism (tried with Chris Ridgers, who basically said ‘not now, later’ but then was moved on to be in the Council’s Cabinet).
It was a long evening tonight with lots of information and questions. I thought one of the best comments was from a young man on the autistic spectrum who raised the problem of job interviews. He could not get to grips with why he would be asked to tell the interviewer about a bad quality of his and why he was advised to say something that did not sound bad in reply. Instead of playing this intricate game he wondered why he could not just say a few things about himself and then explain why and how he could do the job. I was tempted to put up my hand and say I’m neurotypical and I don’t understand that either. One of the speakers told us how they had worked with BT on interview techniques for people on the spectrum and the company had decided that it was good practice for everyone so there is some hope we can learn, I suppose.
In general though, it is the same old story. The people who are in the majority, or who have power set the standard and reject people who don’t fit into it. Then wonder why those people get angry or unhappy – or both.
I am sure it can be changed. It will take strong campaigning, funds and the political will. In the meantime, an awful lot of people face a daily struggle to get the very basic help they need.