I'm Victoria and I joined the AAN in November last year. I live in Hurstpierpoint, with my husband Ged and our 3 children, Joseph, Daisy and Archie. Joseph is 7 and he has autism. I've been asked by the AAN to say a bit about what I've been up to since November, it would be great to hear your experiences as well - it's inspiring to think there's a group of us out there working away for autism.
Since becoming an ambassador, I have been campaigning on the Government's proposed reform to the Special Educational Needs and Disability system - change is potentially good, but we need to make sure the Government gets it right for people whose lives are affected by autism.
At the end of last year, I finally got to meet my MP at his surgery. I had been in contact with his office on the SEND reforms since the summer, but it took until December for us to meet. My MP is a minister and it was initially hard to get his attention. Tenacity proved to be the key, as did trying to forge some kind of relationship with his office (they got to know me quite well in the end!), although I admit, it was sometimes hard to balance persistance with politeness...!
Before the meeting I took some advice from the AAN and got myself prepared - I'd never met an MP before and I was nervous and keen to make sure I did a good job. The best bit of advice I got was to write a short note which, would detail all the issues I wanted to raise and the points I wanted my MP to action after we had met. I took this note with me and used it to refer back to and keep the meeting on track. I also emailed a copy to my MP's secretary before the meeting, she printed it out and he was able to read in a little about the issues I wanted to discuss - it also gave him something to keep in hard copy to remember me by! For moral support but also to add impact, I brought a very good friend of mine to the meeting. Her family life is very similar to mine and together we were able to emphasise both the significance and prevalence of our common experience.
The meeting went well. It seems to me that the Green Paper provides a great opportunity to improve the provision of services for local people affected by autism and it turns out that my MP has had lots of other constituents asking for his help and has become very sympathetic. I told him about my experiences, how complicated life can be for Joseph and how we have struggled for diagnosis and to access services. I also outlined the main Green Paper proposals and how the reforms could, in my opinion, best serve the interests of those affected by autism. I was amazed by his interest and knowledge, we had a good chat about the problems we face and he listened well. At the end of our meeting, he agreed to coordinate a round table of parents and families, health care and education professionals, in the first of what we're hoping will be a series of 'autism summits', which will take place at Arundel Town Hall on Friday 29 June.
The idea of the 'autism summit' is to bring together all kinds of people who have a connection with autism - mental health teams, social workers, teachers, Children's Services, people with autism, parents and charities - for round table discussion and information sharing. We hope that as a result of these meetings, my MP will be able to feed back some really useful information to Government, as it progresses the Green Paper. West Sussex is also a Green Paper Pathfinder area, so it's going to be a really useful forum to find out how the Pathfinder Team has got on. We also hope that these sessions will help improve local services for those affected by autism, by highlighting what is being done and where gaps remain. It will also be a chance for parents to share experiences. The 'autism summit' will include 5 speakers - representatives from social services, mental health services, the charity Autism Sussex and members of the West Sussex County Council Pathfinder team. I'll be there representing the families and the NAS and I think someone from the NAS will try to make it down. There'll be a Q&A session after the speakers have finished and I'm hoping to see lots of people chipping in from our local NAS branch in Worthing.
After a difficult start, I've become really impressed with the commitment that my MP has shown to the issues I raised and, about a year after I first contacted his office, I feel like something might finally result. I hope the summit is a success - I've never done anything like this before so if any of you have advice or ideas, they'd be very gratefully recieved! Fingers crossed for 29 June. I'll keep you posted."