I am Mum to Ryan, a 5-year- old with severe autism. I am also chairperson of Autism Support Crawley, a local voluntary parent/carer support group for those with children and adults on the spectrum or with a social communication disorder, with over 250 members, many without a diagnosis.
I also work for Autism Sussex as a parent liaison officer and write a monthly newspaper column ‘Living With Autism.’
Earlier this month singer Susan Boyle revealed that she was diagnosed with Asperger Syndrome.
Like the many other adults with autism who are diagnosed relatively late in life, Susan said that finally getting a diagnosis was a great source of relief, providing an explanation for years of feeling ‘different’.
But there are practical benefits to diagnosis as well – as they should, in theory, allow people to access all the local help and support they need. Help and support that was promised to them by 2009’s Autism Act – England’s first disability specific piece of legislation.
In the four years since the Act, there has been some progress in providing people with autism with what they need but it’s been patchy and many of the some 460,000 adults with autism across England are still waiting.
Susan Boyle’s story has caught the public’s attention and got people talking about autism and the effect that it has on people’s lives. That’s great. But what we need now is for Government to take notice of the fact that too many people are still waiting for the everyday support they need.
That’s why I hope that people will join me in supporting the National Autistic Society’s Push for Action campaign (www.autism.org.uk/push). Together we can work to put the needs of adults with autism as high priority. No one with autism should wait for a diagnosis or for the support they need. We have a chance to make a huge difference to lives across our area. It must not go to waste.
We were lucky to get Ryan diagnosed at the age of two but I know so many families in our area that are desperately fighting ‘the system,’ to get their children/young adults the diagnosis they so crucially need and it breaks my heart, so please help us to help them!!
Maria Box, Crawley