Autism: the battle to raise funds
16/04/2007
Although a child or adult is diagnosed with autism four times an hour in every working day, research projects receive only a fraction of the funding of much rarer conditions such as childhood leukaemia or cystic fibrosis. Autism Speaks is working to change this - and are asking for our readers' help.
Dame Stephanie Shirley, 73, is the UK Chair of Trustees for Autism Speak - and she kindly spoke to the Mature Times about her own personal experience on autism with her son, Giles. A remarkable woman, "Steve" arrived in the UK as an unaccompanied child refugee from Germany in 1939, and set up her own computer technology company in 1962, so becoming a founder member of the British Computer Society.
The knowledge and networking that she could explore at meetings meant that she emphatically broke the ‘glass ceiling’ – not just for herself but for other women, too.
Today, as one of the UK’s most ardent philanthropists, she remains unfaltering in her belief that any mature person possesses rich practical knowledge and understanding which can be used to improve the lives of others.
“My only son Giles was diagnosed with autism, but I managed to remain Chief Executive of my IT company for 25 years. However, the experience led me to wonder how many other professional women were out there who, in the 1960’s, were being forced into an ‘all or nothing’ choice. So I developed a policy of offering home-based work to women with dependants and, I believe, blazed a trail for employers everywhere, making them less hasty to write off mothers as too difficult to keep in post.
"My main interests continue to be autism and making better use of IT in the voluntary sector. Giles’ premature death from epilepsy at the age of 35 accelerated the pace of my charitable work, with Autism Speaks being my latest venture. I am determined to do all I can to lessen the impact of this lifelong brain disorder that affects communication and relationships, and makes it hard for those affected to make sense of the world."
As its very “hands on” Chair, Steve meets many older relatives of children with autism - especially grandparents who often become primary carers and fundraisers.
“Up to 1% of the UK’s school-age children are now being diagnosed with an autistic spectrum disorder,” Steve said. "And it is the grandparents rather than the parents of a child with autism that are best equipped to volunteer their time and talents for the many activities which generate research funds. For a start, they know all about the day-to-day difficulties of parenting an autistic child but do have the time and energy to help us campaign and fundraise. They are also often quite driven in their belief that it is only by determining what autism actually is that we can discover really effective interventions.
"Many grandparents have supported our fundraising events, whilst others have organised their own. Some sell merchandise for us, others simply take our publicity material and make sure that their families and friends, the GP’s surgery and even the church hall noticeboard are kept up to date with our latest activities. Then there are those volunteers who make fantastic ambassadors for us in speaking to local clubs and societies about their own experience of autism.”
After two highly successful national fundraising walks in Windsor Great Park in 2005 and 2006, the first North East Walk for Autism Research is taking place at the internationally famous Alnwick Garden on Sunday May 13 and Steve will be there helping alongside the volunteers.
“It should be a really great day out for families from all over the North, whether affected by autism or not, and as with all our events, it will be the volunteers who make the day a success," Steve said.
“Don’t ever think that, in retirement or at an age when full-time employment is no longer an option, that there isn’t some organisation out there which needs exactly your expertise or simply the acquaintance with the ways of the world that only a more mature person can offer.
“Truly - every life experience can benefit someone, somewhere.”
For more information write to Autism Speaks, North Lea House, 66 Northfield End, Henley-on-Thames, Oxfordshire , RG9 2BE or call 01491 412311 (office hours). Alternatively email: info@autismspeaks.org.uk or visit the link below.