How does a child vanish in plain sight? Our grandson, Christian, used to watch trucks drive by and name them all — “fire truck”, “mail truck” — until, suddenly, he had no more words. We used to go for walks on the beach until he could no longer tolerate the feeling of sand on his feet. Warm smiles were gone replaced by eyes that would not connect with mine.
The boy who had brought so much joy and had been hitting all his developmental milestones was slipping away. At first, doctors told us it was because he had a new baby brother, or because boys are slower to develop. Our concern turned into panic as Christian became increasingly sick and disconnected.
Eventually, we learned the real answer when Christian was diagnosed with autism. We were stunned. Despite having spent decades in the media business, we knew little about the disorder, and although we had access to the best medical care, we were at a loss about what to do next. Christian’s doctors told us, “goodbye and good luck.”
As we struggled to understand autism and help our grandson, our personal quest became a public crusade.
Suddenly, our family became part of the approximately 67 million people around the world who are affected by autism. That’s one percent of the world’s population, including those here in Dubai
What is autism? Autism is a complex neurological disorder that impacts communication, behavior and social relationships. It is part of a group of disorders known as autism spectrum disorders. For the person with autism, the world is a place of anxiety. It is a great swirl of people, places and events that make little, if any, sense. A person with autism can be terribly isolated from people around him or her, a stranger to the social skills we take for granted, of how to relate to other people or read their emotions.
Because it's a spectrum disorder, a person with autism can have anything from mild symptoms, such as a literal approach to language, making it impossible to follow the subtleties of conversation, to being unable to speak, living in a state of isolation and agitation.
Some people with autism can lead independent lives, others may never be able to care for themselves.
We founded Autism Speaks in the US in 2005 to change the future for all who struggle with autism. A cornerstone of our mission is to raise awareness. We knew that once autism entered public consciousness, it would generate the funding necessary to drive research into the unanswered questions about what causes it and how we might alleviate its effects.
Since our inception, we have made great progress in increasing awareness and have raised more than $110 million for scientific research. With other organizations, we achieved passage of the Combating Autism Act 2006, a nearly $1 billion federal bill that allocates funds directly for research and services. In fact we're proud to be working closely with the Prince Salman bin Sultan Center for Disabilities in Riyadh. We are looking forward to our upcoming visit to the Kingdom.
Awareness about autism and increased support for early intervention are the keys to changing this. As awareness grows among policymakers, doctors, caregivers, educators and families, so will compassion for people and families living with autism. With increased awareness, more funding will come to support research into the causes, more effective treatments and better diagnostic methods.
We know it is possible to lighten the burdens of autism for individuals and families living with the disorder. But hope and believe progress can only come through public awareness, swift and substantial legislative action and more research into the mysteries of one of the most complex childhood disorders of our time.
Autism is now only the third medical disorder after AIDS and diabetes which is recognized by the United Nations. Around the world today, people will be marking World Autism Awareness Day. It's time for the world to listen.
For information and resources on autism to help everyone from teachers and medical professionals to families cope with autism, please visit www.autismspeaks.org or WorldAutismAwarenessDay.org.
— Autism Speaks was founded in February 2005 by Suzanne and Bob Wright, the grandparents of the child with autism. Bob Wright is senior adviser at Lee Equity Partners and served as vice chairman, General Electric, and chief executive officer of NBC and NBC Universal for more than twenty years. Suzanne Wright has an extensive history of active involvement in community and philanthropic endeavors, mostly directed toward helping children.
