When It Comes to Autism, Everyone Can Advocate, Everyone Can Help | Commentary
Everyone is an advocate. Everyone can make a difference.
These are words we live by at Autism Speaks, and they’ve never been more important. That’s true whether you’re a volunteer, parent, friend or loved one of someone with autism, or on the autism spectrum yourself.
One in 68 American children and 1 in 42 boys currently live with autism. This prevalence makes it the fastest-growing developmental disability in the U.S. Yet research and support services don’t begin to address the unmet needs of our community.
That’s why Autism Speaks is thinking big, acting boldly and engaging anyone and everyone willing to pitch in.
Last month, we announced a collaboration with Google on a historic $50 million autism research project. The Ten Thousand Genomes project is the culmination of 15 years of work and represents the ideal intersection of science, business and philanthropy — an important milestone that could lead to breakthroughs in the causes and subtypes of autism, and better diagnosis and treatment.
Today, we’re launching the Autism Champions Initiative, a new state-of-the-art online platform that will help our community’s advocates take action like never before. It’s an opportunity for our champions to not only educate and engage, but also to inspire key legislators to join us in calling for a national strategy to address the needs of people affected by autism.
It’s a “one-stop-shop” for advocacy. With one simple click, our champions can call, write, tweet, or Facebook message key legislators anytime, from anywhere, to share their stories and show their support for state and federal legislative efforts aimed at addressing autism.
This is an important step forward for our community. Especially right now, as our nation’s leaders consider signature legislation that funds research and sets the federal agenda for autism.
It’s called the Autism CARES Act — bipartisan legislation introduced by Reps. Christopher H. Smith, R-N.J., and Mike Doyle, D-Pa., and Sens. Robert Menendez, D-N.J., and Michael B. Enzi, R-Wyo., to reauthorize the Combating Autism Act of 2006.
The Senate Health, Education, Labor and Pensions Committee approved the reauthorization by a voice vote Wednesday. We urge Congress to pass it as soon as possible.
Since the CAA was enacted, the National Institutes of Health, along with Autism Speaks and other organizations, have better coordinated and focused autism research.
We’ve been able to create a research ecosystem in which private and federal tax dollars are better leveraged and bring more scientists into the fold. This has resulted in scientific advances in identifying the causes of autism, diagnosing and treating it earlier, and providing better therapies and services.
More can and needs to be done. That’s why Autism Speaks continues to work with elected officials from both sides of the aisle to improve the law for generations to come.
A critical next step is to enhance our understanding of the needs of adults on the autism spectrum. Five hundred thousand young adults on the spectrum will age out of school-based services over the next decade and we — our government and society — are ill-equipped to address the needs of this population. A national strategy around employment, housing and community integration is essential.
The Autism CARES Act places a new focus on the needs of adults with autism by requiring a review of transition issues faced by adolescents aging out of the school system to adulthood and includes new accountability provisions to ensure federal dollars are spent wisely — issues of common concern across the disability community.
That’s why we’re working with the American Academy of Pediatrics, the Association of University Centers on Disabilities and other groups to highlight the impact the Autism CARES Act will have, not only on individuals affected by autism, but on the disability community as a whole.
This federal effort is backed by a powerful army of grass-roots advocates and volunteers across the country.
Individuals affected by autism, their mothers, fathers, neighbors and friends come to us from all walks of life. We listen to them and empower them to take action to address autism. They meet with legislators, organize their neighborhoods and tell their stories in Washington and in state capitols across the country, to ensure that every family affected by autism has the access and resources it needs to care for its loved ones. They are the single best champions of our cause and they inspire us every day.
They were also the inspiration for the Autism Champions Initiative. As social media continues to transform the way people connect, engage, and communicate with their elected leaders, we too must transform and make it easier for our advocates to advocate – for themselves and for their loved ones.
The Autism Champions Initiative is one more way we’re making sure that everyone can advocate, and that everyone can make a difference.
Liz Feld is the president of Autism Speaks, the world’s leading autism awareness, science and advocacy organization.