Author Steve Silberman painted a portrait of our organization and mission in the Los Angeles Times that may reflect his point of view but is a disservice to the millions of people who have both supported and relied on Autism Speaks over the last ten years. In fairness to these people, and to the countless volunteers and champions who have worked so hard to improve the lives of those affected by autism, it is important to set the record straight.
Chuck Saftler, an Autism Speaks national board member based in Los Angeles and father of a child with autism, put it well: “Without unity there is no voice. That does not mean that we cannot have a diversity of ideas and voices within the community, all of which are valid and need equal respect. Those who are least severely affected may just need an openness and understanding of the character traits that make them unique. Those who are more impacted by autism, like my son, may need therapies and hopefully a medical breakthrough that will come through scientific funding. And those who dream of being parents one day deserve to know their children will have the best opportunity to thrive in society without the challenges that are created by autism spectrum disorder.”
For many, autism is a whole-body disorder: One-third of people with autism also have a seizure disorder, half suffer serious digestive complications, 49 percent wander, and more than 30 percent are non-verbal. Since 2005, the prevalence of autism has doubled, and there are now an estimated 3.5 million people in the United States, and 70 million in the world, living with autism.
We have invested more than $560 million in private funding into our mission, the majority of that in research. We exceed the standards of all charity ratings agencies and are partners with corporate leaders, sports leagues, other non-profit groups and service organizations to leverage every dollar we raise and invest.
While research takes time, there are millions of families who need support now. We have fought for insurance coverage for autism treatments and services, which on average can cost a family $60,000 a year. Today, in 42 states, it is mandatory for insurance companies to cover autism treatments. That is progress for every person on the spectrum.
In partnership with other autism advocacy organizations, we led the effort in Washington, D.C. for passage of the Combating Autism Act, the federal funding vehicle for autism research. This legislation, renewed twice since 2008, has provided more than $3 billion in funding from the National Institutes of Health.
In 2014, Autism Speaks, along with other disability groups, led the successful effort to pass the Achieving a Better Life Experience Act (ABLE), which will allow the 58 million families affected by a disability, not just autism, to set up tax-preferred savings accounts – much like 529 college-savings accounts.
Last year alone, specially trained staffers answered 47,500 emails and phone calls seeking autism information and resources. Guided by sound research and best practices, our Autism Treatment Network is a collaboration of 14 specialty centers across North America that provide families with state of the art, multidisciplinary health care for children and teens.
Autism Speaks offers more than 40 free tool kits addressing needs across the entire lifespan – everyday concerns from medical, vision and dental visits to behavioral challenges, nutritional issues and sleep disturbances. Our 100-Day Kit for Newly Diagnosed Families has been downloaded 150,000 times and translated into seven languages. There are also several tool kits specifically for adults, including those who are newly-diagnosed. We are extremely proud of our work with adults with autism and it is a focus of our mission. We have granted more than $2.25 million in funding for adult programming, and to date we have funded more than $1.2 million to 57 organizations to expand services for adults with autism. We have also in just two years funded nearly $550,000 to 23 postsecondary institutions serving young adults with autism through the Brian and Patricia Kelly Postsecondary Scholarship fund.
While the challenges and abilities of those living with autism vary, we know that each year there are 50,000 young adults who, at 22, age out of school-based services. Parents call this “the autism cliff.” There are few job opportunities, transition supports or independent housing options for those who want and need them. So we are working to change that. Over the past two years, Autism Speaks has held 28 town halls across the country focused on housing and employment. We are also helping employers tap into the talents and abilities of adults on the spectrum with TheSpectrumCareers.com (one of the lead developers is a young man with autism), to match job seekers to employers who have open positions.
Wandering is a true crisis for our community and often leads to drowning. Through the generosity of our supporters, who are parents of children on the spectrum, Autism Speaks is funding more than $381,000 in water safety grants, and providing other grants for first-responder training and wearable tracking devices.
Raising awareness remains a focus for Autism Speaks. With awareness come understanding, acceptance and opportunities to help. More than 500,000 people, many on the autism spectrum, join our walks each year to connect with other families, find resources and raise money that benefits their communities.
Since Autism Speaks’ inception, awareness of autism has grown 49 percent in the U.S. among families with young children. We have formed partnerships in more than 70 countries to provide training and resources to professionals, parents and communities.
As a spectrum condition, the needs, priorities and voices of people living with autism are diverse. We aim to include, respect and support this entire community in any way we can. There are hundreds of volunteers, full-time staff, board committee members and advisors on the spectrum who contribute in these efforts. Awareness and acceptance work hand-in-hand; unity in our cause will only make us stronger.
And so we’ll continue to raise funds and fight every single day to help all of our families live healthier, safer, more fulfilled lives.
President, Autism Speaks