Adapted from testimony presented to the House Committee on Oversight & Government Reform on 11/29/12
More than seven years have passed since my wife, Suzanne, and I founded Autism Speaks. During that time, we have seen the prevalence of autism in America nearly double -- from 1 in 166 children in 2005 to 1 in 88 today, including 1 of every 54 boys. There is no getting around the facts: autism has become an epidemic.
Autism Speaks began as an idea to give a voice to millions of struggling families around the nation and has materialized into the world's leading autism science and advocacy organization. We are incredibly proud of what we have accomplished, but we cannot go it alone. We need a strong federal partner.
Behind the numbers are real families who struggle every day, families who cut back or stop working altogether to care for their children or who experience bankruptcy or severe financial problems. And there are American taxpayers who must confront the $137 billion per year cost of autism. The status quo isn't working. It is time we commit to a comprehensive national strategy for autism.
First, we must continue to fund basic science, but should do so more smartly. The federal commitment to autism research through the Combating Autism Act has been an important first step in understanding the causes of autism. Research into environmental factors no longer is neglected and important work is underway with vaccine safety. What has been lacking, though, is a policy that directs funding according to a strategic plan, measures meaningful progress, operates with a sense of urgency, and assures accountability. We must expect results that improve the lives of people with autism. Through a smarter investment in basic research we can unlock the door not only to autism, but a variety of brain disorders.
Second, we must commit to diagnosing children with autism, regardless of background, no later than 18 months of age. Today, the average age of diagnosis is five years old. That is too late. In addition, research shows that minority children go to the doctor many more times before receiving a diagnosis and receive a diagnosis at an even older age. Such delays are intolerable.
Third, we have to develop and make available effective medicines and treatments. Too often, scientific discoveries gather dust on laboratory shelves or are entombed in the pages of academic journals. We need to speed to market products that improve the lives of people with autism. For our part, Autism Speaks has established a not-for-profit affiliate, Delivering Scientific Innovation for Autism (DELSIA), to help do this work. From Washington, we are looking for the National Center for Advancing Translational Sciences (NCATS) to play a key role in fostering collaboration between public and private efforts at real world solutions.
Fourth, we must recognize and address the disparities in access to proven behavioral health treatments. Autism is a treatable disorder. We have long known the benefits of behavioral interventions that use the methods of applied behavior analysis (ABA). Yet today families across the country continue to fight for ABA benefits, negotiating a complex maze of state and federal laws and often unfair insurance company practices. In Washington, we are treated to the spectacle of federal employees gaining access to ABA if they are civilians, but denied the same access if they serve in the military. Government agencies work at cross purposes and our military families are stuck with the short end of the stick. Even wounded warriors who retire because of combat-related injuries cannot get ABA treatment for their children. This can easily be fixed and it can be done by this Congress. Getting help for any child, let alone the child of a parent who has honorably served our country, should not be so difficult.
Fifth and finally, we need to address the needs of adults with autism. Young adults with autism face real challenges in the areas of continuing education, employment, housing and community integration. The majority of adults with autism are unemployed or underemployed, a tragic waste of potential. Hiring people with autism is smart business -- just ask Walgreens or any of the other national employers who have made the investment in our community. People with autism follow the rules and pay attention to details. Give them the support they need and they will succeed.
Like all Americans, adults with autism should be able to choose where they live, with whom they live, and how they live. But the great demand for housing among people with developmental disabilities and the lack of appropriate support services often forces individuals and families to decide whether to develop their own housing or wait indefinitely for their adult child with autism to move out of the family home. A broad range of housing and support options must be made available to meet the needs of people with autism. And they need the financial support that could be provided through tax-advantaged Section 529 accounts. A bipartisan majority of the House and 40 senators are cosponsoring the ABLE act, which would create these accounts.
If the list of what must be accomplished is long, it is because the stakes are very high. On a personal scale, there is this harsh reality: ten years ago, even five years ago, many people reading this would have known autism only from what they read in the newspaper or saw on television. Today, they are the parents or relatives of affected children. Autism has changed their lives, and it continues to change the lives of millions of Americans. We must face up to the crisis.