Transforming Health Care through Innovative and Impactful Research

Two of my forefathers fought in the American Revolution. My mother's father flew planes over France during World War II. My own father served in the Vietnam War as a Captain in the Air Force stationed in Taichung, Taiwan. I am grateful to the men and women in our armed forces who work to preserve our great country. I'm grateful to be a part of a history that seeks to bring democracy and freedom to other countries and strive to honor the sacrifices of our military families past and present with the work that I do daily. They have given me a country where I can utilize my voice, so I do.

For the last 16 years, I have had the pleasure of working with thousands of amazing autism advocates all across the country to bring about change in our community. My son, Liam, was diagnosed with autism in April 1998. His prognosis was grim. We were told he would likely never speak again and would require institutionalization. After a few weeks of absorbing the news and learning more about autism, I was shocked at how little was being done to help those living with autism. A few months later, Nancy Cale, Jeana Smith and I co-founded Unlocking Autism for the purpose of bringing the issues of autism to the forefront of national discussion. We hopped on planes and headed to Washington, DC to be the difference we wanted to see in the world.

In 2001, we organized The Power of One Conference in Washington, DC, a meeting for everyone concerned about the growing epidemic of autism to be heard. We believed that the voices of a unified people matter. We believed that with focused effort, citizens can transform their own world by identifying a problem and bringing a workable solution to their government representatives. Some problems are large enough that solving them requires a partnership. We still believe that today. I've witnessed it time and again in what has now developed into a career with Autism Speaks serving as the Director of Grassroots Development. With structure and focus, a trained militia of advocates can spark a revolution, shift paradigms, and improve the lives of those living with autism now.

The Autism Research Program (ARP), as part of the Congressionally Directed Medical Research Programs, is a critical component of our community's forward movement, primarily because it gives voice to those who are entrenched in the world of autism every day in setting the vision, mission, and recommending what research should be funded. As a member of the ARP Integration Panel, the last seven years has been nothing short of an amazing experience and an experiment for our community. I've learned more about the human body and blood, guts, pathogens, and body parts than I ever really wanted to know! But the most incredible thing that I have learned is that our voices and life experiences matter, even in the world of scientific research.

By folding people affected by Autism Spectrum Disorder into the process, our scientists, clinicians, and researchers have an improved understanding that the work that they do, or don't do, and the research they fund, or don't fund, will have a direct impact on the life and health of an 18-year-old boy or a 7-year-old girl or a 59-year-old man or 32-year-old woman living with autism.

It becomes personal, not only for our advocates, but for our scientific community as well, and when it becomes personal, change will come more quickly because then the two groups have improved understanding and are invested in each other. By listening to each other with an open dialogue, we are able to develop a bond and commitment to work together more symbiotically, ultimately producing results impacting the "now" factor more quickly.

Today, Liam is a happy, healthy 18-year-old man. He is mainstreamed in a regular high school setting with a modified curriculum. He is working on his Eagle Scout Rank in a Boy Scout troop where he has made significant friendships. He has worked at McDonald's for the last two years and successfully saved a couple of thousand dollars. He has goals of becoming a millionaire and having a family one day with three children of his own - two boys and a girl. He has his eyes on a cute girl in his class and is learning what he needs to do to ask her out on a date. He can hold deep conversations about what he thinks, believes, and feels. He has a faith in God and was baptized last spring, which was celebrated by our entire church. Everyone has a purpose in this life. I'm so proud of the achievements Liam has made and the inspiration and hope he has brought to so many people he may never meet. He has taught me patience, love, perseverance, and to never, ever give up. He has taught me to live in the future I want to see and not the past.

People ask me all the time what it was that helped him get to where he is today. It bothers me that 16 years later, I can't definitively point to any one therapy or treatment that we utilized to help him, much less roll out a treatment protocol for a child that is diagnosed today. All across America, parents are working hard to help their children with autism be all that they can be. They are conducting experiments in their own kitchens and witnessing results as their children's health improves and the symptoms of autism begin to dissipate. We must harness the knowledge found in these homes because those living with autism have become experts themselves in a way. Then we must take their knowledge and apply scientific method so that we can develop treatment protocols that have an easy delivery mechanism through medical professionals. Structures like those of the CDMRP will help us reach those translational goals more quickly simply by providing the opportunity for dialogue.

Revolution always brings about a change. The structure of the CDMRP is revolutionary in all the medical programs it hosts and is shifting the paradigm by allowing citizens to express themselves on equal footing with those seeking cures and treatments. As a parent, provider, researcher, clinician, or especially a person with autism, your voice matters and you can make a difference.