This was the reality Lyn Redwood of the National Autism Association faced when her child was diagnosed with autism. Autism is a developmental brain disorder that affects as many as 1 in 150 children as reported by the Centers for Disease Control. Alterations in health and behavior vary widely from mild to severe, leading to their general classification as Autism Spectrum Disorders. About 10 percent of individuals with ASD develop autism secondary to a known genetic disorder. The cause of ASD is not certain; however, parents of ASD children have been playing a significant role in changing the way experts view the disorder.
"Children are like snowflakes, each one different, each one needing a different biomedical intervention," said Shelley Reynolds of Unlocking Autism. "What makes treating autism difficult is that each combination to unlock each person affected is so unique."
As a result of advocacy efforts, the U.S. Congress provided $7.5 million in appropriations directed to the Department of Defense to initiate the Autism Spectrum Disorder Research Program in 2007. The U.S. Army Medical Research and Materiel Command has been administrating research funding for several specific diseases through the Congressionally Directed Medical Research Programs since 1992.
"The Army Medical Command has a long history of focusing on mitigating the effects of specific diseases in a mission driven manner. Combat conditions have required the Army to seek out innovative rese arch to use new materials, new techniques and treatments, basically to develop new ideas to save lives," said Col. Janet R. Harris, director of CDMRP. "By creating a process where scientists researching the disease can hear the issues of those persons affected by the disease, the scientific community and the advocacy community can partner to find and fund the best research."
The process of translating Congressionally appropriated dollars into meaningful and productive research outcomes began with a Stakeholders Meeting. Nationally recognized scientists and clinicians, who are leaders in the ASD research community, along with leaders of national advocacy organizations were invited to shape the focus of the ASDRP.
"This is a very unique opportunity to allow the scientists and advocates to focus on a common cause, improving the lives of children with autism, to produce research that will lead to making a real difference," said Peter Bell, executive vice president of Autism Speaks, who also has a 14 year old son with ASD. "Parents have been playing a significant advocacy role and changing the way experts view the disorder.
After outlining their hopes for an array of potential research areas in the Stakeholders Meeting, the next step for the ASDRP was to form an Integration Panel. This group of scientists and advocates determines the vision and mission of the ASDRP and how they might craft funding mechanisms to get the research answers to improve the lives of persons with autism.
Reynolds discussed her hopes for practical research with the Integration Panel.
"Families need help," she said. "We need to determine what is causing the sleeping disorders and the GI (gastrointestinal) symptoms that present in the majority of these children. We cannot just give these kids pharmaceutical interventions for their entire lives. We need effective treatments that address the root cause of the problems. With sleep and GI function opera ting optimally, many of the residual behaviors we see in children with autism decrease significantly."
Reynolds speaks from experience. With biomedical and behavior intervention, her son is now a well-functioning 11 year old.
"We were lucky to find what worked best for him," she said. "I have friends who have tried everything, and their children are not progressing and are still presenting with infantile behavior as they enter adolescence."
The ASDRP Integration Panel adopted as its vision statement "Improve the lives of individuals with autism spectrum disorders now." To direct research toward this vision, the Integration Panel’s mission is to "promote innovative research that advances the understanding of autism spectrum disorder and leads to improved treatment outcomes."
"We need to move to a place in research where we are making discrete improvements focused on the urgency of helping our children," said Peter Bell, chair of the Integration Panel. "Our history is that doctors have told us as parents that there is not a lot we can do for our child with autism. Now we know that early diagnosis and intensive interventions, both behavioral and biomedical, can produce better outcomes. We don’t have five to ten years to wait to find out which treatments work with which kids. We need these answers now."
With a mission-driven approach, the ASDRP offer three types of funding opportunities: To encourage new research ideas and bring more investigators into the Field of Autism research. When the funding opportunities are announced next month, investigators currently engaged in autism research, and researchers and clinicians wishing to apply their knowledge to autism, are encouraged to submit proposals. In a few weeks, more details will be available through the CDMRP Web site at http://cdmrp.army.mil. Research proposals will be evaluated using a two-tiered review process with peer and progra mmatic review panels composed of scientists and consumer advocates. Full details about the funding offerings will be available in program announcements expected to be released in May.
"By embracing the community and inviting parents as stakeholders to sit side by side with clinicians and researchers, the Department of Defense Autism Spectrum Disorder Research Program gives me hope that one day soon we will have successful treatment programs for all children with autism and the knowledge to prevent it from ever happening in the first place," Redwood said.
Source:US Department of Defense Congressionally Directed Medical Research Programs
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