[Note: Shared for #AutisticHistory archive purposes. This is NOT An Autistic Ally.]
Autism Speaks Autism Treatment Network Receives $12 Million AIR-P Grant
Funding Supports Continued Research, Development of Best Practices, Tool Kits For Families and Physicians, and Clinical Training
NEW YORK, N.Y. (September 26, 2011) – The Autism Speaks Autism Treatment Network (ATN), has received a $12 million federal grant to continue to serve as the Autism Intervention Research Network on Physical Health (AIR-P).
TheAIR-P supports clinical research, development of best-practice guidelines, tool kits for families and physicians, and clinician training activities. “This agreement provides the ATN with a jump start in developing the kinds of research programs that will provide answers to questions that parents have about the health care for their children with autism,” says lead AIR-P investigator James Perrin, M.D., director of Autism Speaks’ Clinical Coordinating Center and of MassGeneral Hospital for Children’s Division of General Pediatrics, and professor of pediatrics at Harvard Medical School. “It also gives us the opportunity to develop and disseminate best health care practices for children and their families.”
Studies that will be conducted with this major grant include a clinical trial of interventions to reduce or avoid the excessive weight gain associated with some of the medications used to treat autism spectrum disorders (ASD), and a clinical trial of interventions to treat sleep problems in children with ASD and iron deficiency. The funding will also support the development of additional research within the ATN, in areas related to medical and physical health issues. AIR-P is also developing its Autism Collaborative. This empirical approach measures whether sites are actually implementing the model and determining whether it’s working, and provides a level of rigor that is critical for the field.
“Families are faced with many choices in creating a treatment plan for their child or loved one,” explained ATN Medical Director Daniel Coury, M.D. “This Autism Collaborative shows that we’re putting data behind what we say and do in creating best practices for comprehensive care of individuals with ASD.”
The funding represents the ATN’s second major AIR-P grant from the U.S. Health Resources and Services Administration Maternal and Child Health Bureau, for a total of $24 million since 2008. In those first three years, AIR-P funding supported 11 clinical research projects. In addition to research, the AIR-P and ATN support tool kit development and family outreach, as well as webinars, conference presentations, training and mentoring for medical professionals.
In 2011, ATN and AIR-P published the first of its Tool kits to provide guidance to families and providers. “Taking the Work Out of Blood Work: Helping Your Child with an Autism Spectrum Disorder – A Parent’s Guide,” and the companionprovider’s guideprovides clear guidance for families and medical providers to help make necessary medical procedures less stressful. The ATN and AIR-P also produced the Medication Decision Aid Tool Kit to help families understand more of the choices and considerations involved in considering medications in collaboration with their child’s doctor. These Tool kits are free of charge and available to download from http://www.autismspeaks.org/science/resources-programs/autism-treatment-network/tools-you-can-use.
Autism is a complex neurobiological disorder that inhibits a person’s ability to communicate and develop social relationships, and is often accompanied by behavioral challenges. Autism spectrum disorders are diagnosed in one in 110 children in the United States, and one in 70 boys. The prevalence of autism has increased 600 percent in the past two decades. The Centers for Disease Control and Prevention have called autism a national public health crisis whose cause and cure remain unknown.
About the Autism Speaks Autism Treatment Network
The Autism Speaks’ Autism Treatment Network (ATN) is the nation’s first network of hospitals and physicians dedicated to developing a model of comprehensive medical care for children and adolescents with autism. The ATN, currently a network of 17 sites in North America, offers families care from doctors and other health professionals highly experienced in helping individuals with autism and providing treatment for associated conditions such as gastrointestinal and sleep disorders. ATN doctors are dedicated to finding better ways to manage the health of children with autism and sharing their increasing knowledge across the wider medical community.
The ATN provides direct patient care through a comprehensive, coordinated care model at its network of collaborative clinical teams providing ongoing care to children and families. The ATN works to develop and share best practices to improvecare, developing standards and guidelines for evaluating and treating physical conditions associated with autism, and to sharing these standards with a wide variety of other clinical programs, utilizing its common protocol for a multidisciplinary and comprehensive evaluation of children with autism. Some of these best practices are integrated into tool kits modeled after the highly successful Autism Speaks 100 Day Kit.
These free resources include practical guidance to parents and practitioners on making blood draws and medical procedures less stressful and a Medication Decision Aid, and can be found at www.autismspeaks.org/science/resources-programs/autism-treatment-network/tools-you-can-use In addition, the ATN maintains a patient registry, a database of anonymous clinical data about participating families and patients that can be used to evaluate and track patient care in network facilities. ATN clinicians also conduct clinical research projects directly aimed at improving children’s health and healthcare, serving as the Autism Intervention Network for Physical Health (AIR-P) for the Health Resources and Services Administration’s (HRSA) Combating Autism Act Initiatives.
About Autism Speaks
Autism Speaks is North America’s largest autism science and advocacy organization. Since its inception in 2005, Autism Speaks has made enormous strides, committing over $160 million to research and developing innovative new resources for families. The organization is dedicated to funding research into the causes, prevention, treatments and a cure for autism; increasing awareness of autism spectrum disorders; and advocating for the needs of individuals with autism and their families. In addition to funding research, Autism Speaks has created resources and programs including the Autism Speaks Autism Treatment Network, Autism Speaks Autism Genetic Resource Exchange and several other scientific and clinical programs. Notable awareness initiatives include the establishment of the annual United Nations-sanctioned World Autism Awareness Day on April 2, which Autism Speaks celebrates through its Light It Up Blue initiative. Also, Autism Speaks’ award-winning “Learn the Signs” campaign with the Ad Council has received over $286 million in donated media. Autism Speaks’ family resources include the Autism Video Glossary, a 100 Day Kit for newly-diagnosed families, a School Community Tool Kit and a community grant program. Autism Speaks has played a critical role in securing federal legislation to advance the government’s response to autism, and has successfully advocated for insurance reform to cover behavioral treatments in 27 states thus far, with bills pending in an additional 12 states. Each year Walk Now for Autism Speaks events are held in more than 80 cities across North America. To learn more about Autism Speaks, please visit www.autismspeaks.org.
About the Co-Founders
Autism Speaks was founded in February 2005 by Suzanne and Bob Wright, the grandparents of a child with autism. Bob Wright is Senior Advisor at Lee Equity Partners and Chairman and CEO of the Palm Beach Civic Association. He served as Vice Chairman of General Electric; and as the Chief Executive Officer of NBC and NBC Universal for more than twenty years. He also serves on the boards of the Polo Ralph Lauren Corporation, Mission Product, LLC, EMI Group Global Ltd and the New York Presbyterian Hospital. Suzanne Wright is a Trustee Emeritus of Sarah Lawrence College, her alma mater. Suzanne has received numerous awards, the Women of Distinction Award from Palm Beach Atlantic University, the CHILD Magazine Children’s Champions Award, Luella Bennack Volunteer Award, Spirit of Achievement award by the Albert Einstein College of Medicine’s National Women’s Division and The Women of Vision Award from the Weizmann Institute of Science. In 2008, the Wrights were named to the Time 100 Heroes and Pioneers category, a list of the most influential people in the world, for their commitment to global autism advocacy. They have also received the first ever Double Helix Award for Corporate Leadership, the NYU Child Advocacy Award, the Castle Connolly National Health Leadership Award and the American Ireland Fund Humanitarian Award. In the past couple of years the Wrights have received honorary doctorate degrees from St. John’s University, St. Joseph’s University and UMass Medical School – they delivered respective commencement addresses at the first two of these schools. The Wrights are the first married couple to be bestowed such an honor in St. John’s history.