Kennedy Krieger Institute Launches First National Online Autism Registry
The Interactive Autism Network to Accelerate Autism Research by Linking Researchers and Families Nationwide
April 2, 2007 (Baltimore, MD)—Kennedy Krieger Institute today announced the launch of the Interactive Autism Network (IAN) – the first national online autism registry – at www.IANproject.org. Parents are filled with questions about autism, and, unfortunately, researchers are still struggling with many of the same questions. IAN brings these two groups together in a way that’s never been done before, through an online registry, to find answers.
Designed to drive autism research forward more quickly and efficiently, IAN will facilitate the exploration of causes, treatments and the search for a possible cure to this puzzling disorder. The Kennedy Krieger project is spearheaded by the husband and wife research team of Drs. Paul and Kiely Law, physicians by training and parents of a 13-year-old son with autism. The IAN project will link researchers to parents, the people who know the most about their child, in two important ways:
- Data Collection –Parents of children with autism will be engaged online, providing valuable genealogical, environmental and treatment data without having to leave their home or office. By the end of the year, IAN’s goal is to have the largest pool of family-provided data on autism, enabling researchers to explore hypotheses and search for parallels among affected children in ways that have not been previously possible.
- Research Recruitment –IAN will match parents of children with autism with local and national IRB-approved research studies for which they are uniquely qualified. Each year, many autism studies are not completed because scientists cannot find enough qualified participants in a timely manner. By facilitating the process of research recruitment, IAN aims to remove this stumbling block.
“Parents are looking for a more direct way to get involved and speed up autism research, hoping for effective treatments and eventually a cure,” said Dr. Paul Law, Director, Interactive Autism Network at the Kennedy Krieger Institute in Baltimore, Maryland.
“IAN will fill that research gap for parents and researchers, transforming the face of autism research as we know it.”
Among the families who registered during the IAN pilot phase, 80% had never participated in any autism research. The IAN project will utilize the power and reach of the Internet, which is widely available regardless of income, education, race and ethnicity, to significantly increase family participation. In the long-term, this new research approach may impact not only autism research, but how other disease states are studied as well. (Note: Autism is NOT a disease)
To protect participant confidentiality, the data collection and management processes throughout the site are carefully designed to ensure privacy and maintain the highest level of medical and scientific research ethics.
In addition to collecting data and recruiting participants for research, the IAN project hopes to engage the entire autism community – from parents to policy makers to the media – in an online meeting place where they can become more knowledgeable consumers of autism research. This arm of the IAN project provides consumer-friendly, evidence-based information about autism, explains the value of research in general, and gives updates on current and future research studies.
“By linking parents and researchers, the IAN project aims to organize and mobilize autism research efforts in hopes of achieving results similar to the leukemia community,” said Dr. Gary Goldstein, President and CEO of the Kennedy Krieger Institute.
“Thirty years ago, the majority of children with leukemia died. Today, the majority survive because increased participation by a very organized research community led to discoveries of new and better treatments.”
IAN is funded by a grant from Autism Speaks, a non-profit organization dedicated to increasing awareness about the growing autism health crisis and raising funds for critical autism research.
“We are proud to be funding this important initiative and excited about its potential to not only collect critical data, but also connect families and researchers nationwide in order to speed the search for the causes, better treatments and a cure for autism,” said Mark Roithmayr, president of Autism Speaks.
Autism spectrum disorders (ASD) is the nation’s fastest growing developmental disorder, with current incidence rates estimated at 1 in 150 children. This year more children will be diagnosed with autism than AIDS, diabetes and cancer combined, yet profound gaps remain in our understanding of both the causes and cures of the disorder. Continued research and education about developmental disruptions in individuals with ASD is crucial, as early detection and intervention can lead to improved outcomes in individuals with ASD .
ABOUT THE KENNEDY KRIEGER INSTITUTE
Internationally recognized for improving the lives of children and adolescents with disorders and injuries of the brain and spinal cord, the Kennedy Krieger Institute in Baltimore , MD serves more than 12,000 individuals each year through inpatient and outpatient clinics, home and community services and school-based programs. Kennedy Krieger provides a wide range of services for children with developmental concerns mild to severe, and is home to a team of investigators who are contributing to the understanding of how disorders develop while pioneering new interventions and earlier diagnosis. For more information on Kennedy Krieger Institute, visit http://www.kennedykrieger.org/.
ABOUT AUTISM SPEAKS
Autism Speaks is dedicated to increasing awareness of autism spectrum disorders, to funding research into the causes, prevention, treatments and cure for autism, and to advocating for the needs of affected families. It was founded in February 2005 by Suzanne and Bob Wright, the grandparents of a child with autism. Bob Wright is Vice Chairman and Executive Officer, General Electric, and Chairman and CEO , NBC Universal. Autism Speaks has merged with both the National Alliance for Autism Research (NAAR) and Cure Autism Now (CAN), bringing together the nation’s three leading autism advocacy organizations. To learn more about Autism Speaks, please visit www.autismspeaks.org.
Autistic people have fought the inclusion of ABA in therapy for us since before Autism Speaks, and other non-Autistic-led autism organizations, started lobbying legislation to get it covered by insurances and Medicaid.
ABA is a myth originally sold to parents that it would keep their Autistic child out of an institution. Today, parents are told that with early intervention therapy their child will either be less Autistic or no longer Autistic by elementary school, and can be mainstreamed in typical education classes. ABA is very expensive to pay out of pocket. Essentially, Autism Speaks has justified the big price tag up front will offset the overall burden on resources for an Autistic’s lifetime. The recommendation for this therapy is 40 hours a week for children and toddlers.
The original study that showed the success rate of ABA to be at 50% has never been replicated. In fact, the study of ABA by United States Department of Defense was denounced as a failure. Not just once, but multiple times. Simply stated: ABA doesn’t work. In study after repeated study: ABA (conversion therapy) doesn’t work.
What more recent studies do show: Autistics who experienced ABA therapy are at high risk to develop PTSD and other lifelong trauma-related conditions. Historically, the autism organizations promoting ABA as a cure or solution have silenced Autistic advocates’ opposition. ABA is also known as gay conversion therapy.
The ‘cure’ for Autistics not born yet is the prevention of birth.
The ‘cure’ is a choice to terminate a pregnancy based on ‘autism risk.’ The cure is abortion. This is the same ‘cure’ society has for Down Syndrome.
This is eugenics 2021. Instead of killing Autistics and disabled children in gas chambers or ‘mercy killings’ like in Aktion T4, it’ll happen at the doctor’s office, quietly, one Autistic baby at a time. Different approaches yes, but still eugenics and the extinction of an entire minority group of people.
Fact: You can’t cure Autistics from being Autistic.
Fact: You can’t recover an Autistic from being Autistic.
Fact: You can groom an Autistic to mask and hide their traits. Somewhat. … however, this comes at the expense of the Autistic child, promotes Autistic Burnout (this should not be confused with typical burnout, Autistic Burnout can kill Autistics), and places the Autistic child at high risk for PTSD and other lifelong trauma-related conditions.