[Note: Shared for #AutisticHistory archive purposes. This is NOT An Autistic Ally.]
Autism Speaks’ Autism Genetic Resource Exchange (AGRE) Continues to Support Genetic Research and Findings
Latest Study Using AGRE Data Identifies Combination of Inherited and New Genetic Mutations Linked to Autism Risk
NEW YORK, N.Y. (June 25, 2009) – Autism Speaks’ Autism Genetic Resource Exchange (AGRE) continues to play an integral role in continuing genetic research and new findings in the complex autism inheritance puzzle. In a study published in the June 26 edition of the journal PLoS Genetics, a research team including geneticists from the University of Pennsylvania School of Medicine and The Children’s Hospital of Philadelphia (CHOP) identified 27 different genetic regions where rare gene variations – missing or extra copies of certain genes – were found in children with autism, but not in the healthy controls. The complex combination of multiple genetic duplications and deletions is thought to interfere with gene function, which can disrupt the production of proteins necessary for normal neurological development.
“We are finding that both inherited and new, or de novo, genetic mutations are scattered throughout the genome and it is becoming clear that different combinations of these variations contribute to autism susceptibility,” said Maja Bucan, Ph.D., Professor of Genetics at the University of Pennsylvania School of Medicine and the Chair of the Steering committee for AGRE. “We are grateful to families of children with autism spectrum disorders for their willingness to participate in genetic studies because family-based studies have many advantages. We have learned a lot both from genetic analyses of children with autism as well as analyses of their parents and their unaffected siblings.”
“AGRE has established a partnership between families and researchers that is changing the landscape of autism genetics by leaps and bounds,” said Clara Lajonchere, Ph.D., VP of Clinical Programs and Managing Director of AGRE. “Without the availability of biomaterials and clinical information from thousands of participating families, the field would not be where it is today.”
Genetic samples of 3832 individuals from 912 families with multiple autistic children from the AGRE cohort were compared to genetic samples of 1070 neuro-typical children. Among the study findings were key variants on two novel genes, BZRAP1 and MDGA2, thought to be important in synaptic function and neurological development, respectively. The key variants on these genes were transmitted in some, but not all, of the individuals with Autism Spectrum Disorders, demonstrating that there can be genetic differences seen in individuals in families with autism leading researchers to believe that multiple variants, both common and rare, are acting together to cause autism.
Geraldine Dawson, Ph.D., Chief Science Officer for Autism Speaks, in her former capacity at University of Washington, and Clara Lajonchere, Ph.D., VP of Clinical Programs and Managing Director of AGRE are co-authors of the paper.
The Autism Genetic Resource Exchange (AGRE), a program of Autism Speaks, provided genetic biomaterials and clinical data from families that have more than one family member diagnosed with an Autism Spectrum Disorder. AGRE makes data publicly available to qualified researchers worldwide.
To learn more about the Autism Genetic Resource Exchange (AGRE), please visit www.autismspeaks.org/science/programs/agre/index.php.
Autism is a complex brain 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 150 children in the United States, affecting four times as many boys as girls. The prevalence of autism has increased tenfold in the last decade. The Centers for Disease Control and Prevention have called autism a national public health crisis whose cause and cure remain unknown.
About Autism Speaks
Autism Speaks is the nation’s largest autism science and advocacy organization, 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. Autism Speaks funds more than $30 million each year in new autism research, in addition to supporting the Autism Treatment Network, Autism Genetic Resource Exchange, Autism Clinical Trials Network, Autism Tissue Program and a range of other scientific and medical programs. Notable awareness initiatives include the establishment of the annual United Nations-sanctioned World Autism Awareness Day on April 2 and an award-winning, multi-year national public service advertising campaign with the Ad Council. Autism Speaks’ family services efforts include the Autism Video Glossary, a 100 Day Kit for newly-diagnosed families, a School Community Tool Kit and the distribution of community grants to local service providers. Its government relations department, through its Autism Votes initiative, has played a critical role in securing federal legislation to advance the federal government’s response to autism, and has successfully advocated for insurance reform to require insurers to cover medically-necessary autism therapies. Each year, Autism Speaks Walk Now for Autism fundraising events are held in more than 70 cities across the country, as well as Canada and the United Kingdom. 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 served as vice chairman, General Electric, and chief executive officer of NBC and NBC Universal for more than twenty years. He also serves on the board of directors of the Polo Ralph Lauren Corporation and RAND Corporation. Suzanne Wright has an extensive history of active involvement in community and philanthropic endeavors, mostly directed toward helping children. She serves on the boards of several non-profit organizations and is also Trustee Emeritus of Sarah Lawrence College, her alma mater. 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.
[Note: Autism is NOT a disease, but a neurodevelopmental difference and disability.]
Fact: Vaccines Do Not Cause Autism.