The Simons Foundation Autism Research Initiative (SFARI) today announced the launch of SPARK, an online research initiative designed to become the largest autism study ever undertaken in the United States. SPARK will collect information and DNA for genetic analysis from 50,000 individuals with autism — and their families — to advance our understanding of the condition’s causes and accelerate the development of new treatments and supports.
Autism is already known to have a strong genetic component. To date, approximately 50 genes have been identified that almost certainly play a role in autism, and researchers estimate that an additional 300 or more are involved. By studying these genes, associated biological mechanisms and how genetics interact with environmental factors, researchers can better understand the condition’s causes and link them to the spectrum of symptoms, skills and challenges of those affected.
“Knowledge is power, and SPARK was created because we simply haven’t learned enough about the genetics and other possible causes of autism,” says Wendy Chung, SPARK’s principal investigator and director of clinical research at SFARI. “SPARK will help researchers make new discoveries that will ultimately lead to the development of new supports and treatments to improve the lives of people living with challenges. Together, we can ‘spark’ a movement in autism research.”
SPARK aims to speed up autism research by inviting participants from this large, diverse autism community, including individuals of both sexes and all ages, backgrounds, races, geographic locations and socioeconomic situations with a professional diagnosis of autism. The initiative catalyzes research by creating long-term access to a large number of study participants for whom detailed genomic, medical and behavioral information will be available. SPARK will connect participants to researchers, offering them the unique opportunity to impact the future of autism research by joining any of the multiple studies offered through SPARK. SPARK will also take feedback from individuals with autism and their parents to develop a robust research agenda that is meaningful for these families.
This new initiative is funded and centrally coordinated by SFARI. A total of 21 university-affiliated clinical sites and numerous national and local autism community organizations across the U.S. are partnering with SFARI to help recruit participants and spread the word about this landmark study. De-identified genetic and phenotypic data will be made available to any qualified researcher throughout the duration of the project, and researchers will have the opportunity to contact participants for potential enrollment in their research and clinical studies.
“A major goal of SPARK is to accelerate clinical research in autism by providing a large resource to the entire research community,” says Pamela Feliciano, scientific director of SPARK and senior scientist at SFARI. “All qualified researchers will be able to access SPARK genomic, medical and behavioral data and recruit for their studies from SPARK as soon as possible.”
Anyone interested in learning more about SPARK or in participating can visit www.SPARKforAutism.org.
Alison Singer, M.B.A.
President, Autism Science Foundation
SFARI Investigator, SPARK Scientific & Community Advisory Board
Alison Singer, is cofounder and president of the Autism Science Foundation. As the mother of a child with autism and legal guardian of her adult brother with autism, she is a natural advocate.
Since 2007, Singer has served on the national Interagency Autism Coordinating Committee, which is charged with writing a strategic plan to guide federal spending for autism research. Singer also serves on the executive board of the Yale Child Study Center, on the external advisory board of the Marcus Autism Center at Emory University, as chair of the associates committee at the Seaver Autism Center at Mount Sinai Hospital in New York and on the external advisory board of the CDC’s Center for Birth Defects and Developmental Disabilities. Singer chairs . Singer chairs the International Society for Autism Research public relations committee and is a member of the International Meeting for Autism Research program committee and community advisory committee. In 2012, the American Academy of Pediatrics named her an “Autism Champion.”
More with Spark!
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.