Meet Our Community Partners
Autism Science Foundation (New York, NY)
The mission of the Autism Science Foundation (ASF) is to catalyze innovative and impactful autism research by providing strategic funding and other support to established and rising scientists.
In addition to its research grant and fellowship programs, the foundation’s major research initiatives include the Autism Sisters Project, a collaboration with the Seaver Autism Center at Mount Sinai School of Medicine to study the “female protective effect” for autism. ASF also leads the “It Takes Brains” campaign, an ongoing outreach program urging families to register to donate brain tissue to the Autism BrainNet, a network of research institutions that collaborate on groundbreaking brain research.
The organization’s advocacy and education efforts also include producing the autism community’s only annual TED-style talks, featuring insights and ideas from leading researchers and advocates from around the globe.
The Autism Science Foundation adheres to rigorous scientific standards and values. ASF believes that outstanding research is the greatest gift it can offer families and that every research dollar needs to count.
Autism Society of America (Washington, D.C.)
The Autism Society of America has been improving the lives of all affected by autism for over 50 years and envisions a world where individuals and families living with autism are able to maximize their quality of life, are treated with the highest level of dignity and live in a society in which their talents and skills are appreciated and valued. We provide advocacy, education, information and referral, support, and community at national, state and local levels through our strong nationwide network of Affiliates.
Founded in 1965 by Dr. Bernard Rimland, Dr. Ruth Sullivan and many other parents of children with autism, the Autism Society is the leading source of trusted and reliable information about autism. Through its national network, the Autism Society has spearheaded numerous pieces of federal, state and local legislation, including the 2006 Combating Autism Act, the first federal autism-specific law. The Autism Society’s website is one of the most visited websites on autism in the world and our online resource database, Autism Source™, and National Contact Center (1-800-3-AUTISM) provide information and service referrals to thousands of people each year.
Autism Speaks (New York, NY)
Autism Speaks is dedicated to promoting solutions, across the spectrum and throughout the life span, for the needs of individuals with autism and their families. We do this through advocacy and support; increasing understanding and acceptance of people with autism; and advancing research into causes and better interventions for autism spectrum disorder and related conditions.
If you are in need of information or resources, contact our Autism Response Team at 1-888-AUTISM2 (en Español 888-772-9050) or FamilyServices@AutismSpeaks.org
GRASP (New York, NY)
GRASP, the Global and Regional Asperger Syndrome Partnership, is a nonprofit organization committed to supporting the autism community. Since 2003, GRASP has provided much-needed services for adults on the autism spectrum through its Peer-Run Support Program. Building on this framework, GRASP has created programming for parents and families, siblings, women, LGBTQ, clinicians, professionals, educators, and teens and young adults, as well as collaborations with agencies, organizations, school districts and universities, and corporations. In addition, GRASP strives to provide the highest-quality information and referral services, educational workshops and presentations, and best practices for all of its members.
GRASP’s mission is to improve and enrich the lives of individuals on the spectrum and their families through community advocacy and outreach, education, peer supports, programming and services at no cost to its members. It fulfills this mission by offering families and support members the information and assistance they need and allow each individual the chance to lead the most independent and productive life possible.
This section on autism research is designed to help you better understand autism research history, what is known today, and why the SPARK project was launched. We hope this information will help you decide if participation in SPARK is right for you and your family.
RESEARCH: THE BASICS
The study of autism originated in the 1940s with the work of Dr. Leo Kanner in the United States and Dr. Hans Asperger in Austria. At that time, and in the decades that followed, it was suspected that autism might be caused by “poor parenting,” which led to stigma associated with the disorder. However, thanks to years of focused research and scientific advances, autism is now known to be a neurodevelopmental disorder, and it is known that some of its symptoms can be treated.
There are still many theories about what causes autism, but most researchers now believe that both genetic and environmental factors play roles. Learn more about Genetic Analysis here.
Today, the central goals of autism research are to learn more about what causes autism and to develop treatments that can improve the quality of life for people living with the condition. As science continues to shed light on the molecular workings that underpin autism, we will see still more profound progress in our understanding of this condition and, we hope, treatments for those affected.
WHY SPARK IS THE NEXT STEP IN AUTISM RESEARCH
The prevalence of autism has increased significantly over the past two decades. While this increase may be largely attributed to broader diagnostic criteria and an increase in overall awareness of autism, it nonetheless means there has never been a greater need to gain a better understanding of this condition that affects so many.
While considerable advances have occurred in autism research, there is still much we don’t know. For example, recent research has shown that likely hundreds of genes play a role in autism, but not a lot is known about which environmental factors contribute to the development of the condition. The SPARK gene list can be found here. While many different types of treatments are available (e.g., behavioral therapy and medications for some behaviors), there are no approved medications to treat core symptoms of autism.
One of SPARK’s key goals is to enable a new level of research that was not possible previously, by dramatically increasing the number of people available to participate in autism research.
SPARK will enable advances in two major ways. Having genetic samples from 50,000 families for scientists to analyze will enable far deeper insight into the genetic changes that contribute to autism. SPARK families will be available to receive invitations from researchers to participate in other studies, enabling research of all types to get off the ground more quickly.
AUTISM RESEARCHERS NEED YOU!
SPARK works with research partners from all over the world to engage families and adults with autism in research studies. All of the studies are evaluated for scientific merit, and a SPARK scientific committee approves them.
SPARK matches participants with research studies based on characteristics such as age, diagnosis, medical history, location and more. Some of these studies are online, and some are in person.
SPARK does not share any information with researchers until participants give their permission. Participants in SPARK are always in control.