NEW YORK, NY (March 1, 2012)– Autism Speaks, the world’s leading autism advocacy and science organization, today announced that it has awarded $450,000 in grants for two projects focused on developing independent functioning and increased participation in community life for individuals with autism spectrum disorders (ASD). They are the largest Family Services grants funded by Autism Speaks to date, focused on creating specific tools and resources to enhance the lives of adolescents and adults living with autism.
The first grant, for developing a Functional Community-Based Assessment Tool to identify the skills and needs of teens transitioning into adulthood, was awarded to Peter F. Gerhardt, Ed.D., Upper School Director at the McCarton School in New York City, and Paul Wehman, Ph.D., Professor of Physical Medicine and Rehabilitation at Virginia Commonwealth University. The assessment tool will lead to comprehensive transition planning for teams supporting students with ASD. The assessment of student skills will focus on essential community domains, such as transportation, banking and financial management, recreation, home living, self-determination and advocacy, social communication, socialization and peer relationships, health and safety, and personal care and hygiene. The tool will provide rubric-based sets of skills that identify the strengths and needs of students with ASD, leading to comprehensive transition planning for support teams.
The second grant, which will be used to create a Comprehensive Daily Living/Residential Training and Curriculum project for direct support providers, was awarded to the Autistic Global Initiative (AGI), based in San Diego, CA. AGI, a program of the Autism Research Institute, is unique in that it is self-directed and staffed by adults with autism spectrum conditions.The project will provide ASD-specific standards of care, safety and support in the adult services sector.The curriculum and training, including contributions from both AGI staff and other experts in the adult services fields, will address the variety of settings where adults with autism live, including supported, supervised and semi-independent living situations, group homes, assisted living arrangements, farmsteads, and teaching family homes. The curriculum will include topics such as regulation, communication, interpersonal skills, safety, sexuality, harassment, health, transportation, wellness and nutrition. Curriculum developers, led by AGI Director Valerie Paradiz, Ph.D. and AGI Research Manager Janine Collins, MTS, MSW, will work as a team to produce material that addresses all cognitive expressions of autism across the lifespan. This grant was made possible by gifts from the Stephen M. Cassiani Charitable Lead Annuity Trust and the Carol Ann Cassiani Charitable Lead Annuity Trust.
“We are excited that our Family Services Grants Program has expanded into the arena of funding more targeted grants,” said Lisa Goring, Autism Speaks vice president of Family Services. “After successfully funding more than $2 million in Community Grants since 2007, our Family Services Committee is identifying trends and areas of need that will make a meaningful difference within the community. The overarching goal of these two targeted grants is to support young adults and adults with autism in a variety of settings to foster continued growth and independence.”
“This is an exciting opportunity, for both Dr. Wehman and me, to have a broad and positive impact on both transition services and, more importantly, transition outcomes for individuals on the autism spectrum. We are very much looking forward to working with Autism Speaks to design a transition assessment that is focused as much on positive outcomes across the spectrum as it is on process,” said Dr. Gerhardt.
“AGI is thrilled to play a role in developing a curriculum and training for those who support adults on the spectrum. Our curriculum team is comprised of people with autism working in the disability fields, as well as non-autistic colleagues and specialists, several of whom are parents of autistic children. We believe our combined efforts and perspectives will provide a useful resource that supports key aspects of daily living, while ensuring important principles of best practice in self-determination and person-centered planning,” said Dr. Paradiz.
Both of these initiatives offer the potential to significantly improve the lives and outcomes of individuals with autism. The products and outcomes from these projects will be made available to the autism community, and focused dissemination strategies will be developed to further the outreach efforts.
Autism is a general term used to describe a group of complex developmental brain disorders – autism spectrum disorders – caused by a combination of genes and environmental influences. These disorders are characterized, in varying degrees, by social and behavioral challenges, as well as repetitive behaviors. An estimated 1 in 110 children in the U.S. is on the autism spectrum – a 600 percent increase in the past two decades that is only partly explained by improved diagnosis.
About Autism Speaks
Autism Speaks is the world’s leading autism science and advocacy organization. Since its inception in 2005, Autism Speaks has made enormous strides, committing over $173 million to research and developing innovative 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 $316 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, a Grandparent’s Guide to Autism, 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 29 states thus far, with bills pending in an additional 10 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 is a graduate of the College of Holy Cross and the University of Virginia School of Law. He also serves on the board of directors of the Polo Ralph Lauren Corporation, Mission Product, EMI Group Global Ltd., and AMC Networks Inc., and is a Trustee of 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, LuellaBennack 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 from Cold Spring Harbor Laboratory, 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.