NEW YORK, NY (March 18, 2010) – Autism Speaks, the nation's largest autism science and advocacy organization, today announced the launch of Version 2.0 of the 100 Day Kit, a personalized resource designed to assist families in getting through the critical time following an autism diagnosis. It has also created a separate Asperger Syndrome and High Functioning Autism Tool Kit.
The original 100 Day Kit includes information about autism and dealing with the news of a diagnosis. The personalized kit lists local service providers, support groups, recreational activities, sources of legal information, conferences, local autism organizations and information about the local chapter of Autism Speaks. It provides insight into getting services for a newly diagnosed child and explains various available treatment options. A week-by-week action plan helps walk a family through the steps they need to take to ensure that they are on the right track. The kit also includes a safety plan and a list of recommended books and informational websites.
“When a child is diagnosed with autism, his or her parents are often left feeling overwhelmed and confused about what to do next and where to turn for help,” said Peter Bell, Autism Speaks executive vice president for programs and services. “The 100 Day Kit is a valuable tool for these families and helps make the first few weeks and months after diagnosis a little less daunting.”
Since its release in February of 2008, the 100 Day Kit has been downloaded tens of thousands of times and sent to more than 6,000 families of recently-diagnosed children in all 50 states, as well as the District of Columbia and Canada. Four months after receiving the kit, these families were invited to participate in a short survey to provide feedback based on their experiences with the kit. The response was overwhelmingly positive. It was evident through these responses that the kit was highly successful in serving its purpose of calming the fears and easing the stress of families of recently-diagnosed children.
The Autism Speaks Family Services staff, in conjunction with a professional advisory committee comprised of parents of children with autism and professionals, has produced Version 2.0 of the 100 Day Kit based on this feedback from families, new scientific information, and updated valuable resources. In addition, a separate Asperger Syndrome and High Functioning Autism Tool Kit has been created to provide more specific information to families affected by Asperger Syndrome and high functioning autism.
In the past two years alone, the science surrounding autism, its causes, and its potential treatments, has changed significantly. Autism Speaks Chief Science Officer Geraldine Dawson, Ph.D. has updated the kit to include the newest scientific information. In addition, based on the feedback from families, Version 2.0 of the 100 Day Kit includes more information for school-aged children, along with an expanded list of new resources, and suggested books and websites. The Asperger Syndrome and High Functioning Autism Tool Kit will be sent out separately to families of children with this diagnosis. It contains information, tips, and resources specific to Asperger Syndrome and high functioning autism, and was created to more effectively inform and assist these families.
“We are very excited about the release of Version 2.0 of the 100 Day Kit,” said Lisa Goring, Autism Speaks director of family services. “We want families to know that they are not alone, and that there is hope. We are here to help them. The new information provided in Version 2.0, as well as in the Asperger Syndrome and High Functioning Autism Tool Kit, will make this resource even more effective and successful in assisting a larger population of families affected by autism.” (Read Lisa Goring's blog post about the 100 Day Kit)
"This kit has been such a lifesaver for the families we see,” said Karen Grant, Psy.D., of the Oregon Health & Science University Autism Program. “It gives them a roadmap at a time when everything seems overwhelming and scary. This is a must have for all families with a child on the autism spectrum."
The 100 Day Kit Version 2.0 is available for download at www.autismspeaks.org/community/family_services/100_day_kit.php.
A personalized version of the new kit can be sent to families of children who have been diagnosed in the past six months by calling the Autism Response Team at 888-AUTISM2 (888-288-4762). The hard copy of the kit consists of pertinent information for families, specific to the age and location of the child.
About Autism
Autism is a complex neurobiological 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 110 children in the United States, affecting four times as many boys as girls. The prevalence of autism increased 57 percent from 2002 to 2006. 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 North America's largest autism science and advocacy organization. Since its inception only five short years ago, Autism Speaks has made enormous strides, committing over $142.5 million to research and developing innovative new resources for families through 2014. 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 also supports the Autism Treatment Network, 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 and an award-winning “Learn the Signs” campaign with the Ad Council which has received over $210 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 community grant program and much more. 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. 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 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 boards of the Polo Ralph Lauren Corporation, RAND Corporation and the New York Presbyterian Hospital. 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. Suzanne has received numerous awards such as the CHILD Magazine Children's Champions Award, Luella Bennack Volunteer Award, Spirit of Achievement award by the Albert Einstein College of Medicine's National Women's Division and the Weizmann Institute of Science. In 2008, the Wrights were named to the Time 100 list of the most influential people in the world for their commitment to global autism advocacy.
