Autism Speaks 2011 Accomplishments

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2 Autism Speaks Co founders Suzanne and Bob Wright and board member Billy Mann joined President Obama at the signing of the Combating Autism Reauthorization Act (CARA) of 2011 into law, authorizing an additional $693 million over the next three years in autism epidemiology, science and services. Autism Speaks has committed over $173 million into autism research since its inception. Autism Speaks released its Transition Tool Kit, a guide for families on the journey from adolescence to adulthood. Launched in February, 2,700 personalized hard copies of the kit have been sent out and it has been downloaded over 12,000 times. Autism Speaks Light It Up Blue initiative to celebrate World Autism Awareness Day on April 2, 2011 saw over 2000 buildings and homes participating, including such notable landmarks as the Empire State Building, 30 Rockefeller Center, Niagara Falls and the CN Tower in Canada, Christ the Redeemer Statue in Brazil and the Sydney Opera House in Australia. Home Depot s Light It Up Blue light bulbs and lanterns helped families everywhere go blue. SCIENCE: Autism Speaks provided funding for the first study to screen a general population for autism to better estimate the prevalence. The results showed that 1 in 38 South Korean children are affected by ASD. The Baby Siblings Research Consortium released a report showing that autism recurs in families at a much higher rate than previously realized: If one or more children in a family is diagnosed with autism, the chances that a baby sibling will develop the disorder is around 1 in 5, more than double previous estimates. A game changing California Autism Twins Study, funded by Autism Speaks and using Autism Genetic Resource Exchange (AGRE) data, revealed that non genetic influences, or environmental factors, shared by twins but not different age siblings play a far greater role in the development of autism than previously thought. Autism Speaks funded a landmark study that found elevated levels of inflammatory markers in the blood of children with a history of regressive ASD. Increasing levels of inflammation were associated with more impaired communication and repetitive behaviors. The findings suggest that ongoing inflammation may be linked to some forms of autism. Autism Speaks launched an historic collaboration with Beijing Genomics Institute to perform whole genome sequencing on more than 2,000 families participating in AGRE, with additional samples from families recruited by newly established AGRE China. Current technology allows scientist to analyze only 1 2% of the genome. By decoding the whole 2 P age

3 genome of individuals affected by autism, we will have an opportunity to learn much more about the genetic risk factors for autism and accelerate the search for answers. RESOURCES FOR FAMILIES: Autism Speaks Autism Response Team provided support to individuals with autism and their families through: 7,200 s; 5,160 phone calls; 5,000 readers during Live Chats (started in June); and 3,100 readers during Office Hours (started in September). Four new centers have been added to Autism Speaks Autism Treatment Network (ATN), expanding it to 17 clinical centers across North America. 4,000 children are enrolled in the ATN patient registry and over 22,000 families are served annually. In addition, five ATN tool kits for families and physicians were released: medications, blood work, dental practitioners, sleep and visual supports. A series of Family Support Tool Kits was launched to provide support and address the needs of parents, grandparents, siblings and friends of families with a child with autism. These kits have been downloaded more than 5,000 times. A new Health and Wellness web portal provides information about living a healthy lifestyle for individuals on the autism spectrum and their families. The kit provides families with information and resources pertaining to fitness, nutrition and sleep. Autism Speaks launched its Safety Tool Kit, a compliment of the Autism Safety Project website. This portion of the site provides information about teaching safety skills in each room of the home provided by The Ohio State University. The kit also includes important information about identifying and addressing abuse. A new Treatment Section was added to the Autism Video Glossary library with the inclusion of more than 100 video clips from actual therapy sessions illustrating 22 autism treatments. Autism Speaks teamed with Hewlett Packard and the Doug Flutie Jr. Foundation to launch Hacking Autism, an initiative that took ideas from the autism community and engaged volunteer developers to create apps and other technologies that give those with autism a voice. GLOBAL REACH: The Global Autism Public Health Bangladesh conference on autism and developmental disabilities resulted in Dhaka Declaration to the United Nations and the development of the South Asian Autism Network. Autism Speaks launched GAPH Saudi Arabia, which included a donation of $10.5 million from the SABIC, a Saudi oil industry conglomerate, to support autism research and service development. 3 P age

4 Autism Speaks co organized a UN panel on autism as part of the 4th Annual UN sanctioned World Autism Awareness Day, with speakers including UN Secretary General Ban Ki Moon. GOVERNMENT RELATIONS: A majority of states (29) enacted autism insurance reform laws thanks to Autism Speaks advocacy efforts during 2011, including California, New York, Virginia, West Virginia, Arkansas and Rhode Island. Seven of 10 Americans now live in a state with laws requiring health insurance plans to cover the diagnosis and treatment of ASD. Autism Speaks joined with other leading disability rights groups on Capitol Hill to mark the introduction of the Achieving a Better Life Experience (ABLE) Act of 2011 in both houses of Congress. This bipartisan legislation would allow individuals with autism and other disabilities to utilize health savings accounts for education, housing, transportation, and other needs without jeopardizing their eligibility for Medicaid, SSI, and other means tested programs. The Caring for Military Kids with Autism Act was introduced in the U.S. House of Representatives with the endorsement of Autism Speaks. This bipartisan legislation would clarify that TRICARE, the health care system for military dependents, covers behavioral health treatment, including applied behavior analysis. Current TRICARE policy denies these benefits to retirees and other non active duty personnel. AWARENESS/SOCIAL MEDIA: 4 P age Autism Speaks award winning Ad Council campaign hit a new milestone in 2011 reaching $300 million in donated media. In addition, two new ads were launched featuring international fashion designer Tommy Hilfiger and NASCAR champion Jamie McMurray, both of whom have affected family members. In 2011, Autism Speaks was named one of America s Greatest Brands by the American Brands Council. Autism Speaks previously received the honor in Over 30 first spouses and Ministers of Health from around the world gathered at Autism Speaks fourth annual World Focus on Autism held at the McCarton School in NYC. Mrs. Ban Soon taek, wife of the U.N. Secretary General and the distinguished guests discussed the global crisis of autism and shared ways to work together to find answers and increase service capacity. In 2011, Autism Speaks completely redesigned and re launched AutismSpeaks.org resulting in a 25% increase in traffic. In addition, the Autism Speaks Facebook page neared 1 million fans and on Twitter nearly 45,000 followers. Two new social media concepts were launched: live web chats with experts on current issues related to autism and Office Hours, which gives individuals with autism and their

5 families an opportunity to get real time information and guidance from Autism Response Team (ART) experts. There are nearly 50 Autism Speaks U chapters across the country. Fraternity Theta Delta Chi named Autism Speaks as their national philanthropic organization, joining sorority Alpha Xi Delta, who named Autism Speaks as their national philanthropic organization in During April, over 150 colleges and universities lit their campuses blue and hosted fundraising events benefitting Autism Speaks. FUNDRAISING: Autism Speaks signature event, Walk Now for Autism Speaks, took place in over 85 communities across the U.S. and Canada. Nearly 400,000 people joined together with family, friends, schools, political figures and corporations to raise approximately $30 million. In 2011, major gift donors contributed $8 million to research, fellowships, family services programs and general support. Million dollar donors included the Allerton Foundation s grant for scientific research and a Mel Karmazin Foundation grant. Toys R Us, Inc. s fifth annual nationwide in store fundraising campaign to benefit Autism Speaks raised more than $3 million in its stores across the U.S. and Canada. National fashion retailer T.J. Maxx s month long fundraising and awareness program at 800 stores raised nearly $1.3 million. In only its second year, Dollar General tripled its in store campaign total to $1.2 million. In addition, the Home Depot raised $250,000 from the sale of blue light bulbs and lanterns in all their U.S. stores for the second annual Light It Up Blue Campaign. Across the nation, athletes determined to support families struggling with autism took part in Team Up with Autism Speaks by participating in marathons, triathlons, cycling, and other endurance events to help Autism Speaks continue to fund our vital mission. In 2011, Team Up participants raised over $1 million. 5 P age