Autism Speaks, About Us

Since its inception, Autism Speaks has committed an unprecedented $128 million in new research funding through 2014 to uncover the cause(s), prevention, treatments and cure for autism, making it the nation's top private funder of autism research.

Autism Speaks' public service announcement (PSA) campaign, produced with the Ad Council, has now generated over $160 million in donated media and led to a nationwide 43 percentage point increase in autism awareness by the general public. Additionally, new PSAs featuring recording artist and mother of a son with autism, Toni Braxton, opened to much critical acclaim, garnering over 10 million impressions on the first day they were launched.

Autism Speaks launched the 100 Day Kit for Newly Diagnosed Families. This resource, which is available in both English and Spanish, gives families information on the best possible use of the first 100 days following the diagnosis of autism. The kit contains information and advice collected from trusted and respected experts on autism as well as from parents of children with autism. To date, over 3,000 kits have been personalized and distributed, and 5,200 additional kits have been downloaded from our website.

Autism Speaks successfully passed autism insurance legislation in five states and is working with 23 other states to pass new insurance bills that provide important treatment coverage for families affected by autism.

Autism Speaks provided critical support to the State of Qatar in creation of the first ever World Autism Awareness Day (WAAD) sanctioned by the United Nations and to be celebrated on April 2nd in perpetuity. The inaugural WAAD was celebrated in 2008 in over 40 countries on six continents and brought the message of autism awareness to millions of people around the world.

Science

Autism Speaks-funded researchers reported major scientific findings in the areas of etiology, biology, diagnosis and treatment. Among the key findings were:

Using the Autism Speaks' Autism Genetic Resource Exchange (AGRE), researchers from the Boston-based Autism Consortium reported in the New England Journal of Medicine that a submicroscopic deletion or duplication on chromosome 16 is strongly associated with autism spectrum disorders (ASD). Individuals with this genetic variation experience a hundredfold risk of developing autism in contrast to those without it.

An Autism Speaks-funded collaboration with families from the Middle East led researchers in Boston to discover that several new autism risk genes are involved in the proper functioning of synapses (connections between nerve cells), which are important for learning and memory. Other Autism-Speaks funded researchers independently implicated another synapse-related protein, CNTNAP2, as an autism susceptibility gene. These convergent findings reinforce the notion that abnormalities at the synapse contribute to autism's core symptoms.

In two different Autism Speaks-funded studies with important therapeutic implications, an FDA-approved drug Rapamycin reversed the hallmark signs of the neurodevelopmental disorder tuberous sclerosis complex (TSC) in a mouse model. Because over half of the TSC affected individuals also have autism, these results give hope that novel drug therapies will expand the treatment options for autism and highlight the utility of biological research using model systems.

Autism Speaks partnered with the UK's Wellcome Trust to fund an exciting new research project by researchers in Scotland that is using mouse models to develop treatments aimed at reversing the deficits of Rett Syndrome, one of the ASDs.

A study funded by Autism Speaks and conducted by researchers at Johns Hopkins University replicated earlier findings of a potential early biomarker for autism, finding that abnormal antibody proteins were present more often in the blood of mothers who had given birth to children diagnosed with autism than those who had not. In the on-going search for risk-markers of autism, Autism Speaks continues to fund a wide range of research on early detection of autism based on both behavioral and biological markers.

An Autism Speaks-funded treatment intervention study successfully reduced anxiety symptoms in a small group of children with autism spectrum disorder. The researchers from UCLA modified a cognitive behavioral treatment so that it could address the special needs of children with autism. This study is one of the first successful adaptations of an evidence-based treatment previously used for typically-developing children and adolescents.

Individuals with autism often suffer from sleep problems, such as difficulty
falling asleep and nighttime wakening. Such sleep problems can affect daytime behavior, including cognitive and emotional functioning, and represent a serious challenge to families. Autism Speaks-funded researchers published a treatment study demonstrating the effectiveness of melatonin in treating sleep problems in children with autism.

Inspired by anecdotal and case reports of successful outcomes, Autism Speaks funded the first controlled study of the efficacy of neurofeedback therapy in autism, a type of treatment used by some families for their affected children. Results from this study suggested that individuals receiving neurofeedback training on a specific type of brain wave show mild behavioral improvements along with changes in patterns of electrophysiological (brain wave) activity.

Autism Speaks launched the Global Autism Public Health Initiative (GAPH), an ambitious international advocacy effort whose goals are to increase public and professional awareness of autism spectrum disorders worldwide, to enhance research expertise and international collaboration through training of autism researchers – with a focus on epidemiology, screening and early diagnosis, and treatment – and to improve service delivery by providing training to providers in early diagnosis and intervention.

The seventh International Meeting for Autism Research (IMFAR), sponsored by Autism Speaks, was held in London. Over 1,100 researchers, physicians, and specialists from around the world attended and presented on current scientific findings.

The Autism Treatment Network (ATN) received a $12 million grant from the Health Resources and Services Administration (HRSA) to serve as the Autism Intervention Research Network for Physical Health that will develop protocols for research targeting nutrition and sleep, two areas of critical interest to individuals with autism, and expand the development of practice guidelines.

Autism Speaks announced The Pan American Autism Awareness and Training Initiative (PAAATI), an international collaboration designed to help raise awareness and, develop research expertise, and enhance service delivery for ASD across North, South, and Central America. PAAATI aims to increase awareness, encourage scientific collaboration and build research and services capacity.

The Interactive Autism Network (IAN), the Autism Speaks-funded online registry and social network for the autism community at the Kennedy Krieger Institute, has registered over 28,500 family members, including over 10,000 children diagnosed with ASD. In addition to reporting on data collected from the families at international conferences, the IAN team continues to participate in original research projects as well as assist in subject recruitment for over 140 studies to date. IAN also provides IAN Community, a comprehensive online library and meeting place focused on ASD research.

Awareness

Autism Speaks launched a new social networking site. Members create their own personalized profile, start a blog, join forums on range of autism-related topics, and post photos and videos. To date, there are over 5000 members.

As part of its efforts to create a compassionate community for all those affected by autism, Autism Speaks collaborated with writers from television shows, “The Guiding Light,” “Days of Our Lives” and “General Hospital: Night Shift,” to develop story lines focusing on the challenges facing individuals and families with autism.

On April 2, 2008, the first World Autism Awareness Day, CNN partnered with Autism Speaks to provide all-day coverage of the day's events and featured interviews with Autism Speaks co-founder Suzanne Wright.

Autism Speaks was awarded the Bronze Effie in the PSA category for increasing awareness of autism in the general public by 43 percent via the Ad Council campaign. The Autism Speaks website – autismspeaks.org – received E-Healthcare's highest honor, the Platinum award, in the “Best Health Content: Consumer Disease Focused Site” category for the value of its content.

Family Services

Forty-two Family Services Community Grants totaling $837,000 were awarded this year to expand services for people with autism. $341,000 will go to expand recreational opportunities for individuals of all ages and functioning levels; $297,000 will fund training and education to expand the field of service providers; $162,000 will go towards providing opportunities for employment, recreation and college experiences for young adults and adults; and $37,000 will provide augmentative communication libraries to several communities.

Autism Speaks, in partnership with the Ad Council and the CDC, launched the Talking to Parents About Autism educational toolkit. The kit, which includes a training DVD and Early Childhood Milestone Maps ,promotes early intervention and encourages educators to speak to a child's parents if they suspect a developmental delay.

The Autism Speaks Family Services Resource Guide has quickly become the one of the largest databases of autism resources in the country with 25,000 entries and resources from all 50 states. The Resource Guide provides the opportunity for users to search for resources by state or by zip code. The information is now categorized by age range in order to better meet the needs of our families.

Autism Speaks launched the School Community Tool Kit during the back-to-school period in August to assist members of the school community – teachers, administrators, aides, office staff, bus drivers, nurses, custodians, peers and parents – with information to understand and support students with autism. The kit provides information about autism – the features, challenges and strengths – as well as some tools and strategies that may result in more positive interactions for all members of a school community. The School Community Tool Kit is available on the Autism Speaks website and has been downloaded over 4,200 times to date.

In order to better meet the needs of families requesting information on adult issues, Autism Speaks released a DVD series from the “Aging with Autism: Defining the Future” conference. The DVDs provide information on topics ranging from housing and transition issues, to sexuality and employment. Students and clients from Nassau Suffolk Services for Autism and The Martin C. Barell School in Commack, N.Y. are handling the reproduction of the DVDs as part of an employment training effort.

AutismCares, a consortium of organizations including Autism Speaks, united to support individuals with autism and their families during natural disasters and other catastrophic life events. In 2008 AutismCares distributed 132 family support awards for a maximum of $1,500 to families in crisis to help with food, clothing and housing needs. In addition, a total of 103 families affected by natural disasters – Hurricanes Ike and Gustav, Midwest Floods, and Wildfires in Southern California were awarded support for evacuation and housing costs.

Government Relations

Autism was a hot topic during the 2008 Presidential election. Autism was highlighted at the Democratic and Republican National Conventions, both candidates spoke about autism in their debates, and posted a full autism policy statement on their websites. Autism Speaks helped to educate all the Presidential candidates on the importance of autism as a national public health priority, resulting in position statements from multiple candidates.

Autism Speaks launched AutismVotes.org, a website dedicated to advocacy for autism legislation. The site houses a webpage for each federal bill Autism Speaks has endorsed, as well as a page for every state. AutismVotes.org provides a home-base for updated information and “take action” opportunities that engage the community in the political process.

Autism Speaks Government Relations efforts focused its federal agenda on Senator Chris Dodd's (D-CT) introduction of the Disability Savings Act of 2008 (S. 2741). This legislation is designed to encourage individuals with autism and other disabilities and their families to save for disability-related expenses, effectively creating disability savings accounts that are exempt from federal taxation if certain criteria are met.

Autism Speaks worked to continue funding the Combating Autism Act for Fiscal Year 2009 ($162 million) and the Department of Defense Autism Spectrum Disorders Research Program ($8.0 million).

Fundraising Events

Autism Speaks Walk Now for Autism events, with national sponsor Toys“R”Us and media sponsor Parade magazine, raised $29 million in 70 walks throughout the U.S., as well as in the United Kingdom and Canada. Over 325,000 people participated in walks.

Autism Speaks hosted numerous fundraising events including the Concert for Autism Speaks featuring Lionel Richie at the Mar-a-Lago Club; the 10th Anniversary New York Celebrity Golf Tournament at Winged Foot Golf Club; Autism Speaks to Wall Street: 2nd Annual Celebrity Chef Gala featuring executive chefs from around the country as well as Harry Connick, Jr.; sporting events; motorcycle rides and more; raising over $8 million.

Autism Speaks ran in-store fundraising events as a part of April's autism awareness month with Toys“R”Us, TJ Maxx, Modell's and Build-A-Bear Workshop, raising over $2.7 million. General Motors raised $1 million by inviting the general public to click-through an online test drive of the new Chevy Malibu.

More than 200 individuals, foundations, and corporations contributed a gift of $5,000 or more unrelated to Walk or Special Events which accounted for $20.2 million to fund mission based activities. New services were added for Major Gift donors, including enhanced reporting on restricted gifts. In addition, Autism Speaks launched a Planned Giving program through which individuals can receive special tax benefits.