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Autism Speaks 2012 Form 990: General Information and Q&A

Where did our funding come from?

Most of the organization’s revenue, 99.9% was raised through contributions and grants received from our many U.S. donors – individuals, families, corporations, and foundations – that, combined, contributed in excess of $53 million in 2012. Our field activities in the U.S. raised almost $31 million, 59% of all contributions. Corporate partnerships raised more than $8 million, our major donors raised $5.5 million and our national special events raised almost $4 million. These revenue figures (and expenses below) vary somewhat from our audited financial statements. The audit consolidates all financial activities for Autism Speaks including financial transactions of Autism Speaks Canada, Delivering Scientific Innovation to Autism (DELSIA) and Advancing Futures for Adults with Autism (AFAA). The IRS Form 990 must exclude the transactions related to Autism Speaks Canada and AFAA.

Where did my money go?

As shown in the chart below, seventy-eight percent of every dollar raised went directly to fund Autism Speaks’ program services composed of its four core mission areas: science, awareness, family services and advocacy.

In 2012, Autism Speaks’ Administrative and Fundraising Rate (AFR) increased to 32%. This can be attributed to investments made in fundraising, resulting in the revenue shortfall in Q4 of 2012.

In 2013, changes have been implemented to stabilize and increase revenue. Autism Speaks’ 2013 budget calls for a reasonable increase in revenue through expanding corporate funding and major gifts.

Below are just a few of our 2012 accomplishments. (For a more complete recap of our achievements, Autism Speaks’ 2012 Annual Report, including our fully audited financial statements, is available at

  • Launched the 10k Autism Genome Project. Autism Speaks is making rapid progress toward the historic whole-genome sequencing of 10,000 individuals in families affected by autism. Already, preliminary analysis of the first 200 genomes is providing information with clear usefulness in the clinical management of autism. In the future, this unprecedented body of information promises to guide the development of precision medicines based on an individual’s genetic profile.
  • Discovered a biomarker for detecting autism. Researchers funded by Autism Speaks identified the first autism-risk biomarker detectable before the appearance of symptoms. Through brain imaging, the researchers found clear distinctions in the development of the brain’s white-matter tracks by 6 months of age in babies who later developed autism.
  • Delivering Scientific Innovation to Autism (DELSIA). Autism Speaks recognizes that the goal of our science is to ensure that breakthroughs are developed into products, services and therapies that can transform lives. Our newly launched affiliate DELSIA is designed to serve as a catalyst that accelerates private investment in product development. As a venture-philanthropy arm of Autism Speaks, DELSIA complements our science mission by identifying and supporting companies able to develop the products and services our community needs.
  • Transformed medical care for children with autism. In 2012, physicians with the Autism Speaks Autism Treatment Network (Autism Speaks ATN) developed the first clinically tested guidelines for treating medical conditions associated with autism. The guidelines were published in a special supplement to Pediatrics, the journal of the American Academy of Pediatrics. Physicians can now use these guidelines to access and treat autism-associated medical conditions such as GI problems, sleep disorders, attention deficit and hyperactivity disorder. The Autism Speaks ATN is a groundbreaking medical network that brings together physicians, researchers and families at 17 sites across the United States and Canada. Each center provides comprehensive, high-quality care by teams of healthcare professionals who understand autism and excel at treating its associated medical conditions.
  • Also in 2012, the Autism Speaks ATN published five tool kits for families and practitioners including:
    • Parents’ Guide to Applied Behavior Analysis
    • Introduction to Behavioral Treatments
    • Sleep Strategies Guide
    • Treating Children with Autism Spectrum Disorders: A Tool Kit for Dental Professionals

Autism Speaks also focuses on awareness, family services and advocacy.

  • PSA Campaign. Autism Speaks’ award-winning “Learn the Signs” campaign with the Ad Council has generated nearly $376 million in donated media since its inception.
  • Nearly 3000 landmarks, buildings and homes in more than 600 cities participated in Autism Speaks’ annual Light It Up Blue campaign on World Autism Awareness Day. Awareness of the growing autism global health crisis continues to skyrocket.
  • Grants. In 2012, Autism Speaks’ Family Services department distributed over $600,000 to our community through various grant programs. In addition, Autism Speaks’ AutismCares program continued to provide funds to financially disadvantaged families around the country including providing 830 iPads. AutismCares also provided much needed funding during times of crises or unplanned hardships. A total of $120,000 was distributed to 300 families with autism affected by Hurricane Sandy.
  • Outreach. The Autism Speaks Autism Response Team continued to provide support for families of individuals with autism. The team responded to close to 20,000 requests for information and resources via phone calls and emails. Local staff and volunteers hosted free workshops and presentations, and distributed free tool kits to over 500 schools and companies in their communities.
  • Resources. Autism Speaks added new resources for families and individuals with autism in 2012, including the Combating Bullying web portal that provides families and professionals with tools to help them prevent and respond to concerns in their community, the Challenging Behaviors Tool Kit and Version 2.0 of the popular School Community Tool Kit.
  • Adult Services. Autism Speaks hosted a two-day employment think tank in 2012 that focused on the role of adults with autism in the workforce and the needs of the current labor market. Participants included individuals with autism and their family members, business leaders, small business owners, service providers and academic researchers. In addition, Autism Speaks created the Housing and Residential Supports Tool Kit, as well as a new section on that contains resources related to residential services for young adults and adults with autism.
  • Spearheaded Insurance Reform. During 2012, three states – Michigan, Alaska and Delaware – enacted insurance reform laws thanks to Autism Speaks and community advocacy efforts, raising the total to 32 states which represent 75 percent of the nation’s population. Four states – Vermont, Louisiana, Virginia and Rhode Island – took action to strengthen their existing laws.
  • Advocated for Military Families. Autism Speaks worked with military families to rally support in Congress for changes to TRICARE, the Department of Defense insurance program, to provide military dependents better access to Applied Behavior Analysis. Following a standing room only Congressional briefing, the House and Senate agreed to create a one-year pilot program which provides significantly expanded benefits.

What is the best way to understand Autism Speaks' accomplishments and finances?

Autism Speaks' Annual Report, including annual audited financial statements, presents a comprehensive overview of our organization and is available here in PDF format. (Requires Adobe Acrobat Reader 8.0 or higher: download here). Form 990 is an annual tax return filed by non-profit organizations. Presentation of information on Form 990, which is dictated by IRS regulations, is not always clear or user-friendly.

What are our program ratios?

Since our first 990 filing, we have exceeded the Better Business Bureaus (BBB) standard of 65% for our program ratio. Due to the recession the BBB decided to allow charities, on a selected basis, up to a 10 percentage point deviation, lowering the standard in some cases to 55%. We didn't need it – our program spending ratio in 2012 is 71% in 2012 up from 67% in 2009. In 2012, for every dollar donated to Autism Speaks, 78 cents went to fund programs and services to support autism research, science programs, awareness, family services and government advocacy.

Why do the special events look like they are generating minimal profit in the 990 tax form?

A “Special Event” is defined for IRS purposes as a fundraising event that has an attendance fee. The donor pays to attend and receives something of value in return. Under IRS rules, a donor's payment to attend a special event is separated into two categories: event revenue and contribution, and each are included on separate lines on Form 990.

  • For example, if the fee to attend an event is $1,000 and the value of dinner provided is $100, the $1,000 is defined as total or gross receipts and the $100 as event revenue. The difference ($900) is defined as contribution revenue. On Form 990, page 9 the $100 is included on line 8a; the $900 contribution on line 1c.
  • Also, on Form 990 you net the cost of a special event against just “event revenue” not the total revenue from the event, which can make the event appear to be losing money, which is not the case with any of our events. For example, the Chef’s Gala and Winged Foot golf tournament generated approximately $3.4 million of total revenue in 2012.

How do you determine your executive pay?

It is the goal of Autism Speaks to pay competitively in the nonprofit health and human services sector in order to attract and retain top talent who will fulfill the mission and achieve results. A formal compensation structure is in place that is based on geography and typically the median or 50th percentile of the market data of similar-sized nonprofit organizations. The compensation structure is linked to Autism Speaks' performance system.

Autism Speaks compares the compensation of its highest compensated employees to like positions in other non-profit organization of similar size. Such comparisons reveal that Autism Speaks’ salaries are in line with compensation paid by similar organizations.

What about your consultants or outside firms?

Outside firms can play a critical role in getting our message out and achieving goals. In some cases they bring in expertise to accomplish a specific goal, or in other cases, they serve as a more prudent way to have extra support when we are not in a position to hire a full time staff. For instance:

• Our Ad Council partnership has helped to raise autism awareness to unprecedented levels. As a result, more people are talking to their doctors and children are getting earlier diagnoses. Increased awareness also leads to a more compassionate community for our families.

• Autism Speaks paid outside lobbying firms $780,000 in 2012 for services and outreach. This was crucial to the initiation in 2012 of outreach to the military community and the pursuit through Congress of reforms to the TRICARE health insurance program, state-by-state insurance reform, as well as support for numerous state and federal bills to support families. In 2012 alone, three new states (Alaska, Delaware, and Michigan) enacted autism insurance reform laws that require private insurance companies to provide coverage for autism therapies, including behavioral health treatment. Five other states strengthened their existing laws by raising the age cap, expanding the markets to which the law is applicable, or taking other similar steps. (As of August 2013, 34 states and the District of Columbia have passed such legislation.)

• The Autism Speaks Autism Treatment Network (ATN) is now made up of 17 leading children’s hospitals and academic medical centers. The ATN brings together the expertise of a multidisciplinary group of over 200 practicing physicians, nurses, specialized therapists, behavioral specialists and clinical researchers to develop and disseminate novel treatments, practice guidelines and clinical tools.

I thought Autism Speaks had a staff of roughly 215, yet the number of total staff on the 990 is 278 employees?

The number of employees shown on Form 990 is 278, which represents the number of individuals (regular placement and in-house temporary staff) who at any time during 2012 were on Autism Speaks' payroll.

Why do you allow first class travel?

Autism Speaks will allow first class travel only in extenuating circumstances. In 2012, there was no instance where first class travel was used.