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Autism Speaks 2009 Form 990: General Information and Q&A

In 2009, despite the recession, Autism Speaks ended the year as fiscally sound as in 2008.

Where did my money go?

  • Thanks to funds raised by individuals, corporations and foundations, we saw research breakthroughs and met all of our commitments to fund grants in the areas of environmental and genetic risk factors, neurobiology and treatment. We continue to have a strong research focus on new treatments for individuals with ASD throughout the lifespan. Some examples:
    • The Autism Genome Project reported the discovery of several autism risk genes that point to new directions for drug discovery.
    • We launched a large study of environmental risk factors and their interaction with genetic susceptibility in a large cohort of infants at risk for autism.
    • A large study of young children with ASD provided a better understanding and documentation of autistic regression.
    • Research demonstrated that prenatal ultrasounds do not appear to be a risk factor for ASD, but new evidence showed that PCBs might increase risk.
    • We hosted meetings on mitochondrial disorder, GI problems, early detection and early intervention, and environmental risk factors.
    • We funded several important initiatives focused on increasing the quality of medical care and physician training.
  • We used our influence and strength as an organization to have over $116 million in stimulus funds allocated to autism research in FY09 and FY10. This was in addition to securing maximum FY10 appropriations for the Combating Autism Act ($275 million) and Department of Defense Autism Research Program ($8 million).
  • Autism Speaks played a critical role in getting seven new states to end insurance discrimination. To date, 21 states have enacted laws that require coverage for evidence-based, medically necessary autism treatments.
  • Due to our awareness and advocacy efforts, and those of the autism community, President Obama named autism as one of his three top health priorities: Cancer, Heart Disease and Autism
  • In collaboration with 12 other organizations in the autism community, we kicked off Advancing Futures for Adults with Autism by holding a Think Tank (Jan.) and National Town Hall (Nov.) to address issues of concern to adults with autism including housing, employment, recreation and community support.

What is the best way to understand Autism Speaks' accomplishments and finances? Autism Speaks' Annual Report, including annual audited financial statements, presents a very comprehensive picture 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 is your program ratio?

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

What did you do to stay financially sound during the recession?

In 2009, Autism Speaks' revenues declined substantially, by over $20 million, due in large part to the difficult economic climate faced by all businesses and especially non-profit organizations. In order to maintain its strong financial position, Autism Speaks was forced to make some very difficult cuts which reduced expenses across every department including reducing staff by over 40 positions and withholding salary increases for all employees. Every expense category in 2009 either approximated 2008 spending or showed a decline: supplies & equipment down 25%, travel down 65%, postage down 48% and printing down 43%. Though we made substantial reductions, we were able to fund over $18 million in research. In the years 2006 through 2008 when Autism Speaks revenues were increasing substantially, a higher share of our revenue growth went to fund additional grants.

Why do the special events look like they are losing money?

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, 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. 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, with some funds received in 2010, the Concert for Autism Speaks and Chefs Gala generated $1.6 million and $1.1 million, respectively. Proceeds after expenses were $1.3 million and $800,000, respectively.

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.

What about all 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 an outside lobbying firm $694,039 in 2009 for services and outreach, including $451,000 for media placement of an ad campaign to end autism insurance discrimination. This firm was crucial to state-by-state insurance reform, federal healthcare reform, as well as the introduction of many bills to support families:
    • Autism Treatment Acceleration Act (ATAA) – would provide enhanced treatment, support, services and research for people with autism and their families; authorize grants for adult services; and require insurance coverage for the diagnosis and treatment of autism.
    • Achieving a Better Life Experience (ABLE) Act of 2009 – would enable the family of a child with a disability to save for the child's future without fear of losing federal benefits.
    • Continue and expand federal funding of autism research under the Combating Autism Act of 2006 (CAA) and the Autism Research Program (ARP) of the Department of Defense. The American Recovery and Reinvestment Act (ARRA) also committed $10 billion in new funding to the National Institutes of Health over the next two years, including $116 million for autism research.

If you let so many staff go, why is the number of total staff on the 990 at 248 employees?

The number of employees shown on Form 990 is 248, which represents the number of individuals (regular placement and in-house temporary staff) who at any time during 2009 were on Autism Speaks' payroll. The 248 is inflated by employee turnover, including employees who were laid off at the end of 2008 who received severance payments, as well as former temporary employees. Unfortunately, Autism Speaks was not immune to the negative effects of the global recession that affected most organizations.