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Autism Speaks 2011 Form 990: General Information and Q&A

Where did my money go?

Autism Speaks is enormously thankful to our many donors – individuals, families, corporations, and foundations – that combined contributed in excess of $55 million in 2011.  As shown in the chart below, seventy-four percent of those dollars went directly to fund Autism Speaks’ program services composed of its four core mission areas: science, awareness, family services and advocacy. The chart below is based on the information in the tax Form 990 which shows that the program ratio is 74%. The chart found in the Annual Report is based on the audited financial statements. Those numbers show the ratio to be 73%. The difference is due to the various inconsistencies in how information is required to be presented in tax Form 990 versus how information is required to be disclosed in the audited financial statements. 

Below are just a few of our 2011 accomplishments. (For a more complete recap of our achievements, Autism Speaks’ 2011 Annual Report, including our fully audited financial statements, is available at

  • The game-changing California Autism Twins Study was published, which made possible by both Autism Speaks funding and the direct participation of our Autism Genetic Resource Exchange staff and volunteer families. As the largest ever study of twins with autism, it 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 – at least in children with an underlying genetic predisposition.
  • Funded, through support of two Weatherstone Predoctoral Fellows, the development of a superior mouse model that reproduces an important genetic abnormality associated with autism. Researchers are now using this mouse to develop and test potential therapeutics.
  • Autism Speaks funded a landmark study looking at levels of inflammatory markers in the blood of young children with autism spectrum disorder (ASD). The researchers found elevated levels of these inflammatory markers in children with a history of regressive ASD, with increasing levels of inflammation associated with more impaired communication and repetitive behaviors. The findings suggest that ongoing inflammation may be linked to some forms of autism.
  • Added four new centers to our Autism Treatment Network (ATN), expanding to 17 clinical centers across North America
  • Reached the benchmark of 4,000 children enrolled in ATN patient registry and over 22,000 families served annually at ATN clinics
  • Developed evidence-based guidelines for the diagnosis and treatment of gastrointestinal disorders and other health conditions associated with autism.
  • Close to $150 million in federal funding was leveraged from the initial $16 million invested in research grants.
  • Demonstrated, through research, that a brief questionnaire can be used by pediatricians to screen for autism at 12 months of age

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

  • Autism Speaks award-winning “Learn the Signs” campaign with the Ad Council generated over $300 million in donated media since its inception. In 2011, Autism Speaks was once again named one of “America’s Greatest Brands” by the American Brand Council. The “Learn the Signs” campaign was augmented by the “Light It Up Blue” campaign, which saw over 2000 buildings and homes participate throughout 65 countries to celebrate World Autism Awareness Day. Awareness of the growing autism global health crisis continues to skyrocket.
  • In 2011, Autism Speaks greatly expanded its family service efforts, awarding Family Service Community Grants totaling $2 million. These grants provide funding to build the field of services for individuals with autism and expand the capacity to effectively serve the autism community.  Thirty organizations were awarded community grants in the U.S. and 27 organizations in Canada. (Canadian operations are not included in Autism Speaks’ US tax return.)  Programs were funded in the areas of education, recreation and community activities, and young adults and adult services. Grants were also awarded to summer camps so that financially disadvantaged individuals with autism may attend. The program provided funding to more than 300 campers at 47 camps. Autism Speaks also manages AutismCares, a group of several autism organizations that provide funds to families affected by autism to cover costs associated with critical living expenses or to deal with the aftermath of natural disasters such as floods or hurricanes. In 2011 AutismCares awarded $79,000 to 182 families throughout the United States. Since Fall 2007, Autism Speaks has awarded over $5 million through its family services grant programs.
  • Autism Speaks Co-founders Suzanne and Bob Wright and Board Member Billy Mann were the invited guests of President Obama when he signed the Combating Autism Reauthorization Act (CARA) of 2011 into law, continuing the federal investment in autism epidemiology, science, and services. Congress authorized $693 million in CARA spending over the next three years.
  • As of the end of 2011, a majority of states (29) now have autism insurance reform laws thanks to Autism Speaks’ advocacy efforts during 2011 which added California, New York, Virginia, West Virginia, Arkansas and Rhode Island to the fold. Seven of 10 Americans now live in a state with laws requiring health insurance plans to cover the diagnosis and treatment of autism spectrum disorders. Through the first six months of 2012, Michigan and Alaska have enacted insurance reform laws.

The Global Autism Community

Through the efforts of a great many people worldwide, autism is more in the forefront than ever before. Autism Speaks is proud to have played a role in making the world more aware of ASD.  It is difficult to quantify a specific dollar value of such a benefit to the autism community. The value of benefits, none of which are reflected in Autism Speaks’ financials, including research originally funded by Autism Speaks and now leveraged by other organizations and governments, media campaigns and insurance benefits, is estimated at roughly $3 billion, one billion more than a year ago.

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) 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 ratio in 2010 was 70% up from 67% in 2009. In 2011, for every dollar donated to Autism Speaks, 74 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, Chef’s Gala and Winged Foot generated approximately $1.3 million and $1 million, respectively. Proceeds after expenses were $0.8 million and $0.5 million, 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.

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 $867,740 in 2011 for services and outreach. This was crucial to the passage in 2011 of the Combating Autism Reauthorization Act, state-by-state insurance reform, as well as the introduction of many bills to support families. In 2011 alone, six new states enacted insurance reform laws that require private insurance companies to provide coverage for autism therapies, including behavioral treatments. (As of June 2012, 31 states have passed such legislation.)
  • Outside professionals were used to manage the ever expanding Autism Treatment Network (ATN) which has now expanded to 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 200, yet the number of total staff on the 990 is 257 employees?

The number of employees shown on Form 990 is 257, which represents the number of individuals (regular placement and in-house temporary staff) who at any time during 2011 were on Autism Speaks' payroll. 

Why do you allow first class travel?

Autism Speaks will allow first class travel only in extenuating circumstances.  In 2011, there was no instance where first class travel was used.