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Autism Speaks 2010 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 $50 million in 2010.   As shown in the chart below, seventy 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. 

 

Below are just a few of our 2010 accomplishments.  (For a more complete recap of our achievements, Autism Speaks’ 2010 Annual Report, including our fully audited financial statements, is available at autismspeaks.org.)

  • An evaluation was conducted on the first 107 Autism Speaks science grants that were completed by the summer of 2010.  Eighty-two percent were judged to have provided novel discoveries that break new ground in autism research, 13% were judged to have extended previous findings and only 5% were considered to have negative results.  (The complete results of the evaluation are available in the science section of autismspeaks.org.)
  • The grants were also evaluated from another perspective: What type of impact on people's lives did the research have? Our science portfolio encompasses addressing what causes autism, what occurs in the body that translates into autism, how can autism be diagnosed, how can autism be treated and how can we make sure the full autism community knows what was learned.Below is a breakdown of those 107 grants by assessment, diagnosis, treatment and dissemination.

  • Beyond statistics, below are a few examples of Autism Speaks funded research which yielded significant milestones in addressing the complexities of autism.
    • The Autism Genome Project (AGP), an Autism Speaks co-funded international research consortium, together with the Autism Speaks’ Autism Genetic Resource Exchange (AGRE), identified several new risk genes, implicating new biological pathways that point to new research directions and development of novel therapeutics. The AGP project also identified gene mutations that begin to explain the male to female sex bias in autism.
    • Autism Speaks-funded researchers at Boston University, using brain tissues provided by the Autism Speaks’ Autism Tissue Program, showed evidence of over-connectivity between neighboring areas of the frontal cortex and long-range under-connectivity between more distant areas.
    • Other Autism Speaks funded studies revealed that children with autism have more trouble fueling the energy demands of their cells due to dysfunctional mitochondria and that both innate and adaptive alterations in immune system functioning increase risk for ASD.
  • In 2010, Autism Speaks expanded its funding of the Autism Treatment Network, now including 17 children’s hospitals and academic medical centers in U.S. and Canada. The physicians and other clinicians are developing empirically-based guidelines for medical care of children with autism spectrum disorders (ASD).

 

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

 

  • Autism Speaks’ award-winning “Learn the Signs” campaign with the Ad Council generated over $258 million in donated media since its inception. In 2010, Autism Speaks’ campaign was the Number One Ad Council campaign in donated media, among more than 60 active campaigns. This campaign was augmented by the first ever “Light It Up Blue” campaign to celebrate World Autism Awareness Day. Awareness of the growing autism global health crisis continues to skyrocket.
  • In 2010, Autism Speaks greatly expanded its community service efforts, awarding Family Service Community Grants totaling $1.5 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. Forty-three organizations were awarded community grants in the U.S. and 26 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 330 campers at 51 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 2010 AutismCares awarded $41,000 to 79 families in 26 states. Since Fall 2007, Autism Speaks has awarded over $3 million through its community grant programs.
  • At the end of 2010, 23 states had enacted insurance reforms measures (up from one before Autism Speaks was in existence) that require private insurance companies to provide coverage for autism therapies including behavioral health treatments. Through the first six months of 2011, four more states (AR, RI, VA, WV) have enacted insurance reform laws while two additional states (NY, RI) have passed bills in their legislatures and awaits Governor signatures.

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 $2 billion.

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 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 for 2009 and 2010, 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. Both years we were above the pre-adjusted standard of 65%. In 2010, for every dollar donated to Autism Speaks, 70 cents went to fund programs and services to support autism research, science programs, awareness, family services and government advocacy.

How is Autism Speaks optimizing its revenue?

Following a decline in 2009, revenues in 2010 began to rebound, increasing $4,790,000 (page 1, line 12 of Form 990). Expenses rose by a similar amount -- $5,024,000 (page 1, line 18). Of the increase in expenses, $4,721,000 was spent directly on additional science and community service grants (page 1, line 13). In effect, 99 cents of each incremental dollar raised in 2010 went to fund science or community grants.

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, with some funds received in 2011, Chef’s Gala and Winged Foot generated $1.6 million and $823,000, respectively. Proceeds after expenses were $1.2 million and $400,000, 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.

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 $730,112 in 2010 for services and outreach. This was crucial to state-by-state insurance reform, federal healthcare reform, as well as the introduction of many bills (examples below) to support families. In 2010 alone, eight new states enacted insurance reform laws that require private insurance companies to provide coverage for autism therapies, including behavioral treatments. (As of June 2011, 27 states have passed such legislation.)
    • Introduction of the Combating Autism Reauthorization Act of 2010 (CARA) to build on the success of the Combating Autism Act of 2006.
    • Obtained $8 million alone in 2010 via the Department of Defense Autism Research Program (DoDARP).
    • 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.
    • 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 238 employees?

The number of employees shown on Form 990 is 238, which represents the number of individuals (regular placement and in-house temporary staff) who at any time during 2010 were on Autism Speaks' payroll.

Why do you allow first class travel?

Autism Speaks will allow first class travel only in extenuating circumstances. In 2010, there was just one instance where first class travel was used.