1991 Painting a Target on Autism
In the early 1990s, an employee in an Atlanta Home Depot outlet had been missing work, then showing up sleepless and unkempt. Company co-founder Bernie Marcus took her aside and asked what was wrong. “Her child had this strange—well, I guess we called it a disability at first,” say Marcus. “Nobody knew what it was. The child was not communicating. He would scream in pain and nobody knew why. Doctors didn’t have the patience to work with him…. That’s when I first saw how autism destroys families.”
Marcus got involved. He learned that one out of every 88 kids has autism, versus one out of every 25,000 who have cancer, and yet cancer funding for children outstripped autism funding by a factor of 200 to one. Finding that “nobody was really doing a good job with this,” Marcus decided to start an autism center himself. After much cajoling he arranged an affiliation with Emory University, and the operation opened with two psychologists working out of a pair of double-wide trailers. In addition to providing heavy financial subsidies every year, Marcus worked energetically to make “autism” a household word. He came up with the idea for Autism Speaks, and provided $25 million to launch the national advocacy organization, which has since raised more than $180 million for research, and expanded insurance coverage to behavioral treatments of autism.
By 2011, the Marcus Autism Center was treating 5,676 children annually. That same year, the center was able to hire away from Yale one of the foremost clinician-researchers in the field, Ami Klin. That spurred Marcus to make an additional $25 million gift (with $15 million more coming from the Joseph Whitehead Foundation) to support a major advance at the center. Dr. Klin and his team have developed eye-tracking technology that allows babies with autism to be identified in their first year, before symptoms develop. With treatment beginning early, instead of around age five when autism is generally recognized today, a child’s development can be much improved. The new technique will undergo clinical trials at the center to gain FDA approval for use nationwide, with the aim of instituting universal childhood screening. Meanwhile, the Marcus Center is gearing up to treat more children as they are diagnosed, pledging to eliminate its current waiting list of 1,700 families.
The $90 million Bernie Marcus has invested has transformed autism from heartbreaking mystery to treatable condition. It has also made Atlanta and the Marcus Autism Center the leading organization for treatment and study in the world. In 2014, the city hosted more than 3,000 scientists from three dozen countries for the International Meeting for Autism Research.
Once this target had been painted on autism as an affliction that can be ameliorated, other donors became involved. The foundation of hedge-fund operator James Simons created a major Autism Research Initiative in 2003. It currently has an annual budget of about $60 million, with which it supports 175 investigators. In the last half-dozen years, Simons’s center has granted more than $260 million to leading researchers.
- Profile in Atlanta Business Chronicle, bizjournals.com/atlanta/print-edition/2013/12/06/autism-research-gets-game-changing-boost.html?page=all
- Philanthropy magazine, philanthropyroundtable.org/topic/excellence_in_philanthropy/building_america
- Simons Foundation Autism Research Initiative, sfari.org/about-sfari