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A voice for science Convinced by the evidence that vaccines do not cause autism, Alison Singer started a research foundation that pledges to put science first. he e-mail that ended one BY MEREDITH WADMAN that as a matter of personal conscience, I can- career for Alison Singer, but not vote in favor of dedicating more funds to started another, arrived as whether vaccines can trigger the disorder of vaccine research that has already been under- she was cooking dinner for communication and movement. Singer knew taken and which I and many others find con- her daughters one evening immediately that this would cause her seri- clusive,” her message read. “I feel compelled to in January 2009. Singer was ous difficulties. Having read the literature offer my resignation.” preoccupied. At a commit- and talked to numerous scientists, she was With that, Singer became a solo opera- tee meeting she was due to attend in Wash- convinced that no studies supported a link tor in the world of autism-research funders. ington DC the next day, she and others were between autism and vaccines. But she was also Within months, she would launch the Autism T IMAGES GETTY BY BOLFO/GA ANTONIO set to vote on a plan that would direct much the top communications executive at Autism Science Foundation (ASF), a tiny New York- of the United States’ spending on autism Speaks in New York, autism’s most prominent based charity with a relentless focus on rigor- research for the next year. research and advocacy group. The organiza- ous science, a niche supporting the youngest Singer, who had her laptop perched on the tion supports vaccine-related research, and researchers and a guiding principle that “vac- kitchen counter, immediately noticed the Singer knew that her bosses would expect her cines save lives; they do not cause autism”. e-mail from another committee member — to vote for more studies of vaccines as a pos- The ASF is scarcely a blip on the big screen a mother who was convinced that vaccines sible cause of the condition. of autism-research spending: in this, its sec- had caused her son’s autism. The message At 11:10 p.m., Singer hit ‘send’ on an e-mail ond full year of operations, it is awarding proposed last-minute language for inclusion of her own, to Bob and Suzanne Wright, the US$220,000 in grants to young researchers; in the plan, endorsing more research into co-founders of Autism Speaks. “I’ve concluded last year, it spent $180,000. The two major 28 | NATURE | VOL 479 | 3 NOVEMBER 2011 © 2011 Macmillan Publishers Limited. All rights reserved FEATURE NEWS non-governmental players in US autism including a television, crashing to the floor. troubled by her inability to communicate. “She research, the Simons Foundation in New York Willowbrook was a Dickensian institution used to recite the Madeline book from begin- and Autism Speaks, last year spent $54 million that would eventually come to symbolize every­ ning to end perfectly,” says Singer. “But if I said, and $21 million, respectively (see ‘All change thing that was wrong with the way America ‘Do you want juice?’ she couldn’t answer yes for autism). cared for its mentally ill. In 1965, New York or n o.” But Singer’s charity is drawing notice as Senator Robert Kennedy alluded to the facility Singer called the state department of health much for the aims and quality of its work as for as “a snake pit”. In 1972, an undercover exposé several times to schedule an assessment for its magnitude. In August, GuideStar, a major by local television channel WABC-TV showed Jodie. Each time, in a rush of ambivalence, she charity-rating group based in Washington DC, residents sitting and staring vacantly; rocking, would call back and cancel. Finally, she made a singled out the ASF as a “promising start-up”, often naked, in overcrowded, barren rooms; or firm appointment. When a psychologist and a calling it “a shining star to those interested in abandoned on bathroom floors. When Singer case worker visited her at home, Jodie was two real science and evidence based interventions”. The fledgling foundation has also won endorsements from leaders at the American Academy of Pediatrics in Elk Grove Village, “People didn’t talk about it then. Illinois; the National Institutes of Health (NIH) in Bethesda, Maryland; and the Cent- There was a tremendous stigma ers for Disease Control and Prevention (CDC) in Atlanta, Georgia. “The Autism Science associated with autism.” Foundation is an important voice for scien- tific direction in the autism community,” says and her family visited Steven, they would see years, eight months old. (Singer had just given Coleen Boyle, the director of the National him only in the visitors’ room. Still, the stench birth to Jodie’s healthy younger sister, Lau- Center on Birth Defects and Developmental of urine bothered Singer. So did the noise. ren.) Singer expected them to say that nothing Disabilities at the CDC. “There was a lot of screaming,” she recalls. “I was wrong. Instead, they diagnosed Jodie as The jury is still out on whether Singer and didn’t like it.” severely autistic, telling Singer gravely, “Don’t her tiny organization can do much to combat In 1971, shortly before the documentary worry, we’re going to get her help.” When they the perception of a link between autism and aired, the Tepper family moved from the New were gone, says Singer, “I just bawled”. vaccines that has become cemented in many York borough of Queens to the suburbs, and Then, she says, “I pulled myself together”. minds. But if anyone is going to do it, Singer is a transferred Steven to a nearby facility called strong candidate. She “is a force of nature”, says Letchworth Village. In time, the family — DRIVING ON Thomas Insel, director of the National Institute Singer also has a younger brother — began ‘Together’ seems an apt word for Singer. She of Mental Health in Bethesda, which spends visiting Steven less often. Singer’s mother, comes across as organized, articulate and, more than $80 million on autism each year — who had been told she was to blame for Ste- above all, driven — although not without a more than half of the NIH’s autism budget. “I ven’s condition, instructed her daughter to tell sense of humour. On a September day, Singer have enormous respect for her abilities.” people that she had just one, younger, brother. showed this reporter around what she jokingly “She is one of the most strong-willed people “People didn’t talk about it then. No one talked referred to as “the worldwide headquarters” of that I have ever met,” adds Christie Buchovecky, about it,” Singer says. “There was a tremendous the ASF: a cubicle on the fourth floor of a lower an ASF-funded graduate student at Baylor Col- stigma associated with autism.” Manhattan office building. There, Singer’s one lege of Medicine in Houston, Texas, who has Singer carried her secret out of childhood as paid member of staff — Jonathan Carter, a a 12-year-old cousin with autism. “And she she set out to become a journalist. In 1993, hav- recent college graduate with an autistic brother somehow manages to do that while still being ing graduated with a degree in economics from — was labouring over the just-relaunched ASF extremely caring and supportive. She knows Yale University in New Haven, Connecticut, website. Singer herself does not draw a salary. where the parents are coming from.” and a master’s from Harvard Business School It’s a long way from the high-flying position in Boston, Massachusetts, she was hired as she held at Autism Speaks, where in her last year ALL IN THE FAMILY vice-president of programming for the cable she made $187,000. Bob and Suzanne Wright On Saturdays 40 years ago, when Singer (then division of tele­vision network NBC. Singer was had made Singer their first employee when Alison Tepper) was 5 years old and wanted to charged with bringing news content to desk- they launched the group in 2005, shortly after be in ballet class, she and her parents would top computers through the new phenomenon their grandson was diagnosed with autism. set out on a very different errand: visiting called the Internet. She married in 1994; in They were well placed to make things happen: her autistic 7-year-old brother, Steven, at the 1997, her first daughter, Jodie, was born. Singer Bob Wright was chief executive of media con- Willow­brook State School, an institution on thought something was wrong, she says, “from glomerate NBC Universal and vice-chairman Staten Island, New York, that housed more the day she was born”. Jodie cried constantly. of General Electric, NBC’s parent company. than 5,000 people diagnosed with mental She didn’t want to eat. She wouldn’t sleep. One During the group’s first months, when Singer retardation and developmental disabilities. diagnosis followed another: failure to thrive; served as interim chief executive, she, Suzanne Singer’s parents had placed Steven in Wil- early colic; late colic. “I just thought I didn’t Wright and an assistant constituted the entire lowbrook out of fear for their children’s safety. have the mommy gene,” Singer recalls. staff. Working with a shared passion and pur- Steven could be self-injurious and a danger to She started questioning her mother over pose, from an office on the 51st floor of NBC others; once, he had brought a whole wall unit, and over. “‘Did Steven ever do this? Did Steven Universal’s headquarters, Singer and Suzanne ever behave like this?’ My mom would say: ‘No, Wright became fast friends.

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