Creating a global springboard for autism made the process of transforming NBC look like child’s play. At NBC, although it took 2 decades of pushing, the warring constituents—affiliates, advertisers, program producers, and NBC and GE executives—were eventually reconciled. Autism is a different story. On autism’s broad, disjointed spectrum, there are as many points of view as there are conditions, resulting in many dissonant factions. I’m not sure they can ever be reconciled.
My experience in crusading for change in the two different circles—corporate and philanthropic—reveals uncanny parallels as well as stark differences. Both organizations challenged the status quo and innovated inside of rigid institutions. NBC was a major GE asset governed by the conglomerate’s internal processes. Autism Speaks’ advocacy hinges on Congress, the medical and scientific communities, and insurance companies, and its interface with all of them can border on the absurd. NBC and Autism Speaks rely on strategic alliances for resources to launch new projects. In both cases, properly motivating and empowering others has been critical. As the new president of NBC in 1986, I inherited a challenged broadcast system and workforce that had to be rebooted for cable and the digital age. Rapidly changing technology and interactivity would inevitably force the transformation. Autism Speaks offers no such assurances; we must fight for every measure of change.
But the beginnings of Autism Speaks presented one challenge that has no parallel at NBC—the question of awareness. I seriously doubt there were a dozen people in the US who were unfamiliar with NBC in 2004, but practically everyone, including extremely intelligent, well-informed people, knew nothing about autism, had never even heard the word. I knew from the very beginning that if we were going to accomplish anything, increasing awareness had to be the first priority, because everything else—raising funds, supporting research, getting better legislation, putting pressure on insurers, everything—flows from it. Awareness is the gateway through which we accomplished everything else, and it still is.
◆ Suzanne Wright. We had no idea what was behind the terrifying change in our grandson. Then one night, before we had the official diagnosis, my daughter called me in tears. “Mom,” she said, “I know it’s autism.” And I said, “What the heck is autism?”
Can you imagine that? This was only 11 years earlier, and I had no clue. We had no idea what we were dealing with.
Then, that terrible day when we got the diagnosis, I knew just one thing: I’ll do whatever it takes to get help, go anywhere I need to go to get some answers. ◆
With the assurance of $25 million in startup funds from Bernie Marcus and plans to launch Autism Speaks under way, Suzanne and I traveled around the country seeking the support and wisdom of doctors, researchers, and other professionals involved in autism study and care.
Many times it seemed to us that modern mental health was more like medieval medicine. It’s people talking about problems to other people but not having drugs or real treatments to deal with it. And until you get drugs or really proven treatments, you can’t get into the category of medically treatable. And that category is where you get insurance and it’s where you get reimbursement for the cost—a very critical juncture.
That catch-22 existed when we launched Autism Speaks. At the time, legislators, doctors, scientists, and insurance companies would not listen to our plight because they didn’t have to—not until our numbers and individual achievements demanded it. That’s when I knew our first task was to create a tidal wave of awareness.
Then, in late October 2004, there was a kind of turning point.
Bernie and I had gone to a conference at the Kennedy Krieger Institute, which is affiliated with Johns Hopkins. We were there at the invitation of the center’s director, Dr. Gary Goldstein, who had come to our home with Bernie for that very first meeting. At this conference, listening to various physicians and scientists, it hit me just how bizarrely unequal are the resources for autism.
Jose Cordero, an assistant surgeon general assigned to birth defect studies at the Centers for Disease Control, presented a chart tracking the incidence of leading diseases and conditions. On that chart was one alarming statistic: 1 out of every 166 children in America would be diagnosed with autism. I was stunned. Bernie and I looked at each other in dismay. Cordero, however, seemed indifferent. I couldn’t keep quiet.
“Jose, I just don’t understand that chart you have up there. You talked about autism in the same vein as diabetes and AIDS, cystic fibrosis, and muscular dystrophy. But the numbers on your chart don’t add up. None of the conditions you have listed up there are as prevalent as autism, but they all receive far more government funding.”
“Yes, that’s correct,” Cordero agreed.
I was almost shouting. “The number of children being diagnosed with autism is climbing at an alarming rate, and yet pediatricians and other medical professionals we speak to are not aware of the statistics!”
“It is a terrible situation,” Cordero replied, trying to calm me down.
“But why don’t people know?” I pressed on. “Why don’t they have this information?”
“Well, we don’t really know a lot about autism and these statistics would be very disconcerting. We wouldn’t know what to tell them. They wouldn’t know what to do. There’s no treatment or cause. We’re not ready to explain it,” Cordero conceded.
I couldn’t believe my ears. Here was our own government completely oblivious to an emerging epidemic. The guy with the numbers doesn’t even tell anybody! “All the more reason to raise awareness with parents, doctors, and the scientific community!” I bellowed.
Then, almost as an afterthought, Codero said the CDC had budgeted $2 million for a national informational campaign to begin spreading the word about autism.
“Do you know how much advertising $2 million will buy?” I demanded. “Maybe two days’ worth! That’s not a national campaign!”
Now I was on solid ground; I understood the world of advertising, and I knew what to do. So Bernie and I huddled briefly, and then after the presentations, we approached Cordero with an offer.
“We’ll make you a deal,” I began. “We will help you raise autism awareness with a national public campaign that we will pay for. You will use the $2 million to enlighten pediatricians and other medical professionals. You will give them all the statistics the CDC has on the subject.” Cordero agreed.
That was the catalyst for the award-winning Autism Awareness campaign that we developed with Andrew Robinson, chief executive of BBDO, one of the world’s leading ad agencies, and the Ad Council. Andrew assembled a creative team led by famed producer David Lubars, and the Ad Council donated airtime. The ads they produced became famous for their simple effectiveness. In one memorable spot, a dad plays catch with his young son as the voiceover narrator says, “The chances of your child becoming a major league baseball player are 1 in 40,000. The chances of him being diagnosed with autism are 1 in 166.”
That one statistic—1 in 166—became a powerful weapon for us, and Suzanne knew how to use it. She was ferocious.
◆ Suzanne Wright. Until this point, autism was winning. It was going into these homes, taking these children into the darkness, and these poor parents couldn’t do anything. I was so determined to get some answers, some help.
So Bob and I made up a card: the numbers of leukemia, the numbers of diabetes, and so on. And then the numbers of autism: 1 in 166. I took that card to the NBC news department. “OK,” I said, “this is something that has to be covered. There is a hidden epidemic of autism. Tell me why we don’t know about this? Why? Nobody is talking about it, therefore we have no awareness, therefore we have no answers.” It was a story waiting to be told. Within months, the autism crisis became the focus of a series of compelling NBC News reports, and that prompted government hearings and independent studies.
Then I gave that same little card with all the numbers to all the congressmen and senators. “These are not my numbers,” I said, “these are your numbers. From the CDC. These are numbers that you give out and nobody’s doing anything about this. How can this be?” That’s what I convinced them on, because there’s no arguing with the numbers.
Early on I had the idea of involving Toys “R” Us as a supporter. So I went to see the CEO, Jerry Storch, and I just laid it out for him. I said, “Jerry, do you have any idea how bad this is?” He was very honest, and he said no. Then when I gave him the numbers, he said, “How could that possibly be?” And I said, “Yes, Jerry, that’s exactly what I said at first. How can this be that nobody’s talking about this? How could this be that you are running a toy company, and here I am, the wife of the president of NBC, and we don’t know about this? These are the kids that you’re selling toys to. You need to do this.”
He was shocked at the numbers. As a matter of fact, he didn’t really buy it at first. But when he looked into it, he said, “I’m in.” Every April, they collect donations at the cash register, then they sponsored our walks nationally, and over all these years we’ve collected almost $20 million. ◆
◆ Andrew Robinson, CEO BBDO Worldwide. One day I got this call from Bob Wright, who at the time was vice chairman of GE, a very important client of ours. “I’m going to ask you something,” he said, “and you can say no.” That was the only time I’ve ever heard Bob say that. He told me to expect a telephone call from the Ad Council asking if BBDO would prepare an ad campaign to raise awareness about the rising incidence of autism and the need for early detection. He warned that this pro bono assignment would be a lot of work and I should not feel obliged to accept it. How could I refuse?
We recruited celebrities whose lives had been touched by autism, and the Ad Council donated $250 million in air time. High-profile celebrities, from Billy Mann to Ed Asner to Tommy Hilfiger, who closely identified with the pains and uncertainties of autistic families because of their own personal experiences, volunteered their time. We made 25 public service spots, and won lots of awards, and people still remember them because they were so powerful.
We were only a year or so into the awareness campaign when Suzanne started working her magic by convincing the United Nations to host an annual Autism Awareness Day and getting companies around the world to light up their buildings blue for a day. That took the issue of awareness to a whole new level.
It’s all about going big or going home; finding things that are really going to matter and have a huge impact even in a relatively short period of time. ◆
◆ Laura Slatkin, founding president Candela Group and NEST Fragrances; founder New York Center for Autism and the Developing Brain and NYC Autism Charter School; Autism Speaks board member. When our son, David, was diagnosed with autism, we got in touch with our very dear friend, Deeda Blair. She sat on the board of the National Institutes of Mental Health foundation and arranged a meeting with NIMH director Tom Insel. This was April 2003. We wanted to tell him about our plans and get his advice on how to best move forward. We thought it would be as simple as identifying the problem and solving it.
But Tom did not give us much to feel happy about. “We do not really know much about autism,” he said. “It is a very complex disorder. There are not a lot of great opportunities to fund important research. We just have no idea what causes it, let alone how to cure it. With so little to go on, there is not much immediate hope.”
Then, not long after, Bob and Suzanne Wright created Autism Speaks. Bob told me something I’ve never forgotten: he said if we raised awareness about autism, the money would follow. And he was right. They let the medical community know that money would be invested in autism. When scientists, universities, and hospital administration or the leadership of these hospitals and universities find out that there is a lot of money going behind a disorder, they then begin to devote resources to it.
The sad thing is that even though we spent a lot of money on research, we still do not know what causes autism. We know more than we did 5 years ago, but we do not know what causes autism and how to cure it. We don’t know how to treat the new wave of people with autism, 85 percent of who are under age 21 and we do not know how they will be cared for and supported through their adult life. Without a cause and a cure, these are the next most critical issues we face as a society. ◆
◆ Dr. Gary Goldstein, president and CEO Kennedy Krieger Institute of Johns Hopkins. I have been head of the Kennedy Krieger Institute in Baltimore, Maryland, for 24 years. Our commitment is to developmental disorders of the brain, and developmental disabilities broadly—both physical and the behavioral. Autism represents about 20 percent of what we do.
But Bernie Marcus and I knew we could never have pulled off what the Wrights have done, which is why we traveled to meet with them at their Connecticut home in July 2004 to solicit their help. Building an infrastructure for autism has to be a national, public effort by people who have enormous leadership skills, resources, and reach. They’re raising $60 million a year in mostly small donations and the local walks. It’s a grassroots effort.
Bob and Suzanne orchestrated a red-carpet grand opening of Autism Speaks in Hollywood in the fall of 2005, complete with Jerry Seinfeld after a $1,000-per-plate dinner. Then came Light It Up Blue and United Nations Autism Day, and the Wrights were involving the entire world. Nobody else had ever done that. And they began tapping into the families of autistic children and the power of these families to raise funds, share experience, and bring their energy and passion to the cause. It’s an amazing force capable of influencing state government and federal government, the medical community, and the research. ◆
That day in 2004, when I first heard the 1 in 166 number, I was flabbergasted. It seemed impossible. But as it turned out, things were worse than I realized. I didn’t know it at the time, but even then that statistic was out of date. One in 166 was the CDC prevalence for the year 2000. By 2004, it was 1 in 125.
Today, things are even worse. On March 27, 2014, CDC released new numbers: 1 in 68 American children have autism spectrum disorder. In spite of all our hard work, autism seems to be winning. Some might say that the new statistic is evidence that our push for awareness is succeeding, that more children are being accurately diagnosed. I try to hold on to that, but some days, knowing that more of our children are being diagnosed with this devastating condition is small comfort.