Breakfast with Democratic presidential candidate
Barack Obama
Home of Billy and Gena Mann
April 20, 2007
◆ Billy Mann, recording artist, producer, and songwriter, director Autism Speaks, parent of an autistic child. When you are struggling to understand what it means when your child is diagnosed with autism, it is utterly terrifying, utterly quiet. The air gets very heavy and there are not a lot of sounds. You lose your footing like you are in a fun house of distorted mirrors. It was like a lightning bolt hit me and my wife, Gena. When you live in New York City, which often thinks of itself as the center of the universe, you assume there are experts all over the place that know exactly what to do for autism. You figure there’s got to be protocol and medication in a city with every kind of hospital and technology available. And instead, we found what the Wrights and so many other families sadly discovered: there aren’t a lot of answers.
I’m a musician and a creative executive and a songwriter and a record producer. I was in the recording studio working on Jessica Simpson’s Christmas album in Los Angeles at the end of 2004 when we got the news that our son, Jasper, was diagnosed as autistic. What happened over the next 8 years was outrageous and terrifying. We struggled with the tough realities of autism like so many other parents.
My search for answers led me to a meeting with the Wrights in February 2007 at a restaurant in Fairfield, Connecticut, near where we both live. Picture it: Bob Wright looking dapper in a straw hat, Suzanne dressed for the back nine at Pebble Beach, and me—6’4”, 235 pounds, with long curly black hair. But it could not have been a more commiserate pairing.
The three of us sat and talked about our frustrations in searching for better ways to help our autistic children. Shock and desperation with the scarcity of information and support drove my wife and me to get involved. I wanted to know what we could do. I grew up in inner-city Philadelphia and I’m a pretty scrappy guy. I’m not afraid to take on something tough.
The Wrights are very powerful people, and that, in part, has to do with the strength of who they are as individuals and the integrity in the way that they communicate with people. If Bob asks you how you’re doing, it’s not a drive-by question. If Suzanne wants to know how your kid is, she really wants to know, because in the back of her mind she’s thinking about how her own kids and grandchildren are doing. They really are, for me, the autism godparents for my family.
Because of all the help and support my family has received from the Wrights and Autism Speaks, I wanted to find a way to give back. About the same time, I was talking to people managing Senator Obama’s presidential campaign about hosting a fundraiser at my home, and I decided to try to tie it into autism. I remember asking Bob if I could count on him to be there with his friends. Bob said, “Sure, kid,” in the same way you’d say it if a little kid comes to you and asks if Derek Jeter will come to his birthday party.
I wanted to get autism on the radar of people in power, so I asked Senator Obama if he would take time to listen to family members of autistic children and reserve his remarks until the end. Obama brought his campaign to our home bright and early one Saturday morning. He briefly visited with my wife and me, and with the Wrights, and then spent 3 hours in our living room, listening to parents’ stories.
After that, I was asked to work on the Obama campaign’s policy statement on autism, which got a full page on his website. My family and the Wrights were present in the Oval Office on September 30, 2011, when President Obama signed the Combating Autism Reauthorization Act. Our autistic son, Jasper, who was 9 at the time, received the first pen used by the president signing the bill into law. The moment was captured in an official White House photograph. Although direct eye contact is very difficult for my son, he looked directly up at the president in the photo.
But autism doesn’t care much about such auspicious moments. Jasper has trouble staying still and asked me to put him on my shoulders. We tried to maintain protocol as long as we could before I excused myself to the president and said I had to answer to a higher power. I picked up a very agitated Jasper, placed him on my shoulders, and quietly exited.
The Wrights have used their position without hesitation, not just because they are looking to cure their own grandchild but for all autistic children and their families. That makes it impossible to not want to go stand right next to them and do what is necessary when it’s game-on time. They really took on autism to say this is not OK for the rich or for the middle class or for the poor. It’s not OK regardless of ethnicity. There still are no answers for autism. And the journey inevitably leads through Washington. ◆
That was the last meaningful rapport we had with presidential candidate Obama and his staff. Suzanne was bitterly disappointed about not getting the Obama administration to agree to lighting up the White House blue for autism awareness in April. First Lady Michelle Obama, like Laura Bush before her, shunned her invitation to join the first ladies of other nations at an annual gathering for autism awareness. We could never get them to support anything we did at the United Nations. It has become such an obvious slight to us even though we have succeeded in securing congressional support for major autism-related legislation. It may have had something to do with that day in the Oval Office when we gathered for the bill signing. While posing for the photos, I may have leaned over to the president and quietly said something like, “You’ve been a disappointment.” OK, so my timing wasn’t great.
◆ Suzanne Wright. We never had the level of support from the Obama administration we expected after his initial interest as a presidential candidate. We tried to pass on letters and invitations using deputies or people having dinner with the president, to no avail. We tried to get answers from people closest to them, like Valerie Jarrett and Tina Tchen. The standard response was that if the White House did things for us, it would have to do things for everybody. To which I would say, “You know, that’s a good idea!” 2016 marks the 7th consecutive year we have asked the Obama administration to join us in lighting up the White House blue for autism.
Every year we host an autism awareness event at the UN for the first ladies and spouses when the presidents and prime ministers of nations around the world come to the General Assembly. They are accomplished women. The former first lady of Albania, Dr. Liri Berisha, is a pediatrician. Sonia Gandhi is president of the Indian National Congress Party and widow of former Prime Minister Rajiv Gandhi, who was assassinated in 1991. Then in 2015, three representatives from China joined our eighth World Focus on Autism with first ladies from around the world for the first time. And now Peng Liyuan, China’s first lady, has invited Bob and I to attend the First Autism Conference sponsored by the Central Government of China in spring 2016. Although our global reach widens, Mrs. Obama never attends; neither did Laura Bush, but that doesn’t stop me from trying. We have a whole generation of children being born into autism. They don’t have time for political games. ◆
So I never apologized for a bare-knuckle approach to fighting resistance to change. You don’t get a lot of gold stars for being the maverick or the status quo disruptor. It’s a constant battle and many chief executives retreat from the front lines, hoping things will take care of themselves long enough to make it their successor’s problem. You often have to hope the grassroots will support your efforts or that some major event will be a catalyst. But sometimes you don’t have the luxury of time. The clock is ticking and something has to change.
The most difficult thing we face at Autism Speaks is the constant denial by the medical and science communities, and even the average person, that autism is a serious health epidemic that we can do anything about. It requires a constant flow of funds for new research and treatment that challenges conventional thinking. Every time a new cancer is announced, everyone applauds, the news covers it. Every time we come out with something about autism, the first thing the doctors and scientists say is that it can’t be true. It’s incredible! No one says that about cancer or multiple sclerosis.
I experienced the same stubborn dissent at NBC when I tried to convince everyone that cable TV and digital interactivity would change everything about the media business. Resistance came from all sides—our own executives, affiliates, and both the broadcast and cable industry. GE simply didn’t want to deal with it.
Some of the change I lobbied for at NBC was more subtle and took a while to be revealed on balance sheets. I had tremendous pushback on the elimination of federal rules barring broadcast networks from having financial interest in the syndication of TV programing they financed but did not own. The fin-syn battles were fierce with Congress, Hollywood, and affiliates. They said the TV networks shouldn’t own entertainment, and of course now they own everything. But it took 10 years to win the right. It was our Korean War at NBC.
In both cases, the pushback led us to Washington and a fight for new legislation that would support our progressive efforts. Having the law on your side silences all kinds of denial.
◆ Suzanne Wright. It was 2004 when Bob and I first went to Washington to try to get some funding support for autism research; at the time, we were still trying to pull together the different autism organizations under one roof. We met with Sen. Chris Dodd and the late Sen. Ted Kennedy, who said to us, “Suzanne and Bob, this is not going to work because you’ve got the Hatfields and the McCoys. You’ve got all these groups fighting about what causes autism and what to do about it.” So we said, “If we can get these guys together under one roof, under Autism Speaks, we’re going to be back here and we’re going to need your help.” Sure enough, a year later, we were back.
And I handed out those little cards to all the congressmen and senators that showed the incidence of autism at the time, so much higher than other conditions. So we learned to go to Washington with an army of people and the facts. And we posed the question, “How can it be we have no answers to the most serious developmental disability? These are the CDC statistics, your own numbers that nobody’s doing anything about.”
Probably our biggest fight that year was passage of the Combatting Autism Act. It would double National Institues of Health funding on autism research, create an early detection program, and authorize $1 billion over 5 years. It had passed the Senate and had 227 cosponsors in the House. But it was being blocked by Rep. Joe Barton of Texas, the chairman of the House Committee on Energy and Commerce. He contended the autism-related matters would be adequately covered in the National Institutes of Health Reform Act.
Barton had openly told a group of his constituents, all of them parents of autistic children, that he was not putting the bill out. So on October 5, right in the middle of his reelection campaign, some of the mothers organized a protest outside Barton’s district office in Waco, Texas. His chief of staff came out to confront them and said only five or so families would be allowed inside the office. The rest of the parents angrily demanded to see him, and someone called the cops. The entire confrontation was captured in a YouTube video that has since been taken down off the service and is no longer available.
When the Combatting Autism Act finally came up for a vote in the House, it passed and was soon after signed into law. Not long afterwards we were on Capitol Hill for some occasion when two congressmen who shall go unnamed invited us to step into an office, where they scolded us for playing too rough! ◆
That was just the beginning. We had to rally governors and individual state legislators for research funds and for health insurance reform, and we had to do it one state at a time. We also had to use our lobbying efforts at the federal level, because the armed services make the federal government the country’s biggest insurer. The full story of how we tackled the enormous problem of insurance coverage is in the next chapter, on the power of the grassroots (Chapter 26).
On November 12–14, 2013, Autism Speaks held its first-ever national policy and action summit in Washington, DC. We brought together more than 200 leaders from across the country, including top Obama administration officials, members of Congress, governors, prominent scientists and policy experts, key stakeholders, volunteers, and activists. It got Congress and our advocacy team squarely focused on the legislative goals we had for 2014. We ended the summit with 150 Autism Speaks representatives visiting all 535 congressional offices with 155,000 signed petitions in hand calling for a national strategy for autism.
A year later our efforts culminated in two key pieces of legislation passed by the most dysfunctional Congress in this country’s history. The Autism Collaboration, Accountability, Research, Education, and Support Act of 2014 (Autism CARES) extended federal funding for autism research, surveillance, and intervention through 2019. The Stephen Beck Jr. Achieving a Better Life Experience Act of 2014 (ABLE Act) allows people with autism and other disabilities to save on a tax-advantaged basis for disability expenses and still remain eligible for Supplemental Security Income (SSI), Medicaid, and other means-tested federal programs.
Shaping federal and state policies has been a slow but steady process. Our single biggest legislative challenge going forward is securing housing, employment, and educational opportunities for autistic adults. It’s not clear right now that we have a government standing with us. Compromises are being made left and right. Without government support, we can’t make this happen.
◆ Rep. Mike Doyle, PA-D. When Chris Smith (NJ-R) and I founded the Autism Caucus nearly 15 years ago, most members of Congress didn’t even understand what autism was. And NIH was devoting darn little money to any research. Early on we had trouble signing members up for the caucus. So we met with a lot of these grassroots organizations and said, “You know, the best thing you can do for us initially is call your congressional representatives and ask them to join the Autism Caucus.” And our phones started ringing off the wall because groups like Autism Speaks got this word out. That allowed Chris and me to build a coalition that increased NIH funding tenfold and reauthorized the Combatting Autism Act to provide $260 million annually for 5 years of autism research. We were nowhere near those numbers when we first started this endeavor.
Where we’re heading now is we have to invest more money in services for these kids that are aging out after their 21st birthday so that they can become contributing members of society. And one of the things we’re trying to stress here in Congress is that autism costs taxpayers about $250 billion annually. We know that 10 years down the road that cost can go up to $400 billion. But we also know that we can reduce those costs by 2/3 with early intervention. If we get to these kids early and get them into services and treatment, then they can become productive members of society, especially if they are on the higher functioning end of the spectrum. We can spend $100 million upfront being proactive about these things and save $125 billion down the road. ◆
◆ Katie Wright. The Combating Autism Act never would have passed had it not had such huge grassroots support and participation by many parents. I think that’s something that scientists forget. There are hundreds of families just showing up on Capitol Hill with their autistic children, saying, “I’m just going to sit here until you can tell me why you’re not supporting this bill!” Those are grassroots forces at their best. A lot of naysayers about the bill insisted we couldn’t afford it. Then families with autistic children would show up and say, “Let me show you what this is like. See for yourself. Then I want you to tell me that this isn’t a priority.” My dad taught me early on this isn’t a personality contest; this is a mission. ◆