. The World is Listening

An Interview with Bob and Suzanne Wright, Co-Founders, Autism Speaks

ORGANIZATION BRIEF Founded in 2005 prevalence numbers, but as the public health by Suzanne and Bob Wright, Autism Speaks crisis was growing, they weren’t even mak- (www.autismspeaks.org) is dedicated to increas- ing parents aware of the early signs of autism. ing awareness of autism spectrum disorders; The American Academy of Pediatrics now rec- funding research into the causes, prevention, ommends that all babies be screened for au- and treatments for autism; and advocating for tism at 18 and 24 months, which is a huge the needs of individuals with autism and their accomplishment. families. Bob: The CDC showed us a track of increas- ing prevalence, which was statistically shocking. When you initially founded Autism Speaks Twenty years ago, it was approximately one in in 2005, based on a very personal experi- 2,500; now, it’s one in 110 and it’s one in 70 ence with your grandson, were you sur- boys. Bob and Suzanne Wright prised at how much needed to be done in We have accomplished a great deal, but this regard? we’ve also increased the breadth of what EDITORS’ NOTE Bob Wright served as Vice Bob: We were surprised at how little there we’re trying to do, which makes it more com- Chairman and Executive Offi cer of the General was being done. We could not believe the prev- plicated. We have moved beyond awareness, Electric Company, and also Chairman and Chief alence. We also recognized that when we saw trying to get pediatricians more aware and en- Executive Offi cer of NBC Universal. He joined what was being done and we realized what had gaged, and from getting the NIH involved in NBC as President and Chief Executive Offi cer on to be done for Christian, we couldn’t fi gure out a major way. Now we’re into education, the September 1, 1986, and served as Chairman and how other people could possibly afford this, discriminatory practices of insurance compa- Chief Executive Offi cer of NBC Universal until May especially since insurance didn’t play any role nies, and dealing with teenagers and young 1, 2007. Bob had one of the longest and most suc- in it. adults, including getting housing for adults. cessful tenures of any media company chief execu- We began to travel around the country to All of those things are extremely troubling tive, with more than two decades at the helm of one fi nd out more, and every time we showed up and require small armies of people to address of the world’s leading media and entertainment some place, we got more agitated. We let peo- each of those areas because they all have a companies. He has a strong history of philanthropy ple know that we were interested in trying to lack of funding and enormous liabilities as- and community service, for which he has received make a difference. Bernie Marcus (co-founder sociated with them. numerous awards and accolades. Bob serves on of Home Depot and founder of ’s Marcus Suzanne: We have been very successful in the board of directors of the Polo Ralph Lauren Autism Center) expressed interest in getting the effort to change state insurance laws. Now Corporation, and is a Trustee of RAND Corporation involved and sat down with us and Dr. Gary 15 states require insurance companies to cover and of the New York Presbyterian Hospital. He is Goldstein (President and CEO of the Kennedy behavioral therapies for autism, including diag- also a Senior Advisor of THL Investment Capital. Krieger Institute in Baltimore). He had put a ton nosis and other critical services. There is also Bob is a graduate of College of the Holy Cross and of money into autism, but was disappointed that similar language in both the proposed House of the Law School of University of Virginia. he could not get any laws changed, especially and Senate health care reform bills. That is one Suzanne Wright has an extensive history of insurance reform, and he was overwhelmed of the biggest things Bob and I feel we can active involvement in community and philan- with people coming to his clinics who he could do for this community, because their insurance thropic endeavors, mostly directed toward help- not fully service. So this frustration formed the is not good – people are paying signifi cant ing children. She serves on the boards of several basis for our partnership. He gave us $25 mil- amounts for insurance coverage, but the expen- non-profi t organizations and is also Trustee lion to establish Autism Speaks. sive treatments their children desperately need Emeritus of Sarah Lawrence College, her alma We knew we could help our grandson, but are not covered. It’s an abomination. mater. Suzanne has received numerous awards we were worried about the other families that You’re now fi ve years down the road such as the CHILD Magazine Children’s Champion were going through this. We saw low-hanging and you’ve had so much impact in so many Award, Luella Bennack Volunteer Award, and the fruit all over the place – in science, in medical areas, but you still have a lot of progress to Spirit of Achievement award by the Albert Einstein treatment, in care, in diagnosis, and in the lack make. Is it frustrating that things don’t al- College of Medicine’s National Women’s Division. of hospital resources. ways happen in a more timely fashion? In 2008, Suzanne and Bob were named to Suzanne: I’ve never seen a group of Bob: I am used to dealing with the govern- the Time 100 list of most infl uential people in parents and people in such desperate shape. ment and with products that take a long time to the world for their commitment to global autism Autism was taking a terrible personal toll on develop as a result of my time with GE. But we advocacy. They have also received numerous these families, there was no insurance coverage have to build out an organization that is solid awards, including the fi rst Double Helix Medal for their children’s treatments, the school dis- enough to address these various points. We’re for Corporate Leadership, NYU Child Advocacy tricts were denying them help, and the medical fi ghting wars on different fronts now, and we’re Award, Castle Connolly National Physician establishment was denying them – they were accomplishing a lot. I’ve worked with bureau- of the Year Award and The American Ireland discriminated against on all levels. The Centers cracies all my life and it can be very frustrating, Fund Humanitarian Award. for Disease Control (CDC) was putting out the because they do not like to move quickly.

36 LEADERS POSTED WITH PERMISSION. COPYRIGHT © 2010 LEADERS MAGAZINE, INC. VOLUME 33, NUMBER 2 Is the stigma associated with autism he is also supportive of both health bills in going to be faced with huge diffi culties dealing starting to fade? Congress, which provide signifi cant benefi ts with that child that, most likely, they will not Bob: I certainly hope so, because I’ve for people with autistic children. I hope this be able to handle and that will probably end moved past it. When I meet people, I’m pretty bill passes, because the areas we’re concerned up in some type of litigation with the parents. aggressive with them. If they want to help, I about are not controversial and would be given The school districts should be working with us suggest they stand up and be counted. If you’re the attention. But our goal is to see $1 billion ahead of time to develop special daycare pro- concerned about your child with autism, act, a year spent, between private and government grams, so when the children get into the edu- because the best thing is to be in front of the money, on science and treatment. cational environment, they’re better diagnosed cause and not behind it and hiding. Is it diffi cult to get corporate funding? and we know more about them so we can place Hollywood has been a very big disap- Bob: It is hard to get the corporate sponsor- them in appropriate classroom situations, which pointment on this issue, and there are a lot ships we need. One company that has jumped will make their lives at the elementary school of people who have positions of power in on the bandwagon and touts what a big suc- level a great deal easier. science, medicine, and business who are cess it has been for them is Toys“R”Us. Because Suzanne: If a child is fortunate enough not doing their share. I constantly look for their customers are mothers and their kids, the to get into one of the private schools, many folks like Duncan Niederauer, Mel have hundreds on the waiting list. I Karmazin, and Phil Geier – people was very fortunate to know Cardinal who stand up and recognize that Egan when the Diocese in New this has to be addressed. York was closing some schools. I The stigma is still there, but at the told him we needed a larger space more basic level of young people and for the McCarton School for children parents, it’s not there anymore. They with autism, which my grandson at- talk about it among themselves and tends. It took us a few years, but with their pediatricians – it’s not a bad now they have 30,000 square feet in word; it’s a condition that needs to be a 100-year-old school with fi ve sto- addressed. So we’re getting through, ries that is perfect for our children. but there are people who have a posi- But they still can’t take on many tion of power that are still a little bit more kids because they don’t yet on the hard-to-get game. have the infrastructure. They need Today when you’re having a therapists, speech pathologists, and child, there are mixed opinions occupational therapists. We’re trying on things like getting vaccines. Is to develop our resources, but in the the information being streamlined meantime, it’s a very diffi cult situa- enough where we’re getting a con- NBC News’ David Gregory, Bruce Springsteen, Suzanne Wright, Jerry Seinfeld, and Bob Wright tion for the parents. sensus on what is right? at the Fifth Concert for Autism Speaks at Carnegie Hall in Manhattan on November 17, 2009. Is it challenging to take the Bob: The vaccine schedule has The event, featuring performances by Seinfeld and Springsteen, raised nearly $1.7 million to time to appreciate the progress dramatically changed over the past support the work of the world’s largest autism science and advocacy organization. you’ve made, or is there so much fi fteen years. Our position is that left to do that you can’t look back? vaccines save lives, and we certainly believe salespeople and store managers have been very Bob: You have to. In business, you have in childhood vaccines. But parents have to appreciative of it, and we’ve raised quite a bit of to go back periodically and assess what you’ve be alert; every child is different and all the money working with them. There is no reason done in order to give yourself the energy to go vaccines are the same. People over 40 don’t why others can’t do this. forward. understand the number of vaccines being Has it been challenging as Autism Suzanne: We’re currently putting our fi ve- rushed into the under-two-year-old category. Speaks has grown to maintain that con- year anniversary synopsis together summariz- The American Academy of Pediatrics is rec- trol or have you had to broaden the reach ing what we’ve accomplished, and it will make ommending 34 vaccine injections from birth and grow the organization from a people everybody in our organization, as well as our to age 6, and many of these doses are given perspective? sponsors, feel very proud and energized to at the same time. This is compared to 15 years Bob: We have nearly 200 people full time, keep moving. ago when it was closer to fi fteen. Most people and we have thousands of volunteers. It is a Bob: If you don’t look back, you’re apt to who are now over the age of 50 did not re- challenge, as it is in any business, when you’re make the same mistake over and over again. ceive any vaccinations before they were two growing rapidly to make sure you’re being But I also think looking back invigorates you; years old. I always tell parents to use common as thoughtful and effi cient at spending your you can see that if we were able to accom- sense. If your child has any potential immune money as you were when you only had a few plish those things, we ought to be able to condition, then you should talk to your pedia- people. We have very good people, but there accomplish the goals we have in front of us. trician and ask to spread these vaccinations is always a tendency to become bureaucratic, So looking back and going forward go hand out over a longer period. and that can kill any organization, especially in hand. Initially, there was very little funding in a growth area. So we have to be effi cient, Suzanne: Our international involvement going into this cause. Is there a better un- but we can’t be rigid. We need people with has been a big plus for us. We have an agree- derstanding now of the type of dollars that passion who really want to see something ac- ment with Qatar, Albania, the Philippines, and are needed? complished, and we have to be very careful Ireland, and are working with Saudi Arabia. We Bob: We’re not there yet. We need to be as an organization that we don’t end up just worked with Qatar to encourage the United in a situation where we have a program with counting beans, because that doesn’t get any- Nations to establish World Autism Awareness a strategic plan that is spending somewhere thing done. Day, which is now celebrated annually on April in the neighborhood of $600 or $700 million Have there been any advancements 2. We’re declaring the Decade for Autism aware- dollars a year – that’s just on basic research. in education that are helping to create the ness and action with the goal of having coun- We need another chunk on treatments, espe- right environment for the kids? tries raise a combined total of $100 million to cially centers of excellence and things of that Bob: Some of the awkwardness here is that fund research and services in their countries to nature. So we’re trying to get there, but we institutions – and education is an institution – take autism on in a full-scale effort. Autism is have more work to do. President Bush signed tend not to look beyond their own gates. You a growing public health crisis, not only here, the Combating Autism Act in a Republican would think they would be our biggest partners but around the world. This devastating disorder Congress and President Obama has authorized because they’re the biggest benefi ciaries. If a knows no boundaries, and it doesn’t discrimi- an additional $116 million of NIH spending child is diagnosed in fi rst grade, which is far nate. It is going to take a global collaboration for autism as part of the stimulus plan, and later than they should be, the school district is to win this fi ght.• VOLUME 33, NUMBER 2 POSTED WITH PERMISSION. COPYRIGHT © 2010 LEADERS MAGAZINE, INC. LEADERS 37