The Wright family home
Nantucket, Massachusetts
August 15, 2015
It was a perfect Saturday afternoon for the birthday barbecue. Family and friends had gathered to celebrate the birthdays of our two oldest grandsons: Christian was turning 14 and Mattias 12. The children were playing in the pool under the watchful eye of a lifeguard while guests enjoyed grilled hot dogs, hamburgers, and roasted vegetables outside our cabana. Suzanne used an electronic megaphone to lead the singing of “Happy Birthday” over a double-layer sheet cake decorated with the logo and team colors of the Detroit Tigers—Mattias’s favorite team. Christian was oblivious to the bustle of activity around him, fixed mostly on the pure joy of jumping into the pool, with me and an aide by his side. That was birthday gift enough. Like most autistic children, he is attracted to water. Pool time gives us both freedom to connect and share smiles in ways that are otherwise difficult for Christian.
That morning, our entire family joined in the 9th annual Autism Speaks Walk on Nantucket’s Jetties Beach, raising awareness and nearly $440,000. Our children—Katie, Chris, and Maggie—their spouses, and our six young grandchildren are tirelessly supportive of our efforts. Honored guests and supporters included philanthropist Gordon Gund and three-time championship NCAA basketball coach Jim Calhoun. Local real estate investor Bruce Percelay donated Good Humor bars—served from his original Good Humor truck—which were handed out halfway through the nearly 2-mile walk. A Nantucket Fire Department truck flew the Autism Speaks flag from the top of its extended ladder. There were balloons and pinwheels, music and movement. It is the quintessential hometown event. In so many ways, Nantucket is home; we have been entwined with the community for nearly 4 decades.
You see the full gamut of autism at these annual walks: children and adults from all parts of the spectrum and families of every means gathered for the same reasons: support, unity, and a sense of hope. Some of the autistic children wear helmets in cycle chairs pushed by parents and siblings. Others walk as far as they can. They know it is a special day.
My grandson’s story is very sad. Christian is one of the severely autistic people who will never be able to be higher functioning without some kind of intervention—scientific or medical or even divine. We have tried them all. He has slipped from an infant to a toddler to a young boy to an adolescent. Next thing you know, he’s going to be an adult. He’s a big boy, and because of that size, he’ll become much more difficult to handle in the coming years. Our hope is that Christian will attend a well-regarded residential school where full-time services can help him to realize his full potential as an adult who will never live independently.
All parents of autistic children have this fear hanging over them as their children get older. Many of them now receive benefits under Medicaid, and the children get a lot of care until they’re 19 or 20. States have the ability to move it up a year or so, but it doesn’t go beyond age 21. After that, you’re on your own. It’s heartbreaking and scary.
The issue of adult care for autism is a huge, open-ended problem that has no immediate solution. Long-term, most states don’t have any effective legislation to aid this situation, even though some do really well. Mostly, it’s parents getting together to fund special care facilities. But that takes money, and without it, it’s unlikely they’re going to find much.
We created a section on our Autism Speaks website for autistic adults. We have pulled together a whole group of different organizations around the country devoted to caring for autistic adults. We’ve tried to position them into a much stronger force. Generally what that means is they try to exchange information with each other on their state guidelines, on governmental help and support, on medical support, and on social security and Medicaid benefits. We have had some success as an organized lobby for autism families. Our committee on adult care is the largest we have, and we are constantly putting together new materials and projects, because we can’t move fast enough in this area. We produced an excellent toolkit for parents focused on adult care and options. This will be a primary focus for Autism Speaks in the years ahead.
Although Autism Speaks provides more than $1 million in annual funding to existing resources and external organizations for autistic children who come of age, there is no legal framework to govern their care or needs. Unlike youth autism, there are no mandated individual educational plans for autistic adults. So, just as it has been with insurance reform, we will have to go state by state in pursuit of change. The burden essentially falls on each individual family, including ours, to figure things out for themselves.
For our Christian there are finite options. He has limited intellectual or emotional connection with anyone at this point. It is profoundly difficult to communicate. I’m not at all certain we have any clear path for him as he gets older. And I know all the other families face the same heartache. There are literally thousands of autistic children moving into adulthood—they estimate half a million by 2020. I just wish we could do more for Christian and others like him. I always will regret that we could not do more.
◆ Suzanne Wright. It’s hard to believe that Christian is a teenager now. He’s as tall as me. But he is pretty disabled. I would say he’s on the very serious side of autism. I don’t know what the future is for him right now other than all the therapy he has, and all the love he has. I wish I could see the future for him, but then again, maybe I don’t want to see it.
It’s very difficult to communicate with Christian because he doesn’t speak. When he wants to eat or do something, he points to pictures on a touch screen tablet. It’s pretty hard to give him kisses and hugs, but I do, and when he sees me he knows who I am. Every once in a while he’ll come over and just tap me on the shoulder or rub my back or squeeze or pinch me. It’s his way of letting me know that he knows who I am and why we’re together. Those little signs of affection tell me that he really knows that I’m his grandmother and that I love him very much. So there can be very sweet moments. He is such a wonderful boy, and I marvel at how he shares love in so many different ways.
I think that he understands, on some level, what we’ve been doing with Autism Speaks. I always tell him how much I love him and how he is changing the world and making a difference in autism, and he sometimes smiles. And that makes me think that he does understand what we’re doing.
At the same time, he also can have a meltdown, and that makes me feel sad and helpless. He will be screaming and hitting himself, and I won’t know how to help him. That is the worst. I cannot believe my poor daughter and how she tries to calm him down and help him. It’s just a nightmare to see that. It is really shocking and horrible to see a big boy, a teenager, screaming and hitting himself. Katie holds his hands, but she is smaller than Christian. Because he is getting big physically, his daddy, Andreas, has to sit on his lap to hold him down. It’s extremely hard to watch. Andreas is always by his side, anticipating and meeting his needs and giving him support and love.
Even though we work with autistic children and families all the time, it’s heart-wrenching to watch your own grandson go through those motions now as a young man. Most teenagers scream and yell because they don’t like what their rules are. Now we have a teenager who maybe does not like something but can’t express to us what that is or what he wants or how to make him happy. We all live for the moments when Christian seems happy. My daughter Katie will say, “He’s happy. I’m exhausted, but he’s happy.”
One thing we always have to remember is the other children in these families. It can be very hard on siblings. That is why we worked for 7 years with our partners at the Sesame Street Workshop to create Julia, representing all those with autism, for all members of a young family struggling to understand and accept. Making her debut in late 2015, Julia is only 1 of 5 Muppets with disabilities in Sesame Street’s 45-year history. These siblings are rock stars in their own right. Christian’s younger brother, Mattias, is like an only child. He is always there to support and love his brother. But he is pretty much on his own path. If it’s handled right, it certainly can be positive. Most of the parents of autistic children I have met are so proud of their non-autistic children because they really have a full range of compassion, something most kids really don’t have, especially at a young age. Mattias always thinks of Christian first. It’s heartwarming to see how fully he understands as he gets older that his brother needs to be protected.
By the same token, the siblings need to be protected. I asked my daughter, Katie, if I could create a special place for only Mattias and his friends when they come over, since the entire house is otherwise dedicated to Christian’s therapy and care. We redecorated Mattias’ bedroom—an autism-free zone—with a soccer theme. We didn’t make a big deal out of it, but it is a safe place where Mattias can celebrate who he is. Now Mattias has a place in the family home where only he and his friends can visit. And he is so happy to have that.
I hope to God that when we get an adult transition plan, Christian will be able to have dignity and have a job someday doing something fulfilling. But it’s very hard for me to put that telescope out there and look into the future, because the future for me with him is now.
All of our special loved ones with autism remind me of a quote from one of my favorite movies, The Imitation Game. “Sometimes it’s the very people who no one imagines anything of—who do the things no one can imagine.” ◆
October 29, 2015 was the worst day of my life. My love, Suzanne, was diagnosed with pancreatic cancer. She is the healthiest member of our family. She has no family history of cancer, much less pancreatic cancer. We all are doing everything we can to treat her condition and make every day enjoyable. Suzanne and I have been together for 50 years! The Lord is our Shepherd.
This tragic revelation came out of nowhere after weeks of Suzanne suffering through what we thought was a stomach infection. The first few days were devastating; we were overwhelmed with grief. Within 2 weeks we had a chemotherapy treatment plan in place at Sloan-Kettering.
Drawing on the amazing inner strength and faith she had used to lead our family through many crises, Suzanne courageously moved forward. She was buoyed by the outpouring of well wishes and love from family, friends, and so many people she had touched but didn’t know personally. The handwritten cards especially made her smile. We shared times of tearful desperation, and other times of side-splitting laughter—remembering all the good times we had been blessed to know right down to when our dog swallowed the children’s goldfish and the cat had its litter in my closet inside my shoes!
Our family always included pets, so it was not surprising when Suzanne almost immediately decided the time was right for us to get a dog that our grandchildren would look forward to playing with when they visited, and that would be good company for us through our ordeal. She named the teddy bear poodle Happy. Our children and grandchildren picked up Happy from the breeder to bring him home the first weekend in December when we hosted our annual family get-together at the River Café in Brooklyn with the magnificent Manhattan skyline as a backdrop. We had done this for years to kick off the holiday season with our children, grandchildren, and extended family. This was home; this was tradition, and Suzanne was not about to depart from it for any reason before we would head south for the winter, like snow birds, for our little piece of paradise in Palm Beach, Florida.
◆ Michael Rosen. There have been tears and disbelief among the Autism Speaks staff about Suzanne’s illness, and because of who she is, there is hope that if anyone can beat pancreatic cancer—she can. People would not know autism were it not for Suzanne Wright. It’s not a cliché to say she has changed the world when you think of World Autism Awareness Day, World Focus on Autism, the unanimous vote at the United Nations and Light It Up Blue. Even as the organization the Wrights built is undergoing major change with new leadership, their partnership remains triumphant. Not bad for a cop’s kid from the Bronx who made her husband a better man and better businessman, and through the sheer force of will changed the world for 70 million people. ◆
◆ Liz Feld. I was at the Wright’s New York apartment November 18th in the late afternoon. Suzanne and I sat at the dining room table and talked about a whole lot of things—personal and work. I had sat with her at her recent chemo treatment and she looked good. Then she brought out a birthday cake for me—imagine that. We sat in the living room with Bob, and I have never seen them laugh harder. They were finishing each other’s sentences, telling stories about everything from midnight parties at NBC to life with kids and goldfish.
It was wonderful to see. There is a tenderness to their relationship that doesn’t always come across in more public formal settings. I think they are more reserved that way. Their love is so strong and soft at the same time. And what comes with that love is a deep respect.
They are like one unit. It’s the two of them facing the world and facing everything together. Their faith is obviously at the root of all they do, and the root of their love. They don’t take anything for granted in the relationship. She will talk about him every day like there is a new discovery in how smart he is, or how thoughtful, and it is authentic. They marvel at each other. When Suzanne stands at a podium to speak, Bob is so proud of her and the way she can capture people’s attention, passion, and imagination and harness it. And she’s the same way about him. No matter how many times she hears him give a speech, she mouths the words in agreement and smiles. She’s so loyal, not just defending Bob but promoting him. She wants to be sure people see the best of him.
We all have a race to run. Suzanne’s race has been a sprint, and their race with Autism Speaks has been a sprint. And now there’s no more sprint. I think the most unnatural thing for them now is how everything just stopped at once—Bob’s leadership transition from chairman and then Suzanne’s cancer diagnosis. For two people who have given so much of themselves to others to now be facing a clock is bittersweet. When I joined Autism Speaks in January 2012, Bob had already been talking about stepping back.
Then he realized instead he would have to reengage in the business. Suzanne, on the other hand, wasn’t slowing down at all. In fact, she was in high gear expanding Light It Up Blue and being a driving force behind MSSNG. Few on the Autism Speaks board seemed to appreciate Bob’s vision for the project, but Suzanne gave him so much energy and reinforcement to see it through. She didn’t feel their work was done yet.
Now, Suzanne recognizes her mortality. She cannot save and control everything that goes on, and external forces have required her to let go. Her faith has allowed her to handle that. The Autism Speaks they built is not what Autism Speaks will be going forward. And that’s what happens in business, especially with founders. Bob knows that and he warned that the second ten years would be harder than the first ten years. He knows leadership transition is tough, no matter who, or what, the circumstances.
But the Wrights’ legacy is set. Someone once told me, “while the whole world was asleep, Suzanne put autism on the map.” Nobody going forward will have the same impact, but others will do big things. Bob wants to pass the baton believing that. Bob and Suzanne are believers. They started Autism Speaks because they believe positive change can happen. And they were right. ◆
Plans were made by Autism Speaks and New York Collaborates for Autism, co-founded by Laura and Harry Slatkin, for a tribute to Suzanne. The dinner on February 5, 2016 at the opulent Flagler Museum in Palm Beach raised $3.5 million for both groups. Suzanne was presented with a Lifetime Achievement Award along with a leather-bound case filled with notes and letters from friends and supporters. With a $1 million gift from our old friend Bernie Marcus, the Forever Blue campaign was launched memorializing Suzanne’s leadership and Autism Speaks’ enduring commitment to global awareness. Suzanne was already steeped in cards and tokens from well-wishers spread out over our kitchen table. She continuously worked on hand-written responses in the bold round cursive that was her signature.
“I am acutely aware I am just a conspicuous member of a bigger team, a family that has faced challenges and chosen to fight them head on,” Suzanne said to those attending. “In some ways my battle to help people with autism has prepared me for this fierce fight with pancreatic cancer. Every one of life’s challenges provides us with a new opportunity to make a difference. ”
Suzanne surprised everyone that night with her inner strength. She planned to return to New York with me in the spring for the annual events she forged beginning with Autism Awareness Day at the United Nations April 1 and Light it Up Blue at the Empire State Building April 2. But not before we gathered our children and grandchildren for our traditional spring break trip which this year would be Suzanne’s favorite pastime, an adventure at sea.
Most dear to us were the times our three children, their spouses, and our six grandchildren huddled to be as close to each other as possible. The 14 of us spent 8 days between Christmas and New Year’s in Palm Beach sharing meals, swimming in our pool, taking golf and tennis lessons, and playing with our new puppy, Happy—the star of the show and Suzanne’s best buddy. We have six family birthdays in December including Suzanne, Katie, and Chris, so it has always been a magical time of year for us. We dressed up in our best clothes for a Christmas Party at a nearby club. The grandchildren entertained us with talk of their school, friends, and sports participation, and showcasing their talents: from playing guitar to reciting their own poetry. When Christian inevitably had a difficult moment, even the youngest of our family knew to show him compassion and support.
As difficult as it has been, autism and cancer have brought our family to a higher level of love and acceptance than we otherwise would have known. Suzanne was involved every day in as many of the family activities as she had the strength to do and loved it. There were gifts going in all directions—some humorous and others more thoughtful—but not as much as in years past. This was all about being with Suzanne, and Suzanne being with her family.
When the children and grandchildren left, Suzanne and I spent as much time as we could together around the ebb and flow and exhaustion from her treatments. Even with nurses flying by me every day, I doted on her every need. Suzanne was pretty remarkable with it, but her response to the strong chemo was unpredictable; she would be in fine spirits and within minutes it would turn on her. Pancreatic cancer was like autism when we first confronted it; no significant funding or research. No one knows how to deal with it. Professionals are overwhelmed by it because it is just too difficult. It has a 93.5% mortality rate.
There is nothing I can do and she knows that. So we cling tight and just do the best we can. We never completely move past the shock and disbelief, but we resolve to live every day to its fullest. We would try to get out of the house every day for lunch. We lingered a little longer over every glance and conversation and simple task. When the weather was nice and Suzanne was up to it, we would take the boat out in the late afternoon to find a moment of peace and watch the sunset.
It was something we both looked forward to.
◆ All the years I have known Bob Wright, he has been fighting the good fight.
I met Bob Wright when he was President of NBC, and I was Chairman of Interpublic Group, the largest advertising group at the time. We got to know each other in the mid-90’s when Congress was considering taxing advertising. For us, it was a freedom of speech issue, and he represented the media while I represented the advertising industry in the fight against Washington. We also had a representative from the client companies, but Bob and I basically led the fight. With Bob’s help, we got the local TV stations in the various markets where the Congressmen were situated to push the issue hard, which eventually helped win the battle.
One day while I was visiting him in his office, Bob shared his grandson’s autism diagnosis. I was well aware of the issue through my daughter’s good friend, Kevin Murray, whose organization for autism in Long Island was trying to find a way to expand nationally. Bob told me he wanted to bring together all of the small groups throughout the US under one roof in order to share information and raise more awareness and support. Although I had no personal experience with autism, I gladly offered my help realizing the breadth of this very different fight.
One of our small marketing consulting agencies at IPG worked with Bob and Suzanne on the original approach and Autism Speaks logo—the now famous blue puzzle piece. I appealed to the Advertising Council which provided $30 million in time that initial year for Autism Speaks’ awareness campaign—and its support has continued for 10 years.
Through Bob and Suzanne’s singular efforts and leadership much positive change has been initiated over the years through Autism Speaks. Bob not only successfully developed a strong network at NBC, eventually becoming Vice Chairman of GE, but also founded and built an extremely successful nonprofit, which helps thousands of children worldwide. Much of Bob’s success has been rooted in his unique partnership with Suzanne. They have been a very special team, supporting each other in both the business and non-profit worlds.
Now, they remain by each other’s side, united in yet another fight as Suzanne battles pancreatic cancer. There is no better fighter than Suzanne; there is no more formidable match than the two of them working together. If there is a chance to win this fight, they will make it happen. Theirs is most definitely the Wright stuff! ◆