August 31, 2001, when our first grandchild was born, was one of the happiest days of my life.
OK. That’s just about the lamest, corniest cliché in the English language. Doesn’t make it any less true. From our oldest daughter, Katie, and her husband, Andreas, this beautiful little boy came into our world.
We had no way to know it at the time, of course, but soon this same beautiful child would profoundly change our lives. And in response, I would take everything I had learned about running a business in nearly 40 years and pour it all into a not-for-profit organization born from heartbreak. That labor of love, developed with my wife of 48 years, Suzanne, is Autism Speaks.
From the very beginning, Christian put a little drama into our lives. My daughter Katie had gone to her obstetrician for what she thought was a regular checkup several weeks before the baby was due, but the doctor discovered her amniotic fluid was low and decided to deliver by cesarean that same day. So with nothing but the clothes on her back, off she went to Columbia Presbyterian Hospital in New York. I imagine a young woman would want her mother with her at a time like that, but Suzanne was not in town, so poor Katie was stuck with me.
◆ Katie Wright. I’d always imagined my mom would be there for the birth, but she was in Nantucket and she wasn’t going to be back in time. But who was in New York? My dad and my grandmother, Ruth.
I think my dad was nervous, but he kept it under control. He spent a lot of time on the phone with my mom, who was very upset she couldn’t be there, and then with his assistant, trying to arrange flight information for Mom, cancel other appointments, call everybody else and tell them what’s happening, do this, then this, then this. I’m sure if it was a movie, it would have been a funny scene. And it’s the Friday before Labor Day, which complicated everything, but he’s so on top of things, getting everyone in place, doing what he does best. And all the while, Ruth was sitting there quietly. Ruth had had four kids. And she was saying, “Don’t worry. It will be fine.”
And it was. Christian was the most beautiful little baby. He looked like a little angel, with beautiful pink skin and lots of blond, curly hair and big blue eyes.
By the time Mom rushed in, it was all over. She was so excited, she was just bubbling: “I got to see the baby. I got to hold the baby.” And she was just so happy. ◆
◆ Suzanne Wright. I remember thinking, I’m looking at my first grandson and how lucky we were that my mother was there. He had a great-grandmother, he had a grandmother and a grandfather, and we were all there, to welcome this beautiful little boy. It’s natural for new mothers and grandmothers to think their babies are beautiful. But everyone who saw Christian described him as a beautiful, healthy baby. Everything seemed so normal.
Katie and Andreas stayed with us at first because the baby was born 2 weeks early and their new house wasn’t ready yet. But that was just so exciting because I now had him for breakfast, lunch, and dinner. I could hardly wait to hold a baby again.
Sometimes I would go in the room and just watch him. Bob did the same thing. I loved watching him holding the baby and looking at him with such delight. In those first 2 weeks babies open up their eyes, and you could see him looking around and wondering what this world was all about. I’m pretty spiritual, and it seemed like a first awakening. I had a small bottle of holy water that a friend had brought back from Fatima, and I would bless him with it. And every night when I said my prayers, I would say, God, please protect him.
I remember when my own babies were little, I would count their toes. Ten toes, everything is fine, just what it should be. But you never know what’s down the road. ◆
In the first months, Christian’s development matched expectations. At well-baby checkups, doctors noted that he was very animated, smiling often, had good eye contact, was learning to sit up at the appropriate time. In some respects, especially language, he was even ahead, babbling at 6 months, speaking single words at 10 months. And his social development was right on track too; he clearly loved being with his parents and grandparents. Suzanne developed a particularly close bond with the baby. Even as an infant, Christian lit up with excitement whenever he saw her; by the time he began to walk, he would run to jump into her arms the minute she came through the door.
Today, talking about Christian’s first year, we all use the word “normal” often. I recall giving him a bath in the kitchen sink, with lots of tickling and giggling. Having fun on the playground, playing peekaboo with his grandmother, normal games like that.
It only gradually became clear that everything was not normal.
Before he was even a year old, Christian began to show signs of trouble. Something was always off. Either it was bouts of severe diarrhea, or high temperatures, or terrible eczema all over his body. Right after he got the standard 1-year vaccinations, he developed a very high fever and screamed for hours. Katie was so frightened she called her husband to come home from work, and they put the baby in an ice bath to bring down the fever. When they called the doctor, they were told the reaction was completely normal.
Looking back, it seems we heard that over and over from doctors: “It’s nothing to worry about; he’ll be fine.” I can hardly bear to think about it.
Soon after Christian’s first birthday, his condition started deteriorating. He was sick a lot and would sometimes start screaming for no obvious reason. We could see he was clearly slipping backward. Suzanne was distraught. He used to rush up to her babbling “I love you, love you,” but now when she came to visit he would run away, hide under the table, and begin a screaming tantrum.
◆ Suzanne Wright. He didn’t want to play, he wouldn’t let me hug him, he wouldn’t let me comb his hair. I couldn’t engage him at all. And then he started slapping himself and walking around on his toes. I didn’t have a clue, but in my heart of hearts, I knew something was very wrong.
At first I was really angry. I couldn’t imagine how this was happening. Then I went to grief. Then I really felt very sorry for myself that this is happening to our family. And then I had to stop the feeling of constant sorrowing and grief because I had to get stronger in order to really face what was about to happen. I said the same prayer over and over: God, you’ve got to help me with this. ◆
We had absolutely no idea what was happening or where to turn for answers. Then things got profoundly worse.
Starting when he was about 18 months old, Christian was sick all the time. He had a staph infection so severe he had to be hospitalized; he had strep throat twice, pneumonia, frequent high fevers, cellulitis in both eyes, unrelenting diarrhea, and severe rashes. His toes turned red and swollen, and he had red streaks up both legs. All this meant an endless round of doctor visits.
His behavior changed, too. He became moody and withdrawn and extremely anxious. At a time when most babies grow out of stranger anxiety, Christian was getting worse. He would cling tightly to his mother, screamed when other people touched him. During medical checkups, he cried nonstop. He had difficulty sleeping, would cry all night long. His speech patterns deteriorated; he would repeat words over and over, or he would stop talking altogether. We were rapidly losing him.
No one could explain what was happening to this child. Doctors couldn’t find any physical problems and just kept saying he was fine. Katie told me at one point she felt like shouting, “You think he’s fine?! You weren’t in the car with me on the way home from the pediatrician’s office; it’s a three-mile drive and I had to pull over four times because Christian was screaming so strangely I thought he was dying.”
Christian was in free fall. He couldn’t recognize any of us. He couldn’t communicate in any way we could understand. This was a boy who’d had a very large vocabulary only 6 months earlier. And he could run, catch, throw, do things like that. All of a sudden all of those things were gone. He couldn’t respond to your questions. He couldn’t offer any comments. He couldn’t look you in the eye. Over a span of about 8 weeks, he lost everything. And I mean everything.
He wasn’t that child anymore. He was gone.
Soon afterward, desperate for answers, Katie managed to get an appointment with a developmental pediatrician. As part of the examination, this pediatrician asked Katie a number of very specific questions. At home that evening, Katie began replaying those questions in her mind. Because she has a Masters of Education degree in counseling, Katie had in her home library a copy of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), which clinicians and psychiatrists use to diagnose psychiatric illnesses. She pulled it out.
◆ Katie Wright. As I worked my way through the DSM-5, I realized that all the pediatrician’s questions were about autism. I threw up. I knew she was right.
But I had to be sure. So I called her office the next day and finally got her. “Katie,” she said, “you know I can’t talk about this on the phone.”
“If you don’t talk to me, I’m going to explode.”
“Yes,” the doctor finally admitted, “that’s what I’m talking about. Autism.”
OK, I thought to myself. This is bad, but the doctors will know exactly what to do and we’ll do it. We’ll do everything they say and it will get better.
But first we had to get a complete diagnosis. Poor Christian went through 2 full days of tests by a whole team of specialists, including a child psychiatrist, a neurologist, a pediatric gastroenterologist, a radiologist, and several others. And all the time we were in the waiting room, me and my mom and dad, I was thinking, “They’re going to be able to help us; now we’ll know what it is and then we can start fixing it.” And then the team came into the room. They began by explaining what they had eliminated: he doesn’t have a brain tumor, he doesn’t have cancer, he doesn’t have any medical condition we can find. Instead, they say, he has PDD-NOS.
And my mom asked, “What on earth is that?”
“It stands for pervasive developmental disorder not otherwise specified.”
“But what does it mean?”
“It’s autism,” they said.
“Well, why didn’t you say autism?”
They don’t want to say the A word. They don’t want to say it because it scares everybody. ◆
It quickly became apparent that the team of doctors could offer little help. We all use different words to describe it, but we all remember the same thing.
They were very apologetic, but there really wasn’t any plan of action that they would outline for him—except for us to seek help on our own: speech therapy, occupation therapy, behavior therapy.
As Suzanne put it, “They gave us the diagnosis and basically said good-bye and good luck.”
Christian, meanwhile, was disintegrating. By the time he was 2½, he began hitting himself, banging his head against the wall, biting his shirt. He screamed all night long and drooled so constantly and so copiously that his shirt collar was always wet by noon. Doctors prescribed steroids to counteract inflammation, but they made him very aggressive toward his baby brother, 2 years younger. An adult always had to be present, otherwise Christian would bite his brother and pull his hair. And the high fevers, red rashes covering his entire body, and fierce diarrhea never stopped.
While everyone was still reeling, still scrambling to figure out the next step, we had a chance to enjoy a family vacation in Florida. It was here that we experienced what Katie still calls the worst day of her life.
◆ Katie Wright. It was March 2004. Andreas and I and our two boys were visiting my parents in Florida. Christian was 2½ and Mattias was still an infant. The first day we were there, Christian was hyperactive, running around in circles and knocking things off tables. But on the second morning, he was very different when he woke up—listless and unfocused and highly irritable. There was no fever, no obvious symptoms, but he just seemed very sick.
Andreas had planned to spend the day golfing with my dad, but now he wondered if he should cancel. No, we all said, go ahead; you need a break, we’ll be fine. So Mom and I decided to take Christian to play on the beach, something he very much loved to do, hoping that this would snap him out of the mysterious fog.
On the way toward the beach, I suddenly noticed something very frightening. Christian’s face and one side of his body had gone slack, his tongue was hanging out, he was drooling. It almost seemed like he was having a stroke, but then we figured that couldn’t be right because he was still standing upright. So we decided to keep going. Christian loved the beach, and I was hoping he would snap out of it in those happy surroundings.
But he didn’t. He was like a living, walking ghost. I tried snapping my fingers in front of his face but got no reaction. His tongue was hanging out of his mouth and his shirt was soaked with drool. I was holding him so tight, crying hysterically, trying not to throw up.
We went back to the house as quickly as we could and tried to feed Christian, hoping that might bring him around. It didn’t help. He walked around and around in circles, drooling, not saying a word. We had no idea what to do. I called his doctors at Columbia Hospital and they told me I was overreacting. Give it a day and things will be fine, they said. Don’t worry, they said.
In the late afternoon, when the men returned from golfing, Christian was still the same. Andreas kept trying to connect with him, offering his favorite toys and reading to him from a familiar storybook. But Christian would not say a word, just stared in that frozen, catatonic way. Finally Andreas sat on the couch next to Christian and sobbed. I had never seen him cry like that before, nor since.
Then my dad put his hand on my shoulder and said, “Let’s go for a ride, honey.” ◆
I have never felt so helpless. This precious boy, our first grandson, was disappearing before our very eyes. Katie and Andreas were falling apart, and I didn’t know how to help them. But at the moment, all I could think was that we needed some fresh air.
So we climbed into the car and rode around for nearly an hour. Usually Katie would be teasing me about that car, saying convertibles are for younger men, but this time she just sat quietly and looked at the sky. She seemed almost numb. After a while we stopped and walked for a bit. I tried to find some words of comfort, but all I could think to do was say out loud what was in my heart: That I knew things seemed awful but that we would get through it. That I would always be proud that Christian was my grandson. That no matter what, Suzanne and I would always take care of him.
It seems almost impossible now, when I think of it, but at almost the exact same period of time, I was engineering the most significant business deal of my entire career: the merger between NBC and Vivendi Universal, an incredibly complex arrangement that ultimately saved both companies.
And shortly after that, I first heard the name Bernie Marcus. His visit in July planted the seed that became Autism Speaks.
2004 was a year of extraordinary highs and lows.