The cover of the April, 2005, issue of Spectrum magazine features an interview with Autism Speaks co-founders Bob and Suzanne Wright. In it, they tell the story of what prompted them to start the organization, and their hopes for progress in addressing the disorder. The full text of the story appears below. Click here to visit the Spectrum site.
After Bob Wright, Chairman and CEO of NBC Universal, received the news that his grandson was autistic, he took action, creating Autism Speaks and influencing the network to produce a monumental series of reports on autism.
from Spectrum Magazine
By Cris Italia/Photos by Robert Milazzo
The autism community had been waiting what seemed a lifetime for this. Until now the statistics surrounding autism had made it the number one growing developmental disability in the country. You've heard and seen the staggering figures. One in 166 children diagnosed, 1.7 million individuals living with autism throughout the United States. You can't ignore the enormity of what has become known as a silent epidemic. So where is the help?
While school districts are scrambling for ways to treat autism, doctors are delaying diagnosis and our government only dedicated a small portion of their annual budget to research, where can parents turn? Recently autism has popped up in the media, making headlines in some major publications, but for an epidemic growing at an alarming rate, the autism community wondered where was the mass attention? When would autism become not just a concern of theirs, but something everyone would, and should, know and understand?
From February 19 through the 25, the autism community finally got their wish. The National Broadcasting Company (NBC) aired a series of reports titled, Autism: The Hidden Epidemic? Unfortunately the series came with a price. Almost a year before the NBC series would air, Bob Wright, the Chairman and CEO of NBC Universal received devastating news; his grandson Christian was diagnosed with autism.
"You never want it to be for that reason," said John Shestak, Co-Founder of Cure Autism Now, at a recent event. "You're excited about how this might help our cause and how their efforts will be instrumental, but the news of their grandson is one of sadness." For the Wright family, it took three months before they were ready to begin talking about their grandson publicly. Bob and his wife Suzanne admit for a family with their resources, it became extremely frustrating to find out that there was little they could do for their eldest grandchild in terms of immediate recovery. Just as the series launched in late February, the Wright family announced the formation of Autism Speaks, an organization that would act as a guide for parents seeking information and as a terminal that would lead to other organizations that specialized in research, networking, early intervention and awareness.
Now Autism Speaks is on the verge of doing what no organization has been able to do before. It's a March afternoon at the NBC offices in New York City. Suzanne Wright is preparing for Autism Awareness Month, she's just finished explaining how she read Evidence of Harm, written by David Kirby. The book explains the vaccine theory that has been criticized and dismissed by the Institute of Medicine. A theory that the Wrights have given thought to, but will continue to research before making any decision on what to believe. At this moment, their main concern is awareness and making sure that parents know that Autism Speaks will fight for them.
"We were frozen for about the first three months after our grandson was born," Suzanne Wright said. "We were frantically looking around the country in hopes of finding help for Christian. I talked to my daughter about maybe doing something with NBC and they actually came to us and told us this was a good story, but I had to ask my daughter if this is what she wanted and it was something she had to think about, because it's a difficult thing to accept that your child has autism."
Suzanne can't help but become emotional when talking about her daughter's decision. Her bravery has been well documented, but because of their notoriety, her daughter and son-in-law's identities have been held from the public. "It's just a lot to deal with," Suzanne says emotionally. "I am so grateful to their bravery and courage through all of this."
The Wrights' story is like so many others. Christian was a charismatic baby who displayed a lot of emotion around his family, but suddenly there were changes in his speech and behavior. Noticing the change, his parents were alarmed and expressed their concerns with the child's doctor, who told them that their child was just developing slowly and to give it more time. In a letter Suzanne Wright read on NBC's Today Show from her daughter, she explains how the six months that passed before his eventual diagnosis is one of her biggest regrets.
Suzanne Wright read her letter to viewers, "I knew that something was wrong with my son when he was two. My doctor told me that everything was fine. I just needed to give him more time. Trusting this advice was the biggest mistake of my life. Six months later we got the official diagnosis of autism. By then our happy little boy was gone. He lost his little rascal streak, he lost his sense of fun and the ability to run into my arms and say 'mommy.' We will never know how much we lost in those six months. Nothing is more important than an early diagnosis. Know the signs and don't let anyone tell you not to worry. Remember 1 in 166, that one could be your child just like it was ours."
Even after the doctor's advice, the Wrights knew there was something wrong. "Most mothers know that something is wrong," Suzanne Wright said. "When he stopped talking to me, I couldn't let that happen. I refused to let him do that and I was really in his face. I was doing ABA (Applied Behavior Analysis) before I even knew what it was." The search for a diagnosis would lead them to a psychologist who agreed that there was certainly something wrong with Christian emotionally. With that the Wrights took him to Columbia where their fears were eventually be confirmed.
As NBC aired each part of their series throughout their stations which included NBC, MSNBC, CNBC, and Telemondo, the Wright family watched with pride having only getting glimpses before the series hit the airwaves. "I was just very proud of the work," Bob Wright said. "You have no idea how hard it is to do what they did. We had some extraordinary producers. They all took different tactics. I thought it was very thorough." The NBC chairman admits that while he feels the series tilted towards children and did not address the issues of adults with autism, the series was very effective. "We didn't show enough adults and one of the reasons for that is that for the Today Show, they are trying to deal with their audience which is made up of a lot of mothers," Bob Wright said. "At the same time I'm trying to deal with young mothers and trying to get people who have young children, or are about to have children, to be aware of the series and be fully informed."
"I think any use of the word [on television], even if it's not in the best possible light, is important when you are trying to draw awareness," Bob Wright said. "Clearly awareness is a major problem, because you can't possibly have a disease that strikes 1 in 166 and have no federal money going against it. That just screams no awareness. Getting people comfortable and understanding what this is and recognizing it, is what's important." "This fits the definition of an epidemic," Bob Wright said. "This does fit the CDC's (Center for Disease Control) definition. I think there is a lot of hesitation to give the appearance of causing a stampede at a family's pediatrician, but they aren't doing any studies on it! It's sort of hard to say that there is an epidemic going on and then a Congress member will ask, 'well how much money have you allocated to it' and the answer will be very little if any."
So how will the Wrights and Autism Speaks attack government funding? "I'm going to call on politicians and ask them to be supportive," Bob Wright said. "There are a number who have already put a lot of work and effort, but we want to try to get them to have others join them."
For a time, Suzanne Wright wondered why parents weren't just storming Washington for answers. If this was such a devastating disability for everyone in a family, why wouldn't parents be more active when it came to political awareness? "A doctor told me simply 'because they just don't have time. They are too busy taking care of their children, they are busy paying for it and they don't have time to organize and do something' and I thought that was pretty sad," said the Autism Speaks Co-Founder. "Our hope is that we can get organizations like NAAR (National Alliance for Autism Research) and CAN, we already have the Autism Coalition, together and have a strong voice. [The government] cannot ignore us. I will not be ignored. Like it or not I'm going to be down there with all this backing."
With a 25 to 28 billion dollar budget, the National Institute of Medicine dedicates less than a 100 million dollars of those funds to autism research. That's a number the Wrights say is minute considering the staggering rise of autism. While most elected officials admit that it will be unlikely to see an immediate significant increase in government funding the Wrights do not rule it out.
"We have to lobby in Congress to get an allocation of funds," Bob Wright said. "There is an entitlement problem here. With a disease that is the most prevalent for children in this country and there is no money there for it, where is our entitlement? So it's not impossible, it's merely a question of reallocation. What they are really saying is that politicians and scientists hate reprioritization. They want to have every program kept in place, but that's not the way to run anything. You have to reprioritize and give autism its fair share of funds."
Upon hearing their story, Bernie Marcus, the Co-Founder of Home Depot and chairman of the Marcus foundation, generously donated 25 million dollars to Autism Speaks. Large contributions came from several other supporters, a clear message that people were on board. Autism Speaks would be the voice of parents who can't speak up for their children.
"Autism is finally speaking," Suzanne Wright said. "Now the world will listen." "Be loud, be brash, be emotional, be angry," added Bob Wright.
"Don't accept it," Suzanne Wright said. "We are going to need a lot of angry parents, because we are going to have that march."