Living with autism: A father's storyApril 14, 2010: 11:51 AM ET
April is National Autism Awareness Month--the time to talk about a disability that affects one in every 110 births in the U.S. and almost 1 in 70 boys. The lifetime cost of caring for a child with autism: $3.5 to $5 million, according to The Autism Society. But all the money in the world doesn't make dealing with autism easy. Here is one man's story about how his son's autism changed his life. In 1992, Harry Slatkin left Wall Street to start a business--home fragrances and candles, of all things. He sold the business to Limited Brands (LTD) in 2005 and since then has used his money and his power for the good of the cause.
Guest Post by Harry Slatkin, President of Slatkin & Co., and President of Home Design, Limited Brands
I have ten-year-old twins, David and Alexandra. When my son was 18 months old, he was diagnosed with autism. It rocked my world.
I'd always felt as if I had control over almost every aspect of my life, and especially my business life. But after spending hours reading about autism on the Internet that first day, I was silent and I was scared.
My wife, Laura, had been traveling on business in Texas. I had to break the news to her that night when she arrived home. We cried ourselves to sleep in each others' arms, knowing that our lives would never be the same and that our son's life would be a battle.
The next day, Laura decided to get every book, paper, and anything else she could get her hands on that had been written about autism. We learned the different degrees of autism spectrum disorders from Asperger to autism and all that lies in between. We read things that I wish we hadn't. Too much information can sometimes be a hazard--like knowing that some children smear and/or eat their feces or have wild tantrums. It went on and on.
I would wait to see if those moments would happen.
And over time, of course, they did.
Although nine years ago, autism wasn't in the press very often, Time had published the first major cover story, and it was about the Yale Child Study Center specializing in autism. The first doctor we reached out to was Dr. Fred Volkmar at Yale Center, and when we called, we were told it would be a two-year wait. We have a friend on the board of Yale, so we got in to see Dr. Volkmar the next week.
Hearing about that two-year wait was such an "aha" moment for us, though, that we needed to do something. So with the same fervor that helped us start our business, we created a foundation to combat autism. We started the New York Center for Autism (NYCA), the first charter school for autism in New York State. Then we funded a program at Hunter College to train public-school teachers about autism. At the time, all "special needs" children were being lumped together in the educational system, and we knew that with autism, it's crucial to begin working with the child as early as possible.
Both Mayor Bloomberg and School Chancellor Joel Klein were amazing. They said yes to us from the start.
Today, my wife and I sit on numerous boards, including Autism Speaks (autismspeaks.org). We recently signed an agreement with New York-Presbyterian Hospital, Columbia University and Weill Cornell Medical College to build a major medical facility on 214 acres in Westchester that will be dedicated to autism research and the study of the brain.
We travel the world and visit autism sites, speaking with families in need of help and answers. My company, Limited Brands, has been extraordinary. Three years ago, the company, along with White Castle, co-sponsored the first Autism Speaks walk in Columbus, Ohio. We got the President of Ohio State, Dr. Gordon Gee, to commit to creating a major autism facility on campus. And at last year's walk, which drew 15,000 people and raised $763,000, we got the Governor of Ohio to commit--live on NBC at the finish line--to fight for insurance reimbursement. So many companies, including Home Depot (HD) and Toys "R" Us, have joined the fight. Toys "R" Us has started a training program for adults with autism to work in its warehouses. These employees have higher productivity than other workers.
My son no longer lives with us, as it became just too difficult for him. He is on the severe side of the autism spectrum. The school we chose for him, The New England Center, has made David happy. He's learning and he comes home often. We love him deeply.
Autism has forced me to learn a great deal about the results that can come from total commitment and hard work. Nine years ago, I could never have imagined that one day, my wife and I would be having medical discussions at the level we are. On any given night, you might come to our home for dinner and sit next to Tom Insel, the Director of the National Institute of Mental Health, or Dr. Jim Watson, who discovered of the structure of DNA, or Dr. Herb Pardes, CEO of New York-Presbyterian Hospital.
So, even as my family's world has been profoundly affected by autism and it has been extremely difficult, a whole new world has opened up to us. I think back to when Laura and I were starting Slatkin & Co. and we had to "sneak" candles into Kensington Palace (because they were American-made) for the late Princess Diana, who was a big fan of our line. "If I can make a difference in one child's life," Diana once told me, "then all my efforts will be worth it." I still take her words to heart. Someday we will find a cure for autism. Until then, we'll make each day the best it can be, and help each child that we can. One life at a time.