My daughter and son-in-law own a CrossFit gym. They gave me time to speak as part of their Five Minutes for Autism program. The goal was to raise funds and turn a global spotlight on the impact of autism on families and individuals around the world.
Here’s what I said:
"Autism is a spectrum disorder. Some little kids go to college; some little kids stay home until their parents die. Today I want to focus on how to reduce the risk if you’re lucky, and how to help your child become more independent if you’re not.
Let’s start with reducing the risk. Here’s the Three Big Lies. You’ve heard them on CNN, Washington Post, or New York Times.
Lie number one, autism is not an epidemic. The truth is, when Ben was born, the autism rate was one in 10,000. Now it’s one in 68 boys. You’ve heard it’s just better diagnosing. So where are all the adults like Ben? Few and far between. But I’d bet you know kids in your family, or extended family, or even in this gym, who have autism. Classrooms are flooded with disabled children who weren’t there when you and I went to school. Ask a special education teacher.
Lie number two: autism is nothing to worry about; it’s just another way of being, and neurotribes of autistic adults will usher in a brave new world. Truth is, some of our kids are specially gifted, some go on to college and hold jobs with help. But most don’t. Now, Ben is my hero. He struggles every day. I admire the way he bounces back with his smile and positive attitude and humor when he is misunderstood, excluded and shunned. But I wouldn’t wish on any child, or any family, the screaming, the gut problems, the sleeplessness, the headaches, and the unrelenting mess and stress that go with severe autism. Last week Ben wandered off. He can’t answer when called, ask for help, say his last name or “I’m thirsty.” Six police cars and a helicopter joined the search. He was found when reported for stealing a Coke. Barring a medical breakthrough, he’ll require supervision 24/7 all his life. After Sue and I are gone, who will do that job? We can build more prisons. Or we can find ways to help these kids. As their numbers approach one in ten, they are us.
The third lie is that the link between vaccines and autism has been debunked. I have in my wallet a list of peer-reviewed studies that show the connection. It was compiled by Sharyl Attkisson, former investigative reporter for CBS News. “Former” because CBS wouldn’t let her talk about the connection on TV. And here’s something else you won’t hear on TV. Dr. William Thompson, senior research scientist at the CDC, confessed that he and his colleagues covered up evidence linking the MMR vaccine, when given before 36 months, to increased risk for autism in African-American boys. Dr. Thompson said his team took the troublesome data that revealed the link into a room and literally tossed it into a big garbage can. They wrote a paper claiming there was no link. That paper evolved into the 2004 Pediatrics article that fed the lie, Vaccines don’t Cause Autism. Dr. Thompson says, “I feel great shame for what we did.”
So what can you do to reduce the risk? First, when your baby is born, skip the Hepatitis B shot. If your partner isn’t Hep-B positive, your baby doesn’t need it, because hepatitis is a sexually transmitted disease or it’s spread through dirty needles. Stay the hand of the nurse. She may call the doctor, who will lecture you. Listen politely and say no. At well-baby checkup, your pediatrician will offer the shot again. If she won’t take no for an answer, fire her.
Second, do your research. Read Vaccines 2.0. Vaccinate selectively. No flu shot during pregnancy. Space the vaccines. Delay the MMR – that’s the mumps, measles, rubella shot – until your child is at least three years old.
What if your child has autism? When Ben was diagnosed, we were told, “There is no medical treatment. Save your money for his institutionalization when he turns twenty-one.” That was twenty five years ago. Autism wasn’t taught in school. Today, integrative doctors and can help. Applied Behavior Analysis (ABA therapy), nutrition, biomedical and physical therapies can move your child toward greater independence. Start now. There’s hope.
I’ll turn this over to Ben’s mom, Susan, who will tell you about how far Ben has come, and the latest work we’re doing with our brave, handsome son."
Dan E. Burns, Ph.D., is the father of a 25-year-old son on the autism spectrum and the author of Saving Ben: A Father’s Story of Autism. Dr. Burns is a Contributing Editor to Age of Autism and Executive Leadership Team, Health Choice. Through Appleseed Ventures, Dan empowers parents to organize communities where their adult ASD children and friends can live, work, play, and heal.