Friday, December 26, 2008

An open letter to Congressman Dan Burton

December 17, 2008

The Honorable Dan Burton
Member of Congress
Indiana, 5th District
2185 Rayburn Building
Washington, D.C. 20515

Dear Congressman Burton:

I am writing to you because I am concerned about how research funds are being spent for autism.

My son Mark received his diagnosis soon after he began kindergarten in 1992 in Fishers. As you know, parents of children with autism suffer a great deal of heartache. I, like many of the other parents, have researched a number of treatments, remedies, and diets in an effort to help my son. I have learned that many of these treatments do not really help. My son made progress, but I believe it was largely the result of intensive speech therapy and the high level of attention paid to him at school and at home. It is impossible for an individual who is watching their child develop to discern whether or not a particular treatment is working. It is also impossible for an individual to determine that vaccines have caused autism in their child, though many parents are convinced this is true. We must trust the best scientists who are doing the research, and we must fund them. Right now, I am afraid that we are wasting valuable money and time seeking solutions in the area of vaccines.

I believe you are sensitive to this issue, and that you are very suspicious that vaccines cause autism. I recently read Autism’s False Profits, by Paul Offit. Dr. Offit is a virologist from Children’s Hospital in Philadelphia. He gives a pretty complete history of vaccines, and outlines the circumstances that led to the research that has persuaded some of us to believe that vaccines cause autism. He also explains the flaws in the study and why it should not be believed.

After reading this book, I began to read about neuroscience. I noticed that none of the neuroscientists whose books and articles I’ve read seem to believe that autism is caused by vaccines. I was amazed to discover what these scientists have already discovered concerning the causes of autism, and the understanding that they can apply to methods of teaching children to help them overcome their impairment. This is such a rich area for research. There is so much opportunity to advance knowledge about causes and treatments that can improve the life of my son, and your grandson. Yet we continue to waste limited resources searching for the cause of autism inside a vaccine bottle. And as we do, we place doubt in the very discovery that has protected a generation of children from deadly diseases that pose a threat to every child.

I wonder if you would consider reading Paul Offit’s book. If so, I would like to know what your opinion is about the evidence that he provides.


Debbie Fornefeld

Sunday, October 26, 2008

Why am I doing this?

My son was born on a cool October day a little more than 22 years ago. He was finally diagnosed with autism in the fall of 1992 when he entered kindergarten. I say finally, because from the first time he nursed, I suspected something was different about him. He had a noticeably large head, and was content only when sleeping. When he nursed, he would suddenly go from drawing very close to me to arching his back and crying. Every developmental milestone was delayed, from sitting up to walking to speech, especially speech. I am not a highly emotional individual, but sometime after he was two, he was finally able to convey to me in the middle of the night that he was crying because he wanted a bottle. I will never forget the joy I felt in that moment. I nearly cried.
The answer to the question, "Why am I doing this?" is simple. Back in the day, when all I could do was get up early, go to work, come home, feed the husband and child, bathe the baby, deal with meltdowns, read books to my baby and point to pictures in books, try to get him to say a word or two, collapse in bed from exhaustion, pray that morning wouldn't come so soon, and finally get up and repeat the entire routine; yes back in that day, there were no other parents around to consult with about autism. It was lonely, we didn't have much in common with other parents with normal children. But one thing was very good. There was also very little misinformation. There was no good advice, but there was no bad advice either. No one was telling us not to vaccinate our child, and there were no charlatans making promises if we'd only try their remedy. Yes, for the parents of an autistic child, those were the good old days.