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Often it seems that emotions - not science -- are the driving force behind autism treatments. I believe that peer reviewed research will change this and lead to treatments that are evidence-based.
Sixteen years ago, our son, Andrew, was diagnosed with severe autism. My husband and I sought help from numerous major medical centers. Andrew's MRI and EEG were normal. Blood work also showed no abnormalities. There seemed to be no explanation for our son's dramatic developmental and behavioral regression. Andrew was miserable and appeared to be in pain. He screamed for hours at a time - Andrew sounded more like a high-pitched siren than a small child. At times, he would repeatedly strike his head against the hard tile floor and we had to take turns restraining him. Fortunately, this behavior was short-lived but it was replaced by outward aggression. Andrew terrorized his sister, and I was covered in bruises from his bites and pinches. Andrew also chewed holes in the drywall and wrote on the walls, he broke the doors off the kitchen cabinets, knocked over televisions and broke anything glass left within his reach. At times, it felt as if we were living in a war zone... At one point, we were advised that it would be better for our other children if we found a residential placement for Andrew - he was only 3 years old. We were desperate for help - and willing to travel anywhere. I contacted the Autism Society of America in search of a medical treatment trial for Autistic Disorder. Unfortunately, they were unable to name a single study being conducted anywhere in the United States. The situation seemed hopeless.
I started asking questions and learned that autism received only a fraction of the funding that other childhood illnesses/disorders received. But, I was taught that if you see something that needs to be done, don't wait for someone else to do it. Soon thereafter, I became involved with Cure Autism Now, a foundation that was just getting started. I also began volunteering my time at hospitals conducting autism research. Last year, I was honored to be chosen to serve as a consumer reviewer for the Congressionally Directed Medical Research Programs Autism Research Program. To see so many brilliant scientists come together to move autism research forward was a dream come true. There were times during the review process when my opinion, as a parent, was different from the scientists' perspective. I felt very comfortable sharing my feelings and I believe that the scientists benefitted from hearing my perspective. The Department of Defense is to be commended for creating an atmosphere where parents and scientists come together as equals with only one common goal - fund the best research proposals.
So much has changed since Andrew was diagnosed in 1994. The benefits of early diagnosis and behavioral therapy are now widely recognized. Medical research is gaining momentum and I look forward to the day that the biological secrets of autism are revealed. Andrew is now 18 - his childhood is gone, but adulthood is just beginning...and his future is looking brighter every day.
Last updated Thursday, May 26, 2022