April 19, 2010
Marching To The Beat Of A Different Drum
I was a bit of a rebel in my younger days. I wasn’t reckless, but I did have this desire to go against the grain and question authority on occasion. While age has mellowed me, this trait does reappear from time to time. I tend to have a different opinion than most people in the autism community. As more children are diagnosed, even celebrities are affected. They won’t hesitate to make their opinions about autism heard in the media. You may think that because we both have children with autism that I share their views. That is not always the case. I do believe that autism is a growing epidemic and research is necessary to determine how it can be prevented. I commend parents and professionals that are dedicating their lives to finding answers. One of the big questions is whether or not vaccines cause autism. The vast majority of the autism community believe quite strongly that they do. Personally, I do not subscribe to this philosophy. I don’t fault the people that do, I just didn’t see any evidence of vaccines causing Pierce’s autism. There was not an obvious difference in him immediately following any of his vaccinations. I have heard the stories of kids having seizures right after a round of vaccines, and I don’t doubt them. I just choose not to fight this battle, because it’s not our story.
Another way that I’m different from most in this community is the terminology that I use to describe Pierce. Commonly, parents will say that their child has autism. Some even take offense if their child is referred to as autistic. They see it as a label, and that when a person uses the term “autistic” to describe their child, that person is ignoring all of the good qualities and traits the child possesses. I prefer to say that Pierce is autistic. I feel that it is part of who he is as a person. To say he has autism, to me, sounds as if he has something like a cold that he will get over or can take a pill and be cured of. I pray that one day a cure will be discovered, but for now, I don’t believe that changing Pierce’s diet is going to rewire his brain so that we can have a conversation. There are other symptoms of autism such as digestion problems that casein and gluten free diets can cure, but Pierce has never had any of these symptoms. That would be one reason we’ve never tried these diets. I guess I just need to see some more convincing statistics of how well diets work to improve communication and social skills; it’s just the skeptic in me.
The last way that I’m different from a lot of parents of autistic kids is how I handle knowledge. I remember well the day that we got the autism diagnosis. We were handed a rather large stack of pamphlets and handouts. I have a tendency to be easily overwhelmed anyway, and for me, this was way too much information at once. Well-intentioned people heard of Pierce’s diagnosis, and I was flooded with news articles and websites with even more information. I tend to seek information in smaller bites and only when I have a particular issue that I need help with. I do appreciate that people love our family and want to pass on information they think will be helpful. Just know that even if I don’t read things right away, I am filing it away to access it at a later date. I know a lot of parents out there never stop searching for news and reading everything they can get their hands on that pertains to autism. While I do have those moments of voracious reading, I just don’t have the emotional energy to be constantly seeking answers. Some might think that I’m not trying hard enough as a parent to learn all that I possibly can to help my son. All I can say is that everyone approaches parenting a little differently, and so far, I think we are doing okay.
My point today is that just like all autistic people are different, so are their parents. While we have much in common, we also have our differences. In that respect, we are no different from all other parents. I really hope I haven’t offended anyone with my opinions. I also hope that I haven’t come across as ungrateful for information that has been passed along to me. I know that all of you love Pierce and our family and we are so blessed by the support you’ve shown us over the years.