This post has been on my mind for a while but I have had a tough time writing it. You see, I want to address the negative caricatures of autism moms often seen in the media. But, I can't seem to find a way to discuss it without sounding a bit (okay, a lot) crazy myself. What's an autism mom to do? Should I bite my tongue and sit quietly while injustice occurs? Or, do I speak my mind and risk sounding like a lunatic?
Once again I choose to wave my crazy flag high and proud...
Some of my favorite TV shows have let me down. I enjoy NBC's "Parenthood". It was the first prime time show to feature Asperger's in a major storyline. And, they've done a pretty good job with the topic. However, I was furious at their portrayal of biomed parents. I know most of you saw the episode I am referring to and there was much discussion online following it. Many of us sat in horror as we watched the frazzled mom discuss biomed interventions while her autistic child ran wild in the background. The message received was that misguided and delusional parents cling to the hope of ineffective interventions. While I know that not all biomedical interventions help all children on the spectrum, I personally have witnessed huge improvement in my children. I also know thousands of other parents have experienced similar results. I think the numbers would be even higher if mainstream medicine wasn't so close-minded and content to offer parents little to no advice on how to help their children.
A recent episode of ABC's "Private Practice" referred to Dr. Andrew Wakefield as a 'wacko'. Another episode last year featured a non-vaccinating 'wacko' parent. Ah yes...the vaccine issue. There really is no way to enter the fray of the vaccine discussion without getting called a name. If you question the safety of the current vaccine schedule, you are immediately dubbed an anti-vaxxer. If you say your child regressed after a vaccine, you are crazy. The fact is, few people are truly anti-vaccine. Most simply want more studies done or have the vaccines administered with more caution. Many parents have witnessed regression or other adverse events and would like for someone, anyone, to hear them. I'm going to take a truly unorthodox approach to this and give a little credit to the moms. You know, the people who are with their children every day...the ones who know their children best? If a mom tells me her child was not affected by vaccines, I believe her. If a mom tells me her child was adversely affected by a vaccine, I believe her too. Why? Because she was there. She knows more about her child than I do. At this point, the only way to restore confidence in the vaccine program is to provide studies that are relevant to the way vaccines are administered today. Those studies should be done by an objective third party that has no financial gain from the product in question. It was not that long ago that Big Tobacco provided their own studies that said smoking was safe. In fact, pregnant women were often advised to smoke in order to control weight gain. How crazy is that?
Dr. Oz recently dedicated most of an episode to the causes of Autism. I sincerely appreciated the presence of experts with diverse opinions and the town hall style discussion. Half of the audience consisted of parents of children with autism. It was clear to me that these parents were angry and there were a couple of outbursts during the discussion. I don't fault the show for this. Our anger is real and I think these open discussions are necessary to bring much needed change for our children. We have a lot to be mad about. The lack of research, respite, services, and awareness all weigh heavily on the minds of parents. The conflicting information alone is enough to drive a parent batty. You can ask 3 different doctors about the causes and treatments for autism and you will receive 3 different answers. So yes, we are angry, frustrated, and scared. While some viewers may have perceived this as 'crazy', we know we're mostly just really pissed off.
That's all for now. I've got to go polish my tin foil hat and figure out which meds I forgot to take this morning.