Even now, more than five years after my daughter’s diagnosis, it’s a bitter pill to swallow. Why is autism still such a mystery? Why don’t we have more answers?
Part of the problem is a lack of sufficient funding. In Fiscal Year 2010, the annual federal expenditure on autism research was $218 million. That sounds like a respectable sum until you learn that $231 million was spent on pediatric AIDS, which affects roughly 1 child for every 300 children diagnosed with autism.
Part of the problem is the media’s reluctance to ask tough questions—about the vaccine schedule, environmental toxins and threshold limits, mercury levels in seafood and pregnant women, and the long-term impacts of shortchanging special education, to name a few. Most stories repeat the same tired information. No one seems willing to dig deeper.
Part of the problem is the government’s inability to see the situation as the crisis that it is. Currently 1 out of 100 children have autism. Prior to 1990, only 1 child in 2,500 was diagnosed autistic. Changed diagnostic criteria can explain only a portion of this dramatic increase. What else is going on?
And part of the problem is the medical community’s stubborn refusal to treat autism as something other than an incurable neurological disease. No need to find treatment options if the condition is permanent. We’re sorry, but there’s nothing we can do.
Can you imagine if your child was diagnosed with cancer and your pediatrician patted you on the back and said, “Wow, I’m disappointed to hear that. Good luck to you.”
That’s more or less what happened when Katie was diagnosed. I’m grateful I wasn’t told to expect to put my child
in an institution. I wasn’t told that biomedical treatments are dangerous. I wasn’t told I was to blame because I was an emotionally frigid “refrigerator mom.” Instead I was directed to the MIND Institute at the University of California, Davis. Which is a wonderful place that does cutting-edge autism research, but even it doesn’t have the answers.
No one does.
So I learned to do what every parent of an autistic child does. I went in search of information, and over time, formed my own opinions. I developed theories. Do I know if they are correct? Hell no. But neither Katie nor I have the luxury of time. Waiting is not an option. So I took my background in environmental science and applied it to autism. I read whatever I could and then made the best decision possible—two parts logic and one part intuition. I tried something, saw how it worked, and adjusted as I went along.
A friend once asked how it felt to use my child as a human “guinea pig.” I was shocked. What kind of parent would do that? Certainly not me. Then I realized she had a point. In a sense I was doing exactly that.
I can’t say I feel good about that statement, but what other choice do I have?
What would you do if you were in my shoes?
Until next time,
Cynthia Patton
Cynthia,
I think every parent “experiments” on their child, and does so in the context of the biggest problem they have to face. I am very blessed that my “experients” are how to get my son to eat more vegetables. Your “experiments” by necessity are much different. I applaud you. It is parents like you that advocate, research, fundraise, push scientists to do better, and create breakthroughs. It sounds to me like you are doing exactly the right things.
Thanks, Trish. Most days I feel like I’m doing the right thing but then every so often someone says something that makes me doubt myself. Thanks for reminding me that in a sense, all parenting is an “experiment.”