This year, when Autism Awareness Month was on the horizon, I had a sense of anticipation as I think many other spectrum parents did that this would give us a chance to be heard. We all have so much to say and we all want so much for someone to listen. I had forgotten that the reality of "awareness" times can be such a departure from this eager expectation. I had forgotten that it can become a much more complicated experience emotionally then just "getting the word out". The first foreshadowing of this came with the innocent question, posted around the internet by many autism activist moms, "what are you going to do this month to bring awareness to autism? What are you going to do to help people with autism?". With my family's challenges, including my chronic illness and Roo's issues, taking part in the various events seemed daunting. I felt such an intense desire and pressure to DO SOMETHING. Then the realization crept in that I do something every day. Every day is autism awareness day for me. Every day I take every chance I get to get the word out, why would this month be any different?
As the month began and progressed, opportunities presented themselves for me to contribute. As I was chatting with another mom outside a class our kids were taking, it turned out that she is a child psychologist and was very excited to hear that recovery is possible. Other people asked me about information they'd heard and this led to a number of satisfying conversations. Before I had the chance to get too comfortable feeling good about this, though, I was soon rudely reminded of another aspect of Autism Awareness Month that I had somehow forgotten from last year- that the voices of those who know little if anything about autism, yet who feel compelled to clutter the media with their uninformed opinions, crank up the volume so loud on their drivel that it effectively drowns out the voices of those of us who live it. People with autism and their families are marginalized. We become "those people". We are speculated about, criticized, pitied, put up on pedestals, and we have all manner of beliefs attributed to us. Very few actually ask us. In fact, there is no need to ask- if only they would stop talking and listen, then what we are already saying could be heard.
While the endless loop was playing out in the media of people who know nothing of autism citing the numbers, bemoaning that we have no idea what causes it or whether it is actually on the rise, followed by speculation and conjecture regarding treatment options available, autism families were essentially left talking to each other. Sure, there were some very well done pieces in local media, but much of what came out in the large scale was like this piece that appeared on the BabyCenter website. This article is so typical in the way that it places "experts" at the center of the picture, as the only ones with reliable information, and dismisses parents to the periphery of the scene as little more than desperate, misled creatures who will believe anyone who offers hope, regardless of how outlandish it may be. Our persistence in finding ways to help our children is presented as a sad exercise in denial that places our children at risk in contrast to the safety of following the experts' advice. This article, which actually came out after Autism Awareness Month, is another prime example of the levels of mediocrity that pass for journalism in regards to autism. Where to begin- the extremely over-generalized headline stating that "Early Treatment Doesn't Improve Autism Symptoms", the limitations of the study itself, or the information that was omitted? At least there was a shred of honesty in this article when a researcher was quoted as saying "Autism is a hard nut to crack," said Green. "We've got ways to go yet.".
By the end of the month I was actively avoiding the media and depressed. I have been holding onto the old saying that the truth is first ignored, than ardently opposed, then finally accepted as self-evident. My faith in this is slipping although I suppose it's possible that that middle period is simply very long. On the very last day of the month, in the evening, I turned on the TV and happened to catch the last episode of Bill Moyer's Journal. I was both saddened by this- as the end of his show signifies the end of an era of actual journalism in my mind- but at the same time I found the content of the show to be fabulously soothing and healing. The show was a conversation with Barry Lopez and, while it touched on many topics, seemed to keep coming back to a discussion of how to have hope when faced with the suffering that people are willing to inflict on each other. Here is the podcast of the show. It is an hour long, but very, very worth the time if you are feeling lost and depressed in the face of the ignorance, complacency, and greed that seems to stalk families with autism. It was such a fitting end to a month I'd rather forget.
