So what? [Redux]

In my post So what?, I referred to the autism mothers shown in the video Autism Every Day as selfish and whiny. To any autism parents who took my comments as personal insults, please allow me to apologize. Believe me, I know that there are times when you can’t help complain, because there is often a lot to complain about. The many autism parents I’ve met online through this blog and other forums are doing their best to get through the hard times and enjoy the good. It was not my intent to trivialize or dismiss what we as autism parents experience, yes every day.

What really irritated me about the video was the depiction of these autism mothers as selfish and whiny. But I guess I shouldn’t be too surprised at the content and message of the video, considering the source – Autism Speaks. The following is excerpted from the Founder’s Message (emphasis added):

• In 2004, our grandson was diagnosed with autism. Helpless, we watched him slip away into the cruel embrace of this disorder…. We launched Autism Speaks in February 2005 to help find a cure for autism by raising the funds that will facilitate and quicken the pace of research, to raise public awareness of autism, and to give hope to all those who suffer from this disorder.
• Few disorders are as devastating to a child and his or her family. Instead of Little League games and sleepovers, most people with autism will face lifelong supervision and care, exhausting a family's financial and emotional resources.
• The pace is quickening, and, God willing, we won't stop until we have conquered autism—one child, one voice at a time.
  

And their mission:

We are dedicated to funding global biomedical research into the causes, prevention, treatments, and cure for autism; to raising public awareness about autism and its effects on individuals, families, and society; and to bringing hope to all who deal with the hardships of this disorder. We are committed to raising the funds necessary to support these goals.

Though I don’t necessarily believe in the possibility (or need) for a cure of autism, I don’t begrudge those who seek a cure. But the mission stated above, all of the work being done and money being spent by Autism Speaks and similar organizations, seems to leave out a very important piece of life with autism – namely, living with autism. The mission, as stated, is basically saying, “We’ll have this problem figured out soon, in the mean time just hang tight.”

The strange thing, though, is that the Autism Speaks site is filled with information such as "How to cope" and "How to grow." Why didn't this show up in the video?

As with many of my posts, I started on one thread, ended up on another (with yet another thread - cure and prevention - lurking just below the surface), and found myself not really knowing what my point is (if, indeed, there is one). I think I am still suffering from Ack! and Thbbbt!, trying to get all of this information sorted and figured out. Though intellectually I know that is not really possible, I still hold out hope.


tagged as: Autism, Asperger's Syndrome, Autism Speaks