Autism Speaks uses a single blue puzzle piece.
During the month of April, Autism Awareness Month, we'll see a lot of these symbols. On April 2, Autism Awareness Day/Autism Acceptance Day, Autism Speaks encourages homes, businesses, landmarks, and buildings all over the world to "Light It Up Blue" to spread awareness and acceptance.
Last year, as a newbie autism mom, I encouraged family and friends to "light it up blue" and I did the same. I embraced what I believed was a beautiful visual celebration of these amazing individuals. What can be bad about light? And what can be bad about spreading the news that these people are worthy of respect and love?
Later, I learned of the emotionally charged debate over Autism Speaks, which I believe is the wealthiest and is certainly the most visible autism organization in the world. I read articles and blog posts by autistic individuals who loathed the puzzle piece, hated the founders of AS, and cited perfectly good reasons for their opinions. First, let's identify the reasons for hating AS. They spend more money on finding a cure than on practical help for diagnosed individuals and their families; this is offensive to many autistics. Further, the language of AS in all forms of media can be called nothing short of fear-mongering. (I won't go into detail here, because references to these verbal attacks are easily found with a simple google search.) Last, though certainly not least in the eyes of autistics, the Board of Directors of AS does not include even one person diagnosed with autism.
Now, the puzzle piece.
The puzzle piece is hated about as much as Henry hates vegetables. (That's a lot, by the way.) No one wants to be patronized, pitied, or considered a problem to solve. From the Life with Aspergers blog:
"There are those who say that it makes us out to be a game, a puzzle to be solved. This is not a good feeling to awaken in a group of people who are accustomed to being constantly poked, prodded, researched, surveyed and medicated by health professionals. We don't want to be studied and we don't want to be solved."
I was taken aback by this sentiment at first, because it never occurred to me to think of the puzzle as a symbol of the person; I always assumed it was a symbol of the bewildering and sometimes mysterious disorder. You may ask why it's bewildering. Well, as the name implies, Autism Spectrum Disorder includes a wide range of symptoms and skills under the larger umbrella of core characteristics. For example, ASD always involves impairments to communication, but some folks are nonverbal and some are highly verbal.
With increasing awareness, I admit, the mystery is not as profound; still, the spectrum-like aspect of the disorder remains puzzling or, at the least, intriguing. Therefore, my sensitive nature is not offended by the symbol. In fact, I particularly like the rainbow-colored, interlocking pieces used by the Autism Society, because the meanings are more open-ended. Perhaps we're all puzzle pieces, and together we make the grand whole?
On the other hand, I am keenly aware that my sensitivities aren't all that important. It's the autistics themselves who should be heard, and many are offended. I will not say "all," for I simply do not and cannot know, but I can say "many" with certainty.
This year I decided to celebrate the day without buying merchandise from Autism Speaks. I will no longer send my money to an organization whose philosophy does not match my own. I did, however, hand out these lollipops to Henry's preschool director, teachers and classmates:
When I ordered the lollipops I didn't think of them as problematic or offensive (obviously, or else I wouldn't have done it). I simply wanted to remind folks about the month of April, perhaps encourage people to learn more, and also thank everyone at UUMP who has been so supportive.
But I now wonder, what if Henry understood the puzzle piece? What would he say? The fact is, I don't know, and I won't presume to know until he can tell me. Next year, though, maybe I'll choose a different way to celebrate. Just in case.
What I want Henry to know one day is that his daddy and I always fought for him, always believed in him, always loved him. We've made mistakes and will probably make more, but we make the best decisions we can make on any given day. This disorder gave us a new learning opportunity and, yes, challenges, but we have never, ever seen Henry as a game, puzzle, riddle, or problem to solve. He is above all a child of God, fearfully and wonderfully made, and our souls' deepest delight.
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