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"Assburgers Syndrome" doesn't exist. So why have so many people been Googling it? The answer to that illustrates the impact that media can have in autism awareness, both for good and for bad.
Tuesday, the new NBC show Parenthood formally diagnosed one if its characters with Asperger's. By Wednesday, the resultant public interest had led "Asperger's Syndrome" and other, more unfortunate, variants to become the top search trend in Google. The public interest is gratifying, but given the confusion that unfamiliar viewers had over the spelling alone - it begs the question: What should the role of media be in autism awareness?
Clearly, such increased interest can be valuable, as it puts Asperger's on the radar of those who previously knew nothing about it, or the struggles of those who live with it. For some, can provide an answer to questions that have plagued them and their families for years, such as "What is going on with me? What's going on with my child?" or "Why am I so different?"
As I've mentioned in previous posts, the movie Rain Man had a very strong part in helping me to identify my own place on the autism spectrum. Yet many (including me, at times) have been frustrated by the repercussions of the portrayal. Some have built entire blogs around that frustration.
While I had my own issues and confusion around Rain Man, I can't say that I regret that it exists. When I weigh its impact on my life - I'd say the positive outweighs the negative. But, as regular readers here will know, I've been a pretty strong critic when the media doesn't get it right. Some have taken me to task, chiding me for taking something frivolous (TV), too seriously. True - it's entertainment - but this entertainment really can have serious consequences.
Parenthood is only the latest in a string of TV shows and movies to incorporate autism or Asperger's into the story. February 6 marked the debut of the much anticipated bio-pic of Temple Grandin's life. A some time before that, romantic comedy Adam was the talk of the town. The net has been abuzz for years with unofficial diagnoses of popular TV characters: House M.D., Temperance Brennan of "Bones", Sheldon Cooper of The Big Bang Theory.
In a recent article, "How TV shows try (or choose not) to depict Asperger's syndrome," Alan Sepinwall of the Star Ledger quotes:
"'The business has been shy about it on a lot of levels,' says Emily Gerson Saines, a producer who worked on HBO's recent biopic about celebrated autistic author Temple Grandin, and who has an autistic son. 'When you have an incidence rate of 1 in 100 children and 1 in 70 boys, I think it's misrepresentative not to have more storylines about autism.'"
Good point.
What seems clear from Sepinwall's article is that some in Hollywood are now getting the importance of accuracy, some avoiding the label altogether to avoid possible pitfalls. He writes:
"ABC's 'Brothers & Sisters' was originally conceived with Rachel Griffiths' character having a child with Asperger's, but the producers scrapped the idea because, says producer Ken Olin, 'we believed that to do a responsible and authentic depiction of the condition would have been overwhelmingly difficult for a ten-year-old actor.'"
If this trend continues, I hope that this concern for accuracy will become more representative of the attitudes in Hollywood. Because done right, such portrayals can do a great deal of good. When you've gone through life isolated and alone, feeling different from everyone around you - the emotional impact of seeing someone you can identify with on the screen is staggering.
I was born on the west coast. When I was little, my most favorite times were when we had cause to cross the Golden Gate bridge. Awed by the architecture and beauty of the structure, I'd gaze up at the towers, marveling at the shapes they made against the sky, watching as those shapes changed with our movements as we zipped by.
At one particular point on the bridge, the typical white noise of the road would change to a more patterned, almost singing, sound. When the change occurred, I found it difficult to avoid the compulsion to reproduce that sound: RIMMM. It was one of my very specific "quirks" that alternately charmed and exasperated those around me.
I never thought to expect that anyone else would share these behaviors. Imagine my shock when, while watching Rain Man, I saw my "quirk" reproduced almost verbatim, on the screen (see from :50 in the clip below). That's a feeling I'll never forget.
Of course, not every person with autism does this - and that's the point that many have seemed to miss. It's very hard to generalize from a single person or portrayal the norms of an entire population. But, without other information, people often do.
On the other hand, when manifestations of autism coincide so specifically - it's far more impactful than the reading of any textbook or diagnostic criteria. You see what it is - not what you interpret it to be.
So many people do not pay attention to conditions they interpret as "obscure," or not affecting them. The lives and struggles of those who are different can seem so distant - until it affects you directly. But ignorance has a price, and that price is not easily calculated or anticipated.
One thing I identified strongly with in Rain Man was the rigidity around rules - like when he stops dead in the middle of the road when the walk light turns red.
I was a person who would walk more than two city blocks to cross the street at a crosswalk, even if the road was deserted. The rules said that you didn't jaywalk, so I didn't do it. When I was young, my parents took great comfort in this...figuring that my slavish dedication to safety rules would keep me safe.
It was a mistaken assumption.
You see, for all my dependence on these rules, I didn't get the basic "common sense" behind them. I followed them by rote, missing entirely the reason you follow safety rules. You follow safety rules to protect yourself from those who don't.
That lesson was taught to me fairly forcefully by a large, fast moving pickup truck. My Junior High School was located on a busy four lane road, the main drag of our little neighborhood. I loved to run home, and did so every day. Without a basic grasp of the "why" behind basic road rules, the traffic signal in front of my school was less a warning beacon than a starter's pistol. The minute it turned green, I was off like a shot.
It never occurred to me that a driver in the oncoming lane would disobey the red light. By the time I belatedly turned my head to look, it was too late. All I saw was the grill. He hit me head on. In a blink of an eye, I was lying in the gutter, broken and bleeding. I'm lucky to be alive today.
The way I look at it, ignorance almost killed me. My parents and teachers did the best they could, but they had no reason to believe that I needed help with these things. I was smart, they knew that. How could I have the SAT scores to get into college, yet still need coaching to understand basic safety rules?
Such unevenness in skills is very hard to compute. Unless you have a framework for it. That framework is a diagnosis. I didn't have that. If there had been more awareness in my earlier years, would I have gotten that diagnosis? Could that accident have been prevented? I often wonder.
When reading some of the buzz on the net about the Parenthood storyline, I saw several comments along the lines of "Oh, great, now we'll have another batch of basement dwelling geeks self-diagnosing!" I find I can't get upset about that. Because, if in the process, even one child is legitimately diagnosed that wouldn't have otherwise, if one child can be spared the painful experience that I had, I feel it's worth it.
Awareness saves lives, literally and figuratively. If Hollywood can play a positive part in that, I'm all for it.
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