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Wednesday, January 11, 2012

Looking Forward at the Autism Spectrum: My Thoughts

As much as I respect John Elder Robison, I would have to disagree with his latest blog post. Don’t get me wrong- I understand his argument, and I hear what he’s saying. However, I feel that trying to “confine” the label of autism would hurt more than help the cause.

Every single individual with autism is different; I have yet to meet two that are exactly alike. Some are verbal, some are nonverbal. Some achieve communication via sign language. Some possess more severe learning disabilities than others. Some are able to be “mainstreamed” into regular schools with little or no additional assistance; others are forever working at their own pace in special schools.

If we try to narrow the definition of autism, how many children will be overlooked and left without assistance? How do we even begin to narrow the definition of autism? Is the label of “autistic” reserved only for nonverbal individuals? Must all autistic individuals exhibit rocking behavior or have a special interest in numbers? If that’s the case, then what happens to the OTHER children- for example, those who exhibit rocking behavior but who are also verbal?

The thing about autism is that it does affect each individual differently. I’m no scientist, but I would think that in order to truly understand a disability you would want to examine the entire spectrum rather than limiting your research to a few attributes. My fear is that, in restricting how we view autism, we are crippling research that could be groundbreaking. It’s true that not every breakthrough may assist every single individual with autism; that’s why we as humans take things one step at a time, or in this case one victory at a time. A breakthrough in communication for individuals with autism may be meaningless for the parents of a verbal child with autism, but it could mean the world to the parents of a nonverbal child with autism.

Having Asperger’s, I do realize that many of my behaviors are different from the behaviors of an individual diagnosed with autism. However, I have also seen my behaviors reflected in many of the autistic individuals that I’ve met. I understand that, as John Elder said in his blog post, many of these individuals are more “crippled” than I am. We should not lose sight of their plight just because some individuals are “less” autistic than others, by medical standards. But can’t we, for example, look at an individual deemed as having Asperger’s or being on the high-functioning end of the spectrum, examine the ways in which they have overcome the more severe aspects of their disability, and utilize it to further research and educational practices for our more “crippled” brothers and sisters? Absolutely!

When it comes to autism, the media is truly a double-edged sword. On the positive side, it’s nice to get a little exposure; at times, we may even feel a connection to a particular TV character, which can be a good thing for our self-esteem. To use an example that many people would be familiar with, look at Sheldon Cooper on “The Big Bang Theory.” They have never come out and said that his character was diagnosed with Asperger’s; however, Sheldon exhibits so many Aspergian characteristics that many viewers feel safe in assuming that he has Asperger’s. For me, personally, seeing a character like Sheldon is non-offensive; from an objective standpoint, he’s a pretty successful figure! He earned a Doctorate, he’s teaching in a subject that’s clearly his “special interest”, he’s able to support himself, and he even has a decent social life. Yes, his character can be socially naïve, but to someone like me that can be almost reassuring. To see Sheldon commit a social faux pas, particularly one that I may have committed in the past, gives me a sense of relief. I can laugh about it, and I’m sure that other people like me are laughing for the same reasons; it’s absolutely wonderful to have these little moments whereupon I realize that I’m not alone. In my opinion, the character of Sheldon Cooper does not represent Asperger’s; rather, he represents an individual, more than likely undiagnosed, living with Asperger’s and doing his best to relate to the world around him.

Unfortunately, as John Elder said, the media can also offer up some nauseating portrayals of autism. Recently, I’ve seen previews for a new TV show called “Touched.” From what I can tell, the plot is something like this:

-Man has autistic son.
-Autistic son is nonverbal.
-Autistic son has a special interest in numbers.
-Autistic son’s special interest turns into bizarre “superpower”, as father reads into the numbers and “translates” the connections in the real world.

I loved Kiefer Sutherland in 24, but I highly doubt that I’ll be tuning in for this new show. The previews themselves make me angry; I mean, here we have yet another show that will give the general public the idea that individuals with autism possess an innate genius, or an innate “superpower.”

How about we make some "New Year's Resolutions" for the autism spectrum? These would be my suggestions:

-Refrain from limiting the criteria necessary for a diagnosis of autism. This is a spectrum disorder, and we should examine any and all symptoms if we are to find the key to unlocking the mystery of the disorder.
-Maintain a focus on "recovered" individuals with autism, but with an emphasis on adapting the "curriculum" or "activities" that enabled them to recover and applying them to a wider audience. What works for one person may not work for everyone... but it may work for enough of them to be worthwhile.
-Take media portrayals of ASDs with a grain of salt.
-Live, laugh, and love. Isn't that what life is all about?

Many thanks to John Elder for writing such a great blog post and inspiring me to think more about these issues.

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