Musings of a Marfan Mom

It’s Not a Game

| 16 Comments

Before I added the titles of “wife” and “mommy” to my resume, I had the position of “research assistant.” For two years in college I worked alongside one of the top juvenile bipolar disorder researchers in the country. Our project was to study a variety of scales used to help diagnose a host of mental illnesses found in children to see how accurate the scales were. My particular project was comparing scales intended to diagnose juvenile bipolar disorder and conduct disorders.

In any case, over the course of my research I learned a few things about scales. While they can be great diagnostic aids, they’re still pretty subjective. Questions that can make perfect sense to a researcher or clinician may be confusing to the person taking the quiz. Scales don’t always take into account the purpose behind the behavior, which can have a big bearing on diagnosis. They are only one piece of a diagnosis, not the be all, end all. In short: scales are a tool best left to the professionals.

Why am I blogging about this today? I want to call attention to a new Facebook app: The Autism Spectrum Quotient Test. It takes a legitimate diagnostic tool and turns it into a cute little app for users to see how close to being autistic they might be.

First of all, this is totally unethical. I did a little research to find the original author of the scale and learned that the publication on Facebook is in CLEAR violation of the terms of use of the scale (obviously). It’s also irresponsible, as even with the little disclaimer that I’m sure they provide (I haven’t downloaded the app as I didn’t want to support it, but I did find the scale printed on another site, also against the terms of use), as users might really try to diagnose themselves using it.

But beyond all of that, this little Facebook quiz makes out autism to be some kind of game, like those “what does your favorite flavor of ice cream say about you” or “are you really like your zodiac sign” quizzes. Guess what though? Autism isn’t a game! People with autism aren’t something to compare yourselves to. It’s not funny to joke about “autistic behaviors” that you might possess.

My husband and, it is becoming more and more clear, our son, are on the autism spectrum. You know what autism means to us right now? Therapy 4 times a week. Constantly discussing how we might better be able to work with M. at home. Last night I think Mark and I had 10 minutes to talk before bed and we spent most of that time dissecting the Menininho’s latest vocal patterns to try to determine which are hollow mimicking and which are the beginning of speech. This morning I had to set M. in his crib to keep him from bruising and cutting his face (again) because he was beating his head against the table, floor, and wall.

Yep, autism is a really cute game.

So please: think before you play these type of Facebook apps. Consider the people behind them, whether they are people with autism, bipolar, schizophrenia, or perhaps people of a culture or religion different from you. Think how THEY might feel about being portrayed as a source of amusement.

16 Comments

Leave a Reply

Required fields are marked *.