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.

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16 Comments

  1. Facebook is the new Myspace. It’s not only irrelevant, it’s becoming a place for cruelty and ignorance, rather intended or not. It’s crude and show cases the worst of humanity. Yeah, yeah, I take it a bit too far, but I’m so tired of the way things fly around there and people jump on board. And, what about people that get a score saying their autistic? Mess with one’s head much?

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    marfmom Reply:

    Then they start diagnosing themselves, further feeding the idea that autism is the new fad diagnosis, further feeding into all those people who accuse me of making up my son’s diagnosis because CLEARLY I just want to be trendy.

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    Kristine Reply:

    Like ADD was the new “thing.” Note, I don’t think that cases of ADD are being made up, not what I’m saying. It also touches on this, people that constantly say they’re “depressed” well many of them are, some of them just had a bad day. It can be dangerous. Because really depressed people have that norm to look to. I think that this could lead to those dangers with autism. How frustrating for you. I’m sorry.

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  2. While I can’t pretend to know first hand what it is like to have ASD in the family, I can empathize with your feelings, certainly.

    I will be honest, I did NOT use the app on facebook, because I wanted to be sensitive to those who are affected by ASD. However, I did, maybe shamefully, google the test and find a site with the same “quiz” so that I could take it and see what it was all about. According to the test, I scored 37, which was not high enough for ASD, but above average in the “normal” population. Why did I do this? Well, my speech therapist aunt had it on her profile so I thought maybe it was somewhat legit. You can find similar self diagnostic tools on reputable sites like autism speaks.

    My daughter has some definite quirks that made me wonder for a long time if she was on the spectrum. I still wonder. My son is speech and socially delayed, as well as delayed in motor skills and we wondered about autism with him too.

    Is it dumb to take a quiz to find out about autism? Probably. Is it easier than going to a doctor…. well, yeah. People with no direct connection to autism are ignorant about it, just like people with no direct connection to anything else. I don’t think it is bad to want to know more, it is just not constructive to get your info through less than scrupulous channels.

    I think there is thoughtlessness, not cruelty behind this app. I think people are hearing more and more about autism. We hear about red flags and we wonder if our children are affected. Then, we begin to wonder if we are affected. People are curious. This doesn’t make it right, but I don’t think the intention is to hurt others.

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    marfmom Reply:

    I agree, I don’t think most people are taking it to be cruel. I think as far as Facebook goes, it’s more of a thoughtlessnes thing for many.

    In my opinion, there’s a big difference in taking it to see if you might need to see a doctor and in taking it to compare your score with your friends. The quiz on FB is legit; it appears from the description to be the actual diagnostic tool. The difference I see though, in it being hosted on a site like FB vs Autism Speaks, is that Autism Speaks then provides resources for what to do with your score. Get a score in the autism range? They’ve got steps of what to do next on their website. My assumption is the FB application doesn’t provide any of that, but also that the majority of people on FB are taking it for a different reason than those who seek out the scale through other channels.

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  3. I cannot agree with you more about this app.

    I have seen a number of my Facebook friends taking it and saying things like, “Whew, good to know I dodged that autism bullet”

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    Tracie Reply:

    I think that comment being made after taking the test is even worse than the test. How cruel.

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  4. So well said. I saw someone take it yesterday and cringed.

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  5. Ok, I’m gonna disagree. I do agree that it is NOT a game, that’s for sure; and if it violates the rights of the test, that is just wrong. However, there are a lot of people out there who never heard of Asperger’s Syndrome or the Autistic Spectrum until they were sitting there in the doctor’s office. Suddenly all the behaviors of family members come together like a giant puzzle and start to form a picture and a pattern and you realize that you were not ‘weird’ or ‘wrong’ or to blame for all the social troubles in your life. Facebook can be quite trite, but if it should make even one person look into this further, I think it’s a good thing. Just like ADD. I can’t believe how many education professionals still don’t recognize it as legitimate or know it’s symptoms. We deal with it everyday, but most of the world doesn’t and I don’t think putting some light on it is bad.

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    marfmom Reply:

    Again, I think it comes down to the reason people are taking the test. It’s one thing to take it to see if you might fit the criteria, another as a game.

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  6. I did take the test and I didn’t see it as a game. Fully understanding that it isn’t a diagnosis, it was interesting for me to see how I scored, since I have a daughter with autism. The only facebook friends of mine that have taken it are other autism parents. No, autism isn’t a game….to me it’s more of a full time job. Here it means therapy 9 times a week.

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  7. This is such an interesting conversation! Everyone has such a unique perspective on the quiz. Seeing that people I know have taken it on Facebook does bother me because those people are using it as a game. Now, if a parent of a child with autism took the quiz, I think that makes some sense. It’s never a bad thing for parents to find out more about autism. Unfortunately, this is a diagnostic tool that isn’t just meant to be used to fun. There are a TON of resources out there for people who are curious about autism and for people who are looking to see if they or their child might fit the diagnostic criteria. For me, a Facebook quiz just can’t take the place of meeting with a professional

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  8. I will say I took the test… I didn’t do it for fun, I didn’t do it to mock, or scorn or to cause shame or to ridicule, I did it to simply see where I fell… I fell on the high end with a score of 44, I did visit Autism Speaks, I did look into further diagnostic criteria, I did see what options were available to me as an adult with the possibility of being on the spectrum. I am choosing not to see a doctor AT THIS TIME… I have enough medical diagnosis’, and I honestly don’t need more right now… I am married, I have a child, I have a small group of life long friends, I study people, and I’m a great fake. I laugh because other people laugh, not because I found the joke funny… I show concern for other people because I’ve been taught that is what you do. These actions do not come natural to me, but I work on it… I don’t believe that I am irreparably hampered by possibly being on the spectrum. It is nice to know that I’m not weird, that I’m not “retarded” like I was taunted with in school… Even without an official diagnosis, I feel like some things have been explained for me… My eyes were opened because of the app on FB. But I did the follow up leg work on my own… I think its harsh to say that the diagnostic test was put on FB to ridicule or make light of Autism, regardless of it violating the rights of the test / terms of use / whatever, its there to help bring awareness, not to hurt anyone touched by Autism, or Aspergers.

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  9. As a mother of a beautiful daughter with autism…I guess I both agree and disagree. I dont think autism is a game, but in our family we are leaning more on the side that this is genetics. With that being said, that is the reason I DID take the test. Just to see where my thoughts/actions differ or are the same with my daughter.
    As for the test itself, when we were looking for the offical diagnosis we were given this type of written test 3 times! There is no offical genetic testing so all the doctors we’ve encountered have this standarized booklet (that is a joke in itself!) that we must check off the answers that apply to our child! One doctor even suggested to me that she wasnt even on the spectrum because she watched a few minutes of Dora while him and I were talking!
    Anyway, not all that take the test think it is funny or making fun of someone. I would never in a million years do something and I would probably be the first in a group to say something if I felt my daughter, or anyone for that matter was being made fun of.
    Thanks….Christine

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    marfmom Reply:

    Right! Like I said, this post was directed to those who WERE taking the test as a game. It’s very different when you’re taking it to try to understand your child better or see where you might fit.

    How frustrating about the doctor! We have gotten a comment like that from our son’s speech therapist…because he smiles and laughs, he must not be on the spectrum. Ugh.

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