Important Disclaimer

Since I currently have several employers/supervisors/churches/etc., please know that none of the words on my blog represent them or their beliefs. This blog is my own creation.

It also does not represent my children's perspective, nor my mother's; they think I am funny, but misguided.
(Quick update: only my mother thinks I'm funny now.)

Wednesday, October 27, 2010

Autism Spectrum Quotient. *blank stare*

Updated links: 

Oasis @ MAAP, a joint project with individuals with Asperger's and autism, parents, and professionals.

UCSB Koegel Autism Center. Our family found Pivotal Response Treatment to be helpful.
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The last few days a new quiz made the rounds on facebook: the Autism Spectrum Quotient Test.  This little quiz can be found by searching on facebook or by going to this website: http://www.wired.com/wired/archive/9.12/aqtest.html.

On the facebook version, this quiz is prefaced with a quick description:
The Autism Spectrum Quotient, or AQ, is a questionnaire published in 2001 by Simon Baron-Cohen and his colleagues at the Autism Research Centre in Cambridge, UK. Consisting of fifty questions, it aims to investigate whether adults of normal intelligence have symptoms of autism or one of the other autism spectrum conditions.
After taking the test, the quiz calculates your AQ, a number between 1 and 50, and on the facebook version you can post your result to your wall for all your friends to see.

According to the Wired article linked above, the average score in a control group of adults was 16.4; 80% of those diagnosed with autism or a related disorder scored 32 or higher.  The article is quick to point out that this test is not a diagnostic tool and that "many who score above 32 and even meet the diagnostic criteria for mild autism or Asperger's report no difficulty functioning in their everyday lives."

I am the mother of a child with autism. I am familiar with screening tools used to identify individuals who might be somewhere on the autism spectrum. When my son was two I started scouring the internet, looking for this kind of "test." I found one and it was helpful. So what's the problem, you ask?

Here are some thoughts.

1. This quiz was presented on facebook in the same way as the quiz "Which Pokemon Are You?" as if there is something socially amusing about being "more or less autistic." Autism has serious life consequences for many of the people diagnosed with it--not the least of which is the social stigma the rest of the world attaches (in addition to overprotective parents who write blogs).

2. The original quiz comes from the Autism Research Centre in Cambridge. Their terms and conditions for using the tests are very clear: "Tests developed at the Autism Research Centre (ARC) may only be used strictly for professional, scientific or clinical purposes, and are not for commercial use. Use of these Tests for commercial purposes may violate copyright legislation." I do not think a facebook quiz qualifies.

3. The facebook description of the quiz is misleading. Many adults with autism also have "normal intelligence." People with autism may or may not have developmental delays or difficulties functioning, just like people without autism.

4. The simplistic way this quiz is presented, as a sort of personality questionaire, seems to equate introversion with autism. "Oh, hey! I don't like parties, I'm autistic hehe." The individual personalities of people with autism are as varied as people without autism. There are clusters of characteristics that tend to be present in people with autism, but being uncomfortable with crowded rooms or making eye contact is not the same thing as being introverted. Speech and language difficulties are not the same thing as preferring to spend time with people or books.

5. The autism spectrum includes a large number of diagnoses, including autism, asperger's syndrome, and PDD-NOS. This quiz does not help raise awareness of the complexity of the autistm spectrum or the people on it.

I think what troubles me most is the way the quiz is being used on facebook. Comments like "I got an AQ of 36, that sure explains a lot!" are a way of mocking individuals who do have autism. The FAQ section of the quiz claims that this isn't just "another trivial facebook quiz" and points to the original description of the test as a scientific tool. But the people taking the quiz on facebook aren't mostly people who are considering they might have autism. There is no scientific rigor or determination of who is taking this quiz--the developers of this application have no professional, scientific, or clinical purpose stated in their information.

What do you think it feels like to people who are on the autism spectrum to watch facebook friends dance around this quiz with idle curiosity, making wisecracks and comparing their introverted/extroverted natures to the challenges people with autism face? I don't know, but I don't think this quiz is cute or funny or helpful. And that's all mama bear has got to say on this.

11 comments:

  1. What a well written blog posting. Thank you for this~excellent points, sensitively written. I'll stick to the "Which Muppet am I?" quizes.

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  2. Thanks, Katie. I know exactly what you are saying, as the grandmother of an Asbergian grandson. These "quizes" trivialize and sensationalize very real problems and successes in the lives of folks with these conditions.

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  3. I haven't actually seen the kinds of comments you refer to, Katie, but I have seen this quiz going around and felt a bit uncomfortable about it. Interestingly, I'm not sure I've yet seen a single comment of any kind attached to the posts of people's scores (although that may change), so I suspect my sense of discomfort may be nearly as widespread as the curiosity which leads people to check out such a quiz in the first place.

    You make some excellent points here (as always), and I'm sure all of this is especially troubling for anyone whose life has been touched by autism.

    Perhaps one of the most significant dangers of Facebook--especially when used as a sort of sidebar to all the other things one does during the day--is that it lends itself to mindlessness. We grab a few seconds here and there to slap something up on Facebook or see what others have posted recently before we get back to what we are really focused on and paying careful attention to.

    Your observations are a reminder of the value of mindfulness in all things, including social media. There are so many problems which could be avoided entirely if only we would get in the habit of thinking before acting.

    Thank you, as always, for an excellent post.

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  4. The ten question test my primary medical doctor gave me for depression and also ADD were truly not much better and the prescribe meds from the results.
    Your mama bear instincts are clear and not over bearing, well written and an important commentary on any serious subject posted on any social network site. The problem with stigma over any mental health issue is, mental health is not alone in the arena of ignorance. The lack of compassion, understanding seems to be societal defect of the self-centered, you owe me, American dream of capitalistic greed punctuated the ability of so many to follow the Christian work ethic to the bank after receiving absolution on Sunday.
    As a Mental Health Commision member (non-professional) stigma reduction and public awareness has been most eye opening where we have barely scratched the surface with education and yet compassion for any illness or disability/challenge is on the decrease.
    Thank you for your thoughts, as I personally took the quiz as a quasi self improvement test without consideration. However those who make comments that are insensitive to autism are going to be insensitive to just about any subject of seriousness. It is sad we live in such sordid and evil times. Guess not much has changed in 2000 years.

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  5. thank you very much. that stupid quiz has totally bothered me.

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  6. As a teacher and G-mom of a child who falls in the autistic spectrum, any trivialism of this disease is very discouraging and does the individual and the family a tremendous diservice.

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  7. Good job, Mama Bear. Keep doing what you are doing and supporting those with autism.

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  8. Very thoughtful and helpful piece. I forwarded it to my niece in Tucson who is a special ed teacher. Thought she might find it useful to forward to those who ask her about the test.

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  9. I agree with Lenora, Facebook lends itself to mindlessness and impulsivity. As one who took that quiz after seeing others do it, I felt ashamed not too long after. I even engaged in some back in forth comments about introversion, of which I know a lot about. It was certainly not meant to "equate" autism with anything else. It was actually meant to point out the flaws in the quiz.

    After that, I swore off the FB quizzes. And I will try harder to be more mindful, though I must admit, sometimes its hard to avoid offending by even the most mundane updates and comments. As a result, I don't spend quite as much time on it as I used to.

    Encouraging mindfulness when using social media might be my next campaign. If I have to work that hard to be fully in the moment, I'm sure most users could say the same.

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