So I’ve said to my editor previously, “I would rather not do the whole political commentary thing on issues related to autism.” But then along came that letter. And now a new Facebook app — one that I cannot help but write about.
A few years ago a new ‘quiz’ appeared: people took the Autism Spectrum Disorder (ASD) Quotient Test and then posted their ‘score’ to Facebook. When I first saw these posts I was astonished, angry and hurt. My knee-jerk response was a highly emotional reaction to the discussions taking place on people’s walls – “Hey I only scored 15 on the autism scale? But I’m such a weirdo!” “Hey, how about you?” I sat down and tried to think about why it bothered me so much.
I wrote a rather long diatribe on Facebook about why this quiz bothered me (and much of that original note appears here). A lot of my Facebook friends read it, commented on it and shared it.
I’d kind of forgotten all about it until yesterday, when I saw someone on had taken the fabulous (note sarcasm) new‘Quiz Bone’ quiz “How Mentally Retarded Are You?” — and the other version: “How Retarded/Mentally Disturbed Are You?”
Wow. What an amazing way to spend your spare time — answering a 17-item quiz that’s utterly ridiculous (but it’s a joke! of course!) to share with your friends just how ‘mental’ and ‘retarded’ and ‘disturbed’ you are.
Hey, I’m a fun person. I can be irreverent and even a bit cheeky sometimes. Sure. I’m not a spoilsport and enjoy a good (occasionally even a bad) joke. But aren’t there enough fun and goofy things to laugh at in the world without having to create quizzes like this to amuse your friends and get them to give you the thumbs-up on Facebook? Have we not moved just a tiny half-inch beyond this by now?
There’s an important distinction to emphasize here. The autism quotient test which was posted on Facebook a few years ago is an actual test that you could take online and is reputable, created by autism researchers Simon Baron-Cohen (not this guy) and the Cambridge Autism Research Centre.
But if you take it online, keep in mind that it’s not in the context of clinical support or advice — nor with other kinds of tests alongside it to support investigation. This is not how actual clinical diagnoses are made, period.Furthermore, taking it on your social network and then being asked if you want to “share” your results with your peeps puts a far different spin on it. And one I’m uncomfortable with.
But somehow the ‘How Mentally Retarded Are You?’ quiz is considered just pure unadulterated, old-fashioned ‘fun.’ And with questions such as “Do you know what yarly means?” and “Do you have to do something, leik an ocd thing?” it’s utterly ridiculous.
Facebook apps and online quizzes are, as Chris reminded me when I was first upset about the autism quiz, designed to trivialize everything. In 4 minutes you can find out “what kind of continental philosopher” you are or what “the truth behind your eyes” is. But an app to figure out whether or not you might be on the autism spectrum or whether or not you’re really ‘mentally retarded‘ takes this trivialization too far.
Maybe the Facebook app was aiming to increase autism awareness. Well great, on one hand but on the other hand, let’s be honest: it’s unlikely going to be taken by anyone who truly ‘suspects’ they might have autism. It’s being taken because hey, it’s maybe a bit interesting and fun to find out if your quirky, eccentric reactions to things place you – even by a nudge – onto the spectrum. The mental retardation quiz is almost certainly not being taken by anyone who feels they may have a developmental delay or are behind in their developmental milestones.
Bear with me while I talk about autism awareness for a moment.
Autism awareness, I’m beginning to feel, is a double-edged sword. While it’s great that more people are becoming aware of what it means to have autism or be ‘on the spectrum,’ the awareness movement is much better at promoting images that are palatable and interesting, and avoiding those that aren’t so much. There is not enough acknowledgement that autism occurs on a spectrum and people on that spectrum vary significantly in terms of presentation, functional and cognitive abilities, and appearance, etc.
There’s a lot more awareness of high-functioning, ‘quirky’ types than there is awareness of kids like Georgia – who have marked developmental delays, and are functional in some spheres while not in others. Or even kids far less functional or social than she is. It’s not the picture people are made aware of when it comes to autism, and I know that. When I go to the grocery store, I know that. When I take her out to a public place, I know that. People simply aren’t aware of the kind of autism Georgia has, or the kind of autism many people have, where they are non-verbal or move through the world in spaces outside the norm.
In essence, autism awareness right now is pushing a kind of meta-narrative about autism. As a university professor, I spend a great deal of my time pointing out to future health care professionals the dangers of viewing meta-narratives as pure fact. The truth is, there isn’t just one reality of autism just as there isn’t just one meta-narrative about what it means to have cancer, or to have diabetes, or to be blind, or to live in poverty, or to be a paraplegic, or to be in love or to be an adolescent.
Temple Grandin, ‘Rainman,’ the quirky, eccentric smart guy who lives on your street whom you suspect is ‘a bit’ autistic – these are only a few select images in a vast array of narratives about what it means to be autistic. There are so many different ways in which autism presents that to claim there is one ‘gosh, so fun and quirky’ way to think about it is very convenient and very wrong.
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Let me assure you: Georgia is fabulously fun and quirky. Her eccentricity and way of being in the world is something from which I take endless joy and inspiration. Her unique experience of almost everything means that I have a truly once-in-a-lifetime opportunity to see the world in totally different ways than many people ever do.
But would I rather she know how to tie a shoe at age 14? Would I rather she not be glared at in grocery stores? Would I rather she not be stared at with puzzled expressions at the movie theatre? Would I rather she had a clear opportunity maybe to go to university or have a more independent life? Would I rather not worry on a daily basis about who will look after her once I’m gone? Would I prefer to not have to jump in and say, “Oh, she’s autistic” to explain something people can’t understand, to reassure them and make them feel ‘okay’ when Georgia is barking because she’s happy? Yep, I would.
So the whole ‘fabulously quirky’ thing is great. The rest is, as they say, the price of admission. It’s a frighteningly high price on some days though, for many people with autism or family members who have autism.
The ASD Quotient Test – the one that Facebook promoted a few years ago – is a 50-question Likert type scale that aims to identify those who may meet the diagnostic criteria for autism spectrum disorder. It isn’t a means for making a diagnosis but it is a way to see if, hey, you might just ‘be diagnosable.’
Let me tell you what a real autism diagnosis is like.
It’s a little more complicated than answering 50 questions one bored Saturday afternoon at your laptop while playing Farmville in another window. For Georgia and me, it involved putting a mostly non-purposefully communicative four-year-old through 2-3 days of testing, which was prohibitively exhausting and incredibly frustrating. Then an MRI. Then a couple of weeks of waiting. Then a meeting with two psychologists, a developmental neurologist, and a bunch of fascinated residents and interns.
And me on the other side of the desk, alone. And Georgia (who was still unable to walk independently) at my feet, more the eternal toddler than a four-year-old, completely unaware of what was going on around her in the room. There was a discussion of how fascinating her MRI was and how interesting that she was functional at all without very much of the white matter we all have. The white matter that helps us put things together on many levels. A diagnosis. A grim prognosis. And a frighteningly insensitive and anachronistic reference to institutionalization from one of the residents.
I almost never have days or even hours when I feel the way I did at the time of diagnosis, not anymore – but I do have days when I’d rather not have gone through any of that. But that diagnosis changed her life and mine in the most profound way possible.
50 questions (or 17) just won’t do that, and let’s not pretend it does.
What is the real value of taking the Autism Quotient Test on a social networking site? When you get your score, are you supposed to say to yourself under your breath: “phew!” or maybe: “cooool!”? While I will promote the idea that my own favourite kid is the epitome of cool (and those of you who really know me, you know I do believe that), I wholeheartedly refuse to buy into the rhetoric that autism is totally and completely cool. I simply won’t.
Don’t get me wrong. As I’ve said many times, I have the coolest teenager I know. Georgia is cool. Her autism? Frankly, it’s just not as cool as she is.
I take a tremendous amount of joy — and just simple fun — from being with Georgia, and having her as the biggest part of my life. She’s warm, funny, mellow, kooky, hilarious, musical, brave, endearing, genuine, real, touching, interested, smart and compelling. Would I rather her be all of those things and not autistic? Not an easy question to answer. I would however like to just tweak the rest of the world a bit, I guess. Starting with a few FB apps.