Think about those mornings when you’re rushing out the door, throwing on your coat and sprinting to catch the streetcar. You get on and find yourself crowded sardine-like, standing face-to-face with fellow commuters for the 20 slow blocks to work.  All the while aware of that icky, bunchy, must-must-must-readjust feeling of your shirt sleeve pushed up well beyond your elbow in your haste to put your coat on.

I hate that feeling – perhaps a whole lot more than other people, I’m realizing – and so I always take time to grasp my shirt sleeve firmly as I plunge my arm into that coat.

Feeling a bit weird about how much I dislike this feeling, I googled “when your shirt sleeve gets bunched up when you put your jacket on” … and found a Facebook page called “I hate when you put on a jacket and your sleeves get all bunched!!” with 777 likes. So at least there are 776 other people who dislike this as much as I do. And it got me thinking. There’s a reason that there are sweaters with those thumbholes on the ends of the sleeves: to keep the sleeve. Pulled. Down. Beautifully.

Over the years of caring for Georgia, I’ve learned just how much planning, gross and fine motor skills the simplest tasks require. Trust me, these things take up more time and subconscious mental effort than you think. There are tasks that most of us carry out easily, without thought or planning: unfolding a pair of pants placed in your drawer inside out in order to pull them on, fixing your undergarments just so and — yes — that automatic motion of grasping your inner sleeve while you pull on your coat, so that the sleeve doesn’t end up around your elbows. All these things that most of us do intuitively and without active planning – most often very naturally.

Today, I tried to figure out how I learned to hold my sweater sleeve while putting my coat on. I don’t remember someone showing me. It just made sense and it worked – and I adopted it as a practice and adapted it to a variety of contexts: parkas, raincoats, jackets and cardigans. Looking around, I also noticed that everyone does some version of this — and it gives me pause. Who taught us? How did we learn this seemingly minor mundane task?

Think about all those fasteners on the clothes you’re wearing today.  The buttons, the zippers, the toggles, the Velcro, the drawstrings, snaps, hook and eyes, the buckles and frog closures. It’s exhausting! I’ve never thought much about it, but try to count all of the different kinds of closures you operate efficiently on a daily basis without thinking about it.

Until you don’t operate one properly. Oh yeah. Ever arrived at work with your sweater buttoned unevenly, or entered a meeting with your dress unzipped, or sat with your higher-ups with confidence and your fly undone? Been there. I’ve even done the whole skirt-tucked-into-the-back-of your-tights-while-walking-across-the-university-campusthing, a memory that makes me shudder all over again. Total mortification.

It’s important to know how to do these things up in the morning to ready yourself for the world. It’s also important to realize that you monitor these things during the day (Nancy, skirt still outside of tights? check). Finally, it’s important to know how to get these things undone at the end of the day so you can take leave of your clothes. Skills most of us just do. We don’t think about them, spend time of them or give them a second thought. We throw our clothes into the dirty laundry bin and without further ado, move forward through our lives.

In addition to thinking about and watching how Georgia does things, I have had the distinct advantage of working with occupational therapists (amazing people — really) who helped Georgia develop skills in the activities of daily life, and who have also helped me to understand the serious challenge many of these seemingly minor mundane tasks present for individuals who have motor planning problems. These are the things you and I do all day to keep ourselves washed, dressed, fed, hydrated and, well, appropriately hygienically maintained – basically what we do to keep ourselves alive and well. Not to get too graphic here but just think a moment: How did you learn how much toilet paper to use? You probably figured it out, for better or worse, through trial and error. You use as much as you need and well, you do a quick unconscious mental calculation about how much to take each time you find yourself in that situation.

But for Georgia, who does not have that innate ability to figure this stuff out and to be both flexible and attuned to the complexities of each individual situation while also keeping general principles in mind (e.g., don’t use too much toilet paper or you’ll clog the toilet/don’t use too little/don’t finish the roll unless you see another one to replace it) it is something we actually have to teach her.

It is the shared task of our fabulous Occupational Therapist Lisa and Chris and I to help Georgia learn 1. how much toilet paper to use and 2. how to apply that learned skill and reasoning to times when we might not be there and she has to wing it. Never mind that there are millions of different types of toilet paper dispensers out there in the world, which likely constitutes a few more weeks of lessons. We’re just focusing right now on how much to take and how to tear it off.

We’ve considered using duct tape (Lisa’s brilliant suggestion). Not on Georgia – but to make a mark low on the wall to show how far to pull the toilet paper down and tear it off at the mark. It’s actually a brilliant suggestion. I giggled at first, but after experiencing Georgia attempt to use a single sheet to do the trick and also jettison an entire roll merrily onto the bathroom floor, I was willing to try. We’ll keep you posted (or not).

If I didn’t have Georgia, I would never look at an activity like that with such intensity. I’d just do it and NOT talk about it. But having Georgia around and wanting her to learn and be more independent means that I find myself inevitably taking apart the most straightforward activities as if they were complex military maneuvers. Breaking then down into steps, articulating the challenges and then putting mitigating strategies in place. Figuring out what needs to be learned, creating strategies to teach, and setting clear and progressive expectations.

Then trying it out. Failing. Drawing up a new plan. Marching forward. You know.

One thing that’s hard to teach her is why these skills are important. I’m really not clear on how much Georgia values her independence in the context of ‘doing stuff for herself’. She is wildly and fiercely independent in terms of wanting ‘to be alone’ to listen to her music or to play on her computer, but if you are offering to make her a sandwich, she’ll totally have one, thanks. It’s really tough to push her to help make a sandwich some days when she does know that if she doesn’t make her own sandwich, she’ll eventually get fed something. I’m so used to doing ‘for her’ that I’ve sometimes neglected to teach her how to do ‘for herself’. I’m also painfully efficient and (okay, okay) impatient occasionally with inefficiency, so it can be challenging for me to be comfortable with Georgia taking a good half hour to get dressed when I could just help her do it in 5 minutes and get it done. That’s something I have to work on – to resist the urge to help and to help to be more efficient. I have to learn to give her time to do it without my help. Trust me, it can be excruciating, watching someone try so earnestly to do up the button on a pair of jeans: concentrating, working, trying. The urge to help is overwhelming at times, and becomes that much more difficult to resist when, inevitably, she pulls her finger out of the buttonhole, sighs, declares “It’s soooo tricky. I need help.” and flops down on the bed. It is then that I hear Lisa’s voice in my head: “You know, she really can do it. She’s actually getting good at it. You just have to give her time. And NOT help her.”

Teaching her how to do up that button on her jeans after years of doing it for her requires also teaching her that it is both valued and important for her to do this herself. This means teaching her, somehow, about that nebulous abstract inherent value that exists in dressing yourself, in making your own food and, as we all know, tearing off your own damn toilet paper – as much as you need and want! I have tried the old “Other 14-year-olds dress themselves, Georgia – and so you should too…!” without much success. Keep in mind this is someone who isn’t overly motivated by the prospect of conforming to social norms. (Remember: barking in public is just fine.)

I often think of my mom who, when I was 14 and wanting to do what other kids did and wear what other kids wore, often told me, “Well if all the other kids jumped off a bridge, would you do that too?” I’d roll my eyes with the well-practiced skill of a tween, sigh a giant sigh and mumble just out of earshot, “Yeah, maybe …”

Now I’m the mother of a 14-year-old, pleading with her to “Please, do what the other kids do! Want what the other kids want!”

I know I’ll be helping Georgia for a long time. I’m her dresser, her bather, her hairdresser, and her personal assistant. I’m the Velcro fastener, the zipper-upper, the driver. I am the aesthetician and masseuse, the maid and the cook. I am the closer of all things. I buy her socks, help her put them on and take them off, wash them, fold them and put them on again. There’s a comforting cycle to all of this.

But like all cycles in nature, there has to be balance. The balance in this is finding where her role waxes and mine wanes. My challenge: to step back and force her take on the tricky. To take pride in seeing her going out the door more than just slightly unkempt but independent, to be satisfied with an autonomously undone zipper or a cardigan freely but unevenly buttoned up.

To be comfortable with the untrammelled skirt caught up in the tights. But ask me to be okay with the self-reliant, self-created, bunched-up sleeve in the jacket? Ohhhh never. 

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.

* * *

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.