Tag Archive | Asperger’s syndrome

Human as a Second Language: “Definitely” means “never”

The other night I was out for dinner with my friends Critter and Varmint (Aspie-positive NT life forms) and we got to talking about the many ways humans have of wiggling out of commitments.

One of these ways is the use of the word “definitely,” which, after some extensive observation, I have concluded actually means “never.”

We should definitely ... never mind.

We should definitely … never mind.

And combined with any or all of the words “should,” “sometime,” “check it out,” and “try,” you can be sure that the get-together you’re discussing (or the hairdresser/book/movie/whatever that you’re recommending) is just not going to happen.

For example, if you’ve met someone in a social situation and get to that point in the exchange where you’re negotiating another get-together, and the person says “Yes, we should definitely try to get together for coffee sometime,” you can rest assured that coffee will not be had and that person will forever remain an acquaintance.

This can be puzzling and downright hurtful, and especially so for Aspies, who, to put it bluntly, live in a world of misunderstandings and frequent rejections. It can be tempting at this point to become angry at the other person, and to take such a blow-off personally — in other words, to condemn the other person and to assume this is a reflection on you personally. To explain why this is not actually a valid or useful response, I will borrow from the teachings of The Big Bang Theory and of Cognitive Behavioural Therapy (CBT), of which I am a huge fan.

This definitely sucks, but I shall accept it as a social convention.

This definitely sucks, but I shall accept it as a social convention.

First of all, there is no hard-and-fast rule stating that the other person must get together with you simply because you want this to happen (that’s the CBT rational thought, there). NTs are not as direct as Aspies can be (sometimes this is a good thing and is known as “manners”) and will often find a softer way of saying, albeit obliquely, that for whatever reason, they’re not interested in or able to commit to getting together with you at this point.

Second, the whole “we should definitely get together sometime” thing is actually part of a social convention that a lot of NTs follow. This is something I’ve seen often on The Big Bang Theory: Sheldon (arguably an Aspie) is quite often stopped in his argumentative, insist-y tracks by being told that certain things (e.g., the giving of birthday presents, or attending dull faculty wine-and-cheese parties) are simply non-negotiable social conventions and he needs to suck it up and play nice.

In this instance, the use of the words “definitely,” “should,” etc. is the NT’s way of signalling that your social exchange is coming to an end and it’s time for you both to go find someone else to talk to, or change the subject.

The subject of what constitutes an acceptance is a bit more complicated (OK, a lot…) but briefly, for the sake of comparison here, I would say that the suggestion of a date, time, and place (“OK, how about next Thursday at The Wobbly Duck Cafe? Does 2:30 work for you?”) and the exchange of contact information are signs that the other person is interested in furthering your acquaintance. (Needless to say, you can really overthink this, as Sheldon infamously does on the episode called “The Friendship Algorithm.”)

So, your two lessons are: first, know when you’re being blown off. Your clues are the use of the word “definitely” and the presence of any or all of the words “should,” “sometime,” “check it out,” and “try.” This is your cue to stop asking and move on.

Second, know that encountering the dreaded “We should definitely try to get together sometime” is not something you should take personally or use as a cudgel to beat either yourself or the other person. Rather, you are engaging in a social convention in which another person is trying to let you down gently. Let them. And find someone else to have coffee with.

~A.G.

You can definitely over-think the whole friendship thing. Let's try not to do that.

You can definitely over-think the whole friendship thing. Let’s try not to do that.

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Bullying: it’s not just for kids

This is a hard piece for me to write. No one likes to admit they were a victim of bullying (if the number of “anonymous” kids writing into The Globe and Mail about that topic lately is any indication). Also, there is always the fear that someone will pipe up and say “You asked for it, Weirdo” and proceed to tell me how.

But because bullying – and the number of young people killing themselves because of it – is in the news so much these days, I feel like I need to step up and say, loud and clear, that bullying is not something that magically stops at graduation: adults do it too.

In my case, I was bullied more or less constantly at a job I held for three and a half years, until my contract recently (mercifully) ended in September.

I will say that this was not part of a pattern for me; I was not bullied at school as a child (despite being a bit of an “oddball,” due to having Asperger’s, and despite being abused at home, which often sets kids up for a lifetime of victimization). Nor was I a bully myself. As an adult, I am still a bit of an oddball, and although there have been some bumps in the road, I am incredibly lucky that the vast majority of my experience, career-wise, has been positive.

Also, in the case I’m talking about here, I actually did (very reluctantly) what all the anti-bullying texts say to do: I went to my supervisor and talked to her about what was happening – not just to me but to a couple of other people who were getting picked on and excluded. She smiled and nodded but told me that the two women who were at the centre of most of the incidents had been an “ongoing” problem for years and, sorry, there was really nothing anyone could do. Shortly after that, someone told me that she is actually good friends with both of them, so I probably inadvertently made things worse for myself – sadly, one of the reasons that people who are being bullied don’t often speak up.

I will not name the place I worked, or the people involved; those details are not germane to this story. My point here is that when we talk about bullying, we need to remember that behaviour that is not dealt with in childhood simply carries on into adulthood, into offices and onto factory floors. The people who bullied me at work were probably bullies when they were younger; I don’t know.

Regardless, whether you’re nine or 29 or 59, being bullied makes you feel helpless, ashamed, angry, and achingly lonely. We humans, Aspergian or not, are social animals, and being excluded from the herd, or having the herd turn on us, is painful, often beyond bearing. A friend of mine killed himself after being bullied at another job; I came very close to taking my own life this summer.

What follows here, by way of illustration, is an excerpt from my journal, written the day after my contract ended. I have thought long and hard about including something like this in a blog. Even my friends don’t know much about what went on in my head during this time, although they knew I was unhappy, and I am a bit nervous about the results of this little exercise in “coming out,” as it were.

But every time I hear about another young person ending their life because of bullying, every time I think about my friend who walked out to the O’Connor St bridge early one morning and jumped, every time I hear my friend K reminding her young teenagers to be kind to their classmates and not join in mobbing on MSN or Facebook, I realize I need to speak up and add my voice to the discussion.

And so, here goes.

September 3, 2011. A friend just asked me if I had a nice send-off from work yesterday. Ha. No. … No one really bothered with me.

I am hard-pressed to say what I feel about this. Sad probably. Humiliated at being so flagrantly ignored and discarded like that. Unsure of myself again – as much as I try to be brave, rejection (and such a cruel one) really makes me feel awful about myself.

What a terrible experience. It made me feel like a hooker, staying there for the money … .

I honestly don’t know how to frame any of this. All I know is I feel very low. Maybe angry too. Ashamed and possibly afraid like when people laughed at me when I was a kid. You know people are picking on you and that a computer-like “Bullying Sequence” has started, but you are powerless to stop it. They don’t even see you as human, as someone with feelings or a brain, or things to offer: now you’re just an It.

[At work], I was something to be “put up with” because I got the work done. But I was not someone to be included in parties or birthdays, no matter how I asked. (And then I stopped asking.)

It really hurt when I’d go in on my own birthday and no one even acknowledged it – while everyone else’s got celebrated. It reminded me of being a kid and having my birthday ignored [by my parents].

And I would feel so foolish and angry when they wouldn’t give me a desk and I had to stand there like a beggar every morning, holding my coat and my papers, asking for space to work, while people rolled their eyes and acted like I was a real pain in the ass.

And S., C. and K., giggling at me (and, let’s face it, a lot of others) behind my back.

It is hard to have people hate you, mistreat you, and make fun of you, and not know why, or what to do about it. …It just makes me feel like such a loser because I can’t imagine [any of my friends] getting bullied like that. Or putting up with it.

…[Another friend] told me today that it had little to do with me. In my head I know that, but it hurts me and makes me ashamed that I let them do it, and for so long.

But they are the ones who should be ashamed. They knew what they were doing – to me, to the others who didn’t quite fit in – and they kept at it. S., C., K., N. and even do-gooder L. who tried to be everyone’s friend….

I don’t know whether it’s a [media] thing, whether that industry attracts big egos. It does, but I did fine at [another media outlet] because I was valued for my work: writing and research.

I guess bullying can happen anywhere. I was privileged to work at [my previous job], where bullying wasn’t even on the radar. There, again, I was valued for my work and my sense of humour and my (admittedly quirky) intelligence, and our department was close-knit and no one got excluded or left behind. Maybe that’s because it was a charity/non-profit. I don’t know.

All I know is that the people at [this place] are evil…. They’re hurtful, childish and nasty. Even I, with bloody Asperger’s Syndrome, know better than to hurt people the way they did me. …Even with AS, I did my best to try and figure it out – being friendly to them, asking about their kids, vacations, home renovations, house hunting… and no one ever asked me about myself in return. I simply didn’t exist.

And no, I wasn’t overcompensating or being obsequious – my overtures worked with lots of people in other departments there, and I made some good friends who also asked me about myself, asked me to do things with them, seemed to care about me as a person.

But the [people in my own department] closed ranks on me almost from the outset. I attended meetings and eagerly pitched stories, many of which were turned into on-air segments. But I was never asked to work on those segments, or even learn how, and on the one occasion I did ask to go along on a shoot (at my own expense, on my day off), I was not “allowed.”

They knew my skill set – but did nothing with it.

When I had that awful bike accident, I had exactly one day off – without pay.

Three of my birthdays passed with no acknowledgment from anyone, even though they have all my info on file. “Oh, we don’t celebrate contract birthdays,” [one producer] told me snottily when I asked why I kept getting ignored.

The rest of the staff would leave early on Fridays to go drinking together. I’d poke my head up out of my cubicle and realize I’d been excluded again.

The staff got Olympic goodie bags – shirts, mugs, pens, mouse pads. Nothing for me.

Basically it’s been three and a half years of being told “fuck you” at every turn. Passed over for [a promotion] last summer, laughed at behind my back, told my job was being downgraded to overnights and weekends….

Sure, it paid the bills, but at what cost to my (always precarious) self-esteem and my pride, letting myself be treated like garbage, like a nobody; going in day after day knowing they were laughing at me, and that a high-school-level job was the best they would ever grant me. I thought I could ignore being ignored and shunned, but I was painfully aware of it, every minute of every day.

And how humiliating to have friends ask why I put up with it, and to say “it pays the rent.” That’s no better than prostitution. And at least with prostitution you don’t have to see the person who fucks you ever again.

So shame on them, and I guess partly shame on me for letting them. For whatever reason, it was a match made in hell, and I hope I never put myself in a situation like that again. Those people will keep on doing what they do best…and ganging up [with management’s tacit approval] on anyone who doesn’t fit into their creepy, empty-smiling ranks.

And I will go (limping a bit) back toward the people who like me, who want me in their herd, who value the work I do and actually seek it out.

I will try to forget it, all of them. I will try to forget quietly slinking out the side door, alone, at the end of my last day. I will try to forget all the lunch hours I spent crying in my car or walking off my frustration out in the woods.

And I will try to learn from this. It’s easy to say “Run from a red flag” but hard when that red flag has cash attached.

Is any job worth being treated like that?

Probably not.’

The Ten Unwritten Rules of Social Relationships

These deceptively simple little gems are taken from an excellent handbook by Dr Temple Grandin and Sean Barron, both of whom have autism, called Unwritten Rules of Social Relationships: Decoding Social Mysteries Through the Unique Perspective of Autism.

What to do, what to do...?

The book is worth a look for anyone living with autism/Asperger’s, as it provides some good basic “signposts” about manners, expectations, and how to keep frustrations and misunderstandings from blowing up into full-on thermonuclear war, emotionally and socially speaking. I wish I’d had a copy of it when I was a teenager and young adult, as it probably would have saved me a lot of time and energy in terms of trying to decode the behaviour and motives of people around me, and simply figuring out how to behave.

My favourite, and one I am still learning (even at my age) is Number 6, that not everyone who is nice to me is my friend. Sigh. 😦

Hope these are helpful!

The Ten Unwritten Rules of Social Relationships

Rule #1  Rules are Not Absolute. They are Situation-based and People-based.
Rule #2 Not Everything is Equally Important in the Grand Scheme of Things.
Rule #3  Everyone in the World Makes Mistakes. It Doesn’t Have to Ruin Your Day.
Rule #4 Honesty is Different than Diplomacy.
Rule #5 Being Polite is Appropriate in Any Situation.
Rule #6 Not Everyone Who is Nice to Me is My Friend.
Rule #7  People Act Differently in Public than They Do in Private
Rule #8 Know When You’re Turning People Off.
Rule #9 “Fitting In” is Often Tied to Looking and Sounding like You Fit in.
Rule #10 People are Responsible for Their Own Behaviors.

An Aspergian’s Guide to Yoga

There is some anecdotal evidence that yoga is quite helpful for people with autism and Asperger’s Syndrome. Since I started taking yoga classes last year, I have noticed a lot of changes and improvements in myself, some related to AS and some not. In general, I am more flexible and coordinated. As far as AS goes, I have noticed that my frustration tolerance is greatly improved, my eye contact is better, and I have fewer meltdowns.
This is enough to keep me going back, and it may be a reason for you to try it for yourself!
So, here is a brief (and by no means exhaustive) guide to Yoga for Aspergians.

Benefits:

  • improved flexibility and coordination
  • better focus and concentration through learning to follow instructions
  • better balance and body awareness, e.g., left side, right side, hand and foot placement etc.
  • improved frustration tolerance = fewer meltdowns, more patience with others and self
  • feelings of sociability and being “part of something,” through being in a group, even if not interacting directly with others in the class
  • calmness, reduction of “fidgety-ness”
  • reduction of aggression and impulsiveness

Triangle pose -- you'd be surprised how easy this is!

General, Getting Started:

  • Check out a few different yoga studios and gyms before you decide to join one. Take a friend or someone you trust along with you, if a second opinion is helpful.
  • Staff at most studios will be very happy to show you their facilities and let you have a look around. I recommend this step, as it helps avoid surprises and unfamiliarity.
  • Staff will also explain the different styles of classes available and help you select which one(s) are best suited for you. For example, Ashtanga is fast-moving and athletic, whereas Yin classes are very slow and quiet.
  • Many studios (including mine) offer a special “introductory price” – for example, unlimited classes for a week for $20. This is ideal, because you can spend the week checking out all the different styles of yoga and the different teachers to see which suits you best.

Clothing and equipment:

  • You’ll need a pair of shorts or yoga pants, and a short-sleeved or sleeveless top that is fairly form-fitting: you want something that will stay put as you move around. Ask at the yoga studio if they sell appropriate clothes; sports stores, or even Winners, are other good places to buy these things.
  • Cut the tags out first and wash each item before you go to your first class. Wear your new outfit around your home a bit first so that you’re used to the feel of it – you do not want any itchy or floppy surprises in class!
  • A water bottle is a good idea. I use a plastic “squirty” bottle for biking so that I don’t have to unscrew a lid in class.
  • In cooler weather, you’ll need a shirt or jacket to wear over your yoga gear as you arrive and leave.

Hygiene:

  • Make sure you are wearing clean clothes and have had a shower and brushed your teeth.
  • Avoid wearing perfume, cologne, body spray, or strong-scented grooming products. Students are very close together in a yoga class and nobody wants to smell anyone else, good or bad.

Non-negotiable conventions (to borrow a phrase from Big Bang Theory):

  • You must be quiet and respectful in a yoga class, and listen to what the teacher is instructing you to do. Laughing, talking during class, or engaging in obvious “stims” are not OK.
  • Some people are very serious about yoga. Even though this may not be the case for you, act the way you would in a church, synagogue, or other house of worship, and be respectful of the teacher and the other students.
  • If you must leave the classroom to go to the bathroom, or to take a “breather” if you’re overwhelmed, do so quietly, without disturbing other students. Be very quiet when you return, and simply catch up to what the other students are doing. There’s no need to ask the teacher for permission to leave.

Before class starts:

  • Avoid eating for an hour or two before class. It’s best to have an empty stomach when you work out.
  • Make sure to use the toilet before class.
  • Plan to arrive about 15 minutes early. This gives you time to change (if needed), find a spot in the class, and get yourself oriented and ready. Most students sit quietly on their mats, facing the front of the room, and some lie down and close their eyes. Do what feels best for you.
  • If you haven’t met the teacher before, you may want to go introduce yourself to her/him. If they’re a regular instructor, they’ll know you’re new and they may ask you some questions about any injuries etc. that you may have.
  • If you don’t like being touched, now is the time to politely inform the teacher that you’d prefer not to be “adjusted.” Yoga teachers often “adjust” students gently during a class to help them do a posture more correctly; if you don’t want that, that’s perfectly OK. Just let the teacher know beforehand.

During class:

  • When everyone is assembled, the teacher will close the door, go to the front of the room, introduce him- or herself, and the class will begin.
  • If certain pieces of equipment (blocks, belts etc) are necessary, the teacher will either hand them out or have students go get their own.
  • Follow along at your own pace: don’t expect to be perfect (or a disaster!) your first time out. Do your best. Everyone is a bit nervous and uncertain the first time. This feeling will pass.
  • You may feel self-conscious at first, but this will soon fade as you begin to focus on the postures. Remember, no one is really looking at you or judging you – they’re all too busy trying to do the postures themselves! You will see people who are fatter, thinner, flexible, not very flexible, younger, older – everyone (including you) is just there to do their best.
  • If you’re not sure what you’re supposed to be doing, have a look at the teacher, who will be demonstrating the pose. Also, discreetly look at the other students (don’t stare) and try to imitate what they’re doing.
  • If you really can’t do a posture, don’t panic. Do your best imitation of what the others are doing (without hurting yourself) or politely get the teacher’s attention and ask for help.
  • The teacher may walk around the class looking at each student and doing “adjustments,” or changing the music in the CD player. If you’ve indicated that you don’t wish to be touched, don’t be nervous: he or she will pass you by, although they may walk near you to get to someone else.
  • In some postures, the teacher will ask students to close their eyes. If you don’t like doing that, don’t. I almost never do. Instead, I focus on the lights or the ceiling fans, or one of the fixtures on the walls. Yoga studios have lots of things to stare at if you’re bored or overwhelmed.
  • There will be music (chanting, Indian music etc.) playing softly for most classes. This may be distracting or “weird” at first, but over time you will become used to it. If it really bugs you, try focusing on something else – for instance, if you are musical, try focusing on the beat or the chord changes. Otherwise, think of something you enjoy (I think of animals or numbers).
  • You may be asked to sit or lie in one position for long periods of time (up to 5 minutes), and this means you may get bored or find your mind wandering. I try to prevent this by looking up at the lights or thinking about numbers, or imagining that I’m looking down through a video camera at my feet walking on a railway bed. Do whatever works to keep yourself still and quiet – you will get better at it.

Toward the end of class:

  • The teacher will begin to wind things down toward the end of class; the moves in a fast “Ashtanga” class, for example, will become slower and more relaxed.
  • The class will end with students lying on their backs in “corpse pose,” or Savasana (pronounced “sha-VOSS-ana”). The teacher will turn the lights down (or off, if there are candles) and usually turn the music off as well. Students lie on their backs in a kind of a “star” pose, with arms away from the body and legs parted. You will do this for about five minutes. Again, if you feel restless, focus on a certain spot on the ceiling, or a ceiling fan, if they have them, or think of your feet moving on a railway bed. Whatever it takes.
  • At the end of the allotted time, the teacher will softly ring a little bell (they use three single “dings” at our studio) to signal that it’s time to end. Even though it’s quiet, this may surprise you a bit the first time it happens.
  • Students are then asked to stretch out (after lying still for so long), roll to one side, and then sit up cross-legged facing the front of the room.
  • Everyone places their hands together in front of their hearts, and the teacher may say a few “words of wisdom.” This looks and sounds a bit like a prayer. If praying/religion are not your thing, sit with your hands together anyway and think of something else. Myself, I think of an animal or insect I particularly like, and imagine cupping it in my hands. While the teacher is talking, I think some friendly thoughts towards the animal — today I thought of a horse I liked very much when I was in my 20s.
  • At the end of the teacher’s “words of wisdom” he or she will say Namaste (NOMMA-stay) and bow toward the floor. If you don’t feel comfortable doing that, stay respectfully quiet and continue with your own thoughts. I sit quietly and then open my hands and place them briefly palms-up on the floor as if I am “releasing” the animal I’ve been thinking about.

After class:

  • After “Namaste,” class is over. The teacher will thank everyone for coming, then get up and go turn the lights back up a bit.
  • Students will begin to tidy up their mat areas; this means returning any equipment (blocks, belts, bolsters etc) to where it came from and usually spraying the mat down with a nice-smelling disinfectant the studio usually supplies. Watch what other people are doing and follow suit.
  • If you have a specific comment or question for the teacher (and many students do), this is the time to line up and speak to him or her. Otherwise, a polite “Thank you!” as you head out the door is appropriate. If it’s your first class, the teacher may also “check in” with you and ask you how you liked the class. Keep your feedback brief and polite.

Miscellaneous:

  • To tell or not to tell? You may want to tell the staff you have Asperger’s Syndrome, or you may wish to keep that private. Or you may wish to wait till later, until you know the teacher(s), before you give that information. It’s entirely up to you.
    • Pro: It can be very helpful for the staff to know that you have AS – it may help them to understand what’s going on if you find yourself having trouble and getting frustrated. Many yoga teachers are very aware of “special needs” and “alternate therapies” and disabilities, and will be happy to know your situation. I told one of my teachers, who happens to work with special-needs kids, and now she will often come over to my mat during class to help me relax a bit more.
    • Con: If you don’t like people having private information about you, or you’re worried about being treated like you’re “special” or being made fun of, you may want to keep your information to yourself. Some people are simply very private, and that’s fine.
  • Dealing with problems in class:
    • Pee-yew! Somebody stinks! You’ll know before class starts if someone’s perfume (or whatever) is too smelly for you to tolerate. Pick a spot far from that person if you can. If the perfume (or whatever) is too overwhelming, you may need to decide not to attend that class – this is disappointing, but simply pick up your belongings and leave discreetly. The staff will want to know what happened, though, and you can politely tell them what the issue is so that it can be dealt with. Most yoga studios have policies about perfume, so they may simply need to send out a reminder about it.
    • Toots, burps, snores, and gurgles: Every so often, someone farts in a yoga class, or their stomach rumbles. It happens – people are twisting and lurching around, and sometimes the inevitable happens. It can be very hard not to laugh, though: my remedy is to press my lips together and look at the floor, or think of something very serious, like math. Same for when someone falls asleep during Savasana and begins to snore: ignore it and think of something else. Who knows – it may happen to you!
    • Bad Asperger Day: If you are having a “bad Asperger day,” you may want to let the teacher know beforehand if you don’t want to be touched or adjusted today, or (if the teacher knows you have AS), that you are struggling a bit and may need to step out. Sometimes just telling someone is a big help. Also, I have found, to my utter astonishment, that I can go into class feeling really awful — and the bad mood will fade away in about 10 minutes as my body starts relaxing. Conversely, I have also had to quietly step out for a few minutes to rest somewhere quiet and “glue my feathers back on,” as Daffy Duck would say.  Every day is different, and every class is different; with time and patience, you will figure out what works for you.

That’s all for now. Feel free to email me with any specific questions you have, or to let me know how things are going. Happy yoga-ing!

Other yoga-related material on this blog:

Yoga is My Squeeze Machine

Yoga/Squeeze Machine Update

There really is a "frog pose"!

I can has Asperger?

(With sort-of apologies to I Can Has Cheezburger?, one of the funniest websites around.)

April 2 is World Autism Awareness Day and unless you’ve been living under a sheet of plywood since the 1980s, it’s probably safe to say you’re already “aware” of autism, per se.

But what you may not be aware of is the number of adults with Asperger’s, or so-called “high-functioning autism,” actually living and working among you.

In the last few years, there have been loads of news articles, research breakthroughs, movies (like Adam) and books (like Stieg Larsson’s trilogy), about Asperger’s and autism. But despite all this, most people still have no clear idea what Asperger’s looks like when it’s out and about. They picture Rain Man (who was actually an autistic savant), or a lonely train-spotter on a railway overpass. Or they just say, “How awful.”

Lucky for you, I love nothing more than smashing stereotypes to smithereens, so I’ll walk you through the basics. Besides having Asperger Syndrome myself, I happen to know a couple of others who have it, and in honour of Autism Awareness Day, I will tell you a bit about us.

A caveat here: as Asperger expert Tony Attwood says, “Once you’ve met one person with Asperger’s, you’ve met, well, one person with Asperger’s.” Not all people with AS will have all the symptoms; there are some core difficulties, namely with communication and social interaction, but the rest is really the luck of the draw, dependent on circumstance, upbringing, age, experience, and a pant-load of other factors that researchers are still investigating. (“Pant-load” is a scientific term meaning “bucket.”)

First up is my friend Chris. If you passed him in the street you wouldn’t look at him twice. Actually, you might – he looks like Woody Allen. He’s absolutely brilliant, although he did poorly in school because, like many kids with Asperger’s, he has trouble with authority figures and with following rules and instructions. However, he taught himself Latin (I’ll give you a moment to digest that) and if you want to know how Julius Caesar would have ordered his supper, or are unsure of the wording of a particular scene in Monty Python’s “Holy Grail,” Chris is your guy.

Like Chris, my friend John did poorly in high school – again, the problem with authority, rules and instructions. But he is a whiz with a guitar and taught himself to play so proficiently that he was accepted to the graduate studies program at the Royal Conservatory of Music in Toronto. He’s travelled all over the world and currently teaches in Asia. He is soft-spoken and thoughtful, full of ideas about Buddhism (he stayed at a monastery in Thailand for a month last year), and when he comes to Toronto his social calendar is so packed that he struggles to slot me in.

I’m actually the odd one out, here: Asperger’s is unusual in girls, although researchers are now taking a closer look at the different ways that girls show – or hide —  the symptoms. Unlike Chris and John, I did very well in school, and had no trouble with authority – typically, girls seem to be a bit more adept at pretending to fit in. A very strict upbringing helped, something Temple Grandin, arguably the most famous person with autism on Earth, agrees is a must for kids with Asperger’s: knowing the rules and how to interact politely with others helps to provide much-needed structure and lay the foundations for social and eventual work-related interactions.

(I previously published this last year in another part of the blog under a pseudonym. It was only about a year after I’d been formally diagnosed — although I’ve known it for decades — and I was worried about the effect it would have on my career and my friendships if people knew I was an Aspergian. Now I’m a lot more comfortable with it, and most people who know me have either been told or figured it out anyway.)

Anyway, as with Chris and John, you probably wouldn’t notice me in a crowd; as an astute friend and teacher of mine said a couple of days ago, Asperger’s is a “hidden disability” in that we don’t have canes or crutches or a guide dog.

It’s only when you get to know the three of us a little more closely that you realize we’re a bit… different. We’re all uncomfortable making eye contact and tend to look off to one side, or gaze into the distance, as we listen to someone speak. And for that matter, we probably wouldn’t be caught dead in a crowd at all since we all prefer to spend time alone. We’re conspicuous by our absence from office get-togethers, after-work drinks or lunchtime chatter.

We tend to start sentences with “Did you know…?” and are impatient with small talk, meaning they’re uninterested in, or left out of, the informal networking that goes on in the workplace; we’d rather talk about facts, or socialize based on a shared interest or activity. Sometimes we are mistaken for snobs, know-it-alls or showoffs.

All three of us are pretty bright; like many others with AS, I belong to Mensa, whose unofficial motto is “If you’re in Mensa and you don’t have AS, then someone else wrote your test for you.”

Someone once said that talking to someone with Asperger’s is a bit like shooting the breeze with Dr Spencer Reid from Criminal Minds; our brains are like search engines. Need to know about the breeding habits of wrasses, or whether a number is prime? Just ask Chris, or me, or John. (Another friend of mine works with disadvantaged kids, one of whom has Asperger’s. At their office, people say fondly, “Forget Google – just ask Ryan.”)

And all three of us have other quirks that often come with Asperger’s. Some are a plus:  like Daniel Tammet, for example, I have synesthesia, meaning I see music, numbers, letters and days of the week in colour. John is gifted in music, and Chris is a language aficionado.

Some are not a plus, and this is where Asperger’s can really knock the stuffing out of those who have it: fear, frustration and anxiety are a constant in both Asperger’s and autism, meaning a person’s “stress-meter” is constantly over in the red.

Hypersensitivity to sounds, lights and textures are a given. I once wrote in my diary, “imagine being in a small room with a shrieking smoke alarm, a blaring radio, flashing lights, a screaming baby, marbles clattering off the walls, two movies running, fiberglass down your shirt and cold water spraying in your face. Now try ordering your dinner or explaining that flow chart – or chilling out. Welcome to Asperger World.”

And because people with AS tend to have trouble reading body language, facial expressions and subtle social cues, communication can be a minefield. Folks with Asperger’s are often underemployed because they have trouble with the social and interpersonal aspects of a job — we’re the super-brains working in the mailroom, or sorting files. Quite often we have difficulty making or keeping friends, or maintaining a romantic relationship.

But Chris, John and I agree that our AS has gotten better as we’ve gotten older. The hypersensitivities that made us scream or “stim” as children are less “loud” now. Peer pressure and life experience help fade some of the socially unacceptable behaviours – for example, I walked with a strange gait till a friend in grade eight showed me how to place my feet correctly. Anxiety revs up to a roar in puberty (as it does in all adolescents) and then tends to ratchet down again in young adulthood.

Where challenges persist, science and research have stepped up to the plate: anti-anxiety drugs and behaviour therapy, and the understanding of Asperger’s itself, havecome a long way since John, Allison and Chris were kids.  Many workplaces have “quiet rooms”; some companies make less-irritating clothing for people with sensory difficulties; and increased public understanding of autism means that people like me are treated less and less like freaks or outcasts and given opportunities to put our considerable talents to use.

Regardless, Asperger’s will always be a hard diagnosis to hear, and I would be doing all of us – and you –  a grave disservice indeed if I said life with Asperger’s or autism was anything but an ongoing challenge. If your child has just been diagnosed, or if YOU have just been diagnosed, you have a long road ahead of you.

But thanks to “autism celebrities” like Temple Grandin, Daniel Tammet and John Elder Robison; to the thousands of researchers working to understand autism; to John, Chris and others who share our stories and don’t let Asperger’s hold us back; and, perhaps most importantly, to people like you who are simply reading this article, there are more and brighter lights and signposts along the way—for all of us Aspergians who walk among you.

Additional links & resources:

What is Asperger syndrome? (Asperger Society of Ontario)

Doctors are failing to spot Asperger’s in girls (Guardian, UK)

More than just quirky: girls and Asperger’s (Newsweek)

Daniel Tammet’s website

Temple Grandin’s website

John Elder Robison’s website

Online Asperger’s test

National Autistic Society (UK) TV ads about autism:

Morning Commute

Misunderstanding

Crash

Socially awkward

“Autistic aloneness”

My horoscope for July 10 says “Your no-nonsense approach will cut through all the emotional garbage that others are trying to lay on you. You don’t care about feelings, you care about facts; and if the facts say “so long” you’ll happily cut the ties that bind.”

Some people would say that describes me to a T (whatever that means…what is this T thing? A T-square?) and to a certain point that is true. I don’t like drama (which is what people typically call big displays of emotion or neediness), and I am very uncomfortable when people become needy with me and seem to want me to be their Mom or their wise big sister or whatever. I think people mistake my aloofness for wisdom sometimes, or my sense of humour and affable “office face” for “warm fuzzy person,”  usually with disastrous results.

People also ask me why I don’t date. I am what the autistic community calls “high-functioning,” meaning that I have crafted a pretty decent “exterior” for myself, my “persona” if you will. So, besides being able to function reasonably well at my job, to many people I also look like a good catch romantically. I’m funny, I can be friendly, I don’t look like a troll (much) and I’m smart.

The truth is, though, that although I make a good first impression, I can’t actually sustain the illusion much longer than that. The conundrum, of course, is that I do tend to crave more than an arm’s-length superficial relationship with other humans (to know/understand someone else, and to be known/understood), but I can’t do it. For me at least, I think that’s the crux of the “autistic aloneness” that researcher Leo Kanner described when he first coined the term “autism” back in the 1940s.

Aspergians are prey animals.

Temple Grandin describes this push-pull/approach-avoid feeling very well in her autobiography, Emergence: Labelled Autistic. As a child she craved human touch, but simply could not stand the “engulfing” feeling that body contact produced. As a small kid she would get under the sofa cushions & have family members sit on them, and the squishing feeling gave her a feeling of calm and connectedness. Later she built her famous “squeeze machine,” modelled after a cattle chute on her aunt’s ranch, and she still uses a modern version of that today to calm herself.

(I have never tried this because I don’t think I’d like that much weight on me, or the feeling of being confined. Like most people on the autism spectrum — and like the prey animals Grandin compares us to — I loathe “light” or sudden touch and am more comfortable with a heavier touch, if anything at all, but I think the squeeze machine would bother me. I calm myself with exercise, routine, or by being around animals and nature.)

Like many autistic people, Temple Grandin has decided to be celibate, an arrangement that works for her. Other people with autism and Asperger’s manage to date and have relationships. John and Chris, whom my friend “Dr. Smiter” wrote about in another article on this site, both date. Daniel Tammet is in a relationship and John Elder Robison is married with a son.

I have tried dating, and been in some relationships. But they always end, and they usually end the same way – misunderstandings, fights, cold silences or screaming matches, bad feelings and resentment all round.

Fully functional.

Someone asked me not that long ago (really, the things people ask) whether the problem was sex, whether I can “do” sex. Well, in the words of  Lieutenant Commander Data from Star Trek: The Next Generation, “I have been programmed with multiple techniques and am fully functional.” So, no, that is not the problem.

(And obviously if I knew what “the problem” was, I’d be a very rich person, and probably would not have Asperger’s. )

I guess it comes back to that push-pull/approach-avoid. When I experience an “attraction” to someone, whether it’s a crush or simply a desire to be friends, it is usually on the basis of some sort of shared interest. I won’t say that I’m indifferent to looks or how a person carries themselves — I can appreciate a nicely sculpted body as much as the next person, and people who don’t know how to behave in public make me cringe. But mostly I like the idea of having someone to do things with: hiking, biking, collecting things, playing board games, watching TV or movies, interacting with animals.

And, somewhat surprisingly, I actually like having another person to sleep with at night. Probably the same way that wolves & puppies like to “den up” and cuddle next to each other. Maybe the darkness makes others less threatening. Who knows.

Unfortunately, in my experience, these things always blow up in my face once the dynamics turn to serious romance: once things move to a “deeper” level, with a lot of give-and-take expected, then misunderstandings and thwarted expectations rear their ugly little heads, and pretty soon the whole thing is wrecked.

I HATE this game.

To me it feels like the person has asked me to play Monopoly: I love board games, but Monopoly is a game I happen to hate — it makes me nervous and irritable, and I end up angrily walking away from the table. It’s almost like things are better as an anticipation for me, a romantic dream or a what-if, rather than trying to negotiate my way through the (for me) pointless minefield of human interaction. I just can’t do it.

Sometimes I wonder if people see me as the Snow Queen or something. I seem to intrigue others (and a couple of people have confirmed this), but I don’t — can’t — let them in over the “drawbridge,” beyond a certain point, that point being simple friendship. I don’t do this on purpose, obviously, or with the intention of hurting people; I am not a mean person, although some thwarted suitors and friends certainly have described me as a bitch, unfortunately.

I think it stems more from the “prey animal”-esque need to protect myself — Temple Grandin argues that all people with autism are prey animals, programmed to flee, because of the way our brains are wired, and I tend to agree. I used to get this feeling when I was in high school and someone would invite me to a dance: I would want to go, want to be part of the fun, but I can’t dance and crowds and noise frightened me, so I would make an excuse and not go, and then feel lonely and kind of stupid all night.

From what I understand, people without Asperger’s and autism also feel these sorts of things. A lot of people nod their heads when I talk about such things and I think partly this is because they can relate to (empathize with) similar experiences in their own lives.

But for me this is almost the definition of Asperger’s: I am a prey animal at heart, and more than anything, I need to keep other humans at arm’s length, where I can see what they’re up to.

That’s all for now.