(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)
National Autistic Society (UK) TV ads about autism: