Last year, around this time, I wrote a post about what I wanted to work on in 2011. A year later, I have written almost nothing at all in this blog. In part, this is because I’ve been pretty busy — circumstances have led me to move out of my home country to Silicon Valley to work for one of the excellent tech companies based there. But also, in other places and sometimes using my real identity, I have been engaging in small acts of autism advocacy. Over the course of 2011, my perspective on myself, Autism, and the relationship of those two has changed.

To review, I wrote that in 2011, I wanted to stand for myself. That’s what I said, but that’s not what I really meant. It took me almost the whole year to come to this conclusion but what I was really after is contained right in this little paragraph near the end (the most salient part in bold):

In 2010, I worked on building my self-esteem. I’ve made some great progress but before I can say I truly believe in myself, I must be willing to be myself everywhere and to everyone, always.

I didn’t so much want to stand for myself as be myself. I recognized it long after I wrote that post, when I had the opportunity to attend a talk given by Mike Robbins, the author of “Be Yourself, Everyone Else is Already Taken.” I did end up buying and reading the book after the talk but it wasn’t nearly as useful as the realization that holding me back from being myself was my belief that I am fundamentally flawed. In other words, if I were truly myself, I wouldn’t be liked or accepted. It’s a poisonous belief, reinforced by years of adjusting my behaviors and mannerisms in response to the cruel teasing and bullying of my peers. The ultimate goal of this process was to no longer be Autistic.

At one time, I was actually convinced that I’d really done it, that I’d become so “normal” that Autism was no longer a factor in my life. Only on very rare occasions did I hear anything other than “wow, I wouldn’t have known you were Autistic if you didn’t tell me” when disclosing my diagnosis. But then, I still continued to have trouble with friendships, dating, and co-workers that snapped me back to reality: I can change all of my behaviors and mannerisms and study all kinds of social skills. In the end, I’m still Autistic, just armed with much more social experience and honed methods for coping with my difficulties.

I felt completely defeated. My goal was unattainable and thus I would never be accepted and loved in the way that I so strongly desired. From that point on, I was perpetually depressed. But I did cut through the haze of my depression just long enough to decide that if I couldn’t be normal, I might at least get along well with other Autistics. The people I met at that time led me to a broader Autism community on the web and materials on Autism advocacy. That was the beginning of a total paradigm shift in how I think about myself.

Many months after that, I found myself working for a new company in a new country, and I was up for performance review. As part of this review, I was asked for a self-assessment, a short document detailing what I had done, what I feel my strengths are, and what areas I feel I can work on. I am an expert in telling myself that I’m doing it wrong but I had to write about my strengths too. Certainly, I didn’t want to suggest to my new employer that they’d hired somebody who has none. And then it hit me: a limiting factor of my performance at work was that I hadn’t thought about my strengths and therefore I wasn’t playing to them. I spent some more time reflecting on what I do well and wrote what I felt was a very candid and complete picture of myself at work.

Then — and this is the beauty of having a brain that thinks in patterns and associations — I connected all of the thought I’d put into that self-assessment with material I’d read on neurodiversity, a movement to recognize and respect differences in our neurology that apparently started from Autism advocacy. When I fully replaced the word “normal” with “neurotypical” in the framework of my thoughts and spent a lot of time reflecting on my strengths, it clicked: I wasn’t defective, just different. Neurotypicals have a way of communicating with each other that their brains are suited to but my brain doesn’t work that way, so I have to adapt by leveraging the benefits of my unique neurology. I couldn’t see this because I’d fallen into the trap of always seeing myself in terms of what I can’t do and never what I can do. I can’t read facial expressions well, I can’t express my feelings well. I can’t, I can’t, I can’t.

I started to think more and more about things I can do, strengths that I have, and slowly pulled myself out of the trap of thinking about myself in terms of “can’t’s.” If I could never be neurotypical, I’d rather admit my differences than allow people to misinterpret them poorly by using the same standards they use for neurotypicals. For example, holding eye contact is still somewhat difficult for me and although I make my best attempts, when I’m tired I will keep my eyes mostly away from the other person’s. That will be taken to mean “he’s ignoring me” or “he’s not fully engaged here.” There’s no third option of “he has trouble holding eye contact because it unsettles him but you still have his full attention.” Neurotypicals don’t do that; Autistics do. From there, patterns about my friendships emerged: I get along much better with people who prefer to be direct and thus intentionally place more weight on verbal and other explicit/obvious cues. That makes sense, since Autistics are ill-equipped to communicate otherwise.

In 2012, I’ve completed the transition to being a self-advocate and, in small parts, an Autism advocate. So, 2011 was the year that I learned how to appreciate myself but 2012 will be the year that I stand for myself and in doing so reach my true goal: being an authentic person that others can connect to and like. And what about my strong desire to be accepted and loved? The person I really wanted to accept and love me was myself, and at the time he was on a mission to completely discard everything that makes me me. Mission aborted, I can pick up the pieces and love myself in a way I couldn’t possibly before.

The fate of this blog is uncertain. Its title somewhat reflects my old, misguided attempts at becoming neurotypical and as I do more Autism advocacy under my real identity, the anonymity of this blog becomes less and less important. It may disappear as I reorganize the rest of my online presence.

If there’s one thing to take away from my story, it’s this: there’s nothing wrong with us being different.

Dr. Andrew Wakefield published a paper in 1998 that supposedly showed a connection between the MMR (measles, mumps, and rubella) vaccine and autism. The sample size was ridiculously small for a scientific study: 12 patients and no control group at all. Not only that, but the causation it was reported to show is a weak correlation at best and an outright lie at worst. The conclusions it drew about the connection to autism were as far as I understand it largely based on parents claiming to observe autistic behaviours in their children just after the vaccination — never mind the possibility that those might’ve existed prior to vaccination and not been observed until afterward! In 2009, the study was retracted from the journal it was published in and dismissed as bad science.

It turns out that it wasn’t just bad science. It was actually a deliberate fraud. It has come to light that Wakefield was being paid hundreds of thousands of pounds to conduct this study, which was to become fuel in a law suit against pharmaceutical companies. If these allegations are true, then the absolutely unthinkable has happened: I have found a reason to hate him and his study even more than I already do.

Even after the 2009 dismissal of the research and this recent allegation of fraud, there are still those out there who hold strongly to the belief that vaccines cause autism and that therefore parents should not have their children vaccinated. This might seem like a relatively innocent idea but think about it for a moment and you’ll see that there’s a rather nasty implication here.

These parents consider the possibility of their child becoming autistic to be worse than the possibility that they might die from a preventable childhood disease.

Finding out his or her child is autistic can be a rather brutal blow to a parent. The barriers that Autism puts up to communication between parent and child can seem impossible to surpass. At the “low functioning” (for want of better terms) end of the spectrum, it can seem like autistics are condemned to a life of institutionalization, forever a burden to their caretakers and loved ones. But I have never heard of Autism killing anyone. Those childhood diseases? They absolutely kill people. That’s precisely the reason why we vaccinate children against them.

So when you say you won’t vaccinate your child because you’re afraid that he or she might become autistic as a result, what I hear is that you think Autism is a fate worse than death. Would you really rather that your child die of a preventable disease than carry the burden of supporting your child through their struggle with Autism? What kind of parental love is that?

I think it is largely to my mother’s credit that I have turned out the way I have. She didn’t give up on me just because it was difficult for her. She fought tooth and nail so that I would receive the care and support I needed and I wasn’t even her only child! And yes, she had me vaccinated. To me, that’s parental love. Being so worried about having to bear the burden of supporting a child with autism that you’d rather risk your child dying of measles? That’s just incredibly selfish.

So if you’re still clinging to the notion that vaccines cause Autism and that this is a good reason not to have your child protected against preventable but potentially fatal diseases, get a grip.

Autism is most certainly not a fate worse than death.

A new year means New Year’s resolutions. It means looking back on what you did previously and thinking about how you’ll do it better this time around. Years are the main unit of measure of our lifespans. Each one that passes is a milestone that we celebrate and a point for reflection on the past.

I’ve thought of many things that I want to do this year but there is one that I think is the most important:

This year, I want to stand for myself.

I’ve recollected the various interactions I’ve had with people in my day to day life, from complete strangers to acquaintances to good friends, and there’s one thing I’ve noticed: I’ve made my personality itself incredibly malleable. This isn’t entirely wrong. After all, if you know and believe that you’re in the wrong, it would be silly to continue that way just to be consistent. But I can’t always be wrong, can I?

I think that my desire to be accepted has sometimes led me to compromise my personality a bit too much. I bend to what I believe that others expect of me, even when I don’t entirely agree or like what I become in the process. Or more often (and worse!), I shy away from doing things because everything I do carries with it the risk of losing the acceptance of some person or another in my life. The problem with this is that by trying to be everything, I become nothing in particular. I become flat and boring, nothing special or particular to note.

In 2010, I worked on building my self-esteem. I’ve made some great progress but before I can say I truly believe in myself, I must be willing to be myself everywhere and to everyone, always. I’ve learned some things in the last year and this is one of them:

Being accepted is not the same as being liked.

So it’s about time that I stopped apologizing for being myself and start being truly genuine. I want to let people taste my true flavour and let them react as they will. I can’t be liked by everybody — I can’t even be accepted by everybody — but I want to seek those who will like me for being me and who I genuinely like for being them. I want to form deeper connections with people I care about and who care about me. I want to share what I am with others and let them share what they are with me.

I’m working on that this year.

My company has put out job postings for more web developers. I read them, passed them around; anything to help the company, right?

I’m living proof an autistic person can work at a company that desires “strong interpersonal skills” from their employees.

I just thought I’d throw that out there.

Up until now, I had never given much thought to the word “autism”. It was just the word for what I had, a disorder that affected me for better or for worse. But every word has to come from somewhere. Where did the word “autism” come from?

I recently read an article about Donald Triplett, autism’s “patient zero”, so to speak. That article tells the story about how Mary Triplett, Donald’s mother, had pulled some very valuable strings to get Dr. Kanner, the man who literally wrote the book on child psychiatry, to have a look at her son. He described Donald’s condition as “a condition which has not hitherto been described by psychiatric or any other literature.” So how did he describe what he observed in Donald’s behaviour?

He had, however, been working on a name for this new condition. Pulling together the distinctive symptoms exhibited by Donald and the eight other children—their lack of interest in people, their fascination with objects, their need for sameness, their keenness to be left alone—he wrote Mary: “If there is any name to be applied to the condition of Don and those other children, I have found it best to speak of it as ‘autistic disturbance of affective contact.’”

Kanner did not coin the term autistic. It was already in use in psychiatry, not as the name of a syndrome but as an observational term describing the way some patients with schizophrenia withdrew from contact with those around them. Like the word feverish, it described a symptom, not an illness. But now Kanner was using it to pinpoint and label a complex set of behaviors that together constituted a single, never-before-recognized diagnosis: autism. (As it happens, another Austrian, Hans Asperger, was working at the same time in Vienna with children who shared some similar characteristics, and independently applied the identical word—autistic to the behaviors he was seeing; his paper on the subject would come out a year after Kanner’s, but remained largely unknown until it was translated into English in the early 1990s.)

A term for an observed behaviour in schizophrenics became the term for an entire spectrum of disorders, all sharing common traits of difficulty communicating and forming interpersonal relationships. As a nice bonus, we even get a glimpse into the origin of Asperger’s Syndrome. So this word was not pulled from the ether; it was coined to describe precisely what Kanner saw in Donald and in the cases that he had discovered were similar to his.

(An upshot of this is that the influence of Donald’s mother was possibly a key factor in how this all played out. If she had asked Asperger for help instead of Kanner, the terms we use to describe “autism” might have been quite different.)

But that’s English. I happen to know a bit about one more language: Japanese. What is the word for “autism” in Japanese? Here it is:

ji-hei-shou: the Japanese word for "autism"

It is comprised of three ideographic characters, whose individual meanings combine together to form a compound word. The first character means self. The second means closed. The third means illness or disorder. So now we see how the Japanese describe “autism”: it is a disorder characterized by the person being closed or shut within herself. I have not read much literature in Japanese about autism but comparing the English and Japanese words makes me to wonder what the state of autism advocacy and/or awareness is in Japan compared to North America.

Perhaps this is the beginning of a journey to understand my condition from yet another angle.

I’m a geek of many different kinds. I’m also autistic.

My ability to sharpen my focus on one particular thing, sometimes to the point of obsession, and become very knowledgable about it or skilled in it is a trait I share with many on the autism spectrum and makes me fit right in with geeks, who are also often absorbed in their own interests. Being a geek and being autistic are very similar to each other and discussions of the social skills (or lack thereof) of geeks seem to inevitably lead to mentions of autism spectrum disorders.

Let me make one thing abundantly clear: I am a geek because I’m autistic, not the other way around. Being a geek fits well with my natural traits.

I become irritated when discussions about geeks with poor social skills lead to somebody making a remark about those geeks having some kind of autism spectrum disorder (usually Asperger’s Syndrome). Are we to presume that all people with autism have terrible social skills? Or that “normal” people would never make social mistakes and that those who do must have some form of autism? Social gaffes that I would never commit because I have long since learned better are being ascribed to me on the basis that I’m autistic. I’ve worked hard to attain the social graces and communication skills that I have and so have many others I know who are on the spectrum. I wish that the people who made these remarks would think of us.

Marissa puts it quite well in her post, “Don’t blame autism, dammit” (bold emphasis mine):

A kid I love is on the autism spectrum. He is 8. And you know what? He gets that you do not make remarks at school about other people’s bodies. He gets that, as hilarious as he finds bodily function humor at this time in his life, other people’s butts are off limits to him. You can explain to him that remarks about boobies are going to make girls uncomfortable and make it hard for them to learn at school, so he cannot do that stuff or it will make school a sad, unfriendly place for the girls in his class. Because he is not stupid, he’s autistic.

And he’s eight years old. The almost two decades between his age and mine is plenty of time to learn in great detail what is and isn’t appropriate in many social situations. While we may not pick it up as naturally as neurotypicals, we can and do learn. So the next time you’re about to make a remark about autism in a discussion of the poor social skills of geeks, think twice. We’re not all abysmally bad at socializing and there are more than enough neurotypicals with horrible social skills out there.

Welcome.

I called this blog “I’m Not What You Think” because I think that many who know me may be surprised to find out that I am Autistic. I don’t have Asperger’s Syndrome but the “classical” Autism. I was diagnosed when I was 5 and I had some of the typical problems that Autistic children have with learning language, including parroting phrases when I started to be able to speak without being able to parse and understand them. The usual reaction I get to revealing this fact is “huh, I wouldn’t have figured that out if you hadn’t told me.” So, to many people, I may seem like an ordinary, introverted geek, generally keeping to myself and fumbling through day-to-day social interactions. But it goes deeper than that; if we’ve ever met offline, I may not be what you think I am.

However you found me, I hope you’ll enjoy reading the things I’m about to write here. This is my outlet for the thoughts, observations, and rants that I don’t want to connect to my offline identity. Why? Because I am proud of the fact that in many ways I can pass for a neurotypical person, albeit sometimes a very odd one. People place the same expectations on me that they would on anybody else and do not assume me incapable of communicating effectively or understanding them. Minus my closest friends, my friends who are also on the Autism spectrum, and my family, I’d really rather keep it that way.

I just feel like I needed to add my voice to all of the voices out there, talking about their personal experiences with Autism, how their interactions with other people cause them to feel, what they think about the world around them. I hope that you’ll find these writings both insightful and entertaining.

A few things it might be useful to know about me, for context: I’m in my mid-twenties, have a bachelor’s degree, and a permanent full-time job in my chosen career that nets me more than enough money to get by on my own. I’ve got a little two-bedroom apartment in a city not too far from Toronto, occupied by me and my cat. I’ve fallen in (and out) of love a couple of times, to this point always with people who aren’t on the spectrum. I program computers, play video games, get together with friends for role-playing games, write for a couple of blogs, and torment my cat with constant cuddling — I think she likes it a lot more than her complaining suggests.

Sometimes life feels impossibly difficult. Sometimes I feel like I’m all alone. Sometimes I feel like I’m battling other people’s expectations when I don’t even know the rules of engagement. But sometimes I surprise myself by scoring a victory I didn’t expect. Sometimes I learn something incredibly valuable that enriches my life and improves my relationships with other people.

This is my world. Let me tell you about it.