When I Say I’m on the Autism Spectrum, and You Say, ‘But You Seem Fine!’

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“Coming out” as a person on the autism spectrum can be difficult. It is not only a deeply personal issue, the aether is also ripe with stigma and honest misunderstandings. In that context, some of you may have accidentally said some words to a person on the spectrum that hurt them very much, and you might not know it. Simple words, probably meant in kindness, but perhaps, when explained a bit deeper, you’ll see why they’re not helpful.

I was diagnosed with Asperger’s three years ago. By then, a long lived, sneaky suspicion had grown less sneaky as my knowledge about the syndrome and my own mental patterns had increased. Still, my psychiatrist was a lot more confident than me. “It looks like you have Asperger’s syndrome,” he said, “No, strike that. You most definitely have Asperger’s.” In retrospect, I think he had wanted to avoid the confusion I always feel when people use uncertain terms and rely on body language and context.

I felt conflicting emotions. All that energy I had to spend interacting with people made sense. All the tantrums, foot stomping, door slamming, and anxiety attacks, that occurred whenever my mental energy-meter reached zero, were suddenly a bit less shameful to me. My personal ineptitude in monitoring and controlling my emotions had a named cause.

On the other hand, the endless energy spent improving my ability to read faces and social contexts seemed completely wasted. All those hours putting on my social face and returning home, devastated, moody and easily triggered; that could have been minimized and managed much better. My partners over the years had not needed so often to take the brunt of all my frustration, just because I wanted everyone else not to notice how I was struggling to keep it together.

I had spent so much time and tried so hard, that I felt I deserved to be recognized for my progress. I had even entertained a small hope that my psychiatrist would say “It’s not ASD and it can probably be easily fixed with therapy and practice.” But I had been utterly incapable of fooling him and playing the part I so badly wanted to play. He bluntly explained: “Even if you work hard, it will probably get worse as you age, although you might find it easier to accept.” I cried quite hard when I left his office, because deep down I knew he was right. I’d already felt it. My ability to function in a social setting had decreased in proportion with my surplus energy. I simply had more of that when I was younger. Ten years ago, I could prepare mentally for a social event with a few days notice; even occasionally do something relatively spontaneous. Those days are gone. I have to build up momentum for a week to reach that peak, where I can be face to face with someone not my wife for more than a few hours.

The amount of time I can be without my routines before I get anxious is decreasing. It’s a problem, because I have a desire to be social. I want to keep my friends. I need the practice. But staying “in character” has grown steadily harder, while staying indoors, away from social interaction, is increasingly alluring. That consistent trajectory makes me feel like an enormous failure.

You might say I should just be myself when interacting with people, but I still feel the need to perform. First of all, because I don’t want to stand out as much as I otherwise would. Secondly, because people don’t see the struggle going on underneath. Even for the ones I’ve personally told, it can be difficult to truly relate — and that can mean judgement. In that context exists a small sentence, and it contains some of the hardest words for me to hear. While I’m sure every single person that has ever said it to me meant well, I wish to try making them aware of how it translates. The words are:

“You seem fine!”

They dress in different colors: “Come on, you are a very social person.” “It’s normal. Everybody gets enough of people.” “That’s just like me, I don’t like talking on the phone either.”

Every variety entails the same thing to me:

“I don’t see your condition. Your struggle is not real to me.”

No, you don’t see my condition. I’m working and fighting constantly for you not to see my condition. I lie awake at night, rehearsing conversations in my head. I practice facial expressions and body language in the mirror. I’m constantly making an effort to subdue my ticks, vocal amplitude and any physical outbursts triggered by anxiety, frustration or elatedness. Every day I’m scrambling together whatever little energy I can to have some to expend when I’m with you. That relaxed and loose phone call we just had: It was predated by an hour spent as a nerve-wreck, preparing talking points and tone of voice. None of it is because I don’t like you. Quite the contrary. It’s because I do not have the mental skill sets that allow most people to do this sort of stuff intuitively. I can’t jam, I need my mental note sheets, and if someone flips the order of the papers or changes the tune, I have to engage almost all of my mental energy to keep up. I have to actively process not only your words, but also your facial expressions, while at the same time try to coerce my own facial muscles and voice to express that which I have calculated they ought to convey. It’s very hard work.

Therefore, when I tell you about my condition, what I don’t need is for you to brush it off because you haven’t really noticed, or you think it’s similar to having off days or disliking phone calls. It might seem like a compliment; something I’d even wish my psychiatrist had said. But I’m struggling underneath, and I’m doing it for you. By dismissing me as “normal,” you are ironically adding to the pressure, because I feel like I’m not being understood and my hard work is being ignored. I fear that any social transgressions will therefore be filed under “weirdo” in that black book I believe most people instinctively keep. It makes me feel resigned to sit alone in the dark, frantically pulling on the thousands of ropes that make the Aspie man-puppet nod and wink at the appropriate time.

If you happen to find yourself with a person with ASD, thinking something along the lines of “That’s silly, he/she seems perfectly normal!” please consider this. Respect them enough to try and digest and understand it, as you can be sure they are constantly making a hard effort to understand you. Most likely they are spending a large amount of precious energy they need to function for the rest of the day, just to sit there with you.

So, please don’t brush it off. Try to acknowledge it, and, if it feels right to you, tell them in plain words that they don’t have to spend all their energy suppressing themselves or controlling the situation; that, for example, avoiding eye-contact is absolutely no biggie. And when I say plain words, I mean plain words. Remember that we might not be able to detect your acceptance from your body language. Of course, this only works if awkward silence and pauses, random behavior or ticks truly doesn’t bother you. But at a bare minimum, acknowledge their condition so they might feel a bit safer when it comes to accidental social transgressions.

I get that it can be hard to understand if you have a natural ability to read and understand people and social context. It might not be something you have to think actively about, like you do with algebra or German grammar (German natives excused from this analogy). But many of us do. Knowing that we have an understanding participant on the other side of the table is crucial to our progress as social individuals. It creates a breathing room that allows for experimentation instead of the repetition of learned social rules we are used to. Any room you can give us is greatly appreciated.

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I'm Using My ASD 'Traits' for Personal Development

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Now after a year, a house move and a job relocation, I can focus on the now. I have Asperger’s syndrome. The “traits” that have empowered me I can now recognize and use. The positives of being on the spectrum are a subject that often appears to be avoided in the media. My loyalty, attention to detail, laser-beam focus and intelligence are tools that when stimulated, make for a positive mental attitude. Instead waiting for life to bring something, I am taking accountability for myself.

To make relationships work, interact with people and achieve goals, I have made serious changes to my perception of the world because allowing cynicism and pessimism and trying to control life as well as being controlled by life has not achieved anything. This came to me as a result of thinking logically, another “trait” of my Asperger’s.

Personal development has been an interest of mine for some years. I wish the education system would teach it in schools, as it would have been so much help to my childhood mental wellbeing. I hope to see it being taught as a key skill in the near future because I believe that regardless of your background everyone has the potential to change.

Note: I must stress that I am not trying to “cure” myself. (ASD does not have a cure. It is not a disease.) or ignore my neurodiversity. I have had a confusing and anxiety-prone life that cannot be changed, and I have learned the hard way that you can’t change the past, but you can create the future.

Yes, I stim.

Yes, I have sensory issues.

Yes, I struggle to keep my mouth shut. (I used to be the opposite.)

Yes, old chatterbox (anxiety) is in the background saying, “You can’t do this and that.”

Yes, I do like structure.

Yes, I do have empathy.

Yes, I can move out my comfort zone

No, I will not let my diagnosis be my excuse not to achieve.

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Learning and Growing as an Autistic Woman

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I was first diagnosed with autism (more specifically, Asperger’s syndrome) back in 2000 at 9 and a half years old. I didn’t flap or stim or rock, and I actually had a hard time shutting up when I was given the opportunity to talk. However, I somehow knew that I was different from the other kids. It seemed to me like no one loved books as much as I did, and I didn’t know anyone else who could memorize things the way I did or “overreacted” to things quite like I did. No one followed the rules as strictly as I did. It seemed like no one else felt they walked around in a bubble, the way I did.

When I was first diagnosed, my parents and I were told all the things I wouldn’t do: get married and have a family, go on a date, drive my own car, get a job, move out of my parents’ house, or even graduate high school, let alone college. The next few years were more than a little nightmarish, between the bullying from other students, the new rules I had to follow, the constant social coaching and therapy from my teachers and my parents, and the “wonderful” changes accompanied with puberty.

It wasn’t until I got to 10th grade that I finally felt comfortable in my own skin. By then, I’d maintained an As-and-Bs report card in school and was ready to start Driver’s Ed. I wasn’t by any means the best driver in the world, but I didn’t (and still haven’t) hit anyone or anything. I didn’t end up getting my driver’s license until I was 19, but that was simply because of governmental bureaucrats holding on to my birth certificate rather than my lack of skills. Not long after I got my license, I finally saved up enough money from my first job (at a dinosaur museum, of all places) to drive my own car back home, completely debt-free.

Then I started going to college, having graduated from high school with High Honors. Most kids my age might have gone to the nearest university, but those massive campuses awakened a fear in me of becoming a tiny drop in a sea of faces. After being a teacher’s pet for so long, I dreaded losing that, so I chose to go to a technical school that had campuses near my house. I ended up graduating Summa Cum Laude in 2013, having been on the Dean’s List for my entire college career.

Today, I’ve done everything I was told I wouldn’t do except move out and start a family with my husband. There are days where I wonder if I’ll ever do those remaining things — days where I feel all sorts of lonely, undesirable and useless — but I force myself to remember what I do have. I have a loving family who knows my struggles and defends me from the unfortunate consequences of them. I have a group of friends who have similar struggles and let me know that it’s OK to be different. I have a religion that helps me see that I am so much more than a diagnosis and inspires me to strive for more than some others would think I should have.

Above all, I have this amazing mind that is able to see things that most people might not see, hear meanings that other people might have ignored or forgotten, taste the simple elegance of the blandest foods, feel the most luxurious patterns in the world around me, and smell the most beautiful of roses in the humblest dandelion. I’m able to use this mind I have to help others learn and live, and I teach others by example how to be loving and genuine and protective of their fellow man.

There are people who would say that I have this terrible condition and how they would avoid the most ridiculous of things (hot dogs? vaccines? gluten?) to make certain that their child doesn’t have to “suffer” as I have. I ask them, is being autistic really so awful? I’ll be the first to admit that it is not always easy for me, but to see-hear-taste-feel-smell-know the way I do is the most wonderful thing! It’s almost as if locking certain parts of my brain away has awakened the rest of my brain to what I feel is truly important in this world. The complicated maze of politics and social constructs just fade away under the simplicity I can see in the world.

I’m working with the tools I’ve been given to reach my full potential. People may try to say that I shouldn’t reach so far or that I’m wasting my time, but I want to continue to grow and learn and better myself. I already know where I’ve been and I don’t want to go back there, so I’m going to keep moving forward hand-in-hand with my autism.

To anyone who may be struggling with their autism, let me tell you — you may be on a different schedule as compared to some other people your age, but as long as you reach your goals in the time that’s best for you, the timeline doesn’t matter. Be yourself in the time and way that makes the most sense to you, and know that you are amazing human beings with more potential than even you can dream of.

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Asperger's and Intimacy Through Chess

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Communication is hard. It is hard especially if you were not pre-wired to recognize facial expressions, body language and other subtle nonverbal cues “normal” people think I can notice in conversations.

I have always found myself trying to decipher human emotions like one would an ancient tablet written in a dead language. As a result, most of my conversations with others have been activities of immense intellectual effort that were too draining, too confusing and convoluted with frustration on both ends.

Growing up with Asperger’s syndrome, a condition that impairs my ability to communicate with others, has been difficult socially. This glaring deficit had become so descriptive of myself I had come to a point where I decided being ridiculed for my disinterest in social understanding was my least favorite hobby.

That is, until I discovered chess when I was 10.

A philosophical interpretation of chess has mostly been that it’s a game of domination. There is some truth in that interpretation, and I’m sure it’s true for a lot, if not most, chess players.

Chess, for me, is less a game of tactics and strategies, and more about observing a person’s style of approaching problems that are not always apparent in your everyday mundane socializing. It opened up an alternative route to human understanding, through which I could psychoanalyze someone without having to have a conversation.

Are they fast players who are quick in thinking but are reckless and impulsive, or are they slower in thinking but cautious and precise in their moves? Are they the type of person who starts the game already with an endgame strategy, or do they test the waters first and analyze the other person before coming up with a plan? Are they the type who are liberal in self-sacrificing important pieces for a win, or do they fall apart and give up after having lost their queen and knights? If had the upper hand in a game, are they the type to go for a merciful and compassionate quick checkmate, or will they toy around to see how far they can push your buttons until you give up?

I could never grasp these personality traits if we were to have a conversation. I’d be too flustered, too caught up in processing the social interaction and coming up with a contribution of my own to ever genuinely connect with them on a deeper level.

I’d find a more profound level of intimacy with you if we played a game of chess than if we were to have a verbal conversation. There’s something personal about exploring another person’s mind and discovering what prodding make someone tick and what stimulation that brings them joy. It’s strangely intimate.

I am not, by any means, a brilliant chess player. I can hardly amuse an opponent of intermediate level. But I discovered that truly understanding another person’s dispositions and thought processes were possible for me through chess, at a young age when I found myself the most confused about my inability to make a connection with anyone while everyone else could do it with ease.

Verbal communication is exhausting hence ineffective for a lot of us because there are numerous factors that need conscious effort for processing, such as analyzing facial expressions and reading between the line. I hope to impress on you the controversial (and debunked) issue that autistic people are incapable of human connections and empathy simply because we do not express love and connect with people in traditional ways.

Our methods are different, not defective.

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My Life as a Woman on the Autism Spectrum

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I am not a man. I do not have an interest in train schedules or fruit flies (like my high school biology teacher). I am not a savant. I have a sense of humor, and most of the time I will get your jokes.

I can make eye contact, but it feels completely unnatural and often times way too intense. I can be a social chameleon, taking on the persona I think might fit best — mimicking others who seem to effortlessly float in and out of conversation. I successfully talk to people all day long and it looks “normal” because I have mastered the art of looking “normal.” But it’s not. It’s exhausting.

Words sometimes come so fast, it feels like bullets whizzing by my head. I don’t have enough time to process them because there are more on the way. Or perhaps I understand the words, but can’t determine the intention, and therefore how to respond. Am I supposed to be annoyed for you, happy, curious, concerned?

I can’t filter out noises and other conversations close by, so everything gets jumbled into a big auditory mess in my head. I don’t even hear you talking anymore. Even conversations I enjoy take some work.

I study people who I really want to know and engage with. I catalog their facial expressions and their tone of voice over time so I know what they mean.

I have a difficult time seeing things from someone else’s point of view. I feel everything in my body — often as physical sensations first — and I can’t explain it in words. I have a limited emotional language.

I have strict routines and absolutely hate disruptions or changes.

My body requires almost constant motion of some kind. If I have to sit, I am moving my fingers or tapping my teeth. I am physically addicted to repetitive, continuous, aerobic exercise, where I can determine what will happen next and my breathing is rhythmic.

Sometimes at the end of the day I am mute, overwhelmed and exhausted. The anxiety and tension wears me down. I am always trying to reserve energy so I can be a wife and a mom.

I am a woman with Asperger’s. I always knew I was different and struggled to connect with people, but couldn’t explain it. I have been misdiagnosed, improperly medicated, and misunderstood (even by myself). I didn’t believe it at first because I didn’t fit the stereotype, but then I researched women on the spectrum. To my astonishment, I read story after story of women who sounded just like me. I do not want attention or encouragement. This is real, and I want to create more awareness.

I want people to see another picture of what Asperger’s can look like. I feel as if I spent my entire life trying to fit into a social system that doesn’t work well for me. Now, for the first time, things are starting to make sense.

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How Hockey Helped Me Be Me as a Person With Asperger's

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Hi, my name is Richard Coffey and I’m a Leafaholic. What I mean by that is I live and breathe the Toronto Maple Leafs, therefore I live and breathe hockey. My friends call me a sports encyclopedia because I can tell you any hockey, baseball and basketball stat/fact you ask. So I want to take a couple of minutes to tell you why I got so invested in the Leafs and what I’ve learned from making sports knowledge my life.

You see, I have Asperger’s syndrome. What that means for me is I often struggle with social interactions or in understanding things like body language, sarcasm or subtle things most other people do. So, growing up I struggled when it came to making friends because I didn’t understand how to start and have conversations, or how to play with others or anything like that.

All that changed one day about eight or nine years ago. I was watching TV with my older brothers and my dad when “Sports Center” came on. I had seen the occasional hockey game but I hadn’t gotten into sports that much. But that day, I watched the anchors of “Sports Center” set up a clash between the Canadians and Leafs excitedly, making this seem like the key game of the regular season (it was mid-January). I was instantly hooked.

When I went to school that week, I started listening to people’s conversations whenever they talked about sports. I would hear things like, “Are you gonna watch that (fill in random regular season game)? It’s gonna be epic!” And there it was, my ticket to making friends. I learned I could walk up to someone who liked hockey and say, “Hey are the Leafs gonna make the playoffs?” and bam! I had a conversation starter. This proved to work wonders for me as I started my dive into understanding sports, I started to pick up new friends because they were impressed by the knowledge I had.

I’ve managed to make hockey become my entire life. I can’t play for the life of me, but I spend a lot of time studying plays and working to understand hockey. Couple that with my new job as a play-by-play man on “Rogerstv Toronto” and I’ve made hockey and the Maple Leafs my whole world (I’m wearing a Maple Leafs sweatshirt whilst writing this).

Why would I choose the Leafs as my team? Why not the Hawks or the Pens (Crosby had just started)? I’ve thought about this, and I think it really starts to make sense now, but for the longest time the Leafs were a team that struggled with the right way to do things. For years, it has been a bad trade after a bad signing after a missed opportunity. The point is, the Leafs are sort of like me, struggling to figure out the right way to get by in the world and by chance they found that lucky break that helped them find their path. For the Leafs it was Auston Matthews, and for me, well, the Leafs! I like to think I found the team I related to the most, and that’s why I stuck with them through the last nine to 10 years.

What the Toronto Maple Leafs did for me, what Leafs Nation did for me, is something incredible. In this community, I found my place. I was no longer the guy who was different. I wasn’t the little kid in love with the weather network or the kid who randomly cried whenever he got slightly upset (I don’t do that anymore). I was the voice of understanding, I was the one who was respected because I knew what I was talking about. The Toronto Maple Leafs gave me a self-worth I never knew I possessed.

Find your passion, find whatever inspires you to look further than the surface. Find what excites you and invigorates you to try and do something greater. Because when you find that passion, you find that purpose, and you find communities you connect with. These communities can help you, listen to you, help nurture your passion whether it be hockey or something else. Then it won’t matter whether you’re different or whether you see yourself as different because you will have others who help you and support you in whatever you believe in. Find what you’re passionate about and don’t be afraid to follow that passion. I wasn’t afraid to follow my passion for the Leafs, and it truly changed my life for the better.

If you would like to watch my TEDx Talk I did in October 2016 about my experience with Asperger’s you can check that out here.

A version of this originally post appeared on the Centre of Leafs Nation blog.

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