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| My birthday party, aged 8 -- just for reference's sake. |
When I was a teenager, I cared deeply about clothes. I invested a lot of time in "my look": A sort of miniature professor, looking at it in retrospect. I am, by no means, a model -- or, for that matter, anything to look at. But I cared how I looked. I would find clothes that I felt represented my quirky, flamboyant self, in order to present a confident, put-together person. I liked to "dress up"; it prepared me to conquer the day that lay ahead -- fraught, as it was, with so many social situations I wasn't sure how to negotiate unless I acted more mature, like an adult. In high school, I was once confused for being one of the math teachers. That sort of thing.
At the time, I didn't know what I was doing. It was just something I did in order to feel less awkward in social situations that already made me feel so extremely out of place.
Then, the year after I graduated college, in 1995, as part of the psychological evaluations that accompany preparations for ordination, I was tested and evaluated to be autistic. ("Asperger's Syndrome" was the actual diagnosis. The APA has since determined that Asperger's is just one expression of Autism Spectrum Disorder.) The diagnosis was "new" for adults, according to the DSM. But I ticked so many of the boxes that my evaluator said I was either autistic or I'd suffered a major episode of brain damage as an infant (I insisted I hadn't -- turns out she was joking).
Several of the pieces fell into place with that evaluation. I began to understand why I'd felt so disconnected at school. My idiosyncracies that were often dismissed as misbehaviors by my parents came into a clearer light. My obsession over appearance came into a clearer light, too. But those idiosyncricies could be pronounced and have lasting effects.
For example, in grade school, when we were learning to add and subtract using the number line, one of my teachers asked me what 4-3 was. I answered immediately. Then I asked, "What is 3-4?" My teacher responded, "You can't do that." I knew she was wrong. I responded: "You have to. If the number line goes one way, it has to go the other." I didn't know number theory, but I knew what made sense. That was the beginning of some rather difficult times for me. The school determined I was "retarded" because of my testing scores (my spatial IQ was below the "normal" level, while my verbal IQ was higher than normal). I was put in a special class. I was in that class for over three years, some of the most significant years in grade-school education, turns out. What I learned in that time, was practically self-taught.
When I was young, my parents felt a lot of pressure to make me appear to be normal. They didn't want me to stand out anymore than I already did. And, trust me, I get it. When you're a parent, and your kid was going to run away or be obsessively truant, cause problems in classes, and be seen as overall disruptive and misunderstood, then at least you'd want them not to stand out in physical appearance. No one can fully hate a kid adorably dressed, right? So that's what they did. And it's how I learned to pay attention to my clothes. It's how I learned, by high school, to wear ties and sport jackets and dress "smart".
Being able to look like you belonged was important.
So I've worked hard, all my life, through therapy and learning little ways of adjusting and "passing", to look "normal".
That's why I'm really not surprised to learn that lots of people don't believe I'm autistic.
This is a conversation Kendra and I had this week. Several people we know -- folks who are very close to us -- have shared with her that they don't believe I'm autistic.
I get it.
I know when they find out that they're shook. It's a shock to learn that someone who appears so normal, so intelligent, has a major "defect" in the way their mind works.
Originally taken as a compliment, I thrived being told no one would ever be able to tell ... until an incident happens, and that same person is then thrown off and doesn't understand why I'd act a certain way -- an "autistic" way. My outer-appearance is then no longer my safety net when trying to "pass" as neurotypical. My autistic, anxious, and ADD tendencies tend to make people very upset at me, because they don't see it coming. Someone seemingly "normal" has just had some kind of episode and all credibility has gone to hell in their eyes.
This is, sad to say, the story of my life.
I don't hide my autism. I'm open with it. I tell others. I share the stories of what it's been like as an autistic man trying to make it in a world -- and in a profession like church ministry -- that put my autism on full display. I hope, in sharing, that people will be more understanding when something triggers my inability to pass that day. What that really does, though, is make people question whether I'm telling them the truth. They simply don't believe me. Then they act surprised when I do something so thoroughly autistic that they think I'm acting out or being plain weird.
There is a unique psychology behind how people with disabilities are perceived. There is often a stigma that disabilities are supposed to be visually identifiable. Society makes judgments about people's economic, social, and mental health status based on how they dress and present themselves. So when someone sees me having a hard time, there is often a mental disconnect. "Someone like him couldn't possibly be acting like that right now ... what is wrong with him?" Caring about my appearance has caused a loophole in my believability. I spend more time proving I am disabled than I do proving my capabilities (which is its own kind of battle).
When I tell you I have these conditions* and you say you don't believe me, that isn't a compliment. I don't need to hear your surprise. I don't need to be told that "no one would ever guess". Because yes, they wouldn't, and it sucks when they don't at the same time. Being misunderstood is shaming. I am shamed when I have a panic attack. I am shamed when I don't pay enough attention when expected to retain information by ear. I am shamed when I need repeated instructions, or need an extension on an assignment, or when the lights or sounds in the room are too bright and I need to leave. I cause deeper frustration for people because I don't "appear" to need help.
As much as I hate admitting it and asking for it, I sometimes need help. I need to be listened to when trying to explain the different ways I function. I need to be heard. I don't need you to necessarily "get it". I don't fully understand the way you work because I am not you. I can still acknowledge and accommodate your needs, but that doesn't mean I know what it is like all the time. I should be able to present however I want without being looked at weirdly because I am different mentally.
People with disabilities are not ugly. There isn't a "look" to my mental health. We need to be a society that stops judging with our eyes because we're paying more attention with our ears.
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* This is just as true for other psychological conditions, too. Kendra is Bipolar and folks have a tendancy of dismissing that diagnosis because they "just don't see it".