It was as if I were being sucked into another world. A curious calm stole over me, like I feel in deep meditation. All I saw was the light, and it was all I wanted to see. But something started to bother me, niggling at the edge of my conscious. This meant something. What was it?
Slowly, the pieces began to fall together.
In a sudden moment of clarity, I saw the entire picture, and I knew what it meant. Police!
Alarmed, I bolted upright in my seat, and fought to withdraw myself from my private little la la land of light. I didn’t know what was happening, or where the policeman was, but I was painfully aware of how such a state could appear on the outside. My heart beat faster as I imagined the worst case scenario…would the policeman mistake my behavior for signs of illicit drug use? Or something equally suspicious? It’s not like such misunderstandings haven’t happened before.
It turned out to be a routine traffic stop, and the policeman hardly took notice of me in the passenger seat, but that didn’t stop my heart from pounding. It wasn’t until we were a significant way down the road that I finally was able to calm down. Some might be surprised that something little like that can cause so much anxiety – but it’s not at all unusual. When your natural way of responding to the world is routinely judged and misunderstood (sometimes with dangerous results), such a reaction becomes default. And it has real psychological implications.
When did I become so self-conscious of how such differences can appear to others, and so rigid in self-monitoring? I’m not sure. As with many other things, I suspect it’s drawn from a combination of many different experiences, accumulated over a lifetime. I can remember, however, times when it wasn’t so. My earliest memory of feeling this feeling goes back to I was very young, when my father took me to see the Ringling Bros. and Barnum and Bailey circus.
I don’t remember much about the circus itself, apart from certain snippets of sound, the roar of the crowd, and the smell of animal dung. But I do remember, with the pang of a lost love, the moment I first glimpsed one of my favorite toys of the time. We were sitting in the crowd, the lights down, watching the action in the ring, when something caught my eye. From across the room, a beam of light…clear, true and blue. Flashing. Flashing. My attention was immediately captured, and I began campaigning to get my hands on whatever was causing that light.
My father resisted at first, citing monetary concerns, but eventually gave in. I found myself the proud owner of a blue novelty flashlight. One that worked much like the police lights that I would encounter years later. It was designed to be held upright, with a lighthouse-like compartment at the top where a motorized reflector would spin around the bulb, flashing the light through clear a clear blue casing.
I loved it. I stared at it. I loved to watch it flash. After we took it home, I would play with it every chance I could. I’d turn it on and just watch. I especially loved to watch it flash in the dark, the contrast making the light more intense. I began a quest to find the right place in the house to show it to the best advantage.
When the light in my room became too bright, I commandeered my father’s room, where the light was more indirect. Eventually I discovered the perfect solution. The closet in my father’s room, where it was pitch black. I’d close myself in there and watch the flashing light as long as they’d let me. My quest for light only ended when I finally wore the thing out and it would no longer spin.
As odd as it may have appeared to some, I don’t remember my parents ever taking issue with this behavior, aside from worrying that I might accidentally do myself harm, or becoming scared when I stole off to the closet without telling anyone. It was what made me happy. It was eccentric, but harmless.
So, how and where did I learn to judge and fear my own reactions? Well, our society isn’t very good at hiding its biases. It’s not hard to pick up on what the world thinks is “inappropriate” or “wrong.” Sometimes, those messages come from those with the best of intentions.
Collecting is a trait that seems to run in my family. My paternal grandmother collected elephant-themed objects. My maternal grandmother collected rooster-themed objects. My mother collected dolls, as well as pig and frog-themed objects.
My father collected beer cans (until he abandoned it, fearing it made him a poor role model for me), and TV Guides – but his dominant collection was records. It was natural given his encyclopedic knowledge of music. He delighted in the rare ones. His cousin, with whom he was raised as a brother, made a career from this same tendency, opening a very popular record store in a college town.
As for me, my collections were diverse, ranging from more odd items like plastic steak markers garnered from a night out, fortune cookie fortunes, quotes from product packaging, to more socially accepted items such as book compilations of my favorite comic strips or the stickers and trading cards favored by my friends. But the collection that dominated most of my later childhood years is one that shouldn’t come as a surprise. I collected things that glowed in the dark.
It didn’t matter what it was. It could be a decal of the moon. It could be a clock whose hands were touched with phosphorescent paint. It could be a nightlight that glowed from within. It could be an advertising sticker from an HVAC repair company. It didn’t matter, as long as it glowed.
One afternoon, my elder brother’s girlfriend took me shopping in the downtown shopping district near where my brother worked. She was in a generous mood. As we entered a quaint little gift shop, she made me an offer: “Why don’t you pick something? I’ll buy you anything you like. Money is no object.” Then she set me loose on the shop.
Near the checkout, I found what I wanted. “I’d like one of these.” I said, stabbing my finger at the clear display case. When she looked over my shoulder at what I was looking at, she reacted with confusion. “Are you sure you want that?!!” She asked. “I meant it when I said you could have anything you want. Pretty earrings, a purse…anything.”
“I know,” I said. “But this is what I like.” What did I want? Cockroaches. The novelty rubber kind which mischievous young boys love to sneak into a guest’s cocktail. But these cockroaches were special. They were phosphorescent. I liked earrings and pretty things just fine, but they were nothing compared to the opportunity to augment my collection.
She took my point quickly, recognizing her own bias. She wanted to give me a gift that would make me happy, not project her own tastes onto me. She bought me the cockroach. In fact, she bought me a handful. But years later, I still remember that painful moment in the store, standing in front of the clerk, when she questioned my decision.
It showed me all to clearly that to some people, what gave me the most joy would be judged to be “wrong.” Yet, it also taught me the value of knowing yourself, and standing up for what you like. Sometimes, people will listen. They’ll learn to question themselves, instead of you.
I was reminded of this lesson a year or two ago, when I took a weekend stroll into a local sporting goods store. At the entrance of the store was a display. In it were displayed two types of toy balls. One was made of silicone, covered with yarn-like nubbles. I reached out to touch one, and its soft texture reminded me of velvet – one of my favorite tactile sensations.
“Oh, if they only had these when I was a kid. Too bad I'm too old now.” I thought. Then my eye was caught by the occupants of the next display basket. These were filled with clear liquid – and colored glitter. I picked one up. With the disturbance, the pieces of glitter swirled, catching the light, and reflecting back. Clear and blue. I found myself beginning to get lost in the patterns.
Much as it did that day in the car, a niggling voice began to pull at my attention. I pulled back from my private world, startled to see a few feet away a large muscle bound man, standing next to his well-groomed, equally sporty wife. I felt a jolt of fear. Had they seen me? Would they react? What would they do if they did? Did it really matter?
Just to be safe, I dropped the ball, and walked away. I took with me one of the silicon balls, gently tossing it in my arms as I circled the store’s perimeter. As I did, I caught myself thinking. Why was I scared? I wasn’t doing anything harmful. Why should anyone care?
Was I over reacting? Would those two people really have done something difficult to me, or was this just past experience talking? Why was I so worried about being judged? I was an adult…did anyone have the right to judge what I liked, and what I didn’t like?
When I left the store that day, I left with two new purchases in a bag. A little voice at the edge of my mind cautioned me, “People won’t understand. They might judge.”
For the first time in years, I talked back to it. I said:
“But this is what I like.”
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My first book, Living Independently on the Autism Spectrum, will be available in stores in June 2013. It is currently available for pre-order at many major retailers, including Amazon and Barnes and Noble.
Life with Asperger’s: Visual Stimming
When I was a child, I used to engage in visual stimming quite a bit. It wasn't until much later, after I had been doing it increasingly for years, that my mother asked me what was going on. Until that time, I was not aware that when engaging in the activity, I presented anything at all to the outside world.
The High Cost of Self-Censoring
As an adult aspie, I often feel that I need to self-censor in social situations. Don’t say the wrong thing. Don’t stare at people. (But don’t forget to make eye contact!) Don’t laugh at the wrong time. Don’t speak too loudly or too softly or too often or too infrequently. And above all, don’t stim.
I think passing is important if you don’t want to spend all your time dealing with people’s prejudice. Obviously things shouldn’t be this way, but they are. However. I also think that people should have a lot of options available, and should be able to decide at any moment whether it’s more important to pass or to feel good. And that is what I think we should teach people: that sometimes it can be helpful to know how to pass, but that doesn’t mean you have to forget how to stim.
Dennis Debbaudt: Autism, Advocates and Law Enforcement Professionals
Individuals who are fully or semi-independent in the community have reported difficulties when they suddenly encounter a law enforcement professional. Adults with autism say that they often experience anxiety and fear when they think about having these interactions. They fear misunderstandings and heavy scrutiny. Their experiences give them good reasons for this fear. Adults with autism have described encounters with police who roughed up the person when he or she failed to respond verbally during a seizure episode; of being searched and threatened by police looking for a similarly dressed suspect; of being ejected from a building and a public bus for being accompanied by a support dog; and of being searched by police who believed that the person was high on drugs.
No, I’m Not Drunk, I’m Autistic
Dane Spurrell, an 18-year old from Mt. Pearl (that’s in Newfoundland) was arrested and jailed April 18, because police assumed he was drunk. Turns out he wasn’t, but he is diagnosed with autism. When his mother reported he son missing and contacted the police, they reported he’d been jailed.
What’s worse, while the police chief admitted they were wrong, he added that "It's not uncommon, actually, for people, depending on the level of autism, sometimes to be confused with somebody who may be under the influence of a substance.
Autistic Girl Spent Ten Hours in a Cell – Because Police Wrongly Thought She was Drunk
A teenage girl with autism was arrested and hauled before the courts because police mistakenly assumed she was drunk.
Despite being completely sober, 17-year-old Melissa Jones spent ten hours in a police cell, was finger-printed and had her DNA taken.
She was charged with being drunk and disorderly, forced to appear in court and became suicidal while waiting eight months for her case to go to trial.