Yearly Archives: 2013

Communication

Silence III: Intention

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The Scientist and I have done another experiment. A twenty-four hour vow of silence. We began at noon on a Tuesday and finished at noon on Wednesday. The agreement was no spoken communication, but we would text if something urgent arose.

The first couple of hours were odd. I’ve never been intentionally silent simply to see what would happen. I’m comfortable with silence, but I felt like I was having to internalize a new rule, which made me a little tense. Also, there was the factor of the unknown. What would happen? Would we be able to sustain 24 hours of not talking?

After the first few hours, I felt myself start to settle internally. I love the sense of quiet that comes over me when I don’t have to speak or process spoken language for an extended period of time. It allows my internal processes to run uninterrupted. On a practical level, I’m more focused. Emotionally, I feel peaceful.

As the day wore on, I realized a few things:

  1. A lot of what we say in the course of a day isn’t especially necessary. We speak as a touchstone or on impulse or without even thinking.

  2. Without spoken communication, you have to pay a lot closer attention to the person you’re with. I thought it would be the opposite, that we’d feel disconnected. It turns out that not being able to shout from one room to the next about something forces you to be more intentional and aware.

  3. I’m much more naturally inclined to silence than The Scientist is. That’s not surprising.

  4. Being silent created a feeling of being present, focused and energized. I felt more mindful of my actions during the day.

  5. Not being able to communicate complex ideas would get frustrating if I did this for more than a day. We managed to communicate simple things with gestures: time to walk the dog, meet you on the couch in five minutes to watch TV. Beyond that, I had little idea what The Scientist was thinking, which was strange and a bit disorienting.

We managed to make it the full twenty-four hours. Sort of. The Scientist had to take a work-related phone call and he volunteered to go pick up a package at our apartment building’s office. I slipped once and exclaimed “oh” when a man appeared out of the dark beside us as we were walking the dog at night.

All of those felt like reasonable exceptions to the experiment. We never did have to text each other about anything.

leaves

I now understand why monasteries that limit or prohibit talking have strict routines. We relied a lot on routine to navigate the day without speech. We always walk the dog after dinner. We always go to the gym on Wednesday morning. If not for those routines, it would have been harder to get on the same page about all the simple activities that fill up our days.

A caveat if you’re thinking about trying this at home: twenty-four hours of silence can drive you deeply inside yourself. The Scientist and I both agreed that we liked this part of the experience a lot. However, two days later I found myself experiencing some intense feelings that had surfaced as a result. If you decide to take your own 24-hour vow of silence, it’s a good idea to be sure you have a support network in place, in the event that you find yourself having a similar experience.

Like our other experiments, this one has taken on a permanent nature. We’ve decided that from now on, Mondays will be silent. I’m looking forward to seeing what the long-term effects of having one nonspeaking day a week will be. And, of course, I’ll be back to share the details.

Communication

Silence II: Variation

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I have more than one kind of silence. There is the very bad kind, the crushing kind. That one I could do without.

There is also the heavy silence. I can force the words to come out, but each one is an effort, like lobbing boulders out of a pit. They land in the dirt around me, scattered, muffled, obscured by clouds of dust. Lobbing boulders is hard work.

There is the accidental silence. The words fly away, leaving gestures, grunts, nothing at all. “Didn’t you see my eyes get wide?” I ask The Scientist when he wonders why I didn’t warn him about the wall he was about to back into.

There is the silence of too much. Too much input. Too much to process. Too many people, things, noises, questions, answers, objects, movement. I feel myself fading into the scenery, disappearing. I become silence itself.  Continue reading Silence II: Variation →

Communication

Silence I: Frustration

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The first in a 3-part series on silence. 

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My silence is frustrating. For me. For others.

I don’t mean the silence between the words, the comfortable kind, the long drive in the car, relaxed lunch in the park, playing video games for hours side-by-side on the couch, reading together kind of silence.

Frustrating silence is the kind that arises in place of words, filling up all the space where the words should be. It starts with a heaviness in my chest, like my breastbone has become a plate of armor thick enough to stop a lance or a bullet or a barrage of charged emotions.

The weight holds the words down, tethered tight, floating out of reach. I can see them, hear them. Inside me, there is a cacophony of noise as the words rattle and clash, struggling to escape. It feels as if I’m shouting and yet there is no sound, except within me.

Then one breaks free. Two. Five. A phrase or a sentence. Small and inadequate to the task, they float up, fill with breath, are shaped by tongue and lips. Often the ones that escape are the most practiced. Scripts. Platitudes. The reliable “I don’t know.”  Continue reading Silence I: Frustration →

Acceptance

Autistic as a Reclaimed Word

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Most adults on the spectrum prefer to be called autistic, rather than a person with autism or a person who has autism. The general consensus is that autism is not a separable entity. To be “with” something or to “have” something implies that we might somehow be able to rid ourselves of that thing and still be the same person, much like someone who has been cured of a physical illness.

I have always been autistic and always will be. If I was not autistic, I would be a completely different person. My autistic neurology affects how I experience the world and how the world experiences me. I am autistic. This feels very simple and logical to me.

It is not, however, always as simple for others. I’ve noticed that a lot of people in the autism community (which is different from the Autistic community) find the use of autistic as a label offensive or at least uncomfortable. The primary argument is that “autism doesn’t define” the person that they are reluctant to call autistic (often a family member).

Inherent in that argument is the belief that autism is a negative attribute. Why else would someone be averse to being “defined” by a trait? Would we say, “don’t call Tommy intelligent because his intelligence doesn’t define him” or “don’t call Katie blue-eyed because her eye color doesn’t define her.”  Continue reading Autistic as a Reclaimed Word →

Social Skills

Hovering on the Fringe

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My apartment building is testing the alarm system so I’m at the park today, sitting at a picnic table, writing. It’s a beautiful day and the park had been deserted until a few moments ago when a group of kids on a field trip showed up to eat lunch at the picnic tables and play on the nearby playground.

Watching them find seats and settle down to lunch reminds me of how much I dreaded field trips as a kid. The unfamiliarity of the setting. Having to find someone to sit with on the bus. Worrying that I would end up without anyone to hang out with during the inevitable free time we were given as a reward for enduring the educational portion of the outing.

As the kids are finishing up their lunch and breaking into little groups to play football or soccer, I hear a crash. Two boys were off by themselves swinging on the swings and one of them has literally fallen on his face. He gets up, pressing his hand to his mouth, but doesn’t cry or run to the adults for help. Instead he walks off to the side of the playground, away from the group, repeatedly touching his lip and looking at his fingers.

None of the adults notice what’s happened. They’re distracted by the other children, most of whom don’t hesitate to seek out their help or attention.

The other boy on the swings saw his playmate fall and ignored him.

The whole situation feels painfully familiar. The wandering off to play alone. The clumsiness. The embarrassment at getting hurt and the subsequent refusal to seek help. The two boys playing side by side but showing little interest in each other. The invisibility.  Continue reading Hovering on the Fringe →

Acceptance

The Myth of Passing

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Autism is often a hidden disability. There is no universally visible signifier–no mobility aid that we all use, no assistive technology or service animal or language common to all or even most autistic people. While many of us use assistive technology, many others go through our days–our lives–passing for nondisabled.

Or do we?

If you’re autistic, you can probably recognize other members of the tribe fairly easily. Maybe by their stims or their use of AAC, their noise cancelling headphones or by the body language that’s so like your own. We all have our tells.

I know mine. Atypical eye contact and body language are the most obvious. Occasionally my voice gives me away as different–it’s too loud or too mumbly or too flat or simply decides not to exist. If none of those is a tip-off, well, it’s only a matter of time before I have a social communication mishap.

Still, I go through life quite convinced that I’m passing. That my disability is oh so well hidden.  Continue reading The Myth of Passing →

Social Skills

Rules to Live By

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Back when I first started reading about ASD, I came across David Finch’s “Journal of Best Practices.” If you haven’t read it, all you need to know is that after being diagnosed with Asperger’s he started keeping a journal filled with social rules (best practices) that he wanted to remember.

What a great idea, I thought. I should do that!

Yeah. It turns out that I’m not anything like David Finch. He went about cataloging the rules he was learning with a humor and fanaticism that I just don’t have. I wrote down the rules I was learning for approximately . . . two weeks. Then I got distracted by some other bright shiny thing I can’t remember and abandoned the file.

As I was cleaning out my Google docs folder recently, I came across the rules I’d written down. And I have no idea what the point was, because unlike Finch, who actually set about following the rules he’d learned, all I did was write snarky explanations to justify breaking the rules.

That was a year ago, so I thought it might be fun to revisit them. For each, I’ve listed the rule, my response from a year ago and my current response.  Continue reading Rules to Live By →

Diagnosis

Diagnosis Barriers for Autistic Women and Girls

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I’m very excited to announce that I’ve been invited to contribute monthly articles to the Autism Women’s Network. My first piece, Hiding in Plain Sight: Diagnosis Barriers for Autistic Women and Girls, was posted today.

Thank you to everyone who shared their stories last month. It turned out that your answers to my questions were more than I could possibly use in one article. I learned so much from reading your stories. Even though I wasn’t able to quote everyone who participated, what you shared helped me to understand the issues better and I’m grateful for your insight. It’s also nice to be writing about someone other than myself for a change!

I’m in the process of developing two more articles based on the survey questions/responses so there’s a good chance that I’ll eventually include quotes from everyone who shared their thoughts.

I guess that’s it for today. Shortest post ever . . .

Strategies

Asking for Help

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I’ve never been good at asking for help. A few memorable examples to help you understand how nonexistent my “asking for help” skills were as a kid:

When I was five, I fell out of a tree that I was climbing and landed on my back. As you can imagine, I completely knocked the wind out of myself. Not being able to breathe was scary. Falling out of the tree hurt. Did I run to my parents in tears, wanting to be comforted? Nope. I can still remember squatting on the garage floor, crying, trying to catch my breath.

In third grade, during small group reading time, I only brought one tissue with me to the group reading table. I had a nasty cold and quickly used up that tissue plus both shirt cuffs. So I sat there, right next to the teacher, pretending that I didn’t have snot running down my face and that I wasn’t licking it as it reached my mouth. Eventually I guess she couldn’t take it anymore. She went and got some tissues, setting the box in front of me with the admonition that I should ask next time.

In sixth grade, a boy trapped me in the coat closet and kissed me. Not a cute puppy love kind of kiss. More like a gross, smelly, pinned in the corner so hard I couldn’t breathe kind of thing. I spent the rest of the spring avoiding him. He was bigger and stronger and I was afraid of him. I never told an adult. I never asked for help in keeping myself safe from him.

All three of those memories are traumatic in their own way. I remember feeling scared and alone. I don’t remember even thinking about asking for help. For some reason, among all of the options I came up with, none of them involved going to another person to see if they could assist me in solving my problem.

help Continue reading Asking for Help →

Strategies

What I Want

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At the end of July I embarked on a 30-day experiment, the aptly-named “What Do I Want” experiment. My intention was to report back at the end of August with a neat little of summary of what I’d learned.

Well.

Initially, I thought “what do I want?” meant learning to identify my needs and desires. That sounded intimidating. I had little idea where to begin so I began obsessing over decisionmaking. It was concrete and easy to construct rules around. It was also just scratching the surface of what I needed to be doing.

Wading deeper into the experiment, it became more difficult to separate what I want from other big questions of identity. What I am. How I act. How I think. Who I want to be.

I gradually began to realize that being autistic and alexithymic is only part of what makes “what do I want?” so hard to answer. There is a secondary element at work, an old defense mechanism. Wanting something, getting my hopes up, expressing a preference, letting desire creep in–that makes me vulnerable. To deprivation, to loss, to mockery, to pain. Not wanting feels safe. Ultimately, though, all it gets me is preemptive deprivation. There’s a lot of emptiness in not wanting.  Continue reading What I Want →