Asperger's Diary

Life through the lens of Asperger's Syndrome.

Labels and Expectations Part 3: Fear

How does a diagnosis change a parent's expectations?

The last 10 years or so, I have done a lot of thinking about what my life would have been like had I been labeled in childhood. Unquestionably, there are areas where knowledge of autism would've been a godsend. But I also wonder how it would have changed how I was perceived.

Somehow when I think about this, I find myself remembering a particular activity. It's one that I now recognize as a repetitive behavior, which are common among those on the autism spectrum. But when I was a kid, no one paid it much attention.

A bear number scale toy
Someone, I don't know who, had given me a toy that was designed to teach me the basics of numbers and math. It was a "number scale," made in the shape of a large teddy bear, standing upright with its paws outstretched. In each paw was a hook, where you would hang number shaped weights.

The idea was that you'd hang various combinations of numbers on either paw, then press a button located beneath the bear's feet. The weight of the numbers was calibrated so that if you hung a two and seven on the right paw, and a nine on the left, the scale would balance and the base of the toy would let out a cheery, “Bring!”

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If your combination did not balance, the bear’s eyes and body would lurch to the heavy side and the base of the toy would admit a "Waugh" sound, which I suspect was meant to sound like a growl. For a visual thinker, who was a pretty brilliant way to teach such operations — and I got it pretty quickly. After that, well, it got a little bit boring.

So, I started to play new game. I liked to make the bear dance. I'd load up the bear heavy on one side, hit the button, and watch him lurch to the left. Then I’d load him up again, hit the button, and watch him lurch in the other direction. Left. Right. Left. Right.

Then I'd start to make patterns.

Left. Stand. Right. Left. Stand. Right.

Then I made the more complex.

Left. Left. Right. Stand. Left. Right. Right.

I started paying attention to the noises the toy made, and I started making patterns with them. It was as if the bear was making his own music.

Bring. Bring. Waugh! Bring. Bring. Waugh! Bring. Bring.

Waugh! Waugh! Bring. Bring. Waugh! Bring. Bring. Waugh! Waugh!

Then I paired the two together, to make patterns of movement and sound. It was as if this bear was both an instrument and a dancer, and I was both composer and choreographer. I loved this, and could keep myself occupied with it for hours at a time.

My parents never paid much attention to my odd little game, and in fact I think they may have been grateful for it. It was just the type of thing to keep me occupied and out of trouble when they needed to make dinner or conduct some other adult activity. Eventually I grew out of it, but it still remains a fond memory of mine, one that I now recognize probably has a lot to do with autism.

Knowing that, I sometimes wonder how it would have been viewed had my place on the spectrum been known. Sometimes, I imagine an alternate reality. One in which my parents have gotten a diagnosis, and with it a dose of what I like to call "the Nevers."

Now, instead of being in an adjoining room making dinner or doing bills, they stand in the doorway of my bedroom is worried expressions on their faces. They watch me playing with a new perspective. Suddenly, my innocent game doesn't seem quite so innocent.

They watch me for a few minutes, with increasing agitation, until my mother finally turns away with tears in her eyes. "The Nevers" play in her mind: Never get married. Never have a job. Never live a normal life. How will I ever beat any of these, if I can't even figure out the concept of basic math? If I only seem to get the right answer a fraction of the time?

She composes herself, wipes the tears from her eyes, then kneels beside me. "No, honey — see, this is how you do it!" She takes the toy and demonstrates the “right” way to play with it. She explains concepts of addition and subtraction.

I'm annoyed. Not only for her words that imply I don't know a concept I’ve long since mastered, but because she's interrupted my symphony. Now, it's ruined. I jerk back the toy, and begin my symphony all over again. She makes a few more attempts, and in the end gives up in sadness and despair.

Later that night, she lies awake in her bed. "The Nevers" come back to haunt her again. Never get married. Never have a job. Never live a normal life. She cries. She worries. She fears. Then she gets angry.

"Not my little girl!" She thinks. She'll make sure of it. It will start tomorrow – with that bear toy. If she can get me to understand what it means, if she can get me to do it “right” every time, it'll be proof. Her child will be successful. She'll make sure of it. It's a mission.

This is how the battle of the bear begins. She seeks me out in my room is I play, and tries to teach me. Again I'm annoyed, angry. Why does she think that I don't know?

My mother persists. At stake for her – my future success and happiness. I resist. At stake for me — my joy, my fun, my creativity. But I don't have the skills to communicate this. Defiance is my only option. One I exercise vigorously.

It goes on for hours, until both of us give up drained. Her, in despair and anguish, angry at her fight with autism.  I, in sadness, frustration, and anger. Why is it wrong for me to have fun? Why doesn't my mom think I'm smart?

These battles go on for weeks, even months. I wonder, at the end of it, what the outcome is. Do I finally give in and play "right"? Or, tired of the battling, do I just refuse to play altogether? Does she finally give up, believing that I'm hopeless to teach?

I wonder what activities and learnings fall by the wayside. How different does my childhood look? How many of my fond memories are substituted for battles like this one? Are other things that helped me learn now discounted because they are too solitary, or weird?

The structure of a leaf
http://www.flickr.com/photos/47108884@N07/4595559479/
I think about the afternoons when I would go walking with my father in the woods, exploring the biological world. The feeling of awe at the structure of a leaf, or curiosity about the behavior of a squirrel. The wonder of discovering the world contained in a single drop of pond water, seen through a microscope. These were the building blocks of my interest in science. Would these memories exist?

I wonder how much harder I would have to work to prove that I know what I know? If my strengths are not recognized, how well are they developed? And how do these battles impact my self-esteem and confidence? What would my alter ego look like today? Would she be in the same place that I am today? I really wonder if she would.

When I imagine this alternate scenario, I feel an overwhelming urge to talk to this alter-mom. I want to show her my life as it is now. I want to talk about "the Nevers." I want to tell her, “Doctors are not wizards. They can't tell the future any more than you can.”

I want to ask her to question fear. I want her to see ability instead of presuming disability. I want her to see that different doesn't always mean “wrong,” and that reality isn't always as it appears. Perception is not incorruptible. Fear magnifies challenges in ways that can be damaging.

There are times when a game is just a game. Sometimes, I want to tell her, it's okay  to make the bear dance.

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Related Reading

Kate Ahern—Living the Least Dangerous Assumption
Ignore the nay-sayers and negative people who see every student action through the lens of the lowest possible level of understanding and imply your presumption of competence is no more than your projection of your wishes for the child

William Stillman—Presume Intellect: 10 Ways to Enrich Our Relationships Through a Belief in Competence
All of psychology and psychiatry is educated guesswork; no single clinician can state with absolute authority what someone experiences in the way that medical science usually can. In considering three factors, insight, foresight and hindsight, we need to encourage others and ourselves to look beyond our history of deficit based labeling in favor of perceiving a person’s humanity—regardless of their diagnosis or way of being. The label which may perpetuate clinical myths and stereotypes is an incomplete truth; it should be but one point of reference in fully supporting the whole person.

Lynne Soraya is the nom de plume for a writer with Asperger's Syndrome.

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