The Daily Anxiety of Living with Autism and Asperger's

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The year was 1982.  Ronald Reagan was in office. "Don’t You Want Me, Baby?" was on the radio, and the smiley face emoticon was born.  But what I most clearly remember about, like, that year isn’t valley girl speech or, like, Ms. PacMan. It is "E.T.", the Reese’s-pieces eating alien who I was absolutely sure was hiding in my closet. Try as they might to counter my certainty that there was not an extraterrestrial lurking in my bedroom, my parents couldn’t convince me otherwise.  So I clutched my teddy bear for reassurance, and sat there on my bed — scared — pit-of-stomach, cold-sweat, freak-out-if-you-touch-me terrified.

I’d venture that most everyone has felt that kind of fear at some point in his or her life.  But try this for me: Allow your body, not just your mind, to remember that feeling — your heart thudding, mind racing, stomach lurching, your little self ready to run or fight against any shadow. Everything about fear is primal — irrational.  There’s no logic involved.

Anxiety is little bit different. Imagine that fear turned down just a bit so that it’s not so immediate a threat or so acute a danger.  Instead, it’s replaced by a gnawing, jittery, ever-present sensation of waiting for the threat …. waiting for the fear. What most neurotypicals don’t realize is that we spectrumites (that is people on the autism spectrum), whose bodies and minds are wired differently, live with varying levels and intensities of almost perpetual anxiety. Most "aspies" or "autistics" have been bullied, are constantly assaulted by sensory input, must fend their way daily through social situations which seem random and chaotic, and often think we are at the top of our games when, in fact, the rug is about to be pulled out from under us.  In other words, our anxiety is an absolutely rational reaction to the experiences we have.

Pull at a weed and simply tear off the leaves, and what happens? Nothing new. The weed grows back. Similarly, if teachers, caregivers, therapists, spouses and friends focus their energy on tantrums and meltdowns, obsessions or rigidity, they’ve only torn at the leaves.  Nothing will change — either in the behaviors or in the heart of the loved one living with Asperger’s or on the autism spectrum. But grab that weed near the base — dig at the roots, and pull — gently.  What happens? Another weed may grow elsewhere, but that one is gone. Anxiety is that root. It is the seed from which our topical fixations and "overly sensitive," routine-driven, obsessive behaviors arise. We are trying to create predictable order in a chaotic, often random world by asking a million questions, by challenging exceptions to rules, by scripting dialogue we know was funny (once) or dictating play. It’s not that we want to be difficult or dominate the conversation with topics; we just want to feel secure, safe — and to be able to stop the endless waiting for unwelcome surprises.

For those who work or live with, or know folks who have Asperger's syndrome, remember these four things:

1. Respect the fear, don’t punish self-protection. If you know danger may very well be waiting outside the front door, would you skip and whistle on out? No. You’d do or act however you needed to in order to feel safe again.

2. Reconsider disruptive behaviors not as disobedient or disrespectful, but as the individual’s method of protecting himself from something painful or scary. 

3. Show empathy or compassion for those very real feelings.  That’s going to get you both much further than a shouting match ever will.

4.  Plan ahead, communicate and make the environment predictable.

Those of us on the spectrum want to be liked; we want to please — even to impress.  We certainly don’t want to be the problem. If you can remember that in the hardest moments, if you can remember what the feeling of true fear is, if you can hold first in your mind that the behaviors society likes least are actually the fruit of very real anxiety, then you can respond not with anger or shame, but with understanding and a plan. Like I did years ago, we need allies — stuffed or otherwise — to cling to until we can steady ourselves … until we can see, peeking through the fear, the safety and calm of an unsullied tomorrow.

Jennifer O’Toole is a Charlotte mom and author of multiple books about living with Asperger’s, including recently published "The Asperkid's Game Plan." O’Toole, her husband and three children all have Asperger's syndrome.

*This article first appeared as a blog on the Autism Society of North Carolina website and is reprinted with its permission.

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View all articles in the 2014-15 Exceptional Child Guide