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Editor’s Note: This week’s blog post was submitted by Jennifer O’Toole, award-winning author of Asperkids: An Insider’s Guide to Loving, Understanding and Teaching Children with Asperger Syndrome. O’Toole, her husband, and her three children all have Asperger Syndrome.

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, like, what I most clearly remember about, like, that year isn’t valley girl speech or, like, Ms. PacMan.  It is E.T., the Reeses-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, in fact, an extraterrestrial lurking in my bedroom, my parents couldn’t convince me otherwise.  So I clutched my teddy bear for reassurance, and sat there in my bed — scared.  Now, I’m not talking nervous or “trying to sneak into bed with Mom & Dad” scared. No, I mean to the pit of stomach, cold sweat, freak out if you touch me terrified.

I’d venture that most everyone reading this 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.  That’s what fear actually is, you see. It’s not a concept or idea, it’s not a topic to be discussed rationally.  Everything about fear is primal – irrational…and bodily.  There’s no logic involved.

Anxiety is little bit different. Imagine the volume of that fear is turned down just a bit so that’s 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.  It’s like living with the “Jaws” music playing.  You don’t see the danger.  But you surely know there’s something “out there.”  That’s anxiety.

What most neurotypicals don’t realize is that we spectrumites, whose bodies and minds are wired differently, live with varying levels and intensities of almost perpetual anxiety. That may sound paranoid — but it’s not.  Paranoia is irrational fear.  Most Aspies or autistics have been bullied (often many times over by children, adults, even teachers and family members), 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.

So why does this matter? Simple. 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.

But grab that weed near the base – dig at the roots, and pull – gently.  What happens? Yes, another weed may grow elsewhere, but this one is gone.  Anxiety is that root.  It is the seed from which our topical fixations and “overly sensitive,” routine-driven, black/white, obsessive behaviors arise. We are trying to catch the rain. 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 unlikeable or difficult or dominate the conversation with topics you don’t enjoy.  We just want to feel secure, safe — and to be able to stop the endless waiting for unwelcome surprises.

What that means for those who work with, live with or know folks like me, my children or my husband (all of whom have Aspergers):

• Respect the fear, don’t punish self-protection.  When you feel truly scared (think back now!), are you polite? Easy-going? 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.  That’s a GOOD thing.

• Reconsider disruptive behaviors (meltdowns, outbursts, “heels dug in” resistance) not as disobedient or disrespectful, but as the individual’s method of protecting himself from something painful (sensory?) or scary (socially, physically or emotionally).  Show empathy or compassion for those very real feelings.  That’s going to get you BOTH much further than a shouting match ever will.

• Plan ahead, communicate, and make the environment predictable.
  • Use visual aides to assist progression through multi-step sequences
  • Keep materials (from paper to shoes) in consistent locations
  • Mention routine changes as soon as possible
  • Play “what if” to walk through “worst case scenarios” and discover that there is almost always a solution or safe response within our control
  • Make play-dates “task-centered” (baking cookies, building Legos) rather than a free-for-all
  • Tour new environments during off hours (school, religious education, club activities)

• Teach coping mechanisms
  • (deep breathing) “smell the flowers. blow out the candles”
  • allow the use of hand-held fidgets
  • role-play social scenarios
  • eliminate timed performances
  • give tasks or structure to “free time” (i.e. recess)
  • assign a few trustworthy “buddies” to be work partners, share lunch, and answer questions be they social or academic so a child doesn’t have to search for support

• Allow time for special interests.  Delving into dinosaurs or the British monarchy may not make you feel relaxed, but a bounty of unchanging facts is something in which spectrumites can immerse ourselves and escape (for a limited time) to a safer, more ordered place (“Concentration, said Jack Nicklaus, “is a fine antidote to anxiety.”)

There was no alien in my bedroom back in 1982, of course.  But in thirty-seven years of living as an Aspergirl, I’ve met very real danger in places and with people that should have been as familiar and safe as a childhood haven.  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.

Courage is, after all, the choice to feel fear and to master it – to do the “scary stuff” anyway.  Those of us on the spectrum have to choose to be courageous almost every day…like that little girl in the bedroom back in 1982, when we are afraid (even if that fear is unnecessary), we certainly don’t want to feel condescended to or be punished.  We need understanding, respect, patience.  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.

Tags: Anxiety, Asperger Syndrome, Autism spectrum Go back