Sunday, April 4, 2010

Untangling

By now, many of you have heard the story...

Once upon a time there was a blogger named Smockity who took her kids to the library one day and found herself next to an autistic girl and the girl's grandmother.

Smockity went home and wrote a blog post about how she considered, "jabbing a ball point pen into her eye" rather than endure the autistic girl's unusual behavior and grandmother's indulgence of said unusual behavior.

I'm going to spare you a link to the original piece (it's gone now anyway) but as you can guess, lots of other bloggers including JennyAlice and MOM-NOS and Jean Winegardner and many others - responded with their own posts about tolerance and compassion and giving kids and their families the benefit of the doubt. A tsunami of backlash eventually prompted Smockity to write an apology.

I don't need to pile on. These posts are insightful and heartfelt and echo my feelings on the subject.

However, the whole incident did get me thinking about situations where I feel particularly self-conscious, where I feel like onlookers like this Smockity woman might be thinking that Ben is spoiled or a badly-behaved brat due to my permissive or inept parenting.

One of those situations is when Ben is perseverating.

Perseverate: (verb) To repeat something insistently or redundantly.

There are probably as many ways to perseverate as their are kids who do it. It could be opening and closing a toilet lid, or opening and closing a mailbox, or watching the same 5 seconds of a TV show over and over and over, or lining up objects, or asking the same question again and again.

Perseveration probably functions in a few different, but related, ways.

Repetition can be calming, and a way to block out unwanted stimulation. It can produce the OCD-related high of compulsion completion, as Squidalicious describes. It could be the result of pattern seeking. It could be a desire to exert control on a world that often seems chaotic and unpredictable.

One of Ben's current perseverations is to demand that the people around him recite or act out various scenes from books or movies. This is not the hey-let's-play-robin-hood imaginative play. This is an insistent, almost anxious barking of stage directions and lines, often to befuddled friends or family members who don't realize they've been cast in a very SPECIFIC production.

Or it might happen in a public space, where passers-by might not understand how it could be really important for a boy and his mom to stage a scene from Toy Story 2 in a grocery store or museum gift shop.

I'll acknowledge that this particular fixation is a lot easier to disguise as typical play than things like hand flapping or banging objects together. But like most perseverative activities, the problem is less the activity and more what happens when the activity is interrupted.

Redirecting and interrupting perseveration is a delicate task.

I think of dealing with perseveration as trying to untangle a bunch of small fragile necklaces that have become knotted up with one another in a jewelry box.

You can't simply yank them apart or the tiny chains will break. You have to patiently, gently tease them apart. It takes patience, focus and loving perserverence. While you're doing it, you feel like you're not making much progress, and sometimes even making it worse by getting the chains in more complicated knots.

I can't tell Ben, "Just STOP IT NOW!" when he gets into a perseverative mode because this will result in a much more difficult problem than a fixated child.

I normally allow him to continue what he's doing for a bit, but try to find an opportunity to get his attention - I ask him to press the "pause" button on his nose - to tell him calmly that that this isn't a good time for pretending so we need to find a place to say "to be continued..." in the story, or that we can tell the story for two more minutes and then we're going to switch activities.

It doesn't always work the first time. But after a few (or several) attempts, he'll usually agree to the deal. Other times, I can interrupt his intense focus on books or objects by saying, "Ben, we're going to switch gears in 5, 4, 3, 2...okay: switch gears."

I think many of you probably have developed your own strategies of gentle, not so immediate or abrupt, redirection of perseverative activities. You know what it looks like when the chain links are yanked apart and it's not pretty. You know that spending a few extra minutes to gently untangle is so much better than the alternative.

But to an outsider like Smockity, these strategies probably just look like indulgent, permissive, wimpy parenting: "Why doesn't she just tell him to knock it off?" "Who's running the show here?" "Why can't she control her kid?"

The truth is that some chains can withstand a little yanking, but others can't.

Jean Winegardner says it much better, and without the tortured jewelry metaphor, so I'll leave you with this thought in honor Autism Awareness Month.

...I ask that next time you see a child acting unusually, or next time you see a person who is acting in a way that you consider inappropriate, take a minute to consider that you don't know the whole story. Understand that there might be factors at play that you aren't aware of, whether they be behavioral, emotional, medical, or something else. Remember that some disabilities are invisible. But mostly understand that the wonderful diversity of all of our members of society makes our world as a whole better.


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