Written by David Royko, licensed clinical psychologist and director of Family Mediation Services of Chicago's Circuit Court of Cook County, and writer. This story is reproduced here with permission, but was originally published on his blog, http://juggling-autism-the-chronicles-of-ben-royko.com/.
Ben loves Golden Books.
No, really, he loves Golden Books.
Make that he LOVES LOVES LOVES Golden Books.
I don’t know if the clerk at Barnes & Noble loves Ben, but hey, the customer’s always right, right?
Oh, and he chose exactly one.
When I posted this pic to Facebook, several folks asked a reasonable question – Did we pick up and re-shelve (or more accurately, re-turnstile) the books before we left, or did we leave it for the Barnes & Noble staff to deal with?
Which means:
It’s time for another lesson in SEVERE AUTISM 101!
Parents of, loved ones of, and those who know or work with guys and gals like Benny Boy can move along – nothing you don’t already know here.
But for the rest of the world, gather ‘round the campfire.
When Ben’s twin brother Jake did the same thing as a toddler (and yes, in many ways, Ben is an eternal toddler), you are darn right we didn’t leave until it was picked up. Most parents with “neuro-typical” kids would do the same as we did with Jake.
And most parents to severe autism would do the same as I did with Ben. (Karen wasn’t right there because she was on cookie detail.)
When Ben got up from the book-covered floor with his choice in hand, I instantly started picking up books from the floor, and handed one to him to put back, which he did. By the time I grabbed another one, he was already five paces toward the Starbucks kiosk and the sugar cookie bought preemptively by Karen, awaiting his arrival (Starbucks lines are very bad news for Ben).
I tried feebly for about three (or two) seconds to get him to return, but I ended up having no choice but to leave the floored books for the Barnes & Noble staff, and follow Ben as he practically sprinted the length of the store to the hallowed cookie.
(And as an aside, not to sound callous, because I do try to clean up our own messes, but my attitude at times like this is — That’s why it’s called “work.” As I have told myself many times at my own work, I’m happy to do the stuff I like, and I get paid to do the stuff I don’t).
I actually did them a big favor by not pushing it. Every single staff member, I am certain, would much rather pick up and re-shelve some Golden Books than be around a very loud and angry (and six foot two inch) Ben. Parents to guys like Ben know what it’s like to always be ready for a blow-up.
Even if they have become relatively rare with Ben, blow-ups can happen at any time, in an instant, for reasons known, or suspected, or just guessed at, or completely unknown. If you already know what a trigger might be, you avoid it, even if it means some additional hassle – for us, or for a store clerk. Maybe Ben got off easy by not having to “clean up, clean up, everybody, everywhere” (parents know the tune). But the book store staff also got off easier with the mess, whether they know it or not. Parents to severe autism who happen to be reading this are nodding their heads.
But also know this. Every time we venture into the outside community, parents and caregivers of people with severe autism try, constantly, to minimize any negative impact our children, from toddlers to adults, might have on the outside world. We don’t always succeed. Much of the time, it is a matter of keeping them happy, or at least not too unhappy, or frustrated, or frightened. For us, this might look like:
Saying, “Sorry folks, it just means he’s happy,” to very startled people in a cavernous art museum gallery, or a shoe store, or an elevator, wondering who just yelped as loud as a bomb blast for no obvious (to them) reason, or…
Trying to clean up a public bathroom we’ve just used and abused in ways nobody would want to imagine (which once resulted in a feeling-guilty self-imposed exile from Costco – THOSE were workers I genuinely felt bad for), or…
Apologizing to a stranger we just passed in a hallway after Ben bumped shoulders because he has no sense of, or concern for, personal space, or…
Karen explains in two seconds (“Sorry, he’s disabled”) to a family eating their burgers why Ben stopped as he passed their table to bend over and look down menacingly at their fries, as I push him along saying, “No Ben, those are THEIR fries,” which of course he knows but could give a hoot – Ben’s philosophy with food is, “What’s Mine is Mine, and what’s Yours is Mine,” or…
Saying, “Sorry, he thinks he knows you,” as Ben tries to back up into a total, and mystified, stranger, imploring, “On my back please,” which translates to, “Give me a bear hug from behind and lift me off my feet,” a.k.a. Deep Pressure, or…
Saying to a full restaurant dining room, “Sorry folks, he’s severely autistic and hates waiting for food, but he’s harmless,” after Ben let out a pissed-off fortissimo holler and the room just went silent with all eyes on us (and the eyes of kids staying on us long after their parents have politely looked away, except for those adults who smile and nod because they know someone like Ben), or…
Leaving a hundred Golden Books on the floor for someone else to shelve.
Ben is a One-Man Autism Awareness Squad. I am specific when I give my brief explanation (sometimes only four words: “He has severe autism”) to those who have “noticed” him in public. And most people really do get it these days. Often, they’ll say they have a son, daughter, grandson, niece, nephew, brother, cousin, friend, who is autistic. (Yes, there is an autism epidemic. No, it is not because it covers a wider spectrum. No, it is not simply “better diagnosis.” It is real.)
In our quarter-century of being immersed in the world of autism, this “awareness” has been a big change. In the days when Ben was newly diagnosed, we got stares and frowning judgmental glances when his behavior lapsed into the distressing or the loud or the annoying. Now, maybe after an initial startle response, we usually get nods, sympathetic smiles, or simpatico comments from fellow travelers.
Incidentally, as I rushed away, I did say to the Barnes & Noble clerk in Ben’s vicinity that I was sorry and that he is severely autistic.
She just nodded. And smiled.