The Agents of L.U.S.T.

BlogHer Original Post

Or, how our friends and family have my autistic son's back.

L.U.S.T. is The League of Unrepentant Straw Thieves. It is a grassroots, volunteer-only organization dedicated to a single mission:

Swiping drinking straws to support my son’s straw habit.

My son is obsessed with straws, and not in a tiny way. If we let him, he would chew on and fiddle with a straw, all day long, every day. In bed. In the pool. In the bath. On the trampoline. On the toilet. It’s a challenge, but, in some ways, it’s also an opportunity.

Our friends and family constantly search for ways to support and interact with Leo. It’s not always easy – that is, unless they're bearing straws. Then they get giggles, squeals, maybe even a bear hug. Who wouldn’t want to elicit such enthusiasm from an occasionally inscrutable boy? And who wouldn’t want to join an organization with such a saucy acronym?

The agents of L.U.S.T. are dedicated, and sneaky. They keep Leo well-supplied with contraband. They are experts at slipping out of restaurants with a fully paid bill (and generous tip) to distract from the extra straws in their pockets.

L.U.S.T. agents have no problem hopping into the car with me and Leo – even on a
Thanksgiving evening – and cruising the Starbucks stall in a local grocery store for a few pieces of The Good Stuff, because they know that those straws might make the difference between a successful and an explosive dinner.

They check with Leo regarding prime targets, as my son has regional beverage-purveying establishments’ straws mapped out by color and quality. Peet’s Coffee? Blue straws, those are good. Burger King? Red, very pleasing. Starbucks? Green straws, superior. Costco? Clear straws, mediocre, will do in a pinch. Tapioca Express? The Mt. Olympus of quarter-inch-wide boba straws. Woe to the uninitiated Leo companion who thinks they can bypass a drinks merchant without being pressed into pilfering!

Straws aren’t a new thing. Leo’s been craving them for more than two years. Why does he want straws? They are a stim, a sensory component of his autism. They give him something to do, as he finds self-direction difficult. They help him self-regulate. They're part of who he is.

Amanda Baggs, a person with autism, made a video called In My Language to communicate what stims mean to her. I think Leo shares some of her feelings.

Stimming with straws is important to Leo, and it must be gone about properly. Straws must be molded very specifically, chewed in an L-shape that can be flicked at the corner of his vision, or spun around in his mouth. Straws that are too flimsy or rigid are discarded, much to the dismay of inexperienced L.U.S.T. recruits.

Straw

But when the straws are good, there is instant happiness, followed by a few moments of bliss as he breaks in his new straw. His equilibrium is restored, and he can attend to an activity or transition to a new one, or even play independently.

Straws also stimulate some really fine language: “New straw! New GREEN straw! I want a new straw! Mommy, I want a new straw PLEASE! Mommy! MOMMY!” This is Leo's own language, this fluent requesting. Straws get him to use that sweet, underused voice.

But straws aren’t always beneficial. Occasional straws calm him down, but too many in too short a time period can lead to hyper-arousal. His jonesing gets in the way of his ability to function; he’ll go on a straw jag and need a “new one!” every few minutes, to the exclusion of all other activities, and with serious and aggressive tantrumming if his demands are not met.

Supervisor M, who has overseen Leo’s behavioral program for almost six years, has worked very hard to support his love of straws while not letting it interfere with his ability to function. She is not trying to extinguish his straw use, but rather incorporate it, predictably, into his day. She has made visual icons for straws, and they are part of his visual schedules at home and at school.

Leo's Portable Visual Schedule

In the classroom, where he enjoys a rich and predictable routine, he is down to two straws per day. If he’s desperate for a straw at home, he will let us know by rearranging his schedule so the straw icon comes next.

Occasionally, when Leo is having a rough time, a straw becomes part of Whatever It Takes. Sometimes this means another straw extraction mission (drive-through works best under stress, though this means having to ask for the extra straws and is not a practice encouraged by L.U.S.T. agents). Then, hopefully, he’ll be a happy boy again.

We understand his stimming, when it’s good and when it’s bad. Our friends and family do, too. They love our son, they know that straws make him really happy, and they want to support him. They’re his corps. They are proud agents of L.U.S.T.

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Other perspectives on compulsions, stims, and accommodations thereof:

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