Tag Archives: sensory

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A pop culture spectrum

Starting this year, autism is officially defined as autism spectrum disorder, instead of the five separate diagnoses that used to be lumped under “the spectrum.” There’s a lot of discussion whether that’s wise and what it will mean for treatment. We’ll see. In the meantime, since we’re stuck with it, I thought a parallel spectrum depicting the portrayal of autism in popular culture might be a fun exercise. From left to right, lower-functioning to higher, here goes:

Rain Man: Premiering in 1988, Dustin Hoffman’s character of Raymond Babbitt is introduced as an “autistic savant” with an extraordinary memory. He’s lived most of his life in an institution — probably more a reflection of his times than his abilities. He adheres to rigid routines, notably watching Jeopardy every day, where he knows all the questions. He can’t tolerate flying, so he and his brother Charlie (Tom Cruise) embark on a 2,000 mile journey by car, during which their family story unfolds.

Christopher Boone, protagonist, The Curious Incident of the Dog in the Night-Time: Published in 2003, this novel was a watershed moment in autism awareness. Author Mark Haddon‘s international best-seller is the story of 15-year-old Christopher Boone’s investigation into the murder of his neighbor’s dog. Along the way, Christopher, who has autism, finds out much more than he bargained for about his parents and himself.

Robby Palmer, my protagonist, Sparrow Migrations and Plover Pilgrimage — Notice the orange background? That’s a deliberate homage to Curious Incident. While Robby has some precise routines (on the school bus, he always chooses the sixth seat back on the driver’s side) he’s not as rigid or OCD as Christopher, who won’t eat if something on his plate touches something else.  Robby, 12, can tolerate touch from his parents, Sam and Linda, while Christopher can’t. But both are left-brain inclined; Robby is good at biology while Christopher is a maths whiz. And they have similar sensory sensitivities to noise and crowds. Robby copes with hoodies and headphones; Christopher with rocking, groaning and covering his ears. Robby likes to spin, either in a chair or by himself, while Christopher strokes his pet rat, Toby.  Robby and Christopher’s parents are similar, too. Both are loving but worn out and frustrated from coping with the stress of autism.

Max Braverman from Parenthood: Max was introduced as having Asperger’s Syndrome when the show debuted in 2010. That’s one of the sub-spectrum diagnoses that the American Psychiatric Association has now lumped into the broader autism spectrum. Max is obsessed with bugs and seemingly isolated inside his large, boisterous, affectionate family. Like the others, his facial affect is typically flat, revealing little emotion. I’m two seasons behind in my show viewing (hey, I’ve been writing a novel!) and on Season Three, Max was just “mainstreamed” — moved from a special education class into a regular ed classroom.

Temple Grandin: Some might say Grandin, 65, doesn’t belong on my spectrum since she’s a real person. But as the world’s best-known person living with autism, I had to include her. Her niche, like Max’s bugs, Christopher’s investigation and Robby’s birds, is animals — specifically the humane handling of cattle in feedlots. A PhD., she revolutionized feedlot operations with her handling systems that capitalized on the intuitive behavior of cattle. She’s written extensively about living with autism. As a woman with diagnosis, she’s a minority within a minority, since males are four times more likely to be affected than females.

Who did I miss? If you’re a neurotypical, does my spectrum help you understand autism better?

–The letter S brought to you by Daily Drop Cap.

 

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The hoodie risk

  • Hoodie 1 – Sept. 2010
  • Hoodie 2 – Oct. 2010

    • Hoodie 3 - Sept. 2011

    Hoodie 4 - Dec. 2011

    Hoodie 5 - March 2012

    Unless you’ve been living under the proverbial rock, you know that George Zimmerman shot and killed an unarmed teenager, Trayvon Martin, on Feb. 26. That he was free until yesterday triggered a national uproar.

    News reports have said the fact that Martin wore a hoodie apparently contributed to Zimmerman’s conclusion that Martin was “suspicious,” and led to far more high-profile defenses of the hoodie as a functional, innocent garment than mine here.

    Still, I offer mine into the mix to add another angle. My six-year-old son has favored hoodies, well, forever. Hoodies are one way he copes with the sensory issues that accompany his autism.

    When he was younger, his auditory sensitivity was worse. Take him to a coffee shop, for instance, and he’d clap his hands over his ears the moment the espresso machine started up. He freaked out at the swimming pool if anyone even got near the diving board, fearing the loud, echoing reverberations of the board’s springs. (Not coincidentally, hoodies aren’t practical at a pool, and we often wound up having to leave.)

    It’s not so acute now. But the hoodie still provides him a measure of comfort and confidence that was, I thought, fairly benign, not to mention cost-effective, compared to the other ways of managing sensory issues (pharmaceutical, occupational therapy, etc.) Then came Feb. 26.

    Yes, my son is white and not yet four feet tall. But he’s going to grow. And depending on your perspective — put pants on him in photo 2 above, for instance, — his race isn’t evident. In addition, his struggle to read social cues means he’s less aware of the message risk of wearing a hoodie sends.

    Re-reading that last sentence, I shake my head. The risk of wearing a hoodie. Unbelievable. And unacceptable.

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    Just do it? Wish I could.

    “Can’t you just flip them?”

    So asked the teacher giving car line 101 to new parents at the school open house tonight. She cocked her head and looked at me, expecting a nod of acquiescence, as did the circle of other parents.

    Well. Yes. Technically. I could flip them. Our kids’ car seats, the subject at hand, that is. But I couldn’t just.

    Owen, our on-the-spectrum, soon-to-be kindergartener, always sits on the driver’s side. Audrey, our neurotypical daughter, always sits on the passenger side. We’ve had both our cars set up that way since Audrey’s birth nearly three years ago meant adding a second car seat. (Pic is from two years ago, when we got our current car.) It’s convenient to have it the same way in both cars. Like hot water on the left and cold on the right, it’s fostered instinctive habits. No one has to think about who sits where. They just — there’s that word again — sit.

    Now, however, sitting on the driver’s side means at school, Owen would have to be discharged onto the less-safe street side in the car line, vs. the safer, sidewalk side. Thus the teacher’s suggestion: “Can’t you just flip them?”

    On the face of it, a completely reasonable solution. But there’s a galaxy of assumption in “just” — and assumptions are an indulgence parents of kids on the spectrum can’t often afford.

    Reliance on routine is one of the hallmarks of people on the autism spectrum. Think how you’d feel, reaching for the right-side tap, if you found it hot instead of cold. Startled. Confused. Perhaps, if it came out too hot, you’d even burn your fingers a bit. Diminished confidence, uncertainty, even anxiety might affect whether and how you used that faucet next.

    Hardly an ideal state of mind for a child, already behind his peers in social and communication skills, to arrive in on what’s sure to be an anxious first day of school.

    Oh, maybe he would be fine. If I’m to hold myself to my own hypothesis, I can’t assume flipping the car seat would trigger a downward spiral. But again, with kids on the spectrum, you can almost never know. A couple years ago, when he lost his favorite stuffed penguin on an airplane, we thought he handled it fine. Then, eleven months later –almost a full year — he abruptly and completely fell apart one evening, grieving for the penguin. Experience has taught us we can’t “just” make a change, even a seemingly minor one, and reasonably assume it will all work out fine. Worst-case scenarios, repercussions and side effects, must all be imagined, evaluated and traded off. Or it’ll come back to punch you in the gut nearly a year later, in the form of a little boy sobbing his heart out on Christmas Eve.

    Further complicating the situation is the fact that we’ve lately had a problem with him unbuckling his sister’s car seat – behavior driven, we think, by his autism-associated obsessive-compulsive tendencies. As a deterrent, we threatened to switch the seats. Compliance has improved (though the duct tape plastered over the buckle might be a factor, too — again, never assume) So a switch now would look like unjust punishment.

    He could crawl across his sister, who will be accompanying us to school. But to avoid squashed knees and backseat howling, we’ve always enforced a “use your own door” rule.

    As the least-bad option, we’ll probably wind up choosing this one.  But just do it? Easy for her to say.