With 1 in 110 children in the US now diagnosed with an autism spectrum disorder (ASD), it’s become more likely that you know a child — a relative’s, a friend’s, a neighbor’s, your own — or someone who’s autistic or who has Asperger’s. Children and adults on the spectrum can have significant challenges in social interactions and in communicating (some, like my teenage son Charlie, may be minimally verbal or not be able to speak at all), as well as cognitive difficulties due to neurological issues.
Order and routine are not simply important but essential for many autistic individuals who may become intensely agitated and even feel physical pain when that order is disrupted. Holidays — when schools are closed and many take vacation — are, therefore, almost by definition likely to be challenging. What follows is a selection of some things about holidays that can be difficult (especially from a sensory perspective) for those on the autism spectrum, based on our experiences navigating 14 years of holidays with Charlie.
(1) Special Holiday Foods
What are holidays about but stepping away from one’s usual routine, about having days off from school or work; about doing things you wouldn’t ordinarily do, going to places you usually don’t, eating holiday foods instead of the usual, insisted-upon, hamburger or mac ‘n’ cheese? Many autistic children (my son included) are very picky eaters and a groaning board of unfamiliar foods is the last thing they wish to see, let alone eat.
(Charlie likes sprinkles but only multicolored ones and not on sugar cookies. If you offered him a home-cooked cookie like the one below, I suspect the answer would be a fast, decisive “no.”)
Photo by lorda
(2) Different Smells and Scents
Other things that many people love about the holidays — the scent of pine needles from trees and wreaths – can be precisely what makes this time of year extremely challenging for those on the autism spectrum.
Photo by drewsaunders
(3) Bright Flashing Lights Everywhere
Houses adorned with streams of multicolored twinkling lights and huge inflatable Santas, snowmen and a Rudolph or two: These can add up to an extreme “assault” on a sensitive sensory system. (Flashing and bright lights have sometimes seemed to stoke headaches in Charlie.)
Photo by the author
(4) I Love “Rudolph the Red-Nosed Reindeer” But Christmas Carols Can Be Cloying
Jangly songs about fa-la-la-ing and ho-ho-ho-ing playing everywhere can grate on anyone’s ears and nerves but the ubiquitous sounds of Christmas carols can be especially, intensely irritating for someone with sensory sensibilities.
Photo by ronnie44052
(5) Lots of Social Gatherings
Holiday parties, visits on visits with family friends and relatives, long hours in the backseat of the car or cramped into the window seat (in econo-class) in the reused air of an airplane, church services in packed pews where an out-of-sync child struggles mightily to sit quietly: It’s a lot of socializing for anyone and sometimes simply too much if you’re someone who struggles to interact socially and read social cues.
Photo by mac.rj
(6) Not Everyone Wants to Open Presents
Even something that most children warm right up to — opening presents — had to be taught to Charlie, who has always been one for liking the things he likes and having little regard for what he does not. As a toddler and up till today (as a lanky teenager), Charlie had no interest in finding out what was inside the beribboned boxes piled under the tree. We had to teach him to open presents only to see him so flummoxed about the contents that the ribbon and the crumpled wrapping paper interested him far more.
Photo by color line
(7) Holiday Travel
Our families celebrate Christmas and, when Charlie was younger, we strove to involve him in as many of the traditions and activities as possible. For many years, the three of us boarded a red-eye transcontinental flight to visit my family in California. We haven’t gone since 2008: While Charlie managed to get through the flight, he was completely disoriented to find himself in sunny, warmer northern California rather than cold and gray New Jersey. Even though he had visited the Bay Area yearly since he was a baby, he wanted only to get back home immediately and attempted to do by insisting on endlessly long walks, with the hope that maybe one day we’d just walk far enough and be back in Jersey.
Photo of Charlie preparing to board an airplane (the last one he’s since been on) in January of 2009 by the author
This past year has seen the publication of a great deal of research about autism, including a study that found a prevalence rate of 1 in 38 among children in South Korea and a study in Nature about the advantages of autism. While I’ve yet to find a scientific research study that answers our numerous questions and worries about Charlie’s challenges, such studies continue to enhance our understanding and attempts to help him navigate the world. To help encourage young scientists to focus on autism research, the Autism Science Foundation seeks to fund pre- and post-doctoral autism research fellowships via its Recipe4Hope campaign; your donation can help support the foundation’s goals.
I don’t know if we’ll ever figure out exactly why Charlie, the child of parents who love talking and language, can barely talk; about why Charlie is as he is. As we look forward to our 14th holiday season with Charlie, I do know that, thanks to the good work and the good will of so many individuals – teachers and therapists, doctors and medical professionals, family and friends who we rarely see but who cheer us on, neighbors and strangers whose names we don’t know but who take a moment to nod their quiet support — there’s a lot of hope out there.
Photo by davedehetre
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