A Subarctic Autism Awareness Day Analogy
I am weary of Emily Perl Kingsley's essay Welcome to Holland -- which likens a child's special needs diagnosis to being rerouted to Holland after embarking on a long-awaited trip to Italy -- being passed to parents by well-meaning pediatricians or social workers as the cherry atop stacks of life-changing autism diagnosis paperwork. Welcome to Holland, with its gentle visions of tulip fields, is a beautiful piece of writing, but it was written for parents of children with Down syndrome. It doesn't speak to my family's experience with autism, and I'm not the first to say so. For Autism Awareness Day, I'd like to propose a new and more appropriate geographic autism analogy:
Welcome to Yellowknife!
Receiving a child's autism diagnosis is like living in the world's most wonderful city, San Francisco, then being suddenly informed of your family's relocation to Yellowknife, a busy city in Canada's subarctic. Even parents who know only that the subarctic is where the globe turns from green to white are aware it's not a place one lives casually. If you're going to survive the long, dark, fierce winters and bug-ridden summers, you have to be prepared. You have to budget for expensive supplies and services that people in San Francisco never need consider. Yellowknife is also remote -- you may find that not all of your former families and friends are able to visit you there.
Living in Yellowknife can be exhilarating, it can by trying, it can be depressing, and it may just fill your soul with light. Accepting that your child is going to be raised in Yellowknife is not easy, but it's the first step to being the parent your child needs -- because you're going to have to step up. Though parents love their children as much in Yellowknife as they do anywhere else, life in Yellowknife is challenging. To keep your children not just safe but thriving requires effort and vigilance and consistency. Children need extreme bundling for winter, and hardcore bug evasion gear for summer. Frostbite lurks just outside your door during the twenty-hour-long winter nights. The seasonal rhythms are balanced by twenty hour summer days -- which makes perfect sense to your child, but may never make sense to you, or your child's siblings.
But, once you've settled in, you start to realize how cool Yellowknife can be. You start to see that Yellowknife is a crucible for the intrepid and the fearless, for people like the Ice Road Truckers who brave long and grueling journeys to provide subarctic children with the supplies and services they need. You find that, as in San Francisco, people come to Yellowknife from all over the world. You'll also find that not all of them will be staying.
Some people leave Yellowknife because they not only embrace their subarctic identity, but have no intention of living any place else -- so they founded their own semi-autonomous territory, Nunavut. Though they maintain government ties, they self-govern and live as they please with minimal outside interference. They also have long memories -- they remember the not-too-distant days of being treated like second-class citizens on their own turf. They do not appreciate being patronized or stereotyped, even about some members' special talents for art or communicating with animals.
Some subarctic residents don't cotton to life in Yellowknife or Canada - in fact, they reject it. They claim their children were forcibly dragged out of California, and so want to redefine subarctic living as an American condition. They bide their time in Alaska, where their resentments are kept simmering by an outspoken, glossy, self-professed maverick woman who thrives on promoting her controversial books, flogging conspiracy theories, and claiming that her experience as a mom gives her opinions more weight than those of professionals and experts. She does little positive work for the subarctic community as a whole. Many Alaskans-by-choice aren't pleased to be associated with her, and would rather she focused on issues that unite rather than divide the subarctic.
Some Yellowknife families discover that they're more comfortable closer to, though not across, the U.S. border. They move to cities like Vancouver, and Toronto, where they meet plenty of children who are like their kids, some of whom have been raised there, some from resident families of multiple generations. Vancouver and Toronto kids are often mistaken for Americans to those unfamiliar with their subtle Canadian variations in speech patterns, and compulsive apologizing. Since these kids can "pass," adults are not alway understanding when kids who appear old enough to know better throw tantrums upon encountering packaging that isn't in both English AND French BECAUSE THAT IS HOW IT IS SUPPOSED TO BE.
Some families do eventually move back to California, usually through a combination of luck and hard work -- but they rarely make it all the way back to San Francisco. Most end up in towns like Crescent City, where the rainy days outnumber the sunny, and the average August temperature never breaks 70F. The parents' priorities have often changed dramatically due to their Yellowknife days; most could care less about San Francisco by this point -- they're just happy to be back in the Golden State, and happy that their child is happy.
Some people take their Yellowknife kids to the United States as often as they can, to see if they can tolerate their parents' social and cultural space. Sometimes, this is fine. Other times, the kids freak, and it's totally understandable. The kids are used to different stars, to daylight that lasts for weeks, to glorious northern lights. How could they possibly adjust to twenty-four hour light cycles and lifeless skies, without our help? Those transitions don't come naturally to them. So we find ways to help them practice our patterns, to adjust to being comfortable with visiting our United States, even though we know they will always return to Yellowknife.
Not all Yellowknife families are successes, even by Yellowknife standards -- they don't have the support, the funds, the community, the know-how, or the right personality. Other families decide, after doing their utmost to acclimate, that while their kids belong in Yellowknife, they do not. It can endanger an entire family when a child is constantly chasing after the music of the Aurora Borealis, or the calls of beluga whales -- and keeps trying to escape, to dance under the shifting lights, to swim with their little white whale on the go friends -- and is not able to stop using force to pursue their goals. Parents who choose to leave their kids in Yellowknife do so not because they don't love their kids, but because their kids' needs exceed their parents' capacity to take care of them safely, in the manner the child both needs and deserves.
But many families, like mine, will remain here in Yellowknife, intact. Even the most content among us would sometimes rather live anywhere else, somewhere we don't have to crawl under our house with a blow torch to unfreeze our water pipes when then temperature drops to 50 degrees below zero, where we don't then throw our phone at the wall in disgust after calling family in California to hear a sympathetic voice, only to be told that they can't talk because they're whooping it up in the outdoor hot tub even though it's December. But you know what? We have snowmobiling and midnight sun. We are part of an active, vocal, watchful, loving community, filled with people we never would have met had we stayed in San Francisco. We have awesome year-round recreation centers where we can teach our kids curling. We have a government that really wants to support our kids even if they don't always know how. We have learned how to live here.
So, now that you have a sense of the autism spectrum's complexity, what should you DO with this information? I'd ask that you digest it, then spread it around to people who could use a dose of autism education. And I'd ask that, instead of settling for mere autism awareness, you take action. Here are some suggestions:
Give quirky kids the benefit of the doubt if you spy them acting oddly.
Reach out to autism families, ask if you can help them in any way, make their possible needs a higher priority than your fear of rejection.
Push for Useful Autism Books at Your Library:
- Gravity Pulls You In: Perspectives on Parenting Children on the Autism Spectrum, eds. Kyra Anderson and Vicki Forman
- My Baby Rides the Short Bus, eds. Yantra Bertelli, Jen Silverman, and Sarah Talbot
Adults With Autism
Advice and Approaches
Promote movies in which people with autism are more than just catalysts for the neurotypical characters' self-discovery arcs:
Actively support pending legislation to improve the lives of people with autism and all people with special needs:
- The ABLE Act allows families of people with special needs to set up 529-like funds for their future needs
- Fully funding IDEA the government promised, but did not fully allot the funds for, special education
- Restraint and Seclusion Act no child should be restrained and secluded, especially not our kids
Shannon Des Roches Rosa perseverates about not having Canadian citizenship like her two older brothers on both Twitter and her personal site www.squidalicious.com (where she also writes about parenting and autism). Though she has never actually been to Yellowknife, it is not for lack of trying.