It started on Comedy Central’s “Night of Too Many Stars,” Meredith Vieira ramped it up with Willie Geist, Regis Philbin did it with Hoda Kotb, Matt Lauer did it with Kathie Lee Gifford, Jimmy Kimmel and Rhianna just did it… any question that The Twizzler Challenge is the Ice Bucket Challenge for autism has been quickly answered — T’is!
But while celebrities have embraced it, a noticeable absence has been the participation of people like myself, who are diagnosed along the autism spectrum. Why?
Before I go any further, one giant disclaimer… I’m on the board of directors of the non-profit that the money raised will go to, New York Collaborates for Autism(NYC4A). But before you grind your reading to a halt, understand that ALL the money raised will be then disseminated towards innovative services — not NYC4A, not research, not politics. Despite our fractured autism universe, no one disagrees that services need improvement. Even if, based on your side of the fence, you can never support Autism Speaks, the Autistic Self-Advocacy Network (ASAN), Jenny McCarthy, or the Centers for Disease Control (CDC)… no ambivalence towards this opportunity to guiltlessly eat candy can originate in the absurdest notion that the cause isn’t worth it.
But for us spectrum-folk, “challenge,” is the right word, as too often we feel pushed by the greater majority to participate in something we may not feel a connection towards. Logic takes over, we ask “Why?” and more often than not, the answer of “Because it’s fun” does not satisfy.
For some it may not even be fun. If we have sensory issues over cold sensations, the Ice Bucket Challenge is out. If we’re not comfortable being so close to another, then Twizzlers ain’t happening.
For most of us, though, the detachment is both emotional and cerebral.
A good example of this developmental/assimilative struggle is “the wave” at baseball stadiums. For those of us who haven’t yet become cognitively aware of the social ostracization that too often exists for us, we might enjoy the wave as a successful demonstration of our ability to follow, and execute, an action to the same degree of efficiency as everybody else. In those examples, we might even finish the enterprise feeling proud, excited, and somewhat equal with our world.
But when folks are of another place on the spectrum, and have gone through accumulated negative experiences with the greater majority, there comes perhaps a need to embrace the separation, and maybe even, as a means of self-preservation, to consider ourselves superior, or above such an action as the wave. As the famous counter-spy Kim Philby once said “You can’t be a traitor if you never belonged.”
This is simply how Social Darwinism works, not just autism. Rather than assume that everyone else is right, and that the wave has intensive meaning that we as second-rate humans will never attain, the wave is instead chosen to be meaningless, even “dumb,” and this protects us. So when the wave reaches our section, we bristle, feeling unfairly pressured, probably don’t participate, stew about it for a while (failing to enjoy the next inning or so), and become cultural snobs. While the protective impulse is justified, it is not a positive, but the lesser of two evils. We still lose out, especially if observers see the regrettable bitterness. Granted, I still bristle at the wave, and I know that such phenomena will never be instinctively attractive to my system of logic. But based on the world we live in, I now do the wave happily — opinions notwithstanding — because my boys like it, and because I long ago learned that whatever pressure I once felt was unintended.
My turnaround towards making peace with, and then enjoying, “the populists’ strange mannerisms” was gradual, but I remember my final lesson like it was yesterday: I was in a radio booth in 2007 when my wife telephoned me from our apartment where she was watching TV. Like many an intelligent woman, Kathryn paradoxically retains an addiction for reality shows, and her current drug at the time was “America’s Next Top Model,” a show where 15 or so aspiring fashion models get systematically eliminated before one wins a major modeling contract.
“You may not like this…”
Knowing that tone of hers, and bracing myself, I said, “Okay. Let’s hear it…”
“‘Top Model’ has a girl with Asperger’s on for this season.”
My heart sank. The least favorite task I had as the then-executive director of GRASP was the whole “media watchdog” thing. But it was my job. You had to complain about negative spectrum portrayals (and back then there were a gazillion of them) in news segments or fictionalized shows in order to protect your constituency and respect their legitimate outrage. But this part of the job is a giant time-suck of precious administrative hours, and since no one donates money to your non-profit because you complain about TV shows, your org really gets nothing for its time. You could argue the bad guys always win, even if in the end some TV producer apologizes.
Now? “Freaking fashion models” were in charge of our image? Yes, I may have even used the word “dumb,” and I truly apologize to fashion models for that.
Cut to the chase: Not only did the producers handle the situation better than any media others up to that point, and not only was the contestant, Heather Kuzmich, an honest, challenged-but-strong, positive example of a young woman with Asperger’s, but the good that show did for other young girls with Asperger’s blew me away. Kuzmich made them feel as though they belonged and reminded me that inclusion involves all of our cultural opportunities, not just the highbrow stuff. Kuzmich made so many girls trust the world more, was the “viewer favorite” for eight weeks in a row, and made it to the top five before she was eliminated. I, especially, was heartbroken and proud when her run had ended.
The populists had taught me something I was long overdue in learning. By interpreting the “trendy” to carry potential, even when it involves a task that instinctively might feel demeaning, we too often, by participating, discover the opposite of our fears: that it can be fun, it might make us giggle a little (because we know there’s something silly about it), it builds trust — ending the suspicion that we have to protect ourselves at all times; and in the end, the sacrifice feels liberating; both a breath of fresh air, and a stepping-stone to that mutually-respectful society most of us want. Yes, the world needs to respect our spectrum differences more so than they presently do. But as that improves (and it steadily is) so too do we have to reciprocate.
Since then I have bagged my solo fitness exercises to join my wife in DVDs — dealing with the onscreen cheerleading rituals that once drove me out of my skull (although “Shaun T” has achieved godlike status for me), I give my boys’ pop music a chance, and I too, when challenged by a fellow hockey dad, did the Ice Bucket Challenge. What once reeked of regression has been shown to contain growth.
We really don’t sacrifice our standards by taking a little break from them. So I am going to eat some candy. The cause is without question.
And in another spirit, I challenge fellow spectrumite authors Liane Holliday Willey and Brian R. King.
Some fads just rock.
Want to get involved?
1. DO IT
Participate in the #TwizzlerChallenge by filming yourself and another participant taking the challenge.
Donate to NYCA at twizzlerchallenge.org and help fund autism programs, schools and services nationwide that help those living with autism right now.
Dedicate your challenge.
Someone You Know Loves Someone with Autism
About Michael John Carley
Michael John Carley is the Founder of GRASP, a School Consultant, and the author of “Asperger’s From the Inside-Out” (Penguin/Perigee), “The Last Memoir of Asperger Syndrome” (TBD), and numerous articles. He is also at work on “Unemployed on the Autism Spectrum,” and “‘Why Am I Afraid of Sex?’ Building Sexual Confidence in the Autism Spectrum…and Beyond” (both Jessica Kingsley Publishers, due 2016). In 2000, he and one of his two sons were diagnosed with Asperger’s Syndrome. More information can be found at www.michaeljohncarley.com and you can Follow him on Twitter.