Autistics Lay Claim to Ausome-ness | Development | Hudson Valley | Chronogram Magazine
Pin It

Autistics Lay Claim to Ausome-ness 

What is Normal, Anyway?

click to enlarge kids_puzzle.jpg

The Tyranny of Normal
When my son was two years old, he was big for his age, and actually looked like a small five-year-old. Like most toddlers, the gap between his needs and his ability to communicate them sometimes frustrated him enormously, and now and then we'd have a meltdown on our hands. The reactions of random strangers to an apparent five-year-old acting like a two-year-old were some of the nastiest stares I've ever seen; I found myself staring back and snapping, "He's two," in tones I've seldom used before or since.

What if he'd been 12 and the two-word response was "He's autistic"? Of all the things we have yet to learn about the autism spectrum and the human condition, one thing has been definitively and utterly disproven: Autism bears absolutely no relationship to bad parenting, nor to any parenting style in particular. Recent work in neuroscience, showcasing the genetic origin of so much of what happens in our brains, has finally cast a shadow over Bruno Bettelheim and his theory of the "refrigerator mother" as the source of autism. Yet many still react with judgment or pity in the presence of a child acting in ways other than Normal.

This armchair parenting is something we collectively need to get better about. One in 88 is now the conservative estimate of how many kids fall somewhere on the spectrum, a diagnostic constellation of widely varied sensory and social differences that often make it a much bigger challenge for parents to help kids bridge that gap between their needs and the ability to get them met. Autistic brains are different in ways we are barely beginning to understand, and in the first few years, when it is culturally mandated that young humans will master certain societal norms like toileting and talking, many autistic kids seem to be working on another agenda, developing narrowly focused interests that may make sense only to them. Some of these interests may never provide anything but individual pleasure; others lead to doctorates and Nobel prize nominations.

Beyond Awareness to Acceptance
Half a million people with those differences will be coming of age over the next decade, into a world where eye contact is considered a measure of character, social facility is worshipped, and behaving in ways that are markedly and unquestionably Not Normal can get you ostracized, bullied, or worse. Of the many forms of discrimination, ableism is one of the most pernicious and tenacious. And there is something autistic adults would like us all to know: The framing of autism as an "epidemic," the awareness ads featuring adorable children dematerializing out of strollers and ceasing to exist, and the focus of researchers on finding a "cure" are offensive at best, and many consider them part and parcel of the mindset that has led, in extreme cases, to autistic kids being confined in cages "for their own good" by overwhelmed caregivers.

"Autism is an integral part of me. You cannot separate autism and Sarah; if you did, I would not be the same person—I would be less," says Sarah Grace Adams, a mother of three and founder of Autism Empire, a not-for-profit website dedicated to "celebrating neurodiversity." Adams continues, "There needs to be a balance between behavioral adjustment so that people can function in a neurotypical world and acceptance of the autistic individual."

"We need to step back and start listening," says Wendy Kuhlar, who teaches spectrum kids between the ages of six and 10 at Abilities First in Poughkeepsie. "People will try to force an autistic person to make eye contact because they've defined it as an issue. What if that person doesn't want eye contact? Why the need to squelch every little ritual? Is it anyone's business to insist that these very sensitive beings have to change who they are?"

Building New Bridges
The generally accepted treatment for autism is called Applied Behavioral Analysis, essentially a form of behavior modification, which many autistics say can be useful or damaging depending on how it is applied. Being subjected to negative stimuli to quell behaviors considered "too autistic" is frustrating and scary to a child who finds these behaviors—flapping hands or spinning, say—a deep source of comfort. Kuhlar prefers the TEACCH (Teaching, Expanding, Appreciating, Collaborating and Cooperating, Holistic) methods she learned in training at the University of North Carolina, using the stated principles to detox students who've been put through the wringer of "negative reinforcement." Kuhlar says, "I had a kid join the class recently who was extremely violent—just to staff, which is something I've observed more than once. A child can be acting out toward staff and very careful not to hurt the fragile kid right next to them. It's not random; it's self-protective. I started mirroring what he did. He'd make a face, I'd make the same face. We started there, and it took a few weeks, but he's participating in class now." To reach these children, Kuhlar believes, it is essential to begin the conversation in their own language, which often isn't verbal.

"Autism is best understood not as a dreaded disease, but as a mode of being," says Dr. Dan Edmunds, who's worked with many spectrum kids in his Kingston, Pennsylvania, practice. "What we should be doing is supporting and assisting these people in being able to navigate the mainstream. Aversive behavioral therapy—devising various means of force and coercion to make them something other than what they are—is terrible, although a natural outgrowth of the conformist mind-set. There's an insistence that they must enter our world. Well, I must first enter theirs before I can show them anything of mine."

No one, on or off the spectrum, is suggesting that autistics don't need help to deal with a world arranged by and for non-autistics. Early intervention done right is crucial, and autistic individuals and families need more support than they get. "A small difference in services can make a huge difference in quality of life," says Jamey Wolff, executive director of the Center for Spectrum Services, which has been serving ASD-diagnosed individuals since the 1980s. "Even some of our kids who've been successful in college need help navigating the complex worlds of employment and social life, and it's a great investment to give it to them."

Carly Fleischmann, diagnosed at two years old as severely autistic and unlikely to ever communicate, found her voice at 10 and typed "HELP TEETH HURT." Her parents took her to a dentist. Now she's taking gifted classes at a mainstream high school. She makes unusual sounds, flaps her hands, and has published a memoir. As front-line workers like Kuhlar, Edmunds, and Wolff and legions of loving parents get better at building bridges, we may discover that these children with a different agenda bring an "Ausome" gift: the final stake through the heart of the soul-sucking concept Normal.

Pin It


Showing 1-1 of 1

Add a comment

Subscribe to this thread:
Showing 1-1 of 1

Add a comment

Hudson Valley Events

submit event
Sullivan county NY fall foliage day trip ideas in upstate New York - Free Tours Families & Pets Welcome @ Kadampa Meditation Center New York

Sullivan county NY fall foliage day trip ideas in upstate New York - Free Tours Families & Pets Welcome

Sept. 26-Nov. 30, 11:30 a.m.-4 p.m. — Looking for Sullivan county NY fall foliage day trip ideas in upstate...

View all of today's events

Chronogram on Instagram

Latest in Kids & Family