THE BLOG

Autism: A New Cultural Competency

02/11/2014 01:21 pm ET | Updated Apr 13, 2014

As an adult on the autism spectrum, it is with frustrating frequency that I grapple with the misunderstanding and misinterpretation of my words and deeds; some, it seems, always rush to judgment and presume the worst in me when the exact opposite is true: I usually act out of consideration and selflessness in deference of others. It is this near-daily confluence (or clash) of ideals that can be absolutely maddening to me. And because of my forthrightness, it is a similar mindset that spurs my inability to reconcile disingenuous, duplicitous or deceptive behavior in others. I say what I mean, and mean what I say -- shouldn't everyone do the same?

So when I've seen national news stories about children with autism being excluded from church, removed from airplanes, and kicked out of restaurants for "autistic behavior," I presume not the worst, but a conflict in neurodiversity, a lack of autism cultural competency, at the root of such incidents. This culminated perhaps most succinctly a few years ago when it was brought to my attention that a radio talk show host referred to autism as a hoax, a fraudulent excuse for bad parenting, and concluded that children with autism are "brats" and "idiots."

You can only know what you know -- until you know better, or differently. And ignorance need not hold negative connotations if one endeavors a greater appreciation and respect. Autism is oftentimes an invisible disability, meaning, many of us get by, blend, and "pass" for normal because there's nothing particularly telling about our outward appearance at first glance. It is obvious when someone is physically compromised because they are blind, deaf, or use a wheelchair -- it's visible and tangible, and, in observation, we are more likely to make compassionate accommodations. So when a child melts down in the middle of the mall, screaming and thrashing, it may not be unreasonable that the average layperson leap to conclusions not unlike the radio talk show host.

Here's where autism cultural competency comes into play. A grossly overlooked and disregarded nuance of the autistic experience is the acute, overwhelming, and oftentimes painful sensory sensitivities experienced by the vast majority of autistics. For example, I filter out nothing and absorb everything around me, just like a sponge. There's very little that escapes my attention, from the distant cries of an uncomfortable infant to the whirring of an overhead ventilation system to the sudden shock of a nearby stranger's cell phone setting off. It can be exhausting to endure. Most "neurotypical" or average people automatically and naturally discard such superfluous sensory information and are unbothered by it. However, I can appreciate how the autistic child could overreact to a shrill church choir or pipe-organ ballastics; the blaring aircraft intercom that makes you want to jump out of your skin, though you must remain restrained in your seat; or the cacophony of voices, clattering cutlery, and swell of food aromas in a neighborhood restaurant.

The obvious response to such sensory sensitivities to is compel someone, through myriad means (like force), to be less sensitive; to "snap out of it" and conjoin with the real world. My reply is to suggest, "What do you think I'm doing every time I step outside my front door?" The world hurts. Yet I don't want to be less sensitive than I am. It serves me in my work as a consultant specializing in interpreting autistic hieroglyphics. Whereas neurotypical professionals require hours of data collection, assessments, and observation time, I need ten minutes or less in the presence of the autistic one to know precisely how to counsel his parents and educators in autism cultural competency; that is, fostering an appreciation for the autistic experience from the inside out. Oftentimes, I can intuit this information simply from looking at the child's photograph--now that's sensitive. My intuition never fails me. And I wouldn't want it weaned out of me either. It has value and purpose.

Understanding autism cultural competency includes making compassionate accommodations when and where possible in consideration of someone's sensory sensitivities. This requires not only awareness but compromise. I know of parents who insist that their children with autism go to Disney World though each child clearly protests while there -- further stigmatizing others' perceptions of the autistic "brat" when, in fact, the so-called behavior is clearly communicating, "I'm in pain and don't want to be here!"

I encourage parents, instead, to focus on prevention instead of intervention; partnering with their children well in advance of an activity or an environment to equip the very sensitive one with strategies, techniques, and devices to pull it off and get through it as successfully as possible, averting the assaultive irritants that conspire their undoing. And I implore the average onlooker not to jump to hasty and judgmental conclusions but to believe that we all have good reasons for doing what we're doing, and we all are doing the very best we know how to on the spot and in the moment -- even the child who outwardly appears to be the product of "bad parenting."

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