July 2008 – A Not So "Savage" Response
Hello Spectrum Families and Friends!
Well, this week the fire was turned up on the already boiling pot of Autism Spectrum misunderstandings by radio personality and conservative talk show host Michael Savage. His "savage" attack on Autism as well as other minorities set blogs ablaze and is attracting much attention in the media, throwing cinders everywhere. I remember similar insensitive comments 10 years ago about ADD and ADHD by other so called "popular personalities." So, what has been stirred here? For those living with Autism, there is the insult in the suggestion that they can just work it out, but just choose not to, since they are out of control brats. For the caregivers, there is insult in suggestion that we do not know how to handle these bratty kids and are just bad parents. Dad just needs to get stronger and tell the "moron" to behave.
If I were to use my non-qualified psychobabble to analyze Michael Savage I would say he is sadly projecting - venting his own fears of being an idiot and out of control; his fears of being incompetent; his need for love and acceptance misdirected by rants, screaming with "look at me" attention.
Setting this aside and excusing him for his misinformed behavior, it appears what has been stirred is even greater than what is written above - a realization so big that it is almost a revelation dawning across the entire nation. Just a few years ago his comments might have gone unnoticed by most, since Autism was barely on the back burner of popular discussion. Today, due to the diligence of parents, grandparents, case workers, teachers, and self advocating Autistic persons, so much more is known about Autism. Since 2005, there have been thousands of new programs, outreaches, supports, education and research created to assist this mysterious condition. Public service advertisements and news specials exploded this past April - and yes, it is amazing how many people today know at least the word Autism and maybe some small fact. Given the rate of diagnosis, it is amazing how many people know a family dealing with Autism.
Many times, what one intends for bad, with spirit, it can be redeemed. The redeeming factor given the savage attack is that people across the nation are seeing it as just that, savage. Here is the trick though. How does it makes us feel? How do we respond? And the answer can vary if Autism personally affects you or not. Yet, a good sign has emerged - there is a surge for more awareness, more understanding, more support in society, more common decency as we live to together in community. Is it a savage society we desire? Or is it a peaceful, creative, resourceful, loving, accepting society we desire? What paradigms must shift to attain the latter?
An intriguing response by an adult Autistic, William Stillman, is below. He is an eloquent writer and amazing advocate. Please read and ponder.
Ultimately, we must strive for the heart felt solutions to change the hearts and minds of those lost in their world of fear and misconceptions.
Robin V Schwoyer
HeARTs for Autism, Director
Autism: A New Cultural Competency
William Stillman is a nationally recognized autism self-advocate, speaker, and author of numerous special needs parenting books. He has advocated for persons with different ways of being since 1987, and serves on several advisory boards including Autism National Committee. He also writes columns for The Autism Perspective and Children of the New Earth magazines. In his work, Stillman seeks to passionately transform perceptions of autism from those defined as "afflicted sufferers" to those with valuable gifts to offer the world. His Web site is www.williamstillman.com.
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, in recent weeks, 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 conflict in neurodiversity, a lack of autism cultural competency, at the root of such incidents. This culminated perhaps most succinctly 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 neuro-typical or average persons 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 ballistics; 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 neuro-typical 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 childs 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 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.'
© 2008, William Stillman
Source: Basil and Spice