When You Have Read One Story About Autism…
As a sibling to autism for more than 50 years, I have many true stories to share about life with this developmental difference—stories that you may not have encountered elsewhere. For instance:
One summer afternoon, a neighbor from the apartment complex in which my autistic adult brother and mother lived called the police about my brother. Fearing that his medication had fallen out of his pocket, my brother was visibly upset as he crawled around in the grass, searching for the bottle. I wasn’t there, but from past experience, I can well imagine his cries: a mixture of animal-like bellows, labored and erratic breathing, shouts of rage laced with profanities, and desperate pleas for God’s intervention.
Undoubtedly, he presented a disturbing spectacle to the pensioner peering from behind her curtained window. When a policeman arrived on the scene and began to question my brother, he stammered out a tearful, incoherent explanation about needing to be sure he hadn’t dropped his medication, all the while continuing his frenzied, obsessive search. Unable to make eye contact with my brother, the policeman then drew his gun and commanded “Freeze!” adding, “I have shot people for less!”
I don’t doubt that policeman had.
Which leads me to ask two morbidly curious questions: How many people with autism have been shot by the police for behaving in ways that are congruent with their diagnosis? Along this same line of thinking, I wonder, what percentage of the incarcerated population falls on the spectrum?
No one who knows or loves people with autism wants them to be shot or incarcerated because of their developmental difference. Similarly, those facing autism, personally or in their families, don’t want to read about real-life incidents like the one I describe above—they’re too disheartening.
Yet I know, firsthand, such stories exist. They are, however, largely absent from the contemporary media accounts that captivate popular attention.
Understand that I don’t want to condemn the media at large for the absence of these sorts of tales; in fact, I applaud the novelists, journalists, television and movie writers, directors and producers, and playwrights who have consciously chosen to shine a spotlight on autism. Because of their work, autism has gone prime time. Over the past decade or two, millions of people have become acquainted with endearing fictional and nonfictional characters on the spectrum.
In the US today, I would guess that more people than not feel they “know” autism: from their own experiences, through direct acquaintance with impacted neighbors, colleagues, family members, or via best-selling books, television dramas, Hollywood movies, or Broadway musicals that feature leading characters who are on the spectrum. I believe more awareness, acceptance, and advocacy may be some by-products of these mediated accounts, and from this, I am grateful for this sort of exposure to autism.
I have noted, however, that if you scratch the surface of the most familiar stories, you may note some remarkable similarities.
When autism advocate Dr. Stephen Shore states, “When you have met one person with autism, you have met one person with autism,” it seems that popular accounts are largely centered on one type of person with autism: those lucky enough to be born into advantaged circumstances.
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When I speak of advantaged circumstances, I am not thinking exclusively of wealth. (Although family money buys privilege. For example, in her break-out autobiography Emergence as well as her best-selling book, Thinking in Pictures, Temple Grandin speaks candidly of her struggles but also reveals her membership in a family of extensive financial means—one that could comfortably provide her with private tutors and boarding school.) We all realize that for families coping with special-needs children, having access to exclusive programs featuring specifically-tailored curriculums is a wonderful option—but a highly expensive one.
Advantage though is also derived from race and culture, family educational attainment, social support networks, and community connections. Examine many renown fictional and nonfictional autism accounts, and you will find combinations of these factors at play. For instance, John Elder Robison’s poignant and hilarious Look Me in the Eye (race, family education), Ron Fournier’s touching and poetic Love That Boy (race, economic wealth, social connection) and even the award-winning, long-running television series The Big Bang Theory (race, social support network, community connection) all shape contemporary expectations about living on the spectrum. Yet, these expectations are constructed on a bedrock of privileged circumstances. For those lacking economic, educational, racial or other social advantages, such narratives—while undeniably well-crafted and authenticate in tone—can read more like fairy tales than true stories.
We need uplifting stories to fuel us—believe me, I get this. In fact, the above-mentioned popular narratives I have found solace, satisfaction, and humor, and they have allowed me to continue in my hands-on, supportive role to my brother. Members of the autism support community want reassurance that we are not alone in our efforts to create places of understanding for our differently-abled loved ones. It is comforting to hear from others who share our journey, and those who are able to pick flower bouquets along the way renew and inspire us: when we are down, they encourage us to believe that tomorrow will be a better day.
But we also need to become acquainted with the stories of individuals who, due to family, cultural, racial, social or economic circumstances do not have positive, upbeat, and hilarious anecdotes about life with autism. Hard as they are to hear, we need to encounter stories of those who have suffered the trauma of bullying, beatings, arrest, and incarceration, or worse due to their developmental difference. Then we, as autism advocates, need to decide how to enact social change for all who live on the spectrum.
So I offer a corollary to the slogan, and it is this: When you have heard one story about autism, you have heard one story about autism—meaning, let us not have ears exclusively for the tales of the privileged few. Instead, let us actively seek out the stories of those who are battling not only prejudices against the differently-able, but also, racial, social, cultural, economic and educational hardship and inequality. These stories do exist, and we need to hear, and in turn, publicize them. To create a society in which all people on the spectrum are assured a place, we need to be literate in stories about autism—in all their variations. Not just the fairy tales.
This article was featured in Issue 84 – The Journey to Good Health and Well-Being