Living without a diagnosis |

Living without a diagnosis

Karina Wetherbee
Special to the Daily

In 2017, families of children diagnosed with autistic spectrum disorder have decades of research and countless tools at their disposal to help navigate the challenges that accompany raising a child with such a diagnosis. For adult individuals like Colorado’s own famed scientist, Temple Grandin or author and autism-awareness advocate, John Elder Robison, childhood was passed in a fog of doubt and misunderstandings, in an era well before autism was thoroughly identified and examined by the medical community, and certainly long before families had even the faintest idea how to cope with an autistic son or daughter.

Robison’s 2007 memoir, “Look Me In the Eye: My Life With Asperger’s,” paints a captivating picture of the reality of a life lived under that veil of awkward and often painful uncertainties. For much of Robison’s youth he was labeled a “sociopath,” and a “psycho,” which only fueled his tendency toward isolation. Sadly, much of the negative labeling came from within his very own family, which only served to isolate him even further.

Robison’s self-examination is unvarnished and candid, delivered with a dry sense of humor that does not diminish the profound impression of gratitude that he displays regarding his eventual diagnosis, which did not come until the age of 40, long after he had blundered through an upbringing that was trying and famously destructive. Robison’s younger brother, Augusten Burroughs, author of the wrenching memoir, “Running With Scissors,” pens the foreword to “Look Me In The Eye,” as it was his direct urgings that led to Robison’s eventual decision to write his own story.

Robison did so, with characteristic intensity, writing quickly and furiously, and the book, though cohesive and linear, nonetheless rambles through memories and reflective musings indicative of a man tasked with a mission.

“Look me in the eye” were dreaded words for Robison as he grew up, and he heard them often, though mostly, he acknowledges, he was only able to reciprocate with an unfeeling, shark-like gaze. Robison admits he always had trouble talking while also trying to be engaged with his eyes, though he still ponders why it was ever an issue. “I don’t really understand why it’s considered normal to stare at someone’s eyeballs.”

As his efforts to interact failed repeatedly while growing up, playtime with other children was often fraught with stress and conflict, as his need for order and patterns was not understood by his teachers or his peers. Preschool, needless to say, was not a pleasant experience. Ways of interacting that seemed natural to him were not acceptable for others. He was forced to learn to adapt, placing him forever outside the circle of normality, which he says was an isolating reality.

As he struggled through a life that he barely understood, the few friends he managed to keep were other “misfits” like himself … “runts of the litter.” Robison’s language about his own childhood struggles is heart-wrenching and despairingly sad. His story is a reminder that countless people existed in similarly glaring loneliness because a name had not yet been affixed to the actuality they were experiencing every day of their lives.

Not only did Robison struggle with his own demons, he and his brother bore the added pressure of an increasingly violent and dangerous father, and a mother who was slowly slipping away into the darkness of mental illness. “My memories of that time are like blinding flashes of harsh, actinic light. They hurt to recall.” But, in a way, he says he is grateful for his Asperger’s, because it protected him — as drawing inwardly was a natural tendency for him.

Robison tells of his remarkable journey into adulthood, and the ever-lurking presence of autism looming over his choices and capabilities. He chanced into music and electronics during high school, and he is convinced that those opportunities saved him. “My sadness at how other kids had treated me all my life had turned to anger. If I had not found electronics and music I might well have come to a bad end.” Instead, he found himself working the complicated sound systems for bands such as KISS and eventually working as part of the game design team at Milton Bradley that made the classic mimicry game, Simon™, that became all the rage in the 1980s.

In spite of his professional successes, his own personal challenges continued to make social interactions a daily struggle. Gaining the perspective that his eventual diagnosis provided, Robison felt as though a weight had been lifted. Learning that he had Aperger’s was not the burden one might expect … the years of living without the explanation and the tools to deal with it were what had dragged him down. Liberated, he now carries his Asperger’s with pride … “There is no cure, nor is there a need for one.”

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