In Their Own Words: Asperger Love
This is an excerpt from Pulitzer Prize-winning reporter Amy Harmon's new e-book, Asperger Love published by the New York Times and Byliner. It is currently available at the Kindle Store on Amazon, among other e-book stores along with Nook and Ipad. Amy was recently highlighted on Autism Speaks for her NY Times Article “Navigating Love and Autism”. Temple Grandin calls Amy’s book, "required reading for couples, parents, teachers and counselors,'' Harmon portrays the challenges and successes of one young couple, both on the spectrum, and their struggle to make a romantic relationship work.
The ride to the airport was my best chance to witness Jack Robison putting his hand on Kirsten Lindsmith’s leg. I had been following the young couple for weeks, tracking their struggle to forge intimacy in the face of the autism diagnosis they shared.
I knew they could find my presence exhausting, so I invoked a favorite journalism trope to get them to let me come along: “I just want to be like a fly on the wall.” I believed it, the idea that a reporter could fade into the background, observing events without changing them. I had gathered plenty of examples of Jack and Kirsten’s missed connections; now I wanted to capture a rare gesture of physical affection, one that most often occurred, they had informed me, in the car.
To divulge my motive would have violated the fly gestalt, of course. I simply sought permission to sit in the backseat. They wouldn’t have to perform for me or answer questions, I promised. They could forget I was there. All of the journalism giants I presumed to model myself after had championed this approach. Previous story subjects of mine had been persuaded to embrace it. But in Jack’s literal, logical, autistic view, the metaphor contained a flaw that could only be described as fatal. “The problem is,” he said, not unkindly, “you’re not a fly.”
* * *
When I set out to write about young adults with autism, I harbored a certain missionary zeal. The growth in the diagnosis of children with the condition had been well chronicled; not so the experience of entering adulthood with its hallmark deficits in social interaction— the currency of pretty much all of modern life. I hoped that by portraying the difficulties autistic young adults face in making their way in the world, readers might be moved to help them fit in. The prism of romance, especially, I hoped would be poignant. But as I sought to portray the oddness of my autistic subjects, I found that they were altering my view of what passes for normal. Time and again they exposed my own pretensions and highlighted the absurdity of the social mores to which so many of us subscribe. These revelations were often jarring, sometimes funny, always instructive. The more I observed autistic behavior, the more my own was reflected back at me in a light not available elsewhere. I don’t know why our social interactions have evolved to be so telegraphic.
But once I started noticing the code, it seemed to beg for deconstruction. When Kirsten and Jack told me how tiring it is to interpret the hidden messages in conversations, for instance, I vowed to be more direct. Rather than look away or otherwise hint at boredom with their frequent monologues about quadrocopters, chemistry, Eve Online (Jack), dog biology, forensics, and My Little Pony (Kirsten), I broke in and changed the subject to my own preoccupation: their romantic life.
Perhaps it is because reporters have to ignore social rules to do our job anyway that I took so quickly to dispensing with them. We already ask rude questions, stand too close, ignore signals to change the
subject. But as I witnessed Jack and Kirsten’s struggle to explain themselves to each other, I couldn’t help but wonder: are the emotional truths underlying social exchanges really better left unspoken? Are the reasons people are happy or sad really so obvious to the rest of us that we don’t need to spell them out? Could it not actually benefit all of us if prospective dates, or friends, or employers, devised explicit signals for individuals with autism, as Kirsten and Jack did for each other: “If I touch your leg, that means I want you to put your arm around me”?
The magnitude of the challenge for people with autism is embodied in the potentially catastrophic results of a million small miscues. Yet even for those of us fluent in secret social signals, so much of it is guesswork, and so many guesses are wrong.
Which may be why, on a cold day in November, I scrunched up amid the detritus in Jack and Kirsten’s backseat and waited three long hours for Jack’s spontaneous sign of affection toward Kirsten in the front. That they had let me come along, I thought, was a sign I had won their trust. But when, in the spirit of frank disclosure, I voiced my disappointment as the ride concluded, they turned to me with pitying expressions. “He would never have done that with you in the car,” Kirsten told me. O.K., Jack and Kirsten, so I’m not a fly. A reporter’s presence changes her stories, and she, in turn, is changed by them. The only question left, then, is what happens to the reader.