When New York Times reporter Amy Harmon decided to write a series about the record number of autistics now entering young adulthood, she wanted to show the obstacles they face. So she wrote about a capable but socially challenged young man’s struggles finding work and friendship. But then Harmon realized there was something more difficult she needed to tackle: romance.
“I think if the goal is for individuals on the spectrum to achieve full, independent lives,” she says, “then romantic partners have got to be a part of that. But the whole idea of intimacy is often shelved because it seems so complicated, or because even parents, teachers, counselors assume that it’s not possible or desirable.”
Autistic kids have trouble reading social signals, and are often assumed to be disinterested in intimacy. “Yet clearly,” Harmon says, “young adults on the spectrum are looking for it, and yearning for it, and could benefit from tools or models or just a deeper understanding on the part of prospective partners about what the challenges are to achieving it.”
Challenges to romance
Her resulting December, 2011, piece, “Navigating Love and Autism,” focused on the romantic trials and triumphs of Kirsten E Lindsmith and Jack Robison, then 18 and 19, respectively. Both Lindsmith and Robison are diagnosed with Asperger’s disorder; their neurological differences make it harder for them to read each other’s facial expressions and body language, share feelings, and overcome intense obsessions and rigidity.
Add to that their sensory challenges: Robison dislikes kissing (he told Lindsmith it felt like “mashing your face against someone else’s”) and holding hands (too sweaty). Meanwhile, while Lindsmith enjoys deep pressure massage, Robison wants to be touched lightly.
The feedback to the story was “intense,” Harmon says, and that led her to expand the article into a new e-book, Asperger Love: Searching for Romance When You’re Not Wired to Connect. “The book is meant to debunk what I think is the deepest misconception about people on the autism spectrum, that they have no capacity or desire for emotional connection,” she says. “I hoped that by writing what is essentially a love story, readers would be drawn in and come to understand the falseness of that notion, more so than they would if I quoted experts and cited studies.”
Negotiating for what you need
But it’s her author’s note that truly sets the book apart from the article. There, she reveals that she’d aimed to write about young adults on the spectrum to encourage others to help them. “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 something unexpected happened along the way. As she “sought to portray the oddness of my autistic subjects,” she writes, “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.”
Harmon’s e-book opens a window into the lives of an autistic couple trying to negotiate to get what they need from the other. Anyone who has been in a relationship past the infatuation stage, who has struggled with issues of control and independence, will relate to their intense argument over the best way to prepare cauliflower. But then there are the negotiations Lindsmith must conduct to get more of what she needs from Robison:
She tolerated his discomfort with public displays of affection, though she pushed for more in private. When he explained that his lack of expression did not mean a lack of warmth for her—he often simply forgot—she devised a straightforward strategy to help him.
“When I put my hand on your leg,’” she said, “you put your arm on my back.”
Expressing desires explicitly
The real threat to their union, Harmon writes, was when disagreements escalated so badly that the pair couldn’t understand or comfort the other. For instance, Lindsmith had told Robison that when she was upset, she wanted ” ‘to be held and rocked and comforted.’ But Jack had always had trouble knowing how to act when anyone cried.”
“As I witnessed Jack and Kirsten’s struggle to explain themselves to each other,” Harmon writes, “I couldn’t help but wonder: Are the emotional truths underlying social exchanges really better left unspoken?”
She comes to realize that what makes relationships involving autistics work—expressing one’s desires explicitly, learning to be mindful of the other person’s needs—can help everyone, on and off the spectrum. “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?” she writes. “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?”
As Harmon reflects on her own life, she realizes how much she’s learned from Kirsten, Jack and others on the spectrum. “The more I observed autistic behavior, the more my own was reflected back at me in a light not available elsewhere,” she wrote.”Once I started noticing the code, it seemed to beg for deconstruction … I vowed to be more direct.”
A wide range of disability
With an estimated 1 in 88 children now being diagnosed on the spectrum, Harmon notes the struggle of writing about autism when there’s such a wide range of disability. She acknowledges that her stories on work, friendship and romance are slanted toward those with a diagnosis of Asperger’s disorder.
The Pulitzer Prize winner spent about three months following Lindsmith and Robison, observing and interviewing them, along with their friends and family members, including Jack’s dad, John Elder Robison. As it so happens, Harmon’s release coincides with John Robison’s latest book, Raising Cubby: A Father and Son’s Adventures with Asperger’s, Trains, Tractors, and High Explosives, Cubby being John’s childhood nickname for Jack. The book ends just before Jack and Kirsten’s relationship starts.
In Cubby, John Robison, who was diagnosed with Asperger’s at 39, admits that he was “too shy” to talk to Jack about love, let alone sex. “Whenever I thought about Cubby and sex, I recalled my own teen years, when my social disabilities kept me clear of sexual entanglements more effectively than any conversation could have,” he writes. But he did tell his son about the autistic men and women who lingered after his speaking engagements to share their relationship woes and the resulting sadness and loneliness.
Happily, that isn’t the case for Lindsmith and Robison, who remain together. Lindsmith has begun writing a weekly blog for prominent Aspie advocate Alex Plank’s WrongPlanet and Robison is working for Plank’s Autism Talk TV. As for marriage, Harmon says the subject has come up but “I don’t think they’re in a hurry for that.” Meanwhile, “they both tell me that Jack has been known to be more spontaneously affectionate when they are alone together, and that Kirsten is having fewer meltdowns.”
At a time when parents are worrying about their autistic children’s future personal and professional happiness and young adult Aspies seek love and relationship advice on online forums, Harmon’s book offers proof that light—and love—is possible at the end of the tunnel.