The New York Times’s incredible piece on the lives and loves of two adults with Aspergers

On Monday, The New York Times featured the second installment in “Autism, Grown Up,” an ongoing series by Pulitzer Prize-winning science writer Amy Harmon. The 5,113-word, front-page story, titled “Navigating Love and Autism,” chronicles the courtship and romance of 21-year-old Jack Robison and 20-year-old Kirsten Lindsmith, both of whom have been diagnosed (and self-identify) as having Asperger syndrome.

Kirsten Lindsmith and Jack Robison

It is an incredibly intimate piece of journalism. The story begins with a description of a  night in the fall of 2009 — “the first night they slept together entwined on his futon.” Up to that point in their relationship, Harmon writes, Robison and Lindsmith “had only cuddled.”

Jack, who had dropped out of high school but was acing organic chemistry in continuing education classes, had hopes for something more. Yet when she smiled at him the next morning, her lips seeking his, he turned away.

“I don’t really like kissing,” he said.

Kirsten, 18, a college freshman, drew back. If he knew she was disappointed, he showed no sign.

On that fall day in 2009, Kirsten did not know that someone as intelligent and articulate as Jack might be unable to read the feelings of others, or gauge the impact of his words. And only later would she recognize that her own lifelong troubles — bullying by students, anger from teachers and emotional meltdowns that she felt unable to control — were clues that she, too, occupied a spot on what is known as the autism spectrum.

As it happens, I just finished teaching a section on long-form journalism; had Harmon’s piece come out a few weeks earlier, I would have included it as an exemplar of the form. One of the risks of an elegantly executed lede is promising the readers more than ends up being delivered — and when a piece starts with two teenagers talking about the first night they spent together, it’s reasonable to wonder whether the rest of the story will sustain that level of emotional detail. In this instance, there are actually scenes that are, if anything, even more evocative. Take the following passage, which comes almost a third of the way into the piece:

From the beginning, their physical relationship was governed by the peculiar ways their respective brains processed sensory messages. Like many people with autism, each had uncomfortable sensitivities to types of touch or texture, and they came in different combinations.

Jack recoiled when Kirsten tried to give him a back massage, pushing deeply with her palms.

“Pet me,” he said, showing her, his fingers grazing her skin. But Kirsten, who had always hated the feeling of light touch, shrank from his caress.

“Only deep pressure,” she showed him, hugging herself.

He tried to kiss her, but it was hard for her to enjoy it, so obvious was his aversion. To him, kissing felt like what it was, he told her: mashing your face against someone else’s. Neither did he like the sweaty feeling of hand-holding, a sensation that seemed to dominate all others whenever they tried it.

Similar to Harmon’s first piece in this series, “Autistic and Seeking a Place in the World,” “Navigating Love and Autism” has already sparked an enormous amount of discussion online. That’s due in no small part to the fact that it tells a story about an oft-covered subject (autism) from a new frame of reference (the perspective of people with autism). Of course, setting out to do something new is one thing; actually doing it is something else. Instead of referring to her subjects as Mr. Robison and Ms. Lindsmith, which is what Times style would typically dictate, Harmon writes about Jack and Kirsten. Instead of having them explain what their lives are like, Harmon writes about their daily journeys.

The impact of these decisions can be seen in a section describing the couples’ courtship.

Kirsten told Jack, at some length, of her desire to be a medical examiner. He replied, at even greater length, about chemistry, his interest having shifted from explosives to designing new compounds for medical use. Sometimes, as they circled the campus, she broke in with questions “What’s that?” she wanted to know when his descriptions grew technical, or “Why?” Accustomed to being treated with something more akin to polite fascination when he held forth on his favorite subjects — he often felt, he said, like a zoo animal — he checked to be sure her interest was genuine before providing detailed answers.

Jack, Kirsten noticed, bit his lips, a habit he told her came from not knowing how he was supposed to arrange his face to show his emotions. Kirsten, Jack noticed, cracked her knuckles, which she later told him was her public version of the hand-flapping she reserved for when she was alone, a common autistic behavior thought to ease stress.

That link is to a short video clip of Jack talking about one of the things that makes his relationship with Kirsten unique:

I think most people, rather than want to be friends with me, they’re like, fascinated by me. It’s like – I don’t like that. It’s like being an animal at a zoo, sort of. And she’s definitely not one of the zoo visitors, so it’s good.

That quote — “she’s definitely not one of the zoo visitors” — is wonderfully telling…and it does not appear anywhere in the story. To include it would have immediately changed the tone of the piece; instead of occurring within the space of Jack and Kirsten’s lives, it would have transformed Jack into a tour guide.

And so, instead of neat summations and bite-sized explications, Harmon’s story is freckled with vignettes that wouldn’t feel out of place in short stories by Raymond Carver or Andre Dubus:

One night as Kirsten cooked dinner, he peered into the pan where she was sautéing vegetables to comment on the way she had cut the cauliflower.

“It’s too big,” he explained. “It won’t cook through.”

“It’s better when it’s not all mushy,” she insisted.

“No,” he said. “You’re just doing it wrong.”

Eventually, Kirsten, unable to contain her tears, fled to the living room.

“What I want,” she told him when they analyzed their clashes in less-fraught moments, “is to be held and rocked and comforted.”

But Jack, believing himself accused of a slight he had not made, could not bring himself to touch her. He needed to be apart, to cool down.

Once, he had tried to do as she requested, stiffly wrapping his arms around her, against all that seemed natural to him. But when it only seemed to elicit more tears, he did not try again.

Instead, he hovered near her. “Stop crying,” he would say, pacing the perimeter of the small apartment and returning to where she sat.

He could not distract himself at those moments, even with the chemistry entries on Wikipedia, or an old episode of “Breaking Bad.”

Anyone who has ever been in a long-term relationship undoubtedly can relate to the emotions being experienced above, and therein lies the power of this story. Here’s another scene:

“Why do you pet Tybalt more than me?” he asked after a visit to her mother’s house, referring to the family dog named for the Shakespeare character.

The talk about the cat, when she raised the issue again last spring, was not much of a talk. He was allergic, Jack told her. And the apartment already felt too small. It was obvious to him that it made no sense.

Yet he had grown up with a cat, Kirsten pointed out. … If he wouldn’t hold her when she was sad, at least she could cuddle a cat.

It was obvious to her, too.

“I don’t want to talk about it anymore,” Jack told her.

They could both see the meltdown coming. This time, as she huddled, sobbing, in a chair in the living room, he stretched out next to her on the couch.

“Go in the other room,” she told him. “You don’t have to be here.”

But he wouldn’t leave.

Kirsten had been working hard with her own therapist to develop strategies for soothing herself. When she found herself in a bad-mood rut, she had agreed with her therapist, she would visualize Fluttershy, the nerdy intellectual character in the animated children’s show “My Little Pony” — of which her knowledge bordered on encyclopedic and whose goofiness made her laugh. …

“I think it’s helping,” he told her.

A cat, she thought, would help more. In recent weeks, she had been showing him irresistibly cute pictures of kittens from a forum on called “aww.” But she did not mention the cat that night. Instead, she asked if he would come to bed with her rather than staying up to play Eve.

“Will you pet me if I come to bed?” he asked.

She agreed.

Sometime in the next few days, I’ll be talking to Harmon about her work generally and this piece specifically — if there are questions anyone would like me to ask, either put them in the comments below or tweet me @sethmnookin. (Shortly after Harmon’s first “Autism, Grown Up” story ran, David Dobbs interviewed her for a great piece in The Open Notebook, a site dedicated to “the story behind the best science stories.”) One thought I want to leave people with in the meantime: This piece is an important example of why big journalistic institutions like The New York Times are such a vital part of our society.

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11 Responses to The New York Times’s incredible piece on the lives and loves of two adults with Aspergers

  1. One thing that’s not visible to readers is the tremendous effort Amy put into writing this story. She travelled from New York to Massachusetts five times to visit my son and Kirsten. The supporting photographers made just as many trips. In addition, a videographer made two trips to shoot those little videos people liked so much.

    Amy and her crew put more work into this than any news story I have ever been part of. She sacrificed holidays, weekends, and family time to get it done. Their dedication is most impressive, and it makes clear why the Times remains The paper of record

  2. mark storch says:

    Great article!!!
    Lovely poetry and story….but…..
    I’m the parent of a 34 year old beautiful woman with autism, Jenny Marley.
    Jen is non-verbal, wears diapers, exhibits extreme pica, has no fear of danger in her environ ment, lives in a group home with 5 other women with developmental disabilities, and has a one-on-one aide for her day hab program to ensure her safety.She is physically active(sometimes hyper), swims, walks the track, and especially loves watching Raffi, Barney, and Bodies in Motion videos over an over again.
    I don’t want to downplay anyone else’s place in the world, I do have compassion for everybody, but I believe that articles like this give the public a conception of autism that has nothing to do with individuals with “classic autism”.
    Thank you

    • kevix says:

      nobody on the spectrum wants to downplay the challenges for people with ‘classic autism’ (sorry for the people-first language, I could not find a better wording). But the public needs to learn about the entire spectrum and not just one segment of it. I think we all win when we are all made visible to the public.

    • outoutout says:

      I don’t think this article is meant to give the public a general conception of anything. It’s just the personal story of two individuals with Asperger’s Syndrome. They’re not claiming to represent everyone on the spectrum or even all Aspies; it’s just their story. That’s it.

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  4. I happened on this story at Starbucks when I had time to read it through and through. It is a well-written piece describing people who see the world through different eyes and emotions. I thought it was sensitive and transparent. I have two friends with children who test on different ends of the autism spectrum. I understand what the reader above was trying to communicate. Everyone is not quite like Jack and Kirsten – even they have different challenges. But the similarities are profound and having their viewpoint articulated is immensely valuable. This is a beautiful piece and deserves great attention.

  5. Pingback: Autism Info & Resources » Blog Archive » Love, Autism, And Excellent Modern Journalism – Palisades Hudson Financial Group

  6. David Kroll says:

    How wonderful to see Mr. Robison commenting here – and singing the praises of the work ethic of Amy Harmon and her team.

    Seth, what I really love about this post is how you take apart *why* so many of us were blown away by this work. I completely missed that the two were referred to by first name rather than the NYT honorific. You must be a fabulous professor and the MIT Science Writing Program is lucky to have you.

    I also want to add that Amy has yet another gift: the desire to engage with her readers. She responded personally to dozens of tweets from admiring readers and was even open to having a DM conversation with me.

    I agree completely that support for this type of intensive, longform journalism is exactly why the Times is such an important paper. Moreover, the additional features that can only be shown online demonstrate that the Times groks the new media landscape. For these and many other reasons, I gladly pay my digital subscription.

  7. Pingback: Autism Info & Resources » Blog Archive » Love, Autism, And Excellent Modern Journalism – Palisades Hudson Financial Group

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