They’re Autistic—and They’re in Love

They’re Autistic—and They’re in Love

Article from Glamour - February 2, 2009

By LYNN HARRIS

There are two bedrooms in the cozy Jackson, Mississippi, apartment: Dave Hamrick’s is like a dad’s den, with a striped beige armchair and a hanging map; Lindsey Nebeker’s is darkly girly, with spiky dried roses hung over a bed topped by a graphic leaf-print quilt. After work on any given evening, Dave and Lindsey are likely to be orbiting the home separately, doing their own thing. Dave may be flipping through magazines, pausing to stare fixedly at design details or leaning in to inhale the scent of the pages. Lindsey typically sits down to eat alone—from a particular plate with a particular napkin placed just so—and may slip so deeply into her own world that Dave has learned to whisper “Psst…” when he approaches so as to not startle her and, on a bad night, make her scream.

An observer might assume the two are amicable, if oddball, roommates. But Lindsey, 27, and Dave, 29, are deeply in love. And they are autistic. Every day of their relationship, these two beat tremendous odds. That’s because the very definition of autism suggests that for adults with this disorder, love—especially the lasting, live-in kind like Lindsey and Dave’s—is not in the cards at all.

About 1.5 million people in the United States (an estimated one fifth of them are female) have autism, with varying degrees of severity. The disorder can create sensory issues, like hypersensitivity to touch and sound, and impair social skills. While some autistics are gifted (often in music or math), they may be utterly baffled by the nuances of small talk and eye contact. Expressing empathy can be virtually impossible. Imagine a first date—never a breeze for any of us—with those limitations.

“I hear a lot of loneliness, sadness and fear among the autistic adults I meet,” says Stephen Shore, author of Beyond the Wall and an internationally recognized expert on autism who has the disorder himself. “Without a natural understanding of communication, it’s much more difficult for people with autism to find and sustain an intimate relationship.” They have hearts that feel; it’s the funky wiring in their brains that makes things so challenging.

Contrary to stereotype—the Rain Man-esque loner who’d rather count toothpicks than make friends—adult autistics often know what they’re missing out on and hope to find love, like anyone else. Since hanging in a crowded bar or going on a blind date can be terrifying, many connect through social-networking websites. Still, successful relationships aren’t very common, especially relationships in which both partners have autism.

Lindsey and Dave have experienced their fair share of heartache: at school, among so-called friends, in their search for partners. Yet both have also summoned the courage to take a risk, perhaps the biggest risk of their lives, for each other. Theirs is a still-unfolding tale—an unconventional story about unconditional love.

Autism has been making headlines lately, especially now that more and more children are being diagnosed with it. Celeb mom Jenny McCarthy, for one, speaks and writes about her son’s autism. The head writer for Days of Our Lives developed a story line about an autistic child based on her parental experience. Last fall, autism-awareness advocates raised hell over the “Autism Shmautism” chapter in comic Denis Leary’s latest book. Observations included “Yer kid is not autistic. He’s just stupid. Or lazy. Or both.”

The attention, good and bad, has made it somewhat easier for adult autistics to find acceptance in the world. Former America’s Next Top Model contestant Heather Kuzmich—who has Asperger’s syndrome (considered an autism spectrum disorder) and who had trouble making eye contact in TV interviews—has become a role model. Claire Danes is starring in a forthcoming HBO biopic about best-selling autistic author Temple Grandin. Also helpful are sites like wrongplanet.net, geared toward autistic adults, where users can find answers to questions such as “How do I learn to flirt?”

Lindsey, an auburn-haired beauty with an artistic, bejeweled style you might call peasant-goth, has been more fortunate than others (including her severely autistic younger brother). When she was 19 months old and not talking, her parents tested her for autism, and she got the benefit of early treatment. Today, her occasional wandering gaze and the forced cheer in her voice make her seem just a bit off. It takes effort, she says, not to sound “robotic.”

Even as Lindsey’s speech caught up and her talent for playing piano emerged, she developed habits typical of autistics: staring for hours at the fibers of a carpet, for example, or performing soothing rituals like stepping on cracks in the sidewalk. Classmates teased her mercilessly, and she’d come home with kick me signs on her back. Real friendship seemed painfully out of reach for the eccentric, awkward girl who came across as blunt. In high school, when another student asked Lindsey what she thought of her new makeup, Lindsey recalls, “I told her it looked fake. She became silent, and I knew I had blown it.”

Depressed, Lindsey burned herself with a curling iron and cut her arms with safety pins, hiding her injuries with sweatshirts. “Lindsey’s struggles were heartbreaking,” says her mother, Anne Nebeker, 63, a retired teacher in Logan, Utah. “I was very anxious about how she would manage as an adult and whether she would have a social life at all or find love.”

Yet Lindsey’s torment fueled a determination to learn the very skills that eluded her. Her best resource: Dale Carnegie’s self-help classic How to Win Friends and Influence People. Advice as simple as “Be a good listener” began to help, especially by college. The subtleties of romance, however, remained a mystery. She’d fool around with a guy and get dumped a few days or weeks later without explanation. “I had no idea what I was doing that was scaring guys away,” says Lindsey. “I felt like I had failed somehow.” In her early twenties, she gave up. “I decided to focus on the friendships I’d managed to make,” she continues, “and quit worrying about love altogether.”

That’s when she met Dave. It was 2005, and they were at an autism conference in Nashville. Diagnosed at three, Dave grew up with pronounced fixations. He’d tote around empty Clorox bottles, and carry a thermometer to assess the air temperature. Like Lindsey, he had trouble making friends. Dave also has Tourette’s syndrome, which can overlap with autism; it’s the cause of his near-constant head jerks and occasional stuttering and grunting noises. His parents were told he would always be in special education, never able to work or live on his own. By fourth grade, he was in a mainstream class; he went on to college, where he majored in meteorology.

When he and Lindsey met, Dave says, “I was hopeful, but realistic.” They e-mailed and talked on the phone, then hung out again a few months later at a conference in Virginia. On their last night there, at a café, Dave took the plunge. Seeing Lindsey’s hands resting on the table, Dave reached for them. “When she didn’t pull away, I knew I had a positive result,” he says in his endearingly geeky, textbookish way. The next day, he gave her a bouquet. “I’d never gotten flowers from anyone, other than my dad after a piano recital,” says Lindsey. Looking Dave in the eye was hard for her. So, she says, “it was a relief to close my eyes and lean in to kiss him. I had my guard up, but some part of me was willing to give it a try.”

Two years later, Lindsey and Dave moved in together. It’s a big step for any couple, but for autistics, it can mean merging two rigid ways of life. Dave likes it cool; Lindsey likes it warm. Dave needs his mattress firm; Lindsey needs hers soft. These may sound like trifles, but what’s merely irritating to others may be, for an autistic, 20 fingernails on 20 blackboards. They’ve discussed every last detail, down to lightbulb preference.

When Dave awakes for work, Lindsey—a night owl—may still be up from the evening before. By noon, she’s improvised a few riffs on her beloved Steinway and is performing the 20-minute ritual of preparing her three thermoses of coffee (touch of flavored syrup, drop of almond milk, heat, adjust, repeat), which she will take with her to her job…at Starbucks.

Being a barista isn’t her Plan A. She dreams of studying photography or special ed in grad school. Dave has turned his fixation on temperature into a meteorology career (his e-mail name is “weatheringautism”). An entry-level forecaster at the National Weather Service, he finds his job exciting. It requires only limited face-to-face contact with strangers; on a typical day, he gives callers weather reports or heads out, alone, to release a weather balloon.

Both often come home exhausted, like actors who’ve been on stage all day. That’s one reason Lindsey and Dave need so much time alone after work, and why they rarely call each other to check in and chat. “Every day, we put out so much effort to speak properly in the workplace and other social settings,” says Lindsey. “When we talk on the telephone, our conversations normally don’t last long because we get uneasy when the small-talk script runs out.”

On weekends, they’re more likely to prowl a bookstore than go to a party or a restaurant. Their friends—mostly from college and conferences, some of whom are autistic—don’t live nearby. They also prefer to eat by themselves. Dave, as if he had superhero hearing, is sensitive to the sound of chewing. He can eat only cooked vegetables—never raw, crunchy ones. Lindsey finds it so torturous to deviate from her food rituals that Dave’s occasional invitation to dine out can send her into sobs. “I just keep telling him, ‘I’m so sorry, I can’t,’” she says. “I feel awful about it.”

Once in a while, with enough notice, Lindsey says yes and they’ll head to a bright and bustling pan-Asian buffet; it’s the opposite of romantic. Dave, lit up like a kid on Christmas Day, will happily put away several crabs’ worth of crab legs. Lindsey, wary of food she didn’t prepare herself, would rather prod stiffly at her wasabi than moon over Dave. But what other diners can’t see is something even more tender than canoodling: Lindsey and Dave’s willingness to step outside their comfort zones to please each other.

Adjusting to sex took time. Lindsey was somewhat nervous about the fact that she was a virgin and Dave was not. “Spontaneity was not an option,” she says. “People with autism really have to mentally prepare for everything.” She felt bogged down by the procedures she’d established in her head from seeing romantic movies like Pretty Woman—“OK, now I’m supposed to take off his shirt.” Three years into their relationship, though, they readily visit each other’s beds.

Marriage, they say, is a possibility; children, they’re less sure about. Both worry about a genetic predisposition to autism, a valid concern, especially given that both Lindsey and her brother have the disorder. Even if they adopt, parenting seems perilous. “Dealing with our rituals and sensory issues demands so much from us,” says Lindsey, “that I don’t know how we’d take care of someone else.”

Lindsey still gets depressed when people misunderstand her. “Sometimes, after a bad experience, I shut myself off from the rest of the world,” she says. “I don’t have to face judgment in my room.” Recently, as a man at work was talking, she tuned out but kept nodding and smiling (a frequent habit). Suddenly he blurted, “Did you hear what I said? I got mugged last night.” Lindsey was crushed. “It’s exhausting,” she says, “to be 27 and still have to work at getting interactions with people right.”

These are the times when she needs Dave most. “He reminds me that tomorrow is another day,” she says. “He makes me feel like I’m worth something.” Dave loves to stand behind her, wrap his arms around her waist, press his nose into her hair and take long, deep breaths. Last Valentine’s Day, he festooned their bathroom mirror with plastic gel hearts (he’s been obsessed with the shape since he was a kid). They’re still there today.

Though connecting with others will be a lifelong struggle, Lindsey and Dave have formed a bond that defies their autism. They may sometimes come across as blunt to strangers, but speaking their own minds clearly and directly—just as they did when they moved in together—has helped their relationship. There’s none of the “if you have to even ask what’s wrong, then forget it” passive-aggressiveness many couples experience, no expectation of mind reading. “People like Lindsey and Dave put so much thought and dedication into making their relationship work,” says Diane Twachtman-Cullen, Ph.D., a speech-language expert who specializes in autism and knows the couple well. “Frankly, we could all take a page from their playbook.”

Lindsey’s mom is similarly awed. Anne Nebeker recalls that when Lindsey and Dave came to visit her for the first time, “we went to a local lake. The two of them were running around and splashing water at each other, and I was so pleasantly surprised to see them doing a normal-couple thing like that. Even when Lindsey calls him ‘Hon’ and it sounds natural, not forced and rehearsed, I am amazed. I am so happy to see her in love.”

These days, when Dave whispers as he approaches Lindsey, she’ll whisper back; it’s become a term of endearment. “Psst…,” he’ll say after he walks in the door and sees Lindsey in the living room. Her face lights up when their eyes meet. “Psst!” she’ll respond, smiling. She knows that with Dave, she’s in a safe place. “I’m so lucky to have found him,” she says. “When I’m with him, I forget about my challenges.”

The original article can be found here:
http://www.glamour.com/magazine/2009/02/theyre-autistic-and-theyre-in-love

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As with the story of Jerry and Mary Newport, I find myself unable to fully relate to the experiences of Lindsey Nebeker and Dave Hamrick, one because the condition I have - Aspergers Syndrome - is somewhat milder than full on Autism, and two because I yet to even date a girl let alone have a relationship. Although, thinking about it, the latter does sort of allow me to relate as just like they became frustrated in their search for love and even began to think that they might never meet anyone, I too often feel much the same way, having been looking for someone for a while with absolutely no success. This ability to relate to that aspect of Lindsey and Dave's lives actually makes their story all the more inspiring because if they can find love why can't I?

There is much more to Lindsey and Dave's story than just two people with Autism finding love though, as not only have they found it, they have also found a way to maintain it. Their tends to be certain conventions about relationships and how they should be conducted - couples should sleep in the same bed in the same room for instance - and these things are generally conducted almost to the letter by neurotypical couples. The pressure to conform to such rules is probably a key reason why relationships between individuals with Autism can often struggle, perhaps even fail, but Lindsey and Dave have taken the route of not conforming to such rules, making their relationship work for them.

They certainly seem to have found a way to make a relationship work around their personal situation and I can't help but feel that if I ever do find myself in a relationship I may be able to take a few pointers from Lindsey and Dave. The idea of sharing a bed for example - now, this isn't to sound selfish or anything but when I am sleeping I need my personal space, it is just something I probably wouldn't be able to change. So, the concept of having a separate bed, a separate room in fact, to my partner would actually be quite desirable. Particularly if I found myself with a partner who is also Autistic, each having our own space could be very beneficial to the relationship as a whole. This is also true of my personal hobbies and interests - while I would love to meet someone who shares the exact same passions as me, the chances of that happening aren't wholly promising given my eclectic range of interests, and for a relatoonship to really work I would need my own space. I'm not saying that I wouldn't make some sacrifices to make a relationship work but there are some things I could never change about myself and someone who truly loved me wouldn't expect me to just as I wouldn't expect someone I truly loved to give up everything for me. Lindsey and Dave have shown the way for people with Autism, Aspergers or other ASDs to enjoy a healthy, loving relationship free of the pressures that neurotypical ideas about relationships place on people like us. This is something truly inspiring.

The way that Lindsey and Dave manage to come out of their comfort zones for each other is also inspiring, showing that they truly are in love and are prepared to make sacrifices for one another. I just hope that if and when I meet the right girl that I am able to show my love in the same way that Dave shows for Lindsey and vice versa. Theirs is a truly sweet and romantic story, one that puts any of the tired and predictable nonsense from Hollywood movies to shame and the fact that it is 100% real, not fiction, only makes the story all the inspirational.

Lindsey and Dave have achieved something that many people with Autism Spectrum Disorders, me included, aspire to but many are unable to achieve - they have formed a connection with someone they truly love and are actually keeping the relationship alive. Anyone on the Autism Spectrum cannot fail to be inspired by this. Lindsey and Dave have shown us that love, even the lasting kind, is possible for people like us. Their story is only only a delightful one but that should give hope to lonely people with Autism all over the world.

Robert Mann BA (Hons)