Published: August 19, 2012
Relationships are challenging for people with autism spectrum disorders
By Tammie Smith
Edward Wren used to automatically assume that when he liked someone romantically, that person returned the feelings. So he used to “jump right in,” the 29-year-old said.
“It’s hard to grasp where a relationship is,” said Wren, who lives in a home operated by Richmond House, a nonprofit organization that provides supportive living to young adults who have higher functioning forms of autism such as Asperger’s syndrome.
“I had to figure out boundaries, where to start, what was appropriate, what was inappropriate. How fast to go. How slow to go,” Wren said.
Having an innate sense of those things is difficult for anyone, but because he has an autism spectrum disorder, it’s even more of a challenge.
Where neurotypical people — a term some in the autism community use to describe non-autistic, neurologically typical people — more easily pick up nonverbal cues that someone is interested or bored or hurt, people on the autism spectrum often need to have it stated more plainly.
Combine that with other autism spectrum traits — a tendency to avoid eye contact, bluntness sometimes to the point of being insensitive, preferring to spend time alone, often singularly focused on narrow or obscure interests, sensitivity to touch and certain sounds — and connecting with another person romantically can be difficult.
“Obviously, with autism, the social and communication deficits can be pretty profound. So when you think about those who are on the autism spectrum, it’s usually those who are less impacted, who may have Asperger’s syndrome, who have an easier time with relationships,” said Staci Carr, technical assistance coordinator for the Autism Center for Excellence at Virginia Commonwealth University.
“Easier” is a relative term, said Carr, a doctoral candidate in developmental psychology at VCU. “It’s still very challenging.”
A Centers for Disease Control and Prevention surveillance program that tracks autism diagnoses in 14 states estimates that one in every 88 children has an autism spectrum disorder.
Love for people with autism may look different from how love is usually depicted — people gazing in each other’s eyes with “love yous” ending every conversation.
Carr points to the character Sheldon Cooper on the TV show “The Big Bang Theory” as a fictional portrayal that might be closer to reality.
“Sheldon has a girlfriend. It’s a very scripted relationship,” Carr said. “They talk about being boyfriend and girlfriend but they don’t do the typical things girlfriends and boyfriends do. Those who are more impacted (by autism) may have boyfriend-girlfriend, but it’s more hanging out together, playing games together, not so much the intimacy.”
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But it can be more. At a Commonwealth Autism Service conference in Richmond in March, Lindsey Nebeker and David Hamrick, each diagnosed with autism as children, talked about their relationship of six years. The couple has been featured in Glamour magazine, on National Public Radio and on “Good Morning America.”
They share an apartment in the Washington area, but each has space to retreat to.
“You accept that you and your partner are individuals, and when you care for each other enough, you work with it,” Nebeker said.
“Can an individual with autism feel love?” Nebeker said. “It’s not that we don’t feel love. It’s just that we may have difficulty communicating it to the level which others are able to understand. Strong emotions that express our vulnerability are often overwhelming,” said Nebeker, who blogs and tweets about life with autism.
While Nebeker’s presentation was sentimental and personal, Hamrick’s talk was more practical, with a list of dating dos and don’ts, such as showing up on time, dressing appropriately and avoiding messy foods on a first date. When he was dating, he found himself with a heightened fear of rejection and unable to differentiate between flirting and genuine friendliness — feelings, as he noted, not limited to those with autism.
“Keeping a good conversation going was a little bit challenging. I wasn’t much into small talk,” said Hamrick, a college graduate and meteorologist who grew up in Williamsburg. He said he improved his technique by watching how his friends behaved with girlfriends and reading self-help books such as Dale Carnegie’s “How To Win Friends and Influence People” and “Superdate” by Tracey Cox.
Gena Barnhill, who teaches introductory and advanced courses on autism topics at Lynchburg College and is an assistant professor and program director for the school’s master of education program in special education, also is the mother of an adult son with an autism spectrum disorder. She has seen him struggle interpersonally.
“He had a girlfriend when he was in college. She was pretty bright. She complemented him. He sometimes would just say things that would sort of fall out of his mouth. She set up a signal to him. Share it with me before you blurt it out,” Barnhill said.
Since then, there have been first dates that didn’t go anywhere. As a parent, she also worries about his vulnerability.
“Some people have actually taken advantage of him,” Barnhill said. “It sounds kind of weird, him being the male. But there are more worldly women out there who sensed his naiveté. That can be a challenge as well.”
Some experts think undiagnosed Asperger’s syndrome among adults is probably more common than documented.
“People who were kind of quirky in high school and have been loners, who were the nerds, are in marriages or relationships, and the marriages are not going well,” Carr said.
“They are having a hard time creating relationships. Then they have the diagnosis. It’s not like the diagnosis really does anything other than say this is why I have these issues. You still have to address the problem.”
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David Finch is an example of that. In his best-selling memoir, “The Journal of Best Practices,” he writes about being diagnosed with Asperger’s syndrome five years into his marriage. Finch spoke at a Charterhouse School program in Richmond in April.
“The world is wired for social intuition,” Finch said. “Everybody just kind of gets it, and then there’s us.” In high school, he excelled, but socially he was the “weird kid” and an “incredible geek.” In college studying music engineering and at his first job at a semiconductor manufacturer, he was around like-minded people like himself.
“It wasn’t until I got married and was not able to bring my ‘A’ game like I was in the workplace to my home life, and my home life just unraveled,” Finch said. His diagnosis came when his wife, Kristen, a speech therapist, recognized traits in him that she was seeing in some of the children she worked with.
“That’s when she began to piece it together,” Finch said. “She didn’t diagnose me, but she clued me in.” A formal diagnosis was made by a different professional.
“It changed everything for us in an instant,” Finch said. “She looked at me and said, ‘I get you now. I get you. We’re going to be OK. It’s Asperger’s.’ She kissed me on the forehead and went to bed and slept better than she had in years.”
He described his marriage as “neurotypically diverse.”
“Kristen is kind of my guide to her world. I’m her guide to the autistic world,” Finch said. He began to work on learning new behaviors.
“The brain is nothing more than a bunch of neurological pathways. You can unwire old behaviors and learn new behaviors, wire new neurological pathways and circuits that are going to enable you to live the kind of life you want to live,” he said.
“For me, what it took is I started writing things down everywhere. My book is called ‘The Journal of Best Practices’ because I would write things down on Post-it notes and little scraps of paper, my notebook. … I would write things like, ‘Don’t change the radio station when she’s singing along,’ ” and … ‘Remember to fold and put away the laundry rather than just take out what you need from the dryer.’
“Things are a little more dialed up, a little more specific in what we have to do,” Finch said. “I need to be taught things that other people don’t need to be taught necessarily.”
After about two years of effort, he said he and his wife, who knew each other in high school, realized they felt like best friends again.
It is possible to live a very fulfilling life, Finch said. “It takes love, understanding and guidance. It also takes a willingness and ability to adapt.”
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