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Asperger’s syndrome challenges ties of marriage

06/07/2009 01:00 AM EDT

BY DAVID FINCH

New York Times News Service


The New York Times / CHRISTOPHER SILAS NEAL

It wasn’t working, any of it. Our third year of marriage threatened to be our last. I’d become cynical and withdrawn, obsessive and preoccupied, dismissive and unhelpful.

“I don’t know when things got bad,” Kristen said, wiping away tears. “I feel like I’ve lost you, and I don’t know what will bring you back.”

In reality she hadn’t lost me. She’d found me. The façade of semi-normalcy I’d struggled to maintain was falling away, revealing the person I’d been since childhood. I didn’t even know what was wrong with me, though my wife, a speech pathologist who works with autistic children, had her suspicions. Even so, it would be another two years before she would put all the pieces together and attach a name to what was ruining our marriage: Asperger’s syndrome.

During Kristen’s first few years of practice, she worked only with severely autistic children. But as she expanded her clientele to include higher-functioning kids, she started learning more about Asperger’s syndrome, a comparatively mild autism spectrum disorder characterized by egocentricity and impairments in communication and socialization. That’s when she started seeing parallels to my behaviors.

One evening after we put the kids to bed, Kristen approached me with a smile, wrapped me in a hug and asked me to come downstairs to her office. First she allowed me to complete my 8:30 p.m. routine, fully aware of how essential it is to my peace of mind: circle the downstairs, note which lights are on and stare out the front window, visually lining up the neighbors’ rooftops. I finally joined her at her desk, where she sat at the computer, ready to administer an online Asperger’s evaluation.

For the next two hours, Kristen led me through questions that at times had us both laughing with recognition:

• Do you often talk about your special interests whether or not others seem interested?

Who’s not interested in cleaning-product slogans?

• Do you rock back and forth or side to side for comfort, to calm yourself, when excited or overstimulated?

Where’s the hidden camera?

• Do you get frustrated if you can’t sit in your favorite seat?

Friendships have ended over this.

And on it went.

During the years Kristen and I dated, I was on my best behavior. When I slipped, she seemed to find my eccentricity endearing. I remember her laughter upon discovering dozens of pictures I had taken of myself to see what I might look like to other people at any given moment: me watching TV; me about to sneeze; me on the toilet, looking pensive.

She found it pitifully charming when I would stand alone at parties, kind of dancing, or follow her from room to room, unable to engage with anyone else.

That’s just how it goes with Asperger’s. Many of us who have the disorder, identified by the Austrian pediatrician Hans Asperger in 1944, could probably pass for normal if it weren’t for three defining characteristics: egocentricity, odd and sometimes repetitive behaviors, and an obsession with a special interest.

The obsession tends to make us experts in strange subjects (for me, motorist regulations, the characteristics of sounds and the behavior of cattle, among others), with an enthusiasm for discussing them at length at cocktail parties, oblivious to audience interest.

On a friendly level, for short periods of time, I was able to sustain a wonderful version of myself. But Kristen was living with me, and had become increasingly skilled in assessing autism spectrum disorders.

She started observing my unusual behaviors — rigid adherence to routines, unusual reactions to social stimuli, conditional regard for the needs of others — as I became less capable of hiding them. Before long, my endearing quirks multiplied and became exponentially more annoying until eventually her life was flooded with my neuroses.

As I exited yet another gas station without getting gas, she asked, “Because it has an odd number of pumps?”

At a Cubs game, after I’d become overly attached to a friendly group of guys sitting near us, she said: “Yes, they were fun to talk to, but I don’t know if those guys want to be your friends. No, you may not ask them.”

And annoyed by my constant questioning about how long the Thanksgiving feast at Aunt Deb’s might last this year, she snapped: “Why does it matter how long the dinner will be? I have no clue. None. Get over it.”

Ashamed by my seeming insanity, I withdrew until our life together became long car rides without conversations or laughter, silent evenings watching TV in the same room but feeling worlds apart, months without any real connection.

But that night when Kristen evaluated me was a watershed moment. I laughed and cried as the questions so perfectly revealed me. My score: 155 out of 200. That meant, as Kristen put it, “a whole lot of Asperger’s” — a diagnosis later seconded by a health-care professional.

As a control, Kristen evaluated herself. Her score: 8.

Now I knew what was wrong. But fixing the problem was another matter. How does someone with Asperger’s rid himself of the very coping mechanisms that allow for day-to-day functioning?

Autism spectrum disorders are not cured with medication, but their associated behaviors can be worked with. Fortunately, I was living with a highly qualified therapist with a strong motivation to help. Her first mission: figure out how to get me to communicate.

Whenever my routine got disrupted, or I was made to do something that didn’t interest me, I would shut down, unable to engage in any constructive way. To get me to overcome this, Kristen started pushing me to my breaking point, backing off just before I was about to snap. If she thought I could handle 10 minutes of a TV show I didn’t pick, but 20 minutes would send me over the edge, she would change the channel after 18 minutes.

She also stopped allowing me to swallow my frustrations. I would be sitting on the couch, upset about, say, the messy house, and I would hear: “Come on, Dave. Out with it.”

“What?”

“Your jaw is clenched, and you haven’t spoken all night.”

Minutes would pass as she stared at me.

“All right, damn it, look, this place is a mess! Anytime I need to walk anywhere I’m stepping on books and clothes and toys, and there’s piles of laundry on the chairs that need to be folded. I don’t see how this is ever going to work if we can’t keep a clean house.”

So we worked on how to vent constructively, a process that began with her having to explain to me why my insolent behavior might upset people. Positive changes were rewarded with her newfound joy in being in my company, which is what I craved more than anything.

A few months later, the same conversation sounded more like this:

“What’s the matter, Dave?”

“The house is such a mess, you know? It’s frustrating. Doesn’t it seem like we’re barely able to keep a handle on things?”

“Well, sure. We have two toddlers, and you work really late sometimes. I can’t keep them entertained, educated, on schedule and keep up with the housework. Something’s got to give, and I prefer it not be my time with them.”

“Fair enough.” Then something occurred to me. “I can help if that’s what you need.” Duh.

Acquiring empathy seemed a taller order, given that my Aspergerish point of reference is myself in every circumstance. (Someone just slipped and killed himself in the men’s room? How long until they get him out of there so I can go?) But I’ve learned that people can develop empathy, even if by rote.

I started asking Kristen how her day was and then paying more attention to her body language than her words. If I sensed she was tired, I would take the kids out so she could have quiet time. If she seemed really burned out, I would offer to give her a foot massage, or to just listen. Soon these started to feel like real rather than manufactured emotional responses.

We’ve made steady progress. We’ve even reached a therapeutic milestone. When something is wrong, Kristen is able to whisper to me those three magic words: “Can we talk?” And instead of shutting down and freezing her out with silent brooding, I’m able to provide an equally magical response: “Yes.”

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