Style

The Highs and Lows of Finding Love on the Spectrum

I once flew more than 7,000 miles to celebrate the holidays with my long-distance boyfriend. As my flights crossed eight different time zones, I gained hours from Dubai to Pittsburgh, making it the longest Christmas I ever experienced. I was on winter break from my job as an English professor in the United Arab Emirates.

My boyfriend and I spent most of the day visiting our families together. By the time we were alone, I was physically and emotionally drained from the socializing, not to mention the travel.

“Open one gift,” he pleaded that night at his house in Pittsburgh. I felt a pang of guilt because I didn’t have one for him yet.

“How do you like my Charlie Brown Christmas tree?” he asked.

That was supposed to be a clue: There was a one-carat diamond ring hanging on it. But all of his indirect attempts to propose were lost on me before I fell asleep.

The next morning, he got down on one knee and pointed to the ring on the tree.

Spoiler: I married him.

Jen Malia and her husband, Dave Swartz, on their wedding day, June 19, 2010, in Ochos Rio, Jamaica.

As it turns out, we are both neurodivergent — a term that describes people who have brain function and behavior that diverges from the majority — but neither of us knew it until after we were married.

[Sign up for Love Letter and always get the latest in Modern Love, weddings, and relationships in the news by email.]

Only a year after we tied the knot, my husband was diagnosed with attention deficit hyperactivity disorder, or A.D.H.D., at 34 by a clinical psychologist in the United Arab Emirates. My husband suspected that he needed testing accommodations for his graduate coursework, which led him to get diagnosed.

Five years later, I was diagnosed with autism spectrum disorder, or A.S.D., at 39 by a clinical psychologist in the U.S. I saw the signs of autism in my then two-year-old daughter. My research led me to conclude that we were both on the autism spectrum. I wrote “My Daughter and I Were Diagnosed With Autism on the Same Day” for The New York Times.

My husband was a mere acquaintance whom I never talked to when we met in junior high school in Pittsburgh. I was selectively mute as a child, which means I was only comfortable talking to a small circle of close family and friends. Thirteen years after our high school graduation,I got a Facebook message from him. I almost didn’t respond because even socializing on social media is hard for me.

But six days later, I got the courage to reply. The messages back and forth eventually turned into phone calls and later meeting up in person. Our friendship gradually turned into a romantic relationship.

Our diagnoses came after the wedding, but from the beginning our shared neurodivergence was unwittingly the foundation on which the relationship was built. It’s part of our identity and influences how we communicate with each other and every other aspect of our relationship.

At the time I was in high school alongside my future husband, I wish I’d had resources like “The Spectrum Girl’s Survival Guide,” which was written by Siena Castellon, a 19-year-old living in London and seeking to help other autistic teenagers with dating tips, among other advice. (Overall, Ms. Castellon explained, “Autistic girls tend to be literal and believe what they are told,” making them “much more vulnerable” to predatory boys with ulterior motives.)

Autistic adults diagnosed late in life have long known, on some level, about their communication challenges when it comes to romance. Mike Jung, a 52-year-old married man from Oakland, Calif., was diagnosed with autism spectrum disorder at 47. “I always felt like people who were leading active romantic and sexual lives, which I more often than not wasn’t, were somehow able to intuitively communicate in ways that were inaccessible to me,” he said.

Long before he was diagnosed with A.S.D. at 35, Steve Asbell of Orange Park, Fla., had one of his worst dating experiences. He had traveled to Kansas to see a woman he considered to be his “long-distance girlfriend.” It was only after approximately “43 missed social cues and 71 euphemisms” that he understood what was happening. “If I had known what the word ‘hookup’ meant, I would have stayed home,” Mr. Asbell said.

Now happily married at 38, Mr. Asbell said that he “was never the one to ask a girl out.” Dating in the “conventional sense,” he said, felt odd to him because he had to juggle “conversation and politeness, all while eating and holding eye contact. It was like a job interview that never ended.”

These issues are now becoming more widely understood, as the romantic lives of autistic adults are increasingly represented in popular culture. Helen Hoang, a 39-year-old romance author, was newly diagnosed with autism spectrum disorder when she wrote “The Kiss Quotient,” a romance novel about an autistic woman who hires a male escort to teach her about dating and sex. Her second novel, “The Bride Test,” is about an autistic man who avoids relationships because he doesn’t believe he’s capable of love, so his mother takes it upon herself to find him the perfect bride.

“It’s important to show autistic people having romantic lives,” Ms. Hoang said, because it “combats the desexualization and infantilization of autistic people, represents autistic people in a more complete and authentic way, and shows individuals within the autistic community who lacked hope before that it’s possible.”

A popular Netflix reality show, “Love on the Spectrum,” gives an inside view of what dating and relationships are like for young autistic adults. The show debunks the stereotype that autistic people aren’t interested in romance, dating and relationships.

While many in the autistic community found “Love on the Spectrum” to be a sensitive portrayal, not everyone did, of course. Stim4Stim, a podcast hosted by Charlie H. Stern and Zack Budryk, who are both autistic, was founded on their disappointment with how the show portrayed the romantic lives of autistic people.

“No adult on a dating show should be subjected to their parents and siblings giving interviews about their private details and sex lives,” said Mx. Stern. With their podcast, Mr. Budryk hopes they will capture the “breadth” of autistic adults’ romantic experiences by sharing their own “fairly underrepresented romantic history” and that of others.

The underrepresented include people like Lyric Holmans, the 34-year-old blogger behind Neurodivergent Rebel, who identifies as autistic, queer, nonbinary and gender fluid. They have a long-term committed relationship with a neurodivergent partner. “Any romantic partners or love interests must be with people I enjoy being near more than I like being alone — and I really like being alone,” said Mx. Holmans.

“Dating was extremely difficult for me,” said Sara Luterman, an autistic person who identifies as queer and lives in Silver Spring, Md. “I used to get very nervous about even the possibility of going on a date. For a while, I thought I might just be too weird to date, and that I would die alone.” Over time, though, she worked through those fears and insecurities. Now 31 and engaged, she is happy to have the romantic partnership she always wanted.

Of course, an engagement — and all the socializing and celebration-prepping that typically goes with it — can bring its own issues. Planning her 2019 wedding to her high school sweetheart was “exhausting,” said Alaina Lavoie, a 28-year-old program manager for We Need Diverse Books who is autistic, queer and nonbinary. She and her wife decided to do away with many of the traditional wedding customs, and thankfully, Ms. Lavoie said, this made the process “less stressful.”

But it’s not always easy to avoid the pomp and circumstance. During the preparations for my own wedding in Jamaica, I had what I now know was an autistic meltdown — an explosive anduncontrollable crying fit. While wedding planning can cause anyone to have an emotional breakdown, an autistic meltdown is far more extreme. When my brain is overwhelmed from sensory overload, I scream gutturally, lose my impulse control and feel completely helpless.It all started when the wedding planner inundated me with questions.

Do you want to get your hair and makeup done? What kind of bouquet do you want? What kind of wedding cake? Do you want to use the terrace overlooking the Caribbean Sea? Or the beachfront with a trellis?

Making decisions for what everyone kept telling me would be the best day of my life was utterly overwhelming. It certainly wasn’t the first time my fiancé had seen a meltdown, but I was embarrassed to have one over our wedding plans. In the end, my wedding day turned out to be the best day of my life, all laughing and smiling and no crying, except happy tears.

Eleven years later, I’m still happily married, with three children, and I’ve figured out what love can look like to an autistic adult.


Jen Malia is an associate professor of English and the creative writing coordinator at Norfolk State University. She is also the author of the children’s picture book, “Too Sticky! Sensory Issues with Autism.”

Related Articles

Check Also
Close
Back to top button