When you have an invisible disability, the first challenge is getting other people to believe you — to encourage them to express empathy for someone else. After that, though, you need to learn to listen to how your disability may negatively impact them — that is, to show the very empathy for others that you insist on receiving.
I've consistently confronted this dual task when writing about being on the autism spectrum, a task that can be especially sensitive (if rewarding) when discussing dating with autism. Indeed, my first article published at Salon discussed autism and dating. That was more than four years ago. When my writing career began in 2012, I never dreamed that I would open up about being on the autism spectrum, much less delve into the vulnerable details of my personal life. Yet the subject proved popular and was cathartic to discuss, so I periodically returned to it over the years.
Starting on August 28, 2016, a new chapter began. On that day, I entered a long-term relationship with my current girlfriend, Charlotte.
It took me awhile to develop the nerve to ask her about what she has learned while dating an autistic man, with what is colloquially known as Asperger's Syndrome. Before we started dating, I shared a pair of articles with her that I had written on the subject. In one I reviewed a documentary about dating autistic people, and in the other I interviewed several of my exes. Now it was my turn to ask her: What advice would she give to individuals who were thinking about long-term romantic relationships with people who are on the spectrum?
The main thing she focused on was the difficulties that often arose in communication.
"I can’t dance around or fluff things," Charlotte explained. "I need to say things that I want directly, otherwise you don’t pick up on nonverbal social cues."
Such was the case during a recent Christmas party when I casually mentioned that John F. Kennedy might be a tad overrated as a president (although for what it's worth, I do admire much about him).
"I warned him at Christmas about how my family is conservative and Roman Catholic," Charlotte said. "Within a few minutes, he tells the family how the Kennedys are overrated. I just looked at him, because my great-grandparents had a shrine to Jesus Christ, Mary and JFK in their home."
"I just shot you the look of STFU," she added.
The look didn't work, however, requiring Charlotte to pull me aside and suggest that I focus more on Grover Cleveland, the subject of my Masters thesis and upcoming Ph.D. dissertation.
Speaking of Cleveland, Charlotte pointed out that she noticed I have a tendency to focus more on the esoteric subjects that happen to be on my mind at any given moment, meaning I'm less likely to pay attention in important situations.
"I need to keep you focused and ask if you’re paying attention most of the time. Luckily I can tell when you are present vs. daydreaming of Grover Cleveland or other things," she explained.
As a result, one of the chief pieces of advice that Charlotte gave for other people who are dating autistic individuals is that they need to learn how to adapt to being involved with someone who won't always pick up on nonverbal communication cues and will struggle with other forms of basic socialization.
"I think you need to make sure that future partners communicate and set expectations that are reasonable and not rely on nonverbal communication for cues," Charlotte told me. "I think patience and a good sense of humor are also key as well."
There are also times when my struggles with empathy can be difficult for Charlotte.
"We were driving on the highway on a rainy and foggy night to an event we could not cancel," Charlotte told me. "The road was bad and I was nervous . . . and you start going on about how funny it would be if a truck hit us on the way to the event. As you say that, a truck became impatient and cut in front of us, almost damaging my car. You thought it was funny and at that point I said 'Matt, you need to stop talking right now.'"
Charlotte also made a point of identifying positive aspects of being in a relationship with an autistic man (thankfully).
"There is a lot of fun," Charlotte pointed out. "You often forget a filter which, although at times can be challenging, there is also a lot of funny things and jokes you tell me that you can get away with."
She added, "I look beyond your disability and know that you're a person. And there are things that are not going to be always 100 percent, but it's important to communicate, which is true in all relationships."
I think this is a valuable way of looking at things for anyone in a relationship. It's important to be open to changing one's own behaviors to be a more communicative and responsive partner, and there is nothing unreasonable about insisting on being believed, or wanting your good intentions to be accepted, when you make an honest mistake. Asking for help you when you're struggling with a problem, whether or not it's related to a disability, is also a practice everyone should embrace.
At the same time, it is important for those with invisible disabilities to employ empathy themselves. I did not intend to scare Charlotte with my dark jokes about traffic, or to tune her out when she gave advice about specific social situations, but that doesn't mean what I did was OK. I owed her more than just an apology; I also owed her a promise that I would learn from my mistakes to the greatest extent reasonably possible. Being disabled also doesn't absolve one of moral consequences for one's own mistakes. One of my main criticisms of the popular TV show "Atypical," for instance, is how the main character would behave in cruel ways toward other people but be given an implicit pass. That is not OK.
I'm not going to say that I have all the solutions. More than five years after I first began writing about life with autism, I still find myself asking more questions than I answer. That said, I can't imagine that encouraging people to pause and think about how the people around them must feel is ever bad advice.