written by Lindsey Nebeker, with David Hamrick
[published in Autism Spectrum Quarterly , August 2009]
“If a young child, or the parent of a child just diagnosed with autism, was sitting in my seat across from you at this moment, what would you tell them? What is the message you’d like to give to this country? Now is your opportunity.”
This was one of the many questions I was asked during a recent interview by a reporter on ABC’s Good Morning America. The program had picked up on the March 2009 Glamour Magazine article about a romantic couple where both partners have autism. Dave and I are that couple.
My mind was blank, as I sat under a bright light, with a tiny microphone taped to the back of my collar; its wire running uncomfortably down the inside of my dress; and a large camera planted across from me. I tried to ignore the camera so as not to directly look into it. It was like a deer freezing up in front of a car’s headlights! The only thing that comforted me at that moment were the fuzzy gray socks—unseen by the camera—that I was wearing to keep my legs warm.
It was hard answering the questions that were thrown at me, like darts, in front of the TV cameras. However, those “darts” had rubber ends because the head producer in New York City had managed to get special permission from ABC to email Dave and me the list of interview questions a few days in advance. “Under normal policy, ABC News does not allow the subjects to know what particular questions will be asked. Not even the President of the United States,” the producer said. But she understood, through her experience of producing stories on autism, that subjects like Dave and I need time to process and prepare our answers to verbalize, effectively, the spoken word. Dave is much better at this than I am, however. I’m sure the evidence of that remains documented in the out-take reels stored indefinitely in the ABC vault.
THE ADVENTURE BEGINS
My adventure with Dave began nearly four years ago, at the 2005 Autism Society of America National Conference in Nashville, Tennessee, where I was living at the time. Dave was scheduled to give a talk about “Weathering Autism in Relationships” (Dave is a meteorologist!). When he saw the room he was going to speak in for the first time, he noticed that there were not enough chairs in the room to accommodate the number of attendees that were expected. So, he went to a neighboring breakout room to look for more chairs and saw me having a conversation with another young man with autism whose name was Joshua. He and Dave were already friends, and Dave came in and joined the conversation. The three of us stayed in that room talking for over an hour. We got to know each other pretty well.
Dave and I parted ways for a little while, and then we got back together and toured the exhibit hall. Dave introduced me to some of his other friends in the autism community, and then we hung out in the hotel lobby with a few other friends. Shortly afterward, I went home to my apartment in town for the night. I went back to the conference around noon the next day for one of the closing sessions, and I gave Dave a ride to the airport so he could catch his flight back home to Virginia. We gave each other a long hug goodbye, but no kiss. We had exchanged phone numbers and e-mail addresses, and we communicated via both means on a weekly basis or so for the next three months.
Through a good friend of Dave’s, Roxana, we saw each other again at an autism conference in Roanoke, Virginia. Roxana had invited both of us to be presenters, and we both gladly accepted! It is here where things get interesting. We both stayed at Roxana’s house, and we visited a local mountaintop lodge at Mountain Lake, Virginia. Towards the end of the trip, we went to a local bookstore together. It was at the bookstore, sitting at a table, where Dave placed his hands on mine, and I felt comfortable enough to let him hold my hands. It was at this moment when Dave asked if a relationship with me would be possible. At first, I was a bit confused by what was transpiring, but I also told him it was definitely worth trying out. He gave me a goodnight kiss that same night, and then I knew that romance was beginning to fill the air. He even gave me flowers before I had to leave for Nashville. The friendship that had existed between us had now proceeded to the next level.
LET THE “SYMPHONY” BEGIN
Since I love music and song writing, I would like to use the following analogy to characterize our relationship: Love between two people comes together to create a sound that is unique—an “Evolving Symphony”, if you will. Each “movement” varies in intensity, dynamics, and speed depending on the mood that the “composers” are trying to create (the composers being both partners in the relationship).
For those music enthusiasts, you may be aware of the long history of musical creations. It goes back to the beginning of human evolution. And the sky is the limit when it comes to how musicians have chosen to express themselves. Symphonies written in the Contemporary Era contain off-key chords and uneven beats. Yet when the symphony is heard in its entirety, the listener can learn to appreciate it. It won’t be pleasing to every listener, but then again, how enticing would life be if we all had the same thoughts?
There’s no need for couples in a relationship to fret over trying to mimic what they observe other “lovebirds” do. The goal here is to create a symphony that sounds harmonizing and pleasing to you. And, as long as each partner remains “in tune” to each other’s needs, the piece will continue to flow, no matter what “key” it falls on. This means checking in to determine what each other’s sensory violations are and preventing your collaboration from intruding on those violations. An example of one of these sensory violations is Dave’s strong aversion to gum chewing sounds. Therefore, I am respectful of this when Dave is around, and so I do this when I am alone.
OUR “WORKS OF ART”
There are some important components that contribute to a smooth collaboration. I refer to these as “works of art” that those of us with autism are actively trying to master. What must be present, first and foremost, is the art of attraction. Attraction should come naturally. Even that is instinctual in autism. If you’re not feeling the “sparks” and the fueling of “fire”, then a relationship is not worth pursuing. The desire must be there. The ingredients of our sexual chemistry are present and that is one of the things that makes our relationship so wonderful.
We both feel that respect is critical in a relationship. The rule is simple: respect your partner, and in return, your partner respects you back. I feel fortunate to have a partner who does just that—respects me for who I am. If a relationship comes to looking like a “one-way street”, it is time to back away. You do not have to agree with each other on your personal beliefs, but you will be more at peace with yourself if you make an effort to acknowledge that he or she is entitled to his or her own views. There is a beauty that exists in our differences, and it fuels creativity.
The most difficult component to creating a smooth collaboration, without a doubt, is the art of compromise. Dave and I were coming from two fairly rigid lifestyles, and we both had certain routines. Even though we easily discovered our common interests, our obsessions, rituals, and preferences often clash like night and day. Compromise will always be a “work in progress”, but it is an incredible teaching tool in strengthening a relationship. Dave loves me enough, and I love him enough to have stayed together as long as we have. It is approaching four years now.
People with autism who do have an interest in pursuing love may fear the chaos that may arise when they throw themselves into vulnerability and dependency in a relationship with another person. But chaos, in its own way, creates order. Think back to millions of years ago, to the origin of our galaxy, when chaos occurred out of a simple Supernova. Out came an unexplainable phenomenon: the order in our universe. How it came to be will be will be a question forever lingering in the minds of scientists and astronomers.
THE “PERFECT” SYMPHONY
What creates the “perfect” symphony? Practice, practice, practice! It’s what my instructors used to tell me all the time when I was a little girl actively involved in my classical piano studies. Often times, I hated hearing those words, because I was so stubborn in wanting to have things run my own way. So in my own self-centered mind, I felt like I was being forced to sit down in that piano chair. But I discovered that they were always right. My performances on the recital stage were well-received, and it became my source of confidence and strength. All the effort and time invested in practice was certainly worth it. Keep in mind, though, that perfection is relative, too—and a continuing work in progress!
You may be surprised by what I’m about to say, and what you are about to read. I don’t think that everyone is destined to be in a romantic relationship. There are many people out there who are perfectly content living alone and not having a romantic partner, and there is nothing wrong with that. As a matter of fact, before Dave came along, I had decided that I wanted to focus on having a good career and enjoying my friends, instead of actively searching for a romantic partner. However, I do believe that every one of us has the potential to live a happy life — one that is self-fulfilling as well as one that contributes to peace of mind.
There are parents who come up to me after my speaking presentations, expressing their particular concerns about how their child or teen will turn out when they blossom into adults. I tell them, “It doesn’t matter where in the autism spectrum he or she is. Your child has a place in this world”. I know that Dave and I have found ours.
Photo credits: Gordon Nebeker