November 2011

With crowds of Portland fans, talented “Aspie” Regina Lucchese has discovered applause in her uncharted darkness.

By Jeanee Dudley

“When you say ‘autism’–for anybody who grew up in the time of Rain Man–that’s what you think of. That’s what it looks like. Well, it really doesn’t look like anything. I mean, it looks like me, too.”

Regina Lucchese of Portland is no Rain Main. She’s sharp, good-humored, and driven. And she’s cute! Growing up, she says, “I was a gifted child. When I got my diagnosis, my parents were like, ‘That can’t be it. Look at everything you can do!’” The teacher, choir director, recording engineer, and professional musician was, until April of this year, one of possibly millions of American adults living undiagnosed on the autism spectrum. “Besides my B.A. in elementary education, I have a degree in medical transcription,” she adds. “Writing music, though, that’s the one thing I just know–I’m supposed to do something with it.”

Regina’s diagnosis is high-functioning Asperger’s syndrome. Identifying Asperger’s and autism is a complex process, but “Aspies,” as she lovingly self-identifies, are often characterized by a difference in social behavior. “People with Asperger’s often look and act younger than they are,” she explains. “It’s like being caught in a teenage limbo. I don’t understand what it means to ‘act my age.’ Like sitting around with a bunch of soccer moms? You just put me in a foreign country where I don’t speak the language.” Social niceties like small-talk don’t appeal to Regina.

“People with Asperger’s are built to be codebreakers. I focus on details more than the big picture. That kind of chatter-talk, it’s everywhere, and it can be really overwhelming.” When Regina worked as a teacher, she would spend her lunchtime outside reading a book instead of in the teachers’ lounge with her co-workers. “People didn’t understand why. And this was before I had a diagnosis–I just didn’t have the language to explain that the chatter-talk was just over-stimulating. Everyone just thought, ‘Oh, she’s too good to eat lunch with us.’ But really, I just couldn’t sit there with so much going on.”

Social living is a little easier for Regina now that she can explain what she doesn’t understand and why. Some things, however, will never be easy. “I don’t know how to perceive if people are trying to be friendly or have bad intentions. It’s harder to determine who the genuine people are–I just don’t read between the lines. That’s been one of my biggest challenges: making and keeping friends.”

Her entire life, Regina bounced between social circles, mostly, she speculates, because of her “quirks.” “I have hyper-sensitivity to sounds, smells, and textures. In high school, I developed a clothing style based on comfort. I didn’t relate to looking cool, wearing jeans. I would wear these long, flowered dresses. It never occurred to me that I didn’t look cool. I mean, we weren’t well-off, but I lived in a wealthy area in New Jersey. There were kids who drove to school in Porsches. Bon Jovi’s brother went there, and I looked like something that emerged from Little House on the Prairie. Popular boys would ask me out but tell me to keep it a secret.”

People on the spectrum come up with ways to deal with the social alienation. Regina’s coping mechanism helped with her work in theater. “It takes an incredible amount of energy to be the character who everybody loves and finds acceptable. I had bulimia when I was eight years old. You’re just trying to be perfect while internally your life feels out of control. All of my eccentricities were chalked up to being a ‘gifted child.’”

The spectrum is full of uncharted darkness. “It’s not always the triumphant world of autism that is publicized like in Lifetime movies.” And it gets worse with misdiagnosis or a complete lack of diagnosis. “There is a lot of substance abuse on the spectrum. The world just misunderstands you so much, and you are socially and sensorially overwhelmed. Everyday existence is just full of this incredible level of anxiety and tension that people try to self-medicate and fix.” Regina believes that through diagnosis people can get some relief. “Just being able to say, ‘Hey, I have Asperger’s syndrome. I don’t always get how to be a grown-up, but I get how to compose music and dance,’” alleviates some of the stress.

High-functioning Aspies are everywhere. It is speculated that Mozart, Emily Dickinson, Mark Twain, Jim Henson, and Regina’s favorite, Michael Jackson, were all members of the club. “I truly believe he was a kind-hearted person who didn’t understand how to be an adult. It’s not that we don’t want to grow up; we just don’t always fit adult life. I don’t think Michael Jackson was ever diagnosed in his lifetime–but it really explains the Peter Pan syndrome. At the same time, his Asperger’s is what made him such an incredible performer.” Regina and Michael both share an unusual drive and a knack for character performance. “I composed for the school musical in fourth grade, and I wasn’t considered as nerdy as I felt because I was able to express myself in a way that showed confidence. When Michael Jackson was on stage, he knew exactly who he was.”

Regina and Michael aren’t the only professional performers on the spectrum–even in Portland. “I know there are other people like me. Letting people know that I’m a musician who is an open Aspie was my door to walk through.” And it isn’t easy. She feels the stigma that surrounds the spectrum and knows the fear that inhibits her “closet Aspie” colleagues. “I have met another musician whom I recognized immediately as an Aspie. I was excited, and I said, ‘Hey, I have Asperger’s, too!’ He just looked at me like I was crazy.”

Despite the struggle to gain acceptance, Regina remains hopeful about the public’s perception of others like her. “We don’t need to feel like we’re living on the wrong planet. That’s why it’s so important to raise awareness. Others do have the compassion to understand differences. It’s not bad, it just is. It’s about decreasing judgment.”

>> To listen and watch Regina Lucchese perform her music, visit youtube.com/user/reginalukz.