David likes to make people laugh: he performs a very convincing imitation of Dustin Hoffman’s deadpan delivery in the classic Hollywood film “Rainman.” “Rainman,” in fact, provided David’s only image of an autistic person when, three years ago, he learned that he had “symptoms consistent with Asperger’s Syndrome.”
His diagnosis was a startling revelation. “I didn’t expect the neuropsych guy to find anything,” he remembers. “I always knew there was something different about me, but I thought he’d say ‘You’re a little off-kilter, David.’” But when David sent his parents a print-out of information about Asperger’s from the AANE website, their reaction was “Ohmigod, David, this is dead on. Your picture should be up here!”
He laughs about it now, but coming to terms with his diagnosis, and his mix of strengths and limitations, hasn’t always been a comfortable journey. He has alternated between denial of his diagnosis and the other extreme “where I started to define myself as somebody with AS, not David—‘Mr. Asperger’s.’ ”
David is 36, holds an advanced academic degree, and now considers himself “almost neurotypical” or “NT.” But that “almost” complicates both his professional and personal lives. “Sometimes I think if I just swim out to the horizon maybe the gulf is not that big—I can do it,” he says. “The horizon’s not that far. But you keep swimming and swimming and I’m further than I think I am, or further than I want to think I am. It might be easier to be more disabled, then you wouldn’t know how tantalizingly close you are! I have a friend who is a dentist, a few friends in computers, and they all have real professional jobs. I get along with people who are basically NT, and they really like me. They don’t like me because they have sympathy for me—they really like me.” It saddens him that he is not able to have the type of life his friends take for granted.
Nevertheless, David is resilient—a survivor with a remarkable ability to learn, and to grow in self-awareness. For the last few years, he has worked primarily in grants and contracts management for nonprofits. Over time, he has learned to recognize his strengths and limitations—the nature of his “learning curve”—and apply this self-knowledge to the world of work.
“Every time I have a new job,” he explains, “the biggest problem is that I always feel like I should know things. At the beginning it’s easy to ask questions, because I’m not supposed to know anything. Even if I have experience in the field, I don’t know how they do it. I learn fast, I go up the curve—but other people keep going and I plateau a lot faster.” As the job becomes more routine “it’s hard for me to ask questions because I feel like I should know the answer. My boss is so busy, I always feel like I’m wasting his or her time asking a question I might be able to figure out. My current boss likes the work I am doing, but with that comes more independence.”
Some of the problems come with being too literal. “I’ve had to learn that when people say ‘I need this now,’ it means it should be a priority—not that you have to drop everything. My boss doesn’t mean right now—it’s a euphemism.”
“I have to constantly slow myself down. It’s like a motorcycle, I want to get into 5th gear and fly down the highway. I have to stop myself, and be more disciplined, and downshift. I have to stop, reflect, and it’s grueling having to constantly hold myself back. So I’m always beat mentally when I leave work.”
Nonetheless, David knows that he is intelligent and does good work—and that he has a lot to offer to an organization if he finds the right supervisor and working environment that will give him the support he. He compares himself to a pearl hidden in an oyster. “People might have to spend a little more time with me, giving me feedback, writing down instructions, spending a little more time at the beginning. But if they are willing to take the time and pick through the oyster, in the end they’re going to find the pearl. The pearl is me, who has integrity and is a hard worker: dedicated, loyal, resilient, intelligent.”
David finds that disclosure is “easily the single biggest issue I have to deal with.” He feels he made a mistake at a number of preliminary interviews by disclosing that he has Asperger’s Syndrome before he landed the job. However for him, disclosing is going to be essential once he has been in a job for a while, and has demonstrated that he is a valuable worker. With temporary jobs, disclosure has not been a significant issue. But as his tenure in a job grows, and supervisors expect that he will no longer have many questions about how to do things, he has to disclose his diagnosis—and explain what Asperger’s is—in order to forestall a supervisor becoming impatient and irritated at continuing requests for explicit, written instructions. “It’s always the easy way out not to disclose. But … I’ve seen that if I don’t disclose, I risk losing my job. So it’s a pretty strong incentive.”
David has developed a number of strategies for helping to organize his life. He says that AANE’s “Where Are My Socks?” course (led by Susan Shamus in spring of 2003) really helped him. “I have a really good memory and I like to rely on it,” David says. “It’s the random, disparate things that are hard for me. The program helped me crystallize that if something has steps I can write them down. But… [I end up] having 25 different answers to 25 different questions on eight different topics on a single 8 ½ x 11 piece of paper! 3 x 5 index cards may be the way to go for me.”
David owns his own home. He loves the freedom of living alone, although he reports that his parents consider him a slob. “I can cook a little bit. I keep it real simple: grill up a piece of salmon or a burger, pasta or nachos.” He has been involved in an activity club whose members go to wine-tastings, restaurants, baseball games, and the theatre. His attempts to date and find a girlfriend have been disappointing so far. “All my dates are ‘one and done.’ They go so well on the phone, but when we meet in person it just flops, every time. People say “Why are you being so negative?” I say, I’m just being realistic. I’ve been down this road a lot of times—I know where it leads. I’m trying to modify my personal behavior just like I’ve modified my work behavior. But it’s a lot harder because you go to work every day—you don’t get a date every day!”
Nonetheless, David believes that the life-long challenge of living with Asperger’s is something he is prepared to face. Each month, each year, he makes progress, and luckily he have a good support network. His parents and his therapist let him “bounce things off them.” Recently he has begun to give talks to groups of clinicians and others interested in Asperger’s Syndrome, in the hope that sharing his story will help other people who were diagnosed with Asperger’s as adults.
“I had to learn that instead of going through a brick wall, I had to take a couple of steps back and look around and ask: Can I go around the wall? Maybe there’s a rope I can grab and go over the wall…but I can’t just walk straight into the wall and think that things are going to change. I need to make some adjustments because I can’t make Asperger’s go away. I have to learn from my mistakes and be a little more creative and be more self-observant.”
Despite his struggles, David thinks that for himself, and for other adults with AS, things can only get better. “I think of myself as high on the continuum,” David says. “My advice to my Asperger’s peers would be: just try to hang in. There’s a lot of us out there. Asperger’s puts me in this category with all these other people and we all have to do our best with the cards we were dealt.
“Asperger’s is the diagnosis du jour and it’s getting a lot more influence and attention now. We’re kind of on the ground floor of something that is going to be really big. Everyone wants to do something to better the world and I kind of think of this as what I’m trying to do. I’m trying to help. If I can be a role model for people, that’s great.
“There’s no magic pill—believe me I wish there was—but as people do more research, and Asperger’s gets more into the limelight, it is going to get easier. This was the hard part. The more you learn about it—once you decide to face it head on, which is what I recommend—you can know there are people out there who have jobs, who have girlfriends. It’s quality of life. If God gives you oranges do you want to throw them at him—or make orange juice?” David laughs aloud. “I’m trying to make orange juice.”