When you first meet Tom Inguanzo, you notice he is polite, yet reserved or maybe a little shy.
His movements and conversation are tentative, as if he is treading carefully. He is.
Inguanzo, 41, has Asperger’s Syndrome, a high-functioning form of autism. He says he is trying to compensate for a lack of social skills that have plagued him for most of his life. Despite an impressive intellect and a strong desire to be liked, failure to use the strategies he has learned since being diagnosed 10 years ago can lead to disastrous gaffes, excessive talking and quirks that set him apart from those around him. Other symptoms include anxiety, depression and difficulties with planning.
Intensive communications therapy and psychotherapy have helped. Inguanzo now has friends, a modest social life and has returned to college. He is an accounting major at Florida International University, and speaks at schools to children with the disorder. Inguanzo, who lived on his own in Michigan for about five years, lives at home with his parents Yolanda and Tomas.
“I’m not where I want to be,” he says, “but I’m much better than I was.”
If you don’t have Asperger’s Syndrome or you’re not one of the estimated millions of Americans who have a child, a spouse, or a friend with a form of autism, chances are your introduction to the condition may have been through television shows, movies or news and social media. Temple Grandin, named one of Time Magazine’s 100 most influential People of the Year in 2010 and subject of an HBO movie, has written about the challenges of having it, along with Tim Page, the Pulitzer Prize- winning music critic for The Washington Post.
Last month, media around the country reported that Adam Lanza, the 20-year-old who shot and killed 20 first graders and six adults in Newtown, Ct., before killing himself, may have had Asperger’s. Experts and advocates say that reports about Lanza added confusion to an already murky public understanding of autism and mental health issues in general, and unfairly stigmatized autistic people, who are far more likely to be victims of violence.
Greater understanding is critical, they say, given the statistics. The Centers for Disease Control and Prevention estimates that one in 88 children and one in 54 boys in America have some form of autism. There are no estimates of how many of those with autism have Asperger’s.
“This is a group that really suffers in a lot of ways,” says Dr. Diane Adreon, associate director of the Center for Autism Related Disorders (CARD) at the University of Miami School of Medicine. “As they get older, they’re often aware of the fact that they’re struggling to fit in. Sometimes they act like they don’t care when really it’s hard to persist at something that you’re not meeting success with. They’re often the targets of bullies. They may go through the school day without causing trouble for anybody, but it doesn’t mean that their social isolation isn’t really setting them up. This population is at an increased risk for anxiety and depression, and it’s a serious condition,” said Adreon, co-author with Brenda Smith-Myles of the book, Asperger Syndrome and Adolescence: Practical Solutions for School Success.
There is no relationship between Asperger’s or autism spectrum disorders and violence, Adreon says.
“This population is very rule based, very law abiding and rule abiding.”
However, she says, a person with Asperger’s might also have another disorder with symptoms that can make the individual more prone to aggression.
Adreon also cautions that the intellectual capabilities of many people with Asperger’s can lead parents into denial about the challenges.
“One of the largest studies showed that 10 percent of the people with Asperger’s tended to have superior or above superior IQs, in comparison to 3 percent of the general population,” she says. “With some of those individuals you’d have to get to know them well before you could see any signs of autism spectrum disorders, while in others it would be obvious the moment you meet them. That’s how variable the disorders are.”
While some people live independently, have careers, marriages and children, others do not, depending on the mix and severity of symptoms and the treatment they receive. Many of her patients live with their parents into adulthood, and find workplace interactions and social situations challenging. Many go undiagnosed. Early intervention and therapy and training can make the difference, she said, but most people cannot afford such intervention.
A late bloomer
Ramon Matos, 44, would one day like to live on his own, have a car and ultimately marry. He now lives at home with his parents.
“I’m the ultimate late bloomer,” he says smiling. He is dressed in a bright gingham shirt and jeans, and wears hip rectangular eye glasses. Matos, who is friendly and personable, speaks without reservation, and with little filter or breaks in the conversation.
Diagnosed with Asperger’s, he converses easily about his life and struggles as a child who was punished repeatedly for behaviors he did not have the skills to control. After he was asked to leave an elementary school, he says, his mother searched for ways to help him. She still has an accordion file of resources and services, he says.
At the University of Miami, he says, he struggled with a major in broadcast journalism, and he says was almost asked to leave when he made inappropriate comments to another student. After college, he was unable to get a job in his field.
Today, he is proud of his work as an assistant manager of ValueStoreIt locations in Miami, where he has worked for the past two years. He got the job through a CARD program that helps people with autism find employment.
David Finch, author of The New York Times bestselling book, The Journal of Best Practices, A Memoir of Marriage, Asperger Syndrome and One Man’s Quest to be a Better Husband, also has the disorder.
Finch, 35, who grew up and still lives in northern Illinois, always knew he was different. But he developed strategies that worked — an example of “executive functioning,” which many people on the spectrum lack. He learned to keep quiet, and use humor. Making people laugh at the right time won him friends, and kept the focus elsewhere, he said. He also learned to mimic the behaviors of his peers to fit in, and was bullied no more than anyone else. He attended the University of Miami from 1995 to 1999, earned a bachelor’s degree in engineering and built an engineering career.
Along the way, he had met and married his wife Kristin, a speech therapist, who worked with autistic children. Finch says once he was married, he could no longer rest at home after compensating all day long. His marriage was falling apart. His wife began to notice similarities between some of his behaviors and those of the children she treated. When she began to work more with children with Asperger’s, she saw the connection and encouraged him to look for answers. Finch received a formal diagnosis in 2008.
The diagnosis helped both Finch, who could better understand himself and begin to address the issues, and his wife, who then realized the daily challenges that began for him in childhood.
“In elementary school it occurred to me that all the other kids knew how to play together and they actually seemed to enjoy playing together on each other’s terms,” Finch says. “I didn’t know how to go about doing it.”
Finch said he found characterizations of people with Asperger’s disturbing, following the Newtown shooting.
“I even heard some people in the media saying such baseless things as this is a population that lacks empathy, lacks a conscience,” he says, which brought back memories of middle school. “I would see other kids who were having a more difficult time, who were the object of ridicule being singled out. I could have joined in and elevated my social status It broke my heart for these kids, because they didn’t have anybody. Sometimes I felt like I was the only one with a conscience,” Finch says. “Where was the empathy among them?”