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.