By Teri Borseti
Ron and I didn't find out that our only child, Adam, had Asperger's until he was 13 years old. We were amazed that all of his odd quirks could be connected to one diagnosis. Knowing what was going on with Adam was a relief but it was also a difficult reality to accept. According to the Mayo Clinic, Asperger's syndrome is a developmental disorder that affects a person's ability to socialize and communicate effectively with others. Doctors group Asperger's syndrome with other conditions that are called autistic spectrum disorders or pervasive developmental disorders. Children with Asperger's syndrome typically exhibit social awkwardness and an all-absorbing interest in specific topics.
That was true of Adam. He's musically gifted and great with computers. With the help of an advocate and psychiatrist, we got him placed in a special program for kids on the spectrum. Yet when Adam was in high school, he used to say he was so afraid he would end up like some of his friends after graduation. They had left the comfortable cocoon that the school provided for them for years and entered a world where everything was completely different. Asperger's kids need sameness and routine. Many also have sensory sensitivity. And they learn differently than most kids do. Most of them found that there was little guidance available to help them learn how to get to the next level. The lucky ones went on to colleges that offer special education programs, but for the most part, as is typical of these 18-year-old kids, they tried one or two jobs in retail or fast food, got discouraged, and stayed home.
Regrettably, after my son graduated from high school three years ago he did join the ranks of those who stay home. He played music all day. There are so few services available to kids like Adam. They really need a bridge to independence, and building one isn't something parents can do alone. We looked for special ed job training programs but we were unsuccessful. The Massachusetts Rehabilitation Commission helped Adam put a resume together but was unable to offer much beyond that.
In addition, my son was refused Social Security Disability Benefits even though it's clearly his disability that was causing him to be unemployed. But Asperger's Syndrome isn't something that can be seen. In fact it would take someone a while to realize my son is any different from other kids his age. One of the most difficult challenges for victims of Asperger's Syndrome is that unlike other afflictions made obvious by the use of a white cane or wheelchair, glasses or a hearing aid, Asperger's has no obvious clues. Because the problem exists on the inside, it’s easy for others to judge these people before they really understand their condition. Those with Asperger's are often mistaken as being lazy or stupid. It isn’t uncommon for them to make an inappropriate comment at the worst possible time and they’re often ostracized by their peers. Teachers who didn’t recognize our son’s learning issues in middle school often treated him as a disciplinary problem.
Although Ron and I were both very proud that Adam graduated from high school, he was becoming stagnant as the days and months went by and he was still unemployed. His self image was very poor. Yet despite the dreadful economy, he looked for jobs every day. He tried working at McDonald’s but the sensory overload and constantly busy atmosphere was a problem for him. He then went to work for Stop & Shop but he was fired after a month because he "wasn’t learning fast enough.” He was incredibly distraught and discouraged about that but his music was his salvation. Over the past three years he’s spent much of his time creating songs of every genre in his in-home studio. He was even contracted to create keyboard sound bites for a European company. But while everyone he knew either went off to college or got a job, he felt terrible about his situation.
Unfortunately his story isn’t unique. Being an Asperger's child is tough but it can be even tougher when it’s time to make the transition to adulthood. The majority of Asperger's patients eventually find ways to cope and many go on to find their place in life. But even as adults they can still be uncomfortable in social situations or have difficulty following a set of directions.
It’s extraordinarily difficult for parents to watch their child experience one hopeless day after another. And we’ve learned that all the rules that apply to typical kids don’t work for Asperger's kids. Our son is now 21. He has his license and a car. But what we all really wanted was for him to find a job, feel successful, and generate some income.
Then about a month ago, Adam's job hunt finally paid off. He was hired by Radio Shack. So far so good. He enjoys the tech talk and seems to be in his element. He feels good about himself and that means more to Ron and me than anything else.
Parents of Asperger's kids, don’t despair. It gets better. With support, patience, and a positive attitude, they eventually find their niche. It just takes them a little longer to get there than others.
Teri Borseti has been a freelance writer for over 20 years. Her byline has appeared in numerous publications including The Boston Globe, Ocean Home Magazine, Boston- Common Magazine. She is also the author of “Memories of Maverick”. Please visit http://www.teriborseti.com/