Parents of children diagnosed with autism spectrum disorder (ASD) often are frustrated, confused and scared. Healthcare professionals who treat ASD patients are also challenged. Peter Mazure is both. He is the father of a 28-year-old who suffers from ASD and also is a retired clinical psychologist.
“I understand why parents are the way they are. This isn’t just a clinical issue. It’s a personal issue,” he said.
After receiving a master’s degree in clinical psychology, Mazure worked several years as a psychologist. He decided to switch careers and worked in human resources in the banking industry. But, years later, after his son was diagnosed with ASD, Mazure returned to the field in which he had received his formal training. Mazure worked in Richmond at the Grafton School, which is for children, adolescents and adults with complex behavioral health challenges. He also worked at the Chesterfield County Community Services Board, which offers behavioral health and developmental services.
“Saying a person is autistic conveys a misconception and is confusing because it is not one specific disorder--hence the term autism spectrum disorder,” Mazure said. Many people on the autism spectrum with less severe limitations feel there is nothing wrong with them. “They feel they are just different,” and don’t require treatment, he explained. Those toward the opposite end, like Mazure’s son, Steven, may see only marginal results from treatment. “He doesn’t have a full life, and he knows that, and it bothers him,” Mazure said of his son.
ASD symptoms usually appear around age 2 and often limit the person’s ability to function properly in school, work and other areas of life, according to the National Institutes of Health (NIH). Treatment and services can improve a person's symptoms and ability to function. The rate of ASD diagnosis has increased significantly in recent years, but the reasons are not clear. The Centers for Disease Control and Prevention (CDC) recently released a report on autism rates.
“There is no doubt that having better diagnostic methods is one reason but there probably are others, and we don't know what they are,” Mazure said. “The classic mark of ASD is the inability to communicate effectively,” he added, emphasizing that communication includes not only speaking but also listening and processing information. “Many ASD sufferers can speak but have difficulty communicating. They may only repeat words they have heard others say, but that's not communication.”
Mazure and his wife were “devastated” by the ASD diagnosis. “I knew what it meant. It’s a harsh diagnosis. As parents, you have dreams for your child, and you realize that those dreams may never happen. You are desperate for a cure. All parents are.” But, as of now, there isn’t one. However, Mazure said ongoing research might offer hope for better treatment.
About a year ago he made the tough decision to place his son in a group home in Richmond. Steven attends a day program called Branches of Life, which offers activities such as computer classes, bowling and job development and sleeps five nights a week at the group home.
Planning for unexpected emergencies presents a new set of challenges. Mazure and Steven travel regularly and are planning a plane flight to San Francisco to visit Mazure's younger son. Airplane flights present special challenges for those with ASD. “I stuff his pockets full of information in case something happens and someone else needs to help him. I also let the flight attendants know about his condition,” Mazure said.
Speaking as a parent and a clinical psychologist, Mazure has advice for anyone encountering someone with ASD.
Speak in a normal volume. “My son has very good hearing but loud talking makes him uncomfortable.” It actually inhibits communication, Mazure said.
“Be patient.” Someone with ASD needs time to process information.
Never assume that someone with ASD is of low intelligence or has little mental activity. “There may be a lot of thinking going on, but they can't communicate it. Steven reads on a wide variety of subjects and sometimes laughs when he reads. Finding humor in something demonstrates a fairly high level of thinking,” Mazure said.
In the case of an adult with ASD, speak to him as an adult, not a child. “I say ‘him’ because ASD strikes many more males than females.”
“Hands off,” Mazure said. Many children and adults with ASD are touch-sensitive.
“Be consistent” and give clear directions. Many ASD patients have a rigidity of thinking and don’t understand why it may be acceptable to do something in one situation but not another.
Lack of eye contact doesn't mean the person isn’t listening. Someone with ASD often turns away from the speaker but hears every word that is said.
Mazure emphasized that, although there is no cure, people with ASD can change. Steven would never talk on the telephone, but when Mazure was hospitalized for surgery, Steven agreed to speak to him by phone. Steven now regularly talks with his father by phone. After the first phone call, Steven told staff members at the Branches of Life program that he wanted to take care of his dad. “That brought tears to my eyes.”
An excellent resource for parents of children with ASD is Sesame Street’s new website “Sesame Street and Autism: See Amazing in All Children.”