Group responds to rising autism rate
By Marjorie Wertz
FOR THE TRIBUNE-REVIEW
Monday, November 1, 2004
Fraternal twins Connor and Mackenzie Baker don't understand jokes, sarcasm or the subtleties of social interaction.
Mackenzie didn't speak until he was nearly 3 years old; while Connor was the exact opposite: screaming loud and often.
The Greensburg boys were diagnosed as high-functioning autistics when they were 5 years old.
"It was their behaviors that led to the diagnosis," said Deb Carpenter, the twins' mother.
There is no blood test or screening that detects autism, a spectrum disorder that includes autism, Asperger's syndrome, and PDD-NOS or pervasive development disorders not otherwise specified, said Howard Carpenter, Deb Carpenter's husband and the stepfather of Connor and Mackenzie. Howard Carpenter is the executive director of Aboard Inc., Advisory Board on Autism and Related Disorders.
"Autism is a neurological disorder. The cause is not yet known and there is no cure," Howard Carpenter said. "Most kids who are diagnosed with autism appear normal. Some time over the course of their early years, they begin to regress, lose their speech and begin to manifest severe impairments. They have social interaction problems and tremendous sensory problems.
"The bottom line is when a psychiatrist or a medical professional diagnoses the child, it is done through visual observation and the behavior history they receive from the parents."
All children with autistic spectrum disorders display deficits in social interaction, verbal and nonverbal communication, and repetitive behaviors or interests.
They do not follow the typical patterns of child development. Often, children with autism will have unusual responses to certain sounds or the way objects look. Symptoms will present differently in each child.
"It is the third most common child disability today. It trails mental retardation and cerebral palsy. It is four times more common in boys than girls," Howard Carpenter said. "For every 149 normal babies born, one will have autism. The rate today is 15 times higher than a decade ago."
Connor and Mackenzie, now 11, are in fifth grade. Connor attends Brighton Day School at Pressley Ridge in Pittsburgh. Mackenzie is a student at Bovard Elementary School.
"The boys are obsessive. Mackenzie is a facts kid. He likes facts and likes to read factual books on birds, birthdays, presidents. For Connor, life is very hard. He has a hard time with eye contact and joining with other children even when he wants to," Deb Carpenter said. "They don't know when they are being annoying. Because they don't get subtleties, you have to be very cut-and-dried when speaking to them."
Mackenzie is more socially functional. The youngster learned some social behaviors while attending summer camp. Connor, Deb Carpenter said, does not function as well socially.
"Connor becomes aggressive verbally and sometimes physically. Mentally and emotionally, he is at the second-grade level," she added. "The biggest challenge for us right now, and the most frustrating, is getting them to be like other kids."
In Pennsylvania alone, there are more than 74,000 individuals diagnosed with autism. Aboard Inc. is a Pennsylvania-only organization with more than 10,000 members, most of them from western Pennsylvania. One of the goals of Aboard is to provide training workshops for parents, teachers and therapists to raise awareness of autism.
Rebecca Klaw, director of the Center for Autism at Pressley Ridge, Pittsburgh, conducted a seminar Oct. 23 at Westmoreland County Community College, on Asperger's syndrome and high-functioning autism.
"In Asperger's syndrome, the child fails to develop peer relationships, lacks spontaneity and has a lower desire to share things with others," Klaw said. "They also have a repetitive pattern of behavior and an abnormal interest in a single subject or object. But this interest could be seen as a characteristic or gift in an Asperger's child. There were many people who were geniuses but socially inept, including Albert Einstein."
Asperger's may not be diagnosed until elementary school because there is no language delay, as is evident in other autistic children.
"Children with Asperger's have difficulty deciphering body language and facial expressions. Playing is very hard for them, because playing involves constant sharing and flexibility," Klaw said. "Playing requires loyalty to friends. Children with Asperger's aren't connected to the friendship, but to the activity itself. Children with Asperger's syndrome don't really care to be like others, so they don't bend to peer pressure. However, they don't want to be ridiculed."
Additionally, Asperger's children appear to lack empathy and can be rude or tactless. They have unusual sounding speech that can be too loud, too soft or lacking inflection. Sometimes Asperger's children use words that are too advanced for their age.
"Ten years ago children with Asperger's used to be diagnosed as schizophrenic, because the children would start talking about something completely irrelevant in the doctor's office," Klaw said.
"We are striving to reduce the length of time before diagnosis," Howard Carpenter said. "Delivery of therapy must begin as soon as possible, so the child can learn to speak and learn how to interact with others. The whole idea is for that child with autism to grow up to be an independent adult."
Anti-anxiety medications may be prescribed if the child's anxiety is so acute that it limits learning. Most professionals agree that children with autism respond well to highly structured, specialized therapy programs.
"There is a consensus within the scientific community that autism has a genetic root," Howard Carpenter said. "What researchers are focusing on is what is triggering that genetic root. There is something triggering the manifestation of autism, whether it's vaccines, diet or the air. This disorder was ignored for so long. There has to be more research and there has to be care while we're waiting for a cure."
Deb Carpenter worries about her boys' future.
"A high-functioning autistic can function in society. There is hope. Mackenzie will be fine. Connor will not," she said.
Group responds to rising autism rate - PittsburghLIVE.com
