Tuesday, December 10, 2013
Peggy Schick of Topsham was furious when she heard early news reports describing the Connecticut school shooter as having Asperger's syndrome.
Peggy Schick of Topsham, whose son, Wyatt Luke, was diagnosed with Asperger’s syndrome, says stories linking the disorder to the Connecticut school shooting are based on misinformation, a sentiment echoed by advocates nationwide.
John Ewing/Staff Photographer
WHAT IS ASPERGER’S SYNDROME?
ASPERGER’S SYNDROME is an autism spectrum disorder, one of a distinct group of complex neurodevelopment disorders characterized by social impairment, communication difficulties and restrictive, repetitive and stereotyped patterns of behavior.
Source: National Institutes of Health
"It made me sick as soon as I heard it," said Schick, whose 16-year-old son was diagnosed with Asperger's, a mild form of autism. "People who aren't informed about autism are thinking, 'Oh! That's it! That's why this happened.' (But) it's like saying 'He was tall,' or 'He had red hair.' It's an irresponsible, uninformed response."
Later media reports added caveats or quoted autism experts saying that people with Asperger's are not prone to violent behavior, but for many advocates, the damage was done.
"It makes ASD (autism spectrum disorder) kids all of a sudden cast in the light of homicidal crazies," said Mark Wilson, who has a grown son with Asperger's living in the Lewiston-Auburn area. "These kids have a hard enough time. (People) really need to focus the anger and the action on the right problem -- access and treatment for health care -- not just find a group of people to blame and chase them around with pitchforks."
The Maine Autism Alliance and the Autism Society of Maine both put out Facebook statements cautioning against linking the shootings to Asperger's and provided links to statements from the Autism Society. Parents of Asperger's children flooded Facebook and Twitter with outrage in the hours and days after a 20-year-old man killed 26 students and school staff on Dec. 14, condemning the label on the shooter and how the media handled the story.
Advocates want to dispel any notion that a person with Asperger's is any more inclined to commit an atrocity like the Connecticut massacre than any other person.
"There is no research that shows a link between Asperger's and planned, violent behavior," said Dr. Elizabeth Laugeson, a licensed clinical psychologist and an assistant clinical professor at the UCLA Semel Institute for Neuroscience and Human Behavior.
A person with Asperger's may become frustrated and act out in the moment, but there is nothing to indicate he would act in a planned, calculated way like the school shootings, said Laugeson, who does research on Asperger's.
Asperger's can be characterized by poor social skills and an inability to read people or social situations. Unlike other forms of autism, Asperger's does not typically involve delays in mental development or speech, according to the Centers for Disease Control and Prevention.
As a diagnosis, it's about to go away entirely. This month, officials decided to drop the term Asperger's from the diagnostic manual used by the nation's psychiatrists. Instead, Asperger's will be incorporated under the umbrella term "autism spectrum disorder" for all the ranges of autism.
About one in 88 children in the United States has autism or a related disorder, according to the CDC.
For parents, linking Asperger's to the shooting undoes much of the recent progress in Asperger's becoming more widely understood.
"I was afraid this would give people the validation they needed to continue to bully my son," said Paula Gentilini, 40, who works at a retirement community and has a teenage son with Asperger's. "We already moved school districts because he was the victim of bullying. People don't seem to have the compassion for people with (autism) as much as, say, Down syndrome."
Many families noted that the killer's mother apparently removed him from school, home schooled him and did not talk about any problems, although others who came into contact with the boy said there were clear signs of extreme social awkwardness. They recognized their own struggles with getting the right fit for their child at a school, or the isolating nature of caring for a child with Asperger's.
"We've been dealing with people not understanding my son for 10 years now," Schick said. "It takes patience."
Her son, Wyatt, has come a long way from being diagnosed as a young child. Today he has great grades, is learning Chinese and takes karate lessons. He loves puzzle games and hopes to one day design video games.
Meeting a stranger recently, he spoke at length, a bit haltingly but comfortably, about a range of topics while making eye contact and the occasional wry joke.
"I have all of the advantages of it," he said, referring to his high IQ and ability to focus, "not the disadvantages of it."
At this point, he and his family hesitate to say he has Asperger's, although they acknowledge it took that diagnosis and the hard work of managing that condition to get Wyatt to where he is today.
But it's worth it, said his father, Keith Luke.
"I've seen my own child grow through it and become a very successful, honor roll student," Luke said. "I'd tell other people going through it that it's not hell ... try to relax. There's a lot of good news."
Since the shooting, Laugeson said, her patients tell her they worry their children will be associated with the shooter.
"A lot of parents have expressed concern that their children will be viewed as monsters," Laugeson said. "I don't think the (Asperger's) is associated. There are probably plenty of other explanations for what happened in Connecticut."
Much of the medical care surrounding a person with Asperger's is teaching the child skills to essentially adapt to the condition, such as coaching him on how to respond in certain social situations or thoroughly explaining why people act a certain way -- smiling, crying -- since it's not something someone with Asperger's intuitively understands.
The other part of accommodating a child with Asperger's is educating the people in his orbit -- and by extension the general public -- so people understand why a person with Asperger's behaves the way he does.
"There's nothing in the diagnosis that's about violence," said Dania Jekel, executive director of the Asperger's Association of New England. The group has about 1,000 members in Maine. "When something like the shooting happens and it's associated with Asperger's, it's very, very hard for our community."
Jekel said many adults with Asperger's have "taken on that identity -- they're proud of it."
Now they're scared that if they're looking for work they won't be hired, or if they're working, people will be scared of them.
"It's the same in middle school or high school. They've come out and said they have Asperger's and now they're scared that people are worried about them or think they could do something like that."
The shooting will likely spark that fear, said Monique Meyers, who provides private consulting to families dealing with Asperger's and runs an Asperger's parents support group in York County.
"We tell them it's OK to talk about (having Asperger's) and you put yourself out there, and now everyone is going to look at you like you're a potential killer," said a frustrated Meyers, who has family members with Asperger's.
Schick said she worries that her son will take away the wrong message from the shooting stories.
"It makes me worry that he's going to think that he's more prone to violence," Schick said. "He has enough to contend with, and now he has this to contend with?"
Bruce Thompson, associate professor of psychology at the University of Southern Maine, said it was human nature for people to latch on to the idea that the Connecticut killer had something "wrong" with him. Thompson said he saw where the Connecticut shooting "theory" was going as soon as news reports mentioned Asperger's.
"I thought, here's another situation where people will try to make a spurious connection between the two things. Everyone's desperate for a reason," said Thompson, whose research is about how children read others' feelings, something Asperger's patients are unable to do.
"In the case of the Connecticut murders, we can conclude absolutely nothing," Thompson said. "As a society grasping for answers, we need to be patient. You can't make a correlation out of two data points."
Like others, Jekel said the focus now should be on providing care to those in need.
"The discussion needs to happen. The services are not there, particularly for teens and young adults," she said. "There is awareness of the gun issue and the mental health issue after the shootings, and I hope people are ready to take action on both fronts."
Staff Writer Noel K. Gallagher can be contacted at 791-6387 or at: