For Yale Child Study Center director and autism researcher Fred Volkmar, speaking at conferences and scientific meetings is a routine part of his busy schedule, but one recent invitation to speak held special significance.
“The Scoutmaster of Boy Scout Troop 4 in Wallingford asked me to speak about autism at one of their meetings,” said Volkmar. “They were dealing with more issues related to autism, and they wanted education on the topic. Of course I was happy to educate the scout leaders, parents, and the children about autism and bullying.”
Not only did this talk take place during Autism Awareness Month, but it marked the 30th anniversary of a unique class on autism that Volkmar and his Child Study Center colleagues have been offering to Yale undergraduates since 1983. In fact, Christopher Rim, one of the students in this semester’s class, accompanied Volkmar to his Boy Scouts speaking engagement on April 9. Rim is the creator of a widely disseminated anti-bullying model called “It Ends Today” and also works at the Yale Center for Emotional intelligence.
When “Autism and Related Disorders: Seminar and Practicum” began in fall 1983, autism spectrum disorders (ASD) were barely noticeable among the many other developmental disorders affecting children. It was diagnosed at a rate of 1 in every 4,000 children and adults. Today, according to the latest numbers from the Centers for Disease Control and Prevention, 1 in 68 children in the United States has an autism spectrum disorder. This makes the race to pinpoint earlier diagnoses and treatments even more pressing.
A flood of new research has also led the diagnostic manual to re-classify the disorders on the autism spectrum so that treatment can be targeted to specific degrees of impairment and symptoms.
Do's and don'ts concerning people with autism
• Be patient. Sometimes responding to questions can take a bit longer for people with language difficulties.
• Use straightforward language and avoid sarcasm or figurative speech.
• Understand that not making eye contact is not intended to be rude.
• Remember that people with autism often desire friendships. Introduce yourself and give it a chance.
• Don't take stereotypes for granted. People with autism are as different from one another as people without autism.
The Yale autism class is an effort to educate the health care community and the general public to recognize the developmental problems associated with ASD at the earliest age possible. The topics covered are continuously updated to match the pace of research. Each year, about 25 students are offered a seat in the seminar, which Volkmar says is the third most popular class among undergraduates at Yale. Lecture topics range from the basics of autism to assessment and treatment, science, genetics, neuroscience, and social policy.
“Over the years, students leave the class with more knowledge about autism than the vast majority of professionals,” said Volkmar. “Many people in this country are interested in autism. Students like the class because it’s a small seminar, and they get one-on-one time with guest lecturers and practical research experience at Chapel Haven and Ben Haven.”
Child Study Center researcher and assistant professor James McPartland has co-taught the seminar with Volkmar for six years. One of the most satisfying aspects of studying and teaching about autism for McPartland is seeing research results having a real impact on those affected by the disorder.
“As a researcher, autism is fascinating to study. The puzzles we’re trying to solve have significant benefits to people,” he said. “What’s nice is that over time, we’re seeing improved outcomes for so many patients. The class is creating a whole new generation of professionals who might one day put all the pieces of the autism puzzle into place.”
Volkmar said many of the students in the class have a sibling or other relative with autism. Most of them are not only intellectually interested, he notes: They’re also personally invested in learning as much as possible about the disorder.
It was this personal investment that led Volkmar and Rim to eagerly accept the request to speak at the Boy Scouts troop meeting. In this unique community outreach experience, Volkmar provided tips on developmentally appropriate ways to interact with children with autism to a packed audience of parents, scout leaders, and scouts. Rim spoke to the group about ways to spot and combat bullying. It is estimated that between 40% and 70% of children on the autism spectrum are bullied.
“Silence gives consent, so we wanted to educate and encourage inclusion,” said Volkmar. “We wanted to show them that developing good relationships with children with autism is possible.” (See: “Do's and don'ts concerning people with autism," left.)
Barbara Marek, the scoutmaster who reached out to Volkmar, said the talk was a success. “I never dreamed that I could get Fred to respond to my invitation,” she said. “I expected to be shuffled off to someone else, but he wrote me back in 15 minutes.”
Marek said she had been seeing more and more scouts with autism issues throughout the local scout community and realized leaders needed help to keep them engaged. “We didn’t know enough about autism to help them on our own,” she said. “We also realized that some of the typically developing boys had problems interacting with their peers with autism.”
Marek said the scout leaders, 27 scouts, plus interested parents were excited to hear Volkmar and Rim speak. “Fred covered what autism is, how it works, and how people with autism see the world. He also provided practical ways for the adults and the scouts to react and handle situations that come up, such as lack of personal space, interrupting, and repetitively speaking on the same topic.”
“Everyone was enthralled and asked a lot of questions,” Marek added. “They all came away feeling more confident that they now have some skills to go out and interact in more practical, positive ways with the boys who have issues. Fred’s presentation related the facts to real-life situations, and he used pictures and artwork to grab the attention of the audience. He kept it at a level the kids and their parents could understand. It’s clear that he loves what he’s doing, and that’s infectious.”
Rim reinforced the anti-bullying message the scouts are already getting. Marek said she and the parents didn’t really understand how big a problem bullying is, and how children with autism are particularly susceptible to bullying.
“Scouting is very inclusive and we want to welcome children of all different abilities,” said Marek. “Personally, I learned not to worry about coming across as impolite when dealing with scouts on the autism spectrum. I have to remember that many of these children take things literally, so I have to think about giving very concrete steps and directions.”
“We’re volunteering with Boy Scouts because we are trying to help young boys of all abilities become successful,” Marek added. “After this talk, I feel more empowered to do so.”