Creative Classroom: Unraveling the tangle of autism
The moment of truth came for Yale researcher Warren Jones over 13 years ago. He was a sophomore at Yale pursuing a double major in art and engineering when a small seminar on autism changed the course of his life.
“Like many undergraduates, I really didn’t know what I wanted to do with my career,” Jones recalls. “I knew I liked teaching children; I loved art and I also had a knack for engineering, but I didn’t know which direction to go in.”
How these varied interests came together to produce a career as a top autism researcher at the Yale Child Study Center can all be traced back to the autism seminar Jones found in the Yale course catalogue back in 1997.
At the time, Jones was a part-time art teacher at Benhaven, a school for children with severe autism. He loved teaching, but he wanted to learn more about the underlying medical condition that prevented his students from communicating in the same way as typical children.
“I was making a lot of sculptures that people weren’t understanding, and at the same time I was struggling to understand the experiences and needs of these children with autism. I began to see some parallels,” says Jones.
To expand his knowledge about autism, Jones approached Dr. Fred Volkmar, who was teaching the seminar, the first undergraduate course in the United States devoted to understanding Autism Spectrum Disorders (ASDs). Jones enrolled in the seminar along with two other students. Volkmar — now director of the Yale Child Study Center and the Irving B. Harris Professor of Child Psychiatry, Pediatrics and Psychology — walked Jones and his classmates through the history of autism, usually while they were all sitting on the couch in his office sharing a pot of coffee.
ASDs are a group of conditions marked by impairments in social interaction and communication, and by the presence of restricted and repetitive behaviors. Individuals with ASDs vary greatly in cognitive development, which can range from above average to intellectual disability. ASDs are known to be highly inheritable, and today scientists like Jones, Volkmar and Ami Klin at the Yale Child Study Center are still mapping the early development of the condition and trying to understand its underlying causes.
“It all began to come together for me,” Jones says. “The seminar was my first step into the rest of the world of autism. For my senior thesis, I built a hack eye-tracker to gain more insight into how people view the world. I thought that if I could somehow record how children with autism were looking at the world, we could in effect transcribe the drawings and gain a deeper understanding of the disorder.”
Fast-forward 13 years and Jones is now one of the guest lecturers in the autism seminar he took as an undergraduate. “It has been a nice way to come full circle,” he says. Through his research, Jones is also closer to realizing his dream of seeing the world through the eyes of children with autism. He works with Klin, director of the Autism Program and the Harris Associate Professor of Psychology and Psychiatry at the Child Study Center. Jones has been able to draw upon his engineering skills to build technology that analyzes the eye movements of children with autism. Jones, Klin and their colleagues study data from a lightweight eye-tracking device used to compare visual scanning patterns of both children with and without autism.
Over the years, Jones and Klin have found that two-year-olds with autism lack an important building block of social interaction that prompts newborn babies to pay attention to other people. Instead, these children pay attention to physical relationships between movement and sound, and miss critical social information.
As a guest lecturer, Jones is able to share this piece of the autism puzzle with students in the Yale seminar on autism and related disorders. The course has evolved since Jones took it in 1997. It feeds on a lot of the new research findings about autism and because of this, the material changes dynamically each year.
“When I took the seminar, we learned about cutting-edge research up to that point,” Jones says. “A lot of research advances have occurred since then, and interest in the topic is at an all-time high.”
The course — taught by primary instructors James McPartland, Volkmar and Ami Klin — now consists of a weekly seminar on a variety of topics related to autism and a practicum. As research evolves, the curriculum adapts to these new findings, but in general, topics by guest lecturers like Jones include autism diagnosis and assessment, and treatment of children, adolescents and adults with autism. It also touches on autism intervention programs, social development in autism, neuroimaging, behavioral treatments, communication in autism, the genetics of autism and psychopharmacology. The students are also assigned to help work with children and young adults with ASDs in local service agencies like Benhaven or Chapel Haven.
Earning a seat in the seminar is no easy feat. During the first week, over 40 Yale College students cram into the Senn Conference Room on the first day, but by the end of the first week, only 15 of them will be officially enrolled. The students have to lobby to be in the seminar by writing an essay explaining why they’re interested. The instructors consider the students’ personal, professional or academic reasons as well as their year in school. Juniors or seniors are largely chosen because they have already completed most of their core academic requirements.
Hilary Barr and Elizabeth Sharer were two of the students chosen to participate in the fall 2010 seminar. Barr, a junior cognitive science major, applied several times to take the class and was thrilled to learn she was accepted on the third try. “When I checked my e-mail and found out I finally got in, I did a little dance in my room and down the hallway,” she says. “I am so excited to learn more about the disorder and to actually get a chance to interact with autistic children and young adults.”
“I worked at a retreat for sick children and many of them have autism,” she adds. “Seeing how they struggle to communicate what they’re feeling has really touched my heart. I want to devote my life to try to find ways to help autistic kids communicate better.”
Like Barr, Sharer was excited to get into the class, but hers is for a more personal reason: Her older brother has high-functioning autism, and she wants to work on a professional level to help those with the condition.
“One of the reasons I applied to Yale was because I knew they offered this class,” says Sharer. “I want to develop a better understanding of what my brother is going through. It’s very hard to imagine what his life is like. I’ve only been able to observe him as an outsider, and I hope to develop an even more empathetic viewpoint. I am looking forward to learning from researchers who are doing groundbreaking work that could eventually help my brother and many others like him.”
The enthusiasm of students like Barr and Sharer is one of the things McPartland likes about teaching the class. “The prevalence of autism is increasing,” says McPartland, assistant professor in the Child Study Center, who began teaching the seminar in 2008. “This class is a valuable tool for taking very bright, motivated students and having them direct their energies to an extremely worthwhile cause. Hopefully we’re preparing the next generation of scientists and clinicians to become more informed and interested in autism.”
Barr, Sharer and the other students in this semester’s seminar will be assigned to a clinical placement at either Benhaven or Chapel Haven so they can apply what they’ve learned in the classroom in a community setting.
The young adults at Chapel Haven (most of whom are male) are being taught to overcome social difficulties so they can learn to live independently. For two years, the residents live in apartments within the facility and go about their lives with guidance from Chapel Haven staff.
The opportunity to learn about autism in both clinical and research settings is a big draw for students. “They receive first-hand results straight from our labs,” says McPartland. “It’s also an opportunity for us to present to a really eager, intelligent group of undergraduates who always ask questions about the next steps in the research. Being exposed to some of the research presented in the seminar has led some students to make it their career path. In fact, a number of former students in the autism seminar are now working at Child Study Center labs.”
Kevin Pelphrey, the Harris Associate Professor of Child Psychiatry in the Child Study Center, has lectured for the autism seminar. He studies the neural basis of social cognition and social perception and how that is disrupted in individuals with autism.
“I was excited to be a part of the seminar because I had heard great things about it and knew that it produced a few superstars like Warren Jones,” says Pelphrey.
“One of the things that makes the course unique is that almost all of the speakers are bringing in their own research, hot off the presses and ready for the students,” notes Pelphrey. “The students I’ve met are highly motivated, very engaged and deeply interested in the topic.”
Jones admits that he took a somewhat unusual route into working with children with autism, but he doesn’t regret his decision to study the condition.
“When I took that first autism seminar, I had no expectation that I would eventually go on not only to study the condition, but actually be involved in teaching the seminar,” he says. “All of this is a happy diversion, of course, from what I expected my life would be, and I’m thrilled with where I ended up.”
— By Karen Peart