UVA Students Learn First-Hand How People with Autism Feel
Autism is a mysterious neurological condition marked by repetitious behavior, difficulty communicating and interacting socially. About one in four people with autism don’t use speech to effectively communicate, but at the University of Virginia one professor offers a class that could break down barriers to understanding what young adults with autism think and feel. Sandy Hausman has that story.
On a Saturday afternoon, 20 undergraduate psychology students have gathered in a large multi-purpose room to converse with ten non-speaking autistics from Northern Virginia who meet regularly at Growing Kids, a speech therapy center run by Elizabeth Vosseler.
She explains that speech begins in a part of the brain that controls motor skills. Language, on the other hand, lives in another part of the brain, and Vosseler says people with autism "have an issue in the motor area for speech."
But the autistic group, which calls itself the Tribe, can communicate in other ways – typing or pointing to letters on a small board. The autistic adults and the UVA students have been corresponding and blogging since they first met last fall, and today they’ll be talking about whether a cure for autism would be a good thing.
“I guess a reason an autistic person specifically would want a cure is because maybe they feel like their autism blocks their ability to form relationships,” says student Diogo Fortis.
Student Allison Parcell agrees, “Just frustrations that arise from that may just push someone to want an easier route,” she says.
“I would think that somebody would want there to be a cure for autism because they thought the individuals affected would be happier,” says Professor Dennis Proffitt.
“I think that having a cure is something our society really values, having options and having the ability to do what you want,” adds student Mary Grace Britton.
But for Emma, it’s not so easy. She blurts out random words, plays with her cell phone and seems to be somewhere else. In fact, she is following the conversation and has very definite ideas on this subject.
“This is a tough situation," says an assistant who watches Lauren spell out her message. "Parents want it easier.”
But another member of The Tribe, Huan, says he’s not worried about what parents want.
“I think my life and diagnosis are my business,” the assistant says.
That doesn’t surprise Professor Vikram Jaswal.
“Autism is part of who they are," he explains. " If you want to cure autism, you want to change who I am – you want to get rid of me. Of course they’re interested in being supported and receiving the appropriate accommodations for the challenges that they face, but a cure – not so much. They’re not interested in that.”
By watching these letter board conversations and reading correspondence, he’s discovered that this group of young adults with autism shares many of the same ideas, interests and feelings as his students.
“They are full of insights, hungry for information," Jaswal says. "They are insightful about their own condition but also about the state of the world. There are autistic people who are desperate to engage with other people and to make friends. For example, one member of the tribe wrote about a memoir in which the daughter expresses this longing for finding love, and an autistic member of the tribe wrote that she experiences the same thing – that she longs to find love, somebody who will love her for who she is. They’re more like us than not.”
And Elizabeth Vosseller says her group loves connecting with the college kids.
“They’ve been set free from a prison of silence! They’re really enjoying having a peer group, and as one of our students put it, “To be part of the discussion instead of the topic of the discussion.”
For senior Thuy Vuong, this class has created an amazing opportunity. As it happens, his 19-year-old brother is a member of the tribe, and the two have communicated more deeply than ever before.
“He said sometimes I wish I could have a vacation from my body," Vuong recalls. "I wonder how many other autistics feel the same, how much they would want to be able to feel in control.”
Diogo Fortis also has an autistic sibling – an older brother. Talking to one member of the Tribe made him realize what he had missed.
“He wants to get his GED and go into culinary school if I’m not mistaken, and I just thought , ‘Wow, that’s so cool,’ but it also made me sad, because it made me realize that my own brother could have these dreams and aspirations, and what have I missed during 19 years of my life?”
For their part, members of The Tribe have explained some of their puzzling behaviors.
“Sometimes they say things over and over again," Jaswal says. " Sometimes they’ll repeat what someone else has said. It’s apparently meaningless speech. When they are communicating in their alternative way, pointing to letters on a letter board to complete words and sentences, they’re able to express the fact that they know that what they’re saying in many cases is meaningless, and they just can’t help but do it.”
Jaswal hopes to continue teaching the course for several more years. He’ll be consulting the autistic group for ideas on topics for future research while gaining new insight into his own child – an 8-year-old daughter who is autistic.