Making way for Diego
When Edlyn Vallejo Pena, a specialist in equity and inclusion in higher education, learned that her son had autism, she set out both to understand his world and to push for faster change at universities.January 20, 2012
Diego, 4, expresses himself through an iPad with special communication software.
Photo: Brian Stethem
Education professor Edlyn Vallejo Peña has about 15 years to get
Diego ready for college and to get college ready for Diego.
As she suspected not long after his first birthday and confirmed at about 18 months, her son has a lifelong disability. His problems with communication place him on what Peña and other researchers call the autism spectrum. For now, at age 4, he expresses wants and needs not through speech, but primarily through an Apple iPad with a baby blue bumper and special software.
One day last November, unprompted, he began using the iPad interface to steer his mother to the couch for affection.
"I want ... hug," said Diego, tapping icons.
As Peña sees it, having a child with autism magnifies everything about parenthood. Uncertainties about the future loom large, and each of Diego's accomplishments feels like a breakthrough. When other parents leave their kids to play, she remains at his side in case he needs protection or a break. Precisely because of his difficulties with communication, the parenting never stops.
"When he's in his own world and he doesn't acknowledge me in the way that most people acknowledge each other, it's easy to say, well, I'm just going to do my own thing," Peña said. "But you can't do that. I can't pretend that Diego doesn't know what's going on, because he does."
At the same time, having a child with autism magnifies the challenges facing an education professor who specializes in ways to promote equity and inclusion on campuses. Peña, who is Cuban-American, wrote her dissertation on building the capacity of faculty members to support students from racial and ethnic minorities. Since Diego's diagnosis, she has become an expert in similar issues as they relate to autism and Asperger's.
"As I learn more about Diego, that feeds into my research, and as I do more research, that feeds into my work with Diego," she said.
With her colleague Jodie Kocur in CLU's psychology department, Peña is launching a study, based on interviews with parents, about the path through college for undergraduates with autism spectrum disorders.
Peña also chairs the dissertation committee of Barbara Sorter, a CLU doctoral student in education who conducted interviews with college students on the autism spectrum at a four-year public university in this region. Sorter is assessing the challenges these students face and rethinking how college disability offices can respond.
Many questions remain for researchers in this field. For Peña, progress can hardly come quickly enough.
Until he was about 13 or 14 months old, Diego Peña met all of the usual developmental milestones on time. He sat up, crawled, walked and said "mama" and "dada." But sometime between then and 18 months, he stopped speaking. He stopped pointing and stopped sucking from a straw. He stopped following simple instructions.
Peña and her husband – Damien, a former CLU staff member now working at CSU Channel Islands – soon found themselves engaged in the "very political process" of getting their son an official diagnosis, which involved an independent assessment. There was also a lot of introspection.
"Emotionally, it tears up your world, because you start questioning, what does this mean for our family, for our future?" Peña said. "And I think there's a bit of denial in the beginning where you think, ‘I can fix this.'"
In a poignant telling of her story, a video short titled "Finding Diego," Peña describes how she learned again to talk to her son after several distracted months spent "talking in front of" him and struggling to make a connection. The toughest period followed his diagnosis at age 2.
Now, Diego attends a mainstream class at a private preschool and gets 35 hours of behavioral and other therapy every week at home. Five or six people come and go during the week, so the house doesn't know much quiet before dinner.
Peña supposes that the interior world where Diego often dwells includes characters from the "Toy Story" films, Super Grover, swimming pools and a lot of music. Lately, with the help of medication for epileptic seizures, a new diagnosis, Diego sleeps more deeply and has emerged from his sometime "fog," she said.
He learns sight words and numbers quickly, and has academic potential. Peña's concerns about his future revolve instead around the consequences of his limited social skills.
"Smart isn't going to get you everywhere," Peña said. "You need to be able to navigate the world, and you do that by interacting with people."
College students on the autism spectrum face daunting challenges, in part because of the premium that college life places on independence. For lack of friendships, the seven students interviewed by Sorter continue to see their mothers as their main source of support. They benefit when the disability office provides note-takers, who free them from having to write down information while trying to absorb it. But they are generally unable to manage their own time, and disability offices have been slow to offer the study reminders and coaching that many of these students received in high school, according to Sorter.
Life after college is a topic that these students don't often broach.
"It's more about just getting through the week. For some of them, it's about getting through the day. As far as having long-term goals and objectives, they don't have any," Sorter said of the interviewees.
Among the day-to-day struggles are relationships with instructors. A student who zones out during a lecture or, conversely, talks out of turn and at length may appear rude or abrasive. If that student has autism or Asperger's, he or she may be oblivious of any problem and feel mortified when called to account.
For Peña, the remedy involves not only careful instruction for students but also more mandatory professional development for faculty members. Making this sort of training voluntary sends the wrong message, she said.
"We don't have the ability to choose whether we have students with disabilities in our classrooms."
Roughly one percent of children are now diagnosed with autism spectrum disorder, and 10 percent of today's college students have a learning disability of some sort. Although discussion of the issues is healthier than it was a generation ago – when children with autism, for example, were often thought of as either robotic or aggressive – Peña observed that in the last two decades the leading professional journals in higher education have devoted about one of every 100 articles to disability.
"I would like to do research on students with autism, and not only that, but also publish it in top-tier, mainstream journals, so that we're not just relegating these issues to the disability journals," she said. "That mirrors what society does. We relegate these issues to the disability office."
Naturally, Peña's main focus is on her son. Between his communication devices – he has his own talking iPod Touch, in addition to the iPad – and the daily therapy, she believes his prospects of overcoming the obstacles arrayed ahead of him are good.
"I adjust my expectations of Diego with caution, because I need to be realistic about his capacities, but I don't want to limit him. Everyone else will do that for him," Peña said. "One day he will set foot on a college campus, and I want that campus to be ready."
For more about Edlyn Peña, visit her new website.