Selene dePackh sits at her grandfather’s elbow. He’s drawing on the window with a wax pencil. What is he doing? she wonders. Is he just scribbling? She can’t ask him; he almost never speaks directly to Selene. Granddaddy also never looks her in the eye. But as she watches his hand move across the window, she realizes that the lines aren’t just abstract squiggles. Her grandfather is outlining the Washington, D.C., cityscape. He’s drawing the world he sees through the glass. And from this vantage point, he will teach his granddaughter about visual perspective.
It will be nearly 40 years before dePackh meets researchers at Carnegie Mellon University who look inside her brain and help her understand why it works the way it does and, by extension, why her grandfather operates the way he does. But for now, under the quiet, methodical tutelage of Granddaddy, a classically trained artist, Selene’s own artistic expression blossoms. Her parents also encourage her to read voraciously, and so she spends countless hours in her room, “obsessed with grammar and the layers and structures of words.” Selene’s father is a nuclear physicist who built a shortwave radio out of scavenged parts at the age of nine and graduated from the University of Chicago at 17—he encourages Selene to follow her passions, and together they explore the subjects of mythology and photography, telling stories and taking pictures that are snapshots of human experience. One day he brings home a set of ball bearings, and the little girl spins them over and over, “listening to the music of the spheres,” she writes, and “learning about the workings of the universe.”
But the universe is sometimes perilous. At school, Selene is mercilessly bullied. She tries four times to finish college, but after starting out with excellent grades each time, she dissolves and doesn’t know why. Later, she suffers in an abusive marriage. She doesn’t feel able to succeed at anything, and she looks inward for some sort of “moral failing.” Something tells her, though, that there is more to her story. A psychologist suggests she might be autistic, and, as dePackh investigates the subject, she hears echoes of herself. Of Granddaddy.
Then at age 55, she sees a call for test subjects. The Center for Excellence in Autism Research at the University of Pittsburgh, under the direction of Nancy J. Minshew, is recruiting adults in her age bracket for an autism study in cooperation with CMU. DePackh volunteers. It’s time for an answer. The study brings her to CMU’s Marcel Just, and to a whole new way of viewing herself.
These kinds of discoveries are par for the course at CMU, a Pittsburgh-based university known for everything from the arts to business to engineering to technology to public policy to humanities—and, of course, science. One of the university’s neuroscientists is Just, a professor of psychology and an internationally recognized pioneer in the area of brain research. You might have heard him on NPR or seen him on 60 Minutes, discussing studies at the Center for Cognitive Brain Imaging and the Scientific Imaging and Brain Research Center. His life’s work is to figure out how we get thought out of the brain. So what if that brain happens to be autistic?
Since the late 1990s, his research group has been using functional magnetic resonance imaging (fMRI) and other technologies to answer this question. Fearful but hopeful, dePackh entered the scanner and looked at patterns, shapes, and pictures of faces, learning exercises designed to engage the frontal and posterior regions of the brain. Studies like this one have enabled Just and his colleagues to put forth a groundbreaking view of autism, expressed as “underconnectivity.”
Just first discussed the idea that autistic brains lack synchronization in the 2004 article “Frontal-Posterior Underconnectivity Theory of Autism.” The underconnectivity theory proposes that autism is a cognitive and neurobiological disorder associated with underfunctioning of integrative circuitry, resulting in a deficit in integration of information at the neural and cognitive levels. Recent studies have confirmed his theory through revolutionary findings that in an autistic brain, the white matter, which enables communication between the frontal and posterior regions, is different from that of a neurotypical brain. His work has helped enable the scientific community to quantify autism as a specific pattern of brain function, rather than simply identify it from a list of symptoms.
So if there’s less connectivity, can each part of the brain do its own job just as well? Just says that’s like “asking whether a quarterback and receiver are each doing a great job. Good communication between all relevant parts is how all thinking is done for all people.” Science has shown that some interventions can change white matter and increase communication. “When you get neurons in vitro and make them fire over and over,” Just explains, “the ‘janitor’ cells around them deposit more and more white matter.” This insulation makes signals travel faster, increasing the tract’s bandwidth. Discoveries like Just’s are paving the way for earlier, more certain diagnoses and targeted therapies, not just for autism, but for other neurological conditions.
At school, Selene is mercilessly bullied. She tries four times to finish college, but after starting out with excellent grades each time, she dissolves and doesn’t know why.
DePackh wishes this information had been available when she was a child. Then she would have known why she was susceptible to bullying in school, and she wouldn’t have blamed herself. Just’s findings ultimately gave her an expanded sense of herself, a watershed moment. Unlike her grandfather, who was never diagnosed, dePackh now has her own metric confirmation of her autism. In fact, she believes her father was also on the autism spectrum, but no one ever labeled him as such. Even though it was a long time coming, she was validated by Minshew’s autism study as a “card-carrying autistic,” one of nearly 4 million in the United States alone who are estimated to have autism.
So what does that diagnosis mean? Autism spectrum disorder (ASD)—which, according to several estimates, affects 1 of every 68 children—is typically defined as a developmental disability with impairments in social skills and verbal communication, as well as restricted and repetitive patterns of behaviors. DePackh describes phone conversations as “trying to understand someone who speaks rapidly in a heavy foreign accent.” But it goes without saying that no two autistic people are alike (are any two humans?!), and on this wide spectrum, some are non-speaking, some are remarkably gifted at math or memory tasks, some struggle with meltdowns that require a day in bed. People on the autism spectrum also commonly experience attention deficit hyperactivity disorder (ADHD), tics, intellectual impairment, seizures, depression, or anxiety.
Self-esteem is often at the crux of the autistic activist world—a world that dePackh embraced after participating in the Just study. Since she became a member of what she refers to as a “tribe,” dePackh’s mission has been to challenge the idea that kids with ASD need to be “indistinguishable from their peers.” If that’s the goal, she worries, then what have we lost? Rather, she advocates, let’s create thoughtful inclusion. And although much of the media coverage of ASD focuses on autistic children, dePackh provides a portrait of adults with ASD. Let’s show role models to autistic kids and their parents, she advocates. Let’s show parents that autistic adults were once “just like your kid.” And those kids can bloom in beautiful ways: “One of us might be a neurosurgeon, and another might be a spectacular mechanic, and another might be a poet.” To spread this message, dePackh has written for several national publications.
Spreading the message is not always comfortable. Just ask Marlene Behrmann, Professor of Cognitive Neuroscience at CMU. She has published regularly in the world’s top scientific journals, and her trailblazing studies of visual perception have been featured everywhere from The New York Times to the Huffington Post. Her recent work is “a bit controversial,” Behrmann says, because it indicates that current methodologies might be doing a disservice to autistic learners. This includes applied behavior analysis—common interventions that use repetition and drills to increase or decrease targeted behaviors.
Here’s some background. One hallmark of autism is inflexibility in learning. That is, if you repeatedly show kids a picture of a dog and even different dogs, they will learn it’s a dog—but then when you show a picture of a cat, you have to start from scratch. There’s no transfer of knowledge. Behrmann’s studies have demonstrated this pattern in autistic individuals. Next, she wanted to look for a way to increase the flexibility of the autistic brain. She found that when participants were trying to learn patterns on a screen, inserting an occasional blank, or “dummy,” screen enabled subjects to learn the patterns better. In other words, when the autistic brain is given a “refractory state,” the neurons can recover. Then they continue to perform a task well and can also generalize and acquire additional information.
Behrmann’s research findings suggest that the existing pedagogy for autism needs to be reconsidered. “By trying to allow [autistic students] to acquire information slowly and incrementally, we’re doing a disservice,” she argues. A preferable method would be to interleave different kinds of learning. The repetition of “This is a dog, this is a dog, this is a dog” could become “This is a dog, this is a cat, this is an elephant.” If we can prevent the “fatigue” of neurons, we might be able to increase learning by promoting generalization.
Another vein of Behrmann’s research has to do with visual, sensory, and auditory stimuli. The publication “Unreliable Evoked Responses in Autism,” which made the cover of Neuron, demonstrated that whereas a neurotypical brain responds consistently to stimuli, individuals with autism experience extreme variability. This means, Behrmann says, “If I show you this piece of paper, your brain responds in a certain way. If I show it again, your brain responds in the same way”—it’s the same piece of paper. But that’s not true in autistic individuals. For dePackh, this meant budgeting an extra 30 minutes every time she tried to go to a college class, because she kept getting lost: “I couldn’t recognize the spatial relationship between the buildings and paths. I knew I was somewhere familiar, but I couldn’t sort out a direction.”
It’s not surprising to Behrmann that some sensory stimulation might be overwhelming. On top of that, she explains, if the elementary sensory cortex is rigid, “then when you get to more complex behaviors, like social interaction or language acquisition, the same rigidity would be present.” Because of these kinds of innovations in her field, Behrmann was elected in 2015 to the National Academy of Sciences; she’s the first female scientist from CMU to be elected.
For dePackh, she has found identity in autism and expresses that identity in rich ways. She uses 3D programs to make digital art, for instance, and she’s writing a memoir about ASD, as well as a dystopian novel series. Although she struggles to translate the story from the mind to the page in a linear narrative, she’s also synesthetic, meaning that she connects the five senses: a piece of music evokes a smell, or “twos are yellow and salty”—just the kind of metaphorical conception a writing teacher might strive to elicit from a student. Indeed, her deepest hope is that someday, “rather than looking for a way to cure us, the young kid who is diagnosed in the future will be tested for what he or she is good at.”
Scientific inquiry into the workings of the autistic mind has the potential to increase inclusion and acceptance, and CMU is integral to this movement. Behrmann and her colleagues wrote a recent paper that takes an optimistic tack, detailing their studies on the superior ability of ASD individuals to perform in a luggage screening task. Justine Cassell, CMU’s School of Computer Science associate dean for technology strategy and impact, works on a virtual peer that assists autistic children with social interaction. And some CMU researchers explore paths that might lead to pharmaceutical interventions; after all, for some individuals, ASD is isolating and painful. Kathryn Roeder, professor of statistics and computational biology, investigates the genetic frontier, organizing the known genes that relate to autism into a logical network, ushering in eventual drug therapies, which Behrmann says is the cutting edge of autism research—genetics and neurobiology.
Additional cutting edge research is taking place at BrainHub, a CMU initiative that weaves biology, neuroscience, psychology, computer science, statistics, and engineering to answer complex questions about the human brain. Behrmann, Cassell, Just, and Roeder have all been contributors.
Behrmann’s recent work is “a bit controversial,” she says, because it indicates that current methodologies might be doing a disservice to autistic learners.
DePackh sympathizes with parents who hope for a cure, or who panic when they hear that their children are autistic. But, she encourages, it’s important to remember that all kids grow and change. She had meltdowns as a child; she made atypical movements; she had trouble navigating social cues. But even though she still sometimes has to pinch herself, or look down to focus her thoughts, or budget extra time to find a new place, she is comfortable in her own skin. Or, perhaps more aptly, in her own white matter. And being with people she cares about is one of her main joys. DePackh is now in a committed, loving relationship, and like her grandfather before her, she has taught art to children.
Although autistic people are certainly not fractured, as the autism puzzle piece logo might suggest, it’s clear that every brain presents puzzles. The teams at CMU are doing innovative work to put the pieces in place. One day, the work of Just and his colleagues might enable psychiatric assessment through fMRI, diagnosing various conditions by determining how brains process certain concepts. Behrmann talks excitedly about her collaborations at CMU as well. She jokes, “It’s a little bit like ‘A neuroscientist, a computer scientist, and a visual psychologist walk into a bar.’” And, dePackh might add, as much as possible, let’s invite people with ASD into the bar as well. Autism activists are helping to expand the narrative, to tell the story of autism beyond childhood. In that vein, Autism Connection of Pennsylvania hosts its spring conference, “Ensuring Positive Outcomes: Emerging Trends,” on April 8. April is also Autism Awareness Month. But really, says dePackh, “Who’s not aware?” For activists, the conversation centers instead on acceptance and inclusion. The next step, dePackh says, is “recognizing strengths rather than calculating deficits.”
Last fall, she wanted to attend a writing conference hosted by Pittsburgh’s Chatham University. It was a daunting thought, though, given her prior difficulty navigating the campus and given the possible sensory overstimulation of such a crowd. But this time, dePackh was not deterred. Inspired by Just’s CMU study and her deeper understanding of how her brain works, she asked the organizer of the conference, Barrelhouse magazine, for help. And they arranged it with Chatham: A student escorted her to the sessions, and she was provided with a quiet meeting with a nonfiction editor in lieu of an interactive group session. “That made all the difference,” she says. “If I had had this when I started school, I could have made it through so beautifully.” She believes this type of experience needs to be at the heart of the discussion about autism: respectful accommodations that allow individuals to flourish. Behrmann agrees and adds that “CMU is “very good at dealing with accommodating students who need assistance.”
In 2010, John Donvan and Caren Zucker wrote The Atlantic essay “Autism’s First Child.” In the story of 77-year-old Donald Triplett, the first child ever labeled as autistic, they artfully encapsulate the choice that neurotypical people would do well to consider during Autism Awareness Month and beyond. Interacting with autistic people, “We can dissociate from them, regarding them as tragically broken persons. … Alternatively, we can dispense with the layers of sorrow and interpret autism as but one more wrinkle in the fabric of humanity. Practically speaking, this does not mean pretending that adults with autism do not need help. But it does mean replacing pity toward them with ambition for them. The key to this view is a recognition that ‘they’ are part of ‘us,’ so that those who don’t have autism are actively rooting for those who do.”
With this approach, we might then stand in front of the window alongside artists and teachers like dePackh and see the lines of wax on the glass pane, like those her grandfather etched long ago. The lines start like scribbles, perhaps like the warbled edges of puzzle pieces, but they eventually trace a path that, in the end, reveals the world.
