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Studying the Spectrum
Studying the Spectrum

Purdue researchers come together to address autism

Imagine trying to improve the diagnosis, intervention, and community support for a condition that often does not look the same from one person to the next.

“If you’ve met one individual with autism, you’ve met one individual with autism,” is a widely referenced quote by Stephen Shore, an advocate for people on the autism spectrum, in an effort to show the diversity of that spectrum. 

An elementary school teacher could work with one child with an autism spectrum disorder, then teach a child the next year with entirely different characteristics. And considering the condition’s prevalence, it is likely the teacher could have a couple children on the spectrum in the same classroom who are very different. 

The definition of a spectrum covers an entire range of points, whether they be color, radio frequencies, or a neurological disorder such as autism. Autism is a complex developmental disability that affects how people communicate and interact with others. Some people on the spectrum can experience cognitive difficulties, while others could be exceptional learners and identified as gifted and talented. Some may seek sensory experiences while others may avoid such sensory input to the point that walking through a loud store could be overwhelming or even painful. 

A dozen Purdue scientists and clinicians are working together as part of the Purdue Autism Cluster to advance research and identify ways to help people and their families. The cluster, which was launched five years ago, brings together faculty across disciplines to study the biological,  genetic, behavioral, and applied approaches to the spectrum and its causes, diagnosis, and treatment. 

“Often people want to talk about what causes autism, and that is important to identify; but what I’m interested in is how we can help individuals and families with the various challenges,” says A.J. Schwichtenberg, codirector of the Purdue Autism Cluster and an assistant professor of human development and family studies. Her area of expertise focuses on sleep and child development on the spectrum. 

Carolyn McCormick, an assistant professor in the Department of Human Development and Family Studies, is one of the cluster’s most recent hires. She is interested in early intervention and specializes in how physiological elements relate to behavior. 

“The cluster was a huge draw for me to Purdue,” McCormick says. “Having an interdisciplinary team is key to answering these questions. Autism is a very complex disorder, and it affects multiple levels and we need researchers to cut across those levels to answer questions. I’m really excited to be here. I feel like I’ve hit the jackpot.”

Even though the cluster is fairly new, the faculty in the Cluster have been awarded $5 million in federal research funds relating to autism research. In addition to conducting research, the cluster is working to improve autism-related course offerings and strengthen community support systems and resources to better serve families. That personal reach also goes beyond the Lafayette community. Thanks to a grant of almost $1 million recently awarded to Bridgette Tonnsen, an assistant professor in psychological sciences, she will be able to work with families across the United States as part of a telemedicine study evaluating autism risk in infants. 

Hidden disability

Autism affects one in 68 children. It’s more common in boys, estimated at one in 42, but some evidence indicates that it may be underidentified in girls because of gender differences that make diagnosis more difficult. 

“The nuances with girls can be harder to detect and as autism is more prevalent in boys research tends to be more focused on their needs,” says Rose Mason, an assistant professor of special education. “As a result, we have a lot more to learn about how to assist girls on the spectrum particularly when it comes to social and communication skills.”

Another barrier to identification: “Many kids with autism don’t look different,” says Mandy Rispoli, an associate professor of special education and codirector of the Purdue Autism Cluster. “It’s a hidden disability, and because of that it’s really hard on families. When a child with autism throws a tantrum in the grocery store checkout lane the parents may be judged and blamed for not disciplining firmly. We need more empathy for families thrown into this world of autism, 24 hours, seven days a week for life.”

Rispoli also is interested in supporting teachers. She is evaluating weekly coaching sessions with teachers to help them self-monitor and be better prepared to handle the various challenges that come with a diverse group of students. When it comes to behavior challenges, applied behavior analysis is most commonly used and supported to help children on the spectrum. Rispoli, who is nationally certified as a behavior analyst, describes the positive outcomes for this approach as “tremendous.” The approach focuses on identifying and removing environmental triggers and teaching socially appropriate skills.

“It is a way of understanding, predicting, and changing how people behave,” she says. “Within applied behavior analysis, learning and behavior are examined within the context of the environment. By altering the environment, we can alter individuals’ behaviors to increase behaviors such as communication skills, social skills, and academic skills and to decrease behaviors such as those that interfere with learning or with social interaction.”

Kids with autism can’t always communicate frustration, so throwing a tantrum or slamming a door is how they try to communicate, Rispoli says. When that is identified, the provider can work with the child to use words, sign language, or gestures to communicate. 

Working with adults on the spectrum 

“The prevalence of autism is so high all teachers are probably going to have a student with autism in their classroom,” says Mason, a new member to the cluster who previously worked as a school psychologist. She realized she, like many others in general education, didn’t have the skills to work with this population, so she went back to school. After earning her doctorate degree, Mason dedicated her research to improving provider training and intervention programs, especially those serving older adolescents and young adults. 

Mason is looking at how technology can be used to help people on the spectrum. Often, a young child on the spectrum will have a professional to assist with social communication issues, such as general prompts to remind the child how to respond to a peer asking a question. But, as the child grows older, having an adult present can be socially stigmatizing. 

“Yet, as an individual gets older, the social and communication expectations change and individuals with autism are likely to need some assistance learning the new rules,” Mason says. 

Mason is evaluating a technique called covert audio coaching, which allows the interventionist to provide assistance remotely with web conferencing technology. This approach was tested with female college students on the spectrum. 

“Reminding a teenager to show her peers that she is listening to them while sitting next to her is not conducive to peer relationships,” Mason says. “Using technology this way discreetly provides the prompts they need to learn the skill in a natural setting. For many of the participants, it was their first successful social interaction. The girls who participated in the study were disappointed when it ended.” 

Mason is analyzing data from the college student study. If successful, she says the approach could be used in other settings, such as work environments. The approach could assist in learning expected work tasks such as greeting customers. Over time, the approach could help them work toward greater independence.

Given that autism can fall on various points of a spectrum, it’s often difficult to determine what kind of assistance a person might need. Someone could be nonverbal or high-functioning or come across as rude. Sometimes being too high-functioning, it’s hard to detect whether they would need any assistance at all. Often, they don’t have support for life skills. 

“There is often a stereotype or assumption that people on the spectrum don’t want to have friends. But, I have never met an adult with autism not wanting to interact; they just didn’t know how,” Mason says. 

Finding strength in weakness

Brandon Keehn, an assistant professor in the Department of Speech, Language, and Hearing Sciences and the Department of Psychological Sciences, runs the AtteND Lab for Attention and Neurodevelopmental Disorders. He is studying the brain and neural system to better understand the role of attention and neural mechanisms in children on the spectrum. This past summer, he ran the first SuPur Friends Camp. Children ages 9 to 12 attended nine days to receive social skills instruction in peer groups while also participating in Keehn’s research projects. 

“My lab also studies areas where kids with autism perform better than their peers without autism,” says Keehn. “There is something relatively unique about a neurodevelopmental disorder, as usually we think about them only in terms of weaknesses — areas where they struggle compared to their peers. But autism is special in the sense that kids on the spectrum actually do some things better than kids without autism.”

For example, children who participate in a visual search task in Keehn’s lab are trying to find a specific target. They may have instructions to look for a “T” or an “L” embedded within a bunch of other distracting things. Keehn says children with autism are much faster at finding the target, and the harder the task is made, the more disproportionately faster the children on the spectrum are compared to individuals without autism. 

“We want to learn more about why that is for a variety of reasons,” Keehn says. “There are many reasons why kids can perform poorly at something.”

Children with autism often struggle with face processing — recognizing emotional states and interpreting them in a social context. An individual child may not make eye contact in any given situation due to over arousal, lack of interest, or a host of other reasons. But, as a group, it’s likely that children with autism will share characteristics that make them better at something. 

“We think we can trace that back to the brain and identify what is different about the brains of kids with autism spectrum disorder,” Keehn says. “If we think about those differences as a scaffolding mechanism, we can use that strength to help kids with autism develop other areas where they may not be as strong.”  

Illustrations by Andrew J. Nilsen