A new School of Communication collaborative tackling autism research and clinical advancements shared their findings—and the work of their peers— at the 2019 Lambert Family Communication Conference, “Understanding the Autism Spectrum: Clinical, Biological, and Cultural Perspectives.” With discussions ranging from how families cope with autism to the latest research about autistic brains, clinicians, researchers and families affected by autism packed Norris University Center on April 26 to learn and share more breakthroughs—and barriers—to care.
“We realized there was a strong need for an integrative discussion forum to bring together some of the more important issues facing individuals with autism,” said conference co-organizer Molly Losh, the JoAnn and Peter Dolle Chair in Learning Disabilities in the Roxelyn and Richard Pepper Communication Sciences and Disorders. “So, we decided to do this conference and bring together experts in the important areas of clinical, cultural and biological study of autism…to really help us generate ideas and create momentum to advance change in the research, treatment, and policy aspects that affect individuals with autism, their families, and their broader communities.”
Losh and colleagues Elizabeth Norton, assistant professor, and Megan Roberts, the Jane Steiner Hoffman and Michael Hoffman Assistant Professor of Communication Sciences and Disorders, recently launched the Northwestern University Autism Research and Clinical Collaborative (NUARCC), which marries clinical work with research and education to improve outcomes for children and families impacted by autism. “Understanding the Autism Spectrum,” which was this year’s CSDConnect alumni-professional gathering and the Lambert Family Communication Conference, provided a prime opportunity to broadcast the collaborative’s mission and invite leading voices to help guide the conversation.
Alison Singer, co-founder and president of the Autism Science Foundation, spoke of her personal experience being the legal guardian of her brother with autism and also caring for her daughter, who was diagnosed with autism when she was 2 years old. Singer spoke of how new diagnostic standards, set in 2013 by the American Psychiatric Association’s fifth edition of the Diagnostic and Statistical Manual of Mental Disorders, led to using the same single diagnostic term for those who are highly functioning and/or have Asperger’s Syndrome and more severe cases of people who might be nonverbal, self-harming, and/or need 24-hour care.
“The Good Doctor has also broadcasted the message that autism is functional. That it’s something that doesn’t need special treatment,” she said. “Recent trends focus on higher-functioning individuals and it’s easier to focus on them…But for every person with autism looking for a job, there’s one who’s struggling to get through the day.”
Sandy Magaña, Autism and Neurodevelopmental Disabilities Professor at the Steve Hicks School of Social Work at the University of Texas at Austin, discussed cultural differences in treatment, especially for Latino children of Spanish-speaking parents.
The ADI-R, a set of diagnostic interview questions to help determine whether a child or adult has autism, may not be as effective a diagnostic tool for non-English-speaking patients, she said. While it has a 96% percent success rate of diagnosing English-speaking patients, Magaña found only a 69% success rate of diagnosing Spanish-speaking or bilingual patients.
“We need to take into account the cultural differences in interventions,” Magaña said. “For example, looking for eye contact is one of the signs in diagnostic testing. But, in many contexts in some cultures, eye contact is not appropriate between children and adults.”
Kevin Pelphrey, the Harrison-Wood Jefferson Scholars Foundation Professor at the University of Virginia School of Medicine, presented his research on using brain science to develop new diagnostic tools and treatments for individuals on the autism spectrum.
“The lack of biological-based tools for treatment and diagnosis means that we perpetuate the status of inexact treatment,” Pelphrey said. “It’s not one-size fits all, but an oversized treatment fits all, which leads to wasted time and resources. I want to use brain imaging to narrow down targets.”
A challenge in finding biological markers, Pelphrey said, is his discovery that autism affects male and female brains very differently. He looked at the part of the brain that identifies social movement, such as facial expressions. “Brain signatures for boys and girls are different, even though their symptoms are the same,” he said.
The three professors of NUARCC each research a different but complementary facet of autism. Losh focuses on language and other abilities associated with autism, often through studying genetic, environmental, and neural features of autistic patients and their families. Norton specializes in using brain scans and other technology to better understand language, learning, and developmental differences between neurotypical children and those experiencing delays. Roberts, a speech-language pathologist and clinician who concentrates on early intervention, recently published a groundbreaking study in the journal Autism Research highlighting her work in cutting diagnoses wait lists in half in Illinois by using multidisciplinary teams of professionals. NUARCC has a unique home here at Northwestern, given the University’s Center for Audiology, Speech, Language, and Learning—a clinical hub where SLPs and other specialists treat patients presenting on all facets of the spectrum.
Conference guests got a taste of what an interdisciplinary, Northwestern approach to autism looks like, thanks to a presentation by Seesaw Theatre, a student-run group dedicated to creating special performances for audiences with developmental differences. Ira Kriston, a friend of Seesaw, shared some of his experiences living with autism.
“I have Asperger’s and I live a vastly different life,” he said. “What’s easy for me, might not be easy for you. When doing theatre, what’s fun for one person might not be fun for someone else. This world would be so much better if we just all got to know each other.”
Nancy Anderson, a school speech pathologist who attended the conference, said she found the speakers informative.
“I especially liked the discussion about cultural differences,” she said. “I’m definitely going to take what I learned back to my school.”
The conference included brief presentations from Losh, Norton, and Roberts as well as their Northwestern Colleagues Adriana Weisleder, Peter Penzes, and Aaron Kaat. Researchers from Rush University Medical Center also presented, as did the director of genetics research for Autism Speaks.
The Lambert Family Communication Conference, established to highlight current, innovative and timely topics in the field of communication, is made possible through the generosity of the Lambert Family Foundation.
By Cara Lockwood