The earlier that children who are showing signs of autism spectrum disorder receive specialized intervention, the better the outcomes.
Early detection and intervention for autism spectrum disorder (ASD) can significantly improve the lives of autistic individuals. Research has shown that children who receive early intervention have better language skills, cognitive skills, and adaptive behaviors compared to those who do not receive early intervention.
While an estimated 1 in 44 children in the United States is diagnosed with autism spectrum disorder by age 8, many kids get misdiagnosed or missed altogether due to the subjective nature of the diagnostic process.
Having a quick, objective screening method to encourage more extensive behavioral screening could help improve the accuracy and speed with which children are diagnosed. That’s why Georgina Lynch and her research colleagues want to look into their eyes.
Lynch (’16 PhD Interdis.), assistant professor at Washington State University Spokane’s Department of Speech and Hearing Sciences, and her team have developed a tool that measures how the eyes’ pupils change in response to light, known as the pupillary light reflex. Studies indicate that the eyes of children with autism respond differently than those of other children.
“It’s a sensitive, indirect, noninvasive measure of neurodevelopment and could be an early indicator of autism,” Lynch says.
Since early intervention can reduce the severity of ASD symptoms and improve social interactions, communication, and daily living skills, the eye test could aid the work of health-care professionals like Dawn Sidell, director of the Northwest Autism Center in Spokane.
Sidell works with people with autism and their families. “The objective measurement can help physicians decrease that gap between identification and diagnosis, and increase the speed with which children get referred for treatment and support,” she says.
Lauren Thompson at WSU’s Department of Speech and Hearing Sciences also treats children with ASD. She says it would certainly help children to be diagnosed between 18 and 24 months since the average age of diagnosis in the United States is between 4 and 6 years old.
There’s still a lot that isn’t known about autism spectrum disorder, but detection tools could improve interventions and treatments at an early age.
Georgina Lynch (Photo courtesy WSU Integrative Brain Function and Neurodevelopment Lab)
Eyes tell the story
The idea for a portable eye-screening tool came to Lynch as a speech pathologist interacting with autistic children.
“I wanted to work with children and help them with communication needs, and that immediately led me to working with autism spectrum disorder,” she says. “Many of these kids are late talkers or they’re not talking at all, so speech pathologists are on the forefront of working with this population.”
She watched parents struggle through the cumbersome process of pursuing a formal ASD diagnosis for their child, and wanted to help with an earlier, objective detection test.
Lynch would also often see kids with ASD affected by lights. “While working with these kids, it was really common to see shielding against the light and dilated pupils even under really bright light in our treatment rooms,” she says.
“Often kids across the spectrum were wearing caps or tinted glasses. This photosensitivity stood out to me.”
She notes that speech pathologists are trained to spot sensory issues and work to mediate them, such as turning down the lights. Lynch started thinking about the autonomic nervous system and cranial nerves that modulate both hearing and musculature for speech—and the pupillary light reflex.
Lynch received her interdisciplinary doctoral degree in neuroscience and psychology at WSU and began researching a tool to measure the eye reactions of children with ASD. They started with a more cumbersome binocular device in a lab, but found a smaller monocular device worked just as well in tests.
Trained clinical providers could use the handheld monocular pupillometer device to measure one eye at a time of a child. The researchers found that children with autism showed significant differences in the time it took their pupils to constrict in response to light. Their pupils also took longer to return to their original size after light was removed.
A pediatrician wouldn’t need to administer the quick test. “It takes two to three minutes to do this test. A medical assistant or anyone working with kids in a medical setting can be trained to do this,” Lynch says. A pediatrician could then interpret the results.
“Our hope is that this tool may be able to identify ASD as young as 18 months,” she says.
Lynch and her team’s next step will expand testing to a group of 300 or more 2- to 4-year-olds across a number of clinical sites, such as Seattle Children’s Hospital, with funding from the Washington Research Foundation. The results could validate the device’s efficacy in younger kids and provide benchmarks for pediatric providers.
Meanwhile, Lynch is filing for Food and Drug Administration premarket approval for the device through her start-up company Appiture Biotechnologies, with support from WSU’s Office of Commercialization.
“Washington Research Foundation has been particularly supportive,” she says. “They understand the value of science that really helps change lives of people here in our state. We don’t want to leave it in the university, where it may never see the light of day.”
Lynch emphasizes that she doesn’t do this research alone. Among her collaborators is third-year WSU medical student Lars Neuenschwander (’19 Bioeng.), who started working on the eye measurement device as an engineering undergraduate student.
“I like to say this is a whole community rallying around this research,” Lynch says. “We’re here for them as researchers at a land- grant institution. And locally, the Northwest Autism Center has been with us since the beginning. They’re testing a whole lot of kids to help us build the data set.”
Lynch wants to see the pupillary screening tool get in the hands of providers, but she recognizes that it could be a while and that it’s just one step.
“This test will not help kids learn to talk, but it will absolutely help get them in with the right people who can assess what needs to happen to move that process along.
“I’m careful to say this isn’t a be-all and end-all,” she says. “That’s the last thing we need in the autism research community. It’s just one more piece of the puzzle. And I hope it helps build confidence for a health-care provider to start the assessment.”
Dawn Sidell (Photo courtesy KXLY)
The value of screening
Although the new pupillary reflex test is still in development, there are already several behavioral screening tools that can be used to identify children who may be at risk for ASD. The Modified Checklist for Autism in Toddlers (M-CHAT) and the Early Screening of Autistic Traits (ESAT) rely on extensive interviews and multiple sessions.
“Historically, the diagnosis of autism has relied on interview and observation by qualified providers to make a diagnosis,” Sidell says. “We’re pretty excited about the research that WSU has pioneered in the use of biometrics and contributing to the diagnostic process.”
Sidell, who received her nursing degree in 1987 at the Intercollegiate Center for Nursing Education in Spokane, says the American Academy of Pediatrics has established that the diagnosis can be made as young as 18 months. However, despite the exponential increase of autism identification in recent decades, there hasn’t been a whole lot of success in improving the speed with which diagnosis gets made.
“We still see it languishing around age 4,” Sidell explains. “Speeding up that process would be very helpful to children and families.”
Gillian Brundage, clinical supervisor at the Northwest Autism Center, agrees. “If we can pack in as much learning in the first few years for any child, that’s going to make a huge difference to their future. And having the appropriate tools influences the trajectory of that learning,” she says.
The Northwest Autism Center, which has its twentieth anniversary this year, serves as an Inland Northwest resource for people with ASD and their families. The center helps them navigate challenges such as finding a good place to get a kid’s haircut or accessing dental services from people knowledgeable of sensitivities. The center is also a certified Behavioral Health Center of Excellence.
As the only state nonprofit that provides direct treatment services, people from all over Washington call for free ASD screenings. “It’s not a diagnosis,” Sidell explains. “But if screening results are positive, it gives people information to pursue further evaluation with a qualified physician.”
Sidell has a son with autism who’s now 28, but there weren’t many resources when their family moved back to Spokane in 2000. She notes that insurance didn’t cover treatment of ASD and there were only two pediatricians who specialized in evaluation and care of autistic children.
The community pulled together and launched the center three years later. It helped fill the gap, and Sidell says the center has worked very closely with the state’s Health Care Authority, WSU, and the University of Washington to coordinate local training for providers so that they can meet state requirements for providing diagnosis and treatment referral.
As of 2014, Washington state covers ASD treatment through private and public insurance. About 50 trained providers now work in the region, and it is much easier for families to access a provider for a diagnostic workup.
Sidell says the center partners with WSU to bring in keynote speakers. “We make those available to the community and to students—in particular, medical students, but also other disciplines that are impacted by the needs of this population.”
WSU students of speech and hearing sciences and others go to the center for practicum and internships.
“We value our relationship with Washington State University so deeply because of their commitment to advancing research in the area of autism spectrum disorder,” Sidell says. “It fits very nicely with our own commitment.”
WSU also assists children with autism directly at the University Hearing and Speech Clinic. Thompson, assistant professor of speech and hearing sciences, says they can identify risk of ASD in children.
Thompson’s research tries to address another big barrier: the quality of current screening tools for individuals. Thompson says that, according to the most recent statistic she has seen, only 17 percent of pediatricians conduct universal ASD screenings across the United States.
“Pediatricians are either not aware of the available tools or the tools don’t work well enough that they feel confident using them in practice,” she says.
Thompson is also curious about intervention models for infants and toddlers with autism, and how some children respond to certain interventions while others don’t.
Thompson and Lynch are codirectors of a new WSU Autism and Neurodevelopmental Program of Excellence, which they hope will launch this year.
Gillian Brundage (Photo courtesy Northwest Autism Center)
Early testing, early support
Everyone involved in supporting autistic children agrees that an earlier assessment will start kids on a better footing.
“With autism, we know there are a lot of evidence-based practices that show it makes a difference when intervention is provided during that critical window of time. And the difference is for long-term outcomes, not just those immediate gains,” Lynch says.
Thompson and the others point out that there are still some hurdles to assisting children with ASD and caregivers.
“It’s not uncommon for families to be told that there’s a 6- to 12-month waitlist to be seen by a provider who has the expertise to actually do the comprehensive assessment,” Thompson says. “That’s obviously too long when we have an optimal window for kids to receive access to intervention.”
Access is particularly tough for people in rural communities. The Northwest Autism Center and WSU are expanding rural outreach through options such as telehealth partnership with parents. More people working in the field will help too. Brundage says the center had more than 200 parents come in last year that they couldn’t serve because of limited staff.
Some underrepresented communities also lag in identification of ASD.
“We know that the sensitivity of the current behavioral screening tool, M-CHAT, for correctly identifying autism drops substantially if you’re from an underserved community or minority group. It’s because of social determinants that reflect how we report on that tool,” Lynch says.
As Lynch and her colleagues measure the effectiveness of screening tools and investigate new tools, they make sure the focus is on the children with ASD.
“When we work with kids with autism, everyone is special. Every single child and every parent has a way of navigating through this process,” Lynch says. “If this tool can help mediate some of that, I will have felt like I’ve made an impact that matters.”
Thompson shares the sentiment. “Research here doesn’t happen in a bubble. The work that we do with families and people with autism in our labs should have a direct and meaningful impact for the families and practitioners in our communities,” Thompson says.
“My hope is really to just help children realize their full potential,” Lynch says. “There’s beauty in neurodiversity. There’s also quality of life in terms of the ability to communicate your wants and needs.
“At the end of the day, it’s really about helping children get to that point. So let’s get them there.”
Justice and autistic teens
Courtrooms are stressful places for young people accused of crimes. Expectations of certain behaviors, like eye contact with a judge, can elevate the tension. For teens on the autism spectrum who struggle with social cues, it might have even more repercussions.
“There might be kids who just can’t stop fidgeting. And the court may interpret that as low self-control or disrespect or not taking the proceedings seriously,” says Laurie Drapela, an associate professor of criminal justice at Washington State University Vancouver.
Laurie Drapela (Photo courtesy WSU Department of Criminal Justice and Criminology)
Drapela emphasizes the need for judges, lawyers, police officers, counselors, and others connected to the justice system to recognize when they should use different approaches for autistic youth.
In the book she coauthored, Law and Neurodiversity: Youth with Autism and Juvenile Justice Systems in Canada and the United States (University of British Columbia Press, 2020), Drapela, Dana Lee Baker, and Cowlitz County juvenile probation counselor Whitney Littlefield recommend a commitment to understanding neurodiversity for better justice outcomes.
For example, Clark County, home of WSU Vancouver, uses a restorative justice framework for juvenile detention alternatives, which seeks to separate the offense from the offender, and then have the young person understand the harm their behavior caused to the community.
When people get involved in the justice system, judges, juvenile probation counselors, attorneys, and juries are looking for understanding and empathy toward people who were harmed. Meeting those expectations can be difficult for autistic people, Drapela says.
Drapela studies the intersection of behavioral health and criminal justice, but she approaches the topic with a personal lens too.
“I’ve been part of autism empowerment for a very long time, having a daughter on the spectrum, who’s now 16,” Drapela says. By the time her daughter was 4, the family saw that she avoided eye contact, preferred parallel play, and had other behavior that led to an assessment of autism spectrum disorder.
Her early assessment, along with family access to support and individually tailored education, contrasts with the experience of children on the autism spectrum who may not be diagnosed or whose families lack resources.
“They fall through the cracks, especially kids who are [from working poor families] or kids of color, and we did see this in the research for the book,” Drapela says. Those autistic children and teens who end up involved in the justice system can face a harder road without specialized assistance.
“How do you do this? What kind of supports are there for working with youth with autism?” Drapela says. “I would love to tell you it’s a linear plan and it’s all worked out, but the bottom line is that it goes child to child, practitioner to practitioner, and jurisdiction to jurisdiction.”
National legislation in Canada guides juvenile justice practice, but the United States has both federal and state guiding policy. In most states, it’s even decentralized to counties. Drapela sees the system in the United Kingdom as a potential model.
Drapela says more advanced training in the UK’s justice system grew from a strong partnership with autism advocates and legislative support from Parliament. Communities that want to build a more robust system could reach out to autism advocacy organizations to create training.
While Drapela and her colleagues studied youth with autism across two countries, gaps remain in understanding connections between neurodiversity, crime, policing, and justice systems.
“We need to do better at studying what’s going wrong, so we can start making better policy decisions,” Drapela says.
Read more
Is there a sleep connection in autism? (Research at WSU on sleep and autism spectrum disorder, WSM Spring 2023)
WSU, Range Community Clinic partner to launch Autism and Neurodevelopmental Clinic (WSU Insider, April 12, 2023)
“Autism 101” (Spectrum)