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Matthew Lerner

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METRO photo

By Daniel Dunaief

If an amusement park suddenly changed the criteria that would allow visitors to ride on a roller coaster or log flume, the number of potential customers would suddenly climb.

The same holds true for the number of people whom doctors are diagnosing with autism.

Over time, health care professionals have changed the definition of autism, recognizing the heterogeneous nature of a diagnosis that is often different from one individual to the next.

Debra Reicher. Photo courtesy Stony Brook University

Recently, Robert F. Kennedy Jr., the head of Health and Human Services, suggested that he planned to share a detailed analysis of autism by this September to explain the increase in the number of people who receive such a diagnosis.

Based on numerous reports, Kennedy indicated he would present research findings at the end of the summer that explains why and how the number of cases of autism and other childhood chronic diseases has risen.

“The biggest, most widely agreed reason for the increase in numbers is the broadening of the diagnostic criteria,” said Debra Reicher, Clinical Psychologist and Assistant Professor at the Renaissance School of Medicine at Stony Brook University.

Over her 35 years in the field of autism, Reicher said the definition of autism has changed.

“We are getting better at diagnosing people at the higher end of the spectrum,” she said.

When Reicher started in the field, about 80 percent of those diagnosed with autism also had an intellectual developmental disorder or cognitive delay. That is currently closer to 40 percent.

“We are getting better at identifying people who have good cognitive skills,” and who have autism, Reicher added.

Over time, the male-female gap has also narrowed. Historically, boys and men were more likely to receive an autism diagnosis.

Clinicians are getting better at understanding the presentation of autism in females, who have different symptoms that can fly under the radar.

Girls are more likely to “mask or camouflage” autism, which physicians might miss, Reicher added.

Matthew Lerner

People are also more aware of autism as a diagnosis.

“Young parents are tracking their child’s development and are asking their pediatricians questions,” Reicher said. That leads to earlier detection.

On a smaller but not insignificant level, some studies suggest that older ages of fathers can also contribute to autism. 

“Advanced paternal age is a statistically significant predicator of increased rates of autism,” said Matthew Lerner, Research Associate Professor and Research Director of the Autism Initiative at Stony Brook University. 

Premature babies, who are much more likely to survive today than they were even a few decades ago, can also receive an autism diagnosis as they develop.

More support

At the same time, health systems are not only more actively screening for autism, but they are also providing more support and benefits.

By offering people and their families services, these health care systems are providing people with autism care, making a diagnosis a potential starting point for more care.

“If somebody was diagnosed with autism in the 1980s, there weren’t a lot of things that folks could do,” said Lerner, who is also Associate Professor and Leader of the Life Course Outcomes Program Area at the AJ Drexel Autism Institute at Drexel University.

Some research also suggests a correlation between environmental exposure or pollutants and the incidence of the condition.

Researchers, however,  caution that a correlation doesn’t necessarily indicate a causation, which is a significant challenge in the world of science and medicine.

A correlation may or may not be relevant in the context of a disease or the treatment for it. Researchers who can conclude based on larger and statistically significant samples a cause between something like environmental exposure and a disease can reduce the likelihood of a condition.

To be sure, despite considerable chatter through online forums, the Internet and people who have limited or no medical expertise, people in the autism field have not seen any evidence that vaccines for diseases like measles have any connection with autism.

The studies that were done in the 90s and early 2000s that suggested a potential link between autism and vaccines were biased and were eventually retracted in a journal, Reicher said.

“Research shows no difference in the rates of autism between vaccinated and unvaccinated children,” she added.

Some new or expectant mothers are hesitating to give their children a measles, mumps and rubella shot.

Reicher urges parents to study the issue carefully and to provide the kind of protection that will prevent the spread of infectious diseases and the lifelong consequences of contracting measles.

Reicher suggested that some of the fear comes from the fact that MMR is given around the time physicians recognize the symptoms of autism.

“With vaccines, there’s no evidence to support” a connection with autism, Reicher added.

New research

Researchers and clinicians welcomed the possibility of new studies that might help the heterogeneous community of people with autism.

New work done with “rigorous science that have reputable approaches and ask meaningful questions” could be “fantastic” for people with autism and their support networks, Lerner said.

To be sure, Lerner doesn’t anticipate any major findings in the development of autism, particularly in the context of vaccines or any other speculation that researchers have tested for decades.

The notion that significant studies from around the world that thousands of researchers conducted over the course of decades would suddenly be overturned in the next four months “seems highly implausible,” he said.

Lerner hopes that any focus on autism research that the current administration conducts respects and adheres to the level of rigor necessary to make any changes in diagnosis, treatment or potential causes.

At this point, Reicher, who has spent decades working with a wide range of people with autism, has seen many people with autism live “wonderful, successful, fulfilling lives.” People with autism are “making huge contributions to the arts, to science and to everything in between.”

Understanding and enhancing an awareness of autism through well-documented and rigorous research could help some people with the diagnosis, although a one-size-fits-all approach won’t work for a larger population that has different symptoms and needs.

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Donald Triplett. Photo from Wikimedia Commons/ Ylevental, CC BY-SA 4.0 , via Wikimedia Commons

By Daniel Dunaief

Daniel Dunaief

At a recent national meeting of experts in his field, Matthew Lerner said the gathering paused to toast the remarkable life of Donald Triplett.

Born and raised in Forest, Mississippi, Triplett died on Thursday, June 15 at the age of 89, after a full life in which his family, his community and a medical and research field around him learned about a condition he helped various communities understand.

Triplett was different from other children growing up, and in 1943, after his parents brought him to psychiatrist Dr. Leo Kanner, he became “Case 1” for a new diagnosis called autism.

“Everything we know about autism started with what was learned from Donald,” said Lerner, associate professor in Clinical Psychology at the Stony Brook Neurosciences Institute. “I’m still confident the field would have found its way to autism,” but the interaction between Triplett and Kanner helped establish some of the parameters that define a condition that researchers estimate affects about one in 36 children today.

As with people who have other diagnoses, the reaction people have to those with autism varies.

“There are two broad threads in the history of how we’ve understood, studied and treated autism since the 1940s,” said Lerner.

In one, people consider it a lifetime disability, in which the diagnosis is limiting and stigmatizing.

In the second, people see autism as a different way of being, in which individuals have an opportunity to develop a meaningful and happy life, as was the case with Triplett.

“The idea of autism as being so different and so impairing was the prototype,” Lerner said. Triplett’s life “didn’t follow that trajectory at all. He had a life filled with community in which he felt supported and accepted.”

This second model of autism, Lerner added, is achievable in “far more cases than we may have historically assumed.”

Triplett, who worked at the Bank of Forest for 65 years and traveled the world, had unusual cognitive abilities that set him apart from neurotypical people. He could multiply two three-digit numbers rapidly without a calculator. He also could look at the side of a building and could indicate the number of bricks without counting them one by one. He had perfect pitch.

As he was growing up, he didn’t interact socially in typical ways for children his age. His parents institutionalized him for a year, where he became withdrawn and disinterested. When they brought him back to their home, he became more engaged, earning a high school and bachelor’s degree in French from Millsaps College.

“He may have been the first, but he was far, far, far from the only autistic person who ended up exceeding the horizons set for him when he was young,” Lerner said.

Lerner believed people in the autistic community, like Triplett, have something to teach others about challenging circumstances.

“Kids are going to get where they are going at their own pace,” Lerner said. Being patient and kind and taking time to meet people where they are as individuals can help people grow. Lerner suggested that “we need to be okay with the idea that what that person is going to be is themselves and the best thing we can do is create a space” for that development to occur.

People will develop when they don’t feel like they are failing because people around them are setting expectations that don’t match them or are underestimating what they can do, he added.

“It’s important to feel validated and valued” through life, Lerner said.

Parents of children from a wide range of abilities sometimes hear what their offspring will never do.

People are frequently “proven wrong” by that child in that family, he added.

As for Triplett, Lerner encouraged people to watch the movie ’In a Different Key” about the person later known as Case 1.”

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Stony Brook University: Entrance sign
Matthew Lerner, PhD, LEND Center Co-Director. Photo courtesy of SBU

Stony Brook University is the first institution on Long Island to receive a federal grant designed specifically to train students, professionals, families and self-advocates for the purpose of improving the lives of children and adults with autism spectrum disorder (ASD) and neurodevelopmental disabilities (ND). Called Leadership Education in Neurodevelopmental and other related Disabilities (LEND), the program at Stony Brook will involve graduate level training through the School of Social Welfare, Department of Psychology, and other Health Sciences programs.

The LEND grant, funded by the U.S. Department of Health and Human Services, Health Resources and Services Administration, Maternal and Child Health Bureau, and provided to the SUNY Research Foundation, is a five-year $2.2 million grant that is effective through June 2026. It is designed to provide training and resources to individuals with ASD and NDs, their families and clinicians, as well as researchers and policymakers through the establishment of a regional Center.

The leading goals of Stony Brook LEND are: to increase the number and expertise of clinicians and leaders who are well-prepared to deliver high-quality, interdisciplinary, family-centered and culturally responsive care to those with ASD/ND and their families; through Stony Brook Medicine clinics affiliated with Stony Brook’s Autism Initiative, provide additional services to benefit children in the region; through outreach initiatives and regional collaborations, establish a base of better-informed and trained professionals for the ASD/ND community; and advance research and scientific knowledge about the challenges, needs, strengths, and opportunities of children and adults with ASD/ND and their families.

“LEND will target interdisciplinary, evidence-based clinical training for healthcare professionals and students, alongside the experts themselves, people with disabilities and their families,” explains Michelle Ballan, PhD, Stony Brook’s LEND Program and Center Director, Professor, and Associate Dean for Research in the School of Social Welfare and Professor of Family, Population and Preventive Medicine. “Cultivating a cohort of trained leaders will ultimately advance systems of care across the lifespan, and thereby help to reduce numerous health inequalities children and adults with ASD/ND face.”

Stony Brook LEND will involve faculty representation from 11 disciplines, with more than 65 additional supporting faculty representing several medical sub-specialties and arts and science disciplines. The program will also collaborate with 55 affiliated programs across the region and multiple states, including community agencies, academic medical and research programs, and school districts. There will also be participation by cultural consultants from traditionally underserved communities throughout Long Island.

Michelle Ballan, PhD, LEND Program and Center Director. Photo courtesy of SBU

“LEND is a game-changer whose impact for individuals with autism and other neurodevelopmental disabilities and their families will ripple across Long Island and beyond,” says Matthew Lerner, PhD, LEND Center Co-Director, Research Director of the Autism Initiative, and Associate Professor of Psychology, Psychiatry & Pediatrics. “With the LEND Center, whole generations of families, self-advocates, clinicians, and academics will develop a deeper understanding of the complex network of services and supports available to those with autism and other developmental disabilities, and will learn how best to work together to navigate this network to produce the best quality of life and care.”

Training will begin at the start of the 2021-22 academic year. Each year approximately 300 trainees will take part in the Stony Brook LEND program. Some will be long-term trainees gaining education and clinical training (300 or more hours), medium-term (40-299 hours) and short-term trainees (39 hours or less). All trainees will have access to didactic coursework, clinical workshops, and community-based training. The LEND Center will also work with community partners to provide consultation and continuing education.

The first round of LEND long-term trainee applications are due August 13th, with rolling deadlines throughout the year for medium- and short-term trainees.

For more information, and to apply, please see this School of Social Welfare webpage.

 

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Photo courtesy of Getty Images

An electroencephalogram (EEG) study of adolescents with autism spectrum disorder (ASD) identified a neural signal that may help explain the variation of how those with ASD perceive or understand the mental states of others (called “Theory of Mind”). Led by Matthew Lerner, PhD, of Stony Brook University, the study is published in Clinical Psychological Science.

While challenges with Theory of Mind have long been associated with ASD, it is now known that many people with ASD do not struggle with his sort of perspective-taking. For example, those with increased autism symptoms do not necessarily exhibit increased deficits in the understanding others socially, and vice versa. However, this variability in Theory of Mind is not well understood.

A total of 78 adolescents ages 11 to 17 participated in the study, most with ASD. With the EEG in place, the participants viewed Theory of Mind vignettes of social scenes and made mental state inferences on the characters’ behavior as their brain activity was recorded.

“We know the brains of those with ASD process social experiences differently, yet little work has linked these differences directly to Theory of Mind,” says Lerner, Associate Professor of Psychology, Psychiatry & Pediatrics in the Department of Psychology at Stony Brook. “In our study, we first identified an electrical brain-based marker that relates to Theory of Mind ability in typically-developing teens, and found that it does so in ASD, too. This marker, called the Late Positive Complex (LPC), seems to reflect one’s ability to hold and reflect an idea or situation in one’s mind.”

Lerner and his team found that LPC scores in ASD adolescents related to better Theory of Mind accuracy and fewer ASD symptoms. More importantly, The LPC statistically explained the relationship between ASD symptoms and Theory of Mind accuracy, suggesting that this EEG signal may explain why some individuals with ASD struggle with Theory of Mind.

“Essentially, if this marker is present in someone with ASD, they do not seem to have trouble with Theory of Mind, but if it is absent they do.”

The authors point out that evidence from the EEG study suggests that deficits in Theory of Mind reasoning in those with ASD occur relatively early in the brain process of perception, and stem from difficulties holding an idea or image in mind when it is no longer visible.

They conclude that “the current findings increase understanding of the neural mechanisms implicated in social-cognitive functioning in ASD and further inform clinical practice, research and theory involving social cognition in ASD.”

 

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Jennifer Keluskar. Photo from SBU

By Daniel Dunaief

In the second of a two-part series, Times Beacon Record News Media describes the clinical and research work of Jennifer Keluskar, a Clinical Professor in the Department of Psychiatry at Stony Brook University.

Keluskar and Matthew Lerner, an Associate Professor of Psychology, Psychiatry & Pediatrics (see last week’s paper), recently received a grant from the Office of the Vice President for Research & the Institute for Engineering-Driven Medicine to study the effects of COVID-19-induced social isolation on people with Autism Spectrum Disorder. 

Keluskar spends half her time working at the Outpatient Department of Psychiatry, Child and Adolescent Services, where she provides cognitive behavioral intervention and ASD diagnostic evaluations for youth with autism, and the other half working on the SB Autism Initiative.

The pandemic has challenged young people with autism, as they manage through social isolation and worry about an uncertain future. Many of Jennifer Keluskar’s patients are struggling, with some dreading the return to school in the fall and others grappling with the removal or change in a routine or structure.

Some of her clients have felt increased pressure to organize their time and be productive amid a lack of peer support and without the opportunities to model their performance based on interacting with other students at school.

Through modeling, some students take notes when they notice their classmates writing down concepts or ideas a teacher is sharing or gaining some measure of reassurance when they see that everyone is struggling with the work load.

“This latter point is particularly relevant given the novelty of this situation for teachers as well as the consequent likelihood that they will have trouble knowing how much work to give, especially given the wide variety” of circumstances at home, Keluskar explained in an email.

For some students with autism who have a measure of social-anxiety disorder, the remote learning environment has provided some measure of relief, reducing the difficulty in reading nonverbal cues from their classmates and teachers.

Now that these students are learning remotely, these “social stressors have been lifted,” Keluskar said.

Nonetheless, even the patients who have felt relieved about fewer anxiety-inducing social interactions are starting to develop concerns about a potential resumption of classes in the fall.

Keluskar has already seen some patients who are perseverating on that future upcoming transition. “We are going to see more of it in my clientele as we get closer to reopening schools,” she said, adding that she has some patients who are afraid of not being able to advance in life, to college or to jobs, but who, at the same time, are afraid of taking the next step after getting used to quarantine.

Jennifer Keluskar with her husband Raja, 5-year-old daughter Skylar and three-year-old son Colby.

Working with Alan Gerber, a graduate student in Matthew Lerner’s lab at SBU, Keluskar will assess responses to COVID-19. They have sent out two questionnaires. One, which was released by other researchers, examines how the pandemic has affected circumstances and behaviors, from employment changes to junk food consumption. The other is an evidence-based measure of parental stress that is not specific to the virus. She is going to measure anxiety and depression to see how they change during quarantine. 

Keluskar appreciates how the Initiative offers programs such as a homework club, which students can attend virtually for an hour each day. “I have connected some of my clients in the clinic to undergraduate mentors and so far this has been quite successful” although the scale of these connections has been small so far.

The Initiative currently has a mentoring program geared towards older adolescents. She is planning to offer this program to younger individuals.

Deborah Gross, the Initiative’s coordinator, runs a program called the Sidekicks Squad, which is for older adolescents and young adults with special needs.

“Some of my patients would benefit from pairing with a mentor,” Keluskar said. “Through these mentoring sessions, people with autism hang out with their mentors.”

Child-directed interpersonal time is “so important for people’s well being and development,” Keluskar explained, referring to both the mentor and the mentee.

She appreciates that this mentoring program is laid back and fun and believes that mentors benefit just as much from it as mentees.

Through the Initiative, the group has also done eight weekly, Facebook livestream events. The organizers discuss a topic and add three tips at the end. The tips have provided suggestions, including: using creativity to engage children by adding special interests into activities; taking a collaborative problem solving approach when running into difficulties getting a child to cooperate; and understanding emotional underpinnings to children’s behavioral difficulties.

Keluskar recognizes the challenge that come from having self-directed resources available to children and their parents. Even when people have access to many resources, they do not always know where to begin or what to prioritize, she said.

She advises a parents to try to get enough rest for themselves. “You need to take care of yourself so you can model [appropriate behavior] to your children,” she said.

Through the pandemic challenges, Keluskar also urges parents to be creative in their responses to the stressors that are affecting them and their children. She suggests people to take chances in how they approach their interactions with anxious children.

“You can’t be creative if you’re afraid of being wrong,” she said. “Being able to move past little mistakes shows flexible control. Set limits and be structured, but also be flexible at the same time.”

A resident of Commack, Keluskar lives with her husband Raja Keluskar, who is an engineer, their five-year old daughter Skylar and their three-year old son Colby.

Keluskar said she has been anxious about public speaking since she was young and can empathize with others who struggle with this. Through Facebook groups and other efforts, she said she can “personally attest to the value of multiple exposures and say that it can even become enjoyable with time and practice.”

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On Zoom screen, clockwise from top left, Committee member Hoi-Chung Leung; Committee Member Matthew Lerner; Eve Rosen; Committee Member Nicholas Eaton; Tamara Rosen; graduate student Cara Keifer; and Shira Yudkoff.

By Daniel Dunaief

On April 17, Tamara Rosen did something she had been anticipating for six years: she defended her graduate thesis.

Working in the lab of Matthew Lerner, who is an Associate Professor of Psychology, Psychiatry & Pediatrics in the Department of Psychology at Stony Brook University, Rosen had focused her efforts on the symptoms people with autism exhibit when they are anxious or depressed.

While the questions in her graduate thesis defense followed a pattern she anticipated, with professors asking her about the way she compiled her data and the conclusions she drew, the format wasn’t what she had expected.

Like so many other gatherings that had formerly been public events, Rosen’s thesis defense was broadcast by Zoom. The downside was that she wasn’t in the room with everyone, where she could have a discussion one on one. The upside was that her friends and family could tune in as easily as they do to work calls or other family gatherings. Indeed, Rosen’s mother, Marna; her step-mother Eve; and her father Dennis, all of whom share an appreciation for the work Tammy did for her thesis, watched the defense from start to finish, exulting in a landmark achievement.

“This was a really important day in our family’s history,” Dennis Rosen told his daughter, sharing the pride he felt for her.

“I always knew you were smart, but now I know you are brilliant,” her mother beamed.

After the call, Rosen saw her mother and stepmother overwhelmed with emotions, shedding tears for an achievement she sometimes needs to reassure herself really happened.

Rosen’s work focused on how anxiety and depression, two conditions that mental health professionals are concerned are becoming more prevalent amid the viral pandemic, have different symptoms in the population of people with autism spectrum disorder than they do for those who are not on the spectrum.

Based on prior research, Rosen wanted to account for the different symptoms in her follow-up analysis.

Prior studies have found that the traditional models of anxiety and depression do not adequately fit youth with autism. Others had suggested, but not tested, the notion that the Diagnostic and Statistical Manual model of these symptoms provides an ineffective model of anxiety and/or depression symptoms because of the influence of autism symptoms.

That is why Rosen specifically examined the influence of autism on these conditions in one of her analyses.

Among other findings, Rosen said that autism influences anxiety and depression. The prevalence of anxiety and depression is higher compared to the general population.

There are a range of clinical implications for her work, Rosen said.

Her work validates what clinicians are doing, which is to take the profile of autism into account when they treat anxiety.

Rosen moved to Colorado last July to start her internship year at JFK Partners at the University of Colorado School of Medicine, where she is also starting her post-doctoral clinical fellowship. She is treating clients with autism and anxiety and depression, which she said is in her “wheel house” of expertise.

Rosen is grateful for the support she received from Lerner and the program at Stony Brook. “It was great training,” she said.

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Matthew Lerner. Photo from SBU

By Daniel Dunaief

Though hampered by the pandemic in their direct contact with people who have autism, the founder of The Autism Initiative and research director Matthew Lerner along with the Head of Autism Clinical Education Jennifer Keluskar at Stony Brook University are managing to continue to reach out to members of the community through remote efforts. In a two-part series, Times Beacon Record News Media will feature Lerner’s efforts this week and Keluskar’s work next week.

Through several approaches, including improvisational theater, Matthew Lerner works with people who are on and off the autism spectrum on ways to improve social competence, including by being flexible in their approach to life.

In the midst of the ongoing pandemic, he has had to apply the same approach to his own work.

Lerner, who is an Associate Professor of Psychology, Psychiatry & Pediatrics in the Department of Psychology at Stony Brook University, recognizes that it’s difficult to continue a project called SENSE ® Theatre (for Social Emotional NeuroScience Endocrinology), where the whole function of the process is to provide in-person social intervention.

The SENSE Theater study is a multisite National Institute of Mental Health-funded project focused on assessing and improving interventions to improve social competence among adolescents with autism. The core involves in person intervention through group social interaction.

Matthew Lerner with his sons Everett,6, and Sawyer,2. Photo by Chelsea Finn

That, however, is not where the effort ends.“There are arms of that study that are more educational and didactic,” Lerner said. “We’re starting to think about how we could capitalize on that.”

In the ongoing SENSE effort, Lerner is coordinating with Vanderbilt University, which is the lead site for the study, and the University of Alabama.

Stony Brook is in active contact with the families who are participating in that effort, making sure they know “we are doing our best to get things up and running as quickly as possible,” Lerner said.

The staff is reaching out to local school districts as well, including the Three Village School District, with whom Lerner is collaborating on the project, to ensure that people know the effort will restart as soon as it’s “safe to be together again.”

Lerner is also the founder and Research Director of The Autism Initiative at SBU, which launched last year before the pandemic altered the possibilities for in-person contact and forced many people to remain at or close to home for much of the time. The initiative provides programs and services for the community to support research, social and recreational activities and other therapeutic efforts.

The Stony Brook effort initially involved video game nights, adult socials and book clubs. The organizers and participants in the initiative, however, have “stepped up in a huge way and have created, in a couple of weeks, an entirely new set of programming,” Lerner said.

This includes a homework support club, guidance, webinars and support from clinicians for parents, which address fundamental questions about how to support and adapt programs for people with autism. The group is keeping the book club active. The initiative at least doubled if not tripled the number of offerings, Lerner suggested.

Additionally, SBU has two grants to study a single session intervention adapted for teens with autism. The project has been running for about nine months. Lerner said they are looking to adapt it for online applications. For many families, such remote therapy would be a “real boon to have access to free treatment remotely,” he said.

Lerner had been preparing to conduct a study of social connections versus loneliness in teens or young adults with autism. Since COVID-19 hit, “we have reformulated that and are just about to launch” a longitudinal a study that explores the effects of the lockdown on well-being and stress for people who have autism and their families.

Lerner is looking at how the pandemic has enhanced the importance of resilience. He said these kinds of studies can perhaps “give us some insight when we return to something like normalcy about how to best help and support” people in the autism community. “We can learn” from the stresses for the community of people with autism during the pandemic.

To be sure, the pandemic and the lockdown through New York Pause that followed hasn’t affected the entire community of people with autism the same way. Indeed, for some people, the new norms are more consistent with their behavioral patterns.  “Some autistic teens and young adults have said things to me like, ‘I was social distancing before it was cool,’” Lerner said.

Another teenager Lerner interacted with regularly went to the bathroom several times to wash his hands. When Lerner checked in on him to see how he was doing amid the pandemic, he said, “I was made for this.”

Lerner also said people who aren’t on the spectrum may also gain greater empathy through the changes and challenges of their new routines. People find the zoom calls that involve looking at boxes of people on a full screen exhausting. After hours of shifting our attention from one box to another, some people develop “zoom fatigue.”

Lerner said someone with autism noted that this experience “may be giving the rest of us a taste of what it’s like for folks on the spectrum,” which could provide insights “we might not otherwise have.”

Even though some people with autism may feel like the rest of the world is mirroring their behavioral patterns, many people in and outside the autism community have struggled with the stresses of the public health crisis and with the interruption in the familiar structure of life.

The loss of that structure for many with autism is “really profound,” which is the much more frequent response, Lerner said. “More kids are telling us they are stressed out, while parents are saying the same thing.” In some sense, the crisis has revealed the urgency of work in the mental health field for people who are on and off the spectrum, Lerner said.

The studies in autism and other mental health fields that come out of an analysis of the challenges people face and the possible mental health solutions will likely include the equivalent of an asterisk, to capture a modern reality that differs so markedly from conditions prior to the pandemic. There may be a new reporting requirement in which researchers break down their studies by gender, age, race, ethnicity, income and “another variable we put in there: recruited during social isolation.”

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Hyunsik Kim and Erin Kang. Photo from Matthew Lerner’s lab

By Daniel Dunaief

This is the second half of a two-part series on autism research conducted by Hyunsik Kim and Erin Kang.

 Last week we focused on the work of Stony Brook University graduate student Hyunsik Kim, who used three criteria to diagnose autism. This week we will feature the work of another SBU graduate student in the Department of Psychology, Erin Kang, who specifically explored the types and severity of communication difficulties autistic children have. 

Words and the way people use them can offer clues about autism. Looking closely at pronoun reversals, speech delays, perseveration and 10 other characteristics, Kang determined that the number of features was a “powerful predictor of an autism spectrum disorder diagnosis.” 

In a paper published online in the Journal of Clinical Child & Adolescent Psychology, Kang grouped children from 6 to 18 years old into different subgroups based on their communication patterns and used a statistical method that allows the data to “speak for itself,” in terms of finding groups based on the patterns of how the communication difficulties are associated and to classify them.

According to Kang, heterogeneity is an important feature of autism spectrum disorder. “There has been a greater effort into understanding whether subgroups exist in ASD populations,” she explained in an email. By examining the atypical communication characteristics, she found four subgroups. These groups differed from each other, not only with autism, but on multiple measures, including the occurrence of anxiety or depression and with intellectual disabilities.

The communication difficulties occur at different rates within the autism children throughout Long Island that Kang studied.

Kang said her work has been “building on the previous literature,” although many of the previous studies focused on characterizing autism for children who were younger than 6.

“There are few studies on specific symptoms (e.g., stereotyped speech) across the body of literature,” she explained, adding that she’s passionate about exploring the trajectory of development over time with or without intervention. 

She and her co-authors, Ken Gadow and Matthew Lerner, who are also at Stony Brook University, are working on a follow-up paper that attempts to explore how changes in the pattern of communication challenges examined in the paper relate to other clinical aspects and outcomes.

Kang believes her results have clinical implications that will help in understanding autism. Atypical communication features are a good predictor of diagnostic status. “This can provide an advantage in assessing social communication profiles in autism,” she said. “It’s hopefully valuable in a low-resource setting.”

Parents might be asked 13 questions on a checklist, which could serve as an initial screening for more comprehensive autism evaluations, rather than a multiple checklist that could take a while for parents to complete. The different categories had specific features that distinguished them. 

“There’s been quite a bit of work in the speech and language field,” said Lerner, an associate professor of psychology, psychiatry and pediatrics in the Department of Psychology at Stony Brook University and Kang’s mentor. “This approach allowed us to ask about some of the specific types of language differences we often see.”

Lerner said what Kang found is that specific characteristics do tend to cluster together in “interesting and unique ways that can tell us more about the communicative phenotype of autism.”

One of the groups, which she called “little professors,” had speech patterns with considerable perseveration. In perseveration, a person repeats a word or phrase, even when a question or stimulus that might elicit that phrase no longer continues. As an example, Dustin Hoffman in the movie “Rain Man” frequently repeated the number of minutes until Judge Wapner was on TV.

“These kids would benefit more from a group-based social skills intervention that specifically integrated interacting with peers,” Kang said. People in this group had the highest percentage of wanting a friend, but difficulty with relating to peers.

“They will benefit especially from interventions that help them build skills in interacting with peers,” she explained.

She also suggested that the best way to make a reliable diagnosis is to collect as much information as possible, which could include observations and electrophysiological data.

Kang acknowledged that some of the responses from the parents or teachers of people with autism contain bias. “There can be a lot of potential especially in terms of these subjective measures,” she said.

Indeed, through Lerner’s lab, Kang has been trying to include more uses of neurological measures and other methodology that is less subject to biases.

“Hopefully, by looking at these more objective measures, we can help integrate information from these different levels,” she said.

A resident of East Northport, Kang lives with her husband, musician Sungwon Kim, who works as a freelancer on Broadway musicals. The couple, who have a young son, met in Boston when she was working at Boston Children’s Hospital and he was a student at Berklee College of Music. 

Kang’s first experience with autism was in high school, when she acted as a mentor to a second grader. When she entered college at the University of California at Berkeley, she studied molecular and cellular biology and psychology.

Lerner said that Kang is a “truly remarkable young scholar” and is “among the best I’ve seen at her stage to be able to look at her clinical experiences, which drive the questions that strike at the core of how we understand and treat autism.”

Lerner appreciates how she is driven to understand autism from neurons in the brain all the way up to the classification and treatment.

“She is somebody who is completely undaunted by taking on new questions or methodologies because she has an idea of what they’re going to mean,” Lerner said. “She has worked with [autistic children] and has tried to understand where they are coming from.”

Kang questions assumptions about what autism is, while also exploring its development.

“She is able to see and discover clinical strengths that manifest in the kinds of questions she asks,” explained Lerner. “She is a part of the next generation of where my field is going, and I hope we can catch up to her.”

Kang appreciates the work-life balance she has struck on Long Island, where she feels like the pace of life is “quiet and calm during the week,” while it’s close enough to New York City to enjoy the cultural opportunities.

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From left, Hyunsik Kim, Associate Professor Matthew Lerner and Erin Kang. Photo from Lerner’s lab

By Daniel Dunaief

This is part one of a two-part series on autism research conducted by Hyunsik Kim and Erin Kang.

If someone in a family behaves in ways that are difficult to understand, the family might look for a support group of people with similar characteristics, visit a doctor or seek to document and understand patterns.

Finding a doctor who has seen these types of behaviors, speech patterns or actions before could provide comfort, as the physician may either engage in a course of treatment or provide context and understanding for the current behaviors. The doctor may also offer advice about any likely changes in behaviors in the near or distant future.

For researchers, understanding a range of symptoms, some of which might be below the threshold to meet a specific diagnosis, can lead to a more specific awareness of a condition, which could help guide patients toward an effective treatment.

Hyunsik Kim and Erin Kang, graduate students in the Department of Psychology at Stony Brook University, recently published papers examining autism, hoping to get a more specific understanding of subtle differences and symptoms.

Kim was looking for a better way to conceptualize autism. He used advanced statistical methods to compare three theoretical perspectives to find the one that best characterized the symptoms.

“According to my study, autism is not an all-or-nothing phenomenon, but is dimensional [and is] comprised of three related spectra of behaviors,” he explained. 

Researchers can characterize everyone’s autism symptoms through a combination of levels in each domain.

Each of these three areas can range from very mild to severe.         As an analogy, Kim suggested considering the quality of being introverted. A person can be mildly, moderately or highly introverted, which offers a continuum for the dimension of introversion.

In a dimensional approach that involves exploring these three different categories, researchers can get a better understanding of the symptom profiles.

“For decades, people thought of autism as purely categorical,” said Matthew Lerner, an associate professor of psychology, psychiatry and pediatrics in the Department of Psychology at Stony Brook University. “You either have it or you don’t. In fact, autism was thought of as the easiest diagnosis to make.”

Kim, however, has “a goal of answering the fundamental question: what are we talking about when we’re talking about autism?” Lerner said. “Slowly, autism has morphed from the most categorical to the most dimensional. Literally, people talk about the spectrum when they talk about autism.”

With a dimensional approach based on levels of the three major domains for diagnosing autism, Kim suggested that researchers and doctors could better understand people who fall just below the current diagnosis for autism.

“It’s especially important to identify individuals who show a borderline range of symptoms, who barely fail to meet the diagnostic criteria of a given disorder, and provide them with appropriate treatments,” Kim explained.

Ideally, he hopes a dimensional approach incorporates the severity of symptoms into the current diagnostic system to promote better treatment procedures and outcomes.

Kim recognized that he could have just as easily created a dimensional approach that incorporates a greater number of criteria. His statistical analysis, however, revealed that the three dimensions provide the parsimonious explanation about autism symptoms.

Kim analyzed data from a parent questionnaire. He recognized that self-reporting by parents may underestimate or overestimate the severity of symptoms. He believed the over and under estimate of symptoms likely “evened out.”

Lerner suggests this multidimensional approach has numerous implications. For starters, it can help capture more of the types of symptoms in a diagnosis. It can also highlight the specific area of autism a clinician might want to target.

“We should be focusing on the factors that are most relevant for the individual and which are getting in their way,” Lerner said.

Treating autism broadly, instead of focusing on specific symptoms, may be “misguided,” Lerner added. A more specific characterization of autism could also help advance the field of neurogenetic research. “With more contemporary genetic analysis, we can use findings like this as a road map for what those genetic differences mean,” he said.

For his next step, Kim hopes to expand this work to observational data, adding that to the existing pool of information from parental questionnaires.

“People go on a home visit and take video of autistic kids interacting with others,” Kim said. “We can have some people code their behavior.”

More broadly, Kim would like to answer fundamental questions about the classification and conceptualization of mental disorders by using advanced quantitative modeling and other data-driven approaches. He believes a factor may represent a person’s vulnerability to developing a specific mental disorder.

A high level of this factor, combined with life stressors or adversity, would make it more likely that a person develops a disorder. As someone who studies psychology, Kim said he is well aware of his own emotional patterns and he tries to use his training to help himself cope.

He is not particularly comfortable doing public speaking, but he tells himself that whatever anxiety he feels is normal and that his practice, knowledge and expertise should allow him to succeed.

A resident of Middle Island, Kim lives with his wife Jennifer. The couple has two young children. Kim describes his wife as a “really good” amateur baker, who bakes cakes, muffins, cookies, macaroons, chiffon cakes and more. He has encouraged her to start her own YouTube channel and one day they hope to open a bakery that is online and offline.

As for his autism work, he hopes the dimensional approach is “incorporated into the assessment stage so that individuals do not merely receive a diagnosis, but are informed of their unique symptom profiles, so that clinicians can take them into consideration.” 

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Matthew Lerner, far right, with his lab group at Stony Brook University. Photo from Matthew Lerner

By Daniel Dunaief

An actor draws in members of an audience, encouraging them to understand, appreciate and perhaps even become sympathetic to a world created on a stage. The process of creating scenes for the actor, however, can also change his or her world off the stage.

A team of scientists from Vanderbilt University, University of Alabama at Tuscaloosa and Stony Brook University recently received $3 million in funding from the National Institutes of Mental Health for four years to study how participation in a theater production can help people with autism spectrum disorders.

Matthew Lerner. Photo by Graham Chedd from the Alan Alda Center for Communicating Science

“Theater is a venue for learning and gaining skills,” said Matthew Lerner, an assistant professor of psychology, psychiatry and pediatrics at the Department of Psychology at SBU who is leading the Long Island part of a study that will involve about 240 participants from age 10 through 16. “The process of putting on a play with others and being able to successfully produce and perform that has key benefits to learn and practice.”

Called SENSE Theatre (for Social Emotional NeuroScience Endocrinology), the shows were created by the project leader, Blythe Corbett, an associate professor of psychiatry and behavioral sciences and psychology and investigator at Vanderbilt Kennedy Center, who herself performed in stage plays before pursuing her scientific career.

Corbett writes the plays, which have themes she believes are important not only for autism but also for the general public. The topics include acceptance, belonging and diversity and offer a current of core ideas that are “part of having a condition that is unique,” she said. The plays, which typically have about 20 characters, include music and last about 45 minutes.

Tiffany Adams and Jane Goodwin participate in the SENSE Theatre program. Photo by Steve Green, Vanderbilt University

Corbett explained that the experience uses theater as a platform for teaching fundamental areas that could help people with autism spectrum disorders, including reciprocal social communication, flexible thinking and behavior and imagination.

“It also gives [the participants] an opportunity to be exposed to social situations and to engage with others in a safe and supportive environment,” she said. “They can be John today and Henry tomorrow, which allows them to expand their repertoire in a playful, fun way” which, she hopes, might help them assimilate lessons when the program ends.

Corbett has been developing SENSE Theatre for nine years. This specific multisite project will allow her to see how transportable this program is to other locations, where other investigators who have not been involved with this before can employ it with other participants.

The investigators, which include Corbett, Lerner and Susan White at the University of Alabama, will monitor the participants through psychological testing, social interaction and research EEG, or electroencephalography. This is a noninvasive way of monitoring electrical activity in the brain that involves placing electrodes on or below the scalp. The EEG testing takes about 45 minutes.

Participation is free, although members, who go through a screening process, need to contribute to the research program by completing the evaluations.

The theater program has a control study, calling Tackling Teenage Training, in which participants will “address some of the challenges of being a teen,” which include dating and puberty, knowing how to know if somebody likes or doesn’t like you and how to express desires or interests appropriately, Lerner said.

Savannah Bradley participates in the SENSE Theatre program. Photo from Steve Green , Vanderbilt University

Corbett chose to work with Lerner because of considerable overlap in their interests in using performance to provide clinical help for people with autism spectrum disorders. Lerner “has a very strong interest in theater and is able to understand the core approach” to the training and shows as a form of intervention. He is an “engaging, charismatic individual who is extremely hard-working” and is a “really good choice in terms of harnessing his energy and intelligence.”

Indeed, Lerner and Karen Levine, a licensed psychologist and the co-author of “Treatment Planning for Children with Autism Spectrum Disorders,” developed a model in 2004 for youths with disabilities to work on social skills called Spotlight, which utilized techniques of theater games and dramatic training. Spotlight is a program of Northeast Arc, a human services organization founded in 1954 and based in Massachusetts.

The Spotlight efforts started with nine students and has expanded to include hundreds of families each year.

In early high school, Lerner met someone who would change his life. He was having dinner with the family of a friend of his younger sister’s when he noticed a boy, Ben, playing on his own in another room. Lerner asked if he could play with Ben, who was 2 at the time and was running a car back and forth across the top of a toy playhouse.

Lerner mirrored what Ben did. “He looked at me curiously and kept doing what he was doing,” Lerner recalled. “I followed him around for over two hours.”

A scene from a performance by SENSE Theatre. Photo by Steve Green, Vanderbilt University

Up to that point in his life, Lerner thought the experience with Ben was “the most fascinating two hours of my life.” He had made a connection in which he “loved the joy and challenge of trying to meet him where he was, rather than behave in a way that was consistent with what the world expected.”

Lerner studied philosophy and music at Wesleyan University. After earning his doctorate at the University of Virginia, where his dissertation explored why youths with autism experience social problems, Lerner worked at the University of Chicago and then moved to SBU in 2013.

A native of Swampscott, Massachusetts, Lerner lives in Port Jefferson with his wife Chelsea Finn, a pediatric nurse practitioner in the Stony Brook Hospital Emergency Room and a nurse practitioner at SV Pediatrics in Patchogue. The couple has a 4-year-old son Everett and a 6-month-old son Sawyer.

Lerner is looking for people who would like to participate in the study. They can reach out to him by phone at 631-632-7857 or by email at [email protected]. The first set of students will begin working in the SENSE Theatre program this spring and summer.

Corbett said the participants aren’t the only ones who benefit from the program.

“The overwhelming sentiment from those who come to see the performance is that it changes their perception of what it means to have autism,” Corbett said. After the show, some of the audience members “ask who are the children with autism.”

Parents of the actors are pleasantly surprised by the things their children are able to do, which exceed their expectations. “In one of our previous studies, parents reported that their stress went down” during the program, she said, “which appeared to be in response to the child participating in intervention.”

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