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Autism

Suffolk County Executive Steve Bellone and Michael Kessler embrace at a press conference on April 19. Photo by Iryna Shkurhan

By Iryna Shkurhan

Advocates, lawmakers, developers and tenants gathered at ELIJA Farm in South Huntington on Monday morning to announce new inclusive housing opportunities for people with intellectual and developmental disabilities.

Suffolk County Executive Steve Bellone (D) reported that an additional $10 million in funding will go to the development of 10 new housing units in Riverhead through the county’s inclusive housing pilot program.

“We’ve now funded more inclusive housing units in Suffolk County than we have seen in the state,” Bellone said. 

He first announced a pilot program in 2019 to fund projects designed to meet the regional need to develop new housing opportunities. After a successful trial run that saw a necessary demand, the program will now be permanent. A sum of $2.5 million dollars will be allocated every year for the next four years to fund inclusive housing projects for people with intellectual and developmental disabilities. 

The announcement came during Autism Acceptance Month, which Debora Thivierge, executive director and founder of The ELIJA Foundation, called “Autism Action Month.” It also falls under Fair Housing Month, celebrated every April. 

Thivierge founded ELIJA Farm as a nonprofit project in 2016. The farm’s Community Supported Agriculture program offers methodical opportunities for diverse populations and integrates members into the life and community of the farm. 

“For us its original purpose was to empower Long Island’s journey through autism and today couldn’t be a more significant day to kind of mark that mission,” Thivierge said at a press conference in Huntington last week. 

According to the New York Housing Resource Center, there are more than 25,000 adults in Suffolk County with intellectual or developmental disabilities and 63% of them live with family caregivers. Of those caregivers, 25% are over the age of 60.

Ten units in Riverhead were completed earlier this year and are now fully occupied by individuals eligible to receive services through the New York State Office for People with Developmental Disabilities. 

Gateway Plaza, developed by G2D Group, was bought as a 64-unit apartment building in Huntington Station. Part of those units will be devoted to people on the autism spectrum. 

It is the only apartment building in Huntington with a doorman and its ground floor has about 14,000 feet of commercial space.

“We’re doing everything we can so that all the individuals in our community and across our country have the opportunity to live their best lives, to reach their full potential and that they have equal opportunity to do so,” Bellone said.

Developers believe that the quality of life will be much better for these individuals if they live in an accessible and walkable area of town. With opportunities even on the first floor, residents will be exposed to integration efforts as opposed to living in a remote place and being isolated from their community. 

Jason Harris, 22-year-old son of Thivierge and self-advocate moved to one of the Huntington units in February. 

“It’s been the greatest experience I’ve had so far, and it feels like I have my independence,” he said. “But I’m not feeling alone.”

The ground floor will have a cafe and office space where residents will have an opportunity to work and be integrated in the community as well as the commercial side of Gateway Plaza. 

“This is a game changer for people with autism, and intellectual and developmental disabilities,” said Patricia Calandra, master housing navigator at the New York Housing Resource Center. “We are so grateful to be able to start this bigger, better model of acceptance and inclusion for our loved ones in the local community.”

Calandra is the mother of Joey and Jenna, who are both on the autism spectrum, and have lived independently in a community apartment complex in Coram for the last four years. 

She mentioned all the ways her adult children have gained independence and a sense of community from living alone, despite their disabilities. They’ve built relationships with neighbors, taken on work opportunities in the community, and gained the confidence to get out of their comfort zone and venture out on their own, she said. 

“Autism Awareness Month is now Autism Acceptance Month,” Thivierge added. “And ELIJA really feels that it’s ‘Autism Action Month’ because we have to start doing things that are really going to make change.”

Photo by Julianne Mosher

There’s a place for people of all abilities to play soccer, and it’s right in Centereach.

TOPSoccer is a new program within Middle Country Children’s Soccer devoted solely to children with physical, mental or behavioral disabilities.

Rob Draper, a financial advisor at Draper Asset Management in Smithtown and club president of SB Athletico Soccer Club, said he wanted to provide a place where all different types of people can run, play and score goals together without judgment or fear. 

“Soccer helped me experience my kids’ childhoods,” he said. “With soccer, there were times where I would go, ‘Wow. That’s great,’ and our goal is to give those moments to these parents so they can experience it, too.”

Draper teamed up with Dave Phaff, also of SB Athletico, and James Malone, president of Middle Country Children’s Soccer to make this dream a reality.

“We’re all just good-hearted people that just really enjoy working with children and watching them grow into young women and men,” Phaff said. 

Officially kicking off last weekend, the program is made up primarily of skills sessions that help teach the participants the game of soccer, while at the same time providing them with an environment that is fun and pressure-free.

Phaff said the whole process took less than three months to get off the ground, and everyone was immediately on board. 

Joining the team is Tara Phaff, Dave’s wife — who is also a Doctor of Physical Therapy — who helped create the best plans for each individual participant’s needs.   

According to Middle Country TOPSoccer, the team encourages any child or adult who is differently-abled to get involved — and its 100% free.

With no questions asked, Draper wanted to fund the program for the families who decide to join in.

“Rob said to me, ‘I really want to start a special needs soccer program and I’ll fully fund it. I don’t care what it costs, I’ll fund it,’” Phaff added. “He has a great heart.”

While other soccer clubs do encourage inclusivity, Phaff said there aren’t too many locations where kids of different abilities can play further out east. That’s why Centereach was a great, central spot to get the ball rolling.

On Saturday, April 10, the group held its opening day at Oxhead Road Elementary School where 25 individuals, ranging in ages five to 55, headed to the field to kick, run and enjoy the sunshine. 

Some of the participants have Down syndrome, some on the autism spectrum and two children were able to play soccer from their wheelchairs. One thing they all had in common was the giant smiles on their faces.

Each player, Phaff said, gets a buddy that works with them every practice. These buddies are volunteers and soccer players, themselves, who help the individual and stand beside them the whole time — and they are anticipating even more players to come join them this season.

“The whole purpose of this is to give these kids an opportunity to be accepted and feel like they are part of something,” Phaff said. “So, we won’t turn anybody down.”

TOPSoccer has their practices every Saturday at 10 a.m. at Oxhead Elementary School in Centereach. Families who are interested in joining can register online at mccsoccer.org.

Matthew Mazza and Jerry Varrichio flank their instructor Walter Vendura as they receive their black belts Nov. 21. Photo by Julianne Mosher

They love coming to their martial arts classes on Saturdays.

“Matt can’t wait to go to karate,” his father Jim Mazza said. “He’s disappointed when he can’t come or if there’s no class that week.”

Jerry Varrichio and Matthew Mazza sporting their new black belts. Photo by Julianne Mosher

Matt Mazza, of Smithtown, and Stony Brook resident Jerry Varrichio are both 19 and on the autism spectrum. They began their martial arts journey a decade ago at Long Island Traditional Tae Kwon Do under the leadership of grandmaster Walter Vendura, owner and head instructor of the martial arts studio. 

On Saturday, Nov. 21, both Mazza and Varrichio earned their first black belts. 

In a three-hour presentation, the two students presented their moves and skills to a small group of family and friends. They’ve been practicing two-to-three times a week, according to Vendura, since they were little kids.

Originally located in East Setauket, Vendura and his team chose to close their doors due to COVID-19 back in March, but that didn’t stop them from continuing the practice of martial arts elsewhere.

Matthew Mazza kicks a wood plant to earn his first-ever black belt. Photo by Julianne Mosher

During the summer, they began renting out space on the third floor of the Port Jefferson Village Center every Saturday. With masks on and limited in number, the students would continue to learn balance, find strength and break wood planks just as they did before. 

Vendura said he has made it his mission to welcome and train individuals of all abilities. Over his 50-year career practicing martial arts, he recently earned his own 8th degree black belt, while also training students at various levels of skills. The instructor has taught people who are blind and deaf, as well as those on the autism spectrum.

“We care about the growth of the student,” Vendura said. “We hope we can encourage them to continue the leadership within themselves, not only in martial arts but in life.”

Both families of the new black belt holders said they originally had trouble finding a studio that was accommodating and welcoming to students with disabilities. 

“They understand him,” Jim Mazza said. “It’s not just about the money — they care.”

Varrichio embraces his dad after receiving his belt. Photo by Julianne Mosher

Kathleen Mazza, Matt’s mother, added that the Tae Kwon Do studio was able to reach her son on an entirely different level. 

“They have a unique skill that no one else has,” she said. “They have knowledge, patience and understanding about people on the autism spectrum.”

Josephine Varrichio agreed, saying her son has grown so much during his time practicing martial arts. 

“Despite all the obstacles and his disability, we’re so proud of him and how far he has come,” she said. “No one here ever gave up on him.”

Mazza embraces his mom after receiving his belt. Photo by Julianne Mosher

And that hard work paid off. With the accomplishment of receiving their first-ever black belts, the two had fun all the way. 

“Breaking the board was my favorite,” Matt Mazza said. “I like sidekicks and I like coming to karate.”

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.”

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.

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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Stacey Wohl, center, with her daughter at her shop Be(Cause) Lifestyle Boutique in Wading River. Photo from Wohl

By Leah Chiappino

Local entrepreneur Stacey Wohl has moved her store, Be(Cause) Lifestyle Boutique, which first opened Nov. 22, from its original East Northport location to Wading River Square. Despite the change in location, it still has the same mission, to give people with disabilities a chance at employment.

In 2015, Wohl opened Cause Cafe in Northport, a restaurant that employed people on the autism spectrum, with the help of her parents, Susan and Gerald Schultz. Her interest in doing so was taken from her own two children, Brittney, 22, and Logan, 20, both of whom have autism.

Wohl says the business struggled because of the lack of a nonprofit being able to subsidize the rent. Her children were unable to work in the kitchen as the environment could get chaotic, and it grew very loud. 

“When you own a business, you have to do everything, and I am not a chef,” Wohl said. “It was a very large undertaking that we weren’t prepared for.”

Despite putting her best efforts into it, Wohl was forced to shut down the restaurant when it was not able to sustain itself and personal tragedy struck. In 2016, Cause Cafe was featured on the Rachel Ray Show, which sent Wohl on a cruise with her children and parents. Two days into the trip, her father had a heart attack while dancing with her mother on the ship and passed away. 

When the family returned home, Wohl closed the doors, as she felt the need to care for her mother, who was mourning the loss of a husband of 55 years.

Wohl’s first love is fashion, having been a showroom salesperson, fit model and boutique owner in her 20s, so she opened Be(Cause) Lifestyle Boutique in East Northport. However, tragedy struck again when her mother passed away three weeks later. Wohl relocated to Wading River after her daughter got accepted to a day program in Abequogue.

“I saw the need for a place like this,”
Wohl said. 

The front of the store has a coffee bar with repackaged baked goods to take home, complete with inspirational coffee mugs for sale. The back of the store is filled with apparel and gifts that mostly come from women-owned companies and charitable causes. There is local artwork for sale as well as her own coffee brand. 

“I want the store to be a place where people go to buy a gift, and not just feel like they are doing something for charity,” Wohl said. 

Recently the business has been struggling. Business boomed over Christmas, but after the holidays business slowed down. 

“I only sold one $3 dollar cup of coffee today,” Wohl said. However, she affirms the community has been very supportive. Wohl hopes that people will make the store their go-to place to grab a cup of coffee and is even looking to expand to have art classes and job training. She is also hoping to make a clothing line from her former fashion background. 

“I lost that part of myself in [dedicating myself to my children] for the past 20 years.”

The boutique is located at 6278 Building A, #2 along Route 25A in Wading River and is open Wednesdays from 10 a.m. to 4 p.m., Thursdays and Fridays from 10 a.m. to 5 p.m., Saturdays from 9:30 a.m. to 5 p.m. and Sundays from 11:30 a.m. to 5.p.m. Online ordering is also available through the boutique’s website at www.becauseboutiquecafe.com.  

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Smithtown decked out for autism awareness. Photo by Alexandra Damianos

By Donna Deedy

The Town of Smithtown held a special Light the Town Blue ceremony in front of Town Hall April 3. Local families and members of the community living with autism joined with elected officials and town employees in the ceremonial kickoff for the month-long campaign. 

The ceremony was led by 21-year-old Brendan Lanese, who lives with autism, and his family. Prior to the lighting ceremony, Lanese invited any residents living with autism to assist him in illuminating the town in blue.

For the duration of April, blue lights and giant puzzle ribbons, the Autism Society’s official symbol for autism awareness, will embellish major landmarks throughout Smithtown, including Whisper the Bull, Town Hall, the Smithtown Parks and Highway Department grounds. 

In 2018, Councilman Tom Lohmann (R)and Parks Director Joe Arico helped to revive the tradition, which began for the first time in April 2015. Residents can pick up free blue light bulbs at the Town Council Office, 99 West Main St., Smithtown.

For more information, call 631-360-7621.

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.

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.”