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Suffolk Aspergers/Autism Support and Information

When two Mount Sinai moms whose sons fall on the autism spectrum noticed a lack of support and resources in Suffolk County to help families affected by the disorder, they took to Facebook to form “a little support group” — made up of 12 moms in a living room.

A year and a half and 1,500 members later, the nonprofit Suffolk Aspergers/Autism Support and Information has blossomed into a haven for those dealing with disabilities, enriching the lives of special needs families through essential services and programs, as well as emotional and financial support.

“We’ve literally become an autism family,” said SASI co-founder Priscilla Arena, whose 10-year-old son was diagnosed at a younger age. “We feel a great sense of responsibility to every single parent and child and doing the right thing by all of them. I’m doing this not just for my son, but for everyone’s children because we need to do this.”

Shoreham resident Alonna Rubin, on right, and her son Jack, who has autism, during Suffolk Aspergers/Autism Support and Information’s Blue Party fundraiser.Photo by Kevin Redding

While the group grows at an exponential rate, as does autism diagnoses throughout Long Island. Its founders, Arena and Stephanie Mendelson, took their outreach for autism to whole new heights June 8 with their first annual Blue Party fundraiser.

In a grandiose ballroom at The Inn at East Wind in Wading River, hundreds of local residents, business representatives, elected officials and celebrity guests dressed in blue, the official color of autism awareness, danced the night away to live music and took part in casino gaming, raffles and auctions all in the name of SASI and autism.

Sponsors of the gala included Sky Zone Trampoline Park in Mount Sinai, Powerhouse Gym in Miller Place and Investors Bank in East Northport. An international theme was represented by cuisines from different cultures because, as Arena said, “Autism doesn’t discriminate based on race or socioeconomics.”

All funds raised went toward a physical office for the nonprofit, as its members currently meet once a month at Mather Hospital, and the expansion of the nonprofit’s numerous programs for families, including their Life Skills program, a 12-week program that teaches teenagers and young adults how to be independent — everything from tying their shoes to reading off a menu and paying bills.

Mendelson, whose eight-year-old son Jacob struggles with motor skills, speech delay and overwhelming anxiety as a result of his autism, said she realized early on that he wasn’t meeting the milestones his twin sister was. When she and her husband got the diagnosis, she said she felt a mixture of relief and profound sadness.

“We felt alone with everything that was occurring with our son, and heard about the group … he now has friends he can relate to. We’ve learned a lot … it’s incredible and I don’t feel like I’m alone.”

— Lisa Gerstein

“My instinct was to wrap him in a cocoon and protect him,” Mendelson told the room. “I realized at that moment that it was my job to be his advocate, his coach, his teacher, his biggest fan. I felt overwhelmed and scared at the idea of his outcome and future resting on my shoulders … nevertheless, we began our journey and immersed ourselves in the world of autism.”

After she met Arena at a business meeting in late 2015, the two shared a desire to provide families a place to go where they didn’t have to feel as lonely and isolated as they did.

Part of the $7,000 donated to the advocacy program will help parents struggling to get proper services within school districts and raise awareness and acceptance among regular kids. The group does not yet know the grand total raised during the event, but the goal was $50,000.

“We want to be the autism resource center in Suffolk County, a central resource for parents no matter what their issue is,” Mendelson said. “And if we don’t know, we can find somebody who does.”

Monica Nichols, who serves as parent liaison at New York Therapy Sensory Gym & Speech and Language Center in Port Jefferson Station, which provides programs and social skills groups for those with autism, said connecting with other parents helped her most when her own child was diagnosed.

“By far, for me, the most valuable resources have been other parents, because it’s really from other parents where you learn what’s out there in a more meaningful way than what a doctor can tell you — it’s what makes it special,” Nichols said. “[SASI] has been a big shift, they’ve really done a great job at outreach and membership and making each individual family feel part of a bigger family.”

When Lisa Gerstein, of Centereach, first joined the group in its beginning stages, things got better quickly.

“We felt alone with everything that was occurring with our son, and heard about the group … he now has friends he can relate to,” Gerstein said. “We’ve learned a lot in terms of what to do with dealing with the school district and what to ask for … it’s incredible and I don’t feel like I’m alone.”

Suffolk Aspergers/Autism Support and Information founders Stephanie Mendelson, on left, and Priscilla Arena, on right, with former World Wrestling Entertainment competitor Mick Foley at SASI’s Blue Party fundraiser. Photo by Kevin Redding

Daniel Korcz, a 22-year-old college student with autism, who hopes to mentor young people on the spectrum, said the nonprofit has brought him a lot of happiness. “It’s pretty amazing that there’s an organization to help people like me, who are smart kids that are on the spectrum,” the Islandia resident said. “It provides them support and assistance that they might need.”

Among some of the entertainment of the evening were TKA, a Latin freestyle trio prominent in the 1980s and early 1990s, and former Anthrax singer Dan Nelson, who performed Beatles and Elvis songs with his band “Dan Nelson and The Downfall.”

World Wrestling Entertainment Inc. Hall of Famer Mick Foley, of Smithtown, showed up to the fundraiser willing to help in any way, as the cause hits him close to home. His 16-year-old son Mickey is on the spectrum.

“This is an issue that kind of chose me, so I readily agreed to be part of this,” Foley said, adding he hopes this is a big success for the group.

Discussing his experience as a parent of an autistic child, he said he wished he’d been more aware.

“I look back at the videos when he was much younger and realize I should’ve known a long time ago,” he said. “I think it’s important that people become aware and acceptance is incredibly important. Learn as much as you can, find a great support group and don’t feel like it’s the end of the world because it’s not. Being the parent of a child with autism is definitely a struggle, but it’s also a great adventure.”

Participants at the SASI Family Fun Day held last month in Huntington. Photo by Rebecca Anzel

By Rebecca Anzel

A young scientist at Stony Brook University has received a $2.3 million grant to fund research he hopes will eventually lead to new therapies for the treatment of autism spectrum disorder.

Matthew Lerner, Ph.D., is an assistant professor of clinical psychology at Stony Brook University, and director of the Stony Brook Social Competence and Treatment Lab, the focus of which is learning to understand how children and teens with ASD form friendships.

“We use the word lab loosely, only because we collect data there,” he said. “It’s a fun space with games and activities for kids.”

“Matthew Lerner is sort of a pioneer in his thought process, and that’s what makes him special to me.”

— Priscilla Arena

His work thus far has ranged from lab-based studies — evaluating and developing tools to measure what is happening during social interactions and how the brain processes those interactions — to real-world applications. Lerner’s previous studies ask how, when and if kids make friends, and what helps them do so.

Efforts to link these two levels of analysis have never been done simultaneously — until now. Lerner won a highly competitive National Institute of Mental Health award to fund his innovative approach to studying social behaviors of children with ASD.

“It’s kind of remarkable that it really hasn’t been done in quite this way before,” he said. “We presume that these things — lab-based measures of how kids think about social interactions and real world interactions themselves — are linked, because otherwise, why would we look at them? But how they’re linked, and importantly, how we can understand how those links differ across individuals, hasn’t really been done thoroughly before.”

Priscilla Arena, the leader of a support group for parents of children with ASD, said Lerner is excited about the potential the grant gives his research.

“Matthew Lerner is sort of a pioneer in his thought process, and that’s what makes him special to me,” she said. “He sees potential in the future.”

It’s not far from her initial reaction after meeting with the Stony Brook researcher, who asked permission to speak to the parents in her group.

The Suffolk Aspergers/Autism Support and Information co-founder wanted to protect the parents, who have “already been beaten and kicked” by others looking for monetary donations and permission to study their children. But when she met Lerner, she said she knew almost immediately that he was different.

“He’s sincere, honorable, impassioned, smart and cerebral,” Arena said. “I don’t think my first impression of him has ever changed, and I think that’s why, from the get-go, I’ve had respect for him.”

The award, called Biobehavioral Research Awards for Innovative New Scientists, was created in 2009 as a way to provide younger scientists with financial support for research. It is for early-stage investigators who are on a tenure track and have no prior research project grants.

“BRAINS” is earmarked for “the most promising early investigators” and is “one of the most competitive [awards]” NIH offers, according to Lisa Gilotty, Ph.D., program officer of Lerner’s grant. Gilotty is also the chief of NIMH’s research program on autism spectrum disorder.

Matthew Lerner is enthusiastic about finding treatments for those with autism spectrum disorder. Photo from Matthew Lerner
Matthew Lerner is enthusiastic about finding treatments for those with autism spectrum disorder. Photo from Matthew Lerner

Lerner is examining how well various biological and social factors, both independently and jointly, can predict how teenagers aged 11 to 17, with and without ASD, socially interact outside of a laboratory. In the five-year project, he and his team are also studying how those factors correlate, and which best explain the resulting social behaviors.

They are hoping to use information gleaned by observing the teenagers inside and outside the lab to make precise predictions about how they make friendships.

Depending on the results, the team might be able to develop generalized patterns that can be applied to a large number of people on the spectrum and be used to create more targeted therapies.

“This is an extremely important study that will shed light on the wide variability observed in social function in ASD,” said James McPartland, director of the Yale Developmental Disabilities Clinic. “Presently, little is understood about the biological reasons for these individual differences. Dr. Lerner’s study will help us understand these differences from both behavioral and brain-based perspectives.”

Dozens of the 260 teenagers — 160 with ASD and 100 without — participating in this study are Three Village students. Lerner and his team have also connected with special educators in the area to see how participants are doing outside the lab in a classroom.

He and his team spend a lot of time in the community, at family events and meetings with parents and educators to introduce themselves, share information about their work and to learn what challenges children are experiencing. Because Lerner wants the work he does to matter to parents and community members, he calls them “stakeholders” in his research.

“The most impressive thing about him is how community-minded he is,” President and Executive Director of Asperger Syndrome and High Functioning Autism Association (AHA) Patricia Schissel said. “It is important that he’s not stuck in a lab. He’s excited to get out into the research community.”

Arena said quite a few study participants are from SASI as well — her son included. Besides hosting support groups, the program, which was co-founded by Arena with Stephanie Mendelson, provides resources and runs events and programs for special needs families.

Arena and her son were asked to complete a 500-question survey as part of the screening process, and have committed to 20 weeks of social groups.

What appealed to her about this study is Lerner’s concentration on trying to develop more effective treatments and therapies for ASD as opposed to looking for a cure.

“I always say, unless you’re going to do a lobotomy, [saying there is a cure] is baloney,” she said. “You can calm certain conditions of it down through behavior modification and therapy, but you cannot cure it. There’s no way to reverse how the brain has been formed. My son will have it forever.”

Schissel said Lerner’s study has the potential to change treatment options for those with autism as genome sequencing did for cancer.

Oncologists previously “threw the kitchen sink” at cancer and attacked tumors broadly. Once genome sequencing was developed, doctors could instead more easily treat tumors directly. Such an approach to ASD therapies would be more effective and “waste less time and enormous amounts of money,” she said.

Michael Greenberg, a social worker for outpatient child and adolescent psychiatry at Stony Brook Medicine, agreed that more specific treatments and therapies are more efficient and effective.

“It creates an opportunity to have the odds be the best the first time,” he said. “No one can predict what he’s going to find, but he’s trying to come up with something that can be replicated and benefit people more widely.”

The results from Lerner’s study might also be applicable to children without ASD. He said it is unclear whether the social patterns he and his team might uncover are unique to kids with autism. There is a potential for any treatments that stem from his findings to benefit any kid who struggles socially.

By Rebecca Anzel

Melonie smiled as she watched her son Justin-Joseph, or J.J. for short, land several backflips on the trampolines at West Hills Day Camp in Huntington on Saturday. The activities at Suffolk Aspergers/Autism Support and Information’s first annual Family Fun Day — zip lines, face painting, sand art and a water slide, in addition to the trampoline park — were the perfect outlet for J.J.’s vast supply of energy.

J.J. is on the autism spectrum — Melonie is, too. “People look at us differently,” she said. “For me, it’s important for J.J. not to have that painful experience.”

SASI, a not-for-profit support group that provides special needs families with helpful resources, provides that sense of community Melonie wants for J.J. Founded in the living room of co-founder Stephanie Mendelson on Dec. 4 of last year, SASI has grown from 12 parents to over 700 families throughout Suffolk County and across the rest of Long Island in eight months.

Co-founder Priscilla Arena said Family Fun Day was meant to be an event for children on the autism spectrum to have carefree fun, and a way for families to bond.

“[I’m excited] for our kids to make friends — to see them smile. Here, they’re part of one community.”

—Priscilla Arena

“[I’m excited] for our kids to make friends — to see them smile,” she said, tearing up. “Here, they’re part of one community. They are the popular kids in SASI.”

Mendelson and Arena, both from Mount Sinai, have children on the autism spectrum. They found there was a lack of resources on Long Island for families and formed SASI as a support group to fill that void.

“Parents found themselves lost, confused, hopeless, alienated, isolated and alone,” Arena said. “SASI created an environment where they could come together and share their stories and experiences.”

To its members, SASI provides information about available resources, advocacy, financial and emotional support. On the last Friday of every month, the group hosts speakers at John T. Mather Memorial Hospital in Port Jefferson — so far, families have heard from a representative from Parent to Parent, a state planning attorney, a Medicaid broker and a parent advocate for education.

The group’s first speaker, special education advocate Danielle Brooks, was at Family Fun Day giving free advice to families. She said SASI is a special organization because it built a caring network for families in a short period of time. The event, she said, was a great opportunity for children to have fun in a safe environment.

SASI also hosts a birthday party club for its member’s children, who range in ages from kids just shy of 3 years old to adults in their late 20s. Arena said children on the autism spectrum have difficulty making friends, so sometimes there are not many others to invite to a child’s birthday party. The group is also working on a lending library, which will help members borrow books donated to the organization; a job skills program; life coach program and blue pages resource handbook, which would help parents find services they need across the island.

Legislator Sarah Anker (D-Mount Sinai) said she is “thrilled and excited” that Arena and Mendelson founded SASI. Instead of complaining about a lack of resources, she said, the SASI co-founders work hard to address issues.

“I think SASI will be able to address problems and advocate with a stronger, louder voice.”

—Sarah Anker

“I’m really supportive and beyond happy that Priscilla has taken this concern and made it into a centerpiece to gather around — creating this organization so people have a place to go for information and resources,” Anker said. “I think SASI will be able to address problems and advocate with a stronger, louder voice.”

The group has also gained the attention of U.S. Rep. Lee Zeldin (R-Shirley), who is sponsoring a bill to ensure Americans with disabilities have access to necessary health-care equipment.

“In Congress, one of my top priorities is ensuring that all Americans with disabilities have the resources they need to live independently and happily,” Zeldin wrote in a statement. “I thank the Suffolk Aspergers/Autism Support and Information group for their work in our community to help children and adults with disabilities.”

Family Fun Day was held at West Hills Day Camp in Huntington, a facility famous for its autism-friendly Gersh Academy. The facility donated the space for the event, which Anker said had about 800 attendees.

In addition to the attractions, the event also had refreshments from Crazy Crepes, Mr. Softee and Kona Ice. Families could purchase t-shirts or raffle tickets to win one of many donated baskets.

The event was just the first of many more to come, Arena said. “We’re new, but we’re just getting started.”

For Melonie, Family Fun Day was the perfect way to spend time with her son.

“It’s everything to see smiles on all the kids faces,” Melonie said. “They don’t get this a lot.”