Hofstra conference: Helping young people with autism transition to adulthood

The founder of an organization aimed at educating and assisting people with autism is set to host a conference Saturday at Hofstra University to give parents tips on helping their children transition to adult independence. 

Deb Thivierge, who started The ELIJA Foundation, a Levittown-based nonprofit, said the inaugural conference will offer an opportunity for caregivers to learn about housing and employment initiatives, and talk with experts about transition processes, self-direction, housing, special needs trusts and guardianship.

She said when children with autism become adults, there’s limited support and services for them.

According to the Centers for Disease Control and Prevention, 1 in 36 8-year-old children were identified with autism spectrum disorder in 2020 compared with 1 in 150 children of the same age in 2000, when the agency first began keeping records for that age. The numbers are based on children in 11 communities across the country.

Parents of children with autism "feel a sense of relief when their child graduates high school … just to realize there’s 60 to 70 years ahead of them,” Thivierge said. “I’m trying to bring families and experts and other professionals together to get a comprehensive understanding of the next steps to adulthood."

Rosemary Ortlieb, of Merrick, said when her daughter Katie, 21, was a child, she found it overwhelming to navigate the labyrinth of information for services for autistic youngsters. Now that Katie is in college, Ortlieb said she is focused on her daughter's future. Having experts in the same place at the conference will be helpful , she said.

“I want to have an idea of how I can plan for her independence while I’m here," Ortlieb said, "and when I’m not."

Thivierge founded ELIJA, which stands for Empowering Long Island’s Journey through Autism, after her son Jason, 25, was diagnosed with autism when he was 20 months old.

“When he was diagnosed, I just dropped everything and tried to learn as much as I could about autism because I did not want him to be a statistic where he was going to be institutionalized,” she said.

That led her to create the foundation with a mission to educate parents and other caregivers about best practices for caring for those with autism.

It eventually led to the creation of a private school in 2008 in Bethpage. The school, now in Plainview, has 32 students ages 3 to 22.

Thivierge said parents asked what was next for their children after they age out of the school at 21.

She answered by purchasing a 50-year-old farm in South Huntington and establishing ELIJA Farm in 2016.

In 2017, the Town of Huntington and Suffolk County purchased the 6.3-acre farm to preserve it as open space. The foundation has remained at the farm to continue its work.

The farm, which has expanded to about 10 acres, has eight full-time and two part-time workers and a host of volunteers, many of whom are on the autism spectrum. 

Work on the farm includes planting, tending, harvesting and distributing more than 100 types of vegetables, including lettuce, broccoli and onions, and collecting duck and chicken eggs.

The produce is sold through a membership program.

In April, which is Autism Acceptance, Awareness and Action Month, a market opened at the farm offering baked goods and salads, staffed by those with autism.

Thivierge said the foundation's latest venture will increase and enrich vocational training for employees with autism beyond current farming operations.

Employees will learn how to prepare and store food, and develop customer service and other skills that will get them ready for work opportunities and independence.

“The marketplace is a place where people can communicate and meet people and learn social interaction,” she said.

Agricultural instructor Kimberly Zalepa, 42, who started working at the farm last year, said the farm’s importance to the autism community is immeasurable. She said her autism went undiagnosed for a very long time, causing challenges in employment and other areas of her life.

“This is a place where I’m accepted and I’m looked at as just a person. Nobody talks down to you — it’s all fair and understanding and it’s a safe place to be,” Zalepa said “There needs to be more places like this.”