Meet the trailblazing mom who is making life better for people with autism

Jackie Ceonzo knew something wasn’t right when her firstborn son Joey started to have seizures at 18 months old.

“That began a journey of going to doctors all up and down the East Coast,” Ceonzo told ABC News. Nearly two years later, Ceonzo and her husband Joe got their answer. “He was about 3 when autism first came into our world,” she said.

Unable to speak, read, or write, Joey was diagnosed with “severe autism,” a neurodevelopmental disability that doctors were still learning about nearly 30 years ago.

“There was no national understanding of autism,” Ceonzo said. “When I’d say he's autistic, people would say, “Oh, so he can draw?” It was like the Wild West of nothing, awful.”

Ceonzo said that when Joey was 8, his 4-year-old brother Andrew, who was developing at a pace considered normal for his age, was busy with school and playdates. Desperate to find something constructive for Joey to do, Ceonzo tried enrolling him in a special needs swim program, but he was turned away for being what she said they called “too severely autistic.”

“Imagine being told that,” Ceonzo said, “when you think you belong to part of a community and you're told you're not allowed in. So, where do you go if you can't go to the special needs program with your special needs kid?” Ceonzo asked. "Joey didn't have anybody, so I said, ‘Well, I'm just going to make a world for you,’ and that’s what we did.”

That world is called SNACK*, an acronym for “special needs activity center for kids and adults” to help those with disabilities thrive and lead independent and purposeful lives.

While still working in the textile industry in 2003, Ceonzo started a two-hour weekly class for half a dozen kids like Joey. At the time, it was the first of its kind in New York City.

Twenty-two years later, her nonprofit has grown to a seven days-a-week program with classes and activities including cooking, art, music, and swimming for more than 200 members, including about 50 adults -- what Ceonzo calls “the forgotten population.”

The Centers for Disease Control and Prevention estimates there are at least 5.4 million adults in the United States with autism.

As they age out of special education programs and lack adequate housing, 87% of young adults with autism live with family at some point, according to the AJ Drexel Autism Institute.

As Joey gets older, Ceonzo says she and her husband are most worried about what will happen to him after they are gone. “What's the future going to be like for him without us?” she wonders. She says parents shouldn’t be made to “beg” for services, like housing, from the government for their adult children. “Parents shouldn't have to fight for everything.”

One parent who has joined that fight is actor Colin Farrell, whose 21-year-old son James has Angelman syndrome, a rare neurogenetic disorder that is often misdiagnosed as autism. Farrell’s recently launched namesake foundation advocates for those with intellectual disabilities. The Oscar winner told ABC News he is trying to figure out what the next stage of his son’s life will look like now that he is an adult.

“There’s not many options," he said. "The whole system is a bit of a mess. There are a lot of people working very hard, but they’re swimming upstream in a system that’s not really supporting them in the way that it should,” he said.

Farrell said one of his foundation’s goals is access to affordable housing for the disabled. Ceonzo is “thrilled” to have such a high-profile kindred spirit in the special needs world. “He gets it,” she said of Farrell. “I wish I was 20 years younger. I would have kicked a-- with him," she joked.

Ceonzo says SNACK* has evolved along with Joey, who is now 29 years old. Through a combination of members fees and fundraising, it has expanded to include overnight care for people like Joey and his best friend, 28-year-old Andy Shaw, who has been coming to SNACK* since he’s 8.

Shaw’s mother, Margot, says Andy and Joey bonded over their love of ketchup years ago and share it at lunch every day. “I can’t personally imagine my life without Jackie,” she said. “Everything that she's done to foster these kinds of relationships, I never want [Andy] to be without that."

Those relationships extend to the people who work at SNACK*, like Program Coordinator Rachel Butkiewicz. “I think Snack has provided a sense of community for everyone and not just the members, for the staff as well,” said Butkiewicz. “I feel like when I come here, it's like my second home.”

Ceonzo’s son Andrew is proud of what his Mom has built. “What truly makes her a trailblazer is her ability to take risks and face the unknown without fear,” he said. “She left a good job to start a nonprofit with no prior experience in working with special needs kids. There were so many times she could have quit, but she never did.”

Ceonzo says her journey has taught her “the power of one. Just don’t let anybody tell you that you can’t.” As for being a trailblazer? “I don’t know,” she said. “I'm just a mother, a mother who needed something, and so did a lot of others.”