When Lenore Kubiscko thinks about her son Nickolas graduating from high school, she remembers a feeling of triumph.
“That moment was about him being everything that they said he couldn't be,” said Kubiscko, of Medford. Nickolas has autism, and is severely affected by the disorder, including limited speech and extreme anxiety.
Nickolas’ story — including that day at graduation — was featured in “On the Brink,” a one-hour special that aired on NBC’s “Dateline” on April 12.
Following two NYC-area young adults with autism over the course of three years, “Dateline” watched as they approached 21 — the time at which individuals with disabilities “age-out” of the social services many of them depend on.
“Federal law provides that every child who has a developmental disability like autism can stay in school, or in a program funded by the public schools, up until the age of 21,” said NBC News national correspondent Kate Snow. After that, “there's no federal or state program to take over,” she added, and the responsibility falls solely on families.
“To take that structure away and everything that they know, that's devastating,” Snow said.
In the episode, Kubiscko likened the sudden lack of services for someone with autism to jumping off a cliff.
“Everything that we've worked for, we're taking it away and you will leap off a cliff into nothingness,” she said.
Snow said there are half million children with autism who will “age-out” of government services over the next 10 years. “So this isn't just an issue for people who have autism in their families, this is an issue for every single one of us.”
Kubiscko said her involvement in the show started when she answered an ad from producers looking for autistic adolescents on the brink of aging out. She said signing up was an easy choice because she wanted to give her son a voice.
“Autistic individuals should have the right to advocate for themselves,” she said.
Kubiscko said that when Nickolas was a child, finding the right services was a challenge, saying that the earlier program he was in was, “more about conformity” than “respecting him as an individual” -- something that she and her husband ultimately decided was not the right fit for their son.
Since graduating from Patchogue-Medford High School — and aging out of government programs — Nickolas, now 22, receives at-home services and collects cans to donate the money to the Make-A-Wish Foundation in Suffolk.
Throughout the episode, viewers see Kubiscko struggle to get Nickolas at-home services. He was first put on a wait list, and then Kubiscko needed to find a social worker that would take Nickolas' case.
And while New York has what Snow calls, “a pretty good reputation” in terms of offering services for adults with autism, programs vary “state-by-state.”
For Nickolas and his family, life post-graduation has had its ups and downs, but Kubiskco said they've settled into a good place.
“The adult system presents its own array of challenges,” said Kubiscko, “But the connections we have made are very supportive.”
She said she’s proud of Nickolas and feels “blessed” to watch him as he’s “finding his way.”