Turning 21 is a time when most people celebrate their first steps into adulthood. But for young people with autism and their families, turning 21 means the end of their school-funded programs.
It’s a stressful time, when their families — with financial help from the state — must put together the services that will sustain them.
Families that banded together more than two decades ago to establish schools for their young children have set to work again, in some places in New Jersey. They’ve extended the schools’ mission, raised funds and built new facilities to serve their now grown-up kids: adults with autism.
The Institute for Educational Achievement in New Milford will dedicate one such new development on Saturday. Students who have “aged out” of its educational program now can continue learning in a new, $6 million “adult life skills” building next door.
Another center for autism education, the Alpine Learning Group in Paramus, launched its adult services in 2004 and moved into a state-of-the-art facility in 2015.
“There’s a big need in New Jersey for education for adult learners” with autism, said Eric Rozenblat, co-director of the Institute in New Milford. The two-story life-skills building includes a large kitchen, where young adults learn how to make their own meals; a gym, with treadmills, an exercise bike and showers; offices with desks and computers; a laundry room, and a lounge with television, video games and magazines, to learn ways to spend leisure time.
The new facility at Institute for Educational Achievement for adults with autism in New Milford, NJ. (Photo: Georgiev, Marko, Marko Georgiev/NorthJersey.com)
On Thursday, two young adults were practicing job skills: Kate was typing at a computer, and Justin was polishing silver. The building has various rooms designed to simulate a home or workplace.
All of the program’s eight current participants have paying jobs. Employers include a catering company, an engineering firm, an insurance underwriter, a restaurant and an accounting firm. Job coaches accompany them, to help not only with the tasks but the social interactions of life at work.
Eventually, the Institute plans to enroll 30 adults, as they age out of its school next door, Rozenblat said.
New Jersey has the highest rate of diagnosis with autism spectrum disorders in the United States. One in 41 children in the state – including one in 26 boys – is diagnosed with the disorder by their 8th birthday, according to a 2016 report from the Centers for Disease Control and Prevention. That compares with one in 68 children nationally.
Autism is a lifelong disorder, with no cure. Some people with autism may be of normal intelligence but obsessively interested in certain subjects and lacking in social skills, while others may habitually try to hurt themselves. About half of those with autism have intellectual deficits.
Justin, an adult learner at the Institute for Educational Achievement, learns how to work with silverware for his job at a catering company. The new life-skills facility for adults with autism opened in New Milford, NJ. (Photo: Georgiev, Marko, Marko Georgiev/NorthJersey.com)
Although symptoms range from mild to severe, they generally include restricted, repetitive behavior and difficulty communicating and forming relationships. For many, early intervention and intensive treatment can be extremely effective in maximizing their potential for a full life.
Students at the Institute for Educational Achievement and other schools have made progress — through years of intensive one-on-one therapy using a technique called applied behavior analysis — in communication, social interaction, taking care of themselves and performing job-related tasks. But when that education stops, they risk relapsing and losing those gains.
The transition to adulthood is a critical time.
“They go from getting on the school bus five days a week, some with after-school programming and in-home support, to the next day having fewer services,” when their entitlement to education ends at age 21, said Suzanne Buchanan, executive director of Autism New Jersey, a nonprofit advocacy and policy group. “A lot of families describe it to us as falling off a services cliff.”
Although schools are legally mandated to develop a “transition plan” for students with disabilities, more than 60 percent of young adults on the autism spectrum nationally do not get jobs or continue their studies or training within the first two years of leaving high school, a 2015 report by the A.J. Drexel Autism Institute found.
In New Jersey, an “adults with autism task force” was established by law and issued a report and recommendations in 2009. Services are coordinated and funded through the Division of Developmental Disabilities of the state Department of Human Services.
For more information: Autism New Jersey will hold a conference on the transition to adulthood on Feb. 26 in Iselin. See autismnj.org for details.