By age 21, young adults are usually finishing up college degrees, eyeing potential careers or generally finding their places in the world.
It’s a coming-of-age moment for parents as well, but for those with children who have been diagnosed with autism, the adjustment can be incredibly difficult.
“From four years of age through 21, you’re going to school every day. You have a fairly comfortable routine, something you’re accustomed to. Then all the sudden it stops,” Frank Kuepper, co-founder of the Southampton-based Autism Cares Foundation, said. “At age 21, you fall off the cliff.”
People with autism often face this uncertainty as they enter young adulthood. At that age, services, programs and activities for people with autism become more scarce.
They may be more housebound, no longer present in their communities. A lot of what they learned, the skills they gained, could regress, and unemployment is common.
“It is extremely dire,” Beth Garrison of the Autism Cares Foundation said. “There’s a lack of services out there for the needs of the families … The amount of individuals with special needs is growing every single year and as that grows, the money is running out.”
Garrison was recently hired as the CEO of the Adult Services Division, a new portion of the foundation’s services that is dedicated to people who are over the age of 21.
This program grew from Frank and Linda Kuepper’s concerns about their own son, Michael, who was diagnosed with autism at a young age, and is now approaching adulthood. In founding the Autism Cares Foundation about a decade ago, they gave children and teens with autism and their families opportunities to participate in group outings, clubs and more. There are also activities almost daily at the foundation’s resource center in Southampton.
Now, they want to continue these things, and expand services to a wider age range.
“As a parent … we’re not going to be there at a certain point,” Linda Kuepper said. “We’re going to be gone, so what’s going to happen?”
The new program begins on July 11 and will be held on weekdays from 9 a.m. to 3 p.m. Participants will continue lessons in daily living, socialization, communication and what Garrison called “pre-pre-vocational” skills.
This could mean learning anything from following directions and schedules to staying on task. It’s a step below job training, but it could give them the foundation to get there.
“Ultimately, the goal is that the individuals we work with can transition into employment or supported employment activities,” Garrison said. “It’s structured, but it’s also fun.”
Garrison aims to make the program age-appropriate by including adult-oriented activities. She spoke about the possibilities of volunteer work, exercise, passion projects, even having coffee hour. She also noted the importance of self-directed learning.
Frank Kuepper describes it as “a different kind of school,” where participants will be taught life skills that they will be able to build upon. The end goal is to help adults with autism be as independent as possible.
“Many of them will be able to learn jobs and hold jobs, although they may work at it differently,” he said. “They may work three to four hours a day and that’s their tolerance level. If that’s the case, that’s what we’ll work towards so that they have a purpose to get out of the house, go to a place, create, develop job skills and contribute back to their communities.”
For the Kueppers, this is part of their plan to help the foundation grow. Eventually, they envision a large community similar to senior living facilities that would provide long-term care, job skills training, recreation opportunities, on-site resources and more.
“People need to be given choices as they age,” Frank Kuepper said. “It’s very exciting to see the foundation grow in this direction.”
The Autism Cares Foundation Resource Center is located at 816 Second Street Pike in Southampton. For information or to inquire about the adult services division, call 215.942.2273 or visit http://www.autismcaresfoundation.org.