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One day during Christmas break, Brendan Essig told his parents he had to tend the lettuce in the aeroponics greenhouse of Janus School’s post-secondary Transitions program.
Though it meant a late start to family vacation, Brendan went to the school, took care of the lettuce, and delivered it to a grocer.
Following through on a commitment “showed some growth,” said the 20-year-old’s dad, Timothy Essig of Lititz. “Brendan’s transitioning slowly into a world where there needs to be order, where there are actions and consequences.”
Children on the autism spectrum grow up to be adults on the autism spectrum. By 2030, an additional 37,000 adults are expected to need services in Pennsylvania. In this climate, every parent shares the same concerns. Will my son be happy? Will my daughter have a job she loves? Will my child live with me or find independence?
While parents ponder the options, state and local providers are gearing up for the coming wave.
The coming wave
“The challenges these young adults and kids face are quite often more difficult because they aren’t given the time and space and support from the people they encounter because their disabilities aren’t obvious,” says Janet Gillespie, head of school at the Janus School, Mount Joy (thejanusschool.org). “We need to offer something else for the kids not ready for the next step.”
Time is a crucial factor because, neurodevelopmentally, young brains are maturing later in life, says Janus School special projects director Staci Jasin. The Janus School’s Transitions program, for one or two years after high school graduation, provides supports that can be gradually eliminated as students expand their boundaries, she says. “We’re working to expose the students to different fields and different pathways. There’s more than one path.”
Guidance toward success helps prevent the “vicious cycle” in which a student might seem academically ready for college but hasn’t learned time management. “They fail a class,” Jasin says. “They fail three classes. Then they’re back at their parents’ house.”
Social isolation looms in those years, says Deborah Todd, clinical coordinator for Hanover-based Focus Behavioral Health. School days offer children with autism natural opportunities to practice socialization, but “once we get to adulthood, it is very easy to become isolated. It’s easy to get into a rut and sit in the basement playing video games all day.”
Nationwide today, one child in 59 has been identified with autism spectrum disorder, a rise from one in 150 in 2000, reports the CDC.
Addressing the whole person
Timothy Essig and his wife, Christine, know the “time and patience” it takes to see their eldest child reach his full potential. Brendan lives in the “eternal now,” retaining only those facts and lessons that feel relevant to him, Essig says. Maybe he can’t recall that two plus two equals four, but he can line up 50 model train cars “and tell you the name of every one of them without batting an eyelash.”
At a developmental level about nine years behind neurotypical, Brendan could stay home until he’s 30, but his dad recognizes “the undeniable fact that he will have to get out there in the real world. He cannot stay in school forever.”
The Pennsylvania Department of Human Services is striving for “autism competency” across counties and services, says Deputy Secretary for the Office of Developmental Programs Nancy Thaler. Under Governor Tom Wolf, her office pivoted from serving about 1,000 people with autism to opening the state’s $4 billion developmental support system, traditionally aligned with intellectual disabilities, to include those on the autism spectrum.
Everyone who registers with their county mental health and intellectual and developmental disabilities office “will get at least a support coordinator to help the family get information,” says Thaler. “We may not be able to deliver services to everybody at this point, but before, people with autism did not even have access to a support coordinator.”
A small number of adults with ASD qualify for the state Bureau of Autism Services’ Adult Community Autism Program (limited to Dauphin, Lancaster, Cumberland, and Chester counties) or the statewide Adult Autism Waiver. Both help adults with ASD participate in their communities as they choose.
“We have the unique ability to look at the whole person and have a strong team approach to everything that person needs in their life,” says Julie Rizzo, chief operating officer of Keystone Autism Services, the ACAP provider (keystonehumanservices.org/autism-services).
Whether through waivers or not, community programs partner with participants and families toward three primary goals—gaining employment, maintaining socialization, and building skills for daily living.
1. Employment: Customized employment starts with a “discovery phase,” says Anna Edling, director of residential services with Lancaster-based provider Excentia (ourexcentia.org). “It’s spending time with the individual, learning what they like and dislike.” The next phases focus on finding a job and providing supports when the participant is working.
One Excentia job coach linked a participant who loves searching the internet with a company saddled with unpaid bills. The participant, from her $31,000-a-year job, tracked down the scofflaws and reaped $1 million in revenue.
“It takes time finding the right employer, finding their needs, and having the employer buy in,” says Edling. “It’s about building collaborations.”
The Janus School Transitions program’s greenhouse supports a business, with students as management—taking orders, doing accounting, delivering products.
“This is about empowering them and showing that they can run a business,” says Jasin. “For some, feeling confident in a safe place opens the door to working in a scarier, less familiar place.”
2. Socialization: Some adults with ASD need help managing challenging behaviors, while others need guidance on managing the stress of going out into the community, says Rizzo.
Many programs work on building “natural supports” by reaching out to organizations of interest—perhaps a fire company or a baseball team—because “paid support people come and go,” says Edling. “Any time you can build a friendship is a good thing. It helps build a bridge.”
Volunteering provides socialization and teaches skills transferable to the workplace, says Todd. “Maybe in the school transition plan, there’s a lot of emphasis on getting a job, but when they graduate, there’s really no one to help them get a job. Be proactive about getting out in the community and have a sense of structure and a sense of routine.”
3. Life skills: Programs for adults with ASD help participants break down chores such as laundry, budgeting, and grocery shopping into small steps, building the capabilities that lead to independence.
“We have opportunities to really work on those skills they might need to be more successful on their own,” says Todd. “It’s participant driven. What do they need to work on?”
When a guardian has health issues or passes away, independent living can become a matter of necessity, not choice, says Karen Seymour, clinical director at Keystone Autism Services. Supports can range from 24/7 help to gradually transitioning into independence, she says.
While independent living is a common goal, parents should consider touring residential programs to see how the old “group homes” have transformed into actual homes, says Edling. “You take that care role out of it and become the person who can pick up your son or daughter and have a great day with them, knowing that their medications and their hygiene are taken care of by the staff.”
About one young adult with autism in four is socially isolated, and nearly one in three doesn’t participate in community activities, such as volunteering or attending classes.
“Everyday life”
At the state level, the Office of Developmental Services envisions an “everyday life” for all, says Thaler.
The goal is in the end“ that every single person achieves their full potential, lives the way they want to live, [is a] full participant in their community where they want to live, and is working and having relationships,” she says. “By making the community a welcoming place for people with disabilities, it becomes a better place for everybody.”
As for Brendan Essig, Timothy Essig hopes his son finds contentment.
“I hope he’s happy,” Essig says. “I hope that he finds something that will provide him with motivation. That will provide him with a certain self-awareness. That will provide him with practical skills, whether they be living skills, self-care skills, self-regulation skills, social skills, working skills. We all want to find something that makes us happy. That’s what we hope for him, too.”
Autism tips and supports
It’s never too soon for parents of children with autism spectrum disorder to think about adulthood, say the experts.
“Start asking those tough questions,” says Anna Edling, of Excentia. “The age of 12 sounds young, but 12 to 21 is only nine years. If you can start building those skills and hearing what’s out there and seeing what other parents have used, it helps to define what you want and the individual wants for their future.”
Get on waiting lists for services, because waiting until age 21 means the loss of crucial years as young adults struggle to hold jobs and stay in school, she adds.
Give children opportunities to test their independence and build skills. Even if it’s easier to do something themselves, parents should assign their children chores and “allow them to have natural consequences,” says Deborah Todd, of Focus Behavioral Health.
Julie Rizzo, of Keystone Autism Services, notes the importance of building natural supports from an early age, assuring a network of caring family and friends for a lifetime.
Finding support groups—and a wealth of other information—is as simple as visiting ASERT PA, Pennsylvania’s Autism Services, Education, Resources and Training online clearinghouse (paautism.org). Coordinated by the Pennsylvania Department of Human Services, the ASERT Collaborative convenes medical and research centers and providers to support and educate families and all Pennsylvanians on autism issues and services, all on a user-friendly web resource.