When 26-year-old Ethan Kempner of Wilmington heads to work at Grotto Pizza in Middletown, he has two objectives: work hard and enjoy a slice or two.
Kempner was diagnosed with autism at age 2, and at 21 completed the specially tailored statewide Delaware Autism Program in the Christina School District.
Through Autism Delaware’s Productive Opportunities for Work and Recreation (POW&R), a community-based vocational nonprofit that launched in 2007, he has been successfully employed for several years.
Along with his paycheck for kitchen work, dishwashing and helping to keep the pizza shop spotless, Kempner is gaining much- needed social skills and camaraderie with the help of his full-time aide and other employees, and is proving that teens and adults with autism or other special needs can thrive at work.
When asked, Kempner—who is verbal but limited in his ability to communicate—says he is proud of his work, affirming that he likes the job and socializing with his co-workers. But the best part? “The pizza!” he says.
Why is all of this so important to local families and the greater community?
In a nutshell, it has to do with the dismal national employment statistics for adults with autism. A 2013 Drexel University study found that in the first eight years after high school, just 53 percent of young adults on the autism spectrum had ever worked for pay outside the home, and only 20 percent had been or were currently employed full time.
Another study from the United Nations in 2015 revealed an estimated 80 percent international unemployment rate for adults with autism after graduating from high school, as well as many years later. Many experts agree these statistics have not improved in recent years, due to the lack of job skills programs around the U.S. and presumptions of incompetence.
As a result, concerned parents and caregivers frequently share in support groups that they envision an uncertain future in which their loved ones “fall off the cliff” when it comes to employment, community involvement or available services, According to the Centers for Disease Control and Prevention (CDC), autism affects an estimated 1 in 54 children in the U.S. today.
Autism, or autism spectrum disorder, refers to a broad range of conditions characterized by challenges with social skills, speech and nonverbal communication; 31 percent of children with autism have an intellectual disability (IQ of 70 or below), 25 percent are in the borderline range (IQ 71 to 85) and 44 percent have IQ scores in the average to above-average range (IQ 85 or above).
What worries some parents and community advocates is that social isolation and lack of job opportunities will lead to difficulties with self-confidence and a life without goals or a sense of purpose, according to noted autism expert Temple Grandin, Ph.D., professor of animal science at Colorado State University. This concern over the future is what she often hears during her sold-out presentations about autism.
“A lot of these young people are graduating from high school without any productive work skills like those previously taught in car mechanics, cooking or sewing classes,” Grandin says. (An eponymous 2010 biopic starring Claire Danes tells Grandin’s story, focusing on how her acute sensitivity to animals helped her revolutionize industrial-farming practices; the film won five Emmys and a Golden Globe, among other awards.)“We need to stretch our children, just enough, outside of their comfort zone. If I did not have my work, I would not have my purpose in life.” Grandin, a high-achieving adult with autism who has written dozens of books about the topic, says it starts with giving children chores and volunteer jobs in churches or community centers, and continues with forming relationships in the neighborhoods.
“[Activities could include] dog walking, cooking for the church social or helping to set up a booth at a farmers market,” she explains. “It’s about learning how to work and adhere to a schedule at age 10 or 11, and enforcing a family work ethic and not allowing your child and his or her skills to be underestimated.”
The public’s perception of autism is often negative, but innovative vocational programs like Autism Delaware, willing employers and welcoming businesses are working together to change that by showcasing the abilities and talents of people with autism.
Kempner’s mother, Marcy—one of the founders of Autism Delaware with Ethan’s father, Artie—says the first goal was to create a vocational program. “We needed more than the school—we needed an opportunity to raise money and awareness, and to provide support for families,” she says. “I dedicated my life to building this organization.” Ethan previously volunteered transcribing books into Braille and doing spreadsheets for a nonprofit. Currently, he works at Grotto’s twice a week and does computer and office work at the DuPont Country Club once a week.
Marcy would like employers and the community to understand that hiring adults with special needs does not bring added headaches or burdens. In fact, it does just the opposite.
“This is not about taking a hit by employing people with disabilities,” she says. “These are the most reliable employees that you’ve ever had; they will show up, work hard and even do tasks that may seem mundane to other people. This is a positive message that needs to get out. There isn’t one person who has met my son whose life he hasn’t enriched and made better, including my own.”
Ethan’s employers echo the sentiment. Glenn Byrum, the director of human resources for Grotto’s 23 shops, remembers when they began employing adults through Autism Delaware’s programs, as well as through Easterseals—the country’s largest nonprofit healthcare organization committed to the needs of the 1 in 4 Americans living with a disability—nine years ago.
“Most importantly, we believe that everyone deserves a chance to work for our company, regardless of age, background, differences of opinion or societal status,” he says. “We want an environment where everyone feels at home and can flourish, including people with disabilities. Those adults who have come to us are thrilled to contribute to society and feel that sense of importance and pride. They end up doing an exemplary job for us.”
While many experts agree that employment training and finding work are among the biggest hurdles for this population nationally, Autism Delaware’s POW&R director Katina Demetriou says the First State is ahead of the curve, noting that some 75 percent of her program’s participants have secured jobs during the past 14 years.
“Our biggest challenge is that some businesses are not aware of the employment skills and talents that individuals with autism can bring to the workforce,” she says. “We have to look at what needs to be done so that the young adult is able to become an employee and productive citizen in their community.”
Demetriou says 14 is about the age when parents and caregivers should start looking for internships and job skills opportunities for their children with special needs. This is when the transition begins at school to looking at life after age 21, and determining how to incorporate these goals in an Individualized Education Plan (IEP) or 504 Plan, formal roadmaps developed for elementary and secondary schoolchildren who have a recognized disability to receive the support they need to ensure their academic success.
Overall, the state and its public education system work in collaboration with families to help this process, she says. “We are all looking at the future—who is going to do what to support this and to make sure the individual is a success.”
Demetriou adds that there is no “one size fits all” when it comes to employment. Therefore, person-centered planning is a critical part of what she does.
“We match the individual’s skills to the employment opportunity,” she says. “We know what they need to be successful, and we are constantly providing information and training to our community business partners. They may need a co-worker or a job coach at their side, or they may not.”
One key factor is that the adults she places “are not only meeting the expectations but they are exceeding them.” Abbie Mirabella, Ethan’s job coach and direct support professional from POW&R, has worked with him at both jobs and at home for the past two years, where she’s seen tremendous growth.
“I love seeing Ethan communicate with his co-workers and watching his level of independence increase,” she says, noting that these skills transfer to his home life.
“He is happier when we are working, because he values having something productive to do.”
In Delaware, there are employment opportunities for adults with autism in area hospitals; mom-and-pop shops; larger corporations, including Home Depot and T.J. Maxx; and brick-and- mortar businesses like Waggies by Maggie and Friends, a nonprofit, veterinarian- approved dog treat company in North Wilmington dedicated to employing people with intellectual disabilities.
Founders Mary Ann Nolan and Leigh Corrigan started the business for their daughters, Maggie and Elizabeth, in 2007 when the girls turned 21; Elizabeth has Down syndrome and Maggie is nonverbal but able to connect with others. As part of the commitment to the vision, five of their bakers have autism. The fact that so many young men and women with disabilities are unemployed continues to be the inspiration for growing the business.
“Our whole mission is to empower people with intellectual disabilities in our community, offer support, pay a minimum wage and keep it on a personal level,” Nolan says. “The difference between Waggies and other employers is that many of our people are still working here 12 years later. When Elizabeth, the youngest of my five children, was born, I became a staunch advocate for people with intellectual disabilities. I saw that Elizabeth and others like her need to be recognized for their talent, not their disability.”
For those who wonder what Ethan’s life—and those of his peers—would look like without paid employment, Marcy Kempner says, “Unfortunately, he would probably just be sitting at home without a lot of options. Even during the coronavirus pandemic, he has been doing great, thanks to the team that’s continuing to support his work. My son is happy with his life. What more would a loving parent want?”