This guest blog is the third in a series from my friend and colleague Dan E. Burns. Dan asks the tough questions to find answers related to young adults living with autism. Dan’s last guest post Touch, See, Feel, Move explored The Brookwood Community, the brain in relation to movement and exercise. In today's post, Dan interviews one of the founders of nonPareil Institute in Plano, Texas, to learn how the Institute his helping adults with autism find job success.
The Pinocchio Syndrome: nonPareil Institute and Jobs for Adults with Autism
by Dan E. Burns
Months before he graduated high school, Ben carried around his picture book, Jobs People Do, as if a diploma would transform him into a scuba diver, waiter, photographer, or nurse. “I believe,” his eyes said as he waited, capped and gowned, to cross the stage. Ben is pre-verbal and severely impaired. Like Geppetto, Pinocchio’s father, I awaited his transformation from a wooden puppet to a real boy with worth, autonomy, and a future. And as Ben’s hand touched the scroll, I understood the father of the stricken child who cried out with tears, “Lord, I believe; help thou mine unbelief.”
It didn’t happen that night for Ben. After an unsuccessful interview with Texas Department of Assistive and Rehabilitative Services (DARS), he tore up his Jobs book. Today he’s stuck in dayhab. It seems to me that his eyes still ask, “Please unlock the door. Please open the future.”
Gary Moore thinks he has the key. Gary is co-founder of nonPareil Institute, which provides technical training and jobs to Dallas-area students who have been diagnosed with autism.
I visited nonPareil on the Southern Methodist University campus in Plano. It was in one of countless honeycomb structures strung together like memory chips on a circuit board. Gary had stepped away from his desk; and as I waited, I noticed a stack of applications fanned out like a hand of cards. Each of these neatly signed papers represents a son or daughter, a parent’s aspirations, a young person’s vision and hope and the future we want for our children.
Gary bounded in, full of energy. I followed him down the hall past the 60-cycle hum of the 3D animation tools, digital sound applications and sparkling new equipment in the training and production labs. We passed through a sliding glass door into a cool, darkened room, one wall a mosaic of flat video panels, displaying images that kaleidoscoped at the gestured commands of the staff and students. I sensed a current coursing through the room: Humans were invisibly connected to these ministers of sand and silicon through an electromagnetic field. We are creating something novel and important here, the field said. The Force is with us.
I asked Gary: “What motivated you to do the work you’re doing?”
“His name is Andrew,” said Gary. “He’s my son, 16 years old, in the middle of the autism spectrum. When it comes to computers and video games, he’s smart. But like so many ASD kids, he needs help navigating the real world.”
“How can nonPareil help him do that?” I asked.
“Plans are to expand the Institute to include a residential campus so my son will have a place to work and to live, to be loved and accepted, to be among peers where he’ll be safe, after my wife and I are gone.”
“So you’re looking at residential alternatives as well as work,” I said. “Why start with the work?”
“I’ve met over 350 families who have adult children affected with ASD,” said Gary. “The question is always, how are they going to sustain themselves? Ninety percent of adults with ASD are unemployed or under employed, and it’s not because of their lack of abilities.”
“As an example,” he continued, “our student instructor is on the spectrum. Until we trained her and hired her, she was a school crossing guard and throwing newspapers. Now she’s heading a team that creates and sells apps on iTunes. The point is that these kids and young adults with ASD are gifted. Many have the ability to do professional level work and potentially earn a much higher income than they would as a janitor or shelf stocker. But most employers can’t see past the autism. They haven’t figured out how to identify and take advantage of their gifts. Part of our mission at nonPareil is to educate employers, DARS, and the community at large on how to best work with these gifted individuals.”
The kids around me were eager and engaged, but were they working or playing?
“Both,” said Gary. “We take their passion for video games, animation, and computers and assist them with learning the skills necessary to actually build these technologies. In training and lab, they see their peers sharpening their skills, creating 3D game maps, models, digital artwork and other digital media. So they begin to focus on the task. Given recognition for their work, they progress. They’re invited to participate on projects with other crewmembers, creating games and apps for mobile devices. As they complete work on a project, they ask their crewmates to playtest their app, and the interaction between project members and students turns work back into play.”
As we were walking past the work stations, an aide introduced me to one of the students, a blond, handsome, mop-haired teen sitting at a computer. Think of young Larry Mullen of the U2 band. “Hi,” I said, extending my hand. He looked up briefly, froze and looked away from me, expressionless, mumbled something, then returned to his computer, fingers flying, images dancing, a denizen of the digital world.
I remembered Ben’s interview, which was abruptly terminated because he was assumed to be “uncooperative.” But he was just baffled, asked to do a task he didn’t understand. How did these kids get past the DARS interviewer – a major hurdle for many ASD folks? I talked to Jim Hanophy, Assistant Commissioner for Rehabilitation Services for DARS, about the changes taking place as his agency adapts to the wave of ASD adults graduating from high school and looking for jobs. Jim said, “The historical VR model was built upon the notion of returning a person to a functional level: WWI veterans coming back without arms or legs. For many of our ASD clients, that’s a bankrupt model. It doesn’t drive innovation. The new model, which we are implementing in Texas, recognizes that disability doesn’t reside within a person. Disability resides only in the fit between a person’s capabilities and the demands of the context in which that person functions. In other words, the challenge is not to fit the person to the job. The challenge is to fit the job to the person.”
At nonPareil, the jobs appeared to fit the people. But all the students that I saw were at the middle or high end of the spectrum. I asked Gary, “Can lower-functioning young adults like my son Ben succeed in a high-tech context, like nonPareil? “
“We’re still fairly new and must deal with limited space, staff and resources,” he said. “Our ability to adequately service the full spectrum is constrained. But we recognize that even those who are more severely impacted have hidden talents and abilities waiting to be tapped. As we continue to grow and develop our campus, the range of students we accept and the types of services and programming we offer will expand as well. We will create many more jobs, including those outside of technology. Our example will help to reverse the 90% unemployment rate for those with ASD. There is much work to be done both inside and outside the autism community to bring our teens and adults hidden talents to life.”
Jim Hanophy, who is helping Gary bring his dream to life, concurs. “We see the role of VR as being the conduit between the consumer and the business to help the consumer develop skills and abilities based on interest. And, perhaps more importantly, to help the business adapt or adjust the work environment so that the worker is successful and the business has its needs met.”
I thought of Ben, the squandered years, the shredded copy of Jobs People Do. “What can parents of teens with ASD do to prepare their children for employment?” I asked.
“Work closely with the school,” said Gary. “Spend time with the transition coordinator, and make sure that your son or daughter is exposed to as many different types of work experiences as possible. Keep an open mind. Don’t let the school assume your child is going to a workshop, dayhab, or college. Discover their passion, be it computers, video games, music, art, or cooking, then focus on those organizations that provide services or programs that fit. Take your sons and daughters out to meet with potential employers. If they have an interest in technology, want to work, can stay on task with some assistance and communicate with the staff, bring them here and let them see what we do.”
The good news: after my tour of nonPareil, DARS agreed to grant Ben another interview using their revised VR model. I’m grateful for that. And I think, also with gratitude, of the words of Barbara Brown Taylor: “Salvation happens every time someone with a key uses it to open a door he could lock instead.”
I’d be lost here in these identical buildings, distinguished only by the numbers; and so, I think, would Ben. But I recall the stack of applications on Gary’s desk. And I know that somewhere in these endless halls, more than one wooden puppet is becoming a real person.
Parents, young adults, and students with ASD can visit nonPareil’s website and experience Gary’s campus vision at http://www.npitx.org/.
Dan E. Burns, Ph.D., is the father of a 24-year-old son on the autism spectrum and the author of Saving Ben: A Father’s Story of Autism. Dr. Burns is Adult Issues Liaison for AutismOne. He chairs The Autism Trust USA, a 501(c)3 charity focused on empowering parents to organize communities where their ASD children and others can live and work, enjoy life, continue to heal, and give back to society.