For Niya Stephenson, what could have passed for adolescent angst was really much more.
“I was getting pretty isolated. I was feeling pretty socially awkward,” she remembers. “My mom was worried I might not be able to face the world.”
In her senior year at Desert Vista High School, Niya was diagnosed as having Asperger’s syndrome, a form of autism in people whose IQs are usually in the normal to superior range. Often, as in Niya’s case, it makes social interaction difficult. Those who have it tend to be drawn to repetitive behaviors.
As you might guess, a teenager with undiagnosed Asperger’s would struggle, and Niya did.
“We noticed that she was isolated,” says Niya’s mother, Denise Stephenson, of Phoenix. “She wasn’t interacting with friends.”
There were other cues. “She was making hundreds and hundreds of these [origami-like art-project] spinners, and no two were alike,” Denise says. “She has boxes and boxes of those. She was just making them one after another after another. She needed that visual stimulation.”
Niya says playing cello in the high-school orchestra helped her through her teenage years. But she did struggle to manage her emotions.
“Something that could be very common to us could be very emotionally upsetting to her,” Denise remembers. “It could be something (minor) like someone moved her pencil, and it (became) a real drastic emotional shutdown or blast.”
When the meltdowns surfaced, Denise says, “That’s when we decided, OK, we need to get therapy and find out what’s going on. Within about two or three sessions, Misty (a high-school counselor) said, ‘You know what, I think we need to check this out; I think you need to go and get a diagnosis.’”
For Denise, the Asperger’s diagnosis came as a relief. It affirmed suspicions that had long been on her radar and gave Niya’s behavior a context her family could understand.
“I saw signs many, many years back, actually from (when Niya was) a toddler. We noticed she wasn’t speaking at about 2 years old. She wasn’t using words, and we got really concerned about that, because we thought it was hearing related.”
The family, then living in Canada, was told Niya would need help with speech and development. The Stephensons moved to the Valley when Niya was 5. During grade school and through most of high school, her behaviors were addressed through speech therapy and special-education classes. She did have an Individualized Education Plan for learning and speech delays.
The Asperger’s diagnosis opened up a whole new world for Niya. As she participated in programs through Southwest Autism Research & Resource Center (SARRC) in Phoenix, her confidence grew and her social skills improved.
Niya credits SARRC’s Peer to Peer program for helping her understand social cues and giving her tools to navigate difficult social situations: “how to handle bullies, how to have a get-together and stuff, what it takes to be a good friend, how to deal with teasing.”
SARRC’s Women’s Empowerment classes built on those skills.
“The coolest thing about this program was it was focused on young women transitioning to adulthood,” Denise says. “They taught them things like finances — how to balance their bank accounts, how to look for an apartment, how to fill out a lease, how to live independently, how to do a job search, how to set up a resume — so everything that had to do with creating independence for them was the real core of that program, and it was amazing.”
Eventually, Niya found her way to SARRC’s Summer Tech Camp. The one-week program at the University of Advancing Technology campus in Tempe gives young people with a degree of autism a chance to experience college life for a week and even live in a dorm with their peers.
“Participants have the opportunity to select either a video-game-design track or a digital-video track,” says Brad Herron-Valenzuela, a program coordinator for the camp.
Niya says she understands herself better now that she’s been around others with Asperger’s.
“I find this very interesting: many of my peers, at SARRC and even at UAT, in one way or another … we are very talented at one thing,” she says. “Whether it be artwork or technology and computers or gaming. Somewhere within that area, we are really good at one thing.”
Herron-Valenzuela stresses the importance of a getting a correct diagnosis, even if it comes late in life, because it can make available resources that might otherwise be difficult to access.
“Getting the diagnosis can open the opportunities — state services, even the federal (ones) like Social Security Income — and then, additionally … it allowed (Niya) to access services from SARRC and potentially other agencies that could help her.”
Both Denise Stephenson and Herron-Valenzuela agree that early diagnosis is best, but they make another point about the importance of continuing to support young adults who fall anywhere along the autism spectrum.
“Autism is a neurological difference. You don’t really outgrow it,” Herron-Valenzuela says. “While you can remediate some of the challenges, we need to continue to focus on all of these things, all of the life skills, all of the social skills they need to progress throughout life.”
For Niya, now 20, the classes, the attention and the understanding have been life-changing. She wants parents and children in similar situations to try to find the help she’s received, and she wants those who feel the isolation she once felt to know this: “You are not alone.”
Today, Niya is a student at East Valley Institute of Technology and Mesa Community College and works as a Starbucks barista. Not only has she found her confidence, she’s also full of aspirations and plans.
“My goal is to be an animator, and to just get to my career. Find my moxie!” she says.
More information: The nonprofit Southwest Autism Research & Resource Center in Phoenix provides an extensive array of services to individuals with autism — from early intervention for families of toddlers through employment services for adults. Learn more by calling 602-340-8717 or autismcenter.org.