Here for the Journey

Looking back on 25 years, SARRC has evolved into one of Arizona’s leading autism organizations offering a lifetime of support.

Years before Katie Smith was pregnant with her first child, her father happened into a tour of the Southwest Autism Research & Resource Center’s (SARRC) Phoenix campus and came home inspired by the amazing resources and services this nonprofit in their own hometown provided for those with autism. Neither he, nor Katie, realized at the time what an important role that tour would play in their lives and that of Katie’s firstborn, Noah. 

“By about 12 months old, Noah was starting to show many signs [of autism], and my dad suggested this place — SARRC,” Katie recalls. “We got Noah evaluated and were able to get into JumpStart, which was great in guiding me as a parent on how to help him even before he started therapy.”

Though Noah’s official diagnosis came just as the world was impacted by the pandemic, he was still able to enroll in the Community School via an at-home option. A few months later, he transferred to in-person, and began to thrive. 

“Noah at this point, a year and a half later, is only a few months behind in expressive language. He went from 3 months to almost 3 years old,” Katie says. “I bawled my eyes out when he said ‘mama’ for the first time.”

EVERY STEP OF THE WAY

When SARRC was founded 25 years ago, it was born from a collaboration between mothers and a medical professional wanting to provide a resource for newly diagnosed families hungry for some place to turn for answers and information. Since its inception, it has grown to meet the needs of the population it serves — from pre-diagnosis to adulthood and every stage in between. 

In many ways, the blueprint for SARRC has always been an evolving highway. 

“Early on, when I first got to SARRC, Denise Resnik [founder] envisioned SARRC as this place that had ‘on ramps’ and ‘off ramps’ at various points of life,” says SARRC President and CEO Dr. Daniel Openden. “Maybe you get off when you start school, and you access other services. Then maybe you get back on to help as a teenager with some of those social challenges.”

For 14-year-old Sergio Joel Orbegoso-Rivera, those on and off ramps have made a huge impact. When he was diagnosed at 2 years old, his parents weren’t sure where to start, so his mother Glenda just got in her car and drove to SARRC. 

“We got him enrolled in the Community School, and the difference was immediate,” she recalls. And those strides continued, both as Sergio started school in a typical classroom and as he came back to SARRC to learn important social and friend-making skills through the PEERS® program.

“I cannot believe where he’s at right now,” Glenda says. “If you told me he was going to be like this when he was first diagnosed. I would not have believed you. He’s a 14-year-old who act like he’s 19 in maturity. He’s responsible for and caring of others. He expects nothing for free. He works for everything. He’s a straight-A student and was just selected as Leader of the Quarter unanimously by all of his teachers.” 

Glenda says that though her son still needs to practice communicating and building relationships with teens his own age, it isn’t something he fears, but rather a goal he’s set for himself. And thanks to the support he can count on from SARRC, it’s a goal his parent know he’ll achieve. 

“They are there with you the whole time,” she says. “SARRC helped us in the beginning, and they keep helping us. I can’t thank them enough for growing with us.”

BUILT INTO THE MISSION

Over the years, that growth has become synonymous with SARRC’s mission, solidified in the agency’s statement to “advance research and provide a lifetime of support for individuals with autism and their families.”

“The biggest thing for us is always going to be the development of highly individualized services,” Openden says. “We like to say that if you’ve met one person with autism, you’ve met one person with autism. To think a single program will meet the needs of all people with autism, that’s a fool’s errand. Instead, we must look at the gaps that might be out there and focus on the lifespan.”

Openden points to SARRC’s successes in both directions, from earlier diagnosis all the way to programs that teach individuals how to live on their own and help create inclusive communities that will generate more opportunities for adults on the autism spectrum. 

At 33, Kelsey Follett is the perfect example of the many contributions adults with autism provide to society. When she moved to the Valley from Indiana a little over five years ago, she was attracted to the idea of living in a bigger city with more opportunities to work and make friends. After learning job interview skills, resume building and more from SARRC’s Employment Services program, she was able to secure a job as a courtesy clerk with AJ’s Fine Foods. She says SARRC’s guidance is what gave her the confidence she needed. 

“I learned by going through practice interviews and getting help with what to say,” Kelsey says. “I learned how to believe in myself.”

THE ROAD TO INDEPENDENCE

In 2019, Kelsey graduated from the First Place® Transition Academy, operated by SARRC, a structured two-year program located in the supportive environment of First Place – Phoenix that helps build crucial skills to support self-sufficiency. She is now living on her own in an apartment at 29 Palms, an inclusive community designed for seniors and adults with autism. 

She often gives tours of her apartment to others interested in following the same path, and splits time between her job and her volunteer work at the Arizona Animal Welfare League. She’s also built a community of friends, many of whom she helps with dog walking. 

“I love my apartment,” she says. “I wanted to learn to live on my own and be independent. I learned how to have confidence, and that I can turn to my friends and neighbors for support.” 

For her mom, Cindy, the support has meant a sense of peace that allows her to feel pride for all Kelsey has accomplished. 

“Everything from diagnosis through every step of life, you need to have those safety nets,” Cindy says. “Even to this day, I know I could text someone at SARRC and get help. That’s an amazing thing.”

That support is growing as SARRC celebrates 25 years and looks to 26 and beyond. One of the biggest steps for the organization is a newly created Self-Advocate Advisory Board made up of young adults and adults on the autism spectrum with a variety of backgrounds. The board’s purpose is to advise on all SARRC’s programs and future opportunities, which Openden says is a vital ingredient in how SARRC navigates the autism journey for all ages. 

“None of this happens without those on the spectrum themselves,” he says. “They are our key stakeholder group.”

“The impact of all this is really SARRC’s vision,” he adds. “People with autism meaningfully integrated into our inclusive communities. There’s no fluff in our statement. Every word has meaning. We want the people we serve to have the same social opportunities, the same educational opportunities, the same employment opportunities as anyone. Our focus is about building supportive communities for people to integrate into, from diagnosis through adulthood.”

By Ginger Scott Eiden

SARRC provides support through children’s services, teen and adult services, diagnostic services, family and community services, and ongoing research studies. Learn more »