'We are having a moment': Autism Awareness Month shows progress made, challenges ahead
Resident Matthew Resnik goes on his tablet at First Place, residential housing in central Phoenix for people with autism, on April 17, 2021.
Brent Jackson was diagnosed with autism 30 years ago. In the years since, he's resigned from a job in Ohio after 17 years of working there because "they didn't understand autism."
He later learned about the Southwest Autism Research and Resource Center and First Place, residential housing in central Phoenix for people with autism, through his sister-in-law, a Phoenix resident. Though the 36-year-old was initially hesitant about a cross-country move, he applied, was accepted and began the move to the First Place Transition Academy in 2017.
Jackson said living at First Place was an "eye-opener" because he didn't have much prior experience with other people with autism. He saw for the first time the diverse array of abilities and challenges people with autism can have.
He didn't need assistance with things like chores or transportation, a common need among First Place residents, but he found budgeting lessons helpful and appreciated the 24/7 security services and convenient location near his job and church.
Jackson told The Arizona Republic he has loved Arizona since he was in middle school and revels in now calling the state home.
"I knew I would thrive out here, but I didn't know this well," he said.
He said it would be "awesome" for more people to have the kind of opportunities he's had and that awareness is the first step. Despite living in a noted "autism-friendly city," he said he's met many who haven't heard of resources like as SARRC, sometimes because they there diagnosed with autism later in life.
Even though he helps spread the word about Valley programs, he believes society generally needs to take autism awareness more seriously.
"I just think people need to stop judging those with autism," he said. "I think that's why people are so afraid of coming out of their shells and saying 'I have autism, this is who I am, I function this way because of this' ... I wish society would just accept people for who they are — I think that's the biggest issue."
"Autism is a part of who we are — it doesn't define us."
April is Autism Awareness Month. Among the causes for celebration are expansions of existing organizations to better support people like Jackson, a new medical clinic geared toward serving people with autism and a documentary heading to the Sedona film festival that hopes to ignite broader conversation.
'It's no longer a desert': Phoenix steps up its autism support, services
It's been five years since PBS Newshour declared Phoenix the "most autism-friendly city in the world," and the Valley has only continued to expand its resources since then.
"It's no longer a desert," Denise Resnik told The Arizona Republic Wednesday.
Resnik co-founded SARRC and is the founder of First Place. Her advocacy began when her son Matt was diagnosed with autism more than 25 years ago. Autism resources were scarce then and Resnik was told to plan on institutionalizing her son. Instead of doing so, she decided to create what didn't exist.
And now she's not the only one.
Resnik said she's "definitely feeling a boom" in resources and awareness due to a sense of urgency to meet demand created by increasing numbers of autism diagnoses.
The Centers for Disease Control and Prevention estimates that about one in 54 children has autism and about 2% of adults in the United States are autistic.
Resnik said she's seen various sectors "standing up in very significant ways" to improve accessibility and awareness of autism in the Valley in recent years, but there is still much work that needs to be done.
"While we are having a moment, it is also a building block for many more moments that we need to have in Phoenix," she said.
Expansion of autism resources in Valley
Earlier this month, the Southwest Autism Research and Resource Center announced it will open a new Scottsdale location this summer.
The new facility will be housed in the Paiute Community Center near 65th Street and Osborn Road and will mark SARRC's fourth location, with two existing facilities in Phoenix and one in Tempe.
The campus will initially offer two of SARRC's intervention programs, including its Applied Behavioral Analysis implementation program as well as the Community School, which the organization described as an "inclusive" preschool for children with and without autism between the ages of 18 months and 5 years.
SARRC President and CEO Daniel Openden said the Scottsdale location will be the first of 10 the organization hopes to have by 2030.
The community center is operated by the City of Scottsdale, which has been a SARRC partner for several years.
Openden said the campus's location in south Scottsdale was also appealing to the organization for its "fairly diverse area" that will allow them to reach a wide array of people who need support and services.
SARRC hasn't yet identified what cities it wants to expand to next, but Openden said it has identified general regions around the state it intends to target. Among those are the east and west Valley, which he said have "much fewer" autism service providers despite significant population growth in recent years.
"The real important thing we're going to do is help people see the hope associated with autism with appropriate, effective services for children, teens and adults to improve and have good outcomes with the support of the community," he said. "That can all happen here. We can really lead the way in Phoenix going from the most autism-friendly city to Arizona being the most autism-friendly state."
Expanding services, support to caretakers
Differently Abled Mothers Empowerment Society, or DAMES, started in 2018 as a way of supporting mothers caring for children with disabilities. The organization proves tools to help caregivers navigate available resources, as well as mutual support and activities including guided meditations and educational webinars.
It's a personal mission for DAMES founder Michele Knowlton-Thorne, who said she "felt so lost" after two of her children, 8-year-old Jackson and 5-year-old Maria, were diagnosed with autism.
"I felt like all this resiliency that I thought I had was gone, I didn't know how to operate the systems that I was now asked to operate," she said. "That depression was hard. Going from somebody who thought they could take on the entire world to feeling really lost about their direction, their future, their children's future, all those things come into play."
Knowlton-Thorne said she was suicidal for awhile, but was eventually able to pull herself through the difficult period and wanted to help other struggling parents and caregivers do the same.
"If you want to adequately care for the child, you also have to adequately care for the caregiver because if we are not doing well, we are probably not handling or treating our children well," she said.
Studies have found that children with disabilities are more likely to be abused than their peers. A study published by the National Library of Medicine found that children with disabilities are between three and four times more likely to be abused than their peers and are more likely to be "seriously injured or harmed" as a result of that abuse.
Knowlton-Thorne said DAMES' next set of programs are aimed to address the issue by helping parents cope with their children's problematic behaviors "so they can help their child in a manner that is constructive."
As part of supporting even more caregivers than the approximately 250 people who had a DAMES membership, Knowlton-Thorne said the organization recently became a charity instead of an LLC, meaning its resources will be made available for free to everyone.
Medical clinic opens at First Place to address healthcare barriers
A new medical clinic opened its doors in recent weeks at First Place in an effort to address barriers to care that many people with autism experience.
Dr. Caroline Kim Kupfer, First Place's primary care provider who also works for Dignity Health, said the clinic hoped to provide a "safe and stable and friendly environment" for people who may struggle with typical medical environments that don't necessarily cater to them.
There can be a lot of different offices, phone numbers, specialists and other information to keep track of that can feel "overwhelming" for autistic people, Kim Kupfer said. On top of that, some patients may rely on medical transportation, which can be unreliable and time-consuming to schedule.
"The barriers have definitely made it challenging for people to seek care and to have confidence in the care they receive," she said.
The clinic's goals are two-fold: helping people with autism navigate medical settings with ease at First Place and beyond, as well as training medical professionals on more effectively serving the autism community.
"Patients with autism certainly have medical challenges that ... the medical community is not necessarily so great at addressing so I think that we tend to not deliver care in as coordinated of a fashion as it is needed," she said, adding that she hopes to see similar models in "every city in the country."
The program will expand even further this July, when students at Creighton University's School of Medicine will begin month-long rotations at the facility.
"This is sort of the tip of the iceberg as far as dealing with health disparities," said Dr. Randy Richardson, the school's regional dean.
Richardson said autistic people "are discriminated against" medically and that he hopes this program will help change that while also potentially serving as a model by which medical professionals can reach other underserved populations, such as those experiencing homelessness.
Siblings Harry and Sara Goralnik, who both live at First Place, have already switched primary care physicians to receive care through the clinic. They have a patient advocate who helps them schedule and keep track of appointments, and Harry Goralnik also receives calls twice per day to remind him to take his medications.
It's those touches that make the siblings, who both have autism, feel at home at First Place. They moved in last fall, with 29-year-old Harry Goralnik telling The Republic part of his decision to move in was based on what he thought their late mother would think of the facility.
"My mom would think this place was perfect, so kind of to honor her that's part of what made me want to go here," he said.
Among the amenities Sara Goralnik, 32, enjoys at First Place are help with tasks such as cleaning and cooking, reminders about daily activities and events and a weekly 30-minute meeting with support staff for any additional assistance.
First Place also has a test kitchen, where Harry Goralnik gets assistance as he prepares his meals three times per week before taking them up to his apartment.
The siblings both said they appreciate the "understanding" First Place staff have of autism and the modifications they've put in place because of it.
"Both residents and the staff are probably the nicest, most patient, just best people I've ever met in the entire world," Sara Goralnik said.
Though they don't plan on living at First Place forever, the siblings said they feel it is preparing them to successfully live on their own someday. Sara added that her way of thinking has expanded thanks to the people she's met and skills she's gained at First Place.
"Everything is very black and white and they help us to see the grey areas of things as well as not pushing us too far outside of our comfort zone, while still helping us to become independent so eventually we can live on our own, which I think is a really good avenue for a lot of us," Sara Goralnik said.
Their biggest hope this Autism Awareness Month is that there will be more understanding from society at large of autism so that it's "not a big mystery to people."
"I think if people knew more about what it was they wouldn't be so scared of it," she said. "People are scared of it, they don't understand what it is, and I don't think that's really beneficial for anyone."
Filmmakers hope to go "straight to the heart" with new autism documentary
A new documentary about autism by journalists Caren Zucker and John Donvan will be premiering at the Sedona Film Festival this June.
A new documentary about autism by journalists Caren Zucker and John Donvan will be premiering at the Sedona Film Festival this June.
Zucker's 27-year-old son is autistic and currently lives at First Place in Phoenix. His story is what initially prompted the duo, who both worked at ABC News, to pursue disability journalism about 20 years ago.
"John and I started reporting on autism to try to make a difference in the world — not just for him, but for all people who are different," she said. "We've sort of been doing it ever since."
Donvan also has a brother-in-law with autism who lives in a similar facility in Israel.
They published their book, "In a Different Key: The Story of Autism," in 2016.
Though they had success with the book, which was a 2017 Pulitzer Prize finalist, Zucker said they found it had the most traction within the autism community. They hope a documentary, a format that Donvan said has the capacity to go "straight to the heart," will introduce the topic to people unfamiliar with autism.
"In order for people with autism to have a good life, they need to be accepted by the civilians and by society, and for society to realize they have a large role in making the lives of people with autism, and anybody who's different, richer," Zucker said.
The documentary chronicles the pair's search to find Donald Triplett, who in 1943 became the first person formally diagnosed with autism, and details the success he's had with living an independent and meaningful life in rural Mississippi.
"You don't have to know or care about autism to know or find that story dazzling, amazing, curious, heartwarming and kind of beautiful," Donvan said. "That's the beauty of doing this in film, is we can tell a story like that very effectively."
But while the film talks about Triplett's personal victories, it also focuses on challenges and barriers that affect others' ability to reach the same level of success. Zucker said there is much progress to be made when it comes to serving adults with autism, but is grateful that her son ended up in a place that has helped him thrive.
"There's very few pockets of excellence, and one of them is absolutely in Phoenix," she said.
Ultimately, Donovan said he hopes their documentary changes hearts and minds, creating a better, safer and more accepting world for people with autism.
"The smallest gesture, the smallest word, the smallest smile, the smallest move toward friendship can have a huge impact on the lives of people who are on the spectrum," he said.
The film won awards for best documentary at both the Oxford Film Festival and the Sonoma International Film Festival earlier this year.