Starbuck resident Gene Rossum took the 2018 movie title, “I Can Only Imagine,” and rephrased it as a question prompt:

Can you imagine what it would be like to be nonverbal and in other ways mentally delayed?

Can you imagine if you could not express your thoughts, emotions or feelings in a way that other people would understand?

Can you imagine not being able to tell someone that you are hungry, or that your teeth are hurting, that your mattress is uncomfortable, or that you soiled your clothes?

These are a few of the questions Rossum wrote to give perspective on what it may be like to live with an Autism Spectrum Disorder (ASD).

ASD includes four brain-based disorders that affect a person’s behavior, social abilities and communication skills. Those four disorders are autistic disorder, childhood disintegrative disorder, pervasive developmental disorder-not otherwise specified (PDD-NOS) and Asperger syndrome. They were merged into the umbrella of ASD in 2013.

Rossum is always on the lookout to increase people’s awareness and understanding of autism, and he has delved into research for around three decades. He also has a personal connection to these efforts, as he has both a child and grandchild with ASD.

His son lives alone, mostly independently, but his adult grandson J.J. lives next door to Rossum and his wife, Mary, in a connecting twin home.

Experiencing a day in the life

The Rossums started looking for caregivers last March before they moved to Starbuck because J.J.’s lease would be up at the end of October.

Even though they tried to line it up months in advance, the first caregiver didn’t show up to their home until late November, a month after J.J. moved in.

In the months since then, Rossum described the care availability as spotty. They’re still not up to full, 24-hour coverage. Some workers come for eight-hour shifts, others stretch for longer time periods. And occasionally, there’s no one at all.

COVID-19 safety guidelines were one of the reasons for the delay, as organizations were trying to hire and train new employees.

Rossum noted that another key reason is the pay rate. Since people can make more money flipping burgers at McDonalds than taking care of a vulnerable adult, they typically choose the first option for an entry-level job.

“It’s frustrating, but at the same time, we kind of understand some of the reasons for that,” Rossum said. “No one is going to take care of him like we do.”

Since J.J. is unable to communicate verbally, he wears wristbands with words he can point to, uses sign language for short phrases and types on a keyboarding device.

The wristbands have evolved over time from fabric pen to Velcro stick-ons to embossed plastic. He can point to the words yes, thank you, drink, bathroom, no, please and help.

Navigating the ‘service cliff’

One problem Rossum sees in the current services available for those with ASD is the emphasis on childhood intervention.

As J.J.’s official guardians, the Rossums noticed the plentiful services available for their grandson while he was in grade school.

“A big part of the focus seems to be on early intervention in children, no problem with that, but all those children become adults someday,” Rossum said. “You need to be aware of both sides of it.”

Once children with ASD exit the school systems , Rossum said options for their future dwindle. Students become graduates, dependent minors become independent individuals, and families face the decision of what comes next.

There used to be a day program location in Starbuck, but it closed because of COVID-19. Now, there aren’t any in Pope County. The closest options for J.J. are in Hoffman or Alexandria, but Rossum said those two have reached their capacity limits.

The Rossums aren’t alone in this challenge.

Eric Ringgenberg, education program director for the Autism Society of Minnesota, affirmed that there’s a nationwide drop-off of care opportunities after those with ASD age out of the education system. He calls this phenomenon a “service cliff” for individuals with ASD who are transitioning to adulthood.

“This issue is not restricted to rural communities; however, I do support the notion that resources are fewer and far between in rural communities,” Ringgenberg said.

Working around barriers

As the Rossums were reaching out and asking for caregivers, the primary reason they heard back for the lack of service opportunities was that they lived in an “outlying area” where care wasn’t provided.

“It’s like we’re being discriminated against because we live in a rural area,” Rossum said.

However, Riggenberg said lacking the proper resources and programs for aging adults with ASD may relate to more than geographic location.

Based on the feedback the Autistic Society of Minnesota receives surrounding accessibility to rural services, Riggenberg noted three primary issues have surfaced: lack of programs and resources, limited community understanding of ASD and cost barriers.

In response to these challenges, Riggenberg said the organization altered how it was offering educational materials.

“Providing virtual access to training programs was something we had started doing prior to COVID-19 to reach participants outside of the metro area,” Riggenberg said. “This continues to be a valuable way to reach a variety of audiences.”

Last year, the nonprofit also added sessions focused on the needs of aging adults with ASD and the lack of available services. In-person training and events have mostly been on hold because of the pandemic, but Riggenberg said staff members have also travelled to communities in greater Minnesota to collaborate with community partners and provide different programs and resources.

As for financial barriers, the Autistic Society of Minnesota offers scholarships and works with partners and foundations to minimize monetary costs when possible.

Figuring out how to proceed

The Rossums recently participated in an orientation with a social services organization because they still haven't been able to receive around-the-clock care for J.J.

But by continuing to increase the public’s knowledge and understanding of ASD, Rossum hopes more services can be provided in rural areas.

Moving forward, Rossum plans to continue encouraging care providers to reach out to communities that may not have access to services.

He wants to keep making efforts to form a support group for those connected to someone with ASD, but it’s proven to be difficult in the past.

“If you’ve seen one person with autism, you’ve seen one person with autism,” Rossum said. “That’s because everybody is different, and everybody has different issues and concerns.

And in the near future, Rossum hopes to see day programs for individuals with ASD become available in every county around the state.

“If we get enough people aware, then maybe we can get better services in outstate Minnesota,” Rossum said. “Maybe they need more money for transportation or this or that than they do in a metropolitan area. I don’t know that much about the financial aspects of doing it, but all we know is that the services aren’t here.”