Evan Shouse

On a chilly March morning, Evan Shouse joins his dad, John, for a stroll through a winding, paved trail at Aspen Grove Park in Franklin. Bright greens and light pinks are just peeking through for spring from the trees in this spot that they frequent not far from Evan’s apartment complex. One of Evan’s favorite things to do is walk at various parks in middle Tennessee with his family, along with swimming, horseback riding, and watching epic movies like Gladiator or the Lord of the Rings series. When he’s not doing one of those things, he and his family devote time to advocating for himself and other Tennesseans with Autism.

The Shouse family has been known to be fierce advocates in middle Tennessee since Evan was diagnosed with autism spectrum disorder at around 2.5 years old. Before then, Evan and his twin brother had begun learning and using language for communication. Their mom, Janet, said it was when Evan began losing that language that they decided to take them to the doctor for evaluations.

“[The evaluations ask] do they use a referential point and, you know, did they lead you by the hand if they want something they can't reach? Those kinds of things. And Evan didn't do that either. So, the (TEIS) folks came out and I think they knew immediately,” she recounted.

After speaking with a speech pathologist and a developmental psychologist, Evan was referred to and received Tennessee Early Intervention System (TEIS) services. From there, he entered the school system. His parents say that throughout his education, they worked with teachers and students to help them understand more about autistic individuals and remove barriers so that Evan could succeed alongside his peers. That included presenting and promoting inclusion in Evan’s classrooms, trying to make sure he had the right staff present and right amount of support, and advocating for changes within the schools that would improve safety and learning experiences. It wasn’t easy and there were a lot of bumps, but along the way they did secure some wins that would work for Evan and other kids that followed.

“When we moved to Hunters Bend, which was our neighborhood school, they have a huge playground that backs up to the Harpeth River. Evan loves water and we said, you know, maybe it needs to be fenced in,” Janet explained. “They're like, you're kidding, right? And we said, no, because who's going to fish him out of the river? So, they put up a fence. Within two weeks, he had climbed the fence. [School staff asked] what do we do now? And we said, laminate printed stop signs and post them around. He never climbed over the fence again.”

It was important to the Shouse family and Evan that he be in an integrated classroom setting and have every chance to voice his desires. His classmates came to know Evan well through the years and occasionally gave him a fist bump or a high five that he returned with a smile. Evan rarely communicates verbally but often expresses himself through facial expressions, direction, or actions. He can also circle choices written on paper or a whiteboard. His understanding of language, both written and spoken, is far greater than his ability (or desire) to express himself with words. As Evan got older, through his actions, he began expressing that he wasn’t completely happy with his living situation. His twin brother and older sister had moved out and on to college, while he was still living at home with his parents. In a person-centered planning meeting, support staff asked what Evan wanted for his future. His parents didn’t expect his response.

“One of the first questions they asked is, okay, where's Evan living in ten years? I'm like, with us,” Evan’s dad, John, said. “And they're like, no, mom, dad, this is not for you. This is for him. So, we gave him a choice. We wrote, you want to live on your own or with mom and dad? And he circled on my own.”

Evan has been living independently for more than 5 years now, with the assistance of direct support professionals 24 hours a day. Janet and John say it took several years to prepare themselves and Evan for this big step, to find the right space for him, and to ensure the right support was in place to keep everyone in their family safe and happy. Though it was tough to reach this point, they believe he’s happier now. He’ll visit with them on Sunday afternoons and then when they ask if he wants to stay or go, he’s usually ready to get back to his own home. They believe it’s the dedicated DSPs that have made the transition a success.

When we asked Evan what he thinks is most important to make sure he and other people with disabilities have a good life, he responded by marking choices such as “having a place to live, having jobs we like, getting to do fun things in the community, and making sure we have good helpers like Quan.” Quan is a Direct Support Professional that has provided stability and continuity for Evan. He often joins Evan for his walks.

The Shouse family continues to advocate for people with autism and disabilities on topics like affordable housing, inclusive and integrated employment, and more. They stay connected with the Tennessee disability community and spread the word about available supports and services. They do so through Evan’s sit-downs with lawmakers, Janet’s work with the Vanderbilt Kennedy Center and her Tennessee Works “Rise to Work” blog, John’s work with the Arc Tennessee and the Autism Society, and Emma, Evan’s sister, leading the Tennessee Adult Brothers and Sisters (TABS) and working at the TN Council on Developmental Disabilities.

“I guess one of the things I would say to parents is don't shy away,” Janet said. “If you suspect your child has autism, get an evaluation. If [someone] says nothing's wrong, forge ahead, because not getting a diagnosis doesn't help anybody. It only hurts your child in the long run.”

John encourages others to find support in community. He says that’s helped him and Janet the most as they were raising their three children. “When Evan was diagnosed, the doctor told us to draw close to other families. Because you'll get more strength and encouragement and learn more from other folks who've tried this path ahead of you than you'll ever get from health care professionals,” he said. And that’s exactly what they did. The Shouse family reached out to the Autism Society of Middle Tennessee, now called Autism Tennessee.

“We found a community of people who were showing up, who had kids in that same age range. And many of those people that we met, like right out of the chute, are still some of our dearest friends now. So, she was absolutely right. Drawing close to the community was pivotal.”