The Real Spectrum: You and your husband are strong advocates for autism, leading you to found the Frist Center for Autism and Innovation. What led you to take such a big initiative in autism advocacy?

 
Mrs. Jennifer Frist: We have a son who is on the autism spectrum. He is 21 now. He went through a great high school program and went to a local university program for individuals like him. When we began to look into the future, we saw there were very limited employment options for when he finished these programs. My husband and I started getting pretty interested in tackling the employment piece, since a lot was already being done with the clinical side for children and families. We really didn’t see much going on for adults on the spectrum and seeing how that was going to be our future, we got more into that employment space. I was introduced to a man from Denmark named Thorkil Sonne who had this worldwide vision and he wanted to bring to the states. I had helped start a UBS Roundtable event on autism and connecting families that were trying to do things in their own communities. I believed we should all be collaborating and learning from one another. During that whole process, I met Ernie Dianastasis of the Precisionists (a global company dedicated to employing people with disabilities). I recruited Ernie to help me open a facility here in Nashville. When Ernie and I would meet with other companies to employ people on the spectrum, we created this model that would help companies hire individuals with autism through us. Dr. Keivan Stassun won this huge grant and he created an idea of a center for employment purposes. It was pretty easy for me to get behind Keivan to get this center permanently on campus and as a leader of the higher education space.

What early onset made you think that something was going on with your son?

When he was very young, probably a year to 18 months, I knew he was not gaining language like he should. He could say a lot of words and could communicate but it was very different from other toddlers his age. For example, he couldn’t seem to understand “do you want to go eat lunch?” If he was hungry, he’d point to milk or point to food. He couldn’t reciprocate, “Yes, I’m hungry.” I kept going to the pediatrician and they kept telling me to give it some time and that he’ll gain vocabulary. And he did, I mean when he was age 3, he was writing the word caterpillar on the sidewalk with chalk. He was adding words, just not adding language. He would spin objects. There were definitely strong indicators that something was not developmentally appropriate.

At what age was your son formally diagnosed with autism?

He was formally diagnosed at two years old. As you know, it is very hard to get a diagnosis due to diagnostic criteria. There also are not enough diagnostic centers; it took me six months to get him into one of these centers.

How did you and your husband feel when your son was diagnosed with autism spectrum disorder?

It’s really tough; this was 19 years ago. It was very tough in that there was not a lot of information out there about autism; honestly, there was a lot of bad information out there. It was hard to navigate through what we should focus on and what strategies we should try. It really felt like we were racing against the clock to help our kid have a better way of life. It was very stressful, especially because I was pregnant at the time.

Has your son’s autism diagnosis affected your other children?

My middle child acts as if she’s the first child with a lot of responsibilities and maturity. She acted as a peer and social mentor for him when he was younger. She took that role very seriously. There’s not a lot of feedback with my son so it’s a little hard to have a close relationship with him but he definitely idolizes her. It’s hard being a younger sibling and not getting that feedback loop that you get with an older sibling since typically you learn from your older sibling. That feedback loop isn’t there. I’m sure there are times when she’s embarrassed. There have been times when she’s been at the softball field pitching and he’s stimming behind home plate. I think having open lines of communication is necessary but also it has been important to give her her own space too. She knows she doesn’t always have to include him in everything. He’s different than she is, but she embraces his weirdness. I have another daughter who is the youngest. She’s not as close with my son since she started high school when he was out of high school; I think it affects the sibling who is closest in age. She also had her older sister who handled it very well to model. She watched my older daughter navigate life with a sibling on the spectrum and modeled that.

What do you hope to see when thinking about the future of the center at Vanderbilt?

The ultimate goal was to make it easier for the 75-85% of people to find meaningful jobs that help them contribute to society in a way that they want to contribute. It’s a different way of thinking about employment. Overall, I think it is important to harness the skill sets of individuals on the spectrum to help them be productive members of society. There are numerous car washes down in Florida that employ no one but people with autism and the business sales are off the charts. Same thing in business services. There are some kids who only want to scan documents and code them. There are others who literally want to be debuggers for the greatest new video game. One of the main things that I think the Frist Center can really do is come up with better standardized testing to evaluate skill sets since a lot of times people with autism can’t communicate their talents and interests.