MUSC's Autism News Network prepares for movie debut

Young adults who work and appear on the Autism News Network at the Medical University of South Carolina are excited about the upcoming premiere of the first movie they’ve made. It debuts Thursday, April 25 at 6:30 p.m. in the auditorium of MUSC’s Institute of Psychiatry.

And if a recent interview conducted by two ANN veterans that will appear in the movie is any indication, the film should be fascinating.

Nate Saylors, nicknamed Sub Zero, and Scott Biehl, aka The Godfather, sat down with Melvin Brown, M.D., a member of the MUSC Board of Trustees and a concierge medicine specialist, for a conversation that showed the impact of autism on a range of families’ lives. Both interviewers are on the autism spectrum. And Brown has a close family member who is as well.

Biehl conducted the first half of the interview, asking Brown how many of his patients have autism. “The quick answer to your question is not many. But I want to add to that – not many that know,” Brown said.

“Ah, OK. There’s still so many who have no idea,” Biehl responded.

 

“Exactly. I like the concept of spectrum versus specific diagnosis because there are so many people that have symptoms that could be said to be on the spectrum. Like different ways of processing or different ways of communicating that could be on the spectrum,” the doctor told him.

Those ways of processing and communicating sometimes help people in their professions, turning fascinations with subjects, such as finances and medicine, into productive careers.

The adults with autism who work on the Autism News Network understand that kind of focus. They’re “passionate about creating media content and showing the world what individuals with autism can do,” according to the network’s website. The team of 10 content creators work under the direction of autism specialists, including Frampton Gwynette, M.D., who provide support and coaching for participants.

Saylors tackled part two of the interview with Brown, asking: “So where do you get your heart for autism?”

Brown answered. “Well, my son has autism. Yeah. I have a 29-year-old son. His name is Gabriel. And he has autism, and he was diagnosed when he was 15 years old. Pretty late for an autism diagnosis, right? I think the first diagnosis he had was pervasive developmental disorder.”

“I’ve heard of PDD. I remember having to research that for my senior project,” said Saylors. 

“It was like a big catchall term. Doesn’t sound very good, does it?” Brown said.

“I’m looking at this kid who’s happy, jumping around, having a great time. I was in the Navy, and we were stationed in Japan. And I tell you that, because it was a very small community, he was able to sit down with a therapist for long sessions several times. The therapist said Gabriel’s on the spectrum. We figured out a good training program for him, and his whole world opened up. So that’s where my heart for autism comes from,” Brown said.

 

He later encouraged the Autism News Network reporters to go before the Board of Trustees to tell them about their work. “Interviewing people, getting the word out is so important,” he said.

“My biggest challenge having a son with autism is helping him find his tribe. You know?” Brown asked Saylors.

“So, yeah. That collective ‘people’ where he knows he fits in, and he knows he can trust,” Saylors answered.

“These people. Yes,yes. That's been a challenge. Some cities are better than others, you know? I feel that particularly Project Rex is a huge step in the right direction for our city, but a lot of the focus of autism groups is on children, you know? Yeah. What about the grownups?” Brown said.

Project Rex, also at MUSC, is for children ages 6 and up with social communication deficits. It serves kids with Level 1 autism, ADHD, social anxiety and also children struggling socially who may not have a specific diagnosis.

But as Brown and Saylor noted, autism doesn’t disappear when people grow up. 

“Luckily, I have the resources to help my son buy a condo close to us so I can check on him, and he can live independently, but a lot of people don’t have those resources,” Brown said.

“I lived in a city once where there were residence homes for people on the spectrum with kind of like a residency coordinator living there. Okay. Cities have that. We need some programs like that. Not just MUSC exposure but City of Charleston, South Carolina Assembly, that’s what we need,” Brown said.

Saylor nodded. “Yeah. And arguably, in my opinion, the biggest resource for somebody with autism is just someone that generally, genuinely cares. Like you for your son.”

“Yes. Yes,” Brown agreed.

“Or my father for me,” Saylor said.

“Yes. You wanted to be light, but I had to be a little serious. My biggest concern for my son, what hurts my heart is he’s very lonely,” Brown said.

“Yeah. I don’t know if this is like a lot of other people with autism, but, personally for me, isolation is a major, major thing,” Saylor said.

He can make friends, he said. But isolation is still an issue.

Thanks to the Autism News Network, it’s less of an issue at times. The group meets regularly to collaborate, create and edit videos. Some are interviews like the one with Brown. Others focus on jokes and lighter subjects. But all are expressions of the network’s participants. 

They’ll be on display April 25 in a movie described as “Embracing uniqueness. One spectrum at a time.” The movie is open to the public. You can get free tickets here and see a film that shows the people and personalities – most with fun nicknames – behind a network and a condition that affects an estimated one in 36 children.