From a father’s journey to a national conference
A television broadcaster whose son has autism and a Carolina autism researcher have teamed up to create the first UNC Autism Fathers Conference. Set for Sept. 14, the conference is designed for fathers of children with autism spectrum disorder, but other parents are welcome to attend.
The conference is a collaboration between television broadcaster Dwayne Ballen and Dr. Joe Piven, professor of psychiatry and pediatrics and the director of the Carolina Institute for Developmental Disabilities. Both men wanted this conference to address the challenges a father faces raising a child with autism spectrum disorder and to let these fathers know they are not alone.
The conference offers a keynote speech by former NASCAR star and father of a person with autism Ray Evernham, panel discussions with former NFL Player Alex Smith and film screenings that will have discussion groups led by experts in the fields, including autism research and family psychology.
Piven works with many families who have children with ASD, and he’s found that when he reaches out to families to help with research, often the fathers are less engaged.
Fathers often seem to have different expectations for their children, especially sons, Piven said. “Your son’s going to be an athlete. And when that doesn’t turn out to be a possibility, they have to readjust.”
Little research on fathers
Part of the problem is that there is little to no research on fathers of people with autism, but more research on mothers. Piven has observed that sometimes the stress of having a child with a developmental disability can create family conflicts, which may cause the father to disengage.
“When you’re trying to involve families in research, it’s much more difficult to get fathers involved,” Piven said. This disengagement suggests that the fathers may face different issues than mothers. “I don’t know why the problem exists, but I’ve observed it.”
Piven sees the conference as a way to encourage fathers to explore these issues so they might play more active roles in all aspects of their children’s lives.
“But, while we want to raise awareness and start the conversation, we also want to be sensitive to the personal needs fathers have on this journey,” Piven said.
Journey with Julian
Ballen can speak from personal experience. In 2013, he published a memoir, “Journey with Julian,” in which he shared his feelings about his son’s autism diagnosis and insight into how he improved their relationship.
“He was four years of age when he was diagnosed,” Ballen said. “And it was difficult for me. There was a lack of recognition on my part. And I was disengaged and that’s why I understand what these fathers are going through.”
He said fathers tend to shrink away from the realities of their children’s diagnosis.
“It took me a while to realize that this was something that I had to really adjust to,” Ballen said. “And once I did, with the help of my amazing wife (Martina Ballen, chief financial officer of the UNC Department of Athletics), then I began to become fully engaged and I engaged with my son. This journey has been amazing.”
As an award-winning broadcast journalist, Ballen became a vocal advocate for autism research and began talking with Piven. They both noticed a trend in fathers when faced with an autism spectrum diagnosis. They become less involved. Through this conference they are hoping to give fathers a safe space to express themselves and share the experiences of other fathers in the same situation.
“We want everyone to feel comfortable,” Ballen said. “There is no judgment. We just want them to come and know that they’re not alone and to leave feeling connected.”
Building a network
The conference directors said they want to create a community for fathers to remind them they can create a network to fall back on.
Someone who has created a network is former professional and Carolina baseball player B.J. Surhoff. He is a featured panelist at the conference and will talk about founding Pathfinders for Autism in Maryland and his experience as a father of a child with ASD.
Even as he’s sharing his story and advice, Surhoff is also interested in hearing from the attendees.
“We’re constantly trying to adapt our program to help our families, trying to understand what other people might do, have done and what their concerns are,” he said.
The UNC Autism Fathers Conference hopes to have an impact by reaching out to fathers and helping them develop support systems.
The conference will be held at the Carolina Inn from 9 a.m. to 4 p.m. Sept. 14 with an informal reception to follow. There is a $50 registration fee and scholarships are available. Check the UNC Autism Research Center Facebook (facebook.com/UNCAutismResearchCenter) and Twitter @UNCAutism for information about registration.