By Kaitlin Candelaria
One out of every 68 children in the United States will be diagnosed with autism. That’s 3.5 million people living in the United States who fall somewhere on the autism spectrum, a number that has more than doubled since 2000.
These are the statistics behind the mission of KultureCity, an international nonprofit based in Vestavia Hills. KultureCity is the brain child of Dr. Julian Maha and his wife, Dr. Michele Kong.
“The idea came about the day they left Vanderbilt with their son’s autism diagnosis,” Diane Zaragoza, community outreach and education specialist for KultureCity, said. “They started thinking about what a life-changing situation that would be for their family, but also about other families who didn’t have the same opportunities and means they did. They didn’t want to just focus on the research, but also on the here and now kind of needs.”
And so they did. The Mahas set out to shake up the typical nonprofit model; their team consists of volunteers from all over the country and their focus is fulfilling the tangible everyday needs of children with autism while promoting acceptance.
KultureCity, founded in 2013, aims to change not just the daily lives of autistic children, but the way autistic people are perceived and treated in society long-term.
“Now, we’re introducing ourselves to companies and talking to them about how they could help with this growing population and be a part of them becoming self-supporting,” Zaragoza said. “We like to think we can help these children by being an incubator of sorts where businesses can see how they can help employ autistic individuals.”
Local special needs activist Dustin Chandler recently teamed up with the organization to create Ignite, the first special needs advocacy and think tank conference in the world. The conference will take place Aug. 13 in Birmingham and feature autism advocates and celebrities from all over the country.
Chandler, whose daughter, Carly, has special needs, said he shared a vision with Julian Maha from the beginning.
“We want to empower the special needs community,” Chandler said. “In my personal opinion, we think of society as being really inclusive but truthfully, we have a long way to go. It’s going to be great to see how people are thinking outside of the box when it comes to healthcare, education and employment and I think we’re going to bring those issues to the surface at Ignite.”
Julian Maha describes the difference as moving from awareness to acceptance. In the mission statement for KultureCity, he explains the day he realized that acceptance had to take precedence. His son, Abram, was having a meltdown during a haircut when another patron of the barbershop asked him, “Do you not know how to take care of your child?”
“It was at that moment when I realized, that what we as a community needed was not awareness, but acceptance,” Maha wrote on the KultureCity website. “You see, there is a fundamental difference between awareness and acceptance. Awareness always gives you an out. Acceptance does not. That was the birth of KultureCity. Little by little, we are changing the kulture (sic) and pushing boundaries.”
Danielle Goudie of Cahaba Heights was struggling with acceptance herself when she discovered KultureCity. Her son, Asher, received an autism diagnosis in December 2013.
“You become isolated,” she said. “You have to plan your outings because of behavior and sensory issues and things like that. I started seeking out extra support that we weren’t getting with the more traditional research-based organizations. KultureCity was actually doing things in the community.”
According to Zaragoza, isolation is a common feeling among the parents of children with whom KultureCity works.
“A lot of the families stay at home because they’ve just gotten tired of being looked at when they’re out,” she said. “If their child starts going through one of their behavior patterns, people say things and whisper. We want people in the community and people in society as a whole to recognize that the future of our country is in our children’s hands, and at the rate autism is growing, a lot of the future will be made up of autistic children.”
Goudie said she fell in love with the organization after attending several sensory-friendly activities with Asher, including outings at the Birmingham Zoo and with the Birmingham Barons. KultureCity also has provided Asher with an iPad and sensory hearing devices as well as assisting Goudie with paying for continued therapy at Mitchell’s Place, which she says is very effective but also expensive.
“I’ve always loved fundraising and working with charities but I’ve never been involved with an organization that is so involved and hands on,” she said. “You can feel the difference they’re making in the community. Asher’s life is probably going to be a lot less challenging because of the difference they’ve made in our lives.”
Gouide says that’s all she’s ever wanted for her son.
“My biggest fear when I found out he was on the spectrum wasn’t, ‘Oh God, what’s going to happen?’” she said. “It was, ‘Oh God, life is already challenging enough.’ When you have someone who has issues expressing themselves, how do you make situations easier for them? I can’t give back to KultureCity what they’ve given me and especially Asher.”
Contributing to society
Creating a world where children with special needs don’t have to fight such an uphill battle is one of the goals of the Ignite Conference.
“We want parents to know that no matter what their child’s diagnosis is, they can be a huge contribution to society,” Chandler said. “We want our children to be integrated and for society to be more inclusive. The idea for Ignite started with a phone call between Julian and I about how to get to people. We can’t keep waiting on people to create it, we’ve got to create it ourselves.”
One speaker at Ignite will be Steve Andrews, CEO and founder of Platinum Bay Technologies. Andrews was diagnosed with Asperger’s Syndrome in 2010 and in turn designed his company around employing people on the autism spectrum.
“I don’t think we stop at hiring someone to be a bag boy or letting them do a remedial task,” Chandler said. “The Ignite Conference is saying our kids have value in society so companies, why don’t you look at hiring more of them? We’re everywhere and our families are just as important and so is our money.”
Ignite will come on the eve of KultureBall, the nonprofit’s annual black-tie fundraiser. Attendees will be treated to a star-studded evening that will include dinner, live and silent auctions and entertainment. Celebrities such as Tiki Barber and M.L. Carr also will be in attendance. Tickets are $99 each and can be purchased at www.kultureball.com.
Zaragoza and Chandler both agree the difference that KultureCity is making is just getting started.
“The people in our community want to help,” Chandler said. “But many of them just don’t know the issues or how to begin to help. We really want to push this and make the general public aware and lead by example. Other people and businesses will hopefully follow.”