We feel alienated. We’re scared to tell you about our son’s ASD. We don’t want you to treat our daughter any differently than other kids. Sometimes we don’t understand our child’s behavior any more than you do. We feel judged. He isn’t a bad kid. She’s not trying to be disruptive. We’re not bad parents. Sometimes we feel so shamed at church. We’re so exhausted. We can’t worship because we’re too busy preparing ourselves for that “it-didn’t-work-out-today-with-your-son”look from the Sunday school volunteer. Please don’t define her by her diagnosis. We love our child so much. Some weeks it just feels easier to skip church. We feel so isolated.
But Robin Davis, director of the Richmond Autism Integration Network and mother to a son on the autism spectrum, says it really boils down to one answer.
“Honestly, more than anything, we just want support and a community that will accept and love our family, regardless of a diagnosis.”
Since August 2014, Davis and RAIN have been in partnership with Bon Air Baptist Church at the Village in Richmond, Va., to establish just that: support, acceptance and love.
A year ago, Bon Air Baptist Church and RAIN had nothing particular in common — just a desire to connect with their community. Bon Air, a multi-site Baptist church based just west of Richmond, commissioned the Village Campus and its pastor, Jake Maxwell, in the fall of 2013 to engage young adults and other largely unchurched populations.
Davis founded RAIN five years ago after leaving her job with the state of Virginia and committing to resource and integrate families living with ASD in her community.
Today, the two organizations not only share ministry space in the Village neighborhood just north of the University of Richmond; they share an unpredictable partnership committed to resourcing and surrounding families living with ASD in loving community. But there’s nothing predictable about listening for how God is at work around you, Maxwell explains.
“We launched the Village campus with a few answers, but the whole time we were still listening and asking, ‘What does God have for us here?’ We discovered God most among families living with autism, who aren’t necessarily suffering from extreme violence or oppression, but are just as crushed by anxiety and not knowing what to do. Our eyes were opened to an entire community of people around us that we had never noticed.”
In addition to Bon Air, faith communities across the country are beginning to take notice of ASD and its growing prevalence. In 2014, the Center for Disease Control and Prevention identified about 1 in 68 children living with autism spectrum disorder in the United States. This latest estimate stands 30 percent higher than the estimate for 2008 (1 in 88) and 120 percent higher than the estimate for 2002 and 2000 (1 in 150). The CDC also discovered that nearly half of children living with ASD have average or above average intellectual ability (IQ greater than 85). ASD is reported in all racial, ethnic and socio-economic groups, and is almost five times more common among boys than among girls.
As Bon Air began to learn more about ASD, they quickly discovered that their school district was desperate to partner with organizations supporting families with ASD.
Furthermore, families living with ASD began to emerge from the congregation itself, offering their experience and time to resource other families seeking support. So together, Bon Air and RAIN began organizing resources that are available to families living with ASD through the community, city, state and other organizations. In addition, Davis and her staff provide coaching for parents as they discover more about their child’s place on the spectrum and plan with guidance counselors at their son’s or daughter’s school.
“As parents of children with ASD, we’re constantly trying to offer our kids support, but it’s exhausting,” Davis says. “If I have a big problem, I go to God and I go to my pastor or my church community, but a lot of people living with autism can’t do that because even the church doesn’t know what to do. As a person of faith, I wanted to be part of a bigger movement with churches who wanted to meet this community where they are.”
In order to provide that support, Bon Air and RAIN offer a camp for children ages 8 to 18 with ASD during spring break, summer break and winter break called Camp Free2BMe, which provides arts, crafts, games and field trips for children at a time when parents struggle most to find child care. In addition, they host Social Saturdays, a weekly four-hour session in which children with ASD are paired with mentors from the congregation to practice crucial life skills and therapeutic activities including cooking, art, music, chess club and science club. On two occasions, 20 students from Virginia Commonwealth University and the University of Richmond came to Bon Air to volunteer with RAIN.
By far, Maxwell says, the most popular opportunity they created through the partnership was a special-needs prom for students on the autism spectrum. Because students with autism are often overwhelmed by high levels of sound and light, they cannot attend traditional prom through their school system. But with the help of parents and volunteers from the congregation, Bon Air and RAIN created a prom in February, complete with a red carpet, paparazzi, special lighting and low music.
The football team from the University of Richmond even came to trade dance moves with the students.
“One of the most beautiful things is that, unlike myself and every other human being, autism doesn’t discriminate based on age, race or ethnicity,” Maxwell explains. “So this has the most culturally diverse expression of church that we have been a part of in our ministry here at the Village. We had all of these families come from various socio-economic and ethnic backgrounds, and it has transformed us all.”
Maxwell says Bon Air is far from exemplary in its mission to engage families living with autism but is more aware than ever of the calling to integrate the ASD community into its rhythm as a church. So as churches in the United States face a growing population of individuals with autism spectrum disorder, how can they take similar steps to more fully integrate families with ASD into the faith community?
Amy Fenton Lee, author of Leading a Special Needs Ministry and consultant for helping churches include families with ASD, says the church must begin to understand autism. The first step, however, is understanding what these families and individuals face within the church.
“Every single parent of a child with autism will tell you that they’ve felt judged before,” Lee says. “But often, the family doesn’t know whether or not to be honest about their child’s diagnosis in the first place because they fear the church will label their child and limit his or her social circle. If a child is identified with autism, he or she is often misunderstood as having bad behavior, being defiant or unpredictable, so families can often feel a great sense of shame from their peers, as if they have failed to teach their child right and wrong.”
The good news, Lee says, is that addressing these issues of alienation and integrating families into the community of faith is not an insurmountable task. The most important thing churches can remember is that integrating families with autism more fully into the congregation is completely attainable when the goal is to learn, understand and seek solutions. Lee keeps an ongoing blog of resources for helping churches include children with special needs at theinclusivechurch.wordpress.com.
Beginning in June, Bon Air will host RAIN’s summer session of Camp Free2BMe for the first time at their ministry building. In addition to learning activities, church volunteers will spend time with the students each morning providing devotions and having conversation about what it means to be created in God’s image. Davis says there’s no question that children living with autism are fully created in the image of God and that they may have more to offer the church than the church has to offer them.
“If you look all through the Bible, people with special needs are close to God’s heart,” Davis says. “It’s crucial that the church include them, not only because it’s what God wants, but because they can learn so much from folks with special needs that will enhance their experience of God and the church.”
— This article was first published in Herald, BNG’s magazine sent five times a year to donors to the Annual Fund. Bulk copies are also mailed to BNG’s Church Champion congregations.