Autism and Faith
Julia is calm and matter-of-fact whenever she talks about the challenges of raising a son with autism. But when she spoke of her experience taking her son to church, she cried. It wasn't her young son's behaviors that saddened her. She knew he had trouble being quiet or still; she would simply take him outside and listen to the religious service by cracking open a door. What upset her was the time a parishioner deliberately shut that door on her, so others would not have to hear her little boy. This church had been her spiritual home for years. She expected her son to be welcome, a tenet of her faith. But they were, quite literally, outsiders.
So, like many other families, they changed congregations. At the next church she joined, she kept "Tim" inside with her during the service. Afterward, some parishioners approached her. She steeled herself for the complaints about Tim's autistic behaviors that she knew were coming her way.
Only she was wrong. These parishioners hugged her and told her she was doing a great job. They greeted her son. She had found a new home.
Our article, Autism and Faith, explores the experiences of parents like Julia (not her real name) in their communities of faith. The idea for the article came from Silvia Verga, a member of the Simons Simplex Collection autism research project. Mrs. Verga works to promote awareness and inclusion of children with autism in religious communities in New York and beyond. And some researchers studying the lives of families affected by autism are looking at their experiences at their places of worship, as one measure of overall "quality of life."
Many parents expect their children to be included in all aspects of their communities, the way they are supposed to be included at school under U.S. education policy. Sometimes they find inclusion and support in their places of worship, and sometimes, to their disappointment, they don't.
Researcher Melinda Jones Ault said that faith communities may be among the last areas of American society to adopt full inclusion of people with disabilities. People with developmental disabilities are no longer expected live or attend school apart from nondisabled people, the way they were 50 years ago, she said. But "quite a bit of segregation still happens in faith communities."
Although theologians have studied the issue for some time, she said, there is less research by special educators on inclusion at places of worship. "That makes sense because we're worried about the separation of church and state," said Dr. Ault, a professor of special education. But special educators are tasked with helping students lead full, independent lives beyond school, she said. "There are many things we have learned about how you include children in school. We can apply those same kinds of concepts to faith communities, to make inclusion happen."
If participating in a faith community is important to you, what has been the experience of your family?