How does the Catholic church respond to children with an autism disorder and to their families, especially when many parents fear that their child may act out during Mass, causing the family to experience rejection by other parishioners?
Autism is a complex developmental disability linked to neurological disorders in the brain. It typically appears during the first two years of life and affects boys more than girls. Symptoms include repetitive behaviors and difficulty with communication and social interaction.
Autism is the fastest-growing developmental disability in the United States, with reported cases growing at a rate of 10 to 17 percent a year. The Autism Society of America estimates that there are 1.5 million -- or one in every 150 children -- with an autism disorder. Autism costs $90 billion a year, according to the society.
Two dioceses have developed programs that model how the church can welcome families with autistic children, with the goal of greater inclusion, and preparation for and reception of the sacraments. One program, designed over the past few years in Newark, N.J., is the work of a determined archdiocesan director. The other, underway in the Pittsburgh diocese, was started after an incident in which two children with autism disorders were denied Communion.
Anne Masters, director of Pastoral Ministry with Persons with Disabilities for the Newark archdiocese, asked religious education teachers what they needed in order to teach children with autism disorders. They told her, “Tell us what to teach and how to teach it.”
Masters began researching autism and turned to experts from the community. “Like St. Paul, I tried to identify and use the gifts of the community,” she said. She created an advisory board of 15 people with expertise in behavioral science, language, catechetical training and related fields.
Masters said her driving ambition was twofold: to affirm the baptism of people with disabilities as members of the church and to teach parishes and catechists to include disabled people in the celebration of the Eucharist and in religious education.
To foster this, Masters designed learning aids. She created “Attend Mass” materials that parents can download and personalize.
She created 10 “parent-to-parent” tips for inclusion in the parish. For example, the tips encourage parents to meet with the pastor in advance; provide educational materials on autism for the parish; practice parts of the Mass with their child; and come prepared with an effective but discreet motivation strategy to limit distracting or disruptive behaviors.
Finally, a support group for mothers was formed with the help of a psychologist. One issue they deal with, Masters said, is the need “to let go of the child they dreamed of while pregnant by acknowledging the sadness and anger.”
In 2007, Masters and her volunteers began working with two kids and their families.
Among them are Regina Cioffi and her 8-year-old son, Thomas, who has an autism disorder. Her repeated attempts to get help from her parish left her frustrated. “I was close to converting to Buddhism,” she said. With Masters’ help, Cioffi got necessary educational materials and was introduced to the mothers’ group.
Thomas is now scheduled to receive his first Communion next spring. Cioffi’s friends from the support group helped her through an unexpected illness. The director of religious education from her parish brought her Communion and became a good friend. “They have made a tremendous difference in my life and the life of my son,” she said.
This November, Masters will be working with seven children and their families.
In the Pittsburgh diocese, when two children with an autism disorder were denied Communion, Larry Sutton, a deacon and psychologist, began to address the sacramental and educational challenges of children with an autism disorder.
Sutton serves as the western regional director for the Pennsylvania’s Bureau of Autism Services. He is also active in the National Apostolate for Inclusion Ministry.
In 2006, Sutton’s suburban Pittsburgh parish with over 2,000 families, Our Lady of Grace, initiated for kids and adolescents with autism disorders a sacramental preparation program for the Eucharist, reconciliation and confirmation. Participants come to a one-hour class every Sunday morning in the school library.
Sutton modified the Rose Fitzgerald Kennedy Catholic religious education curriculum designed for people with special needs. Children with an autism disorder learn through visual processing methods and hands-on techniques rather than traditional methods. “Pictures and social stories enable kids with an autism disorder to understand a concept,” Sutton said.
While the kids are in class, their parents are required to meet to go over their child’s study materials and to receive homework assignments. The sessions bring all the children’s parents together to exchange information and support one another.
A key to this program, Sutton said, is getting typical-learning high school students to serve as catechists, preparing them to teach one-on-one with each child. For Communion, the children practice by receiving a host and drinking from a chalice.
For the sacrament of reconciliation, parents of students without language skills were asked for examples of good and bad behavior and then picture cards were created. “We then worked with the child to understand what behaviors were bad and needed to change,” Sutton said.
Tim Hallahan, whose 15-year-old son, Sean, has an autism disorder, said that Sutton’s program has worked remarkably well. “Unlike a traditional learning environment, Sutton stresses a relaxed atmosphere which did not startle Sean,” Hallahan said. Sean was confirmed last year.
Hallahan and his wife now co-chair a parish-sponsored “Ventures Group,” which organizes field trips through the Boy Scouts for older teens with autism disorders. “All of this grew out of Sutton’s program,” Hallahan said.
In 2010, Masters expects to have enough documented experience, feedback and analysis to design a systematic plan that can be replicated in over 200 parishes in the archdiocese.
“It’s really exciting,” said Masters. “It’s going to happen, as the Holy Spirit is clearly working.”
Tom Gallagher is a regular contributor to NCR. Ideas for a “Mission Management” story? Contact him at firstname.lastname@example.org.
For additional information
For the autism program in the Newark archdiocese, see www.rcan.org, then click on Ministries/Offices, then click on Ministry with Persons with Disabilities.
Autism Services in Pennsylvania
National Catholic Partnership on Disabilities
National Apostolate for Inclusion Ministry
Autism Society of America