Autism and Faith: Inclusion and Acceptance at Places of Worship
The guilt tore into Silvia Verga with an unexpected fury. Her son had autism, and like many other mothers, she blamed herself. Was it something she did: something in the food she served, an injection she got during labor, medication her son received? As her toddler became more withdrawn and lost language, she panicked.
So she went online and selected a single, one-way ticket to her native Brazil – to a place where she knew no one. She would run away and hide. Instead of buying the ticket, however, she collapsed on the floor, and prayed: "'God, if You're real, You've got to talk to me.'" And before she got up, she knew she would stay. She would fight for her baby. Her faith in God would sustain her. He would provide spiritual healing, she said.
Mrs. Verga is not alone in drawing strength or identity from religious faith. Four-fifths of Americans identify with a religion, according to Pew Research.1 But what she did afterward – and why – highlights an important difference in the autism community, one explored in several research studies.
Her church did not have a program in place for families like hers, so she helped form one. The group, New York Christian Parents of Children with Autism (NYCPCA), promotes Bible and social groups for children, support for parents, and training for other churches on how to include children with autism. Its goal: to address "the notable lack of support" for families with special needs children, according to its website.
Many families take for granted that their children can participate fully in the lives of their churches, synagogues, temples and mosques. But the same may not be true for families affected by disabilities, especially autism spectrum disorder. Some may wonder if their children will be able to attend religious classes and services, or take part in a Bat Mitzvah ceremony or First Communion rites. Will they be included and accepted?
Studying the Experiences of Families Affected by Autism
Some researchers have recognized that participation in a religious community, if so desired, is a component of a person's "quality of life." Research into the experiences of people with autism at places of worship is limited. However, several U.S.-based studies have at least hinted at difficulties that people with disabilities may experience in participating fully in their faith communities.2-6
Families of children with autism are far less likely to attend religious services than the families of children who either are typically developing or who have Attention Deficit Hyperactivity Disorder, according to Johns Hopkins University researchers.4
The researchers used data from the 2003 National Survey of Children's Health, collected from thousands of U.S. parents, to measure the quality of life of families who have a child with autism. They found that those families were less likely to participate in non-religious activities and events, as well. Their study did not specify a reason, but noted parents face challenges when they take a child with autism out of his "home environment."4
Children with autism may have challenging behaviors that require a parent's constant and undivided attention, explained lead investigator Li-Ching Lee Ph.D., a psychiatric epidemiologist at Johns Hopkins Bloomberg School of Public Health. Such behaviors might include wandering or running away, hitting themselves, intense tantrums or other problem behaviors.
Besides the need for vigilance, parents may have to contend with a curious or disapproving public. Some parents are familiar with the icy stares of people who mistake their child's autistic symptoms for misbehavior or poor parenting.
Or, as Dr. Lee explained, "Other people may not understand the child's behavior."
For some parents, it may just seem easier to stay home.
The same may be true for adults with disabilities. A survey for the Kessler Foundation and National Organization on Disability found that adults with disabilities are less likely to attend religious services than other adults.5
Where are the Believers with Disabilities?
Many parents had positive stories to tell, but others had incredibly sad stories to tell of discrimination and negative attitudes. However all spoke about the experiences with passion. They either described many stories of acceptance and love or were affected negatively when a negative experience occurred.
Melinda Jones Ault Ph.D., a professor at University of Kentucky, looked around her own place of worship and wondered where the people with disabilities were. A longtime special educator, she said, "I knew they were out there." So she began studying the experiences of parents who have a child with a disability, including autism.
Her research team found that a third of the 416 parents surveyed had changed their place of worship due to a lack of inclusion or welcome, and 46 percent refrained from participating in an activity because their child was not included or welcomed.6, 7
"Those numbers were surprising to me, but even more surprising was the passion with which parents described their experiences," Dr. Ault said. "Many parents had positive stories to tell, but others had incredibly sad stories to tell of discrimination and negative attitudes. However all spoke about the experiences with passion. They either described many stories of acceptance and love or were affected negatively when a negative experience occurred."
Parents may become particularly upset if they feel unwelcome at a place of worship because they expect a greater level of acceptance there than they do in the world at large. Some used "inflammatory" words like pitiful, betrayal and disgraceful to describe bad experiences at their places of worship, she said. One father considered changing his religion entirely – not just his place of worship – after very few members of his congregation showed up for a religious ceremony involving his son with a disability, she said.
A different study of 58 parents of children with disabilities found similar results. The parents generally rated their children's participation and support in their faith communities as "positive and important." At the same time, more than two-thirds reported at least one negative experience, and more than half had been excluded from activities, according to research by Towson University lecturer Elizabeth E. O'Hanlon Ph.D.8
The Americans with Disabilities Act, the landmark 1990 law that requires that places be accessible to people with disabilities, does not apply to religious organizations, in most cases. Religious groups do not have to provide wheelchair ramps and elevators, although many do so anyway. Given that exemption, are they likely to focus on modifying curriculum or printed materials?
A majority of the parents in Dr. Ault's study said their congregations did not have supports for including their children or special religious materials for them. More than half had been expected to stay with their child in order for him or her to participate.
Other parents, however, reported good experiences. Some congregations provided aides or same-age peers to help members with disabilities, or had supports so children with special needs could be included in religious classes.6
The Effect of Autistic Behaviors on Support
Her research uncovered one interesting difference in family experiences. The parents of children with intellectual disability were much more likely to say their place of worship was supportive than the parents of children who have autism. "I really don't know why," Dr. Ault said.
A few parents singled out the behavior of their children with autism as an issue for others, Dr. Ault said. One mother of a teenager with autism told researchers, "There is either fear or resistance because of my child's behavior. We are just not welcome." The mother of preschooler with autism told a similar story: "I brought my son to a cookout, and nobody knew how to come up to me. I felt like I was making them uncomfortable. They would look at him funny when he would start stimming." Stimming refers to repetitive behaviors common to autism, such as hand-flapping, rocking, spinning or making noises.
Some congregations may be unfamiliar with autism, said Mrs. Verga, whose group, NYCPCA, promotes autism awareness. "Autism is new to churches, and it can cause discomfort if members of churches do not know how to deal and what to expect when an autism family walks in," she said.
A mother in Illinois once contacted her after a bad experience at Christmas services. Her son with autism made noises, prompting harsh stares and a chorus of "shushes." So Mrs. Verga contacted the church with information about autism. She also has helped a family looking for a church that would adopt modifications to help a girl complete the steps for Confirmation in her faith.
Embraced by Her Church, Helping Others with Autism
"I believe God has a plan for every individual He put on this earth. I want people to see a child with autism as a gift, not as someone who is damaged."
Like many other families with special needs, the Vergas have been warmly embraced by their faith community. They attend Astoria Community Church in Queens County, New York. Son Jeremy is now 10, a fifth grader who adores his older brother, charms his teachers, and "talks like he is a teenager," said Mrs. Verga, who is studying for a master's degree in human services.
She has moved past the guilt and the what-if's, and has looked to science and evidence-based research. Her family participated in the Simons Simplex research project for families that have one child with autism. Like other Simons families, she hopes the research will advance knowledge about autism.
She believes in taking time to enjoy her son for who is he, rather than becoming obsessed with therapies to "fix" him. "I believe God has a plan for every individual He put on this earth. I want people to see a child with autism as a gift, not as someone who is damaged," she said.
Her words illustrate some of the findings of researchers studying the role of religious faith in the lives of families affected by disability. Some families "spoke about how they used their faith as a way to make some sense of having a child with a disability. For many, they view their child as a gift from God," according to researchers Denise Poston and Ann Turnbull.3
Mrs. Verga tells of the spiritual healing she experienced when "God brought me to my knees" in that moment of guilt and despair over Jeremy's autism. "I don't mean he will never have autism symptoms, but to me my son is already healed, seeing all the progress he has made and the way God has worked in his life," she said.
She knows the future may not be smooth. "There will be times that are hard for him, transition is hard for him, but I don't see that as a burden, just an issue that needs to be addressed – an issue that God will give me the strength and patience to deal with."
- Pew Research Center (October 9, 2012) "Nones" on the Rise: One-in-Five Adults Have No Religious Affiliation. Retrieved on 2/4/14 from http://www.pewforum.org/files/2012/10/NonesOnTheRise-full.pdf.
- Griffin, M.M., Kane, L.W., Taylor, C., Francis, S.H. & Hodapp, R.M. (2012) Characteristics of Inclusive Faith Communities: A Preliminary Survey of Inclusive Practices in the United States. J Appl Res Intellect Disabil. 2012 Jul;25(4):383-91. View abstract.
- Poston, D.J. & Turnbull, A.P. (2004) Role of Spirituality and Religion in Family Quality of Life for Families of Children with Disabilities. Education and Training in Developmental Disabilities, 39(2), 95-108. View abstract.
- Lee, L-C, Harrington, R.A., Louie, B.B. & Newschaffer, C.J. (2008) Children with Autism: Quality of Life and Parental Concerns. J Autism Dev Disord. 2008 Jul;38(6):1147-60. View abstract.
- Harris Interactive, Kessler Foundation, National Organization on Disability Poll. May 5-June 3, 2010. The ADA, 20 Years Later Executive Summary. Retrieved on 2/4/2013 at http://www.2010disabilitysurveys.org/pdfs/surveysummary.pdf.
- Ault, M.J., Collins, B.C. & Carter, E.W. (2013) Factors Associates with Participation in Faith Communities for Individuals with Developmental Disabilities and Their Families. Journal of Religion, Disability & Health 17:184-211. View abstract.
- Ault, M.J., Collins, B.C. & Carter, E.W. (2013) Congregational Participation and Supports for Children and Adults with Disabilities: Parent Perceptions. Intellect Dev Disabil. 2013 Feb;51(1):48-61. View abstract.
- O'Hanlon, E.E. (2013) Religion and Disability: The Experiences of Families of Children with Special Needs. Journal of Religion, Disability & Health, 17:42-61. View abstract.
Photo credits: 1) Silvia Verga, 2) Dr. Lee at Johns Hopkins University. Reprinted with permission.