As she towered like a giant over the little ones playing on the floor, I was thinking, "She does not belong here!" My anxieties rose when she paid no heed to the babies under foot, tripping over my son, who began to wail. Wanting to keep the little ones safe and starting to panic, I left a teen helper in charge and rushed off, desperate to find the girl's parents, not even knowing who to look for. I needed help fast, and help to me just then meant I had to get this strange girl out of the toddler room where she did not belong!
Jesus said, "Don't stop children from coming to me! Children like these are part of the kingdom of God" (Matthew 19:14, God’s Word Translation. No one would dare say this aloud: "Jesus, at our church we love children and would never stop them from coming to you. Unless, of course, they have autism." Too often, however, I hear of congregations that find more subtle ways to express the same message. I said it with my own actions that morning twenty-some years ago. The reality is that autism catches most of us unaware. Without deliberate attention to increasing our congregational hospitality to children like these, we are liable to replay the panic and lack of welcome I expressed that morning. Like so many, I was poorly prepared to encounter autism, and all too ready to push a child away.
Youth relaxing while waiting for the trolley in downtown Elkhart, BOSS 2013
It’s 25 years later and autism has taught me a lot. I continue to learn from children like these and their parents. I have learned that the autism spectrum is incredibly diverse, describing those who cannot speak and require round-the-clock supervision, eccentric rocket scientist types who get by with a minimum of social graces by amassing valuable technical expertise, and a wide range in between. Our highly social world, church included, presents significant challenges to all of them. (I use the terms autism and autism spectruminterchangeably in this article, since the latest diagnostic manual merged all autism spectrum conditions into one category.)
According to the U.S. Centers for Disease Control, one child in 88 lives with an autism spectrum condition. Other studies have found the frequency to be as high as one in 50. If your congregation does not include a family or families affected by autism, odds are it will soon. In simplest terms, all those on the autism spectrum share marked differences in social communication and restrictive interests or repetitive behaviors.
"Autism is one word attempting to describe millions of different stories," observes blogger Stuart Duncan, the father of a child on the autism spectrum. These ever-multiplying stories present congregations today with an invitation to listen attentively and discover new ways of offering hospitality to the growing number of families touched by autism.
Supportive communities can make an enormous difference for families struggling to cope with a sometimes-baffling condition that runs roughshod over parents’ expectations and dreams, and shapes family life in unimagined ways. Faith communities that look for and remove barriers to belonging for autism families can do a great deal to lessen autism's sting.
An important beginning for those who want to support autism families is listening without judgment. Further support will be most helpful if it matches the particulars of a given family's stories. A friend who listens without criticizing or jumping in too quickly with solutions can break into the isolation that is a painful reality in most autism families. If we listen a bit longer before speaking, we may hear the reason why solutions that seem obvious to us would impose an impossible burden.
BOSS youth volunteer at therapeutic riding center, BOSS 2013
As we listen, we will hear stories of resourceful parents who love their children and cling to hope, and of children with surprising gifts that others often overlook. We may also hear stories that include these:
- A child with few or no friends, bullied by peers for being different
- A child's anxiety that shows up as "stubbornness," overwhelming fears, and tantrums
- A child easily overwhelmed by the visual stimulation, loud sounds, or smells others enjoy
- A family with difficulty participating in church life due to a child's needs
- Financial resources inadequate to cover needed treatment
- Strained marriages or extended family relationships
- Parents ashamed of their need for help and their child's differences
- Parents who are exhausted or depressed
- Parents fearing for a child's future
Depending on the specifics that emerge in the stories you hear, some of the following approaches to support may be appropriate in your congregation:
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Look for ways to help the family build trust and share their stories with a wider circle. Create opportunities to share information with sensitivity and respect that will help others understand and respond graciously to unusual behavior they observe. Consider providing basic information about autism to Sunday school teachers, youth workers, ushers, and the child's peers. With parental permission, a story in the newsletter might introduce a child to the whole congregation.
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A circle of support for one or both parents may carry the family through a particularly rough period. Look for supports that are sustainable over the long term. Cultivate patience when struggles persist and new ones emerge. In my own experience, a friend coordinated a small group of caring people who took turns inviting me out once a week for coffee and conversation during my children's teen years, when crises were exploding day by day. Childcare to make such respite breaks possible is an added blessing needed by many families. With the family's permission, coordinators of a support circle can share tangible needs with those who could help out. One example might be giving the cell phone number of someone who is willing to show up occasionally on a moment's notice when tempers are flaring and safety is at risk.
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Recruiting an intentional circle of friends in the congregation for the child can be an effective way to deflect problems and reduce opportunities for bullying. This involves teaching a group of relatively mature peers what the child's unusual behaviors might mean, along with helpful responses. Such buddies give children with autism invaluable opportunities to practice social skills with peers.
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Consider modifying the environment or providing adaptations in order to moderate sensory stimuli that cause the child pain. The loud sound of amplified music is a frequent offender. Can the volume be turned down, or can sound-dampening headphones be available? Some congregations that project words and visuals on a screen will post a subtle visual cue to warn when loud music is about to begin. Others have established a fragrance-free zone in their worship space and converted to fragrance-free janitorial supplies. Sound-dampening panels installed in fellowship areas will benefit far more than just those with autism.
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Look for ways that unique gifts of the person with autism can contribute to congregational life, even if it stretches the bounds of tradition. If God has graced a person with a strong interest in deep-sea animals, for example, finding an avenue to share it with a congregation will take creativity, but also promises to strengthen relationships and appreciation for the wonder of creation.
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Use a visual schedule to help a child understand what is coming next; it often quells anxiety and wards off problem behaviors . Individuals on the autism spectrum typically thrive on predictable routines. Those who are not fluent readers may benefit from a picture schedule, displayed either on a bulletin board to a whole group, or on something portable for a specific child. Using hook and loop tape or magnets to attach pictures to an envelope or ruler allows pictures to be rearranged to reflect anticipated changes.
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Finally, recognize that many of the challenges that autism brings to a family are lifelong. Children with autism grow up to become adults with autism. The congregation may be a resource to connect an adult with autism to a job or meaningful volunteering. Church members who make ongoing efforts to include adults on the autism spectrum may be shining stars to those with few friends. Aging parents of adults with autism may appreciate help planning for their loved one after they are gone.
As your congregation learns to receive graciously the people with autism stories whom God is bringing to your doorstep, may you more deeply recognize the kingdom of God in your midst and open yourselves to its transforming power.
As your congregation learns to receive graciously the people with autism stories whom God is bringing to your doorstep, may you more deeply recognize the kingdom of God in your midst and open yourselves to its transforming power.
Christine Guth wrote this article as program director for Anabaptist Disabilities Network. She is a founder of Asperger-Autism Group of Goshen, and a member of 8th Street Mennonite Church in Goshen, Indiana. She continues learning about autism from her husband Bob and their two adult children.
This article first appeared in Leader (Winter 2013-14). Reprinted by permission.
Photos by Cindy Warner Baker, director of
BOSS (Building Opportunities through Service and Skills), a summer day camp for youth on the autism spectrum offered with the support of several Mennonite congregations, Indiana University Health Goshen Hospital, Goshen College, Autism Goshen, Autism Society of Indiana, and many others. The program involved youth with and without autism in a variety of recreational and service experiences together. Cindy
attends Berkey Avenue Mennonite Church, Goshen, Indiana, and was one of the founders of Anabaptist Disabilities Network.
Recommended autism resources
Autism and your Church : Nurturing the Spiritual Growth of People with Autism Spectrum Disorder. Barbara J. Newman. 2nd edition, Friendship Ministries, 2011. A wealth of practical tips from an experienced special education teacher with a passion for nurturing Christian faith in children of all abilities. Includes suggested text and copy-ready images to create visual schedules, introduction stories, and other resources. A chapter on managing challenging behavior is new in the 2nd edition. Also available in Spanish.
Autism and Faith: A Journey into Community. Mary Beth Walsh, Alice F. Walsh, and William C Gaventa, eds. Elizabeth M. Boggs Center on Developmental Disabilities, 2008. A collection of short articles from scholars, educators, clergy, social workers, and parents of diverse faiths. Topics include the impact of autism on community and family life, the value of belonging to a faith community for persons with autism, a theological basis for inclusion, practical ideas, engaging the gifts of people with autism, and more. Order ($5.00) or download (free) from the Boggs Center, www.rwjms.rutgers.edu/boggscenter. Also available in Spanish.
Inclusion Tool Box: 52 Practical Ideas to Include Individuals with Disabilities
(DVD).Barbara J. Newman. CLC Network, 2012. An excellent video for training teachers, volunteers and mentors of children with autism, ADHD, and other disabilities. Newman brings thirty years of classroom experience in inclusive Christian schools to this presentation packed with practical ideas for including children with disabilities in faith communities.
Supportive Care in the Congregation: Providing a Congregational Network of Care for Persons with Significant Disabilities.
Dean A. Preheim-Bartel, Aldred H. Neufeldt, Paul D. Leichty, and Christine J. Guth. Revised edition, MennoMedia, 2011. Outlines a model for including families with complex and ongoing disability-related needs in a congregational network of care. Includes extensive listings of related resources and an Anabaptist Christian theological rationale for supportive care.
After We’re Gone: A Christian Perspective on Estate and Life Planning for Families That Include a Dependent Member with a Disability.
Duane Ruth-Heffelbower. Revised edition, MennoMedia, 2011. Making provisions for a dependent person's physical, emotional, and financial well-being after the death of a caregiver can be complex and confusing. After We’re Gone introduces options and resources for the Christian family and faith community as they work with the legal system to make provisions for the ongoing care of loved ones with disabilities.
Inclusion Handbook: Everybody Belongs, Everybody Serves.
Terry A. DeYoung and Mark Stephenson, eds. 2nd edition, Faith Alive Christian Resources, 2013. An introductory guide for inclusion of people with disabilities within the church. Topics include etiquette, grief, preventing negative behaviors, autism, and many more. The second edition includes new articles by disability advocates from several Christian traditions.
Anabaptist Disabilities Network (ADNet), www.adnetonline.org , phone 574-343-1362. Resources and consultation to support churches as they include persons with autism and a wide range of other disabilities. Autism pages include resources for explaining autism to children and youth, a sample story for introducing a child with autism to the congregation, and "Horses Live to Run," an essay about life in Christine Guth's autism-spectrum marriage and family.
The Inclusive Church, theinclusivechurch.wordpress.com. Blog by Amy Fenton Lee focuses on equipping children's ministry teams and church leaders for successfully including children with special needs. Includes abundant autism resources and best practices gleaned from interviews with church leaders, parents and disability professionals. Photos illustrate step by step how to create visual supports and many other tools for use with children in church settings.