One of the hardest places for many autistic children to be is in church. According to the National Survey on Children’s Health, autistic children are twice as likely as neurotypical children to not attend regular religious services.
“In many ways, this population is unseen because they never show up, or when they do, they have a negative experience and never return,” said Clemson University sociologist Andrew Whitehead, the study’s researcher.
My daughter Lucy was diagnosed with autism at the age of 8. I remember the exact moment I realized how stressful church was not only for her, but for our whole family. I was sitting on my couch in my living room, checking email when a message came through. Our church was renting space from a school, and for liability reasons, they asked that there be no unattended children in the hallways.
I felt a mini-bubble of panic rise. Lucy spent her church time in the hallways. Sunday school was too overwhelming for her socially, and the services were too overwhelming for her sensory-wise. How could my husband and I, who so desperately needed to hear the hope of the Gospel every Sunday, continue to participate in church if Lucy couldn’t be in the hall?
As a parent of a newly diagnosed autistic child, I didn’t know how to describe her needs to our pastor. Even now, four years and a lot of research later, I feel overwhelmed at the thought of succinctly describing autism. This is partly because scientists are continuing to learn more about the autistic brain, and partly because autism is not a single condition but rather a spectrum of conditions that can present throughout life. What scientists do know is that, due to biological differences, the autistic brain develops differently than the neurotypical brain. But the way this brain development plays out in real people is extremely varied. This is why you see some autistic people who are non-verbal and some who will talk your ear off about trains.
For us, what happened over the next four years at our church was a beautiful lesson in how to welcome and embrace autistic children and their families. When I think back on it, the accommodations that made a difference boiled down to these four things:
- our pastor took the time to get to know Lucy
- we adjusted our expectations around her sensory tolerance
- the church explained rituals and traditions, and
- our church loved us no matter how few events we could come to.
Get to know autistic people personally
There is a saying within the autistic community that, “If you meet one person with autism, you meet one person with autism.” When people imagine an “autism spectrum” they think of a single linear scale, but it’s more like a cluster of characteristics that shoot off in different directions. Compared to neurotypical people, autistic people have social differences, intense interests, a love of repetition or routines, sensory sensitivities, emotional regulation difficulties, perception differences, and executive functioning challenges. But, each autistic person has different levels of functioning within each of these areas.
“The key to understanding is to take an individualized approach,” said Dr. Claire Williams, an Associate Lecturer at Regents Theological College who is herself autistic. “No one person’s autistic profile is mirrored in another’s.”
Four years ago, when I e-mailed back my pastor to say how upset I was about the church’s decision to not let kids be in the hallway, he did something beautiful. Instead of quoting church policy, he emailed back, “Can I call you? I just want to hear your voice. I want to know more.” Then, he did even better. He came over and sat with my husband and I on our front lawn, watching our kids run around. He asked Lucy what questions she had about God, and listened to her talk about foraging for food in the forest (at the time, her autistic fascination). Then, we brainstormed a solution together of how Lucy could spend church time. This ultimately led to the church renting an extra room from the school to be a respite space for Lucy during services.
“The best accommodation is understanding and care. If I, or any other autistic person, is known then all accommodation flows from that,” said Williams.
Consider sensory issues
For unknown reasons, autism affects the brain’s ability to decode input from the five senses – smell, touch, taste, sound, and sight.
“An autistic person might be sensory seeking, which means they seek stimulation in the form of sound or touch, for example. Or [an autistic person might be] sensory avoidant – in a church this might mean they avoid loud music or the smells of incense,” said Williams.
My daughter perceives sound intensely. The loud drums and guitars of our church praise band caused meltdowns in our minivan on the way home as her overwhelmed brain tried to process what it heard. Today, we bring noise dampening headphones to church, and when she needs to, she goes to her respite room.
However, each autistic person has different levels of sensory tolerance. Autistic writer and activist Leah McElrath describes being autistic as, “like living skinless in a world made for people with skin.” For someone like Leah, a routine part of a church service, like the passing of the peace, can be not only overwhelming, but painful. Maybe just a wave or a polite nod can suffice.
Explaining is a form of hospitality
One of the ways our church made the worship service more hospitable for Lucy was to explicitly state the social expectations and reasons behind our rituals and liturgies. Many autistic people love rituals, if they know the reason behind them.
“There’s nothing I love more than a ritual—except maybe a routine,” said autistic writer Madeleine Ryan in an article she wrote for the Daily Telegraph. “The safety of rituals and routines cannot be overstated. Through establishing a pattern, I can relax.”
The problem with many church rituals is that we’ve lost the social meaning of them. Neurotypical people predict how to behave based on non-verbal cues like gestures or facial changes; standing, sitting and shouting “Amen!” without a second thought. But autistic brains don’t typically see social patterns. Thus the Sunday church hour of guessing behavior is exhausting.
Our pastor took a Sunday to deliberately explain every aspect of the church service as we worshiped together. Before we sang the opening song, he explained why we have an opening song. When he told us to stand, he explained why we stand at this point in the service. He explained why we read from the Old Testament, the Psalms, and the Gospel as part of the weekly lectionary. The explanations were copious: why we say the Apostles Creed, why and how our church does communion, all the way down to where the words from the closing benediction come from and why we say them. This slowing down and clarification created meaning in the service not only for Lucy, but for our whole congregation.
Suspend social expectations
One of the hardest things for me to adjust to, as a neurotypical mother of an autistic child, was Lucy’s social battery limit. Lucy—like most autistic people—finds socializing tiring, stressful and overwhelming. Neurologically, social communication such as back-and-forth conversation wears her brain out the way a hard workout wears out a body.
“Some weeks I’m overloaded and simply cannot participate in activities that fall in the category of fellowship; therefore, my church attendance is spotty,” writes Daniel Bowman Jr. in his book, On the Spectrum: Autism, Faith & the Gifts of Neurodiversity. Bowman is an autistic English professor at Taylor University. “Among many things the church is, it’s a complex, multilayered social environment, a gauntlet of unspoken rules and expectations requiring vigilant navigation.”
Sometimes our family just can’t show up, as much as we want to. Or, only half of our family can come while the other parent stays home with Lucy. I am deeply grateful that whenever we can show up, people are happy to see us.
“In the grand scheme of all things eternal, how big a deal is it that [a family with an autistic child] missed a deadline or showed up to church after check-in time for children’s ministry?” writes autistic pastor Lamar Hardwick in his book Disability and the Church: A Vision for Diversity and Inclusion. “Be patient with your parishioners. Don’t push. Good shepherds go at a pace that works best for their flock.”
Knowing God on the Spectrum: A Liberation Theology for Neurodiversity by Claire Williams
Disability and the Church: A Vision for Diversity and Inclusion by Lamar Hardwick
On the Spectrum: Autism, Faith & the Gifts of Neurodiversity by Daniel Bowman, Jr.