“I just might have a problem that you’d understand, we all need somebody to lean on….” Sitting in the stands watching my 10-year-old son sing the lyrics to this song took me back to every youth event I was a part of in the 80s. It made me smile.
Jackson loves music. Performing before a crowd is something he takes seriously and enjoys. Knowing every word, he was singing intently, his eyes focused on his choir director. As the children sang, they also incorporated motions that reflected their words – holding up four fingers as they sang, “For!” and pointing to their knees as the word “need” rolled off of their tongues. You get the idea.
Bouncing my foot to the rhythm of the song, I was akin to any other mother in the crowd: watching my child sing and smile and even sappily thinking of all those who had been there for me when I needed someone to lean on.
“People who have autism know they aren’t ‘normal’ because the world projects its fear and exclusivity onto them. But, it doesn’t have to be this way.”
But then the climate of the show shifted. I felt a chill. My foot stopped keeping time, my hands clenched, and anxiety tightened deep down in my belly. As “we all need somebody to lean on” filled the room and rose toward the ceiling, the children began pairing off to lean on their partner, backs pressed together and arms crossed across their chests, as they sang.
Helplessly, I watched as Jackson turned to one side to find no one to lean on and then shifted to his other side to find only another void. Again he turned from one side to the other and then awkwardly shifted his body toward the audience, his hands limp at his sides. Jackson knew the words. He knew the motions. He knew when he was supposed to pair up and lean in. What he did not know was what to do when he needed to lean in and there was no one there to catch him.
I didn’t know what to do with that either. I still don’t. Seeing that scared and uncertain look in my son’s eyes as he looked for a partner and was left with none made me feel scared and uncertain too. Hot tears pricked my eyes as I looked at those other pairs of children singing and smiling.
Dancing before my eyes was the embodiment of a fear embedded deep in the tissue of my being. Images of Jackson as a middle school student in a crowded cafeteria searching for a friend to sit with. Jackson asking a girl to prom. Jackson interviewing for a job. Jackson taking a seat in his first college class. And the card atop the quivering tower: Jackson as an adult after I have died, in the hospital, needing help, needing someone to lean on for support. . . . Tears puddled and dripped down my face, smearing my mascara and my facade of normalcy.
Grief can be so sneaky sometimes. One moment our fingers are intertwined as we stroll down the road of new perspective together. Around the curve, grief sticks his foot out in front of me and sends me sprawling – grasping at air and landing in the gravel. Crimson blood beads up from the scrape. I feel betrayed. Just when I think I know grief and even appreciate his companionship, he goes and does something like this. I reach for one of my son’s Star Wars Band-Aids and wish that I was indeed in a galaxy far, far away.
“It’s difficult to put into words what it is like to hear your young son say, ‘I just wish I was a normal boy. Will I ever be normal?’”
Instead, I sit in the here and now, parenting a son who has autism and navigating complex emotions that are now part of my daily life. The Center for Disease Control states that 1 in 59 children has been identified with autism spectrum disorder (ASD). If the trend stays the course, we know this number will continue to rise.
How is the church responding to this growing population? According to an article published last year in Christianity Today, children with autism and their families are unlikely to feel welcome within our congregations. One study showed:
Sanctuaries were much more sympathetic to children with health conditions such as asthma, diabetes, epilepsy, or vision problems. Those children were as likely to be in the pews as children with no health conditions.
But children with conditions that limit social interactions, who are often excluded from other social settings and have the greater need for a community of social support, were most likely to feel unwelcome at religious services.
This is one of those times we can clearly see that our preaching the Gospel and our practicing the Gospel are fractured. Jesus was one to seek out those who lived on the fringes of culture and belonging. He welcomed them with open arms.
I believe Jesus would not only have noticed those with autism; he would also have recognized their need and desire for relationship and community. It is a common misperception that variant social skills equals lack of desire for friends. Men and women, boys and girls who have autism are often part of this group on the outskirts. The tears my son has shed in response to not being invited to a birthday party or a playdate are matched only by my own. It’s difficult to put into words what it is like to hear your young son say, “I just wish I was a normal boy. Will I ever be normal?”
“Church, let’s lead the way toward a safe and welcoming environment for children and adults – and their families – who have autism spectrum disorder.”
And, there it is. The quest for normalcy. Our passports are stamped when we walk into the classroom, onto the playground and, far too often, when we enter the sanctuary. Do you belong here? Are you like us? People who have autism know they aren’t “normal” because the world projects its fear and exclusivity onto them. But, it doesn’t have to be this way.
Jackson has the rare experience of having autism and being a pastor’s child. Our church has consistently welcomed and loved him his entire 10 years of life. He and I sit on the third row from the front every Sunday, right in the middle. Nearly every Sunday Jackson stims at some point during the service. (To stim is to engage in repetitive actions such as flapping hands or spinning in a chair, typically performed by people who have autism.) This used to unnerve me, but now it is a reminder to me that from the front pew, my son serves as a beacon of light that all are welcome here.
We are fortunate to worship in such a loving community. This fortune should not be something so rare it can only be found at the end of a rainbow. It should be freely offered in all of our congregations.
Church, let’s lead the way toward a safe and welcoming environment for our children and adults – and their families – who have autism spectrum disorder. April 2 is World Autism Awareness Day. That would be a good day to covenant together to learn about autism, to invite the child on the outskirts to the birthday party, to notice the one who sits alone and make room on our pew for them.
When the world turns its back, may we be the ones with arms outstretched, ready to catch those who need somebody to lean on.
Christy Edwards is a hospital chaplain in Kansas City, Missouri. She lives in nearby Liberty with her husband, Jason, and their three children. This article originally appeared April 2, 2019 in Baptist News Global.