I Stopped Worship Sunday to Care for My Autistic Child

Every pastor will tell you that there are worship experiences that they would rather forget. There could be a lot of reasons for this, low attendance for worship, perhaps the sermon did not connect as they would have liked, or several other reasons.

Worship this past Sunday is one I would like to forget, but I probably will not be able to. I had to stop worship to care for my autistic child.

Before I go into the reasons for it, some context is perhaps appropriate. Each week, I play two roles in worship. I am a pastor and the father of a low-functioning, high-needs autistic child (Noah). He is someone who gets easily overwhelmed in crowds and places with high-pitch noises. Even with his headphones on, organ music is like nails on a chalkboard for him. He would much rather hear a piano or guitar, but that is beside the point. 

For the first 15 minutes of worship, he is in the sanctuary before going to the children’s wing and the comfort of the sensory tent (which he spends a lot of time in each week). That means he is with my wife and our youngest child. She tries to keep him calm and navigate the needs of our toddler. All while I am upfront leading the congregation in worship.

I focus on my family during that time. There are questions that run through my mind. Is Noah okay? Does Abbi need to walk him out? Do they need me?

There are subtle clues that both of us can recognize that tell us that he is getting overwhelmed. Signs that to a congregant might seem like he is a little restless. On Sunday, Noah was on the verge of a complete meltdown, and there was nothing we could do about it. The combination of a week of fireworks, high-pitched music, crowds, and being out of routine had finally worn him down to where he could take no more.

Worship is often the least-inviting experience for an autistic individual and their family. We feel the struggle weekly of being a pastoral family, wanting to be in church, but knowing it can create situations that put Noah on edge. 

While it might look like Noah is calm or just a little restless, we see what he deals with each week. Noah’s restlessness is the outward sign of his inward wrestling of trying to fit in each week for worship. He fights his own battles to maintain a sense of calm because he loves church and worship. That fight only enhances the feelings of being on edge. By the time we get home, he has had enough, lets it out, and is typically uncontrollable for several hours following worship.

As a father, your first instinct is to be with your family and care for them. You want to put pressure on your son in the pew, which will help him feel better. As a pastor and father, I fight the urge weekly to leave the pulpit and be with my family when I know they need me. I cannot always do that, and it pains me.

So, I give in to things that can help my family stay calm in worship. I let my youngest run up to me during worship. Admittedly, I find it cute to watch him run up towards me during the opening hymn. It is like his very own processional. We play it off as he has not seen me much that morning since I leave early to prepare the sanctuary for worship. In reality, it is the only way we can think of to help my wife maintain a sense of calm for Noah when he is overwhelmed. Most of the time, when our youngest comes up for worship, it is because Noah is on the verge of being on edge, and Abbi needs help from me. 

That takes us to this past Sunday. Noah was on edge when he arrived to worship. We probably should have kept them home and had them worship online (a great blessing for special needs families). We decided he needed the routine. The Fourth of July weekend had already been hard on him. Our neighborhood is a collection of fireworks exhibitions for weeks at a time. It is another nail on the chalkboard experience for him. 

During worship, I am getting texts from my wife (on my Apple Watch) that Noah was on edge and she needed help. I agreed to let our youngest come up to me and let him stay with me during the opening parts of worship. Our hope was once that Noah would gain a sense of calm after the children’s message.

That did not happen. Noah continued to show signs of being overwhelmed and gave us his classic sign to alert us to this fact. He laid on the floor at the altar. He attempted to find any sense of pressure to calm himself down. I am watching Noah as I am trying to give the children’s message. I know he needs me. 

I wrapped it up as quickly to get him out. He would not move. Noah had had enough. At this point, worship did not matter to me (God will understand). Noah’s needs took priority. I helped him up and whispered if he needed a hug, which he did. I gave him one and told him he would be okay moving forward. I think I was saying that to the two of us.

Noah would go with the other children for the remainder of worship and come back for communion. He was on edge and at the point of needing to leave. As I am blessing the elements, serving the bread, and saying, “The body of Christ broken for you,” my eyes are transfixed on my family and wanting to care for them … again.

Again, I dealt with things as needed in worship to care for him and his needs. There was a small wave to my family to come up and get communion early. There was the letting him stand beside me to help serve. I hoped if he stood with me, he would not feel as constrained than if he went back to the pew. I turned it into a teaching moment to help him understand my pastoral role. I let him help me put the remaining elements on the altar. Later, he would walk out with me as I delivered the benediction (which created a beautiful video).

I was entirely exhausted by the end of worship, and so was Noah as was the rest of my family.

What I shared is an extreme example of what worship is like for us each week as a special needs family where one happens to be the pastor. It does not always happen this way, but almost every week, we share signals and other forms of communication to help care for Noah and his needs as we worship.

I am thankful for the day and worship, but I hope others see the lengths we go through each week just to come to worship. It is not easy even for a pastoral family to be present each week with a special needs child. Worship is often an exhausting experience. 

So, yes, I stopped worship on Sunday to care for my family. You may not have noticed. I can promise you it was needed and holy.

I probably will do it again.