I wrote to you about 5 or 6 years ago for some advice on how to help my severely autistic son during worship. Today he is 8 years old and going to worship never got easier but in fact got extremely hard, to the point where going was nothing but a major distraction and would cause quite a disturbance. It was an absolute dread to even think about going, let alone focus on what was being said. The last time we tried to sit during worship, he scratched me to the point of me bleeding, and I had to take him and leave the building in tears.
We are a military family and have been stationed away from our family. We made a few Christian friends when we first moved here when our son was still young and still relatively easy to handle. Now that he is bigger, stronger, and louder every person in our life has disappeared. The church rarely invited us to activities, and we were okay with that because I do have a very understanding heart. People are embarrassed, etc.
We decided to worship and take communion at home in order to worship at all. As soon as we started doing this our only two friends who talked to us in the church withdrew from us completely without warning. These two people were important to us, and we loved and adored them dearly. It has been almost two years since we have worshipped with other Christians. I know we are not supposed to rely on our feelings but we have never been or felt closer to God than my family is now.
We are not like most other families with children on the spectrum. We have no family for thousands of miles and no friends who we can trust to handle and care for a child like ours while we go to worship, so that is out of the question. We plan on trying to worship with other Christian's again one day. We hope our son will become calmer with age and with more therapy be able to self-regulate better.
Do you believe it was right to be withdrawn from? For us, it feels like being kicked while you're already down. There is nothing more in this world that we want than to be a normal family, who can go to worship and be involved with the church. I know from experience that asking a person who does not have a child on the spectrum is kind of a long shot at getting an understanding viewpoint, so it is okay if you don't have any good advice. But honestly, would you withdraw from us without warning?
I saw an ad a few months ago that a denominational church near here built a "sensory room" (not a nursery) for families who have children with severe autism. They said it was soundproof and had a see-through mirror where we could watch and listen to the sermon but not be a disturbance to others. I hope this is something that more churches will start doing with the ever-increasing occurrence of autism. I know that is tough though because most churches don't have a lot of money. I just wish the one that had it available here was not denominational or we would be going back.
Thank you so much for your time
I have helped families with autistic children, though none of my immediate family has autism. As was discussed years ago, autism describes a wide variety of symptoms, so what works with one family might not work with another. Also, please keep in mind that I can't answer for another congregation. I don't know all that went on or was said. It is not proper for me to draw conclusions with only a portion of the story that comes from one person's point of view.
Clearly, the brethren where you currently live don't understand mental illnesses well enough to know how to handle the problems. I don't know what solutions were suggested or tried -- if any were.
- A monitor in a classroom, away from the central bustle of the congregation, would be one solution. There you could watch the services and the Lord's Supper could be brought to you.
- If one of you are usually able to handle your son, then a less ideal solution would be for one to attend worship while the other stayed home, rotating so you both can enjoy some time with the congregation.
- A livestream of the services would at least allow you to listen to lessons and sing with the congregation. This is something we do for those who are shut-in due to health.
I'm sure there are other possible solutions that could be worked out with brethren who love each other. If the expense is a problem, then offering to pay for all or a part of the accommodations is a way to get a discussion going. The route you and your husband took does keep your son calm by being in a familiar environment, but in reality, you are forming your own congregation. Yet, at the same time, it is not a congregation because it doesn't allow others to join you, it doesn't work to spread the gospel to other people, etc. Instead, I take it that you exist in isolation from others, which is why you are so lonely.
While you complain about the congregation withdrawing from you, isn't that what you have done to the congregation? Please understand that I'm not trying to take sides. I'm merely pointing out that effectively, whichever way you look at it, there has been a severing of the fellowship when you and your husband chose to worship at home.
My advice is to talk with the brethren in your area to ask for help in coming up with a workable solution to the problem. If no solution is found, then reach out to brethren in other areas to see what others have done in similar situations.
Comment from a Fellow Preacher:
One of our children has autism (she is 4 now). Getting her to sit through church services has been a battle (but then again, almost every aspect of life has felt that way). We've felt like we've had to re-learn parenting from scratch.
Leaving church hasn't been an option for us (obviously). We simply made the decision to have our kids present as much as we possibly can (i.e. unless someone is actually sick). Giving her sensory distractions has been helpful during services. There's been talk in the congregation of modifying the nursery to be more sensory friendly (but we haven't seen that as necessary yet). My wife has had to bear a large part of the burden of handling her during worship, and we've had many a service where she has not heard the sermon because of trying to take our daughter out of the auditorium during her "meltdowns."
We have good Sundays and bad Sundays. Lately, the goods have started to outnumber the bads. Consistency has been a huge key to our progress. Our daughter thrives on routine. Changing the routine means having to fight a battle. Once the routine is fixed and she knows what the "rules" are, she will sit for it (within reason). But teaching her the rules and maintaining them consistently is the challenge, and it will test your limits. (*Every* case of autism is unique and presents differently. But I think our experience has given me hope.)
It's absolutely not okay for others to hold themselves aloof or snub for invites over this. We've made an effort to invite people to things in our home. We've tried with all of our might to avoid letting this disrupt our social interactions with the members of the congregation. And the brethren here have been super helpful / understanding, so that's another plus.
If someone in our church felt the need to start worshiping "at home" because of frustrations like this, I wouldn't withdraw from them. I'd go to them and try to win them back. "What can I do to help?" "How can we accommodate your child's needs?" The local church is supposed to be a family that encourages, edifies, and builds up one another. This is an opportunity to help a family that is obviously afflicted. "Withdrawing" from them in this situation seems (at least to me), like a way of kicking someone when they're down.