Being autistic, I regularly receive messages from families who are literally warring their way through the issues of church attendance and autism. Many of those families finally just give up and quit going to church all together. They're tired - really tired. I understand their exhaustion and I can sympathize with the things that have driven them to eventually cave in to quitting.
The things that this blogger/mother references are very real for those of us who live life on the spectrum, and it would seem that these church challenges are pretty stinkin' pandemic. It grieves my heart. (By the way - before any of you jump my ecclesiastical jugular, let me say that I don't agree with everything that the blogger says in her post, but I do understand the struggles her family faces. Please don't throw the baby out with the bathwater for perhaps through her post you will begin to understand as well.)
Our son Josh has made great strides where worship is concerned, even in the past few months. But, church is still terribly trying for him - it's terribly trying even in spite of the fact that we have a very low sensory stressing service at Redeemer. Many of the issues raised and most of the examples given in the article have been our reality every single week since our son was 2 1/2 years old - many years before we knew autism to be the driving force behind his struggle (as well as behind my own).
As a child, the church hour was the "hell" hour for me as well. (Sorry if you're offended, there truly is no better term.)
As I grew older and was able to (supposedly) sit with friends in the service, I would instead roam the halls during the service - hiding in bathrooms and classrooms to avoid having to sit through an event that I sincerely wanted to be a part of, but honestly found myself internally devastated by. I did the same during Sunday School, spending far too many hours crouched on a toilet seat hiding from any SS truant officers who might be looking for vagrants such as I.
Later, in high school, as I was hired to be a church musician, I found a "crutch" that enabled me to make it through a service. The organ and the piano served as a bizarre anchor that enabled me to push through the pain and stay moored in the manic-ness of the moment (how that all fleshed out is probably a post all in itself).
After Phillip and I married and I was no longer hiding behind an instrument in church, the struggles began again. I spent several years in literal physical pain and anxious laden torture as I sought to endure the services at our congregations in Alabama. The sounds, the breathing of those around me, the vibration of pens and pencils taking notes, the clicking and clomping of shoes shuffling in the choir loft - they were often internally undoing!
During that season (thanks to some dear friends who cared and came alongside us), I learned some Biblical coping methods that have helped me greatly in surviving church. The truth is I still "cope" my way through the service and through all of the meet and greet that accompanies it. (I know that shocks some of you who view me as such an extrovert. God has been gracious to me, and my ability to engage with you is His gift and His mercy.)
As an individual who has struggled (and still does struggle) personally with the things mentioned in this mother's blog post, and as a mom myself who has striven for over a decade to help lead my precious son through the minefield that is church, I must tell you: you truly cannot fathom the depth of the challenge nor the depth of the internal physical and emotional angst which comes from it. As I shared with some friends yesterday: you can't fully fathom it, but you can at least gain some understanding and perspective about it thanks to articles like the one listed above.
Our own church loves my son, has learned much about autism, and accepts him as he is - even when he's standing in the foyer door during the service stimming and pacing and gesticulating like a mad man. Our understanding church is now our norm for Sunday mornings and I'm thankful for the firm foundation it is and for the stability it offers as Phillip and I continue to parent Josh through the autistic awfulness of congregational worship and congregational living.
However, as providence has it, some Sundays we are on the road and end up experiencing the Pandora's box of pain that many church environments present to the autistic child. Not too terribly long ago we were visiting friends at another church and after helping secure a seemingly safe seat for Josh the organ blasted the first sounds of the opening hymn.
It was loud.
It was cacophonous.
It sent my son catatonic - literally.
He became rigidly fetal and Phillip had to lift him and carry him out of the service, stiff as a statue (to quite a few dropped jaws and gawking gazes - now, admittedly it was indeed a sight to behold!). Getting Josh into the lobby we decided that I would stay with him. I sat down by his side, holding him when appropriate, comforting him as able, and seeking to soothe his neurological nightmare while Phillip returned to sit with Elizabeth for the remainder of the service (a rare treat for her).
In the lobby there were several other adults watching as everything played out - watching and whispering, pondering and pointing but none extended a helping hand or even an encouraging word as I sat there with my suffering son.
Josh was hitting his head, rolling on the floor, and moaning all kinds of mantras. I was wrestling with him to keep him from ramming his head and body into the doors that entered the sanctuary - an act that I believe was spawned from his desire to somehow retaliate against the place that was causing him such pain. As I, a small woman, sat physically fighting with my growing son, people (including the deacons on duty) stared at us, but they didn't seek to assist us. Josh finally stopped flailing after about 30 minutes, but it was over 2 hours before he had settled back in to his normal unstressed self. (Welcome to our worship!)
Several days later I heard from several friends at that church about the incident. Some people had asked what the "problem" was with my son because he was "acting really weird" in the lobby and I seemed ok to just let him roll around on the floor "pitching a fit." There were questions about our parenting ("since Phillip is a pastor") and there were micro-lectures on the problems of spoiled children in modern society.
Just this past July we worshiped at a new church while on vacation. Josh slinked in and our entire family ran our normal interference pattern to help him make it to the pew as unscathed as possible. We made it to our seats, and he settled in, nestling near Phillip (a special thing for a pastor's child, because daddy is usually up front rather than with his family).
But then "it" happened...
..."it" being that horrible moment of greeting that is a part of church life, but that can be as neurological napalm to an autistic.
Suddenly, before we could execute a "block", a well-meaning elderly gentleman got to Josh.
Josh hung his head and tried to pull away but the sincere saint was relentless. He tried to talk to Josh and Josh simply turned away. The man said, "Now son, that's no way to act. I'm sure your parents have taught you better than that!" He then began to shake Josh's hand (Josh's arm and entire body bouncing along) with great gusto, exclaiming "Let me show you how to shake a hand, young man." Phillip was finally able to intervene and told the gentleman that our son has autism. A puzzled look crossed his face and as he began to walk away he said, "You know, you've got to teach children to do the right thing without giving them excuses."
I don't doubt he was trying to help - but he didn't help.
Yes, we do indeed have to teach our children to do the right thing, without giving them excuses. That's one of the reasons that the Sealys haven't given up on church - it's not because Phillip is a pastor - it's because we are Christians and the worship of our glorious God, of His redeeming Son, and of His abiding Spirit is the most important thing we do each week.
Oh, how we are trying desperately to teach Josh to do the right thing - but with an understanding of the wonderfully weak frame that our good God has wisely and sovereignly chosen to bestow upon him - and upon me as his autistic mom.
It is a hard (HARD) balance to strike - doing the right thing, yet acknowledging the realities that make the right thing a greater challenge to execute.
Phillip and I regularly remind Josh (even as I regularly remind myself) that autism is no excuse for sin, and then we point him (as we point one another) to the Savior of sinners who alone can truly enable us to press through and prosper and obey, even along the most painful paths.
We fail regularly. Sometimes we push too hard. Sometimes we give up too soon and make the very excuses that our greatest critics accuse us of. But when we fail, we find the grace of the God whom we fight to worship proves to prevail! It is by the grace of that great God - which has been granted to us by His sacrificing Son, and applied to us by His sanctifying Spirit - that we keep going and that we keep fighting to find the way to make the Kingdom of God more accessible for the disabled of God.
As you read my weak words and as you think on this dear mom's linked blog, I'd ask you to pause and try to ponder our weekly reality. As you do so, may I invite you to attend and encourage you to make others aware of a wonderful conference coming up in November: "The Accessible Kingdom Conference" (www.accessiblekingdom.org). It is sponsored by Joni & Friends and by Mission to North America's Special Needs Ministry.
I'll be there in concert, leading worship, and presenting a workshop on autism and faith. Emily Colson (Chuck Colson's daughter and the mother of Max who lives with autism) and Stephanie Hubach (my good friend and the mother of Tim who lives with Down's Syndrome) will be the keynote speakers. Plus, there will be over 40 additional workshops (including Barb Newman) on a variety of church and family related special needs topics.
It promises to be an outstanding event, addressing many of the aforementioned issues (as well as so many others). It's perfect for pastors, parents, and parishioners - anyone who cares about those special needs saints who are struggling to survive and needing a little help to thrive.
Thank you to those of you who've loved the Sealys well in our journey! May we all seek to love one another better as we seek to soothe the hurt that often happens in the house of our Holy God!
By grace, only and always by grace,
Lori
You might also enjoy these other posts on the blog about life with autism:
- Cliff Note Confessions of a High Functioning Autistic
- Communicating With Carly About Autism, God, & the Struggle to Touch the Intangible
- Interviewing Autism: A Christian Perspective
Oh my word. I've been one of those people in the lobby. A friend told me about this post. We were just talking about this problem becuase of a family in our church that is having ahard time with their son in our church service. He throws hymn books and bulletins and i watch his parents trying to figureout what to do with him. I've pointed a finger at them. I knew that their son had autism but had never really thought threw what that means. My friend and I have already been getting convicted about our attitudes. Your post has haelped. I'll try to go and talk to the mom. I'll aslo tell her I'm sorry for how I've not been a friend to them. Thank you.
ReplyDeleteTerri - your response to this article encourages my heart so very much. Please know that many have been "one of those people in the lobby." Please know that God is so gracious and repeatedly redeems that which we've botched up. :) Thanks for your desire to go to that mom and make things right. I pray your humility will be used to encourage her, even as it is encouraging me.
DeleteThank you, Lori. This post, the one you linked, and that conference are 3 very needful things. I have good friends with two children on the spectrum. They finally quit going to church about 2 years ago because of the reasons addressed in these articles. In church they were met with stares and misunderstandings, particularly by our church leadership (IMHO). They were told to discipline more. Since they've left the church they've been met with more misunderstanding, most recently being removed from the church roles because they broke their membership vows. Perhaps they did, but they didn't want to. I've talked with them a lot about this. They wanted to be in church, but got worn out watching their children fall apart. Most assume their kids are spoiler and out of control brats. I am planning to forward both articles on to our leadership. Sadly, not a single pastor or elder followed up with them, other than to tell them they needed to come to church and then to send them their letter of removal from membership. I continue to try to come alongside them, our whole family does, but not many others are. They spend every Sunday watching webcasts now because it's all they know to do. It's not what they want to do and they've said they feel very guilty. But trying to do it alone hasn't helped them be able to do it at all. Thank you for sharing this. There is so much in here that every church member, officer, and pastor should take the time to read. I hope many will.
ReplyDeleteHi. I know so many families like the friends you reference. It seems a truly pandemic problem. I do hope your church leadership will take the time to read, pray, and pursue acting as loving shepherds to this family and any others that they have an opportunity to. Thanks for being there for your friends. I pray you'll be a balm to them amidst the bludgeoning that is autism!
DeleteHello Lori. I am a single mom from the UK and have a daughter who is ASD. We stopped attending church several years ago because of the difficulties and because I really didn't have anyone to help me with them. I had a large number of my fellows bully me about my bad parenting and my bad girl but none offered any help or sympathy or even asked me any questions about what was happening. I'm glad you have a supportive group of people and I do hope that your article is read by many and sheds light on this problem. I've come close to trying other churches several times but always get a bit flighty and afraid and we end up staying home. God bless.
ReplyDeleteHi Roxanne. I'm so sorry to hear of what you've experienced. Truly this problem crosses international lines. What a tragedy. Thankfully, our Savior crosses international lines. How I pray He will "redeem the years the locusts have eaten". Over and over I talk with families who are dealing with the "bad parenting" and "bad girl" labels. I'm sorry - truly I am. If there's anything I can do to help and to encourage you in your journey, please let me know. As of this moment I am pausing to pray for you and yours. Thanks for writing.
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