When Church Hurts

She came up to me, our first Sunday there, and said, “If your son needs to be in a more quiet place, he is welcome to hang out with me in the lobby. I have the church’s WiFi pass code and he can use it if he has a device. I know it must be hard not to go into the service with the your husband, so this way, you guys can have the hour together.”

I was speechless. And grateful. And amazed.

No one tells you that church and sensory issues are like oil and water. They don’t mention it in OT, or when you get the diagnosis, or even in the books that talk about what to expect.

Yet every mom I know that has a unique little one like mine, has experienced it. Many of you have written me and asked what we do about church. I know why you ask. It’s a loaded question. It’s a question that I am sad to say I still have no real answer to. It’s a question that we have wrestled with – for years.

When Church Hurts - church and families with special needs children #autism #adhd #SPD #specialneeds #sundayschool

For my son, the sensory experience of going to church is something similar to torture (I wish I was exaggerating to make a point).

He enters the crowded lobby with wall to wall people, everyone talking at the same time, various smells of babies and coffee and muffins and perfume, getting bumped here and there because it’s not time for the service to start, people  still talking and welcoming and trying to hang on to their children as they run for the donuts and other children .

When it is time to start, he has the choice to attend with us, where the worship music that everyone else seems to enjoy is overwhelmingly loud and painful, the lighting is weird and makes his eyes hard to focus, and the pastor is talking into a microphone, which blurs the words into a series of loud or louder sounds that he can’t make out. It’s all just noise, painful and overstimulating.  But it is better than the Sunday school classroom, with even louder kids, confusing social situations, worse smells, a teacher that keeps asking him to read aloud, answer questions, engage in crafts. He can hear the other kid’s pencils and crayons as they move across the worksheet – the sound of a writing instrument on paper is more searing than the loudest noise all morning. It’s like a drilling noise, in his ear, constant and overwhelming.

No matter what he chooses, when church is over, he is exhausted and anxious. He makes his way back through the crowded lobby and the smells and the people touching him and the kids playing. Then he hears me say, “We should go out to lunch.” Knowing this means more smells, clanging kitchen noises, the constant buzz of conversations at other tables, and the horribly loud music they play in the background. He panics. The meltdown begins.

This. Every. Single. Sunday.

I wish I knew five years ago. I wish I realized the extent of it even six months ago.

It saddens me to say that for years I forced – literally dragged my son out the door on Sunday mornings. I thought I was doing the right thing. I love church. I thought he would too, eventually.

It makes me a little sick to think that I worried more about what other people thought about us missing a Sunday, or his behavior at church on a Sunday, than the pain he was feeling. I was concerned with others, more than his precious heart.

It angers me that when we finally made the decision to divide and conquer, with one of us staying home each Sunday, or worse yet, when we both started staying home on Sunday mornings in an effort to figure out what God would have us do, we were met with judgement and accusation.

And, it delights me that when we took the painful part of learning about Jesus out of the conversation, his heart began soften. He began to not be so fearful and purposefully removed from our conversations about God, and instead relaxed, learning, listening, and even starting to engage.

When Church Hurts

I know we are not alone in making this type of decision. I know of one family that conducts “family church” at home together, every Sunday. They study the Bible and sing hymns and pray. It is the best they can do.

I know of another mother that, one Sunday, was asked to keep her child out of children’s church – because it was disrupting the other children and making it difficult for the teacher. This momma went home and cried all Sunday afternoon.

Kristine Barnett, in her book The Spark: A Mother’s Story of Nurturing, Genius, and Autism, shares that people at church questioned her parenting ability and thought her son was spoiled. She overheard a joke being made about him. One Sunday, she picked him up, walked out in the middle of the service, and didn’t come back to church for years.

Temple Grandin, a woman with high functioning autism, also addresses this in her book, The Way I See It, . She talks about going to church as a child in the 1950’s when there was predominately organ music. She says she does not think she would ever be able to attend a modern church service now, with all the loud music and microphones.

We are not unusual, at least in the world of sensory processing disorder. But it feels like we are.

 

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For now, we are taking each Sunday as it comes. We know another mom in a similar situation who is willing to trade-off with us – she goes to church one Sunday and we keep her son. Then we switch and she takes ours so we can attend. We also have the very gracious offer I shared from the gal in the lobby. We may take her up on it. She doesn’t know my son, but her heart is so genuine and her desire to serve so obvious, I think my son would love her.

For those of you who do not make this choice every Sunday, please have grace for those who do. Anyone I have spoken with in this situation, does not make these decisions lightly. This is not a willful disregard for the Bible or the church. We love the church and genuinely want to serve and be a part of it. If you have an idea that you think may help, offer it. Please. We need the church. We need the body of Christ. We need our children to have a place at the table.

For those of you who share our circumstances, I want to encourage you to make the decision that you know to be right for your family. Seek counsel from wise friends, who understand your situation. Whatever you decide does not have to be permanent. Your child and your family are uniquely gifted to you by God. You may need a unique approach in this season, in order to serve and glorify Him.

He called a little child and had him stand among them.  And he said: “I tell you the truth, unless you change and become like little children, you will never enter the kingdom of heaven.  Therefore, whoever humbles himself like this child is the greatest in the kingdom of heaven. And whoever welcomes a little child like this in my name welcomes me.” Matthew 18:2-6

Jesus
Image from our boys’ Jesus Storybook Bible. (affiliate link)

 

For more:

What Do We Do When Church Hurts

When Christian Parenting Isn’t Christian

Depression, Grief and the Church


 

78 thoughts on “When Church Hurts

  1. The church I go to is one that has predominantly organ music, and every once in a while piano music. So I didn’t really have much of a problem going to church growing up. And the classes were always really quiet. The teacher would just talk to us and show us pictures and stories. I’ve visited other churches though that are like what you described and they always seemed strange to me. People all standing close together and moving around and videos all over the walls and loud music and microphones. I didn’t understand why that was appealing to people. I always gravitate towards the back wall away from the crowds and I think the kids I took kind of wondered if I didn’t like the church. It wasn’t that I didn’t like it- it was just too much to take in.
    The one thing that I can’t stand at my church now though is this bell they have to let people know that class is almost over. I never had that growing up and I don’t understand why they have it at all. It is one of the worst sounds in the world and I wish it didn’t exist.

    1. I can imagine my son would feel exactly the same way about the bell. I can’t tell you how helpful your perspective is. Thank you so, so much for sharing it.
      Love,
      Shawna

  2. There is a church near us that has a separate service for kids with all sorts of issues and disabilities, including sensory. It’s in a building all its own, with rooms for different situations. It’s a WONDERFUL program…of course, not all churches are big enough to have a separate building, but perhaps something could be done. Something SOMEONE has to start…

  3. As a pastor, I have to admit I hadn’t thought about a lot of these issues. How sad for your son. I’m so happy you’ve found some solutions instead of giving up on church altogether. I will be mulling this over to present to my church’s staff for us to consider…

    1. I have a cousin who does not go to church because of daughters autism so I have thought about this issue a lot. I just am not sure how a small-med size church with untrained volunteer teachers can address these issues. I would love to hear any ideas we could use

      1. I think it matters that you are thinking about it. I can’t speak for other families, but it has never been my expectation that the church change to accommodate my son. Most mommas I know just want the grace to make the best decision they can each Sunday, and know that they are loved by their church community. We attend our church irregularly now, but when we are there, we feel acceptance and no judgement at all because of our lack – only encouragement at what we are able to do right now.

  4. This, oh this. We go, taking my Little Man’s headphones and tablet with us. Our church is very used to seeing him this way, and we are working with our Children’s Ministry to make Sunday School more accommodating and comfortable for our different kiddos. My husband doesn’t often go to church by personal choice, so there are the days when I know we will all be better off leaving Little Man home with him.

  5. My son is almost 8. Until the last couple of months my husband was pastor of our church. Thankfully it was a small church. Everyone understood our need to sit in the back with his ear plugs, and still sometimes leave with my son hysterically crying. The search for a new church is so stressful. It is sad to say my husband’s preaching appointments are keeping us in church. The occasions we couldn’t make up our mind which church to visit and stayed home have been so much more relaxed and enjoyable. I totally understand the struggle.

  6. Places of worship need to be inclusive. We attend synagogue on Saturdays and there are similar issues. We have a room designated as a”quiet room” where children can spend time when they are overstimulated. We also hold annually a special needs awareness Shabbat, where speakers educate on the needs of all children and how to include them. Our religious school has a special ed teacher who visits classrooms, observes children and supports the teachers. Your son is who he is, it’s the church that needs to make modifications. Good luck!

  7. I am probably one of the millions of undiagnosed women with Aspergers in the Midwest … I was a child in the 50’s … church was a nightmare of sensory overload and unanswered questions for me that never made sense to me … as a young adult in the 70’s … I decided that church must be a “social occasion for everyone but me” and that it has nothing to do with God or Jesus because very few people I met at church or elsewhere lived or practiced what the Bible teaches from my social outsiders viewpoint and it appeared to be much more about “appearances” – clothes, cars & one upmanship of jobs & family.

    As a 60+ Grandmother of a diagnosed AS teen-ager who is nearly an adult now … I still have a very firm belief in God and “living” what the Bible teaches/taught from my reading and understanding of the content – be a good person, practice kindness & tolerance plus do good deeds etc … but the social experience of church still leaves me on the outside looking thru the window feeling excluded from a high school clique who wants to enforce “their way” on everyone around them even when it is not possible for people like me.

    1. Hi, I was thinking that your experience sounds a lot like the experience that Jesus had in His day with the Pharisees! They wanted Him to be like them, but He was not interested in their outward appearances or actions. Romans 3:20 says “Therefore by the deeds of the law” (works) “no flesh will be justified in His sight..” But the good news is in Rom. 3: 23-24 “for all have sinned and fall short of the glory of God, being justified freely by His grace through the redemption that is in Christ Jesus..” So then Jesus says “If anyone desires to come after Me, let him deny himself, and take up his cross daily, and follow Me.” (Luke 9:23) And His great promise is “I am the good shepherd; and I know My sheep, and am known by My own.” (Jn. 10:14) I hope that you also know the joy of being fully loved and fully accepted in Christ because of His sacrifice for us. When we draw close to Him, He heals our hurts. Take care, Faith

  8. Thank you for sharing this. Our sensory kid has had a rough time at church but it is getting better. Understanding child care workers and being a gracious and gentle advocate for your child, with ideas on what can help him, goes a long way.

  9. I had no idea about this kind of thing; it wasn’t even on my radar at all. Thank you so much for sharing! Now I can be on the lookout for families who are struggling with similar circumstances. God bless you as you seek His wisdom and continue to pursue Him. Thanks again!

  10. You don’t have to go inside to have church. Find a quiet special place…take a walk…sit by a river or a pond…can be different or the same each week and go by whatever works for your family. Bring your bible or some scripture and read together…or just listen. God speaks in many ways! And that’s why we go to church…for the Word.

  11. Please check out the “Rhythms of Grace” approach – if your church doesn’t have it, perhaps you can get it going. I haven’t experienced it myself, but from what I hear of it (as an Episcopal priest), and from friends who have special-needs children, it offers a different kind of worship for children and parents to enjoy together.

  12. As a mother of 4 and with one of them having sensory issues, plus being the Children and Family Ministries Director this is a subject near and dear to my heart. I love the idea of the quiet room and will be looking into tarting one at our church as we have several who are too old for Children’s Church or it is too over stimulating that this would benefit. Thanks for sharing!

    1. Thank you for your heart to serve! You must be so busy with your little ones and ministry – I am grateful for your kind words.
      Love,
      Shawna

  13. My family attends a small church that has fellowship lunch every Sabbath. It is hard for our son to sit through a sermon, so he “serves” his church family by helping out in the kitchen. We hear the service over a speaker. He loves going to church because he is included and has a special role to fill

  14. As a pastor with a special needs child, I know how hard it is to find a comfortable place for my child to worship and the unsuspecting people who see her talk in the middle of church and are judgmental of her. I value those who see outside their box and are able to view my daughter as valuable and unique, and someone who God loves.

  15. When we adopted our son at the age of 6. He had never been to church because of his behaviors. I was determined to make this work. My husband and I took turn in Sunday school and children church. We were there and try to help him get thru it. About a year after doing this we had a huge break though. While in the service I told him to be quiet because the pastor was talking. He stood up look around to see him but could not see him. I realized this whole time he didn’t understand why we’re we were frustrate taking him out. As a family we started to sit in the balcony where he could see the pastor. Things start improving now he is 19, he sit alone and is total independent. I tell this to encourage parent to study your kids,find way you can help the situation. Yes the church should help,but if they don’t you have to do it. Just like the person the post find solution, trade,take turns. Yes the church should help carry some of the burden but they don’t get it. Believe me I know exhaustion of raising 4special need kid. They are now adults that are high functioning and are doing the best they can.

  16. Shawna,
    You might look for a congregation that uses Godly Play for children’s Sunday School. As a pastor who has served congregations over 4,000 and now in a congregation of about 100, I can tell you that smaller churches have more ability to meet the needs of individuals than larger churches. Worship at home is worship. Church family is the Body of Christ in the world, though. Your church family is there to support and care for you and vice versa when you struggle in life or in faith. You also might look for a house church where your child would be more comfortable.

    God be with you,
    Rebecca

  17. My son doesn’t seem to be bothered at church. Sometimes, it even gets too loud for me. Maybe a different church would be better. Maybe one that is larger and has an area for you to go. Or maybe one that is smaller, so that there isn’t so many people. Maybe a more traditional type verses one that plays louder, more current music. Or just maybe you take a break. Our church offers Wednesday night classes and worship service. So worship is smaller, then. And the older kids are more broken up (I teach a class of 2nd grade girls and we have around 6 each week that are regulars but not usually more than 12.
    Find what works for you.

  18. I am on the autism spectrum disorder. We attended the First Presbyterian Church in Niles, OH in the summer of 1959 when I was a little kid, but my mom was asked not to send me to children’s church after a few weeks of attending it because I was too disruptive to other children and made it too hard on the teacher. Then our next door neighbor invited us to the First Baptist Church in Niles, OH and discovered that the people there were much friendlier and more able to handle an autistic kid than those of the First Presbyterian Church. And besides the First Baptist Church was more Spirit-filled. So we switched to the First Baptist Church and stuck with it for a long time. Unfortunately, a troublemaker started a fight at the First Baptist Church over doctrine in the 1960s and caused this church to split.

    1. Thank you so much for sharing your experience. It is so helpful to moms like me trying to help our kids.
      Praying for you this morning.
      Love,
      Shawna

  19. Hi Shawna,

    Thanks for this post and for sharing some of your journey. I am autistic as is my son. Church has been and ever is a challenge. I’ve shared your blog on my FaceBook page, and rather than writing to you a fresh message, I thought I’d “cut and paste” my prelude to your post. You’re not alone in this struggle and at this very moment I am pausing to pray for you guys! I hope you’ll look into “The Accessible Kingdom Conference” that I’ll reference at the end of my pasted comment.

    “A good friend (who personally knows our own family’s deep battle to survive Sunday morning church amidst the angst of autism) posted this article yesterday. I commented on it, and in so doing, received a substantial handful of private messages on the issue. I’ve been reminded that the things this blogger/mother references are pretty stinkin’ pandemic in Christ’s church. It grieves my heart.
    While Josh has made great strides even in the past year, church is still terribly trying for him (and we have a very low sensory stressing service). Many of the issues raised in this 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 between his struggle (and my own).

    As a child, the church hour was the “hell” hour for me as well. 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. Later, as I was hired as 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 (how that fleshed out is 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, and I spent several years in literal physical pain and anxious laden torture as I sought to endure the services at our congregations in Alabama. During that season (thanks to some dear friends who came alongside us), I learned some Biblical coping methods that have helped me greatly in surviving church – 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 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 of this blog post, and as a mom who has striven for over a decade to help lead my precious son through the minefield of 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 can come 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 below.

    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 warring within. 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 living.

    However, some Sundays we are one 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 – admittedly it was indeed a sight to behold!). Getting Josh into the lobby we decided that I would stay with him this time. I sat down with him, holding him and comforting him, seeking to soothe his neurological nightmare while Phillip returned to sit with Elizabeth for the remainder of the service.

    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.

    Several days later I heard from our friends at that church. Some people had come up to one of them later in the week and 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.” My friend was questioned about our parenting (“since Phillip is a pastor”) and was given a micro-lecture on the problems of spoiled children in modern society.

    Just this past July we worshipped at a new church on vacation. Josh slinked in and our entire family (E included) ran our normal interference pattern to help him make it to the pew unscathed. We made it, and he settled in, nestling into Phillip (a rare treat for a pastor’s child, because dad is usually up front rather than with his family). But then “it” happened…

    …”it” being that horrible greeting time that so many love but that is 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 (arm and entire body as well) 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 making excuses.”

    I don’t doubt he was trying to help – but he didn’t help. Yes, we do have to teach our children to do the right thing, without making 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 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. 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.

    We 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, 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 Opdahl 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 on a variety of church related special needs topics.

    It promises to be an outstanding event, addressing many of the aforementioned issues (as well as so many others) for pastors, parents, and parishoners who care for those special needs saints who are struggling to survive.

    Thank you to those of you who’ve loved us well in our journey! May we all seek to love one another better, as we seek soothe the hurt that often happens in the house of our Holy God!

    By grace,
    Lori Sealy

    1. Oh my goodness, Lori – this is amazing. Thank you so much for sharing. Your personal experiences and perspective as a momma is so helpful for me and other mom’s to gain more insight into how to deal with all of this. I love your heart to share and to keep trying, never giving up hope.
      Thank you so much for your comments and the link to the conference. Praying for you and yours this morning.
      Love,
      Shawna

  20. I have two young adult sons with autism (and one of them also has cerebral palsy). They are 20 and 23 years old, respectively. When they were first diagnosed, autism was not seen as a sensory disorder, but just a behavioral disorder. Going to church was a living nightmare, and we were absent more than we were present; for many years sitting out in the hallway or even going home before the Sacrament service was over. When I finally realized that my sons lacked the sensory filters that the rest of us have, hearing everything, seeing everything, feeling everything; I was so relieved that I cried. I could finally see what was distressing them so much–and could finally do something about it. The out-of-tune piano was one of the things that triggered meltdowns, the noise of the children’s Sunday school did too, and the innumerable people sitting in front of the back row where we sat so we could take the boys out if they got upset, were finally seen from my boys’ point of view.

    And then, one Sunday, shortly after we moved to where we currently live, the bishopric of my ward asked us what they could do to help.

    It’s hard to ask for help, but when they offered, I was able to explain what the problems were, and I gratefully accepted their offer. They called two of the sisters who we are friends with and asked them to teach a separate Sunday school class just for my boys, which wasn’t so noisy and over-stimulating, until they matured enough to join in with the teenage and, eventually, the adult Sunday school lessons, when they turned 18. We were invited to sit at the front of the chapel, right in front of the podium, so the boys could see the speaker, and weren’t overwhelmed with the number of people filling the chapel. If things still got to be too much, it was okay for my boys to lay down on the bench and cover their heads with a blanket. And if we did have to leave the chapel, no one looked at us askance, but with smiles and love and understanding in their faces.

    The entire congregation supported us and our boys, and it was such a blessing! We and their dedicated Sunday school teachers patiently taught them to sit quietly when the Sacrament was passed, and to try to listen to the speakers. Over the years, they learned to love Christ and His Gospel, and my younger autistic son eventually even came to be able to read out scripture verses aloud when asked to do so in the adult Sunday school.

    They still have bad days, but they also know of the places in the chapel building where they can go sit apart from the rest of the people milling around after services, and calm themselves down. My autistic/CP son’s favorite place is a sofa that faces a beautiful picture of Jesus. My other son has his own special spot too. When they were little and melted down at church, I used to be ashamed and embarrassed. But through the Christian love of our friends who came to understand our children’s special needs and their desire to help, we have been able to bring our boys to church every Sunday, and to attend fellowship events such as potlucks with them. If a meltdown happens, it is simply accepted, and everyone finds a way to help them through it.

    Thank you for sharing your and your son’s experiences at church with us. I hope that by sharing mine, you might be able to find a way to be able to bring your son back into the church building for services one day. May God bless you and your family!

  21. I am 44 and high-functioning Aspergers… most don’t even know I’m on the spectrum, but I do. I love the “modern worship service”, but we have to be very deliberate in our Sunday morning choices. Little things make a difference. I’ll never forget the look on the young pastor’s face when I had a meltdown in his office after service because, after 20 years, they decided to move the furniture in the front of the sanctuary. Shaking, crying, barely able to speak about how upsetting it was for me. Little things are BIG things for us… like who’s running the soundboard that day and how loud they like certain instruments. We sit in the very back now… farthest from the speakers, and I always sit on the outside. I can’t be “hemmed in”. Many times, I leave the pew and stand against the back wall/doors to create space that I can manage. And often, if sitting is just too hard that day, I end up listening to the sermon from the couch in the lobby because I know I will be up and down and wiggling and unable to sit still and I don’t want to disturb anyone else. I do what I need to do to manage my surroundings, and I’m able to enjoy the day. In fact, I like it out there in the lobby. It’s quiet. And I have a chance to have the one-on-one conversations that I crave.

    For those of you who are “observers”, be patient. Be loving. I truly believe everyone is as understanding as they know how to be. Sometimes we just don’t understand what we’re looking at, so we don’t know what grace we need to give. But I have always been given more than enough grace when I have been able to explain my needs. Some suggestions… If you realize there is a young one (or even an old one) in your church with these issues… carry something simple in your purse that can entertain. I carry a bag and keep coloring books and crayons/pencils in it. I like the mandala coloring books that are just patterns. Because patterns are a big deal to me. Gently offer assistance. They probably won’t take you up on it the first day, but don’t be surprised if down the road somebody taps on your shoulder or gives you a longing look. Come sit beside me in the lobby and talk. I LOVE one-on-one conversations. I CRAVE them, but when you have to separate yourself in order to cope, people assume you want to be alone. Sometimes, I do. But most of the time, I want to talk and just don’t know how. Offer. Or just sit quietly with me. In a one-on-one setting, I will usually start a conversation if I want one.

    For those of you who deal with the issue… Don’t worry. Don’t apologize. Don’t feel guilty for what you need to do. Just figure out what works for you and do it. Sit away from the speakers. Deliberately come early/late and stay in your pew while people are crowding the aisles coming/going. Let people come to you. Talk quietly to your child and keep a safe arm around them. For my son, I used to do Hang Man and make Word Searches with words relating to what the Pastor was talking about. I went to the Pastor and he started sending me the scriptures and the topics in advance, so I could pre-make little games for my Aspie son that would engage him in the sermon while allowing for what his mind was going to naturally do. Have a list of who you want to talk to that day, and share that list with your child. They will help you find that person, and they will be better able to manage because they know the plan. They know where you’re headed and what’s coming next. Keep a dialogue with them about what you’re doing. It is so much easier when you just let them know what’s coming next. And if you want to go out for lunch afterwards, choose a quiet or a special place to them, where they naturally relax.

    Don’t be afraid to have conversations with people about it, to explain your needs. Talk to the pastor(s) so they understand the issues. Trust me, you’re not the only one, and pastors WANT to understand the needs of their congregations. If they don’t want to understand, then you don’t want them for your pastor. Talk to the Sunday School teacher. Talk to the elders. Talk to the ushers. They will be your best friends, because they will help you find quiet spots and they will be the ones who are the friendly face and will often quietly play with your little one in the back where no one can see. The ushers ROCK! Don’t be afraid to do what you need to do. Just experiment and figure out what works for you and your family. And it doesn’t have to hurt.

      1. My pleasure! Thank you for caring! A piece of advice from an admin perspective… If you have special needs children (or even adults) in the congregation, you might consider inviting a resource person from your local school(s) to come and give you some advice on how to make your church a more comfortable place for these individuals. They may even be able to offer training to, say, ushers and/or Sunday School teachers on how to help these precious ones. One thing our resource teacher says is that she always keeps sour candy in her desk drawer. She’s learned to recognize how her different students look when they’re becoming upset, and she’ll give them a piece of that candy and she says she can see on their faces as they relax. Also, having a quiet room where they can go and calm themselves down is always a good idea. My son’s teachers have, from time to time, excused him to go into the hallway and calm down if he’s getting upset. I am so grateful for people like yourself, Deborah, who are sensitive and want to understand. It makes things so much easier!

    1. I am in tears, Rachel. There is so much I want to say, but would need a whole new blog post to do it. Thank you for sharing what it is like for you. Thank you for encouraging “observers” with such grace. Thank you for sharing all of your wonderful ideas for managing your needs and your sons. Thank you for encouraging me to keep finding a solution that will work.
      Your words – “I LOVE one-on-one conversations. I CRAVE them, but when you have to separate yourself in order to cope, people assume you want to be alone. Sometimes, I do. But most of the time, I want to talk and just don’t know how. Offer. Or just sit quietly with me. In a one-on-one setting, I will usually start a conversation if I want one.” – This describes my son EXACTLY. I want to print them up, distribute them, recite them, put them on a t-shirt so that he might be better understood.
      Thank you with all my heart for this.Not as a blogger – as a momma. I am so blessed by your experience and wisdom.
      Love,
      Shawna

    2. Rachel, please let me know if you would be open to me re-printing some of this. I would love to share it with as many readers as possible.
      Thank you,
      Shawna

      1. You may absolutely reprint any and/or all. If you would like to contact me privately, I would love to discuss further. Have some things I’ve written that I’d be willing to share.

  22. The judgement cuts like a sharp knife, even with your explanation of what’s best for your child. Jesus isn’t the author of church. Church is the gathering of a group of people who talk about him and perhaps about our Father and Holy Spirit. We can and do have relationship with our Savior outside of church walls. More of us than ever are making our home our sanctuary and a place of fellowship for those like us who cannot find a home in church. We were made the way we are to find our place in right relationship with our God outside four expensive walls of a building.
    Don’t ever feel like you must explain why you aren’t present at church gatherings. Jesus needs no explanation and those who point and wag their fingers don’t deserve one.

    1. Jesus needs no explanation…I love this quote of yours. I have never felt like I have to explain my son to Him. He made him, fearfully and wonderfully. Thank you for your comment, Deb.
      Love,
      Shawna

    2. “The judgement cuts like a sharp knife…”? I’ve said before and I’ll say again. As both an Aspie and a Christian, I don’t believe the people are judging or that it is their intent to judge. They just don’t understand. They haven’t dealt with it before, so how can they? They need to be educated. That’s not a fatal flaw. It’s a lack of exposure.

      I’m trying to rewrite this as calmly as possible, because the truth is that your attitude offends me on many levels. If I withdraw… If I crawl into a hole, which you seem to suggest is the best answer… If I keep it to myself and do nothing to explain to other people what it’s like to be an Aspie… then how are they ever to understand how to relate to me? How are they to know why my son is “eccentric” and how are they to ever be able to accept him if I don’t teach them what they need to know. He’s different. I’m different. I know it. And the kids I grew up with, I guarantee you they knew it. But we didn’t have a name for it back then. I was just the weird kid, the freak who wandered the playground by herself, that nobody talked to because they didn’t understand a word that came out of my mouth. And I didn’t understand WHY they didn’t understand… I wanted to be the same. I wanted to be like them. But I wasn’t! So what good is it to anybody for me to stay inside my own home, my own comfort zone, to wall myself away… How am I helping anybody??

      Because this… this is what happens when I “stay in my comfort zone”. “Everybody’s happier.” Except that’s not true. I’m not happier. I want to be out there! I want to be part of the world! I want people to see me, to know me, to care about who I am! And that can’t happen if I stay in my house and don’t go out and teach people about Asperger’s. And MY experience is that when people KNOW what they’re looking at… The lightbulb comes on and they go… Ooooh! And they are so sweet and wonderful and accepting and I have friends and I have made them better people because I have taught them something they didn’t know.

      I get that you’ve probably experienced rejection in the church. But don’t you dare talk to an Aspie about rejection. We have experienced rejection. In every arena. In the church. In school. At the grocery store. Even at home… from people who really do care very much but they don’t understand what they’re looking at. Perhaps the people you condemn as having judged you were just people who didn’t understand. And you judged them instead. When you could have taken the time… spent the energy… and taught them about something new to them.

      I’m sorry if this is harsh. I do not intend it to be. But please do not suggest to someone that hiding away their Aspie is going to make their life better. It won’t. Hiding is what hurts! I am here. Love me or don’t. But I will still be here. And I will be who I am by the grace of God. And if you don’t like it, you have the option to leave.

      SHAWNA… PLEASE don’t hide. People are smarter than this. People can understand if you tell them. And they DO care! I truly, truly, truly believe this! They DO care. They just need to be told. Your child does not have to be locked away. Your child does not have to be sheltered and hidden from sight! Your child is a beautiful being, fearfully and wonderfully created by God Himself to be exactly who he/she is. In our house… We do not treat Asperger’s as either good or bad. It is a fact. That’s all. It’s who we are. And we learn through our lives who can deal with that and who can’t. And some people… churched, unchurched, whatever… some people can’t deal with it. Their loss. Your child has amazing, wonderful things to offer the world, and don’t you DARE keep him locked away where no one can benefit from the amazing things he has to offer!

      My son is 16 this month. And we have taught him how to talk to other people about his Asperger’s. In his Robotics Club, he has to interview and discuss his contributions to his team. And his speech begins with… “My name is Camden, and I am special, because I have Asperger’s Syndrome. What this means is that I see the world in a special way, and I’m able to show my teammates things they wouldn’t see otherwise…”

      The big thing to Cam… He needs the facts. We Aspies deal HEAVILY in facts. We trust them. We rely on them. For example… When Cam had to have his tonsils out, by special request, they let me bring him to the hospital the day before, and they gave him a tour and told him exactly what would happen at each stage, and introduced him to the people that he would see the next day… We handed him the facts. A suggestion for your son… Take him to church when it is empty. Allow him to familiarize himself with the hallways… how to get to the restroom without a lot of people… let him sit in various pews and find one that he really likes. Then talk to your pastor and say, hey, we have a legitimate need for this. Example… I have to have things balanced. It’s very important to me. So although I sit in the back, as far away from the speakers as I can… I also sit on the aisle… as centered as I can be to what’s happening on stage. If the stage is “furniture-heavy” on one side (meaning, there’s a lot of stuff on one side and it’s pretty empty on the other…), I need to find a place that “feels balanced”. Feeling out of balance will make me insane!

      There are things you can do. You don’t have to hide. You don’t have to be afraid. You don’t have to be self-conscious or worry about who’s around you or about what to do… You have to figure out what works for you and make the appropriate adjustments! It’s ok!! You can do it!! And if you would like to talk more and would like specific suggestions, please feel free to message me privately. I am ALWAYS ready to talk and to do anything to help another Aspie!

      And by the way… just so you know… In our little town, a few years ago, they elected an Aspie the Homecoming King. My son has what’s called a “Circle of Friends”… His teachers use his peers to teach him how to interact appropriately, but at the same time, they learn about him and they become his biggest advocates in the school. One day, when I asked my son yet again about bullying (because this is a BIG fear for an Aspie, especially a boy), my son said to me, “Mom. People don’t pick on me because I’m an Aspie. In fact, I think they are more protective of me because I’m an Aspie.”

      My son is PROUD of being an Aspie. He thinks it’s the best thing about himself. There are coping mechanisms. Ways to adjust. And there are people out there ready to help you. Please let us help.

    3. And one other thing, Deb. Jesus IS the Author of the Church. Jesus called the Church “his Bride”. And the Apostles went into great detail about the need of the Church for diversity, for different people. Not everyone is an eye. There have to be feet and ears and hands… JESUS was “in the habit” of going into the Temple. He attended Synagogue weekly, and encouraged and told his followers to do the same. Good gracious! We were specifically CREATED for COMMUNION with God… in the image of God. God wanted communion with US, and created us as beings who NEED communion and community and relationships. What you said… It doesn’t work for Aspies. And it doesn’t work for the Church. If you have a problem, you don’t walk away. You fix it! If you walk away from a church because it has problems, then the church has no ability to improve. YOU exist in the church to make it a better place. Heaven is perfect… Church is for Sinners.

    4. Ok. So one other thing you should know about Aspies… We do extremes. We either don’t react at all, or we react bigger than anybody else is ready for. So let me say… Deb… I am sorry if my reaction is “over the top”. I have big emotions, and when they’re triggered… They’re big.

      That said… In regards to what you said… There is a time when it is appropriate to withdraw. But that time shouldn’t be determined by other people’s reactions to you or to Asperger’s. It should be determined by your own personal needs. If I wake up tired, I’m more emotional, and I’m more likely to struggle with crowds, and my senses will be on “high alert”. That’s a good time for me to keep to the back of the crowd, or even just stay home altogether. That’s based on me, and my physical needs.

      I do not believe it is healthy either for the Aspie or for the Church/Community (whatever your community is) to withdraw simply because of “misunderstandings” or because of people who don’t get it. People who don’t get it CAN’T get it if you don’t sit down and talk to them and tell them about it. “Misunderstandings” are just that. I was sitting in a theater once, and we were waiting for the end of the credits because we knew there was additional footage at the end. There was a couple sitting in front of us, and then a whole row of people further down. One of the men in the front got up and started pacing back and forth while the credits were rolling. I watched as the couple in front of us got more and more nervous. His movements seemed odd. They were erratic. They certainly weren’t “normal”. And in a world where a young man can go into a theater (in Colorado) and start shooting the place up, how can you blame the couple for becoming nervous. Eventually, they got up and left, cutting him a wide berth as they went. And I looked at my husband and I said, “He’s an Aspie.” And my husband said, “Clearly.” You see, he’d sat through the movie, and he wanted to see what came after the credits, but he was at his limit. He’d sat as long as he could. They call it “stimming”… self-stimulation. He wasn’t bothering anyone and he wasn’t going to bother anyone. He just couldn’t sit anymore. His friends knew that. None of them even flinched. They didn’t say, “John, you need to sit down…” They didn’t walk up to him and try to pin him in so he wouldn’t bother anybody. They talked and laughed and continued with what they were doing. That’s just John. It’s what he does.

      I don’t blame the couple who left. I don’t consider them judgmental. They just didn’t know what they were looking at. I still wrestle with whether or not I should have leaned over and explained it to them. I think it would have been better for them if I had. You see, it wasn’t anybody’s fault. He was doing what he needed to do. And they didn’t have the experience to make a proper assessment of the situation. You can call it “judging”, but I don’t see it that way. I see it as a need for education. And those of us who know what we’re seeing… we have a responsibility to people, wherever we go, to help them understand. And that improves things for everybody.

      That’s what I meant to say. Walking away… it doesn’t help. Staying home, while sometimes necessary… I don’t believe it’s the answer. It doesn’t teach him how to navigate the world he has to live in, and it doesn’t teach people how to live with him.

      From the Christian perspective… If you don’t stay… Then nothing changes. Church isn’t just a bunch of people. And I’m sorry if that’s the way it’s always been presented to you. My church is my second home. And I have to help them in the places where they’re weak. Or they can’t grow, and they can’t get stronger. And sometimes… I’m the one who needs to grow. And so there are times when it may feel judgmental, but I need to seriously evaluate my position and whether or not it is Biblically sound. If it is, then I need to be educating the people I’m coming up against. If it isn’t… Sometimes, I’m the one who needs to change.

      I hope that is more rational and, again, I do apologize for anything that may have been “harsh”.

      1. Thank you for this, Rachel. I think it is so hard to know the right thing in all of this, and grace on all parts is so important. I appreciate your demonstrating that here.

        Also, I have tried to send an email to the one registered on the blog, but it continues to bounce back. Would you mind contacting me at nottheformerthings@gmail.com and we can talk further about your writing?
        Thank you so much.
        Shawna

  23. Good read! I do not have a special needs child, per se. My daughter does have ADHD. While this is mistakenly just seen as more about a behavioral issue, a true ADHD child is hypersensitive to everything. Believe me, we believe in discipline, so we knew that her issues early on were not behavioral. Their mind never shuts off, everything is hyper stimulated and dramatic. A pencil feels like a lead weight in her hand, I can’t have a conversation with her because five words in she is looking at the one hair out of place on my head. Sitting in a desk at school to learn, is like chaining us to our chair. However, she can tap dance, break dance, and as long as she is moving can get it. Sitting in a church service is very difficult for her. But she is smart, and the Lord is with her. I have also had many friends with children with special needs, especially autism. I commend the churches who make a point to have special services and accommodate the special children, so that the parents can be one in fellowship. I visited my in-laws in Missouri not too long ago, and they go to a very small country church. There were two girls in the church, young girls about six or so. They had special needs, and were very loud during the church service. I wasn’t used to it, and at first I didn’t know how to tune it out, and I got frustrated. Not with them, but the situation. I kept thinking, what can we do for these girls. You know their parents are not getting a bit out of the sermon or enjoying the fellowship. The best part though, was that no one in that church cared or judged. They had known her since birth, and loved her. Just as we should love all people, all children, whether we know them from birth or not, the Lord did and does. From previous experience with other parents who have children with sensory issues, or special needs, I’ve seen many just not attend church. I don’t blame them. However, I reminded them that were ever two people meet together in His name, that is church. There’s a lot to be said for home churches. 😉 it doesn’t have to be a commercial setting. The gospel and the Love of the Lord is all you need! BTW… On a sidenote my husband and I are moving back to Missouri in the next couple of months. One of my first orders of business, is to start that special class. I pray for the Lords guidance, and I pray that you find answers and peace soon. In love…
    Stephanie

  24. Several years ago, a family in our parish had a daughter born with multiple disabilities, including being deaf-blind. For several years, they did not come to church at all, in spite of being regular attenders with their two other children before her birth. About two years, they spoke to our entire parish about the difficulty of having a special needs child, and feeling unable to attend church. Several parishioners got together and created a group of volunteer “helpers” to stay with this precious little girl during church and Sunday School so the parents and her two brothers could attend church. There is no shortage of volunteers who help this child attend Children’s Chapel and Sunday School with other children her age. I only wish we had known sooner how to help.

  25. I am a practicing Catholic, and it was one of the most heartbreaking experiences of my life when my parish (at the time) turned out to be the least hospitable, inclusive, and accepting place for my two disabled children. I naively assumed that my faith family would, of course, embrace my children and show them God’s love. I was completely unprepared for the opposite to happen. We have since moved states and changed parishes, and it’s somewhat better. I would say that the kids are tolerated, but not at all enfolded by the community. My three neurotypical kids are quite connected to our parish, and though that makes me happy, it makes the hurt worse, because the differences in treatment are so apparent. We go to Mass weekly, though there is no way to get my son (who is significantly more involved than our daughter with special needs) involved in the community, as no opportunities for him exist in our parish. He loves to sing and enjoys participating in the sacrament to the degree his able, and I remind myself that while he and my daughter might be ignored by the parish, God sees them and their beauty, for they, like the rest of us, were made in his image and are beloved. I just feel lonely and sad about the experience though, and I’m so sad that a place and people who should embody peace and acceptance for my children, turned out to be such a sorry experience.

  26. My son is almost 3 and recently diagnosed with autism. My problem is that when he turns 3, he will be expected to join the other kids in children church, which he can’t handle or sit the service, which he can’t handle. Explaining this to our fellow congregants has been excruciating. I fear that I will simply stop going although I love it. It just feels so hopeless without support.

    1. I totally understand the emotions you are describing, Sara! It can be really, really challenging in our circumstances. The one thing I want to encourage you in is that Jesus loves you and your son no matter what. I have learned that some seasons of life are easier than others in taking our little guys to church, and sometimes, we just need a little more time and flexibility to live through them.
      Praying for you and your son, and that your church surrounds you with love and grace.
      Love,
      Shawna

      1. Thanks Shawna. We are only as strong as we allow our Savior to be for us! I keep praying that my husband and I don’t get discouraged and with 3 other Littles it’s a challenge. I appreciate your encouragement!

  27. Wow, reading your blog was so real to me. My son with special needs who is now 13 still can’t enter a church without being terrified, no matter the size or style of music. We tried for years and years and did like you, drag him to church because we thought it was the right thing, and people always told me, he’d get used to it. Well he didn’t! We tried dividing up and one would stay home and one of us would go with the other 2 children. But I wanted to serve God as a family. So we started home church. My children love it and have probably learned more about God and Jesus being at home. I still long to go to church with my entire family, and I do say I worry about not having my other 2 children involved in the church, but right now it’s what we feel is right for us. Thanks for the article and look forward to the book.

  28. Hi Shawna, I am the director of the Champion’s Club, at Faith Church In New Milford CT. I want to extend an invitation to you and your family. ˇThe Champion’s Club is a Special needs program that developes our exceptional children Spiritually, Physically and Intellectually. We have a Motor room, Sensory Room and an educational room with a ratio of 1 one 1 instruction. 1 % of all churches service special needs families..we want to break the stigma that is attached to special needs children and their families. For more information on the Champion’s Club please visit http://www.championsclub.org and read the incredible story of Pastor Craig Johnson and his wife Samantha. Shawn, God is waking up the churches, we are listening and finally we are moving towards the goal and bringing God’s word to ALL of our children! “”Speak up for those who cannot speak for themselves, for the rights of all who are destitute. Speak up and judge fairly; defend the rights of the poor and needy.” (Proverbs 31:8-9)

  29. Thank you so much for this post. I just came across it this evening while thinking about how much I Miss my church services. How much I had no idea that I would have to choose to forget about attending service so that my child could be ok. Your posts are always so encouraging and give the encouraging words that are needed! God bless you and your family!

  30. A possible solution is to add an acoustic service one day a week, one without audio-visual aids. Such a service could also be geared to address the other sensory issues: adjusted lighting, no food or beverages, no perfume/cologne, greeters trained to understand and function in a mode of “I’m here if you need me” vs. reaching out to each person, and so on. Depending on the number of people in attendance, the service could even be held in a smaller room. With the growing number of both children and adults with sensory issues, this seems like a simple, logical, and do-able solution for at least one church in every community.

  31. I’m not autistic and I do not have any kind of issue where I am extra sensitive to stimuli. Yet everything you describe, the smells, getting bumped, all the talking at once, even the sound of writing instruments scraping along paper etc., I have many a day that I can’t handle it and feel like my teeth are going to fall out! So I cannot even begin to imagine what it must be like for any person, child or adult, that has been given an extra heaping dose of sensitivity to stimuli. May God bless you and keep you, May His face shine upon you and may He save you in His love ~ all of us are children of God. And I pray that should I ever be in the company of such special people that I will **remember** that they are not just being annoying, they are not spoiled: this is their normal and I must leave my expectations checked at the door.

  32. As a child I experienced frequent panic attacks at church (though to a lesser extent than your son). I’m almost 21 but wasn’t diagnosed with aspergers until I was 18. My parents thought forcing me to go to church every Sunday was the best thing to do but it just caused bad associations with church, especially when they made me go to choir and youth group. I had no friends and was always alone. I still have panic attacks at church. The music is too loud, it’s too crowded, and casual conversation is difficult enough with people I know not to mention all of the strangers who are unnervingly friendly. I wish there were more services out there that were designed to be friendlier toward sensitive children AND adults.

  33. My son entered Sunday school at five years old. Church has always been an issue except when he was a small baby. Most Sundays we would end up in the playroom. I tried very hard to keep him out of there determined to make it through church. Every Sunday we ended up in the playroom and every Sunday I felt defeated. Sometimes he would have meltdowns and the people who also watched their kids in the playroom judged us. Some Sundays I couldn’t even work the courage up to go. As he got older and was finally able to go to sunday school it didn’t work well at all. Every Sunday he was sent out. Every Sunday we were getting nowhere. When I decided to finally have a talk with his Sunday school teachers. That went nowhere. Every Sunday he was still sent out. He couldn’t take staying in church so if Sunday school sent him out we were back in the playroom. I was ready to give up, but thought I’d give it one last shot and talk to the pastor about my son and the on going issue of Sunday school. As I called the pastor in for a meeting he called in a few other people. I told them my son has autism and Sunday school can be difficult for him but if they are willing to work with him he can make it through sunday school. We have been on this path with them for about a month and a half. So far we’ve only had to leave one Sunday. We have the teacher’s take him out for a small sensory break so he doesn’t get overwhelmed. I’ve also noticed the less time he has to sit through the loud music and worship the better he will do in Sunday school. So we have been going in late. Which makes it to where we don’t deal with the crowds as much. We also have used a weighted vest or belt or both. Which help keep him focused. It is very important to be very consistent with my son. He learns things by retinue. Also you may want to try noise cancelling headphones.

  34. It would be awesome if churches had a SAFE ZONE entrance and sound proof room with TV monitors (in case parents choose to stay till they are comfortable) where children with Autism can be free to worship and learn at their own pace; while their parents do the same without distraction knowing their children are not hurting…

  35. Hi, I have recently been diagnosed with ASD at the age of 20. I know that this is an old post, but I’ve been googling for answers, and came across this place.

    I’m extremely fortunate in that my autism seems limited to sensory problems involving taste/smell, attention, and social difficulties. I have very embarrassing meltdowns, thank the Lord above.

    But the social problems are the worst. I’m quite active in my church, but have to avoid events and dinners (doubly so due to smell of food – no thank you!) and fidget in front of people. My voice is either too quiet or too loud, I don’t know what to do with my face besides grin awkwardly, and I sometimes hurt my hands from wringing them so much during conversations. I shy away from fellow churchgoers, and avoid them when I can. I snub invitations for social gatherings and volunteer events. It’s distressing, and I know I appear aloof and uncaring to a lot of the folks in that reach out to me. I can’t help it! I get tired, and frightened, and embarrass myself. I hate the disappointment I’m told people feel after they talk to me. I do love everyone in my church, I just can’t show it like other people.

    The diagnosis has explained so much. With it (and a bit of saving up – adolescent diagnosis is expensive) I can begin to address my problems. But it’s come up with another dilemna – do I tell my Church? As awkward and withdrawn as I am, I still feel like they’re my family. I’ve gone every week since I was 2, and Mass has always been a quiet sanctuary in a scary, crowded life, where I can feel accepted and loved by my God.

    I feel that telling my Church might clear up any misunderstandings, and I must admit I feel like I’m lying by hiding such a big part of myself away from my family, but I don’t know if they’ll accept me. What if they don’t believe me? I’ve been undiagnosed for two decades, after all. Even if they do, I’m afraid they might treat me differently, or tell people outside of Church. I already have few friends my own age because people think I’m “odd”. I’m worried about employment opportunities and reactions of other people in my community if they find out I have autism.

    Sorry if this is too long! I’m just feeling very, very lost and frantic at the moment. Little things tend to pile up on my emotions and make me very emotional about my problems.

    1. Gabby, thank you so much for your comment and question. I think you are so brave, to pursue the diagnosis you needed to make sense of all of this, and to be weighing all of this.
      I would like to post your comment on our Facebook page – there are many adults living well with autism who follow, and they will be able to give you the perspective that I cannot. Please let me know if you are comfortable with this – you would be completely anonymous.
      My instinct is that you should tell your church. Based on what you have described, it is always a place that has felt safe. You need your people to help, to love and to support you right now. I also want to say that as difficult as this seems right now – knowing who and when to tell – I do think it gets easier, as you become more comfortable with it all.
      No matter what, I am praying for you this morning.
      Love,
      Shawna

      1. Hi Shawna, I cannot tell you how thankful I am for your quick response and kind words. I don’t mind at all if you put this on facebook – I’m interested to see any advice that any other autistic individuals might have. Again, thank you so much for your support. God bless.

    2. Just saw a typo in my first comment. What I meant to say was “I have few embarrassing meltdowns, thank the Lord above.” Ooops!

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