“Invisible” Autism Families; How the Church can Help
My family doesn’t get out much. You might see two or three of us at the grocery store, the school parking lot, or even at the movies. But you would never know that we have five children, because we almost never go out as a family. Restaurants are not worth it, and don’t even get me started on theme parks and state fairs.
We are like many invisible families with autistic children. We stay home.
Why do we do it? Not because life is just so sad and we can’t get out of bed. No, we stay in because home is easier. We don’t have to worry about shopping cart tantrums in the cereal aisle. We don’t have to hem our son in the corner of a booth to prevent escapes. At home, he can run around and explore his own environment in safety and familiarity.
According to the CDC, 1 in 88 children now has autism in the U.S. For boys, the numbers are even worse: 1 in 54. What does this mean? It means there are many invisible families like us right in your back yard.
What Churches Can Do
For invisible families, going to church is worse than going to a restaurant. It’s just too much to expect your kid to sit quietly for that long. When my church hired me, my boss Pastor Joshua Rivas understood this dilemma. There were two other autistic boys in our congregation, and he wanted to help all of us. So he proposed a strategy that he thought would be effective and, as he likes to say, “simple and sustainable.” He was right.
The Strategy
1) We designated a room at church for special needs kids. Why? Because these boys were too old for the nursery and too disruptive for the the main service or sunday school classes. They needed their own space where they could flap and stim and make noises. So we went to work on the room, removing the loud decor and repainting it in an effort to create a calm space. We named it “The Open Heavens Room.”
2) We looked for toys, books, and activities that autistic kids enjoy. No TV’s, mind you. Tactile tools to help our kids grow. After a while, people started donating. There is even a small ball pit and an exercise trampoline. My son loves it there. He thinks he owns the place.
3) We educated our congregation. They know our kids now, and they don’t get upset if there are disruptions. We get questions all the time now about how autism works, and how to approach our kids. And you know what? The awkward mystery that used to be there is gone. I love seeing people of all ages hug my son and try to engage him. Sometimes he crawls into their laps and scratches their arms. They don’t shrink back from him. In fact, they love it. My son has become an accepted member of the church, with dozens of aunts, uncles, and grandparents all looking out for him. It’s awesome.
4) And this is the most important step… We HIRED a professional to work with our kids every sunday morning. Not a volunteer from the youth group. A professional. Yes, it required a little money, but it was worth it. We wanted to be sure we had someone who would know how to disarm tantrums and help our kids stay safe. Someone who would not be intimidated by our son’s screaming, but could calmly say “look me in the eye. Use your words.”
We found Lori.
Lori works at a stellar autism program nearby. We used to send Jackson there before he got too old. The boys adores her almost as much as we do. Every Sunday from the beginning of early sunday school to the end of church, Lori challenges our kids to cooperate and use language. She links their hands and leads them into the main service when the music is blaring. They like that. She even takes them outside on walks, reminding them to “Stop. Look both ways. Get your grown-up!”
Rather than babysitting, Lori is helping our kids have fun, learn, and grow. No Veggie Tales episode can do this. Only someone with good training.
One important note here: we did not look specifically to hire a Christian. We looked for someone who loved and understood special needs kids.The fact that Lori is a Christian was just an awesome bonus. But Jackson had many teachers in that stellar program I mentioned. Many of them were not believers, but I can tell you without reservation that they loved him. Why else would they work in that field? They love these kids.
We have not advertised our program except on our website, but three months ago, another family heard about it. A large family with three boys on the autism spectrum. Like us, they love Jesus but often didn’t have the strength to brave church. So they joined us.
Since the kids are happy in the Open Heavens Room, mom and dad are breathing easy during the service, and they are quickly becoming part of our church family. That’s the best part. You see, our church knows how to love, and now we can expand our community to include others–hidden families who especially need that love. Now, we are talking about starting a support group for autism families around our city. Because they are out there, even if we can’t see them.
A Challenge
One of my favorite bloggers Matt Appling recently lamented, “Nearly every cause that people get passionate about, the church lets pass by.” He was talking about bullying, but the statement rings even louder for autism. There is so much passion here, and so little response from the church as an institution. Maybe that’s because autism has become political with all the funding requests and the back-and-forths about vaccines and potential treatments. Maybe the church is just dizzy, and doesn’t know which slogans she should be chanting.
But then, why would we assume political activism is our only avenue for a response? Can’t we take individual action without getting caught up in debates we don’t understand?
Friends, Autism is an epidemic, and it’s not going away. We cannot let this cause pass us by. We need to respond in whatever small ways we can.
Here is my challenge to my fellow pastors around the country:
Try what we have done. Or something like it. Maybe you can’t pay someone yet, but recruit some good, capable people. Create a space for these invisible families. It will cost a little, but it will be worth it. Believe me, families will come. And when they do, sick your people on them. Surround them and surprise them with the love of Jesus. In doing so, you will make a powerful statement to special needs children everywhere:
“You are more than sum of your social abilities.
You are created in the image of God Himself.
He sees you. He loves you. And so do we.”
What do you think? Do you know autism families in your area who would be blessed by a program like this? If so, would you do me a favor and share this article? I would love to see more churches jump on this idea.
Our local paper just did a story on our family and “The Open Heavens Room.” You can read it here.
Hello Jason! I wrote a post on inclusion in churches on my own blog. You can find it here: http://www.withouthandles.blogspot.com/2012/07/beautiful-mess.html. I had my husband, Robert, contact you via email, as well. Being a pastor can be a lonely job, even more so as one with a child on the spectrum. Thank you for putting this out there and for encouraging all of us on our own individual journeys as believers and parents of such special children.
Emily, I loved your post. I just posted a link to it on my Facebook page. I know we’re not alone in seeing the problem… I know that… but it’s still so encouraging to read something like this. I loved your bit about “the least of these.” We cannot forget this! By the way, I never received an email from your husband, I would love to keep in touch. Blessings!
Wow! I quit going to church because my son would yell “I need to go poop” all throughout the service because we were potty training and he knew we would leave with him to go and “try”. After we wised up to him we stopped leaving the service and he would get louder and louder prompting some very dirty looks. Finally I got frustrated and stopped going all together. I wish I could find something a little more “autism friendly” in my area! What a great way to spread autism awareness and education in a loving and christian environment!
Oh, Tracy, I’m so sorry to hear this. I hope that more churches will start to understand. I think they will.
I’m not sure if our church has hired a professional, but we do have a very good program for kids on the spectrum (as well as other special needs) called SHINE with one-on-one adult buddies. If someone in Eastern Massachusetts is searching for a church like this, Grace Chapel in Lexington might be able to meet your needs. Wow, do I sound like a paid advertisement? I have no stake in this — just trying to help fellow Jesus-followers in the area!
Laura, advertise away! People need to know about these programs. Thanks for reading!
I think your suggestions are great- my only caution would be not to make it an autism members only group. Far to often children with intellectual disabilities, without an ASD dx are left out because their disability is not the politically popular one; however, their needs for specialized programs are very similar if not the same in many cases. All the best- a mother of a child with special needs.
Absolutely. That’s a great point. And we do open this up for any developmentally disabled kids. Autism is top of mind because that is the primary one we are dealing with, but we do not stop there.
Thanks for the comment, Anna!
I’ve had experience with churches in our south/central PA area that have a program called “Shining Stars” for kids with all types of disabilities, although they see autism most frequently. They had their own classroom at the church, and my boys really enjoyed it. We’ve since moved on to another church which does not have a separate classroom, but since my boys are high-functioning and included in age appropriate classrooms at school, they have made including them in the regular classroom at church work with an extra set of hands to help out.
I totally understand the invisible family thing, though – I disappear in the summer because with an eloper who is over 100 lbs., going out anywhere can be exhausting, and most times it’s just not worth it. And it’s very rare to see all 6 of us out together at any one time, as well. One thing I’m trying (and somewhat failing at) is to get people to understand that I don’t turn down offers to do things because I don’t want to do them, but because it either will be unsafe for my boys, or the stress of trying to make sure 2 of them are safe and staying where they are supposed to be and not destroying things will make me crazy, because I will not rely on anyone else to make sure my kids are safe. But I know our house is safe, filled with the types of things my kids like to do, and I don’t have to be on “high-alert” the whole time. So, I’ve been trying to get my friends to understand that if they want to see me during the summer, they can come visit at our house, but taking all of me kids off to do something just isn’t going to happen. Like I said, I haven’t been completely successful, even with my closest friends – they still don’t seem to understand.
We have an autistic boy in our church who rotates in between being in Sunday School, being with his parents in the main service, and having his parents take turns taking him out of the service. Our church also has small groups which are encouraged to reach out in some way. One semester when this boy was having especial difficulty managing in any of the available environments, it was suggested that we give his parents a break and take turns each week spending one-on-one time with him during the service. No, we weren’t professionals, but we were able to lower his stress level and his parents’ stress level by providing at least a temporary solution that made his family feel welcomed and included rather than stared at.
He is now older and doesn’t seem to need the one-on-one supervision all the time.
I hate to think that families with special needs kids are avoiding church because of the sheer difficulty of incorporating their child. This blog was terrific because it showed an idea most of us have never thought about.
Ann, this is a beautiful thing you guys have done! Really. Thank you. For sharing this, but mostly for what you all did.
Reading this, I wish, oh how I wish we had someone here that could educate our congregation and church leaders. We have an 11 year old with ASD. People in our church know it, but because he’s such an awesome kid and we manage his needs so well, they forget, or it’s a “no-go” area. You may think that’s a good thing but the point is, it’s because we manage his needs so well. By ourselves. We are constantly on alert. We had to leave a church five years ago because they had a bell that might ring and it freaked out our little boy with noise sensitivity issues. We do what we can to work around it. The music in our church now is sometimes unbearably loud for him, but we’ve taught him to tune it out by reading his Bible or Bible Facts book. Is it fair for me to ask them to be quieter for the sake of one child? The social issues are ever present and while we go to church as a family and engage with others, either me or my husband constantly has one ear tuned in to what might be going on between our son and the other children. Sometimes we arrive at church and are haggard, just having worked so hard to get there. We have not been supported by anyone. In fact, we’ve been misunderstood and judged as being “negative.”
Hey Suse. I’m sorry to hear this. I think the church is behind the curb with this issue, not understanding, for example, that it has nothing to do with bad parenting and little to do with bad attitudes. I think this is changing in many places. Hopefully you will find some understanding friends in your congregation who will stand with you. That’s what happened to us, long before we joined the church staff. We made friends, and they started to understand our challenges. It makes all the difference in the world when that happens.
Thank you for this. I am very active in advocacy for families/children affected by autism in my home state, and I’ve had it on my heart for a while now to do something within my church as well. As odd as this may sound, coming across this post served as confirmation to me that my notion was not mine, but indeed, God’s- and that I need to act upon it. I will be meeting with my pastor soon to talk about this- about how we as a church can embrace these families and truly make them a part of the church family as a whole. I have a daughter with autism- she was my gift from God that showed me my purpose, and each day that purpose gets illuminated a little more. God Bless you.
Jason, this is a great post. Thank you so much for taking the time to write it and for sharing your church’s story about special needs. My husband pastors a church near St. Louis and we have two girls with special needs: Down syndrome, autism, seizure disorder… Anyway, I am passionate about this topic and I’m sure that every church can at least create a little space to think about families affected by special needs so that if/when they show up at church, they don’t get the deer in the headlights, we don’t know what to do with you, look.
God bless, and keep going! http://www.gillianmarchenko.com/church-5-reasons-why-you-must-minister-to-families-affected-by-special-needs/
Yes! People in church usually want to love, they just don’t know how, and they’re afraid of making mistakes. We can help them get up to speed. It doesn’t take much, really!
Thanks so much for reading, and for linking your post. It was excellent! I found your FB page, too. Look forward to reading more of your stuff. 🙂
First Presbyterian in Birmingham. Michigan has a wonderful program. In addition to Sunday morning, there are two early Sunday evening services that are designed to be shush-free.
This is a great post. My wife and I have a son with multiple special needs(autism, visually impaired, and hearing impaired). We volunteer at our church by leading a class for adults with special needs. Our son attends the children’s special needs class, which is I a designated room for these children. Our church also now offers a class for student’ s(middle/high school) with special needs and our son is the only one attending right now. The student pastor knows it may take a while to grow this class and is committed to sticking with it. We cannot educate our congregation about special needs ministry until the church staff is willing to see this as a mission field, so that is what we are praying for now.
I recently wrote a blog post about the church/Christians determining whether they are pro-life or pro-birth when it comes to special needs individuals (mylittlepianoman.wordpress.com). I am grateful for your ministry and heart for special needs. I pray that we will see more churches and Christians embrace the special needs community, because they need Jesus too.
Jessica,
I’m curious to know if you were able to talk with your church leadership and start something for special needs kids? If so, how did it go? Is it still going?
Thank you, Linda
Jason,
We have a 4-year old autistic son. He’s to the point that he can sit pretty good through the main service, but he cannot handle both Sunday School and the main service.
I would LOVE it if our church had a program like this, where he could go and decompress if/when he gets over-stimulated.
It would be an educating job on my part to help the pastoral staff see this need. As wonderful as they are, I think most people don’t understand the complexities of needs of these kids until they have one or have been immersed in their lives somehow.
I agree wholeheartedly about hiring a professional to work with these kids! Our O.T. who works with our son would be wonderful at this!
What would you recommend I do to start a ministry like this at my church? I’m not part of the staff, I’m not even an official member. I’m just part of the church family. We’ve been attending for 3 years.
Thank you,
Linda
Hi Linda,
Yes, I did. I worked with the children’s ministry pastor and the lead pastor. Most of the “bringing together” happens outside of church- which is ok, and kind of the point to me. Seeing each other in church is one thing, but being a part of community is another. It’s taken a great deal of perserverance because we all seemed to be quite comfortable in our own little worlds, even when it seemed like it was closing in around us.
Love that you guys did this! Like others, I’m going to throw in an “advertisement ” for a church in the Dallas/Fort Worth area that has a spectacular special needs program. They offer inclusion (with a consistent one-on-one ‘buddy’ or self contained class that is staffed with several professionals and therapists of all sorts). We also have a special needs “mat room” and monthly recess programs and special needs “sibling” programs. Watermark Community Church with campuses in Dallas, Fort Worth and Plano. Also, they are doing a church leaders conferences soon and I’m betting there will be breakout sessions on special needs ministries! ALL are welcome, both professional pastors and anyone in service.
http://churchleadersconference.com
My heart breaks at the knowledge that many children and parents miss the love of Jesus and his church. No greater peace and joy to be found than in Him! Thank you Jason for your work to bring the love of Jesus to all.
Melody