MSNBC carried this story yesterday with the subheading: “Recent cases of public disruption reveal complexities to being considerate.” But the article raises a much more fundamental issue than public civility.

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Any parent of an autistic child knows that the question “how will my child behave in public?” is a daily anxiety. How to balance the needs of public civility/safety with the need of your child for socialization? Not to mention your own need to have a life?  Especially if your child has outbursts or can be aggressive, this is a very, very tricky and often distressing issue, and the emotions surrounding it can lead to extreme reactions.  If you do not have an autistic child, you can not understand the agony this issue causes parents. In my experience, public reaction to my child (and the accompanying judgmental attitude) is a daily wounding that eventually leads to either anger, despair, or resignation (and sometimes cycling through those three emotions in the course of a few minutes). This is an issue that I can’t discuss in a coherent fashion, so I’m going to go with a stream-of-consciousness approach here.

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The article discusses a recent, controversial case in which a church barred an autistic family from its doors. In my experience (I am on a very large listserv for autistic parents) this happens frequently.  This happened to us as well – a wounding that caused us much pain and bitterness at the time, and that I have struggled to forgive (even though it happened 8 years ago). Unfortunately, church-goers can often be the least tolerant of child misbehavior (especially because, according to the Bible, the ability to keep your household under control is a criterion for leadership; failure to do so means that you are not a competent parent and therefore not suited for church leadership. This causes a lot of shame – but that is another post). I was the worship leader at this church; every week I was pouring out my heart and soul to lead the worship team (voluntarily, I might add – no pay) and I invested myself deeply in the church.  My husband was playing bass in the worship band. On Sunday mornings, we were there for both services, which meant that Rob was in Sunday school twice.  Rob could be disruptive in class; sometimes aggressive, but more often just verbal disruption, or refusing to participate in some of the class activities. I found that his success greatly depended upon the attitude of the teacher. We were fortunate that for about a year, there were 2 couples that were deeply invested in making sure Rob had the attention he needed to make Sunday School a success. But those couples moved, and no one rose up to take their place. Rob began to flounder, and act out in class.  My husband quit the band to take care of him; but at that time my husband was not dealing well with Rob himself, and there was a lot of friction at home. Sunday mornings became a source of extreme anxiety. The pastor began to get complaints from other members about Rob’s behavior. To do him credit, he tried for quite a while to fend them off, but eventually decided that the needs of the many outweighed the needs of the few. So he told me, rather abruptly after service one day, that Rob was no longer welcome at our church.

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I was devastated. In retrospect, I realize that our church was small, and not every church is willing or able to minister to disabled persons. That takes a lot of time, energy, and commitment, which is often beyond what volunteers are able to do; and the church did not have the budget to hire professional staff. We really did not have the option to leave him at home. Respite care was extremely hard to find, and none of the extended family would watch him. So either he came with us, or we did not go. I left off worship leading, and my husband and I alternated taking Rob to church. But more and more often we simply stayed home. It was too painful.

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What, you ask, did we expect? What would have ministered to us? Here is the cry of my heart (one that I suspect is echoed by many other parents of an autistic child): Listen, church, to the cries of a member of the body that is hurting:

Love us. All of us. Love our child, for Jesus’ sake. We are isolated, exhausted, frightened, discouraged, overwhelmed, and often on the verge of despair. Our marriage is struggling. We are in financial straits because of the many treatments that our insurance does not cover. There is friction with the extended family.  Our constant concern, morning, noon and night, is the welfare of our child.  We feel guilty or ashamed of our incapacity. We worry that we are neglecting our other children. We fear for his future.  We are struggling to hold onto hope. And for sure, we struggle to find God in all of this.  On a Sunday morning, for a few hours, is it too much to ask to have someone else lift that burden? So we can fellowship, worship, and find new strength for the following week?

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We eventually left that church. The church we are at now is much more accepting. I knew we had found the right place when I walked in on a Sunday morning, and there at the back was an autistic boy, sitting at a table with headphones and a portable DVD player, rocking and humming – and no one minded!  This church is even smaller than the one we left, but there is this difference: in this church, everyone looks out for each other.  If a toddler is crying, someone else will come up to the harried mother and take the child to try to distract and calm him, so the mom can continue to worship. If one of the autistic children wanders outside into the courtyard, someone is sure to follow him to keep an eye on him, so the parents can continue to worship. In this church, we bear one another’s burdens. And that has brought renewed hope to our family.

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Ironically,  Rob still wants to go back to our former church, because he knows so many of the kids. Since his behavior is so much improved, we take him on occasion, but we don’t go there ourselves. He is welcome so long as he is not disruptive. But we never told him that he was once barred from attending. Why put a stumbling block in his way?

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