Christ set a wonderful example by saying, "Let the little children come to Me" (Matthew 19:14). He often reached out to those who were shunned by society. We live in a world that celebrates perfection and urges our children to shine above the rest. What happens when parents in the Church find themselves with a child diagnosed with ASD (autism spectrum disorder)?
ASD is a growing epidemic around the world. According to the Autism Society of America, autism is the fastest-growing neurobiological condition in the world. In the United States, one in every 150 children will have ASD, and it is estimated that figure is one in every 90 boys. This is a tragic problem that is affecting a number of members in our own congregations. It is likely you know someone who is challenged with an ASD child.
Families with an ASD child often feel isolated, as they are often told that autism is "untreatable" and that the best option is to prepare their child for a life outside their communities. This is a tragedy for those who love the fellowship of God's people and find themselves unable to attend or shunned because of their child's "bad behavior."
As a parent of a child with several disabilities including autism and cerebral palsy, we have experienced many different situations at the Feast and at local church areas, many good, some hurtful. We are most grateful to the amazing love and kindness that the brethren have shown us over the years. Unfortunately, it is not always that way, and occasionally well-meaning people can be hurtful with their assessment without understanding the facts of the situation.
When our son was younger and his autistic behaviors were most severe, it was a very difficult time for our family. It was difficult to even get to church and, once there, we often found ourselves sitting in the lobby because our son was so disruptive. As parents, we barely had time to acknowledge the heartbreak we deeply felt and had to instantly develop an eternal fountain of patience as we dealt with tantrums, odd behaviors and an inability to communicate with our precious son.
We had many years when we felt completely broken and extremely isolated as we searched for ways to help our son. As every long and lonely day ran into another, we found ourselves fighting feelings of hopelessness as our child continued to slip into his own little world, oblivious to anyone or anything around him. And yes, we disciplined our child only to find it bleakly ineffective. We have three other well-behaved children as evidence that our parenting was not the problem.
We felt the only one who truly understood was our Great Father. During our times of most intense stress and devastation, we prayed for relief. God always gave it to us. Not always immediately, but often we eventually found ourselves in "a wide place," where we could simply breathe in peace for a moment. During this time we developed a great love for the God who would guide us through these desolate periods.
Some of you reading this may think this sounds overly dramatic. But those who have been involved with someone who has an autistic child will not. I can assure you it was our reality for a long time. I have spent a great deal of time with other parents of ASD children and found many whose stories are more heartbreaking than ours. We are blessed to have had our Eternal Father supporting us.
There were also many years where we felt supported by members of the Church. However, I am saddened to hear and have occasionally experienced that it's not always the case. Oftentimes Church members have a willing heart, but because autism presents such unique challenges, it is sometimes difficult for brethren to know how to help or support a family with an ASD child. Occasionally, our brothers and sisters in Christ have been judgmental, assuming that it is our parenting (or lack thereof) that caused such a "difficult child." This can add to the loneliness and heartbreak a parent already feels.
Church, Luke 11 and Favorite Hymns
I am happy to say that our son is now a teenager and loves church. He listens intently to the sermon each week. We discovered that he knew where all the scriptures in the Bible were.
Several years ago, every evening when I went to bed, I found my Bible opened to Luke 11—the Lord's Prayer. I began to find my electronic Bible also turned to that same set of scriptures. One Feast we noticed our son going up and down all the rows of seats and turning everyone's Bible to Luke 11. Although our son has communication difficulties, he certainly was telling us we all needed to pray!
He also has favorite hymns. He literally cheers when the songleader announces "God Will See Us Through" and "Thank You Lord." This is a young man who from initial appearances is "unaware" of much of his environment. However, we have learned that just the opposite is true.
In fact, what makes ASD children unique is that they are often overly aware of their surroundings, to the point that it is devastatingly painful and overwhelming for them. My son does not like the transition of leaving the house, so on Friday night he will tell us, "I don't like the Sabbath." That might shock some people, but he is not really saying he doesn't like the Sabbath; he is telling us that he is feeling anxiety over the fact that tomorrow he has to get in the car and drive to church. He finds leaving home and riding in the car very stressful, and he starts dreading that process. But once he's there, he bounds into church, and can't wait to start singing.
I share this with you because it is an example of how easily children who suffer with ASD are completely misunderstood because they don't know how to communicate what they are feeling.
How to Help
So, how can you help?
• Educate yourself on the subject. Because of its growing prevalence, there is an abundance of information on the Internet (for example, www.autism-society.org and www.autism.com). Ask the parents of an ASD child to help you understand what they are challenged with as they would likely appreciate the opportunity to share it with a concerned person. Just knowing that there are those who are truly concerned can often alleviate some of the isolation parents experience.
• Help the family be comfortable at church. If sitting in church is difficult for the family, talk to your pastor and sound crew about creating a "family room." Piping sound into the lobby of church or purchasing a portable headset that can receive the services (like the kind that are used for the hard of hearing) can be some options. Work with the parents to find a solution that they are comfortable with.
• Don't prejudge without understanding. A child (even a non-ASD child) who has a meltdown may have experienced a series of events that overwhelmed him or her. He or she is usually feeling a need to escape, but is unable to. This is vastly different from a child who erupts because of not getting his or her way.
• Talk to the child each week. One couple in our previous congregation in Seattle, Washington, invited our kids over when my husband and I were out on a date night. They put on the karaoke machine and our son amazingly wanted to join in. After that evening, our son absolutely loved that couple. Each Sabbath before we went to church he would say he wanted to see this couple, and eventually became comfortable enough that he would go over and say hi. We are eternally grateful for these people and the many others who take the time to get to know our son in his own unique way.
• Learn to be comfortable with unusual behavior. Don't worry if the child doesn't look you in the eyes, which is very overwhelming for many ASD children. ASD children are beautiful people who have their own feelings and thoughts and long for relationships just like you and I do. Their inability to connect and their anxiety in dealing with what they perceive as the randomness of people often overwhelms them from having relationships. But studies of adults who have autism have found that most feel very lonely and isolated and long for friendship. If you can get past the sometimes odd behaviors, such as rocking, hand flapping or the appearance of noncomprehension, you will find an opportunity to be involved with a most remarkable person that can be very rewarding over time.
The road to recovery for people with ASD is a long and strenuous journey, and there are many varieties of how extreme or mild the affects of ASD are. After years and years of research, specialists are only now beginning to understand this devastating disorder. They are uncovering a wealth of information about how our brains work, and just beginning to hold out hope that there could be recovery. But even experts say that the road to any level of progress is long and arduous and demands huge support.
Church attendance adds a particular challenge for our families who have an ASD child or a child with some other type of neurological-based disorder, because we are asking the child to do the opposite of what makes sense to him or her. Families that are struggling with the many disorders that are plaguing our children today desperately need the support of kind and loving people. Please be patient with their difficult circumstances. Your time, understanding and kindness could be the gift they are praying for. Christ said, "Let the little children come to Me." As Christ's Body, we should let all the children come to us. UN