Any seasoned parent knows the game plan. Maybe by the time my child is two he will sleep through the night. Perhaps by age four we can regain some sanity. At least by eight we can sit and have a meaningful conversation. This is not to diminish or discount the very rewarding experiences that we cherish at every stage. But the truth is that parenting is hard. However, what if my child diverged from the expected “norms”? What if his or her development and timetable were unclear? What if my child’s launching out into the independence of adulthood, as frightening as that is, was not a possibility? How would such a burden affect my health, my family and my spiritual life?
The statistics are alarming. Recent data from the CDC suggests that 1 in 31 children in the United States has been diagnosed with Autism, and the frequency is increasing with each passing year. The results are fairly even across racial and ethnic groups. However, there is a much higher prevalence in boys (1 in 20 or 4.9%) than girls (1 in 70 or 1.4%). You are no doubt aware that within these numbers there is a great spectrum of expression, intensity and disability. Also, although this article focuses on Autism in particular, I would be remiss to overlook the reality of numerous genetic and congenital conditions which have neurological impact. The truth is that for many believers these are not just statistics but an unexpected reality in their lives. They have taken it before the Lord and have accepted with love the child that God has entrusted to their care. But the question I face as a fellow believer is this: Am I helping to bear their burden or am I responsible for adding to it?
I have been guilty of sitting in judgment while watching individuals consistently arrive late to assembly meetings. But one comment from a friend challenged my high-mindedness. He was sharing with me some of the difficulties of bringing an autistic child to the meeting. He said, “We arrive 15 minutes late on purpose. I know that my child can never sit through the entire meeting. If we were early, then I would have to take him out, I would be aggravated, and it would be a negative experience for him. Maybe I am wrong, but by coming late, we can last until the meeting is over.” So much for my sound judgment! His wisdom and insight left me ashamed of my pride.
One parent expressed it in this way: “Everything feels elevated. Or better yet, the extremes have been pulled further. For example, every kid has tantrums, but my child’s tantrums may be more severe and more frequent. They are seemingly unpredictable, illogical, and more difficult to manage and stop. The child is nonverbal, which makes everything more challenging and only adds to the complexity. You don’t know if you should act in discipline or not. You wonder what everyone else thinks. Apply that framework to everything (and more) in this list: school, therapy, insurance, childcare, mealtime, meeting time, play time, bedtime, grocery shopping, work time, private study, cleaning the house, relaxing, holidays and vacations. Even your relationships with your other children, with your spouse, and with fellow believers do not escape this reality.”
This parent continued to express his feelings by saying, “You experience in the moment your fears for the future. It’s a reality that leaves no part of life untouched. Of course you have many wonderful moments. You find the routine that works for your family. But when the dial gets cranked, it goes higher maybe than most people’s typical experience. Your kid can be a ticking time bomb. The weight of time (for good and bad) is heavy. The daily reality has an unforgiving intensity. The gravity of life has shifted. Some moments are great. Other times you find yourself drifting in a sea of complete ignorance with no idea as to what you should do next. Add in criticism and comparison. How do other people judge you? Sometimes that is just perception, but sometimes it is not. There are mixed and conflicted feelings of comparing other families to your own.”
Every parent has experienced a sleepless night. You drive aimlessly down the highway in the middle of the night wondering when your child will finally go to sleep. Yet in most cases that is a one-night experience and after a few days of exhaustion you have caught up on your sleep. But what if that was your nightly routine? Fifty to eighty percent of children on the spectrum have sleep disturbance. Autistic children produce less natural melatonin, and their body may release it at irregular times. Imagine raising a child that woke up at 2am every night, not just to be tucked back into bed but was wide awake and ready for their day! How would that affect my ability to keep a positive outlook, to power through, to not just be present but also prepared for the assembly meetings?
We will finish with one more consideration that is not always so evident. Parents with autistic children are not only fatigued, frequently frustrated, and facing daily challenges, but they are marked by very present fears. Fifty percent of autistic children engage in elopement. This means that the child could wander away at any moment and bring themselves into great danger. For example, the manner in which water enhances sound and light has a great attraction to an autistic child. The sensory effect and soothing quality of water draws them in. It can be used to wonderful effect in therapy. But sadly, drowning accounts for 90% of the fatalities associated with elopement. Again, every parent knows the fear of a lost child, but as was expressed earlier, “in Autism everything is heightened and sustained.”
How can I help my fellow believers who have such a burden? I can commend rather than criticize. I can warmly encourage their continued attendance at the assembly, even with the inevitable interruptions, rather than awkwardly highlight any outbursts. I can acknowledge my ignorance of all they are dealing with and ask for specific needs to lift up to the Lord in prayer. I can thank the Lord for entrusting these children to loving Christian homes. I can, as a part of a local community of believers, be faithful in the biblical command to bear one another’s burdens “and so fulfil the law of Christ” (Gal 6:2).
