Many of us who live with autism are familiar with the comings and goings of the ticking time bomb—one that disappears for periods of time, so much so that we might forget about it. Then, suddenly, this bomb drops at our doorstep in the form of a returning or new obstacle, so intense that it causes us to pause our lives, alter our plans, maybe even change our current paths.
For our family, the new challenge has been sudden, piercing, sporadic screams. Not constant, not even often, thankfully, but jolting nonetheless. So here we were, in the midst of our relatively calm days, when the bomb returned with a loud crash. A startling brief scream from our daughter that told us immediately we were back in the trenches.
Subsequently, this type of scream recurs intermittently, once every few days to maybe a couple of times a day. A scream that, for a few seconds, startles anyone within earshot, Each time the scream passes, we are left with a low-grade ticking in the background, reminding us that at any moment another high pitch, trembling sound could come out of our beautiful, sweet daughter.
A scream that briefly, for a few seconds, startles anyone within earshot and causes her distress and embarrassment.
She covers her mouth and says, “Stop scream.” She later types to us apologizing, saying this affliction is deeply stressful, that sometimes she is in pain (she also has Crohn’s disease), that she feels awful and embarrassed when that scream overtakes her, at any time or place indiscriminately, with no warning or way to prevent it.
Then, there is an added stress of glances or stares, the worry we feel that it has caused others discomfort, the isolation that our daughter periodically chooses to retreat into for fear of bothering those around her.
While the bomb is ticking away, we go on with life, often feeling apprehension and angst, hoping each moment can be peaceful and that we can continue enjoying connection, progress, fun, and laughter that still exist in the midst of the underlying worry and stress.
While we realize this bomb is a temporary visitor, living with ticking in the background never gets easy or loses its potency.
For those out there who do not live with autism or these types of complications, I ask this: please remember, when you see someone acting in a way that is odd, or even temporarily startling, that person is most likely a victim of something bigger than any human can control.
That person is working incredibly hard to get through a challenging, painful ordeal. This individual is probably loving, kind, and talented. Adored by many. Yet, surviving an explosive obstacle.
Please also keep in mind there is something you can do to help: refrain from judgment and instead offer compassion and encouragement.
It will be a lifeline to that person, that family, as they survive the duration of the dreaded time bomb.
For the most part, in the past several years we have been surrounded by people who understand this. For example, when a two-second scream happened during her college course, the professor looked at her lovingly and went on teaching. The other students followed the teacher’s lead—briefly startled, glancing for a moment to make sure everything was OK, then carried on with class as usual, allowing our daughter to gather herself and also resume class, attentively and calmly.
Not only did the professor and fellow students save the moment, but this kind angel of a teacher followed up with an email, making sure everything was OK and mentioning that she loves having our daughter, who usually contributes and enthusiastically soaks up the content, in her class.
On the brink of collapsing in despair for fear of the visiting bomb, this was the lifejacket our family needed.
We will ride out this time bomb phase with love and compassion. That’s what families like ours learn to do, shield as best we can and forge ahead during these temporary periods of unrest. Then, when the bomb disappears, we get back on the track we were previously on, moving forward with our daughter continuing to share her gifts with the world.