Compassion and Encouragement are Priceless in Moments of Autism Distress

Many of us that live with autism are familiar with the comings and goings of something that feels like a 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, momentary screams. Not constant or frequently, but jolting nonetheless. So here we were, in the midst of our consistently calm days, when the bomb returned with a loud crash: a surprising scream from our daughter that quickly reminded us we were back in the trenches.

Subsequently, this scream reoccurs intermittently, every few days to maybe a couple of times in a day. Each time the scream passes, we are left with a low grade ticking in the background— bringing to mind that at any moment another high pitch, trembling sound could come out of our beautiful, sweet daughter; a scream that, for a few seconds, might startle anyone within earshot and causes her distress and embarrassment. 

She covers her mouth and says “stop scream”. She later types to us apologizing, saying that this affliction is deeply stressful for her;  that sometimes she is experiencing immense physical 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 she, her dad, and I feel that it has caused others discomfort; the isolation that our daughter periodically chooses to retreat back 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; that we can continue enjoying connection, progress, fun, lots of laughter, that still exist in the midst of the underlying stress.

While we realize this bomb is a temporary visitor, living with its ticking in the background while it’s with us never gets easy or loses its potency.

For those out there that do not live with autism or any other of these types of complications, please keep in mind, when you see someone acting in a way that is odd, or even temporarily startling, that person is most likely dealing with something that is beyond their control.

That person might be working incredibly hard to get through a challenging, painful ordeal. This individual is likely to be loving, kind and talented. Adored by many. Yet, surviving an explosive obstacle. 

Take comfort in knowing there is something you can do to help: refrain from judgment and instead offer compassion and encouragement. It will be a lifeline to the person and the family, as they survive the duration of the menacing time bomb.

For the most part, the past several years we have fortunately been surrounded by people that understand this.

For example, when a 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 okay, 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 okay and mentioning that she loves having our daughter, who usually contributes and enthusiastically soaks up the content, in her class.

On that brink of collapsing in despair for fear of the visiting bomb, this was the lifejacket our family needed.

Many families and individuals that experience these involuntary behaviors do not go out for fear of judgement and disapproving stares.

Let’s change the narrative for these amazing, but isolated people and families. Let’s keep the discussions going and begin to normalize differences. Rather than fear and/or scorn, accept and maybe even embrace! Your life will be enriched for knowing these various people.

As for our family, 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 periods of unrest.

Then, when the bomb disappears, we get back on the track we were previously on, or maybe a different, better one, moving forward with our daughter continuing to share her gifts with the world.

Written by Linda Orleans of Reaching Danielle’s Voice