“I’m Not Going”
One morning, as we were preparing for our annual trip to the lake house, my son Liam dug in his heels at the last moment: "I am not going." His body tensed, his breathing grew shallow, and his eyes started darting - clear signs that his sympathetic nervous system was ramping up. We were on the verge of a meltdown, but I had no clue why.
The morning had been calm and happy until that point. Liam was looking forward to going to the lake house, a vacation he loves and anticipates each year. From my perspective, nothing had changed - we were renting the same house for the same number of days, during the exact same week.
By now I had learned that when I encounter a strong 'no' or resistance from my autistic child, my intuition often fails me. I remembered the advice of Dr. Prizant: To understand behavior, we must ask why then why again.
"Why?" I asked, probably more because it was what I was supposed to do and less because I trusted I would find an answer.
"I am not going."
"That's not an answer. What is the reason? Why don't you want to go?"
"I am just not going."
I resisted my instinct to push harder or offer incentives. Instead, I told everyone to get out of the truck - we would not be departing as planned - and we went back inside. In a safe, sensory-controlled space, Liam's body softened and I tried again, this time asking 'why' calmly and with genuine curiosity.
"Because I don't want to ride in the truck."
"Why?"
"Because it's uncomfortable."
"Why?"
"Because what if there are fumes?"
"What fumes?"
"The fumes that burn my eyes?"
As we continued our gentle exploration, Liam eventually revealed that at some point during our last truck ride, he had experienced fumes that made his eyes water. He had formed a tight association between the truck and that sensory discomfort.
A challenge with associative thought processing is that if an associated thought happens to be unpleasant, it can very easily become the most prominent association. Negative memories -- especially those that evoke an emotional response like fear -- form tight associations. Our minds -- especially hyper-focused, hyper-sensing autistic minds - are very good at remembering the times our sensory environment scared us, surprised us, or let us down. You know how when you buy blueberries, you can be happily eating them until you find that one disgusting one? A nonautistic mind still trusts that blueberries, in general, are good. One bad berry doesn't ruin or change anything. But if that experience happens to an autistic child, they might never trust blueberries again. The bad taste, and their inherent unpredictability, is now the most prominent association with blueberries.
And that is what happened with the truck and fumes - the two had been linked by a powerful sensory experience. The moment we approached the truck that morning, that association fired in his neurons.
Once we had identified the true trigger, I could finally respond with real understanding: "I get it! I wouldn't want to be stuck sitting in the back of a truck and have fumes cause my eyes to start burning, with my mom not doing anything to make it stop. That sounds awful."
We talked about the fan settings and made a plan. I promised we would respond immediately if he noticed any smell and take his concern seriously. Twenty minutes after we had initially paused our departure, and with no meltdown having been triggered, Liam happily bounced into the car.
For autistic individuals, the sensory world can be extraordinarily intense. What might seem like a minor discomfort to others can become an overwhelming experience that triggers genuine distress. As a parent of an autistic child, I've learned that behaviors that might appear irrational often have very rational explanations – if we take the time to understand them.