Courtesy of the author
- My son was diagnosed with pathological demand avoidance when he was 4 years old.
- He ignores or avoids following even the simplest rules, which can make leaving the house hard.
- Traveling with him can be hard, but at the same time, it can be wonderful.
Two years ago, my then 4-year-old son, Oscar, was diagnosed with severe anxiety and as having features of pathological demand avoidance, a nervous system disability that presents as a pattern of behavior in which kids go to extremes to ignore or avoid following ordinary rules.
A direction as simple as "stow your tray table and return your seat to its full upright position" is enough to throw him into a tailspin. It has taught my husband and I to pick our battles. It is sometimes difficult to protect him (and ourselves) from ignorant attitudes about his condition, especially when we travel.
And yet we travel frequently — and we always have a lot of fun.
A recent trip to San Juan, Puerto Rico, perfectly illustrates how we've learned to amplify the joys and mitigate the challenges of traveling with a neurodivergent child.
We enjoy new locales, but we love returning to our favorite places
Traveling can be tricky even for the most regulated kids. Returning to a familiar location is one way to reduce some of the stress. Our favorite trip, by far, is San Juan, Puerto Rico. This last trip was our fourth visit to the colorful island.
I was never a "resort person," but amenities like onsite restaurants and all-ages entertainment make travel easier for a family, particularly one with a child with special needs. The place we stayed at this last time, for example, has nine restaurants, a full-service spa, and multiple swimming pools, including a baby-friendly pool. There's also a well-maintained playground and one of the most calm and child-friendly beaches in San Juan.
The world is a sensory gym — and my son is an expert at fulfilling his sensory needs
Oscar's body wakes him up at dawn, ready to explore. Within an hour of that at the resort, we've met a bearded dragon, explored the playground, played in the hammock garden, climbed along some rocks, and searched for chunky sea glass in the sugar-soft sand.
Courtesy of the author
Travel means putting ourselves in new and interesting environments. For a sensory-seeking kid like Oscar, it might mean climbing a tree 20 feet into the air or wading into muddy waters infested with who-knows-what. Knowing what boundaries to enforce and what to allow is part of what experts describe as "low-demand parenting," an approach that is specifically recommended for PDA kids.
Other parents don't always get it
Casey Erlich, parenting expert and creator of At Peace Parents, describes pathological demand avoidance as an anxious drive for autonomy and says that the more an adult tries to impose their authority, the more dysregulated and irrational a PDA child will behave. My goal is to avoid situations that trigger Oscar's anxious drive for autonomy and to de-escalate the situation when it happens.
One morning, when Oscar climbed on top of a four-foot wall separating the pedestrian path from the natural coastal environment, I assessed the situation. Was that wall built for people to be walking on it? Probably not. But were there any signs explicitly saying that it was forbidden? No. Most importantly, was Oscar putting himself in any sort of danger? No again. The wall was low and wide enough that he was unlikely to get hurt.
Even so, another tourist shouted at me to get my son down.
When someone tells me how to parent, I just smile and pretend I don't speak English
From the outside, "low demand" parenting can look overly permissive — and, arguably, for a typical kid, it might be. But we're not talking about a typical kid. We're talking about a kid who'd rather run straight into traffic than follow a rule he's deemed unjust. A kid that won't listen to "because I said so." Who once — feeling rushed into the taxi cab so that we'd make our flight — got so dysregulated that he tried to open the car door and throw himself out of the moving vehicle on the highway.
I don't have time to explain all this to strangers. I can't explain to every person we pass why my kid isn't wearing shoes on a Manhattan sidewalk or why I won't admonish him when he doesn't politely return their greeting (social mores are experienced as a "demand").
I don't owe these strangers, or anyone, any explanation.
Other people's comfort isn't my priority
Heading back to the room, Oscar eyed a shelf of crystal animals prominently displayed in the gift shop window. I was acutely aware of the salesperson's hypervigilance from the moment we entered. Before Oscar even touched the little glass turtle — which I was fully prepared to let him do — the salesperson launched herself at him and me, shouting, "He can't touch that! It's glass!"
My second child responded how a neurotypical child naturally would. Molly froze and moved closer to me. But Oscar's nervous system perceives situations like these as a serious threat, and it tells him to fight or run. He exited the store at a hundred miles an hour, headed who-knows-where.
Oscar has a one-on-one aide at school because of this behavior, but my husband and I don't have help when we travel, and there have been times when I've had to temporarily abandon my neurotypical child to chase after my son. Thankfully, that morning, Molly was agreeable. She let me scoop her up, and we were out the door, just in time to see which direction he turned.
Surrounded by nature, he is immediately more at ease
Moments later, I found Oscar in the tropical gardens and bird sanctuary, a captivating natural space filled with lush greenery and wildlife. His body was calm. He was back in control of himself and curious. I watched as he cautiously crossed the habitat toward an enormous turtle. There are no other tourists around, just a handful of bemused staff people watching him pick the animal up, just as he once learned to do at a turtle sanctuary in Sri Lanka.
"I should stop him, probably," I think. "But why?"
When you get in my son's way, things can go spectacularly bad. But when you get out of it, magic happens. One thing's for sure: traveling with my neurodivergent kid is never a dull moment. And actually, that's wonderful.