This year my husband insisted on a trip to Disney World. I resisted because our nine-year-old, James, has Autism Spectrum Disorder. James can normally blend in with his non-autistic classmates, but this was Disney: three solid days of overstimulation, temptation, distraction, and surprises.
But James is only one member of our four-person family. We also have a seven-year-old princess... I mean daughter.
I visited an easy-to-find section of Disney’s website: Services for Guests with Cognitive Disabilities, “including those on the Autism Spectrum.” There I found a chart with sensory details on each ride: smells, bumps, sounds, flashing lights, periods of darkness. There were videos to help kids prepare, and lists of what to bring, such as headphones, earplugs, or a favorite toy. There were maps to special “break areas,” where people could go if they were overstimulated.
All the basics that most people with autism need.
The tricky part is, James is like most people with autism, in that he’s not like most people with autism. Autism features a wide range of presentations, from severely developmentally delayed people who can’t speak, to college-educated professionals. So each person’s needs are highly specific.
James didn’t need a sensory guide. When it comes to roller coasters, the louder, the flashier, the bumpier, the better. But crowds? Unfamiliar foods? Unexpected closures? Far-away restrooms? Any of these, and especially these in combination, could ruin the trip.
Exhaustive preparation is always my best defense. Disney offers Fast Passes for free to all visitors, not just those with disabilities. They were all we needed (beyond advance dinner reservations and a restriction on overdoing it) for our first two days in the Magic Kingdom. A Fast Pass gives you a generous time window during which to report for a ride, and admits you to a fast-moving line once you show up.
On the first day of our visit, we had a hint of what was to come. We hit Big Thunder Mountain Railroad, our second planned ride, about 45 minutes ahead of our Fast Pass arrival time. I decided we’d wait in the regular line, which looked short to me.
Well, actually James decided. I wanted to use our Disability Access Pass, which we’d obtained within our first 15 minutes at the Magic Kingdom. It would have functioned like a Fast Pass, sparing us some time in line but not swooping us to the front.
“I understand,” the young woman at the desk had murmured before the second half of “High Functioning Autism Spectrum Disorder” was out of my mouth. Then she asked to take James’ picture.
“Mom,” James whined, looking around us. When I’d first mentioned the pass to him, he’d put his foot down. “Disability Pass? No. I don’t need special treatment.”
Cool kid, right?
Before I was James’ mother I was a child psychologist specializing in Autism Spectrum Disorders. I follow my own advice, even though being the mom is nothing like being the psychologist. Instead of supporting James in his attempt to tough it out, I made him get the Disability Access Pass, which afterward he referred to as the Autism Pass.
Any little bit could help.
Back to Big Thunder Mountain. Disney lines snake around, so that you can’t tell you’re near the front until just before you hop on the ride. At precisely the 30-minute mark, James abruptly stepped within a millimeter of the young woman in front of him and growled, “I hate this person. I’m going to push her.”
He didn’t push her. He never planned to. This was just his way of saying he’d had enough waiting. Unfortunately, I could tell by the young woman’s face that he didn’t look at all autistic to her.
He looked like a brat.
Later, I asked James what he would rather be: a brat, or a person with autism?
“I just hated that girl. She was in my way.”
I explained and explained, but in the end he agreed only to this: 30 minutes in line was his limit. For any wait beyond that, we would use the Autism Pass.
Most people are beginning to understand that Autism Spectrum Disorder means different things for different people. What’s less commonly understood is that it means different things for the same person at different times.
Hopping out of the front car of Space Mountain, high-fiving his dad and exclaiming, “That was awesome!” James looks like a typical nine year old. But tack on a few discomforts and uncertainties, and suddenly he’s scratching gashes into his own forearms and yelling, “Put me up for adoption!”
I’d do anything to prevent one of these rare outbursts. As she arranged our Disability Access Pass, the young woman had asked, “Is there anything else I can do for you?”
I said no, because I didn’t know where to start. At the end of our trip, I came up with a wish list:
Like Disney proved in their guide, I know what’s likely to trigger my child with autism. I zero in on these triggers and try to snuff them out completely in the name of family fun.
But spontaneity is also part of the fun. By the third day, even as James’ stress level increased, we both appreciated the pop-up parade, the roaming Tigger, and the Mickey-shaped waffle. We would have missed all of that if I’d been "helped" to everything on my list.
It takes a village!
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