Where Should Special Needs Kids Be Special?
Tricky questions about how to share public spaces.
What are reasonable expectations of behavior in public places?
Photo by Johan Ordoñez/AFP/Getty Images
Earlier this year, I was out to dinner with a friend and our combined eight kids. My 14-year-old son, Jonah, who has autism, was very excited about the imminent arrival of his hamburger and french fries, so he was acting as he does when he’s happy: bouncing in his seat, clapping his hands, and vocalizing a mishmash of squawks and catchphrases from his favorite Sesame Street videos. He wasn’t exceedingly loud, but the oddness of his behavior had clearly caught the attention of an older gentleman at the one other table occupied at that early hour.
“Shhhhhhh,” he hissed from across the room.
Everyone at the table instantly froze—except, of course, for Jonah. “I’m sorry,” I explained, rising from my seat and taking a few steps toward him so I wouldn’t have to holler. “My son is autistic … ”
“Oh, sorry,” he said.
“He’s not trying to disturb you intentionally … ”
“I heard you the first time,” he snapped.
My face burned as I returned to my seat, his gratuitous nastiness instantly draining the joy from my evening. I spent the rest of the dinner constantly shushing Jonah, even though we had specifically decided to eat out at 6 on a Thursday night in a casual eatery so we wouldn’t have to hold any of the kids to impossible standards of behavior.
It turns out my friend and I weren’t the only ones who have been discussing the rights of disabled individuals in the community, the responsibilities of their families, and the expectations of the public, as we did that evening. Two recent high-profile incidents focused the nation’s attention on this very issue.
First, Whole Foods faced the ire of the autism community after a contracted security guard at a Milwaukee grocery allegedly told the sister of a 26-year-old autistic man who had taken some food from the hot bar that “he needed to get out of the store and not come back unless he was on a leash.” Although the guard resigned, Whole Foods apologized, and sensitivity training was arranged for the entire staff, a spokesperson gently pointed out this wasn’t the first time Michael Goldman had helped himself from the prepared trays. Even if his sister paid for the food, as she offered to do, it’s unclear what expenses the store might have had to absorb if Goldman had used his hands, contaminating the entire tray. As the parent of an autistic teen who is also a threat to snatch food, I wondered along with many others why his sister hadn’t been glued to his side—or even, as I would have been, physically guiding him by the arm or shoulder—in such a tempting environment.
The next week, Michael Garcia, a waiter at a Houston restaurant called Lorenzo’s, received mass acclaim after refusing to serve a family who changed tables to get away from a 5-year-old with Down syndrome. The customer allegedly complained to Garcia that “special needs children need to be special somewhere else.”
To sum up the fallout from these incidents: It’s not OK to be offended by the sight of disabled people in the community or to insult them or their family members. However, neither is it OK for anyone, disabled or not, to engage in dangerous, illegal, and/or unsanitary behaviors.
Pretty broad parameters, no doubt, but hopefully ones we can all agree on.
Where it gets tricky is in the middle. What are reasonable expectations of behavior in public places? Like many autistic individuals, Jonah is virtually incapable of doing anything quietly. He has been scowled at on airplanes, in movie theaters, in restaurants, and in bookstores. And I get it—I prefer a quiet airplane ride as much as the next person. But what I keep coming back to is that community, by definition, is inclusive. Ideally, our public spaces should accommodate everyone. Which means that expecting kids like Jonah to just stay home isn’t reasonable. Nor should we think of this issue in terms of what discomfort or awkwardness people without disabilities are willing to tolerate, because that suggests a troubling hierarchy of privilege. Instead, we need to ask ourselves how best to share our common facilities.
As anyone who’s ever parented young children knows, there are two ways of sharing: taking turns or using something together. Turn-taking seems to be particularly in vogue of late, at least when it comes to autistic people in the community: Zoos, amusement parks, bowling alleys, roller skating rinks, movie theaters and purveyors of just about any type of entertainment imaginable are setting aside time particularly for individuals with autism and their families. These are fabulous programs that allow autistic children to have fun and try new activities. They also take the pressure off parents, who don’t have to worry their kids are being too loud or just too weird—because I think it’s often the strangeness of autistic behavior that disturbs people, not simply the volume. My four younger kids have done their share of enthusiastic joking and singing in restaurants and other public spaces, but no one has questioned the appropriateness of their presence as some have done after observing Jonah chant, “Mommy Aunt Keri with a Daddy song” while wiggling his fingers in front of his face until he goes cross-eyed.
There’s no question that separation makes things easier for everyone. After another older patron at the same establishment complained on a different night about Jonah watching his touch-screen device while waiting for his dinner, we permanently moved our group into a party room apart from the main dining room. I’m finally able to relax—we don’t have to make Jonah stay in his seat or constantly remind the seven other kids to use their “indoor voices.” Philosophically, however, it bothers me: What are my children, and my friend’s children, learning about the place of the disabled in the community? Will they grow up thinking it’s perfectly natural for people like Jonah to literally be shunted into a back room?
So I guess I prefer the messier way of sharing, where everyone’s in it together. This is typically what occurs, and typically it works out: We, the parents of potentially disruptive kids like Jonah, generally don’t take them to the ballet or other live performances that require quiet audiences. We take them to movies that have already been out for weeks, and we go at off times. Instead of going to the Four Seasons on Valentine’s Day, we take them to family-friendly restaurants where, honestly, it’s unreasonable for anyone to expect much ambience.
And most people are pretty accepting. They’re busy with their own affairs, for the most part. Even if they do notice us, they know it’s rude to stare, and I’ve actually caught several parents surreptitiously using us as a teaching moment to explain to their kids why they shouldn’t point. When Jonah bumps into strangers while he’s spinning, they usually accept our apologies and move on without making a big deal out of it. While there are obviously still those who feel that autistic children belong “on a leash,” I think there are more who want to help—people who let us step in front of them in line at Wendy’s, for example, because they know that waiting can be extremely difficult for kids in this population. And I have to say, there’s no charitable gesture I can think of that beats, in terms of pure value, letting a family with a child with autism or a similar disability cut in line. It costs only a few minutes of your time, but it can make a tremendous difference for that family, who may have been forced to leave—without their lunch, or their groceries, or even their turn down the waterslide—because of their child’s increasing agitation.
When the public routinely encounters disabled individuals in the community—sees them running the same errands, enjoying the same activities, and yes, even struggling with things that come easily for others, you get the level of compassion shown in an April 2012 segment of ABC’s “What Would You Do?” In the hidden-camera video, patrons of a New Jersey restaurant universally supported the family of an autistic teen (all played by actors) against a single diner (also an actor) who was offended by the teenager’s disruptive behavior. What had me sobbing in front of my computer was that even when the actor playing the autistic boy actually snatched french fries off the man’s plate, the other diners rallied behind the family, comforted the parents, and applauded when the man stormed out.
I don’t expect that much acceptance. But I think we can do better than “I heard you the first time.”
Amy S.F. Lutz writes about autism and other issues she's encountered as the mother of five children. Her book on pediatric ECT will be published in 2014. She is president of EASI Foundation: Ending Aggression and Self-Injury in the Developmentally Disabled, and can be reached at firstname.lastname@example.org.