When it’s not okay

Emilyin a quiet moment at home.

The nurse sees me grimace and smiles reassuringly. “It’s okay. My nephew has autism.”

It’s all I can do not to scream at her, but that would definitely make the situation worse. I restrain myself, though I want to shout, “No, it is not okay for my daughter to be yelling and stomping in an Intensive Care Unit!”

We’re in a small hospital in Schenectady, New York, where my partner’s elderly mother is in critical condition. She had a complicated heart surgery earlier today, and she is just recovering consciousness.

My daughter Emily was extremely patient and well-behaved as we sat for hours in the waiting room while the surgeons did their lifesaving work. Emily watched videos on her iPod, listened to music, ate snacks. She has autism and epilepsy, a not uncommon combination, and she has very limited verbal capacity. That being said, Emily is intelligent and sensitive. My daughter is twenty-two years old, though she looks younger.

Because she’d been so patient, when the doctors called the family into the ICU after surgery, I brought Emily along. It seemed reasonable; she’d been so well-behaved — she could certainly handle a quick visit to say hi to Grandma Pat, couldn’t she?

She couldn’t. Maybe it was the late hour. Maybe it was the ICU environment. Maybe it was because, only two months before, she’d seen my own mother in an ICU, where my mother was disoriented, ill, depressed — the last time Emily saw my mother alive. Whatever the reason, today in the ICU, Emily erupts into a full-scale meltdown, yelling at the top of her lungs, stamping her feet, trying to run away.

The ICU nurse pats the air in front of her. “It’s all right.”

No! It’s not all right, and we both know it. Her attempt to normalize or justify my daughter’s behavior is absurd. What about the comfort of Grandma Pat? What about the comfort and safety of the other ICU patients? I lead Emily out as quickly as possible, apologizing left and right as we navigate our way to the exit.

In the corridor outside Intensive Care, we sit on a wooden bench. Now that she’s away from the glare and bustle, my daughter settles down quickly. Emily leans into me, weeping quietly. I hug her, stroke her hair. The hallway is empty. I give my daughter a tissue. We wait while my partner and his sister are briefed on Grandma Pat’s condition by the surgeons. I desperately want to be there, but I can’t. I’m resigned to it; as a special needs parent, I miss a lot of things.

At last, Emily stops crying and starts watching videos again. Now that she’s regained her composure, my thoughts drift back to the ICU nurse who told me it was okay.

What she was really telling me? That she didn’t blame me for my daughter’s behavior? That she empathized with my situation? I can appreciate the sentiment now, with a cooler head. It’s a good thing I didn’t yell at the nurse. Still, her expression of empathy was inappropriate. I wish she hadn’t said it.

This happens every so often. In the grocery store. In a parking lot. At a museum. In a crowded restaurant. Emily does something inappropriate, like bursting into song, yelling, or trying to pick lint off strangers’ clothing — and people respond by claiming that it’s all right. It isn’t. These people who try to be kind do Emily a disservice. They reinforce her inappropriate behavior by saying it’s okay, they don’t mind, etc.

Sometimes if she’s bored or wants attention, Emily does something she knows is inappropriate to get a laugh. Emily loves making people laugh. She’s good at it, too — at my mother’s memorial service, she waited just a beat after we began a moment of silence to loudly announce, “I need bathroom, please!” This got a huge laugh, which was great — but it reinforced the inappropriate behavior. Ten out of ten for style, but minus several million for good thinking.

Here’s a good rule of thumb: if a behavior isn’t appropriate for a neurotypical (not autistic) person of Emily’s age, it’s probably not appropriate for my daughter. To be fair, we have a sliding scale of appropriateness. As long as she’s not being disruptive, eating chicken nuggets with her fingers in a fancy restaurant is acceptable. Tasting the chicken, deciding it’s not up to her standards, and spitting it out? Not acceptable. An impromptu dance at a solemn gathering (true story) is not acceptable. At a happy gathering, go ahead and dance. Just don’t bump into anyone.

These are reasonable guidelines. They vary sometimes depending on circumstance, but for the most part, they’re predictable enough that Emily has a good idea of what she can and can’t do. When she engages in the inappropriate behavior, she’s generally aware that she’s out of line. However, there’s usually a reason behind her behavior. She could be acting out due to boredom, or to avoid doing something she doesn’t want to do, or to attempt to get something she wants. Together, we’ve worked on different strategies to express her preferences, and she’s improved in many ways.

But the truth remains that when others dismiss her behavior, what Emily hears is, “it’s okay to yell in the supermarket,” or “strangers like it when you randomly walk up and pick lint off their sweater.” Even with the best of intentions, messages like this do my daughter a disservice. They confuse the issue for her. Despite their compassion, these people are not helping.

Meltdowns like the one she just had in the ICU are a special kind of inappropriate. The hospital environment isn’t something she’s used to. The bright lights, sounds, and the rush of nurses everywhere are overwhelming for neurotypical folks — how must it feel to Emily? On top of the sensory overload, she’s likely burnt out from the hours of sitting. I reach out and gently stroke her hair as she watches another video here on the bench outside the ICU. She’s doing okay.

Eventually, my partner and his sister meet us in the corridor. It’s been hours since we arrived, and we’re all tired and hungry. Someone suggests we grab a late dinner at a sit-down chain restaurant, one that serves chicken nuggets for Emily. Everyone agrees it’s a good idea.

When we arrive in the restaurant, Emily hangs her coat on the back of her chair, takes a seat, and looks through the menu. She taps my arm. “I want chicken nuggets, please. And ginger ale.” I nod and figure out my own order. When the server arrives, our food and drink orders are placed, and it’s time to get down to business. My partner and his sister begin to explain all they learned from the surgeons in the ICU. They were unable to complete the surgery due to a risky complication. Grandma Pat will remain in the ICU until the surgical team is able to come up with a solution and complete the surgery. What’s the timeline, I ask. “Mommy!” My partner starts to answer, but my daughter interrupts. “Mommy!” She thrusts the iPod into my face, demanding, “What happened?” I explain that the iPod battery is drained. She’ll have to wait until we’re back in the car to charge it.

My partner finishes answering my question. I’d like to follow up, but Emily is tired and cranky, and her food’s not here yet. Without her iPod, there’s very little to distract her from her boredom and exhaustion. Impatient, Emily stomps her feet and engages in loud, inappropriate vocalizations. “No-no-no-no-no!”

I look up at the server who’s just brought our drinks. “Sorry about this,” I say. “We’ve all had a long day.”

“Oh, she’s fine!” the server smiles.

“If you could put a rush on those chicken strips, I’d be grateful.”

“Oh, sure,” says the server, ambling off to the kitchen with no apparent sense of urgency.

Emily calms down a bit when the bread basket arrives, but we can’t let this temporary respite lull us into a sense of false security. Quietly munching on breadsticks for a couple of minutes doesn’t mean the worst is over. I keep glancing over my shoulder toward the kitchen. Our server is leaning against the wall by the kitchen door, doing something on her cell phone.

My partner and his sister continue their conversation. I try to participate, but soon the breadsticks are finished and Emily is no longer pacified. “Bathroom!”

Automatically, I prompt her to use a complete sentence.

Her volume increases with every word: “Mommy, I want bathroom please!” “Please” is shrieked. People turn to look at us. I mouth “sorry” and walk her to the ladies’ room, ignoring the elderly couple at the next table who reassure us that it’s “no bother.” It is a bother, and we all know it.

Bathrooms are usually good for Emily, in that they tend to be small, quiet, private places where she can re-center herself. But in this case, the large chain restaurant lavatory with four stalls and tile everywhere makes a wonderful echo chamber, amplifying every vocalization. She’s glad for the opportunity to sit on the toilet and sing “Fish Heads” at top volume. Because Emily’s not good with locks, I stand outside her stall, holding the door closed and trying not to look like a pervert while my adult daughter trills the lyrics: “They can’t play baseball / they don’t wear sweaters / they’re not good dancers / they don’t play drums! / FISH HEADS, FISH HEADS, ROLY-POLY FISH HEADS! / FISH HEADS, FISH HEADS, EAT THEM UP, YUM!”

As if on cue, a tired-looking woman emerges from another stall.

I cringe. “Sorry.”

She shrugs and smiles. “She has a lovely voice.”

I’m flooded with relief. “Thank you. She does, doesn’t she?”

“She does.”

“FISH HEADS, FISH HEADS, ROLY-POLY FISH HEADS! / FISH HEADS, FISH HEADS, EAT THEM UP, YUM!”

“Autism?”

I nod. “Autism.”

“My son, too. How old is she?”

We talk for a few minutes about our adult children with autism. The woman explains she pegged Emily as autistic as soon as we walked in the restaurant. (Many autism parents develop a kind of “spidey sense” when it comes to recognizing autism.) I explain the situation; the woman and her son have experienced the same kind of incident. Relief flows through my body. No judgment here.

The woman wishes us luck and returns to her booth.

I peek out the door. At our table, my partner and his sister are deep in conversation. We live four hours away from his sister, so they don’t often get a chance to talk like this. The food hasn’t arrived yet. Glancing toward the kitchen door, I see our server is still preoccupied in doing something on her phone.

The chicken strips will come eventually, and we’ll return to the table and finally eat a full meal. Then we’ll get back in the car, where we can charge the iPod and Emily can distract herself again. Out in the dining room, Emily’s self-soothing vocalizations are not okay. But in here, we’re not bothering anybody. In here, it’s okay.

We’ll stay in the bathroom as long as it takes. I ease the door shut and lean against the counter, relaxing at last.


Amy Frushour Kelly is a professional writer and editor in Westbury, New York. Her photography can be seen at www.frushour.org.