Parents who raise kids on the spectrum learn early on what causes their sons and daughters to meltdown. Whether the trigger is loud noise, bright lights, clothing tags, or fear of elevators, families need an effective game plan to deal with the autism meltdowns provoked by sensory overloads. Sometimes maturity can help a child with autism outgrow certain triggers. Although warm and affectionate, our daughter Samantha hated holding hands as a little girl. She resented being “treated like a baby,” and feeling “controlled” even when she was seven-years-old, crossing the street in New York City! The safety reasons that made sense to her twin brother were not convincing to her. For many years, Samantha refused to understand that hand-holding was also a gesture of affection. Today at 26 she happily holds hands with her boyfriend. But in the bad old days, our daughter either tried to yank her hand away, or she just went limp like a rag doll, collapsing onto the sidewalk screaming. Clearly, we needed an alternative for both her safety and our family’s sanity.
Solving the hand-holding battle with Samantha turned out to be relatively easy. We negotiated crossing the street with our arms draped around each other’s waists or arm-in-arm like buddies. Unlike hand-holding, Samantha enjoyed these alternatives which made her feel more in control. The take-away is: try to understand WHY you child is triggered and address that underlying issue. For Samantha, the underlying issue was control, not touch.
Fear of riding the left elevator in our apartment building (instead of her “favorite” one on the right) was a chronic problem for four years. We couldn’t always indulge her elevator preference because she couldn’t miss the school bus or be late for appointments. Samantha also had to learn that tenants moved in and out, garbage needed to be removed, and she had to take the elevator that arrived first. For years, we suffered the embarrassment of our neighbors watching her stare up at the elevator light repeatedly yelling: “I WANT MY FAVORITE. THIS ONE IS NOT MY FAVORITE!” It seemed like eons before she was able to accommodate to the reality that no one gets their favorite elevator (or anything else in life) all the time. These days Samantha is too busy texting or chatting on her cell phone to notice which elevator arrives. But there’s a boy on the spectrum who lives on the 16th floor in our building—now a towering adolescent—who is terrified of both elevators. What’s his mother’s solution? He enters the elevator with his hands on her shoulders and stands behind her, pressed against the back of the elevator, relatively calm.
Sometimes it’s possible to prevent a meltdown by skipping stressful situations altogether. If your child is sensitive to loud noises, vacuum during school hours, walk a block out of your way to avoid drilling at a construction site, and try to eat at restaurants that aren’t crowded and busy. When buying clothing, choose brands without irritating tags and labels, or cut them out before your child wears them. (The trick is to persuade your child not to rip out tags when trying on clothing before you pay for it….) With Samantha that sometimes meant trying on a shirt or dress on top of her clothing, and promising her that she could have the fun of ripping the price tag off as soon as we knew we were buying it. Happily, the GAP and other stores began selling tee shirts and dresses with labels and sizes printed on the fabric instead of on irritating labels, so this became much less of a problem.
Preparation – One Failed Plan Can Lead to Future Success
Sometimes parents can prepare kids on the spectrum for a stressful situations—such as travel, disruption of routine, airport security—by telling kids what to expect in advance. Samantha knows she must submit to authority figures in airports who open her purse, pat down her body, or ask her to enter a cubicle for a body scan. It doesn’t matter whether she likes these procedures. (No one does.) We have explained that these rules are for EVERYONE’s safety, and going on vacation is a simple ABA (Applied Behavioral Analysis) choice: Follow the rules and go on vacation or stay home.
Of course, sometimes it’s not possible to plan for every contingency. Who knew that Samantha would be forbidden to take her precious green apple on the airplane when flying between islands in Hawaii? Airport personnel told her to throw away the apple or eat it before boarding the plane. Samantha did not like or understand the rule against transporting fruits and vegetables between islands. Although I explained this rule prevented the spread of disease, she became quite agitated. With great difficulty, I persuaded her to walk away, eat the apple and let me explain everything later. The new-and-improved plan for our next vacation is to cooperate no matter what. Saying “Shush,” or asking my daughter to be quiet has the opposite effect. (Think volcanic explosion. More on that later). So what’s our plan for the next time an unpredictable situation occurs with authority figures and we need her to be quiet—and immediately—cooperate? Samantha and I collaborated on an acceptable hand signal, the silent version of “Cut!”: a slashing hand signal to the throat. This agreement works because we devised to it together and she wouldn’t feel publicly infantilized or demeaned.
Learning Voice Modulation
Speaking too loudly is often a problem for people on the spectrum, Samantha included. To address this issue, parents must role model appropriate calm tones. Even or especially during a meltdown, parents need to keep their own voices down, no matter the provocation. Try not to let the argument escalate. Staying calm can be an art form. I always tell Samantha that she’s hurting my ears because that’s direct feedback and it’s true. I suggest she imitate my tone instead and “keep it classy.” I also remind her that if she screams, she’ll lose her audience. As an actress and singer, that’s the last thing she wants. Sometimes it works if I tell her to “save the drama for the stage.” If we’re on a bus or subway and she’s talking too loudly, a simple hand signal will help her take it down a notch. I lower both hands slowly in front of me, as if gently pushing down.
Nowadays, helping Samantha is collaborative process. Sometimes we still walk a rocky road, but as Samantha likes to say life is “a work in progress”
Marguerite Elisofon and I’m the author of a memoir called My Picture Perfect Family: What Happens When One Twin Has Autism, which explores my family’s journey raising my daughter, Samantha, who is on the autistic spectrum. http://www.margueriteelisofon.com/
My daughter, Samantha, is starring in a groundbreaking new feature film that has been selected to premiere at the Tribeca Film Festival this weekend. The film is called, Keep the Change, and it features a New York love story between two young adults on the autistic spectrum. What makes the film so unique is that the actors portraying characters with autism are themselves on the spectrum, making Keep the Change the first film of its kind. This movie represents a great opportunity—not only for Samantha and the other actors in the film—but for all young adults on the spectrum who have big dreams! You can learn more about Samantha on her website.