12.24.12

Autistic Holidays: How to Make It Easier for Everyone

It’s a difficult time of year for kids on the autism spectrum. From coping with unfamiliar situations to the minefield of toys, a parent’s tips for navigating the season.

With the holiday season upon us, along with joy and festive cheer come increased stress, anxiety, and a sense of overload. And for children on the autism spectrum, the holiday season can be an especially challenging time: a deluge of confusing and aversive stimuli, oppressive expectations, and exhausting demands.

Children who have difficulty sitting still or staying quiet for long stretches of time must make it through religious services, pageants, and holiday shows. Typical holiday stressors—long lines in airports, malls packed with people, the din of seasonal parties—are felt much more acutely by autistic children, and their sensory sensitivities make taking holiday photos, eating holiday delicacies, even wearing special holiday clothing unpleasant if not impossible. Aspects of the season considered exciting, even magical—a display of lights, a group of carolers at the door—can deeply upset a child on the spectrum.

Once school vacation begins, it’s harder to keep routines in place, and the comforting structure of school and therapy sessions disappears. Long plane and car trips and sleeping in unfamiliar surroundings are exponentially more difficult for children with autism, who need frequent movement breaks and often rely on elaborate bedtime rituals. Meals can be a particular source of stress: many autistic children are finicky eaters and miss the reliability of their standard menu, while others have special diets that preclude eating the treats the hosts are serving.

Then there are the increased social demands—described variously by three moms on my Facebook page as “everyone trying to hug and/or kiss him”; “dealing with relatives she hardly knows”; “being carted from house to house visiting all the family—it’s hard enough for a typical child!” Another recounted her son’s struggle in “trying to have an appropriate response instead of a one-word answer and downcast eyes or moving away out of nervousness.” For children who are touch-averse, a simple pat on the head, ruffle of the hair, or slap on the back, let alone a hug, can be excruciating, and well-meaning relatives or friends who don’t see the child often can unwittingly set off meltdowns.

Gifts are another minefield. Children with autism often don’t like conventional toys, and any gifts that make sounds, flash lights, move, or behave in other unpredictable ways can be deeply distressing to a child on the spectrum (a talking robot one Christmas sent my autistic son, Benj, into a panic, much to the chagrin of the well-intentioned gift-giver). Verbal children with autism can be blunt and tactless, loudly declaring: “I don’t like this present” or blurting out in the giver’s hearing: “this isn’t what I wanted.”

Given the cacophony of sounds, the emotional intensity of those around them, the flood of novelty, the chaos and upheaval of travel and parties, it’s no wonder that children who prefer predictability, quiet, and order are overwhelmed!

And for parents of autistic children, too, the season can be fraught: the typical range of challenges—feelings of disappointment, loneliness, and anxiety—is heightened during the holidays. The extent of a child’s difference can become painfully apparent when compared to neuro-typical relatives or friends. Parents can’t attend events they’d dreamed of taking their children to (for me, the Macy’s Thanksgiving Day Parade and the Nutcracker at Lincoln Center) due to their child’s sensitivities. At events they do attend, parents must remain ever vigilant for possible overstimulation and overreaction. In a season that emphasizes togetherness and connection, parents of noncommunicative autistic children can feel all the more alienated and cut off. Many parents mentioned their sadness about their child’s not enjoying the holiday as much as they did when they were children, or not being able to understand the holiday’s spiritual significance. One parent on my Facebook page gently advises others: “We should always remember to not be disappointed if they don’t want to participate in something we thought they’d like … though that’s a year-round occurrence.”

These challenges are exacerbated during the holidays, but there are many things we can do to ease the tensions. In the first place, it pays to be even more proactive than usual. Prepare yourself and your child ahead of time by acknowledging the special difficulties that accompany the special joys of the season. It’s a tough spot: the very time that we’re all expected to be on our very best behavior is just that time when doing so is most difficult for challenged kids. So start by recalibrating your own, perhaps subconscious, expectations. Don’t pin your hopes on everything going perfectly, and be determined to give yourself a break when it doesn’t. Then you can carry this attitude into concrete steps to build flexibility into the holiday celebrations.

Insulated against superficial worries, families of children with autism can focus instead on the true values of the season: compassion, acceptance, generosity of spirit.

Don’t insist that your child sit at the table for the entire meal or participate in every last aspect of the day, eat the feast, wear special clothes that might itch or irritate him. Allow your child to leave the main gathering space and go off to a quiet spot where he can escape the demands of socializing and decompress. Try to have the main gathering in a familiar place that the child visits often.

If you do go to parties or religious services, get there early before a crowd has gathered and the noise has risen and find the calmest and least conspicuous spot in the space, with easy access to a door or another room. Find a relatively peaceful place where the child can retreat if the noise and hullabaloo get to be too much. Allow your child time to acclimate to the space. Use noise-dampening headphones. Bring your own food (we always send Benj with a special gluten- and dairy-free chocolate cookie).

Be selective about the invitations you accept. Avoid events and groups with rigid behavioral expectations: a church whose congregants would stare disapprovingly at a child who asked questions or sang very loudly, a gathering where everyone was required to wear a jacket and tie or to talk in hushed tones. Seek out places that make your child and your family feel welcome and spend time with people who are accepting, understanding, and nonjudgmental.

Avoid ruffled feathers and hurt feelings on the part of the gift-giver and anxiety or fear on the part of the gift-receiver by actively curating a wish list. During present-opening time, allow the child to open an especially enticing gift early on or give her a structured task: since the age of 2, hyperlexic Benj has been the designated present-giver—he loves to read the cards and hand out the presents. One mom has another ingenious solution: “we have a special arrangement with Santa that he comes on the night of the 23rd. That way there’s time to play with presents before going to activities on Christmas Day.” Another parent told me: “gift-giving in advance... alleviates so much anxiety about overload on Christmas morning (for everyone—including our son). Then we all have the energy for family gatherings later in the day.”

This mother points to a general truth about the suggestions offered above—they really are useful for all of us. In particular, easing up on rigid demands and expectations benefits everyone. Does it really matter if our children wear the “nicest” outfit, if we choose the perfect gift, have the best decorations, or cook the most scrumptious dessert? Insulated against superficial worries, families of children with autism can focus instead on the true values of the season: compassion, acceptance, generosity of spirit.

It’s also helpful to remember that over time, autistic children can often become especially passionate celebrators of the holidays. Once a child has been through several holiday seasons, the changes themselves become predictable. Rituals may offer appealing structure to children who thrive on order and routine. One mother told me: “My autistic daughter positively basks in the traditions,” and another wrote that her son with autism is the menorah’s most faithful tender. Listening to Benj happily bang out “Joy to the World” on his piano keyboard or huskily sing a poignant version of “The First Noel” is one of the great pleasures of the holiday season for me.

We should also never forget that the holidays can be a time to celebrate little victories and milestones. For our family: the first time Benj greeted a visitor with a hearty “Merry Christmas!” The first Christmas he said a heartfelt “thank you” when he got a gift he enjoyed. The first time he was able to attend Christmas Eve church service and sit relatively still (the following year, he was the most attentive and rapturous member of our family group). Watching How the Grinch Stole Christmas, when almost-4-year-old Benj, not yet able to have any conversational exchange, reached out to hold my hand just like the Whos. “Christmas Day is in our grasp, so long as we have hands to clasp.”