By: Cristina Gaudio, NCSA Legal and Policy Fellow
Last week, I sat my brother down for a conversation that I have been delaying for quite some time. The topic? Santa Claus.
I am lucky to be able to say that my level-two autistic brother is verbal. Although his words do not always make sense, and although he frequently echoes, vocalizes, and thinks in ways that are extremely juvenile for his age, he has always been able to grasp the concept of Santa Claus. He does not just understand Santa Claus—he believes in him with every fiber of his innocent soul.
I am all for holiday cheer, but as they say, too much of anything is bad. As he has gotten older and entered his late teenage years, he has increasingly become fixated on holidays to a degree that is problematic for his emotional and behavioral health. Indeed, he will begin stressing, worrying, and obsessing over holidays months in advance. He fixates on everything—procuring decorations, arranging lights, purchasing lawn signs, and buying outfits, to name a few—until he is locked into a mental loop he is unable to escape. From there, cue the cycle of meltdowns, hyperfocus, and emotional distress for him and those around him, who, like me, try to no avail to impart flexibility in his thinking and break the obsessive loop.
While these behaviors have marginally improved over the years through ABA therapy, family patience, and intensive behavioral supports, they are still far from what is neurotypical for a 19-year-old young man. And this is only the beginning. The distress intensifies once the holiday actually arrives.
For autism families, especially those more severely affected than mine, ’tis the season of incredible isolation.
Lights flicker, music blares, crowds press in, and routines disappear. What is fun and festive for the average family demands constant regulation from us, as we cross our fingers and hold our breath that our loved ones, who cannot filter sensory input or flexibly adjust expectations, will hold it together. Truthfully, the holidays often feel like a different task altogether: preventing escalation in an environment designed to provoke it. If you know, you know.
Christmas is just one big balancing act. Every choice is a negotiation between developmental reality and societal expectation, between meeting my brother where he is mentally and acknowledging his actual age. Take gift-giving, for instance. I know all the right things to say—that age is just a number, that his happiness is all that should matter, that comparison does no good. I also, however, will not pretend that any amount of forced acceptance erases the bittersweet pain of the process itself. Standing in the Target baby aisle, holding a stuffed animal marked “ages 2+,” I cannot help but remember where I was at nineteen—a first-year undergraduate at the University of Chicago, applying for internships, dating my current boyfriend, excited for the future ahead. These moments remind me of the ever-widening gap between what is and what should be.
I buy the stuffed animal anyway, because it brings him joy. But I also buy something I would have enjoyed at his age, like a Nike backpack. Not because he will enjoy it (because he won’t), and not because I do not accept him for who he is (don’t even go there), but because it somehow feels like the right thing to do. You could say that gift is more for me than for him, and maybe it is. I know my sibling experience is different from that of a parent. But to all autism family members standing in that same aisle, quietly doing their own emotional calculus, I see you.
I uphold this fragile balance again when we make Christmas cookies. Carefully, diligently, like a good sister, I cut and bake two dozen perfectly shaped sugar cookies, lay them out with tubes of frosting (no sprinkles, because I have learned the hard way that he will dump them out), and watch as he decorates them with a wide grin. For a moment, it feels like the version of the holidays I have always hoped for: calm, shared, joyful. And then the bubble bursts when I turn around and catch him eating frosting straight from the tubes—tubes he has dug out of the bottom of the trash—unable to resist the texture and taste of the thick, sugary paste. The careful balance collapses again. At least I tried.
To those who keep trying, year after year, I understand you.
Santa Claus, in our home, is the latest version of this same negotiation. I would never willingly infantilize my brother. I am also not some Grinch, ready to swoop in and squash the nineteen years of joy, magic, and—yes—unhealthy obsession that Santa has brought him over the years. But all good things must come to an end, and by now, I know I must prepare him for the world and ease him into the truth for his own good. In recent years, I have pushed this conversation off. Now, reinforcing a childhood fantasy is no longer harmless, and for his own awareness of the world, he must know.
So I did the best I could. Santa does not come anymore once you turn nineteen, I said, because at a certain age you simply, um, age off of his list. He’s busy, after all. Was it perfect? No. Was it the right thing to do? I honestly do not know. But in my mind, my approach respected his reality and preserved his joy without continuing to fuel something that might be keeping him in a childlike state. To all who have wrestled with this same question, I hear you.
So there you have it, bits and pieces of my autism family Christmas. When the day comes, I hope it is peaceful. I hope it is not overwhelming; that he can enjoy the food; that his nervous gag reflex stays at bay; and that the younger kids are kind to him. I hope there are more moments of calm than crisis, more smiles than inappropriate, impulsive behaviors. I hope he continues to progress, whatever that means for him. And of course, I have a few wishes for myself: that I continue learning how to support him without losing myself in the process. And that one day, when I am older and able to buy a home of my own, I might host a holiday. I have always dreamed of hosting, because growing up with an autistic sibling, we never could. These hopes are modest, but they are hard-won.
Until then, I will keep showing up, recalibrating, and holding the balance, however imperfectly, trusting that my intentions are grounded in love. To those facing an autism Christmas—siblings, parents, grandparents, caregivers—I see you.
There are no perfect answers here, only good-faith efforts made again and again.
To all in our community: Merry Christmas, happy holidays, and Godspeed. We are doing the best that we can.
Author’s Note:
Cristina Gaudio is the Legal Policy and Advocacy Fellow at the National Council on Severe Autism. A JD/MPP candidate at Vanderbilt University and a proud autism sibling, Cristina is dedicated to advancing evidence-based policies that support individuals with severe and profound autism. Her work focuses on Medicaid reform, housing access, and meaningful services for profoundly affected individuals. She also serves as a U.S. Air Force Reserve Officer.