This time of year, there are many articles written on how to make the winter holidays autism friendly. But this becomes difficult for families who don’t want to let go of long standing family traditions that seem less autism friendly. As someone with autism, I certainly don’t want my presence to force others to let go of meaningful moments entirely. While I appreciate that our society is so much more open to accommodating my autism, I also want to challenge myself.
While there are places in my life that I need full accommodations, having the opportunity to grow is a huge piece of presuming competence. If you presume I am able to succeed, then you must also presume that I am able to learn from my failures and grow. Before I talk more about the holidays, allow me to give you a little background on how I see my autism.
How I see my autism
Autism is not this static state where I am forever unchanging. Rather, Autism is a roommate in my mind who resides with a fully formed personality – the individual me, independent of autism who is expressed through a dance between my problem solving self, Snamuh (sna-moo), and my emotional self, Phoenix.
Phoenix often causes disruptions for me that I may not be able to predict. Through practice over my 45 years of life, I have learned to better predict her. Still, she can set fire to some awesome moments, sending me fleeing to a safe space until she cools down. Because Phoenix embodies my emotional state, my feelings can often be mislabeled or misunderstood by my autism.
Snamuh (humans spelled backward) is a key piece of my personality. Even without autism, I see myself as an odd ball, slightly out of step with my peers. Despite being out of step, Snamuh provides me a unique perspective to help me problem solve, and to be a supportive member of the village.
Snamuh and Phoenix have learned to work together, providing me a well-rounded experience of life. Autism is in control of my nervous system, allowing me to fully feel Phoenix, like heat radiating from the sun within my core. But, autism can also cause a disruption between what Phoenix is feeling and what Snamuh is calculating. These disruptions are what lead to meltdowns.
A meltdown is my least favourite aspect of being autistic. Once it starts, I have little control over stopping it without an immediate venue change. If I have nowhere to go to breathe, or ground my nerves, I fold into myself. When they get really bad, I can’t even speak. Since I have such little control once a meltdown starts, I have focused my energy on preventative care. I do this by managing my small daytime stresors, and finding balance through challenging exercises that increase neuroplasticity.
Now that you know me a little more, let’s get back to the winter holidays. I actually love the Christmas season. I love the trees, and the lights, and giving gifts to my family and friends. I love listening to people reminisce over holiday meals and all of the holidays treats. Most of all, I love playing music that brings people together to song, people who might not cross paths otherwise.
As a child, I did resist walking up to Santa (expressed as shyness, as girls on the spectrum often mask with),and felt vibrations all over my bones when in the parade crowds. I really wanted to enjoy it, my body just recoiled.
Mom and dad would lead me by holding my hand, tugging now and again when I had trouble moving. No one knew I had autism then, they just thought I was being overly cautious or shy, and sometimes just being stubborn. To this day, my family is often surprised to hear about what I enjoy as an adult, because I was so resistant to these experiences as a child. It was expressed as resistance, but it actually was autism causing a communication delay between Phoenix and Snamuh.
In a way, I think not knowing I had autism gave people the courage to challenge me to grow in ways they may have avoided with a diagnosis. I was gently placed outside my comfort zone until we could find a middle ground the entire family could live with. May times, I was able to join my family in full capacity and enjoy some family traditions.
Timing is everything and every child with autism is different, but we can’t be afraid as teachers, parents, and village members to help Autistic people challenge ourselves for positive growth. Neurotypical people are our sidekicks. As your autistic loved one works on their personal journey, here are some holiday specific insights that might help you.
Christmas Trees I was not scent sensitive as a child, at least not against nature. I loved the smell of the tree. However, picking out a tree in a crowded, cold nursery was miserable. The tress tied up and laying in piles, the chainsaws, and the new faces approaching us was exhausting.
One way I worked on my ability to tolerate this started with these compromises that I took away a little at a time: 1) Go at less busy times 2) Ask the manager to have the full attention of one person for the tree buying experience (but be prepared to tip them well) 3) Make this a standalone visit to pick up ONLY a tree. Save your other shopping for another trip, even it if is more convenient to do it all in one trip. 4) Go to the same place every year.
Each year I felt ready for growth, I changed one parameter. The only accommodation I need now is to go at less busy times.
Holiday Light Shows
Holiday lights are fun and beautiful, but lights have changed over the past decade. As we move to LED lights, many autistic people are put off by the flicker. Yes, LED lights in our homes flicker less, but cheap holiday lights flicker so badly it is painful to look at. I personally use LED lights in my home,but incandescent Christmas tree lights.
This is a sensory issue that is more difficult to change, but it doesn’t mean the family can’t enjoy it. Here are some things I find helpful:
1) Go to light shows at dusk rather than after dark. This helps minimize the contrast and therefore the flicker. 2) See if the venue will allow you re-entry privileges on a single visit. Being able to see the lights with 10 minute breaks inbetween might make it more tolerable. Being able to stay for a long time is something I call autistic stamina. There is no shortcut to building this. Try adding 10% more time each visit, if you can. 3) Bring sunglass, a hat with a brim, and headphones. Yes, headphones. Sometimes I find if I can’t control the light, controlling the sound to my ears helps me reallocate mental resources to tolerating the light show.
I was lucky to visit the same Santa every year. This Santa’s helper took kids wishes to the big man at the north pole for 20 plus years, so it got easier each year for me to see him. But even with familiarality, I would shy away as my turn approached. My mother would have to help me make the last few steps. Here is what I think can help:
1) If you can’t find the same Santa, at least go to the same location. 2) Standing in queue is super hard when you are regulating excitement in public. Some places allow for appointments. If appointments aren’t available, ask employees to tell you what times are typically slow. 3) DO NOT FORCE THE KID. Kids, and especially autistic kids, feel the energetic presence of others very strongly. If the kid is strongly resistant, it may be that is not the Santa’s helper for you. 4) If a mall Santa is not in the cards, ask a member of your trusted community to dawn the Santa suit for a photo. If you think the child will figure it out, just be honest with them. Let them know you wanted a holiday picture and then mail the list to Santa.(My neighbour visited in the red and white velvet suit as Santa’s helper for years. My kids never figured it out and LOVED when he came by our house for a visit)
Family Meals and Get Togethers
This is the hardest one to navigate and is likely where you must make the most compromises, but it is also a chance for challenges while with people who love us. I was well into adulthood before I could even imagine taking on food challenges, but I have many memories of singing, opening gifts, and even waking up to Teddy Ruxpin singing ti me from the base of the staircase.
For my autistic son, it was a little different. Every year, I made chicken nuggets for him and then let him play quietly while the rest of us ate. This gave him the energy to participate in the gift exchange. I made the compromise over food and he put his energy into staying for the gift exchange.
Food is such a high sensory experience that increasing food tolerance is a task better accomplished in small steps at home. If you really want us to experience a food item, here are some possible steps you can take, even if it is over several years: 1) Touch the food. No smelling, tasting or eating required. 2) Smell the food. Still no eating required. Just allow the smell to connect with the positive data from touching it. 3) Tongue touch the food. Allow us to just put our tongue on it without taking a bite.. 4) Taking a bite – Take a bite but have a place to spit it out. No requirement to chew or swallow it. This is a big step and if too much aversion was expressed in the first three steps, they just might not like it. Personal preference should be allowed. 5) If you made it to take a bite, its likely chewing and swallowing it will likely follow.
You might have to prioritize what seems most important in family traditions so that we autistic people don’t feel left out, but also don’t feel forced. As a parent of an autistic kid, I know the energy this takes from parents, but try and picture the long game through positive growth.
My autistic son now fully participates in family holidays. When he feels overstimulated, he tucks himself away in a quiet space, but then reemerges for more fun. While he will likely never eat my moms Cornish game hens, his memories of Christmases past are overall positive. He wasn’t left in isolation, nor was he forced to grow faster than he could. My son and I both were given ample opportunities to grow, without being shamed. As a result, even Toronto’s Christmas Market is a joy for us.
I wish you and your family a Happy Holiday. Though my experience growing up was with Christmas, I hope this insight can help families navigate any type of celebration. If you are seeking some advice, please feel free to reach out to me and I will do my best to reply.