One week from Thanksgiving. One week and one day before Black Friday bleeds into Brown Thursday (stores open at 6 pm!). It’s time to bake the bird and then start hauling out the tinsel and garland and strings of lights. Time to dust off bad holiday sweaters, 18 different versions of “Silent Night” on 18 different holiday albums, and family traditions while counting the number of shopping days left. Time to panic about how little time is left to get it all done. Time to bounce between looking forward to so much of it all while wondering at the same time when it will finally be over.
Really not that different from CJ’s point of view, that last part there. He has a special relationship with the holiday season, sort of like when Dumbo had a special relationship with that bottle of champagne and got pink elephants. For us, Christmas is a combination of stress and joy. For CJ, it’s an annual ticket to a roller coaster of sensory overload.
We’ve learned so much over the years…survival techniques that give CJ a fighting chance to enjoy some of the holidays without being buried in stress and confusion. Not everyone around us understands or approves…after all, our traditions are not all “traditional.” Autism can color our family’s red and green another shade entirely at times, and looking at it from the outside in, one might be tempted to write us off as spoiled or frustrated or inept or unpolished or undignified.
So, as CJ’s advocate, translator and shield, I’ve developed my own little holiday tradition. To friends and family each year, I send out a letter from The Other Side. It’s one that’s been posted on sites all over the Internet. I have no idea who wrote it originally, so I can’t give credit, which is a shame, because it’s worth crediting. The letter was an eye opener to me the first time I read it, even though I’m in the thick of things and you’d think I’d get this by osmosis by now. It’s a timely reminder as we go about our business that the holidays are not just a time of giving and receiving, they’re also a time for a little extra patience and understanding.
*************************************************************Dear Family and Friends: I understand that we will be visiting each other for the holidays this year! Sometimes these visits can be very hard for me, but here is some information that might help our visit to be more successful. As you probably know, a hidden disability called autism, or what some people refer to as a Pervasive Developmental Disorder (PDD), challenges me. Autism/PDD is a neurodevelopment disorder, which makes it hard for me to understand the environment around me. I have barriers in my brain that you can’t see, but which make it difficult for me to adapt to my surroundings. Thanksgiving & Christmas are some of the roughest holidays for me. With large crowds and holiday shopping it can be very overwhelming, even a bit scary. When planning a party remember that with my over sensitive hearing and eye sight, Christmas trees and holiday smells can cause me mild to severe pain or discomfort. If the noises are impossible to control a personal stereo with headphones set to a safe level for children may help drown out background noise and ease my discomfort. Sometimes I may seem rude and abrupt, but it is only that because I have to try so hard to understand people and at the same time, make myself understood. People with autism have different abilities: some may not speak, some write beautiful poetry, others are whizzes in math (Albert Einstein was thought to be autistic), or may have difficulty making friends. We are all different and need various degrees of support. Sometimes when I am touched unexpectedly, it might feel painful and make me want to run away. I get easily frustrated too. Being with lots of other people is like standing next to a moving freight train and trying to decide how and when to jump aboard. I feel frightened and confused a lot of the time. This is why I need to have things the same as much as possible. Once I learn how things happen, I can get by okay. But if something, anything, changes, then I have to relearn the situation all over again! It is very hard. When you try to talk to me, I often can’t understand what you say because there is a lot of distraction around. I have to concentrate very hard to hear and understand one thing at a time. You might think I am ignoring you-I am not. Rather, I am hearing everything and not knowing what is most important to respond to. Holidays are exceptionally hard because there are so many different people, places, and things going on that are out of my ordinary realm. This may be fun and adventurous for most people, but for me, it’s very hard work and can be extremely stressful. I often have to get away from all the commotion to calm down. It would be great if you had a private place set up to where I could retreat. If I cannot sit at the meal table, do not think I am misbehaving or that my parents have no control over me. Sitting in one place for even five minutes is often impossible for me. I feel so antsy and overwhelmed by all the smells, sounds, and people–I just have to get up and move about. Please don’t hold up your meal for me–go on without me, and my parents will handle the situation the best way they know how. Eating in general is hard for me. If you understand that autism is a sensory processing disorder, it’s no wonder eating is a problem! Think of all the senses involved with eating. Sight, smell, taste, touch, AND all the complicated mechanics that are involved. Chewing and swallowing is something that a lot of people with autism have trouble with. I am not being picky-I literally cannot eat certain foods as my sensory system and/or oral motor coordination is impaired. Don’t be disappointed if Mom hasn’t dressed me in starch and bows. It’s because she knows how much stiff and frilly clothes can drive me buggy! I have to feel comfortable in my clothes or I will just be miserable. When I go to someone else’s house, I may appear bossy and controlling. In a sense, I am being controlling, because that is how I try to fit into the world around me (which is so hard to figure out!) Things have to be done in a way I am familiar with or else I might get confused and frustrated. It doesn’t mean you have to change the way you are doing things–just please be patient with me, and understanding of how I have to cope. Mom and Dad have no control over how my autism makes me feel inside. People with autism often have little things that they do to help themselves feel more comfortable. The grown-ups call it “self regulation,” or “stimming’. I might rock, hum, flick my fingers, or any number of different things. I am not trying to be disruptive or weird. Again, I am doing what I have to do for my brain to adapt to your world. Sometimes I cannot stop myself from talking, singing, or doing an activity I enjoy. The grown-ups call this “perseverating” which is kind-a-like self-regulation or stimming. I do this only because I have found something to occupy myself that makes me feel comfortable. Perseverative behaviors are good to a certain degree because they help me calm down. Please be respectful to my Mom and Dad if they let me “stim” for a while as they know me best and what helps to calm me. Remember that my Mom and Dad have to watch me much more closely than the average child. This is for my own safety, and preservation of your possessions. It hurts my parents’ feelings to be criticized for being over protective, or condemned for not watching me close enough. They are human and have been given an assignment intended for saints. My parents are good people and need your support. Holidays are filled with sights, sounds, and smells. The average household is turned into a busy, frantic, festive place. Remember that this may be fun for you, but it’s very hard work for me to conform. If I fall apart or act out in a way that you consider socially inappropriate, please remember that I don’t possess the neurological system that is required to follow some social rules. I am a unique person–an interesting person. I will find my place at this celebration that is comfortable for us all, as long as you’ll try to view the world through my eyes! **********************************************
This letter has changed our lives over the years. I hope it will make your holidays just a little smoother as you hit the stores and parties.