Christmas, it’s the most wonderful time of the year, right? Yes, it truly is, but for those families living on the spectrum, it’s not necessarily an easy one. That may be the case for many of us depending on our life situations, whether it’s grieving over loved ones lost over the previous year or changed relationships, struggling financially or emotionally over job changes or other life changes such as children in college or any number of events which alter life as we know it.
Spectrum families often need to ease into the holidays to help their loved one deal with all the changes: different decorations in the house, twinkling lights can be physically painful for those with a visual aversion, for some, they can even tip off seizure activity; different songs, coupled with raucous laughter can be overwhelming for the one who is effected by sound; even different smells from all the goodies which are baking can be overwhelming for the one who struggles with sensory overload. And then to see a tree with gifts, but not being able to open them, even though your birthday was just a few weeks ago, so you think they must be your birthday gifts, well, that hardly seems anything but fair. But with gentle understanding and compassion, we are blessed that this can be a time our family can very much enjoy, struggles and all.
If you’re blessed to share your holidays with someone on the spectrum, won’t you please consider the ideas presented in this open letter to family and friends, written by professionals, from the perspective of a child with autism:
A Letter to My Family & Friends
While visiting with family and friends should be a happy time, it can be very, very hard for me. Why? I have autism; this is a lifelong developmental disability that affects how my brain functions. I am not “bad;” I am not misbehaving. I am not intentionally trying to get away with something. I am communicating within my environment in the only way I know how. Words do not come easy for me; listening to everyone talk is like being in a foreign country with no interpreter to help me with the language. So I “talk” through my actions.
I smile or laugh when I am happy. I may also smile and laugh when I am nervous, because my emotions are hard for me to understand and control. I yell and cry when I am upset. I may also scratch or pinch, because this is how I let people know I want them to back off, or how I say “I don’t like that!” I throw things because I like to watch them drop, and I like to watch other people pick them up. Since I have trouble knowing what you’re saying, I watch your face, and when your face turns red or your eyes squint when you’re angry, that is interesting to me, because your face changed. I don’t know “angry;” I know that things I look at can change in shape or color or size or direction, and that is interesting when sight is my best sense.
Telling me to “stop” or “don’t” doesn’t help. I already know what NOT to do; tell me what TO do instead. “Feet stay on the floor” is better than “stop climbing.” “Hands stay to yourself” is better than “don’t hit.” “Quiet voice” tells me what to do; “you’re too loud” doesn’t. Even if I can talk in sentences, I may lose the ability to understand speech as my anxiety increases. Just like everybody else, the more nervous I get, the less words I can find.
I have trouble taking everything in at the same time. I hear everything; I see everything; I smell everything; I feel everything. I cannot filter out what is unnecessary, because I don’t know what exactly is necessary. So everything comes in at the same level of importance. When there is a lot to see or hear or smell or feel, I get overwhelmed. It is too much, and the only way I can let you know is by my actions. When I am overwhelmed, I am only trying to protect myself from more input. I may run away and hide, or hum or scream to drown out the individual voices, or rock to soothe myself, or hit or bite because “too much” is painful and I just want it to stop. Talking and touching will just keep sending input into my already over-loaded senses; I need to stop the input and get calm. Finding a place to get away from all the input will help me calm down.
To help me adjust to all the changes in the holiday season, watch me. See how I react to my environment. See what makes me wince or pull away, and what draws me closer. View my actions as words, and answer what I’m “saying.” Slow down the input you’re giving me; give me time to process all the new sights and sounds and smells and textures. Give me a space to be by myself, to regroup, to calm. Help me figure out this foreign language by using fewer words and more gestures. Understand that I’m really, really trying….this world is a big, fast-moving, word-based place that confuses and scares me. Help me figure it out. And thank you for understanding that I don’t mean to do things the wrong way; I’m just doing things the best way I can under the circumstances.