So much has changed since our diagnosis day. So much progress has been made and so many people are responsible for that progress, we could never truly thank everyone. We would surely miss someone, but everyone, and I do mean everyone, who is a part of our lives is to be thanked. Those who encourage and support us and our son, there are days that your smile is what gets us through the challenges. Those who unknowingly challenge us with stares, scowls, and unkind words not meant to be overheard, are a reminder of the work yet to be done not only on awareness, but education, so that spectrum kids can not only be understood, but appreciated for who they are. Thankfully, there are many more encouragers than challengers, but I realize both are important, for both keep me grounded as we navigate the spectrum scene.
As we enter the holiday season, there will be concerts and school parties added to the already hectic schedule our bigger than average family keeps with high school and junior high activities of older siblings. My Christmas wish this year is for an extra dose of understanding for my spectrum son. If you see us struggling while we are out and about, please consider the wisdom in this letter, written by professionals, from the perspective of a spectrum child:
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. Because 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.