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A Letter to My Family & Friends

While visiting with family and friends can be a happy time, it can also be very, very hard for me. 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 in the best way I know how. Words may 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 may “talk” through my actions instead.

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 may yell when I am happy, and I may yell and cry when I am upset. I may also scratch or pinch, not always only when I’m mad, 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 may not 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 may be 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 harder it is for me to find the words.

I may have trouble with everything happening around me. I hear everything; I see everything; I smell everything; I feel everything. I may not filter out what is unnecessary, because I may not 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 may 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. Then I can regroup, and come back out when I’m ready.

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. See 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 what’s happening by using fewer words and more gestures. Understand that I’m really, really trying….this world is a big, fast-moving, word-filled 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.

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