Family gatherings are as much a part of the holidays as the music, the lights & the gifts galore.
We all have family gathering horror stories. They’re out there for sure. But for the most part, after a year or two (or ten) have passed, we can laugh about those quirks which make our family ours.
For a child on the autism spectrum, family gatherings can be a bit nerve-racking. Scratch that, downright out of my mind overwhelming. This is not because they are bad kids. It’s so easy to pigeon hole these kids and think, “Man, he needs some discipline.” “If only mom wasn’t so easy on him.” Or “Wow, so glad my kids aren’t like that.”
If only you knew these kids…if only you knew, they’re doing the best they can. It may not be what you would consider “good,” but they truly are doing their very best. What more can we ask of them? Let me answer that simply: NOTHING. Our very best is all any of us can do. It’s just that your best and my best are quite different because we are different people. The same is true for the autistic child.
Autism is a neurological disorder which effects how the brain processes information, both incoming & outgoing. So just because you say, “You’re being too loud,” doesn’t necessarily mean “Be quiet.” It might just mean, “Hey, someone noticed I can make a loud noise. Cool!”
The rate of autism diagnosis is continually on the rise. Current numbers indicate that autism affects 1 in 88 children; 1 in 54 boys. Our youngest son, Ben, is one of them. Those numbers are staggering. If you don’t personally know someone who lives with autism, chances are you know someone who knows someone, or you will very soon. It might be your child, grandchild, niece, nephew, cousin, or a friend’s child. Eventually, you will know someone who has autism, or lives with it in their family.
Sensory overload is common for most of us around the holidays. The lights, the music, the laughter – it’s all good stuff, but it can become overwhelming, even for the neurotypical individual. For the spectrum child, this is everyday life.
As you prepare to spend some family time with the Always Unique Totally Interesting Sometimes Mysterious kids in your life, please consider this letter, released by Easter Seals, and written from the perspective of the spectrum child, and think about what you can do to make this a special time for them as well.
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.
And just because the spectrum child in your life may not say it with words, if you watch for it, you can hear them say “I love you” in a million different ways.