There has been a lot of discussion back and forth in the autism community about whether today, April 2nd should be Autism Awareness Day or Autism Acceptance Day. I completely understand why Autism Acceptance can be more important to people with autism and their families. Being aware of something’s existence doesn’t necessarily bring about the accepting. I came across an Instagram post from a girl I follow named Brit a couple of days ago that talked about the term “different” and how it is used in types of awareness strategies. Things like logos that say “Different is Cool” and in my own case when 6 years ago we raised funds for Retrieving Freedom I had shirts with the logo “Different not less”.
The point she made which really struck a chord with me is when using the term different, it alludes to a “normal”. And that might be the problem. I don’t know anyone or family that when the layers are peeled back you find “normal”. And what does that term mean anyway. You know I love a definition, so here you go.
Normal is about conforming to a standard of our society. It is usually what is typical and expected. Normal feels a lot like control and if I’ve learned anything in my life it is control is an illusion. And all we know is our own normal, not everyone else’s normal. What looks and feels normal to us is just familiar. What isn’t normal to us is unfamiliar. I will always be in the position of explaining the unfamiliar things to others in our lives because of Everett’s autism. I will also always be in the position of explaining the unfamiliar things to Everett that we encounter. He has to accept so many things every day that are unfamiliar and hard for him. As Everett grows larger, his presence in public is also larger. He is loud and usually on a mission when we are out. He startles and scares people. It is unfamiliar and a lot of times they physically withdraw. Turn buggies around, won’t make eye contact, stare, etc. The people in our lives that we are close to aren’t scared to ask questions about autism. My best friend jokes as she asks what in her terms is “the dumb autism question of the month” and she is in the trenches with us with Everett, but still wants to know more. I don’t ever mind answering questions, because I forget what is unfamiliar to others.
Everett really isn’t different in the ways that matter. Everett loves connection with other people. He seeks out and is comforted by what is familiar. What he finds unfamiliar is uncomfortable and scary. But you know what Everett is really good at that I learn from him every day? He shows up in the unfamiliar better and more consistently than anyone I know. Doesn’t mean he is perfect at it or that we aren’t a mess sometimes. Everett can’t tone anything down. He tries to learn to fit in so his connection levels are higher. He is learning how to appropriately be social, but has a tendency to be loud and aggressive with his interactions. And he keeps learning and trying. The connections he has with family and friends is the highlight of his life. He loves so big and has so much joy. My hope is that this never goes away.
I had a discussion with another autism parent about how special needs parents live in 2 different worlds. It is like constantly having to jump a fence back and forth to the two sides of our lives. It is a good thing on a lot of levels, but can also be cumbersome to constantly be hopping back and forth between worlds. Balancing both is important. I love so many aspects of both worlds, but are still left with the harder parts of all sides. The skills I have gained as a special needs parent are useful in all aspects of my life and I’m very grateful for them. I have to stay so calm and in control of my emotions. This was not something I grew up with. My family was (and is) filled with big personalities. Reactive, passionate, and voluminous emotions. Everett is all of those things. I love that, but for him he needs me to be the anchor. The forever place of steady. When I’m off and out of alignment is when he has his worst days, which weighs heavy on me. It forces me to push through to what matters most, realign, and drown out the noise that swims around in my own mind.
We live in a society that right now very loudly hates what is unfamiliar to them. This era of information shows us unfamiliar things all the time and rejecting things we don’t understand closes us off to connection with people, places, and things that are unfamiliar. Really, what I am talking about is being aware to the process of how we act in the unfamiliar. Being aware of the discomfort and its root. Accepting autism for me was the best thing I’ve ever done, because it opened my unfamiliar eyes to a world that is better and more real than what I was ever familiar with before Everett. I encourage everyone to accept what is unfamiliar in your life and see the goodness that will transpire.
