When Everyday is Autism Day

Tomorrow, April 2nd, is World Autism Day. It’s a day dedicated to the recognition of what Autism is, how we can help others know more about it, and ultimately how those things can lead to acceptance of individuals with Autism. April is also Autism Awareness Month, so, theoretically, there should be lots of opportunities to share and educate about Autism.

I have no problem with Awareness days and campaigns. I appreciate and support them because I work with lots of people they pertain to. I think it’s important to acknowledge what other individuals with different circumstances are doing in the world, how we can advance research for these causes, and most importantly, how to educate people to not be ignorant about what they don’t know they don’t know. If it takes a particular day being dedicated to something to get people’s attention to do that, that’s fine by me. So today, and the next 28 days, are that for my son. A chance for people to increase their awareness, education, and acceptance of him.

But for our family, it’s different. April’s clock will tick out and it will be May 1st and guess what? It’s still going to be Autism Day. Because EVERY day is Autism day here.

Like I said, I appreciate awareness days. I am a proponent of education, awareness, and acceptance. But do you want to know where my frustration begins? When there is no “action” that follows all of those other campaign friendly words tied up in their neat little bows.

Tomorrow, I ask something of you. Don’t make a post saying “It’s Autism Day!”. That’s just words. It’s likely with the current statistics for ASD incidence rates that you know someone with Autism. Your blue filter on your profile picture in honor of my kid doesn’t mean anything to me. I appreciate very much the spirit in which it is meant, but what have you actually done when you filter or frame or just type out the word “Autism”?

Don’t worry- I don’t complain without offering up an alternative action plan 😉 Here are some thoughts on how you can make families who live Autism Day everyday feel a little more recognized, appreciated, and accepted 🙂

  1. Tell somebody what they’re doing well. Insider’s secret: However confidently we pick a screaming, sprawling child up off of a museum floor to carry onto the next exhibit, sometimes, inside- we die a little each time. It’s not so much that we care what people think, but we have a split second to strategize how we can rebound before hitting the meltdown point of no return and it’s stressful as all get out until we get there. It takes a lot of physical preparation and mental energy to get back out there and keep doing it time and time again but we do, because guess what? The day we don’t reach into the touch tank at the aquarium and body slam a starfish onto the rocks is going to feel amazing. I find, personally, this is where I feel the most lacking as a parent. I am my son’s therapist and his mother. I make his education plans, his therapeutic interventions, and I parent him. Today, it works for us, so we’ll keep moving forward like this until one day it doesn’t. But that also means that if I want cheerleading, I need to break my own pom poms out. So please, friends- it will mean so much more to a mama if you cheer them on instead of changing your profile picture.
  2. Ask how you can better interact with their child. Caleb has a lot of people in his life who have learned a lot over the last couple of years and do a great job with him, and there are others still that don’t get it and don’t seem to want to. I’ve talked before how the first person my husband ever met with Autism was his son. He’s learned so much and does so well with him and educates others on how to appropriately interact with him that it makes my wife, mama, and pediatric therapist heart burst with pride. This past Friday Caleb stayed with a babysitter before Brian went out of town and the babysitter redirected him to not do something but Brian explained to her how it was ok because it was a proprioceptive sensory seeking behavior. And that to me, is far more romantic than a bouquet of roses. Sometimes kids with Autism don’t always play in a typical way. Instead of watching them from the sidelines, ask how you can change how you interact with them versus waiting for them to change how they’re playing. Social skills are hard- ask how you can help facilitate eye contact or conversation- just don’t ignore people. I don’t want my son completely pulled from his world into into ours. I want to live in the peaceful place where those worlds meet.
  3. Don’t assume. Don’t assume that being nonverbal is the same as not having something to say. Don’t assume behaviors originate from poor parenting versus compulsions or sensory seeking needs. Say “hi” to my son every time you see him, even if he doesn’t say “hi” back. Instead of thinking “wow, Caleb’s really having a hard time” think “what in the environment is difficult for him?”. Just don’t assume. Be a decent person about things.

Thanks for sticking around to read one mom’s thoughts on the importance of World Autism Day and how you can DO one small thing to make all the difference for someone else.

 

Love and Autism,

Erin

 

Holler at me!