What is it that makes autism so hard? I know we all want to shout out immediate answers like, "poo on the walls!" or "questionable future for myself and my children!" or "no freakin' sleep!". I have no intention of shrugging those shouts off, but I want to suggest that one of the fiercest reasons autism can be so hard is common perceptions of social norms. Whether we are parents of autistic children, friends or neighbors of autism, individuals on the spectrum or all of the above, a desire to fit in and be liked is running rampant. Because wanting to fit in and be liked is human.
I can't tell you how many times my low functioning thirty-two year old autistic brother would jump up and down clapping and screaming in a public place, and immediately my vision would become fuzzy. My smile would become fake. I'd giggle and ask my brother to calm down and show his joy only to me, not the entire store. The giggle and the smile were both for my brother and the staring (and usually frightened!) strangers. The asking him to calm down was for me, so that the staring strangers would think I am a nice person taking her strange man-brother out of the house even though I have to restrain his joy and teach him to keep it down, and then stop staring.
Some good news is, my mom is a wonderful teacher who has drilled into my head explain, explain, explain. And so my brother would then hear me lovingly explain why it is inappropriate to scream and jump in the store. How the older lady that had just turned ridiculously white may have actually had a heart attack and we were just lucky that she didn't! In all, a well handled and not all too horrible situation. However, the whole time I could feel eyes on me and judgments (like "poor girl"... yuck!) boring into my skin. I couldn't wait to get home where our joy could be screamed and jumped without risking stranger intervention.
I chose to use this example where things were loving and fine, even though there have been many much uglier incidences, because I was still uncomfortable. I was still aware that when people go to the store they want to shop, use coupons, find good deals and possibly flirt with the cashier. They don't want to have heart attacks or worry about a strange man flicking their ponytail. Because I know this, because I've learned this, I allow myself to feel apologetic and embarrassed.
Who made up these common perceptions of social norms? Why shouldn't we go to the store hoping to run into Mark Ruffalo, feel comfortable helping a stranger get himself and his walker into his van, dance in the aisles while we look for the organic ketchup or apologize to the sensory challenged child for our loud tie dyed shirt and then make a game of finding something to cover up with? Who decided we shouldn't walk out our door expecting magic and curiosities?
I truly would like to meet this person and suggest that these common perceptions of social norms are hurting our world. Children are bullied and afraid to be themselves. Hormone imbalanced teens are trying to discover their individuality but want desperately to fit in, appear "normal". New moms and dads are looking outside themselves to see how to be good parents. Men and women who have spent a lifetime working and paying bills, acquiring the "right things" and handling responsibilities are still looking for themselves. Common perceptions of the social norms are hurting us and stifling our discovery of self.
For families with autism it is truly one of the biggest hurdles. And, perhaps because of the importance behind spreading open mindedness and a willingness to do things different in the world of autism, we will fight for this important change. Perhaps autism is the gift that will force us to re-evaluate our common perceptions of social norms. Our world has become dangerously rule bound, fear based, judgmental, and drugged.
But it is also beautifully littered with people who mean well, are loving and willing to allow for difference.
We are only human. We are wonderfully human. We are all human. The rest is just perception. It doesn't have to be common.
Once again... Autism Answers.
Hugs, smiles, and love!!
Autism Answers with Tsara Shelton
