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Autism, the Bystander

10/19/2016

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​In the cafeteria, I had to bring her lunch so she could be the boss. At recess, I had to meet her at the swings so we could "fight". On the bus, I had to sit near her so she could taunt. Not because I wanted to, but, because if I didn't "listen", I would "really get it". So every day, I brought her lunch, I showed up at the swings and I sat in my "assigned" seat. And every day I let this schoolyard bully push me down and I would force a smile and laugh with all the other kids, pretending I didn't care, pretending it didn't hurt when I fell, pretending not to hear the embarrassing laughter echoing in my ears, pretending not to be scared when she menacingly told me, "see you again tomorrow".

Needless to say, that was a long, long time ago. I still see the bully on Facebook and she doesn't look nearly as menacing now as she did back then. The scary Schoolyard Bully still exists today, but, she has brought her friends, the Backseat Bus Bully, the Gym Class Bully, the Lunchroom Bully, and the meanest bully of all, the Internet Bully. It's a tough crowd that all kids hope they never draw attention from or run into alone.

Unlike the bystanders who laughed and encouraged the bully on my school playground all those years ago, kids today are taught the difference between being a hurtful bystander and a helpful bystander. They are taught that encouraging the bully or doing nothing is hurtful and that standing up for the victim (the bullied) or reporting the bully is helpful.

But what if the bully strikes quietly and alone? What if the bully is careful not to have any bystanders or witnesses by choosing a victim who is always alone thus decreasing the chance of a helpful bystander being near by? What if the only bystander for the bullied is....autism?

Autism keeps quiet. The autistic victim may be unable to ask for help or defend himself because autism prevents the bullied from effectively communicating what is going on.

Autism is unaware. Autism does not try to be hurtful by just passively accepting the bullying, but, it brings to the fight a lack of awareness about what is a good friend or a bad friend, so the bullied may not even know they are being treated badly.

Autism does not act. Autism may have stood by silently so many times that the victim starts to believe that being bullied is just the norm for him or her and that there is no alternative. Worse of all, autism may cause the victim to feel like they "deserve it".

According to a study conducted by the Interactive Autism Network, "63% of children from ages 6-15 with an ASD have been bullied in their lifetime". Most autistic kids struggle to fit in, they may exhibit different behavior, they may be socially isolated, all of which makes them very, very vulnerable to the Schoolyard Bully, the Lunchroom Bully, the Backseat Bus Bully, the Gym Class Bully and the Internet Bully.

Autism wants to be a helpful bystander, but, the various complex neurodevelopmental disorders that go with it, make it hard for autism to stand up and shout, "Help!!" Some of the bullied may have such limited language skills, so they are unable to tell. Other children, who may have better language skills, may feel different enough already and telling a grown up or someone they trust that they are being bullied is the ultimate proof that they don't "fit in", thus they keep quiet, as autism stands by and the bully wins.

As a mother of a child with autism, I have feared the Schoolyard Bully, the Lunchroom Bully, the Gym Class bully, the Backseat Bus Bully and the Internet Bully for my son so much more than that bully who took my food and pushed me around as a neurotypical child because I was able to finally fight back. It took weeks, but, finally I thought to myself, "enough". One day I told my mom about the lunch and the next day I didn't show up at the swings. I took away the bully's power and caused it all to end.

My son would not tell. Although Ryan is completely verbal, he sometimes struggles to "find his words", especially if it is something causing him anxiety or discomfort. He would not be able to effectively communicate what was happening to him and if the bully was not outright punching him in the nose, or calling him horrible names, I don't know that he would recognize the bully in the schoolyard, on the bus, in gym class or on Instagram.

I will continue to educate my son and keep a look out for bullies, but, the best thing I can do is what we all can do to combat bullies, remind our child that there is one place they will always be safe, one place they can always find comfort, one place they will always be accepted and loved and that I will never stand by and do nothing. I will also assure him that although it feels like autism is a hurtful bystander, autism or no autism, he, like all kids, deserves to be treated with respect, kindness and acceptance and that he does NOT deserve to be bullied by anyone.  

Then maybe I will show him a picture of my schoolyard bully on Facebook to prove to him that bullies aren't as scary as they seem once we realize that in the end, if we take away their power by believing in ourselves, bullies are just middle aged moms sitting in beach chairs drinking beer. 

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"Free to Be Me." Kinda.

10/4/2016

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In my eyes, he is perfect.

I see a smart, funny, talented, kind, passionate 15 year old who works so hard every day to try and fit in while also trying to be himself.
 
His peers, however, look through different lenses.

They see someone else. They see a quiet boy who seems to prefer to be alone, not saying much more than hello. They see a teenager who is smart, kind and musically gifted, but, they know little else about him. They see a classmate pass by in the halls, making little eye contact and making even less small talk. They see someone who is different, who sometimes imitates voices and movie lines, but, struggles to find words of his own. They see "different" and even if they may not think "less", they don’t know how to do "more".

I'm not sure what Ryan sees when he looks at his reflection. I think perhaps a combination of what I see and what his peers see. Someone who is smart, funny, handsome and kind, but, different enough that he doesn't quite fit in.
 
I was recently asked by an aunt trying to understand her nephew's autism, whether she should tell her nephew not to behave a certain way "so he won't get teased”. My immediate response was, "Hell no, let him be himself", but, then I remembered, not everyone will see that child the way his mother does, the way his aunt does, the way I do.
 
It's a fine line between helping an autistic child know what is acceptable, neurotypical behavior and wanting him to feel free to be himself. I walk that line with Ryan every single day, never wanting him to feel "less", but, knowing that being a part of the neurotypical teen world, he at least needs to understand "more". Free to be me, comes at a cost.

Ryan has said, “it’s unfortunate that I was born with autism”, so I know that there are moments, perhaps days, that he wants to be just like all those neurotypical teens, blending into the masses. I was a teenager once, so, I get it. I understand how desperately the desire to fit in, to be one of the gang can be, and I realize that for most of us neurotypicals, we can make a choice. We can think to ourselves, do I want to fit in so much that I change how I look, what I wear, how I act, who I socialize with, what substances I put in my body in order to be accepted, or do I say, "Screw 'em! I'm gonna be me, like me or leave me". We can make the choice. For autistic teenagers, making that choice is so much harder because more often than not, their body and their brain won't allow them to choose.

Ryan wants to fit in, but, he wants to be comfortable with how fitting in feels. When we are in the car and the song Cool Kids comes on, Ryan sings the chorus loudly and wistfully: "I wish that I could be like the cool kids, cause all the cool kids, they seem to fit in". Being cool comes at a cost and most days, Ryan's brain and body don't feel like paying.

Ryan wants to wear the cool clothes that EVERYONE is wearing, but, the Nike socks pinch his legs and the Joe Boxer socks do not. He wants to sit in the student section of the home football games where all the cool kids sit, but, trying to understand the various social happenings is so difficult that sitting next to dear, old mom is safer. Sometimes Ryan sees the other kids laughing and acting wild and wonders what it would feel like to act a little crazy, maybe bend the rules a bit, but, his rigid thinking just won't allow it. Ryan wants to have a friend, a friend that he says more than "hi" to, but, since he believes he has “said the wrong thing over a thousand times", the risk is not worth the gain.

Free to be me comes at a cost, and it ain't cheap. In order to fit in, Ryan has to sacrifice so much of how he feels, how he processes information and how he interprets the world and that's a high price to pay. No matter how cool the cool kids seem.

So, toning down my initial, knee jerk reaction to the sweet aunt worrying about her autistic nephew "being teased" for being himself, I would say this: Yes, kids and adults with autism should absolutely feel "free to be me", but, you are right, being so free may cause teasing and isolation. Then I would proceed to tell her how it's done in this house where we walk that fine line very carefully.

I remind Ryan daily that he is perfect just the way he is, and that being "different" is not bad, wrong or weird, but, I also give him examples of what the neurotypical world may do instead. This way, I am reiterating the importance of him being himself, but, letting him know other kids may do it a different way. Neither is wrong or right, one just happens to be more accepted by the majority.

One day, I hope Ryan realizes that the majority have it all wrong, wanting so desperately to look and be like everyone else, but, today, as a teenager, I know fitting in, no matter how uncomfortable it may feel, is important. As his mother, I know that no one will ever see him the way I do, but, I know in time, he will be free to be himself. For the people in his life that really matter, they will see his differences as something to behold, not something to look down upon, and they will accept him freely, at no cost to him. 

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