Pariah

But Little Do You Know About Something That I Talk About
I'm Tired of Driving It's Due Time That I Walk About
But In The Meantime, I'm Wise To The Demise
I've Got Eyes In The Back Of My Head So I Realize
Beastie Boys - So What'cha Want

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I hate the park. The girls love it and it's an easy 2 block walk, but I hate taking them there. It was at the park almost exactly 2 years ago where I had the spit scared out of me watching Anna interact with a little boy her age (3 1/2 years old). Or rather, watching Anna NOT interact with the little boy who wanted to play with her. He was highly verbal and approached her to play. She ran away from him in hysterics, screaming, then laughing to herself and running in tight circles over and over and over. Anytime he approached her, she ran from him, sobbing in fear. He asked me why she would not play with him. I told him, with a pit in my stomach, that she was shy. He caught up with her again at the swing set and started talking to her. Anna stared at him blankly and repeated the last few words of his sentences. Then she started scripting lines from Kipper to him verbatim, English accent and all. He just stared at her. I stared at them both. She was completely unable to communicate with him, and afraid of him because of it. For the first time it hit me like a ton of bricks, even though in the back of my head I already knew...I was looking at a little girl with autism, and so was everyone else on the playground. I'm not sure I've ever felt so alone. I went home and cried before calling the pediatrician and shaking every cage I could find to get Anna some help. I don't like to think of autism as a disability, but not being able to play with peers or communicate meaningfully with anyone - that is a a disability.

So the park for me is not a great place. I still don't like it. The park is where the typicals run amok, playing together. Two years and lots of therapy later, Anna is enchanted by their play. She runs after them, following them, mimicking what they do, copying their movements and laughter, looking to them for her next move. I take some comfort in the fact that this mimicking behavior, which drives me crazy, is supposed to be a good sign in high functioning kids. It's supposed to mean they care enough to want to be involved and accepted, and likely to adapt enough to fit in over time. But the typicals are less enchanted by Anna. She's the same age, but she plays like she is younger. She does not talk to them much because language, although she can now communicate effectively, is still not her preferred method of communication. So she ends up following. She looks a little bit different too, she tends to flail her limbs when she runs, and she'll flap her hands when she's overly excited. It' s not too bad to look at when you are an adult - looking at Anna you'd just think she was displaying typical playground behavior. And I get that from adults all the time - "but she's being typical!", "but she's so high functioning!". But the kids know better. They have to. Kids are more in tune with their guts than adults, who have learned to ignore their guts and instead rationalize with their heads. It's Darwinism in action on the playground, survival of the fittest, and kids can zero in on another kid's difference in no time flat, and close their social circle to the one who is not like them.

Watching playground behavior like this is like watching Lord of the Flies. It's going to kill me. Anna is oblivious to the huffs of annoyance, the glares, and the fact that the children she's trying to play with run away from her doesn't faze her at all. She continues running after them and although it's obvious to everyone else on the playground that the other kids are not interested in having her join their group, Anna is clueless. Although Anna's feelings are not yet hurt by this kind of treatment, my feelings are definitely hurt. Watching these interactions is just like a knife in my heart, slowly twisting with each roll of the eyes, each glower, each rebuff. I know what kind of game they are playing, and I hate it.

I don't know how to get Anna to understand the social rules of playground play...I can talk to her about it, but she doesn't understand. I'm trying so hard to build her self esteem and I'm afraid one of these days some little kid is going to grind it into the dust.

And it's not just Anna who is given the cold shoulder. I am on the outside too. Watching. Waiting. It does not help to have well intentioned people who don't know what it's like to raise a child with ASD tell me that my child is being typical. They brush off my concerns and barely contain their annoyance at my perceived overreaction- "all kids go through that!". No, they don't. I suppose it's too much to ask of others to not dismiss my daughter's struggles. I suppose it's too much to ask of others to imagine a reality that is not their own. In order to be a good parent to Anna, to get her the help she needs, to be on this journey with her I am also alone. Marginalized. Right now I feel like autism is a very lonely experience, for everyone involved. I hope as we continue our journey that will change, but I'm not holding my breath.
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"...Aspie girls she sees are more adept at copying the behaviors, mannerisms and dress codes of those around them, than Aspie boys tend to be. "From my personal experience, they seem to have a greater drive to fit in than boys with Asperger's do," she says. "So they spend a lot of time studying other girls and trying to copy them." When social settings change, this can spell disaster. "As you move from high school to college, or from one group of friends to another, you have a whole new set of rules to learn," said one Aspie woman who asked not to be named. "Not only do you lose your own identity, but if you end up surrounded by the wrong people—mimicking their behavior without understanding the motivations behind it can lead to big trouble."
http://www.newsweek.com/id/168868

"Contrary to popular notions, people at the high end of the autism spectrum disorder continuum suffer most from an inability to model "self" rather than impaired ability to respond to others, said Baylor College of Medicine researchers in a report that appear in the journal Neuron. This inability to model "self" can disrupt an individual's ability to understand the world as a whole, said Dr. P. Read Montague Jr., professor of neuroscience, and director of the Human Neuroimaging Lab and the Computational Psychiatry Unit at BCM."
http://www.bcm.edu/news/item.cfm?newsID=1058