Maybe I expect too much of our friends. Most of our friends have "lived" through the last six month of emotional ups and downs with us. So I guess there is a part of me that expects understanding. Understanding of what we are going through, of what it is like to field questions about David, and what it is like to face the looks from others when David acts out or the looks of pity when we have to "explain" him. It is unfair of me to expect that our friends will know and understand an ASD if they do not have direct experience with someone diagnosed on spectrum. Most of our friends do not see our children daily, or weekly for that matter and despite the fact that I talk with them regularly about life and the kids it is not the same as being around them. I as much as I want understanding from them I need to be understanding as well. I never meant to hurt anyone's feelings and I feel horrible that I did. My friends are the world for me and they have been my rock through life and especially the past six months.
I think the main thing about social settings is that David is easily disregulated and is easily left out of a group. In part because of his ASD and in part because of his temperament and general interests. Socially he is very immature and is lacking the skills most people expect a typical nine year old to have. So while a typical nine year old might know how to go and ask to "join in" with peers when they group off, my son and other kids with ASDs don't necessarily have those skill yet. David is nine and it "should" work both ways. When two kids go off and he is feeling left out he "should" go and try to join in with his friends but right now David doesn't know how to do that. It is something he needs to learn and is learning. But when it comes to social learning, his learning curve is not the same as typical nine year olds. This is particularly frustrating because David's learning curve with most things is so high. Because of this David is often left with hurt feelings, not knowing how to join in. His friends often don't realize that he is feeling left out because let's face it how many nine year olds pays attention to who feels a part and who feels left out.
The second thing is because of David's social and emotional awkwardness we are often left with odd looks, questioning stares, and actual questions about why he is acting the way he is acting, why doesn't he go join the group, why can't he ask to play too, etc. At which point we are left with our own social awkwardness. Up until the past six months we could only attribute his behavior to his ADHD diagnosis and a high emotional lability. Since getting his Asperger's diagnosis things make more sense (and less sense). More sense in that we know what we are dealing with. Less sense in that an ASD is an incredibly vast spectrum of behavior and emotion. For us, the social awkwardness is in having to explain to people, often friends of friends or complete strangers, that David has an ASD. At which point I am either bombarded with questions about ASD, David, how we found out, when did we know, etc. Or I am given the pity look. The one that says "Oh, how horrible for you" or "I have no idea what to say!" (I am not speaking specifically about this past weekend but just in general) At which point, I don't know what to say or I give my own weak smile.
The thing is, David is not someone who should ever be pitied. Nothing about him is horrible. He is an amazing nine year old boy with the whole world open to him. I don't want anyone to think he or we need to be felt sorry for. Yes he is diagnosed with Asperger's Syndrome. Yes we are a family dealing with an ASD. But those are just things about us. They are not who we are as individuals or as a family. And I think sometimes when people hear "he is diagnosed with Asperger's" or "he has an ASD" they forget that.
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