Stumped by an eight year old

I made brief reference to an impromptu question and answer session about autism that I gave at our family vacation summer camp in my last blog; I haven't been able to stop thinking about it. I have felt SOME obligation to participate in autism awareness as a mother of two boys with aspergers/autism and a wife to an adult with aspergers as well. I am not incredibly versed in autism science, and I am in fact a poor representative in general for others suffering with a family member's autism as all three of my aspies are very high functioning. So high functioning, in fact, that we get little sympathy. I never knew until recently that my sons (and probably my husband) qualify for medical assistance, which will provide educational tools for them that we couldn't possibly afford on our own. Their pediatricians never mentioned it. They probably think that we don't really need it, things aren't that bad. I always have the suspicion that when we are out in public together, and strangers (as well as extended family) witness the atypical behavior of any of my three guys, they probably chalk it up to them being "weird" at best, or assume that I am a bad mother at worst.

That goes extra for my dd with obsessive compulsive disorder; I have gotten outright dirty looks and nasty comments in situations where I have tried to be creative in helping her grow and develop in social venues. She has a high degree of social anxiety, and she doesn't want anyone to know it. I think there is definitely an assumption that if a person "looks normal" then they must also BE typical. There are no plaster casts, protective helmuts or wheel chairs that are obvious props of disability; there are no physical feature markers like the slanted eyelids of down syndrome. Many times a person with a disability prefers to keep that knowledge to themselves anyway so as not to stand out in crowd, many times their most fervent wish is to be typical and fit in as much as possible without drawing unwanted attention to themselves, it's amazing to me how much behavior is motivated by a person's strong desire to be "normal" and "accepted."

I still wish sometimes that there was a way to "warn" people in social situations with my mother that she is schizophrenic, so that they can understand that there is a reason for some of her odd behavior without being afraid of her. But she doesn't want to acknowledge her condition, even to herself, much less tell others. So last week when she told me that no one would really talk to her at a high school reunion function, I asked her a few questions and found out at the beginning of the luncheon she told one of her old casual acquaintence school mates that there were UFOs presently hovering over the Neshaminy Mall. I feel for her loneliness, and I also feel for the poor person who must have been fearful of my mother or at least very uncomfortable after what was inappropriate "small talk" in that situation. I keep trying to gently impress upon my mother that she isn't likely to find metaphysical like minds in the seventy plus crowd in our extremely religious conservative southest PA region, and definitely not at a high school reunion. I know it falls on deaf ears, the delusions of paranoia and grandeur run so deep in my mom that my entire adult life I have come to expect that on almost any social occasion that we attend together that she will at some point corner some unsuspecting victim with tales of the upcoming apocalypse.

I want to be a better advocate for raising awareness in regards to mental/emotional disabilities. I really want to make sure my children get the tools they need to be able to be socially appropriate and function independently in general society, I would love to save them from the difficulty and pain that I have witnessed my mother and husband suffer. I have finally realized that although a lot of it is working directly with them; another piece of it is definitely helping to improve societal acceptance of diversity.

Camp really lit a fire in me. I rose to the challenge of speaking in front of an assembled crowd, mostly because I figured how difficult could it be to tell people about my boys for five minutes? Well it turned out to be a lot harder than I thought. So far, my consciouness raising has mostly been limited to one on one conversations with adults that come into contact with my children and maybe need to be aware of their differences. But the very first question I was asked as I stood up on the stage in front of maybe eighty people threw me for a loop, I was actually stuttering and sweating a little as I wracked my brain to come up with an appropriate answer for a very simple question: What is autism?

No one had ever asked me that before, and what made it especially challenging was that it came from an eight year old. I frantically searched my vocabulary data banks to try to think of a way to explain it that he could understand. I'm sorry to say that I did a pretty lousy job. But I thank god for his question, because you can bet that next time someone asks me that, I'm going to have an answer ready that a young child can understand. It's not only important for adults to become more aware, but obviously, the children of my sons present generation will be the adults in their future as well, long after their father and I are gone. In fact now I will be soliciting questions from others, so I can prepare appropriate answers for all future opportunities. One thing my children have taught me is the importance of "teachable moments," and they don't just come when it's convenient.