Being that it is April, Autism Awareness Month, and I have a child with autism, I am compelled to write—once again—on this topic. I never set out to write about autism. I’m hardly an expert. But it seems that’s what you do when faced with this disorder on a daily basis.
I don’t usually share information about my son’s diagnosis right away when I first meet people—that is, unless he is standing next to me making continual truck noises, and not responding to the person’s greeting. Then, I have to explain, he is not being rude, he’s autistic. However, if I meet you—sans son—I’d rather you not know this little piece of information. Not because I’m embarrassed by it. Only because it suddenly becomes the lens from which people view me once they find out.
“My son’s autistic,” I mention, for whatever reason.
“You should meet so-in-so,” they always respond.
I want to ask why, but hold my tongue. I know this happens because the person wants to connect me with a potential resource. However, let me tell you, I have more resources than I need, and would like to sometimes connect with others based on issues rather than my son’s diagnosis. And just like there is more to my son than his disability, there is more to ME than his disability.
A couple weeks ago, during the hand-shaking/greeting portion of our church service, a lady in front of us held her hand out to my son. I informed her, the reason he did not shake hands was because he was autistic. Yes, maybe I should take the opportunity to teach my son to greet properly in these moments, but I am unsure about forcing the greet-ee to partake in such an activity, so I don’t. After the service, the woman, who I’d never met before, asked me how things were going with the autism. Honestly, at present, they are no worse than what the average parent has in dealing with an adolescent boy. In fact, I sometimes think I have it easier! However, feeling I had to speak for the whole of my parent group (those with disabled children), I said something like, “As well as they can be.”
You see, had I said “wonderful, fantastic” (having God in my hip pocket and all) I’d be giving the impression we had no issues due to this diagnosis. Why is this a problem? Because it is untrue. There are real challenges the average person has no clue about and I’d love for that person to keep “autie families” in mind when they encounter us or make plans that might include us. Simple things like taking a young man to a public restroom (with his mother) are suddenly not so simple. Thank goodness many public facilities now have Family bathrooms, but when they don’t, I have to endure the scowls of lines of women using the restroom, and am forced to explain to each and every one of them why my fifteen year old son is in there with me.
Still, saying things are awful feels inaccurate as well. My son is more than an autistic boy. He is a sweet, kind and helpful young man—when he understands. He’s blessed my life in so many ways, and I am grateful for him. To only see him in light of his disability, only speaking of him in those terms, is somehow incomplete. Yet that is all people ask about.
Don’t get me wrong. I don’t care about whether you call my son an “autistic boy” or “a boy with autism.” Those are only words to me. What I want instead is for people to treat him (and to some degree me) as more than just that thing.
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