Being Open

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I've been thinking lately about our openness in regard to Bug's autism. Although we kept his process of diagnosis to only people we were very close to, we shared the news of his official autism diagnosis within weeks of it being made. We told our families, our friends, our coworkers, our church congregation...pretty much everyone we saw on a regular basis. We didn't discuss this choice much, but we were in total agreement that it was what we wanted to do.

Not everyone chooses to share a medical, developmental, genetic, or other diagnosis with everyone they know. And that is completely valid - it is a personal choice. I would just like to share our reasoning behind sharing with the world that Bug has autism.

It's fairly obvious that there's something different about Bug. A few people outside of our families told me that they always knew he had some kind of difficulty. Bug's delays weren't obvious to us, due to him being our first child, but the more time we spent around other children, the more we could tell he just wasn't like them. So, we shared Bug's diagnosis both for our and others' sake. 

For us, sharing the diagnosis would mean more compassion from others, and an understanding that Bug's differences aren't anyone's fault or failing. For others, a specific diagnosis makes interaction with Bug easier: they can draw on what they know about autism to help him out and be more patient with him. This mutual understanding was important to us, particularly in a church setting, where kids are generally expected to be well-behaved and quiet - and he wasn't! He also has teachers at church who have been able to help him enjoy his time there better now that they know his individual difficulties.

Some people may think that sharing a diagnosis is the same as trying to excuse behavior. We don't feel that way. We still hold Bug to behavior standards and if things get out of hand, we remove him from a situation, where possible. Others may feel that sharing a diagnosis isn't really our choice to make, but his, when he's older. Once again, we don't fully agree with that. When (if) he's on his own when he is older, that will be up to him. But for now, we'd rather let people know why he's so different from other kids, and autism is such a big part of our daily lives, that it's better to give a word to everything that's going on.

Aside from any practical reasons, we just felt we should share our world of autism with everyone around us. We took a big leap of faith in both sharing the news, and continuing to share our experiences with autism - what if people look down on Bug or us as parents? What if we know people who think autism isn't real? What if they think we are just looking for attention? All of our fears were really for nothing - we have been met with only kindness, compassion, patience, and love this past year. Our act of faith was met with an outpouring of blessings. Though our burdens haven't been lifted, we have many people helping us bear them. The support given to us helps us more than we can express.

Just as Bug has been teaching us as parents about patience, faith, Christlike love, and empathy, we are hopeful that by being open about his autism, he has been teaching so many others around him those same lessons. That alone is, to us, reason enough to share our journey with autism with the world.