A common debate among parents of autistic children is whether to make the diagnosis public. Not only that but, if they decide to tell some people, how many should they inform? Do they just tell close family and friends, the school district, their pediatricians, or do they risk telling complete strangers who witness a meltdown or telling the neighbor next door? Each parent has to make that decision for their child at least until the child is old enough to make that decision for him or herself. It's not an easy decision for any parent.
When starting this blog, I intentionally did not name my child, although his name may slip out somehow or other. This blog is about him but I won't identify him so publicly for his own sake. I worry that I might say too much to too many people and that it could impact him adversely. I truly never want to do that to him.
What keeps me from being silent, however, is that I don't think silence benefits him or other children who are autistic. When you hide something from others, there is the implication (whether intentional or not) that what you're hiding is shameful. I am not ashamed of my son nor do I want him ever to be ashamed of himself. There is the possibility that some may view my child in a way that will sadden and infuriate me or, as he gets older, may hurt his feelings. Isn't that true about everyone to some extent though? We all are judged by others to some degree, aren't we?
Another reason my husband and I decided to be public about his diagnosis is that, before, when he was "showing his Aspergers" (without our knowledge of his condition), people falsely assumed he was being a jerk and/or that we were horrible parents. His behavior can be nontraditional, unusual and confusing. People are more accepting of him during his "Aspie" moments when they understand that he can't always help how he reacts and they often help me and/or my husband rather than judge us. Granted, judgment is flung around no matter what but it's slightly less pervasive when his behavior is defined in terms people can understand.
Finally, my son was born to my husband and I whether that is to his benefit or detriment who can really say but we have always been open about our lives because there is no shame in our game. Silence puts a strain on relationships. It can create an unintentional division between people and can often be the source of conflicts because, whether we tell people our struggles or not, they influence our behavior in ways that may be confusing or misinterpreted by those who are out of the loop.
Silence doesn't help others in the same position either. Although the specific struggles and challenges are unique to my son and our family, there are so many other families affected by autism and we need each other to cope. I hope to share what we learn in order to help other families. I also want to share the emotions, good or bad, that we feel so that others know that it's normal, that it's ok. Raising an autistic child is challenging to your very core and it doesn't stop being that way. It requires a strength and endurance only found after deep soul searching. If we search together, maybe we can make a better world for our children but we can't do it if we're afraid to talk.
I hope my son will forgive my openness when he is older. Right now, he knows he's awesome. He'll tell you that. He knows he is autistic and that he's been diagnosed with Asperger's Syndrome. As far as he is concerned, he is who he is and he is quite certain he rocks. He laughs at the term Aspergers because it's a silly word dreamed up by grown ups. I want to keep it that way as much as I possibly can and I hope that our being open about his diagnosis only affirms that he is a beautiful soul and there should absolutely be no shame in his game.
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