My husband and I feel that our daughter having autism is nothing to be embarrassed about. Sure, it’s not good news, in the sense that our daughter’s life will be more difficult, and our lives as her parents are going to be more stressful than if she was neurotypical. We need to figure out how to get her the best care and therapy possible, to give her the best life we can, while keeping our own lives (and incomes). But this isn’t the end of the world, and she’s still our daughter, and she’s the same person she was before the “autism” label was applied. With the diagnosis, we now have a better understanding of her differences, and more information about how to best help her.
So, when we got the diagnosis, we started slowly telling people. Starting with immediate family, as well as close friends, then a few coworkers, or even acquaintances if it came up. We don’t announce it to everyone we meet, but it’s a fact about our family and we’re not embarrassed about it.
The reactions have been varied. Some people just say “oh” and don’t know what else to say. Others tell me about a friend or relative with autism. Some have reacted as if I just told them my daughter has cancer and might not make it. Things like a huge gasp, a shocked expression and “oh no” or “I’m so, so sorry for her” over and over. Of all the reactions, these are the ones I like the least. I know the person is just trying to be sympathetic, but my daughter isn’t dying. These reactions make me think I should feel worse about the diagnosis than I do. But I know they come from a place of good intentions.
I have been debating with myself whether to make a facebook post about the diagnosis. My facebook friends are a varied bunch, including professors at a universities in the U.S. and abroad, friends from high school/college/grad school, extended family, neighbors, my former marching band director, etc. etc. I only post on facebook maybe once a month, and I consider anything I post there to be public information. I do post occasional happy family photos or family updates. On the one hand, if I want to treat the diagnosis as normal, and not something to seek sympathy over then it probably shouldn’t merit a post. On the other hand, if I don’t post something about this, am I treating it as something to be hidden, disguised, not talked about? I did already join a closed group for local parents of autistic kids, so maybe that makes this info public already.
I’d appreciate any comments with advice or experience on how to approach “coming out” on facebook as autistic or the parent of an autistic person. If I want to be able to discuss treatments or experiences, I need to come out with it eventually, but I want to avoid the “like she’s dying” type of reactions as much as possible.