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Politics, Religion and Vaccines…..

November 19, 2011

When I was growing up, I learned there are certain things that polite people simply do not discuss at the dinner table- politics and religion. In the autism world, I think we should add a third- vaccines. Everyone seems to have an opinion, and everyone wants to know where you stand on the issue. When people find out that I have three children with autism, it inevitably comes up, “so, do you think the vaccines caused it?”. To be quite frank (and a bit selfish) I really don’t care what caused it! The reality of my situation is simply that they all are on the spectrum, and I am left to deal with the present and the future. I simply don’t have the luxury of time to ponder the past or second-guess doctors with far more medical training than I have.

This leads me to another point (yes, I’m on a soapbox now): Please don’t whisper the “A-word” like it’s some kind of curse word.

One day I was sitting with Mary (my youngest) in the waiting room at Children’s Hospital, waiting for Joyce who was in an OT session. A woman with a preteen daughter sat down next to me and started questioning me about the Backyardigans video that Mary was watching on my IPod. When I explained we were just waiting there for Mary’s sister to finish up, she promptly asked,”What’s wrong with her?”. Trying my very best to keep my Irish face from turning red, I pretended that I hadn’t understood her.

Was she actually asking what was wrong with my daughter, here in the hospital waiting room? Wow. “I’m sorry, what did you say?” I’m giving you a second chance here, lady….

“What’s wrong with her?” she asked again, unabashed. I noticed her daughter rolling her eyes trying to sink into her chair as though she could simply disappear. I smiled and replied,”There’s nothing wrong with her. She has autism, so we come for Occupational Therapy to help her cope with her sensory issues.”

“Oooohhhh… I am sooooo sorry. That is so awful.” There it was… Like nails on chalkboard “Don’t be.” I replied. “Actually all three of my children have autism. I don’t see it as a curse. Especially with my youngest, here. It could have been so much worse.”. I noticed her daughter sit up and lean forward, paying attention to this lady who was deliberately not chewing out her mom. That was why I tolerated the question. This girl was paying attention. She had not expected a peaceful, smiling response to her mother’s complete lack of tact. The mother, then, got this pitiful gossipy look on her face. You know the one. “You mean they all have (she mouthed the next word, not daring to say it out loud) autism?”

I felt like I was sitting in the middle of a Harry Potter movie. He who must not be named. This is how the villaninous Lord Voldermort is always referred to in the movie by those who feared him.  It was as though this was some sort of leprosy that could spread by simply saying the word out loud. I won’t bore you with the details of the conversation. Suffice it to say, we chatted for a few more minutes, and I was then mercifully rescued by Mary’s hearing therapist who was meeting us at the hospital for a session that morning-you can imagine scheduling therapies for all three kids can be a challenge. I’m honestly not sure if the mother learned anything, but I could tell by the way her daughter was listening, that she did. Good. One more warrior out there on our team.

So I think my point here, in all my rambling, is that there are certain things that people say or ask that will really boil an autism mama’s blood. Let’s recap:

Do Not discuss vaccines in polite conversation. For me, I have my opinions, but it seems an irrelevant discussion to me at this point- unless you have a shot that can get my baby girl to talk to me….

Please don’t tell me you’re sorry. Nobody has died. In fact, I am grateful for these wonderful children that God has entrusted me with. Their autism is only one characteristic of their lives, and in so many ways it has been a blessing. They are each amazing, in part despite, and in part because of their autism. If there was as a magic pill to make their autism go away, I’m not sure I would give it to them. I wouldn’t want to change who they are. (That said, it would be nice if there was a magic pill for the sensory overload, meltdowns, wandering and of course one that could make her talk.)

This one is important: Please don’t speak of autism as something to be feared or ashamed of. There’s a very good chance the person you are taking to either has autism themselves, or loves someone who does. Do not mouth the word silently, like it’s a curse word. Do not avoid the autistic person in waiting room as though they are afflicted with something you might catch. Do not speak about them behind their backs. Do not assume that because they cannot talk that they cannot hear and understand you, or that because they have difficulty interpreting your emotions that their feelings cannot be hurt by an unkind or ignorant remark.

As Hermione Granger so wisely stated in a Harry Potter movie, “Fear of the name only increases fear of the thing itself.” Autism is not something that we fear in this house. It is something we strive everyday to understand a little better. It is a fascinating life.

Have a wonderful Thanksgiving. And remember at the dinner table, no politics, no religion, and no vaccines!

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