Autism parents haunted by question: Why?
This article is a followup to the announcement earlier this week that the vaccine-autism relation study, that proponents of vaccine-related-injury-causing-autism rally around, used faulty science to support its claims. Truthfully, this revelation wasn’t a big deal to our family, as we aren’t a “no vax” family, but a selective vax family. As I’ve said before, Newt’s done his own thing, since before he was born. He didn’t have vaccines for months before strogly showing symptoms of an autism spectrum disorder.
One thing this article adeptly mentioned is parent feelings. I know I’ve thought on it a lot. What caused this? As Drew points out, we’ll likely never know. But, when I look back at the three kids’ gestation, Newt’s was anomalous in that it was the worst time of my and Drew’s collective lives. I don’t know if ultimate sadness, disappointment, an over-worked-ness can cause illness, but I know that those were the hallmarks of 2005-2006.
Then, you see data that shows the highest incidences of autism occur in the Pacific Northwest, and then Silicon Valley, and you wonder about that information’s implications. Is it the constant technology in the house? In utero effect or early childhood? Are people who do tech work more likely to be autistic themselves, and with the strong scientific support that there is a genetic component to autism, even at the epigenome level, was location just another symptom/unrelated fact?
Drew right: we’ll never know, probably. So, just move on, giving your child your best.
But! As the last few yeas have demonstrated, there are a lot of people who have no clue hiw to handle the fact that a child has autism, and all the implications that has for the child’s family, primary caretaker, play, toys, schedule & rituals, lifestyle, and on and on and on. And, while folks say they want to be educated, they want to learn more, they don’t ever put forth the effort that an autistic kid’s family does to help the child reach their full potential.
It becomes a frustrating cycle of dealing with someone who thinks they’ve figured out autism because they read some new article, when every parent of an autistic kid knows it’s not a game changer. The recent study or vignette you saw on your local news, I (probably) have already heard of or read, and if I haven’t, there’s someone else who’s reported the same thing, just a different way.
It was fun a year and a half ago thinking I could be a vessel to share cursory information with someone and then they’d go on, like we did, devouring every piece of info in sight. Seriously, I laugh in 18month-ago-Deedee’s general direction. People only care as much as it doesn’t inconvenience them. It’s still same old, same old, and much like before, no one is listening about what Newt needs.
So for my sanity’s sake, I’ve receded to “my world”. I integrate as the kids need it, but I’m not doing it for anyone else. And, you know what, It’s Been Awesome!! I’m exhausted with being disappointed in various sectors of humanity, and by living this way, i’m not annoyed or disappointed, as much (like I said, sometimes, for the kids’ sakes, I have to integrate with other folks). But, for the most part, if your name isn’t Andrew Miller, or you’re not one of the handful (seriously, less than 5-10) of folks that have been a blessing to us, I’m really not dealing with you.
As you can read from the article, we have more than enough to worry about, without adding someone else’s drama.
Posted on February 5th, 2010 by Deedee
Filed under: Life in general, Special Needs | No Comments »
