I’ll have been involved in the online autism community for three years this March. I’d say the community has changed, but I’m thinking it’s more that I changed over the years. People still bicker about the same kinds of things (some of the people are the same ones who’ve been at it for years), and the divides seem to be more entrenched than ever before, if you go looking in those places. I try to avoid that, now.
Sometimes, when I make the round of blogs, of bloggers posting their deepest feelings, only to be roundly attacked by others, I want to respond, to get into the middle of things. Most of the time, though, now, I don’t. I shrug and move on. I ask myself first what possible good could come out of my investment.
It isn’t that my positions about autism have changed much. I still don’t think vaccines are implicated in autism. I still have a strong aversion to the use of untested and potentially dangerous treatments. I hate to see people throw away precious resources on woo when their efforts, time, and money could be better used. I’m still adamantly opposed to those charlatans who take advantage of parents who will do anything to help their children achieve their potential.
What has changed, though, is how I believe individuals should be approached, how situations should be addressed. Where I once found myself outraged, angered, frustrated and hell-bent on calling out the things I found horrible and the people doing those horrible things, I tread more lightly. I try to avoid being reactionary. Is it really horrible? Are they acting out of malice? Is there a better way to deal with the situation? Where possible, I think avoiding directly rebutting another person’s words and instead presenting the evidence against a treatment is better than directly addressing another person. It took some hard knocks to come to that realization, but it’s one I’m working on doing.
I don’t want what I do to be a reaction to other people. I want it to be proactive and compassionate. I’ve written over the last year about how I regret the way I first approached the vaccine wars. Almost without reservation, I am disappointed in myself over what can be perceived as attacking people personally.
Over this last year, my time as a hospice volunteer has taught me how to just be there for families undergoing the worst times in their lives; I’ve learned how to accept without judgment the way individuals face their challenges. Being in a position where that’s my primary role--nonjudgmental support—has made me more reflective of my actions and beliefs. We all do the best we can with what we’ve got. Some of us face the challenges more adaptively. Some of us don’t. Some of us are great at putting on a mask and hiding our agony. All of us deserve respect and compassion as we go through our lives.
And it’s those experiences, coupled with Kathleen’s and my work at the Autism Blog Directory, that have changed how I feel about people on other sides of the “divide.” It’s a divide if we let it be, if we think there’s only one right path, only one right way. I’m tired of the divides, of the us-versus-them approach.
One of the best things I did was get involved in my local community. It meant wading into the local Autism Speaks to do it, and while I know intimately the objections many in the online world have towards the organization, working on the walk, meeting families who believe a whole host of things differently from me, forced me to let go of anger at people who choose what I consider, based on the evidence, to be pseudoscience. I backed up and shut up. In most situations, people don’t need to be directly confronted on their choices; it won’t make them change in the direction the other person wants them to. It simply entrenches them and deprives both parties of a chance for support, for genuine friendship, for growth.
I still write evidence-based pieces, but I refuse to be reactionary towards others in the community. Attacking others just makes their lives all the more difficult, and I really don’t like the idea that I’ve made someone’s day harder, that I’ve hurt someone who was already struggling. Really, the thought that my words could have pushed people further to the edge, deeper into woo, made them more bitter, angrier people makes me ashamed to have written those words, and for those I harmed, I’m sorry.
That doesn’t mean I’ve gone all soft and mushy with no clear positions. There are some things I am certain are wrong. There are people in our online community who I believe do tremendous damage to others and who, I think, do so intentionally with the sole purpose of getting ahead. I think those people are in the minority, though, and most people are doing the best they can. I think there’s a respectful, appropriate way to counter the woo and those who peddle it, and I work harder now to find that way.
Countering, my blog, has absolutely changed in the last 34 months. I think it’s a change for the better, and I know that how I approach things, how I handle adversity will continue to evolve. Do I miss the chances at snark? A little bit, but it’s just not worth it if that snark hurts someone else. My kids are watching me, reading me, looking over my shoulder. They’re out there, interacting with the world, and if I want others to show them empathy, compassion, patience and acceptance, then I must pave the way by being that kind of person. We must, I think, ultimately be the change we want to see.