Wednesday, October 3, 2012


As parents of autistic kids, we’re used to being judged. But you know what? I’m tired.

Tired of people who know nothing about my life telling me that I’m doing it wrong.
Assuming that they know what I’m going through.
Telling me which words to use.
Trying to sell me on a therapy or cure they just read about.
Thinking they know what’s best for my kids.
Making me feel excluded from a club.

No, I’m not talking about parents of neurotypical kids. I’m talking about the online autism parenting community.

Sure there’s nothing like the support that comes from discovering that other people are going through the same stuff that you are. To find friends and comfort and advice from someone who could have stolen the words right out of your mouth. But there’s more to a community than sharing cartoons of retro housewives with pithy quotes in a cool font.

A community should be a place where people feel safe.

Safe to express opinions.
Safe to share experiences.
Safe to make their own choices.
Safe to change their minds.
Safe to rant on a bad day.
Safe to enjoy a good day.

This community doesn’t feel safe, and some days I want out.

There’s a not-so-silent war raging across autism blogs and social media, and it has nothing to do with funding or awareness. Parents who speak their mind are being attacked no matter what their stance - those who admit that autism sucks are ‘insensitive’, those who embrace acceptance are ‘unrealistic’. Low-functioning vs high-functioning. Autistic vs person-first. Jenny McCarthy vs science. There's no room for disagreement, no spectrum of opinion allowed. Whether you contribute via your own blog or comment on someone else’s, it’s becoming almost impossible to speak without upsetting someone, no matter how benign the topic.

For a group who seek tolerance... why are we so quick to turn on each other?

Yes we’re all emotionally raw, frustrated and tired as hell. Advocacy is our life and that probably makes us a naturally opinionated bunch. But why can’t we seem to agree to disagree?

Because somewhere along the way the focus seems to have switched from providing mutual support to sending a unified message. There’s pressure to share a single view of autism with the world, and in the process our opinions are not ours to own - they belong to Autism and therefore must represent everybody. We’re not allowed to describe what life’s like for us, at the point where we’re at or where our kids are on the spectrum, without others jumping up and down and yelling “you don’t speak for me!”

So instead of a strong and supportive community we’re fighting amongst ourselves to be heard. To become the one true voice that we never needed in the first place, because there is no unified experience of autism.

I want to be part of a community that feels safe. I want to have intelligent conversations about what works and what doesn’t and why it’s hard and how not to go insane without having to wade through political bullshit or feel like I’m stepping on anyone’s toes.

I don’t want to feel afraid to ask for help from the only people who can give it to me.

I want to want to be here.