Going Deep, Deep Underground

We feel like we owe you an explanation.

First, let’s be honest. Autism Underground was a somewhat selfish undertaking. It allowed us to vent and discuss issues that we may not have been super-comfortable addressing (for varying reasons) on our own blogs. That is true. But the catalyst was an anonymous comment submitted on one of our blogs, and the resulting discussion.

See, the blogging/facebooking/twittering autism community, sadly, can be quite divisive. When we work together, cool things happen like Autism Positivity and Autism Shines. However, we also can find ourselves at odds with ourselves, as we try to reconcile our different worldviews on autism.

Autism Underground is meant as a safe place to share snapshots of the emotional parenting journey unique to the autism (and special needs) community.

In the beginning, we had a lot to say – sometimes even twice in one day. Some of these stories must have been bubbling up inside of us for years!

While we still have stories to share, we struggle to find the time, emotional courage, or even simply the motivation to keep posting.  Oh, we still might put something out there every once in a while, but we won’t be updating this site very frequently (obviously!).

However, we still believe in the concept. Autism Underground has connected us with inspiring, sometimes struggling parents who feel at home here. Some have even posted, and perhaps have no other place to participate in these types of discussions.

So the Underground will stay put, as long as we all agree that sometimes we might go deep, deep underground. We'll remain here for you to explore our thought-provoking posts of yore, or to submit to us your own burning stories. We hope you’ll continue to check back in occasionally, but do forgive us if we’ve been a little slack.

Meanwhile, while some of our writers have chosen to remain anonymous, a few of us have shared links to our own blogs (ahem!), and with a few clicks, you can find our blog rolls featuring a plethora of excellent blogs, resources and actual humans to support you along this journey.

In fact, all we really want to say can be summed up in these four words: YOU ARE NOT ALONE.

P.S. SEND US YOUR POSTS: AutismUnderground@gmail.com

Lucky

Wednesday the school held its annual Halloween parade; the entire school, about 450 kids, teachers, staff and parents gather on the yard for dancing and celebrating in costumes. This is our 6th year at the school and I've been to every one, and during every one the crowd and the noise and the celebrating is too much for my son. He has spent the time either lying on the concrete, legs outstretched, with his head in my lap, or he escapes to the area on the yard where there are no other people. He's only allowed to "escape" if there is another adult with him, and in years past there hasn't always been somebody. I've been there every time, but I've been stuck to my other (NT) child, who would cling to me and cry and not let me leave his side.

This year, my younger child was fine with being with his friends and his class, so I was able to take my older son to the empty area on the yard, where it was quiet and empty and still. I sat there on the bench and watched him run back and forth, flap his hands, jump up and down and whisper to himself, and I was struck by something I'd never felt before: Pride.

In years past, I may have been upset to be separated from the crowd and all the fun, or I may have felt uncomfortable by having singled myself out, forced to the outsides because my autistic child didn't like the crowd and the noise. I may have felt sorry for myself because autism was forcing me to be an outsider when, by nature, I am not an outsider. This year was different, though. I was glad to be outside from the crowd, because it was what my son wanted. I'm sure he wasn't the only kid there who didn't like the crowd, but he was the only kid who was able to escape from it.

I was proud to be the only parent there who had a child who stimmed.  I felt like I was part of a special group that's not like the rest of them; a better group, a more awesome group. We're lucky, because we've got autism. I'm sorry the rest of you don't.

Judgment

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.