Autism Watch: 2007

Sharing in the Autism Community: Really?

Posted on: November 7, 2009

When my son was dx’d initially, online communities saved me. My husband was in serious denial, and I didn’t know anyone offline that had any experience with autism, so I spent hours seeking out help, support, information, anything. I was one of those people who knew nothing about ASDs, as even with all my son’s issues, we assumed that at worst, we were dealing with Sensory Integration Disorder, so we started this with absolutely no clue. I was desperate to find people who knew what we were dealing with and could give us some guidance, and email groups were it.

Since then, there have been numerous times I’d turn to the online communities for help — referrals to providers, opinions on therapies, suggestions on handling situations, or just “I know how you feel.”

But this week? I feel like the time has come for me to step away. I want to stay on top of what’s going on in the community at large, such as research, news, events, etc., but I can do that without being actively involved in email groups. I unsubbed from five groups yesterday, and while I felt just a tinge of sadness, I was overwhelmingly relieved. I felt, and feel, enormously liberated, and I am even more glad I did it today than yesterday.

Lots of things contributed to the decision — not just one event, though it was one email that finally pushed me off the fence. Over the years, I’ve seen a lot of emails that make me shake my head. I can participate by stating something that’s going on and get no response, and someone else two minutes later can say almost the same thing and get nine sympathetic responses. That’s the nature of the online community, as timing is everything and people respond when they’re available, but it’s disheartening when you feel invisible. I’ve seen new members get jumped on for asking basic questions. A lot of people ask about the flu vaccines; some of those people are welcomed while others are borderline attacked or get posts implying they’re simply not educated for even considering the vaccine. Some people want to debate when all you want is information or share your opinion on someone else’s. Basically, any response you make is fair game for attack anymore, and it didn’t use to be this way. I’m not sure what’s going on in the autism community, but the divisiveness that used to be focused on biomedical vs. traditional is growing. We as a community want the freedom to do what we want with our children, as in “How dare they try to make me vaccinate!!” but we turn on each other so quickly. I’ve mentioned it before, so I won’t digress but I wonder what it’ll be like in another six months. Where will parents of newly diagnosed children go then?

Don’t get me wrong — not every group is this way. There are wonderful people in the community who will still take the time to guide, support and give a virtual hug, but there are many people who will tell you you’re wrong, make assumptions about what you’ve said/done, and give you a virtual snub. Be careful what you share online. You can only explain your concerns or situations in so many words in the written form, and it can and will be open to interpretation by anyone that sees it. Responses can be harsh, even if you’re in the worst mood to deal with it. If someone has made a judgment about you, such as “not biomedical, not doing enough,” the responses you get will be tempered by that pre-formed opinion.

It’s like any other group, online or off. I’ve learned I just don’t have the time anymore to engage. I don’t want to read the arguments regarding what group to donate money to, I don’t want to read about how disgusted people are that others in the world dare to believe in a flu shot, and I can’t take one more whine from a previously stay-at-home-mom who just started getting IHSS a few months ago and is home all day alone while her kids are in school yet is peeved that IHSS rates are less. Or how we working moms get “respite” while we’re at work all day, yet it’s our tax contributions that are paying for respite for others. Life is stressful enough, I don’t need to have it added to and when I found myself hitting “delete” more than “read,” I know it’s time.

Don’t let my opinion sway you if you’ve never been in an online community and want to give it a shot. Really, they aren’t all bad. But, be cautious. Consider what you’re looking to get out of responding, and what you can live with. Be prepared for negativity, and don’t give identifiable details. I used to answer just to join in, then I realized how much time I was wasting — I work, I have a job and my time is at a premium, so if I want to join in a conversation, I have other opportunities with people I actually know and trust. That’s the problem with the online world, it’s easy to feel a part of the group and easy to feel you can trust people because ‘it’s just words.’

I’m going to save my words now for my anonymous blogs, for my offline friends, and for personal emails between individuals. It’s truly liberating to realize how much time I’ve saved myself and how I no longer need that kind of communication. And I’m realizing that wisdom does come as you get older! Who knew I’d ever really believe that cliche.

Now I’m signing off to see if I can calm the little guy. He’s getting some serious anxiety over waiting on someone to arrive, and I need to help him work it off or he’s going to be an overstimulated bundle of nerves.

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