No, I'm not going silent for autism

I won't be participating in the Communication Shutdown for autism, scheduled for November 1. The background is that this is an attention-getting maneuver to gain donations for some autism cause. As I understand it, if you donate, you get a CHAPP (charity app) and badge to use that day for your Facebook and Twitter accounts. This app, according to the FAQ for this initiative, has "quite a few tricks" that include interacting on its own with your accounts and placing your avatar in a mosaic "where you can see yourself next to celebrity supporters." The initiative was begun by an Australian foundation that focuses on early interventions for children with autism. Looks like a great foundation, from what their Website indicates.

That said, I won't be participating in the shutdown, and here's why:

1. Autistic people do communicate socially. All the time. Regular people just have a hard time figuring out what the autistic people are trying to get across. Indeed, from what I understand, the WWW and its social interaction offshoots that don't require in-person translation have been a boon to autistic people in general.

2. I don't see this as a parallel to autism. The Communication Shutdown site says:

Social communication is one of the biggest challenges for people with autism. By choosing to shutdown your social networks for one day, you will have some idea of what it's like for people with autism who face this challenge every day.

Rachael Harris, a counsellor and supporter, who herself is on the autism spectrum, put it best when she said, "Electing to shutdown social communication mirrors autistic silence. But it also draws attention to the isolation and intense loneliness experienced by those who are impeded from connecting socially with others. The CHAPP is a powerful way to create a sense of empathy towards those on the autism spectrum."

I just disagree with this entire statement. I don't think that shutting down tweeting and facebooking in any way reflects the social challenges my son experiences on a given day, and I suspect that it doesn't reflect the nonverbal experience, either. I don't know what "autistic silence" is, unless it indicates an absence of spoken communication, but I know that autistic people--verbal and nonverbal--communicate all the time and are certainly not silent. The empathy doesn't need to be about their lack of a typical route of communication but about understanding the routes they do use.

3. I can't tell where this money is going or what it's supposed to do once it gets there. The Website information is extremely vague:

This fundraiser is powered by the people. By spreading the word through social networks, we are able to keep costs to a minimum. This ensures the maximum amount possible will go to autism organisations around the world.

As this is the inaugural Communication Shutdown, we are unable to provide a percentage of fundraising costs at this stage. However, we are committed to full transparency regarding costs and these will be published at the conclusion of the campaign.

4. They've got a lot of partners, some of them worthy. So, send your money straight to the relevant partners. Why use a third party? That way, you know exactly where your money is going.

5. I don't like gimmicks. I don't like the pink ribbons that don't actually make anyone terribly aware of the realities of breast cancer, and I don't like gimmicks especially that don't seem particularly closely linked to the needs of the target population. I can't see how silencing my own voice helps my son or any autistic person be better understood. It's gimmicky and, I think, shallow. It may be that I'm too enmeshed here and that for people who don't know autism well, it's an attractive entry to understanding it better. I just disagree that this translates into a real understanding of autism.

In conclusion, as my clients often write, I can't think of a good reason to silence my own voice on that day. If others choose to do so or if others are attracted to the cause because of this gimmickry and money--some of it, anyway--is funneled to a useful autism organization, then that's great. But I don't think that silencing my participation in social networks--especially for my participation in The Thinking Person's Guide to Autism, this blog, and End the Bullying, is going to do anyone any good. And, as I realize more and more every day, my overflowing desire--the one that's dousing the embers of my burning mid-life crisis--is to be of some good to someone in the world. Each of us in our own way, that's what we should do. For me, that means continuing to use my words.