Autism badly served by “Communication Shutdown”

Am I the only person offended by tomorrow’s “Communication Shutdown”.

The campaign website says the event is a global initiative to “raise much-needed funds for autism groups in over 40 countries. By shutting down social networks for one day on November 1, we hope to encourage a greater understanding of people with autism who find social communication a challenge.”

So, this slick PR campaign encourages people to raise funds and awareness by superficially mimicking the social isolation experienced by those with autism. This tribute-form of autism is to be manifested apparently by swearing off Twitter and Facebook for a day.

Did no-one give this campaign a test-run before launching it globally? Did no-one wonder whether this clumsy attempt at empathy would be perceived as counter-intuitive, patronising and offensive?

Social media is in fact a godsend for childen and adults with autism, as well as their families and friends.

Jean Winegardner’s son Jack has autism and she blogs on Autism Unexpected. I was particularly taken with the blog Jean wrote on social media and autism earlier this year. Jean said:

It’s easy to make fun of social media. How many ways do you need to broadcast what you are doing right this second? For parents of children with autism and people with autism themselves, however, social media can be a lifesaving conduit to a social world that is too difficult to interact with IRL—in real life. For people like us, social media is real life. Having a child with autism can be extremely isolating. Friends who don’t understand what you’re going through or who don’t want to be around a difficult child may fall away. It gets harder to take an unpredictable child into public. It can be hard to plan playdates ahead of time if you don’t know how your child will be feeling at a specific time in the future.

Activities that typical kids enjoy may be too overstimulating for a child on the spectrum. Sometimes even when your child wants to and is capable of participating in the social sphere, the invites just don’t come. Some days it’s just too hard to face the stares and judgments of onlookers, so parents end up staying home.

This is where the beauty of social media lies. When there is no one in your life to turn to in the middle of the day (or the middle of the night), Twitter is there. When you have a question about a treatment and you want to know others’ experiences, blogs are there. When you just need some adult contact to take your mind off of all that is so difficult, Facebook steps up. For people on the spectrum themselves, online communication eliminates the pressure to respond immediately in conversation and lets an individual choose what conversations they want to take part in. Web conversation is also more black and white, reducing the need to understand all the non-verbal parts of communication that can be so difficult for those with autism.

Undoubtedly, the organisations that research autism and provide support to families coping with autism would benefit from greater public awareness and better funding.

But is abstaining from social media the right mechanism to achieve this and does it send the right message?

The Communications Shutdown campaign would appear to be yet another philanthropic gesture badly advised by PR and social media “experts”. I place the Generation One campaign in the same boat.

Tomorrow, let’s raise awareness of autism by reading blogs such as Jean’s and tweeting them to others in our Twitter communities. I truly believe more will be achieved by doing so.