Autism Unexpected: Social Media and Autism: A Life Line


Social media is all the rage these days. Twitter, Facebook, Foursquare, Digg, StumbleUpon, Kirtsy, blogs, and the myriad of other ways that individuals around the world connect online these days have changed the face of the world.

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.

I started blogging coincidentally at almost the same time I started to suspect that my son Jack was autistic. I know for a fact that my and Jack’s paths would have been radically different without the social media to which my blogging introduced me. Social media helped me get to the accepting, knowledgeable place I am far more quickly than I could have gotten there myself.

There is a lot of division in the autism community—and the autism social media community is no different. Much of what I initially found online terrified me. But more than that, I found people like me. I found women going through exactly what I was going through. Even more importantly, I found women who were a few steps ahead of me in the autism journey. Not only will you find support for yourself if you put yourself out there, you will often find that you are offering comfort to those who follow you.

There are a tremendous number of autism bloggers who offer comfort, ideas, and practical advice. While I would not recommend taking as gospel anything that you read online in terms of treatment or medical advice, I will say that with a little bit of work you can find a supportive group of parents who can help hold you up.

There have been times that I haven’t felt confident in my knowledge about developmental disabilities and have had my tribe of online friends reassure me—and offer me practical advice. There have been times I have felt destroyed by something that happened at my son’s school and have had that same community help me hold it together. Some days that happens on my blog, some days it happens on twitter, but regardless, I know that if I need someone who gets—really gets—what I am going through, they are there almost immediately. This is something that is very hard to find in real life.

There are, of course, dangers with publishing so much information online. You have to be careful about your own privacy and that of your child. Many people write anonymously for this very reason. Needless to say, you should assume that anything you write online, even without your name attached, will be found and attributed to you. Just as the best things about social media are its sense of community and interconnectedness, those very things can turn into negatives if you write things you wouldn’t say to someone in person.

I try to write as if the person I am writing about is standing behind me, reading over my shoulder. This includes teachers, administrators, and a potential court of law. Understand that if you do take advantage of this incredible online resource, your words are permanently available should you have need to sue the school district or even go through a divorce.

The down sides are strongly outweighed by the benefits if you use these social media tools carefully. In a very real way, social media matters. Blogging, Twitter, Facebook, and the others can be a very real lifeline that is inaccessible in your concrete life. Online friends are real friends. Sometimes the fact that you spend time and effort invested in these social media arenas without tangible paybacks obscures the fact that you are getting something far more valuable: community and support.

Originally posted at Autism Unexpected on May 30, 2010.