Life on the Spectrum

Autism and Social Media

(This is the text of a speech I made in February 2011 for the Idea Wave conference in Victoria, B.C. It was in response to a campaign by various celebrities, and some non-celebrities, to “go silent” on social media for a day in order to raise awareness of the “isolation” of autistic people.)

My name is Iris. Some of you may know me online as rainbow_goddess. I use social media a lot. I have accounts on Twitter, Facebook, LiveJournal, Insane Journal, You Tube and yes, even MySpace.

What you may not know about me is that I am autistic. I was diagnosed with Asperger’s Syndrome, an autism spectrum disorder, when I was in my 30s.

A few months ago there was a particular day when people were encouraged to stop using social media for an entire day. The purpose behind this was apparently to show support for the “isolated autistic people” in the world.

While I’m sure this was done with good intentions, I think that the people who did this missed a very big point. That point is that social media has helped a lot of autistic people become less isolated.

First of all, let me explain what I mean by “autism.” The Wikipedia definition of autism is a spectrum of neurological disorders characterized by impaired social interaction and communication. Autism is indeed a spectrum: at one end, you have people who are developmentally disabled, who have low I.Q.s and who cannot take care of themselves. Many are non-verbal. At the other end, you have Asperger’s Syndrome and high-functioning autism, which include people who can live independently and hold jobs but who have trouble making friends and understanding social situations and are often labelled quirky or eccentric.

There are many stereotypes surrounding autism. When I tell people that I am autistic, they don’t always believe me. They point out that I have a job, I have friends, and I have a partner. I’ve been told that I seem to be unusually social for an autistic person. Doesn’t everybody know that autistic people don’t want to have friends? Don’t we all want to live in our own little worlds and not have any interaction with other people?

Well, whether you believe it or not, I am most definitely autistic. I have been fortunate to learn life skills, communication skills and employment skills from some very kind, wise and helpful people. Not everyone on the autism spectrum has had that privilege.

The truth is that just like everybody else, many autistic people do want to associate with other people. We do want to have friends. We do want to have romantic relationships and maybe get married someday. Certainly, there are some autistic people who don’t want this, but there are some non-autistic people – what we call neurotypical – who also don’t want this.

The problem comes with that whole area of “impaired social interaction and communication”. Most of us have a lot of trouble interpreting other people’s behaviour. We can’t read facial expressions or body language. We can’t tell what another person means just by their tone of voice. Non-verbal communication is a mystery. If someone lies to one of us, chances are we’ll believe it. If someone is being sarcastic, we’ll take them at face value and not realize they are being sarcastic.

Autistic people often have very sensitive hearing. Background noise makes it worse, and because of that, I’m less likely to want to spend time with people in a noisy bar or somewhere where there’s loud music playing. This has caused me to be accused of being anti-social in the past.

On the internet, there isn’t any body language to read. There are no facial expressions. There is no tone of voice. There is no background noise to mess up your hearing. The most you can expect is an emoticon with a smile or a frown to tell you whether or not a person is joking. This makes communication much, much simpler. If someone sends me a message on Facebook, I don’t have to spend time wondering exactly what they are trying to say. There are no non-verbal cues to sort out. There is less pressure to respond instantaneously, so there is more time to figure out what I want to say.

Since I started using Facebook a couple of years ago, I have more friends than I ever had before. I spent a long time – probably a couple of years – wanting to ask my co-workers if they wanted to go out for coffee sometime, but I was much too shy. I was even too shy to ask them for their phone numbers or email addresses. But after we added each other on Facebook, I was able to send them messages saying things like, “Hey, would you like to go have a drink on Friday after work?” Now we see each other regularly outside of work, and we are friends instead of just co-workers.

I spoke to a teenage autistic boy recently who told me how he had added his classmates as friends on Facebook, and they invited him to go to the movies with them. This was a big deal for this boy; up until then, he’d never had friends to go to the movies with. Now he hangs out with them all the time. He credits Facebook with helping him make friends.

Social media also helps autistic people meet other autistic people, which can be especially helpful for people from small towns or isolated places where they may not be able to meet others in person. When I first learned that I had an autism spectrum disorder, I didn’t know where to find other people like myself. I used the Yahoo Groups website to find email lists, and then I joined Live Journal.

I want to talk about Live Journal for a moment. Live Journal is a site where you can keep your own blog and also join “communities” of users with a common interest. I joined the Asperger community – Asperger’s being a form of autism, as I said – and suddenly I was with people who were, if not just like me, a lot like me.

One of the most common posts on the Asperger LiveJournal community is called “Does anybody else do this?” It might be, “Does anyone else have trouble figuring out what other people want?” or “Did anyone else pick up toy cars and spin their wheels round and round when they were kids?”

It was so amazing to me when I found that there were people out there who were like me, who did the same things I did, who had the same kinds of social problems that I did. It meant that I was not alone. That’s a big thing, knowing that you’re not alone. I was finally able to stop blaming myself for the social mishaps that I kept getting into when I was a kid. They were not my fault.

Social media is also extremely important for the parents of autistic children. Parents find that they are often unable to schedule such things as playdates for their autistic children because these children may simply not be the “playdate” type. There is no way to know ahead of time how an autistic child is going to react to various stimuli – smells, sounds, lights, or colours – in someone else’s house. It is hard to know what is going to cause an autistic child to have a meltdown. Maybe the parent is afraid of being judged for what other people see as abnormal behaviour in their child.

These parents can find help and support from other parents in online forums, discussion boards, chat rooms and blogs. They can discuss parenting, vent their frustrations, and compare notes on how to do what is best for their children. As with autistic adults, they can use social media to find that they are not alone.

Another valuable way that both autistic adults and parents of autistic children use social media is in finding people to meet with in person. A few years ago I joined meetup.com, and I wound up running a meetup group for adults with autism or Asperger’s Syndrome in Greater Victoria. Once a month a group of us meet in a local restaurant for food and conversation. There could be anywhere from eight to 18 of us, but most meetings average about a dozen. We share stories with each other, share common interests, form friendships and sometimes try to help parents in figuring out their autistic or Asperger children.

There is a misconception that only very high-functioning autistic people and people with Asperger’s use the Internet and social media. This isn’t the case. I am friends with people online who are considered to be low-functioning. Some of them write very eloquently in their blogs but seldom speak at all in person.  There is a nonverbal autistic woman called silent miaow who has her own channel on YouTube where she shares videos about her life as an autistic person. She communicates using a speech synthesizer.

To sum up, I would say that if it were not for social media, I would be very isolated. I would have few or no friends. I wouldn’t have met an amazing group of people from all over the world who are united by something that most people see as negative – autism spectrum disorder, or Asperger’s Syndrome. I wouldn’t have gone out for drinks last Tuesday night with my friends Amy, Anne, Glenn and Dan. I wouldn’t have gone over to the mainland to meet my friends Chandi and Josie for lunch on Granville Island. I wouldn’t be supporting, and gaining support from, the people in my Asperger meetup group. I definitely wouldn’t have gone to a karaoke Tweetup last month!

At any time of day or night, if I need to talk to someone about problems I’m having, I can go online and start a Twitter conversation by using the hashtag #asperger. I can make a post in the Asperger Syndrome LiveJournal community. I can send a message to a friend on Facebook. I would probably never pick up the phone – I’m much too shy for that – but I can still communicate with people no matter where they are. That is why social media is important to me as an autistic person.

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Comments on: "Autism and Social Media" (1)

  1. This post makes me want to cry. All of my friends are cyber-friends. Even people I know in real life I keep in touch exclusively via facebook.

    I desperately need my online community. If it wasn’t because of that I would’ve probably pull the plugged a while ago. Interestingly, given that I have interests that I pursue obsessively, I have met a number of unsuspecting aspies that way. They have no idea. But I’m sure they are. They’re always online and the obsession is their entire life.

    Anyway, great post.

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