Communication Shutdown

November 1st has been chosen as the date for the Communication Shutdown social media awareness campaign for people on the autism spectrum. The idea is to disconnect from Twitter and Facebook for a day to get a feeling for what it’s like for someone on the Autism spectrum.

Late last year, our son (E) was formally diagnosed as high-functioning autistic/borderline Asperger’s Syndrome (There’s some debate over where the line is drawn between a high-functioning autistic and Asperger’s Syndrome). We’ve known he was a little “different” for several years. He had certain obsessive behaviours. There were major communication issues. Refusal to wear particular items of clothing, or eat particular foods. Overreactions to loud noises. Overreactions to everything. Regular emotional meltdowns.

When he was five, we saw a child psychologist who ran him through a raft of tests and then officiously told us “He has autistic traits, but we don’t want to label him”. We didn’t want a label either. What we wanted to know what how to deal with him on a day-to-day basis, because the things that worked for our oldest son most definitely weren’t working with E. We walked away from that encounter discouraged and frustrated. We continued to struggle with the behavioural issues for another couple of years until new friends with two kids on the spectrum were able to put us in touch with a paediatrician, and a child psychologist who were able to help us, and ultimately gave us the diagnosis we’d long suspected.

The fun didn’t stop there, however. Our youngest shows a lot of the same behaviours. I’ve been holding out hope that she was just imitating her brother, but as time as gone by it’s seeming apparent that the behaviours are all her. Life with two kids on the spectrum can be complicated at times, but there’s yet another factor in play.

Early this year, the same friends who connected us with the people who could help lent us “The Complete Guide to Asperger’s Syndrome” by Tony Attwood. A two-inch thick tome about life with Asperger’s. It was a painful, enlightening read. Not because it showed me what E would have to go through as he grew, but because in reading through the book I understood what he was going to go through. It wasn’t just describing him.

It was describing me.

It was as if somebody had followed me around throughout my childhood, and written down all of the things that had happened to me. It was like somebody could read my mind, and had written down the way I think, my experiences with relationships, my internal dialogues. I read passages of it out to my wife, who responded “That’s you. That’s you. That’s you AND E. That’s E. That’s you.” For the first time in my life, I felt like I had a handle on who “I” was. Who I am.

I’ve had more than one person since then say “You don’t seem like an Aspie”. I look people in the eye. I normally respond appropriately to questions and in conversation.

In part, I have my father and a pastor to thank for that. When I went to work for my father in my early teens, he pushed me into dealing with the customers over the counter. I hated it, but I did learn to talk to people, and look them in the eye. I also bought a book by Allan Pease on body language which helped me learn to “read” people. In my late teens, a pastor took me under his wing and spent time with me just being my friend. He later remarked to me that when he met me, I talked about three things – God, computers, or Star Trek – and if the conversation wasn’t about one of those things, I would very quickly turn it into one of those things. He spent time “teaching” me to communicate like a normal person.

I find social interaction extremely exhausting. I crave having close friends, and being part of a community, but the amount of energy that takes is enormous. I don’t “get” relationships. I’ve never been good at making or keeping friends. I’m mystified by the apparent ease at which people relate to each other.

See, when I’m conversing with someone, I’m constantly assessing what they say. Trying all the options to interpret what they might mean. I’m glancing at the way they stand, what they’re doing with their hands and feet, where they’re looking. I’m calculating if I’m holding their gaze long enough, or for too long. I can talk, but two-way communication doesn’t come naturally. If you talk to me for any length of time, I’ll say something… inappropriate. Not in a crude sense, but I’ll overshare. I’ll tend to stick to one of a few topics of conversation, even now.

When I go out socially, which is pretty rare, I spend the trip home rehashing everything that happened. Every conversation, trying to work out if I said the wrong thing, if I overtalked. Inside my head, I have a library of responses for social situations. Most of the time, I feel like I can pull the right one out in the right circumstances.

I don’t understand how to make a lasting friendship. I have a string of ‘failed’ friendships behind me – people who I thought were my friends who just stopped. In the majority of those cases, I was the one who always initiated contact, and when I stopped, so did the ‘friendship’. If that’s what it was. I don’t really know. I do have a couple of good friends now, although I still don’t understand quite how or why.

Communication isn’t the only issue that people on the spectrum have to deal with. I share many traits with my son. There are particular clothes that I own that I can’t wear. I can’t explain it other than to say they just feel wrong. If something catches my interest I can become obsessed with it (most recently I watched all three seasons of Chuck in every spare moment I had over an eight-day period). In a loud and noisy or busy environment I become overstimulated; spending more than a couple of hours in a busy shopping mall leaves me on the verge of a meltdown (and has pushed me over the edge on more than one occasion). All the people and the visual noise just become too much. Forget something like a stadium concert or a Big Day Out.

My wife gets to live with someone who can disappear into an obsession for days or weeks. I miss subtle (and not-so-subtle) hints. I can’t read her emotions, and am often emotionally unavailable. Not because I don’t want to be, but because I don’t know how to respond. Things get left undone around the house, not because I’m lazy (although I often am), but because they just don’t occur to me until they’re pointed out. All the nice and wonderful spontaneous things that a husband should do for a wife, I have to try and think of, and then plan out. Kind of takes the edge off the idea of “spontaneous”.

The thing is, unlike my son I don’t have a formal diagnosis of Asperger’s Syndrome (AS). 74% of children on the autism spectrum have a first degree relative who is also on the spectrum – that doesn’t necessarily mean that I’m it. It’s also expensive and difficult for an adult to get a diagnosis. One of these difficulties is that most adults with AS have learnt so many of the necessary coping mechanisms to disguise their AS and fit in, they seem pretty normal on the outside. On the inside though, I feel like I’m on the wrong planet. I was seeing a psychologist who agrees that AS is a good fit. For me the most telling part is that even if I’m not AS, the strategies that work for adults with AS dealing with the world around them work for me.

Twitter, and Facebook to a lesser extent, make me feel like I’m connected. Like I’m “normal”. Sometimes they magnify my sense of disconnectedness, like everyone’s in on the joke except for me. I see people talking about other twitterers and relating their shared experiences, and I want to be a part of that world, even for a moment. To feel like I belong. Even when I am part of an experience though (MTUB meetups, for example), I still feel like I was on the outside looking in. I’ll twitter from the event because that’s what everyone else does.

I honestly don’t know if the Communication Shutdown is a good or bad thing. I’m not quite sure what difference it makes. Yet another social media awareness campaign amongst every other social media awareness campaign. It feels like the 21st century version of the AIDS awareness ribbon. At some point they all start to blend together, and I think people become jaded.

For me, I don’t need to disconnect from Twitter and Facebook to understand what it’s like on the autism spectrum.

I already feel disconnected.

  • I loved this piece. Thank you so much for sharing your experience. I have 2 kids who are on spectrum – aspie, high functioning, one v high intelligence and one not. My partner sounds alot like you. His father definitely on spectrum. Getting my 1st boys dx helped me to understand my husband, to understand that socialising is actually painful for him. I have one NT daughter, and a 4th child who is a wait and see! From my experience at least aspergers seems to be very much genetic.
    All the best, Michelle

  • Not to make light of any spectrum issues, but I think most people struggle with all kinds of relationships and what it takes to make them work. I know I do, and I’m considered by everyone to be sociable and out-going, on the rare occasions I go out. My husband sometimes nudges me with remarks like “I think you’re spending too much time in your own head.”

    People are a complete puzzle to me most of the time too. Why they do the things they do, say the things they say, and what they expect of me. I think that is part of the so-called human condition and, to a certain extent, everyone struggles with “performing” on an acceptable level and connecting with other people.

    Autism seems to be something everyone talks about, but few people have any real understanding of the daily life of someone on the spectrum (which is a term I’ve never heard before). Thank you for this very enlightening, well-written post. I look forward to seeing you around.

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  • Warwick, I’m so proud of you. What a brilliant piece of work. As an active participant and donor to the Communication Shutdown campaign, I was fascinated to see the variety of responses out there. From people who know nothing about autism to those who have autism and/or have loved ones who do.

    I look forward to hearing of the actual results from the organizers of the campaign. But, I will say, getting to meet people like you and read your personal story like this is truly a win for me from this campaign.

    Cheers,
    @marismith

  • Warwick,
    Thank you for this post! I have a daughter with Aspergers and I give thanks everyday for having her in my life…just the way she is! She has opened my eyes to the differences in all of us and how we need to be less judgmental and more accepting of others.

  • I started writing a long response here but thought it would go better in an email, or better still in a cuppa next time I’m in Melbourne.

    I would hope we would be friends regardless of twitter. Oh and I had best be off to kick your butt in words 😉

  • Thanks for sharing your experience and journey Warwick. What an entertaining piece of article. Certainly helps me understand more of the people on the autism spectrum. My brother sounds a lot like you, and has always suspected to have autism. I feel that I need to read up more about this so I can understand more about my brother and friends who are on spectrum too. Love, Kitty x

  • @mzjaygee

    This is a brilliantly written piece Warwick. Thank you for sharing your thoughts and feelings.

    I’m glad you mentioned “The Complete Guide to Asperger’s Syndrome” by Tony Attwood. That book also changed our lives after our son was diagnosed with AS 10 years ago. Not only did it help us deal with my son but when my mother read it, it helped her understand her husband and after having him formally diagnosed with AS helped their marriage as well. Knowing what you’re dealing with is half the problem solved. It didn’t make my son change but it helped us change how we viewed him and his world. I highly recommend this book.

  • Mitchell Hall

    HI Warwick. You might also want to check out a book called ” Born on a blue day.” It’s written by a guy who has aspergers.

  • John Palk

    Waz, I have known you since primary school and consider myself very lucky to count you amongst my friends. I want you to know that I do not count our friendship as one that has failed; I know we only speak every few years or so, but that is because of my problems with staying in touch with people as much as anything. Know this, although we rarely talk, I think of you often and our frienship has always been very special to me.
    P.S. I am up for a talk about God, computers or startrek anytime you like.