It was great to hear ASCs being discussed so widely in the media on Monday following Susan Boyle's revelation (that wasn't particularly surprising) that she's been diagnosed with Aspergers.
So many feelings and experiences that people spoke about resonated with Ethan and I - particularly the relief that people felt after a diagnosis. How that one confirmation had given an explanation to so many feelings and behaviours and how, armed with knowledge, people could begin seeking advice and support and come up with strategies for getting the best out of life. For me, the diagnosis was also a turning point in reassuring me that I wasn't married to a willingly rude, insensitive, uncommunicative man but to a man trying amazingly hard and doing amazingly well to be the best husband and dad he could be in a world that is confusing and overwhelming and exhausting all of the time. Also, the lack of support people spoke about, particularly for adults with Aspergers, was something that we related to. What wasn't mentioned was the lack of support for neuro-typical partners of people with an Autism Spectrum Condition. These are often the people holding it all together - supporting the person on the spectrum as well, often, as managing other people's expectations including children's. I wonder if, with support, more Asperger/neuro-typical partnerships could survive and even thrive.
The discussions and phone-ins I heard on the radio also highlighted something I hadn't thought about before: the appeal to many with Aspergers of the social media. The amount of time that Ethan spends on Facebook and Twitter (and just generally on the Internet) has long been a source of strife between us. Having worked all day within the field of media, he'll come home and immediately grab the ipad. He'll have one eye on Facebook (if he can get away with it) whilst reading the boys their bedtime story. Despite the fact that he's surrounded by four real-life people willing, able and wanting to interact with him face-to-face (and maybe because of it) - he'll chose instead to engage with faceless people online. I've nagged and pleaded with Ethan for years to spend less time online and more time with real people. I've even, inadvertently, got the kids on board so that they'll shrill out 'Mummy - daddy's on the iphone' whenever he attempts to have a sneaky look when he's supposed to be doing something with them! But nothing's changed. In fact, as the social media world grows so, it seems, does its grip on Ethan.
The comment was kind of made in passing on the radio on Monday that, of course, people on the spectrum enjoy social media because it takes away the intensity of the person standing in front of them, it allows time for the person with autism to process what's being said, it minimises misunderstandings over tone of voice and facial expression. In short - it creates an equal playing field on which people with autism can communicate with others. And, in Ethan's case, I think it helps him to feel connected and normal and as though he's got friends. And I know that, in a sense, this is a kind of friendship -but on a fairly superficial, artificial level. I find it all pretty unsatisfying but it seems, this is just what Ethan needs and at the level he can handle. And I guess cyber communication is better than no communication. So I'm trying not to nag quite so much, not to sigh quite so loudly, and not to pointedly look over his shoulder when he's chilling with the ipad. I might draw the line if he starts messaging me on Facebook over dinner though!
Next time: How my partner's Aspergers Syndrome affects the kids: part 2