What I am about to share may be news to some of my friends, but will be no new revelation to a great many others. I now know at the age of 30 what I have suspected for a number of years. It is time for me to emerge from the feigned comfort of a figurative closet, despite my deep longing to seek refuge, and to share with my family, both my biological family and my sociological family, that I live with autism spectrum disorder.
I’ve been reluctant to share this because I believe it will be perceived as me making a mountain out of a molehill. For some, the first thought might be, ‘No you don’t.’ Despite my desire for the opposite to be true, these folk are wrong. Others might think, ‘Well, we’re all on the spectrum somewhere, aren’t we?’ And while the latter may be true to some extent, I have been diagnosed as severely impaired (not a ‘weekend’ autism). This is a disability. I know that it might not appear that way at first glance. Unbeknownst to me, I have been struggling with this autism throughout my life. I have learned a lot about what is and is not acceptable in social interactions (and I still have much to learn). Some might think, ‘Well, don’t we all have to learn that?’ Once again, I would agree to some extent. But part of what makes an autistic person different is that we lack the social intuition that makes this happen naturally. A bicycle with a flat tyre might roll, but it won’t soon be carrying the winner of the Tour de France. I am grateful for the resources I have discovered to help me get by while seeming relatively ‘normal’. But because this is learned—something ‘put on’ like a jumper—I make mistakes. Sometimes my head ends up in a sleeve or I’ve put it on back-to-front.
My sisters and brothers (and those in between and outwith that dichotomy) who inhabit this strange world whilst living with ASD – though we represent a broad spectrum of ability, we are united in the extraordinary challenges we face and the extraordinary beauty that we embody. For myself, I’m not sure how much of that statement I believe with all of my heart, but I can say that we see the world in a very different way. Sometimes this world is frightening. Sometimes it is a world full of wonder. But it is always an alien world, perceived through a degree of social ineptitude and, for some of us, an oversensitivity to external stimuli that sets us apart from our neurotypical sisters and brothers.
In both the past and the present we have been social outcasts, but this strange world is our world too. We have a voice, whether that is one spoken aloud, through a speech device, or even uttered within our own minds. We are an invaluable part of the fabric of society – without us something essential would be missing.
To be clear, I am no way making myself out to be a spokesperson for all people living with ASD. I am new to this realisation and I can only speak from my experience. But who am I? That’s a difficult question for me to answer. I’ve spent my entire life learning to put on ‘normal’ (with varying degrees of success). I feel that I must do this because of the negative responses I have received for not behaving a certain way. So very much of what many people take for granted as natural practice within social interactions are things that I have had to learn and things with which I continue to struggle. It takes a massive amount of cognitive energy to maintain even a flawed version of ‘normality’. And I’m still learning. When a behaviour is not natural, I make some embarrassing—or even worse—hurtful mistakes. All too often I misinterpret what I am told. When I see someone has a new haircut—stop everything—I must tell them that I’ve noticed, even if they are midsentence. The same goes for other aspects of physical appearance – it’s not okay to point out every feature, especially when someone has a lazy eye or a new plook. When is it my turn to speak? When should I stop talking? Phone calls are a pretty horrendous. These things are just the very tip of my particular autistic iceberg.
Maybe you’re reading this and thinking, ‘There’s nothing unusual there.’ That’s kind of you. Please spend a few hours with me and tell me that I’ve not made any social errors – it’s a rarity. And when we meet, please don’t touch me unless I tell you that it’s okay.
So who am I? To be honest, I don’t really know. Maybe none of us can answer that question. For me, I don’t know how to disentangle fully the learned behaviour from the kernel of ‘Elijah’. When presented with of all of the opportunities set before me, it’s very easy to overwork, a vice if ever there was one. I’ve always had a tendency toward busyness. In the face of this busyness, there is a great need for me to refocus, to remember who I am as Elijah: the person, the disciple of Jesus. ‘Know thyself’, ‘γνῶθι σεαυτόν’, a pre-Socratic maxim featured in Western thought for several thousand years. It is not an unusual challenge. I’m working on it.
I’m not sure if sharing all of this is yet another faux pas, but I’m grasping at straws. I’m trying to make sense of it all. I need to figure out what resources there are to help me on this journey. And if you’d like to help, thank you. I need it. We need it. We need patience and understanding. We need respect and equality. We need love, even if we’re not the best at expressing it.
Lost in the Cloud 