No, I’m not Rain Man, I’m not a mathematical genius. No, I can’t draw London from memory, or recite Pi to a million places. I’m just an ordinary mum. I do crafts, walk the dog, hang out in coffee shops with my mates, rant on Facebook about the wrongs in the world and have an obsession with romance fiction.
I’m probably not all that different to you.
And I want the same things you want: the love of family and friends, a comfortable home, people who understand me and a sense of place in the world.
I’m not a psychopath. I do care - possibly more than is good for me. I am not ‘lost in my own world’, nor was I ever, except for my love of day-dreaming. I don’t particularly lack empathy, although I do sometimes struggle to ‘get’ people I don’t know well, and I am terminally incapable of taking a hint.
I’m not insane and I’m not stupid. Well, I have a degree in political science and I’m not delusional (as far as I can tell).
And I’m not exactly like other autistic people, and they’re not exactly like me. I’m unique, like everyone else, as the Internet meme goes.
So what is it like to be autistic, people ask me? Well, for a start, I’ve never been anything else, so that’s kind of difficult to answer. I might as well ask my dog what it’s like to be a dog. Even if he could talk I doubt it would be enlightening. When has he not been a dog? But it did occur to me I could share with you a little of what my life is like:
Emotionally, my life comes in waves.. Despite my autism, I like people. I like getting to know new people and finding out about them and what we have in common. But I can get socially isolated if I don’t watch myself, and bored and understimulated.
So I wake up one morning and I think “Right, I want to try this new voluntary job/making friends with the neighbours/trying this new activity”. I’m anxious, but I put it aside. This will be great. This will be so much fun and I know I can do it! I just have to push myself and be brave.
The wave is on a gentle rise.
I reach out, I offer my services, I offer my friendship and at first, everything is fine. I’ve found a new activity, a new social circle. This time it’ll be okay, I tell myself.
Meanwhile, my anxiety at being out of my comfort zone is rising. I control it. I won’t let it get the better of me. But I make social errors, and every time, my confidence drops - I miss a hint, I say something that makes a person frown, I mess up on a task I’ve been asked to do… My anxiety rises, like a great wave that seems to suck water from the beach.
When I’m on my own, there is a war in my head between worrying about what I’ve said, what the new people think of me, and whether or not I can actually do what I’ve offered to do. I fight to stop my mind going down that road: It’ll be fine, most people are nice, most people make allowances if you’re kind and sincere. I’ll be fine.
I start to doubt myself. I’m not as sure I can do this. What if it all blows up in my face? I’ll have failed people, or got in the way, or wound people up; and that is even worse, in my eyes, than being unpopular. The slightest frown or odd look from my new friends, and I’m struggling to stop my mind from going into a tailspin. What if they hate me? No, I remind myself, people rarely hate other people. Hate takes effort. They may be mildly annoyed at best.
The thing is, I can’t be sure. I don’t mean to be paranoid, but you have to understand your facial expressions, your body language, are so much Greek to me. I have no clues to judge, to see your reactions to what I’m saying or doing. You may praise me, but are you sincere? I often miss sarcasm. You could be a lovely person, or a bully. I have no way of distinguishing. And in the past, so many times, I have been disappointed by a friend I thought I had, who turns round and rejects me - presumably driven to it by my inability to take the hint. I try not to think about that. I try to push through the hurt and the fear and be brave, be calm, remind myself I’m OK.
The wave starts to peek, racing towards the shore, picking up debris as it travels.
I start to screw up. I fail to do something I’ve promised to do - I don’t know why. I just procrastinate, try to avoid thinking about it because its too stressful. I mistake intentions and misunderstand instructions. I turn up at your house in the middle of dinner and I phone you when you’re about to get in the bath. And in the attempt to not think about scary things, I forget a few important things as well. I forget that meeting, I forget to bring the paperwork, I forget to fill in that vital form.
You get angry with me. You may not shout or show it openly. That’s worse. I sense negativity, but I don’t know why. Are you angry, disappointed, sad? Have you a headache or am I a headache? Or is this just paranoia that I’m making up inside my head? What can I do to make it right? I have no idea. Thinking about it hurts.
I want a new friend, a new activity, but engaging with the world is confusing, frightening, out of control. I want to retreat. Go back to my quiet world, even if I’m bored and lonely. I want to be doing familiar things with familiar people. People I don’t have to work so hard to be with. People whose conversations I don’t have to analyse into the small hours, trying to cover over mistakes..
Then the wave breaks. I am awake until dawn, heart pounding, mind fixated on what I’ve said, what you said, what happened, what is real, what is just fear talking… I can’t remember your face, your expression. I try to guess what you’re thinking, but I cannot trust you if I ask.
People don’t say what they mean. I know that sounds bad if I say it. It sounds like I’m making you out to be a liar, but I’m not. I know you mean well. I know everyone means well. You don’t criticise people just because they screw up a bit. You don’t want to hurt. Neither do I. That’s the tragedy: neither of us saying what we mean because of fear, because everyone wants to be liked, to be admired, to be respected. And I don’t know what I’d have you do - either way, I’ll be hurt, I know, so its not as if telepathy would help, even though I fantasise it would.
The fundamental problem is, you are an unknown quantity, and for me, an unknown person is like the deep ocean. There may be treasure, down there, beneath the waves, but to get to it I have to hold my breath and dive and dive, but not too far that I cannot come back up. I am brave until I start to run out of air.
So the wave breaks, and everything is swept away. You lose your temper with me, I’m fired from my voluntary job. They tell me I “not a good ‘fit’ with the team”, I’m “maybe better suited to something else”, you “can’t deal with the drama in your life”. “It’s not you, its me”. I am both relieved and disappointed, hurt and frustrated, and castigating myself for one more letting the fear rule me. But at least now I can rest.
For a while things are peaceful, my anxiety retreats, but I know that before long I will try again, and again, and sometimes it’s worth it. Sometimes I reach that treasure in the bottom of the sea and sometimes the waves don’t get too big. And when I despair and swear to myself not to bother, not to face that mental pain, I look at my friends and I look at the things I’ve achieved and I think “It’s worth it”.
And besides, I have a bigger fear: the fear that I will stop fighting this wave and be swept away altogether.