As some of you may know, I have begun academic research into the field of autism communication. With the kind permission of Robbie Stoakes, I hereby present his insightful account of what it is like to live with autism:
Before I start actually writing, I need to make a disclaimer; I’m not a psychologist. I’m not a neuroscientist. I’m not even all that smart. This is not the definitive guide to autism. I haven’t carved this into stone slabs to preach to the uneducated masses, if only because I’ve lost my chisel again. This is just the perspective of someone who has autism, and even that isn’t all that of a qualification; after all, becoming a parent doesn’t make you a paediatrician, despite One Million Mom’s delusional wishful thinking. But I was asked to write for this lecture, so here is…
An insider’s perspective to autism.
We’ll start with an exercise, but it’s only for those of you who write with your right hand. You will need a pen and something to write on; some paper, your arm, priceless historical documents, anything will do. I want you to write this next sentence with your left hand.
“The quick brown fox jumps over the lazy dog.”
As you may notice, it’s an annoying thing to have to do and your writing looks like a drunk spider dipped its leg in ink for a dare then staggered drunkenly about. This is completely natural; you’re right-hand dominant, so your brain likes to use your right hand. If someone unceremoniously hurled a tennis ball at your head, you’d instinctively catch it with your right, even if your left was closer, because your brain likes doing things with the right.
But there’s an odd twist to this. The more you write with your left hand, the better you get. While this is bloody obvious, it’s also easy to forget. You could have learned to write with your left hand from the moment you were born, and all likelihood would be that it wouldn’t take long to become good at it. In some cases, you could even become completely unrecognisable; everyone you know would assume that you’re left-handed. And then someone would once again unceremoniously hurled a tennis ball at your head, and you…
… would still catch it with your right hand. You’re right hand dominant, and nothing will change the wiring of your brain. You can fight it, you can cheat it, you can work around it, but you can’t change it. You can become proficient enough that you can write left handed better than you do with your right, but it takes a lot more concentration and discipline to do because you’re constantly fighting your natural impulses. Your brain still wants to write with your right hand.
This is pretty much what it’s like to have Autism and what was called Asperger’s Syndrome. It’s writing with your left hand, but for and with everything about your life. Talking to other people, learning new things, going to the shops, anything involving other people. Some people learn to cope and live very fulfilling lives. Some people have every day become an uphill struggle. Some people give no hint that they have autism to the point that they completely fool everyone around them and may not even know it themselves. Some people rely on care from others for all of their life. But all of them are natural right handers having to think as left handers in their heads. It’s an odd concept to wrap your head around, so I’ll give an example.
Let’s say Samantha and Jean are talking about the hottest boy in school, James. Now, Jean has Autism, but she manages really well in everyday life. Samantha doesn’t even know that Jean has it. The two are talking about James and how much of a generically handsome beefcake he is, when Samantha suddenly says;
“I saw him at the shops this morning.”
Most people are able to put it into context; they’re already talking about James, they know James is a man, so therefore the ‘him’ Samantha is referring to is probably James. And Jean also knows this; she knows about context and views things in context. But her brain?
“Him?! Him?! Who’s him?! Who are we talking about?!”
It’s a misnomer to say “Autistic people don’t understand context” because that isn’t true. Jean does know what context actually is. But her head isn’t actually wired to understand context; it’s left handed in the mind, and it would rather use the left hand. It doesn’t do context. Jean isn’t just clicking into it and tuning in like anyone else would, she has to fight her own mind into stepping in line. Some people manage to do this. Some people don’t.
Because no matter how good at writing with your left hand you become, you’ll still try to catch the ball with your right.
So the question is what you can do to help, and the solution is a fairly obvious but not easy step to do; know who you’re dealing with. Everyone gets around autism in different ways and to varying degrees of success, and the only way you can help them is know who you’re helping. The unspoken bear trap with dealing with disabilities in general, autism in particular, is that there’s such a huge range of degree to which people can be affected, it becomes easy to get it wrong. Patronising people who really don’t need that much help and crushing their independence, while passing over and ignoring others who are begging for assistance that they sorely need. This is especially true of adults who end up in the middle range; too disabled to go it completely alone, not noticeable enough to qualify for further support. Many of them are supported through their childhood and their teens, but then they hit adulthood and if they aren’t Rain Man then they can expect to be dropped like a bad habit.
Ultimately, you can’t forget that you’re taking care of a human being. How many times have you heard people say this chestnut; “Oh, I know someone with autism, they’re all so nice.” If anyone says that, it is your duty to discourage them from ever saying that again (I’m not saying punching them is the correct method, audience, I’m just saying that it’s the reliable method) and tell them that they’re part of the problem. People with autism are not all so nice. Some of the disabled people I’ve met are nice; some of the nicest people I’ve had the pleasure of meeting have learning disabilities. I’ve also met some absolutely loathsome individuals, with foul mouths and fouler attitudes. Either rude, or manipulative, or just plain stupid. Because people across the board are rude and manipulative and just plain stupid. Because people with autism are just people writing with their left hand when they’re wired to use the right. Otherwise, there’s no difference between you and them.
All of us have hurdles we have to jump, every single one of us; some of us come from poorer backgrounds, some of us have inferiority complexes and overbearing mothers and bad experiences with relationships and a lack of good education. Some of these hurdles you can jump over by yourself, but for others you need that leg-up from someone who can help. For people with autism it’s as if all those hurdles have an extra inch put on the top; some people barely notice the difference and fly through life as if they didn’t have it at all, some people struggle but manage to find a coping mechanism and get that extra inch in their stride, some people fall and find their lives destroyed by it. But if you want to give that leg-up to those who need it, make sure you know how high they’re jumping. Because if you give a step ladder to someone who’s done fine without it, and cheer encouragement for someone who’s tripped over every hurdle up to that point, then you’re not helping either of them.
Copyright. R Stoakes October 2013