“what it’s actually like to be autistic”

Firstly, Happy New Year to all pagans who celebrate Samhain, belated Happy Diwali to Hindus, Happy All Saint’s Day to anyone who celebrates that and Happy slightly-late Halloween to anyone who did that last night. And, of course, Happy Autistics Speaking Day to everyone.

 

Except many people won’t have heard of that last one. Today (1st November) is a day the Autistic community mark by speaking up, by writing, blogging, giving speeches or just talking to our friends about what it’s actually like to be autistic and about the challenges we face because of the unusual way our brains work and the joy that we find in our lives and even what we do all day. We do this because there are a lot of people and organisations out there who would happily talk for us and often talk over us. They make their voices very loud and put a lot of time and effort and money into getting people to believe what they want people to believe about autism – that autism is a “tragedy”, something that children and families “suffer from”, that autism is a fate worse than cancer or AIDS and that autism can be and should be cured.

 

A lot of autistic people, people like me, don’t agree. We don’t see the way we are as a 100% bad thing by definition. We don’t think it’s autism itself that causes us and our families to “suffer” – some of us don’t think autism necessitates suffering at all. We can see that cancer and AIDS are illness – and that autism isn’t. And we think autism can’t be cured and that it doesn’t need to be.

 

People often ask me “What is it like to be autistic?” This is quite a confusing question as it is very open and does not get to the point of what the person is trying to ask. Too often I find that what they really mean is the rhetorical question “Isn’t it really awful for you that you’re autistic and really great for me that I’m not?” but for the people who are actually curious I have a few answers.

 

          If I’m not feeling Socratic enough to ask “What’s it like being neurotypical?” my answer will go something like this: Imagine you’re at a party in a really crowded club. The music is really loud and everyone’s shouting to be heard over it. Lights flash on and off and they’re really bright. Now imagine a fire alarm goes off and everyone has to leave and quickly. But you discover the hard way that whenever anyone touches you a small electric shock goes through you. The lights are still flashing and no one’s turned off the music and all the people are crushing together around you meaning your skin feels like it might burn. People are shouting the directions to get out of the club but even if you can hear them they are talking far too fast for you to understand and you’re not sure they’re even speaking your language… Does that sound like a very unpleasant situation?

 

Well, being autistic isn’t like that all the time but it can get like that – except the loud music and fire alarm might be just children playing or the sound of rain against the window, the bright lights just fluorescent lighting or too much eye contact, the electric shocks might be caused by a gentle touch and the too-fast-different-language talking might be someone talking at a speed most people understand. My personal experience of being autistic is that some sensory experiences hurt, some of them always do, others only sometimes. And it adds up, the lights on the own might be okay but a loud noise might mean I need to leave the room.

 

          My experience of autism is of being very highly sensitive (on all of my senses) but not consistently. Sometimes I have no sense of smell, sometimes I find it hard to be in a room that had a person wearing perfume in it earlier. When I’m getting over-stimulated from the amplified sensory input I’m getting, I often wave my arms or twist my fingers together. Sometimes I bite my hands or hit or rub tables and walls with my hands and arms. I might make noises or say some words I like to say. Occasionally, I stamp my feet or hit my head on things. If I can leave the situation, I will.

 

          But I can’t ask to leave or explain what’s wrong or why I’m behaving strangely because the more overstimulated I am, the less able I am to speak at all, never mind speak clearly enough for most people to understand me.

 

          People will occasionally stop me here and clarify that they wanted to know about what it’s like to not have social skills. At which point I ask them whether they think it would be easy to learn how to socialise with people if they were trying to keep from getting overstimulated and were often told to stop doing any of the things they could do to keep calm. (I can understand not hitting things or biting myself in public, I can’t understand what people have against arm waving, feeling walls and finger-wringing). It isn’t easy to socialise with people with all this going on in the background, especially when people can’t respond nicely to me asking “Can you speak a little slower?” or “Can you make your question more precise?” and other people point and laugh if I wave my arms a bit.

 

          I find speaking difficult too as my brain goes much much faster than I can speak so if I don’t carefully say each word of what I want to say, I’ll say several different sentences at once and no one will understand any of them. I have a collection of words and phrases that I find easy to say and I say those often – it’s a short cut to make things easier.

 

          Because it’s not easy being autistic. But I don’t ever ever want to be “cured” and a lot of other autistic people feel the same way.

 

          Why wouldn’t I want to be “cured”? I just said that being autistic isn’t easy, don’t I want my life to be easier? Well, yes, I do want my life to be easier but I’m sure we all know that life isn’t easy. And “curing autism” and “making autistic people’s lives easier” are far from the same thing.

 

          One reason that the “cure” notion is problematic is that many of us find advantages to being autistic. For example, my autistic brain comes fitted with a brilliant memory, intense focus and unquenchable ability to learn. I’ve always had very strong interests and developed very good research skills to find out more about my favourite subjects and now I can use those skills to learn a vast amount about any topic in a short time. The way I think and speak is always very precise and direct which is very good for academic writing in Philosophy and probably in other subjects too. Though my directness can be misinterpreted as rudeness, many of my friends say they appreciate it and feel that socialising would be simpler if more people were as direct as I am. You did just read that, many of my friends feel socialisation would be easier if more people were autistic enough to say “I would like to be your friend. I would like to spend time with you and talk to you and hug you occasionally. Is that okay with you?” and expect a clear answer.

 

          Of course, a huge problem with the cure rhetoric is that it posits autism as an illness and in our society illness is seen as A Bad Thing That Is Always Bad. Autism isn’t an illness, it’s a lifelong neurological difference (or something very much like that, science may yet change its mind about what it is). Our brains work differently to how the brains of people who aren’t autistic work. We’re better than them at some things and not so good at others and all of us, autistic or not, are just trying to get along with our lives using our brains the way they work. It’s just that the world is a nicer place to be neurotypical than it is to be in a neuro- minority – the human world being seemingly built for people who rarely get sensory overload and can speak and say what they’re trying to say whenever they want to and who pick up easily on unstated social rules without having to study them and don’t need to concentrate very hard to follow them. It’s only ended up like that because there are more people who aren’t autistic than are and they forgot about us when they were making society and cities and religions and stuff. If we were in the majority, we’d probably forget them too. But having been forgotten and subsequently not fitting in is not the same as being ill. Autism itself isn’t painful (though over-stimulating situations are) and autism itself cannot kill you (though ill-advised “treatments” can, frustrated so-called carers can and depression caused by being constantly told you’re not good enough can). Autism isn’t contagious and it isn’t caused by a virus, bacteria or pathogen. Autism can’t be cured because the autistic aren’t “ill”; we just think a little differently and perceive things a bit differently.

 

          What I think is the biggest problem with the idea of a “cure” for autism though is what neurotypical people have historically and presently conceived of as a “cure”. Therapies, treatments, special diets, drugs and other “cures” have almost universally been measured by their ability or inability to make an autistic person “indistinguishable” from people who are not autistic. There are many problems with this. Most important perhaps is that, due to our differing ways of perceiving and thinking, what is healthy behaviour for a not autistic person can in fact be quite harmful behaviour for an autistic person. For example, if making my behaviour “indistinguishable” from my peers means staying in situations where I’m overstimulated without doing anything to calm myself down, it means withstanding increasing amounts of pain for the sake of other people. This leads to the second problem, a lot of the autistic adults I know have difficulty putting their own needs above other peoples (and yet strangely we are stereotyped as selfish) because they have learnt over the years that not-upsetting-people is so important that we must sit through pain for it, that other people’s desire not to be distracted is more important than our need to fidget, that other people’s disgust is more important than our spinning, flapping and chewing and other people’s need to ask pointlessly “How are you?” when they don’t even want to know the answer is more important than anything I want to say about stamps or trains or the fact that intersex people, conjoined twins, disabled people and people with dwarfism used to appear in Bestiaries. We learn, either explicitly or implicity, that how we are is wrong, is less, that how we think and feel and move naturally is Bad and Wrong and we are Broken. When all we are is different.

 

When “curing” autism means something different from “making autistic people look like everyone else no matter the cost” I might rethink my position on a cure. But for now I am autistic and I flap my arms and chew things and put my hands on my ears when things get loud. I repeat things I’ve said, I fidget and can’t sit still unless I’m deeply engrossed in what I’m doing, I don’t always understand what’s said to me and I don’t always say quite what I meant to. I can’t always talk and am learning sign language just to be able to keep communicating with my girlfriend when I can’t talk. I know lots about lots of things (though not so much about stamps actually) and I get on with my life. I’m autistic, I’m happy and I don’t want a cure.

 

If you want to know more about autism have a look at this website: http://autisticsspeakingday.blogspot.com/2011/11/problematic-notion-of-cure.html

 


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