Autistic History Month: the puzzle piece

This article has been rewritten thanks to the feedback in the comments by Quarries and Corridors and Kate Gladstone.

When I first heard about November being Autistic History Month, my mind went blank. I was still struggling to make sense of my personal history in the light of my autism diagnosis. I didn’t know anything about the history of autism in general. Or important historical figures. Or the history of the neurodiversity movement.

But as Unstrangemind posted so eloquently on her blog: “Our own people do not know their history.”

So when I came across some interesting tidbits and factoids in my utterly random browsing today, I wanted to share them with you. On this last day of Autistic History Month 2013. Because we need to know our own history.

The puzzle piece.

First impressions.

When I first came across the puzzle piece symbol a couple of years ago, before I even started thinking of myself as autistic, I thought it was fun. Because I like doing jigsaw puzzles. And it had LOTS OF COLOURS! I’m helpless when it comes to colours. But the puzzle ribbon used by the Autism Society didn’t have as many colours, so it wasn’t as much fun. And Autism Speaks puzzle piece was even worse because it was all monochrome and boring and all by itself.

Second thoughts.

I started thinking about what the puzzle piece was supposed to mean. And I started applying it to myself. Am I a puzzle to be solved, a mystery to other people? Am I that piece of the puzzle that just won’t fit in properly no matter how hard you try? That’s not how I want to think about myself. And I don’t want other people to think that if they’d just cut a little bit off my corners, I’d fit right in. You know, that last bit of sky that you KNOW can’t go anywhere else. But it won’t fit. And you don’t feel like taking out all the sky pieces and starting over. So you just hammer it in and declare the puzzle solved.

Bugger that. I’m not a puzzle.

So imagine my surprise when I discovered that neither Autism Speaks or the Autism Society invented the puzzle piece symbolism.

It’s far older than that.

In 1962, a small group of parents in the UK who were frustrated at the lack of understanding and help available for them and their children started a group that would in time become The National Autistic Society and, as far as I can tell, the first autistic organisation in the world.

They’re the ones who started using the puzzle piece. It was designed by Gerald Gasson, a parent member of the Executive Committee.

The minutes of the Executive Meeting of 14 February 1963 read: ‘The Committee decided that the symbol of the Society should be the puzzle as this did not look like any other commercial or charitable one as far as they could discover’.

From Perspectives on a puzzle piece

However, it wasn’t just a puzzle piece. It was a puzzle piece with a weeping child inside of it.

The puzzle piece is so effective because it tells us something about autism: our children are handicapped by a puzzling condition; this isolates them from normal human contact and therefore they do not ‘fit in’. The suggestion of a weeping child is a reminder that autistic people do indeed suffer from their handicap.

From a presentation by Helen Green Allison given in 1987

They actually changed their name from The Society for Autistic Children to The National Autistic Society in 1982, recognising that autism is a disorder that affects adults as well, something that several well-known organisations still struggle with today. But the puzzle piece with the weeping child remained in place until as late as 2002, around the same time they started making an effort to include autistic people on their board.

Their current logo symbolises inclusion and support, and a lot of what they do speaks of focusing on acquiring supports and services for autistic people and looking at the social model of disability instead of the recovery/cure rhetoric that a lot of other organisations still engage in. But it took a lot of pressure and criticism from autistic activists before they got to that spot, and it’s only been a relatively recent change.

I’m going to be a bit stubborn, though. Despite what Helen Allison wrote in 1987, the original meeting notes only mentioned the puzzle piece as being different. The notions of “not fitting in” or “solving the puzzle” were tacked on at a later stage.

Just different. As we are all different. No more. No less.

I think every person should decide for themselves whether they want to take back the puzzle symbolism, or refuse it because it’s been tainted by organisations that do not speak for us. We could let the puzzle piece divide the community, or we could accept that it’s still a recognisable symbol to many people, or we could try and find something that appeals to all of us. But in the end, it’s up to you.

But I do like knowing a little bit more about the history of the puzzle piece symbol and its origins.

Batteries and procrastination

Do you want to know what having executive function looks like?

Red bicycle light

It’s getting ready to go to the grocery store (on my bicycle, it’s a local store) and realising it’s dark out. It’s making the connection between “it’s dark out” and bicycle lights. It’s remembering that the last time I rode my bike, the batteries in the red light on the back were nearly dead. It’s walking back into the living room to get the spare batteries from the big fruit bowl, and putting them in the bicycle light. It’s putting the dead batteries in my coat pocket. It’s remembering the dead batteries are in my coat pocket as I enter the grocery store. It’s walking to the recycling bin and dropping the batteries in.

It’s not crisscrossing the grocery store trying to think of everything I need to buy, because I didn’t bother making a list. A little executive function fail there. But let’s go on.

It’s heading towards the checkout lane with a basket full of food, and stopping to pick up extra batteries. It’s putting the new batteries in the big fruit bowl when I get home. It’s throwing the old empty packaging in the bin.

It’s amazing.

All my life, I wondered why things that other people claimed were so simple, for me were so incredibly hard to do. I thought I was making a fuss over nothing. I thought I was being lazy. I thought I was procrastinating. But this little scenario? Can I honestly say that NOT doing all of this would have been procrastination? Laziness? Making a fuss over nothing?

Seriously. I can think of far more interesting things to procrastinate on. I can think of far more efficient ways to be gloriously lazy.

This little scenario. Most people probably wouldn’t understand why I’m even mentioning it. Because they don’t even think about it. It’s normal for them. It’s how they live their lives. But me? If you had told me a month ago that I’d be capable of doing this, I would have laughed at you. I had spent 37 years trying to learn how to do this, and I knew I’d failed. This was not something I was capable of.

And now I know why.

Executive function. And medication has fixed it.

White bicycle light

This is autism

Last Monday, Autism Speaks told the world that autism is:
. . . living in despair
. . . fear of the future
. . . exhausted, broken parents
. . . lost, helpless, burdensome children

That kind of autism is not my autism. My contribution to the This is Autism Flash Blog.

I enjoy the sounds of the city around me, the strains of birdsong that I can hear even through traffic, the purring of my cat that almost but not quite manages to drown out all other sounds, the clicking of my keyboard while I’m typing. I hear the trains going past in the distance and I love getting sucked into that rhythm. When I listen to music, I become the notes, the melody, I can pick out the individual instruments and still hear how they work together to create a single sound. I sing along with the counter melody almost by instinct.

I have problems when people raise their voices, start yelling, even from a street away. I have problems with loud cars and motorcycles and airplanes, those sounds hurt my ears so much. Locations with lots of echo send me into sensory overload. Loud bangs, or even just someone clapping suddenly, frighten the life out of me.

This is autism.

I’m able to make the most outrageous statements in a completely neutral tone of voice and with a neutral facial expression.

My friends call it deadpan.

This is autism.

I’m unable to reach the highest shelves in my kitchen or at the supermarket without assistance. That means I either have to buy specialist tools like stepladders with my own money, or ask others to get things down for me. There are no services available. Sometimes I want to cry with frustration when I can’t get something from the top shelf on my own.

This is being 5’3″.

Autumn makes me happy because the piles of fallen leaves make me want to play in them, throw them in the air, smell the mulchy scent of them, hear the whispery crispy sound of them as they’re crushed. Fallen leaves make me feel like a child.

Winter makes me happy because snow is beautiful and shimmery and light. It gives everything a new shape. It’s soft and crispy at the same time. Snowflakes have the most intricate patterns. And having a snowball fight is so much fun, even though the sensory overload from having a snowball land in your collar is indescribable. Snowball fights make me feel like a child.

Spring makes me happy because there is no colour more beautiful than the green of new leaves. I stare up at them and see the sunlight fall through them. And I feel the wonder of new life, of seeing everything for the first time, the wonder of a child.

Sometimes I am able to shake off the shackles of social expectations and act like a child. I wish I were able to do so more often. Not being aware of social rules has its benefits.

This is autism.

I have to deal with people who don’t think like me every day. One of the greatest gifts that autism has brought me is connecting with other autistic people. Sharing the same way of thinking doesn’t automatically mean that we get along, or that we’re all good people. But there is an instinctive level of understanding that has eluded me for so long. Something that is lacking in the majority of people I meet. They don’t understand. And sometimes it seems as if they don’t even want to understand. That they don’t want me to be me.

I’m tired of being told I’m smart enough to figure things out myself. I’m tired of being told to fit in, to stop being so contrary and different. I’m tired of trying harder. I’m tired of getting fired for not being sensitive to office politics, for speaking the truth at the wrong time, for not understanding that sometimes words are more important than actions. I’m tired of having people angry at me for shutting down, for not looking at them, for not responding quickly enough.

This is not autism.

It is not autism that makes people treat me like this. And it is not autism when I’m hurt by how people treat me.

Autistics Speaking Day 2013: Fear

I want to speak to you about fear.

I am autistic. And I am afraid.

Fear of not being seen as fully human when I lose my words. Fear of losing my words because I have so much to say. Fear of not being listened to.

Afraid of getting my experiences discounted, of being told that I can’t understand something because I’m autistic. Afraid of being told I have no empathy.

Fear of losing my job. Losing it again and again. Fear of losing my house. Fear of seeing my safety destroyed.

Afraid of big crowds. Bright lights. Afraid of loud noises. Afraid of tiny noises that are impossible to identify. Afraid of clothes that seem fine one moment and unbearably itchy the next.

Fear. Of you looking at me and seeing a loser. Fear of you telling me that I should stop feeling sorry for myself. That I should try harder. When I’ve been trying so hard all my damn life. Fear of becoming too tired to continue.

Afraid of getting judged for not being able to keep my house clean. Myself clean. Myself fed. Afraid of getting judged for not doing the things that normal people do.

Fear of being told I have no feelings.

Afraid that nobody will understand and I will end up alone. Forgotten. Discounted. Ignored.

Fear that people will only see my defects. Not my strengths.

I am speaking of fear.

And you?

You who tell me to look you in the eye. You who tell me to stop fidgeting. You who tell me I’m smart enough to figure it out. You who tell me to use my words when you mean your words, because that’s the only ones you’ll listen to. You who tell me I’m cold and distant because I don’t show my emotions in a way that you recognise. You who tell me lying is bad and then punish me for speaking the truth. You who tell me every person is unique and then tell me I’m too different.

Will you also tell me I have no right to feel afraid of you?