Why would I pretend to be autistic?

One of the common threads that run through the stories of women on the autism spectrum – many of whom receive their diagnosis late in life, often following a long and hard struggle to fit in – is that they are not believed, their diagnosis not accepted.

In many places it´s also difficult for women to receive a diagnosis due to prejudice among professionals, mainly owing to the strong male bias dominating the field of autistic studies ever since its first description.

Luckily, I have not experienced this firsthand. I´ve generally been met with good support and a positive attitude, not to mention the positive response this blog has received, as well as my willingness to tell my story in public. For that I am very grateful.

Sometimes I´ve even wondered if the disclosure of my diagnosis may have been a bit like when George Michael came out as gay – like, yeah, well, everyone knew that…

But anyhow, what people say to you isn´t always the same as what they say about you. As I have written about before, rumors and gossip incredibly often pass right by me, maybe as the result of avoiding small-talk. Which most of the time is just fine.

Am I maybe pretending to be autistic?

Apparently there are people out there who think I am.

After chewing on that fact for some time, I´ve decided that I am absolutely fine with that. As they say: what other people think about you is none of your business.

A woman´s journey towards an autism diagnosis is rarely short or straight. Which is precisely why I speak openly about mine. My preamble, my result and hopefully – sometime – my solution. Autism is not an obvious answer, there are very few who have the knowledge and even fewer who guide you in the right direction.

The journey to my diagnosis can be divided into a few sections. Going backwards from now, the shortest and most recent leg of the journey is the one starting with the first suspicion of being on the autism spectrum and ending with seeking, and receiving, a professional diagnosis.

Before that there was a longer period of awareness of the spectrum, learning from a parent´s perspective and doing my best to be a well-informed and supporting mom.

Before that there was a lifetime of different chapters, success mixed with distress, optimism and anxiety. All kinds of everything.

Individual

Adult diagnosis of autism is in my mind a very personal journey, initiated by each individual and on their own terms. A way to get to know yourself, learning how to deal with yourself, as well as other people. If and how we disclose our diagnoses will then decide if they also become a tool for other people to learn to interact with us.

I chose to speak openly about my diagnosis right from the start, which has a lot to do with my personal character, but also with my position in life at the time.

People often ask me what they should do in case they suspect that someone might be on the autism spectrum. Should they encourage them to seek a diagnosis? Point out this possibility? I’m not sure if there´s a simple answer to that question, a one-size-fits-all, as I´ve known of both good and bad experiences with pushing someone (an adult) to pursue an autism diagnosis.

My way of making people aware of the possibility of autism is to provide information. To tell stories and openly share my experience in the hope of opening some eyes. Not to try to correct people, fix them in any way or prove a point, but rather to widen the horizon and try to create more understanding. The strongest and most honest way to do that is in my opinion to use my own story. My point of view is only one in a million, but I am the owner of my own story and therefore have the right to share it.

On your own terms

My thoughts on whether to feel anything about other people´s opinions (if indeed they have any) can be summed up like this: An autism diagnosis is each individual´s matter, personal and privately owned. This is my diagnosis, it took me a long time to find it and I hold it very dear.

For me it was a puzzle that was missing, a screw that was loose. I can choose whether to talk about it or not, and would probably do much less of that if it didn´t form part of a bigger picture. The big picture of women and girls on the autism spectrum not being heard, lacking a voice.

In time I hope these lines that I am singing, in my own voice, will form part of a much bigger choir, in a tune much better known.

Asperger playlist

When the words to describe your feelings are hard to find, music – with or without lyrics – is a valuable form of expression. Lyrics and poems are for me an essential part of being. Music both grounds me and gives wings to my mind, all at the same time.

Escapes through the rhythm of words

This is one of the descriptions from Samantha Craft´s non-official checklist for Asperger in females. I was so fascinated when I first read these words (and still am) that I almost had them tattooed on my forearm (still might). Hypnotised by their perfect capture of the meditative state brought on by words and rhythm. Mindfulness at its best.

Mixtape nerd

Some people “say it with flowers”. I go with music and lyrics. Below is a list of songs that help me describe the world as I see it through my Asperger’s glasses. In no particular order, some of the songs have been with me as long as I can remember, others came later. Some I still haven´t found, but may add them to the list if and when I do.

Human behavior – Björk

…There’s definitely definitely definitely no logic … and there is no map and a compass would’t help at all…

Do we need to discuss that any further? (She said, looking up from her scribbled map, self-help book, phrasebook).

When you are constantly memorising, sorting, comparing and trying to make sense of the way people think and react, you find out sooner or later that there´s definitely definitely definitely no logic in anything. At all. Just when you think you´ve mapped out the world correctly it suddenly turns upside down and you´re back at square one. With no 200$ for landing on GO.

Nevertheless, interacting with people is an intriguing puzzle you can hardly stay away from. S you don´t give up, but try again.

…Be ready be ready to get confused…

(p.s. In the official video Björk appears, among other things, in a space suit and inside a womb. Themes that also appear in I am a rock and Space oddity).

I am a rock – Simon and Garfunkel

… I am alone. Gazing from my window to the streets below on a freshly fallen silent shroud of snow … I am a rock, I am an island. I’ve built walls, a fortress deep and mighty that none may penetrate. I have no need of friendship, friendship causes pain … I have my books and my poetry to protect me … Hiding in my room, safe within my womb. I touch no one and no one touches me. I am a rock, I am an island …

This song is high school more or less, give or take a few years at each end. I had absolutely no understanding of the world or what it wanted of me. How many thousand hours did I spend alone in my room? A lifetime? Most of the time I felt like I was looking at the world from the outside in. I remember looking at a snowflake melting in my palm, at the top of the stairs outside my school, thinking; I melt snow, so I must exist.

This is the time when I did my best to perfect a bulletproof pokerface. To always act as if nothing, never let anything upset me. A bit like being lost in a big city not wanting to give away your foreignness by stopping to check the map. You just walk on, pretend you know where you´re going and hope to find a subway station before you´ve worn your feet to the knees. Because if you show any weakness you risk getting attacked. Just be a rock, an island, nothing to see, everything under control here…

The negative side of this kind of being is that if nothing bad can touch you, nothing good can either. If you feel no pain, can you feel joy? Maybe that´s the trick – instead of shutting everything out you have to pick and choose. Build a bridge to the mainland, slowly, carefully.

Don’t let me be misunderstood – Nina Simone

Genius Nina didn´t have it easy. Diagnosed bipolar, a rock-hard activist, repeatedly misunderstood and in fact marginalised. Violent, victim of violence. Ahead of her time in so many ways but also out of sync with the life around her. I´m pretty sure she would have ticked more than a few Asperger´s boxes herself.

… I´m just a soul whose intentions are good, oh Lord please don´t let me be misunderstood …

I am actually quite articulate, good at explaining things and getting messages across. I´ve practised endlessly, learned from more mistakes than I can count and picked up more than a few useful tricks for my toolbox. Nevertheless the misunderstandings in my life are innumerable and I will probably just have to accept them as a constant companion as long as I´ll live. Sadly, the most distressing and painful misunderstandings always seem to occur in the most challenging situations. When all the programs in my head are running on full speed, all my senses are overstimulated and I´m trying to do be extra careful, doing my very very best. When the stakes are at their highest, the gaps begin to show and I loose sight of the wall I´m about to crash into.

…I try so very very hard…

Honesty – Billy Joel

This is my song, all the way. Love at first listening and always number one. An Asperger anthem if there ever was one.

I´d rather you told me the hard truth then a comfortable lie.

… When I’m deep inside of me, don’t be too concerned. I won’t ask for nothing while I’m gone. But when I want sincerity tell me where else can I turn? ‘Cause you’re the one I depend upon …

…Honesty is such a lonely word, everyone is so untrue. Honesty is hardly ever heard, and mostly what I need from you…

Billy kept me alive when I was the rock and the island, all alone in my fortress. He allowed me to escape in the rhytm of words.

I just can´t get tired of this song. Please play it at my funeral.

True colors – Cyndi Lauper

All the colors of the rainbow are beautiful, and true. Accept your color, that´s why I love you.

Somehow this song always reminds me of autumn, the truest of all seasons. When nature shows us all its true colors. When the leaves, that have all been covered in green, finally show their inner nature. Become special, vulnerable and beautiful and say goodbye to us each one unique.

…You with the sad eyes, don’t be discouraged. Oh I realize it’s hard to take courage in a world full of people. You can lose sight of it all, and the darkness inside you can make you feel so small…

Space oddity – David Bowie

But of course, what else? And who better than David Bowie? He never really seemed to belong to this world and said goodbye under the sign of a black star. Timeless, eternal.

Space, aliens, astronauts – all well known Asperger´s themes.

Individuals on the spectrum often feel that they don´t understand humans and therefore must come from a different planet. Men are from Mars, women from Venus and Aspergians from Pluto. We come in peace 🙂

Space is also a common special interest among people on the spectrum. My 10 year old son is at that stage right now, generously sharing all kinds of knowledge, from Yuri Gagarin to satellites, with me. When I ask him where he gets all this information, he smiles mischievously saying: “well, it ain´t a book”. Long live the internet.

Major Tom is floating in his own world, eating protein pills, trusting that his spaceship knows the way. His communication with Earth is a bit complicated, maybe more of a two-way monologue than a conversation.

…Can you hear me major Tom?…

Stúlkan/The girl – Todmobile

How perfect are these lyrics? Capture it completely. Maybe we now know why … lend me an ear!

The girl kissed a stone
And she kissed a car
The girl kissed a window
and she kissed the ground
where she lay counting airplanes
Don´t know why
I don´t know why
The girl hugged a tree
and she hugged a house
The girl hugged a book 
and she hugged her clothes
But she never 
never hugged her people
Don´t know why
I don´t know why
More - would you like to hear some more
about the girl and other things
something funny and amusing, would you?
More - would you like to hear some more
then lend me an ear
something funny and amusing I said
The girl looked out at the ocean
and she looked into a flower
The girl looked at a boat
and she looked at the sky
but she never
never looks you in the eye
Don´t know why
I don´t know why

More later…

A traveler on Earth

The photo shows a girl looking through a camera. The surroundings look desolated. If it weren’t for the gravel road, fence and electricity lines you could think that the girl was all alone in the world. That she had fallen from the sky, alone with the camera and her own shadow. A traveler on Earth.

Glimpses of clear sky are visible inbetween light and dark clouds. The weather seems tranquil, not too warm but not particularly cold either judging by the girl’s clothes. A thick sweater tucked into a pair of jeans. She seems rather careless about her appearance, there’s a stain on the front of her sweater from and she’s pulled back her hair back into an unruly ponytail. Her nails are bitten to the quick and if wasn’t for the camera you would see a squinted expression. She finds it difficult to look into the light. Her hands hold the camera in a careful grasp, as the shutter button is stiff and her fingers weak. The effort from taking a picture sometimes pushes them off center. There is tension in the girls’ body. She is making an effort, doing her best.

Pictures

It’s good to take pictures. The world is often so strange and hard to understand, she struggles to ‘get’ people and what’s going on. Pictures help.

She doesn’t always need a film to freeze the moment though, as her eyes notice everything and her brain registers every detail. Sometimes surroundings and situations – lines in the pavement, cars’ registrations numbers, the length of steps, knots in a wooden panel that look like eyes. She’s a finder, with a keen eye for patterns she quickly spots anything that stands out.

Sometimes her brain registers actions, her own or others’. Especially when she is upset. When she’s done something she shouldn’t or said something wrong. Strangely, the wrong things she says are usually something correct that she’s not supposed to say. Why not? Isn’t she supposed to tell the truth? Mysteries of this sort seem endless. There’s no way of predicting them, maybe it would be best to say nothing at all. If only that were possible.

Words

Some pictures are words, a text that describes a moment or event. Words form stories. It’s fun to play with words, because words tell the truth. Words on paper are what they pretend to be. That doesn’t seem to apply to spoken words, people often say one thing but mean another. She finds that very hard to understand.

They say she began to talk when she was one year old and hasn’t been quiet since. That’s probably true, as the struggle to stem the flow of words is one of her biggest challenges. To try to keep quiet and not speak all the time, about everything, to everybody, interrupting anyone and everyone.

There’s just such a short distance from her thoughts to her mouth. And her mind is in fast forward. She notices everything, compares, classifies and interprets, in attempts to find logic. Make herself understood. Understand others. There is an endless talk show going on in her head and sometimes she just forgets to turn off the sound. She notices when people stop listening, sees their gaze turn away and is always a little bit hurt although she really can’t stop. She has so much to say.

She also remembers a lot of words that she doesn’t understand. Words in a foreign language for example. Long and complex words that will wait in her brain until she finds their meaning, often by chance, often years later. When that happens, a picture gets attached to the word and both find their correct place in her catalog.

Asperger

The word ‘Asperger’ isn’t particularly long but it’s meanings are multiple. In fact the word is a name, a surname, as well as being used as a term to describe a syndrome on the autism spectrum.

Asperger didn’t exist in the catalog inside the girls’ brain. She would have known, as the layered significance of the word would have made it complex and as such, unforgettable. A word with a clear meaning, yet variable according to its use as well as depending on the individuals it’s used to describe.

The man Hans Asperger didn’t “have Asperger’s”. He was just one of the first people to link together various attributes of a certain group of people who had difficulties with social interaction while at the same time being rather intelligent.

Aspeger was in fact quite clever himself, but in a different way. He didn’t necessarily memorize the registration plates of all the cars in his neighborhood or store long foreign words in his brain to find their meaning later. And Asperger didn’t necessarily notice the girls, like this one, who were almost the same as everyone else, just not quite. Who learned some things at super-speed while struggling hard with others. Who hid their troubles carefully and pretended that nothing was wrong. Like this girl who did her best to fit in, with the aid of pictures and words and a brain that never stopped looking and categorizing and searching for patterns. Whose head was so full of words that they kept falling out of her mouth.

It took a long time for her to see that the word Asperger didn’t just apply to nerdy boys obsessed with computer games who don’t like the potatoes touching the meat. That it also applies to girls who hold on tight to their cameras like travelers fallen to the Earth and feel as though they’re just learning to speak like the natives. Act like the others. Appear normal.

Half a lifetime

Hans Asperger was around forty when he described the syndrome that bears his name. I was well past forty when I knew for certain that the lens through which I see the world was Asperger’s syndrome

I know a lot about Asperger’s syndrome, as well as many other things, but I definitely still have some revising to do on my ‘users manual’ and need to reevaluate quite a lot in my heart and mind. This blog will be part of that process.

I feel a bit awkward about not having found this out sooner. That I didn’t see how off center my camera often was. How different my point of view was often from that of other people. Systematically and unalterably. Firmly.

Yet I still think that the girl in the picture has done incredibly, incredibly, incredibly well. And I would like to reach back in time to hug the little traveler, pat her on the back and say: It’s going to be alright.