Middle aged woman learns communication

I am always learning. If I ever write an autobiography this will be the title.

I. Am. Always. Learning.

Even when I don´t want to learn, I learn. What else can I do, with eyes and ears endlessly registering everything around me?

But I also learn from experience. Oh, how I learn from experience. And oh, how hard and painful that can be. Some things I have to learn over and over again. But now I´m going to stop whining and do some good. Turn this into something useful.

Mirroring

Lately I´ve been absorbing everything I can about women on the autism spectrum. Naturally, being recently diagnosed on said spectrum myself. Fortunately, knowledge about this topic grows every day, as the female side of the spectrum is gradually receiving more attention.

One of the common threads that show up repeatedly is that women and girls on the spectrum mirror. We all learn through mirroring, everywhere a young learns from an older, whether we see it in a video of a kitten trying to wash like its mama, or in a child copying an older sibling.

Our brain is partly made up by mirror neurons, for example responsible for making us gag when other people throw up (sorry for the difficult reference, your mirror probably got triggered just by reading this).

Girls on the spectrum seem to depend on mirroring a lot, long into adulthood, especially in regards to social interaction. That mirroring isn´t always useful or helpful.

Listening by talking

Since people on the spectrum struggle with social interaction, especially the effortless flow of unspoken communication, we rely on all kinds of training wheels when learning to interact with others. Consciously or not. And then we ride on into life with those awkward contraptions poking out from our bikes well into adulthood. Even if they no longer offer any support and maybe even bump into other people. Even if we trip over them ourselves.

One of the things we seem to do, and can be very annoying to others, is trying to get other people to talk by speaking out ourselves. If I want to know something about you I will probably try to ask for it by dumping something on you about myself.

And then I wait for you to mirror

But there’s no guarantee that you will do that. Maybe you just want to get away from this talkative woman.

And if I really want to know what you have to say, I may just go on talking.

This is not very practical at all. And it’s also really embarrassing to realize that you’ve been carrying on like this your whole life. I´m so sorry, I meant well…

I have to push myself to even write this, I’ve been so ashamed of my constant talking and so often felt rejected because of it. But I am learning and have to get this off my chest in order to keep on going.

See there – I’m still dumping unsolicited information on you. But here you at least have the option to just stop reading 😉

To ask

I don’t know how often I’ve complained about never hearing about anything. Why doesn’t anyone tell me what’s going on?

A coworker is suddenly away for a whole semester, I only notice when he’s gone. People leave for travels I knew nothing about. Something important happens and I’m the last one to know. And so on and so forth. I don’t even hear rumors about myself.

I now know it’s because i don’t know how to ask. I’m not familiar with this aspect of small talk; asking others about their plans, what they dream of doing, what’s going on in their lives. I am interested and I do want to know, but I will have to learn how to ask for this information.

All too often I feel like the lovely Saga Norén, when she starts asking: “should we smalltalk or not?” And then starts off with something way too personal. “My period started today” “Are you two sleeping together?” I feel so stupid when I ask people about personal stuff.

But I am trying. Maybe I’ll start small, by reminding myself to ask the people around me how they’re doing. And focusing on listening instead of sharing.

Hopefully I’ll get there in the end.

But until then: how are you doing? Everything good?

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.

 

Asperger playlistinn

Þegar erfitt er að koma tilfinningum í orð er tónlist – með eða án texta – tilvalið tjáningarform. Fyrir mig eru söngtextar og ljóð mikilvægur og ómissandi hluti tilverunnar. Tónlist jarðtengir um leið og hún ljær huganum vængi til að svífa um alheiminn.

Escapes through the rhythm of words

Þannig hljómar ein af lýsingunum sem Samantha Craft notar í óformlegum lista sínum yfir einkenni kvenna með Asperger. Ég var svo hugfangin af þessari setningu þegar ég las hana fyrst (og er enn) að ég var að því komin að láta flúra hana á framhandlegginn á mér (og er reyndar enn). Þessi orð dáleiða mig, fanga svo vel hugleiðsluástandið sem taktföst orð kalla fram. Núvitund í sinni tærustu mynd.

Mixtape nörd

Sumir ,,segja það með blómum”, ég nota lag og texta. Hér á eftir koma nokkur lög sem hjálpa mér að koma orðum að því hvernig ég sé heiminn með Asperger-gleraugunum mínum. Röðin er tilviljanakennd, sum lögin hafa fylgt mér síðan ég man eftir, önnur styttra. Sum hef ég ekki enn fundið en bæti þá við ef svo ber undir.

Human behavior – Björk

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

Eigum við að ræða það eitthvað frekar? (Sagði hún og leit eitt augnablik upp úr útkrotaða landakortinu, sjálfshjálparbókinni, frasabókinni).

Þegar þú ert sífellt að leggja á minnið, flokka, bera saman og reyna að finna heila brú í því hvernig fólk hugsar og bregst við þá kemstu fyrr eða síðar að því að það er bara alls alls alls engin lógík í neinu. Engu. Einmitt þegar þú heldur að þú sért búin að kortleggja veröldina þá snýst hún allt í einu á hvolf og við blasir byrjunarreiturinn. Og enginn tvöþúsundkall fyrir að lenda þar aftur.

Engu að síður er samneyti við fólk heillandi ráðgáta sem þú átt erfitt með að halda þig frá. Þú gefst ekki upp, þú reynir aftur.

…Be ready be ready to get confused…

(p.s. Björk bregður meðal annars fyrir í geimbúningi og líknarbelg í vídeóinu með laginu. Skemmtileg tenging við I am a rock og Space oddity)

I am a rock – Simon and Garfunkel

…Ég sit ein við gluggann minn og horfi á snjóinn og myrkrið … Ég er klettur, ég er eyland. Umhverfis mig hef ég reist veggi, hátt og voldugt virki sem enginn kemst í gegnum. Ég þarf ekki vináttu, vinátta særir … Ég hef bækurnar mínar og ljóðin mér til varnar. Ég er örugg í herberginu mínu, líknarbelgnum mínum, ég snerti engann og enginn snertir mig. Ég er klettur. Ég er eyland…

Þetta lag er svona ca. menntaskólinn plús mínus einhver ár í hvorn enda. Ég skildi ekkert í heiminum eða til hvers hann ætlaðist af mér. Hvað ætli ég hafi dvalið mörg þúsund klukkutíma ein inni í herberginu mínu? Mannsævi? Oft fannst mér ég vera til hliðar við heiminn, man eftir að horfa á snjókorn bráðna í lófanum á mér, efst í tröppunum við MR, og hugsa; ég bræði snjó, þannig að ég hlýt að vera til.

Á þessum tíma vann ég markvisst í því að koma mér upp pókerfeisi. Láta sem ekkert væri, láta ekkert koma mér úr jafnvægi. Svipað og þegar maður er ein í stórborg og villist en vill ekki opinbera túristann í sjálfri sér með því að nema staðar og kíkja á kortið. Bara labba áfram, þykjast vita vel hvert ferðinni er heitið og vona að maður finni neðanjarðarlestastöð áður en fæturnir gangast upp að hnjám. Því ef þú sýnir á þér veikan blett áttu á hættu að lenda í árás. Klettur, eyland, allt under control hér…

Það vonda við þessa aðferð er að ef ekkert illt snertir mann, gerir ekkert gott það heldur. Ef þú finnur ekki sársauka, finnur þú þá gleði? Þarna liggur kannski kúnstin – í stað þess að loka á allt þarf að velja og hafna. Tengja eyjuna varfærnislega við meginlandið.

Don’t let me be misunderstood – Nina Simone

Snillingurinn hún Nina átti ekki sjö dagana sæla, greind með geðhvörf, gallharður aktívisti, ítrekað misskilin og í raun jaðarsett. Ofbeldisfull, þolandi ofbeldis. Á undan sinni samtíð á margan hátt en líka sárlega á skjön við lífið og tilveruna. Ég er nokkuð viss um að hún hefði tikkað í mörg Aspergerbox ef að því hefði verið gáð.

…Ég er bara velviljuð sál, góði Guð, ekki láta misskilja mig…

Nú er ég alveg ágætlega dugleg að koma fyrir mig orði, skýra út hluti og koma skilaboðum á framfæri. Enda hef ég æft mig endalaust, lært af óteljandi mistökum og safnað í verkfærakassann ýmsum hjálpartækum. Samt hef ég ekki tölu á misskilningunum í lífi mínu og verð held ég að sætta mig við að þeir munu fylgja mér alla tíð. Gallinn er sá að óþægilegasti misskilningurinn, versti og sársaukafyllsti, er einmitt sá sem kemur fram í mest krefjandi aðstæðunum. Þegar öll forritin í höfðinu eru á útopnu, öll skynfæri uppfull af áreiti og ég að vanda mig eftir allra fremsta megni. Gera mitt allra allra besta. Þá koma gloppurnar og þá er því miður oft mest í húfi. Þá sé ég ekki vegginn sem ég er að klessa á.

…I try so very very hard…

Honesty – Billy Joel

Þetta er lagið mitt, alla leið. Ást við fyrstu hlustun og alltaf númer eitt.

Gefðu mér frekar erfiðan sannleika en þægilega lygi. Ekki hafa áhyggjur þó svo ég hverfi inn á við af og til, ég bið ekki um neitt á meðan ég er í burtu. En hvert get ég leitað þegar mig vantar einlægni? Þá treysti ég á þig.

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

Billy hélt mér á lífi þegar ég var kletturinn og eylandið, ein í virkinu mínu. Leyfði mér að flýja inn í taktföst orð.

Ég bara get ekki fengið leið á þessu lagi. Vinsamlegast spilið það í jarðarförinni minni.

True colors – Cyndi Lauper

Allir litir regnbogans eru fallegir og sannir. Vertu sátt við litinn þinn, hann er ástæða þess að ég elska þig.

Ég tengi þetta lag einhvern veginn alltaf við haustið, sem í mínum huga er sannasta árstíðin. Náttúran sýnir öll sinn rétta lit. Laufin sem um sumarið hafa keppst við að skarta sama græna litnum, opinbera nú sitt innra eðli. Verða einstök, auðsæranleg og falleg. Kveðja okkur hvert á sinn einstaka hátt.

…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

Auðvitað, hvað annað? Og hver annar en David Bowie? Hann virtist nú aldrei alveg tilheyra þessum heimi og kvaddi undir merkjum svartrar stjörnu. Tímalaus, eilífur.

Geimurinn, geimverur, geimfarar – allt eru þetta þekkt Asperger þemu.

Einstaklingum á rófinu finnst oft að þeir skilji ekki mannkynið og hljóti því að vera frá annarri plánetu. Karlar frá Mars, konur frá Venus og fólk með Asperger frá Plútó. Við komum í friði 🙂

Geimurinn er líka algengt áhugamál (special interest) meðal fólks á rófinu. 10 ára sonur minn er staddur þarna einmitt núna, deilir óspart með mér fróðleik um allt frá Yuri Gagarin til gervihnatta. Þegar ég spyr hann hvaðan hann hefur þessa þekkingu brosir hann út í annað og segir: “well, it ain’t a book”. Lengi lifi internetið.

Major Tom er í eigin heimi, borðar prótínpillur og treystir því að geimskipið hans viti hvert það er að fara. Samskiptin við jörðina eru svona upp og ofan, ekki beint samtal heldur meira kannski gagnkvæmt eintal.

…Can you hear me major Tom?…

Stúlkan – Todmobile

Hversu fullkominn er þessi texti? Rammar þetta algjörlega inn. Kannski vitum við núna af hverju… leggðu við eyra!

Stúlkan kyssti á stein

og hún kyssti einn bíl

Stúlkan kyssti á rúðu

og svo kyssti hún jörðina

þar sem hún lá og taldi flugvélar

Veit ekki af hverju

ég veit ekki af hverju

Stúlkan faðmaði tré

og hún faðmaði hús

Stúlkan faðmaði bók

og hún faðmaði fötin sín

en hún faðmaði aldrei

aldrei fólkið sitt

Veit ekki af hverju

ég veit ekki af hverju

Meira – viltu fá að heyra meira

um stúlkuna og fleira

eitthvað skemmtilegt og skondið, viltu

Meira – viltu fá að heyra meira

leggðu þá við eyra

Eitthvað skemmtilegt og skondið, sagði ég

Stúlkan horfði út á haf

og hún horfði inn í blóm

Stúlkan horfði á bát

og hún horfði upp í himininn

en hún horfir aldrei

aldrei í augun þin

Veit ekki af hverju

ég veit ekki af hverju.

Meira síðar…