tirsdag den 27. maj 2014

Thoughts and Musings on Thoughts and Musings

Below: A series of snippets that I either haven't been able or just haven't bothered to turn into full-length entries. Some may grow at a later time. For now, I think they make a nice collection here.

ONE

I don’t talk to myself; I just talk while there’s nobody else around.
I feel it’s an important distinction to make. Not that one is better than the other, mind; I have no doubt that there is much to be gained from having conversations with yourself, and I’ve tried my hand at it several times. I’m just not very good at it. I keep wanting to interrupt myself, and I tend to get very disheartened when somebody interrupts me. Then I have to apologize and assure myself that I really do respect my opinions and no, I wasn’t trying to be rude, and I have to try and regain the flow I had in my arguments, but the mood isn’t quite the same, I’ve lost track somewhere, and – yeah, it’s not fun for anyone. But just talking when no one is around to listen – that’s different. Somehow, much easier.

TWO

I sometimes feel unable to keep up with my own thoughts. An idea will take form in my head, but before I’ve ”finished it”, before I’ve properly comprehended it, I’ve already thought of an answer, a counter argument, a continuation. And then the same thing happens to that thought, and the one after, and so it continues ad infinitum.

But quite frankly, it doesn’t make sense. Once I’m aware of a thought, how is it then logically possible for me to feel that I haven’t finished thinking it? I know I can think faster than certain other people, but how is it possible for me to overtake myself?

THREE

Whenever I see a large gathering of people, it’s impossible for me not to think of them as animals. The resemblance, or maybe contrast, between the scene before me and those of the nature documentaries I spent my childhood watching is too great. I’m not intending to sound like a cynical, nihilistic stereotype when I say so; I feel no disdain or disgust or anything like it upon making this observation, no feeling of superiority (or inferiority for that matter) crosses my mind. At most I feel fascinated, and, in fact, a deep sense of peace and calm. There’s something weirdly harmonious about a group of human beings participating in the same activity, whether it be a bunch of music fans dancing at a concert, a room of quiet students taking an exam, or a group of commuters waiting for the bus. It’s the knowledge that at any time, one could decide to break away from the flow and do something else, but doesn’t. Or how no one in the flock is thinking about how they’re all doing the same thing, no one is thinking about the act itself, but rather they’re all immersed in doing it. They’re just living their lives normally, because that’s what it is – their lives. Our lives.

But once I stop to consider what’s happening, it’s a though I get detached from the whole experience. I’m overwhelmed by a feeling of being inhuman as soon as I’m aware of this particular part of human condition. I want to draw a loose analogy to quantum physics, where the act of observation changes the situation itself. Humanity is a sub-atomic particle: intangible and unstable.

FOUR

“The limits of my language mean the limits of my world.”

Wittgenstein said that, if I’m not mistaken. (I know quoting philosophers is sort of pretentious, but he’s my favourite). I agree entirely, and more often than not, the shortcomings of my own vocabulary frustrate me to no end. I lack terms for so many things, mostly things I feel and think. Throughout my life, I have said the words “My stomach hurts” countless of times, but my stomach never just hurts; there are different types of pain, different positions they occupy, some are snakes biting at my insides while others feel more like nausea – and lumping them all under the term “stomach ache” is frankly ridiculous. But that’s the word I have, and its limitations affect my mind as well. I feel a thousand different things that are supposedly all the same, and as a result I live in a world where many things are confusing and overwhelming, too big and unmanageable.

FIVE

I sometimes feel bad about my need to categorize and label myself, the desire for something more specific than “person”. But then I remember that the many cases and genders and inflections and grammatical engineering of the German language are what make its sentences so mechanically beautiful and strong, and then I feel better.

SIX

I took a class on Buddhism and Psychology, and my professor talked about his personal meditation, stating that he had an experience of not-self in the sense that when a sensory input such as bird song entered his body, it didn't feel different from any input that might have arisen in his body, such as a tingle in his foot or a thought in his mind. And so he felt that there was not much of a boundary between him and the rest of the world.


I realized that this is a surprisingly accurate description of how I feel most of the time. Being on the autism spectrum makes me very sensitive to sensory inputs, and I think the above is part of what causes my regular sensory overloads. Someone once asked me to describe that kind of overload, and how I experience sensory inputs in general, and I told them that "it feels like everything I hear and see and smell is inside my head, and not somewhere outside."

torsdag den 22. maj 2014

Disordered Eating on the Autism Spectrum - A Personal Story

Over the course of the last six months I have discovered two things about myself: That I have autism spectrum profile, and that I have an eating disorder. The ASP part is something I’ve been considering and suspecting for many years, while the eating disorder was a punch to the gut out of nowhere. However, they both have in common the fact that I’m now looking back at so many things that have happened or that I’ve done and thinking, “How on Earth did no one figure it out sooner?” The answer seems to be a lack of information, or rather, a lack of information conveyed in an appropriate way.

Several studies show that there’s correlation between having an autism spectrum profile and having an eating disorder (at least in the case of girls, but I see no definitive reason that it should be different for boys or nonbinary people). The results were found through measurements of the empathy quotients (EQ) and systematizing quotients (SQ) of a sample group of girls, where indeed many of the girls suffering from eating disorders ended up with test results that were similar to those matching an ASP.

The results of the studies make sense to me, but something vitally important is not present in the conclusions. Namely what eating disorders and the autism spectrum have to do with each other – what happened with these people? Is it causation or correlation? I was in a similar situation when I discovered the facts that I had both the one and the other. I couldn’t realize and accept being autistic until I moved beyond the otherwise excellent medical literature describing “symptoms”, “problems”, and “educational tools”  and started reading stories by autistic people who, from their own point of view, talked about their lives – their whole, normal lives. I didn’t discover my eating disorder, either, until I realized that getting one of those could be due to something entirely different than low self-esteem and a desire to be beautiful. In other words, I feel a lack of personal stories that can explain what’s going on inside a person’s head – their mind – rather than external symptoms and neurological reasons.

Hence this entry – I want to make my own contribution. Here’s my story.

If someone had asked me a year ago what mental issue I’d be most likely to be dealing with, “an eating disorder” would have been my last guess. Everything I knew about eating disorders were infinitely removed from my own self-image: My self-esteem and self-worth were fine (occasionally I’d even be called arrogant), I didn’t worry much about what other people thought of me, and even though I was somewhat chubby, I had no particular interest in or motivation to lose weight. Like in the cases of most other people with eating disorders, it started out benign. I had a general desire to become healthier, and so I started eating differently and exercise more – the weight loss that followed was merely a bonus. Even when I got to the point where I was exercising at least an hour a day, every day, there were no alarm bells going off in my head when I got on the scale and felt a strange satisfaction from seeing the number being slightly lower than last time. I didn’t associate these symptoms of an eating disorder with my experienced reality, because I wasn’t aware that some of the challenges I had could lead to developing one of those.

What were those challenges? The key words here are control and predictability, or rather the lack of these. I had been improving my health for little less than a year when the eating disorder started sprouting. At this time, I had just finished my last year of secondary school and was facing a period of great uncertainty. My long term plan was to start university, which was something I looked forward to immensely, but I wanted to take a leap year both in order to get a break from school and try something different, and because my dad had invited me for a three-month trip to China, where he was going to work. Furthermore, the plan was for me to move out of my parents’ home and into an apartment with a close friend once I returned from abroad, and over the course of the summer, it was decided that my parents and brother would be moving away from the home I grew up in as well. This move ended up taking place while my father and I were in China.
This all turned out to be much more change than I could handle. The whole summer I went around with a nagging feeling of anxiety in the background, and I couldn’t figure out how to verbalize it. Each time my parents’ moving plans were brought up, I wanted to cry – my mood was spoiled no matter how happy I had felt the moment before – and I didn’t understand why. I felt uncertain in regards to both moving in with my friend and going to China, but I didn’t feel I could say anything about it, for several reasons. Through my whole life, my own and others’ perception of me was that of someone fussy, and I knew I had a tendency of giving up too quickly and not trying out new things – I wanted to change this, especially since I was about to become an adult and enter a new phase of my life. Besides, everything was already planned out; I didn’t want to be a bother and complicate things. My anxiety grew throughout the summer, and the symptoms of my eating disorder accordingly. In the weeks before it was time to leave for China, I spent even more time working out, my internal reasoning being that the food in China was probably fatty and that I wouldn’t have much time for exercise (even though I was going there to do kung fu), so I ought to lose as much weight as possible so that it would be okay if I gained some back.

In August, everything I owned was packed into moving boxes and a single suitcase, and I was off to China. I remember sitting in the airport train, looking at my reflection in the window and thinking unhappily, “I’ve gotten so nicely skinny – I probably can’t maintain that over there.” Today, looking at pictures taken around that time, I think I look fat in them. I had lost about three kilos during June and July, but after three months in China, at least 15 kilos were gone. They continued to fall off my body like dead leaves once I returned home.

In China I was miserable. Some homesickness in the beginning was to be expected, but in my case it never went away. If anything, I might have gotten slightly used to the painful longing. When I look back today, I can see that I felt I had lost all control of my life. Not only did I know that I had a minimal amount of influence on the huge moving process going on back in Denmark, even though I wanted to participate (I had a lot of things to deal with regarding economy, change of address etc.), but in China, too, things wouldn’t work out for me. I took kung fu classes and Chinese classes a few times a week, but had a lot of trouble filling out the rest of my time. Throughout my entire childhood and youth, I had always been working on some sort of creative project, often to the point of not always feeling like I had time to go to school, so everyone, me included, had expected me to spend the journey and the rest of my leap year drawing and writing. But now, I could suddenly produce nothing. I had also been planning on meeting new, exciting people in China, but having never been very good at socializing, I had no idea how to do that. Sure, I had the theory – go places, talk to people – but it was too overwhelming to figure out how to use it in practice. The few conversations I had never led to any real relations, and I couldn’t handle going places where I didn’t have a specific plan for what to do. To fill out my time, as well as regain some control, I started exercising an extreme amount and be very careful about what I ate. I don’t want to go into details here, but if you’ve dealt with eating disorders, you probably know what I’m talking about.

After about six months of treatment, I’ve been able to identify how my eating disorder and my autism spectrum profile are closely linked. It has to do with both the challenges/problems I had, as well as how I reacted to them (that is, by developing my ED).
I’ve always known that I function best with a specific plan to follow, but it wasn’t until now I’ve realized to what great extent this is true. Without the secure “attending school” context I had been living in heretofore the uncertainty in my life was simply too great. This need I have originates in an atypical imaginative ability – I might be creative, but when it comes to deciding what to do, I’m completely unable to manage the situation if I have too many non-concrete possibilities. I need specific options. Otherwise I’m unable to imagine situations different than the one I’m in at that exact moment – this explains why I couldn’t explain the anxiety I felt towards my parents’ and my own moving. I couldn’t verbalize the problem because the problem was that I couldn’t imagine it. On top of that, I couldn’t imagine how to improve the situation, so I assumed that there was no solution at all. It’s the same reason that I couldn’t get started on any creative project or go meet people, because I didn’t know where to begin or where to go next, and then I could do nothing but withdraw and proceed unchanged, passively.
This challenged imaginative ability can also explain parts of my ED. Eating less and thus lose weight is a nice, tangible type of control – it’s logical, predictable to a certain extent, and the result, a weight loss, is objective and doesn’t leave much room for interpretation. With the internet at hand, I could easily look up nutrition values and calorie charts, and something like exercise and diet is a great opportunity for planning and scheduling. So this meant not only that the eating disorder had a solid foundation, but also that it has been able to maintain its grasp on me for a very long time. When I came home from China, I actually felt I had hit my target weight, and yet I couldn’t stop losing more. This was because I continued to eat and exercise almost exactly like I had done so far – I was afraid to do anything else, because I couldn’t imagine what kind of effect it would have on my body, my weight, my life – I just assumed it would be the worst imaginable.
Here you might be tempted to think that all the aforementioned research I had done on calories and metabolism would mean that I would have no problem figuring out how my body would react to more food, but this can be explained with another challenge many autistic people face. Namely problems with experience application – if a situation is similar to some one has been in before, yet has some differing property, it’s easy for a person with an ASP to perceive it as an entirely new kind of situation, where previous experiences don’t apply. This meant that during my treatment, I constantly felt the need to “test” the diet I had been given: If I eat a little less than this, will I gain weight anyway? How much can I eat while still losing weight? I gained weight last week – will I gain the same amount if I have eggs instead of tuna for lunch? I have a need for much more specific information than is appropriate or practical, which gives the eating disorder a lot of power.

Another, and perhaps more tangible, connection between autism and eating disorders is sensory processing. A characteristic of autism spectrum profiles is that one perceives and processes sensory inputs differently than neurotypical people; this is what causes a lot of autistic people to have trouble with noise, light, facial expressions, eye contact and/or many other things. Another way this manifests itself is through the relationship with food. Like many other people with ASPs, I’ve always been a very picky eater. Not only the taste needed to be just right (and I mean just right; I’ve never been able to eat anything I didn’t think tasted nothing short of wonderful), but the consistency, smell and sometimes colour of the food were huge factors in whether I’d like it or not. That alone is perfect nourishment for an eating disorder – it’s very easy to develop a very restricted diet when for one reason or another you don’t feel that you can eat certain things, especially if you have psychological reasons to not want to eat on top of it.
Furthermore, it’s not only extern sensory inputs that are processed differently. Signals from the person’s own body, too, can be hard to discern. In my case this has meant that I have trouble figuring out whether I’m hungry or full, or what the cause of pain, tiredness, dizziness etc. is. In addition, the latters are sensations that as a child I’ve felt very strongly, and I’d often inform my parents or other adults about them as soon as they arose. Since there was rarely any particular or serious reason for my malaise, I’d be told to ignore it – and when you’ve spent your whole life practicing ignoring the signals your body is sending you, it’s easy to believe your eating disorder when it says that the hunger you’re feeling is fake and meaningless.

Many factors are in play here, and I have no doubt that there are many more than the ones I’ve mentioned. Especially if you look at those that I haven’t been affected by personally, but which have great significance for other people with both autism spectrum profiles and eating disorders. For example, I haven’t mentioned many particular social challenges, but they definitely play a part as well when you look at someone’s self-esteem, which often is significant in developing an ED. Because of this, I encourage anyone reading this and who also has both an ASP and an ED to write their experience down.

Because I believe that it’s useful knowledge. Eating disorders – and the autism spectrum, for that matter – carry a lot of misconceptions and negative connotations. If we can spread enlightenment and information to doctors, other professionals, as well as the affected themselves, I imagine that it’s possible to help many people.

onsdag den 21. maj 2014

Spiseforstyrret på Autismespektret - En Fortælling

I løbet af det sidste halve år har jeg fundet ud af to ting om mig selv: At jeg har en autismespektrumprofil, og at jeg har en spiseforstyrrelse. Det med autismeprofilen er noget jeg har tænkt over og mistænkt mig selv for en stor del af mit liv, mens spiseforstyrrelsen kom som et lyn fra en klar himmel for mig. Fælles for dem begge er dog, at jeg i dag kigger tilbage på så mange ting der er sket eller jeg har gjort og tænker, ”Hvordan i alverden var der ikke nogen der opdagede det noget før?” Svaret synes at være mangel på information, eller rettere mangel på information formidlet på en hensigtsmæssig facon.

Flere undersøgelser viser at der er sammenfald mellem det at have en autismespektrumprofil og det at få en spiseforstyrrelse (i hvert fald hos piger, men hvorfor der skulle være forskel hos drenge eller nonbinære personer, kan jeg ikke se nogen afgørende grund til (jævnfør evt. forrige indlæg)). Man er kommet frem til resultatet ved at måle de såkaldte empati-kvotienter og systematiserings-kvotienter hos en række piger, hvor man ganske rigtigt har kunnet se at mange af pigerne med spiseforstyrrelser fik et testresultat der mindede om det hos en person med en autismespektrumprofil.

Forsøgsresultaterne giver god mening for mig, men noget af det allervigtigste fremgår ikke af dem: Nemlig præcis hvad spiseforstyrrelser og autismespektret har med hinanden at gøre – hvad er det, der er sket med de her personer? Er der tale om kausalitet eller korrelation? Jeg sad i en lignende situation da jeg selv opdagede at jeg havde henholdsvis det ene og det andet. Jeg kunne først indse og acceptere at jeg har en autismespektrumprofil, da jeg bevægede mig væk fra den ellers udmærkede faglitteratur, der beskrev ”symptomer”, ”problematikker” og ”pædagogiske redskaber”, og læste historier af autister, der ud fra deres egen synsvinkel bare fortalte om deres liv – hele deres ganske naturlige liv. Min spiseforstyrrelse opdagede jeg også først, da jeg blev klar over at det kunne handle om noget helt andet end lavt selvværd og et ønske om at være smuk. Med andre ord savner jeg personlige beretninger, der kan forklare hvad der sker inde i hovedet – inde i personens egen bevidsthed – frem for ydre symptomer og neurologiske årsager.

Derfor dette indlæg – jeg vil give mit eget bud. Her er min historie.

Hvis man for bare et år siden havde spurgt mig, hvilket psykisk problem jeg mente det var mest sandsynligt jeg ville komme til at kæmpe med, ville ”en spiseforstyrrelse” have været mit sidste bud. Alt hvad jeg vidste om spiseforstyrrelser lå uendeligt langt fra min egen selvopfattelse: Jeg havde god selvtillid og godt selvværd (af og til blev jeg endda kaldt arrogant), jeg bekymrede mig ikke specielt meget om hvad andre tænkte om mig og selvom jeg var lidt kraftig, havde jeg ikke nogen særlig interesse i eller motivation til at tabe mig. Som hos de fleste andre med spiseforstyrrelser startede den også som noget særdeles positivt, nemlig med at jeg grundet et generelt ønske om at blive sundere og få et bedre helbred, begyndte at spise anderledes og motionere mere, og så var det vægttab, der fulgte, blot en bonus. Selv da jeg var begyndt at motionere i mindst en time om dagen, hver dag, særligt lige efter jeg havde spist og derfor følte mig ”for mæt”, ringede der ingen alarmklokker i mit hoved når jeg steg op på vægten og følte en mærkelig tilfredshed af at se tallet være en smule lavere end sidste gang. Jeg forbandt ikke de her symptomer på en spiseforstyrrelse med min levede virkelighed, for jeg var ikke klar over at nogle af de udfordringer jeg havde i mit liv kunne lede til at man udviklede sådan en.

Hvad var det for nogen udfordringer? Nøgleordene er kontrol og forudsigelighed, eller rettere manglen på disse. Jeg havde været i gang med at få en sundere livsstil i et lille års tid, da spiseforstyrrelsen begyndte at udvikle sig. På det tidspunkt var jeg lige blevet færdig med mit sidste år i gymnasiet, og jeg stod over for en periode med stor usikkerhed: Min langsigtede plan var at begynde på universitetet, hvilket jeg glædede mig enormt meget til, men jeg havde planlagt et sabbatår både for at få en pause fra skolegang og prøve noget andet, og fordi min far havde inviteret mig på en tre-måneders tur til Kina i august, hvor han skulle på arbejdsrejse. Planen var desuden at jeg skulle flytte hjemmefra og sammen med min gode ven når jeg kom hjem fra Kina, og i løbet af sommerferien blev desuden besluttet at også mine forældre og bror skulle flytte fra det hjem, hvor jeg havde boet siden jeg var to år gammel. Denne flytning endte også med at skulle foregå mens min far og jeg var i udlandet.

Det viste sig at være meget mere forandring, end jeg kunne håndtere. Hele sommeren gik jeg rundt med en nagende stress i baggrunden, som jeg ikke rigtig kunne finde ud af at sætte ord på. Hver gang mine forældres flytteplaner blev bragt op, fik jeg lyst til at græde – jeg blev i dårligt humør uanset hvor lykkelig jeg havde følt mig sekundet før – og jeg forstod ikke hvorfor. Jeg følte mig både usikker på det at skulle flytte sammen med min ven, og på turen til Kina, men følte ikke at jeg kunne sige noget om det, af flere forskellige grunde. Gennem mit liv har det været min og andres opfattelse at jeg var ret pylret, og jeg vidste godt at jeg havde haft tendens til at give op for hurtigt og ikke turde prøve nye ting – dette var noget jeg gerne ville ændre, især nu hvor jeg skulle til at være voksen og begynde en ny fase i mit liv. Desuden var det hele jo planlagt; jeg havde ikke lyst til at være til besvær og komplicere tingene, så en masse blev nødt til at blive lavet om. Min stress tog til i løbet af sommeren, og dermed også symptomerne på min spiseforstyrrelse; I ugerne op til at jeg skulle rejse, trænede jeg ekstra meget, med det argument i mit hoved at maden i Kina sikkert var fed og jeg ikke ville have tid til så meget træning (selvom et af formålene med at tage af sted var, at jeg skulle dyrke kung fu), så jeg måtte hellere tabe mig så meget som muligt, så det ikke ville gøre så meget at tage lidt på igen.

I august var alt hvad jeg ejede så pakket ned i flyttekasser og en enkelt kuffert, og jeg tog til Kina. Jeg husker at jeg sad i toget til lufthavnen og kiggede på mit spejlbillede i vinduet mens jeg ulykkeligt tænkte, ”Jeg er blevet så pænt tynd – det kan jeg sikkert ikke vedligeholde derovre.” I dag synes jeg at jeg ser tyk ud på billeder, der er taget lige omkring dette tidspunkt. Jeg havde tabt mig ca. tre kilo i løbet af juni og juli, men efter tre måneder i Kina havde jeg smidt mindst 15 kilo. De fortsatte med at rasle af mig, efter jeg kom hjem.

I Kina var jeg bundulykkelig. Lidt hjemve i starten var at forvente, men den forsvandt ikke på noget tidspunkt, selvom jeg måske vænnede mig lidt til længslen. Når jeg tænker tilbage i dag kan jeg se, at jeg i endnu højere grad følte at jeg havde mistet kontrollen over mit liv. Ikke blot vidste jeg at der hjemme i Danmark var gang i en større flytningsproces, som jeg ikke kunne få særlig meget indflydelse på fra den anden side af jorden, selvom jeg gerne ville og burde (der var jo en masse der skulle ordnes i forhold til økonomi, adresseskift osv.), men jeg kunne heller ikke rigtig få tingene til at fungere i Kina. Jeg gik til kung fu og kinesiskundervisning et par gange om ugen, men havde svært ved at udfylde det resterende af min tid. Gennem hele min barn- og ungdom havde jeg altid haft et eller andet kreativt projekt i gang, ofte til sådan en grad at jeg ikke altid syntes jeg havde tid til at gå i skole, så vi havde alle regnet med at jeg skulle bruge både rejsen og resten af mit sabbatår på at tegne og skrive, men nu kunne jeg pludselig ikke producere noget som helst. Jeg havde også haft en idé om at skulle møde nye, spændende mennesker, men i kraft af at jeg aldrig har været specielt god til at socialisere, anede jeg ikke hvordan jeg skulle bære mig ad. Jo, jeg havde teorien – tag steder hen, snak med folk – men jeg kunne ikke overskue at bruge den i praksis. De få samtaler jeg havde med andre, kunne jeg ikke finde ud af at føre videre til en egentlig relation, og jeg kunne ikke overskue at tage steder hen, hvor der ikke var en fast plan for hvad jeg skulle lave. For at fylde tiden ud, samt genvinde noget kontrol, begyndte jeg at træne voldsomt meget og gå højt op i hvad jeg spiste. Jeg vil ikke gå i detaljer her, men hvis I kender til spiseforstyrrelser, ved I sikkert hvad jeg snakker om.

Efter et halvt års tid i behandling, har jeg kunnet identificere hvordan min spiseforstyrrelse er tæt forbundet med min autismespektrumprofil. Det har at gøre både med de udfordringer/problemer jeg havde, samt hvordan jeg reagerede på dem, altså ved at udvikle spiseforstyrrelsen.
Jeg har altid vidst at jeg fungerede bedst, når jeg havde en konkret plan at følge, men det er først nu at jeg har indset i hvor høj grad dette gælder. Uden den faste ”gå i skole”-ramme jeg hidtil havde levet under, var usikkerheden simpelthen for stor. Behovet udspringer fra en atypisk forestillingsevne – nok er jeg kreativ, men når det kommer til at beslutte hvad jeg skal lave eller hvad jeg synes der skal gøres, kan jeg simpelthen ikke overskue det, hvis jeg har for stort råderum. Jeg har brug for nogle konkrete valgmuligheder. Ellers er jeg ikke i stand til at forestille mig situationer der er anderledes end den hvori jeg er i samme øjeblik – dette forklarer hvorfor jeg ikke kunne forklare den stress jeg følte i forbindelse med min og mine forældres flytninger. Jeg kunne ikke sætte ord på problemet, fordi problemet netop var, at jeg ikke kunne forestille mig hvordan det ville være – inklusive hvad der evt. kunne gå galt. Og jeg kunne desuden ikke forestille mig, hvordan man kunne gøre det bedre, så jeg antog at der slet ikke var en løsning. Af samme grund kunne jeg ikke komme i gang med nogen kreative projekter, eller tage ud og møde folk – jeg kunne ikke finde ud af hvor jeg skulle starte, eller hvad det næste skridt skulle være, og så kunne jeg kun trække mig tilbage og fortsætte passivt som hidtil.
Denne udfordrede forestillingsevne kan også forklare dele af min spiseforstyrrelse. At kunne spise mindre og dermed tabe sig er en dejlig konkret form for kontrol – den er logisk, til en vis grad forudsigelig og resultatet, et vægttab, er objektivt og til at tage og føle på. Med internettet ved hånden kunne jeg nemt slå næringsindhold i mad og kalorieforbrænding ved forskellige typer motion op, og ting som træning og kost giver rig mulighed for plan- og skemalægning. Så dette gav ikke blot spiseforstyrrelsen et godt fundament at starte på, men min forestillingsevne gjorde også at den i lang tid har kunnet have et stærkt tag i mig. Da jeg var kommet hjem fra Kina og egentlig havde nået en vægt jeg var tilfreds med, kunne jeg alligevel ikke holde op med at tabe mig, fordi jeg fortsatte med at spise og motionere på stort set samme måde som jeg havde gjort hidtil. Jeg var bange for at gøre andet, fordi jeg ikke kunne forestille mig hvilken effekt det ville have på min krop, min vægt, mit liv – jeg antog bare at det ville være det værst tænkelige.
Her skulle man næsten tro, at alt de førnævnte research jeg havde gjort om kalorier og forbrænding ville gøre, at jeg sagtens kunne regne ud hvordan min krop ville reagere på at få mere at spise, men det kan forklares ved en anden udfordring, autister ofte har. Nemlig problemer med erfaringsoverførelse – hvis en situation, der ligner en man har været i før, alligevel har noget anderledes ved sig, kan den nemt hos en person med en autismeprofil opfattes som en helt ny slags situation, hvor allerede gjorte erfaringer ikke kan benyttes. Under min behandling oplevede jeg derfor, at jeg hele tiden skulle ”teste” den kostplan jeg skulle følge – hvis jeg spiser lidt mindre end der står, vil jeg så tage på alligevel? Hvor lidt skal jeg spise for at tabe mig? Nu tog jeg på i sidste uge – hvis jeg i denne uge spiser spejlæg i stedet for tun til frokost, vil jeg så tage det samme på? Jeg har behov for meget mere specifikke og konkrete oplysninger end er hensigtsmæssigt, hvilket giver spiseforstyrrelsen mulighed for at beholde en stor del kontrol.

En anden, og måske mere konkret, sammenhæng mellem autisme og spiseforstyrrelse, er sansebearbejdning. Et karaktertræk ved autismespektrumprofiler er, at man opfatter og bearbejder sanseindtryk på en anden måde end neurotypiske mennesker; det er det der gør, at mange autister har det svært med larm, lys, ansigtsudtryk, øjenkontakt og/eller meget mere. En måde dette også viser sig på, er gennem forholdet til mad. Som mange andre personer med autismespektrumprofiler, har jeg altid været meget kræsen – ikke bare smagen skulle være i orden (og helt i orden; jeg har aldrig kunnet spise noget som jeg ikke syntes smagte skønt og intet mindre), men også madens konsistens, lugt og nogen gange farve havde betydning for om jeg kunne lide den. Det i sig selv giver rig mulighed for en spiseforstyrrelse – det er rigtig nemt at få en meget begrænset diæt, hvis man af den ene eller anden grund ikke føler at man kan spise bestemte ting, især hvis man også har psykiske årsager til ikke at ville spise.
Det er desuden ikke kun eksterne sanseinputs, som bliver bearbejdet anderledes – også signaler fra personens egen krop kan være svære at aflæse. Dette har i mit tilfælde medført, at jeg har svært ved at mærke om jeg er mæt eller sulten, eller hvad årsagen til ting som smerter, træthed eller svimmelhed er. De sidstnævnte er derudover ting som jeg især som barn har følt meget kraftigt, og ofte har gjort mine forældre og andre voksne opmærksomme på, så snart jeg kunne mærke dem. Da der sjældent var nogen egentlig eller nogen alvorlig årsag til mit ildebefindende, fik jeg at vide at jeg skulle prøve at ignorere det – og når man hele sit liv har øvet sig i at ignorere signalerne fra sin egen krop, er det nemt at tro på sin spiseforstyrrelse når den fortæller en, at den sult man føler er falsk og ubetydelig.

Der er mange faktorer der spiller sammen, og jeg er ikke tvivl om at der er mange flere end jeg har nævnt her. Især hvis man kigger på dem, der ikke har berørt mig personligt, men som har betydning for andre personer med både autismespektrumprofiler og spiseforstyrrelser. For eksempel har jeg ikke nævnt så mange af de konkrete sociale udfordringer, men de spiller helt sikkert også ind, hvis man kigger på noget der også ofte ligger grund for spiseforstyrrelser, nemlig selvværd. Jeg vil i den sammenhæng opfordre til, at hvis man læser dette og selv har en autismespektrumprofil samt en spiseforstyrrelse, at man skriver sin egen oplevelse ned.

For jeg mener at det er nyttig viden. Spiseforstyrrelser – og autismespektret, for den sags skyld – har mange fordomme og fejlantagelser forbundet med sig. Hvis vi kan sprede oplysning og informationer til læger, andre fagfolk og de berørte selv, forestiller jeg mig at det er muligt at hjælpe mange.

søndag den 18. maj 2014

(To Arms against) The Gender Tertiary

No one who knows me should be surprised to hear that I’m violently against the gender binary. That is, the idea that only two genders exist, female and male. Since I have a gender identity that doesn’t fit into either of those boxes myself, I’ve been oppressed by this system my whole life and continue to be today. My personal security number and, thus, every single of my legal documents do not reflect my identity, I often have to use dressing rooms or public bathrooms that are not meant for me, and in 99 % of cases strangers who meet me will assume that I’m something I’m not. If I choose to look up from my own bellybutton (every now and again one has to, after all), I can see that this system is also hurting the rest of society, including those who do have a binary gender identity. The gender binary dictates not just that only men and women exist, but also that there are specific ways to be one or the other, and that people of one gender are good at some things and people of the other are good at other things. Have you, for example, noticed how there are rarely changing tables for babies in men’s bathrooms? Or how women are paid lower salaries than men doing the same jobs of the same quality? So count me in for destroying the gender binary, preferably as quickly as possible – please and thank you. As I said, no one should be surprised.

But I did surprise myself when I suddenly realized I was facing another enemy. An enemy that I had taken part in creating and even promoting and praising. Creative as I am, I’ve decided to call this enemy the gender tertiary.

As the name suggests, the gender tertiary is the idea that three genders exist: Male, female, and other. In a world operating according to this system, one’s social security number (at least in Denmark) would end in an odd number if one’s a man, an even number if one’s a woman, and, for example, 0 or an X or something similar if one belongs to the last category. People would hopefully have a better and broader understanding of the fact that someone can “act like a woman” and still be a man, and of course everyone would receive equal pay for equal work. This all sounds great – it’s the kind of world I might fantasize about living in. So why am I suddenly calling this system the enemy?

You see, as the name ‘gender tertiary’ also suggests, this system is actually very similar to the gender binary, and I’ll go as far as to claim that they are cut from the same piece.

Notice, first of all, the names of the three categories of gender, male, female and “other”. We still have the two, primary genders, and anything that doesn’t fit those will be squished into a leftover label. We are defined as “the others”, the exception. This problem isn’t one I’ve made up to fit my own, invented world order, because it’s present out in the real world. Our society is, thankfully, on its way to solve some of the issues the gender binary causes. For example, the governments of Australia and Germany (among others) have recognized a third option. But here we see the problem surfacing in phrases such as “’indeterminate’ gender” and “non-specific”. If one is not a man or a woman, one is something uncertain third thing.
The real world is different. I know many people identifying as neither male nor female, and very few of them identify as the same gender as each other. Some are genderless, some feel they’re in between male and female, others somewhere completely different, some have a bit of this and that, others describe it as being one thing on the outside/in some situations/on Sundays, and another thing inside/at other times/on Tuesdays. Personally, the best way for me to describe my gender identity is by saying that if ‘girl’ is red and ‘boy’ is blue, my gender is orange.
The previous paragraph was the hardest in this entire essay for me to write, because our language doesn’t provide me with the words I need to describe this gender diversity – not at all. I have only the words “male” and “female” and their derivations to define gender, including those that differ from those two options. Even the words “androgynous”, “nonbinary”, and “genderqueer”, which I usually use to describe my identity, all have some sort of connection to the two binary genders. Respectively, they’re a mixture, something not belonging to those two specifically, and something “different” or “queer”. And this is a problem, because it makes it impossible not to define us as “the others”.

What should we do instead? Perhaps we need a gender quartary, quintary, octonary, n-airy? Probably not – it’s presumably impossible to create a complete system encompassing all possible gender identities.
Perhaps our way of thinking about gender is fundamentally flawed – more flawed than we’ve already established, I mean. Genders are not categories or boxes for people to be put into, but rather something completely unique to the individual person. Perhaps no two genders are the same – even in the case of those who identify inside the binary. I refuse to believe that all women perceive their genders as the same – as the same shade of red.
This would not be the same as saying that the categories should be off-limits. It shouldn’t be the case that one person gets to claim a specific gender identity, and I promise I won’t be insulted if someone comes up to me, saying, “hey, my gender is orange, too.” But it would be beneficial to consider the categories less important. Throw away the idea that people’s genders should be present in their social security numbers. Stop placing all the tight fitting shirts in flimsy, transparent fabric on one side of the store, and all the box shaped t-shirts on the other. Let people change and pee wherever they want, and let go of the fear of someone seeing a body that’s different from their own (every penis-haver doesn’t look the same, either, you know). Let people define their own genders, and believe them when they announce the result – and don’t judge them accordingly.


In short: Let’s get rid of the rigid gender systems. 

lørdag den 17. maj 2014

(Til kamp mod) Det Tertiære Kønssystem

Det skulle ikke undre nogen, der kender mig, at jeg er voldsomt modstander af det binære kønssystem, altså opfattelsen at der kun findes to køn: Kvinde og mand. Da jeg selv har en kønsidentitet der falder uden for de to kasser, er jeg hele mit liv blevet voldsomt undertrykt af dette system og bliver det fortsat til den dag i dag. Mit CPR-nummer og dermed alle mine lovlige dokumenter afspejler ikke min identitet, jeg må ofte benytte omklædningsrum eller offentlige toiletter der ikke er beregnet til mig og i 99 % tilfælde vil fremmede, der møder mig, antage at jeg er noget jeg ikke er. Hvis jeg vælger at se lidt længere end min egen næsetip (det skal man jo også en gang imellem), kan jeg se at dette system også skader resten af samfundet, selv dem, der faktisk har en binær kønsidentitet. Det binære kønssystem siger ikke blot at der kun findes mænd og kvinder, men også at der er bestemte måder at være det ene eller det andet på, og at folk af det ene køn er gode til visse ting og folk af det andet køn gode til andre ting. Har I for eksempel lagt mærke til at der sjældent er skifteborde til små børn på herretoiletter? Eller at kvinder får lavere løn end mænd, der udfører det samme arbejde af samme kvalitet? Så jeg stemmer for at vi udrydder det binære kønssystem, og helst så hurtigt som muligt – tak. Som sagt kan det ikke undre nogen.

Til gengæld overraskede jeg mig selv ved pludselig at indse at jeg stod ansigt til ansigt med en anden fjende. En fjende, som jeg selv har været med til at skabe og endda promovere og rose. Dette er en fjende, som jeg så opfindsomt har valgt at kalde det tertiære kønssystem.

Som navnet antyder, er det tertiære kønssystem idéen om, at der er tre køn: Mand, kvinde og andet. I et samfund der opererer under dette system, vil ens CPR-nummer fx ende med et ulige tal hvis man er mand, et lige tal hvis man er kvinde, og 0, X eller lignende hvis man falder under den sidste kategori. Folk ville forhåbentligt have en bedre og mere åben forståelse for, at man altså godt kan ”opføre sig som en kvinde” og være en mand alligevel, og alle skulle naturligvis have den samme løn for det samme arbejde. Det lyder jo rigtig godt – det er sådan en verden jeg kan finde på at gå rundt og fantasere om at jeg lever i. Så hvorfor kalder jeg pludselig dette system en fjende?

Jo, for som navnet ’tertiært kønssystem’ også antyder, minder dette system faktisk rigtig meget om det binære kønssystem, og jeg vil vove at påstå, at de udspringer af én og samme rod.

Bemærk for det første navnene på de tre kønskategorier; mand, kvinde og ”andet”. Vi har altså stadig de to, primære køn, og alt, der ikke passer ind, bliver most sammen under en fælles rest-betegnelse. Vi bliver gjort til ’alle de andre’; til undtagelsen. Problematikken er heller ikke én, jeg sidder og finder på i min egen, selvopfundne verdensorden, for den viser sig ude i virkeligheden. Vores samfund er nemlig – heldigvis, kan man jo sige – i gang med at arbejde på nogle af dets kønsbinære problemer: For eksempel har man i Australien og Tyskland (m.m.) anerkendt en tredje mulighed. Men her ser vi problemet i sprogbruget, hvor journalisterne bruger vendinger som ”’indetermnate’ gender” og ”non-specific”. Hvis man ikke er mand eller kvinde, er man noget ubestemmeligt tredje.

Virkeligheden ser anderledes ud. Jeg kender mange der identificerer som hverken mænd eller kvinder, og meget få af dem identificerer alligevel som det samme køn. Nogle er kønsløse, nogle føler de ligger mellem mand og kvinde, andre et helt andet sted, nogle har lidt af hvert, andre beskriver det som værende én ting udenpå/i visse situationer/om søndagen og en anden ting indeni/andre gange/om tirsdagen. Personligt kan jeg bedst beskrive min kønsidentitet som at hvis ’pige’ er rødt og ’dreng’ er blåt, så er mit køn orange.
De foregående sætninger har været de sværeste i hele dette essay for mig at skrive, for vores sprog giver mig slet ikke de ord jeg skal bruge for at beskrive denne kønsmangfoldighed. Jeg har kun ordene ”mand” og ”kvinde” og deres afarter til at benævne køn, inklusive dem, der er noget andet. Selv ordene ”androgyn”, ”nonbinær” og ”genderqueer”, som jeg ellers bruger til at beskrive min identitet, har alle en eller anden forbindelse til de to binære køn. De er, henholdsvis, defineret som en blanding, noget andet end de to, og noget ”anderledes”. Og det er et problem, for så er det jo umuligt ikke at gøre os til ”de andre”.

Hvad skal man gøre i stedet? Måske lave et quartiært, quintiært, octonært, n-ært kønssystem? Næppe – det formentligt umuligt at skabe et fuldendt system, der helt omfatter alle mulige kønsidentiteter.

Måske er vores måde at opfatte køn på grundlæggende defekt – altså endnu mere end vi allerede har etableret. Køn er ikke kategorier eller kasser man kan putte folk i, men snarere noget helt unikt for den enkelte person. Måske findes der ikke to ens køn – selv ikke hos dem, der identificerer sig som et af de binære. Jeg nægter nemlig at tro på, at alle kvinder opfatter deres køn ens – som den samme nuance af rød.
Dette ville ikke være ensbetydende med, at man ikke må bruge kategorierne. Det skal ikke være sådan, at én person har eneret på en bestemt kønsidentitet, og jeg skal nok lade være med at blive fornærmet hvis nogen kommer hen til mig og siger ”hey, mit køn er også orange”. Men det ville være fordelagtigt at gøre kategorierne mindre vigtige. Drop det der med, at man skal kunne aflæse folks køn ud fra deres CPR-nummer. Hold op med at have de figursyede skorter af tyndt, gennemsigtigt stof hængende i den ene side af tøjforretningen, og de kedelige, kasseformede T-shirts i den anden. Lad nu bare folk klæde om og tisse hvor de har lyst, uden at være bange for at nogen ser en krop der er anderledes fra deres egen (alle folk med penisser ser altså heller ikke ens ud). Lad folk selv definere deres køn, og tro på det resultat de når frem til – og lad være med at døm dem på baggrund af det.


Kort sagt: Lad os afsystematisere køn.