Eighth of Asperger’s Ten Traits – “Trapped, […] pretending to be normal”

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“8) We are ourselves and we aren’t ourselves. Between imitating others and copying the ways of the world, and trying to be honest, and having no choice but to be “real”, we find ourselves trapped between pretending to be normal and showing all our cards. It’s a difficult state. Sometimes we don’t realize when we are imitating someone else or taking on their interests, or when we are suppressing our true wishes in order to avoid ridicule. We have an odd sense of self. We know we are an individual with unique traits and attributes, with unique feelings, desires, passions, goals, and interests, but at the same time we recognize we so desperately want to fit in that we might have adapted or conformed many aspects about ourselves. Some of us might reject societal norms and expectations all together, embracing their oddities and individuality, only to find themselves extremely isolated. There is an in between place where an aspie girl can be herself and fit in, but finding that place and staying in that place takes a lot of work and processing. Some of us have a hard time recognizing facial features and memorize people by their clothes, tone of voice and hairstyle. Some of us have a hard time understanding what we physically look like. We might switch our preference in hairstyles, clothes, interests, and hobbies frequently, as we attempt to manage to keep up with our changing sense of self and our place. We can gain the ability to love ourselves, accept ourselves, and be happy with our lives, but this usually takes much inner-work and self-analysis. Part of self-acceptance comes with the recognition that everyone is unique, everyone has challenges, and everyone is struggling to find this invented norm. When we recognize there are no rules, and no guide map to life, we may be able to breathe easier, and finally explore what makes us happy.”

Used with permission from @everydayaspergers. Originally published in Samantha Croft‘s -now former- blog, Everyday Asperger’s, as The Ten Traits.

One of my most intriguing oddities (and I started to adore them all, even when they’re naughty) is the constant failure to recognise my colleagues outside work. Working in a hospital environment requires some sort of uniform, which together with the background provided by the site’s micro- and macro-environment, form the “picture” which an autistic brain memorises.

Now, that wouldn’t be a problem for the neurotypical individual, but it does become a major one for the neurodivergent, because as Samantha brilliantly mentions in her article, autistics seem to memorise people by anything else but their faces. And this oddity doesn’t become obvious until one day, a colleague tells you with a smile/smirk on their faces, that it’s not nice to pass them by at the mall, or another has to stand in your way, looking rather puzzled for the “embarrassing” time your brain needs to remove the previous details from around their faces, implementing them into the new environment, finally triggered by their perplexed voices asking you why would you pretend not to see them?

Been there, done that, now and again, and again, and again…

But the worst of it all, is the involuntary compulsion to act “normal”, switching automatically to puerile excuses of not having seen them, having a headache, being tired, being busy, etc, none of them actually true.

What I am step-by-step realising, is a uniqueness I don’t want to give up anymore, an increasing desire and practical moves to “reject societal norms and expectations all together”, “embracing my oddities and individuality”, caring less and less about finding myself “extremely isolated”, because if that means getting finally isolated from the vain, abusive, infatuated stupidity of “normal” societal details thinking that seeing me is knowing me, it’s more than welcome.

After all, if I am autistic, my world should be myself…

Stimming (Self-stimulatory Behaviour / Repetitive Stereotyped Activity) – 1

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In her seminal book “The Autistic Spectrum” (1996), Lorna Wing, OBE, FRCPsych, described what she identified as Repetitive Stereotyped Activities, to be “the other side of the coin of impairment of imagination” (pg. 45). The Autistic community has come to embrace the term stimming (as the shortened form for self-stimulation), which unfortunately acknowledges only one of Wing’s identified types, the simple ones, as these activities were further categorized as simple and elaborate. As she explains, “the simplest forms of these activities involve repetitive sensations” such as:

-tasting

-smelling

-feeling or tapping or scratching different surfaces

-listening to mechanical noises

-staring at lights or shiny things

-twisting and turning hands or objects near the eyes

-staring at things from different angles

-switching lights on and off

-watching things spinning or self-spinning

Sometimes, especially when “someone has no other way of occupying themselves“, self-injury can become a repetitive behaviour.

As I mentioned in one of my previous articles, Stimming vs Fidgeting… I believe there is a fundamental difference between fidgeting and stimming, with stimming as a mainly autism-specific Repetitive Stereotyped Activity.

In an attempt to make this article more ‘user friendly’ I’ve photographed some of my favourite stimmers (a term I use and suggest instead of stim-toys), a small American-football and two different hand strengtheners, one of rubber and the other as a small mechanical contraption, with a fountain pen as a dimension guide.

First of all, allow me to explain why I suggest stimmers. One of the reasons is the unnecessary association with toys in general which automatically follows the use of stim-toys, and the other being an even more unnecessary association with ‘toys’ of a more ‘adult’ nature…

Secondly and probably unknown to many, the word stimmer means in German amongst others tuner, used to tune musical instruments.

Now, as I explained in my  Stimming vs Fidgeting… post, stimming is fundamentally different from fidgeting because it requires the individual’s dedicated attention, and somewhat similar to a tuner, it seems to help the individual tune their sensory, cognitive and behavioural functionality.

For example, you may notice in the picture of my stimmers, that due to their material structure, they have particular surfaces, some smooth and soft such as blue rubber strengthener, rough and soft such as the small brown ball, cold and smooth such as the metal coil, strong smooth such as some parts of the mechanical strengthener or strong and rough such as other parts of it.

One may think that these differences are negligible, which may be the case for fidgeting, but not for stimming, because -at least in my case- the surface structure follows a typical need which cannot be met by any structure, but only specific ones. When I use for example, the blue rubber stimmer, my four thumb opposing fingers automatically seek the comforting ‘feeling’ provided by the four small velvety depressions found on one of its sides, and while the thumb provides support, the other four fingers are becoming anything in between trumpet key dancers and Morse code transmitters, and the choreography is endless.

In an autistic’s hand, an object becomes an objective, an instrument which tunes the complex functionality of the autistic brain, with its unusual capacity to process sensory stimuli in more areas than the specialised neurotypical brains.

 

A next post will cover the Elaborate Repetitive Stereotyped Activity, or stimming…

The “mens sana in corpore sano” War Against Autistics, Dyslexics and Dyspraxics…

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(Multiple Trigger Alert: Accounts of Abuse and Humiliation Against Autistics, Dyslexics, Dyspraxics!!!)

Please don’t be offended by this post if you’re an athlete or someone else who believes in what I consider to be the myth of “a healthy mind in a healthy body”…

Because while I don’t mind at all if you earnestly believe that your healthy mind is supposed to dwell in your healthy body, or that for you, a healthy body is supposed to be an athletic one, for me, and for innumerable other non-athletic individuals, including countless autistics and dyspraxics whose bodies were/are “chubby and ungainly” as in Silberman’s mention of Asperger’s “poor Hellmuth”, life under this despicable, “mens sana in corpore sano” banner of humiliating the weak and less able, was and it still is a living hell, having wished so many and unfortunate times to have been literally thrown down the chasms of Taygetus…

I won’t launch in any diatribes about the fact that no human progress has ever been achieved in athletic arenas, except for who can run, swim, jump, kick etc, faster, higher and stronger, but I may disrespectfully ask, why was I forced, coerced and abused into achieving the impossible with a dyspraxic body in the name of a dysfunctional “Physical Education” mentality, while NONE of my athletically abled school colleagues were ever coerced e.g. into writing poetry?

Oh, and as I’m hearing your “but you need talent to write poems” disgruntled question, I’ll venture asking if the same could be also true about physical abilities for sports? Or do you think that only the less -physically- talented/abled are “entitled” to the ridicule of an entire class/school because we can’t do push-ups, frog-leaps, high-jumps, long-jumps, hurdles, we can’t climb ropes, run fast, play football, handball, basketball, volleyball, rugby, etc, while the less creatively talented/abled are exempt?

And I’m not talking about what you didn’t like about the literature and language curriculum, because the curriculum never asked you to force yourself ALL ALONG your school years to naturally start writing lengthy poems in rhyme and meter, long before you knew what “rhyme and meter” are, while the same curriculum forced me to be the laughingstock of an entire school’s gymnasium, as year after year I landed in front of, under, on top, on the sides, but never over the vaulting horse… Standing there, head bowed, swallowing my tears, rubbing my bruises, knowing that at the bottom of the invincible climbing-rope, my overweight PE teacher is going to give me another “you should try harder, you know”…

“Shame on you! Are you stupid, or dumb?” was the “best” my maths, physics, chemistry teachers could do in order to “boost” my chances to understand algebra, analytical algebra, trigonometry calculations etc, which were for them, the epitome of a “healthy mind”, proof that you’re not “eligible” for the “retard school”…

So, there was I, clumsy representative of generations of autistics, dyslexics (dyscalculia included) and dyspraxics, unhappily looking forward to receiving at home “what I deserve” for my bad grades (after a while I wasn’t even urinating in my trousers anymore…), happily knowing that my cubes need their daily arranging, my model planes their daily aligning, my favourite book (Zaharia Stancu’s Barefoot) its (probably) 139th consecutive reading, Darwin’s “Origin of Species” its further analysis, and Miklós Nyiszli’s “Auschwitz: A Doctor’s Eyewitness Account” its horrifying impression on the mind of confused teenager…

Back in those days, no one would have thought that the chubby, big headed, silent dreamer they were abusing and humiliating for having a weird, “unhealthy” (read autistic/dyslexic/dyscalculic) mind in an unhealthy (read dyspraxic) body, would have grown to simultaneously interpret in three languages, creatively use four, understand six, using altogether eight, having self-taught himself three musical instruments, and earning (so far…) three major degrees and two postgraduates?

And as a final paradox, while in the military (you wouldn’t have believed that I’ve earned my stripes and stars once…) which I appreciated for its rule/order/hierarchy structure, they discovered quite quickly that I still can’t do more than 1 1/2 push-ups, and I still can’t climb ropes, but I’m very good at drawing complicated military maps, and I still can’t run neither much, nor fast, but I can force-march 30 km without any stops, leaving behind anyone else, arriving at the training range one hour before anyone else. And while as clumsy as a sloth when asked to run an obstacle course, it turned out that after graduating the military infirmary paramedic training, I was amongst the few to surgically remove/treat abscesses threatening to turn into septicaemias, and administer injections to infants living in remote areas, far away from regular civilian healthcare support. The “jarheads” saw not only what I can’t do, but also what I can, and facilitated my progress accordingly.

All these, and humbly much, much more, as someone who’s never been neither physically, nor mentally “healthy”, according to this planet’s favourite athletically inclined proverb.

But I could have done these, and probably much more, without the “spartan” beatings, the scorn, the shouting and the humiliation, for no other “fault” than that of having been born this way, my way…

 

Photo credits: http://helenroche.com/work/personal-and-political-appropriations-of-sparta-in-german-elite-education-napolas-and-prussian-cadet-schools

Seventh of Asperger’s Ten Traits – “We simply feel like we’ve landed on the wrong planet”

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“7) We are sensitive. We are sensitive when we sleep, maybe needing a certain mattress, pillow, and earplugs, and particularly comfortable clothing. Some need long-sleeves, some short. Temperature needs to be just so. No air blowing from the heater vent, no traffic noise, no noise period. We are sensitive even in our dream state, perhaps having intense and colourful dreams, anxiety-ridden dreams, or maybe precognitive dreams.

Our sensitivity might expand to being highly-intuitive of others’ feelings, which is a paradox, considering the limitations of our social communication skills.

We seek out information in written or verbally spoken form, sometimes over-thinking something someone said and reliving the ways we ought to have responded.

We take criticism to heart, not necessarily longing for perfection, but for the opportunity to be understood and accepted. It seems we have inferiority complexes, but with careful analysis, we don’t feel inferior, but rather unseen, unheard, and misunderstood.

Definitely misunderstood.

At one point or another, we question if in fact we are genetic hybrids, mutations, aliens, or displaced spirits–as we simply feel like we’ve landed on the wrong planet.

We are highly susceptible to outsiders’ view points and opinions. If someone tells us this or that, we may adapt our view of life to this or that, continually in search of the “right” and “correct” way.

We may jump from one religious realm to another, in search of the “right” path or may run away from aspects of religion because of all the questions that arise in theorizing.

As we grow older, we understand more of how our minds work, which makes living sometimes even more difficult; because now we can step outside ourselves and see what we are doing, know how we our feeling, yet still recognize our limitations.  

We work hard and produce a lot in a small amount of time.

When others question our works, we may become hurt, as our work we perceive as an extension of ourselves. Isn’t everything an extension of ourselves–at least our perception and illusion of reality? Sometimes we stop sharing our work in hopes of avoiding opinions, criticism, and judgment.

We dislike words and events that hurt others and hurt animals. We may have collected insects, saved a fallen bird, or rescued pets.

We have a huge compassion for suffering, as we have experienced deep levels of suffering.

We are very sensitive to substances, such as foods, caffeine, alcohol, medications, environmental toxins, and perfumes; a little amount of one substance can have extreme effects on our emotional and/or physical state.”

Used with permission from @everydayaspergers. Originally published in Samantha Croft‘s -now former- blog, Everyday Asperger’s, as The Ten Traits.

Nothing to add, nothing to deduct…

Just perfect.

Thank you Samantha 💐

Sixth of Asperger’s Ten Traits – “We have feelings of dread about even one event on the calendar”

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“6) We seek refuge at home or at a safe place. The days we know we don’t have to be anywhere, talk to anyone, answer any calls, or leave the house, are the days we take a deep breath and relax. If one person will be visiting, we perceive the visit as a threat; knowing logically the threat isn’t real, doesn’t relieve a drop of the anxiety. We have feelings of dread about even one event on the calendar. Even something as simple as a self-imposed obligation, such as leaving the house to walk the dog, can cause extreme anxiety. It’s more than going out into society; it’s all the steps that are involved in leaving–all the rules, routines, and norms. Choices can be overwhelming: what to wear, to shower or not, what to eat, what time to be back, how to organize time, how to act outside the house… all these thoughts can pop up. Sensory processing can go into overload; the shirt might be scratchy, the bra pokey, the shoes too tight. Even the steps to getting ready can seem boggled with choices–should I brush my teeth or shower first, should I finish that email, should I call her back now or when I return, should I go at all? Maybe staying home feels better, but by adulthood we know it is socially “healthier” to get out of the house, to interact, to take in fresh air, to exercise, to share. But going out doesn’t feel healthy to us, because it doesn’t feel safe. For those of us that have tried CBT (Cognitive Behavior Therapy), we try to tell ourselves all the “right” words, to convince ourselves our thought patterns are simply wired incorrectly, to reassure ourselves we are safe… the problem then becomes this other layer of rules we should apply, that of the cognitive-behavior set of rules. So even the supposed therapeutic self-talk becomes yet another set of hoops to jump through before stepping foot out of the house. To curl up on the couch with a clean pet, a cotton blanket, a warm cup of tea, and a movie or good book may become our refuge. At least for the moment, we can stop the thoughts associated with having to make decisions and having to face the world. A simple task has simple rules.”

Used with permission from @everydayaspergers. Originally published in Samantha Croft‘s -now former- blog, Everyday Asperger’s, as The Ten Traits.

In the neurotypical (NT) world, going to work next day, is just another day of going to work…

Get up, (and now I’m starring at the screen, as even the attempt of “thinking” neurotypically absolutely confuses me…), usual morning stuff, drive to work, work, drive back, evening stuff, sleep, another day tomorrow…

Compared to the above, anything in a neurodivergent’s life, even going to work, becomes a conscious “event”, which needs to be properly considered, thought through, planned, routine respected, analysed upon progression and evaluated.

To give anyone reading these posts an idea of how a neurodivergent (ND) brain functions, of what a High Functioning Autistic/Asperger’s adult’s mind has to abide by, please consider an example about stages of progress onto going to work, on a “normal” day:

-getting up in the morning without any clock, after another rough night of consciously trying to find the same position at every turn, while concentrating every time on one’s own breath in order to avoid absorbing al the chirps, cracks, breaths, squeaks, drips, ticks, tocks, sirens, etc

-consciously attempting to arrange the cover on the same side, the same way every time upon uncovering, followed by lifting left leg, right leg down, balancing left leg up and down, while body on the right side is pushed up on right elbow, left hand counterbalancing with wave motion from left side to right side down

-sitting on the side of the bed, rubbing nose/beard/nose, scratching head with right hand, planning the short walk to the slippers left exactly in the same place, by a piece of furniture which serves as a balance support for dyspraxia

-walking towards slippers, holding on to the furniture, putting on slippers, always left first, right second

-walking to the chair where depending on season and therefore temperature and air humidity, a sleeveless grey body warmer or a navy blue/black hoody is put on, back first, left arm second, right arm third, hood adjustment fourth, zipper fifth

-grab tablet on the way to toilet by placing right foot between chair and desk, hold it right hand between thumb and fingers 3, 4, 5, as index is used to open the door, while left hand pushes aside clothes on the tree hanger

-sit on the toilet, open tablet, start tablet, wait for log-on, logging on…

And I’ll stop here, for obvious reasons, even though it’s been around 1 1/2 minutes (90 seconds) since getting out of bed, with only 1438 1/2 to go until next morning’s identical/similar routine…

And EVERYTING else follows, same way, same routine, same order, with every detail thought about in advance as the minutes roll on.

So, in order to clarify why at the end of a day, a ND nearly collapses, please try to imagine the conscious thought process which has to go in our life’s each progressing detail, while all stimuli arriving through all senses are being processed throughout most of our cerebral cortex, with each and every unplanned and therefore unexpected event/detail mandatorily processed, categorised, catalogued and stored accordingly.

One of the reasons for the precise and detailed visual memory of NDs, called sometimes eidetic, is our brain’s capacity to assimilate randomly arrived information into well-established routine patterns, making therefore an incidental detail an incorporated part of a pre-existent pattern. From there, using other stored memory cues, these can be retrieved for periods of time depending on the individual’s unique neurobiology.

Would it be now maybe easier to understand why seeking refuge at home or at a safe place becomes a necessity?

And in case you still wonder why, please remember that even if our minds seem to possess peculiar computing capacities, our brains, together with our bodies, still burn the same carbohydrates as anyone else’s, making them therefore susceptible to fatigue, low fuel levels, and unfortunately burn-outs…

The difference is that while the NT brain/body engines count the carbohydrates burned per hour, the ND engines count them per minute…

Stimming vs Fidgeting…

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I personally think it is unfortunate that many NDs have so easily accepted that stimming is “just” the autistic version of fidgeting, because as I see it, the difference is actually neurobiological.

The problem starts with wrongly associating stimming with anxiety relief, concentration and other similar, secondary types of human behaviour, because while fidgeting does certainly and most of the time unconsciously assist with especially concentration or stress relief, stimming, as a behaviour sequence mostly specific to autistic conditions, is actually a primary neurobiological undertaking, with a very clear role in an autistic individual’s life.

If an autistic person would observe themselves while stimming, they would notice that the stimming activity they are engaged in, requires their dedicated attention, through which the stimming routine is carried out according to a deeply ingrained routine. Stimming is as important as any other autistic routine, probably even more important, because while other routines, e.g. replacing the toothpaste tub in the same place and at the same angle after each use (as the routine’s objective), has the toothpaste tub as its object, stimming’s object & objective are identical, permeating actually the person engaged in stimming. While stimming, the autistic individuals employ all their task specific dedicated senses. Now this wouldn’t be unusual, if the respective sense(s) would be analysed, evaluated and responded to, as usually in NT cases, by specific areas of the brain. But since autistic brains are thought to analyse, evaluate and respond through the entire cerebral cortex to all/any stimuli (this being the very reason of sensory overload), an overlapping of sensory receptor(s) and stimulus happens, with the stimulus remaining nevertheless auxiliary in achieving the desired stimulation, with the brain and its response as the ultimate goal. Let me exemplify.

You sit in your car, and start drumming on your steering wheel, knee, door armrest, etc. But this is not your usual drumming on your favourite tune, or unconsciously fidgeting with your fingers while looking at the red light. No, it’s none of these, but your well known, always the same rhythmic sequence, the perfect product of your autistic brain’s systemising function, which combines not only the same audible rhythm, but the sensory impulses received by the same areas of your fingers’ skin from the soft, always the same areas of the wheel, the soft rotating movement of your wrists, dwelling always on the same areas of your legs, while your vision has switched to enhanced peripheral vision, seeing the beginning and the end of your journey, your next WP post and the irregular helix of steam arising from your next coffee, just to name a few…

Having said that, I hope I’ve answered any unasked question about “autistic fidgeting”, which yes, it is certainly possible, but in my opinion never to be mistaken for stimming.

Stimming is like the magnificent wing flapping of a hummingbird, in which all its neurobiology is implicated, which defines its entire being.

What about self-harmful, injurious repetitive actions, one may ask?

According to Lorna Wing (The Autistic Spectrum, New Updated Edition, p.45, 1996), a self-injurious repetitive action such as self-biting, head-banging, etc, “more often […] is a response to distress, anger or frustration […] but self-injury can be a repetitive habit in someone who has no other way of occupying themselves”.

In light of the above, having also witnessed this type of behaviour in non-autistic children and adults with congenital or acquired learning disabilities or limitations, also in animals confined to very small places, I would suggest that such behaviour isn’t necessarily autistic, but a physiological response to pathological stimuli, and therefore shouldn’t be necessarily considered stimming, except in cases of severe learning disabilities when according to Wing “self-injury can be[come] a repetitive habit in someone who has no other way of occupying themselves”. In such cases, protective gear and pharmacotherapy are considered as means of ensuring that the individuals themselves and their environment are protected as much as possible from harm, while maintaining the highest achievable degree of dignity and autonomy.

Asperger’s, the desperately beautiful trap of my soul…

I feel again and again, like my soul is trapped in a desperately, beautiful way in this song…

According to the “world”, I live with Asperger’s; the world with which I feel like communicating the way this transcendent performance does, in a desperate attempt to make myself understood without being hurt, again and again, silently attempting to contort my hand-branches into what I can’t ever say, but I would so much want “the world” to understand…

All the small greatness of a perpetual child, condemned to never grow older than the sap flowing behind the skin-bark “the world” can see.

If I have ever had a mirrored image, it’s this…

Defiantly refusing to hate my soul’s small room, never willing to leave the silent perfection of my perfect loneliness, cleansing nevertheless every day the window meant for anyone to look through, hoping that one day someone shall notice my waving branches and the small fruit growing atop my roots…

Please, if anyone enters, sit silently on my bed and dream my thoughts together with me, touch me not beyond your eyes, as I’ve left myself nearly naked hoping you’d understand what I can’t say.

And when you leave, cover me; don’t let ageing leaves ever scratch the silent story my bare skin would dream with you tomorrow, if you might return…

I’m forever grateful to Idan Raichel, for bringing together “me”, with my “self” in this performance, so I can ‘feel’ at least sometimes, myself