Autism for me

Autism is often talked about in very impersonal, objective terms, in arcane and confusing language that is overly medical and academic.

But to better grasp autism you have to ask the person with autism what it’s like for them. Autism is not an abstract entity but a lived experience, and no two lived experiences are alike; the following is only my version of what autism ”is for me” day to day.

Autism is:

Constant alertness, bombardment, too much information, too much noise, too many demands and not enough bandwidth to process it all, resulting in a never ending anxiety.

Autism is:

Fingers in ears when sleeping, headphones and predictable white noise (to block out unsolicited  noise) when reading, total, exhausting focus with the prospect of being distracted by noise at any random instant a constant menace.

Autism is:

This book needs to be read this morning, will it be noisy and will this interfere with the plan?

Autism is:

A shooting jolt in the stomach as footsteps are heard, thump thump, above, then silence…but when will the next noise come, and, oh no, I need to whisper this sentence out emphatically again in order to wrench the meaning out of the silent text.

Autism is:

Following passions assiduously and independently on my own terms, doing my own thing, living my own life, regular patterns and order to be found in food, cooking, and reading, curiosity and a never ending  need to accrue new information about the world.

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Autism is:

Distraction, lack of focus caused by noise competing for attention, irritability and anger when routines are interrupted and disorder and chaos replace beauty and peace; needing to know what is happening in detail, needing to go to bed at the same time every night, and fear that tiredness will render me completely incompetent, thereby affecting my intellect and ability to learn and function.

Autism is:

Fixation on the plan, wariness of straying outside my comfort zone and existing patterns of living, yet a paradoxical willingness to collect new experiences (food, books) that are the subject of an intense collecting obsession.

Autism is:

Obsession and total pursuit of an idea, thing or image, over and over and over again.

Autism is:

Procrastination, zoning out, aimless slumping in a chair not knowing what to do and where to go or how to live.

Autism is:

Excitement in the face of perfection, tasty food, a good book completed or a challenge overcome.

Autism is:

Feeling like a child in an adult’s body, running and jumping with abandon, overcome with energy that is so intense it’s  bordering on uncomfortable.

Autism is:

Pacing on toes round the kitchen, flapping arms and hands, unconscious random giggles when alone and undisturbed.

Autism is:

Mess, disorganised papers that are screaming out to be put away, but the energy has already been spent following interests or important routines.

Autism is:

Social confusion, disconnection and isolation; difficulty visualizing verbal explanations and taking in information at the pace people expect;  socializing (from reciprocal conversation to listening) is unnatural and arduous, yet important to avoid the feeling of not existing and having no value.

Autism is:

Difficulty empathising or delayed empathising. Not understanding the thoughts and feelings of others, at least not emotionally, and feeling bad about this because I want to care but the feelings don’t come on cue, and sometimes never come at all; feeling out of my depth when people cry and difficulty dealing with emotions, my own and that of others; avoiding peoples’ emotions as much as possible; repressing or ignoring feelings as not relevant; sudden bursts of angry energy that disappear as fast as they come; intellectualising everything.

Autism is:

Copying others, learning how to socialize via intense effort and conscious application, appearing to socialize well yet no one sees the furious paddling beneath the mask.

Autism is:

Often invisible to the casual beholder (well, if they don’t live with me, that is!) but all too visible to me, 24 hours of the day; appearing to be no different to anyone else, yet experiencing the world in a very different way.

Autism is:

Trying to fit in by conforming to the social rules, but stumbling around like someone trying to fit a key into a lock in the dark.

Autism is:

Attempting to socialise while feeling tense and as though I am on a precarious ledge that could give way at any moment, exposing my vulnerabilities.

Autism is:

Those eyes are boring into my soul, I can’t think, the glacial balls are too distracting, need to look down to focus on the words and formulate my response, but they might think I am being rude and I don’t want  to be judged so  I try and look at them anyway.

Autism  is:

Feeling vulnerable in a world that does not understand you and that constantly misinterprets your actions; a fear of being disbelieved, trivialised, overlooked and excluded.

Autism is:

Not mild but a total existence that affects every element of my life, for good and bad.

Autism is:

Tiredness, disrupted sleep, aches and pains.

Autism is:

What the heck are emotions? one moment and then complete involuntary explosions the next, followed by self-recriminations and endless rumination.

Autism is:

Slow processing, an intelligence that is not always accessible, meanings lost, facts forgotten, and consequent feelings of stupidity and failure.

Autism is:

Endless words stored in colour, such as aleatory, atrabilious (can’t believe I remembered that one, and spelled it right too, after only seeing it written this morning); a ordered inner universe of coloured months, days, numbers and years, a need to categorise, collect, try out, improve, experience, and control as many aspects of the world as possible, and to never stop trying to succeed.

 

 

 

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