this is a text for people who have just realized, or are beginning to wonder that they might be autistic. i will try to give you some keywords and language to describe and understand your experiences.
this will not be about pursuing a diagnosis or getting external help. these can also be very important steps, but in this text i will only try to shed some light on experiences that are often silenced by the neurotypical mainstream.
autistic burnout
being autistic is as wonderful as it is hard.
the fact that you are just now considering that you might be autistic can mean that you are experiencing what we call autistic burnout. it can occur together with or independent from a classical burnout. autistic burnout often includes the loss of abilities and increased visibility of autistic traits.
the long text “help, i am getting more autistic” explains many things that can lead to showing more autistic traits, like increased outside expectations, stress from other sources, autistic burnout and others.
communication
being autistic means that we struggle with neurotypical communication, both verbal and nonverbal.
we may avoid eye contact, we may not be able to read faces. we may not be able to understand or use facial expressions, body language or tone of voice in the same way neurotypical people do.
many of us use scripts to make communication easier. that means we have specific words or sentences that we say in specific situations. like saying “good morning” to your coworkers, we might have a script for “what to say when people ask me how i am doing” or “how to explain my health problems to doctors” or “how to react when someone is feeling scared”. some of us come up with scripts on their own, others use phrases they have heard or read somewhere else (this is also called echolalia).
we may use autistic body language that is very different from neurotypical body language. we may react very differently to any stimuli. many of us laugh or smile when we are distressed. many of us move rapidly when we are happy. these are just some examples – we are all wonderfully different.
our social interactions are markedly different from non-autistic social interactions. many of us prefer to be direct and honest over hiding our points in words that mean something else. we often use parallel conversations were 2 or more people talk to each other, but everyone is talking about something completely different.
social difficulties
those of us who are usually verbal may experience “going nonverbal”, that means losing the ability to speak for an amount of time. many of us struggle at keeping up conversations, finding the right words in the right time and getting other people to understand us.
many of us have a hard time trying to understand concepts that are important to neurotypicals. this can include problems with understanding abstract words or lacking the ability to understand other people’s intentions.
many of us have prosopagnosia, that means being faceblind, which means we cannot remember and recognize faces.
many of us have alexithymia, that means we cannot identify and name our emotions, even though we feel them very clearly.
our social difficulties often makes us susceptible to manipulation and deception. when we try to understand and mimic social rules, we are not always successful.
sensory experiences
many of us have difficulties with sensory processing. we may get overwhelmed by loud noises or bright lights. touch may be very unpleasant or painful to us. we may have sensory hyper- or hyposensitivities. we might struggle to remember images or sounds. we might have trouble interpreting what we are seeing or hearing, even if we do not have vision or hearing impairments. (another keyword is “auditory processing disorder”.)
we might be very sensitive to taste and smell – or we might need intense tastes and smells to feel comfortable.
many of us experience synaesthesia, that means we associate different senses with each other. numbers may have colours, sounds may have shapes or feelings may have directions.
stimming
many of us crave controlled sensory input. the act of giving ourselves this controlled sensory stimulation is called stimming. stimming can be thousands of activities – it can be rocking, pacing, clapping, fidgeting, chewing, touching or looking at good things, there are acoustic stims, vestibular stims, taste and smell and pressure stims, the possibilities are endless! stimming is wonderful and natural.
thought organization
we seem to have a different kind of thought process than non-autistic people do, but there are huge differences between the ways autistic people think as well! some of us think mostly visually. others cannot think in images at all. some of us think in words or echolalia, others don’t use words in their mind. there’s an amazing variety in the ways our minds work.
many of us have executive dysfunction. it can be hard for us to do even simple tasks. we may have to re-learn the same thing over and over again. we may get overwhelmed by tasks that are too big for us. we may have trouble figuring out the single steps that make up a complex task. we may struggle with initiating tasks or switching tasks.
on the other hand, many of us experience hyperfocus, where we just sink into whatever we are doing, completely forgetting about the outside world for hours on end.
routines
one of the ways we deal with both sensory processing difficulties and executive functioning problems are routines. having routines means doing the same thing in the same way always, it means having a reliable reference and a frame that gives our lives shape.
familiar surroundings and reliable planning are important for many of us. we may plan ahead meticulously. many of us react very strongly to change in routines or plans. having things and surroundings stay the same can be very important for our functioning and wellbeing.
special interests
being autistic often also means having one or more special interests. special interests are things that we get very excited about. we collect information on our special interest, or we have the need to do it as much as possible. it’s more than just a hobby – it’s a special and wonderful hobby. we may have the same special interest for all our lives, or we may have many different special interests, each only lasting a few days. we may find ever new things or come back to old favourites or we might be simply too tired to have a special interest again.
emotions and empathy
some of us do not experience empathy at all, others are hyper-empathic, others experience it only partially. empathy has many different aspects: you can “feel what others feel”, you can try to “put yourself in their shoes” to imagine what you would feel in their situation, you can react to their emotions with your own emotional response. however, all of this requires you to read their emotional state first, which can be very hard for us.
one of the misconceptions about autism is that we are supposedly “emotionless”. the truth is, many of us are extremely sensitive. we can develop ptsd from experiences that others would not even classify as traumatic.
another myth is that we are unable to lie or understand irony and sarcasm at all. while it is true that we often struggle with detecting irony and sarcasm, most of us can still understand the concept and use it.
it is also untrue that we lack “theory of mind”. we are well aware that other people have different thoughts than we do, which is exactly the reason why it is hard for us to guess what other people may be thinking or feeling.
stress reactions
many of us respond to sensory overload, emotional overload, routine changes or other stress factors with shutdowns or meltdowns.
meltdowns are an explosive stress reaction that can range anywhere from “i am upset” to “i am endangering myself and/or others” or “i am destroying objects”. meltdowns can be internalised or externalised.
shutdowns is when we go silent and become very calm. we may freeze or drop on the floor. we may dissociate.
sensory overload, shutdowns and meltdowns can happen several times per day or once every couple of years. severity and frequency can change for any given person over the cause of their life.
there is no one way to be autistic
autism is just the way our brains are wired. we still have unique personalities.
we come in all shapes and sizes, in all genders and sexual orientations, we exist in all races and cultures. we don’t grow out of autism. we are autistic from before we are born and stay autistic for all our lives.
our autistic traits are also influenced by other neurodivergences. personality disorders, ptsd, adhd, ocd, schizophrenia, and everything else can influence the way we experience or display our autism.
it is important to recognize that there is no hierarchy between different “types” of autism. people who were diagnosed in childhood are not generally better or worse off than people who were never diagnosed. we experience different kinds of ableism: dehumanization and dismissiveness.
functioning labels – that is, labelling autistic people as “high functioning” or “low functioning” – harm everyone. they are being used to deny “high functioning” people the help they need and to deny “low functioning” people their independence and humanity.
while it is true that some of us need more support than others, this does not mean we “function” at a different level. this classification is based on ableist notions about what abilities a human being must have in order to be seen as fully human.
autistic people often have very asymmetric skill development. only very few of us have real splinter skills, but many of us are far better in some areas of competence than in others.
if it just so happens that the things we are bad at are the things required for everyday living, we may get labelled “low functioning” – regardless of what we are actually able to do.
autism is not a one dimensional condition. there are hundreds of things we can be very good or very bad at. some of us have intense sensory sensitivities, others have strong social difficulties, yet others cannot cope with the slightest change in their routine. some of us are very musical, others excel at maths and science, yet others prefer to play volleyball.
autistic culture and identity
autistic culture has been existing probably as long as any kind of human culture has, long before the term autism had been invented.
we have always been a part of society. with our contributions we enrich humanity. we are teachers, artists, engineers, nurses, cleaners, designers, professors, bus drivers, activists, politicians, parents, doctors or therapists. capitalism likes to exploit our special skills while at the same time refusing to meet our special needs.
we are friends, we are family members and neighbours, we care and we help and we work in our own ways. not everyone of us can work in a way that is rewarded financially.
while it is true that being autistic can be a severe disability, or that this anti-autistic society can be very disabling for us, many autistic communities are seeking to establish Autistic identity outside of pathologizing medical definitions.
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