People with Autism have been Autistic for their whole life.
^ This is not a perspective, but a fact.
Unlike anxiety, a mental health condition which is usually brought on by social/environmental factors and can therefore ‘come on’ at any point in a persons life, Autism is a biological condition (highly likely to be genetic), meaning that an individual with Autism, regardless of when they were diagnosed, were born Autistic. This can simultaneously be both a hard pill to swallow and a source of comfort for people who were diagnosed with Autism in adulthood.
Finally able to put a name to how they have spent their whole lives feeling (most notably ‘other’, ‘weird’, ‘different’)- a comfort, but, wishing that they knew sooner, so that they could’ve avoided spending their prior years- their whole childhood and adolescence- feeling ‘wrong’ for being different, (‘wrong’ but, never able to pinpoint the source of that, very humbling, I must say, feeling of ‘wrongness’/’otherness’)- an, understandably, hard pill to swallow…
Writing from personal experience, I didn’t realise that I had (/have) Autism, until 2019, aged 18, despite me having had it, like everyone with Autism, my whole life…
How I came to realise that I’m Autistic…
I was in my first year of university when I received an email from my, then seminar tutor, asking me to go in early to see him before the seminar (which, obviously, sent me into a massive panic- social interaction, at the time attributed to anxiety, poPPinG oFf). To cut a long story short, I was told, when I went to see him (yes, I actually went!! My fear of authority overriding my fear of communication), to ‘pace myself’ more with my work (I was doing it as soon as I got it pretty much, spending hours and hours on it, missing sleep so that I could get it handed in as soon as possible because, deadlines loomed over me like a heavy weight strapped to my brain. Pathological Demand Avoidance? Until the work was finished, I couldn’t concentrate on anything else. I couldn’t allow myself to rest until I knew everything was done)… I was told that, whilst it was great that I was so motivated and working so hard, if I carried on working at the pace that I was working at, I’d end up ‘burning out’- ‘just something to bear in mind.’ And then, just before I left, he told me that his daughter had Autism too, and that there was support for me if I needed it. Wanting to be offended, to ‘laugh it off’- ‘I don’t have Autism’, except, I wasn’t (offended), I didn’t (laugh it off), I do (have Autism)… The latter (having Autism) being blatantly obvious. It’s been in plain sight all along…
When I was in primary school, it was suggested to my Mum that I might be Autistic- I used to spend my days in nursery lining dolls up instead of playing with them like all the other kids. It was never looked into any further though, because, my mum didn’t want me to be labelled as being different, which I get, we have come a long way in terms of anti discrimination and inclusivity but, in the early noughties, there was a lot more stigma around things like Autism, especially in girls for which it was, (still is, in some cases), seen as a ‘rarity.’ A rarity not because they- Autistic girls- don’t exist, but because women and girls have been largely overlooked, neglected even, by professionals in the field of Autism…
Autism in Women
Discrepancies in how we perceive (if we perceive them at all) girls/women with Autism…
When people think of a child with Autism, most will conjure up the stereotypical (for boys) image of a Thomas the Tank Engine obsessed kid who can’t concentrate in school and is, more often than not, disruptive and prone to misbehaving. Whilst there will be some girls who do also display these symptoms, the majority of girls will not. This means that their struggles tend to be dismissed, either all together (they are essentially ignored and just ‘left to get on with it’), or they are attributed to being as a result of another condition, depression and anxiety perhaps (as with me) and offhandedly given a prescription for sertraline… This subsequently results in so many girls and women missing out on the help and support they need in what, to them, ultimately feels like some sort of ‘alien’ planet- a world designed for the neurotypical, for which, they are not… This can lead to Autistic girls growing up being made to feel as though there is something ‘wrong’ with them for not being able to function in the way that their friends in school can, for example…
Writing from personal experience, I spent my whole childhood and adolescence, prior to (*finally*) realising that I have Autism, feeling like I was constantly on the outside looking in… Misunderstood? Maybe. A ‘misfit’, certainly. I was just never able to understand why I always felt so ‘other’, so different from everyone else… Until the Autism (self) diagnosis, and then it all made sense… Of course I felt like I was ‘on the outside looking in…’ I was stuck trying to make sense of a world that is entirely nonsensical for the neurodiverse. A wholly futile attempt at fitting in when that was never going to happen. I have always felt different because I AM different…
You see, not only am I Autistic, but I am also a woman, both of which come with their own set of challenges… Navigating a world designed for neurotypical males, it was always going to be… interesting? Like trying to fit an apple into a slot machine, if you smash through the machine, the apple will fit but, you’ll be tired after forcing it to fit in somewhere in which it doesn’t really belong… With so much of your time and energy spent, you probably won’t feel like playing on the slot machine after all that anyway, unlike men (the coins) who effortlessly fit, who can play the game because they have all their energy reserved solely for the purpose of playing the game… A random analogy but, hopefully it highlights the struggle that women, not least Autistic women, have to go through on a daily basis, simply to ‘play the game’ that is life… It gets exhausting trying to fit in somewhere you don’t belong and, sometimes, you don’t have the strength to smash through the machine, so you remain on the outside looking in, wanting to play, but being unable to…
Other struggles that we go through as Autistic women include…
(The quoted extracts are from Rudy Simone’s book, ‘Aspergirls’).
⦁ Social Awkwardness
Feeling like a ‘black sheep’- awkward and uncomfortable and just ‘weird’, in school, I never identified with my female classmates, peers, and certainly not media representations of what a female is and should be…
Temperamental, hypersensitive, constantly overloaded and prone to meltdowns, nor do I relate to people who have had a happy childhood.
‘I don’t begrudge them, I envy them.’
Unlike other people who seem to be on a fairly solid ground in social situations, I’m on a tightrope and it doesn’t take much for me to lose my balance. Not knowing what to say and having self-doubt, I have a ‘deer in the headlights’ reaction to any and all social contact. There are plenty of times when my brain freezes and I don’t figure out what to say for a few days or so afterwards- my ability to continue the conversation just shuts down.
‘I don’t have any words to say unless I’m asked a specific question; and even then it’s a challenge not to stutter. I find the reciprocity of conversation to be tiring and hard to follow.’
Characterised by lots of ‘botched interactions’ and a crippling lack of confidence, it leads to social avoidance/withdrawal, selective mutism, difficulty maintaining eye contact, and constant fidgeting.
‘Everyone else seems to be so relaxed and to know what to say to each other, like they’ve each been given a script and I am the only one who has to adlib. I feel uncomfortable, sense that I don’t fit in. I might feel a little hostility coming from someone. Discomfort intensifies and then a paralysis- my thoughts too freeze- I think over and over ‘They don’t like me.’ My own thoughts spiral out of control in a downward trajectory. As people converse with each other, my lack of participation, instead of helping me to become invisible, which is what I want, only makes me stand out like a beacon of social ineptitude.’
⦁ Lack of identity/Self-confidence
‘Impressionable’, I have a ‘changeable personality’/a ‘chameleon’ nature , either based on my current role models, or changing interests.
Lacking any clear sense of self, I tend to feel flawed and want to change myself to be accepted.
I feel incapable of handling day-to-day, ordinary experiences that other people seem to manage just fine. Whether that means holding down a job or conversation, growing friendships, etc, I often felt(/feel) alienated- in terms of gender, culture… species?
As such, I try extra hard to please- feeling that I should be doing better, that I should be able to handle a job/relationship/life/whatever, better than I am…
⦁ Fluid Gender Identity
Disinterested in society’s expectations at what being female means, I ‘march to my own drum.’
‘The very first record I bought was Space Oddity by David Bowie. I related to his character, his persona.’
‘Androgynous’, in mannerisms, behaviour and, mostly, in essence.
‘In high school, girls treated me like I was something else, not boy, not girl.’
⦁ Preference for writing over talking…
I express myself better in writing than in conversation…
I can read books and understand anything written better than most (not to brag), but I lack any reciprocal conversation skills…
I remain solitary much of the time, because, I can’t spend an hour, or one minute in some cases, in conversation without getting a migraine, or having a meltdown.
‘Highly intelligent, yet sometimes can be slow to comprehend due to sensory and cognitive processing issues. Will not do well with verbal instruction- needs to write down.’
⦁ Emotional Sensitivity
In some cases, my senses are heightened- I sense things/pick up ‘vibes’ from people… This is a large part of why I have difficulty getting along with others. If an interaction has even the slightest bit of hostility in it/if I believe that I’m being looked at with an unfriendly, intimidating, or threatening eye, I fold, ‘fight-or-flight’ mode activated…
‘I want to be accepted for who I am, but, it’s difficult to be myself around others when I can’t relax. Adrenalin kicks in and I want to run away.’
⦁ Emotional Naivety
‘She may seem quite mature in many ways but she is autistic and she will be fragile and childlike in others.’
Autistic people have an innocence, a childlike quality, regardless of age or education. This is very obvious when we are anxious or upset.
We may act, feel, and often appear younger than our chronological age.
Unable to cultivate or maintain ‘appropriate peer relationships’, when I was younger, I was attracted to older people because of my ‘intellectual maturity’, but, as I’ve gotten older, I feel more comfortable with younger people because I don’t feel mature emotionally…
⦁ Triggers
There are triggers EVERYWHERE, waiting to set me off, to steal my peace and sabotage my calm. The tiniest, most seemingly insignificant of things that other people barely notice/typical sounds that others can filter out, they drive me to distraction- loud social situations, perfume, background noise, when someone is fiddling, babies crying, sirens, fire alarms, fireworks, yelling/arguing, if two people talk to me at once, too many items on shelves, wind, cold… All examples of sensory triggers, they are real and strong aversions, not just petty annoyances.
Having so many triggers can make navigating friendships/relationships/dating* difficult…
‘Is this new person gonna think I’m a freak if a siren goes off and I have to cover my ears and flee?’ I have to worry about their reaction to the more extreme obvious signs of AS, such as mutism and meltdowns, and the more subtle displays such as bluntness… It makes it difficult to go out and have fun when I know that if I am just myself (whoever that is, as below), people will think that I’m strange. Fear of ridicule being just one more thing that keeps me isolated…
‘Society prizes confidence and appearance and I just don’t seem very confident…’
*(Fortunately, all it really takes is one person to ‘get us.’ Another Aspie perhaps, or at least someone eccentric. Someone who knows we’re quirky and likes us because of it, not in spite of it. And, someone whom we can trust not to hold our traits against us)…
⦁ ‘Meltdowns’
In terms of what happens when I experience sensory or emotional overload, it can leave me feeling sick and depleted. Sometimes I get migraines, stomach pain, nausea, dizziness, exhaustion, sometimes I have meltdowns, and sometimes I just stim* (all of which causes lasting embarrassment in most cases)…
*(‘Stimming’ is simply something we do to soothe ourselves when we are upset, anxious, overloaded, or in pain; to release unpleasant feelings or energy, e.g., finger flicking, thumb twiddling, nail biting, etc).
‘In public, if I am getting overwhelmed I will jiggle my leg or tap my fingers- small stims which are probably somewhat annoying to others, but don’t mark me as a complete loony.’
The biggest source of ‘stimming’ for me is related to my fear of change. For example, I stim when I have to get up early and go somewhere new- not knowing exactly where it is/what to expect. I stim when I have to go out and interact with !!actual people!! I stim thinking about any stressful activity I might have to engage in (though, the source of my stress often, if not always, lies in how I am looking at something/how I am perceiving a situation, not what I am looking at)…
‘I feel angry and agitated. I’m not breathing right. When I speak, if I can speak, I may be sarcastic and scornful. I might say things that I don’t mean but, at the time, they seem true. I cannot see any other perspective but my own. I might not even be able to tell it’s coming until right before. Then clouds gather in my head. It is unleashed very suddenly and I might have little or no control over it.’
We might look ‘normal’ and our meltdowns might seem completely irrational but, telling a person with Asperger’s to just ‘get on with it’, is like telling a person in a wheelchair to take the stairs if they want to get to the second floor…
‘Society expects us to handle things well based on our intelligence and appearance of normality. We often demand the same of ourselves. Even if we can handle it academically or intellectually, it doesn’t mean that we can handle it physically or emotionally. We need extra time, extra patience, and more sensitivity than most people.’
⦁ Need for control
A lot of the triggers above, perhaps all of them, in fact, exist only in relation to my lack of control over them.
‘If I’m running the lawnmower and making a racket, that is okay, but if my neighbour is, that’s a different story. It means that I’m prepared for it.’
I can handle an onslaught of sound for a time, but preferably a time, place and sound of my choosing… Hence the necessity of having a routine, (as below), without which there is chaos and the unexpected.
The need for ritual and routine is one way of controlling the world. ‘Stress management’, sticking to routines acts like a security blanket; it means that I know what to expect, where to expect it, and who to expect it from. These things make me feel safe on an otherwise precarious planet…
If I’m side-tracked from my rituals and routines, I might just be slightly annoyed or, I might have a full-blown meltdown. Many of my meltdowns are caused from a change in routine. I cannot handle change.
‘Autistic people need very clear lines drawn. If any plan is waived, they weave off the road.’
Having so many rules and so much discipline and rigidity in certain habits may contradict my seeming ‘unconventionality.’ Whilst yes, I do sometimes crave people, human contact, and even spontaneity, most of the time, I just want to engage in my (probably very boring but comforting, for me) rituals- writing, walking, reading…
⦁ Information OBSESSED
I have a thirst for knowledge. I just want to fill my mind with as much information as possible. Information gives my thoughts an anchor and it is something that I can control.
‘When it comes to educational pursuits and intellectual ability, I think AS is a wonderful gift. I can hyperfocus.’
With a sense of urgency to learn and create, information fills a void, almost. A place to focus, information replaces confusion, which many of us experience in interactions with others.
‘I can research information in books but I cannot research people in everyday conversation. It is completely within my control how much information I want to let in, unlike dealing with people, who are unpredictable and uncontrollable.’
⦁ Introverted
I stay most days on my own with my own thoughts as I live more in my mind than in my body… It may be that I have nothing to say, or it may be that I am lost in my own thoughts.
I try to create my own world in which to do my own thing because, I struggle to find purpose and reason in the trappings of this noisy, chaotic, confusing world… And, I also just really love my alone time. I love not having my peace wrecked by nonsensical conversation and meaningless activity.
‘Withdrawn, she can’t or won’t tell you what is going on with herself, so she may be struggling on her own.’
I sometimes worry that I’m a sociopath. I don’t seem to feel what others do. I lie and say I do, when I just feel numb.
⦁ Obsessive Behaviour
‘We have a marvellous ability to think about things in depth, continually, for long periods of time. In our hobbies, it’s called passion. At work or school, it’s called focus. But in our personal life, it’s called obsession.’
The rapacity with which I enjoy certain things and the passion they inspire in me is taken to a new level. When I am in ‘the zone’, I have a hard time with taking breaks, eating, drinking, getting fresh air- not knowing when to stop (or, in some cases, start- executive dysfunction)…
‘When engaged in my passion I lose all sense that there is anyone else on the planet or that time is passing. It is like another dimension. Nothing else matters. Once I get going on something, I often forget to eat, go out, have fun. Even going to work/school is an unwelcome interruption to our zone activity.
‘If you do not find work in one of your areas of obsession, you will probably be distracted, bored, depressed. We need our obsessions. They give our psyches an anchor, they give our thoughts ritual and routine which we know is extremely important.’
Because I have a strong thirst for knowledge, and a ‘chameleon’ nature, my areas of interest can change rapidly and dramatically… This can result in me looking for reasons to leave, burning bridges, and quitting before I fail (an Asperger speciality)…
My obsessions can also sometimes be people- I tend to put people on a pedestal.
⦁ Misdiagnoses
Many people with Asperger’s who have received diagnoses for other conditions throughout their lives, each time, felt their diagnosis only covered part of the picture, either because it was focusing on one aspect of Asperger’s (e.g. physical tics), or because the doctor was noticing the comorbid condition (e.g. bipolar depression), and not diagnosing them with what they were actually struggling with- Asperger’s…
Even with diagnosis though, it is often difficult to tell where AS ends and psychological problems begin, for, the symptoms and conditions massively overlap…
Conclusion
Autism is displayed in ways that exist far beyond having an obsession with trains and a disposition to misbehave. It can be seen in the way that we try our hardest to melt into the background at social events so as not to draw attention to ourselves that might warrant conversation (and a literal meltdown)…
It can be seen in the way that we divert our eyes from side to floor to back again during the conversation we haven’t been able to avoid, doing so, not because we’re ‘rude’ or ‘ignorant’, but because eye contact feels like someone can see right through us into all the parts we want to keep hidden- all the ways that we think highlight our ‘wrongness’, ‘too muchness’, ‘not enoughness’- all the ways that we think prove that we are lacking.
Autism can be seen in a multitude of ways- some that make us feel really vulnerable and uncomfortable and make us want to scream at the sky, ‘why can’t I just be normal?!’, but all that, even if we can’t see it for ourselves, makes us who we are- sensitive (which isn’t always a bad thing- it makes us more patient with others because we know what it’s like to feel misunderstood and unheard), passion, sometimes the ability to not feel very much but, sometimes the ability to feel things so intensely that we feel like we could burst from it all- love, when we feel high on life. And, the ability to think about things intensely, too. To understand that there is far more to existence than we can comprehend as mere humans, to sense that the universe is looking after us, to trust in its ability to provide for us what we need in a world which is so hard to navigate…
And so, when you think about it like this ^, you realise that, despite the struggle and the longing to ‘fit’, actually? Autism is quite the gift…
(&, anyway, ‘Being normal is vastly overrated..’)
*mic drop*
And that’s on having ‘tism xo
!! Recommended reading: Aspergirls by Rudy Sim
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