Firstly and foremost, Autism isn’t code for “broken“. It never was, never will be. We’re not broken… It’s just that other people simply do not understand how we work.
So if that is true, then what is it?
There is a Myriad of Myths and Facts about being Autistic. And The main one to debunk right away, though, is that it’s a “disease” and “needs to be cured“.
Just don’t even think it.
Just. No.
It Isn’t A Disease(!!) – It’s not contagious, its not bacteria, no one can catch it, and it’s not going to kill you. And with nice people who care about helping us feel safe and free in a world we find difficult to understand, we can have quite nice lives, thank you very much. Autistic brains are… wired differently… ish. Well… That’s the most basic way of way saying it. without getting caught up in specifics, semantics, or complex neuroscience, and just about anything else… The bottom line being, we’re Human People and deserve as much respect, as much space, as much acceptance, as much freedom, as many opportunities as Everyone Else, And Without Exception.
Think of it as being Quite Similar as dumping someone with in a different country — without telling them what country they’re in, what language(s) are spoken, what the Culture or the Customs are, how things are done, what laws are, what are the acceptable forms of interaction, and so forth…
…Then Always Telling Them They’re “Broken“, “Disabled“, “Awful“, “Thick“, “Wrong“, and a myriad of other REALLY BAD Names & Adjectives… For not being able to understand how the people communicate, how the country is run, how social interaction is governed and used, what the basic ways of the country are… or how to be [their] “Normal“…
And if you really do want to be true to yourself, in this unfamiliar, overwhelming and strange environment, you shouldn’t have to be forced to be like everyone else — usually when you’re from another country, you use your own customs, likes & dislikes, mannerisms, language, food likes/dislikes, ways of eating, ways of dressing, etc… But When You’re Autistic, You’re Allowed No Such Freedoms, No Sense of Self, No Ability To Be Yourself, or Do Things Your Own Way — Not without being Ridiculed, Bullied, or Branded As Somehow “Wrong” or “Degenerate” in some manner or other.
The basis of ASD is in the Key Triad:
- Difficulty with Social Interaction
- Difficulty with Social Communication
- Difficulty in Imagination (not to be confused with being imaginative) — This Means being able to consider possibilities outside of our own knowledge —
- i.e. Someone cries out, “Imagine how I feel“… Well. No. I Really. Can’t. And Why would I when you can Just. Tell. Me…??
- Another is, “Imagine how it might have been if this hasn’t happened” … How and (importantly) Why?! It HAPPENED. So, why do we waste time on this?
From the National Autistic Society [UK]
Social Communication
Autistic people have difficulties with interpreting both verbal and non-verbal language like gestures or tone of voice. Many have a very literal understanding of language, and think people always mean exactly what they say. They may find it difficult to use or understand:
- facial expressions
- tone of voice
- jokes and sarcasm
Some may not speak, or have fairly limited speech. They will often understand more of what other people say to them than they are able to express, yet may struggle with vagueness or abstract concepts. Some autistic people benefit from using, or prefer to use, alternative means of communication, such as sign language or visual symbols. Some are able to communicate very effectively without speech.
Others have good language skills, but they may still find it hard to understand the expectations of others within conversations, perhaps repeating what the other person has just said (this is called echolalia) or talking at length about their own interests.
It often helps to speak in a clear, consistent way and to give autistic people time to process what has been said to them.
Social Interaction
This is Scary Stuff — to Autistic People, Neurotypical people act and speak really… strangely. They say things that aren’t logical, say things they don’t literally mean, or don’t even mean at all, and say what they think you want to hear instead of just what is truth and reality. You never know what they mean, or if they mean it, or if they’re saying something that might mean something else…
…It’s Distressing. Confusing. Frightening. Truth be told, I’m actually getting quite distressed even just writing about it…
Autistic people often have difficulty ‘reading’ other people – recognising or understanding others’ feelings and intentions – and expressing their own emotions. This can make it very hard for them to navigate the social world. They may:
- appear to be insensitive
- seek out time alone when overloaded by other people
- not seek comfort from other people
- appear to behave ‘strangely’ or in a way thought to be socially inappropriate.
Autistic people may find it hard to form friendships. Some may want to interact with other people and make friends, but may be unsure how to go about it.
Restricted and repetitive patterns of behaviours, activities or interests
Repetitive Behaviour & Routines
Everyone has these, not just Autistic People… Everyone always has Something — Maybe it’s “their” seat on the bus/train/Tube or metro, or they always go to That Starbucks for their Exact Caramel Late with extra shot & sugar on the way to work, or they wear their “lucky socks” for interviews or their football games.
But the difference is, to Autistic people, they’re not only “Just Quirks” —They’re A Lifeline, and one that fragments your brain and destroys your insides the moment that it doesn’t All Go Just Right… I can’t even really say myself Just Quite Why… But it Does. And That’s All That Matters…
And worse of all — when it doesn’t all go Routinely, then it becomes Change… And don’t even get me started with “Change“…
I HATEIt… It’s Every Kind of I. Don’t. Know there could be, and any Unknown Quantity is Absolutely UNacceptable in my own eyes.
When I am Forcedinto Dealing With things that I am unfamiliar with; that there is something I am going to have to do/deal with/experience/suffer; I Research It TO DEATH. If it’s Doing Something, or Going Somewhere, I Rehearse It All, everything, in my head, as much as I can, to the smallest detail, hundreds of times if need be. I go through it over and over again with someone, if I possibly can. I try and make whatever it is that’s changing about as familiar as possible to me before it happens. If I Don’t Get That Chance… The Overwhelming Panic shuts down Everything.
Even if its a Good Thing, its still the Same — It’s taken over 8 years for me to even think that I want to build a new computer, upgrading the last one I built, which is almost ancient. And that’s basically because I Have To. Despite me loving all tech, especially anything New that comes out. Change Is Horrifying
The world can seem a very unpredictable and confusing place to autistic people, who often prefer to have a daily routine so that they know what is going to happen every day. They may want to always travel the same way to and from school or work, or eat exactly the same food for breakfast.
The use of rules can also be important. It may be difficult for an autistic person to take a different approach to something once they have been taught the ‘right’ way to do it. People on the autism spectrum may not be comfortable with the idea of change, but may be able to cope better if they can prepare for changes in advance.
Highly-Focused Interests
Many autistic people have intense and highly-focused interests, often from a fairly young age. These can change over time or be lifelong, and can be anything from art or music, to trains or computers. An interest may sometimes be unusual. One autistic person loved collecting rubbish, for example. With encouragement, the person developed an interest in recycling and the environment.
Many channel their interest into studying, paid work, volunteering, or other meaningful occupation. Autistic people often report that the pursuit of such interests is fundamental to their wellbeing and happiness.
Sensory Sensitivity
This is Very Not Fun — Having to be inundated with excessive noises, overwhelming smells, migraine-inducing lights, things that touch your skin and make you want to scream, and pushed to eat foods that have so much taste it makes you either want to, or actually, throw up… It’s. Not. Fun.
It’s Very Frightening. Extremely Overwhelming. Makes you feel like you’re being drowned in it, suffocated in it, buried in it… And to make it worse, it’s something you can’t help, you can’t stop, you can’t change… This Is Just What & Who You Are… Part of your own Blueprints, like your eye colour or ethnicity. Yet… Other People Seem To Imagine You Somehow Can… They. BLAME. YOU… And Expects You To Magic It Away — Instead of Maybe Thinking THEYCOULD “Magic” It Away For You, by Accepting it and doing something to ease up whatever it is that is OVERWHELMING….
Turn down the lights or head for shadow; close the door if your cooking something that smells a lot; let us eat our favourite food and Accept We Like It, help us wear clothes that are nice to our skin & senses, take us away from noisy places (or let us wear noise-reduction headphones) or speak lower, or remove the noise, like turn down the TV/Music… It CanBe That Simple, Sometimes.
Autistic people may also experience over- or under-sensitivity to sounds, touch, tastes, smells, light, colours, temperatures or pain. For example, they may find certain background sounds, which other people ignore or block out, unbearably loud or distracting.
This can cause anxiety or even physical pain. Or they may be fascinated by lights or spinning objects.
We are not all the same: Just like everyone else, we have our own individuality, so ASD varies between every single person. We will each have out very own set of quirks, abilities, and difficulties… Just like everybody else.
Ours are just different.
Our rules, the ones that make sense to us, do not make sense to you. However, it is insisted upon that ASD people always play to “neurotypical” rules… which sometimes seems a little unfair. Meeting somewhere in the middle would be much more beneficial to both sides.
Don’t just expect ASD people to understand they neurotypical world and be the ones ones compromising. The quid-pro-quo should be others learning our ways, too. We want to keep our own individuality, just as you do.
How common is autism?
Autism is much more common than most people think. There are around 700,000 people in the UK living with autism – that’s more than 1 in 100. People from all nationalities and cultural, religious and social backgrounds can be autistic, although it appears to affect more men than women.
How do autistic people see the world?
Some autistic people say the world feels overwhelming and this can cause them considerable anxiety.
In particular, understanding and relating to other people, and taking part in everyday family, school, work and social life, can be harder. Other people appear to know, intuitively, how to communicate and interact with each other, yet can also struggle to build rapport with autistic people.
Autistic people may wonder why they are ‘different’ and feel their social differences mean people don’t understand them.
Just accept us, love us for who we are, strange quirks and all. I know it’s possible, I’ve experienced it, where I’m accepted and cared about by others. Where they help me navigate the world, explain things to me, and make things easier. When the world feels like a better place, because the people around you help you feel safe and supported, you can be even more than you – or anyone else – thought you could be.
Some of us are able to overcome the fear and engage better. Some of us may not wish to engage as it is too stressful. Others may simply need you to talk and interact on a level they understand.
If we are engaged in our favourite activity, perhaps it might be OK to ask if you can join in, or ask questions. We generally do like talking about our favourite things.
Just like everybody else, we want to be our version of happy, even if it’s not understood. It might be left to indulge in our passions, or even being allowed to do it as a job. It could simply to feel safe and accepted. It could be anything – like I said, we’re all different.
To help engage with the world, and its strange rules and customs, it would be helpful if it was all explained, in a way that is easily understood. The unexplained is frightening to everyone. When frightened and distressed, it can be an agonising anguish, where you want nothing more but to have it taken away for you – and this intensity of terror cannot seem to be understood by “neurotypicals”.
It is this intensity that causes the brain to completely disengage into a huge panic attack that becomes a Meltdown.
Now, in this situation we are Absolutely NOT having a “tantrum”, or “being difficult”. We are in the most painful and confusing distress a person could possibly ever be in. There is No Control. There is No Choice.
There is no world outside this Pure Terror.
And it feels like there is No Way Back From There, either…
Some lash out or bite, where others might self-harm. We are not trying to be “violent”, we are now nothing more than like a panicked animal doing their best to escape the most horrific of situations. Touch can be excruciating, sound can become muffled or unheard in your ears, and nothing is “OK” as your world divides, collides, and disintegrates.
Compassion, patience, not taking it personally, and kindness are big, big tools to have. Those key points can make what seems like a never-ending drowning in the worst and darkest storm, a buoy to cling to or land to swim towards.
Simple words, simple questions, calming and soothing songs or toys or gentle words can make a huge difference. Particularly when we start to “come round” – and there’s a good chance they will know or remember nothing of the episode at all. I never do… It’s more like when you’re swimming out of a nightmare when you’re alarm clock is going off in the morning, and you can’t remember the dream. I am scared, confused and unaware of what’s going on when mine finally is soothed away. I also don’t know what to do, so a few simple instructions are always helpful too, with soothing words and a favourite cuddly toy (or my dog!) to hug.
The ASD life is not easy or perfect, but then nobody’s life is. It’s the same journey you’re taking as everyone else, just on a different path. And different doesn’t mean wrong. It simply means different. A path you should walk with pride… because making this journey is certainly something to be very proud of.
