So, do you really want to know what it's like?
Updated: Jul 21, 2019
Many people still don't understand what autism is, and who can blame them? The symptoms, challenges and talents of people on the spectrum are so varying, you'd almost think we're human beings.
Jokes aside, autism is often seen as one of two extremes. You're either completely dependent and shut down from the outside world, or, you have a secret super power and classify as a savant.
While this is the case with some, the majority on the autism spectrum cannot identify with either of these extremes. Autism can occur in any functioning adult, regardless of age, gender and race, and for some of us, most of us perhaps, you will never notice it's there.
Why? Because we hide it!
The concept of autism is trapped in a world of ableist language. (Psychological) terms such as 'caught up in their own world', 'a lack of social skills' or 'narrow interests' pull autism towards the negative without taking notion of the true experience that underlies these symptoms. Without ever seeing the suffering.
As I have stated before:
Autism is - in my mind - associated with affliction only because we live in a world that keeps denying us the things we need to thrive.
And what we need to thrive is:
- Understanding - not judgement.
- Acceptance - instead of efforts to change, improve or, god forbid, cure us.
- Assistance and care - instead of being expected to function just like any neurotypical would in a world overloaded with stimuli. We can't and we won't. That doesn't make us less, it makes us different.
I would like to demonstrate to you how autism affects a person like me (paired with ADHD inattentive). I'm no savante and I do not need round the clock care. I'm sometimes told I don't come across as autistic or that I must be 'high functioning', whatever that means.
Now that we're on the subject, let's shelve the concept of 'high functioning' or 'low functioning' immediately, shall we?
For one, autism is autism. Let's please detach that from one's intelligence, co-occuring mental conditions and physical health. Second, autism affects me, someone who has a family and a job, just as much as someone who is unable to function because of co-occuring conditions. The fact that I know how to mask my inabilities from the outside world, does not mean that I am less touched by autism.
Allow me to take you with me (figuratively speaking) just to clarify for you, how autism can affect a simple affair. Let's go to a birthday party, doesn't matter whom's, and imagine yourself in the shoes of an adult with autism who functions relatively well. Here we go:
With a semblance of happy anticipation, you ring the doorbell of your friend's house. You haven't seen this friend in a while and you're happy to be able to attend her birthday. You know how important this can be, so you're glad to be able to give back. When the door opens, you are greeted by eager eyes, a loud 'Hey!' and a warm hug. Your friend's reaction seems to amplify your own happiness and jitteriness and you feel a flutter of butterflies rising up from your stomach to your chest. You clench your fingers, tighten the muscles in your shoulders and do a little 'happy-skip' that you cannot suppress because you're excited to finally be able to attend. After all, you've more often than not had to cancel because life in general is just so overwhelming at times.
You really feel the urge to wave your arms in the air, however, as experience has taught you, you will need to conceal that urge knowing you'll be labeled as weird and stared at. So, internally, you tell yourself to just calm down. Your friend speaks the words of welcome you can expect in this social situation which is great because then you know what to say without having to give it much thought. The eye-contact with your friend is starting to become a distraction from the conversation she's started with you, so you decide to avert them to enable yourself to listen more closely. You notice your breathing is a little cramped, so you exhale and try to relax.
All is well.
You walk in. Some guests have already arrived, there's a colourful
birthday cake on the table and people are chatting away all around you. You take a seat and watch the scene of people around you in an attempt to process who is who and who sits where.
Another friend comes is. You have known each other for some time and you're happy to see someone familiar in this crowd. But then you notice the sparkle is missing from her eyes. She slouches a little, the tone of her skin seems a little pale and her smile isn't as wide as it would usually be. Next to happy, you now feel saddened and uneasy. Your stomach tightens and you can feel a trace of tension in your chest area. All these new sensations in your body, spark a little anxiety and stress. The extra stress seems to transform your state of relaxed happiness into feeling thrilled and excited although you're somewhat puzzled as to why this is. You urge yourself to keep calm and let your emotions just be. Deep breaths...
Your friend sees you and sits next to you. 'Are you alright?' you immediately ask, as you sense something is wrong. She shrugs her shoulders. 'Oh, I'm fine', she says as she waves her hand through the air. As you are autistic and have a very theoretical mind, you might believe her. It is a possibility after all. She might be fine, she might not be. But she says she's fine so who are you to disagree with her. You let it slide, but the uneasy feeling remains.
'Alright', you reply as your focus is torn away by people laughing out loud because someone apparently made a joke. You look at some new people coming in - one has a pretty red handbag with gold coloured buttons on it - and you hear the conversations around you. 'No! That's awful!' is a sentence you pick up at random. What's awful? You wonder. The person who said the words is laughing and he slaps his knee. Why would you do that when something is awful? You're puzzled and then realise it's probably meant as sarcasm.
You still feel the uneasiness, excitement, sadness for your friend and stress you felt before swirling inside and on top of that, you now get a little confused. Your thoughts keep coming back to your friend. She says she's alright, but her body language tells you differently.
You try to shake it off and start talking about something you're excited about, which helps you let go of any uneasy feelings. However, you notice your friend is looking away from you. Now, frustration sets in. You ask again: 'are you sure you're okay?' She smiles, so she must be happy, yet her body language still is not congruent with her facial expression. You get even more confused. Remember, you have a theoretical mind. According to your brain, anything is possible but none of the theories you have in your head, match the inconsistency between what she's telling you and how she looks. Sure, you can think of a reason she might behave this way, but it's only a theory. You are not able to pinpoint exactly what might be going on, anything is possible.
Someone walks up to you. 'Hey, how are you?' he ask in a tone that betrays he knows you. You, however, have no idea who he is. You look at his face. His eyes seem somewhat familiar, but his hair, his clothes, it's all new to you. 'I'm fine', you say. You don't want him to know you have no idea who he is, that might be rude and hurtful. But as you are puzzled, the happy expression of recognising someone you've met before, is missing. And noticed. The man's energy goes from friendly to... Well, to what? He starts to frown, his smile fades a little and he stares at you. Theoretically, this could mean anything. You realise you're brain isn't getting any closer to putting the puzzle pieces together so you confess you don't recognise him. Now he looks surprised. 'I'm your neighbour from down the street?' he says with a hint of surprise and astonishment. You feel a little nervous now. You should recognise this person, yet you don't. You feel awkward and incompetent. You hold your breath. Finally, it slowly dawns on you. 'Didn't you have long hair, always combed back?' you ask. 'Yes!' he says. 'I went for a haircut this morning, thought it was time for something a little different.' You sigh with relief. You know him, you know him, you know him, you keep repeating to yourself. You ball your fists and stretch your toes inside you shoes. No one will see. You need to let go of some of this tension. No one will see.
Your neighbour talks a little more, something about how he is redoing his garden, but you can't manage to listen. You notice you're getting a little tired. You're also still a little perplexed from not recognising your neighbour and you do your best to let your stress and anxiety go down. You feel like getting up and talking a walk, literally shake things off, but that would be rude. So you sit. You keep yourself in one spot and try to focus on you neighbour. You manage yourself as best you can.
You all get offered drinks and birthday presents are being put on a nearby table. One of the wrapping papers has a really pretty pattern and beautiful colours. You want to go over and touch it, look at it, study it, but it's not yours, so you can't.
Suddenly your neighbour claps his hands and bursts out in laughter because of something your friend said. The noise triggers you. It not only physically hurts your ears, it sets off a wave of anger and frustration. These emotions are as puzzling to you as to anyone else. As a protective instinct, you cover your ears. 'Could you NOT do that?!' you ask a little more unnerved than you intended to. Your neighbour looks at you and you instantly feel sorry. 'Jeez, are you always this agitated?' he replies.
Agitated? I'm not agitated, I'm in pain here, you think to yourself. The sound of clapping and loud laughter hurts you, physically. You can feel some tears stinging behind your eyes. The noise, the relentless noise of this birthday is slow-cooking your brain which tries to manage all the sounds, smells and energy coming in. Okay, relax, you tell yourself. 'Well then, I'll catch up with you later', he says as he nods and walks away to mingle with the rest of the people.
The kids at the birthday party have located some noisy toys and are running around screaming. Again, it physically hurts your ears, like knives stabbing at your ear canals and needles stinging in your brain. You notice you're getting more stressed. The noises around you seems to become even louder than they did before. Your muscles cramp up and by now, you have so many emotions swirling inside of you, you don't know which way is up anymore.
You and your friend both get a piece of birthday cake on a plate. It looks colourful and mushy and soft. You suppress the urge to dip your fingers into it. You still theorise about your friend. While one part of your brain tries to manage all the incoming information, another part relentlessly keeps theorising about your friend's incongruousness of body language and verbal expressions. She broke up with her boyfriend two months ago, which may still be hurting her. She also started a new job, which she was excited about. Is it not what she expected? You gaze at your piece of birthday cake.
Your friend turns to you. 'Are you alright?' she asks. 'Yeah', you reply, 'I just tend to get a little overwhelmed on birthdays.' Your friend nods, but her face remains expressionless. What does that mean? 'You just seem a little distant', she concludes.
Distant? Can't she see that I'm trying my absolute best to stay in tune? You want to explain to her how you feel but suddenly she changes to subject. 'My job is a little much', she says, 'I'm tired lately, I had to take my dog to the vet, you know, I have a lot on my plate too.'
The sudden switch of subject has sent you mental train of thoughts right off a cliff. Everything inside your brain derails and now you have to get a new train going to keep up with your friend. And you better be quick about it.
Too? What does the word 'too' imply? I haven't said I have a lot on my plate, so who is she talking about?
Next to this, your brain instantly cooks up an image of a plate with your friend at work, a bed and a dog on it. You know that's not what she means, yet, it looks weird and you are involuntary distracted by this weird mental scene.
She says her job is a little much... Well, how much? What does that mean, exactly? Is it too much in working hours? Is the commute too long? Is it too much in the sense that it's all new and she needs to get used to it? What are we talking about here?
She also says she's tired. Well, how tired? Fall-asleep-behind-the-wheel-tired? Do-you-need-to-take-a-nap kind of tired?
And how long is 'lately'. Are we talking days, weeks, hours?
And, last, she had to take her dog to the vet. Why? Was it a routine check-up? Is something wrong?
And how exactly is this 'a lot' for her? Does she feel sad, frustrated, worn out, anxious?
You can think of a MILLION things and YOU DO! Before she has even uttered her whole sentence, you've already thought all of these thoughts. Your brain is making a million possible connections, 90% of which are absolutely useless and far from context, but which could theoretically all be true.
You aim to ask her all of your questions, but as you lean in, an older woman accidentally bumps into you and while apologising, she puts a hand on your shoulder. A hand on your shoulder.
All thoughts freeze. You can feel that hand itching on your skin and you can feel how the space between the other person's hand and your shoulder warms up. You stutter something, hoping she will let go, and when she does and removes her hand, you are left with a mental imprint of that touch. It lingers, as if your skin remembers every detail of it. You flex some muscles in your shoulder, moving it around to get the lingering sensation replaced by some other sensation.
Again, this irresistible urge to move. It sets you on fire, like restless leg syndrome, EVERYWHERE!
You're sure it looks weird, but this time, you can't conceal it and it's making you feel uncomfortable and vulnerable.
The level of stress has become astounding. Stay calm, stay calm, stay calm. You try to get back to the conversation with your friend, so you ask her all the questions burning in your head, but as she answers she uses a lot of reference words which, according to your theoretical brain, can mean anything.
Her, that, these, lately, the other day, it...
Your brain - again - constructs a million possible meanings for her reference words, one more confusing than the other, but there's no time to ask for any clarification. There's no space. Your friend keeps talking as the rumour around you is interfering with her words. It becomes more difficult to hear what you friend actually says and you become lost in between references and possible synonyms.
The emotions inside of you are picking up. Anger and frustration for struggling with this whole situation, sadness for you friend who's having a hard time, anxiety and stress because you're physically hurting by now. The noise, the touching and bumping, the clenching of your own jaws, the tightening of your muscles, it's starting to ache more and more. And if this all weren't enough, you also feel inexplicably excited, jumpy and restless but you have no idea why.
Your head starts to feel like you have a brick in it and it becomes harder and harder to focus. Looking at your friend is too much information right now. It stresses your already over exhausted neuron pathways. You try to block any irrelevant information, but it's no use. It's no use. You're just too tired, too overwhelmed.
You get up to go to the bathroom, forgetting your friend was in the middle of her story. She looks at you in surprise as you walk away but you haven't got the mental space anymore to try and interpret what she might be thinking or feeling.
The air feels colder and calming in the bathroom. It's more silent here, but your ears keep ringing. The cold tiles cool down you're overheated skin and as you let yourself slide onto the bathroom floor, you notice you're having trouble breathing. Your exhausted brain has lost its capacity to stay calm and reason and you feel a wave of adrenaline rush through your chest. Your heart is pounding. You want to cry but you can't. You want to hit the wall with your fists, but you're frozen. You can't even comprehend at this point why you're feeling this way.
In an attempt to let off some steam, you start rocking back and forward. The feeling of being swayed calms you somewhat, it takes your attention away from the nauseating feeling in your stomach, from the cramps in your chest. As you try to focus on swaying back and forth, you can still hear everything that is going on in the living room nearby. Every cup that's being placed on the table, someone's laughter bursting through the bathroom door, it hits you, punches you in the face and it hurts.
You get into fetal position on the floor, covering your ear. It's alright, no one can see you here. And you wait. You wait for the meltdown or panic attack to back away, you wait for yourself to calm down. All these emotions, all these sensations, all these thoughts, they need to become untangled, they need to flurry back to the ground like leaves after a whirlwind. You wait, you wait, you wait. And you rock, you cringe, you cry internally. It's alright, no one can see you here. No one can judge you.
When you notice you can breath again, you get yourself together. You stand up, feeling instantly dizzy. Your heart is still pounding through your chest but you know, if you wait a little, it will pass. You will need to get out there, you think to yourself. You will need to expose yourself again to all the overwhelming input that accompanies a birthday party. You wish you could be a better friend, you wish you could be normal like the rest, you wish you wouldn't go into overdrive every time there's a lot going on outside of you. You wish for things beyond possibility. Get a grip!
You finally muster the courage to walk through the bathroom door and back into the living room area. You see your friend talking to your neighbour. Amidst the noises of cutlery connecting with plates, kids running around and the sound of wrapping paper being torn off presents, you pick up a single sentence: 'She's so weird though, I was talking to her and she just got up and left.' Your neighbours laughs. 'Yeah, she's really self centred. Caught up in her own little world. I never know what she's thinking.'
Everything becomes frozen. Your breath, the air around you, the scene you're looking at, it's like everything is suspended in an icy cold.
You back away. You're still in a meltdown. Your brain still won't function properly. There's no way you could even begin to communicate what just happened to you. No words will match how you are feeling right now. And you're too tired to even speak. The thought alone of having to control all the muscles around your lips, is too much already. You want to scream, you want to tear down the walls, you want to dig your fingernails into your own skin in sheer dispair and anger and heartache and hopelessness.
Instead, you wave a quick goodbye to everyone. If you ever want to be accepted again, you need to remain calm and controlled. So, you fake a smile, hide a tear, bury your meltdown below a feigned charme and socially acceptable behaviour. At least now, you can leave with some dignity.
You walk out the front door by yourself and get into your car. You turn on the engine, put the car in gear and drive off. Today would be a good day to drive off a bridge or into a tree. Today would be a good day to be done with it all, forever...