I would like to start by telling you a little about my strengths. When something interests me, I have amazing powers of concentration. I have a phenomenal memory for factual information. I am excellent at spotting patterns and errors; I am very observant, and great at the details of anything I am focused on. I am unfailingly honest and forthright, determined, tenacious and persistent. I am reliable, kind, compassionate, empathetic, and have a highly developed sense of social justice and fairness. I will stand up for what I believe is just, even if it is contrary to popular opinion.
I am autistic. It is my superpower, but also comes with many challenges. I want to share with you something of what it is like to be a child or adult with autism in an education setting. I want you to always remember that, while we have many things in common with other people with autism, we are also all unique. We share strengths and challenges, but we also differ in many ways. If you have met a person with autism, you have met one person with autism. The magnitude of specific challenges differs in each of us.
I have superpowers. But I also have my Kryptonite – it’s called social communication, social demands and disordered sensory processing. I see the world through a different lens to you. Imagine if you were me and the world looked different and people were confusing. As I get older, I’ll work it out, but I need patience, compassion and understanding.
Eye contact can hurt. I can often only process one sense at a time – if you ask me to make eye contact (which is hard) my ears may no longer work so well. In order to process smell, I need to close my eyes. Light touch can make me feel like I am about to explode out of my skin, but deep pressure and heavy weights can reassure me.
Listening is hard – people sound so different, talk at different rates, use different language to each other and are constantly competing with background noise. The air conditioning or the white noise from the projector fan may be at the same volume for me as your voice.
I may need to turn your words into pictures before I can understand what you are saying. Help me visualise! It will help everyone else too. Give me time to process – I may need minutes to turn your words into pictures, understand your question, formulate an answer in pictures, then turn those pictures into words and say them.
Here’s a paradox – I may be very good at writing and reading, but my comprehension and processing may be very poor. It is like the difference between expressive and receptive spoken language. Don’t assume that just because I can’t speak I don’t understand. Chances are, I understand everything.
I probably have visual agnosia – I struggle to recognise people. If I see them out of context, I don’t know their names or how we know each other. I struggle to remember my classmates’ names and faces. I will confuse one brown haired boy with another. I may look at a photo of a boy with blond hair and think it’s my brother because they have the same hair colour and similar build. Using facial features to recognise people is something I will have to learn over time. Help me. I struggle to read people’s emotions and face expressions. I can get good at this, but it is very hard work and I will be exhausted after a day of trying to work people out and communicate with them. That’s why it’s easier to be on my own, even though I may not want to be. People are a mystery.
I think that because something is in my head or in my heart, you know about it. I still sometimes forget this is not true. I am 39 years old. I have only fairly recently learnt that I need to tell my friends I love them by calling them. A neurotypical friend who gets me told me to do this. It has transformed my friendships. Our hearts are open, we feel things deeply. We forget that we are not open books. We often have a flat affect, and we do not even know. We think we transmit our every thought into the universe, when often we transmit nothing. People often think we are unfeeling, aloof, uncaring or closed off. This could not be further from the truth. The universe hurts and the injustices in it wound me to my very soul. I often have to block it out because I feel too much. I cannot watch the news. I can barely stand to hear it on the radio. To have two senses bombarded with other people’s pain is too much.
Face expressions can be hard to come by. Just because my emotions are not connected to my face, doesn’t mean I’m not feeling deeply. I have anxiety. Lots of it. About lots of things. The people in my life may not even recognise it.
Remember my initial reactions when stressed out are fight, flight or freeze.
I’ll always try to do my best. My best in that moment may be really, really awful and hurt people. I’m trying. Help me.
If I’m stressed out, my words will fail me. When I am anxious, I am effectively nonverbal. Don’t ask me to speak or answer questions – this will just make me more anxious. Don’t be confused if I’m swearing – that’s not me speaking, that’s me downloading and I’m so far gone I cannot find any other words. I will also say ridiculous things when I’m anxious, sometimes the complete opposite of what I think or feel. I will often say what I think you want to hear. I am becoming a consummate actor.
To you, I look most autistic when I am under pressure; I am struggling to remember my social rules and look neurotypical. Don’t expect too much!
If I am having a meltdown, it’s all gone too far. I am not in control. I am not manipulating anyone. My release valve has popped off. When all the steam gets out, I’ll be fine, but you won’t. I forget this, and if I’m a kid, I likely won’t notice and won’t understand why you are so upset with me – after all, I’m feeling ok! You shouldn’t forget. You’re the adult.
You’re the adult.
You’re the adult.
You’re the adult. Be an adult. Let me be the kid. Stay calm, or go somewhere you can be calm. Even if that is away from me.
We are not master manipulators. We haven’t a clue how to go about it.
Meltdowns are like a pressure valve being let off all at once. To reduce the chance of me having one, I need to let off the pressure a little at a time – by taking breaks, doing heavy work, running around, bouncing on the trampoline, riding my bike, spending time with my special interest, taking deep breaths, being mindful, meditating, doing some yoga. Imagine my ability to hold it all together is like a box. Every small thing that happens in my day that affects my sensory system or my anxiety is like a ball that goes into the box. When the box is full, I am so anxious and dysregulated that I will have a meltdown. If I only add balls (the funny smell in the car from when it was cleaned yesterday, your perfume, a poor night’s sleep, running out of my favourite breakfast cereal, the scratchy label on my uniform, my sibling niggling at me, having to wear shoes, not understanding something someone said in a social context, not understanding the game the kids are playing in the playground, being unable to join in because I’ve forgotten how, forgetting people’s names) and I don’t remove any, I will fill the box. I need help to learn how to take those balls out, and also how to keep them out – I need to decompress in small ways, all the time, and I need to learn the skills of adaptability, flexibility and problem solving. Help me by adjusting my environment and adjusting the way you interact with me.
I want to love my life. Sometimes I don’t. I have trouble regulating my emotions, and also have trouble with separation of affect. This affects my interactions with others, and also my problem solving. My first solution to a problem is often disastrous, and comes from my amygdala rather than my frontal lobes. Imagine what my first solution might look like if for a day, a week, a month or a year I don’t love my life.
Imagine for a moment how I feel when every day I have to get up and spend most of my day in a place where not many people get me, but they seem to understand each other just fine and they know what to do when talking to each other, where the noises are too loud and constant, the clothes scratch my skin, people demand constantly that I work hard to understand others and get along with them when I just want to be me. Imagine every day, in a thousand different ways, being told that you are not enough just as you are. That you need to change, that you need skills that you are lacking and don’t even understand. Imagine being asked to conform so you don’t stand out, when you innately know that you are different. You don’t know any other way to be. You’ll have it figured out in a couple of decades, but just now, that knowledge is so far beyond your experience.
Now imagine what it would be like for me to have a teacher and parents who give me space when I need it, let me have my moments to decompress, understand that sometimes it is all too much for me, who love me and accept me unconditionally.
Look at me not as a kid with autism, but as a kid with superpowers. They’re there. My parents may not even know they’re there. My parents have been getting phone calls from kinder and school for years. My parents have probably had to sign incident reports – a lot. My parents are often ostracised by the other parents. They feel tense and anxious when they come to collect me, because they’re waiting for my daily litany of sins. They are not sins. They are expressions of my inability to cope with the demands school puts on me.
If my parents say “This doesn’t happen at home”, please believe them. Ask what they do differently. If my parents say “He explodes all the time after school”, please believe them. Chances are, I’m keeping my shit together for you all the live long day, and then I need to decompress. In a big way. Help me decompress at school. Get me to do heavy work. Give me (and everyone else) frequent breaks. Get me bouncing on the trampoline, carrying heavy books, running around outside. Give me a music player when you can. Set up a quiet corner. It’s not for punishment, but so that we don’t get to that point.
Consequences = punishment. If you punish me, I think you don’t like me. This increases my anxiety and makes the next incident that much closer. I don’t even get what I’ve done wrong, or how the consequence is associated to it.
Don’t try to be a genius – you don’t have to solve problems on your own. Involve me. If I am non-verbal, communicate with me in a way I understand. Solving problems with you will teach me valuable skills, teach me how to empathise, learn perspective taking, how to be flexible, and how to problem solve. These are skills that I am innately lacking.
Ask me what is going through my head. Don’t ask me what I’m feeling. Chances are great I won’t know or I won’t have the language to tell you. Sit next to me, draw pictures with me, be silent and let me tell my story.
Use my name first. Then: Talk less. Talk less. Talk less. One word instructions are great. I’m already anxious and overloaded. I’m thinking about what is going to happen in the playground today. I’m trying to remember all those social rules you guys have been teaching me over the years. The fluoros are buzzing and flickering and the kid next to me smells funny (his mum uses OMO) and I can’t block any of it out. Use my name and then keep it simple, and chances are I’ll follow along.
Please don’t start sentences with “Why can’t you just…” I just can’t, ok? Help me figure it out. Help me learn. Help me develop life skills. Help me bypass and compensate for those things that really are beyond my reach.
Be explicit and tell me what to do. Don’t tell me what not to do – that just confuses me. Chances are good my ears are no longer working so well if we’re having problems.
I may not be able to learn unless I’m moving. Be creative.
I probably wrestle with sleep every night. I struggle to get to sleep, I struggle to stay asleep. We all need sleep to download the emotions and anxieties of the day before. Sleep is the great reset button of the soul. If I don’t sleep well, I carry all the emotions and anxieties of yesterday into today. You will quickly learn what that looks like when I walk into your classroom first thing in the morning. Mum certainly knows what it looks like when I get out of bed in the morning. Go easy on me on those days.
Don’t let my stims annoy you – they make me look or sound different, but if you get rid of the less obtrusive ones, I’ll develop others that may not be so acceptable to you. I need them to decompress and process my emotions and the world around me.
My chronological age may be 9 years. My academic abilities in some subjects may be that of a 13 or 15 year old. But my emotional age is only 4 to 5. That is where my social skills are at. Things are getting complicated. Gently help me understand my peers. Older and younger kids are easier – older kids compensate for me, and younger kids are my social and emotional peers.
Although I may be super-bright, I sometimes struggle with the simplest things. Organisation may be one of my biggest strengths (everything in its place) but conversely may be one of my biggest struggles. I struggle with executive functions – those things that I would love to have a PA for! Teach me how to overcome this, teach me how to be organised.
Use my special interests – not against me, or for your benefit, but for mine. Use them to get to know me, to build a relationship with me, and to engage me in whatever we are doing. Usually they will last a long time, but sometimes they change weekly – be ready for this.
I see black and white. Help me find the shades of grey. Model making mistakes. They are one of my biggest fears. Perfectionism can be a strength when used to achieve my best, but is crippling when it hinders me starting (because I don’t want to mess it up) or finishing (because it isn’t perfect yet).
You cannot teach me to be flexible by being rigid yourself. Bend a little. Give a little. Make it our way, not your way. Otherwise, you are just modelling rigidity.
Don’t desire compliance. That way, you miss the great ideas and innovations. Accept everyone for who they are. We are all products of our journeys.
See me. Not a person with autism. I am not the sum of my challenges. I am the sum of my superpowers. Harness them for the greater good, but also for me.
And remember… It’s a marathon, not a sprint.
Watch a video of Pavlina’s reading here:
This piece was read as part of Origins and Superpowers, a public readings event held by Scope and Melbourne Library Service in December 2015. A group of writers with disabilities who had worked with professional writers in the Telescope Workshops read selections from their work across the genres of fiction, memoir, poetry and non fiction.
Telescope is one of the arts programs run by Community Inclusion staff at Scope and it includes workshops, a writing prize, awards and public readings.