What I Want Non-Autistic People To Know
Dear non-autistic people,
I want you to know that:
Autism isn’t an illness. It is a neurodevelopmental condition. This means different things for different autistic people. For me, autism makes me disabled, because there are significant barriers to navigating everyday life that exist because of my autism. But, autism isn’t a bad thing. I wouldn’t change it, because then I wouldn’t be me.
You laugh at autistic traits like stimming and needing things done a certain way. You think the person is “quirky”. You say that you wouldn’t laugh if they were autistic. But, that’s the thing. You don’t know who is autistic. I’m sitting right in front of you, you just can’t tell.
We may appear to function very well. We may appear to manage life well and not need any support. But you don’t see me when I get home and can’t get out of bed for three days because I am so exhausted. You don’t see how much effort and energy masking takes me, and the emotional toll it has on me.
Autistic people are not all the same. Some of us like trains, and some of us are good at maths. But, some of us like dance and some of us are good at art. The things we find hard are not all the same. Some of us can make eye contact and others can’t.
Some autistic people can be super social. Not every autistic person is introverted. Not every autistic person prefers their own company. Not every autistic person hates the thought of socialising. Autistic people can have lots of friends.
Autistic people can get married. We can have romantic relationships. Some of us are asexual, like some non-autistic people are asexual, and that’s okay too. But we become adults, and that means many of us are in relationships. We can still be autistic too.
The idea that someone making eye contact means that they are listening is rooted in ableism and frankly is just incorrect. Eye contact can be painful for some autistic people. It can mean that we can’t focus on what you are saying. It’s much easier to listen by not staring at your eyes.
Stop blaming me for miscommunications when communication works two ways. You can’t expect me to just know what you mean if you don’t state it clearly and literally. My brain is different to yours. That does not mean my brain is in the wrong. We have to work together.
I don’t “live with autism”. That makes it sound like a disease. Or something that I carry around. Autism influences every part of me, how I see, understand and interpret the world and how I respond to things around me. Autism IS me. And that’s okay.
Autism is not all bad. If you could experience autistic joy, you would understand, because autistic joy is the most wonderful feeling in the world. Our brains hyper-focus on whatever it is that is making us happy or excited, and we are completely captivated by joy. It is all-encompassing and it is wonderful.
When an autistic person tells you that they are autistic, don’t say “don’t you mean a person with autism?”. The majority of autistic people prefer identity-first language, i.e. ‘autistic person’. You shouldn’t need to be reminded that we are a person first, before our autism. You wouldn’t say that “I have left-handedness”, would you? You’d just say that “I am left-handed”.
Everyone is not on the spectrum. The spectrum means that every autistic person experiences different combinations of autistic traits to different intensities. Just because you share an autistic trait (because, spoiler, we are human too, so autistic traits are human traits after all), you don’t have an autistic brain.
We are fed up of allistic people (i.e. people who aren’t autistic) having conversations about us without us. We deserve to be involved in discussions about us without being shut out of the conversation. In fact, we must be involved. You must consult us. Autism training is not autism training without autistic trainers.
Meltdowns aren’t the same thing as tantrums. Meltdowns are involuntary responses to feeling overwhelmed. Stop labelling autistic kids “naughty” or “spoilt” for something that they can’t control. Support them and try to understand the trigger instead.
Never assume that the person you are talking to isn’t autistic, just because they don’t appear to be. Time and time again I’ve been involved in conversations where people just assume that I’m not autistic, because how could I be? This is exhausting. Never make assumptions.
Thank you for listening.
Yours sincerely, an autistic person who is tired of being misunderstood.