How to be kind – an autistic perspective
Hannah Gadsby is a well-known autistic comedian. In her latest show, Douglas, she provided the audience with an introduction. A pre-show preamble. In it, she lets the American audience know that they will not like the start of the show. But she encourages them to stick around because the later parts are hilarious, they will enjoy it, they will laugh. I watched it, they did. She warned them that they just might not like the first part. They may even be offended. Well, this is my pre article preamble. My introduction. I am letting you know that you may not like the parts of this article. You may feel offended. You will quite possibly bristle.
You might feel bad about decisions you’ve made, but I want you to remember that you made those decisions with the best information you had available. You will possibly be tempted to stop reading, but I promise you now that if you read to the end, you will be glad you did. You will feel better, you will feel empowered. It’s worth the uncomfortable bit to get to the good bit. It won’t take too long. I’ll try not to waffle too much.
This right here is the start. In this article we are going to look at what constitutes being kind to autistic people. And you might be confused – why would you be upset about someone talking about kindness? Good question. The answer is because what many people think of as being kind to autistic people actually is not kind. Some of the things done in the name of kindness to autistic people are actually harmful. Strap yourselves in folks. Here we go.
To begin with, I am going to tell you some of the things that people have done to me, to my autistic family members, and to my autistic friends and colleagues all in the name of kindness. This is a tiny snapshot of the things we have experienced – it does not begin to go into our experiences in any kind of depth. We just do not have the time, so here are some ‘highlights’ as it were:
- Having others inform us about what we are going to have difficulty with. “Of course he won’t be able to understand the emotional side of books.” And a personal favourite: “I know you will have trouble understanding this Mrs McLaughlin, but meetings sometimes happen on different days.”
- Having others make decisions for us without our input. “I chose this place as it would be easier for Marion.” “We decided that this is the best place in the room for him.”
- Having others limit our choices. “They get overwhelmed when I offer too many, so we just offer two choices.” Because stopping us from getting overwhelmed is kind, right?
- Talking over us. Like the time someone interrupted me mid-sentence to say, “Well, I have lots of experience of autism so I shall tell you…”.
- Not engaging with us, especially when we do something unexpected. “Oh, I’m so sorry, I’ll leave you alone”. Because I started stimming by flapping my hands and avoided eye contact in the middle of the street after being approached by a charity collector.
- Slowing down their speech. Just. So. I. Could. Understand. What. They. Said. Despite the fact they spoke at a perfectly normal speed before they found out I’m autistic and I had already contributed to the conversation meaningfully.
- Lowering their expectations. “You’re really articulate!” “You are married?” People express amazement that I am well qualified, that I am a professional, that I have a network of friends. “We shall just suspend the curriculum until their anxiety lessens”. And don’t worry, they aren’t going to achieve academically anyway so those lost opportunities won’t matter. “It’s ok, I know she didn’t mean to be rude.”
- Tell us we do not look autistic. “Oh, you’re autistic? I’d never have known. It must be really mild.”
- Tell us we should not be defined by our autism, or that we will still be loved despite being autistic.
- Minimising our experiences. “Everyone feels anxious sometimes.”
In every example above, those who carried out these of these ‘acts of kindness’ genuinely thought they were doing the right thing. They thought they were being nice, supportive, and helpful based on the information they had about autism, but in fact all of them are deeply problematic. Honestly, there are so many more examples that I could write enough to keep you reading all day. That is not the purpose of this article though, the purpose is to discuss how to actually be kind to someone who is autistic. So just how can you be kind to an autistic person? Fear not dear reader, the answer is really simple. Here are four easy steps to take.
Step 1: Do not make assumptions
Every single autistic person is an individual. We all have the same diagnosis for a reason, sure, but we are as unique as can be, just like non autistic people. Sometimes even more so. There is no one size fits all solution. Maybe some autistic people do have difficulties with the things other people assumed I would – it’s perfectly possible. Just because they did does not automatically mean I do, or any other autistic person does. Those same people may not have difficulties with the things I do, because we are all individual, not carbon copies of each other. Most of the time when people make assumptions about autistic people it’s because they have lower expectations of us than they would have of someone non autistic – and when it’s not lowered expectations it’s often assumed I am a tech genius. I am not a tech genius. I will more likely break your tech. Don’t let me near it. Have high, reasonable expectations of autistic people. Expect us to be able to make progress and seek out ways to help us carry on to the next step. Being autistic does not mean ‘not capable’, it does not mean ‘broken or less than’. So next time you find out someone is autistic do not assume they are going to have problems with things the other autistic people you have met or seen on TV had. Do not assume we are savants, or that we have an intellectual disability, do not assume that we will be unable to do anything.
We deserve opportunities the same as everyone else, so do not let assumptions get in the way of our personal growth. Let go of every stereotyped assumption you may have or heard about autism because I can guarantee we do not all fit them. Think about the stereotypes that persist for other minority communities and how unhelpful, how unreliable they are. Think about how offensive they are. Think about the assumptions people may have made about you based on your gender, your age, the colour of your skin, your accent – think about how it felt when people made those assumptions. That is how we in the autistic community feel when someone assumes things based purely on the fact we are autistic. We have more in common than you may have thought.
Being told that we shouldn’t be defined by our autism assumes we see it as negative. People have asked me if I am angry about the fact I am autistic. Some people assume that since they perceive being autistic in a poor light that I will too. Well, I am not angry. For every negative aspect about being autistic there is a positive. Yes, I experience sensory hell at times, but I also get to experience sensory bliss. I have executive function issues, but I also hyper focus like no non autistic person I know. When there is a miscommunication, we both have the opportunity to learn, and nothing, absolutely nothing in the world beats autistic joy. So no, I am not angry about being autistic, because I am much more than the sum of my difficulties.
You may have been advised to just let it go when an autistic person is rude because you can assume that we didn’t mean it. Well, as an autistic person I can assure you that on occasion I have been pretty darn rude to people and I meant it. I absolutely did. It’s not happened often at all, and I do not regret it either, given the same situation I may well do it again. I am a human being, I am not perfect, I’m not an angel, I am not inspirational, I try to be the best I can be but I am flawed and messy. So, don’t just assume we didn’t mean to be rude, don’t assume we didn’t mean to be thoughtless. Maybe we did, maybe we didn’t. But by making that assumption, not holding us to account if we hurt someone’s feelings, does not help either me or you. Which leads nicely to our next step:
Step 2: Talk to autistic people
Talk to us. Many of us are really interesting, funny, kind, generous, sweet, empathetic, creative people. As a group we are pretty damn fun a lot of the time. If you want to truly understand autism, your best bet is to talk to autistic people.
And that last sentence is where some of you might be feeling prickly again, isn’t it? I get that, but try to understand where we are coming from – as a woman I have spent a lifetime around men. I had a father I grew up with, many male friends, I had men as flat mates, boyfriends, male colleagues, I have been married to a man for over 10 years and I am raising a son, yet should you come to me to understand men? Of course not! You should talk to men! Likewise, I know lots of men who grew up with mothers, sisters, female friends, female flat mates, girlfriends, wives, raising daughters and I would be horrified if any of them thought they understood what it’s like to be a woman better than I do. So why would a non-autistic person have a clearer understanding of the day to day life on autistic people than autistic people? For clarity, there are absolutely wonderful non autistic allies out there, and every single one of them will tell you that you should speak to autistic people, plural. Many of us. On his website, Steve Silberman explains why he won’t write any more books on autism:
“One of the reasons my next book will not be about autism is because I believe autistic people should be taking centre stage in this ongoing societal conversation.”
That is good allyship right there, that’s how an ally helps us – by encouraging people to engage with the autistic community. In his book NeuroTribes he raised the voices and lived experiences of autistic people by talking to us and sharing our experiences, not just the experiences of those around us.
The person who assumed I’d have trouble with meetings happening on different days would have been far less offensive if she had said, “when it comes to meetings, is there anything you find difficult?” The person who thought autistic people have trouble understanding emotions would have been better asking, “when it comes to emotions and understanding others, are there any difficulties he has?” And if there are difficulties, follow that up with:
How can I best support you with that?
Listen. As a society it is no longer acceptable to have conversations about minority groups without representation from members of those groups. We need to be involved in conversations about autism. Making decisions for us without us doesn’t work, for anyone.
As someone who delivers training in autism, I have yet to run a training course where people have not approached me afterwards to say how much they valued the insider insight. People who had been taking part in training in autism for years, but never from an autistic person, always come away having learned more than they expected. We always meet the expectations of the training course, we always hit the targets set – but the people attending the courses tell us that being able to ask us questions that they may not have been able to ask a non-autistic person was valuable. Seeing and interacting with an autistic adult changed the way they then interacted with other autists for the better. Listening to us helps. Which brings us to:
Step 3: Believe us
One of the reasons many autistic people do not open up about their experiences is because we are not always believed when we do. Just because you may not hear the hum of the electricity in the walls does not mean we don’t. Just because you may not understand why something is important to us, does not mean it is not important. If we ask for an accommodation, it may well have taken a huge amount of courage to get to that point. Our brains are built in a physically different way, we do not experience the world the same way non autistic people do, so believe us when we talk about how the world feels to us.
I ask that you put yourselves in our shoes for a moment – imagine that you are struggling with something that nobody else around you struggles with. It niggles, it bothers you, and eventually you have to say something. You go to the first trusted person you can think of – maybe your partner or your best friend. You tell them how you feel. It takes enormous courage to admit you need some support with something, or to share your experience. You are feeling incredibly vulnerable. And they dismiss it. They dismiss it right out of hand. Tell you that you are imagining it, or it’s not as bad as all that. That you just have to get over it. That other people just manage so you should too. How devastated would you feel? Well, this is very often our experience. If we say that something is a problem, we mean it. If we talk about our lived experiences, know that they are real. We know that everyone feels anxious at times. We really do. But they are not all anxious about the same things we are anxious about, or for the same reasons, or with the same intensity. We know everyone has to process sensory information. But they don’t process it the same way we do. We have a huge amount in common with non-autistic people – on the surface of it my life looks incredibly similar to many non-autists but we do have fundamental real differences. These differences are real, they are not imagined. So, believe us when we share our lived experiences.
Step 4: Take action
You have let go of assumptions. You have listened. You believe us. It’s then time for action. If an autistic person tells you they are finding it hard to concentrate in a particular environment, if they have come up with a couple of suggestions to make things better, implement them. If an autistic person tells you that the label in their clothes is itchy, cut it out. If an autistic person lets you know they are on the verge of a meltdown and they need you to stop talking, then start listening. Autistic people are famously good at thinking outside the box – many of us can come up with great ideas, ideas that wouldn’t occur to most other people. You may not know how to improve a situation for an autistic person, but give our ideas a go, you might be pleasantly surprised. If you know or are involved in supporting autistic people in any way, either as a parent, a partner, a professional, an employer, do your best to implement reasonable adjustments. We do not ask for them for no reason. They are meaningful and they help us. It is not enough to know that we are struggling with something and empathise. It’s a start. But we need you to move on to the next step and do something to improve the situation. Autism is protected under the Equality Act – we have a legal right to support to allow us the same opportunities as everyone else. So, do something to make sure that happens. And do it following discussion with us, make adjustments that are appropriate and will make a difference with our input every step of the way.
Revisiting those ‘kind’ acts from the beginning of this article that didn’t help, let’s see if we can improve them:
- Ask autistic people what difficulties they might have. And while you’re at it, ask them about their strengths too.
- Include us when making decisions about us, both on a personal level and at local and national government level too.
- Expand our choices. Sure, you can start small, but we need to learn how to make decisions, so give us opportunities learn.
- Listen to us rather than talk over us. We are autistic all day, every day, waking and sleeping, every second of our lives. Our lived experiences are valuable and they differ from those of non-autistic people.
- Engage with us. Yes, we may flap our hands about a bit, we may avoid your eye contact, but that does not mean we can’t still engage with you. Many of us love some social contact.
- Ask us what pace of speech suits us. Some autistic people like slower speech, some like faster speech. Sometimes non autistic people have asked me to slow down my speech. And don’t change the tone or pitch of your voice unless we ask either.
- Have reasonable expectations, don’t lower them because we are autistic. As an undiagnosed autistic child, I was expected to learn manners, and I did. We are more capable than most people realise. It’s ok if we can’t do x, y, or z. But are there skills we can learn to get us there? It’s ok if we do things at a slower pace, and it’s equally ok if we do it at a faster pace too. Base expectations on us as individuals, not on our diagnosis.
- Don’t tell us we don’t look autistic – it’s not a compliment. There is no ‘look’ for autism.
- It is perfectly ok to be defined by our autism, it informs and underpins every thought, action and experience we have. Everything we do, we do it autistically. It is not the only thing that defines us, but many of us see it as a key integral part of who we are. And that’s just fine. Autism is not a bad thing.
- Don’t love us despite being autistic, or love us but hate our autism. Being autistic does not make me, or any other autistic person less worthy of being loved, and autism is not separate from us.
- Validate our experiences. You may not understand them. You don’t have to. Just don’t dismiss or minimise them.
Maya Angelou famously said:
“I did then what I knew how to do. Now that I know better, I do better.”
So please, if you have inadvertently hindered us, if you made an unhelpful assumption when trying to be kind to autistic people, do not feel bad about it. That is not the purpose of this article. You did the best you could with the knowledge you had. That’s all any of us can do. Hopefully you can move forward armed with more information, better empowered. Hopefully you will go and read more from other autistic people. There are lots of us out there who are trying to help others develop knowledge, understanding and acceptance of autism. You can lose old assumptions, take the new information, and use it to empower the autistic people in your life. And that, dear reader, is kindness in action.
Watch Wendy Ferguson share her poem on the subject of normality.
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A New Understanding of Myself
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My Lived Experience
Asking me to talk about ‘my experience of autism’ is as odd as being asked what my experience is of having blue eyes.
Masking has become much more talked about as understanding of autism grows. But what is it, why do we do it, and what is the impact?
An Undiagnosed Autistic Life
A childhood full of confusion and fear. Loving family, but so often misunderstood.
What knowing I am autistic means to me
After 39 and a half years of not knowing what made me tick, why I communicated and behaved the way I did, I finally got confirmation that I am autistic.
My Autistic Journey
For years I have struggled to comfortably fit in, understand people, and be myself.
Growing Up Undiagnosed
I was diagnosed as autistic eleven years ago at age 21. I had spent my entire life feeling different, not quite fitting in, but not knowing why.
Trusting What Remains
I struggle to trust my processing of this world, but I’ve found other feelings to rely on.