A lot of people have contacted me to say that they’ve struggled with well-meaning people saying, “I have that too”, when they’ve tried to explain what it’s like to have autism. And it’s not just people with autism, but people with other hidden disabilities too.
The problem that we have when people say it, is that most are trying to be kind. They’re trying to empathise. They’re trying to find common ground and normalise our experience.
Most of us know that. It’s because there is kindness behind it that we don’t just stop right there and have a good scream (not because we’re having a meltdown, just because we’re human and it’s frustrating).
Before I continue I want to make it really clear that we don’t want you to stop trying to understand us. Those of you who are trying will sometimes make mistakes. I make mistakes!
Sometimes when you ask me if your dress looks good, I will freeze like a bunny in the headlights. Sometimes I’ll blurt out, “It’s a bit…” Before remembering that this question isn’t about the dress, it’s about boosting confidence and making someone feel good, and adding quickly, “Blue! It’s a bit blue, but it looks lovely.”
I spend a lot of time working out what it is that you need me to say, and saying that. Because most people don’t say what they mean. That’s not to say that I don’t mean what I say. If your dress looked awful I would say that it didn’t suit you. I wouldn’t lie. But my idea of what looks good may not be one you want to follow.
When I get ready I will say to my husband, “How do I look, and bear in mind that the only answer I’m looking for is ‘Fabulous’?” Because I want someone to tell me I look good, but I don’t have any great respect for my husband’s fashion sense. I ask for what I want.
Being around me is a bit like having an instruction manual to hand. Some people find me blunt. I’m not good at subtleties.
I wooed my husband with the incredibly romantic line, “You’re just my type. You’re tall and kind and funny. I like you.” There’s never been any game playing and I don’t understand people who play games. Why not be honest?
But I have to remind myself that the rest of the world doesn’t do that. They use euphemisms and vagaries. The world is complicated.
So when I describe my struggle with phones, I know that a fear of phones is quite a common thing. I know that many people without autism don’t like talking on the phone. I can’t speak for everyone, but I suspect it’s for similar reasons.
I don’t like the phone because it makes me stupid. It makes me really stupid.
I’ll explain what’s behind that for me. First there’s the unknown. If someone is ringing me and I don’t know the number, then it could be anyone.
How will I predict who is there? How will I know what they want? Which version of me needs to answer the phone? Will it be Work-Me, Social-Me, Family-Me, Shouting-At-Telemarketers-Me, Important-Appointment-Me or someone new?
When I answer I will have milliseconds to decide how to present myself to them. I will need to work out if they are genuine people or fraudsters. I will need to remember to question everything. I will need to stay alert because my default setting is to take everything literally.
Once I’ve answered I’m already struggling. I rely on things I have learned to work out what people mean. I’ve spoken about this before, I think this is why neurotypical (NT = people with typically functioning brains, i.e. Not autistic) people don’t like phones either.
NTs have a brain that provides the answers when they look at someone. It tells them the expression is happy, sad, indifferent, lying.
My brain supplies the information. It gives me the movement of the face, the frown, the curled lip, but then I have to compare these to what I know to work out what you’re feeling, and that’s not as simple as “happy face” “sad face”. You’re blooming complicated!
So both of us lack that information. But you probably don’t realise that you’re also working on tone of voice. I’m not as good with tone, but I’ll turn what I have to that. I can’t tell a fake tone from a real one. I struggle with accents.
So my thinking slows down as it struggles to make a complete picture of what is happening from much less information.
Basically I’m stupider. Without seeing your lips move, sometimes I can’t work out the words you’re saying. I lag behind. It’s almost like having to translate each sentence, and all the time there’s someone on the other end waiting for me to respond.
The structure of my life is preparing for the interactions I will have throughout the day. I can prepare for making a phonecall, I can build up to it, imagine all the scenarios (and yes I have to do this every time, and yes it annoys me too), and decide how I’ll respond. I’ll be stupid when I call, and I hate being that slow and lumbering. It’s not who I am.
But when my phone rings there is no time. I’m on the back foot, I’m lost and unsure, and I know for a fact that I will be talking to someone without the full arsenal of my learned coping mechanisms to protect me.
Then I answer, and it’s a sodding recorded message.
So when you say you don’t like phones either, I believe you. I do. I know lots of people with anxiety struggle particularly with phones, and that’s real. I don’t want to minimise that. I don’t want to make you feel bad.
So the conversation goes like this:
Me: Well one of the things I struggle with is phones.
NT: Me too! I hate phones.
Because now I’m stuck. I don’t want to explain in detail. It’s exhausting. It feels like I’m having to justify myself.
But that’s not the only reason. If I now explain to you just what it’s like for me, I’m trampling on your feelings. Yes you’ve just trampled mine, but I know that was accidental. If I explain then I’m not listening to your issues, and I would be doing that knowing full well that it sounds like I’m competing with you.
When you analyse your social skills as much as I do, you get a good idea of what will hurt other people. I don’t want to hurt people.
I know that what you say is true, but is it helpful?
The main thing “I do that too” does, is it shuts down the conversation.
Now I can’t explain it to you without potentially hurting your feelings. You’ve invalidated me, but I don’t want to invalidate you, because I know what that feels like.
It’s the perfect Catch 22.
So what could you say that would help?
I know I worry that people don’t believe me. I’ve been around NTs who don’t know my diagnosis as they say, “Oh everyone has something these days! It takes nothing to get a diagnosis! It’s just fashionable!”
I know some people think that. And I worry that people will think that all my difficulties are made up because I’ve hidden them so well.
Acceptance is better than empathy, especially empathy that is getting it wrong. The thing you’re trying not to do? You’re doing it. We don’t hate you for it. We love that you’re trying. But you’ve just stopped us sharing. You’ve just shut it down. And I don’t think you meant to, I think you want to hear what I have to say. I think you care.
Sometimes I want to snap. Sometimes I want to say, “You wouldn’t say to someone whose vision was so reduced that they needed a guide dog, ‘I wear glasses! Can’t see a thing without them’. You wouldn’t say to someone with a Hearing Aid, ‘Sometimes my ears pop when I go up a hill, and I can’t hear a thing, I know what that’s like’.”
You don’t need to share an experience to empathise. You just need to listen.
We are talking about our difficulties, and there are social rules that follow.
When someone tells you they are seriously ill, and will be forever, you don’t say “I get ill sometimes, I’ve had the flu.” You listen and try to imagine how they feel and respond to that.
Autism isn’t an illness, it’s who I am. It’s who I will always be. There are so many things that make it amazing and add to my life, but there are costs too. Those costs are real and they will happen every time the phone rings for ever and ever and ever.
The right response to hearing a behaviour that you recognise? There is no one right response. But listen to what is really being said. I’m telling you this behaviour hurts me. Respond to that.
I’m looking at one tiny aspect of one small thing that might happen in one moment of one day. This is only a bit of my day. It’s a snapshot. That’s how much effort I have to put in to one small thing.
I’m trying to build you a picture, but another aspect of autism is focusing on the detail. I’m trying to communicate in a way that works for me. Most people look at the big picture. So when I’m trying to explain how it affects me, you see:-
Autism = not liking phones
But I’m trying to say:-
One of the ways autism affects me is that I struggle with processing and understanding speech particularly badly when it comes to phones. There are lots of other ways, but this one is quite easy to communicate. Or at least I think it is.
I’ve spent a lifetime studying you. I still don’t get lots of things. I still make mistakes. I won’t be surprised that you make mistakes when you try to understand me. None of us are perfect! Don’t stop trying!
If you can’t think of anything else to say, then just say,
“That must feel really restrictive”
“That sounds exhausting”
“Gosh, Rhi, you really are the most astonishing human I’ve ever met, you’re utterly marvellous and great and wonderful”
Probably not that last one… Probably… Only if you really mean it, because let’s face it, I’ll take it literally.