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 be autistic. And it’s not just autistic people, 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 rabbit 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 non-autistic people 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.
Me: …
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”
or
“That sounds exhausting”
or
“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.
Autism and Expectations 
When it dosen’t show on your outside people have troubel “getting it”. I’ve lost count on how many years peoples respons to my chronic disease have been : But you are so optimistic and positive. It can’t be that bad then, can it? What they don’t get is that it’s the only way I can be or I would totaly break down…
I can only begin to imagene that it’s something like that for you as well.
And it’s hard to know who you can tell and who you can’t.
When calling my house you get the “ready to bite your head off” answer if my husband takes the call. Now I know why – thanks 😊
LikeLike
I think it covers so many hidden struggles. I really appreciate you sharing your experiences.
LikeLike
Oh, and you are great and that is meant to take litterally! I’m so glad I found your blogg cause it helps me to understand things from another point of wiev – and that helps!
LikeLiked by 1 person
That’s brilliant! Thank you for sharing (and saying I’m great!!)
LikeLike
Again, thank you. When i wrote that comment on your previous post, i didn’t mean to hurt anyone. It’s just hard to explain, but you do it so well.
LikeLike
You explained perfectly. It helped me get my head around what I wanted to say. Thank you 🙂
LikeLiked by 1 person
Very good post! I have similar problems, and can relate to the above frustrations. I also have trouble responding to attempts at humor, and am not a naturally cheerful person. So, I have trouble responding to people who ask me to smile more, because it doesn’t come easy to me, and they don’t believe me when I tell them that. I guess we just have to roll with the punches and always strive to do better.
LikeLike
Matt, you smile as much as you want to and no more than that.
I think it’s easy for people to assume that what you project is the important bit.
I try to be realistically optimistic. It doesn’t always work out, but it helps me see the good in things.
LikeLike
Yes. When someone says those words to me, I have to decide whether they’re saying, “I’m trying to connect with you” or, “I’m trying to convince you that what you think you’re experiencing isn’t real”. Because I’ve spoken to people from both categories. And either way, it shuts me down.
LikeLiked by 1 person
It’s definitely a clear sign of “I don’t fully understand”. Thanks for your comment.
LikeLiked by 1 person
I feel anxious just reading your posts. A diagnosis may make one feel better, but it brings its own set of issues. I can see you’ve got a husband who loves you. He loved you before “the diagnosis”. That’s more than many NT’s have. Everyone has quirks and fears and self doubt; a diagnosis is simply a label; it won’t explain every little thing; some things just are what they are. You don’t owe one single person an explanation for who you are, nor does a diagnosis itself change who a person is. It’s a tool, not a crutch. It can be used for good, and also as an excuse.
If you have seen a person with autism, well- you’ve seen one person with autism. It is a spectrum, and each person is unique. If you don’t like the phone, find ways around it. My son is awful on the phone, as his language processing flies out the window. He uses TTY relay- works much better for him for appt setting, etc. He texts with friends- as they know and he knows his strength lies in written words. He always has a reference that way to look at if needed as well.
He is comfortable with who he is- thereby others are comfortable around him. If he needs help, or doesn’t catch something the first time- he asks them to do it again, do it/ say it another way so he can “get it” or learn it. He does not want pity, he does not want to be “inspirational”. He doesn’t wear his diagnosis across his chest, nor lean on it for entitlement. As one of his friends says- “If someone doesn’t like D, there’s something wrong with them”. Self respect and self love go much farther than a label ever will.
LikeLike
It’s interesting that you see the label itself as such a negative thing. I wonder why that is. It really isn’t.
I can only speak for me, but for most of my adult life I have not had a label, or any idea that I was autistic. This actually left me very vulnerable and although I’m not going to go into personal details, hindsight show just how negatively it impacted my life at times.
It’s funny you talk about a label being about entitlement, but miss the most important thing, that it is about understanding yourself.
All people compare themselves, it’s a human trait, and it’s vital not to compare yourself to others who are fundamentally different.
I am exactly the same person as I was before the diagnosis. Nothing has changed other than my understanding of myself.
This isn’t about justifying myself. This is about sharing a viewpoint.
LikeLiked by 2 people
I stated a label could be used for entitlement, not that is automatically is. I dislike labels for people, as labels are for soup cans. People don’t fit in defined neat little boxes . People are fundamentally different for many reasons, yet we all are human.
LikeLike
I see what you’re saying, but I think it’s the entitlement that is the issue there, not the label. People who feel entitled to things that they don’t need, will always find an excuse.
A label is an explanation, not an excuse. It can be an enormously liberating thing for the individual. It’s important to know who you are.
It’d be even lovelier if society was completely open to all types of people 🙂 I hope that one day that is the case.
LikeLiked by 3 people
Us NTs are obsessed with relating to the world. Just like a blindfolded person will hold their hands out in front of them to get a bearing on their spacial whereabouts… NTs do this with words to get reference points to their own emotional and social whereabouts
“I do that too” is a learned go-to statement for NTs for feeling out relative emotional positions, and a tool for relating. It’s something we OFTEN say to each other and can almost always be said to further a conversation. Most aren’t saying “don’t feel bad, you’re not so strange after all!”. What they’re saying is “I really DO relate, on some level, any level. Even though our individual experiences may differ, and you experience this problem to a different extent… it makes me feel close to you as a person that we have something fundamental in common!”.
An example conversation: NT1 will talk about huge problems they are currently having with their kid not going to bed on time. During this conversation NT2 is barely listening. Because he doesnt know NT1s kid, he doesnt have an emotional “in” to the conversation. So NT2 scans his brain for a potential talking point that connects him to NT1, makes him care, and makes the story more interesting. NT2 says “my cats do the same thing!”.
No, raising children and raising cats are NOT the same thing, not at all, but it’s all NT2 had so he used it.
As a spectrum, the qualities of autism exist within all people.. just to a lesser degree for NTs. I’m NT and I got fired from my first job because I cryed when they made me use the phone to call customers. These people do relate on some level, to ALL your problems, and are trying to connect. Yes for your sake, but also for theirs.
You say that “I do that too” is a conversation killer. But the way conversions work are as an exchange where each new thing that’s said is piggybacking the previous. “I do that too” is only a conversation killer if you’re dead set on ONLY talking about your differences.
I’m going to make the assumption that perhaps you have trouble with on the fly adaptation? You go into a conversation with a goal or topic, and you have difficulty shifting gears when the time comes?
Navigating conversations and keeping the conversation going is easy for me. Just something I’m good at. It’s all about finding a balance between validation of the other, using relation/connection tools of my own, while still making the point I originally intended to say. For someone like you who’s less savvy in on-the-fly social adjustments, here’s a cheat:
You: I have trouble sometimes, telling when somebody’s lying, being sarcastic, or making fun of me
NT: I’m exactly the same way!
You: isn’t it the worst?
NT: Yeah!
You: What do you hate most?/When’s the last time it happened for you?
NT: blahblahblah
At this point, if you’re still dead set on making your original statement on the troubles you have with sarcasm, you can say…
You: I know what you mean! For me, though, it’s more like blahblahblah.
This allows you to validate the other person, allow them to relate, but you still get to say your piece.
Anyways, damn fine writing and great article. Keep up the great work!
LikeLiked by 5 people
hahaha thanks, kind of nails it for me. I may actually use the little conversation script you’re giving at the end next time this problem comes up for me.
cause it’s true, I’m also autistic, not sure it’s an autism thing, but I do get set on making a particular point and can get confused / irritated if the other person suddenly goes unforeseen (for me) directions.
LikeLiked by 1 person
That certainly resonates with me, I like people to head in predictable directions!
LikeLike
Thank you for explaining that so well. I struggle to get past that well meaning shutdown when explaining what my service dog does for me. I’ve taken to just saying she does “neurological work” and leaving it at that. But I still get well-meaning ppl saying “You’re so lucky. I wish I could take my pet dog everywhere.”
LikeLiked by 1 person
That must be so frustrating. People don’t always understand the difference between a “want” and a “need”. They struggle to see beyond themselves and the way they do things. It can be exhausting explaining over and over 💐
LikeLike
This is wonderful. I discovered your blog through another friend with Aspergers a week ago and I’ve been reading through ever since. My favourite part of this post is “Without seeing your lips move, sometimes I can’t work out the words you’re saying.” It is SUCH a relief to know I’m not the only person in the world who has this happen. I describe it slightly differently – for me, it’s as if I’m typing the words out as I hear them spoken, so sometimes I type something that isn’t quite right, or rhymes, or sounds different to what the speaker actually said. Then I have to ask them to repeat it and they get annoyed with me because I wasn’t listening, of course…
I got my official diagnosis in May this year and I’ve been through the various stages of feeling down, trying to find my place again in the world, and now I’m sort of out the other side. I think. Maybe. I’m lucky to have supportive friends who don’t mind that I sometimes have to say “I know you’re talking to me, but I have no idea what you just said. Can you say it in a different way and I’ll try again please?” Or if I make sounds or meow (I really, REALLY like meowing for some reason. I wanted to be a cat when I was 2.)
I think I’d better shut up now 🙂
Also, if this doesn’t sound really weird, I feel like you’re my friend, or that I want to be your friend, from reading your blog. Thank you.
Carys x
LikeLiked by 1 person
“This” year?! I mean last year – 2017, of course!
LikeLike
I’m so glad you’ve enjoyed it. It always makes me smile to hear some “I do that too!” From someone who does it for the same reasons as me.
I am very touched that you feel like you want to be my friend. I love that autistic people are willing to say it, instead of hoping other people will sense it 😄
LikeLiked by 1 person
I’ve been “me too”-ing through SO many of your posts! I’m restraining myself from commenting on too much otherwise I’d get overexcited and you’d find twenty enthusiastic replies clogging up your inbox! (Also I think I use exclamation marks too much)
LikeLiked by 1 person
😄 nothing wrong with a few exclamation marks! I started this blog half-convinced that the only responses I would get would be “Erm… that’s just you.”
It’s been a revelation just how many people, from so many different backgrounds, have had such similar experiences. Quite incredible.
LikeLiked by 1 person
Thank you for helping me understand. I made a post/video on my blog about the unhelpful things people say to those with mental illness and some of the things are very similar but some are different. I have learned from you that a big difference is autism isn’t an illness so not to focus on empathy. Thank you so much for all you are teaching me.
LikeLiked by 1 person
There is a lot of crossover in the things people say when they don’t understand something.
Thank you for taking the time to listen 💐
LikeLike
Two of my children are diagnosed as being in the autism spectrum. I’ve sometimes wondered if I myself am there. I’ve taken online testing, which I know cannot diagnose but it can be helpful in figuring out why one is the way they are. The tests suggest I may well be in the spectrum, but I cannot afford to go for official testing. (My kids got testing done for free, covered here in BC by the medical system when they were under a certain age. I don’t think it’s covered for adults.)
Not that anything can be done about the way one is, and not that there is anything wrong with it in the first place, but somehow it is comforting to know there is an explanation for why one is the way one is.
About this part:
“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?”
My answer to that is it’s scary to risk rejection if the person with whom I’d be being blunt really doesn’t like me. Honesty is great, but the risk, for me, would tend to keep me silent and wondering.
I enjoyed your writing here. Sounds like you have great skills in organizing your thoughts.
LikeLiked by 1 person
Thank you so much for your thoughtful comment. You’re right that it is scary to risk rejection. Testing is such a personal decision (and so often a financial one too). I know many people find they don’t need a formal diagnosis, they just use the information that they likely are autistic, to understand themselves better. Thanks again 💐
LikeLiked by 1 person
The three words that stood out for me in this post are “explaining is exhausting”. It’s a certain type of explaining. Explaining facts to my students is not exhausting, but explaining neurological differences is exhausting in a way that often makes me just not do it, because that’s easier than going to all the trouble of doing so, with no guarantee of it being understood!
LikeLiked by 1 person
So true!
LikeLike