the double empathy problem

(this one is pretty disjointed! it’s kind of a story sandwich with some explanation in the middle and a wrapup at the end. it also goes back and forth between first and second person. I wondered if it needed reformatting but ultimately decided this is how I want to tell it. also I talk about people a few of you may know, so I didn’t post it online for privacy reasons. thanks.)

One.

Your group chat is talking about autism.

This is, of course, your doing. You’re that guy now, the guy who says, “This thing you just described as weird is pretty common among neurodivergent people.” The guy who says, “That’s actually a popular misconception about autism; the truth is…”

More specifically, the topic in your group chat is people figuring out they’re autistic later in life. You speak briefly of your experience, a few people talk about theirs. Then one person says, “I have suspected I was mildly autistic, but I don’t think that can be true because I really do care a lot about the world.”

You let it go in the moment.

YOU LET IT GO IN THE MOMENT, and you are very proud of yourself because you are not a “let it go in the moment” type of person and what you really wanted to say was, “That’s actually a popular misconception about autism…”

That’s Actually a Popular Misconception About Autism

Autism does not have one specific medical cause. It’s a neurodevelopmental disorder, and definitions of it usually comprise a list of behaviors observed by medical professionals. The list includes:

• Restricted interests and repetitive behaviors

• Making little or inconsistent eye contact

• Appearing not to look at or listen to people who are talking

• Having difficulties with the back and forth of conversation

• Displaying facial expressions, movements, and gestures that do not match what is being said

• Having trouble understanding another person’s point of view

• Difficulties adjusting behaviors to social situations

The medical professionals who observed and recorded these behaviors were not autistic themselves, but they watched autistic people and evaluated how their behaviors and movements differed from those of normal people.

You may already see the problems with this framework, but in case you don’t: imagine you have come down with a cold, and someone asks you to describe it. You say, “I have a runny nose. My body aches. I keep sneezing. My head hurts and there’s pressure building up in my sinuses. My throat feels scratchy.”

Now imagine you’ve never heard of the common cold, but someone with a cold is standing in front of you and you’re asked to describe their appearance and behavior. You say, “They keep sniffling and blowing their nose. They look tired. Their eyes are glassy. Their nose looks a little chafed. They sound congested when they talk.”

Your description isn’t very comprehensive, is it? It leaves out all of the symptoms that can only be felt by the person who has the cold (the scratchy throat, the aches, the sinus pressure), and emphasizes ones that don’t matter as much (red nose, glassy eyes, tired look, voice). Using only your description of the common cold, treatment of it might focus on getting the person’s nose skin back to normal.

Now think again about the autism diagnosis, the list of behaviors observed by doctors who didn’t ask the autistic people in question about their experiences.¹ How different do you think the behavior as observed is from the behavior as experienced by the autistic people? Potentially very different. Add to that the extreme subjectivity of what constitutes “normal” behavior in the first place (and who gets to decide what’s normal), and we’ve got a very flawed definition of autism.²

You’ve heard before that autistic people have no empathy? That they don’t care about anything outside their own little worlds? That they don’t want to interact with people? Well, what if we assumed those things not because they’re true, but because autistic people simply show empathy, care, compassion and interest differently?

This is what’s known as the double empathy problem, which states that autistic people feel and display plenty of emotion, they just do it in a way that’s not as understandable to non-autistic people, and vice versa.

A minor example of how the double empathy problem manifests itself is in the way I like to have a conversation. Yes, I do ask my friends and family how they’re feeling when they’re ill, I ask them how their new job is going, ask them about things I know have happened to them recently. But when conversation really gets going, I tend to take the ball and run with it, especially with people I know well. I’ll bring up a topic I feel like bringing up, talk about something that happened to me, or generally just chatter away, ready for the other person to take the ball from me and run with it themselves. Then it’ll go back and forth like that, each person taking the ball when they think of something to add to the conversation.

Imagine my surprise when my friend Anne told me that she holds a conversation by asking the other person questions about themselves. By asking a question she tosses the ball to the other person, they’re supposed to answer it and then throw it back by asking a question of her, and go back and forth like that. I said, “if the other person never asked you anything, would you just keep asking questions of them until the end of time?”

“Yes,” she said. “I don’t want to talk about myself.”

As I’m sure you can imagine, this difference in how I converse makes some interactions pretty awkward³ for people I’m talking with.

You know that piece of advice everyone gives for dealing with a person who is upset about something? “Even if you want to tell a related story to show that you understand what the upset person is going through, do not tell that related story to that upset person! It is very selfish to tell that related story and make it about you!!!” This is advice by and for non-autistic people. I take this advice and follow it because I don’t want to come across as selfish.⁴ But not only am I a person who wants to tell that related story to that upset person, when I am the upset person I want to HEAR that related story.

The double empathy problem as it shows up in conversation also keeps me from getting some of my emotional needs met. When I am feeling ill or depressed, people text me and say, “How are you feeling?” From most people, I hate this question. It’s boring. It’s rote. It often feels insincere. If I want to talk about how I’m feeling I will bring it up!

Instead, when I hear from my friends and loved ones, I want it to be because they have something to SAY. I feel so much love for the people in my life when they do or see something that makes them think, ALISON HAS TO HEAR ABOUT THIS! and they rush to their phone to tell me about it. When they do that I feel like I’m a part of their life. I feel seen and known. I feel like I exist in the world.

The shortcut phrase my therapist and I have for this situation is, “omg there’s a bee in my room.” As in, “I don’t want people to text me and say how’s the job search, I want them to text me and say omg there’s a bee in my room!” Another way to put it is: I don’t want to be centered, I want to be valued.

If telling the related story to the upset person is a 5 on the 1-10 scale of Considered Rude, texting “omg there’s a bee in my room!” to someone who has spent 2024 being passively suicidal is probably a 10. And yet that is what I want. Next time I tell you I’m depressed, please don’t ask me how I’m feeling, just tell me there’s a bee in your room or text me a weird picture of Rhys Darby, ok? Thanks.

Two.

You’re over two years into the pandemic when your best friend’s husband dies of a heart attack.

He collapses on one of his daily jogs and is rushed to the hospital, where he’s in a coma for a month. But ultimately his heart had stopped for too long, and he never regains consciousness. He is 36.

You don’t know how to process this. It shouldn’t be happening. Somehow everyone who knew him has ended up in the wrong timeline together, a timeline where a 36 year old father can just die for no reason.

You and your best friend had been having problems before this happened. The last thing she said to you was a comment on one of your posts in an online group space you shared, in which you lamented that you didn’t have anyone to hang out with. Her comment said simply, “ouch.”

But that doesn’t matter now. During the weeks she’s at the hospital with her husband, you check on her constantly. You offer food. Groceries. Chores. Cat care. To drive her daughter to activities. She refuses all of the offers of help, from you and from everyone.

You talk about this with a mutual friend, expressing sadness that your friend is turning down all the offers of help. You get a surprised look in response. “We’re gonna do that stuff for her anyway!” your mutual friend says. “Even if she says no!”

You don’t really understand. Why would you do something someone said no to?⁵

Your friend has been saying over and over how much her husband would hate everyone seeing him in his hospital bed, especially people he wasn’t close to. You text your friend and say, “I know you’ve said Daniel would hate to have people see him like this, and I want to respect that. But I’d like to come visit you if you’re up for it.”

“I’d love to see you,” she says. “Let me get back to you about when it would be.” But she never gets back to you.

After the funeral, you keep checking in. You send her silly memes, you offer help, you keep her up to date on the gossip, you meet her for walks in the park where you take the conversational ball like you normally do, unsure if she wants to talk about it or not. You know you wouldn’t want someone to ask you, “how are you feeling?” But your instincts are often wrong, so you decide to ask her directly.

“So,” you say, “I’ve been defaulting toward acting normal because I think that’s what I would want in this situation, but I know that might not be what you want. So I wanted to make sure you knew I’m good to talk about Daniel or about how you’re feeling or anything else at all. I’m here for whatever you want.”

“I don’t want anything,” she says.

“Okay,” you say. You take what she says at face value (you take everything people say at face value) and continue as you were: checking in, offering help, keeping her up to date.

Later she complains online about an unnamed friend, saying “how can you have such a good handle on your own emotional landscape but no idea how what you do and say affects other people?” She’s told you before that you have a “good handle on your own emotional landscape,” so you figure this is you and you said something that upset her. You wonder what it was. You decide not to ask.

She posts about other issues she has with the way people are handling her husband’s death. She’s dismayed by people who didn’t come to the hospital. She doesn’t like when people “center themselves.” She hates when people act like Daniel never existed.

You know at least some of these are you as well. As usual you’ve violated some secret rules you didn’t realize were in place. You’ve tried so hard to be a good friend, but yet again you’ve been the bad one instead. The whole world feels like it’s talking to you in a foreign language, one that it assumes you’re fluent in, and it’s furious that you don’t understand.

Eventually you have an anxiety attack every time you see that she’s posted something online, afraid that you’ll hear about another thing you’ve done wrong. You leave the online space for awhile, and you let the friendship fade. She does the same, taking your mutual friend group with her.

What Were My Other Options, Really?

It’s taken me a long time to decide what I think happened and why, and to get to a place where I don’t feel like the worst person on earth. Here’s how I see it now, over a year later:

• Many of the problems my friend and I had before her husband died stemmed from our different communication styles.

• Right after she became a widow was not the time to bring that up. I won’t say I can read every room out there, but I can read that one.

• It would’ve been better if she had told me directly how she wanted to be cared for, but we don’t live in a world where she was going to do that. She might not even have been able to say how she wanted to be cared for.

• Her grief did not make it my responsibility to read between the lines of all her posts and change my behavior based on what she said.

• It’s okay that I left because I didn’t feel safe. Nobody is going to take care of me except me.

• I did my best to be a good friend by treating her how I would want to be treated and asking her what she wanted me to do, and I couldn’t have known in advance that this wouldn’t work for her.

• The group of friends I was in had a collective expectation of what Care For Your Grieving Friend was supposed to look like. The part of me that is still a little bitter thinks that expectation is passive aggressive and gendered.

• I don’t think I belonged in that group in the first place.

My conclusion is that as an autistic person, I care a lot about the world and my friends and loved ones! I may not feel other people’s feelings but I have sympathy and compassion! But sometimes when I’m trying to meet the emotional needs of people who are very different from me, my efforts are not only not recognized, they’re received the opposite way as I intend them. Just as people who text me to ask “how are you feeling?” would be horrified to know that I’d prefer it if they sent me this:

Footnotes

1. Yes, some autistic people are nonverbal. But not ALL OF THEM.

2. For a definition of autism from an autistic perspective, see the Devon Price quote from my first post.

3. My theory is that neurodivergent people experience more awkwardness in the course of their lives than neurotypical people and thus become immune to it. I could not care less about making things awkward anymore.

4. This is an example of autistic masking.

5. It was 2022 and I had not yet learned I was autistic, nor had I learned that not everyone goes around saying exactly what they mean all the time like I do. When I say I don’t want something but people do that thing anyway, it makes me feel like my boundaries aren’t respected, so I try very hard to comply when people say what they want.

General Notes

Again I will recommend this fantastic YouTube video about autism self-diagnosis: TikTok Gave Me Autism: The Politics of Self Diagnosis. OH SHIT DID YOUTUBE GIVE ME AUTISM!!!!

As always, emails and comments are appreciated. Thanks.