Autism and Empathy: A Two-Way Street

by Devon Alley

Today’s Thinking Person’s Guide to Autism post makes some very important points about autism in the media in reference to abuse and empathy. It’s really chilling, the misconceptions our mainstream media tends to promote as well as the language that is used surrounding these stories. It’s terrible enough that incidents such as the ones that Zoe discusses in this article are so prevalent that two of them have been prominently featured as mainstream stories in the past week alone, but it’s even more disturbing that these stories seem determined to defend the viewpoint of the parents.

This post also enlightened me to the Autism Now series, and that Robert MacNeil described autistic people as lacking empathy — and that no autistic people were interviewed for this news series — an issue which Rachel Cohen-Rottenberg addresses quite powerfully in an open letter on her website.

Before I go off on this rant, let me add a disclaimer — I’m not an expert, I can only speak from my own personal experience, and I understand that autism is a spectrum disorder, which means that it affects different people in very different ways. Therefore, there may be other people who have had very different experiences than me.

But, personally — I won’t let anyone tell me that my daughter lacks empathy. Does she lack an understanding of the logical progression of social behaviors that may lead to very specific reactions from people? (i.e. Does she fail to understand that saying something rude might hurt someone’s feelings?) This is definitely a struggle, and something we’ve been working on. A.’s new tactic for dealing with this specific issue, in fact, is prefacing anything she suspects might be construed as inappropriate or rude with “I don’t mean be rude, but….” Which, as far as I can tell, suggests a big leap of awareness in this whole “empathy” social construct that the greater world largely seems to believe my daughter, because she autistic, would not be able to grasp at all.

And outside of the social structures of empathy is the very real fact that my daughter is distressed when I’m distressed, that she wants to make me happy, and that she wants everyone to be happy with her at all times. I remember even before she was completely verbal, if I was scowling or unhappy, she would sit on my lap and push the corners of my mouth up into a smile. When she listens to sad songs, tears start streaming down her cheeks. If something terrible or frightening happens to a character in a film she’s really into, she can hardly stand to watch unless she knows everything will be okay for that character. If a peer at school seems discouraged or upset, she’ll often try to do something small to comfort them.

Is it hard for her to put herself into someone else shoes? Yes, we do still have to prompt her on this sometimes. “How would you feel if we criticized your music? Well, can you imagine what it might be like for us when you criticize our music?” But I think this is a very different thing from generalized empathy and the ability to be concerned for other people. I don’t know exactly how my daughter’s brain works, but I know it is wired very differently from me, and that learning the very complex universe of social constructs has developed in a very different pattern than my own. But I know she shows concern and worry for other people and their feelings, and the disconnect is always in understanding that a specific set of actions or words might hurt someone as opposed to simply not caring if that person would be hurt.

For me, that’s the difference between true empathy and the struggle that autistic people often have with socially accepted displays of empathy. A. may not be able to understand that complaining loudly about her great-grandmother’s house being BORING will likely hurt her great-grandmother’s feelings, but if I’m crying or upset, A. is beside herself with trying to figure out why or what she can do to help, and often she gets upset, too. I’m sorry, Mr. MacNeil. My daughter may tell me that I’m boring or that my music is lame or any number of honest opinions that she has about my life and whatever is going on at the moment, and she may not want to look me in the eyes while she’s doing it, but she is well aware of my existence and my humanity, and there is a beautiful and loving child-parent connection, there — even if it doesn’t look exactly like other child-parent connections, and therefore may be hard for others to recognize.

Please listen, world. My daughter has autism. This does not mean she is an unfeeling robot. This does not mean she has no empathy. It means that her brain works differently, that she acts and reacts differently, and that she has to learn — through social stories, through memorization, through structured teaching methods — how to communicate and navigate complicated social structures, and that until she learns these things, she may sometimes come off as blunt, rude, and inconsiderate. But she feels, she understands, she is a participant in this world with the rest of you, and she needs your acceptance and understanding much more than I, as her parent, ever will. Parenting a child with autism is nowhere near as stressful and overwhelming as being a person with autism.

Really, Zoe says it best: “Every day, autistic people are being murdered and abused by people who are supposed to provide them with love and care. And every day, people tell each other that autistic people are the ones who lack empathy, never pointing out that often, it is neurotypical people who do not have empathy for us.”

If we’re looking to promote Autism Awareness throughout April, the first thing we need to do is listen to — and have empathy for — the very autistic people we’re claiming to raise awareness for.

About the Author: Devon Alley is the mother of a child diagnosed with high-functioning autism. She blogs at From Inside the Puzzle: Raising a Child with Autism. This piece was first published on her blog on April 23, 2011 and  appears here by permission.

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12 thoughts on “Autism and Empathy: A Two-Way Street

  1. Catsidhe says:

    I wanted to comment on one thing:
    [Does she fail to understand that saying something rude might hurt someone’s feelings?]

    From my own experience on the spectrum, may I suggest that you have the wrong end of the stick on this? I submit that she may be very well aware that “Rudeness will hurt someone’s feelings”, but not be able to make the snap judgement as to whether a given statement is rude or not. Certainly that’s how it is for me: it’s taken a long time to learn what sort of statements are likely to be hurtful, and why, and when it is or isn’t permissible to say such things. It doesn’t help when it’s all so context-dependent, where something which is playful banter at one time and place will have the room go silent in shock at another. Combine this with an autist’s binary value judgement: But how can honesty be bad? Wouldn’t you prefer to know, so that you can improve?

    Think of it as if she were colour-blind. She may know that “a red cloth will incite the bull”, but this knowledge doesn’t help much if she can’t see whether the cloth is red or not. Of course, when the bull charges, she will be upset, and the reaction may well be to avoid cloth altogether, as it’s too difficult to figure out, and the consequences of guessing wrong are so painful. (Yes, we know when people are upset at us, and yes it hurts, and as often as not we don’t know why they are upset: it all seems deeply arbitrary and unfair.)

    • Devon Alley says:

      Catsidhe — That’s a great point, and one that I think I’m intuitively aware of but failed to express appropriately in the post. I can definitely see that A. is concerned about saying something that may be construed as rude — why else would she begin so many statements with “I don’t mean to be rude, but…” I can also see what you mean — that it’s more the fact that she doesn’t understand why a certain statement might be rude and why others aren’t. She is, as you say, just giving her honest opinion and genuine reaction. It is pretty crazy that we live in a world where we preach the necessity of honesty yet reward in personal and professional settings those who are the most dishonest and unauthentic. It’s definitely a nuance I need to pay closer attention to, so I appreciate you bringing this up for me.

  2. Alicia says:

    I am autistic, I feel so much empathy, even for people in the news (even movies), that I don’t know what to do, when someone is in pain, I feel pain, and I freeze in that moment.
    There are autistic who don’t feel strong empathy, there are NT who don’t feel strong empathy, people are different, most autistic do feel empathy, most autistic are treated badly, so when seeing others pain, we relate to it.
    Autistic people are awkward to show empathy, we don’t know how to help, so we might look cold for others, specially strangers.
    We I read that autistic/aspergians are like almost like robots, I despair because of it.
    I see NT people laughing when others get hurt, there is a section of comedy that is based on people getting hurt or humiliated, I don’t think is funny, NT people normaly do, should we do a study on NT lack of empathy?

    • Devon Alley says:

      Alicia — I can’t even imagine how it must feel to have so many people telling you that you obviously don’t feel things and must be like a robot. I’m fortunate that my daughter hasn’t had to deal too much with those perceptions yet. I know that she’s absolutely aghast and heartbroken when she hears that people are trying to “cure autism,” however, so I know she’ll have a lot to deal with as she gets older and is more exposed to the world. My heart goes out to you both, and I hope that by sharing my own experiences as a parent I might be able to change in at least some small way these perceptions.

  3. Rachel says:

    I completely agree with Catsidhe’s assessment, as I have experienced all these things as well.

    For me, much of the issue is that I have a huge number of scripts in my head that I call on for different social situations. This is not to say that I can’t respond spontaneously; when I’m dealing with practicalities, or with someone with whom I’m very comfortable, I can and do. But in situations that involve social forms, and ambient sound, and more than one person, and the necessity for coming up with the right response quickly, I look for the script that fits.

    Sometimes, the words may be right, but my intonation may be wrong. At other times, I just pick the wrong script on the fly and realize it a few seconds — or days — later. Both usually come of my senses feeling overwhelmed, sheer nervousness about getting it “right,” auditory delays, and/or having to keep up with a conversational pace that feels uncomfortably fast.

    I’ve also been prone to misjudging whether a person wants an honest response or just wants me to say something pleasant. I’ve seen the same sort of misjudgement in my NT husband when he responds to me, since he will tend toward diplomacy when I really want sheer honesty. Sometimes, I see his hesitation happen; he can just stand there not knowing what to say at all. At those moments, I say “Bob, I never ask a question to which I don’t want an honest answer.” Then, he’ll usually provide one. 🙂

    • Devon Alley says:

      Rachel — I completely understand about the “scripts,” not only from my experience with A. but from my own personal life. I often feel like I have a “bank” of appropriate responses that I can pull from in social situations, and if I’m stressed or frazzled I’ll sometimes say something nonsensical or non-sequitur-ish and will often get odd looks. Fortunately, I’m generally around people who know me pretty well and are used to my “quirks.”

  4. Scott says:

    Alicia’s response is very similar to my own at times. It is not that I lack empathy but that I am so overwhelmed I cannot respond in any meaningful fashion. Other times I simply cannot think of anything useful to say but I still feel. I, like others, have scripts I use in those instances and then try to process the flood of feelings on my own time.

    • Devon Alley says:

      I can definitely tell when A. is feeling overwhelmed. That’s also when she’s most likely to say really hurtful things to people — which I’m fairly certain is just her voicing frustration about emotions she doesn’t feel she can adequately express. That’s when I let her have “time away” alone so she can take some time to process.

  5. fantastic post
    fantastic website

    • Devon Alley says:

      Thank you. I’m really excited about this website. I think there’s going to be a lot of wonderful stories and helpful information here.

  6. tielserrath says:

    Coming a bit late to this, but:

    “A statement of fact is not emotional”

    It took me a while to grasp that people get emotional about facts. Some things were easy to understand – your pet dies, its death is a fact, but death is something people grieve about.

    However ‘I’m bored’ – a fact – is translated by other people as ‘I’m bored with you’, ‘Your house is a boring place’, or ‘I’m just not interested in anything you have to say’. These are interpretations that other people add to a statement I make.

    Grasping the different ways people interpret a factual statement, how they can choose to interpret it negatively and then blame me, took me a lot longer to grasp. And when you’re different, I think people are much more likely to interpret anything you say as negative. You don’t get the benefit of the doubt.

  7. […] articulate or act on it. See these websites for excellent example of collective knowledge in action Autism and Empathy – dispelling myths and breaking stereotypes and Simon Baren Cohen – autism and empathy.  There is now growing recognition by the […]

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