Susan's Blog

Monday, November 15, 2010

Outsides are not insides

I have these bouts of insecurity, where I compare myself to others and feel that they are higher-functioning than me, that they are doing more, better, etc. I will then assume that they know how mediocre I am because of how I feel. During these times of despair, Ned will say to me, “Don’t judge your insides by other people’s outsides.” By this he means that even though these others may appear to be doing way better than me in one way or another — spiritually, intellectually, physically, etc. — that I may be making the mistake of feeling inferior because of how I’m feeling. But they might actually be feeling as inadequate as I do.

If you look at your own case and say, “I’m so — blah — and the rest of them are so — wow —” then you are guilty of this same thing, because you probably look “wow” to them, too, and who knows how they feel? And who cares, really?

Okay, let me rewind a bit, because if I’m lost, you must be even loster. What I mean is, we have no real basis of understanding a person’s inner life, not really. We have our tools for assessing each other’s mindstate: we have agreed-upon communication, of facial expression, body language, spoken language, eye contact. But all we really have is our own instruments for observation. You can tell me that you feel great love for me, but how do I know how love really feels to you?

What if you did not know the word for the feeling of love? What if you felt maybe a pleasant swelling in your chest, a warmth in your throat, a lifting of your spirit, when I walked into the room, but you did not know what it was called, how to tell me, or even whether to tell me. Maybe you felt it for me but you did not actually connect it to me for some reason.

If you merely looked up when I came in the room and then looked away to think your thoughts, if you had not learned to transfer that feeling into your eyes or mouth, then I could easily assume that you don’t care much about me.

If scientists observe this behavior — the common thinking would then be that you either did not or were not capable of feeling love for me.  If all you ever use is a hammer, then every task you perform had better have a nail.

Yesterday Ned and I were discussing this with regard to Nat.  I made my case over and over and Ned took it and ran with it.  He said, “when we look at Nat and decide that he doesn’t have a theory of mind, we might be gauging his inner mental state by his outward behavior. We may ourselves be guilty of not having a full theory of his mind.”

We may not know how to speak “Autistic.”  We may be dealing with a different culture.  For each individual!

I don’t care if scientists like Simon Baron-Cohen have made observations that prove without a doubt that people with autism have difficulty with Theory of Mind, empathy.  I don’t even care that Temple Grandin is convinced that she can only tell herself what love is, that she doesn’t feel it for people the way others do.  Maybe that’s not what she said, but that’s what I remember reading:  that she did not believe she felt love the way neurotypical people do.

How do they know that?  I think that it is these theories that do us harm.  They create despair.  They create strata between the Mindreaders and the Unmindreaders.  They create a feeling of inferiority based on outsides.  Once I shucked this perspective, I became much closer to Nat, and things started going much better between us.  Do I know why, for sure?  No.  So why not just believe that it is because we are connected?  The heart knows.

You don’t even know how green looks to me.  I will never know if I love Ned more than he loves me.  The other mind is unknowable, autistic or not.  The truth is, either none of us has a Theory of Mind, or we all do.


What an intelligent couple you are. You make a lot of good points.
I, too, need to remember that “outsides are not insides”. Thanks!

— added by Timmy's Mom on Monday, November 15, 2010 at 6:22 pm

Theory of Mind is a load of……. Yeah… crap’s the politest word I can find.

And I can guarantee you… that barely verbal 9yr old who’s brain never stops thinking… Loves Mommy most.

— added by farmwifetwo on Monday, November 15, 2010 at 7:11 pm

I guess I have a different take on Theory of Mind…and it is that Justin thinks in different ways than most people do. He has Aspergers, ADHD and anxiety. He may get to the same conclusion, or not, but he usually gets there in a neurologically different way…and I know this because he is very verbal but has pragmatic issues and is very black and white. He thinks that everyone knows what is in his head and assumes that everyone else is functioning on his level–he is a rule follower, ie everyone else is–but why don’t they act that way? He is extremely compassionate–when he sees obvious outward fear, sadness or need, he is the first to help. In that way, you cannot say he doesn’t have “empathy”; he has an inner energy that allows him to connect with people on a different level…but he does not have “empathy” when it comes to daily social skills…small talk, expressing his needs, knowing when to stop interrupting or talking about his preferred interests…that’s where the “theory of mind”–in my interpreatation comes in…but it is upsetting to me to see how it is written in the DSM and talked about in professional circles…the “pros” still have not gotten it right…in my amateur opinion.

— added by Carrie Noseworthy on Monday, November 15, 2010 at 7:20 pm

Hi Susan, this is a lovely post.

I have never met an individual with autism who had no empathy; that is a terrible misconception out there. At the same time, I have met those with very challenged theory of mind abilities. I only feel like we can know that when we are with someone who is highly verbal and can explain how they think. For example, I have an 8-year old student I’ve worked with for 4 years who has no idea what those around her are thinking about or even talking about unless it’s a topic of high interest to her. My job has been to teach her that in order to maintain a relationship with those friends whom she clearly LOVES and wants to be with, she has to learn to have a conversation about what they are interested in, too. It’s come to an actual crossroads where she is in the process of deciding if it’s worth it to her to learn to think about what they are thinking about – to work on her theory of mind ability to be able to hang out with them successfully – or spend recess alone. This is very separate from the fact that she has great empathy for them and cares deeply for a great many people.

The mind is a fascinating place!

— added by Jordan Sadler on Monday, November 15, 2010 at 9:20 pm

I understood everything up to the point of the assumption I must be “loster”. 🙂

I also don’t make assumptions about other people’s insides, because enough people have laid bare the worst of their insides for the world (or a very carefully selected subset of the world) to see, and I’ve gotten some of those glimpses. People who are suffering from clinical depression. People who are bipolar. People whose brains don’t always (or never) work like “normal” brains. And I make no assumptions that anyone who looks like they have a normal brain actually has one, as a result of getting to know just a few people better that way — enough of them look normal, you might not know what’s going on. Or, if you know, you might not understand.

I have a bipolar friend who seems to get me on some levels better than pretty much anyone else. I’m hoping I get her on some of those same levels. I know some of the same feelings she expresses, not because I’m bipolar, but because of other differences — and really, does the biological basis of wanting to curl up in a fetal position for 14 hours really matter? (She was one of the people who thought my kids actually had a good idea going the morning I blogged I’d had to inform each of them that no, today was *not* “Fetal Position Day”.)

What I’ve found with people who can use words is that talking about thoughts and feelings gives a decent idea of what they’re feeling, if they’re being honest with themselves and the folks they’re speaking with. (If they’re not being honest on some level, eventually it shows, and that’s where the label “crazy” gets applied in my social circles. It’s generally not the bipolar folk labeled as “crazy”.) Those that don’t have the words can be honest in other ways. I know my nonverbal son loves me because he demonstrates it by his actions, and I don’t worry about him ever lying to me with words about that.

And, every time I’ve thought I could make an assumption, something has come back to bite me in the ass. It’s not that every assumption has been overturned, but enough have frequently enough that overall, it’s taught me that I cannot assume.

I just need to remember to listen more, and to ask sometimes.

— added by Julia on Monday, November 15, 2010 at 9:47 pm

Please. Every time my non-verbal, moderately autistic seven-year-old hears me say “ouch” anywhere in the house he is immediately next to me, giving me a kiss, looking me straight in the eyes to see if I’m okay. Still not sure how I feel about T.o.M., but empathy is empathy, no matter what package it comes in. Great post today!

— added by kim mccafferty on Tuesday, November 16, 2010 at 8:34 am

“The other mind is unknowable, autistic or not.” – exactly. Insightful and thought provoking as always. The old “assume makes an ASS out of U and ME” applies to scientists too! 😉

— added by Juniper on Tuesday, November 16, 2010 at 11:41 am

Thank you for your articulate and beautiful writing. I enjoy reading your posts, and appreciate your perspective. Food for thought always tastes good…

— added by Daleth on Saturday, November 20, 2010 at 5:54 pm

So interesting and worthy of thought! I’m always saying to my kids, “You really have no idea of what others have been through, their suffering.” While I was reading your essay, automatically I thought of myself, (I used to gauge my success against others all the time.)One of the great things about getting older is that we get over some of those self-esteem issues that really prevent us from becoming who we are meant to be, or at least living in the moment of the beautiful gift that life is,(maybe that is even the more important.) I also think of the experience of ‘LOVE’. There are basic, sophisticated, and in between definitions and feelings of love. A baby for instance knows if he or she is loved or not by the way we care for them. I think back on my understanding of love as a teenager, romantic and agape, and familial, and certainly my understanding of love now has grown. As a Christian, the ultimate expression of love is one laying down his or her life for another. Our everyday hugs and details of attention we show each other all stem from that ultimate. I am not too proud to even scratch the surface of what my son who is autistic understands of love. He is passive and sometimes too passionate, not articulate, yet he can state a seemingly obvious observation in a very profound, astute way. He once said about people not being perfect: “People aren’t perfect, but they are good.”

— added by Susan Anderson on Tuesday, January 7, 2014 at 7:26 am