You just don’t get it

A few summers ago, right in the middle of my graduate programme, I was hit with Mono and Lyme. Taking a shower was exhausting. I kept falling asleep in statistics classes, and in the lab where I tried to work. Putting thoughts together in any of my research analysis or writing, or even learning new concepts, was like stringing beads while wearing heavy ski mittens.

Even after submitting a letter from the doctor to my department head, he couldn’t understand why I couldn’t get things done, and when he did see me around, why I was staggering around and looking like “death warmed over”. He was of course, operating on the Willpower/ Mind Over Matter principle, where all one really needed was just More Determination. (And this was even in a biological science, where you’d think they would have some kind of clue!)

I got over the diseases. A couple of the most important things I learned from that whole experience were tied to Paula Kamen’s lovely book, All in my head: an epic quest to cure an unrelenting, totally unreasonable, and only slightly enlightening HEADACHE”. One important thought is: “There is a difference between getting cured and getting healed.” Another is: “Acceptance is not the same thing as resignation.”

I also got a crash course in how little empathy some people have in real life, compared to the words that come out of their mouths. Of course, it was hardly the first (or last) time I had experienced such in life, just an event when things were painted with such broad strokes.

Weird thing is, the official word is that autistics lack empathy.  That’s the line, but there are plenty of people who beg to differ.

In an NPR interview, Temple Grandin had this to say about empathy:

Normal people have an incredible lack of empathy. They have good emotional empathy, but they don’t have much empathy for the autistic kid who is screaming at the baseball game because he can’t stand the sensory overload. Or the autistic kid having a meltdown in the school cafeteria because there’s too much stimulation. I’m frustrated with the inability of normal people to have sensory empathy. They can’t seem to acknowledge these different realities because they’re so far away from their own experiences.

Unlike someone with Antisocial Personality Disorder (sociopathy) or Narcissistic Personality Disorder who truly does lack much real empathy, the autistic person does not really lack empathy. Rather, they do not respond in ways that demonstrate empathy in typically recognisable fashion. This is in contrast to those sociopaths, bullies and narcissists that may demonstrate a lot of the shallow social-noise that appears to be sympathetic, but on the deeper level is really more about manipulation to gain something for themselves, rather than true empathy.

Just because someone doesn’t respond in the expected manner, that does not mean they lack the feelings we associate with those responses.

The term “empathy” is one of those words that carries several meanings, and is used in different ways. This conflation of meaning results in things like this issue of the Asperger’s/autistic person being described as “lacking empathy”. Plenty of parents, spouses, other family members and close friends will assert that despite diagnostic criteria, their person “really is loving” and “shows empathy” and demonstrates both passion and compassion.

So what’s going on here with this definition, and in the person?  Things like:

  • perceiving other’s distress
  • identifying the feelings being experienced
  • discerning probable causes
  • being able to identify with such situations

Being able to identify one’s own feelings can be hard because people demonstrate feelings in different ways:

If I don’t react like that other person, does that mean I’m not experiencing the same feeling?

Or, if I don’t react to the same situation in the same way, does that mean I don’t have feelings, or that I’m having the “wrong” feelings?

There are also glitches that can happen in responding to someone else’s situation.  There can be timing issues, especially when auditory processing glitches occurs.  Delays can happen from figuring out what was going on, before going back and responding to the person about the situation.

Sometimes the hitch is figuring out how to communicate that empathetic response.  In a curiously autistic manner, this is sometimes expressed as describing how they had a similar kind of situation, where the emotional response that is in common may not necessarily be explicitly expressed but is inferred. Unfortunately, to a lot of neurotypicals this comes off as being “self-involved” because the autistic person is talking about theirself, when what they’re really trying to do is to connect with you by describing how they can understand and empathise with what you’re experiencing, as they have had similar things happen. It’s just that the response does not use the typical social word-fluff, the stock sympathy phrases. In some ways, this autistic response is more genuine, because it’s coming from personal experience and from the heart, rather than someone responding with trite sayings. But because they are not producing those expected responses, their responses are not interpreted –or perceived — in the same way.

Part of empathy is about being sympathetic — one understands another’s plight, and feels badly for them. Being sympathetic means that one has to recognise what’s going on, and what the other person is feeling. If we have trouble picking up on the sources and types of distress, then it’s hard to respond. It’s not that we can’t tell someone is upset; we’re just not sure why. Sometimes the lack of response is that we have tried to express our sympathies before, but because we’ve somehow done so “the wrong way”, we’re uncertain about how we’re supposed to do it the “right way”.

Sometimes the issue is not decoding or expressing the sympathy, but is about being too empathetic! Some people are almost hypersensitive to others’ moods, and either the pure empathetic stress is so strong that one nearly or does have a meltdown or shutdown, or one is so overwhelmed that trying to communicate the sympathy can be difficult because of the intensity of the feelings being shared. Many children who have AD/HD and/or who are very smart can have this sort of reaction.

Children or students who are described as doing better with those those teachers or therapists who are calm and happy, are usually those who are being very sensitive to their moods. If those children are autistic, descriptions for being “sensitive” as meaning sympathetic or empathetic may not be used; they may be described as being “sensitive” in the sense that they are emotionally volatile and prone to having shutdowns or meltdowns.

The children are responding to the emotions of the people in their environment, but do not have the internal resources to understand, and relate with the person, and cope (more) successfully with the overwhelming input and internal responses. (Having a shutdown is somewhat a more successful coping method, at least compared to having a meltdown. But the person is still being overwhelmed, and unable to function.)

Sometimes people who are so empathetically hypersensitive will eventually deal with this by overcompensating to the point that they try to wall off all that emotional barrage, and block their own like responses. The young child who was an emotional roller-coaster that turns into the stony-faced teen who resists or avoids all the emotional scenes may be trying to cope in such a manner.

Have that child be in a family where the culture of the “microsystem” is highly affective, where the coin of connectedness revolves around the “appropriate”expression and reciprocity of emotional states, and the relationships of the family members with the child will become strained because the person is “doing it all wrong”.  This sort of thing is evident in the “Autism Every Day” video (as described by MOM-NOS), where children are seen hugging their moms even as the women talk about their autistic children never demonstrating affection.  (As Paula Kamen said, “Acceptance is not the same thing as resignation.”)

Just because someone doesn’t respond in the expected manner, that does not mean they lack the feelings we associate with those responses.  If you cannot see that autistic people do indeed have empathy, then possibly you are not perceiving their distress, identifying the feelings being experienced, discerning probable causes, and being able to identify with such situations.

9 Comments

  1. 2 August 2009 at 4:31

    […] before, putting thoughts together was like stringing beads while wearing heavy ski mittens.  But this […]

  2. NTE said,

    18 February 2009 at 15:51

    Andrea, I completely agree about the difference between how empathetic most people think they are and how empathetic they actually are. And I think you make some great points about how differently people show their empathy and how it can be interpreted. Wonderful post!

  3. Kimberley said,

    29 January 2009 at 10:28

    I got Mono when I was in the hospital after a spinal cord injury. It set me back a bit because I could barely stay awake long enough to eat. I was in a haze for weeks, and it’s no fun at all!

    Your post really got me thinking about things. It’s too bad more people don’t view things the way you described them.

  4. 16 January 2009 at 14:05

    […] and Snoopery January 16, 2009 — diddums I enjoyed Andrea’s blog post You just don’t get it. I seem to respond that way to people’s stories… recently a friend was talking about a […]

  5. 14 January 2009 at 14:47

    I agree a million times!!! My son is SO SENSITIVE to the moods of others, and he doesn’t always understand them, and he tries so hard to process and make sense of them!!!! I wish this were better understood, universally, about people (ESPECIALLY kids) with autism!

  6. diddums said,

    14 January 2009 at 12:04

    I do that a lot: show sympathy by saying “something like that happened to me”. Sometimes it’s because when someone says “X has gone wrong in my life,” they will probably feel embarrassed or further depressed if I respond with “how absolutely awful — poor, poor you!” Anyway, I do wonder if I come across the wrong way for these reasons.

  7. Fleecy said,

    14 January 2009 at 1:36

    “Unfortunately, to a lot of neurotypicals this comes off as being “self-involved” because the autistic person is talking about theirself, when what they’re really trying to do is to connect with you by describing how they can understand and empathise with what you’re experiencing, as they have had similar things happen.”

    It was such a nice surprise to see this mentioned and explained so well by someone. I had this problem so long, not knowing why people seemed to think I was being inconsiderate when I was trying to express sympathy in really the most reasoned manner I can think of – the format, “I’ve dealt with something similar and it is not fun.” but it does seem to get taken as “Well why are you talking about YOU now? This is about me!”

    I’m not sure how a person is supposed to express sympathy if not in some conveyance of understanding of the circumstance (isn’t that what sympathy is?). These days I go no further than saying something to the effect of, “Oh, well that sounds unpleasant.” I haven’t found a better way.

    That seems to be a big source of all the negative things people say about autism/autistics. Lack of empathy, no social skill, etc. When it often seems to be more a case of something being expressed differently (or sometimes not expressed if the person doesn’t know a way to express it at all, I’m sure that happens too), but people are looking for a very specific expression of something and when they don’t see it being expressed their way, they think it is entirely absent.

  8. Paula Kamen said,

    13 January 2009 at 23:42

    Thank you, Andrea, for the nice mention about my book! It’s interesting to see what helped you. And I’m glad to now know about your blog…
    Paula Kamen

  9. Patrick said,

    13 January 2009 at 23:41

    I think you have done very well in pointing out that what Some of the people write about their perception of Empathy involving others could be because They aren’t fully aware of how those others are processing inside.

    Sometimes it really makes me sad or mad or upset reading what appear to be clueless interpretation by the diagnostic/research community.


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