Question: do non-autistic people really not have a stream of consciousness that sounds like this? It wears me out.
Thoughts about empathy have been swirling around my head for weeks, and I’ve been wanting to write something about it. . . but this is a topic that could easily be researched for a dissertation. Instead of trying to write a cohesive essay I’m just going to catalog some thoughts here.
I instantly become defensive when people talk about autistics and their ability to care about others. I have reacted this way for years, even before I considered myself on the spectrum. For example, at a meeting a coworker was talking about her brother who has Asperger’s, and his reaction to someone close to him dying. I can’t remember what she said verbatim, but the gist was, “He didn’t really seem upset about it. They just don’t make that connection with other people. He didn’t want to talk about it.” Without pacing the room and waving my arms around and shouting, “I’m autistic, too! We are human! We have emotions and love people!” I quietly tried to bring a little perspective. I suggested that perhaps he didn’t seem upset because people on the spectrum often don’t understand and express their emotions the same way neurotypicals do. I added that funerals and the like can be really uncomfortable situations, with all those people crying and putting out negative vibes and maybe he was struggling to deal with that, rather than showing his own grief in a recognizable way. I also suggested that individuals with Asperger’s are often logical people who want to fix things, and he might see talking about the situation as pointless because “What good will it do?”
I think one of the problems is, how do we define empathy? I have Tony Attwood’s book Asperger’s Syndrome (1998) on my shelf, and I pulled it down to see what he had to say about empathy. A search via the index gave me this (p 55, 56):
The original list of features for Asperger’s Syndrome includes the comment that the child lacks empathy. This should not be misinterpreted as meaning that the child completely lacks the ability to care for others. It is more that they an be confused by the emotions of others and have difficulty expressing their own feelings.
But wait – isn’t “caring for others” what most people are thinking of when they talk about empathy? I get the sense from things I read/hear that a lot of people think that autistic people don’t care about the feelings of others, that they’re unfeeling robots. The almighty Wikipedia says, “Empathy has many different definitions that encompass a broad range of emotional states, such as caring for other people and having a desire to help them; experiencing emotions that match another person’s emotions; discerning what another person is thinking or feeling; and making less distinct the differences between the self and the other.” (emphasis added) Clearly people on the spectrum don’t (as a whole) lack the ability to care for others and want to help them. It’s the other aspects of empathy that can be difficult, like “discerning what another person is thinking or feeling.”
It seems like this “lack of empathy” (or perhaps we should call it, “misunderstanding others”) isn’t reserved only for autistics.
This author says it well:
I think it’s important to draw attention to the fact that this lack of understanding goes both ways. I find that when people on the autistic spectrum fail to understand someone’s reaction, this is seen as ‘lack of empathy’ – but, when someone who is not on the autistic spectrum fails to understand the reaction of an autistic person, this is seen as a case of ‘autistic people are a puzzle’ and a justification for representing us as a jigsaw puzzle piece. These double standards are unhelpful. They place all responsibility for lack of understanding on the autistic person, and create a divide between those who are on the spectrum and those who aren’t.
Rachel Cohen-Rottenberg states in her Critique of the Empathy Quotient (EQ) Test:
After all, if the statement about intuitively reading awkwardness or discomfort assumed that the respondent were looking at an autistic person, the results would come out quite differently, for two reasons: a) autistic people stand a better chance of reading one another’s signals properly, and b) non-autistic people usually find it very difficult to read autistic people’s signals properly.
NTs may be better at reading NTs than autistics are, but autistics are better at reading other autistics than NTs are.
I believe this is one of the reasons I am a good TSS. Often I’m more likely to accurately guess what’s going on in my clients’ heads than even their caregivers are. Here’s one example:
A young autistic girl was screaming under the kitchen table while I talked with her mom and her BSC. She hadn’t yet been given her medication. When her mother directed her to take the medication she refused, and so the mom told her to stand in time-out (a spot in the kitchen with us). The girl stood there for a minute but then went over and closed the sliding-glass door that led outside. Her mother yelled at her for leaving time-out. I told the women that I heard a car drive past right before the child closed the door, and maybe that was the antecedent. The BSC agreed that the girl was probably over-stimulated and the car was extra loud to her, even though the two other women hadn’t noticed it. The mom then stopped reprimanding the girl, and after getting her to take her pill she had her go to her quiet bedroom to calm down until it kicked in.
As a bit of an aside, here is a beautiful post that may help you empathize with the sadness of someone with AS – “10 Things Not to Say or Do When I am Sad.”
A wonderful example of NT/AS misunderstanding was on “The Hofstadter Insufficiency” episode of The Big Bang Theory. Starting at minute 1:45 in this video, Sheldon shares something personal with Penny.
Imagine a row of people watching an emotional movie, such as the recent version of Les Mis. Three of them are crying, and one isn’t. Would you assume the first three are feeling empathy for the character singing on-screen, and the fourth was cold and unfeeling? Maybe.
The first person is thinking about the character’s situation and feelings, and she’s empathizing and feeling their emotional pain.
The second is crying because the song was a favorite of his late mother, and he’s grieving for his loss.
The third is having memories of her own past hurts stirred by the words of the song.
And then there’s me. I’m literally thinking, “This is a really sad song. I can’t imagine how horrible it would be to be in her situation and feeling all of those things. And if I let myself think of her sadness or my own past heartaches, I will cry. I hate feeling negative emotions, and I HATE crying in public. . . so I’m putting up the wall. Look at that – they’re using a really narrow depth of field. Why don’t they keep his eyes in focus? That’s Photography 101. Obviously they’re doing it on purpose, but I really don’t care to stare at this guy’s nose-pores. This is weird.” And I focus on the cinematography and random details for the rest of the film.
The empathy issue was actually the biggest reason I thought I wouldn’t qualify for an autism diagnosis. I’ve always felt *too* sensitive to the emotional states of others, as well as their hidden feelings at times. In Rudy Simone’s excellent book Aspergirls, she says that women with AS can have heightened “psychic sensitivity” and can sense things like others’ true intentions hidden behind their outward appearance and words. Tony Attwood mentions this as well in this forward. And in this post on the topic, Tania Ann Marshall even cites the Highly Sensitive Person website that helped me so much in college. In these cases, it seems like women with AS are using this “sixth sense” to compensate for not being able to read people the same way neurotypicals do.
Here are two posts that talk about people with AS feeling too much empathy:
In my readings and wanderings, I also came across Aspies who fought against the push to say autistics don’t have an empathy problem.
Here’s a very short one – “Stop Making Value Judgements about Empathy Please”
“The Empathy Conundrum“- I’ve mentioned before that I’m a big fan of the Musings of an Aspie blog. I really appreciate this post, and it gives a good balance to the discussion on empathy. In fact, re-reading it now I feel like she has much better things to say about empathy than I do, but since I’ve already typed up most of this post I’ll keep it.
One day I was reading a link someone shared on facebook, and on the side of the page saw a link to another article titled, “10 Symptoms of Asperger’s Syndrome.” Feeling a little trepidation about what might be said regarding AS, I clicked the link. The third symptom listed is “Inability to Empathize.”
Individuals with Asperger’s syndrome may find difficulty empathizing with others. As they age, the affected person will learn the accepted social response for interacting with others. While they may react appropriately and say the “right” things, they may not understand why the other person is truly upset. This can be an issue in childhood as the individual with Asperger’s may play too roughly with their peers or say cruel things, unknowingly hurting the other person. When confronted for this behaviour, the child may respond that what they said was true and they do not understand the issue.
Oops. I recently made an off-hand comment online that caused a dear friend to cry; that was definitely not my intention, and obviously I couldn’t see how it would upset her, or I wouldn’t have posted it. And I can’t tell you how many times (both growing up and even in the past few years) I have said something to my sister that really upset her, and my mom would reprimand me and have to explain to me why she was upset. Usually my first reaction in those situations wasn’t to feel sorry – it was to feel frustrated and annoyed that she responded that way, because I “couldn’t see what the big deal was.” Especially if I thought I was just stating a neutral fact.
Maybe I have a problem with empathy after all.
A lot of posts I write will inevitably be focusing on the things about Asperger’s that make life difficult; after all, the diagnostic criteria are based on deficits (for a positive spin, read Discovery criteria for aspie by Attwood and Gray). So here I wanted to share something that brought me great joy.
At the beginning of my “Emotional Overload” post I told you that I had sent my favorite band a link to the blog post I wrote about naming this blog after one of their songs. And I shared that I got a little notification that Charlie from the band “liked” my post; I appreciated so much that he actually took the time to read it.
This past Friday Dad and I drove 5 hours to Columbus, OH to see Jars of Clay yet again. Normally we don’t go that far just for a Jars concert, but I had never been to one of their Christmas shows and I got a deep desire to go. . . and my dad never says “No” to a concert. Music is an aspie-fixation we share, and we’ve built a lot of wonderful memories traveling to shows together over the years.
We gave ourselves a large time buffer for the trip and made great time, so we arrived about 2 hours before the Meet and Greet was scheduled. The venue served food in the front, and as we were about to sit down at a booth Charlie saw us (before we saw him, this time) and came over to say hi. I thought to get a picture.
He was supposed to be heading back for the sound check, but he talked with us for a few minutes about the tour, answered Dad’s question about shooting a music video in the Philippines, and listened to Dad’s story about one of my first concert experiences. Then he turns to me and says, “Oh, and I really liked your blog, by the way.” *invisible internal happy-dance*
While Dad and I ate our early dinner we listened to the band run through “Loneliness and Alcohol” for their sound check, and I was feeling so extremely happy after that interaction that eating was almost upsetting my stomach.
We had a nice time exchanging a few words with the rest of the band at the Meet and Greet, and Jude kindly rounded up the guys for a group photo. They also graciously signed a set-list I grabbed from the stage after the show.
Dad and I were able to stand right up front against the stage – it isn’t the best for sound balance, but it’s just so much fun! This is what it looked like:
Years ago I had recognized that my love for the band was bordering on obsessive (creating a website, being highly active in the wonderful Jarchives community, etc) and I consciously toned it down; I didn’t know at the time that it was an Aspie “special interest”/fixation, but I knew that things like stalking are socially unacceptable. 😉 But any of you who are on the spectrum will know how important special interests can be, and so you will probably understand why I had such a wonderful, joyful day. Dad and I used to get excited when we could tell they recognized us from the many concerts we had attended; thinking of Charlie coming over to chat with us and bringing up the topic of my blog post truly warms my heart. If you haven’t yet, I encourage you to check out their music. You can even download some for free on NoiseTrade.com.
The school cafeteria is loud. The gym at recess is loud (especially when it’s divided in half and they’re all crammed together). In these settings the young autistic boy I work with often covers his ears. Last year we had him sit beside the cafeteria wall to reduce the noise, and right after lunch we’d go to the sensory room for 15 minutes. I always appreciated getting that break, myself! If we were having a particularly rough day I’d sit on the beanbag with the weighted blanket, not even caring that it amused my coworkers. (As an aside, I love the one I have at home – I got it from DreamCatcher Weighted Blankets).
For a number of possible reasons the cafeteria seems louder this year, and we usually go to recess right after. . . which means I’m feeling overstimulated and irritable right along with my client. Another woman who sits with us at lunch started wearing earplugs, and I kept saying I needed to remember to bring some, and we talked about options that my client might tolerate. Of course due to memory issues (like those described here) I haven’t remembered to bring any in. Today this kind soul had an extra pair and let me have them. Which was good, because I was already feeling overly sensitive today – I couldn’t even wear my ponytail properly-tight because I could feel individual hairs being painfully pulled.
As soon as we sat down I stuck those little foam plugs in my ears and felt so relieved. I could still hear what was going on around me, but it felt like I was in a protective bubble. I noticed I was able to breathe easier, and when we entered the gym 15 minutes after lunch I instantly stuck those suckers back in. She tried giving my client a pair and he wasn’t able to tolerate them, but we’ve got to find something for him. I’m thinking he’d be ok with something like earmuffs – they may not be quite as sound-blocking, but it would still help! I know I’ll be using earplugs daily.
One of these days I want to take a decibel meter to work with me. I wonder if anyone I know has one I could borrow. . .
Holidays can be stressful and emotional times for everyone – having Asperger’s usually makes it worse. I just experienced my first family get-together since my self-diagnosis, and the self-awareness and respecting myself really helped.
Ten years ago, when I first discovered that I was a Highly Sensitive Person, I often used “holidays at Gram’s” as one of my anecdotes to explain to people what it meant. Like this:
When I was little, we’d go to my Gram’s house for holidays. And at some point I’d suddenly tell my parents that I wanted to go home. Mom would say, “Okay, we’ll go in about half an hour.” And I would feel panic and even want to cry. I never knew why. I often liked playing with my cousins, I always liked visiting my Gram’s, and I knew that I was being “unreasonable.” But in those moments, I wanted to go NOW. I’d repeat that I wanted to leave, but I couldn’t articulate that I needed to, because I didn’t understand it. Instead I’d usually go in one of the unoccupied bedrooms and wait there. Now I understand that I was overstimulated, and I had reached my limit – as suddenly as if a switch was flipped.
We’d walk in the door and my senses were assaulted. Food smells, sounds, people moving around. I would also be physically assaulted – aunts with jangly jewelry, powerful perfume, and greasy-makeup-cheeks; uncles with scratchy mustaches; and a swarm of little cousins – all trying to hug and kiss me. I would back up; I would run away; I would squirm; I would actually punch them. They thought it was funny. Sometimes a relative would refrain from trying to grab me and voice that they knew I didn’t want to be hugged, but I often felt bad about that. The thing is, I crave physical touch. It’s one of my main “love languages.” But like most autistic people, I only want it on my terms.
I often felt like I didn’t fit in with my cousins. Not knowing about Asperger’s, I came up with several theories over the years, such as:
I live farther away.
We have nothing in common.
Those were all valid reasons why I felt different. . . but it doesn’t look like I have any aspie-relatives on that side of the family, so I faced the same social divide that I did with my non-blood peers.
At family gatherings – as well as at gatherings with our family friends – I’d frequently wander between the kids and the adults. I’d try to interact with my peers, feel bored and/or left out, and then go hang with the adults until they started talking about boring adult stuff (like people I don’t know). I might wander back and forth a few times or go find a quiet place to read or play my GameBoy. I always loved it when an adult like Aunt E. would pay me some special attention and make me feel less alone. If I was really lucky I would have a friend along; my parents were awesome about letting me take a friend (or two or more) to practically everything. Despite my social deficits I was blessed with some really loyal, understanding friends over the years. Holidays and other events were always easier when one of them was around.
So back to this year. . . we had Thanksgiving out at my pap’s hunting camp. I asked my mom ahead of time who was planning to be there. I had been out to the camp for Thanksgiving ten years ago, so I had memories of what to expect. When we arrived I dutifully gave hugs and made some effort to join conversations, then sat on the couch for a bit and played a few apps on my phone (no service out there, so I was stuck with offline games- mainly a crossword puzzle app and Flow, which felt rather “stimmy” ). I interacted when spoken to and occasionally joined back in when there was a conversation that interested me, but I didn’t push it. I respected that I have a limited number of spoons for social interaction and didn’t make myself feel guilty for taking breaks. I was still in the same room, after all. I interacted a bit with my cousin’s 1-year-old and took some pictures. And after eating our delicious dinner I sat at the table and had a good conversation catching up with a few people. I had respected my limits, and my relatives were all social in a non-threatening way, not saying anything about me occasionally sitting quietly by myself. At one point I thought, “I’d like to go home now,” but I didn’t bother saying anything because I knew I could last a little longer. The switch had not yet flipped. Success.
So fun! I love that it has a simultaneously lighthearted and down-to-earth tone; he includes both the positives and the negatives without overly dwelling on either.
This is another great piece in the same vein as my last post. I was going to pick a line or two to quote, but I couldn’t decide! Just go read the whole thing 🙂
After reading the Musings of an Aspie post that led to my self-diagnosis, I read several more of her entries. This is one I read with a special hunger, because I too was labeled “gifted” as a kid and we didn’t know I had Aspergers. Unlike Cynthia Kim, I didn’t have a great gifted program at my school. I was in 1st grade when I received the diagnosis and the next year I was thrown in with some older kids (scary!) for the weekly activities. (If I recall correctly I was the first one in my grade to go, but one other girl may have started at the same time.) I only have two clear memories of the program. The first is building towers with straws in the library; I was frustrated when we were done and I saw the superior techniques the other kids had used. The second was using an SLR camera. We were given note cards saying what we were to photograph, and mine said “blacktop” – I was super embarrassed when I had to ask the teacher what it was and she told me I was standing on it. Today I asked Mom a few questions to check my own memories of the timeline. She said she talked to my 2nd grade gen-ed teacher and they agreed that to me it felt more like a punishment, so they let me quit the program.
In fifth grade a went to a different school (I was bored; they promised I could work at my own pace; they lied). I enjoyed the gifted program there, mostly because I had a crush on one of the boys. When I returned to public school the next year I continued in the program. From what I recall the teacher was pretty cool and really nice to me, but my peers. . . well. . . they were all girls, and at this point the bullying and social awfulness had started (and in junior high the gifted class ended up being one of my worst settings socially). But that’s a topic for another day. In 9th the teacher who normally had the gifted kids for a period was ill, and the sub didn’t do much with us, so it was basically a fun study hall. That was my last experience with the gifted program. Junior and senior high were academically better for me because there were accelerated and AP courses to take.
Back to the post titled “The Doubly Exceptional Child Grows Up.” I hope you’ll read it in its entirety, but here are a few of my favorite key quotes:
Adults wrote off our quirks as a byproduct of our intelligence. They sent us out to the playground and expected us to figure out how to navigate the social minefields that lurked within kickball games and jump rope circles. We were smart. We would get it eventually.
This is a bit like taking a kid who’s a good baseball player, throwing him in the pool, then being surprised if he sinks like a rock. What do you mean he can’t swim? If he’s athletic enough to hit a baseball, surely he’s athletic enough to swim.
When you arrive in adulthood lacking the social skills that most people have mastered by sixth grade, life becomes exponentially more confusing and hard to navigate. For much of my adulthood, I’ve had the odd belief that someday I would “grow up” and suddenly feel like an adult. That I was just a little behind the curve when it came to social skills and one day everything would magically fall into place.
A final note for today about giftedness. When I was in college, I took as an elective an education course titled Psychology of the Exceptional Child (special education). Our wonderful professor put the bell curve up on the board, and reminded us that two standard deviations below the mean on an IQ test meant a child received an MR diagnosis (now Intellectual Disability) whereas children two standard deviations above the mean were labeled Gifted. Children in the first group generally spend most of their school day in a special classroom, and children in the second group spend maybe an hour a week in a special classroom. Yet the second group is just as different from their typical peers as the first group is. That kinda blew my mind, and it helped me feel a little more understanding towards myself. It also helped explain why I felt so very different, though I hadn’t yet discovered the biggest missing puzzle piece.
Hmm. I wonder about the percentage of people at the right end of the bell curve who are also Aspies. Let’s research. . . first interesting Google result- here’s a great article about Gifted children with Asperger’s Syndrome – it includes a chart showing some differences between Gifted and AS kids as well as some strategies for helping the AS kids. I’m heading down a rabbit trail and have “real life” stuff to work on today, but I’d love to look into this more. If you have any thoughts or research to share, leave a comment!
Change, you say? My dad and I respond this way:
We quote it often. In fact, I got this text from my dad this morning while I was at work – “We fear change. But I think you’ll like it.”
Ominous, isn’t it?
By the time I got home to the empty house I had completely forgotten about his text. I was heating up some food for dinner, and while it cooked I opened the cupboard to retrieve a small glass for my grape juice.
Those are not glasses. Those are mugs. They belong on the left side of the sink. This is the right side of the sink.
Cue a short spell of hyperventilating, hand-flapping, and pacing, all while processing – “AHHH CHANGE. It makes sense. That’s above the coffee makers. BUT IT’S NOT THE SAME. The other cups are now beside the cupboard that holds Mom’s tall glasses. It makes sense. IT’S NOT OKAY. It’s logical. It’s practical. BUT IT DOESN’T LOOK RIGHT.”
To be honest I was concurrently amused at my response. I think if I had been more specifically forewarned I wouldn’t have had quite the same reaction. And because it’s such a practical and logical change I’ll be cool with it soon.
I enjoy Toad the Wet Sprocket‘s music. (They get bonus points for inadvertently sparking the formation of my all-time favorite band.) After a very long hiatus this classic 90’s rock band reunited and released an awesome new album called New Constellation. I had the opportunity to be one of their Kickstarter backers and download the tracks in early July, so this album was on heavy rotation when I realized I have Aspergers.
Have you ever had one of those moments where a song pops into your head and you don’t know why, but when you look up the lyrics or listen to the song you realize it perfectly fits your mood or the situation you were thinking about? I had one of those moments with this song. It works so well as an Aspie anthem – sensory issues, defenses, feeling alone, wanting to “reach across the breach,” language issues, needing others even though we seem to disappear sometimes.
“Is There Anyone Out There”
A swarm of senses, a shatterstorm
Tangled threads to weave a world
We build defenses and call them homes
Each alive, alert, alone
Is there anyone out, is there anyone out there, hey, hey
Is there anyone out, is there anyone out there calling for you
‘Cause I don’t know how to reach across the breach so deep between us
Is there anyone out, is there anyone out there
Who feels the way I do
Uncertain language, imperfect words
How can we expect to speak the truth
I need you closer
I need you still
No matter how I seem to disappear from you
Is there anyone out, is there anyone out there, hey, hey
Is there anyone out, is there anyone out there
The world I’ve seen it seems no-one could ever know
The same as every other one of seven billion souls
Is there anyone, is there anyone out there
Is there anyone out, is there anyone out there, I’m calling for you
‘Cause I don’t know how to reach across the breach so deep between us
Is there anyone out, is there anyone out there
Who feels the way I do