Link – Intense World Theory

“The boy whose brain could unlock autism,” by Maia Szalavitz

I stumbled upon this piece when browsing facebook.  It’s quite long, but talks about some fascinating research (I had heard of “autistic symptoms in rats” in studies, but didn’t know what that was supposed to look like).  I was of course interested to reach the parts on empathy, such as:

Indeed, research on typical children and adults finds that too much distress can dampen ordinary empathy as well. When someone else’s pain becomes too unbearable to witness, even typical people withdraw and try to soothe themselves first rather than helping—exactly like autistic people. It’s just that autistic people become distressed more easily, and so their reactions appear atypical.

And:

That’s the paradox about autism and empathy. The problem may not be that autistic people can’t understand typical people’s points of view—but that typical people can’t imagine autism.

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Empathy – a postscript

I’m watching a training through the system my company uses, and I got so excited by this part that my hand started flapping.  It just fit so well with yesterday’s post on empathy that I couldn’t help but get excited and share it.  The lecture is called “Psychological Treatment of Autism Spectrum Disorders,” given by clinical psychologist W. Bradley Goeltz, PsyD.

I’ve had kids with Asperger’s and we’ll be talking about another kid with Asperger’s – and they get it.  The can assume the perspective of somebody else who thinks like they do.  It’s still a conscious process – it’s not intuitive – but man they got it.  And the thing is, my Theory of Mind for somebody with an autistic spectrum diagnosis is not very well developed and it is definitely a conscious effort to assume that perspective. It’s not intuitive.  . . .
“I understand, I’m empathic.”  All of us who are in the helping professions, well we’re in it because we’re empathic.  That’s great as long as you’re accurate.  But empathy, in order to be empathy has to be accurate. If you can’t relate, if you can’t get inside that kid’s mind and think cognitively or at least appreciate how they think, empathy is a really tough task.

He also talks about how professionals haven’t been required to work to be empathic to the autistic kids; they expect the kids to have to adapt.

I tried to find more information about him and this lecture to give proper credit, since what I’m watching isn’t available without an account; I found a link to purchase the lecture – http://www.cequick.com/Psychological-Assessment-of-ASD.aspx

Empathy

lightning across Lake Winnipesaukee

lightning across Lake Winnipesaukee

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.

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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?”

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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.”

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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.

Sheldon: Here’s something else you don’t know about me. You just hurt my feelings.
Penny: What did I do?
Sheldon: I opened up and shared something deeply upsetting to me. And you treated it as if it were nothing.
Penny: I-I didn’t think it was a big deal.
Sheldon: It is to me. That’s the point.

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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.

Take that, Les Mis.  I can shoot with a wide aperture, too.

Take that, Les Mis. I can shoot with a wide aperture, too.

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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:

Theory finds that individuals with Asperger’s Syndrome don’t lack empathy – in fact if anything they empathize too much

The Hidden Autistics II: Asperger’s in Adults and Empathy

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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.

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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.

The Joy of Jars

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.

Charlie and me

Charlie is awesome.

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.

Matt, Charlie, Stephen, me, Dad, Dan.  And cookies.

Matt, Charlie, Stephen, me, Dad, Dan. And cookies.

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.

For the Love of Earplugs

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.

These are staying in my lunch bag.

These are staying in my lunch bag.

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.

This is what I feel like doing after being in those ridiculously noisy rooms.

This is what I feel like doing after being in those ridiculously noisy rooms.

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. . .