Monthly Archives: January 2012

On Autism and Empathy…

Imagine that you are engaging in an activity that you enjoy that requires the use of your hands. Now, imagine that you have arthritis and it hurts to use your hands. At first, you might adjust your technique in hopes of avoiding some of the pain, but eventually, the pain will exceed your enjoyment of the activity, and you will begin to avoid the activity altogether. It is likely that many of my readers will know someone who has experienced this. Some of my readers will have experienced it themselves. Personally, I know people who have given up motorcycling, an activity that I enjoyed with them, because of arthritis or other conditions that made it painful for them. I feel the pain of their loss.

There is a widespread belief that autistic people, including those with Asperger’s syndrome, lack empathy because they do not express it as others do. I disagree. I definitely feel empathy for others, but I struggle to express it. There is a reason for that.

Among the criteria for Asperger’s syndrome in the DSM IV is “marked impairment in the use of multiple nonverbal behaviors such as eye-to eye gaze, facial expression, body postures, and gestures to regulate social interaction.” Let’s think about how empathy is typically expressed for a moment. It is sometimes expressed with words, but those words are usually accompanied by nonverbal behaviors.

Impairment in the use of nonverbal behaviors is only the beginning, though. In their 2007 paper, “The Intense World Syndrome – an Alternative Hypothesis for Autism,” Markram, Rinaldi, and Markram propose that “The autistic person may well try to cope with the intense and aversive world by avoidance. Thus, impaired social interactions and withdrawal may not be the result of a lack of compassion, incapability to put oneself into some else’s position or lack of emotionality, but quite to the contrary a result of an intensely if not painfully aversively perceived environment.”

What if you had some condition that made interacting with others painful? Can you imagine that? In much the same way as with arthritis, you might try to find ways to avoid the pain while still interacting, or you may avoid interacting altogether. That’s my struggle.

As with mild arthritis, there are ways to mitigate the pain. A motorcyclist with mild arthritis might adjust the controls or use heated gloves. He or she might also wait for the best weather. For me, interacting with others is less painful in quieter and less crowded settings, so I avoid it when it is more crowded or noisy. I don’t think that will surprise anyone, but what may surprise you is that I feel empathy intensely. I struggle when people have intense personalities or are expressing themselves with intensity. I won’t say that it is wrong for them to do so, but I would appreciate some understanding for how it affects me if such a person needs to interact with me.

I think the real problem with autism and empathy is that it is difficult for others to see the world as we do. I hope I’ve helped you see more of what we see. Feel free to ask questions if I can help you understand further.

This is a huge topic, and there are quite a few very talented autistic writers who would love for you to hear what they have to say about it. I would appreciate it very much if you would take the time to visit my friend Rachel’s site, Autism and Empathy.

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Filed under About Asperger's Syndrome, Communication, Empathy, Relationships, Social Interaction

Concerning social anxiety and meltdowns…

Recently, in an online group of adult aspies I belong to, meltdowns have been a topic of discussion. This is a very serious aspect of Asperger’s syndrome that can create tremendous social struggles. It is among the reasons some adult aspies fear to leave their homes. With the permission and encouragement of the other members of that group, I’m going to use some of the insights from that discussion, as well as my own experience, to help my readers understand meltdowns and how they relate to the social anxiety so many aspies experience.

I want to begin by defining what a meltdown is. According to Merriam-Webster, the definition that best fits what I am describing is “a breakdown of self-control (as from fatigue or overstimulation).” Notice that it does not reference autism or Asperger’s syndrome. I believe it is possible for anyone to experience a meltdown. As I told a neurotypical friend not long ago, I believe anyone would display the same behaviors after being tortured sufficiently. Also, notice that a meltdown is different from a tantrum, though they may look similar, especially in children. The purpose of a tantrum is to manipulate, as most parents are well aware. A child throwing a tantrum will stop once they get what they want. A child having a meltdown is not really concerned with your response to the behavior. The only thing on that child’s mind is the condition that triggered the meltdown. The meltdown will continue until the child recovers from it, which won’t happen unless the condition that triggered it is changed or removed, or the child is distracted from it. The same is true of adults.

What triggers a meltdown may vary from person to person, but there are some themes that came up in my discussion with other aspies. All of us mentioned some form of sensory overload as a trigger, though some of us expressed specific sensitivity to different things. Also mentioned were forms of information or emotional overload. Here are some specific examples from our discussion: sudden or repetitive loud noises, high-pitched noises, flickering (or fluorescent) lights, bright lights, unexpected changes, disruptions in routine, crowds, other people getting too close, and more information or emotional data coming in than one can easily process. This is not an exhaustive list, and it should be noted that triggers may vary between individuals. I, for example, enjoy the sound of a motorcycle, while many aspies will struggle with it. If there is an aspie in your life that you care about, it is a good idea to learn what his or her triggers are, as well as to identify signs that a meltdown is approaching. You just might be able to help…

I believe most of us aspies are aware when we are approaching meltdown, but if we see no immediate way to change or get away from the trigger, we will likely feel helpless, which only makes things worse. Below are some descriptions of how it feels from some of my aspie friends:

“I get tense. My answers go from overly verbose to overly terse. My breathing changes, my jaw starts to clench and I get stomach cramps. Recognizing all these symptoms has helped me avoid major meltdowns for several years now, but not always- sometimes they still sneak in. I will become forgetful about things I shouldn’t such as eating, drinking water or even going to the bathroom!”

“I’ve sometimes predicted meltdowns an hour before they even happen because I can ‘feel’ when something bad’s about to happen. later warning signs include pacing back and forth, uneasiness, headaches/stomachaches, sweating, and one time I even fainted.”

“For me it feels like most people describe as a panic attack – stomach aches, trembling, trouble breathing and then feel like crying. I feel like I have to escape the area and hide by myself – I get really stand-offish and I also forget to eat, sleep or do basic things that I need to.”

“I freeze, just stop functioning if it’s really bad, and I feel like I’m so panicky I’m going to explode. I pace, I rock, I flap (my ‘flapping’ is actually with clenched fists.) Sometimes the stimming helps dispel the energy. I can’t talk.”

“I feel suddenly overwhelmed, my heart rate speeds up, I start to breathe fast, feel very panicky, lose any ability to speak coherently or at all, and all I want is to get out of there FAST. Sometimes I burst into tears. It’s a horrible feeling.”

As you can see, the descriptions are very similar, and they give some clues as to external behavior you can watch for. Pacing, shaking, and becoming unusually quiet are external signs many of my aspie friends mentioned. Another friend of mine mentioned that people have told him they feel uneasy and intimidated when he approaches meltdown. I’ve heard similar about myself. I can assure you that I will not intentionally hurt anyone, but if you feel that way with me and are unsure how to handle the situation, I would suggest that giving me some space and a bit of quiet is probably the best course. I am very open to discussing this with others, though, and I have made a few people close to me aware of what triggers I struggle with, what signs to watch for, and how to help me recover. I strongly encourage you to discuss this with any aspies you care about. I also encourage my fellow aspies to open up to their friends. It has helped me tremendously.

I hope at this point that my readers understand that this is a real struggle and one that we can’t always control. It’s certainly not something we choose to do, and the fact that you may not see or understand the trigger doesn’t make it any less real. Many of us are afraid to leave our homes because we may find ourselves falling apart in an unfamiliar situation with no help in sight. Call me nuts (many aspies will), but I’m sometimes willing to risk it, and I have had meltdowns around other people. Some people have helped me when I needed it, and others were less kind. I suppose the bright side is that I know who my real friends are, and I hope other aspies are encouraged to step out into this messy world. On behalf of those that do, I’d like to say that I don’t believe anyone should have to apologize for a disability. I don’t think any person with a heart would expect, much less demand, an apology from a wheelchair user who needs a door held. I have two arms, but I think any person with a heart would be willing to offer brief assistance after I explain that my left arm is paralyzed. In the same sense, I believe a person who feels offended by the behavior of an aspie having a meltdown should be willing to understand after being given an explanation. To those who disagree, I ask: What if it were you?

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Filed under About Asperger's Syndrome, Disability, Social Interaction

About that famous “Asperger arrogance”…

This topic was suggested to me by a coworker after it came up in a discussion of Rudy Simone’s book Asperger’s On The Job. I strongly recommend this book to aspies who work or are seeking work, as well as their advocates and prospective employers. I think Rudy has done a great job of presenting the issues as well as practical ways we can all work together to address them.

In chapter 4, Rudy discusses the aspie tendency toward bluntness and perfectionism, and near the bottom of page 20, she brings up what many describe as “Asperger arrogance.” I’d like to point out that her placement of these three topics in the same chapter is no coincidence. They are related.

Before I dive in, I’d like to take a moment to define “arrogance,” as I think it is important to understand exactly what I’m talking about. Merriam-Webster defines “arrogance” as “an attitude of superiority manifested in an overbearing manner or in presumptuous claims or assumptions.” Notice that it is defined mainly in terms of behavior.

In my very first post, I listed some of the characteristics of Asperger’s syndrome, as presented in the Diagnostic and Statistical Manual of Mental Disorders IV. One of those characteristics was “marked impairment in the use of multiple nonverbal behaviors such as eye-to eye gaze, facial expression, body postures, and gestures to regulate social interaction.” A person who is unable to use nonverbal behaviors to regulate social interaction is very likely to say or do things that are inappropriate for a given situation. Combine that with a tendency toward blunt honesty and an eye for problems that need solving, and I think it’s easy to see how such a person could seem overbearing and presumptuous. That said, Rudy points out that “we are often devastated to find that we have hurt someone’s feelings,” and that, “it is not for selfish reasons that the AS person will do this, it is merely to help.”

I believe that we (human beings) dislike arrogance because we dislike the idea that others believe themselves to be superior to us. Specifically, I believe that we dislike the idea that others believe themselves to be of greater worth. So, I think the question is whether the “Asperger arrogance” comes from an actual belief in one’s superiority, or from a lack of social awareness combined with a sincere desire to help.

As she continues into page 21, Rudy mentions that “a recent study by the Department of Neuropsychiatry at Keio University School of Medicine in Tokyo found that ‘Individuals with Asperger’s disorder have higher fluid reasoning ability than normal individuals, highlighting superior fluid intelligence.'” She continues on to say that “This may explain why those with AS often feel superior to those around them who do not possess the same kind of intellectual abilities.” Well, there it is! Aspies really do feel superior to everyone else and really are arrogant jerks, right? No, I don’t think so, and I don’t believe that’s what Rudy is saying.

I’ve taken a lot of tests in my life, but one of the most memorable was a colossal failure. The test measured a specific aspect of brain function, and my score was 6.5 standard deviations below normal. That’s really, really low. Three standard deviations below normal would be worse than 99.7% of the population; 6.5 is almost unfathomable. The bottom line is that it’s a sure bet that your brain works far better than mine in this particular area. It’s a huge weakness for me. I think most adult aspies are keenly aware of their weaknesses. Our weaknesses certainly do account for a lot of the discussion in the aspie forums where I am active. I think we are also keenly aware of our strengths, and I don’t think that’s a bad thing.

Some time ago, our IT department took the Strengths Finder assessment. If you are unfamiliar with this, I recommend visiting www.strengthsfinder.com. The basic idea is that a person is more effective when maximizing their strengths rather than focusing on overcoming weaknesses. The assessment tells you your 5 greatest strengths out of 35 defined in the book Strengths Finder 2.0 by Tom Rath. Mine are ideation, intellection, learner, strategic, and context. For those unfamiliar with Strengths Finder, here is a brief description of each:

  • ideation – generating ideas
  • intellection – examining and refining ideas
  • learner – taking in new knowledge and ideas
  • strategic – figuring out how to best use ideas and resources
  • context – examining how things have worked in the past and applying that to understanding the present

Anyone seeing a theme here? Ideation, intellection, and strategic are practically the definition of fluid intelligence. I do believe that I’m strong in these areas, but I’m also very much aware of my weaknesses. Like most human beings, I want my strengths to be seen and valued, but my weaknesses are mostly related to interacting with others. As Rudy said in her book, I am often devastated to find that I have hurt someone’s feelings. I do not believe myself to be better than any other person in general. In fact, I struggle often with feelings of worthlessness. At the end of the chapter, Rudy points out that, “If those abilities are not recognized, it can leave a person with AS feeling unfulfilled, unutilized, unappreciated, and resentful.” Her statement here matches with what I’ve read in Strengths Finders, which leads me to believe that aspies are really no different in this area than other human beings. I believe that our social struggles tend to make it difficult for others to really see and appreciate our strengths.

In the end, I believe that understanding the social struggles that come with Asperger’s syndrome can make life much better for aspie employees and their employers. When in doubt, talk things out.

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Filed under About Asperger's Syndrome, Aspie strengths, Communication, Social Interaction, Work