12/18/2010

In defense of obsessive interests: Or, what clinicians and researchers won't tell you about ASD and giftedness


This is how the NIH describes people with Asperger's syndrome:
  • "The most distinguishing symptom of AS is a child’s obsessive interest in a single object or topic to the exclusion of any other."
  • "Children with AS want to know everything about their topic of interest and their conversations with others will be about little else. Their expertise, high level of vocabulary, and formal speech patterns make them seem like little professors."
  • " Children with AS will gather enormous amounts of factual information about their favorite subject and will talk incessantly about it."
  • "Unlike the severe withdrawal from the rest of the world that is characteristic of autism, children with AS are isolated because of their poor social skills and narrow interests. In fact, they may approach other people, but make normal conversation impossible by inappropriate or eccentric behavior, or by wanting only to talk about their singular interest."
Don't they make these kids sound really unpleasant?

What you're supposed to picture: an awkward, geeky boy (it's always a boy), with giant glasses, ugly clothes, too much pimples, and a loud, monotone voice. He's probably either gangly or overweight, and either way, he's clumsy and carries himself in a way that seems indescribably "odd." You're usually forced into spending time with him. He sits or stands too close to you, making you feel uncomfortable, seemingly desperate for you to like him. He has some unusual interest--obsession, really--like rare butterflies of the Amazonian rainforest, and he knows every imaginable fact about them. Which is nice, except that's all he wants to talk about. He tells you facts about butterflies whenever he gets the chance in a flat, monotone voice that's a little too loud, not pausing to explain why it's interesting, ask you what you think, or give you a chance to comment.

When you start looking bored, then flicking your eyes around looking for an escape route, he doesn't seem to notice. When you make up some excuse and try to leave, he follows, still telling you about rare Amazonian butterflies. When you finally get angry and yell, "I'm not interested in what you're saying, I'm tired of you following me around, and I just wish you would go away!" he looks up at you with wide, hurt eyes like a kicked puppy, and maybe says something like, "why didn't you tell me?" Needless to say, he never makes small talk. When he grows up, if he finds a job aligned with his interests, he resembles Sheldon Cooper from The Big Bang Theory.

And, because of the unsympathetic outsider's tone the NIH uses, you'd be forgiven for thinking that. But that's not the only person you could picture, and it's not what I picture.

I picture a gifted kid, like the one I wrote about in an earlier entry about gay suicide and prejudice. She is bespectacled, yes, but decently groomed. She wears clean, appropriate clothing, and has clearly showered, washed her face, and brushed her hair. Dinosaurs are her special interest, and she spends all her spare time reading about them and going on online discussion groups to talk to paleontologists and other dinosaur fans. She has her own theories about how dinosaurs should be classified and why they should be classified that way. She runs up to you, excited to tell you something she just learned about dinosaurs: it turns out that, as she has long suspected, the famous comet didn't kill the dinosaurs after all. Like the first boy, her voice is a little too loud, but far from flat and monotone, it is breathless from excitement. Her words spill out just slowly enough to hear and she gestures animatedly, looking into your face and trying to convey the enthusiasm she feels.

Unfortunately, like many people, you don't really care what killed the dinosaurs. She notices you looking away, stops midsentence, and pauses for a moment, as if trying to think of something to say. Then she asks you a question, or lets you change the subject. But it's clear she really wants to talk about dinosaurs, and she keeps trying to bring the conversation back to them. Though she tries to pay attention to the topics you raise, her eyes keep glazing over. If you tell her you're not interested in dinosaurs, she'll look at you, hurt. If she were older and more self-aware, she might say, "look, you're my friend. You tell me about America's Next Top Model and I'm not interested, but I listen to you because it's important to you. Well, dinosaurs are important to me. Why won't you listen to me? Aren't I your friend, too?"

Incidentally, this girl happens to have an IQ over 130, and thus could be considered a "gifted child." Regardless of their level of social skills, gifted kids usually have "obsessive interest in a single object or topic to the exclusion of any other." They "want to know everything about their topic of interest," and will "gather enormous amounts of factual information about their favorite subject and will talk incessantly about it." In fact, this desire might be the driving force that makes them gifted.

Because their interests are so important to them, "their conversations with others will" often "be about little else." Many are noticed and tested for giftedness in the first place because their "expertise, high level vocabulary, and formal speech patterns make them seem like little professors." As social beings (like most NTs), "they may approach other people," but because other children lack their interests, intellectual maturity, vocabulary, or passion, they may find no common ground, and "normal conversation" may be "impossible."

Gifted children have no difficulty socializing with people at their intellectual level (adults and older children), showing that at least at a basic level, they possess normal social skills and a normal desire to engage with others. But to kids their own age, their behavior seems "inappropriate or eccentric." In my opinion, this shows more about the limited capacities of typically developing children than it does about the gifted child--in fact, research typically finds gifted children to be more empathetic, more socially perceptive, and far more concerned than typical children about injustice, whether it be another child being bullied on the playground or human rights issues in other countries.

So, obsessive interests can provide the driving force behind the development of talent. They can also lead to social problems, not because of a social deficit in the obsessive person, but because of the intellectual limitations of his listeners.

Here's another way to look at the situation. Indie music fans tend to scorn fans of pop music like Britney Spears, and vice versa. Indie music fans see Britney Spears fans as undiscerning victims of the herd mentality, while Britney Spears fans view indie music fans as snobs. Imagine you were the only Britney Spears fan in a world of indie music fans. Everyone else thinks she's a trashy sellout. Whenever you talk about listening to her music or going to see her concerts, people roll their eyes, make cutting remarks, or try to get away from you. What you do next depends on how much you value Britney Spears. If Britney is just a lukewarm interest, one of many, you can simply talk about other things instead and enjoy her music in private. But what if Britney (as silly as this sounds) were the animating passion of your life?

Imagine the passion that Olympic athletes put into their sport, or Nobel Prize winners put into their research. Now imagine that's how you feel about Britney Spears. Now imagine not being allowed to talk about her, because no one's interested.

What does it feel like to have unusual interests that are so passionate you are bursting to think and talk about them, to the exclusion of all else? I can't speak for every passionately obsessive person (I hope others will comment), but here's what I experience.

When I think about one of my obsessions, I feel like a totally different person. I feel alert, excited, so energized I feel like I could think about it forever, without stopping. My mind races, asking questions, forming hypotheses, coming up with experiments to try, sorting through observations of myself and other people for relevant examples. Ideas keep bubbling up, and while observing them, I find some creative and interesting. I can feel my understanding of my obsession growing deeper and more complex. I am as happy as if I've just discovered the meaning of life. Food, water, and sleep become irrelevant--indeed, I sometimes get so engrossed in reading or talking to people about my interests that I forget to eat. No matter how tired, sluggish, or demotivated I felt before, I now feel as if someone had switched on the reward center in my brain. I feel as if I just drank ten cups of coffee and my whole skin is vibrating with energy, but instead of diffusing worthlessly everywhere, all that energy has narrowed to a point behind my eyes so I can use it. I feel like jumping around, skipping, and singing.

Not only do I want to know everything about it, but I want to bounce my ideas off someone else to learn what they think about it. Most of all, I want to share all this excitement with someone else. First, it makes the experience more real and meaningful, as all experiences become when shared. Second, I want to give someone else a taste of the ecstasy I'm experiencing.

Other people see my eyes sparkle, my gestures become animated, my smile become deep and genuine and my whole being become more present. When I talk, I can barely contain my enthusiasm so I gesture broadly and talk fast, smiling like I'm doing what I love most in life.

This is how I've felt when engaged with one of my passions, ever since I was five years old and obsessed with the Oz books. It is one of the best experiences I've ever had, and certainly the most all-consuming*. If you've felt it yourself, you'll recognize what I'm talking about. If you haven't, it might be impossible to understand. I suspect most people lack this sort of deep, emotional-intellectual-energetic connection to something that possesses their whole being, so the behavior of a gifted child or a child with ASD seems inexplicable. Peers and even adults don't see the emotional message, the eagerness to share one's joys. Neither do they see the elaborate structure these children use to structure their knowledge. So when obsessed kids try to share their passions, others might just hear a litany of "unrelated" facts.

To me, a friend is someone I trust enough to be myself in their company, someone with whom I can share my joys and sorrows (and who can share theirs with me). My greatest joys are to find out about something that fascinates me, and to share that joy of discovery with someone else. These are the drives that push me to, as the NIH (uncharitably) puts it, "talk incessantly" about my intellectual passions. The instinct to share yourself with another person is a fundamentally social instinct, so how ironic that children are perceived as having no social understanding when they try to reach out and connect with someone else.

How would you feel if, no matter how hard you looked, you couldn't find someone with whom you could share your deepest joys and sorrows, someone with whom you could be yourself? Imagine if someone asked you, "how was your day?" and you couldn't tell them about the fascinating thing you just learned, even though it made your day? Imagine that, if you ever wanted to talk about something you care about, you'd be forced into one-sized conversations, because the other person would drop out and leave you talking to yourself? Imagine that you couldn't be yourself around your friends, because they can't or won't understand. Meanwhile, well-meaning adults keep telling you that conversation is about connecting with other people, and even though your peers reject your attempts at connection, the adults tell you the problem is with you. They tell you you have a neurological disorder, and if you complain that the label doesn't fit, you're told (in that condescending manner of people who diagnose learning disabilities) that you're in denial and there's a word for it: "anosagnosia."

What does it mean that who you are, and what motivates you, is so different from everyone else? Should you be "normalized," rid of those troublesome "special interests" once and for all? Would a gray, boring life without authentic connection be a worthwhile price for "normalcy?"

NTs with normal IQ can be themselves around other people, because they all like roughly the same things, and they all draw from a common pop-cultural base (though they may differ in their opinions of various segments of it). Gifted children don't have that luxury. "Normal social skills" are for people whose personalities and fundamental motivations allow them to be normal.

Obsessive interests do not preclude a lack of social skills. But one can be a social genius and still come off as "Aspie-like" sometimes because of a passion for things most people don't care about. That social genius must go towards papering over the mismatch between one's own nature and one's peers', not to mention one's own knowledge that the gulf may be too wide for a true connection to ever develop.

Obsessing passionately over things, even unusual ones, is not inherently pathological. But as long as the DSM, the NIH, and many autism researchers leave out their benefits, and the inner experience associated with them, they will be stigmatized, and well-meaning people may pathologize children unnecessarily.

*Given the extreme pleasure and deep satisfaction that comes from pursuing obsessions, it's not surprisingly, some people with autism experience their obsessions as almost like addictions
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In future entries, I may discuss the evidence that many clinicians and researchers not only leave out the inner experience and positive effects of obsessions, but exaggerate and perhaps even invent negative effects. I may also provide a link to thoughtful blog entries by parents who saw the value in their children's obsessions. As usual, parents are way ahead of the research and diagnostic community.