29 Marbles

Consider this opening paragraph from the book Strengths Finder 2.0:

At its fundamentally flawed core, the aim of almost any learning program is to help us become who we are not. If you don’t have natural talent with numbers, you’re still forced to spend time in that area to attain a degree. If you’re not very empathic, you get sent to a course designed to infuse empathy into your personality. From the cradle to the cubicle, we devote more time to our shortcomings than to our strengths.

Any autism parent - any parent, for that matter - will likely recognize that this is exactly what we tend to do with our autistic children. In fact, it is what is expected of us, to try to make our autistic children into someone they are not. But that doesn’t mean that is what we should be doing.

The following originally appeared here in February 2006.

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Indulge your (kid’s) obsession

I spent Saturday afternoon this weekend at a Yugi-oh regional tournament with my younger (non-autistic) son, who is 13. Though he was not the youngest duelist there, he was one of a handful of kids under 15 in a group of 80+ duelists. (In case you’re not familiar with Yugi-oh, participants are duelists, not ‘players.’) The ages ranged all the way up to 40+, with the bulk of them in their late teens through early twenties. All duelists were male, save one.

I have the feeling that if you were to observe many of these guys in a ‘normal’ environment – say your local high school – your first impression would be “outcast,” “nerd,” or something similar. They have long unkempt hair and a preference for black t-shirts. They keep to themselves, or a small group of like-minded friends. They are not the ‘social butterflies’ that seem to be demanded in that environment. In a word, they would appear to be “non-social” (ok, maybe that’s two words *-).

Put almost a hundred of them in a room together at a tournament where everyone is trying to prove they are the best duelist in town, though, and what you get is a room full of ‘social butterflies.’ As duelists finish their match, they congratulate each other on a match well played. They walk through the room, soaking in what others are doing. In between rounds, they seek each other out, talking strategy, asking about the cards they have (Yugi-oh is what they call a Trading Card Game). It doesn’t matter if you are good are bad, new or experienced. The only thing that matters is that you are interested (I should say obsessed) with the game.

The thing is, many parents I know don’t understand – and thus discourage – their kid’s obsession with this and other similar games. These parents can’t grasp the hours and hours their kids spend learning each card’s abilities, their strengths and weaknesses, how they can be used together, and how they can be used in response to an opponents actions, or the many more hours (and $$$) spent acquiring and sorting through cards to build the perfect deck. And of course, the many many hours spent practicing by dueling with friends, or in solo practice.

Wait a second. Those things sound an awful lot like what most kids go through when they find their obsession. Take a sport like football. Kids spend hours learning playbooks. They spend hours after school every day of the week at practice, sometimes on the weekend. They gather for games in the hope of proving they are the best. It’s just that these ‘obsessions’ are ‘mainstream’, so their parents proudly refer to them as their children’s ‘passions’ or ‘talents.’

Luke Jackson said it best (I’ve quoted this before, but it seemed worth repeating):

Q: When is an obsession not an obsession?

A: When it is about football.How unfair is that?! It seems that our society fully accepts the fact that a lot of men and boys ‘eat, sleep and breathe’ football and people seem to think that if someone doesn’t, then they are not fully male. Stupid!

Girls are lucky enough to escape this football mania but I have noticed that teenage girls have to know almost every word of every song in the charts and who sang what and who is the fittest guy going, so I suppose an AS girl (or a non-AS one) that had interests other than that is likely to experience the same difficulties as a non-football crazy boy.

I am sure that if a parent went to a doctor and said that their teenage son wouldn’t shut up about football, they would laugh and tell them that it was perfectly normal. It seems as if we all have to be the same.

Though I hate to engage in arm-chair neurology, I’d be willing to bet that if these duelists were ‘evaluated,’ quite a few of them would show up on the autism spectrum, likely as Aspies. That is, if they were evaluated in the general context that those types of evaluation are done – against the ‘norms’ of society today. Conduct their evaluation in the context of their world, the world in which they can indulge their passions, and I think they would show up as perfectly normal (whatever the hell that means).

In my thinking over the last week or so on what it means to be different, I seem to keep coming back to the same point over and over: it’s not our kids that have a problem; it’s the world they must live in that has the problem.
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In her post The AAP vs. Eli Stone (January 2008), Ginger Taylor at Adventures in Autism tells the AAP that her son is not “an acceptable loss in the war against TREATABLE viruses” (emphasis hers). The steel trap that is my mind (ha!) remembered that Ginger had brought this up before when talking about vaccines. In Where I stand on vaccines (June 2005), Ginger wrote:

The CDC’s vaccine policy is based on the principle that the good done for the many outweighs the harm to the few. And that is fine if you are making vaccine policy for 300 million people. But I am not responsible for holding back another Rubella epidemic; I am responsible for two little boys who just may fall into that sliver of the population that the CDC considers an acceptable loss. (my emphasis)

An anonymous commenter responds:

YOU are not responsible, but you do share that responsibility with all of us parents. If enough parents assumed your attitude, pertussis, mennigitis, and perhaps even measles would make a deadly comeback. I’m not saying you must vaccinate, the risks/benefits must be evaluated carefully. But if you choose not to, please acknowledge dropping your share of responsibility for the good of all children for what it is - selfish. Please note that I do not consider selfish anything more than a decision taking only you or your children into account. It does not mean you are an all-bad person.

I’ve thought about this very thing quite often when looking at the vaccine question. Does any single parent have any responsibility to “hold back another Rubella epidemic?” I’ve come to the conclusion that no, they don’t. Though the commenter takes great pains to say being selfish doesn’t make Ginger a bad person, the fact that he had say that at all points to the general feeling that being selfish is bad.

But, and this is a big but, everything that everyone does is for selfish reasons. I’ve written about this before in the context of behavior in the world of business, but the general principal is the same. Every action that we take, or influence, or try to make happen, we do because we want a benefit for ourselves or someone we care about. The Founding Fathers of the US knew this fact, and they also realized that this is the only way it can be if the fundamental freedoms they believed in were to be realized. (This is also why you can’t, and shouldn’t, try to get rid of Congressional ‘ear-marks’ .)

The obvious pop culture reference here is Star Trek II: The Wrath of Khan. Spock was right that the needs of the many outweigh the needs of the few, but Captain Kirk was just as right - maybe more so, considering what happens later - in not accepting this “axiom” in this case.

The AAP, and others, have gone overboard over Eli Stone, if you ask me, but this is how it should be. I’d expect nothing less if the tables were turned and the proverbial shoe were on the other foot.

A lot is being said about the pilot episode of ABC’s new legal drama Eli Stone, in which the title character successfully sues a vaccine manufacturer on behalf of a family who believes their son’s autism was caused by the vaccine (or, more accurately, an extra substance in the vaccine). Instead of discussing this show in particular, I decided to re-post this from last February. (The bold passages toward the end of the post were added for this re-post.)
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I will be the first to admit that I am a huge consumer of pop culture. I like to watch good TV (no, it’s not an oxymoron) and film, I keep up with the latest in music (yes, some of it is awful), love video games, and read the occasional novel (though most of my reading these days is non-fiction). It comes through every now and then, like in my October post “Every soul is perfect” - Is there autism in heaven? (Redux), a reflection on how autism was treated on the CBS show Ghost Whisperer.

In response to that post, Ian Parker submitted the following:

Um, regarding heaven and ‘perfect souls’, I would hope that people do not determine their religious beliefs based on the pseudo-religious-philosophical musings of the writers of Ghost Whisperer. At least take the time to consider what Homer has to say before coming to any final decision on such weighty matters.

I share Ian’s hope that people are smarter than that, and am doing my part by helping my sons understand what they consume in a smart way, I am a bit of a pessimist when it comes to actually thinking this is the case (a rare instance of a glass-half-empty feeling on my part).

For good or ill, pop-culture is a driving force in many (most?) people’s perception of the world and their actions in the world. Because of that one episode of Ghost Whisperer, I would venture a guess that many people’s perceptions of autism now include one of “imperfection” here on Earth, the image of a “lost soul” trapped inside an uncooperative body.

Why am I re-hashing this, you may ask. These thoughts came to mind as I came toward the end of Roy Grinker’s new book, Unstrange Minds. In it, Grinker relates the story of how a popular film in Korea has helped reshape Korean attitudes about autism in a positive way. From the book (page 256-257, sorry for the long excerpt):

That month a low-budget Korean film entitled Malaton (spelled the way the main character pronounces the English work “marathon”) was released. The film was based loosely on the real-life story of a young runner name Bae Hyong-Jin. Bae worked part-time on an assembly line in a tool factory when, at the age of seventeen, he ran a marathon in Chuncheon, Korea, in 2 hours 57 minutes. While not anywhere near elite runner times, which are under 2 hours 8 minutes, Bae’s time was enough to earn him national recognition. Why? Because Bae Hyong-Jin has autism.

But the film is not about running. It’s about the complexity of autism as a disorder and the problems people with autism confront in their family and social lives. it is one of the most realistic and compelling cinematic representations of autism that I’ve ever seen. The film was made after the Korean media began to publish stories about people with autism. The media had begun to publish the stories because parents, informed by the Internet and the international media, started to talk about autism in public.

Within one month after its release, more that 10 percent of the Korean population had seen the movie, and it was the second-largest moneymaker in the Korean film industry in 2005. Largely as a consequence of the film, millions of Koreans have a least a basic understanding of autism. On web site chat boards, disability rights advocates, parents, and educators in Korea are claiming that more diagnoses are being made, that people are more willing to bring their children with autism out in public, and that educators are more willing to accommodate children with autism in their classrooms. No one knows whether these changes will last, but optimism is sweeping the country. Parents of children with developmental problems think that their children may have brighter future than they previously imagined.

While autism is much more public in the US than it is in Korea, there is still a lot of ignorance of what exactly autism is, what it means, how it should be handled, etc. Any news story, TV show, or film that deals with the topic is absorbed by a curious public. And, in the absence of any other information (that doesn’t require actually going out and finding it), what people see from these sources is what they will believe, what they will think is the truth.

What if the film the Koreans had seen were Autism Every Day? Their pre-existing stereotypes would have been confirmed. Here in the US, what if Autism Speaks had had the budget to put up a couple of spots during the Super Bowl, with the largest single TV audience in history? What if NBC had broadcast the Super Bowl?

As much as we may wish it were not so, we can’t ignore the power of pop-culture and the influence it has had, and will continue to have, on the public perception of autism.
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This is a slightly modified version of a post I made to my blog No Straight Lines.

I use SiteMeter on this and other sites to track visits (look in the bottom of the right column if you’ve missed it). It is interesting to see how many people visit the site, and where they come from (all over the world), but what fascinates me the most is the referrer log. I get the odd link from someone else’s blog or other site, but the vast majority of referrals to this blog come from search engine queries.

It is interesting to see what search terms people use that find my sites. Even more interesting are the other sites that those search terms turn up. For instance, a search for “video games and autism and gee” returned a link to my blog No Straight Lines, but also a link to Gaming and Students with Asperger’s Syndrome: A Literature Review:

As a teacher in the field of middle years education, I have observed a continual rising interest in video and online gaming by many of my students, regardless of gender and academic ability. In the past few years, I encountered students playing an online game set in a virtual environment (VE) called Runescape. My interest was especially piqued when I noticed students with special needs, especially those with Asperger’s Syndrome(AS) playing the game and exhibiting positive social and cognitive skills that he would rarely demonstrate in a traditional classroom environment. Students with AS were discussing the game with other classmates (and myself) in and outside the classroom. They were asking how to spell words and utilize a calculator in order to achieve objectives within the game. They were problem solving and surfing the web for online discussion groups associated with the game.

In this literature review, I will seek to answer the following questions: What educational learning principles and concepts are associated with online gaming? How do these aspects of gaming benefit students with AS? In turn, I will present a review of the latest research on the issues related to education and gaming, present an overall framework of the game Runescape, discuss some of the defining characteristics of AS, then explore how certain aspects of gaming benefit students with AS.

— Gaming and Students with Asperger’s Syndrome: A Literature Review

A nice pulling together of several of my areas of interest. The Lit Review itself is well worth a read, and the bibliography provides even more.

I will be the first to admit that I am a huge consumer of pop culture. I like to watch good TV (no, it’s not an oxymoron) and film, I keep up with the latest in music (yes, some of it is awful), love video games, and read the occasional novel (though most of my reading these days is non-fiction). It comes through every now and then, like in my October post “Every soul is perfect” - Is there autism in heaven? (Redux), a reflection on how autism was treated on the CBS show Ghost Whisperer.

In response to that post, Ian Parker submitted the following:

Um, regarding heaven and ‘perfect souls’, I would hope that people do not determine their religious beliefs based on the pseudo-religious-philosophical musings of the writers of Ghost Whisperer. At least take the time to consider what Homer has to say before coming to any final decision on such weighty matters.

I share Ian’s hope that people are smarter than that, and am doing my part by helping my sons understand what they consume in a smart way, I am a bit of a pessimist when it comes to actually thinking this is the case (a rare instance of a glass-half-empty feeling on my part).

For good or ill, pop-culture is a driving force in many (most?) people’s perception of the world and their actions in the world. Because of that one episode of Ghost Whisperer, I would venture a guess that many people’s perceptions of autism now include one of “imperfection” here on Earth, the image of a “lost soul” trapped inside an uncooperative body.

Why am I re-hashing this, you may ask. These thoughts came to mind as I came toward the end of Roy Grinker’s new book, Unstrange Minds. In it, Grinker relates the story of how a popular film in Korea has helped reshape Korean attitudes about autism in a positive way. From the book (page 256-257, sorry for the long excerpt):

That month a low-budget Korean film entitled Malaton (spelled the way the main character pronounces the English work “marathon”) was released. The film was based loosely on the real-life story of a young runner name Bae Hyong-Jin. Bae worked part-time on an assembly line in a tool factory when, at the age of seventeen, he ran a marathon in Chuncheon, Korea, in 2 hours 57 minutes. While not anywhere near elite runner times, which are under 2 hours 8 minutes, Bae’s time was enough to earn him national recognition. Why? Because Bae Hyong-Jin has autism.

But the film is not about running. It’s about the complexity of autism as a disorder and the problems people with autism confront in their family and social lives. it is one of the most realistic and compelling cinematic representations of autism that I’ve ever seen. The film was made after the Korean media began to publish stories about people with autism. The media had begun to publish the stories because parents, informed by the Internet and the international media, started to talk about autism in public.

Within one month after its release, more that 10 percent of the Korean population had seen the movie, and it was the second-largest moneymaker in the Korean film industry in 2005. Largely as a consequence of the film, millions of Koreans have a least a basic understanding of autism. On web site chat boards, disability rights advocates, parents, and educators in Korea are claiming that more diagnoses are being made, that people are more willing to bring their children with autism out in public, and that educators are more willing to accommodate children with autism in their classrooms. No one knows whether these changes will last, but optimism is sweeping the country. Parents of children with developmental problems think that their children may have brighter future than they previously imagined.

While autism is much more public in the US than it is in Korea, there is still a lot of ignorance of what exactly autism is, what it means, how it should be handled, etc. Any news story, TV show, or film that deals with the topic is absorbed by a curious public. And, in the absence of any other information (that doesn’t require actually going out and finding it), what people see from these sources is what they will believe, what they will think is the truth.

What if the film the Koreans had seen were Autism Every Day? Their pre-existing stereotypes would have been confirmed. Here in the US, what if Autism Speaks had had the budget to put up a couple of spots during the Super Bowl, with the largest single TV audience in history? What if NBC had broadcast the Super Bowl?

As much as we may wish it were not so, we can’t ignore the power of pop-culture and the influence it has had, and will continue to have, on the public perception of autism.

tagged as: Autism, Asperger’s Syndrome,

Last December, I ended a post with the following question: If there is indeed a heaven, and our autistic children go there when they die, will they still be autistic? The answer, according to the writers of the CBS show Ghost Whisperer is an unambiguous “NO.”

In case you’re not familiar with the show, it is about a woman - Melinda - who helps the troubled spirits of those who die “cross over” into the light. Last Friday’s show (13 October) was about an autistic man who died but was not ready to leave. About half way through the episode, Melinda and her husband - Jim - realize that the man is autistic and that that is why they are having a hard time communicating with him and trying to figure out why he won’t cross over. Here’s the conversation they had (paraphrased to the best of my recollection) :

Jim: But if he’s dead, why is he still autistic? Shouldn’t he be cured?
Melinda: Yes, every soul is perfect. Maybe he has to cross over first.

Aack! Phbbt!

I’m sure many of you started sputtering at Jim’s question, I can only imagine the reaction to Melinda’s response. At the same time, I know that there are just as many people who agree with what these two characters said and believed, who can’t imagine that these ‘damaged’ people would remain damaged for eternity.

To be fair to the show, it was actually presented a decent portrayal of the issues and challenges around autism. A group home for autistics was shown, with the ‘director’ of the home explaining autism a bit to Melinda. Though she touched on some common characteristics, she did not stereotype autism. The (dead) autistic man was living with an autistic woman and died accidentally. He was trying to reunite his girlfriend with her mother - who had institutionalized her many years earlier when doctors blamed the autism on her (refrigerator mother) - before he could cross over.

But that one little statement, that I’m sure the writers didn’t even think about beyond “where’s a good place for him to ask this question,” pointed out a - THE - fundamental divide between people when they talk about autism: is it something bad to be feared and eradicated; or is it something to be understood and accepted?

— Note: In case you’re wondering, they didn’t explcitly show the man being ‘cured,’ but his mannerisms and demeanor changed as he was crossing over in a way that could only mean that he was, indeed, becoming a ‘perfect’ soul.

Autism, Heaven, Religion, Ghost Whisperer

I spent the morning a couple of days ago at a high school freshman orientation. We all know the horror stories of the push to fit in to the social environment of high school. It occurred to me as I was watching the kids that it must be very hard for the neuro-typical kids who are ‘different.’

For autistic or other ‘special’ kids, the typical kids kind of expect them to be different. “Oh, that’s just him, he’s autistic you know.” But for the different NT kids, it must go something more along the lines of, “Man, that kid is just weird” and “Hey, Bobby, why don’t you act/dress/speak like the rest of us?”

I guess that is really just good old-fashioned peer pressure.

We can only hope that all kids are able to be themselves and achieve their own destinies, despite any attempts – however benign or malicious – to make them change.

Here are some lyrics from a song that you may recognize. A rant against the shallowness of conformity, and a hope that we can achieve more:

What happened to the dreams of a girl President
She’s dancing in the video next to 50 Cent
They travel in packs of two or three
With their itsy bitsy doggies and their teeny-weeny tees
Where, oh where, have the smart people gone?
Oh where, oh where could they be?
…
Disease is growing, it’s epidemic
I’m scared that there ain’t a cure
The world believes it and I’m going crazy
I cannot take any more
I’m so glad that I’ll never fit in
That will never be me
Outcasts and girls with ambition
That’s what I wanna see

Disasters all around
World despaired
Their only concern
Will they **** up my hair

In case you don’t recognize the song, it is Stupid Girls from Pink.

tagged as: AutismAsperger’s Syndrome