23 February 2007

"In My Language": The video that caught CNN's eye

The spark that caught CNN's eye about Amanda Baggs (see my last post if you don't know what I'm talking about) was her video "In My Language" posted on YouTube. While it is easy enough to just go to YouTube to watch it, I would like to share it here as well.

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22 February 2007

Why don't more people understand this yet?

One of the dangers of being too close to a topic like autism and autism awareness is that you sometimes forget that not everyone has caught up with you in their perception of that issue. Even people you think should know better by now.

An example that recently struck me was how many people still don't realize that "low-functioning" autistics can be very intelligent.

In her new book Strange Son, author Portia Iverson describes her initial reaction to the idea of an intelligent "low-functioning" autistic:

“There’s a boy I think you should know about,” Francesca Happe began, gesturing for me to sit down. “His name is Tito.” The renowned psychologist from England, whose specialty was autism, continued: “He’s eleven years old and he lives in India. He’s quite autistic, but he can read and write and he’s very intelligent.”

She smiled at me and paused before going on, as if to gauge my reaction.

“Tito is a wonderful poet as well,” she continued. “He’s even published a book, an autobiography with some of his poetry in it.”

“And he’s autistic?” I asked in disbelief, thinking I must have misunderstood.

“Yes, he is definitely autistic. ... There is only one Tito in this world, and no one else like him. He is his own disorder,” she replied with certainty.

I knew that no one had ever heard of such a severely autistic person being able to write and communicate independently. But wasn’t there even a remote chance that there could be others who looked and acted just like Tito but couldn’t communicate? At the very least, couldn’t Tito provide an extraordinary window into the most severe kind of autism?

This exchange between Iverson and Happe occurred in Spring 1999 and serves as the starting point of the story that Iverson tells in her book. Not to spoil the ending, but by the end of her story (circa 2003), Iverson comes to the conclusion that to me today seems so obvious: Tito is not one-in-a-million, he is not "his own disorder."

Fast forward several years to two days ago. From his blog, Dr. Sanjay Gupta of CNN describes a recent meeting he had with Amanda Baggs, author of the ballastexistenz blog:
Amanda is obviously a smart woman who is fully aware of her diagnosis of low-functioning autism, and quite frankly mocks it. She told me that because she doesn’t communicate with conventional spoken word, she is written off, discarded and thought of as mentally retarded. Nothing could be further from the truth. As I sat with her in her apartment, I couldn’t help but wonder how many more people like Amanda are out there, hidden, but reachable, if we just tried harder.
Trying harder starts with getting the word out. But how to go about it? I'm glad that Dr. Gupta has written about Amanda, and that Anderson Cooper had her on his show last night (I've not seen it yet). Too much of the coverage of autism is doom and gloom, maybe this will help to get the word out to a few more people.

But I have the feeling it is going to be a long, hard trail, because even those that should know better by now obviously don't know yet. Dr. Gupta captures this problem well in his closing paragraph:
I am a neurosurgeon and Amanda Baggs opened my eyes about the world of autism.
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There is also a story about Amanda posted on CNN Health.
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Update: From Anderson Cooper's website on CNN, it looks like he may have more with Amanda on tonight's show (22 Feb 07).
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20 February 2007

Diagnosis: Autism - nothing new on 60 minutes

A quick follow up to 29 Marbles: Autism on 60 Minutes - 18 Feb 07 . My first thoughts after watching the 60 Minutes piece Diagnosis: Autism on Sunday night was, "Wow, this was a non-event."

Maybe it's just me, and the fact that over the past year I've been soaking in just about every autism story, theory, etc and reading several autism related books, but the show didn't seem to shed any new light on anything.

Of course, if I were the parent of a recently diagnosed child, or (gasp) the parent of a 6-12 month old who wasn't responding when I called his name, it would have been a different story. But what exactly would I have learned?

16 February 2007

Every child is unique

Yesterday, abfh wrote something that captures perfectly how I feel about being a parent - not just of an autistic son, but of both my kids (emphasis is mine):

Children are always different from their parents and from one another in a great many ways, and each child is uncharted territory. No one ever knows how well they can deal with parenting any child. It's always a matter of gaining experience on the job, observing how the child grows and learns, and loving the child enough to let the natural process of growth take place, unconstrained by the parents' needs and assumptions.
This has now found a place in my trusty notebook of things I want to have handy. If anyone asks me how I "deal" with parenting an autistic child, I'll simply show them this.

15 February 2007

Autism on 60 Minutes - 18 Feb 07

I've already set the DVR to record this. Though the teaser article gives a little preview of what they'll talk about, I'll withold any comments until I've had a chance to watch it.

With no known cause or cure for autism yet, researchers are trying to detect the earliest signs of the disorder so they can begin treatment earlier, giving parents some hope against a condition the government now says affects about one in every 150 children.

60 Minutes correspondent Lesley Stahl reports on ongoing research this Sunday, Feb. 18, at 7 p.m. ET/PT.

Homogenized Education

Quite a while back I posed the (mostly) rhetorical question, "Why doesn't every child have an IEP?"

I was brought back to this train of thought recently by a passage in Roy Richard Grinker's Unstrange Minds (emphasis is mine):

To be sure, debate is brewing about whether some of the these higher-functioning children should be classified as autistic or even disabled. Some disability experts contend that the problems encountered in educating children with Asperger's Disorder lie less with the individual child than with the educational system. The U.S. educational system, they suggest, has disseminated Asperger's Disorder as a category because it is useful to its attempt to make the student body as homogeneous as possible. The paradox they identify is that a child who doesn't fit in has to be seen as somehow impaired in order to justify an effort to normalize him.
This trend toward 'homogenized education,' an attempt to make sure that everyone* learns the same thing in the same way, reminds me of many - mostly misguided - attempts to do something similar in business. If you've ever heard the term Business Process Engineering, you know exactly what I'm talking about.

The fallacy in this approach, of course, is that education and learning are not processes that lend themselves to efficiency. Not perfect efficiency, anyway. That's not to say that their aren't things that can be done to improve the process.

But identifying a process and then trying to make everyone adhere to, and excel in, that process just won't work in education (just like it doesn't work in business).

* An exception to this are the "gifted" children, which I wrote about here.

10 February 2007

Religious belief and perceptions of autism

I just posted the following in the comments to my last post, in response to a comment from jypsy, but wasn't sure how many people would see it there. So, here it is again.

I would be curious to see if there is any data concerning the effect of religious belief on how someone views autism (and vice versa). Are devoutly religious people more likely to consider autism a 'bad thing' that should be overcome (ie, curebies)? Are atheists more likely to accept autism as a part of global neurodiversity?

Or is the issue, like most everything else, more complex than those simple distinctions. (I'm sure the answer to that is yes.)

Has anyone seen any data on that?

09 February 2007

The power of pop culture

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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08 February 2007

Site update

As part of the move onto the new blogger, I am finally getting around to updating this site. Please excuse the inevitable chaos as I go through and figure out the new Blogger system and what it is I want to create.

One side effect I know of in advance is that all of the comments to date will be "lost." Before Blogger had a good commenting system, I went with HaloScan for comments and trackbacks. As part of my upgrade, I plan to implement the Blogger comments. The old comments will still be available (and there are some good ones), I just won't have links to them from the site. At least not right away.

I should be back soon with some actual content worth reading (well, worth writing at least!)