What would it take? (Or, Why the debate will never end)

Before you read the rest of this post, please take a moment (or, if you read as slow as I do, several moments) to read these two posts, by different authors, discussing the study Continuing Increases in Autism Reported to California’s Developmental Services System: Mercury in Retrograde and the accompanying essay Thimerosal Disappears but Autism Remains published in this month's Archives of General Psychiatry:

• Thimerosal Exposure Declines, Autism Rates Increase (Autism Vox)
• Making Sense of the California Autism Numbers (Age of Autism)

So, what do you think? Does the study prove anything? Disprove anything? If you believed before reading these posts that autism is caused primarily by thimerosal (or mercury in general), did reading these posts change your mind, or cause you to doubt that position? Conversely, if you believed before reading these posts that thimerosal / mercury is not a cause of autism, did reading these posts cause you to change your mind, or to question your beliefs?

On the Autism Blog at About.com, Lisa Jo Rudy hits the nail right on the head with this pessimistic (but unfortunately accurate) observation:

Knowing the autism community as I do, I find it hard to believe that these findings will change much of anything. Those who believe firmly that vaccines are NOT to blame for the rise in autism diagnoses will stand on these findings as proof positive of their claims. Meanwhile, those who believe firmly in the toxic nature of vaccines will continue to advocate for an end to required vaccinations - and for compensation for vaccine damage to their children.

In his article on Age of Autism, Mark Blaxill effectively quotes Karl Popper as a guide in his examination and acceptance of criticism to his theory:

He who gives up his theory too easily in the face of apparent refutations will never discover the possibilities inherent in his theory. There is room in science for debate: for attack and therefore also for defense...But do not give up your theories too easily--not, at any rate before you have critically examined your criticism.

But this then begs the question, at what point do you give up your theories. In discussing his conversion from atheism to theism (I believe Christianity, though he never comes out and says it) in his book There is a God, Antony Flew writes:

Now it often seems to people who are not atheists as if there is no conceivable piece of evidence that wold be admitted by apparently scientific-minded dogmatic atheists to be a sufficient reason for conceding "There might be a God after all." I therefore put to my former fellow-atheists the simple central question: "What would have to occur or to have occurred to constitute for you a reason to at least consider the existence of a superior Mind?"

Obviously, this question can go both ways, and can be applied to just about any partisan disagreement, including the one at hand. With that in mind, I'll rephrase the questions I asked above:

• If you believe that thimerosal is not a primary cause of autism, what would it take to convince you that it actually is?
• If you believe that thimerosal is the primary cause of autism, what would it take to convince you that is not?

Note: please don't respond with something along the lines of "nothing could make me change my mind because it is obvious that my belief is correct." If that it how you feel, then you don't have anything worthwhile to contribute to this conversation and I'd prefer it if you didn't clog up the comments.

Autism and God

Occasionally I have posted on the topic of autism and religion. These have been very general thoughts about how the Church, the religious, and God (whichever may be yours) view autism and autistics.

Ginger Taylor, on the other hand, has written an in-depth discussion of autism from a Christian point of view in a series of posts she calls Autism in God's Economy. Originally posted last spring during Autism Awareness Month, she has re-posted them for the Christmas season.

Here's how Ginger describes the series:

Because so much is at stake, the autism discussion and debate grows louder and more fevered, often making it difficult for those involved to really take in various perspectives. Even when we do, they are all still flawed human perspectives. Even the best, brightest, wisest and most experienced of us do not have the whole story.

But God does.

So in “Autism in God’s Economy” over the next six days I will discuss a few things that the Bible tells us about God’s perspective on those with Autism and on the rest of us. This series is predicated on the deity of Christ and the inerrancy of Scripture, which may be controversial ideas to some of my regular visitors. If they are to you, I invite you to read on none the less, and take a look at what God of the Bible says. If you are a professing Christian, then this is an important series for you to read no matter how autism affects you.

The series includes, as Ginger mentions, six parts:

The Least of These - In God’s economy, the weak, the marginalized, the disenfranchised, the overlooked, the voiceless, the vulnerable, the sick, the oppressed, the grieving, the bullied, the exhausted, and those at the end of their rope are the ones who get into the VIP section. They are the ones who gain the attention and compassion of the God of the Universe.

Those with Autism - What Matthew 25 means to you whose autism has allowed you to be mistreated is profound. It means that not only does The God of the Universe see what happens to you, He stands behind you at all times taking careful note of all your interactions with others. He records who victimizes you, who ignores you and who works their butt off to get to know you give you what you need.

Parents of Autistic Children - Once you become the parent of a disabled child, you begin to see what that ‘blessing’ really means in concrete terms, because one of the first things that happens to you, in your early grief, is that you become grounded. All of the trivial distractions, the petty rivalries, the BS ego trips, the vain ambitions and the frivolities of life suddenly become very unimportant. The crap in your life starts to fall away and it is replaced by seriousness about things of true value.

Friends and Family - It is their innocence and vulnerability that God stands behinds and uses to judge those who come into their sphere of influence. It is precisely because they are so easy to dismiss and mistreat, that God watches closely to see which of us have extracted ourselves from our own self-centeredness and selfish ambitions to notice someone who is need and to bear their burden with them.

Those in Power over Those with Autism - If you have taken responsibility for any part of the life of someone with autism, or even if that responsibility has been thrust upon you, take this time to measure yourself. Have you lived up to the responsibilities that you have been given to the innocent and vulnerable lives that Jesus has chosen to represent Him for the purposes of His judgment in his absence?

For All of Us Who Have Failed in Our Duty - When those of us with autistic people in our lives take a hard, honest look at ourselves, we realize the question is not have we failed them, it is how often and how big have we failed them.

As fellow autism dad Wade Rankin says in his post about Ginger's series, "For anyone who has an interest in the spiritual side of this autism thing, or who may have questions about reconciling the notion of a benevolent God with the autism epidemic, it makes for good reading." Make sure you check out the comments discussion between Ginger and Jonathon for even more on the latter.

Thought for the day - Living your own life

A consistent, recurring theme for parents of autistic children has long been, "You know your child best." While this is not always easy for parents with a new diagnosis to accept, or understand, those of us who have been doing this for a while recognize what it means.

Listen to the doctors, the teachers, the experts. Read whatever you can find. Try different approaches to helping you and your child. But in the end, do what YOU as the parent believe is best, based on your knowledge of your child. Specific programs - whether it be ABA, chelation, mainstreaming in school, etc - will never be successful if they are blindly implemented without your or your child's individual needs being used as part of the decision.

A while back I picked up Deng Ming-Dao's 365 Tao - Daily Meditations. As its name suggests, it has one Taoist meditation per day. I'm not a Taoist (I don't think), and came upon the book after reading another by Deng, Chronicles of Tao, itself a very interesting story. (To be honest, I'm not really sure if it is fiction or not - it is presented as a true story - but in the end it didn't really matter; it's a good book.) I have found that many of the meditations in the book are very useful and, indeed, practical. I've marked each of the pages with the appropriate date (there is a chart in the back of the book that does this, but I like having the dates on the page), and have referred to it off and on for many years now.

Yesterday's entry, Retrospective, resonated with me as I was thinking of those common themes of parenting, especially parenting an autistic child:

You could labor ten years under a master
Trying to discern whether the teachings are true.
But all you might learn is this:
One must live one's own life.

Too often today we try to live life like others expect us to, this is a nice reminder that our lives are our own, and that they are ours to live. Which brings to mind something I saw on a young man's t-shirt last weekend at a local Yugi-Oh tournament:

The only way to know who you are is to go somewhere you don't have to be anyone else.

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?

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.


tagged as: Autism, Asperger's Syndrome,

"Every soul is perfect" - Is there autism in heaven? (Redux)

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

No wheelchairs in heaven? What about autism?

Yesterday morning on NPR's Morning Edition, I heard Ben Mattlin's commentary Valuing Life Whether Disabled or Not (available in either Windows Media or Real Player format).

Commentator Ben Mattlin has been quadriplegic since birth. At the memorial service for a disabled friend who passed away, he came to realize the world needs to expand its definition of what it means to live a successful life, disability or not.

What caught my attention, and inspired the first part of the title of this post, were the last few sentences of the commentary:

Are there no wheelchairs in heaven? I'm not buying it. For me, if there is a heaven, it's not a place where I'll be able to walk. It's a place where it doesn't matter if you can't.

If there is indeed a heaven, and our autistic children go there when they die, will they still be autistic?

tagged as: Autism, NPR, Morning Edition, Heaven, Disabilities