aaaaarrrrrrrrggggggggghhhhhhhhhh!!!!!!!!!!

Autism and New Jersey law enforcement

Over the weekend, Kristina Chew wrote about yet another tasing of an autistic teenager, and mentions a bill in New Jersey to promote autism training for first responders. While that bill makes its way through the New Jersey state legislature, first responders in Hillsborough, NJ are taking the initiative getting the training for themselves.

From Cops learn about autism to help prevent tragedy:

With more than 1,200 children and adults diagnosed with autism in the township -- and thousands more in neighboring communities -- Hillsborough police officers are reaching out to better serve those families during serious law-enforcement situations.

Hillsborough police Chief Paul Kaminsky recently participated in a four-hour seminar, "Autism Shield Program for Autism Recognition and Response." Its goal: To educate police officers and first-responders with an awareness and understanding of autism and how to teach and live with those affected, said Gary Weitzen, executive director of Parents of Autistic Children, also known as POAC.

Some thoughts from Chief Kaminsky and what his department is trying to do:

"All of our officers (there are 56 law-enforcement officers in the Hillsborough Police Department) have been trained concerning identifying and dealing with individuals with autism," Kaminsky said. "With autism being a part of our community and school system, we thought it was important that all our officers be thoroughly trained with the recognition and proper response with people with autism."

As a result, Hillsborough's police department recently has developed an Emergency Data Information base, which allows parents or guardians of special-needs children (and adults) to voluntarily complete a data sheet and return it to the police department.

The Emergency Data Sheet then provides law-enforcement officers with "essential information" -- such as basic identifying information; emergency contact information; means of communication; best way to interact; specific fears or concerns the person might have when approached; sensory or medical issues; and attractions.

If you haven't already, you should think about giving your local PD and FD a call and see what they are doing in this regard, and what you can do to help.

Not in my backyard: Vaccines, autism and acceptable losses

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.

The power of pop culture (redux)

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.)
= = == === =====

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.
===== === == = =

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 is a Trait

This is the third of four posts I originally published at LB/RB. I have included the text of the original comments at the end of the main body of the post.

- - -- --- -----

Driving yesterday evening, I passed a bus stop with a United Way advertisement with the slogan, "Autism is a trait, not a debilitation." Obviously, when I made my way back online, I tried to find out a bit more about this United Way Campaign.

Through Google, I found a link to the campaign on the United Way website. Unfortunately, when I tried the link I received a 404 error. Hopefully it comes back up soon.

There was also a link to a story in the Belleville (Illinois) News-Democrat about the spokesman of the campaign, Tyrin Rencher (pictured at right).

He is on posters, pamphlets and television screens all around the St. Louis region as one of the many faces of the United Way fundraising campaign this season.

Most people probably recognize Tyrin Rencher as the smiling young man in a red apron standing in the kitchen at Pasta Fare in Fairview Heights beneath the slogan: "Autism is a trait, not a debilitation."

Rencher, 27, of East St. Louis, has autism. He was diagnosed with autism at 2 1/2 years old and was enrolled in the Illinois Center for Autism in Fairview Heights when he was 3. He still receives services through the organization and was selected as a spokesman for the United Way campaign this year and as a spokesman for the Illinois Center for Autism.

The article also gives a bit of bit of Tyrin's history and what he's up to today (besides being a "celebrity"):

He is currently a junior at the University of Missouri St. Louis, where he is working toward a degree in business administration.

When talking to Rencher, a person quickly learns that he's a man determined to fulfill his dreams, in spite of the autism, and he is an example of the slogan over his head on the United Way posters.

"A lot of the stuff I planned is coming true and I'm speechless that it is all happening," he said. "I want to open up a restaurant with my degree. Something small, like (Pasta Fare.)"

He is thankful the Illinois Center of Autism was around when he was diagnosed when he was a toddler.

"Without them, I would be lost," he said. "I really wouldn't be in a position to go to college right now."

He is learning to live on his own for the first time, something that he sometimes finds difficult.

"But I'm learning, it's tough, but I'm trying to adjust to living on my own," Rencher said. "One of the things my family has taught me is perseverance, and I do that every day."

I love to see "good news" stories about autism, and this is one of the "goodest" I've seen in a while: it shows an autistic adult making his way in the world, it shows that an autistic person's dreams and life aspirations are just like the rest of ours, and it shows an organization dedicated to helping people make their way in the world AS THEY ARE instead of trying to fundamentally change them.

----- --- -- - -

Original comments:

#

AB | aoskoli.blogspot.com

That’s amazing. A mainstream organization like the United Way gets it right. That is so enormously encouraging.

Oct 6, 11:43 PM — [ Edit | Delete | Unapprove | Approve | Spam
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Christschool |

If anyone is able to find the link to the United Way Campaign with the slogan mentioned, please contact me as I would love to make a video of this. I tried the wayback machine with the broken link but that didn’t work.

Oct 7, 12:17 AM — [ Edit | Delete | Unapprove | Approve | Spam
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Ms. Clark |

Christschool, I don’t know if this was what you had in mind.

http://www.stl.unitedway.org/tyrin.aspx

http://www.stl.unitedway.org/logos.aspx

Oct 7, 12:52 AM — [ Edit | Delete | Unapprove | Approve | Spam
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Club 166 | club166.blogspot.com

Ha! I almost blogged about this myself when I saw it. It is indeed a good thing, and I’m going to drop the local United Way a note with my donation this year.

I had to read it twice over, I was so surprised. An autistic adult going to college and getting real world training and experience. What’s not to like about that?

The only link that I found about this on the United Way site was here. I’ve seen the video that goes with this story once on TV, but couldn’t find the video on their site.

Joe

Oct 7, 12:53 AM — [ Edit | Delete | Unapprove | Approve | Spam
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Club 166 | club166.blogspot.com

Ah! While I was cutting and pasting (incorrectly) Camille posted the link that I was going to.

Joe

Oct 7, 12:55 AM — [ Edit | Delete | Unapprove | Approve | Spam
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Club 166 | club166.blogspot.com

Found it! Here’s the video that I saw:

http://www.stl.unitedway.org/2.....0_240.aspx

Oct 7, 1:24 AM — [ Edit | Delete | Unapprove | Approve | Spam
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Ms. Clark |

Thanks, Club 166!

Oct 7, 2:12 AM — [ Edit | Delete | Unapprove | Approve | Spam
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suzanne | blogger.com/profile/02732095611947394379

Thanks for sharing this.

Oct 7, 3:19 AM — [ Edit | Delete | Unapprove | Approve | Spam
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Kristina | autismvox.com

Hope to read more stories like this and not to feel surprised!

Oct 7, 5:20 AM — [ Edit | Delete | Unapprove | Approve | Spam
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Luai_lashire | luai-lashire.deviantart.com

I don’t mean to belittle the united way campaign or the article, both of which are very good- but I really, really wish they hadn’t said “in spite of his autism”. It’s the only part of the article that I don’t like, which, compared to the rest of the media, is amazing. Like the other people here, I sincerely hope that this keeps going on and that we see more of this kind of thing! :)

Oct 7, 2:08 PM — [ Edit | Delete | Unapprove | Approve | Spam
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Joseph | autismnaturalvariation.blogspot.com

Hopefully things like “in spite of his autism” will get phased out eventually. It’s really no different to saying “in spite of being black” or something of the sort.

Oct 7, 2:44 PM — [ Edit | Delete | Unapprove | Approve | Spam
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jypsy | therunman.blogspot.com

cached version of the link http://64.233.167.104/search?q.....=firefox-a

Oct 7, 4:59 PM — [ Edit | Delete | Unapprove | Approve | Spam
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Gonzo |

Good point, Joseph.

Oct 7, 5:32 PM — [ Edit | Delete | Unapprove | Approve | Spam
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cz |

If the United Way site is down:

http://www.stl.unitedway.org/2.....0_240.aspx

You can also see the video on You Tube:

http://www.youtube.com/watch?v=6yaTd4jGu48

Tyrin is the second story in the video.

Oct 7, 7:46 PM — [ Edit | Delete | Unapprove | Approve | Spam
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VAB | aoskoli.blogspot.com

In the spirit of letting people know when they are doing something I appreciate, I wrote to the media coordinator and thanked her. She wrote right back. Here is our email conversation.

———To: Carrie Zukoski
Subject: Autism is a trait – not a debilitation

Hi,

As a father of a child with autism, I would just like to say how much I
appreciate your publicity, featured here:
http://www.stl.unitedway.org/tyrin.aspx

which I heard about here: http://leftbrainrightbrain.co.uk/?p=687

These days, it is increasingly common to hear autism described as a horror when, in fact, it is as your publicity says, a trait and, in many respects, a very fine one. People need to understand that. Thank you for getting the message out.
——-
Thank you so much for your note. That really means a lot to us. And Tyrin is a great guy – it’s been fun to work with him through this!

I appreciate you sharing the link to the blog too. I will definitely share this with my co-workers.

Carrie

Oct 7, 8:59 PM — [ Edit | Delete | Unapprove | Approve | Spam
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Elissa managingautism.com

We definitely need more good news stories

Oct 8, 11:03 AM — [ Edit | Delete | Unapprove | Approve | Spam
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Kate Kromann stl.unitedway.org/tyrin.aspx

Good morning! Thanks for mentioning Tyrin’s article here. Unfortunately, you seem to have caught us during our Web site upgrade this past weekend! Tyrin’s story is indeed online, at this address now:
http://www.stl.unitedway.org/tyrin.aspx

The video is on YouTube, linked on CZ’s post above, and to watch it from our Web site, click the Harley photo on the left side of the page.

I think your point about “in spite of his autism” is a great one, Luai. We certainly made an effort in our stories not include phrases like that. But of course, we can’t control what they print in the media :-)

Thanks for blogging about this! Do you mind if we link to your site?

Kate Kromann
E-Communications Director
United Way of Greater St. Louis

Oct 8, 12:32 PM — [ Edit | Delete | Unapprove | Approve | Spam
#

Brett

Kate,

Please feel free to link to my post about Tyrin.

While I can’t really speak for the site as a whole, I don’t think there would be any objection from the Left Brain / Right Brain team if you linked to the site from the United Way’s site.

Brett

Oct 9, 1:38 PM — [ Edit | Delete | Unapprove | Approve | Spam

"It's an odd life, but a good one"

Parents of the Autistic Weigh Lifelong Care Options on this morning's Morning Edition on NPR discusses many of the things that I've discussed here before: the need for estate planning and trusts, thoughts on how your adult child will live, potential interactions with law enforcement.

What struck me the most about the story, though, was how autism was portrayed and - more importantly - how the parents in the story have responded to life with autism. The quote I used for the title of this post - "It's an odd life, but a good one" - pretty much sums it up.

Finally, a story about autism in the national media that doesn't focus on the doom-and-gloom, woe-is-me (I?), "my child is gone" view of autism that is so prevalent in the media today. Could this be the start of a new trend?

Let's hope so.

Autism awareness "elevator pitch"

In her recent post Autism Speaks Now, Kristina Chew contemplates the discrepancies between the types of autism research actually being conducted and the types of autism research that are covered in the media (my emphasis):

[A] study by Stanford University researchers published in the February Nature Reviews Neuroscience notes, brain and behavior research on autism accounts for 41 percent of research funding and published scientific papers and only 11 percent of newspaper stories in the United States, United Kingdom and Canada. In contrast, 13 percent of published research was on environmental causes of autism but 48 percent of the media coverage was on this topic: When it comes to reporting on autism, there is a serious gap between scientific research and the mass media; in the case of some reporting on thimerasol and autism, parents are pitted against scientists. Autism Speaks, with its access to the full power of the media, will be getting its message out.

Kristina goes on to ask how scientists (and, by extension, we) can overcome this issue (emphasis is again mine).

I would be curious as to how scientists might “frame” some “hot button” issues in autism: As the back-and-forth in the comments on a post about David Kirby and Autism Speaks, facts and research studies can be cited, but people’s beliefs are not so easily swayed. What are vaccines and chelation but “highly politicized topics” in autism circles? How might a scientist refute such theories and treatments by “strategically avoid[ing] emphasizing the technical details of science”; by translating technical knowledge with an eye to the fact that this alone does not “drive decision-making or change minds”? It needs to be recognized that, when it comes to understanding autism, parents do not rely on facts and evidence and science alone; that emotions—however much acknowledged, or not—play a huge role.

We have to remember, too, that last sentence applies not only to parents but to the media who would reach those parents. And also to the people who are trying to get these parents to give money to pursue a cause.

To reach these people, you need to be able to get your message across quickly, to the point, and convincingly. While it may be possible to get the point across convincingly using the scientific data as a basis, this will not likely be either quick or to the point.

What we need is an "autism awareness elevator pitch." Imagine you find yourself on the elevator with Oprah's producer (to follow the thread started by Kristina), and you have until you get to the top floor to explain why Oprah should dedicate an hour to your view of autism. Here's the quick sound byte that probably helped get Autism Speaks onto Oprah:

This is the national health crisis of our time……..This is bigger than AIDS. This is bigger than breast cancer, and almost no attention seems to be paid to it.

There a lot of ways to approach this (scientist, parent, autistic), I want to hear them all.

So..., what's your pitch?