A look at how journalist see, and cover, the thimerosol question

One of my favorite shows on National Public Radio is the WNYC produced On the Media, which covers how the media covers and treats the various news stories of the week. In this vein is an article from the Columbia Journalism Review, posted in its entirety at Ginger’s Adventures in Autism, entitled Drug Test, by Daniel Schulman.

If you are at all interested in how/why the thimerosol issue is covered the way it is, you should read this article. If you’re trying to find justification for either point of view, however, this is not the source you’re looking for. While it does address the results and validity (or not) of various studies, this article itself passes no judgement either way.

The bottom line, at least what I got out of it, is that most reporters and news organizations are scared – yep, that’s the right word – to even give space to the thimerosol question, much less report any supporting evidence in anything approaching a positive light.

A striking example from the recent news: As Pat Sullivan posted yesterday, USA Today had a story concerning the health benefits, and mercury risks, of eating fish. No where in the article is autism even mentioned.

Update: The article is also available on the Columbia Journalism Review site.

tagged as: , , /

Nice (and not so nice) updates to services

I use Bloglines as my RSS reader. I have a habit of checking the “Keep New” box on posts that I would like to read in more detail or post about. Checking the box would change the description display to indicate that there was a new post in the subscription.

Unfortunately, I tend to have a lot of these. Which meant that I would quite often open a feed thinking there were new posts only to find that there were only old posts I’d marked as new. Kind of a pain.

That changed a week or so ago. The Bloglines interface now gives an indication of how many truly new feeds I have as well as the number of old feeds that I’ve marked to keep as new. They’ve tried out a couple of different ways of displaying this. Here are the ones I’ve seen, they may have gone through a couple of other iterations when I wasnt’ looking:

  • 1 : 2
  • (1) (2)
  • (1) (2)

A definite improvement.

On the other hand, MSN has updated their service in a (for me) negative way. I have an MSN account that I’ve used for a while, though it mostly gets junk traffic these days. Since I prefer to not have to check numerous sites/sources for my mail, I have (had) Outlook set up to check the MSN account. While trying to clear out some old messages, I got an error dialog that basically said, “If you want to keep accessing MSN through Outlook, you need to pay us.”

Guess I’m not going to use MSN through Outlook anymore.

Blog usability: Top Ten Mistakes

Why do you blog? There are many answers to that question, ranging from “I just need a place to write down my thoughts” to “I want to change the world (and get rich doing it).” Your answer to that question should play a large part in how you blog. Or at least how you design your blog.

On that note is Jakob Nielsen‘s latest installment of his Alert Box column, Weblog Usability: The Top Ten Design Mistakes.

Weblogs are a form of website. The thousands of normal website usability guidelines therefore apply to them, as do this year’s top ten design mistakes. But weblogs are also a special genre of website; they have unique characteristics and thus distinct usability problems.

To reach new readers and respect your existing readers’ time constraints, test your weblog against the following usability problems.

  1. No author biographies
  2. No author photo
  3. Nondescript posting titles
  4. Links don’t say where they go
  5. Classic hits are buried
  6. The calendar is the only navigation
  7. Irregular publishing frequency
  8. Mixing topics
  9. Forgetting that you are writing for your future boss
  10. Having a domain name owned by a weblog service

Obviously, not all of these apply to everyone; it all depends on what you want to accomplish with your blog. Still, I think I have some work to do.

How paranoid, er, security conscious, are you?

Just as there is a fine line between genius and madness, there is a fine line between appropriate security and paranoia. On which side of that line are you?

Shred your sensitive personal documents before throwing them away? Appropriate security. Spread the shreds in the garden as mulch? Paranoia.

Passwords on your home network? Appropriate security. Issuing smart cards to your wife and kids? What do you think?

For a quick peak into a paranoid security expert’s approach to security, check out Security for the paranoid, which I found via Schneier on Security (one of the few things I make myself check every day).

I have to admit I don’t know if the author is serious or not, mainly because I don’t know him. My first thought when I read it was that he was serious, and seriously paranoid. I know people who think, and act, like this. And, in fact, some of the things he says make sense. For instance:

I frequently see people posting PGP signed e-mails to security mailing lists. It’s not that these people are afraid of someone actually spoofing fake comments from them on the latest CGI flaw; they just make it a practice to sign every e-mail, no matter how trivial it might be. Sure, these people are signing e-mails when it’s really not important, but I doubt they get caught not signing when it is important.

Or

I also delete unused services on my servers. I block unused ports.

But a few things make me think it is just a bit over the top, including:

  • I keep my PC’s turned around so I can tell if anyone has installed a hardware keylogger.
  • I never check in luggage when I fly.
  • It takes five passwords to boot up my laptop and check my e-mail. One of those passwords is over 50 characters long.

One of the keys to establishing good, and appropriate, security is an analysis of the risk/threat, the consequences of becoming a victim, and the cost of the security measure against the cost. This is what the author of this piece misses, as evidenced by comments such as:

  • Sure, the threat might not be real. No one may ever actually want what you have on your PC. But does that really matter? Does the threat have to be real to warrant strong security?
  • There’s no need to analyze the threat of every situation. Just practice strong security always and you should be okay.
  • I don’t do it because I think someone is going to go through my trash to reassemble bits of my research notes. I do it because it’s good security.

I’ve been giving some thought lately to the challenges of enterprise solutions to problems and my belief that “one size can’t fit all”. Though there are some security best practices (for lack of a better phrase) that can be applied in many situations, blind application of these practices to unique situations will likely result in more harm (less security) than it does good.

Sometimes, change is good

Change. If we are not in control of changes happening to us, change can be a frightening thing. Sometimes, our fears are realized. But sometimes change results in great things. And sometimes, whether we want it or not, ask for it or not, change is just “what the doctor ordered.”

Following our recent move to St. Louis, things changed a lot (obviously). In addition to the obvious major changes, we’ve noticed numerous “minor” changes as we adapt to the new environment. Some of the biggest of these “minor” changes have been the result of the new school environments for our kids.

Tamar recently moved as well, in her case from CA to NJ. She has written an uplifting, yet somewhat tear-jerking, essay about the positive effects of changing schools for her autistic son.

tagged as: ,

Points on the spectrum

One of the biggest challenges in effectively treating any disorder is, of course, understanding the nature of the disorder. The challenges in treating autism are further exacerbated by the broad spectrum on which it presents. What works on one “end” of the spectrum may not work on the other.

Myomancy: Different Types of Autism: Complex and Essential pointed me to recent research (.pdf file) from Dr. Judith Miles and others at the University of Missouri (Columbia) Autism Center that defines two points on the spectrum – Complex Autism and Essential Autism. From the paper abstract [emphasis is mine]:

Heterogeneity within the autism diagnosis obscures the genetic basis of the disorder and impedes our ability to develop effective treatments. We found that by using two readily available tests, autism can be divided into two subgroups, ‘‘essential autism’’ and ‘‘complex autism,’’ with different outcomes and recurrence risks. Complex autism consists of individuals in whom there is evidence of some abnormality of early morphogenesis, manifested by either significant dysmorphology or microcephaly. The remainder have ‘‘essential autism.’’ Separating essential from complex autism should be the first diagnostic step for children with autism spectrum disorders as it allows better prognostication and counseling. Definition of more homogeneous populations should increase power of research analyses.

The paper goes into quite a bit of detail (including all the good statistical analysis ;-), and I’ll be the first to admit I had to look up a few of the terms they use (my favorite – etiology), but it is very interesting reading. A lot to think about, and an extensive list of references to follow up with.

On a somewhat related note is Study: No vaccine, autism tie, a news story I found via Google News that discusses Dr. Miles’ findings that there is no connection between vaccinations and autism in children (as I’m sure you gathered from the title of the story). According to the story, Dr. Miles is currently conducting research into the effects of thimerosol during pregnancy.

The study involved women with a certain condition who must receive Rh immune globulin shots during pregnancy. Those women are exposed to thimerosal since it is an ingredient in the injections they receive. “We conclude that there is no indication that pregnancies resulting in children with autism were more likely to be complicated by Rh immune globulin/thimerosal exposure,” Miles said.

Update

The article in the Rocky Mountain News I mentioned above was a bit light on details and left me curious about Dr. Miles’ actual research on the subject. While a quick Google search didn’t turn up anything on that front, I found an overview of autism written by Dr. Miles on Gene Tests, a “publicly funded medical genetics information resource developed for physicians, other healthcare providers, and researchers, available at no cost to all interested persons.”

The overview is quite detailed, though it does give a broadbrush discussion of causes. All in all, though, worthwhile.

What you get is what you see (yes, that’s what I meant to say)

From Jakob Nielsen is R.I.P. WYSIWYG – Results-Oriented UI Coming, a look at the possible (and, he argues, needed) demise of the What You See is What You Get (WYSIWYG) design for user interface.

Unfortunately, we’ve now reached the limits of the current GUI paradigm. Displaying commands in menus, toolbars, and dialog boxes works with a limited number of elements. But Microsoft Word 2003 has 1,500 commands, and users typically have no clue where to find most of them.

Another WYSIWYG downside is that it forces too much manual labor on users and requires a stretch of imagination to envision results in advance. Yes, you can gradually massage your work into the shape you desire, one modification at a time, and visually confirm progress as you go. But you have to make each modification yourself, at the cost of many a mouse click….

Direct manipulation of WYSIWYG objects thus has three primary limitations:

  • A plethora of commands, each of which you must locate (most people don’t, and thus never use most of the features they’ve paid for).
  • Lots of chopping away at the edges to shape your marble block of a blank screen into your desired goal (leading to a great loss of productivity).
  • No guidance relative to the goal; you must determine how to reach your goal from the starting state by combining multiple primitive commands. (This denies most users their expressive power; people are generally better at modifying an existing design than creating one from scratch.)

Nielsen uses the new design in the next version of Microsoft Office, based on a results-oriented user interface, to describe what he thinks this next generation of user interface will be like.

Rest assured, the current GUI will stick around for quite a while, but – as Nielsen states – as Office goes, so goes much of the rest of the software world.

Personally, I’m looking forward to giving it a try.

If you’re in St. Louis next Tuesday…

… the St. Louis County Special School District is conducting an Autism / Asperger Resource Fair:

Experts from SSD and organizations from around the state will provide guidance and materials on autism and Asperger syndrome. The fair will run from 3:30 to 7 p.m. on Tuesday, Oct. 11 at SSD Central Administrative Offices in rooms 60 and 61, 12110 Clayton Road, Town & Country.

I’m not sure exactly what they’ll have, but it sounds like it is worth checking out.

Support and services for autistic adults

Though it provides information specific to Massachussets, Students can ‘age out’ of special education provides a good general overview of the types of support and services available for autistic adults, as well as limitations to those services. As important, the article provides key advice for parents of autistic children approaching adulthood.

Some excerpts:

[S]pecial education for children is an entitlement program that provides services based on the child’s needs. Cost cannot be used as a reason to deny special education services for children. In contrast, services for adults are based on funding that has been assigned by the state Legislature. Adult services are not automatically available. Multiple factors – such as the amount of money budgeted by the state, and the number of students turning 22 in a given year – affect the availability of services. (In some states, such as NJ, the financial status of the autistic person is also taken into account when determining eligibility for specific support and services.)

When a child approaches adulthood, long-term legal and financial planning should begin. In particular, parents need to consider whether full or partial guardianship is appropriate for their son or daughter. Also, each child should apply for federal benefits, such as Social Security. (It is important to keep in mind that, by default, when a child turns 18 years old they automatically become their own guardian. If you want to retain full or partial guardianship over your autistic child, you need to convince the courts that your child is not capable of being their own guardian.)

Parents should carefully consider the advisability of the student leaving school prior to age 22 because entitlement services end when the student leaves school. Moreover, the last two years in the school system can be invaluable, providing students with increased exposure to career development and work experience.

As with any kind of financial and future needs planning, it is probably never too early to start making a plan.

Tagged as: , ,