Monthly Archives: February 2008

Blind faith

When was the last time you changed your mind about something related to autism? If you read back through my nearly three years of posts here you’ll see that my own thoughts on the matter have fluctuated quite a bit. (Good thing I’m not a politician!). It’s not that I have trouble making up my mind, it’s just that I seem to learn something new everyday that influences my opinions.

In a post entitled Nestor Lopez-Duran Ph.D on Autism, Science and Faith-Based Advocacy, Autism dad Harold Doherty, author of Facing Autism in New Brunswick, references the following comments from Lopez-Duran:

what I believe doesn’t really matter, because “beliefs” rapidly turn into blind faith, even amongst scientists. Instead, good science only occurs when positions are flexible and reflective only of the status of the research (data) at any given time

Nestor L. Lopez-Duran Ph.D., Translating Autism, About Science and faith-based advocacy

Doherty goes on to provide his own thoughts:

Many issues such as the mercury-autism, vaccine-autism, genetics-environment arguments in autism discussions purport to revolve around science but often depart from the science and embrace the faith-based advocacy referenced by Dr. Lopez-Duran. To the great detriment of anyone with an interest in understanding the nature and causes of autism.

It is very difficult to maintain this kind of cold objectivity when the subject in question is your own child. But if we, as a society, ever want to get anywhere on these questions (assuming there is somewhere to get to), this is an important lesson to keep in mind.

On a completely separate note, I will be taking a short break from posting here. You may still, however, see my name pop up in comments of other blogs. I plan to return on April 2, not coincidentally World Autism Awareness Day.

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.

Protecting important files with TrueCrypt

In Information wants to be free, but you still have to protect it, I talked about Bruce Schneier‘s recommendation to encrypt an entire disk instead of just your key files.  But sometimes you want to protect your key files as well, either on your system drive, an external hard drive, or a USB thumb drive. 

TrueCrypt is one option for this and, as Lifehacker tells us today, it now supports Mac OS in addition to Windows and Linux.  For more on how to install and use TrueCrypt on Windows, check out this Lifehacker article.

Autism and the transition to adulthood – Whose life is it, anyway?

Today is an election day here in the U.S. The ability to participate in our government is one of the key transition points from adolescence to adulthood, but just one of many transitions that teens – and their parents – must make. For autistic teens, and their parents, this transition brings with it some unique challenges and considerations.

Over the past several years, I’ve written several pieces on this subject. In keeping with the spirit of the day and what it represents, it seems appropriate to repost this one.

I originally posted Whose life is it anyway? Thoughts on guardianship, autism, and growing old on 03 March 2006:

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As part of planning for the future, parents of autistic kids must consider many things. Key among them is this question of guardianship.

When a child in the United States turns 18 they are considered an adult, their own person. They can vote, they can enter into legally binding contracts, they can join the military (and if they are male they must
register with selective service), etc. In order to rescind this legal right, parents must petition the courts and establish alternative guardianship. Obviously, not a decision to be made lightly.

On the other end of the age spectrum, adult children often must make care decisions for their aging parents. Many times this results in these elderly parents living out their final days in a nursing home, with every aspect of their lives controlled by the administrators of the home. Again, not a decision to be made lightly. (I think we’ve all heard the horror stories.)

The film Almost Home, recently aired on PBS, talks about a different kind of way to run a nursing home.

ALMOST HOME offers an inside look at the lives of these residents, their families and those who care for them as each adjusts to the challenges of growing older. ALMOST HOME filmmakers Brad Lichtenstein and Lisa Gildehaus introduce couples bonded and divided by disability, children torn between caring for their dependent parents and their own families, nursing assistants doing difficult work for near-poverty wages and visionary nursing home director John George, who is committed to transforming his century-old hospital-like institution into a true home.

Under George’s leadership, Saint John’s On The Lake is reinventing its 135-year-old medical model of care (think hospital) with a social one (think home). His goal is to transform the way people see nursing homes—not as institutions of boredom and despair but as vibrant communities where residents live rich and fulfilling lives. To succeed, he will have to win over skeptical managers, resistant nurses, overworked and underpaid nursing assistants, complacent residents and often-overwhelmed family members.

The key change in my mind is that the residents here retain as much control as possible of their own lives. They can wake up when they want to, instead of the usual scheduled wake-ups. Meals are tailored as much as possible to what the residents desire, not a typical bland hospital menu. (If someone has lived a good 90 years, and wants some bacon for breakfast, they should be able to get bacon for breakfast!) They have a cocktail hour every Monday where *gasp* they can drink cocktails.

Whose life is it to live? It is the individual’s, of course. But, as the parent of an autistic teenager, that is somewhat easier to say than to act on. Any thoughts from autistic adults (several of whom I’ve recently gained as readers) or parents of autistic adults that have already gone through this are greatly appreciated.

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The Autoimmune Epidemic

While wandering the aisles in the local Borders book store, I saw Donna Nakazawa‘s new book, The Autoimmune Epidemic: Bodies Gone Haywire in a World out of Balance and the Cutting Edge Science that Promises Hope. This description is from the book’s official site:

Multiple sclerosis, lupus, Type 1 diabetes, rheumatoid arthritis, and nearly a hundred other chronic autoimmune illnesses are part of this devastating epidemic, in which the human body, acting on misread signals, literally begins to destroy itself. Alarmingly, the occurrence of many of these diseases has more than doubled in the last three decades, signaling a disturbing trend that can be directly tied to environmental factors in everyday modern life—including our daily exposure to a dizzying array of toxic chemicals.

With the conversation around a recent post fresh in my mind, I was drawn to the book to see what the author had to say about autism in the context of this autoimmune epidemic. There is one section, consisting of two pages, where she mentions the possible relationship of autoimmune issues, vaccines, and heavy metals (specifically mercury in the form of thimerosol) to autism. I don’t recall the specific wording, but she basically left it as, “We’ll have to wait and see what comes of the research.”

Has anyone had a chance to read this book yet? Any thoughts?

Indulge your kid’s passion, and build on their strengths

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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A cow’s eye view of airport security

If you travel frequently by air, I think you’ll understand where I’m coming from. Originally posted 15 May 2003.

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Moo, moo…..

That’s how I felt earlier this week going through security at Newark airport. I was recently re-reading parts of Thinking In Pictures : and Other Reports from My Life with Autism by Temple Grandin for some posts on my autism blog, 29 marbles, in which she talks about her job designing cattle chutes for slaughterhouses (she’s world renowned for this, despite [because of?] being autistic. Ever on the lookout for connections between apparently unrelated things, my brain presented me with the following thought: “I wonder if Temple Grandin could come up with a better design for airport security queues?”

Maybe not, but this got me thinking about cross-functional lessons learned. Too often, in my experience at least, lessons learned and best practices are explored only from the perspective of a specific functional area. There is a lot to be learned from looking at stories from similar, but completely different, functions.

Using the case of the airport security queue as an example:

  • Many people going through an airport security checkpoint have never done so before (like most [all!] cows at the slaughterhouse)
  • For all practical purposes, the way through the process is to simply follow the person in front of you
  • Occasionally, you will get redirected by a security person to a different line, told to stop, etc with little or no explanation (as if you don’t deserve it or won’t understand it anyway)
  • etc.

The situation of people in a strange (as in unknown) queue system that has no obvious explanation in some ways is not really much different from that of a cow going through cattle chutes. What lessons can we take from Temple Grandin’s success in designing cattle chutes that result in smoother operation and apply to the security line problem?

My real point here is that sometimes you can take insights learned from one thing and apply them to something completely different with great success.

Note: Temple Grandin’s personal choice of a title for Thinking in Pictures was Cow’s Eye View, a reference to how she comes up with her designs. Maybe that’s the simple lesson to be learned here: look at the problem from the point of view of the one going through the process.

Another definition of “knowledge worker”

I’ve been going through my archives and found this from 02 February 2005.   A nice follow on to my most recent post on the nature of knowledge work.

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At a break between meetings at a recent big get together, the following defintion of a knowledge worker occurred to me:

A knowledge worker is someone that makes it up as they go along.

Though that expression is usually used in a pejorative way, that is not how I mean it. Over the last couple of days I’ve taken some time to think about the process of these meetings in addition to the content. I realized that although there was a well established process for what we were trying to do, the benefit we were gaining – the knowledge we were creating – came from the way we changed the process on the fly to meet our needs and meet our current goals. We literally made it up as we went along.

Of course, the “new” process will be captured as part of an after action review and lessons learned recorded for the next time this type of event occurs. But I have no doubt that for that next session to succeed as this one has that group will need to take things into their own hands and make it up for themselves as they go along.

A conversation on the nature of knowledge work

Anyone working in the realm of knowledge management has no doubt considered the nature of knowledge work on at least one occasion. I know I have. A few weeks ago there was an interesting exchange of ideas among Shawn Callahan, Matt Hodgson, Stephen Collins, and Dave Snowden (and many others, I’m sure) on the nature of knowledge work. Some key excerpts:

The term ‘knowledge worker’ is now a meaningless concept in developed countries because the shift Drucker started to notice in the ’50s from jobs requiring manual work to jobs requiring knowledge work is now complete. Today all work is knowledge work because even the most manual of activities such as farmer digging post holes for a fence requires pre-planning using their spatial information system, the use of GPS to position the hole and entry of data when it’s done.

The ubiquity of technology is one major factor that makes everyone a knowledge worker. Have you ever seen anyone in recent years define what they mean by knowledge workers and knowledge work? They tie themselves in knots and confuse their readers. The people who write about knowledge workers see themselves as a knowledge worker and wish so very hard that the term is true and useful. But alas it’s not and the sooner we realise this the better so we can get back to asking more useful questions like, “How does knowledge help us to work better?”

Ultimately, the term ‘knowledge work’ and the debate that surrounds it is important because it highlights that there are people who need to consume, create and share knowledge as an integral part of their work, and need the support of policy, process and technology. This was basis of Drucker’s premise of the knowledge economy — the differentiation of the support required for the mechanised work that produces widgets from work that requires support to share and create knowledge.

Sadly, Shawn misses this point about knowledge workers. The term isn’t irrelevant because the term is still important for communication. It carries with it specific meaning to those amongst us who call themselves knowledge managers and practitioners. The term is vital for education of those outside the profession who still don’t understand (or even missunderstand) the importance of what knowledge work actually means in practice. And, despite Shawn’s suggestion of the ubiquity of technology making the term redundant, there are still organisations that are not yet knowledge-intensive [3] but probably will become, so who need to hear how understanding knowledge work can help them.

Shawn Callahan of Anecdote argues that the need for the term knowledge worker is redundant now that technology is ubiquitous in the developed world and that almost every worker trades in knowledge of some sort. He sees its use as a way to discriminate between identified knowledge workers and those whose roles are not traditionally viewed this way.

I see where Shawn is going with his argument, particularly in developed nations. But I agree with Matthew Hodgson, who puts forth an alternative position that Shawn’s views are misplaced. Matthew argues that Shawn misses an opportunity to communicate an understanding of knowledge work outward from the insider community to the larger workforce and organisational management who don’t necessarily label themselves as knowledge workers – “Oh, no! I work in marketing/HR/finance/logistics/whatever.”

Shawn has created some controversy through his recent claim that The term ‘knowledge worker’ is now a meaningless concept, Matthew has countered, with the support of Stephen Collins, to the effect that Shawn has missed the point, failing to recognise that the term still has value in communication. I want to assert that both protagonists are wrong, mainly because of the way they frame the problem. This is of course an minor controversy between friends. If you want a contrast look at the handbags at dawn controversy between two philosophers, Colin McGinn and Honderich reported here which is a spectators delight.

Now McGinn and Honderich are academics, not Consultants like Shawn and Matthew which may account for the more polite and respectful tone of Matthew’s posting. The latter pair may of course work together at some point in the future, whereas work for a philosopher is argument, and a good controversy will almost certainly result in higher book sales. The philosophical debate between Radical Externalism and the Mysterianism is of interest, but the debate is esoteric. Both Shawn and Matthew are talking about an issue of some immediate significance within the knowledge management community, may be as esoteric in its way as Mysterianism but let us pretend not, at least for the present.

Following the discussion through the various threads and links I found a trackback (on Jack Vinson‘s post Knowledge worker thread) to a post of mine from September 2004 (!!!) called My dad is a knowledge worker!, reprinted below for your reading enjoyment.

While I was reading Martin Roell’s Terminology: “Knowledge Worker”, a TV commercial I saw a while back came to mind: elementary school students were telling the class what their dads did for a living, and after a couple of well defined jobs (policemen, construction, etc.) were announced one boy proudly stood up and stated, “My dad’s a pencil pusher!” I don’t remember what the commercial was for, but the imagery stuck with me I think for the same reason Geoffrey Rockwell, as described by Martin, doesn’t like the term “knowledge worker”: the job title gives you no real idea of what the job is.

When my kids were finally old enough to ask me what I do, I told them simply, “I figure out how to solve problems.” That seemed to satisfy them, at least for now. Trying to explain to friends what I do everyday is a bit more difficult. When asked, I usually give my official job title, Systems Engineer. Of course, that instantly begs the question, “OK, but what do you do?”

I work with technology.
I prepare papers and briefings.
I conduct studies.
I work with other people to figure out what needs to be done.
Then we figure out how to do it.

But, like the tasks that go along with the equally generic pencil pusher and knowledge worker, that doesn’t really tell the story. Not sure there is an easy answer to what terminology is best suited here. After all, there is still not really any consensus on the definition of knowledge itself, the very basis of the discussion.

From a practical standpoint, of course, definitions don’t really matter. Or, in Martin’s words:

Most organisations don’t care about the differences between different “knowledge workers” or “knowledge work” and “information work”: They want to solve business problems. They want to improve the bottom line.