Monthly Archives: September 2005

“I’m glad I’m not autistic…”

This was the reaction of a friend’s autistic teenager as he watched the Autism Epidemic series that NBC broadcast last spring. How do you tell him that he is autistic?

As our autistic kids get older, it is one more thing we must all address (along with the birds and the bees and everything else that comes with growing up). But how best to do it?

Bonnie has some thoughts and suggestions at An Impression of Autism from a kid on the Autism Spectrum:

I personally do not believe in keeping the diagnosis a secret from family, school or the child. It is all about awareness and making the person with autism understand more about themselves to help them as they grow and become more independent. This all depends on the level of the child.

She recommends some books, from many perspectives, as well as some other ways in which to raise the issue.

The problem also applies to how we inform siblings about their brother’s or sister’s autism, and some of the resources Bonnie mentions address that as well.

Good stuff from someone who’s gone through it.

Neurolearning Blog

On the recommendation of Zack at Brain Waves, I took a look at the Eide Neurolearning Blog. The blog covers a wide range of topics related to learning, specifically the different ways that different people learn. As you might expect, the blog also addresses some autism related topics.

The blog itself is a somewhat recent replacement for an e-mail newsletter that is a companion to the Eide’s main website, Neurolearning.com. The Autism Archive addresses “theoretical” topics such as Visual Side of Autism Architecture of Empathy, Science of Autism Ill-Defined as well as more “practical” topics such as Autism Spectrum Disorders – Why Does it Take 10 Minutes to Diagnose? and Music Therapy for Autism.

The other topics are quite interesting as well and include Gifted & Creative Thinking, Learning Styles, Dyslexia, Mathematical Thinking, and Computers, Video Games, and Learning. I’ve just started going through the whole of the archives, but I like what I see so far. I think you’ll like it, too.

My first exposure to autism

The introduction to autism for most people comes in their pediatrician’s office when they hear those dreaded words. My first experience was a bit different.

As seniors (Class of ’82) at St. Louis University High School, a couple of friends and I were just starting on a three week community service project at the Judevine Center for Autism. Mike, Rich, and I walked through the doors, not really knowing what to expect. We stopped a member of the staff as she walked by so that we could introduce ourselves and find out where we should go. As we were talking a muscular young man, probably 14 or 15 years old, walked towards us wth a smile, apparently happy and in a good mood.

He then punched the woman we were talking with as hard as he could, right in the middle of her back, and turned and walked away.

“?!?” was the look on our faces as we looked around at each other. “What have we gotten ourselves into?” In this case, first impressions were not lasting impressions. It was an incredible experience.

Over the next three weeks we learned a great deal about autism, how it affects kids, and the people who dedicate themselves to helping these kids. The Center served (still does, actually) the entire PDD/Autism spectrum, from the low-end to the high-end. [I hesitate to use those descriptors after reading Form and Functioning: For Autistics, There’s No Truth in Advertising, but it is the best I could come up with for now.]

At first glance, some of the kids just looked like “normal” kids. After a little observation, though, it became obvious that these weren’t your typical kids. Not that this was bad. Once we got to know the kids, and they got to know us, most of them very quickly became just “different.” My experiences in middle and high school had prepared me quite well for “different.” [As a youngster I was labeled as “gifted” and placed in a school for “gifted” kids. Very few “normal” role models there! ;-]

But some of the kids were more than just different. These were the severely autistic kids. One stands out in my mind. He was 17 at the time. He had poor gross motor skills and non-existent fine motor skills. He could not talk, though he had a range of grunts and moans that could express a wide range of emotions, from anger and frustration to joy. (At least, this is how I interpreted them.) And occassionally, very occassionally, you could get some true interaction. Left on his own, this boy would bite himself, would thrash about, would bang his head so hard you could almost feel the walls shake.

The experience served me well 12 years later when I finally did hear those words from a pediatrician. We had known something was up, but hadn’t quite gotten to the point of saying the “A” word out loud. I know I was thinking it. But I was also thinking, “It could be worse. A lot worse.”

Autism Watch: Your Scientific Guide to Autism

Searching through the web I found Autism Watch: Your Scientific Guide to Autism, edited by Dr. James Laidler (MD). Though it hasn’t been updated since May 05, it has some interesting and informative links.

For an idea of Dr. Laidler’s motivations, read My Involvement with Autism Quackery, which begins:

Ever since I began the Herculean (some might say Quixotic) task of exposing the quackery and pseudoscience surrounding autism, I have had people ask me, “Are you the same Jim Laidler who used to talk about chelation at autism conferences?” To them, the idea that I could once have been an impassioned supporter of the very thing I am now trying to debunk is hard to fathom. Well, everyone has something in their past that they are embarrassed about—and that is mine.

I consider myself to be a very scientific person. While growing up, I was skeptical and inquiring and naturally gravitated to the sciences. My first brushes with pseudoscience and quackery in medical school left me convinced that “it could never happen to me.” I was sure that my background and training would keep me from making the same mistake as “those people.” I was wrong.

A year or so after my son was diagnosed with autism, with no hope for cure in sight, I was feeling desperate for anything that might help him. My wife attended a conference about “biological treatments for autism.” She came back extremely excited, having heard story after story about “hopeless” cases of autism “cured” by a variety of simple treatments. I was initially skeptical, but my desperation soon got the better of me. We started out with the simple therapies—vitamins and minerals—but soon moved on to the “hard stuff’: the gluten- and casein-free diet, secretin, and chelation. Some of it seemed to work—for a while—and that just spurred us to try the next therapy on the horizon. I was “hooked” on hope, which is more addictive and dangerous than any “street” drug. Meanwhile, my second son developed an autism-like disability at the age of 18 months.

Never underestimate the importance of leadership

Usually when I make one of my (all too frequent) stops at a fast food place and actually go in, I don’t really pay too much attention to what goes on behind the counter. Like many things I experience day to day, I usually just assume that things will work. On one recent visit, though, I couldn’t help observing the action.

The place was in chaos. There were only three people in line being served, there were three cashiers working. But it took forever for any of us to get our food. The cashiers, drive thru, and grill people were all talking about something, mostly complaining. There were no fries up. “Not my job.” “Where are the burgers?” “That one was supposed to be plain.” “Where is …?” The employees were mostly 20 or 30 somethings. Obviously not happy about being there at all.

Off to the corner was the “manager” (I use the term loosely) on duty. He was trying to figure something out on the milk shake machine. Oblivious to what was going on around him, even when the conversation turned to complaining about him. He looked like he was 17 or 18. I think he was trying to hide in plain sight.

About a minute later, the assistant manager came in. He seemed to be about the same age, but what a difference. He quickly saw what was happening (or not), assessed it, and got things moving.

Never underestimate the importance of leadership, even in the most mundane of situations.

What is autism?

No, really. What is it? I know what everyone says when you ask them the question. You can search Google and get a bunch of generic answers. But what, really, is autism?

Is it a result (symptom) of heavy metal toxicity? The overload of mercury in children as a result of childhood vaccinations.

Is it a different kind of mind?

What about all those other things associated with autism, what some call co-morbidities and some call symptoms of autism?

Will we ever know? Can we ever know? Does it matter? If we ever do find out what causes it, should we try to eradicate it? What if someone doesn’t want to be cured? Whose decision is it?

If we can’t/shouldn’t cure autism, can we cure society?

Top-down vs. Bottom-up KM: Insights from the Katrina response

Watching, listening to, and reading about the response to Hurricane Katrina I have noticed that, in general, the “official” response of government has been almost universally denounced as slow and insufficient while the “un-official” responses of individuals and various organizations have been praised as rapid and, at times, heroic.

Though there is still a lot of analysis to be done in terms of what worked and actually made a difference, at first glance these two ends of the response spectrum provide some real world, real time insight into the question of what type of organizational culture and knowledge management is better – that which is designed top-down or that which is “grown” from the bottom up.

Instead of the term “better”, I think the term “more appropriate” is, well, more appropriate. The two different styles of KM are best used in the circumstances they are best suited for. In a crisis situation such as this, there is no question (at least in my mind) that the ad-hoc, bottoms up method of doing things works best. But I don’t believe it is scaleable to the level needed for the medium- to long-term KM needs.

I think that what will come out of the inevitable investigations into “what went wrong” is not that top-down KM doesn’t work, but rather that there was no effective KM system or process in place to support the required top-down operations. This was, as far as I know, the first major catastrophe that FEMA has had to deal with since being incorporated into the Department of Homeland Security bureaucracy. (See Destroying FEMA for more on FEMA and DHS.)

There is obviously a bit of work that still needs to be done to make sure that all threats, natural and man-made, are adequately managed from a knowledge perspective. I’m sure that we’ll hear more on that once Congress starts its investigations.

Experiences with Special Ed: The Ugly

As bad as the whole of the Kindergarten year was, one incident stands out. Julie came to me one night and told me that Zeke’s teacher had called to talk about his behavior, his acting out in class. What it came down to was she was asking for Julie’s permission to strap Zeke down in his chair so he would sit still in class.

This was 1996, not even 10 years ago, and the teacher (with the concurrence of Zeke’s case worker in the district) wanted to STRAP MY CHILD DOWN IN HIS CHAIR. Julie, of course, said no. Here’s where it gets ugly.

Not long after Julie told me about this obscene request, I happened to be at the school. This teacher, who had already approached Julie and been turned down, told me that she would like to use physical restraints on Zeke. Did she tell me that she had already asked Julie, and that Julie had said no? What do you think? Needless to say, I also said no. (What I thought was, “Why don’t you let me strap you down in a chair!?”)

It wasn’t long after this that we requested the IEP update and got the placement Zeke needed.

Update:  Sadly, more than 10 years after this happened to us the problem seems to be growing instead of going away.  Makes you want to shout, yell, scream, cry, throw your hands up in the air and wonder what the hell is wrong with us as a society?