What’s in a label? (take 2)

In my last posting, I wrote the following about the consolidation of Asperger’s Disorder and PDD-NOS into a single classification for Autism Spectrum Disorder:

My experience leads me to believe that many people don’t understand the concept of a spectrum unless they can clearly see the boundaries between the different layers of the spectrum.

This generated some interesting conversations that have helped me as I figure out what I think.

Of course, the problem I had with combining these separate diagnoses into a single one – that people would tend to see all autistics as “the same” – also exists with the more “specific” diagnoses. It’s just that now you’ve got several variations on the theme: all Asperger’s is the same, all PDD-NOS is the same, all Autism is the same.

Thinking about all this reminded me of the expression “If you’ve met one person with autism, you’ve met one person with autism.” We are making a lot of process in getting this message out, and identifying autism as a spectrum could help with this even more.

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What’s in a label? Autism, Asperger’s, and the DSM V

Several years ago, I wrote a two part article on my thoughts about whether autism should remain in the DSM. Here’s what I came up with:

For now, we need to keep autism in the DSM, because it serves as the way for autism parents to help their children get the services they need to succeed in the world.

The current draft of the DSM V, available for review and comment, still includes autism – now referred to as Autism Spectrum Disorder (instead of  Autistic Disorder). However, the DSM V proposal recommends that Asperger’s Disorder and Pervasive Development Disorder Not Otherwise Specified (PDD-NOS)be subsumed into an existing disorder: Autistic Disorder (Autism Spectrum Disorder)“.

As you might imagine, there has been a lot of discussion about this. I’m not really sure what I think of this change yet, there are so many aspects to consider:

  • What is the impact to those already diagnosed with Asperger’s or PDD-NOS? In terms of available services? In terms of individual perceptions of self? Will they have to be rediagnosed, or will they be “grandfathered” in to an Autistic Spectrum Disorder?
  • What is the impact to future diagnoses? Will there be fewer children diagnosed autistic, or more? Will a child who would have been diagnosed with Asperger’s or PDD-NOS be diagnosed as autistic? How will this affect funding of special education programs?
  • Will parents accept a diagnoses of “autistic” for kids they believe are “too high functioning” to be autistic but whom they believe need the services that come with the diagnosis?
  • How will special education programs be impacted? Will they be able to avoid a “one-size-fits-all” approach to treating “autism” as if it is a singular thing, or will they remain flexible enough to develop education plans based on the needs of individuals?

And more, many more.

It is the last of my bullets above that most concerns me. Anyone who is involved in special education – as a parent, student, teacher, or administrator – knows that even now Individual Education Plans (IEP) are typically anything but individual. (There are, of course, exceptions, but you will find many many more horror stories than success stories about IEPs.)

I agree with Roy Richard Grinker when he writes that “the stigma of autism is fading”, though I’m not sure I agree with him that this is happening “fast”. I also agree that across the three current diagnoses there is a lot of commonality, both in terms of symptoms and “treatment”.  But there are differences, and I think that having the three separate diagnoses emphasizes the “spectrum” – or, as Grinker calls it, a “continuum”.

My experience leads me to believe that many people don’t understand the concept of a spectrum unless they can clearly see the boundaries between the different layers of the spectrum. Only when you see a rainbow of light coming out of a prism can you see that white light includes all of those colors, and that each of those colors has its own unique properties. We still need this prism effect with autism.

We are making progress in understanding, but we still have a long way to go. So for that reason, I’m leaning toward the opinion that Asperger’s and PDD-NOS should stay in the DSM. At least for now.

A journey of 10,000 hours begins with a single bow (and a couple of thwacks to the head)

Complete and total awkwardness. An amazing lack of coordination between feet and hands. Bare feet rubbed raw and blistered. One blister bursting and leaving a trail of blood following me across the floor (which I, of course, cleaned up). A couple of lapses in concentration, resulting in a couple of hits to the head – one to the forehead, one to the bridge of my nose. More than a little soreness the next morning.

This was my experience at my first full Kendo class last week. I have not had that much fun starting on something new in a long time. In fact, it has been quite a while since I’ve started on anything so completely new to me.  I had forgotten how good it feels to take that first step into something new.

One of the many challenges of growing older is avoiding the ruts that await us. It is all too easy to settle into a certain routine, get comfortable, and never change it up. If you haven’t tried something completely new recently, I strongly encourage it.

It feels good.

Rude is in the eye of the beholder

Quite a while back, Scott (aka @nametagscott) tweeted the following words of wisdom: It’s not the traffic that stresses you out, it is your reaction to traffic that stresses you out. I’d like to modify that just a bit and say:

It’s not rudeness of others that stresses you out, it is your reaction to what you think is rudeness that stresses you out.

Are you a presenter who gets stressed out – or pissed off – when you see people paying more attention to their electronic gadgets than to what you are saying?  Olivia Mitchell provides some insight to this in her article How to Handle a Texting Audience with an answer to the question, “Is it rude?”

Rude is in the mind of the beholder. Rude to you, not rude to them. To label a behavior as rude is to make a negative judgement about it, and that judgement will seep through in the way that you come across.

Your audience are adults. If their behavior is not distracting or annoying other people in the audience it’s up to them whether they pay attention or not, and how they pay attention.

Her advice: “If you want their attention, be more interesting than their cellphones.” It’s you, not them, that makes the difference.

As the parent of an autistic son, I’ve found myself in more than one situation where someone has become stressed about my son’s “rude” behavior. Of course, he’s not being rude, he’s just being himself. But people expect certain things from other people, and when they don’t get it they get upset.

In his new book Linchpin, Seth Godin addresses the question in a couple of short sections. In the one titled Teaching Fire a Lesson, Seth writes:

Fire is hot. That’s what it does. If you get burned by fire, you can be annoyed at yourself, but being angry at the fire doesn’t do you much good. And trying to teach the fire a lesson so it won’t be hot next time is certainly not time well spent.

Our inclination is to give fire a pass, because it’s not human. But human beings are similar, in that they’re not going to change any time soon either.

And yet, many (most?) people in organizations handle their interactions as though they are in charge of teaching people a lesson. We make policies and are vindictive and focus on the past because we worry that if we don’t, someone will get away with it.

It doesn’t do any good to get mad at fire, and it’s not any more useful to get mad at autistics, or anyone, who annoys you. As Seth writes in the section Annoyed at Intent:

If you accept that human beings are difficult to change, and embrace (rather than curse) the uniqueness that everyone brings to the table, you’ll navigate the world with more bliss and effectiveness. And make better decisions, too.

I have been as guilty of all of these things as anyone else through the years, and I’m working to improve (though I still get way too annoyed in traffic). Whenever I start to find myself getting annoyed, I take a deep breath and step back from the situation for just a moment to figure out what it is that is really bothering me.

Try it. You’ll be amazed at how much it helps.

Expertise, opportunity, and legacy are key to success (a review of “Outliers”)


I had been meaning to read Malcolm Gladwell’s Outliers: The Story of Successever since it was first published just over a year ago. Since a lot of the discussion of the book focused on the “10,000 hour rule” for achieving expertise, or mastery, it seemed a perfect fit for my interests. I’m still surprised that it took this long for me to get to it, but I have to say I’m glad that I waited. Not because I didn’t enjoy it, but because I think I appreciate its message better now than I would have if I had read it a year ago.

My first impression on reading the book was along the lines of, “Wait a minute. This book isn’t about mastery.” True, Gladwell talks about the hard work that goes into becoming an expert in a given trade or profession, and includes this expertise as a prerequisite for achieving success. What comes out, or at least what I got out of it is: mastery is required, but not sufficient, to achieve success. (For the purposes of this review, I’ll leave a discussion of what constitutes success to another day.) Mastery is just one part of success, according to Gladwell, the other two being opportunity – and taking advantage of it – and legacy (your cultural background).

Of course, both opportunity and legacy definitely have an impact on your ability and desire to achieve mastery in a given topic.  Gladwell goes through a wide variety of examples of real people, showing these principles in action, including:

  • Bill Gates had an early interest in computers, and because of his cultural environment had the opportunity to use a nearly unlimited amount of free computer access at a time when that access was prohibitively expensive for everyone, much less a teenager.
  • A study of Canadian junior hockey players showed that because of the of the structure of seasons and age cut off dates,  those born early in the year were more likely to have success. He applies this same process to Jewish lawyers in New York and other groups.
  • In a chapter titled “Rice paddies and math tests”, Gladwell explores how the differences in agriculture between Asia and the US have contributed to the differences in education systems and the conventional wisdom (you could say stereotype) that “Asian kids are good at math.”
  • And more…

I enjoyed this book. I’m not sure I learned anything new in terms of “facts”, but I did come away with an understanding of a different way of looking at the stories of the people around me, successful or not. After reading the epilogue, in which Gladwell tells his family story applying the concepts in Outliers, I can’t help but look at every situation now and wonder, “What’s the real story behind how that person got to where they are?”

It has also encouraged me to look at my own past, to better understand my legacy and the opportunities that I’ve had along the way. And my future, to wonder what unique opportunity that my generation has been given and what I will have made of it when the time comes to look back on my life.

Cynefin and mastery

When I first discovered the Cynefin framework, I remember thinking, “Exactly.” It is one of those things that once I saw it I realized how obvious it was, at least in hindsight after someone had pointed it out. Of course, I’ve been trying to actually figure it out ever since.

Dave Snowden blogged recently that he is putting together a history of Cynefin, and provides a brief timeline of its origins and where it is now. He also includes a diagram showing the diagram as it was in 2000 compared to what it is now:

My most recent post that included Cynefin looked at it in the context of  concept work and the role of deliberate practice in achieving mastery. The basic premise of that post was that success in the chaotic domain requires mastery, which is the result of a lot (10,000 + hours) of deliberate practice. Even though originally developed with a focus on knowledge management and communities of practice, the origins of the model, as shown above, seem to lend some validity to my understanding.

An added bonus to Dave’s blog post is the comment from Steve Barth (the emphasis is mine):

Something I’ve been thinking about lately relates to the original knowledge-training axis in the early drawings. It comes up working with clients to differentiate and merge knowledge management and organizational learning programs. Increasingly, I believe that knowledge and learning are often polar opposites, and the order/unorder sides of the model make this clear. Simple and complicated emphasize what we already know—or at least believe to be true—and further investigations and analysis must either accept or falsify these premises. We assume that our assumptions are correct. On the other hand, learning is largely about what we don’t know. That is, we must assume that our assumptions could be wrong.

I’m looking forward to the full history.

Different, not less (or broken)

Tomorrow night HBO will premier the film Temple Grandin:

Starring Claire Danes, Julia Ormond, Catherine O’Hara, and David Strathairn Temple Grandin paints a picture of a young woman’s perseverance and determination while struggling with the isolating challenges of autism at a time when it was still quite unknown.

Temple Grandin and Claire Danes
The film is based on two of Grandin’s books about autism, Emergence: Labeled Autistic (written with Margaret Scariano) and Thinking in Pictures, Expanded Edition: My Life with Autism. Given the typical Hollywood treatment of autism (Rain Man, anyone), I had my doubts – fears, maybe – about how this story would be told. A review of the film in yesterday’s The Atlantic has helped to alleviate those concerns:

Stereotypical characters with autism are a convenient and powerful device for convincing neurotypical people to mend their ways, or for demonstrating the saintliness of the people who put up with them.  These cinematic conceits make HBO’s Temple Grandin, a biopic of the acclaimed animal scientist and autism advocate (to premier on HBO on February 6 at 8 p.m.), particularly remarkable.  From the life of one of the best-known individuals with an autism spectrum disorder, director Mick Jackson has managed to make an utterly original movie about autism, simply by allowing Grandin, portrayed in a stunning performance by Claire Danes, to be the center of her own story.

If you are at all involved in the “autism community”, I know that you will probably be checking out this film. If you are not involved with, or even familiar with, autism, I encourage you to watch this film with an open mind. It may just help you understand the sentiment that those with autism are different, but not less, and are most definitely not broken.