At the top of this list of unintentional teachers are kids, especially my own.

When the relationship between parents and their kids is discussed, “parent as teacher” is a common interpretation. There is no doubt that parents need to teach their children. But if we only see ouselves as teachers, whether it is because we are supposed to or because we really want to, we are missing out on some of the greatest learning opportunities we will ever be given the chance to experience.

This is especially true if your kids are different from you, or different from what you expected them to be. For example, if you are a “jock” and your kid a “geek” ( or vice versa). Or your kid is disabled and you’re not.

If you are a parent, take the time to learn from your kids. You’ll be amazed at what they can teach you.

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.

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.

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.

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.

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.

Over the weekend I gave the idea a bit more thought. Also like many people, I’ve often thought about maybe writing a book, and Gene’s suggestion got me thinking about it again. There are actually many things I could write about: parenting, autism, leadership, systems engineering, FIRST robotics, trampoline and tumbling.

And then the resistance – my lizard brain – showed up. “But that sure is a lot of hard work.” “You don’t even have 100 subscribers to your blog, who would buy a book by you?” “You think you know enough about these topics, but do you really?” “You’ve indulged the idea, now let it go and let’s get back to what we were doing before.”

By the end of the weekend, I’m sad to admit, the resistance had all but defeated me. All I had were the remnants of a very basic mind map to show I had been thinking about it at all. And then Seth Godin told me why I should write a book:

If you’ve never written a non-fiction book, there are a lot of reasons why you might want to. It organizes your thoughts. It’s a big project worthy of your attention.

…and…

If you want to change people, you must create enough leverage to encourage the change to happen…. A book is a physical souvenir, a concrete instantiation of your ideas in a physical object, something that gives your ideas substance and allows them to travel.

A lot of ideas that bounce around in my head, and many of them get published here on the blog. Many more of them are notes and sketches in the many notebooks I’ve accumulated over the years.

Most of these are ideas for change that I want to get across to people, to maybe change their minds about how they view autism and those who are autistic or to show gym owners and team parents how they can run a trampoline and tumbling meet that people will still be talking about years later. I have pages and pages of ideas on how to spread the work and word of FIRST, to get our kids interested in how they can use science, technology, and engineering to change the world for the better.

So, I guess what I’m saying is I’m going to write a book. I’m just not sure yet what I want to write first. Thank goodness for mind maps to help me sort through all the possibilities. Once I have my topic, I’ll set a ship date and get to work.

My elder son was just starting the second grade, his second year at this school. As we walked in on the first day of class, it seemed as if a party were going on. Kids were roaming the halls, teachers and staff were talking to each other and the kids, asking how them about their summer and telling them what a great year it was going to be. Amazingly, they even talked to me, asked me how my summer was, if there was anything they should try to get my son to talk about from his summer vacation.

In other words, “we’re glad you’re here, we’re going to take good care of your son.”

The next day I took my younger son to his first day of Kindergarten. I had to sign in at the front desk before walking him down the hall – an incredibly dingy, quiet, and deserted hall – to his new classroom, where we found about 10 of his new classmates sitting quietly in their chair, hands folded nicely on their desk. No one was talking to them, even the teacher. Especially the teacher, who greeted us with a curt, “Welcome to class, just find a desk and sit down while we wait for announcements.” Huh??? As I walked back out the hall, I took the time to look in on the other classes along the way. I was greeted by much the same as in my son’s room.

The message I took from that school: “we’ve got your kid for the day, as long as he does what we tell him there will be no problems.”

As many of you know, one of my sons is autistic and attended a private day-school while the other attended the local public school. Care to guess which was which in this story? (I’ll give you a hint: we were very fortunate that our autistic son went to the school he did.)

The first school is all about engagement, the other all about compliance. You may recognize this theme of compliance and engagement from Dan Pink’s latest book, Drive. These two schools are also representative of a key theme in Seth Godin’s newest, Linchpin, that we are churning out future “factory workers” when we should be developing artists.

More on that tomorrow in my review of Linchpin.

I usually refrain from writing anything that is overly personal here on this blog, but my dad deserves much of the credit for my interests and my direction in life. The things that make their way onto this blog are things that he and I would no doubt have spent many hours discussing over the years.

My sense of humor, my interest in how things work, and an unquenchable curiosity about the connectedness of everything can be directly traced back to the time he and spent together watching Monty Python’s Flying Circus and James Burke’s Connections on PBS during my formative years. The former gave me an appreciation of why we shouldn’t take anything too seriously, and the latter was the catalyst that eventually led me down the path of complexity and knowledge management.

My appreciation for the importance of doing a job well, and for taking care of the people for whom you are responsible, come from his willingness to take me along on the job – he was a Roadmaster for the Missouri Pacific Railroad. This came in very handy in my early career as an Army officer. Aside from the sorrow inherent in losing a parent so early, I was also saddened by the fact that he didn’t live to see me receive my commission and that he and I never had a chance to swap “war stories” about life as a leader of men.

My greatest sadness from his early death is that he never really got to know my wife, Julie, and that he never had the opportunity to meet his grandkids. I am very happy that Julie and dad did meet, even if only twice and then only briefly. My sons would only have benefited from knowing my dad, and I daresay he would have “corrupted” them even more than I have managed to do on my own. I can only imagine how dad would have reacted to Zeke’s autism, but I have the feeling he would have taken it in stride and treated Zeke just like any other kid.

Although I am saddened by the time I’ve not had with my dad for the past 20+ years, I am very thankful for the time I did have with him. Like any teenager / young adult, I have the feeling I didn’t appreciate him as much as I probably should have at the time. Like any parent of teenagers, I have the feeling that my kids don’t appreciate me as much as I think they should. I can only hope that one day they will look back on this time in our lives and appreciate it as much as I do mine.

So, on this day of thanks giving I would like to say, “Thanks, Dad.”

And Happy Birthday.

Before I go any further here, let me say emphatically and without qualification that I don’t believe helicopter parents – or any parent, for that matter – can cause autism by spending too much (or too little) time and attention on their kids.

I do think, however, that helicopter parents may play a potentially significant role in the ever increasing number of autism diagnoses.  Consider this definition of helicopter parents from wikipedia:

Helicopter parent is a colloquial, early 21st-century term for a parent who pays extremely close attention to his or her child’s or children’s experiences and problems, particularly at educational institutions…. Helicopters parents are so named because, like helicopters, they hover closely overhead, rarely out of reach, whether their children need them or not.

Who better to recognize early signs of autism and bring them to the attention of a doctor for evaluation. So in addition to “increased awareness of autism” as a possible reason for the increased number of diagnoses, we should also consider that “increased awareness of your child” might be contributing to the number of people who have their children evaluated. Which in turn will lead to a higher number of diagnoses.

The interesting thing here, at least to me, is that once a child is diagnosed as autistic the natural tendency of parents, especially those who are already “helicopter parents”, is to become even more involved in their kids lives, to become more overprotective. The nature and structure of our society, especially our education system, builds on this natural tendency to make it for all intents and purposes a necessity.

The challenge for parents is to figure out how to remain involved, as an advocate, in their child’s life without trying to live their child’s life for them. They need to figure out how to evolve, over time, from being a helicopter parent to a young child to being a slow-parent to a young adult.

If only it were as easy to do as to say.

Parenting an autistic child is, first and foremost, nothing more – and nothing less – than parenting a child. Yes it is different, and sometimes (OK, much of the time) more difficult than being the parent of a “normal” child, but that doesn’t change the fundamental nature of being a parent.

Parenting is hard. We try and try and try to get our kids to do something, understand something, say something. They go for a long time, apparently ignoring (avoiding?) all of our best attempts. Then, all of a sudden, when we aren’t really looking (or when we’ve kind of given up), they do it, understand it, say it.

At those moments we feel good, not just for our kids and their accomplishments but for ourselves. Sometimes it is hard to put in the long hours, day after day, never quite knowing if it will pay off or not. This is especially true for the parents of autistic kids. But what can you do?

The following quote from George Leonard’s The Way of Aikido applies as much to parenting as it does to any other endeavor to which we apply ourselves.

What we call “mastery” can be defined as that mysterious process through which what is at first difficult or even impossible becomes easy and pleasurable through diligent, patient, long-term practice. Most learning occurs while we are on the plateau, when it seems we are making no progress at all. The spurt upward towards mastery merely marks the moment when the results of your training “clicks in.”

To learn anything significant…you must be willing to spend most of your time on the plateau. [T]o join the on the path of mastery, it’s best to love the plateau, to take delight in regular practice not just for the extrinsic rewards it brings, but for its own sake.

Another way of looking at it comes from a saying I heard a while back:

A truly happy person enjoys the scenery on a detour.

How’s the scenery where you’re at?

This modified version of something I originally wrote in February 2006 was inspired by a tweet today from John E. Smith, aka @StratLearner