Ounce of Perception

I first mentioned this tweet from @codinghorror in my review of StrangeLoop 2010.

It has stuck with me through the years, and always seems to pop up when it’s needed. Not too long ago (wow – the better part of a year), I tweeted my own variation on this, exploring a bit the “is such crap” part of Jeff’s tweet.

Is safe better than sorry?

It all depends on the context. How you define “safe” and “sorry”, the time scale in which you’re working. What you are willing to give up for what you want to achieve. What you are willing to tolerate. What you want to have written across your tombstone, or in the history books, when your time on this earth inevitably ends.

Is safe really better than sorry?

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Ounce of Perception

Fourth and inches

Chances are you’ve heard the saying, “Won the battle but lost the war.” While it is hard to willingly accept defeat or failure, sometimes your best strategy in a given situation is to not give it your all. To not try your absolute hardest to be successful. To not try to win at the specific task at hand. To lose a battle so you can win the war.

In baseball, a manager may have a batter sacrifice (bunt or fly) themselves to advance another runner. Or have a pitcher intentionally walk a good batter to get to a relatively weaker batter. In American football, most teams choose to kick – either a punt or field goal – on fourth down instead of going for it. In basketball, coaches may call for intentional fouls late in a game to prevent a sure two by the opponent and risk a 1-and-1 foul shot situation. In chess, a player will intentionally sacrifice pieces to improve board position. You get the idea.

What each of these situations have in common, of course, is that the goal is not to get an individual hit, or out, or touchdown. The goal is to win the game, and ultimately a tournament or season. You weigh the risk of doing what is typical against the potential benefit or cost in terms of that goal of winning. You may not “go for it” on fourth and inches early in the game deep in your own half of the field, but you probably will if it is late in the game deep in your opponent’s end and you’re down by four points. Context is key.

Of course, no one would ever intentionally lose an actual game. Or would they? Depends on the context.

During the 2012 Summer Olympics several teams were disqualified and removed from the Badminton competition for deliberately trying to lose a game. From the outside this seemed crazy, and the crowds at the games were rightfully angry at what they were seeing. Did I mention that these teams were playing against each other, both of them intentionally trying to lose.

But for the teams at the time the strategy made perfect sense in the context of their ultimate objective – Olympic gold. For various reasons, the rules for the badminton tournament were changed going into the Olympics. The teams who wanted to lose games on purpose were simply adjusting their strategy on the court to increase their chances to win gold based on these new rules.

I say “simply”, but the whole situation was anything but simple. The rule-makers had failed to consider this second order effect of changing the rules, and the athletes had failed to take into account the reactions of the fans and officials at their blatantly unsportsmanlike conduct. And so they were disqualified, even though they hadn’t technically broken any rules.

They won the battle, but lost the war.

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Pound of Obscure

Different – and normal – are in the eye of the beholder

What does it mean to be normal? What does it mean to be different? These are big questions in any discussion about autism or other disabilities. The term “disabilities” itself begs this question, since a disability is defined based on “normal”.

I like what Kristin has to say on the matter (the emphasis is hers):

“Normal” is such a complicated word.

We each grow up with our own entrenched ideas of what normal is, which means, of course, there is no such thing. Yet the world loves to pretend like there is—if normal doesn’t exist, exactly, then at least there’s a perceived ideal normalcy that we should all strive for, or even pretend to have grasped….

There is no “normal”—at least not in a societal sense—and we need to stop pretending there is. We need to stop talking about it, observing the world through it, and assuming it as we report on and read the news.

Most of all, we actively need to teach our kids to identify the falacies embedded in “normal,” and see through to the other side…. We need to embrace rather than hide what makes us different. We need to prove to the world that what they see as “messed up” can be a very beautiful thing.

What I like even more is that Kristin is not talking about autism here, or any other disability for that matter. These are not questions limited to autism and autism awareness, they are questions for us as a whole.

Different, as Kristin says, is the new normal. Time to get used to it.

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Pound of Obscure

Take time to listen, and to learn their language

Open and clear communications is one of the most important things between parents and their kids, and a lot of parents spend a lot of time trying to figure out how to do this. Read just about any book on how to improve your communications skills and you will find that one of the most important aspects of interpersonal communications is the ability to listen. 

Unless, of course, you are reading a book about helping autistic people “learn to communicate”, in which case it is all about trying to get them to listen, and pay attention, to you; very rarely will those types of books try to help you, a non-autistic person, figure out how to listen to an autistic person.

In fact, the very definition of autism in the DSM-IV is based on, among other things, “qualitative impairments in communications.”  What the DSM is really saying is that autistics are autistic because they don’t communicate with non-autistic people in a way that non-autistic people can understand and they don’t understand the way non-autistics communicate.  Almost like they speak a different language.

As if communications is something that autistics can do on their own. 

Communication is a two way street for parents and their kids. This doesn’t change just because a kid is autistic. In fact, it is even more important then, because in many qualitative ways, the parent and the child are speaking different languages.

Unfortunately, there is no Rosetta Stone to help out. But there are plenty of other parents, and plenty of autistic adults, who are willing to help you out.

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Pound of Obscure

Don’t ask me, ask him (about the autism C-word)

A few years ago, a friend asked me the question: “If someone told you there was a pill you could give your son that would cure his autism overnight, would you give it to him?” Sounds like an easy question, right?

I hadn’t really thought much about it for some time, as it had been nearly ten years since his autism diagnosis, so I answered with a very non-committal, “I don’t know, I guess so.” That evening I gave the question some more serious thought, and was surprised by what I learned.

If the child study team that gave us the diagnosis had asked me that question right after giving us the diagnosis, when our son was just barely three years old, I would not have hesitated. I would have given him the pill right then and there, no questions asked. (Well, maybe “do you take credit cards?”) But if you had asked me five or six years later, as my son approached 10, my answer would not have been so quick in coming, or quite so easy to make.

At almost 10, he was still autistic, but he was so much more. The more I thought about it, the more I realized that it would be impossible to separate his autism from the rest of him. If we cured the autism, what would be left? Or, I should say, who would be left? Would it be the son I knew and loved, or would it be a “new” child that I would need to get to know all over again? Would I like this new child, this new addition to the family? Would he like who he had become?

Ask me now, when my son is nearly 20, and it would be even harder for me to answer. Although in some ways it would be much easier, because what I’ve realized is that at this point in his life it is not my place to make that decision for him. If someone came to me today and asked that question I would very quickly respond, “Don’t ask me, ask him; it’s his decision to make, not mine.”

This may be a surprising answer to those of you that don’t have experience with autism. But if you are a parent, you know exactly what I’m talking about. When our kids are young, it is up to us to guide them, direct them, and protect them. As they get older, we help them discover who they are and what they want to be. And then we “let go,” we let them leave the nest.

It is the same for out autistic kids, even if the path is a bit longer or rockier. It is, after all, their life to live.

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Pound of Obscure

Autistic kids – and their parents – deserve to have fun, too

Many parents of children diagnosed as autistic spend a large majority – sometimes all – of their “free” time trying to make their child “more normal” or “less autistic”, and not enough time on letting their child just be a kid. This is also true – maybe more so – at school, where the focus is often a single-minded (dare I say, “autistic”) dedication to implementing an IEP.

Many IEPs are so focused on making kids normal that they deny kids the chance to be part of a normal environment. It is not uncommon, for example, for schools to take autistic students on “life skills” field trips to a grocery store or McDonald’s while their classmates take a trip to a museum or other entertaining – and educational – locale. Life is for living, and this is as true for our autistic children as it is for our non-autistic children.

In her book Get Out, Explore, and Have Fun!: How Families of Children With Autism or Asperger Syndrome Can Get the Most Out of Community Activities, autism parent and blogger Lisa Jo Rudy addresses these questions, that really fall into two distinct categories:

  1. Why should you “get out, explore, and have fun” with your autistic child?
  2. How do you do this?

The first two chapters of the book should be required reading for all parents of children who receive a diagnosis of autism, that’s how important her message is in answering the “why” question. If autistic kids are never given a chance to experience life, how will we – or they – ever know what they want from life?

Lisa spends the bulk of the book exploring the “how” of getting out. As the parent of an 18 year old autistic son who has gotten out there, explored, and had fun, I can say that she has done an excellent job compiling not only lists of possible activities, but the good and potential bad of each as well as tips on how to make sure the experiences are valuable ones.

What I most appreciated in the “how” section is that she doesn’t sugar coat anything. Far from being pessimistic about things, she is simply honest about what you are likely to experience. She also reminds us to be realistic in what we expect of our kids, and of those we interact with “out there”. Even though the “why” applies equally to all kids, the challenges of the “how” will vary. Autism is, after all, a spectrum, and the experiences parents will have when they “get out” will cover a wide spectrum as well.

Only parents can appreciate the challenges they will face with their own kids in trying to get out there. My only suggestion here is that you lean toward stretching your boundaries, and your kid’s, by trying something just a little bit harder than what you think you can do. You will find that this can be hard work, but you will also see that it is worth every ounce of sweat you put into it.

If you are the parent of a young – or not so young – autistic child, you should get and read this book. And give a copy to your child’s teacher, their IEP case worker, the IEP team.

Life is for living, even for an autistic child, and this book reminds us why this is true and how to make it happen.

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