Shared understanding – two stories

The concept of shared understanding is important in all aspects of life, personal and professional, whenever more than one person is involved. But there is no real definition of what “shared understanding” entails; it’s more of a “know it when you see it” kind of thing.

Here are a couple of stories I’d like to share on the concept of shared understanding. The first, a conversation between me and my son, Zeke, highlights the importance of being aware of and understanding the context of a situation from different people’s perspective. The second, a story relayed to me by a friend, shows the importance of ensuring shared understanding in a shared context and how easy it can be to not have it. Even when you think you do.

You know the way home, right?

milToSTLMy son, Zeke, and I were in Milwaukee for the Midwest Gaming Classic. As we were walking from the hotel to the car getting ready to head home on Sunday morning, Zeke asked me, “You know the way home, right?”

A reasonable question, and one that I could honestly answer with yes. Which was the right answer, though as it turns out that was not the question he was actually asking.  What Zeke was really asking was, “Can we listen to the radio on the way home?”  A little background may be in order.

On the drive up to Milwaukee I used Google maps on my phone, connected to the car audio system, as a navigator to get us from home to the hotel. Because I wanted the navigation to come through the audio system, we were limited to listening to music or podcasts (or other apps) from my phone and couldn’t listen to the radio. So when Zeke asked if I knew the way home, he was really wondering if I needed to use Google maps to get us home.

If I had said, “No, I don’t know the way”, then he would have known that we wouldn’t be able to listen to the radio, and if I said “Yes” then we could listen to the radio. (If you’re wondering, we listened to a couple Premier League soccer matches and the first half of the Cardinals / Braves game.)

Because of our long history together (25 years now) I knew that he didn’t care whether or not I knew the way home. He knew that if I didn’t, I would simply use Google maps as my navigator. I did know that he cares about what we listen to in the car, that he prefers to listen to talk (usually NPR) or sports over music, and that he usually watches Premier League soccer on TV on Sunday mornings.

Understanding where he was coming from allowed me to answer the question he actually wanted an answer to. It’s probably worth noting at this point that Zeke is autistic and, while able to communicate verbally, has some unique challenges and methods in his communications. Developing this shared understanding has been critical for both of us to understand each other.

DO NOT LET GO, YOU ARE NOT ON BELAY!

Some friends were climbing at Horseshoe Canyon Ranch in Northwest Arkansas earlier this year. It was an especially nice weekend, so there were a lot of people out taking advantage. There was one route my friends wanted to attempt so they waited while another pair were climbing. While most of my group of friends were relaxing and just generally hanging out, one of the group – we’ll call him Dave – was watching the other pair climb. And good thing he was.

Credit: Lucas MarshallWhen a climber reaches the top of a route on lead, he will typically clip directly into the anchors and go off belay so that he can fix a rappel to get back down. Sometimes, though, he will set some gear and run the rope through the gear so he can be lowered down and the next climber can then top rope the route.

In this case, the climber did neither; instead, he down climbed to the last piece of protection he had placed on the way up, apparently with the expectation that his belayer would then lower him from that point. The belayer, however, was not aware of any of this, having expected that the climber had gone off belay at the anchor. (I think you can see where this is going.)

Dave, watching this unfold, saw that 1) the belayer had taken the climber off belay and 2) the climber was getting ready to let go of the rock and lean back to be lowered to the ground, which meant that 3) the climber was just about to plunge to his death. At which point Dave shouted at the top of his lungs, “DO NOT LET GO, YOU ARE NOT ON BELAY!”

The route this pair was climbing was an overhanging 5.11c, meaning that this was an experienced pair of climbers (5.11c is hard) and that when the climber is on the top half of the route the climber and belayer cannot see each other. The typical exchange when the climber gets to the top and clips into the anchor would be for the climber to shout down, “Off belay” (to let the belayer know that they can take him off belay) and the belayer shouting back up, “Belay is off” to make sure that the climber knows he is on his own.

In this case, the climber shouted something down, the belayer thought it was “Off belay”.  The pair thought they had a shared understanding of the situation, but they obviously did not. The climber had broken from the routine, while the belayer was following the routine because she didn’t know of the climber’s change.

Fortunately for this pair, and everyone at the crag that day, Dave’s warning was in time and successful in stopping the climber from letting go and leaning back.

The point?

The concept of shared understanding is important in all aspects of life, personal and professional, whenever more than one person is involved. But there is no real definition of what “shared understanding” entails; it’s more of a “know it when you see it” kind of thing. These two stories, hopefully, show what shared understanding might mean in different situations; one being a situation where two people are coming from a different context and one where they are coming from the same context.

Would love to hear some of your stories about shared understanding, or the lack thereof.

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.

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.

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.

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.

Devote more time to your kid’s strengths than their shortcomings

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.

Normal people aren’t normal either

I do not think everyone else is alike in every way. She has told me that Everyone knows this and Everyone does that, but I am not blind, just autistic…

Set in the near future (30 years or so), Elizabeth Moon‘s novel The Speed of Dark is the story of Lou Arrendale, an autistic man presented with the possibility of being cured, his contemplation of what his decision – either way – would mean, and the consequences of his eventual decision. As you might imagine, Lou gave quite a bit of consideration to what it means to be normal. (Even in the future, it seems, there is a desire to make people “normal”.)

I do not think everyone else is alike in every way. She [Dr. Fornum] has told me that Everyone knows this and Everyone does that, but I am not blind, just autistic, and I know that they know and do different things. The cars in the parking lot are different colors and sizes. Thirty-seven percent of them, this morning, are blue. Nine percent are oversize: trucks or vans. There are eighteen motorcycles in three racks, which would be six apiece, except that ten of them are in the back rack, near Maintenance. Different channels carry different programs; that would not happen if everyone were alike.

And some of his thoughts based on a specific situation:

Sometimes I wonder how normal normal people are, and I wonder the most in the grocery store. In our Daily Life Skills classes, we were taught to make a list and go directly from one aisle to another, checking off items on the list. Our teacher advised us to research prices ahead of time, in the newspaper, rather than compare prices while standing in the aisle. I thought- he told us – that he was teaching us how normal people shop.

But the man who is blocking the aisle in front of me has not had that lecture. He seems normal, but he is looking at every single jar of spaghetti sauce, comparing prices, reading labels. Beyond him, a short gray-haired woman with thick glasses is trying to peer past him at the same shelves; I think she wants one of the sauces on my side, but he is in the way and she is not willing to bother him. Neither am I.

As parents we often spend a lot of time trying to help our kids to fit in, to be normal (even as we ask them, “If everyone was jumping off a bridge, would you jump too?”). Of course, this is often because our kids want to fit in. And there is nothing wrong with that.

But if you find yourself trying to get your kid – autistic or not – to fit in, to be more normal even if they don’t want to be, take a moment to ask yourself why you are doing it. And think about what it is that you are trying to get them to do. Is it something that you think Everybody is doing, when in fact Nobody really is?