But most autism parenting stories are not positive, or about doing our best to understand what our autistic kids need and deserve. In recent “autism parent” memoirs like Judith Newman’s To Siri With Love and Whitney Ellenby’s Autism Uncensored, the authors hang their kids out to dry for being autistic and having intensely legitimate autistic needs, while centering the parent-narrators as victims of that disembodied demon, “autism.” That these stories keep getting green-lit is both an embarrassment and a tragedy.
The events in the book take place in the late ‘90s and early ‘00s. Sadly, things probably haven’t changed much in the past few years. (I’ve hear that evidence of this can be found in Jenny McCarthy’s recent book about her autistic son, but I’ve not been able to get myself to read it.)
Disappointing, an embarrassment and tragedy indeed, that these types of books are still the ones that people want to write. And, perhaps worse, to read.
The neurodiversity movement has been important for shifting what is meant by “human” rights so that both speaking and non-speaking autistics obtain rights to access – be it a communication device, support for that device and for daily life, education, and community inclusion. We remember, however, that these methods of inclusion have, so far, been extensions to the neurotypical way of life – an architecture. We ask, now, how neurodiversity can re-form the architecture itself. What is neurodiversity becoming? How are we becoming with neurodiversity?
A lot of the time, when autistic people complain that autistic characters are unrealistic, it’s presumed to be an issue of a character not representing the traits or experiences of a certain faction of the autistic community, and we get responses like “But one character can never represent all autistic people.
But that isn’t the problem. It’s not that they’re not exactly like ourselves; it’s that they have no depth or complexity because they have no lived experience, because their creators didn’t know how to give them one.
Here are a couple of stories I’d like to share on the idea 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 about a friend of mine, shows the importance of ensuring shared understanding in a shared context and how easy it can be to not have it.
You know the way home, right?
My 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 (nearly 25 years) together, 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. So understanding where he was coming from allowed me to answer the question he was actually wanting an answer for. 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 out rock climbing. 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 friend – we’ll call him Dave – was watching the other pair climb. And good thing he was.
When 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, my friend, was watching all of this and 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.
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.
The problem with putting a label on something is that it becomes all too tempting to commoditize anything that uses the label, to standardize until everything in that label can be turned into a checklist or piece of software. My first real experience with this was with Knowledge Management. So much promise when I first came across the concept and started practicing it in the late ’90s, it wasn’t long (early ’00s) before KM was mostly synonymous with document/content/information management. An inherently complex endeavor well suited to navigating uncertainty was turned into an attempt to capture knowledge as if it were some static thing, to turn every situation into something that can be solved with a past best practice.
I also saw this in my personal life, as I learned more and more about autism and the lives of autistic people. As the parent of an autistic son, I had a lot to learn. The most important lesson I learned was, “If you’ve met one autistic person, you’ve met one autistic person.” And yet, it seemed as if everyone was trying to make me believe that all autistic children were the same, that the “cause” of their autism was the same, and that if I would only do [insert some craziness here] then they would no longer be autistic, or they would be better able to cope, or whatever. Ooh, look, there’s a label, let’s come up with a way to standardize that and get people to use (aka buy) our method to do something with it. Though there may have been some sincere interest in help parents help their kids, mostly it seemed to be about profiting from the situation without worrying about actually understanding the situation.
More recently I’ve been learning about Agile. When I read the original Agile Manifesto I couldn’t help thinking, “Exactly.” This is how I’ve approached most things throughout my career, even though I’m not a developer and don’t work in an “agile shop”. But then I dig deeper and realize that Agile is apparently no different from that early experience with KM. A great idea corrupted by people interested not in the ideas themselves, but in somehow profiting from those ideas. Methodologies and frameworks and do it this way exactly you can’t mix and match because if you do then it is not [insert framework]. And oh by the way you need to take this certification course and take the test because if you don’t then no one will hire you.
OK OK, probably a bit harsh.
All is not lost when it comes to Agile, at least from this beginner’s mind. (I’ve kind of given up on KM.) Ideas such as Modern Agile, Agility Scales, and others give me hope that I’m not the only one that thinks this might be the case. I don’t know nearly enough about all of the hundreds (thousands?) of frameworks out there to say that I can use any of them, but I do understand and apply an agile mindset.
I’m still working through these ideas. Would love to hear your thoughts.
I was at a local big-box store the other day picking up some hardware for a home improvement project and had the need to visit the men’s room. It is a large store and so has a relatively spacious men’s room, with the sinks just inside the entry followed by a row of four urinals. As I walked in I was struck by the fact that the four urinals appeared to be exactly the same, except for one detail. If you can see the featured image of this post, I’m sure you know what I’m talking about.
I couldn’t help wondering, “Why didn’t they just install them all that low to the ground?”
Of course, that was a somewhat rhetorical question to myself because I can easily visualize how the design process went.
Based on the size of the store, the building codes require us to have four urinals. Let’s go ahead and put them along this wall here and install them at the standard height. Oh, except for one that needs to be lower because, well, you know, the “rules”. Left or right side? Doesn’t matter, as long as we have a short one.
And as a result only one of the urinals was installed lower to the ground, because that was all that was required.
It would be easy enough to say that “accessibility” was not considered in the design process for this men’s room, or that it wasn’t sufficiently considered. I would argue, however, that this design is very much based on a consideration of accessibility. It’s just that the accessibility considered was exclusionary and not inclusionary.
Here’s what I mean.
Back when modern urinals were first designed to be more than an open depression or slit in the ground that men stood around to, well, you know, the only people who would ever use them would most likely be adult men. There was little or no effort made to make it possible for those with physical handicaps to even get into the building, much less any thought given to how they might use the restroom. So the urinals were designed to be exclusivelyaccessible to adult men who could stand up in front of the urinal. (To be clear, this is just an assumption, my impression based on my understanding of history in general.)
Fast forward to today when we know better and make more effort, at least on paper, to make access to spaces and facilities more inclusively accessible. The exclusionary approach is so ingrained in the culture and in design that making something accessible for the “other” is seen as something separate, something that needs to be done because someone somewhere said it had to be done.
An inclusively accessible design for this men’s room would have, in my mind anyway, had four urinals closer to the ground than the old standard (it should become an old standard, anyway). To take it even further, the design and construction standard (and building codes, to be sure) should be changed to reflect this inclusive design approach.
If one of the urinals is going to be lower to the ground than the “usual”, why not just make them all lower to the ground? In this way you are meeting the needs of all (or at least more) with one simple change.
To be sure, inclusionary accessibility is more difficult in some situations than in others. The urinal example above is relatively straightforward compared, for example, to the challenges software and website developers have. Unlike the physical example of the urinal, which can easily accommodate all users with a single configuration, software developers have to understand and contend with often competing and contrary needs.
A basic example is the user interface of a web site in a web browser. Just take a moment and consider how you use the web browser on your laptop. Now, close your eyes and think about how you would use the web browser on your laptop if you couldn’t see it.
For the person who can see the screen, visual cues are typically sufficient and they would likely not want to hear a description of the screen or the layout read to them as they navigate the page. But for the person who can’t see the screen, the actual visual design of the site is unimportant and, for all intents and purposes, of no value. They need another way with which to navigate and to consume the content.
Which gets us back, once again, to the prevalence of exclusionary accessibility in design.
Blind people aren’t going to use a web browser, how would they see it? So we’ll just design it based on people being able to see what they are doing.
It’s very hard for members of the three groups to find common ground. People tend to see autism through the lens of personal experience. An autistic college student who has trouble with organization and social skills is likely to view autism very differently from a parent whose child is non verbal, cognitively disabled, and self injurious.
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.
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.
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.