The Reason I Jump

Have you read “The Reason I Jump”, the book written by the autistic child If so, what were your thoughts about it?

My wife first brought this book to my attention last month, and shortly thereafter I saw the Daily Show interview with David Mitchell, author of Cloud Atlas and translator of The Reason I Jump. I swiped my wife’s Kindle and read it in roughly 24 hours.

I am of two minds.

On the one hand, I found it interesting and engrossing. I did not enjoy it, exactly — the author, Naoki Higashida, talks at great lengths about what a burden he feels he is on others — But I am glad to have read it.

On the other hand, I have some concerns about the book. For instance Higashida often speaks on behalf of all people autism, as if they are of a single mind. Here is a typical excerpt (emphasis added):

Why do you memorize train timetables and calendars?

Because it’s fun! We get a real kick out of numbers, us people with autism. Numbers are fixed, unchanging things. The number 1, for example, is only ever, ever the number 1. That simplicity, that clearness, it’s so comforting to us …  Invisible things like human relationships and ambiguous expressions, however, these are difficult for us people with autism to get our heads around.

It is my belief, as I’ve stated here before, that very little can be generalized about people with autism, as they are as distinct from one another as they are from their neurotypical peers. I don’t begrudge Higashida for writing in this style, but worry that readers will assume that this one child’s experiences are universal.

Indeed David Mitchell, who has a son with autism, seems to view Higashida as something of a spokesman. Here is what he wrote in an article for The Guardian:

I felt as if my own son was responding to my own queries about what it’s like to live inside an autistic mind. Why do you have meltdowns? How do you view memory, time and beauty? For the first time I had answers, not just theories.

I have no qualms about “felt as if my son was responding to my own queries”, but “I had answers” strikes me as worrisome.

Elsewhere in that article Mitchell recounts the famous (at least in special needs circles) Welcome to Holland essay, and says he heard it “via a Jewish friend’s rabbi”; in fact it is very easy to find the actual author of the piece (Emily Kingsley), and odd that Mitchell, a writer himself, wouldn’t bother to look. And according to The New York Times, “[Mitchell and Higashida] have never met in person, and Higashida had almost no involvement in the English edition.” All of this makes me leery of the book’s provenance.

So while I wouldn’t discourage anyone from reading The Reason I Jump, I haven’t been quick to recommend it either.

Introduction of The Reason I Jump on NPR | Excerpt from Parade Magazine | Review from The New York Times | Review from the AV Club

* * *

Follow the Leader

Here’s something I noticed about my son even before we suspected he may have ASD: other children gravitated to him. This was especially apparent on the playground, where you often have a gaggle of kids who do not know one another. We would let him loose, and he would quickly accumulate an entourage.

As usual, I have a hypothesis.

One characteristics of those with ASD is that they don’t imitate others as frequently as do those without the condition. A recent study in the journal Biology suggests that that this is a matter of “efficiency” — children with autism will copy the essence of an action, but leave out anything “silly”:

After seeing an actor demonstrate actions on a novel object, typically developing (TD) children faithfully copy both necessary and visibly unnecessary actions. This ‘overimitation’ is commonly described in terms of learning about the object, but may also reflect a social process such as the child’s motivation to affiliate with the demonstrator or to conform to perceived norms …. [in this study] we report a significant reduction in overimitation in children with autism spectrum conditions (ASC). This is coherent with reports that these children have profound difficulties with social engagement and do not spontaneously imitate action style.

On a playground everything is an “unnecessary action”, and my son shows no inclination to imitate others. His peers, however, feel a social need to copy, and therefore cast around for a trailblazer; when it becomes apparent that my son is just such a nonconformist, they naturally fall into his orbit.

I’ve observed this phenomenon less and less as he has gotten older. Now that he is notably “different”, children his age are less likely to see him as a role model. Plus, his behavior on the playground is entirely physical — swinging on the monkey bars and going down the slide — while most other children have moved on to more social activities, such as chatting or playing tag.

But younger children continue to find him fascinating. They seem enthralled by his drive, his disregard for what others are doing, and his immunity to peer pressure. He behaves like a natural born leader, and some can’t help but follow.

* * *

Calculus

Thank you for your blog. I’ve frequently enjoyed your writing, but as the mother if an autistic four-year-old boy, I’ve been reading closely of late. I was wondering if you might be willing to write about whether or not having a child with autism has had any effect on your and your wife’s decisions about family size? I know it is a very personal question, but it is one I struggle with a great deal, and so I very much appreciate hearing perspectives from other parents who have kids with A.S.D.s.

One child was always our plan.

Growing up I was led to believe that the “only child” would inevitably wind up spoiled or lonely, but I saw too many examples to the contrary to believe that by the time we were married. On top of that, my wife and I are thoroughly “urban”, in the sense that we cleave to many of the characteristics of those who live in cities: our politics are progressive, we don’t feel a need for a huge home, and a small family strikes us as the ideal.

That’s not to say that we wouldn’t have changed our minds, as so many do after the first child arrives on the scene. But several factors contributed to our resolve in this matter.

For one thing, the chance of our son becoming spoiled or lonely did not seem as big a threat as it would have been with a neurotypical child. This didn’t discourage us from a second child, but it perhaps removed some incentive.

For another, raising a child with autism requires more time and energy than does a neurotypical child, as you well know. Our friends had twins at around the same time as we had our son, and when they were all around five we reckoned that our overhead — one child with classic autism versus twins — was roughly the same.

And then there’s this: a couple who has had a child with ASD is at greater than average risk than the general population at having more with ASD.  That chance, according to this NIH autism fact sheet, is about 1 in 20. Those odds are high enough to deter me, even though my background in science tells me that, statistically, they probably shouldn’t.

And so, one child. That said, there is an argument for having another that, to my mind, I find somewhat compelling (even though, I euphemistically add, that particular avenue is closed to me). Barring something unexpected, our son will almost certainly outlive us. I think it’s unlikely that he will ever be able to care for himself, but a sibling could see to that care even after we are gone.

Have one child to care for another? This brand of cold calculus seems archaic, something a 17th century farmer would do when determining whether he had sufficient hands to work the fields in the coming years. But as I’m sure you’ve discovered, raising a child with ASD leads to all sorts of dilemmas that most need never consider.

* * *

Body Language

I describe my son as “largely non-verbal”, by which I mean that he scripts, and will make simple requests, but does not communicate abstract ideas. Even so, he and I have conversations of a sort. We just have to rely on something other than words.

When we are in the house he comes to “check in” often. If he finds me in an armchair he will first perch on the back, and then insinuate himself into the seat, wedging between me and the armrest. If I am walking around the house he will appear from nowhere and interact with me in some way, wrapping himself around my legs or giving me a squeeze on the arm.

Before bedtime, when we are supposed to be reading books together, he will demand to be tickled, and I inevitably comply. At some point I taught him to cry “Uncle!” when he wanted me to stop. That is what he yells when he’s had enough, even though he usually insists on more a few seconds later.

When we walk he will hold my hand for a spell, and then let go, and grab it again later, depending on his mood. Each engagement and disengagement is a little exchange.

Even playing on the swing feels like a dialogue. He does quite well without assistance, but asks me to push him regardless. As he ascends he often twists to look back at me; if I miss a push because I am goofing around on my phone, I get the same look of disapproval that I would get if I ignored someone during a discussion.

I work in a corporate environment, and much of my day is devoted to status meetings and planning meetings and the reading and writing of email. A staggering amount of our time and energy is devoted to communication, and we misunderstand each other as often as not. It’s exhausting.

In the evening I go home, and my son greets me with “beard!”, and I lower my face so he can feel the texture of my whiskers. It’s the most fulfilling conversation I have all day.

* * *

Opening Up

Email from a friend:

Saw your post on Facebook linking out to your blog and spent the last 30+ minutes devouring the information and went on a roller coaster ride of emotions. In the last 5? 6? 7? years that I’ve known you, you’ve been such a private person when it comes to your family and I almost felt like I was spying …

And a text from a friend:

I saw that you are finally sharing intimacies about raising your son – wow, very proud of you

The matters I am sharing openly on this site are not those that I often talk about in social situations. There are a couple of reasons for this.

Firstly, so much about raising a kid with autism is out of the norm that it’s difficult to talk about any part of it without providing the full context, at a length (and emotional weight) ill-suited for casual chit-chat. When acquaintances discover that I have a nine-year-old son, for example, they often ask things like, “is he excited for the new Star Wars movies?”, and I don’t know where to begin in answering. Do I say that he’s never seen the Star Wars films and, were I to screen them, he would quickly lose interest because he doesn’t follow narratives? Do I say that, so far as I know, he doesn’t fully grasp the concept of “future things”? Do I say that, even if he were excited about the forthcoming films, he wouldn’t know how to express that to me? Maybe it’s just laziness on my part, but I find it easier to simply say something along the lines of, “he’s not really a fan” and leave it at that.

The second reason is harder for me to articulate. Autism is kind of the “concern du jour” right now, and much of the media coverage focuses on how hard it is on the parents. When I talk about my son is social setting, I worry that the listener will call to mind some 20/20 episode in which they emphasized the negative, and assume that is an accurate depiction of my life. There’s an element of machismo in this — I loathe the idea of people “feeling sorry” for me — but more than that, it’s simply incorrect. Raising a child with autism has many challenges, for sure, but so does raising a neurotypical child, and they are not lessened by their ubiquity.

This is really just another manifestation of the “lack of context” issue — lacking the full story, I worry that people will misinterpret my words. But while I don’t often talk about my son in casual situations, I won’t hesitate to bring him to social functions. For instance, this summer he and I met the author of the above email at the beach one Saturday afternoon. My son is an excellent swimmer, but I still need to keep an eye on him while he’s in the water to ensure that he doesn’t range too far. He’s also constantly in motion, which requires constant vigilance. It’s a fair amount of effort, and I’m sure that was obvious to my friend as we paced up and down the sand, making conversation as I kept on eye on my kiddo. But I’m sure it was equally obvious that he brings me so much joy that I feel like I am getting an enormous return on my investment. What would take me an hour to explain become immediately apparent to anyone who actually sees us together.

The purpose of this project is, in part, to address these two issues. But it’s also an acknowledgement that I don’t give people enough credit. My habit of reticence is not helping them or me, and it is something I am working to change.

* * *

Outside the Box

* * *

ABA

At the conclusion of the Toddler Assessment Project, in which my son was diagnosed, the researchers provided us with counseling on our options for treatment. At the time, there were two types of treatment with enough evidence of efficacy for them to recommend: DIR (Developmental, Individual Differences, Relationship-Based Approach, also known as “Floortime”) and ABA (Applied Behavior Analysis). They gave the edge to ABA and, after conducting some research on our own, we came to agree.

Since then,my son has had anywhere from 15 to 30 hours of ABA a week. Originally we took him to various clinics for the therapy, but now he gets much of it at his school, which is certified to provide such services. Still, on the weekend, we often have two 90-minute in-home session, one on Saturday and one on Sunday.

image

ABA can trace its pedigree back to the work of B.F. Skinner and before. There is a lot of theory behind the technique, and it even comes with it’s own lexicon, but at its core it is the modification of behavior through reinforcement, punishment, and extinction.

In the treatment of autism, reinforcement plays the central role. My son, for instance, has a token board (seen in the background of picture above), and works toward filling it up by performing the requested tasks. Upon earning his final token, he receives some agreed upon reinforcement, such as a piece of candy, a trip to the backyard to play on the swing, or a few minutes with the iPad (although a even a few minutes of screen time can excite him to the point where further learning is difficult). Occasionally he will refuse to continue, or just get too silly to listen to his therapist, at which point he will fail to earn a token; this is the extent of “punishment”, although it is generally effective in getting him back on task. In the sessions I’ve observed, he is generally an industrious and diligent worker, although once he starts joking around or, worse, getting agitated, things can go off the rails for a bit.

(Despite the ominous name, “extinction” simply refers to the phasing out of undesirable behavior, either through intervention, or by identifying and eliminating the antecedent. For instance,when my son was pinching his own arms to the point where they bruised, the therapists quickly learned to predict when he was going to do so, intercede, and then reinforce his decision not to do so.)

My son’s programs usually revolve around language (e.g. use of prepositions and pronouns), academics (math, familiarity with the seasons), social skills (initiating conversation, turn taking), and life skills (tooth brushing, clock reading). Data is collected every time he does a program so they can assess his progress, and when he meets some set criteria of success they retire the program (although will periodically bring it back up to ensure that there is no regression). All of his therapists meet once a month to review the collected data and adjust his programs. It’s all very scientific which, as I have mentioned before, we find comforting.

When I describe ABA works to the layman, they sometimes find it unsettling, like something out of Clockwork Orange or LOST. It’s like he’s a robot and you’re programming him, I’ve had friends observe. I agree in principle, but the more you learn about ABA, the more you realize that it is everywhere, not just in autism therapy. Its difference from “regular” instruction — that of giving good and bad grades to students based on their performance, in an attempt to motivate them to excel — is really just a matter of rigor. ABA does nakedly what regular schools couch in the language of inspiration. Think, for instance, of a summer reading program, where recording the titles of 20 books read earns the child entrance to an ice cream social. That’s essentially ABA, minus the data collection and verification aspect.

And it certainly doesn’t end at graduation. Your coffee shop punchcard is not that different from a token board. Nor is the accumulation of points until you ”level up” in Candy Crush. I always find it funny when folks talk about the principles of ABA as if they have just invented them. Every time someone mentions “Gameification” as the hot new trend I think, “pff, my kid was doing that way before it was cool”.

* * *

A Simple Man

image

My son is essentially a clean-shaven Ron Swanson.

We struggle to find dinner foods that he will try, and his lunch often comes home from school half eaten, but serving him breakfast is like putting paper in a shredder. Waffles, french toast, pancakes — our expenditures on maple syrup may well be keeping Canada afloat. He likes toast and bagels and cereal and eggs. When his school made him a custom shirt, printing onto the back the quotation for which he is most well-known, this is what he got.

image

As for the other half of the equation … well, let’s just say many of his teachers, aides, and therapists are in fact dark-haired woman, and he is uncharacteristically compliant in their company. He will basically do anything if it’s a pretty girl asking. My wife has a theory as to where he gets this.

image

* * *

Lord of the Rings

image

My son loves the playground. I sometimes joke that he enjoys monkey bars even more than I enjoy human bars.

Actually, it’s truer to say that he loves playground equipment, regardless of where it’s found. When we installed a pull-up bar in our last home, it quickly became his favorite hangout, so to speak. Given a choice of activities, “hang on the bar!” was often his pick, and he would while away an hour swinging like a trapeze artist preparing to dismount.

In the absence of equipment designed for hanging, he will quickly press something else into service: a door frame, an overhead pipe, even the top edge of the refrigerator. We eventually broke him of the habit of hanging from curtain rods, but only after each had been torn from the wall at least once.

When we moved into our new home, our first order of business was to erect a swing set in the backyard, one that would accommodate him even after he grows out of what is typically considered to be the swing set age range.  We ended up with a monstrosity that looks like a Soviet-era oil rig, but also one that will survive the apocalypse with little more than scuffing.

image

Yesterday my son and I were in the backyard well after his bedtime, playing on the swings in the near dark. Leaping off is his new favorite thing, and he would do so seemingly at random. I would push, the swing would reach its zenith, and he would simply continue on, arcing into the night.

* * *

Lack of Control

I was an employee of the Fred Hutchinson Cancer Research Center when we first began to suspect that our son had ASD. My job at the time was to write programs to analyze data collected in various drug protocols. I didn’t need to know anything about clinical trials to do my job, but after a few years I picked up quite a bit via osmosis. I could speak knowledgeably about phases and informed consent, blinding and double-blinding, and the critical distinction between causation and correlation.

My wife and I also come from scientific backgrounds: she has a degree in chemistry (and works as a botanist), I have a degree in environmental science (and work in the field of software engineering). Not to brag, but we know our way around a null hypothesis.

So when we were approached by the University of Washington Autism Clinic, and asked if we wanted to participate in the Toddler Assessment Project, we enthusiastically agreed. Not only would we get a diagnosis out of the deal, but our participation would help the doctors identify the early signs of autism in other children.

Our son was given a battery of standardized tests and exams before an official assessment was made. The rigor of the process and the staff’s commitment to objective, impartial conclusions were a great comfort to us. They never hesitated to explain to us exactly what they were doing and why; better yet, they were very open about what they didn’t know. I sat by the MRI operator as he gave me a guided tour of my son’s brain, freely admitting that they didn’t know specifically what they were looking for, but were gathering data to advance the science and aid in future diagnoses.

All of this was in stark contrast to our experiences after the study was concluded. When we began seeking treatment options for our son, we were inundated with suggestions from friends and family and casual acquaintances, ranging from the benign (vitamins) to the severe (chelation therapy). Each recommendation came with an assurance that the treatment had worked wonders for someone, be it the child of the speaker, or a son of a friend, or a kid they had read about on the internet.

These suggestions were well-meaning, and I sincerely appreciated the motives of those who made them, but they also gave me fits. Anecdotal evidence is anathema to disciples of the scientific method such as I, but in the fledgling field of autism treatment it was all anyone had to offer. And everything was proposed as possible treatments: dietary modification, craniosacral therapy, acupuncture, magnets, auditory integration training, horseback riding, supplements, pharmaceuticals, homeopathic tinctures. Pretty much every form of medicine, Western or Eastern or complementary or alternative, has at one time or another been championed as aiding, or even “curing”, those with autism.

But who really knows? In a clinical trial, you have an intervention group and a control group; you administer the drug or therapy to the first, and leave the latter unaffected. Then, after some period of time, you compare the results. Did the intervention group fare better than the control group, using whatever rigorously defined definition of “better” you’ve adopted? If so, then you had evidence—not proof, never proof—that the intervention was beneficial.

But when you introduce a treatment method to a three-year-old with autism, it is extraordinarily difficult to evaluate its efficacy. What if his communication skills suddenly increase? Isn’t that evidence? You can interpret it as such (and, if you are hoping that the treatment works, confirmation bias will ensure that you do), but maybe the jump in verbal skills was just a normal advance, something that would have happened even had you not administered anything.

Worse, from a clinical point of view, parents will often try several things at once, introducing three new supplements and altering the diet and enrolling the child in art therapy all in the same week, thereby ensuring that they will have no way to determine which of the treatments is responsible for which of the outcomes, assuming that the outcomes are a result of any of the intervention and not just a manifestation of the child’s natural development.

It is maddening. We tried a lot of things, and I’m not sure we can point to any of them and say with conviction that they “helped”, whatever that even means. Our son is on a gluten-free, casein-free diet, for instance, which we adopted shortly after his diagnosis because it is one of the few “alternative” treatments that actually has some scientific support (albeit a single study, with largely inconclusive findings). We keep him on this diet because GFCF foods have become so ubiquitous in Seattle that it’s no more difficult to stick to this diet than any other (protip: Udi’s), and also because … *shrug*, I dunno. Because maybe it’s helping? Because maybe he would have been “worse” had we not kept him on the diet?

That’s what you wind up doing: using an imaginary version of your own child, in a universe where you didn’t administer some treatment, as your control group. You can’t compare him to his peers, because every child with autism develops uniquely, thwarting your attempts to draw conclusions from differing parenting techniques.

Think of a baseball player with an elaborate ritual before every at-bat. He once touched the brim of his ballcap before hitting a home run, so now he always touches his ballcap while warming up; he once hit a triple after tapping his shoe with the bat three times, so shoe tapping goes into the routine. Now he can’t swing until he’s gone through a full minute of seemingly random actions and tics, some that may actually help, others that are pure superstition. He’s unconvinced that any one of them is effective, but he’d be a fool to tempt fate by stopping.

That’s what you become, as a parent of an autistic child. You try various things, latch onto those that preceded a positive development, and stick with them in the hope that you are getting some return for your investment. Empiricism is great on paper, but in the absence of evidence you go with your gut.

* * *