Q&A

Assorted questions from the abortive reddit AMAemail, and The Month of Son ask page.

A stereotype I have of people on the spectrum is that they don’t love in the way that neurotypical people do. Your descriptions of your time with him certainly sound affectionate. Do you think it is fondness or just familiarity on his part?

Both, I believe.

There is a set number of people with whom he will interact — family, friends of family, teachers, therapists — and he seems indifferent to the rest, so he’s not indiscriminate.  When we take him to the playground, for instance, he is the politest child you can imagine, patiently waiting his turn for the slide and never pushing past another kid. But he also does not interact with them socially. Compare this to how he behaves around people he knows. The more familiar he is with someone, the more likely he is to come hang around (or on) them, squeeze their arm, sit next to them on the couch, and so forth.

He gets excited when his grandparents visit, even to the point of insomnia if they arrive too late in the evening. To see him in those instances is to know that there is genuine affection, and not just familiarity.

 

Follow-up: Does he have aversions to some people?

Again, he only really reacts to those he is familiar with. But, yes, sometimes there are aversions. For instance, if he is watching TV and suspects that I might tell him to turn it off, my entrance into the family room is greeted with a hearty “PAPA GO AWAY!”

 

Do you have to speak to your son differently than you do to other kids his age?

While we pretty much know the extent of my son’s ability to express himself, it’s difficult to determine his receptive language. He’s certainly capable of understanding and following a wide range of simple commands, even those he has never before heard. For example, when I recently told him to “go downstairs and bring me the mouse,” he disappeared for a few moments and returned with the mouse in hand.  I had never uttered that exact request before, but he had no problem parsing it. This is in stark contrast to his expressive language, where he very rarely utters something new.

Even so, when making requests of this sort I tend to make them as simple as possible, and emphasize the key words. In the example above, my exact enunciation was probably more along the lines of “Go downstairs. And bring me the mouse.” We’ve noticed that we can chain together about three requests maximum, before he loses focus.

Conversationally, I speak to him as I would any other child his age. When we are in the car, or on a walk, I just chatter at him about whatever is on mind. I didn’t used to do this — for a while I thought there was “no point” in doing so, on the theory that he couldn’t comprehend what I was saying anyway —  but one day I realized that I didn’t really know if he could understand or not, and forced myself to keep up a one-sided conversation.

At first this felt very weird to me, a situation I called “the Reverse Harveyeffect.” In the play Harvey, you may recall, the protagonist holds animated conversations with a companion that only he can see, leading others to view him as insane; in my case I was speaking to a child that everyone could see, but that I alone “knew” couldn’t understand. But after a while this became natural to me, and I keep this monologue up whenever he and I are together. And I know he hears me, at the very least; heaven help me if I accidentally say “swimming pool”, for instance.

 

It’s often suggested that ASD has a heritable component. Do you buy that theory? Do you consider yourself 100% neurotypical?

I buy this hypothesis, yes. And although folks in IT self-diagnosing as slightly autistic has been all the rage ever since the Wired AQ Test was published, I’ll go ahead and do so anyway.

Ironically, I don’t think this is evident to my friends and acquaintances, because it’s something I’ve worked to overcome. As a child I was not super comfortable making eye contact, for instance, and this persisted into my teens. At some point I realized that this was a limitation in job interviews, where eye contact is viewed as a sign of confidence and trustworthiness, and so trained myself to hold eye contact more regularly. Now I can stare down the best of them.  Likewise, if you saw me at a party, and if i was making an effort to “fake it”, you would probably be unaware that I generally find parties unnerving.

 

What are your favorite/least favorite terms to refer to an autistic kid?  What are your favorite/least favorite terms to refer to a non-autistic kid?

Some people dislike the word “autistic”, because they feel it defines the child completely in terms of his or her disability, and prefer “person with autism”. I’m fine with either, but tend to use the “with autism” formulation because it’s just as easy, and doesn’t raise any hackles.

I have heard children with autism, especially those with Aspergers, referred to as “little professors”, which I find charming.

The term I generally use when referring to non-autistic children is “neurotypical”, because I prefer “typical” over “normal”, and because “neuro” clearly calls out the distinction.

 

Does your son enjoy reading?

It is one of his favorite activities. It is unclear how much he comprehends, but he’s always been fascinated with words.

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My So Serious?

Here is a candid shot of my son:

And here is posed photograph, taken seconds later:

As you can see, he has mastered the art of saying “cheese” without smiling.

Worse, we accidentally trained him to associated cameras with the saying of “cheese” rather than with smiling, so the face above is what appears in everything from school photos to pictures with Santa Claus.

It is a real problem but not one without a solution, as he demonstrated one afternoon by running into the kitchen like this:

Triptych

1. Shortly after my son was born, in the hospital delivery room, I stuck my tongue out at him. I had read that infants would imitate adults who did so in one of those innumerable baby books, but got no response. I tried several more times in the coming months, but don’t believe he ever mimicked my action.

I have often wondered is this was an early sign of his autism, despite the fact the researchers generally agree that it cannot be diagnosed prior to 18 months. If so, it would demonstrate that he was born with the condition, and it did not develop later as some people hypothesize.

I’m the first to admit that I may be misremembering this, so take it with a grain of salt.

2. Shortly after my son was diagnosed, at age three or four, I noticed something funny about his reaction to food.

He was (and remains) quite resistant to trying new things, and I would often go to great lengths to get him to at least taste some new foodstuff I was trying to introduce into his diet. Alas, all of my entreaties were met with “no!”  Inevitably, after much wheedling, I would take a bite of the thing myself while making loud “mmm-mmm-MMM” noises and announcing how delicious it was, trying to convince him to try it.

As I would bring the whatever to my open mouth, my son’s eyes would widen, and he would yell “no! NO!” all the louder. I have no way of knowing for sure, but it sometimes seemed as though he was unable to distinguish between my eating the food and his eating of the food. That is to say, it reacted as though I was somehow thwarting his will by putting the food into my own mouth, as if I had figured out a way to put it into his mouth despite his objections.

I don’t know if it was true or not. But on evenings when he was particularly stubborn, I would gleefully take bites of his refused food just to exact some revenge.

3. My son has trouble with pronouns, and doesn’t understand that you must reverse them when referring to someone else. If I say “do you want me to pick you up?” for instance, he will raise his arms and say, “pick you up!” If I ask, “Do you want mint gum or watermelon gum?”, he replies, “do you want watermelon gum.”

We moved a few months ago, and I recently took him to a new therapist for the first time. At the end of the hour, when they came out to the waiting room, I asked how it went.

“Great,” she said. “He was a little silly at first, but calmed down after 10 minutes and worked really hard.”

Then she paused for a moment, and got a queer look on her face. “One funny thing, though,” she added. “He kept saying that he wanted to pick me up.”

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.

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.

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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”.