October 12th, 2013
October 11th, 2013
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.
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”.
October 10th, 2013
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.
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.
October 9th, 2013
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.
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.
October 8th, 2013
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.
October 7th, 2013
My son exhibits delayed echolalia, or “scripting” as it is now commonly called. He repeats words and phrases that he’s heard from a variety of sources, sometimes immediately, often after a long period of time. He does this quite frequently, talking to himself as he moves around the house, or during our walks, or while he lay in bed falling asleep.
Everything seems to be fair game, from Dr. Seuss rhymes to radio station jingles to dialogue from his favorite TV shows. Recently he has been on a Curious George jag, so much of his chatter is composed of commands and reprimands given to an unseen monkey.
He may repeat a phrase several times in a row, but he rarely quotes at length from any one source. Usually he strings together snippets from an assortment of media: first a lyric from a song, then a line from an audiobook, then something he’s heard me say. I sometime imagine his head as one of those Powerball machines, with words and phrases written onto the balls, bouncing about and popping out in random order.
There are many hypotheses as to why people with autism script. Some believe it is the communication instinct gone awry, the speaker mimicking conversation by parroting things he’s heard before. Others believe that echolalia is a way to organize thoughts. I don’t pretend to know why my son scripts, though I believe it calms him down. As someone who often sings or whistles songs as he goes about his day, I can relate.
Occasionally he will blurt out something that sounds like communication at first blush. Once he was pacing around the living room chanting “I can change, I can change, I can change!”, as if berating himself for a character flaw. I became genuinely alarmed, thinking that someone at school had chewed him out, and asked him what he was saying. It wasn’t until I prompted him to keep talking, and he continued with the line “if it helps you fall in love”, that I realized he was quoting from an LCD Soundsystem song that I’m pretty sure he had not heard in a year.
Another time, while we were driving to the playground, “Creep” by Radiohead came on the radio, and I sang along at the top of my lungs. Upon our arrival we clambered out of the car and headed to the monkey bars. As we reached the perimeter of the equipment my son suddenly stopped in his tracks and softly exclaimed, “what the hell am I doing here?”
October 6th, 2013
What is your favorite part of parenting your son?
My son and I crack each other up. We are hilarious
When we are not engaged in a specific task, such as getting dressed, or eating your watermelon come on eat it you love watermelon gum why would you not like actual watermelon eat it!, we are often just hanging out together, laughing most of the time. There is an hour window between his evening shower and his bedtime, which is ostensibly “book reading time”, but usually winds up with me stoically intoning “Frog and Toad Are Friends” while feet are rubbed across my beard, or while my son slowly slides behind the cushion of the couch, giggling all the while.
It’s not just his joie de vivre that leaves me in stitches, but his jokes. They are not sophisticated, but he really sells them. Halfway through “Sylvester and the Magic Pebble” he’ll suddenly cry “tickle on your foot!” and I’ll tickle his foot, and then he’ll yell “tickle on your arm!” and I’ll tickle his arm, and then he’ll yell “tickle on your”, and I’ll watch him ponder his options for a moment while a smile creeps across his face, and he’ll end with “swimming pool!”. And I’ll yell “tickle on your swimming pool? That doesn’t even make sense?!” And we’ll both wind up laughing until we’re short on breath.
He’s a great audience as well. If I say something unexpected, or in a funny voice, or even just make up a dumb song on the spot, it’s a guaranteed laugh. No eye rolls, no grimaces, no “oh, dad”, just straight up giggles. It’s very gratifying. We are a comedy club of two.
October 5th, 2013
Given his druthers, my son will listen to pop music. Pop music, and the theme songs to TV shows. He basically uses Netflix Instance as a jukebox, playing the first 30 seconds of a variety of programs just to hear the intros, or jumping around Curious George 2: Follow That Monkey to find the musical sequences.
We usually have the car radio tuned to C89 FM during our drives. But music has a noticeable affect on him: fast songs wind him up, slower tunes calm him down. So when I put him to bed I let him select a playlist from a curated collection, one confined to albums with soporific qualities. This has worked wonders in getting him to sleep. Before he could be up for hours, rolling around in bed, kicking the wall, laughing and whooping; now he listens to music with such an intensity and stillness and he usually drops of to sleep within minutes.
His favorite album is The Kaleidoscope by a local duet called Lemolo, a perfect blend of the eletronica and lilting female voices that he prefers. We carry Kaleidoscope with us on our phones, and even have a CD in the car, ready to deploy in case of meltdown, with the self-titled album by The Lumineers as an emergency back up.
Here is a playlist of songs, taken from my son’s favorite “going to sleep” albums.
October 4th, 2013
Dear Mr. Baldwin,
I followed a link to your blog and read your post about your son and his walkabout. I have a son about two years younger, and your description of your son is something I could easily have written about mine.
I hate the thought of asking for things from people who are providing them for free, but may I ask you for pointers about what my wife and I will face in the future, given the closeness in age between my son and yours?
Several years ago I stopped trying to predict the trajectory of my son’s life. It was profoundly liberating.
When he was first diagnosed at 18 months we were told was that he had ASD, with no indication as to where on the autistic spectrum he fell. For a while I assumed he had Asperger’s Syndrome. There was no real reason to believe this, but I considered Asperger’s to be a “better” diagnosis than classic autism, and confirmation bias took care of the rest. Oh, people with autism are sometimes tall? Well my kid is in the 80th percentile for height, so QED.
Year after year I revised my expectations. An 18-month-old child with classic autism is almost indistinguishable from a neurotypical toddler to the untrained eye, but the differences become more apparent at years three and four and five. Even at six I was trying to “decide” whether he had Asperger’s or Classic Autism, so as to better predict what kind of life he would have as a teen and adult.
At some point I just gave up. What was the point? Prediction can help you with some decisions (e.g., should we start a college fund?), but by and large this whole process was for my benefit, not his. I wanted to know what to expect, because not knowing made me anxious.
But being wrong all the time was making me more anxious. Worse, it was leaving me disappointed. I hoped my son wouldn’t have classic autism, and was disappointed when he did; I hoped he would have a big verbal breakthrough, and was disappointed each year when it didn’t happen. I wasn’t disappointed in him; I was disappointed that my own dumb expectations hadn’t been met.
Now, when people ask me if my son will one day live independently, or have a job, or find a partner, I answer them honestly: “I don’t know”. I no longer pretend that I have any idea what will happen in the next year or decade. And I’m so much happier this way.
Given all that, I’m reluctant to make predictions as to what you will face in the next few years. And anyway, there doesn’t seem to be any uniformity of development in children with autism. Some of my son’s peers, who were as non-verbal as he was two years ago, have since kissed the Blarney Stone and are an open spigot of words; others have gotten really, really, really, really into Pokemon or car keys. Kids with autism are as different from one another as they are from neurotypicals, so far as I can tell.
However, there is one prediction I can make with relative certainty: in the next two years your child is going to get big. And it really does make sense to prepare for this.
Somehow this crept up on us. One day recently he cried “lift you up!” and I obliged, only to discover that I could no longer keep him aloft for more than a minute; another day he gave me a friendly “checking in” squeeze on the arm, and it kind of hurt. Your son is about to transform into a young man, so brace yourself for that. I started strength training, for instance, just so I can lift my son up for one more year.
Beyond that, though, I have no idea what’s going to happen, with your child or mine. No one does. So you teach yourself to love the unknown.
October 3rd, 2013
I am shuffling around the kitchen, making coffee, when my pajama-clad son bounds in.
“Good morning!” I cry. “Do you want some breakfast?”
“Yes,” he says.
“What would you say to a waffle?”
He thinks for a long moment and then replies, “hello”.