The Map and the Territory

Posted on October 23, 2017 by iraheilveil

The other day, a colleague of mine called me to consult on a case. The client was a young adult who had been diagnosed with autism. At one point she said, “His black and white thinking is caused by his autism…” My heart rate instantly quickened and before the apoplexy could do too much brain damage I interrupted her and curtly said, “No. His black and white thinking isn’t caused by his autism, his black and white thinking causes his autism.” She seemed confused, so I did my best to explain the damage that can be done by reifying labels. I probably did a lousy job, because her mystification lingered. I don’t know if I can do it better now, but I have the advantage of being able to cut and paste, so here we go.

I told my colleague that the more you rely on a label (a diagnosis) the less you are likely to know your client. Although it’s helpful, indeed necessary, when starting out in any field to learn the jargon, and thus have a convenient shorthand for describing a phenomenon and reducing the morass of information into manageable wholes, it can also lead us down wrong paths. It is no accident that the more experienced a clinician the less jargon you will hear.

Humans are simply far more different from each other than we are alike. The self-proclaimed “autistic” psychology professor Stephen Shore is credited with the cute saying that “If you’ve met one person with autism, you’ve met one person with autism.”

Diagnostic labels obfuscate more than they clarify. Reducing someone’s personality to a group of symptoms does serve to focus on what some have concluded are the most meaningful bits and pieces, but by doing so we too easily fail to see the richness and contradictions of those behaviors that lie outside what we expect to see, and that makes us prone to errors. If the label we give to the jar with the white powder in it is “flour” then that is what we expect will be in the jar, not the sugar that you put in the wrong jar when you were preoccupied with getting the internet upgraded. It is not necessarily that it becomes a self-fulfilling prophecy (although it could, if a therapist subtly steers his or her client toward the expected set of symptoms through explanations or interpretations that elicit those symptoms), but rather that the therapist actually “misses” the deeper truths of who is sitting opposite.

Diagnoses are, essentially, metaphors, in the same way Susan Sontag brilliantly described cancer as a metaphor in her seminal essay “Illness as Metaphor.” Metaphors can be compelling ways to describe things, but they are not the same as the things we are describing. You can’t meaningfully say that John is schizophrenic any more than you can put a blanket of air on your bed, shoot an idea, buy a moral compass from the nautical supply shop, or really give me a piece of your mind. That is not to say that—like John the Baptist, I cannot be a good shepherd even though I have no sheep. What I do mean to say is that I may indeed be a good shepherd, but I am much more than that, and by the way, I have goats (well, I used to). As the semanticist Alfred Korzybski famously said, “The map is not the territory.”

Another Hungarian hero of mine– Thomas Szasz, made a career out of professing that psychiatric diagnoses were essentially a form of social manipulation. A psychiatrist himself, Szasz insisted that he was not anti-psychiatry, but anti-coercive psychiatry. He saw psychiatric diagnoses as socially constructed with little to no medical evidence to support them, to be used, perhaps, to remove someone’s freedom (as in the case of hospitalizing a schizophrenic), cast someone aside from society (such as calling homosexuality a disease, which although eventually abandoned was done for decades), or sell drugs that don’t work or cause more harm than good.

Too many wrong roads are driven when we begin to think that the metaphor is the real thing. The depth of personhood, the miraculous complexity and uniqueness of each individual, is transmogrified into the label we put on the package. Korsybski once dramatically demonstrated this when he took a break from a lecture to eat some biscuits that had been wrapped in white paper. After commenting how much he enjoyed them, he offered some to students in the front row, who enjoyed their taste until Korsybski removed the white paper to reveal that they were dog biscuits. The students became nauseated, and Korsybski said something to the effect that we not only eat food, but we also eat words.

The problem with my colleague stating that her client’s “black and white thinking was caused by his autism” is that “autism,” as are most psychiatric diagnoses, is merely the label on the dog biscuit package. It may or may not have anything to do with what is inside the package, but instead may have everything to do with what we think is in the package. The truth is that, to this day, as is so with many things, we scientists know a lot about what the collection of symptoms we call autism looks like, but we don’t know much at all about how it comes about, or what goes on physiologically to cause those symptoms.

When we reify something, we also give it a static quality. We take something that should be a verb and turn it into a noun that just sits around on a shelf waiting for someone to pull it off. And in doing so, we begin to think that there is little we can do with it. If we only referred to John as a noun, as proper as that would be, we would imagine him standing somewhere. But if we said he was “Johnning,” we would imagine all that he does that makes him tick. Saying someone has autism, or depression, or even a virus, leaves us little to do with it, freeze-drying it as it were, and even creates a bit more distance between us and them. If autism, or any diagnosis, was a verb rather than a noun we would be more interested in what it does and how it works, thereby bringing it to life and moving us to engage with it.

Another problem with my well-intended colleague’s comment is the direction of causality. We need to know the territory before we can draw a map, but drawing the map will not create the territory. We could say with some certainty that the more it rains the more umbrellas will be sold, but no matter how many umbrellas we buy we can’t make it rain. Does giving someone the label of autism make that person lose the ability to perceive life’s grays, or does the inability to perceive gray cause us to give someone the label of autism? And if, as I would insist, it is the latter, then what useful information does that give us? And if we make the mistake of reversing causality, thinking that this thing we call autism causes black and white thinking, it could freeze us in our tracks. We would have succeeded only in thinking we know something that we don’t, becoming autistic-like in our thinking and missing the grays, the subtleties that might lead us down different and potentially fruitful paths.

My colleague fell into a dangerous trap, but although the landscape of our language and everyday thinking is littered with those traps, no experienced clinician or practitioner of life should fall into them. Confusing the map with the territory is something that ultimately can hurt our clients when the label is a psychiatric diagnosis, and when the labels we serve up are liberals, conservatives, Palestinians, Moslems, Jews, Christians, or maybe even Hungarians, we may succeed only in creating obstacles to understanding each other.

The Big Sky Theory

Posted on July 24, 2017 by iraheilveil

On any given day, there are about 87,000 flights undertaken, and at any single moment, there are between 5 and 10 thousand airplanes (commercial and private) in the skies over the United States alone. According to the FAA, on an average day, controllers handle 28,537 commercial flights, 27,178 private flights, 24,548 “for hire” flights, 5,260 military flights, and 2,148 cargo flights. And these numbers don’t include private pilots who choose not to talk to ATC, as I often do when out cruising the neighborhood or when flying around non-towered airports.

There’s so many airplanes up there at once it’s a wonder they don’t bump into each other more often. They don’t, it seems, because relative to the sheer volume of atmosphere in which they fly, all those airplanes actually don’t take up a lot of space. The relative volume of airplane to the volume of sky in which they fly being the reason that they don’t bump into each other more often is called the “big sky theory.” And statistically, given the ratio, the chances of one airplane bumping into another should be close to zero.

But although it is happening less and less, it does happen, roughly a dozen times a year, especially in crowded airspace (such as busy airports) where airplanes are more likely to converge. The big sky theory, it appears, doesn’t work that well, because the statistical probability of it ever happening is very close to zero.

Once, at a party in the living room of the Victorian house I was renting as a student with several roommates in Santa Cruz, California the math instructor and brilliant folk music satirist Tom Lehrer entertained us by demonstrating statistically that it was impossible to get wet when walking through the rain. Perhaps it was the blackberry brandy that mysteriously found its way from a bottle in my back pocket to my tummy that prohibited me from understanding the arithmetic, but his statistics appeared impeccable and his argument was compelling.

Now, I may not be able to tell you the formula for chi-square off the top of my head, but I can work my way around ANOVAs, MANOVAs, and one of my favorite statistics (and Russian movie stars)—ANACOVAs, with fluency. Compared to highly trained academic statisticians, I still sit at the kid’s table, but I retain some perhaps egoistic pride in my ability to do discriminant function analyses, and I can work my way around most research articles I read.

The big sky theory doesn’t work for similar reasons that you really can’t wet when walking through the rain. It is very easy to misunderstand (to be generous) or deceive (to be cynical) with statistics. (I am fond of “proving” to kids that I have 11 fingers by counting down from 10 on one hand and then adding five when I get to the other.)

That is why Joel Best’s book “Damned Lies and Statistics” and its subsequent editions should be required reading for anyone who reads anything, pretends to know something, and hasn’t studied statistics. It should also be required reading for journalists, with whom I have particular antipathy for perpetrating the most heinous of statistical misstatements.

Theories can be extremely convincing, especially when backed by statistics. As an autism “expert,” I once described in detail the theory behind how the preservative thimerosal, used in the MMR vaccine, can cause autism. I had a room full of family practice residents convinced, possibly because I sprinkled the explanation with statistics. (The proportion of thimerosal in vaccines, the multiples of mercury based on the FDA’s own limits of safety, the correlation between mercury poisoning and autism symptoms, etc.) The theory can be made to look rather compelling, but it’s just wrong. These residents were smart cookies, but I could have just as easily convinced them that I had 11 fingers.

One of the many problems with statistics is that it is a very poor method for predicting low-frequency events, such as rain in California, earthquakes, violent behavior, or midair collisions. It is nearly impossible to account for all the variables required for a low-frequency (or extremely complex) event to occur.

The driveway to my domicile is located a half-mile up from a highway. Although I typically drive that half-mile slowly, the other day I had to swerve to avoid a squirrel that decided to dart in front of my car. Sadly for both me and the squirrel (but mostly the squirrel), we collided. If I had to create a statistical model that would attempt to predict the likelihood of me colliding with a squirrel down that half-mile stretch of road, I can assure you that it would reveal that colliding with a squirrel could not happen in thousands of lifetimes. Statistics, it seems, cannot take into consideration the notion that squirrels appear to have a robust death wish, or have a secret ritual in which the transition to adult squirrelhood is marked by darting across a road in front of Lexus crossovers with balding drivers.

So, you see, it isn’t that difficult to prove, statistically, that it is nearly impossible to get wet when walking in the rain. And really, it should never be necessary to look out your window when piloting an aircraft because the chances of bumping into another airplane are infinitesimal. If you believe the statistics, that is.

A Note from Saigon

Posted on June 17, 2015 by iraheilveil

I am writing this today from a tea house in Ho Chi Minh City’s District 1, still referred to by many as Saigon. My business here is psychology and autism related, and the closest thing I am getting to aviation is the flight on the two miraculous jets that got me here– Airbus’ spectacular double decker A380, and Boeing’s stalwart triple-seven.

Vietnam is a beautiful country. It would be even more beautiful to see it from a small airplane at a few thousand feet above ground, but that is not possible today because there is no such thing as general aviation here. The skies are reserved for the military and commercial jetliners on flight plans.

To say that the fact that there is no general aviation in Vietnam is the result of communism is an oversimplification. One can say with confidence that when it rains in Vietnam the streets get wet, but it seems as though there is little else one can say with confidence about Vietnam.

Yet, there does seem to be a relationship between the fact that the two “mostly communist” governments in Southeast Asia, Vietnam and Laos, are the countries that have the least going for them in the arena of general aviation. Cambodia, which has been beautifully described recently as “vaguely communist” now has a flourishing albeit young general aviation community. Other countries in the region whose political-economic systems are ostensibly democratic-capitalistic such as the Philippines and Malaysia, have flourishing aviation scenes.

In a previous post I mentioned that growing up in the U.S. I somehow knew that when you wanted to chase another child off a swing you would shout “It’s a free country!” How interesting it is to be socialized (indoctrinated?) into believing in freedom. A private pilot’s license grants another opportunity to define and even treasure this thing we call freedom. Here in Vietnam, a country where flying your own airplane is illegal, and one in which the U.S. lost 60,000 of its children and the Vietnamese sacrificed millions of their own, it is difficult for me to not think about it.

It is fascinating to me what a difference a generation can make. My closest associates here are probably either one or two decades younger than me, and they have little consciousness of the Vietnam war. Vietnamese themselves learn about the war in school, but it seems that very few carry the deeply felt conflict inside them that I do. (Today, a receptionist here told me that she “sees it in my grandparents’ eyes.”)

I filed for conscientious objector status during the Vietnam war, although the draft ended before my paperwork could be processed. Clearly, I opposed the war at the time, but my filing for CO status was duplicitous if not downright disingenuous. I was against the Vietnam war, and I was against war in general, but I also believed that there was such a thing as a just war (such as the Second World War).

The more I learn about the Vietnam war, the more I believe that both sides were right, and both were wrong. Isn’t that true of damn near everything? The North Vietnamese had a legitimate gripe– their country had been arbitrarily torn in half and the south was dominated by corrupt, imperialist nations that had subjugated and tortured their people for generations. The South Vietnamese treasured their freedom and democratic ideals and were fighting the spread of communism. These were noble goals on both sides.

The dominoes did not fall when we lost the war. The Viet Cong did not commit genocide or even torture their own citizens when they won, although they imprisoned many and “re-educated” many others. In fact, it was the post-war unified Vietnamese that fought off a Chinese invasion and routed the genocidal Khmer Rouge from Cambodia. Today’s Vietnam is one in which the communist party is considered “irrelevant” or a nuisance by most Vietnamese. There is no free press here, but there is widespread Internet access. It is a system rife with corruption, as is the case with governments throughout most of the world.

One of the reasons I love to fly is because I feel a deep sense of freedom when I do it. I don’t know how to explain that phenomenon. It just is. And, perhaps coincidentally, flying one’s own airplane is also a symbol of freedom. As Vietnam continues its gradual path toward openness, I suspect that general aviation will emerge. Laos, closely aligned with Vietnam, has its very first flying club, and perhaps that will serve as a model for Vietnam.

Although I see faults in the American system, as deep as those faults can be, it remains one of the few places in the world where I could get in my airplane, start the engine up, and legally fly from one end of the continent to another without letting anyone know about it. I can even do it legally without turning on my radio. Sure, Langley will have me on its radar and will be watching every move I make, but as long as I don’t stray too close to Disneyland or Washington DC, they are going to leave me alone. That is freedom, and that is noble.

Autism in Love

Posted on April 23, 2015 by iraheilveil

I am on a Boeing 757, sitting in the economy section, one of the few times I am grateful for having short legs. I am returning home from New York where a film I conceived and executive produced just premiered at the Tribeca Film Festival. It is truly an honor, given the numbers: 6700 films were submitted and only 120 were selected for the competition. The film, “Autism in Love,” is in the “world documentary feature” category, competing against 11 others in its category for a coveted award.

One of the films in competition with “Autism in Love” is called “In Transit,” a beautiful and moving documentary interweaving stories told by real passengers (i.e., not actors) on the Empire Builder, an AMTRAK train whose route goes from Seattle to Chicago. The stories themselves are captivating, but I was equally captivated by the fact that the stories were told as the American landscape unwound behind it, creating a kind of metaphor within a metaphor. Each person seems to be in some sort of transition in their lives, moving internally as they physically move through the landscape. But on a train, the sensation is that it is the landscape that is moving, so that one’s internal movement is mirrored by the movement of the landscape. And of course, all that occurs on a screen projecting a “moving picture,” a medium that is, by definition, about movement.

I am doing the same thing now, traveling at 514 miles per hour, four-fifths the speed of sound, 40,000 feet above the ground. We humans, through the ingenuity provided by our cerebral cortexes, create and build machines that allow us to use nature in order to defy it. We build machines that move us from one place to another for many reasons, but ultimately we build machines that move us physically in order to move us emotionally.

The film I produced, expertly directed by Matt Fuller, follows the lives of several people diagnosed with autism as they navigate the waters of romance and love. Their lives are very different from one another’s, but they each live in the landscape others have called autism. I have lost any objectivity I might have had about the film, but judging by the reviews I have been reading, it succeeds in a message I was hoping for; that love is love and nearly anyone, despite having a label that others insist prevent them from loving, can teach us about it.

In college days I was taught that humans, by nature and physiology, are novelty seeking animals. That is undoubtedly what makes solitary confinement so punishing. But without the contrast of stability there could be no novelty, just as a figure disappears when the ground around it disappears.

So whether we find ourselves riding the rails of AMTRAK, sitting on a bus, or flying on a Boeing 757, we ultimately remain figures embedded in the world around us. We are moving, or being moved.

For more information on “Autism in Love,” see www.autisminlove.com, or better yet, see “Autism in Love” on Facebook.

Leaving Home

Posted on April 22, 2014 by iraheilveil

You know life is going pretty good when you wake up in the morning thinking about baseball and soccer. The question I must have been tossing about in my sleep was one of the great questions of philosophy: why is baseball so popular in the United States and soccer so unpopular, when the reverse is true in the rest of the world?

The conclusion that woke me up (not an easy thing to do) was this: baseball is quintessentially American because the struggle that it represents is archetypal and etched deeply into the American psyche. Baseball is about leaving home when the odds are stacked against you, struggling to get through obstacles until hopefully, you finally return home victorious. Soccer, on the other hand, is about kicking a ball around endlessly with little hope of accomplishing anything, rarely using your head, and having your hands essentially tied behind your back.

Americans are uniquely obsessed with leaving home. I certainly was, as was almost everyone I knew. In fact, if I weren’t, my parents would have no shame in kicking me out so that I could learn to make it on my own. That push to rugged independence is what built the American landscape, and what still characterizes much of it.

Parents of children with autism in the United States have a unique challenge. Although it could be argued that all children, by definition, are unprepared to leave home, children with autism clearly, also by definition, do not have the requisite skills to make it on their own. So what is a parent to do?

Many American parents buy into the cultural myth that leaving home is always a good thing to do—that independence is the thing to be celebrated. (We don’t have a “Dependence Day,” do we?) It is made all the more attractive by the harsh reality that life for parents of children with disabilities is just harder than it is for others; in fact, they face Herculean obstacles. And then there is the fear that I hear parents tell me so often, that should something happen to them, how would their children survive?

The pressure parents feel is magnified by the extent to which they buy in to the myth that independence is always good. In many other cultures children with autism are thought to be a curse, bring shame to the family and are hidden away. Yet in these same cultures “typical” children are not expected to “leave home,” but instead are incorporated into the body of the family. This brings great relief for the biological parents, as children are raised by a combination of grandparents, aunts, uncles, cousins and siblings.

While we inevitably struggle to teach our children the skills they need to reduce the likelihood of their becoming victims, perhaps it behooves all of us to consider the benefits of a different cultural view, but without the shackles of shame. When there is a child transitioning to an adult with autism the larger community should be brought in where the extended family once was. Parents of children with autism, as do all parents, need a break. They need time and ways to find lives of their own, and to reclaim their identities. In a parallel way, they also need a way to “return home” to a comforting place.

We can’t always hit home runs each time we are at bat, and we can’t always make our homes the safe harbors we would like them to be. But perhaps the more players we have on our team, the better able each of us will be to play the game.

Air Hollywood: Flying the Friendly Skies

Posted on March 17, 2014 by iraheilveil

The tagline for this blog begins with the words “aviation” and “autism,” and to say the least it is difficult to find ways of integrating the two topics. A company called “Air Hollywood” has now made it easy.

Air Hollywood is not an airline per se; it is, as their name might suggest, kind of a fictitious, Hollywood airline. Their business focuses on providing sets for the entertainment industry, including interiors of any kind of airplane you can imagine, cockpits, terminals, gates, etc., as well as stock footage and almost anything imaginable that is needed for movies and is aviation-related. You have seen their work in films such as “Flight,” “Wolf of Wall Street,” and “Kill Bill” as well as hundreds of others.

Recently, Air Hollywood took on a new project. They have decided to offer classes on preparing children and adults for the entire commercial-aviation related gamut of challenges that face them. Over-stimulation at check-in areas, fluorescent lights, airport waiting areas and queues, boarding airplanes, and sitting in a confined airplane, all can pose challenges to those with autism. They call their program “Open Sky for Autism,” and it is being offered for free. It promises to help acclimate those with autism by using supervised repetition during simulations of airport arrival, ticketing, check-in, baggage check, TSA screening, boarding, in-flight simulation, and deboarding. They even do one better than the “real” airlines, and offer complimentary lunch and refreshments! Their opening event is scheduled for April 5^th. Here’s the link: http://airhollywood.com/opensky/

If you have been following either this or my last blog for a while, you know that I am more than intrigued by people who do good things when they don’t have to. I don’t know the folks at Air Hollywood, but I do know that for whatever their reasons they have decided to do something good for a chunk of humanity that needs it, something that is frankly difficult to do and outside what a typical therapeutic agency or clinic has the means to do.

Every religious tradition with which I am familiar preaches charity. Growing up, I learned that the yields on the corners of each of your agricultural fields should be left for the hungry and poor. I applaud any company that uses its resources to do good.

When Less is More

Posted on March 10, 2014 by iraheilveil

Two years ago, I began writing a post titled “When Less is More,” but never finished it. I suppose I couldn’t figure out a way to get my point across in a short enough space for a blog post, failing miserably at making less more.

But last week I came across a post written by Greg McKeown of Stanford Business School. Turns out he recently published a book called “Essentialism: The Disciplined Pursuit of Less,” which I will undoubtedly add to the queue of 35 books by the side of my bed. In the meantime, in the spirit of “less is more,” here is a link to a short video summarizing his ideas:

http://youtu.be/T9x6D09AKBU

The point I was trying to make in my unpublished blog post two years back was that doing a little to help others often makes the biggest difference. I told the story about a family therapist who recounted that in the early years of family therapy big changes in family structure were often wished for and expected, but it rarely turned out that way. The irony was this: family members who experienced very small changes in their family’s functioning often perceived those changes as having huge consequences. Less is more.

Behavior analysts working with children with autism or with any complex, daunting set of problems, systematically break complex challenges into their smallest teachable components. Good flight instructors do the same. Perhaps one element of being a good instructor in any field is learning how not to let knowledge of complex phenomena get in the way of teaching the most fundamental, simplest elements.

Whether it is the journey of a thousand miles that begins with the single step, or losing 40 pounds a few ounces a day, or building a small house in which to fulfill big dreams, as Mies van der Rohe proclaimed many years ago, less is more.

Driven to Distraction

Posted on December 30, 2013 by iraheilveil

Distractibility has always been a sore spot for me. It is one of the three cardinal symptoms of attention deficit disorder (along with inattention and impulsivity), which I have been convinced is an apt description for one set of my struggles ever since I first learned about it in grad school.

Over the years I have developed a series of “procedures” designed to manage my distractibility, little games such as “touch next,” in which I touch a random object and pursue its completion, then touch another random object and do the same. Or a game I call “subvocal lists,” in which I silently repeat a small list of tasks until each one is finished. These little things and others are designed to facilitate forward movement rather than linger too long in the stultifying effects of distraction.

Distraction can be deadly, as recent experience with cell phones have demonstrated. The horrendous train crashes in Spain and Burbank were likely cell phone related, and in an issue of Flying magazine Jay Hopkins mentioned that the Colgan Air crash near Buffalo, the crash of American Flight 965 in Cali, Columbia and many other incidents and accidents were very likely also distraction-related. The Cali crash and other incidents led to the development of the “sterile cockpit” rule, which unfortunately isn’t always used. But for those of you who may not be familiar with this rule, it is designed to limit all conversations in the cockpit to only that which is essential during the takeoff and landing phases of flight. That typically translates to the first (and last) 10,000 feet above the ground. So for those of you on commercial flights, when they tell you to keep all your electronic equipment off during the takeoff and landing phases, they are doing that not because they are worried about the equipment interfering with their sensitive flight instruments, but because they want the passengers attentive in the event of an emergency during takeoff and landing. And they too, in the “front office,” are keeping things as sterile as they can.

The trio of symptoms that comprise ADD are interesting bedfellows. (The fourth symptom—hyperactivity, goes in and out of fashion as a cardinal symptom.) While the syndrome is named “attention deficit,” when you think about it, distractibility is not an attention deficit at all. In fact, it is an attention excess. Why the folks who dreamed up the name for this constellation called it what they did is a mystery to me; clearly it should have been named “attention regulation disorder,” because that is what it actually is. In fact, it is likely that the inattention found in ADD is actually a result of the underfunctioning of those parts of the brain responsible for filtering information (the reticular activating system: RAS). With a poorly functioning filter, the normal bombardment of sensations is experienced as distractibility. Impulsivity is the result of the inability to select just which information warrants acting upon and which is best filtered out.

By the way, the reason that stimulants, such as Ritalin and caffeine, appear to work so well for those with ADD is because stimulants enhance (stimulate) the RAS’ ability to filter information, resulting in an increased ability to focus on what is relevant.

I think I hear the phone ringing. I’ll be right back.

My First IEP

Posted on December 23, 2013 by iraheilveil

"The Others" by JakezDaniel Photo: “The Others” by JakezDaniel

I attended my first IEP in 1980.

For the unitiated, the initials stand for individualized educational plan, and it is the very first step parents go through when attempting to receive services for their child with special needs. Although the event occurred over 30 ago, on the off chance that anyone who was there is still alive I will not mention the name of the school district.

I am telling this story now, although I have told it privately many times since then, because it was a pivotal experience in what was to become almost a lifetime spent devoted to helping children. I was a naive, freshly minted psychologist, just out of graduate school. I was working at a day treatment center in Northridge, California, and one of my clients was due for his annual IEP, the real purpose of which was to determine his continued placement and funding for the upcoming year. My job at the IEP was to present the results of my assessment, which included considerable psychological testing, and make my recommendations to the team.

There were about 8 people at the meeting, including the district’s special ed director, a school psychologist representing the school district, a special ed teacher, the parents, myself, and a few others. After a few other speakers, it was my turn to make my report. I did so, fairly calmly, even though it was my first time. (Although public speaking is the most common phobia, I don’t have a problem with it. It’s private speaking that terrifies me.)

After my presentation, the school district psychologist was called upon to comment. He proceeded to rip into my report, pointing out all the things I did wrong, telling everyone that my data made no sense, that because all my methods were suspicious it could not be trusted to reflect anything having to do with the child, and that it should be completely disregarded.

For some reason I wasn’t offended, but mostly puzzled by his comments. I had received a ridiculous amount of training in testing, and thought I was pretty good at it.

The meeting was long, and the director called for a break. We all went out to the hallway, and the psychologist who tore my report apart asked if I would take a walk with him. We walked a ways down the hall until there was no one in earshot, and he said to me, “There are two things I would like to say to you.”

“Okay.”

“The first thing is that we are not having this conversation. It is important that you understand that.” It was not the first time I had heard that sentence, and usually it preceded something intriguing, so I agreed. “The second thing I want to tell you is that that was a damn good report you presented, one of the best I ever read.” That was puzzling to me, so I just nodded, wanting to hear more. He went on to tell me that I did an excellent job, and really wanted me to know that. He added, with kindness in his eyes, “You have to understand, I have a wife and three children. I need this job.”

He didn’t have to say anything else. I knew what he meant, that the political reality of working for the school district required that he lie to keep his job. He had to make the child look as though he didn’t need the intensive services we were giving him, so that the child would come back to the district and ultimately cost them less money.

The school psychologist was trapped, or at least he perceived his reality that way, and I sympathized with him. I understood that that was the world he was working in, and I felt sorry for him. I would not want to work in a job that required me to lie or to compromise my values, and I don’t think he liked it either.

In the years that followed, I attended scores of IEPs, and hated nearly every one of them. I concocted elaborate strategies to avoid them, because with rare exceptions they were kangaroo courts. I preferred instead to encourage parents to hire professional advocates, and tried to work behind the scenes to negotiate the best solutions, solutions that always put the child first, and also recognized the difficult positions school administrators were placed in by their superintendents. Sometimes, those twains never met, but more often the compassionate understanding of the needs of both sides typically went a long way to help children get the services they needed.

The public school special education system in the US is badly broken, and it has been ever since I began working in it. Children are still routinely denied “free, appropriate” education (in the words of the law), while school district administrators still fear the loss of their jobs for telling the truth. The Individuals with Disabilities Education Act and its precursors were noble if inadequate attempts at fixing it, but recent legislative changes denuded it further, now making it more difficult than it has been in decades for children to get the education that they deserve. Yet, persistent, diligent, compassionate effort can and often does work, as it does in nearly every sphere of life.

Clear For Takeoff

The Psychology of Flying

Category Archives: Autism