A few centuries ago autistic people were more likely to be known as geniuses – there’s a drive for conformity in the indoctrination process known as schooling these days, where being “different” is something to be wary of. Can you really blame smart kids from shying away from what passes for “normal” these days?
And let’s not forget the huge profits made by the pharmaceutical corporations each time such a diagnosis is made – autism, ADHD and other “illnesses” rake in billions of dollars…
I have followed William in my therapy practice for close to a decade. His story is a prime example of the type of brainy, mentally gifted, single-minded, willful boys who often are falsely diagnosed with autism spectrum disorder when they are assessed as young children. This unfortunate occurrence is partly due to defining autism as a “spectrum disorder,” incorporating mild and severe cases of problematic social communication and interaction, as well as restricted interests and behavior. In its milder form, especially among preschool- and kindergarten-age boys, it is tough to distinguish between early signs of autism spectrum disorder and indications that we have on our hands a young boy who is a budding intellectual, is more interested in studying objects than hanging out with friends, overvalues logic, is socially awkward unless interacting with others who share identical interests or is in a leadership role, learns best when obsessed with a topic, and is overly businesslike and serious in how he socializes. The picture gets even more complicated during the toddler years, when normal, crude assertions of willfulness, tantrums, and lapses in verbal mastery when highly emotional are in full swing. As we shall see, boys like William, who embody a combination of emerging masculine braininess and a difficult toddlerhood, can be fair game for a mild diagnosis of autism spectrum disorder, when it does not apply.
Jacqueline, William’s mother, realized that he was a quirky baby within weeks of his birth. When she held him in her arms, he seemed more fascinated by objects in his field of vision than by faces. The whir and motion of a fan, the tick-tock of a clock, or the drip-drip of a coffeemaker grabbed William’s attention even more than smiling faces, melodic voices, or welcoming eyes. His odd body movements concerned Jacqueline. William often contorted his body and arched his back upwards. He appeared utterly beguiled by the sensory world around him. He labored to prop himself up, as if desperately needing to witness it firsthand.
Some normal developmental milestones did not apply to William. He bypassed a true crawling stage and walked upright by ten and a half months. He babbled as an infant and spoke his first words at twelve months; however, by age two, he was routinely using full sentences and speaking like a little adult.
When William encountered an interesting object or event as a toddler, he became so captivated by it that he completely ignored the people around him. During a music class, he once stood off to the side, staring at a ceiling fan while all of the other kids sat together singing. Then suddenly, William ran toward the teacher. He was mesmerized by the synchronous movement of the teacher’s lips and fingering of guitar strings that together produced melodic sounds, to the point of losing all awareness that his face was just inches away from his teacher’s. At his two-year birthday party, while the other kids were playing in the backyard, William methodically took some folding chairs, lined them up, and pushed them over one at a time—intrigued by the noises the falling chairs made. He repeated this series of events over and over throughout the afternoon, as if conducting a series of well-crafted experiments.
By age three, William began developing a passionate interest in a range of adult-like topics. After being read a book on Pompeii, he talked endlessly for months afterwards about what he had learned. He pressured Jacqueline to check books out of the library on Pompeii in order to satisfy his need for more detailed knowledge on what Roman life was like before Mount Vesuvius erupted and buried the ancient city in ashes. He strove to know more about aqueducts and amphitheaters. He insisted that Jacqueline design a toga for him, which she did. He strutted around the living room not just pretending to be, but believing that he was, a citizen of the Roman Empire, circa AD 79.
Steve, the lovable host of the children’s TV program “Blue’s Clues,” became an idol for William. He avidly watched reruns of the show and lobbied his parents hard for a green shirt, khaki pants, and brown shoes so that he could look just like Steve—no compromises.
Next he became fascinated with the Titanic, amassing a detailed knowledge of the design of the ship. Facts such as the exact length of the Titanic (882 feet, 9 inches) mattered to him. He also knew that its top speed was 23 knots. William insisted on having a uniform just like Captain Smith’s, the officer who was in command of the Titanic. Getting the color and the arrangement of the stripes and buttons correct seemed essential to William when he and his mother designed it. Jacqueline also helped William amass an impressive collection of pictures of ships, ocean liners, and uniformed officers, which he studied on his own for hours on end.
At preschool, William was a veritable pied piper. During his “Titanic phase,” he arrived at school sporting his Captain Smith blazer and cap. He orchestrated Titanic reenactment scenes, assigning roles and telling his classmates where to stand and what to do and say. This would usually go well at first. William’s enthusiasm was intoxicating, and the play scenes he devised were too exciting for the other kids to pass up. However, more often than not, the other kids eventually lost interest and wandered off because of William’s need for them to follow his script.
At home, William’s tantrums were wild and uncontrollable even as he approached age five. When he was asked by his parents to turn the TV off and join the family for dinner, he might scream and yell in protest, writhe around on the floor, and even throw and break things. Invariably, the situation that caused William to fly into a rage involved setting aside what he was doing in the moment to comply with a routine request—such as to get ready for bed or dressed for preschool. He simply hated transitions. Unless his parents regularly planned activities that were in line with his interests, William inevitably became agitated, overactive, and unmanageable.
Mealtime was another “powder keg” situation. William was repulsed by vegetables. If carrots, broccoli, or any other vegetable was placed on his plate, he thought nothing of throwing the entire dish on the floor. All he could stomach was a short menu of items like pizza, hot dogs, or peanut butter sandwiches.
William’s parents were sociable. They spent a great deal of time in the company of other parents and children. They knew William’s tantrums, fussy eating habits, and social difficulties were outside the norm. Their friends’ kids were maturing, while William seemed stuck. When William was five years old, they decided to have him evaluated. A highly respected doctor at a university-based institute was sought out to conduct the initial evaluation. During a twenty-minute observation, William mostly sat staring at the doctor’s bookshelves—either ignoring or providing one-word answers to the questions he was asked. At the end of this brief observation, the doctor concluded that William was “on the spectrum” and had Asperger’s syndrome. The doctor reassured Jacqueline that her son’s difficulties were due to him having a brain disorder and that she should in no way hold herself responsible. He advised her to have further testing conducted through the institute to confirm the diagnosis and to approach her local regional center to obtain services for him—“Mostly as a precaution in case he can’t take care of himself when he gets older.”
Years later, when recounting this experience for me, Jacqueline said this news was like a “blow to the solar plexus.” But she convinced herself that failing to trust the conclusions of a highly respected doctor from a prestigious university hospital was nothing short of staying in denial about William. She followed through with a recommendation to have William more thoroughly assessed by autism experts at this same hospital. Their assessment revealed that William had an IQ of 144—placing him squarely in the mentally gifted range. A formal speech and language assessment indicated that William was well over a year ahead in all areas. However, in the final report, it was noted that while William was alone with the examiner, he was unable to initiate or sustain conversations. He either stared off into the distance or interrupted the examiner to talk about off-topic subjects that were of interest to him—such as tornadoes, hurricanes, and earthquakes. When asked about friends, William made vague references to two girls who had moved away and was unable to recall any recent activities he had engaged in with them. Due mostly to his behavior in the room, the examiner assigned him a diagnosis of autism disorder because of his “communication and qualitative impairments in reciprocal social interaction.” Jacqueline was confused by the report. She wondered if the examiner had taken any time to actively engage William. She knew that William could be quite animated and talkative when adults took a liking to him.
Nevertheless, William’s parents went along with the diagnosis and so began their bewildering odyssey into the mental health field. At the behest of the specialist who assessed William, they secured a lawyer to sue the local regional center to obtain autism services. The regional center had unilaterally denied such services, claiming William needed to have been formally diagnosed as autistic prior to age three. It took $22,000 in legal fees to bring their case before a judge, who ordered William to be formally assessed by a medical doctor at the regional center. That doctor determined that William had full-blown autism and did indeed qualify for services. However, as the years unfolded, William’s parents had lingering doubts. They approached me when he was age eight.
I agreed to meet with William and to offer my clinical judgment. Within minutes of playing with William, I knew, unequivocally, that he was not “on the spectrum.” He was enthralled by the range of dart guns I had in my office and asked if we could play a World War II game. I heartily complied. William took turns being Hitler, then Stalin, mentioning how he was in command of millions of troops who followed his orders. When I playfully acted as one of his minions awaiting orders to shoot the enemy, William became delighted. He threw himself into the role of dictatorial commander and ordered me to shoot an imaginary enemy soldier. I did so, making loud machine-gun noises. William was emotionally beside himself. He quickly asked if he could be Stalin and I could be Hitler, and if I would shoot him. We reenacted this Hitler-shooting-Stalin scene over and over, with William pretending to be in the throes of death, each time using louder gurgling sounds and ever-so-dramatic, jerky body movements.
For me, William’s imaginativeness, as well as the emotional give-and-take in our pretend play interactions, was proof positive that it was folly to consider him autistic in any way.
Fast-forward to the present. William is now a high school student who is very active in student government. He is quite at ease with other teenagers who share his level of intellect. He continues to demonstrate the same thirst for knowledge that he had as a toddler. When classroom subjects interest him, his academic performance is stellar. When they don’t, William’s grades suffer. His report cards often contain peaks and valleys of As and Fs, which is immensely frustrating for his parents. His interests are not highly obscure and detail oriented, characteristic of autism, such as memorizing the names of dinosaurs or the serial numbers on Ford trucks. He is an abstract thinker who labors to understand issues more deeply. For instance, he has a complex understanding of different forms of government, and he is able to articulate the arguments for and against democratic, fascist, and oligarchical arrangements. This conceptual, philosophical way of acquiring knowledge tends not to be autism-friendly.
Granted, William is far more comfortable isolating himself and studying political geography and rock-and-roll memorabilia than he is hanging out at the mall. In addition, he can still explode emotionally when he is forced to switch activities, such as applying himself to his homework rather than researching Fender guitars or the geography of Iceland on the Internet. Moreover, he’ll only incorporate new food items into his diet when he has tried them at a fancy restaurant that doesn’t have kiddie foods such as pizza, hot dogs, or peanut butter sandwiches on the menu. However, these traits and behaviors don’t mean that he’s autism spectrum disordered. They reveal William to be a brainy, somewhat introverted, individualistically minded boy whose overexcitement for ideas and need for control cause problems with parents and peers.
As we shall see, boys with these traits and behaviors are often falsely diagnosed with autism spectrum disorder, especially when they are assessed at younger ages.
The early-diagnosis trap
True autism is a potentially very disabling neurological condition. Roy Richard Grinker, in his acclaimed book “Unstrange Minds,” masterfully documents the challenges he faced raising Isabel, his autistic daughter. At age two, she only made passing eye contact, rarely initiated interactions, and had trouble responding to her name in a consistent fashion. Her play often took the form of rote activities such as drawing the same picture repeatedly or rewinding a DVD to watch the same film clip over and over. Unless awakened each morning with the same utterance, “Get up! Get up!” Isabel became quite agitated. She tended to be very literal and concrete in her language comprehension. Expressions like “I’m so tired I could die” left her apprehensive about actual death. By age five, Isabel remained almost completely nonverbal.
When the signs of autism spectrum disorder are clear, as in Isabel’s case, early detection and intervention are essential to bolster verbal communication and social skills. The brain is simply more malleable when children are young. Isabel’s story in “Unstrange Minds” is a heroic testament to the strides a child can make when afforded the right interventions at the right time.
However, the earlier an evaluation is conducted, the greater the risk of a false diagnosis. Many toddlers can be autistic-like in their behavior when they are stressed. Sometimes the procedures used by experts to evaluate toddlers generate the sort of stress that leads a struggling, but otherwise normally developing, toddler to behavior that is autistic-like.
Nobody has made this point more clearly than the late Dr. Stanley Greenspan, the internationally recognized child psychiatrist who developed the popular Floortime approach to treating autism spectrum disordered kids. In his web-based radio show several years before his death in April 2010, he cited an alarming statistic. Of the two hundred autism assessment programs his team surveyed across the country, many of which were located in prestigious medical centers, only 10 percent emphasized the need to observe a child along with a parent or guardian for more than ten minutes as they spontaneously interacted together. He tended to observe children playing with a parent for forty-five minutes or more, waiting for choice points to engage a child to determine if he or she was capable of more sustained eye contact, elaborate verbalizations, or shared emotional reactions. Dr. Greenspan believed that these conditions of safety and sensitive interaction were essential in order to obtain an accurate reading of a child’s true verbal and social skills.
For a sizable percentage of toddlers who don’t transition well to new surroundings, freeze up with strangers, or temporarily dread being apart from a parent, the formal nature of a structured autism assessment can lead to their becoming mute, hiding under a table, avoiding eye contact, hand flapping, or exhibiting any number of other self-soothing behaviors that get misinterpreted as autistic-like. Trained professionals are supposed to conduct autism assessments in a standardized way. This is clinical jargon for being fairly neutral in one’s approach to the child. This might involve an examiner assuming a seating position that requires a child to turn his or her head ninety degrees to directly look at the examiner when his or her name is called. If the child fails to look up and make direct eye contact with the examiner after his or her name is called aloud several times, the child is considered to be exhibiting autism red-zone behavior. Yet many distressed or slow-to-warm toddlers will only respond to their name if an unfamiliar adult strives to be warm, engaging, and nonthreatening—not just neutral.
It is these autistic-like situational reactions of struggling toddlers during formal testing conditions that make a false diagnosis a real possibility. A 2007 University of North Carolina at Chapel Hill study found that over 30 percent of children diagnosed as autistic at age two no longer fit the diagnosis at age four. Several years ago, data supplied by parents of over seventy-eight thousand three- to seventeen-year-olds, as part of a National Survey of Children’s Health, discovered that nearly 40 percent had a previous, but not a current, diagnosis of autism spectrum disorder.