Part 12 of Our Award-Winning Series “Our Children’s Health”
Betty Marie is 16. She can really be annoying.
First, you must call her Betty Marie. “It is not Betty,” she says matter-of-factly. “It is Betty Marie.”
She lectures everyone. She doesn’t speak to you, she talks ‘at’ you. She will stare straight into your face, not always into your eyes, as if there is no space between the two of you. But if you infringe on her space, she freaks out. And she holds grudges.
Most of the time she won’t laugh at your jokes; when she does, it seems forced. And eruptive. Her mother, Elizabeth, says that if Betty Marie tells a joke, it is usually totally inappropriate to the situation.
Those who know her say she rarely smiles and seems very sad. She has only one friend, Karen, from childhood, who has stuck by her inexplicably. They share a love of male rock stars. Betty Marie would like to one day marry Justin Timberlake.
Betty Marie knows every detail about every male rock star she obsesses over. Every detail.
Socially, she is an outcast. She dresses straight out of the 1950s, complains Elizabeth, is uncomfortable conforming to social norms, and finds it impossible to make social conversation. A self-described “nerd,” Betty Marie is in the top of her class academically. Her IQ, she is quick to tell you, “is MENSA level.” Elizabeth says her daughter’s academic achievement “assures a fast track to college.” She is a whiz at math, languages and the computer. She taught herself Greek and Latin. She is a superb musician.
She fights with her parents constantly and with her younger brother. But nobody realized until a few months ago that she has a medical condition, and wasn’t just “being difficult,” as Elizabeth describes it.
Recently, Betty Marie’s young cousin was diagnosed with autism, and her aunt recommended that Betty Marie be evaluated. A diagnosis came quickly.
“The doctor took her whole history, tested her, examined her, sent her to other specialists, and the diagnosis was fast and concrete. It’s a shame we didn’t know this when she was younger, because they said we could have changed some of her behaviors through therapy. And had a better life together,” says Elizabeth.
Betty Marie has Asperger’s syndrome.
So, it is believed, did Albert Einstein, Thomas Jefferson and Charles Darwin. The geek down the street probably has it as well.
Even Heather Kuzmich, a contestant in this season’s America’s Next Top Model, has Asperger’s. Like the other young women on the popular television reality show, she is tall and beautiful. Unlike the other contestants, and against the expectation of what a model should be, Heather is stiff, uncomfortable when others touch her and introverted. Although she frustratingly poses in profile as opposed to facing forward, and can’t walk down a runway without hunching over, she captures that emotionless countenance that is gold for models. She’s the fan favorite and the current front-runner. Heather’s admittedly odd, but her not-so-unusual behavior prompted a colleague at the Press to comment, “If she’s got Asperger’s, then a lot of people I know have Asperger’s.” And he could be right.
Sound Familiar?
Asperger’s syndrome is perhaps one of the most misunderstood of all the disorders in the autism spectrum (a range of mainly communication and social interaction developmental problems). One reason is that many Asperger’s children simply appear “odd,” and because of their normal physicality, they might seem typical enough, except for a few obvious behavioral quirks—like avoiding eye contact, or having intense eye contact. Often referred to as the “nerd disorder” or “little professor syndrome,” Asperger’s leaves its children just “weird,” “socially inept,” “quirky” or “eccentric.” Unfortunately, the disorder is so much more than that.
First identified in 1944 by Dr. Hans Asperger, an Austrian pediatrician, Asperger’s is one of five autism-related pervasive developmental disorders (PDDs). Autism, Rett syndrome, childhood disintegrative disorder, and PDD-not otherwise specified (PDD-NOS) are the others.
Asperger’s, which had been undiagnosed or misdiagnosed for decades, became an official diagnosis only recently, when it was finally included in the 1994 edition of the Diagnostic and Statistical Manual of Mental Disorders-IV (DSM-IV). Between 3 and 7 per 1,000 children have the syndrome, according to the widely accepted Gillberg and Gillberg epidemiological data, but most Asperger’s advocates and experts believe it is much, much higher than that data indicates. Dr. Jim Vacca, department chair of special education and literacy at C.W. Post College says, “The incidence of Asperger’s could be more than 1 in 300. I know there’s a high frequency.”
Also, the estimate that four times as many boys as girls have Asperger’s is in dispute, because conventional thought is that girls who have developmental disorders are often underdiagnosed.
Children with Asperger’s display a wide range of symptoms, from mild to severe—but there are specific diagnostic guides that can help. Mostly symptoms include deficiencies in social skills, and interest in and need for routine, sameness and habit, which often leads to difficulty with change, along with preoccupations and obsessions.
Though part of the autism spectrum, Asperger’s has differences from autism. The core distinction between autistic children and Asperger’s kids is found in the young years, when they should begin to speak. The Asperger’s child, according to the DSM-IV, must show “a lack of any clinically significant general delay in language acquisition, cognitive development and adaptive behavior (other than in social interaction). This contrasts with typical developmental accounts of autistic children, who show marked deficits and deviance in these areas prior to the age of 3 years.” Simply put, Asperger’s children speak on time or even early, and autistic children show speech delays or have loss of already established speech.
Temple Grandin, Ph.D., a scientist, professor, best-selling author and world-renowned lecturer who has Asperger’s, spoke to the Press about how to protect children from being misdiagnosed—and about what it is like to live with Asperger’s.
All Asperger’s children, Grandin warns, have the potential to go undiagnosed because of the very nature of the warning signs for the disorder: “There is no obvious speech delay as there is with [classic] autism.” But then, when children are older, the signs come: “By third or fourth grade, [Asperger’s kids have] no friends; [they have] an area of strength [and they display] rudeness.”
Girls in particular, she says, fall through the cracks: “Girls tend to be somewhat more flexible in their thinking. They get overlooked more often because they manage to fit in better than the guys.”
Who Are These Kids?
Asperger’s kids display their unique problems as they get older, such as body language awkwardness. These children are often uncoordinated and clumsy, with lumbering gaits and difficulties reading social cues. When they speak, it is often at and not with the listener. They are often unaware of proper body distance and are usually “in the face” of the person with whom they are speaking. Sometimes they prefer not to converse at all. But when they do, their speech seems rote or expressionless at times, and emotionless, lacking subtleties. They also take things very literally, which can lead to disagreements, misunderstandings and fights with their family and peers. And their facial affect, or expression, often appears flat.
Since many Asperger’s children have sensory issues, they dress according to comfort and not style, and their preference in clothes often adds to their oddness, and to the labels of “nerdy” or “weird.” This has been a sore subject for Heather on Model—the other contestants, and even the judges, have accused the potential model of “having no fashion sense.”
Sensory overload issues are a main characteristic of these children, as they are often sensitive to sound, taste, smell, light and/or touch. Their sensory issues might determine some of their unique behaviors, such as eating only crunchy foods because they like the texture, or becoming anxious and frustrated in a room with certain lighting or acoustics.
“The sensory problems can be extremely debilitating,” explains Grandin. “Extremely. And I think there needs to be a lot more research done on that because those sensory disorders prevent people from functioning in a job. How do you function in a job when the fluorescent lights look like a discotheque or a cell phone hurts your ears like a dentist’s drill?”
Another main characteristic is that these socially uninhibited children will say exactly what’s on their minds, without regard to social implications. They might find humor in things the average person won’t, or might be very literal and not find the humor in a subtle witticism that all their peers are laughing at. They just might not “get” a very obvious joke. They are often mistaken for impolite or rude. There are painful social implications for these children.
“When I was in high school,” Grandin recalls, “I used to get teased all the time, and it was absolutely, totally, terribly awful.”
Asperger’s kids sometimes seem to lack empathy, and their interactions often appear one-sided. This leads to the inability to form proper friendships, and often invites bullying and teasing. Many Asperger’s children are isolated and friendless. But, again, remember: One aspect does not necessarily fit all children with the disorder. There are Asperger’s children who can initiate and maintain friendships, or not exhibit the usual Asperger’s obsessive interest. That said, it is often the Asperger’s child’s preoccupation and full immersion in specific topics like trains, dinosaurs, movies, baseball and the minutiae surrounding those topics that is a strong identifier for the disorder. The main character of the film Rain Man has been the iconic role model for Asperger’s for years, but as Asperger’s is more highly researched and understood, that autistic-savant stereotype has been replaced by a wide spectrum of others who have the syndrome, including the apparently normal but quirky child.
Asperger’s children usually have a normal to superior IQ, but that is one of the most misleading misconceptions about the syndrome. Not all Asperger’s children are brilliant, as is the common perception; some are even mildly retarded.
“You can be Asperger’s and be Einstein,” says Grandin. “You can be Asperger’s and be not smart, too. You’re not going to be, like, totally mentally retarded. It’s a continuum. It goes all the way from kids who can’t speak, who are severely handicapped, all the way up to Einstein.”
Many Asperger’s children are hyperlexic, possessing a precocious fascination with letters or numbers as well as with language, a specific topic of interest and in behavior in general. Although the speech of Asperger’s children is often advanced, their social interaction is diminished, often because of a deficient ability for pragmatic, or social, speech. So, they can have an extraordinary vocabulary, but not necessarily know how to use it in a social sense. With their high-level, literal and unsubtle speech, they are bound for trouble when in a social context.
Unlike classically autistic children, who withdraw in physical interaction, Asperger’s kids might inappropriately hug or touch, or even smother another person with attention.
Where On The Spectrum?
As more of these awkward children are being drawn into the autism spectrum disorder syndrome mix, the numbers for the rate of autism rise significantly. The autism rate is now 1 in 150, according to the Centers for Disease Control and Prevention (CDC). Many of these children were not diagnosed or were misdiagnosed prior to this, especially girls, but are now falling into the high-functioning—having better cognitive and learning abilities—part of the autism spectrum, whether through a diagnosis of high-functioning autism, Asperger’s or PDD-NOS (the catchall term for quirky, odd kids).
Asperger’s floats around the autism spectrum as experts attempt to figure out where it really belongs. Some experts, such as Uta Frith, author of Autism and Asperger Syndrome, say Asperger’s children possess “a dash of autism.” Others argue its position in the spectrum. It has also been classified as a nonverbal learning disability, part of the obsessive-compulsive disorder (OCD) spectrum, attention deficit problems (ADD/ADHD) and even a conduct disorder. Others say that Asperger’s is no official disorder, but rather, weird kids with weird habits.
Asperger’s expert Tony Attwood, Ph.D., the author of The Complete Guide to Asperger’s Syndrome, says that Asperger’s kids just have a “different, not defective, way of thinking.”
He notes the Asperger child’s different perception of the world around them and their own unique way of experiencing sensory events. He points out their strong need “to seek knowledge, truth and perfection,” but they just do it differently than more typical children. To them, the solving of the problem is more important than what others might think about them: They see details, as opposed to the whole.
Autism advocates favor the inclusion of Asperger’s (and PDD-NOS) in their spectrum because it helps raise their numbers, which benefits awareness and research dollars. Often, though, the autism side separates itself from Asperger’s when it comes to advocacy and reaping the benefits of those research dollars. There is even a movement among some Asperger’s adults who do not want to be labeled, treated or “cured,” who consider themselves not handicapped by their disorder. They even call themselves “Aspies,” a term that infuriates advocates who think the disorder is debilitating.
But there are those, like Grandin, who thrive in their Asperger’s, even saying that there is no difference between a unique person with a couple of eccentric habits and a person with mild Asperger’s.
She says emphatically, “They’re the same thing. And nerd is another word for Asperger’s. Computer geek is another word for Asperger’s. They are the same thing. And they’re called geeks. They’re called engineers. They’re called musicians. It’s the same thing.”
Symptoms that seem benign (nerdiness, e.g.) are considered a disorder when they negatively impact the child’s wellbeing or ability to function in everyday activities. Remember, autism is a spectrum, and Asperger’s is not always about being slighty odd. It can also include severely impacted children, ones who make absolutely no eye contact, drool or who cannot/do not groom themselves. For the most part though, Asperger’s is on the high end of the autism continuum.
Talking And Walking
Social pragmatics and physicality are the two obvious giveaways that a child (or an adult) might have Asperger’s.
The National Institute of Neurological Disorders and Stroke (NINDS) at the National Institutes of Health (NIH) states that the Asperger’s child’s social interaction may be inappropriate and peculiar: “For example, they may engage the interlocutor, usually an adult, in one-sided conversation characterized by long-winded, pedantic speech, about a favorite and often unusual and narrow topic.” Also, although they are frequently self-described “loners” who want to make friendships, their “wishes are invariably thwarted by their awkward approaches and insensitivity to other person’s feelings, intentions, and non-literal and implied communications (e.g., signs of boredom, haste to leave, and need for privacy). More typically, autistic persons are withdrawn and may seem to be unaware of, and disinterested in, other persons.”
NINDS also points to physical clumsiness, stating, “Individuals with Asperger’s may have a history of delayed acquisition of motor skills such as pedaling a bike, catching a ball, opening jars, climbing monkey-bars, and so on. They are often visibly awkward, exhibiting rigid gait patterns, odd posture, poor manipulative skills, and significant deficits in visual-motor coordination.”
As part of Christian Clemenson’s Emmy-winning performance of an adult with Asperger’s, the character of Jerry “Hands” Espenson—an attorney in a fictional law firm on the television series Boston Legal—rarely makes eye contact, holds his palms rigidly fixed to the front of his thighs, and hops and purrs like a cat when under stress. Despite his actions, through behavior modification therapy, medication, and acceptance and encouragement from the show’s colleagues, he regularly wins the toughest of cases.
The All-Important Diagnosis
Asperger’s, like the other PDDs, involves problems, delays and deficits that require various areas of diagnosis and numerous forms of therapy. The best diagnosis and treatment is from an interdisciplinary team, including pediatricians, neurologists, psychologists and psychiatrists, behavioral therapists, physical therapists, occupational therapists and/or speech and language therapists.
It is important for parents to keep good notes on their child’s developmental growth; it will help in establishing the diagnosis.
Although the disorder often manifests itself in idiosyncratic and eccentric behaviors, do not be misled in thinking that it is not serious. As NINDS reminds us, “The disorder is meant as a serious and debilitating developmental syndrome impairing the person’s capacity for socialization, and not a transient or mild condition.” Intervention is crucial, although it might not always be effective.
The first doctor to be seen should be the pediatrician, who will run a full physical examination and then refer the child to a specialist, most likely a pediatric neurologist and pediatric psychologist or psychiatrist. The medical team will assess the child’s developmental history—speech onset and language patterns, specific interests, social interactions within the family and outside of the family, emotional health, self-concept and mood presentation.
Other assessments include neuropsychological functioning such as motor skills, executive functions, memory, visual-perceptual, visual memory assessment, manipulative skills, parts-whole relationships, visual-motor coordination, problem solving and concept formations and facial recognition. The team will check your child’s self-sufficiency and compensatory skills. There will also be IQ testing.
There will be many communication assessments conducted as well, such as verbal testing for articulation, comprehension, vocabulary and language construction, and nonverbal testing of gaze, physical signs and gestures, language subtleties such as humor, sarcasm and irony, and prosody (speech rhythms, volume, stress and pitch). The coherence and content of your child’s speech will also be evaluated.The team will also assess turn-taking, cue-taking and social rules of conversation. How your child spends his or her leisure time and how they react to unexpected situations will be observed, along with how they determine other people’s feelings and intent.
Grandin has her own thoughts on diagnosis: “You can’t diagnose this like diagnosing tuberculosis. It’s not precise. These categories are not precise. It’s a behavioral profile, like profiling a hijacker. And I’m being absolutely serious about that. It’s not a precise diagnosis where they can do this medical test and they can tell you what genetic strain of TB you’ve got. That’s precise. None of this stuff is precise.”
The Billion-Dollar Question: What’s The Cause?
The bottom line is that despite new public awareness and research, what we know about Asperger’s—its prevalence, etiology or inhereditedness—is incomplete. Add to that how different each Asperger’s child is from the other, and you have one of the biggest questions in modern medicine.
The potential causes are many, and all are being researched. They range from genetic and biological to environmental and social. There are many theories about diet and vaccines, age of the father and testosterone, mercury poisoning and other environmental toxins, and imitative modeling of family members.
What is becoming a popular consensus, though, is that despite the cause, it is believed that the child must have a genetic predisposition. According to Stephen M. Edelson, Ph.D., at the Center for the Study of Autism, in Salem, Ore., “Researchers feel that Asperger’s syndrome is probably hereditary in nature because many families report having an ‘odd’ relative or two. In addition, depression and bipolar disorder are often reported in those with Asperger’s syndrome as well as in family members. But the causes remain controversial and many.”
How Is It Treated?
Despite the various professionals who can work with an Asperger’s child, there are few therapies that have been proven to help, although there are many anecdotal success stories.
Asperger’s children benefit from the following therapies: occupational, physical, speech-language, behavioral, psychological and social-skills. All types of skill building are encouraged. It is important to work with Asperger’s children in the areas of empathy and social interaction, but it has been found that these children do not respond well to therapy that deals with self-awareness. Mostly, Asperger’s children are supported by services that are usually used by those with high-functioning autism, nonverbal learning disorder, sensory integration disorder and the assortment of specific learning disabilities, which can all mimic or be concurrent with Asperger’s.
“It’s like the Olympic rings and [how] they overlap a little bit,” explains Grandin. “You’ll have an area of intersection—that’s the way it is with [comorbid disorders like learning disabilities] and autism.”
In terms of school services, many advocates feel that securing an autism classification will provide the child with more services than a psychiatric classification, such as ADD, which was the norm until recently.
Since Asperger’s children live by their strict and rigid rules and routines, that can be used to help them function better and formulate positive habits instead of negative ones, which is the cornerstone of cognitive behavioral therapy (CBT).
The types of specific approaches that can be useful for the Asperger’s child besides CBT include work on communications and pragmatic speech, one-on-one therapy, and social-group interaction. Therapists and teachers can use imitative modeling, repetitive drills, auditory supplements and mirror training, and practice correction of ambiguous language problems.
But again, Grandin has the last word. It all starts at home, she says: Manners, the strict way they were taught in the 1950s, is what Asperger’s kids (and all children, she adds) need to learn. Once they have their manners set, they need to broaden their obsessions and interests, and find friends with those same shared interests. That’s how Asperger’s kids can best socialize. Once they make those relationships, they need the valuable skill of taking turns, whether it’s involved with playing or speaking.
And The Prognosis Is…
Good.
Depending on the severity of the disorder, a person with Asperger’s can lead a normal life. You probably know people who fit the bill, people who were probably never diagnosed with the disorder.
If the Asperger’s child grows up and follows through with their obsession, they will find enjoyment in their work. A young Asperger’s child plays with computers constantly, and he ends up as a computer programmer. Another is a precocious musician who becomes an accomplished composer. Some stay away from jobs where there is social interaction. Others go into fields where their focused interests are a plus, or where the environment is more “geek” friendly, like a computer tech company.
Ongoing research on Asperger’s is being conducted by the NIH, NINDS and Learning Disabilities Association of America, in a partnership with the Yale Child Study Center, so there is promise.
Grandin says that about 75 percent to 80 percent of her generation of Asperger’s adults (she is in her 50s) are in the workplace. They settle into jobs like the tech field where they are comfortable, remaining undiagnosed or keeping their diagnosis quiet, for medical insurance reasons. Grandin thrives in her autism, saying, “I like the clarity of thought” that she has with her form of Asperger’s.
“If you cured Asperger’s, you would have no musicians, you would have no scientists,” she adds. “[You would have no] famous people like Mozart, Van Gogh, Darwin, Carl Sagan, Thomas Jefferson, Einstein.
“I wouldn’t want to be not autistic.”
For a list of symptoms and the full informative and insightful interview with Dr. Temple Grandin, and to read the entire “Our Children’s Brains” series, log on to www.longislandpress.com.
This story was adapted from the book “Alphabet Kids,” by Robbie Woliver
Asperger’s Signs And Symptoms
An Asperger child can have any combination of the following signs and symptoms:
• abruptness
• aloofness
• appearance of boredom
• circumstantial speech (adding nonessential details)
• clumsy
• defensive to touch
• doesn’t always reach conclusion when speaking
• does not provide background for comments
• dyscalculia (impaired ability to solve math problems)
• dyslexia
• early speech precociousness
• eccentricity
• egocentric conversational style
• fascination with letters
• fascination with numbers
• flat facial expression
• inability to loosen up
• IQ could be very high, but IQs run the whole spectrum; IQs often fall in the above-normal range in verbal ability and in the below-average range in performance abilities.
• hyperlexia
• inability to form friendships
• inability to share enjoyment, interests, or achievements with other people
• inappropriate social interaction
• incessant talking
• insensitivity to other’s feelings
• interest in narrow or unusual topics
• jumps from topic to topic
• lack of “common sense”
• lack of empathy
• lack of emotional reciprocity
• lack of fear
• lack of proper body language
• learns in rote manner
• learns extraordinary amount of specific facts about a subject (train schedules, TV schedules, baseball stats, world capitals, etc.)
• little patience
• “little professor” syndrome
• monologue-like speech
• monotonic speech
• mood disorders
• naiveté
• no clinically significant delay in cognitive development
• no clinically significant delay in language
• no delay in self-help skills
• odd posture
• one-sided social interaction
• pedantic speech
• poor comprehension of facts
• poor eye contact
• poor fine motor skills
• poor gross motor skills
• poor nonverbal communication
• poor pitch levels in speech
• poor sound levels in speech
• poor social judgment
• poor speech inflections
• preoccupation changes every year or two
• preoccupation with certain topics and minutiae surrounding those topics
• preoccupation with parts of objects
• problem understanding jokes
• repetitive questions
• repeating words (perseveration)
• repetitive motor mannerisms
• rigid behaviors
• rigidity of habits
• rigidity of thought
• resists change
• sensitive to sound
• sensitive to touch
• social isolation
• speaks out loud what he or she is thinking
• stereotyped patterns of behavior
• stereotyped patterns of interests
• stereotyped motor mannerisms
• talks about minutiae
• talks “in-your-face”
• tangential speech
• temper tantrums
• uncoordinated
• visual-perceptual problems
• well-developed long-term memory
For More Information
If you suspect your child has Asperger’s, great places to start are The OASIS Guide to Asperger Syndrome by Barbara Kirby and Patricia Romanowski Bashe and The Complete Guide to Asperger’s Syndrome by Tony Attwood. Grandin’s books and videos are also recommended.
Jessica Kingsley Publishers is a good source of books on this and related subjects
www.jkp.com
National Institute of Mental Health/National Institutes of Health
[email protected]; www.nimh.nih.gov
Online Asperger Syndrome Information & Support (OASIS)
www.aspergersyndrome.org
More Advanced Individuals with Autism, Asperger’s syndrome, and Pervasive Developmental Disorder
MAAP Services For Autism and Asperger Spectrum
www.maapservices.org
Autism Network International (ANI)
ani.autistics.org
Autism Society of America
www.autism-society.org
Autism Research Institute (ARI)
www.autismresearchinstitute.com
MayoClinic
www.mayoclinic.com
National Institute on Deafness and Other Communication Disorders Information Clearinghouse
www.nidcd.nih.gov
Asperger’s Disorder Homepage
www.aspergers.com
Asperger Syndrome and High-Functioning Autism Association
ahaNY/Bethpage
www.ahany.org