Understanding Asperger’s Syndrome.
A 16-year-old girl, trapped in a prison without walls.
Esther came across a crumpled up-paper on the floor of the den. Curious, she straightened it out. It was a poem, in her daughter Sara’s handwriting. “If You But Dared,” the title read.
i was a child/who was hurting
no escape except through yearning
nursing wounds no one could see
anesthetized by fantasies
Tears of wonderment came to Esther’s eyes as she scanned the lines her 16-year-old had written. Wounds no one could see… Those must have been the wounds of loneliness. Sara had been a loner all though elementary school, and now in high school, the pattern was continuing.
The jokes, camaraderie and easy conversation characteristic of young teens eluded her. She was moody and remote, absorbed in her books. She did well in school with barely any effort but her social skills lagged far behind her academic achievement. She denied being unhappy and refused to talk about her feelings.
But misery cried out from the page.
memories bring back the ache
pain that ebbed once more awake
the years roll back the sense of loss
once more a child waits to cross
a deserted corner far from home
in the dark she lingers alone
a traffic light that never changes
and so she waits and waits for ages
to all of you who passed her by
noticed not her haunted eyes
all of you who might have cared
reached out a hand if you but dared
unlock the prison without walls
find the captive sad and small
no voice to call no words to share
no brush to paint the deep despair
you never saw you never asked
what lay behind the child’s mask
my heart still hurts from that neglect
despite the years I can’t forget
Esther’s eyes blurred with tears. The description of a forlorn little girl in an invisible jail shocked Esther that her daughter perceived herself as abandoned by everyone. You never saw you never asked… How they had struggled to understand and help her! But she never allowed anyone inside her “cell.” Like the captive in the poem, she seemed to have no voice to call, no words to share.
Over the years, the family had gotten used to Sara’s idiosyncrasies. She was painfully shy and inhibited around people. Feelings easily overwhelmed her. She broke down in tears over any degree of disappointment, stress or frustration – and couldn’t communicate to others what the trouble was.
Advanced scholastically, Sara nevertheless had no idea how to engage in the simple amenities of routine conversation. It made her appear slow-witted, immature, or as children labeled it, “weird.”
First Grade Blues
It had all started out so differently.
“She was so cute and endearing when she was little. She had an amazing vocabulary, far beyond her age level,” Sara’s mother recalled. “When she piped up, you couldn’t help but smile. But trouble started as soon as she hit first grade.”
As talkative and spirited as the little girl was at home with her parents and siblings, at school Sara seemed withdrawn and wrapped up in her own world. She daydreamed and doodled in class. At recess she wandered off by herself, gazing wistfully at the games others were playing.
We attributed her apartness to boredom.
“At first we attributed her apartness to boredom,” her mother explained. “But that didn’t explain the other ‘oddities’ – the extraordinary shyness, a stiff, awkward gait, not swinging her arms like most kids when they walk… and her difficulty in maintaining eye contact. She was always shy, but this odd behavior seemed to have developed when she first stared mixing socially with other kids.”
Sara resisted her parents efforts to arrange for counseling. It wasn’t until she was in tenth grade that her parents induced her to cooperate with an evaluation. The child psychologist who evaluated Sara called in her parents to discuss the findings: Sara suffered from a neurological disorder called Asperger’s Syndrome. They blinked in shock. What was Asperger’s Syndrome?
Wanting Emotional Connection
Until 1994, no one, including psychologists and behavior specialists, knew much about Asperger’s Syndrome. The disorder went unrecognized, and children who had it were simply labeled "weird," “off-beat” or “emotionally disturbed.”
Named for Hans Asperger, an Austrian physician who first identified it in the 1940s, Asperger’s was first defined as a mild variant of autism, but that designation has been contested by many scientists who feel it is not part of the autism spectrum.
According to psychologist Michelle Ver Ploeg in Asperger’s Syndrome in Young Children, though some symptoms seem similar to classic autism, there are important differences. Asperger's chidren and adults, unlike those afflicted with autism, often show true emotional connectedness, including an ability to empathize that is uncharacteristic of autism.
Those with Asperger's Syndrome have problems with nonverbal communication and the ability to draw social inferences. The social cues that guide most people through day-to-day interactions are a foreign language to them.
Put simply, these children desperately want friends, but don’t know how to make or keep a friend. By contrast, those with autistic symptoms are emotionally remote and disconnected, for the most part incapable of a mutual, two-way relationship.
Newly Diagnosed in 1994
It wasn’t until 1994 that Asperger’s Syndrome finally became an official diagnosis in standard medical lexicons. Slowly, awareness of how this disorder impacted children began to filter down to educational channels. Schools finally had an approach to understanding those 'odd' students they'd been diagnosing with ADD, learning disabilities and bipolar disorder – all of which come with various symptoms that may mimic Asperger’s.
Even today, Asperger’s Syndrome is not widely recognized by the public or by health care providers. An estimated one out of every 1,000 people suffers from the syndrome. Much progress has been made in identifying children with the disorder, but there remain thousands of adults who were never correctly diagnosed.
Asperger’s, or “Aspies” as some humorously refer to themselves, generally have average-to-superior intelligence and – like Sara – advanced early language acquisition. However, they often seem to be “mind-blind” when it comes to social interactions – failing to perceive what is obvious to everyone else by “reading” body language, eye-gaze and facial expression.
They may display an intense preoccupation with an unusual focus of interest, as well as repetitive behaviors such as rhythmic rocking or flapping of the hands.
The Young Child: A preschool child might demonstrate complete unawareness of the basics of social interaction – how to join a game or share toys or belongings. He or she may be oblivious to basic social cues like waving hello and goodbye, smiling one’s pleasure, frowning or glaring to show displeasure – and may use these non-verbal messages totally inappropriately.
Elementary School-Age: One often hears the phrase, “poor pragmatic language skills” in relation to children with Asperger’s. This means that the individual cannot hit on the right tone and volume of speech. Their voices are often flat and expressionless, too loud, or too high-pitched. The person may stand too close, avoid eye contact, or stare at people. Many are clumsy and have visual-perceptual difficulties.
Non-verbal learning difficulties, subtle or severe, are common, especially in reading comprehension and math work that demands imaginative problem-solving and critical thinking.
The child may become fixated on a particular topic and bore others with incessant talk even when other children have given clear signals that they are not interested. Some have difficulties tolerating changes in their daily routine and become agitated when faced with an abrupt change in schedule. Change must be introduced gradually.
Their behavior evokes ridicule, dismissal or annoyance from peers.
The Adolescent: In adolescence, social demands become more complex and social nuances, more subtle. This may be the most difficult time for individuals with Asperger's. They are so obviously “not with the program” that their behavior evokes ridicule, dismissal or annoyance from peers. Because of his social naiveté, a teenager with Asperger’s may not realize when someone is trying to take advantage of him. He can be especially vulnerable to manipulation and peer pressure.
As individuals with Asperger’s enter adolescence, they become acutely aware of their differences and keenly sensitive to rejection. This may lead to depression and anxiety. The depression, if not treated, may persist into adulthood.
Treatment for Asperger’s Syndrome
Social skills training is one of the most vital components of treatment for all ages. According to experts in the field, the individual needs to learn body language with the thoroughness and consistency that one must learn a foreign language when living in a foreign land.
Those with Asperger’s must learn concrete rules for eye contact, social distance and more normal body language, including posture and gait. Since many people with this disorder are clumsy and have terrible table etiquette, they must be taught how to conduct themselves at mealtimes without evoking distaste in those near them.
Since they lack self-awareness and have trouble reading other people, “Aspies” do not realize that watching someone wolf down his food, eat noisily, or take second or third helpings when not everyone has had a first portion, can be upsetting.
They need concrete lessons in identifying emotions (their own and others’); in practicing good hygiene, phone skills, car and bus decorum, and how to win and lose. They need careful instruction on how to take care of personal attire; how to respect other’s ownership of belongings; how to make an appropriate gesture of affection, and how to know when it’s inappropriate to give a hug or a pat on the back.
They need a great deal of practice and role-play regarding how to build a friendship; how to make conversation, how to share and to wait with patience; how to handle being upset; what constitutes lying; how to win and lose; how to be part of a discussion group or project.
It’s easy (but a trap!) to turn social skill goals into a negative checklist of behaviors to be corrected. Don’t fall for this. The idea is not to make life easier for the parent or teacher; the idea is to make life easier for the child. That’s why the emphasis should be on explaining, teaching and practicing – not criticizing, ridiculing or blindly correcting.
It’s important to make the lessons fun, helpful and non-threatening. Use games, charades, jokes, cartoons, movies, story books, field trips or whatever else works, so that the child will grow while feeling successful – as opposed to incompetent.
Many children with Asperger’s can be included in mainstream classrooms. But those with a more severe case will need to be in small, self-contained classrooms or special schools.
Research shows that most children with Asperger's learn intellectually rather than intuitively. Instead of role modeling or subtle hints, they need concrete information, explanations and practice.
Sara first came to treatment in high school, after experiencing untold ordeals of social isolation and loneliness. She was fortunate to have a relatively mild form of Asperger’s, and the gift of being able to use the medium of writing to overcome her impairment in social skills and communication.
On paper, she came alive – almost as a different person. Even her parents were astonished to discover what a vibrant life Sara led in her private writings. We helped her tap into this talent and convert it into a tool for becoming more in sync with those around her. We taught her to dig deep into herself and discover the emotions behind the “child’s mask” she had written about in her poem.
She was taught how to “read” body language.
We taught her to generalize these emotions to others. We helped her learn how to “read” facial expression and to interpret social situations through facial expression, tone of voice and body language. A rigorous program of social-skills training over many months concentrated on helping Sara maintain eye contact and learning how to initiate conversation with others.
Perhaps the most heartening sign of Sara’s progress came with a beautiful poem she wrote as she prepared to graduate high school. This poem had the same rhythmic cadence as her earlier one, but it couldn’t have been more different. This poem celebrated friendship, and evoked a sense of wind, sun and laughter.
For those who read the poem, the tears it evoked were tears of happiness… for the child who at last felt a part of humanity.