What is the definition of social awkwardness? If you are a kid, it might mean standing too close, talking too loud or for too long, turning your back on a conversation, or never meeting your friend’s gaze. It might mean being physically awkward as well, never really getting the hang of team sports or the rhythm of a pick up game on the playground. It might also mean feelings of severe anxiety in the presence of large, noisy groups of people or unusual situations. In the past, well meaning educators and parents might have thrown up their hands and labeled these kids as lovable misfits, without closely examining the common thread that ties these behaviors together. Or in more severe cases, the parents would climb on the mental health merry-go round and come away with conflicting answers and more questions.

Now a relatively new diagnosis has offered a name to these debilitating characteristics. It’s called Asperger’s Syndrome, a neurocognitive disorder defined by a severe shortage of social skills, lack of eye contact, attention issues, clumsy motor coordination and often a peculiarly intense over focus on particular interests.

“We had been told he was retarded, that he had a seizure disorder, we had him tested for fragile-X syndrome.” says Susan Brooks, a mother of a 13 year old boy with Asperger’s Syndrome. Asperger’s Syndrome has qualities that mimic numerous other diagnoses, and often many children and adults find themselves mislabeled.

"The syndrome has fallen between the cracks of (different) disciplines as well as the educational system.” says Dr. Fred Volkmar, professor of child psychiatry at Yale University School of Medicine.

In order to serve his clients more completely, Dr. Volkmar knew AS needed to be teased out of the vast tangle of learning disorders that could be labeled on a child who in reality had AS. In 1994, he and his colleague Dr. Ami Klin, were instrumental in AS’s inclusion in the Diagnostic and Statistical Manual, a bible for mental health professionals. Asperger’s Syndrome was named for pediatrician Hans Asperger, who in 1944, observed a small group of boys who displayed unusual behaviors, both linguistically and socially. But his doctoral thesis on this subject went largely unnoticed until the early 1980’s when renewed interest revived the pursuit of study on this subset of the population.

Asperger’s Syndrome lies on the high functioning end of the autism spectrum. “It’s a bit like visual impairment, you’ve got kids who are blind, that’s classic autism, then you’ve got kids who need to wear glasses, that’s AS.” explains Dr. Tony Attwood, a clinical psychologist and author of “Asperger’s Syndrome: A Guide for Parents and Professionals.” But unlike autism, children with AS often have no language difficulties or delays. In fact, precocious verbal ability often masks their troubles with life skills. “You might have a ten year old with the verbal skills of a 14 year old, the non-verbal skills of a 7 year old, and the social skills of a 2-3 year old.” says Dr. Volkmar. Kids who are unable to decipher body language and facial expressions are at a disadvantage because, according to Dr. Volkmar, up to 80% of communication is non-verbal. Misreading these social cues leads to great difficulties when making friends and sustaining relationships.

“Everything conspires to the worst set of circumstances for kids with this kind of disability,” explains a mother of a middle schooler with AS, “my son’s reactions are off because its hard to know -- is it good natured joshing or vicious horrible teasing?” Dr. Volkmar says “It’s not that (these children) are uninterested in social interaction, it’s that they are so inappropriate. Their social difficulties are severe and persistent.” The reason for these poor non-verbal skills emanate from a dysfunction in the temporal lobes of the brain.

In AS patients, the right side of the brain, which governs cognitive ability, is thought to overcompensate for the diminishment of function in other areas of the brain. According to Dr. Attwood “They solve social reasoning problems as others would solve an algebra problem, with intellectual effort.”

This kind of impairment means other kinds of problems as well. The ability to integrate the kaleidoscope of every day sensory information is very difficult for those with AS. An overload of sights, sounds and smells can overwhelm the person with acute anxiety. “They go to school, which I call a social minefield, and they get very anxious and they may get very angry.” says Dr. Attwood. This anger is often misinterpreted by teachers as simply oppositional, but it is usually a reaction to overstimulation. “Teachers see them as troublemakers, as bad kids, as defiant kids, as kids who don’t want to go along. They don’t appreciate their weaknesses in other areas.” says Dr. Volkmar.

These children have many strategies for keeping their anxiety at bay, and one of those strategies can be a hallmark of Asperger’s, what the diagnostic criteria calls their “restricted and repetitive behavior patterns.” This partly describes the narrow interests that can consume much of these kids’ free time and conversation. Though the subject matter may change over the years, when these kids find an interest or a hobby, they often become its slave rather than its master. ”This is not your usual child who has a penny collection or an interest in dinosaurs. An Asperger’s child graduates to other things that become much more unusual.” says Dr. Volkman, “I know of someone who knows the name of every member of Congress, the wife’s name and the street address, the children’s names, their date of birth, the whole nine yards.” The interest can become the child’s whole world and often is the initial starting point of conversation, underscoring their social awkwardness. It also can be a place of solace, of predictability for those who find their world a chaotic, random place. “I think of Tom’s interest as a comforting distraction, not necessarily a negative.” says Susan Brooks, about her son, “The obsessing comes when he’s feeling overwhelmed and that’s a clue to me to find out what is really going on.”

Dr. Attwood believes that tenacious individuals with Asperger’s have made valuable contributions to the world. “I don’t see AS as a tragedy ... I see that many advances in science and art have been made by people with AS with their different way of thinking.” Indeed the precocious abilities of those with AS have enabled many to excel in their chosen fields. But at school age, their very intelligence camouflages their struggles in managing the rest of their lives. It is not long before the social problems come nipping at the heels of their academic proficiency. “In almost every instance, eventually, the AS gets in the way. The social aspect affects the educational component. “ says Dania Jekel , executive director of the Asperger’s Association of New England, an organization which runs support groups and is a clearing house for information on the syndrome.

Treating AS requires fine tuning the therapy to the patient’s most obvious need. Some might need to feel comfortable starting a conversation and may attend a socialization group to work on pragmatic language skills. Others might need to integrate their world more completely so that they can transition smoothly from one activity to another. This might mean cognitive therapy with a mental health professional.

Because most children with AS have normal intelligence, many attend conventional schools. Once there, most experts recommend immersing the child in as many mainstream activities as possible. Because sensory overload can come with team sports, lots of AS kids choose to participate in sports that emphasize the individual , such as track or skiing. Psychiatrists and mental health professionals often prescribe medication to combat the related twin demons of AS, anxiety and depression. As Dr. Attwood points out “They (those with AS) are acutely aware of being different and that may lead to secondary psychiatric problems.”

Because AS is new on the mental health radar screen, parents often find themselves doing battle with administrators and educators. The diagnosis requires parental vigilance and an ability to take the long view. Many with AS lead full lives, complete with jobs and marriage. “What these individuals do, by their heroic endeavors, and, we hope, training, will learn intellectually how to solve social questions.” says Dr. Attwood. But for some, merely making these kids “pass” in the larger world undermines their uniqueness. Susan Brooks says “These kids need to be accepted for themselves, I don’t think they need to be changed. I think they need to find their niches ... and a lot of acceptance will help them blossom.”

LIST OF RESOURCES

Information on Asperger’s Syndrome can be found in books and on the internet. Because there is much on going research on this topic, the Web keeps current with the latest news and treatment options. Discussion groups on varied topics abound, as well as message boards. Parent to parent advice is often compassionate and on the mark. As with any Web sites, make sure the source is legitimate. Here are some of the most comprehensive sites.

WEB SITES:

www.udel.edu/bkirby/asperger/
This site is called O.A.S.I.S. and has many topics for those who want more information. Lots of links to other sites.

www.asperger.org
Another comprehensive site, run by a group called ASPEN of America.

www.aane.org
This site is maintained by the Asperger’s Association of New England. It lists up coming area conferences and their extensive schedule of support groups. Also keeps a good reference list up to date.

BOOKS:

Asperger’s Syndrome: A Guide for Parents and Professionals by Tony Attwood

Pretending To Be Normal: Living With Asperger’s Syndrome by Liane Holliday Willey

Asperger’s Syndrome: A Practical Guide for Teachers by Val Cumine, Julia Leech, and Gill Stevenson

Autism and Asperger’s Syndrome Edited by Uta Frith

OASIS Note:  (NOT part of Globe article) All of the above mentioned books can be ordered on line from Amazon.com at OASIS Bookstore. Orders placed through this link help support the OASIS webpage.

ORGANIZATIONS:

Asperger’s Association of New England, also known as AANE, P.O. Box 242, Newton, MA 02466 (617) 527-2894

The Parent/TILL Partnership for Autism, 20 East Brook Road, Dedham, MA 02226 (781) 302-4733

Family Autism Center 789 Clapboardtree Street, Westwood, MA 20290 (781) 762-4001, ext. 329

Community Autism Resources, 105 Bank Street, P.O. Box 1511, Fall River, MA (508) 677-9239

  The O.A.S.I.S. (Online Asperger Syndrome Information and Support) Web Page and all O.A.S.I.S. links from the main page and formatting of those links (http://www.udel.edu/bkirby/asperger/)are © by Barbara L. Kirby For permission to reprint, please contact bkirby@udel.edu

Home to O.A.S.I.S.