Asperger\'s Syndrome About Sixty-Five Years

Asperger's Syndrome

About sixty-five years ago Hans Asperger put forward a description of a distinct profile of abilities and behaviors in young children that he called "autistic psychopathy" - which means autism ("self") and psychopathy ("personality disease"). Asperger termed children who had the syndrome "little professors" because they had the skill to discuss topics in deep detail. The Web site www.Spiritus-Temporis.comexplains that both Leo Kanner and Hans Asperger worked on defining what is now known as Asperger's Syndrome, but that Asperger was more "positive" in his assessment of the malady "due to the political climate at the time." That political climate was the Nazi regime, a fascist government that was known to be intolerant of weakness and disabilities.

Asperger is believed to have suffered from the very disease he is credited with naming; he was apparently a loner, a remote person who did not make friends easily, but a bright young man who was drawn to the poetry of Franz Grillparzer. The person given credit for later naming the disease "Asperger's syndrome" was Lorna Wing, according to Spiritus-Temporis.

While Asperger's Syndrome (as) is not to be confused with autism - because they are distinctly different to the trained medical mind - according to the best available science research as is indeed part of what is called "the autistic spectrum." and, in addition, wherever one finds information on as, there will inevitably also be data and research on autism nearby. The Harvard Mental Health Letter (Harvard University, (www.health.harvard.edu) states that as should be, by definition, set apart from "more severe forms of autism," which are linked with mental retardation, and nearly total social isolation. as, the Harvard publication continues, is distinguished from "high-functioning" autism on the grounds that it suggests "better verbal than nonverbal intelligence."

Some very recent and pertinent information relative to as vs. autism is found in research project conducted by the Department of Psychology, University of Florida, Gainesville (Teitelbaum, et al. 2006); the report explains that the "early severe deficits in social behavior and language abnormalities found in children with autism do not [necessarily] occur in as," hence, unfortunately, the as child tends not to be diagnosed until "much later than autistic children."

It is worth mentioning at the outset of this research that the category PDD-NOS (pervasive developmental disorders - not otherwise specified) is often "misleading" in the literature referencing as (Thompson, et al., 2004). The Department of Psychiatry and Behavioural Neurosciences at McMaster University (Ontario) compared (tested) 216 children with autism, 33 with as, and 21 children diagnosed with PDD-NOS, and found that for the level of functioning, the PDD-NOS children had scores somewhere "...between those of autism and as." Hence, since PDD-NOS has no "specific criteria" and is "often used as a diagnosis of exclusion," the researcher, teacher, parent and doctor need to approach all labels with knowledge and restraint.

Epidemiology of Asperger's Syndrome

Information on the prevalence of Asperger's Syndrome varies from source to source; According to Tony Attwood, author of the Compete Guide to Asperger's Syndrome and among the most respected international experts on as, the ratio (of patients he has worked with) is 4.68 males to one female; that reflects 984 clients with as (811 males and 173 females). He writes that one in every 250 individuals in Australia shows signs of as.

Meanwhile, research conducted by the Stanford University Child and Adolescent Psychiatry center (http://aarr.stanford.edu/)reports that "results have not been conclusive" in terms of the prevalence of as in the U.S. because only "four [empirical] studies" have been conducted (through 2003), and only "autism" was measured (while an estimated 2 per 10,000 within those autism demographics likely had as, the Stanford site claims). Dr. R. Kaan Ozbayrak (http://www.aspergers.com/index.htm) reports on a population study in Goteborg, Sweden; the "minimum prevalence of Asperger's Disorder was 36 per 10,000 children," Ozbayrak writes. Of those numbers, 55 out of 10,000 boys were diagnosed with as, and 15 per 10,000 girls had as. The male-female ratio in Goteborg's research was 4:1. Traditionally, according to the Website of Ozbayrak the prevalence of as is around 4 to 5 per 10,000 children. Meantime, another research project involving Sweden - Swedish Epidemiologic Study (Gilberg and Gilberg) - indicates that 10-26 children per 10,000 with "normal intelligence rate" had as. Overall, Wing and Gould show that 1.1 per 10,000 children who "had been autistic" earlier in life were shown later to have as.

Assessments of Children for Asperger's Syndrome

To know precisely what syndrome afflicts their child is among the most important pieces of information a parent can ever desire. There are currently a number of screening (assessment) tests that are being used with primary-school-age children, according to Williams, et. al, (www.sagepublications.com).They include the Australian Scale for Asperger Syndrome (Attwood, 2001); the Children's Social Behavior Questionnaire (Luteijn, et al., 2000); the Pervasive Developmental Disorders Questionnaire (Baird et al., 2000); the Asperger Syndrome Screening Questionnaire (Ehlers and Gillberg, 1993; Ehlers et al., 1999); the Autism Behaviour Checklist (Krug et al., 1980); the Gilliam Autism Rating Scale (Gilliam, 1995; South et al., 2002); and the Social Communication Questionnaire (Berument et al., 1999).

Also available for professionals and parents - listed on the Web site of the company called "Publishers, Psychological and Educational Publications" - is the Asperger Syndrome Diagnostic Scale (ASDS), which can be completed, say the authors, by "anyone who knows the child...well." That includes parents, teachers, siblings, paraeducators, speech-language pathologists, psychologists, and other professionals who have close contact with the subject. There are 50 items on the questionnaire, all "yes/no," which can be answered in roughly fifteen minutes. This test is designed for children 5 to 18 years of age. Of course this test is only the preliminary evaluation for an as child; there is a more in-depth assessment proceeding needed once the initial identification of the affliction is completed.

Another among the several assessment strategies that may soon be widely used for diagnosing as in children is the Child Asperger Screening Test (CAST), which is being researched for use in the general population by the University of Cambridge, UK, according to an article written by professor Jo Williams and six Cambridge colleagues (www.phpc.com.ac.uk).

CAST initially consists of a parental questionnaire; to test its accuracy, researchers distributed the questionnaire to 1,925 children ages 5-11 in Cambridgeshire schools in the UK. A sample of participants received a complete diagnostic assessment, conducted "blind to screen status," the UK report explained. The sensitivity of the CAST, "at a designated cut-point of 15, was 100%"; the specificity was 97% and "...the positive predictive value was 50%," when using the group's "consensus diagnosis as the gold standard."

The authors point out diagnosis for as can be as late as 11 years of age, even though parents may have been worrying about the unusual and even antisocial behavior of their child for several years. With good screening such as CAST potentially could provide, though, the diagnosis could well be done much earlier, which would be desirable, the authors write, to allow time for "genetic counselling"; to gain strong parental support; and also to allow for "earlier intervention." And though the authors believe CAST is an honest evaluator of as in children, there is presently "insufficient evidence" to recommend screening for "autism spectrum conditions" (e.g., as) as a public health service, the writers noted.

In order to have a grasp of all the effort that goes into testing an assessment strategy for its validity and applicability, it is interesting to follow this CAST survey; indeed, one of the reasons that the diagnosis (early) of as in younger children has been relatively slow in emerging is the difficulty in testing the tests and questionnaires. Researchers are sometimes feeling their way through the maze of behavioral and institutional dynamics. In terms of the 1,925 students who took the CAST questionnaire home with them, the response rate from parents was 26%, overall. That means 74% did not feel it was important enough to fill out properly.

And when the CAST questionnaires were tallied and those parents whose children potentially might have as were identified, the schools with the highest response rate (33% of parents filled out the questionnaire) ended up with the lowest percentage of children on the "special needs resister" (18%); and conversely, the school with the lowest number of returned questionnaires (20% of parents completed the questionnaire) had the highest percentage of students on the "special needs register" (66% had some kind of issue relative to ADD, autism or as). This shows that those who perhaps need help the most were the least likely to participate in a process that offers help. The authors say that "this study demonstrates that CAST has a good accuracy for use as a screening [for as] test, with high sensitivity."

There is, as has been mentioned, an urgent need for healthcare professionals to develop the tools for early diagnosis (leading to early assessment strategies); and in that regard there is exciting research being reported by Department of Psychology, University of Florida, Gainesville (Teitelbaum, et al. 2006). The article introduces an innovative research strategy; doctors are observing - in magnified format - key movement patterns in infants who may be showing early signs of as. To open the door to a "more accurate way of distinguishing autism from as," Teitelbaum explains, researchers are employing the "Eshkol-Wachman" movement notation (EWMN), which was originally developed for dance and choreography. The EWMN, in short, allows the most delicate deficits in infant movement to be detected.

Because the EWMN system was designed to allow choreographers to write movement down on paper "that dancers could later reconstruct in its entirety," the EWMN is proved to be "very detailed in analyzing a person's movement." Thus, the research team from the University of Florida asserted, when 16 videotapes from parents whose children had been diagnosed with as were analyzed using the EWMN, this system of research was borne out as valid. The EWMN technology detailed patterns of movements in those 16 infants - "Moebius mouth (abnormal shape during smiling); "abnormal or asymmetrical tonic neck reflexes when the child rights from supine to prone positions"; failure to use "protective reflexes when falling" and more - in such a graphically accurate portrayal that the research article concludes EWMN may well reveal "early detection markers" in many infants for the future.

Is as hereditary? The Harvard research letter alluded to earlier explains that about "a third" of parents of children with as will have "at least some related symptoms"; still, there is "no evidence" as yet for a "specific organic cause" for as. One working hypothesis regarding people with as is that they lack a "theory of mind" - in other words, they lack the intuitive understanding that people they come into contact with have their own thoughts and feelings. As a result of that gap in intuitive understanding, the as person "...cannot imagine their way into the minds of others to anticipate their responses," the Harvard letter explains.

The use of brain scans in research reveals that "normal" people use the amygdale (the "center of emotion") when talking to another person and making intuitive value judgments about the facial expressions the other person exhibits during the conversation. But in those afflicted with as, the area that "lights up" is the "prefrontal cortex," which is a seat of "judgment and planning," the Harvard letter states. In other words, the as person is pondering the meaning of facial expressions he or she sees, rather than responding to it immediately.

Treatment and Intervention available for Asperger's

According to the National Institute of Neurological Disorders and Stroke (NINDS), the "ideal" treatment for as coordinates therapies that address the three "core symptoms" of as: "poor communication skills; obsessive or repetitive routines; and physical clumsiness." What is agreed upon by professions in the healthcare industry is, first, the "earlier the intervention the better" (and hence the earlier the detection of as the better); second, any effective program "builds on the child's interests" and "actively engages the child's attention in highly structured activities"; and thirdly, a successful intervention "provides regular reinforcement of behavior."

Meanwhile, children who suffer from as are eligible, under federal law, for special educational services appropriate to their needs, according to the Harvard Mental Health Letter. The as child qualified for teacher aide assistance, tutoring, "a special curriculum," and in some instances, a special school. What as students need in terms of educational support are consistent and very clear instructions, and a "routine" they can count upon. The instruction they require includes learning to "maintain eye contact," learning to read others' facial expressions, and to grasp "what is and what is not socially acceptable."

Their teachers need to work on them so they understand, for example, why they need to wait in the lunch line and why teachers and strangers cannot be approached in the same way as their family members and dear friends. "Sometimes," the Harvard letter concludes, "it is less important to change" the as child than it is to "change the attitudes of others towards them."

Tony Attwood's lectures and printed materials are widely praised for the quality of their intervention strategies; in Attwood's "Appropriate Educational Placements for Children with Asperger's Syndrome," he emphasizes intervention through small-group interaction. His strategies are as follows: "Encourage the child to be social, flexible, and cooperative..."; "help the child recognize social cues"; "provide personal tuition on...managing emotions"; help the as child to "develop special interests"; implement a program to "improve gross and fine motor skills"; help the child improve "Theory of Mind" and conversational skills.

Attwood asserts that the "most important attributes" in a learning environment for the as child "are the personality and ability of the class teacher." The worthwhile teacher in an as environment has a "calm disposition," is "predictable" in emotional reactions, "flexible" with the curriculum vis-a-vis the as child, and has the ability to see the world as the as child does. Moreover, the teacher needs to have "emotional and practical support from colleagues and the school administration."

Indeed, there are medications that are being prescribed - cautiously, in a controlled research setting - for as, according to www.aspergers.com;those include, for preoccupations, rituals and compulsions, SSRIs (fluvoxamine, fluoxetine, and paroxetine); and Tricyclic Antidepressants (clomipramine); and for irritability and aggression, mood stabilizers like valproate, carbamazepine, and lithium, and Beta Blockers such as nadolol and propranolol.

And meanwhile he U.S. National Institutes of Health (www.ClinicalTrials.gov) is currently conducting several important as studies; one, with the Indiana University School of Medicine, testing Aripiprazole on children 4 to 17 years of age (Kohn, et al. 2005); another clinical trial is ongoing at the UCLA, testing cognitive behavioral therapy for anxiety disorder in children with as (Drahota, et al., 2006); a third project in search of a treatment for as is the Janssen Asperger's MRS Risperidone Study (Medical College of Georgia), which will target 14 patients older than 6 years, using the drug Risperidone (Hutcheson, et. Al, 2006). There are no results available for any of the above clinical trial procedures, but the fact that there are numerous / diverse approaches to finding potential solutions to the as problems is encouraging.

Conclusion

Tony Attwood, among the leading researchers into the dynamics of as, has written an article which could be helpful on a very realistic, hands-on level for parents, family members, teachers and others who work with as patients. It is titled "Strategies to Reduce the Bullying of Young Children with Asperger Syndrome," and anyone who has been around schools at any level or any grade knows bullying is an ongoing and serious problem in the playground and elsewhere around schools.

When considering how vulnerable all children are to bullying, imagine how much more vulnerable Asperger Syndrome children would be to bullying, given that they are very "different" and not very social in many instances. Attwood explains that typically an as child has a problem developing friendships that are "...appropriate to the child's developmental level"; and as children have impairments when it comes to regulating social interaction through the use of "non-verbal behavior such as eye gaze, facial expressions and body language."

Also, Attwood mentions that as children lack the social and emotional ability to reciprocate and empathize with others around them (causing some to think they are insensitive when actually they can't help themselves in this regard); and finally, as children have a tough time being able to "identify social cues and social conventions" (Attwood, 2004).

Additionally, the as child may suffer from signs of "motor clumsiness" and may well be "hypersensitive to auditory and tactile experiences," Attwood goes on. Moreover, the as child likely has difficulty planning, organizing and keeping up with his or her own performance in school and elsewhere. All these shortcomings make it difficult for the as child to be placed in a mainstream school situation per se, let alone in a mainstream situation where a bully may be lurking around the corner during recess. In this regard, Attwood suggests there is a "distinct risk associated with integration" - the "propensity of children with Asperger Syndrome to be bullied" (Attwood, 2004). In the event that bullying is a reality for the child with as, Attwood offers a number of ideas to prevent the as child from being harassed mercilessly, especially in the preschool years, but continuing on through the grades.

The most likely times that bullying can occur (for as children and all children who are vulnerable) is in the hallway, on the bus between school and home, during sports activities - and anytime when a "peer audience or bystanders" are present. The tactics are "obscene gestures," the stealing of possessions, verbal torment, and malicious gossip and actually hitting or pushing. Other forms of bullying can be just "not being invited to a social event," Attwood explains, or being excluded ("peer shunning") from a group that is engaged in a game; bullying can take the form of "not being included in a group at meal time" too, Attwood explains.

The problem with being bullied, if you are a child with Asperger's Syndrome, Attwood goes on, is that as children are "socially naive, trusting, and eager to be part of the group." Children with as can be "impulsive in their response to an act of bullying, and can react without thinking of the consequences to themselves...and when he or she retaliates with anger" the possibility of injury is very real. So what is the best strategy for the as child? The key is to have a "team approach," according to Attwood; that includes the as child, school administrators, teachers, early childhood professionals, parents, psychologists, other children, and the child who is the bully. Perhaps there needs to be a change in existing school policy with reference to bullying, when it comes to protecting the as child from harm.

That said, it is a certainty that the staff (many of whom may be part time "aides" to teachers) should be educated as to this problem and be willing to report any incident that they see. Also, "self-talk" strategies can be used with as children; they need to be reassured by teachers and family that they are not at fault, that they are not deserving of mean comments or actions. The self-talk to be taught to the as child: "I don't deserve this, stop it." or, "I don't like that, stop it." This is preferable to the child simply reacting by hitting back or crying. Another self-talk solution might be to say, "Are you teasing me as a friend or not as a friend?" Or perhaps, "What you are doing is making me feel confused and angry" (Attwood, 2004).