A better understanding

[Guest guest]

Adam here, since I'm not the best at elaborating upon issues

and topics, I thought it would be most helpful to post

something which I copied from a website which, I hope helps to

inform others about my " uniqueness " as such.Anyways, I'll get

back to everyone later this week.

Adam

Introduction

Asperger Syndrome (AS) is a severe developmental disorder

characterized by major difficulties in social interaction, and

restricted and unusual patterns of interest and behavior. There are

many similarities with autism without mental retardation (or " Higher

Functioning Autism " ), and the issue of whether Asperger syndrome and

Higher Functioning Autism are different conditions is not resolved.

To some extent, the answer to this question depends on the way

clinicians and researcher make use of this diagnostic concept, since

until recently there was no " official " definition of Asperger

syndrome. The lack of a consensual definition led to a great deal of

confusion as researchers could not interpret other researchers'

findings, clinicians felt free to use the label based on their own

interpretations or misinterpretations of what Asperger

syndrome " really " meant, and parents were often faced with a

diagnosis that nobody appeared to understand very well, and worse

still, nobody appeared to know what to do about it. School districts

are not aware of the condition, insurance carriers could not

reimburse services provided on the basis of this " unofficial "

diagnosis, and there was no published information providing parents

and clinicians alike with guidelines on the meaning and implications

of Asperger syndrome, including what should the diagnostic evaluation

consist of and what forms of treatment and interventions were

warranted.

This situation has changed somewhat since Asperger syndrome was

made " official " in DSM-IV (APA, 1994), following a large

international field trial involving over a thousand children and

adolescents with autism and related disorders (Volkmar et al., 1994).

The field trials revealed some evidence justifying the inclusion of

Asperger syndrome as a diagnostic category different from autism,

under the overarching class of Pervasive Developmental Disorders.

More importantly, it established a consensual definition for the

disorder which should serve as the frame of reference for all those

using the diagnosis. However, the problems are far from over. Despite

some new research leads, knowledge on Asperger syndrome is still very

limited. For example, we don't really know how common it is, or the

male/female ratio, or to what extent there may be genetic links

increasing the likelihood of finding similar conditions in family

members.

Clearly, the work on Asperger syndrome, in regard to scientific

research as well as in regard to service provision, is only

beginning. Parents are urged to use a great deal of caution and to

adopt a critical approach toward information given to them.

Ultimately, the diagnostic label - any label, does not summarize a

person, and there is a need to consider the individual's strengths

and weaknesses, and to provide individualized intervention that will

meet those (adequately assessed and monitored) needs. That

notwithstanding, we are left with the question of what is the nature

of this puzzling social learning disability, how many people does it

affect, and what can we do to help those affected by it. The

following guidelines summarize some of the information currently

available on those questions.

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Background

Autism is the most widely recognized pervasive developmental disorder

(PDD). Other diagnostic concepts with features somewhat similar to

autism have been less intensively studied, and their validity, apart

from autism, is more controversial. One of these conditions, termed

Asperger syndrome (AS) was originally described by Hans Asperger

(1944, see Frith's translation, 1991), who provided an account of a

number of cases whose clinical features resembled Kanner's (1943)

description of autism (e.g., problems with social interaction and

communication, and circumscribed and idiosyncratic patterns of

interest). However, Asperger's description differed from Kanner's in

that speech was less commonly delayed, motor deficits were more

common, the onset appeared to be somewhat later, and all the initial

cases occurred only in boys. Asperger also suggested that similar

problems could be observed in family members, particularly fathers.

This syndrome was essentially unknown in the English literature for

many years. An influential review and series of case reports by Lorna

Wing (1981) increased interest in the condition, and since then both

the usage of the term in clinical practice and number of case reports

and research studies have been steadily increasing. The commonly

described clinical features of the syndrome include:

paucity of empathy;

naive, inappropriate, one-sided social interaction, little ability to

form friendships and consequent social isolation;

pedantic and monotonic speech;

poor nonverbal communication;

intense absorption in circumscribed topics such as the weather, facts

about TV stations, railway tables or maps, which are learned in rote

fashion and reflect poor understanding, conveying the impression of

eccentricity; and

clumsy and ill-coordinated movements and odd posture.

Although Asperger originally reported the condition only in boys,

reports of girls with the syndrome have now appeared. Nevertheless,

boys are significantly more likely to be affected. Although most

children with the condition function in the normal range of

intelligence, some have been reported to be mildly retarded. The

apparent onset of the condition, or at least its recognition, is

probably somewhat later than autism; this may reflect the more

preserved language and cognitive abilities. It tends to be highly

stable, and the higher intellectual skills observed suggest a better

long-term outcome than is typically observed in autism.

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Related Diagnostic Concepts

Several similar diagnostic concepts originating from adult

psychiatry, neuropsychology, neurology, and other disciplines share,

to a great degree, the phenomenological aspects of AS. For example,

Wolff and colleagues described a group of individuals with an

abnormal pattern of behavior characterized by social isolation,

rigidity of thought and habits, and an unusual style of

communication. This condition was named schizoid personality disorder

in childhood. Unfortunately, a developmental account of this concept

was not provided, making it difficult to ascertain the extent to

which the individuals described may have also exhibited autistic-like

symptomatology early on in life. More generally, the understanding of

AS as an unchanging personality trait fails to fully appreciate the

developmental aspects of the disorder which may prove to be of great

importance for differential diagnosis.

In neuropsychology, a great deal of research has been devoted to

Rourke's (1989) concept of Nonverbal Learning Disabilities syndrome

(NLD). The main contribution of this line of research has been the

attempt to delineate the implications for the child's social and

emotional development of a unique profile of neuropsychological

assets and deficits that appears to have a deleterious impact on the

person's capacity for socialization as well as on the person's

interactive and communicative styles. The neuropsychological

characteristics of individuals with the NLD profile include deficits

in tactile perception, psychomotor coordination, visual-spatial

organization, nonverbal problem-solving, and appreciation of

incongruities and humor. NLD individuals also exhibit well developed

rote verbal capacities and verbal memory skills, difficulty in

adapting to novel and complex situations, and over reliance on rote

behaviors in such situations, relative deficits in mechanical

arithmetic as compared to proficiencies in single word reading, poor

pragmatics and prosody in speech, and significant deficits in social

perception, social judgment, and social interaction skills. There are

marked deficits in the appreciation of subtle and even fairly obvious

nonverbal aspects of communication, that often result in other

person's social disdain and rejection. As a result, NLD individuals

show a marked tendency toward social withdrawal and are at risk for

development of serious mood disorders.

Many of the clinical features clustered together in NLD have also

been described in the neurological literature as a form of

Developmental Learning Disability of the Right Hemisphere (Denckla,

1983; Voeller, 1986). Children presenting with this condition have

also been shown to exhibit profound disturbances in interpretation

and expression of affect and other basic interpersonal skills.

Finally, an additional term researched in the literature, semantic-

pragmatic disorder (Bishop, 1989), has also captured aspects of NLD

and AS.

It is currently unclear whether these concepts describe different

entities or, more probably, provide different perspectives on a

heterogeneous, yet overlapping, group of individuals sharing at least

some common aspects. An important goal of current research is to seek

a convergence between the various discipline-specific accounts in

order to make use of different methodologies in the effort to

validate the behaviorally defined concept of AS. However, in order to

enhance comparability of studies, it is of great importance to

establish consensual and stringent guidelines for the diagnosis of

AS, particularly in regard to its similarities with related

conditions.

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Categorical Definition and Clinical Description

As defined in DSM-IV (the most recent Diagnostic and Statistical

Manual of the American Psychiatric Association, 1994), the tentative

criteria for AS follow the same format, and in fact overlap to some

degree, the criteria for autism. The required symptomatology is

clustered in terms of onset, social and emotional, and " restricted

interests " criteria, with the addition of two common but not

necessary characteristics involving motor deficits and isolated

special skills, respectively. A final criterion involves the

necessary exclusion of other conditions, most importantly autism or a

sub threshold (or " autistic-like " ) form of autism (Pervasive

Developmental Disorder - Not Otherwise Specified). Interestingly, the

DSM-IV definition of AS is offered having autism as its point of

reference; hence some of the criteria actually involve the absence of

abnormalities in some areas of functioning that are affected in

autism. The following table summarizes the DSM-IV definition of AS:

Qualitative impairment in social interaction, as manifested by at

least two of the following:

Marked impairment in the use of multiple nonverbal behaviors such as

eye-to-eye gaze, facial expression, body postures, and gestures to

regulate social interaction

Failure to develop peer relationships appropriate to developmental

level

A lack of spontaneous seeking to share enjoyment, interests, or

achievements with other people

Lack of social or emotional reciprocity

Restricted repetitive and stereotyped patterns of behavior,

interests, and activities, as manifested by at least one of the

following:

Encompassing preoccupation with one or more stereotyped and

restricted patterns of interest that is abnormal either in intensity

or focus

Apparently inflexible adherence to specific, nonfunctional routines

or rituals

Stereotyped and repetitive motor mannerisms

Persistent preoccupation with parts of objects

The disturbance causes clinically significant impairment in social,

occupational, or other important areas of functioning

There is no clinically significant general delay in language (e.g.,

single words used by age 2 years, communicative phrases used by age 3

years)

There is no clinically significant delay in cognitive development or

in the development of age-appropriate self-help skills, adaptive

behavior (other than in social interaction), and curiosity about the

environment in childhood

Criteria are not met for another specific Pervasive Developmental

Disorder or Schizophrenia.

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Onset criteria

In DSM-IV, the individual's history 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.

Although the onset criterion is in agreement with Asperger's account,

Wing (1981) noted the presence of deficits in the use of language for

communication, if not in more specific language skills, in some of

her case studies. It is currently uncertain whether the lack of

delays in the prescribed areas is a differential factor between AS

and autism or, alternatively, a simple reflection of the higher

developmental level associated with the usage of the term AS.

Other common descriptions of the early development of individuals

with AS include a certain precociousness in learning to talk ( " he

talked before he could walk " ), a fascination with letters and

numbers -- in fact, the young child may even be able to decode words

although with little or no understanding ( " hyperlexia " ) -- and the

establishment of attachment patterns to family members but

inappropriate approaches to peers and other persons, rather than

withdrawal or aloofness as in autism (e.g., the child may attempt to

initiate contact with other children by hugging them or screaming at

them and then puzzle at their responses). Again, these behaviors are

not uncommonly described for higher-functioning autistic children as

well, albeit much more infrequently.

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Qualitative Impairments in Reciprocal Social Interaction

Although the social criteria for AS and autism are identical, the

former condition usually involves fewer symptoms and has a generally

different presentation than does the latter. Individuals with AS are

often socially isolated but are not unaware of the presence of

others, even though their approaches 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 individuals with AS are often self-described " loners " ,

they often express a great interest in making friendships and meeting

people. These wishes are invariably thwarted by their awkward

approaches and insensitivity to other person's feelings, intentions,

and nonliteral and implied communications (e.g., signs of boredom,

haste to leave, and need for privacy). Chronically frustrated by

their repeated failures to engage others and make friendships, some

of these individuals develop symptoms of depression that may require

treatment, including medication.

In regard to the emotional aspects of social transactions,

individuals with AS may react inappropriately to, or fail to

interpret the valence of, the context of the affective interaction,

often conveying a sense of insensitivity, formality, or disregard to

the other person's emotional expressions. That notwithstanding, they

may be able to describe correctly, in a cognitive and often

formalistic fashion, other people's emotions, expected intentions and

social conventions, but are unable to act upon this knowledge in an

intuitive and spontaneous fashion, thus losing the tempo of the

interaction. Such poor intuition and lack of spontaneous adaptation

are accompanied by marked reliance on formalistic rules of behavior

and rigid social conventions. This presentation is largely

responsible for the impression of social naivete and behavioral

rigidity that is so forcefully conveyed by these individuals.

As with the majority of the behavioral aspects used to describe AS,

at least some of these characteristics are also exhibited by

individuals with higher-functioning autism, though, again, probably

to a lesser extent. More typically, autistic persons are withdrawn

and may seem to be unaware of, and disinterested in, other persons.

Individuals with AS, on the other hand, are often keen, sometimes

painfully so, to relate to others, but lack the skills to

successfully engage them.

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Qualitative Impairments in Communication

In contrast to autism, there are no symptoms in this area of

functioning In the definition of AS. Although significant

abnormalities of speech are not typical of AS, there are at least

three aspects of these individuals' communication skills which are of

clinical interest. First, though inflection and intonation may not be

as rigid and monotonic as in autism, speech may be marked by poor

prosody. For example, there may a constricted range of intonation

patterns that is used with little regard to the communicative

functioning of the utterance (assertions of fact, humorous remarks,

etc.). Second, speech may often be tangential and circumstantial,

conveying a sense of looseness of associations and incoherence. Even

though in some cases this symptom may be an indicator of a possible

thought disorder, it is often the case that the lack of coherence and

reciprocity in speech is a result of the one-sided, egocentric

conversational style (e.g., unrelenting monologues about the names,

codes, and attributes of innumerable TV stations in the country),

failure to provide the background for comments and to clearly

demarcate changes in topic, and failure to suppress the Vocal output

accompanying internal thoughts.

The third aspect typifying the communication patterns of individuals

with AS concerns the marked verbosity observed, which some authors

see as one of the most prominent differential features of the

disorder. The child or adult may talk incessantly, usually about

their favorite subject, often in complete disregard to whether the

listener might be interested, engaged, or attempting to interject a

comment, or change the subject of conversation. Despite such long-

winded monologues, the individual may never come to a point or

conclusion. Attempts by the interlocutor to elaborate on issues of

content or logic, or to shift the interchange to related topics, are

often unsuccessful.

Despite the possibility that all of these symptoms may be accounted

for in terms of significant deficits in pragmatics skills and/or lack

of insight into, and awareness of, other people's expectations, the

challenge remains to understand this phenomenon developmentally as

strategies of social adaptation.

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Restrictive, Repetitive, and Stereotyped Patterns of Behavior,

Interests, and Activities

Although in the DSM-IV definition the criteria for AS and autism are

identical, requiring the presence of at least one of the symptoms in

the list provided (see table above), it appears that the most

commonly observed symptom in this cluster refers to an encompassing

preoccupation with restricted patterns of interest. In contrast to

autism, where other symptoms in this area may be very pronounced,

individuals with AS are not commonly reported to exhibit them with

the exception of the all-absorbing preoccupation with an unusual and

circumscribed topic, about which vast amounts of factual knowledge

are acquired and all too readily demonstrated at the first

opportunity in social interaction. although the actual topic may

change from time to time (e.g., every year or two years), it may

dominate the content of social interchange as well as the activities

of individuals with AS, often immersing the whole family in the

subject for long periods of time. Even though this symptom may not be

easily recognized in childhood (because strong interests in dinosaurs

or fashionable fictional characters are so ubiquitous among young

children), it may become more salient later on as interests shift to

unusual and narrow topics. This behavior is peculiar in the sense

that often times extraordinary amounts of factual information are

learned about very circumscribed topics (e.g., snakes, names of

stars, maps, TV guides, or railway schedules).

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Motor Clumsiness

In addition to the required criteria specified above, an additional

symptom is given as an associated feature though not a required

criterion for the diagnosis of AS, namely delayed motor milestones

and presence of " motor clumsiness " . Individuals with AS 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. Although this presentation contrasts with

the pattern of motor development in autistic children, for whom the

area of motor skills is often a relative strength, it is similar in

some respects to what is observed in older autistic individuals.

Nevertheless, the commonality in later life may result from different

underlying factors, for example, psychomotor deficits in the case of

AS, and poor body image and sense of self in the case of autism. This

highlight the importance of describing this symptom in developmental

terms.

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Assessment

AS, like other pervasive developmental disorders (PDDs), involves

delays and deviant patterns of behavior in multiple areas of

functioning, that often require the input of professionals with

different areas of expertise, particularly overall developmental

functioning, neuropsychological features, and behavioral status.

Hence the clinical assessment of individuals with this disorder is

most effectively conducted by an experienced interdisciplinary team.

A few principles should be made explicit prior to a discussion of the

various areas of assessment. First, given the complexity of the

condition, importance of developmental history, and common

difficulties in securing adequate services for children and

individuals with AS, it is very important that parents are encouraged

to observe and participate in the evaluation. This guideline helps to

demystify assessment procedures, avails the parents of shared

observations that can then be clarified by the clinician, and fosters

parental understanding of the child's condition. All of these can

then help the parents evaluate the programs of intervention offered

in their community.

Second, evaluation findings should be translated into a single

coherent view of the child: easily understood, detailed, concrete,

and realistic recommendations should be provided. When writing their

reports, professionals should strive to express the implications of

their findings to the patient's day-to-day adaptation, learning, and

vocational training.

Third, the lack of awareness of many professionals and officials of

the disorder, its features, and associated disabilities often

necessitates direct and continuous contact on the part of the

evaluators with the various professionals securing and implementing

the recommended interventions. This is particularly important in the

case of AS, as most of these individuals have average levels of Full

Scale IQ, and are often not thought of as in need for special

programming. Conversely, as AS becomes a more well-known diagnostic

label, there is reason to believe that it is becoming a fashionable

concept used in an often unwarranted fashion by practitioners who

intend to convey only that their client is currently experiencing

difficulties in social interaction and in peer relationships. 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. Therefore, parents should be briefed

about the present unsatisfactory state of knowledge about AS and the

common confusions of use and abuse of the disorder currently

prevailing in the mental health community. Ample opportunity should

be given to clarify misconceptions and establish a consensus about

the patient's abilities and disabilities, which should not be simply

assumed under the use of the diagnostic label.

In the majority of cases, a comprehensive assessment will involve the

following components: history, psychological assessment,

communication and psychiatric assessments, further consultation if

needed, parental conferences, and recommendations.

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History

A careful history should be obtained, including information related

to pregnancy and neonatal period, early development and

characteristics of development, and medical and family history. A

review of previous records including previous evaluations should be

performed and the information incorporated and results compared in

order to obtain a sense of course of development. Additionally,

several other specific areas should be directly examined because of

their importance in the diagnosis of AS. These include a careful

history of onset/recognition of the problems, development of motor

skills, language patterns, and areas of special interest (e.g.,

favorite occupations, unusual skills, collections). Particular

emphasis should be placed on social development, including past and

present problems in social interaction, patterns of attachment of

family members, development of friendships, self-concept, emotional

development, and mood presentation.

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Psychological Assessment

This component aims at establishing the overall level of intellectual

functioning, profiles of strengths and weaknesses, and style of

learning. The specific areas to be examined and measured include

neuropsychological functioning (e.g., motor and psychomotor skills,

memory, executive functions, problem-solving, concept formation,

visual-perceptual skills), adaptive functioning (degree of self-

sufficiency in real-life situations), academic achievement

(performance in school-like subjects), and personality assessment

(e.g., common preoccupations, compensatory strategies of adaptation,

mood presentation).

The neuropsychological assessment of individuals with AS involves

certain procedures of specific interest to this population. Whether

or not a Verbal-Performance IQ discrepancy is obtained in

intelligence testing, it is advisable to conduct a fairly

comprehensive neuropsychological assessment including measures of

motor skills (coordination of the large muscles as well as

manipulative skills and visual-motor coordination, visual-perceptual

skills) gestalt perception, spatial orientation, parts-whole

relationships, visual memory, facial recognition, concept formation

(both verbal and nonverbal), and executive functions. A recommended

protocol would include the measures used in the assessment of

children with Nonverbal Learning Disabilities (Rourke, 1989).

Particular attention should be given to demonstrated or potential

compensatory strategies: for example, individuals with significant

visual-spatial deficits may translate the task or mediate their

responses by means of verbal strategies or verbal guidance. Such

strategies may be important for educational programming.

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Communication Assessment

The communication assessment aims to obtain both quantitative and

qualitative information regarding the various aspects of the child's

communication skills. It should go beyond the testing of speech and

formal language (e.g., articulation, vocabulary, sentence

construction and comprehension), which are often areas of strength.

The assessment should examine nonverbal forms of communication (e.g.,

gaze, gestures), nonliteral language (e.g., metaphor, irony,

absurdities, and humor), prosody of speech (melody, volume, stress

and pitch), pragmatics (e.g., turn-taking, sensitivity to cues

provided by the interlocutor, adherence to typical rules of

conversation), and content, coherence, and contingency of

conversation; these areas are typically one of the major difficulties

for individuals with AS. Particular attention should be given to

perseveration on circumscribed topics and social reciprocity.

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Psychiatric Examination

The psychiatric examination should include observations of the child

during more and less structured periods: for example, while

interacting with parents and while engaged in assessment by other

members of the evaluation team. Specific areas for observation and

inquiry include the patient's patterns of special interest and

leisure time, social and affective presentation, quality of

attachment to family members, development of peer relationships and

friendships, capacities for self-awareness, perspective-taking and

level of insight into social and behavioral problems, typical

reactions in novel situations, and ability to intuit other person's

feelings and infer other person's intentions and beliefs. Problem

behaviors that are likely to interfere with remedial programming

should be noted (e.g., marked aggression). The patient's ability to

understand ambiguous nonliteral communications (particularly teasing

and sarcasm) should be examined (as, often, misunderstandings of such

communications may elicit aggressive behaviors). Other areas of

observation involve the presence of obsessions or compulsions,

depression, anxiety and panic attacks, and coherence of hought.