HELP FOR PARENTS OF CHILDREN WITH ASPERGER'S & HIGH-FUNCTIONING AUTISM

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Aspergers Assessment, Diagnosis, and Intervention

Aspergers (AS) is a severe developmental disorder characterized by major difficulties in social interaction, and restricted and usual patterns of interest and behavior. There are many similarities with autism without mental retardation (or “Higher Functioning Autism”), and the issue of whether Aspergers 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 Aspergers.

The lack of a consensual definition led to a great deal of confusion, as researchers could not interpret other researcher’s findings. Clinicians felt free to use the label based on their own interpretations or misinterpretations of what Aspergers “really” meant, and moms and dads 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 were not aware of the conditions, insurance carriers could not reimburse services provided on the basis of this “unofficial” diagnosis and there was no published information providing moms and dads and clinicians alike with guidelines on the meaning and implications of Aspergers, including what should the diagnostic evaluation consist of and what forms of treatment and interventions were warranted.

This situation has changed somewhat since Aspergers was made “official” in DSM-IV (APA, 1994), following a large international field trial involving over a thousand kids and adolescents with autism and related disorders (Volkmer et al., 1994). The field trials revealed some evidence justifying the inclusion of Aspergers 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 Aspergers 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 Aspergers, in regard to scientific research as well as in regard to service provision, is only beginning. Moms and dads 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 person’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.

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 Aspergers 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:

• Clumsy and ill-coordinated movements and odd posture.
• intense absorption in circumscribed topics such as weather, facts about TV stations, railway tables or maps, which are learned in rote fashion and reflect poor understanding, conveying the impression of eccentricity
• naïve, inappropriate, one-sided social interaction, little ability to form friendships and consequent social isolation
• paucity of empathy
• pedantic and monotonic speech
• poor non-verbal communication

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 kids with the condition function in the normal range of intelligence, some have been reported as 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.

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 ASPERGERS. For example, Wolff and colleagues described a group of people with an abnormal pattern 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 his concept was not provided, making it difficult to ascertain the extent to which the people described may have also exhibited autistic-like symptomatology early on in life. More generally, the understanding of ASPERGERS 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 youngster’s social and emotional development of a unique profile of neuropsychological assets and deficits that appear 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 people with the NLD profile include deficits in tactile perception, psychomotor coordination, visual-spatial organization, nonverbal problem solving, and appreciation of incongruities and humor. NLD people 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 social disdain and rejection. As a result, NLD people 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). Kids 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 ASPERGERS.

It is currently unclear whether these concepts describe different entities or, more probably, provide different perspectives on a heterogeneous, yet overlapping, group of people 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 ASPERGERS. However, in order to enhance comparability of studies, it is of great importance to establish consensual and stringent guidelines for the diagnosis of ASPERGERS, particularly in regard to its similarities with related conditions.

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 ASPERGERS 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 ASPERGERS 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 summarized the DSM-IV definition of ASPERGERS:

DSM-IV-TR definition of Aspergers (APA, 1994):

A. Qualitative impairment in social interaction, as manifested by at least two of the following:

1. a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people (e.g., by a lack of showing, bringing, or pointing out objects of interest to other people.
2. failure to develop peer relationships appropriate to developmental level
3. lack of social or emotional reciprocity
4. 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

B. Restricted repetitive and stereotyped patterns of behavior, interests and activities, as manifested by at least one of the following:

1. apparently inflexible adherence to specific, nonfunctional routines or rituals
2. encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus
3. persistent preoccupation with parts or objects
4. stereotyped and repetitive motor mannerisms (e.g., hand or finger flapping or twisting, or complex whole-body movements)

C. The disturbance causes clinically significant impairment in social, occupational, or other important areas of functioning.

D. 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).

E. 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.

F. Criteria are not met for another specific Pervasive Developmental Disorder or Schizophrenia

Onset Criteria—

In DSM-IV, the person’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 kids 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 ASPERGERS and autism or, alternatively, a simple reflection of the higher developmental level associated with the usage of the term ASPERGERS.

Other common descriptions of the early development of people with ASPERGERS include a certain precociousness in learning to talk (“he talked before he could walk”), a fascination with letters and numbers-in fact, the young youngster may even be able to decode words although with little or no understanding (“hyperplexia”)-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 youngster may attempt to initiate contact with other kids by hugging them or screaming at them and then puzzle at their responses). Again, these behaviors are not uncommonly described for higher-functioning autistic kids as well, albeit much more infrequently.

Qualitative Impairments in Reciprocal Social Interaction—

Although the social criteria for ASPERGERS and autism are identical, the former condition usually involves fewer symptoms and has a generally different presentation than does the latter. People with ASPERGERS 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 people with ASPERGERS are often socially isolated but are not unaware of the presence of others, even though their approaches may be inappropriate and peculiar. Also, although people with ASPERGERS are often self-described “loners”, they often express a great interest in making friendships and meeting people.

These wishes are invariable 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 people develop symptoms of depression that may require treatment, including medication.

In regard to the emotional aspects of social transactions, people with ASPERGERS 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 naiveté and behavioral rigidity that is so forcefully conveyed by these people.

As with the majority of the behavioral aspects used to describe ASPERGERS, at least some of these characteristics are also exhibited by people 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. People with ASPERGERS, on the other hand, are often keen, sometimes painfully so, to relate to others, but lack the skills to successfully engage them.

Qualitative Impairment in Communication—

In contrast to autism, there are no symptoms in this area of functioning in the definition of ASPERGERS. Although significant abnormalities of speech are not typical of ASPERGERS, 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 be 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 often is 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 people with ASPERGERS concerns the marked verbosity observed, which some authors see as one of the most prominent differential features of the disorder. The youngster or grown-up 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 person 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.

Restrictive, repetitive, and stereotyped patterns of behavior, interests, and activities—

Although in the DSM-IV definition the criteria for ASPERGERS 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, people with ASPERGERS 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 people with ASPERGERS, 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 kids), 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).

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 ASPERGERS, namely delayed motor milestones and presence of “motor clumsiness”. People with ASPERGERS may have a history of delayed acquisition of motor skills such as pedaling a bike, catching a ball, opening jars, climbing on “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 kids, 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 people. Nevertheless, the commonality in later life may result from different underlying factors, for example, psychomotor deficits in the case of ASPERGERS, and poor body image and sense of self in the case of autism. This highlights the importance of describing this symptom in developmental terms.

Assessment—

ASPERGERS, like other pervasive developmental disorders (PDD’s), 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 an experienced interdisciplinary team most effectively conducts the clinical assessment of people with this disorder.

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 kids and people with ASPERGERS, it is very important that moms and dads are encouraged to observe and participate in the evaluation. This guideline helps to demystify assessment procedures, avails the moms and dads of shared observations that can then be clarified by the clinician, and fosters parental understanding of the youngster’s condition. All of these can then help the moms and dads evaluate the programs of intervention offered in their community.

Second, evaluation findings should be translated into a single coherent view of the youngster: easily understood, detailed, concrete, and elastic 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 ASPERGERS, as most of these people have average levels of Full Scale IQ, and are often thought of as in need for special programming.

Conversely, as Aspergers 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, moms and dads should be briefed about the present unsatisfactory state of knowledge about ASPERGERS 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.

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 ASPERGERS.

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, and 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.

The Aspergers Comprehensive Handbook

4 comments:

Anonymous said...

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Anonymous said...

I am a female with aspergers and I know a few other girls that have it..... its not really that we don't have it its that it is generally harder to see in females than males because we hide it better

Anonymous said...

Females have a tendency to show, and identify with their emotions more easily or even 'bad' behavior in girls is often dismissed as 'female' drama or hormonal episodes. Aspergers may be overlooked as an issue by many parents thinking their daughter is just being a difficult drama princess.

Anonymous said...

There is also the predisposition to treat girls differently than boys. If a girl hits another student [specifically a boy] in school for instance, the reaction is very different than had it been the other way around.

My child has been rejected by his peers, ridiculed and bullied !!!

Social rejection has devastating effects in many areas of functioning. Because the Aspergers child tends to internalize how others treat him, rejection damages self-esteem and often causes anxiety and depression. As the child feels worse about himself and becomes more anxious and depressed – he performs worse, socially and intellectually. Thus, the best treatment for Aspergers children and teens is, without a doubt, “social skills training.”

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How to Prevent Meltdowns in Aspergers Children

Meltdowns are not a pretty sight. They are somewhat like overblown temper tantrums, but unlike tantrums, meltdowns can last anywhere from ten minutes to over an hour. When it starts, the Asperger's child is totally out-of-control. When it ends, both you and the Asperger’s child are totally exhausted. But... don’t breathe a sigh of relief yet. At the least provocation, for the remainder of that day -- and sometimes into the next - the meltdown can return in full force.

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Although Aspergers is at the milder end of the autism spectrum, the challenges parents face when disciplining a teenager with Aspergers are more difficult than they would be with an average teen. Complicated by defiant behavior, the Aspergers teen is at risk for even greater difficulties on multiple levels – unless the parents’ disciplinary techniques are tailored to their child's special needs.

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Aspergers Children “Block-Out” Their Emotions

Parenting children with Aspergers and HFA can be a daunting task. In layman’s terms, Aspergers is a developmental disability that affects the way children develop and understand the world around them, and is directly linked to their senses and sensory processing. This means they often use certain behaviors to block out their emotions or response to pain.

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Older Teens and Young Adult Children With Aspergers Still Living At Home

Your older teenager or young “adult child” isn’t sure what to do, and he is asking you for money every few days. How do you cut the purse strings and teach him to be independent? Parents of teens with Aspergers face many problems that other parents do not. Time is running out for teaching their adolescent how to become an independent adult. As one mother put it, "There's so little time, yet so much left to do."

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Living with an Aspergers Spouse/Partner

Research reveals that the divorce rate for people with Aspergers is around 80%. Why so high!? The answer may be found in how the symptoms of Aspergers affect intimate relationships. People with Aspergers often find it difficult to understand others and express themselves. They may seem to lose interest in people over time, appear aloof, and are often mistaken as self-centered, vain individuals.

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Online Parent Coaching for Parents of Asperger's Children

If you’re the parent of a child with Aspergers or High-Functioning Autism, you know it can be a struggle from time to time. Your child may be experiencing: obsessive routines; problems coping in social situations; intense tantrums and meltdowns; over-sensitivity to sounds, tastes, smells and sights; preoccupation with one subject of interest; and being overwhelmed by even the smallest of changes. The hardest part is you feel like you’ll never actually get to know your child and how he/she views the world.

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