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

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Outcome Research in Aspergers

Outcome studies in Asperger Syndrome (AS), although limited in number, can be far-reaching in impact. Results yielded from this kind of investigation hold value for all of those involved with the youngster with ASPERGERS, whether in the role of mother/father, clinician, or researcher. When the core features have been recognized and an appropriate diagnosis of ASPERGERS has been made by the clinician, moms and dads may receive this information with a mixture of relief (this classification closely captures many aspects of their experience of their youngster) and distress (clearly this is a fairly severe disorder). More than this however, they are burdened with a singular question, often stated: “We recognize that each youngster is different, but what can we expect for our son's future?”

Adding to the clinician's own experience, outcome studies may provide useful findings with regard to positive prognosticators and long-term adaptation to everyday life. This information may assist the family in forming realistic expectations and setting meaningful goals, and also in planning for the future. From a broader research perspective, the contribution is less immediate but of equal importance. There is continued debate whether ASPERGERS and high functioning autism (HFA) represent distinct disorders, which increases the need to better understand the developmental trajectory and outcome of both disorders. Differences in outcome may provide one of the soundest justifications for a differentiation between ASPERGERS and autism.

There are few studies to examine outcome in ASPERGERS specifically. This may not be surprising in light of the relative newness of this diagnostic entity and the ongoing uncertainty of its nosologic status. The discussion is broadened when consideration is given to the research on HIGH FUNCTIONING AUTISM. In this article, findings from the outcome literature in autism, ASPERGERS, and related disorders are presented. The discussion of outcome principally focuses on life adaptation, but also considers outcome in ASPERGERS in relationship to other diagnostic groups and across time. The current research in this area is neither substantial nor systematic. Thus, in this examination of the literature, the goal is to highlight salient findings, but also to put forward questions that might direct meaningful research in this area for the future, and to consider implications for treatment.

Methodologic issues—

It is instructive first to consider the methodologic issues that affect any interpretation of the results from this literature. The number of studies is limited and sample sizes are often small; in addition, the subject population is heterogeneous and outcome measures are variable. There are differences in the way subjects are selected (e.g., clinic-referred samples who were identified retrospectively versus those who presented at enrollment and clinic- versus population-based samples). Further, differences may exist across studies with regard to accessible supports (e.g., relative to socioeconomic status or geographic location).

An especially important caveat when comparing studies involving high functioning people concerns the diagnostic criteria used, particularly with regard to ASPERGERS. Researchers use varied criteria for ASPERGERS, and before ICD-10 and DSM-IV, high functioning samples likely included HIGH FUNCTIONING AUTISM and ASPERGERS subjects. Current samples of adults with ASPERGERS may not be representative of the larger group, and when identified retrospectively, may be influenced by earlier diagnostic uncertainty. That is, it can be expected that some adults in the current psychiatric population are not appropriately identified with ASPERGERS, particularly if diagnosed as kids. Tantam reports that of the adolescents and adults referred to him for evaluation of ASPERGERS, 9% held a previous diagnosis of schizophrenia and 14% had been diagnosed with obsessive-compulsive disorder.

Representing a more general problem in outcome research is the lack of measures appropriate for use in a longitudinal study. Different measures often need to be used at different points in time; that is, initial measures may not be usable at follow-up because they do not extend to an older age group. There are few measures that cross the life span, and this is particularly relevant when very young kids are initially assessed. Although the same behavior may be of interest over time, it is likely to increase in complexity and require a measure that can accommodate a broader range of related skills. Age at initial assessment, developmental level, and measure selected have been associated with the stability and predictability of intelligence scores in young autistic people. Finally, outcome studies are ideally designed to be prospective, longitudinal, and population-based. In the current literature, most studies are longitudinal in nature and retrospective in design; few are population-based.

The methodologic differences between the studies in the autism and ASPERGERS outcome literature are wide-ranging and affect the comparability and the measure of generalization of the findings. However, the data are important to consider, given their clinical usefulness, viewing these as beginning findings, and research consequence, revealing needed directions for future investigations.

Outcome in autism—

Reports on the long-term outcome of autism emerged as early as the 1950s and 1960s, and were marked by many of the methodologic vulnerabilities described earlier [6]. Two particular findings documented in early studies [7], [8], [9], [10], [11], however, have proved to be fundamental and enduring: (1) Most people with autism remain autistic as adolescents or adults; diagnosis is generally stable, whereas outcome is more varied. A poor or very poor outcome is observed in three quarters of autistic people, but a fair to good outcome (e.g., acceptable functioning in social, work, or school arenas) is noted in at least one quarter [12], [13], and (2) IQ and language development, specifically the presence of meaningful speech before 6 years of age, are the strongest predictors of outcome in autism [7], [13], [14], [15].

Later studies have increasingly focused on people with autism who are high-functioning [16], [17], [18], [19], [20]; they also yield accounts of successful and limited outcomes. Identifying the factors that influence long-term functioning in HIGH FUNCTIONING AUTISM is of central importance as it is especially challenging to reliably predict outcome in those people with higher IQs [5]. Although it can be reasonably expected that a person with autism who is severely mentally retarded will not be capable of functioning independently, the range of outcomes is wider for the one quarter of people with autism who have normal or near normal intelligence.

In the next section, results from four follow-up studies are summarized with reference to outcome variables, such as occupational status, level of independence, and social functioning. Each of the studies used clinic-based samples but varied on other dimensions. Rumsey et al [20] reported on the progress of 14 men with autism, 7 of whom had been diagnosed by Kanner and 9 of whom were high functioning (VIQ: 82–117 and PIQ: 81–126). The subjects ranged in age from 18–39 years. The study conducted by Szatmari et al [19] identified retrospectively and followed 45 kids functioning in the normal range of intelligence, who were seen before 5 years of age. Initial diagnoses included autism, childhood psychosis, or schizophrenia. Of this group, 16 were willing to participate and at follow-up had a mean age of 26 years and average IQ greater than 90.

Venter, Lord, and Schopler [18] examined predictors of outcome for high functioning kids with autism. The sample was large (n=58), with a higher than usual proportion of females (23/58). The kids were followed for an average of 8 years, with a mean age at follow-up of approximately 15 years (age range: 10–37 years) and mean FSIQ score close to 80. Most recently, Mawhood, Howlin, and Rutter [16], [17] conducted a comparative study of adult outcome in a group of young men with autism and a group with developmental receptive language disorders (n=19 for both groups). The people were first assessed at 7–8 years of age and matched on nonverbal IQ and expressive ability. At follow-up, the mean age of the group was 23–24 years, and the mean IQ scores for the autism group were approximately 73 for VIQ and 82 for PIQ.

School placement—

Most people with HIGH FUNCTIONING AUTISM in these studies completed high school, receiving some assistance, and a minority went on to higher levels of education. Of the nine HIGH FUNCTIONING AUTISM men in the Rumsey et al study, eight completed high school and two went on to complete one year or more of junior college. One half of the group followed by Szatmari et al received special education and the remaining half attended college or university, with 6 of 16 people obtaining a degree or equivalent qualification. In Mawhood and Howlin's sample, five kids had at some time participated in a home-based program, one half of the group were placed in special classrooms for kids with autism, two were in mainstream classrooms through to secondary school, and the remaining seven kids were placed in settings for kids with severe learning disabilities. Of note, placement did not seem to be directly related to IQ; the most cognitively able kids were represented in all three settings.

The sample described in the Venter et al study was young and most kids were still enrolled in school. For adult subjects who were not in school at follow-up, placement was identified in terms of their last year of fulltime schooling. Approximately one half of this HIGH FUNCTIONING AUTISM sample (28/58) were placed in special education classrooms, 17 were enrolled in technical or vocational schools or were placed in regular classrooms with a fulltime teaching assistant, and the remaining 13 were in a mainstream classroom and receiving little or no help. The kids who were fully mainstreamed were more likely to have higher verbal IQ and other language scores than the kids in self-contained special education classrooms. School placement was also influenced by geography; this sample of kids came from two distinct geographic locations (North Carolina and Alberta). Although most self-contained classrooms were from North Carolina, the regular classrooms with fulltime aides came from Alberta. In light of the latter finding and differences in the predictive value of IQ in the two studies, it is noted that Mawhood and Howlin's sample represents kids from the United Kingdom.

Employment—

The rates of gainful employment are lower than might be predicted for people functioning within the normal range of intelligence. Typically, half of the sample had been employed at some time, with the exception of the sample described by Mawhood, Howlin, and Rutter [16], [17]. Most (14/19) of these subjects had never been engaged in paid employment; one person had a paid job as a laboratory technician, two worked in a voluntary capacity or on a job program, and two people were enrolled in fulltime education.

Four of the nine men in Rumsey’s study were competitively employed (janitor, key punch operator, library assistant, and cab driver); these jobs were described to be routine and involve limited decision making or social interaction (with the exception of the cab driver). One person was unemployed and the remaining men were participating in training programs. Inappropriate behaviors were described to influence job tenure, and moms and dads and agencies were seen to play a major role in job attainment.

Of the 16 people followed by Szatmari et al [19], only two were unemployed, six were in regular fulltime employment, and one worked in a family business; four were in sheltered workshop schemes and three were still in school. The jobs included librarian, physics tutor, salesmen, factory worker, and library technician. There seemed to be a positive relationship between IQ and gainful employment.

A similar distribution of employment outcome was observed in the study conducted by Venter et al. Six people were competitively employed and two more had been employed for at least 6 months; 13 were in sheltered or supervised employment settings or in special school programs, and three people were unemployed and not in school. Most HIGH FUNCTIONING AUTISM adults were in low-level jobs in service industries, with the exception of the one university graduate who had been employed in his chosen profession but was currently working as a bartender. All of the subjects who were in paid jobs were male; in addition, measures of verbal skills and achievement, particularly verbal IQ and reading comprehension above the median, distinguished this group, but not nonverbal IQ, severity of social deviance as measured by the ADI, or Vineland scores. Less than half of the successfully employed group obtained a Vineland adaptive behavior composite score that was above the median.

Living arrangements—

Few people were described to be living independently in these studies. Among the high functioning subjects identified by Rumsey et al, six of the nine men resided at home and three men were living in an apartment setting, with two receiving some minimal supervision. Two of the 22 adults in Venter's study lived independently, and four resided in apartments with minimal supervision. Most subjects in the study conducted by Mawhood and Howlin showed low levels of independent functioning and self care skills, which was reflected in their living situation. Six people lived with their moms and dads, nine were placed in a residential facility, and only three were living independently or semi-independently. In contrast, the outcome was more positive in the Szatmari et al study. Ten of 16 people were living with their moms and dads, but 3 were described to be functioning on their own. One subject lived in a group home and the remaining five lived independently.

Relationships—

With the exception of one case [19], none of the autistic people in any of these studies was married. The men described by Rumsey et al continued to show significant social impairments, including aloof and odd or inappropriate behaviors, and only one man reported a current friendship. Several people interacted socially in the context of school clubs, religious groups, or community events, but these relationships were maintained only within the structures of these organizations. Similarly, one third of the subjects in Mawhood and Howlin's study were noted to have acquaintances in arranged social groups who were not met otherwise, on the subject's own initiative. Three people were described to have one or more friends their own age, and nine had no particular friends with whom activities or interests were shared. Only one subject had a serious relationship with a member of the opposite sex, whereas approximately one quarter of the people in the Szatmari study were reported to have dated or had long-term relationships.

Predictors of outcome—

One study in particular was designed to examine predictors of outcome in HIGH FUNCTIONING AUTISM [18]. Early and current predictor variables included standard verbal and nonverbal measures and ADI scores; academic achievement and social adaptive behavior were selected as outcome variables. Overall, measures of language ability were the most powerful predictors of achievement and adaptive functioning. In particular, the presence of communicative speech before 5 years of age, speech, and current verbal IQ were the most consistent variables in predicting outcome. Although 80% of the variance for the aggregate achievement scores was accounted for by current predictors, only half of the variance of the Vineland adaptive behavior scores was predicted. Story comprehension was one of the strongest current predictors of adaptive functioning. Nonverbal measures were not useful current predictors, although early nonverbal IQ scores showed a consistent and unique relationship with the outcome measures.

Howlin et al [17] also found that early language skills were significantly related to social competence; further, a strong positive association between current verbal IQ and friendship and social ratings was identified in the adult autism group. This pattern of associations was not observed in the language group, however, despite many qualitative similarities in the social and adaptive outcomes of the two groups in this study.

Summary—

The outcome for people with HIGH FUNCTIONING AUTISM is varied but generally much lower than would be expected on the basis of intellectual functioning. Most even cognitively able adult persons with autism live at home or in a supervised facility and occupy lower level jobs or are unable to gain competitive employment. They may engage socially in a structured context but do not establish person friendships and do not marry. This discrepancy between cognitive ability and social adaptive functioning is at the heart of autism and is forcefully reflected in quantitative discrepancies in IQ and the Vineland composite. Vineland scores for the HIGH FUNCTIONING AUTISM subjects in the current studies were typically low, and at least one full standard deviation, and often more than two, below IQ levels. The sample described by Szatmari was unique in this regard; several subjects performed above expectations on the Vineland. This sample also showed a level of adaptation with regard to employment, relationships, and independent living, however, that was elevated relative to the other studies.

Factors influencing these results include differences in subject ascertainment, including higher socioeconomic status (SES) and greater access to resources. In each study, at least 15%–25% of the sample showed a fair or even good outcome. When comparisons are made with earlier studies (e.g., pre- versus post-1980s), there is also evidence of improvement in the prospects for people with autism [2]. Higher achievement scores in recent samples [18] versus those from 2 decades before [7] may signify progress from the availability of continuous structured educational programs [18]. Finally, although the diagnosis of autism typically remains stable, people can be expected to show some age-related gains in cognitive, language, and social functioning.

Outcome in Aspergers—

Asperger depicted a positive outcome in his initial accounts of his patients, particularly for those who were able to use their special talents or interests to gain employment and integrate socially [21]. In the years to follow, Asperger saw as many as 200 patients with the syndrome and his views were more tempered. The clinical picture was described to be stable, although improvements in functioning occurred through maturational processes. Asperger believed that people with this syndrome were highly intelligent and gave accounts of those who were successful in their achievements in later life, holding high-ranking positions or professions (e.g., professor of astronomy, chemist, and mathematician). A more positive outcome for his group was viewed to be an important distinction between this disorder and Kanner's autism. Anecdotal reports and research offer some support for these views.

In Wing's report [22], 34 cases were examined, and of these, 19 showed a clinical presentation similar to Aspergers account and 15 showed a consistent current presentation but did not have all of the characteristics of onset pattern and early history. Wing noted that the degree of adjustment in this group seemed to be related to skill set and temperament, particularly a special ability that is relevant to paid employment, good self care skills, and a placid nature. Approximately one half of Wing's sample was over 16 years of age; among these older people, 9 had left school or further education, of whom 3 were employed, 3 had been previously employed but had lost their jobs, and 3 had not obtained work. Most people (13/18) in this older group presented with a psychiatric illness, including affective disorders and psychotic or bizarre behavior that was not readily classified. Two had attempted suicide and an additional person showed suicidal ideation. Comorbid conditions were high in this group and should be viewed in the context of subject ascertainment, as most of these cases were clinic referred. In addition, adolescence is identified as an especially difficult time for persons with Aspergers, marked by increasing self-awareness and social isolation. Anxiety and depression seem to be particularly strong in these years and into early adulthood.

In the next section, consideration is given to three recent studies specifically examining outcome in ASPERGERS. The first of these studies followed the progress of a clinic-referred sample of 46 kids with autism and 20 kids with ASPERGERS 2 years after initial assessment and diagnosis [23]. The results provide information about the course and continuity of symptoms in ASPERGERS and HIGH FUNCTIONING AUTISM, and the authors comment on the developmental trajectory of these two disorders. The other two reports describe the social and adaptive functioning of 20 male adolescents with ASPERGERS and compare the outcome in this group with the outcome of adolescents and young adults with HIGH FUNCTIONING AUTISM and conduct disorder (CD) [24], [25].

Follow-up study—

In the study conducted by Szatmari et al [23], kids with autism and Aspergers were first assessed and identified at 4–6 years of age and were included if they had either a Leiter IQ greater than 68 or Standard-Binet IQ greater than 70. The criteria used for a diagnosis of ASPERGERS were consistent with but not identical to those of DSM-IV and ICD-10: diagnosis of ASPERGERS was given precedence over a diagnosis of autism, and five of the kids did not meet ADI cutoff for autism in the domain of impairments in social reciprocity. The primary outcome variables were social competence, as measured by the Vineland Socialization domain, and number of autistic features, obtained from the Autism Behavior Checklist (ABC). A secondary set of variables consisted of standardized measures of language, visual spatial, and motor skills.

The results of this study support the notion that kids with ASPERGERS, although impaired, are less severely affected than even higher functioning people with autism in core domains. At follow-up, the kids with ASPERGERS obtained a mean score on the Vineland Socialization scale that was almost one standard deviation higher than the score obtained by the kids with autism. For both groups, however, performance was well below the national mean (close to two standard deviations for the ASPERGERS group). On the Autism Behavior Checklist, kids with ASPERGERS showed fewer total autistic symptoms and also outperformed kids with autism on the Communication scale of the Vineland and formal language measures. No differences were obtained on the measures of visual motor and visual spatial skills.

The differences between the two groups in this study were meaningful and stable. Differences in adaptive and behavioral functioning at follow-up were a reflection of initial variation at baseline and outcome scores were predicted by diagnosis, even when controlling for differences in performance on IQ and language measures. The two groups seemed to exhibit a parallel developmental trajectory on these measures.

Follow-up scores on the language measures, however, were better predicted by initial verbal abilities than by clinical distinction. As part of an exploratory analysis, kids with autism were divided into two language groups, fluent and non-fluent, according to whether they had attained the same level of measured language fluency at follow-up as shown by kids with ASPERGERS at the beginning of the study. On comparison, the outcome of the fluent autistic group was indistinct from the initial ASPERGERS group on ABC and Vineland Socialization scale scores. These preliminary results were interpreted to suggest that both groups follow similar developmental pathways and that position along this pathway is determined by language fluency. This proposal will need to be tested further, as systematic research is needed to obtain more data on the complex set of relationships between language, behavioral, and social functioning in ASPERGERS and autism.

Comparative outcome—

The relative outcome of a group of adolescents with ASPERGERS (n=20) and CD (n=20) were compared in a study conducted by Green et al [25]. Evaluations were made using standardized interviewer rated assessments of functioning (Social and Emotional functioning interview), based on mother/father and self report. The ASPERGERS group was most strongly differentiated from the CD adolescents in two domains, their capacity for independent functioning and capacity for forming relationships. Only 50% of the ASPERGERS group was independent in basic self care skills (versus all but one person in the CD group) and only one ASPERGERS subject was able to fully organize his daily routine. Independence skills were not correlated with IQ, but did show an association with age in the ASPERGERS group; a positive aspect of their outcome was that skills continued to be gained through adolescence.

Although most moms and dads of kids in both groups indicated the presence of significant social difficulties, only the ASPERGERS group showed a profound lack of ability to establish and maintain friendships. No subject in the ASPERGERS group was judged to have ever had a friendship of normal quality (e.g., sharing of activities and feelings) and none had a girlfriend. Complete lack of friendship was rarely identified in the CD group; most of these adolescents also had a girlfriend at one time and reported some experiences of intimacy (e.g., kissing or hugging). The groups did not differ in their conceptual understanding of friendship, loneliness, or marriage, nor did they differ in reported feelings of love or sexual feelings; however, the ASPERGERS group disproportionately showed deficits in their practical functioning and day-to-day behavior.

Special education services were used at some time by most people in both groups, but a larger percentage of the adolescents with ASPERGERS were in a mainstream classroom at present (50% compared with 15%). One of the people with ASPERGERS was in college. All of the young men either were living at home or in a residential facility. None among the ASPERGERS group had ever held a part-time or casual job, whereas 11 of the CD adolescents had done so. Both groups showed a strong need for mental health services and the level of psychiatric comorbidity was high in the ASPERGERS group, including generalized anxiety disorder, dysthymia, and OCD.

The ASPERGERS group also showed a higher number of inpatient stays (40% versus 15%), but a larger number of CD adolescents had a forensic history (65% versus 10%). Although there are some reports of an association with violence or criminal behavior in ASPERGERS [3], [26], [27], a systematic review of the literature did not find support for increased behaviors of this nature in ASPERGERS [28]. Taken along with the current results, there is more evidence to suggest that kids with ASPERGERS occupy the role of victim rather than victimizer [1], [29].

In a second report, these same adolescents with ASPERGERS and CD were compared to a group of adolescents and young adults with HIGH FUNCTIONING AUTISM (n=13) [24]. The HIGH FUNCTIONING AUTISM group was significantly older and lower in full scale IQ than the other two groups; there were no differences in age or IQ between the ASPERGERS and CD groups. Subjects with ASPERGERS met ICD-10 clinical criteria for the disorder; the main criterion differentiating the ASPERGERS and HIGH FUNCTIONING AUTISM groups was the presence of phrase speech by the age of 3 years. The groups were compared on social competence, communication, and behavioral functioning, based on past and current report using the ADI and current observation using the ADOS.

The three groups in this study showed significantly different patterns of early impairment in core domains. The HIGH FUNCTIONING AUTISM group obtained the highest total severity scores in each of the ADI domains, the CD group obtained the lowest total scores, and the ASPERGERS group was intermediate in social competence, communication, and behavioral functioning. The pattern of current impairments on the ADI was somewhat different; the CD group still obtained the lowest total scores in each domain, but the differences between the HIGH FUNCTIONING AUTISM and ASPERGERS group were insignificant. Observed impairments on the ADOS also revealed similar levels of severity for the HIGH FUNCTIONING AUTISM and ASPERGERS groups in each domain, and significantly greater abnormality relative to the CD adolescents. An analysis of individual items also yielded few differences.

On the ADI, adolescents with ASPERGERS were less likely to have reduced social talk and to display rocking behaviors, and more likely to show abnormalities in gross motor coordination compared with those with HIGH FUNCTIONING AUTISM. Observations based on the ADOS indicated that the ASPERGERS group had better conversation skills but more inattentive behaviors.

Despite similar levels of severity of impairment in later outcome between the HIGH FUNCTIONING AUTISM and ASPERGERS groups, early access to services was likely to be unequal. People with ASPERGERS were diagnosed later in development, always after 5 years of age, and at least 40% were identified at 10 years of age or later. Most of the ASPERGERS group were in mainstream classrooms and had had multiple professional contacts and a variety of diagnoses before ASPERGERS. These findings raise concerns about expectations for people with ASPERGERS and appropriate management and support for this group.

Based on their findings in a younger group of HIGH FUNCTIONING AUTISM and ASPERGERS subjects, Szatmari et al [19] suggested that differences in ASPERGERS and HIGH FUNCTIONING AUTISM may represent largely a matter of timing. Initially, the two groups follow separate but parallel developmental trajectories; later some kids with autism may join the trajectory of kids with ASPERGERS, once a certain level of fluent language is developed. The results of the current study offer some support for this idea. Despite significant differences in level of impairment during early development, current reports and observations of social, communicative, and behavioral impairment yielded similar levels of functioning in the HIGH FUNCTIONING AUTISM and ASPERGERS groups. Early differences in functioning were not accounted for by differences in IQ and pattern of outcome was different for the two groups.

Although the HIGH FUNCTIONING AUTISM group showed less reported abnormality on current presentation than during early development, and thus was more similar to the ASPERGERS group, levels of functioning did not change for the ASPERGERS group and problems experienced in adolescence may even have been viewed as more severe by moms and dads. Both groups were clearly distinguished from the CD adolescents, who showed little impairment on these measures and for whom early social abnormality was associated with over-activity in a way that was not true of either ASPERGERS or HIGH FUNCTIONING AUTISM.

It is notable that similar developments have been reported when people with autism and language disorders are followed over time [16], [17]. In these studies, the two groups of young men, one group with autism and one with receptive language disorders, were initially assessed at 7–8 years of age and matched on nonverbal IQ and expressive ability at that time. At follow-up they were 23–24 years of age, and were compared on language and social and behavioral outcome measures. The autism group was significantly more impaired in almost every area of language assessed initially, but made more significant progress over time. PPVT and Verbal IQ scores rose significantly in the autism group as a whole, whereas the language group showed lower standard scores on the PPVT at follow-up, and verbal IQ scores remained the same. More generally, the two groups moved closer in terms of language functioning as adults and although the language group was less severely impaired on social and behavioral measures, most showed problems in these domains also. The boundaries between these two groups seemed to blur and the diagnostic picture became more complex over time. The predictive value of early developmental variables for later outcome, however, was distinct in the two groups.

Although early language ability seemed to be related to outcome in autism, there was little association between early measures and outcome in the language disorder group. Along similar lines, good verbal skills are consistently linked to outcome in autism, but normal age of onset of speech and good verbal skills in ASPERGERS does not necessarily lead to better functioning in this group as adolescents [24].

Taken together, the results of these studies suggest that differences between related diagnostic groups (e.g., HIGH FUNCTIONING AUTISM, ASPERGERS, language disordered) on measures of social, communicative, and behavioral functioning are obscured over time, particularly when the groups are compared in adolescence and adulthood. Data obtained early in development show distinctly different levels of impairment, despite achieving similar outcomes in many areas. This finding underscores the importance of obtaining a complete developmental history in the older patient. In addition, prospective longitudinal research is needed to identify potential differences in the factors that drive expression in these disorders; distinct early vulnerabilities may become similarly expressed as behavioral demands become increasingly complex. In addition, formal assessment instruments may not capture relevant qualitative differences between people with ASPERGERS and HIGH FUNCTIONING AUTISM, pointing to a need for more robust experimental measures.

Factors relating to outcome—

Ongoing research is needed to further document the long-term outcome of people with ASPERGERS. As part of this endeavor, it will also be important to examine factors that may influence adjustment in the various facets of adult life in ASPERGERS, identifying those that are predictive of outcome. Basic variables such as sex, SES, geography, perinatal complications, and medical conditions need to be identified. In lower functioning people with autism, for example, seizure disorder is common and risk is highest during early childhood and again during puberty [30]. Changes in medical status can be expected to influence functioning more generally. Factors such as age, SES, and geographic location may influence the quantity and quality of services delivered.

Additionally, features of ASPERGERS that may lead to misdiagnosis and misinterpretation of behaviors are relevant to a discussion of outcome in this disorder. Moms and dads of kids with ASPERGERS experience greater frustration in obtaining a diagnosis for their youngster, even when problems are noted early on [24], [31]. On average, kids with ASPERGERS receive a diagnosis and receive help much later in their development than do kids with autism [25], [31], [32]. ASPERGERS is typically identified in the school age youngster; as such, it would be instructive to examine how late detection affects outcome in ASPERGERS and the factors that contribute to later diagnosis. ASPERGERS is generally considered to be a less severe disorder than autism, but later diagnosis also may reflect the absence of well-established signifiers or poorly understood features. Deficits in the early stages of development in the youngster with ASPERGERS may seem subtle; as demands increase for more complex behaviors in a wider range of arenas, deficits may become more obvious.

Similarly, behaviors that are tolerable in the young youngster (and may even be described as “cute”) often are conspicuous in the older youngster. Anecdotal reports offer accounts of kids with ASPERGERS who are placed in inappropriate classroom environments because their behavior is misjudged to be defiant, willful, or even psychotic, rather than to be a manifestation of a significant developmental disability. The reverse scenario is also encountered; the cognitive strengths and verbal abilities of kids with ASPERGERS may mask the degree of difficulty they are experiencing. It is particularly important in the case of ASPERGERS that potential or actual difficulties are not underestimated.

Conclusions drawn from outcome research are informative about ASPERGERS as a group; assessments of individual functioning are important to appreciate the unique strengths and weaknesses of the youngster that may affect outcome and treatment approach. There is limited research on the relationship between neuropsychologic variables and social, adaptive, and behavioral functioning. A particular neuropsychologic profile, nonverbal learning disability [33], may serve as a model for ASPERGERS [1], [34] and may differentiate outcome for those who do and do not show profile. Another line of investigation that holds promise is the relationship between specific cognitive variables and outcome variables. For example, cognitive performance was found to be a significant predictor of job tenure but not job attainment in a sample of persons with schizophrenia [35].

Psychiatric comorbidity is an especially salient variable in ASPERGERS and likely to account for differences in outcome. Further research is needed to examine the extent and manner in which comorbid conditions or symptomatology influence the course and outcome of ASPERGERS, and evaluate differences between them. From a clinical perspective, the presence of associated conditions may confuse diagnosis and delay identification of ASPERGERS.

On the flipside, a person with ASPERGERS may present with symptoms that are not easily recognized to be a part of the disorder versus a comorbid condition (e.g., disorganized thought process that reflects psychosis versus an atypical communication style characteristic of ASPERGERS). Recognizing and treating comorbid conditions is seen to improve outcome, including decreasing problematic behaviors in the youngster and disruption in the family [36]. Anxiety and affective disorders seem to be the most common comorbid conditions in autism and ASPERGERS [2], [25], and if present need to be addressed as part of the treatment plan. Minimizing secondary problems in ASPERGERS can positively effect change, increasing the youngster's ability to develop existing skills to the fullest.

It also remains to be seen whether and to what extent the presence of these comorbid conditions in ASPERGERS may be explained by neurobiologic or family genetic factors. More commonly, an association is posited between increasingly negative experiences in adolescence and feelings of depression. The clinical features of ASPERGERS are inherently double edged; on the one hand, kids with ASPERGERS are described to show a desire for friendships and to be fairly sociable; they are verbally adept and may be able to poignantly articulate some aspects of their experience [3], [37]. On the other hand, these kids are characterized by a lack of social and common sense, tending to be na─▒̈ve and vulnerable to exploitation. This discrepancy is not overlooked in practice. One of the key characteristics that influences clinician diagnosis of ASPERGERS over HIGH FUNCTIONING AUTISM is desire for social interaction, whereas both groups are considered to be equally poor at attaining and keeping friends [31].

In ASPERGERS, the desire for social interaction is frustrated by a fundamental inability to adequately navigate the social world, and may be met with repeated failures. Further, rates of peer isolation and victimization are high for the school aged youngster with ASPERGERS [3], [29]. It may not be surprising then that varying degrees of depression are found as age and social pressures increase. Outcome research also needs to account for the experiences of the person with ASPERGERS and the role of positive social contact and peer groups in improving adjustment [3].

The person with ASPERGERS faces unique challenges, but it is also important to consider how the family copes with their youngster's condition. Although it is now clear that family dynamics or personal features do not cause autism, it can be expected that a youngster with autism or ASPERGERS will affect family functioning. The coping and outcome of the youngster may be related to the coping resources of the family, or may be affected by other family stressors (e.g., death or divorce).

A review of the literature of the past 10 years investigating family factors in the onset and outcome of medical and psychiatric childhood disorders points to some general findings that also may have implications for research and intervention in ASPERGERS [38]:

(1) Shared environmental factors play less of a role in internalizing disorders; rather, family processes (particularly criticism and emotional over-involvement) differentially focused on one youngster affects the risk for depression. Criticism also is associated with poor outcome for many medical and psychiatric disorders.

(2) Family processes may be a problem area, but also the added stress of an affected youngster can lead to changes in family functioning. Helping the family to cope has been shown to improve the medical outcome of kids; reducing the burden on families affected by autism or ASPERGERS also may help to mitigate secondary behavioral problems in the youngster.

(3) Family variables are especially relevant to the onset and course of externalizing disorders; interventions directed at changing the family environment or mother/fathering style can mitigate the expression of externalizing symptoms.

Implications for intervention—

People with ASPERGERS show several assets, including good cognitive ability, well developed language skills, and areas of special interest through which they may forge friendships and find satisfying jobs. The indication from descriptive reports, clinical experience, and outcome research, however, is that persons with ASPERGERS may be less impaired than those with HIGH FUNCTIONING AUTISM, but still endure a severe developmental disability. A minority of people achieves some independence in self-care and gainful employment, but most tend to live at home, hold no job, and have few or no friends. The research on long-term adjustment and comparative outcome in ASPERGERS and autism highlights the importance of some basic though often neglected components of intervention:

• Although sometimes proffered, there is no “cure” for autism or ASPERGERS at present. As such, the therapeutic process needs to be seen as continuous. Impairments in the youngster with ASPERGERS linger and core deficits are likely to manifest in different ways at different developmental stages. This should not diminish the effect of important developmental gains, nor obscure the next required step.

• Appropriate educational opportunities and support services need to be secured early, even in the face of more subtle deficits. Although people with ASPERGERS display cognitive and academic strengths, their capacity for independent functioning and forming relationships is persistently impaired. Intervention needs to focus on enhancing social communication and competence, and adaptive functioning.

• Gaps in awareness and services need to be addressed, including producing a greater research-based body of knowledge on outcome and effective interventions in ASPERGERS, and augmenting community and employment resources, recognizing that the affected youngster or adolescent will become an adult with ASPERGERS.

• In addition to support for the youngster or adolescent with ASPERGERS, there needs to be effective support for families. This may include mother/father guidance aimed at increasing understanding, helping with difficulties responding to behaviors, or effecting change in negative patterns of interaction; management issues, such as interactions with school authorities, organizing time, and planning for the future; and enhancing coping resources, providing moms and dads and siblings with an opportunity to verbalize their thoughts and feelings.

• Peer isolation and victimization are a frequent problem and may increase risk for depression; a learning environment that fosters a climate of acceptance in which the youngster with ASPERGERS feels secure and supported is vital. In addition, opportunities for social interaction and facilitation of social relationships in fairly structured and supervised activities are suggested. The make-up of these groups should be carefully selected in terms of not including peers who, despite having a good understanding of social rules, might violate the rules or would be likely to tease the youngster.

• Transition planning is of paramount importance. The learning curriculum from the start should be based on long-term goals, including autonomy, employment, and fulfillment. One strategy is to capitalize on relative strengths and foster talents and interests in a systematic fashion. There also needs to be specific training that focuses on the skills needed for self sufficiency (e.g., self-care, shopping, and transportation use) and skills needed for college or employment.

Living With Aspergers: Help for Couples



References—
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[17]. [17] Howlin P, Mawhood L, Rutter M. Autism and developmental receptive language disorder – a follow-up comparison in early adult life. II. Social, behavioral, and psychiatric outcomes. J Child Psychol Psychiatry Allied Disciplines. 2000;41:561–578.
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Ways to Stop Aggressive Behavior in Aspergers Children

Question

Is there a way to stop aggressive behavior when a young child with Aspergers is in the middle of a meltdown?

Answer

It is not uncommon for kids with Aspergers (high-functioning autism) to become aggressive. Aspergers causes a youngster to struggle to understand how their behaviors affect other kids. The many symptoms and characteristics of the disorder can cause extreme frustration. This frustration can lead to anxiety, depression, anger, and aggressive behavior. 

Here are a few specific reasons for aggressive meltdowns:
  • Change of routine: Inability to handle unexpected changes in the daily schedule, such as a substitute teacher or a cancelled class period
  • Communication problems: Inability to recognize humor, sarcasm, or slang during conversations with peers
  • Sensory issues: Inability to handle the discomfort in the environment due to sights, sounds, smells, or other sensory dysfunction
  • Social struggles: Inability to understand social cues and gestures or to make and keep friends

Aspergers calls for a direct approach. Therapies such as cognitive-behavioral therapy, social skills training, and occupational therapy will help with levels of frustration and also touch on self-control, a necessary skill for all of us. However, there are several things parents can do at home to lessen the impact of aggressive meltdowns.

Here are a few tips:

  • Redirection can sometimes be used during the beginning stages of a meltdown to reduce the escalation.
  • Removal from the situation is necessary once a meltdown has developed.
  • Role-play appropriate responses to tricky situations with your youngster. Role-playing is an excellent option for teaching all types of social skills to kids with Asperger’s.
  • Social stories are excellent for teaching young kids about problem behaviors. These should be used during quiet moments and not during any stage of aggressiveness or frustration.
  • Teach youngster to recognize red light/green light behaviors, red being a poor choice and green being a good choice.

My Aspergers Child: Preventing Aggressive Behavior in Aspergers Children

How can I deal with transition between schools for my son with Asperger Syndrome?

Question

How can I deal with transition between schools for my son with Asperger Syndrome?

Answer

For kids with Aspergers (high-functioning autism), transition between schools will evoke a wide range of negative emotions. Change is difficult for these kids, and when a new school year rolls around, everything changes. New classmates, new teachers, and new schedules can cause major anxiety, which can spiral to depression.

Dealing with the Aspergers transition problems can also affect your youngster’s home life. Anxiety brought about at school will carry over at home causing disruption. Anger and frustration can escalate, triggering meltdowns. While the transition at school cannot be avoided, there are things a parent can do to lessen the effects of all the change that comes with moving to a new school. 

 Here are some tips to help you deal with this unstable period in your youngster’s life:

Plan ahead—

Begin planning for the Aspergers transition phase well in advance. Make a checklist of people to speak with and places to visit. Your list may look like this:
  • Create a visual calendar that shows when the change will occur.
  • Meet with the special education coordinator at the new school to discuss my youngster and ways this person can help with the transition.
  • Schedule doctor’s appointments and therapy appointments to discuss counseling, medication, and any other available forms of help for my youngster’s transition.
  • Talk to my youngster about the changes that are coming.
  • Visit current teachers and therapists and request their help.
  • Visit the new school for a tour and then plan a visit with my youngster.

Prepare your youngster—

Moms and dads must prepare their youngster for the Aspergers transition period. Talk with your youngster about the change that is coming long before it actually happens. For example, near the end of this school year you can mention during your drives to school how your morning drive will be different next year. This will most likely bring protests, and this will give you a chance to talk positively about the new school. Keep it light and without pressure.

Prime the school staff—

The teachers and therapists at your youngster’s new school should know all about your youngster with Aspergers. Transition will be less difficult if the new school staff has a plan in place specifically for your youngster.

Put together a support program—

A complete and dedicated team should be in place for your youngster with Aspergers. Transition team members may include the pediatrician, neurologist, psychologist, school counselor, teacher, and most importantly, the moms and dads. While the medical community may rely on medical tests, medications, and therapies, the moms and dads can offer support at home. Moms and dads can find resources like books and videos to help them encourage their youngster.

My Aspergers Child: Preventing Meltdowns in Aspergers Children

TEACHING SOCIAL SKILLS TO KIDS WITH ASPERGERS

KEY CONCEPTS:

1. Aspergers kids and teens are often described by their parents as being bright but clueless.

2. Kids with Aspergers often score well within the normal range on standardized tests typically used by schools to evaluate students. These tests usually do not test for social skills.

3. It is often helpful for parents to think of themselves as coaches for their kids.

4. Children/teens with Aspergers can have wide ranges of strengths and weaknesses which can puzzle and frustrate parents and educators. For example, since he can program a computer, why can’t he write a book report?

5. Persons with social-cognitive deficits still desire successful social relationships and companionship. Do not assume that they don’t want to have friends.

6. Poor parenting or role modeling does not cause Aspergers.


INTERVENTIONS:

1. An activity notebook: These can be used to document all the activities in a given day. Then parents and youngster together can plan for minor changes in routines to help decrease time spent in repetitive stereotypes movements such as rubbing or twirling, or spending all one’s time on a single interest.

2. Discussions on specific topics such as how to greet others, how to wait your turn, how to ask for something, what to do when you don’t get your own way, and how to tell someone you like them. Use pictures, role model actual situations, or write in a journal.

3. Emotion Flash Cards or vocabulary cards: These are cards that describe in pictures various emotions.

4. How to give and receive compliments. What types of compliments are appropriate in a given situation?

5. How to help others. Teach the youngster or teen specific tools to use to understand situations in which it is or isn’t appropriate to help others.

6. How to understand and use skills such as using a friendly and respectful tone of voice, or waiting for pauses in conversation.

7. Learning to recognize early signs of stress and anxiety, to avoid going into the anxiety-anger cycle.

8. Roll-play various stressful and/or emotional situations.

9. Strategies to teach how to recognize and cope with one’s emotions. These include the use of an anger thermometer, lists of things that might make one horrified, bored, confused, overjoyed, or mad; or emotion scales which assign a number score to the intensity of a given emotion.

10. Teach commonsense rules for starting conversations. For example, one system is the PATHS method. This stands for Prepare ahead, Ask yourself what you are going to talk about, Time it right, say Hello, and watch for nonverbal Signals.

11. Teach how to notice and use nonverbal skills. For example, the SENSE method. This stands for Space (maintain the proper physical space between others), Eye Contact, Nodding (To show agreement or disagreement), Statements of Encouragement (such as uh-uh), and Expressions (face).

12. Teach the difference between public and private. Be very specific. Make lists or draw pictures of private activities and public activities. Make lists of examples of private places and public places.

13. Teach vocal cues. One such cue is proper use of tone of voice. Ask teen or youngster to try to guess what people are thinking based on inflection in speech patterns or tone of voice.

14. The “I Laugh” Approach: These are a series of specific exercises to teach communication skills and problem solving. “I Laugh” stands for: Initiating new activities, Listen effectively, Abstracting and inference, Understanding perspective, Gestalt, the big picture, and Humor.

Teaching Social Skills and Emotion Management

Online Resources for Parents with Aspergers Children


·         If you want a list of books and videos about Aspergers, try:
http://www.kandi.org/aspergers/Books_and_Videos/index2.html

·         If you want to buy computer software that helps children with Aspergers, try:
http://www.udel.edu/bkirby/asperger
 
·         If you want to find a professional clinician in your area, go to:  
http://www.aspergers.com/asplist.htm
http://www.udel.edu/bkirby/asperger

·         If you want to find a summer camp or boarding school program for kids with Aspergers, try:
http://www.talismancamps.com
http://www.newleafacademy.com (middle school females)


Helpful Websites:

·         A Directory for Aspergers: Support Groups and Organizations
http://www.kandi.org/aspergers/index2.html
This website is a great place to start your search for local, national and international organizations and support groups as well as to get more information. There are over 200 websites featured here; however, many are more about autism. You get links to books, videos, news and magazine articles, and supplies for Aspergers children. You can also find chat rooms, personal web pages, message boards, and many other websites. Some are for teachers only.

·         ASPEN (Aspergers Educational Network)
9 Aspen Circle, Edison, NJ 08820
http://www.aspennj.org/
Aspen is a non-profit organization for people and families with Aspergers in the New Jersey area. Yearly dues are $35. It operates many support groups in New Jersey, and sponsors educational conferences for parents. The website has a wealth of good information about Aspergers for everyone.

·         ASPERGER HELP
http://aspergerhelp.net/
This is an online resource with forums, blogs, articles and information about Aspergers. Besides getting plenty of information, you can join an online support group here.

·         Aspergers And High Functioning Autism Association
PO Box 475, Roslyn Heights, New York 11577
http://www.ahany.org/index.htm
AHA is a coalition of parents who support one another as they seek to improve educational resources and increased opportunities for adults and children with high functioning autism and Aspergers. AHA has an impressive advisory board of professors and medical doctors. It offers conferences and support groups in New York for parents, teens and adults with Aspergers or high functioning Autism as well as a quarterly newsletter. The AHA website is a font of information about Aspergers.

·         MAPP Services
Box 524, Crown Point, IN 46308
Website: http://www.asperger.org
MAPP Services is an organization providing information and support for those whose autism does not involve intellectual impairment. MAPP stands for "More advanced individuals with Autism, Aspergers, and Pervasive developmental disorder (PDD)." This organization began in 1984 with just 24 families; now its newsletter, The MAPP, reaches over 10,000. Their website gives links to local groups in every state, and contains a lot of up-to-date research on Aspergers.

·         O.A.S.I.S.(Online Aspergers Information and Support)
Patricia Romanowski Bashe and Barbara Kirby
http://www.udel.edu/bkirby/asperger/
These two authors wrote the Oasis Guide to Aspergers (New York: Crown Publishing) 2005, and now keep parents up-to-date through their award-winning Oasis website. You can find a bookstore, scholarly papers and articles, teachers' tips and resources, and plenty of advice for parents on everything from legal rights in school systems to helping Aspergers individuals get employment. State by state listings of local professionals who can help you in your area, also lists of camps and boarding schools for Aspergers children are included, plus many links to other helpful websites.


Additional resources:

·         Parents’ Strategies A-Z

Aspergers: A Clinical Account

The many patterns of abnormal behavior that cause diagnostic confusion include one originally described by the Austrian psychiatrist, Hans Asperger (1944, 1968, 1979). The name he chose for this pattern was 'autistic psychopathy' using the latter word in the technical sense of an abnormality of personality. This has led to misunderstanding because of the popular tendency to equate psychopathy with sociopathic behavior. For this reason, the neutral term Aspergers is to be preferred and will be used here.

Not long before Asperger' s original paper on this subject appeared in 1944, Kanner (1943) published his first account of the disorder he called early infantile autism. The two conditions are, in many ways, similar, and the argument still continues as to whether they are varieties of the same underlying abnormality or are separate entities.

Whereas Kanner's work is widely known internationally, Aspergers contribution is considerably less familiar outside the German literature. The only published discussions of the subject in English known to the present author are by Van Krevelen (1971), Isaev & Kagan (1974), Mnukbin & Isaev (1975) (translation from Russian), Wing (1976), Chick et al (1979), Wolff & Barlow (1979) and Wolff & Chick (1980). In addition, a book by Bosch in which autism and Aspergers are compared, originally appearing in German in 1962, has been translated into English (Bosch, 1962). A paper given by Asperger in Switzerland in 1977 has appeared in an English version (Asperger, 1979). Robinson & Vitale (1954) and Adams (1973) gave clinical descriptions of kids with behavior resembling Aspergers, but without referring to this diagnosis.

In the present paper the disorder will be described, illustrated with case histories, and the differential diagnosis and classification discussed. The account is based on Aspergers descriptions and on 34 cases, ranging in age from 5 to 35 years, personally examined and diagnosed by the author. Of these, 19 had the history and clinical picture of the disorder in more or less typical form and 15 showed many of the features at the time they were seen, though they did not all have the characteristic early history (see below). Six of those in the series were identified as a result of an epidemiological study of early childhood psychoses in the Camberwell area of south-east London (Wing & Gould, 1979). The rest were referred to the author for diagnosis - 11 by their moms and dads, through the family doctor, two by head educators and 15 by other psychiatrists.

The following general description includes all the most typical features. But, as with any psychiatric disorder identifiable only from a pattern of observable behavior, there are difficulties in determining which are essential for diagnosis. Variations occur from person to person and it is rare to find, in any one case, all the details listed below.

The clinical picture—

Illustrative case histories based on those of kids and grown-ups seen by the present author are to be found in the Appendix. Throughout the paper, the numbers in parentheses refer to these histories.

Aspergers description of the disorder:

Asperger noted that the disorder was very much more common in males than in females. He believed that it was never recognized in infancy and usually not before the third year of life or later. The following description is based on Aspergers accounts.

Speech:

The youngster usually begins to speak at the age expected in normal kids, whereas walking may be delayed. A full command of grammar is sooner or later acquired, but there may be difficulty in using pronouns correctly, with the substitution of the second or third for the first person forms (No. 1). The content of speech is abnormal, tending to be pedantic and often consisting of lengthy disquisitions on favorite subjects (No.2). Sometimes a word or phrase is repeated over and over again in a stereotyped fashion. The youngster or adult may invent some words. Subtle verbal jokes are not understood, though simple verbal humor may be appreciated.

Non-verbal communication:

Non-verbal aspects of communication are also affected. There may be little facial expression except with strong emotions such as anger or misery. Vocal intonation tends to be monotonous and droning, or exaggerated. Gestures are limited, or else large and clumsy and inappropriate for the accompanying speech (No. 2). Comprehension of other individual’s expressions and gestures is poor and the person with Aspergers may misinterpret or ignore such non-verbal signs. At times he may earnestly gaze into another person's face, searching for the meaning that eludes him.

Social interaction:

Perhaps the most obvious characteristic is impairment of two-way social interaction. This is not due primarily to a desire to withdraw from social contact. The problem arises from a lack of ability to understand and use the rules governing social behavior. These rules are unwritten and unstated, complex, constantly changing, and affect speech, gesture, posture, movement, eye contact, choice of clothing, proximity to others, and many other aspects of behavior. The degree of skill in this area varies among normal individuals, but those with Aspergers are outside the normal range. Their social behavior is naive and peculiar. They may be aware of their difficulties and even strive to overcome them, but in inappropriate ways and with signal lack of success. They do not have the intuitive knowledge of how to adapt their approaches and responses to fit in with the needs and personalities of others. Some are over-sensitive to criticism and suspicious of other individuals. A small minority have a history of rather bizarre antisocial acts, perhaps because of their lack of empathy. This was true of four of the present series, one of whom injured another boy in the course of his experiments on the properties of chemicals.

Relations with the opposite sex provide a good example of the more general social ineptitude. A young man with Aspergers observes that most of his contemporaries have girl friends and eventually marry and have kids. He wishes to be normal in this respect, but has no idea how to indicate his interest and attract a partner in a socially acceptable fashion. He may ask other individuals for a list of rules for talking to females, or try to find the secret in books (No. 1). If he has a strong sex drive he may approach and touch or kiss a stranger, or someone much older or younger than himself, and, as a consequence, find himself in trouble with the police; or he may solve the problem by becoming solitary and withdrawn.

Repetitive activities and resistance to change:

Kids with Aspergers often enjoy spinning objects and watching them until the movement ceases, to a far greater extent than normal. They tend to become intensely attached to particular possessions and are very unhappy when away from familiar places.

Motor co-ordination:

Gross motor movements are clumsy and ill-coordinated. Posture and gait appear odd (No.1). Most individuals with Aspergers (90% of the 34 cases mentioned above) are poor at games involving motor skills, and sometimes the executive problems affect the ability to write or to draw. Stereotyped movements of the body and limbs are also mentioned by Asperger.

Skills and interest:

Those with the disorder in most typical form have certain skills as well as impairments. They have excellent rote memories and become intensely interested in one or two subjects, such as astronomy, geology, the history of the steam train, the genealogy of royalty, bus time-tables, prehistoric monsters, or the characters in a television serial, to the exclusion of all else. They absorb every available fact concerning their chosen field and talk about it at length, whether or not the listener is interested, but have little grasp of the meaning of the facts they learn. They may also excel at board games needing a good rote memory, such as chess (No.2), and some have musical ability. Seventy-six per cent of the present author's series had special interests of this kind. However, some have specific learning problems, affecting arithmetical skills, reading, or, as mentioned above, writing.

Experiences at school:

This combination of school and communication impairments, and certain special skills gives an impression of marked eccentricity. The kids may be mercilessly bullied at school, becoming, in consequence, anxious and afraid (Nos. I and 2). Those who are more fortunate in the schools they attend may be accepted as eccentric 'professors', and respected for their unusual abilities (No.4). Asperger describes them as unsatisfactory students because they follow their own interests regardless of the teacher's instructions and the activities of the rest of the class (Nos. 3 and 4). Many eventually become aware that they are different from other individuals, especially as they approach adolescence, and, in consequence, become over-sensitive to criticism. They give the impression of fragile vulnerability and a pathetic youngsterishness, which some find infinitely touching and others merely exasperating.

Modifications of Aspergers account:

The present author has noted a number of additional items in the developmental history, not recorded by Asperger, which can sometimes be elicited by appropriate questioning of the moms and dads. During the first year of life there may have been a lack of the normal interest and pleasure in human company that should be present from birth. Babbling may have been limited in quantity and quality. The youngster may not have drawn attention to things going on around him in order to share the interest with other individuals. He may not have brought his toys to show to his moms and dads or visitors when he began to walk. In general, there is a lack of the intense urge to communicate in babble, gesture, movement, smiles, laughter and eventually speech that characterizes the normal baby and toddler (No.3).

Imaginative pretend play does not occur at all in some of those with the disorder, and in those who do have pretend play it is confined to one or two themes, enacted without variation, over and over again. These may be quite elaborate, but are pursued repetitively and do not involve other kids unless the latter are willing to follow exactly the same pattern. It sometimes happens that the themes seen in this pseudo-pretend play continue as preoccupations in adult life, and form the main focus of an imaginary world (see the case history of Richard L. in Bosch, 1962).

There are also two points on which the present author would disagree with Aspergers observations. First, he states that speech develops before walking, and refers to 'an especially intimate relationship with language' and 'highly sophisticated linguistic skills'. Van Krevelen (1971) emphasized this as a point of differentiation from Kanner's early childhood autism, in which, usually, walking develops normally, or even earlier than average, whereas the onset of speech is markedly delayed or never occurs. However, slightly less than half of the present author's more typical cases of Aspergers were walking at the usual age, but were slow to talk. Half talked normally but were slow to walk, and one both walked and talked at the expected times. Despite the eventual good use of grammar and a large vocabulary, careful observation over a long enough period of time discloses that the content of speech is impoverished and much of it is copied inappropriately from other individuals or books (No.3). The language used gives the impression of being learned by rote. The meanings of long and obscure words may be known, but not those of words used every day (No.5). The peculiarities of non-verbal aspects of speech have already been mentioned.

Secondly, Asperger described individuals with his disorder as capable of originality and creativity in their chosen field. It would be more true to say that their thought processes are confined to a narrow, pedantic, literal, but logical, chain of reasoning. The unusual quality of their approach arises from the tendency to select, as the starting point for the logical chain, some aspect of a subject that would be unlikely to occur to a normal person who has absorbed the attitudes current in his culture. Usually the result is inappropriate, but once in a while it gives new insight into a problem. Asperger also believed that individuals with his disorder were of high intelligence, but he did not quote the results of standardized intellectual tests to support this. As will be seen from the case histories in the Appendix, the special abilities are based mainly on rote memory, while comprehension of the underlying meaning is poor. Those with the disorder are conspicuously lacking in common sense.

It must be pointed out that the individuals described by the present author all had problems of adjustment or superimposed psychiatric illnesses severe enough to necessitate referral to a psychiatric clinic. Nine had left school or further education. Of these, three were employed, three had lost their jobs, and three had not obtained work. The author is also acquainted, through their moms and dads who are members of The National Society for Autistic Kids, with a few young grown-ups reported to have some or all of the features of Aspergers, and who are using their special skills successfully in open employment. It would be inappropriate to give precise numbers or to include these in the series, because the author does not have access to case histories or assessment. For this reason, the series described here is probably biased towards those with more severe handicaps.

Course and prognosis—

The published clinical descriptions are of kids and young grown-ups. No studies of the course and prognosis in later life are available.

Asperger emphasized the stability of the clinical picture throughout childhood, adolescence and at least into early adult life, apart from the increase in skills brought about by maturation. The major characteristics appear to be impervious to the effects of environment and education. He considered the social prognosis to be generally good, meaning that most developed far enough to be able to use their special skills to obtain employment. He also observed that some who had especially high levels of ability in the area of their special interests were able to follow careers in, for example, science and mathematics.

As Bosch (1962) pointed out, it is possible to find individuals with all the features characteristic of Aspergers other than normal or high intelligence. This applied to 20% of the series described here. If these are accepted as belonging to the same diagnostic category, then Aspergers rather hopeful view of the prognosis has to be modified to take such cases into account (see the case history of J.G., Appendix No.5).

The prognosis is also affected by the occurrence of superimposed psychiatric illnesses. Clinically diagnosable anxiety and varying degrees of depression may be found, especially in late adolescence or early adult life, which seem to be related to a painful awareness of handicap and difference from other individuals (Nos. 2 and 3). Wolff & Chick (1980), in a follow-up study of 22 individuals with Aspergers, reported one who appeared to have a typical schizophrenic illness and another in whom this diagnosis was made, but less convincingly. Five of the 22 had attempted suicide by the time of early adult life.

The present author's series included 18 who were aged 16 and over at the time they were seen. Of these, four had an affective illness; four had become increasingly odd and withdrawn, probably with underlying depression; 1 had a psychosis with delusion and hallucinations that could not be classified; I had had an episode of catatonic stupor; one had bizarre behavior and an unconfirmed diagnosis of schizophrenia; and two had bizarre behavior, but no diagnosable psychiatric illness. Two of the foregoing had attempted suicide and one had talked of doing so. These two were referred because of their problems in coping with the demands of adult life.

Though it appears that the risk of psychiatric illness in Aspergers is high, it is difficult to draw firm conclusions because of the nature of the samples that were studied. The 13 individuals mentioned above, before they were seen by the present author, had been referred to adult services because of superimposed psychiatric conditions, so the series was highly biased. Wolff's cases were somewhat less selective since they were referred as kids and followed up into adult life, but, even so, they were clinic and not population based. Asperger (1944) noted that only one of his 200 cases developed schizophrenia. The true prevalence of psychiatric illnesses can be calculated only from an epidemiological study, including individuals with the disorder not referred to psychiatric services.

Even in the absence of recognizable psychiatric disorder, adolescence may be a difficult time. The development of partial insight and increasing sexual awareness can cause much unhappiness (No. I) and may lead to socially unacceptable behavior. Peculiarities which may be ignored in a small youngster become very obvious in a young adult.

The degree of adjustment eventually achieved appears to be related to the level and variety of skills available and also to the temperament of the individual concerned. Good self-care, a special ability that can be used in paid employment, and a placid nature are needed if a person with Aspergers is to become socially independent.

Aetiology and pathology—

Asperger (1944) considered his disorder to be genetically transmitted. He reported that the characteristics tended to occur in the families, especially the fathers of those with the disorder. Van Krevelen (1971) stated that, in many cases, the antecedents for generations back had been highly intellectual. In the present author's series, 55% had fathers who were in professional or managerial occupations, but the personalities of the moms and dads were not studied systematically. In many cases, the mother alone was seen. The purpose of the interview was to discuss the problems of the youngster, not to investigate the moms and dads. Including only those concerning whom some tentative conclusions could be drawn (from clinical impressions or evidence from other sources), it appeared that 5 out of 16 fathers and 2 out of 24 mothers had, to a marked degree, behavior resembling that found in Aspergers. No features of the clinical picture appeared to be associated with higher or lower social class, level of education of the moms and dads, or their personalities.

It is difficult to interpret the findings on social class, since the cases referred to clinics having a special interest in such problems are a selected group, with a strong bias towards higher social class and intellectual occupations in the moms and dads. Schopler et al (1979) and Wing (1980) noted a similar bias in the fathers of classically autistic kids referred to clinics, which was not reflected in less selected groups with the same diagnosis. The findings concerning the moms and dads' personalities have to be treated with caution because of the way they were obtained and the lack of any comparison group.

The disorder can be found in kids and grown-ups with history of pre-, pen- or post-natal conditions, such as anoxia at birth, which might have caused cerebral damage. This was true of nearly half of those seen by the present author (Nos. 3 and 4). Mnukhin & Isaev (1975) considered that the behavior pattern was due to organic deficiency of brain function.

Emotional causes or abnormal youngster-rearing methods have been suggested, especially where the moms and dads or siblings show similar peculiarities to the patient, but there is no evidence to support such theories.

Detailed epidemiological studies, based on total populations, are needed in order to establish which, if any, of these aetiological factors are relevant.

No specific organic pathology has been identified. No particular abnormalities of face or body have been reported. In childhood the physical appearance is usually, but by no means always, normal. In adolescence and adult life, the inappropriate gait, posture and facial expression produce an impression of oddness.

In general, on psychological assessment, tests requiring good rote memory are performed well, but deficits are shown with those depending on abstract concepts, or sequencing in time. Visuo-spatial abilities vary and the scores on testing may be markedly lower than those for expressive speech (No.4). The results of psychological testing will be described in more detail elsewhere.

Epidemiology—

As already mentioned, no detailed, large-scale epidemiological studies have been carried out, so that the exact prevalence of Aspergers is unknown. A major difficulty in designing such a study would be the establishment of criteria for distinguishing the disorder from other similar conditions, as will be discussed later.

Wing & Gould (1979) carried out a study in which all the mentally and physically handicapped kids aged under 15 in one area of London were screened in order to identify cases of early childhood psychosis and severe mental retardation. In this study, two kids (0.6 per 10,000 aged under 15) showed most of the characteristics of Aspergers, though they were in the mildly retarded range on intelligence tests, and 4 (1.1 per 10,000) could have been diagnosed as autistic in early life, but came to resemble Aspergers later. There were a total of 35,000 kids aged under 15 in the area.

Wing & Gould did not use methods designed to identify mild cases of Aspergers, so that any kids who were attending normal school and had not come to the attention of the educational, social or medical services would not have been discovered. The prevalence rate for the typical disorder given above is almost certainly an underestimate.

The disorder appears to be considerably more common in males than in females. Asperger originally believed it to be confined to males, though he modified this view later (personal communication). Wolff & Barlow (1979) mentioned that the clinical picture could be seen in females. In their series the male:female ratio was 9:1. In the present author's series there were 15 males and 4 females with the disorder in fairly typical form, and 13 males and 2 females who had many of the features. The females tended to appear superficially more sociable than the males, but closer observation showed that they had the same problems of two-way social interaction.

Differential diagnosis—

As with any condition identifiable only from a pattern of abnormal behavior, each element of which can occur in varying degrees of severity, it is possible to find individuals on the borderlines of Aspergers in whom diagnosis is particularly difficult. Whereas the typical case can be recognized with ease by those with experience in the field, in practice it is found that the disorder shades into eccentric normality, and into certain other clinical pictures. Until more is known of the underlying pathology, it must be accepted that no precise cut-off points can be defined. The diagnosis has to be based on the full developmental history and presenting clinical picture, and not on the presence or absence of any individual item.

Normal variant of personality:

All the features that characterize Aspergers can be found in varying degrees in the normal population. Individuals differ in their levels of skill in social interaction and in their ability to read nonverbal social cues. There is an equally wide distribution in motor skills. Many who are capable and independent as grown-ups have special interests that they pursue with marked enthusiasm. Collecting objects such as stamps, old glass bottles, or railway engine numbers are socially accepted hobbies. Asperger (1979) pointed out that the capacity to withdraw into an inner world of one's own special interests is available in a greater or lesser measure to all human beings. He emphasized that this ability has to be present to marked extent in those who are creative artists or scientists. The difference between someone with Aspergers and the normal person who has a complex inner world is that the latter does take part appropriately in two-way social interaction at times, while the former does not. Also, the normal person, however elaborate his inner world, is influenced by his social experiences, whereas the person with Aspergers seems cut off from the effects of outside contacts.

A number of normal grown-ups have outstandingly good rote memories and even retain eidetic imagery into adult life. Pedantic speech and a tendency to take things literally can also be found in normal individuals.

It is possible that some individuals could be classified as suffering from Aspergers because they are at the extreme end of the normal continuum on all these features. In others, one particular aspect may be so marked that it affects the whole of their functioning. The man described by Luria (1965), whose visual memories of objects and events were so vivid and so permanent that they interfered with his comprehension of their significance, seemed to have behaved not unlike someone with Aspergers. Unfortunately, Luria did not give enough details to allow a diagnosis to be made.

Even though Aspergers does appear to merge into the normal continuum, there are many cases in whom the problems are so marked that the suggestion of a distinct pathology seems a more plausible explanation than a variant of normality.

Schizoid personality:

The lack of empathy, single-mindedness, odd communication, social isolation and over-sensitivity of individuals with Aspergers are features that are also included in the definitions of schizoid personality (see review by Wolff & Chick, 1980). Kretschmer (1925) outlined some case histories of so-called schizoid grown-ups, one or two of which were strongly reminiscent of this condition, although he did not provide sufficient detail to ensure the diagnosis. For example, one young man had no friends at school, was odd and awkward in social interaction, always had difficulty with speech, never took part in rough games, was oversensitive, and very unhappy when away from home. He thought out fantastic technical inventions and, together with his sister, invented a detailed imaginary world.

There is no question that Aspergers can be regarded as a form of schizoid personality. The question is whether this grouping is of any value. This will be discussed below in the section on classification.

Schizophrenia:

Grown-ups with Aspergers may be diagnosed as suffering from schizophrenia. The differential diagnosis of schizophrenia has been discussed elsewhere (J.K.Wing, 1978). The main difficulty arises from the fact that schizophrenia has been defined loosely by some and strictly by other workers.

If a loose definition of schizophrenia is accepted, based only on characteristics such as social withdrawal and speech disorder, then a case could perhaps be made for including Aspergers in this group. As with schizoid personality, the question is whether doing so has any advantages. Poverty of social interaction and abnormalities of speech can have many different causes, so the diagnosis of chronic or simple schizophrenia tends to cover a variety of conditions having little in common with each other.

Careful observation of speech in Aspergers discloses differences from thought blocking and the 'knight's move' in thought described by Bleuler (1911). In Aspergers, speech may be slow, and there may be irrelevant or tangential replies to questions, but these problems are due partly to a tendency to become stuck in well-worn conversational grooves rather than to produce new ideas. Utterances are always logical, even if they are unrelated to the question, or originated from an unusual point of view. Thus one young man, when asked a general knowledge question about organized charities, said 'They do things for unfortunate individuals. They provide wheelchairs, stilts and round shoes for individuals with no feet'. There is a marked contrast between the vague woolliness of schizophrenic thought and the concrete, pedantic approach found in Aspergers.

The term schizophrenia can be used more strictly. It can be confined to those who have, currently or in the past, shown the florid first-rank symptoms described by Schneider (1971). In this case, the differentiation of Aspergers rests on accurate definition of the clinical phenomena. Unless they have a superimposed schizophrenic illness, individuals with Aspergers do not experience thought echo, thought substitution or insertion, thought broadcast, voices commenting on their actions, voices talking to each other, or feelings that external forces are exerting control over their will, emotions or behavior. The young man, L.P. (Appendix No. 2), when asked if he had such experiences, gave the matter long and careful thought and then said, 'I believe such things to be impossible'.

During clinical examination it is necessary to be aware that comprehension of abstract or unfamiliar concepts is impaired in Aspergers. Those with the more severe form of the handicap may have a habit of answering 'yes' to any question they do not understand, this being the quickest way to cut short the conversation. Some may also pick up and repeat phrases used by other individuals, including other patients in a hospital ward, making diagnosis even more difficult.

Other psychotic disorders:

The tendency found in individuals with Aspergers to sensitivity and over-generalization of the fact that they are criticized and made fun of may, if present in marked form, be mistaken for a paranoid psychosis. Those who are pre-occupied with abstract theories or their own imaginary world may be said to have delusions or hallucinations. One boy, for example, was convinced that Batman would arrive one day and take him away as his assistant. No rational argument could persuade him otherwise. This type of belief could be called a delusion, but is probably better termed an 'over-valued idea'. It does not have any specific diagnostic significance, since such intensely held ideas can be found in different psychiatric states.

Severe social withdrawal, echopraxia and odd postures may be noted. These may become more marked at times, and then they could be regarded as catatonic phenomena. Such catatonic symptoms can be associated with various conditions (including encephalitis) and, on their own, should not be considered as indicative of schizophrenia.

Obsessional neurosis:

Repetitive interests and activities are part of Aspergers, but the awareness of their illogicality and the resistance to their performance characteristic of the classic case of obsessional neurosis are not found in the former It would be of interest to investigate the relationship between Aspergers, obsessional personality, obsessional illness, and post-encephalitic obsessional conditions.

Affective conditions:

The quietness, social withdrawal, and lack of facial expression in Aspergers might suggest a depressive illness. Shyness and distress when away from familiar surroundings could make an anxiety state a possible diagnosis, or excited talking about a rather fantastic grandiose, imaginary world might bring to mind hypomania. However, the full clinical picture and the early developmental history should clarify the diagnosis.

More difficult problems occur when affective illnesses are superimposed on Aspergers. Then a double diagnosis has to be made on the history and present state.

Early childhood autism:

Asperger acknowledged that there were many similarities between his disorder and Kanner's early infantile autism. Nevertheless, he considered they were different because he regarded autism as a psychotic process, and his own disorder as a stable personality trait. Since neither psychotic process nor personality trait has been defined empirically, little more can be said about whether they can be distinguished from each other.

Van Krevelen (1971) and Wolff & Barlow (1979) agreed with Asperger that his disorder should be differentiated from autism. They differ in their accounts of the distinguishing features and the impression gained from their papers is that, although there are some differences, the disorders are more alike than unalike. The variations could be explained on the basis of the severity of the impairments, though the authors quoted above would not agree with this hypothesis. Thus the autistic youngster, at least when young, is aloof and indifferent to others, whereas the youngster with Aspergers is passive or makes inappropriate one-sided approaches. The former is mute or has delayed and abnormal speech, whereas the latter learns to speak with good grammar and vocabulary (though he may, when young, reverse pronouns), but the content of his speech is inappropriate for the social context and he has problems with understanding complex meanings. Non-verbal communication is severely impaired in both conditions. In autism, in the early years, there may be no use of gesture to communicate.

In Aspergers there tends to be inappropriate use of gesture to accompany speech. In both conditions, monotonous or peculiar vocal intonation is characteristic. The autistic youngster develops stereotyped, repetitive routines involving objects or individuals (for example, arranging toys and household objects in specific abstract patterns, or insisting that everyone in a room should cross the right leg over the left), whereas the person with Aspergers becomes immersed in mathematical abstractions, or amassing facts on his special interests. Abnormal responses to sensory input - including indifference, distress and fascination - are characteristic of early childhood autism and form the basis of the theories of perceptual inconstancy put forward by Ornitz & Ritvo (1968) and of over-selectivity of attention suggested by Lovaas et al (1971). These features are associated with greater severity of handicap, and lower mental age. They are not described as typical of Aspergers, and they are rarely seen in older autistic individuals with intelligence quotients in the normal range.

The one area in which this type of comparison does not seem to apply is in motor development. Typically, autistic kids tend to be good at climbing and balancing when young. Those with Aspergers, on the other hand, are notably il1-co-ordinated in posture, gait and gestures. Even this may not be a particularly useful point of differentiation, since kids who have typical autism when young tend to become clumsy in movement and much less attractive and graceful in appearance by the time of adolescence (see DeMyer, 1976, 1979 for a discussion of motor skills in autism and autistic-like conditions).

Bosch (1962) considered that Aspergers and autism were variants of the same condition. This author pointed out that, although Asperger and Van Krevelen (1971) listed features in the early history which they thought distinguished the two conditions, in practice these did not cluster into two groups often enough to justify the differentiation. The youngster in Appendix No. 6 illustrates this problem (see also Everard 1980).

Classification—

Asperger regarded the disorder he described as a disorder of personality that could be distinguished from other types of personality abnormalities although he recognized the similarities to early childhood autism. Wolff & Barlow (1979) argued that it should be classified under the heading of schizoid personality. In support of this view, Wolff & Chick (1980) reviewed the literature in which schizoid characteristics are described. As discussed above, the disorder can be placed in this group, and further work in this field would be of interest, but, at the moment, classification under this heading has no useful practical implications. Although Wolff & Chick have listed five features, operationally defined, that they regard as core characteristics of schizoid personality, this term, as generally used, is so vague and ill-defined a concept that it covers a wide range of clinical pictures in addition to Aspergers. The aim should be not to enlarge, but to separate sub-groups from the broad category and thus to increase diagnostic precision.

Furthermore, the word schizoid was originally chosen to underline the relationship of the abnormal personality to schizophrenia. The latter can occur in a person with Aspergers, but, as already discussed, there is no firm evidence of a special link between Aspergers and schizophrenia, strictly defined. To incorporate such an untested assumption into the name of the condition must give rise to confusion.

The reasons for personality variations are so obscure that classifying Aspergers under this heading does not lead to any testable hypotheses concerning cause, clinical phenomena, pathology or management. A more limited, but more productive, view of the problem is to consider it as a consequence of impairment of certain aspects of cognitive and social development.

As mentioned above, Wing & Gould (1979) carried out an epidemiological study of all mentally or physically handicapped kids in one area of London, in an attempt to identify all those with autism or autistic-like conditions, whatever their level of intelligence. The results confirmed the following hypothesis. Certain problems affecting early youngster development tend to cluster together: namely, absence or impairment of two-way social interaction; absence or impairment of comprehension and use of language, non-verbal as well as verbal; and absence or impairment of true, flexible imaginative activities, with the substitution of a narrow range of repetitive, stereotyped pursuits. Each aspect of this triad can occur in varying degrees of severity, and in association with any level of intelligence as measured on standardized tests.

When all kids with this cluster of impairments were examined, it was found that a very few resembled the description given by Asperger and some had typical Kanner's autism. A number could, tentatively, be classified as having disorders described by authors such as De Sanctis (1906, 1908), Earl (1934), Heller (see Hulse, 1954) and Mahler (1952), although the definitions given by these writers were not precise enough for easy identification. The remainder had features of more than one of these so-called disorders and under the general, but unsatisfactory, heading of early childhood psychosis. The justification for regarding them as related is that all the conditions in which the triad of language and social impairments occurs, whatever the level of severity, are accompanied by similar problems affecting social and intellectual skills. Furthermore, individuals with the triad of symptoms all require the same kind of structured, organized educational approach, although the aims and achievements of education will vary from minimal self-care up to a university degree, depending on the skills available to the person concerned.

This hypothesis does not suggest that there is a common gross aetiology. This is certainly not the case, since many different genetic or pre-, peri- or post-natal causes can lead to the same overt clinical picture (Wing & Gould, 1979). It is more likely that all the conditions in which the triad occurs have in common impairment of certain aspects of brain function that are presumably necessary for adequate social interaction, verbal and non-verbal communication and imaginative development. It is possible that these are all facets of one underlying in-built capacity - that is, the ability actively to seek out and make sense of experience (Ricks & Wing, 1975). Included in this would be the innate ability to recognize other human beings as distinct from the rest of the environment and of special importance. If this basic skill were diminished or absent, the effects on development would be profound, as is the case in all early childhood psychoses.

The full range of clinical material can be sub-divided in many different ways, depending on the purpose of the exercise, but no aetiological classification is possible as yet. Sub-grouping on factors such as level of intelligence (Bartak & Rutter, 1976) or on degree of impairment of social interaction (DeMyer, 1976; Wing & Gould, 1979) has more useful practical implications for education and management than any based on the eponymous disorders mentioned above.

In the light of this finding, is there any justification for identifying Aspergers as a separate entity? Until the aetiologies of such conditions are known, the term is helpful when explaining the problems of kids and grown-ups who have autistic features, but who talk grammatically and who are not socially aloof Such individuals are perplexing to moms and dads, educators and work supervisors, who often cannot believe in a diagnosis of autism, which they equate with muteness and total social withdrawal. The use of a diagnostic term and reference to Aspergers clinical descriptions help to convince the individuals concerned that there is a real problem involving subtle, but important, intellectual impairments, and needing careful management and education.

Finally, the relationship to schizophrenia of Aspergers, autism and similar impairments can be reconsidered. Although they are dissimilar in family history, childhood development and clinical pictures, both groups of conditions affect language, social interaction and imaginative activities. The time of onset and the nature of the disturbances are different, but there are similarities in the eventual chronic defect states that either may produce. It is not surprising that autism and schizophrenia have, in the past, been confused. Progress has been made in separating them and it is important to continue to improve precision in diagnosis, despite the many difficulties met in clinical practice.

Management and education—

There is no known treatment that has any effect on the basic impairments underlying Aspergers, but handicaps can be diminished by appropriate management and education.

Both kids and grown-ups with Aspergers, like all those with the triad of language and social impairments, respond best when there is a regular, organized routine. It is important for moms and dads and educators to recognize the subtle difficulties in comprehension of abstract language, so that they can communicate with the youngster in ways he can understand. The repetitive speech and motor habits cannot be extinguished, but, with time and patience, they can be modified to make them more useful and socially acceptable. Techniques of behavior modification as used with autistic kids can possibly be helpful if applied with sensitivity. However, Asperger (1979) expressed considerable reservations about using these methods with kids with his disorder who are bright enough to be aware of and, as Asperger put it, 'to value their freedom'.

Education is of particular importance because it may help to develop special interests and general competence sufficiently to allow independence in adult life. The teacher has to find a compromise between, on the one hand, letting the youngster follow his own bent completely, and, on the other, insisting that he conform. She also has to ensure that he is not teased and bullied by the rest of the class. There is no type of school that is particularly suitable for those with Aspergers. Some have performed well in schools for normal kids, while others have managed better in schools for various kinds of handicaps. Educational progress depends on the severity of the youngster's impairments, but also on the understanding and skill of the teacher.

Most individuals with Aspergers who settle in open employment have jobs with a regular routine. They also have sympathetic employers and workmates who are willing to tolerate eccentricities. In many instances, work has been found by moms and dads who persevere in approaching employers, despite all the difficulties.

Finding appropriate living accommodation also presents problems. Living with moms and dads is the easiest solution, but cannot last forever. Hostels or lodgings with a helpful landlady are the most usual answer. Tactful supervision may be needed to ensure that rooms are kept clean and tidy and clothes are changed regularly.

Superimposed psychiatric illnesses, if they occur, should be treated appropriately. Emotional distress in adolescents and young grown-ups due to partial insight may be reduced to some extent by counseling from someone who has a full understanding of the disorder. Such counseling consists mainly of explanation, reassurance and discussion of fears and worries. The counselor has to adopt a simple and concrete approach in order to stay within the limits of the client's understanding. Psychoanalysis, which depends upon the interpretation of complex symbolic associations, is not useful in this condition.

Moms and dads, in their youngster's early years, are usually confused and distressed by his strange behavior. They need a detailed explanation of the nature of his problems if they are to understand and accept that he is handicapped.


Appendix—

Case histories:

As mentioned above, the following case histories are those of individuals who have been referred to psychiatric services. The high achievers mentioned by Asperger (1944) are not represented.

Case l

This is a typical example of the disorder.

Mr K.N. first presented as a psychiatric out-patient when he was aged 28, complaining of nervousness and shyness.

As a baby he was always placid and smiling and rarely cried. He used to lie in his pram for hours, laughing at the leaves on the trees. His mother remembered he did not point things out for her to look at, in contrast to his sister. He continued to be quiet and contented as a toddler. If other kids took his toys he did not protest. Walking was somewhat delayed and he was slow in acquiring self-care skills, though not enough for his moms and dads to worry.

He began to talk around one year of age. He had several words at this time, but, after seeing and hearing a car crash which startled him, he stopped talking and did not begin again until he was three years old. His moms and dads thought his understanding of speech was normal. K. developed good grammar, though he referred to himself in the third person till 4-5 years old. He has never been communicative. Even as an adult he gives information only if questioned and then replies as briefly as possible. His facial expression and gestures are limited, and his voice is monotonous.

As a youngster he was attached to his mother, he never made any friends, and he was much teased at school. He remains a shy and socially isolated person though he would like to be able to make social contacts.

K. had no stereotyped movements, but has always been ill-coordinated and very poor at games. He does not swing his arms when he walks. He attended a private school and did well in subjects needing a good rote memory, such as history and Latin, but fell behind at the stage when comprehension of abstract ideas became necessary. He was in the army for a short time, but was not allowed to take part in marches and parades because of his clumsiness and inability to do the right thing at the right time. He was discharged because of these peculiarities.

K. did not object to changes imposed by others, but he was, and still is, orderly in his own daily routines and in arranging his own possessions.

From early in his life he liked toy buses, cars and trains. He amassed a large collection and would notice at once if a single item were missing. He would also make models with constructional kits. He played with such toys, on his own, for as long as he was allowed to continue. He had no other pretend play and never joined in with other kids. The interest in means of transport has remained with him. In his spare time he reads factual books on the subject, watches cars and trains and goes on trips to see trains with fellow train-enthusiasts. He has no interest in fiction or any other type of non-fiction.

K. has been employed for many years in routine clerical work. He enjoys his job and his hobby, but is very sad and anxious because he is aware of his own social ineptness and would like to have friends and to marry. He writes many letters to advice columns in magazines, hoping for help with these problems. His concern over what he terms his 'shyness' finally made him ask for help from a psychiatrist.

The WAIS gave K. an IQ in the dull normal range, with similar verbal and non-verbal scores. He was particularly poor at sub-tests needing comprehension of a sequence of events.

Case2

The second case history is also typical, but complicated by severe depression with onset in early adult life.

Mr L.P. was admitted to a psychiatric hospital at age 24 because of a suicide attempt. He was born four weeks premature and had feeding problems in the first week or two. He was an easy, placid, rather unresponsive baby who rarely cried. He acquired motor and self-care skills, but his moms and dads later realized that he passed these milestones more slowly than his sister, though they did not worry at the time. His father had a vague premonition that there was something odd about L. but not enough to seek advice.

He did not begin to speak until he was three years old, but this was attributed to the fact that the family was bilingual. However, by the time he went to school he was speaking in long, involved, pedantic sentences that sounded as if they had come from books. He tended to interpret words in odd ways. For example, when hearing someone described as 'independent' he thought this meant they always jumped in at the deep end of the swimming pool. He still takes jokes very seriously. He used to ask the same questions over and over again, regardless of the answers he was given. He did not initiate or join in conversations except by repetitive questioning.

L. remained placid and obedient throughout his childhood. He rarely initiated any activity, but waited to be told what to do. As a small youngster he used to rock himself when unoccupied. He had no imaginative play. He went to normal school, but did not join in with the other kids and had no friends until he was about 14 years old. Then he did begin to mention one or two companions and referred to them as friends, but has lost touch since.

He was bullied at school and remembers it as an unhappy time.

L. has always been concerned that his possessions should be orderly and that the daily routine should be followed exactly.

He is poor at games needing gross motor skills and at tasks requiring hand-eye co-ordination. His posture and gait are markedly odd. His face has a faintly bewildered expression that rarely changes. He uses large, jerky, inappropriate gestures to accompany speech. The odd impression he conveys is exacerbated by his old-fashioned choice of clothing.

L.' s memory is excellent and this enabled him to pass exams in subjects that can be learnt by rote. He is a very good chess player and enjoys taking part in matches. He can read well and enjoys books on physics and chemistry, concerning which he has memorized a large number of facts. He is particularly interested in time. He wears two watches, one set at Greenwich Mean Time and one at local time, even when these are the same.

His major problem is his social ineptitude. He will, for example, go on talking about his special subjects despite the most obvious signs of boredom in his audience. He makes inappropriate, often quite irrelevant, remarks in company and appears gauche and youngsterish. He is painfully aware of his deficiencies, but is unable to acquire the skills necessary for social interaction. Nevertheless, he is kind and gentle and, if he realizes someone is ill or unhappy, he will be most sympathetic and do his best to help.

Since leaving school he has been employed as a filing clerk, and lives in a hostel.

L.'s moms and dads did not seek psychiatric help when he was a youngster, but he has been in contact with psychiatric services since reaching adolescence. On the first occasion he had become agitated because of worries about sex. On the second, he was anxious and losing sleep because of a minor change in his routine at work. On the third he was admitted as an in-patient following attempted suicide, once again precipitated by the possibility of re-organization in the office where he works. He tried to drown himself, but failed because he is a good swimmer. He then tried to strangle himself, without success. Commenting on this he said 'The trouble is I am not a very practical person'. At admission he was disheveled in appearance, deeply distressed and sad. His speech was painfully slow with long pauses between phrases. Its content was coherent, although, in his replies to questions, L. tended to add information that was correct, and related to the subject in hand, but not relevant in the context. For example, when asked about relations with his father L. said 'My father and I get on well. He is a man who likes gardening'.

L. blamed himself for all his problems, describing himself as an unpleasant person, whom no one could like and who could not manage his own life. He said he had heard individuals saying things about him such as 'L. is stupid', 'L. is a bad person', 'L. is a chemistry fanatic'. Careful questioning and subsequent observation showed that these were misinterpretations of overheard conversations and never occurred when L. was alone. For the first two admissions, the referring agency diagnosed an anxiety state, and for the third, schizophrenia. The final diagnosis was Aspergers complicated by anxiety and depression (not schizophrenia).

L. scored in the average range on the WAIS, his verbal being rather higher than his performance score, mainly because of his large vocabulary.

Case 3

The third case history is that of a boy where abnormality was recognized from infancy.

B.H. is aged 10. He was delivered by forceps and had difficulty with breathing and cyanosis after birth, remaining in special care for two weeks. He was a large, placid baby, who would lie without moving for long periods. He was not eager to use gestures, to clap or to wave goodbye. His mother was worried about him from the beginning, partly because of the difficult birth and partly because of his behavior.

His moms and dads were certain that he replied 'Yes' appropriately to questions at 11 months. At around 14 months he began to speak in a fluent, but incomprehensible 'language' of his own.

He made no effort to crawl, but one day, aged 17 months, he stood up and walked. He learnt to crawl after this.

He retained his own language until aged three years, when he started to copy clearly words he heard, and then went on to develop understandable speech. His comprehension of language has always lagged behind his expression. By the age of four he could read. His moms and dads said they did not teach him - he presumably learnt from the television. At the age of five he had a reading age of nine years, but his comprehension was poor.

In his early years, B. remained quiet and passive, showing little emotion of any kind. He seemed to prefer a regular routine, but did not react at all to changes. He was not demanding and gave no trouble.

B. did not develop imaginative pretend play at the usual age. At the age of about six years he became fascinated with means of transport, read all about them and learned all the technical terms. He enacts actions involving cars, airplanes and so on, but never with other kids.

He appears clumsy and ill-coordinated, has problems with buttons and laces, and is afraid of climbing.

B. attends a special school. When first admitted he ignored the other kids and carried on with his usual preoccupations. He appeared astounded when the teacher indicated that he should obey her instructions and follow the rest of the class. Gradually he began to fit in and to make active social approaches, though in a naive and inappropriate fashion. He has difficulty in following the rules of any game.

He speaks in a pedantic style, in an accent quite unlike that of his local environment. For example, he referred to a hole in his sock as 'a temporary loss of knitting'. Many of his phrases are, like this one, inappropriately adapted quotations from television or books.

B. is now aware of and sensitive to other individual’s criticism, but appears unable to learn the rules of social interaction.

When tested at age seven, he had a word recognition age of 12 years, scored at his age level on performance tasks, but was well below this on tests needing recall and comprehension of language.

Case 4

In the following example of the disorder, the diagnosis is complicated by a history of illness and psychological stress in early life, and by visual impairment.

Miss F.G. is aged 26. Pregnancy and delivery were normal, but F. had a series of illnesses and operations, including a subdural hemorrhage of unknown aetiology and correction of strabismus before the age of three years. She has poor eyesight and has to peer very closely to see, but can read, write and type.

F. talked fluently at an early age, and had a large vocabulary. Her moms and dads thought she was developing normally until the operation on her eyes at 2 1/2 years. Following this she was socially withdrawn for several months. No detailed description could be obtained, but her mother was quite certain that there was a marked change in behavior. Despite the problems of social interaction, F.'s speech remained clear, with good vocabulary and grammar. She always had a remarkable memory for anything she had heard or read, including any statistical information. F. gradually became more friendly and, by about three years of age, she was making social approaches to her moms and dads and others in the family. However, she did not interact much with other kids. She copied her mother's activities a little, but did not develop normal pretend play or social play.

Her main interests as a young youngster were drawing and, later on, reading. She also collected costume dolls, which she arranged in rows that must not be disturbed.

F. went to a normal comprehensive school. She loved history and geography, and would memories facts in these subjects with ease, but her teacher reported that she would do no work in any subject that did not interest her, such as mathematics.

She was accepted at school but recognized as odd. Her conversation contained many long quotations from books and she also often made irrelevant remarks.

F. was never good at practical tasks. Her moms and dads tended to do things for her. They found that, if they asked her to do some task, she would begin, but soon stop and turn to her own preferred activity - usually reading a book.

After leaving school she obtained work as a typist. She proved an excellent copy typist and was outstandingly accurate at spelling. She made no friends with the other members of staff. After four years the pressure of work increased. F. became distressed and unable to cope. She left work and has been unemployed for three years. During this time she has been anxious and agitated and unable to do anything on her own. She spends her time reading and amassing facts. She tends to have childish temper tantrums if thwarted in any way.

The WAIS showed that F. had a verbal score in the average normal range, but performance was very much lower, being in the mildly retarded range. The verbal skills depended on her good vocabulary. She did poorly on any task where the elements bad to be organized into a coherent whole.

Case 5

This is the history of a young man who showed the features of Aspergers, but who was mentally retarded and did not achieve independence as an adult.

Mr J. G. is aged 24 and attends a training centre for mentally retarded grown-ups. J. was a quiet, unresponsive baby. He began to say a few words at the age of two, but did not walk until 21/2 years old. At first he echoed, used phrases repetitively and had poor pronunciation. He learnt to read at the age of 51/2 and always did well on reading tests, though his comprehension was poor. He knew many unusual or technical words, such as 'aeronautical' and 'pterodactyl' but would be puzzled by familiar ones such as 'yesterday'.

He was not aloof, but gentle and passive, tending to stand and watch other kids, wanting to join in but not knowing how. He was very affectionate towards his own family. At age 24 he is still unable to interact socially, though is happy to be a passive member of a group.

He is clumsy in gait and posture and slow on tests of manual dexterity. J.'s special interests are music and cars. He can recognize any make of car, even if shown only a small part of the whole vehicle.

He attended a special school for mentally retarded kids. He was described by his teacher as 'showing no initiative'. He was eventually placed in an adult training centre near his home, where he is happily settled.

His WAIS score at the age of 17 was on the borderline between mild and severe retardation, with the verbal level being very slightly better than the performance. His reading age was still well in advance of all other skills.

Case 6

The following case history is of a boy who at first was classically autistic and later developed the characteristics of Aspergers.

C.B. is aged 13. His mother dates C.'s problems from the age of six months when his head was accidentally bruised. From this time he became socially aloof and isolated, and spent most of his time gazing at his hands which he moved in complicated patterns in front of his face. At one year old he began to watch the passing traffic, but still ignored individuals. He continued to be remote, with poor eye contact, until five years of age. He passed his motor milestones at the usual ages and, as soon as he was physically able, he spent hours running in circles with an object in his hand, and would scream if attempts were made to stop him. At the age of three he began to be able to recognize letters of the alphabet and rapidly acquired skill at drawing. He then drew the salt and pepper pots, correctly copying the names written on them, over and over again. For a time this was his sole activity. Following this he became fascinated with pylons and tall buildings and would stare at them from all angles and draw them.

He did not speak till the age of four, then for a long time used single words. After this, he acquired repetitive phrases and reversed pronouns. C. had many stereotyped movements as a young youngster, including jumping, flapping his arms and moving his hands in circles.

After the age of five, C.'s speech and social contact markedly improved. He attended a special school until aged 11, where they tolerated a range of bizarre, repetitive routines. At one point, for example, he insisted that all his class and the teacher should wear watches that he had made from plasticine before lessons could begin. Despite all the problems, he proved to have excellent rote memory, absorbed all that he was taught, and could reproduce facts verbatim when asked. C. was transferred to a normal comprehensive school at the age of II - He has good grammar and a large vocabulary, though his speech is naive and immature and mainly concerned with his own special interests. He has learnt not to make embarrassing remarks about other individual’s appearances, but still tends to ask repetitive questions. He is not socially withdrawn, but he prefers the company of grown-ups to that of kids of his own age, finding it difficult to understand the unwritten rules of social interaction. He said of himself, 'I am afraid I suffer from bad sportsmanship'. He enjoys simple jokes but cannot understand more subtle humor. He is often teased by his classmates.

His main interest is in maps and road signs. He has a prodigious memory for routes and can draw them rapidly and accurately. He also makes large, complicated abstract shapes out of any material that comes to hand, and shows much ingenuity in ensuring that they hold together. He has never had pretend play but is deeply attached to his toy panda to which he talks as if it were an adult when he needs comfort.

His finger dexterity is good, but he is clumsy and ill-coordinated in large movements and therefore is never chosen by the other kids for sports and team games.

C. is of average intelligence on the WISC, with better verbal than performance skills. He does well on tasks needing rote learning, but his educators are deeply puzzled and concerned about his poor comprehension of abstract ideas and his social naivety. They find him appealing but sadly vulnerable to the hazards of everyday life.


My Aspergers Child: Preventing Meltdowns in Aspergers Children


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