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 naı̈ve 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
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