Volume 12, Issue 1, Pages 143-163 (January 2003)

The challenge of adolescents and adults with Asperger syndrome

By Digby Tantam

Article outline

Challenge 1: who is responsible for helping adolescents and adults with Asperger syndrome?

Challenge 2: how much of a service do we need to provide?

Challenge 3: social exclusion

Challenge 4: working with caregivers

Challenge 5: diagnosis in adulthood

Challenge 6: why make a diagnosis?

Challenge 7: the challenge of comorbidity

Challenge 8: people with AS as aggressors and not just victims

Acknowledgements

References

Copyright

 

Despite the rapid growth of interest in Asperger disorder in children, there continues to be a lack of awareness of the diagnosis and its implications for adolescents and adults. The reasons for this lack of awareness lie in the history of the disorder and in the historical development of mental health services. Because, as Santayana wrote, “Those who cannot remember the past are condemned to repeat it,” this article reprises some of the history given elsewhere in this volume, but in a highly partial way, to bring out what the author believes to be the historically grounded prejudices that are the first challenge to anyone wanting to help adolescents and adults with Asperger syndrome.

The diagnosis of Asperger syndrome (AS) is more than 50 years old, nearly as old as autistic disorder. The year of 1943 saw the publication of Kanner's description of autistic disturbances in children [1], and 1944, Asperger's paper on autistic personality disorder [2]. Asperger, like Kanner, worked with children, and his paper, like Kanner's, was about children. It had no impact on the English-speaking world for almost 40 years and was only published in an English translation in 1991 [3]. The 15 years after Kanner's paper was published saw considerable debate about the validity of autistic disorder, the development of a variety of standardized diagnostic criteria, and the overthrow, at least in the United Kingdom and the United States, of psychogenic theories of autism. There was considerable anxiety about the possibility of criteria for a diagnosis of autism becoming too lax, and highly restricted research criteria were devised that could be applied to the first generation of epidemiologic studies, such as those of Lotter [4].

The development of research criteria coincided with the demarcation of autism and other neuropsychiatric, or neurodevelopmental disorders as they have come to be called in children such as developmental dyspraxia and speech and language disorders of childhood. The powerful influence of Jaspers lingered, however, and child psychiatrists, like their adult colleagues, made the distinction between brain and mind disorders their starting point. A corollary of this distinction was the assumption that disorders of the brain were fixed and, equally erroneously, disorders of the mind were considered plastic. Thus, although the recognition of neurodevelopmental disorders was an advance on assuming that children with communicative disorders were the victims of bad parenting, it was also assumed that little could be done to help children so affected.

Fortunately, this therapeutic nihilism motivated some parents to band together to find their own solutions, in particular to press for their children's educational needs to be met more effectively. United Kingdom parents founded the National Autistic Society in 1962 and United States parents the Autism Society of America in 1965. Both societies focused their efforts on education, understandably, as it was their children's needs with which the founders were concerned. The success of their efforts to get special education established has contributed to the statutory recognition in North America and in the United Kingdom that children with special needs have a right to have those educational needs systematically assessed with a presumption that any identified educational needs would be met.

Parents who believed that they had secured their children's future by establishing programs for their education discovered that their children continued to have considerable needs once school-leaving age was reached. Parents began to turn their attention to creating suitable communities for these children, extending and building on the experiences that had grown from the schools. It seemed like a natural progression. Most of the children were severally impaired and their awareness of themselves with other people was much diminished. They thrived if they had caring and understanding parental figures at the age of 15 or 25 years just as much as they had at the age of 5 years.

This period can be said to have ended and a new period begun with the publication in the late 1970s and early 1980s of papers bringing the attention of English-speaking professionals back to AS. These included the paper by van Krevelen and Kuipers [5], the transcription of a paper given to the United Kingdom National Autistic Society by Asperger himself [6], and most influentially, by a paper published in Psychological Medicine by Lorna Wing [7]. The impact of the renewal of interest in AS criteria of autistic personality disorder, and of Lorna Wing's introduction of the eponymous term AS, or Asperger disorder as it is known in the United States, has been to refocus attention on the conditions similar to autism [8] that had been excluded by earlier research-oriented criteria. The response of the nosologists who have such an influence on psychiatry was to move in two directions at once. First, to import Wing and Gould's triad of social impairments into the list of diagnostic criteria of autistic disorder, thus considerably widening their scope. Second, to add AS, defined completely arbitrarily, as a separate, named syndrome, although almost everyone who met the criteria for AS also met the widened criteria for autistic disorder [9].

Professionals are now reaping the confusion that this has sown, with repeated and fruitless attempts to distinguish AS from autistic disorder. But what was a taxonomic blunder has proved to be a practical success. Parents and caregivers know that there are some people with autism who lack sufficient self- and other-awareness to be autonomous, but there are others who demand that their autonomy is recognized. The author tried to capture this difference when writing a booklet on AS by calling it “A Mind of Their Own” [10]. What parents and caregivers have done is to ignore the stipulations in ICD-10 and DSM-IVTR that people with AS are those people with an autistic spectrum disorder but no delay in their cognitive or language development. Instead, they have simply equated AS with self-awareness. Many of the children and adults diagnosed with autistic spectrum disorders in the past seemed lost in their own world. They seemed not to register pain or danger, as if they did not have sufficient sense of themselves to be able to be concerned about their own welfare or survival. People with AS do not live in their own world so much as live on their own island floating in a sea of humanity. They do have projects and plans for themselves, and they do compare themselves with other people, often painfully.

The author believes that parents and caregivers have been right in giving AS this operational definition. They are right because people with AS often suffer emotionally because of their self-awareness, and because increasing self-awareness and its attendant distress often occur in adolescence in association with an improvement in communicative ability.

AS has not been so popular a label in North America as in Europe. In the United States, many professionals have advocated the term “high-functioning autism” as an alternative [11]. This term has the advantage that it is not pegged to official diagnostic criteria, but the disadvantage is that it suggests the issue is “functioning.”

“High functioning” is not so different from the “less severe” tag that is often given to people with AS, as in the question often put to the author by colleagues, “AS? Isn't that a less severe kind of autism?” The concept of functioning is a familiar one to service managers, especially in the learning difficulty/mental handicap field. There is a clear analogy with high and low IQ. The reason that function is so familiar, and so important, is that it is a divide between the services for people with learning difficulty/mental handicap, and other services. Lower functioning people, people with an IQ less than 70, are their responsibility. Other people with autistic disorder are the responsibility of…someone else.

Continuing pressure from caregivers has resulted in some special education programs being developed for children with AS, but in many areas of North America and the United Kingdom, high functioning means mainstream school with little or no additional support. This is changing, as documented elsewhere in this volume. But what is not changing is that the high functioning adolescent finds that on leaving school, no support is available from pediatric services, from child and adolescent psychiatry, and, because he or she is high functioning, from learning disability services, either.

It is a healthy sign that, in the last 10 years, autistic spectrum disorders have become detached from learning difficulty and now are seen as a new kind of problem, the pervasive developmental disorder. It has been particularly good for people with AS, because few of them feel comfortable with services that grant them little autonomy. Indeed, people with AS are often particularly demanding that services are configured around them, rather than them fitting into the service.

But the outcome of the vicissitudes in the recent history of autism, some of which have been considered here, is that adolescents and adults with AS may have no call on specialist services at all. Many psychiatrists seem to take the view, as one local psychiatrist did in a recent letter, that a person with a known diagnosis of AS has “no mental health problem” to be detected. Third-party payers focusing on more and more defined targets are partly to blame. In the United Kingdom, where there is one overwhelmingly large third-party payer, the National Health Service (NHS), recent papers in the modernization agenda for the NHS have defined the priority conditions for mental health [12] and for learning difficulties [13] and have left AS out of them both. Although the United States has no comparable national policy, individual states are in a similar situation as the United Kingdom. Connecticut admits that it “has no principal state agency assigned the role of coordinating and delivering services and supports for adults with developmental disabilities, who do not have mental retardation” and that “The Department of Mental Health and Addiction Services (DMHAS) is the single state agency for providing comprehensive mental health and substance abuse services throughout Connecticut…DMHAS provides services to persons with developmental disabilities only if there is a concomitant psychiatric disorder” [14]. Massachusetts has not even gotten that far. A bill has been introduced (for details, see (http://www.state.ma.us/mddc/legislative/) ), arguing, “Many adults with Autism Spectrum Disorder do not meet DMR eligibility requirements despite the debilitating nature of their disability. This bill would establish a study commission that will (1) define the population to be served, (2) identify the types of services and supports needed, (3) identify how such services and supports can best be delivered, and (4) identify the costs for such services and supports. This information would be used to address these unmet needs.” At the time of writing, it has not been enacted.

There have been some exceptional developments, contrary to this trend, emanating from universities and nonstatutory providers. Supported employment has been one of the success stories, with schemes in several countries based on the blueprint developed by the University of North Carolina's program Treatment and Education of Autistic and Related Communication Handicapped Children (TEACCH) in 1989. As before in the history of education developments for autistic children, however, services have been provided mainly by self-help, although this time it has been groups of people with Asperger syndrome, rather than their parents, who are answering the challenge. There has been no statutory or legally enforced acceptance of the responsibility to provide services.

Challenge 1: who is responsible for helping adolescents and adults with Asperger syndrome? Return to Article Outline

It is clear from the historical summary that, by default and by tradition, the answer to this challenge is “parents or other caregivers.” Parents readily accept this responsibility because they have felt responsible for their child since he (or less often, she) was born, or shortly thereafter. From the time, in fact, that they realized that their child was different and was in some way, albeit difficult to characterize, vulnerable to others' exploitation and influence.

Another answer might be “people with AS themselves.” It is true that more and more people with AS are discovering alternative methods to empowerment. The Internet has provided many of these, enabling people with AS to get in touch with each other by email, discussion groups, or through web pages. Even more helpfully, the net provides a means of communicating with others that emphasizes technology know-how and de-emphasizes the subtleties of social interaction, both of which are advantages for people with AS.

What is disturbing about this challenge, however, is that there is no professional group that has accepted responsibility. There are psychiatrists, neuropsychologists, clinical psychologists, educators, employment specialists, counselors, occupational therapists, and others who have made themselves into specialists. But there is no group that has accepted that AS is part of their mission. This means that parents and sufferers are constantly the subject of turf wars in which they find themselves being referred back and forth until someone takes responsibility for their care or until they give up and break contact with services altogether. The latter is an all too common outcome.

Autistic spectrum disorders, including AS, are neurobiologic disorders with a strong heritability. Twin studies suggest that genetic and environmental factors often may interact. Outcome is also influenced by social and emotional factors. They are, therefore, even more so than the psychiatrists' bread and butter—schizophrenia—disorders that require the combination of knowledge of brain development, environmental factors, and psychology.

Furthermore, there is an association between AS and psychiatric disorder. One recent study showed that 32% of adults with an autistic spectrum disorder had been diagnosed with a disorder, most commonly (56%), depression [15]. Although AS itself does not respond to medication, these conditions do. Indeed, appropriate medication is after the most relevant intervention.

Finally, a range of medical disorders is reportedly more common in AS. These include epilepsy; disorders affecting brain development in childhood, such as hydrocephalus, tuberous sclerosis, and neurofibromatosis; congenital perceptual disorders affecting early social interaction, such as congenital disorders of visual acuity and congenital causes of deafness; and disorders affecting motor control, such as myotonia and myopathy.

Given all these considerations, there is a strong case for psychiatrists to take responsibility for adolescents and adults with AS. And not just any psychiatrists, but the same psychiatrists who deal with other, presumptively neurodevelopmental, disorders such as schizophrenia.

A case also could be made for licensed psychologists having particular, relevant skills, however. Neuropsychologists are more attuned to dimensional disorders and are also more experienced in assessing cognitive disorders. Recent research on AS has shown that it results in several distinct functional difficulties, all of which affect social interaction, although in different ways. These are shown in the Table 1.

 

Table 1. The core syndrome of AS
Impaired non-verbal communication
Impaired speech but not language
Impaired intersubjectivity (theory of mind, empathy)
Anxiety
Idiosyncratic, stereotyped, asocial interests and activities
Need for predictability
Motor or sensorimotor impairment

 

Identical triplets with autistic spectrum disorders may be affected by their disorder very differently [16], despite sharing the same genotype. Making a diagnosis of AS is an essential step to appropriate intervention, but it is not sufficient. The individual profile of a person's cognitive difficulties is necessary, too, and here the skills of a clinical psychologist are particularly useful.

AS has a greater than chance association with several other developmental disorders, such as attention deficit/hyperactivity disorder, Tourette syndrome, dysexecutive syndrome, developmental dyspraxia, dyscalculia, and possibly some unusual disorders of volition, such as elective mutism and elective dysgraphia, in which a person has an inability to write. These associated disorders can profoundly affect education and later, life employment. Despite being obvious that a person has a marked impairment, it may not be obvious what the cause is, unless a person is tested. The reduction of working memory that leads to dysexecutive syndrome, often associated with “atypical AS” (see later discussion) is particularly difficult to detect clinically, as is the lack of empathy that is the central feature of atypical AS.

Obtaining a cognitive profile of an adolescent or adult with AS has three potential benefits. It can inform the patient when deciding about future occupation or employment. It can help them plan how they can work to overcome their own difficulties. And it gives credence to the fact they have difficulties.

One of the greatest problems faced by adolescents and adults with AS is that their impairments fall squarely in the interpersonal and motivational areas.

Care example

Hilda had worked as an administrator when her father was alive, but when the company closed and he died, she did not seek further work. She carried on living in the family home, which became more and more neglected. Hilda enjoyed novels, and was reading Tolstoy's War and Peace when the author met her, but she did not know who to contact to change a broken light fitting or how to change it herself. So she read by candlelight. Her neighbors thought her weird, and the various doctors who saw her found her uncooperative. They believed that she was simply unmotivated to change. Although none of them said it, there was a definite implication that she was lazy and difficult.

Hilda, and many other people with AS, continue to be dismissed by professionals as having moral failings, but not impairments. Sometimes, therefore, the biggest impact of having an abnormal MRI scan or abnormal psychometry is that professionals take the problem seriously.

But what is good for the professional is not always good for the sufferer. Adolescence is particularly a time of identity change and identity confusion. Adolescents, understandably, do not want to define themselves in terms of impairments, but in terms of aspirations and desires. In telling an adolescent that they have AS—and the author believes that the clinician should have considerable reservations about making a diagnosis and then keeping it from the patient—it is important to make this a facilitative and not a restrictive intervention. There is a balance to be struck between being seen as a person with difficulties and being seen as someone with all to play for in the future. Balance needs to be maintained in the family of the person with the AS and in the mind of the affected person. Too much emphasis on moral failings by parents or spouse, and the atmosphere becomes one of high “expressed emotion,” as unhelpful for people with developmental disorders as it is for people with schizophrenia. Too great an emphasis on cognitive deficits, however, may lead to overprotection and to the undermining of autonomy.

Neuropsychologists rarely need to consider whether a neuropatholigical abnormality is a deficit or an opportunity. But counselors and psychotherapists who work constantly within the room for maneuver that we all retain despite our heredity, our environment, and our life history. It matters to them and their clients whether an action is said to be due to obstinacy or perseverance, to impulsivity or spontaneity. Moral evaluation of this kind is especially important in adolescence. This is partly because the core Asperger impairment often improves somewhat in adolescence, and partly because emotional and social factors are particularly important then.

 

Care example

Alex was fascinated by fluid dynamics. He designed, built, and fitted a succession of farings to his bicycle that would cut down on wind resistance. He took immense pleasure in pelting down hills, feeling that his ingenuity had created the extra speed. But he was changing and his AS was becoming less overt. One day he noticed someone looking at him and, for the first time in his life, imagined what they were seeing when they looked at him. He thought he must look a sight. Over the next few months he became unwontedly depressed and irritable. His mother thought that he was deteriorating and asked for an urgent appointment with the psychologist who had diagnosed Alex. The psychologist said the problem was that Alex was improving neurodevelopmentally, but that this had created new and more painful emotional problems. Unfortunately his mother would not accept this, and went to see another practitioner who suggested megavitamin therapy.

Alex probably was judging himself, if the truth be told, according to the values that were upheld in his family. People with AS, however, are more often judged by society than by themselves, and they and their parents can come to feel that society is excessively judgmental. Indeed, many people with AS may identify with people that society considers evil, because such people are also marginalized. Peers are much more judgmental than either older or younger people. So adolescents, for whom peer relationships are paramount, face the greatest challenge in this respect.

The friction between the idiosyncrasies of people with AS and the social expectations placed on them only becomes more intense after childhood. Although there has been little evaluation of counseling in AS, the author's experience has been that it can be of particular value in adolescence by relieving distress and improving social functioning when this friction has led, as it often does, to anxiety, hostility, or depression. Counseling people with Asperger syndrome is specialized. Counselors need to have mastered the skills of their profession, and in addition, to have an understanding and experience of working with people with AS. There is little training currently available in how to modify counseling techniques to make them suitable for people with AS. Many counselors of people with AS are parents who have learned from their own experience how to communicate with a person with AS, and have gone on to do a counseling training.

Perhaps the single most important issue that counselors for people with AS deal with is accountability. Accountability is being able to give an account that satisfies others. That account often has various strands: contingency is one (“I couldn't help it; it just fell”); another is incapacity (“You know I'm deaf. How could I have heard what he said?”; and a third, intention (“I wanted to hurt him. So would you, if he'd done it to you”). Overplaying the “I couldn't help it” account leads to frustration in others and criticism. But one of the fundamental facts about AS is that a person cannot help having it. What matters, though, is what they do with it. By the time a person with AS reaches adolescence, he or she will have made many choices that may have made their situation worse or better. Overplaying the contingency card, however, much as it may tweak parents' heartstrings, is a choice that often makes the situation worse, and not simply because making one's parents feel guilty is rarely a good long-term strategy. Being the victim of circumstance means that a person is not an effective agent. Not being an effective social agent is something that people with AS feel a lot, particularly if they lack empathy for others. It leads to a sense of being socially powerless. This is a common feeling for adolescents with AS who have got into trouble at school or in the community. The adolescent finds that he or more rarely she has increasingly fewer effective means of influencing others except by more and more challenging behaviors.

Overplaying incapacity may not lead to a loss of others' esteem, but it certainly leads to a loss of one's own esteem. Claiming that one intends all the consequences of one's action is, however, also a risky strategy, because it can lead to obloquy and rejection.

 

Challenge 2: how much of a service do we need to provide? Return to Article Outline

The upshot of my consideration of the first challenge—who should be responsible for helping people with AS—is that no one profession has all the necessary skills. Teamwork is therefore necessary. But teams are even more expensive than individuals and in these cost conscious days, how much can we afford to spend on AS? How much should third-party payers and parents spend?

One kind of answer is to find out how prevalent AS is. As studies considered elsewhere in this issue have shown, there has been an inflationary spiral in the findings of prevalence studies. These studies have been carried out in children, but DSM-IVTR asserts, “Asperger disorder is a continuous and lifelong disorder.” Recent studies indicate that 1 in 150 children have a PDD and 1 in 350 have either Asperger disorder or PDD-NOS [17]. Fombonne has reached a more conservative estimate in a review of multiple studies of 1 in 500 children [18].

At the time of writing, the United States Census Bureau estimates the United States population to be 287,387,124 people, of whom 78.8% are 15 years of age or older. This means that, even at the more conservative estimate, if Asperger disorder is lifelong and continuous, there are at least half a million American adolescents and adults who have AS and, if we include the wider group of PDDs, perhaps as many as 1.5 million.

Asperger himself said that the syndrome he described had “a good prognosis,” if special education was provided. But it is not clear whether he meant that there are substantially fewer adolescents and adults with the disorder than there are children, or that adolescents and adults are better able to live with the impairment, or perhaps that other people are better able to live with them. Or perhaps he meant that once people leave school they disappear from sight, even though they remain as handicapped as before.

The data to weigh up these different possibilities simply are not available. What is clear from clinical experience, however, is that people with AS may present for the first time at almost any age. The author has seen six people over the age of 50 years, five men and one woman, who had never been diagnosed previously. What is also apparent from clinical experience is that presentation is more likely during a developmental crisis: relationship breakdown, redundancy, or child-rearing problems are common examples.

Until outcome data, or adult prevalence data, are available, the best guess is that, although AS rarely if ever completely remits, its impact on social or emotional functioning may fall below the threshold for presentation during late adolescence or early adulthood. The threshold may be exceeded again, however, under pressure from demands for new social adaptation arising in adulthood. People with AS may therefore present, or re-present, in adolescence and adulthood.

There have been few studies of the needs of autistic children and no systematic study of the needs of adults with AS. Two recent reports of nonrandom surveys conducted by the United Kingdom National Autistic Society, however, do provide relevant details. In Ignored and Ineligible (National Autistic Society, NAS, 2001) the authors report that 49% of adults with autism or AS still live at home with their parents, that 46% of people with AS were diagnosed only after the age of 16 years, and only 12% of high functioning adults are in fulltime employment. These figures are strikingly similar to the rates in the first 46 patients with AS that the author systematically studied between 1980 and 1983, of whom 9% were employed and 41% were living with parents [19]. This suggests that there has been little change in community support in the last 20 years, in the United Kingdom at least.

Another survey of the NAS (2000) involved people with AS prioritizing their own needs. There was general agreement that having a job and making friends were the first priorities, with a proportion also saying that having a sexual relationship was important. This survey is likely to have included only those people with a diagnosis. It is probable, as considered earlier, that there are many more people with AS who have not been diagnosed. Some of them only come to attention because of others' worries about them. Common sources of others' concern are forensic problems, neglect of children, and neglect of their homes and surroundings.

The author has noted already that there is an increased incidence of psychologic disorder in people with AS. In fact, people with AS may be more at risk than other people on the autistic spectrum. This certainly seems true of the risk for bipolar disorder [20].

Collating these facts suggests that the following people with AS have a need for service:

bullet

Those who want a diagnosis

bullet

Those who want help to live more independently

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Those who want help to find or maintain work

bullet

Those who want help to make or maintain friendships

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Those who want help to engage in a sexual relationship

bullet

Those who have an additional mental health problem

bullet

Those who present problems or concerns to others

 

Challenge 3: social exclusion Return to Article Outline

The first five items on this list begin with the expression, “Those who want …” People's wants are shaped by their understanding of what is available to them. They discover what is available through advertising, but also through word of mouth or through their general cultural understanding. The latter two sources of information may be denied people with AS who, as many parents and spouses often say, may live in a world of their own. Even when people with AS are not deliberately marginalized by others, they may be inadvertently excluded from many social resources, including access to appropriate health and social care. This lack of self-advocacy, coupled with the fact that AS, unlike psychosis or dementia, rarely causes public nuisance, means that it has been all too easy for services to assume that they do not need to provide for people with AS because adults with AS are not complaining about the lack of service. But their reason for not doing so is that they do not know they could benefit from it.

Challenge 4: working with caregivers Return to Article Outline

Children's interests are fiercely guarded by most parents. Only children with AS who are unfortunate enough to live in a dysfunctional family or lack parental care miss out. But parents are more loath to push for services for an adult child, and their reluctance is usually reinforced by the institutional resistance in adult services to dealing with parents. The preoccupation with individual rights and autonomy that has superseded the excessively paternalistic services of yesteryear means that psychiatrists and psychologists, more used to dealing with adults, often refuse to engage with parents or caregivers.

This has two immediate and unfortunate consequences. The first is that a developmental history is almost never taken. That a disorder has been lifelong is one of the simplest and most reliable means of differentiating it from an acquired disorder such as schizophrenia. The signs of AS often are most distinct in early childhood. Best diagnostic practice therefore requires that an appropriate developmental history is taken from parents or lifelong caregivers whenever possible.

Not dealing with parents means not taking a developmental history, and this usually has the consequence that a firm diagnosis is not made. But without a firm diagnosis, services are not provided. Not dealing with caregivers, however, may result in an even more basic breakdown in service provision. Services may simply refuse to engage with caregivers at all, perhaps telling a concerned parent or spouse that the person suspected of AS should contact them directly. This is unrealistic. Many intelligent people with AS do not even know what their source of income is or that having an appointment with a psychiatrist does not mean being admitted to a hospital. Asking them to know who to contact or how to ask for a service is asking too much.

Psychiatrists, psychologists, and others wishing to provide services to people with AS need to find ways of dealing with them and their caregivers. This requires a response to the ethical requirement of preserving autonomy and confidentiality that is different from that of other mental health problems. At the very least, it involves an assessment of the capacity of the adolescent or adult suspected of having AS to understand the issues involved, and an explicit negotiation about the issues within the limits posed by his or her capacity.

Challenge 5: diagnosis in adulthood Return to Article Outline

The diagnostic criteria of DSM-IV and ICD-10 incorporate Wing and Gould's triad of social impairments. These were developed in an epidemiologic survey of children [21], and they are less applicable to adolescents and adults. For example, the stereotypies, preoccupation with parts of objects and the lack of showing, bringing, or pointing out objects of interests—all features listed in DSM-IV—are signs of AS that usually disappear by adolescence. Other features, such as obsessive interests, a lack of peer relationships, and a lack of social and emotional reciprocity are shown by many “difficult” adolescents.

Because the expression of AS changes with age, a syndromal diagnosis in adulthood has to be made on the signs of the disorder in childhood—another reason for taking a developmental history. Parents may have died or the adult with AS may have moved away, however, and a developmental history may not be obtainable. How can a diagnosis be made then?

Before a diagnosis can be made, the diagnosis has to be suspected. The indices of suspicion in the DSM-IV criteria that are most useful are “failure to develop peer relationships appropriate to developmental level” and “apparently inflexible adherence to specific, nonfunctional routines or rituals.” What DSM-IV does not specify, surprisingly, is that AS has its onset in early childhood, although this is implied by its inclusion in the group of “disorders usually first diagnosed in infancy, childhood, or adolescence.” Gillberg is the only Asperger researcher who recognizes AS acquired after early childhood [22], but his criteria have proved over the years more inclusive than those of other experts.

Any psychiatrist confronted with an unusual problem in an adolescent or adult who cannot make relationships with peers, has apparently been socially isolated from early or middle childhood, and who has unusual routines, rituals, or obsessively pursued interests should suspect AS.

There are several psychiatric disorders other than AS that might present with these features. Routines and rituals can be the consequence of a combination of anxiety and social isolation. So they may occur in other conditions that have these two consequences, such as avoidant personality disorder, schizoid personality disorder, and early onset obsessive-compulsive disorder. Rituals also can be the result of social privation, and children who are neglected in infancy may develop these symptoms and they may sometimes persist [23].

What psychiatrists need for a confident diagnosis is to detect a specific impairment that is always and only associated with AS. Unfortunately, there is no expert consensus as to what this might be. The author's view is that we do know enough to say that the specific impairment is an abnormality of nonverbal communication, and the author uses this criterion in his own practice. It also appears in DSM-IV, where it is referred to as “marked impairments in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body posture, and gestures to regulate social interaction.”

Evaluating nonverbal communication may not be simple. Abnormal performance does not necessarily imply impaired competence. The author sometimes reads reports stating that person X cannot have Asperger disorder because they show eye contact. In fact, avoidance of eye contact is an indication of hostility, not of a PDD. Adolescents with PDDs, including people with autism, show a normal amount of other-directed gaze. They do not, however, preferentially direct their gaze to another's eyes when the other is looking at them, but evenly distribute other-directed gaze regardless of where the other person is looking or what they are doing [24]. People with AS may be told that they avoid gaze and try to compensate for this by increasing their total time looking at another person's eyes. This may increase the amount of shared gaze, but not the proportion of shared gaze to unshared gaze. The result may be a stare that can be as disconcerting as a lack of expected mutual gaze.

Even experienced clinicians need to take care in making inferences from simple observation of nonverbal communication. The author's practice is to ask parents about nonverbal communication and to make his own observations. It is also important to observe the patient in social settings other than the office if there continues to be doubt. A further problem is that although nonverbal expression is directly observable, the ability of a person to interpret other people's nonverbal expressions is not. Impaired nonverbal interpretation, for example, impaired interpretation of facial expressions, is one of the most durable findings in research into autistic spectrum disorders, but it is rarely noted in clinical assessments.

Because there is no single test or criterion of AS that can be applied easily, psychiatrists need to develop experience assessing people with AS before making the diagnosis for the first time. This can, and should, be provided in training. An alternative is to ask for people with AS to volunteer to participate in assessments. Even then the author would not advise psychiatrists to make the diagnosis in the absence of a developmental history until they feel confident that they are familiar with the variety of presentations of AS that may be bewildering at first.

There are several screening tests, some involving self-administered questionnaires (eg, the AQ [25]) that can be used to supplement diagnosis. Wired magazine has placed a copy of the AQ on the web for the benefit of “Geeks” (see (http://www.wired.com/wired/archive/9.12/aqtest.html) ). There also exist standardized developmental questionnaires (the one the author uses can be found at (www.dilemmas.org/development.htm) ) and symptom inventories. Past inventories often were too insensitive to pick up AS, but more recent inventories are more sensitive. Often they are, however, time-consuming to administer.

Psychiatrists who find adolescents and adults with AS congenial and who do develop diagnostic expertise will find that parents, spouses, and sufferers themselves will beat a path to their door as having a diagnosis.

Challenge 6: why make a diagnosis? Return to Article Outline

Diagnosis has traditionally been the route by which people with AS and their caregivers or supporters have accessed specialist services. But this tradition has grown out of the services for people with autism who were severely disabled by their condition under all circumstances. The group of people with AS, who Fitzgerald has argued [26] may have Wittgenstein, Newton, and Einstein among their number, include many people whose social impairment is arguable. Is a loner with a passionate interest in old diesel engines socially impaired? Is a timid father with an eccentric manner who is nevertheless devoted to his wife and child socially impaired? What about when his son is diagnosed with AS, and his wife begins to think of her frustrations with her husband during the marriage? Does he become socially impaired because he is suspected of having AS?

Checking off the boxes is not sufficient for making a diagnosis. Making a diagnosis has to result in a useful product for the patient. There is no hard and fast rule about whether a diagnosis of AS will be useful. A decision needs to be made in each case, usually following an open discussion about what benefits or costs the patient anticipates from a diagnosis. And the situation may change. Someone who is facing redundancy because he is acting strangely and whose routines at home are becoming a major source of harassment for his parents, may in a year or two be coping well and happily with another job and be a pleasant if eccentric house companion. Although a diagnosis might have been useful on the first occasion, it may be unhelpful on the second.

There are many other conditions in medicine that are dimensional and not categorical, and that may dip in and out of the pathologic range. Hypertension is one example. They require a different kind of management. The family physician must remember that his or her patient had a raised blood pressure once, and that it needs to be checked from time to time without treating the patient as if he or she has a current disorder. For psychiatric services dealing with people with AS, this translates into being able to maintain contact with adults with AS, perhaps over long periods and without specific treatment; or, alternatively, it translates into enabling people with AS to access services for themselves and giving them the means to decide when it is in their interest to do so. Of course, there has to be a service to access.

The author has noted that people with AS may need help particularly during developmental transitions and during crises. Specialist psychiatric help may not be needed at these times, although help from someone who is knowledgeable about AS and comfortable relating to people with AS is important. There are, however, some crises that call for specialist psychiatric or psychologic help. These include crises associated with psychiatric comorbidity and forensic problems.

Challenge 7: the challenge of comorbidity Return to Article Outline

There has been little systematic inquiry about psychiatric morbidity in AS after childhood (see Towbin, this issue). In the author's practice, a consecutive sample of 234 adolescent and adult patients had received the previous diagnoses shown in Table 2 (some diagnoses were duplicated). The diagnostic rate of schizophrenia is over-inflated because schizophrenia was the commonest diagnosis used to explain the symptoms of AS. Careful retrospective assessment of the cases in which this diagnosis had been made did not find evidence for schizophrenia independent of AS, although in two cases there had been an episode of brief psychosis associated with thought broadcast, and marked ideas of reference in one case.

 

Table 2. Previous diagnoses in personal series of 234 adolescents or adults with AS (note not all of these diagnoses were upheld retrospectively)
Previous diagnosis Rate
 
Anxiety and anxiety-related disorders 22.2%
 
 
Depression 19.7%
 
 
Obsessive-compulsive disorder 17.17%
 
 
Schizophrenia diagnosed previously 10.3%
 
 
Schizophrenia definite 0%
 
 
Mania 2.1%
 
 
Substance abuse 1.3%

 

OCD presents a similar problem. Routines or rituals associated with AS may be diagnosed as being evidence of OCD before the AS diagnosis is made. There were examples, however, of adolescents who developed typical OCD symptoms, such as repeated hand washing or obsessions to undo the possibility of future disasters, at or just before puberty. Other anxiety-related disorders developing then included dysmorphophobia, panic disorder, generalized anxiety disorder, and social phobia. Depression occasionally arose in the context of bipolar disorder, but generally in the context of anxiety.

Anxiety is perhaps the most universal and persistent disorder associated with all of the PDDs, so much so that it has been suggested in the past that it is a cause of autism [27]. The author does not believe this, but anxiety is strongly linked to PDD from an early age. The author's view is that people with AS live in a world that is more unpredictable and uncertain than it is for others whose intact nonverbal communication enables them to pick up patterns in social behavior. It is this uncertainty that produces anxiety, and not anxiety that causes AS. But it is certainly true that anxiety increases the social impairment that AS produces, by decreasing social skill performance and by increasing the frequency of any dysfunctional means that a person with AS might use in the face of anxiety. Repetitive questions, slowness, ritualizing, making social blunders, and aggression or irritability are all likely to worsen when a person with AS becomes anxious.

The usual range of treatments for anxiety also works for anxiety in the context of AS (see Myles, this issue). Counseling may be particularly effective. Although cognitive methods might be expected to be especially useful, this has not been the author's experience. Person-centered or existential methods [27,28] have the advantage that they address the situations about which the person with AS is concerned, however idiosyncratic those concerns might be to others.

Although substance misuse is less common in adolescents with AS than in nonaffected adolescents, it does occur. Drugs are often those that are readily available to someone who is not street-wise, usually alcohol or cannabis. Alcohol misuse may become a problem in older people with AS, too.

Challenge 8: people with AS as aggressors and not just victims Return to Article Outline

The history of PDD has been one of parents or caregivers pushing for recognition and help for PDD. People with AS, like other people with PDD, are regularly victimized and even more regularly misunderstood. Naturally, they and their parents feel that they are unjustly treated and inappropriately discriminated against. They are the victims of a society that puts a considerable premium on reciprocal social relationships.

Considering people with AS as aggressors seems to fall in with exactly the kind of stigma that has led to the injustice in the past. Aggression is a common problem, however, as parents will privately admit: out of 262 consecutive patients with AS that the author has seen, 40% of parents reported “hitting people” to be a problem.

Aggression in patients with AS can develop for different reasons. It can be:

  1. Retaliation

  2. Outrage

  3. A membership card in a deviant group

  4. A special interest

  5. Defensive

  6. Gaining ascendancy

 

Retaliation

Many people with AS have strict codes of behavior that often include a dislike or even hatred of violence. Even among them, however, aggression can be a problem when a person becomes frustrated, feels unfairly treated, or, more rarely, feels excluded. People with AS can persuade themselves that aggression is justified in these circumstances. Aggression toward younger siblings may be a problem, as may aggression at school, but the usual arena is at home.

This kind of aggression may be explosive, in which case there is often a sharp onset and a sharp offset. The person with AS may be even more unaware of the impact of their aggression than others who have temper tantrums. Spouses or parents may say that he or she, “calmed down immediately, long before we could feel calm. He just seems to want to carry on as if nothing had happened. If we try to talk about the tantrum, we might set him off again.” Tantrums of this kind may begin at an early age and parents find them difficult to deal with. Counter-violence makes matters worse, but it is a solution that often appeals to fathers. Withdrawal during the tantrum, and then discussing how it felt to be on the receiving end of it, are often useful, but living with this level of aggression can be one of the most difficult aspects of living with someone with AS.

People with AS have a lively sense of self-preservation. They may therefore suppress an aggressive response to a bully or another aggressor, but turn the aggression on to a more vulnerable person later, who may have had nothing to do with the situation. The target of aggression is most likely to be a person's mother, or, later in life, a spouse.

Emotional processing is difficult for people with AS. They cannot tell themselves to “just forget it” or “life's too short to worry so much.” They want answers and they want justice. An adolescent with AS who has a clinic appointment may start to worry about this for several days, and then may ask repeated questions about what will happen, the route to be taken, and so on. “Kicking off” may also happen during this period of heightened stress. Incidents that have happened in the past, sometimes many years before, may linger in the mind of an adult with AS and may resurface at regular intervals (“rumination”). When they do, it is as if the person is re-experiencing the episode over again and they may become suddenly and unexpectedly aggressive.

The unexpectedness of the timing and of the target of aggression makes risk assessment particularly difficult. Treatment also can be difficult because the person with AS, lacking empathy for others' reactions to their violence, may continue to feel that they were justified. When aggression is a symptom of irritability, treatment of an underlying mood disorder may be useful. In the rare cases in which aggression is an ictal symptom, anticonvulsants may be useful, and they also may be indicated in hypomania, as may lithium. Many colleagues use “mood stabilizing” drugs in the absence of a mood disorder, and the author has come across a few cases when this has been reported to be helpful. The author's impression, however, is that this is most often because it reassures the doctor and the caregivers that something is being done, rather than that the drug has a specific effect.

The level of aggression so far described is frightening and may lead to social isolation because parents are ashamed for friends and family to call at the house and see broken furniture or walls with holes punched in them. It rarely leads to criminal prosecution, however, although the author knows of one man who was convicted of attempted murder after he threatened his mother with a knife.

 

Outrage and uproar

There is a subgroup of people who have developmental histories typical of AS (Atypical Asperger Syndrome) but whose impairment of nonverbal interpretation is substantially greater than their impairment of nonverbal expression. These children may reach adolescence without any suspicion that they have a PDD. They often have learning difficulties that are picked up, such as dyslexia, dyscalculia, ADHD, and dysexecutive syndrome. Their social experience is of not fitting into the mainstream and of not being able to influence others. Both occur because empathy is essential for what Gilbert calls “social attraction power.”

Entering adolescence feeling lonely and powerless, struggling with learning difficulty, and having other people attribute both of these problems to personal shortcomings, are all unpleasant experiences. Two options often seem to present themselves: to become the class joker who is prepared to do the craziest things to be a member of the gang or to become outrageous. Outrage has the advantage that other people's reactions to it are extreme, and therefore easier to read. It also provides a sense of power, at least if others are distressed by it. It has the disadvantage that it rapidly leads to marginalization. Aggression is an easy route to outrage, although usually it is incidental to a wider strategy of disrupting a social situation. A young adolescent may just need to refuse to obey school rules, swear at the teacher, or knock down school furniture. As the person gets older, more serious acts may be necessary to produce outrage and these can involve aggression, although they are more likely to be sexual or to involve arson (see later discussion).

 

Membership card

The other option for someone with atypical AS is to ally themselves with other marginalized or disruptive children. By the time that such a person reaches adolescence, their group membership may be in jeopardy and they may have to behave more and more outrageously, and sometimes more and more aggressively. Aggression, however, is not usually the central method of staying in the group. This subgroup of people with AS may be engaged in other “normal” criminal and antisocial activities, like getting drunk, vandalism, and theft of property. These are typical misdemeanors of adolescence, but are not usual misdemeanors in people with AS. The person with AS who carries out these apparent typical crimes, however, and who does so in a group, is often different from other group members. He, and it is almost always a he, will often be egged on by the other members of the group to be the one who breaks the window or the one to drop the match. And, if property is stolen, the person with AS will rarely know what to do with it or how to profit from it.

 

Special interests

Some people with AS become fascinated with powerful others. This might be expressed through an interest in worldwide wrestling or martial arts training. The author has not personally come across a person with AS with a vicarious interest in violence who later became a perpetrator of violence themselves.

People with AS may have a special interest in fire that can lead to arson. There is often a period of covert fire setting in the garden or in a local wood that precedes the incident that comes to public attention. People with AS who have such an interest enjoy looking at fires and feel satisfaction from setting a fire. They may use fire-setting to escape a situation, for example, by setting a fire in a hospital ward, or they may use fires to pay back others. An interest in fire may persist for many years: 20 years in one of the author's patients.

Special sexual interests also may be a problem for people with AS and is described later.

 

Defensive aggression

Although there is no reason to suppose the families of people with AS are more troubled than those of anyone else, there is every reason to think they are as troubled. A person with AS who is brought up in a troubled family may have to fight back to defend themselves, and this aggression may spill out into other situations. There is one kind of defensive aggression, however, that occurs even in people with AS whose families of origin have been aggression-free. This is when aggression is intended to terminate an aversive stimulus, such as a high-pitched sound. The author knows of one man who tried to strangle a female child who was crying in a supermarket, because he could not bear the noise [29], and others who have become violent when hearing certain kinds of music. Aggression also may result if a person's belongings are upset or if they are interrupted in an activity that is important to them. An example of this is the 10-year-old boy who hit his sister with a baseball bat because she pulled the plug of the computer when he was immersed in a game. He broke his sister's arm, and still, some years later, thought that was justified.

 

Gaining ascendancy

Some of the most serious acts of aggression the author has come across are committed by the person with AS who feels so isolated and so powerless that they feel they have nothing to lose. In these circumstances, an act of violence that makes others take notice can become the stuff of daydreams and can then be translated into practice. There is usually some additional ingredient from the preceding list required. This kind of aggression often has a detached quality, almost like an experiment. Indeed, the person with AS may sometimes say, “I wanted to see what would happen.” An example of this is a young woman who lived with her father and his new wife, who had just born the father a child. This young woman was left to look after the baby and wanted to see what would happen if she mixed ground glass into the baby's feed, which she did.

 

Sexual deviation

Many people with AS manage to suppress their sexuality; those who do not often find it troublesome. Possibly because of the absence of a reference group, sexual interests may be unusual. Fetishes are not uncommon and may occasionally lead to forensic problems, as with the person who liked to impersonate doctors and ask women intimate questions about reproduction. People with AS rarely may get into trouble indecently exposing themselves, but this may turn out to be something that someone else (often a girl) put them up to. Men with AS may become addicted to adult internet sites, and a few the author knows have attracted police attention by downloading pictures of children. Young adolescents with AS may relate better to younger children than they do to their peers, and may occasionally make inappropriate sexual approaches to them. Older adolescents and adults may idealize childhood, and may be sexually attracted to children for that reason. Participation by people with AS in pedophile rings, indecent assault of children, or other serious sexual offence against children is rare, however, in the author's experience.

Stalking is the area in which the sex life of people with AS gives most cause for concern. “Crushes” are common in adolescence, and young men and women with AS often develop them. Although other adolescents are aware that their feelings are not going to be reciprocated, however, this may not be obvious to the person with AS who may become inappropriately attached. There is usually an initial phase during which the object of the attraction feels a bit flattered, a bit alarmed, and very caring toward the person who has become fixated on them. There may be phone calls at home, inappropriate notes, or statements made to others that lead the person who is the object of adoration to decide that enough is enough, however. There is usually a confrontation that is often clumsily handled because the object of adoration is frequently someone like a teacher or nurse who has a duty of care for the young person. The problems begin if this rejection is not accepted. The object of adoration may become an object of hatred and may be targeted with abusive calls or letters. His or her friends may be the victims of jealous attacks, and he or she may be followed.

The current climate means that any pedophile tendencies or any harassment of women (although not men) leads to a fierce reaction. It is therefore difficult to find evidence on which to base a risk assessment, as these situations are usually treated as high risk.

 

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Acknowledgements Return to Article Outline


The author is grateful to the many patients and caregivers who have taught so much about AS. Being able to get to know about their struggles and successes has been one of the most rewarding experiences of the author's professional life. The author is indebted to Emmy van Deurzen, whose ability to accept and work with difference has been an inspiration and who has consistently provided wise counsel.

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References

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