The Complete Guide to Asperger's Syndrome

chapter 1

What is Asperger's Syndrome?

Not everything that steps out of line, and thus 'abnormal', must necessarily be 'inferior'.

- Hans Asperger (1938)

The door bell rang, heralding the arrival of another guest for Alicia's birthday party. Her mother opened the door and looked down to see Jack, the last guest to arrive. It was her daughter's ninth birthday and the invitation list had been for ten girls and one boy. Alicia's mother had been surprised at this inclusion, thinking that girls her daughter's age usually consider boys to be smelly and stupid, and not worthy of an invitation to a girl's birthday party. But Alicia had said that Jack was different. His family had recently moved to Birmingham and Jack had been in her class for only a few weeks. Although he tried to join in with the other children, he hadn't made any friends. The other boys teased him and wouldn't let him join in any of their games. Last week he had sat next to Alicia while she was eating her lunch, and as she listened to him, she thought he was a kind and lonely boy who seemed bewildered by the noise and hectic activity of the playground. He looked cute, a younger Harry Potter, and he knew so much about so many things. Her heart went out to him and, despite the perplexed looks of her friends when she said he was invited to her party, she was determined he should come.

And here he was, a solitary figure clutching a birthday card and present which he immediately gave to Alicia's mother. She noticed he had written Alicia's name on the envelope, but the writing was strangely illegible for an eight-year-old. 'You must be Jack,' she said and he simply replied with a blank face, 'Yes'. She smiled at him, and was about to suggest he went into the garden to join Alicia and her friends when he said, 'Alicia's birthday present is one of those special dolls that my mum says every girl wants, and she chose it, but what I really wanted to get her was some batteries. Do you like batteries? I do, I have a hundred and ninety-seven batteries. Batteries are really useful. What batteries do you have in your remote controllers?' Without waiting for a reply, he continued, 'I have a special battery from Russia. My dad's an engineer and he was working on an oil pipeline in Russia and he came home with six triple-A batteries for me with Russian writing on them. They are my favourite. When I go to bed I like to look at my box of batteries and sort them in alphabetical order before I go to sleep. I always hold one of my Russian batteries as I fall asleep. My mum says I should hug my teddy bear but I prefer a battery. How many batteries do you have?'

She replied, 'Well, I don't know, but we must have quite a few…', and felt unsure what to say next. Her daughter was a very gentle, caring and maternal girl and she could understand why she had 'adopted' this strange little boy as one of her friends. Jack continued to provide a monologue on batteries, how they are made and what to do with them when the power is exhausted. Alicia's mother felt exhausted too, listening to a lecture that lasted about ten minutes. Despite her subtle signals of needing to be somewhere else, and eventually saying, 'I must go and get the party food ready,' he continued to talk, following her into the kitchen. She noticed that when he talked, he rarely looked at her and his vocabulary was very unusual for an eight-year-old boy. It was more like listening to an adult than a child, and he spoke very eloquently, although he didn't seem to want to listen.

Eventually she said, 'Jack, you must go into the garden to say hi to Alicia and you must go now.' Her facial expression clearly indicated there was no alternative. He gazed at her face for a few seconds, as if trying to read the expression, and then off he went. She looked out of the kitchen window and watched him run across the grass towards Alicia. As he ran through a group of four girls, she noticed one of them deliberately put out her foot to trip him up. As he fell awkwardly to the ground, the girls all laughed. But Alicia had seen what happened and went over to help him get to his feet.

This fictitious scene is typical of an encounter with a child with Asperger's syndrome. A lack of social understanding, limited ability to have a reciprocal conversation and an intense interest in a particular subject are the core features of this syndrome. Perhaps the simplest way to understand Asperger's syndrome is to think of it as describing someone who perceives and thinks about the world differently to other people.

Although clinicians have only recently described these differences, the unusual profile of abilities that we define as Asperger's syndrome has probably been an important and valuable characteristic of our species throughout evolution. It was not until the late twentieth century that we had a name to describe such individuals. We currently use the diagnostic term Asperger's syndrome, based on the remarkably perceptive descriptions of Dr Hans Asperger, a Viennese paediatrician, who, in 1944, noticed that some of the children referred to his clinic had very similar personality characteristics and behaviour. By the mid-1940s, the psychological study of childhood in Europe and America had become a recognized and growing area of science with significant advances in descriptions, theoretical models and assessment instruments, but Asperger could not find a description and explanation for the small group of similar and unusual children that he found intriguing. He suggested the term Autistische Psychopathen im Kindesalter. A modern translation of the original German psychological term 'psychopathy' into current English terminology would be personality disorder - that is, a description of someone's personality rather than a mental illness such as schizophrenia.

Asperger was clearly entranced by children with autistic personality disorder and he wrote a remarkably perceptive description of the children's difficulties and abilities (Asperger 1944). He observed that the children's social maturity and social reasoning were delayed and some aspects of their social abilities were quite unusual at any stage of development. The children had difficulty making friends and they were often teased by other children. There were impairments in verbal and non-verbal communication, especially the conversational aspects of language. The children's use of language was pedantic, and some children had an unusual prosody that affected the tone, pitch and rhythm of speech. The grammar and vocabulary may have been relatively advanced but, at the end of the conversation, one had the impression that there was something unusual about their ability to have the typical conversation that would be expected with children of that age. Asperger also observed and described conspicuous impairments in the communication and control of emotions, and a tendency to intellectualize feelings. Empathy was not as mature as one would expect, considering the children's intellectual abilities. The children also had an egocentric preoccupation with a specific topic or interest that would dominate their thoughts and time. Some of the children had difficulty maintaining attention in class and had specific learning problems. Asperger noted that they often needed more assistance with self-help and organizational skills from their mothers than one would expect. He described conspicuous clumsiness in terms of gait and coordination. He also noted that some children were extremely sensitive to particular sounds, aromas, textures and touch.

Asperger considered that the characteristics could be identified in some children as young as two to three years, although for other children, the characteristics only became conspicuous some years later. He also noticed that some of the parents, especially the fathers of such children, appeared to share some of the personality characteristics of their child. He wrote that the condition was probably due to genetic or neurological, rather than psychological or environmental, factors. In his initial and subsequent publications and a recent analysis of his patient records for children he saw over three decades, it is apparent that he considered autistic personality disorder as part of a natural continuum of abilities that merges into the normal range (Asperger 1944, 1952, 1979; Hippler and Klicpera 2004). He conceptualized the disorder as a life-long and stable personality type, and did not observe the disintegration and fragmentation that occurs in schizophrenia. He also noted that some of the children had specific talents that could lead to successful employment and some could develop life-long relationships.

Pathways to a diagnosis

Today, when a child or adult is referred for a diagnostic assessment, they may have travelled along one of several different diagnostic pathways. The child referred for a diagnostic assessment would have had an unusual developmental history and profile of abilities from early childhood, though the average age for a diagnosis of a child with Asperger's syndrome is between 8 and 11 years (Eisenmajer et al. 1996; Howlin and Asgharian 1999). I have identified several pathways to that diagnosis, which may commence when the child is an infant, or at other stages of development, or even at specific times in the adult's life history.

Diagnosis of autism in infancy or early childhood

Lorna Wing, who first used the term Asperger's syndrome, considered that there was a need for a new diagnostic category. She had observed that some children who had the clear signs of severe autism in infancy and early childhood could achieve remarkable progress and move along the autism continuum as a result of early diagnosis and intensive and effective early intervention programs (Wing 1981). The previously socially aloof and silent child now wants to play with children and can talk using complex sentences. Where previously there was motivation for isolation, the child is now motivated to be included in social activities. After many hours in intensive programs to encourage communication abilities, the problem is no longer encouraging the child to speak, but encouraging him or her to talk less, listen and be more aware of the social context. As a younger child, there may have been a preoccupation with sensory experiences - the spinning wheel of a toy car or bicycle may have mesmerized the child - but now he or she is fascinated by a specific topic, such as the orbits of the planets. Previous assessments and observations of play would have indicated the possibility of significant intellectual impairment, but now the child is confirmed as having an Intelligence Quotient (IQ) within the normal range.

Peter Szatmari has suggested that those children with autism who develop functional language in early childhood eventually join the developmental trajectory and have a profile of abilities typical of a child with Asperger's syndrome (Szatmari 2000). At one point in a child's early development, autism is the correct diagnosis, but a distinct subgroup of children with autism can show a remarkable improvement in language, play and motivation to socialize with their peers between the ages of four and six years. The developmental trajectory for such children has changed and their profile of abilities in the primary or elementary school years is consistent with the characteristics of Asperger's syndrome (Attwood 1998; Dissanayake 2004; Gillberg 1998; Wing 1981). These children, who may subsequently be diagnosed as having High Functioning Autism or Asperger's syndrome, will benefit from the strategies and services designed for children with Asperger's syndrome rather than autism.

Recognition of Asperger's syndrome in the early school years

During the diagnostic assessment of adults, I usually ask when the person first recognized that he or she was different to other people. Many adults who are diagnosed in their mature years say that the first time they felt different to others was when they started school. They describe being able to understand and relate to family members, including playing socially with brothers and sisters, but when they were expected to play with their peers at school and relate to a teacher, they recognized themselves as being very different from children their age. When I ask these adults to describe those differences, the replies usually refer to not being interested in the social activities of their peers, not wanting to include others in their own activities, and not understanding the social conventions in the playground or classroom.

The diagnostic pathway commences when an experienced teacher observes a child who has no obvious history of characteristics associated with autism, but who is very unusual in terms of his or her ability to understand social situations and conventions. The child is also recognized as immature in the ability to manage emotions and to express empathy. There can be an unusual learning style with remarkable knowledge in an area of interest to the child, but significant learning or attention problems for other academic skills. The teacher may also notice problems with motor coordination such as handwriting, running, and catching a ball. The child may also cover his or her ears in response to sounds that are not perceived as unpleasant by other children.

When in the playground, the child may actively avoid social play with peers or be socially naïve, intrusive or dominating. In class, the teacher recognizes that the child does not seem to notice or understand the non-verbal signals that convey messages such as 'not now' or 'I am starting to feel annoyed.' The child can become notorious for interrupting or not responding to the social context in ways that would be expected of a child of that age and intellectual ability. The teacher may also notice that the child becomes extremely anxious if routines are changed or he or she cannot solve a problem.

The child is obviously not intellectually impaired but appears to lack the social understanding of his or her peers. The teacher knows that the child would benefit from programs to help in his or her understanding of the social conventions of the classroom and school playground. The teacher also needs access to training, in-class support, resources and expertise in Asperger's syndrome to facilitate successful social integration and academic success. The child needs help and the teacher needs help.

My clinical experience suggests that the majority of children with Asperger's syndrome achieve a diagnosis using this pathway. The child's unusual profile of abilities and behaviour are not conspicuous at home but a teacher recognizes qualitative differences in abilities and behaviour in the classroom and playground. At a subsequent meeting of parents and representatives of the school, parents are encouraged to seek a diagnostic assessment both to explain the unusual behaviour and profile of abilities, and for the parents and school to achieve access to appropriate programs and resources.

The previous diagnosis of another developmental disorder

Another diagnostic pathway is that a child's developmental history includes a developmental disorder that can be associated with Asperger's syndrome. The diagnosis of a disorder of attention, language, movement, mood, eating or learning ability can be the start of the formal assessment process that eventually leads to a diagnosis of Asperger's syndrome.

Attention Deficit Hyperactivity Disorder

The general population is reasonably knowledgeable about Attention Deficit Hyperactivity Disorder (ADHD) and the child may be of concern to parents and teacher because of problems with sustained attention, impulsivity and hyperactivity. This diagnosis may account for the child's difficulties in these areas but not explain the child's unusual profile of social, linguistic and cognitive abilities, which are more accurately described by the diagnostic criteria for Asperger's syndrome. The ADHD was accurately diagnosed first but was not the end of the diagnostic trail.

Clinicians have recognized for some time that children with Asperger's syndrome can also have signs of ADHD, which has been confirmed by several research studies and case descriptions (Ehlers and Gillberg 1993; Fein et al. 2005; Ghaziuddin, Weider-Mikhail and Ghaziuddin 1998; Klin and Volkmar 1997; Perry 1998; Tani et al. 2006). The two diagnoses are not mutually exclusive and a child may benefit from the medical treatment and strategies used for both disorders.

I have observed young children with Asperger's syndrome who have been hyperactive but not necessarily due to having ADHD. The hyperactivity can be a response to a high level of stress and anxiety, particularly in new social situations, making the child unable to sit still and relax. It is important to distinguish between a range of factors that can influence attention span (such as motivation) and hyperactivity before confirming the diagnosis of ADHD.

A language disorder

A young child who has Asperger's syndrome may first be recognized as having a delay in the development of speech and be referred to a speech/language pathologist for assessment and therapy. Formal testing of communication skills may identify both delay in language development and specific characteristics that are not typical of any of the stages in language development. The assessment would indicate language delay and deviance with a pattern of linguistic abilities that resembles Semantic Pragmatic Language Disorder (SPLD). Children with SPLD have relatively good language skills in the areas of syntax, vocabulary and phonology but poor use of language in a social context, i.e. the art of conversation or the pragmatic aspects of language (Rapin 1982). Semantic abilities are affected such that the child tends to make a literal interpretation of what someone says. The diagnosis of SPLD explains the child's language skills but a comprehensive assessment of abilities and behaviour indicates that the broader clinical picture is explained by a diagnosis of Asperger's syndrome.

The diagnostic boundaries between Asperger's syndrome and specific language disorders such as SPLD are not clear cut (Bishop 2000). Receptive language delay in young children is often associated with problems with socialization (Paul, Spangle-Looney and Dahm 1991). A child who has difficulties understanding someone's language and being understood could become anxious and withdrawn in social situations. The reason for the social withdrawal is then due to language impairment rather than the impaired social reasoning that occurs in Asperger's syndrome. During the diagnostic assessment it is important to distinguish between the secondary consequences of a language disorder and Asperger's syndrome. Nevertheless, the child with Asperger's syndrome who also has signs of SPLD will benefit from programs designed for children who have SPLD.

A movement disorder

A young child may be identified by parents and teachers as being clumsy, with problems with coordination and dexterity. The child may have problems with tying shoelaces, learning to ride a bicycle, handwriting and catching a ball, and an unusual or immature gait when running or walking. The child is referred to an occupational therapist or physiotherapist for assessment and therapy. The assessment may confirm a delay in movement skills or a specific movement disorder but the therapist may note other unusual characteristics in the child's developmental history and profile of abilities and be the first professional to suspect that the child has Asperger's syndrome. Although the coordination problems were the start of the diagnostic pathway to Asperger's syndrome, the child will still obviously benefit from programs to improve motor skills.

Some children with Asperger's syndrome can develop involuntary, rapid and sudden body movements (motor tics) and uncontrollable vocalizations (vocal tics) that resemble signs of Tourette's syndrome (Ehlers and Gillberg 1993; Gillberg and Billstedt 2000; Kadesjo and Gillberg 2000; Ringman and Jankovic 2000). A diagnostic assessment for Tourette's syndrome due to the recognition of motor and vocal tics could be a pathway to the further diagnosis of Asperger's syndrome.

A mood disorder

We know that young children with Asperger's syndrome are prone to develop mood disorders (Attwood 2003a), and some children seem to be almost constantly anxious, which might indicate a Generalised Anxiety Disorder (GAD). One of the problems faced by children with Asperger's syndrome who use their intellect rather than intuition to succeed in some social situations is that they may be in an almost constant state of alertness and anxiety, leading to a risk of mental and physical exhaustion.

The child may have developed compensatory mechanisms to avoid ­anxiety-­provoking situations such as school, by refusing to go to school or being mute at school (Kopp and Gillberg 1997). There may be intense anxiety or a phobic reaction to certain social situations, or to sensory experiences such as a dog barking, or to a change in expectations such as an alteration to the daily school routine. A referral to a clinical psychologist, psychiatrist or mental health service for children with a mood disorder may lead to a diagnosis of Asperger's syndrome when a detailed and comprehensive developmental history is completed (Towbin et al. 2005).

Some children with Asperger's syndrome can become clinically depressed as a reaction to their realization of having considerable difficulties with social integration. The depressive reaction can be internalized, leading to self-criticism and even thoughts of suicide; or externalized, resulting in criticism of others and an expression of frustration or anger, especially when the child has difficulty understanding a social situation. Blame is directed at oneself: 'I am stupid'; or others: 'It's your fault.' The signs of a clinical depression or problems with anger management could be the first indicators of a developmental disorder such as Asperger's syndrome.

An eating disorder

Eating disorders can include refusal to eat foods of a specified texture, smell or taste due to a sensory hypersensitivity (Ahearn et al. 2001). There can also be unusual food preferences, and routines regarding meals and food presentation (Nieminen-von Wendt 2004). Referral to a paediatrician for problems with food intake, diet or weight can lead to a diagnosis of Asperger's syndrome. Several studies have also suggested an ­over-­representation of low body weight in Asperger's syndrome that may be due to anxiety or sensory sensitivity associated with food (Bolte, Ozkara and Poustka 2002; Hebebrand et al. 1997; Sobanski et al. 1999).

Serious eating disorders such as anorexia nervosa can be associated with Asperger's syndrome, with approximately 18 to 23 per cent of adolescent girls with anorexia nervosa also having signs of Asperger's syndrome (Gillberg and Billstedt 2000; Gillberg and Rastam 1992; Gillberg et al. 1996; Rastam, Gillberg and Wentz 2003; Wentz et al. 2005; Wentz Nilsson et al. 1999). Thus, concerns about food intake or the diagnosis of an eating disorder could be the starting point for a diagnostic assessment for Asperger's syndrome.

Non-verbal Learning Disability

A young child may be recognized as having an unusual profile of intellectual and academic abilities, and formal testing by a neuropsychologist indicates a significant discrepancy between verbal reasoning abilities (Verbal IQ) and visual-spatial reasoning (Performance IQ). If the discrepancy is a significantly higher Verbal IQ, a subsequent and more detailed assessment of cognitive abilities may indicate a diagnosis of Non-verbal Learning Disability (NLD).

The main characteristics of NLD are deficits in the following: visual-perceptual-­organizational abilities; complex psychomotor skills and tactile perception; adapting to novel situations; time perception; mechanical arithmetic; and social perception and social interaction skills. There are relative assets in auditory perception, word recognition, rote verbal learning and spelling. This pattern of abilities suggests right-hemisphere dysfunction and white matter damage to the brain (Rourke and Tsatsanis 2000). The overlap between NLD and Asperger's syndrome is an area of continuing study and discussion among clinicians (Volkmar and Klin 2000). If the child with NLD is subsequently diagnosed as having Asperger's syndrome, information on the child's unusual profile of cognitive skills can be invaluable for a teacher in terms of how to adapt the school curriculum for a distinct learning style.

First recognition of the clinical signs in adolescence

As a child matures into adolescence, the social and academic worlds become more complex and there is an expectation that the child should become more independent and self-reliant. In the early school years, social play tends to be more action than conversation, with friendships being transitory and social games relatively simple with clear rules. In adolescence, friendships are based on more complex interpersonal rather than practical needs, someone to confide in rather than someone to play ball with.

In the early school years, the child has one teacher for the whole year and both teacher and child learn how to read each other's signals and develop a working relationship. There is also more guidance, flexibility and leniency with regard to the school curriculum and expected social and emotional maturity. Life is relatively simple and the child may be less aware of being different to other children, and his or her difficulties may not be conspicuous in the classroom or playground.

During adolescence, a teenager with Asperger's syndrome is likely to have increasingly conspicuous difficulties with planning and organizational skills, and completing assignments on time. This can lead to a deterioration in school grades that comes to the attention of teachers and parents. The teenager's intellectual abilities have not deteriorated, but the methods of assessment used by teachers have changed. Knowledge of history is no longer remembering dates and facts but organizing a coherent essay. The study of English requires abilities with characterization and to 'read between the lines'. A group of students may be expected to submit a science project and the teenager with Asperger's syndrome is not easily assimilated into a working group of students. The deterioration in grades and subsequent stress can lead the adolescent to be referred to the school psychologist who recognizes signs of Asperger's syndrome.

I have noted that the signs of Asperger's syndrome are more conspicuous at times of stress and change, and during the teenage years there are major changes in expectations and circumstances. The child may have coped well during his or her pre-adolescent years, but changes in the nature of friendship, body shape, school routines and support may precipitate a crisis that alerts the relevant diagnostic authorities to the discovery of Asperger's syndrome in a child who was previously coping so well.

Adolescence is also a time of re-appraisal of who one is and wants to be. The influence of parents in an adolescent's life diminishes and the power of and identification with the peer group increases. The teenager is expected to relate to many teachers, each with his or her own personality and teaching style, and to engage in academic assessment that relies on abstract thinking rather than facts. Problems with social inclusion, acceptance and academic success can precipitate a clinical depression, or anger directed to others or the 'system'.

The adolescent may be referred to adolescent psychiatric services for the treatment of depression, an anxiety disorder - which at this age can include Obsessive Compulsive Disorder (Bejerot, Nylander and Lindstrom 2001) - an eating disorder such as anorexia nervosa, problems with anger, or a conduct disorder. I have also seen some children who have various levels of expression of four disorders which can form a cluster, namely Attention Deficit Hyperactivity Disorder, Asperger's syndrome, Tourette's disorder and an Obsessive Compulsive Disorder. Each diagnosis is correct and the child or adult will need treatment for all four disorders.

The suggestion of a conduct or personality disorder

Asperger described a subgroup of children with a tendency to have conduct problems, leading to their being suspended from school - one of the main reasons the children who were subsequently diagnosed as having autistic personality disorder were referred to his clinic in Vienna. Sometimes children with Asperger's syndrome perceive themselves as more adult than child. Indeed, such children may act in the classroom as an assistant to the teacher, correcting and disciplining the other children. In situations of conflict, they are less likely to refer to an adult to act as an adjudicator, and are liable to 'take the law into their own hands'. These children may also learn that acts of aggression can repel other children, ensuring uninterrupted solitude. Conflict and confrontation with adults can be made worse by non-compliance, negativism, and a difficulty in perceiving the differences in social status or hierarchy, resulting in a failure to respect authority or maturity.

The child with Asperger's syndrome is often immature in the art of negotiation and compromise and may not know when to back down and apologize. He or she will not accept a particular school rule if it appears to be illogical, and will pursue a point or argument as a matter of principle. This can lead to a history of significant conflict with teachers and school authorities.

We know that the child with Asperger's syndrome has difficulty with social integration with his or her peers. If that child also has superior intellectual ability, difficulties in social integration may be compounded. Those children who have exceptionally high IQs may compensate by becoming arrogant and egocentric, and have considerable difficulty acknowledging that they have made a mistake. Such children can be hypersensitive to any suggestion of criticism, yet overly critical of others, including teachers, parents or authority figures. The school or parents may turn to professional help with regard to the attitude and conduct of such children, leading to a diagnosis of Asperger's syndrome. Referral to a behaviour management specialist may be the starting point of the pathway to a diagnosis of Asperger's syndrome.

Diagnosis of a relative with autism or Asperger's syndrome

When a child or adult is diagnosed as having autism or Asperger's syndrome, parents and relatives will soon become aware of the different forms of expression of autism, and review their own family history and the characteristics of their relatives for signs of autism spectrum disorder, in particular Asperger's syndrome. Recent research has indicated that 46 per cent of the first-degree relatives of a child with Asperger's syndrome have a similar profile of abilities and behaviour (Volkmar, Klin and Pauls 1998), although usually to a degree that is sub-clinical, i.e. more a description of personality than a syndrome or disorder.

After a child has a diagnosis of Asperger's syndrome confirmed, the clinician may then receive another referral for the diagnostic assessment of a sibling or relative of the child. The diagnosis may be confirmed and clinical experience has indicated that some families have children and adults with Asperger's syndrome within and between generations. This has been confirmed in some of the autobiographies of adults with Asperger's syndrome (Willey 1999). However, the subsequent diagnostic assessment may indicate that the level of expression of the characteristics is too 'mild' for a diagnosis, or the person has a number of 'fragments' of Asperger's syndrome that are insufficient for a diagnosis. Nevertheless, the person may benefit from some of the strategies that are designed for the characteristics or fragments that are present in his or her profile of abilities.

Recognition of the signs of Asperger's syndrome from the media

Watching a television programme or news item that explains Asperger's syndrome, or reading a magazine article or popular autobiography by an adult with Asperger's syndrome, may be the starting point for some people to seek a diagnostic assessment for themselves or a family member, colleague or friend. In Australia, I recently explained the nature of Asperger's syndrome on a national 'live' television programme, and the switchboard of the television company was subsequently inundated with calls from parents who recognized the signs of Asperger's syndrome in their adult son or daughter who, due to their age, had never had access to the diagnostic knowledge that is available for children today. In the next few years there is likely to be a deluge of referrals of adults for a diagnostic assessment for Asperger's syndrome.

Sometimes partners in a relationship may acquire information from the media, and consider that a diagnosis of Asperger's syndrome may explain their husband's (or wife's) unusual hobby and difficulties with empathy and social skills. It is important to remember that many typical women feel that their partner does not understand what they are thinking or feeling, and that many natural characteristics of males could be perceived as signs of Asperger's syndrome. Nevertheless, I have noted an increase in referrals from relationship counsellors who are becoming aware of how to recognize genuine signs of Asperger's syndrome in couples who are seeking relationship counselling (Aston 2003).

Employment problems

Although the person with Asperger's syndrome may achieve academic success, difficulties with social skills may affect his or her performance at a job interview, the social or team aspects of employment, or the understanding of social conventions such as standing too close or looking at someone too long. Getting and keeping a job may be a problem. An assessment by a careers guidance agency, government employment agency or the personnel department of a company may be the first step down the pathway to recognition of Asperger's syndrome. There is probably a high rate of Asperger's syndrome among the chronically unemployed.

Another diagnostic pathway in the area of employment is a change in job expectations. This can be, for example, a promotion to management, requiring interpersonal skills, and conferring responsibilities that demand planning and organizational abilities which can be elusive in some adults with Asperger's syndrome. There can also be issues of not accepting conventional procedures, and difficulties with time management, and recognizing and accepting the organizational hierarchy.

Why pursue a diagnosis?

The very young child with Asperger's syndrome may not be aware of being different from other children of his or her age. However, adults and other children will become increasingly aware that the child does not behave, think or play like other children. The initial opinion of adults within the extended family and school may be that the child is rude and selfish, while peers may think that the child is just weird. If there is no diagnosis and explanation, others will make moral judgements that will inevitably have a detrimental effect on the child's self-esteem and lead to inappropriate attitudes and consequences.

Gradually the child will recognize that he or she is perceiving and experiencing the world in an unusual way and will become concerned about being different from other children. This is not only in terms of different interests, priorities and social knowledge but also in terms of frequent criticisms by peers and adults. The realization of being different to other children usually occurs when the child with Asperger's syndrome is between six and eight years old.

Claire Sainsbury was about eight years old:

Here is one of my most vivid memories of school; I am standing in a corner of the playground as usual, as far away as possible from people who might bump into me or shout, gazing into the sky and absorbed in my own thoughts. I am eight or nine years old and have begun to realize that I am different in some nameless but all-pervasive way.

I don't understand the children around me. They frighten and confuse me. They don't want to talk about things that are interesting. I used to think that they were silly, but now I am beginning to understand that I am the one who is all wrong. (Sainsbury 2000, p.8)

The child can then develop compensatory thoughts and attitudes for feeling alienated, socially isolated and not understood.

Compensatory and adjustment strategies to being different

I have identified four compensatory or adjustment strategies developed by young children with Asperger's syndrome as a response to the realization that they are different from other children. The strategy used will depend on the child's personality, experiences and circumstances. Those children who tend to internalize thoughts and feelings may develop signs of self-blame and depression, or alternatively use imagination and a fantasy life to create another world in which they are more successful. Those children who tend to externalize thoughts and feelings can either become arrogant and blame others for their difficulties, or view others not as the cause but the solution to their problems and develop an ability to imitate other children or characters. Thus some psychological reactions can be constructive while others can lead to significant psychological problems.

A reactive depression

Social ability and friendship skills are highly valued by peers and adults and not being successful in these areas can lead some children with Asperger's syndrome to internalize their thoughts and feelings by being overly apologetic, self-critical and increasingly socially withdrawn. The child, sometimes as young as seven years old, may develop a clinical depression as a result of insight into being different and perceiving him- or herself as socially defective.

Intellectually, the child has the ability to recognize his or her social isolation, but lacks social skills in comparison to intellectual and age peers, and does not know intuitively what to do to achieve social success. Brave attempts by the child to improve social integration with other children may be ridiculed and the child deliberately shunned. Teachers and parents may not be providing the necessary level of guidance and especially encouragement. The child desperately wants to be included and to have friends but does not know what to do. The result can be a crisis of confidence, as described in the following quotation from an unpublished autobiography by my sister-in-law, who has Asperger's syndrome.

The fact is, no one likes others to know their weaknesses, but with an affliction like mine, it's impossible to always avoid making a fool of yourself or looking indignant/undignified. Because I never knew when the next 'fall' is going to occur, I avoid climbing up on to a 'confidence horse' so to speak.

There can be increased social withdrawal due to a lack of social competence that decreases the opportunities to develop social maturity and ability. The depression can also affect motivation and energy for other previously enjoyable activities in the classroom and at home. There can be changes in sleep patterns and appetite, and a negative attitude that pervades all aspects of life and, in extreme cases, talk of suicide, or impulsive or planned suicide attempts.

Escape into imagination

A more constructive internalization of thoughts and feelings of being socially defective can be to escape into imagination. Children with Asperger's syndrome can develop vivid and complex imaginary worlds, sometimes with make-believe friends.

Thomas has Asperger's syndrome and considerable intellectual ability. In his biography written by his mother, she describes one of the reasons why her son escaped into his imagination:

During a speech session at school, Thomas was asked by his speech teacher, 'So who do you play with at recess?'

'My imagination. What do you think?' he informed her.

'Who do you think you should play with at recess?' she enquired.

'Anyone that understands me; but that's nobody but you adults and you don't have time for me,' he said bluntly. (Barber 2006, p.103)

In their imaginary worlds with imaginary friends, children with Asperger's syndrome are understood, and successful socially and academically. Another advantage is the responses of the imaginary friends are under the child's control and the friends are instantly available. Imaginary friends can prevent the child from feeling lonely. Liane Holliday Willey explained that:

When I think of my earliest years, I recall an overwhelming desire to be away from my peers. I much preferred the company of my imaginary friends. Penny and her brother Johnna were my best friends, though no one saw them but me. My mother tells me I used to insist that we set them a place at the table, include them in our car trips, and treat them like they were real beings. (Willey 1999, p.16)

In a personal communication to me, Liane explained that having imaginary friends 'is not pretend play, so much as the only play that works'.

Having an imaginary friend is typical of the play of many young children and is not necessarily of clinical significance. However, the child with Asperger's syndrome may only have friends who are imaginary, and the intensity and duration of the imaginary interactions can be qualitatively unusual.

Searching for an alternative world can lead some children to develop an interest in another country, culture, period of history or the world of animals, as described in the following passage by my sister-in-law.

When I was about seven, I probably saw something in a book, which fascinated me and still does. Because it was like nothing I had ever seen before and totally unrelated and far removed from our world and our culture. That was Scandinavia and its people. Because of its foreignness it was totally alien and opposite to any one and any thing known to me. That was my escape, a dream world where nothing would remind me of daily life and all it had to throw at me. The people from this wonderful place look totally unlike any people in the 'real world'. Looking at these faces, I could not be reminded of anyone who might have humiliated, frightened or rebuked me. The bottom line is I was turning my back on real life and its ability to hurt, and escaping. (Unpublished autobiography)

The interest in other cultures and worlds can explain the development of a special interest in geography, astronomy and science fiction, such that the child discovers a place where his or her knowledge and abilities are recognized and valued.

Sometimes the degree of imaginative thought can lead to an interest in fiction, both as a reader and author. Some children, especially girls, with Asperger's syndrome can develop the ability to use imaginary friends, characters and worlds to write quite remarkable fiction. This could lead to success as an author of fiction for children or adults.

The escape into imagination can be a psychologically constructive adaptation, but there are risks of other people misinterpreting the child's intentions or state of mind. Hans Asperger wrote, with regard to one of the four children who became the basis of his thesis on autistic personality disorder, that:

He was said to be an inveterate 'liar'. He did not lie in order to get out of something that he had done - this was certainly not his problem, as he always told the truth very brazenly - but he told long, fantastic stories, his confabulations becoming ever more strange and incoherent. He liked to tell fantastic stories, in which he always appeared as the hero. He would tell his mother how he was praised by the teacher in front of the class, and other similar tales. (Asperger [1944] 1991, p.51)

Under conditions of extreme stress or loneliness the propensity to escape into an imaginary world and imaginary friends can lead to an internal fantasy becoming a 'reality' for the person with Asperger's syndrome. The person may be considered as developing delusions and being out of touch with reality (Adamo 2004). This could result in a referral for a diagnostic assessment for schizophrenia, as described in the biography of Ben by his mother, Barbara LaSalle (2003).

Denial and arrogance

An alternative to internalizing negative thoughts and feelings is to externalize the cause and solution to feeling different. The child can develop a form of over-compensation for feeling defective in social situations by denying that there is any problem, and by developing a sense of arrogance such that the 'fault' or problem is in other people and that the child is 'above the rules' that he or she finds so difficult to understand. The child or adult goes into what I describe as 'God mode', an omnipotent person who never makes a mistake, cannot be wrong and whose intelligence must be worshipped. Such children can deny that they have any difficulties making friends, or reading social situations or someone's thoughts and intentions. They consider they do not need any programs or to be treated differently from other children. They vehemently do not want to be referred to a psychologist or psychiatrist, and are convinced that they are not mad or stupid.

Nevertheless, the child does know, but will not publicly acknowledge, that he or she has limited social competence, and is desperate to conceal any difficulties in order not to appear stupid. A lack of ability in social play with peers and in interactions with adults can result in the development of behaviours to achieve dominance and control in a social context; these include the use of intimidation, and an arrogant and inflexible attitude. Other children and parents are likely to capitulate to avoid yet another confrontation. The child can become 'intoxicated' by such power and dominance, which may lead to conduct problems.

When such children are confused as to the intentions of others or what to do in a social situation, or have made a conspicuous error, the resulting 'negative' emotion can lead to the misperception that the other person's actions were deliberately malicious. The response is to inflict equal discomfort, sometimes by physical retaliation: 'He hurt my feelings so I will hurt him.' Such children and some adults may ruminate for many years over past slights and injustices and seek resolution and revenge (Tantam 2000a).

The compensatory mechanism of arrogance can also affect other aspects of social interaction. The child may have difficulty admitting being wrong and be notorious for arguing. Hans Asperger advised that:

There is a great danger of getting involved in endless arguments with these children, be it in order to prove that they are wrong or to bring them towards some insight. This is especially true for parents, who frequently find themselves trapped in endless discussion. (Asperger [1944] 1991, p.48)

There can be a remarkably accurate recall of what was said or done to prove a point, and no concession, or acceptance of a compromise or a different perspective. Parents may consider that this characteristic could lead to a successful career as a defence lawyer in an adversarial court. Certainly the child has had a great deal of practice arguing his or her point.

Unfortunately, the arrogant attitude can further alienate the child from natural friendships, and denial and resistance to accepting programs to improve social understanding can increase the gap between the child's social abilities and that of his or her peers. We can understand why the child would develop these compensatory and adjustment strategies. Unfortunately, the long-term consequences of these compensatory mechanisms can have a significant effect on friendships and prospects for relationships and employment as an adult.

Imitation

An intelligent and constructive compensatory mechanism used by some children is to observe and absorb the persona of those who are socially successful. Such children initially remain on the periphery of social play, watching and noting what to do. They may then re-enact the activities that they have observed in their own solitary play, using dolls, figures or imaginary friends at home. They are rehearsing, practising the script and their role, to achieve fluency and confidence before attempting to be included in real social situations. Some children can be remarkably astute in their observation abilities, copying gestures, tone of voice and mannerisms. They are developing the ability to be a natural actor. For example, in her autobiography, Liane Holliday Willey describes her technique:

I could take part in the world as an observer. I was an avid observer. I was enthralled with the nuances of people's actions. In fact, I often found it desirable to become the other person. Not that I consciously set out to do that, rather it came as something I simply did. As if I had no choice in the matter. My mother tells me I was very good at capturing the essence and persona of people. (Willey 1999, p.22)

I was uncanny in my ability to copy accents, vocal inflections, facial expressions, hand movements, gaits, and tiny gestures. It was as if I became the person I was emulating. (Willey 1999, p.23)

Becoming an expert mimic can have other advantages. The child may become popular for imitating the voice and persona of a teacher or character from television. The adolescent with Asperger's syndrome may apply knowledge acquired in drama classes to everyday situations, determining who would be successful in this situation and adopting the persona of that person. The child or adult may remember the words and body postures of someone in a similar situation in real life or in a television programme or film. He or she then re-enacts the scene using 'borrowed' dialogue and body language. There is a veneer of social success but, on closer examination, the apparent social ­competence is not spontaneous or original but artificial and contrived. However, practice and success may improve the person's acting abilities such that acting becomes a possible career option.

An adult with Asperger's syndrome who is a retired actor wrote to me and explained that, 'As an actor, I find the scripts in theatre far more real than everyday life. The role playing comes naturally to me.' The ability to act a role in daily life is explained by Donna Williams:

I found it impossible to talk to her in a normal voice. I began to put on a strong American accent, making up a history and identity for myself to go with it. As always, I actually convinced myself that I was this new character and consistently kept this up for six months. (Williams 1998, p.73)

There are several possible disadvantages. The first is observing and imitating popular but notorious models, for example the school 'bad guys'. This group may accept the adolescent with Asperger's syndrome, who wears the group's 'uniform', speaks their language and knows their gestures and moral code; but this in turn may alienate the adolescent from more appropriate models. The group will probably recognize that the person with Asperger's syndrome is a fake, desperate to be accepted, who is probably not aware that he or she is being covertly ridiculed and 'set up'. Another disadvantage is that some psychologists and psychiatrists may consider that the person has signs of multiple personality disorder, and fail to recognize that this is a constructive adaptation to having Asperger's syndrome.

Some children with Asperger's syndrome dislike who they are and would like to be someone other than themselves, someone who would be socially able and have friends. A boy with Asperger's syndrome may notice how popular his sister is with her peers. He may also recognize that girls and women, especially his mother, are naturally socially intuitive; so to acquire social abilities, he starts to imitate girls. This can include dressing like a girl. There are several published case reports and, in my clinical experience, I have seen several males and females with Asperger's syndrome who have issues with gender identity (Gallucci, Hackerman and Schmidt 2005; Kraemer et al. 2005). This can also include girls with Asperger's syndrome who have self-loathing and want to become someone else. Sometimes such girls want to be male, especially when they cannot identify with the interests and ambitions of other girls, and the action activities of boys seem more interesting. However, changing gender will not automatically lead to a change in social acceptance and self-acceptance.

When adults with Asperger's syndrome have used imitation and acting to achieve superficial social competence, they can have considerable difficulty convincing people that they have a real problem with social understanding and empathy; they have become too plausible in their role to be believed.

What are the advantages and disadvantages of having a diagnosis?

The advantage to the child of having a diagnosis is not only in preventing or reducing the effects of some compensatory or adjustment strategies, but also to remove worries about other diagnoses, such as being insane. The child can be recognized as having genuine difficulties coping with experiences that others find easy and enjoyable. When an adult has problems with the non-verbal aspects of communication, especially eye contact, there can be an assumption made by the general public that he or she has a mental illness or malicious intent. Once the characteristics of Asperger's syndrome are explained, such assumptions can be corrected.

Children with Asperger's syndrome have no physical characteristics to indicate that they are different, and having intellectual ability may lead others to have high expectations with regard to their social knowledge. Once the diagnosis is confirmed and understood, there can be a significant positive change in other people's expectations, ­acceptance and support. The child is now understood and more likely to be respected. There should be compliments rather than criticism with regard to social competence, and acknowledgement of the child's confusion and exhaustion from learning two curricula at school: the academic curriculum and the social curriculum.

The advantage of acknowledging and understanding the diagnosis for parents is that, at last, they have an explanation for their son's or daughter's unusual behaviours and abilities, and knowledge that the condition is not caused by faulty parenting. The family may then have access to knowledge on Asperger's syndrome from literature and the Internet, resources from government agencies and support groups, as well as access to programs to improve social inclusion and emotion management that will greatly benefit the whole family. There may also be greater acceptance of the child within the extended family and family friends. The parents can now provide an acceptable explanation to other people regarding the child's unusual behaviour. It is also important that parents explain to the child that having Asperger's syndrome is not an excuse to avoid chores and responsibilities.

Siblings may have known for some time that their brother or sister is unusual and may have been either compassionate, tolerant and concerned about any difficulties, or embarrassed, intolerant and antagonistic. Each sibling will make his or her own accommodations towards the sibling with Asperger's syndrome. Parents can now explain to their children why their brother or sister is unusual, and how the family has had to, and will need to, adjust and work cooperatively and constructively to implement the strategies. Parents and professionals can provide the siblings with age-appropriate explanations about their brother or sister, to give their friends, without jeopardizing their own social networks. Siblings will also need to know how to help their brother or sister at home when friends visit, and be made aware of their role and responsibilities at school and in the neighbourhood.

The advantages for school services, especially teachers, is that the child's unusual behaviour and profile of social, cognitive, linguistic and motor skills are recognized as a legitimate disorder that should provide access to resources to help the teacher. Confirmation of the diagnosis should also have a positive effect on the attitudes of other children in the classroom and other staff who have contact with the child. The teacher can access information from textbooks and resource programs specifically developed for teachers of children with Asperger's syndrome. The teacher can also explain to other children and staff who teach or supervise the child why he or she behaves and thinks in a different way.

The advantages of the diagnosis for the adolescent or adult with Asperger's syndrome can be in terms of support while a student at college or university or in employment. Acknowledgement of the diagnosis can lead to greater self-understanding, self-advocacy and better decision making with regard to careers, friendships and relationships (Shore 2004). An employer is then more likely to understand the profile of abilities and needs of an employee with Asperger's syndrome: for example, the problems that may arise if an employee with visual sensitivity is assigned a work cubicle lit with fluorescent lights.

An adult with a diagnosis of Asperger's syndrome may benefit from joining an adult support group that has local meetings, or an Internet support group or chat room. This can provide a sense of belonging to a distinct and valued culture and enable the person to consult members of the culture for advice. We also know that acceptance of the diagnosis can be an important stage in the development of successful adult relationships with a partner, and invaluable when seeking counselling and therapy from relationship counsellors (Aston 2003).

I have noted that when an adult is diagnosed with Asperger's syndrome there can be a range of emotional reactions. Most adults report that having the diagnosis has been an extremely positive experience (Gresley 2000). There can be intense relief: 'I am not going mad'; euphoria at ending a nomadic wandering from specialist to specialist, at last discovering why they feel and think differently to others; and excitement as to how their lives may now change for the better. A young man with Asperger's syndrome sent me an e-mail which stated, 'I know I have Asperger's, because nothing else comes even close to describing my weirdness as flawlessly and perfectly as Asperger's syndrome does.'

There can also be moments of anger at the delay in being diagnosed and at 'The System' for not recognizing the signs for so many years. There can be feelings of despair regarding how their lives would have been much easier if the diagnosis had been ­confirmed decades ago. Other emotional reactions can be a sense of grief for all the ­suffering in trying to be as socially successful as others, and the years of feeling misunderstood, inadequate and rejected.

Nita Jackson provides sound advice for fellow people with Asperger's syndrome:

Because Asperger people can be exceptionally stubborn when they get the chance, denial can pose a big problem. The less they acknowledge their condition, the less they can improve upon their social skills, and consequently the higher the probability of them being friendless and/or victimized. Don't think that acknowledgement solves everything (it doesn't), but at least it brings a certain amount of self-awareness, which can be built upon. Once the person has this acknowledgement, learning the tricks of the trade - or the rules of the game, as some people refer to it - will be feasible, providing they are advised and directed by people who have at least a basic understanding of the syndrome. (N. Jackson 2002, p.28)

There can be a new sense of personal validation and optimism, at last not feeling stupid, defective or insane. As Liane Holliday Willey said exuberantly on learning of her diagnosis, 'That's why I'm different; I'm not a freak or mad' (Attwood and Willey 2000). There can be benefits in terms of self-esteem and moral support in identifying with other adults with Asperger's syndrome by using the Internet and support groups specifically for and organized by adults with Asperger's syndrome. The group meetings can initially be organized by a local parent support group or by disability support staff at a large university or college that has several students registered with Asperger's syndrome (Harpur, Lawlor and Fitzgerald 2004). Some support groups have formed spontaneously in large cities as occurred in Los Angeles when Jerry Newport, a man with Asperger's syndrome, formed and coordinated the support group AGUA (Adult Gathering, United and Autistic). There can be an affinity, empathy and support network with fellow members of the same 'tribe' or clan who share the same experiences, thinking and perception of the world.

When talking to adults with Asperger's syndrome about the diagnosis, I often refer to the self-affirmation pledge of those with Asperger's syndrome written by Liane Holliday Willey.

I am not defective. I am different.

I will not sacrifice my self-worth for peer acceptance.

I am a good and interesting person.

I will take pride in myself.

I am capable of getting along with society.

I will ask for help when I need it.

I am a person who is worthy of others' respect and acceptance.

I will find a career interest that is well suited to my abilities and interests.

I will be patient with those who need time to understand me.

I am never going to give up on myself.

I will accept myself for who I am. (Willey 2001, p.164)

I consider the last pledge, 'I will accept myself for who I am,' as a major goal when conducting psychotherapy with an adolescent or adult with Asperger's syndrome.

One reaction, although rare, is for some people to deny that they have Asperger's syndrome, insisting there is nothing wrong with or different about them. Despite acknowledging that the clinical descriptions match their developmental history and profile of abilities, they may question the validity of the syndrome and reject any programs or services. However, this may only be an initial reaction and, given time to reflect, they may eventually accept that their personality and profile of abilities includes the characteristics of Asperger's syndrome, and that this is invaluable information when making major decisions in aspects of life such as employment and relationships.

There could be disadvantages in having a diagnosis in terms of how the person and others perceive the characteristics. If the diagnostic news is broadcast widely, there will inevitably be some children or adults who misuse this disclosure to torment and despise the person with Asperger's syndrome. Care must be taken when using the diagnostic term Asperger's syndrome as some children may consider the condition is infectious (or tease the child that it is), or corrupt the term in a variety of ways - Asparagus syndrome, Sparrow syndrome, Hamburger syndrome or Arseburger syndrome, among others. Children can be quite inventive in stigmatizing differences, but more compassionate people may be able to repair some of the damage to the self-esteem of someone with Asperger's syndrome who has been ridiculed for being different.

One of the concerns of adults with Asperger's syndrome is whether they should include reference to the diagnosis on a job application. If there is considerable competition for a particular vacancy, an applicant having a diagnosis that is unknown to the employer might lead to the application being rejected. A potential solution is for the adult to write a brief, perhaps one-page, description of Asperger's syndrome and the qualities and difficulties that would be relevant to the job. This personalized brochure could also be used to explain Asperger's syndrome to colleagues, juniors and line managers. A shorter version can be reduced to a business card that can be given to anyone who needs to know about the person's diagnosis.

Having a diagnosis of Asperger's syndrome could limit the expectations of others, who may assume that the person will never be able to achieve as well as his or her peers with regard to social, academic and personal success. The diagnosis should facilitate realistic expectations but not dictate the upper limits of ability. I have known adults with Asperger's syndrome whose successful careers have ranged from professor of mathematics to social worker; and those whose ability in the area of relationships ranges from enjoying a fulfilling but celibate life, to having a life-long partner and being a much-loved parent.

As a society, we need to recognize the value of having people with Asperger's syndrome in our multi-cultural and diverse community. In summary, maybe we should consider the comment from an adult with Asperger's syndrome who suggested to me that perhaps Asperger's syndrome is the next stage of human evolution.