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Aspergers Kids and Public School Problems

Question

Recently I have been in a battle with the Public School System. The main issue was my 8year old was being bullied beyond belief! They now think my son has Aspergers… I carried him to a Therapist and he said my son had been emotionally and physically abused by the school and has a couple of Aspergers Symptoms... Where to go from here?

Answer

Before the landmark Supreme Court case of Brown v. Board of Education in 1954, school districts frequently did not allow handicapped kids to enroll. Today legislation such as the Education for All Handicapped Kids Act of 1975, amended in 1990 in 2004 to become the Individuals with Disabilities Education Act, protects the right of handicapped kids to a free and appropriate education in the public schools.

The "spirit" of laws that apply to handicapped kids is that each youngster should be educated as an individual. This is a good thing for kids with Aspergers (high-functioning autism) in particular. They need individual treatment because they can range from highly gifted students who excel in academics to kids with a variety of learning disabilities and comorbidities like Oppositional Defiant Disorder. The majority are usually between the two extremes.

From birth to age three years, federal laws require that handicapped kids receive early intervention services. These may be speech and language therapy, nutritional counseling, vision and medical services, parental counseling and so forth. Usually a teacher comes to the youngster's home and works with her one-on-one, although some kids receive services in public school classrooms or clinical settings. However, kids with Aspergers often do not receive a diagnosis until after they enter school so they tend to miss Early Intervention programs.

Once a youngster enters school, moms and dads can require a free evaluation and assessment by a multidisciplinary team. If the team determines the youngster does not require special education, moms and dads have the right to appeal the decision and get another free evaluation. The most common problem is that Aspergers kids often appear too bright and verbal to need services. Their solitary lifestyle can mask their social deficiencies. For this reason, many moms and dads end up hiring lawyers to receive public school accommodations for their kids.

If the school determines that the youngster needs special education, moms and dads should find out what is available at that school and in that district. Services can be speech and language therapy, occupational and physical therapy, counseling, vocational education, and assistive technology like special computer software. Moms and dads have to consider if the youngster should be in a self-contained classroom or mainstreamed or in a combination of both. Moving the youngster to a different school or even school district with better facilities might be beneficial. Often it's a good idea to hire or have the school provide an expert in Aspergers to help staff and moms and dads decide what's best for the youngster.

A handicapped youngster can receive services under the Individuals with Disabilities Act (IDEA) or under Section 504 of the Rehabilitation Act of 1973. Section 504 is about getting access and removing barriers to education. For example, a youngster in a wheelchair may need a special door opener, but once she receives access to the classroom, she is treated like other students. Schools tend to encourage moms and dads to go for 504 accommodations rather than services under IDEA because it is less work for them. One of the few advantages in using 504 accommodations is that the youngster receives no "label." However, many more services become available under IDEA.

Under IDEA, moms and dads and school staff meet together at the beginning of the school year and come up with an "Individualized Education Plan (IEP)." The plan must be written, and include an assessment of the youngster's current strengths and weaknesses. The IEP must contain measurable goals for the year and list specific special education aids and services. Moms and dads and staff meet periodically to make sure the goals are attained. There should be an IEP case manager who checks the youngster's work every day and develops new strategies. Most IEPs for Aspergers kids have contingencies such as allowing extra time for work, giving out shorter or alternate work assignments, providing the youngster with copies of other students' notes, allowing the youngster to take tests over or have extra time for them, or allowing the youngster to take oral instead of written tests.

Some Aspergers kids need those special contingencies. However, for the majority, the most important need is getting help with social interactions and reciprocity. Aspergers kids can excel academically and fail in life because they do not have social skills. One author wrote of a "cycle" in which Aspergers kids earn advanced degrees but cannot land jobs because they do not interview well. Then they take a lower level job that requires hand-eye coordination, fail at that, go back and get another advanced degree and so the cycle goes on.

For this reason, many moms and dads opt out of the public system and find a private school that is designed for kids with Aspergers. Sometimes administrators at their public schools even recommend such a placement. In that case, the school district may pay for tuition at the private school. If a doctor recommends such a school, the tuition costs can be tax-deductible or covered by medical insurance. Many Aspergers kids benefit from even a year or so at a residential school that provides intense, twenty-four hour training in social skills.

Classroom Solutions—

Many kids with Aspergers are very bright, and may even excel academically in one or more subjects. However, they often need protection from other students who bully or take advantage of them. Aspergers kids do not know which students to avoid. For example, if an Aspergers child makes a friend, that "friend" may make him do assignments for him, break rules, take the blame and otherwise put the Aspergers child in jeopardy.

Aspergers kids usually do not understand the "hidden rules" of school but take all rules at face value. They may memorize the rule "Don't swear in middle school." Yet they don't know that all middle students swear, but you don't swear in front of adults, and you don't swear in front of a certain prissy teacher in particular. Aspergers kids also do not understand "hidden social agendas." If an Aspergers child participates on a high school debate team that meets in a coffee house, she comes prepared like a little professor to talk about the subject at hand. She does not understand that the other students are there to socialize as well as practice for the team.

For this reason, Aspergers kids require individualized training in social and emotional competency. There are many promising new teaching techniques for kids with Aspergers. On the elementary school level, some educators are using "social stories" with special cartoons illustrated with "emo faces" to help Aspergers kids recognize facial expressions. Acting classes also might help an Aspergers child better understand emotional reactions.

Self-contained or mainstream classroom? Self-contained classrooms usually have a small number of kids with a variety of special needs. The teacher may have extra training in special education and receive help from one or more aides. Therefore, the big advantage of a self-contained classroom is extra individual attention.

However, there are several disadvantages to self-contained classrooms. Kids with Aspergers often gain more knowledge about social interactions and how the "normal" world operates in a mainstream classroom. Academics may be "watered down" in a self-contained classroom. Kids with Aspergers do not do well with emotionally disturbed kids who are often streetwise and aggressive. If these two groups are together in a self-contained classroom, you often produce a combination of the perfect victim and perfect victimizer.

Sometimes a youngster may start out in a self-contained classroom and gradually transition to a mainstream one. This usually has to be done slowly, and takes an average of two months to two years. It may begin with just a half-hour at a time in the regular classroom for elementary school students, and perhaps an hour at a time in the student's strongest subject on the high school level. Some experts recommend seating the Aspergers child next to a successful student who can help him with organization and provide class notes, if necessary.

In general, Aspergers kids do better in classrooms that are predictable and structured with as few transitions as possible. Teaching with an emphasis on visual presentation plays to the Aspergers child's strength of visual acuity. Educators should structure lessons in clear patterns that are easy to follow.

During "unstructured" periods such as lunch, physical education, recess and passing to classes, an Aspergers child may need special accommodations.

The teacher should have some understanding of Aspergers. A good teacher should not be "fake" because that will just confuse the Aspergers child even more. He may develop a special "cue" such as tapping the youngster's shoulder to help the youngster pay attention when his mind is wandering. He should be strong in language skills, and use drama to help the youngster understand other people's emotions. The teacher should be a calm person in control of his classroom: this will decrease the Aspergers child's anxiety. Changes and surprises will upset an Aspergers child. Therefore, the teacher should help with transitions and let the youngster know in advance when he will have to recite in front of the class.

Some authors describe the importance of having a teacher who can deal with "meltdowns" and "rages." It is best to intervene in the "rumbling" stage. During the actual rage, an Aspergers child may scream, bite, hit, kick and destroy property. For this reason, authors recommend that a teacher wear comfortable clothes and keep expensive or sentimental items out of reach. During "recovery," the youngster may be exhausted, or deny the tantrum happened. It is important that the teacher is a sensitive person so that if an Aspergers child rages at school, he does not experience complete humiliation in front of his peers.

My Asperges Child: Preventing Meltdowns


COMMENTS:

•    Anonymous said… Get him to doc & ask for him to be referred to been tested to see if he has Asperger's syndrome then I would fight to get him in a specialist school! My son has Asperger's syndrome & got bullied beyond belief I only wish I had insisted for him to be put to a specialist school for the extra support & around children like him! I had to home school him for 3 years as the bullying got so bad & then I sent him back for high school he has been out school for about 6 months now but he's coming 16 now so I'm awaiting a p/t support college coarse for him to start this year. I hope this helps & feel free to get in touch with me for anything. My heart breaks for u as I know what your going through as I went through this with my son but be strong & dont be fobbed of by anyone esp education & just follow your heart that's what I done & fought for his diagnosis xxx
•    Anonymous said… I had the same issue with both of my sons. My youngest son was bullied by students and teachers for years. He was diagnosed with Aspergers and ADHD. My oldest has been bullied for 2 years. He was diagnosed with PDD/NOS, ADD. He now suffers from anxiety and panic attacks because of the bullying. I fought the public school system for two years to get my boys in special schools. They are both doing much better. Get your son tested as soon as possible and into a special school if necessary!! Do not wait like I did!! Fight the public school with all you've got and never give up!!!
•    Anonymous said… I told my sons school if you don't want to listen to me I will make a case against all of you and that same day parents was called in
•    Anonymous said… I went through this with my sons previous school until I got out of there and in the with right school system had to go to dr to get the right diagnoses and now my child is doing great, i had to fight to get him help he needed but he has an I E P now and great support system. I take my child to church also and teach him about the lord and how to lean to him to fight battles with bullies. Before I didnt have Jesus now we do and its so much better my son is happy now and doing great. He is not on meds anymore either does better off them than on them but I give him plexus products that was also put in my life to help him by the lord been a blessing.
•    Anonymous said… My son had a breakdown in grade 9 because of bullying -mainstream schooling him was.

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Challenges Faced by Teens and Adults with Aspergers

Despite the rapid growth of interest in Asperger disorder in kids, there continues to be a lack of awareness of the diagnosis and its implications for teens and grown-ups. 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 teens and adults with Aspergers.

The diagnosis of Aspergers (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 kids [1], and 1944, Aspergers paper on autistic personality disorder [2]. Asperger, like Kanner, worked with kids, and his paper, like Kanner's, was about kids. 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 kids such as developmental dyspraxia and speech and language disorders of childhood. The powerful influence of Jaspers lingered, however, and youngster 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 kids with communicative disorders were the victims of bad parenting, it was also assumed that little could be done to help kids so affected.

Fortunately, this therapeutic nihilism motivated some moms and dads to band together to find their own solutions, in particular to press for their kid’s educational needs to be met more effectively. United Kingdom moms and dads founded the National Autistic Society in 1962 and United States moms and dads the Autism Society of America in 1965. Both societies focused their efforts on education, understandably, as it was their kid’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 kids with special needs have a right to have those educational needs systematically assessed with a presumption that any identified educational needs would be met.

Moms and dads who believed that they had secured their kid’s future by establishing programs for their education discovered that their kids continued to have considerable needs once school-leaving age was reached. Moms and dads began to turn their attention to creating suitable communities for these kids, extending and building on the experiences that had grown from the schools. It seemed like a natural progression. Most of the kids were severally impaired and their awareness of themselves with other individuals 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 ASPERGERS. 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 ASPERGERS criteria of autistic personality disorder, and of Lorna Wing's introduction of the eponymous term ASPERGERS, 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 ASPERGERS, defined completely arbitrarily, as a separate, named syndrome, although almost everyone who met the criteria for ASPERGERS 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 ASPERGERS from autistic disorder. But what was a taxonomic blunder has proved to be a practical success. Moms and dads and caregivers know that there are some individuals 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 ASPERGERS by calling it “A Mind of Their Own” [10]. What moms and dads and caregivers have done is to ignore the stipulations in ICD-10 and DSM-IVTR that individuals with ASPERGERS are those individuals with an autistic spectrum disorder but no delay in their cognitive or language development. Instead, they have simply equated ASPERGERS with self-awareness. Many of the kids and grown-ups 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. Individuals with ASPERGERS 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 individuals, often painfully.

The author believes that moms and dads and caregivers have been right in giving ASPERGERS this operational definition. They are right because individuals with ASPERGERS 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.

ASPERGERS 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 individuals with ASPERGERS, as in the question often put to the author by colleagues, “ASPERGERS? 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 individuals with learning difficulty/mental handicap, and other services. Lower functioning individuals, individuals with an IQ less than 70, are their responsibility. Other individuals with autistic disorder are the responsibility of…someone else.

Continuing pressure from caregivers has resulted in some special education programs being developed for kids with ASPERGERS, 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 teen finds that on leaving school, no support is available from pediatric services, from youngster and teen 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 individuals with ASPERGERS, because few of them feel comfortable with services that grant them little autonomy. Indeed, individuals with ASPERGERS 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 teens and grown-ups with ASPERGERS 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 teen or adult with a known diagnosis of ASPERGERS 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 ASPERGERS 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 grown-ups 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 individuals 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 Kids (TEACCH) in 1989. As before in the history of education developments for autistic kids, however, services have been provided mainly by self-help, although this time it has been groups of individuals with Aspergers, rather than their moms and dads, 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 teens and adults with Aspergers?

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

Another answer might be “individuals with ASPERGERS themselves.” It is true that more and more individuals with ASPERGERS are discovering alternative methods to empowerment. The Internet has provided many of these, enabling individuals with ASPERGERS 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 individuals with ASPERGERS.

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 ASPERGERS is part of their mission. This means that moms and dads 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 ASPERGERS, 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 ASPERGERS and psychiatric disorder. One recent study showed that 32% of grown-ups with an autistic spectrum disorder had been diagnosed with a disorder, most commonly (56%), depression [15]. Although ASPERGERS 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 ASPERGERS. 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 teens and grown-ups with ASPERGERS. 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 ASPERGERS has shown that it results in several distinct functional difficulties, all of which affect social interaction, although in different ways.

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

ASPERGERS 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 teen or adult has an inability to write. These associated disorders can profoundly affect education and later, life employment. Despite being obvious that a teen or adult has a marked impairment, it may not be obvious what the cause is, unless a he/she is tested. The reduction of working memory that leads to dysexecutive syndrome, often associated with “atypical ASPERGERS” (see later discussion) is particularly difficult to detect clinically, as is the lack of empathy that is the central feature of atypical ASPERGERS.

Obtaining a cognitive profile of a teen or adult with ASPERGERS 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 teens and grown-ups with ASPERGERS is that their impairments fall squarely in the interpersonal and motivational areas.

Care example

Jane 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. Jane 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.

Jane, and many other individuals with ASPERGERS, 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. Teens, understandably, do not want to define themselves in terms of impairments, but in terms of aspirations and desires. In telling a teen that they have ASPERGERS—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 teen or adult 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 individual with the ASPERGERS and in the mind of the affected individual. Too much emphasis on moral failings by moms and dads or spouse, and the atmosphere becomes one of high “expressed emotion,” as unhelpful for individuals with developmental disorders as it is for individuals 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

James 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 ASPERGERS 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 James. The psychologist said the problem was that James 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.

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

The friction between the idiosyncrasies of individuals with ASPERGERS and the social expectations placed on them only becomes more intense after childhood. Although there has been little evaluation of counseling in ASPERGERS, 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 individuals with Aspergers is specialized. Counselors need to have mastered the skills of their profession, and in addition, to have an understanding and experience of working with individuals with ASPERGERS. There is little training currently available in how to modify counseling techniques to make them suitable for individuals with ASPERGERS. Many counselors of individuals with ASPERGERS are moms and dads who have learned from their own experience how to communicate with a teen or adult with ASPERGERS, and have gone on to do a counseling training.

Perhaps the single most important issue that counselors for individuals with ASPERGERS 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 ASPERGERS is that a teen or adult cannot help having it. What matters, though, is what they do with it. By the time a child with ASPERGERS 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 moms and dads' heartstrings, is a choice that often makes the situation worse, and not simply because making one's moms and dads feel guilty is rarely a good long-term strategy. Being the victim of circumstance means that a teen or adult is not an effective agent. Not being an effective social agent is something that individuals with ASPERGERS 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 teens with ASPERGERS who have got into trouble at school or in the community. The teen 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?

The upshot of my consideration of the first challenge—who should be responsible for helping individuals with ASPERGERS—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 ASPERGERS? How much should third-party payers and moms and dads spend?

One kind of answer is to find out how prevalent ASPERGERS 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 kids, but DSM-IVTR asserts, “Asperger disorder is a continuous and lifelong disorder.” Recent studies indicate that 1 in 150 kids 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 kids [18].

At the time of writing, the United States Census Bureau estimates the United States population to be 287,387,124 individuals, 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 teens and grown-ups who have ASPERGERS 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 teens and grown-ups with the disorder than there are kids, or that teens and adults are better able to live with the impairment, or perhaps that other individuals are better able to live with them. Or perhaps he meant that once individuals 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 individuals with ASPERGERS may present for the first time at almost any age. The author has seen six individuals 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 youngster-rearing problems are common examples.

Until outcome data, or adult prevalence data, are available, the best guess is that, although ASPERGERS 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. Individuals with ASPERGERS may therefore present, or re-present, in adolescence and adulthood.

There have been few studies of the needs of autistic kids and no systematic study of the needs of grown-ups with ASPERGERS. 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 ASPERGERS still live at home with their moms and dads, that 46% of individuals with ASPERGERS 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 ASPERGERS that the author systematically studied between 1980 and 1983, of whom 9% were employed and 41% were living with moms and dads [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 individuals with ASPERGERS 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 individuals with a diagnosis. It is probable, as considered earlier, that there are many more individuals with ASPERGERS 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 kids, and neglect of their homes and surroundings.

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

Collating these facts suggests that the following individuals with ASPERGERS have a need for service:

• Those who have an additional mental health problem
• Those who present problems or concerns to others
• Those who want a diagnosis
• Those who want help to engage in a sexual relationship
• Those who want help to find or maintain work
• Those who want help to live more independently
• Those who want help to make or maintain friendships

Challenge 3: social exclusion

The first five items on this list begin with the expression, “Those who want …” Individual’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 individuals with ASPERGERS who, as many moms and dads and spouses often say, may live in a world of their own. Even when individuals with ASPERGERS 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 ASPERGERS, 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 individuals with ASPERGERS because grown-ups with ASPERGERS 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

Kid’s interests are fiercely guarded by most moms and dads. Only kids with ASPERGERS who are unfortunate enough to live in a dysfunctional family or lack parental care miss out. But moms and dads are more loath to push for services for an adult youngster, and their reluctance is usually reinforced by the institutional resistance in adult services to dealing with moms and dads. 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 grown-ups, often refuse to engage with moms and dads 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 ASPERGERS often are most distinct in early childhood. Best diagnostic practice therefore requires that an appropriate developmental history is taken from moms and dads or lifelong caregivers whenever possible.

Not dealing with moms and dads 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 individual suspected of ASPERGERS should contact them directly. This is unrealistic. Many intelligent individuals with ASPERGERS 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 individuals with ASPERGERS 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 teen or adult suspected of having ASPERGERS 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

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 kids [21], and they are less applicable to teens and grown-ups. 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 ASPERGERS 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” teens.

Because the expression of ASPERGERS 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. Moms and dads may have died or the adult with ASPERGERS 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 ASPERGERS 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 ASPERGERS 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 a teen 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 ASPERGERS.

There are several psychiatric disorders other than ASPERGERS 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 kids 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 ASPERGERS. 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 individual 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. Teens with PDDs, including individuals 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 individual is looking or what they are doing [24]. Individuals with ASPERGERS may be told that they avoid gaze and try to compensate for this by increasing their total time looking at another individual'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 moms and dads 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 teen or adult to interpret other individual’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 ASPERGERS that can be applied easily, psychiatrists need to develop experience assessing individuals with ASPERGERS before making the diagnosis for the first time. This can, and should, be provided in training. An alternative is to ask for individuals with ASPERGERS 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 ASPERGERS that may be bewildering at first.

There are several screening tests, some involving self-administered questionnaires (e.g., 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 ASPERGERS, but more recent inventories are more sensitive. Often they are, however, time-consuming to administer.

Psychiatrists who find teens and grown-ups with ASPERGERS congenial and who do develop diagnostic expertise will find that moms and dads, spouses, and sufferers themselves will beat a path to their door as having a diagnosis.

Challenge 6: why make a diagnosis?

Diagnosis has traditionally been the route by which individuals with ASPERGERS and their caregivers or supporters have accessed specialist services. But this tradition has grown out of the services for individuals with autism who were severely disabled by their condition under all circumstances. The group of individuals with ASPERGERS, who Fitzgerald has argued [26] may have Wittgenstein, Newton, and Einstein among their number, include many individuals 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 youngster socially impaired? What about when his son is diagnosed with ASPERGERS, 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 ASPERGERS?

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 ASPERGERS 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 moms and dads, 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 individuals with ASPERGERS, this translates into being able to maintain contact with grown-ups with ASPERGERS, perhaps over long periods and without specific treatment; or, alternatively, it translates into enabling individuals with ASPERGERS 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 individuals with ASPERGERS 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 ASPERGERS and comfortable relating to individuals with ASPERGERS 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

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

OCD presents a similar problem. Routines or rituals associated with ASPERGERS may be diagnosed as being evidence of OCD before the ASPERGERS diagnosis is made. There were examples, however, of teens 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 individuals with ASPERGERS 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 ASPERGERS. But it is certainly true that anxiety increases the social impairment that Aspergers produces, by decreasing social skill performance and by increasing the frequency of any dysfunctional means that a teen or adult with ASPERGERS 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 teen or adult with ASPERGERS becomes anxious.

The usual range of treatments for anxiety also works for anxiety in the context of ASPERGERS (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 individual with ASPERGERS is concerned, however idiosyncratic those concerns might be to others.

Although substance misuse is less common in teens with ASPERGERS than in nonaffected teens, 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 individuals with ASPERGERS, too.

Challenge 8: individuals with ASPERGERS as aggressors and not just victims

The history of PDD has been one of moms and dads or caregivers pushing for recognition and help for PDD. Individuals with ASPERGERS, like other individuals with PDD, are regularly victimized and even more regularly misunderstood. Naturally, they and their moms and dads 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 individuals with ASPERGERS 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 moms and dads will privately admit: out of 262 consecutive patients with ASPERGERS that the author has seen, 40% of moms and dads reported “hitting individuals” to be a problem.

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

1. A membership card in a deviant group
2. A special interest
3. Defensive
4. Gaining ascendancy
5. Outrage
6. Retaliation

Retaliation

Many individuals with ASPERGERS 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 teen or adult becomes frustrated, feels unfairly treated, or, more rarely, feels excluded. Individuals with ASPERGERS 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 individual with ASPERGERS may be even more unaware of the impact of their aggression than others who have temper tantrums. Spouses or moms and dads 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 moms and dads 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 ASPERGERS.

Individuals with ASPERGERS 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 individual later, who may have had nothing to do with the situation. The target of aggression is most likely to be a teen's mother, or, later in life, a spouse.

Emotional processing is difficult for individuals with ASPERGERS. They cannot tell themselves to “just forget it” or “life's too short to worry so much.” They want answers and they want justice. A teen with ASPERGERS 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 ASPERGERS and may resurface at regular intervals (“rumination”). When they do, it is as if the individual 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 individual with ASPERGERS, 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 a 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 moms and dads 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 individuals who have developmental histories typical of AS (Atypical Aspergers) but whose impairment of nonverbal interpretation is substantially greater than their impairment of nonverbal expression. These kids 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 individuals 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 individual’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 teen may just need to refuse to obey school rules, swear at the teacher, or knock down school furniture. As the individual 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 ASPERGERS is to ally themselves with other marginalized or disruptive kids. By the time that such a child 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 individuals with ASPERGERS 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 individuals with ASPERGERS. The individual with ASPERGERS 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 individual with ASPERGERS will rarely know what to do with it or how to profit from it.

Special interests

Some individuals with ASPERGERS 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 teen or adult with ASPERGERS with a vicarious interest in violence who later became a perpetrator of violence themselves.

Individuals with ASPERGERS 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. Individuals with ASPERGERS 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 individuals with ASPERGERS and is described later.

Defensive aggression

Although there is no reason to suppose the families of individuals with ASPERGERS are more troubled than those of anyone else, there is every reason to think they are as troubled. A teen or adult with ASPERGERS 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 individuals with ASPERGERS 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 youngster 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 teen or adult'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 individual with ASPERGERS 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 individual with Aspergers 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 youngster. 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 individuals with ASPERGERS 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 individual who liked to impersonate doctors and ask women intimate questions about reproduction. Individuals with ASPERGERS 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 ASPERGERS may become addicted to adult internet sites, and a few the author knows have attracted police attention by downloading pictures of kids. Young teens with ASPERGERS may relate better to younger kids than they do to their peers, and may occasionally make inappropriate sexual approaches to them. Older teens and grown-ups may idealize childhood, and may be sexually attracted to kids for that reason. Participation by individuals with ASPERGERS in pedophile rings, indecent assault of kids, or other serious sexual offence against kids is rare, however, in the author's experience.

Stalking is the area in which the sex life of individuals with ASPERGERS gives most cause for concern. “Crushes” are common in adolescence, and young men and women with ASPERGERS often develop them. Although other teens are aware that their feelings are not going to be reciprocated, however, this may not be obvious to the individual with ASPERGERS 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 individual who has become fixated on them. There may be phone calls at home, inappropriate notes, or statements made to others that lead the individual 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 individual. 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.


The Aspergers Comprehensive Handbook 


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Behavioral Interventions for Aspergers Clients

The diagnostic criteria for Aspergers as outlined in DSM IV TR [1] includes in “criterion A” a description of some of the qualitative impairments in social interaction. The list of characteristics includes:

• Failure to develop peer relationships appropriate to developmental level
• Lack of social or emotional reciprocity
• Marked impairment in the use of multiple nonverbal behaviors, such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction

Clinical experience and autobiographies confirm that such people have considerable difficulty with the understanding and expression of nonverbal behaviors and social reciprocity. Regarding peer relationships, when we observe and assess the social play and friendship skills of kids with Aspergers, we recognize a delay in the conceptualization of friendship. The youngster may have an overall intellectual ability within the normal range, but their understanding of friendship skills resembles a much younger youngster. It is not simply a matter of developmental delay, however. There are aspects that are conspicuously unusual for any of the developmental stages [2]. At present, we can only speculate what the consequences may be for a youngster who fails to develop peer relationships that are appropriate for their developmental level, but inevitably there will be lasting effects in several aspects of cognitive, social, and emotional development. When playing in a group, kids learn the value of alternative perspectives and solutions in problem solving. They acquire increasingly sophisticated and successful strategies to resolve conflict and the interpersonal and team skills valued by employers.

Many of the characteristics valued in a close friend become the attributes associated with lasting personal relationships. Clinical experience also suggests that the social isolation of kids with Aspergers in the school playground can increase the youngster's vulnerability to being teased and bullied and a lack of close friends also can be a contributory factor in the development of childhood depression. A delay in social knowledge also can lead to anxiety in social situations that may develop into social phobia, school refusal, and agoraphobia. Thus, we achieve cognitive and affective growth within our circle of friends. It is inevitable that impaired peer relationship skills can result in significant psychopathology.

The DSM IV description of Aspergers includes reference to an association between Aspergers and several secondary mental disorders, including depressive and anxiety disorders. The presence of a secondary mood disorder unavoidably adds to the already considerable difficulty coping with everyday life for people with Aspergers. We are, however, only just beginning to develop effective remedial programs to improve peer relationships, emotional reciprocity, nonverbal communication, and mood [3]. This article examines two frameworks for behavioral interventions, namely the developmental stages in friendship skills, with remedial strategies for each stage, and modifications to Cognitive Behavior Therapy, to accommodate the unusual profile of cognitive skills of people with Aspergers.

The developmental stages in the concept of friendship –

Before considering programs to improve the general understanding of the concept of friendship and specific friendship skills, it is important to determine the youngster's stage of friendship development [4], [5]. Unfortunately, there are no standardized tests to measure friendship skills as there are for language skills, motor development, and cognitive abilities. Assessments can be made by analysis of the individual's answers to specific questions, however, and observation of their interactions with peers. The questions can include:

• How do you make friends?
• What do friends do?
• What makes a good friend?
• What makes you a good friend?
• Who are your friends at school?
• Why do we have friends?
• Why is (name) your friend?

Before the age of 3 years, kids interact with members of their family, but their concept of peers is often one of rivalry for possessions rather than friendship. If another youngster comes to their house, they may hide their favorite toys or become agitated if they have to take turns and share. There may be some parallel play, imitation, and intellectual curiosity in observing and copying what other kids are doing, as it may be fun and may impress a parent, but the youngster does not have the interpersonal insights and skills we associate with the reciprocal elements of being a friend. The first indicators of friendship occur at approximately the age of 3 years.

Stage 1: 3–6 years –

From the ages of 3 to 6 years there is a functional and egocentric conceptualization of friendship. When asked why a particular youngster is their friend, a youngster's reply usually is based on proximity (lives next door, sits at same table) or possessions (they have toys that the youngster admires or wants to use). Toys and play activities are the focus of friendship and the youngster gradually moves from engaging primarily in parallel play to recognizing that some games and activities cannot happen unless there is an element of sharing and turn taking. Cooperation skills are limited, however; the main characteristic of this age group is one-way and egocentric (he helps me or she likes me). Conflict is typified by demands, ultimatums, and physical force.

If a youngster from 3–4 years is asked what they did today, they tend to describe what they played with, whereas after the age of approximately 4 years they start to include who they played with. Social play gradually becomes more than just the construction and completion of the activity. Friendships are transitory, however, and the youngster has their own agenda of what to do and how to do it.

Remedial programs for stage 1 –

If one uses behavioral or learning theory terms, kids with Aspergers need to identify the relevant stimuli or cues and appropriate responses [6]. For example, in stage one, kids learn the cues to join a group of kids without causing disruption or annoyance. An activity can be to brainstorm with the youngster the entry cues, such as someone giving a welcoming gesture or facial expression, a pause in the activity or conversation, or an appropriate act such as returning the ball. These ‘acts’ of the social ‘play’ can be ‘rehearsed’ by identifying a few kids who are keen to help the friendship skills of the youngster with Aspergers. They can be informed that he or she is learning the cues and rules for joining in their play.

The youngster with Aspergers will be trying to join in (under the guidance of an adult) and to recognize the relevant cue. When this occurs they can help the youngster with Aspergers identify the cue and intellectually process the response by momentarily freezing their actions, thereby isolating the cue. This gives the youngster time to identify the cue (which can be pointed out by the adult) and to decide what to say or do in response, perhaps with a prompt and encouragement from the adult. Their response and the entry are then successfully completed. The procedure of identifying the cues in contrived settings and practicing appropriate responses (rehearsal) can be used for many friendship skills. The adult acts as a mentor or stage director, giving guidance and encouragement. It is important that the attitude from adults is one of discovery and guidance so that the youngster with Aspergers does not perceive the activity as being critical of their ability and a public recognition of their social errors.

Young kids with Aspergers may demonstrate more mature interaction skills with adults than with their peers. It is important that adults, especially moms and dads, observe the natural play of the youngster's peers, noting the games, equipment, rules, and language. They can then practice the same play with the youngster but with an adult ‘acting’ as their peer. This includes using what the author describes as ‘youngster speak,’ namely the speech of kids rather than adults. It is important that the adult role-plays examples of being a good friend, and also situations that illustrate unfriendly acts, such as disagreements and teasing. Appropriate and inappropriate responses can be enacted to provide the youngster with a range of responses.

Moms and dads can borrow or buy duplicate equipment that is used at school or is popular with their peers. Once the youngster has rehearsed with an adult who can easily modify the pace of play and amount of instruction, they can have a ‘dress rehearsal’ with another youngster, perhaps an older sibling or mature youngster in their class who can act as a friend to provide further practice before the skills are used openly with their peer group. Another strategy to learn the relevant cues, thoughts, and behavioral script is to write Social Stories that can be used by the youngster to improve their social understanding and abilities [7].

Stage 2: 6–9 years—

At this stage the youngster starts to recognize that they need a friend to play certain games and that that friend must like those games. They become more aware of the thoughts and feelings of their peers and how their actions and comments can hurt, physically and emotionally. The youngster is prepared to sometimes inhibit their intentions and to accept and incorporate the influences, preferences, and goals of their friends in their play. There is less of a dominant/submissive quality, and helping, especially mutual help, is one of the indices of friendship at this stage. A friend may be chosen because of similar interests, and aspects of their friend's character are recognized (he's fun to be with); yet when asked who is their friend, they may nominate someone who is known to be popular rather than a mutually recognized friendship.

The concept of reciprocity (she comes to my party and I go to hers) and the genuine sharing of resources and being fair become increasingly important. When managing conflict, the youngster's view is that the offender must retract the action and a satisfactory resolution is perhaps described as “an eye for an eye.” The concept of responsibility and justice is based on who started the conflict, not what was subsequently done or how it ended. At approximately 8 years of age, the youngster develops the concept of a best friend as not only their first choice for social play, but also as someone who helps in practical terms (he knows how to fix the computer) and in times of emotional stress (she cheers me up when I'm feeling sad).

Remedial programs for stage 2—

In stage 2, kids develop greater cooperation skills when playing with their peers and develop more constructive means of dealing with conflict. It is important that the youngster with Aspergers experiences more cooperative than competitive games. In competitive games there are winners and losers and strict rules. The youngster with Aspergers can require considerable tuition using Social Stories to understand the concepts of being fair and gracious in defeat. Clearly the youngster's recognition of the relevant cues and responses for cooperative play are acknowledged and encouraged.

Specific aspects of cooperative play that need to be recognized, however, are identifying and contributing to the common goal, accepting suggestions rather than being autocratic or indifferent, and giving guidance and encouragement. The youngster acknowledges that when functioning as a cooperative and cohesive group, some activities and goals are easier and quicker to achieve. Role play games can be used to illustrate appropriate and inappropriate actions with some time taken to explain why, in a logical and empathic sense, certain actions are considered friendly or not friendly. The unfriendly actions that are particularly relevant for kids with Aspergers are interruptions, failure to recognize personal body space, inappropriate touch, and coping with mistakes.

During stage 2, there is an increase in social cognition that enables the youngster to benefit from published training programs designed to improve Theory of Mind skills [8]. Programs on Theory of Mind skills also can help the youngster distinguish between accidental and intentional acts. The youngster may consider only the act from their perspective and not consider the cues that would indicate it was not deliberate. Educational programs on emotions also can help the youngster identify the cues that indicate the emotional state of their friend and themselves. The intention is to develop their empathy skills so that they can be recognized as a caring friend.

Finally in stage 2, the author has noted that there can be different coping mechanisms used by females with Aspergers in comparison with males. Females with Aspergers are more likely to be interested observers of the social play of other females and to imitate their play at home using dolls, imaginary friends, and by adopting the persona of a socially able female. This solitary practice of the social play of their peers can be a valuable opportunity to analyze and rehearse friendship skills. Some females with Aspergers can develop a special interest in reading fiction that may be age-appropriate or classic literature. This also provides an insight into thoughts, emotions, and social relationships. It is also noticeable that other females can be more maternal than males and can facilitate the inclusion of a female with Aspergers within an established group of friends. Their social difficulties can be accommodated and guided by peers who value the role of mother or educator. The female with Aspergers also may be popular because she is honest and consistent and less likely to be spiteful.

Stage 3: 9–13 years—

In the third stage, a friend is not simply someone who helps; they are chosen because of special attributes in their abilities and personalities. A friend is someone who genuinely cares and has complimentary attitudes, ideas, and values. There is a strong need to be liked by their peers and a mutual sharing of experiences and thoughts. With such self-disclosure, there is the recognition of being trustworthy and seeking advice not only for practical problems but also for interpersonal issues. There is a need for companionship and greater selectivity and durability in the friendship alliances. At this stage, there is a distinct gender split and peer pressure becomes increasingly important. Peer group acceptance and values become more important than the opinion of moms and dads. Friends also support each other in terms of managing emotions. If the youngster is sad, close friends will cheer them up, or if angry, calm them down to prevent the individual from getting into trouble.

When conflicts occur, friends will use more effective repair mechanisms. They can be less “heated,” with reduced confrontation and more disengagement, admitting making a mistake and recognizing it is not simply a matter of winner and loser. A satisfactory resolution can actually strengthen the relationship. The friend is forgiven and the conflict is put in perspective. These qualities of interpersonal skills that are played out in friendships are the foundation of interpersonal skills for adult relationships.

Remedial programs for stage 3—

In stage 3, there is usually a clear gender preference in the choice of friends. The activities and interests of males, who may be playing team games or sports, may be considered of little value to the male with Aspergers. They also are likely to be less able than their peers in team games and ball skills that may lead to teasing and bullying by males who can be notoriously intolerant of someone who is different. When the male with Aspergers approaches females, they can be more readily included in their activities, and females can be more patient, maternal, and supportive. One of the consequences of being more welcomed by females than by males and spending more time playing with females than males is that the male with Aspergers can imitate the prosody and body language of their female friends. This can result in further isolation and torment from male peers. The youngster needs a balance of same and opposite gender friends, and some social engineering could be necessary to ensure acceptance by both groups.

During stage 3 there is a strong desire for companionship rather than functional play, and the youngster with Aspergers can feel lonely and sad if their attempts at friendship are unsuccessful [9], [10]. They need tuition and guidance, but this may be achieved by discussion with supportive peers and adults. Individual kids who have a natural rapport with a youngster with Aspergers can be guided and encouraged to be a mentor in the classroom, playground, and in social situations. Their advice may be accepted as having greater value than that of moms and dads or a teacher. It is also important to encourage their friends or peers to help them regulate their mood, stepping in and helping the individual calm down if they are becoming agitated or tormented. Friends may need to provide reassurance if the individual is anxious and to cheer them up when sad. The youngster with Aspergers also needs advice and encouragement to be reciprocal with regard to emotional support, and must be taught how to recognize the signs of distress or agitation in their friend and how to respond.

At this stage, the existing remedial programs use strategies to develop teamwork rather than friendship skills. To be attending a program on teamwork skills for sports or employment may be considered more acceptable to the young teenager with Aspergers, who may be sensitive to any suggestion that they need remedial programs to have friends. Another strategy to help the adolescent who is sensitive to being publicly identified as having few friends is to adapt speech and drama classes.

Liane Holliday-Wiley, in her book “Pretending To Be Normal”, describes how she improved her social skills by observation, imitation, and acting [11]. This is an appropriate and effective strategy, especially in stage 3. The individual with Aspergers can learn and practice conversational scripts, self-disclosure, body language, facial expression, and tone of voice for particular situations, and role-play people they know who are socially successful. The adolescent or adult with Aspergers sometimes uses this strategy naturally; however, it is important to ensure that they choose good role models to portray.

Stage 4: 13 years to adult –

In the previous stage there can be a small core of close friends, but in stage 4 the breadth and depth of friendship increases. There can be different friends for different needs, such as comfort, humor, or practical advice. A friend is defined as someone who “accepts me for who I am” or “we think the same way about things.” A friend provides a sense of personal identity and is compatible with one's own personality. An important aspect of the quality of friendship is the ability to accept the self before being able to relate to others at an adult level; otherwise friendships can be manipulated as a means of resolving personal issues. There are less concrete and more abstract definitions of friendship with what may be described as autonomous interdependence. The friendships are less possessive and exclusive and conflict resolved with self-reflection, compromise, and negotiation.

Remedial programs for stage 4—

Because of the developmental delay in the conceptualization of friendship, when the individual with Aspergers reaches stage 4, they have usually left high school and seek friends through work and recreational pursuits. Attempts to change a relationship from colleague or work mate to friend can present some challenges to the young adult with Aspergers. A mentor at work who understands their unusual profile of friendship skills can provide guidance and act as a confidante and advocate. The mentor also can help determine the degree of genuine interest in friendships from the colleague. Sometimes people with Aspergers assume that a friendly act, smile, or gesture has greater implications than was intended. There can be a tendency to develop an intense interest or infatuation with a particular individual. This topic may dominate their time and conversation and can lead to behavior such as stalking.

Conversely, the individual with Aspergers can be desperate to have a friend and may become the recipient of financial, physical, or sexual abuse, through failing to recognize that the other individual's intentions are not honorable. The two-way misinterpretation of signals and intentions can lead to mutual confusion. Relationship counseling can be suggested, but at present counselors often have limited knowledge and experience regarding Aspergers [12]. An interesting development in recent years is older and more mature adults with Aspergers providing guidance and counseling through group counseling sessions organized by adult support groups. These groups are often formed by concerned moms and dads and people with Aspergers who want to meet like-minded people. They meet on a regular basis to discuss topics that range from employment issues to personal relationships.

The Internet has become the modern equivalent of the dance hall in terms of an opportunity for young people to meet. The great advantage of this form of communication to the individual with Aspergers is that they often have a greater eloquence to disclose and express their inner self and feelings through typing rather than conversation. In social gatherings, the individual is expected to be able to listen to and process the other individual's speech (often against a background of other conversations), to immediately reply, and simultaneously analyze nonverbal cues, such as gestures, facial expression, and tone of voice. When using the computer, the individual can concentrate on social exchange using a visual rather than auditory medium.

As in any other situation, the individual with Aspergers may be vulnerable to others taking advantage of their social naivety and desire to have a friend. The individual with Aspergers needs to be taught caution and to not provide personal information until they have discussed the Internet friendship with someone they trust. Genuine and long-lasting friendships can develop over the Internet based on shared experiences, interests, and mutual support. It is an opportunity to meet like-minded people who accept the individual because of their knowledge rather than their social persona. The individual with Aspergers is somewhat egocentric and eccentric but can prove an honest, loyal, and knowledgeable friend.

Mood disorders –

When one considers the diagnostic criteria for Aspergers and the effects of the disorder on the individual's adaptive functioning in a social context, one would expect such people to be vulnerable to the development of secondary mood disorders. The current research indicates that approximately 65% of adolescent patients with Aspergers have an affective disorder that includes anxiety disorders [13], [14], [15], [16], [17], [18] and depression [16]. There is also evidence to suggest an association with delusional disorders [19], paranoia [20], and conduct disorders [21]. We know that comorbid affective disorders in adolescents with Aspergers are the rule rather than the exception, but why should this population be more prone to affective disorders?

Research has been conducted on the family histories of kids with autism and Aspergers and has identified a higher than expected incidence of mood disorders [22], [23], [24], [25]. People with Aspergers could be vulnerable to a genetic predisposition to mood disorders. When one also considers their difficulties with regard to social reasoning, empathy, verbal communication, profile of cognitive skills, and sensory perception, however, they are clearly prone to considerable stress as a result of their attempts at social inclusion. Chronic levels of stress can precipitate a mood disorder. Thus, there may be constitutional and circumstantial factors that explain the higher incidence of affective disorders.

The theoretic models of autism developed within cognitive psychology and research in neuropsychology also provide some explanation as to why such people are prone to secondary mood disorders. The extensive research on Theory of Mind skills confirms that people with Aspergers have considerable difficulty identifying and conceptualizing the thoughts and feelings of other people and themselves [26], [27], [28], [29], [30]. The interpersonal and inner world of emotions seems to be uncharted territory for people with Aspergers.

Research on executive function in subjects with Aspergers suggests characteristics of being disinhibited and impulsive, with a relative lack of insight that affects general functioning [31], [32], [33], [34]. Impaired executive function also can affect the cognitive control of emotions. Clinical experience indicates there is a tendency to react to emotional cues without cognitive reflection. Research with subjects with autism using new neuroimaging technology also has identified structural and functional abnormalities of the amygdala [35], [36], [37], [38], which is known to regulate a range of emotions, including anger, fear, and sadness. Thus, we also have neuroanatomic evidence that suggests there will be problems with the perception and regulation of the emotions.

Managing anxiety, depression, and anger –

When clinicians diagnose a secondary mood disorder, they need to know how to modify standard psychologic treatments to accommodate the unusual cognitive profile of people with Aspergers. As the primary psychologic treatment for mood disorders is cognitive behavior therapy (CBT), this article now examines such modifications based on our knowledge of the disorder and preliminary clinical experience.

CBT has been designed and refined over several decades and has proven to be effective in changing the way an individual thinks about and responds to feelings such as anxiety, sadness, and anger [39], [40]. CBT focuses on aspects of cognitive deficiency in terms of the maturity, complexity, and efficacy of thinking, and cognitive distortion in terms of dysfunctional thinking and incorrect assumptions. Thus, it has direct applicability to patients with Aspergers who are known to have deficits and distortions in thinking.

The therapy has several components, the first being an assessment of the nature and degree of mood disorder using self-report scales and a clinical interview. The subsequent stage is affective education with discussion and exercises on the connection between cognition, affect, and behavior, and the way in which people conceptualize emotions and construe various situations. Subsequent stages are cognitive restructuring, stress management, self-reflection, and a schedule of activities to practice new cognitive skills. Cognitive restructuring corrects distorted conceptualizations and dysfunctional beliefs. The individual is encouraged to establish and examine the evidence for or against their thoughts and build a new perception of specific events. Stress management and cue controlled relaxation programs are used to promote responses incompatible with anxiety or anger. Self-reflection activities help the individual recognize their internal state, monitor and reflect on their thoughts, and construct a new self-image. A graded schedule of activities is also developed to allow the individual to practice new abilities that are monitored by the therapist.

Assessment –

There are several self-rating scales that have been designed for kids and adults with specific mood disorders that can be administered to patients with Aspergers. There are specific modifications that can be used with this clinical group, however, as they may be more able to accurately quantify their response using a numeric or pictorial representation of the gradation in experience and expression of mood. Examples include an emotion “thermometer,” bar graphs, or a “volume” scale. These analogue measures are used to establish a baseline assessment and are incorporated in the affective education component. To minimize word retrieval problems, multiple-choice questions can be used in preference to open-ended, sentence-completion tasks. A pictorial dictionary of feelings also can be used as additional cues for a diary or logbook completed during the therapy by the patient.

The assessment includes the construction of a list of behavioral indicators of mood changes. The indicators can include changes in the characteristics associated with Aspergers, such as an increase in time spent engaged in solitude or their special interest, rigidity, or incoherence in their thought processes, or behavior intended to impose control in their daily lives and over others. This is in addition to conventional indicators such as a panic attack, comments indicating low self worth, and episodes of anger. It is essential to collect information from a wide variety of sources, as kids and adults with Aspergers can display quite different characteristics according to their circumstances. For example, there may be little evidence of a mood disorder at school but clear evidence at home. Moms and dads and educators also can complete a daily mood diary to determine whether there is any cyclical nature to, or specific triggers for, mood changes.

The clinician also needs to assess the coping mechanisms and vocabulary of emotional expression of the individual with Aspergers. Although there are no standardized tests to measure such abilities, some characteristics have been identified by clinical experience. For example, discussion with moms and dads can indicate that the youngster displays affection, but the depth and range of expression is usually limited and immature for their chronologic age. Their reaction to pleasure and pain can be atypical, with idiosyncratic mannerisms that express feeling excited, such as hand flapping, or a stoic response to pain and punishments.

Examples of characteristics that moms and dads may be concerned about are a lack of apparent gratitude or remorse and paradoxic and atypical responses to particular situations. For example, the youngster may giggle when expected to show remorse [41] and be remarkably quick in resolving grief. They also may misinterpret gestures of affection, such as a hug, with the comment that the squeeze was perceived as uncomfortable and not comforting. Their emotional reactions also can be delayed, perhaps with an expression of anger some days or weeks after the event.

Their coping or emotional recovery mechanisms need to be assessed and can include characteristics such as retreating into solitude, increasing time spent engaged in a special interest, reading fantasy literature, and playing computer games. Some people internalize their reaction with self-blame and low self-esteem, whereas others externalize their reaction, becoming critical of others and developing an arrogant and intolerant personality. The former may show signs of depression and anxiety, whereas the latter are often referred for problems with anger management. Different emotions can prevail at particular times of the day, however, for example, being anxious before school and angry when returning home. It is also valuable to assess not only how the youngster repairs their own feelings but also how they repair the feelings of others. Research suggests that people with Aspergers use fewer of the available cues in facial expression and body language to infer emotional states [42].

The clinician needs to assess the individual's ability to identify the cues of emotional states in others and to know when specific words and actions are anticipated, for example, providing gestures and words of affection when a family member or friend is sad or reassurance when they are anxious. Questions can be asked, such as “How would you know when your mother is feeling sad?” and “What would you do if she were crying?” Another area of assessment is their awareness of the impact of their own mood state and associated behavior on the thoughts and feelings of others, namely an assessment of empathy. Unfortunately we do not have any standardized tests to measure empathy; accordingly, most information is obtained from discussion with the individual with Aspergers and their family for examples of a relative lack of empathic response.

Affective education—

Affective education is the next stage in a course of CBT and an essential component for those with Aspergers. The main goal is to learn why we have emotions, their use and misuse, and the identification of different levels of expression. A basic principle is to explore one emotion at a time as a theme for a project. The choice of which emotion to start with is decided by the therapist, but a useful starting point is happiness or pleasure. A scrapbook can be created that illustrates the emotion. For young kids, this can include pictures of people expressing the different degrees of happiness or pleasure, but can be extended to pictures of objects and situations that have a personal association with the feeling, for example, a photograph of a rare lizard for an individual with a special interest in reptiles. For adults, the book can illustrate the pleasures in their life, with a list based on the song My Favorite Things. The content also can include the sensations that may elicit the feeling, such as aromas, tastes, and textures. The scrapbook can be used as a diary to include compliments, and records of achievement, such as certificates and memorabilia.

At a later stage in therapy, the scrapbook can be used to change a particular mood but it also can be used to illustrate different perceptions of a situation. If the therapy is conducted in a group, the books can be compared and contrasted. Talking about trains may be an enjoyable experience for one participant but perceived as remarkably boring or dominating for another. Part of the education is to explain that although this topic may create a feeling of well being in the one participant, their attempt to cheer up another individual by talking about trains may not be a successful strategy, perhaps producing a response that they did not expect. One of the interesting aspects that the author has noticed is that individuals with Aspergers tend to achieve enjoyment primarily from knowledge, interests, and solitary pursuits, and less from social experiences, in comparison with other client groups. They are often at their happiest when alone.

The affective education stage includes the therapist describing and the individual discovering the salient cues that indicate a particular level of emotional expression in facial expression, tone of voice, body language, and context. The face is described as an information center for emotions. The typical errors include not identifying which cues are relevant or redundant, and misinterpreting cues. The therapist uses a range of games and resources to “spot the message” and explain the multiple meanings; for example, a furrowed brow can mean anger or bewilderment, or may be a sign of aging skin. A loud voice does not automatically mean that an individual is angry.

Once the key elements that indicate a particular emotion have been identified, it is important to use an “instrument” to measure the degree of intensity. The therapist can construct a model “thermometer,” “gauge,” or volume control, and can use a range of activities to define the level of expression. For example, they can use a selection of pictures of happy faces and place each picture at the appropriate point on the instrument. During the therapy it is important to ensure the individual shares the same definition or interpretation of words and gestures and to clarify any semantic confusion. Clinical experience has indicated that some individuals with Aspergers can use extreme statements such as “I am going to kill myself” to express a level of emotion that would be more moderately expressed by another individual. During a program of affective education, the therapist often has to increase the individual's vocabulary of emotional expression to ensure precision and accuracy.

The education program includes activities to detect specific degrees of emotion in others but also in oneself, using internal physiologic cues, cognitive cues, and behavior. Technology can be used to identify internal cues in the form of biofeedback instruments such as auditory EMG and GSR machines. The individual and those who know them well can create a list of their physiologic, cognitive, and behavioral cues that indicate their increase in emotional arousal. The degree of expression can be measured using one of the special instruments used in the program, such as the emotion thermometer. One of the aspects of the therapy is to help the individual perceive their “early warning signals” that indicate emotional arousal that may need cognitive control; perhaps, using a metaphor, they can be the warning lights and instruments on a car dashboard.

When a particular emotion and the levels of expression are understood, the next component of affective education is to use the same procedures for a contrasting emotion. After exploring happiness, the next topic explored would be sadness; feeling relaxed would be explored before a project on feeling anxious. The individual is encouraged to understand that certain thoughts or emotions are “antidotes” to other feelings, for example, some strategies or activities associated with feeling happy may be used to counteract feeling sad.

Some people with Aspergers can have considerable difficulty translating their feelings into conversational words. There can be a greater eloquence, insight, and accuracy using other forms of expression. The therapist can use prose in the form of a “conversation” by typing questions and answers on a computer screen or techniques such as comic strip conversations that use figures with speech and thought bubbles [7]. When designing activities to consolidate the new knowledge on emotions, one can use a diary, e-mail, art, or music as a means of emotional expression that provides a greater degree of insight for individual and therapist.

Other activities to be considered in affective education are the creation of a photograph album that includes pictures of the individual and family members expressing particular emotions, or video recordings of the individual expressing their feelings in real-life situations. This can be particularly valuable to demonstrate their behavior when expressing anger. Another activity entitled “Guess the message” can include the presentation of specific cues, such as a cough as a warning sign or a raised eyebrow to indicate doubt. It is also important to incorporate the individual's special interest in the program. For example, the author has worked with people whose special interest has been the weather and has suggested that their emotions are expressed as a weather report. There are several kids reading books that have a particular emotion as a theme and self-help books for adolescents with specific mood disorders that can be used as a form of bibliotherapy. We also now have books and computer programs that provide a social and emotional curriculum that includes activities for affective education for kids with Aspergers [43], [44].

Cognitive restructuring –

Cognitive restructuring enables the individual to correct distorted conceptualizations and dysfunctional beliefs. The process involves challenging their current thinking with logical evidence and ensuring the rationalization and cognitive control of their emotions. The first stage is to establish the evidence for a particular belief. People with Aspergers can make false assumptions of their circumstances and the intentions of others. They have a tendency to make a literal interpretation, and a casual comment may be taken out of context or may be taken to the extreme. For example, a young teenage male with Aspergers was once told his voice was breaking. He became extremely anxious that his voice was becoming faulty and decided to consciously alter the pitch of his voice to repair it. The result was an artificial falsetto voice that was incongruous in a young man. A teenage female with Aspergers overheard a conversation at school that implied that a female must be slim to be popular. She then achieved a dramatic weight loss in an attempt to be accepted by her peers.

We are all vulnerable to distorted conceptualizations, but people with Aspergers are less able to put things in perspective, seek clarification, and consider alternative explanations or responses. The therapist encourages the individual to be more flexible in their thinking and to seek clarification, using questions or comments such as “Are you joking?” or “I'm confused about what you just said.” Such comments also can be used when misinterpreting someone's intentions such as, “Did you do that deliberately?” and to rescue the situation after the patient has made an inappropriate response with a comment such as, “I'm sorry I offended you,” or “Oh dear, what should I have done?”

To explain a new perspective or to correct errors or assumptions, comic strip conversations can help the individual determine the thoughts, beliefs, knowledge, and intentions of the participants in a given situation [7]. This technique involves drawing an event or sequence of events in storyboard form with stick figures to represent each participant, and speech and thought bubbles to represent their words and thoughts. The individual and therapist use an assortment of fibro-tipped colored pens, with each color representing an emotion. As they write in the speech or thought bubbles, the individual's choice of color indicates their perception of the emotion conveyed or intended. This can clarify the individual's interpretation of events and the rationale for their thoughts and response. This technique can help the individual identify and correct any misperception and determine how alternative responses might affect the participants' thoughts and feelings.

One common effect of misinterpretation is the development of paranoia. Our knowledge of impaired Theory of Mind skills in the cognitive profile of kids with Aspergers suggests a simple explanation. The youngster can have difficulty distinguishing between accidental or deliberate intent. Other kids will know from the context, body language, and character of the individual involved that the intent was not to cause distress or injury. People with Aspergers, however, can focus primarily on the act and the consequences: “He hit me and it hurt, so it was deliberate,” whereas other kids would consider the circumstances: “He was running, tripped, and accidentally knocked my arm.” There may need to be training in checking the evidence before responding and developing more accurate “mind reading” skills.

Cognitive restructuring also includes a process known as “attribution retraining.” The individual may blame others exclusively and not consider their own contribution, or they can excessively blame themselves for events [2]. One aspect of Aspergers is a tendency for some individuals to adopt an attitude of arrogance or omnipotence where the perceived focus of control is external. Specific people are held responsible and become the target for retribution or punishment. These people have considerable difficulty accepting that they themselves have contributed to the event. The opposite can occur, however, when the individual has extremely low self-esteem and feels personally responsible, which results in feelings of anxiety and guilt. There also can be a strong sense of what is right and wrong and conspicuous reaction if others violate the social “laws” [2]. The youngster may be notorious as the class “policeman,” dispensing justice but not realizing what is within their authority. Attribution retraining involves establishing the reality of the situation, the various participants' contributions to an incident, and determining how the individual can change their perception and response.

Cognitive restructuring also includes activities that are designed to improve the individual's range of emotional repair mechanisms. The author has extended the use of metaphor to design programs that include the concept of an emotional toolbox to “fix the feeling.” Patients know that a toolbox usually includes a variety of tools to repair a machine, and discussion and activities are used to identify different types of “tools” for specific problems associated with emotions.

One type of emotional repair tool can be represented by a hammer, which signifies physical “tools” such as going for a walk or run, bouncing on a trampoline, or crushing empty cans for recycling. The intention is to repair emotions constructively by a safe physical act that increases the heart rate. One individual explained how a game of tennis “takes the fight out of me.” A paintbrush can be used to represent relaxation tools that lower the heart rate, such as drawing, reading, or listening to calming music. A two-handle saw can be used to represent social activities or people who can help repair feelings. This can include communication with someone who is known to be empathic and able to dispel negative feelings. This can be by spoken conversation or typed communication, enabling the individual to gain a new perspective on the problem and providing some practical advice. A picture of a manual can be used to represent thinking tools that are designed to improve cognitive processes. This includes phrases that encourage reflection before reaction. Evan, a young man with Aspergers, developed his “antidote to poisonous thoughts.”

The procedure is to provide a comment that counteracts negative thoughts, for example, “I can't cope” (negative or poisonous thought) “but I can do this with help” (positive thought or antidote). The individual also is taught that becoming emotional can inhibit their intellectual abilities in a particular situation that requires good problem-solving skills. When frustrated, one needs to become “cool” and less rigid in one's thinking to solve the problem, especially if the solution requires social cognition.

There is a discussion of inappropriate tools (with the comment that one would not use a hammer to fix a computer) to explain how some actions, such as violence and thoughts such as suicide, are not appropriate emotional repair mechanisms. For example, one individual would slap himself to stop negative thoughts and feelings. Another tool that could become inappropriate is to retreat into a fantasy world (perhaps imagining they are a superhero), or to plan retaliation. The use of escape into fantasy literature and games can be a typical tool for ordinary adolescents but is of concern when this becomes the exclusive coping mechanism; the border between fantasy and reality may be unclear and the thinking becomes delusional. Cognitive restructuring can be used to return to concrete thinking.

Also of concern is when daydreams of retaliation to teasing and bullying are expressed in drawings, writing, and threats. Although this is a conventional means of emotional expression, there is a concern that the expression is misinterpreted as an intention to carry out the fantasy or indeed may be a precursor to retaliation using weapons. Unusual tools also are discussed. For example, during a group CBT session on sadness, a teenage female explained that, “Crying doesn't work for me, so I get angry.” Clinical experience suggests that tears may be rare as a response to feeling sad, with a more common response to sadness being anger. The program includes the development of a range of conventional means of emotional expression and repair mechanisms and an explanation as to why some of their reactions are misinterpreted by others.

Clinical experience also has indicated that humor and imagination can be used as thinking tools. Those with Aspergers are not immune to the benefits of laughter, can enjoy jokes typical of their developmental level, and can be remarkably creative with puns and jokes [45]. One tool or mechanism that seems to be unusual is that of being quick at resolving grief and serious tragedies. This characteristic can be of concern to the individual's family, who expect the classic signs of prolonged and intense grieving; they consider the individual as uncaring, yet the rapid recovery is simply a feature of Aspergers.

Other interesting characteristics are the inclusion of talking to pets as a social tool, sometimes in preference to talking to friends, and the positive effects on mood from helping someone. This strategy can be effective for individuals with Aspergers who also need to be needed and can improve their mood by being of practical assistance. Finally, the concept of a toolbox can be extremely helpful in enabling the individual with Aspergers not only to repair their own feelings but also to repair the feelings of others. They often benefit from tuition in learning what tools to use to help friends and family and which tools others use, so that they may borrow tools to add to their own emotional repair kit.

Stress management –

People with Aspergers are prone to greater stress in their daily lives than their peers. Social interaction, especially with more than one individual, in which they have to identify, translate, and respond to social and emotional cues and cope with unexpected noise levels, inevitably increases stress to a point where the individual's coping mechanisms may collapse. A stress assessment based on our knowledge of Aspergers will help the clinician determine what are the natural and idiosyncratic stressors for the individual [46]. Subsequently, an effective stress management program can be designed as an essential component of CBT.

Traditional relaxation procedures using activities to encourage muscle relaxation and breathing exercises can be taught to individuals with Aspergers as a counter conditioning procedure, but one must also consider the circumstances in which they are particularly prone to stress. Environmental modification can significantly reduce stress. This can include reducing noise levels, minimizing distractions, and having a safe area for periods of solitude to relax or concentrate on schoolwork. If the clinician recognizes that a particular event is a major cause of stress, then it would be wise to consider whether the source of stress could be avoided, for example, recommending the temporary suspension of homework. At school, one option for the youngster who becomes stressed in the playground is to be able to withdraw to the school library, or for the worker who is anxious about socializing during the lunch break, to complete a crossword puzzle or go for a walk. Another source of stress for kids and adults is unexpected changes in work demands or circumstances. They may need advance preparation and time to adjust their work schedule.

Cue-controlled relaxation is also a useful component of a stress management plan. One strategy is for the individual to have an object in their pocket that symbolizes or has been classically conditioned to elicit feelings of relaxation. For example, a teenage female with Aspergers was an avid reader of fiction, her favorite book being The Secret Garden. She kept a key in her pocket to metaphorically open the door to the secret garden, an imaginary place where she felt relaxed and happy. A few moments touching or looking at the key helped her to contemplate a scene described in the book and to relax and achieve a more positive state of mind. Adults can have a special picture in their wallet such as a photograph of a woodland scene, which reminds the individual of the solitude and tranquility of such a place

Self-reflection—

In conventional CBT programs, the individual is encouraged to self-reflect to improve insight into their thoughts and feelings, promoting a realistic and positive self-image and enhancing the ability to self-talk for greater self-control. The concept of self-consciousness may be different for people with Aspergers, however. There may be a qualitative impairment in the ability to engage in introspection. Research evidence, autobiographies, and clinical experience have confirmed that some individuals with Aspergers and high functioning autism can lack an “inner voice” and think in pictures rather than words [47], [48]. They also have difficulty translating their visual thoughts into words. As an adolescent with Aspergers explained in relation to how visualization improves his learning (a picture is worth a thousand words), “I have the picture in my mind but not the thousand words to describe it.” Some have an “inner voice” but have difficulty disengaging mind and mouth, and vocalize their thoughts to the confusion or annoyance of those near them. Obviously, the therapy needs to accommodate such unusual characteristics.

The modifications include a greater use of visual material and resources using drawings, role-play, and metaphor, and less reliance on spoken responses. It is interesting that many individuals have a greater ability to develop and explain their thoughts and emotions using other expressive media, such as typed communication in the form of e-mail or a diary, music, art, or a pictorial dictionary of feelings [3].

When talking about themselves, young adults with autism and Aspergers do not anchor their self-attributes in social activities and relationships or use as wide a range of emotions in their descriptions as their peers [49]. They are less likely to describe themselves in the context of their relationships and interactions with other people. The self-reflection component of CBT may have to be modified to accommodate a concept of self primarily in terms of physical, intellectual, and psychologic attributes.

The therapy includes programs to adjust the individual's self image to be an accurate reflection of their abilities and the neurologic origins of their disorder. Some time needs to be allocated to explaining the nature of Aspergers and how the characteristics account for their differences. The author recommends that as soon as the youngster or adult has the diagnosis of Aspergers, the clinician needs to carefully and authoritatively explain the nature of the disorder to their family, but the youngster also must receive a personal explanation. This is to reduce the likelihood of inappropriate compensatory mechanisms to their recognition of being different and concern as to why they have to see psychologists and psychiatrists.

They also may be concerned as to why they have to take medication and receive tuition at school that is not given to their peers. Over the last few years, there have been several publications and programs developed specifically to introduce the youngster or adolescent to their diagnosis. The choice of which book or program to use is determined by the clinician, but it is important that the explanations are accurate and positive. The individual will perceive the diagnosis as it is presented. If the approach is pessimistic, the reaction can be to trigger a depression or to reject the diagnosis and treatment. The clinician also can recommend the individual read some of the autobiographies written by kids [50], [51] and adults [52], [53]. The subsequent discussion is whether and how to tell other people of the diagnosis, especially extended family, neighbors, friends, and colleagues.

When an accurate perception of self has been achieved, it is possible to explore cognitive mechanisms to accommodate their unusual profile of abilities, which the author describes as their talents and vulnerabilities, and to consider the directions for change in self-image. One approach is using the metaphor of a road map with alternative directions and destinations [54], and a Personal Construct Assessment [55].

Practice—

Once the individual has improved their cognitive strategies to understand and manage their moods at an intellectual level, it is necessary to start practicing the strategies in a graduated sequence of assignments. The first stage is for the therapist to model the appropriate thinking and actions in role-play with the individual, who then practices with the therapist or other group members, vocalizing thinking to monitor their cognitive processes. A form of graduated practice is used, starting with situations associated with a mild level of distress or agitation. A list of situations or triggers is created from the assessment conducted at the start of the therapy, with each situation written on a yellow Post-It note. The individual uses the thermometer or measuring instrument originally used in the affective education activities to determine the hierarchy or rank order of situations. The most distressing are placed at the upper level of the instrument. As the therapy progresses, the individual and therapist work through the hierarchy using fading or systematic desensitization using a schedule of graduated exposure to encourage the individual to be less emotionally reactive [56].

After practice during the therapy session, the individual has a project to apply their new knowledge and abilities in real-life situations. The therapist obviously needs to communicate and coordinate with those who are supporting the individual in real-life circumstances. After each practical experience, therapist and individual consider the degree of success, using activities such as comic strip conversations to debrief, reinforcement for achievements, and a “boasting book” or certificate of achievement. It also helps to have a training manual for the individual that includes suggestions and explanations. The manual becomes a resource for the individual during the therapy but is easily accessible information when the therapy program is complete. One of the issues during the practice will be generalization. People with Aspergers tend to be rigid in terms of recognizing when the new strategies are applicable in a situation that does not obviously resemble the practice sessions with the psychologist. It is necessary to ensure that strategies are used in a wide range of circumstances and no assumption made that once an appropriate emotion management strategy has proved successful, it will continue to be used in all settings.

The duration of the practice stage depends on the degree of success and list of situations. Gradually the therapist provides less direct guidance and support to encourage confidence in independently using the new strategies. The goal is to provide a template for current and future problem, but it will probably be necessary to maintain contact with the individual for some time to prevent relapse.

Aspects of CBT can be incorporated into conventional family therapy [57] and social skills groups [58], and can be conducted as the primary psychologic treatment. Other specialists may be consulted during the program, especially if the individual has signs of attention deficit disorder, Tourette syndrome, and specific learning problems. Predictors of a successful outcome may include the complexity and degree of expression of the mood disorder and diagnostic characteristics, the intellectual capacity of the individual, and their circumstances and support. Two positive predictors that have been recognized by the author from clinical experience are a sense of humor and imagination.

Finally our scientific knowledge in the area of psychologic therapies and Aspergers is remarkably limited. We have case studies [59], but at present, no systematic and rigorous independent research studies that examine whether CBT is an effective treatment with this clinical population. This is despite the known high incidence of mood disorders, especially among adolescents with Aspergers. As a matter of expediency, a clinician may decide to conduct a course of CBT based on the known effectiveness of this form of psychologic treatment in the general population. We have yet to establish whether it is universally appropriate, however, and to confirm the modifications to accommodate the unusual characteristics and profile of abilities associated with Aspergers.



Best Comment:

Three months ago I wrote that son, 27, was finally getting his own apartment about 15 minutes away from our house.

As usual, I have a pattern of unrealistic hopes and dreams that clash with hard cold reality. I am thrilled that son has made it three months, that is a huge milestone. But there have been bumps, big and small.

Small bump: I thought I anticipated and prepared for every possible thing that could he could encounter, but I forgot about this one: adjusting the thermostat! For one thing he doesn't feel cold or heat in the same way we do and for another, seventy-two degrees has no more meaning for him than thirty-two degrees. It is just a word. So that was a huge shock when we saw his first utility bill and it was as much as for our much larger house. So, up went another sign tacked right above the thermostat listing "at-home" temperatures, "going out" temperatures and settings. It complements the reminder by the front door with a checklist for keys, phone etc, and the one over the light switch in the bedroom reminding night time meds and routines, and the one in the bathroom to brush teeth and shave. His apartment is practically wallpapered with the reminders.

Funny bump: the second month in the apartment, he had a light bulb burn out and called the maintenance man! In retrospect, not sure he had ever changed a light bulb while living at home. But, now he has a package of them tucked in the pantry shelf and the knowledge of how to change one now.

Huge bump: he informed us after the fact that he'd filed a police report on someone he met online, someone living in a state thousands of miles away with a "goth" appearance who had threatened him after chatting.

Month one was a honeymoon. I was congratulating myself on how well he was doing, keeping up with his stuff. Month two was a disaster. Losing keys, losing cell phone, losing wallet, oversleeping and missing the bus for work. Month three is a mix.

We had to take back his newly-purchased, used truck for violating the "no eating while driving rule." And the "no cell phone while driving rule" and, as it turned out, he started a nasty habit of smoking little cigars in the truck, too, and burned six holes in the vinyl floor (slightly distracting!). Again, he managed to come up with a brand new contingency that I had not prepared for.

So, all the talks with all his support group and mentors about distracted driving and his sincere-sounding promises to "never do that" went out the window. He didn't follow thru with that at all, so we confiscated his transportation. That was hard for him. Most of our conversations ended up with one of us hanging up on the other. Lots of announcements that it "is his life and I should butt out." At one point, we were visiting him for about the second or third time. Apartment was a disaster with empty food containers everywhere but in the garbage. Spilled Ramen noodles and rice on the floor…as I suggested it should be cleaned up, he suggested that "why didn't we just leave?" So, we just stood up and walked out the door with a "see ya." I think he was shocked and that was the intended purpose.

So here we are ending month three. I am trying to let him handle his problems and difficulties more and more. It would be so nice, however, if I felt he learned from them, but he seldom seems to.

We are gradually working out an uneasy phone relationship. He is bored and very lonely, despite the fact he spent 95% of his time here last year in his room, he had us around. And now it is just him. He has one friend and do they do little together. So I constantly feel guilty that we should be his friend group and do more and more stuff with him socially. I get frustrated that he calls more than five times a day with NOTHING to say…holding a conversation with the other end and his one word answers when I am busy and he is bored is draining! I have pointed him towards a social group here for Aspies, not interested. He quit the orchestra he was in (and seemed to love) for no reason he could articulate. I have sent him info on churches, and on and on and on.

So, I am holding my breath…he would be so much happier in a supported living environment. But that doesn't exist in our county, though I am working trying to make it happen someday. However, I need one "right now!" I have a step daughter that is helping a little bit with taking him to grocery and bringing him over for dinner occasionally and I am very grateful for that. I feel like I should be more grateful that he is out and living on his own…but again, my expectations were a lot higher. He still has no job, does two volunteer positions where he's been for MONTHS and even though they say what a great job he's doing, they can't seem to find enough money to hire him for even four hours a week. So that contributes to being bored and being on a very small income.

In reading this over, I feel very mean and petty. I should be more grateful with what he is able to do…and hopefully, he will be able to find a job. I should count my blessings more and not complain so much. But today I just feel like venting at the unfairness of it all!

But what do I do, how do I cope with a child who has had all this special schooling, therapies out the wazoo, thousands of dollars in counseling…and it seems to have made little difference in his outcome. Bang, bang, bang…that is me banging my head against the wall!


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

Social rejection has devastating effects in many areas of functioning. Because the ASD child tends to internalize how others treat him, rejection damages self-esteem and often causes anxiety and depression. As the child feels worse about himself and becomes more anxious and depressed – he performs worse, socially and intellectually.

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How to Prevent Meltdowns in Children on the Spectrum

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

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Parenting Defiant Teens on the Spectrum

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

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Older Teens and Young Adult Children with ASD Still Living At Home

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

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Parenting Children and Teens with High-Functioning Autism

Two traits often found in kids with High-Functioning Autism are “mind-blindness” (i.e., the inability to predict the beliefs and intentions of others) and “alexithymia” (i.e., the inability to identify and interpret emotional signals in others). These two traits reduce the youngster’s ability to empathize with peers. As a result, he or she may be perceived by adults and other children as selfish, insensitive and uncaring.

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Highly Effective Research-Based Parenting Strategies for Children with Asperger's and HFA

Become an expert in helping your child cope with his or her “out-of-control” emotions, inability to make and keep friends, stress, anger, thinking errors, and resistance to change.

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