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Aspergers: Diagnosis and Clinical Features

The diagnosis of Aspergers requires the demonstration of qualitative impairments in social interaction and restricted patterns of interest, criteria which are identical to autism. In contrast to autism, there are no criteria in the cluster of language and communication symptoms, and onset criteria differ in that there should be no clinically significant delay in language acquisition, cognitive and self-help skills. Those symptoms result in significant impairment in social and occupational functioning. In some contrast to the social presentation in autism, children with Aspergers find themselves socially isolated, but are not usually withdrawn in the presence of others.

Typically, they approach others but in an inappropriate or eccentric fashion. For example, they may engage the interlocutor, usually an adult, in one-sided conversation characterized by long-winded, pedantic speech, about a favorite and often unusual and narrow topic. They may express interest in friendships and in meeting people, but their wishes are invariably thwarted by their awkward approaches and insensitivity to the other person's feelings, intentions, and non-literal and implied communications (e.g., signs of boredom, haste to leave, and need for privacy).

Chronically frustrated by their repeated failures to engage others and form friendships, some children with Aspergers develop symptoms of an anxiety or mood disorder that may require treatment, including medication.

They also may react inappropriately to, or fail to interpret the valence of the context of the affective interaction, often conveying a sense of insensitivity, formality, or disregard to the other person's emotional expressions.

They may be able to describe correctly, in a cognitive and often formalistic fashion, other people's emotions, expected intentions and social conventions; yet, they are unable to act upon this knowledge in an intuitive and spontaneous fashion, thus losing the tempo of the interaction.

Their poor intuition and lack of spontaneous adaptation are accompanied by marked reliance on formalistic rules of behavior and rigid social conventions. This presentation is largely responsible for the impression of social naiveté and behavioral rigidity that is so forcefully conveyed by those with Aspergers.

Although significant abnormalities of speech are not typical of children with Aspergers, there are at least three aspects of communication patterns that are of clinical interest:

1. The communication style of children with Aspergers is often characterized by marked verbosity. The youngster may talk incessantly, usually about a favorite subject, often in complete disregard to whether the listener might be interested, engaged, or attempting to interject a comment, or change the subject of conversation. Despite such long-winded monologues, the child may never come to a point or conclusion. Attempts by the interlocutor to elaborate on issues of content or logic, or to shift the interchange to related topics, are often unsuccessful.

2. Speech may often be tangential and circumstantial, conveying a sense of looseness of associations and incoherence. Even though in a very small number of cases this symptom may be an indicator of a possible thought disorder, the lack of contingency in speech is a result of the one-sided, egocentric conversational style (e.g., unrelenting monologues about the names, codes, and attributes of innumerable TV stations in the country), failure to provide the background for comments and to clearly demarcate changes in topic, and failure to suppress the vocal output accompanying internal thoughts.

3. Speech may be marked by poor prosody, although inflection and intonation may not be as rigid and monotonic as in autism. They often exhibit a constricted range of intonation patterns that is used with little regard to the communicative functioning of the utterance (e.g., assertions of fact, humorous remarks). Rate of speech may be unusual (e.g., too fast) or may lack in fluency (e.g., jerky speech), and there is often poor modulation of volume (e.g., voice is too loud despite physical proximity to the conversational partner). The latter feature may be particularly noticeable in the context of a lack of adjustment to the given social setting (e.g., in a library, in a noisy crowd).

Young people with Aspergers typically amass a large amount of factual information about a topic in a very intense fashion. The actual topic may change from time to time, but often dominates the content of social interchange. Frequently the entire family may be immersed in the subject for long periods of time. This behavior is peculiar in the sense that oftentimes extraordinary amounts of factual information are learned about very circumscribed topics (e.g., snakes, names of stars, TV guides, deep fat fryers, weather information, personal information on members of congress) without a genuine understanding of the broader phenomena involved. This symptom may not always be easily recognized in childhood since strong interests in certain topics, such as dinosaurs or fashionable fictional characters, are so ubiquitous. However, in both younger and older kids typically the special interests become more unusual and narrowly focused.

Children with Aspergers may have a history of delayed acquisition of motor skills such as pedaling a bike, catching a ball, opening jars, and climbing outdoor play equipment. They are often visibly awkward and poorly coordinated and may exhibited stilted or bouncy gait patterns and odd posture. Neuropsychologically, there is often a pattern of relative strengths in auditory and verbal skills and rote learning, and significant deficits in visual-motor and visual-perceptual skills and conceptual learning. Many people exhibit high levels of activity in early childhood, and, as noted, may develop anxiety and depression in adolescence and young adulthood.

My Aspergers Child: Preventing Meltdowns

Asperger Syndrome: Epidemiology

Given the lack of consensual definitions of diagnosis until recently, it is not surprising that the prevalence of Aspergers is unknown, although a rate of 2 to 4 in 10,000 has been reported.

There is little doubt that the condition is more prevalent in boys than girls, with a reported ratio of 9 to 1.

In the past few years, there have been a proliferation of parent support groups organized around the concept of Aspergers, and there are indications that this diagnosis is being given by clinicians much more frequently than even just a few years ago; there are also indications that Aspergers is currently functioning as a residual diagnosis given to normal-intelligence young people with a degree of social disabilities who do not fulfill criteria for autism, overlapping in this way, with the DSM-IV term PDD-NOS.

Possibly the most common usage of the term Aspergers is as synonymous or a replacement to autism in children with normative or superior IQs. This pattern has diluted the concept and reduced its clinical utility. Empirical validation of specific diagnostic criteria is badly needed, although this will have to await reports of rigorous studies employing standard diagnostic procedures, and “validators” truly independent of the diagnostic definition such as neuropsychological, neurobiological and genetic data.

The History Behind "Aspergers"

Aspergers  is characterized by impairments in social interaction and restricted interests and behaviors as seen in autism, but its early developmental course is marked by a lack of any clinically significant delay in spoken or receptive language, cognitive development, self-help skills, and curiosity about the environment. All-absorbing and intense circumscribed interests and one-sided verbosity as well motor clumsiness are typical of the condition, but are not required for diagnosis.

In 1944, Hans Asperger, an Austrian pediatrician with interest in special education, described four kids who had difficulty integrating socially into groups. Unaware of Kanner's description of early infantile autism published just the year before, Asperger called the condition he described "autistic psychopathy", indicating a stable personality disorder marked by social isolation.

Despite preserved intellectual skills, the kids showed marked paucity of nonverbal communication involving both gestures and affective tone of voice, poor empathy and a tendency to intellectualize emotions, an inclination to engage in long winded, one-sided, and sometimes incoherent speech, rather formalistic speech (he called them "little professors"), all-absorbing interests involving unusual topics which dominated their conversation, and motoric clumsiness. Unlike Kanner's patients, these kids were not as withdrawn or aloof; they also developed, sometimes precociously, highly grammatical speech, and could not in fact be diagnosed in the first years of life.

Discarding the possibility of a psychogenic origin, Asperger highlighted the familial nature of the condition, and even hypothesized that the personality traits were primarily male transmitted. Aspergers work, originally published in German, became widely known to the English speaking world only in 1981, when Lorna Wing published a series of cases showing similar symptoms. Her codification of the syndrome, however, blurred somewhat the differences between Kanner's and Aspergers descriptions, as she included a small number of girls and mildly mentally retarded kids, as well as some kids who had presented with some language delays in their first years of life. Since then, several studies have attempted to validate AS as distinct from autism without mental retardation, although comparability of findings has been difficult due to the lack of consensual diagnostic criteria for the condition.3

Aspergers was not accorded official recognition before the publication of ICD-10 and DSM-IV, although it was first reported in the German literature in 1944. Aspergers work was known primarily in German speaking countries, and it was only in the 1970's that the first comparisons with Kanner's work were made, primarily by Dutch researchers such as Van Krevelen, who were familiar with both English and German literatures. The initial attempts at comparing the two conditions were difficult because of major differences in the patients described – Kanner's patients were both younger and more cognitively impaired. Also, Aspergers conceptualization was influenced by accounts of schizophrenia and personality disorders, whereas Kanner had been influenced by the work of Arnold Gesell and his developmental approach.

Attempts at codifying Aspergers prose into a categorical definition for the condition were made by several influential researchers in Europe and North America, but no consensual definition emerged until the advent of ICD-10. And given the reduced empirical validation of the ICD-10 and DSM-IV criteria, the definition of the condition is likely to change as new and more rigorous studies emerge in the near future.

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Aspergers Children and Social Skills Interventions

In this post, we will look at the ingredients that are critical to making “social skills interventions” successful for kids with Aspergers. Here you will find basic principles for teaching social skills that capitalize on the strengths of such kids, while specifically addressing their deficits:

Make the abstract concrete—

Relative to some academic skills, teaching social competence involves abstract skills and concepts. Because kids with Aspergers tend to be concrete and literal, the abstract nature of these interpersonal skills such as kindness, reciprocity, friendships, thoughts, and feelings makes them especially difficult to master. A first critical step is to define the abstract social skill or problem in clear and concrete terms. The behavior must be explicitly operationalized and the youngster taught to identify it and differentiate it from other behaviors (Is this a friend or not a friend? Is this a quiet or a loud voice? Were you being teased or not? Are you following directions or not?). Kids learning eye contact may respond better to the more concrete “point your eyes” than to “make eye contact” or even “look at me.” Personal space can be defined concretely as “an arm away” or “a ruler away” instead of “too close.” “If-then” rules can be taught when the social behaviors involved are predictable and consistent. For example, “If someone says ‘thank you,’ then you say ‘you're welcome’.” Short menus of behavior options can be presented for particular social situations for kids to choose among (e.g., three things you can do to deal with teasing).

Visually-based instruction is another example of a way to make the abstract concrete. Many kids with Aspergers, even those who are high functioning and who have considerable verbal skill, demonstrate a visual preference or learn best with visually cued instruction. Incorporating visual cues, prompts, and props to augment verbal instruction can make abstract social skills more tangible and easily understood. Pictures can be used to define concepts or clarify definitions. Examples of intermediate and finished products can be used to demonstrate steps in activities or projects. Written lists can be used to summarize discussion topics. Voice volume or affect intensity can be depicted visually, in a thermometer-like format. In the PROGRESS Curriculum, a large “Z” made of cardboard is used to depict the back-and-forth of a conversation. Similarly, kids are taught to look at the eyes of others using a cardboard arrow. They are instructed to hold the arrow on the side of their face, next to their right eye, and point it at the eyes of the person to whom they are speaking. This aligns their face and eyes in the correct direction. Once this skill has been practiced using this concrete visual cue, use of the arrow is faded. When a youngster needs a reminder to look in someone's eyes, the arrow can be held up unobtrusively as a cue. Such visual prompts can then be faded and the skill can be practiced in more natural contexts.

Structure and predictability—

In most group therapy, including social skills training, topics and session content change from week to week. One way to ease the anxiety that this may cause, while also facilitating transitions between activities and increasing comprehension, is to provide structure, predictability, and routines. Specifically, maintaining a consistent opening, lesson, and closing format, regardless of session topic, can be helpful, as can predictable group rituals, such as weekly songs or joke time. For example, younger kids might always begin with a singing routine that welcomes each participant by name. Older kids and adolescents might start each session with a routine in which each member recounts a positive and a difficult event from the previous week. The greeting might always be followed by an instructional activity. Although the content, focus, and technique would change from week to week, the sequence of this instruction always following the group greeting would provide some measure of predictability. Group instruction might always be followed by a snack, with accompanying conversation on an identified topic of interest or joke telling. A closing routine should always signal the end of the session. This routine could include a review of the session's topic, a song, a story, a quiz, or a goodbye to each participant. The essential ingredient is the predictability of the routine, not its specific content.

Visual cues, such as picture schedules and written lists, also can clarify the sequence of events during group and prepare members for upcoming transitions, new activities, or unexpected changes. The session schedule used in the PROGRESS Curriculum resembles a traffic light with picture-word icons depicting each activity. The icons in the upper-most green circle of the traffic light begin the session, those in the yellow circle occur during the middle of the session, and those in the bottom red circle close the group. As an activity is completed, the icon is removed from the traffic light.

Engaged transitions—

Another way to ease the anxiety and behavior difficulties often associated with transitions is to focus participants' attention on a concrete task that naturally leads them from one activity to the next. For example, when transitioning from the structured group activity to the snack period, kids might work in pairs to put away materials and prepare the room for the snack. This focuses them on a specific task, as opposed to the change of activity. The PROGRESS Curriculum transitions kids from the opening group circle to the structured skill development activity in a novel way. The transition is facilitated by an activity called “Pick-and-Pass,” which uses a large container decorated with question marks that contains objects, pictures, or words that are used in the subsequent activity. Each youngster removes an item from the can and passes it to the next youngster as the rest of the group chants “Pick and pass” while clapping. This is usually met with great excitement as the kids select an item or wait for the can to be passed, easing the transition between activities.

Scaffolded language support—

There is a complex interplay between social skills, cognitive function, and language. Kids with Aspergers have not only social challenges, but also communication and cognitive challenges. It is therefore vitally important to consider the cognitive and language abilities of the kids participating in social skills intervention and to adapt the intervention as needed. Social skills curricula can be designed to meet the needs of kids with Aspergers at a variety of ages, developmental levels, and language abilities. One way to do this is to group kids by general language ability, so that those who need extra structure, support, and language scaffolding are treated together. Then activities can be adapted to the amount and level of language support and structure required by the participants. For kids who do not have fluent language, directions and activities need to be visually clear, concrete, and hands-on. Language models or scripts can be provided so that group members need little or no spontaneous language to participate. Conversely, activities for kids with fluent expressive language (e.g., those with Asperger syndrome or high functioning autism) would require greater independence in generating spontaneous language. Fewer concrete supports would be needed and activities enabling them to practice social skills in more natural social interactions would be more appropriate.

The following example demonstrates how an activity from the PROGRESS Curriculum has been modified for kids at two different language ability levels. In the friendship unit, one session is devoted to learning more about other people. One activity uses a board game format, in which the cards that advance players around the board require them to ask other group members personal questions. For kids with more fluent language, a card might read “Find out three things (name) likes to do.” For kids with greater language difficulties, a comparable card would use words and picture icons to read “(name), what is your favorite color?” If the peer cannot respond verbally, pictures of different colors are available so he or she can point. Thus, fewer expressive language skills are required. Questions are more specific, address concrete attributes, and avoid abstract concepts. Responses are more circumscribed and less open-ended in this format. Yet the goal of finding out about others is fulfilled, just as for kids with more verbal fluency.

Another example of language scaffolding from the PROGRESS Curriculum comes from the conversation skills unit, in an activity that teaches contingent commenting. Kids with fluent language sit in a circle, spin a topic spinner that visually depicts several categories (e.g., food, animals, movies), and comment on the topic indicated. This same activity is redesigned for kids with limited language skills to provide significantly more language modeling, visual prompts, and concrete directions. Kids are given a card with a carrier phrase written on it, such as “I have a ___.” The group leader reads the words for the kids, if necessary. A tray of interesting objects is then placed in the middle of the circle. Each youngster selects an object and uses the carrier phrase to comment, “I have a (item from tray).”

The length and complexity of the opening and closing songs also can be adapted to the language abilities of the participants. For example, in the PROGRESS Curriculum, the opening song for kids with limited language use is (to the tune of Goodnight Ladies): “Hello (name), hello (name), hello (name), I'm glad you came to group.” This song is elaborated for kids who are functioning at a higher language level by including an extra verse tailored to preview the session's topic. For example, during a lesson on teasing, the opening song is (to the tune of Frere Jacques): “Hello (name), hello (name). How are you? How are you? Sometimes people tease me, I don't like it, how about you? How about you?”

Multiple and varied learning opportunities—

Although many kids with Aspergers demonstrate strengths in visual processing, there is still diversity in their interests, preferences, and learning styles. Some kids learn best while moving their bodies, others need to sit and focus to learn. Some kids learn well through reading, others are not yet literate. Some kids find music calming and facilitating, whereas others find it a distraction or even an irritant. Just as kids with typical development demonstrate multiple “intelligences”, so too do kids with Aspergers. Varying the learning opportunities, techniques, and approaches within and across sessions maximizes the likelihood that the particular learning styles or preferences of participants will be tapped. Different learning modalities include construction tasks, games, role plays, craft or cooking projects, gross motor activities, reading or writing tasks, drawing or art activities, and countless others. At different times, kids can practice working in dyads, small groups, and large groups.

As an example, the PROGRESS Curriculum's session focused on sharing starts by reading a story about sharing. The kids then transition into pairs by selecting objects from the Pick and Pass can that are part of a pair of toys (e.g., miniature baseball and miniature bat) and matching up with their partner. In these pairs, they then share a toy that encourages turn-taking. At snack, the kids pair up with the peer beside them and are given a single, large piece of cake. They must agree on how to decorate the cake together. Once completed, they share the piece of cake by cutting it in half. The group then plays a group game, “Musical Shares” (an analog of Musical Chairs). The kids walk around on mats while music is playing. Each time the music stops, they must find a mat to share with a new friend. In this way, sharing is practiced in a variety of different ways and through a variety of different activities.

“Other”-focused activities—

In positive social group environments, the members typically have a sense of community and friendship that develops over time, through repeated interactions. For kids with Aspergers, a feeling of “group belonging” is rarely achieved. The desire to attend to the interests of others, get to know others, and do things for others is often impaired. One way to facilitate the development of these skills is to ensure that all or most activities in the curriculum are “other”-focused. Nothing that can be done in a pair or group is ever done alone. Kids help others, rather than help themselves. For example, in art activities, kids can make something for a peer, rather than for themselves. They may be required to find out information about a peer, and then use that peer's favorite colors and preferences to develop a picture for him or her. During snack, kids can serve each other, rather than themselves. If they need more food, they must request it from another youngster rather than get it on their own. Through repeated, required social opportunities and practice, cooperation and partnership become the culture of the group, over time creating an environment of group camaraderie. Through this process, it is hoped that the participants come to recognize that social interaction can be rewarding and enjoyable.

Perspective taking and sharing the interests of others is also encouraged in the PROGRESS Curriculum through a weekly routine called “Special Spotlight.” During this part of the session, one youngster shares a topic of special interest with the group. Another youngster in the group is designated as the “spotlight partner.” His or her role is to learn about the “spotlight” youngster's interest and bring something to share or discuss related to that topic. This exercise serves to expand the partner's own repertoire of interests and knowledge, while also improving the ability to take another person's perspective. The other kids in the group are encouraged to make comments or ask questions about the spotlight topic. Assignments for the “special spotlight” and “spotlight partner” are made in advance so that the kids can prepare by bringing relevant items, developing a list or script, and so forth. Topics chosen by the kids have ranged from pets, dinosaurs, and video games to bus schedule collections, lectures on the solar system, and theme park brochures. Although the primary goal of the “spotlight” activity is to promote interest in others, it also serves as a way to focus or channel the circumscribed interests of group members into a specific part of the session, so that they do not distract from the rest of the group's activities.

Fostering self-awareness and self-esteem—

Most kids with Aspergers experience frequent social failure and rejection by peers. Because social encounters are seldom reinforcing, kids with Aspergers often avoid social interaction. Over time, they may develop negative attitudes about themselves and others. The poor self-esteem that may result makes it difficult to further attempt social interaction and thus, the cycle continues. Therefore, another essential ingredient of social skills interventions is fostering self-awareness, self-appreciation, and self-acceptance. It is only within a positive and nurturing environment that a straightforward examination of strengths and weaknesses can be achieved and the process of self-value initiated. Opportunities for self-awareness and self-acceptance can be incorporated throughout the curriculum. Positive attributes and strengths should be the focus whenever possible. Many kids with Aspergers are more used to a focus on their deficits and express surprise that Aspergers also involves much strength (e.g., memory, visualization, reading, rule-following, passion and conviction). To foster self-acceptance, group leaders can regularly comment on members' strengths. Kids can be taught the concept of complimenting and can be regularly required to compliment peers. In the University of Utah's adolescent group, participants give positive and constructive feedback to each other at the end of each session.

The adolescent group also includes a specific unit devoted to self-awareness. In one session, the game Bingo is adapted to focus on aspects of the Aspergers style and help individuals become more aware and accepting of their “quirks” or behaviors. The Bingo card lists strengths and weaknesses associated with the autism spectrum (e.g., “hard to point my eyes,” “like to flap my hands,” “know a lot about computers,” “good memory”). The group leader then reads these characteristics aloud one by one, with participants placing a marker on any trait they notice in themselves. Occasionally, several participants achieve “Bingo” (five characteristics in a row, column, or diagonal) at once. The teens are usually surprised and fascinated to find that they share behaviors with others. This activity can be especially helpful in the development of self-acceptance, as many comment that they have never met anyone else like themselves.

Select relevant goals—

Difficulty with social skills is not isolated to kids with Aspergers. Many kids exhibit difficulties with a variety of social skills for a variety of different reasons. As described at the beginning of this article, however, curricula developed to address general social impairments do not adequately tackle the social skills deficits specific to Aspergers. Thus, when selecting social goals for intervention, it is critical to prioritize and address the skill deficits that are most relevant and salient to Aspergers. For example, eye contact is probably a greater priority than manners or negotiation skills, given its centrality to social interaction (e.g., to monitor other people's reactions, to indicate interest or engagement). Related to this, it is important that all activities have an underlying social purpose. In our experience, it is a great deal easier to design fun activities than it is to design fun activities that target specific and relevant goals.

The PROGRESS Curriculum addresses five broad topic units that the authors believe are particularly relevant to Aspergers: basic interactional skills, conversational skills, play and friendship skills, emotion-processing skills, and social problem-solving skills. The Interaction Basics unit teaches the nonverbal behaviors that are important to social interaction, such as appropriate eye contact, social distance, voice volume, and facial expression. The second unit, Conversation Skills, covers basic elements of how to start, maintain, and end a conversation. The more subtle aspects of conversations, like taking turns in conversation, joining a conversation already underway, making comments, asking questions of others, using nonverbal indicators to express interest, and choosing appropriate topics, are included. The third unit teaches basic friendship and relationship skills. The concept of friendship and the important qualities of being a good friend are discussed, listed, and practiced. This unit also includes greeting others and responding to greetings, joining groups, sharing and taking turns, compromising, and following group rules. Next comes a unit on understanding thoughts and feelings of self and other people. The curriculum begins by increasing emotion recognition and vocabulary skills, as many kids with Aspergers are not familiar with emotional terms beyond the basics. Perspective taking and empathy training are included in this unit, requiring the kids to act out situations in which different people think different things or have different underlying motives. The final unit addresses social problem solving, such as what to do when a youngster is teased, feels left out, or is told “No.” The focus is on the development of practical solutions, coping mechanisms, and self-control for these difficult interpersonal situations.

It is important to make clear to the participants how and why the goals selected are relevant for them. For most people, whether they have Aspergers or not, learning is facilitated when the necessity of the learning or its application is made clear. Teaching the relevance of the social skill is believed to facilitate improved skill awareness and use in natural, daily settings for kids with Aspergers. One way to do this is to use Social Stories to introduce new social skills. Social Stories are written, sometimes illustrated, vignettes that present social information. Although they provide some specific guidance about what to do or say in a social situation, they also highlight social cues, peoples' motives or expectations, and other information that the person with Aspergers may not have appreciated. Thus, Social Stories can provide a rationale for why the youngster or kids should do or say what we tell them they should do or say. In addition, regular reminders regarding the importance of the skill being practiced should be regularly infused within group activities. For example, if a youngster is not making eye contact when requesting an item from a peer, he or she might be reminded, “Point your eyes and body so your friend knows you are talking to him.”

In addition to choosing group goals that are relevant to Aspergers, individualized goals can be identified for each group member. Each youngster should be aware of his or her personal target goal and should be reinforced for meeting it throughout the session. Individual goals may be consistent across weeks, or vary from session to session, depending on the needs of the youngster. A variety of different systems can be used, including reinforcement charts posted on the wall, individual goal or point cards, or cups in which the goal is affixed and tokens are placed. Reinforcement schedules can be individualized as needed to best promote skill acquisition and maintenance. For new or emerging skills, kids might be reinforced the moment the skill is displayed spontaneously. Once the skill is established, maintenance can be promoted by reinforcing after longer time periods or at the end of an activity or session.

Sequential and progressive programming—

Skills taught in isolation or without adequate practice and repetition most likely result in poor skill mastery and limited generalization and use. It is essential that the skills and behaviors addressed across the curriculum have relevance to each other and build on each other. As more complex, higher-order skills are learned, basic skills learned early on must continually be practiced. This not only promotes skill maintenance, but also integrates the individual skills into a larger, more fluid, social competence. Complex behaviors must be broken down into specific skills that are taught sequentially and then integrated.

This goal is achieved in the PROGRESS Curriculum in the following manner. Each topic unit consists of five sessions. In the first week of the curriculum, the new unit topic and set of skills are introduced, defined, or described (Introduction Phase). In the second and third weeks (Skill Development Phase), specific individual skills or situations are addressed and practiced. In the fourth week (Integration Phase), skills practiced individually in the previous 3 weeks are integrated and practiced. In the last week (Generalization Phase), the group meets out in the community to practice specific skills, socialize, and participate in natural age-appropriate activities with invited peers and friends. For example, the first session of the conversation unit describes the importance of conversation and outlines the three distinct skills that follow: starting, maintaining, and ending a conversation. Then one skill, such as greeting, is introduced. The following week, another skill is taught (e.g., making a comment) while the first skill (greeting) continues to be practiced and reinforced. In the next week, yet another skill is added (e.g., asking a question), as the previous two skills continue to be practiced and reinforced. In the fourth week, all three of the previously isolated skills are integrated (e.g., greet a peer: “Hi, Mike!”, make a comment: “I like your picture”, then ask a question: “How did you do it?”). In the final week, the skills are practiced in less structured and more typical environments during a community outing; for example, the group gathers at a local restaurant and practices conversation skills while eating pizza.

A similar sequential and progressive plan should exist across the curriculum units. Skills learned in the first unit should be relevant to and practiced in the subsequent units. For example, eye contact is first introduced as an isolated skill in Unit One, Basic Interactional Skills. In Unit Two, Conversation Skills, group members are regularly reminded to point their eyes at their peers as they learn to greet, make comments, and ask questions. In Unit Three, Play and Friendship, the kids, as needed, are encouraged to make eye contact and use appropriate greetings as they learn to share and take turns with others, and so forth.

Programmed generalization and ongoing practice—

Skill mastery and generalization require significant practice and repetition in a variety of settings. As described earlier, providing multiple and varied learning opportunities promotes generalization, as does practice of skills in more naturalistic settings through community outings. Another way to promote generalization is to practice skills with a variety of different people. Unfamiliar adults or peers can be invited to group parties or to snack so that kids have the opportunity to practice their new skills with others.

When group social skill intervention is provided in a clinic setting, transfer of skills to the home or school also can be enhanced through “generalization activities” (akin to homework). A written handout can be provided to moms and dads, teachers, or others, briefly describing the week's target skill and describing a specific activity that practices this skill outside of the group. For example, to generalize conversation skills, moms and dads might be prompted to ask their youngster to tell them three things that happened at school each day, using visual prompts (e.g., photographs or relevant objects) or multiple-choice lists as necessary. Or kids might call another group member on the phone to practice back-and-forth conversation, using a list of prearranged topics or a script as necessary. Generalization may be further enhanced through a concurrent parent training group that apprises moms and dads of the skills their kids are learning and provides ideas on how to practice the skills or implement specific techniques at home or in the neighborhood.

Generalization of behaviors learned in a social skills group to the “real world” may be greater when the group is offered in a natural social setting, such as a school. At the least, the same training model and format described in this article can be implemented in a school, rather than a clinic. Additional methods will likely be necessary to generalize such training to more natural school settings, however, if the training is conducted in a segregated setting (e.g., a separate room, with special education personnel). Written handouts describing the youngster's target skills and individual goals can be provided to the classroom teacher or other school staff. The handout might identify natural opportunities throughout the school day when staff can prompt students to use their skills with peers (e.g., during a small group classroom activity, at lunch). A description of how to best prompt the youngster can be included. It is ideal if classroom teachers or other relevant school staff have the opportunity to observe the social skills group to learn and use the same prompting techniques and teaching strategies. Generalization also might be enhanced by including the social skills group leader in the Individualized Education Plan meeting so that social skills goals can be included in the youngster's overall educational goals and objectives. The benefits of offering social skills intervention and generalization within the school setting include teaching skills in the environment in which they will be used, creating positive social communities with peers who interact daily, and having regular contact among staff members who can promote skill use in natural settings.

More resources for parents of children and teens with High-Functioning Autism and Asperger's:

==> How To Prevent Meltdowns and Tantrums In Children With High-Functioning Autism and Asperger's

==> Parenting System that Significantly Reduces Defiant Behavior in Teens with Aspergers and High-Functioning Autism

==> Launching Adult Children with Asperger's and High-Functioning Autism: Guide for Parents Who Want to Promote Self-Reliance

==> Teaching Social Skills and Emotion Management to Children and Teens with Asperger's and High-Functioning Autism

==> Parenting Children and Teens with High-Functioning Autism: Comprehensive Handbook

==> Unraveling The Mystery Behind Asperger's and High-Functioning Autism: Audio Book


==> Parenting System that Reduces Problematic Behavior in Children with Asperger's and High-Functioning Autism

Aspergers Tantrums, Rage, and Meltdowns

At the moment if the situations are not done exactly his way he has a meltdown. Symptoms are: Extreme ear piercing screaming, intense crying, to falling down on the floor saying he is going to die. I have tried to tell him to breathe but his meltdown is so intense that his body just can't listen to words. 

==> Continue to full article...

Anxiety and Sleep Problems

Question

My 11 yr old daughter was diagnosed with Asperger's just about a year ago. She is very very high functioning, well we though until about 6 months ago, when her anxiety took over and she had a mental and physical breakdown. Her anxiety continues to plague her, although, she is better than she was.

Sleeping is a huge issue for her, always has been since she was 18 months old. The hard thing is, is that no calming techniques seem to help or better yet, she is not willing to even try some. Not to mention the fact that nothing is consistent, yet it’s all consistent. That something is always the matter, here or there. She is very smart, very stubborn, and very very pre pubescent. She was always quirky, and pretentious, but this anxiety is very difficult to maintain daily life without know what she can handle and what she can’t. No rhythm or reason. She is on anti anxiety meds, only at night... but sometimes do the opposite. They make her cranky and anxious, frustrated and sometimes they knock her right out. But nothing.... keeps her sleeping. We need to re visit the Neurologist and see if there is something other than anxiety causing such issues. But, for right now, life is different every day and night. It’s getting harder on me, because we have to tip toe around the house at night, to try not to wake her or she cries until I lay with her or she makes me stay on the couch until she falls asleep there. So, I am wiped out too. It’s to the point where I need to take a mild sedative to fall asleep because I am always in anticipation of her waking up.

This is her first year of Middle school was a complete disaster. Beyond disaster. So, for this coming year, I am going to look into alternative education methods that fit her strengths and giftings. So, that is it in a short nut shell. I could type for days, on details of our life with an Aspie, but this is what I feel to share so far. Thanks for listening.

Answer

Re: Anxiety—

While most people associate anxiety with an emotional response to stress, a major factor in stress and anxiety is the physical response to external stimulus. The stress response in the brain sends signals to the body to prepare us to handle a perceived danger or threat, and this induces a physical state of tension that can add to the emotional reaction to problem situations. As the body stores tension over time, a state of chronic anxiety can occur. Proper diet and regular exercise can help alleviate the physical tension associated with stress and help lower anxiety levels.

Eating a balanced diet consisting of whole grains, fruits, vegetables, and lean meats can help strengthen the body’s resistance to stress. These foods contain nutrients that are essential for healthy body function. Combining complex carbohydrates available from whole grains such as whole wheat bread or whole oats with protein helps to keep blood sugar levels steady, avoiding the stress of the sugar crashing cycle that can add to physical stress. Drinking plenty of water helps, too, as dehydration is just added stress to the body.

Avoiding stimulants such as caffeine also helps to reduce stress. Stimulants put the body in a constant state of heightened agitation and can facilitate a kind of false stress response when no stress is present. Refined sugar also creates stress as the body feels a rush of energy and then a crash in blood sugar. Processed foods should be avoided in favor of whole foods as they don’t contain the nutrients needed for strengthening the body’s ability to handle stress.

Exercise also helps to alleviate stress and anxiety. It does this in several ways. Engaging in physical activity increases the flow of oxygen through the body and stimulates the nervous system, and this can help to release the tension held in the body and induce a relaxed state of calm, making it easier to deal with stressful situations when they arise. Hormones such as endorphins are released during exercise, and these hormones help to alleviate pain and create a mental state of well-being. Exercise also helps to create a more positive self-image, provides a distraction from worries, and facilitates a sense of motivation and positive direction.

It doesn’t have to be overwhelming or exhausting to provide benefits against anxiety. Just 10 minutes of moderate exercise a day can create a more positive outlook. Choose an activity that you enjoy. Try becoming a member of a group to provide the added benefit of social interaction and fun. To see benefit, make sure to move at least 3 to 4 times a week, and remember to start small and build slowly based on your level of fitness. Overdoing it too soon can cause problems and make it hard to keep up the routine.

Adopting a more physically healthy lifestyle based on balance is the key to a healthy emotional outlook and reduction in problems such as anxiety. Wellness can be looked at as a lifestyle choice, and making good decisions about diet and exercise is one way to improve the quality of life.

Re: Sleep problems—

Here are some suggestions:

• Accept some awakenings. The experts stress that nighttime awakenings are perfectly normal -- much more normal, in fact, than the elusive solid eight hours people think they should be getting. Most people will roll over and go back to sleep, but those with insomnia become conditioned to feel anxious when they awake during the night. You need to accept that you will arouse some, so reassure yourself in the middle of the night that nothing catastrophic will happen if you are awake for a while.

• Acupuncture may help reduce her anxiety and induce deeper sleep.

• Cognitive behavioral therapy is often used in cases like this, and the experts agree that it could help. CBT aims to stop the behaviors that are perpetuating the insomnia. Typically, a therapist will work with a patient for four to eight weeks -- in sessions that last from 30 minutes to two hours -- to assess, diagnose, and treat the underlying problem, such as relationship worries. The therapist will teach the patient things like progressive-relaxation techniques and point out actions that are getting in the way of deep sleep, such as rehashing conversations that occurred earlier in the day.

• Distract her brain by trying a relaxation technique, like focusing on her breathing.

• Keep the glaring electric clock off the bedside table. Clock watching will only increase your anxiety about being awake.

• Make an appointment at a sleep clinic, which can be a smart step for people with a long history of sleep issues. Most often this involves office visits (which will not necessarily be overnight observations), during which the patient will undergo a physical examination and work with a doctor to assess and diagnose the cause of the sleep problems.

• Modulate her exposure to light, which could reset her internal clock gradually. Too much light at night will push her clock even later, so the key is to keep the lights dim the closer she gets to bedtime. Also maximize her light exposure first thing in the morning. If she can go outside in bright sunlight for some exercise, that would provide a double whammy of wakefulness.

• Pay even more attention to her evening routine and her sleep environment. Good sleep habits don't necessarily solve sleep problems, but they do create a foundation for improved sleep. Good habits include things such as keeping the bedroom cool and dark, using a fan or a white-noise machine to create a blanket of sound, and using the bed exclusively as a place for sleeping -- and not for watching television, for example.

• Take 0.3 milligram of an over-the-counter melatonin supplement about 20 minutes before bedtime since the production of melatonin (a naturally produced hormone that helps regulate circadian rhythms) drops off as we age.

• Try wearing earplugs.

• Use caution regarding over-the-counter sleep medications, since they contain some type of antihistamine, which can stay in the body for a long time. It takes about 18 hours for your body to clear out 50 percent of the active drug. For most of your waking hours, it will still be in your system, making you drowsy.

• Work on keeping her sleep environment quieter, such as using an air conditioner or a fan, as well as blackout shades to block street light.

Some parents enforce a strict bedtime and a regular bedtime routine as a way of calming their child for sleep. Another good trick is to use flannel sheets and to experiment with pajama fabrics until you find one that your child tolerates. Enclosing the child in a sleeping bag or under a bed tent can help. So does playing "white noise" in the background.

Your pediatrician may prescribe sleeping pills such as Sonata, Ambien, Desyrel or Serzone.


More resources for parents of children and teens with Asperger's and High-Functioning Autism:
 
COMMENTS:

•    Anonymous said… How can anxiety be managed in hfa children please?
•    Anonymous said… I also recommend melatonin - completely natural (no script needed) and works very well for my daughter, who is now 16. For the anxiety, she started on Zoloft a year ago and it helps her keep it at a manageable level. That plus cognitive behavioural therapy has been a winning combo. My daughter has improved dramatically in the past year.
•    Anonymous said… I do not have any advise. I will pray for all of you as you journey this rocky road. My Grandson Tyler is an aspie. His Dad, my son, has just written a book, Love That Boy, that may help you not feel so alone.
•    Anonymous said… I hear and feel you. My soon to be 16 year old daughter began severe anxiety and depression right about that age. Sleep has always been an issue;however, we had done several things with her in her early years that have luckily carried over into her teen years that do help. Melatonin helped for a while, but I have found that meditation helps the most. What is happening is that she can't stop the multitude of thoughts that come into her head and leaves her body in a state of fight or flight. Spray a little lavender near her pillow (calming), have her soak in a hot bath before bed (you can add lavender essential oil to the bath too), if she will allow it - lay down next to her and take turns telling each other what silly things pop up in your head while falling asleep. This helps to keep the anxious thoughts at bay. If she is really wound up, try just holding her feet. It sounds strange, but there is a hugely calming effect that this has. On the bright side, my daughter has decided to not depend on anti-anxiety/depression meds anymore and is doing great! Every day is a new day, with new challenges and hopefully some victories as well. Stay strong. She will get through this.
•    Anonymous said… I'd like to know if anyone has successfully gone "back" to school and graduated after experiencing all of the above^^^^symptoms? And if so, what worked for you?
•    Anonymous said… I'm experiencing something simile with my 10 year old daughter who is going through the diagnosis process. It especially comforting to me to read these comment as Esmes symptoms are starting to present themselves more severely now. Never been good at sleep since day1, now she is starting to say she won't go to school on a daily basis, cries all the time, tremendous anger outbursts. It's mentally exhausting for her and us. It's helpful for us as parents knowing this is not exclusive to Esme as everyone knows, we are having to find out a lot of this info by ourselves as the diagnosis process is so slow
•    Anonymous said… Melatonin has worked wonders with our kids. We have also been subscribed Clonodine with success though I am not sure there is much of a difference between them.
•    Anonymous said… Melatonin to help her sleep could work. No sleep, even if she denies being tired, will make her very overtired and emotional and then it won't matter what you do. Sleep is #1
•    Anonymous said… My 7 year old daughter has epilepsy and we thought adhd, but now the neuro is saying he thinks it could be aspergers, we are screening her for it now.... she is a sweet girl but gets bad rage fits all the time and it's not the medicine, she had them before the medicine. If she does have this she is very high functioning, I just can't be sure. But school, sleep every day its a struggle with her when she is not happy. When she doesn't get her way watch out and I don't mean regular kid meltdowns, she doesnt seem to care about punishment or time outs or anything. Rewards barely work on her. I find myself pleading and begging her all the time to stop with the behavior. Once it is over, she is back to her normal self and exhausted. The neuro says it has nothing to do with her epileptic spike. We are going to take her to a psychiatrist soon as well. We recently got IEP for her because of her slow slow pace. She is smart, but can't always focus and can't always complete her work.
•    Anonymous said… My daughter has the same issues. Cannabis oil isn't legal in Oklahoma yet. I wish it was.
•    Anonymous said… My six year old son is the same way, except for instead of anxiety and depression, he experiences anxiety and aggression. He has been a horrible sleeper since day one. We have tried several different meds to help his behavior, different counsellors, sports, and nothing takes his aggression towards our family away. He's fine with everyone else. Ugh. It's a daily struggle I wouldn't wish on anyone.
•    Anonymous said… My son is 13 and had struggled and struggles with all the above! He has good times and bad times that seem to come in waves. I have found a few helpful things....Anxiety medication has really helped calm his Anxiety and that in turn helps his friendships, his OCD And calms his mind so his ticks are not as bad as normal. I also have a weighted blanket, and use Melatonin to help him sleep. If all else fails I lay beside him, just having me with him helps soothes! I've even had late night walks, swinging time on the swing set or having him run laps around the yard to calm him at night. Hope this has given a few ideas to those that are struggling like I am. Each day is a new day! Never know what version of your child your going to see...such a stressful thing! Love and patience above all!!
•    Anonymous said… Not for under 18 though
•    Anonymous said… Our 10 year old use to wake up 1-3 times a night for almost eight years. Melatonin and a weighted blanket has finally straightened out his sleeplessness.
•    Anonymous said… Please check into the safe and effective cbd cannabis oil treatment. It is a miracle waiting for her.
•    Anonymous said… Saphris works wonders for high functioning Aspergers..taken at night sleep for 10 hrs straight
•    Anonymous said… Sounds like my 10 year old boy, our challenges are really more about the anxiety bought about through his Aspy needs for structure, routine etc than the other Aspy challenges. We had not slept through the night for the years and had tried everything from weighted blankets, meditation, counselling, bed routines (multiple), and sleeping medications to little success. In December his Paedetritian put him on a half tablet of anti anxiety medication (Prozac) due to his anxiousness around school and unexpected activities associated with being the youngest of four, He is a different boy. Within a month he was sleeping through the night and he s now sleeping through the night and in his own bed. I am not sure if this will be your answer but stay hopeful and keep trying things. Something will work. Good luck and God bless
•    Anonymous said… This is our 16 year old daughter
•    Anonymous said… This post mirrors my now 18 yr old daughter, eventually had to pull her out of school and do virtual classes. Helped the anxiety tremendously. Last year we were introduced to essential oils and were given a blend to help support her anxiety and she loves it. I have a fb page Essential Oils For All Your Needs, not trying to market it here, but it's got a lot of information on safe oil use and different blends to read about. I wish we knew of these oils years earlier so there wouldn't have been so many years of suffering. Great advice on here-Good luck to your family!
•    Anonymous said… We experienced something similar with our 16 year old son. There is a program called getting your teen out of defence mode that we are finding very helpful. It's put out by a group called asperger experts.
•    Anonymous said… We had the same breakdowns but our little one is 5. The neurologist put her on resperidol and epival when she had her mental break down and it was a god send. We added prozac for her anxiety and she is doing wonderfully and now sleeps through the night.
•    Anonymous said… We use melatonin for sleep. I didn't have high hopes for it originally since a lot of other oils and natural sleep aides didn't work. To my surprise my usual night owl was asleep in under 15 min.
•    Anonymous said… Welcome...to my world. We have a 14 year old daughter. Her high functioning autism comes along with its friends anxiety and depression. The trio are making life so miserable. Getting her to go into a school building is a never ending battle. Academically, she is fine. Well ahead of her grade....she still struggles to go in. Everyday. She hates being there. We even switched from a public school to a private, autism aware, school--thinking that might help. Nope. Sleep has been a thorn in her side from day one. It's been a rough road for her (and I) for at least 6 years. Seems to only be getting worse through the teen years. Hugs back to you mom. I know it's not easy.
•    Anonymous said… What are some of the medications being used. I am thinking it's time for a change and want some ideas.

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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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