Question #1: Can you give us just a basic summary of Aspergers for those of us who are not familiar with the disorder?
Generally, Aspergers is understood to involve problems with social skills and relationships, nonverbal communication difficulties, restricted, repetitive behaviors, narrow areas of interest, and adequate development of language skills and intelligence.
Since 1944 when Hans Asperger first wrote of the symptoms he observed, professionals have included different groupings of the following symptoms in their definitions of the condition:
• compulsive adherence to nonfunctional routines
• delayed motor skills
• lack of delay in speech or language comprehension skills
• motor clumsiness
• narrow interest
• nonverbal communication problems
• normal intellectual development
• odd speech
• preference for solitary activities
• preoccupation with parts of objects or nonfunctional aspects of toys, tools, machines, etc.
• problematic peer relationships
• repetitive routines
• restricted interests
• social impairment
• stereotyped behaviors
The following symptoms were required for a DSM-IV diagnosis of Aspergers:
• impaired social interaction
• lack of delay in cognitive skills, age-appropriate adaptive or self-help skills
• lack of significant delay in language skills
• limited, habitual, stereotyped patterns of behavior, activities or areas of interest
• presence of curiosity in the outside world or the environment
• the first two symptoms must lead to problems in social, occupational, or other types of functioning for the individual
• the symptoms are not related to a diagnosis schizophrenia or another pervasive developmental disorder.
These criteria attempt to describe individuals who:
1. Appear to experience a lack of reciprocity in social interactions. This means an individual who does not understand nonverbal communication (e.g., gestures, facial expressions) and, for example, may continue a conversation even though the individual he is talking to is looking at his watch trying to get away. The individual with Aspergers has difficulty recognizing and understanding others’ use of facial expression and gestures during conversation. Their lack of response to this type of communication creates great difficulty for them in social relationships. Similarly, an individual with Aspergers may not use nonverbal communication and may appear expressionless in most conversations or interactions with others.
2. Have an area of special, sometimes obsessive interest. Many times, individuals with Aspergers develop this interest as a way to overcome fear - however this does not always have to be the case. Weather, especially tornadoes and hurricanes, can be fearful or even terrifying. A youngster with Aspergers may develop a preoccupation with weather to cope with this fear. He might watch the Weather Channel continuously, read the weather report in the paper numerous times across the day, or read about different weather phenomena and be able to share details of past storms when the weather worsens. Trains are often a focus of interest for many kids with autism. Video games and computers also appear to be strong interests as the younger kids mature.
3. Have great ability to attend to detail and recall detailed information about their areas of interest. While individuals with Aspergers can amaze others with the amount of detailed information they have stored on certain topics, they often have difficulty using and applying this information constructively. They can experience difficulty recognizing the “big picture”, or recognizing the forest from the trees. The relevancy of the information they know is often limited.
4. Have unusual speech patterns. While individuals with Aspergers may have begun talking at an appropriate age, they often used a rather pedantic, long-winded and sometimes rather concrete or literal style of speaking. Pedantic describes speech that is overly focused on the details of its topic. It is speech that appears to list details about a topic one after the other. In an individual with Aspergers, this type of speech does not appear to be impacted by the environment (such as by the nonverbal cues of others), and therefore seems less conversational and more like a monologue. Individuals with Aspergers often also understand and use words concretely and literally. An example could be when a teacher discussed possible consequences for misbehavior with a student who has Aspergers. The student heard that if he did not complete his homework or class work at any one time, that he would receive a detention. He became very angry over this perceived injustice. He did not understand that the teacher had meant that when she saw a pattern of incomplete work, she would provide the consequence of a detention. With such a concrete way of understanding others, the individual with Aspergers can easily misinterpret others’ intent and respond in an unexpected and possibly inappropriate way.
5. Lack a theory of mind (the ability to understand what another person may be thinking in a given situation). They have difficulty imagining or understanding how someone else’s thoughts, experiences, knowledge, or desires could influence their behavior. This concept has also been called “mind blindness”.
6. Tend to prefer routine, repetitive activities and to avoid and dislike transitions and change. They have been described as often having a “one track mind”. They can have a plan, and if it fails, will continue with it until it does work.
Question #2: How is Aspergers “related” to Autism?
Aspergers and some other disorders are believed to fall along a spectrum. This spectrum has been called the autism spectrum, and also the pervasive developmental disorder spectrum. Whatever it is called, Autistic Disorder (or autism) would fall at one end of the spectrum, while “average” or “neurotypical” functioning would be found at the other end. Aspergers has been conceptualized as a mild, less problematic form of autism that falls between average functioning and autism on this continuum.
This means that kids with autism experience many of the same symptoms as individuals with Aspergers. However, the symptoms of kids with autism are usually more severe and their functioning is much more impaired. For example, while a youngster with Aspergers may have difficulty using language socially, a youngster with autism may be mute. Both Aspergers and Autistic Disorders may involve social rejection, lack of understanding or interest in other individual’s feelings, difficulties interacting with others, some rigidity (instead of flexibility) in play, difficulty using language socially, poor nonverbal communication skills, odd motor behaviors, and narrow interests or abilities.
Question #3: How is Aspergers “different” from Autism?
Autism is the more severe form of problems with social interaction, restricted behaviors and areas of interest, and impaired language skills. For example, while a youngster with Aspergers may have difficulty interacting with others socially and forming friendships, a youngster with autism may often avoid direct eye contact with any individual, dislike physical touch including the experience of hugs or loving touches, and may not develop verbal skills (a more severe expression of impaired social skills). According to the present diagnostic criteria, individuals with autism usually experience significant delay in the acquisition of language skills (e.g., the youngster did not use single words before the age of 2; communicative phrases were not used until after age 3). Cognitive skills are also often impaired. In contrast, individuals with Aspergers should not have experienced delay or impairment in cognitive or language skills.
The differences between autism and Aspergers can be summarized as:
• “visuospatial development” - which means skill at processing and understanding visual, nonverbal information (in some kids with autism this could be a strength, whereas this was never addressed by Asperger)
• cognitive skill (Asperger wrote about kids with normal intelligence; research has demonstrated that the majority of kids with autism are cognitively impaired)
• differences in motor ability (original descriptions of kids with autism did not suggest any motor difficulties, while early descriptions by Asperger did)
• language ability
Others have suggested that while individuals with autism show little interest in peer interaction, individuals with Aspergers often seek such companionship.
Question #4: What is the difference between Aspergers and High Functioning Autism?
Many individuals identified as having high functioning autism (or HFA) had more pronounced symptoms of autism as kids. As they aged, the development of basic social skills, age appropriate cognitive skills, and verbal ability occurred. Tony Attwood, a psychologist who has much experience and expertise in Aspergers, has written that HFA is a phrase that is most often used in the United States and often applies to individuals who qualified for a diagnosis of autism as kids.
Controversy still exists within the literature about the differences between these diagnoses. Some individuals use the terms interchangeably. At this point, differences between the two labels (HFA and Aspergers) have yet to be effectively clarified.
Question #5: How is Aspergers treated?
Different symptoms of Aspergers can be treated with the goal of reducing the problems they create for the youngster or individual. Treatment can include medication management of problems such as anxiety and depression, conditions that often occur as a result of the difficulties experienced by the individual with Aspergers. Medication has also been used to manage the obsessive (recurring, bothersome thoughts) and compulsive traits (behaviors used to get rid of the bothersome thoughts) that can be exhibited. Historically, these individuals have been incorrectly diagnosed with other types of disorders including schizophrenia, personality disorders, Attention Deficit Hyperactivity Disorder (ADHD), and Obsessive Compulsive Disorder (OCD). Medications, such as anti-psychotics, have been prescribed. The problem with this approach is that although individuals with Aspergers may experience obsessive thinking, repetitive thoughts or interests, or exhibit unusual social behavior, their symptoms are best reflected by the criteria for Aspergers rather than these other diagnoses.
Behaviorally, interventions targeting skill development tend to be the most common and can be affective at any age. Early intervention with young kids often relies on behavioral principles. Kids are taught new behaviors and rewarded based on their ability to engage in that behavior with increasing frequency. Consequences may also be applied to decrease negative behaviors. Interventions for older kids and teens focus more on educating them about their diagnosis, developing new skills, and providing opportunities to practice those skills. Moms and dads, educators, and / or therapists can all play a role in this process. Often however, there needs to be some intervention at school if a youngster is going to successfully learn new behaviors. Moms and dads need to talk to school staff (educators, administrators) to determine what resources are available for their youngster within the school (such as counselors, special programs, teacher assistance, etc.). Therapy also provides a means of learning new skills. Individual therapy helps address emotional difficulties that may arise as a result of the Aspergers. Social skill training can be a part of this work. Group therapy offers a chance to learn new skills in a setting designed to offer the chance to practice and receive feedback on what is being learned.
Question #6: What is the difference between a “disorder” and the normal range of abilities and personality?
It is important to remember that all behaviors fall along a continuum or spectrum. At one end of the spectrum is “normal” behavior, or abilities, traits, and individual characteristics that are considered appropriate (or typical) on the basis of an individual’s culture, age, gender, etc. At the other end of the spectrum are groups of behaviors that, when exhibited regularly by an individual, create problems for that person in terms of his or her functioning socially, emotionally, or occupationally.
Many individuals have certain eccentricities, including unusual hobbies, anxiety or awkwardness in social situations, or clumsiness. This is considered well within the range of normal behavior. However, when these behaviors coincide, form a pattern across time, and negatively impact an individual’s ability to function, then they are viewed as “clinically significant”, and as requiring diagnosis and treatment.
There is a lot of controversy about the diagnosis of Aspergers. Added to the mix is concern that individuals with poor social skills are being “pathologized”. Put another way, the “loners” are now qualifying for a diagnosis. Our society expects individuals to be social. When they are not do we view them as disabled? Simon Baron-Cohen explored this argument and looked at both sides. He suggested that many of the behaviors associated with Aspergers represent a focus on things rather than on individuals. If placed in a different environment, he believed that Aspergers would not be seen as a “disorder”. He also pointed out that kids with Aspergers tend to meet the majority of developmental milestones on time, and emphasized the typical or “normal” aspect of their development. In contrast, he also discussed two reasons for continuing to consider Aspergers a “disability”: (1) so that individuals with this diagnosis could have access to support at school (possibly through special education services) and within the community (some insurance companies will pay for an individual with Aspergers to get treatment in outpatient therapy); and (2) because lack of empathy (or theory of mind) can create significant problems emotionally for individuals with Aspergers.
Question #7: Do females experience Aspergers differently?
Yes, however far fewer females are diagnosed with Aspergers than males. Earlier, the ratio was believed to be one girl to every ten males was diagnosed with Aspergers. Currently however that ratio is believed to be more in the range of one girl to every four males. As professionals become more familiar with the diagnostic criteria, more females appear to be receiving the Aspergers diagnosis.
Generally, it is believed that females experience a much milder form of the difficulties associated with Aspergers. American society emphasizes and pushes females to develop strong social skills at an early age. This may benefit females with Aspergers by helping them learn compensatory skills or address any deficits earlier in life. Alternatively, it has been suggested that females use different coping strategies when dealing with social situations. Females tend to hide in social situations, and remain on the periphery. This allows them to observe the behaviors of others, and once comfortable with the process, to mimic those behaviors (e.g., facial expressions, gestures, tone of voice). Doll play allows younger females to re-experience social situations, replay them, alter them, and learn from them. Females also often have invisible friends - a safe tool to use when practicing social skills. Among females, Aspergers may express itself more through immaturity. Topics of special interest also may not be as intense as the interests exhibited by males. Females’ areas of special interest seem to be different from those of males. Their preoccupations center more on animals and classical literature. The long-term prognosis for females with Aspergers also seems better than for males, largely because of the females’ ability to hide their difficulties from others over time.
Question #8: What other problems may an individual with Aspergers experience?
A number of difficulties can accompany the behaviors that define Aspergers. As individuals with limited social skills and awareness of others, who tend to have areas of unusual or intense interest, a strong need for routine, and unusual mannerisms, individuals with Aspergers often experience emotional difficulties, including depression, anxiety, and anger. Social interaction and negative feedback from others creates stress. Individuals react differently to such stress. Some individuals internalize distress through the experience of feelings of low self-esteem, hopelessness, helplessness and sadness. Some internalize the distress through feelings of anxiety. Others externalize the distress through angry, aggressive, destructive, or rule-breaking behaviors. These reactions can be triggered by teasing, perceptions of being treated unjustly, frustration and confusion in response to certain situations - many triggers can exist and depend solely on the individual. If any of these additional problems (depression, anxiety, or anger) affect the individual’s ability to function and are pervasive, they may require diagnosis and treatment as well.
Other conditions can also occur with Aspergers, but are not part of the criteria for the Aspergers diagnosis. Problems with attention, concentration, and/or impulsive, distracted, or hyperactive behaviors might suggest a possible diagnosis of Attention Deficit Hyperactivity Disorder (ADHD). The occurrence of motor and verbal tics could suggest problems associated with Tourette’s Disorder. For individuals who experience these problems as well as the difficulties associated with Aspergers, a dual diagnosis may be necessary.
Question #9: What are the advantages and disadvantages of having the label Aspergers?
The advantages tend to be personal and emotional. For moms and dads, the diagnosis and label provides them with a sense of relief. Many moms and dads of kids with Aspergers say that they have known that something was “wrong”, but felt that they could not get “the problem” properly identified. When such difficulties are identified and labeled, moms and dads and individuals are better able to understand the nature of the problems and how to remedy them. By labeling the disorder, it is easier to address any problems that are associated with it, and allows moms and dads and individuals the opportunity to maximize the positive aspects of the disorder. Individuals with Aspergers often have a unique ability to focus, and to catalogue detailed information about their areas of interest. In many situations, these talents can be put to very positive, constructive uses. One only needs to look at the celebrities who some suggest may qualify or may have qualified for an Aspergers diagnosis to realize what talents can be associated with what is called a “disorder”.
Other advantages to “labeling” include providing moms and dads and educators with a way to learn about a youngster’s behaviors. By learning about Aspergers individuals can better understand its implications so that parental, teacher, and community expectations of the individual are realistic, reasonable, and do not require that person to meet standards that are outside his/her range of abilities. Additionally for kids, the diagnosis qualifies the youngster for assistance in the schools as defined by IDEA. This means that the schools are required to provide special accommodations for the youngster’s education. The accommodations need to be tailored to the youngster’s condition so that they help create a learning environment that is best suited to the youngster’s abilities.
Disadvantages associated with the label of Aspergers are similar to the disadvantages associated with any label, and generally refer to individual’s tendency to think in stereotypes. Labeling an individual gives others the ability to “pigeonhole” or make assumptions about the individual based on the diagnosis, or their understanding of the diagnosis. This can lead individuals to make decisions and judgments about the individual based on the diagnosis rather than on the needs and characteristics of that person.
It is always important to remember that no person is a diagnosis, and that no diagnosis is an individual. Aspergers is merely one quality of an individual. That person will have many other traits, characteristics, and aspects of his/her personality. Readers are encouraged to learn about the individual first, then to explore the way the Aspergers diagnosis affects his/her functioning.
Question #10: What is meant by “impaired social interaction”?
Essentially, this means that the individual with Aspergers experiences difficulty developing relationships, responding appropriately, and interacting with others with ease. Certain qualities of human interaction are very difficult for individuals with Aspergers. Individuals communicate with each other through verbal (e.g., speech) as well as nonverbal (e.g., eye-to-eye gaze, gestures, body posture) communication. While verbal ability is often a strength for individuals with Aspergers, nonverbal communication is usually an area of difficulty. Individuals with Aspergers have trouble understanding the nonverbal communication of others. They overlook or don’t recognize the meaning behind another person’s gestures or facial expressions. This means that they frequently miss the cues they are given that an individual wants to leave, is getting bored, or wants to say something herself. The individual with Aspergers can also have difficulty using nonverbal communication, for example: hand gestures do not fit with what is being said, or there is an absence of gesturing or a complete lack of nonverbal communication.
Impaired social interaction also means that an individual has difficulty making and keeping friends. As can be imagined, interacting with someone who does not understand or use nonverbal communication can be unsettling and uncomfortable. As a result, many individuals avoid the individual with Aspergers and relationships do not develop. When friendships do occur, they are usually built on a shared area of interest. That interest is typically the focus of the intense interest and preoccupation of the individual with Aspergers. Maintaining such friendships can be difficult because the individual with Aspergers can be rigid and inflexible regarding the area of interest. In other words, their conversation rarely addresses other topics, and they tend to be the center of any conversation about the topic (leaving the other youngster to listen rather than contribute to a discussion). Because the individual with Aspergers is so focused on this interest, s/he often knows a great deal of detailed information about it. This can often be intimidating to other kids who do not feel as much an “expert”.
Lastly, impaired social interaction also encompasses the distressing social situations that many individuals with Aspergers encounter. The term “playground predator” has often been used to describe kids who appear to purposefully, intentionally, and vindictively single out a youngster with Aspergers for teasing and taunting. Bullies often do pick on kids who are “easy targets” or vulnerable. With their difficulties understanding nonverbal cues, and having limited social support, individuals with Aspergers are often the targets of bullies.
Question #11: What is pedantic speech?
Pedantic describes speech that is overly focused on the details of its topic. It is speech that appears to list details about a topic one after the other. In an individual with Aspergers, this type of speech does not appear to be impacted by the environment (such as by the nonverbal cues of others), and therefore seems less conversational and more like a monologue. This includes the individual’s likely idiosyncratic, or unusual use of words, e.g., a “Hoover for the face” being used for razor, or tendency to make up words to communicate their thoughts. The volume of the individual’s speech may be off - either too loud or too quiet for the environment or situation. The individual with Aspergers may also vocalize his or her thoughts rather than keeping those thoughts to themselves.
Question #12: What is “theory of mind” or “mind blindness”?
It has been suggested that kids with Aspergers (and autism) lack a theory of mind (the ability to understand what another person may be thinking in a given situation). They have difficulty imagining or understanding how someone else’s thoughts, experiences, knowledge, or wishes could influence their behavior. This concept has also been called “mind blindness”.
Question #13: What are “stereotyped behaviors”?
Stereotyped behaviors are those that are repetitive and unvarying. They are behaviors that do not have to serve any apparently useful, constructive purpose, but instead have only personal meaning to the individual with Aspergers. They reflect the individual’s adherence to a routine way of behaving.
Question #14: What are “stim behaviors” and why does the individual with Aspergers do them?
Stim behaviors refer to behaviors that tend to appear in response to an anxiety-provoking situation or experience, they are repetitive, and often times appear unusual or inappropriate socially. Kids with Aspergers often become obsessed with the need for sameness or routine. When changes occur in their environment that deviate from that sameness, anxiety is produced and repetitive, ritualistic behaviors restore some of the sense of “sameness” that was lost. These behaviors are the way the individual with Aspergers copes with change, unpredictability, and anxiety. Attempts by educators, moms and dads, or significant others to stop these behaviors may lead the individual with Aspergers to feel panic, anger, and/or extreme anxiety and can results in extreme behaviors (screaming, temper tantrums) that are often less desirable than the stim behavior. In these instances, it is often best to try to help the individual with Aspergers learn an alternative, more socially acceptable behavior to achieve this same goal.
Question #15: How can I find out if my son has Aspergers?
Currently, awareness of Aspergers appears to be increasing. While this is positive, some confusion continues to exist among professionals about diagnosing the condition. For this reason, it will be important to work with someone who either has some pre-existing knowledge of Aspergers, or who is willing to learn more about it. Physicians, psychologists, therapists, and educators are usually among the first individuals to identify Asperger symptoms. Consulting with a trusted person in any of these fields would likely be a good first step. They can then either help you directly, or can refer you to someone else within the community who can.
Accurate diagnosis often involves testing by the use of questionnaires, check lists, clinical interview, psychological tests and possibly medical examination. Different professions emphasize different means of identification. If you believe you or your youngster may qualify for a diagnosis of Aspergers, or another autism spectrum disorder, taking that first step of contacting a trusted professional will be very important.
Question #16: When is it good to look for help for my Aspergers child?
The earlier the better... interventions targeted at young kids can help them learn social skills and ways of interacting with others that will help them avoid the social difficulties (such as teasing, bullying, social rejection and isolation, and social anxiety) that affects older kids, teens, and grown-ups with the disorder. Alternatively, older kids and grown-ups can benefit tremendously from learning about the disorder, and ways to address its negative aspects while maximizing its positive side. The key is to seek help. Without knowledge of the disorder and proper diagnosis, many individuals can continue to experience difficulties that can affect them for a lifetime.
The Aspergers Comprehensive Handbook