Treatments and Therapies for Asperger's Syndrome
Treatments and Therapies for Asperger's Syndrome
Learning to Read Emotions
Hundreds of Emotions to Memorize
Dealing with Social Language
Imitating Neurotypical Behavior
Memorizing Social Rules
Therapy or Fraud?
Not Everything Needs Changing
Asperger's has been called “wrong planet syndrome” because people with AS feel like aliens living in a strange world. There is no cure for being born on the wrong planet. There is no AS home planet to which they can return. They must learn to make sense of and fit into this neurotypical world. People with AS have the intellectual and logical skills to adapt to foreign ways of thinking, especially if other people make the effort to understand their theory of mind confusions and help them learn to function in this alien place. Many treatments and therapies have been developed to do just that—teach AS brains what neurotypical brains understand intuitively. The kind of therapy depends on the age of the person with AS and what kinds of problems he or she has in relating to others. Since many people with AS are not diagnosed until they are teenagers or adults, treatments and support are tailored to individual needs.
Cognitive behavioral therapy is one successful method of helping people with AS to develop a theory of mind by using their cognitive, or thinking, skills. Clinicians use cognitive behavioral therapy to help clients become aware of the emotions of
others and their own emotions. The goals are to learn to recognize those emotions, to figure out how to express and control one's own emotions, and to use thinking skills to learn to handle emotions in real life.
One by one, the therapist and person with AS explore different emotions. First they explore a positive emotion, such as happiness. They may make an emotional scrapbook that has pictures, drawings, and photographs that illustrate happiness. Since people with AS have trouble understanding what makes other people happy if it does not make them happy, the scrapbook is about something that gives the AS person pleasure. If the individual is a very young child, the scrapbook may have pictures of smiling or laughing people. It may have pictures of people doing happy things, such as opening presents or riding a merry-go-round or playing a game. For older people the scrapbook will include pictures of the things that person enjoys most. For example, if a person with AS has a special interest in reptiles, the scrapbook can include many pictures of different reptiles and of scientists studying reptiles.
This scrapbook exercise helps people with AS to label the emotion of happiness correctly, but it can do much more. One person's scrapbook can be compared with the scrapbooks of other AS people. Everyone can compare scrapbooks and notice that different things make different people happy. Then everyone can talk about putting oneself in someone else's shoes. They can intellectually understand that people are made happy by different experiences. Eventually people with AS can learn to cheer up someone else or relate to another person's interests by recognizing what makes other people happy.
The scrapbooks can also be used to learn to recognize and label emotional cues. People can make a list of the thoughts, body sensations, and facial expressions that go along with being happy. After they have learned to recognize their own emotion, they can learn to recognize the same emotion in others. They can study facial expressions in pictures and learn to label happiness in other people. Experts believe that this education is actually training the amygdala in the brain to send chemical signals to the frontal lobes about a person's correct emotional state. Once a person can read his or her own emotional state correctly, it becomes possible to develop a theory of mind about others' emotions, too.
Scrapbooks are made about negative emotions, too, such as anger, fear, frustration, and sadness. People learn about the science of fear and anger, for example. They learn how these emotions increase heart rate, cause sweating, make muscles tense up, and make it harder to think clearly. When they can recognize and name the emotions in themselves, they can practice reading these emotions in others. One activity that helps is called “guess the message.”25 Perhaps the scrapbook includes photographs of the person's family members showing different emotions on their faces. The person looks at the faces and tries to read the proper emotion by intellectually noticing the signals explained by the therapist—wrinkled foreheads, big grins, or glaring eyes. With practice, this exercise becomes easier, and so does understanding facial expressions.
Of course, humans display a wide range of emotions, often with very subtle changes in expression, tone of voice, and body language. There is a difference, for example, between rage and mild irritation, as well as a large range of feelings between the two extremes. Over time and with maturity, people with AS can become adept at understanding all the emotions that neurotypical people intuitively display and feel. They are learning the mind reading that comes naturally to neurotypical people.
Simon Baron-Cohen, a clinical psychologist at Oxford University in England, led a scientific team that identified 412 human emotions and then developed a computer program named Mind Reading: The Interactive Guide to Emotions. It is a tool for people with autism spectrum disorders that lets them watch short stories of six different actors responding to 412 situations with appropriate emotions. One of the actors in the program is Daniel Radcliffe, the actor who plays Harry Potter in films. One of the emotions he demonstrates is the kind of disgust a person might feel when given a raw squid to eat. The whole interactive program teaches theory of mind skills with videos, definitions, exercises, and quizzes that are fun and can be used alone or with a teacher. Users can choose one actor and change the expression of emotions to watch the way his or her face changes from happy to sad or from friendly to angry. In a 2006 study, Baron-Cohen and his colleague Ofer Golan tested the benefits of the Mind Reading program with adults with AS. They concluded, “Using Mind Reading for a relatively short period of time [ten weeks] allows users to learn to recognize a variety of complex emotions and mental states.”26
Language problems are also directly related to theory of mind skills, because people use words to express emotions in ways that are often puzzling to literal-minded people with AS. Carol Gray, an educator and expert in autism spectrum disorders, has created treatment techniques that teach social information and appropriate behaviors. Her methods teach in a way that makes sense to AS people who have trouble understanding what other people are thinking when they use words and phrases that imply larger or different meanings. Gray's Social Stories™ are a way to explain the thoughts, feelings, and behaviors of neurotypical people. Using the Social Stories™ kit, short stories are written by a therapist, teacher, or parent with the help of the individual with AS, following the pattern that Gray developed.
Gray says that the goal of the stories is “to seek to understand the student's perspective, to ensure a student has the social information he/she needs, and to present information so it is accessible and easily understood. As a result, every social story has a reassuring, accepting quality—positively and matter of factly describing a specific event.”27 Each Social Story™ is written to help an AS individual deal with a social situation that is a problem for him or her. For example, a person with AS may not understand that it is considered impolite to interrupt when two other people are talking. A Social Story™ could be written that explains and defines what interrupting means. It might then tell what the people could be thinking when they are interrupted. The story could end with what “I” do when I want to talk but do not want to interrupt.
Another teaching tool developed by Gray is called Comic Strip Conversations. These are short comic strips, peopled by two or more stick figures, that illustrate a social situation. Balloons connected to each figure's mouth show what the people are saying. Wavy, cloudlike balloons show what a person could be thinking. This tool also teaches about specific social situations in which a person with AS might feel confused. For instance, a person with AS may not recognize when someone is offering friendship. Instead of saying “I want to be your friend” (which is literal and specific), the other person might say “I bet I can beat you at chess.” Neurotypical people would, assuming the tone is friendly, interpret the statement as an invitation to a chess match. A person with AS, however, might think he or she is being insulted. He or she might think the speaker is making a statement of fact that requires no response. A trained teacher or clinician could put this situation into a Comic Strip Conversation that explained the friendliness that is implied. Different speech and thinking balloons would show what the speaker might have meant. Thinking and speech balloons for the other stick figure might describe a thought of, “That is friendly and sounds fun,” and the response of, “Okay, I'll play a game with you.” Gray's special instructions explain exactly how to make up Comic Strip Conversations to help develop a theory of mind in any situation and for any age person.
For teens and adults, Gray has created a tool called Thinking Stories. These stories help people to understand slang, idioms, figures of speech, and sayings that are often used in social situations. Gray says these stories “describe unstated meanings.” She uses the example of “I'll catch you later.”28 It means, of course, seeing someone later or getting together with someone. People with AS, however, may take the statement literally and think the speaker is going to grab them or trap them at a later time. Other people with AS may know that the statement does not make literal sense, but they may be very confused about what it does mean. Examples of this kind of social speech are: “Has the cat got your tongue?” “You're pulling my leg,” “Chill out,” and “I've changed my mind.” Teens and adults with AS can make lists of such language use and memorize their meanings. Friends, teachers, and families have to be ready to explain the real meaning and be tolerant of misunderstandings.
Since AS difficulties cannot be cured, often the treatment strategy is one of teaching other people to tolerate differences and helping people with AS to adapt and cope rather than to get over the problems. One of the ways that AS people learn to cope is with “rescue questions.” These are the signals that tell other people that their social conversation is confusing. Attwood says that people with AS can be taught to say things like “I'm confused, can you please explain what you mean?” or “Are we understanding each other?”29
Another way to learn to participate acceptably in social situations is through drama classes. Teens with AS can enjoy drama classes in high school or college. They have a script to follow and a director to tell them what gestures to make and how to display emotions. They are practicing what to say and how to say it in typical situations. They can learn not to interrupt, how to chat, how to take turns in speaking with someone else, and how to give compliments or say friendly things. Most likely the script will avoid talking on and on about a special interest or being brutally honest about another person's faults. People with AS have a hard time learning the “little white lies” that neurotypical people use all the time. They do not say “I like
your new hairdo” if they think it is ugly. They do not know how to pretend interest in a topic. They do not know how to limit their talk about a special interest. Drama classes can teach these skills quite effectively. People are role-playing to learn social skills, and very often these skills can be imitated in real life.
From his practical experience with AS, teenager Luke Jackson suggests that other teens with AS memorize and carefully follow some basic advice he has learned for being socially acceptable. Because distinguishing between different social situations is so hard, people with AS do best when they just stick with certain rules all the time. Luke advises:
- Don't “invade” people's space—that means get too close to them.
- Don't stare at someone for whatever reason.
- Don't make comments about people's bodies, good or bad.
- Don't tell dirty, sexist or racist jokes or make sexual innuendos.
- Don't hug or touch people unless they are part of your family or they have agreed to be your boyfriend or girlfriend and you have both agreed to do it.
Luke Jackson, Freaks, Geeks, & Asperger Syndrome. London and Philadelphia: Jessica Kingsley, 2002, pp. 104–5.
Liane Holliday Willey, a woman with AS, recommends classes in drama, psychology, sociology, and speech for people with the disorder. She explains, “Somehow, I was able to dissect the nuances of human behavior far more effectively when I was a student studying it as a science than when I was an individual trying to figure it all out through experience and intuition.”30
Classes, logic, and imitation cannot solve all of the social difficulties involved in living with AS. One of the major problems—that of sensory overload and oversensitivity to stimulation—demands a different approach. The person may have trouble with certain sounds, visual stimulation, smells, touches, or tastes that is so extreme that the sensitivity interferes with everyday life. Little tricks can make a big difference. Earplugs and tinted glasses can help when sounds and sights are unbearable. Special tinted glasses developed by researcher Helen Irlen act as filters for many people with AS who wear them. Other people grow long hair that they can use as a subtle screen or curtain to protect them from strong lights. But often
the tolerance and understanding of other people is necessary, too. In the classroom, for example, a student with AS may need to be assigned a desk away from bright sunlight. Teachers and friends may have to avoid hugging or suddenly and without warning touching a person with AS. They can also learn to accept that the student with AS cannot look them in the eye when they are talking.
Little children who cannot tolerate the textures of foods may be taught to gradually adjust by first licking the food and then holding it in the mouth without chewing. Parents can allow the child or teen with AS to choose his or her own clothing so that the texture is comfortable. They can cut out the tags if the tickling of the tag is unbearable. If certain places such as particular stores or theaters are too stimulating, the person with AS can be allowed to avoid those places or to leave any situation and find a quiet place when the stimulation is too much.
Understanding and tolerance are a form of therapy and treatment, too. They help people with AS feel comfortable, accepted, and capable of coping. Nita Jackson, a British woman with AS, describes the therapeutic behavior of one of her favorite teachers that helped her succeed in school and maintain her self-esteem:
Mr. Osbourne was always bubbly and ready to make a light-hearted joke out of anything. He rarely got angry or raised his voice like most of my other teachers did. He let me hide in the music department's store cupboard at break time, without even blinking an eye, it was as though he understood and accepted why I needed to go to ridiculous measures to separate myself from society. I respected him for not probing for answers like everyone else did. Occasionally he would tap on the door, say “boo!” and offer me a biscuit [cookie] (which I never declined). On the last day of term, I bought him a tin of biscuits in return for the amount of biscuity yumminess he had allowed me.31
The Kennedy Krieger Institute in Baltimore, Maryland, estimates that there are more than three hundred treatments for autism spectrum disorders that have never been proved worthwhile. These so-called alternative treatments are usually tried by desperate parents who want to see their children cured of the disorder. One of the most popular treatments is chelation therapy. It is based on the idea that tiny amounts of metals from vaccines or foods have built up in and poisoned the body. Chelation therapy is a way of chemically removing these metals, using either pills or medicines given with a needle inserted in the arm. This treatment has never been scientifically tested, and the side effects of one of the drugs, DMSA, can be unpleasant or even dangerous. People have had rashes and vomiting. Animal studies have shown damage to the brain caused by DMSA. Another drug used in chelation therapy apparently killed one child in 2005.
Most scientists call chelation therapy for autism “voodoo medicine,” but other researchers have asked for permission to do a scientific experiment with autistic children. They say many families have tried it, and its efficacy should be tested. In 2008 the National Institute of Mental Health considered funding the study. Some scientists said it would be unethical to subject children to dangerous chelation studies, so the funding is on hold until the safety concerns can be resolved.
Treatment, toleration, and teaching are not the only ways to help people with AS. Perhaps the most important way that neurotypical people can intervene in the lives of people with AS is by respecting their differences and recognizing a real value in the Asperger way of thinking. Honesty, intelligence, logic, the ability to focus intensely on a topic, a unique way of experiencing the world—these are just a few of the talents that people with AS may possess. Attwood believes, for example, that special interests may have to be controlled if they interfere with getting along in society, but he does not believe they should be discouraged. Fascination with mathematics or computers, for instance, may lead to new inventions and creative developments in the future. He says that “it is important to consider not only the benefits to the person with Asperger's syndrome, but also the benefits to society.”32 He adds, “We need people with Asperger's syndrome to bring new perspective on the problems of tomorrow.”33 The best and most complete therapy for people with AS may be appreciation of their strengths, as well as helping them overcome their weaknesses.