by Barbara J. Nichols, Ph.D.
You, no doubt, have known people with Asperger’s disorder (AS) but you may not have known that there was an official name for what you were observing. AS is affectionately referred to as the “geek syndrome” because people with AS are often technologically or scientifically oriented. They tend to store a great deal of information on a wide variety of topics and they love detail. They are, therefore, the people you might go to when you have a technological problem or if you need information.
With the publication of the Diagnostic and Statistical Manual of Mental Disorders, 5th edition (DSM-5) in 2013, Asperger’s disorder was subsumed under the label “autism spectrum disorder” (ASD) and will no longer be considered a separate disorder. The writers involved in the development of the new DSM-5 believed that there was not sufficient research data separating the two diagnoses of autism and Asperger’s, and found that the two disorders share enough essential characteristics to constitute one diagnosis for the two groups. However, there are some qualitative differences and in this article I discuss what used to be referred to as Asperger’s disorder since many people with traits consistent with the old Asperger’s diagnosis are better able to identify with that specific grouping of characteristics.
The differences between Asperger’s and autism are subtle. Intelligence, use of language, and the desire for social contact are among the traits that separate them. For instance, people with classic autism seek social isolation and most often demonstrated that tendency early in childhood. People with AS are more likely to seek out social contact. Autistic individuals develop language skills later than typically-developing children and in more severe cases, may not learn to speak at all. People with ASP, on the other hand, often demonstrate precocious language skills. People with classic autism were, in recent history, thought to have an IQ in the mentally retarded range. We now know that many, if not most, autistic individuals, Temple Grandin being among the most famous, have an average to superior IQ. In the past, they were incorrectly thought to possess intellectual deficits because of their poor communication skills and because they have, in some cases, functional deficits. A person with severe autism may never learn to tie his own shoes or dress himself but can have extreme talent in other areas, particularly in music, math and science. The AS diagnosis did not include individuals with mental retardation.
Asperger’s disorder (and autism) can be thought of as a neurosocial condition because the brain and nervous system are wired in such a way as to affect social behavior, particularly in the area of social communication. People with autism spectrum disorder have difficulty knowing how to fit in with the general population. The syndrome also affects perception, sensation, cognition, physical coordination, organization, motivation, attention, and mood. Attention deficit disorder is considered by some to be a close relative of autism spectrum disorder because, in both disorders, areas of the brain responsible for planning, organization, social connectedness, and impulse control are similarly affected.
Although Hans Asperger, in 1944, described a group of people he called “autistics”, AS was not entered into the psychiatric DSM until 1994. Since that recent inclusion, there has been a flurry of scientific research into ASP. Theories about causes and symptoms are rapidly changing as new brain imaging and neurological research findings come available. At present, to receive a diagnosis of autism spectrum disorder, the individual must meet two criteria: firstly they must have significant impairment in social interaction and social communication; and secondly, they engage in restrictive and repetitive behaviors or have restricted and persistent interests.
Most people with ASD have a special topic of interest or a few narrow topics that trump almost every other interest. Common topics include trains, gadgets, electronics, history, music, and languages. Out of a burning desire to talk about her interest, she will bring every conversation around to it, no matter how the conversation began. Reciprocal, or back-and-forth, conversation is not in the skill set of a person with ASD. They will talk “at you” incessantly about a topic long after you have gone into a blank stare and they will be unlikely to notice that you are bored. It is this conversational style that makes them appear socially inept and it is why they are so often rejected socially.
Because of social awkwardness, people with ASD are usually on the outskirts of any social structure in which they find themselves, be it at work, school, church, or the community. You probably won’t find them standing around at the water cooler at work gossiping or engaging in small talk, for instance. Parties and gatherings are rarely attended by them, except when it is with their own family. They tend not to belong to groups, clubs, or organizations, and usually do not have a social network. Living and working alone is often much preferred, and because the syndrome can be accompanied by a superior intelligence, they can excel when left to create and design independently without the distractions of the social environment.
Having ASD has its advantages. The syndrome endows the individual with a larger than average brain size that may give them savant-like abilities. Temple Grandin was able to understand the way animals think and feel and was instrumental in changing the cattle industry for the benefit of the animals and the businesses that handle them. In another example, the movie “Shine”, starring Geoffrey Rush, about the life of David Helfgott, showcased a piano virtuosity that was evident in early childhood. Like these famous people, individuals with ASD have an ability to focus intently on one topic and have a tenacity that is matchless. Think of the scientists you have heard about, like Albert Einstein or Richard Fineman, for instance, who spent all of their waking hours for years on end solving problems in science and math while shrinking from social interaction. They are excellent examples of highly functioning individuals on the spectrum.
People with ASD may have an extraordinary memory for detail, can calculate large numbers with lightening speed, learn languages easily, and are talented scientists, musicians, technicians, and historians. If there is something you want to know, ask a person with ASD. You will have a detailed and accurate response that will surprise you by its volume and breadth.
People with AS love and, in fact, crave information almost as you might crave chocolate. They are in good company. Amadeus Mozart, Albert Einstein, Alexander Graham Bell, Thomas Edison, and Sir Issac Newton, just to name a few, are posthumously thought to have had AS. More recently, Dan Aykroyd and Darrel Hannah announced that they had been diagnosed with AS and many people believe that Bill Gates has Asperger’s-like traits, although this has not been officially confirmed publicly.
Because of an intuitive understanding of how mechanical or electronic machinery function, a person with AS can usually fix just about any gadget. Machines, technological devises and programs, math and science are logical and predictable, therefore, the person with AS tends to prefer working with machines over working with humans. Unlike machines, people lie, deceive, manipulate, or connive. These social tricks are foreign and confusing to the person with ASP.
Polite niceties seem phony and dishonest to the person with AS. Social convention eludes them. The term “brutal honesty” has often been applied to their list of characteristics, and although their tactlessness may appear to be rude to most people, it is not meant to offend. Rather, it is meant to harmlessly and straightforwardly inform. They might point out to you, for instance, that your breath is bad when your relationship does not warrant such intimate or sensitive discussions.
You might observe a tense or pained facial expression when they are speaking to people. They might have stiff lips and a sideways glance because they are so uncomfortable with social interaction. The effort to conform, when they don’t understand social rules and conventions, makes them feel confused and anxious. They might avoid making eye-to-eye contact out of shyness and an aversion to sensory input, or they may stare at you too intensely. They don’t fully understand social rules and can’t read social cues. Non-verbal forms of communication such as voice tone, body language, and facial expressions are generally missed altogether or, at best, misperceived. This causes them to misunderstand others and leads to relationship dysfunction.
Don’t be surprised if you ask a person with ASD how he or she is feeling and receive an explanation of what he is studying or working on instead. They are usually unaware of their emotions and may be accused of not having them at all. Significant others complain of feeling emotionally neglected by them. They do have deeply felt emotions, but may not know that they have them, let alone know how to express their feelings in words. Because the expected smile in the eyes, the voice, and on the mouth are missing when you greet them, you might make the mistake of thinking that they don’t like you or are cold and indifferent. Don’t be misled. They may have very warm feelings for you but can’t show it in the way that is recognizable to you.
You may have noticed a strange posture or gait when you met a person with AS. They might walk stiffly with arms held tensely at their sides. Their shoulders may be carried high, or the opposite may be true. Because of low muscle tone and hyper-flexibility they might slump in the chair or slouch when they walk. They generally have poor motor coordination and as a result, they almost always report that they were the last student to be chosen for a place on the team in school sports. They can excel, however, at solitary sports such as swimming, bicycling, jogging, or billiards. Their hand writing is usually pretty unreadable so they often adapt by printing or word processing.
Repetitive behaviors such as rapid hand flapping, rocking in the chair, finger tapping, or knee bouncing soothes their raw nerves but these behaviors are off-putting to others. Many people with AS have obsessive compulsive behaviors as well. They may have to follow a rigid routine when dressing or grooming, or have to check and recheck locks on doors or knobs on the stove. Pornography, gambling, and drugs or alcohol can become severe addictions among people in the AS population.
These technologically oriented people are concrete thinkers. Facts and information make sense to them. Analogies or speech idioms are confusing to them since such forms of communication leave room for interpretation of concepts. It is as if they were from an alien culture and were never taught the meaning of subtle gestures and nuances of conversation. As an example, if you were from Japan and were invited to an American home for dinner, you would take your shoes off at the door, and while eating, you would keep both hands and arms on the table. Your American hosts would think you rude if they did not know those Japanese customs. People with AS usually feel out of step with their peers in much the same way as that Japanese guest might. In fact, people with AS report that they feel much more accepted when around people of another culture because they are not expected to understand cultural traditions.
The meaning of a joke may escape a person on the spectrum. They might understand the joke but can’t figure out why it is thought to be funny. It just seems absurd to them because of their logical orientation. Tell them a joke about a priest and a rabbi who go to heaven’s gate together, for example. The person with AS may tell you that it is silly to think that those two people would go anywhere together. Despite the concreteness in their thinking, or perhaps because of it, a person on the spectrum can be very funny and entertaining. They see the absurdity of the social culture from the point of view of an outsider and can make us laugh at ourselves. Again, Dan Aykroyd is a good example and some people believe that Robin Williams has AS.
People on the spectrum, in addition to the list of the essential diagnostic characteristics of social interaction deficits and restricted/repetitive behaviors, suffer with a long list of symptoms such as anxiety, mood swings, sleep problems, food sensitivities, digestive problems and sensory issues. These issues all make melding into the social environment difficult. Although it is not an essential characteristic for the diagnosis, almost all people on the spectrum, ADHD included, report experiencing sensory sensitivity anomalies. They are repelled by specific textures of clothing or food. Bright lights and the flickering of florescent lighting bother them. Sounds that may be pleasant to others can be torturous to the person on the spectrum. One child spoke of his mother’s voice as “hurting my brain”. They deal with sensory overload in big box stores, crowds, or shopping malls where lights, sounds, and constant disorganized activity are experienced as chaos. Such strong sensory input is overwhelming to the sensitive brain.
Many, if not most, people with AS had been bullied in school and in the work place and suffer from trauma-related disorders as a result. Most often they have been rejected, ostracized, or worse, openly criticized in social settings. It hurts them terribly and causes them to feel like outcasts – the single most disturbing and painful of human experiences. Loneliness and isolation are their constant companions.
ASD is a complicated combination of characteristics, extraordinary talents, and traits. It has a wide variety of symptoms that differ from one individual to the next. It can range in severity from very mild and hardly noticeable, as in the case of the eccentric college professor, to the very deeply affected individual who will never have a job or a family of his own. There are about 4 males to every one female diagnosed with ASD and there is approximately one in every 96 individuals who are diagnosed with autism spectrum disorder. The numbers of individuals diagnosed with ASD are increasing with time probably because we are diagnosing it earlier in development, diagnosing milder forms, and are generally better at recognizing it. But, conversely, it may be increasing in prevalence because of exposure to environmental pollutants.
The cause of the syndrome is not fully understood but it appears to be the result of neurological changes in the brain of the developing fetus. The possible causes of ASD being investigated include exposure to neurotoxins, an over exposure to testosterone during gestation, nutrition, food sensitivities, genetics and epigenetics, exposure to mercury, and a lack of oxytocin (the bonding hormone) in infancy.
Misdiagnoses often occur in the milder forms of ASD. The disorders that are mistakenly given to ASD individuals include fetal alcohol syndrome, nonverbal learning disorder, tourettes, attention deficit/hyperactivity disorder, schizophrenia, obsessive-compulsive disorder, and/or traumatic brain injury. A thorough assessment by a trained psychologist or neuropsychologist who specializes in the treatment and diagnosis of autism spectrum disorder is needed for a definitive diagnosis.
The syndrome cannot be “cured” entirely but treatment for the disturbing symptoms of anxiety, depression, mood swings, trauma, sleep disturbances, OCD-like symptoms, digestive problems and phobias is available and effective. Many people with Asperger’s never need psychological or psychiatric treatment. They are happy, satisfied, and self assured. However, for those who are not happy, seeking treatment is often frustrating. Not many mental health practitioners are familiar enough with the syndrome to treat it effectively. A mental health professional treating ASD must be equipped with a comprehensive knowledge of the disorder and appreciate it as a complex nervous system and systemic biological condition, as well as a psychiatric condition.
ASD treatment specialists find that social skills training, anger management skills training, trauma recovery methodologies, mindfulness techniques, and cognitive/behavioral therapies are all helpful. Dietary and nutritional consultation is extremely important as well. Self-esteem and assertiveness building, and stress management techniques are all useful for bringing about a feeling of well-being and confidence. Medicine for the symptoms that trouble people on the spectrum can be effective. However, above all else, the person on the spectrum must begin the journey of accepting himself completely and embracing the syndrome that brings them valuable talents and traits. Self-acceptance brings with it a comfort in social situations and it chases away depression and anxiety.
Although there is no known cure for ASD the brain is a very “plastic” and flexible organ. It can adapt and make new pathways as the person with ASD learns new behaviors and emotional responses. It is important to point out here that many people with ASD will tell you that, if they were magically given the opportunity to be “normal” and no longer be on the spectrum, they would choose to stay as they are with their amazing characteristics. Once they learn that they are not inferior, but rather exquisitely different, they begin to relax and enjoy their life.
Many people with ASD think of themselves, and the ASD population as a whole, as paradigm shifters, inventors, and innovators without whom the world would be much worse off. Where would we be now if it were not for Albert Einstein or Mozart? They were socially inept geniuses that changed the world with their brilliance.
The culture, at large, has yet to fully understand and accept the population of individuals on the autism spectrum. Therefore, finding a niche where they are appreciated and respected, and where their talents and abilities are valued, is vital to their success in life. Those who are lucky enough to find their unique place in society excel and contribute significantly.
It is the mission of the Adults Asperger’s Association to open the door, through public education, to acceptance. It is our hope that people with ASD will, in the near future, be supported and encouraged in their creative and “out of the box” way of thinking and problem solving.
SELF-SCREENING TESTS FOR ASPERGERS
Would you like to know if you fit into the autism spectrum? Click on the follow two links to learn more. They are links to questionnaires developed by Simon Baron-Cohen, a leading researcher in the field of autism spectrum disorder. Follow the directions for completing the easy and short questionnaires and you will receive your results immediately. These screening questionnaires are a good starting point. They will give you useful information about yourself but for a definitive diagnosis you may want to seek out a trained professional.
— Barbara J Nichols, Ph.D., clinical psychologist