Authors: Michael Palmer
AUTHOR'S NOTE
Fourteen years ago, my wife and I sat numbly in the office of a child development specialist and listened to him tell us that our beautiful four-year-old son had Asperger syndrome, a form of autism. He said much, much more, but as you might suspect, the only word we really heard that day was
autism
.
We did not know it at the time, but we were on the edge of what was about to be an explosion in the field of so-called autism spectrum disorders as well as an alphabet soup of related diagnoses such as ADD (attention deficit disorder), ADHD (attention deficit hyperactivity disorder), PDD (pervasive developmental disorder), PDD-NOS (not otherwise specified), NVLD (non-verbal learning disabilities), and others.
Now, after years of groups, therapies too numerous to mention here, specialists, and intense parental involvement, Luke is a witty, creative, sensitive, kind, insightful, and utterly interesting young man who has been a joy to be around and who has a boundless future. There are and always will be situations that are challenging for him, but the same is true for all of us.
Having raised the issue of adult Asperger syndrome in this novel, I want to answer some questions for those who are interested in learning more. To that end I have enlisted the help of the wonderful Dania Jekel, executive director of the Asperger's Association of New England, and the talented, dedicated Nomi Kaim, also from that office.
The brief answers presented here are just the tip of the iceberg of our knowledge, but hopefully they are a door to further discussion.
. Is there really an epidemic increase in Asperger's cases and other forms of autism?
Although Asperger syndrome was first written about in the 1940s, it did not gain widespread recognition until the mid 1990s. Since then, diagnoses of AS have been rapidly on the rise. However, as of 2008, not enough data exists to reliably determine whether the incidence of AS itself is increasing or the diagnosis is being given to people who were formerly left undiagnosed or were misdiagnosed with psychiatric, behavioral, or emotional problems.
. What are the core traits of people with AS?
The unusual neurological profile of the AS individual can afford him or her unique perspective on the world. Many have extreme talents and skills strengthened by intense, focused interests in such diverse areas as mathematics, literature, music, engineering, astronomy, or meteorology. Most people with AS score in the normal-to-high IQ range and are very systematic and attentive to detail. Unfortunately, some of the challenges faced by people with this condition are vital to modern-day society. These areas of challenge include social communication (the appropriate use of language in social situations), social conventions (understanding others' intent), executive functioning (ability to anticipate outcomes and adapt to changing situations), sensory sensitivities, and frequent anxiety and depression. As a result, many people with AS feel alienated from peers and have difficulty connecting with others.
. Why is the condition 'lumped' in with autism?
Because AS shares some of the core traits of autism (although they may be expressed differently), and because the two may occur within the same extended family, AS is generally considered to lie on the 'autism spectrum.'
Both AS and autism involve a neurobiological difference in how sensory information is processed and integrated.
. Why do people with AS differ so much from one another?
People with AS are all very different from one another. Some, like Thea, are very successful in their careers and friendships, and use their special interests and strong memories to their advantage. For others, like Dimitri, getting through each day (or even out of the house) is a significant struggle. AS, like autism, exists along a continuum or spectrum. Moreover, each of the many traits that characterize AS has its own spectrum. So, a person with AS may have more or less social difficulty, more or less sensory sensitivity, more or less rigidity or organizational trouble, and so forth. The manifestations of AS are always layered upon the underlying genetics and personalities of the affected individual.
. What does it mean that AS is a developmental disability?
Every person with AS is developmentally delayed—not intellectually, but on the social-emotional level. This delay can be significant. For example, a twenty-one-year-old may be socially and emotionally more like a fourteen-year-old. In childhood, the delay becomes particularly conspicuous during middle school and high school, when clear social expectations and friendship groups arise among children, and children with AS become more and more likely to be excluded and not fit in. Adults, however, have greater ability to choose their own social groups and lifestyles and are thus freer to find the place where they belong. Adults with AS often continue to grow and develop throughout their lifetime.
. What causes AS?
The etiology of AS is not yet completely understood. Many believe that environmental factors, toxic exposures, and vaccinations are causative, although to date results of scientifically designed studies have not supported these hypotheses. We do know that there is a significant genetic component: AS and AS traits are seen within many immediate and extended family members of AS individuals. Also, studies of identical twins raised together—one with AS and one without—suggest some additional factor or factors as yet unidentified.
. Is AS manifested differently in women?
Many women with AS appear to have greater success than men in blending in socially and generally managing their social environments. The reason for this common dichotomy is unclear. It could be related to biological or cultural differences in the roles of women as compared to men. Their greater social competence may cause some women to 'pass under the radar' and not get diagnosed when their male counterparts do, and this in turn may account for why four times as many men as women are diagnosed with AS.
. People with AS are so verbal, what is their problem with language?
Many people with AS have complex vocabularies and sophisticated speech, but using language to communicate, also called pragmatics, is a different matter. The rules of everyday conversation that come intuitively to most people have to be actively learned by individuals with AS. Difficulties arise in two spheres. First, people with AS generally do not notice—or notice but misinterpret—the nonverbal aspects of what other people are communicating to them, including facial and vocal expression, body language, gestures, volume, pauses, and so forth. Instead, those with AS miss the context and hear only the words that are spoken. The second sphere includes difficulties in areas of expressive communication such as filtering thoughts before they are spoken and socializing for the sake of interpersonal connection rather than for conveying information. Making 'small talk' and talking on the phone are often a challenge to individuals with AS.
. To what extent do sensory issues impact daily functioning of someone with AS?
A percentage of people with AS are either hyper- or hypo-sensitive to such stimuli as touch, sound, taste, and visual cues (like bright light). There is significant variation among individuals for this trait, often called sensory defensiveness. Some with AS are affected only a little, while for others seemingly normal sensory stimuli can throw up significant barriers to living in the world. Sensory defensiveness tends to be most severe in young children and often lessens over time; some individuals are much improved by adulthood. Thus, a child who cuts tags out of his clothing or refuses to eat certain foods may have a much easier time as he grows older.
. Can AS be cured?
There is no cure for Asperger syndrome. However, over time, the profile of a person with AS may change. Like Thea, the individual often acquires social skills that before were elusive. With time and practice, other troubling traits can be compensated for as well. People with AS can use their many strengths to their advantage as they seek out, and often find, the most constructive environment to match their strengths and interests, and also one where their vulnerabilities are considered acceptable.
. Is everyone with Asperger's a genius with data or information?
No. Most, but not all, individuals with AS do have some area of exceptional talent or ability, but that area is not always information. People with AS can excel in ideas, in creative, artistic, or technological abilities, or even in intuitive abilities. Some, like Dimitri, have multiple areas of talent (Dimitri excels in information, technology, visual/spatial ability, and intuitive ability). The IQs of individuals with AS can range from 70 to genius.
. Are all people with AS avid readers with outstanding rote or verbatim memories for what they read?
No. Some read everything they can get their hands on; others do not. Verbal memory is generally strong in the Asperger's population, but only a minority have the ability to recall verbatim what they have read.
. Do all people with AS have superior visualization powers or photographic memories?
No. A percentage of people with AS possess the ability to recall visual scenes in great detail, often after seeing them only once, and a considerable time after seeing them. Moreover, some recall specific episodes from their lives in early childhood or even infancy. The Asperger's tendency to notice and focus on details no doubt contributes to this ability. On the other hand, it is common for AS individuals—even those with superior visualization powers—to have difficulty remembering faces.
. Do people with Asperger's have feelings or not? How do they differ from those of people without AS?
People with AS do absolutely have feelings, although they may have difficulty identifying and discussing them. In fact, many feelings, such as fear, anger, and joy, seem to be experienced more intensely by those with AS than by average people. In addition, some individuals with AS report that they can incorporate others' feelings, so that if someone else is upset, they themselves will quickly become upset as well. This intriguing empathy appears to happen more with AS than in the general population. People with AS may not show their feelings in the same way, or to the same extent, as others. There may be less outward manifestation of feelings, or facial expression might not match what the individual is feeling inside.
Like many traits among individuals with AS, the capacity to experience empathy lies on a continuum; some have it more than others. There is also variation in the way empathy is felt and expressed. Some people come to empathy through an intellectual process, using logic and reasoning to arrive at the feeling. For unknown reasons, it is particularly common for people with AS to feel a deep concern for global humanity. Thea's comfort in her choice to work for Doctors Without Borders is an example of this trait.
. Why does Thea sometimes insult people or say the wrong thing, but so often says the right thing and act very intelligently?
Like many people with AS, Thea has certain interpersonal vulnerabilities that rise to the surface when things get most stressful. She has difficulty with theory of mind—anticipating what other people are thinking and feeling and how they will react to her. She is quite literal and misinterprets language quite a bit. She sometimes doesn't understand unwritten social conventions and expectations, such as when she declines to see her father alone because he'd 'still be in a coma.' She also has gaps in her cognitive filter, sometimes saying things that should have been kept in check.
All of these things are harder for Thea to manage when she is stressed, such as when she is around the twins or certain hospital personnel. On the other hand, when Thea is calm and comfortable, such as when she is with Dan, her weaknesses diminish significantly and her intellect, wit, and encyclopedic knowledge serve to her advantage.
. Is Thea's and Dan's relationship typical for AS?
The relationship is not particularly typical. Except in the stylized, telescoped world of the novel, it is quite rare for individuals with AS to fall in love so quickly and easily. However, love, dating, long-term relationships, and marriage do certainly play a role in the lives of many with AS. While dating presents challenges, and some may decide that intimate relationships are too much for them, other individuals with AS simply take on the relationship challenge later in life (in their thirties, or even later). Sexual orientation is as varied in people with AS as in the general population, although there may be a higher incidence of asexuality, homosexuality, and sexual role confusion among those with AS. The overall success of an Asperger's partnership depends in part on the choice of partner. The most compatible partnerships are often between two people with AS or an individual with AS and one with AS traits.
-M.S.P.
MICHAEL PALMER is the author of thirteen novels of medical suspense, all international bestsellers. In addition to writing, Palmer is an associate director of the Massachusetts Medical Society Physician Health Services, devoted to helping physicians troubled by mental or physical illness, behavioral issues, and chemical dependency. He lives in eastern Massachusetts.
Visit www.michaelpalmerbooks.com .
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