Understanding the Asperger Syndrome

Individuals with Asperger Syndrome range from people who may be considered a little eccentric to people who have serious difficulties socially, educationally, and professionally because they lack basic understanding of human interactions. People in the latter group often have to learn by rote things that other people consider common sense, such as how to read facial expressions, tones of voice (like sarcasm), and verbal expressions (such as “raining cats and dogs”).

Many people with Asperger’s have brilliant intellects yet are naïve and easily taken advantage of by others because they interpret situations at face value and miss social cues. Generally, “Aspies” lack common emotional responses and must learn appropriate social skills to function within society, but they’re typically considered high functioning and may never be diagnosed at all. No obvious language delay comes with Asperger Syndrome; however, language tends to develop in a unique manner. Professionals dispute whether Asperger’s should even be considered a disorder. People affected don’t show the same delays in cognitive development or curiosity about their environment that people with classic autism do in childhood.

One well-known person with Asperger Syndrome is Liane Holliday Willey — a doctor of education, a writer, and a researcher — who realized she had the syndrome only after her daughter received a diagnosis. In her book, Pretending to be Normal: Living with Asperger’s Syndrome (Jessica Kingsley Publishers), Willey explains how an undiagnosed individual often feels different from others but doesn’t know why. The person doesn’t seek a cure, only acceptance. “No matter what the hardships,” Willey writes, “I do not wish for a cure to Asperger Syndrome. What I wish for is a cure for the common ill that pervades too many lives; the ill that makes people compare themselves to a normal that is measured in terms of perfect and absolute standards, most of which are impossible for anyone to reach.”
You must understand that people with Asperger’s don’t lack feelings; their brains just function in such a way that they have trouble accessing and expressing feelings to others in a traditional manner.

Understanding PDD and PDD-NOS

Pervasive Developmental Disorder (PDD) is the category containing autism, Asperger Syndrome, Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS), Childhood Disintegrative Disorder, and Rett Syndrome. PDD-NOS is a catchall diagnosis for people having most but not all the characteristics of autism. People with these disorders are often described as “autistic-like” or developmentally delayed with autism symptoms; recently, experts have put them on the autism spectrum.
Although classified under the Pervasive Developmental Disorders, Rett Syndrome has identifiable physical differences such as reduced muscle tone (causing the child to seem “floppy”) and stereotyped hand movements such as wringing or waving. Additionally, Rett Syndrome produces an identifiable chromosomal difference.
People with PDD-NOS need some special services but don’t fit the behavioral criteria for any of the other categories of autism. Maybe the person lacks meaningful speech or has stereotypical movements such as hand flapping or rocking, but he or she doesn’t have enough of the symptoms to fill the symptom bucket and be considered autistic. This lack of a label may make it tougher to get services, because the autism label — although considered stigmatizing by some people — does generally get you educational services in most places.
Because autism is a spectrum disorder without a clear dividing line, some people fall just on the other side of the line — they don’t qualify for autism disorder because of late onset of symptoms, or they don’t have enough behavioral symptoms. However, their disorder significantly impacts daily functioning on a regular basis.

Severe (or “classic”) autism

Sometimes referred to as Kanner’s Syndrome, severe autism is the classic type of autism that books and films often portray to great dramatic effect. You may also hear it called infantile autism, childhood autism, or simply autism disorder. Individuals with the classic type of autism may have more, and are more heavily affected by, symptoms within the areas of communication, social development, and activities and interests that we list in Chapter 1, or they may have only a few obvious ones. Some of the symptoms can be so debilitating — like a lack of functional communication — and the sensory issues so severe that the afflicted can barely stand to remain in their own skin. Other symptoms may be mild; a person may have good verbal communication skills but is unable to understand pragmatics, or the meaning “between the words”.
People who are less-severely impaired by their autism are said to have highfunctioning autism (HFA) or Asperger Syndrome (see the section “Asperger Syndrome” for more on, well, Asperger Syndrome). Language develops late or not at all in people with Kanner’s Syndrome, which is the main distinction between classic autism and Asperger’s, as of this writing. Dr. Temple Grandin, a professor of animal science at Colorado State University who lectures and writes frequently on autism, and Kathy Grant, a political science graduate and autism advocate who has chronicled her sensory sensitivities, are some famous examples of high-functioning people with classic autism.

Surveying the Colors of Autism

Some people classify autism spectrum disorders into subtypes by their presumed causes, but because science hasn’t yet resolved the causes, this practice is controversial and not widely accepted.
You can also look at autism as a spectrum ranging from severe to light. Leo Kanner observed the severe end of autism when he first wrote about the disorder in 1943, discussing children with severe challenges in communication and socialization. There is a perceived homogeneity of people at the severe end of the spectrum as depicted by the circles within the autism spectrum severity wedge in Figure. People with high-functioning autism (HFA) and Asperger Syndrome may be less severely affected, blending into general society. (In this book, Asperger’s is considered part of the autism spectrum, although its precise relationship to autism remains unestablished.) Additionally, the notion of greater diversity of persons at the less severely affected end of the spectrum is depicted with the largest number of different shapes in Figure, as the condition fades into subclinical characteristics of autism and typical society. Persons with autistic tendencies that impact their daily lives but aren’t strong or numerous enough to warrant diagnoses are often referred to as autistic cousins, a term reportedly developed by Kathy Grant when talking about people with a limited number of autistic tendencies at an Autism Network International event run by Jim Sinclair. John Ratey, MD, author of Shadow Syndromes (Bantam) and numerous other books, considers such people to have “shadow autism.”
For the purposes of this blog, we distinguish between Asperger’s and HFA. Some researchers include Attention Deficit/Hyperactivity Disorder (AD/HD) on a broader autism spectrum because of its similarities to Asperger’s, including the challenge of attention; others claim AD/HD is a clinically distinct disorder that may occur simultaneously with autism. We don’t consider AD/HD a part of the autism spectrum in this blog.
On the other hand, some researchers don’t consider Asperger Syndrome to be autism at all; others consider it the same as high-functioning autism. Child researchers Hans Asperger and Leo Kanner both (independently) described autism as a disorder in the 1940s, and speculation has continued on whether they were explaining variations of autism or separate conditions entirely.

Understanding autism

Autistic? You can’t believe your child is autistic. Yes, he spends hours lining up his trucks in formations, but so did you when you were 4 years old, right? If you’ve heard of the disorder, you think of autistic children as closed off to others, angry, nonverbal, and in possession of some kind of special talent, like the ability to do lightning-fast calculations in his head. Your child doesn’t fit this mental image. He seems very calm and expressive. Even if your child doesn’t point to objects, look at you the way his sister did at his age, or initiate conversations unless he wants something, you chalk it up to self-sufficiency and shyness, and you consider his fascination with light switches and toilet handles to be signs of a budding engineering talent. So why is your doctor talking this nonsense about Pervasive Developmental Disorders and autism spectrum disorders? And why would you put your child in some kind of training program when he should be out playing with his friends? Well, come to think of it, he doesn’t seem inclined to play with other kids at all. He doesn’t seem to have any friends.
Autism is a set, or “bucket” of behavioral symptoms that fall along a continuum from normal to abnormal with few dividing lines. Because science offers no brain scan or medical test that clearly identifies specific neurological disorders, diagnosis is still controversial and imprecise. Doctors base diagnosis on behavioral symptoms, which are subject to misinterpretation and may change over time. Symptoms can range from mild to severe. The group of developmental disabilities we cover in this chapter is often called the autism spectrum, and the phrase autism spectrum disorders (ASD) may replace the term (Pervasive Developmental Disorders) PDD in the medical lexicon because people who support those with autism consider it more useful. In this chapter, we outline the subtypes of the autism spectrum and other conditions that people confuse with or that frequently occur along with autism. We also explore the benefits of early detection and treatment. Every child with developmental problems, no matter the terminology that accompanies the problems — whether PDD, autistic, or autistic-like — still needs an individualized program designed to address his or her strengths and weaknesses. The same child may receive different diagnoses from different doctors, although — and this is what you need to keep in mind — the educational prescription is likely to be similar.