More children and families than ever before are facing the challenge of ‘mindblindness.’ The causes are still a mystery, but research is offering new clues to how the brain works.
More than 50 years ago Dr. Leo Kanner, a psychiatrist at Johns Hopkins University, first used the term autism to describe a group of children who were self-absorbed and who had severe social, communication and behavioral problems. The big questions of what causes it and whether it can be prevented or cured are still unresolved. But with the recent increased interest in how the brain works, the pace of discovery has accelerated. Scientists are gaining insights into the autistic mind, with its odd capacity for genius as well as detachment. And though the suspected causes range from genetic mutations to food allergies, viruses and toxic chemicals; we now know it’s a brain-based developmental disorder and not a result of poor parenting. The condition may never be wiped-out, but science is making autistic life more livable, and enriching our whole understanding of the mind.
What Is Autism?
The core of the growing body of research now suggest that all autism is a syndrome known as mindblindness. For most of us mind reading is as natural as chewing. We can read people’s intentions realizing that thoughts and feelings are revealed in gestures, facial expressions and tone of voice. An autistic person may miss it all.
It’s easy to understand how mindblindness would impact a person’s social development. If you can’t perceive another person’s mental states, you can’t appropriately respond. For example, sharing becomes pointless if you can’t see it’s impact on people.
Experts say that autism impacts the normal development of the brain in the areas responsible for social interaction and communication skills. This developmental disability typically appears during the first three years of life. The Autism Society of America says those with autism usually have difficulties in verbal and non-verbal communication, social interactions and leisure or play activities. They may have difficulty communicating with others and relating to the outside world. They sometimes exhibit repeated body movements (hand-flapping, rocking), unusual responses to people or attachments to objects, and may resist changes in their routine. In some cases, aggressive and/or self-injurious behavior may be present.
The text book definitions have a wide range of manifestations. Lisa Schatz says her two autistic children are the same, yet different. “They both have severe attention problems and are easily distracted. My daughter has much more language and communication skills. She has fabulous play skills and can pretend. She talked at a year, but she was echolalic (imitation of phrases). Her first words were songs from a video. My son was reading at 2 ½ but couldn’t talk. He can play Nintendo and download information from the Internet, but he has no imaginative play skills. He can’t play Power Rangers.”
Some parents say their child had an unusual ability at age two, such as naming all the colors. These children don’t go on to develop an intentional communication system to initiate and sustain interaction.”
Three out of four classically autistic people are thought to be mentally retarded. A third suffer from epilepsy, and most end up in institutions by the age of 13. Newsweek (7/31/00) quotes one activist mother who describes it this way, “It’s like ‘The Village of the Dammed’,” she says, “It’s as if someone has stolen into your house during the night and left your child’s bewildered body behind.”
Over one half million people in the U.S. have some form of autism. Its prevalence rate places it as the third most common developmental disability, more common than Down’s Syndrome. It is also more likely to affect males. “There is a documented increase in the number of people with autistic-like tendencies,” says Parshley. “It is now believed to affect one person in 500. If the symptoms are mild, the doctor may not diagnose it as autism.”
Many autistic infants are different from birth says Stephen M. Edelson, Ph.D. of the Center for the Study of Autism in Salem, Oregon. “Two common characteristics they may exhibit include arching their back away from their caregiver to avoid physical contact and failing to anticipate being picked up (i.e., becoming limp). As infants, they are often described as either passive or overly agitated. During infancy, many begin to rock and/or bang their head against the crib; but this is not always the case.”
What Causes Autism?
Edelson says there is no known unique cause of autism. “There is some indication of a genetic influence,” he says. For example, there is a greater likelihood that identical twins will have autism than fraternal twins. He cites a study conducted in Utah in which researchers identified 11 families in which the father had autism. Of the 11, there were a total of 44 offspring, 25 of whom had autism.
Schatz believes there’s a genetic link in her family. “I see autistic behaviors in my generation. One family member is an eccentric genius. He shows traits of Asperger’s (see sidebar, The Spectrum of Autism), but they didn’t have a name for it back then.”
Edelson says there is also evidence that a virus can cause autism. There is an increased risk of having an autistic child after exposure to rubella during the first three months of pregnancy. There is also speculation that viruses associated with vaccinations, such as the rubella vaccine and the pertussis component of the DPT shot, may cause autism. However, most doctors still insist that there is no conclusive evidence about the vaccine hypothesis. Experts are still virtually unanimous in urging parents not to forgo vaccines in trying to protect their kids. The measles virus can kill.
“There is growing concern that toxins and pollution in the environment can also lead to autism,” says Edelson. There is a high prevalence of autism in the town of Leomenster, Massachusetts, where a factory manufacturing sunglasses was once located. Another autism cluster is being investigated in Brick Township, NJ. A grassroots organization, Parents of Special Services and Education (POSSE) has documented at least 26 cases of autism among township children between the ages of 3 and 7 and nine among children whose parents once lived in Brick.
An epidemiologist from the Centers for Disease Control and Prevention in Atlanta has begun interviewing families there and an affiliated organization, the Agency for Toxic Substances and Disease Registry, is compiling data on suspected sources of pollution such as local landfills and the Metedeconk River. Preliminary results are expected to be available this Spring.
Researchers have also located several brain abnormalities in people with autism; a dysfunctional immune system has also been associated with the disorder.
Diagnosing the Disorder
Autism is defined and diagnosed behaviorally. The most widely used tool is described in the Diagnostic and Statistical Manual – Fourth Edition (DSM-IV).
A diagnostician assesses the child in the areas of social interaction, communication and patterns of behavior, and interests and activities. Impairment in any of these areas can be subtle, apparent or anywhere in between.
Social interaction takes into account the use of nonverbal behaviors when interacting with others. Autistic children may show deficits in eye contact, facial expressions, gestures or other nonverbal behaviors. A lack of development of peer relationships is frequently present and may range from having no interest to having an interest but lacking the skills necessary to socialize.
In evaluating communication skills, there is typically a delay or lack of development of spoken language. Those with autism generally do not compensate for this lack through alternative forms of communication such as gestures. Those who develop speech have unusual speech patterns such as imitation of phrases they have heard (echolalia). There is also a lack of spontaneous “make-believe” play or imitative play.
The third area diagnosticians assess is overall patterns of behavior, interests and activities. Those with autism have a limited repertoire of interests and activities; they exhibit repetitive behaviors and adhere to routines. They can have an unusually intense interest in a topic, such as cars or may exhibit repetitive body movements such as rocking and arm-flapping.
Diagnosis Needs Six of Twelve Criteria
To receive a diagnosis of Autistic Disorder an individual must exhibit at least six of twelve criteria. These six must include two from social interaction, one from communication and one from overall patterns of behavior.
A diagnosis of PDDNOS may be given if fewer than six criteria are exhibited or the characteristics are relatively mild in severity. The authors of the DSM-IV admit that the diagnosis is subjective. Since there are no established guidelines for measuring the severity of symptoms, the line between autism and PDDNOS can be fuzzy.
To add fuel to the fire, Bernard Rimland, Ph.D., of the Autism Research Institute in San Diego, contends, “There is no such thing as PDD. PDD is a label concocted by psychiatrists to cover up the fact that they don’t know what your child does have.” He cites a 1991 statement in the Autism Research Review International in which the authors wrote, “Autism, rather than being a pervasive disorder, is in fact a specific one, characterized by deficits in social and cognitive functioning.”
And, Stanley I. Greenspan, M.D., a Clinical Professor of Psychiatry and Behavioral Sciences and Pediatrics at The George Washington University Medical School advocates for a diagnosis of Multi-Sensory Developmental Disorder (MSDD). “Is it really different? Does it have a specific usefulness beyond what we do and know already?” asks Lisa Nalven, MD, a Developmental Behavioral Pediatrician at The Valley Health Center for Child Development and Wellness. “The DSM-IV is the most widely used tool for diagnosing PDD and autism. However, the criteria has an adult focus. What Greenspan has done is to translate how the criteria applies to kids. His model is descriptive and it’s useful with parents to describe their child. Schools and insurance companies don’t know what to do with a MSDD diagnosis. What’s more important is to appropriately describe the child’s behaviors and to address them through therapy.”
The Spectrum of Autism
“There is no adjective which can be used to describe every type of person with autism because there are many forms of this disorder,” says Stephen M. Edelson, Ph.D. of the Center for the Study of Autism. “For example, some individuals are anti-social, some are asocial, and others are social. Approximately half have little or no language, some repeat (or echo) words and/or phrases, and others may have normal language skills. The diagnosis of autism is given when an individual displays a number of characteristic behaviors.”
Research has shown that many people who engage in autistic behaviors have related but distinct disorders:
Asperger Syndrome is characterized by concrete and literal thinking, obsession with certain topics, excellent memories, and being “eccentric.” Considered high-functioning, these individuals are capable of holding a job and of living independently.
Fragile X Syndrome is a form of mental retardation. Approximately 15% of people with Fragile X exhibit autistic behaviors including delay in speech/language, hyperactivity, poor eye contact and hand-flapping.
Those with Landau-Kleffner Syndrome exhibit autistic behaviors such as social withdrawal, insistence on sameness and language problems. They are thought to have “regressive” autism because they appear to be normal until sometime between ages 3 and 7. They often have good language skills in early childhood but gradually lose their ability to talk.
Rett Syndrome is a degenerative disorder which affects mostly females and usually develops between ½ to 1 ½ years of age. Characteristic behaviors include loss of speech, repetitive hand-wringing, body rocking and social withdrawal.
Williams Syndrome is characterized by developmental and language delays, sound sensitivity, attention deficits and social problems. In contrast to many autistic individuals, they are quite sociable.
About 10% of autistic individuals have savant skills. This refers to an ability considered remarkable by most standards. These skills are often spatial in nature, such as special talents in music and art. Another common savant skill is the mathematical ability to multiply large numbers within a short period of time. Others can determine the day of the week when given a specific date in history.
Advice for Parents
Autism is a lifelong condition, but early action can make it less devastating.
- Get a diagnosis. If you’re concerned, see a doctor who’s familiar with autism. Don’t assume the child will catch up.
- Get help. Special schooling and speech therapy are often critical.
- Know your rights. The government mandates services. Consult the National Information Center for Children and Youth with Disability (www.nichcy.org/index.shtmll).
- Seek support. Resources include the National Alliance for Autism Research (www.naar.org), the Autism Society of America (www.autism-society.org), Autism Resources (www.autism-info.com) and Families for the Early Treatment of Autism (feat.org). (Ed.Note: Central Georgia Chapter of Autism Society of America, president Liz Heslin at 471-1393.)
Next month, Understanding Autism Part II – Intervention, Alternate Treatments, Programs, Resources, and the Future for Kids with Autism.