Autism is a complex developmental disability that affects some children either from birth or infancy, and leaves them unable to form normal social relationships or develop normal communication. It was first described in 1943 by a psychiatrist named Leo Kanner.
Autism is four to five times more prevalent in boys than girls and knows no racial, ethnic, or social boundaries.(1) Family income, life-style, and educational levels play no role in determining whether the child will be autistic or not. Kanner observed that many of the children with autism seen in clinic came from well-educated, intelligent parents from the middle and upper social classes.(2) Surveys conducted in different countries concluded that between 2 and 4 children in every 10,000 develop autism, usually in the ratio of 3 or 4 boys to each girl. The Autism Society of America's (ASA) equivalent estimate is 300,000 to 400,000 individuals in America.(3)
Autism impacts the brain's normal development in areas of social interaction and communication skills. Autistic children and adults typically have difficulties in verbal and nonverbal communication, social interaction, and leisure or play activities. The disorder makes it hard for them to communicate with others and relate to the outside world. Sometimes, aggressive and/or self-injurious behavior also may be present. Autistic people may exhibit repeated body movements (hand flapping, rocking), unusual responses to people or attachments to objects, and resistance to changes in routines. Individuals also may experience sensitivities in sight, hearing, touch, smell, and taste.(4)
Current research links autism to biological or neurological differences in the brain. Such medical conditions as phenylketonuria (PKU), tuberous sclerosis, and fragile X syndrome have been identified in some autistic children.(5) But not everyone with these conditions becomes autistic. As there are no medical tests for diagnosing autism, an accurate diagnosis requires observing the individual's communication, behavior, and developmental levels. However, because many behaviors associated with autism are shared by such other disorders as mental handicaps and Asperger's syndrome, various medical tests must be tried to rule out or identify other possible causes of the exhibited symptoms.
Since the disorder's characteristics are so varied, ideally a child should be evaluated by a multidisciplinary team consisting of, among others, a neurologist, a psychologist, a developmental pediatrician, a speech/language therapist, a learning consultant, or another professional knowledgeable about autism. Diagnosis is difficult for practitioners with limited training or exposure to autism, and misdiagnoses do occur. Difficulties in recognizing and acknowledging this condition often lead to a lack of services to meet an autistic individual's complex needs.
A brief observation in one setting cannot present a true picture of an individual's abilities and behaviors. Parental (and other caregivers') input and developmental history are important components of an accurate diagnosis. At first, some autistic people may appear mentally retarded, have a behavior disorder or a hearing problem, or even odd and eccentric behavior. To complicate matters further, these conditions can occur together with autism. However, autism must be distinguished from other conditions, since an accurate diagnosis and early identification can provide the basis for devising an appropriate and effective educational and treatment program.
Children within the pervasive developmental disorder spectrum often appear relatively normal in their development until the age of 24-30 months, when parents may notice delays in language, play, or social interaction. By themselves, any such delay would not result in a diagnosis of a pervasive developmental disorder. Autism is a combination of several developmental challenges. The following areas are among those that may be affected by autism (6):
Communication: Develops language skills slowly or not at all, uses words without attaching the usual meanings, communicates with gestures instead of words, and has a short attention span.
Social Interaction: Spends time alone, shows little interest in making friends, and is less responsive to such social cues as eye contact or smiles.
Sensory Impairment: May be sensitive to sight, hearing, touch, smell, and taste.
Play: Shows a lack of spontaneous or imaginative play, does not imitate others' actions, and does not initiate pretend games.
Behavior: May be overactive or very passive; throw tantrums for no apparent reason; show an obsessive interest in one item, idea, activity, or person; exhibit an apparent lack of common sense; may show aggression to others or self; and often has difficulty with changes in routine.
Some autistic individuals may have other disorders that affect the brain's functioning (e.g., epilepsy, mental retardation, Down's syndrome) or genetic disorders (e.g., fragile X, Landau-Kleffner, William's, or Tourette's syndromes). Many of those diagnosed with autism will test in the range of mental retardation. Approximately 25-30 percent may develop a seizure pattern at some point.(7)
As every autistic person is an individual having a unique personality and combination of characteristics, those affected show great differences. For example, some mildly affected individuals may exhibit only slight delays in language and greater challenges with social interactions. They might find it hard to initiate or maintain a conversation. Communication is often described as talking at others.
Autistic people process and respond to information uniquely. Educators and other service providers must consider each autistic person's pattern of learning strengths and difficulties, when assessing learning and behavior, to ensure effective intervention. Individuals with autism can learn when information about how they receive and express information is addressed and implemented in their programs.
Their abilities may fluctuate daily due to difficulties in concentration, processing, or anxiety. Those who show evidence of learning one day may give no such indication the next day. Changes in external stimuli and anxiety also can affect learning. They may have average or above-average verbal, memory, or spatial skills but find it difficult to be imaginative or join in activities. Individuals with more severe challenges may require intensive support to manage the basic tasks and needs of daily life.(8)
Contrary to popular understanding, many autistic children and adults may make eye contact, show affection, smile and laugh, and exhibit other emotions, although in varying degrees.(9) Like other children, they respond to their environment in both positive and negative ways. Autism may affect their range of responses and make it harder to control how their bodies and minds react. Sometimes visual, motor, and/or processing problems make it difficult to maintain eye contact. Some autistic individuals use peripheral vision rather than looking directly at others.(10) Sometimes another person's touch or closeness results in withdrawal even from family members. Anxiety, fear, and confusion may result from being unable to make sense of the world in a routine way.
Therapies are available, among them applied behavior analysis, auditory integration training, dietary intervention, discrete trial teaching, medication, music therapy, occupational therapy, the Picture Exchange Communication System (PECS), physical therapy, sensory integration, speech/language therapy, Treatment and Education of Autistic and Related Communication Handicapped Children (TEACCH), and vision therapy. There are various approaches to psychological therapies, and each one follows a different path. Behavioral therapy would stress shaping such adaptive behaviors as toilet training and decreasing mal-adaptive behavior, analyzing behavior through its causes and consequences to identify factors that would reward or encourage appropriate behavior, and discouraging disruptive behavior. Rewards are usually based on the patient's values.
Behavioral therapy seems to be the most effective, for it replaces inappropriate behavior with appropriate behavior and helps the person fit into society. Psychotherapy probably would not be very helpful, for it is based on the principle that parents must become better parents if the child is to develop emotionally. As parents cannot cause their child's autism, this premise is invalid.(11)
Autistic adults can benefit from vocational training by acquiring job-related skills, and from social and recreational programs. They can live in settings ranging from an independent home or apartment to group homes, supervised apartment settings, with other family members, or in a more structured residential care. More autistic adult support groups are emerging around the country. Many self-advocates form networks to share information, support each other, and speak for themselves in the public arena. They frequently attend and/or speaking at conferences and workshops on autism. Others provide valuable insight into this disability's challenges by publishing articles and books and appearing in television specials about themselves and their disabilities.(12)
TEACCH, a program established by Eric Schopler in North Carolina and widely used in America, includes language- and behavior-focused intervention programs, as well as school and other agency consultation.(13) This treatment also works with parents by encouraging parent training and counseling or facilitating parent support groups.
With appropriate treatment, some behaviors associated with autism may change or diminish over time. Communication and social deficits continue in some form throughout life, but other difficulties may fade or change with age, education, or level of stress. The person often begins to use skills in natural situations and to participate in a broader range of interests and activities. Many autistic individuals enjoy their lives and make meaningful contributions to their community. People with autism can learn to compensate for and cope with their disability quite well.
Studies show that autistic people respond well to highly structured, specialized education programs tailored to their needs.(14) A well-designed intervention may include some elements of communication therapy, social skills development, sensory integration therapy, and applied behavior analysis delivered by trained professionals in a consistent, comprehensive, and coordinated way. The more severe challenges of some autistic children may be best addressed by a structured education and behavior program featuring a one-on-one teacher-to-student ratio or a small group environment. However, many other autistic children may succeed in a fully inclusive general education environment if they receive appropriate support.
Some autistic adults live and work independently, drive a car, earn a college degree, or get married. Others may be fairly independent and only need some support for daily pressures, while some depend on a great deal of support from family and professionals.
In addition to appropriate educational supports, autistic students should receive training in functional living skills at the earliest possible age. Learning to cross a street safely, buying something, or asking for help are critical skills that may be hard even for those of average intelligence. Tasks that enhance the person's independence and give more opportunity for personal choice and freedom are important.
To be effective, an approach should be flexible, rely on positive reinforcement, be re-evaluated regularly, and provide a smooth transition from home to school to community environments. A good program also incorporates parent and caregiver training and support systems, along with general skills for all settings. Rarely can a family, teacher, or other caregiver provide effective help unless offered consultation or in-service training by an experienced specialist who is knowledgeable about autism.
Research into this puzzling condition continues. According to the Associated Press, (Nov. 28, 2000): Scientists have long theorized that about (15) different genes play a role ... and now they've finally found one of those genes... The NIH [National Institutes of Health] called the finding a significant step in understanding what predisposes people to developing autism.15