Autism is a complex and life-long developmental disability. A broad range of developmental disorders are collectively known as Autism Spectrum Disorders (ASD); these disorders include the following:
- Autism—the prototypical disorder of the group;
- Asperger’s Syndrome—refers to individuals with autistic characteristics but relatively intact language abilities;
- Pervasive Developmental Disorder—Not Otherwise Specified (PDD-NOS)/ Atypical Autism—refers to a collection of features that resemble autism but may not be as severe or as extensive;
- Rhett’s Disorder—relatively rare, primarily affects females, and is a genetic disorder with hard neurological signs (including seizures) that become more apparent with age;
- Childhood Disintegrative Disorder (CDD)—rare, primarily affects males, and refers to children whose development appears normal for the first few years, but then regresses with loss of speech and other skills until the characteristics of autism are apparent.
The estimated prevalence of autism ranges from 2-6 per 1000 children; it is more prevalent in boys than girls. While autism can be diagnosed at any age, it is usually diagnosed by age three years through late preschool age. Milder conditions within the autism spectrum, including Asperger’s Syndrome and PPD-NOS may present later, if at all, and can be more difficult to recognize. Rhett’s Syndrome and Childhood Disintegrative Disorder are rare, but are more severe disorders. The following core features of ASD form the basis for diagnostic criteria used by the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV):
- Impaired social interaction and social development,
- Impaired language, verbal and non-verbal communication,
- Restrictive and repetitive behavior patterns.
Possible indicators of ASD include:
- Does not babble, point, or make meaningful gestures by one year of age;
- Does not speak one word by 16 months of age;
- Does not combine two words by two years of age;
- Loses language or social skills.
Other indicators that may be present are:
- Does not respond to name;
- Poor eye contact;
- Doesn’t seem to know how to play with toys;
- Excessively lines up toys or other objects;
- Is attached to one particular toy or object;
- Doesn’t smile;
- At times seems to be hearing impaired;
- Unprovoked aggressive or violent behavior toward self or others;
- Problems with attention, concentration, or sleep;
- Unusual or inappropriate responses to sensory stimuli;
- Property destruction;
- Pica (a perverted appetite for substances not fit as food or of no nutritional value, e.g., clay, dried paint, starch, ice);
- Defiance and tantrums;
- Not wanting to cuddle or to be cuddled; or
- Physical over-activity or under-activity.
Children and adults with autism can exhibit any combination of these behaviors in any degree of severity. Also, two children with the same ASD diagnosis can behave completely different from each other and have different capabilities.
Early in life, developing infants are social beings; they gaze at people, turn toward voices, grasp a finger, smile. In contrast, autistic children have difficulty learning to engage in everyday human interaction. They avoid eye contact, prefer to be alone, seldom seek comfort or respond to parents’ displays of anger or affection. They can be slower to learn to interpret social cues, such as a smile, a wink, or a grimace, and they appear to have difficulty seeing things from another person’s perspective. They also have difficulty regulating their emotions, which leads to apparent “immature” behavior, inappropriate emotional outbursts, disruptive behavior, and physical aggression. Some autistic children remain mute throughout their life. Those who do speak may use language in unusual or inappropriate ways; for example, they may not be able to combine words into meaningful sentences, or they may speak only one word or repeat the same word(s) over and over. Children who have milder forms of ASD may exhibit slight delays in language, or they may have large vocabularies but have difficulty carrying on a conversation. In addition, their body language may not be appropriate to what they are saying. Repetitive behavior in autism can take the form of persistent, intense preoccupation. Consistency in the environment is very important as a small change in routine can be extremely disturbing to the autistic child.
Although autism is considered a neurological disability, the etiology is unknown. A number of causes have been suggested, including genetics and heredity, problems during pregnancy or delivery, viral infections, metabolic imbalances, exposure to environmental chemicals, harmful substances ingested during pregnancy, and vaccines; none of these have been proven. Many children with ASD have some degree of mental retardation/intellectual disability, and about one in four develop seizures. Children with ASD tend to have certain medical conditions more often than expected, such as FraX, tuberous sclerosis, congenital rubella syndrome, and untreated phenylketonuria (PKU). FraX, in which the X chromosome is defective, is the most common inherited form of mental retardation/intellectual disability, and occurs in about 2-5% of people with ASD. If a child with ASD also has FraX, there is a 50% chance that boys born to the same parents will have the syndrome. Tuberous Sclerosis is a rare genetic disorder that is present in 1-4% of people with ASD.
A variety of treatment approaches have been developed that address the social, language, and behavioral difficulties of ASD. While many have not been proven to be effective, some general guidelines have emerged. Generally, interventions should
- begin early and focus on teaching functional skills of immediate and ongoing value in daily life,
- be individualized to the type and severity of symptoms,
- provide structure and clear guidelines, and
- include family involvement.
Applied Behavioral Analysis (ABA), an Early Intensive Behavioral Intervention (EIBI), encompasses behavior modification training programs that are based on the theory that behavior is learned through interaction between an individual and the environment. The goal of behavior management is to reinforce and increase desirable, functional behaviors while reducing undesirable, “maladaptive” behaviors. Lovaas therapy is an ABA-based program developed by Ivar Lovaas, Ph.D., at the UCLA Clinic for the Behavioral Treatment of Children. Lovaas therapy uses an ABA method called Discrete Trial Training, which consists of a series of distinct repeated lessons or trials taught one-to-one. Typically the lessons are highly intensive, usually taking 30-40 hours per week, and are conducted by a trained therapist, usually in the family’s home. Each trial consists of a request for the individual to perform an action, behavior, or response, and involves a consequence or reaction from the therapist. Positive reinforcement rewards vary and are matched to the individual child.
Other types of intensive interventions that use ABA techniques include LEAP (Learning Experiences and Alternative Programs), TEACCH (Treatment and Education of Autistic and Related Communication of Handicapped Children), the Denver program, and the Rutgers program. LEAP, is a comprehensive program for young children that includes peer-mediated instruction, incidental teaching, self-management training, prompting strategies, and systematic parent training. TEACCH uses a structured teaching approach based on the idea that the environment should be adapted to the child, not the autistic child to the environment. The child’s learning abilities are assessed using a Psycho Educational Profile (PEP) and, based on the child’s functioning level, teaching strategies are designed to improve communication, social, and coping skills to help the child understand his environment and the behavior of other people. The Denver program is a developmental-based program that focuses on the development of communication and play skills, sensory activities, personal independence, and reducing unwanted behaviors. The Rutgers program is an early intensive behavioral intervention program that is home-based and is similar to Lovaas therapy, except that the program staff doesn’t deliver treatment directly; the staff provides training and follow-up to the family and school, with the goal to gradually integrate the child into the classroom.
Picture Exchange Communication Systems (PECS) was developed to help autistic children acquire functional communication skills. PECS uses ABA-based methods to teach children to exchange a picture for something they want—an item or an activity.
Pivotal Response Treatment (PRT) is a “naturalistic” intervention model that targets pivotal areas of a child’s development. In PRT, the child’s intentional attempts at functional communication are rewarded with a natural reinforcer. For example, if a child attempts a request for a stuffed animal, the child receives the animal, not a piece of candy or other unrelated reinforcer. PRT is used to teach language, decrease disruptive behavior, and increase social, communication, and academic skills.
Floor time is an educational model that builds an increasingly larger circle of interaction between the child and adult in a developmentally-based sequence. Floor time addresses emotional development, in contrast to other approaches that tend to focus on cognitive development. Floor time is often used in conjunction with other methods, such as ABA.
Social stories were developed as a tool for teaching social skills. The stories have three types of sentences: descriptive to explain what is happening, perspective to provide insight, and directive to suggest a response. The stories can be written by anyone, are specific to the child’s needs, and are written in first person and present tense. The story should address the child’s misunderstanding of situations that are frightening to him, produce tantrums or crying, or make the child withdraw, and should teach the child how to deal with those feelings.
Facilitated communication (FC) involves a facilitator who, by supporting the individual’s hand or arm, helps the person communicate through use of a computer or typewriter. FC is very controversial; critics claim it is actually the ideas or thoughts of the facilitator that are being communicated.
Sensory integration therapy (SIT) focuses on desensitizing the child and helping him reorganize sensory information. The goal is to help the nervous system develop the ability to process sensory input more normally. Touch therapy is a particular method of massage.
Auditory integration training (AIT) involves listening through earphones to music that has been electronically modulated based on the individual’s audiogram. AIT is thought to improve attention, auditory processing, and auditory comprehension.
Relationship Development Intervention (RDI) training was developed by a husband-and-wife team of clinical psychologists, Steven Gutstein, PhD, and Rachelle Sheely, PhD. The goal of RDI training is to teach the child how to develop social relationships with other people, starting with their parents. A consultant teaches the parents how they can help the child develop a social relationship with the parents and others, through various activities, e.g., playing games, mimicking facial expressions, etc.
Other interventions include music, art and animal therapy (e.g., horseback riding, swimming with dolphins), administration of intravenous secretin or immune globulin, chelation therapy, special diets, and vitamin and mineral supplements. Music, art and animal therapy are believed to improve communication skills, develop social interaction, reduce behavioral symptoms, and provide a sense of accomplishment. Use of immune globulin is based on the assumption that autism is caused by an autoimmune abnormality. Secretin, a peptide hormone that stimulates the pancreas and liver, is thought to be useful to manage autistic behavior based on theories of gastrointestinal disorders as the cause of autism. Chelation therapy, which uses medications to help the body eliminate toxins, is based on mercury exposure as a possible cause of autism. Restrictive or special diets are based on the idea that autism is caused by digestive disorders or food allergies. Nutritional supplements are based on the theory that vitamin B6 and magnesium can improve autistic behavior.