UNDERSTANDING AUTISM

Autism is a developmental disability that usually shows symptoms between 18 and 36 months. Autism affects children in many different ways and, as a result, is medically referred to as a "spectrum disorder."

More than 500,000 people in the United States have been diagnosed with autism; it occurs in one in 500 individuals and is four times more prevalent in boys than girls. In the last 5 years, autism has become the third most common form of developmental delay, and now occurs more commonly than Down syndrome. Because there is nothing abnormal about the child's physical appearance, this disorder can be difficult to recognize.

Causes

There is no one specific cause of autism. Current research focuses on biological and neurological differences in the brain, including biochemical imbalances, genetic influences, and immunologic problems. Adverse reactions to rubella or pertussis immunizations, food allergies, excessive amounts of yeast or 'candida albicans' in the digestive tract, and exposure to environmental toxins have all been implicated.

Symptoms

Children exhibit mild to severe symptoms of delay, in many combinations and varying degrees of severity, although in all cases, the ability to communicate and social interaction are the most impaired functions.

About half of all children with autism have slowed development, especially in language and social skills. The other half develop fairly normally until 18 to 36 months and then begin to regress in speech patterns and social skills. Speaking is often limited to a few repeated or "echoed" words or phrases; some children stop speaking altogether. Some children with autism withdraw from physical contact with other people and do not make eye contact.

Children with autistic characteristics prefer to play alone and seldom play fantasy/imaginary games. Many autistic children engage in repetitive movements like rocking or hand flapping, and they sometimes have tantrums with self-inflicted injuries. There is also marked resistance to change in daily routines and unusual responses to many sensory experiences, especially to some auditory stimuli like sudden, loud noises or high-pitched sounds. They may be obsessed with predictable rituals and sometimes play with only one part of a toy.

But some children with autism have just a few of these symptoms and appear to be developing within normal expectations, although somewhat slowly.

Diagnosing autism

Autism cannot be detected at birth or through any prenatal screening. There does appear to be a genetic link, however; parents of a child with autism have an 8% to 10% chance of having another child with the same disorder or a similar disorder.

Because autism is difficult to recognize and diagnose, it is important that families seek an evaluation by a medical professional experienced in diagnosing and treating the disorder.

"Seek an evaluation as soon as possible. There is a lot of evidence that if something is wrong, early intervention gets the best results. If your child is nearing 18 months or 2 years old and is not gesturing, it may indicate a breakdown in communication development," says Robert Naseef, PhD, the father of a son with autism and a family psychologist who specializes in working with families of children with disabilities.

Susan Stine, MD, a developmental pediatrician at the Alfred I. duPont Hospital for Children in Wilmington, Delaware, advises parents to "closely document your observations and report them to your pediatrician, who can then advise you regarding further referrals." Physicians will order any indicated medical tests and will prescribe appropriate medications if needed. You may be referred to a developmental pediatrician, a pediatric psychiatrist, or a pediatric neurologist for the diagnosis.

A multidisciplinary team composed of a specialist physician, a pediatric psychologist, a speech/language pathologist, an occupational therapist, and a special education teacher or early childhood educator may all work with you to assess your child's development and behavior and plan a treatment program.

Helping your child

You play an extremely important role in helping your child develop. Like other children, children with autism learn primarily through play. "Join your child where he is, in play that is mutually enjoyable," Dr. Naseef says. "With autism, the trick is to pull kids through their repetitive behaviors and rituals, and guide them to activity with more variety. For example, you can pace around the room with them, but then lead them into another room. You need to enter their world to help guide them into yours."

Verbal praise for work well done is sometimes meaningless for children with autism. Find other ways to reinforce good behaviors and promote self-esteem. After your child has successfully completed a task, for example, give him extra time to play with a favorite toy.

Children and adults with autism learn better when information is presented visually as well as verbally. Incorporate "augmentative communication" into your daily routines by combining the spoken word with the presentation of photographs, symbols, or gestures to help your child make his needs, feelings, and ideas known.

"Our goal for every child is for them to speak," says Jean Ruttenberg, executive director of the Center for Autistic Children in Philadelphia, Pennsylvania. "But part of autism is that they don't play well, and all children learn vocabulary through play. We always speak to the children, but we use all means of communication with them - gesture, pictures, symbols, sign language, technology." Daily schedules, favorite foods and activities, and friends and family members can be part of the picture system, assisting children to communicate with the world around them.

Early intervention programs

Finding a good early intervention program can be the most important thing you do for your child, Dr. Stine says. "A specialized educational approach is the treatment that has withstood the test of time for children with autism. The initial thrust is to 'break through' the child's social interaction barriers and emphasize communication with other people whether by pointing, using pictures, and sometimes sign language as well as speech."

Early intervention programs offer educational and therapeutic services to children under the age of 3 who have been diagnosed with a physical or cognitive disability. Physical and occupational therapy, speech and language therapy, early childhood education, and sensory stimulation are typically included in these programs. Private agencies such as Easter Seals, United Cerebral Palsy Association, Intermediate Units or child study teams in each school district offer early intervention programs depending on where you live. Your child's doctor or local Association for Retarded Citizens (ARC) can refer you to a local program.

Early intervention staff members will help you and your child move from early intervention into the public school system. The Individuals with Disabilities Education Act (IDEA) protects the educational rights of children with disabilities, and requires that local school districts provide free preschool services for children with disabilities starting at the age of 3. Early intervention staff members will also help you choose the most appropriate setting for your child's education - in a "regular" classroom in your local neighborhood school, in an autistic support classroom in another school, or in an approved private school offering more intense educational and therapeutic services in classes with low student to teacher ratios.

Educational programs for children with autism are highly structured, emphasize communication and social skills, and include positive behavior management techniques. Strategies used in the classroom should also be implemented at home so that your child has predictable physical and social environments.

Although it is rare, some parents, like Dr. Naseef, will face the difficult decision of placing their child in a residential school. When one child's needs overwhelm the family's ability to live in a peaceful, affirmative lifestyle, parents may consider a residential placement for the well-being of the child who is disabled and for the well-being of other family members. Naseef reminds families that there "needs to be some balance between the family's needs and the child's needs. And families need to know that there are safe, good, nationally known and respected programs that will help the child achieve greater independence in a safe environment."

Other educational supports

Educational support services such as speech, occupational, and physical therapy are part of your child's school day. Life skills, such as cooking, shopping, or crossing the street, will be incorporated into the child's individualized education plan (IEP) to promote independence. The overall goal for your child is to develop his social and communication skills to his highest level or for your child to develop to his greatest potential.

The classroom environment

The physical organization and layout of the classroom can help reduce frustration. There should be:

• few doorways to minimize escapes a bathroom in the classroom or nearby specific learning stations to provide order organized supply bins to help the students in getting their own materials
• quiet areas should be designated for individual learning, with group activities taking place on the other side of the room. Your child's individual needs should be taken into consideration when determining where he will be seated in the classroom.

Controversial treatments

In facilitated communication (FC), a "facilitator" supports the hand, arm, or shoulder of the person with a communication disorder and assists him in extending a finger to either point to or press the keys of a computer keyboard or a communication picture board. FC is defined as "an alternative means of expression for people who cannot speak, or whose speech is highly limited (e.g., echoed, limited to one or a few word sentences), and who cannot point reliably," according to the Facilitated Communication Institute at Syracuse University.

There has been much controversy surrounding FC. Critics say that it is the facilitator communicating, not the person with the disability. However, supporters say that FC does indeed communicate the thoughts of a person otherwise unable to "speak."

The hormone secretin has been given recent attention as a breakthrough treatment for autism. Its only current FDA-approved use is in the diagnosis of gastrointestinal problems, but researchers and physicians are studying the possible link to improved communication and social interactions in children who have received injections of secretin.

Accepting the diagnosis and the future

Learning that your child is autistic can be wrenching for parents. As Naseef says, "when a parent 'loses' a living child, there is always mental torment." Parents often move through the emotional stages of grief: denial, anger, bargaining, depression, and acceptance. Ongoing professional counseling can help your family accept the diagnosis, move forward, and learn how to best help your child develop to his greatest potential.

During adolescence, some aggressive behaviors can become increasingly difficult to handle and can be coupled with depression. Ask your child's doctors for help with appropriate pharmacological, psychological, and educational interventions.

As with any child, the future is unpredictable. Some children with autism will grow up to lead independent lives. Others will always need supported living and working environments. But all children with autism need the nurturing guidance of parents, teachers, physicians, and caregivers who will help them experience fulfilling, happy lives.