In recent years, the term "autism" has become commonplace in magazines, in the movies, and in discussions between parents. The following information is a brief overview on autism. It would be impossible to include every facet of this complex disorder, but the basic facts are as follows.

Autism
Frequently asked questions about autism.

Autism
1. What is autism?
2. How common is autism?
3. What causes autism?
4. What are the symptoms of autism?
5. How is autism diagnosed?
6. Are there any tests for autism?
7. Is there a cure for autism?
8. What therapies are available?
9. Which therapy is effective?
10. What is known about "alternative" therapies?
11. How will I know if a therapy is working?
12. Are medication used in the treatment of autism?
13. Where can I get more information about autism?

1. What is autism?

Autism is one disorder in a complex spectrum of developmental disabilities. Pervasive Developmental Disorder (PDD) is a more general term used to describe several developmental disorders, including Autistic Disorder, Asperger Syndrome, Childhood Disintegrative Disorder, and Rett Syndrome. PDD affects the normal development of the brain in the areas of social interaction and communication skills. Since it is a spectrum of disabilities, the symptoms can become evident in a variety of combinations. The disabilities can be mild to severe. For the purposes of this article, the term "autism" will be used and refers to any of the disorders that fall within the spectrum.

2. How common is autism?

It is estimated that autism spectrum disorders occur in 2 to 6 per 1000 persons (500,000 to 1,500,000 people in the US). It is four times more prevalent in boys. It affects all races, ethnic groups, and social classes. It is one of the most common developmental disabilities. Since the disorder can take on a mild form, the public may be unaware of all of those affected by autism.

3. What causes autism?

A single cause is not known despite considerable research that has been done. It is known that bad parenting or immunizations do not cause these disorders. Recent research strongly suggests a genetic basis, but a single genetic link has not been discovered. Current research in looking at the chemical, biological, and neurological differences in the brain of those affected by the disorder.

4. What are the symptoms of autism?

Most children with autism appear normal in the first year or two of life. Parents often notice delays in language skills and the way a child plays or interacts with others. Children may be overly sensitive or under-responsive to stimulation of the five senses (Hearing, Touch, Smell, Taste, and Sight). Repetitive behaviors (hand flapping, rocking, echoing words) may also be seen. Behavior may be aggressive (at self or others) or very passive. In retrospect, after diagnosis, past behaviors that were thought of as "normal" may have been subtle symptoms.

5. How is autism diagnosed?

An accurate diagnosis of autism or any of the related disorders requires multiple observations of the child's behavior, communication, and developmental skills. It is difficult to diagnose because of the variety of presentations these disorders have. Evaluation by a multidisciplinary team is thought to be the diagnostic standard. The team of specialists might include a neurologist, psychologist, developmental pediatrician, speech/language pathologist, occupational therapist, and a genetics counselor. Parental observations are also very important.

6. Are there any tests for autism?

No, there are no specific medical tests that can be done to diagnose autism. Instead, tests are done to rule out other underlying problems that may be the cause of the developmental delays. Blood tests may be done to rule out lead poisoning, metabolic diseases, and genetic disorders. An electroencephalogram (EEG), a tracing of the brain's electrical activity, may also be done to rule out the possibility of a seizure disorder as the cause of a child's behavior issues. A hearing test is done to rule out a hearing deficit that may interfere with language skills. A CAT scan of the brain is usually not indicated. Newer tests that measure by-products of proteins from the diet in the urine do not have FDA approval and should not be viewed as diagnostic.

Beyond the medical tests that are part of the diagnostic work-up, there are many psychiatric, developmental, and behavioral tools that are used by trained specialists. These specialists make up the multidisciplinary team that is recommended in making the diagnosis of autism.

7. Is there a cure for autism?

No. Autism is a life-long disorder. However, there are many therapies available to lessen the symptoms and to develop better coping strategies for managing the symptoms of autism, but none are known to be curative.

8. What therapies are available?

The answer to this question is a very complex one. There are so many therapies available that it is mind-boggling. Some therapies are traditional and time-tested, while others are just a passing fad. Unlike other disorders, there are no published treatment guidelines or protocols for autism. However, experts do agree that therapy should be started early and should target the deficits or delays that are common in children with autism — communication and behavior issues. Comprehensive treatment usually includes speech therapy, occupational therapy, and behavior modification. Within each of these entities are many types of interventions. Outlined below are the more common approaches.

Occupational Therapy (OT) addresses sensory-motor skills of a child with autism as well as many other disorders. The ultimate goal of traditional OT is assisting the child in participation of daily life tasks and activities as independently as possible. OT should be a major component of a treatment plan for autistic children.

Sensory Integration (SI) Therapy is among the latest subspecialties of Occupational Therapy. It is based on the theory that autistic children have difficulty perceiving incoming sensory information. The goal of SI is to control sensory input during age-appropriate activities to either reduce or increase an autistic child's response to external stimuli through repeated exposure. Despite the popularity of SI, there is little to no scientific data available on its use or effectiveness.

Behavioral Modification Therapy is usually started in all children with autism. There are many different behavioral therapies available, each with a different set of teaching principles. The goal of behavioral therapy is to improve a child's social development through behavior modification. Ideally, autistic children would "normalize" their behavior so that inclusion in a regular classroom setting would be possible.

Developed by Professor Ivaar Lovaas from UCLA, Discrete Trial Training (DTT) is a very intensive therapy that teaches a child how to learn through repetition of behavioral responses. This therapy requires one-on-one sessions with specially trained teachers, 40 hours per week for 2 to 3 years. Needless to say, this therapy is expensive and not a choice for many families. This therapy has been promoted as THE treatment for autism, yet there is no comparative research to support the claim. Modifications of Dr. Lovaas' theory have evolved into other forms of behavioral therapy, Intensive Behavior Intervention (IBI) and Applied Behavior Analysis (ABA). All of these therapies are started in the preschool years in hopes of achieving kindergarten readiness with developmentally normal peers.

Division TEACCH is an acronym for Treatment and Education of Autistic and related Communication-handicapped CHildren. The program was developed at the University of North Carolina in Chapel Hill. The goal of TEACCH is to provide a structured learning environment for children with autism to optimize their individual strengths and independence. The program is multidisciplinary and involves the family and community. Treatment is intensive - 5 hours a day, 5 days a week in a TEACCH classroom. This intervention is popular and is supported by years of anecdotal data on its success. Very little scientific data exist on the outcomes of TEACCH.

Dr. Stanley Greenspan, MD, a well-known, highly published child psychiatrist developed "Floor Time" as a treatment for autism. This therapy is based on his Developmental, Individual-Difference, and Relationship-based (DIR) model. This theory posits that further learning and development can only be obtained after meeting six relationship-based milestones. The goal of "Floor Time" is to help the autistic child overcome sensory processing issues so these relationship-based milestones can be achieved. Therapy consists of 6 to 8 30-minute sessions of child-guided "play" each day. Parents are taught to do the therapy at home. Many Occupational Therapists use this model in their daily treatment plans for autism. There is no scientific evidence to support the use of this therapy.

Inclusion Therapy involves putting autistic children in classrooms of developmentally normal children. It is thought that an autistic child will naturally learn from his "normal" peers in the academic environment. An aide is assigned to the autistic child and the curriculum is modified to address the child's strengths and weaknesses. It is thought that autistic children placed in inclusive environments have better verbal and social skills. However, this has not been proven.

Carol Gray developed Social Stories (Social Scripts) in 1991. Its main goal is to clarify social expectations, teach the "rules" of society, and encourage self-management in social situations. The "scripts" that are written are individualized to a certain person and situation. The "scripts" are read and reread until the behavior is learned. Behavior is thought to improve with this repetition. However, there is no scientific evidence supporting this claim.

Speech-Language Pathology covers a wide range of disorders. Speech disorders are defined by a difficulty in producing the sounds of language. Language disorders are defined by a difficulty in understanding language or using words in spoken communication. Autistic children often present with both issues. Therapy is aimed at improving verbal and nonverbal communication skills.

PECS is an acronym for Picture Exchange Communication. This program, often seen within a TEACCH environment, goes beyond traditional speech therapy. This type of therapy helps a child attach meanings to words through pictures. It is useful in verbal and nonverbal children. The goal is to help the child with spontaneous communication. It is helpful to have two trainers available in the initial part of the program when it is most intensive.

Facilitated communication (FC) involves a "facilitator" who assists the nonverbal child in pointing to letters or pressing keys on a keyboard to spell words for communication with others. This type of communication for autistic children is a topic of debate. It is thought that the "facilitator" has too much influence over the communication, and therefore, it is not the autistic child's thoughts or expressions. FC is not a recommended form of communication and is not supported by many autism experts or scientific research.

9. Which therapy is effective?

Unfortunately, there is little to no scientific data to support many of these therapies. This is most likely due to the fact that creating a study with autistic children is almost impossible. There are too many variables between children, from the severity of the disorder to their home environment, not to mention the ethics involved with creating a double blind, controlled study. It would be impossible to control and any data resulting from studies that are not controlled properly may be statistically inaccurate. However, despite the lack of scientific support for therapy, developmental experts agree that early intervention dramatically improves outcomes for young children with autism. There is no single specific therapy that works for all children. Therapy needs to be tailored to the child's own needs, based on his strengths, weaknesses, and interests. Therapy should be multidisciplinary, using occupational therapy, speech therapy, and behavioral therapy, as a basis. Your child's autism specialist should be able to guide you through your choices.

10. What is known about "alternative" therapies?

Unfortunately, for every parent searching for the "cure" for their child, there is an unethical person waiting with false promises for that cure. The Internet is fraught with scams that promise to cure autism. Below are some "therapies" that have no scientific support for the use in autistic children and should be avoided.

Auditory Integration Training (AIT)
Dr. Guy Berard, a French otolaryngologist, originally developed this therapy. AIT requires listening to processed music through headphones. This music is heard at various decibel levels, some which can be very loud. Treatment sessions may last 30 minutes a day for a year or more. The American Academy of Pediatrics does not support AIT and the medical device used is not approved by the Food and Drug Administration (FDA).

Secretin Therapy
Secretin is a natural hormone that is found in the small intestine. Extracted secretin from humans or pigs has been used as a diagnostic tool for intestinal and pancreatic disorders. Apparently, in 1998, there was a report of an autistic child who, while undergoing diagnostic tests, received secretin. Following the test, his autism symptoms dramatically improved. Since then, thousands of autistic children have received secretin despite the lack of safety and efficacy data. As recently as September 2002, Pharmacotherapy, a journal for pharmacists, published an analysis of all the studies relating secretin use and autism. The conclusion is that secretin does not improve symptoms of autism and should not be used.

Visual Therapy
It is thought that children with autism rely on their peripheral vision, have tunnel vision, or are hypersensitive to light. Visual therapy is intended to address these issues, however, there is no scientific data backing its effectiveness.

Dietary Modification
Some people theorize that food intolerance and allergies may worsen symptoms of autism. Specifically, yeast, gluten, and casein are the named culprits. There are no scientific studies that support the omission of these foods from an autistic child's diet.

Vitamin/Mineral Therapy
It is thought that supplemental B vitamins and magnesium reduce tantrums and other behavior issues in autistic children. Dimethlyglycine (DMG) is chemically similar to Vitamin B 15 and is available over-the-counter. Vitamin therapy has not been studied and is not recommended.

Other "Therapies"
The list of other interventions can go on for pages. A few examples that are not recommended or supported by any type of scientific research are; Delacto Method, Osteopathy/Craniosacral Therapy, Holding Therapy, The Squeeze Machine, Son-Rise Program, Higashi Therapy, and photostimulation. Be wary of therapies that make promises of a cure. There is no cure for autism.

11. How will I know if a therapy is working?

With all the various types of therapy available for parents to choose, it is important to pick the one most likely to improve the symptoms of autism. However, there are no guarantees that the choice will be effective. A few general guidelines should be followed. Try one therapy at a time and continue it for about 2 months before changing to another if no improvements are seen. However, if improvements are seen in the first week or two of a therapy then another intervention can be added. Remain objective and ask others who know your child if they notice any differences in behavior.

12. Are medication used in the treatment of autism?

Yes. The main groups of medications that are used to reduce the symptoms of autism are Neuroleptic Agents (Haldol, Risperidone), Anti-Depressant and Anti-Anxiety Agents (Prozac, Zoloft, Paxil), Stimulants (Ritalin, Dexedrine, Adderall), and Anti-Seizure Agents (Depakene, Neurontin, Lamictal). Not all children with autism need these powerful medications, and many can have serious side effects.

13. Where can I get more information about autism?

Be careful about information obtained from Internet sites, as much of the information is biased and not proven. Avoid the following Internet sites: Autism Research Institute at www.autism.com. Bernard Rimland, Ph.D., father of an autistic child, developed this site. The site consists of many of his editorials about autism. It is not based on scientific fact. Also, the Center for the Study of Autism at www.autism.org developed by Stephen Edelson, Ph.D., references the "work" of Bernard Rimland. This site encourages the use of diet, supplements and the "Hug Machine" for the treatment of autism.

Recommended Internet sites are those of the Autism Society of America at www.autism-society.org and Autism-PDD Resources Network at www.autism-pdd.net and the Autism Research Centre at www.autismresearchcenter.com. The Autism Society of America is a great starting point for information gathering. The Autism-PDD Resources Network has great links to state programs and aids in the development of an Individualized Education Plan (IEP) for use in the public schools. However, this site is not an advocate of TEACCH programs. The Autism Research Centre addresses autism from a scientific approach with research and journal publications.

As always, if you would like more information or you have questions about autism, please call your child's health care provider. Our offices have a comprehensive list of local neurologists, developmental pediatricians, occupational therapists, speech therapists, geneticists, and others specialists that are qualified to help you and your child. If there is concern, your child will be referred to these specialists for a complete evaluation. They may be able to guide you through the maze of reading materials and Internet sites that are available.