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L.Srikumar Pai
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What is Autism ?

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Autism is a complex neurobiological disorder that interferes with normal development in language, social interaction and

behavior. The technical term, autism spectrum disorders (ASDs), refers to a group of developmental disorders that are usually first diagnosed in early childhood and include: autistic disorder, pervasive developmental disorder not otherwise specified (PDD-NOS) and Aspergerís syndrome. It also includes two rare disorders, Rett disorder and childhood disintegrative disorder.

Though most children with autism look perfectly normal, they will often avoid eye contact and lack interest in or regard for faces. Their thinking and learning abilities vary from gifted to severely challenged. Associated problems include hyperactivity, self-injurious behavior, sleeplessness, eating disorders and gastrointestinal problems. Stability and consistently administered therapeutic interventions are critical to the child's and family's well-being.

The Autism Epidemic:

The incidence of ASDs has exploded in the past decade with the latest studies revealing that approximately 1 in 110 children are affected by an ASD (Centers for Disease Control and Prevention, 2009), including 1 in 70 boys. In the early 1990s, the incidence of autism was 1 in 10,000. This alarming rise has now given autism the undesired ranking as the most prevalent childhood developmental disorder in the U.S. While there is no known cause, and worse yet, no cure, we do know that autism is likely the product of genetics and environmental factors

  1. What is the definition of autism spectrum disorders?
    The term "autism spectrum disorders (ASDs)" refers to a wide range of developmental disorders and includes five classifications. According to the National Institute of Mental Health, these disorders are usually first diagnosed in early childhood and range from a severe form, called autistic disorder, through pervasive development disorder not otherwise specified (PDD-NOS), to a much milder form, Asperger's syndrome. They also include two rare disorders, Rett syndrome and childhood disintegrative disorder.

    Each of these disorders has a specific set of characteristics used as criteria for diagnosis in the Diagnostic and Statistical Manual (DSM IV) of the American Psychiatric Association. It is important to understand that individuals can share common characteristics on the spectrum, yet ASD is unique to the individual and will be different for every person.
  2. What causes autism spectrum disorders?
    While autism research has made great strides in the past decade, the causes of autism spectrum disorders (ASDs) remain unknown. Family and twin studies lend support to a genetic etiology, and other studies indicate neurobiological differences in the anatomy and function of the brain in individuals with autism. The Translational Genomics Research Institute (TGen) and SARRC are currently working to find the cause or causes of ASDs.
  3. Is there a cure for autism spectrum disorders?
    Today, there is no cure for ASDs. It is not possible to "outgrow" an ASD, but it is possible to "overcome" many symptoms of an ASD or at the very least, gain control of difficult behaviors. With time and appropriate interventions, individuals can learn to compensate for deficits with new strengths and skills. There has been, and continues to be, much progress in the treatment of ASDs.

    At this point in time, no one can predict what a child with autism will be like as an adult. However, most experts in the field of autism research and treatment agree that early intervention is essential and critical.
  4. Are there disorders that can accompany ASD?
    It is possible to be diagnosed with an ASD and also be diagnosed with other disorders, including attention deficit hyperactivity disorder (ADHD), learning disabilities, visual and hearing impairments, obsessive compulsive disorder (OCD), anxiety disorders, mental retardation and others. Any of these disorders can vary from mild to severe.

    It is also possible for some people to be diagnosed with an ASD and not have mental retardation or other disorders.

    A few other disorders that sometimes accompany autism include:

    • Seizures:
      About one-third of the children with ASDs develop seizures in early childhood or adolescence. Researchers are trying to learn if there is any significance to the time of onset, since the seizures often first appear when certain neurotransmitters become inactive. Since seizures range from brief blackouts to full-blown body convulsions, an electroencephalogram (EEG) can help confirm their presence. Fortunately, in most cases, seizures can be controlled with medication.
    • Fragile X:
      Found in about 3 percent of people with an ASD, mostly males, this inherited disorder is named for a defective piece of the X-chromosome that appears pinched and fragile when seen under a microscope. People who inherit this faulty bit of genetic code have many of the same symptoms as an ASD along with unusual physical features that are not typical of ASDs.
    • Tuberous Sclerosis:
      Research shows that a relationship exists between ASDs and Tuberous Sclerosis, which is a genetic condition that causes abnormal tissue growth in the brain and problems in other organs. Although Tuberous Sclerosis is a rare disorder, occurring in less than one in 10,000 births, about a fourth of those affected are also diagnosed with an ASD. Scientists are exploring genetic conditions such as Fragile X and Tuberous Sclerosis to see why they so often coincide with autism. Understanding exactly how these conditions disrupt normal brain development may provide insights to the biological and genetic mechanisms of ASDs.
  5. What should I do about problematic behaviors?
    While it is impossible to provide a single answer to this question that will apply to every child and every family, there are some guidelines that parents and others can follow in order to handle situations safely and effectively. There may be many different functions, or reasons, some individuals with ASD's display problematic behaviors. Due to difficulties with communication, an individual with autism may become easily frustrated if they are unable to communicate with others or have trouble understanding what to do.

    When problematic behavior occurs, it is possible to find the reason or cause for the behavior. This can be done through establishing an understanding of behavior patterns. There is much to be learned by paying close attention to what happens immediately before and after a specific behavior occurs. Once the function, or cause of the behavior, is understood it is possible to determine an appropriate intervention plan to change or replace the problem behavior with a more appropriate alternative.

    Teaching skills that will reduce frustration, increase communication ability and facilitate the replacement of inappropriate behavior with appropriate alternatives can be highly effective. However, it is important to refrain from trying to teach these skills when an individual is upset or engaged in a tantrum. A proactive approach will help minimize or overcome the behavior. Some proactive and preventative steps to take can include:

    • Provide many opportunities for the individual to make choices (e.g., Do you want to use crayon or marker?)
    • Provide lots of positive reinforcement and verbal praise when the individual is not acting out
    • Consider what motivates and makes sense to the individual and use these objects or activities to reward good behavior
    • Provide structure, routine and predictability through the use of routines, schedules and other appropriate supports when dealing with transitions or difficult situations
  6. Can adults with ASD live independent lives?
    Individuals with ASDs exhibit a wide range of variation when it comes to their level of functioning and capability. Every person with an ASD can learn. Some will live productive lives with varying levels of support and others will live independently, marry, work and raise a family. By teaching individuals with ASDs necessary life skills from a young age, these individuals have a greater potential to lead largely successful lives.
  7. How do I know what to do to help my child?
    Because ASDs are unique to the individual, what works for one person may not for another. Understanding the process for gathering good information and how to use that information in creating a program with appropriate support and services is always the best way to get started.

    Autism experts commonly agree that intervention programs supported by solid research are an important indicator of effectiveness. With that said, research also suggests that because ASDs are unique to the individual, the results of any particular study may be impacted by these individual differences. Some approaches are controversial and can be surrounded by passionate supporters. It is important to keep your focus on the defining characteristics of the individual, what is regarded as best practice and supported by research and autism professionals, and the learning abilities and disabilities of the individual.

    A comprehensive evaluation can identify strengths and challenges. This information is useful in creating a comprehensive intervention program that addresses the strengths and challenges of the individual. A comprehensive program should include supports and services that complement each other, are realistic for implementation, and are accessible to the individual in the home, community and school setting. Always work with skilled and qualified professionals to correctly implement the program and to monitor and change the program as the individual changes.

    Varying treatment approaches exist with a wide range of features available. There are programs with fees covered by insurance, state and local agencies, or private pay.

    SARRC recommends you consult your doctor when considering interventions that may put the health of an individual at risk.
  8. What medications are available?
    No medication can correct the brain structures or impaired nerve connections that seem to underlie ASDs. Scientists have found, however, that medicines developed to treat other disorders with similar symptoms are sometimes effective in treating the symptoms and behaviors that make it hard for individuals with autism to function at home, school or work. The idea of using medication as part of treatment is something that should be discussed in great detail with your child's doctor.
  9. How do we participate in research projects at SARRC?
    SARRC has developed a research questionnaire that we encourage all parents to complete. Information from the questionnaire is entered into our computer database, and assessments help guide our research and identify subjects for studies. We urge parents to complete the questionnaire for their typical children as well and recruit neighbors and friends (who do not have ASDs) to complete the forms. This provides SARRC with an essential control group for comparative evaluations and benchmarks.

( Courtesy: Southwest Autism Research & Resource Center )


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