The Syndrome of Autism
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The Syndrome of Autism

We operate on the concept that more advanced individuals with autism, individuals with Asperger’s Syndrome and individuals with the label “pervasive developmental disorder- not otherwise specified” are in fact all part of the autistic spectrum, it is necessary to first define the syndrome of autism. Autism is a life-long developmental disability, which typically is present at birth. It is called a developmental disability because it impairs the person’s ability to develop at a normal rate and is most often diagnosed during the critical developmental years of early childhood, ages two to five years. Autism is referred to as a syndrome because it is a collection of symptoms, rather than a specific disease, which can be identified by medical tests. There is no single, specific phenomenon which causes autism to occur. Instead, researchers suggest that there are various factors which lead to autism in different people.

Researchers do know that biochemical and structural abnormalities exist in many individuals with autism. These abnormalities may impair the brain’s ability to process information, especially sensory information. The specific sensory mechanism affected may differ from individual to individual. In many, visual information may be processed well, while auditory or tactile information may be processed poorly. In others, several or all forms of sensory information are inadequately or differently processed. The processing difficulties make the world a confusing place for these people. The abnormalities mentioned above may also cause individuals with autism to experience movement disturbances. This may make their gait, posture or other physical aspects appear awkward or otherwise different. Those interested in more information on movement disturbances in autism are encouraged to read materials by Dr. Anne Donnellan on this subject. Even if your more advanced loved one does not appear to have a movement disturbance, Dr. Donnellan’s materials will make you stop and think about an entirely different view of the subject of autism and differently abled people in general. However, some individuals with autism spectrum disorders are unusually agile and have good coordination skills in both gross and fine motor areas.

There are many behavioral symptoms which are accepted as indicating the presence of autism. However, identifying these symptoms in an individual DOES NOT always result in a reliable diagnosis. A reliable diagnosis of any of the autism spectrum disorders* should be determined by a team of professionals. Please refer to the school section of this booklet for further information on diagnostic issues.

If possible, find professionals who have previous experience with ASD individuals. It is quite difficult for a professional who doesn’t see many “low incidence” challenges with autism, Asperger Syndrome or PDD to diagnose it. Even those who have diagnosed and/or treated many more severely challenged individuals with autism often have difficulty in accurately diagnosing the more advanced individual, as that person’s speech and ability to indicate a desire for or awareness of social interactions is so much more highly developed. When my daughter was diagnosed in 1975, she did not exhibit the rocking or flapping that so many more severely challenged individuals with autism exhibit. However, those diagnosing her had seen several other children like her, so they knew that they were still dealing with someone on the autistic spectrum.

Basically, the autism spectrum disorders of Autism, Asperger Syndrome and Pervasive Developmental Disorder/Not Otherwise Specified (PDD/NOS) encompass the following traits: (1) onset of noticeable symptoms during early childhood; (2) some type of difficulty in the production or use of verbal and/or nonverbal communication; (3) evidences of rigidity in thought processes; and (4) difficulty with reciprocal social interaction. Within those categories lie many variations of symptoms. However, those four areas are involved to some degree of different-than-typical ability in all individuals within the three DSM-IV categories of Autism, Asperger Syndrome and PDD/NOS. See The Appendix section at the back of this booklet for copies of the diagnostic criteria synopsis on each of these conditions.
 
*Hereafter, I will use the abbreviation “ASD” to refer to individuals within the Autism Spectrum of Disoders: Autism, Asperger’s Syndrome, Pervasive Developmental Disorders/Not Otherwise Specified and Autism Disintegrative Disorder.

Two aspects of these conditions are important to remember. First, the conditions occur before or shortly after birth although symptoms may not become evident until early childhood or even later in the case of extremely advanced individuals. Therefore, they are not caused by poor parenting. Second, they are not curable. We all hope that someday medical research will give us more answers about cause that could lead to a cure, but so far the facts that are coming to light indicate that there may never be a cure. Symptoms can be greatly ameliorated, however. Although many have successfully adapted to meet the demands of their environment, I know of no properly documented cases in which an individual having one of the “ASD” diagnoses was completely cured. Therefore, parents and professionals must acknowledge that parents don’t cause these disorders and that these are life-long conditions which will not disappear.

We must be careful in expressing our hopes for a cure because this hope is interpreted quite negatively by a lot of people with these conditions, to which I will refer throughout the remainder of this booklet as ASD individuals or more advanced individuals. They feel that their condition is an intrinsic aspect of their personalities – who they are. When they hear us talk of searching for a cure, they think we are trying to annihilate their personalities. I know I speak for all who care about people with ASD challenges when I say that this is NOT our goal. We want to alleviate their suffering and make coping with everyday life easier for them.

Mary Anne Coppola, the mother of a young man diagnosed with autism expressed this paradox quite well: “Some days my greatest wish is that autism were to disappear from my son’s life forever, and yet Brian says that autism is who is he is, and that is just fine with him. Erasing it would be like losing his arm or his eye.”

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