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Autism: Doors We Cannot See
Beulah C. Oldham
The Diagnostic and Statistical Manual of Mental Disorders-IV-TR (DSM-IV-TR) (2000) classifies autism as a Pervasive Developmental Disorders. In determining whether an individual is autistic, the child must meet the criteria for diagnoses as outlined in the DSM-IV-TR. In 1994, the American Psychiatric Association (Deudney, 2000) highlighted significant diagnostic criteria that children with autism lack varied spontaneous make-believe play or social modeling that is age appropriate. Other significant indicators in the diagnoses of autism consist of the following: 1) delays or abnormal functioning child’s communication skills, verbal and non-verbal, 2) failure to develop healthy and productive relationships, and 3) inappropriate behavior (DSM-IV-TR, 2000). Autism presents doors we cannot see due to the profound manifestations on the mind and body of individuals affected by the disorder.
Wickelgren (2005) maintains that were about 1.5 million Americans diagnosed with autism as of November 2005. Edwards (1991) reported that autism is more prevalent in boys, occurring three to four times more often in boys than in girls. In a review of recent autistic studies on autism, Fombonne (2005) found that the prevalence ratio of boys to girls remained steady, resulting in more males than females diagnosed with autism. The Center for Disease Control (CDC) approximates that in the United States there are 500,000 individuals from birth to 21 years of age with Autism Spectrum Disorder (Cuda, 2006). Cuda (2006) asserts that the CDC has reported a marked increase in recent years in the number of individuals diagnosed with autism. In regard to public special education program reports from 1994 to 2003, school systems have experienced a six-fold increase in the number of students diagnosed with autism (Cuda, 2006).
Recent studies suggest that early diagnosis and intervention can improve the quality of life for children with autism (Butter, Wynn, & Mulick, 2003). The writer has a personal interest in the ongoing research and cure for autism. Based on the fact the the writer has a nephew who is autistic and non-speaking. Family members and friends can be better advocates for children with autism if they are more familiar with the following areas: 1) etiology, 2) potential causative agents and their possible mechanisms of actions, 3) mental, emotional, and behavioral effects of the causative agent, 4) the assessment techniques and how these techniques are used, and 5) the treatment for autism.
The origin of autism’s remains a mystery to researchers and practitioners. The condition, according to the DSM-IV-TR (2000), must be diagnosed before the child reaches the age of three. The ethical nature of attempting to determine autism’s origin plays a significant role in diagnosis. Researchers, health care providers, psychologists, parents and others must thoroughly examine small children who have not developed the ability to communicate (Aman, 2005). The ethical issue of performing assessments on individuals who cannot communicate verbally has raised debate and concern (Findling, 2005). According to Cuda (2006), Dr. Robert Chessin believes that diagnoses are made much earlier than the age of three because individuals outside the immediate family members are able to observe the behavior of the child. Through these observations, researchers and practitioners can get involved at a critical point in the onset of autism which positions them closer to detecting what may have triggered this condition.
Potential Causative Agents and Their Possible Mechanism of Actions
Scientists have determined that there is no primary agent or factor that causes autism. The disorder has been linked to, but not limited to, diet, genes, vaccines and other factors. However, no particular element can be pinpointed as a definitive cause of the condition.
Certain elements in a child’s diet have been examined as potential links to autism. In 2002, Garvey examined the endogenous opiates, gluten and casein which are found in diary and wheat products. Garvey’s finding suggests that these opiates adhere to the central nervous systems of children, thus supporting the theory that these elements may contribute to or cause autism (as cited by Aman, 2005). Cuda (2006) noted that some parents were remove grain based products with gluten from their children’s diet in an attempt to avoid exacerbating the autistic condition. Although, Chessin (as cited by Cuba, 2006) stated that no scientific results have been evaluated, some parents have noticed that their child’s demeanor improved after grain-based products were eliminated from the diet.
In a December 19, 1999 article in Applied Genetics News, research was in process at the University of North Carolina at Chapel Hill to study the possibility that a gene causing autism attaches to chromosome 13 in individuals with the condition. The findings of this study could have a major impact on autism research (Gale Group, 2001). In an additional article by Szatmari (2003), the author reviewed studies on genome-linkages that also considered the connection with chromosome 13.
The importance of gene study continues today with the utilization of DNA testing. Such technology can determine the likelihood of an individual being a carrier of a gene with possible links to autism. Hagerman (2006) used DNA testing to study fragile X syndrome, which is associated with autism, among other conditions. In this study, the existence of a full mutation and/or a permutation gene led to a variety of gene related conditions, including autism. This study’s outcome suggests that more research is needed to reach an understanding of the fragile X field and its connection to autism.
Measles, Mumps, & Rubella
Additional research continues to be conducted to determine whether or not there is any validity in the theory that vaccines can cause autism. Of particular focus is the measles, mumps and rubella (MMR) vaccine, A 1998 British based-study (as cited by Cuda, 2006) postulated that the measles, mumps and rubella (MMR) vaccine may be a causative agent of autism. Though this theory was widespread, researchers admitted that after six years of misinformation, no true link between the MMR vaccine and autism could be determined. Despite the lack of evidence, researchers and health care providers believe that this theory has caused parents to avoid of having their children immunized, resulting in an unprecedented outbreak of mumps in the US (Center of Disease Control & Prevention, 2006; CNN.com, 2006).
Although the MMR connection has
proven, many researchers are looking to: 1) environmental factors
2003), 2) internal organs, such as the intestines (Jass, 2005) and 3)
exposure to medications prescribed during pregnancy (Parsell, 2004) as
potential causative factors of autism.
Research is not clear on the effects that mental, emotional and or behavioral causative agents have on autistic children. Evidence has shown children’s inability to share conclusively how these factors contribute to the whole causative agent; thereby contributing to the researchers daunting task of determining the effect on the body and mind.
The literature describes children with autism as ranging from highly functioning to severely mentally disable (Aman, 2005; Brown & Patel, 2005; Butter et al., 2003). The writers’ nephew, Tony is considered developmentally delayed with moderate to high functioning attributes. It is believed that he will more likely speak full sentences before he reaches his thirteenth birthday. Butter et al, (2003) reviewed the practice of the Early Intensive Behavioral Intervention (EIBI) utilized by the Comprehensive Autism Center in Columbus Children’s Hospital in Columbus, Ohio. The program presented some promising outcomes but, the reviewers also expressed their reservation with the program. Tony would benefit from a program such as this since he needs consistent structure and continuous intervention.
The emotional strain placed on families, particularly the parents, cannot be stressed enough (Aman, 2005). The parents blame themselves in trying to determine what they have done wrong to cause the autism; however, they continue a never-ending pursuit in finding a cure. Bower (1989) wrote an article that highlighted families’ involvement in several programs that evolved hope in some and despair in others. One particular program reviewed was Learning Experiences…An Alternative Program for Preschoolers and Parents (LEAP). The program was based on behavioral modification. The teachers utilized praise, rewards and other positive reinforcements; however, actions that may have been considered punitive were prohibited. The parents were included in the implementation of the activities so that appropriate behaviors taught in schools were reinforced at home. A downside of the program was obtaining consistency in the follow-through of parents and their long term commitment.
In Tony’s case, being exposed to more socialization opportunities made his future look less bleak. Prior to this, he was at times very unruly and had frequent outbursts of anger. Due to his inability to speak, he was not able to verbalize what he was feeling nor could his mother explain his behavior. Tony was then transferred to a school where teachers were better trained in working with children with autism and their need for behavioral control. Currently, Tony shows a great love for the Bible and can spell out the story of the Tower of Babel with Scrabble letters. No one knows if Tony understands what he is spelling out, but he spells out the story and his name religiously. He also has a fascination with Noah’s Ark and arranges animals two-by-two as if they are marching towards the ark. Now that he has started the new school, the family is able to control his outbursts.
From a behavioral perspective, Eric Schopler’s work (as cited by, Bower, 1989) conducted at the University of North Carolina at Chapel Hill with the Division Treatment and Education of Autistic and related Communication-Handicapped Children (TEACCH) proposes that the TEACCH program advocates a home teaching program whose foundation is based on activities and techniques structured from developmental assessment. The overarching goal is for the parents and child to learn techniques that will allow the child to remain in the home rather than in an institution. This program includes support groups and psychotherapy for the parents, if warranted. The first group consisted of 10 children who completed the program and had promising outcomes: several of the children were able to attend regular schools and matriculated to classes for the gifted; other children entered public school and the remaining were placed in classes for the autistic and mentally challenged. The children were not traumatized as a result of their involvement in the program and the parents played a predominate role in the program’s implementation and success.
Assessment Techniques and How Techniques Are Used
Methods used to identify individuals with autism primarily involve collecting information collected from parents and caregivers. Information such as the child’s developmental history and current behavior contributed to the diagnosis of the child during assessment (Rutter, LeCouteur, & Lord, n.d.). One assessment technique used in the diagnostic process is the Autism Diagnostic Interview-Revised (ADI-R). According to Rutter, et al. (n.d.) and Lord, Rutter, & LeCouteur (n.d.), the ADI-R has important applications in the diagnosis, treatment and educational planning for individuals with autism. The administration of the ADI-R is conducted by a trained clinical interviewer who interacts with the individual’s parents and/or caretaker. The parents or caretaker share the individual’s developmental history and current behavior (Rutter et al, n.d.). The ADI-R is used with individuals suspected of having autism, who have a mental age above 2 years, 0 months according to Rutter et al, (n.d.). The assessment has a number of functional domains: language, communication, reciprocal social interactions, and restricted, repetitive, and stereotyped behaviors and interests. The assessment also contains eight content areas: subject’s background, including family, education, previous diagnoses and medications; overview of the subject’s behavior; early development and developmental milestones; language acquisition and loss of language or other skills; current functioning in regards to language and communication; social development and play; interests and behaviors; and clinically relevant behaviors, such aggression, self-injury, and epileptic features. The assessment takes 1hr 30 min to 2 hr 30 min for the administration and scoring (Rutter et al, n.d.).
In our society, a common treatment path for autism is medication. The medication may keep the person with autism under control, but there are possible side effects that must be considered (Findling, 2005). Tony is currently on the medication path; however, it is believed that his body will eventually become immune to the medication and the health care provider will increase the dosage or changes the medication. Therefore, the medication routine is a short term fix that demands a long term solution. Dayan (1995) highlighted the increased interest in the use of Facilitated Communication Techniques (F/C) as an alternative to medication. This premise involves having a person serve as the autistic individual’s facilitator for communication; in essence, he or she acts as an interpreter for the autistic individual. The facilitator assists the autistic person by moving his or her arms, wrist or hand to allow the individual to use an augmentative device to communicate. Such communication devices include keyboards and picture boards. Tony currently utilizes uses a picture board without the aid of a facilitator. The advantage of having a facilitator is that an individual with high functioning capacity can comprehend the manipulation in relating to concepts.
The involvement of the facilitator with the F/C brings up ethical issues that psychologists are presently debating. The primary topic of concern is whether or not the facilitator exerts too much influence over the autistic individual. In essence, where does the facilitator end and the person with autism begin? Despite these concerns, advocates of F/C support the notion that this technique may be able to expand the autistic’s ability to communicate with the world.
Autism continues to be a disorder of mystery and unpredictability. Due to the increasing occurrence of children being diagnosed with this condition, scientists and other researchers must continue to work tirelessly to locate the causative agent or agents and a cure. If a cause or cure is not found, society must be prepared to take on the increasing burden of caring for individuals who enter over-taxed school systems, medical facilities, and, in some cases, the judicial system. In the case Tony and other autistics, society must continue to provide services and treatment; research must continue to be conducted to determine the definitive causative factors of autism and a universal cure will eventually open doors to the mind that we cannot currently see.
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