Challenges of Autism Disorder - Research Paper Example

Autism Autism has always been a challenging disorder. There are difficulties with defining, identifying and diagnosing autism. The definition is an umbrella term to incorporate the many symptoms of autism that overlap with other pervasive developmental disorders. The prevalence of autism has been assessed in various ways in different parts of the world. Reasons for the rise in the prevalence are included. The controversy over the suggested link between immunizations and the occurrence of autism is examined. Autism is a behavioral disorder which has been a challenge to understand, diagnose and treat for many years. There is still no definite answer concerning the cause of autism. It affects the entire family of the child living with the condition. Siblings have to also learn to cope with having a brother or sister who is autistic. Because of the lack of understanding of the disorder, especially the cause, many parents are in fear of doing anything that may lead to the child having any of the symptoms of autism. Since the causes were not definite parents, especially the mothers, were originally made to feel that it was the result of something they had done wrong, perhaps during the pregnancy. Understanding the etiology of autism will help to relieve the blame that parents may feel. The diagnosis was also complicated by the fact that although parents may see signs of autistic behavior during the first year of the child’s life, the diagnosis is usually not made until the child is 30 months. Autism has symptoms that overlap with other developmental disorders particularly affecting the social development of the child. This overlap complicates the diagnosis of autism especially since there are limited measures for identifying symptoms early. For some the use of the term Autism Spectrum Disorder is used to cover the range of symptoms from the severe infantile autism to the milder Asperger’s Syndrome. This complication has made it difficult to accurately identify the disorder in some children and therefore to establish reliable statistics of prevalence of the disorder. A major controversy surrounding the incidence of autism has been the suggested link between immunizations against childhood diseases, especially Mumps, Measles and Rubella, and the possibility of developing autism. Several parents have therefore opted to refrain from immunizing their children and this has caused problems in schools where immunization is a requirement for entry into the school. It is important therefore to understand as much as we can about this disorder and whether there is in fact a connection between vaccination and the disorder. The purpose of this paper is to literature for an understanding of the prevalence of autism- how the occurrence is determined and the reasons suggested for the rise in prevalence of autism. A secondary purpose is to explore the research on the relationship between the Autism Spectrum Disorder spectrum and immunization. Autism is a behavioral disorder which is a central nervous system disease. Ozana et al (2003) call it an umbrella term for a wide spectrum of disorders which is sometimes referred to as the Autism Spectrum Disorder (ASD). The term Pervasive Developmental Disorder is also sometimes used. The disorder can range from the very mild form of Asperger’s Syndrome to the severe infantile form. Some of the characteristics described by Ozana et al include back and forth meaningless body movements, no attention being paid to conversations, ritualistic and obsessive behaviors and violent reactions to change. Phetnasuwan et al (2009) expand the description and describe autistic spectrum disorders as a group of five closely related neurobiological disorders, including Autistic Disorder, Asperger’s Disorder, pervasive Developmental Disorder Not Otherwise Specified, Childhood Disintegrative Disorder and Rhett’s Disorder. They describe three key areas of developmental problems in children with autistic disorder- impairment in social interactions, severe delays or lack of language and communication skills, and repetitive and stereotyped patterns of behavior. They point out that autism spectrum disorders are among the most “disabling and mystifying of all childhood developmental disorders because these individuals have an atypical pattern of development that affects multiple areas of functioning” (p. 206). This highlights the importance of understanding this disorder. The causes of autism have been very difficult to determine. There have been genetic suggestions with some believing that as many as 15 genes may be involved. According to Ozana et al (2003) the likelihood of subsequent siblings having autism is 9% in dizygotic twins and 60% in monozygotic twins, yet only 3-7% in non-twin siblings. Some researchers believe that autism results from a brain functioning abnormality of unknown origin. Another suggestion is that congenital rubella or tuberous sclerosis might be associated with autism, but that link has not been very strong. (Cade and Tidwell (2001). Children with autism have also demonstrated other symptoms such as mental retardation, seizures and attention deficit which suggest other areas of the brain might be affected. Berg (2009) also points to a genetic component but also suggests that the increase in prevalence led researchers to look at environmental factors. A number of environmental exposures have been suggested as triggers or exacerbations of autistic spectrum disorders. These include heavy metals such as lead, mercury, cadmium and arsenic; flame retardants, insecticides, compounds used in vinyl and cosmetics, even some household cleaning products that could affect the immune system. Exposure in utero to such chemicals as thalidomide has also been implicated in the occurrence of autism. However Berg suggests a combination of genetic and environmental factors. Galintat et al (2005) also support a genetic component and believe that it is triggered by environmental factors such as toxicity from compounds in the environment such as mercury and insecticides. The prevalence and increasing rate of autism has been of concern for a long time. Different authors and researchers have quoted prevalence rates in varying forms and suggested a variety of reasons for the increase in prevalence over the years. Ozana et al (2003) report that in 1986 there was a chance of 1 in 5000 births resulting in autism, this increased to 1 in 1,000 in 1998 and was up to 1 in 250 births by 2000. Some of the suggested causes for this increase included the organophosphate rise in agriculture which changed dietary habits and led to changes in people’s intestinal flora and therefore the toxins that they produced. The plastic industry was also blamed since the manufacture of plastics is thought to involve toxic catalyzers. Other drugs and heavy metals in the environment are also blamed. The Center for Disease Control and Prevention reported a figure of 6.6 per 1000 in 2002, or approximately 1 in 150 children having autism. (Phetnasuwan et al, 2009). These numbers are thought to be rising internationally. They also believe that there are a number of people who are not being identified, therefore the figure could be higher and that the broadening of the diagnostic criteria could be one reason for the increased reports of incidence worldwide. Waterhouse (2008) explains that the changes in the DSM-III to DSM-III-R broadened the concept of autism. However the changes from DSM-III-R to DSM-IV brought the definition of autism back to a narrower one. Gernsbacher et al (2005) further explained that in 1980 the DSM-III required a satisfying of six mandatory criteria for a diagnosis of autism, whereas the more recent DSM-IV in 1994 offered sixteen optional criteria and only half had to be satisfied. The earlier DSM-III also only had two diagnostic categories (infantile autism and childhood onset pervasive developmental disorder) but the DSM-IV includes the five neurobiological disorders. Before the 1980s autism was thought to be rare, according to the Morbidity and Mortality Report of the Center for Disease Control (2006). At that time the estimate was 1 in every 2000 children but this has now risen to 6 or 7 in every 1000. It is thought that some studies have documented even higher prevalence estimates in other countries such as japan, Sweden and the UK and Norway which has reported a figure of 2.7% of the children in one study in Norway. The Center believes that widening of the criteria to include milder forms of the disorder has been a factor influencing the increase of the prevalence. It could also be that the earlier identification is causing more children to be included in the statistics for prevalence now. Waterhouse (2008) offers a perspective on the prevalence. She also quotes figures from the California study of children in the 3- 5 years age group- 0.6 per 1000 in 1995 that rose to 4.1 in 1000 in 2007. The figures from Canada also show this increase from 1.2 in 1000 to 4.3 in 1000. In the Montreal area there was a corresponding increase by 10%. From 1994 to 2003 in the US states, except Massachusetts and Iowa there was an increase from 0.6 in 1000 to 3.1 in 1000. She presents several reasons postulated by various researchers for this increase. Taking folate while pregnant was implicated. It was thought that the folate supplements allowed infants to survive but with a genetic polymorphism that caused abnormal neurodevelopment that caused autism. Another reason was chemical changes in the body that disrupts the gut-blood-brain barrier and so allows toxins to enter the brain from the intestine. The increase in watching cable TV in California and Pennsylvania was even suggested as a cause. The fourth cause was the vaccine theory. This author reports a personal communication with sociologist G. Eyal in which he described the growth of the autism prevalence in three stages. In the 1970s individuals with mental retardation were deinstitutionalized and because many of the fit the DSM-III R of diagnostic criteria for autism, this increased the prevalence in the population. Later in the early 1990s autism was added to the Individual with Disabilities in Education Act (IDEA) and so now there was a more concrete reason for getting a diagnosis. And later in the 1990s to the present time there has been increasing parent awareness and activism which has resulted in further increase in the prevalence. The incidence of autism in the school system has also been studied. Volker and Lopata (2008) quote a figure of 10 – 16 cases per 10,000 people, but if the broader pervasive developmental disorders are taken into consideration this figure could be as much as 60 per 10,000. They state that “the number of students served with the IDEA has risen sharply from 15, 580 in 1992 to 192,643 in 2005 according to the US Department of Education” (p.258). They suggest that this rise could be because of increasing awareness of the broader range of conditions of this disorder. Galinat et al (2005) had previously noted an increase in the number of students with disabilities, including autism entering regular educational settings. They noted a growth in the rate of autism of 10 – 17% per year. In 1991, for example, 5, 415 students with autism enrolled in special education programs. By 2001 there were more than 78, 749 students classified as autistic in special education, an increase of more than 1,000% in ten years. The occurrence of autism has been compared to other disabilities in children. Galinat et al (2005) state that “autism is five times more common than Downs Syndrome and three times more common than Type 1 Diabetes” (p.208). Maino et al (2009) describe the rate as lower than for intellectual disability but higher than for cerebral palsy, deafness and severe visual impairment. The prevalence of autism is not only considered a problem in North America. McConkey et al (2009) reported figures form South London where rates from a sample of nearly 60,000 children, 9-10 years old, 116 per 10,000 were autistic. Even there the debate is still whether the rise in prevalence is a result of better identification of autism, or a broader diagnostic criteria or that doctors are more willing to make the diagnosis. Fonbonne (2005) investigated the claims that in the UK there was an estimated 518,500 including children and adults with autism and that I out of every 100 would suffer from an autistic spectrum disorder. These figures he claimed were arrived at using three different kinds of ratings for autistic spectrum disorders- one was for Kanner syndrome and yielded a result of 5 in 10,000, the second was for other spectrum disorders and yielded a result of 15 in 10,000 and the third was for Asperger’s Syndrome and other spectrum disorders among people with normal intelligence and that yielded a result of 71 in 10,000. Fonbonne goes on to explain that there were more than twenty epidemiological surveys done in various countries in the past thirty years. With this large number of surveys there must be methodological differences in the studies and this can lead to the wide range of estimated prevalence rates. The median of all the rates across all studies was an acceptable general 4.8 in 10,000 and 5.0 in 10,000 for school-age children. Although he accepts a rate of 5 in 10,000 as an acceptable average, he goes on to point out that a large group of children suffer from conditions which have overlapping features with autism, for example Pervasive Developmental Disorders and Asperger’s Syndrome. He therefore suggests that in the UK around 6,500 children under the age of eighteen can be classified with autism, and another 13,000 with other forms of PDD. For adults the figures would be 22,000 and 44,000 respectively. Scahill and Bearss (2009) point out an important issue in determining prevalence. One of the methods of assessing incidence is taking a tally from all the known cases in clinics, private practices, hospitals and schools. However there are limitations to this method since it will not take into account children who do not attend any of these places for a diagnosis. Another limitation was the inequity in access to treatment and this led to an earlier suggestion that higher socioeconomic status was a risk factor in autism since this was the group that generally accessed these facilities. It is now known that autism knows no bounds of race, ethnicity, socioeconomic status nor gender. Determining the real cause of autism may be the key to settling the debate about whether or not vaccinations contribute to the development of autism in children. The American Academy of Pediatrics states that the autism is thought more frequently as genetically based. They have indicated that abnormalities in brain structures have been identified in people with autism and these abnormalities have developed in the first few weeks of gestation. There is question about whether this increase is due to an actual rise in the incidence, or a rise in the diagnosis. Perhaps more people recognizing the symptoms in their children and coming forth. Some may even question whether it is an improvement in the recognition of the symptoms, or a change in diagnosis from what would have earlier been described as mental retardation. Others may suggest that parents are coming forward with their children as better social and educational services are offered for autistic children. One of the questions that still remain largely unanswered and needs further research lies in the fact that more boys are diagnosed with autism than girls. Whatever the reason, the rise in incidence indicates the need for continuing research and answers to the many questions. Immunization is one of the factors that have been implicated in the incidence of autism. The debate about whether immunizations or preventative shots caused autism and other pervasive developmental disorders has been going on since the 1990s. a group of British researchers started the controversy when they claimed that children who had been vaccinated for measles developed intestinal problems. Since these children also had autism, these researchers suggested a link between the vaccination for measles, mumps and rubella (MMR vaccination) and autism. Although these researchers had to retract this claim years later due to criticisms of the study, parents were left with the fear of vaccinating children. In 1998 Andrew Wakefield discussed a study by the British researchers in a paper in the prestigious journal Lancet (Taylor, 2006). This paper was criticized by many people. The paper described twelve children who suffered from abdominal disorders. These children had also indicated a loss of certain skills and on investigation and finding that these children had been immunized before Wakefield made the link between the immunization and the occurrence of autism, even though the children had been immunized nine years earlier. However in four of the cases the behavior problems occurred before the bowel symptoms and so refuted his theory that the bowel dysfunction was caused by the MMR and in turn caused the autism. However Taylor points out that there are a number of other factors that could have contributed to the behavior disorders exhibited by these children and that it was almost impossible to confirm that it was in fact the immunization that caused the behavior disorders that resembled autism. The American Academy of Pediatrics (n.d.) also points out a number of flaws in Wakefield’s study, including that the sample was small, the vaccinations had been given as many as nine years earlier, data was not objective, and there was no control group. The Academy also reports that Wakefield’s later paper in 2002 was also flawed. There was no information about a control group matching the experimental group of autistic children. This report never-the-less started the controversy about vaccinations and raised the fear of parents to vaccinate their children. After the Wakefield paper the CDC and the National Institute of Health convened a panel of experts to examine three vaccine safety issues, including the hypothesis that there was a link between the MMR vaccine and autism. The committee carried out an extensive review of the scientific and medical literature and rejected the hypothesis. Many studies followed. One study for example compared the rates of autism in England between boys born in 1988 when MMR vaccine was introduced and those born in 1993. The study found that while the rate of autism diagnosis was increasing four fold, the rate of MMR immunization was fairly constant over the same time period. In another study in Denmark in over a half a million children there was no difference in the risk of autism between MMR vaccinated children and unvaccinated children (Miller and Reynolds, 2009). Around the same time the California Department of Developmental Services indicated in a report that there was a rise in autism over the years which was later described as an epidemic. (Weber, 2008). This increased the belief by some parents of the connection between the vaccines and autism, although there was still no scientific proof. As Weber states “A report in 2004 by the Institute of Medicine concluded that there is no association between autism and MMR vaccine, or between autism and thimerosal” She further states that, “there is no conclusive evidence that any vaccine or vaccine additive increases the risk of developing autism” (p.291) The major chemical in vaccinations thought to cause behavior disorders, especially autism in children is thimerosal. Since the MMR vaccination is a multidose vaccine which can present potential threats of contamination to children, Thimerosal was therefore added in low doses to vaccines to reduce infections. Thimerosal is a mecury-based preservative and mercury had been shown to produce adverse effects in the body. Methymercury was causing neurological problems in people when absorbed in high does. However thimerosal contains ethylmercury and not methylmecury. There were no existing guidelines for the amount of ethylmercury that is safe for the human body and so the guidelines for methylmercury were used on the assumption, which was false, that the body reacts to both in the same way. The confusion arose therefore that the ethylmercury would be harmful to the body in the same way as methylmercury. However, the amount of ethylmercury used in the vaccines has been shown to be within the safe levels for the human body. It has been difficult to prove or disprove this thesis that vaccinations cause increased incidences of autism in children. Researchers have looked at the issue from many different angles since there are many different factors involved. Nelson and Bauman (2003) looked for similarities in children with mercury poisoning and autism. They first looked for commonalities in motor manifestations. The only common motor manifestation they found was in repetitive behavior such as rocking or flapping. Other signs such as hypertension, skin eruptions usually evident in mercury toxicity were not present in autism. They also looked at the timing of the onset of autism to determine whether it coincides with the immunizations. They explain that it is difficult to establish the actual time of onset of autism and to make a link with the environmental effects on onset. They concluded that the evidence to determine the role of vaccines in autism is inconclusive. Thirdly, they questioned the existence of mercury levels in autistic children. No evidence was provided in the literature nor in their own study to show significant amounts of mercury in the hair, urine, or blood of autistic children. As these authors point out mercury has been in the environment for many years before this onset of autism. For example, in the first half of the 20th century medicines containing mercury were used to treat various diseases and none of the children treated were diagnosed as behavioral symptoms of autism. They also pointed out that that reducing levels of mercury in the environment have not resulted in reduced incidence of autism. They referred to a study done in Japan during and after a toxic outbreak in the 1950s and the 1960s. The results showed on the contrary, higher rates of autism in children born between 1966 and 1974 than in the periods just after the outbreaks. Parker et al (2008) reviewed twelve published studies from Denmark, Sweden, UK and US. They did a thorough literature search and analyzed all research studies published between 1996 and 2004 that evaluated an association between vaccines and autism spectrum disorders and neuro-developmental disorders. There was information that stated that trace amounts are present in some vaccines but that the amounts were too small to be consequential. In order to examine the claim by The Immunization Safety Review Committee of the Institute of Medicine in 2001 that there was not sufficient evidence to accept or reject a causal relationship between exposure to thimerosal and NDDs more fully the authors analyzed the twelve studies. They found that the studies supporting an association between thimerosal and autism were done by the same authors and used overlapping data and some of the methodology seemed flawed. Whereas the studies that did not show an association were properly conducted and the data appropriately analyzed. They were not satisfied that the studies that claimed an association between thimerosal and autism were conclusive. They also pointed out that the elimination of thimerosal exposure in vaccines was eliminated in 1992 in Denmark and Sweden and yet the rates of autism continued to rise. The Public Health Agency of Canada continues to update their information that supports the hypothesis that thimerosal does not cause autism. In their paper, Thimerosal –updated statement (Law and Primeau, 2007) reports by the Immunization Safety Review Committee of the US Institute of Medicine (IOM) in 2001 and 2004 were used as evidence by the Canadian Health Agency in their conclusion that it was not necessary to completely remove thimerosal from vaccines. In 2001 the IOM concluded that "the evidence is inadequate to accept or reject a causal relationship between thimerosal exposures from childhood vaccines and neuro-developmental disorders” (p.7). They also believed that “the hypothesis that thimerosal exposure through the recommended childhood immunization schedule [in the US] has caused neuro-developmental disorders is not supported by clinical or experimental evidence" (p.7). And even more recently in 2004, after examining evidence from studies from Denmark, Great Britain, Sweden and the US, they again concluded that the evidence rejects any relationship between thimerosal and autism. The Canadian Health Agency also provided data from a study in Quebec of 180 children with Pervasive Developmental Disorder to support the lack of association between thimerosal exposure and pervasive developmental disorders (PDDs). Again there was no correlation found between ethylmercury exposure and the rising prevalence of PDD. There latest update was in December, 2005 refuting any claim of a connection between thimerosal and autism and other PDDs. A similar study was carried out in California between 1989 and 2003. Records of children receiving special education services were examined. The incidence of autism was compared over periods of low, high and no exposure to thimerosal. The study showed a rise in autism prevalence even through the period when thimerosal was banned. A correlation between rise in autism and exposure to thimerosal could not be established. (Scahill and Bearss 52). The controversy continued despite so much evidence against it. Researchers at Cambridge Universitys Autism Research Centre, who examined 12,000 children at primary schools in Cambridgeshire between 2001 and 2004 claim that the incidence of autism is at 1 in 58 children, an increase from 1 in 100 children. Even the research team is in disagreement as two suggest a link with the MMR vaccine, while the other members of the team reject the idea. (News-Medical). The two who suggest a link do admit that it could only be a factor in a small sample of children. Other factors have been cited as possible contributors, such as environment, hormones in the womb and genetics. The American Academy of Pediatrics (n.d.) presents an important fact to help to convince parents that they should not be afraid to vaccinate their children. According to them there is increasing evidence that autism is determined while the baby is still in the womb. Therefore vaccination cannot be the cause. The difficulty is with the fact that despite the early determination of autism it is only identified at about age one and half years. And this is just about the time that the vaccination MMR is administered. Thus leading parents and others to make the link. Despite the amount of research and evidence put forward since then to show the lack of correlation between vaccination and incidence of autism, uncertainty remains among some of the dangers of vaccination. There has been a lot of research and information put forward since then to allay these fears. The conclusion of all the research done is that there is no empirical evidence to show a direct link between vaccine and autism. On the contrary there are more reports providing sufficient proof that vaccines are safe. It is understandable however that parents will remain skeptical and concerned. Research is still needed in all the areas for the complete understanding of this challenging disorder. References American Academy of Pediatrics. n.d. What Parents Should Know About Measles- Mumps-Rubella (MMR) Vaccine and Autism. Retrieved April 14, 2010. Read More