Autism and the Stigma surrounding it

Autism and the Stigma surrounding it

Abstract

The following research delves into and studies Autism and the Stigma surrounding it; The causes, risk factors, types, prevention, treatment, savant syndrome, and the stigma usrrounding it. A questionnaire was sent to Freshmen, Sophomore, Junior, and Senior students of Dar Jana International School to analyze the severity of the Stigma. After being analyzed, organized, and separated, the data was used to find correlations between the literature review and the analysis and within the data itself. The results show that although the Stigma is now as widespread and severe as it once was, but is more prevalent in the younger of the two focus groups, the sophomores, and freshmen most likely due to lack of education or unawareness.

Introduction

Autism spectrum disorder (ASD) is a developmental disorder that affects the communicational and behavioral aspect of one’s life. Although autism can be diagnosed at any age, it is said to be a “developmental disorder” because symptoms generally appear in the first two years of life (Autism Society of America, 2014). Autism is characterized by many traits including but not limited to a lacking of ability to communicate and interact with others, restrictive or repetitive behaviors, hypersensitivity, and ability empathizing with others (National Institute of Mental Health, 2018).

1 in 59 children is afflicted (Autism Speaks, n.d.), but for some reason beyond common understanding, Autism is never represented in the media, and when it is the representation is one that shows autism in a negative light. Because people with Autism are incapable of speaking out for themselves, the average person is unable to view autistic people as anything other the media representation. Because the general public is very misinformed about the true nature of autism, they are going to the most ignorant of extremes. In 2018, the number of people who have joined the anti-vaccination movement is appalling, and the reason they joined this movement is that a study from the early 1990s showed a correlation between the mumps, measles, and rubella vaccines and autism. Though this correlation was found to be fraudulent, people continue to believe it. As a result, some parents have stopped vaccinating their young children. Because the negligent parents would rather their child die of Smallpox rather than have autism, the number of reported cases of previously extinct diseases have begun to rise. This catastrophic event is a direct result of the heinous lack of representation, in the media.

As unfortunate as it is to say, the stigma surrounding all mental disorders- more specifically

Autism- is severe. People with Autistic children will trap them in their homes and raise them in seclusion. They view those with ASD as a burden or punishment bestowed upon them by God. The stigmatization of Autism in the western world is slowly but surely beginning to fade, but the middle east remains stagnant. We are where we have been for the past few decades. So we ask ourselves, how severe is the taboo surrounding Autism in the middle east? But to understand that we must understand What is Autism?

Literature Review

Physiological Causes and Risk Factors

One of the causes of Autism can generally be boiled down to genetic predisposition; with certainty, geneticists can say that some genes are inherited and may increase one’s chance of bearing autism stricken children (National Health Society, 2016). In most cases, families with a history of Autism can expect any new children to have an exponentially higher chance of the disorder. It is even expected that twins, regardless of whether they are identical or fraternal, will both have autism (Zeliadt, 2016). Another factor that can increase one’s disposition to developing autism as a fetus is other disorders and diseases. Per a 2016 National Health Society study, a handful of diseases are linked to Autism such as Muscular Dystrophy, Down’s Syndrome, Cerebral Palsy, Neurofibromatosis, and Fragile Syndrome X.

A multitude of risk factors must also be thought about when calculating disposition. The most common and prominent risk factors are advanced parental age at the time of conception, prenatal exposure to air pollution and pesticides, and maternal obesity or diabetes, (National Institute of Environmental Health, 2018). Another risk factor is toxic exposure (Autism Speaks, n.d.). Not much is known in that regard, but what researchers can say without hesitation is exposure to toxic environments, can alter one’s genetic code and generally lead children to have deformations or disabilities. Drug use and drinking also extrapolate one’s risk of bearing Autistic children (Gallagher, McCarthy, Ryan, & Kashan, 2018).

Some believe that the gender of a child will affect the likelihood of having the disorder because a study found that for every girl diagnosed with autism there are about 4.2 boys with autism (Deweerdt, 2017). The common conclusion most people would come to is that males are more

likely to be born with autism. Although that is not the truth. The reason for the large margin between the two sexes is the fact that females are often misdiagnosed or go undiagnosed because Autism may present itself differently according to gender. Females do not exhibit the same level of hyper-focused interests as males and do not engage in repetitive behaviors as males tend to. Females are additionally more likely to mask their mental imbalance by mirroring neurotypical peers. Thus, Autism might be increasingly hard to recognize in female (Zeliadt, 2018).

Types of Autism

The first type of Autism, Autistic Disorder or “Classic Autism,” is what people picture when they heard ASD. People with Autistic Disorder exhibit all the usual symptoms such as language delays, social and communication challenges, increased interest in strange or unusual topics and interests, and delays in learning and information processing (Autism Society of America, 2014). In most cases, those with Classic Autism tend to be either completely non-verbal or lacking in verbal communication skills, which places it at the more severe and of the spectrum (Ambitious about Autism, 2013).

Asperger’s syndrome, the second type of autism, is characterized by difficulty with social interaction, restrictive interests, and a distinct desire for sameness and routine, but what sets Asperger’s syndrome apart from other types of Autism is the remarkable strengths most possess such as “remarkable focus and persistence, aptitude for recognizing patterns, and attention to detail” (Autism Speaks, n.d.).

The final type of Autism is Pervasive Developmental Disorder also known as atypical autism. People with Pervasive Developmental Disorder may have some but not all characteristics of

autism or have relatively mild symptoms (National Institute of Neurological Disorders and Stroke, 2018). For instance, a person may have significant autism symptoms in one core area but mild or no symptoms in another core area such as restricted (Autism Speaks, 2013). People with PDD do not all fit under one large umbrella term that can truly encapsulate their level of intelligence- people with PDD may be high functioning or low functioning

Treatment:

There exist a large variety of treatments that are non-medical and can virtually counteract the symptoms of Autism. They are all built upon the basis of teaching communication, and expression of emotions nonverbally and channeling the emotions into words. These non-medical approaches teach not only basic communication skills but also how to avoid ticks and hyperfocused interests (Autism Society, n.d.).

When non-medical intervention fails, doctors begin administering medication. The problem that arises when electing to prescribe drugs is there is no medication specifically catered to those with autism; making the list of side effects almost infantesimal (Griswold, 2016). People with autism must make do with a concoction of ADHD medication, Antidepressants, Anti-anxiety pills, and Antipsychotics (Bertin, n.d.).

Savant Syndrome

As opposed to the common misconception, people with autism are no less capable of being intelligent. In fact, people with Autism may have a level of intelligence far higher than the

regular person. 1 in 10 people with autism also have “Savant Syndrome which is defined as a rare, but extraordinary condition in which those with Autism have some island of genius, which stands in marked, incongruous contrast to overall handicap.” (Treffert, n.d.). Some common Savant abilities include lightning-fast calculation, a borderline photographic, the ability to compose complex musical scores, an affinity creating art, and an ability to learn languages (Hiles, 2002).

The Stigma

Before Autism had just been recognized as a mental disorder, doctors would refer to those with Autism as “unwell” and “insane.” Although these terms are no longer used to describe Autistic people today, we cannot claim the disease has been completely destigmatized. Currently, Autism is recognized as a mental disorder, yet a study in Asia-where Autism is more prevalent- only a third of children who exhibit the symptoms are diagnosed or treated (Sarris, 2015).

Efforts to destroy the stigma surrounding Autism have been made in western countries; some have even tried to want to replace autism spectrum disorder with autism spectrum condition because reflects that these individuals are not simply plagued by a list of never-ending cons (Baron-Cohen et al, 2009).

However much progress is being made in other parts of the world, the middle east remains unchanged. One Palestinian woman even went as far as to say that every time she walked down the street with her son, she felt like a show. She felt as though every single prying eye in the country was watching her and her son (Sarris, 2015). Another woman, also in Palestine, also recalls the profanities being thrown at her by friends and family. She was told “to get rid of her

son,” was asked “Why are you taking care of him?”, and When her son got sick, people continued to ask why she even bothered spending money on him (Sarkar, n.d.). In some countries, the Stigma surrounding Autism is so severe and prevalent, that the sufferers are pushed to commit suicide. In Asia, some formal studies have even found Autism as one of the largest risk factors of Suicide; one study showed that almost 4% of those with ASD attempted suicide in a ten-year span as opposed to the 1% of the control group (Sarris, 2018).

Methodology

Type of Research

Small-sample statistical survey

Data Collection Tool

Due to Google forms a simplistic interface, it was relatively easy to create a questionnaire. Google forms allowed me to share questions, and create and analyze graphs and charts in a short period of time. Using this semi-structured questionnaire helped me get the direct and accurate answers to both qualitative and quantitative questions that will help me to answer my research question. Another reason for using google forms is that it allows the participants to give their opinions while maintining anonymity.

Procedure

Before creating the survey I read a plethora of articles, studies, and other researches and completed my literature review to ensure I had a satisfactory amount of information about my topic. Then I began creating my questions by writing any and all ideas regarding my topic. Slowly, I began to narrow down the questions and eliminate the overused and vague questinos questions. Finally, I copied my questions into my Google forms, eliminated any grammatical mistakes or unclear words, and emailed the form to my peers.

Participants

Because this study was a small pilot study as opposed to an official, professional research, the results cannot be applied worldwide but are rather localized in my community. The focus group of this survey was small and limited to Student of Dar Jana International School, Jeddah, Saudi Arabia freshmen to seniors with a few exceptions. The survey received exactly 145 responses where the majority if not all responses were of similar Middle Eastern upbringing. The reason for choosing this control group was I wanted the participants to be close in age and similar enough in upbringing but still different enough to where the mindsets and opinions differ.

Data Analysis and Discussion

All questions are found in Appendix A

All automated graphs and pies are found in Appendix B

All tables and edited pies are found in Appendix C

Awareness and Knowledge

Questions 5 to 7 were created with the intention of collecting information on the general public’s consciousness of Autism. As widespread as Autism is, an unfortunately large majority have never even heard of the disorder. According to the Center for Disease Control and Prevention (2018), 1 in 59 children is afflicted with autism, but in my pilot research, I found that 12.4% had never even heard of Autism. Another 15.2% were unsure of whether or not they had heard of the disease. The average knowledge of Autism is 4.75 on a scale of 1 to 10. Not only is society’s awareness of Autism minimal, but they also have a very mislead misconception about how Vaccines are caused by Autism. 29% blatantly answered “Yes.” Another 43.4% replied “maybe,” “unsure,” and “no opinion on the matter.” A large majority of people believe that vaccines may possibly cause autism which shows how deeply ingrained the misconception is. There is absolutely no evidence of an association between increased exposure to vaccines and autism has appeared (The College of Physicians of Philadelphia, 2018).

View of Autism

Another delusion deeply held by people is that people with Autism must be mentally delayed in terms of education and learning. Some people believe that if you have autism there is no way in

which you may be more intelligent than someone without. The purpose of question 8 was to test whether people truly believed that. Nearly 23% of the participants outright claimed that people with Autism cannot be more intelligent than those without. The next question, question 9, was used to collect data about how people feel towards Autistic children. Although a large number of people were generally supportive (as shown in the pic below). 28% of people would be accepting and another 26% would be loving. But in contrast to those results, 4% of people feel hateful, 8% of people would be disappointed, and 7% would be disappointed.

Question 13 was added to the questionnaire with the intent of collecting quantitative data regarding whether people with Autism should be isolated from those without. 55.2% of participants, 80 people, responded no. Whereas 17.9% of people said yes and 26.9% responded to a certain extent. Number 14 was used to collect qualitative data for those who answered to a certain extent in the preceding question. The model answer was that people with Autism should be separated into educational circumstances. Many of the participants believe that people with Autism are less capable and require special education such as those without Down’s syndrome or dyslexia, but according to Pratt and Bellini (1996), students afflicted with Autism are not at an

educational disadvantage. They require special care but are in no desperate need for isolation. Furthermore, when participants were asked if people with Autism can be more intelligent than those without, 24.8% of people said “no” although the aforementioned information shows that there is no direct correlation between all types of autism and level of intelligence. In fact, those with Savant syndrome, a disorder in close relation with Autism, may be far more intelligent than those without. Another factor questioned in the survey was whether the participants had ever seen Autism represented in the media, quantitative data, and how the representation had been, qualitative data. Question 10 questioned collected the quantitative data, and the results showed that almost 34.5% of people had never seen ASD in the media, and of the 74 people that did see it represented, only 35.2% has seen is positive. The results showed that 22.1% have seen it in a negative sense, 16.6% have seen the character as psychopathic, and 19.3% saw those with the disorder represented as emotionless. Although People with Autistic people are often seen callous and emotionless due to their socio-cognitive difficulties, they are capable of feeling emotion and empathy just simply in a way different than those who are Neurotypical (Leno et al., 2015).

Correlations

The most prominent correlation in the data is the fact that as age decreased, the prominence of the stigma and the negative view of Autism increased. For example, in question 5, the majority of Seniors and Juniors, 79% to be exact, said they had heard of Autism; however, amongst the Sophomores and Freshmen that replied to the survey only 55% had heard of ASD. Another instance that showed the presence of the correlation is number 7 where I asked whether the participants believed that vaccines cause Autism. Within the subject pool of Juniors and Seniors,

a minuscule 3% believed that vaccines cause autism. On the other hand, of the sophomores and freshmen, a staggering 53% believed that. Despite the fact that the younger of the two control groups, the sophomores, and the freshmen, had a self-assessed mean knowledge of 4.8, 12 tenths of a point higher than the Seniors and Juniors, they seem to be far more misinformed and unaware.

Conclusion

The risk factors and causes linked with autism include but are not limited to genetic disposition, increased parental age, and substance abuse. These risk factors increase a child’s disposition to three main types of Autism: Classic Autism, Asperger’s Syndrome, and Pervasive Developmental Disorder. Each level of Autism comes with varying levels of learning difficulty but does not render the children with Autism incapable of learning and understanding. In Fact, some special cases, people with autism possess an indescribable level of intelligence far above the average. Those remarkable cases are referred to as Savant Syndrome.

The perception of Autism in the middle east was found to be predominantly positive, but as the age of the participants decreased, the number of individuals who had a negative viewpoint increased. Younger teenagers were always less aware of the true nature of the disease like the intellectual capabilities and the causes. Although The majority of the youth were misinformed and unaware, one can say with certainty that Autism has been relatively destigmatized in comparison to the past. I hope that in the future, people become more accepting and learn to view others as more than simply their disease or disorder. I hope one day, Autism and all other mental disorders can be completely destigmatized.

Part II: Critical Reflection

From the start of senior year, I had a dark cloud hanging over my head. Every time I thought of the second semester I was overcome with an overwhelming sense of apprehension. I did not know what I wanted to research, how I should go about it, or even why I should be researching. Time and time again I tried to begin my research, but I hadn’t the faintest idea how to begin. The process began with The first step of the DRC which was identifying a puzzle. Immediately I gravitated towards a medical topic. The first topic that came to mind was mental disorders, but it is obviously far too boring to be discussed in a single pilot research. Step 2 was to narrow down my topic to something more manageable. I settled on Autism. I wanted to understand the disease, and I also knew that I wanted to analyze the stigma surrounding it. However, I didn’t know how to formulate the research question, which is where step 3 came in. Needless to say, this step was the source of much of my unease. At first, I thought I could ask “How severe is the stigma surrounding Autism in the Middle East?” But then I came to the conclusion that I couldn’t analyze how deeply rooted and skewed the people’s view of Autism was without understanding the disease. So I decided the perfect research question would be “What is Autism and how severe is the stigma surrounding it in the Middle East?” Step 4 is the last of the grueling decision-making process. I had to decide between a survey and a questionnaire. Automatically, I knew that the survey was the correct method because I needed to get a large number of opinions on topics regarding Autism.

Steps 5 and 6 were relatively effortless because I had had these questions planned out from the moment I chose my question. In a matter of days, my survey was completed, approved, and sent out. My concerns were never ending; I constantly questioned if I would get enough responses, how I would analyze the responses. Within two weeks, I had received 130 responses. Steps 7

and 8 were by far the most interesting. I was given an opportunity to see inside the minds of others. Although it was the most enjoyable it was also the most taxing. I had to separate the values and manually create excel tables and graphs to help me see the correlations. With that out of the way, I started to polish my research. Steps 9 and 10 were mentally draining because as a perfectionist, it took me a lot of time to get my research to the level at which I wanted it to be. I worked diligently and tirelessly and am ultimately proud of myself for being so vigilant, and perseverant. I am proud of the work I have done and am ready to say that my senior graduation research is complete. I can thank the research for teaching me to work hard and always work as efficiently as possible. As I submit this research, I realized I have officially completed the last major English assignment of my senior year. College here I come!

References

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