The Stigmatization of Autism in Society: Does it have to be this way?

Abstract

The purpose of this paper is to inform young adults, possible employers of those with autism, and those interested in learning more about the stigmatization of autism within society. Autism is one of the most common neurological differences – yet is all too often misunderstood. Though a relatively new term, introduced in the 1900s, autism has existed within human societies for far longer – but was only medicalized and treated as a disorder much more recently. Many of those with it have demonstrated incredible intellectual and artistic talent, making autism a catalyst for bringing diversity into society. The isolation and ostracization that many of those on the spectrum experience is not only completely unjustified and morally wrong, but it is also detrimental to all of humanity when these unique individuals’ talents are being suppressed and their voices’ muted. Does it have to be this way? Companies like Ernst and Young are adopting new programs designed to help bring the neurodiverse into the workforce, putting these individuals’ incredible talents to meaningful work. Modern movements centered around equality have also aided in forming an environment conducive to change, an environment where the needs of those with autism can be brought to light. If we all work together to support those with autism, including them in the workplace, friend groups, and social events, we can break the stigma around those that do not fit in to what is perceived as “normal”.

Introduction

“Most people see what is, and never see what can be.” ~ Albert Einstein

Autism Spectrum Disorder (ASD) is a neurodevelopmental disorder used to describe an ever-increasing number of the world’s population. A recent CDC study indicates the prevalence of autism is now as high as 1 in 40 children, a remarkable increase from 1 in 125 children just ten years earlier. (CDC, Data & Statistics on Autism Spectrum Disorder, 2020) In 2013, The American Psychiatric Association updated the diagnosis for autism in the release of the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5). The disorder involves deficits in both social communication and social interaction combined with repetitive or restrictive patterns of behavior and thoughts. The use of autism to define people is relatively new; the term was coined in the 1940s and added to the DSM in 1994 (Zeldovich, 2018). As a spectrum, ASD incorporates an ever-growing number of traits. This array of traits has meant that vastly different people can fall under this single term; this wide range has prompted skepticism, even criticism, from a culture that seems to forget its most fundamental teaching about accepting and celebrating diversity.

In the struggle to be “normal” and “fit in,” people with autism all too often lose that spark that makes them unique. However, as a society, do we want to criticize people for their differences or celebrate them for their unique attributes and perspectives? This paper will explore how autism is more than a neurodevelopmental disorder and instead an enormous opportunity to add diversity and enhancement to our American society.

As Americans, we believe the hallmark of being human is uniqueness – everyone possesses distinct traits. We champion the rhetoric that everyone is an individual, and in theory, we celebrate the person who “marches to the beat of their own drum.” We are encouraged to champion and celebrate diversity, but sadly, we become uncomfortable with people who are perhaps a little too different. In one study on individuality and difference in American culture, researchers found that Americans’ “cultural-based values of independence do not promote the development of mental tools needed to take into account another person’s point of view” (Keysar, 2007). We tend to overlook this when interacting with an individual with autism. In short, as a society that champions diversity, we struggle to accept people capable of bringing that diversity to it.

Individuality

ASD is a broad diagnosis encompassing those that are low functioning and in need of substantial support, to those who are high functioning, needing very little support. Since childhood, I have developed a unique perspective on ASD, having been surrounded by friends and family on both sides of the spectrum. While I understand the fundamental need for early diagnosis and intervention as a substantial benefit for people with autism, I found that the label of ASD can create bullying and prejudice as so many do not understand the varying degrees of this “disorder.” Those that look “normal” and do not broadcast their diagnosis (or outwardly identify as having an ASD diagnosis) are expected to act normal. Those people who appear to pass as “normal” based on looks and disposition are often the ones subjected to more ridicule and bullying.

When a person who looks “typical” acts differently from what others would expect, they are called strange and ostracized. The uncomfortableness that much of society feels towards these unique individuals can snuff out the light that people with autism bring. I have heard stories from all of my autistic friends about being called “retarded,” “mental,” and “weird” at some point in their lives. These insults can result in internal trauma, causing them to further distance themselves from the outside world, and research finds these experiences cause deleterious outcomes (Hoover, 2018). While many with autism struggle to understand specific social cues, they are prohibited from further learning and practicing those social skills with their “neurotypical” peers and colleagues because of society’s ignorance of the condition. A study found that ASD children are bullied three to four times more than non-disabled peers, negatively impacting their mental health (Hoover, 2018).

Contributions and gifts

The neurodiversity movement aims to remove the stigma of “abnormal,” believing that eliminating the stigma surrounding an ASD diagnosis would build resilience in children with ASD (Schmid, 2019). Nurturing self-esteem in children and teens and encouraging them to embrace their uniqueness can prepare them to handle the challenges they will face in college and adulthood when seeking employment.

Furthermore, despite people with autism facing social-environmental challenges, ASD can also come with notable advantages. Many people with autism have exceptional long-term memories, intelligence, perception in their senses, and sometimes a better understanding of animal behavior (Crespi, 2016). In the past, many distinct cultures recognized the diversity within their society and adapted to it – even going so far as embracing these differences. While there is no concrete evidence, as again, the term ASD is relatively novel, many experts agree that certain well-respected timekeepers, mathematicians, and scientists of the ancient world, may have also been on the autism spectrum.

Psychologist Simon Baron-Cohen from Cambridge University and many other leading psychiatrists have claimed that Albert Einstein showed signs of ASD (Buchen, 2011). Einstein’s work on relativity revolutionized the world’s understanding of the universe, and his discovery of the photoelectric effect won him a Nobel Prize for Physics in 1921. In an era when ASD labeling did not exist, it led to significant discoveries from individuals now thought to have had ASD. Simon Baron-Cohen also thinks autism is more prevalent in families of scientists and engineers (Buchen, 2011). Her research even found a genetic link between mathematical talent and autism; they found a three to sevenfold increase for ASD among first-degree relatives of mathematicians (Baron-Cohen, 2007).

The idea that Autism Spectrum Disorder is a disorder assumes that it must be “cured,” not allowing the individual to be seen as an example of the diversity present in the human condition. When observing actor Sir Anthony Hopkins, who was diagnosed with ASD later in life, we see an example of autism not as a disorder that needs to be “cured” but as a condition that adds to human diversity in society. He has won many accolades, including an Academy Award, two Emmys, and knighted by Queen Elizabeth II for service in the arts. (Gannon, 2017) When asked if ASD helped him with acting, he stated, “I definitely look at people differently. I like to deconstruct, to pull a character apart, to work out what makes them tick and my view will not be the same as everyone else (Gannon, 2017).” That difference in view makes us all, particularly those on the spectrum, unique and an essential contribution to society.

Furthermore, as artificial intelligence and computer science extend their reach to all parts of society, a demand for those skilled in the medium increases. Many people with autism have shown exceptional expertise in pattern recognition, information analysis, and other foundational skills of technology (Auticon, 2019). From the Institute of Cognitive Neuroscience at UCL, Professor Lavie found autistic individuals could focus and process information more quickly without distraction (Remington AM, 2012). She states, “Our study confirms our hypothesis that people with autism have higher perceptual capacity compared to the typical population (Castillo, 2012).”

This innate aptitude over an average neurotypical person makes many on the spectrum ideal candidates for jobs that work in the burgeoning field of IT. In fact, around 51% of workers with ASD carry higher skills than what their current job entails, yet less than 1 in 6 adults with autism have a full-time job (Twaronite, 2019). Why is this? Frequently, when a person on the spectrum is interviewed for an occupation- even if they have been educated for years and excel at the particular work required for the job- they are rejected simply based on social quirks (2019). The extraordinary skills and unique perspective of individuals with autism have been dismissed by a culture that cares more about social norms and fitting in than diversity and workplace improvement. A company making this change is Ernst and Young (EY) through a neurodiversity program initiated by executive Hiren Shukla. He recalls telling his boss, “you have this population of neurodiverse individuals that are known to be extremely detail-oriented, extremely logical, and process-focused. We are moving into emerging technology and we need to think differently to disrupt ourselves — where are we going to find this skill set?” He advocated that some individuals with autism are quick at learning new technologies and would boost the firm’s bottom line (Lebowitz, 2019). In a pilot project at EY, “neurodiverse EY employees saved roughly 800 hours for the firm (which translated to $100,000 in cost savings) when they redesigned an automation process (Lebowitz, 2019).” They have developed a neurodiversity program to hire even more neurodiverse individuals throughout the company nationwide. They have received recognition by increasing innovation and productivity with this program, while helping other companies follow this path, and give hope to those with autism (Twaronite, 2019).

Culture

Culture plays a significant role in the stigmatization of differences, both within ASD and outside the spectrum. Culture influences our behaviors, and therefore local norms can significantly impact the response to typical autistic mannerisms. In South Africa, for example, it is considered disrespectful to look directly at an adults’ eyes whilst in conversation (DeWeerdt, 2012). Meanwhile, lack of eye contact is a trademark of autism and is commonly considered an indication of having autism- a diagnostic trait that is often dismissed in South African culture (Erickson & Shaffer, 2017). Western clinicians might overlook such local/cultural norms and misdiagnose, causing severe problems for both the patient and the understanding of autism by society. A famous example of another stigmatized mental difference is epilepsy; although, among specific Hmong populations, epilepsy is revered. It is said that epileptic individuals within Hmong society often become shamans – a highly respected group within that culture, a view not shared in our western diagnostic methods (Fadiman, 1998).

In addition, the media has also had a significant impact on how the general population views autism. Frequently, the media (movies, television series, and books) is a major source of information that neurotypical people have to learn about the disorder. Autism is commonly dramatized in shows like Sherlock Holmes in Sherlock on the BBC, Shaun Murphy in The Good Doctor on ABC, and Sheldon in The Big Bang Theory. These shows only depict a small portion of autistic individuals, and they either portray the savant nature of the disorder or use it as comic relief, thus seriously undermining the vast majority of individuals with autism who do not fall into these select categories. Even as the media tries its best to show the bright sides of autism and aims to have as realistic of an outlook as possible, like Sam Gardner on Atypical, it can still create the same negative consequences. When real people let neurotypicals know of their diagnosis, they are assumed to be like those depicted on television. When they “do not hit the mark,” it can result in them being bullied and misunderstood. As a society that is revisiting and revising our racist, sexist and discriminatory history, we are broadening our perspectives of others and becoming more inclusive – but when it comes to the neurodiverse, we still have more work to do.

Social communication and interaction

Through my interactions with autistic friends, my cousin, and kids I interact with in my organization, Connect A Kid, my personal experiences have allowed me a unique perspective into the clinical diagnosis for autism: deficits in social communication and social interaction of autistic traits (CDC, Diagnostic Criteria, 2020). I have developed a keen awareness of the breakdown those with autism face in developing and maintaining reciprocal relationships and the deficit in nonverbal communicative behavior, such as body language. Connect A Kid was formed to provide the neurodiverse with nurturing social interaction with neurotypicals who understand these deficits. It helps both neurodiverse and neurotypicals understand one another and helps form meaningful relationships.

To investigate autism in children more fully, I interviewed Tim Kowalski, MA, CCC, a social pragmatic who works with neurodiverse individuals. I learned that the majority of individuals with autism often lack understanding of the hidden rules of life, the ones neurotypicals instinctively pick up on. According to Dr. Kowalski, neurotypicals go to school and generally know what to expect from a strict teacher and a relaxed instructor on the first day of class, while the neurodiverse often do not see this. He stated that the time and place of appropriate behavior is something they often miss. They may not understand that math class behavior is different from the lunchroom. The basic understanding of body language is challenging; facial expressions and, more importantly, the nuance of tone is something they work hard on (2021). I learned from him that autistic individuals have a hard time distinguishing between “sit down” [harsh tone] vs. “sit down” [soft tone] – a big difference to neurotypicals. Thus, in turn, this gets them into a great deal of trouble in social situations. My understanding is that they do not always comprehend how the difference plays a prominent role in such empathetic interactions. When repeatedly interacting with people who fail to understand this, the individual with autism can be left with “emotional overlays”; they struggle to grasp why the world is so harsh and punishing them (Kowalski, 2021).

Behavior aspects

From personal experience, the clinical diagnosis for autism under behavioral aspects is commonly encountered among those I interact with. It incorporates repetitive motor movements, insistence on routines or ritualized patterns or behavior, and a hyper or hyporeactivity to sensory input (CDC, Diagnostic Criteria, 2020). The ASD-diagnosed individual can go on and on about a topic once it is on their mind. They find comfort in the repetition. (This is referred to as stimming, a repetitive stimulating behavior; common examples are stacking objects, rocking, repeating words, pacing, or even banging one’s head (Smith, 2018)) It mostly comes from stressful situations and can be triggered by fear. Understanding what to do under these circumstances is crucial. The primary importance is to avoid shaming and using nonjudgmental language. The idea of redirecting the behavior is what makes it difficult for neurotypicals to understand. Many autistic individuals crave routine to avoid the fear of the unknown, thus avoiding shaming (Smith, 2018).

My friend, when he was feeling overwhelmed or anxious, would repeatedly rock back and forth. If he did this at school, they would call him names, making the behavior even more pronounced. It was thought of as a bad habit at home, and it caused him a great deal of emotional scarring since he was unable to stop. Once he was diagnosed, his family and friends, including myself, would use the rocking to signal that he felt anxious and found ways to distract him or make him comfortable. More often than not, autistic children are left emotionally damaged from the interactions with neurotypicals even if that neurotypical person is sympathetic to the plight of the autistic child (Hoover, 2018).

Conclusion

My generation strives to be better and move positively towards diversity, equity, and inclusion. I believe we must change the way we look at all members of society, not just through the lens of race, ethnicity, and gender, for example, but also how we interact with all groups, including the neurodiverse. The year 2020 has brought renewed demands for justice throughout the world. These collective actions have been primarily focused on racial justice through movements like Black Lives Matter. The ideal that drives them is the establishment of a more just, equitable, and inclusive society for people from all backgrounds and orientations. Given the unjust murders of Black and Brown people by police, the violence experienced by African- Americans has understandably been at the center of these demands. Nevertheless, the movements are rooted in a belief in providing safe and equitable schools, communities, and opportunities. These same ideals are also necessary for the Autism community. Too often, kids with autism are mistreated and misplaced in school systems that do not understand their needs. As I have learned from interviewing Dr. Kowalski, young people with ASD can see themselves as broken, damaged, or simply not good enough due to their interactions with neurotypicals. In their struggle to “fit in” and be “normal,” they so often lose what makes them unique. Their individuality is silenced, and their unique voices are snuffed out. Ultimately, we all lose out by creating a less robust society, less informed, less varied. We attempt to create a cookie-cutter homogenous society where differences are unwelcome, leaving many emotionally scarred if they cannot meet the standard. As a society, we fall far short of meeting our fullest potential when our neurodiverse youth’s talents, creativity, and strengths are not developed, nurtured, and given the opportunity to contribute to the broader community. Clearly, it is not just the individuals that suffer because, as a whole, we all lose when potential contributions are foreclosed on. Does it have to be this way? I believe the answer is clearly, no.

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