A few weeks ago, one of my relatives was thought to be autistic and was going to be diagnosed. As one would imagine, I feverishly researched everything I could about autism or the other term for it: Asperger Syndrome (AS). Something that struck me was how the definition of the condition as a “disease” affects those in question, shaping their families, their surroundings, and their world. I began to question if society’s perception and acknowledgment of autism as a deficiency is even ethical. After further research, I have come upon the answer to my question.
Autism is a spectrum. This explains why one may find two very different individuals on the spectrum. Autism can bring difficulties in communication, social interaction, and emotional awareness; it can also bring sensory sensitivity, sensitivity towards change of routine and environment, and unusual behaviors such as strange body motions, obsessive interests, and astonishing talents. The condition occurs when the developing brain is neurologically wired differently from the norm, and that is why it falls under the category of a neurodevelopmental disorder. Is a difference in neurodiversity really a disorder or simply a difference? Sometimes it may be difficult to accept differences, especially major differences, but without acceptance, the world would be quite dull. Therefore, society should accept and cherish those who bring this diversity and color into daily life instead of excluding them from it.
Keeping this in mind, in the late 20th century, sociologist Judy Singer devised a more truthful and accepting word to describe autism: through the concept of the neurodiversity paradigm, it replaces autism’s misleading definition as a disorder or deficiency. Autistic people are neurodivergent; the definition states that neurodivergence is positive. In contrast, non-autistic people are neurotypical. As these terms accurately describe the condition rather than labeling it as a “disease”, this is the definition of autism that will be discussed for the rest of this article.
As Jac den Houting describes in her TEDx Talk, “The neurodiversity paradigm is an alternative way of thinking about autism. It describes autism as a part of the range of natural variation in human neurological development. At its very simplest, autism is a very different way of thinking. Neurodiversity can help create a healthy and sustainable cognitive environment. According to the neurodiversity paradigm, there are no right or wrong brains. All forms of neurological development are equally valid and equally valuable. And regardless of what type of brain you’ve got, all people are entitled to full and equal human rights, and to be treated with dignity and respect.”
Another theory that asserts that autism is not a disorder is the “double empathy problem”, developed by autistic researcher Dr. Damian Milton in 2012. The “double empathy problem” argues autistic individuals do not actually have social difficulties: they are just misunderstood by people that think differently than them and are understood by other autistic people. Houting presents this idea: “In the last couple of years, a handful of autism researchers have jumped on board with the double empathy problem, and they’ve decided to test it scientifically. In one study by Dr. Catherine Crompton from the University of Edinburgh, researchers created a task called a diffusion chain. This is similar to a game of telephone in which pieces of information are shared from person to person and the objective is to convey the information as accurately as possible. The task was completed amongst three groups of participants. The first group was composed of autistic people, the second group was non-autistic or neurotypical people, and the third group was a combination of both. The researchers found that all autistic and all neurotypical groups were equally accurate in their information sharing but the combined autistic and neurotypical group was significantly less accurate and less clear in their information sharing. This suggests that autistic and non-autistic people communicate equally well. It’s the mismatch between those communication styles that causes the problems, exactly as the double empathy problem predicts.”
Often, autistic individuals struggle due to their condition. Some may argue, isn’t autism a disorder since it brings deficiencies with it? Jac den Houting does not believe so. She argues that an individual’s experience with a disorder is largely shaped by their external environment. She asserts in her Tedx Talk, “The way that we’re used to thinking about disability is based on a medical model of disability. The medical model assumes that disability is an individual problem. It places disability within the disabled person. …In the social model, disability happens when a person’s environment doesn’t cater to their individual characteristics.”
The neurological differences that define autism bring both difficulties and advantages, but don’t all individuals experience both negative and positive circumstances? In her TEDx Talk, Vikie Shanks communicates this view when she speaks of her autistic daughter, Nikita. Shanks states that she said to her daughter, “Nikita, there are some things that I’m good at that you’re not very good at, and you know there are some things you’re really good at that I’m not good at. If there are some things that I’m good at and you’re not and things that you’re good at that I’m not, does that mean that I’m disabled as well?” After this event, Shanks describes that she “started to see a perceptible positive change” in Nikita.
To make the world a more comfortable and happy place for autistic individuals, it is important to be mindful of their social environments and to help contribute to an atmosphere of positivity instead of negativity. In his TEDx Talk, Chris Varney communicates this concept by emphasizing that society should love and accept the exceptional traits of autistic individuals and create a comfortable environment for them. Varney adds, “I came from an environment where my brave mother removed my disorder by creating an environment free of a stigma that would inhibit me. Twenty years have passed since I have been diagnosed. In my work I see this stigma holding back kids all the time and it’s going to require all of us to do something about it. If you’re a child or a young person on this spectrum, hear me: Never let a label limit what you are capable of.” Indeed, society should create an environment where autistic people are part of the world and not a missing piece: they should be supported by others and allowed to focus on fostering their talents.
So how should society nurture its neurodivergent population? Vivie Shanks asserts, “We need better understanding. We need to value these people alongside everyone else. And so we need to enable them, not disable them. We need to make them feel as though they have something valuable to offer.”
Shanks continues, “What if the autistic condition, by its nature, is not one of incapacity or disability, but simply one of profound sensitivity… which, given the right environment, could lead to a flourishing and impressive life, with a lot of great value to bring to the rest of us? Depending on the environment that we create around an autistic child, they have the potential to thrive.” Ensuring that society helps neurotypical people cope with their struggles and fulfill their aspirations and creative desires should be just as prioritized as helping neurodiverse people feel comfortable.
Another aspect of autism is misdiagnosis in females. At the time when diagnostic tools for autism were developed, autism was only researched in males. As a result, autism in females is often harder for doctors to identify. There are four times more males with diagnosed autism than females. On average, males with autism are diagnosed before the age of eight, while women are diagnosed after the age of thirty. This significant disparity in diagnosis is destructive: it can lead to depression and a misunderstanding of oneself. In addition, it can tragically lead to a misdiagnosis or the prescription of medications for the incorrect condition. Society must change its diagnostic system to include tools for both males and females.
The societal struggles that autistic individuals face all largely derive from misinformation. Before I researched autism and wrote this article, I had limited knowledge of what autism was, and that knowledge consisted only of stereotypes. If everyone chose to learn more about autism and other conditions through individual research, looking at all different types of perspectives, then society would begin to better understand autistic individuals, meet their needs, and build a beautiful environment for them to express their talent. Let all of society be a part of this change! I have become another advocate for transforming how society perceives autism. Now, it is your turn to spread the word and help to redefine society’s perception of autism. Thank you for being part of the change!
For Those Who Love Beautiful Stories:
In her TEDx Talk, Vivie Shanks tells the following story about her daughter, Nikita:
“Nikita decided to go to mainstream college twenty miles away to study Performing Arts, following the footsteps of her three older sisters. The day she was due to start, I got her in the car. We drove to the college. I said, ‘Let’s go in.’ She said, ‘No, I’ve changed my mind. I’m not going.’ So I cajoled and begged and eventually I tricked her into going to college, and she stayed the whole day. When I picked her up, she came out and she looked quite happy.
I said, ‘How did it go?’ She said, ‘Well, we had to do an icebreaker. We had to tell what we thought our greatest strength was.’ Nikita had decided in that moment to tell everyone not only that she’s autistic, but also that she saw her autism as her biggest strength. In that moment, Nikita took total ownership of who she is. I know how much courage that took and how far she has come.”
How have your perceptions of autism changed with this article? Write your thoughts in the comment section below. Thank you!
LAMPLIGHTER 