What Is Autism Exactly?

How Society Defines Autism vs. How Autistic People Define Autism

(Modified from an excerpt from Alex’s upcoming book, “Find8ng My Verse: An Autistic Creative’s Search for Meaning”)

Alex Gentry 

Many people talk about autism and have their own ideas or experiences of it. Thus I would like to take a look into what autism is exactly. We need to take a look first into how it is defined by the traditional narrative and then into an autistic-centered narrative. The difference between the two definitions rests greatly on the agency of autistic people and portraying them as either lists of traits society disapproves of that need to be fixed or as full and complete human beings deserving of equal rights, opportunities, and outcomes. In my research on autism, coming from a social sciences background in anthropology, I seek to look at autism from a social science lens, on how autism is defined culturally, socially, and politically, which shall be discussed in future articles. As an autistic writer I must confess this is an important matter to me personally as well. 

What is autism? An excellent question. As I’ve been learning about autism the past few years, I have come across many different answers. Every autistic person’s autism is different and affects them differently so I am writing purely based on my experience with mine. In my observation, there is a common thread that is displayed: social difficulties, communication difficulties, and sensory difficulties combined with great memorization ability, pattern-based and lateral thinking, and a level of dedication, focus, and perseverance (especially with whatever interests or captivates them) that most envy.

There is also a level of emotional intensity in autism that is not commonly found elsewhere. We can feel intensely for ourselves and for others or we have a hard time feeling anything at all. We feel our emotions so much, but we don’t always have the words or tools to describe what we’re feeling. Autism is both a disability and a superpower. It is not a disease or a disorder, contrary to what much popular media portrays. Relations between the autistic community and the medical community have been very tense, and the medical community has traditionally held the power over describing what the autistic narrative is. However we, the autistic community and our allies, tell a different story, a different narrative, and we want to create a dialogue with the medical community for them to finally listen to us and change their narrative about us. 

Autistic scholar and professor Nick Walker writes: “Autism is a genetically-based human neurological variant. The complex set of interrelated characteristics that distinguish autistic neurology from non-autistic neurology is not yet fully understood, but current evidence indicates that the central distinction is that autistic brains are characterized by particularly high levels of synaptic connectivity and responsiveness. This tends to make the autistic individual’s subjective experience more intense and chaotic than that of non-autistic individuals: on both the sensorimotor and cognitive levels, the autistic mind tends to register more information, and the impact of each bit of information tends to be both stronger and less predictable.” He writes in his article “What Is Autism” these main points about autism:

1. Autism is a developmental phenomenon, which means it begins in the uterus and completely influences one’s development throughout their life. It creates an atypical way of thinking, moving, interaction, and sensory and cognitive processing, therefore being a different neurological “operating system” than neurotypicality. 
2. Between one and two percent of the world’s population is autistic. The increase in diagnosis is the result of increased public and professional awareness, rather than an actual increase in the prevalence of autism.
3. Autistic people are very different from one another despite their common traits, and some have exceptional cognitive skill. “However, in the context of a society designed around the sensory, cognitive, developmental, and social needs of non-autistic individuals, autistic individuals are almost always disabled.” Autistic people are consistently disabled in the social realm because an autistic person’s experience of the world is much more intense and chaotic than that of a non-autistic person. Because of this the constant task of navigating and integrating that experience occupies much more of their attention and energy, so they have less energy and attention available to focus on the nuances of social interaction. Because of this they are far more prone to social rejection because of misunderstanding or not perceiving the social expectations of non-autistics. This social rejection ends up “compounding social difficulties and impeding social development.” 
4. Because of what Walker previously stated, autism is characterized by non-autistic society as “a set of “social and communication deficits,” by those who are unaware that the social challenges faced by autistic individuals are just by-products of the “intense and chaotic nature of autistic sensory and cognitive experience.”
5. According to Walker, “Autism is still widely regarded as a “disorder,” but this view has been challenged in recent years by proponents of the neurodiversity model, which holds that autism and other neurocognitive variants are simply part of the natural spectrum of human biodiversity, like variations in ethnicity or sexual orientation (which have also been pathologized in the past). Ultimately, to describe autism as a disorder represents a value judgment rather than a scientific fact.”

To put into context why autism is widely regarded as a disorder rather than a disability, autism is described by Wikipedia as “a neurodevelopmental disorder characterized by impaired social interaction, verbal, and nonverbal communication, and repetitive behavior” and by the CDC as “a group of developmental disabilities that cause significant social, communication, and behavioral challenges.” 

First of all, it’s better to call it a disability instead of a disorder, because it feels stigmatizing to call autism a disorder. It makes me personally feel dehumanized. Secondly, I question whether the impairments in social interaction, verbal and nonverbal communication, and repetitive behavior are all that it means to be autistic, or even that those impairments are truly such at all. I think not. It’s time for that narrative to change. We autistics have a different neurological operating system, a different way of social interaction, verbal and nonverbal communication, and behavior than neurotypicals, and our behavior, communication, interaction, and voices are just as valid as those of neurotypicals. I am not a list of deficits. While there are deficits to autism, there are also assets. While there are assets to being neurotypical, there are also deficits. I am autistic; it is a fundamental part of my identity, and no one will take that away from me. I strongly advise that autism must neither be called “autism spectrum disorder” nor “ASD”, but just “autism” or the “autism spectrum”.

Here’s a list of the symptoms of autism as described by the CDC: 

Children or adults with ASD might:

• Not point at objects to show interest
• Not look at objects when another person points at them
• Have trouble relating to others or not have an interest in other people at all
• Avoid eye contact and want to be alone
• Have trouble relating to other people’s feelings or talking about their own
• Prefer not to be cuddled or held or might cuddle only when they want to
• Appear to be unaware when people talk to them but respond to other sounds
• Repeat or echo words or phrases said to them or repeat words or phrases in place of normal language
• Have trouble expressing their needs using typical words or motions
• Not play “pretend” games (for example, not pretend to “feed” a doll)
• Repeat actions over and over again
• Have trouble adapting when a routine changes
• Have unusual reactions to the way things smell, taste, look, feel, or sound
• Lose skills they once had (for example, stop saying words they were using)

Once again, the CDC describes autism as a list of deficits rather than encompassing all the aspects of autism. It looks at autism only as a negative condition that must be eradicated. Autism is about assets not only deficits. Let’s break down what these traits actually represent :

Children or adults with ASD (Autism spectrum “disorder”, however I would contest calling it a disorder at all. We are disabled and have a different neurological operating system. I’d suggest calling us “autistic children or adults” instead. I prefer calling it autism spectrum condition, or ASC, instead.) might:

• Not point at objects to show interest - Do we always have to point at objects to show interest? Is there really anything wrong with this? I think not. 
• Not look at objects when another person points at them - See the above. 
• Have trouble relating to others or not have an interest in other people at all - It is incorrect to assume that autistic people do not have an interest in other people simply because they have trouble relating to others. We have an interest in people, but we communicate it in our own way. 
• Avoid eye contact and want to be alone - We are not typically comfortable with eye contact (while we can make eye contact it doesn’t feel natural to us) but that does not mean that we aren’t showing interest in what you’re saying. We have our own ways of paying attention to you. Perhaps the reason why we want to be alone is so that we have time to ourselves to recover from the world of overstimulation that we experience so that we don’t go crazy. 
• Have trouble relating to other people’s feelings or talking about their own - We find it difficult to understand the many social rules set by non-autistics, and many of them don’t make sense to us. We’re afraid to show our real feelings for fear of unfair judgment.
• Prefer not to be cuddled or held, or might cuddle only when they want to - True, some autistic people don’t want to be cuddled or held because they’re very sensitive to touch, other autistic people want to cuddle or be held tightly such as myself because they’re far more receptive than average to touch.
• Appear to be unaware when people talk to them, but respond to other sounds - We may appear unaware when people talk to us, but we’re actually completely aware and will respond to you even if we’re looking away from you or not looking directly at you. We are paying attention to you. 
• Repeat or echo words or phrases said to them, or repeat words or phrases in place of normal language - I know it looks odd to non-autistics but it helps me because like other autistics, I use echolalia as a coping mechanism when I don’t know what to say. Echolalia is the repetition of words or phrases for the purpose of imitation or as a coping mechanism when struggling to produce spontaneous language. It is an excellent way to repeat sounds, words, and phrases to master them. I often repeat myself in speech and I don’t find a problem with that, as when I forget something, or get anxious or stressed, or am deep in thought, I use echolalia as a means to process the world around me. Echolalia, contrary to the dominant medical paradigm of autism (which is written by non-autistic people), is not something to worry about. It is a healthy coping mechanism that we autistic people use to understand our world since we often have difficulty with spontaneous speech. In addition, non-autistics have no right to define what “normal language” is without our input, as there is no “normal”. 
• Have trouble expressing their needs using typical words or motions - So, what exactly do you mean by “typical” words or motions? Yes we have trouble expressing our needs, but that is precisely because until recently, we autistics have not been given the proper tools or language to express what we need from others or what we need to cope with the outside world. 
• Don’t play “pretend” games (for example, don’t pretend to “feed” a doll) - We may not engage in pretend games in a way non-autistics recognize, but we can still be creative. Some of the greatest creative minds were thought to be autistic.
• Repeat actions over and over again - What exactly is wrong with repeating actions over and over again as long as it’s not a harmful activity? Nothing. Repetitive actions in autism are extremely helpful to us autistic people because we use it to cope with anxiety, stress, and transitions. I like doing repetitive things. Please do not try to pathologize us. 
• Have trouble adapting when a routine changes - While we do have trouble adapting when a routine changes, we use routines because with the chaotic, constantly changing world around us we have a sense of security and predictability. That doesn’t mean we can’t or don’t want to be spontaneous. It’s simply much more of a struggle for us but we are perfectly capable of changing our routines when it suits us. Instead of talking about how routines supposedly “harm” us, let’s examine how they help us autistics out. Routines can help reduce anxiety in autistic people by creating structure and predictability. It’s necessary in our lives because it allows us to make sure certain things get done. This is especially helpful for autistic adults as we have to deal with all the struggles of being an adult only to have autism to deal with on top of all of that. Routines help us lessen our cognitive load because we struggle with making choices and prefer to be decisive so that we don’t have to struggle with that. A change to routine is highly stressful for us because we cannot just suddenly change. We have to plan in advance for that change and then ease ourselves into embracing and making that change just to make that change. This is why we struggle with spontaneity. 
• Have unusual reactions to the way things smell, taste, look, feel, or sound - From my perspective my autistic reactions to the way things smell, taste, look, feel, and sound are completely normal and non-autistics have unusual reactions to those things because they don’t experience them as powerfully as I do. Honestly, whose definition of unusual is right? Yours or mine? Actually it’s neither. Every person has different reactions and every person has a different sensory processing. 
• Lose skills they once had (for example, stop saying words they were using) - Autistic regression is a complication that some autistic people experience when they are unable to meet life’s demands. Autistic regression is also known as autistic burnout. More information about the autistic burnout can be found in this article by Autism Wiki on autistic regression. The warning signs that commonly happen in autistic regression are more frequent or intense meltdowns, appearing to lack motivation, becoming less self-reliant, and seeming more openly autistic (as in they lose their social facade that they have to put on in front of neurotypical people). It can be sudden or gradual and it often can cause undiagnosed autistic people to seek out a diagnosis. Many autistic people can hide the fact that they’re burning out because they are so used to putting up a social mask that hides their real feelings.

As of today I still have many of these traits and honestly I’m okay with that. I like being autistic. I like being unapologetically me. I sometimes look away when people talk to me or I  pause for too long, think slowly, and don’t detect when someone is joking or being sarcastic. I also do like to have a very strict routine in certain areas in my life and hate deviance from those routines because it gives me tremendous anxiety. I also have problems with being both able to flirt and being able to tell when someone is flirting, in addition to not being able to detect boundaries or hints related to those. 

I also have tunnel vision, which is a common symptom, and sometimes need to work on my peripheral vision. It’s difficult because I have to make a conscious effort to look out of my peripheral vision. One of the great things about tunnel vision is that I get to hyper focus on the things I want to get done! I am working every day to improve my daily and situational awareness. 

I have communication difficulties, social difficulties, and sensory difficulties, and those are things that I accept that I’m going to deal with for the rest of my life. It’s part of the autistic experience. To those who say that autistic people can never be normal, act normally, or function normally in everyday society, I’m proof that you’re all wrong. To those people that say that autistic people are incapable of seeing from other people’s perspectives, from feeling empathy, you have once again been proven wrong on account of my existence. We can be normal but we can’t be non-autistic. Well, what exactly is normal anyway? Normal is such a strange word. 

No one is really normal. We’re all deluded by the conformist pressures of mainstream culture and society to think that there is a “normal” existence, a “normal” state of being to strive for. I say we are all different, weird, quirky, and we are pressured to act in a normal way when in fact none of us have it in our DNA to be the exact same way. The book Way of the Peaceful Warrior says “Everyone tells you what’s good for you. They don’t want you to find your own answers. They want you to believe theirs.” That’s what it’s like EVERY DAY for an autistic person. People believe that people on the autism spectrum are incapable of making their own decisions and need to be constantly sheltered or spoken for. They need to recognize that autistic people, regardless of how much help they may need, should be able to communicate their own needs whether through speaking or if they can’t speak, through writing or sign language.

Conclusion: We discussed how autism is defined by traditional pathology-centered medicine, referred to by Dr. Nick Walker as the pathology paradigm, and how it is defined by the autistic community. Autism is defined in an extraordinary rigid manner as a set of deficits by the pathology paradigm whereas from the perspective of the autistic community autism has a much more fluid range of traits, positive, negative, and neutral, and the autistic community is seen as fully-realized human beings to be treated with dignity, empathy, and respect, no matter their level of impairment. Several myths about the traits of autism were dispelled with counterpoints, primarily anecdotal, but valid nevertheless. Finally it is emphasized that no one is really “normal” by society’s definition of that word. 

If you have questions, comments, and suggestions for me make sure to let me know. I’m looking to do what I can to continue my research on autism and neurodiversity (which has been completely independent thus far) and thus I want to become the best researcher I possibly can in order to advocate for the equal rights of autistic and neurodivergent people as a whole. Thank you very much for all of your help and support!