The Intercollegiate Student Magazine

Autism and The Limits of Language

Colorful Puzzle Pieces made out of origami

“I often see barriers between us,
Impenetrable as they are wide.”

Andrew Blitman

The Difficulties of Defining Autism and Disability  

Defining Autism is hazardous. Once a disability and a subject of philosophical inquiry, Autism has become one of the mainstays in considering the nuances of neurodiversity. Neurodiversity, a term coined by Judy Singer, refers to folks who experience cognitive difference and/or brain-based disabilities. John Elder Robinson points out that neurodiversity acknowledges that conditions such as Autism and ADHD arise from a combination of genetics, biology, neuroscience, environmental interactions, as well as social and cultural contexts. Autism is not only a set of negative traits and impairments.  

To this point, Jim Sinclair’s critique of perceiving Autism a tragedy is compelling. To him, viewing Autism as something to be mourned emerges from the loss of a so-called “normal” child parents expect to have. Ideas about who is and is not normal relate to how people are sorted into varying categories of difference. In this way, how people are separated into groups and categories relates to how differences are manufactured from perceptions of disability. 

This raises questions on how to delineate what disability is. Disability can be defined as the limitations of opportunities and the ability to flourish on the basis of social and environmental contexts. This social definition of disability, though, does not fully capture the gamut of impairments many people with disabilities experience. As a term, impairments can be defined as injuries, illnesses, congenital, and/or acquired conditions likely to cause loss and disturbances in psychological or psychological functions. Impairments can also be congenital, acquired through trauma, disease, and age, as well as unstable. On the one hand, disability is an empowering identity that can be reclaimed from medicalization and stigma. On the other, it is a term complicated by the disabling factors and vast range of impairments disabled people experience.  

On the Complexities of Narratives and Language  

Describing the complexities of disability and impairment can be difficult to fully capture with language. The insufficiency of language relates to the limitations of narratives to fully account for someone’s lived experience of disability.  

While stories can provide insight on someone’s experience, narrative structures leave some details out and prioritize some stories over others. Take for instance disability narratives, where some peoples’ voices are more privileged over others. Intersectionality is addressing overlapping forms of identity-based oppression, and one way to account for the diversity of Autism experiences is through narratives and storytelling.To this end, Autism advocates and women of color such as Kayla Smith and Morénike Giwa Onaiwu, have critiqued Autism activism and neurodiversity movements for not considering race, anti-racism, and intersectionality.  

As a whole, narratives are a powerful medium to build solidarity and acknowledge difference. Stories experiment with different circumstances and can hold tensions and uncertainty. Autism narratives matter because they influence peoples’ view of Autists. They provide a mirror of self-reflection and opportunities to acknowledge variation.  

To share a personal anecdote, when it comes to sharing my experience of Autism, disability, and impairments, there’s distance between the linguistic representation of my Autism experience and how it manifests in my day-to-day life:  

Sometimes, my life feels like a carousel of managing the trifecta of Autism, anxiety, and feelings of hopelessness. In this merry-go-round, Autism traits can be fully present or fade into the background depending on circumstance. It is tiring to explain my challenges over and over and over again to obtain support and resources. It is a cycle of storytelling that will never end because I experience access fatigue in systems and institutions that don’t always see the full person.  

There’s a gap between what challenges and triumphs words can convey and what I intended to mean in writing and communications. Relatedly, there will always remain a gap between what language can convey and the limitations of narratives. Part of the vulnerability of sharing Autism narratives is in the slipperiness of language and personal stakes for Autistic writers. Identifying with and interacting with others’ Autism narratives can also be a way to foster empathy and to acknowledge the diversity of Autism experiences. At least for me, it’s often a challenge to consider the emotional risks and the benefits of being a vulnerable storyteller.  

Language, though, is an insufficient medium to fully express any Autism experience. The word has so many loopholes that they can be impossible to keep track of in a single day: 

If one day is a day chock-full of classes, meetings, and hullabaloo, during another day, I’m just fine. Another day, I can struggle to maintain my focus from having a single one on one encounter with a peer, professor, or group. Planning for social gathering or other commitments is a day-to-day affair. Even going out for more than one day at a time is a potential occasion to become overwhelmingly fatigued and exhausted for an entire week. Moments of exhaustion and heaps of anxiety come and go.  

When I am in class, it still takes a lot of energy to speak. During a social event, such as a dinner with my peers or large gathering, I feel like I am less able to enjoy others’ company because of being so unsure of what to say or do. In particular, large events and parties are the bane of my existence because I just don’t feel much enjoyment from the intensity of those types of settings.  

Considering the varying meanings of Autism is a way to reflect on my own practices and habits: 

It often feels like I navigate the world in terms of what I can and can’t control. On a personal level, thinking so much about the world in terms of what I can and can’t control has provided me with a lens to establish more healthy boundaries. As someone who gives a lot of time to advocacy, research, and simply operating as usual, I’ve been learning how to say no more often. Working with someone I trust on these issues enables me to set realistic goals and to reflect on how I appear to others in social environments. This reflection process feels like an ebb and flow of co-creating habits and lifestyle choices conducive to growing and flourishing in my doctoral program. And this way of operating in the world is not entirely predicated on Autism.  

If I describe my Autism experience too frequently, the term starts to mean as much as chewed gum that’s lost its texture and flavor. To me, the meaning of Autism can lose significance if it’s repeated too much or always used as a fallback when things feel difficult. In other terms, I am more than my Autism experience. All of these considerations underlay the varying meanings of Autism in contexts.  

The Many Colors of Autism 

There are varying implications of the term, Autism, including a developmental disability and identity. There is also the diversity of Autism manifestations, such as identity-based differences within the diagnosis. (Boys are still four times more likely to receive an Autism diagnosis than girls).  

According to the National Institute of Mental Health, Autism is a developmental and neurological disorder. Common traits of Autism include difficulty maintaining friendships, repetitive behaviors and specific interests, communication challenges, and other symptoms that affect how someone functions in their school, workplace, and other environments.  

Autism is also an identity. At least, the term can also be a way to construct one’s identity in relation to what society and culture deems “normal.” The neurodiversity movement critiques a deficit-only view of Autism by celebrating the diversity of how peoples’ brains function, to acknowledge that disability is not entirely biological or pathological. While a medical model addresses disability as something to be normalized, the social model emphasizes how a person’s social environment constructs their disability. The neurodiversity perspective posits that the diversity of minds and bodies is valuable, and that people with brain-based disabilities should be respected, accepted, and cared for in society the same as neurotypical people.  

The neurodiversity movement has also been critiqued for overlooking individuals who have severe Autism. Case in point: I can write articles, speak at academic conferences, and thrive in my doctoral program. My experience does not reflect everyone’s Autism narrative. If one Autism narrative is perceived as the norm, other forms of Autism risk being marginalized in an already-stigmatized identity category.  

Addressing stigma, shame and internalized ableism are only a few challenges of transforming neurodiversity and Autism. Such emotions can arise from feeling alienated in being misrepresented and stereotyped at the individual or collective level.  

At its worst, the medical meanings of Autism can flatten the term to its impairments and value judgments about certain types of people. Even so, the medical definition has utility. Without it, I would have not had extended time on tests and extra breaks during classes while attending high school. Without it, I would not have a word to attach to a diffuse, confusing, and sometimes painful feeling of “being different.” (I received a late Autism diagnosis at age twelve). The socially-oriented definition also holds water. That’s because it encourages everyone to think about disability and difference outside of biology, cultural expectations, and social norms. In turn, this becomes a way to consider how we should treat one another with respect for each others’ differences.  

Autism means different things depending on the context, whether that be in medial, educational, social, cultural, and narrative settings. This, then, raises questions about culture. If Autism is centered around a Western discourse of the DSM-V, what about other cultural experiences of Autism? For an example that calls for a more global view of Autism, in Mandarin, my second language, one word for Autism is ​​自闭症 (zì bì zhèng), “lonely disorder”, literally “self-enclosure disorder.” How does this change the meaning of Autism? And the meaning of one word is slippery enough in English!  

Reframing Autism  

By centering a monolithic view of what a “normal” body and mind is to frame what experiences and values are attached to Autism, we risk missing the juxtapositions of and variations within the term. We can lose focus on what the word can come to mean if we overemphasize what it means in terms of only feeling shut-out, left-out, exhausted, or stereotyped. At least to me, we also risk jettisoning and making light of lived experiences of impairment if reported hardships are entirely thrown out. In many ways, though, I am optimistic that we can continue to have dialogues and maintain a spirit of care and community without subscribing to a singular view of Autism and the function of language. 

On yet another personal note, it’s difficult enough operating in a world that has such confounding social norms and expectations. Every day opens possibilities to experience social fatigue, exhaustion, and continual anxiety about breaching my personal limits. Lived experiences of impairment matter, and my full self is to be a person with Autism. In my experience, Autism represents the reality that I have less energy to function in social interactions than my peers. However, Autism, over the years, has become an empowering term because it refers to my creativity, curiosity, and ability to give myself grace in relation to my differences.  

Sometimes, people will tell me that they wouldn’t have thought about something in a particular way until I took a social risk to share a thought or opinion. The way that I communicate makes me self-conscious, but I am an effective communicator when I feel welcome and supported. Autism can be valuable for out-of-the-box thinking, creative self-advocacy, and flipping the script of its own negative meanings.  

In a nutshell, positive traits of Autism are often overlooked. Reframing Autism requires an acknowledgement of its positive aspects.  

Reframing the stigma often associated with Autism is an empowering way to reclaim the term. Having control over definitions and meanings is part of how narratives are made in complex power structures such as ableism and other identity-based oppressions. Ableist power dynamics and practice are circumvented by disability justice and advocacy. Hence, it is important to note that language does not always equate to action, and this is one of the dangers of leaving narratives at silence and oppression.

Samantha Chipman is an English Ph.D. student at Emory University.

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