Abstract  

This study is guided by a central research question: How does institutional language used to describe autism shape the interpretation and treatment of autistic individuals within clinical, educational, and everyday contexts? To address this question, the study has three objectives. First, it examines how autism has been historically constructed through diagnostic and institutional discourse. Second, it analyzes how these linguistic frameworks are encountered and enacted in lived experience. Third, it explores how deficit-based language is challenged through community-led discourse and linguistic resistance. 

The scope of this analysis is focused on Western institutional contexts, with particular attention to services and systems operating within Central Alberta, Canada. While broader theoretical frameworks are drawn from interdisciplinary scholarship, the empirical analysis centers on localized discourse and lived experience within these settings. This research argues that diagnostic and institutional terminology, particularly clinical language embedded in assesssment reports, therapeutic discourse, and policy frameworks, functions not as neutral description but as a mechanism of social regulation. These linguistic practices influence how autistic people are interpreted, responded to, and positioned within systems that structure daily life. 

While there is no single universal model through which autism is understood or addressed, dominant frameworks, particularly those developed within Western institutional contexts, circulate widely and shape diagnostic practices, professional discourse, and service provision across diverse settings. Deficit-oriented language operates as a mechanism of power that reinforces normative standards and produces material consequences. This paper contributes to emerging interdisciplinary scholarship by examining how the linguistic framing of autism shapes both social structures and how autistic individuals are interpreted and positioned within them. 

Introduction  

Autism is defined not only by diagnostic criteria or clinical assessment, but also by the language that circulates around it. Terms such as “disorder,” “impairment,” “risk,” and “functioning” appear across clinical reports, educational planning, and everyday discourse, shaping how autistic individuals are interpreted and positioned within social life through frameworks that have been shown to carry material and ideological consequences (Botha et al., 2021; Bottema-Beutel et al., 2021). 

Recent research examining the perspectives of neurodivergent adults highlights the central role that language plays in shaping both interpretation and social experience. In a large-scale UK survey, participants described how terminology such as “neurodivergent,” “neurodiversity,” and diagnostic labels could simultaneously reduce stigma while also reinforcing misunderstanding or exclusion, depending on how these terms were used (Grant et al., 2025). The findings demonstrate that language is not experienced as neutral; rather, it is closely tied to how individuals are understood and responded to by others. Medicalized terminology, including diagnostic labels and deficit-based descriptors, was identified as particularly influential, often shaping expectations around behaviour, intervention, and social participation. 

These linguistic frameworks do not remain confined to institutional contexts. In my experience, they permeate everyday interactions, shaping how autistic people are seen in public spaces, how their behaviour is interpreted by others, and how expectations are formed about what they should be able to do. Language becomes operational. It influences how quickly behaviour is judged, how support is offered or withheld, and how individuals are positioned within social environments. 

This study begins by examining dominant patterns in how autism is described within institutional and cultural discourse. It then turns to how these linguistic patterns are encountered in lived experience. Finally, it considers how these frameworks are challenged and reworked, situating these practices within broader discussions of language, power, and social meaning. 

To ground this analysis in lived experience, the following narrative, Holding the Thread, is positioned at the threshold of this work. Rather than functioning as illustrative anecdote, it serves as an epistemological entry point, foregrounding how language is encountered, embodied, and interpreted within everyday life. In doing so, it reflects the methodological commitments of this study, which integrates autoethnographic insight with critical discourse analysis. Beginning here signals that the questions guiding this research do not emerge solely from abstract inquiry, but from sustained engagement with the material realities shaped by language in institutional and social contexts. 

 

 

 

Holding the Thread 

At three in the morning, the house is quiet in a way that feels heavy rather than calm. The furnace kicks in with a boom that keeps me company while I stand in the kitchen and wait for the coffee to percolate. I listen to her breathing through a half-open door. I know her breath is ordinary, and yet, I check again. I look at the clock and do mental arithmetic for the day ahead. I can get four hours if I go back to bed now. I know I am not returning to bed, and I pour the coffee. Wrapping my hands around the mug, and already, my brain has too many tabs open. The echoing thought I have each day at around this time, as though three in the morning is a sacred time to allow myself thoughts, I am afraid of. I am scared of the future. I can picture her at forty, and it is a picture that does not include me there to answer questions or to steady a day that goes sideways for reasons other people cannot fathom. In the stillness of this time, I admit that some nights I do not want to be needed. The thought comes and goes like the shadow of a cloud crossing the moon. I wonder if I have allowed these thoughts to define me and everything I do with my own existence. Drinking coffee, I languish in silence for a moment. This is my favourite part of the day. When nobody needs anything from me.  

Morning is a test of tone more than time. I wake her in the softest part of the day and speak in a soothing voice that does not push. We move through a routine that looks simple on paper but asks everything of two people who are still half asleep. Socks are negotiated like peace treaties. The kitchen light hums in a way I cannot hear until she flinches, and then I hear it everywhere. I change the bulb. I set the bowl on the left side of the table rather than the right because we learned the left side lets the day begin without a fight. I tell myself that this is not a superstition. These rigid particulars are respect for a nervous system that registers details before all else. When her spoon scrapes at the bottom of the bowl, I feel my shoulders drop. I clean the counter while she reads the back of the cereal box and recites a line that makes her smile. I smile back, and it feels like a small door opens. The door will stay open if I do not rush it. I want to hurry because I am already late for work, but I have learned what hurrying costs. Hurrying buys me five minutes now and charges me three hours later. I wait until she is ready, and when we finish with time to spare, the relief is physical. I feel it in my jaw. I feel it in my hands. I do not say this aloud because no word describes the weight that leaves the room when the first hour goes well.  

On the street, I watch a school bus turn a corner, and for a moment, I feel a sting that I do not have an immediate word for. It is not envy or grief. It is a brief ache for a life that is predictable to the point of boredom. I used to believe boredom was an insult. Now I hold it up to the light, the way people hold up a hologram on a fifty-dollar note to see if it is authentic. I do not want someone else’s life. I want a version of mine that has fewer hard edges. My daughter cannot attend school. The system is not designed to hold her safely. I covet the lives of the parents of the children on that school bus chugging out of view. That thought sits beside another that I keep to myself. I let the thought exist, so it does not become something larger. I write a note to myself to buy more of the cereal she ate without flinching. I have learned to treat these details with the respect they deserve. They are not small. They are the architecture of a day that cannot hold any errors.  

Work exists because it must be, and I am good at it because being good is what keeps the lights on. I answer emails with precision and leave meetings on time because time is an instrument, and I know how to play it. My colleagues see someone who is efficient, and that is true. They see an experienced woman who is fantastic at making others laugh and feel at ease. They do not know the part where I sit in the bathroom stall and press my fingertips against my eyelids, because the light in the conference room hummed and my nervous system panicked, a response I have learned to be on guard for. I outperform my colleagues because I fear losing income more than those with two people contributing to bill payments. I leave on time because I must. I work from home wherever possible. I throw myself into my immediate tasks and practice complete focus. I cannot afford distractions.  

On a day when we try the supermarket again, I plan like a strategist. The tiles are bright, the music is low, and the aisles are thin. We last longer than we did the last time. There is a moment when I sense her dysregulation. She starts to complain in a loud, whiny voice. A woman nearby watches with a face I am all too familiar with. I feel heat rise in me that I first name as anger and then understand as shame. I do not like to admit that feeling. Shame announces itself when it meets other people’s expectations. I do not have to carry it. I remind myself that this is not a performance for the sake of other people’s comfort. It is my life. We reach the check-out, and I feel like I have crossed a quiet finish line that no one else sees.  

My body is exhausted, and my nerves are frayed. At the door, a child cries in a sharp, piercing voice that slices through the air. I get the keys ready without looking, we reach the car, and she sits and covers her ears. I breathe with her until the sound is gone. Her shoulders drop. Mine drop too. In the mirror, I catch my own face, pale, and set, and I am surprised by how tired I look. I have aged so clearly in the last few years. I do not soften the feeling with a story about gratitude for ageing. I let tiredness exist as a fact on my face, and we go home.  

In the evening, I try to read a book that requires concentration. The first page is clear, and then the words turn into a pattern I cannot hold. I want to be the kind of woman who always has a chapter ready to discuss, yet the truth is my mind is drawn to a different curriculum. I study the weather across her face and the speed of her breath. I read the energy in the house the way other people read novels. I could pretend this is a noble super-power. It is not. It is survival, and sometimes it is tedious, and sometimes it is beautiful, and often it is both in the same ten minutes. When she lies on the floor and arranges objects by size, I lie beside her and match her rhythm, feel the floorboards against my shoulder, and remember the person I was before I learned how much a daily sequence matters. I was wild and carefree with time. I do not judge that younger woman. I miss her for a moment, but I let her go.  

There is a part of this story I avoid because it complicates the tidy idea that love is always enough. There are days when I resent the version of myself that has become necessary. I resent the patience I must produce on demand. I have learned to use the smile I have in advocacy meetings, so I do not become the problem story in the room. I resent the fact that my body knows how to absorb someone else’s distress and turn it into a calm face when what I want is for the ground to open and swallow me whole. The resentment lasts minutes rather than hours because there is no time for it to linger, and it is followed by something like respect for the bond's durability, which pulls me back to center. I apologize to her when I get sharp and react to her moods on instinct rather than with measured, strategic care. I apologize without explaining. I say I am sorry, and I try again. It is not romantic. It is a skill I practice. It has become one of our strongest tools.  

People talk about isolation as if it were only a lack of company. The isolation that lives in this house is in a different shape. It is the distance between what we live and what others think we live. It is the silence that follows a message I send when I cannot attend an invite or a plan someone else has chosen, because the timing would disrupt our day. It is the group chat that moves forward without me, and the photo of five women at a table that used to have room for me, too. I am not angry at them. I am envious of their capacity to say yes without doing the calculus. I mute the chat because I cannot hold their ease and my effort in the same hand. I tell myself I will unmute it when I have more sleep. Weeks pass. I do not unmute it. I meet one friend for coffee once a month because she does not need a performance from me. We sit and talk plainly about money and sleep and the strange ways our bodies keep score. When I leave, I feel more like myself. It lasts for the afternoon, and then the house absorbs me again. I no longer fight that absorption. Fighting it could make me bitter. Accepting it makes me durable.  

Evening is when I feel the contradiction most clearly. I want quiet and connection. I want help, and I want to be left alone. At times, I would like to be held, though I do not want anyone to ask me for anything. I make dinner because dinner keeps the evening moving, and movement is what keeps the mind from turning on itself. We eat the simplest thing that will fill us without causing sensory overload. She sits on the couch and reads aloud. I listen from the kitchen and answer with a line when she pauses. Our private call-and-response keeps us both steady. After food, we try a stretch of learning, and it goes well. I praise the work without turning it into a performance. I have learned that praise is a fine instrument. If I use it often, it keeps the air warm.  

At night, when the house is finally quiet again, I sometimes open a dating app and scroll without intention. I practice the thought experiment of a life that has room for another person. I imagine the sound of a second adult moving in the kitchen, the heat of another back beside mine, the ordinary intimacy of someone asking if I want tea. The imagination is both gentle and dangerous. It asks me to picture a trust I do not have time to build. I delete the app and feel relieved. I want tenderness more than romance. I want someone to hold the list while I wipe the table. There is no app for that. I turn off the phone and sit with the disappointment in myself that I had allowed myself to fantasize about a life that does not exist. 

There are nights when I argue with a version of myself that appears when I am most tired. This version of me says I am not doing enough. She reminds me of the day I lost my patience for a moment, or the messages I did not answer. She has an inventory of my failures, and she can recite them from memory. I have developed counter practice. I speak aloud and say one true thing that balances the critics’ ledger. Today I kept my voice level when it counted. Today I made a call I did not want to make. Today I laughed with her, and it was not forced. I do not pretend this fixes the fear that keeps returning. It gives me a foothold. Each grounded step can feel like a marathon.   

There is a more profound truth I do not want to close with, but honesty requires it. I am more than this role, but do not feel like more than this role most days. The world tells me to find myself in small ways. Go for a run. Join a class. Make time for me. I do not need slogans. I need a life that recognizes how care compresses a person and does not demand that she decorate the compression with positivity. I used to think that if I told the truth about the weight of this life, others would see me as ungrateful or harsh. I no longer carry that fear. The truth is the only thing that allows me to move. The truth is that I love my daughter, and I often feel alone. The truth is that I want a different system, and I have the life I have. The truth is that some days I am proud of who I have become, and some days I want to leave my own body so I can rest. The truth is that both sets of sentences can sit beside each other and neither cancels the other.  

Before bed, I stand in the doorway and watch her sleep. The streetlight lights the room, and the soft glow turns the bookshelf into a shadow that looks almost like a person standing guard. I know it is only a trick of light, but I accept the comfort. I return to the kitchen and write three lines in a notebook. I record one thing that worked, one thing I would change, and one thing that surprised me. Today, the surprise was small and golden. She laughed at a line in a book that I did not know she understood. I will remember that sound when the next day asks me to prove, again, that I can hold the thread. I do not know if this is wisdom. I know it is a plan I can live with. I know I will get up, make coffee, listen to the house, check that she is breathing, and count the hours until morning. I know I will hold the thread with both hands, and it will have to be enough.  

What lies beneath these moments is not only care, but language. The words used to describe my daughter, in reports, in meetings, in passing conversations, do not remain in those spaces. They travel. They shape how I am expected to respond, how she is expected to behave, and how both of us come to understand what is possible for her life. What appears in institutional language as neutral description is felt here as pressure, as expectation, as a quiet but persistent demand to become something else. This is where the work of this thesis begins, in the recognition that language does not stay on the page, but enters the home, structures relationships, and settles into the everyday.  

 

Methodological Framework 

This study adopts a qualitative, interdisciplinary research design integrating autoethnography, critical discourse analysis, and structured literature synthesis. Critical discourse analysis functions as the primary analytical framework, guiding the examination of how language constructs, reinforces, and normalizes understandings of autism within clinical, educational, and service contexts. Autoethnography is used to trace how these discourses are encountered and enacted in everyday life, while literature synthesis situates these findings within broader interdisciplinary scholarship. 

Autoethnography is a qualitative research approach that situates personal experience within broader social, cultural, and institutional contexts (Ellis et al., 2011). In this study, autoethnographic analysis is expressed through narrative, most explicitly in Holding the Thread, and extended throughout the thesis wherever lived experience is used to interpret institutional language. These moments function analytically rather than illustratively, tracing how discourse is encountered in relational, domestic, and public contexts. This approach enables an examination of how institutional language is not only produced but lived, shaping interactions, expectations, and responses in everyday settings. 

The critical discourse analysis conducted in this study draws on principles which conceptualize discourse as a site of power through which knowledge, norms, and social hierarchies are produced and maintained. The analysis operates across three interconnected levels: (1) textual features, including word choice, terminology, and classificatory language; (2) discursive practice, examining how language is used within institutional contexts such as assessment and service provision; and (3) social practice, considering how these discourses reinforce broader systems of meaning, including norms related to ability, development, and social participation. 

Data sources for this analysis include publicly available website content from autism-related service providers in Central Alberta, including clinical, non-profit, and educational organizations, when encountered through service navigation, such as program descriptions, eligibility criteria, and informational materials directed at families. Texts were selected based on their relevance to how autism is defined, described, and operationalized within service contexts. The analysis focused on recurring terminology associated with medicalized or deficit-oriented frameworks, including “functioning,” “risk,” “on the spectrum,” and classificatory descriptors indicating levels of ability or severity. These terms were identified through both literature review and lived experience as markers of normative and hierarchical framing. 

The analytical process involved iterative close reading and manual coding of selected texts. Instances of key terms were identified, recorded, and examined in relation to their surrounding context. While frequency counts were used to identify patterns across sources, these counts function as entry points for qualitative interpretation rather than as quantitative findings in isolation. Interpretation was guided by identifying how language positioned autistic individuals in relation to normative expectations, particularly in terms of ability, behaviour, and participation. The analysis examines linguistic pattern interpretation and institutional response. 

In addition to discourse analysis and autoethnography, this study incorporates a structured synthesis of interdisciplinary literature. While not a formal statistical meta-analysis, this approach draws together research from disability studies, sociolinguistics, psychology, and critical autism studies to identify recurring patterns in how language shapes interpretation, stigma, and social positioning. This provides a foundation for interpreting both institutional discourse and lived experience, allowing points of convergence across sources to inform the analysis. 

Together, these methodological approaches allow the study to move between levels of analysis, from institutional discourse to lived experience, and from theoretical frameworks to everyday practice. This design reflects the central premise of the study: that language must be understood not only as a system of representation, but as a force that shapes how autism is interpreted, responded to, and structured within social systems. 

Language Origins  

Diagnostic understandings of autism emerged through the work of Leo Kanner and Hans Asperger. In his 1943 article “Autistic Disturbances of Affective Contact,” Kanner described autism using language emphasizing withdrawal, impairment, and deviation from expected social behaviour, framing autistic traits within a clinical narrative of abnormality (Kanner, 1943). Similarly, Asperger’s 1944 descriptions characterized autistic children as fundamentally different from normative developmental expectations, reinforcing the perception of autism as a condition requiring medical classification.  

These early diagnostic accounts contributed to recognition within psychiatric discourse while establishing linguistic patterns that continue to shape contemporary understanding. Yergeau (2018) argues that diagnostic language functions as a mechanism of power, defining the boundaries between normalcy and deviation through institutional authority (pp. 5–7). Foucault (1975/1995) describes how terms such as “disorder,” “deficit,” and “impairment” became embedded within clinical frameworks and educational policies, shaping public perceptions of neurodivergent individuals as inherently lacking or incomplete. 

 

Background of Terms. The Spectrum:  

A persistent misconception about autism is that it exists on a linear spectrum, with individuals being classified as “high-functioning” or “low-functioning.” This categorization has been widely critiqued within autism research as misleading and reductive, obscuring the complexity of autistic experience (Beardon, 2017). The reality is that autism is multidimensional, with individuals experiencing differing patterns of strengths and challenges across multiple domains. When people ask where my daughter “sits on the spectrum,” the question reflects an underlying assumption, not about her lived experience, but about how her neurology aligns with normative expectations of behaviour and productivity.  

“The spectrum” is a term originally introduced to reflect variation rather than hierarchy (Wing, 1988). However, neurodiversity scholarship emphasizes that this spectrum is not linear but multidimensional, encompassing variations in sensory processing, communication, executive functioning, emotional regulation, and cognitive profile (Milton, 2012; Walker, 2021). Autistic individuals are not located at a single fixed point on a scale; rather, their experiences shift across contexts and over time.  

The continued use of “functioning” labels reflects earlier deficit-based frameworks and reinforces what Nick Walker identifies as neuronormative assumptions about human value, in which worth is measured by conformity, independence, and economic productivity (Walker, 2021). Similarly, Luke Beardon argues that functioning labels often describe how comfortable neurotypical people feel with an autistic person, rather than accurately representing autistic experience (Beardon, 2017). 

Milton (2012) argues for understanding autism as a dynamic and multidimensional constellation rather than a ranked scale. A circular or domain-based model better reflects this complexity by illustrating that traits are distributed across areas of experience rather than ordered hierarchically. Such models shift the focus toward variation, recognizing that autistic lives cannot be reduced to linear measures of functioning. The persistence of functioning labels demonstrates how language simplifies complexity in ways that align with normative expectations.  

   

 

 

 

 

This figure illustrates the multidimensional nature of the autism spectrum, challenging reductive linear interpretations.  

 

  

Multidimensional model of the autism spectrum 

Note. Adapted from Ghumman Tech (n.d.) 

 

Background of Terms: Defining Neurodivergence   

Neurodivergence has emerged as a critical framework for understanding cognitive diversity. Rather than defining neurological differences through diagnostic criteria, the neurodiversity paradigm situates neuro-types such as Autism, attention deficit hyperactivity (ADHD), Dyslexia, and Tourette's syndrome within human variation (Singer, 1999). This shift reflects a broader transformation within disability studies that challenges the assumption that deviation from normative cognition necessarily constitutes pathology (Garland-Thomson, 1997). 

Historically, neurological differences have been interpreted through competing frameworks shaped by medical, cultural, and political forces. The medical model of disability conceptualizes disability as an individual deficit located within the body or mind, emphasizing diagnosis, treatment, and normalization (Oliver, 1990). In contrast, the social model reframes disability as arising from environmental and societal barriers that restrict participation rather than from intrinsic impairment (Shakespeare, 2013). This study builds on these frameworks by examining how these conceptual distinctions are experienced in practice. 

 

Deficit-Oriented Language in Central Alberta Autism Services 

The following section presents a localized critical discourse analysis of language used across autism-related services in Central Alberta. The analysis draws on publicly available website content from organizations including Autism Edmonton, Centre for Autism Services Alberta, Children’s Autism Services of Edmonton, Autism Centre Edmonton, Autism Alberta, the Stollery Children’s Hospital, Alberta Health Services, and Edmonton Public Schools, as well as lived experience navigating these systems. Textual data were selected based on their relevance to how autism is defined, described, and operationalized within service provision, including program descriptions, eligibility criteria, and informational materials directed at families. 

To examine how meaning is constructed through institutional discourse, representative passages were selected for close reading. These passages were chosen based on two criteria: (1) the presence of recurring terms identified in the initial keyword analysis (e.g., “functioning,” “risk,” “spectrum,” and classificatory descriptors), and (2) their role in defining or structuring access to services. Each excerpt was analyzed in relation to its linguistic framing, implied assumptions, and positioning of autistic individuals within institutional contexts. 

For example, the Edmonton Public Schools website describes eligibility for specialized programming using the phrase: “Students with moderate to severe autism who require significant support in communication and daily functioning” (Edmonton Public Schools, n.d.). This passage illustrates how classification operates through layered linguistic markers. The phrase “moderate to severe” establishes a hierarchical scale, positioning students in relation to a continuum of perceived deficit. The inclusion of “require significant support” reinforces this positioning by linking classification directly to assumed dependency. The reference to “daily functioning” invokes normative expectations about independence and competence, framing autistic difference in relation to what is expected rather than what is experienced. The passage does not simply describe need; it organizes access to services through a hierarchy that aligns support with perceived deviation from normative functioning. 

A similar pattern appears in clinical and service-oriented descriptions. The Centre for Autism Services Alberta website defines autism in part as involving: “Difficulties in communication and social relationships” (Centre for Autism Services Alberta, n.d.). While this phrasing appears clinically neutral, its structure is exclusively deficit oriented. The use of “difficulties” positions autism as a set of limitations, with no corresponding recognition of variation or difference. Communication is framed as something the autistic individual fails to achieve, rather than as a relational process shaped by differing communicative styles. The language implicitly constructs neurotypical communication as the standard against which all variation is measured, reinforcing a model in which autistic individuals are positioned as lacking. 

Risk-based discourse further demonstrates how meaning is constructed through context. On the Alberta Health Services website, autism is discussed in relation to “Children at risk for developmental delays who may require early intervention” (Alberta Health Services, n.d.).  In this passage, autism is not explicitly described as a deficit, yet it is embedded within a framework of risk and delay. The phrase “at risk” introduces an anticipatory orientation, positioning neurodivergence as something to be monitored and managed. “Developmental delays” invokes a linear model of development, reinforcing the assumption that there is a normative trajectory from which autistic children deviate. The coupling of risk with “early intervention” further implies that deviation should be addressed as early as possible, reinforcing a preventative model rather than one centered on accommodation or variation. 

These examples illustrate how the patterns identified in the broader analysis operate at the level of discourse. Terms such as “functioning,” “risk,” and classificatory descriptors do not function in isolation; they are embedded within linguistic structures that construct autism as hierarchical, deficit-oriented, and in need of intervention. The analysis involved identifying recurring terms, locating them within their textual context, and examining how surrounding language shaped their meaning and implications. 

 

 

 

Observed Frequency of Key Terms 

 

Deficit 

Functioning 

Person with Autism 

On the Spectrum 

Risk 

Autism Edmonton 

0 

0 

0 

3 

1 

Centre for Autism Services, Alberta 

1 

2 

1 

2 

2 

Children's Autism Services, Alberta 

0 

0 

0 

1 

1 

Autism Centre, Edmonton 

1 

3 

2 

1 

2 

Autism Alberta 

0 

2 

1 

1 

1 

Stollery Children’s Hospital 

1 

2 

2 

3 

3 

Alberta Health Services 

1 

3 

2 

1 

3 

Edmonton Public School Board 

0 

1 

0 

1 

0 

Total 

4 

12 

8 

14 

13 

Data derived from publicly available website content from regional autism service providers in Central Alberta (see References for full list of sources). 

Across these organizations, explicitly deficit-oriented terminology such as “deficit” appears relatively infrequently. However, the absence of overtly negative language does not indicate the absence of deficit-based discourse. Instead, medicalized and classificatory terms such as “functioning,” “on the spectrum,” and “risk” appear consistently, often embedded within descriptions of assessment, diagnosis, and service provision. 

The term “functioning,” for example, reflects a hierarchical logic that positions individuals in relation to normative expectations of independence and competence. Similarly, the phrase “on the spectrum” often functions as a reductive shorthand that collapses individualized experience into a broad diagnostic category. Risk-based language frames autism within a preventative model, positioning neurodivergence as something to be anticipated and managed. 

These patterns are not confined to written materials. I have encountered similar language in assessments, intake processes, and conversations with professionals. Terminology related to functioning, developmental expectations, and behavioural norms frequently shapes how needs are interpreted and what forms of support are offered. The language identified in this analysis is not merely representational; it is operational, structuring the conditions under which care is delivered. This often manifests as a subtle but persistent pressure toward normalization. Expectations around communication, behaviour, and social interaction are frequently framed through developmental benchmarks that align with neurotypical standards. Even when framed as support, these expectations are embedded within language that positions difference as something to be managed, accommodated, or, in some cases, reduced. These findings illustrate that deficit-oriented discourse operates not as explicit terminology, but linguistic patterns that normalize classification, comparison, and intervention. The low frequency of explicitly negative terms such as “deficit” coexists with the consistent presence of language that implicitly defines autism in relation to normative standards of functioning. 

The relationship between language and power is not abstract. It is embedded within the everyday communication practices of institutions that families rely upon for support. The consistency of these patterns across multiple independent organizations suggests that such discourse is not incidental but structural.  

Disorder to Diversity  

The expansion of diagnostic categories further intensified the medicalization of language. The Diagnostic and Statistical Manual of Mental Disorders (DSM) provided standardized terminology, yet it also reinforced deficit-based frameworks by codifying neurological difference as pathology (American Psychiatric Association, 2022). Diagnostic labels can obscure lived experiences by reducing complex identities to clinical descriptors, reinforcing what Walker (2021) describes as a “pathologizing gaze” embedded within institutional discourse. 

This tension reflects my own experience as the parent of an autistic child who cannot attend school, not because of an absence of ability, but because of the ways in which educational institutions are structured through deficit-based frameworks. Schools rely on normative assumptions embedded within everyday language: expectations to “sit still,” to “pay attention,” to “make eye contact,” and to demonstrate understanding through standardized behavioural cues. These phrases are laden with assumptions about what constitutes appropriate cognition, communication, and embodiment. Linguistic expectations do not simply describe behaviour; they prescribe conformity to a narrow model of functioning that does not account for neurodivergent ways of being. My daughter’s exclusion from school is not merely logistical, but discursive, shaped by a system in which language both reflects and reinforces institutional power. I find myself positioned in relation to an imagined norm, where participation is contingent upon linguistic and behavioural alignment. 

The shift from disorder-based frameworks toward diversity-oriented understandings represents a significant conceptual transformation. This transition emerged through decades of activism, scholarship, and community organizing that challenged dominant narratives about normalcy and competence. Judy Singer’s introduction of the term neurodiversity reframed neurological variation as analogous to biodiversity, emphasizing that cognitive differences contribute to the richness of human communities rather than representing deviations from an ideal norm (Singer, 1999). 

The rise of online communities during the 1990s played a crucial role in this transformation by enabling autistic individuals to articulate alternative narratives. Digital spaces facilitated collective meaning- making and linguistic reclamation, allowing individuals to redefine terminology in ways that reflected lived experience rather than clinical authority (Gillespie-Lynch et al., 2021). These shifts position language as a tool of political struggle, shaping both individual positioning and collective understanding. 

Nick Walker discusses how the neurodiversity paradigm distinguishes between neurological differences and the social structures that interpret differences as a deficit (Walker, 2021). Challenges experienced by neurodivergent individuals are understood as arising from interactions between diverse cognitive styles and environments designed around narrow definitions of functioning. This aligns with the disability justice movements that emphasize accessibility, agency, and self-definition as central to social inclusion (Garland-Thomson, 1997). 

The Sapir-Whorf hypothesis proposes that language influences thought by shaping attention, categorization, and interpretation (Lucy, 1992). When autism is described through identity-based or diversity-oriented terminology, it becomes linked to autonomy, culture, and community. These linguistic shifts do not merely reflect changing attitudes. They actively shape how neurodivergent individuals are understood within educational, clinical, and social contexts. 

Conceptual metaphor theory provides a framework for understanding how language shapes cognition. Johnson and Lakoff argue that metaphors are not merely rhetorical devices but fundamental structures that organize human thought (Johnson & Lakoff, 2008). Abstract concepts are understood through metaphorical mappings grounded in bodily and cultural experiences. For example, describing difference as “deficit” invokes metaphors of lack or absence, framing neurodivergence through a lens of incompleteness. 

Medicalized language often employs metaphors of malfunction, risk, or correction, reinforcing the assumption that neurodivergent individuals must be repaired or normalized. The persistence of deficit-oriented metaphors reflects broader cultural values associated with productivity and normative behaviour. 

 

 

 

Cultural Narrative  

Research in social psychology demonstrates that linguistic framing shapes collective understanding. Framing theory suggests that the words used to describe a phenomenon influence how it is interpreted (Entman, 1993). Framing autism as a tragedy or burden promotes narratives centered on cure and normalization, whereas framing it as a form of diversity encourages acceptance and accommodation. Language describing autism often oscillates between contrasting narratives of limitation and exceptionalism, reflecting broader tensions within cultural attitudes toward difference (Gillespie-Lynch et al., 2021). These shifts reflect broader tensions in cultural narratives of difference. 

This experience mirrors my own gradual retreat from social spaces, shaped by the repetition of questions rooted in misunderstanding and cultural narratives of autism. I am often asked when there will be a “cure,” or met with surprise when my daughter expresses affection, as though her capacity for connection contradicts an assumed norm. Questions such as “where does she sit on the spectrum?” reinforce the misconception that autism can be neatly categorized according to proximity to neurotypical standards. The burden of responding, of correcting, explaining, and reframing, becomes cumulative, transforming everyday conversation into a site of labour. The decision to withdraw is protective, a response to the persistent intrusion of language that misrepresents and diminishes. 

Advocacy organizations play a significant role in shaping public narratives about neurodivergence. One of the most contested examples is Autism Speaks, whose campaigns have historically framed autism through deficit-based and crisis-oriented language. Critics argue that such representations reinforce a medicalized understanding of autism as a problem to be solved rather than a form of human diversity to be understood (Neurolaunch, 2024). Large advocacy organizations often operate within fundraising frameworks that rely on emotive storytelling and crisis imagery. This can unintentionally reproduce stigmatizing discourse by foregrounding parental burden, cure-oriented agendas, or narratives of tragedy. 

The emergence of the neurodiversity movement reflects this dynamic interaction between language and social change. Activists challenge pathologizing terminology by promoting identity-first language. Language also influences internal cognition and expectation formation. Alderson-Day and Fernyhough (2015) argue that people internalize linguistic structures using internal dialogue to regulate emotion and interpret experience. 

The language individuals hear about themselves becomes embedded within internal cognitive processes. When diagnostic language emphasizes deficit, risk, or abnormality, these narratives become internalized, shaping expectations and responses, Corrigan et al. (2012) demonstrate that stigmatizing language contributes to internalized ableism, reinforcing negative self-concepts and reducing perceived agency. Recognizing the cognitive and social impact of language provides a critical foundation for analyzing the consequences of pathologizing discourse. 

 

The Double Empathy Problem and the Linguistic Construction of  Misunderstanding  

Behaviours that diverge from neurotypical norms are often read through a lens of deficiency rather than difference. In my life, this dynamic is visible in moments of public interaction, such as navigating shared spaces like supermarkets. The anticipation and interpretation of others’ reactions, glances, judgments, or discomfort are shaped by widely circulating deficit-based narratives about autism. The meaning attributed to behaviour is not produced in the moment alone but is informed by pre-existing linguistic frameworks that position autistic expression as problematic. 

The double empathy problem by Milton (2012) challenges the assumption that communication breakdowns between autistic and non-autistic individuals are the result of a unilateral deficit located within autistic people. Instead, it proposes that such breakdowns arise from a reciprocal mismatch in perception, communicative style, and social expectation. Both parties bring different frameworks of understanding to the interaction, and misunderstanding emerges from this divergence rather than from impairment alone (Milton, 2012).  

These findings challenge assumptions rooted in theory-of-mind deficit models, which have historically framed autistic individuals as limited in their capacity to infer others’ mental states (Baron-Cohen, 1995). Deficit-based language obscures this reciprocity by pre-emptively assigning communicative failure to the autistic individual. It reinforces asymmetrical expectations of adaptation, where autistic people are required to accommodate neurotypical norms without a corresponding expectation of mutual understanding.  

The double empathy problem exposes how linguistic constructions of autism shape not only how communication is understood but how responsibility for that communication is distributed. 

 

 

Digital Communities 

Davidson (2008) argues that online communities provide spaces where individuals can share narratives, experiment with terminology, and collectively redefine meaning outside traditional gatekeeping structures. Hashtags such as #ActuallyAutistic function as counter-publics that amplify marginalized voices and challenge mainstream narratives. 

Online environments facilitate the rapid dissemination of new language practices, enabling grassroots movements to influence public discourse (Gillespie-Lynch et al., 2021). These platforms allow neurodivergent individuals to articulate alternative frameworks that prioritize autonomy, accessibility, and community connection. Draaisma (2009) argues that coverage of autism often oscillates between deficit-based narratives emphasizing tragedy and celebratory portrayals of exceptional ability, leaving limited space for nuanced representations of everyday lived experience. 

Huws and Jones (2010) show that journalists rely on biomedical terminology that frames neurodivergence as a condition requiring prevention or treatment, reinforcing the perception that neurological differences are inherently problematic. Phrases such as “at risk of autism” or “preventing autism” frame neurological difference as a negative outcome to be avoided, drawing on biomedical metaphors that equate diagnosis with disease (Gernsbacher et al., 2017). Davis (1995) argues that these risk narratives reflect broader societal anxieties about productivity and conformity, positioning neurodivergence as a deviation from normative developmental trajectories. Haller and Zhang (2013) argue that disability coverage often privileges expert perspectives over lived experience, limiting self-advocates to shape public discourse. Corporate adoption of neurodiversity language risks diluting its political significance by framing inclusion primarily in economic terms (Goodley et al., 2019). 

 

Background to the Neurodivergence Movement 

The pathologizing of neurodivergence is not limited to clinical terminology or individual encounters with institutions; it is rooted in a longer history of social classification, cultural narratives, and political struggles over who has the authority to define difference. Situating this work within the emergence of the neurodivergence movement provides the necessary context for understanding how dominant forms of institutional language are contested and reworked. 

Online storytelling, linguistic reclamation, and community-led knowledge production have collectively challenged the dominance of medicalized narratives. These practices operate through shifts in representation and collective meaning-making, enabling neurodivergent individuals to redefine how autism is described and understood within public and institutional discourse. Rather than relying solely on formal advocacy structures, these forms of engagement function through dispersed, everyday practices that reshape the terms through which neurodivergence is interpreted. 

Infrapolitics, Linguistic Resistance, and the Neurodivergent Movement 

Traditional social movement theories privilege visibility and institutional organization, often overlooking forms of resistance that occur outside formal political arenas. James C. Scott (1990) conceptualizes these less visible forms of resistance as infrapolitics, describing how marginalized communities contest power through subtle, dispersed, and culturally embedded practices. He characterizes these as “hidden transcripts,” forms of expression that operate outside publicly sanctioned discourse while preserving alternative interpretations of social reality. 

In neurodivergent contexts, these forms of resistance are primarily linguistic and discursive rather than material. Everyday practices such as rejecting deficit-based terminology, reframing diagnostic labels, and producing community-based narratives function as mechanisms through which dominant interpretations are challenged. These practices do not necessarily confront institutional authority directly; instead, they reshape the terms through which autism is understood and discussed. 

The persistence of deficit-oriented terminology within clinical and institutional discourse reflects what Michel Foucault (1975/1995) identifies as the productive function of power within knowledge systems. Discourse establishes and stabilizes distinctions between normality and deviation, shaping how individuals are categorized within institutional frameworks. Diagnostic language, therefore, plays a role in structuring access to resources, support, and recognition, and reinforcing interpretations of ability and development. 

Linguistic resistance within neurodivergent communities can be observed in the widespread adoption of identity-first language. By rejecting person-first constructions such as “person with autism,” autistic self-advocates challenge the framing of autism as an external deficit and instead assert it as an integral aspect of experience. Melanie Yergeau (2018) conceptualizes this as a form of rhetorical contestation, in which dominant norms of communication and legitimacy are disrupted. Through these practices, neurodivergent individuals challenge not only specific terminology but the broader assumptions that underpin institutional interpretations of competence and agency. 

While these forms of linguistic resistance reshape cultural narratives, they do not necessarily produce immediate structural change. As Scott (1985) cautions, everyday forms of resistance may preserve autonomy and alternative interpretations without fully transforming institutional systems. The continued reliance on deficit-based diagnostic criteria, standardized developmental frameworks, and productivity-oriented models of support demonstrates the persistence of these structures. 

Understanding the neurodivergent movement requires situating linguistic resistance within a broader context of ongoing negotiation between institutional authority and community-based knowledge production. Linguistic practices function as a site through which dominant interpretations are contested, revealing how meaning is continuously produced, challenged, and redefined within contemporary disability discourse. 

Discussion 

This study examined how institutional language used to describe autism shapes the interpretation and treatment of autistic individuals across clinical, educational, and everyday contexts. The findings demonstrate that these linguistic frameworks operate not simply as descriptive tools, but as systems that organize how autism is understood, evaluated, and responded to within social and institutional settings. 

The empirical analysis revealed that deficit-oriented discourse is not primarily sustained through overtly negative terminology, but through patterns of classification, hierarchy, and normative comparison embedded within institutional language. Terms such as “functioning,” “risk,” and severity-based descriptors position autistic individuals in relation to standardized expectations of development and independence. These classifications shape access to services, guide intervention strategies, and reinforce the assumption that autistic difference should be measured against neurotypical norms. 

The close reading of institutional texts demonstrated how these patterns operate in practice. Language describing autism as involving “difficulties,” “delays,” or “support needs” consistently frames neurodivergence as deviation, even when presented in clinically neutral terms. This framing locates the source of difference within the individual, rather than within the interaction or broader social environment. As a result, interventions are frequently structured around normalization, positioning autistic individuals as requiring adjustment rather than recognizing the relational nature of communication and participation. 

Theoretical frameworks further contextualize these findings. The medical model continues to inform institutional discourse by framing autism as an individual deficit requiring intervention, while the social model challenges this by emphasizing environmental and structural barriers. However, the persistence of diagnostic and classificatory language within institutional systems suggests that deficit-based interpretations remain deeply embedded within practice. 

Milton’s (2012) double empathy framework provides a critical lens through which to interpret these dynamics. By reframing communication breakdowns as reciprocal rather than unilateral, this model challenges the assumption that autistic communication is inherently impaired. The findings of this study support this interpretation, demonstrating that institutional language often pre-emptively assigns communicative difficulty to autistic individuals, reinforcing asymmetrical expectations of adaptation. 

The autoethnographic material further illustrates how these discourses are encountered in everyday life. Institutional terminology does not remain abstract; it shapes interactions, expectations, and decisions within families and service systems. Descriptions framed through deficit frequently translate into interventions that prioritize conformity over autonomy, reinforcing normative behavioural standards as implicit goals. These experiences demonstrate how language structures not only interpretation, but the conditions under which support is offered. 

The findings highlight ongoing tensions between institutional discourse and community-based perspectives. Neurodivergent individuals and advocacy organizations challenge deficit-based language through linguistic reclamation, identity-first terminology, and alternative frameworks that emphasize variation rather than pathology. However, institutional systems often lag these shifts, resulting in conflicting narratives about autism across different contexts. 

Taken together, these findings indicate that institutional language plays a central role in shaping how autism is interpreted and responded to. While terminology may appear neutral, it operates within broader frameworks that structure expectations, guide intervention, and reinforce particular understandings of difference. Addressing these dynamics requires not only changes in terminology, but critical engagement with the assumptions embedded within institutional discourse. 

Conclusion 

This study has demonstrated that the language used to describe autism plays a significant role in shaping how autistic individuals are interpreted and responded to within institutional and everyday contexts. Through a combination of critical discourse analysis, autoethnography, and interdisciplinary literature synthesis, the research has shown that deficit-oriented frameworks are embedded not only in overt terminology, but in the classificatory and normative structures that underpin institutional discourse. 

The findings highlight that language does not operate in isolation. It is closely tied to systems of assessment, intervention, and service provision, influencing how needs are identified, how support is delivered, and how autistic individuals are positioned within social structures. Even when presented as neutral or technical, institutional language often reflects assumptions about normalcy, independence, and productivity, reinforcing expectations that prioritize conformity over variation. 

A key implication of this research is that efforts to improve outcomes for autistic individuals cannot focus solely on service provision or intervention strategies without also addressing the language that structures these systems. Shifting terminology alone is insufficient if underlying assumptions about ability, development, and value remain unchanged. Meaningful change requires a broader reconsideration of how autism is conceptualized within institutional contexts, including whose perspectives are recognized as authoritative. 

The contrast between institutional discourse and community-based perspectives further underscores the importance of including neurodivergent voices in shaping how autism is understood. Advocacy movements and autistic-led scholarship demonstrate alternative frameworks that emphasize autonomy, variation, and relational understanding. Integrating these perspectives into policy, education, and clinical practice has the potential to create more responsive and equitable systems of support. 

This research also contributes to broader discussions about the role of language in shaping social reality. The findings illustrate how linguistic frameworks influence not only representation, but the organization of social systems and the distribution of resources and opportunities. In this way, the study extends beyond autism discourse to highlight the importance of critically examining how language functions within institutional contexts more broadly. 

Future research may build on this work by examining how institutional language evolves over time, particularly in response to advocacy and policy change. Comparative studies across regions or service systems could provide further insight into how different linguistic frameworks influence practice. Additionally, research that more directly incorporates autistic perspectives through participatory or co-produced methodologies would strengthen understanding of how institutional discourse is experienced and challenged from within the community. 

Ultimately, this study demonstrates that changing the language of autism is not simply a matter of terminology, but of rethinking the frameworks through which difference is understood. Language shapes how individuals are interpreted, how support is structured, and how inclusion is imagined. Addressing the role of language within institutional systems is therefore essential to creating more equitable and responsive approaches to neurodivergence. 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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