Ethnographic Perspectives of Unreliable,Minimal and Non-Speaking Autism Associated With Apraxia

Abstract

Individuals with unreliable, minimal, or non-speaking autism face significant challenges in expressing themselves. Historically, these communication difficulties have been attributed to cognitive deficits, however, emerging research suggests that apraxia, may be a primary barrier to effective communication. This study aims to explore the role of apraxia affecting speech, and how society views and supports communication. This auto-ethnographic study is informed by the lived experiences of three minimally speaking autistic individuals, highlighting the disconnect between cognitive capacity and expressive speech. The analysis resulted in the following themes: (a) apraxia as a global motor impairment and (b) disconnecting apraxia from intellectual function. This research underscores the need for adaptive communication strategies and inclusive policies that recognize intelligence and cognitive capabilities beyond verbal outputs. A shift toward understanding the impact of apraxia on communication within this population will foster more equitable access to education, health care, and social participation.

Plain Language Summary

Understanding How Movement Difficulties (Apraxia) Affect Communication in Non-Speaking Autism

Many autistic people who speak very little, or whose speech is unreliable, are often misunderstood. In the past, these communication challenges were thought to reflect low intelligence. However, new evidence shows that a motor planning condition called apraxia may be a major reason why speech does not match what a person is capable of thinking or understanding. In this study, three autistic individuals shared their lived experiences through writing. Their stories revealed two key insights: (a) apraxia affects more than just speech—it can influence many kinds of movement and (b) difficulties with speech do not mean a lack of intelligence. These findings call for a shift in how society, educators, and health care providers view and support communication. By recognizing that motor challenges, rather than intellectual limits, often explain reduced speech, we can design better supports, create fairer opportunities in schools and health care, and promote true inclusion for autistic people.

Rationale

Communication is a fundamental aspect of human interaction, shaping social relationships, and overall quality of life. For individuals with autism who experience unreliable, minimal, or non-speaking communication, significant challenges exist that hinder their ability to express themselves effectively. Historically, these communication difficulties have been attributed to cognitive impairments or a lack of linguistic competence. However, emerging research suggests that many autistic individuals experience communication barriers primarily due to motor impairments resembling apraxia (Damiao et al., 2024; Jaswal et al., 2020; Maffei et al., 2024), a condition often observed in individuals recovering from cerebrovascular accidents, commonly referred to as strokes (Graff-Radford et al., 2014). While this motor impairment is widely accepted as a common phenomenon experienced post-stroke, it has yet to be adopted by the community as the etiology of communication impairments in autistics.

Apraxia of speech (AOS) is a motor planning disorder that specifically refers to the disruption of coordination of the muscles involved in speech production, or more confusing to the public, is that the individual is able to produce speech, but not the intended words. This condition is also well-documented in post-stroke populations, where individuals struggle with articulatory precision despite intact cognitive and linguistic abilities (Ballard et al., 2014). Similarly, minimally and non-speaking autistic individuals frequently exhibit difficulties initiating, planning, and executing speech, even when assessments indicate high intelligence and intact receptive language (Chenausky et al., 2019). AOS can severely impact speech production by disrupting the precise coordination of the muscles required for articulation (Park & Kim, 2017), and recent studies indicate that such motor impairments, including AOS and other forms of apraxia, may play a significant role in the communication challenges experienced by non-speaking autistic individuals (Maffei et al., 2024). Rather than reflecting a lack of intellect or intent to communicate, these findings suggest that many autistic individuals face barriers rooted in the physical act of producing speech, challenging long-standing misconceptions about intelligence in non-speaking populations.

Growing research in augmentative and alternative communication (AAC) strategies, including speech-generating devices and letterboard-based communication methods, has provided compelling evidence that many non-speaking autistic individuals possess sophisticated language comprehension and cognitive skills, despite their limited verbal output (Chenausky et al., 2019; Ganz, 2015; Jaswal et al., 2020). Despite this evidence, traditional approaches often prioritize verbal speech or independent direct selection of icons as the primary mode of communication, sometimes overlooking the contributions of motor planning deficits. This predominant focus may inadvertently hinder access to more effective interventions that acknowledge the impact of apraxia in communication (Damiao et al., 2024). Research has highlighted the importance of integrating apraxia-centered interventions, which incorporate movement-based supports, to better address the impulse control and motor-based barriers faced by non-speaking autistic individuals (Chenausky et al., 2019; Tager-Flusberg & Kasari, 2013).

Occupational therapists, speech language pathologists, psychologists, behavioral analysts and other health care providers have worked diligently to contribute to the literature to assist this population in achieving greater levels of function, access to services, and engage in society (Hébert et al., 2014; Maksimović et al., 2023). While these providers have achieved great strides in bringing awareness to the needs of the autism community; the present authors used an ethnographic approach to describe personal perspectives of the impact of apraxia, which has been underrepresented in the literature.

Although addressing communication itself is not a typical role of occupational therapy (OT) intervention, the literature suggests OT can play a unique role within this area of practice (Hébert et al., 2014) especially when integrated through interdisciplinary approaches. Furthermore, the Occupational Therapy Practice Framework (4th ed.; American Occupational Therapy Association [AOTA], 2020) describes communication management as an occupation addressed by OTs through the process of using equipment, such as writing tools, keyboards, and communication boards, to support engagement, participation, and health, thus validating this occupation-centric perspective.

Objective

This ethnographic qualitative study aims to describe the lived experiences of unreliable, minimally, and non-speaking autistic individuals and their communication challenges, emphasizing the role of motor impairments in their expressive difficulties. Drawing on both embedded ethnographic observation and auto-ethnographic reflection, this work represents a combined effort in which the researcher’s own lived perspectives play a critical role in illuminating a complex and often misunderstood phenomena. By examining personal narratives and interactions, this research seeks to challenge conventional assumptions about non-speaking autism and highlight the need for more inclusive and adaptive communication interventions. Through a deeper understanding of these individuals’ experiences, this auto-ethnographic perspective argues for more effective support systems that honor cognitive capabilities while acknowledging the motor-based barriers faced in self-expression.

Method

This study employs both an embedded and auto-ethnographic approach to explore the lived experiences of individuals with unreliable, minimally, and non-speaking autism. Embedded ethnography is a qualitative research methodology in which researchers immerse themselves in the culture and experiences of the study participants, allowing for a deep and nuanced understanding of their perspectives; while auto-ethnography provides an author’s unique personal perspective of the subject matter (Hammersley & Atkinson, 2019). Thus, this study is distinctive in that it integrates auto-ethnographic experiences of three self-advocates as well as an embedded ethnographic description of occupational therapists specializing in alternative and augmentative communication (AAC) with this population. The collaboration between self-advocates and professionals ensures that the study remains both methodologically rigorous and deeply authentic in capturing the lived realities of non-speaking autistic individuals.

Participants and Researcher Positionality

The research team consists of:

1. Three self-advocate authors with non-speaking autism who contribute their lived experiences and perspectives on communication challenges, as associated with apraxia.

2. An OT practitioner with 23 years of experience specializing in text-based AAC and assistive technology, providing a professional framework for understanding communication interventions.

3. An academic occupational therapist with 25 years of experience in assistive technology, and 14 years of experience in research methodology, ensuring methodological integrity of the ethnographic process.

Data Gathering

This insider–outsider dynamic within the research team allows for a balanced approach that combines firsthand experiential knowledge with scholarly analysis. The self-advocates serve as both participants and co-researchers, ensuring that their narratives and insights remain at the forefront of the study. The OT practitioner has worked with this group of authors/self-advocates providing OT services to facilitate communication through AAC methods for the following timeframes: Jake, 5 years; Jonathan, 4 years; and Maude, 6 years. Throughout this time, it became increasingly clear through these communications that these autistics had much higher levels of cognition than what was determined from traditional assessments. While time-consuming and often cumbersome, their written communication through the use of AAC provided a vastly different representation to the verbal communication and often physical behaviors expressed.

The primary data sources were written narratives produced by the self-advocates, which were elicited through prompts posed by the OT practitioner during AAC-supported communication sessions. A recurring version of the following guiding question was used: “Your verbalizations and physical behaviors often appear to contradict or misalign with your written communication . . . Is this alternative form of communication helpful to you? . . . And if so, why?” These prompts encouraged the self-advocates to reflect on the challenges they experienced in daily life, including communication, social interaction, and functional tasks. Responses to these prompts were developed through weekly writing, most often in the form of unstructured journals. In this study, the terms narratives and journals are used interchangeably, as the journal writing process was the method by which self-advocate narratives were created.

The OT practitioner also maintained documentation throughout the process. Brief session memos were written after each clinical or research interaction and were subsequently expanded into field notes. These field notes captured the practitioner’s ethnographic reflections on AAC use, communication barriers, and broader contextual observations. Together, the self-advocate narratives and the OT’s field notes provided complementary perspectives on the communication experiences of minimally speaking autistic individuals.

Data Analysis

The study adopted a collaborative ethnographic framework that integrated auto-ethnographic narratives from self-advocates with ethnographic insights from the OT practitioner. This approach foregrounded lived experience while situating it within clinical and scholarly contexts.

Data analysis proceeded through the following steps:

1. Familiarization. All members of the research team—including the self-advocates, OT practitioner, and academic researcher—independently reviewed the compiled narratives and OT field notes to develop an initial understanding of the content.

2. Coding and theming. Team members generated initial codes, which were then compared and refined through collaborative discussion to reach consensus. Codes were organized around key patterns, such as communication challenges, motor impairments, and societal perceptions of cognitive capacity. From this process, two central themes were developed: (a) apraxia as a global motor impairment and (b) the disconnect between apraxia and intellectual function, highlighting the need for a paradigm shift in communication supports. These themes were illustrated using excerpts written directly by the self-advocates to ensure their perspectives remained central (Braun & Clarke, 2006).

3. Integration of OT insights. The OT practitioner’s ethnographic reflections were interwoven into the analysis by contextualizing the narratives with clinical observations documented in field notes. This process ensured that professional perspectives enriched, but did not overshadow, the voices of the self-advocates.

4. Member checking. Drafts of the themes and manuscript sections were shared with the self-advocates, who reviewed, revised, and approved their contributions. This process enhanced the credibility and trustworthiness of the findings (Creswell & Miller, 2000).

Ethical Considerations

To mitigate power dynamics inherent in mixed teams, we adopted a participatory stance, where the occupational therapist acted as facilitator rather than director of interpretation. All conclusions and analytic decisions were reached through mutual agreement. Given the participatory nature of this study, ethical considerations were prioritized, including (a) informed consent, (b) respect for autonomy, and (c) confidentiality. Regarding confidentiality, while the self-advocates chose to use their names, all data were handled with respect and sensitivity to ensure their comfort and dignity. The study was approved by the Pace co University IRB.

Results

This qualitative analysis of the self-advocate written communications resulted in the following themes: (a) apraxia as a global motor impairment and (b) the disconnect between apraxia and intellectual function. These themes are elaborated upon regarding the personal perspectives of the self-advocates in relation to how apraxia impacts their capacity to engage in occupations, such as speaking and communicating, as well as how it impacts their perceived intellect within their communities. The themes are described in a collective self-advocate first-person voice in the following auto-ethnographic group discourse section and then elaborated upon through the singular self-advocate voice in the auto-ethnographic individual discourse section.

Auto-Ethnographic Group Discourse

Apraxia as a Global Motor Impairment

As self-advocates we wish to express the immense challenges that we have faced living as autistics with speech impairments. This has been a life fraught with misunderstanding and presumed incompetence, as a result of the disconnect between cognition and motor function, leaving us to struggle with managing an uncooperative physical body when it comes to completing complex motor tasks, such as turning thoughts into words and into oral motor patterns that produce speech. For some of us, we appear to engage in speech phrases that are automatic and reflexive, similar to a “nervous tick” or a compulsive behavior pattern. This appears to suggest or reflect a gap in the neural pathway between premotor cortex cognitive processes and more dominant cerebellar motor patterns as suggested in recent literature (Gibson et al., 2022).

For some of us, the production of speech is not possible at all. This in some ways can be a boon, as any communication that we engage with through written form is typically received by the other party and met with greater receptivity, than those with partial speech, as there is no other form by which we can communicate. However, for individuals with some speech, albeit reflexive or scripted, it is often received by the other party with the same level or greater perceived validity as what is communicated via written form. This is unfortunate, as we are capable of communication at a much more intellectual level through written form particularly through assisted communication (AC) techniques and technologies.

Disconnecting Apraxia From Intellectual Function

For both minimally and non-speaking autistics, speech impairments are problematic as the general community have come to accept speaking as a marker of intelligence. However, it is this false assumption that critically impacts our ability to participate within the community, engage in discourse, and be seen by our peers as valuable members of society.

The community of health care professionals working within the autism landscape has come to accept sensory processing, modulation, and regulation, as commonly occurring phenomena that impacts behavioral regulation. However, despite the neurological foundation that sensory processing is an internal process not objectively perceptible to the outside observer, as a community we tend to make greater accommodations and assumptions of competence, as we do not automatically correlate sensory processing to intellectual capacity. Contrarily, this cannot be said for motor function impairments, the basis for which our diagnostic system readily interprets intelligence. If non-speaking individuals are provided a battery of non-verbal assessments to determine intellectual capacity, in many cases, these methods consist of a motor component, whether it be through complex physical gestures or other physical skills. However, the medical professional rarely separates the impact of apraxia from intellectual function (Maynard & Turowetz, 2017).

On the surface, this point may seem justified since an individual with severe motor impairments will struggle to participate in many or most realms of daily activities. However, we argue from personal experience that the old paradigm of assuming motor challenges as correlated to intellectual capacity must be challenged, in favor of shifting toward a model of presumed competence, while continuing to develop interventions and technologies that increase engagement in occupations.

All three self-advocates as authors of the present study have experienced these themes with significant impact on their early development, education, and social opportunities. As young children, we have been mis-diagnosed as intellectually delayed based on traditional assessment methods. However, shortly after beginning alternative forms of communication we have all been reassessed, leading to a reversal of the original misdiagnosis, which has ultimately led to our enhanced engagement in occupations, such as high school/college students, self-advocates, and speakers/lecturers.

Auto-Ethnographic Individual Discourse

Jonathan

I spent most of my life with the world not knowing I had cognitive capacities. They thought I was unaware and that I could not understand. I longed for people around me to know the thoughts in my head, but instead I answered myself.

I was alone in this world. This is how I lived for many years. However, through AAC typing methods I can finally share my thoughts, feelings, and beliefs. I now feel understood everyday . . . and this experience taken for granted by the un-impaired speech community is one which must be illuminated humanity-wide if practitioners are to engage with the impaired speech autism community as ethical client-centered providers.

I might be able to express these thoughts now through AAC typing methods, but prior to that, I thought of myself as being an individual locked in a prison. My goal now as a self-advocate is to bring awareness to this phenomenon and open a dialogue with this community to expand assumptions of cognitive functions, despite physical limitations.

Jake

While not well understood by the medical community, it is my autism and motor planning that challenge me in my ability to communicate verbally. While I am able to speak orally, the words do not reflect my thoughts. These vocalizations consist of a small repertoire of words akin to an impulsive or reflexive response to what is occurring around me; not what I am intending, or the full extent of my thinking capacity. Unlike how the world perceives me when I speak, I am an intelligent person as evidenced through my typing and my high achieving academic performance as a college student.

As a self-advocate, I seek to expand this understanding to a greater community in hopes of educating the educators and practitioners of other individuals living with similar experiences. Each person deserves the same opportunity afforded me, whether it be typing, or whatever intervention serves the capacity to engage in a greater discourse of knowledge and demonstration of intellectual functioning. It is this freedom from the many environmental, societal, and systematic obstacles that allow us to achieve self-actualization.

Clearly, these obstacles that I experience as an individual with autism are both internal and external, but so much of the challenges I have faced result from the lack of understanding of the true nature of my disability.

Maudey

Similarly to what Jonathan and Jake have described . . . I type to communicate, otherwise my thoughts and feelings would be trapped in me. From my perspective, autism is not an intellectual disorder; but one of sensory processing. We experience the world differently, but we feel the same feelings that everyone else does. Care-partners and providers should “handle” us with high expectations and an assumption that we can meet goals and strengthen our abilities.

Clearly, communication is critical; without it I felt lost and helpless in a world that was not endurable. We must continue to develop innovative interventions and expand access to existing ones that facilitate true communication to all individuals with speaking challenges regardless of diagnosis. But most importantly, the community needs to create a new baseline assumption that there is more going on inside the minds of individuals with autism than they would imagine. Autistics are thinking on profound levels, and expanding strategies to communicate, such as typing (AAC), is life-changing.

Discussion

Based on these results, this enhanced understanding of the impact of motor impairments in autistic communication challenges necessitates a paradigm shift in therapeutic interventions. Rather than presuming an inherent intellectual deficit, interventions should accommodate motor planning difficulties and presume competence (Kasari, Brady, et al., 2014; Kasari, Kaiser, et al., 2014). Typically, cognitive function assessments designed for non-speaking individuals rely on precise and complex motor responses, which raise concerns about their validity when apraxia is present (Braconnier & Siper, 2021). Historically, therapeutic and educational models have focused on speech production as a primary indicator of cognitive and communicative ability, often overlooking the possibility that motor difficulties, rather than linguistic deficits, may be the primary barrier to expressive communication (Torres & Donnellan, 2015).

This prevailing paradigm is deeply rooted in the broader societal valuation of individuals based on their measurable contributions, typically through speech or motor-related outputs. Contemporary educational and occupational systems prioritize productivity, often equating verbal fluency and physical execution with intelligence and capability (Biklen, 2005). This perspective has shaped the conventional understanding of competence, favoring those who can articulate their thoughts verbally or demonstrate abilities through observable actions. However, emerging research in addition to the current ethnographic perspectives suggests that autistic individuals with limited verbal output may still possess sophisticated cognitive abilities that remain obscured by motor and sensory challenges (Heasman & Gillespie, 2019).

The evolution of assistive technologies, including eye-tracking communication devices, brain–computer interfaces, and artificial intelligence-driven adaptive learning tools, has the potential to redefine how individuals contribute to society. These technologies may shift the emphasis from physically derived outputs to intellectual and creative contributions that do not rely on traditional speech or motor functions. This prospect challenges existing social and institutional frameworks, which are heavily reliant on verbal and written communication as the primary modes of expression. If society moves toward recognizing and valuing thought processes over physical output, the criteria for assessing intelligence and competence may become more inclusive and representative of a broader spectrum of human ability.

As a result, this paradigm shift presents a significant challenge for educational and medical systems, as it disrupts established models of assessment and intervention. Educational institutions may struggle to accommodate this shift, as traditional measures of academic ability, such as standardized testing and classroom participation, rely on observable behaviors. Moreover, teachers and support staff, who are trained to assess student engagement based on conventional indicators, may find it difficult to reconcile presumed competence with an apparent lack of demonstrable intellectual function. Thus, the current findings highlight that presuming cognitive competence in students with significant motor or speech impairments necessitates increased resource allocation, including specialized training for educators, adaptive curriculum development, and alternative communication methods.

Furthermore, this shift raises critical ethical and policy considerations. If society begins to acknowledge and accommodate non-traditional modes of communication, there will eventually be opportunities for reformation of disability rights, accessibility legislation, and the allocation of educational and therapeutic resources. Institutions must consider how to equitably support individuals with autism and other neurodivergent populations without reinforcing existing biases that favor those who can most easily conform to traditional communication norms (Mottron, 2011).

Advocacy (Auto-Ethnographic Group Discourse)

The primary purpose of this writing was to shed light on the often-overlooked impact of apraxia on speech production in autistic individuals, with the goal of increasing awareness within the broader community. As self-advocates, we have committed ourselves to this work—sharing our experiences with practitioners and graduate students, presenting at universities and conferences, and engaging with our communities. Through this writing, we also wish to describe the interventions and support systems that have enabled us to participate meaningfully in this discourse, contributing to conversations that shape understanding and practice.

Despite some differences, our individual journeys as self-advocates share many commonalities. For most of our childhood and adolescent years, we had limited ability to communicate, which often led teachers, peers, and even family members to assume we had severe cognitive impairments. Yet, each of us had one unwavering advocate—a parent, teacher, or therapist—who believed in our underlying intellectual capacities. These individuals were determined to find support and solutions that would help foster greater autonomy and social connection. That support came through a form of AAC known as AC, including specific approaches, such as facilitated communication (FC), rapid prompting method (RPM), or spelling to communicate (S2C).

Specifically, the present self-advocates use FC, which is a method that acknowledges the sensory processing challenges we experience. This method typically incorporates the use of a keyboard or tablet device in which the “typer” reaches out to the keyboard while the communication partner provides resistance at the upper extremity to ground and organize the otherwise impulsive or apraxic movements. Our family members were fortunate to find experienced and skilled practitioners in FC who have been able to incorporate this method, and over time reduce the amount of support needed.

While our intent is not to promote any specific treatment or method, we do acknowledge the vital role that AC has played in our capacity to engage socially, and strongly urge health care providers, care partners, and advocates to seek out all potential technologies and techniques through experienced communication practitioners, regardless of perceived capacities.

Expanding the scope of communication interventions beyond traditional therapies to include approaches that address motor control difficulties may offer non-speaking autistics more effective pathways to self-expression. By recognizing the complex interplay between motor function and communication, clinicians and educators can develop more tailored, evidence-based strategies to support the diverse needs of autistic individuals.

Limitations

While the present writing is grounded in evidence from the literature and valid in its intended purpose of providing an ethnographic perspective, it is not intended to imply that the findings from this study alone should lead to broad practice recommendations. Neither is our intent to provide a prescription or endorsement of specific treatment options. Rather, the present writing emphasizes the need to develop more accurate assessments and treatment protocols that better ascertain the presence of apraxia at the individual level to reduce the impact this neurological condition may have on functional capacities in this population.

Furthermore, while the insider–outsider research team structure strengthens authenticity, it may also introduce interpretive bias. The close relationships between participants and researchers, particularly the OT’s dual role as practitioner and co-author, may have influenced data interpretation, although all efforts have been made to remain reflexive and objective throughout this process.

Finally, this study relies heavily on narrative and qualitative data without integrating formal assessments to measure motor or language impairments. While the focus is intentionally ethnographic, the absence of standardized data makes it difficult to quantify the severity or nature of apraxia, or to contrast these observations with traditional clinical markers. Auto-ethnographic writing provides powerful insights but is inherently limited by memory, selective emphasis, and narrative construction. While member checking added rigor, the auto-ethnographic portions still reflect individual storytelling shaped by personal reflection rather than objective analysis.

Future Research Directions

Future research should continue to challenge the long-standing assumption that communication difficulties in autism are primarily rooted in cognitive impairment. This investigation should include refinement of assessment methods for identifying apraxia within the autistic population, including the development of diagnostic tools that are sensitive to the unique motor-planning challenges in this group. This shift in diagnostic approach could significantly influence early intervention strategies and more accurately reflect cognitive potential.

Similarly, expanding treatment research is critical. Studies exploring intervention models that address apraxia-specific barriers—particularly those that are movement-based or motor-integrated—could lead to more effective communication outcomes. Furthermore, the development of adaptive devices designed to promote greater independence with AC for non-speaking individuals with autism offer a promising path forward.

Finally, comparing the efficacy of various AAC strategies, evaluating long-term outcomes, and conducting neurobiological research to uncover the underlying mechanisms of motor-speech disconnects will provide the evidence base necessary for shaping clinical practice and inclusive educational policies. By deepening our understanding of both assessment and intervention, the field can move toward more equitable and effective supports for non-speaking autistic individuals.

Conclusion

Redefining the criteria for measuring human value and competence beyond physical and verbal outputs requires a fundamental shift in societal, educational, and therapeutic paradigms. By recognizing motor impairments as a key factor in autistic communication challenges and leveraging emerging technologies, society can move toward a more inclusive understanding of intelligence. This transition will undoubtedly raise complex questions and systemic challenges, but it also holds the promise of a more equitable and inclusive future for this growing population.

The lived experiences of minimally and non-speaking autistic individuals, as shared in this auto-ethnographic study as a critical call to action of the “nothing about us without us” movement provides valuable perspectives that challenge long-standing misconceptions about communication and intelligence. By recognizing the profound role of motor impairments, particularly apraxia in communication difficulties, this scientific landscape can move beyond outdated paradigms that equate speech limitations with cognitive deficits.

This shift toward presumed competence is essential to fostering true inclusion, enabling autistic individuals to express their thoughts, and ensuring they have equitable access to education, health care, and social engagement. Future support for the non-speaking community must prioritize adaptive communication strategies that honor each individual’s cognitive potential, moving society toward a more just and inclusive understanding of neurodiversity as an ethical and humanistic path toward creating occupational engagement and fulfillment.