Ethics Before Evidence: Conducting Small-Scale Action Research in Neurodiversity-Affirming Practice
The Praxis of Presence: How to Study Change Without Replicating Control
A reflective guide for speech therapists on conducting small-scale, ethical, and relational action research—transforming daily practice into inquiry, centring GLP ways of knowing, and returning lived evidence to the commons with care.
Introduction: The Question Beneath the Question
It begins, as most reckonings do, with a small unease—something felt before it’s named.
Speech therapists are trained to implement research, not to create it. They’re taught to follow the map, not to draw one. To apply the findings of others, to measure outcomes, to stay faithful to the script. Somewhere along the way, someone convinced them that research is a thing that happens elsewhere—that it belongs to the credentialed, the quantitative, the distant.
And yet, every day, in every therapy room, discovery unfolds. A child repeats a phrase differently. A gesture becomes a bridge. Safety hums beneath speech. These moments are not accidents. They are data—small, living proofs of what happens when connection precedes control.
Behaviourism taught the world to measure. GLP reminds us to witness. To notice what grows in the quiet. To recognise that the act of attention itself can be research, if we’re willing to see it that way.
I come to this conversation wearing several hats—researcher, teacher, IRB chair, autistic gestalt processor. I know what it is to design studies and to be studied. I know how ethics can become paperwork instead of practice, how consent can be signed before anyone feels safe.
Real ethics begins elsewhere. It begins in the relationship. Before any data is gathered, before any consent form is printed, there’s a moment of recognition—two people acknowledging each other as collaborators in meaning, not collector and subject. That’s where research begins. Not with recruitment, but with reciprocity.
When I invite speech therapists to engage in small-scale action research, I’m not asking them to become something new. I’m asking them to see what they already do as knowledge-making. The adjustments, the attunement, the notes scribbled after a session—all of that is inquiry. It’s observation with care built in.
The problem isn’t that practitioners lack rigour. It’s that the system has defined rigour so narrowly that only certain kinds of knowing fit through. But the richest data often lives outside the grid—in the pauses, the recoveries, the moments where meaning stirs before it can be named.
So perhaps the first act of research isn’t to design or to measure. It’s to notice. To listen long enough for the pattern to show itself. To understand that every echo is data, every silence a question, every act of gentleness an ethical stance.
That’s where it starts—not in theory, but in the shared space between one mind and another, trying to make sense of the world together.
Why Small Scale Action Research Matters
Ingole, A., Giri, P., & Mudey, A. (2016). A study incorporating action research to enhance community based medical education. International Journal of Community Medicine and Public Health, 3, 3391-3394. https://doi.org/10.18203/2394-6040.ijcmph20164261.
Action research begins where theory remembers it has hands. It is not a branch of experimental design but its quiet counterpoint—a practice born in motion, where inquiry and action move together until they become indistinguishable. Traditional research seeks validation. Action research seeks transformation. It turns method inside out, asking not “Is this true?” but “Does this help?”
When I think of Peters—her notebooks filled not with variables but with voices—I see the same impulse. She did not stand apart from her subject; she stood within it. To study language was to live alongside it, to listen for coherence as it unfolded in real time. Action research shares that pulse. It treats the work itself as evidence, the practitioner as both witness and participant. Each decision, each reflection, becomes a data point within a living cycle of observation, adjustment, and change.
In the medical field, this approach has already proven its worth. A 2016 study by Ingole and colleagues explored how medical students used action research during community placements. The students weren’t passive observers—they acted, reflected, and acted again. The result wasn’t only improved community outcomes; it was improved researchers. Their confidence grew. Their sense of relevance deepened. They left not with static findings but with evolving competence—a skillset shaped by doing, not just knowing.
For speech therapists, the same potential lives in every session. The notes you keep, the adjustments you make, the patterns you notice across weeks—these are not mere records. They are the beginnings of inquiry. Each small experiment—a new way of scaffolding, a different rhythm of prompting—is a micro-study. And when documented and reflected upon, these small studies become something larger: a collective archive of relational knowledge.
Action research resists enclosure. It breaks the monopoly of “evidence-based practice” that treats practitioners as technicians rather than thinkers. It insists that knowledge can grow horizontally, through many small projects rather than a few sanctioned ones. Forty clinicians each publishing one careful, humble study can change a field faster than a single monolith of “proof.” That’s how the gestalt lineage has always advanced—through resonance, through pattern, through the aggregation of attentiveness.
When framed through the Power Threat Meaning Framework, action research becomes even more than a method—it becomes an act of reclamation. It asks: who holds the power to define evidence? What threat arises when practitioners begin to write their own truths? And what meaning emerges when those truths are shared, not to compete, but to connect?
The hope is not perfection but proliferation—many small studies, each situated in its own context, each conducted with care. The sum is never the point. It’s the coherence that grows between them that matters—the collective rhythm of practitioners listening, acting, reflecting, and returning their knowledge to the commons. That’s how a field renews itself. Not by waiting for permission, but by practising curiosity until it becomes culture.
Before the Proposal — Ethics as Ground, Not Gate
Ethics does not begin with a signature. It begins with a breath—with the moment two people recognise that something fragile and human will unfold between them, and that it deserves to be handled with care. Too often, institutional ethics reduces that encounter to paperwork—tick boxes, disclosure templates, consent forms designed to protect the university rather than the participant. We call this procedural ethics: the performance of safety through documentation. But real ethics—the kind that holds, the kind that heals—is relational. It lives in tone, in pacing, in whether someone feels seen when you ask for their story.
From the IRB chair’s seat, I’ve seen both sides. The protocol polished to perfection but empty of presence. The hastily written proposal that still somehow radiates care. What matters is not how tidy the form reads, but whether the relationship at its centre has been honoured.
When your participants are neurodivergent, this distinction becomes more than academic—it becomes moral. Many of us move through the world already over-studied and under-understood. We’ve signed the consent forms, sat through the questionnaires, watched our words flattened into data points that bear no resemblance to what we meant. So if you are to study with us, begin differently.
Start with Plain Language. Not the condescending kind, but the kind that invites understanding. Consent should be readable not only to the participant’s vocabulary, but to their nervous system. It should sound like safety. Ask, Does this feel clear to you? Do you want to rephrase any of it in your own words? Consent is not a form to be signed once—it’s a conversation to be revisited.
Shuman, A., & Caldeira, O. (2024). Folklore, Disability, and Plain Language: The Problem of Consent. Journal of American Folklore, 137, 308 - 320. https://doi.org/10.5406/15351882.137.545.03.
Next, bring participants—or families, or clients—into the design itself. Ask what questions feel important to them, what outcomes matter. This isn’t about tokenism or ticking the “lived experience” box. It’s about restoring agency to those whose experiences generate the data in the first place. When someone contributes to shaping the question, they also shape the meaning of the answer.
Adugu, E. (2021). Contextualizing Action Research. International Journal of Adult Education and Technology. https://doi.org/10.4018/ijaet.2021040103.
In small or tight-knit communities, anonymity is often a fiction. Everyone knows who the child is, who the family is, who “the GLP therapist in that district” might be. Protecting identity, then, means more than redacting names. It means discussing openly what visibility feels like, and what it costs. Some may want their story shared; others may not. Let them decide how much of themselves to reveal. Ethics is not about erasure—it’s about choice.
Above all, resist the urge to turn participants into subjects. That language—subject, object, data—belongs to an older world of control. In a GLP frame, every participant is a co-interpreter of meaning. You are studying together. You are both learning how language, care, and knowledge move through relationship.
Kakoulidou, M., Pavlopoulou, G., Chandler, S., Lukito, S., Matejko, M., Jackson, I., Balwani, B., Boyens, T., Poulton, D., Harvey-Nguyen, L., Glen, Z., Wilson, A., Ly, E., Macauley, E., Baker, S., Bullen, G., & Sonuga-Barke, E. (2024). Deepening the participation of neurodivergent youth in qualitative mental health research: Co‐development of a general approach and the evaluation of its implementation in a study on emotion. JCPP Advances, 4. https://doi.org/10.1002/jcv2.12287.
Russ, E., Petrakis, M., Whitaker, L., Fitzroy, R., & Short, M. (2024). Co-operative inquiry: Qualitative methodology transforming research ‘about’ to research ‘with’ people. Qualitative Research, 25, 43 - 64. https://doi.org/10.1177/14687941241234272.
So, before the proposal, before the literature review, before the form: sit with that. Ethics is not a gate you pass through to begin research. It is the ground beneath every question you ask. If the ground is unstable—if trust is absent, if voice is tokenised—no study, however rigorous, will stand. But if the ground is steady, even a small inquiry can hold extraordinary weight.
Designing the Inquiry — From Hypothesis to Curiosity
Designing a study should feel less like building a cage and more like opening a window. The traditional model begins with a hypothesis—a statement of prediction, a controlled claim about what will or will not happen. But curiosity does not move that way. It doesn’t march toward proof; it circles, it listens, it wonders. When you design research through a GLP lens, the question is not can this be tested? but what wants to be understood?
Think of your research question as an invitation rather than a verdict. Instead of asking does this method improve outcomes? ask how does this method change the feel of the room? How does the learner’s body respond when safety comes first? The point is not to trap truth in a net but to give it somewhere to land.
In my own work, I use a framework I call SACRED—a quiet counterpoint to the institution’s demand for SMART. It stands for Situated, Authentic, Co-constructed, Relational, Ethical, Dialogic.
Each word reminds us that learning and research are never abstract. They are always situated—in a body, a room, a moment in time. They are authentic—rooted in the real experiences of those who participate. They are co-constructed—built together, not imposed. They are relational—shaped by trust, by rhythm, by mutual regulation. They are ethical—not in compliance but in care. And they are dialogic—alive in conversation, open to being changed by what they hear.
Questions written in this spirit often begin with how or why rather than if or whether. How does echolalia shift when we introduce co-narration? Why does session engagement rise when we begin with a “soft start”? How might co-regulation signals reveal readiness for language, long before words arrive? These are not abstract problems; they are living questions, drawn from practice.
Evidence, too, takes on a different shape. You’re not hunting for consensus—you’re listening for coherence. I call this triangulation through resonance. It means gathering different forms of knowing—narrative notes, observations, artefacts like drawings or session scripts—and seeing where they echo each other. The pattern that repeats is what’s real.
Each of these small inquiries—a week’s reflection on co-narration, a month tracking soft starts, a term spent observing regulation cues—can stand alone. But together, they form a larger body of work, a constellation of practitioner research mapping how communication grows when it is met with safety and respect.
The design need not be perfect. It only needs to be alive. A good question will always change you before it changes the field. The goal is not to reach a conclusion but to deepen understanding—to make the invisible visible, one attentive act at a time.
Data as Relationship
Data, for me, has never been numbers on a chart. It’s the echo of a moment that lingers in the nervous system—the look, the pause, the pattern you can’t quite name yet. When we speak of “data collection,” what we really mean is listening across time. Watching how understanding ripples outward, returns, reshapes itself. GLP reminds us that language—and by extension, knowledge—is recursive. What’s true on Monday may hum differently by Friday. So we listen again.
Measurement is the wrong metaphor. We are not tracking; we are tending. We are not analysing; we are attuning. The work is to stay close enough to what unfolds that we can feel its texture change beneath our hands.
In practice, this means building a documentation rhythm that matches the relational nature of the work. Keep a reflective journal after each session—not just what happened, but how it felt, what shifted in tone or trust. Use audio diaries, if consent allows, to capture the cadence of a child’s voice or the quiet before they speak. Note the gestures, the repetition, the scripts that carry meaning beyond their words. These become your field notes—the living record of the relationship itself.
Some practitioners find that visual coding helps—colouring transcripts by emotional valence, marking echoes and expansions, mapping the journey of a single phrase as it evolves across weeks. Others prefer narrative summaries that weave observation and interpretation together until they can no longer be teased apart. There is no one right method; there is only fidelity to the moment and care for the meaning it holds.
When you synthesise what you’ve gathered, aim for thickness rather than compression. Resist the temptation to reduce human learning to frequency counts or pie charts. A single line of transcript—annotated with tone, gesture, and context—can tell more about growth, safety, and connection than a thousand data points stripped of affect.
The goal is not to prove that something happened but to understand how it happened, and what it felt like from within. To write data as relationship is to honour that learning is not a variable to be measured but a story to be told. Each note, each transcript, each recollection becomes a way of saying: I was here, I witnessed this, and it mattered.
Writing and Publishing — Translating Wholeness Without Losing It
Writing is where the work turns inside out—where practice becomes language, and experience must find a form that others can meet. But this is also where many practitioners falter, caught between wanting to share what they’ve witnessed and fearing that the act of publication will strip it of life. The analytic machine can do that—it chews on story until only data remain. The task, then, is to translate wholeness without losing it.
Begin from where you stand. Write in the first person, not as confession but as orientation. Tell your reader who you are, what brought you here, and how your way of knowing shapes what you see. “As a clinician-researcher and autistic GLP, I…” is not indulgence—it is integrity. It situates the lens through which meaning was made. Reflexivity is not bias; it’s transparency about the conditions under which the study was lived.
When journals demand a framework, give them one—but make it serve you. Choose an established qualitative approach—Interpretative Phenomenological Analysis, Narrative Inquiry, Grounded Theory—and then explain why it fits the texture of your question. These are scaffolds, not cages. They lend structure without dictating tone. The key is to let your framework hold the work gently, without forcing it into angles that betray its shape.
Bring the voices with you. Include excerpts of lived language—dialogue, session transcripts, lines from journals or reflections. Treat them as vignettes or data poems, fragments that preserve rhythm and tone. Let your participants’ words breathe; don’t translate them into something smoother. Authenticity is often jagged. Keep the edges. They tell the truth of the encounter.
There are places ready to welcome this kind of writing. Perspectives of the ASHA SIGs has begun to open to narrative and practitioner-based pieces. Frontiers in Education hosts a Neurodiversity section. The Open Journal of Occupational Therapy publishes work that bridges practice and research. And Lived Places Publishing gathers community-authored accounts of identity and experience that sit comfortably beside academic texts. Each of these venues is built for voices that refuse reduction.
Whenever possible, write with—not about—those whose stories you hold. Collaborative authorship with clients or parents transforms the paper from report to dialogue. It shares ownership of interpretation and honours the co-construction at the heart of ethical inquiry.
And finally, remember what publication is for. It is not dissemination alone; it is stewardship. You are releasing something that was once intimate into the public sphere. Ask yourself not, Did I publish? but Did I protect meaning? If your work still feels alive—if it still carries the breath of the room it came from—then you have done it justice. The rest is formality.
The Politics of Evidence — Refusal as Method
Every field has its altar, and in ours it is called “the gold standard.” Randomised controlled trials—neat, contained, measurable—are treated as the purest form of truth. They promise certainty, objectivity, rigour. But what they really deliver is distance. To achieve control, they strip away everything that makes learning human: context, emotion, relationship, unpredictability. The child becomes a variable, the therapist a technician, the session a site of compliance. Analytic supremacy thrives here—under the guise of precision.
For those of us who live and work in the relational world of language—the messy, recursive, embodied world—”the gold standard” is not gold at all. It is an enclosure. It tells us that only certain kinds of knowing count, and only when filtered through methods that flatten the very thing we’re trying to understand. It declares that qualitative knowledge, narrative knowledge, lived knowledge are soft, biased, suspect. Yet we know that what happens between two people in a room cannot be replicated in a lab, and that trying to do so risks erasing the truth we came to find.
Refusal, then, becomes a form of ethics. To refuse this hierarchy is not to abandon evidence—it is to protect it. Refusal is not withdrawal from knowledge but fidelity to it. It is the insistence that data remain alive, that meaning not be severed from relationship. To refuse reduction is to honour complexity as it exists in practice: tangled, emotional, partial, true.
This kind of refusal is generative. It clears space for new epistemologies to take root—for ways of knowing that have always been here but were never granted authority. Citing autistic and GLP scholars is part of that work. Each citation is an act of redistribution, a transfer of epistemic power from institutions to those who live the knowledge they describe. It says: we are not your subjects; we are your colleagues. We do not need translation—we are already fluent.
The politics of evidence, at its core, is about who gets to decide what reality is. The answer must no longer be the few who control the metrics, but the many who live the meaning. When enough practitioners, parents, and neurodivergent thinkers write from where they stand, the field shifts. Authority disperses. The canon rewrites itself.
So yes—refuse. Refuse the narrowing of what counts as evidence. Refuse the hierarchy that treats intimacy as error and detachment as truth. Refuse the erasure of lived expertise in favour of abstract compliance. And in that refusal, make space for something larger—an ethics of witnessing that recognises the fullness of human learning as worthy of study, precisely because it cannot be controlled.
Final Thoughts — The Study as Sanctuary
To study a child’s language is to step into sacred ground. Not sacred in the distant, ceremonial sense—but sacred as in tender, alive, not to be handled without care. Meaning is still forming here, unsteady on its feet. Every sound, every gesture, every glance carries the shimmer of becoming. It is not our task to measure that. It is our task to witness it—to stay long enough for the pattern to reveal itself, to listen until the language tells us what it needs to be.
Research, at its best, is an act of reverence. We enter quietly, knowing that what we find is not ours to keep. The data, the notes, the transcripts—all of it belongs first to the people who lived it. We borrow it for a while, tend to it, and then return it, changed by the time spent in its company.
When we write, we do not claim discovery; we offer reciprocity. Each study becomes a small gesture of return—another story placed back into the commons, where it might meet others and grow. If we have done our work well, the writing will carry traces of its origin: the warmth of the room, the rhythm of the voices, the mutual pulse of understanding that made it possible.
And so, the study becomes sanctuary—not because it shields us from the world, but because it reminds us of how to live within it. To study is to care, to care is to attend, and to attend is to resist erasure. Every time we listen with integrity, we keep a little more of the world intact.