Who owns knowledge? Neurodivergence, power and the colonisation of lived experience

Institutional cynicism does not appear out of nowhere, nor does it simply emerge because individuals working within systems become tired, burnt out, or skeptical over time. Institutional cynicism grows out of systems historically built on hierarchy, classification, and control, and those systems are deeply entangled with the history of colonisation.

Colonial governance depended on categorising human beings. Administrators, doctors, and institutions were tasked with determining who was civilised and who was primitive, who was capable and who was deficient, who could govern themselves and who required supervision, correction, or confinement. These logics did not disappear with a magical end of colonial rule. They were absorbed into modern institutions and often reinforced, yes, still today.

Hospitals, psychiatric systems, disability services, residential care facilities, prisons, and welfare bureaucracies all carry echoes of these same organising principles.

Within such environments cynicism can become institutionalised. Staff working inside institutional systems can gradually become conditioned to doubt the people in their care, to lose patience, to resist compassion and to even become abusive. Lived experience and humanity itself becomes reframed as symptoms, distress becomes labelled non-compliance, and accounts of one’s own mind and body become suspect.

The authority of the institution replaces the authority of the individual. This dynamic affects many groups. Mental health patients, disabled people, autistic people, trauma survivors, the global majority and elderly people living in institutional care are all subject to systems where their autonomy is assessed, dictated, managed and mediated by professional authority. When institutions assume authority over a person’s reality, that person’s voice becomes negotiable and in many cases, erased.

This context applies when we look at current debates about autism and the recent comments by prominent autism researcher Uta Frith, who suggested that the autism spectrum has expanded so far that it may have “come to its collapse” (Frith, 2026). For many autistic people this framing feels less like neutral scientific observation and more like a familiar institutional pattern. When lived experience expands beyond earlier frameworks institutions sometimes interpret that expansion as a loss of legitimacy. It then trickles out into public health facilities, schools, and workplaces, along with therapeutic modalities, treatment and future planning in policy and legislation.

But what if what appears to be collapse is actually recognition? What if this autism spectrum is not collapsing at all? What if we are simply discovering that it was never as rare as previously believed?

Lived experience has often led scientific understanding rather than followed it. Historically, science frequently arrives after communities have already begun articulating their experiences. I have had to learn this lesson personally. There was a time when I became fiercely protective of the idea that PDA must be understood strictly as an autistic profile. I defended that position strongly because it mattered deeply to me and to the families I worked with. Yet intellectual humility requires the willingness to step back and listen when other people describe experiences that do not perfectly match our frameworks. I had to be humble enough to put my own interests and beliefs aside and learn from the experiences of others. This is how understanding evolves, not through rigid certainty but through dialogue, humility, and lived experience.

The history of autism research itself illustrates how scientific narratives evolve and how power shapes which voices are remembered. Leo Kanner published one of the first widely recognised clinical descriptions of autism in 1943, describing children with what he called “autistic disturbances of affective contact” (Kanner, 1943). In later commentary he described parents of autistic children as appearing emotionally distant. These observations were later taken up and dramatically expanded by Bruno Bettelheim into what became known as the refrigerator mother theory. Bettelheim argued that autism resulted from emotionally cold parenting environments and compared the emotional climate of these homes to a refrigerator (Bettelheim, 1967). For decades mothers were blamed for their children being autistic while Bettelheim presented himself publicly as a psychiatrist and psychoanalyst, even though he was not medically trained and did not hold a medical degree.

Another example appears in the history of recognition itself. Hans Asperger described children with what he called autistic psychopathy in 1944, noting patterns of social difference, intense interests, and distinctive cognitive styles (Asperger, 1944). Yet long before Kanner or Asperger published their work, Ukrainian psychiatrist Grunya Efimovna Sukhareva had already described remarkably similar profiles in the 1920s. In her 1926 paper she documented children who showed social differences, intense interests, unusual sensory sensitivities, and distinctive patterns of thinking that closely resemble what we now recognise as autistic traits (Sukhareva, 1926). Her work preceded Kanner by nearly two decades, yet it remained largely forgotten for many years. Scientific history often remembers the voices connected to institutional power and forgets the ones that are not.

In 1896 Sigmund Freud published a paper titled The Aetiology of Hysteria. In this paper Freud proposed what became known as the seduction theory and argued that many of the symptoms observed in women diagnosed with hysteria were the result of real childhood sexual abuse (Freud, 1896). The reaction from the medical establishment was swift and hostile. Freud faced backlash from male colleagues who rejected the idea that respectable fathers and authority figures could be responsible for widespread sexual abuse. Soon after, Freud abandoned the seduction theory. He later replaced it with a radically different interpretation, suggesting instead that many of the women’s accounts reflected unconscious fantasies or desires toward their fathers or other male relatives. The consequences of that shift echoed through more than a century of psychology. Survivors of sexual abuse were frequently disbelieved, pathologised, and accused of imagining their experiences. The legacy of that reversal still shapes how victims are treated today.

Dissociative Identity Disorder continues to face skepticism from many professionals despite decades of clinical documentation. Survivors of organised abuse and ritual abuse have historically been dismissed or ridiculed. Yet when scandals such as the Epstein case reveal the existence of powerful abuse networks society suddenly becomes more willing to acknowledge what survivors have been saying all along. Where does that leave survivors? Where does it leave victims while institutions debate whether their experiences are real? Where does it leave vulnerable people while society waits for the evidence in order to believe their stories?

This leads to the conditioning of an almost inhumane, cold and clinical approach to experiences that destroy peoples’ lives, including the vilification of those diagnosed with narcissistic personality disorder and borderline personality disorder. We’re taught to focus on the outcomes of early, repeated, chronic and ongoing - often inescapable trauma children experience while completely dismissing what has happened to people in favour of asking what is wrong with them. We overlook the difference between people with these diagnoses and people who are actually abusive - they are not the same thing.

Bias appears in diagnostic patterns as well. Research has documented racial disparities in behavioural diagnoses, with global majority children significantly more likely to receive diagnoses such as Oppositional Defiant Disorder compared with white children, who are more often diagnosed with developmental conditions such as ADHD or autism (Fadus et al., 2020).

Adult autism assessment reflects similar tensions. Many adults who seek autism assessments after years of reflecting on their experiences are frequently told that their presentation is better explained by trauma. Trauma can certainly overlap with autistic experiences, but this explanation often leaves people questioning experiences they may have spent years trying to understand before seeking an assessment. How much time do non-autistic people spend wondering whether they might be autistic in comparison to autistic people following their intuition - expected to pay thousands of dollars, months to years on waitlists, risking trust in the professional they’re able to access having truly learnt about the variation in autistic expression.

Science can illuminate important truths, yet it can also be used to gatekeep, invalidate, and exclude. The history of behavioural intervention in autism offers a stark example. Psychologist Ivar Lovaas, a pioneer of Applied Behaviour Analysis, used aversive techniques in early autism treatment programs, including electric shocks, slaps, and other punishments intended to suppress autistic behaviours. In a widely cited interview he stated, “You see, you start pretty much from scratch when you work with an autistic child. You have a person in the physical sense… but they are not people in the psychological sense” (Chance, 1974). In the same interview he described behavioural treatment as a process of “building a person.” He was indeed a violent perpetrator of abuse toward disabled children and yet these approaches were presented as scientific progress at the time, and today while they are widely recognised as ethically troubling, elements of those behavioural frameworks continue to influence interventions.

Photo by Elīna Arāja

In the decade I have spent working in the autistic space I have also seen a gradual shift back toward hierarchy. Scientific research is once again positioned as the ultimate authority, while professionals with academic credentials are often given louder platforms than the people whose lives that research describes. This tension has appeared even within the neurodiversity movement itself. The sociologist widely credited with introducing the term neurodiversity later argued that articulate autistic adults should often be understood through the Asperger label rather than autism more broadly. She also made public statements about gender identity that many autistic and LGBTQ community members have criticised as transphobic. When autistic people challenged those remarks she responded publicly with frustration and anger and characterised critics as an ungrateful mob building businesses off the back of her research and coining a term she is now reported to not have coined, but introduced to academia.

These conflicts highlight something important. The people who introduce ideas do not ultimately own them. Once ideas enter communities they evolve through lived experience and collective understanding. This dynamic reflects something deeper: a coloniser mentality embedded in academic and institutional culture. Knowledge is extracted from communities, studied, published, and then treated as the property of those who produced the research rather than the people whose lives it describes. Researchers build careers and authority from knowledge generated through communities while those communities remain underrepresented in decision-making and leadership. These researchers are very often white and embedded in institutions that historically excluded the communities they now claim to study. Knowledge becomes something to own, something to publish, something to build prestige around, instead of something returned to communities in the form of improved conditions and quality of life.

I know this dynamic personally. I experienced my own work being extracted by a white woman with a PhD who is now working in research. My ideas, language, and frameworks were used without permission or credit. When I spoke out about it my credibility and reputation were attacked while the person responsible continued building a career using knowledge that did not originate with her. She continued using terminology she did not coin and never corrected others when they attributed that work to her. After therapy, retreating from my work and doing a lot of work around the trauma and betrayal associated with this experience, I am now able to accept that families are being helped by the information, and this was my intention.

Is my work about my ego, or is it about contributing to community?

In the non-speaking autistic community we see similar dynamics with the work of Soma Mukhopadhyay, whose methods and approaches have been repeatedly colonised, repackaged, and rebranded by others. Entire professional empires have been built around repackaging that work while the original foundations are obscured. At the same time families of non-speaking autistic people are desperate for support, education, and guidance. In that desperation the work of those who colonise ideas openly and unapologetically is often excused.

Another group who experience the consequences of institutional misunderstanding are non-speaking autistic people themselves. When non-speaking autistic children express frustration, distress, or emotion through their bodies it is frequently labelled behavioural non-compliance. As a parent I read behavioural incident reports. They follow a familiar structure. The report describes what happened. The child misbehaved. The child displayed challenging behaviour. The intervention section explains what staff did. The child was reminded about safe hands. The child was reminded about calm behaviour. But imagine for a moment what that experience might feel like. Imagine having thoughts, emotions, needs, and frustrations like any other human being but being denied the tools required to communicate them. Imagine every attempt to communicate through your body being interpreted as misbehaviour. Imagine the defeat and inner turmoil of having every attempt to communicate punished.

These are the direct flow on effects of scientific research with a focus on behaviourism. Dehumanisation.

Discussions about autism often focus narrowly on diagnostic boundaries while ignoring the broader realities of autistic life. Research consistently shows that autistic people face significantly elevated suicide risk. Studies indicate autistic people may be several times more likely to die by suicide than non-autistic people, with suicidal thoughts reported at significantly higher rates among autistic adults (Hedley & Uljarević, 2018; Kõlves et al., 2021; Cassidy et al., 2014). Importantly the highest suicide risk is often observed among autistic people without intellectual disability, those frequently labelled “high functioning.” Autism rarely exists in isolation. Many autistic adults experience complex co-occurring conditions including autoimmune disorders, chronic illness, depression, anxiety, trauma, and burnout to name a few.

Research evolves. Understanding evolves with it, and one of the most powerful forces shaping that evolution is the willingness of people with lived experience to speak publicly about their lives. Yes, sometimes the people we once looked up to disappoint us, and sometimes they even betray us.

But nobody can take away our stories. Nobody can take away the truths we have lived, and nobody can take away our right to know ourselves and one another.

We do not place crowns on human beings and rely on them to tell us who we are.

- Kristy Forbes

This article was originally published on my Substack, where I share longer-form reflections and writing: Who owns knowledge? Neurodivergence, power, and the colonisation of lived experience