Beyond box-ticking: redressing communication power imbalances in autism research
Bethan explores the power dynamics driving autism research and how collaboration must form the basis of future research.
In August 2021, a consortium of premier institutes launched a major research project branded Spectrum 10K, with the aim of identifying the genetic basis of autism. Despite assertions about improving the well-being of autistic people, the project was met with outcry, eventually prompting the research to be paused. How was this study met with such hostility from the group of people it was claiming to serve?
The controversy over Spectrum 10K is not an isolated incident. As a common disability, autism is a major topic of health research. Most autism research focuses on identifying biological causes and designing psychological training to ‘correct’ behaviour. Yet autistic people insist these approaches are unhelpful and harmful, and advocate instead for research on effective services, mental health, co-occurring conditions, and inclusive approaches. The reluctance of many autism researchers to engage with these calls for change is deepening existing distrust between autistic people and the research that is supposed to help them.
“Achieving genuinely collaborative research requires a radical culture shift, ceding power from researcher to study group, and acknowledging them as experts in their own conditions”
The tension stems from fundamentally opposed perspectives about autism. Autism research has long operated under the pathological paradigm which views autistic traits—such as direct communication styles, special interests, and repetitive motions—as deficits to be eliminated. Consequently, research has aimed to 'cure' autistic traits, shaping negative societal attitudes: autistic people have been treated as problems to be solved, rather than people to be supported. Such problem-solving usually involves behavioural interventions enforcing ‘normal’ behaviour, which have been widely criticised as abusive. In aid of applying these interventions, autistic people are sub-categorised with divisive and dehumanising labels that brush over complex individual needs and obscure co-occurring learning disabilities, while fuelling misconceptions about the autism spectrum. Underpinning this pathologising perspective is the assumption that autistic people are less valuable than idealised ‘normal’ people—a eugenicist assumption with a long history stretching back to the first characterisation of autism.
Autistic self-advocates hold a radically different perspective. Online autistic communities spearheaded resistance to the pathological paradigm b generating the concept of neurological diversity in the 1990s, which re-positions autism as a healthy and simply different way of being. The neurodiversity paradigm recognises there is a variety of ‘neurotypes’, or types of brain that function in different ways. The most common neurotype is considered ‘neurotypical’, and others, including autistic, are thus ‘neurodivergent’. The neurodiversity paradigm aligns with the social model of disability which recognises that lack of access—infrastructural, medical, or social—is what disables a person, not the impairment itself. As an example, short-sighted people can be disabled by lack of access to glasses, but with corrective lenses, myopia is not disabling. The neurodiversity paradigm further argues that autistic people are disabled by societal marginalisation of neurodivergent traits and by support not being provided for issues arising from this marginalisation. In fact, for many issues faced by autistic people, suitable support strategies simply don’t exist due to choices about which issues to research and which to ignore. In this way, research priorities at large are disabling. The neurodiversity movement advocates for different approaches in autism research that situate autism as a valid difference rather than deficit and, accordingly, investigate strategies to reduce societal barriers for autistic people.
Despite its revolutionary potential, much research continues without taking neurodiversity into consideration. This is because many researchers are reluctant to engage with this community-generated perspective, feeling threatened by autistic involvement. To avoid engaging, some researchers even exploit the misconception that the neurodiversity movement excludes non-speaking or learning-disabled autistic people. However, this is a misguided, stereotyping, and bad faith argument: the neurodiversity paradigm includes all autistic people and does not deny autistic people need support, but rather advocates for this support to be empowering instead of belittling.
Image courtesy of Unsplash
The root cause of this reluctance is a lack of reciprocal communication between autism researchers and autistic people. Here, the grassroots neurodiversity movement overlaps with academic movements towards greater public and patient involvement (PPI) in health research. More specific than science communication or public engagement, PPI entails research being “carried out ‘with’ or ‘by’ members of the public, rather than ‘to’, ‘about’ or ‘for’ them.” Long campaigned for by disability advocacy groups with the clarion call “nothing about us without us”, the sentiment that research should be done with the people it affects is finally being institutionally recognised.
The call to include autistic perspectives has driven a rise in autism research operating under the neurodiversity paradigm, investigating priority issues through the lens of lived autistic experience. A good example is work by autistic social scientist Damian Milton on communication difficulties between autistic and neurotypical people. Milton proposed that difficulties navigating social interactions are not caused by an autistic social skill deficit, but instead by mismatches between autistic and neurotypical ways of thinking. Called the double empathy problem, this explanation is backed by practical research. It indicates mutual effort is required during autistic-neurotypical interactions to bridge the communication gap, rather than expecting only autistic people to conform to neurotypical socialising styles and silently bear the costs of doing so. Further, the double empathy problem warrants a rethink of ‘empathy deficit’ diagnostic questionnaires and can restore self-esteem by affirming that autistic people are ‘different’, not ‘broken’. In these ways, insights from neurodiversity research have inspired strengths-based support instead of deficit-focused training, facilitated resource sharing in online communities, changed intervention goals, addressed the diagnosis gender ratio, highlighted social and cultural influences in diagnostic disparities, and shifted broader societal attitudes.
Yet despite the transformative benefits of including autistic perspectives, PPI in autism research is often conducted as little more than a ‘box-ticking’ exercise. Autistic people feel their views are not listened to by many researchers, while researchers view community concerns merely as obstacles to be navigated, side-lining autistic inputs when these challenge the status quo. Selective PPI practices result in only sympathetic views being heard and limiting PPI to later project stages precludes influencing already-set research agendas. These practices reflect a power imbalance: with science placed as superior to lived experience, researchers are consequently averse to non-scientists influencing research directions, leaving non-scientists to “tinker at the edges”. This, of course, undermines the intention for PPI to steer research in relevant directions. Unsurprisingly, the fundamental causes of many autistic struggles—societal inaccessibility, stigma, and lack of support—continue to be overlooked as a result.
As the growing neurodiversity movement becomes increasingly difficult for autism researchers to ignore, a new subtle style of box-ticking PPI is emerging. Some researchers are superficially adopting the language of neurodiversity as if it were only a terminology trend, while still upholding the values of the pathological paradigm—a phenomenon termed “neurodiversity lite”.
“The neurodiversity movement advocates for different approaches in autism research, approaches that situate autism as a valid difference rather than deficit and, accordingly, investigates strategies to reduce societal barriers for autistic people”
Spectrum 10K falls squarely in this “neurodiversity-lite” category, criticised for furthering harm and failing to address autistic needs while proclaiming the opposite. In public-facing material Spectrum 10K uses language that signals alignment with the neurodiversity paradigm, such as “autistic differences”, identity-first language, and references to well-being. This has done little to overcome autistic people’s evidenced mistrust in the project’s researchers, methods, and data mismanagement. The overarching issue is the research aim: identifying genetic markers for autism and its sub-groupings does not address autistic people’s well-being. Rather, the fixation on potential genetic causes perpetuates harmful pathologising approaches and supports the eventual development of eugenic prenatal screening. Spectrum 10K researchers deflected concerns about such use of the study’s results, asserting that the study “does not aim to eradicate autism”. Yet discriminatory use of genetic results is a risk inherent in research on marginalised groups, and is especially pertinent to Spectrum 10K: the same autism researchers involved have previously stated eugenic end-goals and shaped autism stigma. The lack of genuine engagement with these broader impacts of the study is characteristic of neurodiversity-lite research, relying on superficial and disingenuous communication without meaningful re-evaluation of research.
“Autistic people feel their views are not listened to by many researchers, while researchers view community concerns merely as obstacles to be navigated, side-lining autistic inputs when these challenge the status quo”
Image Courtesy of Unsplash
Neurodiversity-lite research such as Spectrum 10K therefore highlights the critical need to avoid tokenistic PPI. Doing so requires engaging directly with autistic people, including those with learning disabilities, from the earliest agenda-setting stage of the research process. Achieving genuinely collaborative research requires a radical culture shift, ceding power from researcher to study group and acknowledging them as experts in their own conditions. There are many examples of successful initiatives using inclusive and accessible methods of engagement that avoid harming autistic participants. For instance, in an ongoing project developing school interventions to cut depression risk, neurodivergent participants are active co-investigators, identifying factors in school environments which help or hinder neurodivergent students. Emulating these participatory approaches would drive autism research forwards: novel ideas and key findings arise from autistic people’s lived experience and centring autistic people’s priorities drives the development of better access and support tools. To aid these efforts, there are calls for research funding bodies to enable and ensure meaningful PPI across funded projects. Moreover, autism research funders are themselves facing calls to have autistic input in funding decisions and champion autistic scientists researching autism.
Autism research should be helping autistic people. Instead, it is causing harm, and has been since its inception. The field is severely limited by a narrow approach stemming from the field’s eugenicist origins; addressing this is vital to meet the needs of a complex, marginalised group. As an expression of autistic lived experience, the neurodiversity paradigm offers a path forward. However, despite recent tokenistic displays of involvement, much autism research is not responding to the needs of autistic people, a consequence of imbalanced communication between researchers and autistic people. Radical changes are required: redressing power imbalances to take seriously a range of autistic voices.
