Who Does This Serve? Challenging the IQ Model in Autism Research

Exposing the Harm of Reductive Metrics and Power-Driven Agendas in Autism Studies

In the Global North, the conversation around autism support for adults has seen notable developments in recent years, though progress remains slow and uneven. Employment initiatives, peer-led support programmes, and inclusive practices in education and healthcare have emerged as cornerstones of advocacy in some places, but these efforts often fall short of addressing the systemic barriers autistic people face. Autistic individuals frequently navigate a world that is ill-equipped to accommodate their needs, leaving employment, healthcare, and community inclusion as persistent challenges. Peer-led programmes have shown promise in empowering autistic adults, whilst co-designed healthcare initiatives, such as Australia’s AASPIRE Healthcare Toolkit, highlight the transformative potential of autistic-informed systems. Yet these bright spots are exceptions in a broader context of unmet needs.

Amid this landscape, a new study proposes an IQ-based framework for describing autism, an approach that risks undermining the progress made by autistic-led advocacy. By reducing the rich complexity of autistic lives to intellectual stratifications, the study perpetuates a narrative that prioritises metrics over lived experience, dismissing the nuanced needs and desires of the autistic community. Across the Global North, autistic individuals have made their priorities clear: practical support in employment, healthcare access free of sensory and communication barriers, and genuine inclusion in educational, professional, and social spaces.

As an autistic person (diagnosis = Level 2: without intellectual disability but requiring significant language support) and a Gestalt Language Processor (GLP), I find this framework not only misguided but dangerous. Grounded in the Power Threat Meaning Framework (PTMF), today’s article examines how the introduction of such a framework risks marginalising the majority of autistic people globally, whilst advancing an agenda that serves the interests of “cures” researchers and funders rather than the autistic community itself. This is not an academic curiosity—it is a direct threat to the dignity, representation, and well-being of autistic individuals, framed through the lens of power dynamics and the systemic erasure of our voices.

Understanding the IQ Scale Proposal

The study at hand introduces a proposal to classify autism using an IQ-based stratification framework, ostensibly to provide a more granular understanding of autistic experiences. The authors argue that this scale enables more precise research outcomes and resource allocation. However, this approach rests on fundamentally flawed assumptions, particularly the notion that intellectual ability can meaningfully encapsulate the needs, experiences, and challenges of autistic individuals. Whilst intellectual disability is a relevant factor for a small subset of the population, reducing autism to an IQ scale fails to capture the nuanced processing styles that characterise a significant majority of autistic individuals.

Crucially, the study omits a control for Gestalt Language Processors—individuals who acquire language holistically rather than analytically. This omission is not a minor oversight. GLPs represent a significant proportion of the neurodivergent population, including many autistic individuals, and their unique processing styles render standardised IQ tests ill-suited for accurately assessing their cognitive and linguistic abilities. By neglecting to account for GLPs and similar nuanced profiles, the study’s proposed framework risks producing results that are not only unrepresentative but actively misleading. When the population being measured cannot be fully captured by the tools used, the validity of those tools—and the conclusions drawn from them—becomes highly questionable.

This proposal represents more than just an academic misstep; it has far-reaching implications for autism research and the broader autistic community. By prioritising an IQ-based framework, the study reduces autism to a simplistic metric that overlooks the diverse realities of the majority of autistic individuals. This is particularly problematic given that most autistic people, whether formally diagnosed or self-identified, fall into Level 1 of the DSM criteria. These individuals account for approximately 70% of the neurodivergent population, making them the largest and most visible demographic within the community (Gardner et al., 2018; Jin et al., 2018; Izuno-Garcia et al., 2023; Maenner et al., 2021). Yet the focus on intellectual stratification perpetuates the “burden of disease” narrative, which prioritises severity over diversity and, in doing so, marginalises the experiences of the majority (Baxter et al., 2014; Li et al., 2022; H. Y. et al., 2023; Khan et al., 2012; Hahler & Elsabbagh, 2014).

Side note: The concept of “burden of disease” first gained prominence in the early 1990s with the development of the Global Burden of Disease (GBD) study, initiated by the World Bank in collaboration with the World Health Organization (WHO) and researchers from Harvard University. The foundational study, published in 1993 as part of the World Development Report, introduced the metric of disability-adjusted life years (DALYs) to measure the overall burden of disease by combining years of life lost (YLL) due to premature mortality and years lived with disability (YLD).

The consequences of adopting this framework extend beyond misrepresentation. An IQ-based approach risks reinforcing harmful stereotypes that conflate intellectual ability with worthiness of support, further entrenching a system that gatekeeps resources and opportunities for autistic individuals. It perpetuates the notion that autistic people must “prove” their deficits to receive accommodation, sidelining those whose challenges are less visible but no less significant. For Level 1 and Level 2 autistic individuals, who already struggle to have their needs recognised, this framework would only deepen the divide between those deemed deserving of support and those left to navigate an inaccessible world.

In short, the IQ-based stratification used by this study does not advance autism research—it undermines it. By erasing the nuanced experiences of autistic individuals, particularly GLPs and those within the Level 1 and Level 2 criteria, this framework serves only to narrow the lens through which autism is understood. Rather than promoting progress, it risks entrenching outdated stereotypes and diverting resources away from the broader autistic community.

A PTMF View

An IQ-based framework for autism immediately raises the question, even if it’s just for this study: who stands to benefit? The answer, unsurprisingly, lies with those who hold power—researchers seeking simplified metrics, policymakers prioritising cost efficiency over meaningful support, and funders like the Gates Foundation, whose investments shape the research agenda in ways that reflect their own priorities rather than the needs of autistic people. This framework consolidates power in institutions and individuals who are far removed from the lived experiences of those they claim to study. It marginalises anyone who does not fit neatly into the IQ categories, erasing the complexity of autism in favour of a reductive approach rooted in convenience rather than understanding.

The origins of IQ testing are inextricably linked to eugenics (Oller, 1997), and the continued reliance on such measures in autism research is a stark reminder of how these troubling roots persist. Eugenics sought to classify human value based on rigid, often racist, and classist metrics (Allen, 2006), and whilst the language may have evolved, the framework remains deeply embedded in how society evaluates and supports autistic individuals. This IQ-based model perpetuates the idea that intellectual ability is the sole determinant of worth and need (Lamb,1999), sidelining the unique challenges and strengths of those who process the world differently. Autism research’s inability—or refusal—to sever ties with eugenic thinking is not just a historical oversight; it’s a current, active harm.

For all autistic people, diagnosed or not, this framework poses a tangible threat to well-being and identity. By focusing on IQ, the framework prioritises the extremes of support needs—those with intellectual disabilities on one end and those deemed “high-functioning” on the other—whilst leaving those in between invisible. Level 1s and 2s often require nuanced, context-dependent support, but an IQ-based framework disregards these subtleties. Worse still, eugenic thinking always threatens those outside its narrow “favourites list,” rendering large swathes of the autistic population vulnerable to erasure and exclusion.

For GLPs and others with unique profiles, this threat is especially pronounced. These individuals often defy standard metrics of cognition and communication, and their needs cannot be encapsulated by an IQ score. The adoption of such a framework risks further misrepresentation, leaving GLPs and others without the supports they need to thrive. Insurers and healthcare systems could easily leverage these studies to deny accommodations to those with “normal” IQs, reinforcing the gatekeeping of resources and exacerbating existing inequities.

Perhaps most insidiously, this framework reshapes the meaning of autism itself. By centring intellectual metrics, it shifts the narrative away from the lived experience that defines autistic identity and the criteria laid out in the DSM—criteria that, whilst imperfect, rightly emphasise challenges in communication, sensory processing, and navigating a world not designed for us. Autism is not a series of numbers on a scale; it is a complex interplay of sensory, communicative, and relational differences that shape how we experience the world. An IQ-based model threatens this understanding, reducing the richness of autistic identity to a cold and isolating calculus. It risks fragmenting the community by prioritising data points over the shared reality of sensory and communication needs, which are central to both the DSM criteria and the lived experiences of autistic people. This is a profound loss for a community grounded in mutual understanding and solidarity.

In doing so, this framework distorts what it means to be autistic. It undermines self-understanding and community solidarity, replacing them with a narrative driven by external metrics and institutional priorities. For those of us navigating the intersections of identity, support needs, and systemic barriers, the implications are chilling: a story about us, written without us, that does not see or serve us.

Historical and Contemporary Context

Autism research has long been shaped by reductive frameworks, with early studies often narrowly focused on deficits rather than understanding autism as a valid neurotype. These frameworks have historically emphasised pathology, categorising autistic individuals by what they lack rather than recognising their diverse strengths and challenges. Such approaches have influenced policy, education, and public perception, often leaving autistic people marginalised and misunderstood. From Bettelheim’s “refrigerator mothers” to modern “burden of disease” narratives, the focus has been on fitting autism into predefined boxes, with little regard for the complexity of autistic lived experience.

The IQ-based framework used in this study is the latest iteration of these reductive tendencies. Whilst the study purports to advance understanding, its reliance on outdated IQ metrics echoes eugenic roots in autism research—an uncomfortable history that continues to cast a shadow over the field. This reductionism does more than oversimplify; it risks driving policy and resource allocation away from the actual needs of autistic individuals, especially those who don’t fit neatly into its stratifications.

Complicating matters further is the influence of wealthy backers, whose priorities shape the research agenda. This study’s funding dynamics reflect a broader trend of prioritising projects that appeal to institutional interests, often at the expense of community-centred research. The lengthy, almost evasive, filibuster of a section on funding sources in the study hints at how these dynamics can obscure motivations. Whilst funding disclaimers in studies often assert that funders had no role in the study’s design or execution—this one included—funding is rarely, if ever, allocated to research that falls outside a funder’s interests. The influence of wealthy backers cannot be ignored, as their priorities often shape the narratives that research advances. These narratives frequently align with the funder’s goals rather than addressing the actual needs and priorities of the autistic community. This dynamic subtly but powerfully steers the focus of research, reinforcing agendas that may not reflect the lived realities of those being studied.

In this context, the IQ-based framework serves not only as a scientific proposal but as a mechanism to reinforce existing power structures. It risks sidelining the very individuals it claims to study, reducing their rich, multifaceted experiences to a sterile metric shaped by an agenda far removed from their realities.

A Brief Journey Around the World

The study collects and analyses other studies (it’s a meta-analysis) predominantly conducted in two significant but vastly different contexts: China and the UK. These countries’ contrasting cultural and systemic approaches to autism provide valuable insights into the biases that shape the research and its conclusions.

In China, autism is largely viewed through a cultural lens that emphasises family cohesion and societal harmony. Within this framework, neurodivergence is often framed as a disruption to balance—something to be ‘corrected’ or ‘cured.’ The push for therapies in China, many of which align with Western behavioural interventions, is pervasive and often driven by the idea of restoring a perceived sense of normalcy. This approach marginalises autistic identity, framing autism as an inherent failure to conform to societal expectations. Compounding this issue is a cultural undercurrent of panic regarding autism, likely fuelled by its perceived disruption to family cohesion and social harmony. This sense of urgency to ‘correct’ autism has made China a dominant force in autism research today, as the country channels significant resources into studies that prioritise compliance and intervention over understanding or acceptance (Su et al., 2019; Yu et al., 2020; Liao et al., 2018; Xu et al., 2018; Wang et al., 2023; Liu et al., 2024; Bie & Tang, 2015).

The UK presents a different but equally troubling picture. Autism is often framed as a burden on the National Health Service (NHS), a system chronically underfunded since Thatcher’s neoliberal policies in the 1980s. The current reality of the NHS—austerity-stricken and overwhelmed—has led to massive diagnostic backlogs and a push to limit diagnoses whenever possible. For many autistic people, particularly adults and those without the means to go private, seeking a diagnosis can feel like navigating an impossible maze designed to dissuade all but the most persistent. This systemic neglect perpetuates the idea that autism is something to be managed quietly, with minimal impact on public resources, rather than acknowledged and supported (Parr et al., 2024; Male et al., 2023; Rogers et al., 2016; Wigham et al., 2022; Preece & Lištiaková, 2020; Unigwe et al., 2017; Crane et al., 2016).

Both contexts reveal a shared tendency to marginalise autistic voices, albeit in different ways. In China, the emphasis is on correcting what is seen as deviation from social harmony; in the UK, it’s about minimising the ‘burden’ on an already strained healthcare system. Together, these cultural and systemic biases shape the meta-analysis, creating a framework that reflects the priorities of institutions rather than the lived realities of autistic people.

Understanding these contexts is crucial for critiquing the study’s agenda. It becomes clear that the proposed IQ-based framework isn’t born out of a genuine attempt to support autistic individuals but rather reflects global patterns of neglect, control, and marginalisation. As these biases seep into the academic discourse, they risk further erasing the diverse experiences of autistic people worldwide.

Final thoughts …

To wrap this up, this IQ-based framework is not a neutral scientific advancement but a thinly veiled attempt to marginalise autistic voices further. It prioritises a narrow, power-driven agenda that reduces autism to an intellectual metric, sidelining the lived experiences and diverse needs of our community. This approach is not just reductive; it is actively harmful, reinforcing stereotypes and justifying gatekeeping in support systems, all while aligning research with the interests of funders rather than those it claims to serve.

For too long, autistic people have been defined by frameworks imposed from the outside—frameworks that neither reflect nor respect our reality. This latest effort only deepens that trend, threatening to fragment our understanding of autism and diminish our collective identity.

But we don’t have to accept this narrative. I invite you, the readers, to join me in questioning and resisting these reductive approaches. Share your thoughts, your experiences, and your critiques. Let’s ensure that the autistic community’s voice—grounded in lived experience, diversity, and solidarity—is at the centre of the conversation about what it means to be autistic. Together, we can push back against these frameworks and advocate for a future that truly values and supports all autistic lives.