From Public Funds to Private Profits: The Twisted Path of Autism Research Money
In this third article of our series examining the Autism CARES Act of 2024, we turn our attention to a critical yet often overlooked aspect of ‘autism research funding:’ the pervasive influence of monopoly capitalism. At the heart of this issue lies the Bayh-Dole Act of 1980, a piece of legislation that fundamentally altered the landscape of publicly funded research in the United States. This act, ostensibly designed to promote the commercialisation of government-funded research, allows researchers at public institutions to patent and profit from discoveries made with taxpayer money. As an autistic adult deeply invested in the wellbeing of our community, I find the implications of this act particularly troubling when applied to ‘autism research.’
The Bayh-Dole Act has effectively created a system where public funds can be channelled into private gains, potentially skewing research priorities towards outcomes that are patentable and profitable, rather than those that might best serve the autistic community. This shift in incentives is not merely academic; it has real-world consequences for autistic individuals like myself and our families. When researchers are incentivised to pursue lines of inquiry that may lead to lucrative patents, areas of study that could yield immediate, practical benefits for autistic adults—such as improved support services or strategies for navigating neurotypical-dominated spaces—may be neglected. The result is a research landscape increasingly driven by the promise of financial reward rather than the pressing needs of the autistic community.
Incentive Misalignment
The misalignment of incentives created by the Bayh-Dole Act becomes starkly apparent when we examine the funding trends in autism research over the past decade. As an autistic researcher scrutinising these patterns, I find the implications deeply concerning. The above graph from the IACC Strategic Plan reveals a telling disparity: funding for biological and genetic research (Questions 2 and 3) has seen a dramatic surge, whilst support for services, supports, and lifespan issues (Questions 5 and 6) has remained comparatively stagnant.
This stark contrast is no coincidence. The potential for patent royalties inherent in biological and genetic research creates a powerful incentive for researchers to focus their efforts in these areas. The allure of developing patentable treatments or diagnostic tools—which could lead to substantial financial rewards—directs both attention and resources away from equally crucial, but less profitable, areas of study. As a result, we see a disproportionate emphasis on understanding ‘the biological underpinnings of autism,’ often with the implicit goal of ‘curing’ or ‘preventing’ a fundamental aspect of human neurodiversity.
Meanwhile, research into services, supports, and lifespan issues—areas that could have immediate, tangible benefits for autistic adults like myself—languishes. These crucial areas of study, which focus on improving quality of life and fostering independence for autistic individuals, are less likely to result in patentable, profitable outcomes. Consequently, they attract less funding and attention from researchers incentivised by the current system.
This misalignment of incentives has real-world consequences. As an autistic adult, I find myself navigating a world where immense resources have been poured into understanding the genetic markers of autism, yet practical support systems and services remain woefully underdeveloped. The promise of a patentable genetic test for autism seems to hold more appeal in our current research ecosystem than developing effective strategies to support autistic individuals in employment, housing, or social environments.
The irony is palpable: whilst researchers chase potentially lucrative breakthroughs in autism genetics, many autistic adults struggle with basic needs that could be addressed through targeted research into supports and services. This skewed prioritisation not only fails to address the immediate needs of the autistic community but also perpetuates a narrative that frames autism primarily as a biological ‘problem’ to be solved, rather than a natural variation in human neurology to be understood and accommodated.
Corporate-Academic Partnerships Are Not ‘Public-Private Partnerships’
As we delve deeper into the consequences of the Bayh-Dole Act, we encounter a particularly insidious aspect of its impact: the proliferation of corporate-academic partnerships in autism research. As an autistic individual observing these developments, I find the implications deeply troubling for our community.
The promise of patents and royalties has fostered a cosy relationship between academic institutions and pharmaceutical or biotech companies. This unholy alliance further skews research priorities, often at the expense of studies that could directly benefit autistic adults like myself. The revolving door between government, corporations, and academia exacerbates this issue, creating a self-perpetuating cycle of influence and profit that often sidelines the actual needs of autistic individuals.
We need only look at the recent discussions surrounding Dr Anthony Fauci’s patent royalties to understand the complex interplay between government-funded research and private profit. Whilst Dr Fauci’s case highlighted that government employees face caps on annual royalty earnings, with the majority of royalties going back to the government, it’s crucial to note that these restrictions don’t apply to university researchers. This disparity creates an even more potent incentive for academic researchers to pursue potentially profitable lines of inquiry. Unlike their government counterparts, university researchers can reap substantial personal financial rewards from patents resulting from their publicly funded work. This system not only encourages a focus on patentable outcomes but also potentially widens the gap between research priorities and the immediate needs of the autistic community.
In the realm of autism research, this translates to a disproportionate focus on genetic markers, brain imaging studies, and potential pharmaceutical interventions. These areas of study align neatly with the interests of biotech and pharmaceutical companies, who see the potential for lucrative patents and new drug markets. Meanwhile, research into housing options, support services, educational strategies, or employment assistance for autistic adults—areas that could have immediate, tangible benefits for our community—receives comparatively little attention or funding.
This situation bears an unsettling resemblance to the phenomenon Lenin described in his work on imperialism and monopoly capitalism that we discussed in yesterday’s article. The partnerships between academia, government, and corporations in autism research have created a kind of oligarchy—a small group of powerful entities that effectively control the direction of autism research and, by extension, the narrative around autism itself.
As Lenin observed, these oligarchies tend to prioritise their own interests over those of the broader population. In our case, the interests of academic institutions seeking prestige and funding, corporations seeking profits, and government agencies seeking to justify their budgets often overshadow the actual needs and desires of autistic individuals.
The result is a research landscape that feels increasingly disconnected from the lived experiences of autistic people. As an autistic person, I find myself wondering: how many more genetic markers need to be identified before we see substantial improvements in employment support for autistic adults? How many brain imaging studies will it take before we address the critical shortage of appropriate housing options for our community?
These corporate-academic partnerships, which are not classic ‘public / private partnerships,’ fueled by the promise of patents and royalties, have created a self-reinforcing system that perpetuates certain types of autism research at the expense of others. Breaking free from this cycle will require a fundamental reimagining of how we approach and fund autism research—one that places the voices and needs of autistic individuals at its centre.
Monopolistic Practices
The creation of monopolies through patents resulting from government-funded autism research is a deeply troubling aspect of our current system. As an autistic person, I find it particularly galling that publicly funded work can lead to private monopolies that potentially restrict access to things that could offer help for our community.
When researchers patent discoveries made through government-funded studies, they effectively gain exclusive rights to control the use and distribution of those innovations. In the context of autism research, this can mean monopolies on diagnostic tools or educational technologies. The implications of such monopolies are far-reaching and often detrimental to the very community the research was ostensibly meant to serve.
Consider, for instance, a hypothetical patented genetic test for ‘autism risk factors.’ Whilst such a test might be hailed as a breakthrough in some circles, its monopolised status could result in exorbitant costs, making it inaccessible to many autistic individuals and their families. Similarly, patented supports could be priced out of reach for a significant portion of the autistic community, creating a two-tiered system where only the wealthy can access them.
This monopolistic approach stands in stark contrast to the collaborative, open-access model that many in the autistic community advocate for. Me being me, I believe that advancements in autism research should be freely available to all who might benefit from them, not locked behind paywalls or restricted by patent rights (it’s also why accessible electronic versions of my books are available for free at your local public library).
Moreover, these monopolies can stifle further innovation. Other researchers or organisations may be prevented from building upon or improving patented technologies without paying hefty licensing fees. This not only slows the pace of progress but also concentrates the power to shape the direction of autism research in the hands of a few patent holders.
The irony is palpable: research funded by taxpayers, many of whom are autistic or have autistic family members, can result in supports or technologies that those same taxpayers may struggle to access due to monopoly-inflated prices. This perverse outcome underscores the fundamental misalignment between the profit-driven patent system and the needs of the autistic community.
As we critically examine the Autism CARES Act of 2024 and its predecessors, we must question whether this system of government-funded research leading to private monopolies truly serves the interests of the public. Are we not, in essence, paying twice for these advancements? Once through our taxes to fund the research, and again through inflated prices when we seek to access the resulting innovations?
The monopolistic practices enabled by our current research funding model represent a significant barrier to equitable access to autism-related innovations. As we move forward, it’s crucial that we advocate for alternative models that prioritise accessibility and community benefit over private profit. The health, wellbeing, and support of autistic individuals should not be held hostage to monopolistic practices born from publicly funded research.
Feedback Loop
The feedback loop created by successful patents and royalties in autism research is a pervasive and troubling phenomenon that I’ve observed with growing concern. As an autistic person, I find this self-reinforcing cycle particularly alarming, as it continually skews research priorities away from areas that could provide meaningful support for our community.
When researchers or institutions secure patents and begin receiving royalties from their autism-related work, they gain more than just financial rewards. These successes translate into increased prestige within academic and scientific circles, often leading to greater visibility, more speaking engagements, and heightened influence in determining future research directions. This enhanced status, in turn, makes it easier for these researchers and institutions to secure additional funding, both from government sources and private investors eager to back ‘proven winners.’
The result is a self-perpetuating cycle that continues to prioritise potentially profitable research over other areas. Studies that might lead to patentable outcomes—such as genetic markers or brain imaging techniques—receive disproportionate attention and resources. Meanwhile, research into areas like educational strategies, employment support, or improving daily living skills for autistic individuals languishes, as these topics are less likely to result in lucrative patents.
This feedback loop is further complicated by the rise of ‘evidence mills’ and 'paper mills’ in academic publishing. These dubious operations churn out substandard work that nonetheless gets published in certain journals, creating a shoddy ‘evidence base’ that is often cited in patent applications. This manufactured body of research can be used to bolster claims in patent applications, potentially leading to the granting of patents for interventions or technologies of questionable value.
Me bing me, of course I find this situation deeply frustrating. The research that could most directly improve our lives—studies on sensory-friendly environments or support systems for autistic adults—is often sidelined in favour of work that might yield the next patentable innovation. This skewed prioritisation not only fails to address our immediate needs but also perpetuates a narrative that frames autism primarily as a biological ‘condition’ to be measured, mapped, and potentially altered, rather than a natural variation in human neurology to be understood and accommodated.
Moreover, this cycle creates a sort of ‘autism research aristocracy’—a small group of well-funded, patent-holding researchers and institutions that wield outsized influence in shaping the direction of autism research. Their success in securing patents and royalties becomes a self-fulfilling prophecy, attracting more funding and resources, while researchers focusing on less ‘profitable’ but potentially more beneficial areas struggle to gain recognition and support.
This feedback loop, bolstered by the questionable practices of evidence and paper mills, threatens to create an echo chamber in autism research. It risks drowning out diverse perspectives and innovative approaches that don't align with the patentable, profit-driven model. As we critically examine the Autism CARES Act of 2024 and its impact, we must question whether this self-reinforcing system truly serves the interests of autistic individuals, or whether it primarily benefits a select group of researchers and institutions at the expense of the broader autistic community.
Impact on Autistics
As an autistic adult, I find the impact of monopoly capitalism in autism research funding and outcomes to be profoundly disturbing and, at times, existentially threatening. The system we’ve created, ostensibly to support and understand autism, often seems more focused on profiting from our existence than improving our lives.
The disproportionate funding allocated to biological and genetic research has led to a plethora of patented biological interventions and diagnostic tools. However, this narrow focus comes at the expense of developing practical support systems and services that could dramatically improve the daily lives of autistic adults like myself.
Consider the possibility of an eventual biological test for autism. Whilst some might hail this as a breakthrough, the reality is far more complex and potentially harmful. Such a test, likely protected by patents and driven by profit motives, would probably be priced out of reach for many who need it most. Instead of clearing the massive worldwide diagnostic backlog, it could exacerbate existing inequalities, making timely diagnosis even more of a privilege than it already is.
Moreover, the emphasis on biological interventions and early detection sends a chilling message to the autistic community. When vast sums of money are poured into research that could potentially prevent people like me from existing, it communicates that our lives are viewed as problems to be solved rather than experiences to be understood and supported. This approach is deeply rooted in the eugenic mindset that still pervades much of academia and the medical establishment.
The dearth of funding for practical support systems and services for autistic adults is a glaring oversight that affects our daily lives. Whilst researchers chase patents for genetic markers or brain imaging techniques, many of us struggle with underemployment, inadequate housing options, and a lack of appropriate support services. The skills and accommodations that could help us navigate a neurotypical-dominated world—effective communication strategies, sensory-friendly environments, employment support—receive comparatively little attention or funding.
Perhaps most insidiously, this system of monopoly capitalism in autism research perpetuates harmful narratives about autism itself. By framing autism primarily as a biological condition to be detected, prevented, or altered, it reinforces the idea that our neurodiversity is inherently problematic. This perspective not only impacts how society views us but can also negatively affect our self-perception and mental health.
The entrenched nature of this system, where academia sees no ethical quandary in profiting off the backs of vulnerable populations, is a stark reminder of how far we still have to go in truly valuing neurodiversity. It’s a bitter irony that the very institutions claiming to support and study us are often the ones benefiting most from our existence, while doing little to improve our actual quality of life.
As we continue to examine the Autism CARES Act and its implications, we must confront this uncomfortable truth: the current system of research funding and outcomes, driven by monopoly capitalism, is failing autistic adults. It prioritises potential profits over practical support, reinforces harmful narratives about autism, and perpetuates a cycle of marginalisation and misunderstanding. If we truly want to support the autistic community, we need a radical reimagining of how autism research is funded, conducted, and applied—one that centres the voices and needs of autistic individuals themselves.
Final Thoughts and Policy Recommendations
As we conclude today’s examination of the Act and its broader implications, it’s clear that substantial policy changes are needed to rebalance the incentives in autism research. As an autistic adult and researcher, I’ve experienced firsthand the challenges of pursuing studies that directly benefit our community but don’t align with the profit-driven model that currently dominates the field.
My own experiences serve as a stark illustration of the current system’s failings. Despite the clear need for research on autistic college student attrition—with more than two-thirds of first-year autistic students voluntarily withdrawing from school—I was unable to secure grant funding for this crucial study. Instead, I was forced to self-fund the research, doubling the time to defense and publication. This delay not only impacted my career but, more importantly, postponed the dissemination of information that could have immediately benefited autistic students and the institutions serving them.
Similarly, my current research efforts on alexithymia, hyper-empathy, and classroom ecologies—eventually aimed at informing teachers on managing the “energy of the room” and assisting students in developing self-regulation strategies—struggle to find grant funding. This work, which could significantly reduce the number of autistic students experiencing post-school meltdowns, apparently lacks the profit potential to attract financial support in our current system.
These experiences underscore the urgent need for policy changes. I propose the following recommendations:
Mandatory Allocation for Non-Patentable Research: A significant percentage—I suggest at least 51%—of all autism research funds should be allocated to non-patentable, directly beneficial studies for autistic individuals across the lifespan. This would ensure that practical, quality-of-life improving research isn’t sidelined in favour of more ‘profitable’ endeavours.
Autistic-Led Research Initiatives: Establish a dedicated funding stream for research led by autistic individuals. Our lived experiences and perspectives are invaluable in identifying and addressing the most pressing issues facing our community.
Revise Patent Policies: Implement stricter guidelines for patenting outcomes of publicly funded research. This could include requirements for affordable licensing to ensure that any resulting innovations are accessible to those who need them most (yes, I know. But I don’t think the US will ever do away with patents and private property).
Diversify Funding Evaluation Panels: Ensure that autistic individuals, family members (yes, I know that this means ‘autism moms’), and professionals working directly with the autistic community are well-represented on panels evaluating research proposals. This would help prioritise studies with direct, practical benefits.
Long-Term Impact Assessment: Require funded studies to demonstrate potential long-term benefits for autistic individuals, not just short-term research outputs or potential commercial applications.
Open Access Mandate: All publicly funded autism research should be required to be published in open-access formats, ensuring that findings are freely available to autistic individuals, families, and professionals.
Collaborative Research Networks: Encourage and fund collaborative research networks that bring together autistic individuals, researchers, educators, and service providers to ensure research addresses real-world needs.
Implementing these policy changes would mark a significant shift towards a more equitable, effective, and ethical approach to autism research. It would prioritise the actual needs of autistic individuals over potential profits, and ensure that the voices and experiences of autistic people are central to the research process.
As we move forward, it’s crucial that we continue to critically examine and challenge the systems that shape autism research and support. The Autism CARES Act of 2024, whilst perhaps well-intentioned, perpetuates a model that often fails to serve the autistic community effectively. By advocating for these policy changes, we can work towards a future where autism research truly cares for and empowers autistic individuals throughout their lives.