Misplaced Treasure: Reassessing the Impact of Autism CARES Act Funding
In our ongoing examination of the Autism CARES Act, we turn our attention to a critical evaluation of the research previous iterations of the act have funded and their tangible impact on the autistic community. As an autistic adult and independent researcher, I find it crucial to scrutinise how these substantial public investments translate into practical benefits for individuals on the spectrum. The Act, whilst well-intentioned, has shaped the landscape of autism research in ways that merit careful consideration. As the adage goes, ‘For where your treasure is, there your heart will be also’ - a principle that, when applied to government funding of autism research, reveals much about societal priorities and their consequences for the autistic population.
Over the years, we’ve witnessed striking trends in how research funds are allocated across various domains of autism studies. These patterns, vividly illustrated in recent funding data, raise pressing questions about the alignment between research priorities and the day-to-day needs of autistic individuals. From improving support services to enhancing quality of life across the lifespan, the practical implications of this research - or lack thereof - ripple through our community, particularly in underserved rural areas.
As we delve into this analysis, we must consider not only the volume of funding but also its direction and the real-world outcomes it generates. This critique aims to spark a crucial dialogue about how we can better serve the diverse needs of the autistic community through more balanced, impactful research initiatives.
Historical Context and Funding Trends
The Autism CARES Act, initially passed in 2006 as the Combating Autism Act and reauthorised multiple times since, represents a significant federal commitment to autism research and services in the United States. Its stated objectives encompass a broad spectrum of goals, from advancing our understanding of autism to improving screening, interventions, and support services. However, as we delve into the Act’s implementation over the years, a stark disparity in research priorities becomes evident—a disparity that appears not as an oversight, but as an intentional feature of the system.
Examining the IACC Strategic Plan funding graph from 2008 to 2020 (above) reveals a telling narrative. The allocation for biology and genetic research (Questions 2 and 3) has seen a dramatic and sustained increase, particularly from 2014 onwards. In stark contrast, funding for services, supports, and lifespan issues (Questions 5 and 6) has remained stubbornly low and stagnant. This imbalance is not a mere coincidence but reflects a deliberate prioritisation of certain research avenues over others .
As touched upon in our previous discussion on profiteering and patents, this funding disparity aligns seamlessly with a system that values patentable, potentially profitable research over studies that might yield more immediate, practical benefits for autistic individuals. The consistent underfunding of research into services and life-span issues suggests a systemic indifference to the pressing, day-to-day challenges faced by the autistic community.
Those steering the ship of autism research funding appear to view this imbalance not as a flaw to be corrected, but as a core feature of their strategy. The persistent nature of these funding trends, despite repeated reauthorisations of the Act, indicates a deeply entrenched bias towards biological and genetic research—a bias that continues to shape the landscape of autism research, often at the expense of studies that could more directly improve the lives of autistic individuals.
Biological vs. Practical Impact Research
The IACC Strategic Plan categorises autism research into seven key areas, each represented by a strategic question. A closer examination reveals a complex landscape, with biological research dominating, whilst practical impact studies receive comparatively less attention and funding.
Questions 2 (Biology) and 3 (Genetic and Environmental Factors) are firmly rooted in biological research. Question 5 (Services and Supports), whilst including some biological and environmental research components, primarily focuses on ‘interventions’ and ‘support strategies.’ Question 6 (Lifespan Issues) addresses practical, real-world concerns for autistic individuals throughout their lives.
As I observed in the previous article, the prioritisation of patentable research—predominantly in the biological and genetic domains—has led to a significant imbalance in funding allocation. This bias towards research with potential commercial applications, whilst potentially lucrative for institutions and pharmaceutical companies, often fails to translate into immediate benefits for the autistic community.
The biological research categories, heavily funded and rapidly growing, focus on understanding the underlying mechanisms of autism at a cellular and genetic level. Whilst this knowledge is undoubtedly valuable from a scientific perspective, its direct impact on improving the daily lives of autistic individuals remains limited. Conversely, the more practically-oriented categories, particularly Question 6, remain chronically underfunded. These areas encompass critical issues such as developing effective support services, improving educational and employment outcomes, and addressing the unique challenges faced by autistic adults—areas that could yield immediate and tangible benefits for our community.
This funding disparity has far-reaching effects. Whilst we’ve seen an explosion of knowledge about the biology of autism (‘reversal’ study aside), we’ve made comparatively little progress in developing and implementing effective support systems, improving access to services, or addressing the high rates of unemployment and mental health challenges in the autistic community. The focus on finding biological ‘markers’ or potential genetic ‘risk factors’ for autism also raises ethical concerns, potentially reinforcing a deficit-based view of neurodiversity.
Moreover, the underfunding of lifespan issues is particularly troubling. As an autistic adult nearing my ‘best by date,’ I can attest to the dearth of research and support focused on autistic individuals beyond childhood. This gap leaves many of us navigating adulthood with insufficient resources and understanding, a situation that could be significantly improved with more balanced research priorities.
In essence, the current funding landscape reflects a system more invested in understanding autism at a molecular level than in supporting autistic individuals in navigating a neurotypical world. This imbalance urgently needs addressing if we are to truly serve the needs of the autistic community.
Case Studies of Funded Research
To truly understand the implications of the Act’s funding priorities, we must examine specific examples of funded research and their outcomes. The 2022 Summary of Advances in Autism Research provides a snapshot of recent studies, but the crucial question remains: how have these studies tangibly improved the lives of autistic individuals?
In the realm of biological research, studies like “Broad transcriptomic dysregulation occurs across the cerebral cortex in ASD” and “Infant Visual Brain Development and Inherited Genetic Liability in Autism” have undoubtedly advanced our scientific understanding. However, the practical benefits for autistic individuals remain elusive. Whilst these studies contribute to our knowledge of autism’s biological underpinnings, they have yet to translate into interventions or supports that meaningfully impact daily life. Moreover, the focus on genetic ‘liability’ raises concerns about perpetuating a deficit-based view of autism.
The study on “Associations Between Pregnancy-Related Predisposing Factors for Offspring Neurodevelopmental Conditions and Parental Genetic Liability” falls into a similar category. Whilst it may provide insights into risk factors, it does little to improve outcomes for autistic individuals already navigating the world. The emphasis on ‘predisposing factors’ and ‘genetic liability’ could potentially fuel anxiety among expectant parents without offering practical solutions or support.
On the practical impact side, studies like “Provider and Caregiver Satisfaction with Telehealth Evaluation of Autism Spectrum Disorder in Young Children During the COVID-19 Pandemic” appear more immediately relevant. However, we must question the long-term impact. Has this research led to sustained improvements in telehealth services for autism diagnosis beyond the pandemic? Or was it a one-off study with limited generalisability?
The research on “Disparities in Early Intervention Program Participation by Children With Autism Spectrum Disorder” highlights a critical issue, but the key question remains: have the suggested strategies for improvement been implemented, and if so, to what effect? Too often, such studies identify problems without leading to systemic changes.
Perhaps most pertinent to autistic adults is the study on “Vocational Outcomes in ASD.” Whilst it addresses a crucial area—employment challenges—we must ask whether it has resulted in tangible improvements in employment support or outcomes for autistic adults. Has this research informed policy changes or led to the development of more effective vocational programmes?
The stark reality is that many of these studies, whilst academically rigorous, often lack follow-through or fail to generalise beyond their specific contexts. The biological studies, whilst expanding our knowledge base, have yet to yield practical interventions. The more applied research, though addressing critical issues, frequently fails to catalyse systemic changes or widespread improvements in support and services.
This pattern underscores a fundamental disconnect between research outputs and real-world outcomes for the autistic community. Whilst these studies contribute to the academic corpus, their impact on the daily lives of autistic individuals often remains limited. As we continue to fund and conduct research under the Autism CARES Act, we must prioritise not just the generation of knowledge, but its practical application and long-term impact on the autistic community.
Real-World Consequences for Autistic Individuals
The funding disparity in autism research has profound real-world consequences for the autistic community. With recent research suggesting that autistic individuals comprise between 2-5% of the human population (Hoerricks, 2023), the scale of these consequences in the United States alone is staggering. Despite the growing body of biological and genetic research, we’ve seen little improvement in the areas that most directly impact autistic lives: employment, housing, and overall quality of life.
Unemployment among autistic adults remains disproportionately high. Whilst precise figures vary, studies consistently show that a significant majority of autistic adults are either unemployed or underemployed. This isn’t for lack of ability or desire to work; rather, it reflects a systemic failure to create inclusive workplaces and provide appropriate employment support. As one autistic adult shared with me in a LinkedIn message, “I have two degrees, but I’ve been unemployed for years. Employers don’t know how to accommodate my needs, and there’s no support to bridge that gap.”
Housing insecurity is another critical issue. Many autistic adults struggle to find and maintain suitable housing, with a disturbing number experiencing homelessness. The lack of research and funding directed towards developing supportive housing models tailored to autistic needs is keenly felt. An autistic individual I spoke with recently in my rural part of the world said, “I can’t live independently without some support, but I don’t need full-time care. There's nothing in between, so I’m stuck living with my ageing parents, worried about what will happen when they’re gone.”
Perhaps most alarmingly, we’re seeing a disproportionate representation of autistic individuals in the prison population. This overrepresentation often stems from misunderstandings, lack of support, and a criminal justice system ill-equipped to recognise and accommodate neurodiversity.
What’s frustrating is that the autistic community has been clear about its needs. There’s a loud and consistent call for practical, immediate solutions: supportive housing, stable employment opportunities, and reliable income support. Yet, these areas remain woefully under-researched and underfunded.
Consider the potential impact of a comprehensive study on Universal Basic Income (UBI) that includes a significant cohort of autistic participants. Such research could provide invaluable insights into how guaranteed income might alleviate many of the economic and social pressures faced by autistic individuals. It could explore how UBI might facilitate access to appropriate housing, reduce employment-related stress, and provide the financial stability necessary for autistic adults to thrive.
Instead, we see millions poured into genetic studies that, whilst scientifically interesting, do little to improve the immediate circumstances of autistic individuals. As one autistic self-advocate pointedly remarked in a comment to one of my IG posts, “I don’t need to know which genes made me autistic. I need affordable housing and a job that doesn't burn me out.”
The real-world impact of this funding disparity is a community left behind—struggling with basic needs while research that could make a tangible difference remains underfunded and unexplored. It’s a stark reminder that our research priorities must shift to align with the actual, expressed needs of the autistic community. Until we bridge this gap between research focus and real-world needs, we’ll continue to see high rates of unemployment, homelessness, and marginalisation among autistic individuals, regardless of how much we understand about the genetics of autism.
Where do we go from here?
Whilst yesterday’s article proposed specific policy changes to address funding disparities in autism research, it’s crucial to recognise that these changes cannot exist in a vacuum. To truly improve the lives of autistic individuals, we need a fundamental shift in societal values and priorities.
First and foremost, we must acknowledge and enshrine basic human rights for all, including autistic individuals. This means recognising housing, food, and clean water not as privileges, but as fundamental human rights. The psychological toll of insecurity in these basic needs cannot be overstated. As Matthew 6:21 suggests, our government’s spending priorities reflect its values, and currently, those values do not adequately prioritise the wellbeing of autistic citizens.
We need a firm, unequivocal statement from the government affirming the inherent worth and dignity of autistic individuals. This statement must reject the harmful narratives that frame autism as a puzzle to be solved or a problem to be prevented. Instead, it should embrace neurodiversity as a valuable aspect of human variation. The psychological harm inflicted by the current deficit-based narrative is profound, contributing to high rates of anxiety, depression, and suicidal ideation among autistic individuals.
Moreover, we must address the societal attitudes that create barriers for autistic individuals. This includes challenging workplace discrimination, promoting inclusive education practices, and fostering a culture that values diverse ways of thinking and communicating. Without these broader societal changes, even the most well-intentioned policy reforms will fall short.
The government must also commit to long-term, sustainable funding for support services and community-based programmes. This commitment should extend beyond election cycles, ensuring continuity of care and support for autistic individuals throughout their lives.
Furthermore, we need to prioritise autistic voices in all decision-making processes that affect the autistic community. This means not just consultation, but active leadership roles for autistic individuals in research, policy-making, and programme design.
Lastly, we must reframe our understanding of ‘success’ in autism research and support. Instead of measuring success by the number of papers published or patents filed, we should evaluate our progress based on tangible improvements in quality of life for autistic individuals – employment rates, housing stability, mental health outcomes, and self-reported life satisfaction.
These societal changes are prerequisites for any policy reforms to have meaningful, lasting impact. Until we address these fundamental issues, we risk implementing surface-level changes that fail to address the root causes of the challenges faced by the autistic community. It’s time for our society’s heart, as evidenced by where it spends its treasure, to align with the true needs and inherent value of autistic individuals.