Gut Feelings: Millions Spent on Pointless Autism Studies
Exploring the Costly, Misguided Autism Research That Leaves the Community Behind
A recent study on the gut microbiome in autistic individuals and its relation to the presence of psychobiotic bacteria, whilst intriguing, warrants critical examination from a standpoint that respects neurodivergent identities and challenges the narrative perpetuated by the research and funding priorities.
First and foremost, the language embedded in both the study and the surrounding discourse underscores a deeper issue. The use of terms like “neurotypical” versus “neurodivergent” subtly reinforces the concept that the neuro-majority is the ‘typical’ human state, relegating those of us who are autistic to the status of ‘atypical.’ This isn’t just semantics; it’s the same tired story dressed up in clinical terms, perpetuating the notion that one way of being is ‘normal’ whilst others are deviations to be scrutinised or fixed. Framing autistic traits as “symptoms” pathologises what are, in reality, fundamental aspects of who we are—our ways of existing and processing the world.
Now let’s talk again about the Autism CARES Act and the funding it champions. Instead of directing resources toward tangible support that could actually improve our lives—such as making housing, healthcare, and employment accessible—funding is funnelled into studies that chase the fantasy of ‘curing’ autism. This pursuit aligns neatly with the ‘cures’ movement, which is little more than a billboard announcing that there’s no place for people like us unless we’re made to conform. This is the dominant neurotype waving its flag, declaring that it’s willing to spend millions researching why we’re different but not a dime helping us survive in a society stacked against us.
These studies might make researchers feel clever and progressive. But let’s be honest: they don’t feed us, house us, or offer job opportunities. They don’t address the fact that most autistic adults are under- or unemployed, many living well below the poverty line in a society that loves to tokenise our ‘quirks’ but won’t hire us. The emphasis on gut microbiome tinkering signals, yet again, that the problem to be solved is autism itself—not the abysmal lack of systemic support or the structural barriers that keep us marginalized.
Imagine the change if that same funding went into practical support—accessible mental health services, job training programs that accommodate our ways of learning, or policies that ensure we’re not one bad month away from homelessness. But no, it’s more important to prove that our brains are wired differently because of bacteria or some other microscopic scapegoat. It’s a clever distraction that ensures researchers and policymakers don’t have to confront the reality that they’re not doing enough to help us live, let alone thrive.
The Autism CARES Act’s funding choices are a loud proclamation: “We’d rather search for the reasons you’re different than help you succeed as you are.” This narrative doesn’t just miss the mark—it’s demeaning and dangerous. It tells autistic people that our worth is conditional on whether we can be made more palatable to the neuro-majority.
It’s time to stop the cycle of dehumanising research and start investing in what truly matters: supporting autistic individuals in real, impactful ways. Fund the programs that will keep us housed, healthy, and employed. Listen to what we actually need. Until then, the research mills will keep churning out papers while we keep fighting to survive in a world that treats our very existence as a problem to be solved.
The Hype Around Psychobiotics: A Snake Oil Repackaged?
The concept of psychobiotic bacteria, touted as a breakthrough in addressing mental health and neurodevelopmental conditions, is the latest in a long line of quackery cloaked in scientific jargon. The term itself emerged in 2013 when Dinan, Stanton, and Cryan introduced it as a way to frame certain probiotics that purportedly impact the gut-brain axis. The idea is compelling: ingest these ‘magic’ bacteria and, voila, mental health improvements will follow. But let’s scrutinise this claim—where are the rigorous, double-blind, placebo-controlled studies backing this up? Spoiler: they’re few and far between.
Psychobiotics have been hailed as novel and promising, but without solid, replicable evidence, these claims teeter dangerously close to snake oil territory. The industry sees the potential for lucrative supplements, branding them as keys to wellness that promise to make neurodivergent individuals ‘less different.’ Is the endgame of studies like this one to pave the way for a supplement that will suddenly turn autistic individuals into ‘valid’ members of the neuro-majority? Or does it lay the groundwork for a more sinister prospect—using gut microbiome markers to assess a fetus’s ‘risk’ of autism and advising parents to terminate pregnancies, echoing the abhorrent logic of Aktion T4 that positions erasure as compassion?
This isn’t hyperbole. The ‘cures’ narrative insidiously feeds into a mindset that denies our right to exist as we are. It promotes a future where the focus isn’t on fostering inclusion and understanding, but on selective prevention—a eugenics-adjacent path veiled in the language of health and compassion. The real tragedy? Whilst these speculative studies rake in funding, the actual, lived struggles of autistic people remain unaddressed. Where are the policies that fight our 80% unemployment rate or help us navigate life well below the poverty line? Not in these journals.
Until the research world shifts its focus from ‘curing’ us to empowering us, psychobiotics will remain a symbol of misplaced priorities—another chapter in a story that keeps us on the margins while claiming to understand us.
The Cost of Producing This Study: A Look Behind the Curtain
Let’s dissect the financial and resource drain that studies like this one represent. The production of such research isn’t a small undertaking. We’re talking about an amalgamation of research costs, including labor, lab expenses, and equipment:
Research and Labor Costs: Academic researchers, postdoctoral fellows, lab technicians, and administrative staff need salaries. With competitive rates at established research institutions, even a moderate team could cost hundreds of thousands in annual wages.
Lab and Equipment Costs: High-precision equipment like quantitative real-time PCR machines, centrifuges, and refrigeration units for sample storage can cost anywhere from tens of thousands to hundreds of thousands. Maintenance and calibration add to these expenses.
Sample Collection and Analysis: Transporting and preserving biological samples require specialized protocols. This step alone involves costs related to extraction kits, reagents, and other consumables, which can add tens of thousands more.
Data Analysis and Software: Sophisticated software for analyzing genomic data, running statistical models, and interpreting results can command licensing fees in the tens of thousands. Additionally, time spent on analysis by skilled bioinformaticians further inflates the cost.
Institutional Overhead: Universities and research institutes typically tack on overhead costs—expenses for infrastructure and administration that are built into grant proposals. This can be an additional 20-50% of direct project costs.
All told, a study like this one could easily reach into the millions when considering the comprehensive investment in people, tools, and resources. And to what end? To hypothesise over gut bacteria correlations whilst the tangible support needs of autistic individuals are left in the dust. This isn’t just an inefficient use of funds; it’s a stark reminder of where priorities lie: not with the community, but with the quest for the next publishable paper.
Imagine if even a fraction of this budget were redirected to programs that provide direct, meaningful support to autistic people. It’s not hard to picture a world where we prioritize human needs over petri dish revelations—but until that shift happens, studies like these will continue to garner funding while real people continue to struggle.
Final thoughts …
Ah, the grand spectacle of modern research: millions poured into a study that reveals that—brace yourself—gut bacteria might be different in autistic people! Groundbreaking. Truly, this is the revelation that will change lives. Except, wait, it won’t. Because what do we, the autistic community, get from this revelation? A prescription for an expensive supplement that may or may not work, marketed as the next miracle fix? How charitable.
Picture the funding pitch: “We’re going to spend millions dissecting poop samples and running genomic analyses to prove that, yes, bacteria exist.” It’s the kind of research premise that, if you squint hard enough, starts to sound like satire itself. Are we to believe that this is the key to our liberation? That understanding our microbiome is the secret sauce that will integrate us seamlessly into society? Not likely.
And whilst researchers celebrate their publications, we’re left here—wondering if these millions will ever trickle down into things like, oh, rent assistance, job training, or mental health services. Spoiler: they won’t. The money vanishes into conference fees, grant applications, and lab coats while we watch, clutching our outdated resources, and trying to stretch our disability cheques past the poverty line.
So, what’s the end goal? A slick probiotic supplement with a hefty price tag that claims to make us more digestible to the neuro-majority? Or maybe we’re priming the pipeline for a future where parents can ‘compassionately’ decide to avoid the inconvenience of an autistic child altogether. But sure, let’s applaud the ingenuity of it all.