From Treatment to Support: Why Autism Research Needs a Real-Life Approach
Autism research has long focused on “treating” autistic “traits,” with a predominant emphasis on interventions aimed at modifying behaviours deemed atypical by neurotypical standards. From behavioural therapies to pharmacological studies, a substantial portion of funding is directed toward “curing” or altering the inherent “traits” of autism, rather than supporting autistic individuals in navigating real-life challenges. This approach, exemplified in the recent oxytocin research explored in Psychoneuroendocrinology, represents a deep-seated prioritisation of treatment over tangible support. In the paper, the researchers critically examine how oxytocin studies aim to shift autistic social and routinised behaviours, highlighting that such goals reflect neurotypical biases more than autistic needs.
Despite the millions of dollars poured into these studies in the US, autistic individuals continue to face substantial, unmet needs in daily life. Issues such as securing employment, accessing stable housing, and managing sensory sensitivities in public spaces remain largely unsupported. Many autistic individuals struggle to find mental health services, adaptive education resources, or assistance with the challenges they face in sensory-rich environments. The disconnect between research funding priorities and the practical needs of autistic people is stark. Whilst these studies continue in their quest to alter or “normalise” autistic behaviours, real lives are impacted by inadequate support structures, with autistic people left to face a world ill-prepared to accommodate their experiences. This misplaced focus in research diverts essential resources from initiatives that could genuinely improve quality of life, emphasising the urgent need to shift autism research away from treatment and toward meaningful, practical support.
The Treatment Paradigm in Autism Research
The prevailing autism research landscape is characterised by a treatment paradigm that prioritises modifying or reducing autistic ways of being through behavioural and pharmaceutical interventions. Much of this research operates under the assumption that the autistic way of being is a problem to be mitigated, with little regard for the unique identities and needs of autistic individuals. The emphasis remains on making autistic people conform to the standards of the neuro-majority rather than respecting their inherent ways of being, sending the unspoken message that there is simply “no place for autism” in today’s society. This is especially evident in the United States, where the AutismCARES Act channels vast amounts of funding into research-driven initiatives rather than support-based services. The Act’s focus on ‘research’ has opened the door for ‘Big Autism’—a term describing organisations and institutions profiting from autism funding—to seize on autism as a lucrative funding opportunity. This has given rise to a significant body of what can only be described as junk research, often focused more on profitable studies than practical support.
One particularly troubling aspect of this treatment-centric approach is the extensive reliance on animal models, including rodent studies, to explore complex human behaviours associated with autism. Such methods, whilst cost-effective, fail to capture the intricacies of autistic experience and social complexity. Findings from these studies are often misapplied to humans, leading to ineffective, even damaging, interventions. Oxytocin treatments are one example, where attempts to use the hormone to “correct” social behaviours in autistic individuals reveal a deeper agenda of promoting compliance with the social and cultural norms of the neuro-majority rather than addressing genuine wellbeing. These kinds of interventions reflect a misunderstanding of autism itself, seeing compliance as a marker of success rather than an imposition on autistic identities. This ‘treatment paradigm’ continues to dominate, diverting both resources and attention from what would genuinely benefit autistic individuals: support in managing daily challenges and embracing their authentic selves.
Why Real-Life Support is Essential
The real needs of autistic people are largely overlooked by research that emphasises “treatment” over practical support. Autistic people often face significant challenges navigating a world that is not only unsuited to their needs but frequently hostile to their presence. Sensory sensitivities are a prime example: overwhelming sounds, smells, lights, and textures in public spaces can lead to severe stress, anxiety, and even physical pain, yet public infrastructure rarely accommodates these needs. Social systems—from healthcare to education and employment—are equally challenging to navigate, designed primarily for users from the neuro-majority with little consideration of autistic experiences. Managing daily routines becomes a demanding task when the world around you does not acknowledge or respect your needs.
Rather than focusing on treatments to forcefully modify the autistic way of being, research should prioritise efforts that enhance the quality of life for autistic individuals. Helping people access resources, develop meaningful social connections, and achieve independence holds far greater value than attempts to “normalise” autistic behaviour. As I argued in my 2018 dissertation, the focus must shift from altering core characteristics to providing tangible, beneficial support. Improving quality of life means creating environments that respect autistic ways of being, not suppress them.
There are many areas where support is more effective than treatment. Public spaces can be adapted with sensory-friendly accommodations to lessen sensory overload, and autism-inclusive education can be designed to support various learning styles without forcing students into standardised moulds. Employment opportunities should offer fair, living wages and conditions that acknowledge and respect neurodivergent workers, whilst healthcare services must be accessible and adapted to the specific needs of autistic individuals. These practical measures are where true progress lies, in contrast to a treatment paradigm that fails to address the real-life challenges autistic people face every day.
The Case Against “Fixing” Autism
Among autistic individuals, there is widespread opposition to the notion of being “fixed” or “cured.” The idea of fixing implies a fundamental flaw in autistic ways of being, an assumption that many in the autistic community - myself included - rightly reject. This sentiment is grounded in the understanding that “traits” described by the dominant neuro-majority as “symptoms” are, in reality, intrinsic aspects of autistic identity and expression. Terms like “traits” pathologise core ways of thinking, feeling, and engaging with the world, marking them as targets for elimination rather than expressions of a distinct neurodivergent experience. The autistic community overwhelmingly advocates for acceptance of these natural variations, pushing back against the reductive view that autism is a set of deficits.
Deficit-based frameworks in research reinforce this harmful mindset by framing autism as a series of problems to be managed or solved. These models fail to respect autism as a valid neurotype with its own strengths, values, and contributions. Instead of recognising the ways in which autistic individuals positively impact the world, these frameworks focus on eradicating traits deemed inconvenient to neurotypical standards. This approach not only stigmatises autistic people but fosters a research culture that prioritises compliance and conformity over wellbeing and autonomy.
The focus on “fixing” autism drains resources from projects that could make meaningful improvements in autistic lives. Whilst countless funds are directed toward eliminating behaviours, essential support in areas like employment, mental health, and housing remains underfunded. By shifting away from deficit-oriented research, resources could instead be used to help autistic individuals thrive in a world that celebrates neurodiversity.
Examples of Research That Supports Autistic Lives
Research that genuinely supports autistic lives offers a stark contrast to the deficit-focused studies aimed at “treating” autism. In my 2018 dissertation, I highlighted four key areas to enhance the experience of autistic college students. The study offered practical solutions to help autistic students navigate the complexities of higher education and receive support all the way through graduation. It identified the importance of providing sensory accommodations, such as independent housing for autistic students—not only for those in their third or fourth years. It also addressed the campus power dynamics where autistic students often arrive more knowledgeable than their professors, examining the reactions and challenges this disparity can create. Moreover, the study called for an accessible curriculum with dedicated supports and acknowledged that many autistic individuals opt to pursue college later in life. These findings underscore how targeted support can make a transformative difference, fostering success in educational environments that are frequently unaccommodating to neurodivergent needs.
Similarly, my book No Place for Autism? critically examines the medical model of autism education found in my teacher preparation programme and the onboarding materials provided by my school district as a special education teacher. Compiling 30 pages of current references, the book offers an alternative, support-based model that values neurodivergent perspectives and respects autistic ways of learning. It underscores the need to move beyond viewing autism as a problem to be managed, advocating instead for inclusive practices that value neurodiversity. This shift allows educators and others to better engage and empower autistic people rather than pressuring them to conform to the norms of the neuro-majority.
On a larger scale, the Buckland Review in the UK provides a compelling model for employment and independence among autistic adults. The review outlines specific, actionable recommendations for improving workplace accommodations, enhancing job retention, and providing necessary social supports—yet similar initiatives remain absent in the United States. Whilst the AutismCARES Act funds a significant amount of “autism research,” it misses an opportunity to support the kinds of practical, life-enhancing programmes the Buckland Review endorses. By funding and implementing such research, the U.S. could foster real change, directly addressing the needs of autistic adults and opening doors to stable employment and self-sufficiency. This kind of research shows the tangible impact of prioritising autistic lives over outdated notions of treatment.
The Role of Participatory Research
Participatory research is an approach that actively involves the individuals being studied in every stage of the research process, from design to implementation to interpretation. For autism research, this means that autistic individuals have a significant say in the goals, methods, and outcomes of studies that directly affect their lives. It goes beyond simply including autistic people as subjects; participatory research invites autistic researchers, professors, and community members to collaborate on Institutional Review Boards (IRBs), in study design, and throughout the research framework. The principle here is straightforward but powerful: “nothing about us without us.” True participation means that autistic voices are heard and respected at all levels, ensuring that research reflects the real priorities and values of the autistic community.
The benefits of inclusive research are profound. When autistic individuals are directly involved, studies produce outcomes that are not only relevant but also deeply aligned with the needs of those they aim to serve. Traditional autism research often misses these marks, focusing on modifying behaviours rather than supporting autistic people in practical ways. Inclusive research, by contrast, promotes socially valid outcomes that genuinely address the challenges autistic people face, making findings applicable and beneficial in the real world.
Empowerment is at the heart of participatory research. By incorporating autistic perspectives and expertise, this approach validates autistic lived experience as essential to understanding autism itself. It shifts the balance of power, allowing autistic people to influence the way their identities are studied, discussed, and represented. Participatory research transforms the research process into a collaborative effort, fostering outcomes that support, rather than undermine, autistic ways of being.
The AutismCARES Act and ‘Autism Moms’
The so-called “cures” movement within the autism community is dominated by influential voices, often from groups of self-identified “autism moms,” who advocate for eradication strategies under the guise of treatment. In this culture, autism is framed as a tragedy from which children must be “rescued,” leading parents to consent to experimental and, in many cases, harmful treatments. This movement is propelled by a proliferation of “paper mills,” journals that churn out low-quality studies and flood the literature with unfounded findings. These papers are later cited as “evidence” by advocates of the cures movement, who rely on pseudo-scientific studies to legitimise their harmful beliefs and practices.
In this sphere, autistic people are not perceived as fully human, nor are they granted agency or autonomy. Rather than seeking informed consent from study participants themselves, these studies often depend on parental consent, with parents agreeing to experimental treatments in the hope of “getting their child back.” In this dynamic, the autistic child’s voice is completely disregarded, and treatments are pursued without regard for the child’s wellbeing. The hope, misguided as it may be, is that these interventions will result in a more “normal” child. Such treatments not only expose children to harm but also perpetuate the damaging narrative that autism is something that must be “fixed” at any cost.
The underlying eugenics agenda becomes even clearer when we consider the push to identify genetic markers for autism. Funded heavily by the AutismCARES Act, this research often seeks to detect autism in utero, with ominous parallels to prenatal screenings for Down syndrome. The goal appears to be to provide parents with information on their child’s likelihood of being autistic, not to prepare or offer support but to dissuade them from carrying the pregnancy to term. This chilling objective recalls Aktion T4, a program of the Nazi Reich where lives were systematically devalued and eliminated under the guise of “improvement” for society.
The harmful effect of this culture is compounded as these pseudo-studies become cited, their “findings” coalescing into a body of evidence that works directly against autistic people. These studies create a feedback loop in which autism is continually pathologised and dehumanised, and the goal of eradicating the autistic neurotype (or even people) is falsely justified. Disturbingly, as a taxpaying autistic adult in the United States, I am forced to watch as my own tax contributions fund the exploration of my community’s extinction. The AutismCARES Act, essentially designed without autistic voices or input, prioritises genetic research over support, allocating billions of dollars to studies that ultimately serve to remove autistic people from society rather than supporting us. This is a deep betrayal of our humanity, as funds are spent not on enriching autistic lives but on validating the belief that society would be better off without us.
Final thoughts …
In reimagining autism research, we must shift decisively from a treatment-focused paradigm to one that genuinely prioritises the quality of life for autistic people. Current research too often targets “fixing” autistic traits, rather than addressing the real-world needs of autistic individuals navigating a world not built for them. To effect real change, stakeholders must fund studies that provide practical support in areas like education, employment, sensory accommodations, and mental health services—initiatives that help autistic people lead fulfilling lives on their own terms.
This shift calls for a commitment to respect and support autistic individuals as they are, recognising autism as a valid and valuable neurotype rather than a problem to be solved. With an inclusive and empowering research agenda, autism research can finally foster a future where acceptance and meaningful support are the norm. This vision empowers autistic individuals to thrive without the damaging pressure to conform, allowing them to embrace and celebrate their unique identities.