The ABA Myth: Unmasking America's Autism 'Therapy' Obsession
How policy, profit, and public perception built an autism industry—whilst silencing the voices of those it claims to serve.
A deep dive into how ABA became the dominant autism intervention in the U.S.—through policy, profit, and perception—and why autistic adults like me are calling for a shift toward support that centres dignity, not compliance.
Introduction
As an autistic adult with a Level 2 diagnosis (my being a gestalt language processor equates to the “problems with functioning language” part of the diagnosis), I’ve navigated a complex landscape of autism support and interventions. At 53, I’ve witnessed the evolution of autism diagnoses, from the grab-bag approach of DSM-4 to the more unified ASD spectrum in DSM-5. As you know by now, my journey has led me to a career as a special education RSP teacher in a Los Angeles public school, where I daily confront the realities of “autism support” in education.
Throughout my experiences, both personal and professional, I’ve been struck by a pervasive belief in the United States: the notion that Applied Behaviour Analysis (ABA) is the go-to ‘therapy’ for autism. This widespread perception raises a crucial question: Why does the majority of the US think ABA is an ‘autism therapy?’
This question isn’t merely academic; it’s deeply personal and profoundly important for the autistic community. As we delve into this issue in today’s article, we’ll explore the intricate web of policy, funding, market forces, and public perception that has elevated ABA to its current status. We’ll also examine how this focus on behavioural interventions, often designed for children with very high support needs, impacts autistic adults like myself, who require different forms of support and understanding.
The origins of ABA as an ‘autism intervention’
ABA traces its roots to the work of psychologist B.F. Skinner in the 1930s, who developed the theory of operant conditioning. However, it wasn't until the 1960s that ABA was specifically applied to autism by Dr. Ole Ivar Lovaas at UCLA. Lovaas’s approach, initially termed “behaviour modification,” aimed to reduce ‘autistic behaviours’ and increase ‘appropriate behaviours’ through intensive intervention. His 1987 study, claiming significant improvements in children who received 40 hours of ABA weekly, catapulted the therapy into the spotlight.
The promotion of ABA as an autism intervention gained momentum in the 1990s and early 2000s. Professional organisations, such as the Association for Behavior Analysis International, began advocating for its use. Simultaneously, some autism organisations, notably Autism $peaks, heavily promoted ABA as an ‘evidence-based treatment.’ These endorsements carried significant weight, influencing both public perception and policy decisions.
The initial enthusiasm for ABA was fuelled by promises of ‘recovery’ or ‘normalisation’ for autistic children, a narrative that appealed to many parents and professionals unfamiliar with neurodiversity perspectives. Medical professionals, often lacking comprehensive training in autism, began recommending ABA based on these endorsements and the growing body of ‘research’ - much of which was conducted by ABA proponents themselves.
This period also saw the rise of ABA-focused ‘autism centres’ and university programmes, further cementing its status as the primary autism intervention. The therapy’s emphasis on ‘measurable outcomes’ aligned well with educational and healthcare systems’ demands for quantifiable progress, contributing to its rapid adoption. However, this swift rise and widespread acceptance occurred before the emergence of significant critiques from autistic individuals and the neurodiversity movement, setting the stage for the complex debates that continue today.
The role of government policy
The role of government policy in shaping autism interventions in the United States cannot be overstated, with the Autism CARES (Collaboration, Accountability, Research, Education, and Support) Act playing a pivotal role. First passed in 2006 and reauthorised multiple times since, this legislation has profoundly influenced the landscape of autism research, services, and interventions.
The Autism CARES Act allocates substantial federal funding towards autism-related initiatives, ostensibly to improve the lives of autistic individuals and their families. However, the Act’s impact extends far beyond mere financial support. It has effectively steered the direction of autism research and intervention practices, with a significant portion of funds historically directed towards behavioural interventions, particularly ABA.
This funding mechanism creates a self-reinforcing cycle. Research priorities are shaped by the availability of grants, leading to a concentration of studies on ABA and similar behavioural approaches. The resulting research then justifies further funding in these areas, creating a circular system that perpetuates itself. This cycle is further strengthened by what's known as ‘baseline budgeting,’ where spending increases year after year without rigorous accountability, under the assumption that previous year’s allocations form the baseline for future budgets.
The relationship between government regulators and the autism intervention industry (often called the Autism-Industrial Complex) often verges on the incestuous. A revolving door exists where individuals move between roles in government agencies, research institutions, and private ABA providers. This phenomenon, known as regulatory capture, occurs when regulatory agencies advance the commercial interests of dominant industries rather than serving the public interest. In the context of ‘autism interventions,’ this has led to a growing ‘pie’ of federal funding that benefits established players in the ABA industry year after year.
Furthermore, the Act influences professional training programmes and shapes clinical guidelines. Many healthcare providers receive training heavily focused on behavioural interventions, funded indirectly through government grants. These professionals then go on to recommend ABA, perpetuating its dominance in autism care.
The impact of this government-driven approach extends to insurance mandates as well. Many states have passed laws requiring coverage for ‘evidence-based’ autism treatments, with ABA often explicitly named due to its research base - a base largely built on government-funded studies.
This intertwining of government policy, funding, and industry interests has created a system that is resistant to change and often dismissive of alternative approaches. Despite growing criticism from autistic self-advocates and increasing recognition of neurodiversity, the established funding and policy structures continue to prioritise behavioural interventions. This situation underscores the need for critical examination of how government policies shape autism support, and calls for greater inclusion of autistic voices in decision-making processes.
The creation of a market
The creation of a market for ABA as an ‘autism therapy’ serves as a stark example of how industry swiftly follows government funding. As federal and state funds became available for ABA research and implementation through initiatives like the Autism CARES Act, a burgeoning industry emerged to capitalise on this new financial stream.
The proliferation of ABA providers and services has been nothing short of remarkable. What began as a niche field has exploded into a multi-billion dollar industry. Universities started offering degrees in ABA, certification boards were established, and countless private practices and clinics specialising in ‘ABA therapy for autism’ sprouted across the country. This growth was not merely organic; it was actively cultivated by the promise of steady government funding and insurance reimbursements.
As the market expanded, so did the influence of trade organisations representing ABA providers. These organisations, such as the Behavior Analyst Certification Board (BACB) and the Association for Behavior Analysis International (ABAI), have come to wield significant power over their members and the broader discourse surrounding autism interventions.
Perhaps most troublingly, these organisations often enforce an almost lock-step adherence to the narrative of ABA as the premier ‘autism therapy.’ Members are frequently discouraged from criticising ABA or exploring alternative approaches. This orthodoxy is maintained through various means, including control over continuing education requirements, ethical guidelines that prioritise behavioural principles, and the threat of professional ostracism for those who deviate from the accepted narrative.
This rigid stance serves to protect the market these organisations represent. By presenting a united front and suppressing internal criticism, they maintain ABA’s dominant position in ‘autism care,’ ensuring continued funding and growth. However, this approach also stifles innovation and dismisses the voices of autistic individuals who may have valid critiques of ABA.
The creation of this market has had far-reaching consequences. It has shaped public perception of autism and its ‘treatment,’ influenced educational and healthcare policies, and even affected how autism is researched and understood. The financial incentives have become so entrenched that challenging the primacy of ABA is often seen as threatening not just a therapy, but an entire industry.
This situation highlights the potential dangers of allowing market forces to dictate approaches to complex human conditions like autism. It underscores the need for diverse voices - particularly those of autistic individuals - in shaping autism support strategies, and calls for a more nuanced, person-centred approach that isn’t beholden to industry interests.
Marketing and public perception
The marketing of ABA as an “evidence-based” autism therapy has been a relentless and pervasive campaign, shaping public perception and professional recommendations alike. This marketing effort extends far beyond traditional advertising, permeating academic literature, professional conferences, and even diagnostic processes.
ABA providers and organisations have consistently promoted their approach as the ‘gold standard’ in ‘autism intervention,’ leveraging the term ‘evidence-based’ to lend scientific credibility to their claims. This narrative has been so effective that it's often accepted without question, even in situations where it may not be appropriate or beneficial.
My personal experience of receiving a packet of “information” about “support options” that prominently featured ABA, despite the absence of behavioural components in my experience of my autistic system, is a telling example of this phenomenon. It highlights how deeply ingrained the ABA-first approach has become, even for adult diagnoses where behavioural interventions may be entirely unsuitable.
This marketing has significantly influenced medical recommendations. Many healthcare professionals, often lacking comprehensive training in the diverse needs of autistic individuals, default to recommending ABA based on its ubiquitous presence in autism literature and guidelines. This creates a self-fulfilling prophecy: the more ABA is recommended, the more it’s seen as the standard of care, leading to even more recommendations.
The impact on insurance coverage has been equally profound. In many regions, ABA is one of the few autism-related ‘therapies’ consistently covered by health insurance. This coverage decision is often justified by citing the therapy’s ‘evidence-based’ status, creating a circular system where coverage leads to more use, which is then used to justify continued coverage.
Moreover, the marketing of ABA has shaped societal expectations of autism support. Many parents, educators, and even some autistic individuals have internalised the idea that ABA is a necessary part of autism care. This perception can lead to pressure to pursue ABA, even when other approaches might be more beneficial or aligned with an individual’s needs and preferences.
This aggressive marketing and its widespread acceptance underscore the need for a more nuanced, individualised approach to autism support. It calls for greater recognition of the diversity within the autism spectrum and the validity of multiple approaches to support and accommodation, rather than a one-size-fits-all solution.
The self-reinforcing cycle
The self-reinforcing cycle of ABA’s dominance in ‘autism intervention’ is a textbook example of how research funding can create a facade of overwhelming evidence. This cycle begins with substantial government and private funding directed towards ABA research, often to the exclusion of alternative approaches.
This funding fuels what can be described as ‘evidence mills’ - research institutions and programmes dedicated to producing studies that support ABA’s efficacy. However, the quality of this research is often questionable. Many studies feature small sample sizes, lack proper control groups, or fail to account for confounding variables. Despite these limitations, they are frequently cited as ‘proof’ of ABA’s effectiveness.
Moreover, the US has effectively rewritten the definition of ‘evidence-based’ to be so broad and vague that it can encompass almost any intervention with a modicum of supportive research. This dilution of standards allows ABA proponents to claim a strong evidence base, even when the research lacks rigour or reproducibility.
This manufactured ‘evidence’ is then used to justify further funding and expansion of ABA services. Grant applications cite these studies, insurance companies use them to justify coverage, and policymakers reference them when allocating resources. The cycle continues, with each turn further entrenching ABA’s position and making it increasingly difficult for alternative approaches to gain recognition or funding.
This self-reinforcing system not only skews the research landscape but also potentially harms autistic individuals by limiting the exploration of diverse support strategies that might better serve the heterogeneous autism community.
The impact on autistic adults
The impact of the ABA-centric approach on autistic adults is profound and often overlooked. Despite the fact that autism is a lifelong way of being, the overwhelming focus of interventions and support remains fixated on ‘fixing’ children, leaving autistic adults with limited options that often fail to address our complex and diverse needs.
Many autistic adults find themselves in a support desert, where the primary interventions available are essentially repackaged versions of ‘therapies’ designed for children. This infantilising approach not only fails to respect the dignity and autonomy of autistic adults but also overlooks the unique challenges we face in navigating a neurotypical world.
The persistent focus on behavioural aspects, a hallmark of ABA, often comes at the expense of holistic support. This narrow view fails to acknowledge that autism is not merely a set of behaviours to be modified, but a fundamental aspect of an individual's neurology that affects every facet of their experience. Autistic adults require support that goes beyond behaviour modification, encompassing areas such as sensory processing, executive functioning, social navigation, and mental health.
The recent Buckland Review in the UK provides a stark contrast to this behavioural focus, highlighting what autistic adults truly need. The review emphasised the critical importance of supportive housing and employment opportunities, as well as the fundamental right to a life of dignity. These findings underscore the gap between current autism support paradigms and the actual needs of autistic adults.
Many autistic adults require assistance in areas that are rarely addressed by traditional autism interventions. These might include support in navigating complex social situations in the workplace, advocacy for accommodations in higher education, or help in managing the executive functioning demands of independent living. Additionally, many autistic adults struggle with co-occurring mental health conditions that require specialised support beyond what is typically offered in autism-focused services.
The lack of appropriate support for autistic adults can lead to severe consequences, including unemployment, social isolation, mental health crises, and an overall decreased quality of life. This situation is exacerbated by a societal perception, partly fueled by the child-centric nature of most autism interventions, that autism is primarily a childhood condition.
Addressing these issues requires a fundamental shift in how we approach autism support. We need to move beyond the behavioural focus and child-centric models, towards a lifespan approach that recognises the evolving needs of autistic individuals as they age. This approach should prioritise quality of life, independence, and community integration, rather than merely focusing on behaviour modification or ‘normalisation.’
The monopoly capitalist system’s influence
The influence of the monopoly capitalist system on autism support is a stark example of how profit motives can warp the very concept of ‘help’ into something that may ultimately harm those it purports to assist. In the United States, where almost every aspect of life has been commodified, autistic individuals often find themselves struggling to ‘justify their worth’ in a system that values productivity above all else.
This capitalist framework has led to the development of a lucrative autism ‘industry,’ where interventions and supports are often designed and marketed based on their potential for profit rather than their actual benefit to autistic individuals. ABA, with its easily quantifiable outcomes and potential for long-term client retention, fits neatly into this profit-driven model.
Consequently, alternative approaches and autistic perspectives are frequently overlooked or dismissed. Therapies and supports that may be more beneficial but less profitable receive little attention or funding. More importantly, the voices of autistic individuals themselves are often drowned out by the cacophony of marketing and the pursuit of profit.
This system tends to view autistic individuals primarily as potential consumers of services or as projects to be ‘fixed,’ rather than as full human beings deserving of respect and self-determination. It overlooks the potential contributions autistic individuals can make to society when properly supported and accommodated.
It’s crucial to recognise that capitalism, particularly in its current monopolistic form, is a relatively recent development in human history. There are indeed other ways to organise a society and economy that could benefit all, including neurodivergent individuals. Models that prioritise community wellbeing, diversity, and quality of life over pure profit could provide a more supportive environment for autistic individuals.
Reimagining autism support outside the constraints of monopoly capitalism could lead to more holistic, person-centred approaches that truly enhance the lives of autistic individuals rather than merely treating them as sources of revenue.
The need for change
The need for change in autism support is urgent and multifaceted. While it’s crucial to acknowledge that there are autistic individuals of all ages with high support needs, including those with Level 3 diagnoses who may exhibit dangerous behaviours like PICA, these cases represent a small minority. The majority of autistic individuals have a Level 1 diagnosis*, for whom ABA is often not only pointless but potentially harmful.
A critical examination of established practices is long overdue. This scrutiny must extend beyond mere efficacy to consider the ethical implications and long-term impacts of interventions like ABA. We must question whether our current approaches truly serve the diverse needs of the autistic community or merely reinforce societal norms at the expense of autistic wellbeing.
Central to this change must be the centring of autistic voices in developing and implementing support approaches. For too long, ‘autism interventions’ have been designed and administered by non-autistic professionals, often with limited input from autistic individuals themselves. This needs to shift dramatically, with autistic people leading the conversation about their own needs and the most effective ways to meet them.
Final thoughts …
Wapping things up, the autism community urgently needs a more nuanced, person-centred approach to support that moves beyond the one-size-fits-all model exemplified by ABA. This approach must recognise the vast diversity within the autism spectrum and tailor support to individual needs, strengths, and preferences.
Challenging the systemic issues in autism care is paramount. This includes confronting the profit-driven motivations behind many current interventions and the exclusion of autistic voices from decision-making processes. We must also address the flood of BCBAs on social media platforms like TikTok and LinkedIn who often refuse to engage in reasoned dialogue about the inappropriateness of ABA for many autistic individuals.
The path forward requires a fundamental shift in how we conceptualise autism and support. It demands that we listen to autistic voices, respect neurodiversity, and prioritise quality of life over conformity to neurotypical norms. Only by challenging the status quo and embracing a more inclusive, ethical approach can we hope to create a world where all autistic individuals can thrive on their own terms.
*Update: After a series of interesting exchanges on LinkedIn about this statement, “The majority of autistic individuals have a Level 1 diagnosis…,” I’ve decided to add a few more comments and some links. It seems that many in the ABA camp were looking for a single study or source for this claim. That seems to be their thing. My attempts to demonstrate where that statement comes from were met with replies like, and I’m paraphrasing here, “still waiting for that source.”
First, I noted in one of my replies that none of the available data captures the self-diagnosed or the US students who are not diagnosed but given a AUT eligibility for special treatment education services - the vast majority of which fit Level 1 criteria.
Second, I listed several articles and papers that I used in the creation of the article noting that I had summarised from those sources. I also listed my book as a source, “No Place for Autism?,” with it’s roughly 30 pages of references.
Third, this is what authors do. They synthesize and summarise, putting the mundane into readable format. To me, a SpEd teacher who has been autistic their whole life and has supported autistic people and their families in my area for quite some time, this wasn’t a novel or shocking claim - that the majority of the autistic population have a Level 1 diagnosis. If I could edit this for clarity, I would remove the “have” and change it to “have or qualify for.”
But to get to that claim, one has to do a bit of digging and a bit of maths. So, here’s a few of the more important source papers:
Christensen, D.L., 2019. Prevalence and characteristics of autism spectrum disorder among children aged 4 years—early autism and developmental disabilities monitoring network, seven sites, United States, 2010, 2012, and 2014. MMWR. Surveillance Summaries, 68. This study gives some good baseline information.
Bertrand, J., Mars, A., Boyle, C., Bove, F., Yeargin-Allsopp, M. and Decoufle, P., 2001. Prevalence of autism in a United States population: the Brick Township, New Jersey, investigation. Pediatrics, 108(5), pp.1155-1161. This is an older study, but you can use it to see how the prevalence data changes from DSM-IV to DSM-V, as well as some of the methodology.
Tonnsen, B.L., Boan, A.D., Bradley, C.C., Charles, J., Cohen, A. and Carpenter, L.A., 2016. Prevalence of autism spectrum disorders among children with intellectual disability. American journal on intellectual and developmental disabilities, 121(6), pp.487-500. The key to the search is not to look for Levels as such, but for the co-occurrance of the ‘conditions’ and their ‘support needs’ that make up the levels. Thus, one needs to look for profiles among children with comorbid ASD and ID.
Kim, Y.S., Leventhal, B.L., Koh, Y.J., Fombonne, E., Laska, E., Lim, E.C., Cheon, K.A., Kim, S.J., Kim, Y.K., Lee, H. and Song, D.H., 2011. Prevalence of autism spectrum disorders in a total population sample. American Journal of Psychiatry, 168(9), pp.904-912.
Williams, J.G., Higgins, J.P. and Brayne, C.E., 2006. Systematic review of prevalence studies of autism spectrum disorders. Archives of disease in childhood, 91(1), pp.8-15. Here, the takeaway is the challenge of comparing prevalence across studies or estimating subgroups (like Level 3 autism) due to heterogeneity in methods and definitions.
Brugha, T.S., McManus, S., Smith, J., Scott, F.J., Meltzer, H., Purdon, S., Berney, T., Tantam, D., Robinson, J., Radley, J. and Bankart, J., 2012. Validating two survey methods for identifying cases of autism spectrum disorder among adults in the community. Psychological medicine, 42(3), pp.647-656. Similar to Kim et al., but conducted in England.
Zhou, H., Xu, X., Yan, W., Zou, X., Wu, L., Luo, X., Li, T., Huang, Y., Guan, H., Chen, X. and Mao, M., 2020. Prevalence of autism spectrum disorder in China: a nationwide multi-center population-based study among children aged 6 to 12 years. Neuroscience Bulletin, 36, pp.961-971. The first of it’s kind in China.
Based on these studies, my book, and others not listed because of the max word count here, we can estimate the co-occurrence of autism spectrum disorders (ASD) and intellectual disability (ID), and then use that to estimate the population with ASD but without ID. Here’s the approach:
The studies found an average overall ASD prevalence of ~2.64% in the total population.
The studies provide data on intellectual functioning for both the high-probability group and the general population sample: High-probability group (~0.75% of total population):
59% had intellectual disability
General population sample (1.89% of total population):
16% had intellectual disability
Using the very specific numbers in Kim et al., which track with more generically listed Brugha and Zhou, we can calculate a weighted average of ID occurrence in the ASD population: (0.75 * 0.59) + (1.89 * 0.16) = 0.4425 + 0.3024 = 0.7449 0.7449 / 2.64 = 0.2822 or about 28.22%
This means approximately 28% of autistic individuals in this population also have ID.
Therefore, we can estimate that approximately 72% of autistic individuals do not have ID.
So, with that, this article becomes that single source that some where looking for. Feel free to fact check the articles, gather the numbers, and run them for yourself. I am confident in the reproducibility of this methodology and thus my results.