An Autistic Affected person Rebellion Is Taking place Now — THINKING PERSON’S GUIDE TO AUTISM
I was 30 when my son’s Yeshiva principal called and asked to speak to my husband. When I pressed for details, I was told my 8-year-old was “awkward” and struggling, and that we should pursue testing. An evaluator within our Chassidic community in Brooklyn recommended an autism assessment. Soon after, several of my children received diagnoses.
As a young housewife in an arranged marriage, I followed the guidance available to me. Our Yiddish-speaking community discouraged outside services, so we relied on local providers. My trust began to fracture when a therapist told my nonspeaking three-year-old that her stimming body movements were not “tznius” (modest) and were upsetting to God. That moment forced me to question the authority behind the care being delivered.
I soon learned that this therapist had minimal formal training, barely out of high school, yet already credentialed through a rapid-track system for a Master’s degree, embedded within the community. What had been presented as professional expertise began to look like a system built for scale rather than competence. That realization deepened as I encountered practices that prioritized compliance over care. The breaking point came in 2008 when I was instructed to withhold food and drink from my toddler until she produced specific verbal responses. I ended services that same day.
What began as a search for help became a confrontation with harm. Soon after, I received my own autism diagnosis. By then, the damage had already been done. The practices imposed on my child, justified as therapy and funded through Medicaid, had lasting consequences for our family.
Over the following decade, I pursued a higher education than offered in my community. In college, I achieved an undergraduate degree in music therapy, and embarked on the rigorous study of scientific research methods pertaining to psychology and transformative leadership. My goal was not only to understand what had happened, but to help build something different, a framework grounded in ethics, evidence, and respect for autistic people. That work led to the founding of the Federal #BanABA Initiative. What began as a private crisis is now part of something larger, a shift in which autistic individuals are no longer passive recipients of care, but active participants in challenging and reshaping the systems built around them.
From Voice to Power
Over the past three decades, autism moved from the margins of medicine into the center of public policy and large-scale service systems. As diagnoses increased and behavioral interventions like ABA became embedded in Medicaid and insurance frameworks, a powerful system took shape: one defined largely by clinicians, researchers, and institutions. Public policy only acknowledged Autistic people as patients of intervention, and regarded them as a silent minority group who cannot inform their own care. The current uprising emerges from that imbalance. It is not a sudden rupture, but a response to a system built without the people it claims to serve.
The first shift began quietly, through Autistic-run communities in the early internet era. At the start of the 1990s, individuals connected across distance, compared experiences, and identified patterns long dismissed as isolated. What began as peer exchange became collective knowledge, challenging deficit-based narratives and asserting lived experience as a form of expertise. By 2010, services expanded rapidly in the business sector, and by 2014, Medicaid authorized the reimbursement of Applied Behavior Analysis (ABA) in most US States. ABA was no longer just a practice; it was an industry. With that national visibility came public critique, not only of the methods, but of the assumptions embedded in terms like “therapy,” which carry implications about normalization, benefit, and medical necessity.
Patient Uprisings Historically Led to Global Change
Between 1930s-1950s, patients with Hansen’s disease (formerly called ‘leprosy’) were isolated into federal leprosy colonies such as Carville. The patients confronted systems that imposed lifelong quarantine and defined care without consent; reducing stigma and establishing patients as participants in federal policy reform, rather than subjects of containment.
Psychiatric survivors, through the Mad Pride Movement from the 1960s to the present, resisted involuntary commitment and forced treatment, building patient-run networks that challenged institutional authority. They reframed “madness” as identity rather than pathology, and argued that treatment without consent can be harmful. Their efforts strengthened due process protections, advanced deinstitutionalization, and established peer-led care models, shifting the debate toward autonomy, consent, and patient authority in defining treatment.
From the 1960s to 1990s, disability rights activists who were fighting for ramps and elevators to public transportation, reframed disability from a medical problem into a civil rights issue. That shift culminated in the ADA and established requirements for accessibility, accommodations, and non-discrimination across public systems.
During the 1980s and 1990s, HIV/AIDS patients, initially denied timely access to lifesaving treatments amid stigma and moral judgment, organized through the ACT UP protest movement to confront both government and industry. Combining militant protest with technical expertise, they exposed how restrictive clinical trial rules and slow regulatory processes delayed care, forcing reforms that accelerated drug approval, expanded access, and established patients as active participants in biomedical decision-making.
For each marginalized group, federal change occurred when those affected moved from being subjects of policy to pushing those who are governing it, to be responsive and active. These same transformative leadership outcomes have successfully shifted the autism debate.
Collision with System Reality
What is emerging in 2026 is not just a clash of perspectives, but an exposure of how the system actually operates under pressure. As regulators examine billing practices, workforce models, and private investment, a divide has emerged. Industry groups often frame current concerns as isolated failures, fraud, bad actors, or compliance gaps, arguing that the underlying model remains sound. Autistic advocates and aligned researchers counter that the problems are structural, rooted in how services were scaled, funded, and defined.
At the center of that structural problem is a fundamental lack of transparency: Medicaid beneficiaries do not have access to clear, routine billing records for services delivered in their own name. In most parts of the economy, accountability is built into participation. A consumer receives a receipt, a record, and a basis to question what was purchased and delivered. In Medicaid, that basic mechanism is largely absent. The assumption is implicit but consequential: If the patient does not pay, the patient does not need to know. Yet public funds are still transacted in an individual’s name, and without patient-level visibility, there is no real-time verification.
Within this structure, fee-for-service reimbursement further compounds the problem. Payment is tied to volume and hours billed, not necessarily outcomes or patient-defined benefits. Under such conditions, overutilization and uneven quality are not anomalies, they are predictable.
This issue isn’t theoretical. It is now playing out in legislative and regulatory settings, where policymakers must determine whether the issue is episodic or systemic. That distinction matters because if the problem is limited, the response is targeted enforcement. If it is structural, the implications are far broader, requiring reconsideration of how services are defined, reimbursed, and overseen.
At the same time, states are repositioning to limit exposure. Medicaid programs are structured so that providers, organized as corporations or group practices, bear primary responsibility for billing, supervision, and compliance. Liability is concentrating at the organizational level. But this redistribution of risk does not resolve the core design problem. It leaves intact a system where verification occurs after the fact, through audits and enforcement, rather than at the point of care.
A Federal Reckoning: Visibility and Accountability
The system’s flaws are not hidden, they are normalized. Public programs routinely exclude patients from the financial record of their own care, even as services are billed in their name. What would be unthinkable in any other sector—a transaction without a receipt—has become standard practice. The underlying assumption is simple: if patients do not pay, they do not need to know. But that assumption removes accountability at the point where it is most needed.
Patients and families are present for every service. They witness what happens. Yet they are denied access to the records that would allow them to confirm it. A system that bills in a person’s name while withholding the bill does not merely risk abuse, it invites it. Oversight, as currently structured, is largely retrospective. Claims are audited after funds have moved, attempting to reconstruct reality, rather than verify it in real time.
As scrutiny increases, this design flaw is colliding with financial and regulatory reality. Federal funding depends on strict conditions, medical necessity, proper billing, and adequate oversight. When those conditions are not met, funds can be recouped, and liability can extend beyond providers to the states themselves. The question is no longer only whether services are delivered, but whether they meet the standards required to justify federal support.
What emerges is a different model of accountability. The principle is straightforward: no service billed in a person’s name should be invisible to them, and no claim should proceed without the possibility of their review. This is not an expansion of bureaucracy, it is a redistribution of information to the point where it is most accurate. If a claim cannot withstand patient review, it should not be paid.
Turning beneficiaries into auditors does more than reduce fraud. It restores alignment between record and reality. The alternative is a system that continues to rely on delayed detection, expanding enforcement costs while leaving its most effective safeguard unused. The choice is structural: continue funding systems that operate without patient-level transparency—or redesign them so that accountability begins where care actually occurs.
Image by Tung Lam from Pixabay
