THE ILLUSION OF INCLUSION: WHY EXPANDING AUTISM LEFT THE MOST VULNERABLE BEHIND
THE ILLUSION OF INCLUSION: WHY EXPANDING AUTISM LEFT THE MOST VULNERABLE BEHIND
ALMAZ SHARMAN, professor of medicine
Over the past twenty years, the world has learned to say the word "autism" out loud. But as the diagnosis grew wider, a sharper question emerged: were the people who needed help most the very first ones the system pushed aside?
How Our Understanding of Autism Has Changed
Autism is being talked about in a different way now than it was ten, fifteen, or twenty years ago. The diagnosis is more visible, more common in public conversation, harder to miss. More families encounter it directly. More schools, doctors, charities, parent groups, and media organizations speak about it openly.
The longer I look at this subject, the clearer one thing becomes: the story is not only that autism appears to be more common. It is also that the meaning of autism has widened over time.
Whenever the rise in diagnoses comes up, the same explanations tend to surface. People point to environmental pressures, air pollution, older parents, or the complex interaction between genes and outside influences. Those factors may well matter. But the more closely one examines the history of autism, the harder it is to ignore a larger truth: these explanations account for only part of the change.
One of the biggest reasons for the sharp rise in numbers lies somewhere else entirely. It has to do with how society, medicine, and support systems decide what qualifies as autism. And for decades, that definition has been expanding.
That does not automatically mean there has been a clear and dramatic surge in the number of autistic people in any simple biological sense. Even if some real increase exists, another fact may be more important: today’s broader definition includes many children and adults who would not have been counted before. And as that definition has widened, so has the strain around it.
The question is becoming harder to avoid. Has the umbrella grown too broad? Have its edges become too indistinct? Has the fight for recognition gradually turned into a fight over limited resources?
More and more, it seems that this now very large community contains people whose needs are profoundly different from one another. And if those needs are different, the response cannot be one-size-fits-all either.
When ignorance gave birth to the harshest labels
Looking back at the early history of autism, what stands out most is not only how little was understood, but how profoundly different the perspective on such children once was.
In earlier years, many people encountered peers whose behaviors would today clearly fall within the autism spectrum, though they were not recognized as such at the time. Others were given diagnoses that reflected the limits of medical knowledge then—labels like childhood schizophrenia—and were often placed in psychiatric institutions. These children were seen as almost completely closed off from the world: they avoided eye contact, did not speak, echoed words, rocked back and forth, reacted painfully to changes, and displayed movements that adults could not interpret. In an environment shaped by uncertainty, ignorance often gave rise to the harshest and most damaging labels.
This lack of understanding was not abstract—it was reflected directly in medical training and clinical practice. During my years in medical school, I remember a psychiatry lecture where Professor Saltzman demonstrated to us children who frequently ran away from home and spent entire days riding shuttle buses. Many of these children had severe developmental disorders, yet their behavior was interpreted through frameworks that now sound deeply outdated. When adults could not explain why a child became anxious over a moved object, avoided eye contact, or seemed to follow an internal logic of their own, such behavior was often classified as psychosis or childhood schizophrenia—conditions perceived as severe, frightening, and largely untreatable.
Behind these interpretations was, above all, a sense of helplessness. When faced with behavior they could not understand, adults tended to label it in the most alarming terms. The unfamiliar was not just misunderstood—it was feared.
For families, the consequences were often devastating. They were told things that today sound almost unthinkable: that help was impossible, that nothing could be done, that it was not worth trying. In many cases, they were advised to place the child in an institution and move on with their lives.
Today, such statements read like a harsh verdict on an entire era—one in which psychiatric institutions took precedence over family life, and isolation was more common than support. Children were removed from society, placed into closed systems, as though their very presence was something inconvenient or difficult for the world to accommodate.
The contrast with today is striking—not only in how autism is understood, but in how society has begun to reconsider its responsibility toward those it once could not comprehend.
From closed institutions to the idea of a spectrum
Over time, this rigid and often bleak logic began to shift. A different understanding slowly emerged: children once considered unreachable could, in fact, be supported. The focus moved from isolation to intervention—not only adapting the world around them, but also equipping them with tools for communication, learning, and everyday life. It marked a turning point, when the conversation about autism began to move away from abandonment and toward practical help.
A major milestone came when autism was formally included in international diagnostic classifications. Yet even then, the definition remained narrow. Autism was primarily associated with severe impairments: little or no response to others, significant speech difficulties, unusual reactions to the environment, and symptoms appearing early in life. It was still regarded as a rare condition.
But reality quickly proved more complex. Clinicians and educators began to notice individuals who did not fit this rigid description. There were children who spoke, but in atypical ways. Those without intellectual disability, yet struggling deeply with social communication. Those who did not meet the traditional criteria, but clearly needed understanding and support.
This raised a fundamental question: where exactly are the boundaries of autism? How should it be defined when its manifestations vary so widely, yet share underlying features?
Out of this uncertainty, a new concept gradually took hold—the idea of a spectrum. Instead of a single, fixed category, autism came to be understood as a continuum: a broad range of conditions that can present in very different ways. This shift was crucial. Autism was no longer seen as a rare, uniform disorder, but as something far more nuanced and diverse.
Asperger syndrome and the blurring of boundaries
Another major shift came when diagnostic criteria were further relaxed and a new category appeared alongside autism: Asperger syndrome. It was intended to capture those cases that did not fit the earlier, stricter definitions. At first, this seemed like a step toward greater precision and fairness—a way to recognize people who had previously been overlooked. But in practice, it had a different effect. The boundaries did not become clearer. They became more fluid.
Within this evolving system, it became increasingly apparent that the same child could receive different diagnoses depending less on their actual characteristics and more on which specialist conducted the assessment. In one clinic, the label might be autism; in another, Asperger syndrome. Over time, diagnoses could shift, be reconsidered, or replaced altogether. From a scientific perspective, this raised concerns about consistency and reliability.
But beyond the clinical debate lay something far more consequential. A diagnosis is never just a medical term.
In real life, it functions as a gateway. It determines access to healthcare, specialized education, therapy, rehabilitation, and social support. It shapes how institutions respond—and whether they respond at all. At the same time, it becomes part of how individuals and families understand themselves, giving language to experiences that might otherwise feel confusing or isolating.
This is why disagreements over diagnosis are never purely technical. They are inseparable from questions of identity, access, and everyday reality.
The ASD diagnosis: how mild and severe forms ended up under one roof
In recent years, autism has become more than just a professional topic—it has turned into a lens through which broader changes in medicine itself can be observed. At major international research forums, such as the annual congresses of the International Society for Autism Research, one impression stands out consistently: the field is evolving at remarkable speed, sometimes faster than everyday clinical practice can keep up.
One decision, made just over a decade ago, marked a turning point.
In 2013, the medical community fundamentally reshaped how autism is diagnosed. Previously separate categories were объединены under a single term: autism spectrum disorder, or ASD. What had once been distinct diagnoses—each with its own criteria and boundaries—were brought together into one overarching framework.
The consequences of that shift were far-reaching. Children with the most severe developmental challenges and those who would previously have received a diagnosis of Asperger syndrome were now grouped under the same label. The Asperger category itself disappeared, and the diagnostic “umbrella” of autism expanded further, encompassing a wider and more diverse group of people than ever before.
At the same time, another important idea was gaining ground—the concept of neurodiversity. Gradually, a new perspective began to take hold: autism was not only a condition to be treated, but also a different way of experiencing and interpreting the world.
Within this framework, autism came to be understood more clearly as a continuum. At one end are individuals who require constant support in the most basic aspects of daily life. At the other are those who can study, work, form relationships, and live independently, while still having distinct patterns of thinking, communication, sensory sensitivity, and perception.
This shift in understanding also reshaped how society views traits associated with autism. Characteristics once seen purely as deficits began to be reconsidered as differences—and in some cases, even as strengths. The ability to focus deeply, think unconventionally, communicate directly, maintain consistency, and notice fine details started to be viewed in a new light. Representation in popular culture played a role as well, bringing autism into the open and moving it beyond whispered conversations.
For many, this has been one of the most important changes of recent decades. The stigma surrounding autism has begun to weaken. For families, a diagnosis is no longer solely a source of fear or shame; it can also provide recognition, explanation, and a pathway to support.
These changes are particularly visible in places where silence once dominated the conversation. Communities are beginning to form, initiatives are emerging, and public dialogue is becoming more open. In some countries the shift is striking: where parents once faced isolation, networks of support are now gradually taking shape.
Taken together, these developments illustrate a broader transformation. Autism is no longer confined to narrow clinical definitions or hidden from view. It has become part of a wider conversation—one that continues to evolve, reshaping not only how the condition is understood, but how society responds to it.
The illusion of equality: why schools push out children with severe ASD
The expansion of the autism spectrum has often been described as a victory—and in many ways, it is. A broader definition has opened the door to recognition, services, and support for countless families who would once have been overlooked. But alongside these gains, a more complicated reality has begun to emerge.
When a single diagnosis comes to include a very wide range of people, it inevitably brings together individuals with profoundly different needs. In theory, this diversity is meant to be embraced. In practice, especially where resources are limited, those differences can create tension rather than unity.
Nowhere is this more visible than in schools.
Increasingly, attention is turning to families raising children with more severe forms of autism. These are children who require continuous support—structured environments, individualized assistance, safety measures, and constant supervision throughout the day. Their needs are not occasional or situational; they are ongoing and intensive.
At the same time, as diagnoses of milder forms of autism have risen, more students are entering the system seeking support. Services that were once designed primarily for those with the most significant challenges are now stretched across a much broader population. As a result, access to meaningful assistance becomes harder to secure.
For some families, this creates a painful paradox. Their child may have a diagnosis that clearly qualifies them for support, yet in practice they are seen as “too complex” for the very programs meant to help them. Schools, already under strain, struggle to manage behaviors such as elopement, sensory overload, aggression, or difficulty adhering to safety rules. What is needed is not symbolic inclusion, but sustained, resource-intensive care—something many institutions are not equipped to provide.
The outcome can be stark. Children are asked to leave, not because they do not belong, but because the system cannot accommodate them. Families are left navigating a reality in which the diagnosis is recognized, yet the infrastructure to support its most demanding forms remains insufficient.
There is a striking irony in this. For years, efforts were focused on reducing stigma, integrating children with autism into mainstream education, and affirming their rights and dignity. In many ways, those efforts succeeded. Autism became visible, acknowledged, and discussed openly.
But at the same time, this broader inclusion has led to increased competition for limited resources. And in that competition, the outcome is not always equitable. In some cases, those with the greatest needs—those who require the most support—are the first to be left behind.
“Profound autism”: why clinicians are proposing a distinct category of support
The tension becomes most visible in conversations about those with the most severe forms of autism. There is a reality that is often left unspoken: some individuals will never be able to live independently. Nor can they rely indefinitely on parental care—because parents grow older, and eventually, they are no longer there.
This is where many of the current conflicts begin to take shape. Within a single diagnosis, lives of radically different character coexist. For some, autism means navigating social differences in an otherwise independent life. For others, it means a lifelong need for constant support, supervision, and care.
Against this backdrop, it is not surprising that clinicians and researchers have increasingly begun to discuss the idea of выделения a separate category—often referred to as “profound autism.” The term is used to describe individuals with minimal or no speech, severe intellectual impairments, and a need for round-the-clock assistance.
At its core, this proposal is less about redefining autism and more about restoring visibility. As the spectrum has broadened, there is growing concern that those with the most intensive needs have become harder to see within it. The idea of “profound autism” is, in part, an attempt to name that reality—to acknowledge that some individuals require a level of support that cannot be adequately addressed within a generalized framework.
This perspective was reflected in the conclusions of an international commission of experts convened by The Lancet, which presented its findings at a recent meeting of the International Society for Autism Research in Seattle. Their work highlights the growing recognition that the current diagnostic umbrella may be too broad to capture the full range of needs in a meaningful way.
At the same time, the concept remains far from settled. “Profound autism” is not a formal, universally recognized diagnosis. It is a term that is gaining traction in clinical and public discourse, rather than a category embedded in official classification systems.
The hope behind it is clear: if a group with particularly severe needs can be more precisely defined, it may become easier to direct resources, services, and long-term support where they are most urgently required. For many families, this is not an abstract debate but a practical question of access to care.
Yet a new label, on its own, does not create new systems or expand existing ones. It can draw attention to a problem, but it cannot solve it. The challenge remains the same: how to build a structure of support that is capable of meeting the full diversity of needs within the autism spectrum—especially for those who need it most.
Support system: the search for balance between recognition and real help
This is where the conversation begins to stall. The question returns again and again: was it a mistake to expand the diagnosis so broadly?
In many ways, the answer is no. Greater awareness, wider acceptance, and the gradual dismantling of stigma were essential steps forward. They changed lives, opened doors, and allowed millions of people to be seen and understood in ways that were not possible before.
And yet, the outcome has been more complicated than many expected. Bringing such a wide range of experiences under a single diagnostic umbrella has not fully delivered the clarity or fairness that was hoped for. Instead, the system has grown more intricate—and so have the human stories within it.
At the center of this complexity lies a fundamental difficulty: there is no linear solution. The autism spectrum cannot be neatly divided into a small number of stable categories without oversimplifying reality. Its variability resists clean boundaries.
But the alternative—keeping everyone within a single, shared category—creates its own problems. When differences in need are too easily blurred, the system struggles to respond appropriately. What unites people conceptually can obscure what distinguishes them in practice.
There is also a deeper concern shaping the debate. If the diagnosis begins to fragment into subgroups, there is a risk that society may interpret this as a hierarchy—suggesting that there is a “real” autism and a “less real” one. Such a perception could have serious consequences. It might undermine recognition for those with milder forms, calling into question their need for support and their place within the community.
This fear is not abstract. It reflects a very real tension between two goals that are both important and, at times, difficult to reconcile: preserving solidarity while acknowledging difference.
And so the search continues—for a system that can hold both truths at once: that autism is a spectrum, and that within that spectrum, needs are not equal.
Questions without answers — for now
Perhaps the most honest conclusion, at this moment, is also the simplest: there is no final answer yet.
The idea of выделения a separate category such as “profound autism” may help address some of the tensions that have emerged. It may bring visibility to those whose needs are the most intensive and, in doing so, help redirect attention and resources. But even if such a step is taken, it will not resolve all the underlying questions.
Those questions remain open—and increasingly urgent.
Where, exactly, does the boundary lie between difference and disability? Who has the authority to speak on behalf of such a broad and diverse community? At what point does a diagnosis become a tool that helps—and when might it begin to do harm? And how can a system of support be built that truly includes everyone: both those who need minimal assistance and those who require care every hour of every day?
There are no simple answers to these questions. And perhaps that, in itself, is the most important insight.
The more autism is studied, the clearer it becomes that it cannot be reduced to a single, unified phenomenon. It is not one story, but many—overlapping, diverging, and often difficult to reconcile. And if the reality is complex, then any meaningful response to it must be complex as well.
