The Forgotten Generation

Autism, Aging, and the Practical-Philosophical Responsibility for Our View of the Human Being

Autistic children do not disappear when they become adults. They become adults. They grow older. They have life courses, experiences, defeats, relationships, work, illness, old age, and memories. Yet autism has long been understood primarily as a childhood phenomenon. The field, the welfare services, schools, and public discourse have often directed their gaze toward the child: the child in kindergarten, the child in school, the child who needs assessment, intervention, and accommodation.

But what about the autistic children who grew up before autism had its current language?

Many of them are older citizens today. Some never received a diagnosis. Some received the wrong diagnosis. Some were understood as feeble-minded, retarded, psychotic children, childhood schizophrenics, emotionally disturbed, or socially maladjusted. Some were placed in special classes. Some were sent to institutions. Some lived an entire life with a fundamental experience of being different, without being given a language that could explain that difference without turning it into guilt, defect, or moral failure.

This essay is about this forgotten generation. Not primarily as a clinical problem, but as a practical-philosophical question: What happens to a human being when society lacks adequate concepts for understanding him or her? And what responsibility do professions, schools, and welfare institutions carry when their categories not only describe people, but also shape their lives?

When Concepts Become Destiny

Practical philosophy often begins in concrete life. It asks not only what is true, but what truth does to human lives. It asks not only which concepts we use, but how those concepts work in practice. A diagnostic term is never merely a word. It may open the way to help, but it may also enclose a person within an expectation.

Today we hear the word retarded primarily as an insult. Historically, it was more than that. It was also a diagnostic, educational, and administrative term. It could be used in schools, expert assessments, classroom placements, and adult conversations about the child. Precisely for that reason, the word was so powerful. When a child is called an insult by other children, it hurts. When a child is called a diagnostic word by adults with authority, something more happens. The word becomes a placement. It becomes an explanation. It becomes an expectation.

The child is not only wounded. The child is defined.

This is an old social-philosophical problem. Human beings are not only seen. They are seen as something. They are understood within categories that already exist in culture. When the categories are too narrow, the human being may disappear behind the label. One no longer sees the child, but “the retarded one,” “the difficult one,” “the psychotic one,” “the restless one,” “the maladjusted one.”

Recognition, therefore, is not only about kindness. It is about being understood within a language that does not violate experience. When language fails, community may fail as well.

Autism Before Autism Had Its Own Language

In the 1950s and 1960s, autism did not yet have the place in professional knowledge and education that the term has today. The word autism had indeed been in use for a long time, but historically it was closely connected to the concept of schizophrenia. In Eugen Bleuler’s work, autism was understood as a withdrawal from external reality, associated with schizophrenia. When Leo Kanner in 1943 described what he called “early infantile autism,” a new understanding began to take shape, but the diagnostic and professional separation from psychosis concepts took a long time.

In DSM-II from 1968, autistic, atypical, and withdrawn behavior was still described within the framework of childhood schizophrenia. Only with DSM-III in 1980 was infantile autism established as a separate diagnostic category, distinct from childhood schizophrenia. This means that many children in the postwar period and up through the 1970s were understood within a professional landscape in which autism, childhood psychosis, childhood schizophrenia, mental retardation, withdrawal, and emotional disturbance could easily merge into one another.

This does not mean that all teachers, physicians, psychologists, or parents acted with ill will. Many undoubtedly did their best within the horizon of understanding available to them at the time. But it does mean that the maps were often poor. And when the map is poor, the child can be made into the problem.

A child who reacted strongly to sounds, unrest, gazes, movements, and unpredictability in the classroom could be interpreted as disruptive or undisciplined. A child who withdrew could be interpreted as unreachable. A child who did not cry could be interpreted as emotionally flat. A child who smiled in incomprehensible situations could be interpreted as foolish, naïve, or inappropriate. A child who avoided eye contact could be interpreted as evasive or lacking normal social contact.

Today one might ask different questions: Is the child sensorily overloaded? Does the child have another way of regulating himself or herself? Is the smile a form of protection? Is silence an expression of pain? Is withdrawal a way of surviving? Is there an emotional life here that does not follow the forms of expression adults expect?

The practical-philosophical lesson is simple, but demanding: It is possible to see a child every day without understanding the child. It is possible to observe behavior and still misunderstand the human being.

Bettelheim and the Empty Fortress

Bruno Bettelheim’s The Empty Fortress from 1967 stands as a dark symbol of a particular epoch in the intellectual history of autism. The book became one of the best-known presentations of the psychogenic understanding of autism. Autism was understood as the result of serious early relational disturbances. The child was interpreted as having withdrawn from a world that had become unbearable. The family, and especially the mother, was often drawn into the explanation.

The idea of the “refrigerator mother” had deeply harmful consequences. Mothers could be made responsible for their child’s autism. The child was understood as locked inside an inner fortress. The family was made into the cause. Instead of asking what kind of world the child needed in order to feel safe, the question often became what the parents had done wrong.

Bettelheim must be understood historically, but not ethically excused. He was part of a time when psychoanalytic interpretations held great authority, and when the child’s own world of experience was rarely allowed to speak. The child was interpreted from the outside. The parents were interpreted from the outside. The expert held the power of definition.

Here lies one of the most important lessons for practical philosophy: Whoever interprets another human being exercises power. Interpretation is not merely understanding. Interpretation may also become a form of violation if it confines the other within an explanation in which the other cannot recognize himself or herself.

This is not only history. It is an ever-present ethical challenge in all professions that work with human beings. The question is not only: What do we see? The question is also: What do our concepts do to the person we see?

Løvaas and the Ethics of Normalization

Bettelheim is not the only figure who belongs in this history. Ole Ivar Løvaas also shows how complex the history of autism treatment is. Løvaas was a Norwegian-born psychologist who later became a professor at the University of California, Los Angeles. While Bettelheim interpreted autism through the psychoanalytic language of withdrawal, emotional coldness, and relational injury, Løvaas came from another tradition: behaviorism.

The child was not primarily to be interpreted. The child’s behavior was to be shaped.

Løvaas became one of the most influential figures in the development of intensive behavioral treatment for autistic children. His work laid an important foundation for what later became known as Applied Behavior Analysis, ABA, and Early Intensive Behavioral Intervention, EIBI. In his best-known study from 1987, young autistic children received extensive one-to-one training, often described as up to forty hours per week. The study was later used as a major argument that early and intensive teaching could produce significant learning and developmental gains.

But this history, too, has a dark side. In Løvaas’s early work, unwanted behavior was not only met with positive reinforcement, but also with aversive methods. One early article bore the telling title “Building Social Behavior in Autistic Children by Use of Electric Shock.” In another 1969 study on self-injury in three children who at the time were described as retarded and psychotic, painful electric shocks were used as punishment.

What could then be described as treatment appears today, to many, as deeply violating.

Here lies an important lesson. The field gradually moved from blame to treatment, but not necessarily from control to understanding. The child was no longer always explained as the result of a cold mother, but could still be approached as a project to be corrected, trained, shaped, and normalized. The aim was often for the child to appear less autistic, more adapted, more like other children.

Contemporary behavioral interventions are not identical to Løvaas’s early methods. Much has changed. Many would argue that modern, ethically responsible interventions can help children develop language, self-help skills, safety, and greater independence. But criticism from autistic adults and the neurodiversity movement reminds us of a decisive ethical question: What is the goal of the help?

Is the goal to give the child more possibilities for expressing himself or herself and participating in the world? Or is the goal to make the child hide what makes him or her autistic?

This question belongs in the history of the forgotten generation. Many grew up in a time when the child was interpreted either as ill, damaged, retarded, or wrongly parented — or later as a behavioral project to be normalized. What the child was rarely allowed to be was a human being with a distinctive way of sensing, feeling, learning, and being in the world.

Institutions and the Large Numbers

The forgotten generation includes not only those who passed through ordinary schools with the wrong labels. It also includes children who were removed from their homes and placed in children’s homes, special schools, residential schools, central institutions, or other care systems. Many of these children were understood within the broad and often unclear categories of the time: mental retardation, developmental disabilities, feeble-mindedness, intellectual deficiency, maladjustment, or severe functional disturbance.

The numbers place the theme in a wider light. In the United States, in 1965, more than 91,000 children and young people under the age of twenty-one lived in state institutions for people with mental retardation and related developmental disabilities. In 1967, the total American institutional population in such systems reached its historical peak, at approximately 228,500 people. In Norway, historical sources show that by the end of 1959, 3,059 people were under what was then called the care system for the intellectually disabled, distributed among central institutions, smaller institutions, day homes, and supervised private care. In addition came children’s homes, residential schools, and special schools. NOU 2004:23 estimates that approximately 20,000 individual children lived in Norwegian children’s homes during the period 1945–1980.

This is not autism statistics in the modern sense. That must be emphasized. Most of these children were not understood as autistic. They were counted in other categories. Precisely for that reason, however, the numbers are still relevant. They show the scale of an institutional system that sorted children according to the period’s concepts of deviance, ability, behavior, adaptation, and development.

Behind such numbers are thousands, perhaps hundreds of thousands, of life stories. Some children remained at home. Others were sent away. Some were protected. Others were exposed to violence, neglect, and abuse. Many were never asked what the world looked like from their side.

This is a fundamental practical-philosophical question: Which lives become possible within the institutions we build? And which lives become impossible?

Institutions can protect. They can provide care, structure, and help. But institutions can also hide people. They can turn a child into a case, a placement, a diagnosis, a category. They can make what is not understood appear administratively manageable.

From Stigma to Visibility

Much has happened in sixty years.

Today many children with ASD receive help earlier. Parents receive guidance. Schools have another language for sensory overload, communication, regulation, and accommodation. Mothers are no longer, in the same way, blamed for their child’s difference. In public life, children and young people with functional variations can also become visible in other ways. They may appear as participants, not only as patients; as human beings with courage, humor, vulnerability, and dignity, not only as problems for professionals.

The contrast with the 1960s is striking. Then the child could be hidden away, wrongly placed, misinterpreted, or made into a problem. Today the child may, at best, be met with support, rights, visibility, and community.

But this positive development must not make us historically forgetful. For the children who grew up before this shift took place are old now. Some live with memories of having been misunderstood, placed outside, corrected, normalized, or overlooked. Many have lived without a diagnosis, or with the wrong diagnosis. Some have only late in life received a language for something that had been there all along.

Autism research has long been dominated by children and young adults. Research on older autistic people is increasing, but it is still described as a historically neglected and emerging field. We still know too little about older autistic people’s experiences, life courses, health, aging, relationships, loneliness, masking, and encounters with services.

But research lacks not only numbers. It also lacks life stories. It lacks language for what it does to a human being to live an entire life with the wrong concepts hanging over them. It lacks knowledge about shame, masking, sensory exhaustion, misplacement, late diagnosis, and the strange relief that may come when, late in life, one finally receives a word that does not merely judge, but explains.

Receiving a Language Late in Life

For some people, the autism diagnosis is not a beginning, but a retrospective interpretation. It casts light backward. It does not explain everything, but it shifts blame. It may change the story of a life.

The child was not stupid. The child was not empty. The child was not cold. The child was not without feelings. The child was not morally failed.

The child was different.

And difference was not understood.

Here lies an important distinction between diagnosis as stigma and diagnosis as liberating language. A diagnosis can narrow a person if it is used as a final explanation. But it can also give dignity if it opens a more truthful understanding. It can make it possible to see that what was once called stubbornness, oddness, distance, passivity, restlessness, or withdrawal may also have been attempts at regulation, protection, survival, concentration, or another way of being in the world.

Practical philosophy is about judgment here. Not only professional knowledge, but the ability to ask: What does this understanding do to the human being? Does it give more room for life, or less? Does it make the other more visible, or more alien? Does it open participation, or justify exclusion?

Historical Justice

Aging with autism is not only about services, housing, health, loneliness, and practical assistance. It is also about historical justice. It is about looking back at the children who were defined by the wrong language and asking what actually happened to them. Who received help? Who was overlooked? Who was made smaller than they were? Who was sent away? Who learned to mask? Who became silent? Who learned to make themselves harmless in order to remain within the community?

This should not become a simple indictment of the past. It is too easy to judge earlier generations from the safety of the present. Many did the best they could within the understanding available to their time. But precisely for that reason we must dare to examine the understanding itself. For when an era lacks good concepts, it can do harm without knowing it.

This is where practical philosophy matters. It reminds us that knowledge must always be joined to wisdom. Professional power must be accompanied by humility. Diagnostic categories must be used with care. Professionals must ask not only what they see, but how they see. They must ask which view of the human being lies hidden in their methods, interventions, and words.

The forgotten generation should not remain forgotten.

Older autistic people are not only late diagnoses. They are witnesses to a time. They carry experiences that cannot be found in assessment forms. They know something about what it was like to be different before difference had a name. They know something about what wrong concepts can do to a child’s life. They also know something about strength, adaptation, creativity, and survival.

For autistic children do not disappear when they become adults. They become adults. They grow old. And some of them now sit with memories from a time that misunderstood them — and with a language that may finally begin to give the child back his or her dignity.

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