The understanding of autism has come full circle—from Kanner’s original view that it is a lifelong condition, to the mid-century belief that it was something you might grow out of, and now back to recognizing autism as a spectrum of experiences that continue into adulthood. This evolving perspective has profound implications for how we support and accommodate autistics at every stage of life.
Kanner’s Early View: Autism as a Lifelong Condition
In 1943, child psychiatrist Leo Kanner published his groundbreaking paper on autism, describing it as a rare but distinct developmental disorder. He identified autism as a condition that appeared from early infancy and persisted throughout life, believing it to be innate. His observations of children with social difficulties, repetitive behaviors, and an “insistence on sameness” led him to conclude that these traits were deeply embedded and unlikely to disappear.
Kanner’s view of autism was revolutionary at the time, as he set autism apart from other mental health conditions. He noted that while some children might improve with intervention, autism itself was a lifelong condition. This perspective laid the foundation for early autism research and clinical practice.
The Shift: Autism as a Childhood Disorder
By the mid-20th century, the focus on autism began to shift, and the condition came to be viewed more as a childhood disorder. Several factors contributed to this change:
Lack of Longitudinal Data: In the early years of autism research, there was little long-term data on how autistic children fared into adulthood. Without follow-up studies to track their development, the focus remained on interventions aimed at children, especially those designed to improve communication and social skills. This narrow focus reinforced the belief that autism was primarily a childhood condition, and there was little understanding of how the condition evolved across the lifespan.
Influence of Developmental Psychology: During the 1950s and 1960s, autism was studied within the context of developmental psychology, which emphasized stages of growth in children. Autism became viewed through the lens of early childhood development, which often led to the assumption that autistic children could “grow out of” the condition. The lack of focus on adult outcomes further entrenched the belief that autism was something that primarily affected children.
Institutionalization and Societal Factors: A significant factor in the mid-century shift was the institutionalization of autistic individuals, especially those with more severe symptoms. During much of the 20th century, many autistic children were placed in institutions, often isolated from the community. This removed many autistic adults from public view (out of sight is out of mind) and contributed to the idea that autism was primarily a childhood disorder. Without tracking autistic individuals into adulthood, the misconception persisted that autism either diminished over time or became less visible as people aged.
DSM-III and the Diagnostic Focus: The third edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-III), published in 1980, played a role in reinforcing the view of autism as a childhood condition. The DSM-III categorized autism as a disorder that first appeared in childhood, and it did not fully address how autism might manifest in adults. While this edition was important in standardizing the diagnosis, it contributed to the ongoing focus on childhood autism.
The Shift Back: Autism as a Lifelong Spectrum
In the late 20th century, research began to challenge the idea that autism was solely a childhood disorder. Several key developments led to the shift back to recognizing autism as a lifelong condition:
Longitudinal Studies in the 1970s and 1980s: As researchers began following autistic individuals into adulthood, they found that many core features of autism—such as social and communication challenges—persisted throughout life. These studies demonstrated that while some individuals could develop coping strategies or improve in certain areas, autism did not simply go away with age. This long-term data challenged the earlier view that autism was something children could outgrow.
Broader Recognition of the Autism Spectrum: The 1994 publication of the DSM-IV marked a turning point in how autism was understood. The DSM-IV expanded the definition of autism to include related conditions, such as Asperger syndrome and Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS). These changes reflected a growing awareness that autism manifested differently in individuals and affected people across the lifespan. The concept of an autism "spectrum" began to take hold, highlighting the diverse experiences of autistic individuals, including those who may have been overlooked in earlier childhood-focused models.
Advocacy and Autistic Voices: The voices of autistic adults themselves began to play a key role in shifting the narrative. As more autistic individuals spoke about their experiences, it became clear that autism affected them well into adulthood, and they advocated for recognition, rights, and support that extended beyond childhood. This push for greater inclusion helped drive the shift toward understanding autism as a lifelong condition.
DSM-5 and the Unified Spectrum: The publication of the DSM-5 in 2013 solidified the shift back to understanding autism as a lifelong condition. The DSM-5 introduced the term Autism Spectrum Disorder (ASD), which combined previous diagnoses under one umbrella. By viewing autism as a spectrum, the DSM-5 recognized that autism presents differently in individuals and persists across all stages of life. This marked a significant step toward integrating the idea that autism is not something one grows out of but a lifelong condition that requires ongoing understanding and support.
The Implications of a Lifelong Understanding
The return to understanding autism as a lifelong spectrum has profound implications for how society supports and accommodates autistic individuals. With this recognition, there is a growing focus on services that support autistic adults in areas such as employment, healthcare, and independent living. This shift also emphasizes the need for tailored support throughout different life stages, including transitions from school to work and aging as an autistic adult.
Additionally, this broader understanding allows for more research into the needs of autistic adults, including mental health, relationships, and aging. As society moves away from the childhood-only model of autism, there is greater awareness of the spectrum of experiences that autistic individuals face, and a commitment to supporting them throughout their lives.
In PlainSpeak: Plain Language for the Lay Reader
The understanding of autism has come full circle—from Kanner’s original view that it is a lifelong condition, to the mid-century belief that it was something you might grow out of, and now back to recognizing autism as a spectrum of experiences that continue into adulthood. This shift has significant implications for how we support and accommodate autistic individuals throughout their lives.
Kanner’s Early View: Autism as Lifelong
In 1943, Leo Kanner first described autism as a lifelong condition. He believed it appeared in early infancy and persisted into adulthood, noting traits like social challenges, repetitive behaviors, and a need for sameness. Kanner thought that while some children could improve with intervention, autism itself was unlikely to disappear.
The Shift to Autism as a Childhood Disorder
By the mid-20th century, autism came to be viewed primarily as a childhood disorder. Several factors contributed to this shift:
Lack of Longitudinal Data: Early research on autism didn’t track autistic individuals into adulthood, leading to the focus on childhood interventions. The lack of long-term studies contributed to the misconception that autism was a childhood condition.
Developmental Psychology Influence: Autism was often studied within childhood development models, reinforcing the idea that it was something children could potentially "grow out of" as they developed.
Institutionalization: Many autistic children were institutionalized, particularly those with severe symptoms. This removed autistic adults from public view, further reinforcing the idea that autism primarily affected children.
DSM-III (1980): The DSM-III reinforced autism as a childhood disorder, as it primarily focused on diagnosing autism in children and didn’t fully address how autism manifests in adults.
The Shift Back to Lifelong Understanding
By the 1970s and 1980s, research began to show that autism was not something individuals outgrew. Several developments led to the recognition of autism as a lifelong condition:
Longitudinal Studies: Research following autistic individuals into adulthood revealed that many core traits, such as social and communication challenges, persisted throughout life.
Broader Spectrum Recognition: The 1994 publication of the DSM-IV expanded the definition of autism to include related conditions like Asperger syndrome, acknowledging that autism manifests differently across the lifespan.
Autistic Advocacy: Autistic adults began advocating for recognition and support, making it clear that autism affects people well into adulthood, driving a push for lifelong understanding.
DSM-5 (2013): The DSM-5 introduced Autism Spectrum Disorder (ASD), recognizing that autism exists on a spectrum and persists across all life stages. This marked a formal acknowledgment that autism is not something people grow out of, but a lifelong condition requiring ongoing support.
Implications of a Lifelong Perspective
This shift back to viewing autism as lifelong has significant implications for how society supports autistic individuals. There is now a greater focus on providing services for autistic adults in areas like employment, healthcare, and independent living. As the understanding of autism grows, so does the commitment to supporting autistic individuals at every stage of life, ensuring that their needs are met not only in childhood but well into adulthood.