If you’ve spent time around someone on the autism spectrum, you’ve probably learned the basics: use people-first language, be empathetic, hold space. Understanding where these guidelines come from, however, is a different kind of education entirely. The history of autism in America is a story of wrong turns, determined parents, and science slowly catching up with what families already knew.
The early years (1940s)
It all started with two researchers working independently and arriving at the same place. In 1943, Johns Hopkins psychiatrist Leo Kanner published a landmark paper describing children with “extreme autistic aloneness.” His observations were precise and important, but buried in them was a troubling note about emotional coldness in the parents he studied, a seed that would take root in the worst possible way. A year later, in Vienna, Hans Asperger described a group of children he called “Little Professors,” who were highly verbal, intensely focused, and socially adrift. Both men had mapped the same spectrum without knowing the other existed.
The blame years (1950s–1970s)
Bruno Bettelheim, an Austrian psychologist who taught at the University of Chicago, took Kanner’s seed and ran with it. His 1967 book “The Empty Fortress” declared autism the product of cold, unloving mothers, and a generation of families drowned in guilt for something that was never their fault. Children during this era were frequently misdiagnosed with Childhood Schizophrenia. Therapy focused on compliance. Institutions were a common outcome. Meanwhile, Dr. O. Ivar Lovaas was developing early ABA therapy, which at the time included the use of aversive methods that are not considered acceptable today. Success was measured by how well a child could pass for neurotypical.
The institutional years (1960s–1980s)
Under Bettelheim’s influence, institutions became the default answer for families who had run out of other options. Many children were institutionalized throughout the 1960s and 1970s, effectively rendering the condition invisible to the general public and freezing the estimated prevalence at around one to four years of age in 10,000 children. Families were told this was the compassionate choice, but there was more to the official storyline.
The most notorious example stood on Staten Island. Willowbrook State School opened in 1948 as the largest institution in the world for people with developmental disabilities, built on the premise that a productive, fulfilling life was simply not possible for this population. At its peak, it held over 6,000 residents. In 1972, investigative reporter Geraldo Rivera smuggled a camera inside and broadcast what he found to a national audience. The outcry triggered landmark legal action, court-ordered reforms, and the institution’s eventual closure in 1987.
The backlash reshaped federal policy. Over the two decades that followed, hundreds of state hospitals and residential centers closed as deinstitutionalization moved people from long-term facilities into community settings. Group homes replaced wards, but funding was inconsistent, and community support was thin. In 1975, Congress passed the Education for All Handicapped Children Act, which later became the Individuals with Disabilities Education Act (IDEA) in 1990, guaranteeing every child with a disability a free appropriate public education in the least restrictive environment possible. Before that law existed, U.S. schools educated only one in five children with disabilities. The act drew a line. A child with autism now had a legal right to a classroom.
Getting closer (1980s–2012)
Parents pushed back, researchers followed, and the picture slowly sharpened. Advocacy groups founded by families began pressuring institutions to reexamine the science, and the refrigerator mother theory was formally discredited by the late 1970s. The DSM-IV, published in 1994, introduced separate diagnostic categories including Asperger’s Disorder and PDD-NOS, giving clinicians a broader toolkit. As awareness spread, diagnosis rates climbed sharply, and headlines warned of an epidemic. What was actually happening, researchers now understand, was better recognition of a condition that had always been there, finally being seen for what it was.
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One overarching umbrella (2013–today)
In 2013, the DSM-5 merged Autistic Disorder, Asperger’s, and related diagnoses into a single Autism Spectrum Disorder, replacing broad functioning labels with three support levels tied to actual needs. The change was controversial in some corners of the community, particularly among people who identified strongly with the Asperger’s label, but it reflected a growing scientific consensus that the spectrum was exactly that. ABA therapy shifted away from compliance and toward genuine wellbeing, asking not how to make a child appear typical but how to help that child thrive on their own terms.
To better explain these changes, here’s a quick reference guide to explain the major vernacular changes post 2013:
Additionally, here are some words related to autism you will likely hear, post-2013:
- The Spectrum: Not a line from “a little” to “a lot,” but a color wheel of traits, such as sensory, motor, and social (Source: Frontiers in Integrative Neuroscience).
- Neurodiversity: The idea that brain differences are natural variations, not “errors.” (Source: The Neurodiversity Movement.)
- Support Levels: Doctors now use Level 1, 2, or 3 to describe how much help a person needs in daily life, rather than “functioning” labels (Source: Rise Up for Autism).
- Neuro-Affirming Care: The current gold standard. It respects autistic identity and focuses on building skills for a happy life rather than “acting normal” (Source: National Library of Medicine).
1965 vs 2026: Comparing diagnoses & treatment processes
To illustrate how far autism care has come over the years, let’s take a look at two hypothetical children, Arthur and Leo.
The year is 1965, and Arthur is six. He loves the way light reflects off spinning coins and can watch them for an hour. He does not speak or respond to his name. His doctor diagnoses him with Childhood Schizophrenia and tells Arthur’s mother the cause is her. Not enough warmth. She reads every parenting book she can find, looking for the page where she went wrong. There is no such page, though nobody in 1965 could tell her that. His therapy focuses on compliance, and when he flaps his hands, they are held down. The word “institution” floats around the room.
The year is 2026, and we meet another six-year-old Leo. He loves spinning objects and communicates through a tablet. Diagnosed at age two, his parents were told that what they were seeing was neurology, not a failure of parenting. His ABA sessions are child-led, and when he becomes frustrated and throws a toy or drops to the floor, his therapist sees it as communication. Instead of simply trying to stop the behavior, she works to understand what Leo is trying to express and helps him build a more effective way to communicate, perhaps by using his tablet to ask for help or request a break. He attends school with a plan built around his strengths.
Arthur and Leo are sixty years apart. They are the same child. What changed was every adult in the room. That shift still has far to go. Early diagnosis remains the most powerful tool available.
The distance between then and now is significant, but it is not complete. A recent survey of more than 500 clinicians found that many families still wait four months or longer (up to 24 months) for an autism evaluation. The CDC tracks early signs precisely because early diagnosis remains the most powerful tool available. Science and language have both come a long way, but for families navigating a system still catching up, the distance between what researchers understand and what a parent experiences in a waiting room remains wider than it should be.
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This article originally appeared on Earlipointhealth.com and was syndicated by MediaFeed.org
