What’s in a Name? The History of Autism Spectrum DisorderLearn how the term for people with autism has changed over time

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According to the Centers for Disease Control and Prevention (CDC), autism spectrum disorder is the fastest-growing developmental disability in the U.S. It’s also one of the most talked about in the media and by families across the country. But where did the term autism spectrum disorder or ASD come from? To find out where it all began, one would have to go back more than 100 years.

Understanding the Evolution

In 1877, a British doctor named John Langdon Down used the term “developmental retardation” to describe symptoms that often occur in people with autism.1 At that time, “developmental retardation” referred to developmental delays. Then in 1908, Swiss psychiatrist Eugen Bleuler came up with the concept of “autism.” He used it to describe a group of patients with schizophrenia who seemed withdrawn, uninterested in others and unable to communicate effectively. The reason he chose the term “autism” is because it’s based on the Greek word “autos,” which means self.2

Several decades later, Leo Kanner, a child psychiatrist at Johns Hopkins University, published a paper in 1943 where he introduced the term “early infantile autism.” Kanner noticed that patients in his clinic displayed similar characteristics as Bleuler’s patients. The difference was that Kanner’s patients started to show those symptoms at birth.3

Over time, more research was done to understand autism and its possible causes – like genetics or the environment. Then in 1980, the American Psychiatric Association’s third edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM) included “infantile autism” as a separate diagnosis from schizophrenia.4

It also became clear that autism is not a single condition. Symptoms can vary wildly from person to person and range from mild to severe. While some individuals may have difficulties with communication skills, others may have behavioral difficulties. So, in 1994, the fifth edition of the DSM began using the term “autism spectrum disorder” to refer to a broader range of conditions such as Asperger’s syndrome.5

Why Language Matters

Today, we continue to use the term autism spectrum disorder. But we need to consider how we use it when talking to or about someone with this disorder. For example, one individual may want to be known as a person with autism whereas another individual may consider themselves an autistic person. Since everyone is different, it’s best to ask people how they like to be identified. Although some individuals may not have the communication abilities to tell you what they prefer.

It’s also important to note that up until recent history, “mental retardation” was a common clinical diagnosis for people with intellectual disabilities, including autism. But since it has been turned into a hurtful, derogatory term, most doctors no longer use it. Similarly, words like idiot, imbecile and moron were once medical terms used to classify people with intellectual disabilities – until people started using them as insults.6

Making Meaningful Change

To help promote more inclusive language for people with intellectual disabilities, former President Obama signed Rosa’s Law in 2010. Since then, the government has been working to replace “mental retardation” and “mentally retarded” with “intellectual disability” in all federal health, education and labor policies. Besides the government, other public and private organizations are getting rid of those outdated terms in the language they use as well.

By talking about the incredible strengths and abilities of people with ASD, we can help prevent autism spectrum disorder from becoming a misused term in the future. However, it’s up to all of us to speak up and make sure that people with ASD receive the dignity and respect they deserve.

[1] What Was Autism Called Before It Was Called Autism?

[2] Autism History

[3] Leo Kanner, Hans Asperger, and the Discovery of Autism

[4] Autism in the DSM

[5] The Evolution of ‘Autism’ as a Diagnosis Explained

[6] History of Stigmatizing Names for Intellectual Disabilities Continued