History of Autism Spectrum Disorder

🌈♾️History of Austism Spectrum Disorder (ASD) 🌈♾️

The history of Autism Spectrum Disorder (ASD) is filled with remarkable stories. Our understanding of ASD has evolved through many myths and misconceptions. Which is why WAAD is important to understand the facts as well as celebrate the unique talents and skills of persons with autism around the world.

1940s

The word autism comes from the Greek word "autos”, which means "self”. The term autism was initially described as a group of symptoms thought to be related to schizophrenia due to "atypical and withdrawn behavior.”

It was not until 1943 that an Austrian-American psychiatrist, Dr. Leo Kanner, published papers about children with “high intelligence but who displayed a desire for aloneness and insistence on sameness” that autism as we understand it today began to take form. It was also considered to be a “rare” condition at the time. The first person ever to be diagnosed with autism was Don Triplett (age 89) who is still currently living in Mississippi. His story is explored in a film called "In A Different Key."

In 1944, Hans Asperger, described a “milder” form of autism, which later became known as Asperger’s Syndrome. He reported cases where the patients were all boys and had high intelligence but had problems in social interactions.

1960s

In 1967, Bruno Bettelheimt, popularized the theory that autism was the result of cold and inattentive mothers, coining the term “refrigerator mothers”. We now know this to be completely untrue and this theory has been debunked. At this time, researchers did not consider the biology or genetics involved, but only looked at the impact of life experiences.

1980s

For the first time in 1980 ”infantile autism” was listed in the Diagnostic and Statistical Manual of Mental Disorders 3 (DSM-3) and was differentiated from the diagnosis of childhood schizophrenia. Years later in 1987 the term was changed to “autism disorder” for a more inclusive definition and included a checklist for diagnostic criteria in order to eliminate the lack of consistency between diagnoses made by clinicians.

1990s

Dr. Temple Grandin, a prominent author and speaker on both autism and animal behavior at Colorado State University wrote ‘Emergence - Labeled Autistic’ (1996), which described her life with autism. Diagnosed with autism when she was three, Dr. Grandin’s mother rejected her doctor’s advice to institutionalize her, and provided her with intensive speech therapy, a structured home and a nurturing school environment. Later, with encouragement from her high school science teacher and an aunt who ran a ranch in Arizona, Dr. Grandin pursued a career in animal science. With unique abilities to think visually and recall small details she began to design humane live-stock handling equipment, eventually revolutionizing the industry. Today over half the cattle in North America are handled in a system she designed.

The controversial topic of Autism being linked to vaccines emerged in 1998, when a study was published in The Lancet that the measles-mumps-rubella (MMR) vaccine caused autism. Later on, many other studies quickly debunked this theory and the article was retracted, however, the idea that vaccines cause autism became a popular misconception.

In 1999, the Autism Society of America created the puzzle piece ribbon as a symbol of autism awareness. The Autism Society stated that, “the puzzle piece pattern reflects the complexity of the autism spectrum. The different colors and shapes represent the diversity of the people and families living with the condition. The brightness of the ribbon signals hope – hope that through increased awareness of autism, and through early intervention and access to appropriate services/supports, people with autism will lead full lives able to interact with the world on their own terms.”

2000s and onward

In protest of the puzzle piece symbol being used for autism, autistic self-advocates have used sayings such as, “People, not puzzles,” “I am not a missing piece,” and a common saying in the disability community, “Nothing about us without us,” as the puzzle piece symbol was made without the involvement of autistic people. More autism-positive symbols, including the rainbow infinity loop for neurodiversity, were made by autistic advocates such as Judy Singer, who coined the neurodiversity term and promoted the social model of disability at a time when even less was publicly known about the needs of autistic people.

The symbol was first used on Autistic Pride Day on June 18th, 2005. It was created using a different perspective than previous symbols and to raise awareness all year round. The use of a rainbow spectrum in the infinity symbol was designed to drive awareness of the diversity among neurodivergent individuals. The rainbow-colored infinity symbol is a popular symbol among autistic people and autism rights advocates, symbolizing a broad and varied spectrum of experiences. 🌈♾️

Finally, in 2013 the DSM-5 gathered all of the condition subcategories under the umbrella diagnosis of autism spectrum disorder (ASD) in 2013. Asperger Syndrome is no longer a separate diagnosis. Autism Spectrum Disorder is now defined by two categories, namely the impaired social communication and restricted/repetitive behaviors.

But what about the future of autism?

Autism is considered one of the fastest growing diagnoses in the world, with the diagnosis rate of children with autism increasing from 1 in every 2000 children in the 1970's/80's to 1 in every 68 children today. However, the notion that autism cases are on the rise is disputed considering the escalating diagnoses largely result from a greater awareness of autism. There have always been many autistic people and we are just now starting to grasp the range of the spectrum. These disparities are also due to sex, race, and ethnicity.

• There is 1 female for every 4 males diagnosed with autism. As more is known about autism, there is a growing awareness that these gender and sex differences may be more complex than we originally thought.
• In the U.S, white children are about 19 percent more likely than Black children and 65 percent more likely than Hispanic children to be diagnosed with autism (Furfaro, 2017).
• Additionally, Black American children were 5.1 times more likely to be misdiagnosed with conduct disorders, adjustment disorders before being diagnosed with ADHD or Autism (Mandell et al., 2007).
• Indigenous people have the lowest rate of autism diagnosis of any racial group in the United States (Drexler, 2018). One study found that indigenous children were 13% less likely to be identified as autistic (Bennett et al., 2021).
• Asian American children with disabilities are consistently underrepresented in research, underserved, and receive lower-quality support and rehabilitation than other groups. The research on Asian American representation of autism is mixed (Source and Foley, 2019). Unfortunately, these kinds of disparities have contributed to many late diagnoses.

Our understanding of autism is still in its early stages, and there is still much to be learned and discussed.

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