The term autism was coined in 1911. At that time, it was simply used as an identifying symptom of schizophrenia, another mental illness discovered in 1887. It was not considered its own formal diagnosis until 1980, and even then there was not a clear-cut list of features and traits required to be considered autistic. Early on in the times where mental health was first being studied, anyone who was thought of as different was immediately locked away and subjected to inhumane treatment. Over the years, more and more attention has been placed on mental health research, including research on autism. There have been many advancements in the field, leading to a more widespread understanding and acceptance of the disorder and a rise in the accessibility of everyday life to all those with a disability. The road from autism being a definition of another diagnosis to the well-known, formal diagnosis of Autism Spectrum Disorder would not have been possible were it not for government investment, symptom perception in the public eye, and scientific research. Initially, the government took a very harsh stance against people with mental illnesses. It was scary to face people with such prominent differences from the majority of the world, so it became the norm to lock up these people and keep them away from the rest of the population. They were thrown into a life with terrible conditions and no support for what they needed. The government went as far as to deem the sterilization of people with disabilities legal, and even framed it as a protective measure for the rest of the public. After many years, more was learned about mental disabilities and the government completely shifted its perspective. It began enacting laws to help the people in the community who need a little more support. Laws such as the Community Mental Health Act, the Education for All Handicapped Children Act, and the Americans with Disabilities Act were all put in place to help assist people with disabilities and ensure that they are provided with the help they need in their daily lives. In addition to the political shift from controlling to supporting those with mental disabilities, the general public also had a change of heart after more was learned about mental health. Back when institutionalization was at its peak popularity, it wasn’t sustained by the government alone. The mindset of the population at that time agreed that people with mental illnesses were bad and should be kept away from everyone else. Even after sending people to institutions became illegal, the public still had concerns about individuals with autism. Some thought that the disorder was caused by bad parenting and that the way to fix it was with a strict system of punishment and rewards for certain actions. This idea held strong for many years, causing people with autism to be mistreated and misunderstood. What really helped flip the perspective of the world was passionate people who were willing to tell their story. A few well-known people slowly started stepping up and sharing how autism affected their lives and the lives of their loved ones. Coming from people that the public knew and loved, these stories portrayed autism in a more humanistic light than ever before. This newfound public awareness and care for people with autism helped push the limits of research even further, allowing more great advancements to be made. As crucial as government policies and public perception of symptoms are, they would not have been sufficient to support the growth in the field of autism. They needed the help of science. Autism would have remained a simple defining word of schizophrenia and no other discoveries would have been made about it if it weren’t for curious, dedicated scientists. Over the course of many research studies and advancements in readily available scientific instruments, scientists have created and refined many theories, tests, and hypotheses about how autism works. Because of the scientific discoveries that have been made over the years, we now have a better understanding of why autistic people feel and act the way they often do and how we can support them with everything they need. Today, there is an immense amount of resources available for autistic people, and there is a much more widespread acceptance for those diagnosed with the disorder and for those with mental disabilities in general. However, none of this could have been possible without the combined help from the advances in scientific knowledge, the public expressing their thoughts, and the government changing their policies. Because these three things have grown together and balanced each other out over the history of autism, we were able to arrive at the modern-day classification of autism - Autism Spectrum Disorder.
The term "autism" was coined in 1911 by the German psychiatrist Eugen Bleuler to describe a symptom of severe cases of schizophrenia, a medical concept he had created a few years earlier.
Through Eugen Bleuler's description of autism, a view on how autism presents in people formed. It was thought of as the childish desire to avoid reality and replace it with a fantasy world. This is that person's "inner world" and it cannot be accessed by observers.
Goddard theorized that feeblemindedness was inherited. This included characteristics ranging from alcoholism, to criminal behavior, to characteristics that we now know are caused by different mental disabilities. Goddard argued that the only way to stop this epidemic was with eugenics (the practice of deliberately breeding and sterilizing certain humans by force in order to create a people with the perfect set of genes).
The United States Supreme Court passed a law that permitted compulsory sterilization of intellectually disabled people, "for the protection and health of the state".
Lauretta Bender, the head of the children's psychiatric service at Bellevue Hospital, published the Bender-Gestalt Test. This is a psychological test designed to assesses visual-motor functioning, developmental disorders, and neurological impairments in children ages 3 and older.
Leo Kanner, known as the "father of child psychiatry", published a paper in which he described his experience observing people with autism. He noted that all of the children he observed were highly intelligent but they also had a strong desire to be alone have a consistent routine. He came up with the term "infantile autism" for those children that he observed with the infantile desire to keep to themselves and their schedule. Kanner clinically diagnosed the first ever case of autism to a three-year-old child named Donald Gray Triplett. He felt that Donald's unusual behaviors made him deserving of the newly invented diagnosis.
Hans Asperger described “Autistic Psychopathy” and defined a particular type of autism in which the person seems “closer to normal.” The people who he put into this category struggled mainly with social interactions, the need for repetitive movements and routines, and motor coordination impairments, while their intellectual abilities remained above average. This was later known as Asperger's syndrome. Asperger believed that the disorder tended to run in families, with the intense need to pursue strong interests destroying familial relationships.
Later shortened to the National Association for Retarded Children (NARC) in 1953, this association was founded to promote “community recognition and understanding of the problems facing retarded children and their parents, support for national research, and advocacy for improvement of facilities and services for the retarded in the community” (Brochure, 1955).
The first edition of the DSM was published by the American Psychiatric Association. It mentioned autism, but only to describe “Schizophrenic reactions appearing before puberty”.
Pearl Buck, an American writer best known for her novel "The Good Earth" and for winning the Pulitzer Prize in 1932, was one of the first famous people to openly talk about having a “mentally retarded” child. She wrote a book called "The Child Who Never Grew" that described her relationship with her oldest daughter, who was born with a rare type of mental disability. Her book helped demolish cruel assumptions surrounding learning disabilities.
Renamed the American Academy of Child and Adolescent Psychiatry in 1989, the AACAP is a non-profit medical organization whose mission is to promote mentally healthy children, adolescents, and families through research, training, advocacy, prevention, collaborative diagnosis and treatment, and peer support.
The League for Emotionally Disturbed Children was founded in 1950. In 1953, they carried out their mission of creating a place where parents could go to seek help for their children and children could go for the assistance they need. They opened an experimental private day school in Brooklyn to provide education for kids with severe behavioral and emotional disorders (children who were all excluded from mainstream public schools up until this point).
Dale Evans and Roy Rogers, stars of a popular television program in the 1950s, had a daughter with mental disabilities. They were shocked when they were advised to send her to an institution rather than raising her at home. Instead of keeping quiet, the couple decided to make their story public and write a book. The story in "Angel Unaware" poses children with disabilities in a better light than ever before, changing the way parents view their special needs children and the way people view peers that are different than them. Royalties from this book were used to fund the Arc (an organization that pioneered the path of advocacy for people with disabilities in government laws and spent a significant portion of their budget on some of the first research projects regarding intellectual and developmental disabilities).
Eunice Kennedy Shriver, best known for being the founder of the Special Olympics, the world's largest sports organization for people with intellectual and physical disabilities, went public with the story of her sister with mental disabilities, Rosemary. She wrote about Rosemary's struggles at home during her childhood and into her adult life, the horrible conditions of institutions during those times, and the high levels of prejudice people with disabilities faced from the general public.
The Community Mental Health Act was an act to provide federal funding for community mental health centers and research facilities.
Bernard Rimland published this book that spoke about the biological causes of autism in honor of his son who was born with autism. "Infantile Autism" abolished the thought that hostile parents were to blame for the disorder, and instead turned the focus to biochemical defects in the brain.
Ivar Lovaas created the Lovaas Method, a form of behavioral therapy for children with disabilities. He thought that he could “re-mold” an autistic child's behaviors into more “normal” ones through a system of rewards and punishments, a similar method to the one used to train a dog to do a new trick.
The Elementary and Secondary Education Act act was amended to improve educational access for students with disabilities by encouraging states to expand their special education programs.
The National Society for Autistic Children was later renamed the Autism Society of America (ASA) to show that autism does not only exist in children, but also adults. This organization was established by Bernard Rimland, Amy Lettick, and other concerned parents of autistic children. The ASA's goal is to increase public awareness about autism and the day-to-day issues faced by autistic people, their families, and the other professionals that they interact with.
Clara Claiborne Park was a college English teacher who was best known for writing about her experiences raising her autistic daughter. Her memoir, "The Siege", was one of the earliest memoirs about parenting an autistic child. Park helped ease the guilt that mothers put on themselves thinking that they were the cause of their child's autism by rejecting the idea of "refrigerator mothers".
Bruno Bettelheim, a well-known psychologist and scholar, published a book called "The Empty Fortress" that further reinforced Bernard Rimland and Clara Claiborne Park's idea that autism was not caused by cold and uncaring parents. This book was backed up with scientific facts, leading the "refrigerator parent" theory to officially be widely accepted as disproved.
This term was first introduced in the Developmental Disabilities Services and Facilities Construction Amendments, which amended the Community Health Act to extend eligibility for services beyond individuals with physical disabilities to those with epilepsy, cerebral palsy, autism, dyslexia, and other neurological conditions. The definition of developmental disability required that it originates before a child is 18, it is expected to continue indefinitely, and it causes a substantial handicap.
The gay rights movement protested the DSM after it classified homosexuality as a mental illness. They argued that being gay wasn’t something that had to be cured like an illness, and the public agreed. This led people to question how reliable any diagnosis in the DSM was. As a result, the next edition of the DSM (the DSM-III) had much more organized and specific symptoms of every diagnosis - including infantile autism.
Both the Pennsylvania Association for Retarded Citizens vs. Commonwealth of Pennsylvania lawsuit and the Mills v. Board of Education of District of Columbia lawsuit challenged the exclusion of students with mental disabilities from public schools and established their legal right to free public education appropriate to their learning capacities.
Wolf Wolfensberger published "The Principle of Normalization in Human Services" that spoke about deinstitutionalization and normalization. It argued that conditions necessary for a normal everyday life should be made available to people with disabilities. It included policies and practices designed to abolish segregation and open community-based opportunities to people with developmental disabilities.
The EHA guaranteed a free, appropriate public education (FAPE) to every child with a disability in every state across the country. It required all public schools that accepted national funds to provide equal access to education and lunch meals for all children, including those with physical and mental disabilities.
A study was done where subjects were shown the lower half of people’s faces and asked to identify them. The faces were people that the subject knew well and saw in their daily lives. The results showed that autistic people were better at identifying the person than neurotypical people. This led to the realization that autistic people focus on smaller details, not full pictures.
Autism was mentioned as its own separate diagnosis in the DSM for the first time. The definition described a lack of social responsiveness that was consistent with Kanner's first description of the condition. Some of the criteria stated included appearance before 30 months of age, deficits in language development, and unusual attachments to objects.
Lorna Wing, a psychiatrist who specialised in the field of childhood developmental disorders, published a clinical account of Hans Asperger’s work. Papers were published explaining physical features and patterns of behavior of those with what was soon to be called Asperger's Syndrome. Notes about communication, social skills, motor-coordination, and special interests were also shared. This helped spread knowledge about Asperger's Syndrome, leading to the eventual inclusion of Asperger's Disorder in the DSM in 1994.
Temple Grandin became a prominent author and speaker, spreading the story of her experience growing up as an autistic person in a time where the disorder was not yet fully recognized by society. She became very famous for her bravery and confidence in sharing her story, and she inspired many others to do the same.
The DSM-III-R (revised version) replaced the term infantile autism with the term autistic disorder and increased the number of symptoms necessary to receive a diagnosis. A system of how many symptoms from different categories you needed to be diagnosed was created.
The Americans with Disabilities Act prohibits discrimination against people with disabilities or people who are referred to as having a physical or mental impairment that substantially limits one or more major life activity. From voting rights to service animals to accessible parking, the ADA helps people with disabilities in many aspects of public daily life.
Functional MRI technology becoming more readily available allowed more autistic people to get tested. This led to scientists finding connections between the brain scans of autistic people. From this, a concrete diagnosis and a better understanding of what autism disorder is formed with a more scientific backbone.
The DSM-IV added Asperger's Syndrome as a separate diagnosis from autism. The difference between the two presented itself mostly within speech delays. If someone had autistic symptoms but did not have any sort of speech delay, they were considered to have Asperger's. Often times Asperger's was associated with higher-functioning (meaning, fewer or less extreme presenting symptoms) people as opposed to more severe cases of autism.
The term "neurodiversity" was coined by Australian sociologist Judy Singer and American self-advocate Jane Meyerding. Singer argued that “the neurologically different represent a new addition to the familiar political categories of class/gender/race and will augment the insights of the social model of disability.” After diagnosing herself with Asperger Syndrome, Meyerding wrote that “all of us (humans) will benefit when our societies acquire a wider appreciation of neuro-diversity.”
Andrew Wakefield and his colleagues published a paper in the journal Lancet hypothesizing that the measles, mumps and rubella (MMR) vaccine caused a series of events that led to the eventual development of autism in children. Dr. Wakefield brought examples of twelve kids who developed symptoms of autism within one month of receiving the MMR vaccine.
The National Society for Autistic Children adopted the puzzle ribbon as a universal sign of autism awareness. The puzzle pieces on the ribbon represent the complexity of the autism spectrum. Each piece was made a different shape and color to show that no two autistic people are the same.
The AQ test is a self-administered questionnaire. There are three different tests designed for different age ranges (4-11, 12-15, 16 and up). The test for younger kids is to be filled out by parents or guardians who have observed the child's behaviors over time. There are fifty statements that give you the choice of definitely agree, slightly agree, slightly disagree, or definitely disagree. The score ranges from 0-50, with 26 as the threshold score (scores 26 or greater indicate you might be autistic). The mean AQ score of autistic people is 35.8 and the mean AQ score of neurotypical people is 16.4.
Autism Speaks was originally founded by Bob and Suzanne Wright, grandparents of an autistic child, to help raise funding for autism research. On the outside, their goal was to provide support, resources, and services to individuals with autism, but, in reality, they sent the majority of their funding to finding a cure for autism without revealing this to their donors. They also looked into finding the genetic markers for autism so that a family can know if their child will have autism before they are born.
The Wechsler and Raven tests were created and administered to prove that an autistic person's intelligence cannot be given a number just by one test. Different methods yield different results. The Wechsler test includes some verbal components, causing many more autistic people to present as lower-functioning, while the Raven’s test was able to be done completely non-verbally, qualifying more test takers as having high intelligence. This discrepancy in the two intelligence tests on the same subjects led scientists to realize that intelligence has been underestimated in autistic people.
Tito Mukhopadhyay was diagnosed in early childhood with severe low functioning non-verbal autism. Despite his disability, Mukhopadhyay started writing at a very young age. By the time he was nineteen, he was already on his third book. He published "How Can I Talk If My Lips Don’t Move?" in 2008 to explain how his mind works to the world. He told the story of how people figured out he was smart even though he couldn't talk. He was just a young boy, trapped in his own body, working hard with his mother to learn how to write in order to finally express himself.
Autism Speaks released a commercial titled I AM AUTISM. This commercial displayed autistic children at their worst and explained why this disorder is so devastating for the kids and their families. This was an attempt to raise funding to find a cure.
A series of studies were done on autistic people’s reaction time and ability to act fast. The study showed that when things move too quickly, autistic people can’t always keep up. Their natural reaction is to withdraw from their surroundings and shut down. Following this study, a software was developed that slowed down auditory and visual cues to a point where autistic individuals were able to understand, process, and respond appropriately.
After years of controversy over Andrew Wakefield’s hypothesis on the link between the MMR vaccine and autism, The Lancet retracted the study after many others disproved the theory. Time and time again it has been proven by many distinguished scientists that vaccines do not cause autism.
The DSM-5 removed the diagnosis of Asperger's Syndrome and reclassified it as part of an all-encompassing diagnosis of Autism Spectrum Disorder (ASD).
The diagnosis of Autism Spectrum Disorder is the result of a long history of scientific research, government involvement, and perception of symptoms in the mental health world. Starting from a simple term used to describe another disorder, scientists have redefined what autism is and what it means to have it. Accessibility, awareness, and acceptance of the disorder have skyrocketed since its early years as an official diagnosis in the Diagnostic and Statistical Manual of Mental Disorders. This is all due to the inclusive government policies, brave figures in the public eye who were willing to tell their story, and scientific advancements that have evolved over the past century. Just because we have arrived at well-grounded criteria for being diagnosed with ASD does not mean that our research ends here. We must continue to support autism research, advocate for those who can’t do it themselves, and, of course, ensure that everyone is always included, no matter what their abilities or disabilities are.
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