Autistic and neurodiverse individuals have been a part of society longer than we have had the terminology or language to define. When the term autism was introduced it was first intertwined with Schizophrenia. In 1911, Eugen Bleuler first used autism to describe symptoms of withdrawn individuals, and what he described as worst-case scenario Schizophrenia patients. Just over a decade later in 1922, Jean Piaget introduced a paper at the International Conference of Psychoanalysis, where he also used the term autism when describing preverbal stages of development. Some other scientists’ contributions, such as Sigmund Freud, introduced other terminologies to describe some similar behaviors, including autoerotism and primary narcissism, in response to Bleuler’s work particularly.
Moving forward to the 1930’s; this was a time of an increased general knowledge regarding child development - attributed to researchers such as Anna Freud and Melanie Klein. Recruitment of child participants of studies were arguably plentiful, though unethical via today’s standards. Many children found themselves in vulnerable positions - in a time where codes of ethics for research did not exist - separated from their parents. Having been evacuated from the cities due to war, they were utilized in various studies. Despite questionable ethics, easy access to an abundance of potential participants allowed for an increase of various developmental studies.
Around this time as well, the work of Leo Kanner and Hans Asperger - two names largely associated with the beginnings of society’s recognition and understanding of autism - were conducting their own work. For many years, it was largely thought their similar works, both introduced in the 1940’s, were original and independent from one another. However, Asperger was introduced to, and worked with, Georg Frankl and Anni Weiss - two child development practitioners/researchers in Vienna, Austria - in the early 1930’s. Frankl and Weiss’ works both revolved around behaviors associated with autism; Weiss was particularly interested in hidden intelligence and fixations, while Frankl focused on youth comprehension of emotional content in spoken words. Unfortunately by the late 1930’s, Weiss and Frankl were both forced to flee Vienna, as they were Jewish, and therefore at incredible risk. Much of their work and data had to be left behind - in hindsight, to Asperger’s benefit.
There are, indeed, striking similarities between the work of Asperger, and that of Weiss and Frankl. Asperger does not cite either in any of his work during the 1940’s, and it’s important to note that his work was also not translated to English until 1991, thus perpetuating the confusion. Most of Asperger’s work took place during the height of the Nazi era, in the late 1930’s after Frankl’s departure, and early 1940’s. Indeed, he used his position and relationship with the Nazi regime to further and manipulate his own interests in research. During this time he publicly advocated for and attempted to legitimize race hygiene policies, or eugenics. Asperger participated in forced sterilizations, and is known to have contributed to the Nazi’s child euthanasia program by seperating children identified with autistic traits. Only those who were valuable to his research were kept as (unwilling) participants.
Across the Atlantic Ocean, Frankl and Weiss were now in Baltimore, Maryland, USA. Here Frankl met and began working with Leo Kanner in the late 1930’s at John Hopkins Hospital. Ultimately, Kanner’s work was published before Frankl’s. Over the years, Kanner garnered more attention for his work and contributions than Frankl. However, some of Kanner’s proposals ultimately set back the understanding of autism, as he claimed that autism only exists within infancy, and introduced the “Refrigerator Mother” (RF) theory that was later popularized by Bruno Buttelheim in the 1950’s. The perspective of the RF theory aligned with the 1950’s societal perspective towards mental health. Behaviorism, the study of psychology via observable behaviors, was at the forefront during this period; mothers’ relationships with their children was something that could be observed.
Though progress had been made, the middle of the 20th century was notoriously plagued with mistreatment of those with mental health conditions, particularly in institutions. Nevertheless, this era was also highlighted by foundational efforts to outline and attempt to constructively treat psychological health. In 1952 the first version of the Diagnostic and Statistical Manual of Mental Disorders (DSM) was published. This first version only utilized the term autism once, in reference to Schizophrenia. Shortly after, in 1958, funded by the Medical Research Council, the Social Psychiatry Research Unit was established. The organization pushed for documenting observable behaviors to formulate a better understanding of mental health conditions. Shortly after, in 1959, the Mental Health Act went into effect in the UK. This marked the true beginning of closing mental institutions, after many years of sincere mistreatment in the country, and began a critical shift in general treatment perspectives.
Strides did occur in the 1950’s, though there was also a lack of unity within and between overlapping fields, such as Psychology and Psychiatry. Thus, a push for unified definitions related to mental health characterized the 1960’s. In 1968, following the pattern of being slightly behind recent literature, the 2nd version of the DSM was published. Autism was still associated with schizophrenia, describing “autistic, atypical and withdrawn behavior.” Despite this perspective of the time, the 1960’s laid a framework for the proposals and research of the 1970’s that began to recognize autism as a distinct condition. For instance, in the UK, Victor Lotter conducted and published a study in 1966 where he had teachers fill out surveys for over 76,000 students for 9 criteria commonly associated with the modern conceptualization of autism - including echolalia, visual avoidance, and aloof or distant behaviors.
In 1971, the Journal of Autism and Developmental Disorders was established; though it was initially named the Journal of Autism and Childhood Schizophrenia until 1979. Also in 1971, Israel Kolvin published a study where he described the phenology of two groups of participants. One represented a more modern concept of autism, and the other schizophrenia, as distinct conditions. This particular study was influential, as others who followed his design found similar results, which began a perspective shift to viewing autism as a communication disorder. The DSM published its third edition in 1980, finally separating autism from schizophrenia. Initially, the term introduced was “Infantile Autism”. However, a revision of the third edition, published in 1987, changed the name to “Autistic Disorder.”
The 1980’s were the beginning of comprehending autism as a spectrum. Simon Baron-Cohen, another notable name in autism research, in collaboration with a team of other researchers, introduced the idea of Theory of Mind (ToM) in 1985. Essentially, ToM is the ability of an individual to understand the mental states of another. ToM is often correlated with empathy; Baron-Cohen’s proposition was translated as autistic individuals lacking empathy - a common stigma that still exists today. However, Baron-Cohen’s work has, as with the term autism, evolved with our understanding. His more recent works explore various types of empathy, expanding on this foundational research. Nevertheless, it’s important to remember that from the 1980’s to the early 2000’s, many stigmas surrounding autism were introduced and perpetuated as many researchers and professionals sought to outline the concept of autism, and individuals of society misconstrued much of this information.
Lorna Wing, another widely established name in the autism field, was beginning to gain recognition around this time as well. In 1979, in coordination with Judith Gould, she published a study discussing how the pattern of impairments and behavioral problems had been mistermed when previously described, and introduced three key features of autism to distinguish it from other diagnoses. Though beneficial to understanding autism as its own diagnosis, this publication was written with some harmful language, in conjuction with the term retarded, identifying two groups: socially imparied and sociable severely retarded. Shortly after, in 1981, Wing, assumingly unaware of his collaboration with the Nazi regime, introduced the term Asperger’s, with her publication “Asperger’s Syndrome: a Clinical Account”, in an attempt to further expand the understanding of autism and begin to consider it from a more dimensional approach. As briefly mentioned, it’s critical to note when reviewing Wing’s work during this time, that Asperger’s work was not translated to English until 1991, in a paper by Uta Frith. Today, it is argued that many, if not all, of the individuals Asperger described would not meet the diagnostic criteria for Asperger’s utilized in the fourth version of the DSM.
When the DSM-4 was released in 1994, four subcategories were introduced to Autistic Disorder, signaling the approach to the belief that autism was not dimensional, but categorical. The four subcategories included Rett’s Disorder, Childhood Disintegrative Disorder, Pervasive Developmental Disorder - Not Otherwise Specified, and despite Asperger’s history, Asperger’s Syndrome. A particularly controversial study was published in 1998 by Andrew Wakefield. It became apparent, however, as other researchers tried to replicate his results for reliability, that Wakefield falsified the results of this study published in the Lancet, claiming an untrue correlation between vaccines and autism. Despite this study having faked results that led to Wakefield losing his medical license, and being rebuked on a multitude of occasions, some in the general population still believe in this illegitimate claim.
Heighted conversations and awareness surrounding autism occurred simultaneously with a notable increase of autism diagnoses around this time. With the number of diagnoses rapidly increasing in the early 2000’s, a variety of autism organizations were also established in response. Many of these organizations, despite having made some positive contributions, have unfortunately continued to perpetuate stigmas surrounding autism. In the 2000’s autism was mainly approached by professionals and society from the medical model perspective. Many viewed autism as an epidemic, exasperating fear and misunderstanding surrounding the term.
Fortunately, in the 2010’s, a shift in perspective began to occur as the social model of disability began to garner attention in comparison to, and in unison with, the medical model. In a general sense, the medical model seeks treatments for disabilities via medicines and therapies, whereas the social model aims to accommodate and support. The social model also may recommend various therapies, but more so focuses on general acceptance for disabilities and overarching societal accommodations that can be put in place. Increased implementation of the social model has contributed to a better understanding of variance within the autism spectrum. However, the medical model maintains relevance as, even if all the imaginable supports were put in place within society, autistic individuals will still experience difficulties. Sensory processing variations, difficulties innately developing social skills, gastrointestinal issues, and comorbid conditions such as learning disabilities (dyslexia), Ehlers-Danlos Syndrome, or epilepsy.
The 5th and most recent version of the DSM removed subcategories, and introduced Autism Spectrum Disorder - acknowledging the dimensional perspective to autism. This was not without controversy, however, in response from both the professional field and society. Nevertheless, this dimensional approach has continued to be supported through research findings. Autism prevalence within the general population is also continuing to increase, arguably contributing to a better understanding as well. However, as mentioned (and like many mental health diagnoses), a variety of stigmas surrounding autism still exist today.
Some of these stigmas include perspectives such as women cannot be on the spectrum, autistic individuals lack empathy and/emotions, autistic individuals are not capable of functioning within society, ect. These misunderstandings exist not only within society, but to some extent the professional field. The unfortunate reality is that this has led to many being overlooked for diagnoses, not only assigned female at birth individuals, but also those belonging to otherwise marginalized populations, particularly ethnically. Nevertheless, a more inclusive understanding of the spectrum is beginning to emerge in conjunction with increased recognition and discussions surrounding intersectionality. Autistic individuals are becoming increasingly recognized when speaking for themselves and the needs of others on the spectrum.
One example of this in academic literature is a study published in 2012, in unison with the social model of disability, introducing the “Double Empathy Problem”. This theory was proposed by Dr. Damian Milton, an autistic researcher, and has continued to gain popularity over the past decade. In the article Milton explores how the definitions of autism, and only thinking of it as a social deficit disorder, do not accurately encompass the problems autistic individuals experience. Instead, he proposes that problems in communication arise with mismatched neurotypes - as in between autistic and allistic (non-autistic) people. In essence, autistic individuals do not experience such communication difficulties when interacting with each other. To fairly credit, however, Milton is not the only one to have proposed this theory. Autistic activists such as Jim Sinclair have been arguing similar claims from an approach similar to the social model since the 90’s, unfortunately never seeming to receive the same level of recognition and response to instances of misconception such as Wakefield.
Despite ongoing controversies and misunderstanding surrounding autism, with the voices of actual autistic individuals, there has arguably never been a more optimistic future direction when it comes to understanding and supporting autism. Cultural attitudes today are far more tolerant towards people on the spectrum than in any previous era. However, mere tolerance proves a limited understanding; the acceptance that is needed will require support from the greater autism community, such as parents, a coordinated professional field, and education of the general public. Together we can continue to educate others about the spectrum, and work to establish an inclusive society for autistic individuals.
The intent of this article is to accurately outline the history of how the term autism is conceptualized and used in the present day. This is a complex and sensitive topic to approach, but a necessary one to unravel if future understanding is to improve
This article is subject to change with further information, and we welcome feedback from the community with this ongoing process.
The Autism Resources Team