History of autism

History of autism
The history of autism spans over a century, autism has been subject to varying treatments, being pathologized or being viewed as a beneficial part of human neurodiversity. The understanding of autism has been shaped by cultural, scientific, and societal factors, and its perception and treatment change over time as scientific understanding of autism develops.
The term autism was first introduced by Eugen Bleuler in his description of schizophrenia in 1911. The diagnosis of schizophrenia was broader than its modern equivalent: autistic children were said to have childhood schizophrenia. The earliest research that focused on children who would today be considered autistic was conducted by Grunya Sukhareva starting in the 1920s. In the 1930s and 1940s, Hans Asperger and Leo Kanner described two related syndromes, later termed infantile autism and Asperger syndrome. Kanner thought that the condition he had described might be distinct from schizophrenia, and in the following decades, research into what would become known as autism accelerated. Formally, however, autistic children continued to be diagnosed under various terms related to schizophrenia in both the DSM and ICD, but by the early 1970s, it had become more widely recognized that autism and schizophrenia were in fact distinct psychiatric conditions, and in 1980, this was formalized for the first time with new diagnostic categories in the DSM-III. Asperger syndrome was introduced to the DSM as a formal diagnosis in 1994, but in 2013, Asperger syndrome and infantile autism were reunified into a single diagnostic category, autism spectrum disorder (ASD).
Autistic individuals bypass nonverbal cues and emotional sharing that they find difficult to deal with. The development of the web has given them a way to form online communities and work remotely. Societal and cultural aspects of autism have developed: some in the community seek a cure, while others believe that autism is simply another way of being.
Although the rise of parent organizations, self-advocacy, and the destigmatization of childhood ASD have affected how ASD is viewed, Autistic individuals and parents continue to feel social stigma in situations where their child's autistic behavior is perceived negatively, and many primary care physicians and medical specialists express beliefs consistent with outdated autism research.
The discussion of autism has brought about much controversy. Without researchers being able to meet a consensus on the varying forms of condition, there was for a time a lack of research being conducted on the disorder. Discussing the syndrome and its complexity frustrated researchers. Controversies have surrounded various claims regarding the etiology of autism.
Autism before the term "autism" (until 1908)
Autistic people before autism
A few examples of people now understood to be autistic were described long before autism was named. The Table Talk of Martin Luther, compiled by his notetaker, Mathesius, contains the story of a 12-year-old boy who may have been severely autistic. The earliest well-documented case of autism is that of Hugh Blair of Borgue, as detailed in a 1747 court case in which his brother successfully petitioned to annul Blair's marriage to gain Blair's inheritance.
Henry Cavendish was a prolific natural philosopher, first published in 1766. During his life, Cavendish was considered eccentric and his behavior was described as "peculiarly shy" by contemporaries. When researching Cavendish as a subject for a 2001 article in the journal Neurology, neurologist Oliver Sacks determined that evidence for an Asperger's diagnosis was "almost overwhelming".
The Wild Boy of Aveyron, a feral child found in 1798, showed several signs of autism. He was non-verbal during his teenage years, and his case was widely popular among society for its time. Such cases brought awareness to autism, and more research was conducted on the natural dimensions of human behavior. The medical student Jean Itard treated him with a behavioral program designed to help him form social attachments and to induce speech via imitation.
Early descriptions of autistic symptoms
In 1877, British doctor John Down used the term developmental retardation to describe conditions including what would be considered autism today.
Also in 1877, German doctor Adolf Kussmaul defined the condition aphasia voluntaria - when people choose not to speak.
German psychiatrist Hermann Emminghaus wrote Allgemeine Psychopathologie zur Einführung in das Studium der Geistesstörungen (General Psychopathology as an Introduction to the Study of Mental Disorders) in 1878. Using a very similar typology he later wrote the first textbook on child psychiatry, Die psychischen Störungen des Kindesalters (The Psychic Disturbances of Childhood) in 1887. These were both very influential on the categorisation of mental conditions. While autistic people could fit into certain categories, there was no category that aligned closely with autism.
In 1887, John Down gave a lecture which describes idiots savants, people whose mental abilities were generally poor, but who had strong abilities in a particular area. He notes that "In none of the cases of "idiot savant" have I been able to trace any history of a like faculty in the parents or in the brothers and sisters..."
French psychiatrist Pierre Janet published the book Lés Obsessions et la Psychasthénie (The obsessions and psychasthenia) in 1903. It included the newly defined condition of psychasthenia, which became a prototype of Carl Jung's later introverted personality type, and was believed by Grunya Sukhareva to be a component of schizoid psychopathy in childhood.
Dementia praecox and related disorders
The term dementia praecox (premature dementia) was first used by German psychiatrist Heinrich Schüle in 1880, and also by 1891 by Arnold Pick, a Czech professor of psychiatry at Charles University in Prague.
Scottish psychiatrist Thomas Clouston in his 1883 book Clinical Lectures on Mental Diseases, described a new condition he called psychoneurosis. His description covered what is today considered the schizophrenia and autism spectrums - what others had considered "dementia praecox".
The term "dementia praecox" was greatly popularised in 1899 through the sixth edition of German Psychiatrist Emil Kraepelin's book Psychiatrie. Ein Lehrbuch für Studirende und Aerzte (Psychiatry. A text-book for students and physicians). This condition was defined very broadly by today's standards. The primary disturbance in dementia praecox was seen to be a disruption in cognitive or mental functioning in attention, memory, and goal-directed behaviour. Autistic people seen to have these attributes were diagnosed with this condition.
Italian psychiatrist Sante De Sanctis briefly mentioned a condition in a 1906 paper he called dementia praecocissima (very premature dementia), which was a form of dementia praecox that started very early in people's lives. He wrote about it in more detail in a 1908 paper. It was a very broadly defined condition he considered "very similar to the hebephrenic or catatonic symptom complex of puberty and adolescence."
Austrian educator Theodor Heller defined a condition called dementia infantilis (infantile dementia) in 1908. This condition would go on to be called Heller's syndrome and childhood disintegrative disorder. The DSM currently considers it part of autism spectrum disorder. It is a rare genetic condition.
Autism as a symptom of schizophrenia (1908–1924)
Eugen Bleuler
Eugen Bleuler was a Swiss psychiatrist who was the director of the Burghölzli mental hospital, which was associated with the University of Zurich.
In April 1908 he gave a lecture explaining that dementia praecox was very different to other forms of dementia. He proposed that it be given the unique name schizophrenia - a split mind. The term would be increasingly adopted over the next fifty years.
What is now known as "schizophrenia" is different from what Bleuler described. He included what is today considered as autism, schizoid personality disorder and various schizophrenia spectrum disorders in his definition.
The Neo-Latin word autismus (English translation autism) was coined by Bleuler in July 1910. He first used it in print to describe a symptom of schizophrenia in the scientific paper "Zur Theorie des schizophrenen Negativismus" (On the theory of schizophrenic negativism). He derived autismus from the , and used it to mean morbid self-admiration, referring to "autistic withdrawal of the patient to his fantasies, against which any influence from outside becomes an intolerable disturbance".
Bleuler created the term in reference to Sigmund Freud's term autoerotismus, shortening the latter term because he did not believe sexuality to be critical in the etiology of autistic symptoms. He characterized the autistic patient as one who "wants to shut himself off from reality". Autistic people, then, are those "most severe schizophrenics, who no longer have any intercourse at all, live in a world of their own".
Bleuler believed that the idiosyncratic behaviours of people with schizophrenia displaying autistic behaviour were due to them engaging with personal fantasy rather than with the world as it is. He believed they drew on an early childhood mental state that was unable to form theory of mind.
August Hoch: the shut-in personality
In two papers first publicly presented in November 1908 and May 1910, and published in 1909 and 1910 respectively, Swiss-American psychiatrist August Hoch of the New York State Psychiatric Institute defined the concept of the shut-in personality. It was characterised by reticence, seclusiveness, shyness and a preference for living in fantasy worlds, among other things. Hoch also said they had "a poorly balanced sexual instinct [and] strikingly fruitless love affairs". This personality was identified because a high proportion of patients with dementia praecox had shut-in behaviour before more serious symptoms appeared.
Children's rights
In 1913, the Mental Deficiency Act was passed in England and Wales, ensuring institutional care for all children identified as "mental defectives".
Gannushkin and Kraepelin
Both Russian psychiatrist Pyotr Gannushkin's 1914 paper "The state of the question of the schizophrenic constitution", and the verschrobene (eccentric) type of the eighth edition of Emil Kraepelin's psychiatry textbook (1915), detailed character types that would later be considered schizoid by Grunya Sukhareva.
Kraepelin writes of an as-of-yet poorly understood group of patients who may be intellectually well-endowed, yet are "absent-minded, forgetful, and show fluctuations in their intellectual capacity." They are eccentric in the sense that they tend to hold "extravagant and unworldly ideas," have a rambling or confused mode of expression, and tend to not to adjust themselves to others' experiences and instead "occupy themselves with completely hopeless and out-of-the-way plans".
Introduction of the term schizoid
The term schizoid began to be used just before 1920. It was used to describe people who had symptoms similar to "schizophrenia", but were not as pronounced.
German psychiatrist of the University of Tübingen, Ernst Kretschmer's 1921 paper "Körperbau und Charakter" was expanded in 1922. This expanded version was published as the book Physique and Character in English in 1925, and used the terms schizoid and schizothmes (the latter being like schizoid, but more neurotypical). He included the schizothmic artistic temperament as one of two varieties of genius.
In 1924, Bleuler said schizoid people were: At this time Bleuler also believed that everyone had a schizoid element, writing "Every man then has one syntonic [in harmony with one's environment] and one schizoid component, and through closer observation one can determine its force and direction".
In 1925, Sante De Sanctis published another paper about "dementia praecocissima". It had some overlap with Heller's syndrome.
Carl Jung's Personality Types and introversion
In September 1909, Swiss psychiatrist Carl Jung used the term introverted in a lecture at Clark University. A transcript of this lecture was then published with two others in a journal in 1910, the first time the term appeared in print. In the lecture he mentions that love that is "introverted", "is turned inward into the subject and there produces increased imaginative activity". Jung had earlier worked under Bleuler at Burghölzli.
Carl Jung's 1921 book Psychologische Typen was published as Personality Types in English in 1923. It described the "introverted" in detail for the first time. (Various new editions were published until 1949). Jung writes:
A more concise definition of the introverted type was given by Jung in February 1936, in his paper "Psychologische Typologie" (Psychological Types). It included:
Moritz Tramer
In 1924, Austrian-Swiss psychiatrist Moritz Tramer published the paper "Einseitig Talentierte und Begabte Schwachsinnige" (Singularly talented and gifted mental defectives). It described idiot savants. Leo Kanner would later claim Tramer's autism work as an antecedent of his own.
Pioneering research (1925–1949)
Grunya Sukhareva
Soviet child psychiatrist Grunya Sukhareva (Груня Сухарева) was the first person to comprehensively define what is now considered autism. She was born in Kyiv to a Jewish family. and between 1917 and 1921 worked in a psychiatric hospital in Kyiv. In 1921, she founded a school for children with psychological problems at the Psychoneurological Department for Children in Moscow, and worked there for some time. She was supervised by Mikhail Gurevich, who had previously worked under Emil Kraepelin.
In 1925 she published a paper containing six case studies and a detailed description of schizoid personality disorder in children, titled "Шизоидные псиxопатии в детском возрасте" (Schizoid Psychopathies in Childhood). This was republished in German in 1926, as "Die schizoiden Psychopathien im Kindesalter" (The Schizoid Psychopathies in Childhood). Her definition aligned well with that for ASD in the DSM-5.
Her description of the condition included the following:
An odd type of thinking, characterized by a tendency towards abstraction and schematization, as well as by rationalization and absurd rumination.
An autistic attitude, understood as difficulty adapting to peers and a tendency to keep apart from them.
A flatness and superficiality of emotions, combined with Kretschmer's psychasthenic mood and also involving a mixture of insensitive and oversensitive elements.
Sukhareva concluded that "there is a group of personality disorders whose clinical picture shares certain features with schizophrenia, but which yet differs profoundly from schizophrenia in terms of its pathogenesis". Speculating about the etiology of the condition, she attributed these to "an inborn deficiency of those systems which are also affected in schizophrenia".
Sukhareva followed this paper with one the next year that focused on girls with the condition. She found that there were four main sex-related differences. (New Zealand translator Charlotte Simmonds translated this paper into English in 2020.)
While Sukhareva's writings would be read and referenced by American child psychology researchers like Louise Despert, Charles Bradley, and Leo Kanner in the 1930s and 40s, her work was subsequently largely unknown in the Anglosphere and Western Europe.
Sukhareva would not become well known in the West until much later: In September 1996, British child psychiatrist Sula Wolff published her translation of Grunya Sukhareva's 1925 paper, starting the process of increasing awareness of Sukhareva's work in the West.
In 1930, Sukhareva published the paper K probleme struktury i dinamiki detskikh konstitutsionnykh psikhopatiĭ (shizoidnye formy) (On the problem of the structure and dynamics of children's constitutional psychopathy (schizoid form)). It was translated into English by William New and Hristo Kyuchukov in 2022. She notes:Between 1932 and 1936, Sukhareva went on to publish several papers about childhood schizophrenia. In her December 1932 paper Uber den Verlauf der Schizophrenien im Kindesalter (On the course of schizophrenia in childhood), she identifies "lack of unification of the psychic functions" as an early symptom of childhood schizophrenia, noting that even "the psychiatric untrained educator" finds these children "striking and odd". She further notes, that even from early childhood, these children showed "lack of adaptability to life in the collective, a certain autism and unreliability".
In 1939, Sukhareva published the three book collection Клинические лекции по психиатрии детского возраста, (Clinical lectures on child psychiatry). The second volume included her findings about schizoid/schizophrenic children. New editions were published in 1959 and 1965.
Hans Asperger
The Austrian psychiatrist Hans Asperger was born in Vienna in 1906.
In 1929, German psychiatrist Erich Rudolf Jaensch (of the University of Marburg) published his book Grundformen menschlichen Seins (Basic forms of human existence). Asperger would later say his autism thinking was influenced by its explanation of schizothyms (a mild schizoid personality type).
In May 1931, Asperger joined the Vienna University's Children's Clinic, and the following year had joined its department of curative education. He learnt from those already working there, including the Austrians psychiatrist , psychologist Anni Weiss, and nurse Viktorine Zak. In 1935, Asperger went on to become the head of the department.
In April 1935, Anni Weiss published the paper "Qualitative intelligence testing as a means of diagnosis in the examination of psychopathic children", which includes a case study about an autistic boy. In August that year, the Jewish Weiss migrated from Europe to the United States. She would go on to work at Johns Hopkins Hospital in Baltimore.
George Frankl was working at the clinic long before Asperger, and had taught Asperger much about child psychiatry. Already in 1934, Frankl had published the paper "Befehlen und Gehorchen" (Command and Obey), which identified a group of children with particular language difficulties that some have subsequently considered autistic. As a Jew, Frankl was in danger from his country's Nazi regime. So he left Vienna in 1937 and migrated to the United States in November that year. He went to work with his friend Leo Kanner at John Hopkins Hospital.
Asperger used the terms autistic psychopath and autism in a 3 October 1938 lecture to describe a pattern he had seen in his patients and elsewhere. The lecture was published later that year as Das Psychisch Abnormale Kind (The Mentally Abnormal Child). The lecture included two case studies, and analysis. It instructed its predominantly Viennese listeners and readers that people who are a bit strange may also be very intelligent, and that knowing this will become important "when the 'Law for the Prevention of Hereditary Diseased Offspring' comes into force in our country".
Describing a particular kind of mentally abnormal child, Asperger wrote:He also spoke to the broad range of people he considered as having "autism":Hans Asperger submitted a postdoctoral habilitation thesis on the topic of autism to the University of Vienna in October 1942, which would be published with very few changes in June 1944. The paper "Die "Autistischen Psychopathen" im Kindesalter" (The "Autistic Psychopaths" in Childhood) included four cases studies and related analysis. This work offered by far the most detailed description of autism as yet published.
Asperger notes:In regards to his work's academic antecedents, Asperger frequently acknowledges Bleuler, and also:(It has been suggested that Asperger was also likely aware of Sukhareva's work.)
The particular patterns Asperger identified later became known as "Asperger syndrome", particularly those that differed from the children described by Kanner.
Despite many important English-publishing autism researchers being fluent in German, and his work being covered in some English language works, Asperger's concept of autism would be almost unknown by non-German-speaking psychological professionals until the 1970s. It would take yet longer for substantial numbers of non-German-speaking people it describes to hear about it.
Leo Kanner
Leo Kanner was born in 1894 to a Jewish family in what is Ukraine today, and what was then the Austro-Hungarian Empire. He went on to study and work in Berlin. He then immigrated to the United States in 1924.
In 1930, the first child psychiatry clinic in the United States was established at Johns Hopkins Hospital, and Kanner was appointed to run it. In 1933, Kanner became associate professor of psychiatry at Johns Hopkins University.
In May 1933, American psychiatrist Howard Potter, (assistant director of the New York State Psychiatric Institute and Hospital), published a paper titled "Schizophrenia in Children". Potter defined six diagnostic criteria for childhood schizophrenia, which Kanner would later say was important when thinking about autism:
A generalized retraction of interests from the environment.
Dereistic thinking, feeling and acting.
Disturbances of thought, manifested through blocking, symbolization, condensation, perseveration, incoherence and diminution, sometimes to the extent of mutism.
Defect in emotional rapport.
Diminution, rigidity and distortion of affect.
Alterations of behavior with either an increase of motility, leading to incessant activity, or a diminution of motility, reacting to complete immobility or bizarre behavior with a tendency to perseveration or stereotypy.
In 1934, Soviet psychiatrist Evgenia Grebelskaya-Albatz (Евгения Гребельская-Альбац) of Moscow published the paper "Zur Klinik der Schizophrenie des frühen Kindesalters" (On the clinic of early childhood schizophrenia). It divided people with childhood "schizophrenia" into two groups, those with normal intelligence, and those with lesser intelligence. Kanner would later say that she was one of the three people to identify autism before he did.
Leo Kanner published the first American textbook on child psychiatry in 1935, titled Child Psychiatry. (While many sources say he published the first English-language book of that kind, Kanner himself credits this to William Ireland).
In 1937, Swiss psychiatrist Jakob Lutz of University of Zurich published a short book reviewing the available material on childhood schizophrenia, including the work of Sukhareva, Potter, Grebelskaja-Albatz and others. It was republished in a journal later in 1937. Lutz visited Kanner's department at Johns Hopkins in early 1938. Lutz would also publish a chapter on the topic in a book that year. Kanner later acknowledged Lutz's influence on his work.
In June 1938, American psychiatrist Louise Despert of the New York State Psychiatric Institute published the paper Schizophrenia in Children. It included case studies of people that have subsequently been identified as having autism. The paper referenced two researchers, Sukhareva and Grebelskaya-Albatz. It has been suggested that this paper was a major influence on Kanner. Kanner would later also claim Despert's autism work as an antecedent of his own.
By this time, two of Hans Asperger's close colleagues, psychiatrist (and friend of Kanner) and psychologist Anni Weiss, were now working at Johns Hopkins, having fled the Nazis.
Leo Kanner visited the autistic child Donald Triplett on 27 October 1938. Kanner would later say that this was the first time he saw the pattern of autism.
In April 1941, Kanner presented a paper titled "Autistic Disturbances of Affective Contact" to a staff conference in The Henry Phipps Psychiatric Clinic in Baltimore. This would be published in April 1943. It includes case studies of eleven children and their families who have particular things in common. He does not use the term autism as the name of the children's condition.
He summarises:
Almost all the characteristics described in this paper, notably "autistic aloneness" and "insistence on sameness", are still regarded as typical of autistic spectrum disorder.
As for the cause of the condition, it states:The term Kanner's syndrome was later coined to describe the children's condition, in particular to distinguish them from the differing symptoms of Asperger's children. This syndrome has also sometimes been known as classic autism.
Kanner and Asperger's colleague George Frankl published the paper "Language and Affective Contact" in the same journal edition as Kanner's 1943 paper. It describes different kinds of speech problems children have. In particular, he identifies a group of speech-troubled children defined by having a "lack of contact with persons", which can considered to be an autistic group. Frankl's precise role in the development of the concept of autism is not clear.
In September 1944, Kanner published the paper "Early Infantile Autism", giving his newly identified condition a new name. The paper has much in common with Kanner's 1943 paper. It included only two case studies, but had a much more detailed introduction.
Kanner writes:His third paper on autism, "Irrelevant and metaphorical language in early infantile autism" was published in September 1946. He concludes, "schizophrenic 'irrelevance' is not irrelevant to the patient himself and could become relevant to the audience to the extent to which it were possible to find the clues to his private and self-contained metaphorical transfers."
He released a new edition of his textbook Child Psychiatry in 1948, which included his newly identified condition, and did much to increase knowledge of it.
Kanner published a fourth autism paper in July 1949, entitled "Problems of nosology and psychodynamics of early infantile autism". The first part aims to reinforce the separateness of early infantile autism from other conditions accepted by the medical community. He notes "Early infantile autism bears no resemblance to Heller's disease". He says it is however the same condition earlier identified by three women, "Ssucharewa [a German spelling of Sukhareva], Grebelskaya-Albatz, and Despert."
The paper also says much about the personality type of the parents of autistic children, including:He also notes that the parents were typically "reared sternly in emotional refrigerators", and that "the parents did not seem to know what to do with the children when they had them. They lacked the warmth which the babies needed."
Other research
German child psychiatrist August Homberger released the book Vorlesungen über Psychopathologie des Kindesalters (Lectures on childhood psychopathology) in 1926, which included a chapter called "Die Schizophrenie" (The schizophrenia). Charles Bradley would later quote from it extensively.
Russian-French psychiatrist Eugène Minkowski submitted a thesis in 1926, "La notion de perte de contact avec la réalité et ses applications en psychopathologie" (The Notion of Loss of Contact with Reality and its Applications in Psychopathology). He thought that autism was the patient's loss of contact with reality, and was the core component of "schizophrenia". He thought autism was of two types, "rich" (full of fantasy/psychosis) and "poor" (with few thoughts and feelings). Contrary to Bleuer, he thought that the vast majority of autistic cases were of the "poor" type.
R. Niedenthal published the paper "Schizophrenia in childhood" in 1932. It was devoted to defining the symptoms of childhood schizophrenia.
In 1934, Moritz Tramer published the paper "Elktiver Mutismus bei Kindern" (Elective Mutism in Children), coining the term elective mutism.
During this period, the term autism came to be used quite widely, with a variety of related meanings.
In December 1937, British psychiatrist Mildred Creak of Maudsley Hospital presented a paper titled "Psychoses in Children". One part of it identified a group of five children that might today be considered autistic. The paper was published in March 1938.
In 1939 and 1940, Dutch psychiatrist Alfons Chorus of Nijmegen's Pedological Institute published a pair of papers describing children that were autists and schizoid, which today would be considered autistic. In late 1938 or early 1939, the Institute created a category for its child students called "autists", representing those who were particularly self-centred. (The institute's work with the autistic would later be explained by senior Sister and psychologist Ida Frye in her doctoral desertion in 1968).
In November 1940, husband-and-wife psychiatrists the American Lauretta Bender and Austrian-American Paul Schilder of New York University and Bellevue Hospital published the paper "Impulsions: A specific disorder of behaviour of children". This paper describes in detail children with what would earlier be considered monomania, and later be considered "special interests":American psychiatrist Charles Bradley of the Emma Pendleton Bradley Home, published the book Schizophrenia in Childhood in March 1941, which described in extensive detail what is today considered childhood autism. He cited dozens of other early researchers on the topic, predominantly Lutz, Sukhareva, Potter and Homberger.
In 1942, Lauretta Bender described the condition of childhood schizophrenia as a "definite syndrome", a "pathology at every level and in every field of integration within the functioning of the central nervous system".
American Academy of Speech Correction
The American Academy of Speech Correction (AASC) was founded in 1925, bringing together people working to correct serious communication problems some people had. This included some autistic people. Speech correctionists later became known as "speech therapists" and "speech pathologists", amongst other terms. The AASC changed its name to the American Speech–Language–Hearing Association in 1978. In 2022, the US Centers for Disease Control and Prevention (CDC) noted that "The most common developmental therapy for people with ASD is Speech and Language Therapy."
Similar bodies later formed in other parts of the world, including the UK's College of Speech Therapists (now Royal College of Speech and Language Therapists) in 1945, the Australian College of Speech Therapists (now Speech Pathology Australia) in 1949 and Speech-Language & Audiology Canada (SAC).
Fragile X syndrome
In July 1943, the British neurologist James Martin and geneticist Julia Bell described a pedigree of X-linked intellectual disability. This would later be called Fragile X syndrome, and is now considered one of the genetic causes of autism.
ICD-6
On 7 April 1948, the newly formed United Nations established the World Health Organization (WHO). One of its first tasks was to create a global standard list of all health conditions, which was approved by an international conference at the end of April. The WHO adopted and greatly expanded an earlier list of fatal conditions, the ILCD-5. The first International Classification of Diseases (ICD-6) soon became widely used in Europe and elsewhere.
It included "primary childhood behaviour disorders" (324), which was used to categorise all children with what was considered disordered behaviour. There was also the condition of "specific learning defects" (326.0). One of its "disorders of character, behaviour, and intelligence" was the "pathological personality" of "schizoid personality" (320.0). Various categories of schizophrenia (300) were additionally represented, though not specifically "childhood" schizophrenia. (The DSM-II would later explicitly state that its concept of childhood schizophrenia had no ICD equivalent).
The ICD would not substantially change its representation of autism-related conditions until the ICD-9 in 1978.
Increasing awareness (1950–1979)
Starting in the 1950s, awareness of "autism" as a distinct condition begins to spread to psychiatrists and the wider culture. Parents of autistic children began to group together around the condition, and advocate for their children and themselves. Applied Behavioral Analysis (ABA) became adopted as a method of treatment.
The League for Emotionally Disturbed Children
The League for Emotionally Disturbed Children was founded in New York in 1950 by 20 parents of emotionally disturbed children, including doctor and researcher Jacques May. The group established the League School in Brooklyn in 1953. Enrolment was limited to children diagnosed with "childhood schizophrenia". The school helped establish a new method of teaching, led by teacher Carl Fenichel and assisted by psychiatrists Alfred Freedman and Zelda Klapper. In 1955, it changed its name to the National Organization for Mentally Ill Children. Leo Kanner noted in 1956 that the organisation had sponsored research that was "attempting to uncover metabolic and electrophysiologic abnormalities" in autistic children. In 1966, Fenichel established the League School of Boston.
Refrigerator mother theory
In the early 1950s, the refrigerator mother theory emerged as an accepted explanation for Kanner's early infantile autism. The hypothesis was based on the idea that autistic behaviors stem from the emotional frigidity, lack of warmth, and cold, distant, rejecting demeanor of a child's mother. Parents of children with an ASD experienced blame, guilt and self-doubt, especially as the theory was embraced by the medical establishment and went largely unchallenged into the mid-1960s. (While an inspiration for it, Leo Kanner himself eventually rejected the theory.)
Austrian-British psychologist Anna Freud and British psychologist Sophie Dann published a paper in 1951 that found that the extreme conditions of deprivation of affection of the Nazi concentration camps did not induce autistic pathology in children. This was later used as an argument against the refrigerator mother theory.
DSM-I
The first edition of the American Psychiatric Association's Diagnostic and Statistical Manual of Mental Disorders (DSM) was released in 1952. The DSM was created to give each of America's mental disorders a clear definition. Two of the conditions it defined included reference to Bleuler's understanding of "autism" - the symptom of keeping-to-oneself. Each was named primarily using another of Bleuler's terms, and defined with a paragraph.
One was "Schizophrenic reaction, childhood type" (000-x28), used in cases of "psychotic reactions", including those manifesting primarily autism. This diagnosis was used in cases where there were intellectual disturbances, repetitive behavior, or a retreat from reality. The other was "Schizoid personality" (000-x42), which was characterized by avoidance of close relations with others, inability to express ordinary aggressive feelings, and autistic thinking.
Kanner and Eisenberg's 1956-57 work
In February 1956, American psychiatrist Leon Eisenberg published the paper "The Autistic Child in Adolescence", which compared the childhood and adolescence of 63 autistic people. He found that almost one third had achieved at least a moderate social adjustment over the period, predominantly those who had possessed "meaningful language" by the age of 5. He also found that "the fundamental feature [of autism] is a disturbance in social perception."
In July that year, Kanner and fellow Johns Hopkins researcher Eisenberg published the paper "Early infantile autism, 1943-1955". Providing Kanner's most concise definition of the condition yet published, the paper says:Supporting the refrigerator mother hypothesis, the paper notes: "The emotional frigidity in the typical autistic family suggests a dynamic experiential factor in the genesis of the disorder in the child."
Kanner released the third edition of his textbook Child Psychiatry in 1957. It included an extensive chapter on "early infantile autism", which he categorised as a type of schizophrenia. Regarding the treatment of child schizophrenia as a whole, he wrote: "Whenever possible, frequent sessions with a psychiatrist may enhance the child's ability to form relationships and wean him away from the temptation to schizophrenic withdrawal."
Kanner published a number of other papers about autism in the 1950s and 60s.
Mildred Creak's nine point definition
Until 1961, autistic children in the UK were often institutionalised from a young age. Poor disease control in these institutions often led to a quick death. At this time, the British government sought to discover exactly how many psychotic children there were in the UK. They commissioned Mildred Creak of Great Ormond Street Hospital to lead a group to define the symptoms of childhood psychosis/schizophrenia, and the group completed their work the same year. They came up with a nine-point definition that soon became widely used in that country, and in time would form the definition of the condition used in most of the world.
The nine points were more detailed than Sukhareva's similar definition. They lacked the earlier definition's mention of OCD and clumsiness, and added the inclusion of anxiety. A major difference came in Creak's ninth point: "A background of serious retardation in which islets of normal, near normal, or exceptional intellectual function or skill may appear."
As the new definition took off, the autistic condition began to be seen as involving a lack of fantasy rather than an excess of it.
In the United Kingdom
British teacher Sybil Elgar began a school for autistic children in the basement of her London home in 1962. Later that year Elgar, Lorna Wing and others established the UK's Society for Autistic Children. (It became known as the National Autistic Society in 1982.)
The Society proposed the "puzzle piece" as a symbol for autism in 1963, because it reflected their view of autism as a "puzzling condition".
In 1965, the group set up The Society School for Autistic Children, which was later named after Sybil Elgar. As of 2023, the society operates seven schools across England.
Representative organisation Scottish Autism began in 1968, and continues independently today. (Autism Northern Ireland would follow in 1991.)
In the United States
American psychologist Bernard Rimland published an article in 1959 in Scientific American, "Joey the Mechanical Boy", about a 9-year-old with autism. This increased public awareness of the condition in the United States.
Rosemary Kennedy, sister of US President John F Kennedy, was autistic. Her sister Eunice Kennedy Shriver made the public aware of this through an article in the New York Post in September 1962. Rosemary's treatment with brain surgery severely impacted her.
The US Community Mental Health Act (CMHA) of 1963 prompted the closure of most of the country's residential institutions for the mentally unwell. The intent was that as many people as possible would be enabled to live freely in homes without full time professional supervision, but could draw on support from community mental health centres. The introduction of Medicaid in 1965 increased the rate of institutional closure.
In 1964, Bernard Rimland published the book Infantile Autism: The Syndrome and Its Implications for a Neural Theory of Behavior, which refuted the refrigerator theory. Instead, Rimland suggested, autism was a result of biochemical defects "triggered by environmental assaults". It included a foreword by Leo Kanner. The book challenged the medical establishment's perceptions of autism. Rimland's message resonated with parents, who wanted to share their stories with him and ask for advice. (The book also includes a reference to "Asperger Syndrome".)
Philip K. Dick published the science fiction book Martian Time-Slip in 1964, which features an autistic boy with special powers.
In February 1965, American TV aired an episode of the series Directions entitled "Conall", the story of a boy with autism told by his family.
In May that year, Life magazine published an article on the work led by Norwegian-American behaviourist psychologist Ivar Lovaas at UCLA's Young Autism Project. "Screams, Slaps and Love" showed how the adults working with autistic children hit them as part of their training.
Both this TV episode and magazine article led to further awareness of the condition in the United States. Later in 1965, this newfound awareness coalesced as Rimland, Lovaas, nurse Ruth C. Sullivan and others founded the National Society for Autistic Children (NSAC). Leo Kanner and Carl Fenichel soon joined its Professional Advisory Board.
Austrian-American psychologist Bruno Bettelheim at the University of Chicago countered Rimland's assertions about the causes of autism in his 1967 book Empty Fortress: Infantile Autism and the Birth of the Self. It greatly popularised the refrigerator theory. Bettelheim subsequently appeared multiple times on The Dick Cavett Show in the 70s to discuss theories of autism and psychoanalysis. (Refrigerator theory has since been refuted in the scientific literature, including a 2015 systematic review which showed absolutely no association between caregiver interaction and language outcomes in ASD patients.)
Another notable book of 1967 was The Siege: The First Eight Years of an Autistic Child by American teacher Clara Claiborne Park. It told the story of Clara's daughter and Clara's efforts to help her. (An updated version was released in 1982).
Bernard Rimland left his central role at the NSAC in 1967, founding the Autism Research Institute. However, he remained attached to the NSAC.
Starting in the late 1960s, "autism" started to be considered as a separate syndrome from "schizophrenia", just as Bleuler had separated schizophrenia from dementia.
The Rehabilitation Act of 1973 stated, “No otherwise qualified handicapped individual in the United States, shall solely by reason of his handicap, be subject to discrimination under any program or activity receiving federal financial assistance.”
The Education for All Handicapped Children Act (EHA) was passed in November 1975, after a series of related Supreme Court decisions. In 1970, US schools educated only one in five children with disabilities. Many states had laws excluding emotionally disturbed and intellectual disabled children from public education. The EHA guaranteed each disabled child a free and appropriate public education. (The act became the Individuals with Disabilities Education Act (IDEA) in 1990).
Sensory processing disorder, hyperlexia, and alexithymia
Sensory processing disorder is a condition in which multisensory input is not adequately processed in order to provide appropriate responses to the demands of the environment. The concept was developed by American occupational therapist Anna Jean Ayres in the 1960s. The disorder continues to be recognised by some major occupational therapy bodies. Studies by the STAR Institute suggest that at least three-quarters of autistic children have significant symptoms of the condition.
Hyperlexia is when a child can read at an early age. This can be a symptom of autism, particularly when their reading ability is much better than their speaking ability. The term was coined by Norman E. Silberberg and Margaret C. Silberberg in 1967.
The term alexithymia was conceptualised by American psychiatrists Peter Sifneos and John Case Nemiah in 1973. It refers to people having difficulties in understanding the emotions experienced by themselves or others. This is common in people with autism, but is not always the case.
During the 1970s, Anna Jean Ayres developed the sensory integration theory, which proposes that sensory-processing is linked to emotional regulation, learning, behavior, and participation in daily life. Sensory integration is the process of organizing sensations from the body and from environmental stimuli.
In conjunction with her theory, Ayres developed sensory integration therapy (SIT) to help children with sensory-processing difficulties. America's CDC notes that this therapy is used with autistic people to "help improve responses to sensory input that may be restrictive or overwhelming."
Asperger's 1968 paper
In April 1968, Hans Asperger wrote about the similarities and differences of his and Kanner's concepts of autism in the paper "Zur Differentialdiagnose des kindlichen Autismus" (On the differential diagnosis of childhood autism), noting:Highlighting his broad use of the term autism, he also remarked:Leo Kanner republished a copy of his 1934 paper in the same journal edition.
DSM-II
In the DSM-II, published in 1968, the concept of autism was used to describe the symptoms of three different conditions: childhood schizophrenia (295.8), withdrawing reaction of childhood (308.1), and schizoid personality (301.2). Compared to the DSM-I, the description of childhood schizophrenia was more detailed.
Applied behavior analysis and related techniques
While serving as an assistant professor of psychology at Indiana University from 1957 to 1962, Charles Ferster employed errorless learning to instruct young autistic children how to speak. This was an early example of what would later be known as applied behaviour analysis. From the late 1950s, Ferster and others used the new science of behaviorism to teach people with autism and other mental conditions. This led researchers at the University of Kansas to start the Journal of Applied Behavior Analysis in the northern spring of 1968, establishing the concept of applied behavior analysis (ABA).
A concise definition of the concept, still used today, was given in the first issue of the journal. ABA soon came to be used extensively with autistic children in the United States and elsewhere. In the US, ABA became the only autism-specific teaching method insurance companies would typically pay for, thus most autism-specialist teachers there became ABA trained and qualified. (Two major American professional associations would later be founded for ABA practitioners.)
The Behavior Research Institute was founded by Matthew Israel in the United States in 1971. It would later become known as the Judge Rosenberg Educational Centre. Six residents have died of preventable causes at the center since it opened. Various bodies have accused the centre of repeatedly torturing autistic people in the name of ABA. Matthew Israel invented the graduated electronic decelerator to provide electric shocks as punishment for residents. This includes shocks nine times as powerful as a cattle prod.
The MidWestern Association for Behavior Analysis was founded in the United States in 1974. It later became the Association for Behavior Analysis International (ABAI).
Kanner's work in the 1970s
The Journal of Autism and Childhood Schizophrenia was established in January 1971, with Leo Kanner as the editor. This was the first scientific journal devoted to autism. Kanner wrote a paper called "Childhood psychosis: A historical overview" for the first issue. It acknowledges the work of a broader range of people than Kanner had previously, but not that of Asperger or Frankl; according to Dirk van Krevelen, Kanner and Asperger were mutually unaware of each other's work.
Another paper in the first edition however compares Kanner's syndrome (early infantile autism) with Asperger's syndrome (autistic psychosis). It also differentiates the two conditions through a list of seven differences. For the second edition, Kanner traced the eleven children in his 1943 paper, and determined how they had grown up. The results were published in Follow-up Study of Eleven Autistic Children Originally Reported in 1943, but the results were inconclusive.
Kanner released the fourth and final edition of his textbook Child Psychiatry in 1972.
He edited the book Childhood Psychosis: Initial Studies and New Insights in 1973, and wrote three of its chapters. It reviewed 30 years of research into early infantile autism and childhood schizophrenia. In it he bemoaned the diagnosing of intellectually disabled children with a few autistic features as singularly having autism.
The "First International Leo Kanner Colloquium on Child Development, Deviations, and Treatment" was held in October 1973. The papers tabled were published as the popular academic book Psychopathology and child development: research and treatment in April 1976. Many of the papers were about autism. It was edited by Eric Schopler and American psychiatrist Robert J. Reichler. Eric Schopler would become the second editor of the Journal of Autism and Childhood Schizophrenia in 1974, staying in that role until 1997.
ICD-9
The international medical condition classification system, the ICD, greatly changed the way it categorised autism-related conditions in 1978, with the release of the ICD-9. "Infantile autism" (299.0) was now recognised as a condition, with separate sub-categories for it having a "current or active state" or "residual state". Its definition of this condition was based on the criteria devised by Mildred Creak for "childhood schizophrenia" in the early 1960s.
In the category of "disturbance of emotions specific to childhood and adolescence", the ICD now included "sensitivity, shyness and social withdrawal disorder" (313.2), which included the subcategories "shyness disorder of childhood", "introverted disorder of childhood" and "elective mutism". "Schizoid personality disorder" (301.2) now had two varieties, a general one, and "introverted personality".
Other scientific contributions
Dirk van Krevelen published the paper "Een geval van 'early infantil autism'" (A case of early infantile autism) in 1952. It was the first European paper about "early infantile autism". In it, van Krevelen notes that while the condition is well known by United States child psychiatrists, it is virtually unknown in Europe.
In 1952, British psychiatrist Ronald Fairbairn published the paper "Schizoid Factors in the Personality" as part of a book. (An early form of it had been given as a lecture in November 1940). It included Fairbairn's belief that the schizoid type was defined by "(1) an attitude of omnipotence, (2) an attitude of isolation and detachment and, (3) a preoccupation with inner reality", with last being by far the most important. Fairbairn believed that people became schizoid because they had been unable to get the parental love they sought when they were small children. He also saw an equivalency between being "schizoid" and "introverted".
1962 saw a number of notable scientific publications about autism published: In January, Charles Ferster and American psychiatrist Marian DeMyer published the paper "A method for the experimental analysis of the behavior of autistic children". This was possibly the first paper to show how behaviorism could be used to teach autistic students. Also in January, Dirk van Krevelen and Christine Kuipers published a paper in English regarding the work of Hans Asperger, "The psychopathology of autistic psychopathy".
Also in 1962, German psychiatrist Gerhard Bosch published the book Der Frühkindliche Autismus: Eine Klinische und Phänomenologisch-Anthropologische Untersuchung am Leitfaden der Sprache (Early Childhood Autism: A Clinical and Phenomenological-Anthropological Study Using Language as a Guide). Among other things, it briefly compared the work of Asperger and Kanner and suggested both were variants of the same condition. In 1965, Kanner said he had read this book. Bruno Bettleheim cited it substantially in his later work.
British psychiatrist John K Wing edited the first edition of Early Childhood Autism; Clinical, Educational and Social Aspects in 1966, which included chapters from both Ivar Lovaas and Lorna Wing. Later editions would contain different chapters.
British psychiatrist Michael Rutter's extensive research in the 1960s provided statistically robust evidence that the syndrome of "early infantile autism" existed. His most cited paper of the period was published in October 1968.
1970 saw the release of the English translation of Gerhard Bosch's 1962 book as Infantile autism: a clinical and phenomenological-anthropological investigation taking language as the guide. It was translated by Derek and Inge Jordan, and included an introduction from Bruno Bettelheim. The English language edition included a large appendix about Asperger and Kanner not included in the German one. It used the term Asperger's syndrome to describe the symptoms of Asperger's patients.
American psychiatrist Stella Chess conducted studies on the potential link between rubella and autism. In 1971, she found that children with congenital rubella syndrome developed autism at rates 200 times higher than the general population at the time. She followed this up with a 1977 study.
South African-British psychiatrist Israel Kolvin provided much evidence that "early infantile autism" was a very different condition to later onset schizophrenia through two studies published in 1971.
In 1975, American-British psychologist Donald Meltzer released his book Explorations in Autism: a psychoanalytic study, documenting the treatment of childhood autism following the thinking of Melanie Klein.
Hans Asperger gave a lecture in Fribourg in 1977, of which a translation in English titled "Problems of Infantile Autism" was published in 1979.
American psychiatrist Susan Folstein and British psychiatrist Micheal Rutter published a significant twin study establishing the genetic basis of autism in September 1977.
The popular academic book Language of autistic children was published in 1978, and was written by American psychiatrist Don W. Churchill.
Considering the wide difference of autistic traits in different people, British researcher Lorna Wing and Judith Gould coined the term autism spectrum in their March 1979 paper Severe impairments of social interaction and associated abnormalities in children: epidemiology and classification.
The opioid excess theory hypothesis of autism was first proposed by Estonian-American neuroscientist Jaak Panksepp in a 1979 paper.
Other treatment programmes, self-advocacy and books
American social worker, teacher and dramatist Viola Spolin released the book Improvisation for the Theater in 1963, based on her decades of experience teaching people how to more effectively communicate with each other. The book contained a series of exercises for teaching people how to understand other people's thoughts about their shared situation, and how to react to them effectively. This kicked off the theatre games set of practices, which form an important part of drama therapy. (A second edition was published in 1983, and a third in 1999.)
The University of North Carolina's TEACCH Autism Program was founded by German-American psychologist Eric Schopler in 1971, building on work started by Schopler and a colleague in 1964. It recognizes autism as a lifelong condition and does not aim to cure but to respond to autism as a culture. It uses behaviourism in a small group setting. Its methods have been adopted by many practitioners.
British researcher Lorna Wing of the Institute of Psychiatry, London published the book Autistic children - a guide for parents in 1971. Louise Despert endorsed the book, and provided its forewords.
In 1972, German-American Wolf Wolfensberger released his book Normalisation. It advocated that society should provide opportunities to people with disabilities so that they can do what people without those disabilities can do.
The popular book A child called Noah: a family journey was written about the autistic boy Noah Greenfield by his father the American playwright Josh Greenfeld, and was published in 1972. Josh Greenfield was to write two other books about Noah, and Noah's brother would write an additional one.
In 1975, Canadian speech pathologist Ayala Hanen Manolson founded The Hanen Centre. Here she developed a new program for groups of parents whose children had significant language delays, known as the "Hanen Approach." Previously, speech pathology was largely delivered by professional pathologists - this approach trained parents to provide the same guidance to children. Over decades, this approach further developed into programs such as More Than Words and Talkability.
In November 1975, two British organisations, the Union of the Physically Impaired Against Segregation and the Disability Alliance, held a discussion about the "fundamental principles of disability." The published summary of that discussion advanced a new definition of disability. "In our view, it is society which disables physically impaired people. Disability is something imposed on top of our impairments, by the way we are unnecessarily isolated and excluded from full participation in society." This sentiment later became the basis of the social model of disability, and was important in disability self-advocacy.
The home-based autism treatment program Son-Rise, was developed by American couple Barry Kaufman and Samahria Kaufman in the early 1970s. Barry published a book on the method in 1976, (Son-Rise), claiming that it cured his son of autism. An American TV movie based on the book, Son-Rise: A Miracle of Love, was released in 1979. It was influential in Brazil, and was repeatedly aired there during the 1980s. In 1990, the BBC in the UK aired a documentary about one boy's treatment using the Son-Rise program, titled I Want My Little Boy Back, as part of the series Q.E.D.: Challenging Children. An updated and expanded Son-Rise book, Son-Rise: The Miracle Continues was released in 1994.
The "developmental, individual-difference, relationship-based model" (DIR) of autism diagnosis and treatment was developed by American psychiatrist Stanley Greenspan in 1979. This was later further developed into the Floortime program.
Establishment of new organizations
In addition to new scientific and cultural developments, the period from 1950 to 1980 also saw the establishment of various new associations, foundations, and other organizations related to autism:
The first French national autism organisation, the ASITP (Association au service des inadaptés présentant des troubles de la personnalité), was founded in Paris in 1963. (Since 1990, it has been known as (FFSA)).
Kfar Tikva was established in Israel as a village for people with "cognitive, developmental and emotional disabilities" in 1964. This includes autistic people. (The similar Kishorit community opened in 1997.)
In 1964–7, Australian autistic people and their parents founded what is now Autism SA (1964), the Autistic Children's Association of New South Wales (now Aspect, 1966), Victorian Autistic Children's and Adult's Association (now Amaze, 1967), Autistic Children's Association of Queensland (now Autism Queensland, 1967), and what is now the Autism Association of Western Australia (1967). These organisations continue today. (Later, Autism Tasmania (1992) and Autism NT (2002) would be founded.)
In Brazil, the Comunidade Terapêutica Leo Kanner (Leo Kanner Therapeutic Community) was founded in Porto Alegre in 1965.
40 parents of autistic children met in Tokyo in December 1966. In February 1967, they and others formed the Association of Autistic Children's Parents. A national body was established in 1968. In time, this would become (日本自閉症協会).
In 1970, NSAC launched an ongoing national autism awareness campaign in the US. In 1972, it started the first National Autistic Children's week, which later evolved into Autism Awareness Month.
In Italy, (AIABA, The Italian Association for Assistance to Autistic Children) was founded by parents of children with autism in 1970.
In Germany, what is now (Autism Germany) was founded in 1970.
In Canada's most populous province, the Ontario Society for Autistic Children was founded by parents in 1973. (After a number of name changes, it became Autism Ontario in 2006.)
Division 33 of the American Psychological Association was established in 1973, bringing together American psychiatrists interested in "Mental Retardation and Developmental Disabilities", including autism. As of 2023, the group covers "Intellectual and Developmental Disabilities/Autism Spectrum Disorder" (IDD/ASD).
The Israeli Society for Children and Adults with Autism (ALUT) was founded in 1974. As of 2023 it has over 2,500 employees, providing services to over 15,000 families.
In January 1975, Autismus Deutsche Schweiz (Autism German Switzerland) began in German-speaking Switzerland. (This was followed with an allied body in French-speaking Switzerland in 1985, and one in Italian-speaking Switzerland in 1989. The three groups now form a confederation called Autism Switzerland.)
Autism Society Canada was established in 1976.
Autism support group APAFAC was founded in Catalonia in 1976. It was joined by Aspanaes in Galacia in 1979, and similar bodies in other parts of Spain after that.
The (NVA) (Dutch Association for Autism) was founded in 1978 by parents of children with autism.
The Sensory Processing Disorder Foundation was founded in America in 1979 by occupational therapist Lucy Jane Miller. It is now known as the STAR Institute.
Formal recognition (1980–1993)
The DSM-III, the third version of the DSM, was released in 1980. With the release of this manual, autism became formally recognized as a developmental disorder distinct from schizophrenia for the first time. This was a major milestone in enabling research into autism, since researchers now had a unified definition of the disorder. Asperger's work became known to a wider audience, thanks in part to new publications by Lorna Wing.
Awareness of autism in the public culture increased with the release of Rain Man and other media productions, and stronger self-advocacy by autistic people laid the foundations of the neurodiversity movement and helped secure better legal rights for autistic people.
DSM-III and DSM-III-R
DSM-III
Under advisement from the NSAC, the DSM-III (1980) turned what was previously defined as childhood schizophrenia into three kinds of "pervasive developmental disorder" (PDD). "Infantile autism" began before a child was 30 months old, and "childhood onset pervasive developmental disorder" began between 30 months and 12 years. A third variety, "atypical pervasive developmental disorder" was similar but lesser than the other two, and could begin at any time. "Elective mutism" was now categorised as in independent condition.
"Withdrawing reaction of childhood (or adolescence)" became "schizoid disorder of childhood or adolescence". The DSM-III notes that people with this condition have qualifying symptoms "Not due to Pervasive Developmental Disorder; Conduct Disorder, Undersocialized, Nonaggressive; or any psychotic disorder, such as Schizophrenia."
"Schizoid personality" in adults was split into "schizoid personality disorder", "avoidant personality disorder" and "schizotypal personality disorder". The first two differed by the motivation of diagnosed person - "avoidant" people had social difficulties but wanted to be social, while "schizoid" people had social difficulties and were happy to stay that way. "Schizotypal" people were on the schizophrenia spectrum - the condition was not well aligned with conceptions of autism.
The DSM-III gave much more detail for its conditions than previous editions had done, providing comprehensive diagnostic criteria for the first time.
DSM-III-R
In 1987, the revised DSM-III-R was released. In this edition of the DSM, "infantile autism" was merged with "childhood onset pervasive developmental disorder" to create the new "autistic disorder". The new definition broadened the range of neurotypes that were considered "autistic" by clinicians. The DSM's third PDD category became "pervasive developmental disorder not otherwise specified" (PDDNOS, later PDD-NOS). "Schizoid disorder of childhood or adolescence" was absorbed by the PDD category as a whole. "Schizoid personality disorder" in adults, "avoidant personality disorder" and "elective mutism" continued to exist.
The DSM-III-R noted that "The evidence suggests, however, that [autistic disorder] is merely the most severe and prototypical form of the general category Pervasive Developmental Disorders ... Whereas in clinical settings Autistic Disorder is more commonly seen than PDDNOS, studies in England and the United States, using criteria similar to those in this manual, suggest that PDDNOS is more common than Autistic Disorder in the general population."
The book also stated that "In Schizoid and Schizotypal Personality Disorders there are deficits in interpersonal relatedness. The diagnosis of Autistic Disorder preempts the diagnosis of these personality disorders. However, these personality disorders preempt the diagnosis of Pervasive Developmental Disorder Not Otherwise Specified."
Lorna Wing on Asperger's syndrome
Lorna Wing's February 1981 publication of the paper Asperger's Syndrome: A Clinical Account greatly increased awareness of the existence of Hans Asperger's autism work. Wing summarised Asperger's autism syndrome, and made two challenges to points he had made. She also provided six case studies of her own, and much additional analysis. The paper brought the concept of "Asperger's disorder" into the spotlight, leading to it being recognised by many psychological practitioners.
Regarding the breadth of people with the condition, Wing notes:As to the relationship between schizoid personality disorder and Asperger's syndrome, Wing writes:
Scientific developments
The Childhood Autism Rating Scale (CARS) was released in March 1980 by Americans Eric Schopler, Robert Jay Reichler, Robert F DeVellis and Kenneth Daly.
In 1981, Jakob Lutz published the paper "Hans Asperger und Leo Kanner zum Gedenken" (Hans Asperger and Leo Kanner in memoriam).
The Minspeak image-based language was first implemented on a computer in 1981. It was developed by American linguist Bruce R Baker. It has gone on to become popular on augmentative and alternative communication devices.
In 1983, Swiss-American neurologist Isabelle Rapin and psycholinguist Doris A Allen suggested the term semantic pragmatic disorder to describe the communicative behavior of children who presented traits such as pathological talkativeness, deficient access to vocabulary and discourse comprehension, atypical choice of terms and inappropriate conversational skills. They referred to a group of children who presented with mild autistic features and specific semantic pragmatic language problems. (In the late 1990s, the term "pragmatic language impairment" (PLI) was proposed to cover this situation.)
The popular academic book Educating and understanding autistic children was edited by Americans Robert L. Koegel (psychiatrist), Arnold Rincover and Andrew L. Egel (educationalist), and released in 1983.
In September 1985, Felix F. de la Cruz outlined extensively the physical, psychological, and cytogenetic characteristics of people with Fragile X syndrome in addition to their prospects for therapy.
A controversial claim suggested that watching extensive amounts of television may cause autism. This hypothesis was largely based on research suggesting that the increasing rates of autism in the 1970s and 1980s were linked to the growth of cable television at the time.
Multiplex developmental disorder was conceptualised by American Yale University researchers Donald J. Cohen (psychiatrist), Rhea Paul (speech pathologist) and Fred Volkmar (psychiatrist) in March 1986. They proposed that it be recognised as a variety of autism in the DSM, however this did not occur.
The Handbook of autism and pervasive developmental disorders is a popular academic book about autism that was first released in 1987. The first edition was edited by Americans Donald J. Cohen (psychiatrist), Anne M. Donnellan (educational psychologist) and Rhea Paul (speech pathologist). New editions were published in 1997, 2005 and 2014. Additional editors included the Americans Fred Volkmar (psychiatrist), Ami Klin (psychologist), Sally J. Rogers (psychologist) and Kevin A. Pelphrey (neuroscientist).
Mind-blindness is a term first published in early 1990 by British psychologist Simon Baron-Cohen at the University of Cambridge. It refers to the idea that "people with autism are impaired in their ability to attribute mental states (such as beliefs, knowledge states, etc.) to themselves and other people". This is otherwise known as an impaired theory of mind (ToM). Baron-Cohen believed that a lack of ability to read eyes was a particularly important deficit, and developed a training program to develop this. It is now thought that all autistic people have some ToM ability. Baron-Cohen, Scottish psychologist Alan M Leslie and Uta Frith released another well-cited paper on the topic in 1985. Baron-Cohen's book Mindblindness: An Essay on Autism and Theory of Mind was released in 1995.
The Autism Diagnostic Observation Schedule (ADOS) was developed in 1989 by Catherine Lord, Michael Rutter, Susan Goode, Jacquelyn Heemsbergen, Heather Jordan, Lynn Mawhood and Eric Schopler. It became commercially available in 2001. (A revised version, ADOS-2, was released in 2012).
The Autism Diagnostic Interview (ADI) was also developed in 1989 by Ann Le Couteur, Michael Rutter, Catherine Lord, Patricia Rios, Sarah Robertson, Mary Holdgrafer and John McLennan. An updated version, the ADI-R, was commercially released in 2003.
Hans Asperger's early papers were first published in English in 1991, as part of the book Autism and Asperger Syndrome. They were translated by the book's editor, Uta Frith. This further increased awareness of Asperger's work, and of the concept of "Asperger syndrome".
Applied behavior analysis
The Early Start Denver Model of autism treatment for young children was developed in 1981 by American psychologists Sally J Rogers and Geraldine Dawson. It was initially called the "play school model", because its main actions happened during children's play. It is considered a variety of ABA.
Positive behavior support (PBS, PBIS, SWPBS or SWPBIS) emerged from the University of Oregon in the mid-1980s. It is a type of ABA that is typically used in schools. Tim Lewis is a noted practitioner of the concept, and is often credited as a co-founder. The Association for Positive Behaviour Support was founded in 2003.
Pivotal response treatment (PRT) was pioneered by Americans Robert Koegel, Mary O'Dell and Lynn Kern Koegel in 1987. It is a "naturalistic" form of ABA used with young children. PRT aims to teach a few “pivotal skills”, that will help the student learn many other skills. Initiating communication with others is deemed one such pivotal skill.
Ivar Lovaas released a major report on the decades established UCLA Young Autism Project in 1987, defining a new method of ABA. Lovaas controversially reported that half his pre-school patients that received intensive therapy now had an IQ level equal to their non-autistic peers, and had "recovered" from their autism. It is sometimes called the "Lovaas method/model/program" and sometimes the "UCLA model/intervention". It has become the primary form of Early Intensive Behavior Intervention (EIBI), and now is often referred to by that name as well. One methodology it developed was discrete trial training, which has become a well-used ABA technique.
The commonly-used textbook Applied Behavior Analysis was first released by American educationalists John O Cooper, Timothy E Heron, and William Lee Heward at Ohio State University in 1987. New editions were published in 2007 and 2019.
Non-ABA treatment and support
In a February 1981 publication, Lorna Wing noted that although she believes there is currently no treatment for autism, "handicaps can be diminished by appropriate management and education" and that "techniques of behaviour modification used with autistic children can possibly be helpful if applied with sensitivity".
The LEAP (Learning Experiences - An Alternative Program for Preschoolers and Parents) curriculum model was developed by American psychologist Phillip Strain of the University of Pittsburgh in 1981. The first paper explaining it was published in 1984. The program has autistic and non-autistic pre-schoolers share a classroom, with the latter assisting the former. It is considered a more-cognitive rather than a more-behaviourist form of teaching. It is also considered one of the best researched forms of training for autistic pre-schoolers.
The Picture Exchange Communication System (PECS) was developed in 1985 at the Delaware Autism Program by Andy Bondy and Lori Frost. It is a communication teaching method for people with limited speech.
Social skill teaching method, Social Stories, began its development in 1989 by American teacher Carol Gray. A survey of Ontario autism support workers in 2011 found that 58% had support programs influenced by her.
Start of the neurodiversity movement
The United Nations declared 1981 the International Year of Disabled Persons. This gave increased focus on people with disabilities in many countries. The physically disabled British musician Ian Dury released the song Spasticus Autisticus in protest to elements of the year.
In 1983, building on developments over the previous twenty years, the disabled British academic Mike Oliver coined the term "social model of disability," which posits that "disability" is caused by a lack of acceptance by society of people's non-typical natures. This was contrasted with the "medical model of disability", which posits that disability is that non-typical nature.
American Jim Sinclair is credited as the first person to communicate the "anti-cure" or "autism rights" perspective in the late 1980s. In 1992, Sinclair co-founded the Autism Network International (ANI) with Kathy Grant and Donna Williams. ANI is an organization that publishes newsletters "written by and for autistic people". This grew into the autism rights movement.
Neurodiversity is the idea that people can think differently to the norm without those differences being a medical problem. Australian sociologist Judy Singer and American self-advocate Jane Meyerdin coined the term in 1998. It was used by the group known as the "Institute for the Study of the Neurologically Typical" (INST). The term first appeared in print in the September 1998 article Neurodiviersity in The Atlantic, by American journalist Harvey Blume. The term neurodivergent was later coined in 2000 by American neurodiversity activist Kassiane Asasumasu.
Mirror neurons
Researchers Giacomo Rizzolatti, Giuseppe Di Pellegrino, Luciano Fadiga, Leonardo Fogassi, and Vittorio Gallese at the University of Parma published a paper announcing the existence of mirror neurons in 1992. They found that when a monkey watches another monkey doing something, specialised neurons in the first monkey's brain fire in a way that mirrors the firing of the neurons in the acting monkey. The same scientists later found the same thing in human brains.
It has been proposed that differences in the mirror neuron system could in part explain differences between autistic and neurotypical people. A well-cited study in 2006 by American psychiatrist Mirella Dapretto and others found such a connection.
Later research, however, did not support this connection.
Diagnostic tools for toddlers
The Checklist for Autism in Toddlers (CHAT), a tool for diagnosing autism in children aged 18–24 months, was first published in December 1992 by Simon Baron-Cohen, Jane Allen and Christopher Gillberg. Simon Baron-Cohen and others also developed another test for autism in 18-month-olds, which was published in February 1996.
The Modified Checklist for Autism in Toddlers (M-CHAT) was developed in 1999 by American psychologists Diana Robins, Deborah Fein and Marianne Barton. Revised versions, the M-CHAT-R (2009) and M-CHAT-R/F were later released.
In specific countries
In China
Autism was first diagnosed in the People's Republic of China in 1982 by Professor Tao Guotai (陶国泰) from the Nanjing Brain Hospital. He presented the case in a Chinese journal. In the late 1980s, he introduced his findings to the global audience in English.
The "China Compulsory Education Law" (中华人民共和国义务教育法) was enacted in 1986. Like the American EHA, it required public schools to accept students with disabilities.
In the United States
The US congress endorsed Autism Awareness Month in 1984.
The Americans with Disabilities Act of 1990 made it illegal to discriminate against people based on their disability, in a number of important categories. It also required covered employers to provide reasonable accommodations to employees with disabilities, and imposed accessibility requirements on public accommodations.
In Finland
Autism found its way into the Finnish disease classification in 1987. (It was only in 1996 that it was finally removed from the category of psychosis in the Finnish version of the ICD-10.)
Newly established organizations
Domus Instituto de Autismo was established in Mexico in May 1980 by parents of children with autism.
Autism-Europe began in 1983, co-ordinating autism organisations across Europe.
In Brazil, (AMA, Association of Friends of the Autistic) was founded in 1983. Within a year of this, they were running a school. They soon became their country's main autism association.
The Autism Society of Taiwan (中華民國自閉症總會) was founded in January 1985.
Eleven mothers of autistic children in the Philippines held a gathering in 1987. In March 1989, they and others founded the Autistic Children and Adults of the Philippines (ACAP) Foundation. The group became the country's predominant autism organisation. It is now known as Autism Society Philippines.
1987 saw America's National Association for Autistic Children became the Autism Society of America.
A new national French autism organisation was founded in February 1989.
Representative organisation Autism South Africa (A;SA) was founded in 1989 by concerned parents and professionals.
In Saudi Arabia, the Saudi Autistic Society (الجمعية السعودية الخيرية للتوح) was founded in January 1990.
In India, Action for Autism (AFA) began in 1991 as a parent support group. It soon became India's foremost autism organisation.
In Turkey, a support group for parents of children with autism began in 1991. It reformed as the Turkish Autistic Support and Education Foundation (TODEV) in 1997. It is Turkey's pre-eminent autism group.
Popular books and other media
Popular American movie Rain Man was released in 1988. Its titular character was an autistic man. Bernard Rimland was consulted on how the character was portrayed. The movie did much to define public understanding of the condition.
The book Autism: Explaining the Enigma was released by Uta Frith in 1989. It explained to non-autistic people how autistic people thought. A second edition was published in 2003.
The popular book Children with autism: a parents' guide was also released in 1989. It was edited by American psychologist Michael D. Powers. A second edition was published in 2000. The similar Asperger's syndrome and your child: a parents' guide was released in 2002.
Asperger syndrome acknowledged (1994–2012)
The 1990s saw the continued popularization of autism both in popular culture and in the scientific community. The newly ICD and DSM endorsed condition "Asperger syndrome" saw a particularly strong increase in attention.
ICD and DSM changes
The 1990s saw the release of both the ICD-10 and the DSM-IV, as well as the revised version DSM-IV-TR. Notably, Asperger syndrome came to be recognized as condition distinct from, but related to, autistic disorder/childhood autism.
ICD-10
The ICD-10 was first published in 1992, for use beginning in 1994. It made a number of changes to its categorisation of autism-related conditions. It newly included "Asperger syndrome" (F84.5) - its first recognition by a major mental health body. It also included "childhood autism" (F84.0), and a category for "atypical autism" (F84.1, similar to the DSM's PDD-NOS).
The ICD-10 categorised all of these as "pervasive developmental disorders", as the DSM had done since 1980. The ICD childhood shyness conditions were incorporated into the new section "disorders of social functioning with onset specific to childhood and adolescence", with a category for elective mutism (F94.0) and various categories not specifically aligning with common autism symptoms. "Schizoid personality disorder" would remain, though its subcategories would not. (The ICD-9 would continue to be used for coding by some organisations in the United States until 2015.)
DSM-IV: autistic disorder, Asperger syndrome and other conditions
In 1994, reflecting the better understood diversity of autistic experience, the DSM-IV included a number of newly defined PDD conditions. "Autistic disorder" was redefined, and supplemented with the new conditions Asperger syndrome, Rett syndrome and childhood disintegrative disorder (CDD). PDD-NOS remained. The definition of Asperger syndrome required those with it to have speech and language difficulties.
This edition also saw the defining of developmental coordination disorder (DCD), a condition featuring "a marked impairment in the development of motor coordination." The DSM acknowledged that these symptoms were common in people with PDDs, and excluded such people from being diagnosed with DCD. In October 1994, the International Consensus Meeting on Children and Clumsiness adopted the concept of DCD, choosing to use it in place of earlier descriptions of child clumsiness. This led to the adoption of the concept by occupational therapists and physiotherapists as covering all abnormal child clumsiness.
Schizoid personality disorder and avoidant personality disorder also remained in the manual. "Elective mutism" became "selective mutism".
American psychiatrist Fred Volkmar was the lead author of the autism section in the DSM-IV. (From 2007, Volkmar would later be the fourth editor of the Journal of Autism and Developmental Disorders).
DSM-IV TR
The DSM-IV TR (2000) contained an almost complete rewrite of the definition of Asperger syndrome. Notably, it now no longer included speech and language difficulties. This greatly increased the number of people deemed to have the condition.
Temple Grandin
American animal behaviourist Temple Grandin came to prominence in 1996, with the publishing of her popular book Thinking in Pictures: My Life with Autism in November 1995. She would later become a board member of the Autism Society of America. Together with Catherine Johnson, she coauthored the popular book Animals in Translation: Using the Mysteries of Autism to Decode Animal Behavior, which was published in December 2004. In February 2010, a movie titled Temple Grandin about her life was released.
Fraudulent vaccine study
In February 1998, British doctor Andrew Wakefield published a controversial paper claiming a link between some vaccines and autism. It was subsequently found to be fraudulent. He would go on to retract the paper in 2010, and he subsequently lost his license to practice medicine.
Treatment and support
Leadership of the TEACCH Autism Program passed from Eric Schopler to American psychologist Gary Mesibov in 1992. Mesibov subsequently also succeeded Schopler as editor of the Journal of Autism and Developmental Disorders from 1997 to 2007.
American speech therapist Michelle Garcia Winner began to develop the Social Thinking Methodology in the mid-1990s, and established the Social Thinking company shortly afterwards. The organisation has subsequently developed a wide range of resources for teaching social skills to people with autism. Winner's works were a substantial influence on Ontario autism support workers in 2011.
The developmental social-pragmatic (DSP) model of autism teaching emerged in the late 1990s. It aims to work with and strengthen autistic children's desires to successfully communicate (as well as their ability to), with parents and teachers conversing with children in as non-contrived ways as possible. It emphasises cognitive psychology more than typical, behaviourism focused, varieties of ABA.
The influential book Asperger's Syndrome: A Guide for Parents and Professionals was published by British-Australian psychologist Tony Attwood in 1998. Attwood went on to publish widely on autistic topics. A survey of Ontario autism support workers in 2011 found that 52% had support programs influenced by him.
Relationship Development Intervention was developed by American psychologist Steven Gutstein in the 1990s. It is designed to increase someone's desire and ability to be social. It became better known after the publishing of books on the topic in 2002.
Fred Frankel and Robert Myatt developed the Children's Friendship Training (CFT) model over two decades at UCLA, publishing a book on it in 2002.
The SCERTS Model: A Comprehensive Educational Approach for Children with Autism Spectrum Disorders was published in June 2004 by five American authors. The model covers children's social communication (SC), emotional regulation (ER), and transactional support (TS). The model continues to be developed.
Tony Attwood released the program Exploring Feelings: Cognitive Behaviour Therapy to Manage Anxiety in 2004. It is recommended for use with autistic children by the ASHA.
"Paediatric Autism Communication Therapy" (PACT), a technique for teaching parents of young autistic children how to better communicate with them, was first released through a paper in November 2004. It was written by three British researchers, speech therapist Catherine Aldred, psychiatrist Jonathan Green, and speech therapist Catherine Adams.
The Raising Children Network launched raisingchildren.net.au in May 2006, with the endorsement and financial support of the Australian government. This website provides extensive information for raising autistic children.
Simon Baron-Cohen and others released an animated series for autistic pre-schoolers called The Transporters in 2006. Its creators claimed that autistic children could learn to read facial emotions as well as non-autistic children after repeated viewing, addressing their alexithymia. The series was nominated for a BAFTA. The British-voiced version of the series is available for free under a Creative Commons licence.
The notable book No More Meltdowns was published by American Jed Baker in April 2008. This and his other works were substantially influential on Ontario autism support workers in 2011.
American teacher Brenda Smith Myles at the University of Kansas began writing well-received books to help people with Asperger syndrome in the late 1990s. These books were also a substantial influence on Ontario autism support workers in 2011.
Pathological demand avoidance
In July 2003, British child psychologist Elizabeth Newson at the University of Nottingham published an article in the Archives of Disease in Childhood journal arguing that pathological demand avoidance (PDA) be recognised as a unique profile within the autism spectrum. She had first seen the pattern of PDA in children in 1980. She believed that autistic people with pronounced PDA symptoms tend to behave quite differently to those that do not, and that people with PDA symptoms often do not have common autistic symptoms.
New diagnostic tools
The "Reading the Mind in the Eyes Test" was first published in 1997 by Simon Baron-Cohen and others. A very well-cited revised version was released in February 2001, which also involved British experimental psychologist Sally Wheelwright.
Also in February 2001, the autism-spectrum quotient (AQ), a measure of autism within an individual, was released by a Simon Baron-Cohen-led team from the University of Cambridge.
The "Diagnostic Interview for Social and Communication Disorders" (DISCO) was released in March 2002 by Lorna Wing and others. It was a further development of the child-specific "Handicaps Behaviour and Skills" (HBS) schedule Wing had developed in the 1970s. As of 2023, it is still in use in the UK.
The "Social Communication Questionnaire" (SCQ) is a commonly used tool for measuring autism social symptoms. It was released as the "Autism Screening Questionnaire" (ASQ), by British psychiatrists Michael Rutter and Anthony Bailey, and American psychologist Catherine Lord, in 2003.
The empathy quotient measure was released in April 2004 by Simon Baron-Cohen and Sally Wheelwright.
In February 2008, American psychiatrist Riva Ariella Ritvo of Yale University and others released the Ritvo Autism and Asperger Diagnostic Scale (RAADS). A revised version, RAADS-R, was released in 2011.
In the United States
The atypical antipsychotic drug risperidone was approved in the United States for treating autism-associated aggressive and self-injurious behaviors in October 2006. The similar but less problematic drug aripiprazole was approved in 2009.
The United States passed its Combating Autism Act in December 2006, providing US$1 billion for autism services and research in that country, over five years.
The US state of South Carolina enacted Ryan's Law in July 2008. This requires health insurers to provide up to $50,000 of behavioral therapy each year for people with autism aged 16 and younger.
Autism Speaks
American advocacy organisation Autism Speaks was founded in 2005 by businessman Bob Wright and his wife Suzanne Wright, grandparents of a child with autism. In 2023, the organisation claimed it had so far provided more than 18 million people with free autism information and resources. It adopted a puzzle piece as part of its logo.
Simons Foundation Autism Research Initiative
The Simons Foundation established the Simons Foundation Autism Research Initiative (SFARI) in 2006. As of 2023, the foundation has a research budget of over US$100 million per year.
The SFARI website launched a "News & Opinion" section in 2008. This grew, and was given its own identity as Spectrum in 2015. This has become an important autism research news website.
Recognition in China
China's Eleventh Five Year Development Programme for the Disabled (中国残疾人事业"十一五"发展纲要) was released in 2006. It officially recognised autism as a neurological disability.
Autistic Self Advocacy Network (ASAN)
The Autistic Self Advocacy Network (ASAN) was co-founded in November 2006 by Americans Ari Ne'eman and Scott Michael Robertson. It has positioned itself as America's foremost body of autistic people representing the interests of autistic people. In early 2017, Julia Bascom became the second president of ASAN.
Affiliated bodies were later formed in Australia/New Zealand, Canada and Portugal.
The Academic Autistic Spectrum Partnership In Research and Education (AASPIRE) was also founded in the United States in 2006. It focuses on improving the lives of autistic adults. It has come to work closely with ASAN.
ASAN's activities have included organising the first Disability Day of Mourning on 1 March 2012, which commemorates disabled people who were killed by their parents. The organisation also assisted in the production of the 2020 Pixar short film Loop by Erica Milsom, which features a non-verbal autistic teenage girl.
World Autism Awareness Day
World Autism Awareness Day was first held by the United Nations in April 2007. Lighting buildings with blue light at night is a common means of awareness raising on this day. Autism Speaks quickly embraced it. This had led some neurodiversity-embracing autistic people to shun using the colour blue to represent autism.
Great National Cause in France
Each year, the French government assigns a "Great National Cause" for the country to focus on. This includes much free publicity on state television and radio. Autism was the cause for 2012.
Other scientific developments
"Executive Functions and Developmental Psychopathology" is a well-cited paper published in January 1996. In it, the Americans Bruce F Pennington (psychiatrist) and Sally Ozonoff (psychologist) explored the effects of various conditions (including autism) on executive function.
The first edition of the scientific journal Autism was published in July 1997 by the British National Autistic Society.
There are certain specialised parts of the brain that non-autistic people use to process face information. American psychiatrist Karen Pierce and others found that autistic people do not use these parts of the brain for this task. They also found that the fusiform face area in individuals with autism has a reduced volume. They published a paper on these and related findings in October 2001.
The empathising–systemising theory of autism was released by Simon Baron-Cohen in June 2002. He and others would go on to develop it in subsequent years.
British psychiatrist Chris Frifth and his wife Uta Frifth published a well-cited short description of theory of mind in 2004.
In October 2006, N. Carolyn Schanen (of the University of Delaware), found two chromosomes with a strong epigenetic association with autism.
The scientific journal Research in Autism Spectrum Disorders was first published in January 2007 by Elsevier.
The well-cited paper "Strong Association of De Novo Copy Number Mutations with Autism" was published in April 2007 by 32 people including Jonathan Sebat and Daniel Geschwind. It found that de novo germline mutation was a more significant causative factor for ASD than was previously recognised.
The imprinted brain hypothesis of autism was first presented by Bernard Crespi and Christopher Badcock of Canada's Simon Fraser University in June 2008.
"Psychiatric disorders in children with autism spectrum disorders: Prevalence, comorbidity, and associated factors in a population-derived sample" is a well-cited paper published in August 2008. Its six authors included the Britons Emily Simonoff (psychiatrist) and Andrew Pickles (biostatistician). It found that seventy percent of its autistic sample had at least one other recognised psychiatric condition, and that 41% had two or more. The most common comorbid diagnoses were social anxiety disorder (29%), ADHD (28%), and oppositional defiant disorder (28%).
The open access scientific journal Molecular Autism was founded in the UK by BioMed Central in 2010.
In May 2011, American neuroscientist Jared Reser proposed that autistic traits, including increased abilities for spatial intelligence, concentration and memory, could have been naturally selected to enable self-sufficient foraging in a more (although not completely) solitary environment, referred to as the "Solitary Forager Hypothesis".
The concept of the double empathy problem was first described as such in October 2012 by British psychologist Damian Milton. The idea proposes that the interaction issues between autistic and non-autistic people are at least in part because these two types of people think differently from each other, understand other people in their own group, but have difficulty understanding people that think differently. This contrasts with the idea that the interaction issues are due to autistic people having lesser social understanding abilities than non-autistic people.
The Australian government established its national autism research organisation Autism CRC in March 2013.
Organizations
The first International Conference on Autism was held in Toronto, Canada, in July 1993. It was organised by the Autism Society of America and Autism Society Canada. 2300 delegates from 47 countries attended.
In 1999, the Autism Society of America adopted the puzzle ribbon as a sign of autism awareness.
This period also saw the establishment of various new autism-related organizations:
Stars and Rain was the first non-governmental organization established for autism in China. It was founded in March 1993 by Tian Huiping (田慧萍), a mother of a child with autism. The institution runs training programs for both parents and children, and overall has a focus on ABA.
The nation-wide (Autism Spain) was established in Spain in January 1994 by the coming together of autonomous community based organisations.
The Korean Autism Society (한국자폐학회) was founded in South Korea in 1994. It has focused on professionals who treat those with the condition.
The US National Alliance for Autism Research was founded in 1994. (It merged with Autism Speaks in early 2006).
(Indonesian Autism Foundation) was founded in by five doctors and eight parents of people with autism in 1997.
The Behavior Analyst Certification Board was founded in May 1998 in the United States to provide accreditation for ABA practiconers. It quickly became an established international authority.
On November 21, 1998, the World Autism Organisation (WAO) began. It was set up by Autism-Europe to prompt the UN to do more about autism, and to increase autism support in countries with few services of that kind.
The United States' Interagency Autism Coordinating Committee was set up in 2000. It coordinates US government autism actions.
In 2001, the autistic daughter of Israeli Major General Gabi Ophir inspired him and others to establish Special in Uniform, an organisation that supports a squad of teens with disabilities or autism in the Israel Defense Forces.
(PAS, Persons on the Autism Spectrum) was founded in the Netherlands in 2001. It represents autistic people with normal or higher IQs.
Autistic-specialist employment services company Specialisterne was founded by Danish IT worker Thorkil Sonne in 2003. It has gone on to operate in various parts of Europe, North America and Australia.
Aspies For Freedom (AFF) was established in 2004 as a global online organisation by Welsh husband-and-wife Gareth Nelson and Amy Nelson. AFF celebrated the first Autistic Pride Day on 18 June 2005.
The autism community website Wrong Planet was started in 2004 by Dan Grover and Alex Plank.
The British autism research charity Autistica was founded in 2004 by German-British software entrepreneur Dame Stephanie Shirley.
(한국자폐인사랑협회는) was founded in South Korea in January 2006. It has focused on representing people with autism and their parents.
Israeli people-with-autism representative organisation began in early 2006.
The UK's Autism Education Trust was established by the National Autistic Society and the UK's Department for Children, Schools and Families in 2007. It is tasked with ensuring that all British children with autism are educated appropriately, through better education of their teachers.
Autism Spectrum News began as a quarterly print publication in the United States in 2008. It became online-only in 2021.
The Autism Science Foundation was founded in the United States in April 2009, by Alison Singer and Karen Margulis London. Its founders broke away from Autism Speaks due to its focus on funding research into possible links between vaccines and autism.
Other popular self-help books
A popular book of 1998 was sensory processing guide The Out-of-Sync Child by American music and movement teacher Carol Stock Kranowitz. New editions were published in 2005 and 2022.
The Introvert Advantage: How to Thrive in an Extrovert World was a popular book released by American psychologist Marti Olsen Laney in February 2002.
August 2002 saw the publishing of Freaks, Geeks, and Asperger Syndrome: A User Guide to Adolescence by 13-year-old British adolescent with Asperger syndrome, Luke Jackson. The book was praised by Sula Wolff. In January 2004, Luke and his family featured in the BBC documentary feature My Family and Autism. In 2005, a fictional movie based on the family, Magnificent 7, was aired on the BBC. It included a character based on Luke's mother, fellow autistic subject author Jacqui Jackson.
Another book first published in August 2002 was A Parent's Guide to Asperger Syndrome and High-Functioning Autism by American psychologist Sally Ozonoff. A second edition, A Parent's Guide to High-Functioning Autism Spectrum Disorder: How to Meet the Challenges and Help Your Child Thrive, was published in 2014 by Ozonoff and fellow American psychologists, Geraldine Dawson and James C. McPartland. Over 125,000 copies of the books have been printed.
Raising a Sensory Smart Child was first released in March 2005 by two Americans, the occupational therapist Lindsey Biel and the writer Nancy Peske. New editions were released in 2009 and 2018.
Ten Things Every Child with Autism Wishes You Knew was first published by American speech therapist Ellen Notbohm in 2005. New editions were published in 2012 and 2019. Over 250,000 copies have been sold.
ABA book The Verbal Behavior Approach: How to Teach Children With Autism and Related Disorders was released in May 2007 by two Americans, nurse Mary Barbera and writer Tracy Rasmussen.
Released in September 2007 was the book Louder Than Words: A Mother's Journey in Healing Autism by American mother Jenny McCarthy.
Smart but Scattered: The Revolutionary "Executive Skills" Approach to Helping Kids Reach Their Potential was released in January 2009. Written by American psychologists Peg Dawson and Richard Guare, it has over 375,000 copies in print.
Other books and media
Other popular books and other media were published during this period, most notably the following:
Personal memoir Nobody Nowhere: The Extraordinary Autobiography of an Autistic Girl by Australian Donna Williams was published in 1992, and was on the New York Times Bestsellers list in 1993.
The Hollywood action movie Mercury Rising (1998) featured an autistic boy.
Pretending to Be Normal: Living with Asperger's Syndrome was an autobiography published by American researcher Liane Holliday Willey in 1999. She also coined the term aspie. She released an updated edition in 2014. (The book was praised by Sula Wolff). She went on to write a number of other books on autism topics.
The book The Fear of Game Brain (ゲーム脳の恐怖) was released by Japanese physiologist Akio Mori in 2002, and sold over 100,000 copies in Japan. In a related speaking engagement, Mori was believed to say that autism is at least in part caused by people spending too much time playing video games. However, Mori refuted this assertion to Autism Society Japan.
The British fiction book The Curious Incident of the Dog in the Night-Time was published in May 2003 by Mark Haddon. It features a protagonist that the publishers have said has Asperger's syndrome, but was not specifically written that way. In 2012, it was made into a successful West End play, which then went to Broadway in 2014.
Mozart and the Whale, an American romantic comedy-drama film about two people with Asperger's syndrome, was first released in September 2005. It was based on a true story.
The documentary feature Normal People Scare Me: A Film About Autism was produced by American actor Joey Travolta in 2006.
The popular photo-book All Cats have Asperger Syndrome was released in October 2006 by Australian teacher Kathy Hoopmann. A second edition (retitled All Cats have Autism) was released in 2020. She also wrote other books about autism and related conditions.
2007 also saw the publishing of The Reason I Jump, a bestselling memoir attributed to Naoki Higashida, a Japanese 13-year-old boy with autism. It was released in English in 2013, and has been translated into over 30 languages.
Children of the Stars (来自星星的孩子) is a 2007 documentary about lives of autistic children in China.
Another popular book of 2007 was Look Me in the Eye: My Life with Asperger's by American John Elder Robison, first released in September that year. Robison would later become a board member of Autism Speaks.
The character Sheldon Cooper first appeared on American television in September 2007, in the popular sitcom The Big Bang Theory. While he is not explicitly autistic, according to the actor who plays him as an adult, the character "couldn't display more traits" of Asperger's syndrome.
The soap opera Aapki Antara first went on air in India in June 2009. The title character of the series is an autistic girl.
The book A history of autism: a conversation with the pioneers was released in October 2010 by British autism researcher Adam Feinstein, having been commissioned by Autistica founder Dame Stephanie Shirley.
Neurodiversity and autism as a spectrum (since 2013)
In 2013, the DSM-5 eliminated Asperger syndrome as a separate diagnosis, instead considering autism to be a spectrum disorder, now referred to as autism spectrum disorder (ASD). Both in the research community and among autistic people, there is ongoing debate about whether autism should be considered a disorder, or whether it should be thought of as merely a different way of being.
DSM-5
In May 2013, the DSM-5 was released. It combined "autistic disorder", "Asperger's disorder", "CDD" and "PDD-NOS" into the broader concept of "autism spectrum disorder" (ASD), and discontinued the four earlier conditions. It also grouped the symptoms into two groups - impaired social communication and/or interaction, and restricted and/or repetitive behaviors. The new definition was narrower than the collective definitions of its DSM-IV predecessors had been, reducing the number of neurodiverse people covered by it.
The DSM-5 assigned three "severity levels" for ASD, with people in level 1 "requiring support", level 2 "requiring substantial support" and level 3 "requiring very substantial support". Many autism activists believe the autistic spectrum should not be measured in this way, as it does not take into account the greatly varying attributes the people in the different DSM severity levels have.
DSM publishers, the American Psychiatric Association, said that "The revised diagnosis represents a new, more accurate, and medically and scientifically useful way of diagnosing individuals with autism-related disorders." It also noted that the conditions that the new ASD condition replaced "were not consistently applied across different clinics and treatment centers".
A new condition of social (pragmatic) communication disorder was added. This does not apply to people who fulfil all of the ASD criteria, but to those who only have the social communication difficulties found in the ASD definition.
"Schizoid personality disorder", "avoidant personality disorder" and "selective mutism" remained.
Another major change in this edition of the DSM was allowing individuals to be diagnosed with both ASD and ADHD. Previously, under the DSM's rules people could only be diagnosed as having one of their antecedent conditions. There is evidence to suggest that a majority of people with ASD also have ADHD.
Similarly, people diagnosed with ASD could now also be diagnosed with other commonly co-morbid psychiatric syndromes such as social anxiety disorder, oppositional defiant disorder and developmental coordination disorder.
ICD-11
January 2022 saw the first official use of the ICD-11. This version of the ICD combined all PDD conditions as "autistic spectrum disorder" (following the DSM's practice). However, unlike the DSM-5, the ICD-11 included a number of ASD subdivisions.
Science
Diagnostic test, the "Aspie Quiz", was released by Leif Ekblad of Sweden in July 2013.
Autism Speaks, Hospital for Sick Children (Toronto) and Google Genomics began the AUT10K project in 2014. It created one of the world's largest collections of autism related genetic material, and had open access to researchers, called AGRE. The project later evolved into the similar MSSNG project. MSSNG aims to "provide the best resources to enable the identification of many subtypes of autism". The MSSNG project was quickly met with criticism from autistic self-advocates.
Brazilian researcher Alysson Muotri and others founded the company Tismoo in 2015, which aims to develop genetic treatments for autism and other conditions.
An October 2016 paper by three researchers from the University of York examines Asperger syndrome as "an alternative prosocial adaptive strategy" which may have developed as a result of the emergence of "collaborative morality" in the context of small-scale hunter-gathering, i.e. where "a positive social reputation for making a contribution to group wellbeing and survival" becomes more important than complex social understanding.
A National Guideline for the Assessment and Diagnosis of Autism Spectrum Disorders in Australia was released by Autism CRC in August 2018.
The well-cited study "Prevalence of Autism Spectrum Disorder Among Children Aged 8 Years — Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2014" was released in April 2018 by 26 US-based authors. It found that one in 59 US children aged 8 years had ASD (nearly 2%). It found that 56% of autistic children had an intellectual disability (with an IQ of 85 or less), and 44% had IQ scores in the average to above average range.
The Camouflaging Autistic Traits Questionnaire (CAT-Q) was released by British psychologist Laura Hull, Simon Baron-Cohen and others in March 2019.
An ABA tool, the graduated electric decelarator, became the third device ever banned by the United States' Food and Drug Administration (FDA) in March 2020. Its main user, the Judge Rotenberg Center, filed a lawsuit against the FDA, and in July 2021, the DC Circuit Court overturned the ban, meaning that the centre can still use the device.
American psychiatrist Lynn Kern Koegel of Stanford University became the sixth editor of the Journal of Autism and Developmental Disorders in 2022. She and her husband had earlier developed pivotal response treatment.
Support
The ASEAN Autism Network was created in January 2010, linking together autism organisations in South East Asia. It held the ASEAN Autism Games athletic competition in 2016 and 2018.
The Program for the Education and Enrichment of Relational Skills (PEERS) was developed by Americans Elizabeth Laugeson and Fred Frankel in 2010, drawing on Frankel's earlier CFT work. Laugeson later established the UCLA PEERS Clinic. PEERS programs are used to teach social skills to autistic and other people in many countries of the world.
In December 2012, Brazil passed the Berenice Piana Law, which created the National Policy for the Protection of the Rights of Persons with Autism Spectrum Disorder. This officially classified autism as a disability under Brazilian law, and increased the condition's profile in the country.
The Iran Autism Association was founded in 2013 by treatment professionals, the autistic and their families.
The United States government passed the Autism CARES Act of 2014, authorising the spending of US$1.3 billion between 2015 and 2019. This extended the work of the Combating Autism Act. The Act was reauthorised in 2019.
The first Social Communication Intervention Programme (SCIP) manual was published in 2015 by British speech and language therapist Catherine Adams. SCIP was based on research she and others had conducted since 2005. The program teaches social communication skills to children. It involves social understanding and social interpretation, pragmatics and language processing.
In 2015, representative body Autism Canada was created through the merger of Autism Society Canada and Autism Canada Foundation.
2016 saw Australia's main state-based and other autism representative organisations group together as the Australian Autism Alliance.
In March 2017, the Russian peak parents-of-autistic-children representative body Autism Regions (Аутизм Регионы) was founded.
Neurodiversity employment services organisation Untapped Group was co-founded by Australian accountant Andrew Eddy in 2017. It operates in the United States and Australia, and notably organises the prominent Autism at Work conferences.
In the United States, the National Council on Severe Autism was founded in January 2019. It is concerned with autistic people who have an IQ of 85 or less.
Australia's National Disability Insurance Scheme went into full operation in 2020. It provides many autistic people in that country with substantial amounts of money to help them live fuller lives.
In April 2021, the American Autism Awareness Month became Autism Acceptance Month.
The National Guideline for Supporting the Learning, Participation, and Wellbeing of Autistic Children and Their Families in Australia was released by Autism CRC in February 2023.
Popular books for helping autistic people and their parents
Aspergirls: Empowering Females with Asperger Syndrome was published by American writer Rudy Simone in 2010. She went on to write a number of other books on autistic subjects.
Emotional control guidebook Zones of Regulation was published by American occupational therapist Leah Kuypers in 2011, to help people with autism and others who needed it. It has since sold over 100,000 copies. Various other products helping people understand and use the Zones concept have since been created.
Understanding Your Child's Sensory Signals: A Practical Daily Use Handbook for Parents and Teachers was released in September 2011 by American occupational therapist Angie Voss. Two further editions have subsequently been published.
Bestselling book Quiet: The Power of Introverts in a World That Can't Stop Talking was published by American writer Susan Cain in January 2012.
The Survival Guide for Kids with Autism Spectrum Disorders (And Their Parents) was released in March 2012 by Americans Elizabeth Verdick (a writer) and Elizabeth Reeve (a psychiatrist). A new edition was released in 2021.
Denver Early Start Model book, An Early Start for Your Child with Autism: Using Everyday Activities to Help Kids Connect, Communicate, and Learn was released by Americans Sally J. Rogers, Geraldine Dawson and Laurie A. Vismara in May 2012. It has sold over 100,000 copies.
The Asperkids' (Secret) Book of Social Rules: The Handbook of Not-So-Obvious Guidelines for Teens and Tweens was published by American social worker Jennifer Cook O'Toole in September 2012. It sold many copies, and won the Autism Society of America's Temple Grandin Outstanding Literary Work of the Year. Jennifer would go on to write a number of other books about autism.
Quiet influence: the introvert's guide to making a difference by American counsellor Jennifer B. Kahnweiler, was released in 2013.
The ABA Visual Language: Applied Behavior Analysis by Japanese ABA practitioner Makoto Shibutani, was published in May 2017.
ABA book Positive Parenting for Autism: Powerful Strategies to Help Your Child Overcome Challenges and Thrive was released by American speech therapist Victoria Boone in December 2018.
Divergent Mind: Thriving in a World That Wasn't Designed for You was released by American journalist Jenara Nerenberg in February 2021. It explores how ADHD, autism, synaesthesia, high sensitivity, and sensory processing disorder manifest in women.
Autism in popular culture
See also
History of Asperger syndrome
Autism in China
References
Autism
Autism