History of autism

See also: History of Asperger syndrome and PT:Autismo no Brazil

Autism has likely existed long before any form of clinical diagnosis was possible, as the formal diagnosis for autism didn't enter the psychological world until 1910. However the definition of autism and its many variations have often been a topic of debate and change as technological and diagnostic methods advance and evolve. The methods of how to best teach those with autism are also often subject to debate and change.

Before the term "autism"

A few examples of autistic symptoms and treatments 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.

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.

In 1877, British doctor John Down used the term "developmental retardation" to describe conditions including what would be considered autism today.

Austrian educator Theodor Heller (1869–1938) defined a condition called "dementia infatilis" 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.

Eugen Bleuler

Eugen Bleuler created the concept of "autism", using it to describe a type of behaviour.

Autism

The New Latin word autismus (English translation autism) was coined by the Swiss psychiatrist Eugen Bleuler in 1910. He first used it in print to describe a symptom of a condition whose name he earlier coined, schizophrenia, in the scientific paper Zur Theorie des schizophrenen Negativismus (On the theory of schizophrenic negativism).

He derived autismus from the Greek word: αὐτός, romanized: autós, lit. 'self', 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".

As to why he created the term, (and giving the first explanation of it's meaning), Bleuler wrote:

[By "autismus" I mean about the same as Freud (but not Havelock Ellis) by "autoerotismus". But I think it is good to avoid the latter expression, as it is misunderstood by anyone not familiar with Freud's writings. I have discussed the concept of it in more detail in the chapter on schizophrenia in the forthcoming Aschaffenbürg Handbooks of Psychiatry.]

Bleuler later adds:

[It goes without saying that autism is not only expressed in a centripetal relationship to the outside world. The patient who wants to shut himself off from reality must not only let his surroundings affect him as little as possible, he must also not want to actively influence it. For two reasons; he would be distracted from his inner being and forced to pay attention to the outside world in order to be able to influence it; but he would also create new sensory stimuli and other connections with reality through the action itself.]

In the earlier mentioned 1911 edition of the "Handbook of Psychiatry" edited by Gustav Aschaffenburg, Bleuler explains what his new term "autism" means:

[The most severe schizophrenics, who no longer have any intercourse at all, live in a world of their own; they have cocooned themselves with their desires, which they consider fulfilled, or with the sufferings of their pursuit, and limit contact with the outside world as much as possible.

This detachment from reality together with the relative and absolute preponderance of inner life is what we call autism...

The name autism says essentially on the positive side what P. Janet negatively describes as "perte du sens de la réalité" [loss of sense of reality]. But we cannot readily accept the latter expression, because it covers the symptom far too generally. The sens de la réalité is not entirely lacking in the schizophrenic, he only fails for those things that have come into conflict with his complexes. Our relatively severe institutional patients are, for the most part, very good at such institutional events that are irrelevant to their complexes. You can get detailed anamneses [patient accounts of their medical history] from them, which are confirmed, etc. In short, they show every day that they have not lost their grasp of reality, but that this ability is only inhibited and lost in certain contexts...

The behavior of many shows at first nothing remarkable; only after a longer period of observation does one see how much they are always looking for their own way and how little they let their surroundings get to them. Even severely ill chronic patients often have a very good connection with their surroundings in normal everyday life; they chat, take part in games, often seek out stimuli - but they choose; they have their complexes to themselves; they never say a word about it and don't want to be touched from the outside...

Delusions, gross violations of logic and decency and similar pathological symptoms arise from autistic thinking. The two forms are often quite well separated, so that the patient can now think completely autistic and now completely normally; in other cases they mix to the point of complete penetration, as we feel for years, as seen above, mostly painful, seldom as comfort...]

Bleuler believed that the idiosyncratic behaviours of autistic children 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.

Schizoid

Bleuler had two years earlier coined another new term, schizoid. This term referred to a force within people that was similar to being autistic, but to a more limited extent. Heavily schizoid people were said to be "comfortably dull and at the same time sensitive, people who in a narrow manner pursue vague purposes". 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 1909 and 1910, August Hoch defined a very similar concept to "schizoid" called the "shut-in" personality, characterised by reticence, seclusiveness, shyness and a preference for living in fantasy worlds, among others. He also said they had "a poorly balanced sexual instinct [and] strikingly fruitless love affairs".

1913-1921

In 1913, the Mental Deficiency Act was passed in England and Wales, ensuring institutional care for all children identified as "mental defectives."

1921 saw the publication of two influential works that repeated and expanded the patterns found in Bleuler's "schizoid" and Hoch's "shut-in" types: Carl Jung's 1921 book Personality Types (using the term "introverted"), and Ernst Kretschmer's 1921 paper Körperbau und Charakter (Physique and Character, which used "schizoid"). "Physique and Character" would be published as a book in English in 1925.

Grunya Sukhareva

Soviet child psychiatrist Grunya Sukhareva (Груня Сухарева) was the first to comprehensively define what is now considered autism.

Sukhareva was born in Kyiv to a Jewish family. Between 1917 and 1921, she 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.

In 1925 she published a paper in Russian containing six case studies and a detailed description of schizoid personality disorder in children, titled Шизоидныепсиxопатиив детскомвозрасте (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 (as translated by Sula Wolff in 1996):

I. An odd type of thinking

a) a tendency towards abstraction and schematization (the introduction of concrete concepts does not improve, but rather impedes thought processes);

b) this characteristic of thinking is often combined with a tendency to rationalization and absurd rumination (see cases 1, 2, 3, 4, 5). This last feature often marks the personality out as odd.

II. An autistic attitude

All affected children keep themselves apart from their peers, find it hard to adapt to and are never fully themselves among other children. Cases 1, 2 and 3 became objects of general ridicule for the other children after their admission to our school. Cases 4 and 5 carried no weight among their peers and were nick-named "talking machine", although their level of overall functioning was far above that of the other children. Case 6 himself avoids the company of children because he finds it painful. All these children manifest a tendency towards solitude and avoidance of other people from early childhood onwards; they keep themselves apart, avoid communal games and prefer fantastic stories and fairy tales.

III. Emotional life

There is a certain flatness and superficiality of emotions (cases 2, 3, 5). The latter is often combined with what Kretschmer has aptly called the Psychasthetic aspect of mood. This mixture of insensitive and oversensitive elements was seen in all our cases. Case 1 had affective sluggishness as well as exaggerated sensitivity; case 2 demonstrated increased irritability resulting in explosive emotional outbursts, combined with affective sluggishness, in line with Bleuler's description of spasms and paralysis of emotions. Case 5 had a generally calm mood state and was at the same time passionately tender towards some of the people close to him. Case 4 was a gloomy, irritable misanthrope but also a tenderly loving son.

Other characteristics were as follows:

a) a tendency towards automatism (cases 1, 2, 3, 4 and 6) manifesting as sticking to tasks which had been started and as psychic inflexibility with difficulty in adaptation to novelty;

b) impulsive, odd behaviour (cases 1, 2, 3);

c) clowning, with a tendency to rhyming and stereotypic neologisms (cases 1, 2, 3, 5);

d) a tendency to obsessive compulsive behaviour (cases 1, 2, 3, 5); and

e) heightened suggestibility (cases 1, 3 and 6).

We did not observe any definite negativism. Apparently unmotivated obstinacy was seen in two cases (5 and 6).

Definite motor impairments were found in all our cases: clumsiness, awkwardness, abruptness of movements, many superfluous movements and synkinesias (cases 1, 2, 3 and 4).

Lack of facial expressiveness and of expressive movements (manneristic (cases 1, 4 and 5)); decreased postural tone (cases 2, 4 and 6); oddities and lack of modulation of speech (cases 1, 2 and 3)...

Regarding the cause of this condition, Sukhareva noted:

In most of our cases environmental causes could be excluded on the basis of a detailed case history: pathogenic factors such as brain pathology, intoxication, or a poor child rearing environment were absent. Furthermore, the symptoms had been persistently present since early childhood... Our observations force us to conclude 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. At present we can only speculate about the possible biological/pathogenetic substrate of this disorder. The explanation that best fits the clinical phenomena is that schizoid personality disorder arises on the basis of an inborn deficiency of those systems which are also affected in schizophrenia (but that in the latter condition other, additional, influences are at play).

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.

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.

1929-1934

In 1929, German psychiatrist Erich Rudolf Jaensch (of the University of Marburg) published his book Grundformen menschlichen Seins (Basic forms of human existence). Its explanation of personality would become influential.

In 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 nine diagnostic criteria for schizophrenia which Leo Kanner would later see as being important.

In 1934, Soviet psychiatrist Evgenia Grebelskaya-Albatz (Евгения Гребельская-Альбац) of Moscow published a paper in German, dividing people with childhood schizophrenia into two groups, those with normal intelligence, and those with lesser intelligence.

Asperger, Kanner and contemporaries (1937-1949)

1937-September 1938

Austrian psychiatrist Hans Asperger was the head of the Vienna University's Children's Clinic's department of curative teaching.

Austrian-American psychiatrist Leo Kanner was an associate professor of psychiatry at Johns Hopkins Hospital in Baltimore. Kanner was America's pre-eminent child psychiatrist. He had published the first American textbook on the topic in 1935. (While many sources say he published the first English-language book of that kind, Kanner himself credits this to William Ireland).

One of the psychiatrists working for Asperger was George Frankl. As a Jew, Frankl was in danger from his country's Nazi regime. So he left Vienna in 1937, and went to work with his friend Kanner in Baltimore.

In 1937, Swiss psychiatrist Jakob Lutz of the 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 in 1938. Lutz visited Kanner's department at Johns Hopkins in early 1938.

In December 1937, British psychologist 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 shortly afterward.

October 1938

Hans Asperger was the first to use the name "autism" for a specific condition, and the first to document many of its attributes.

Hans Asperger used the term autistic psychopath 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:

[All abnormal symptoms can be derived from the disturbance of the instinctive functions: the disturbance of the understanding of the situation and the disturbance of relationships with other people; from this we understand the lack of respect for authority, the lack of disciplinary understanding at all; but we also understand the fact that nobody really likes these people, we understand the heartless wickedness.

Equivalent to this lack of instinct is not only the clumsiness in pure motor skills; but also the poor practical understanding, the success of practice that is so difficult to achieve, the "difficult mechanization."

After what has been said, it is not surprising that these children are always loners, falling out of any children's community: they themselves do not strive for any community, since they have no personal relationships with anyone (they never have a friend either), and the community also rejects them, since they are always a foreign body; but because of their peculiarities, especially because of their clumsiness, they are always an object of unanimous ridicule in the community, for which they know how to take revenge often enough.

But one thing is very often not only not disturbed in these severely constricted personalities, as in this boy, but is actually well developed above average, namely the intelligence in the narrower sense, the ability to think logically, to formulate one's thoughts well in language (they often find particularly original, almost linguistically creative expressions); very often astonishingly mature special interests are present, often really scientific (e.g. natural research) or technical interests, which of course are often quite cranky and eccentric.]

He also spoke to the broad range of people he considered as having "autism":

[On the one hand, the originality of thinking (which always includes a bit of "autism"!) or the intensity of the special interests, which are apparently "hypertrophied" at the expense of many other abilities, are so in the foreground that such people are able to achieve top performance (who does not know the autistic researcher who has become a comic-strip character because of his clumsiness and lack of instinct, but who can achieve excellent things or at least advance his often very narrow special field!) At other times, the autistic originality only comes across as absurd, cranky and useless.]

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.

1941-1942

American psychiatrist Charles Bradley of the Emma Pendleton Bradley Home, published the book Schizophrenia in Childhood in 1941, which described what is today considered autism. He cited many other early researchers on the topic, including Sukhareva.

In 1942, American psychiatrist Lauretta Bender of Johns Hopkins Hospital 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."

April 1943

Leo Kanner greatly increased awareness of childhood autism in the United States and other countries.

After further research, Kanner published the April 1943 paper Autistic Disturbances of Affective Contact. It includes case studies of eleven children and their families who have particular things in common. Kanner didn't give this commonality a specific name. He summarises:

The combination of extreme autism, obsessiveness, stereotypy, and echolalia brings the total picture into relationship with some of the basic schizophrenic phenomena... But in spite of the remarkable similarities, the condition differs in many respects from all other known instances of childhood schizophrenia...

All of the children's activities and utterances are governed rigidly and consistently by the powerful desire for aloneness and sameness...

Between the ages of 6 and 8 years, the children begin to play in a group, still never with the other members of the play group, but at least on the periphery alongside the group. Reading skill is acquired quickly, but the children read monotonously, and a story or moving picture is experienced in unrelated portions rather than in its coherent totality...

It is not easy to evaluate the fact that all of our patients have come of highly intelligent parents...

One other fact stands out prominently. In the whole group, there are few really warmhearted fathers and mothers. For the most part, the parents, grandparents, and collaterals are persons strongly preoccupied with abstractions of a scientific, literary, or artistic nature, and limited in genuine interest in people.

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:

We must, then, assume that these children have come into the world with innate inability to form the usual, biologically provided affective contact with people, just as other children come into the world with innate physical or intellectual hand[i]caps.

The term "Kanner's syndrome" was later coined to describe the children's condition, in particular to distinguish them from differing symptoms of Asperger's children. This syndrome has also sometimes been known as "classic autism".

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.

June 1944

Hans Asperger did further research, and in June 1944 published the paper Die „Autistischen Psychopathen” im Kindesalter (The "Autistic Psychopaths" in Childhood), which included four cases studies and related analysis. This work offered by far the most detailed description of autism as yet published.

Asperger notes:

[If one has learned to pay attention to the characteristic expressions of the autistic nature, one finds this psychopathic disorder, especially in a milder degree, not so rare, even in children...

...the individual personalities [of autistic people] stand out from one another not only through the degree of the contact disorder, through the level of intellectual and character strengths, but also through numerous individual traits, special ways of reacting, and special interests (which are particularly independent and different within this group of people)...

The difficulties which the young child has in learning the simple skills of practical life and in social adjustment come from the same disorder which causes the learning and behavioural difficulties of the school child, which causes the professional difficulties and the special achievements of the adolescent, and which speaks to the adult's marital and social conflicts...

Unfortunately, not in all cases, not even in most cases, does the positive, future-oriented traits of the autistic personality prevail. We have already talked about the fact that there are autistic characters of very different personality levels: from an originality bordering on genius to unrealistic, insular, inefficient oddballs to the most severely contact-disordered, automaton-like imbeciles...

With the cleverest of them, the teachers sometimes overlook the poorer performance in the mechanizable learning requirements because of their other achievements, because of their clever answers. Most of the time, however, the teacher is in despair over the agonizing trouble that arises for both parts from this disruption in the way they work...

We want to show that the basic disorder of autistic psychopaths is a narrowing of their relationships with the environment, that the personality of these children can be understood from this point of view, that it is "thoroughly organized" from that point of view...

Very differentiated likes and dislikes in the area of the sense of taste are almost regularly found - the frequent occurrence in the same direction is more proof for us of the unity of our type... Many of these children have an aversion to certain tactile sensations, which goes to abnormal degrees...

Either [autistic children] don't notice the things around them at all, for example they don't care about toys at all, or they have an absurdly strong attachment to certain individual things, never take their eyes off a whip, a block of wood, a mere rudimentary doll, can't eat, can't go to sleep if the "fetish" isn't with them, make the most difficult scenes trying to snatch the thing they've held so passionately from them...

That one has to keep oneself clean and in addition meet the numerous requirements of personal hygiene can only be taught to them with great difficulty, often not at all completely - even the adults, who then have mostly chosen intellectual professions, can walk around unwashed and unkept...

The autistic psychopath is an extreme variant of male intelligence, male character. Typical differences between boys' and girls' intelligence can already be found within the normal range of variation: girls are generally the better learners, they are good at concrete, descriptive, practical, clean, eager work; on the other hand, logic, the ability for abstraction, the precise thinking and formulating, that independent research is much more in the possibilities of the boys...

While, as already mentioned, we have not met any girl in whom the image of the autistic psychopath has been fully developed, we have met several mothers of autistic children who were themselves markedly autistic in their behaviour...

The steadfastness and the power that lies in the "spontaneous" activity of the autistic, the narrowing down to individual areas of life, to an isolated special interest - this proves to be a positive value that enables these people to achieve special achievements in their areas. Especially with the autistic we see - with far greater clarity than with the "Normals" - that they seem predestined for a certain profession from their earliest youth, that this profession grows out of their special talents as a result of fate.]

In regards to his work's academic antecedents, Asperger frequently acknowledges Bleuler, and also:

[There are certain similarities between the autistic psychopaths and the schizothyms of Kretschmer, further with certain forms of the disintegrated by E. R. Jaensch and above all with the "introverted thinking type" by Jung.]

(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 English-speaking psychological professionals until the 1970s. It would take yet longer for substantial numbers of the English-speaking people it describes to hear about it.

September 1944

In September 1944, Kanner published the paper Early Infantile Autism, giving his newly identified condition a specific 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:

During the past six years, I have become increasingly interested in a number of children, twenty by now, whose behavior differs uniquely and markedly from anything reported so far. Among the individual patients there are great variations in the degree of the disturbance, in the manifestation of specific features, and in the step-by-step development in the course of time. Yet in spite of this seeming divergence they all present essential common characteristics to such an extent that they cannot but be considered as fundamentally alike from the point of view of psychopathology. Many of these children were brought to us primarily with the assumption that they were severely feeble-minded or with the question of auditory impairment. Psychometric test performances yielded indeed very low quotients, and often enough absent or inadequate responses to sounds of any kind gave good reason for the suspicion of deafness. But careful examination showed very soon that the children's cognitive potentialities were only masked by the basic affective disorder; in fact, a few of the children had started out by amazing their parents with phenomenal feats of rote repetition. In all instances it could be established that hearing as such was not defective.

The common denominator in all these patients is their disability to relate themselves in the ordinary way to people and situations from the beginning of life. Their parents referred to them as always having been "self-sufficient," "like in a shell," "happiest when left alone," "acting as if people weren't there," "giving the impression of silent wisdom." The ease histories indicate invariably the presence from the start of extreme autistic aloneness which, wherever possible, disregards, ignores, shuts out anything that comes to the child from the outside...

An excellent rote memory, retaining many poems, songs, lists of presidents, and the like, made the parents at first think of the children proudly as child prodigies...

The same type of literalness exists also with regard to prepositions.

Alfred, when asked, "What is this picture about?" replied: "People are moving about..."

The child's behavior is governed by an anxiously obsessive desire for the maintenance of sameness that nobody but the child himself may disrupt on rare occasions. Changes of routine, of furniture arrangement, of a pattern, of the order in which everyday acts are carried out can drive him to despair...

Every one of the twenty children has a good relation to objects; he is interested in them; he can play with them happily for hours. The children's relation to people is altogether different. Every one of the children upon entering the office immediately went after blocks, toys, or other objects without paying the least attention to the persons present.

Kanner's two papers became very influential in the English-speaking world, the Americas and elsewhere.

April 1948

The newly formed United Nations established the World Health Organization (WHO) on 7 April 1948. 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 1975.

July 1949

Kanner published a third autism paper in 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 "Ssucharewa [Grunya Sukhareva], [Evgenia] Grebelskaya-Albatz, and [Juliette Louise] Despert."

The paper also says much about the personality type of the parents of autistic children, including:

One is struck again and again by what I should like to call a mechanization of human relationships. Most of the parents declare outright that they are not comfortable in the company of people; they prefer reading, writing, painting, making music, or just “thinking.” Those who speak of themselves as sociable tend to qualify this by explaining that they have no use for ordinary chatter. They are, on the whole, polite and dignified people who are impressed by seriousness and disdainful of anything that smacks of frivolity.

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."

1950s to 1970s

The 1950s

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". This included children who would today be diagnosed with autism, ADHD and other conditions. The school helped establish a new method of teaching, lead 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 would establish the "League School of Boston.")

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):

Here will be classified those schizophrenic reactions occurring before puberty. The clinical picture may differ from schizophrenic reactions occurring in other age periods because of the immaturity and plasticity of the patient at the time of onset of the reaction. Psychotic reactions in children, manifesting primarily autism, will be classified here. Special symptomatology may be added to the diagnosis as manifestations.

(The term "schizophrenia" was defined elsewhere in the manual. "It represents a group of psychotic reactions characterized by fundamental disturbances in reality relationships and concept formations, with affective, behavioral, and intellectual disturbances in varying degrees and mixtures. The disorders are marked by strong tendency to retreat from reality, by emotional disharmony, unpredictable disturbances in stream of thought, regressive behavior, and in some, by a tendency to "deterioration."")

The other was "Schizoid personality" (000-x42):

Inherent traits in such personalities are (1) avoidance of close relations with others, (2) inability to express directly hostility or even ordinary aggressive feelings, and (3) autistic thinking. These qualities result early in coldness, aloofness, emotional detachment, fearfulness, avoidance of competition, and day dreams revolving around the need for omnipotence. As children, they are usually quiet, shy, obedient, sensitive and rearing. At puberty, they frequently become more withdrawn, then manifesting the aggregate of personality traits known as introversion, namely, quietness, seclusiveness, "shut-in-ness," and unsociability, often with eccentricity.

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 rejected the theory.

Charles Ferster was a pioneer of what would become known as applied behavior analysis.

Kanner's 1956 paper

In 1956, Kanner and fellow John Hopkins researcher Leon Eisenberg published the paper Early infantile autism, 1943-1955. Providing his most concise definition of the condition yet published, the paper says:

In the light of experience with a tenfold increase in clinical material, we would now isolate these two pathognomonic features, both of which must be present: extreme self-isolation and the obsessive insistence on the preservation of sameness, features that may be regarded as primary, employing the term as Bleuler did in grouping the symptoms of schizophrenia. The vicissitudes of language development, often the most striking and challenging of the presenting phenomena, may be seen as derivatives of the basic disturbance in human relatedness.

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."

Charles Ferster

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.

The 1960s

The UK

Until 1961, autistic children in the UK were often institutionalised from a young age. Poor disease control in these institutions often lead 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 and others to define the symptoms of childhood psychosis/schizophrenia. They came up with a nine-point definition that was widely used in that country. 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.

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.) In 1965, it set up "The Society School for Autistic Children," which was later named after Elgar. As of 2023, the Society operates seven schools across England.

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.

Representative organisation "Scottish Autism" began in 1968, and continues independently today.

Gerhard Bosch

In 1962, German psychiatrist Gerhard Bosch published the book Der Frühkindliche Autismus: Eine Klinische und Phänomenologisch-Anthropologische Untersuchung am Leitfaden der Sprache. Among other things, it briefly compared the work of Asperger and Kanner. In 1965, Kanner said he had read this book. Bruno Bettleheim cited it substantially. The book would be translated into English in 1970.

The USA

Rosemary Kennedy, sister of US President John F Kennedy, had autism. Her sister Eunice Kennedy Shriver made the public aware of this through an article in the New York Post in 1962.

In the United States, the 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.

Bernard Rimland refuted the refrigerator mother theory and co-founded the Autism Society of America.

In 1964, American psychologist 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 forward 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".)

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 lead 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 it's 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.

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.

New organisations in many countries

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 Sésame Autisme (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 Autism Society Japan (日本自閉症協会).

Michael Rutter

British child psychiatrist Michael Rutter's extensive research in the 1960s provided statistically robust evidence that the syndrome of "early infantile autism" existed. He also proved the genetic basis of the condition, and that family members of those affected had a lesser version of it.

Asperger's 1968 paper

In 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:

[As different as both types are in their intellectual and personality level, there is an astonishing similarity in central features as well as in small details; it was undoubtedly these that made both authors independently choose the same name to express the nature of the disorder.]

Highlighting his broad use of the term "autism", he also remarked:

[Yes, it seems to us that a dash of “autism” is absolutely necessary for certain top scientific or artistic achievements: a certain turning away from the concrete, simple and practical; a narrowing down to a specific, dynamically and highly original special field, sometimes to the point of eccentricity; a narrowing or abnormality of emotional relationships with other people.]

Applied behavior anaylsis

From the late 1950s, Charles 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 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. (Two major American professional associations would later be founded for ABA practiconers, with the credentialing "Behavior Analysis Accrediting Board" founded in 1998.)

DSM-II

In the DSM-II (1968), the symptom of autism was allocated to three different conditions. Its description of childhood schizophrenia was more detailed than in the DSM-I.

Schizophrenia, childhood type (295.8):

This category is for cases in which schizophrenic symptoms appear before puberty. The condition may be manifested by autistic, atypical, and withdrawn behavior; failure to develop identity separate from the mother's; and general unevenness, gross immaturity and inadequacy in development. These developmental defects may result in mental retardation, which should also be diagnosed. (This category is for use in the United States and does not appear in ICD-8. It is equivalent to "Schizophrenic reaction, childhood type" in DSM-I.)

Withdrawing reaction of childhood (or adolescence) (308.1):

This disorder is characterized by seclusiveness, detachment, sensitivity, shyness, timidity, and general inability to form close interpersonal relationships. This diagnosis should be reserved for those who cannot be classified as having Schizophrenia (q.v.) and whose tendencies toward withdrawal have not yet stabilized enough to justify the diagnosis of Schizoid personality (q.v.).)

Schizoid personality (301.2):

This behavior pattern manifests shyness, over-sensitivity, seclusiveness, avoidance of close or competitive relationships, and often eccentricity. Autistic thinking without loss of capacity to recognize reality is common, as is daydreaming and the inability to express hostility and ordinary aggressive feelings. These patients react to disturbing experiences and conflicts with apparent detachment.

The 1970s

1970-1974

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, L’Associazione Italiana per l’Assistenza ai Bambini Autistici (AIABA, "The Italian Association for Assistance to Autistic Children") was founded by parents of children with autism in 1970.

In Germany, what is now Autismus Deutschland ("Autism Germany") was founded in 1970.

1970 also 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.

The Journal of Autism and Childhood Schizophrenia was established in January 1971, with Leo Kanner as the editor. 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.

Another paper in the first edition however compares Kanner's syndrome (early infantile autism) with Asperger's syndrome (autistic psychosis).

It notes:

We can take it for granted that neither [Kanner and Asperger] was then aware of the other's work. It took nine years before the first case of "early infantile autism" was published in Europe...

Kanner's publications are well known internationally. I doubt sincerely whether this can be said about Asperger's work.

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. He concludes:

This 30-year followup has not indicated too much concrete progress from the time of the original report, beyond the refinement of diagnostic criteria. There has been a hodge-podge of theories, hypotheses, and speculations, and there have been many valiant, well-motivated attempts at alleviation awaiting eventual evaluation. It is expected, with good justification, that a next 30- or 20-year followup of other groups of autistic children will be able to present a report of newly obtained factual knowledge and material for a more hopeful prognosis than the present chronicle has proved to be.

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 forward.

American child 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 Isreal Kolvin provided much evidence that "early infantile autism" was a very different condition to later onset schizophrenia through two studies published in 1971.

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.

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.)

Leo Kanner published the book Childhood psychosis: initial studies and new insights in 1973, which reviewed 40 years of research into early infantile autism and childhood schizophrenia. It it he bemoaned the diagnosing of intellectually disabled children with a few autistic features as singularly having autism.

Eric Schopler would become the second editor of the Journal of Autism and Childhood Schizophrenia in 1974, staying in that role until 1997.

"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.

1975-1979

The international medical condition classification system, the ICD, greatly changed the way it categorised autism-related conditions in 1975, 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". In the category of "disturbance of emotions specific to childhood and adolescence", there was now "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".

The United States passed the Education for All Handicapped Children Act (EHA) in November 1975. 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).

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.

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, 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.

Autism Society Canada was established in 1976.

Lorna Wing used the term "Asperger's syndrome" in 1976, identifying that there were many people with autistic traits who had good language skills.

Considering the wide difference of autistic traits in different people, Wing and Judith Gould coined the term "autism spectrum" in their 1979 paper Severe impairments of social interaction and associated abnormalities in children: epidemiology and classification.

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.

The opioid excess theory hypothesis of autism was first proposed by Jaak Panksepp in a 1979 paper.

DSM-III, pervasive developmental disorder and other conditions (1980-1987)

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."

"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.

Lorna Wing's February 1981 publication of a series of case studies (Asperger's Syndrome: A Clinical Account), greatly increased awareness of the existence of normal and high IQ people with autistic traits by clinicians. This paper also greatly increased awareness of Hans Asperger's work in the anglosphere and beyond. It brought the concept of "Asperger's Syndrome" into the spotlight, leading to it being recognised by many psychological practitioners.

The Early Start Denver Model of autism treatment for young children was developed in 1981 by 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.

Autism-Europe began in 1983, co-ordinating autism organisations across Europe.

In Brazil, Associação de Amigos do Autista" (AMA, "Association of Friends of the Autistic") was founded in 1983. Within a year of this, they were running a school. They are their country's main autism association.

The US congress endorsed "Autism Awareness Month" in 1984.

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.

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 and Lynn Koegel in 1987. It is a form of ABA used with young children.

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.

DSM-III-R, autistic disorder, PDD-NOS and other conditions (1987–1994)

1987-1991

The DSM-III-R (1987) merged "infantile autism” and "childhood onset pervasive developmental disorder" as the new “autistic disorder”. It 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 in this manual, suggest that PDDNOS is more common than Autistic Disorder in the general population."

1987 saw America's "National Association for Autistic Children" became the "Autism Society of America."

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.

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.

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.

A new national French autism organisation, Autisme France, was founded in February 1989.

Representative organisation "Autism South Africa" (A;SA) was founded in 1989 by concerned parents and professionals.

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.

Mind-blindness is a term first published in 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. The book Mindblindness: An Essay on Autism and Theory of Mind was released in 1995.

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.

In India, Action for Autism (AFA) began in 1991 as a parent support group. It soon became India's foremost autism organisation.

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".

Giacomo Rizzolatti led the team that discovered mirror neurons.

1992-1993

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 is an important difference between people with and without autism, though the connection is currently considered tentative.

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, an organization that publishes newsletters "written by and for autistic people." This grew into the autism rights movement.

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.

Leadership of the TEACCH Autism Program passed from Eric Schopler to American psychologist Gary Mesibov in 1992. (Mesibov would subsequently follow Schopler as editor of the Journal of Autism and Developmental Disorders from 1997 to 2007).

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 categories 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 (1994-2013)

1994-1999

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 within it to have speech and language difficulties.

Schizoid personality disorder and avoidant personality disorder remained. "Elective mutism" became "selective mutism".

American psychiatrist Fred Volkmar was the lead author of the autism section. (From 2007, Volkmar would later be the fourth editor of the Journal of Autism and Developmental Disorders).

Temple Grandin became a prominent example of a person with autism.

The Korean Autism Society ("한국자폐학회") was founded in South Korea in 1994. It has focused on professionals who treat those with the condition.

American animal behaviourist Temple Grandin came to prominence in 1995, with the publishing of her popular book Thinking in Pictures: My Life with Autism. She would later become a board member of the Autism Society of America.

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.

In 1996, British child psychiatrist Sula Wolff translated and published Grunya Sukhareva's 1925 paper, starting the process of increasing awareness of Sukhareva's work in the West.

"Yayasan Autisme Indonesia" (Indonesian Autism Foundation) was founded in by five doctors and eight parents of people with autism in 1997.

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.

The term "neurodiversity" was coined in 1998 by Australian sociologist Judy Singer and American self-advocate Jane Meyerdin. Neurodiversity is the idea that people can think differently to the norm without those differences being a medical problem.

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.

Also in 1998, British doctor Andrew Wakefield published a controversial paper claiming a link between some vaccines and autism. It was subsequently found to be fraudulent.

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 1998 Hollywood action movie Mercury Rising featured a boy with autism.

The developmental social-pragmatic (DSP) model of autism treatment 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.

Pretending to Be Normal: Living with Asperger's Syndrome was an autobiography published by American researcher Liane Holliday Willey in 1999. 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. She has been said to have coined the term "Aspie" (for someone with Asperger syndrome) in 1999.

2000-2004

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.

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 and/or autism in the Israeli Defense Forces.

Relationship Development Intervention was developed by American psychologist Steven Gutstein in the 1990s. It became better known after the publishing of books on the topic in 2002.

The empathising–systemising theory of autism was developed by Simon Baron-Cohen in 2002. He and others would go on to develop it in subsequent years.

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 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.

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.

In 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 don't.

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.

The British fiction book The Curious Incident of the Dog in the Night-Time was published in 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.

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.

2005-2009

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.

The Korea Autism Love Association ("한국자폐인사랑협회는") was founded in South Korea in January 2006. It has focused on representing people with autism and their parents.

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.

Simon Baron-Cohen and others made an animated series for autistic pre-schoolers called The Transporters in 2006. Its creators claimed that autistic children could learn to read emotions as well as non-autistic children after repeated viewing. The series was nominated for a BAFTA.

The documentary feature Normal People Scare Me: A Film About Autism was produced by American actor Joey Travolta in 2006.

The SCERTS Model: A Comprehensive Educational Approach for Children with Autism Spectrum Disorders was published in 2006 by five American authors. The model continues to be developed.

World Autism Awareness Day was established by the United Nations in 2007. Lighting buildings with blue light at night is a common means of awareness raising on this day. Autism Speaks has embraced it.

The character Sheldon Cooper first appeared on American television in 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.

2007 also saw the publishing of The Reason I Jump, a popular 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.

Another popular book of 2007 was Look Me in the Eye: My Life with Asperger's by John Elder Robison. Robison would later become a board member of Autism Speaks.

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.

The US state of South Carolina enacted Ryan's Law in 2008. This requires health insurers to provide up to $50,000 of behavioral therapy each year for people with autism aged 16 and younger.

The notable book No More Meltdowns was published by American Jed Baker in 2008. This and his other works were substantially influential on Ontario autism support workers in 2011.

The imprinted brain hypothesis of autism was first presented by Bernard Crespi and Christopher Badcock in 2008.

The soap opera Aapki Antara had it's original airing in India during 2009-10. The title character of the series is a girl with autism.

2010-2013

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.

A movie about, and named after prominent autistic person Temple Grandin was released in February 2010.

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.

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.

The first edition of Revista Autismo ("Autism Magazine") was published in Brazil in September 2010.

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.

The concept of the double empathy problem was conceived in 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 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 2012. It would win 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.

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.

DSM-5 and autistic spectrum disorder (2013-today)

2013-2017

In May 2013, the DSM-5 was released. It combined "autistic disorder," "Asperger's syndrome", "CDD" and "PDD-NOS" into the broader concept of "autism spectrum disorder" (ASD), and discontinued the three 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.

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."

"Schizoid personality disorder", "avoidant personality disorder" and "selective mutism" remained.

The TV series Good Doctor "굿 닥터", featuring an autistic doctor, began on South Korean TV in August 2013. (An American version would first air in 2017, and a Japanese one in 2018).

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. This later evolved into the similar MSSNG project. MSSNG aims to "provide the best resources to enable the identification of many subtypes of autism."

In the UK, April 2014 saw the BBC broadcast an episode of Horizon entitled Living with Autism, featuring Uta Frith.

Bestselling book NeuroTribes: The Legacy of Autism and the Future of Neurodiversity was published by American writer Steve Silberman in 2015.

The American feature documentary Autism in Love was also released cinematically in 2015, and later aired in the US on PBS.

In 2015, representative body "Autism Canada" was created through the merger of Autism Society Canada and Autism Canada Foundation.

Brazilian researcher Alysson Muotri and others founded the company Tismoo in 2015, which aims to develop genetic treatments for autism and other conditions.

The Accountant was a 2016 American feature film, starring Ben Affleck as an autistic accountant.

The book In a Different Key: The Story of Autism by John Donvan and Caren Zucker was released in 2016. The authors found and interviewed the patient Leo Kanner first recognised as having autism, Donald Triplett. It was nominated for the 2017 Pulitzer Prize for General Nonfiction.

2016 saw Australia's main state-based and other autism representative organisations group together as the "Australian Autism Alliance."

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.

Two substantive autistic characters featured on American television from 2017. The title character of new program The Good Doctor was a young man with autism. Also, a four-year-old autistic girl Muppet named Julia joined the main Sesame Street show, with the assistance of ASAN. These programs subsequently circulated elsewhere.

In March 2017, the Russian peak parents-of-autistic-children representative body "Autism Regions" ("Аутизм Регионы") was founded.

2018-today

Australian documentary TV series Love on the Spectrum first aired in 2019. An American version, which featured Jennifer Cook, was launched in 2022.

Australia's National Disability Insurance Scheme went into full operation in 2020. It provides many autistic people in that country with money to help them live fuller lives.

The five volume Encyclopedia of Autism Spectrum Disorders was published in 2020. Fred Volkmar was the Editor-in-Chief.

In April 2021, the American "Autism Awareness Month" became "Autism Acceptance Month."

In the UK, the BBC broadcast the documentary Paddy And Christine McGuinness: Our Family And Autism in December 2021.

2022 saw the first 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, including "Autism spectrum disorder without disorder of intellectual development and with mild or no impairment of functional language" (6A02.0), an equivalent to Asperger syndrome. The ICD-11 included much more detailed descriptions of conditions than its predictors.

Autistic individuals bypass nonverbal cues and emotional sharing that they find difficult to deal with, and 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 and the destigmatization of childhood ASD have affected how ASD is viewed, 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.