Autism has a long past, but a short history. The story of autism begins with legends and tales of children being left by elves in return for stolen. In real history already in the 18th century medical texts are known, containing descriptions of people who are likely to suffer from autism (although the term was not used yet) – they did not talk, were excessively closed and had unusually good memory.
Scientist of the previous centuries who approached the problem of people with autism the most was French explorer J.M. Itar, who described this state on the example of a 12-year-old boy Victor, who lived in the forests of Aveyron ("wild boy of Aveyron"). He called it an intellectual mutism, thus highlighting one of its main features – absence or delay of speech development in intact intellect.
In his work on mutism caused by the defeat of intellectual functions in 1828, he summarized the results of his 28 years of research at the Institute of Sur-Moe (Paris). Here scientist described his attempts to rehabilitate Victor – Wild Boy of Aveyron. Itar made a careful study of the level of attention, memory and simulation capabilities of such children, and came to the conclusion that children with intellectual mutism are asocial, experiencing great difficulties in establishing friendships with peers, using adults as tools to meet their needs, showing significant impairments in development of speech and language (especially usage of personal pronouns). Afterwards, the French scientist described his method of diagnosis and correction of such children to identify opportunities for the child to restore speech and learning. Itar proposed to separate such children from those suffering from mental retardation and idiocy. Unfortunately, the work of French researcher did not attract much attention of his colleagues (Scott & De Barona, 2007).
In 1911, Swiss psychiatrist Bleuler published the work on early dementia or schizophrenia group, in which he described the special quality of early symptoms of dementia: dissociation, segregation, splitting, and labeled them with a new term that has survived to the present time – schizophrenia. In the same paper Bleuler coined the term autism to describe the clinical picture of schizophrenia, namely the life of a schizophrenic patient in a fantasy world.
Descriptions of people with a strange kind of behavior and perception of reality we can also find in imaginative literature. Thus, the American writer John Steinbeck brilliantly portrayed verbal autist in one of the main characters of the novel "Of Mice and Men" (1937), without naming it as such. The first description of autism as a syndrome was given by the American child psychiatrist Leo Kanner in his article "Autism spectrum disorders of affective contact," published in 1943.
L. Kanner described the characteristics common for 11 children he observed from 1938 to 1943. They showed similarities, the main of which being as follows: excessive isolation, secretiveness, avoiding any contact with people, abnormality of speech development and the need for multiple repetitions of the same actions and monotony. Beginning of the manifestation of these features was already marked within the first year of life, which is why Kanner concluded that these children were in a state, which was strikingly different from the conditions described previously and suffered from the syndrome, which he called early infantile autism (EIA). Some professionals today use the term EIA, which is wrong, as today it is known that autistic children grow into autistic adults and early infantile autism diagnosis in relation to, say, 40-year-old man sounds at least ridiculous. The term EIA was normal for the 1940s – 1950s, when neither Kanner, nor other researchers could predict the future of these children, not having data on the causes, symptoms, types of autism (Scott & De Barona, 2007).
Therefore, Kanner was the first who insisted that children that he described represent a unique subgroup of a large troupe of children who were diagnosed in the past with childhood schizophrenia. He insisted that the children whom he diagnosed with EIA were so much alike in their behavior and speech (if they had any) that they should be treated like children with a unique anomaly of constitutional origin.
It is worth listing the main symptoms marked by Kanner that characterize the syndrome of autism, as they are still well recognized and describe the state of autism in its "classical" form (Feinstein, 2010):
- Inability to make contact with other people. This means that an autistic child has difficulty in communicating with others and shows more interest in inanimate objects than people.
- Delayed speech development. Some autistic children do not begin to speak, while others have a delay in speech development.
- Non-communicative speech. Despite the fact that autistic children may have speech, they experience difficulty in using it for a meaningful communication.
- Delayed echolalia. Repetition of words or phrases through a period.
- Permutation of personal pronouns. Child instead of "I" use "you". For example, mother says, "Do you want a candy?" Child answers, "You want a candy."
- Repetitive and stereotyped game. Usually games of autistic children are limited. They repeat the same action and there is no imagination in the game.
- Desire for uniformity. Their eagerness to preserve continuity in familiar surroundings and daily life.
- Good mechanical memory. Many autistic children exhibit excellent memory (although it is often very selective). It is this feature that convinced Kanner that all autistic children have normal intellect.
- Manifestations start since birth or up to 30 months.
13 years after the publication of this work, in 1956, L. Kanner with L. Eisenberg revised its proposed criteria for diagnosing autism and published the article "Infantile Autism: 1943-1955," which united 5 diagnostic characteristics of autism :
1) a complete lack of affective contact with others;
2) persistent desire to maintain uniformity in the environment and daily activities;
3) attachment to objects, their constant spinning in hands;
4) mutism or speech that is not intended for communication;
5) good cognitive potential, which manifests itself in a great memory or performing screening tests (Reschke-Hernández, 2011).
In the same paper, Kanner and Eisenberg and reduced the number of basic characteristic symptoms needed for diagnosis of autism, to two: 1) lack of affective contact, and 2) repetitive, ritualistic behavior. The authors believed that if these two features are present, the rest of the typical clinical picture of the syndrome will surely manifest with time.
Independently from Kanner, almost at the same time, in 1944, Austrian psychiatrist Hans Asperger described the condition of the anomalous behavior of a group of teenagers, which manifested itself in violation of social interaction and communication, which he called autistic psychopathy. Since Asperger wrote in German during World War II, his work went almost unnoticed. In fact, and Kanner and Asperger described the same condition. Both psychiatrists isolated a group of autism and mentally retarded people with serious disorders of the nervous system, and applied it to children with intact intellect. However, the term autism quickly spread beyond that (Sicile-Kira, 2004).
Descriptions of autism spectrum disorders of personality development of Asperger, and early infantile autism of Kanner contain references to anomalies in the development of sociality. However, Asperger did not note apparent anomalies in the development of speech and understanding the language described by Kanner . Kanner defined autism as a violation of affective contact, whereas Asperger described children who, although characterized by a lack of affective contact, could use normal unemotional speech. Digby Tantam in his publication "Thinking in itself" (Tantam, 1988) identifies a subgroup of autistic people who are social, have a speech, show a special interest in certain aspects, are clumsy, using for them the term Asperger's syndrome. Currently, Kanner's syndrome is generally used in relation to severe cases of autism, and Asperger's syndrome – for high-functioning autists.
In 1959, famous American psychologist Bruno Bettelheim published an article “Joe – Mechanical Boy", in which he described an autistic child, a strange, withdrawn behavior that hides a very gifted clever boy. In this paper, a red thread was the idea that it is the attitude of parent to child that was the cause of his autism.
The book of Bettelheim “Empty Tower: Children with autism and the birth of the self” became widely known in 1967. The author stated that mothers treated their autistic children as bad as the Nazis treated prisoners in the concentration camps, causing in this way feelings of hopelessness, despair and apathy in the kids (or prisoners), and causing them to shy away from contact with reality. In accordance with his theory, Bettelheim saw as a cure of autism isolation of autistic children from their families in special boarding schools and spending time with them in intensive psychotherapy for their withdrawal from the renunciatory state.
Theory Bettelheim accusing parents in autism in children was very popular until the mid 1970s, when new research in this area clearly demonstrated the absurdity and harm of this approach, and the correctness of the first Kanner’s assumption on biophysical causes of autism (Reschke-Hernández, 2011).
Views of Bettelheim are still shared by some professionals in the U.S. and many countries in the Eastern Europe. Sometimes attempts to modify the theory of Bettelheim are taken, keeping, however, the foundation. For example, Niko and Elisabeth Tinbergen claim that autism is caused by rupture of the bonding process between mother and child, the recovery of which is the main treatment. Neither Bettelheim nor his followers provide any conclusive evidence of the correctness of this psychogenic theory of autism, and there is no conclusive evidence that the kind of treatment that they recommend is useful for all people with autism.
Still, it is necessary to say that not all professionals in the field of autism in the 1950s approached the problem as well as Bettelheim. Marian DeMayer in the excellent review of autism research in the 1950s and 60s identified three theories existing at that time, considering the causes of autism:
1) the parents cause this state in their children with their cold, repulsive behavior;
2) autism is caused by some biological factors;
3) a child with a biological predisposition to autism falls into negative atmosphere in the family, created by his parents.
The 1960s were marked by a big change in the understanding of autism: its etiology, diagnosis and treatment (Sicile-Kira, 2004). At first, some analysts have questioned the appropriateness of psychotherapy as the main treatment of autism. Then S.B. Foerster in his famous work "Positive reinforcement and inadequate behavior of autistic children," published in 1961, suggested that many of the anomalies in the behavior and speech of autistic children can be reduced and smoothed through systematic training program of behavior modification. He also noted an interesting observation that even the most bizarre behaviors of autistic children can be a form of communication, and these people can be taught to talk and communicate what they want more adequately. Job He gave impetus to the study of behavior modification approach to autistic children and its application in practice.
In 1960 the first three books written by parents of autistic children appeared: Jacques May, the father of twin boys with autism , "The doctor looks at psychiatry", 1958; Karin Juncker (Sweden) "Child in a glass bowl" (translated into English in 1964); Clara Klayborn Park described her attempts to penetrate into the world by her autistic daughter in "The Siege; the first eight years of life of an autistic child", 1967.
Finally, an American psychologist who, unfortunately for himself and luckily for thousands of other families, found himself the father of an autistic child, in 1964 published a book that shook the world. This father was Bernard Rimland, and his relatively small volume book "Children with autism: The syndrome and its implications for the theory of nervous behavior" (1964) marked a turning point in changing the approach to the problem of autism. It contained a brief review of the world literature on autism and violations close to him, and some much-needed and new ideas about the nature and causes of autism (Feinstein, 2010).
It all started with the fact that a young scientist could not accept the conclusions of the doctors ("hopeless") with respect to his son. He diagnosed his son Mark with autism himself and decided to become an expert in this area to help his son and many other children with similar pathology. Rimland vowed not to rest until the enemy (autism) will be defeated, even if it takes the rest of his life. He read and outlined everything he could get on topics of any linkage with autism. The trail led the young scientist to biochemistry, genetics and neurophysiology. He ordered in libraries copies of works on autism and closely related topics from other countries. By 1962, he studied everything that has ever been published on autism in all languages, except, perhaps, some articles in Japanese, Chinese and Russian, which are not listed in the directory of the National Library of Medicine (Sula Wolff, 2004).
In his book, Rimland hit on professionals who saw the cause of autism in cold parents, and he clearly substantiated his views on autism as an organic brain damage. Some progressive professionals working in the field of autism, and, of course, parents of autistic children around the world enthusiastically embraced this young scientist's work, while many eminent professionals met it with hostility and angrily defended the honor of their uniform, defending the traditional approaches to the problem of autism and autistic children.
At the end of the book placed Rimland diagnostic form E-1, composed on the basis of a questionnaire developed by psychiatrist and psychologist Charles Paulin Betty Spencer (1950), Huntington, West Virginia. A year later, form E -1 was replaced by the updated and corrected version – E-2 form. Rimland suggested that parents fill out this form and send it to him.
Already by this book alone Rimland would have entered the history of autism. But he continued to do everything to help his son and many other children with autism. In November 1965 he founded the National Society for Autistic Children (now – American Society for Autism – ASA), which united parents of autistic children and sensible professionals. Today this society continues to provide assistance and support to autistic children and their families. Founder, Dr. Rimland, now a world-renowned scientist, heads the major Research Institute for Autism (RIA), founded in 1967 as Research Institute of the child's behavior, and is the editor of Autism Research Review International. RIA liaises with tens of thousands of parents and professionals, and has the world's largest data bank of people with autism. Rimland's son, Mark, 40 years old, despite autism, became fine artist, known far beyond the United States.
In December 1965, the first branch of NSAC was established in Cooperstown, NY (founders: mother of an autistic child Sol Block, and Dr. Goodwin). Two months later, another mother's son with autism Ruth Sullivan organized a second branch of NSAC in Albany, New York. Soon there were branches in Washington, DC, and several groups in California. ASA now has more than 215 branches.
Armed with information, parents became experienced teachers of other parents and even professionals. Parents of autistic children created some of the most successful training programs. Since the state at the time refused to take into mainstream schools children with autism, parents of these children founded their own schools. When Amy Ladin Lettik was offered to give her autistic son in Special boarding school as hopeless, she created her own school for Ben and called her Benhaven (New Haven, CT). Jay Nolan Center for Autistic Children in Newhall, California, was organized by parents of autistic children and is named for the autistic son of actor Lloyd Nolan. There are numerous similar instances.
In 1970, two fathers of autistic sons – Victor Winston, publisher, and Herman Preyzer, engineer, founded the "Journal of autism and childhood schizophrenia" (now – "Journal of autism and developmental disorders"), which became an invaluable source of information on Autism and research in this area.
Today there are numerous associations and organizations created to support autistic children and their parents. It is a great result and progress, as it is obvious from the history of autism presented in this paper. Scientists went a long path to understand the nature of autism and how it is possible to make life of such children good and really worth living.
References
Feinstein, A. (2010). A history of autism: Conversations with the pioneers. Wiley. com.
Reschke-Hernández, A. E. (2011). History of music therapy treatment interventions for children with autism. Journal of music therapy, 48(2), 169.
Scott, A., & De Barona, M. S. (2007). History of Autism. The Praeger handbook of special education, 6.
Sicile-Kira, C. (2004). Autism spectrum disorders: the complete guide to understanding autism, Asperger's Syndrome, pervasive developmental disorder, and other ASDs. Penguin.
Sula Wolff FRCP, F. (2004). The history of autism. European Child & Adolescent Psychiatry, 13(4), 201-208.
