As part of our series marking World Autism Month 2023, Dr Linda O’Rourke explores the origin of the terminology around autism throughout medical literature, tracing a path to the more inclusive and person-centred language we use today.
Although the word autism as we understand it today dates from only 1943, when we look down through the literature there are historical references to the condition using both different terms and the term autism itself.
The first references to autism can be found in the Middle-Ages. Medieval folklore described ‘changeling children’; beautiful, elf-like creatures left in the place of human babies by fairies and trolls who wished for their offspring to be reared by human parents. At the time, changeling children described infants with unexplained intellectual or physical disability. We now know that early accounts of changeling children also list many features consistent with Autism.
Henry Maudsley described patterns of childhood behaviour consistent with autism which he termed childhood insanity in 1867. Other authors coined such terms as ‘dementia precocissima’, ‘dementia precocissima catatonica’, ‘primitive catatonic psychosis of idiocy’, ‘symbiotic psychosis’ and ‘childhood psychosis’ to describe both autism and childhood-onset schizophrenia.
The term ‘autism’ was first used in medical nomenclature by Swiss psychiatrist Eugen Bleuler to describe a tendency towards social withdrawal and progressive loss of communication seen in adult schizophrenia praecox.
In 1943, Leo Kanner used the term ‘autism’ in the way we use the term today. Kanner published a series of case studies of children with social, communication and behavioural difficulties and duplicated the term. This erroneously led to autism being considered an early onset variant of schizophrenia for many decades until, after much research and debate, it was recognised as a condition in its own right in 1980.
Kanner described a distinctive pattern he called ‘inborn autistic disturbances of affective contact’ in eleven children under the age of twelve years. Kanner outlined the presenting complaint, family histories, clinical observations and treatment outcomes of eight boys and three girls, concluding their diagnoses to be ‘early infantile autism’. Kanner noted ten common criteria among the eleven children which he suggested could be used by other clinicians to assess their patients. Kanner published widely on the condition which led to it gaining recognition within the academic and scientific communities.
Hans Asperger also described autism in the 1940s, using the term ‘autistic psychopathy’ referring to four boys under his care in the University Children’s Hospital in Vienna. His criteria were very similar but slightly different to Kanner’s. Asperger described normal timing of speech development but pedantic and often stereotyped content with difficulty using pronouns alongside impaired communication, repetitive activities and resistance to change. Further differences were Kanner’s focus on children while Asperger included adults. Kanner was further unsure as to the IQ range associated with ‘early infantile autism’ while Asperger’s patients all had normal range intelligence.
Steve Silberman, a scientific journalist with Wired Magazine has an interesting theory relating to the close timing of Kanner (1943) and Asperger’s (1944) publications. Silberman noticed that Asperger worked closely with a Jewish physician George Frankl in the Children’s Clinic at the University Children’s Hospital in Vienna in the 1930s. After Austria was annexed by German troops, a physician of the same name is listed as a staff member at the Child’s Study Home in Maryland. Silberman hypothesised that Frankl fled Nazi-occupied Austria to live in the United States bringing knowledge of the clinical presentation of Asperger’s autistic psychopathy to the Maryland Clinic.
In the mid-1900s, Kanner was more widely credited with describing Autism than Hans Asperger and it was not until 1981, when Asperger’s work was revisited and revised by Dr Lorna Wing, that his findings became accessible to the general scientific community. Asperger’s 1944 article, originally published only in German, was translated by Professor Uta Firth in her book Autism and Asperger Syndrome in 1991.
Dr Lorna Wing is now credited with outlining the ‘triad of impairments’ in her work with Judith Gould, broadening the concept of Kanner’s autism and borrowing from Asperger’s autistic psychopathy. She also strongly suggested Asperger’s ‘autistic psychopathy’ be renamed ‘Asperger’s syndrome’ due to the use of ‘psychopathy’ at the time to reflect sociopathic tendencies. Her proposed switch in diagnostic terminology was accepted by the medical profession and adopted into the medical nomenclature quite quickly.
From the 1980s up to 2013, the term Pervasive Developmental Disorder was used to capture the prevailing opinion that Autism was a wide variety of different conditions which could be grouped under an umbrella term. This included childhood autism, atypical autism, Rett syndrome and Asperger syndrome. We now know that this array of conditions can be redefined as autism with different associated co-morbidities. For example, autism with speech delay, autism as part of a genetic condition or autism without an intellectual disability. This led to great simplification of the diagnostic criteria in both ICD-11 and DSM 5 and progression to the term autism spectrum disorder.
Today, we have moved further along this path by joining the autism community in their quest to use person-first language in relation to autism. We all recognise that autism is not an illness or a form of pathology with a treatment plan and therefore we no longer speak of our patients as a person with autism, we speak of them as our autistic patients.
In the College of Psychiatrists of Ireland Autism Special Interest Group, we are very fortunately to have an autistic member as one of our founding members. We often avail of his experience and expertise to ensure the appropriate use of language because, as Desmond Tutu said,
Language is very powerful. Language does not just describe reality. Language creates the reality it describes.