The History of Autism Spectrum Disorder

Perhaps you’re the parent of a child recently diagnosed, or you know someone who has been diagnosed with Autism Spectrum Disorder (ASD). Whatever your reasons for wanting to educate yourself on this subject, this post will provide you with a more detailed background on the history of Autism Spectrum Disorder.

What Is Autism Spectrum Disorder

ASD is a neurodevelopmental disorder characterized by difficulties with social interaction and communication, and by restricted and repetitive behaviors. Parents often notice signs during the first three years of their child’s life. There is no cure for ASD, only various treatments. The earlier a child begins treatment, the better their outcome.

Formerly referred to simply as “autism”, this diagnosis is currently known as Autism Spectrum Disorder. This is because there are five different disorders that fall under the term of “autism”, all of which have different symptoms and severities, but are related enough to be categorized together.

To keep our timeline straight, these five individual disorders, including Asperger Syndrome and Pervasive Developmental Disorder Not Otherwise Specified (PDD–NOS), were all combined under the umbrella of ASD in the 2013 edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM–5). See our related post on What is Autism Spectrum Disorder? for a more detailed discussion of this condition.

The Origin of the Term “Autism”

There has been tremendous progress made in the ﬁeld of ASD over the last six decades. While it was once a subject that was rarely discussed in public, we ﬁnd information about ASD all around us today—on television and radio, websites and internet searches, public service announcements (PSAs), and in the views of celebrities sharing their stories.

Political leaders discuss the importance of ASD diagnoses, causes, and possible cures. Federal funding has been earmarked for future research and treatment initiatives that will be instrumental in furthering studies in this ﬁeld in years to come.

The term autism has been used for just over 100 years. It was coined by Eugene Bleuler, a Swiss psychiatrist. He used it to describe the mental illness schizophrenia, which is completely unrelated to ASD.

Autism, or autismus as was written in the original Latin text Bleuler wrote, comes from the Greek word “autos”, meaning “self.” It was meant to describe the “isolated self” that he observed in his patients with schizophrenia. However, the first documented cases of ASD, as we would diagnose them today, go back even farther.

The Discovery of Autism Spectrum Disorder

The earliest, well–documented first case of ASD goes back to a 1747 court case where Hugh Blair of Borgue’s brother petitioned to annul Blair’s marrying his wife to get to Blair’s inheritance. The court documents describing Blair show very strongly that he displayed autistic symptoms.

The next case is that of The Wild Boy of Aveyron, who was a feral child who lived in the wild for seven years and was brought back into society in 1798. Very good notes were taken about this boy and people’s attempts to teach him language and social skills.

Reviewing the notes from this case has led modern–day researchers to believe that the boy had ASD based on his ability to learn to communicate as well as some of his behaviors. There isn’t much history between those first two cases and when Bleuler coined the term in the early 1900s.

The Modern Meaning Of Autism Spectrum Disorder Takes Shape

It wasn’t until 1938 that autism started to take on a more modern meaning and separation from schizophrenia. This evolution came about as a result of the research conducted by Hans Asperger of the Vienna University Hospital on what came to be known as Asperger Syndrome.

Leo Kanner

In 1943, autism became even more defined when Leo Kanner came up with what he termed “early infantile autism” to describe the behavioral similarities he observed in a group of 11 children who were previously thought to have mental retardation. He described some of the behaviors these children shared as “autistic aloneness” and “insistence on sameness.”

He noticed that these children had diﬃculty developing language skills, and did not socially interact with their peers. He also noted that these children engaged in ritualized and repetitive behaviors to the exclusion of other activities.

These children had diﬃculties transitioning between tasks or activities, and did not like changes in their routines or schedules. Some of them experienced regression in their functioning over time, losing skills that had previously been established.

Hans Asperger

Around the same time that Kanner was identifying symptoms of autism, pediatrician Hans Asperger was studying another group of children. These boys and girls were also having problems in social interactions with their peers. Like their counterparts, they exhibited behavioral problems commonly seen in children with autism.

However, this group of children did not have deﬁcits in speech and language formation. In fact, these children often spoke early and frequently. They also did not display deﬁcits in adaptive functioning. In other words, these children could feed themselves, dress themselves, participate in their personal care, and function independently at school and in the community.

Unlike the group that Kanner observed, most of these children did not display lowered cognitive functioning. They were often very bright and showed interest in speciﬁc areas in which they could amass large amounts of information.

Unfortunately, Asperger’s research was not discovered until three decades later. It was reintroduced to the ﬁeld when other individuals interested in studying ASD began questioning the diagnostic criteria that was used at the time.

Between Kanner’s diagnosis in 1943 and the late 1960s, there was much confusion around the term autism, even getting mixed up with terminology like “infantile schizophrenia”.

Then, there was a radical transformation of a central concept in child development in Great Britain. The meaning of the word “autism” experienced a shift in the early 1960s in the UK, which was contemporaneous with a growth in epidemiological and statistical studies in child psychiatry.

Other Pioneers

The work of significant child psychologists and psychoanalysts such as Jean Piaget, Lauretta Bender, Leo Kanner and Elwyn James Anthony used autism as a category to describe hallucinations and unconscious fantasy life in infants.

Theories of autism were then associated with both schizophrenia in adults and with psychoanalytic styles of reasoning. The closure of institutions for so–called “mental defectives” and the growth in speech therapy services in the 1960s and 1970s encouraged new models for understanding autism in infants and children.

Researchers such as Victor Lotter and Michael Rutter used the category of autism to reconceptualize psychological development in infants and children via epidemiological studies. These historical changes have influenced the form and function of later research into ASD and related conditions.

Treatments for ASD used in the 1960s and 1970s consisted of LSD, electric shock, and behavioral changes that focused on pain and punishment. However, from the late 1960s to mid–1970s, autism began to get more attention, research, and definition. But not all of the research was on point.

One example of inaccurate research was conducted by Bruno Bettelheim, who believed that autism was caused by unloving, cold mothers. He coined the term “refrigerator mothers,” to describe the phenomenon.

Bettlelheim’s theory was countered by Bernard Rimland, a psychologist and the father of an autistic child. In 1964, he published “Infantile Autism: The Syndrome and Its Implication for Neural Theory of Behavior” that helped redefine and redirect the research at that time.

Modern Therapies for Autism Spectrum Disorder Emerge

It wasn’t until the 1980s and 1990s that more modern therapies for children with autism emerged, such as behavioral therapy, focusing on positive rewards and controlled learning environments.

In 1987, “infantile autism” was expanded into “autism disorder” which finally had a specified list of diagnostic criteria to help standardize the diagnosis. The same year, Ivar Lovaas published the first study showing that intensive behavior therapy can help children improve their autistic symptoms.

In 1991, the U.S. Government made autism a Special Education category, which helped public schools offer special services to children on the spectrum.

However, the 1980s and 1990s did not see all positive movements in ASD. In 1998, a study published claimed that the routine childhood immunization measles–mumps–rubella (MMR) vaccine caused ASD. The study was later debunked, but was spread wildly by disinformants and misinformants enough to create confusion to this day.

Present Day Autism Spectrum Disorder

This brings us to today, which includes the merging of the separate autistic disorders into the umbrella term Autism Spectrum Disorder.

In 2014, the U.S. Centers for Disease Control (CDC) reported that 1 in 68 school–aged children were diagnosed with ASD. More recent statistics place that number much higher, reporting 1 in 40 children aged 3 and older have been diagnosed with ASD.

Globally, as of 2015, ASD was estimated to affect 24.8 million people. In the 2000s, the number of ASD people worldwide was estimated at 0.001%–0.002% of the population. In the U.S., about 1.5% of children were diagnosed with ASD as of 2017 up from 0.7% in 2000.

There are 3 million people in the United States with ASD and tens of millions worldwide. This is a 1,000% increase in the last 40 years, and research shows that this change can only partially be explained by better awareness and diagnosis markers.

In 2013, an estimated $305.6 million went towards researching ASD. These funds paid for research on the causes, treatments, diagnoses and services of ASD. ASD diagnoses transcend racial, socioeconomic, and ethnic groups. The CDC’s latest research puts the incidence of ASD at 4.5 times more likely among boys than girls.

The Historical Timeline For Autism Spectrum Disorder

It has been more than 50 years since Leo Kanner first described his “classic autistic syndrome”. Since then, the results of research and clinical work have helped us learn more about ASD. More and more people are being diagnosed as autistic.

The timeline below explores the history of autism, highlights some “autism pioneers” and details the incredible work they’ve done.

Kanner Syndrome (1943)

The specific pattern of “abnormal behavior” first described by Leo Kanner is also known as “early infantile autism”. Kanner gave no estimate of the possible number of people with this condition but he felt that it was rare (Kanner, 1943).
More than 20 years later, Victor Lotter published the first results of an epidemiological study of children with the behavior pattern described by Kanner in the former county of Middlesex, which gave an overall prevalence rate of 4.5 per 10,000 children (Lotter, 1966).

The Triad Of Impairments (1979)

In 1979 Lorna Wing and Judith Gould examined the prevalence of ASD, as defined by Leo Kanner, among children known to have special needs in the former London borough of Camberwell.
They found a prevalence in those with IQ under 70 of nearly 5 per 10,000 for this syndrome, close to the rate found by Lotter. As well as children with Kanner “autism,” Wing and Gould also found a larger group of children (about 15 per 10,000) who had difficulties with social interaction, communication and imagination (to which they referred as the “triad” of impairments), as well as a repetitive stereotyped pattern of activities.
Although these children did not fully fit into the description of early childhood autism (or typical autism) as described by Kanner, they were described as being on the broader “autism spectrum”. The total prevalence rate for all autistic children with special needs in the Camberwell study was approximately 20 in every 10,000 children (Wing and Gould, 1979).
A Gothenburg, Sweden study found very similar rates in children with learning disabilities (Gillberg et al, 1986).
Other studies in different countries have also looked into ASD and numbers of autistic children (but not the whole spectrum). These results range from 3.3 to 60.0 per 10,000. This broad difference in range could be explained by differences in definitions or in case–finding methods (Wing and Potter, 2002).

Asperger Syndrome (1993–1995)

Introduction to Asperger Syndrome

In 1944 Vienna, Hans Asperger published an account of children with many similarities to Kanner autism but who had abilities, including grammatical language, in the average or high above average range. The exact relationship between Asperger and Kanner syndromes continues to be in dispute. But one thing is clear, they both share the triad of impairments: social interaction, communication and imagination, and a narrow, repetitive pattern of activities (Wing, 1981; 1991).

1993

Stephan Ehlers and Christopher Gillberg published the results of a further study carried out in Gothenburg, Sweden. This study examined children in mainstream schools. The aim was to find the prevalence of Asperger Syndrome and other autism profiles in children with IQs of 70 or above.
From the numbers of children identified, they calculated a rate of 36 per 10,000 for those with a definite diagnosis of Asperger Syndrome and another 35 per 10,000 for those displaying social difficulties. It is possible that some of these children may have fit the description of Asperger Syndrome, had there been more information available at the time, but they were certainly within the autism spectrum. The teachers of these children had previously recognized social and/or educational differences, but had not been able to pin point the reasons for these differences.

1995

In Edinburgh, Scotland, for over 30 years Sula Wolff studied children of average to high intelligence who had difficulty with social interactions, but who did not fit into the triad of impairments. These children represent the “mildest” end of the autism spectrum. The majority become independent as adults, many marry, and some display exceptional intellectual gifts.
Sula Wolff chose to include them in the autism spectrum because since these children often have a difficult time at school, they need recognition, understanding and acceptance from their parents, teachers and peers. The approach that suits them best is the same as that which is recommended for children with Asperger Syndrome and “High–Functioning Autism“(as the condition was then called).
Sula Wolff quotes Ehlers and Gillberg’s study. She calculated that their total figure of 71 per 10,000 includes the children she describes.

Autism Spectrum Disorder (2005–2006)

2005

A survey by the Office of National Statistics of the Mental Health of Children and Young People in Great Britain found a prevalence rate of 0.9% for ASD or 90 in 10,000 (Green et al, 2005). These were not separated into autism, Asperger Syndrome or other profiles on the autism spectrum.

2006

Gillian Baird and her colleagues published a report of a prevalence study which surveyed a population of children ages 9–10 in the South Thames region.
All children who either already had an autism diagnosis or had social and communication difficulties were selected for screening.
Children considered to be at risk of being an undetected case because they had a statement of special educational needs were also selected.
Diagnoses were based on ICD–10 criteria. The results showed a prevalence rate of 38.9 in 10,000 for “childhood autism”, and 77.2 in 10,000 for other conditions on the autism spectrum, giving an overall figure of 116 in 10,000 (Baird et al, 2006).
In this study very few children were identified with Asperger Syndrome. The authors acknowledged that some children in mainstream schools who did not have a statement of special educational needs could have been missed, because of the selection criteria. The authors note that the prevalence estimate found should be regarded as a minimum figure (Baird et al. 2006).
ICD–10 diagnostic criteria for Asperger Syndrome suggests a person who would be diagnosed with Asperger Syndrome using the criteria used by Gillberg, would probably receive a diagnosis of “childhood autism” or “atypical autism” when using the ICD–10 criteria.

Autistic Adults (2007)

The Adult Psychiatric Morbidity Survey (APMS) is the primary data source for monitoring trends in England’s mental health. In 2007 it included autism for the first time, and found 1% of the population studied were autistic adults (Brugha, T. et al, 2009).
The Department of Health and Social Care then funded a project in 2012 to build on the APMS study and look more closely at the numbers of autistic adults that were not included in the original 2007 study. This included people in residential care settings and those with complex needs. Professor Terry Brugha of the University of Leicester led this study. Brugha also led on autism research for the APMS 2007. Combining its findings with the original APMS, the study found that approximately 1.1% of adults in England are autistic (The NHS Information Centre, Community and Mental Health Team, Brugha, T. et al, 2012).

Recent Studies from Other Countries (2008–2012)

The Autism and Developmental Disabilities Monitoring (ADDM) Network in the U.S. looked at eight–year–old children in 14 states in 2008, and found an overall prevalence rate of ASD of 1 in 88 within those states, with a diagnosis ratio among boys and girls of 1:5 (Autism and Developmental Disabilities Monitoring Network Surveillance Year 2008 Principal Investigators, 2012).
The National Center for Health Statistics in the U.S. published findings from telephone surveys of parents of children ages 6–17 taken in years 2011–12. The report showed a prevalence rate for ASD of 1 in 50, (Blumberg, S .J. et al, 2013).
A study of newborns to 17–year–old residents in Stockholm, Sweden between 2001 and 2007 found a prevalence rate of 11.5 in 1,000, very similar to the rate found in other prevalence studies in Western Europe, (Idring et al, 2012).
A much higher prevalence rate of 2.64% was found in a study done in South Korea, where the researchers found ⅔ of the people on the autism spectrum were in the mainstream school population, and had never been diagnosed before. (Kim et al, 2011).
Researchers comparing studies from different parts of the world over the past few years have come up with a more conservative estimate of 62 in 10,000. They conclude that both the increase in estimates over time as well as the variability between countries and regions are likely due to broadening diagnostic criteria, service availability and increasing awareness of ASD among professionals and the general public, (Elsabbagh M. et al, 2012).

Autism Spectrum Disorder in the Movies

This list of the 10 Best Documentaries about ASD

Web Resources

There are many professional organizations that aim to educate parents on ASD.

Additional Resources

Here are some resources on the early signs and symptoms associated with ASD.

Sources:
WHAT IS AUTISM SPECTRUM DISORDER?
https://harkla.co/blogs/special-needs/autism-spectrum-disorder
by Alescia Ford-Lanza MS OTR/L, ATP April 04, 2018
WHAT IS THE HISTORY OF AUTISM SPECTRUM DISORDER?
https://harkla.co/blogs/special-needs/history-of-autism
by Casey Ames March 30, 2018
The history of autism
https://www.autism.org.uk/advice-and-guidance/what-is-autism/the-history-of-autism
Historical Perspective
https://www.nationalautismcenter.org/autism/historical-perspective/
Wikipedia – Autism
https://en.wikipedia.org/wiki/Autism
How autism became autism
The radical transformation of a central concept of child development in Britain
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3757918/
by Bonnie Evans

The Repurposing Life