Autism spectrum disorder (ASD) affects 1 in 36 children in the United States today. But our understanding of this complex condition has changed dramatically over the past century. Tracing the key events and discoveries that have shaped autism research provides insight into how far we’ve come in supporting individuals on the spectrum.
The Origins of Autism in Psychiatry
The early history of autism is closely linked to the field of psychiatry. In 1911, Swiss psychiatrist Paul Eugen Bleuler coined the term “autism” to describe social withdrawal as a symptom of schizophrenia.
The modern conception of autism as a distinct condition began in the 1940s. In 1943, American child psychiatrist Leo Kanner published a paper describing 11 children who demonstrated obsessive interests, resistance to change, and “extreme autistic aloneness.” He used the label “early infantile autism” to capture their pattern of behavior.
In 1944, Austrian pediatrician Hans Asperger published a paper documenting four cases of children struggling with social integration, focused interests, and speech challenges. This work introduced the controversial concept of high-functioning autism. Asperger’s work was later used to define a diagnosis known as Asperger’s syndrome before it was folded into the broader autism spectrum in 2013.
The “Refrigerator Mother” Theory of Causation
In the 1950s and 1960s, autism was falsely blamed on emotionally distant “refrigerator mothers.” American psychiatrist Bruno Bettelheim claimed that autism resulted from mothers who did not love their child properly.
This theory has since been thoroughly disproven, but it caused tremendous suffering for parents of autistic children for decades. The refrigerator mother hypothesis was not fully rejected until broader recognition of autism’s biological and genetic roots began in the 1970s and 1980s.
Shifting to a Spectrum Model of Autism
Our understanding of autism began to shift dramatically in the 1970s thanks to research by psychiatrist Lorna Wing in the UK. Her work introduced the idea of an autism “spectrum” encompassing a wider range of symptoms and abilities.
Wing identified a triad of key characteristics: difficulties with social interaction, communication challenges, and restrictive/repetitive behaviors. This helped move autism towards being conceptualized as a spectrum disorder.
Autism Formally Enters the DSM
In 1980, the diagnosis “infantile autism” first appeared in the Diagnostic and Statistical Manual of Mental Disorders (DSM-III), published by the American Psychiatric Association.
This marked autism’s formal recognition as a distinct condition by the medical establishment. Updated DSM criteria in 1987 (DSM-III-R) shifted the name to “autistic disorder.”
In 2013, the release of the DSM-5 officially replaced this with “autism spectrum disorder,” recognizing the wide variation in challenges and abilities within autism.
The Autism Rights Movement Emerges
In the 1990s and 2000s, new organizations formed to advocate for the civil rights of autistic individuals. These included the Autistic Self-Advocacy Network and the Global and Regional Asperger Syndrome Partnership.
Autistic self-advocates have played a key role in shifting public understanding. They have rejected functioning labels like high/low-functioning autism and the pathologizing of autism as a disorder to be cured.
The Prevalence of Autism Diagnoses Rises
Rates of autism diagnosis rose dramatically from the 1980s through the 2010s. In 2000, the CDC estimated 1 in 150 children were autistic. By 2020, this had risen to 1 in 54.
Multiple factors contributed, including:
- Broader diagnostic criteria
- Increased public and professional awareness
- More access to screening and services
- Greater acceptance reducing stigma
This rise fueled public interest in determining autism’s causes and potential treatment approaches.
The Vaccine-Autism Hypothesis is Discredited
In 1998, British doctor Andrew Wakefield published a fraudulent study linking the MMR vaccine to autism. This fueled widespread fear about childhood vaccines.
But extensive further research conclusively found no link between vaccines and autism risk. Wakefield lost his medical license in 2010 due to ethical violations.
Unfortunately, the vaccine-autism myth continues to spread misinformation online despite definitive scientific refutation.
Autism Research Accelerates into the 21st Century
Tremendous progress has been made in autism research since 2000, enabled by new technology and increased funding. Some key breakthroughs:
- 2002: Researchers identify inherited genetic mutations linked to autism.
- 2003: Brain scan studies reveal differences in communication pathway development in autistic toddlers.
- 2012: Whole-genome sequencing identifies shared mutations on chromosome 16 linked to autism.
- 2020: A large genetic study identifies 102 genes involved in early brain development associated with autism.
This expanding knowledge continues to shape our understanding and provide hope for better supporting individuals living with autism.
How Views of Autism Have Evolved
Autism awareness and public perceptions of autism have changed dramatically over time. Looking back illuminates how far society has come in accepting and including people on the spectrum.
From Obscurity to an “Epidemic”
In the 1950s and 1960s, autism was virtually unknown to the general public. Few children were diagnosed, and many languished in institutions or mental asylums.
By the 1990s and 2000s, autism diagnoses had skyrocketed. Fueled by expanded diagnostic criteria and services, autism rapidly moved into mainstream awareness. Media coverage increasingly portrayed it as an “epidemic.”
While this perspective has been debunked, it reflected the rapid reversal from an obscure disorder to a widely discussed diagnosis.
From Exclusion to Inclusion in Schools
In 1975, the Education for All Handicapped Children Act gave autistic students the right to public education. Prior to this, most autistic children were excluded from schools.
Progress continued with the Individuals with Disabilities Education Act in 1990 mandating that schools meet the needs of all students with disabilities, including autism.
Special education and supportive therapies have enabled more autistic youth to thrive in academic settings.
From Institutionalization to Independent Living
In the mid-20th century, autistic individuals were often placed in restrictive institutions and asylums. The autism rights movement has fought against this, pushing for independent living.
More autistic adults are now able to live on their own with supports in place. However, limited services and resources remain major barriers for many.
From Parent-Led to Self-Advocate Led
Autism advocacy was long dominated by non-autistic parents and professionals. But groups like the Autistic Self-Advocacy Network gave autistic individuals a platform to advocate for themselves.
Autistic self-advocates have brought invaluable perspectives based on lived experience. The mantra “Nothing About Us Without Us” encapsulates their fight for a central voice in policy and services.
From Cure to Acceptance
The autism rights movement has fought against the notion that autism is a disease to be cured. Advocates argue that autism is a natural part of human diversity to be accepted and accommodated.
Efforts to make autistic individuals “normal” through interventions like ABA therapy remain controversial. Acceptance and supports tailored to individual needs are increasingly valued over trying to make autistic people conform.
The Continuing Evolution of Autism Support and Services
While understanding of autism has progressed, major gaps remain in effectively supporting autistic individuals and families. Ongoing advocacy aims to improve quality of life across the lifespan.
Early Intervention Services
Early intensive behavioral interventions can benefit some young autistic children. But availability of ABA therapy and other services remains limited by cost and access barriers. Advocacy is still needed to improve early autism support.
Transition Support to Adulthood
Services and structure often drop off dramatically after autistic youth age out of school-based support. This makes the transition to independent adulthood incredibly challenging. Expanding vocational training and coordinated adult services is essential.
Accessible Healthcare
Many autistic individuals struggle to get their healthcare needs met. Sensory issues, communication challenges, and lack of provider training contribute. There is an urgent need to improve medical and mental healthcare tailored to the autism community.
Housing and Residential Services
Housing options to meet the diverse needs of autistic adults are in short supply. Expanding independent and community living supports, residential services, and affordable housing access would dramatically improve quality of life.
Employment Opportunities
Autistic adults have much to contribute in the workplace, but face low employment rates and underemployment. Workplace accommodations and autism hiring initiatives are needed to improve outcomes.
There is no one-size-fits-all approach to autism support. The ultimate goal is enabling all autistic individuals to reach their potential with dignity. We still have far to go to make that vision a reality.
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References
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Evans, B. (2013). How autism became autism: The radical transformation of a central concept of child development in Britain. History of the Human Sciences, 26(3), 3-31. https://doi.org/10.1177/0952695113484329
Folstein, S., & Rutter, M. (1977). Infantile autism: a genetic study of 21 twin pairs. Journal of Child Psychology and Psychiatry, 18(4), 297-321. https://doi.org/10.1111/j.1469-7610.1977.tb00443.x
Larsson, E. V. (2011). O. Ivar Lovaas (1927–2010). The Behavior Analyst, 34(1), 111–114. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3089401/
Posar, A., & Visconti, P. (2017). Tribute to Grunya Efimovna Sukhareva: the woman who first described infantile autism. Journal of Pediatric Neurosciences, 12(4), 300–301. https://doi.org/10.4103/jpn.JPN_46_17
Silberman, S. (2015). NeuroTribes: The Legacy of Autism and the Future of Neurodiversity. New York: Avery.