The complicated history of autism diagnosis. So much has changed.
This article is an addendum to my book, Invisible Parents: Hidden Secrets of Special Needs Parents: A Book of Hope, and my intention is to keep special needs parents updated on the most current research.
Autism spectrum disorder (ASD)is a neurodevelopmental disease with a wide range of conditions that vary from child to child. Characterized by repetitive behaviors, poor social skills, speech impediments, and nonverbal communication, the symptoms are severe in some children and less in others. The Centers for Disease Control (CDC) reports that ASD affects approximately 1 in 36 children in the United States.
ASD diagnosis has a long, complex history, and like the spectrum disorder itself, continues to evolve as new research and medical discoveries are born. ASD presented today — its symptoms and characteristics — is far different from decades ago (Autism Society, 2021). This article explores the unique journey of ASD in the Statistical Manual of Mental Disorders (DSM) and hopefully makes autism easier to understand for parents and caregivers.
What ASD Looks Like Today: The Basics
ASD has many subtypes that are influenced by genetic and environmental factors. Because it’s a spectrum disorder, each child has unique challenges and strengths. The Diagnostic and Statistical Manual of Mental Disorders first identified autism as a broad-spectrum disorder in 2000 in the DSM-IV (Science, 2018). While symptoms present differently in every child, children diagnosed with ASD may present these characteristics:
Communication difficulties in social situations
Limited interests and repetitive behaviors
Behavioral issues
Learning difficulties
Avoiding eye contact
Lack of happy or sad expressions
Triggered outbursts
Sound, light, and touch sensitivity
Of course, there are many other symptoms to discuss as we look at the history of ASD diagnosis, but parents should get an evaluation if they believe their child may be autistic. Early intervention is crucial for helping a child (Rogers, S., et al., 1989).
The Origins of Autism: DSM-II
Originally presented as childhood schizophrenia, Autism (ASD) presented as the result of “cold parenting” (described below), then as related developmental disorders, and finally as a spectrum condition with differing degrees of impairment. While objective views shifted, the diagnostic components also changed considerably. Here is a timeline of the evolution of ASD diagnosis under the DSM(Evans B., 2013).
Refrigerator Mothers
Since the 1960s, an exponential increase in the diagnosis of ASD has brought much more attention from scientists and researchers (Silverman, C., 2011).
In 1943, when psychiatrist Leo Kanner first described autism (it was not called ASD at the time) his papers described “extreme autistic aloneness” in children and an “anxiously obsessive desire for the maintenance of sameness.” He also said the children were often intelligent and some had exceptional memories.
To Kanner, autism existed as a profound emotional interruption that did not affect cognition. Because of his influence, the second edition of the DSM-II, published in 1968, labeled autism as a mental illness, more specifically, schizophrenia marked by a separation from reality (Aldinger, K., 2015). Also, during the 1950s and 60s, scientists labeled autism as rooted in cold and unsympathetic mothers whom Bruno Bettelheim called “refrigerator mothers” (Haefele W., et al., 2015)
DSM-III: A Diagnostic Concept
In the late 1960s and throughout the 1970s, pivotal strides were made in the understanding and identification of autism. Notably, Rimland (1964, 1968) crafted the initial checklist to assess symptoms indicative of autism. Various research avenues converged, challenging the previous notion that autism was merely an early phase of schizophrenia. Consequently, Rutter (1978)introduced a redefined concept, characterizing autism as impaired social and language skills that went beyond typical developmental norms.
This redefinition significantly influenced the formulation of DSM-III. Simultaneously, the American National Society for Autistic Children (NSAC, 1978) suggested an alternative definition that included unique behavioral patterns.
It also included sensory deficits in different environments. Children with autism often present sensitivities to light, sound, and touch. Although this new proposal had a lesser impact on DSM-III, the recognition of sensory sensitivities endured, ultimately finding a place in DSM-5 almost four decades later.
Pervasive Developmental Disorders
Yet, DSM-III (APA, 1980) marked a pivotal milestone for autism, placing it within an entirely new category of conditions — the Pervasive Developmental Disorders (PDDs). The definition assigned to “infantile autism” in DSM-III stayed true to the disorder’s name, focusing on traits typically observed in young children, and it became a precursor to the ASD terminology.
The criteria outlined a pervasive absence of social responsiveness, aligning with Kanner’s initial characterization of the condition. However, it acknowledged that individuals with autism changed over time, not consistently maintaining the ‘classic’ infantile form.
Consequently, an additional diagnostic term, “residual infantile autism,” introduced cases that had previously met the criteria but no longer did. Another diagnostic category, along with its residual counterpart, aimed to delineate children who exhibited autism-like features after a prolonged period of typical development. This likely reflected an awareness, as seen in samples like Kolvin’s (1971), of a small group of children developing autism after the age of three.
Drawbacks
Although DSM-III provided crucial recognition for infantile autism, its drawbacks surfaced rapidly. The definition, being monothetic (i.e., requiring all conventions to be met), jeopardized flexibility in the criteria.
The diagnosis lacked a developmental orientation, neglecting the representation of adults with autism, and placed it awkwardly under the term ‘residual.’ The rationale behind the childhood-onset PDD category remained unclear, and the term Pervasive Developmental Disorders itself proved cumbersome.
Still, the influence the DSM-III cultivated in autism research is evident. In 1985, there were 335 scientific papers on ASD, and by 2015, 885, a tribute to the impact of the DSM-III.
The Shift From DSM-III to DSM-IV
Although DSM-III’s recognition of autism marked a major evolution, the 1987 revision, DSM-III-R (APA, 1987), considered several crucial changes to the previous edition. A notable conceptual shift in DSM-III-R was the transition from the condition name “infantile autism” to “autistic disorder.” This shift reflected an awareness of the necessity for a more flexible and developmentally-oriented approach, specifically across ages and developmental levels (Siegel et al., 1988). This approach aligned with a broader diagnostic concept (Wing, 1993).
New Detailed Criteria, New Hope
DSM-III-R introduced a novel polythetic set featuring 16 detailed criteria, categorically arranged into the three established domains characterizing autism: (1) qualitative impairments in reciprocal social interaction, (2) communication impairments, and (3) repetitive movements, limited interests, and difficulty with change. To diagnose an autistic disorder using the DSM-III-R approach, a minimum of eight positive criteria was necessary, comprising at least two from the social domain and at least one from each of the other two difficulty categories.
The drafting process for DSM-IV surpassed previous versions in complexity. It involved dedicated work groups focusing on diverse topics, commissioned literature reviews, data reanalysis, and a field trial conducted in collaboration with the World Health Organization’s International Classification of Diseases (ICD-10) workgroup (Volkmar et al., 1994). From the outset, numerous issues from the DSM-III-R were tackled.
New Diagnostic Categories
Examining the data revealed that compared to the ICD-10 draft criteria, the DSM-III-R approach was excessively broad. The inclusion of new categories in ICD-10, particularly Asperger’s disorder, stirred controversy. A multitude of disparate approaches to diagnosing this condition emerged, lacking a clear consensus on the best diagnostic methods (Ghaziuddin, M., et al., 2002).
Another concern was that the ICD-10 research definition went into more detail than practical for routine clinical work, with clinical definitions being somewhat vague. This raised the question of whether DSM-IV could strike a balance between clinical and research considerations.
The decision to include a separate diagnosis for Asperger’s disorder found support in research involving 50 participants with well-documented Asperger’s cases. The diagnostic criteria for Asperger’s disorder underwent revisions during the final production process, extending beyond the decisions made by the official DSM-IV committee (Volkmar et al., 1994).
The DSM-5
Expanding upon DSM-IV and incorporating decades of research, DSM-5 (APA, 2013) signified a crucial shift in the conceptualization of autism, transitioning from a multi-categorical diagnostic system to a unified diagnosis founded on multiple dimensions.
DSM-5 presented the term autism spectrum disorder. This diagnosis encompasses two feature groups: “persistent impairment in reciprocal social communication and social interaction” and “restricted, repetitive patterns of behavior,” manifesting in early childhood. The new manual removed Asperger’s syndrome, PDD, and classic autism.
Today, scientists and physicians continue to view autism as a spectrum of conditions, and as new research comes to fruition, the DSM is bound to change yet again. The history of how autism morphed into what it is today is imperative to understanding the multi-faceted disorder.
One of the most powerful things special needs parents can do is stay updated on autism research. For a comprehensive book on autism and tips on how to navigate the service system, see my book here. All proceeds go to autism research.
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