History is the retrospective lens through which societies observe how ideas, beliefs, and cultures change over time. The evolution of psychiatric illness as a concept is an especially important part of our collective history, as the way that mental disorders are defined, diagnosed, categorized, and treated is reflective of broader cultural currents and social perspectives. With continued research and more nuanced biopsychosocial models, our understanding of the mind and its functions has become increasingly more dynamic and comprehensive. A prime example of a psychiatric condition undergoing significant change and positive development in both the scientific knowledge of and societal response to it is Autism Spectrum Disorder (ASD). While this neurological and developmental disorder has varied in its diagnostic criteria, etiology, and treatment methods across multiple historical, social, cultural, and political contexts, the centrality of the autism parent to ASD discourse has remained constant. From the 1950s through the 1970s, it was commonly thought that mothers were responsible for causing autism by not exhibiting adequate emotional warmth, love, and affection towards their children. However, advancements in neuroscience and developmental research have since discredited this mother-blaming narrative and parents are now celebrated as some of the most outspoken and effective advocates for the autistic community. Analyzing this transformation in the perceptions and representations of autism parents offers insight into how ASD itself is and has been perceived by society.
Before we can discuss how the role of autism parents has evolved, we need to look at the history of ASD. Initially, autism was considered a rare condition: an early epidemiological study conducted by Cook & Willmerdinger in 1966 found a prevalence of a mere 4.5 cases per 10,000 children (Cleary et al. 64). By contrast, in 2020, about 1 in 36 children were identified with ASD, according to estimates from the Centers for Disease Control and Prevention’s Autism and Developmental Disabilities Monitoring (ADDM) Network (Maenner 1). ASD is among the fastest growing disabilities, which has largely been attributed to “improvements in more equitable identification of ASD, particularly for children in groups that have less access or face greater barriers in obtaining services [such as] diagnostic evaluations” (2). In other words, the rates of autism diagnoses are expected to continue growing exponentially as more widespread and inclusive screening programs enhance detection of the condition. Screening is exceptionally critical for identification since there are no known biomarkers of autism that can be objectively measured through medical tests (such as by evaluating blood or soft tissue samples). As a result, ASD is much more difficult to establish because it is primarily diagnosed through observation and behavioral interpretation, along with an analysis of an individual’s developmental history and assessments centering on social interaction and restricted, repetitive movements (Chahboun et al. 1).
The definition and corresponding criteria for diagnosing autism have dramatically shifted over time, reflecting the complexity of the condition. The term ‘autism’ was first coined by Swiss psychiatrist Eugen Bleuler around 1908 to describe one of the four fundamental symptoms of schizophrenia (Jackman and Zwaigenbaum 215). More specifically, Bleuler used ‘autism’ to refer to a “definite withdrawal from the external world,” asserting that “the essence of autism [was] a lack of contact with shared reality” (216). Bleuler credited Sigmund Freud with the etymological roots of the word ‘autism,’ as Freud employed the term to represent an “infantile stage of hallucinatory thought to be associated with self-soothing” in 1905 (215). Additionally, ‘autism’ is derived from the Greek word ‘autos,’ meaning ‘self,’ and the Greek suffix ‘ism,’ which typically implies an act, condition, characteristic, or theory; therefore, the linguistic origin of ‘autism’ denotes a “quality of being in, or of, oneself” (215-216). Taken together, the origin of the word ‘autism’ and the two earliest known documentations of it by Freud and Bleuler illustrate that the initial characterization of the disorder was closely linked with the notion of retreating into oneself. Indeed, Bleuler’s idea of ‘autism’ as a symptom was founded upon his psychiatric observations of behavior among severely schizophrenic adults who had withdrawn into themselves (215). At the 1922 International Conference on Psychoanalysis in Berlin, Jean Piaget, a Swiss psychologist who trained under Bleuler, presented his paper La pensée symbolique et la pensée de l’enfant (symbolic thought and children’s thought), which drew upon Bleuler and Freud’s work to connect the concept of autism directly to children’s “progressive attempts to engage with reality” (216). Piaget also used the term ‘autism’ to reference an early infantile state of egocentrism, a state of mind that was eventually called ‘infantile autism’ in the 1940s (216).
As a defined diagnosis and focus within psychiatric healthcare, ASD is relatively new. Although ‘infantile autism’ was introduced in 1943 by Leo Kanner as a type of childhood schizophrenia, it was officially separated from schizophrenia and only became a distinct diagnosis in 1980 with the publication of the 3rd edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM) by the American Psychiatric Association (Cleary et al. 65). In comparison, there is no appearance of either the diagnosis or definition for autism itself in the DSM-I (1952); the manual only mentions autism once in connection with schizophrenic reactions in young children, much like what was meant when Bleuler first coined the term (Zeldovich). In the DSM-II (1968), however, autism was defined as a psychiatric condition more in line with Piaget’s theories — it was considered a “form of childhood schizophrenia marked by a detachment from reality,” caused by cold, unemotional mothers (Zeldovich). As previously mentioned, the DSM-III (1980) established autism as its own diagnosis distinct from schizophrenia, classifying it as a “pervasive developmental disorder” with biological underpinnings (Zeldovich). The new classification of autism as a separate condition and the discovery that it is rooted in brain development rather than maternal deprivation marked huge milestones in our understanding of ASD. The DSM-III also listed specific criteria required for a diagnosis and outlined three essential features of autism: “a lack of interest in people, severe impairments in communication and bizarre responses to the environment, all developing in the first 30 months of life” (Zeldovich).
The autism criteria were again significantly altered after the DSM-III was revised in 1987; ‘Pervasive Developmental Disorder – Not Otherwise Specified’ (PDD-NOS) was added as a milder autism diagnosis, while the requirement for onset before 30 months was dropped (Zeldovich). Moreover, the updated manual listed 16 criteria across the three previously established domains, 8 of which had to be met for a diagnosis of ‘Autistic Disorder’ (formerly known as ‘infantile autism’) (Zeldovich). These changes broadened the concept of autism in that the definition was expanded to “include children who didn’t fully meet the criteria for autism but still required developmental or behavioral support” (Zeldovich). Thus, even though neither version of the DSM-III explicitly used the word ‘spectrum’ in conjunction with autism, these changes suggest that autism had begun to be understood as a continuum of conditions that can be present throughout the lifespan, rather than a single condition or one confined primarily to children. Then, in the DSM-IV (1994), for the first time, autism was expressly categorized as a spectrum. With the DSM-IV also came the introduction of new, independent autism-adjacent conditions with distinct features. In addition to autism (Kanner’s syndrome) and PDD-NOS, it added ‘Asperger’s Disorder’ at the mild, “high-functioning” end of the spectrum and ‘Childhood Disintegrative Disorder’ (CDD) and ‘Rett syndrome’ at the more severe, “low-functioning” end (Zeldovich). This breakdown into multiple subgroups paralleled the research hypothesis at the time that ASD is caused by ‘autism genes,’ as researchers hoped that “each category would ultimately be linked to a set of specific [genetic] problems and treatments” (Zeldovich).
Unfortunately, pinpointing individual ‘autism genes’ has not been possible to date, so the DSM-5 (2013) consolidated these subtypes under the one umbrella term of ‘Autism Spectrum Disorder.’ This all-encompassing label was intended to eliminate inconsistency in how clinicians arrive at a diagnosis of autism by focusing on different levels of symptom severity in two core domains: “persistent impairments in reciprocal social communication and social interaction” across multiple contexts and “restricted, repetitive patterns of behavior,” interests, and activities (Zeldovich). Yet, this revision, even more so than the other editions, was extremely controversial. With the collapse of discrete categories, many were concerned that they would lose their diagnosis under the new criteria and with it, their access to supportive services and insurance coverage. Meanwhile, others considered the threshold too low, as the official DSM-5 does not “specifically require any minimal number of the symptom criteria under [the] social-communication domain [to] be present to qualify for a diagnosis” of ASD and only requires “at least two” symptoms under the restricted-repetitive domain (Tsai 10). This lack or decreased number of criteria required under the two domains, respectively, has possibly contributed to the larger number of positive diagnoses, which some may argue has the deleterious effect of diverting resources from those with more serious disabilities.
Since autism is typically diagnosed in early childhood and its symptoms begin shortly after birth, parents play an integral part in the detection and ongoing management of the condition, often throughout their child’s lifetime. The challenges presented by deficits in communication, socialization, education, and behavioral management for children with ASD place unique demands on not only the child, but also on their parents (Cleary et al. 65). Parenting a child with ASD is an often stressful and taxing experience, particularly in countries with limited resources and inadequate disability support systems. Several research studies indicate that caregivers of children with ASD struggle with elevated levels of anxiety, psychological distress, depression, and even suicidal ideation as compared to their counterparts with either neurotypical children or children with other psychiatric disorders such as Down’s syndrome and Attention Deficit Hyperactivity Disorder (ADHD) (Papadopoulos 1). Furthermore, in addition to impaired mental health, autism parents report poorer overall qualities of life and well-being, exhibit lower levels of resilience, are more susceptible to developing severe medical problems (including cancer and other conditions with an increased risk of early death), and are more likely to have issues in various areas of family life, especially within marital and sibling relationships (1-2).
A 2021 study investigating the lived experiences of mothers of autistic children in Greece identified possible explanations for these alarming statistics and grouped them into three interconnected categories: emotional burden, family/financial burden, and social burden (5). Each of the mothers interviewed in this study expressed that the emotional burden began the moment their child was diagnosed with ASD; they reported feeling an overwhelming “sense of guilt and shame” following their child’s diagnosis, which in turn caused extreme “distress and emotional fatigue” (6). They also cited “feelings of helplessness regarding the challenging daily childcare demands,” self-blame over their finite capacity to help their child, and “constant worry about the long-term impact of autism” on the child’s education and, subsequently, their “job opportunities, living conditions, and the ability to adapt successfully to adulthood” (6-7). In regard to family/financial burden, autism forcibly prompted a fundamental change in their family dynamics, as the “whole familial ecology had to adapt to a new reality [where one] child needed special parental treatment and long-term care,” which resulted in feelings of neglect and emotional distance among their spouses and other children (7). Moreover, because suitable, accessible intervention services for their children were frequently too expensive and not covered by insurance, several of these women had to make career-related sacrifices so that they could become full-time caregivers, which further exacerbated financial strain on their families. Lastly, in terms of social burden, these mothers stated that they experienced a “significant decrease in the quantity and quality of their social ties and relationships” as well as the loss of a ‘normal’ life due to the stigma of autism, which they attributed to negative societal stereotypes surrounding mental illness and disability (9).
Historically, mothers have not only had to grapple with these painful emotional, familial, financial, and social impacts stemming directly from their child’s autism — they have also had to combat harmful myths and misogynistic portrayals about themselves as parents. The most obvious example of this is Bruno Bettelheim’s theory about the alleged role of mothers in the origins of autism. Operating from a framework of Freudian psychoanalysis, Bettelheim built off of Leo Kanner’s work that underscored the “emotional distance exhibited among the mothers of autistics, crystalized in Kanner’s unfortunate phrase ‘refrigerator mothers’” (Briggs 1168). Kanner described this ‘refrigerator mother’ as a “figure who was emotionally detached and unavailable to her children,” which created an emotional disturbance that he initially linked to the withdrawn behavior of the autistic children he treated in his clinic (1168). Yet, it is imperative to note that Kanner stopped short of blaming parents for their child’s autism and, in fact, remarked that mothers would typically “come to him in despair and concern for their child,” which was contradictory to the idea of cold, distant mothers (Cleary et al. 66). Kanner also credited the “meticulous note-taking of mothers” as a valuable source of primary data that was indispensable to his research on autism (66).
Nevertheless, in the 1950s, Bettelheim co-opted Kanner’s term of ‘refrigerator mother’ and posited that “autism was a manifestation of a [child’s] defensive response to perceived emotional violence within the family,” which Bettelheim curtly summarized as “the parents’ wish that the child did not exist” (Briggs 1169). For Bettelheim, autistic children were “acutely aware” that their mothers rejected them in some manner and would withdraw from the world as a “form of protection,” echoing Bleuler’s prior description of autism as a deliberate withdrawal (1181). Bettelheim believed that it was therefore imperative for autistic children to be removed from their destructive families and placed in residential facilities so that they could “begin the healing process” by interacting with a “less threatening and fearful environment” (1169). Under Bettelheim’s direction, the Sonia Shankman Orthogenic School for Disturbed Children implemented a residential program that “immersed children with developmental differences in a ‘total therapeutic milieu,’” which signified that autistic children would be completely separated from their parents, without visitation, for extended periods of time (up to several years) (Jackman and Zwaigenbaum 223). This intense treatment model was founded on “establishing relationships between children and their individual counsellor, with the exclusion of parent involvement,” which theoretically would draw these autistic children “back into engaging with the world and allow for their eventual integration into society through the emotional modeling of proper behavior and the healing power of genuine care and acceptance” (Jackman and Zwaigenbaum 223; Briggs 1169).
Bettelheim claimed to organize the Orthogenic School as a type of “anti-concentration camp” that would “shelter troubled children from the anxieties they had experienced within the home” (Briggs 1170). Indeed, the Orthogenic School’s residential program was informed by Bettelheim’s own experiences and observations being detained at a Nazi concentration camp in Austria in 1938. During this time, Bettelheim witnessed how his fellow inmates reacted to this terrifying situation and hypothesized that the “external traumas inflicted in the concentration camp caused a personality change in the inmates, leading to a regression in their behavior to a more childlike and docile state” (1168). In his 1967 book, Empty Fortress: Infantile Autism and the Birth of the Self, Bettelheim likened the behavior of autistic children to these traumatized populations within Austrian concentration camps and theorized that childhood schizophrenia (autism) was caused by a similar form of psychological trauma inflicted by the mother (1168). Thus, Bettelheim concluded that the disturbed relationship between a ‘refrigerator mother’ and her child triggered “autistic behavior as a defense mechanism” to prevent the child from suffering further harm, which explains why the key feature of his treatment program was separating children from their mothers (1168).
In this way, Bettelheim’s ‘refrigerator mother’ theory depicted mothers of autistic children as cold-hearted villains at fault for their child’s autism. The failure to achieve normal child development resulted in blame for the mothers, who were frequently prescribed medications to “correct their interactions with their child and improve their self-regulation” (Cleary et al. 65). Interestingly, this practice positioned the mother as the actual patient rather than the child, which increased stigma towards both the autistic individual and their mother, for both needed to be “fixed.” Additionally, Bettelheim’s treatment plan requiring that children be separated from their parents reinforced the notion of parental blame by characterizing the home environment as inherently toxic and destructive to the child’s development. The underlying and complete sense of parental blame is also quite evident in Bettelheim’s outrageous comparison of autism parents to Nazis, which itself drives home the total vilification of parents (mothers) from the medical and academic establishments. Instead of support, autistic parents only found blame, responsibility, and social stigma.
This overwhelmingly unfavorable representation of the mothers — and to a lesser extent, fathers — of autistic children reflects broader societal understandings of ASD and mental illness in general throughout the mid-20th century. In the early 1940s, eugenics was still held in respect and the sterilization of people with intellectual and psychiatric disabilities remained legal in the United States. Furthermore, in this period, the dominant view among clinical and scientific establishments was less biologically oriented and more focused on psychoanalysis and emphasizing the importance of early life experiences. Therefore, the notion that autism was caused by bad parenting aligned with popular psychoanalytic thinking and, in the absence of any biomedical etiologies, Bettelheim’s theory offered a simple and direct explanation of what mothers did to cause autism (Briggs 1165). The ‘refrigerator mother’ theory had far-reaching impacts — it undeniably influenced the early diagnostic criteria for childhood schizophrenia in the DSM-II, which highlighted emotional detachment and lack of warmth as principal indicators of the condition (Zeldovich). The belief that autism was a consequence of maternal neglect and other alleged shortcomings on the part of mothers also had harmful ramifications for autism research. For instance, this theory shaped funding priorities for decades, as research on autism etiologies and corresponding treatment methods centered primarily on identifying supposed ‘autism-producing’ parental behaviors and correcting them. Although the ‘refrigerator mother’ theory has long since been abandoned, the 2021 survey of mothers of autistic children in Greece indicates that the repercussions of this theory continue. As voiced by these Greek mothers, the stigmatization of autistic people and their families is still an ongoing issue that takes a profound toll on these populations, prompting feelings of guilt, shame, and inadequacy. Ultimately, the ‘refrigerator mother’ theory led to a narrow and stigmatizing view of autism that ignored the complex genetic and environmental factors that contribute to the condition while simultaneously reinforcing damaging stereotypes about autistic people and their families.
Despite the fact that autism parents were for many years marginalized by clinical paradigms that attributed their child’s disorder to their interactions and minimized their role in intervention programs, through collective action, these autism parents reframed themselves as advocates and became active participants in raising awareness of ASD (Jackman and Zwaigenbaum 222). Concurrent with the movement towards deinstitutionalization, the first national autism parental advocacy associations were founded in the early 1960s, including organizations such as the Autism Society of America in 1965 (then called the National Society for Autistic Children) and the UK Society for Autistic Children in 1962 (222). These early advocacy groups served as crucial support systems for families with autistic children — they created forums for parents to discuss and solve mutual problems and also connected families with information and medical resources. Through such organizations, parents also sought to challenge mother-blaming; they vehemently spurned the narrative that there was any shame in their child’s disabilities and joined together to press governments and public services for more meaningful assistance for autistic children and their families (Cleary et al. 66). Parental lobbying was a major contributor to the “development of legislation for non-discrimination in accessing federal assistance and education,” resulting in the Education for All Handicapped Act (EHA) in 1975 (reauthorized in 1990 as the Individuals with Disabilities Act (IDEA)), the Americans with Disabilities Act in 1990, and the Children’s Health Act in 2000 (Jackman and Zwaigenbaum 222; Cleary et al. 67).
Several mothers of children with autism were the strongest voices in the early days of autism advocacy, including Dr. Ruth Christ Sullivan, the first elected president of the Autism Society of America in 1968, who was instrumental to the legislation above (Jackman and Zwaigenbaum 222). Another important figure was Rosalind Oppenheim, who increased public awareness of the difficult parenting journey for families with autistic children through the publication of her article “They Said Our Son Was Hopeless” in the Saturday Evening Post in 1961 (222). This article resonated with families across the United States and Oppenheim became a beacon of hope for those in similar situations, motivating her to establish The Rimland School for Autistic Children in 1971, an institution that continues to enrich the lives and educations of autistic children in Chicago (222). In 1967, American college English teacher and author Clara Claiborne Park published The Siege, the first parent-authored book about the experience of raising an autistic child (222). This book was credited as one of the first books to allay the guilt of autism parents during a time when autism was little understood and it provided other families with a comforting resource that validated their shared experiences. All three of these women rejected the dominant view that dysfunctional parenting was the cause of autism and countered the ‘refrigerator mother’ theory by instead suggesting that “‘refrigerator professionals’ in depersonalised clinical settings might actually cause otherwise engaged parents to appear as refrigerator parents” (Cleary et al. 65).
In addition to forming autism associations and publishing their stories of raising and supporting autistic children, parents also worked closely with educational professionals to expand teachers’ understanding of ASD and how it impacts children’s intellectual and emotional development (66). They persuaded education departments to make considerable changes to the language around ASD, such as replacing the outdated term ‘severely emotionally disturbed’ — which carried derogatory connotations that negatively affected the self-image of children on the spectrum — with more holistic vernacular that recognized autism as a developmental disorder (66). The acceptance of parents as powerful advocates and integral partners in providing effective care is exemplified by the growth of a plethora of learning programs that have consciously built parents into the design and delivery of a variety of autism-specific interventions — a far cry from Bettelheim’s earlier approach. For example, the Treatment and Education of Autistic and Related Communication Handicapped Children (TEACCH) program began in the United States in the 1970s and integrated parents in workshops and teaching sessions as partners with professionals, while the Early Start Denver Model, also based in the United States, is an early intervention program where parents are “actually given the training to deliver the developmentally based curriculum” in both clinical and home settings (67). This active inclusion of parents and their viewpoints is also evident in the Journal of Autism and Developmental Disorders (previously called the Journal of Autism and Childhood Schizophrenia), which is the leading peer-reviewed, scholarly periodical on all aspects of ASD and other developmental disabilities, adding a new section called ‘Parents Speak’ to amplify the autism parent perspective (66).
Thus, the concept of the autism parent has undergone an enormous shift, becoming the opposite of what it originally was; where mothers were once blamed for causing their child’s autism, they now are considered largely responsible for mitigating the effects of ASD on their children. The process of redefining the role of parents from uncaring ‘refrigerator mothers’ causing autism to empowered parents passionately campaigning for better, more empathetic autism responses brings us to where we are today. Parents have embraced their unique position as the people most informed about their child with ASD (only after the child themselves) and are unquestionably becoming some of the most vocal and persistent advocates for improved “access to support services, specialised educational supports, timely and accurate diagnosis, and wider acceptance of autism as a culture rather than as a disorder” (Cleary et al. 66). Indeed, with the knowledge that autism is a neurobiological condition with a genetic basis rather than a preventable defect resulting from a rejecting and emotionally distant mother, we have begun to recognize that instead of trying to fix the child, we should fix the world in which the child exists to better understand and accept neurodiversity. This mentality that autism is a natural part of the diverse human experience that should be celebrated rather than shunned has greatly reduced social stigma and resulted in much more compassionate ASD treatment methods, effective educational interventions, inclusive diagnostic criteria, and productive scientific research practices. In this way, reflecting on how the role of autism parents has been framed across time illuminates the evolution in how ASD itself has been perceived and understood.
1 Parents of those diagnosed as being on the autism spectrum.
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