Medical professionals have long contested the role of families in the history of autism. Parents, and especially mothers, were deemed to be catalysts for the developmental condition with the initial recognition of the disorder in the 1940s.Footnote 1 This idea was a common assumption in the psychological and medical literature of the 1960s across national boundaries in the Western world thanks to the profound influence of psychoanalysis within psychology at the time.Footnote 2 This understanding of the origins of autism was rooted in the belief that parents – intentionally or otherwise – had inflicted a type of emotional abuse on their children, leading them to retreat into themselves and detach from the world in a deliberate fashion. In this model, analysts were vital interlocuters who could protect these children from the emotional trauma inflicted on them by their parents by illuminating the parents’ harmful actions and addressing them through therapy.
Often couched in the language of psychoanalytic theory, these interpretations dominated thinking about autism during the 1950s and 1960s, primarily due to the lack of input from parents and autists about the experience of autism within the home and the increased influence of psychoanalysis, especially in the case of France.Footnote 3 These interpretations established the assumption of a combative terrain between parents and children within the family dynamic based on the inherent family drama at the heart of psychoanalytic theory. Psychologists, analysts and medical doctors established the initial literature about autism in case studies highlighting the effectiveness of psychoanalysis in treating the condition, leaving parents to react to their conclusions considering the former's expertise and the support of the medical establishment and the French state. Parents of autistic children responded by establishing national associations by the early 1960s to advocate for improved care and treatment for their children, but the associations’ journals and newsletters did not initially question the existing psychoanalytic orthodoxy concerning autism nor parents’ perceived role. In the professional literature, parents willingly underwent analysis in an effort to ameliorate their children's condition, becoming targets of analysts’ derision.Footnote 4
The appearance of Clara Clairborne Park's The Siege in 1967 (published in French in 1972) signalled a new type of narrative in autism literature that centred the efforts of parents to help their children, a literature that championed parents as important actors and even heroes in helping their children. Park's work suggested that the strong emotional bond between autists and their parents was something beneficial to development and therapeutic intervention instead of a source of autistic behaviour that needed to be treated. Afterwards, some autism literature in France followed a new, more intimate path that emphasised the dynamics within the family from a personal point of view, challenging the psychoanalytic assumptions about parents’ interactions with their children, while other examples emphasised the importance of political change to allow for better treatment of the disabled. Rather than a threat, families in this literature represented more of a support network and were advocates for their disabled children as vital cyphers of their experiences, signalling new possibilities for how they could respond to the social challenges of autism. As a result, parents became more resistant to the professional approach and in their literature emphasised the importance of resistance to psychoanalysis as a method of improving their children's care with the family as a more significant part of that care. This conclusion defined the approach of parents’ associations efforts to change the treatment regime beginning in the late 1970s.
This article will look at several significant examples to highlight the development of autism literature in France since the 1950s, focusing on the presentation of the family within these examples and how they illustrate a shift in understanding autism among parents from one of collaboration with professionals to one of resistance to professionals. It argues that the assumptions of the role of the family in autism accepted by parents in the 1950s and ’60s were questioned in published stories that suggested those assumptions were not rooted in the narratives of families who increasingly shared their experiences. The examples that follow trace the shift in perspective within autism literature and how that shift challenged the existing interpretations of autism's origins and meaning as well as changed how parents participated in their children's therapy and became advocates for alternative forms of care. With this development, the understanding of the family's relationship to disability and care transformed in late twentieth-century France from a potential threat to a potential resource as critical advocates and caretakers acting in the interest of their children against the state and therapists. The examples that follow highlight how therapists and professionals were able to define the place of the family in the initial literature based on their expertise. The appearance of literature from the parental perspective beginning in the 1970s was part of a larger shift underway in how parents petitioned for changes in the treatment of autism in France and increased their advocacy efforts.
This article will begin with the context of the family in French social and medical interventions, looking at the history of how families and disability have been connected in policy and practice. Then, it will outline a selection of early autism literature in France, beginning with the case studies of psychoanalysts such as Joyce McDougall and Françoise Dolto, to identify how the connection between parents and autism developed in the 1950s. It will follow with the emergence of parents in autism literature with the appearance of parent memoirs in the 1970s, both in translation and from French parents, as well as the shift in tone in parents’ association literature that began resisting the notion of parental culpability in the disorder. Lastly, it will look at how the ascent of parents shaped the ongoing challenges to psychoanalysis as a viable intervention in the treatment of autism, noting how autistic voices have articulated a more nuanced response in the twenty-first century that emphasises France's divergent place among European nations concerning autism, as most countries have adopted a different treatment model in line with anglophone approaches.
The transformation in the framing and actions of the family also emphasises its shifting place in social welfare, especially in the relationship of the disabled to public health. With the family as a place of intervention, parents recognised medical and governmental channels as an opportunity to challenge the existing orthodoxy concerning autism. As advocates, parents used the tools of empathy and legality to press for the services they felt could serve disabled children best. As families increasingly rejected the notion of autism's psychogenic origins, they positioned themselves as credible alternative experts in defining the necessary medical, educational and social reforms to allow for the proper inclusion of their children. Similar to other examples in this issue, families then became an important location in challenging state authority, but in these cases examined it was the voice of parents that defined how families engaged with the controversies of treatment in France and how autism literature helped to frame the possibilities of that engagement.
Families and Disability in Modern France
Since the French Revolution, French society has defined the family primarily as the legal authority of fathers through the Civil Code of 1804, reinforcing patriarchy as the nominal understanding of family dynamics following a period of intense debate during the Revolution.Footnote 5 Fatherhood was a legal and civic duty that proved durable despite the changing political regimes of the nineteenth century, although not without controversy as the French government sought to promote natalism to combat the declining birthrates and to address social problems. The desire to encourage childbirth and the creation of families brought the French government directly into the household in response to demographic changes in the late nineteenth century.Footnote 6 The bourgeois nuclear family with the father as its head became the French social ideal, and government efforts to intervene focused on examples that did not match that image through interventions known as corrections paternelle.Footnote 7 Motherhood was also under scrutiny during this period, as maternal responsibility became the object of political and social discourse to define women's role in the modern family with the ideal of republican motherhood emerging from the Revolution.Footnote 8 All of these ideas and efforts were in service of the ‘proper’ rearing of the next generation of citizens in the form of children, which included the need for emotional attachment to prevent maladaptive behaviours. The tension between the legal authority of the father within the family and the need of the state to promote certain ideals opened the family up to forms of intrusion and intervention in the nineteenth century that would continue well into the twentieth.
The medicalisation of mental disability during this same period intersected with this paradox to further redefine the role of families in the care of disabled children, as the expectations of roles were met with reality of care of the mentally disabled. With the emergence of asylums and moral treatment, the family was identified as a key site of intervention. Pioneered by British Quaker William Tuke, moral treatment was popular in Europe beginning in the eighteenth century and was based on the notion of getting the disabled involved in everyday activities, though frequently under the supervision of psychiatrists and not the family.Footnote 9 In France, Philippe Pinel and J.E.D. Esquirol advocated similar ideas to Tuke's moral treatment by recognising the influence of emotion in expressions of mental disability, although often with specific models of the family as a healthy norm to be attained through treatment while warning of pathological families’ negative influence.Footnote 10 Thereafter, the association of mental disability with heredity put the family at the heart of concern for professionals seeking to control and eradicate disability. A powerful example of this sentiment can be found in the writings of Charles Féré, a French reformer in the late nineteenth century who saw the neuropathic family as a vector for the spread of numerous forms of mental disability.Footnote 11 While Féré advocated for the removal of the disabled from their families, there was also the understanding of the need of families to participate in the care of their disabled relatives somehow. Certainly, the tension between these perspectives was offset by psychiatrists’ authority as the final arbiter of care, which justified the invasion of the private world of the family. By the twentieth century, the family was firmly entrenched as a flashpoint for understanding the genesis and treatment of disability.
In this context, psychiatrists recognised autism as a pattern of specific behaviours at the beginning of the twentieth century. Autism is currently defined as a developmental disorder that can manifest in myriad ways, including a lack of speech, social isolation and repetitive behaviours, and diagnosed through observation of external conditions.Footnote 12 However, initially it was assumed to be an expression of childhood schizophrenia. Identified in the United States in 1943 by Leo Kanner and in Austria in 1944 by Hans Asperger, autism was first associated with children, primarily due to the age of the patients that each of these doctors had initially encountered. Its origins were assumed to be psychogenic, born out of the disturbed nature of relations between parents and children that led to the deliberate withdrawal of autistic children from the world. The context of these thinkers is important, as Kanner's notions of autism developed out of a self-selected population of parents who had enough information to contact him about their children's behaviour and Asperger's developed during the period of the Anschluss and the influence of Nazi ideology in medicine.Footnote 13 Autism was considered as a psychopathology, but the diagnostic criteria that these two thinkers established accelerated the process of situating it as a psychological response to the emotional failure of parents, with the autist retreating into an interior world as a defence mechanism. Kanner and Asperger labelled behaviours that had already been identified by other psychologists, and examples of those populations had already been identified in institutions such as the Tavistock Clinic in Great Britain and the Salpêtrière in France.Footnote 14 However, their conclusions established a diagnosis that would justify the continued removal of autistic children from the household for the good of the family, especially as the family was implicated in the emergence of the disorder.
Eugenics remained influential in Western thought at this time, and there was an overwhelming concern about the ‘defective child’ in society and the moral imperative to end their suffering through euthanasia.Footnote 15 Asperger's work intersected with this notion as part of his participation in Nazi medicine during the Second World War.Footnote 16 Eugenics squarely put the issue of disability in the realm of the family and made it an ongoing concern of French society to monitor disability and promote ‘healthy’ families. Certainly, the rhetorical importance of the family was a cornerstone of the Vichy regime articulated through its pronatalist policies, but the continuation of eugenic concerns after the Second World War reveals how entrenched the notion of proper families was in France.Footnote 17 One of the more robust examples of this continuity was the experimental community of Ungemach Gardens in Strasbourg, in which a garden city served as a site to implement the ideas of genetic selection after the Second World War. Ungemach Garden was established with the concept of biological fitness and childbearing quotas as part of the contract between the government and its participants through a selection process that stressed the importance of fecund couples producing useful children. Disabled parents and children were identified and removed from the community.Footnote 18 The persistence of eugenic practices in postwar France, especially the concern about connection between healthy reproduction and disability, entrenched the medical community's power in family affairs beyond the state's promotion of natalist policies and affirmed the inherent danger within families concerning disability.
Along with eugenics, psychoanalysis emphasised concerns and anxieties about the impact of poor parenting. It had gained more adherents in France after the Second World War and moved away from its marginalised position within the medical profession.Footnote 19 Psychoanalysis eventually became influential in the understanding of the family, especially at the intersection of French law and the state's family policies. In practice, psychoanalysis informed interventionist approaches from the state about how to deal with children exhibiting antisocial behaviours after the Second World War. For example, the Centre Claude Bernard opened in Paris in 1946 as a resource for families to help with ‘socially troubled’ children. As a psycho-pedagogical centre, it served as a way for children to experience therapeutic situations, informed by psychoanalysis. The centre used a technique known as ‘psychodrama’, which allowed children to re-enact domestic situations with therapists, again reinforcing the importance of parents in aligning proper development in their children.Footnote 20 The use of role play would be a part of the therapeutic intervention techniques of later analysts, but its appearance at the centre shows its early adoption. The influence of psychoanalysis in child psychology was also evident in the École des parents, an association that was promoted as a public good in the postwar period. The École became a mouthpiece for psychoanalytic ideas, especially about motherhood and the ideal expression of maternal love.Footnote 21 Psychoanalysis was an increasingly commonplace idea for defining the familial norms in France, especially in those families that did not meet these standards. The legacy of family policy, medicine and eugenics intersected with psychoanalysis in France to inform the treatment of autistic children and the role that their families played in that treatment.
Parent Blaming in the Early Narratives of Autism
With the postwar reliance on psychoanalysis as a method of defining and treating autism, narratives were central to understanding autism. As John Duffy and Rebecca Dormer note, autism diagnoses are a form of storytelling, which expresses a sense of mourning and sadness.Footnote 22 The importance of psychoanalysis provides an example of the narrative nature of autism from the therapeutic perspective, as therapy involved the construction of stories.Footnote 23 The intersection of these narratives with the general public appeared in autism literature, a corpus of texts that encompasses scientific studies, popular accounts of autism, biographies, prescriptive publications and stories from autists. For the purpose of this article, autism literature signifies mostly non-fictional accounts of autism, although as Sonya Freeman Loftis points out, fictional narratives shape the understanding of autism and reinforce stereotypes in equal measure.Footnote 24 Autism literature in France has different audiences, which certainly shaped the tone and tenor of narratives. The work done by psychoanalysts reached a wider audience, given the growing interest in psychoanalysis in postwar France, while the initial publications from parent associations had a much smaller circulation. Melanie Yergeau suggests that these narratives fix autistic behaviours as inherently problematic and deficient without necessarily understanding how they reify the assumption of treatment and cure through rhetorical turns that frame autistic responses as intentional without understanding the context or viewpoint of the autist.Footnote 25 Yergeau's observation illustrates how there is an inherent tendency to problematise behaviour as an example of the assumed combative family dynamic, especially in cases where the autist is non-verbal.
In the psychoanalytic treatment of autism, the silence of the subject often led the analyst to interpret silences through existing narrative forms rooted in psychoanalytic theory. The most celebrated therapists in France who worked with autistic patients in the 1960s were Maud Mannoni, Françoise Dolto and Fernand Deligny, and all but Deligny emphasised the importance of language and narrative as a method of understanding the internal lives of autists, even when they did not speak.Footnote 26 However, the approach often emphasised the critical analysis of the parents, especially mothers, as part of the process for treating the behaviours of autists, given the assumptions about the role of maternal behaviour as the genesis for autism. The structure and actions of families were put under scrutiny to discover the cause of the autistic behaviour, with some of the most famous cases being published for public consumption. During the 1950s and ’60s, this type of literature dominated the discourse and established the parameters of the narratives about autism, especially in the growth of ‘conversion narratives’. As a powerful story arc that emphasises a child's salvation from autism, often due to the extraordinary interventions of therapists, conversion narratives placed the therapist at the heart of the story, marginalising the child's interior life and the parents’ efforts to interact with their child.Footnote 27 The clinical nature of these approaches was rooted in the idea of the ‘normative’ family as well, with the lion's share of attention placed on the relationship between mothers and children.
The initial autism narrative of the family was populated by the ‘refrigerator mother’, to use a phrase that Kanner imagined after his consultations with families in his clinic at Johns Hopkins University in the 1940s. While the initial observations were based on his idea of the cold, distant mothers of his test subjects, it encapsulates broader notions of anxious or controlling mothers as well.Footnote 28 This phrase came to define how the actions and emotions of mothers were destructive to their children in the case of autism, popularised by the work of authors such as Bruno Bettelheim in the United States.Footnote 29 The emotional distance exhibited in these mothers led to their children's silence and withdrawal as a defence mechanism against alleged emotional trauma caused by the behaviour of the mother. The father was not seen in the same light as a cause for withdrawn behaviour, which underscores assumptions about the important emotional role placed on mothers within families.
In France, a famous early example that articulates the impact of this assumption was the case of Sammy Y, a young autistic working with famed French child psychologist Serge Lebovici and an Anglophone therapist, Joyce McDougall. With McDougall performing most of the therapy, the case of Sammy became famous thanks to a bestselling book chronicling Lebovici's and McDougall's insights on Sammy's behaviour. Each therapist placed a great deal of attention on the dynamics of the family as a powerful engine for Sammy's autism, which McDougall argued presented as an example of a classic Oedipal Complex during therapy sessions.Footnote 30 Sammy's family consisted of his mother and father, with some assistance from nannies and in-laws. In her notes from these sessions, McDougall suggests how Sammy's parents (who participated in the analysis) were responsible for his behaviours. Sammy's mother in particular was ‘not a maternal person’ and undoubtedly was alienated from her nine-year-old son as a result.Footnote 31 The parents’ reaction to the challenges Sammy presented was the culprit in Sammy's anti-social, ‘schizophrenic’ behaviour, and their efforts to place him in a special school were evidence that his family had caused his reaction.
For McDougall, much of Sammy's maladaptive behaviour was in response to transference from his mother's own anxieties about relationships. Mrs. Y's unfulfilled sexual energies were misdirected to Sammy, creating an unhealthy relationship with him that did not allow him to develop his own distinct personality.Footnote 32 In her conclusion, McDougall referenced her continued interviews with Sammy's parents and the ongoing family dynamic that fed Sammy's desire to retreat socially; however, she was optimistic due to what she perceived as important changes in both the father's and mother's behaviours.Footnote 33 While Sammy was central to the narrative of McDougall's work, the emphasis on transference meant that his family was implicated in his autism, the mother in her unconscious desiring for Sammy and the father in his absence and inattention to the situation. Once this transference was addressed, Sammy would be able to return to normative development, at least as McDougall argued.
While McDougall worked with Sammy, Françoise Dolto became a notable voice in the treatment of autism. Dolto had been a part of the group of thinkers who saw value in the use of psychoanalysis in child psychology while marrying its ideas to more traditional concepts of the family. Over the course of the rest of the twentieth century, Dolto would become a powerful voice concerning the treatment of autistic children and the role of parents (again primarily mothers) in the origins of the disorder. Dolto became the preeminent childcare expert in the postwar period, with her authority growing through her popular advice columns and radio programmes. As historian Richard Bates observes, Dolto was critical in the popularisation of psychoanalysis among the French and sought to introduce families to its ideas on the significance of gender roles within the family.Footnote 34 For her, the vital relationship to examine in cases of mental disorders was that of the mother and child, which speaks to the Freudian assumptions in her work that were coupled with her Catholic upbringing and conservative views on gender norms. A primary assumption for Dolto was the need for the father to be present and in charge of the family, with the mother in a subservient role for the family's health.Footnote 35 Her impact on the raising of children cannot be understated for postwar French society.
In her therapeutic practice, Dolto developed a treatment for disabled children based on play therapy as a critical intervention, although defined through psychoanalytic concepts and interpretations. In one of her more famous therapies, Dolto worked with Dominique, a fourteen-year-old boy who had exhibited signs of childhood schizophrenia, and the parent-blaming narrative was marshalled to explain the disorder. In her introductory notes to her retelling of the therapy, she immediately diagnosed Dominique's behavioural response as stemming from his parents’ lack of providing ‘the support, if only verbal or gestural, of human symbolization’.Footnote 36 In her intervention, Dolto noted how the arrival of a baby sister seemed to be the beginning of Dominique's problematic behaviour, especially given how the family appeared to replace him with his sister. This jealousy led to issues in the home and at school, more apparent after he turned six and entered primary school. She understood Dominique's behaviour within the narrative framework of the Oedipal Complex as well, with his actions being a logical response to the frustration of the loss of his power over his mother (through her attention to his sister) and the father's inattention.Footnote 37 While Dolto was critical of the father's alleged passivity in the family, her concern and attention were directed at the mother as part of Dominique's treatment, which she deemed a success. The reinforcement of the role of the mother was a primary characteristic of the autism literature from experts, validating the perception of parents as threats and justifying intervention.
One outcome of the predominance of this perception was the idea of removal as a form of therapy. The prototypical response to mental disability in this period was institutionalisation, which would then allow children to thrive under the care of therapists and analysts without the alleged caustic influence of parental anxiety. In the postwar period, there was an effort to reform the existing system to emphasise individual care, and yet much of that energy was focused on establishing more equable practices in asylums serving adults.Footnote 38 However, with mentally disabled children, this reform was much slower in developing. Educators such as Fernand Deligny hoped to create new forms of treatment through removal coupled with unorganised play therapy that would allow autistic children to develop social connections through explorations of nature.Footnote 39 Analysts such as Dolto and Maud Mannoni formulated new types of institutions to treat autistic children that trained parents in tandem with engaging the children.
Other similar conclusions were common among therapists and child psychologists, establishing a baseline for understanding how non-normative families (however defined) were creating the environment that was disabling children. The autism literature of the early postwar period set a foundation of parental blame as the primary condition of autistic behaviour, requiring therapeutic intervention. However, that therapy focused on the parents, and more often than not on the mothers, as the pathway to returning the child to a normative state. The collaboration of parents with analysts was key to the treatment narratives in these early works. In these examples, it was believed that when the transference of parental anxiety and psychosis was identified and addressed, thereafter the autistic behaviours would subside. Sammy's and Dominique's cases serve as studies of how intervention led to conversion, the return of the autistic child to normative development. The treatment of children was secondary, as the assumption was that the developmental disruption was rooted in the family dynamic and not the autistic individual. The publication of therapists’ experiences established the baseline of parental blame and shaped the perception of parents’ role in treatment as a target of analysis.
Parents’ Associations and Narratives of Resistance
In this same period, French parents of autistic children began organising to advocate for their children, despite the efforts of the psychiatric profession to identify them as the instigators of their children's condition. In the 1960s alone, several organisations were established to promote improved education and treatment of disabled children, especially as the number of disabled children continued to rise. The Union Nationale des Associations de Parents d'Enfants Inadaptés (UNIPEI) claimed over 41,000 members by 1969, up from 4500 in 1960.Footnote 40 Rather than eliminating autism outright as the existing narratives suggested, these groups advocated for services for their children combined with the argument that the unequal treatment that their children faced went against the ideals and laws of the French Republic, although they did not necessarily share the same approaches or philosophy.Footnote 41
Their advocacy took many forms – organising after-care programmes, connecting parents in regional networks, calling for increased spending for research, or pressing for greater government intervention in education – but it was primarily from the point of view of the parents, again reinforcing the idea of the parents as the primary arbiters in the disabled family. Both fathers and mothers were involved, although the leadership in these societies consisted primarily of men, and their advocacy went against the prevailing narratives focused on the negative family emotional dynamic leading to autism. In their literature, parents signalled their love for their children and the need for French society to accommodate their disability. These narratives emphasised the role of the family but, in most examples, the family was defined by the parents’ efforts and understanding of their disabled children. In some cases, these organisations used the narratives of family care to attract public attention to the plight they and their children faced as they attempted to navigate the French medical and educational systems.
Unlike the professional narratives of the analysts, the literature generated by these groups was primarily aimed at other parents of disabled children and not the general public. Most of the parents’ associations had their own newsletter, journal, or circular to provide information about new ideas, to offer interviews with medical specialists, or to catalogue the services available to mentally disabled children. The common focus of these groups was to signal to parents the ways to advocate and to report on officers’ efforts at advocacy, usually to governmental organisations or medical professionals. This approach meant that advocacy for the mentally disabled primarily focused on children and that the parents were the proper voice for their children, countering medical orthodoxy of the time. This framing illustrates one of the limits of the parental narratives and how the voices of the disabled factored into their literature.Footnote 42 However, medical professionals still dominated the larger discourse about mental disability through their own publications and media appearances, leaving the broader narrative about the role of families in the creation of autism largely unchanged.
An approach favoured by the editorial team of Nos enfants inadaptés – the official publication of UNIPEI – was the emphasis on the responsibility of the French state to address the inequalities experienced by French children, as articulated by their parents. With autism still considered a variant of schizophrenia, the psychoanalytic solution favoured by analysts meant that autistic people were treated as ill rather than as disabled. The UNIPEI ignored this conclusion, instead arguing that their children deserved better treatment than that offered. The approach of UNIPEI focused on how parents were critical in building support through the creation of educational centres that would help disabled children prepare for adulthood, often despite the state's lack of support.Footnote 43 The association's literature differed greatly from the highly theoretical approach of the analysts, instead forging a more legal and political approach that pressed for awareness campaigns to pressure the French government into acknowledging and supporting disabled children and their parents. One of the rhetorical strategies that UNIPEI relied on was to underscore the failure of the welfare state to provide for all French citizens, making the narrative about inequality and rights rather than emotions.Footnote 44
One main example of an advocacy campaign for these groups was the establishment of the Loi 30 Juin 1975, which codified the equal protection of disabled populations in education and employment. A major factor in this success was the public outcry after a fire at a residential institution that killed fourteen children in the village of Froissy in November 1968.Footnote 45 In its aftermath, the UNAPEI emphasised the need to recognise the rights of disabled children and the important role that parents played in protecting those rights, especially driven by the efforts of association president Robert Morin in the early 1970s. The fire galvanised the association to press for vital reforms through coordinated political efforts to gain support of members of the National Assembly, leading to the passage of the Loi 30 Juin 1975. In the pages of Nos enfants, the issues of social equality and disabled advocacy were firmly placed within the bounds of the family, establishing new narratives to articulate the story of autism.Footnote 46 While the efforts of these associations occurred during the moment of criticism known as antipsychiatry, the intentions of the different groups meant that parents were often at odds with militant activists seeking to close French asylums.Footnote 47 Parents positioned themselves as vital assets in the health of their children, hearkening back to more traditional ideas of the family as the authority concerning the treatment of children.
One of the elements of the narratives that Nos enfants developed was to imagine mental disability as a social problem, to the point of noting the failure in France to even have an accurate count of the number of disabled children under the age of five. In a report from 1967, UNIPEI detailed the number of mentally disabled children between the ages of five and nineteen at nearly 700,000 while noting that the official statistics did not account for disabled adults nor those under five which the group estimated to be 200,000.Footnote 48 UNIPEI was concerned about the lack of places available in the education system and the tendency of removal as part of the exigent therapy. Parents’ associations were trying to change the narrative to one of accommodation rather than mere treatment, suggesting the limits of the psychoanalytic intervention from their perspective. Their literature, however, avoided the trappings of the conversion narratives that populated the medical literature on autism; it also shows how the parents were engaged in ways that showed their concern and care for their children, along with a recognition of the challenges they faced, in large part due to social assumptions concerning disability.
Personal Narratives against the Establishment
With the publication of The Siege in 1967, Clara Clairborne Park introduced a new narrative into autism literature, one that focused on the emotional perspective of parents and their experiences with autism. Park vindicated the necessity of parents as central voices in autism literature. The Siege gives Park's perspective on the diagnosis of her youngest daughter Elinor (a pseudonym for Jessica) as she navigated the challenges of the medical and educational systems in the United States.Footnote 49 The narrative of Park's memoir exemplified the conversion narrative that had come to define much of the American literature on autism, but with the parent serving as the agent of salvation rather than the therapist.Footnote 50 While there is acceptance, the conversion narrative is about how the child overcomes autism to achieve a sense of normality in the world, reflecting elements of Lebovici and McDougall's Le cas Samy and Françoise Dolto's Dominique.
Published in French in 1972, Park's work spoke to French parents struggling against the French medical establishment to find new treatments and therapies for their children by identifying the limitations of psychoanalysis. Allies such as Alfred and Françoise Brauner had sought to find more ways of including parents in the treatment of autistic children, based on their assessment of American diagnostic culture, and saw Park as a powerful example of how parents could participate in an effective way.Footnote 51 The Siege chronicled Park's efforts to communicate with Elinor and was a rejection of the dogmatic idea of the refrigerator mother popularised by Bettelheim and his metaphor of the ‘empty fortress’ of autism. Bettelheim's ideas were in circulation in France by this point, so Park offered a new critique to those, although one that still put parents at the centre of the story and signalled ways they could dictate interventions for their children.Footnote 52
Park's work emphasised the unique role of parents in understanding the challenges that face disabled children, due to their emotional investment and potential as cyphers for their children's behaviours. The Siege details Park's efforts to reach Elinor and increase her engagement with the outer world. Against the prevailing narrative that parents’ lack of emotion led to autistic children, The Siege turns that idea around to show the profound level of emotional bonding and connection that parents had with their children, making them their ideal advocates. As Chloe Silverman notes, Park was instrumental in developing the notion of parental expertise in the United States, which changed the story of autism away from one of parental blame to one of parent advocacy and engagement.Footnote 53 Parents in France had also embraced advocacy, but in the 1970s they became increasingly interested in autism research outside of France, showing how they were developing a similar form of expertise as American parents. This expertise could be manifest in understanding the particular habits or language of their disabled children or, in the case of parents’ associations, the expertise in navigating the system. However, it meant that this new narrative pitted parents against medical professionals, a critical pivot as many associations had focused their attention on government intervention while trying to work with doctors and psychologists. Again, Park was important in advocating for the positive value of parents in the lives of disabled children, which was not medically assumed.Footnote 54 It also stressed that the family had an internal logic that could be best understood through the active engagement and participation of the parents, not their removal or marginalisation. The Siege served as a powerful example of how parents could be partners in their children's therapy, if allowed by medical professionals, and shows a move away from tragic narratives to optimistic ones, though it did keep parents at the core of the narrative and similar stories would emerge in its wake.
Supporters of Park's approach were, however, at odds with the continued social acceptance of psychoanalysis and the psychogenic origins of autism in France, amplified by a nationally televised documentary on the work of Bruno Bettelheim that aired in 1974. The documentary became a flashpoint for a public debate on autism, often with parents forced to respond to Bettelheim's claims of bad parenting.Footnote 55 While the French public appeared to accept psychogenesis, other translations would help to fuel the shift in narratives for parents, as more information on autism arrived from outside France to challenge the notion of the anxious parent as the instigator of autistic behaviour. Stella Chess, an American child psychologist, originally published Your Child is a Person in 1966; its French translation in 1977 appeared as more associations questioned the psychoanalytic orthodoxy. In his introduction to the French edition, André Michelet assured parents that Chess offered an alternative to analysis through the recognition and acceptance of the autistic condition as having nothing to do with the actions of the parents.Footnote 56 Much like Park's justification of the central role of the parent, Chess's work stressed the need for interventions to help autistic children navigate their lives instead of analysis in an effort to end their condition. And rather than opposing parents, Chess argued for collaboration in her work, something associations were seeking more of by the middle of the 1970s. The Association au service des inadaptés présentant des troubles de la personnalité (ASITP), founded in 1963, advocated a more holistic approach to treatment that emphasised special education and rehabilitation in tandem with therapy. While the organisation was not willing to dismiss analysis completely, its members postulated the need to combine it with education to help the development of autistic children.Footnote 57 The approach of emphasising education would again put associations at odds with the French government, as the funding to expand facilities needed support from the state, even as the entrenchment of psychoanalysis undermined the efforts of parents.
New Associations and Challenging Narratives
By the 1980s, parents articulated a more combative and engaged approach that emphasised their place in treatment and the outright rejection of psychoanalysis rather than working with professionals. French parent-centred life stories contributed to development of a new narrative of resistance, with parents characterised as the beleaguered advocates for their children against the medical establishment and often seeking to embrace new ideas and approaches instead of French norms. This autism literature had a new tone in comparison with the earlier literature of the parents’ associations, following the path of Park's biographical approach and her call for understanding the parents’ perspective. An important example of this French literature, Francine Fredet's 1979 Mais, Madame, vous êtes la mère, opens with Fredet recalling the titular exhortation at the time of her son Vincent's diagnosis as a type of accusation and expression of responsibility. As the immanent French historian of disability Henri-Jacques Stiker noted at the time, the combative nature of psychiatrists obfuscated the limits of their knowledge about autism and did little to help disabled children or their families, which he saw exemplified in Fredet's text.Footnote 58 There was a recognition in France of the incompatibility of the attitude of the culpability of the parents and the narrative of autism literature in Fredet's book.Footnote 59 Her story contains a number of common tropes found in other works of autism literature – the happy yet silent infancy, the caring of the parents, the anxiety and confusion of the diagnosis, the struggle with new behaviours and the transition into special education – but with a particular nuance increasingly absent in the Anglophone literature after Park: the emphasis on psychoanalysis.Footnote 60
Fredet chronicled her struggles with her non-verbal son Vincent and navigating a variety of institutions – public schools, instituts medico-pedagogiques (day clinics) and psychotherapy centres – as well as public places to get Vincent what she hoped was the best care. Professionals sought to understand her role in Vincent's condition, but Fredet did not exhibit the symptoms of the anxious mother. Fredet's struggles are evident – the idea of struggle is central to parents’ autism narratives. She detailed the early years of Vincent's life and his first diagnosis at two, noting that the family continued to provide a loving home and support for him in the face of his increasingly violent behaviour.Footnote 61 Despite her efforts, Vincent's situation became untenable by the time he was fifteen. He was institutionalised for three years, and the professionals who took over his care were adversarial to Fredet as a reminder of the durability of assumptions about the role of mothers in fostering autism. Eventually, the efforts of Fredet created divisions within her marriage, as exhaustion and frustration began to affect her and her husband's relationship and impact her daughter's behaviour. Madame concludes when Vincent was twenty-two and left home, moving to a residential hospital. Fredet uses the language of struggle to frame her narrative, ending with her hope that her story serves as inspiration for other mothers to embrace the struggle.Footnote 62 Unlike the examples found in the psychoanalytic narratives that had caught the attention of the French public, Fredet as a mother is highly engaged, active and inquisitive about her son's condition, seeking to participate where she can and advocate where she cannot. Fredet reveals how resistance to that model became a part of the emerging counternarrative of parents. The challenge ultimately for her was the dual conflict between Vincent's behaviour and the accusations from many in the medical community, the latter of which had become even more common in the 1970s.
By the 1980s, resistance had become central to the approach of the community of parents’ associations. New organisations, such as Pro Aid Autisme and Autisme France, emerged that were more combative in their response to the medical community and their advocacy of the rights of disabled children and the recognition of the struggles of parents of disabled children. Pro Aid Autisme, founded in 1985, advocated for a very specific intervention for autistic children that was not available or recognised in France – Treatment and Education of Autistic and related Communications Handicapped Children (TEACCH) – as part of its rejection of psychoanalysis.Footnote 63 Established by Pierre and Nicole Tourneille – parents of an autistic child – the association enlisted parents to become active participants in their children's therapy. TEACCH was developed by Eric Schopler and Gary Mesibov at the University of North Carolina in the early 1970s, and French parents wanted to import the method for use in France. Pro Aid Autisme championed the approach as evidence of the capabilities of autistic individuals to participate in education and develop the social skills needed to function in society. Moreover, the association reimagined parents as educators and therapists, directly providing interventions such as TEAACH to help their children thrive. Again, this approach put Pro Aid Autisme at odds with the prevailing ideas on autism and undermined the authority of analysts in their assessment of autistic children. Families in this situation were seeking to move beyond the psychological model to promote special education and integration of the disabled in French society.
Yet for the parents of Pro Aid Autisme the challenge with achieving this goal was the resistance of the psychoanalysis profession in France. The tenor of the association's journal moved away from the model of the 1960s and ’70s by setting the parents against the psychological medical establishment rather than merely advocating for state intervention. The editorial team recognised that the ideas of parental culpability had been disavowed due to the preponderance of research done on autism outside of France. One editor, Anne Roche, noted the specific passages in Bettelheim's The Empty Fortress (1967, 1972 in French) that compared parents to concentration camp guards and noted that parents’ wish that the child did not exist was key to understanding the autistic response as remaining influential in her experience.Footnote 64 Given the ‘quasi-monopoly’ of psychoanalysis in France, the association Autisme France advocated for their children's rights, just as UNIPEI had over a decade earlier, but with the addition of some parental rights as well. The four specific rights asserted were that of diagnosis, education, placement and information, with the latter being primarily for parents.Footnote 65 Certainly, this last right stressed the pivotal need for parents to have choices in the treatment of their children and notes the efforts of associations in the 1980s to introduce different interventions outside of psychoanalysis.
The conflict between parents and professionals certainly coloured these examples of autism literature as expressions of resistance and reveal how far parents had come in their reaction to blaming. Parents were challenged in their attempts to work within the system of experts who could at times be supportive while at other times were intent on separating mothers from autistic children as a therapeutic intervention. As Fredet emphasised, her care and love for Vincent were more valuable than the efforts of professionals, often putting them at odds. As an expression of the French medical system, psychoanalysis was another barrier for caregivers to overcome in providing the best care for their children. In parent-centred literature, there were few examples of resistance between parents and children despite the dominant interpretations of psychoanalysis. However, a later example points to how conflict might be common between parents and children: Françoise Lefèvre's 1990 semi-biographical novel Le petit prince cannibal.
Lefèvre was a novelist who brought a literary style to the increasingly common biographical approach of autism literature. She borrowed heavily from Antoine de Saint-Exupéry's celebrated novella Le petit prince as a metaphor for autism, as she imagined her son lived on a different (but perhaps violent) planet.Footnote 66 This would become a common analogy offered to explain the different experience of autism.Footnote 67 Lefèvre's narrative differs greatly from the more straightforward narratives of Park and Fredet, as Lefèvre ventures into fantastical storytelling while at the same time moving the focus away from her child's impact on the family. And rather than framing the story in empathic and inspirational terms, Lefèvre employed a more hyperbolic and fantastical language to give readers a sense of the challenges of raising an autistic child. For example, she notes how her son Sylvestre (Hugo in real life) ‘behaved like a terrorist’ while also noting that his ‘society brutalises maternal sentiment’.Footnote 68 Lefèvre rooted the drama of the novel in her own experiences with her son during the 1980s, including a scene in which Sylvestre asks his mother to call him by a new name, which Hugo discussed later in his own memoir.
Lefèvre fictionalises herself as Blanche in the story but in essence sets up a similar conflict to the other mothers in the previous examples. However, the major difference is that Blanche recognises that Sylvestre inhabits ‘a mysterious kingdom’ and that Blanche must engage with him through his own special language.Footnote 69 Unlike the world of doctors and families that characterise the autism literature of the 1970s, Le petit prince cannibale focuses on the special connection between mothers and autists not as a form of treatment but rather one of understanding and acceptance. Even with the conflict that permeates Lefèvre's narrative, there was still a rejection of the psychoanalytic model as a method of explaining that conflict. Instead, Sylvestre's resistance was couched within a narrative of the typical challenges of children aging and learning to interact with the world.
Parents, La bataille de l'autisme and Autist Narratives
The erosion of psychoanalysis’ place in autism literature did not, however, signal the end of its influence in the medical field or in French society. By the 1990s, autism was attracting more attention from the French state, but reforming the psychoanalytic response was slow, even with parents increasingly speaking out against its efficacy. Activists also noted the failure of the 1975 law to help mentally disabled people to fully participate as equal citizens due to the persistence of psychoanalysis and institutionalisation as the primary forms of intervention.Footnote 70 Conflict over psychoanalysis continued into the twenty-first century, manifest in the so-called ‘bataille de l'autisme’ (the battle of autism) between parents and analysts, in which parents’ groups sought increased attention from the French public about their rejection of psychoanalysis. Spurred by the release of Sophie Robert's documentary Le Mur, la psychanalyse à l’épreuve de l'autisme (The Wall, or Psychoanalysis Put to the Test on Autism) in 2011, the bataille de l'autisme shows how the autism narrative that emphasised parents moved into film to capture the continued conflicts between parents and analysts over the treatment of autistic children and highlighted parents’ frustration with psychoanalysis. Robert's film contrasted interviews with practising analysts with stories of parents struggling against the pervading view of blaming. The film was temporary banned from release in France due to legal challenges brought from several of the analysts in the film, but that order was eventually rescinded in 2014.Footnote 71
The ongoing conflict between parents’ groups and analysts was not merely in response to parent blaming but was also a debate over how the French state allocated resources and condoned methods that had fallen from favour elsewhere in the world. Even with the declaration of autism as a grande cause nationale in 2012, the continued dominance of psychoanalysis over behavioural approaches positioned France as an outlier in comparison to the rest of Europe and the world.Footnote 72 Parents, especially mothers, were concerned with the monopoly that psychoanalysis maintained in France and the continued influence of Dolto in defining the proper treatment of autism, which parents’ associations continued to critique.Footnote 73 It also spoke to the question of authority over the care of disabled children and what parties should have input into policy decisions that impact autistic people. The bataille de l'autisme was not just about different medical interventions but also about the role of parents in shaping French policy given the deep traditions of state intervention in the definition of the ‘normative’ family. The voices of experts have remained strong with the persistence of psychoanalysis, even as methods rooted in psychoanalytic theory such as le packing have come under increased scrutiny.Footnote 74 Nevertheless, the conflicting narratives in autism literature since the 1950s have primarily broadcast the voices of professionals and parents, with one group remaining marginalised: autistic people themselves.
More recently, another shift has appeared in autism literature: the introduction of the voice of autists. The previous examples privilege the perspectives of parents as defining so much of the family, but newer narratives point to new directions in how autism literature has become more inclusive of disabled voices. In a prime example, Lefèvre's son, Hugo Horiot, eventually wrote his own memoir of his youth, L'empereur, c'est moi, in 2013. His memoir was one of the first significant French-language examples of this new autism literature, but there were some important Anglophone forebearers, such as Donna Williams’ Nobody Nowhere from 1992 and Temple Grandin's Thinking in Pictures from 1995.Footnote 75 These two authors signalled the arrival of autistic voices in autism literature in the 1990s, although in France there was a slow response in autists sharing their own stories. Stuart Murray observes the persistent presence in these narratives of the ‘two worlds’ idea, that autism is part of a different world in conflict with the ‘normal’ world, and points to the tragic aspect of earlier literature.Footnote 76
L'empereur offers an impressionistic view of Horiot's life from about six years old, giving glimpses of his struggles in various schools and the support he received from his mother. His story opens with a potential explanation of his interest in playing with wheels, a common behaviour observed among autists, but presents it not as a pathology but as a way of him understanding the world as a series of systems. He reflects on the efforts of teachers to integrate him into social activities at his school and his hostility to these efforts: ‘You want me to open my mouth? To repeat the nonsense you tell me all day long? Like the other children? Like a parrot?’Footnote 77 Instead, Horiot emphasises the richness of his inner world and how his behaviour reflects his own interests and ideas rather than some attempt to retreat from the world for emotional reasons. Horiot presents critiques of his experience with psychoanalysts, with one telling example about his frustration with the toys in one therapist's office. The therapist had a castle but no other pieces, and Horiot kicked the castle to vent his anger. The therapist interpreted Horiot's actions as kicking his father, but he rejected that: ‘My papa is not in that castle’.Footnote 78
His memoir is a chronicle of his efforts to find his way in the world despite his struggles to understand its logics but also reveals how his mother, Lefèvre, was an important ally in those efforts. While inspirational in outcome, his tone is one of frustration and perplexity as he is trying to be himself against efforts of conformity and in many ways shows how autism literature is moving beyond the conversion narrative so common in the twentieth century. Horiot has nothing but contempt for those who accuse his mother of improper behaviour, and in her afterword, Lefèvre observes how she understood Horiot but could not tell others his words due to the dominance of psychoanalysis as an explanatory force. The example she focuses on is Horiot's burial of his first name, Julien, when he was six, which she did discuss in her novel. His attempt to change his name illustrates his awareness that trying to fit in the world requires him to be a different person, which Lefèvre later understood. Horiot provides an autist's perspective for recognising how parents worked with their children to raise them, counter to the psychoanalytic model, echoing the narratives of the parent-centred literature and the conflicts with the medical establishment.
Conclusion
The transformation of autism literature offers insights into the attempts to shift away from a collaborative model to a resistance model of understanding the dynamics within families in France. It also shows how families (and especially parents) remained at the centre of conflict concerning the treatment of autism and how parental advocacy played a major role in shifting the conversation, especially as these stories positioned parents in new roles in relation to their autistic children. The earliest examples emphasised the struggles of autistic children within their families and the importance of psychoanalysis as a method of ending that struggle, but with the emergence of parental voices in autism literature, the struggle was framed as the family against the French government and then the medical establishment in order to protect disabled children. Moreover, following the appearance of Park's translation, French parents’ growing interest in forms of autism treatment used outside of France led them to a more combative approach while at the same time emphasising the important role of parents as advocates for disabled children and the need to reject psychoanalysis. The appearance of autistic authors in the 1990s suggests the necessary arrival of new actors in the political debate about autism, perhaps further amplified by Horiot's continued advocacy of the rights of autists in his 2018 manifesto Autisme: J'accuse! This historical shift to new voices reflects the enduring distrust in France between professionals and parents due to the continued strength of psychoanalysis and reveals how parents and, more recently, autists have become vital in expressing that ongoing challenge through their personal stories.
Acknowledgements
The author would like to thank the anonymous readers of Contemporary European History for their feedback and suggestions, as well as Dr Maureen Rutherford for her feedback on an earlier draft and Dr Rebecca Scales for her suggestions. He would also like to express gratitude to Dr Jennifer Crane for her invitation to participate in this special issue. All translations from the French, unless otherwise noted, are the author's.
