Cruel optimism and ableist assumptions: Ableist discourse,the ‘good’ mother and autism

Abstract

Drawing upon Berlant's concept of ‘cruel optimism’, we examine the narrative of the website Generation Rescue and its president, Jenny McCarthy. We argue that the form of motherhood put forward, the medicalised warrior mother, is an ableist figure, and we examine ableism through the lens of cruel optimism. For the warrior mother, medical discourse sets the standard for the child, and discourses of motherhood set the standard for the mother. We contend that the simultaneous production of these discourses intersect to enable the production and subjectification of the warrior mother. This intersection is ableist discourse. Although framed as ‘good’ mothering, the version of motherhood presented is cruel to the mother and cruel to the child. The narrative offered presents the autism-free child as the child the committed mother desires and deserves; it also presents the autism-free child as obtainable. This attachment to possibility embeds mothers in a never-ending form of intensive motherhood, her the agent of recovery who cannot accept the child she has and her child the object of continual experimentation that can be normalised via commitment and consumption.

Via a lens of cruel optimism, we explore how dominant constructions of disability (specifically autism) and motherhood have come together. The result is a troubling and cruel representation of both autism and how mothers of autistic children are invited to negotiate this subject position. We argue, employing celebrity mother McCarthy as an example, that the subject position of the “medicalised warrior mother” is enabled by ableist discourse that is cruel to both mothers and their autistic children. To do this, we first provide an overview of Berlant's (2006, 2011) theory of cruel optimism. We then introduce dominant discourses surrounding autism, followed by the emergence of the ‘warrior mother’ and her global campaign against autism. In this regard, we focus on the rise of Jenny McCarthy and her website Generation Rescue as reflective of this emergence.

Cruel optimism

For Berlant (2011, p. 24), ‘cruel optimism is the condition of maintaining an attachment to a significantly problematic object’. Berlant (2006, p. 21) describes cruel optimism as follows:

…a relation of attachment to compromised conditions of possibility. What is cruel about these attachments, and not merely inconvenient or tragic is that the subjects who have x in their lives might not well endure the loss of their object or scene of desire, even though its presence threatens their well-being ….

Cruelty is not simply the unattainability of potentiality. As argued by Berlant (2011, p. 1), ‘cruel optimism exists when something you desire is actually an obstacle to your flourishing’. Thus, the very desire to attain potentiality, and the strength of the attachment, limits the individual and limits other potentialities – other opportunities or possibilities ignored or diminished. ‘“Cruel optimism” names a relation of attachment to compromised conditions of possibility whose relation is discovered either to be impossible, sheer fantasy, or too possible, and toxic’ (Berlant, 2010, p. 94). As Berlant states, ‘When we talk about an object of desire, we are really talking about a cluster of promises we want someone or something to make to us and make possible for us’ (Berlant, 2006, p. 20). For autistic people, and notably the parents of autistic children, this concept of cruel optimism has particular resonance. We now consider the nature of autism, and how is it represented, as to why this may be the case.

Autism and the medical model

The medical model of disability is the dominant model in autism studies (Graby, 2016). In contrast to the social model, which removes focus ‘from the individual impairment’, shifting gaze ‘towards societal structures’ (Woods, 2017, p. 1094) and argues that autism is a form of human difference (McGee, 2012; Rosenblatt, 2018), the medical model characterises the individual as disabled and in need of medical intervention (Clarke & Van Amerom, 2008). Embedded in ableist assumptions autism discourse produced by the medical model is deficit-focused and represents autism as an illness, disorder or disease (Chamak, 2008; Jones & Harwood, 2009).

The conflict between the medical and social models of disability impacts many different spheres of disability advocacy (Waltz, 2012). Charities and advocacy groups associated with autism often fall into two categories: those that advocate for inclusion, such as the Autistic Self Advocacy Network of Australia and New Zealand (ASAN), Autistic Women and Nonbinary Network (AWN), and Autistics 4 Autistics (A4A), and those embedded in the medical model, such as Defeat Autism Now (DAN) and Generation Rescue, which do not advocate for autism but rather advocate for its elimination. Autism charities originated in the 1950s, with films made by Bruno Bettelheim. Bettelheim, whilst serving as the director of the University of Chicago's Orthogenic School for ‘disturbed children’ from 1944 to 1978, argued that autistic children were incomplete, that something was missing and that the child must be freed by taking purposeful action (Sarrett, 2011, p. 146). Whilst there has been a push in recent years towards the social model (Levitt, 2017), much of the discourse is, like the charities themselves, dominated by established others (e.g. established others such as professionals and/or parents) who are neurotypical or allistic (non-autistic). Autism is thus represented as a problem – with the charity as the solution.

Warrior mother

Whether cause, cure or treatment, autism discourse has consistently linked itself to the role of the mother. Early studies by Kanner (1943), Asperger, and Bettelheim described mothers of autistic children as anxious, obsessive, ‘refrigerator mothers’ (Jack, 2014, p. 24; Kanner, 1943, p. 245; Langan, 2011). When Kanner (1943) first published the landmark paper ‘Autistic disturbances of affective contact’, medical experts argued the origin of autism to be due to the most dominant figure in the early years of childhood – the mother. During (and beyond) the 1960s, parents were part of experiments designed to produce and reform the abnormal child (Skubby, 2012). Rather than being blamed for producing the autistic child, mothers would be enlisted as part of the therapeutic process. Still, this recruitment had little, if anything, to do with the mother-child relationship. Rather, mothers were trained and surveilled in order to deliver the established approach set by assigned practitioners (Skubby, 2012).

Prior to the 1990s, there were only a handful of parental experiences published (Langan, 2011). The rising numbers of autism diagnoses, and the void of an agreeable truth regarding the condition, have seen the new millennium filled with parents (especially mothers) ‘blogging, writing, networking, talking and campaigning for and about their children's condition’ (Chivers Yochim & Silva, 2013, pp. 406–407). The new millennium has seen a change to not only the mediums through which mothers of autistic children voice their thoughts, but also the claims being made. Previously, parents had limited their objections to areas such as psychogenic theory (e.g. that of “the refrigerator mother”), but they now challenge the ‘epidemiology, aetiology, pathology and therapeutics’ proposed by ‘mainstream scientific and medical authority’ (Langan, 2011, p. 198).

A prominent post-millennium archetype for mothers of autistic children is the warrior mother. Warrior mothers ‘despite the high personal and financial costs to themselves and their families’, wage battles against ‘social and political forces to gain medical and educational interventions for their children’ (Sousa, 2011, p. 220). Regarding autism, the message and role of the warrior mother is not simply that recovery is possible, but one ‘of recovery at all costs’ (Douglas, 2013, p. 172). She is ‘supposed to be a child-saving hero, expected and encouraged to do anything and everything in pursuit of normalcy’ (Waltz, 2015, p. 355). Guided by instinct, and depending only on herself, the ‘good’ mother (of the autistic child) must undertake the immensely expensive and labour-intensive task of navigating the numerous claims to knowledge made within the complex landscape of knowledges about autism (Chivers Yochim & Silva, 2013; Lilley, 2011; Williams & Murray, 2015) – an ‘independent’ figure-making individualised choices. As she navigates the competing claims and controversies offered to mothers surrounding issues such as schooling, treatment and therapy, the warrior mother must engage in medicalised motherhood – a process that is skilled and scientific (Lee, 2008) and attached to the acceptance of the bio-medical paradigm (Whitmarsh, 2008). Paradoxically, whilst the medicalised warrior mother positions herself as one who rejects and challenges mainstream medical authority, she must engage in medicalised motherhood and is embedded within the same ableist discourse and acceptance of the bio-medical paradigm (Whitmarsh, 2008).

Methodology

The study employed a qualitative netnographic approach. Concerned with the study of online content, cultures and communities, netnography is a modified ethnographical approach conducted entirely online (Kozinets et al., 2010; Morais et al., 2020). Drawing upon customary ethnographic procedures, Kozinets (2010) outlines four methodological stages/procedures for netnographic research: entrée, data collection, analysis and interpretation and ethics.

Entrée: During the entree stage, the researcher identifies an appropriate online community and formulates their research questions (Kozinets, 2010). Whilst the definition of boundaries regarding the research field can present a challenge for netnographic researchers (Kulavuz-Onal, 2015), the purpose of netnography is not to pursue everything written on a topic but rather identify and choose interesting parts that can be collected so as to argue for a central tenet. Kulavuz-Onal (2015) proposed it is the decision of the netnographer to decide what will, and what will not, be included when determining the field of study. Similar to Morgan (2008) and Williams and Murray (2022), this study used a single website for data collection. The community selected for analysis was the now defunct Generation Rescue website and its President Jenny McCarthy. By selecting McCarthy and Generation Rescue, we aimed to record and analyse a key figure and organisation representative of the ‘emergence of “autism mothers” as a new category of identity’ in the late 20th and early 21st century (Douglas, 2013, p. 167). The intent was to contribute to wider genealogical studies of autism and mothers of autistic children with a historical point-in-time examination. Given that genealogical studies aim to ‘record the singularity of events outside of any monotonous finality’ (Foucault, 1971, p. 139), the events that have a particular impact must be understood within the context of their environment at the time. McCarthy was an early and prominent ‘autism mom’ figure who, in 2007, published her first of many books, Louder than words: A mother's journey into healing autism, which would have a major impact, particularly in the USA (Langan, 2011). Bolstered by McCarthy's subsequent appearances on popular television broadcasts including Oprah, Larry King and CNN, the book would rapidly lead ‘other moms of autistic children in what was described as a massive movement of healing’ (Chivers Yochim & Silva, 2013, p. 417). Whilst for many years the warrior mother narrative promulgated by McCarthy and others could be found across various mediums (e.g. books, Internet sites, magazines, television), today it is mostly relegated to select portions of social media (i.e. autism parent online groups) and certain conferences. However, given McCarty's prominence as a public figure and her leadership role within the organisation, the Generation Rescue website is a seminal data source regarding the warrior mother ideology. The site contained access to, and promotion of, her various books and interviews, thus serving as a centralised medium for the examination of the narrative offered by McCarthy. In relation to contributions to further genealogical works, using McCarthy and Generation Rescue offers an opportunity to record insights that otherwise will be lost.

The identification of Generation Rescue as the online community of interest to examine the concept of cruel optimism, autism and motherhood thus helped guide the three overarching research questions of the study:

How are autism and mothers of autistic children represented on Generation Rescue?

What object of desire is being promised by McCarthy and Generation Rescue and how is this object made possible?

What about the attachment is cruel and what are some of the discursive and subjectification effects produced? These effects are defined as:

- Discursive effects: effects that follow from the limits imposed on what can be thought and said, closing off other solutions (Bacchi, 2009).

- Subjectification effects: the ways in which subjects and subjectivities are constituted in discourse (Bacchi, 2009).

Data collection: As part of a wider study, textual, audio and visual data across the Generation Rescue website were collected. A ‘pure’ netnographic approach was employed whereby data collection was conducted entirely within the online space with no off-line ethnographic research included (Kozinets, 2010). Furthermore, and consistent with the aims and approach of netnograghy outlined by Kozinets (2016) (that netnography emphasis is primarily small data), the information provided in external links available on the site was not included.

Data was collected via an extant (Salmons, 2016), or passive, approach. This approach meant that the authors had no direct contact, or active engagement, with the site or its users. Instead, the approach was to passively monitor, read and copy data from the site (Alavi et al., 2010). As the goal was to understand how autism and mothers of autistic children are viewed, applying a passive approach allowed for data to be collected in a manner that was unobtrusive and non-influencing (Pollok et al., 2014, p. 2). Textual and visual data were copied and pasted into a Word document, whilst videos were transcribed, including descriptions of background text/imagery, and inserted into their relevant place within the document.

Analysis and interpretation: Before beginning coding, the first author engaged in a process of reading and re-reading the data collected. This was done to strengthen the validity of the approach and assist with familiarisation of the data. Following familiarisation, data analysis employed a three-stage process. Stage one followed an open coding process (Creswell et al., 2007). This allowed the authors to identify patterns and categories within the data. Both manifest coding (to improve reliability) and latent coding (to improve validity) were employed during this stage (Neuman, 2011). Manifest coding was literal in its interpretation and key terms identified were subsequently electronically searched across the data pool (e.g. ‘vaccinations’, ‘hope’, ‘cause’). In contrast, latent coding involved looking for underlying and/or implicit meaning in the context of the text (Neuman, 2011, p. 365). Stage two of analysis involved drawing upon the tenets of cruel optimism (Berlant, 2006) to conduct a deductive thematic analysis (Clarke & Braun, 2013). Finally selective coding was used to identify specific cases/quotations that illustrated the main themes identified.

Ethics: Each of the stages outlined by Kozinets (2010) were undertaken in accordance with research ethics. As noted by Langer and Beckman (2005), when the researcher(s) are not an active participant in a specific site of interest, disclosure of the researcher's presence within publicly available communications is not required and may indeed endanger the inhibited responses and unobtrusiveness of the study. Similar to the approach taken by Williams and Murray (2022), the information gathered was not initiated by the researchers and responses considered to be in the public domain. Accordingly, specific consent from the respondents was not required.

Findings and analysis

We begin this section with an overview of the website itself. We identify how the promises of hope and ‘recovery’ offered by Generation Rescue are embedded within ableist understandings of the type of child one should hope for and work towards. We also identify how recovery is privileged over development and the autism-free child the object of desire being promised. We then provide an analysis of the narrative offered by McCarthy and how the intertwined discourses of autism and motherhood within this narrative produce an ableist mother figure. We demonstrate how McCarthy and Generation Rescue construct binary hierarchies of both autism and mother. The non-autistic child is privileged, and unquestionably more desired, compared to the autistic child. Similarly, the mother who works hard to reclaim this child is privileged over those who do not, and we illustrate the cruelty of this attachment. The third section of analysis focuses on the ‘how’ – specific techniques and procedures McCarthy and Generation Rescue put forward as evidence or steps for recovery. We demonstrate the cruelty of this attachment – both for the mother and the child – and how the continuing attachment to this possibility is embedded in both the medical and “good mother” discourse. In the final section of the analysis, we demonstrate how the object of desire is made possible with a brief examination of McCarthy's celebrity status, and how suggestions by McCarthy and Generation Rescue regarding what causes autism, makes the spectre of autism a concern not only for mothers of autistic children but for all mothers.

Generation rescue

Before even logging on, the name of the website sets up a certain dynamic. The word “Rescue” postulates that someone is in trouble, taken and in need of saving. The idea of rescuing is not new to autism discourse and mirrors the narrative populated by Bruno Bettlelheim in works such as, “The Children Who Never Were” and his most famous work, The Empty Fortress: Infantile Autism and the Birth of the Self (1967). Although questioned by the scientific community, Bettleheim's work was targeted towards a mass audience and his positions became the accepted explanation in popular, and indeed some professional, circles (Severson et al., 2007, p. 65). Bettleheim's work suggested that autistic children were incomplete and that the child must, and could, be freed by taking purposeful action (Sarrett, 2011, p. 146). The idea of the ‘taken child’ invokes the grief and fear of parents and has been used by charities who liken autism to that of a mass kidnapping and a national emergency (Stevenson et al., 2011). The image of the taken child portrays autism as something that is there but needs to be brought back. The rescue narrative is further entrenched by the fact that, when logging onto the Generation Rescue website, readers are provided with the slogan – ‘Hope for recovery’. The slogan itself represents the ableist discourse the site offers (recovery) and the beginnings of the promise being made (hope). The use of the term recovery is consistent with the ableist view advocated by Campbell (2009): that autistic children are damaged in some way and a more desirable existence for both child and parent is possible, desired and hoped for. In addition to the organisation's slogan, the first image on the homepage is a smiling child, with the banner, ‘Recovery is real’. This statement brings the idea of ‘hope’ for recovery from being aspirational to attainable (or possible). Moreover, the addition of the word ‘real’ reduces the space between the child the mother currently has and the one she may hope for; essentially a promise of the desired object, the autism-free child. Whilst this position directly contradicts the medical discourse both ‘Hope for recovery’ and ‘Recovery is real’ reflect presumptions of ableism – which it is undesired, unacceptable and ‘should the opportunity present itself, to be ameliorated, cured or indeed eliminated’ (Campbell, 2009, p. 213).

When clicking on the recovery tab, viewers are offered the following dialogue as representations of recovery:

Generation Rescue believes in autism treatment that brings hope for recovery.

- A 5-year-old girl becomes fully potty-trained.

- A 6-year-old boy is finally sleeping through the night.

Families affected by autism do not take these milestones for granted. They are the daily victories that prove there is hope for recovery (Generation Rescue).

Recovery is represented as progress. ‘Hope for recovery’ is not framed within a context of non-linear development, but a modernist perspective that ‘hope lies in the gradual, scientific production of improved approximations of truth’ (Danforth, 1997, p. 94) – the truth being the ability to perform certain desirable tasks. These desirable tasks are established by ableist norms and used as a form of ranking to determine essential aspects and targets of able-bodieness and childhood development (Campbell, 2009). Generation Rescue states that achieving these tasks is ‘proof’ that the child can recover from autism. Recovery is privileged over development. If it is development, they may learn new skills but will remain autistic. Furthermore, framing these milestones as evidence of recovery presents a continuing form of attachment to the possibility that the mother can achieve the ultimate end goal she desires. Put simply the ableist version of the child she hopes for, the object of her desire, is coming into being.

Desires of the mother

For there to be hope there must be something to hope for – in essence an ableist vision or understanding of what a child should be. The opening message provided by McCarthy, titled: ‘A message from Jenny McCarthy: Generation Rescue President’, sets the scene for how autistic children are viewed:

It's too common a story, becoming ever more common. A parent sees glimpses of a vibrant young child - their child. They know these glimpses are who their child should always be. (McCarthy)

McCarthy's opening statement is an example of the trapped child narrative popularised by Bettelheim in the mid-20th century. McCarthy talks about who a mother's child should be, essentially offering two different versions of the child. A trapped child who is present but not wanted, and the true child who is not present but the object of desire. The distinction between the child she has and the child that should be represents the divide articulated by Campbell (2009, p. 215) – a ‘divide between a so-called perfected or developed humanity and the aberrant, the unthinkable, underdeveloped and therefore not really-human’. That an autistic child is undesirable is reflected in McCarthy's summary of the diagnosis:

I remember the doctor saying I’m sorry he has autism and there's not much you can do, I died in that moment … I thought oh my god this can’t possibly happen to me … I wished to God the doctor had handed me a pamphlet that said, ‘Hey, sorry about the autism, but here's a step-by-step list on what to do next.’ But doctors don't do that. They say ‘sorry’ and move you along. (McCarthy)

The autistic child is presented as a negative first by the doctor. The words ‘I’m sorry’ position the coming information as negative. Similarly, the reaction of McCarthy that she ‘died in that moment’ portrays a grief-stricken mother. Both representations reflect ableist assumptions of how the mother's child, and indeed humans, are supposed to be. Autism is represented as a tragedy and the mother devastated that this has happened to her (‘this can’t possibly happen to me’). Given that dominant representations of autism deliver a consistent message that a mother's life will be an ongoing struggle (Jones & Harwood, 2009), McCarthy's reaction is not unique. Moreover, feeling abandoned by the medical establishment is a common experience for mothers’ post-diagnosis (Clarke, 2012). Whilst they initially seek help from doctors, there is often little help forthcoming and thus they turn to other avenues (Clarke, 2012, p. 193). For McCarthy, this avenue was initially prayer:

I went home … I cried … I started to get angry with the doctor who told me there was nothing you can do. How you can possibly cut off hope, miracles happen every day. So, I had a conversation with God … God if you help me and you show me the way to heal my boy, I promise I’ll teach the world how I did it. (McCarthy)

The idea that her boy needs fixing is another example of how the autistic child is viewed – broken and in need of repair – and again reflects an ableist view. Furthermore, this statement offers a clear example of how, although it is the medical discourse that produces the autistic child as knowable, the lack of hope offered by the same establishment is a starting point for an opposing strategy.

If one is to contradict the dominant medical discourse and make the desirable possible, there needs to be another discourse powerful enough to be viewed as “true”. For McCarthy this is the good mother discourse, a discourse currently embedded in intensive motherhood and underpinned by neoliberalist assumptions that any social or health-related issue can be explained and/or fixed, based on the quality of parental care provided (Smyth, 2012, p. 2). So, whilst doctors are represented as uncaring, McCarthy is the mother who never stopped trying and, with the help of Generation Rescue, succeeded in recovering her true child:

I read every single testimonial Generation Rescue posted. I tried every single option, followed every single piece of advice. I did this very methodically, and very privately—just me, a mother trying everything to recover my son. Eventually, wonderfully, I succeeded. (McCarthy)

When claiming her success, McCarthy talks about how her child is now healthy and a typical little boy – it is autism that makes them unhealthy:

ADHD yeah, autism no, after one year of treatments he became a typical, healthy happy little boy. (McCarthy)

That the child is now healthy extends understanding of autism from ‘simply’ difference to disease. A similar ableist normality, what is ‘the same’ or ‘dominant’, is told by another mother on the site:

He was able to have conversations with us, show emotions and became like his peers. He is not even on the spectrum anymore. He does have ADHD, but that is nothing compared to the utter hell we went through for a few years there. (Kathy)

Drawing on comparisons between other children ties into Western biomedical frames of normative identity (Douglas, 2013). Comparison to peers is used to determine what the child should be. Within the above description by Kathy, we also see the consequences of having the trapped child present – life is ‘utter hell’. Types of difference are ranked by Kathy, and whilst her child may have ADHD, that is nothing compared to the hell that is the trapped autistic child.

In addition to how a mother feels about an autism diagnosis, we start to see how mother attachment becomes mother responsibility. Responsibility and ‘good’ motherhood are not unique to autism or the warrior mother. The normative subject position of the mother as a citizen is entangled within the idea that, whether social or health-related, numerous problems can be explained and/or fixed based on the quality of parental care provided (see Smyth, 2012, p. 2). Embedded in the notion that mothering should be an intensive activity (Hays, 1996), the role of the mother to an autistic child is clearly defined – she is ‘responsible and absolutely dedicated to making things better for her child’ (Clarke, 2012 p. 192). As such, positive representations of mothers of autistic children are dominated by those who challenge doctors, schools and health systems and act heroically to found schools and charitable organisations to provide for their kid and others ‘suffering’ a similar fate. Part of McCarthy's good mother narrative is ensuring that others know she got straight to work:

When my son was diagnosed … That very same night I got on the computer and went to work. It really is work - and since you’re reading this, you most likely already know that. (McCarthy)

McCarthy interpolates the mother as hard working. One doesn’t become McCarthy's version of autism mother by virtue of her child's diagnosis – she becomes the ableist figure by recognising her “call to duty” and getting to work:

I looked far and wide … I like to use a train analogy. There's Train A: You do absolutely everything you can for your child, no matter what anyone tells you. There's also Train B: Woe is me. (McCarthy)

Just as there are two types of children described by McCarthy, there are also two types of mothers. Mothers of autistic children are either Train A or Train B. There is no C, D or E; one either does everything they can for their child or wallows in self-pity. The only commonality between the types of others offered by McCarthy is an assumed negative reaction to having an autistic child. This assumed commonality reflects Campbell's (2009, p. 215) argument that there is yet to be any established entitlement for the unconditional existence of disabled people. Similarly, it also suggests that it is impossible for mothers to not be devastated by autism, with desires of motherhood not separate from any conditional expectations of the type of child she has.

Making possible

There is a certainty offered by McCarthy. Recovery is real. At times a simple narrative, at other times quite detailed. It is vague regarding a specific blueprint, yet specific regarding progress and results. The simplicity of the process McCarthy describes is highlighted below:

It was changing his diet … giving him vitamins … pulling out rugs, changing the paint, getting clean air. (McCarthy)

In addition to its simplicity, the process is described as non-invasive. In contrast to treatments from the 1960s, experiments that subjected children to experiments involving ‘pain, and punishment’ (Skubby, 2012, p. 368), the procedures listed by McCarthy appear simple, non-invasive and something one does not require a high level of scientific or medical expertise to perform.

When discussing implementation, the process remains vague but the progress towards recovery is specific:

I started the diet and within two weeks Evan said a five-word sentence and a few weeks after that after starting vitamins Evan said a seven-word sentence, then after that, I detoxed him and implemented many more therapies and within one-year Evan was undiagnosed. (McCarthy)

What are presented as simple processes are also represented as having almost immediate measurable results. McCarthy isn’t specific about the types or quantities of vitamins used. She is even less specific about the strategies applied. Her approach is simply ‘many more therapies’. McCarthy then provides a measurable claim of recovery – that her son was undiagnosed. Although it is medical experts she claims to defy, it is the medical classification of autism that she relies on to qualify her success.

The stories of other mothers presented on the website were similar to McCarthy's. A main point of difference, however, was the listing of specific therapies utilised. The lists of therapies presented demonstrates the work ethic and commitment of the Train A mother whilst simultaneously highlighting the confusing, complex and vague nature of the approach:

GF/CF diet; Specific Carbohydrate Diet; mild hyperbaric oxygen therapy for huge speech gains; Methyl B12 injections for more speech improvement; chelation to remove toxic metals; anti-fungal therapies; anti-viral and anti-fungal medications; vitamins, minerals and essential fatty acid. Traditional therapies have also helped a lot, including play therapy, behavioral therapy (ABA - Discrete Trial Training, Natural Environment Training), speech therapy, occupational therapy and a social skills group. These therapies have been intensive, totalling 30–45 hours per week, and he has always had additional inclusive experiences with typical peers including Music Together and dance classes. (Holly)

Such approaches highlight how embedded in practices of intensive mothering the medicalised warrior mother becomes. The extensive list of helpful therapies represents how this type of mother should spend her time. Rather than time with, she spends time (experimenting) on. Although intensive motherhood dictates all mothers should spend ‘quality time’ with their children (Hays, 1996; O’Reilly, 2016), rather than engaging in classic activities such as French or ballet lessons, the medicalised warrior mother spends her (and her child's) time engaging in therapy and experimenting with treatments. Essentially, rather than trying to make their child better than other children, they aim to make them like other children.

Whilst highlighting how intensified this form of intensive mothering is, it again highlights how continuous attachment to possibility is made possible. Hope is offered and the mother should never give up:

When you don't see the changes you're hoping for, don't give up! Change strategies, diet, supplements, doctors, therapies, etc … Keep visualizing the future you want for your child and your family. There is always hope. (Holly)

This hope is inherently cruel as there is no endpoint offered other than recovery. There is no limit to the strategies one should try. The continual commitment to treatment and recovery is framed as responsibility. Moreover, whilst the mother remains attached to the possibility of hope, the child remains the site of continual experimentation and the incomplete version of the child that is the object of desire. As such, in addition to cruelly representing autistic children as wrong, this rhetoric also represents them (the autistic child) as the reason their families do not have the life they desired.

To be a successful Train A mother, mothers must not only commit time, but also money. Mothers must engage in practices (costly in the emotional effort, time, and financial commitment) that actively seek to eradicate the child they have or be thought of as lazy and uncommitted, to have failed as mothers. Of concern is that this approach positions the non-autistic child as something that can be bought. Ideas of ableism are thus commodified, and, via consumption, the autistic child is transformed into something of greater value – the true child.

Making possible for all

In addition to statements that recovery is possible, we argue that this possibility gains traction and reach due to the celebrity status of McCarthy and social capital which provides access to other influential resources. McCarthy uses Generation Rescue to make visitors aware of other sources who have listened to and promoted her story. In a video on the website, we see clips from popular television shows where McCarthy is described in the following terms:

The Dr's: ‘She has made it her personal mission to encourage parents and give them new hope for recovery’.

(20/20): ‘For Jenny McCarthy, it was a tough call. She decided to defy the experts and try to find a treatment herself’.

Including well-known media sources and personalities makes viewers aware of how McCarthy's quest is viewed by others. As a singular entity, McCarthy's position as an expert has little capital if there is no surrounding group to protect her message. Seeing McCarthy on shows available to mainstream audiences makes her message knowable without necessarily seeking it out. That her story is listened to and promoted via mainstream platforms increases the credibility of the claims being made.

A final and important part of the narrative is that something happened to make the child autistic:

This autism community can show you enough evidence that something is going on with our environment that is causing this disorder … and they all said the same thing, all these parents said that something happened. (McCarthy)

The introduction of external factors expands the offerings of ableist assumptions presented. Rather than simply assuming that autism can and should be cured, it is also something that can and should be prevented. As we are made aware of by McCarthy, this true child was not always trapped – something happened to them. They have been taken by autism. Autism thus becomes not only something to hate but to fear:

I knew my greatest accomplishment in this life was being his mother. Little did I know at the time, that the future held something else for us to accomplish together. That was to bring him back from the disorder that took him…….autism. (Sabrina -ellipsis in-text)

The fear that autism may take a mother's true child is further entrenched by the rate at which autism is described to be increasing. McCarthy talks about it being a ‘too common a story’ that is ‘becoming ever more common’. In a video placed above McCarthy's message as President, information is presented to the viewer with statistics such as:

‘In 1983, 1 in 10,000 children developed autism’ - ‘Today 1 in 91 children will develop autism’.

In addition to the rate of increase, autism is represented as something children develop. This raises the question: if you develop it, how do you develop it? Of the seven stories of recovery presented on Generation Rescue, all seven mention vaccinations as what they believe to be either the sole or a partial cause of their child's autism:

Vaccinations. (Kathy)

Environmental toxins, including vaccines, dietary toxins and lead poisoning. (Holly)

Whilst vaccinations are represented as one of many causes for ‘losing a child to autism’, they are not the only possible reason given for autism taking a true child from their mother. There are others and plenty of them. One thing they have in common is that they are all external factors. Something happened to them. Attributing autism to external factors means it is not enough to have a ‘successful pregnancy’; all mothers must continue to be aware of and appropriately manage everyday risks such as paints, pesticides, food and, of course, vaccinations. The disciplinary power of motherhood works not by restraint but by creation. The panoptic gaze of motherhood represents a ‘state of conscious and permanent visibility’ (Foucault, 1977, p. 201) and assures the automatic functioning of power and, in particular, the power of the good mother discourse which sees women wanting to be good (Goodwin & Huppatz, 2010). With intensive mothering, everyone watches us, we watch ourselves and we watch ourselves watching ourselves. Motherhood has become a psychological police state (Douglas & Michaels, 2004, p. 6). McCarthy and Generation Rescue associates blame and reward in a self-serving manner. McCarthy's narrative attributes cause to external factors (i.e. the environment and vaccinations) and attributes success to internal factors (her instinct and hard work). This rhetoric both encourages and assumes all mothers as ableist figures and continually disseminates autism as a tragedy that can and should be avoided.

Summary/key findings

This study asked how representations of autism and motherhood were put forward, the objects desired, how these were made possible and some of the effects of this production. Key findings below are summarised in relation to our research questions.

1) How are autism and mothers of autistic children represented on Generation Rescue?

Generation Rescue presents autism as undesirable, avoidable and something that can be eradicated by hope, hard work and consumption. Ableist assumptions are evidenced in the representations of the autistic child as less than human; a child trapped by the villain that is autism. In addition to being trapped, the autistic child was also represented as taken. Autism was represented as something that has happened to a child. They were not born autistic. In addition, the autistic child was not considered to be a ‘real’ child. Ideas of acceptance, human diversity or that society may play a role in determining what is appropriate were absent.

Mothers were represented as dedicated and hopeful or ‘woe is me’. Regardless, ableist assumptions of what children should be, and the type of child a mother should have, meant that all mothers were represented as devastated by their child's diagnosis of being autistic. Embedded within discourses of intensive mothering, the good mother was represented as an ableist figure who can, and should, do anything for their child. She loves her child and would do anything for them, but it is not the child she has she is fighting for. She fights for the child she does not have.

2) What object of desire is being promised and how is this object made possible?

The object being promised is the mother's true child – the true child is who the mother intuitively knows they should be. The autism-free child is the object of desire and this object has been taken and is now trapped. The promise of recovery is made possible by becoming an ableist figure of hope – hope that her child can become what is identified in ableist literature as species-typical and therefore fully human. The mother should never give up hope – even if unsuccessful, she keeps fighting. Work is required and with this work the true child can be reclaimed. Furthermore, in addition to buying into the idea of hope, the mother also buys in an economic sense. Her object of desire is attainable if she commits her time and her wallet; essentially the promise that the mother can purchase her child into being.

Another way the object is made possible is McCarthy's claims of success, claims of success by other mothers and how this success was reported in mainstream media. As such, ableist discourses of autism and motherhood extended beyond those who have an autistic child. All mothers must continue to be aware of, and manage appropriately, the risks of autism.

3) What about this attachment is cruel and what are some of the discursive and subjectification effects produced by the representation of autism and mothers of autistic children?

An important discursive effect identified was the limits imposed on the way both autistic children and their mothers could be thought of. By making autism undesired and unwanted, it makes the child undesired and unwanted – representation that is cruel, confines and limits expectations of children and adults to ableist understandings of what it means to be human. Furthermore, that all mothers whose children are diagnosed as autistic are represented as being devastated constitutes assumptions and expectations embedded within the dominant motherhood discourse. The ‘right’ to have a non-autistic child – the child a mother ‘deserves’ – was tied up amongst the assumed duties mothers were required to perform. McCarthy's narrative describes and prescribes the work and responsibility of the mother. In many ways, McCarthy legitimises the condition of autism as being something the mother of a lower work ethic has relegated herself to.

With any form of childhood development framed as evidence of recovery, any typical behaviour is presented as a continuing form of attachment that thereby commits the mother to intense practices cruel to both her and her child. ‘Until’ she recovers her true child, the Train A mother can never accept the child she has. The promise of her true child cruelly rejects the autistic child. This loving mother may fight for her trapped child but ultimately she does not, and cannot, accept the child in front of her.

Finally, the notion that autism is something that happens to the child suggests all mothers need to be wary of the spectre of autism. It also suggests that we all view autism through an ableist lens of dysfunction and the autistic individual as a diminished human.

Limitations and future research

Some limitations and areas that warrant further exploration include that this study did not examine the impact or lived effects of the representations and invitations proffered by Generation Rescue and McCarthy. Further examination of sources that co-produce assumptions of motherhood and autism is warranted and necessary. Given that Generation Rescue is now defunct, it provides a moment-in-time snapshot of how autism and motherhood were viewed. However, more studies exploring how newer forms of online interaction and dialogue have developed over the past decade, and the implications of this for mothers of autistic children, may provide further contemporary insight into the fluidity of how mothers and parents construct and interpret autism. Finally, the concept of grift and that individuals and websites are profiting from promising false hope – quintessential cruel optimism – needs further examination. Vulnerable groups make vulnerable targets and consideration of the morally questionable methods and tactics employed by such groups and individuals would be timely.