Parents of autistic children have played a significant role in autism science and public policy; they have not only created advocacy organizations but have also become credentialed experts and collaborators in the development of research and policy (Silverman, 2012; Waltz, 2013). Today, many parents go online to exchange information, identify and evaluate treatments, learn how to navigate social services, and connect with larger communities for support and activism (Avery, 1999; Hammond, 2010). Some become producers of information through narrating their experiences in blogs, Tweets, or posts on Facebook or Instagram.
In this post, I explain why I study mothers of autistic children and the narratives they tell online in journal-style blogs. In a previous post, I described two competing discourses of autism that are prominent in traditional media coverage and in online spaces. Here, I make the case for why blogs by mothers of autistic children are one important type of text and social location for understanding how these discourses of autism show up in personal and public narratives. The big picture: I want to know how narratives by mothers of autistic children make sense of competing discourses of autism, how their orientations to these discourses can change over time, and how the structure of blogs and blogger practices shape these narratives.
Parents as Stakeholders
Historically, parents have been key players in autism science and policy. Silverman (2012) documented the prominence of parents as investigators, therapists, fundraisers, and advocates who have shaped autism science. Parent organizations formed in the US and UK in the 1950s; in a time when leading scientific experts blamed distant “refrigerator mothers” for causing autism, parent groups were a place to resist the medical establishment and find support (Waltz, 2013). These early groups were also influential in establishing schools, day centers, and residential communities. Widely read parent memoirs published in the 1960s sparked parent advocacy groups that “eventually changed the face of autism research and provision” (Waltz, 2013, p. 111). Likewise, parents have been pivotal in obtaining funding for biomedical research (Rapp, 2011).
Parents’ involvement in policy and science stems not only from concern for their children; it can also be a way for parents to reconstruct their own identity and biography (Altiere & Kluge, 2009; Waltz, 2013). For parents who are not themselves autistic and whose understanding of autism comes from the dominant autism-as-tragedy narrative, an autism diagnosis is often experienced as a disruption of who they are as parents and how their life will unfold. Mothers may give up or reduce paid employment to focus on caregiving (Baker & Drapela, 2010) and both mothers and fathers report that their social networks are reconfigured (Altiere & Kluge, 2009). Although autism is no longer thought to be caused by indifferent parenting, the stigma of having a disabled child persists (Silverman, 2012). Parents report reactions from others that include avoidance, hostile staring, and rude comments (Gray, 2002) and find themselves lacking support just when they need it most (Boyd, 2002). Many experience a child’s diagnosis as “a life-altering event” and react with despair, sadness, denial, confusion, guilt, frustration, and anger (Altiere & Kluge, 2009). Because neurotypical (NT) parents have usually been socialized to the dominant view of autism as “abnormal” and “flawed,” they must reconcile this with the value and respect they desire for their child (Avery, 1999; Avdi, Griffin, & Brough, 2000; Douglas, 2014).
Even within a social disability model that sees strengths associated with autism, there is acknowledgement that many parents must come to grips with a change in their expectations. Autistic activist Jim Sinclair (1993) described the biographical disruption NT parents experience and charted one possible narrative reconstruction: “Granted, autism isn’t what most parents expect or look forward to when they anticipate the arrival of a child…. Much of the grieving parents do is over the non-occurrence of the expected relationship with an expected normal child. This grief is very real, and it needs to be expected and worked through so people can get on with their lives…Grieve if you must, for your own lost dreams. But don’t mourn for us. We are alive. We are real. And we’re here waiting for you. The adventure of a lifetime is ahead of you.” Parents must “come to locate, interpret, and often to advocate for the personhood of one they would previously have known only as ‘the other’” (Landsman, 2003, p. 1948).
Parents as Storytellers
Narrative is a powerful means of reconstructing parent identities and challenging dominant discourses that devalue autistic children (Ewick & Silbey, 1995; Frank, 1994). Williams (1984, p. 197) defined narrative reconstruction as “an attempt to reconstitute and repair ruptures between body, self, and world by linking up and interpreting different aspects of biography in order to realign present and past and self with society.” Through narrative, individuals make sense of experience and make it available to others (Frank, 1995). Narratives about disability provide a basis for identity and action, help form or strengthen collective identities, and provide a counter-plot to dominant cultural understandings of disability (Malhotra & Rowe, 2015). Two studies have examined how parent narratives accomplished biographical reconstruction and how those reconstructions were linked to broader discourses of autism.
Gray (2001) interviewed 23 mothers and nine fathers of autistic children to find how they asserted their moral value and made sense of losing taken-for-granted assumptions. He recruited interviewees from an autism treatment center, where he also interviewed staff and observed. He described three types of narrative reconstruction. (1) Accommodation narratives allied with the values and treatments of the center, which gave a biological explanation for cause that exonerated parents from responsibility for their child’s autism. Autism was seen as amenable to improvement through therapy, but it could not be eradicated; consequently, parents were expected to grieve for a loss comparable to death and to reconcile themselves to an uncertain future. Nonetheless, parents were obligated to comply with expert treatments and to pursue as “normal” a family life as possible. Most parents adopted this narrative but some found it problematic. (2) Narratives of resistance countered the dependent role implied by accommodation. They emphasized a child’s strengths and resisted the expectation that parents should grieve and surrender to the center for information and treatment. Instead, parents educated themselves, allied with other parents, and engaged in political advocacy. (3) Narratives of transcendence accepted a biological explanation of cause, prognosis, and treatment but contested the idea that their family should be normal. They felt stressed and demanded explanation for their suffering. A religious faith gave meaning and a church community that provided acceptance. Gray observed that each of these narratives drew upon a culturally sanctioned master narrative of science, politics, or faith, and in so doing, allied the teller with a community (the treatment center, advocacy groups, or church).
Birmingham (2010) examined how two mothers of autistic children presented themselves as “good” mothers of “good” children. Both felt their experiences departed from the expected biography of motherhood but each utilized recognizable cultural forms (the genres of romance and irony) to structure their counter-narrative. One mother’s story resembled the archetypal romance in which she overcame adversity and fought evil, whereas the other mother was an ironic protagonist who attempted to keep her balance while grappling with absurd institutions. These narrative structures gave mothers a sense of “meaning, order, and direction in a life lived outside the cultural narrative” (Birmingham, 2010, p. 230). Their stories contrast with the mythic hero frame that dominates published parent memoirs (Sousa, 2011).
Research on blogs by parents of autistic children typically treat them as data for understanding parent experience, including discontents with and strategies for responding to institutions (Swanke, Zeman, & Doktor, 2009); challenges and successes related to school (Zeman, Swanke, & Doktor, 2011); strategies for coping with receiving a diagnosis (Fleischmann, 2004) and ways of obtaining support and community (Burgess, 2011; Thompson-Hayes, 2011). Alternatively, I propose to read blogs as narratives that link a blogger’s personal experience to broader discourses about motherhood and about autism. Whereas previous research has focused on parent blogs as a source of information about the difficulties parents face, I wish to ask how mothers’ stories intersect with broader discourses, including not only narratives of difficulty, stress, and adaptation, but also other, counter-narratives of motherhood and autism. Rather than reading blogs as a transparent window on experience, I wish to examine them as personal stories that are also epistemic, communal, and political. Studying them is an opportunity to understand these interconnections: How are bloggers using (and resisting) story elements from the broader culture to narrate their own experience? How do online connections and interactions shape stories? How does the technology of blogging shape the kinds of stories told? What are the larger political ramifications of representing motherhood or autism in these ways?
When I have presented my research on blogs by mothers of autistic children, I nearly always get a question from the audience: what about fathers? I must admit, I bristle a little whenever this comes up, because I hear in the question an incredulity that one would dare study mothers and not give equal time to fathers. I doubt the questioners intend this but I feel pressured to substitute “parent” in a way that ignores mothers’ work or the difference in experience that comes from the gendered expectations we have of “parents”.
Mothers still assume a disproportionate part of the day-to-day work of raising an autistic child. Mothers are more likely than fathers to give up or reduce paid employment in order to care for their autistic child (Baker & Drapela, 2010; Boyd, 2002; Gray, 2003). Sawyer and colleagues (2010) reported that mothers of autistic children (ages 6-17 years) spent an average of six hours each day on child care, a number that exceeded averages in previous studies of mothers of typically developing children, including pre-school children. Compared to mothers of NT children, mothers of autistic children report more stress and poorer mental health (Boyd, 2002), greater caregiving demands, and more concerns about their child’s achievement, self-esteem, stress, coping, learning difficulties, and being bullied (Lee et al., 2008).
Mothering an autistic child differs from what mothers expected, what they may have gone through with NT siblings, and what they witness their peers experiencing. Their mothering involves learning about and providing the accommodations an autistic child needs to be able to participate in playdates or parties, attending school, competing on athletic teams, and taking part in family gatherings (Lee et al. 2009). Mothers also learn to do symbolic work, such as making sense of “events that appear random and disordered to outsiders” (Birmingham 2010, 228).
Historically, mothers have been blamed for their children’s autism. Through the 1940s, 50s, and 60s, “refrigerator mothers” were blamed for causing their child’s autism through inadequate mothering, insufficient warmth and affection, and maternal ambivalence (Douglas, 2014; McDonnell, 1998). Although this theory has been thoroughly discredited, mothers still experience blame for children’s atypical behaviors and neurology. Douglas argues that the present day celebration of the “warrior mom,” who seeks a cure for autism at all costs, sets mothers up for blame if they do not exhaust all treatment possibilities or if their child does not respond to treatment. (In a future post, I’ll discuss in more detail how I believe the “warrior mom” persona comes about when dominant discourses of autism intersect with dominant discourses of motherhood.)
So in answer to the question “what about fathers?”: Yes, someone should study them, too, but I study mothers because there are distinctively gendered aspects of parenting an autistic child (and of blogging about it—see my previous post on the disparagement heaped on “mommy blogs” and consider whether you’ve heard the term “daddy blog,” much less heard it uttered with a sneer).
The question “Why mothers?” can also reflect frustration with the attention mothers of autistic children already receive. Much of the research on mothering autistic children focuses on how hard it is (see above, for example, on work, stress, stigma, worry). Likewise, parent suffering is a theme in news coverage (Huws & Jones, 2011) and in some parents’ own self-presentations. The dominant discourses of autism suggest that mothering an autistic child is worse than other experiences of mothering, without its own rewards, and meriting sympathy. Autism advocates have pointed out how attention to stories of mothers’ “suffering” can devalue autistic children and even excuse mothers who abuse or murder their children (see, for example, Des Roches Rosa, 2017). In focusing on mothers, we may fail to acknowledge the challenges and experiences of autistic children and adults, further amplifying a parent perspective that receives more legitimacy and airtime than that of autistics advocating for themselves.
Hughes (2015) has documented rifts online between autistic advocates and NT parents who tweet or blog about their experiences raising disabled children. NT parents who seek treatments or wonder about causes have been criticized for trying to fix or prevent autism instead of accepting neurodiversity. Although less common, NT parents’ vivid descriptions of autistic children engaging in self-harm or meltdowns have been criticized for violating the child’s privacy and contributing to negative stereotypes. Debates have also been waged about the centrality of NT parent voices in discourse about autism and whether they or adult autistics should speak for and about the interests of autistic children. “Most parents’ everyday approach to autism—working toward recovery—diverges so fundamentally from the approach endorsed by self-advocates—working toward acceptance and support—that fighting and talking past one another are much more common than dialogue between these groups” (Hughes, ch. 6, p. 4). The divide has played out in the Twitter- and blog-o-spheres, where low barriers to entry enable both autistic advocates and NT parents to self-publish their stories and where the capacity for interactivity has produced lively, and sometimes hostile, threads of comments to one another’s work.
One facet of my research is to examine how some bloggers come to terms with the challenge of describing their own experiences without stigmatizing, devaluing, or talking over autistics. The blogs I study include authors who are mindful of these issues and who are finding ways to write their stories, respect their children, and ally with autism acceptance. The blogs also include mothers who are themselves autistic, challenging the dichotomy of parents versus adult autistics. I believe that close attention to discourses of motherhood and autism can show the possibilities for counter-narratives and voices to be heard.
Mothers have a distinctive stake and story where autism is concerned and that’s why I study them. Mothers’ experiences (of mothering and of blogging) are interesting in their own right AND as a particular social location in which to better understand larger issues about the personal and political power of blogging.
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 Neurotypical (NT) is shorthand for those individuals whose neurology is typical. I use the term not only to characterize parents who are not autistic (for whom the term “allistic” or non-autistic might be more precise) but also to mark the contrast between advocates who come from a minority group, and parents who are members of the dominant group in society vis a vis neurology. The designation “NT” also acknowledges that there are individuals who are both parents and autistic.