Fletcher-Randle - final Correspondence Address: Jessy Erin Fletcher-Randle; Email: erinfletcherrandle@cmail.carleton.ca ISSN: 1911-4788 Volume 16, Issue 2, 389-406, 2022 Where are all the Autistic Parents? A Thematic Analysis of Autistic Parenting Discourse within the Narrative of Parenting and Autism in Online Media JESSY ERIN FLETCHER-RANDLE1 ABSTRACT Although content related to parenting Autistic children is common in online media, little attention is paid to the experiences of Autistic parents. There is a growing trend of parents receiving autism diagnoses after their children are diagnosed, yet a basic Google search on “parents” and “autism” reveals myriad data on the experiences of parents of Autistic children and little on experiences of Autistic parents. A systematic online search, augmented with a “crowd-sourcing” request to online parent support groups, identified only 15 articles and blogs that discuss Autistic parenting in advocacy, lifestyle, and parenting websites. This article explores the scope and content of Autistic parenting discourse in these online media to consider how the experiences of Autistic parents are conceptualized and situated within broader narratives of neurodiversity, autism and parenting. Media discourse focused on women who had received their autism diagnosis in adulthood, their experiences navigating their diagnoses, minimizing parenting challenges, and pushing back against autism stereotypes, with the majority of content intended for Allistic audiences. Recent increased recognition of autism in women has coincided with a new interest in Autistic parenthood, raising questions about gendered assumptions and disabled mothering. The media narrative includes “defying stereotypes” and “proving” autism is compatible with parenthood, echoing mainstream beliefs. Social justice issues reinscribed in the narrative illustrate how centring the voices of Autistic parents can reconceptualize public perception of autism and bridge the disconnect between parenting Autistic children, and Autistic parenting of children. 1 I am a feminist, Autistic individual with an interest in policy, social justice and disability rights. I began university studies online at age 23 without a high-school diploma or any academic support, and I still struggle to find my place in mainstream academia 10 years later. I was diagnosed with autism at age 32 after years of misdiagnoses and misunderstandings. I hope to make a difference in employment accessibility policy one day through my work as a public servant. Jessy Erin Fletcher-Randle Studies in Social Justice, Volume 16, Issue 2, 389-406, 2022 390 KEYWORDS adulthood autism; autistic parents; thematic media analysis; neurodiverse parenting; #ActuallyAutistic More people are being recognized/diagnosed as Autistic than ever before.2 This fact has been attributed to a widening of autism diagnostic criteria, a possible increase in actual prevalence (APA, 2013; Bargiela et al., 2016; Lai et al., 2015) and more adulthood recognition/diagnosis of people (especially women) who went undiagnosed in childhood. Many women are recognizing their own autistic traits upon diagnosis of their child (APA, 2013; Pohl et al., 2020) and coupled with the rise in autism advocacy and online social groups (Davidson & Orsini, 2013), some Autistic parents are sharing their parenting experiences, strengths, and challenges online. But how are the experiences of Autistic parents being presented and discussed in mainstream online media, and what does this mean for representation and social justice for Autistic parents? Among Autistic parent voices are people in the public eye. Autistic advocate and writer Cynthia Kim has published several books and maintains the website Musings of an Aspie (Kim, n.d.). Chris Fischer, spouse to comedian Amy Schumer, received his diagnosis and discussed his upcoming fatherhood in a documentary episode on his wife’s pregnancy (Hammer & Cunningham, 2020). Lana Grant, an Autistic specialist advisor, is the author of a biographic novel and pregnancy guide, From Here to Maternity: Pregnancy and Motherhood on the Autism Spectrum (2015). However, until recently, little research or media included discussion of Autistic parenthood (Pohl et al., 2020). This absence of representation in the online worlds of parenting, neurodiversity, and autism has social justice implications for Autistic parents. When I was a newly diagnosed Autistic parent, the people around me made me feel that autism and parenting were incompatible. As a graduate social work student with a passion for stories and writing, I was keen to explore media sources to discover what stories mainstream media tell about Autistic parenting, who is doing the telling, and with what potential consequences for Autistic parents. Deploying a thematic content analysis, I identified and explored parenting and lifestyle sources published in mainstream news, autism advocacy, and parenting websites to better understand how online media texts articulate the stories and experiences of Autistic parenting. My findings indicate that Autistic parents are not well represented, and narratives are skewed toward late recognized/diagnosed mothers seeking to “prove” autism and parenting 2 “Autistic” is capitalized and used here to reflect critical disability discourse and to indicate community identity. Throughout the article, I refer jointly to Autistic recognition/diagnosis to de- emphasize professional diagnosis and medicalization of neurodiversity and Autistic people. Where are all the Autistic Parents? Studies in Social Justice, Volume 16, Issue 2, 389-406, 2022 391 are compatible. Refuting autism stereotypes was central to constructing the narrative of Autistic parenting in the media sources. Further, medical solutions to parenting needs and challenges tended to be emphasized rather than structural accommodation approaches. As Autistic parenting is a relatively new discussion in an emerging field of adulthood autism research and literature, I argue that hearing from additional and diverse Autistic parents is crucial to understanding how Autistic parents are situated within the discourse of parenting, neurodiversity and disability. Centring discussion on Autistic parents’ voices will allow for a more fulsome, intersectional account of Autistic parenting to develop and grow. Understanding Autism Autism is a lifelong experience that is partly genetic and affects roughly one to two percent of the population (APA, 2013; Pohl et al., 2020). It is characterized by neurological differences in social and cognitive style and sensory functioning (ASAN, 2021a; Pearson & Rose, 2020; Walker, 2021). Traditionally, autism was diagnosed in childhood by health professionals guided by the Diagnostic and Statistical Manual of Mental Disorders (DSM) (APA, 2013). This is still the case for many people, but increasingly people self-diagnose later in life. In 2013, the DSM fifth edition (DSM-5) widened the criteria and reclassified the previously separate conditions of Autistic Disorder (classic autism), Asperger’s Disorder, and Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS) into one category. According to the DSM-5 (APA, 2013), the female:male sex-ratio of autism is 1:4, although several research studies claim the ratio is closer to 1:3 or even 1:2 in practice (Bargiela et al., 2016; Loomes et al., 2017; Pohl et al., 2020).3 It is known that girls and women are diagnosed at a much lower rate, with a sex-ratio of 1:5 and a historical ratio of 1:7 (Whiteley et al., 2010). Females are also diagnosed later than their male counterparts (Bargiela et al., 2016; Lai et al., 2015; Pohl et al., 2020). This gender disparity in autism diagnosis, coupled with increased public knowledge as more children are diagnosed under the DSM-5, has led to more women being recognized/diagnosed later in life. Trans and non-binary members of the Autistic community are not included in these analyses but are becoming more visible in research and advocacy (Pyne, 2021).4 3 The cisnormative nature of the studies cited mean that they do not take into account the complexity and separate nature of gender and sex. For more information on sex, gender identity and autism research, please see Strang et al. (2020). 4 For more information, see the Autistic Women & Nonbinary Network resources at https://awnnetwork.org/ Jessy Erin Fletcher-Randle Studies in Social Justice, Volume 16, Issue 2, 389-406, 2022 392 Autism tends to be conceptualized as either a medical condition or socially constructed disability. The medical model views autism as a developmental disorder or condition. It focuses on treating individuals for “deficits,” and preventing, fixing, or curing autism through clinical and biomedical intervention (Gruson-Wood, 2016; Pellicano et al., 2014). The medical model situates medical professionals as experts on the needs of Autistic people and positions neurotypicality as the lens through which the Autistic experience is conceptualized and studied. This model does little to forward social justice and social change for Autistic people, as it locates deficits in the individual and targets all interventions and modifications at an individual level. The social model of disability conceptualizes disability as an incompatibility between the environment and individual’s needs, situating people with disabilities as the experts on their own experiences (Barnes, 2019; Oliver, 1996; Shakespeare, 2010). Through the social model lens, an Autistic individual’s experience of disability arises from their environment’s failure to include and support the different ways people communicate, experience, and interact in society. This model posits that accommodating neurological differences will reduce the experience of disability for Autistic people. Although the social model is not a complete theory of disability and should be used in conjunction with models which incorporate impairment, it is helpful in its reconceptualization of disability as the outcome of social exclusion (Oliver, 2013; Shakespeare, 2006). The social model is a bridge between the medical model and the more radical position taken by the neurodiversity movement. This movement views differences in neurocognitive functioning as a natural form of human diversity and seeks full societal inclusion and social justice for all neurodivergent people, including Autistic people (ASAN, 2021b; Ballou, 2018; Walker, 2021). As one action of this movement, the Autistic online community and self- advocates have been shifting the focus of autism expertise by centring Autistic people as experts of their own experiences and decentring parents of Autistic children, whose advocacy dominates in current debate (Altay, 2021; Eartharcher, 2017; Osorio, 2020). As one way to centre the voices of Autistic people, the hashtag #ActuallyAutistic is used in many social media platforms to differentiate content and posts written by Autistic people about autism or Autistic people, from content and posts that non-Autistic people write (Altay, 2021; Eartharcher, 2017; Osorio, 2020). This hashtag is an effort to advance social justice for Autistic adults and youth through voice. In this discussion, I take inspiration and perspective from #ActuallyAutistic. Given the emergence of Autistic parents as a relatively recent topic for media and research, Autistic parents must have increased presence and credibility in conversations about autism and opportunities to share their expertise based on lived experience (Osorio, 2020). It is crucial that their varying perspectives are presented on mainstream parenting, news, and autism advocacy websites to build representation and understanding for Where are all the Autistic Parents? Studies in Social Justice, Volume 16, Issue 2, 389-406, 2022 393 and about Autistic parents; debunk stereotypes; explore the breadth of parenting experiences across gender, race, class, sexuality and neurodiversity; and reach more segments of the Autistic population, including newly diagnosed children and the parents raising them. Autism and Parenting Much like Orsini’s (2012) distinction between the autism movement and the Autistic movement, I use the term autism parents to refer to Allistic adults who are parenting an Autistic child, and the term Autistic parents to refer to Autistic adults who are parents.5 While autism parent refers strictly to Allistic parent/Autistic child relationships, an Autistic parent may have an Autistic or an Allistic child. Given that there is considerable diversity within the Autistic community, including race, gender, class, sexuality, neurodiversity, and more, and no two Autistic people have the same experiences, there may still be significant diversity within and among these relationships. Further, children are often raised by more than one parent, and parents may raise more than one child. Research literature about parents of Autistic children reveals that reported stress levels are higher for parents of Autistic children than parents of children with other disabilities, such as Intellectual Disability and Cerebral Palsy (Farmer & Reupert, 2013; Ku et al., 2019; Pozo et al., 2014). Many quality of life studies have attributed this high-stress rate to the “severity” of the child’s impairments in verbal communication, social communication, and behaviours, as well as the parent’s adaptation of a new set of skills in parenting an Autistic child (Hall et al., 2016; Poslawsky et al., 2014; Pozo et al., 2014).6 A program evaluation study found that parents who participated in an education class to better understand autism, their child’s development, and the neurological basis for autism, subsequently reported lower stress levels and higher confidence in parenting (Farmer & Reupert, 2013). Therefore, a lack of accurate autism knowledge and understanding may underpin some of the stress faced by parents of Autisitc children, especially those parents without personal knowledge or experience with autism, and their needs for resources and information should be met wherever possible. Autistic parents may experience similar challenges as autism parents in navigating situational challenges and neurodiversity within the family, but there is not much research exploring their experiences. While one study 5 Allistic is a more inclusive term used by the Autistic community to refer specifically to those who are not Autistic but may not be neurotypical (Autism Canada, 2020). This article will employ the term Allistic to denote people who are not Autistic. This article capitalizes Allistic as it is referring to a group of people. 6 This language of “impairment” is consistent with the cited quality of life studies and is retained for accuracy in data interpretation. Jessy Erin Fletcher-Randle Studies in Social Justice, Volume 16, Issue 2, 389-406, 2022 394 explored the quality of life of Autistic parents, focusing exclusively on the experiences of mothers and women (Pohl et al., 2020), others have focused on the needs of Autistic women during pregnancy and childbirth (Rogers et al., 2017; Suplee et al., 2014). There is limited research available that focuses on Autistic parents and their parenting. In addition to the scientific literature on the quality of life of parents of Autistic children, there are several qualitative analysis studies of online stories of the experiences of parents of Autisitc children (Fleischmann, 2005; Reinke & Solheim, 2015; Zeman et al., 2011). These studies reveal varying purposes and research goals, from understanding parents’ journeys and needs, to forming a knowledge base for developing and optimizing supports for these parents. No studies analyzing the online stories of Autistic parents’ experiences were found, and this qualitative thematic analysis study helps to fill this gap. Methods This article reports on a small independent research project involving a two- tier online search for mainstream media content on Autistic parenting and a thematic content analysis of selected works to answer the research question: How are the experiences of Autistic parents conceptualized in mainstream online media, and what does this mean for representation and social justice for Autistic parents? The research began with a keyword search on Google and Google Scholar, and included the following search terms: “(Autis* or Asperger or Aspie or Neurodivers*) AND (mother(ing) or father(ing) or parent(ing)).”7 Articles and blog entries that featured an Autistic parent were included, and those that did not were excluded. Simultaneously, a request was posted on four Facebook social support groups for Autistic adults, asking members to help identify any English language, text-based media on Autistic parenting they have noted. I was a long-standing member of these groups. This callout yielded many suggestions of articles, websites, blogs, studies and community figures who have spoken about Autistic parenting and helped broaden the online search. In effect, this method offered a “crowd-sourced” approach to enhance the breadth and depth of basic online data collection. Media content was initially reviewed for inclusion based on the following criteria: • the article or blog entry must contain actual accounts of Autistic parents; 7 Although the DSM-5 no longer has the distinct diagnosis of Asperger’s Syndrome and many within the Autistic communities reject this label on moral grounds, many adults still carry the diagnosis and use this term. Where are all the Autistic Parents? Studies in Social Justice, Volume 16, Issue 2, 389-406, 2022 395 • the article or blog entry, if written by the child of an Autistic parent, must include the parent’s self-diagnosis or formal diagnosis status,8 and not be a speculative account or attempt to diagnose based solely on characteristic autism traits; and • the article or blog entry must mention elements or aspects of parenting and of autism, whether negative, positive, or neutral; any depth of account qualified. The search was conducted in October and November 2020 and yielded 32 articles and blogs. Seventeen of these data sources did not fit the criteria. After this initial review, the 15 remaining selected articles and blog entries were read and analyzed, with relevant information recorded in a protocol template designed to capture and compare the dominant subtopics, themes, and framework in their narratives of Autistic parenting. All of the data sources used in this analysis discussed experiences of a self- or formal-diagnosed Autistic parent through written accounts in either blog or article form. These works were a compilation of online news articles (5), parenting (3) and health (1) magazine interest stories, autism advocacy articles (5), and blog entries on disability websites (1). Most of the selected content were articles written for websites or newspapers, and only two could be classified as blog entries. Ten of the data sources were presumed to be written for an Allistic, general audience due to their location on mainstream online websites. The remaining five data sources, found on autism advocacy websites, were presumed to be for both Autistic audiences and Allistic general audiences, as the content on these websites are typically written by and for the Autistic community and the general population. In total, seven of the data sources were written by Allistic journalists (discussing between one and four autistic parent families). Eight were written by Autistic parents, each discussing between one and 13 Autistic families. The writers of these data sources can be further broken down as follows: 11 journalists or writers (73%), three of whom are also Autistic parents, and four Autistic parents who write based on their own experience (27%). Eleven of the 15 data sources featured women diagnosed with autism after becoming parents. The remainder of the data sources featured men (2) and men and women (2), many of whom recognized themselves as Autistic before becoming parents. In sum, this search yielded a small selection of online data sources, showing that the topic is somewhat “fringe” in online discussions surrounding interest in neurodiversity and parenting sites. Journalists wrote 8 Adults with self-diagnosed autism or Asperger’s Syndrome were included due to inequities in the formal diagnosis process for many women, BIPOC and LGBTQ persons who may go under- recognized in healthcare. Jessy Erin Fletcher-Randle Studies in Social Justice, Volume 16, Issue 2, 389-406, 2022 396 most of these accounts, while Autistic parents, including journalists, were represented but not dominant. The media content for Autistic parenting is relatively new and limited. Over half the data sources included in this analysis were written within the past four years, with the oldest dated article from 2014. Most Autistic adults sharing their experiences were late-diagnosed women, with only two articles or blog entries incorporating men and childhood-diagnosed adults. Additionally, only Autistic parents who could speak with a journalist or write about their experiences in a more traditional media format were represented, as a result of the nature of the project design, media representation, and availability of online content. This limited the sample distribution towards the particular experiences of late-recognized Autistic women with Autistic children and may not reflect the majority of Autistic parents, especially as there has been little research into the demographics and statistics of Autistic parents (Pohl et al., 2020). Online Discourse of Autistic Parenting Experiences: Advocacy, Stereotypes, Challenges The online discourse on Autistic parenting reveals a robust and cohesive advocacy stance that aims to refute beliefs that Autistic people should not be parents and demonstrate that autism and parenting are not mutually exclusive: I think more needs to be done to show how autistic parents actually parent. Not just anecdotal stories, but actually do some case studies on families. That just hasn’t happened. Since the majority of actual literature out there says we’re innately negligent, that is what services providers are going to perpetuate. (Pacton, 2016) Autism is much misunderstood. Stereotypes abound, and many would assume that autism and motherhood don’t make comfortable bedfellows. I don’t believe this to be true. (James, 2019) Disabled parents have fought hard to be accepted as parents (Pinto, 2010), and this review shows that Autistic parents and their advocates have joined this fight. Many of the parents represented in the data sources wanted to provide information and hope for Autistic adults who are just beginning parenthood and cannot find the resources and information they need online. Other parents indicated that their motivation to share their experiences of ableist discrimination in accessing child/parent services was to educate professionals about Autistic parents’ needs and prevent others from experiencing the harm they and their children had sustained. Most stories were from unrecognized/undiagnosed Autistic mothers who, upon having children, were abruptly disabled by the sensory experience, social tasks, and Where are all the Autistic Parents? Studies in Social Justice, Volume 16, Issue 2, 389-406, 2022 397 gendered burden of parenting. This experience led to an autism diagnosis and a growing self-understanding of their needs and strengths: I am emotionally stronger, smarter, more flexible, less obsessive, less self- absorbed, more aware of my surroundings and more patient than at any time prior to the birth of my son. (Farmer, 2020) I also know that my autism helps me be a good mother: autistic people get obsessions, and my obsession is making sure I’m doing everything I can to give my children everything they need, to love them, fight for them, and get them to adulthood healthy and happy. (Hill, 2017) These accounts were often paired with lengthy descriptions of parents feeling left out or unsupported in their parenting by mainstream parenting support groups, in autism-related services, and online parenting resources, which framed successes as overcoming obstacles (Deweert, 2017; Hill, 2016; Hill, 2017; Justine, 2020; Kim, 2014a; Malia, 2020; Pacton, 2016). For example, many data sources described Autistic parents feeling judged or misunderstood by professionals, attributing these problems to both ableism and social communication (Deweert, 2017; Hill 2016, 2017; James, 2019; Kim, 2014a, 2014b): People believing me incompetent or emotionally lacking is dangerous in the sense that I could be assumed incapable of being a parent. And so, it feels very scary sometimes being an autistic parent, wondering whether one day my parenting will be seriously questioned due to discrimination and misunderstanding. (Pacton, 2016) I understand that my autism makes me a difficult person to deal with: I don’t know when to back off when I know I’m right. I can’t look people in the eye, so I come over as being shifty. Autistic people get hyper-focused but they mistook my obsession as a sign I was unstable. (Hill, 2016) Many parents advocated for supports to help Autistic parents communicate effectively with their child’s school, social services, and health professionals to combat discrimination and eliminate communication barriers (Deweert, 2017; Dias, 2019; Hill, 2016; Kim, 2014a). This narrative advocates for structural change, usefully questioning whether the origin of these communication barriers lies with neurological differences or with a system that relies on Allistic expectations for social communication to form opinions on parent fitness. The Autistic parenting discourse emphasized the strengths Autistic parents bring. For example, while meeting a child’s emotional needs was typically described as a potential challenge, these data sources debunked the stereotype that Autistic people lack empathy or emotion (Deweert, 2017; James, 2019; Justine, 2020; O Donnell, 2019). They emphasized parents’ commitments to Jessy Erin Fletcher-Randle Studies in Social Justice, Volume 16, Issue 2, 389-406, 2022 398 self-awareness and the utility of logic-based responses over emotion-based responses in certain parenting situations: Looking back, my parenting differences were never more apparent than when my children were in their teens. I noticed just how logical, rather than emotional, my mothering was. While my friends would sob, rage and blame their children and themselves when things went wrong (such as children dropping out of college, drinking too much, experimenting with drugs or having pregnancy scares), my approach would be infinitely more pragmatic. If something went wrong, I would discuss it with my children, try to understand why they did it and help them get back on track. (James, 2019) The emotional work of parenting can also be a challenge for people with autism… Drew is acutely aware of being a parent with autism, and constantly monitors himself to make sure he provides what his daughter needs… The irony is that his awareness of having a condition that makes it difficult for him to express affection has transformed virtually his every action into an expression of love. (Deweert, 2017) If they’re doing something you don’t like, it’s because you have a preconceived idea of how children should be, behave or look. That’s illogical. If, on the other hand, they are doing something dangerous, then it’s much more effective to sit down and discuss it with them. (Hill, 2017) The overarching advocacy narrative was of Autistic parents achieving growth, adaptation, and parental satisfaction in spite of the lack of neurodiversity-friendly parenting resources.9 Further, this narrative pushed back on stereotypes that suggest Autistic adults cannot adapt to new roles and routines, empathize or respond to emotion. The discourse emphasized that acceptance and appreciation for neurological differences are crucial for raising children (Dias, 2019; Farmer, 2020; Hill, 2017; James, 2019; Justine, 2020; Parker, 2019; Rudy, 2020). It also reframed Autistic parents’ need for structure and routine as providing stability, and logic-based responses as supporting their child’s autonomy. The following quotes encapsulate this reconceptualization: I didn’t have that same self-consciousness as many of my neurotypical friends that their children were a reflection of themselves, so I allowed them to grow into their own people very early on in their lives. (James, 2019) It [Adulthood autism diagnosis] has also given me space to accept that I also have an obligation to meet my own needs so that I am better able to parent my kids. I 9 An example of a neurodiversity-friendly support or resource is one that strives to be inclusive, respectful of different learning styles, takes into account various sensory needs, and allows multiple communication methods. Where are all the Autistic Parents? Studies in Social Justice, Volume 16, Issue 2, 389-406, 2022 399 have learned to recognize when I am overwhelmed before I reach the burnout stage, and I have learned to take some time to recharge. (Rudy, 2020) Getting my own diagnosis has helped me liberate from the social pressures and enabled me to help my son become his own personal best. (Dias, 2019) Being autistic has meant my autistic children have grown up without the usual pressures and stresses that neurotypical parents can unknowingly subject their children to. My parents tried to force me to be ‘normal’ and to conform. They tried to force me to socialise, eat normally, behave normally. (Hill, 2017) While most data sources discussed the problems of ableism and discrimination in society, at the same time, some sources also reproduced ableism and other discriminatory stereotypes. These problematic mindsets were evident in Autistic parent story-telling that uncritically accepted the onus of change, even while finding it harmful to their well-being. This view suggests that ending discrimination requires professionals to behave with more acceptance, tolerance, skill and knowledge but does not advocate for structural and societal changes to accept and support neurodiversity within mainstream society. This line of argument was emphasized in several ways, including through data sources stressing the need for early diagnosis and intervention that valued reducing the appearance of autism traits over accomodating differences in social functioning and reducing unnecessary social tasks. Most data sources discussed the importance of autism diagnosis for parents. However, some emphasized that diagnoses should lead to swift and targetted interventions: “missing that critical intervention [of diagnosis and targeted treatment] may have lasting effects on women, including depression and anxiety caused by a persistent feeling of failure” (Dias, 2019). Suggested interventions for increasing Autistic parents’ social functioning ranged from communication skills training to occupational and behavioural therapy (Dias, 2019; Kim, 2014a). One journalist specifically asked about parents’ “autism- related therapies that help [them] better manage parenting” (Rudy, 2020), to which one parent replied that therapy is not “one-size-fits-all,” while the other parent replied that behavioural therapies (the most well-known “autism- related” therapies) were a negative experience for him. These data sources depict autism as a medical condition requiring treatment rather than a disability experienced due to an ableist world. In some data sources, this medicalized approach was inadvertently reinforced through narratives emphasizing Autistic parents’ sense of social obligation to mask challenges and appear adept at social tasks: The level of care an autistic girl needs to be able to socialise is vast. Because I’m autistic, I understand and will spend the necessary hours helping them [her daughters], before they go out socially, to work out everything that could possibly happen when they’re out and how they could react. We then work out a Jessy Erin Fletcher-Randle Studies in Social Justice, Volume 16, Issue 2, 389-406, 2022 400 contingency plan for if something happens that we have not predicted. (Hill, 2017) I am a constant bag of nerves, since being a mum requires me to try to do all those things [social tasks of parenting]. Not doing them, or asking my parents or husband to do those things, makes me feel like a failure, a ‘bad mum.’ Doing them causes me such stress that I feel utterly drained afterwards for a fairly long period of time, from hours to days. (Sandham, 2017) Another issue influencing this Autistic parenting discourse was its implicit assumptions about gender. Most data sources and research literature included in this article centred on women, making the word “parent” almost synonymous with “mother.” While men make up a higher proportion of the Autistic population (Bargiela et al., 2016; Lai et al., 2015; Loomes et al., 2017), women were selected as the exclusive subjects of the pioneer study into Autistic parenting experiences (Pohl et al., 2020). This gender bias could be because women remain the primary caregivers in many families, and that increased recognition/diagnoses of Autistic women bring societal attention to the idea that Autistic people are more than subjects of care, as noted in the broader women’s disability movement (Frederick, 2014; Macdonald, 2016; Track, 2014). Both feminist and disability scholars have long drawn attention to the unequal gendered distribution of parenting accountability (Frederick, 2014; Grue & Lærum, 2002; Malacrida, 2009; Romero, 2018; Track, 2014). Gender and ability can come into play for parents in the child welfare system, producing inequities for women with disabilities that neither disabled men nor non-disabled women face (Blumenthal, 2015; Track, 2014). As mothers, women with disabilities are under increased scrutiny in society, including healthcare, child welfare, and educational systems (Blumenthal, 2015; Braedley, 2010; Malacrida, 2009; Track, 2014). This judgment and scrutiny of disabled mothering may explain why late- recognized/diagnosed women appear to be favoured – even the ideal subject – in online discourse on Autistic parenting. Men tend to be recognized and receive autism diagnoses sooner than women (Bargiela et al., 2016; Lai et al., 2015; Pohl et al., 2020), and thus are more likely to be perceived as intentional actors in passing on their genes when becoming parents. However, men also experience less scrutiny and fewer societal expectations as parents due to mothers’ assignment as children’s primary caregivers. As the narrative of Autistic parenting tends to reflect the experiences of Autistic mothers who are diagnosed only when their children are assessed for autism and do not as yet reflect experiences of men and women aware of being Autistic before having children, further research into the gendered burden of parenting and its impact on Autistic mothers may be warranted to explore any potential bias against intentional Autistic parenting. This phenomenon may be best studied from a disability framework, situating Autistic mothering within the broader Where are all the Autistic Parents? Studies in Social Justice, Volume 16, Issue 2, 389-406, 2022 401 social movement of disabled mothering (Frederick, 2014; Grue & Lærum, 2002; Malacrida, 2009). A final issue emerging in the online discourse of Autistic parenting was the tendency to emphasize that Autistic parents were good for raising Autistic children due to the potential for understanding and support based on shared neurology, while neglecting to interview or discuss Autistic parents who are raising Allistic children (Dias, 2019; Hill, 2016; Malia, 2020; Pacton, 2016). One data source explicitly framed Autistic parent/Autistic child relationships as valuable examples to autism parents: This is really just the tip of the iceberg of the excellent conversations I had with these moms, but it highlights why we must keep including autistic parents in parenting conversations. Their insights are crucial for neurotypical parents (like myself) who are raising autistic kids, and their voices must be heard so we can continue to combat stigma and discrimination. (Pacton, 2016) This issue ignores and hides Autistic parenting of Allistic children and many other aspects related to neurodiversity within family life. Reframing Autistic Parenting for Social Justice Given the strong advocacy narrative in online discourse about Autistic parenting, coupled with its problematic ableist, individualist, and gendered assumptions, what social justice aims would address and reframe Autistic parenting narratives to more fully align with the wider realm of parenting, autism and neurodiversity discourse? First, and perhaps most obviously, increasing representation and centring of Autistic parents’ voices and experiences in online discussions of neurodiverse parenting can debunk discriminatory perspectives of autism and parenting. Drawing on lessons learned through campaigns such as #ActuallyAutistic, this approach could develop a wider societal appreciation for neurological differences and increase the representation and presence of Autistic parents in social media conversations about autism and parenting. This effort could build appreciation for neurodivergence and different ways of performing parenthood, situate Autistic parenting solidly within the realm of parenting discourse and reconceptualize what it means to parent and nurture a child with a different neurotype. Second, Autistic parents and autism advocates need to demand change to services for parents and children, including educational, health care, and social services. Drawing on the social model of disability more explicitly, Autistic parents and autism advocates must challenge assumptions about individual responsibilities to adapt to a discriminatory society. Third, Autistic parenting experiences and quality of life are underdeveloped and newly emerging fields in autism research and parenting Jessy Erin Fletcher-Randle Studies in Social Justice, Volume 16, Issue 2, 389-406, 2022 402 research. Much work is needed to fully understand Autistic parents’ experiences and develop a knowledge base for Autistic parents and those who support their families in the school, health, and family services systems. Researching and writing about vulnerable groups, especially parents with disabilities, can perpetuate harm if conducted without sensitivity to participants’ intersectionality (MacDonald, 2016; Romero, 2018). Critical disability and feminist research exploring disabled motherhood could inform future research of Autistic parenting and ensure all gender experiences are considered, including Autistic fatherhood. Conclusion This thematic analysis reveals that content on the experiences of Autistic parents is a sparse but developing area located on the fringes of the broader dialogue of neurodiverse parenting, as research and online media focus on the experiences of autism parents. However, late-diagnosed women are sharing their parenting journeys of self-discovery, building more representation of both Autistic adults and Autistic parents. Much of the resulting narrative focused on Autistic parents’ strengths and challenges and detailed how they successfully met their children’s needs despite a lack of autism-friendly parenting resources for new parents. Autistic parents’ concerns and priorities mostly revolved around discrediting harmful stereotypes of autism and appealing for more understanding of adulthood autism for themselves and the professionals working with their families in various capacities. This analysis identified reinscribed ableism in the narrative of many data sources reviewed, focusing mainly on three themes. First, there was a medical approach to autism by emphasizing treatment as the goal of adulthood diagnosis to the exclusion of social approaches that focus on environmental adjustments and supports. Second, the proliferation of the experience of late- diagnosed Autistic women in the narrative of Autistic parenting, despite men making up a higher proportion of the Autistic population, led me to question the implicit assumptions of gender and disability in Autistic parenting. I strongly recommend that future Autistic parenting research attend to intersectionality and that discourse surrounding Autistic mothering be situated within the broader social movement of disabled mothering, which already attends to the power dynamics and increased scrutiny of mothers in society. Third, limiting stories of Autistic parenting to those who shared neurology with their child isolated the narrative of neurodiverse parenting to Allistic parent/Autistic child relationships only. This analysis also revealed an appreciation for neurological differences in several articles, which effectively reframed Autistic parenting as a welcome variation in parenting and an equally valid way of being. This reconceptualization demonstrates that centring Autistic parents’ voices is Where are all the Autistic Parents? Studies in Social Justice, Volume 16, Issue 2, 389-406, 2022 403 essential in reframing Autistic parenting and enabling positive representation of Autistic parents in the dialogue of autism, parenting and neurodiversity. Throughout the article, I attempted to espouse the principles of both the social model of disability and #ActuallyAutistic by preserving and centring Autistic parents’ voices via excerpts. Although #ActuallyAutistic is still firmly a social media movement and tool, it has future potential to amplify Autistic parents’ voices and build representation and presence in discussions of parenting, autism, and neurodiversity in more traditional online media sources. This shift in the narrative can reconceptualize how Autistic parenting is discussed, reach broader audiences, and increase social justice for Autistic parents in the social realm of parenting. Acknowledgements Thank you to Angela Vrieze, Zoe Brow, Jodi van der Laan and Bonnie Schroeder for your helpful feedback on earlier versions of this article. Thank you to Dr. Susan Braedley for your expert advice, comments and support, which really helped get this article to the next level. Thank you to the editors and anonymous peer reviewers for your valuable input and to the members of my Facebook social support groups for Autistic adults for your enthusiasm and support of my online search. References Altay, A. (2021, June 28). Why autistic people are using #actuallyautistic on social media. Medium. https://medium.com/artfullyautistic/why-autistic-people-are-using-actualyautistic- on-social-media-f75fbb210bbc APA (American Psychiatric Association). (2013). Diagnostic and statistical manual of mental disorders: Fifth edition. https://doi.org/10.1176/appi.books.9780890425596 Autism Canada. (2020) What do the terms neurotypical, neurodivergent, neurodiversity, and allistic mean? Resources: Frequently asked questions. https://autismcanada.org/resources/faq/ ASAN (Autistic Self-Advocacy Network). (2021a). About Autism. About ASAN. https://autisticadvocacy.org/about-asan/about-autism/ ASAN (Autistic Self-Advocacy Network). (2021b). Neurodiversity and disability rights. What we believe. https://autisticadvocacy.org/about-asan/what-we-believe/ Ballou, E. P. (2018, February 6th). What the neurodiversity movement does—and doesn’t—offer. Thinking Person’s Guide to Autism. http://www.thinkingautismguide.com/2018/02/what- neurodiversity-movement-doesand.html Bargiela, S., Steward, R., & Mandy, W. (2016). The experiences of late-diagnosed women with autism spectrum conditions: An investigation of the female autism phenotype. Journal of Autism and Developmental Disorders, 46(10), 3281-3294. Barnes, C. (2019). Understanding the social model of disability: Past, present and future. In N. Watson & S. Vehmas (Eds.), Routledge handbook of disability studies (2nd ed.) (pp. 14- 31). Routledge. Jessy Erin Fletcher-Randle Studies in Social Justice, Volume 16, Issue 2, 389-406, 2022 404 Blumenthal, A. (2015). Child neglect I: Scope, consequences, and risk and protective factors. Canadian Child Welfare Research Portal. https://cwrp.ca/sites/default/files/publications/en/141E.pdf Braedley, S. (2006). Someone to watch over you: Gender, class, and social reproduction. In K. Bezanson & M. Luxton (eds) Social reproduction: Feminist political economy challenges neo-liberalism (pp. 215-230). McGill-Queen’s University Press Davidson, J., & Orsini, D. (2013). Worlds of autism: Across the spectrum of neurological difference. University of Minnesota Press. Deweert, S. (2017, May 18). The joys and challenges of being a parent with autism. The Atlantic. https://www.theatlantic.com/family/archive/2017/05/autism-parenting/526989/ Dias, I. (2019, June 11). ‘I understand exactly who he is’: Moms discover they share autism with their children. The Washington Post. https://www.washingtonpost.com/health/i-understand- exactly-who-he-is-moms-discover-they-share-autism-with-their- children/2019/06/07/a8c6d06a-5fc4-11e9-9ff2-abc984dc9eec_story.html Eartharcher, L. (2017, January 2). The #acutallyautistic hashtag is *only* for actually-autistic people. The Silent Wave. https://thesilentwaveblog.wordpress.com/2017/01/02/the- actuallyautistic-hashtag-is-only-for-actually-autistic-people/ Farmer, R., & Reupert, A. (2013). Understanding autism and understanding my child with autism: An evaluation of a group parent education program in rural Australia. The Australian Journal of Rural Health, 21(1), 20-27. Farmer, S. (2020). Aspie dad, spectrum son. The Asperger/Autism Network. https://www.aane.org/aspie-dad-spectrum-son/ Fleischmann, A. (2005). The hero’s story and autism: Grounded theory study of websites for parents of children with autism. Autism: The International Journal of Research and Practice, 9(3), 299-316. Frederick, A. (2014). Mothering while disabled. Contexts, 13(4), 30-35. Grant, L. (2015) From here to maternity, pregnancy and motherhood on the autism spectrum. Jessica Kingsley Publishers. Grue, L., & Lærum, K. T. (2002). “Doing motherhood”: Some experiences of mothers with physical disabilities. Disability & Society, 17(6), 671-683. Gruson-Wood, J. (2016). Autism, expert discourses, and subjectification: A critical examination of applied behavioural therapies. Studies in Social Justice, 10(1), 38-58. Hall, C. M., Culler, E. D., & Frank-Webb, A. (2016). Online dissemination of resources and services for parents of children with autism spectrum disorders (ASDS): A systematic review of evidence. Review Journal of Autism and Developmental Disorders, 3(4), 273- 285. Hammer, A., & Cunningham, R. (Directors). (July 9, 2020). Gestation (Season 1, Episode 2) [TV series episode]. In A. Schumer (Executive Producer), Expecting Amy. It’s So Easy Productions. Hill, A. (2016, December 26). Autism: ‘Hidden pool’ of undiagnosed mothers with condition emerging. The Guardian. https://www.theguardian.com/society/2016/dec/26/autism- hidden-pool-of-undiagnosed-mothers-with-condition-emerging Hill, A. (2017, April 15). Mothers with autism: ‘I mothered my children in a very differentway’. The Guardian. https://www.theguardian.com/lifeandstyle/2017/apr/15/women-autistic- mothers-undiagnosed-children James, L. (2019, February 1). Having autism made me a better mother. Today’s Parent. https://www.todaysparent.com/family/special-needs/having-autism-made-me-a-better- mother/# Justine, L. (2020, October 28). My neurodiverse household. Medium. https://medium.com/artfullyautistic/my-neurodiverse-household-62be05a3a68f Kim, C. (2014a, January 22). Motherhood: Autistic parenting. Autistic Women & Nonbinary Network (AWN). https://awnnetwork.org/motherhood-autistic-parenting/ Kim, C. (2014b, April 17). Autistic motherhood: Honoring our personal choices. Autistic Women & Nonbinary Network (AWN). https://awnnetwork.org/autistic-motherhood- honoring-our-personal-choices/ Where are all the Autistic Parents? Studies in Social Justice, Volume 16, Issue 2, 389-406, 2022 405 Kim, C. (n.d.) Musings of an aspie: One woman’s thoughts about life on the spectrum. Musings of an Aspie. https://musingsofanaspie.com Ku, S., Stinson, J. D., & MacDonald, M. (2019). Parental behavior comparisons between parents of children with autism spectrum disorder and parents of children without autism spectrum disorder: A meta-analysis. Journal of Child and Family Studies, 28(6), 1445-1460. Lai, M. C., Lombardo, M. V., Auyeung, B., Chakrabarti, B., & Baron-Cohen, S. (2015). Sex/gender differences and autism: Setting the scene for future research. Journal of the American Academy of Child and Adolescent Psychiatry, 54(1), 11-24. Loomes R., Hull, L., & Mandy W. P. L. (2017). What is the male-to-female ratio in autism spectrum disorder? A systematic review and meta-analysis. Journal of the American Academy of Child and Adolescent Psychiatry, 56(6), 466-474. MacDonald, J. (2016). Intersectionality and disability. In J. Robertson & G. Larson (Eds.), Disability and social change: A progressive Canadian approach (pp. 136-166). Fernwood Press. Malacrida, C. (2009). Performing motherhood in a disablist world: Dilemmas of motherhood, femininity and disability. International Journal of Qualitative Studies in Education, 22(1), 99-117. Malia, J. (2020, April 15). My daughter and I were diagnosed with autism on the same day. The New York Times. https://www.nytimes.com/2020/04/15/parenting/autism-mom.html O Donnell, A. (2019, May 20). Autistic dad shares his struggles with being a parent. BBC. https://www.bbc.com/news/uk-northern-ireland-foyle-west-48289636 Oliver, M. (1996) Understanding disability: From theory to practice. Saint Martin’s Press Oliver, M. (2013). The social model of disability: Thirty years on. Disability & Society, 28(7), 1024-1026. Orsini, M. (2012). Autism, neurodiversity and the welfare state: The challenges of accommodating neurological difference. Canadian Journal of Political Science, 45(4), 805- 827. Osorio, R. (2020, May 26). I am #actuallyautistic, hear me Tweet: The autist-topoi of autistic activists on twitter. Enculturation. http://enculturation.net/I_Am_ActuallyAutistic Pacton, J. (2016, February 3). 4 moms share what it’s like to be an autistic parent. Parents. https://www.parents.com/health/special-needs-now/4-moms-share-what-its-like-to-be-an- autistic-parent/ Parker, L. (2019). The truth about being autistic and a mother. Motherly. https://www.mother.ly/life/the-truth-about-being-autistic-and-a-mother Pearson, A., & Rose, K. (2020). A conceptual analysis of autistic masking: Understanding the narrative of stigma and the illusion of choice. Autism in Adulthood, 3(1), 52-60. Pellicano, D., Dinsmore, A., & Charman, T. (2014). What should autism research focus upon? Community views and priorities from the United Kingdom. Autism: The International Journal of Research and Practice, 18(7), 756-770. Pinto, P. (2010) Beyond the state: The making of disability and gender under neoliberalism in Portugal. In S. Braedley & M. Luxton (Eds.), Neoliberalism and everyday life (pp. 113- 135). McGill-Queens University Press. Pohl, A. L., Crockford, S. K., Blakemore, M., Allison, C., & Baron-Cohen, S. (2020). A comparative study of autistic and non-autistic women’s experience of motherhood. Molecular Autism, 11, 3. https://doi.org/10.1186/s13229-019-0304-2 Poslawsky, I., Naber, F. B., Van Daalen, E., & Van Engeland, H. (2014). Parental reaction to early diagnosis of their children’s autism spectrum disorder: An exploratory study. Child Psychiatry and Human Development, 45(3), 294-305. Pozo, S., Sarriá, E., & Brioso, A. (2014). Family quality of life and psychological well-being in parents of children with autism spectrum disorders: A double abcx model. Journal of Intellectual Disability Research, 58(5), 442-458. Pyne, J. (2021). Autistic disruptions, trans temporalities: A narrative “trap door” in time. South Atlantic Quarterly, 120(2), 343-361. Reinke, J. S., & Solheim, C. A. (2015). Online social support experiences of mothers of children with autism spectrum disorder. Journal of Child and Family Studies, 24(8), 2364-2373. Jessy Erin Fletcher-Randle Studies in Social Justice, Volume 16, Issue 2, 389-406, 2022 406 Rogers, C., Lepherd, L., Ganguly, R., & Jacob-Rogers, S. (2017). Perinatal issues for women with high functioning autism spectrum disorder. Women and Birth: Journal of the Australian College of Midwives, 30(2), e89-e95. Romero, M. (2018). Introducing intersectionality. Polity Press Rudy, L. J. (2020, November 21). Autistic adults as parents. Very Well Health. Retrieved December 2, 2020, from https://www.verywellhealth.com/autistic-adults-as-parents- 4147325 Sandham, E. (2017, December 27). My invisible struggles as a mother with asperger’s syndrome. The Mighty. https://themighty.com/2017/12/invisible-struggles-of-a-mother- with-aspergers-syndrome/ Shakespeare, T. (2006). Disability rights and wrongs. Taylor & Francis. Shakespeare, T. (2010). The social model of disability. In J. L. Davis (Eds.), The disability studies reader (pp. 266-73). Routledge. Strang J., van der Miesen A., Caplan R., Hughes C., daVanport S., & Lai M-C. (2020). Both sex- and gender-related factors should be considered in autism research and clinical practice. Autism, 24(3), 539-543. Suplee, P., Gardner, M., Bloch, J., & Lecks, K. (2014). Childbearing experiences of women with asperger syndrome. Journal of Obstetric, Gynecologic, & Neonatal Nursing, 43(S1), S76- S76. Track, L. (2014). Able mothers: The intersection of parenting, disability and the law. West Coast Leaf. http://www.westcoastleaf.org/wp-content/uploads/2014/12/2014-REPORT-Able- Mothers.pdf Walker, N. (2021). Neuroqueer heresies: Notes on the neurodiversity paradigm, autistic empowerment, and postnormal possibilities. Autonomous Press. Whiteley, P., Todd, L., & Carr, K. (2010). Gender ratios in autism, Asperger Syndrome and Autism Spectrum Disorder. Autism Insights, 2, 17-24. Zeman, L.D., Swanke, S., & Doktor, J. (2011). Strengths classification of social relationships among cybermothers raising children with autism spectrum disorders. The School Community Journal, 21(1), 37-51.