“It is more than the average parent goes through”: using the experiences of Australian parents of dyslexic children to draw a distinction between advocacy and allyship

ABSTRACT

Parents of dyslexic children often take on additional parental responsibilities as they seek to ensure fair and equitable access to education for their children. Often framed as advocacy, this paper explores the ways in which the term allyship may be well placed to represent the complex primary adjacent and vicarious disability experiences parents of dyslexic children have within schools. Drawing on interviews with 10 Australian parents, this study found that parents of dyslexic children felt they took on additional responsibilities to support their children within the school context and externally. This paper contributes a conceptual lens for viewing these activities as a form of allyship, rather than traditional understandings of advocacy. Findings highlight the need for greater recognition and understanding of the extensive responsibilities assumed by parents of dyslexic children and the ways in which their allyship roles within school settings can impact them.

Introduction

Within the context and history of formal education, there is greater recognition of the diversity of parental types (biological, adoptive, foster, step, kinship) (Brown, 2019; Harry & Ocasio-Stoutenburg, 2021; Parke, 2013). Equally, the role of the parent, a term used within this paper to mean any adult who takes on the primary caregiving role for a child, has changed dramatically, particularly over recent decades (Adams & Christenson, 2000), with greater involvement of parents in supporting the educational outcomes of their children (Huscroft-D’Angelo, Farley, Hurley, Lambert, & Trout, 2022). However, for parents of disabled children in schools, such as those parents with dyslexic children, there is often the expectation and experience that they take on significant additional responsibilities in the education setting in order to enhance their child’s chances of success (Burke, Tovar, & Rios, 2022). These additional responsibilities go beyond a focus on positive academic and well-being outcomes for their child, to include efforts to address fair and equitable access to education (Burke et al., 2018).

The actions parents undertake to support their dyslexic child’s academic and well-being outcomes have been traditionally viewed as parental advocacy (Burke, Tovar, & Rios, 2022; Harry & Ocasio-Stoutenburg, 2021; Nevill, Savage, & Forsey, 2022; Rossetti et al., 2021; Schraml-Block & Ostrosky, 2022). However, advocacy, defined as actions taken by an individual to benefit the social group to which they belong (Gray & Gayles, 2018), may be insufficient in fully capturing the context of parents supporting their disabled child, particularly given that the parents are not necessarily themselves members of the disability and/or child social groups. Instead, the term allyship, defined as the actions those in dominant social groups take to support those in a non-dominant social group (Radke, Kutlaca, Siem, Wright, & Becker, 2020), may be far more appropriate. While the term allyship has traditionally been less used in the disability context and more in discussions on race and sexuality or gender, we argue that this term is very relevant in the case of these parents, who are ostensibly members of the dominant social group, seeking to support their dyslexic child who are members of a non-dominant social group in the school environment. Adopting the term allyship allows the discussion to remain person and disability centred, because it does not presume to conflate the experience and social position of the child with the experiences of the parent.

Additionally, the distinction between advocacy and allyship enables a more nuanced understanding of the relationship between disability experience and the proximity to the person who holds the disability identity. As described by Gee (2000), identity is formed through our interactions with environment, institutions, language and the affinity with social groups that stem from these interactions. Disability identity is the way in which a disabled person sees and understands themselves, and how this informs the ways in which they interact with the world around them and make meaning from these interactions (Forber-Pratt, Lyew, Mueller, & Samples, 2017; Zapata, 2019). No two people will have the same experiences, and indeed a disability identity development is a unique phenomenon that non-disabled individuals cannot experience (Forber-Pratt, Lyew, Mueller, & Samples, 2017). It is for this reason that it is necessary to recognise that disabled children, and the parents who seek to support them, are acting from different social groups and their identity as disabled or non-disabled will influence and be influenced by their interactions with the education setting. Allyship as a term reflects this important difference.

Further to this, current descriptions of parental actions and behaviour in supporting their dyslexic child in the education setting in Australian parent-school partnership policy, such as the Family-School Partnerships Framework (Australian Government Department of Education, 2021), do not fully reflect the complexity of this parental experience. While parents of dyslexic children become allies to their children to safeguard their child’s education and well-being (Levi, 2017), their voices are largely absent from the literature on school-based dyslexia experiences (Abetz, 2022). This is of concern as this lack of insight into parental experiences and allyship leaves little understanding of how their experiences relate to their child’s disability identity, which in turn prevents a complete understanding of the impact parent school-partnerships for parents of dyslexic children.

At this point, the current research exploring the types of actions parents take to support their children in the education setting is problematic because it limits what is known about the processes the parents engage in and the conditions they endure (Burke, Tovar, & Rios, 2022). There exists an opportunity to further explore and understand the types of actions parents adopt as allies from their position within the dominant social group, and how these actions relate to their child’s disability identity. This type of data has the potential to reveal the nuances in the relationship between the parental experience and how it relates to the disability identity of their child. Further, while these actions are experienced by parents, it is noted that these are primary adjacent responsibilities, that is first-hand or primary experiences that the parent has adjacent to their child’s disability identity (Leslie, 2024).

These current gaps and nuanced aspects of parental experience in the education setting were the motivation for Author 1’s study, where the intent was to deepen the understanding of the allyship experiences of parents of primary-aged dyslexic children within the school context. This paper reports on insights that emerged from interviews with 10 parent-child dyads in Australia. The paper draws on a unique conceptual lens to report on parent’s perceptions of their own allyship.

Literature review

Dyslexia

According to the Diagnostic and Statistical Manual (5th Edition), dyslexia is defined as a Specific Learning Disorder with impairment in reading (American Psychiatric Association, 2013). Dyslexia is a neurodevelopmental disorder affecting 5–17% of the population (Yang et al., 2022) that presents as difficulties in phonological processing that impact on reading fluency, accuracy and comprehension (Shaywitz, Shaywitz, & Shaywitz, 2021). In Australia, dyslexia is considered a disability under the Disability Discrimination Act 1992 (Cth), with schools required to provide reasonable adjustments and supports for students either diagnosed with or suspected of having dyslexia (Australian Government Department of Education Skills and Employment, 2020). Through the social model of disability there is greater recognition of the role the environment plays in disabling an individual (Shakespeare, 2006), and in this case the school context can exhibit systemic and cultural barriers that a dyslexic child may find disabling (Riddick, 2001). To this end, this paper acknowledges the way that parents seek to reduce the barriers their dyslexic children experience within the school environment.

The experiences of parents of dyslexic children

The experiences of parents of dyslexic children are gathering more attention in educational research as the emphasis on parent-school partnerships is increasing (Delany, 2017; Levi, 2017; Leitão et al., 2017, Nevill and Forsey, 2022b; Wilmot, Pizzey, Leitão, Hasking, & Boyes, 2023). A scoping review conducted by Anthony et al. (2024) of 23 articles published between 2013 and 2023, representing seven countries, found that the experiences of parents of dyslexic children could be categorised into three central themes that centred around the pathway to assessment, how parents engaged in the diagnostic process, and the coordination of supports after diagnosis. Broader social and political influences were identified as an additional influence on the experiences of parents as they sought to support their child. These themes are reflected in the literature on the experiences of Australian parents of dyslexic children that reveal how parents take on additional responsibilities in order to support their dyslexic children (Nevill & Forsey, 2022b), can feel exhausted and overwhelmed because of the additional workload (Wilmot, Pizzey, Leitão, Hasking, & Boyes, 2023), and become “fierce but reluctant warriors” (Delany, 2017, p. 107) as they navigate the schooling system to support their child.

Advocacy and self-advocacy

The language used to describe these parental actions is inherently linked to the power and status held by children, parents and educators. Traditional definitions of advocacy refer to actions whereby one person speaks on behalf of another person on a matter or issue (Wolfensberger, 1977). This is what Foucault described as dominant group members using their position of privilege to enact “productive power” exchanges, whereby they utilise their membership in the dominant group to support those in marginalised groups (Razzante & Orbe, 2018, p. 356). Equally, Harry and Ocasio-Stoutenburg (2021) positioned parental advocacy as the act of seeking equitable educational services through the approved or normative processes, and that the driving motivation for parental advocacy was the desire to see one’s disabled child “matter in the eyes of others” (p. 189).

Studies on the experiences of parents acting to support their disabled child give some insight into the actions of parents but use the term advocacy loosely. For example, a study by Rossetti et al. (2021) explored the systematic and individual advocacy of parents of disabled children. While highlighting the important gains made by parents who supported their child in the education setting, no clear definition of advocacy was provided. Similarly, Burke, Tovar, and Rios (2022) defined advocacy as speaking on behalf of a disabled person to support their needs and strengths. While the study gave detailed insight into the experiences of parents, their definition of advocacy was problematic in that it asserted that the parents spoke for their child, and thus potentially silenced the child’s agency to speak for themselves.

In addition to the term advocacy, the term self-advocacy is also evident in the literature on disabled children. Where advocacy refers to those who speak on behalf of others, self-advocacy refers to individuals speaking for themselves (Glumbić, Đorđević, & Brojčin, 2022). This is in line with Freire’s (2008) assertion that those in subordinate social groups need to act for themselves if they seek to address the inequities they face. In their review of the early literature on self-advocacy, Test, Fowler, Wood, Brewer, and Eddy (2005) found that there was a lack of consistency in the literature in the definitions of the term. They concluded that greater clarity around terminology would assist teachers and parents and service providers to not only understand the concept but support better outcomes for students. More recently, Koca, Sart, Sakız, and Albayrak-Kaymak (2023) defined self-advocacy as the act of speaking in favour of a particular issue in a way that communicates one’s own needs. While these studies showed a still-evolving understanding of the term self-advocacy, missing from Test, Fowler, Wood, Brewer, and Eddy (2005) and Koca, Sart, Sakız, and Albayrak-Kaymak (2023) reviews was consideration of social group dynamics, that is the interactions between dominant and marginalised groups, leaving room for further exploration about how terminology reflects the social constructs of disability.

Advocacy v allyship

Concerns about the power that language has in conveying social messages about the worth and value of disabled people are driving current conversations on disability terminology (Dunn & Andrews, 2015; Ferrigon & Tucker, 2019; Pepper, 2016), as well as reflecting current social constructs and ideologies on disability (Goodley, Lawthom, Liddiard, & Runswick-Cole, 2019; Olkin, 2001). Thus, choices of terminology, such as between allyship or advocacy, present as a significant issue with potentially deleterious ramifications. The extant literature often uses the term advocacy to describe the actions parents take on behalf of their disabled children in order to support their development and challenge discrimination in the education setting (Burke, Tovar, & Rios, 2022; Harry & Ocasio-Stoutenburg, 2021; Nevill, Savage, & Forsey, 2022; Rossetti et al., 2021; Schraml-Block & Ostrosky, 2022; Trainor, 2010). However, definitions of advocacy do not take into account the mechanisms that maintain social group power hierarchies and the importance of marginalised groups being able to speak for themselves (Freire, 2008).

With allyship, those in positions of privilege and power derived from membership in the dominant group need not maintain social power hierarchies. This underlines the differences between advocacy and allyship where advocacy more specifically refers to taking action in support of one’s own social group, and allyship refers to taking action to support an individual in another, marginalised, group (Gray & Gayles, 2018). This concept was extended by Vosloo (2020) who stated that the use of the term ally relied on an understanding of who held positions of power and privilege and a critical consideration of these power relations.

While the literature presents a comprehensive understanding of the social power dynamics between privileged groups, and how this power can be used to benefit marginalised groups, it is yet to be used as a lens to view the actions parents of dyslexic children undertake in the education setting. Equally, it allows those with privilege and power to use that power to oppose discrimination and marginalisation and those in the marginalised and oppressed groups to speak for themselves (Pratto, Sidanius, & Levin, 2006; Razzante & Orbe, 2018). Parents of dyslexic children are positioned in the dominant group of adulthood and are likely either non-dyslexic, or not diagnosed, and are positioned in the dominant group of (perceived) neurotypical adults. From their vantage point in the dominant group, parents have access to resources and status that their children do not, allowing them to partake in allyship practices that their children cannot (Petri, Beadle‐Brown, & Bradshaw, 2020). However, educators can maintain their power and privilege by resctricting the range of acceptable parental allyship behaviours (Saltmarsh & McPherson, 2022).

Allyship can be seen as actions that stem from interpersonal relationships and an awareness of social inequality faced by someone with whom the ally has a close connection. In a study of allyship, DeTurk (2011) found that allies spoke on the topics they knew about, indicating that allyship was closely related to the prior experiences and schema they had surrounding the individual they were an ally to. Further to this, DeTurk (2011) and later Sumerau, Forbes, Grollman, and Mathers (2021), described how those acting as allies had a strong interpersonal relationship with the person who held a marginalised identity, and this could distance them, or “other” them from the prevailing or dominant group. Additionally, allyship was seen as a means by which social transformation of inequality could be remedied. Though providing an insight into the experiences of individuals who identified as allies, Sumerau, Forbes, Grollman, and Mathers (2021) study only considered those who identified as allies to “racial, ethnic, gender, and/or sexual minorities” (p. 369) and did not extend to those who identified as an ally to the disability community. While DeTurk’s (2011) study included allyship to the disability community, it was part of a broader consideration of allyship and was not specific to disability or the education context.

In recent years, there has been increasing reflection on the nature of allyship and the use of the term to describe inter-group social interactions. In a review of the rhetoric on allyship, Bourke (2020) defined allies as holding a social position of privilege and dominance and using this power and authority to support a chosen marginalised social group. Additionally, the author raised concerns that the literature on allyship identity as a broad phenomenon was limited and there was scant research into allyship towards specific social groups. In a similar reflection, Radke, Kutlaca, Siem, Wright, and Becker (2020) considered reasons how individuals in dominant social groups were motivated to undertake actions that supported those in marginalised groups. The authors spoke of how privileged group members would engage in normative allyship actions that conformed to social patterns of challenging the status quo, as well as non-normative allyship actions. Further to this, Radke and colleagues highlighted that those in dominant social groups undertaking allyship actions could be seen to be more effective at reducing discrimination than those in the marginalised group who undertook the same actions, further illustrating the differences to advocacy. As with Bourke (2020), Radke, Kutlaca, Siem, Wright, and Becker (2020) stated that there had been limited research into the participation of dominant social group members in allyship actions. It is worth noting that both Bourke (2020) and Radke, Kutlaca, Siem, Wright, and Becker (2020) referred to allyship in social groups based on race, gender and sexuality, however neither mentioned allyship to disability group.

The somewhat interchangeable use of the terms advocacy and allyship is evident in the literature; however, the former does not recognise social power dynamics or the membership of individuals as either dominant group members or marginalised group members. The latter term, allyship, describes the actions of those who seek to support those in marginalised groups, yet the term is still to be applied to disability in an inconsistent way. This paper seeks to explore the notion of allyship as an action taken by parents of dyslexic children to support them in their formal education and the power exchange that occurs between parents and educators.

Designing the study

In this paper, the authors report on the findings from a larger research project conducted as part of Author 1’s Doctoral research project. This project sought to investigate the relationship between the actions undertaken by parents of dyslexic children in the education context and their child’s disability. Semi-structured interviews were conducted with 10 parent-child dyads to gain insight into their experiences within the primary school setting. Rabaey, Hepperlen, Manley, and Ament-Lemke (2021) says there is limited literature that looks at the caregiving experiences of parents of children with disabilities. Therefore, the focus of this paper is the parents who are caregivers to give voice to parents’ experiences. Critical to the core values of this study was the need to provide ways for the parents’ voices and authentic lived experiences to be foregrounded as a means of addressing power differentials in the research methodology and in the social constructs we sought to investigate (Coyne & Carter, 2018; Hornby & Lafaele, 2011; Pennycook, 2001). This study was granted ethics approval by The University of Southern Queensland Human Research Ethics Committee (Approval number ETH2022–0085).

Conceptual framework

This project is framed by the conceptual lens on parental allyship developed as part of the first author’s Doctoral studies (Leslie, 2024), which posits that disability experiences are had by both disabled and non-disabled individuals, yet differentiated by the proximity to the disability identity. In this framework, illustrated in Figure 1 (Conceptual Lens on Disability Experience as a Primary, Primary Adjacent and Vicarious Experience) the actions, behaviours, and attitudes of the parents are framed as allyship because of the proximity of these experiences to their child’s disability identity. The lens presents the view that while the children, who are dyslexic and therefore members of the marginalised disability community, have first-hand and primary experiences related to their dyslexia, their parents are having first-hand and primary experiences that sit adjacent to the child’s disability identity. Further, this lens shows how parents of dyslexic children are argued to have, by virtue of their allyship, vicarious experiences when their children share their primary experiences (McCann & Pearlman, 1990; Newell & MacNeil, 2010; Yip, Chung, & Chae, 2022). This recognition of the nature of parental experience as something that happens adjacent to the child’s disability is significant as it serves to acknowledge that these experiences stem from the child’s disability identity but are, by virtue of this adjacency, separate.

Figure 1. Conceptual lens on disability experience as a primary, primary adjacent and vicarious experience. Reproduced from Leslie (2024). The experiences of Australian dyslexic children and their parents: An exploration of allyship and parent-school partnerships [Doctor of Philosophy, University of Southern Queensland].

Participants

Participants were recruited from dyslexia support groups via social media, across states and territories across Australia, and all schooling contexts (State, Catholic, independent) (n = 10 parents). Criterion sampling required the parents to have a child aged 8–12 years old with a confirmed diagnosis of specific learning disorder/dyslexia. Further parents were required to have sought to support their child in the education setting by, at a minimum, communicating (either in person or in other ways) with their school in the last 12 months. Children of this age were the focus of the recruitment as their parents would be able to share experiences regarding the diagnostic process and their interactions with their child’s school in the early years of formal education. An overview of the participant demographics is shown in Table 1 (Participant Overview).

Table 1. Participant overview.

Parent	Age	Gender	Child	Age	Gender	State	School context
Bronte	51	F	Darcy	10	M	Qld	Lutheran
Catherine	48	F	Liz	11	F	Vic	State
Jane	47	F	Charles	10	M	ACT	Independent
Grace	41	F	Lydia	11	F	Qld	State
Helen	51	F	William	12	M	Qld	Catholic
Zillah	42	F	Marianne	10	F	SA	State
Blanche	46	F	George	11	M	NSW	State
Frances	40	F	Elinor	12	F	Qld	Catholic
Nelly	38	F	Rob	9	M	SA	State
Eliza	45	F	Brandon	10	M	Vic	State

Data collection & analysis

Semi-structure interviews with participants were conducted over 12 weeks through the video-conferencing technology Zoom, with children given the option to have their parent present or close by in an adjacent room, while they were interviewed separately. Particular attention was given to building rapport and connection with the participants as a means of ensuring rich data was collected, while also ameliorating potential risks associated with interviewing on a sensitive topic (Leslie, Brown, Larsen, & Fanshawe, 2023). Participants participated in two sessions; the first was designed to build rapport with the participants and gain verbal consent. The second session was a recorded semi-structured interview which were then transcribed using Panopto.

Qualitative content analysis (QCA) provided both a descriptive and interpretative understanding of the data (Vaismoradi, Turunen, & Bondas, 2013), and supported a systematic and iterative approach to coding (Schreier, 2019). Using QCA, the transcripts were reviewed to identify meaning units, or relevant phrases or sentences, that included discussion of interactions in the education setting, between the participant and another person. Next, the meaning units were then condensed by removing repeated or irrelevant words in order to retain the core meaning (Mayring, 2014) and reduce the volume of data leading to levels of abstraction (Erlingsson & Brysiewicz, 2017). This process is exemplified in Figure 2 (Levels of Abstraction) with a sample of the data. Deductive coding was applied using codes derived from the originating PhD project’s conceptual framework (See Figure 1) (Leslie, Brown, Larsen, & Fanshawe, 2023).

Figure 2. Levels of abstraction.

A second review of the condensed text was undertaken looking for possible inductive codes that could be created. When a common code was evident across three transcripts, a new definition and rule was created to support the further application of that inductive code (Schreier, 2019). Additionally, a third read of the reduced transcripts revealed subsequent coding categories of allyship actions, positive and negative allyship experiences, allyship expertise, the extent and impact of allyship and barriers and attitudes toward allyship were determined through deductive analysis of the interview transcripts.

Findings

Several key themes relating to allyship emerged from the interview data and the participants lived experiences, including perspectives from both the parents about their own allyship, as well as from the children about their parent’s allyship actions. The following section reports on (i) the types of allyship actions undertaken by the parents as a primary adjacent experience, (ii) the vicarious experiences that influence and are influenced by allyship, (iii) the social and emotional impact of allyship; and (iv) the positives of allyship. These data demonstrate how the parents engaged in allyship, as distinctive to that of advocacy, as they used their position within the dominant social group of adulthood, in order to seek support and better outcomes for their children. These themes reflect the unique shift in the role of the parent when allyship is an additional responsibility beyond that of a typical parent.

Allyship actions and behaviours as a primary adjacent experience

Parents discussed a range of actions that they engaged in that were designed to leverage their position as parent in seeking support for their child. For all parents (n = 10), these actions primarily occurred in the school context in the form of communicating with educators and administration staff, receiving training in specific intervention programs, and informally supporting other families. In some instances, the parents described how the onus of communicating with the school was on them. For example, Bronte worked hard to contact teachers and school leaders alike to try and set up times to discuss the needs of their child, explaining how she was “proactive in asking for meetings with all stakeholders”. Similarly, Catherine lamented the fact that she felt like she started from scratch every year, explaining that “I’ve had to force the SSG [individual education plan] meeting every year in primary and high school. It’s like I knock on the door every year and go surprise, they’re dyslexic”. Parents felt as though the relationship with their child’s school, and thus the commitment to support their child, was not reciprocated.

Several parents (n = 3) reported times where their child’s school sought to assert their power over the parents, with their emails being forwarded to administration staff, rather than fostering open and positive communication with the teacher. Helen, eager to connect with her child’s teacher and show her interest, sent her child’s teacher an email saying, “Just wondering how the punctuation is going … ” Rather than receiving a response from the teacher, Helen’s email was forwarded to the principal. Helen explained that “the principal then just came back and said, I believe you’re questioning our set up. [They] didn’t answer the punctuation question”. Helen expressed that she felt frustrated that her routine communication was not addressed and was perceived by the school as criticism. Similarly, Blanche felt that communication sent to teachers was escalated unnecessarily, stating that “If I send anything with a bit of bite, it gets directed to the deputy principal who bites back”. These types of comments by parents reflect that they felt that their communication was not perceived as favourable by the school and the parent’s attempts to use their position of power to collaborate with the school were not well received.

On occasions, parents felt they were charged with educational responsibilities that they did not have the qualifications or training to undertake. For example, Bronte shared that following a conversation with her child’s teacher about educational adjustments “the school asked me to work out which [screen and paper] colours work for him but how do I work out which ones are right? I am his mum, not an educator. I don’t have the knowledge. Others reported that they felt compelled to support their child, by undertaking training in literacy and numeracy interventions, normally considered specialist training for teachers, to provide the support needed by their child because it seemed unavailable through the school. Eliza shared one such instance, explaining how her partner had “just completed the Sounds Write Training and does Sounds Write with him (their child) a couple of mornings a week when he’s with her”.

Helen similarly undertook training to support her son in mathematics saying, “I’m doing Maths U See and there’s only so much I can personally fit in, and he can take”. Helen was then asked by her child’s teacher “Why don’t you do a home school program in writing?” Further to this request, Helen “was told by the Chinese teacher that maybe you can learn Chinese at the same time”. Helen reported feeling overwhelmed by the additional educational responsibilities specifically to support her dyslexic child’s educational needs.

Assistive technology was also identified as an additional tool that was required to support dyslexic children. Zillah explained the lengths she went to as a parent to obtain assistive technology for her child,

I rang up our special education unit that allows you to borrow things in preparation for the following year and say, “Can I borrow it for the beginning of the year?” So I borrowed this C Pen for her and she did use that. Then they ended up saying they had them at the school anyway after I got one and, and then they would give it to her to use, but then they lost the charger, and nobody ever bothered to try and find the charger. That was frustrating.

In this instance, the school exerted their power by not implementing the reasonable adjustments that Zillah had used her power to acquire.

Parents also discussed the additional responsibility they were required to take on outside the school context. The majority of parents (n = 8) identified the need for additional tutoring outside of school. Three parents sought support from a tutor, while five parents described undertaking tutoring activities themselves at home. Some parents, such as Bronte, joined SPELD (Supporting People Experiencing Learning Difficulties), an Australian specialist organisation dedicated to supporting those with learning disabilities to gain additional support. Others, such as Jane, said it was “hard work” and lamented that not everyone has the ability to support their children academically, commenting that “other parents go ‘it’s too hard’”. These parents therefore perceived the need to act on behalf on their children, making decisions that they felt would best address the inequities in their education context.

More than half the participants in this study (n = 6) had identified and acted on the need to undertake systemic allyship. Some parents reported engagement in activities to raise awareness of dyslexia within the community. For example, Jane was involved in fundraising events such as “Code Read, Charles’s got the t-shirt, we all wear them. In dyslexia month it’s all on Facebook”. Helen also felt it was important to increase public awareness both within the school by “set[ting] up a Facebook page within the school [community] and through social media showing the great people in the world with dyslexia”. Beyond sharing needs on social media, one parent (Jane) had contacted their state’s teacher registration board to communicate the negative interactions she and her child had experienced with that teacher. Other parents, Catherine, Blanche and Nelly disclosed that they had contacted their state’s education department or Minister to try and influence systemic change regarding school-based supports and parent-school partnerships, as they felt that they did not have the power to do so at a school level.

Nelly shared that their child had ongoing negative experiences with their teacher, seemingly due to the teacher’s limited understanding of dyslexia, which resulted in explosive behaviour at school. Nelly wanted to instigate change and used her position as an adult to have “a meeting with the Education Minister for the State … Education Minister for South Australia. And we laid it all out on the line”. Nelly reported that the impact on her son had been so significant that “I think he’s got PTSD [post traumatic stress disorder] from his experiences. He is so negatively charged about school. I don’t know how he’s going to go out a new school even”. These experiences showed that parents wanted to increase awareness about dyslexia and its impact on education through informal and formal channels.

Of the parents participating in this study, half (n = 5) had used their position as parent and adult in a semi-public role to benefit other dyslexic children and their parents. Bronte was happy to provide support to a friend, undergoing similar experiences with their dyslexic child when “asked if I would speak to [their] teacher and I enthusiastically said ‘of course!’”. Bronte then provided resources about dyslexia and appropriate educational interventions and adjustments.

Similarly, Catherine provided informal support for a friend and reported that, “since I’ve been doing this, I’ve had over 100 families contact me”. Jane felt she had an obligation to share her knowledge with others declaring that “100% (my role is also supporting others). If I can say to people, one in five have dyslexia. I’ve got a library of books and I hand them out to my educator friends”. Nelly saw the potential to support not just her own child, but other parents and their dyslexic children, sharing, “I honestly feel like I’ve done the best to create change not just for Rob, but for the greater good”. For these parents, allyship extended beyond their own child as they became allies to others in the dyslexic community. The parents felt a responsibility to use their position make a difference both in the present and into the future.

The parents felt that they engaged in a variety of actions, in the role of ally, such as developing knowledge to understand their child’s needs, provide interventions for their child, communicate with their child’s teachers and attempting to initiate systemic change and support other families. They believed that these were responsibilities they had to take on in order to ensure their child had access to academic and well-being development. These allyship actions were taken as the parents sought to use their position in the dominant social group, that of adulthood, which sat adjacent to their child’s disability identity, to initiate change or to achieve positive academic and well-being outcomes for their child.

Vicarious experiences as they relate to allyship

In addition to primary the adjacent experiences shared by parents, parents also described vicarious experiences, that were particularly upsetting for them. Parents mentioned that these vicarious experiences occurred when their child shared their own first-hand negative experience from school, or where the parent observed what their child was enduring, that then led to the parent being emotionally affected by it in a similar way to how their child was impacted. Bronte’s words captured the difficulty of these types of vicarious experiences, sharing that “it’s pretty hard knowing that it affects him”.

Nelly discussed a particularly distressing situation when her son communicated to her that “he wished he was a robot so that he could turn himself off”. Nelly described how this was a pivotal moment, for both her and her child. She explained how she thought to herself, “You’re effectively telling me you feel suicidal like at seven years old, that you don’t feel like you’re worth anything”. Nelly went on to share that “it was hard, really hard stuff. This is breaking my child”. For this parent, the experience directly impacted her child, and vicariously impacted her as well.

Parents shared other examples of emotional impact. For example, Bronte explained that “seeing Darcy struggle with writing caused me heartbreak”. Likewise, Grace was aware of her emotional response to her daughter’s struggles when she shared, “I suspect because of how I was feeling for her story, what she was feeling in grade 3 when she was highly anxious”. In recalling a time when her daughter, Marianne, came home distressed, Zillah explained that the relief teacher had kept her in because she said she hadn’t done the work well enough even though Marianne had put her best effort in. Zillah shared that “Mum, they told me I had to do my best work. So, I like work on every single letter. I wrote it so neatly”. Describing her own emotional response, Zillah appeared to still be emotionally affected by this moment, sharing that,

I was trying really hard not to bawl my own eyes out when I was, you know, talking to her about it. And then I’m like, I kept it together while I was talking to her. And then I … and then I left, and I got really upset.

Zillah’s emotions were vicariously heightened through her child’s recount of their primary experience at school.

In a similar scenario where George had a negative experience with a teacher, his mother Blanche recalled how George had been told “you better hurry up, otherwise you won’t get your artwork displayed on the wall”. Blanche vicariously felt the same heightened emotions of her son after he came home from school to say how the teacher had not included his artwork. George then shared with his mother that “mine’s not up there because he [the teacher] didn’t hang it up on the wall because I wasn’t fast enough”. Blanche stated, “I’ve got so much anger because of the incident”. The sharing of George’s primary experience at school led to a transfer of emotions to his mother.

For Frances, the transfer of emotion came when reasonable adjustments had not, as far as they were concerned, been made in the classroom and Elinor “came home one time with bite marks down her arm because she was gnawing on an arm and nobody in the classroom picked it up”. Elinor’s emotional distress in the classroom led Frances to feel “really frustrated, really angry, because one of the biggest things we talked about as a strategy for Elinor is positive reinforcement”. The parents explained how their children’s experiences within the classroom impacted their own emotions vicariously.

Though parents reported heightened negative emotions that resulted because of shared vicarious experience, they also spoke of the allyship actions they undertook as a result of these shared experiences. After their child shared an experience perceived as negative, the parents took steps to comfort their child and to intervene to prevent the cause of the negative experience reoccurring, or to seek some form of resolution. So, while vicarious experiences were a result of allyship, they also instigated further allyship actions.

The social and emotional impact of allyship

One theme that emerged among the participants (n = 6) was that of feeling othered, as a result of their allyship and thus had a lesser status than educators and other parents. Othered in this case is defined in the context of this paper to mean to be made to feel different from others or excluded from a social group (Tarvainen, 2019). Parents felt they were being isolated, ignored or treated differently by educators or parents of other children because they were considered to be difficult due to their allyship actions. Bronte explained “we were labelled as that parent by the school and other parents”. Frances explained that she felt the school perceived her as follows:

…in the early stages I was just that annoying parent that was just constantly harping on … beating the drum and nobody was listening. I think some teachers just thought I was annoying. Here she is complaining yet again.

Jane expressed that “most of the teachers go running when they see me” while Helen echoed this sentiment saying, “I think the staff are cautious of me because I’m that person”. Helen felt that this cautiousness extended across many of the staff in her case, sharing “I would put money on the fact we’re spoken about when they’re in the corridors”.

For the majority of parents (n = 7), there was an emotional toll from the cumulative experiences had by the parents over the primary school years. For example, Eliza expressed a sense of resignation stating that, “it’s frustrating and it’s heartbreaking but it is also just what I have to do”, a sentiment shared by Catherine who conveyed that her sense of duty to her child overrode her own emotional needs saying “it’s exhausting sometimes, but you’d roll over any stone for your kids”.

Further to this, Zillah spoke of the impact on her cognitive load that was created by her allyship, explaining that “it’s pretty exhausting and it’s constantly on your mind knowing that your child’s not thriving in that environment”. Emotional exhaustion was also reported by Frances who spoke about how her allyship to her daughter included emotionally supporting her daughter after incidents that occurred at school that left Elinor distressed. Frances shared that, “it takes all this time to actually get back to that happy place where she’s loving life again and she actually wants to go to school. It’s horrible. It’s so much work … so much work”.

For some parents, they felt they had not or could not do enough for their child, or that their position in the dominant group was not sufficient to secure the support they sought, evoking feelings of guilt about their own parenting. As Zillah stated,

…you try and do everything you can. But, you know, I’m working. I’ve got another kid. And, you know, I try to do what I can, but I always think I should be doing more like because, the school is doing what they can, but it’s not enough. So, I just think I need to be doing more.

Other parents were concerned that in being an ally, their relationship with their child was, or would be negatively impacted. Helen shared that she found “it difficult because I don’t want him to look back and remember me as the one who is trying to make him do the work. But at the same time … I had to do it”.

Feelings of inequity appeared to impact on Nelly, Blanche and Jane who felt that they were required to do so much more than other parents due to the necessities of their allyship. Nelly explained, “when I talk to other people and they don’t have to do it [allyship] to get the same outcome, it feels so grossly unfair… It shouldn’t be so difficult”, while Blanche believed “it is more than the average parent goes through”. For Jane, the inequity was not always seen by other parents who were not in the same situation, exacerbating their sense of isolation.

Some parents found that they needed to constantly work on managing the anger they felt when their child shared their negative school experiences, in order that they could focus on being the parents and ally they needed to be. As Bronte explained, “I get angry and upset, but I use coping strategies because anger doesn’t help Darcy”. Helen explained that,

… part of the difficulty as a parent of child with dyslexia is that you have friends who think the teacher is the best thing. But they don’t have a child with a disability. I have a child with a disability that she won’t acknowledge, therefore you have no idea. They make you feel bad because they’ve never had the same issues. As a parent, having a kid with a disability you can’t see is hard.

In the eyes of these parents, being a parent and ally of a dyslexic child can be a lonely and disempowering experience. This was largely due to feeling isolated from both educators and blocked from engaging in parent-school partnerships. Further, parents felt a social exclusion from other parents as their allyship experiences were not shared with parents of non-dyslexic/non-disabled children.

Positives of allyship

Despite the negative experiences and emotions that were the result of the allyship reported by these parents, there were a number of positives that came from their actions. Many parents (n = 6) reported at least one aspect of allyship that they saw as beneficial. For Catherine, allyship had created an opportunity to spend more time with her children saying, “if this is what we’re doing rather than something else, then there’s no reason why we can’t like reading at night. I just make it a special moment in my day, and let them know that”. Helen reported feeling similarly, saying, “just being here has meant that she seeks help when she needs it. And that’s been a beautiful part of our relationship” as did Frances who shared, “I think it’s been a fantastic opportunity to be a lot more in tune with Elinor and life because she really needs all the support in the world”. Some parents, such as Zillah, stated that their allyship has resulted in their child being better able to advocate for themselves and this was seen as a positive outcome. Zillah shared that, “it’s something that she’s going to have to learn to advocate for herself sometimes. And I think that’s been a good learning curve that’s come out of that”.

Another perceived positive that resulted from parental allyship was the result of the allyship enacting change for their child, and also for others who may be experiencing similar educational barriers. Jane spoke about how providing the school with resources and knowledge had led to increased support for other families, sharing that “some do read the books and now are noticing students in their class who might be dyslexic. They’re having conversations with parents and raising concerns”. Jane noted that, from her experience, this change was predicated on the receptiveness of an individual teacher to her allyship actions.

Frances had a similar positive experience in having conversations with the school about early identification of dyslexia and early intervention strategies. She explained how, as a result of her allyship, “they [the school] changed and bought more tools for testing. They looked at the way they review the classwork. So not just has the child met the success criteria, have they demonstrated knowledge?”. In Nelly’s case, her allyship brought a sense of satisfaction that change had been achieved, stating, “I honestly feel like I’ve done the best to create change not just for Rob, but for the greater good. There’s nothing more I can do but hope”. Thus, it would seem that change is possible, but hard-won, and even when it does occur, it comes at a considerable cost, emotionally, socially, and financially, to parents.

Discussion

In this study, the actions that the parents undertook showed that they are more than advocates, but rather allies who: i) have primary adjacent experiences as they seek to support their child’s educational journey; ii) experience their own marginalisation as a result of their primary adjacent experiences; iii) share their child’s experiences vicariously and as such are emotionally impacted; and iv) serve to engage in actions that not only improve circumstances for their own child but for other parents and dyslexic children. These themes are now discussed with regard to the literature and the innovative conceptual lens that frames this study.

Primary adjacent experiences

The allyship actions of these parents were consistent with those outlined in the extant literature (Delany, 2017; Earey, 2013; Griffiths, Norwich, & Burden, 2004; Wilmot, Pizzey, Leitão, Hasking, & Boyes, 2023; Woodcock, 2020) and included (but were not limited to): (i) getting their child diagnosed with dyslexia, (ii) reading, or researching dyslexia and suitable interventions, (iii) sourcing and implementing assistive technologies, and (iv) undertaking professional development or training in specific programs. As a result of these activities, parents developed a certain level of expertise in dyslexia, which they sought to share with their child’s school and with other parents of dyslexic children. While some of these acts of allyship have been similarly reported in other research on the experiences of Australian parents of dyslexic children (Delany, 2017; Leitão et al., 2017; Levi, 2017) allyship actions evident in this study, such as sharing knowledge and physical resources with schools, are far less evident in the previous work. In this study, parents considered it essential that they build their own knowledge of the most appropriate interventions for dyslexic students in order that they could create change at a local (school) level.

For the parents in this study, their role as ally to their dyslexic child, led them to use their position of power to interact with their child’s school setting to ensure fundamental education and well-being needs are met (Leitão et al., 2017; Nevill & Forsey, 2022a) through a range of actions, such as meetings and communication with the school. While existing literature has identified the emotional impact of parenting a dyslexic child (Bonifacci, Massi, Pignataro, Zocco, & Chiodo, 2019; Carotenuto et al., 2017; Earey, 2013), this study has framed that within the allyship actions and primary adjacent experiences of the parents and that the parents’ use of their role within the social group of adulthood at times contributed to the feelings of exhaustion, anger and guilt.

Though the parents were part of the dominant social group (adulthood), parents still experienced feelings of marginalisation. While previous research has similarly reported on the emotional toll of parents’ activities, this study showed how their allyship to their child can distance them or result in them feeling othered by the dominant group to which they belong (DeTurk, 2011). In addition to this, parents can feel as though their allyship actions are not considered an acceptable use of their position in the dominant group (Vincent, 2017) and this may be a factor that affects their status in that group. Further exploration of the impact of the allyship role may help to explain why parents of dyslexic children report higher parental distress and different parenting styles when compared to parents of typically developing children (Bonifacci, Storti, Tobia, & Suardi, 2016).

Vicarious experiences

In addition to primary adjacent experiences, the parents in this study also had vicarious experiences, and these also tended to have a strong emotional impact on the parents (Branson, 2019; McCann & Pearlman, 1990; Wofford, Defever, & Chopik, 2019). Within the literature, vicarious experiences refer to those had when an individual shares their own primary experience with another with who they hold a close emotional bond (McCann & Pearlman, 1990). Vicarious experiences as a part of allyship are not a new concept, with parental allyship to children who are LGBTQI+ demonstrating how parents “walk in the shoes of their child” even when this may invoke negative consequences for them (Fingerhut, 2011, p. 20). This study has shown that such vicarious experiences are also evident among parents of children with dyslexia.

Findings from this study indicated that for the parents, vicarious experiences were the result of where their child shared an experience, related to their dyslexia, that resulted in them (the parent) having a heightened negative emotion. The close relationship and bond that existed between a parent and their child seemed to facilitate the transfer of strong negative emotions when the child shared their school-based experiences with their parent, consistent with Bonifacci, Storti, Tobia, and Suardi (2016) study that showed there is a correlation between the psychological well-being of dyslexic children and their mothers. Importantly, these vicarious experiences initially prompted parents in this study to further their allyship actions; however, after repeated vicarious experiences and negative primary adjacent experiences, some parents in this study reported feeling defeated by the system. This study has therefore highlighted the criticality of understanding the complexity of parents’ allyship responsibilities and work in the education of their dyslexic children.

Implications for research and practice

These findings have implications for researchers, parents, and educators. The paper contributes to the discussions on the experiences of parents of dyslexic children by providing a clear delineation between the terms advocacy and allyship. Clarifying differences between these terms is significant, as it will allow researchers to draw distinctions between the actions taken by those in the dominant group or marginalised group that seek to enhance the experiences of those in the marginalised group. Further, the distinction between advocacy and allyship provides researchers with more nuanced ways of understanding the nature of disability identity and experiences.

The distinction in terminology is of particular importance for researchers adopting a critical disability lens and desiring to recognise the voices of those who act from outside the disability social group, and those who hold the disability identity without merging the two. This is of significance for any researchers wanting to ensure that those in dominant groups do not speak on behalf of those in the marginalised group, safeguarding the right for those in the marginalised group to advocate and speak for themselves (Freire, 2008). Framing these actions as a form of allyship, offers a lens for future research, with greater emphasis on and consideration for the power differentials that are inherent in the oppression and support given to any marginalised group (Radke, Kutlaca, Siem, Wright, & Becker, 2020).

Further to this, this paper contributes insight into the perceptions of parents of dyslexic children and the emotional response they have to their allyship. As the parents experience heightened emotions because of their allyship to their disabled child, then there will be implications for the ways in which educators seek to build relationships and partnerships with these parents. Given that allyship is a significant aspect of the emotional bond between the parent and child, and that allyship leads to parents taken on additional parental actions, negative allyship experiences can result in a significant emotional toll on parents of dyslexic children. It is recommended that educators can seek to reflect on the allyship actions that parents undertake as a means of developing ways to work collaboratively with them. Doing so will enhance the academic and well-being outcomes for the child and foster strong parent-school partnerships. This has the potential to enhance parent-school partnerships and ultimately the academic and well-being outcomes of dyslexic students.

Conclusion

There is much that can be gained from a deeper consideration of the experiences of parents trying to support their dyslexic child’s education. Further to this, parents are acting as allies and this is having a considerable cost in many cases. If we are to better address the needs of these students, then we must have a better understanding of the ways in which parents are invited into, welcomed and supported through their allyship work. Understanding that allyship is a primary adjacent experience protects the primary experiences of disabled individuals as their own and ensures that their voice and agency is not usurped, yet equally recognises that those who do not hold the disability identity can also be impacted negatively because of the disability. This paper contributes a deeper understanding of parental allyship within the education context that will allow other researchers to then consider how the intersectionality, and multiple identities of the parent influence the nature of their experience and marginalisation in the school context.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

This research has been supported by the Australian Government Research Training Program Scholarship.