Growing up with dyslexia: Child and parent perspectives on school struggles, self‐esteem, and mental health

Abstract

Children with dyslexia, compared with typically reading peers, are at increased risk of internalising (e.g., anxiety) and externalising (e.g., aggression) mental health concerns; why this is the case is largely unknown. Our aim was to explore the socio‐emotional experience of growing up with dyslexia from both child and parent perspectives. In so doing, we aimed to gain a better understanding of self‐esteem and mental health in the context of dyslexia. One‐to‐one semi‐structured interviews with 17 children with reading difficulties (aged 9–14 years; 16 with a diagnosis of dyslexia) and their mothers (interviewed separately) were analysed using Braun and Clarke's reflexive thematic analysis approach with a neurodiversity lens. We developed three themes to address the research aim: (1) Different in a good/bad way; (2) Exhausted and overwhelmed; and (3) It takes a community: Family school connections. Children discussed having “worries” and experiencing school‐related stress and embarrassment. Mothers perceived children's internalising and externalising behaviour (meltdowns), school refusal, and homework resistance as emotional responses to children's school struggles due to poor “person‐environment fit.” Our analysis highlights the particular importance of parent support, friendship, and school‐connectedness for the wellbeing of children with dyslexia.

Practitioner Points.

• The language of neurodiversity and drawing on a strengths‐based approach during diagnosis and beyond is a useful framework.

• Regular emotion regulation breaks will support children with dyslexia during the school day.

• Schools and teachers can facilitate peer support in the classrooms and promote family–school connection.

• An individualised approach to supporting children is beneficial but needs to consider children's concerns about peer acceptance and the potential for embarrassment.

1. INTRODUCTION

Up to 10% of children experience severe and persistent reading difficulties despite adequate cognitive ability and educational opportunity; a figure that equates to approximately two to four children in an average‐sized classroom (Brimo et al., 2021; Castles, McLean, & McArthur, 2010; Claessen et al., 2020). When reading difficulties persist without an alternative explanation, a child can be diagnosed with a specific learning disorder with impairment in reading, otherwise known as developmental dyslexia (American Psychiatric Association [APA], 2013). Childhood reading difficulties, such as dyslexia, can negatively affect reading motivation (Morgan & Fuchs, 2007); academic self‐concept (beliefs about one's academic abilities; McArthur, Filardi, Francis, Boyes, & Badcock, 2020) and long‐term educational and occupational outcomes (Maughan, Rutter, & Yule, 2020; Smart et al., 2017). However, the difficulties for children who struggle to read go beyond the academic and occupational domains. When interviewed, teachers and parents express concern for the mental health of children with reading difficulties (Claessen et al., 2020; Leitão et al., 2017). Consistent evidence comes from cumulative cross‐sectional and longitudinal studies, which find that children with reading difficulties, compared to typically reading peers, are at elevated risk for mental health concerns, both internalising (e.g., emotional difficulties such as anxiety) and externalising symptomology (e.g., behavioural problems such as aggression; Donolato, Cardillo, Mammarella, & Melby‐Lervåg, 2021; Francis, Caruana, Hudson, & McArthur, 2019; Russell, Ryder, Norwich, & Ford, 2015). Understanding why childhood reading difficulties are associated with poor mental health, especially anxiety, is a stated research imperative (Boyes, Leitão, Claessen, Badcock, & Nayton, 2016; Francis et al., 2019).

Previous researchers posit that emotional difficulties (e.g., anxiety) arise as a secondary consequence of reading difficulties (Jordan & Dyer, 2017; Morgan, 2012). Low self‐concept (or related constructs such as low self‐esteem) is suggested to be the mechanism; negative feedback (e.g., receiving bad grades) may contribute to children developing a poor self‐concept or poor self‐esteem, known risk factors for mental health concerns among children broadly (Boyes, Tebbutt, Preece, & Badcock, 2018; McArthur et al., 2020; Terras, Thomson, & Minnis, 2009). Consistent with this account, a theme across the literature is the protective power of positive feedback from parents and teachers who understand dyslexia and provide emotional support (see e.g., Haft, Myers, & Hoeft, 2016; Singer, 2007). Relatedly, there is evidence that receiving a formal diagnosis of dyslexia can be protective of self‐esteem, possibly because it facilitates self‐understanding and/or social support (Glazzard, 2010; Leitão et al., 2017).

Whilst there is a wealth of literature examining self‐esteem (and related constructs such as self‐concept) among children with reading difficulties (Gibby‐Leversuch, Hartwell, & Wright, 2019; Livingston, Siegel, & Ribary, 2018; McArthur et al., 2020), few studies in this field have investigated these constructs in association with internalising/externalising symptoms. Qualitative accounts suggest that self‐esteem is salient in terms of the mental health of children with dyslexia (see e.g., Leitão et al., 2017; Riddick, 2010), but results from cross‐sectional studies are equivocal (see e.g., Boyes et al., 2018; Giovagnoli et al., 2020; Terras et al., 2009) suggesting the need for a deeper and more nuanced analysis to better understand self‐esteem in the context of dyslexia.

In terms of children's own resources, researchers find evidence which collectively suggests that their ability to cope adaptively is protective of self‐esteem (Doikou‐Avlidou, 2015; Singer, 2005, 2007) and may be associated with less depression (Alexander‐Passe, 2006). Additionally, there is burgeoning evidence to suggest that the way children manage emotions (recognise, understand, and regulate) may have particular relevance for the self‐esteem and mental health of children with reading difficulties (Boyes, Leitão, Claessen, Badcock, & Nayton, 2019; Kopelman‐Rubin, Siegel, Weiss, & Kats‐Gold, 2020; Nathan & Rucklidge, 2011; Singer, 2005). However, many of these findings are based on the perspectives of parents and teachers (see e.g., Boyes et al., 2019; Nathan & Rucklidge, 2011). This is problematic given the difficulty in interpreting emotional experience and internalising symptoms (e.g., anxiety) from an outsider perspective. Our aim, therefore, was to explore the socio‐emotional experience of growing up with dyslexia from both child and parent perspectives. In so doing, we aimed to gain a better understanding of self‐esteem and mental health in the context of dyslexia.

2. METHODOLOGY

We analysed the data using Braun and Clarke's reflexive thematic analysis approach (Braun & Clarke, 2006; Braun & Clarke, 2013; Braun & Clarke, 2022) within a critical realism/contextualism framework (Braun & Clarke, 2022). We selected reflexive thematic analysis because it encourages researchers to engage with their data in depth. We felt that depth was what was required to complement previous explorative work which provided a broad brush‐stroke analysis of risk and protective factors for children's mental health concerns (see e.g., Boyes et al., 2019; Leitão et al., 2017). However, rather than a close investigation of mother–child dyadic relationships, an exploration of patterned responses across the data set best suited our aim. For this reason, reflexive thematic analysis rather than a case study approach was preferred, children and mothers were interviewed separately, and dyads were not linked in the analysis or report. Critical realism/contextualism informed our analysis, guiding our acknowledgement of the reality of participants' experiences situated within their socio‐cultural contexts; their perspectives (Braun & Clarke, 2022).

2.1. Researcher positionality

The first author situates her research within the neurodiversity paradigm. Put simply, neurodiversity advocates challenge the medical model of “neurodevelopmental disorders” (such as autism) which conceptualises and labels them as “disorders” characterised by developmental “delays” or “deficits” (DSM‐5; APA, 2013). Instead, proponents of neurodiversity suggest that neurodevelopmental “differences” represent natural human variation, akin to the term biodiversity as it relates to the non‐human world (Baron‐Cohen, 2017), to be accepted/celebrated and not pathology to be “fixed” or “cured” (see e.g., Blume, 1998; Baron‐Cohen, 2017; den Houting, 2019; Pellicano & den Houting, 2021; Singer, 1998, revised version).

Importantly, the neurodiversity paradigm is consistent with a strengths‐based approach and the social model of disability; the latter argues that people are not disabled by factors within themselves (e.g., the fact that someone needs to use a wheelchair) but rather by a society that does not cater for their difference (e.g., a building that does not provide a wheelchair ramp; Oliver, 2013; Pellicano & den Houting, 2021). Taking this perspective implies that research that investigates changes to improve the mental health of children with dyslexia needs to look beyond within‐child factors to consider “person‐environment fit” (Mandy, 2019, p. 1880).

2.2. Materials

We developed two semi‐structured interview protocols, one for children and one for parents. We chose a semi‐structured format to enable a flexible and individualised approach. One of the members of our team is a highly experienced paediatric speech‐language therapist who provided guidance regarding the content and style of the child protocol. Both protocols were piloted on one mother and child (acquaintances of the first author) before the study was advertised. The pilot went well and so the protocol remained unchanged and the data from the pilot was retained in the overall data set. The interview protocols explored child and parent perspectives on emotional experiences (at school and home), coping, support, and included a question to gauge mother (and child) feelings about the transition from primary to secondary school. In addition to the interviews, parents completed a survey which provided background (e.g., demographic) information about their family.

2.3. Participants

In total, 17 children (aged 9–14 years, school grades 3–9, 7 girls and 10 boys) and 17 mothers (1 per child) participated in this study. The study was open to any parent but only mothers volunteered. All but one of the children had a dyslexia diagnosis. This child had grown up outside of Australia and was diagnosed with phonological processing difficulties consistent with a dyslexia diagnosis. The mother identified ongoing reading difficulties and the child was receiving school support for reading. In addition to dyslexia, our sample consisted of nine children with at least one other diagnosis: 5 with attention deficit hyperactivity disorder/attention deficit disorder; three with dysgraphia (writing difficulties); two with dyscalculia (maths difficulties); and one with autism spectrum disorder. Other diagnoses according to mothers were, auditory processing (one child), and processing/working memory difficulties (one child). All children were in mainstream schools, with the majority (12 children) in the final years of primary school. All children, according to their mothers, had received support for their reading difficulties, either at school and/or via external agencies (e.g., private speech‐language therapists). Frequency of school support, according to mothers, ranged from “infrequent” to “daily.” Three children were living in one‐parent homes and the rest lived with both parents. Most children also lived with siblings, some of whom also had dyslexia and/or other learning or attentional difficulties. All but one participant were currently living in Perth, Western Australia.

2.4. Procedure

The study was approved by Curtin University's Human Research Ethics Committee in early 2021 (HRE2021‐0084). After receiving approval, participants were recruited through private speech‐language pathologists, a specialist tutor, social media, and word of mouth. All interviews were conducted between May–December 2021. Inclusion criteria were that the child had a confirmed reading difficulties diagnosis and was aged between 10 and 13 years. We later adjusted the age range to 9–14 years to accommodate interested participants. Informed consent was required from both children and a parent to participate.

All parents were provided with study information sheets (child and parent versions) when they first expressed interest, which detailed the aims and nature of the study. Parents were encouraged to read over the child version with their child before agreeing to take part. This information was reiterated to participants in person before signed consent was obtained. Participants could choose to be interviewed at Curtin University or in their own home. A total of 15 interviews were conducted face‐to‐face in one of these settings and two interviews (one inter‐state interview and one which occurred during a Coronavirus disease (COVID‐19) lockdown, were conducted online. All parent and child interviews were conducted simultaneously after written consent was obtained. The first author interviewed all parents (~45 min) whilst the second author interviewed all children (~20 min). All participants received a $15 gift voucher to thank them for their participation. Parents were offered a list of support services at the conclusion of the interview. After data analysis, a research summary (child and parent versions) was sent to participants and their feedback was invited.

During the 6 months of interviewing the first and second authors maintained reflexive journals and discussed the interview process at regular intervals. This promoted reflexivity and familiarisation with the data (Phase 1 of Braun & Clarke's, 2006, Braun & Clarke, 2013, Braun & Clarke, 2022 approach). Further familiarisation with the data occurred through the transcription process. All interviews were transcribed verbatim by the first author; which involved listening and re‐listening to the audio files, a process which promoted deep engagement with the data. To ensure quality, the written transcripts were checked against the audio recordings by the second author, before being returned to the first author for finalising. To maintain participant confidentiality, all names were replaced with a pseudonym and information which could cumulatively identify an individual was replaced with generic descriptors in the manner described by Braun and Clarke (2013) and/or the pseudonym removed. An a priori decision was made to integrate the child and parent data sets for coding and analysis. The first author coded the data inductively at both a semantic (surface meaning) and latent (underlying meanings) level (Phase 2) and developed an initial set of themes (Phase 3). Input from the whole research team developed the final analysis and report (Phase 4–6).

3. ANALYSIS

Our analysis developed three themes to address the research aim. In each theme children's socio‐emotional experiences were linked to mental health concerns if indicated. The first theme, “Different in a good/bad way” explores self‐esteem, stigma and shame related to “difference” as well as the protective function of parent support and the language of neurodiversity. Theme 2, “Exhausted and overwhelmed,” explores children's school‐based emotions, emotion regulation, and mother's perceptions of meltdowns, school refusal, and homework resistance as signs of exhaustion and overwhelm. Theme 3: “It takes a community: Family–school connections,” explores perceptions of school as a poor “person‐environment fit” (Mandy, 2019, p. 1880) for children with dyslexia, school connectedness, and peer relationships.

Data extracts are included to illustrate each theme. When selecting data extracts we prioritised the child “voice.” Parent data extracts were used to complement, contrast or “flesh out” the child perspective when needed. Editing of the data consisted of adding punctuation and removing some utterances (e.g., um) to improve readability. Further editing, such as including the interviewer comments, removing irrelevant details, and/or joining data extracts from the same participant but from different time‐points are indicated by [] in the report.

3.1. Theme 1: “Different” in a “good/bad” way

Our analysis supports the view that the neurodiversity paradigm may be having a positive influence on the lives of children growing up with dyslexia in contemporary Australian society. Specifically, the language of neurodiversity (difference not deficit) was being used by mothers to promote a positive attitude to the diagnosis. Children echoed this when they discussed their dyslexia during the interviews. Many described their dyslexia as meaning that they had a “different” way of thinking or learning, or that, their brain just works in a “different” way; not necessarily worse or better, just different. For instance, Lara explained how she responded to her diagnosis: “I don't really mind, I thought it's kinda cool I guess, something different, I don't really mind much [] I didn't like think of it as a bad, horrible thing.” In another example, Maisie enthusiastically discussed herself in comparison to a friend, remarking on differences: “I'm different from her because she's good at this and I'm good at that,” but not in a self‐deprecating way.

Previous research has found that receiving a dyslexia diagnosis can be positive for children because it may promote self‐understanding and social support (see e.g., Leitão et al., 2017). Our analysis extends this, by suggesting that receiving a diagnosis can also promote pride, a positive dyslexic identity, and non‐stigmatising language (difference not deficit) to self‐advocate and explain dyslexia to peers. For instance, Michelle described how her daughter's diagnosis empowered her to discuss her difference with others in a positive (not shameful) way: “once she got her diagnosis she's quite proud in telling people that she's got dyslexia yeah she's not shy or embarrassed about it or anything so I think it's good, makes her more confident I think.”

Interestingly, although most children felt positive about their dyslexia diagnosis (described above) and open about disclosing their dyslexia to others, there was a sense that some children preferred to do this on their own terms and/or to people they “trust” (Tilly). This distinction between people who “get it” and those that do not, was put eloquently by Tom:

Most of my friends are understanding, cos I have told them about it, and they are cool with it and they know and they understand so if I am reading in front of them most of my friends get it [] but when it's people that you are not so close with and you don't know the students, they look at you and sometimes they giggle and it's quite embarrassing.

Furthermore, throughout our interviews, children expressed ambivalence regarding their “difference.” At times they expressed “difference” in a positive way, as above, and at other times, children described their dyslexia as making them feel “different” in a bad way. Often in these instances, the “difference” was expressed as being deleterious to self‐esteem (expressed as feeling bad about themselves or feeling “dumb” or “stupid”) and self‐efficacy (expressed as giving up and/or the futility of their efforts) and was prompted by comparing themselves negatively to peers in the school context. For instance:

Jana: It [talking about her dyslexia] makes me feel different in like multiple ways, so say that I was like doing like a writing competition or something and everyone did really good, and I did terrible, it makes me feel bad about myself.

Leo: There's a big difference in what I do at school than all the other kids, it's like me wanting to be like really good at something and then like everyone else in the class is like really good at it except for me, and it's just like well what's the point of me trying that if I can't do it.

Maisie: It just feels weird, it just feels weird and sad because I don't know what's happening in school [later in the conversation] it's bad because all the other kids know what's happening or like they can do it properly, but I can't do it because I have dyslexia yeah and it's just really annoying.

Many of the children, like Tom above, described being at one time or another, “embarrassed” by aspects of their dyslexia (such as poor reading), and many expressed not wanting to “look different,” be “pin‐pointed” or made to “stand out.” It is possible that the children were motivated to hide their difficulties for fear of being teased, as posited by Singer (2005). Alternatively, it may be that children have internalised stigma about being “different” in a bad way; not it seems towards the diagnostic label but rather stigma related to needing support in a culture that values independence and ‘privileges perceived ability’ (Leitão et al., 2017, p. 331). This interpretation is supported by our data. For example, for some children asking teachers for help or using learning accommodations which mark them out as “different” was described as “embarrassing.” For instance:

Issy: If like I had to read something quite fast and a lot of like words that I don't know in it that gets really stressful and I don't really know what to do and I usually like ah probably get embarrassed if I ask someone to help [later in the conversation] I don't really like teachers making it obvious that I need to take a test out of class and it's really annoying [] and then also like I got this C‐pen thing and it, and it always like gives me too much attention, like, I don't really like having that much attention on me.

Our analysis also suggests that fear of having their difficulties exposed to peers can create anticipatory anxiety. For instance, Tom described worrying in the classroom at the prospect of reading aloud in front of peers and having little power to do anything about it:

Each student would stand up and read and then it would go on to the next person for a paragraph each and like as soon as it's coming around to me I'm just like “oh, no”, like everything is going on in my mind and I'm like “oh no this isn't going to be good”, but I just have to get on and do it because there isn't anything else to do.

Similarly, Tess expressed her view that her son's school refusal and lowering self‐worth may be linked to fear of classroom humiliation of this kind:

He had a terrible teacher that really just was awful to him [Int: oh, that's tough for you] yeah, she made him do the alphabet in front of all the classroom, she made him do maths games in front of everyone, I mean she was just awful, and that really affected him and us and then he didn't want to go to school and I think his self‐worth really just sort of dropped.

A particular priority for mothers was to maintain their children's self‐esteem against perceived threats inherent in teaching practices which enable children (and peers) to make negative peer evaluations, such as being made to read aloud in front of peers. A range of parenting strategies was described to promote self‐esteem, such as: using role‐models of successful adults with dyslexia to promote their child's hope in the future; actively engaging their child in a range of extra‐curricular activities in which they experienced success; and challenging children's negative self‐talk. For example, Judy explained how she addressed her daughter's negative self‐talk by focusing “the problem” on environmental (teaching methods) rather than within‐child factors:

So, we'd always said to her the problem is not with you the problem is with us learning how to teach you [] your brain works in a different way, so whenever she would come out with those negative comments, that was our sort of response, no, no, it's not that you're dumb.

3.2. Theme 2: Exhausted and overwhelmed

With few exceptions, the children we interviewed described school as a struggle. Children were keen to point out that dyslexia affected them across the curriculum, even in maths. However, in contrast to previous studies, which highlight children's academic struggles in terms of recurrent academic failure/bad grades and the concomitant association with poor self‐esteem (see e.g., Singer, 2007); our analysis presents “school struggle” in terms of children being overwhelmed by the workload, stressed by the pace of the learning, confused about what's going on, and frustrated and annoyed by the impact that their reading difficulties had on their ability to do their work. For instance, Brodie described how he felt at school:

When everyone else is done I'm still reading so like I gotta catch up, catch up, and by the time they've finished all the text I'm still reading and they've got it all and they're all on the mat and I didn't get to finish all of them so I had to go down to the mat and do something else [and then later after being asked how that feels] it feels a little bit stressed cos like after that we have to do writing about what we've read so when they pass the sheets around I have to do that and so I barely know what to do and like what to write about.

Furthermore, in contrast to stereotypes, our analysis suggests that some children with dyslexia do perform well at school in terms of grades, yet they still struggle. For example, Tom, expressed his struggle in terms of time–pressure and how long he can read before getting tired:

I try to find the key points in the text rather than having to read the whole thing so sometimes I do miss something important because I haven't read through the whole thing and that's really annoying and then I can get the answers wrong and because I can't comprehend the whole thing I need to find certain things before I get too tired or, because it's quite tiring having to read for me.

When speaking to mothers the most common word used to describe how their child's dyslexia affected them was “frustration” whereas children more often referred to “embarrassment,” “stress,” and “annoyance” and feeling confused in the classroom. Most children we spoke to were excited about moving to secondary school, especially when they were moving with friends. However, they expressed concern when their thoughts turned to the expected increase in workload and/or difficulty. For instance:

Simon: I know that all the spelling, reading and things like that are just going to jump up another level at me so it's the one, mostly the only, thing that I'm worried about for like going into 7 [referring to year 7 – the first year of secondary school in most Australian schools].

Given our interest in emotion regulation and links to mental health we asked children what they do at school when they feel negative emotions (e.g., stressed). Generally, children said they “just get on with it” or words to that effect, with some reporting how they use positive self‐talk to motivate themselves: ‘I make myself feel better by saying “you can do it” (Julie).' Arlo provided an insider perspective on how his school struggles affected him:

You can get stressed a lot of the time and then usually get angry if like after school cos you've had like a hard day [] when I get home I'm stressed, it gets like if I'm doing an assignment I get really angry and it gets really difficult [] like if it's like really [emphasis] difficult [Int: yeah] I sometimes cry and get really emotional.

Some mothers explained that their child needs to retreat to their room for a while or ‘switch off’ from school/homework to recover. Many mothers discussed how they support their child to calm down/relax after school by for example, taking them for a swim, running them a bath, or calming them through reassuring words. Children also described a range of ways they deal with their school stress when they get home such as: drawing, music, sport, and outdoor activities. For instance, one child discussed how sport helps him ‘release stress’:

When you are focused on something else, like when you've got the ball at your feet and you are moving, and you're thinking about like what to do with the ball rather than like what you did at school yesterday and I think that can like relax you and when you get home you're fresh and your mind's in a different state again.

From mothers' perspectives, however, many children hold their stress, anxiety, and frustration in during the school‐day and release it in the ‘safety’ of home (Mary) through what several described as a ‘meltdown’ consisting of both externalising (e.g., lashing out) and internalising (e.g., crying, irritability, school refusal) behaviour.

Mary: He comes home quite agitated and stressed and overwhelmed when there's too much, when there's more than a couple of things that he has to remember, do, assignment periods, test periods, those kind of things, and that spills out to home, because of course, that's where he takes out his emotional overwhelming and stress and the safe place to [chuckle] to kinda vent.

Christy remarked how her son's teachers described him as anxious at school, but at home, due to what she perceived to be school‐related “cognitive overload” she said, “he's constantly like pushing his [siblings] buttons, like fully meltdowns.” Similarly, Karen perceived her son's “temper” to be an expression of anxiety: “we're still working on his temper, I suppose, he just gets a little bit, ah, I think it's the anxiety and it comes through in anger.”

Like Christy, many mothers perceived their children's meltdowns and homework resistance to be triggered by mental exhaustion (“cognitive overload” [Christy]; “cooked” [Grace]) due to the extra effort needed to get through a school day when you have dyslexia and the extra workload children with dyslexia often have in comparison to peers (e.g., tutoring homework). For instance:

Michelle: I think it's hard for them because they get homework with school and then her tutoring homework I think sometimes she gets frustrated cos she's got extra work to do, so it's already like their struggling and they find school hard and then they have to do extra work [] it's really, really difficult for them so it's not enjoyable so it's strenuous and hard and you can see them at the end of the day and their brains have been working over‐time and then you have to make them do extra work.

3.3. Theme 3: It takes a community: Family–school connections

Mathew [child participant]: One of the famous quotes I've heard is if you judge a fish on its ability to climb a tree it will think it's whole life that it's bad and it's failed in life but if you judge a fish on how well it can swim it will think it's whole life on how it can be good.

It seems likely that Mathew has heard this quote from a parent or teacher who used it to support his self‐esteem. It suggests that he perceives school to be an environment that does not allow him to show his strengths; that at school he is like a fish trying to climb a tree. Many mothers perceived school to be an environment that highlighted their child's difficulties and minimised their strengths, and some linked this poor “person‐environment fit” (Mandy, 2019, p. 1880) to their child's mental health concerns. For instance:

Karen: The anxiety that comes about for kids like [child's name] they just sit there, and they know that the expectation is that you can read it, but you can't, and then nobody's giving you the opportunity to excel in different ways, it's still very focused on, you know your As and Bs.

Many mothers related their struggle for school to recognise and accommodate their child's learning differences and concern for children whose families did not have the resources (time, money, skills) to advocate and support them. Relatedly, some mothers speculated that their child's mental health may worsen if they were not putting in extra effort to support and advocate for their child at school. For instance:

Mary: [referring to the homework support she provides her son] I often wonder what would happen if I didn't, if I just let him, left him to his own devices [] I think he would be struggling, I think we'd see it, I think we'd see him acting out in other ways now if we weren't supporting him.

One mother, Kate, referred to school support as “paramount” but also noted that her family were fortunate in this regard:

The school have been amazing, absolutely amazing, and if we could almost get that level of support for every kid, that would just be fantastic, because what I've learned from other parents is there is not that level of support for every kid.

Our research suggests that perceptions of a positive family–school relationship were an important protective factor for the mental health of children and their mothers). Having teachers (and principals) that were caring, responsive to parent's suggestions, and interested to learn more about how best to support a child with dyslexia were highly valued. For many, these attitudes and personality factors seemed to be more important than how much teachers already knew about dyslexia. For instance:

Brodie: I've got the principal, she helps me, like when she comes to the class, she like checks on me to see how I'm going in class and at school [] she' s helping a lot with me [Int: and so how do you feel about that?] I feel really appreciated about that.

In terms of peer relationships, our analysis suggests fewer incidents of overt and severe bullying relative to past research (see e.g., Singer, 2005). Across our interviews, peers were more likely to be described as friends rather than foe by both children and their mothers. Nevertheless, several children described incidents of being laughed at and/or teased for their dyslexia‐related challenges (e.g., poor reading, difficulty following instructions) and there was a sense that parents and teachers were not always aware of these occurrences. Other mothers were well‐aware of their child's peer difficulties. For instance, Trudy described her child as experiencing a lot of school‐related anxiety: “A lot of anxiety with school lots of anxiety [] you can tell if something's bothering him cos he starts getting really like clingy, upset, and doesn't want to go to school and gets really disgruntled easily.” Later in the conversation, she discussed links between his struggles and peer difficulties: “I think the friendship thing, he does struggle a bit, and I think that affects him a bit, just cos, you know, kids are kids, they just can be cruel.”

Our analysis suggests that friendships were particularly important for the well‐being of children with dyslexia. Many children (and parents) credited friends as providing an enormous amount of emotional and practical support at school, and when this occurred, parents seemed to worry less about their children. For instance:

Kate: [describing her daughter] She's got this gorgeous friendship group [] lovely, lovely little friends, it is wonderful [] so if she sees friends struggling she says ‘oh the answer to that is blah blah blah because of x, y, z’ and then she's got favours in the bag so that when she needs help, she does not feel bad saying ‘I don't get that, how do I do that?’, so, they kind of help each other, they work together.

This kind of child‐instigated reciprocal support did not seem to be “embarrassing” to children. Possibly because it is less stigmatising for children with dyslexia than seeking teacher support; highlights that all children have strengths and challenges; and reflects children's empowerment to choose support from those they trust. This may explain why moving to secondary school with friends seemed to counter child and parent concerns about the transition and contribute to children's excitement about the new learning environment.

4. CONCLUDING COMMENTS

Our aim was to explore the socio‐emotional experience of growing up with dyslexia from both child and parent perspectives. In so doing, we aimed to gain a better understanding of self‐esteem and mental health in the context of dyslexia. We took a neurodiversity lens to our analysis and prioritised the voices of children.

Consistent with previous research (Leitão et al., 2017; Riddick, 2010; Singer, 2005, 2007), our analysis suggests that children with dyslexia face perceived threats to their self‐esteem within the school environment and many feel stressed, confused, annoyed, and embarrassed by their learning challenges. Our analysis is also consistent with previous findings regarding the crucial role of parents in supporting their child's self‐esteem (see e.g., Leitão et al., 2017; Singer, 2007; Terras et al., 2009) and emotion regulation (Singer, 2005). We extend these previous findings by highlighting nuances (what's helpful or not helpful) regarding children's relationships with parents, friends, and teachers. Further, this study highlighted the particular importance of perceptions of parent‐school partnership, school‐connectedness, and friendship for the well‐being of children with dyslexia. It is intuitive that school‐connectedness, a concept that describes perceptions of being treated fairly, supported, and included at school (Libbey, 2004; Millings, Buck, Montgomery, Spears, & Stallard, 2012) may be hindered among groups whose learning needs are somewhat different from the norm. Yet, this factor is relatively under‐explored in the dyslexia field. Future researchers are encouraged to investigate friendship, school‐connectedness (parent and child perceptions) and parent support in links between dyslexia/reading difficulties and mental health (anxiety and depression).

Previous researchers have found that receiving a dyslexia diagnosis can be positive for children's self‐esteem possibly because it promotes self‐understanding (Leitão et al., 2017). Our analysis extends this, by suggesting that receiving the diagnosis (couched in the language of neurodiversity) can promote pride, a positive dyslexic “identity,” and empower children to self‐advocate. This suggests that the neurodiversity paradigm which promotes “acceptance” of neurological differences such as autism and dyslexia (Pellicano & den Houting, 2021) may be having a positive influence on children's well‐being. It also sign‐posts a possible lessening of social stigma regarding learning difficulties such as dyslexia. Nevertheless, in our study children expressed ambivalence towards their “difference.” Specifically, many expressed a desire to hide their difficulties out of shame (expressed as “embarrassment”). Furthermore, our analysis suggests that children's fear of having their difficulties exposed may prompt anticipatory anxiety and/or school refusal. These themes are under‐explored in the dyslexia field and warrant further investigation.

In terms of mental health, children discussed having “worries” and experiencing school‐related stress whereas many mothers disclosed that their children have (or had) experienced anxiety related to their school struggles. In some cases, the child's anxiety had been identified by school but in most cases, it was noticed by parents through behaviours such as clinginess, short temper, and school refusal. This is consistent with the results of reviews of quantitative studies which find that children with reading difficulties, relative to typical readers, are at elevated risk for anxiety (see e.g., Francis et al., 2019; Maughan & Carroll, 2006). It is also consistent with previous qualitative work describing school refusal among children with dyslexia (Riddick, 2010). Our analysis, however, offers a plausible explanation for the parent‐reported externalising behaviour prevalent in much past research (see e.g., Russell et al., 2015). Specifically, that externalising behaviour may be an expression of anxiety, exhaustion, or the build‐up of stress and frustration that has occurred through the school day.

The possibility of stress and/or exhaustion as a mechanism for children's mental health concerns is relatively unexplored in the dyslexia literature. However, these findings are consistent with recent research in the autism field suggesting a link between elevated levels of anxiety (and depression) among autistic adults because of the stress and exhaustion of trying to “mask” their differences and “fit in” to an unaccommodating “neurotypical” world (see e.g., Higgins, Arnold, Weise, Pellicano, & Trollor, 2021; Hull et al., 2021; Phung, Penner, Pirlot, & Welch, 2021; Raymaker et al., 2020). Certainly, many mothers (and some children) in our study expressed a perception of school as a mismatch for their children; that they, as Mathew put it, are fish being asked to climb trees. There were several accounts of children having reached and/or over‐extended their energy resources, particularly when it came to “meltdowns,” homework resistance, and Tom's description of being under pressure to finish work because reading is “tiring” for him.

In terms of emotion management, the children we interviewed described a range of out‐of‐school strategies to deal with school stress and difficult emotions. Furthermore, many had mothers who were supporting them with their emotions once they got home. Nevertheless, our analysis is consistent with Singer's finding that children with dyslexia may be “concealing” their emotions at school (Singer, 2005, p. 411). However, our analysis extends this to suggest that children were concealing their emotions at school and then releasing (through meltdowns) or regulating emotions that build through the school day once they got home. The prospect of children suppressing their emotions to get through the school day is concerning. There is robust evidence that the habitual use of this emotion regulation strategy (emotion suppression) is linked to anxiety and depression across the lifespan (Hu et al., 2014; Schäfer, Naumann, Holmes, Tuschen‐Caffier, & Samson, 2016); peer relationship difficulties in adolescence (Chervonsky & Hunt, 2018, 2019); and may impair memory (which may in turn hinder a child's cognitive resources for learning; Gross, 2002). Future researchers are encouraged to investigate emotion suppression and stress/exhaustion as possible mechanisms for mental health concerns among school‐aged children with dyslexia.

A limitation of our study was that most children we interviewed were aged 10–12 and in the latter years of primary school. Our analysis suggests that adolescents may have different concerns to younger children (e.g., more concern about impression management and “hiding” their reading difficulties from peers) which requires further analysis. Additionally, the findings of our study are limited by the fact that many of the children interviewed had co‐morbid disorders which may contribute to the socio‐emotional difficulties described. Furthermore, the verbal format of the interview protocol may have excluded children who have difficulty expressing their thoughts and feelings through words. Future researchers are encouraged to offer a variety of formats (e.g., drawing) to elicit children's responses. Nevertheless, taking a neurodiversity perspective and harnessing both child and mothers' perspectives provided an opportunity to frame children's school struggles as a case of poor “person‐environment fit” and suggest supports for mental health that focus on changing children's environment rather than within‐child factors (Mandy, 2019, p. 1880). Specifically, our analysis suggests that teaching practices which: promote peer support in classrooms (such as by seating friends together); regular emotion regulation breaks during the school day; opportunities for all children to showcase their strengths; and individualised approaches to academic support which respect children's concerns about exposure and other needs (such as reduced homework) are supporting children's mental health.

In conclusion, our analysis highlighted children's ambivalence toward their “difference” and their experience of dyslexia‐related school struggles as well as mothers' concerns regarding the self‐esteem and mental health of their children. Children who have fewer supports (parent, friend, and school) in place may be at particular risk of experiencing poor self‐esteem and mental health. Importantly, our study highlighted links between mental health concerns and: stigma, shame, and self‐esteem (Theme 1) and emotion regulation, stress, and exhaustion (Theme 2) to be investigated by future researchers. Our study also contains practical recommendations for parents, teachers and health professionals who work with children with dyslexia.

FUNDING INFORMATION

Adrienne Wilmot is supported by an Australian Government Research Training Program Scholarship. Mark Boyes is supported by the National Health and Medical Research Council, Australia (Investigator Grant 1173043). Hannah Pizzey was supported by a Curtin Faculty of Health Sciences Summer Scholarship.

CONFLICT OF INTEREST

The authors declare that they have no potential conflict of interest.

ETHICS STATEMENT

Curtin University Human Research Ethics Committee (HREC) approved this study (HRE2021‐0084).

Wilmot, A. , Pizzey, H. , Leitão, S. , Hasking, P. , & Boyes, M. (2023). Growing up with dyslexia: Child and parent perspectives on school struggles, self‐esteem, and mental health. Dyslexia, 29(1), 40–54. 10.1002/dys.1729

DATA AVAILABILITY STATEMENT

The data that support the findings of this study are available from the corresponding author upon reasonable request.