‘I just rolled up my sleeves’: Mothers’ perspectives on raising girls on the autism spectrum

Abstract

Little previous research has elucidated the everyday experiences of autistic girls or their families. This study used qualitative in-depth interviews to explore mothers’ experiences of the diagnosis, presentation and impact of caring for a daughter with autism. Nineteen women with autistic daughters (aged between 7 and 18) participated in the research, which took place in Ireland. Thematic analysis identified six themes: What’s Going On?; Road to Acceptance; Beyond the Stigma of Autism; Autism: Like a Girl; Mothers Holding It All Together; and Mothers Roll Up Their Sleeves. The analysis suggests that the path of autism in girls in Ireland is marked by diagnostic delays, social stigma, interpersonal difficulties, mental health comorbidities and parental stress. However, these challenges were offset by the resilience of mothers, buttressed by pride in their daughters and support from other women. Results will inform the development of policy and practice that is sensitive to the lived realities of autistic girls and their families.

Lay abstract

Autism in boys has been well researched but very little is known about the everyday experiences of autistic girls or their families. Mothers’ views and insights can be very helpful in increasing knowledge around the unique demands of raising a daughter with autism. This study conducted interviews with Irish mothers to examine their own experiences regarding (a) getting an autism diagnosis for their daughter, (b) their daughters’ personal characteristics and (c) the impact of caring for a daughter with autism. The study suggests that the route to an autism diagnosis for girls in Ireland is made more difficult by delays and missed diagnoses, and often followed by inadequate supports. Mothers described autistic girls as presenting with social challenges and mental health difficulties. Many mothers experienced judgement from other parents and family members, acute stress and mental health struggles. However, these challenges were offset by mothers’ resilience, pride in their daughters and support from other women. The findings of this study highlight the importance of specific support for autistic girls and their families.

Keywords

autism diagnosis family functioning and support qualitative research social stigma women and girls

Autism spectrum disorder (autism)¹ prevalence in children is estimated at 1%–2%, with a 3:1 male-to-female ratio (Loomes et al., 2017). There is increasing recognition that autistic females are under-identified in both research and clinical contexts (Gould, 2017; Kreiser & White, 2014; Rivet & Matson, 2011; Watkins et al., 2014). Recent evidence suggests autism may present distinct challenges for females, particularly in childhood and adolescence (Cridland et al., 2014; Milner et al., 2019; Navot et al., 2017). Mothers of children with autism shoulder the majority of caring responsibilities within the family (Nealy et al., 2012). This affords them unique insight into the everyday experiences of autistic girls, and also means that mothers themselves may have socio-emotional needs that require support. This study uses a qualitative interview approach to explore the first-hand perspective of mothers on the diagnosis, support and impact of autism in girls.

Autism in girls

While the gender disparity in autism diagnosis is well-documented, researchers disagree on the reasons behind these patterns. Some attribute it to an intrinsic aetiological connection between autism and maleness, later onset of difficulties in females or females’ lower debilitation by autism symptoms (Lai et al., 2015). Others argue that diagnostic instruments are biased due to under-recognition of female phenotypic traits (Begeer et al., 2013; Gould & Ashton-Smith, 2011; Kreiser & White, 2014; Rynkiewicz et al., 2016; Tierney & Burns, 2017). Research shows that autism presentation deviates across gender: females show better socio-emotional reciprocity, higher emotionality scores, less impaired non-verbal communication and more typical restricted interests (Dean et al., 2017; Head et al., 2014; Hiller et al., 2016; Ormond et al., 2018; Rynkiewicz et al., 2016; Sutherland et al., 2017). The same core difficulties may be expressed differently in males and females, with males’ tendency towards externalised behaviours rendering them more identifiable (Mandy et al., 2012). In addition, while some studies have found both males and females engage in compensation strategies (Hull et al., 2017; Livingston et al., 2020), other research finds women and girls engage in more ‘camouflaging’ of their social communication difficulties (Hull et al., 2020; Lai et al., 2017). Due to some or all these factors, females are less likely to receive a diagnosis than males with equivalent symptom severity (Dworzynski et al., 2012). Delayed or missed diagnosis can negatively affect girls’ well-being (Rivet & Matson, 2011; Solomon et al., 2012).

Alongside the core difficulties of autism, females with autism may also experience comorbid mental health challenges. Young people with autism are at increased risk of suicidality, with depression and bullying major risk factors (Gadow et al., 2012; Mayes et al., 2013). Risk factors specific to autistic girls have not been a major focus of empirical attention. However, Solomon et al. (2012) found higher internalising problems and depression in autistic girls than female and male controls, with 26% of autistic girls in the clinical range. Other studies confirm adolescence is a particularly challenging time for autistic girls, with lower self-worth, poorer quality of life and higher risk of clinical psychopathology relative to same-sex controls (Jamison & Schuttler, 2015).

Autistic girls may also differ from boys in their social experiences. In most Western cultures, gendered role expectations place greater pressure on women to engage in social monitoring and conformity (Suh et al., 2004). Although autistic girls may desire friendships, social experiences can be challenging and girls may compensate for communication defects using peer imitation to avoid rejection (Tierney et al., 2016). Sedgewick et al. (2019) demonstrate that autistic girls have subjectively different friendships than non-autistic girls and struggle significantly more with conflict and its resolution. Furthermore, the school environment is particularly fraught for autistic girls, where peer isolation and bullying can have a detrimental impact on mental health (Cook et al., 2018; Honeybourne, 2015; Sedgewick et al., 2018).

Thus, due to female-specific social pressures, mental health risks and diagnostic barriers, autistic girls may face qualitatively different challenges than autistic boys. This is confirmed by research with adult autistic women, who self-report frequent experiences of diagnostic delays or errors, desire for but difficulty forming relationships, unmet mental health needs and the tailoring of services to males (Bargiela et al., 2016; Milner et al., 2019; Tint & Weiss, 2018). While less research illuminates the lived experiences of female autistic children, Milner et al.’s (2019) study also included seven adolescents and four mothers of autistic girls, who echoed the autistic women’s concerns about social marginalisation and inadequate supports.

Parental experiences

The home environment is a crucial influence on the well-being of girls with autism (Bronfenbrenner & Morris, 2006). Understanding the range of parental responses to a child’s autism is vital to develop targeted strategies to support autistic children and their families (Lord et al., 2020). Parental responses can depend on many factors, including the severity of challenging behaviours, access to services, socio-economic status and lone parenting (Bonis, 2016; Bromley et al., 2004; Stuart & McGrew, 2009). Social support and adaptive coping can ameliorate the challenges of parenting children with autism (Hastings & Johnson, 2001), while resilience to daily stress buffers intensified psychopathology risks in mothers (Bitsika et al., 2013).

The task of parenting girls with autism may entail unique challenges due to the aforementioned female-specific socio-emotional difficulties. In addition, the higher risk of delayed diagnosis (Begeer et al., 2013) may increase parental stress and reduce access to support (Crane et al., 2016; Siklos & Kerns, 2006; Young et al., 2018). Research indeed finds that parents of autistic girls have higher stress levels and receive less support than parents of autistic boys (Zamora et al., 2014). These impacts seem to be concentrated among mothers, who bear the burden of caring responsibility (Nealy et al., 2012) and report higher psychopathology and marital dissatisfaction than fathers (Bitsika et al., 2013; Gau et al., 2012; Higgins et al., 2005).

Research approach

Qualitative research designs are uniquely suited to enlighten the lived experiences of an under-researched population (Braun & Clarke, 2019; Southam-Gerow & Dorsey, 2014). Qualitative research with adult autistic women has produced vital insights into the first-hand experience of living with autism, for instance, illuminating the strategies and stresses of ‘camouflaging’ one’s difficulties (Bargiela et al., 2016; Livingston et al., 2019; Tint & Weiss, 2018). To understand the experiences of autism in females in childhood, mothers are a key informant, as they are most likely to be autistic children’s primary carer (DePape & Lindsay, 2015; Ellison et al., 2009).Very limited research has explored mothers’ experiences of parenting young autistic girls. Cridland et al. (2014) interviewed five mothers of autistic adolescents, who suggested female-specific concerns included social difficulties, puberty and vulnerability to sexual exploitation. The four mothers who participated in Milner et al.’s (2019) study reported frequent misdiagnosis or delayed diagnosis, with consequent delays in service access. While Milner et al.’s (2019) participants described diagnosis as stimulating relief, the 11 mothers interviewed by Navot et al. (2017) discuss complex feelings of guilt induced by late diagnosis.

A key aim of qualitative research is to illuminate the contextual specificity of emotion and behaviour. Experiences of mothering neurodiverse children differ greatly across cultures and contexts (O’Connor, 2019; Singh, 2004). However, most previous autism research emanates from the United Kingdom or North America. One heretofore under-researched context is the Republic of Ireland. The long-standing under-resourcing of Irish disability and mental health services means the route to an autism diagnosis can be long and challenging process, which impedes timely access to early interventions (O’Connor & McNicholas, 2020; Rabbitte et al., 2017) and increases parental worries of stigmatising implications (Finnegan et al., 2014). It is estimated that up to 87% of Irish parents experience ‘significant distress’ when pursuing an autism diagnosis (Keenan et al., 2010). No previous research has examined how autism in girls is experienced within Irish homes.

The present study adopted a phenomenological approach to explore the experiences of mothers of autistic girls in Ireland. Phenomenology focuses the analytic lens on subjective experiences within participants’ own socio-cultural environments (Langdridge, 2007). Semi-structured in-depth interviews explored mothers’ experiences and perceptions regarding (a) diagnostic processes, (b) presentation of autism in girls and (c) impacts of raising a daughter with autism. Through thematic analysis of the interview data, the study sought to identify common patterns in mothers’ experiences, as well as salient points of divergence.

Method

Participants

After one pilot interview, interviews were conducted with 19 Irish mothers of autistic girls² aged between 7 and 18 years (M = 11.71, SD = 3.25). Participants ranged in age from 27 to 59 years. The purposive sample was recruited by distributing an advert calling for participants through social media networks of autism support and advocacy organisations. Interested participants contacted the researcher and gave verbal confirmation that their daughter had received a professional diagnosis of autism. All participants were their daughter’s primary caregiver with a minority (n = 4) were also employed outside the home. Participants lived in a variety of urban and rural locations across Ireland, with all but three cohabiting with their daughter’s father. Most (n = 17) had more than one child, with nine reporting multiple autistic children. The age range of girls at diagnosis was 2–14 years (M = 7.80, SD = 2.90). Regarding the girls’ educational settings, three attended special units, two were home-schooled and the remainder attended mainstream education.

Procedure

Twelve interviews were conducted face-to-face, at locations that suited participants, while four were interviewed by videocall and three by phone. Participants completed consent forms and demographic questionnaires either by email or in person before the interview. Semi-structured interviews followed a guide covering four main topics: diagnosis and services, daughters’ experiences, diagnosis disclosure and impact of autism (see Supplemental Material). A pilot interview resulted in slight revisions to question wording and order. Interviews lasted between 55 and 116 min (M = 81.05, SD = 16.67), and followed an in-depth flexible style, guiding participants in the exploration of their individual experiences. Interviews were audio recorded and transcribed verbatim.

Ethics

Ethical approval was granted by the School of Psychology, University College Dublin. All participants gave informed consent to participate. The study was informed by recommendations for ethical qualitative research with autistic families (Cridland et al., 2015). Participants were not personally known to the interviewer. The interviewer was a mother of an autistic girl, allowing enhanced contextual understanding and empathy, which can strengthen the process and findings (Braun & Clarke, 2006; Davis, 1996). Field notes regarding the context and the interaction were taken and discussed by the research team to enable reflexive critique of data gathering and interpretation, and to identify and avert bias (Greene, 2014).

Data analysis

In accordance with Yardley’s (2000) principles for quality research, the analytic approach prioritised contextual sensitivity, rigorous application and transparency of steps taken, conceptual coherence and relevance to practice and/or policy. Interview transcripts were imported into qualitative software NVivo 12 (QSR International, 2018) for analysis. To provide a rich and data-driven narrative, an inductive thematic analysis was applied (Braun & Clarke, 2006). Analysis took a phenomenological approach that prioritised capturing the subjective meanings that participants expressed over determining the factual accuracy of their reports. An initial coding frame was generated through repeated reading of the data and systematically applied to conceptually meaningful segments of interviews. Data-derived (semantic) codes were developed into themes and subthemes that captured more latent patterns in the data. The thematic structure was refined iteratively, with repeated reversion to the data and visual charting (see Figure 1).

Figure 1.

Thematic map of six themes and subthemes derived from 19 data transcripts.

To ensure consistency of coding (O’Connor & Joffe, 2020), two independent coders applied the coding frame to quotes from one full transcript. Inconsistent codes were revised, and the final inter-coder reliability analysis reached a 77% match of quotes. Analytic credibility was also promoted through maintenance of an audit trail that transparently documented all decisions and procedures, writing reflexive field notes, using illustrative quotations to achieve ‘thick description’ and attention to conflicting or minority ideas within the data (Palinkas, 2014).

Results

Thematic analysis identified six themes, comprising 16 subthemes (Figure 1). Themes illuminated mothers’ perspectives on the diagnosis, presentation and impact of caring for a daughter with autism.

Theme 1: what’s going on?

This theme captured mothers’ experiences of a confusing and difficult path to acquiring a diagnosis, and subsequent challenges in accessing supports for their daughters.

Subtheme 1.1: challenges to securing a diagnosis

All mothers spoke about initial concerns they had regarding their daughters’ development and feeling that ‘something’s wrong’. Participants recounted early difficulties with sleep, eating or behaviour, and/or delays in speech, physical, sensory or emotional development. Almost all questioned their parenting, wondering ‘are we bad parents?’ or ‘is this normal?’. First-time mothers felt particularly under-equipped to identify and understand developmental issues.

All girls had one or more of a range of co-occurring psychological or physical health conditions, usually recognised prior to an autism diagnosis. Many mothers felt these comorbidities may have initially overshadowed autism symptoms, resulting in delayed diagnosis:

She had her down with having anxiety, and she diagnosed dysgraphia . . . ADHD, everything bar the word autism . . . you get answers, but they’re not the right ones. (P1)

Subtheme 1.2: diagnostic and service difficulties

Most mothers were unhappy with the assessment process they had experienced. Over half expressed anger that clinicians failed to initially recognise autism despite there being ‘a lot going on . . . so many red flags’ (P3). Cases of delayed or mis-diagnoses caused regret of lost access to early interventions:

If we had her diagnosis since she was 4 or 5, then she wouldn’t have had the horrendous, the effect on her mentally . . . like she’s damaged. (P12)

Once diagnosed, mothers hoped autism services, such as psychology or occupational therapy, would follow. However, almost all felt let down by lengthy waiting lists. Some felt ‘abandoned’ or ‘referred on’ by professionals, which brought intense feelings of anger, isolation and confusion:

They can’t just walk out of your house and leave you there to it . . . that’s what they did to us. What do we do now? . . . No idea. And that is evil. (P4)

Many felt the services offered by their clinical teams were inappropriate for their daughter. Some attributed this unsuitability to a male bias in service design or delivery, for instance, use of ‘very male toys, dinosaurs’. Others with adolescent daughters felt the services were more suited towards younger children, ‘it’s one size fits all, and that just didn’t fit’ (P3). One mother who also had autistic sons pointed out:

The boys could have a social skills group every week for the rest of their life . . . The girls don’t have that, and that’s a bit of a disadvantage. (P9)

Theme 2: road to acceptance

This theme elaborated mothers’ emotional journey following delivery of a diagnosis.

Subtheme 2.1: perceptions about the diagnosis

Most mothers remembered receipt of the autism diagnosis as a difficult event:

I just gasped. I couldn’t breathe. It was like the worst words you could say to me . . . because I’d been there before. (P5)

For a few the diagnosis was ‘absolutely zero surprise’ (P7). However, half described their initial reaction as ‘surprised’ or ‘shocked’, with some feeling overwhelmed by the unexpected diagnosis and its implications:

What’s going on? What’s autism? Why is this the first time we heard about it? (P11)

Four mothers recounted strong feelings of loss and ‘grieving’, while others recalled disbelief and denial:

I want proof. I want a blood test . . . I can’t. I didn’t see it. (P16)

While the diagnostic process was emotionally likened to ‘a roller coaster’ (P17), many mothers ultimately saw the diagnosis as ‘to be embraced’ (P17). The diagnosis finally brought relief from uncertainty, validation of parental concerns and release from self-blame:

What’s worse than knowing, is not knowing. Because the default position to not knowing is you are going to blame yourself. (P11)

Subtheme 2.2: diagnosis leads to supports

Not all service experiences were negative. For some, a diagnosis facilitated welcome access to interventions such as speech or occupational therapy or parenting courses. Five mothers of girls diagnosed young were very pleased with the supports they received:

She would be a very different child now if she didn’t have all that early intervention. (P7)

For most, diagnosis was a critical gateway to the school supports necessary for a positive learning environment for their daughter. These concrete supports bolstered a sense that the diagnosis was a positive step for their daughter:

That’s kind of where the acceptance came in . . . getting her into the school, getting help, seeing the progression. (P3)

Subtheme 2.3: disclosure of diagnosis

Mothers varied in their approach to disclosing the diagnosis to their daughter. Some felt knowledge of the diagnosis would promote self-understanding and self-esteem, by conveying that she was ‘just different, not less’ (P11). Others were reluctant to inform their daughter due to concerns about her comprehension or reaction. Mothers who did disclose the diagnosis reported diverse emotional responses, from being ‘so happy with a diagnosis’ (P14), to ambivalence that ‘it doesn’t make any difference to me, I’m still me’ (P14). Three girls, all of whom had been diagnosed after age 9, resisted and sought to conceal their diagnosis:

She does not want anybody to know about this, whatsoever. (P10)

Mothers generally found disclosing the diagnosis to family and friends challenging. Several felt the validity of the diagnosis was dismissed, with blame levelled at their parenting choices:

‘Ah, there’s nothing wrong with her. You keep labelling’. I didn’t talk to them for several weeks. (P15)

Theme 3: beyond the stigma of autism

This third theme captured mothers’ perceptions of social attitudes and their impact on the family.

Subtheme 3.1: autism, labels and stereotypes

Almost all participants alluded to the cultural stigma surrounding an autism diagnosis. Some related fear of the unwelcome ‘label’ that had entered their lives:

It terrified the life out of me . . . I have a daughter like that and the stigma and all the rest of it. (P18)

Most mothers believed autism diagnoses exposed their daughter to stereotypes and a positioning of them ‘as so different’ (P19). Five mothers described distressing exclusions from social events. Half felt the diagnosis impeded girls’ social assimilation:

I wanted her to make friends or to mix, without a label. (P8)

The stereotypes attached to specific terminology influenced mothers’ use of language. Some preferred the term ‘Asperger’s’ due to concern the word ‘autism’ would trigger ungrounded expectations of ‘the extreme autism’ (P16).

Subtheme 3.2: feeling judged and misunderstood

Notwithstanding concern about the stigma attached to the autism label, mothers also found the relative ‘invisibility’ of autism led to misjudgement of themselves and their daughter. Mothers sometimes felt embarrassed by their daughters’ challenging or taboo behaviours and their own difficulties managing them. While some mothers resolved to ‘let her be who she wants to be’ (P16), others were distressed by observers’ negative reactions and unsolicited parenting advice. Some mothers emphasised their daughter’s awareness of other people’s stares and comments, which contributed to their marginalisation:

She doesn’t really fit in there. And she knows. So that’s really sad. (P9)

Mothers eventually put up ‘a wall’ against persistent judgement, with some estranging themselves from specific individuals as a result:

I lost a daughter over it and she has no contact with me at all . . . that’s fine. (P2)

We’ve been excluded so I just prefer to stay away. (P1)

Subtheme 3.3: autistic, proud and inherited

Despite the stigma that was almost universally experienced, numerous families constructed a positive social identity around the autism diagnosis. Six mothers had received or considered a diagnosis of autism for themselves, due to perceived similarity to their daughters:

I said, you’re describing me when you tell me my daughter’s autistic and you tell me these traits. (P6)

The 19 families included 17 siblings with diagnosed or suspected autism, and many extended family members also on the spectrum. This heritability promoted strong familial identity and bonds:

So all my uncles, all of their sons, and all of their grandsons, the majority of them has autism. (P9)

Many mothers emphasised positive aspects of autism when communicating with their children. This ‘autistic pride’ was particularly evident in families with multiple diagnoses:

We’ve always spoke highly of autism, that it’s okay to be different. That we’re all quirky in different ways. (P5)

She is thrilled with herself . . . she’s a fourth generation Aspie. (P7)

Theme 4: autism: like a girl

This theme represented mothers’ perspectives on the distinctive features of autism in girls.

Subtheme 4.1: girls on the spectrum are different

Several participants believed that girls’ autism presentations were less ‘obvious’ than boys, in whom they could ‘spot it a mile away’ (P5). Most mothers described girls using ‘masking’ techniques, self-monitoring, and ‘mimicking’ their peers to ‘fit in’. This social labour carried emotional consequences:

She comes home from school and she’s exhausted . . . it’s the whole keeping up with putting this façade on. (P14)

Many autistic girls did not comply with conventional gender expectations in dress or interests. Four children identified as a gender category other than female. Mothers feared this would compound difficulties with social assimilation:

Just so many challenges ahead . . . it’s not going away. (P16)

Puberty was experienced as challenging due to sensory and emotional difficulties with body maturation, menstruation and personal hygiene:

Like monthly time, to get her to change her pad. ‘No, I like the feel of it’ . . . She would just dump it on the ground. (P2)

She won’t wear a bra. Little bit embarrassing, you know? (P16)

Many mothers described their daughters as vulnerable due to their innocence and naivety. For some safety concerns were heightened by perceptions that girls were a ‘flight risk’ or overfamiliar with strangers:

It only takes one person and she’s gone. That’s the big worry. (P18)

Subtheme 4.2: social difficulties for autistic girls

All mothers conceded that their daughters were struggling socially due to insensitivity to social norms. While older girls were often described as shy or ‘so quiet’ (P8), mothers of younger girls spoke about their daughter’s desire for control or social inappropriateness:

She didn’t know social cues . . . she’d be right up in your face. (P14)

Ten mothers stated that their daughters had no friends and were never invited to social events. While mothers believed their daughters desired friendships, they were often ‘excluded and it escalated as the years went on’ (P12). This isolation was aggravated by girls’ withdrawal due to social anxiety:

She doesn’t leave the house. She doesn’t have friends . . . she’ll become more isolated as she gets older because people are less forgiving. (P9)

Several mothers described how their daughters maintained one very close friendship, whose rupture could leave them ‘distraught’ (P13). Only three girls had autistic same-sex acquaintances. Half had atypical friendships, preferring the company of boys or younger children. Many had experiences of bullying, which was often not sensitively handled by schools. Numerous mothers described severe psychological consequences of bullying:

It was probably the culmination of everything, but the bullying was I think was the catalyst for the breakdown. The trigger that sent her into freefall. (P12)

Subtheme 4.3: girls and psychopathology

All participants described how their daughter experienced emotional or behavioural challenges such as low self-esteem or sensory difficulties with food. Notably, every mother described their daughter experiencing debilitating anxiety. This typically manifested in compulsive behaviours like counting, hoarding, and tics, with a few instances of panic attacks and paranoid delusions. Mothers wondered whether anxiety was an independent condition or a feature of autism itself:

Is the autism causing this anxiety or is it not? So she’s constantly thinking, I’m dying. (P5)

Depression was experienced by five out of the 10 girls who were diagnosed later than age nine, and just one girl who had received an earlier diagnosis. Depressive episodes were described in terms of sadness, ‘crying, solidly’, exhaustion and withdrawal from the family. Almost half of the girls engaged in a range of self-injurious behaviours, including cutting and strangulation. Four mothers of girls diagnosed after age nine disclosed their daughters’ suicidal ideation or attempts. For some, such events were the catalyst for seeking help that led to an autism diagnosis. Self-harm usually followed a stressful event when ‘the wheels came off’, ‘it blew up’ or ‘the whole thing exploded’. Precipitating stressors included peer conflict, school transitions or exams. Mothers reacted to self-harm events with shock and despair:

I thought I was going to vomit . . . harming herself, next step suicide? (P5)

Most girls with mental health difficulties were undergoing pharmaceutical or psychotherapeutic treatment, with varied perceived efficacy.

Theme 5: mothers holding it all together

This theme described how mothers experienced and managed the stress imposed by their daughters’ challenges.

Subtheme 5.1: burden of family functioning

Mothers described autism as all-consuming, meaning ‘every minute of every day was taken up’ (P12). Family diet, sleep, schedules and physical environments were dictated by routines tailored to their daughters’ needs. Several mothers detailed the demand for constant vigilance to keep family members safe from aggressive outbursts involving ‘screaming, crying or hitting’ (P15). The unpredictability of such ‘meltdowns’ was a source of severe tension:

Unpredictable. You don’t know when it’s gonna happen. And God help you if you’re in the way. (P2)

The stress involved in leaving the home meant many mothers became socially isolated. Single mothers particularly suffered from a lack of support, where ‘the strain on me is horrendous’ (P5). Many parental relationships had deteriorated, and three had broken down due to the stress:

We nearly split up to be honest . . . I don’t know how we’re still together. (P3)

We broke up for two years. (P19)

Even in sustained relationships, there was an inequality in caring responsibility:

He had no understanding . . . So I really was carrying the burden. (P10)

Many mothers worried about negative impacts on their autistic child’s siblings. Emotional and behavioural difficulties in non-autistic children were common and attributed to the familial dynamics caused by autism:

We had trouble with our older boy . . . he was suspended from school twice for fighting. I have no doubt that he’s grown up in the shadow of his sister. (P18)

Subtheme 5.2: mothers and psychopathology

Many mothers described how the stresses of caring for their daughters had negatively affected their own mental health. Over half of the participants expressed feelings of exhaustion, anxiety, hopelessness or ‘mental fog’:

Many a day, I want to just sit there and cry . . . it’s draining. (P19)

This despair was often accompanied by intense fear for their daughter’s safety and future life prospects, particularly after their own death. Guilt and self-recrimination were also common, especially in cases of self-harm or delayed diagnosis:

I cried my eyes out. I was so upset, it took me a while, to you know, but my crime was my guilt. That I’d waited till she was ten. (P14)

Mothers described feeling completely overwhelmed and ‘crumbling’ with the weight of responsibility. Some had reached a state of psychological crisis where they were ‘at my wit’s end’, had hit ‘rock bottom’ or ‘had a mental breakdown’. Two mothers divulged that they had previously experienced suicidal thoughts.

Theme 6: mothers roll up their sleeves

This final theme demonstrated mothers’ call to action, to improve their daughters’ lives by focusing on strengths, building independence and supporting one another.

Subtheme 6.1: fighting for your daughter

Mothers often framed their daughters’ autism journey as a ‘battle’ with external agencies. The ‘pushing’ began with a long struggle to acquire the correct diagnosis, which was then replaced with ‘fighting’ for services, financial allowances and school accommodations. Many placed themselves in the role of their daughter’s ‘advocate’ or ‘champion’:

I just rolled up my sleeves and went into fix mode, ready to fight. (P5)

Mothers described themselves constantly ‘haranguing’ services or schools to secure supports. While few enjoyed this antagonistic stance, mothers were pragmatic about its necessity:

You’ve got to put on your big boots now . . . You’ve got to write letters. You’ve got to make phone calls. (P11)

Subtheme 6.2: supporting strengths and independence

Mothers supported their daughters by focusing on their strengths, developing social skills and enhancing independence. All participants proudly shared information about their daughters’ positive attributes, describing them as intelligent, articulate and empathetic, with diverse interests. Mothers drew comfort from observing their daughters’ development:

I don’t worry as much now because I see the skills that she’s developing, and I can see progress. (P11)

Most mothers were proactive in arranging their daughters’ social activities and training communication skills. Mothers encouraged their daughters to develop assertiveness, resilience, self-regulation and ambition. Mothers also recognised their own personal development and achievements in adapting to difficult circumstances:

I’m educating myself . . . I’m not wasting my time sitting around crying. (P1)

Subtheme 6.3: women stand together

Many participants mentioned welcome support provided by other people, usually other women. Grandmothers or sisters offered several women respite from caring responsibilities, while others mentioned supportive experiences from health professionals or friends. Mothers particularly valued contact with other mothers of autistic children. Most mothers discussed exchanging support through social groups or online forums, which increased parenting confidence:

I’ve learned more from other parents than any other services. (P19)

Each participant expressed appreciation of the opportunity to participate in research that could help improve conditions for autistic girls and their families:

So that’s why I’m very keen to do the research because . . . the girls get diagnosed later ‘cause they go through something traumatic as teenagers, and they can’t cope. (P8)

Discussion

This study explored Irish women’s experiences of the diagnosis, presentation and impact of caring for a daughter with autism. As one of the first studies to illuminate the everyday experience of young girls with autism through the perspective of their mothers, the research makes an important contribution to the literature. The analysis suggests that the path of autism in girls in Ireland is marked by diagnostic delays, social stigma, interpersonal difficulties, mental health comorbidities and parental stress. However, these challenges are overcome by the resilience of mothers, buttressed by pride in their daughters and support from other women.

Consistent with previous quantitative and qualitative research, participants expressed feelings of stress, despair, doubt and guilt following receipt of an autism diagnosis, particularly if the diagnosis was delayed (Begeer et al., 2013; Navot et al., 2017; O’Connor et al., 2018; Rivet & Matson, 2011). Mothers corroborated previous suggestions that diagnostic overshadowing from comorbid conditions may impede detection of autism in girls (Kirkovski et al., 2013; Kreiser & White, 2014; Milner et al., 2019). Also consistent with previous research (Herlihy et al., 2015), first-time mothers felt particularly vulnerable to overlooking autism symptoms. Yet the sample also included mothers with older diagnosed sons, whose daughter’s diagnosis was still delayed despite the family’s high autism awareness. While research suggests autistic mothers are at increased risk of mental health difficulties relative to non-autistic mothers (Pohl et al., 2020), this study indicates that mothers who recognised autistic traits in themselves could construct this affinity into a sense of familial pride in their autistic identity.

Consistent with previous research (Bargiela et al., 2016; Hull et al., 2017; Livingston et al., 2019; Mandy, 2019; Milner et al., 2019; Tint & Weiss, 2018), mothers described their daughters using camouflaging strategies that resulted in diagnostic delays and underestimation of support needs. This supports arguments that prevailing diagnostic procedures do not take adequate account of the compensatory strategies implemented by autistic females (Dean et al., 2017; Lai et al., 2015; Rynkiewicz et al., 2016). While mothers reported that a diagnosis could bring relief and access to support, this was complicated by social stigma and oversubscribed or inappropriate services.

Delayed diagnoses tended to coincide with lower satisfaction with interventions and school supports. This suggests previous indications that earlier assessment predicts increased access to services and less familial stress (Begeer et al., 2013; Crane et al., 2016; Young et al., 2018) transfer to the Irish context. While satisfaction with supports varied, several participants observed that services were tailored for male children, and were particularly inappropriate for older girls. This extends previous suggestions of a male bias in adult service delivery (Tint & Weiss, 2018) to child and adolescent settings.

Results provide direct insight into the domestic repercussions of the mental health difficulties frequently comorbid with autism in young women (Crane et al., 2017; May et al., 2014; Solomon et al., 2012). Anxiety was ubiquitously reported across the sample, while depression and suicidality were almost exclusively experienced by girls who received a later diagnosis (after age 9). This aligns with previous clinical findings that adolescent girls with autism, who are diagnosed later than their male counterparts, are at greater psychiatric risk than autistic boys (Rynkiewicz & Łucka, 2015). Prior research illustrates how the psychological repercussions of child self-harm can extend across the family unit, triggering parental distress and social isolation (Ferrey et al., 2016). This study is the first to illuminate the serious implications of autistic girls’ psychopathology for maternal mental health. The devastating blow of discovering self-harm or suicidality in one’s daughter, coupled with the everyday strain of caring responsibilities, presented serious risks to the well-being of numerous mothers. These findings suggest mothers of autistic girls may require dedicated mental health supports, both for their own benefit and to enable them to support their daughters.

Yet despite the many challenges they faced, the women who participated in this study offered vivid exemplars of maternal resilience. Research shows that resilience moderates maternal stress, loneliness and depression (Ekas et al., 2016), and increases confidence and optimism (Halstead et al., 2018). In ‘rolling up their sleeves’ to demand the best possible opportunities for their daughters, mothers found reserves of determination and self-reliance – traits that they also purposely sought to cultivate in their daughters. Illustrating the communal ethic characteristic of female approaches to care (Gilligan, 1993), mothers ascribed their own strength to the support they reciprocally exchanged with other women. This aligns with previous evidence of the importance of social support and social identity in mitigating stress and psychopathology (Bitsika et al., 2013; Bromley et al., 2004; Cruwys et al., 2014; Stuart & McGrew, 2009). These results suggest that settings where mothers of autistic girls can share experiences and support may be valuable resources in promoting parental confidence and well-being.

Strengths and limitations

This study has several key strengths. Participants were gathered through a range of avenues beyond clinical settings, in an under-studied jurisdiction. The sample was geographically and socio-demographically diverse and pertained to more autistic girls of a wider age range than previous similar studies (Cridland et al., 2014; Milner et al., 2019; Navot et al., 2017). The phenomenological approach facilitated a rich, in-depth analysis of the lived experience of an under-researched population. Flexible use of semi-structured interview guides allowed women’s own voices to emerge, ensuring the data reflected information they judged important within their local contexts, rather than data predefined as relevant by external researchers. The analytic procedure accorded with best practice in qualitative research, ensuring that conclusions were reached in a systematic and transparent manner.

Nevertheless, the results should be considered in the context of certain study limitations. Recruitment’s reliance on self-selection ensured a motivated participant pool, but may have biased results towards families with more negative experiences. As a formal autism diagnosis was an inclusion criterion, with participating families reporting an average age at diagnosis of 7.8 years, the results cannot enlighten the unique experiences of autistic girls who remain undiagnosed or are diagnosed in adulthood. While typical for qualitative research (Vasileiou et al., 2018), a sample of 19 Irish women cannot and does not aim to be generalisable to other women or cultural settings. Rather, the analysis sought to elucidate the micro-dynamics of the under-researched experience of mothering girls with autism. The study represents the largest sample of mothers of autistic girls published in the literature to date. It both corroborates findings of previous similar studies (Cridland et al., 2014; Milner et al., 2019; Navot et al., 2017), for example, regarding girls’ camouflaging strategies and associated diagnostic delays, and advances several novel insights, for example, regarding the sense of familial identity and female solidarity that fostered maternal resilience. While the interviewer’s ‘insider’ status as herself a mother of an autistic girl promoted researcher sensitivity and participant trust, it also introduced a risk of bias (Greene, 2014). This was mitigated by maintenance of reflexive field notes, post-interview debriefing with the research team and inter-coder reliability testing of the interview coding. Mothers’ spontaneous expressions of appreciation of the study aims bolster confidence that interviews produced honest and relevant findings. Mothers valued the opportunity to vocalise their perspectives via the study; it is incumbent on policy-makers and service-providers to ensure their voice is heard in the design and delivery of supports for girls with autism. Finally, the study leaves unaired the voices of the girls themselves. Incorporating their first-hand perspective should be a priority for future research.

Conclusion

The results of this study complement previous quantitative studies on various facets of female experiences of autism, namely, its underdiagnosis, compensatory strategies, social challenges and parental stress. The phenomenological approach offers one of the first elucidations of how these phenomena play out in the domestic realities of families with an autistic girl. Findings highlight several issues key to understanding the experience of girls on the autism spectrum: the challenges and clinical significance of timely diagnosis, the complex mental health and social difficulties they face, and the stress but also resilience of mothers of autistic girls. By raising awareness of these issues, the study can inform policy and practice that is sensitive to the lived realities of girls with autism and their families.

Supplemental Material

IJust_RolledUpSupplementaryM(InterviewGuide) – Supplemental material for ‘I just rolled up my sleeves’: Mothers’ perspectives on raising girls on the autism spectrum

Supplemental material, IJust_RolledUpSupplementaryM(InterviewGuide) for ‘I just rolled up my sleeves’: Mothers’ perspectives on raising girls on the autism spectrum by Karen Fowler and Cliodhna O’Connor in Autism

Footnotes

Acknowledgements

The authors would like to thank each of the women who participated in this research.

Author contributions

K.F. contributed to: principal author, conceptualisation, data curation, formal analysis, investigation, methodology, visualisation, writing-original draft, writing-review and editing. C.O’C. contributed to: supervision, writing-review and editing.

Declaration of conflicting interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship and/or publication of this article.

Ethical approval/patient consent

This research conformed to the World Medical Association Declaration of Helsinki. Approval was granted by the School of Psychology, University College Dublin, Undergraduate Research Ethics Committee UREC-SPsy-18-Fowler. Written informed consent was provided by all participants in this research.

Funding

The author(s) received no financial support for the research, authorship and/or publication of this article.

ORCID iDs

Karen Fowler

Cliodhna O’Connor

Supplemental material

Supplemental material for this article is available online.

Notes

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