Autism is a neurodevelopmental difference that encompasses challenges in “social communication, social interaction” alongside “restricted, repetitive patterns of behaviour, interests or activities” (RRBIs; American Psychiatric Association, 2013, p. 31). Numbers of diagnoses have increased exponentially over the recent decades; partly due to better identification and diagnosis (Fombonne et al., 2021, 2022). Currently, global prevalence of Autism is said to be approximately 1%, with a female to male ratio of 1:4 (Baio et al., 2018; Zeidan et al., 2022). Generally, females have a higher average age of diagnosis (Russell et al., 2022). A possible reason for this is that females are under-diagnosed (Gould, 2017; Hull & Mandy, 2017; Kreiser & White, 2014; Lockwood Estrin et al., 2021; Rivet & Matson, 2011).

Much research in the early years had been focused upon the male conceptualisation of autism (e.g. the ‘Extreme Male brain’ theory; Baron-Cohen, 2002) and diagnostic tools were designed with this male presentation in mind. We are now beginning to understand that these tools may lack the sensitivity to identify autism in females to the same degree (Duvekot et al., 2016). New research suggests that there are qualitative differences in the phenomenological experiences of autistic females (e.g. societal gender expectations, distinctly higher levels of camouflaging, differences in RRBIs and increased internalised distress), which may warrant gender-specific diagnostic tools to support more refined recognition (Cook et al., 2021; Hull & Mandy, 2017; Kreiser & White, 2014; Rivet & Matson, 2011). Females appear to need to show more severe symptoms than males to be given a diagnosis (Zeidan et al., 2022), and at times females are given alternative diagnoses, only to be altered to autism in later life (Hull & Mandy, 2017). Despite this, UK-based diagnosis rates are exponentially increasing with increased female diagnosis’ being partly responsible for this; giving support to the idea that under-diagnosis may play a role in gender ratios of autism (Russell et al., 2022). According to National Institute for Health and Care Excellence ([NICE], 2012) guidelines, health professionals should be trained in identifying signs of autism and also in understanding the impact autism can have upon family members, including parents.

Parenting is defined as “the raising of children and all the responsibilities and activities that are involved in it”(Cambridge University Press, 2023). Within the family structure itself, sex and gender impacts parent–child dynamics with research showing that mothers interact differently with sons compared to daughters (e.g. Robinson et al., 1993) and that parent’s emotional availability depends on whether the parent–child dyad is same or mixed genders (Lovas, 2005). Indeed, a review reported that different parent–child dyads (i.e. mother-daughter; mother-son; father-daughter; father-son) are distinct in terms of cohesion and closeness (Russell & Saebel, 1997). Some research reports that mother and daughter relationships are highly distinct and critical for daughter’s adjustment abilities and wellbeing (Paikoff et al., 1993). It is worth noting however, that gender might not be the only factor that causes distinctiveness in parent–child dyads and that factors such as child characteristics, parent personality and marital relationship quality all contribute to the parent–child dynamic (Russell & Saebel, 1997).

Having an autistic child may make the parent–child dyad even more distinct with a previous meta-synthesis reporting that families faced multiple challenges including increased stress and isolation when parenting an autistic child (Ooi et al., 2016). Importantly, females have been vastly under-represented in this research. Given the possible differences in presentations and also the social contextual factors, including gender expectations and stereotypes imposed upon women (which may make parenting males and females a different experience), it is important to understand if the parenting experience for autistic females is also different from autistic males (Kågesten et al., 2016). Specifically mothers of autistic children typically take on the majority of caring responsibilities (Nealy et al., 2012). This may mean that mothers have key insights into their autistic daughter’s experiences, strengths and difficulties, as well as their (and their family’s) own socio-emotional needs (Fowler & O’Connor, 2021). However, not only are many previous studies on mother’s experiences outdated contextually, they are also unable to separate the experiences by child gender. This has led to a growth in studies looking into the perspectives of parents raising an autistic female in order to unearth the possible differences in this experience (e.g. Anderson et al., 2020). To date, no review has explored parenting experiences of mothers of autistic females.

This review aims to synthesise evidence from qualitative studies of parenting experiences of mothers of autistic females, to generate a meaningful picture of the evidence and identify potential gaps in current findings. A thematic synthesis approach was used to generate new insights to inform best healthcare practice and policy.

To achieve this aim, the following research questions were developed using the Sample, Phenomenon of Interest, Design, Evaluation and Research type (SPIDER) qualitative strategy (Cooke et al., 2012);

  1. 1.

    What are the reported (Design) lived experiences (Evaluation) of parenting (Phenomenon of Interest), from the perspective (Evaluation) of mothers of autistic women and girls (Sample) in current qualitative research (Research Type)?

  2. 2.

    From the mothers’ perspective, what supports caregivers to raise their autistic daughter, or makes things easier?

  3. 3.

    From the mothers’ perspective, is there anything missing in terms of support for caregivers to raise their autistic daughter, or does anything make things harder?

Method

This qualitative review (meta-synthesis) was a pre-planned, comprehensive search of the literature. It was registered on PROSPERO (CRD42022302295) on 12th May 2022 and is reported in accordance with Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA; Page et al., 2021).

Search Strategy

Searches were conducted on 5 databases (EMBASE, MEDLINE, PsychINFO, ASSIA and CINAHL) from each database’s date of creation until 20th May 2022. A specialist librarian was consulted to ensure searches were comprehensive. Reruns of all searches were conducted on 12th October 2022 and 29th May 2024 and additional studies that were relevant were included in the review. A grey literature search was conducted, which included ProQuest Dissertations & Theses Global and Web of Science. Further searches were conducted in Google Scholar (first 200 searches) with two variations of search terms (see Appendix 1 for full details of searches). Relevant journals were also scanned (e.g. Autism). Reference lists from the identified papers were searched (e.g. citation chaining/backward scanning). New citations of the identified papers were also scanned (e.g. forward scanning). All searches were completed by 29th May 2024.

This review used the Sample, Phenomenon of Interest, Design, Evaluation and Research type (SPIDER) qualitative search strategy which was developed for use with qualitative and mixed-method studies (Cooke et al., 2012). This was chosen to make searches more efficient and relevant to the qualitative literature. A wide range of search terms and truncations were used (e.g. Mother*, Father*, Caregiver*; see Table 1) to capture any studies which may have incorporated mothers without reference directly. The recommended search strategy format [S and P of I] AND [(D or E) AND R] was used, which has been found to have increased efficiency for qualitative searches compared with more traditional quantitative-based search tools, such as PICO (Cooke et al., 2012). Studies which had available and accessible English translations were included. Best efforts were made to source English translations prior to exclusion.

Table 1 Search terms for systematic review
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Selection Process

This review wanted to collate the reported lived experiences of parenting, from the perspective of mothers of autistic women and girls in qualitative research. To be eligible for the full text review (1) participants had to be a mother to at least one autistic female; (2) the children had to be diagnosed with ASD or have been assessed within the study to reach the threshold of diagnostic criteria (e.g. through the Autism Spectrum Quotient [AQ]; Baron-Cohen et al., 2001); (3) the research had to be qualitative; mixed-method research was included only if qualitative component was substantial; (4) the research had to be original primary research, which included first person accounts via interviews, focus groups or open-ended surveys of mothers’ experiences of parenting; (5) papers could be published in peer-review journals or from the grey literature, including conference abstracts; (6) the study had to be written in English or have a transcription available. Publications could be from any time period or country. The mother and child could be of any age.

Studies were excluded if (1) the perspectives in the study were only from anyone other than mothers of an autistic female (e.g. clinician perspectives); (2) the participants’ accounts were from, or not discernible from, other groups (e.g. non-autistic child, non-mother, or male child with autism); (3) any of the children in the study were not assigned female at birth; (4) studies were quantitative observations or secondary data studies; reviews, commentaries, previously used data or books; (5) studies which were solely quantitative studies; (6) papers which did not report the views of mothers of autistic females regarding parenting; (7) papers in languages other than English, if a translation was not available.

Titles and abstracts were screened independently by the lead reviewer (MO) using Covidence software, where duplicates were removed. To ensure a rigorous screening process, the lead reviewer repeated this process for a second time. In line with Boland et al. (2017), a full text review was conducted by the lead reviewer with the second reviewer (ZP) independently screening 10% of papers. Agreement was 100% using the selection and screening tool, which was developed from the inclusion/exclusion criteria and was piloted by the lead reviewer to ensure screening would be standardised (Boland et al., 2017; see Appendix 2 for selection tool). A third reviewer (KGS) was organised in the case of a disagreement, but was not required.

Quality Appraisal of Included Studies

Studies were critically appraised for methodological quality using the Critical Appraisal Skills Programme ([CASP], 2018) checklist for qualitative research. This 10-question systematic tool has been specifically designed to review areas of validity of results, results and value of results. Three other tools were piloted alongside this tool (Joanna Briggs Institute [JBI] critical appraisal tool, Mixed Method Appraisal Tool [MMAT] and the Quality Assessment with Diverse Studies [QuADS]) by the lead reviewer and the CASP appeared to be the most relevant, appropriate and specific. Each question resulted in an answer of ‘yes’ (1 point), ‘can’t tell’ (0 points) and ‘no’ (0 points) with a maximum of 10 points, as suggested by Kanavaki et al. (2016). High quality studies were deemed to score 8–10 points, medium quality studies scored 5–7 points and low quality studies scored less than five points (Kanavaki et al., 2016).

All studies were reviewed for quality by the lead reviewer. Each study was appraised individually using the CASP document. Results were then added to a spreadsheet table. A proportion of studies (30%) were appraised independently by the second reviewer with an inter-rater reliability of 80%. Disagreements were discussed and resolved together or with the third reviewer. The CASP tool was used to better understand methodological limitations and was not used to exclude papers (Campbell et al., 2011).

Data Extraction

Data was extracted from the included studies independently by the lead reviewer and for rigor, the second rater also extracted 10%, with 100% agreement with the lead reviewer’s extraction. Data extracted included; author, year, journal type, study type, study aim, study design, country, setting, inclusion/exclusion criteria, numbers of participants, funding source, mean age of mothers, mean age of focus children, number of focus children, mean age of child at diagnosis, mothers’ ethnicity and working status and study findings. As not all studies reported all of the above items in the same way, extracted data points were changed to a coherent format for readers where possible (e.g. means and ranges for ages). Where data was missing the lead reviewer contacted the studies main contact to ask for further information. If there was no answer, “not reported” was documented. The information extracted was inserted into a spreadsheet by the lead author (Microsoft Excel, Forth Valley, Scotland). If studies were mixed-method, only the qualitative findings were extracted.

Reflexivity

It is important to be reflexive in the process of research as a researcher’s previous experiences of the world may impact upon their interpretation of data. The lead researcher conducted this research as part of their doctoral training in clinical psychology in Scotland. Their previous roles have largely involved working with children and their families, in both psychological and third sector roles and they have been trained in evidence-based parenting techniques. The second reviewer is also a doctoral student. The third reviewer is an experienced researcher who specialises in the field of autism. All reviewers are females and two are mothers of non-autistic children. A journal was kept by the lead reviewer to help reflect upon how their experiences may impact upon this review.

Data Synthesis

Data was synthesised using the ‘thematic synthesis’ approach, developed by Thomas and Harden (2008). This approach is both integrative and interpretative, which allowed the researchers to stay close to the results of the original studies, but also to make a transparent analysis of the data and produce new concepts or hypotheses.

The data was coded by the lead reviewer using NVivo 20 software, which has been designed specifically to facilitate coding in qualitative research. The “results” sections in each study were filtered manually for mother’s views only. The data was synthesised by the lead reviewer and the second reviewer checked 10% of coding; agreement was initially 63%. Disagreements were resolved through discussion together and with the third reviewer, where appropriate. A database of the decisions was recorded. Codes were then grouped into larger ‘descriptive themes’. Discussions between the review team (MO, ZP and KGS) were to consider the grouping of themes. Then themes were grouped into over-arching ‘analytical themes’. This required the researchers to interpret the findings and the lead researcher discussed reflectively with the other researchers during this stage.

Community Involvement Statement

This review was conducted as part of a doctoral project and was not completed in conjunction with individuals or groups from the autism community.

Results

Description of Included Studies

The searches generated 3423 studies of which 1283 were duplicates. The remaining 2140 studies were screened, with 1650 being excluded at this stage. A full text review was conducted on the remaining 490 and 17 were eligible for inclusion in this review. One study noted a previous primary data study which may have been appropriate (Hamdani et al., 2023). The author was emailed, but no answer was received, and the conference reference appeared to be a poster, which was not accessible. Citation searches further identified 11 studies, of which 5 were eligible for inclusion after full-text review. Therefore, a total of 22 studies were included in the review (see Table 2 for detailed summary of the included studies; see Appendix 3 for examples of excluded studies). It is worth noting that the inclusion criteria for the participants was that the child had either received an autism diagnosis and/or was assessed in a test that met diagnostic criteria (e.g. the Autism-Spectrum Quotient [ AQ]).

Table 2 Detailed summary of included studies
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Fourteen studies were from peer reviewed journals and 8 were theses/dissertations. Three studies were mixed-method studies (Eriksen, 2016; Gray et al., 2021; Watson, 2014) and the remainder were qualitative. Studies were largely interview-based, with two studies using interviews plus further ethnographic approaches (e.g. drawings and visual elements; Leeper, 2021; Tomlinson et al., 2022). Three studies undertook interviews in a focus group format (Gray et al., 2021; Mademtzi et al., 2018; Milner et al., 2019); and two studies were case studies (Cobb, 2014; Erspamer, 2016). Studies varied in their design with 12 using thematic analysis, 4 using grounded theory (Cobb, 2014; Gray et al., 2021; Leeper, 2021; Watson, 2014), 4 using Interpretative Phenomenological Analysis (Anderson et al., 2020; Cridland et al., 2014; Freeman & Paradis, 2022; Rabbitte et al., 2017), 1 using directive content analysis (Erspamer, 2016) and 1 using a naturalistic enquiry; an interactive process (Navot et al., 2017). A range of settings were utilised with most studies being multi-modal (11/22). Other studies had interviews taking place online only (1/22; Etchison et al., 2022), at home only (2/22; Cobb, 2014; Cridland et al., 2014), via telephone only (2/22; Eriksen, 2016; Laughlan & Ballantyne, 2021) or in clinic only (2/22; Gray et al., 2021; Mademtzi et al., 2018). Four studies did not report their setting(s) clearly (Cook et al., 2018; O'Hagan, 2020; Rabbitte et al., 2017; Tomlinson et al., 2022). One study had been originally part of a larger data collection project, but the author explained that this data was written up separately in individual case studies (Cobb, 2014). Eight studies were conducted in USA, 11 in the UK and Ireland, 2 in Australia and 1 in Canada.

Studies included a range of participants from mothers only (5/22), to mothers and daughters (Cridland et al., 2014; Eriksen, 2016; Erspamer, 2016; Land, 2015; Laughlan & Ballantyne, 2021; Leeper, 2021; Milner et al., 2019; Navot et al., 2017), mothers and fathers (Freeman & Paradis, 2022; Mademtzi et al., 2018; Sedgewick et al., 2018; Sproston et al., 2017), mothers, fathers and daughters (Cook et al., 2018), mothers, fathers and other relatives, e.g. grandmother (Rabbitte et al., 2017). One of the studies included mothers and daughters as well as school key workers (O’Hagan, 2020), one study included autistic women, parents and one psychotherapist (Tomlinson et al., 2022) and finally another study included mothers, fathers, autistic females, 5 siblings and 3 noted as professionals, not specified (Watson, 2014). Sample size varied from 1 (Cobb, 2014) to 40 families (Mademtzi et al., 2018). The focus child within the studies ranged in age from children (e.g. under 12 years) to adults (e.g. 18 + years). The majority of studies included focus children and teenagers (10/22). Other studies included focus children only (3/22; Cobb, 2014; Etchison et al., 2022; Gray et al., 2021), teenagers only (e.g. 13–18 years; 3/22; Eriksen, 2016; O’Hagan 2020; Tomlinson et al., 2022), teenagers and adults (1/22; Land, 2015), children through to adults (3/22; Mademtzi et al., 2018; Milner et al., 2019; Navot et al., 2017) and finally adults only (2/22; Erspamer, 2016; Leeper, 2021).

The mother’s age was not always reported or clear (12/22), but when these were extractable they ranged between “under 25–over 35s” (1/22; Etchison et al., 2022), twenties to fifties (1/22; Fowler & O’Connor, 2021), thirties to fifties (3/22; Anderson et al., 2020; Land, 2015; Rabbitte et al., 2017), thirties to fifty plus (1/22; Cook et al., 2018), “mid-forties” (1/22; Cobb, 2014) and forties to fifties (3/22; Cridland et al., 2014; Eriksen, 2016; Watson, 2014). Of the studies who reported mothers’ ethnicity; most reported were described as White or Caucasian. There were also studies which included mothers who were described as Mixed-race, Black, Asian, Korean-Canadian and Native American.

Methodological Quality

The review assessed the methodological quality of 22 studies. Each question within the CASP framework was scored as ‘yes’ (1), ‘no’ (0) or ‘can’t tell’ (0), yielding a maximum score of 10 (Kanavaki et al., 2016). Four studies scored in the ‘medium’ quality range (Cobb, 2014; Eriksen, 2016; Gray et al., 2021; Laughlan & Ballantyne, 2021) and the remaining 18 scored in the ‘high’ quality range (see Table 3); with 7 scoring the highest possible score for quality available on the CASP. All studies were found to have a clear statement of aims and have used qualitative methodology appropriately. Increased transparency would have supported a better quality assessment, as several items were not sufficiently detailed to allow for a clear “yes” answer. The most common issue with studies was that they didn’t always adequately consider the relationship between the researcher and the participant; with 7 ‘can’t tell’ answers and 5 ‘nos’. This may be due to the methodology of these studies as being less focused upon this than other methodologies (e.g. thematic analysis vs. IPA); however, future studies should consider this as an essential step within research to ensure the participant(s) are not biased by their relationship with the researcher(s). Two studies were not clear within their paper about ethical considerations; however, publisher/university guidelines were checked and all included studies required ethical statements/review board checks prior to publishing; as such, these papers were given “yes*” on these grounds. In addition, the recruitment strategy for 1 study was not deemed as appropriate (with 6 studies needing more transparency before a “yes” could be given).

Table 3 CASP quality checklist
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One study was found to have not analysed it’s qualitative data sufficiently rigorously (Gray et al., 2021). This was a mixed-method study and this may have meant that the focus on quality was more on the quantitative side of the research, which could be due to the limited guidance and conventions surrounding this in mixed-method research (Dempsey, 2018; Richards, 2015), however much of their raw data was available within the paper allowing us to rigorously analyse this in our thematic synthesis. Overall, many studies would benefit from more transparent demographic information (including mothers’ age, ethnicity and child demographics) Fig. 1.

Fig. 1
figure 1

PRISMA diagram of study searches (Page et al., 2021)

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Synthesis

A total of 468 codes were found from 22 studies. Findings were grouped into 17 categories within 5 superordinate themes: ‘The diagnosis process and getting support’, ‘Mother’s role as all consuming’, ‘Experiences of family wellbeing’, ‘Mother as an expert observer’ and ‘The hopes and fears of mothers’ (See Table 4).

Table 4 Super-ordinate themes and subthemes
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Finding 1: The Diagnosis Process and Getting Support

This finding consisted of four main areas: early concerns, searching for answers, fighting for support and impact of support. Within the studies, there was recognition that early signs of autism were apparent to some mothers; for many mothers, there was an intuitive sense that something was different to what they had expected, but that they couldn’t identify what this was. Many mothers reflected that the presentation of autism was not initially taken forward by them; either because it was considered a “boys” thing or because they felt that their daughter’s presentation did not fit exactly to what was typically considered “autistic” (e.g. the “traditional” male presentation).

The process of searching for answers is described amongst the studies as challenging. The main challenge noted by mothers was the delay in diagnosis, with some mothers feeling that they had lost out on key supports and interventions in their daughter’s early life, because of the delays in diagnosis. Mother’s felt that this was the case because of the misidentification of autism, from both themselves and professionals. There were positive stories of more straightforward assessments which tended to occur if the mother knew someone who was knowledgeable in the area (e.g., a friend with an autistic child).

Amongst the studies, there was a sense that although the diagnosis process was challenging, the diagnosis itself was empowering, giving them confidence and direction, with many reflecting that they felt that their understanding of their daughter and their parenting stance had changed for the better. For some mothers, support from health services ended as soon as the diagnosis was given and they had to embark on a new journey of asking for help. Accessing support after the diagnosis was described by many as a fight and not a given. Mother’s actively sought support from school, health and social circles. There were large numbers of barriers to support recognised by the mothers, with inappropriate supports and lack of resource being highlighted. Support was often not available and mother’s felt that this was due to the fact that there was little information and professional knowledge out there about autism in girls. When supports were introduced, mother’s spoke of provision being geared towards boys with autism (e.g. using toys which were typically seen as more masculine), rather than having accessible supports for their daughters.

The impact of support was also discussed amongst the studies. It was clear that when appropriate supports were not in place, mother’s felt their daughters were excluded from being part of schools or groups, and often ostracised, undergoing additional difficult transitions (e.g. changing schools), unlike those in settings that had been able to provide the provision required. When appropriate supports were in place, such as a nurturing teacher, the positive impact was clear, with daughters managing in school and parent’s feeling less overwhelmed. Mothers noticed that there was a cumulative progress in their child’s development that happened slowly over time when the appropriate provision was in place. In terms of what helps in schools, some of the mothers felt that their daughters would alter their behaviour in a more productive way if there was someone other than them [the mother] teaching them about it. Mothers also highlighted that when information was used in a way that met their daughter’s needs (e.g. visual rather verbal) they learned more. In terms of parental support, mothers spoke about how much they appreciated social supports such as online support groups; “I’ll tell you the best thing I’ve done is join a Facebook group called colouring outside the lines. They honestly, I don’t know what I would have done without them.” (Anderson et al., 2020, p. 1550).

Finding 2: Mother’s Role as All-Consuming

Three key areas were noted in this finding; the high level of parental involvement, the role as all-consuming and the varied parent techniques used by mothers. The level of mothers’ involvement in their daughters’ lives appeared to be higher than may be expected for a neurotypical daughter. Mothers spoke of their involvement in many areas of their daughter’s lives from involvement in supporting with hygiene and menstruation to actively scaffolding their daughter’s social lives. A key role for mothers was that of the advocate. They described a significant involvement in advocating their daughter’s needs and wants in many professional settings including the diagnostic process, school and beyond. They also detailed how they had a dual role as protector of their daughter, but also as a realist. For example, they supported their daughters with social situations to prevent bullying, but also tried to help their daughter to understand the reality of life and that it is not always straightforward and easy. Mothers described the tasks as all consuming, with much of their time dedicated to planning and organising for their daughter. To support their daughters, mothers spent considerable time actively seeking information about autism in girls and could be seen as continual learners.

To support their daughters, mothers used an extensive range of different techniques. Many can be seen as typical parenting strategies, regardless of their child’s neurodiversity, but used more extensively. The most commonly mentioned strategies were around direct and open communication with their daughter, which appeared to support them to deal with the day-to-day difficulties as they arose. For example, many mothers had openly spoken with their daughter about their diagnosis and felt that this was a positive decision. Another key supporting strategy was to have short, but repeated, discussions with their daughter about topics to drip feed information. This appeared to have the benefit of the information slowly being accepted by the daughter.

Mothers also spoke of their conscious effort to focus on the positives of their daughter’s presentation and highlight the strengths that their daughter has. This was in addition to allowing their daughters to be who they are and following their lead where appropriate and include their daughters in decision making. This could be seen as part of the mothers’ strategies to support their daughter to develop independence. Another key strategy that mothers mentioned was planning things in advance, both in terms of preparing themselves mentally for something they knew would potentially be a challenge, but also preparing their daughter for upcoming events (e.g. trying panty liners prior to their daughters period starting; Eriksen, 2016).

Finding 3: Experiences of Family Wellbeing

The synthesis captured the experiences of different family members’ wellbeing, from the perspectives of mothers. The overall picture was that the whole family was impacted including parents, their daughter and siblings. No information was available on the impact upon wider systemic groups/individuals. Some mothers noted that they had to be involved in their daughter’s lives to the degree to the detriment of their other children, including their other children having fewer positive experiences, such as sleepovers and extra-curricular activities. For many, there was also a toll on their spousal relationship, with some noting conflict or separation during this time. Some noted feelings of resentment towards their partners, who were seen as able to leave to go to work or take less responsibility in organisational planning within the family environment. In addition, mothers spoke of the financial burdens that ensued, between the additional health care costs and, at times, the reduction in hours at work to support their daughter.

The synthesis collated considerable information regarding the impact of having an autistic daughter upon mothers. It was common that mothers noticed an impact of having to watch their daughters struggle socially, which was described as distressing. Mothers highlighted that they felt there was still a stigma attached to having an autistic diagnosis, but little was said about what that meant for them. Furthermore, as well as spending time blaming themselves for their daughter’s difficulties, they also perceived others as not believing the diagnosis or understanding about their daughter’s difficulties. This has meant that they have experienced others as having too high expectations of their daughter and being inconsiderate. There was also a sense that mothers as well as their daughters were socially isolated from their communities, in part because of the community’s response to their daughter’s presentation and also because of the time they spent supporting their daughter. Despite this, mothers highlighted the rewarding feeling of parenting their daughter alongside the benefits it had given them, such as becoming a more empathetic person.

A range of emotions were experienced by mothers during parenting. At times mothers felt overwhelmed with the situation as a whole, particularly at the point of diagnosis, with comments around feeling unprepared, incompetent and lacking in confidence. Guilt, shock, denial and relief were all emotions felt by mothers during and after the diagnosis process. A feeling of exhaustion was noted that appeared to come from the sense that mothers were always in their parenting role. In addition, mothers spoke about going through a process of grieving the loss of their expected parenting journey. There was also considerable frustration felt, which mostly appeared to revolve around people’s lack of understanding about autism in girls and trying to gain the appropriate supports for their daughter.

Mothers also described their desire to have a girl and the expectation of what their relationship might look like in the future. Some described the relationship with their daughter as qualitatively different from that which they expected. Little evidence was found about this bond, but it was described as a difficult bond to create.

As is discussed throughout this review, there are a number of impacts upon the child themselves. However, of note was the mothers’ view that bullying was considerable and had a negative impact upon their daughters’ mental health. Mental health difficulties were noticed by mothers, with particular focus given to anxiety. The emotional toll that masking can take on their daughters was clear; this appeared to leave their daughters feeling exhausted after a school day and potentially led to the emotional meltdowns within the house.

Finding 4: Mother as an Expert Observer

Across the 22 studies, there were a range of observations from mother’s which painted a picture of their daughters’ presentation. Some of the observations highlighted traits that would be typically expected in a traditional autism assessment. These included intense interests, social communication difficulties, sensory issues and rigidity. Restrictive eating was also noted as an observable feature of some presentations. Positive aspects were also noted, with high moral compass, compliance and organisational skills being mentioned by some mothers. Overall, there was a sense that mothers had gathered a substantial knowledge and expertise about their child.

Most mothers felt that the presentation of their daughter was different to that of a male presentation. One key observation was that they felt their daughter struggled with social communication; interacting with their peers and had a lack of social awareness, but that they had more motivation and interest in being social than autistic males. Mothers noted that their daughters had difficulty fitting in with other children at school. They described that their child didn’t fit in with either the girls or the boys at school. Mothers felt that this might be because of gendered social expectations, where girls are typically expected to be “girly” and their daughters did not adhere to this. They described that their daughters chose practicality over fashion and one mother wondered whether this had a negative impact on fitting in. Mothers felt that struggling to manage conflict was also a barrier to maintaining friendships.

However, there were ways in which their daughters were fitting in. Mothers described a tendency to either bond more with the boys in the class or with children with neurodevelopmental differences. Daughters’ friendships circles tended to be small and mothers described a social process of building friendships that their daughter tended to follow, which typically started through bonding over their intense interests.

The synthesis identified a theme of masking through the 22 papers, with mothers reporting that it was used by their daughters as a way of coping in school. Mothers also saw this as a problem at times, which could lead to emotional burnout, mis-diagnosis and become a barrier to getting support. Some mothers felt that because their child’s need was not physically visible and they tended to be more introverted than autistic boys, people often did not understand that there was anything different about their child; posing the difficulty of not being believed.

Some mothers described their daughter’s behaviour around hygiene and puberty as challenging, particularly around resistance to the idea of periods, the heightened emotions it brought, and not understanding or carrying out basic hygienic practices; such as cleaning up a menstruation mishap, despite being encouraged by their parents. Others felt that their daughter managed well and better than they had anticipated; responding well when education around puberty was given. Some mothers appeared to take a role in supporting their daughter with their period pain through medication and they received positivity from their daughters about the predictability of periods that the pill could offer.

Finding 5: The Hopes and Fears of Mothers

Mothers’ hopes for their daughter ranged from the immediate to those in the distant future. Mothers wanted their daughters to have appropriate support as soon as possible. In the future, mothers spoke of wanting their child to have feelings of purpose, such as jobs which align with their abilities and interests. Mothers also had more abstract hopes, such as their child feeling fulfilled and happy.

Mothers spoke about the journey to accepting their daughters diagnosis as being a difficult one. Studies described that mothers felt a range of emotions towards the diagnosis of autism, which one compared to a “rollercoaster” of emotion (Fowler & O’Connor, 2021, p. 279). Denial and disappointment were described, given the loss of the traditional view of what life would be like for their daughter (e.g. getting married and having children). The mothers described a period of adjusting and reshaping their expectations, with the result being that they were more accepting and embraced their daughter’s future.

Mothers noted their safety concerns about their daughters given their social communication difficulties and lack of insight, meaning they were trusting and naive to risks of exploitation. This was particularly evident around romantic relationships, with concern for their daughter’s lack of understanding about romantic interactions as they are less “scientific” (Cridland et al., 2014, p. 1268). It was also prevalent in terms of non-romantic interactions, particularly around being bullied, their absconding risk, and their risk of suicidality.

Discussion

This systematic review sought to synthesise qualitative evidence from 22 qualitative or mixed-method studies of mothers’ parenting experiences of autistic females; to generate a meaningful picture of the evidence to help inform clinical practice. Our meta-synthesis identified a total of 5 superordinate themes, reflecting the experiences of over 150 mothers; ‘The diagnosis process and getting support’, ‘Mother’s role as all consuming’, ‘Experiences of family wellbeing’, ‘Mother as an expert observer’ and ‘The hopes and fears of mothers’.

Collectively, this research is somewhat in line with the broader literature conducted with mothers of autistic children, in terms of the social, emotional and family impacts upon them (Legg & Tickle, 2019; Papadopoulos, 2021). However, there are also unique difficulties perceived by mothers of autistic daughters; including prominent issues around diagnosis/misdiagnosis, finding and receiving appropriate support/information and puberty needs.

Our review found that, in line with the wider literature, the journey to obtaining a diagnosis for an autistic daughter was not always straightforward; often being lengthy and challenging, with misidentification and the perception that this was a more prominent difficulty for females (Begeer et al., 2013; Dworzynski et al., 2012; Russell et al., 2011). These challenges appear to be specific to having an autistic daughter and may explain the disparity in ratios of prevalence of autism by gender (i.e. that misidentification may negatively impact upon prevalence rates; Bargiela et al., 2016; Cridland et al., 2014; Trubanova et al., 2014). After reaching a diagnosis, getting support could feel like a battle. When supports were given, they could be unsuitable for autistic daughters; when appropriate, supports made a definite positive difference to both daughter and mother; highlighting a positive opportunity for quality improvement in health, social care and educational settings.

Our review found that mother’s largely felt consumed by the role of parent to an autistic daughter. They spent much of their time devoted to learning about and supporting their child, to a greater extent than would typically be expected. Their roles were extensive and covered vast areas of their child’s life; from socialising to personal hygiene. Along the way mothers conscientiously utilised an extensive array of parenting strategies to support their daughter’s development, de-stigmatisation and acceptance of change; many of which could also be utilised by healthcare and education staff to create consistency for the autistic child. To cope, mothers tended to use social supports, such as online groups, which is in line with recent research on coping mechanisms in parents of autistic children; where mothers were more likely to use emotion-focused coping, such as seeking social support (Al-Oran et al., 2022).

Mothers felt that their relationship with their daughter was qualitatively different to what they had expected it to be. When developing supports, commissioners may therefore wish to consider supporting mothers to understand and explore how this relationship may feel different; thus supporting acceptance and potentially impacting upon wellbeing.

This synthesis also found a range of evidence to suggest that there were a range of impacts across the whole family. This included impacting upon sibling social experiences, marital relationships, financial matters, mothers’ wellbeing and daughter wellbeing, which is in line with research conducted with parents of both autistic males and females (Ooi et al., 2016). Less however was apparent about the direct impact upon fathers and whether more impacts may be apparent from their perspectives. Studies with father perspectives are infrequent and more is required in this area, but suggest that fathers may find it harder to cope with an autistic child and so this viewpoint is extremely important to understand in order to support whole families (Legg & Tickle, 2019).

Our findings suggest that the mothers have built up a range of observations of their daughters over time, which paint a picture of their presentation. Their expertise suggests that not only do autistic females present with many “traditional” autistic traits, but also have qualitative differences. Mothers saw these differences in increased motivation to socialise, masking and dealing with menstruation. These qualitative differences have been noted in recent studies from the perspective of professionals and autistic females themselves (Gosling et al., 2023; Hiller et al., 2014; Tierney et al., 2016). These specific additions may help to explain why autistic females experience more mental health difficulties than their male counterparts (DaWalt et al., 2021). Given these qualitative differences, we may also reasonably expect autistic females that have been diagnosed to score differently to males using diagnostic tools (e.g. Social Responsiveness Scale; Constantino & Gruber, 2012). However, researchers have found no such difference between male and female scores on the SRS-2 (Rodgers et al., 2019). This could be because there is no difference, but it could also be possible that females who would score significantly differently have not been identified as having possible autism and so are missing from such studies; creating a cyclical difficulty where we continue to miss those who present in a less “traditional” way (Kirkovski et al., 2013; Kreiser & White, 2014).

This review highlighted that autistic girls often did not fulfil “typical” gendered expectations (e.g. wearing a dress), and bonded more with male peers. However, what appeared to be missing from this synthesis was a discussion of gender identity and mothers’ experiences of parenting an autistic person who was assigned female at birth (i.e. was given the sex of female at birth), but who may experience gender incongruence or dysphoria related to this. Empirical studies are now showing that this is more common in autistic people than neurotypicals (Glidden et al., 2016; Nabbijohn et al., 2019; van der Miesen et al., 2018; Warrier et al., 2020) and recent studies are now beginning to explore this from both autistic adolescent’s and adult’s perspective (e.g. Coleman-Smith et al., 2020; Oliver et al., Unpublished). Future studies would benefit from considering a parents’ view, to help understand this experience further.

Strengths and Limitations of the Review

Firstly, it should be acknowledged that due to tight time and budget constraints related to clinical doctorate research, a key limitation of the current review is the lack of community involvement. Additionally, despite using a thorough SPIDER search strategy, which was designed to catch qualitative studies in more systematic way than other methods (e.g. PICO), a further 5 studies were found using backward and forward chaining. This highlights that there are limitations to this method and that a thorough and multi-level search was important to ensure all available and appropriate studies were found.

The included studies have limited representation from black or ethnic minorities; studies were based in the UK, Ireland, USA, Canada and Australia; all of which are westernised countries. As such, this review would not generalise to the views of mothers’ living in non-westernised countries. Future empirical studies which have a broader cultural reach may help to identify the impact of societal expectation on the autistic female presentation. Despite best efforts, this study did not include five studies due to translations not being available. It was unclear as to how relevant these studies were to the current review and may or may not have addressed the research question.

The current review only considered the views of mothers to increase homogeneity and specificity of this perspective. This gives a clearer picture of how mothers’ experience parenting in this context and also highlights the need for other perspectives to be explored (i.e. fathers’ perspectives). All appropriate data was collected; other reviews may wish to be broader and include fathers, but for the purpose of this review we excluded papers where the mothers’ views were not extractable. As with most studies, there is a risk that those who responded to the included studies may have missed a cohort of underrepresented mothers (for a variety of reasons); however, given that views were largely consistent over the 22 studies, this suggests that many mothers’ views are captured within this review.

Given the range of ages of daughters in these studies (under 5 to 29) a broad range of experiences were captured. Future studies should consider the experiences of mothers with autistic adult daughters, to better understand if there are any gender-specific differences which occur in later years (e.g. around menopause). This may now be more possible, given that diagnosis is becoming more common in adulthood; particularly for women (Russell et al., 2022).

This thematic synthesis was conducted with rich data to give results which had transparent links with the texts included (Thomas & Harden, 2008). As with all thematic synthesis, a level of interpretability is utilised. It has been conducted in a rigorous and reproducible way; a co-rater was used to increase robustness at all levels; screening, full text, data extraction, quality assessment and coding. A reflection diary was taken and reflective discussions with academic supervisor were also utilized.

This review has clear implications for healthcare and national policy. It shows that despite best efforts from healthcare and education, there are still improvements to be made in the process of diagnosis of, and support for, autistic females. In addition, the impact upon families of not having appropriate support is clear and so there are implications for third sector organisations; specifically, the provision of online support groups for mothers and learning from mothers’ extensive array of positive parenting techniques to support their daughters.

Conclusions

This synthesis sought to provide a robust account from mothers’ experiences of parenting autistic women and girls. Overall, the experience of mothers in these 22 studies highlight that timely, accurate identification and appropriate care, using a range of positive parenting techniques, having support for mothers, and focusing on their daughter’s positive traits, are all things that make the experience of parenting more manageable. In contrast, lack of timely, accurate identification or appropriate care, feeling unsupported by others (e.g. spouse and/or professionals) and lack of adequate support for mothers all appear to make the experience of parenting feel more difficult. Despite having timely and appropriate care for the whole family in best practice guidelines (e.g. NICE), this does not appear to be a uniform experience; highlighting an opportunity for the development of more appropriate, timely diagnosis and support pathways, which are understanding of gender-specific differences in autism and consider the insights of mothers of autistic daughters.