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‘Yebo, it was a great relief’: How mothers experience their children’s autism diagnoses

PMCID: PMC10091053

PMID:

Abstract

Background There is an emerging body of knowledge on the lived experiences of parenting a child with autism from a maternal perspective. Mothers’ reactions to their children’s autism diagnoses have been identified as a key factor influencing their children’s long-term outcomes. Objectives This qualitative study aimed to explore how South African mothers experience their children’s autism diagnoses. Method Telephonic interviews were conducted with 12 mothers from KwaZulu-Natal to understand their experiences prior, during and following their children’s autism diagnoses. The data were analysed thematically according to the values of ubuntu , social support, culture, tradition, interpersonal relationships, interconnectedness and continuity and compared to the existing scholarship, employing an Afrocentric theoretical lens. Results The participants held strong cultural and religious beliefs which influenced the entire diagnosis process. Some, who waited a long time, turned to traditional healers or religious leaders. While some reported feeling relieved after the diagnosis, in the sense of at least having a name for their child’s condition, they also reported feeling overwhelmed by the realisation that there is no cure for autism. Over time, mothers’ feelings of guilt and anxiety declined, and they became increasingly resilient and empowered as their understanding of the meaning of their children’s autism diagnosis deepened, but many continued to pray for a miracle. Conclusion Future research should focus on how to enhance support for mothers and their children during each of the three phases of autism diagnosis: prior, during and following their children’s autism diagnoses. Contribution The study highlighted the crucial role of community-based religious and cultural organisations in providing appropriate support to mothers and their children diagnosed with autism, aligned to the values of ubuntu , social support, culture, tradition, interpersonal relationships, interconnectedness and continuity.

Full Text

Autism spectrum disorder (ADS), or autism, is a complex, lifelong neurodevelopmental disorder characterised by difficulties related to social understanding and communication, repetitive or restricted behaviours and interests, as well as challenges related to adaptive functioning (American Psychiatric Association [APA] 2013). Zeidan et al. (2022) estimate that one out of one hundered children are diagnosed with ASD worldwide. Autism has been diagnosed in all races, ethnic and socio-economic groups and appears to be more prevalent in boys than girls (Kasari, Sturm & Shi 2018). The diagnosis of autism includes an evaluation of intellectual and language barriers to learning (Pillay & Brownlow 2017; Tonnsen et al. 2016). Scientists believe that both genetic and environmental factors are likely to play a role in autism (APA 2013; Sauer et al. 2021).
In this article, the authors illuminate the complex journeys of South African mothers whose children received an ASD diagnosis. While their experiences resemble maternal experiences globally, the authors seek to understand their lived experiences from an Afrocentric perspective, since existing scholarship confirms that early diagnosis combined with appropriate intervention leads to improved developmental and family outcomes (Farooq & Ahmed 2020). Mothers experience challenges caused by their child’s behaviour, influencing both mother and child’s acceptance within their communities (Shattnawi et al. 2021). Mothers’ challenges are associated with adverse psychosocial impacts because of their perceptions of loss, being judged by others, a lack of social support and personal distress (Wayment, Al-Kire & Brookshire 2019).
The family’s reactions to the child’s autism diagnosis have been identified as a major factor affecting long-term outcomes (Lord et al. 2018:3). Consequently, Lord et al. (2018) recommend that family members should be empowered with information related to resources and next steps when the autism diagnosis is communicated by healthcare professionals who are specially trained to do so.
Autism diagnosis frequently occurs after a lengthy, costly and stressful process (Clasquin-Johnson & Clasquin-Johnson 2018). Upon confirmation of an autism diagnosis, mothers may experience a range of emotions including shock, guilt and relief (DePape & Lindsay 2015; Lopez et al. 2018). Researchers characterise mothers’ experiences as a complex journey accompanied by mixed emotions (Crane et al. 2016; DePape & Lindsay 2015). While mothers are partly relieved to receive a diagnosis, they are also overwhelmed by the lifelong implications of autism (Lovelace, Robertson & Tamayo 2018). Over time, mothers’ feelings of guilt and anxiety decline, and they become increasingly resilient and empowered as their understanding of the meaning of their children’s autism diagnosis deepens (Marsh et al. 2017).
A study of 1000 mothers’ experiences of autism diagnoses in the United States of America revealed that mothers were more satisfied if: (1) there was a shorter time lag between initially seeking help and receiving a diagnosis, (2) diagnosis was received at a young age, (3) quality information on autism accompanied the diagnosis, (4) the professional who communicated the diagnosis framed autism in a positive manner and (5) they perceived intervention and support as accessible (Crane et al. 2016). Similarly, Webb et al. (2014) found that mothers tend to be more satisfied when their children are diagnosed during their early years. In addition, if mothers receive information on the nature of autism as well as how and where to access appropriate support, they are more satisfied with the diagnosis (Hoogsteen & Woodgate 2013; Webb et al. 2014). In contrast, if the process of obtaining a diagnosis is protracted, mothers may turn to alternative treatments such as dietary therapies and traditional healers, because of their reduced confidence in the healthcare professionals involved (Dougherty et al. 2016).
International studies have found that because of their caregiving burden, many mothers of children with autism experience high levels of psychological distress, health-related problems, lower levels of resilience and difficulties in family life, including marital and sibling relationships and family socialisation (Lovelace et al. 2018; Papadopoulos 2021). Some mothers experience chronic sadness and depression because of their children’s social and communication difficulties and challenging behaviour, which leads to self-accusation and negative attitudes towards life (Tekinarslan 2018).
Consequently, researchers have sought to identify protective factors for mothers of children diagnosed with autism (Muir & Strnadová 2014). Hope has been identified as a shielding or protective factor, as feeling hopeful reduces anxiety (Oprea & Stan 2012). In addition, when professionals establish a good rapport with mothers, their level of satisfaction increases, especially if mothers feel respected and included in decisions that benefit their children (Hoogsteen & Woodgate 2013).
In South Africa, there is a dearth of research on mothers’ experiences of the diagnosis of autism, although a few studies have focused on mothers’ experiences of their children’s diagnosis of a disability (Duma, Tshabalala & Mji 2021; Gow, Mostert & Dreyer 2020; Mkabile & Swartz 2020). It has also been noted that ‘There are no official statistics available on the prevalence of ASD among children in LMICs [low- and middle-income countries], including SA’ (Bakare & Munir 2011, cited in Erasmus et al. 2022:57). Consequently, most of the literature is from developed country contexts. This is the gap that this study aims to address. In this article, the authors will focus on mothers’ experiences prior, during and following their children’s diagnoses of autism.
Asante (1983) defines Afrocentricity as ideas and actions shaped by African values, interests and perspectives. It promotes an appreciation for African identity and culture (Mkabela 2015; Richman 2018). The goal of Afrocentricity is to resituate African people ‘historically, economically, socially, politically, and philosophically’ (Asante 2003:3). This study was informed by Afrocentricity and the philosophy of ubuntu, which features concepts such as social support, culture, tradition, interpersonal relationships, spiritual interconnectedness and continuity. Ubuntu illuminates an African ethos, beliefs, experiences and aspirations (Bolden 2014; Majoko 2020; Mkabela 2015). These concepts should not be viewed as separate; rather, they are closely related, as they emphasise interconnectedness and reciprocity (Dolamo 2014; Gade 2015).
These concepts guided our data analysis and deepened our insights into mothers’ experiences from a communal and contextual perspective (Mkhize & Ndimande-Hlongwa 2014; Schiele, Gottschalk & Domschke 2020). According to African cultural values, anyone who experiences hardships should be treated with respect, receive support and be protected from marginalisation (Dolamo 2014). All children should benefit from shared wisdom and community networks of support, because the entire village (community) is responsible for raising all its children (Chaplin 2013; Gade 2015).
Human understanding is related to epistemology (ways of knowing) entrenched in culture (Baloyi 2015). In addition, African indigenous knowledge systems (IKS) formed a central element of this research (Asante 1987; Muwanga-Zake 2010). This compels the authors to question whether to approach autism from the dominant medical perspective of disability and a disease to be cured, or from a social inclusion perspective where the emphasis is on acceptance of diversity and the provision of support. The authors agree with the sentiments of Clasquin-Johnson (2020a:249), who explored African perspectives on autism, noting that:
The authors need to explore how connectedness, spirituality and traditional practices (Baloyi 2015) could play a supportive role for mothers and their children. In relation to this study, mothers may question what caused their child to have autism and may attribute autism to bewitchment or a reprimand for not following the expectations of their ancestors (Connolly & Gersch 2016; Mgbako & Glenn 2011). African mothers may seek counsel from an iSangoma (traditional healer) or iNyanga (herbalist) to understand autism (Madlala 2012), and those who seek to support them should respect these practices, viewing them as resources to enhance support.
African communities should facilitate a sense of belonging through the meaningful social inclusion of mothers and their children with autism. They can do this by eradicating stigma and discrimination associated with disability and difference (eds. Nsamenang & Tchombé 2012; Nussbaum 2013) and creating empowering conditions for children’s learning at home, at school and within their local communities (Murungi 2015). An Afrocentric perspective therefore holds promise for ‘seeing autism differently’ (Jansen 2020:iv) from a neurodiversity and differ-ability perspective (Clasquin-Johnson 2020b:17).
This exploratory study adopted a qualitative research approach (Choy 2014; Creswell 2014; McMillan & Schumacher 2014), to gain a better understanding of mothers’ experiences of their children’s diagnosis of autism. This enabled the authors to answer the main research question, ‘When children are diagnosed with autism, how do their mothers experience the process?’ The qualitative approach allowed for flexibility and increased participants’ freedom during the interviews (Maxwell & Saldaña 2014; Miles, Huberman & Saldaña 2014) to describe their experiences in as much detail as they chose. In addition, the semi-structured interviews were flexible and allowed the participants to share ‘complex and deep issues’ (Cohen, Manion & Morrison 2018:506) related to their experiences of their children’s autism diagnosis.
The population of the study was mothers of children diagnosed with autism who were enrolled at a special school near Durban, KwaZulu-Natal. Purposive sampling was employed to obtain rich data related to mothers’ experiences of their children’s autism diagnoses in greater depth (ed. Given 2012). The mothers who granted informed consent and who volunteered to participate in the study were between the ages of 32 and 48 years, and their children were between the ages of 7 and 9. Prior to the interviews, each participant received a handwritten letter from the first author detailing the nature and purpose of the study. Table 1 outlines the profile of the twelve mothers who participated in this study.
Source: Manono, M.N., 2022, How mothers respond to autism diagnoses and navigate early intervention and support. Unpublished M Ed Dissertation. Pretoria: University of South Africa
During data collection, which was conducted in 2021, the authors complied with strict COVID-19 restrictions and protocols. Individual semistructured, in-depth interviews were conducted with the participants in their preferred language, either English or isiZulu, through telephone interviews that were audio-recorded and later transcribed verbatim and translated into English where necessary. The semistructured interviews allowed for an open, in-depth discussion on the 12 mothers’ experiences of the three phases of diagnosis. The first author put the mothers at ease and obtained their consent and trust before proceeding with the interviews, as recommended by Cohen et al. (2018). To ensure consistency, a semistructured interview scheduled was followed. The questions were developed according to the main research question and related research subquestions, aimed at gaining a deeper understanding of mothers’ experiences during each of the three phases of the diagnostic process.
The authors relied on thematic analysis to analyse the data, focusing on recognising, evaluating and identifying patterns within the data according to the six steps proposed by Braun and Clarke (2021). To familiarise themselves with the data, the authors repeatedly read each participant’s transcribed and translated interview and assigned initial codes. This was followed by searching for possible themes, keeping the seven concepts related to Afrocentricity and the implications of IKS in mind. Thereafter, the authors carefully reviewed and refined the emerging themes and then defined and named them. Finally, the authors compiled a research report on the findings of the study. In addition, to ensure trustworthiness, the authors followed Denzin and Lincoln’s (2018) recommendations for credibility, dependability, transferability and confirmability of the study.
When inviting the 12 mothers to participate in the study, M.N.M. explained that there was a possibility that their participation in the study could cause distress related to sharing their past experiences of the process of their children’s diagnosis of autism (Rudestam & Newton 2015). The participants were advised of the availability of counselling by the school psychologist free of charge if the interview became too stressful (Ratcliff 2015). None of the participants took up this offer. Participants were further advised that they could withdraw from the study at any time without penalties. Throughout data collection, there was a great awareness of the need to remain respectful and compassionate when interacting with the 12 participants to advance their human rights and social justice, which the authors strive for in the field of inclusive education.
In the context of the current study, autism diagnosis is a complex process that does not occur exclusively within the medical model of disability. The 12 participants held strong cultural and religious beliefs which influenced their experience of the process in all three phases, leading them to explore all avenues at their disposal, whether medical or traditional, and all forms of possible support. While Dougherty et al. (2016) contend that mothers who wait a long time for a diagnosis tend to lose confidence in the health care system and turn to traditional healers, this was not the case. Instead, the mothers combined the medical process with IKS and religion by seeking counsel from iSangoma or iNyanga (Madlala 2012) and/or Christian worship. Several mothers stated that their most urgent question was whether their children’s autism was attributable to bewitchment or their ancestors’ displeasure (cf. Connolly & Gersch 2016). The respondents did not necessarily refer to the concept of ubuntu directly; in fact, the data points to an impression that they experienced a lack of it. They found themselves isolated, without family, community or social acceptance, barring the occasional relative, colleague or friend. Instead, some were urged to find a boarding school since the community regarded autism as an illness to be cured and blamed the mother for the child’s challenges. Furthermore, the absence of coordinated collaboration among the different stakeholders increased mothers’ distress.
The mothers were intrinsically and extrinsically motivated to seek a diagnosis because their children’s behaviour affected their acceptance within their communities (Shattnawi et al. 2021). This led to confusion and uncertainty prior to diagnosis (DePape & Lindsay 2015; Lopez et al. 2018; Lovelace et al. 2018). They turned to elders in their families for moral support and guidance when they noticed their children’s atypical behaviours and developmental delays. Although Mother 1 self-identified as a ‘first-time mother’, she recognised that her son was ‘not developing at the normal pace’. The mothers’ experiences were consistent with Teague et al.’s (2017) findings related to mothers’ fears of stigmatisation. These mothers were largely excluded from the benefits of collective wisdom and community support networks (Dolamo 2014). In many instances, those to whom they turned failed to provide social support by disregarding the interconnectedness of their reactions to the mothers’ hardships. This challenges the Afrocentric perspective and suggests that this model requires adjustment.
It is also significant that all but one of the 12 mothers were raising their children without the daily presence of their children’s fathers. Consistent with the findings of Lovelace et al. (2018) and Papadopoulos (2021), five of the mothers reported that their children’s autism diagnoses had adversely affected their marital relationships, which had ‘drifted apart’. Despite being absent, the children’s fathers’ negative comments appeared to increase the mothers’ anxiety, motivating them to seek a diagnosis. The mothers were responsible for executing the fathers’ advice; for example, Mother 1 recalled that her child’s father asked her to ‘do all the rituals required for his surname, so I took him to his father’s family for all that to be done’. The authors, therefore conclude that the lack of fathers’ involvement conflicts with the notion that ‘it takes a village to raise a child’, although they played a key role in reinforcing cultural beliefs and practices. The authors intend to explore these gender issues in a later publication.
As noted by Weiss et al. (2016), professionals should provide appropriate support to reduce mothers’ anxiety and stress. Many of the health care professionals with whom the mothers interacted appeared to be unfamiliar with the characteristics of autism (as in the case of the therapist who initially suggested ADHD) and failed to prepare mothers for the possibility and implications of an autism diagnosis. The Zulu cultural emphasis on ‘umuntu umuntu ngabantu’ (meaning you are because others are), applies to the crucial role of health care professionals. While this is aligned to Afrocentrism, it is also firmly recommended in the international scholarship (Lord et al. 2018; Wayment et al. 2019). In these mothers’ experience, most health care professionals were unable to explain autism terminology (in particular, to give it a name in isiZulu) or provide information related to therapeutic and educational interventions as recommended by Crane et al. (2016) and Webb et al. (2014). The most direct expression of this was by Mother 7: ‘I didn’t know what to do because nobody guided me on what the next step was and that was frustrating’.
Several mothers pointed out that healthcare professionals lacked compassion because they could not relate to the mothers’ struggles. Their lack of empathy suggests that the health care professionals involved in diagnosis had not received adequate training on how to communicate a diagnosis as recommended by Hoogsteen and Woodgate (2013). Since many of the mothers were not treated with respect and compassion, nor were they provided with information that framed autism positively, they were dissatisfied with the process (Lord et al. 2018).
Consistent with Lovelace et al.’s (2018) findings, some mothers expressed relief to finally obtain a diagnosis after a frustrating, lengthy and stressful process because it gave a name for their child’s challenges, even though it failed to provide direction. It is also worth noting that all 12 mothers were dependent on the public health system, but the diagnosis process in the private health system is as lengthy because of a shortage of qualified personnel, and it is equally without direction (Clasquin-Johnson & Clasquin-Johnson 2018) but much more costly.
Mothers’ reactions to their children’s autism diagnoses have been identified as a key factor influencing their children’s long-term outcomes (Lord et al. 2018). For this reason, mothers need to receive appropriate care and support, particularly since they are expected to be at the centre of their children’s intervention. As previously noted, prior to the children’s diagnoses, all but one of the mothers had limited prior knowledge of autism. They were unprepared for the shock of the diagnosis and experienced a general lack of autism awareness within their families, and communities. While four mothers received support from family members, neighbours and colleagues, this was uncommon. Several mothers described that animal sacrifices were frequently made within their families to heal both the child and the mother.
When the mothers in this study sought religious support, the focus was placed on ‘healing’ rather than understanding their children’s challenges and support needs. At the African-initiated Christian churches to which most of the participants belonged, disability was viewed as a condition that required healing (cf. Amanze 2019). Despite this conflict between the religious and the medical positions, the churches became an important avenue of psychological and emotional support for the mothers. This is consistent with the recommendations of Muir and Strnadová (2014), as well as Oprea and Stan (2012), as it gave them hope for their children’s future.
All 12 mothers became increasingly resilient as they educated themselves on the meaning of their children’s autism diagnoses (cf. Marsh et al. 2017). Only one mother seemed to be aware of Autism South Africa, a national nongovernmental organisation that promotes autism awareness, and pose questions about autism to them via e-mail. Three mothers described how they conducted Google searches to learn more about autism. This is consistent with the literature that following the children’s diagnoses, the mothers were determined to learn as much as possible about autism (Kiami & Goodgold 2017). Consequently, all 12 mothers managed to enrol their children at an appropriate special school that accommodated children with autism.
Although this study was conducted in KwaZulu-Natal and the participants were 12 Zulu mothers of children diagnosed with autism, it has raised awareness about the urgent need for culturally appropriate support for all persons diagnosed with ASD. Autism should be destigmatised through autism awareness programmes, targeting all stakeholders, including health, education, traditional, cultural and religious organisations, with useful information on the nature of autism, as well as how to access educational and therapeutic intervention and support within local communities (Hoogsteen & Woodgate 2013; Webb et al. 2014). This study reinforced the crucial role of community-based religious and cultural organisations in providing appropriate support to mothers and their children diagnosed with autism, aligned to the values of ubuntu, social support, culture, tradition, interpersonal relationships, interconnectedness and continuity (Majoko 2020; Mkabela 2015).
South Africa needs a systemic approach to autism diagnosis (Clasquin-Johnson & Clasquin-Johnson 2018), in which all the relevant stakeholders should be involved. This will ensure that mothers and their children derive the maximum benefit from autism interventions that respect religious and cultural diversity. In the short term, professionals at the frontline of the medical diagnosis process, as well as those at the frontline of cultural, traditional and religious support structures and institutions, require training on the characteristics of autism and the presentation of diagnosis, as they are vital in providing pre-, during- and post-diagnosis support to mothers and their children.

Sections

"[{\"pmc\": \"PMC10091053\", \"pmid\": \"\", \"reference_ids\": [\"CIT0002\", \"CIT0073\", \"CIT0034\", \"CIT0058\", \"CIT0069\", \"CIT0002\", \"CIT0064\"], \"section\": \"Introduction\", \"text\": \"Autism spectrum disorder (ADS), or autism, is a complex, lifelong neurodevelopmental disorder characterised by difficulties related to social understanding and communication, repetitive or restricted behaviours and interests, as well as challenges related to adaptive functioning (American Psychiatric Association [APA] 2013). Zeidan et al. (2022) estimate that one out of one hundered children are diagnosed with ASD worldwide. Autism has been diagnosed in all races, ethnic and socio-economic groups and appears to be more prevalent in boys than girls (Kasari, Sturm & Shi 2018). The diagnosis of autism includes an evaluation of intellectual and language barriers to learning (Pillay & Brownlow 2017; Tonnsen et al. 2016). Scientists believe that both genetic and environmental factors are likely to play a role in autism (APA 2013; Sauer et al. 2021).\"}, {\"pmc\": \"PMC10091053\", \"pmid\": \"\", \"reference_ids\": [\"CIT0027\", \"CIT0066\", \"CIT0070\"], \"section\": \"Introduction\", \"text\": \"In this article, the authors illuminate the complex journeys of South African mothers whose children received an ASD diagnosis. While their experiences resemble maternal experiences globally, the authors seek to understand their lived experiences from an Afrocentric perspective, since existing scholarship confirms that early diagnosis combined with appropriate intervention leads to improved developmental and family outcomes (Farooq & Ahmed 2020). Mothers experience challenges caused by their child\\u2019s behaviour, influencing both mother and child\\u2019s acceptance within their communities (Shattnawi et al. 2021). Mothers\\u2019 challenges are associated with adverse psychosocial impacts because of their perceptions of loss, being judged by others, a lack of social support and personal distress (Wayment, Al-Kire & Brookshire 2019).\"}, {\"pmc\": \"PMC10091053\", \"pmid\": \"\", \"reference_ids\": [\"CIT0037\", \"CIT0037\"], \"section\": \"Introduction\", \"text\": \"The family\\u2019s reactions to the child\\u2019s autism diagnosis have been identified as a major factor affecting long-term outcomes (Lord et al. 2018:3). Consequently, Lord et al. (2018) recommend that family members should be empowered with information related to resources and next steps when the autism diagnosis is communicated by healthcare professionals who are specially trained to do so.\"}, {\"pmc\": \"PMC10091053\", \"pmid\": \"\", \"reference_ids\": [\"CIT0014\", \"CIT0020\", \"CIT0036\", \"CIT0017\", \"CIT0020\", \"CIT0038\", \"CIT0043\"], \"section\": \"Introduction\", \"text\": \"Autism diagnosis frequently occurs after a lengthy, costly and stressful process (Clasquin-Johnson & Clasquin-Johnson 2018). Upon confirmation of an autism diagnosis, mothers may experience a range of emotions including shock, guilt and relief (DePape & Lindsay 2015; Lopez et al. 2018). Researchers characterise mothers\\u2019 experiences as a complex journey accompanied by mixed emotions (Crane et al. 2016; DePape & Lindsay 2015). While mothers are partly relieved to receive a diagnosis, they are also overwhelmed by the lifelong implications of autism (Lovelace, Robertson & Tamayo 2018). Over time, mothers\\u2019 feelings of guilt and anxiety decline, and they become increasingly resilient and empowered as their understanding of the meaning of their children\\u2019s autism diagnosis deepens (Marsh et al. 2017).\"}, {\"pmc\": \"PMC10091053\", \"pmid\": \"\", \"reference_ids\": [\"CIT0017\", \"CIT0071\", \"CIT0032\", \"CIT0071\", \"CIT0024\"], \"section\": \"Introduction\", \"text\": \"A study of 1000 mothers\\u2019 experiences of autism diagnoses in the United States of America revealed that mothers were more satisfied if: (1) there was a shorter time lag between initially seeking help and receiving a diagnosis, (2) diagnosis was received at a young age, (3) quality information on autism accompanied the diagnosis, (4) the professional who communicated the diagnosis framed autism in a positive manner and (5) they perceived intervention and support as accessible (Crane et al. 2016). Similarly, Webb et al. (2014) found that mothers tend to be more satisfied when their children are diagnosed during their early years. In addition, if mothers receive information on the nature of autism as well as how and where to access appropriate support, they are more satisfied with the diagnosis (Hoogsteen & Woodgate 2013; Webb et al. 2014). In contrast, if the process of obtaining a diagnosis is protracted, mothers may turn to alternative treatments such as dietary therapies and traditional healers, because of their reduced confidence in the healthcare professionals involved (Dougherty et al. 2016).\"}, {\"pmc\": \"PMC10091053\", \"pmid\": \"\", \"reference_ids\": [\"CIT0038\", \"CIT0056\", \"CIT0068\"], \"section\": \"Introduction\", \"text\": \"International studies have found that because of their caregiving burden, many mothers of children with autism experience high levels of psychological distress, health-related problems, lower levels of resilience and difficulties in family life, including marital and sibling relationships and family socialisation (Lovelace et al. 2018; Papadopoulos 2021). Some mothers experience chronic sadness and depression because of their children\\u2019s social and communication difficulties and challenging behaviour, which leads to self-accusation and negative attitudes towards life (Tekinarslan 2018).\"}, {\"pmc\": \"PMC10091053\", \"pmid\": \"\", \"reference_ids\": [\"CIT0050\", \"CIT0055\", \"CIT0032\"], \"section\": \"Introduction\", \"text\": \"Consequently, researchers have sought to identify protective factors for mothers of children diagnosed with autism (Muir & Strnadov\\u00e1 2014). Hope has been identified as a shielding or protective factor, as feeling hopeful reduces anxiety (Oprea & Stan 2012). In addition, when professionals establish a good rapport with mothers, their level of satisfaction increases, especially if mothers feel respected and included in decisions that benefit their children (Hoogsteen & Woodgate 2013).\"}, {\"pmc\": \"PMC10091053\", \"pmid\": \"\", \"reference_ids\": [\"CIT0025\", \"CIT0031\", \"CIT0048\", \"CIT0006\", \"CIT0026\"], \"section\": \"Introduction\", \"text\": \"In South Africa, there is a dearth of research on mothers\\u2019 experiences of the diagnosis of autism, although a few studies have focused on mothers\\u2019 experiences of their children\\u2019s diagnosis of a disability (Duma, Tshabalala & Mji 2021; Gow, Mostert & Dreyer 2020; Mkabile & Swartz 2020). It has also been noted that \\u2018There are no official statistics available on the prevalence of ASD among children in LMICs [low- and middle-income countries], including SA\\u2019 (Bakare & Munir 2011, cited in Erasmus et al. 2022:57). Consequently, most of the literature is from developed country contexts. This is the gap that this study aims to address. In this article, the authors will focus on mothers\\u2019 experiences prior, during and following their children\\u2019s diagnoses of autism.\"}, {\"pmc\": \"PMC10091053\", \"pmid\": \"\", \"reference_ids\": [\"CIT0004\", \"CIT0047\", \"CIT0061\", \"CIT0005\", \"CIT0008\", \"CIT0041\", \"CIT0047\", \"CIT0023\", \"CIT0028\"], \"section\": \"Theoretical approach\", \"text\": \"Asante (1983) defines Afrocentricity as ideas and actions shaped by African values, interests and perspectives. It promotes an appreciation for African identity and culture (Mkabela 2015; Richman 2018). The goal of Afrocentricity is to resituate African people \\u2018historically, economically, socially, politically, and philosophically\\u2019 (Asante 2003:3). This study was informed by Afrocentricity and the philosophy of ubuntu, which features concepts such as social support, culture, tradition, interpersonal relationships, spiritual interconnectedness and continuity. Ubuntu illuminates an African ethos, beliefs, experiences and aspirations (Bolden 2014; Majoko 2020; Mkabela 2015). These concepts should not be viewed as separate; rather, they are closely related, as they emphasise interconnectedness and reciprocity (Dolamo 2014; Gade 2015).\"}, {\"pmc\": \"PMC10091053\", \"pmid\": \"\", \"reference_ids\": [\"CIT0049\", \"CIT0065\", \"CIT0023\", \"CIT0010\", \"CIT0028\"], \"section\": \"Theoretical approach\", \"text\": \"These concepts guided our data analysis and deepened our insights into mothers\\u2019 experiences from a communal and contextual perspective (Mkhize & Ndimande-Hlongwa 2014; Schiele, Gottschalk & Domschke 2020). According to African cultural values, anyone who experiences hardships should be treated with respect, receive support and be protected from marginalisation (Dolamo 2014). All children should benefit from shared wisdom and community networks of support, because the entire village (community) is responsible for raising all its children (Chaplin 2013; Gade 2015).\"}, {\"pmc\": \"PMC10091053\", \"pmid\": \"\", \"reference_ids\": [\"CIT0007\", \"CIT0003\", \"CIT0052\", \"CIT0012\"], \"section\": \"Theoretical approach\", \"text\": \"Human understanding is related to epistemology (ways of knowing) entrenched in culture (Baloyi 2015). In addition, African indigenous knowledge systems (IKS) formed a central element of this research (Asante 1987; Muwanga-Zake 2010). This compels the authors to question whether to approach autism from the dominant medical perspective of disability and a disease to be cured, or from a social inclusion perspective where the emphasis is on acceptance of diversity and the provision of support. The authors agree with the sentiments of Clasquin-Johnson (2020a:249), who explored African perspectives on autism, noting that:\"}, {\"pmc\": \"PMC10091053\", \"pmid\": \"\", \"reference_ids\": [\"CIT0007\", \"CIT0016\", \"CIT0045\", \"CIT0040\"], \"section\": \"Theoretical approach\", \"text\": \"The authors need to explore how connectedness, spirituality and traditional practices (Baloyi 2015) could play a supportive role for mothers and their children. In relation to this study, mothers may question what caused their child to have autism and may attribute autism to bewitchment or a reprimand for not following the expectations of their ancestors (Connolly & Gersch 2016; Mgbako & Glenn 2011). African mothers may seek counsel from an iSangoma (traditional healer) or iNyanga (herbalist) to understand autism (Madlala 2012), and those who seek to support them should respect these practices, viewing them as resources to enhance support.\"}, {\"pmc\": \"PMC10091053\", \"pmid\": \"\", \"reference_ids\": [\"CIT0053\", \"CIT0054\", \"CIT0051\", \"CIT0033\", \"CIT0013\"], \"section\": \"Theoretical approach\", \"text\": \"African communities should facilitate a sense of belonging through the meaningful social inclusion of mothers and their children with autism. They can do this by eradicating stigma and discrimination associated with disability and difference (eds. Nsamenang & Tchomb\\u00e9 2012; Nussbaum 2013) and creating empowering conditions for children\\u2019s learning at home, at school and within their local communities (Murungi 2015). An Afrocentric perspective therefore holds promise for \\u2018seeing autism differently\\u2019 (Jansen 2020:iv) from a neurodiversity and differ-ability perspective (Clasquin-Johnson 2020b:17).\"}, {\"pmc\": \"PMC10091053\", \"pmid\": \"\", \"reference_ids\": [\"CIT0011\", \"CIT0018\", \"CIT0039\", \"CIT0044\", \"CIT0046\", \"CIT0015\"], \"section\": \"Research methods and design\", \"text\": \"This exploratory study adopted a qualitative research approach (Choy 2014; Creswell 2014; McMillan & Schumacher 2014), to gain a better understanding of mothers\\u2019 experiences of their children\\u2019s diagnosis of autism. This enabled the authors to answer the main research question, \\u2018When children are diagnosed with autism, how do their mothers experience the process?\\u2019 The qualitative approach allowed for flexibility and increased participants\\u2019 freedom during the interviews (Maxwell & Salda\\u00f1a 2014; Miles, Huberman & Salda\\u00f1a 2014) to describe their experiences in as much detail as they chose. In addition, the semi-structured interviews were flexible and allowed the participants to share \\u2018complex and deep issues\\u2019 (Cohen, Manion & Morrison 2018:506) related to their experiences of their children\\u2019s autism diagnosis.\"}, {\"pmc\": \"PMC10091053\", \"pmid\": \"\", \"reference_ids\": [\"CIT0029\", \"T0001\"], \"section\": \"Study population and sampling strategy\", \"text\": \"The population of the study was mothers of children diagnosed with autism who were enrolled at a special school near Durban, KwaZulu-Natal. Purposive sampling was employed to obtain rich data related to mothers\\u2019 experiences of their children\\u2019s autism diagnoses in greater depth (ed. Given 2012). The mothers who granted informed consent and who volunteered to participate in the study were between the ages of 32 and 48 years, and their children were between the ages of 7 and 9. Prior to the interviews, each participant received a handwritten letter from the first author detailing the nature and purpose of the study. Table 1 outlines the profile of the twelve mothers who participated in this study.\"}, {\"pmc\": \"PMC10091053\", \"pmid\": \"\", \"reference_ids\": [\"CIT0042\"], \"section\": \"\", \"text\": \"Source: Manono, M.N., 2022, How mothers respond to autism diagnoses and navigate early intervention and support. Unpublished M Ed Dissertation. Pretoria: University of South Africa\"}, {\"pmc\": \"PMC10091053\", \"pmid\": \"\", \"reference_ids\": [\"CIT0015\"], \"section\": \"Data collection\", \"text\": \"During data collection, which was conducted in 2021, the authors complied with strict COVID-19 restrictions and protocols. Individual semistructured, in-depth interviews were conducted with the participants in their preferred language, either English or isiZulu, through telephone interviews that were audio-recorded and later transcribed verbatim and translated into English where necessary. The semistructured interviews allowed for an open, in-depth discussion on the 12 mothers\\u2019 experiences of the three phases of diagnosis. The first author put the mothers at ease and obtained their consent and trust before proceeding with the interviews, as recommended by Cohen et al. (2018). To ensure consistency, a semistructured interview scheduled was followed. The questions were developed according to the main research question and related research subquestions, aimed at gaining a deeper understanding of mothers\\u2019 experiences during each of the three phases of the diagnostic process.\"}, {\"pmc\": \"PMC10091053\", \"pmid\": \"\", \"reference_ids\": [\"CIT0009\", \"CIT0019\"], \"section\": \"Data analysis\", \"text\": \"The authors relied on thematic analysis to analyse the data, focusing on recognising, evaluating and identifying patterns within the data according to the six steps proposed by Braun and Clarke (2021). To familiarise themselves with the data, the authors repeatedly read each participant\\u2019s transcribed and translated interview and assigned initial codes. This was followed by searching for possible themes, keeping the seven concepts related to Afrocentricity and the implications of IKS in mind. Thereafter, the authors carefully reviewed and refined the emerging themes and then defined and named them. Finally, the authors compiled a research report on the findings of the study. In addition, to ensure trustworthiness, the authors followed Denzin and Lincoln\\u2019s (2018) recommendations for credibility, dependability, transferability and confirmability of the study.\"}, {\"pmc\": \"PMC10091053\", \"pmid\": \"\", \"reference_ids\": [\"CIT0063\", \"CIT0059\"], \"section\": \"Ethical considerations\", \"text\": \"When inviting the 12 mothers to participate in the study, M.N.M. explained that there was a possibility that their participation in the study could cause distress related to sharing their past experiences of the process of their children\\u2019s diagnosis of autism (Rudestam & Newton 2015). The participants were advised of the availability of counselling by the school psychologist free of charge if the interview became too stressful (Ratcliff 2015). None of the participants took up this offer. Participants were further advised that they could withdraw from the study at any time without penalties. Throughout data collection, there was a great awareness of the need to remain respectful and compassionate when interacting with the 12 participants to advance their human rights and social justice, which the authors strive for in the field of inclusive education.\"}, {\"pmc\": \"PMC10091053\", \"pmid\": \"\", \"reference_ids\": [\"CIT0024\", \"CIT0040\", \"CIT0016\"], \"section\": \"Discussion\", \"text\": \"In the context of the current study, autism diagnosis is a complex process that does not occur exclusively within the medical model of disability. The 12 participants held strong cultural and religious beliefs which influenced their experience of the process in all three phases, leading them to explore all avenues at their disposal, whether medical or traditional, and all forms of possible support. While Dougherty et al. (2016) contend that mothers who wait a long time for a diagnosis tend to lose confidence in the health care system and turn to traditional healers, this was not the case. Instead, the mothers combined the medical process with IKS and religion by seeking counsel from iSangoma or iNyanga (Madlala 2012) and/or Christian worship. Several mothers stated that their most urgent question was whether their children\\u2019s autism was attributable to bewitchment or their ancestors\\u2019 displeasure (cf. Connolly & Gersch 2016). The respondents did not necessarily refer to the concept of ubuntu directly; in fact, the data points to an impression that they experienced a lack of it. They found themselves isolated, without family, community or social acceptance, barring the occasional relative, colleague or friend. Instead, some were urged to find a boarding school since the community regarded autism as an illness to be cured and blamed the mother for the child\\u2019s challenges. Furthermore, the absence of coordinated collaboration among the different stakeholders increased mothers\\u2019 distress.\"}, {\"pmc\": \"PMC10091053\", \"pmid\": \"\", \"reference_ids\": [\"CIT0066\", \"CIT0020\", \"CIT0036\", \"CIT0038\", \"CIT0067\", \"CIT0023\"], \"section\": \"Theme 1: Mothers\\u2019 experiences prior to diagnosis\", \"text\": \"The mothers were intrinsically and extrinsically motivated to seek a diagnosis because their children\\u2019s behaviour affected their acceptance within their communities (Shattnawi et al. 2021). This led to confusion and uncertainty prior to diagnosis (DePape & Lindsay 2015; Lopez et al. 2018; Lovelace et al. 2018). They turned to elders in their families for moral support and guidance when they noticed their children\\u2019s atypical behaviours and developmental delays. Although Mother 1 self-identified as a \\u2018first-time mother\\u2019, she recognised that her son was \\u2018not developing at the normal pace\\u2019. The mothers\\u2019 experiences were consistent with Teague et al.\\u2019s (2017) findings related to mothers\\u2019 fears of stigmatisation. These mothers were largely excluded from the benefits of collective wisdom and community support networks (Dolamo 2014). In many instances, those to whom they turned failed to provide social support by disregarding the interconnectedness of their reactions to the mothers\\u2019 hardships. This challenges the Afrocentric perspective and suggests that this model requires adjustment.\"}, {\"pmc\": \"PMC10091053\", \"pmid\": \"\", \"reference_ids\": [\"CIT0038\", \"CIT0056\"], \"section\": \"Theme 1: Mothers\\u2019 experiences prior to diagnosis\", \"text\": \"It is also significant that all but one of the 12 mothers were raising their children without the daily presence of their children\\u2019s fathers. Consistent with the findings of Lovelace et al. (2018) and Papadopoulos (2021), five of the mothers reported that their children\\u2019s autism diagnoses had adversely affected their marital relationships, which had \\u2018drifted apart\\u2019. Despite being absent, the children\\u2019s fathers\\u2019 negative comments appeared to increase the mothers\\u2019 anxiety, motivating them to seek a diagnosis. The mothers were responsible for executing the fathers\\u2019 advice; for example, Mother 1 recalled that her child\\u2019s father asked her to \\u2018do all the rituals required for his surname, so I took him to his father\\u2019s family for all that to be done\\u2019. The authors, therefore conclude that the lack of fathers\\u2019 involvement conflicts with the notion that \\u2018it takes a village to raise a child\\u2019, although they played a key role in reinforcing cultural beliefs and practices. The authors intend to explore these gender issues in a later publication.\"}, {\"pmc\": \"PMC10091053\", \"pmid\": \"\", \"reference_ids\": [\"CIT0072\", \"CIT0037\", \"CIT0070\", \"CIT0017\", \"CIT0071\"], \"section\": \"Theme 2: Mothers\\u2019 experiences during the diagnosis process\", \"text\": \"As noted by Weiss et al. (2016), professionals should provide appropriate support to reduce mothers\\u2019 anxiety and stress. Many of the health care professionals with whom the mothers interacted appeared to be unfamiliar with the characteristics of autism (as in the case of the therapist who initially suggested ADHD) and failed to prepare mothers for the possibility and implications of an autism diagnosis. The Zulu cultural emphasis on \\u2018umuntu umuntu ngabantu\\u2019 (meaning you are because others are), applies to the crucial role of health care professionals. While this is aligned to Afrocentrism, it is also firmly recommended in the international scholarship (Lord et al. 2018; Wayment et al. 2019). In these mothers\\u2019 experience, most health care professionals were unable to explain autism terminology (in particular, to give it a name in isiZulu) or provide information related to therapeutic and educational interventions as recommended by Crane et al. (2016) and Webb et al. (2014). The most direct expression of this was by Mother 7: \\u2018I didn\\u2019t know what to do because nobody guided me on what the next step was and that was frustrating\\u2019.\"}, {\"pmc\": \"PMC10091053\", \"pmid\": \"\", \"reference_ids\": [\"CIT0032\", \"CIT0037\"], \"section\": \"Theme 2: Mothers\\u2019 experiences during the diagnosis process\", \"text\": \"Several mothers pointed out that healthcare professionals lacked compassion because they could not relate to the mothers\\u2019 struggles. Their lack of empathy suggests that the health care professionals involved in diagnosis had not received adequate training on how to communicate a diagnosis as recommended by Hoogsteen and Woodgate (2013). Since many of the mothers were not treated with respect and compassion, nor were they provided with information that framed autism positively, they were dissatisfied with the process (Lord et al. 2018).\"}, {\"pmc\": \"PMC10091053\", \"pmid\": \"\", \"reference_ids\": [\"CIT0038\", \"CIT0014\"], \"section\": \"Theme 2: Mothers\\u2019 experiences during the diagnosis process\", \"text\": \"Consistent with Lovelace et al.\\u2019s (2018) findings, some mothers expressed relief to finally obtain a diagnosis after a frustrating, lengthy and stressful process because it gave a name for their child\\u2019s challenges, even though it failed to provide direction. It is also worth noting that all 12 mothers were dependent on the public health system, but the diagnosis process in the private health system is as lengthy because of a shortage of qualified personnel, and it is equally without direction (Clasquin-Johnson & Clasquin-Johnson 2018) but much more costly.\"}, {\"pmc\": \"PMC10091053\", \"pmid\": \"\", \"reference_ids\": [\"CIT0037\"], \"section\": \"Theme 3: Mothers\\u2019 experiences following their children\\u2019s diagnosis\", \"text\": \"Mothers\\u2019 reactions to their children\\u2019s autism diagnoses have been identified as a key factor influencing their children\\u2019s long-term outcomes (Lord et al. 2018). For this reason, mothers need to receive appropriate care and support, particularly since they are expected to be at the centre of their children\\u2019s intervention. As previously noted, prior to the children\\u2019s diagnoses, all but one of the mothers had limited prior knowledge of autism. They were unprepared for the shock of the diagnosis and experienced a general lack of autism awareness within their families, and communities. While four mothers received support from family members, neighbours and colleagues, this was uncommon. Several mothers described that animal sacrifices were frequently made within their families to heal both the child and the mother.\"}, {\"pmc\": \"PMC10091053\", \"pmid\": \"\", \"reference_ids\": [\"CIT0001\", \"CIT0050\", \"CIT0055\"], \"section\": \"Theme 3: Mothers\\u2019 experiences following their children\\u2019s diagnosis\", \"text\": \"When the mothers in this study sought religious support, the focus was placed on \\u2018healing\\u2019 rather than understanding their children\\u2019s challenges and support needs. At the African-initiated Christian churches to which most of the participants belonged, disability was viewed as a condition that required healing (cf. Amanze 2019). Despite this conflict between the religious and the medical positions, the churches became an important avenue of psychological and emotional support for the mothers. This is consistent with the recommendations of Muir and Strnadov\\u00e1 (2014), as well as Oprea and Stan (2012), as it gave them hope for their children\\u2019s future.\"}, {\"pmc\": \"PMC10091053\", \"pmid\": \"\", \"reference_ids\": [\"CIT0043\", \"CIT0035\"], \"section\": \"Theme 3: Mothers\\u2019 experiences following their children\\u2019s diagnosis\", \"text\": \"All 12 mothers became increasingly resilient as they educated themselves on the meaning of their children\\u2019s autism diagnoses (cf. Marsh et al. 2017). Only one mother seemed to be aware of Autism South Africa, a national nongovernmental organisation that promotes autism awareness, and pose questions about autism to them via e-mail. Three mothers described how they conducted Google searches to learn more about autism. This is consistent with the literature that following the children\\u2019s diagnoses, the mothers were determined to learn as much as possible about autism (Kiami & Goodgold 2017). Consequently, all 12 mothers managed to enrol their children at an appropriate special school that accommodated children with autism.\"}, {\"pmc\": \"PMC10091053\", \"pmid\": \"\", \"reference_ids\": [\"CIT0032\", \"CIT0071\", \"CIT0041\", \"CIT0047\"], \"section\": \"Implications\", \"text\": \"Although this study was conducted in KwaZulu-Natal and the participants were 12 Zulu mothers of children diagnosed with autism, it has raised awareness about the urgent need for culturally appropriate support for all persons diagnosed with ASD. Autism should be destigmatised through autism awareness programmes, targeting all stakeholders, including health, education, traditional, cultural and religious organisations, with useful information on the nature of autism, as well as how to access educational and therapeutic intervention and support within local communities (Hoogsteen & Woodgate 2013; Webb et al. 2014). This study reinforced the crucial role of community-based religious and cultural organisations in providing appropriate support to mothers and their children diagnosed with autism, aligned to the values of ubuntu, social support, culture, tradition, interpersonal relationships, interconnectedness and continuity (Majoko 2020; Mkabela 2015).\"}, {\"pmc\": \"PMC10091053\", \"pmid\": \"\", \"reference_ids\": [\"CIT0014\"], \"section\": \"Implications\", \"text\": \"South Africa needs a systemic approach to autism diagnosis (Clasquin-Johnson & Clasquin-Johnson 2018), in which all the relevant stakeholders should be involved. This will ensure that mothers and their children derive the maximum benefit from autism interventions that respect religious and cultural diversity. In the short term, professionals at the frontline of the medical diagnosis process, as well as those at the frontline of cultural, traditional and religious support structures and institutions, require training on the characteristics of autism and the presentation of diagnosis, as they are vital in providing pre-, during- and post-diagnosis support to mothers and their children.\"}]"

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