1 Raising a child with autism spectrum disorder: Black South African parents’ reported lived experiences Student Name: Ogone Magape Student Number: 1852699 Supervisor: Dr Clare Harvey A research proposal submitted in partial fulfilment of the requirements for the degree of BA Masters (Clinical Psychology) in the Faculty of Humanities, University of the Witwatersrand, Johannesburg. 2 Declaration I declare that this research report is my own, unaided work. It is submitted for the degree of Master of Arts in Clinical Psychology at the University of the Witwatersrand, Johannesburg. It has not been submitted before for any degree or examination at any other university. __ _________________________ Ogone Magape _____28/01/2025_____________________ Date 3 Acknowledgements I would firstly like to thank God the almighty, by whose mercy and blessings I was able to complete this research project despite all the challenges. To my supervisor, Clare Harvey, thank you for taking me through this process and for sharing your knowledge and wisdom with me. Your kindness, passion and patience was motivating to no end. To my family thank you for all your love, encouragement and support throughout this time in my life. Your support and prayers have really carried me. I am because you are. To my friends, thank you for believing and always supporting me. I would like to thank parents that participated in the study and shared their experiences, if it wasn’t for your participation, this project couldn’t have been complete. 4 Abstract Autism Spectrum Disorder (ASD) is increasingly becoming a significant public health concern in developing countries, particularly in South Africa, where cultural factors significantly affect perceptions and diagnoses of ASD. This presents challenges for early identification and support. Parenting a child with ASD brings considerable physical, emotional, social, and financial challenges. To understand the impact of raising a child with ASD on parents, a qualitative research design was implemented, utilising semi-structured interviews for data collection. A total of six interviews were conducted for this study, focusing on the experiences of black South African parents raising children with ASD. The study aimed to explore the experiences of black South African parents raising children with ASD, focusing on their beliefs and social experiences, as well as the impact on family dynamics. Findings revealed significant gaps in knowledge about ASD, which impeded early identification and management. Parents experienced long waits for diagnoses and often turned to traditional healers for understanding. The study indicated that raising a child with ASD impacts interpersonal relationships, particularly emphasising gender roles where men felt pressured to be emotionally strong for their partners, resulting in difficulty expressing their feelings. Financial strain was a common challenge reported by all parents. Research findings of the current study revealed that increased awareness of ASD in black South African communities is crucial. Psychoeducation could empower parents, counter misconceptions, reduce stigma, and enhance support systems. Additionally, there is a pressing need for healthcare professionals to provide more comprehensive care and understanding of ASD implications for families. Expanding the number of ASD-specialised healthcare professionals in South Africa is also essential. Keywords: ASD, culture, community awareness, parental experiences, socioeconomic factors 5 Table of contents Declaration ............................................................................................................................ 2 Acknowledgements ................................................................................................................ 3 Abstract ................................................................................................................................ 4 CHAPTER 1: INTRODUCTION AND RATIONALE ............................................................. 7 Research aims .................................................................................................................... 9 Research report outline ...................................................................................................... 9 CHAPTER 2: LITERATURE REVIEW ............................................................................... 10 Disability ......................................................................................................................... 10 Autism spectrum disorder and diagnostic features ............................................................. 11 Prevalence of autism spectrum disorders ........................................................................... 12 Development and course of autism spectrum disorder ....................................................... 12 Risk and prognostic factors of autism spectrum disorder ................................................... 13 Treatment for children with autism spectrum disorder ...................................................... 14 Parenting a child with autism spectrum disorder ............................................................... 16 Culture and autism spectrum disorders ............................................................................. 17 Grief and ASD diagnosis within the family ........................................................................ 19 Support systems ............................................................................................................... 20 Autism spectrum disorder knowledge among black African parents ................................... 21 Conclusion ....................................................................................................................... 22 CHAPTER 3: METHODOLOGY ........................................................................................ 23 Research design and paradigm ......................................................................................... 23 Sample and sampling ........................................................................................................ 23 Data collection method and procedure .............................................................................. 25 Data analysis .................................................................................................................... 26 Ethical considerations....................................................................................................... 27 Methodological Rigour ..................................................................................................... 27 Researcher reflexivity ....................................................................................................... 28 CHAPTER 4: RESEARCH FINDINGS ................................................................................ 30 Themes ............................................................................................................................ 30 1. Pre-diagnosis ........................................................................................................ 30 2. Diagnosis .............................................................................................................. 34 3. Post-diagnosis....................................................................................................... 40 Summary of results .......................................................................................................... 51 CHAPTER 5: DISCUSSION ................................................................................................ 53 1 .......................................................................................................................................... 53 6 1.1 Milestones ............................................................................................................ 53 1.2 Waiting period ..................................................................................................... 54 1.3 Lack of knowledge ................................................................................................ 54 2. Diagnosis ...................................................................................................................... 55 2.1 Receiving a diagnosis ............................................................................................... 55 2.2 Making sense of diagnosis ........................................................................................ 56 2.3 Cultural and religious contributions ......................................................................... 58 3. Post-diagnosis ............................................................................................................... 58 3.1 Family dynamics .................................................................................................. 58 3.2 Interpersonal relationships ...................................................................................... 59 3.3 Financial challenges ................................................................................................. 60 3.4 Culture and community ........................................................................................... 61 CHAPTER 6: CONCLUSION, LIMITATIONS AND RECOMMENDATIONS ..................... 63 LIMITATIONS OF THE STUDY ..................................................................................... 64 RECOMMENDATIONS .................................................................................................. 64 CLINICAL IMPLICATIONS ........................................................................................... 64 REFERENCES .................................................................................................................... 66 Appendix A: Ethics Certificate ............................................................................................. 73 Appendix B: Interview schedule ........................................................................................... 74 Appendix C: Letter of invitation ........................................................................................... 77 Appendix D: The participant information sheet .................................................................... 78 7 CHAPTER 1: INTRODUCTION AND RATIONALE Autism spectrum disorder is a lifelong neurodevelopmental disorder that is characterised by persistent deficits in reciprocal social communication and social interaction including impairments in nonverbal communication, and restricted and repetitive behaviour (American Psychiatric Association (APA), 2022). Autism spectrum disorder (ASD) is increasingly becoming a public health concern in developing countries (Pillay et al., 2022; Woodgate et al., 2015). However, there is limited knowledge about ASD particularly in Africa (Aderinto et al., 2023). Only recently has many developing countries begun to recognise and diagnose ASD (Wallace et al., 2012). Despite this recognition, there is still a lack of awareness, identification, and adequate services for people with ASD, and their parents in developing countries (Wallace et al., 2012). The identification and effective management of ASD remains a challenge in African communities due to the limited healthcare resources, restricted access to mental health services, and poverty (Aderinto et al., 2023). Furthermore, culture also influences how ASD is perceived and understood further making it challenging to generalise existing knowledge about ASD to the African context (Aderinto et al., 2023), which calls for more research to be conducted within the African context. Autism spectrum disorder is one of the most severe childhood disorders and has long term devastating effects on an individual’s functioning (Eapen et al., 2014; Fewster et al., 2020). The World Health Assembly drew up the WHA67.8 resolution in 2014 which calls governments to make comprehensive and coordinated measures to manage and improve the quality of life of children with ASD and their families (World Health Organisation (WHO), 2014). In a study that explored the perspectives of key government stakeholders in Western Cape, South Africa (SA), and their recommended solutions to meet the needs of children with ASD and their families, it was suggested that government and civil society work together to break down barriers and improve access to services for children with ASD (Pillay et al., 2022). Therefore, learning and understanding parents’ experiences may help to meet the WHA67.8 resolution, reduce barriers to access treatment, improve quality of treatment, as well as the quality of life of children with ASD and their parents. Raising a child with ASD has a significant impact on the individual, family, and society; however little research about ASD and how it affects family functioning has been conducted in SA. Therefore, to bridge the gap between evidence and practise, further research needs to be conducted within the South African context (Wilford, 2013). Furthermore, the focus of ASD 8 intervention tends to be on the child while the health and wellbeing of the primary caregiver or parent tends to be overlooked as part of the holistic management of the child (Fewster et al., 2020). Understanding the experiences of parents with a child with ASD may help in developing effective interventions aimed at improving the mental health and overall wellbeing of the parents. The improved overall wellbeing and quality of life of parents also enhance the potential of the child with ASD to achieve a better quality of life (Catalano et al., 2018). Research studies have indicated that there are racial and ethnic disparities in the recognition of intellectual and developmental disabilities with black children being identified less frequently in comparison to white children (Guler et al., 2017; Mandell et al., 2002; Mkabile & Swartz, 2020). Delays and discrepancies in the diagnosis of ASD may result from differences in parents’ knowledge and understanding of typical development across different racial, ethnic and socioeconomic status (Campbell et al., 2018). South Africa is a multicultural country with diverse indigenous understandings of illness. Therefore, there is a need for research that seeks to understand cultural understandings of ASD that goes beyond western understanding of ASD. Additionally, understanding parents' experiences can help reduce barriers to treatment and enhance its quality. Most research that has been conducted in the area of ASD is quantitative research studies which have shown that parents of children with neurodevelopmental disabilities are likely to experience more stress and parental challenges compared to parents of children without a disability (De Clercq et al., 2022). Children with ASD need more medical, educational, and social support compared to children without a disability (McCarty & Frye, 2020). This extra support oftentimes puts a financial strain on parents and affects the family’s quality of life (McCarty & Frye, 2020). Thus, the need for research studies such as the current study to further our understanding of the impact that raising a child with ASD has on parents. According to the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition, Text Revision (DSM-5-TR), it is understood that individuals diagnosed with the same mental disorder may not display identical behaviours (APA, 2022). Therefore, in this research paper, the term "ASD" will be used to refer to Autism Spectrum Disorder, recognising that it exists on a spectrum (APA, 2022). Additionally, the DSM-5-TR recommends avoiding stigmatising language (APA, 2022). Consequently, this research report will employ person-first language, referring to participants as "parents raising a child with ASD" rather than "parents raising an autistic child." This approach is adopted to mitigate the impact of medical labels on the 9 perception and inclusion of individuals with disabilities in society and to help prevent the perpetuation of stigma against those with mental health disorders or disabilities (Vidal et al., 2024). Research aims The primary aim of this research study was to explore the reported lived experiences of black South African parental caregivers who are raising a child with ASD. The intention was to explore these parents’ understandings and beliefs about ASD. The study also aimed to gain insight into these families and their social experiences, and how raising a child with ASD may impact their family dynamics and social relations. Research report outline This chapter has explored some of the challenges that developing countries face with regards to the diagnosis and treatment of ASD which includes lack of awareness, identification, and adequate services for children with ASD and their families. Furthermore, in a country such as South Africa culture influences how ASD is perceived, understood, and diagnosed, further making it challenging to generalise existing knowledge about ASD to the African context which further poses a challenge with regards to early identification and diagnosis of ASD (Aderinto et al., 2023). Research studies have shown that parents of children with neurodevelopmental disabilities are likely to experience more stress and parental challenges compared to parents of children without a disability (De Clercq et al., 2022). However, not much research has been conducted with regards to how raising a child with ASD affects parents including their familial and social relations as well as how black South Africans, in particular understand ASD. Therefore, the next chapter explores how disability is understood within African families, diagnostic features of ASD, its prevalence, development, and course, including risk and prognostic factors. It further explores treatment services for children with ASD, the experience of parenting a child with ASD, impact of culture in how ASD is understood, the familial grief associated with ASD diagnosis within the family, parents support systems, as well as ASD awareness and knowledge within black African communities. After that, chapter three details the methods of the project. In chapter four, the findings of the study are presented which includes themes from the data. Chapter five provides a discussion of the research findings. Chapter six concludes the thesis and discusses the implications of the research findings, limitations of the study as well as recommendations for future research. 10 CHAPTER 2: LITERATURE REVIEW Disability Over time various models of disability have been developed, and the two most common models of disability are the medical and social models. According to the medical model, disability is believed to be as a result of physical impairments that are a result of disease, injury, or health conditions, thus interventions tend to be primarily medical which include rehabilitation and institutional care (Palmer & Harley, 2011). The social model views disability as socially constructed and part of social life, thus placing emphasis on interaction and how society excludes people with disabilities (Palmer & Harley, 2011). The social model has been successful in de-medicalising and de-individualising disability; as a result, social change is perceived as the primary remedy for disability (Palmer & Harley, 2011). Both models have been criticised. The medical model has been criticised for not addressing how disability affects social participation, while the social model has been criticised for being dismissive of impairment (Palmer & Harley, 2011). Black South Africans believe in the spirit of ubuntu which is about shared humanity and interconnectedness and disability from this perspective can be understood as the ‘other’ that is different from what is perceived to be normal according to the shared societal norms (Berghs, 2017). Furthermore, in some cultures disability can also be understood from a spiritual realm whereby disability may be perceived as a curse, form of punishment, or bewitchment (Aderinto et al., 2023; Berghs, 2017). Thus, the need for research studies such as the current one to further our understanding on how ASD may be understood across different cultural backgrounds. The social model of disability has influenced the WHO’s definition of disability. The WHO’s (2021) policy on disability defined disability as “the outcome of the interaction between individuals with a health condition (e.g., cerebral palsy, Down syndrome or depression) and personal and environmental factors (e.g., negative attitudes, inaccessible transportation and public buildings, and limited social supports)” (p. 10). Persons with disability are defined as individuals with long-term physical, mental, intellectual, or sensory impairments which affect how they interact and participate in the society (WHO, 2021). Therefore, in this research study WHO’s definition of disability was used, since the study was interested in understanding parents’ experiences, including family and social relations, in raising a child with ASD and how they understand ASD. 11 Living with a child with a disability tends to affect family functioning which can have negative and positive effects. Furthermore, the extent to which an individual experiences disability in their daily life differs and is oftentimes dependent on how their impairment or health condition affects their interaction with society (WHO, 2021). Positively, raising a child with disability can make family members more aware of their inner strengths, enhance family cohesion, as well as promote and improve relations with community groups (Reichman et al., 2008). On the negative side, it can be straining financially, emotionally, physically, and time demanding, especially for parents (Reichman et al., 2008; Schlebusch & Dada, 2018). Majority of children when they grow up, tend to leave their parents, and become independent. However, for children with a disability their care tends to be life long, sometimes even after the death of their parents (Reichman et al., 2008). Those who cannot gain independence usually require enormous resources (Reichman et al., 2008). The term ‘disability’ tends to also carry a social stigma, and, in some African cultures disability may be seen as a curse or punishment which as a result may lead to under-reporting of disabilities or delay the process of families seeking a diagnosis or treatment for their child (Aderinto et al., 2023; Mkabile & Swartz, 2020; Schlebusch & Dada, 2018). This avoidance is often associated with fear of social stigma which may lead to isolation and discrimination. Autism spectrum disorder and diagnostic features Autism spectrum disorder is a lifelong neurodevelopmental disorder which is characterised by impairments in social settings, non-verbal and verbal communication deficits, and stereotypical repetitive behaviours (APA, 2022). Stereotypical repetitive behaviours may include inflexibility to change in routines, repetitive motor movements, strong attachments to unusual objects, repetitive speech, ritualized patterns of verbal or nonverbal behaviour and hyperactivity to sensory input (APA, 2022). The definition of ASD has evolved overtime. It was first defined in 1980 in the Diagnostic Statistical Manual of Mental Disorders (DSM) the third edition, it was then revised and divided into three subcategories in the DSM-IV, and it was redefined again in the DSM-5 as one disorder with a spectrum of severities (McCarty & Frye, 2020). Specific core features such as lack of social communication abilities, repetitive behaviours, and restrictive interests remained the same and have always been used to define ASD (APA, 2022). 12 According to the Diagnostic Statistical Manual of Mental Disorders Fifth Edition, Text Revised (DSM 5-TR) the features of ASD need to cause a clinically significant impairment in important functioning areas of an individual including social and occupational functioning to be diagnosed with ASD (APA,2022). Additionally, impairments must be marked based on the developmental level of the individual (APA, 2022). The DSM-5 is used as a diagnostic reference for ASD; however, it is not used as a formal test for ASD because it only provides the criterion for diagnosis of ASD (McCarty & Frye, 2020). Therefore, caregiver interviews, questionnaires and clinical observations are often used to diagnose ASD, and these are used together to improve the reliability of the diagnosis (APA, 2022). During the caregiver interview, the caregiver provides insights into the child’s developmental and behavioural symptoms (McCarty & Frye, 2020). Thus, it is important that parents’ experiences and their understanding of ASD are studied. Prevalence of autism spectrum disorders Over the past three decades the prevalence of ASD has significantly increased (McCarty & Frye, 2020). It is believed that 1 in 160 children worldwide are diagnosed with ASD (Fewster et al., 2020; Reddy et al., 2019; Wilford, 2013). Although in Africa the prevalence of ASD is still unknown, it is estimated that 2 percent of the population in SA has ASD (Reddy et al., 2019). In a retrospective review that consisted of 1010 medical records in 2013 it was projected that over 270,000 people in SA are living with ASD with 5000 new cases per year (Springer et al., 2013). The increasing prevalence of ASD may be linked to the increase of ASD awareness and research done in recent years as well as secular changes in the diagnostic practices and development of key diagnostic features of ASD (Wallace et al., 2012; Yoon et al., 2020). Factors such as misdiagnosis, delayed diagnosis or underdiagnosis of ASD particularly for individuals from some ethnoracial backgrounds may affect the reported prevalence of ASD (APA, 2022). However, the increasing number of ASD cases does call for more research to be conducted, particularly in SA. Majority of research that has been done on ASD stems from high income countries, however, there is limited research done in African countries, including SA (Viviers et al., 2020). Development and course of autism spectrum disorder According to global research, ASD is usually first diagnosed when the child is still an infant and during early childhood from as young as 18 months (McCarty & Frye, 2020). Autism 13 spectrum disorder usually emerges before the age of 3 years (Viviers et al., 2020). Moreover, symptoms of ASD usually become recognisable in the second year of life (APA, 2022). When developmental delays result in severe symptoms, they may become visible prior to the child turning one and in cases where symptoms are subtle, they may be noted later after the child has turned two years (APA, 2022). The pattern of onset description may include delays in social communication which would typically happen between 12 and 24 months (APA, 2022). It is however noted that it may be difficult to diagnose ASD at an early age as factors such as lack of social communication skills often emerge after the child has turned one (McCarty & Frye, 2020). Furthermore, some behaviours during early infancy are considered typical initially and only become atypical when they continue into later infancy or beyond (APA, 2022). Some abnormal behaviours such as repetitive and restrictive behaviours/interests may develop or become evident at a later stage when the disorder has already established (McCarty & Frye, 2020). Additionally, factors such as age, gender, and cultural norms should be understood and measured against typical developmental milestones when developing, maintaining, and understanding deficits associated with ASD (APA, 2022). Many people with ASD tend to have poor adult psychosocial functioning such as being able to live independently and gain employment (APA, 2022). However, some individuals particularly those with lower levels of impairment may be able to work independently, however, they may have problems with organising practical work independently (APA, 2022). Therefore, for individuals that may not be able to live independently this would mean that parents would need to continue caring for them, thus putting strain on parents. Risk and prognostic factors of autism spectrum disorder The etiological determinants of ASD are still unclear (Yoon et al., 2020). However, it is believed that genetic and environmental factors are associated with ASD. Genetic factors underlying ASD are believed to have a stronger association with ASD compared to environmental factors (Yoon et al., 2020). This was shown in a twin study with monozygotic twins having a concordance rate of 92 percent of ASD compared to dizygotic twins with a 10 percent concordance rate (Yoon et al., 2020). Furthermore, about 15 percent of cases of ASD have been shown to be associated with a known genetic mutation (APA, 2022). Additionally, there seems to be different de novo mutations in specific genes in different families (APA, 2022). 14 Although various genetic and epigenetic risk factors associated with ASD have been suggested, no clear pathogenesis and specific diagnostic features have been identified (Yoon et al., 2020). It is however suggested that understanding epigenetics associated with ASD is important as they regulate gene expression, thus they can help in developing ASD therapies that control epigenetic states (Yoon et al., 2020). Some ASD related genes are believed to be associated with other neurodevelopmental syndromic disorders which includes fragile X syndrome and Rett syndrome (Yoon et al., 2020). Environmental factors such as advanced parental age, extreme prematurity, in utero exposure to valproic acid, prolonged lack of zinc during pregnancy and low birth weight are some factors associated with ASD (APA, 2022; Yoon et al., 2020). Autism spectrum disorders manifest in complex phenotypes; thus, they tend to be accompanied by comorbidities (Yoon et al., 2020). Epilepsy is one of the comorbidities and is associated with lower verbal ability and intellectual disability (APA, 2022). Presence or absence of intellectual disability and language impairment are considered some of the prognostic factors within ASD (APA, 2022). Often an individual that has functional language by age 5 years is usually perceived as having a good prognosis (APA, 2022). Treatment for children with autism spectrum disorder Treatment of ASD tends to be lifelong and is usually provided by highly skilled professionals which tends to be expensive thus putting a financial strain on parents raising children with ASD (Guler et al., 2018). Additionally, factors such as poverty and the cost of medication cannot be overlooked when considering the use of medication in individuals with ASD (Aderinto et al., 2023). The high cost of psychotropic medications including limited access to financial assistance and mental health resources significantly contributes to the disparities in healthcare and limits access to appropriate treatment for children with ASD (Aderinto et al., 2023). Early intensive behavioural intervention is the most commonly used treatment for children with ASD (McCarty & Frye, 2020). Early intensive behavioural intervention is based on the principles of applied behaviour analysis which is believed to improve cognitive functioning and language skills of children with ASD, thus improving their social skills and behaviours (Genovese & Butler, 2020). However, this type of treatment tends to be long as it is usually done for several years on a weekly basis (20 - 40 hours a week) (Genovese & Butler, 2020). Therefore, the amount of time required for this treatment can place great financial and time 15 strain on parents. This financial strain can then limit parents’ access to evidence-based interventions, thus compelling families to rely on alternative therapies with unproven efficacy (Aderinto et al., 2023). This reliance on alternative therapies may further exacerbates challenges of accessing appropriate and effective treatment for children with ASD (Aderinto et al., 2023). It has been found that the effectiveness of the child’s behavioural treatment interventions decreases when the mental health needs of parents are not met (Catalano et al., 2018). Therefore, it is important that parents’ experiences are understood and taken into consideration to avoid parents developing negative thoughts or being resistant towards their child’s treatment. For instance, in a study that was conducted in 2018 by Wetherston et al., it was found that parents had negative feelings towards healthcare professionals who were treating their children with ASD. These feelings were because parents felt as though their concerns regarding treatment of ASD were not shared by healthcare professionals and their information was not used in a collaborative manner. Such thoughts can result in parents being resistant towards the treatment of their children. Furthermore, these thoughts highlight the need for healthcare professionals to be aware and culturally sensitive of the different beliefs that parents have (Shilubane & Mazibuko, 2020). Parents play a vital role in the selection and implementation of treatment of ASD for their children, therefore it is important that their views are taken into consideration otherwise they may withdraw from treatment (Wetherston et al., 2018). The most common theme about ASD treatment is that when intervention is started early it has long-term benefits for the child (McCarty & Frye, 2020). However, late identification, long waiting lists, insufficient infrastructure, and delayed diagnosis can hinder accessing early treatment which further exacerbates the challenges that children with ASD and their families face (Aderinto et al., 2023; McCarty & Frye, 2020). Parents are usually the first to notice any developmental delays or behaviours in their children that may not be typical, thus prompting them to have their children screened, however, their lack of awareness or knowledge may delay the treatment process. Additionally, during the initial clinical evaluation for ASD, parents are interviewed to provide insight about the presenting problem (Genovese & Butler, 2020). Therefore, their insights are important in the diagnosis and treatment of their children with ASD. Thus, it is important to gain insight into their lived experiences of raising a child with ASD and their understanding of ASD. 16 Parenting a child with autism spectrum disorder Parenting is complex and can be emotionally draining, which has a noteworthy impact on parents’ wellbeing (De Clercq et al., 2022). Parenting a child with ASD can be challenging physically, emotionally, socially, and financially (Eapen et al., 2014). Parents as primary caregivers of a child with ASD means that they need to provide complex care to their child while also having to balance other family aspects and work commitments, which may put a strain on them (Woodgate et al., 2015). In pursuit of caring for their child with ASD, their other children may feel neglected (Mosia & Tseeke, 2021). Children with ASD tend to be inflexible with regards to routine changes and lack of support which may restrict parents’ ability to work or advance in their desired career and often parents then need to adjust their lives, aspirations, and sometimes future plans when they have a child with ASD (Ooi et al., 2022). This may thus put more financial strain on parents (Schlebusch & Dada, 2018). According to research, parents caring for children with ASD are most likely to experience increase in stress, anxiety, depression, and stigma compared to parents of able-bodied children (Adams et al., 2020). The study by Martins et al. (2013) found that fathers of children with ASD expressed that parenting their child negatively affected their social lives, relationships with their spouses, and how they view themselves as fathers which may contribute significantly to their stress. Externalising behaviours such as hyperactivity and conduct problems of children with ASD have consistently been found to contribute to parental distress and poor physical health (Catalano et al., 2018). Additionally, children with ASD have a high likelihood of having comorbid conditions, such as obsessive-compulsive disorder, specific phobias, or attention- deficit hyperactivity disorder which may make it even more difficult for parents to manage their children’s behaviour (Catalano et al., 2018). Therefore, the complexity of parenting a child with ASD and the wellbeing of parents is increasingly becoming a public issue (Woodgate et al., 2015). Given the complex role that parents raising children with ASD must take, there is a need for additional support and resources, however, there is a lack of adequate services and support systems that help parents raising children with ASD (Adams et al., 2020). Research findings further support that there is need for primary caregivers to also be considered as the silent client when providing intervention for children with ASD (Fewster et al., 2020; Wilford, 2013). Raising a child with ASD also puts parents under financial strain due to high assessment costs, special diets which may be expensive, and education services (Mosia & Tseeke, 2021). For 17 low-income families with limited resources who may have already been struggling to support their family financially, this may put further strain on them (Schlebusch & Dada, 2018). It has been suggested that gaining parents’ insights about the needs of their children could be helpful in informing ASD treatment practices by providing insight about factors that support or hinder service delivery which could help in reducing financial and human resource barriers to evidence-based treatment in low resource countries such as SA (Guler et al., 2018; Mereoiu et al., 2015). Behavioural feeding difficulties and atypical eating are one of the most challenging behaviours children with ASD have, greatly impacting family mealtimes (Viviers et al., 2020). These behaviours thus create tense family interactions and increases parents’ stress levels (Viviers et al., 2020). Furthermore, such feeding difficulties and atypical eating behaviours may also lead to nutritional deficiencies, increased risk for other diseases, and significant health problems like rickets, while also negatively affecting quality of life (Viviers et al., 2020). Learning and understanding parents’ experiences in this regard can thus help in developing effective coping strategies for parents and help them to better support their children’s diet. Furthermore, in a qualitative study that explored the importance of context in early ASD intervention in SA, parents expressed that they needed to be equipped with necessary skills to help them deal with the variety of challenges of raising a child with ASD (Guler et al., 2018). Culture and autism spectrum disorders Although culture, socioeconomic status, or geographical region do not cause ASD they do however inform how ASD is understood across different contexts (Wetherston et al., 2018). South Africa is a multicultural and multiracial country, thus factors such as culture and linguistic background of the family are important to understand as they may affect the quality of treatment the child with ASD receives, as well as the experiences of the parents. Different cultures have different norms about social interaction, non-verbal communication, and relationships; such factors are usually used to mark impairment in ASD (APA, 2022). A South African retrospective case review noted racial variation in language ability in ASD, with about 94 percent of black African children being non-verbal at presentation when compared to mixed race children with 77 percent and 42 percent for white children (Springer et al., 2013). The racial variations in verbal ability were suggested to be due to socio-economic factors that serve as barriers to care (Springer et al., 2013). Therefore, cultural and socioeconomic factors may affect when an ASD diagnosis is made which can oftentimes lead to late or under diagnosis of 18 ASD (APA, 2022). Thus, understanding parents’ experiences and their understanding of ASD can be useful in providing insights on how ASD is understood across different contexts in SA, specifically black South Africans in this case. Cultural and superstitious beliefs about ASD are important to understand particularly within the African context as they influence and shape attitudes towards ASD and its treatment which may lead to delays in parents seeking medical attention or relying on alternative treatments (Aderinto et al., 2023; Mosia & Tseeke, 2021). In African cultures it is common for parents to take their children to traditional healers first before they seek medical assistance which further delays the diagnosis process (Shilubane & Mazibuko, 2020). Some parents may rely on prayers to deal with every day challenges including challenges in caring for their children. For example, in a study by Shilubane and Mazibuko (2020) parents reported that prayer helped them accept their children’s diagnosis of ASD. Although some of these practices may be helpful in helping parents accept their children’s diagnosis it can sometimes lead to delays in seeking medical intervention which may affect the effectiveness of treatment. In a study that explored the importance of context in early ASD intervention within the South African context, caregivers expressed the need for service providers to understand that they are culturally different to them, and thus need to be sensitive to their cultural background and include such knowledge when treating their children (Guler et al., 2018). Furthermore, one participant in the same study reflected how her mother as well as other women in her community discouraged her son from getting a diagnosis as they believed the son was trapped in evil spirits that needed to be released through traditional practices which left her feeling confused. Therefore, such cultural beliefs may lead to discriminatory and stigmatising behaviours which may sometimes be due to lack of knowledge and understanding. Cultural beliefs that view mental health and developmental disorders as caused by supernatural factors or as taboo tend to perpetuate stigma against ASD and other disorders (Aderinto et al., 2023). Additionally, cultural beliefs such as believing that the child’s ASD may be a curse or that the parent is to blame for their child’s ASD often lead to parents being isolated and shamed which limits parents’ access to social support (Aderinto et al., 2023; Guler et al., 2018). Thus, it is important that there is ASD awareness otherwise parents’ support systems are limited. This is particularly important in a country like SA with so many varied cultural and racial groups. Culture influences thoughts and behaviour, therefore, it plays a noteworthy role in how parents understand their children’s development and behaviours which will ultimately influence the 19 extent to which parents are willing to adhere to their children’s treatment (Mandell & Novak, 2005). It is also important to note that due to genetic and environmental factors, there might be cultural differences in how symptoms of ASD may be understood (Mandell & Novak, 2005). For example, in some black South African cultures the child’s repetitive behaviours may be perceived as being disrespectful while some may see it as the child being cursed (Guler et al., 2018). Culture also influences intervention compliance (Adams et al., 2020). However, factors such as the availability of treatment in the child’s first language tends to be complicated and limited in SA (Wetherston et al., 2018). When working with children it is also important to consider parent’s needs, therefore, a family-centred approach is required when developing an intervention for children with ASD (Adams et al., 2020). Grief and ASD diagnosis within the family A diagnosis of ASD in the family often comes with a painful assimilation process which can be compared to a grieving process in which the family grieves the loss of a ‘typical child’ (Bravo-Benítez et al., 2019). This type of grief has been considered chronic sorrow and non- finite grief (Bravo-Benítez et al., 2019). The concept of chronic sorrow is defined as profound sadness that parents with children with mental disabilities feel when they experience the loss of the fantasised child which brings about feelings of sorrow (Olshansky, 1962; Teel, 1991). Non-finite grief is used to refer to families that are experiencing loss as a result of chronic illness, disability, or accident (Bruce & Schultz, 2001). Families with a child with a disability often face challenges such as interpersonal difficulties, chronic physical and emotional crises, adapting to routine changes and financial burden (Krishnan et al., 2017). As a result, parents may go through chronic sorrow throughout their life span (Olshansky, 1962). Yet, parents tend to not be included in the treatment of their child with a disability (Krishnan et al., 2017). In the context of parents raising children with ASD this kind of loss tends to be re-experienced by these families when their children do not reach expected developmental milestones (Krishnan et al., 2017). The sadness is defined as constant and that it gets triggered during critical periods of development of their children when parents recognise the disparity between their child and their fantasised child (Teel, 1991). According to Boushey (2001), due to the chronic nature of their children’s diagnosis, parents tend to experience a complicated form of non-infinite loss and grief. Thus, chronic sorrow and sadness recur throughout the parent’s and child’s lifetime (Teel, 1991). Other authors adapted the concept of ambiguous loss which refers to an ‘incomplete and uncertain loss’ in which although the child is physically present, they are 20 emotionally absent or distant (Boss, 1999). For most parents, particularly those with children with disabilities, this phenomenon is reported not to be outside the range of normal experience and may not require medical intervention, however, it is suggested that if provided with long- term support by professionals it can help parents accept the chronic sorrow as a normal response to loss in order for parents to achieve increased comfort in raising their children (Olshansky, 1962). Support systems Supporting parents who are caring for children with ASD has been identified as an important part of treatment plans (Shepherd et al., 2020). This is important because most ASD-related interventions are implemented at home and lack of support increases parents stress which then negatively impacts the quality of care the child receives which in return may then create a cycle increasingly harmful parent-child and parent-parent relationships (Shepherd et al., 2020). Therefore, support received from family, peers, and school has been found to play a crucial role in assisting parents deal with the challenges that are associated with caring for a child with ASD (Krishnan et al., 2017; Shilubane & Mazibuko, 2020). This kind of support has been found to be helpful in enhancing parents’ emotional wellbeing (Shilubane & Mazibuko, 2020). Social support has been suggested to be as a protective factor against parenting stress of raising a child with ASD and helpful in assisting parents adjust psychologically to their child’s diagnosis (Shepherd et al., 2020). Furthermore, the negative impacts that raising a child with ASD has on parents can be mitigated through social support systems (Shepherd et al., 2020). Additionally, family relationships and the marital relationship have been identified as important sources of support to parents raising children with ASD (McStay et al., 2015). Spousal support has been linked to fewer depressive symptoms, greater child acceptance in the family, as well as higher relationship quality (Mcstay et al., 2015). Both formal and informal support have been identified as an important source of support. Formal supports include support that is usually provided by professional services which mostly tends to require payment, while informal support is usually provided by non-professionals such as family and friends and requires no payment (Shepherd et al., 2020). Parents tend to mostly access informal sources of support and relying on this kind of support may be important to help parents cope with the everyday demands of raising a child with ASD most especially when there is limited access to treatment (Sharabi & Marom-Golan, 2018; Shepherd et al., 2020). 21 Parents raising children with ASD may be motivated to use online groups as an opportunity to share their experiences, make sense of the diagnosis and provide mutual support and encouragement (Abel et al., 2019). Social media has been found to provide a user-friendly platform that parents use to seek advice or support 24 hours a day (Shepherd et al., 2020) which means that parents may receive multiple replies and perspectives from different kind of people which may increase the risk of incorrect information being shared. This further highlights the need for increased ASD awareness as although such groups may be helpful, they can also be harmful when incorrect information is shared. In a study by Abel et al. (2019) which analysed the content and purpose of numerous ASD- related Facebook groups, they found that the majority of the groups, about 60%, provided emotional support by sharing of stories. Similarly, in the study by Shepherd et al. (2020) parents rated social media as the highest provider of emotional support and helpful in reducing parenting stress than formal sources of support. In a study by Smith-Young et al. (2022) it was found that parents when faced with uncertainty they engaged in advocacy work as a way to raise awareness and seek help. In raising awareness, parents wanted to share their experiences as well as educate others through their lived experiences (Smith-Young et al., 2022). Advocacy was also found to be used by parents as a coping mechanism to help parents accept their children’s diagnosis (Smith-Young et al., 2022). Autism spectrum disorder knowledge among black African parents Parents are often responsible for children’s healthcare management which includes understanding and sharing delays in children’s development; therefore, parents play a crucial role in the early detection of child developmental delays (Campbell et al., 2018). However, for children who live in poverty or whose parents have lower levels of education, their parents tend to notice the delays at a much later stage due to the lack of knowledge (Sharabi & Marom- Golan, 2018). The lack of knowledge about ASD often leads to delay in parents seeking medical interventions (Campbell et al., 2018). Furthermore, the lack of awareness and understanding amongst the general population also tends to create sigma and discrimination which then hinders access to essential support and resources for parents raising children with ASD (Aderinto et al., 2023). Research has found that lack of ASD knowledge to be a common theme among black parents’ experiences who are raising children with ASD. For example, in a study by Mthimunye and Mazibuko (2020) parents reported that they were not adequately 22 informed about ASD, while for some they learned about ASD when their children were diagnosed before then they had never heard about it. Conclusion Raising a child with ASD has a significant impact on the individual, family, and society; however little research about ASD and how it affects family functioning has been conducted in SA. Furthermore, South Africa is a multicultural and multiracial country, thus factors such as culture and linguistic background of the family are important to understand as they may affect the quality of treatment the child with ASD receives, as well as the experiences of the parents. Culture influences thoughts and behaviour, therefore, it plays a huge role in how parents understand their children’s development and behaviours which will ultimately influence the extent to which parents are willing to adhere to their children’s treatment (Mandell & Novak, 2005). However not much research has been conducted to explore and gain understanding on how culture influences how ASD is understood within black African families. It is however important to understand the role of culture and how a diagnosis of ASD affects family and social functioning of black African parents as their experiences will influence their adherence to treatment. This leads to research questions of this study: 1. What are black South African parents’ experiences of raising a child with autism spectrum disorder? 1.1. What are black South African parents’ familial experiences of raising a child with autism spectrum disorder? 1.2. What are black South African parents’ social experiences of raising a child with autism spectrum disorder? 2. How do black South African parents understand autism spectrum disorder? 2. 1 What are black South African parents’ beliefs about autism spectrum disorder? 23 CHAPTER 3: METHODOLOGY Research design and paradigm The primary focus of this research study was to understand parents’ experiences of raising a child with ASD; thus, a qualitative research design was utilised. Qualitative research designs put emphasis on experiences, understanding, and meaning making within context and how people interpret and make meaning based on their experiences (Merriam & Tisdell, 2016). Furthermore, it focuses on understanding how people experience and manage a particular situation (Willig, 2008). Revealing and understanding people’s values, belief systems, rules of living, and their interpretative schemes can be achieved through qualitative research (Omona, 2013). Therefore, this research design allowed me to understand the complexities that parents experience when raising a child with ASD from their viewpoint and in rich detail. To understand parents’ experiences as lived by them, an interpretative paradigm was used. An interpretative paradigm emphasises discovering how people understand their lives (Omona, 2013). An interpretative paradigm states that to discover the subjective experiences and how participants make sense of those experiences, the focus of researchers should be on understanding how participants interpret their subjective experiences. Furthermore, it is also believed that research that is focused on discovering, gaining insight, and understanding people’s experiences as lived by them can also make a great difference in people’s lives (Merriam & Tisdell, 2016). Therefore, the qualitative, interpretative paradigm allowed for an in depth understanding of how parents experience raising a child with ASD. Sample and sampling The study consisted of six individuals who have a biological child with ASD. Their children were diagnosed with ASD at least two years prior to the parent participating in the study. This allowed for parents to be able to reflect on and provide rich descriptive information on their lived experience of raising a child with ASD. All parents were over the age of 18 years and also were living with their child with ASD on a fulltime basis which allowed for parents to share some in-depth experiences of raising a child with ASD. The children of the participants were diagnosed with ASD by a relevant medical professional. Furthermore, all participants were black and South African. All interviews were conducted in English. 24 Purposeful sampling was used. The aim of this sampling technique is to obtain insight and understanding, therefore, this sampling technique allowed me to purposefully select individuals that met the study’s criteria and characteristics (Omona, 2013). Various organisations that work with children with disabilities and Autism were approached to obtain the sample. Obtaining the sample proved to be difficult and social network sites such as Facebook were thus used. A poster was created (please see Appendix C) and shared with various Facebook groups and community Facebook groups. Once parents indicated interest and willingness to participate in the study, Participant Information Sheets and Consent Forms (please see Appendix D and E) were then sent to participants before the interview. Table 1: Research participant characteristics Child Participant no Parent role Relationship status Employment status Intervention facilities Sex Age Age when diagnosed Number of other children in family 1 Mother Single Employed Private then went public Boy 8 5 1 2 Father Married Employed Private and public (school) Boy 14 4 1 3 Mother Single Employed Private Boy 5 3 0 4 Mother Married Employed Private Boy 17 2 2 5 Mother Traditionally married Self employed Public then went private Boy 14 4 1 6 Mother Single Employed Hybrid (mostly private) Twins (boys) 12 L=5 K=8 0 25 Data collection method and procedure One-on-one semi-structured interviews were conducted with participants. Formats that are less structured assume that individuals have unique ways of defining and understanding the world (Merriam & Tisdell, 2016). Therefore, the use of semi-structured interviews allowed for the exploration of how different parents experience raising a child with ASD. Semi-structured interviews allowed for flexibility and for the interviewee to respond to new ideas, unique worldviews of participants, as well as the situation at hand (Willig, 2013). The use of semi- structured interviews also allowed for follow-up questions to gain in depth understanding of parents’ experiences of raising a child with ASD (Merriam & Tisdell, 2016). Furthermore, it also provided parents with an opportunity to enter into in-depth reflection of their experiences, as well as freedom of expression. After reviewing relevant literature, an interview schedule was designed (please see Appendix B). An interview schedule is a carefully constructed set of questions developed by the researcher to redefine the topic under investigation to help the researcher not to lose sight of the original research question/s (Willig, 2013). The interview schedule comprised of open- ended questions to allow for in-depth information and follow up questions when needed. The research supervisor of the study reviewed the schedule. This was important to ensure that the schedule aligns with the research questions and check the appropriateness of the questions (Adams et al., 2020). Furthermore, the first two interviews were used as pilot interviews to improve the validity and reliability of the interview schedule. After the first interview I reviewed the interview with my supervisor and one additional question was added to the demographic questions. The initial plan was for interviews to be conducted in person; however, not enough participants were found to be interviewed in person. Therefore, only one interview was held in person and all other interviews were conducted online using Microsoft teams. All interviews were audio recorded and transcribed verbatim for data analysis. As the researcher, I transcribed the data myself, this allowed me to become familiar with the data while protecting confidentiality of participants. All transcribed scripts of the interviews were anonymised by removing all identifying particulars of participants, except in cases where participants expressed that they would like their names or children’s names to be used. Only the researcher had access to the recordings. The supervisor had access to the anonymised transcribed scripts. The anonymised transcribed scripts were password protected and stored in a password protected device. 26 Data analysis Reflexive thematic analysis was used to analyse the data. Reflexive thematic analysis is a flexible interpretative approach to qualitative data analysis that allows for themes to be discovered within the data set (Braun & Clarke, 2013). Furthermore, it also highlights the researcher’s active role in the interpretation and analysis of the data (Braun & Clarke, 2013). Thematic analysis is not rooted in any pre-existing theoretical framework, and thus this allowed for flexibility (Braun & Clarke, 2013). The inductive approach was utilised so that the data best represent meaning and parents’ experiences as communicated by them (Braun & Clark, 2013). An inductive approach is not rooted in any pre-convinced theoretical framework; therefore, codes are mainly a reflection of the content of the data to best represent meaning as communicated by participants (Braun & Clarke, 2013; Bryne, 2022). Therefore, it allowed me to reflect the reality of parents’ experiences of raising a child with ASD in rich detail and identify common emerging themes and what information they provide in terms of meeting the research aims of the study. The following steps of Braun and Clarke’s thematic analysis technique were followed: Step 1: I familiarised myself with the data. The interviews were transcribed manually by myself, and this allowed for deep immersion into the data as well as helped me to identify appropriate information that was relevant to the research question and aims. After transcribing the data, I then read and re-read each transcript. While familiarising myself with the data I also noted down my thoughts and feelings with regards to the data and what seemed to be most common responses. Step 2: This step entailed generating initial codes through organising the data into meaningful groups. Extracts from the data were used to demonstrate the codes to ensure quality of the analysis. I copied and pasted quotes from the data into a separate word document and began to evaluate whether the different codes could combine to form a sub-theme and eventually form into a logical main theme. During this stage, I looked for thematic meaning instead of looking for individual meanings of the codes which helped in deriving main themes. Step 3: This step entailed searching of themes through sorting the various codes into potential themes and putting relevant coded data extracts into identified themes. During this stage I ensured that there was consistency among participants’ responses and chosen data extracts to 27 form themes. Mind maps were used to connect and understand the relationship between the identified codes and candidate themes. Step 4: This step included reworking on my candidate codes by checking whether the themes formed a coherent theme, there was validity between my themes and the data set, and then create a thematic map to see how all the different themes fit together and what this says about the data. The development of these themes involved some level of interpretation. Step 5: In this step the themes and subthemes were named and defined so that I could refine them for analysis. I highlighted what each theme and subtheme was about and what they say about the data set in relation to the research questions. Step 6: This step entailed the final analysis and writing of the report which took place once all the themes had been identified. Each theme was analysed and discussed in detail. Ethical considerations Ethical clearance was obtained from the University of the Witwatersrand’s Human Research Ethics Committee (non-medical) (MClin/23/02). Parents were presented with participant information sheets and informed consent forms (please see Appendix D and E) before the interviews. Written consent was obtained from each participant. No identifying information was revealed. In order to ensure confidentiality and final anonymity each participant has been given a pseudonym except in cases where participants expressed that they would like their names to be used. The study required parents to share about their lived experiences in raising a child with ASD. For some parents it may have invoked intense emotions, thus before the end of each interview I conducted a debriefing session (please see Appendix B) to check if participants feel fine to end the interview. Furthermore, participants were reminded that they can go to the Emthonjeni Centre at the University of the Witwatersrand for free counselling services if they needed to discuss their emotions further. Contact details of free ASD specific service providers were also included in the participant information sheets (please see Appendix D). Methodological Rigour Qualitative research tends to be based on the subjective interpretations of the researcher, therefore, to evaluate quality of my research study measures such as using researcher reflexibility, credit checks with my supervisor, documentation, grounding analysis in examples 28 and the use of direct participant quotations, as well as reference to existing similar studies were used. Grounding my analysis in examples extracted from the data was used to ensure the validity of my interpretations and that they fit with the data (Sandelowski, 1993). Documentation of the analytic process was done by explaining how reflexive thematic analytic steps were used to analyse the data. Furthermore, during the data analysis stage I looked for consistency among participants’ responses and used existing research studies to check consistency with other similar studies which also helped with understanding and making meaning of the data and validating my analysis (Sandelowski, 1993). All aspects of methodology and data analysis were detailed to ensure dependability. Confirmability was established through reflexivity to reduce the risk of bias (Adams et al., 2020), please see the section below. Documentation of the data analysis process included explaining how thematic steps, as proposed by Braun and Clarke (2013), was used to analyse the data. Researcher reflexivity Some participants shared with me how upsetting and difficult it was for them when they did not receive good treatment from health professionals when searching for answers for their children’s behaviours. This led to me being left with feelings of guilt as I felt that I was in some way responsible and that my identity as a clinical psychology student emotionally triggered them in some way. To deal with these feelings during the interview I reminded myself of my role in the research as researcher and used my therapy skills in holding what was mine while reflecting the participants’ feelings. Additionally, I consulted my own personal therapist to deal with those feelings. I also noted that during the interviews, there were points where I felt the pull to want to use my therapy skills and identity as a clinical psychology student to provide some counselling to those parents perhaps also as a way to deal with those feelings of guilt. I dealt with such feelings by again reminding myself of my role in the study, that I am a researcher and not a psychologist here and referring the parents to the Emthojeni Centre and helped them in getting referral forms in this regard. Consulting my personal therapist to deal with my own feelings also helped me during the analysis process so that I interpret, and report parents’ experiences as shared by them without my own feelings of guilt clouding my judgement. As a black researcher who grew up in a black society, I was familiar with some of the cultural beliefs that participants shared, while some I was not familiar with, which at some points during the interview made me question some of those beliefs. Therefore, credit checks with my research supervisor was also helpful in ensuring that my analysis and interpretation of 29 the data was based on the data received and this also helped in reducing personal bias in assuming similarity with the participants because I am also black. 30 CHAPTER 4: RESEARCH FINDINGS Themes 1. Pre diagnosis 1.1 Milestones 1.2 Waiting period 1.3 Lack of knowledge 2. Diagnosis 2.1 Receiving a diagnosis 2.2 Making sense of the diagnosis 2.3 Cultural and religious factors 3. Post diagnosis 3.1 Family dynamics 3.2 Interpersonal relationships 3.3 Financial challenges 3.4 Culture and community 1. Pre-diagnosis This theme captured parents’ experiences before their children were diagnosed with ASD. Participants reported that this stage was filled with confusion as they did not understand or know what was happening with their child. Parents reported the pre diagnosis period to be difficult for them. 1.1 Milestones Parents in the study reported that not reaching certain child developmental milestones at certain ages raised a concern that there might be something wrong with their child. The experiences were shared as being: … so, the first thing for me was the milestones, he was not reaching his milestones…he didn’t crawl, he basically just walked, so it was, he wasn't developing like any other child (participant 1) …when we needed to start, to get to communication milestones, it really became a struggle (participant 6) Several parents reported that their children met expected developmental milestones until there was a sudden change and their child stopped reaching certain milestones, or they regressed. This sudden change alerted them to the fact that there was something wrong with their child. Some parents expressed that the switch was difficult for them, as illustrated in this extract: 31 Before he used to…say few words…then he went mute…the child was fine, the child was okay, counting and doing all these things, he was just a bright child and then boom autism and the switch. Yoh the switch was just a strain, it was so painful (participant 3) One parent reported that although the change alerted him that there was something wrong with his child, he was in denial at first which made him take longer to get his child assessed. This wait to attend to his child is linked to being black in participant 2’s mind: …he was developing well as a child, like any normal child would do but I think at the age of 4, 4/5 you started to see that he was regressing. There were few things that were changing, his speech was no longer the same and you could see he had so much energy. But you think as a child, all the kids have energy so there is nothing wrong and you also, as a parent sometimes you are in denial, you know I think it's us like black people sometimes. You know with white people as soon as they see something wrong with the child they will take them to specialist, but with us we think you know the child will be okay and that's the same attitude we had, we didn’t think there was anything wrong… One parent who is raising twins, reported that her children were diagnosed at different ages and that with the one twin they did not think he had ASD, and they took him to mainstream school until later when he started displaying signs of autism. She described the experience as confusing because she was not sure if it was signs of ASD or he was mimicking his twin, the experience was reported as: …you are not quite sure if they're just mimicking each other's behaviour or there is something to respond to, so it definitely took a while to identify his and in fact again, that's why his diagnosis took so long because I really had to process it and be like okay maybe we need to consult… (participant 6) 1.2 Waiting period Following their children not reaching certain milestones and regressing, parents then took their children to get assessed. Some parents in the study reported that they had to wait long periods of time, for some it took years before they could get a formal diagnosis of autism spectrum disorder: 32 I would say Aobakwe was 4 when he had, when we realized that he has autism but to get a professional diagnosis he was 6, 6 years when he got the doctor writing down that yes, he is autistic (participant 2) Eventually when I got the diagnosis because with Doctor … there was a 2 1/2 year waiting period (participant 1) Participants attributed the waiting time to how long it took within the public sector more especially in big cities for their children to get diagnosed. They described this period as stressful because they needed the diagnosis for school placement. Due to this, one parent reported that they decided to go to a town in the Free State province to receive a diagnosis as they felt that because it is a small town it may increase their chances of getting a diagnosis earlier unlike when they are in Johannesburg. The experience was shared as: …unfortunately, with Joburg at that time it was hustle to get a diagnosis…I realized it's not gonna happen this year, it’s gonna take more than two years for us to get a diagnosis and get the child into school and I was not gonna wait for my child to be 8 to start schooling. So, a friend of mine, his mom is a nurse in a rural area of Free State, a small place next to Thaba’Ntsho so she said no bring the child here let’s see what we can do… I think within six months if I still remember we had the diagnosis (participant 2) Participant 3 described this waiting period as painful and stressful as she did not understand what was happening and when asked at her child’s school, she had no answers to say what is wrong with her child: …waiting for your appointment to meet this pediatrician neurologist, it is just painful because when they ask you, you go to a parent meeting and people will just be talking and talking, and with you when they ask you, you will be like guys I don’t know what is happening, I am not sure, my child is not yet diagnosed… 1.3 Lack of knowledge During the pre-diagnosis period, several parents mentioned that they did not know anything about ASD, they only learnt about it after their child was diagnosed. They described this period as difficult as they were confused as to what could be happening with their child. Most of the participants reported that they did not know about ASD, but rather knew about physical and learning disabilities. These experiences were described as: 33 Yoh, I didn’t even know how to write autism, I was just so surprised that there is something called autism, I was more familiar with physical disability but with mental disorders I just did not know anything (participant 5) I first suspected that something was wrong with him you know when he was not hitting his milestones, I just did not have a word for what it was (participant 1) I only knew about the hyperactive one, the Down syndrome you know, I only knew about that this one about slow learners, I only knew about that, so I didn’t know that there is autism (participant 3) I did not know about autism spectrum disorder honestly speaking uhm before my child was diagnosed (participant 4) Due to the lack of knowledge and understanding, one parent reported that she consulted a sangoma1 and other alternative options with the hope that getting a cultural insight might offer an understanding of what was happening with her child and hopefully get a solution: … before I got my diagnosis, I tried everything, I went from sangomas, church everything, I have tried everything. (participant 1) One parent shared that due to the confusion and lack of understanding his wife and her family suspected that his family had done something to the child which caused tension in the house: My wife’s family was saying this, and my wife was also saying this to say your family did something to the baby that’s why there are issues with the child and that’s before anyone thought of autism. (participant 2) Participant 5 shared that because she did not know or understand what was happening to her child, she just thought maybe her child was crazy: I was just like everyone else who thought it was just a person who is crazy. (participant 5) These experiences show how this period was painful and confusing for most parents and how the lack of knowledge and understanding caused tension in families which further made the A sangoma is a spiritual healer (Geiselhart,2018) 34 experience more painful. These experiences also suggest that some participants began to rely on specific cultural beliefs and practices in order to make sense of their child’s presentation. 2. Diagnosis This second theme captures parents’ experiences during the diagnostic phase, how parents reacted, challenges they experienced, support structures they turned to, and how they learnt more about ASD after their children received a diagnosis. 2.1 Receiving a diagnosis Following the experiences of confusion and not understanding what may be happening with their child, as well as difficulties they had with school placements, parents went for medical intervention in the hope of receiving clarity. Some parents reported the experience to be frustrating as some doctors were not sure what the problem could be, encountering long waiting periods, while also being stressed and worried about school placement: …unfortunately with Joburg at that time it was hustle to get a diagnosis because everyone gave you their own reason why this child is like that… you need to go through the process of getting a letter from the clinic and from the clinic they will refer to the hospital… we went there and I think they checked in around March and they said the next appointment would be around September (participant 2) I consulted this other doctor, then he did the investigations and then he said he doesn’t know what is happening… I had to get that diagnosis and then I consulted a pediatric neurologist, and he diagnosed that yes, it is autism (participant 3) ….I didn’t understand myself by that time why my son is not developing like other children but I could get the sense that even the nurses didn’t know because if they knew something they would have just pointed it out … it was really frustrating eeh remember I was trying to get something to hold on to, to say okay this is what is wrong with my son, so if I am getting different answers… (participant 5) Participant 1 said that because she did not know much about ASD, she was advised by the principal at her child’s school to seek out help and have her child assessed: 35 At the daycare that he went to I was speaking to the principal and telling her my concerns and that's when she recommended that I go to doctor because her grandchild was autistic that's how I got to start the whole process. One parent reported that she was told by family members that her child has ASD, however she did not take kindly to that. She described this experience as difficult and isolating since she did not know or understand the disorder. She described the experience as: so the first reaction was really horrible, so my sister in law walks in and says this child is autistic, and I don’t know what autism is….I was like, you walk into my house and you are not even a doctor or what…I did not take kindly okay and uhm my mother-in- law reaches out to my mother, and says uhm, so my mother-in-law she is a nurse and she asks my mother uhm ‘do you have an experience of delayed mental whatever in your family?’ And my mother is asking why are you asking me that, and she says ‘no, I picked up that you know my son is like 1 2 3’…I think the way the thing unfolded and this and that, and I just felt a little bit isolated and I felt like people are not understanding me in as much as I don’t understand. But at the time I felt like no there is no support here, you get what I am saying? So it was difficult, it was extremely difficult (participant 4) Participant 2 reported that due to his work and the long diagnostic process, he took his son to his grandmother to help them go through the diagnostic process while he was at work. The experience was described as: ….so, the truth is that with us, I was in Joburg, and everything was taken care of by my mom, so we were supporting financially… These experiences highlight the frustrations parents felt with having to wait to get answers that they desperately needed in order for their children to get placed in school as well as for them to understand what was going on with their child. These accounts also illustrate the role the greater family plays in black cultures in South Africa. 2.2 Making sense of diagnosis Receiving a formal diagnosis of ASD was a relief to some parents as it helped them to understand what was happening with their child and gave them hope that something can be done. Although it was a relief, parents also shared that they were scared and heartbroken. The 36 extracts below capture parents’ initial emotionally-laden reactions when they received the diagnosis: For me because I knew something was wrong, I was happy that there is actually, an answer and way forward because you are parenting someone who you are not sure what's wrong with the child. So, for me, having a diagnosis was firstly a relief and then secondary emotion um heartbreaking (participant 1) mmm to be honest I was relieved but scared and just worried about how am I going to handle him because there was just a lot of information, it was so confusing at the same time so yeah. But I felt relieved because I always knew that there was something wrong with my son, so I needed something to hold on to, to say okay this is what it is wrong with my son… (participant 5) I think it was disappointment, uhm obviously followed by frustration, followed by anger, followed by resentment of some kind… (participant 4) …I was like God what happened? …you are like what did I do wrong? And then you ask so many questions, you cry for days but I just decided that as long as there is hope… (participant 3) One parent who is raising twins had different reactions to the diagnosis as her children were diagnosed at different times. She described the first diagnosis as a relief and the second diagnosis was hard to accept. The experience was shared as: I must say the diagnosis was a was a relief. The first time was with Omphile when I was told about autism…So, I think denial would be it, it definitely was denial, I was lucky in the sense that I had help…with Kgotso that was hard, that was hard because I think like with stages of grief, I think I was bargaining with God to say I could deal with it here but why are you giving it to me twice … so it was harder, but also it was free in the sense okay it can be the same condition but it presents differently… (Participant 6) Following the diagnosis, parents in the study reported that they went through a period of having to accept that they might not be able to do some things with their children. These experiences highlight how a diagnosis of ASD in the family can be followed by grief. Parents described the experience as hard and painful: It's a, it’s a constant grief that you carry and your grief as a family will never be the same (participant 6) 37 I was saying you don't know what you have until you don't have it anymore, you know. Because you know you look at like for me when my friends were having kids I always imagined that my son is gonna graduate from grade R, he is gonna go to normal school, he gonna play sports he gonna do this and that but when you have special needs child you, you forget you, some of the things that you will never be able to do…I can't take him to go get a haircut because he can’t deal with the environment and it overwhelms him you know, people take that for granted … people take being able to go on holiday with your child for granted I can't do that, he needs to uhm go to the place a couple of times firstly he needs to see the environment, understand the environment before we can even think of sleeping there you know so Eish its hard, yoh it’s hard (participant 1) He is still young but then to think that we are raising two different parts of, we are in different parts of experiencing life with our children so I would, to remind myself that I am on the other side of town but sometimes I get that thing of comparing how if my son didn’t have autism he would be in high school, those things will come…I would wonder how it would have felt like to see my son going to high school for the first time and so forth, would he have matured because I could sense that other parents are at the stage of adolescence and their children are starting to date and sometimes I would just want to have that feeling but anyway I am having my unique journey so I need to appreciate that and yeah (participant 5) Oftentimes black African families, particularly fathers take pride in having a son because they believe the son will continue the family name (Mudau & Obadire, 2017). Participant 2, who is a father, shared how his son’s diagnosis meant that he had to adjust his own dreams that he had for his son to the reality of his son’s disability: The emotional part uhm I would say as a black person, uhm especially as a guy, when you have a boy or a son you already have dreams you are thinking I am gonna worry about girlfriends now you know it's a nice stress kind of stress you know what Eish … and the worse part, Aobakwe looks exactly like me even if you saw him passing through you, you can actually that’s Paseka’s son, that’s how identical I look with him so I always have that thing to say you know what I want my son to be this, I want my son to do this, I want my son to achieve more than I achieved and you start saving money, you start doing things and boom your son has autism, now you have to align your dreams (participant 2) 38 Following the diagnosis, several parents in the study reported that they learnt about ASD after their children were diagnosed. Majority of the parents reported that they used the media, particularly the internet, to educate themselves about the disorder and to understand their child: I do a lot of research, I actually watch YouTube videos (participant 2) …. I started googling, I love Google… I just went home and googled, and I saw that there are stages, the signs to say these are the signs for this stage and I just saw that mine is below severe, I only researched, and I was like ohh okay... (participant 3) I used the internet… (participant 6) Some parents reported that seeing public figures and celebrities that have autism or who are raising children with ASD was encouraging and helped them to accept the diagnosis. The experiences were shared as: …I went to who is this Zakes Batweni’s wife, Zakes Batweni also has a ASD child and then I also look at those things and they just talk about their experiences and all that, and then yeah I just googled people in South Africa who had experienced such things and that’s how I knew that okay this is it, it differs, it is not the same, it has different categories and stuff (participant 3) …if Tommy Hilfiger, a person that has all this money, cannot cure their child with autism, who are we? (participant 2) These experiences highlight the positive influence of media and how it gives parents a sense of control when they are faced with the unknown and helped them to not feel alone as well as feel empowered with regards to receiving an ASD diagnosis for their child. 2.3 Cultural and religious contributions Following the diagnosis, some parents reported that they were in denial, and they found it difficult to accept the diagnosis and some questioned and blamed God. Some parents looked to God for comfort and guidance to help them accept the diagnosis: My mom was also a big Christian and uhm she encouraged me to pray about it and hence I was able to accept it sooner rather than later… I had already accepted it because when I first figured that something is not right, I prayed a lot, and I asked God to help me accept him …. (participant 1) 39 my mother was the one sole person that was there with me all the time, she was praying with me…she tried every little that could be done including uhm let’s go to pastor … we spend a lots of nights crying, praying and looking for answers … (participant 4) One parent who is raising twins, reported that the second diagnosis was hard at first to accept and she bargained and questioned God why it was given to her twice. She described the experience as hard but that it also helped her to understand ASD more and how it can present differently: ….That was hard, that was hard because I think like with stages of grief, I think I was bargaining with God to say I could deal with it here but why are you giving it to me twice yoh so it was harder, but also it was free in the sense okay it can be the same condition but it presents differently… (participant 6) Participant 2 reported that they did not believe in traditional medicine or healers, however after they got the diagnosis it was hard to accept so they then went to consult with a sangoma with the hope that their son would be helped and when it did not work, their experience helped them to accept their son’s diagnosis and that it is not curable. His experience was shared as: I have never been a person that believes in African medicine or Sangomas or traditional healers …. we took our child to a traditional healer because we were getting advice from different people so when you are desperate you do anything although I didn’t believe it ..so I had to change my mentality around traditional healers and traditional medicine just for the sake of maybe my son getting help, it is only later on that my wife and I decided that you know what these things are not going to work, it is autism, it doesn’t have cure, we are wasting money here…we also didn’t want to believe it is autism although we knew… (participant 2) These experiences highlight how out of feelings of helplessness and denial, parents can sometimes seek cultural and religious interventions. However, after failed trials with cultural interventions it helped them to accept the diagnosis, while for some parents’ prayer helped them to accept that their child has ASD. These experiences highlight the role of religion and culture in helping these parents accept their children’s diagnosis, particularly in black African families. 40 3. Post-diagnosis Raising a child with ASD has a significant impact on the individual, family, and society, as well as affecting family functioning. This third theme explored parents’ experiences post diagnosis and how they have had to adjust their lives. 3.1 Family dynamics Raising a child with ASD deeply impacts the family system, routines, and mealtimes. These themes were evident in the study, in that post the diagnosis period participants have had to make routine changes to accommodate their child. Such changes caused tension as the family was still trying to understand and adjust to their new lives, however, after a while, parents in the study reported that their families accepted their new reality and things improved: I think from the home set up; lot of things had to change… we began to change the diet in the family…. so, you can imagine that you are subjecting other people to a very difficult environment…my husband was very supportive, but I could feel as well that he was very much frustrated … (participant 4) As a result of routine changes that parents have had to make as well as the level of support their child requires, some parents reported that they have also had to make career changes or leave their jobs so that they can be able to be there for their children: I had to leave a high paying job to settle for a job that allows me to be able to one pick him up from school, two should I get a call I am able to go at a moment's notice…so I had to stop pursuing my dream to become a mother so yeah, those challenges… (participant 1) my wife is unemployed right now because when we realized our son had autism one of us had to look after the child while the other is looking for a job, so I found a job and my wife had to sit at home… (participant 2) … I got a job, I think it was at spar (grocery store), we used to work long hours till 8 o’clock in the evening and my issue that made me stop working was I would have so many appointments and they wouldn’t let me to go to, I had to choose, it is either I go to for one for the neurology and I don’t attend the other one … so yeah it was again difficult, then I had to stop working (participant 5) 41 As part of change in family dynamics, parents in the study reported that raising a child with ASD also impacted their marriages. Their experiences were shared as: I had to break up with my partner because he couldn’t accept that the child is like this… the treatment was not the same and I never ever want my child to feel like an outsider at home, it's bad enough that the world will treat him like an outsider and I just didn't want that at home especially in the, in my house, I just didn't want that so that's why I made that decision of walking away from everything (participant 1) we separated with my son’s dad because he could see, because I was also communicating with him to say there is something wrong with our son, what could be wrong, but he didn’t want that part he just wanted to have a nice life with a son who doesn’t have problems, so he pulled out of the relationship slowly but surely, he was out (participant 5) On a relationship, definitely I mean I have an 11-year-old who holds my hand more than any other 11-year-old would, that definitely strains a relationship … uhm I broke up with my children's father long before diagnosis and uhm even him he doesn't understand but it also makes dating difficult (participant 6) uhm relationship wise I felt like I needed to spend more time with the child and so on, and you begin to neglect your marriage … I think my husband was just quiet, just sitting there, observing the situation, and hoping that we are gonna get the best out of these interventions, but it was quite strenuous (participant 4) Participant 1 described that although she took the decision to break up with the father of her son, it has been emotionally straining to raise her child as a single parent: … motherhood is not what it's put out there to be, you know um, it looks like you can do it without a man, you can but it is emotionally taxing… I have the money but emotionally it is still hard, emotionally it strains you know, like sometimes when you wanna have someone to talk to … Black African men often pride themselves in being the leader of the family and that in times of adversities they need to be strong for their families and although they may be experiencing emotional distress, they tend to not share that with their spouses (Masemola et al., 2022). 42 Participant 4 described how she and her husband dealt with the diagnosis differently, she was talking about it, but her husband found solace in alcohol: …. the fact that he was not able to admit, I was crying, I was admitting, I was messed up and this and that, and at that time I think he felt like he needed to compose himself and be the stronger one and be more supportive, but actually he was finished himself and uhm because he couldn’t cry, he couldn’t do this and that, somehow he found consolation in alcohol, he did not become an alcoholic but he spent most of his time drinking, because he couldn’t open up and I think it was only when his sister spoke to me or I got to know that he was talking to his father and he was crying like you know it is really hitting him Interestingly, participant 2 shared that their child with ASD helps him and his wife get along and that he is the reason they would never get divorced out of fear that other people may not understand their son: the stress that comes with married people especially young people so when we have these fights we would actually not talk to each other….but because we had Aobakwe, especially Aobakwe because he would actually see, he would actually notice that something is different, sometimes he would take my wife’s hand and my hand and hold them against each other, sometimes he would want to get a group hug and all those things and we realized when we were getting along that we actually only get all these group hugs, the holding of hands when we are fighting or we are not getting along…. we did say that you know what with us we can only fight, we know that we cannot get divorced because I don’t think I will be happy to see another man taking care of Aobakwe, they might not, they will do things that I don’t think Aobakwe should be doing and they might not understand his condition and my wife was saying the same thing about me (participant 2) Another parent expressed that she enjoys being a single mom as she can independently make decisions regarding her child with ASD: I will actually say luckily, I'm a single parent I have got to acceptance on my own, I make decisions on my own (participant 6) Parents reported that the diagnosis of their child impacted the family system and how they parented their other children. The theme of overcompensating and guilt were evident in how they felt and related to their other children, as illustrated in the f