Autism is becoming more prevalent both internationally and in South Africa [1]. Globally, one in every 160 people is estimated to be living with autism spectrum disorder (ASD) [2]. Scientifically sound, accessible, and relevant support services have been indicated as a definite need of families that raise an autistic child [3-5]. A deeper and better understanding of the impact of autism and its symptoms on the involved families is indicated as essential to the management of the child and the family as a whole [6-8].

ASD is characterised by persistent difficulties with social communication and interaction, as well as the presence of restricted and repetitive behaviours, interests, or activities [9]. These difficulties have a significant lifelong impact, not only on the development of the individual but also on the family [10]. A study conducted by Nealy, O’Hare, Powers, and Swick [11] explains that the impact of autism on a family is significant and is experienced on mainly two levels. The first level is pre-diagnosis, where the unknown and uncertainty about what is going on are prominent. The second level is post-diagnosis, where the uncertainty and apprehension of what the diagnosis entails and what will happen next are prominent. Families are an integral part of the management of these experiences as they normally are the first to detect symptoms and make choices about early interventions [12]. What complicates this experience is the fact that there is no single behaviour indicative of autism, nor will any child show all of the disorder’s deficits at any given point in time [13]. There is thus not one set of guidelines or rules that will work for each autistic child, which intensifies the burden on the family to find a unique solution to their child’s specific needs.

The recent global increase in the prevalence of autism is in a large part attributable to changes in reporting practices [14]. This may be due to better awareness and the broadening of diagnostic criteria [15]. However, early diagnosis of autism remains rare, especially in certain disadvantaged communities [16]. This is exacerbated by the fact that indications of most spectrum diagnoses and the essential symptoms are unfortunately only noticed around the age of six years and older [17]. A study [18] by McKenzie et al. (2015) found that prior to diagnosis, many families may suspect something is not right with their child, but they do not report their suspicions due to a lack of knowledge and understanding of normal developmental patterns, as well as of autism and its symptoms [19, 20].

According to Meirsschaut, Roeyers and Warreyn [21], the fact that ASD is still considered an unusual disorder has a significant impact on families’ reaction to the diagnosis, as well as the post-diagnostic management of the child. Studies [22, 23] indicate that post-diagnosis, the economic and educational status of the parents play a vital role in the management of ASD. Parents from low-income households with limited education may not fully understand the developmental challenges their child is experiencing [22, 23]. Additionally, professional help or assistance might not be readily available or accessible, which has disadvantageous effects on several areas of family functioning, such as adding extra strain on the parents (individually), marital relationships, as well as sibling relationships [24]. This highlights the need for scientifically based and effective early interventions that will give relevant support also in under-resourced communities.

It is clear that autism has a significant impact on the psychological and social experiences of caretakers and families that raise an autistic child. The psychological impact on caretakers and families includes denial, emotionality, misinterpretation of the diagnosis, anger, disinterest, dislike, and uncooperativeness towards the professional [12]. Nissenbaum, Tollefson, and Reese [19] add that parents of children with autism have a greater risk of suffering psychological distress as they experience increased stress, depression, parental burnout, concerns about their child’s dependency, the effect on family life, poor physical health, and future psychosocial problems [12]. Furthermore, a lack of applicable and relevant educational resources (schools, teachers, and learning material) and support also add to the emotional strain on the parents. Few schools are accommodative of children with autism, which results in most children with autism remaining at home, which places their education as the sole responsibility of their caregivers [22]. This normally results in one parent being the primary caregiver, quitting a job reducing the much-needed family income [25].

The social impact on the family is mainly based on the reaction from friends and extended family members. Poor societal awareness causes families to feel judged and isolated because of their child’s diagnosis/condition [16, 20]. It is also indicated that raising an autistic child results in families giving up normal family routines and socialisation practices, as well as having difficulty maintaining employment [26, 27]. Over and above the aforementioned challenges faced by families of children with autism, limited sensitivity and accessibility in the public health and education sectors in Africa and South Africa intensify the parents’ experiences of not being understood or helped [3, 28].

In South Africa, it is indicated that one in every 86 children from the Western Cape is affected by autism [6]. Few studies have been conducted in the rest of South Africa or even sub-Saharan Africa, but as autism is said to be found in every ethnic and social group, it can be predicted that it is unlikely that the statistics will be any lower in other provinces [3, 7, 8]. It was also found that in South Africa, cultural explanations and interpretations of certain spectrum symptoms complicate the diagnostic and treatment processes. These cultural prejudices play an important role in the psychosocial experiences of the involved family [29-33]. Some of these beliefs include the belief that the child’s illness was brought about by ancestors as punishment for the family’s wrongdoings or that the child’s behaviour is linked to potential messages from their ancestors, while other beliefs link their child’s symptoms to supernatural causes or ascribe the illness’ causation to external supernatural forces [34]. While most parents explore different cultural methods of diagnosing and healing with the aim of gaining a better understanding of their child’s functioning [33], several studies suggest that 60% of the South African population would rather make use of traditional medicine and consultations with traditional healers in an attempt to gain a better understanding of their problem [35]. Which leads to delayed diagnosis and intervention, by the time the diagnosis is made, a child has lost a significant amount of time to fully benefit from intervention. Therefore, the interventions received are viewed as inadequate [36]

South African families that raise an autistic child are reportedly experiencing significant challenges in terms of proper intervention programmes and educational services [3, 29, 30]. This has resulted in a high level of dissatisfaction with disability-related government support, which includes health, financial, and psychological services [30]. Families are left feeling as though they are isolated, alone, and in a state of ‘crisis’. [31, 32]

Taking the abovementioned statistics and information into account, it could be deduced that a high number of families in South Africa are faced with unique challenges in caring for children diagnosed with autism [37]. These families need appropriate and relevant services based on relevant and scientifically sound knowledge [38]. An integrative understanding of the experiences of these families is therefore critical, as it provides insight into their unique challenges, daily realities, and the impact of autism on family dynamics. This study focused on integrating what previous studies have found to be the pre- and post-diagnosis psychosocial experiences of families affected by the diagnosis of autism, internationally and in South Africa. This information will be valuable in informing mental healthcare providers about the development and implementation of appropriate and much-needed support services and intervention plans. The research questions for this study were as follows:

(1) What are the pre- and post-diagnosis psychological experiences of families that raise an autistic child?

(2) What are the pre- and post-diagnosis social experiences of families that raise an autistic child?

From the abovementioned literature, it is clear that having a child with autism affects and influences families and the broader systems the families find themselves in. It is furthermore clear that the challenges and stressors associated with raising an autistic child can significantly reduce the prognosis for effective interventions. It is important to explore families’ experiences in raising an autistic child in order to inform sound and scientific interventions and support programmes that can improve service delivery to these affected families.

An integration of what previous studies found to be the main experiences of families affected by the diagnosis of autism, internationally and in South Africa, will be valuable in providing appropriate, relevant, and scientifically sound knowledge to inform professionals who develop support and intervention programmes aimed at enhancing the psychosocial wellbeing and quality of life of families that raise an autistic child. This information could also be valuable in informing policies, structures, and procedures developed to effectively manage children with autism in the South African health and educational sectors.

A rapid review was conducted to answer the research questions. This consisted of systematic and explicit search and review methods that enabled the reviewers to identify, select, and critically appraise relevant studies to include in this study [39].

3.5. Data Synthesis and Analysis

A thematic synthesis was conducted in order to inductively analyse the findings from the nine retrieved studies. Thomas and Harden’s (2008) [41] steps were used in order to do this. These steps involved becoming acquainted with the data and preliminarily coding the findings. Thereafter, themes were identified, reviewed, given their final labels, and described.

Fig. (1). Selection process.

The data-extraction process was carefully planned in order to ensure that data were extracted accurately. For further contribution to the accuracy of the study, both the researcher and the study leader read all the included studies [41]. This process was independently conducted by the researcher and study leader in terms of exploring, summarising, and synthesising the findings from the selected studies. The following three stages were followed: line-by-line coding of the findings, organisation of findings into related areas to construct/descriptive themes, and development of analytical themes [41].

As this study did not carry any risks, ethical clearance was sought from the Community Psychological Research (COMPRES) before the research commenced. Research approval was also obtained. In addition to adhering to the research protocol, the authors applied the guidelines provided by Wagner and Wiffen [42] to ensure accuracy and transparency, as well as to avoid duplication, fabrication, falsification, and plagiarism. Validity and reliability were promoted by following the steps in the research process in a thoughtful and reflective way. Furthermore, only articles that received ethical clearance or served as no-risk studies were included in the review. In order to ensure the credibility of the data, crystallisation was utilised; this meant that more than one reviewer worked on the material as each reviewer has a different viewpoint, in order to discover similar themes [43]. The use of four reviewers further ensured and enhanced the trustworthiness of the study.

The researcher and study leader worked together in the review process [43] Appropriate citations were included in order to acknowledge the authors of the studies. Furthermore, the study was submitted to Turnitin software, which tested the study for plagiarism.

The objective of this article was to explore the pre- and post-diagnosis psychosocial experiences of families that raise an autistic child. The analysis and synthesis of the identified articles indicated that the identified psychosocial experiences of the families that raise an autistic child were multidimensional and fit well within a contextual and systemic perspective. It was interesting to note in the results how the various contextual systems (individual, micro-, meso-, exco-, and macrosystem) interactively influence one another and play an integral role in the psychosocial experiences of not only the autistic individual but also the family and caretakers as part of the microsystem. The integral role that families play in raising an autistic child is increasingly acknowledged and confirmed. The family is the primary support system for these children and the responsibility in this regard stretches over a lifespan. It is clear that the psychosocial wellbeing and quality of life of these families, together with the contextual systems involved, are increasingly becoming the focus of research attention [30]. The family quality of life (FQOL) framework had its origin [57] in this focus.

The FQOL framework provides a positive approach that seeks to improve the quality of life of families that raise a child with a disability. FQOL focuses on the “goodness of life” or the ‘conditions where the family’s needs are met, and family members enjoy their life together as a family and have the chance to do things which are important to them’ [58]. It is a multidimensional framework measured by indicators common to all families that make provision for both internal dynamics (cohesive family interactions), as well as external support, resources, and dynamics [30]. This framework is a virtuous fit for the integration and synthesis of this study’s results as it underlines this study’s argument that a better understanding of a family’s psychosocial functioning and experiences is important for the effective management of not only the affected individual but the family system as a whole as well. The outcome of the FQOL approach is that proactively supporting families with children with disabilities can build the capacity and skills for them to deal with challenges and adversities. It is further indicated that a family that is living an optimal and quality life within their home and community will be able to contribute to the ongoing stability of society as a whole [58-60]. This framework pays attention to a family’s quality of life by focusing on the following four concepts: (1) individual family member concepts, (2) family unit concepts, (3) performance concepts, and (4) systemic concepts.

The FQOL framework proposes that these four concepts interact with one another and that singly or in combination these concepts predict a family’s quality of life, which can be used to identify the family’s strengths, needs, and priorities to focus on. The first FQOL concept is the individual family member, which refers to aspects of the involved individual family members’ demographics, characteristics, experiences, and beliefs [59].

In the analysis and synthesis of the identified studies, the main individual family member concepts that influenced the families’ quality of life were the various emotions experienced by the parents and involved caregivers, with a specific focus on the grief process and the experience of loss. It was interesting to note how the individual emotions experienced by families differed pre- and post-diagnosis. Pre-diagnosis, the uncertainty about what is going on and the helplessness accompanying the uncertainty were prominent. Post-diagnosis, feelings of guilt, self-blame, and sadness were prominent. The theme of loss was especially prominent as the families verbalised that they had an intense feeling that they had lost their ‘healthy, ideal child’ and all their dreams and hopes for him/her. Other identified individual family member concepts that influenced the family’s quality of life were the changes parents had to make in their parenting styles and how the child with autism affected the individual members’ experiences of family cohesion, family role changes, and the lack of time spent together as a family. It is clear that on an individual family member level, the challenges and adversities that affect the individual family members’ psychosocial wellbeing and quality of life are vast and intense. To balance these challenges, it is interesting to take note of the psychosocial coping mechanisms the families mentioned that helped them to cope and to strive towards a better quality of life. The main coping mechanism mentioned on an individual level was how they used isolation to protect their autistic child and themselves. It was also interesting to note how the gathering and seeking of information to improve their understanding and skills empowered these families. Their quality of life was enhanced by being able to focus on small milestones and finding new meaning in what life and success are about.

The second concept is the family unit concept, which is the collective number of individuals who consider themselves to be part of a family and who engage in some form of family activities together on a regular basis [59]. The reviewed studies indicated that a higher level of family distress was experienced pre-diagnosis as families had to adapt and venture on unfamiliar terrain in attempting to deal with unpredictable and uncontrollable behaviour that impacted the whole family’s functioning. The analysed studies indicated that this family distress resulted in over-vigilant parents attempting to monitor every move of the child [20, 44, 47, 49]. This, however, negatively affects the family dynamics as a great deal of attention and care are given to the child and less to other members of the family [44, 48, 51, 52]. Family resources and support are channelled to the child with the aim of protecting and understanding; however, it negatively impacts sibling and marital relations [44, 49, 50]. Research [21, 30, 31, 33] indicates that in the early developmental years of a child’s life, the family is typically the primary environmental influence on a child, and this includes sibling relations. Studies [16, 19, 23, 27] further indicate that having a sibling with a developmental disorder can leave other children with feelings of confusion, isolation, and frustration. This also affects the parents as they are more prone to serious mental health problems and an overall decrease in wellbeing and physical health [12, 21].

The family’s social life is affected in this regard due to a lack of awareness and knowledge pertaining to autism among the general public, which often results in families constantly being judged [48, 44, 48, 52]. Some parts of society ascribe the child’s behaviour to external supernatural forces, meaning that they believe that the child’s symptoms and behaviour are punishment from the ancestors or from God [33, 34, 36, 50]. With the aim of avoiding societal judgement, families, therefore, tend to isolate themselves from societal gatherings and start obtaining information with the aim of understanding their child [52]. Studies [48, 51] further indicate that it is common for parents of children with autism to suffer from feelings of isolation and exhaustion due to society’s lack of understanding and the stigmatisation of their child’s behaviour. Families are therefore forced to give up their social lives, vacations, and personal dreams as their attention shifts to assisting their child and gaining a better understanding of the child’s behaviour [12]. Regardless of the above, when families receive the diagnosis, there often seems to be a positive effect on those affected [49] as the diagnosis offers a sense of relief. Due to families having a certain level of understanding and acceptance of the child’s situation, [20, 52, 48] receiving the diagnosis strengthens relationships, especially with their spouses. They start working together, which is emotionally rewarding and increases their emotional bond with their spouse, which results in the improvement of their parenting style and family dynamics [50-52]. In the analysed studies, it was interesting to note how the families’ quality of life was enhanced by building new support systems with other families with children with autism. The shared challenges and experiences gave a sense of belonging and acceptance that helped to enhance the general psychosocial wellbeing and quality of life of families that are raising an autistic child.

The third concept is the performance concepts, namely the formal services, support structures, and practices developed and offered to individuals with disabilities and their families [59]. Services are a range of educational, social, and health-related activities expected to improve the outcomes for the individual or the family as a whole (counselling, medical/dental care, or therapies such as speech-language therapy). The reviewed studies indicated that the lack of resources and proper support from the system resulted in families driving long distances to access treatment facilities. Furthermore, families were faced with incompetence within the health sector, as some children were misdiagnosed, referred from one place to another without any answers, and ill-treated by professionals. This resulted in caretakers and families doubting the competence, expertise, and commitment of the health professionals they had to trust with the treatment of their children [48, 52, 50]. The analysed studies indicated that they experienced that they had to ‘fight’ the system every step of the way, which had a definite impact on the psychosocial wellbeing and the quality of life of the family. This ‘not helping’ and ‘not understanding’ the families experienced from the indicated support services made them feel alone and scared. It seems that families compensated for these feelings by equipping themselves with information on the disorder, raising awareness among communities and family members, and relying on reliable social support from friends and family members who assisted them in making meaning of the diagnosis.

Lastly, the systemic concepts entail a collection of interrelated networks organised to meet the various needs of society, such as healthcare, education, and legal systems (e.g. healthcare systems and policies) [59]. On a systemic level, it was clear that families experienced the available structures and policies within the health and educational sectors as lacking. Pre-diagnosis studies indicated that the lack of social support services, as well as proper knowledge and structures within the health sector, affect the ability to obtain a proper diagnosis. This has a detrimental effect on the effective treatment of the child as a proper diagnosis is needed to guide proper and effective treatment. Upon receiving the diagnosis, families are faced with financial constraints as they must cater for the child’s treatment, knowing that it is a lifelong commitment. Few schools and educational facilities make provisions for children with autism. Those that do make provisions cost a lot of money, which leaves many families with nowhere to go to educate their children and develop their skills and abilities [61, 62]. On a societal level, these families are faced with stigmatisation and judgement on a daily basis. Society is not open to anything that is different from what they consider to be normal. They attempt to make it fit in by criticising and judging the parents’ parenting style, as well as the cultural compliance of parents with certain beliefs and traditions. General lack of social awareness results in families feeling isolated and unwelcome in society due to their child’s behaviour.

The FQOL framework indicates that these four concepts interact individually and in combination with one another to give an indication and a prediction of a family’s possible quality of life and thus psychosocial well-being. With the above mentioned in mind, it is clear that families that raise an autistic child experience challenges on all four of these levels. To address the psychosocial well-being of these families and to enhance their quality of life, it is important to pay attention to the specific challenges, needs, and opportunities on all four of these conceptual levels [59].

Although South Africa is known for good policies and legislative frameworks, the implementation and operationalisation of these policies and visions prove to be a dilemma. Although some of these policies with regard to support to families with children with disabilities have been implemented, the large number of people who need to be helped by the few service points and healthcare workers available results in many families still needing assistance. Research [62] furthermore indicates that children with mild to moderate disabilities are still being excluded from the grant service. In many instances, this means that children with autism are excluded from the grant service, which creates a huge financial burden for the parents. A study [30] conducted by Schlebusch, Dada, and Samuels in South Africa, which used the FQOL framework, found that families who received proper disability-related services were mostly satisfied with their family’s quality of life, as they were receiving support. This suggests that families that do not receive or who are on the waiting list for support are likely to feel so overwhelmed and defeated that it influences their overall quality of life.

Research confirms that raising an autistic child provides intense and unique challenges that put the involved families under severe psychosocial stress. The analysis of the identified studies indicated that in dealing with this stress, families developed certain psychosocial coping mechanisms to help them cope with difficult circumstances. These coping mechanisms include using isolation to protect their child and themselves, seeking information, finding meaning in the diagnosis, and establishing an understanding, accepting, and reliable support system.

In summary, the psychosocial experiences synthesised from the identified studies indicate that the main psychological experiences of families that raise an autistic child are a variety of emotional responses, a feeling of grief and loss, parenting challenges, and changes in the family dynamics and cohesion. On a social level, the main experiences reported were the lack of support services and how the lack of social awareness leads to the burden of stigmatisation and uninformed prejudice. Families used psychosocial coping mechanisms such as isolation, seeking information, meaning-making, and the establishment of a support system to lower their parental stress and open themselves up for experiencing positive moments.

It can be concluded that autism is becoming more prevalent both internationally and in South Africa [1]. Research is clear on the fact that the family that raises an autistic child plays an integral part in the effective treatment and management of the child’s life and future. The identified and analysed studies indicated that the psychosocial experiences of the involved families are unique and challenging. To optimise these families’ quality of life, it is important to pay attention to the various FQOL concepts and to attempt to minimise the experienced adversities and to optimise the moments of well-being and meaning in each of these conceptual fields. Evidence-based, concise intervention programmes, based on the psychosocial experiences of families that raise an autistic child, are of the utmost importance in enhancing these families’ quality of life. On an individual concept level, it is important to pay attention to the pre-and post-diagnosis emotional experiences of the affected families. Proper support and proactive counselling are important to assist with the helplessness before the diagnosis and the feeling of loss after the diagnosis. It is also important to facilitate the changes that are expected in parenting styles, family cohesion, and time spent together. In terms of the family unit concepts, the establishment of proper social support services and support groups for families and people who share the experience of the challenges of raising an autistic child will be valuable. The deliberate implementation of social awareness programmes to protect families from stigmatisation and being judged will enhance the quality of life on the family unit level. In terms of the performance concepts level, there must be clear communication and concise and consistent structure and lines of reporting and managing children with autism. Proper training and sensitising of the healthcare workers who are the first point of referral will make a huge contribution to the quality of life of these families. Lastly, in terms of the systemic concepts level, the evaluation of policies that are not implemented and utilised optimally will aid in ensuring that what we have is documented on paper and also what is happening on the ground level. The need for proper and easily accessible educational facilities and support systems could be highlighted as a crisis for families that raise an autistic child.

Therefore, through using the FQOL framework for families that raise an autistic child, practitioners will be provided with ways to think about and work towards what brings fulfilment and joy to the families they serve through viewing the parent/caregiver as the ‘expert’; during which time supportive resources must be made available in order to enable them to build their knowledge and understanding of the specific needs for children with autism. Furthermore, societal awareness and sensitivity need to be created if an autistic child is to be accepted and supported by society, and so that integration into society for families and autistic children will not be difficult.

The study limitations are based on the characteristics of design or methodology that impacted or influenced the interpretation of the findings from the research. Due to the research not involving participants, made it a no-risk study; however, limitations were still encountered.

The researcher initially wanted to conduct a qualitative study with mothers who raise autistic children; however, the recruitment of participants posed difficulties, as they are a vulnerable targeted group. Gaining ethical clearance from the community gatekeeper was therefore a problem. This resulted in the researcher and study leader re-discussing the study and deciding to conduct a rapid review instead. Some of the challenges that were present with the rapid review were as follows:

• A lack of studies that explored this specific topic/phenomenon, as most of the available literature and research focused on the pathology of autism and covered topics such as the development and increase in the prevalence of autism.
• Upon conducting the literature search and identifying studies that were applicable, the challenges identified were the age and level of functioning among children with autism as these differed. This meant that families’ experiences would be different as children grew up and families learned to adjust. The researcher and reviewer, therefore, had to ensure that the age range within all studies was between five and 18 years.
• This research was a small-scale study and was conducted within the limited scope of a master’s mini-dissertation. Furthermore, during the keyword search, it was important to identify studies that were in conjunction with the keywords searched for the studies. However, this resulted in most studies being excluded as they explored different phenomena together with the experiences of families and therefore did not answer the research question.
• This study focused on families. It is not known how parents as part of the family are affected. It is not known how siblings as part of the family are affected.
• Three of the studies explored fathers’ experiences of raising an autistic child. This might have an effect on the results as the experiences would be subjective and not encompass families’ experiences. However, when comparing the experiences, similarities and differences were noted. Furthermore, the research question aimed to explore families, parents, mothers, fathers, guardians, and caregivers.
• The search string only produced studies published between 2000 and 2019. The results of the search were limited in their scope and inclusivity regarding the representation of other elements in the research about families and autism. For example, South Africa has eleven official languages, and each offers a different cultural perspective which, partly, informs the understanding of children living with autism.
• The review focused more on cases of religious negative coping. This is a limit because there are positive coping effects of religious beliefs and practices researched from different settings worldwide. Therefore, we recommend that future systematic reviews look at intervention strategies and studies focus on both the negative and positive effects of religion in a South African context. This will be a guide for families raising a child living with autism.

The psychosocial themes identified in the analyses and synthesis of the identified articles fit in the conceptual fields of the FQOL framework, namely individual concepts, family unit concepts, procedural concepts, and systemic concepts. A deeper and better understanding of the psychosocial experiences of families that raise an autistic child within these various concepts is essential in informing scientifically sound intervention and support programmes. Therefore, a deeper and better understanding of the psychosocial experiences of families that raise an autistic child within these various concepts is essential for informing scientifically sound interventions and support programmes. The aim of these programmes and interventions should be to activate and sensitise the whole system involved so that families that raise a child with autism can experience satisfaction, joy, and quality family life. In addition, they need to be ensured of reliable, competent, and supportive professional and personal support networks that work together to raise societal awareness and sensitivity towards children with autism and especially their families.

B.K.P. and H.K.C. wrote and partly analysed the findings of the study. W.F.T. and P.E revised the manuscript. All authors have read and agreed to the published version of the manuscript.