Knowledge and belongingness: experiences of a programme for parents of children with autism

ABSTRACT

Background

Whilst lack of social support has been associated with stress for parents of children with autism, group programmes for parents which bring together those with similar experiences and provide learning and resources can offer a form of social support. Although studies of such programmes suggest positive outcomes, including in terms of children’s adaptive behaviour, research examining parental perspectives on interventions that set out specifically to provide support to reduce stress in parents of children with autism is still scarce.

Purpose

Set in a Swedish context, the aim was to investigate whether a group education programme for parents of children with autism could be viewed as a site of informal social support and considered fertile ground for procuring social capital.

Method

Participants were parents of children who had been given an autism diagnosis at around three years of age. They had all taken part in a group education programme designed to facilitate experience-sharing in meetings between parents. The parents were interviewed about their experiences and perceptions of its influence on their everyday lives. Data were analysed qualitatively, using a Community of Practice lens.

Findings

The in-depth analysis indicated that, according to participants, the programme had helped alleviate feelings of isolation and improve parenting confidence. The findings speak to the importance of personal investment for knowledge acquisition and implementation, demonstrating the connections between the acquisition of social capital and membership of a Community of Practice.

Conclusion

Building on previous research emphasising the role of social support for the quality of life for parents of children with autism, the study highlights how a parental group education programme can represent a valuable social setting which is conducive for learning and resource procurement. Knowledge and belongingness in a social community – which enables access to, and sharing of, resources – are both of crucial relevance to outcomes and quality of life for families.

KEYWORDS:

• Autism
• children
• parents
• preschool
• Community of Practice
• parental group education programme

Introduction

This article reports on a study which seeks to contribute to the literature on intervention programmes specifically developed for parents of children with autism. It discusses a parental intervention which was designed, in part, with the aim of offering a social context in which learning could take place. Building on previous research highlighting the significance of social support in terms of quality of life for parents of children with autism (American Psychiatric Association, D. S. M. T. F., & American Psychiatric Association 2013), the study focused on a group education programme which was offered to parents of children who had been given an autism diagnosis at around three years of age. It followed up on the outcomes of the programme from the parents’ perspectives. Building on existing knowledge about the situation for families of children diagnosed with autism, the study worked from the assumption that both knowledge about autism and belongingness in a social community – which enables access to, and sharing of, resources – are of crucial relevance to outcomes and quality of life for these families.

Set in Sweden, the study was undertaken in a country in which children with autism and their families are eligible for support and in which preschool constitutes an important environment in children’s everyday life, as the vast majority of all children between the ages of one and five attend preschool and spend most of their time there (Swedish National Agency for Education 2019). Connectivity between home and preschool environments is, thus, essential for the quality of everyday life for both children and their families. Before presenting further detail about the study itself, we situate our work within the relevant literature, outline the study context and set out the conceptual approach underpinning the research.

Background

Supporting parents of children with autism

Children with autism are a very heterogeneous group (Gillberg 2010). Current research suggests that early detection and early intervention for children with autism is important for better outcomes in child development (Dawson et al. 2010; Mozolic-Stunton et al. 2020; Rogers et al. 2019). For example, appropriate intervention may boost outcomes in relation to living independently and friendship (Fein et al. 2013; Orinstein et al. 2015). According to a recent review (French and Kennedy 2018), early intervention methods focused on children with autism have shown variability in positive outcomes for the group as a whole.

The role of parents of children with autism is consistently emphasised in previous studies with positive outcomes (Zwaigenbaum et al. 2015), thus placing particularly high demands on parents. At the same time, having a child with autism has been shown to be challenging for parents and siblings (Bonis 2016; Carlsson et al. 2016; Leedham, Thompson, and Freeth 2020), with multiple studies reporting increased stress in parents of children with autism (Hayes and Watson 2013; Krakovich et al. 2016; Paynter et al. 2013). Parental stress can have very negative effects on the quality of life for the whole family (Karst and Vaughan Van Hecke 2012). Having access to various resources may serve to reduce parental stress and promote positive outcomes (Lazarus and Folkman 1984). Resources can be either external or internal, with the former including, for example, social support and access to services, and the latter entailing, for example, education and level of income (Krakovich et al. 2016). In previous studies, social support has been shown to reduce the stress experienced by parents of individuals with autism (Drogomyretska, Fox, and Colbert 2020; Robinson and Weiss 2020), whilst a lack of social support has been associated with psychological stress and mental health issues for parents of children with autism (Stuart and McGrew 2009; Smith, Greenberg, and Seltzer 2012; Zablotsky, Bradshaw, and Stuart 2013). A study by Marsack and Samuel (2017) demonstrated the need for informal social support networks for parents of adult children with autism. Informal support networks can be family and friends (Marsack and Samuel 2017) but could also consist of parents with similar experiences, brought together by a formal structure such as a parental group education programme.

Group programmes for parents of children with autism have been shown to provide a source of social support for parents (Cutress and Muncer 2014; Farmer and Reupert 2013). In previous studies, the term ‘parental training’ has often been used to refer to a variety of interventions, ranging from care coordination and psychoeducation to interventions for language and/or social development (Bearss et al. 2015). Although studies of such programmes have shown positive results in children’s adaptive behaviour, and for parents raising and handling the child (Estes, Swain, and MacDuffie 2019; Nilses et al. 2019; Dababnah and Parish 2016), research examining interventions which aim to reduce parental stress in parents of children with autism is still scarce (Krakovich et al. 2016).

Study context

In Gothenburg, Sweden, young children who may have autism are identified through an autism screening at their regular check-up at the child health care centre when they are two-and-a-half years old (Nygren et al. 2012). This screening and the diagnostic stability two years after diagnosis in more than 100 young children has been presented elsewhere (Kantzer et al. 2013, 2018). The assessment process is multidisciplinary and involves several professional groups as well as parents and preschool staff. As mentioned earlier, in Sweden, the majority of children, including children with autism, attend regular preschool between 1 and 5 years of age, making the preschool environment one where the children spend a considerable proportion of their time when awake (Swedish National Agency for Education 2019).

In previous studies, parents whose children have been diagnosed with autism following the screening and assessment described above have been asked about their experiences of the diagnostic process (Andersson, Miniscalco, and Gillberg 2014; Carlsson et al. 2016; Rabba, Dissanayake, and Barbaro 2019) and society’s support. Findings indicated that parents’ expectations of support often exceeded their experience of the support given. Some parents described the failure to meet their expectations as a result of a gap between the assessment clinic and habilitation services. Variation in resources which depended on place of residence was brought up as a problem, as well, by several parents (Carlsson et al. 2016).

Based on knowledge from clinical assessments that was validated by these studies, a three-year project (from 2013 to 2016) was initiated at the Child Neuropsychiatry Clinic (CNC) with the purpose of improving the support for parents in close connection with assessment and diagnosis of young children with autism (Swedish Inheritance Fund; Project number 2012/145). The aim of the project can be summarised in the following way: firstly, to develop a parental group education course that would be offered to all parents of preschool children diagnosed with autism at the CNC, with the training offered before the child would be referred to the habilitation centre and before habilitation interventions would have been initiated; and, secondly, to examine and develop psycho-educational methods for preschool staff who encounter young children with autism, in order to increase knowledge of autism, and create practical advice and tools to manage difficult situations in everyday life. The long-term goal was to develop materials and work procedures that could be used by other units assessing and diagnosing young children with autism.

The resulting group parental programme, called My child has autism – a first step towards an understanding and a functioning everyday life, was intended to provide parents with a deeper understanding and knowledge of what the diagnosis means, to give practical advice and tools to manage difficult everyday situations, and to provide a space for parents to meet other parents in a similar situation. Consisting of five two-hour course sessions, the course was divided into the following sessions: (i) Introduction: What is autism?; (ii) Interaction and communication; (iii) Play; (iv) Perception, behaviour and problems in everyday life; (v) Societal support and summary. Led by two course leaders from the CNC (Special Educational Needs Coordinator [SENCO]) and/or psychologist and/or speech and language pathologist), the sessions mixed theoretical review with conversations in small groups or in a large group.

The first three sessions of the course built on each other and started with a theoretical review based on the theme, in order to generate knowledge about the diagnosis and comorbid conditions (language disorders, ADHD, etc.). The fourth lesson focused on perception, as almost all children with autism perceive and react differently to sensory input (Cermak, Curtin, and Bandini 2010): something that parents and preschools need to be aware of so that adaptations and support are optimally tailored to the child’s needs. These perceptions may result in self-destructiveness, aggressive and avoidant behaviours or anxiety, and may greatly affect everyday life. The last session focused on information about the legal rights of children with autism and their families. Under Swedish law, people with autism and their families are entitled to various types of financial help and support for the child and family (e.g. respite care at home or short-term stays); such support is not automatic and must be applied for.

Each lesson focused on understanding the child with autism, but also on changing and clarifying different situations to help make the situations work better. At the end of each session, parents were given a task to try at home with their child. The experiences of implementing the task were then discussed, in class, at the next session. During the programme, parents described how their child’s autism manifested itself in different situations and compared experiences. There was a slide presentation for each session and the parents received handouts in advance.

In tandem with the parents being offered the programme described above, members of staff at the children’s preschools were invited to a two-hour lecture and two consecutive training sessions. The content of the lecture was largely similar to that of the presentation offered to parents at each session. The training was led by a SENCO from the CNC and attended by preschool staff at the child’s preschool, including the preschool’s SENCO.

An outcome of the project was that the parental course, and supervision to preschool staff, was offered to all parents of preschool-aged children (i.e. up to 5 years) and to staff at the child’s preschool (including SENCOs in preschool), as part of the permanent clinical routine. At the time of writing, approximately four courses have been given each semester reaching in the region of 70 parents every year. While quantitative course evaluations upon completion of each course showed an overall high satisfaction with the course among parents, the researchers involved in the courses saw a need for evaluations that captured the parents’ perceptions of the course, and their views of its impact in everyday life six months after attending the course. To that end, the current study was designed and undertaken.

Conceptual approach

This study was informed by the concept of the Community of Practice (CoP) (Lave and Wenger 1991). Highlighting the role of social environment and community participation in learning processes, situated learning theory emphasises the importance of relational aspects in regulating the opportunity for learning by creating favourable or unfavourable conditions for learning to occur (Lave and Wenger 1991). A central concept within situated learning theory is the Community of Practice (CoP), defined by Lave and Wenger (1991) as:

an activity system about which participants share understandings concerning what they are doing and what that means in their lives and for their community. Thus, they are united in both action and in the meaning that that action has, both for themselves, and for the larger collective.

(Lave and Wenger 1991, 98)

Lave and Wenger identify three components as necessary for CoPs to develop. The first required component is a domain of interest that a particular group of people have in common. Secondly, and related to the domain, a community needs to be formed. This requires interaction and mutual learning amongst those who make up the community. The third precondition for CoPs to emerge is the practice: i.e. the activities that those involved in the community engage in together. The practice consists of regular interaction between members of the community, which gradually develops into a shared repertoire that can act as a resource for the members of the community. Being part of a CoP means undergoing a process of transformation towards becoming a practitioner. CoPs can develop organically or be consciously generated within a particular setting. They can arise in both physical contexts – for example, a workplace or a course meeting room – and virtual contexts, such as online communities or chat forums for people with a shared interest. CoPs have garnered considerable research interest within organisational studies and knowledge management research, with previous studies focusing on how to achieve, manage and optimise CoPs (Lawthom 2011; Pyrko, Dörfler, and Eden 2017; Sabah and Cook-Craig 2010). Numerous studies have focused on the positive effects of CoPs in relation to learning and innovation (Brown and Duguid 2001; Hildreth and Kimble 2004). CoPs have also been noted to facilitate implementation of new work practices and strategies (Anderson-Carpenter et al. 2014).

For its theoretical framework, the present study draws particularly on the work of Lesser and Laurence (2000), which links CoPs to social capital. Social capital is here defined in accordance with Pierre Bourdieu’s (1986) definition and refers to social relations that contribute to a person’s ability to realise their goals:

… the aggregate of the actual or potential resources which are linked to possession of a durable network of more or less institutionalised relationships of mutual acquaintance and recognition – or in other words, to membership in a group – which provides each of its members with the backing of the collectively-owned capital, a ‘credential’ which entitles them to credit, in the various senses of the word.

(Bourdieu 1986, 248–249)

Using a typology of social capital suggested by Nahapiet and Ghoshal (1998), Lesser and Laurence (2000) demonstrate the role of CoPs in developing social capital. This is of great significance to the current study, as belongingness in a social setting of relevance to the care of a child with autism can be linked to the procurement of social capital. Nahapiet and Ghoshal (1998) understand social capital as a category that involves a structural, a relational and a cognitive dimension. The structural dimension signifies the development of informal networks, through which other people with relevant resources can be identified. The relational dimension relates to trust, shared values and identification – elements that are pivotal in the creation of social capital. Lastly, the cognitive dimension refers to a shared context and language as a prerequisite of social capital creation.

Purpose

Against this contextual and conceptual landscape, the study’s overall aim was to capture parents’ perceptions of a parental group education programme and their views of its influences on everyday life six months after attending the course. This purpose was developed into research questions concerning how, according to the parents, their parenting approaches were affected by the course and how they felt the children’s preschool life was influenced. A further aim was to analyse the extent to which the parental group education programme could be seen as a site of informal social support and whether it was considered fertile ground for the procurement of social capital.

Methods

Methodological approach

As explained above, the current study set out to capture the subjective experiences of parents. Hence, a qualitative research design was deemed most suitable as the means by which to address the study’s aim and research questions. Qualitative research is dedicated to providing a greater understanding of phenomena through lived experiences, with qualitative approaches allowing a focus on describing and interpreting research participants’ perspectives (Vaismoradi et al. 2016).

Ethical considerations

Issues pertaining to participants’ privacy and integrity have been considered in all aspects of the study in accordance with the Helsinki Declaration (World Medical Association 2013), indicating the key ethical principles of respect for people and justice. The research is responsive to the health needs of the population and community in which it was carried out. Measures taken to assure confidentiality entailed the safe keeping of interview material, sharing of material being confined to the members of the study’s research group, and quotations from interviews being presented in ways that ensure full anonymity for the study’s interviewees. Written consent was obtained from participants prior to their taking part and after they had been provided with information on the study’s aims, reach and use. Ethics approval for the study was applied for and granted by the Ethics Review Board at the Sahlgrenska Academy, Gothenburg (942–15). Several ethical reporting measures were taken to ensure participants’ external as well as internal anonymity. These included removing facts that could reveal the identity of participants externally or internally among other participants, anonymising parents by assigning them numbers and removing names and genders of children in the quotations that appear in the text.

Data collection

A total of 13 parents selected from a larger group and meeting the study’s selection criteria were invited to participate. The parents had taken part in the parental group education programme six to 12 months prior to the invitation and their children had all been assessed and received a diagnosis within the autism spectrum at the CNC at around three years of age. Only parents who had taken part in a minimum of four out of the five course sessions were approached. They were selected with the aim of achieving a diverse representation based on the children’s gender, age and cognitive level. Altogether, seven parents of five children agreed to participate in the study: i.e. take part in an in-person interview. All the children of these parents (one girl, four boys) had autism; two boys had additional intellectual disability, and one boy without cognitive delay had language disorder. The remaining two children had language and cognitive abilities within the normal range. Potential participants aligning with the inclusion criteria were invited to take part in the study through a personal letter containing information about the study, its aim, and setting out the conditions of their participation. A few weeks after the letter was sent, the initial invitation was followed up by a text message signed by the interviewer, in which the potential participants were reminded about the letter and asked whether they were interested in further contact about the study or not. Based on the replies received, the researcher either went ahead with additional contact or removed the people from the list of potential participants.

At this stage, the parents who had expressed an interest in taking part in the study were invited to come to the research centre office for an in-person interview with the corresponding researcher. All interviews took place at the research centre and followed a semi-structured interview format. A semi-structured interview offers the opportunity to follow up questions when needed and be receptive to the narrative of the interviewees. Hence, it awards the researcher a level of flexibility that is advantageous when trying to capture and understand the experiences of individuals. The interview questions may be posed in any sequence which is helpful for the researcher and the interviewees, as long as all themes in the interview guide are covered (Runeson and Host 2009). Two interviews were conducted with both parents of a child (mother and father), whilst three were individual interviews with one parent (two fathers, one mother). The interviews were recorded and transcribed verbatim by the researcher conducting the interviews.

Data analysis

The analysis process was based on the steps described by Braun and Clarke (2006). It included the researchers familiarising themselves with the empirical material, generating initial codes, searching for themes, reviewing these themes, defining and naming the themes, and finally producing a report. The empirical material provided the starting point for the analysis from which the analytical concepts were retrieved (Elo and Kyngäs 2008) and data were analysed thematically; i.e. by ‘identifying, analysing and reporting patterns (themes) within data’ (Braun and Clarke 2006, 79). Braun and Clarke (2019, 593) conceptualise themes as ‘patterns of shared meaning underpinned or united by a core concept’. The significance of a theme was decided primarily with a view to whether it appeared relevant from the point of view of the study’s overall aim and research questions.

In terms of procedure, once the interviews were transcribed, they were then circulated amongst the three researchers conducting the study. All three researchers had previous experience of conducting qualitative data analysis, and the first author had extensive experience in this field. During the first step towards processing the collected data, the transcribed interviews were read individually by the authors and coded according to their relevance to the research questions. After having identified patterns and tentative categories individually, the researchers then discussed the material. Through this discussion, it was possible to extract agreed categories that could be assembled into themes and, hence, account for subjective meanings and the social reality of the interviewees (Horsburgh 2003).

Findings

The detailed analytical process described above allowed us to address the study’s research aims. Specifically, we were able to capture parents’ perceptions of the parental group education programme and better understand their views of its impact on their everyday lives six to 12 months after they had experienced the programme. In total, three main themes emerged from the analysis. The first two – (i) The benefit of meeting other parents: not feeling like you are alone out there and (ii) Receiving professional knowledge: new approaches and practices in everyday life at home – related to the parents’ needs after their child was diagnosed, as well as to the benefits of attending the parental programme. The third theme – (iii) Parents’ experiences of varying knowledge and engagement in preschool – focused on parents’ perceptions of the effects of the preschool staff’s course participation on everyday life. The main findings related to these three themes are presented below. Anonymised quotations illustrating and illuminating the identified themes are included where relevant: these have been translated from Swedish to English by the authors.

Theme (i): the benefit of meeting other parents: not feeling like you are alone out there

The analysis identified that meeting other parents with related experiences constituted a common theme throughout the interviews. Parents emphasised the value of being able to share their experiences with others who had encountered similar issues of concern in connection with their children, as indicated in the following quotations from two different parental interviews:

The nice thing was that there were other parents there./ … /You could talk to them a bit and things like that.

Nice to kind of be able to discuss with people who have been through the same kind of things and also get to do that with the autism. It was very rewarding, and we felt that it was something we possibly needed.

Several parents mentioned that the course setting provided a context of shared experience that they did not have access to in their everyday life. This was expressed, for example, in the following comment:

I thought it was very interesting to meet other parents since I didn’t have any other parents, or we don’t know any other children who have received an autism diagnosis, so it was very exciting to just get to talk, I think.

And in a similar way in this statement from another interview:

Meeting other people who are in the same situation, it gave us a lot of strength.

The opportunity to share and discuss challenges encountered in relation to their child was highlighted as important by many parents and considered to make them feel less alone with their situation. One parent concluded:

You feel like you are not alone, and I guess that is pretty important.

The fact that the encounters with other parents took part under the guidance of experienced course leaders was also highlighted as valuable by the interviewees. For instance, one parent reflected as follows:

A big advantage was to meet other parents and discuss problems and such things with the course leaders, that was a very, very good thing too. And to hear how other families handle the same sort of problems and exchange experiences!

As the parents took part in the parental group education programme relatively close in time to their child receiving an autism diagnosis, many parents had just started coming to terms with the diagnosis. One parent explained how getting to meet others and finding the words for their experiences made the diagnosis and challenges related to it feel less ‘dramatic’:

It kind of becomes less dramatic automatically just by getting to talk about it.

Theme (ii): receiving professional knowledge: new approaches and practices in everyday life at home

Alongside the benefit of getting to meet with, and talk to, other parents in a similar situation, gaining access to professional knowledge was emphasised as a major benefit of taking part in the course. The opportunity to gain a more thorough understanding of their child’s diagnosis and its implications in relation to daily life was mentioned by several parents as something they valued. For example, one parent commented as follows:

You wanted to get help understanding, what makes [name] be that way and do this and how we should act.

Another parent voiced similar views:

Getting the competence from those responsible for the course, that they describe how these various parts can manifest.

Learning about the diagnosis, how it may be evident in different situations and what approaches can be taken to manage everyday life were brought up by parents in the interviews as particularly beneficial aspects of the programme. For instance, as one parent observed:

When something goes wrong, that it is not the child’s fault, but most often we, the people around that child, have expectations on the child that the child doesn’t live up to and hence it is really our problem and not the child’s.

Specific examples mentioned in the interviews included taking care to prepare the child for changes and considering both the benefits and costs of doing certain things ahead of time:

You put more energy into what you know is difficult in general, that we learned during the course, like changes are a major thing/ … /And you noticed that it helps a lot like to start in time and things like that.

On this note, several parents mentioned that they felt that this had increased their understanding of their child and changed their approach and outlook on everyday situations. This was expressed by one parent in the following way:

We might have become more understanding towards [name]. And above all, more engaged I would like to say.

Another parent expressed similar sentiments:

We have changed our approach. We have had, we have a much greater understanding of why [name] does these things. We also found a context, that we are not alone.

Several parents stated that the professional expertise had provided them with new tools with which to support their child and, in the process, reduce their own stress levels. For example, as one parent mentioned:

How you prepare the situation to avoid it becoming a total disaster and things like that. That’s one of the things that has actually enabled us to be a lot less stressed.

A general theme in the interviews was the depiction of the combination of a parental setting with professional expertise as a facilitator. One parent likened the experience to gaining access to a springboard that enabled access to the world of autism, including families affected by autism as well as societal resources available to these families; as one parent put it: ‘Getting a springboard into this world was very helpful’.

Theme (iii): parents’ experiences of varying knowledge and engagement in preschool

As explained above, staff at the preschools of the participating parents’ children were invited to participate in autism training at the assessment and course site, as part of the project. While most preschools accepted the invitation, the extent to which all staff participated varied. According to the analysis of the parental interviews, parents felt that, prior to the training, there were varying levels of knowledge about autism among the preschool staff. Some parents expressed disappointment in the outcome at their children’s preschools, despite staff participation in training, and felt that the planning that was to be carried out at preschools following the assessment had not met their expectations. It was evident from the interview data that some discussions between parents touched on what they considered to be the uneven distribution of support from preschools, as indicated in this parent’s comment during an interview:

When we have talked to other parents, they have not experienced any problems at all, in some cases, have had a lot of help and resources at preschool and things like that, but we have not had anything.

It was the view of some parents that they had had to shoulder a lot of the responsibility for educating preschool staff; they mentioned, for instance, that members of staff would regularly ask them for advice on what to do and how to handle things related to the child. Further, some parents felt that the support given by staff could rely heavily on the special interest and/or knowledge of autism of individual teachers, which could be particularly significant if trained and knowledgeable members of staff subsequently left the preschool. Bringing in temporary and less experienced staff was described as having an immediate negative impact on children. Indeed, the general topic of staff turnover, including change of preschool managers, was brought up in several interviews as an aspect that could negatively affect the children. As one parent commented:

So, they change temporary manager, and they change staff all the time and the children are not feeling so well and not just my child, many children, and for [name] they have had a resource person for a short time.

Parents also recounted positive experiences of their child’s preschool attendance and these positive reflections often pertained to and centred on individual members of staff who had got their own personal experience and knowledge of children on the autistic spectrum. These individuals were portrayed by several parents as having played a pivotal role in terms of their child’s wellbeing and the overall situation in preschool.

Discussion

The research reported on in this article focused interest on the potential of social support for parents of children with autism. Previous research indicates that having a child with autism can be demanding for parents and siblings (Bonis 2016; Carlsson et al. 2016; Leedham, Thompson, and Freeth 2020), with numerous studies reporting increased stress in parents of children with autism (Hayes and Watson 2013; Krakovich et al. 2016; Paynter et al. 2013). This can have a negative effect of the quality of life for the whole family (Karst and Vaughan Van Hecke 2012). Studies have therefore emphasised the significance of social support for parents’ psychological wellbeing and quality of life (Drogomyretska, Fox, and Colbert 2020; Marsack and Samuel 2017; Robinson and Weiss 2020). Knowledge of the diagnosis and of how to navigate the societal support system is, furthermore, regarded as important in respect of gaining the opportunity for securing societal support (Andersson, Miniscalco, and Gillberg 2017).

Building on such research, this study looked specifically at a parental group education programme as a social setting for learning and resource procurement. The study resonates with the findings of Farmer and Reupert (2013) that parental group programmes designed to facilitate experience-sharing in meetings between parents can help alleviate feelings of isolation and improve parenting confidence. In our study, we analysed the data through a CoP lens, which allowed us to better consider the social dimension of knowledge for acquisition of various forms of societal support and resources. The study’s identified themes suggest the value and worth of a CoP to support the psychological wellbeing of parents of children with autism.

In particular, the first two themes illustrate the interplay between professional knowledge on the one hand, and knowledge founded in personal experience on the other. Analysis of the parent interviews made clear how the knowledge conveyed by professionals could be put into context, so that it became relevant in the interaction and sharing of experiences between parents. By offering simultaneous access to parents with similar experiences, and professionals with autism expertise, the parental programme provided a domain conducive to the development of a community. Indeed, it was evident from the parent interviews that some parents reported that they became good friends with other course participants and continued to meet after completing the course.

In parallel with becoming part of a community, the participating parents were also becoming transformed into practitioners. Becoming a practitioner implies an improved ability to navigate the societal system, and hence to acquire resources and secure support. In the interviews, the significance of becoming a practitioner was illustrated through parents’ accounts of supporting preschool staff in dealing with situations that can arise in the everyday care of the child. This transformation process was facilitated by a shared domain. It was enacted through a practice when the parents of the programme met and interacted and, within this process, gained a shared repertoire that could be used as a resource to secure societal support.

The third theme, related to the role of preschool staff in the programme, further reinforced the importance of personal experience in building mutual confidence and trust. Parents’ comments relating to their experiences of preschool underscored teachers’ personal experiences of autism as being pivotal for the ability to care for and understand their child. The sense of being united by a domain and being part of the same community seems to constitute an important source of trust.

As social capital affects the opportunity to mobilise resources and acquire other types of capital and resources, the study’s findings have implications relevant to practice and to future research, too. The findings suggest that it would be helpful to place emphasis on providing a social context and facilitating experience-sharing when designing interventions for parents of children with autism. If CoPs are regarded as central to the creation of social capital, and if accessing social capital can play a pivotal part in parents’ opportunity to secure societal support for their child, it follows that offering contexts that meet the criteria for CoPs should be a priority in any professional endeavour to improve support and develop new interventions for parents of children with autism.

Limitations

In the study reported in this paper, with its qualitative approach, generalisation was neither a goal nor a purpose. Rather, the study’s strength lies in the insights gained from the in-depth, qualitative analysis of rich data that we conducted. Potential limitations of the study must be borne in mind. These include the limited number of interviewees recruited from a single context. Centring on a specific context can be seen as a weakness, as previous studies have demonstrated large local variations in parents’ experiences of societal support when raising a child with autism (e.g. Andersson, Miniscalco, and Gillberg 2017; Carlsson et al. 2016). Another limitation is the lack of follow-up over time. How parents view the importance of participating in the parental education programme may develop or change over time: an aspect which this study was not able to capture, because it was outside the scope of its design.

Future research

As our research focused on a parental education programme for parents of children with autism after receiving a diagnosis, an idea for future studies could include approaching the same parents to enquire about their experiences of social support. This would be particularly interesting, considering the findings of previous studies which suggest that formal support does not always function efficiently (Andersson, Gillberg, and Miniscalco 2021; Andersson, Miniscalco, and Gillberg 2017). In addition, it would be profitable for future studies to aim to include a greater number of interviewees representing different geographical areas: previous findings, as mentioned earlier, have uncovered substantial local differences between areas. Comparative studies across different contexts would be fruitful. Longer-term follow-up studies focusing on the importance of a shared social and educational context in ensuring the necessary resources for a child with autism would also be important. Furthermore, the role of social cohesion in securing resources is a topic that should be further researched. It would be interesting to investigate too, for example, whether parental education programmes of the kind focused on in this study have beneficial effects in the longer term as well (e.g. by introducing parents to a social and knowledge community).

Conclusion

This article has investigated social support as a way of learning and securing external resources for parents of children with autism, in the context of a parental group education programme in Sweden. Analysis of interviews with parents who had taken part in a parental group education programme designed to facilitate experience-sharing in meetings between parents suggested that, from the parents’ perspectives, the programme had helped to alleviate feelings of isolation and improve parenting confidence. As such, the study offers a contribution to previous research by connecting the acquisition and possession of social capital with membership in a CoP. It highlights the importance of personal investment for knowledge acquisition and implementation. The parents emphasised the value of getting to share their experiences with other parents in a similar situation; further, parents’ positive preschool experiences were often associated with professionals who had a special interest in this area that was related to personal experience. In all, the findings draw attention to the significance of emotional involvement for cognitive learning and the practical implementation of tools in everyday life. They suggest that knowledge and belongingness in a social community – which enables access to, and sharing of, resources – are both of crucial relevance to outcomes and quality of life for parents of children with autism, and their families.

Acknowledgements

The authors thank all the parents who participated in this study and kindly shared their experiences.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

This study was supported by a grant from the AnnMari and Per Ahlqvists Stiftelse.