This is an Accepted Manuscript of an article published by Taylor & Francis in Educational Psychology in Practice on 18/04/2016, available online: http://www.tandfonline.com/10.1080/02667363.2016.1169512.
Experiences of parents whose children with autism spectrum disorder (ASD) are starting primary school Micaela Connollya & Irvine Gerschb a
Autism Services (South Lee), Brothers of Charity Southern Services, Cork, Ireland
b
School of Psychology, University of East London, London, UK
Corresponding author. Email:
[email protected]
Abstract Starting school is a critical event in a child’s life and successful transitions to school have been posited as key indicators for future academic achievement. For children with autism spectrum disorder (ASD), the process is complicated by difficulties in social communication and social interaction. Parents of children with ASD can experience their child’s transition to school as a stressful and challenging time. In this study a qualitative methodology, Interpretative Phenomenological Analysis (IPA), was used to elicit the experiences and perceptions of six parents whose children with ASD were starting school in Ireland. Semistructured interviews were carried out and a cross-case analysis was conducted. Three common overarching themes were identified which reflected participants’ experiences of the transition process; these were, a) “I think they need to believe, believe what we’re telling them”, b) “Experience of ASD / it’s a very labelling thing”, and c) “Preparing for school and feelings about the future”. Implications from the research are discussed with reference to the role of the educational psychologist (EP) in supporting parents of children with ASD in the transition process.
Keywords Autism spectrum disorder; autism spectrum condition; parents’ experiences; transitions; starting school
Introduction ASD is a complex and pervasive developmental disorder which is typified by deficits in social communication and social interaction in the presence of stereotypical and repetitive behaviours (American Psychological Association [APA], 2013). It is conceptualised as a spectrum disorder in an attempt to capture the heterogeneity in the presentation of affected individuals. The common symptoms have been described as a triad of impairments to reflect a cluster of distinctive deficits in three core areas of functioning; social communication, social interaction, and social imagination (Wing & Gould, 1979). In addition to these impairments, an individual may present with motor co-ordination difficulties (Fournier, Hass, Naik, Lodha, & Cauraugh, 2010); sensory issues; emotional and behavioural issues (Maskey, Warnell, Parr, Le Couteur, & McConachie, 2013); issues with attention and impulsivity (Sturm, Fernell, & Gillberg, 2004); psychiatric disorders (Simonoff et al., 2008), and intellectual disability. ASD is a lifelong condition and developmental outcomes are variable; while some adults with ASD achieve independence, many need lifelong support and care (Howlin, Goode, Hutton, & Rutter, 2004). Recent estimates suggest a prevalence rate of 14.7 per thousand in the general population (Centers for Disease Control and Prevention [CDC], 2014).
Context of study The present study took place in the Repubic of Ireland within a voluntary agency which is grant-aided by the Irish Department of Health (DoH) to provide multidisciplinary therapeutic team (MDT) services to children with ASD and their families. This service provides support to children in home and school settings.
Rationale Times of transition are viewed as key times for intervention for children in the service in which this study took place. The idea for the research arose when the first author, an EP, explored ways of supporting parents in the transition process; parents had identified the child’s transition to school as a difficult time and it was felt that acknowledging and understanding their perspectives would result in benefits for parents. Conn-Powers, RossAllen, and Holburn (1990) suggested that studies into reducing parent concerns during 1
transition to school would address a large gap in the empirical literature, while Kourkoutas, Langher, Caldin, and Fountoulaki (2012) recommended that parents’ experiences should be taken into consideration when designing and implementing educational and health services. Weiss and Pearson (2012) advised professionals in education to look through a family lens to ensure smooth transitions and maximise children’s success in school. Therefore, it was decided to ask parents directly about their experiences.
Literature search An in-depth search to find literature on experiences of parents whose children with ASD were starting school was undertaken, the focus of which was narrowed to include research over the ten years from 2004 to 2014. An electronic search was conducted using the online research database, EBSCO, as the host database. Selected databases included PsycARTICLES and PsychINFO, amongst others. The online database Google Scholar was used to ensure thoroughness in identifying key literature and the UK’s national doctoral thesis service, eThos, was consulted. Key search words and terms such as “children with autism / ASD starting primary school”, “children with autism / ASD transitioning to primary school”, “parents’ experiences of transitions and children with autism / ASD”, and “parents’ experiences of children with autism / ASD starting school” were used. Inclusion criteria for research literature were based on the National Institute for Health and Care Excellence (NICE) methodology checklist for qualitative studies (NICE, 2012) as a means of assaying relevance and rigour to decide what should be included in the literature review. Policy documents and legislation were consulted to provide a background to health and education services for children with ASD. The following sections provide an overview of what the search revealed in relation to transitions generally and to the research topic more specifically.
Review of the literature on children starting school Starting school has been described as a key period in a child’s development (Entwisle & Alexander, 1989). Research suggests that a positive start is critical to children’s long term well-being (Entwisle & Alexander, 1993). The literature on children starting school frequently relates to the concept of “transition” (Conn-Powers et al., 1990; Dockett & Perry, 2001; Kagan & Neuman, 1998). Kagan and Neuman (1998) defined transitions as the
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continuity of experiences that children have between periods and between spheres of their lives. They noted that children need support when making what they defined as “vertical” and “horizontal” transitions; vertical transitions occur when a child moves from one level or agency to another, as in the transition to school. Horizontal transitions are daily movements between different settings and situations. Much of the original research into children starting school focused on the notion of school readiness, a concept thought to be inherent to the child (Carlton & Winsler, 1999). More recently, there has been a shift in emphasis to a bioecological formulation, reflecting the impact of the child’s context, and the changes and relationships within that context, on the child’s adjustment to the formal school setting (Bronfenbrenner & Morris, 2006; Cowan, Cowan, Ablow, Kahen Johnson, & Measelle, 2013; Hanson, 2005; Rimm-Kaufman & Pianta, 2000). Children from low income families and ethnic minorities and children with disabilities are considered to be more vulnerable in the transition process (Alexander & Entwisle, 1988; Entwisle & Alexander, 1993; Hanson, 2005; McIntyre, Blacher, & Baker, 2006).
Literature on children with ASD starting school Transitions pose particular challenges to children with ASD. Difficulties with social interaction and communication, and difficulties generalising skills learned from one setting to another, make children with ASD more vulnerable when transitioning (Forest, Horner, Lewis-Palmer, and Todd (2004). While vertical transitions can be challenging experiences for all children, many children with ASD find horizontal transitions difficult; indeed horizontal transitions are reported to be of more concern to parents (Stoner, Angell, House, & Jones Bock, 2007). The Autism Education Trust has recommended that parents be involved in the transition planning process (Stobart, 2012).
Literature on parents’ experiences of their children with ASD starting school The family has been the basis for much of the research into children with ASD transitioning to school. Starting school represents a major event which brings along new demands and challenges for children with ASD and their families (Parsons, Lewis, & Ellins, 2009; Quintero & McIntyre, 2011; Weiss & Pearson, 2012). From a series of interviews with mothers of children with ASD in Australia, Lilley (2012, 2014) reported that parents
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experienced stigma and efforts by school professionals to exclude their children because of the ASD diagnosis. The literature review found a dearth of studies that explicitly examined parental perspectives and perceptions around their children with ASD starting school. The present study addresses this gap in the literature.
Theoretical links For the purposes of this study, the most relevant theory for the exploration of parents’ experiences of their children starting school was considered to be the bioecological theory developed by Bronfenbrenner (Bronfenbrenner & Morris, 2006). In the bioecological model, the individual is seen to be situated within multiple inter-related contexts, viewed as a dynamic nested system of relationships, the microsystem, mesosystem, exosystem, macrosystem, and chronosystem (Bronfenbrenner, 1986). The bioecological theory captures the complexity of the process of the interactions between the individual and their environment, such as in the child’s transition to school. Bronfenbrenner (1986) distinguished between normative (usual) and non-normative (unexpected) transitions. The child’s diagnosis with ASD is a non-normative event. Parents of preschool children with ASD face a number of challenges, including understanding and accepting their child’s diagnosis, dealing with the emotions and life changes that a diagnosis brings, searching for appropriate support services and interventions, and choosing optimal educational placements for their child (Cassidy, McConkey, Truesdale-Kennedy, & Slevin, 2008; Keenan, Dillenburger, Doherty, Byrne, & Gallagher, 2010; McConkey & Cassidy, 2010; Murphy & Tierney, 2006). Transition models which were developed to conceptualise the transitions to school of children with special needs (Rous, Hallam, Harbin, McCormick, & Jung, 2005) place emphasis on the role of the family as a unit rather than on the individual parental role in the process. For the purposes of the present study, an alternative lens was used as a way of viewing the parents’ position in the transition process. The bioecological model was used to position parents at the centre of the family microsystem to highlight their position. Figure 1 illustrates this perspective.
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Figure 1 Parents and child within the bioecological mesosystem, informed by Bronfenbrenner (1979)
Epistemological stance The present study aimed to elicit participants’ unique and lived experiences. Two paradigmatic frameworks informed the study. These were phenomenology (Laverty, 2003; Mertens, 2010; Smith, Flowers, & Larkin, 2009) and critical realism (Bhaskar, 2008). Phenomenology has its roots in the philosophical inquiry into the nature of the individual’s understanding of reality; specifically, their perceptions of phenomena (experiences, objects, events). Phenomenological approaches focus on the individual’s meaning-making and interpretation of events in their own lives (Mertens, 2009). A critical realist stance provided the underlying epistemological framework for the study; critical realism acknowledges the part real, part constructed nature of the perceived world (Mertens, 2010).
Method The present study was exploratory and concerned itself with the examination of the person’s life world. Therefore, a qualitative approach was considered the most appropriate. A method that fit the purpose of this study, the exploration of meaning-making, was Interpretative Phenomenological Analysis (IPA).
Interpretative Phenomenological Analysis
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“IPA is a qualitative research approach committed to the examination of how people make sense of their major life experiences” (Smith et al., 2009, p. 1). The underlying methodological stance is interpretative and idiographic, emphasising an in-depth exploration of each individual’s experience (Smith & Eatough, 2006). The researcher can also look for areas of convergence or divergence across cases to explore how meaning is constructed for both individuals and groups. IPA has been used to explore such topics as the meaning that raising a child with ASD has for parents (Jardine, 2008). The method can link “existentialphenomenological research with the wider research literature in psychology” (Shinebourne, 2011, p. 17) and fits in with the critical realist epistemological framework (Fade, 2004). IPA studies typically involve conducting semi-structured individual interviews with small sample sizes or single cases.
Data collection Ethical approval was sought and gained from the agencies involved and from the ethics committee of University of East London (UEL). The research fully complied with ethical guidelines from the Psychological Society of Ireland’s (PSI) Code of Professional Ethics (PSI, 2011a), the PSI’s Guidelines on Confidentiality and Record-Keeping in Practice (PSI, 2011b), the British Psychological Society’s (BPS) Code of Human Research Ethics (BPS, 2010), and the UEL Code of Good Practice in Research (UEL, 2010).
Participants Participants, five mothers and a father, were parents of children with ASD who were accessing multidisciplinary therapeutic team (MDT) support services from publicly-funded voluntary agencies in two counties in the Republic of Ireland. Their children were five years of age and were due to start school the following September. A sample size of six participants was considered optimal in line with the IPA methodology. Participants were selected by purposive sampling. Samples in IPA are typically homogeneous to ensure that research questions via the interview questions are meaningful to participants (Smith et al., 2009) and that the data yielded are relevant to the phenomena under review. It could be argued that the inclusion of a father in the sample would reduce homogeneity; however, the father’s perspective was considered an essential contribution to the topic, parental experiences. IPA
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allows for analysis of convergent and divergent themes and so, where perspectives are sufficiently different amongst participants, this can be explored in the cross-case analysis. Participants signed consent forms agreeing to participate in the study. Written and verbal information was given to participants detailing what was involved for them and their data.
Interview script A semi-structured interview script was devised (see Appendix) as recommended by Smith and Osborn (2003) . Questions were open and expansive (Smith et al., 2009). An expert panel of four psychologists was asked to review the interview script and the schedule was amended accordingly. A pilot interview was conducted to check the feasibility of the script. This confirmed that the interview schedule was viable and no further amendments were required.
Individual interviews The first author conducted four individual interviews and a double interview with two parents together in line with their wishes. Audio recordings were made of the interviews using digital recording equipment. These were transcribed verbatim using a word processor.
Analysis Procedural guidelines for analysis proposed by Smith et al. (2009) and Kvale and Brinkmann (2009) were followed in this study. Given that IPA is idiographic, each case was analysed in detail before moving on to the next case. The following steps were undertaken in each analysis: 1. reading and re-reading of each interview to become familiar with the data; 2. initial noting, which involved the examination and recording of the semantic and prosodic features of language use; 3. development of emergent themes, where attempts were made to reduce the amount of detail in the text and focus on initial notes. Relationships, patterns and connections between initial notes were mapped in this stage and themes (recurring patterns of meaning) were identified; 4. search for connections across emergent themes, where similarities and differences between themes were mapped; 7
5. moving to the next participant’s transcript and repetition of steps 1 to 4, and 6. cross-case analysis, where patterns of similarity and difference across cases were identified. The findings from the cross-case analysis in the study are presented in the following section.
Findings Three overarching themes were identified as outlined in the following figure. These were: a) “I think they need to believe, believe what we’re telling them”, b) “Experience of ASD / it’s a very labelling thing” and c) “Preparing for school and feelings about the future”. Superordinate and subordinate themes are presented in the middle and right columns respectively in figure 2 below.
Experiences of parents Fighting for my child I think they need to believe, believe what we're telling them
wanting to be heard / wanting to be believed Initial reaction to the diagnosis Is this the way our life is going to be now? Impact of timing
Experience of ASD / it's a very labelling thing
Construction of ASD and trying to understand how it manifests in my child Meaning of ASD Stigma / other people's perceptions Finding the right place
Preparing for school and feelings about the future
What I want for my child
Feelings about the future
Figure 2 Overarching, superordinate and subordinate themes
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“I think they’d need to believe, believe what we’re telling them” In this overarching theme, participants talked about their struggle with the educational system and with professionals as they tried to find the right educational placement for their children, to have their children understood, and to secure the supports the children needed. Maria (in all cases pseudonyms are used) described what it was like for her to deal with staff in school:
They can be quite intimidating (schools) and teachers from the school ... that can be very hard to deal with when you’re trying to .. essentially fight for your child. Olivia elaborated on the sense of having to fight for her child’s educational rights. She described having to change how she was with other people: .. It’s like fighting for your rights kind of thing; You have to push … and get a bit of a thick skin as much as you mightn’t be that person .. it’s like a different persona you have to almost be .. to fight your corner.
There was a sense from participants of not being heard and believed by professionals and extended family members about the extent of their children’s difficulties, and in some cases, their strengths. In the extract below, Maeve talks about feeling judged by others; because of her children’s behaviour, her parenting skills were called into question. She felt that even parents with poor parenting skills would not have the difficult experiences with their children that she had: I think they’d need to believe, believe what we’re telling them, not look at us as if that we’re making this up on them. They make us feel as if we’re bad parents, do you know, and we could be the worst parents in the world and we still wouldn’t be going through this.
“Experience of ASD / it’s a very labelling thing” In this overarching theme participants talked about the experience of being told their children’s diagnoses and how the timing of the diagnosis impacted on their experience of
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finding a school placement for the children. Being told that their children had ASD signified a life-changing event for some participants, introducing them suddenly to a new world of special needs and special education. This was compounded by the timing of the diagnosis, which in some cases left little time to find an appropriate school placement. Catherine describes the shock of hearing about Chloe’s diagnosis: When they actually tell you … it still comes as a bit of a blow … it’s like “Oh God” … you’re like: “What am I going to do?” You kind of see things slipping away and little things … you know, it’s hard to explain because I think you think the worst … because we knew nothing about it, you know, and they just started talking about special classes and … that comes as a bit of a … shock going “Oh my God” … you start thinking all these horrible things that will happen which might never happen.
Participants talked about what ASD meant to them and to other people and how differently their children could be perceived by others: It’s hard for us sometimes when people are telling us that she is not that far advanced or .. she should be doing this and she should be doing that because a lot of the time we just don’t see anything .. there’s nothing wrong with her to us … (Tony). Other people in participants’ lives often discounted the child’s diagnosis, maintaining that either the child needed to be disciplined or didn’t have ASD because they did not fit a certain profile. Maeve spoke about having to grapple with other people’s constructions of the condition: And I thought “Not all autistic children are like that”. They’re not, they’re very different. That’s why they’ve got a spectrum. Stigma arose as a significant concern for some participants in relation to the child’s diagnosis. Hannah talked about a need for secrecy around the diagnosis and her fear that her child would be socially excluded because of the stigma around ASD: Because he’s so .. high functioning I really want him to fit in … we told our neighbours … and we’d have family; no one else really knows because I … don’t 10
want the stigma of they … won’t invite him to playdates now or he could be excluded.
“Preparing for school and feelings about the future” This overarching theme reflected the participants’ attempts to find the right school placement for their children. For some, there appeared to be an immediate pressure to look for a suitable school placement following the child’s diagnosis; this gave little time to process the news of the diagnosis. Olivia described how life changed with the news of Cormac’s diagnosis: We went from thinking he just had sensory processing disorder then to going: “Do we have to send him to a special school?” within a week … we didn’t even have time for it to sit to go “Right”. For some participants delays in receiving the child’s diagnosis resulted in missed educational opportunities. Participants put a lot of thought into where their children would go to school, their choices being impacted upon by the information they had and the availability of suitable placements. Participants valued support from professionals. It was notable that in all cases, participants were satisfied with the final choice of placement despite their difficulties in sourcing places: So I think this is perfect for him, you know, the small school, it’s just what he needs. You can even see in everything – he’s just so confident now since he’s starting and he’s talking with his friends (Hannah).
Participants commented on their desire to communicate with teaching staff, as Hannah describes in the following extract: I’m dying to go in and talk to the teacher but I’m saying just leave him settle, you know, just take a step back a while and if there’s a problem, they come to you. (Hannah).
In her interview, it was evident that Hannah did not want to be perceived as a pushy parent.
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Participants hoped their children would fit in wherever they went to school as Olivia described in the following extract: In the end I suppose a big thing for me is that .. yeah, he’ll learn, but that he’ll cope around people and make friends. And, am, I suppose just be able to be a typical little boy as much as he can be (Olivia).
It was notable that, in this study, participants listed the following qualities that they looked for in school staff, most notably that they would be “nice”, “gentle” and “kind”.
Discussion The aim of the present study was to explore the experiences of parents whose children with ASD were starting primary school. The research literature suggested that this is a difficult time for children with ASD and their families as they negotiate the educational system, try to adjust to the changes starting school brings, and get to know new people and systems (Forest et al., 2004; Lilley, 2012; Miles, 2012; Parsons et al., 2009; Quintero & McIntyre, 2011; Weiss & Pearson, 2012). Much of the research into transitions for children with ASD takes a broad look at the child or family’s experience of transitions and has not focused exclusively on the individual parent’s experience of the transition process. The present study represents a departure from much of the previous research by yielding an in-depth insight into the experiences and perceptions of parents. Findings in this study corroborated and added to findings from previous studies, for example participants voiced their concern about stigma. Lilley (2012), in her exploration of the experiences of mothers of children with autism in Australia, found that stigma from professionals towards their children was a common experience for participants in her study. Stigma of this kind was experienced by some, but not all, parents in the present study. Participants described the experience of stigma from family members and they spoke of their fears that their children would be stigmatized by peers and other parents leading to social exclusion. Negative views of ASD led extended family members and professionals to deny the existence of ASD in the cases of some of the children in this study. Participants feared that the label had the power to change how people saw their children even though the children hadn’t changed by virtue of being diagnosed. Participants talked about the tendency
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of some professionals to either overestimate the coping abilities of intellectually able children or to underestimate the potential of less verbal children. Participants in the present study talked about preparing for school and feelings about the future. For a number of participants, finding the right place for their children was a source of effort and anxiety. The impact of the timing of the diagnosis impacted on the child’s access to appropriate places in the Irish context. Lilley talked of a “highly fractured educational field” (2012, p. 518) where participants were conflicted and bewildered by contradictory educational policies and practices. There is a sense of a similar situation for participants in the present study, where support was not guaranteed for children with ASD who did not have significant care needs and where parents worried about a lack of appropriate school places. In the event, despite the timing of diagnoses, the apparent lack of appropriate places, fears about lack of supports, and the seemingly ad hoc manner in which places became available, all participants had found places for their children which they felt were suitable at the time of their interviews. This echoed findings in the study by Parsons, Lewis, et al. (2009) in which the majority of participants were positive about school placement. Stoner et al. (2007) emphasised the importance of a child-centred focus on transitions. Parsons, Lewis, et al. (2009) found that parents of children with ASD were significantly more likely to report concern that staff had expertise and knowledge of ASD than parents of children with other disabilities. In the current study, the child-centred nature of the transition was bound up with the parents feeling understood themselves. As advocates for their children, it was important that aspects of the transition were also parent-centred and that parents felt heard. Stoner et al. (2007) found that participants focused on horizontal transitions as these have a significant impact on the lives of children with ASD. Horizontal transitions were not explicitly mentioned in the current study but participants did talk about their children’s difficulties with horizontal transitions such as the children’s difficulties coping with change. Olivia found that she had to support school staff by preparing and giving them information and materials to support Cormac starting school and help him cope with horizontal transitions. Transition practices discussed in the current study by all participants included visiting schools, providing information for the new school, and trying to prepare the children for the transition. Participants in studies conducted by Stoner et al. (2007) and Miles (2012) identified communication with school professionals as a vital link which facilitated preparation for the 13
transition. Communication between preschool and kindergarten / school teachers was noted to be an important element of the transition process in the transition process (Forest et al., 2004; Quintero & McIntyre, 2011) though meetings involving teachers did not always materialise. Communication between parents and professionals was a theme which was also identified in this study. Maria and Olivia spoke of feeling that school staff listened to professionals more than they listened to parents. There was a sense of needing to fight for their children’s rights at times, whether to get understanding for the children, to get the right supports, or to get the right school placement. Lilley (2014) spoke of the power differentials that participants experienced in their interactions with professionals. Professionals in the present study had some power over decisions made in relation to resource provision and access to school placements, factors which seemed to be outside parental influence or control. Participants spoke of their significant concerns about safety, social inclusion and bullying which impacted on school choice. For some participants, getting the right school was bound up with feelings that the child would manage and would get on better in future life. Participants described the impact of their children’s diagnosis and behaviour on their lives and for a number of participants, life was difficult and stressful. The bioecological model (Bronfenbrenner, 1986; Bronfenbrenner & Morris, 2006) has been used as a theoretical framework in research on children’s transitions to school. Studies have usually placed the child at the centre of the model within the microsystem of the family. Russell (2005) used the ecological model to frame findings at four of the levels of interaction (micro, meso, exo and macro), acknowledging the participant’s engagement in the different contexts and processes of transition. In the present study, a different focus placed the parent at the centre of the bioecological framework; parents were viewed as developing beings in their own right. The bioecological model suited the purposes of the current study as phenomenological considerations and the context in which people develop are both important features of the model (Bronfenbrenner & Morris, 2006). The conceptualisation of a dynamic interplay between subjective and objective experiences allowed participants’ concerns to be put the fore in this research; this facilitated an in-depth examination of participants’ experiences, feelings, and perceptions during the process of their children’s transitions to school and their engagement with professionals and other people in their lives. An example of how the bioecological model encompassed the interactions between participants and their context is depicted in the participants’ experience of stigma and the feelings it engendered. These experiences could be said to relate to the proximal processes of Bronfenbrenner’s bioecological model (Bronfenbrenner & Morris, 2006); proximal processes 14
being interactions between the individual and activities or others in the immediate environment. Participants were concerned about stigma and other people’s perceptions of ASD. Stigma could be seen to impact on the relationships that some participants had with family members and with others in the community, occurring at the level of the microsystem (within their own family of origin) and the mesosystem (in their relationships with professionals and others). Stigma was explored at the macrosystemic level by Lilley (2012) who maintained there was an ongoing debate in society about whether or not people with disabilities were still subject to stigma. This research shows some of the effects of the transition process on parents, the child’s primary carers and advocates. It endorses existing practices that support children with ASD and their families around the transition to primary school. In the Republic of Ireland, the Special Education Support Service (SESS) which operates under the Department of Education and Skills (DES), acknowledges the importance of including parents in the transition process in their continuing professional development programme for teachers to support children with autism as they transition through education. The transition toolkit developed by Stobart (2012) offers practical strategies to parents and professionals to support children with ASD starting school. The Inclusion Development Programme (AET, 2009), an interactive resource for educational professionals, advocates working closely with parents to ensure successful inclusion for children with ASD. In 2012, the All Party Parliamentary Group on Autism , published a report, Reforming the System for Children with Autism (NAS, 2012), which found that fewer than half of parents and young people interviewed thought they had enough involvement in shaping the support the child got at school; 30% of teachers agreed. 94% of parents thought they should be more involved in school. This survey shows that more needs to be done from the parental perspective to include parents in their children’s education.
Limitations This study was conducted on a small scale with a purposively selected, homogeneous sample. The method used, IPA, is necessarily subjective and therefore claims cannot be made to generalisability or applicability to other populations. Nevertheless, IPA is considered a valid psychological research method, accessing individual experiences with the aim of building up a case by case analysis of particular psychological phenomena. The authors attempted to minimise subjectivity by adopting a rigorous approach to reflexivity, the process by which
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the researcher attempts to acknowledge their own role in data collection and interpretation. Participants’ accounts were transcribed verbatim and attempts were made to stay close to the intended meaning of the text in analysis and reporting.
Further research questions identified An interesting finding from this study was the gap revealed in the literature around what is known about the experiences of parents of typically developing children who are starting school. Finding out about the experiences of these parents would be a suitable topic for further research. Further studies could usefully explore the experiences of parents of children with other disabilities who are starting school. A direct comparison between the experiences of parents of children with ASD and parents of children who don’t have ASD would be worthy of investigation.
Relevance to work as EP An exploration of parents’ perceptions and feelings around their child with ASD starting primary school is an area that merits analysis as it is important for professionals, service providers, and policy makers to be aware of the views and experiences of this distinct population. It has been established that the start of school is a time of major importance for all children, including children with ASD. The findings in this study are relevant to EPs as they have a potentially key role in supporting children with ASD starting school. Conn-Powers, Ross-Allen, and Holburn (1990) viewed the school psychologist as an important team leader in supporting kindergarten transition for children with special needs. They saw a need for a school transition facilitator who would support children and their families during transition, liaise between early education and formal school settings, co-ordinate transition planning, and ensure the goals and priorities of the family were included in the process. While EPs are ideally placed to incorporate the perspectives of parents in the transition process, constraints on their time mean that they may not be able to perform such roles. EPs could, however, disseminate research findings, such as those in the present study, that illustrate the perceptions of parents and could be involved in facilitating other professionals in performing the role of keyworker for parents in the transition process.
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Implications for educational psychologists, other professionals and relevant agencies A number of implications arise from the findings in this study:
1. Transitions to school for children with ASD should be parent and child-centred Parents should be central in the transition process. They are key informants and advocates; their intimate knowledge and views should be valued.
2. Professionals should be aware of the feelings parents have about their children starting school Parents may be experiencing worry, uncertainty, fear, relief and hope.
3. Professionals should be aware of the difficulty and uncertainty parents face in choosing and finding appropriate school placements for their children The child’s diagnosis with ASD may entail a sudden entry into an unfamiliar world of special education. Parents need information relating to the school system, available support and placement options. Parents may not have told many others about the child’s diagnosis so telling school staff may be a big step for them. The impact of stigma and fear of bullying and exclusion can cause worry and can impact on parents’ choice of school placement.
4. Professionals should be sensitive to the parents’ considerations in choosing school placements Parents worry about their children’s social skills and their ability to fit in with other children Social achievement may be more of a concern than academic achievement.
5. Professionals should be aware of power differentials with parents Parents can find the experience of dealing with professionals intimidating and unnerving. School staff members who are nice, gentle, and kind inspire parents with confidence and hope.
6. School staff should consider meeting with parents before and after the transition
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It would be useful for school staff to meet with parents before and after the transition to school to discuss concerns and strategies, for example, around horizontal transitions and to put support in place to ease the vertical transition.
7. Key liaison person Parents value access to, and communication with, educational staff. A key person should have the role of making sure parents are consulted and included in transition planning and process.
8. Professionals should understand the complexity of the lives of parents of children with ASD In this study, three of the participants had older children with ASD. Having more than one child with a disability can increase the challenges parents face. It would be useful for professionals to be aware of the unseen difficulties that many parents experience.
Concluding comments Given that a literature search on the subject revealed a dearth of information on parents’ unique perspectives on the topic, it is hoped the findings from this study will highlight the experiences and perceptions of parents, thereby informing practice to improve their experiences of their children’s transition to school and foster smoother transitions.
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Interview Schedule I’d like to hear about your experiences, as a parent of a small child with ASD. I’m interested your experiences and feelings about your child starting school.
1. Can you tell me something about your little one with ASD? What kind of things does (s)he like to do? Is (s)he in preschool? How is (s)he getting on there? 2. Have you chosen a primary school for her/him? What was choosing a place like? What kind of place is it? Will (s)he be getting supports in school when (s)he starts? 3. What things are important for you around her/his education? What would you like her/ him to get out of school? 4. What do you think (s)he feels about starting school?
5. What are your feelings about her/him starting school?
6. Do you feel the experience is different for parents of children who have ASD and parents of children who don’t?
7. What advice would you give to other parents in this situation?
8. What would you like the teachers and others involved to know? 9. Have I missed anything important?
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