Autism spectrum disorder (ASD) is characterised by difficulties with language, social interaction and competence as well as the presence of stereotyped repetitive behaviours, thinking and sensory features (American Psychiatric Association, 2013). There is a need for better understanding of educational processes that maximise the educational participation and success of students with ASD. In this paper we report on the perspectives of a group of Australian parents, with children diagnosed with ASD, regarding what they consider to be beneficial school practices, within the context of a program of support in inclusive schools.
Inclusive education and inclusion are terms that, although used frequently in education practice and research, are variously understood and interpreted for practice (Graham & Slee, Reference Graham and Slee2008). International legislation and conventions provide definitions of inclusion that share a focus on equity and quality and reducing exclusion in order to ensure that all students, regardless of circumstances, reach a basic minimum standard of education (Organisation for Economic Co-operation and Development, 2012). Australia's commitment to inclusion for those with disabilities is reflected in the establishment of the Disability Standards for Education 2005 (Attorney-General's
Department, 2005) and the national goals for schooling (Ministerial Council on Education, Employment, Training and Youth Affairs [MCEETYA], 2009). The importance of developing strong partnerships with families in achieving the goals of inclusive education is recognised within this framework:
Parents, carers and families are the first and most important influence in a child's life . . . Partnerships between students, parents, carers and families, the broader community, business, schools and other education and training providers bring mutual benefits and maximise student engagement and achievement. (MCEETYA, 2009, p. 5)
Home and school collaboration is considered essential to inclusive education and schooling for ‘all’ students (Deppeler, Reference Deppeler, Boyle and Topping2012). Numerous studies have established the positive association between parental involvement in school and students’ academic achievement as well as social and emotional development (see, for example, Stacer & Perrucci, Reference Stacer and Perrucci2013). Promoting parent–school collaborations ensures that consistent efforts are made to provide an effective educational program specific to a child's learning needs and acknowledges parents’ role as primary stakeholders in children's lives.
There have been several North American studies that have documented parents’ perceptions of, and satisfaction with, the education of their children with ASD. Callahan, Henson, and Cowan (Reference Callahan, Henson and Cowan2008) sought the views of parents, teachers and administrators with reference to various ASD interventions often considered to be educationally efficacious. Across the three stakeholder groups there was strong support for services that were provided in a highly individualised manner by a collaborative, competent multidisciplinary team, which used databased decisions to program for children's current and long-term success. However, on the whole, past research suggests parents whose children have ASD are not wholly satisfied with their children's educational experiences. In the United States of America (USA), Spann, Kohler, and Soenksen (Reference Spann, Kohler and Soenksen2003) found that only 36% of parents of young children with ASD were highly satisfied with the school's ability to meet their child's needs. Kasari, Freeman, Bauminger, and Alkin (Reference Kasari, Freeman, Bauminger and Alkin1999) found that just over half of 133 parents reported that their children's educational needs could not be adequately met in their current program. Again in the USA, Montes, Halterman, and Magyar (Reference Montes, Halterman and Magyar2009) found that in relation to educational and community services, parents of children with ASD were 3 times more likely to experience difficulties and 2 times more likely to be dissatisfied than parents whose children have other special needs. Ivey (Reference Ivey2004) identified the expectations of parents of children with ASD in regard to their future at school and in the community, via a survey. Parents indicated that attending school was important, but they were less optimistic that their children would be able to academically achieve, or to attend school in the longer term. Similarly, in Canada, Starr and Foy (Reference Starr and Foy2012) found that parents of students with ASD were concerned about the ability of school staff to effectively manage children's behaviour, as well as the resentful and prejudicial attitude of others (teachers and other parents) towards their children. What parents want for their children and consider effective teaching and learning practice was not sought in these studies.
In an Australian study, researchers interviewed students with ASD, their teachers, special education teachers and parents, all from the same secondary school, to investigate their school experiences (Hay & Winn, Reference Hay and Winn2005). Parents raised concerns associated with home–school communication, especially around homework and work experience programs. Additionally, parents perceived that some educational staff were helpful, but that more community and outside agency support for their children was required.
One way of determining the perceived quality of inclusion within schools is to ascertain the experiences of parents. Previous studies exploring parents’ experiences of their child with ASD in schools have predominantly focused on the barriers associated with inclusion rather than the enablers that might promote inclusion. Although identifying barriers is important, parent perspectives can also indicate what might be valuable to support young people's learning and success in school.
Research aims
The aim of this study was to identify parents’ perspectives of the educational experiences of their children, who have ASD. In particular, we were interested in what parents perceived as enablers for inclusion; that is, those approaches or strategies that their schools employed to support the needs of their child, and that they considered to be beneficial. This also included parents’ identification of support (if any) that was provided as a consequence of their school's participation in the Victorian Government Inclusion Support Program (ISP).
Method
Context
The ISP is a Victorian Department of Education and Early Childhood Development (DEECD; n.d.) initiative, which was piloted in selected mainstream schools to provide targeted support for children with ASD. Schools were selected because of their previous commitment of working with students with ASD. The four schools involved in the present study implemented the ISP differently, to accommodate local needs and utilise local knowledge. Nonetheless, across all schools consistent ISP features were to:
• coordinate extensive professional development for all staff in ASD;
• promote channels of communication between families, school and agency personnel in the support and education of the child with ASD;
• employ evidence-based pedagogy and curriculum; and
• be aware of the physical elements that constitute an ASD friendly environment (Deppeler, Sharma, & Reupert, Reference Deppeler, Sharma and Reupert2012).
Central to the program is the coordinator, a teacher with specialist ASD expertise, who works across the school to ensure that ASD friendly policies are in place. The ISP coordinator supports teachers, support staff and families to enact each student's individual learning plan. Sometimes this involves targeted, intensive intervention to support young people's participation and learning. It was expected that these pilot schools were committed to providing an optimal teaching and learning environment for the students with ASD, and so provide an ideal setting in which to identify parents’ perceptions of approaches or strategies associated with inclusive practice.
Research design
A qualitative research design was employed, based on phenomenology, which seeks to understand ‘how the everyday, inter-subjective world is constituted’ (Schwandt, Reference Schwandt, Denzin and Lincoln2000, p. 192) from participants’ perspectives. Within this paradigm, focus group interviews were used as a means of producing data via group interaction and dialogue around parents’ shared experiences of having a child with ASD in school. Such groups allow for the collection of interactive data obtained from participants in a group setting and the production of elaborated accounts of participants’ experiences (Wilkinson, Reference Wilkinson1998).
Participants
Focus groups were conducted in four public, mainstream schools: two metropolitan Melbourne schools (one primary and one secondary) and two rural primary schools (again, one primary and one secondary). A total of 14 parents (all mothers) were involved; some had more than one child involved in the ISP and so parents had a total of 16 children, all with a primary diagnosis of ASD. Several children had secondary diagnoses (e.g., attention-deficit/hyperactivity disorder or anxiety). Children's ages ranged from 6 through to 14.
Procedure
After ethics approval was obtained from Monash University Human Research Ethics Committee and the DEECD, each school was sent explanatory statements about the study to all parents who had a child with ASD. Interested parents contacted the first researcher. Focus group interviews were conducted at a quiet site on school grounds. For consistency, the same semistructured interview schedule was employed, although the interviewer was responsive to individual and contextual issues that arose for different groups. Ranging from 1 to 1½ hours in length, interviews followed a recursive style, allowing for questions to build on parents’ experiences (Wilkinson, Reference Wilkinson1998). Using the ISP to focus discussions, semistructured interview questions were posed around how the school was able to meet the learning and social needs of their children, if at all. There was no assumption that the ISP program or the school overall would meet parents’ expectations, with the interviewer (first author) located at a university, not within the school system. After making this position clear, parents were invited to speak honestly about their experiences. Sample questions included:
• What has been your experience of the ISP?
• What are some of the useful things the school has been able to offer your child, if any?
Another feature of the interviews were ‘think back’ questions that aimed to encourage parents to reflect on their children's past experiences of school; for example, ‘Think back to the start of the year, what happened then?’ All focus groups interviewed were audio-recorded, with participant consent, and transcribed.
It needs to be noted that parents across all schools did not know what ‘ISP’ referred to. Adjustments to the interview schedule were subsequently made. For example, rather than asking parents, ‘What has been your experience of the ISP?’ the question was reframed, ‘What has been your experience of the school?’ This meant that interviews were broadly focused on a range of activities that the schools used to the meet the diverse needs of students.
Data analysis
Data were analysed using inductive thematic content analysis, a process used to identify and analyse patterns and themes (Braun & Clarke, Reference Braun and Clarke2006) and consistent with a phenomenological approach. The first level of analysis examined each focus group transcript independently to determine reoccurring themes; the second level identified themes across transcripts, to identify both unique and common themes (Padgett, Hawkins, Abrams, & Davis, Reference Padgett, Hawkins, Abrams and Davis2006). Rather than frequencies, data analysis attempted to obtain a sense of overall meaning. In line with a qualitative approach, a reliance on direct quotes as much as possible was used, to ground findings and interpretations (Braun & Clarke, Reference Braun and Clarke2006). Quotes were tagged in terms of focus group number (e.g., FG1 means Focus Group One). Focus Groups One and Two were primary schools, whereas Focus Groups Three and Four were secondary schools.
Results
There was much diversity in parent voices, demonstrating that parents recognised that different teaching and learning practices are required for different students, at different times. Nonetheless, across interviews some common themes were identified:
• Acceptance: ‘They accept them as being who they are’
• Transition issues and strategies: ‘They go and meet their new classroom’
• What has worked for my child?
○ A safe and supervised space
○ Structured school and free time
○ Flexibility around timetable, curriculum and staffing
○ Providing socially attractive activities
• Collaborations
○ Schools, teachers and parents
○ The school as a ‘catalyst point’
Acceptance: ‘They accept them as being who they are’
Parents across the four focus groups appeared to be positive about inclusion. One parent argued that inclusive teaching practice benefits all students:
. . . [the school and teachers] were really working towards supporting children with Asperger's because that supports all the kids. So it teaches everyone . . . they [the school] recognised that . . . if we learn these skills, all our children benefit . . . (FG3)
One parent highlighted the importance of acceptance:
With our sons, our year 8s, they’ve all grown up through a system where integration or being unique, different, has been part of normal school life. So that was — that's his life, that we accept him and we move on. So it's not been as much as — there hasn't been such a black line between them and us and . . . being different. So they accept them as being who they are. (FG3)
However, all parents considered that inclusion was only successful when appropriate support was provided, as in this case of a specifically designed room for children with diverse needs:
They’re still participating but at the same time they’ve got their safe haven. And it works well. (FG3)
The provision of support provided parents with a greater choice regarding placement:
I think all his teachers have pushed him academically, though they may have modified work, but not too much, just sort of enough to keep him challenged . . . we weren't quite sure whether or not to send him to a special school for high school, and it's really — and we’ve still got a couple of years, but it's [student's name] teacher who actually said, ‘No, he's capable of more than just life skills’, so we decided to stay here . . . And it's working. (FG1)
Transition issues and strategies: ‘They go and meet their new classroom’
For many parents, the transition of their children every year from one grade to the next, from primary into high school, or transition from high school to the workforce or community were major and reoccurring concerns. Parents’ main concern was transition from primary into high school:
I don't think there's any support at all for high school. (FG3)
However, a number of effective strategies that schools employed to manage this transition were identified:
They do introduce them [the kids] to the teacher, they have a couple of days where they go and meet their new classroom. (FG3)
They photographed the new teacher . . . (FG3)
He had the same aide so he had somebody familiar to work with while he was getting used to the whole new classroom and the whole new teacher. (FG4)
Every couple of weeks he’d come here. He had the map . . . he knew where every room was before he came to school. (FG4)
. . . they [the primary school] do a Passport from Grade 6 to Grade 7 — I said all his faults and I said all his strengths and what he liked. I said he was going to do homework. (FG4)
The impression, however, was that successful transitions came as a result of the support and initiatives from the child's primary school.
What has worked for my child?
Parents identified various school-wide and classroom innovations that they believed were effective in meeting the needs of their children, including (a) a safe, supervised space; (b) structured school and free time; (c) flexibility around timetable, curriculum and staffing; and (d) the provision of socially attractive activities.
A safe and supervised space. A significant innovation identified by parents with primary and high school aged children, was the provision of a safe space, or, in the words of one high school parent, a ‘meltdown room’. Another parent described a school's safe space slightly differently:
They have things inside the rooms like beanbags and stuff, and they’ve got things for the kids to play with, and they’ve set up a system where they can identify when a child's getting wound up, and they’ve put processes in place where they take the child out of that environment and let them decompress. (FG2)
These ‘safe spaces’ were supervised but discreetly:
. . . the kids have their own space and there is a teacher but it is not obviously supervised. They’ve come from a big space that had — half of it was desks and bookcases and the other bit was for the kids. So this was just two rooms and [the ISP coordinator’s] office. This has worked really well because the integration staff has to be separate and the kids have their own space but they’re supervised . . . they’re supervising . . . there's silent supervision. (FG3)
Structured school and free time. Another approach for parents of primary and high school students was the provision of structured time at recess and lunch:
. . . you know, I can't even name them all, but there's a tinkering club, I think, a craft club, a chess club, there's choir at lunch time, there's lunch time tennis . . . because you know the playground is not really a great place for him, and without having — with having no friends, then he can go into a group and be accepted. (FG1)
The importance of this structure was highlighted at other times of the day as well:
. . . and she [the teacher] has set protocols, sets up his day, so he knows every hour of the day sort of what they’re planning to do, and she knows to go and tell him first if there's any changes and things, which has made a big change. (FG2)
Flexibility around timetable, curriculum and staffing. Parents highlighted the importance of flexibility, particularly in high schools. One parent for example, described the school allowing her daughter to withdraw from some subjects (such as French) to concentrate on other subjects. Another described a school rearranging her child's Year 11 timetable. This flexibility also referred to staffing:
The teacher's thinking of teaching just didn't work for [child's name]. So they pulled her out, put her in with a teacher who's more easygoing. Maybe the standard's not as high as — the expectation isn't as high. But you know what? She got all her work done. She was ahead of everybody. And as far as I’m aware, she's got great grades. (FG4)
Providing socially attractive activities. Being able to provide activities that were appealing was important to provide opportunities for social acceptance and interaction among all children. This was the case for the secondary school that provided a Wii™ and the school's approach for using it. The following exchange among three parents demonstrates this:
Parent: I know just since they’ve moved in here, they’ve got the Wii. That's been a great thing. It gives the kids — they’ve got to take turns. So it's a social thing. They’re learning to take turns. And they’re being active . . .
Parent: But the integration kid has to invite someone here . . . because it's invitation only.
Parent: It's a bribe for the kids to grab someone from outside so they can be more social and enhance their skills. There have also been some — I know the younger kids — brings them in because they want to go on the Wii. But the only way I can come on the Wii is if I’m your friend. (All in FG3)
Collaboration
Parents described the collaborations that existed between themselves and school staff and the potential for the school to serve as a conduit, or catalyst point, for collaborations with others.
Schools, teachers and parents. Parents described schools as being highly responsive to their concerns:
. . . because the school does follow through [with any concerns she has]. They, if I have an issue I’ll go up and deal with it and then I’ll get a report back to say, ‘This is what we’ve done about this issue’. (FG1)
The principal [of a primary school] just bent over backwards, and that's — you know, I’ve sort of been a little bit blown away, thinking, you know, I just feel like the whole school have gone, right what do we need for [child] . . . (FG2)
Similarly, it was important for parents to have a point of contact in the school for ongoing communication between school and home, especially in high schools:
The integration coordinator . . . that's my first contact point for everything. If there's issues that are going on in . . . then I contact [the coordinator] and I tell her. Then she talks to the teachers and then we can work things out that way. I just think there's too many teachers for me to have to ring and say, ‘Oh, dah-dah-’. (FG3)
This meant that teachers needed to be available:
The best thing is being able to talk to the teacher though, like having an accessible teacher that's got time. (FG4)
Another parent said that she would prefer to have more information about what school required from her, especially when it came to planning for meetings:
. . . I’m happy to attend meetings, and I want to attend meetings or support, but you know, what's the purpose of the meeting, who is going to be there and what do I need to bring, what do I need to have thought about before this meeting. (FG2)
The potential for parents to support each other was emphasised across the focus groups, including parent support groups that two of the schools offered (FG2 and FG4). Parents in rural areas described these support groups positively, whereas those in urban areas were concerned that others might gossip. In country areas this was not a problem, because, in the words of one mother, ‘We already know each other . . . there are no secrets here’.
The school as a catalyst point. The potential for schools to be a conduit or catalyst for bringing together other parents and agencies was highlighted, although not always fully realised:
I almost see this as a catalyst point, here it's like the school, I’ve almost had to sort of rely on them for information, and sometimes they’ve been able to provide it, and sometimes they haven't . . . (FG2)
. . . parents want to connect into what is available, either internally, the school, but I think you figure that out, but next layer out in your local council, local municipality, and then beyond that, and . . . the services provided, funding, and the resources, it appears to be quite fragmented, that it's almost where to start point . . . that's my problem. (FG3)
One parent requested
. . . a [school and community based] kit . . . that would just be really helpful to be able to go to a cheat sheet, because it saves time, that's the big thing. (FG1)
Discussion
The purpose of this study was to identify parents’ perceptions of the various learning and teaching strategies that they considered to be beneficial for their children with ASD. This study highlights the value of obtaining parents’ views in identifying inclusive educational practices and for providing suggestions for ongoing development. There was substantive diversity across the groups, illustrating the importance of an individualised and flexible approach for children with ASD, where ‘one size’ does not fit all. Although parents across the four groups appeared to be supportive of including their children in mainstream settings, at the same time they wanted individual and targeted support for their children, such as the availability of ‘safe’ rooms or spaces and flexibility of staffing, timetabling and curriculum offerings. Parents also recognised the potential for schools to be a catalyst point in bringing together agencies, parents and school staff.
The parents interviewed here did not understand nor use the language of the DEECD, namely, Inclusion Support Program. There are many barriers that prevent parents from being involved in their children's education, including time and economic constrains, lack of confidence in school settings, as well as language barriers and problems in understanding school decision-making processes (Stacer & Perrucci, Reference Stacer and Perrucci2013). On the basis of this study, we suggest that educators need to be cognisant of the way in which language may impede parents’ understanding of school processes and the need to clarify policies to those outside of the teaching profession. In the focus groups we modified the interview schedule to better illicit parents’ feedback; had we continued with the term ISP, we believe parents would not have been able to contribute meaningfully to the interview discussions.
The parents interviewed suggested that good teaching practices for students with ASD were good teaching practices for all students. It is widely accepted that the conditions required for successful inclusion include those that contribute to overall school improvement (Davis & Florian, Reference Davis and Florian2004). Such views are in line with a body of research in which pedagogy is not based on diagnostic categories (Davis & Florian, Reference Davis and Florian2004), and suggests that what works for children with ASD is likely to make learning more enjoyable and effective for all students. Based on a systematic review, Davis and Florian (Reference Davis and Florian2004) concluded:
. . . that questions about whether there is a separate special education pedagogy are unhelpful given the current policy context, and . . . the more important agenda is about how to develop a pedagogy that is inclusive of all learners. (p. 6)
This research is in accord with the beliefs espoused by the parents interviewed, who used these beliefs as an endorsement for inclusion, not only for their own children, but for all students.
Parents were supportive of inclusive educational settings, but they also advocated a distinct needs position, best typified by the work of Norwich and Lewis (Reference Norwich and Lewis2007). Norwich and Lewis focused on the commonality–differentiation approach to teaching, which incorporates the educational needs common to all learners, needs specific to groups of learners, and needs unique to individual learners. Likewise, parents acknowledged students’ difficulties in social communication and interaction, and preferences for routine and predictability, which necessitated environments that provided a ‘safe space’ that was discreetly supervised. Although parents wanted their children to attend mainstream schools, they indicated that their children had specific needs that needed to be acknowledged and addressed.
Transitions for children were problematic, particularly when moving from primary to secondary school, a theme that resonates with previous literature. Forlin (Reference Forlin2013) summarised research in this area by pointing out that ‘transitions are poorly organised, lacking in accountability, subject to local determinants, and, in most instances, relying far too heavily on mothers to seek out support for their children during pertinent changeover times’ (p. 2). This study adds to available literature by articulating various practical approaches that mothers considered to be successful in supporting their children in transition (e.g., physically orientating students by providing them with a map of the school).
Parents perceived various teaching and learning arrangements to be especially beneficial for their children, including structured time during free periods (such as lunchtime special interest clubs) and daily teaching routines. Staff flexibility ensured that students were matched to staff who parents considered to be better suited to their children. These results extend previous research that focused predominately on the problems parents experienced for their child with ASD (Hay & Winn, Reference Hay and Winn2005; Kasari et al., Reference Kasari, Freeman, Bauminger and Alkin1999; Montes et al., Reference Montes, Halterman and Magyar2009; Spann et al., Reference Spann, Kohler and Soenksen2003; Starr & Foy, Reference Starr and Foy2012).
The provision of socially acceptable activities via technology (in this example, a Wii) is of interest given that Hoppestad (Reference Hoppestad2007) found various technological tools are not always provided for those with a disability. In this study, parents described the use of technology to promote social participation. Although it is difficult to ascertain how teachers supplemented access to technology with explicit social skills teaching, it would appear that technology is not simply made available, but instead follows a framework where the students’ needs and learning outcomes are targeted (in this case, students with ASD and their social needs), a technology is selected (the Wii) and opportunities are created to integrate technology with learning opportunities (see King-Sears & Evmenova, Reference King-Sears and Evmenova2007).
Parents highlighted the importance of collaboration with others, including teachers, other parents and community services. Similarly, parents described the potential for schools as a catalyst point or conduit between different stakeholders. The collaborative relationship that parents described were reciprocal in nature, with information and support coming to and from parents (e.g., parents providing information to the teachers about their child, giving other parents support, and obtaining assistance from outside agencies). The unique knowledge that parents offer is needed in making visible (mis)understandings and clarifying school processes and can make a powerful contribution towards developing teaching and learning. Simultaneously, schools need to develop respect and trust in order to elicit parent contributions (Deppeler, Reference Deppeler, Boyle and Topping2012). Parents in the current study clearly saw the potential of schools to be a catalyst point for working with others, gaining information and coordinating what one mother described as a ‘fragmented’ system.
Collaboration between schools, health professionals and others is increasingly regarded as effective in mobilising knowledge and support and strengthening school capacity to respond to diversity (Muijs, West, & Ainscow, Reference Muijs, West and Ainscow2010). Parents in the present study highly valued their actual (as well as potential) collaborations with school staff and others, which resonates with Zablotsky, Boswell, and Smith (Reference Zablotsky, Boswell and Smith2012), who found a positive correlation between parental–school contact and parental school satisfaction. Thus schools might consider how they could seek partnerships with other community providers, which will expand school capacity to improve parent engagement and positively impact on student outcomes (Zablotsky et al., Reference Zablotsky, Boswell and Smith2012).
Despite parents’ lack of awareness of the ISP, parents identified various approaches and strategies for inclusive teaching and learning environments for students with ASD. It is difficult to ascertain whether these provisions were a direct result of the ISP program and/or associated with the inclusive education ethos of the school (these schools were involved in the ISP on the basis of their commitment in this area). Nonetheless, it can be argued that with support and resourcing (as provided by the ISP) mainstream schools are able to deliver a beneficial and, according to parents’ perceptions, an inclusive education environment for students with ASD.
Limitations and future research
This study is limited to the perspectives of 14 mothers (not fathers) who do not necessarily represent the views of all parents with students with ASD. Data were drawn from a select group of schools involved in the ISP, and parents in other schools may have different experiences. Focus group interviews have limitations, including participants’ possible reluctance to disclose pertinent information in a group and the potential for group bias (Merton, Fiske, & Kendall, Reference Merton, Fiske and Kendall1990). Classroom observation studies and studies that seek the alternative views of students and teachers might generate different results. Children's secondary diagnosis may be important to consider in future research. As parental satisfaction makes no guarantee that children's needs are being adequately addressed (Whitaker, Reference Whitaker2007), future research might explore the impact of parent–school–community collaborations on student outcomes.
Implications and conclusion
This study demonstrates the importance of eliciting parental expertise when supporting children with ASD, especially for identifying solutions rather than problems. Many of the practical teaching and learning practices identified here have implications for developing and improving schooling. Practice and policy needs to promote the catalyst role of schools in bringing together parents and other stakeholders. Finally, the study highlights the capacity of mainstream schools to deliver innovative and educationally beneficial provisions for students with ASD.
Acknowledgements
These data were collected and analysed as part of a project undertaken for the Victorian Department of Education and Early Childhood Development (DEECD; 2012–2013). We would also like to acknowledge Kate de Bruin for assistance with some of the focus group interviews and Vanja Radojevic for administrative assistance.
