Enabling Participation in Voice Research for Adolescent Children with Characteristics of Autism

International Journal of Student Voice

A peer-reviewed, independent, open-access journal

Pennsylvania State University

Volume 7, Issue 1                     IJSV, Special Issue                           April 2022

Enabling Participation in Voice Research for Adolescent Children with Characteristics of Autism

Emma MacRae and John O’Neill –
Institute of Education, Massey Univerity, New Zealand

 

Citation: MacRae, M., & O’Neill, J. (2021). Enabling Participation in Voice Research for Adolescent Children with Characteristics of Autism. International Journal of Student Voice, 7 (1).

Abstract: The study on which this paper is based concerned children’s sense of belonging at school. Their experience of inclusion within formal education was explored from a child rights perspective using the United Nations Convention on the Rights of the Child as a guide. Most research to date has focused on the inclusion of children with autism in education from the perspective of adults not children. As children are ‘experts’ in their own social worlds, for this study the views of children were sought directly from them regarding their everyday experience of being at school, what they believe supports their sense of belonging at school, and what aspects of their everyday schooling could be improved. Semi-structured interviews were carried out with seven children all of whom had characteristics of autism. The focus in this paper is methodological, specifically the decision framing and decision taking of the researcher about how to provide an enabling and inviting research participation experience so that children with autism feel sufficiently comfortable and encouraged to express their views. Two key considerations in the design of this study concerned: (i) participant recruitment; and (ii) interview process and procedures.

Keywords: secondary (high) school students, autism, interviews, belonging, participation

Introduction

The right to an education is specified in Article 28 of the United Nations Convention of the Rights of the Child (UNCRC). The UNCRC can be divided into protection rights [i.e. from discrimination], provision rights [e.g. to education] and participation rights [i.e. to have their say on matters affecting them]  (Alderson, 2018). Alderson argued that for children’s right to education to be realised, it cannot be seen in isolation from other UNCRC rights. Realising the right to education involves respecting a child’s right to non-discrimination (Article 2) and to have their views heard on matters affecting them (Article 12). With respect to education, providing opportunities for all children to voice their views is necessary as what is important for one child may be different for another (Alderson, 2018). Children with learning support needs have as much right as any other child to be heard. Moreover, failure to adequately consult children can be viewed as a breach of their right to have their say (Article 12), the right to opportunities within education (Article 29), and their right to have decisions made in their best interests (Article 3). The first half of the article considers the functional relationships between the right to education, inclusive education provision and the personal feeling of belonging at school for children with characteristics of autism. The second half of the paper discusses issues related to appropriate design of the research to facilitate recruitment and participation of the children in the study.

The right to education for all

The former UN Special Rapporteur Katarina Tomasevski proposed four standards to judge enactment of the right to education: availability, accessibility, acceptability, and adaption (Klees & Thapliyal, 2007). Availability of education involves parents’ right to educational choice within a system where education is compulsory and free. Accessibility refers to a child’s right to have educational decisions made in their best interests. The acceptability of education refers to the provision of quality education that meets the child’s needs. Lastly, adaption involves modifications made to the curriculum when required to meet a child’s needs.

The UNCRC entered into force in 1990, since then there have been several significant global and national developments with respect to children with learning support needs. In 1994 the Salamanca Statement came into effect, asserting that the provision of education should be designed to provide for the unique characteristics and abilities of all children not just the majority; and that all children should be accommodated within a child-centred pedagogy within mainstream schools. It affirmed the commitment of governments and international organisations to the objective of ‘education for all’ regardless of individual difference. Further support for the UNCRC right to education (article 28) was provided by the 2008 Convention on the Rights of People with Disabilities (CRPD). Article 24 of the CRPD stated that children should not experience exclusion on the basis of disability or failure of schools to provide accessible learning environments (Goodall & MacKenzie, 2019). Progress in this area has been both significant and variable.

In the last thirty years there has been a move towards greater inclusion within mainstream schools of children with learning support needs in New Zealand where this study was undertaken. The Education Act 1989 section 8(1) affirmed the right of all children to attend their local school. From 1993 the introduction of the New Zealand Human Rights Act section 57 made it more difficult for schools legally to deny, restrict, or enrol students on less favourable terms based on reasons related to their learning support needs. However, even with stronger education rights legislation in place it has been argued that exclusion on the basis of learning support needs still regularly occurs in New Zealand mainstream schools  (Kearney, 2016). In terms of attendance at mainstream schools, in 2004 of the 1% of students classified as having ‘very high needs’, 33.5% were educated in special schools. The remainder attended either mainstream classes exclusively or special education classes situated within mainstream schools (Mitchell, 2015). By 2019 it was estimated that 99.5% of children with learning support needs attended their local school (New Zealand Government, 2019).

The recommendations of the United Nations third universal review of New Zealand’s’ Human Rights Records included developing policies and strategies to support children’s right to education, and strengthen school inclusive education practices (New Zealand Foreign Affairs and Trade, 2019). Most recently, the Education and Training Act came into effect 1 August 2020 which increased New Zealand’s policy alignment to our UNCRC commitments. Clauses 32 and 33 of the Act state that all children should have their right to education honoured, which includes the right to attend school full time, free of charge.

Children with autism

The term autism reflects a broad heterogeneous and diverse group of people all with unique strengths and challenges. Accordingly, the term children or young people with autism was used throughout this research report rather than reference to sub-classifications of autism (Scott-Barrett, Cebula, & Florian, 2019). Language can be powerful, therefore describing children as being on the autism spectrum was avoided as this can have negative connotations. Those described as high functioning may simply be better at masking or compensating for their challenges. Use of the term high functioning may have the effect of underplaying difficulties experienced or a person’s need for support (Goodall, 2019). Equally describing someone as having low functioning autism can ignore the person’s strengths. Both terms can potentially be seen as negative stereotyping rather than viewing a person’s diversity as something positive (Goodall, 2019). All children with autism can be described as both low and high functioning depending on the situation and circumstances. For example, children with autism can have in-depth knowledge about specific topics so instead of viewing their thinking in terms of rigidity it can be seen in terms of clarity of thought that allows intense focus, reliability, dedication, determination, honesty, and original thinking (Winter & Lawrence, 2011).

Autism is thought to have a strong genetic component but as there are no biological indicators behavioural criteria are used for diagnosis (Sturmey & Fitzer, 2007). As a group, children with autism often experience challenges interacting socially, communication, and flexibility in thought and behaviour. Additional challenges can include poor motor skills and displaying a lack of empathy as children can find it difficult to understand what others might be thinking (Scott-Barrett et al., 2019; Winter & Lawrence, 2011).

Although there are commonalities, no two people with autism present with exactly the same symptoms, in the same way, or to the same degree. This can be attributed to approximately 70% of children with autism experiencing comorbid conditions such as ADHD, OCD, anxiety, or depression (Scott-Barrett et al., 2019). In terms of diagnosis for Autism Spectrum Condition (ASC) there is a gender bias with four males to one female diagnosed (Baron-Cohen, 2008). Girls tend to be underdiagnosed as they often have more developed expressive behaviours and some argue are better at camouflaging their autism when around others (Goodall & MacKenzie, 2019). In America, one in 150 children are diagnosed with autism. In the United Kingdom this rate is estimated to be 1 in 100; making autism one of the most common childhood conditions (Connor & Cavendish, 2020).

There is some debate over whether Asperger’s (AS) should be included on the ASD spectrum. AS often has a later onset when compared with classic autism. Those with autism will often avoid social contact and be preoccupied with repetitive motor activities. Children with AS can also seem preoccupied but intellectually rather than with objects, and they will seek social interaction with others but often in an awkward manner. For this research study the term autism was used to include children with the full spectrum of autism including AS (Scott-Barrett et al., 2019).

Children as rights’ holders

If children do not have the opportunity to exercise their rights they cannot be seen as a rights’ holder (Fortin, 2009). Children can be enabled to be holders of rights by giving their voices due weight. Within the realm of education, children can be seen as experts of their own experience (Goodall, 2019). Seeking children’s views on school and education policy, and providing avenues for genuine influence, can undoubtedly provide education better suited to their needs (Goodall, 2019). Policy and school practices affect a child’s sense of self. Therefore it is important that children help to inform the policies and practices that are meant to serve them (Bourke, O’Neill, & Loveridge, 2018).

Lundy (2007) developed a model of participation to support children’s right to have their say. It includes four key terms: Space for children to express their views, Voice; the opportunity to speak, Audience; listening to the child’s views, and Influence; acting on these views where appropriate. A report of the New Zealand Office of the Children’s Commissioner (2018) found that children would like greater consultation on school matters that affect them. Children’s right to have their views heard (Article 12) is considered to underpin all UNCRC rights and is integral to children realising their convention rights (Sargeant, 2018).

The right of children to inclusive education

Inclusion within education can be defined as educating all children including those with learning support needs within the same classroom. However, presence within a classroom does not automatically translate to educational inclusion (Ainscow, 2005). Children with autism, like all children, have a range of academic abilities. A mainstream school environment will not automatically suit a child’s needs even when academically able. Teacher understanding and knowledge, sensory needs, social aspects, and the layout of the school environment are some factors that can act as barriers to student inclusion (Goodall, 2019).

Integration involves placing students with learning support needs in mainstream schools and expecting them to adjust to existing norms and practices, whereas genuine inclusion involves principals, teachers, and support staff translating macro-level educational policy into micro-level school practices and values. These micro-level changes in how educators think about students can be observed in teacher’s language and daily teaching practices (Rutherford & MacArthur, 2018). Inclusion requires treating all children equitably, avoiding discrimination, marinization, and celebrating differences where all children are considered to have their own individual “special needs” (Alderson, 2018).

Genuine inclusion may require structural changes to the physical school environment and modification to teaching methods not simply placing children with learning support needs in mainstream classes (Goodall, 2018). Alderson (2018) suggests that the existence of special schools provides mainstream schools with the opportunity to send students somewhere else when they are not fitting in, instead of the necessity to explore ways the school culture and practices can change to become more inclusive.

Not all researchers share this view. Goodall (2019) suggested that the existence of special education schools provides learners with a choice as to the type of environment that best suits their needs. He suggests that the sensory and emotional needs of some students are better served in a special school environment. For some students, this environment can result in greater engagement with learning which in turn can result in students experiencing a greater sense of personal wellbeing and positive attitude to school.

Children’s experiences of inclusion and belonging

To date autism research looking at the right of children to inclusion within education has focused largely on the views of teachers and parents (Goodall, 2019). To gain greater insight into what inclusion at school means to children and what their everyday experience of being at school is like it is essential to hear directly from children (Ellis, 2017).

In a study by Goodall (2019), twelve students aged 11 to 17 children, who all attended a special education school, described inclusive education in terms of how they felt at school rather than a specific type of school. They described inclusion in terms of feeling respected, valued, and accepted by other children and teachers. They felt that when they compared their experience of attending a mainstream school to the special school they currently attended, the special school environment provided a greater feeling of inclusion. The children acknowledged that although not always possible, their ideal was to attend a mainstream school effectively set up to cater for their needs.

One of the key insights from the Office of the Children’s Commissioner (2018) Education Matters to Me report was that not singling out children in terms of a deficit or label supported their positive sense of belonging at school. Children reported that it was important for them to be identified in terms of being a child rather than a label or deficit. This finding was supported by MacArthur et al. (2007) who interviewed 11 to 14 year old children with autism on their experiences of school and self-perception. Children described themselves as any other child would in terms of their appearance and personality. They actively tried to emphasis their similarities to peers rather than differences, to the extent that some children avoided using materials such as computers that marked them apart. Some of the ways students perceived themselves as different included being asked to complete lessons in separate classrooms, with a specialist teacher, and having a teacher aide help with work. Kelly (2005) also interviewed 32 children with learning support needs about self-perception. Some students viewed themselves as different due to learning support needs, how they acted, or their appearance, while other students perceived themselves in terms of typical personal characteristics such as being overweight or not having ears pierced.

Children with autism identified low teacher expectations as a barrier to their sense of belonging at school. MacArthur et al. (2007) found that this negatively affected the self-perception of children with learning support needs. Some children reported they felt different from their peers as their teacher gave them less challenging work. Others wished their teachers would provide challenging work and more support to enable them to extend their learning. The study found some teachers were good at supporting children to extend their learning. With other teachers’ students reported instances where they felt they had to prove their academic ability to counter a teacher’s presumption of low academic ability.

Several positive teacher characteristics that support inclusive teaching practices were also identified by children. Forty American high school students with Individual Education Plans were interviewed by Connor and Cavendish (2020). Characteristics identified by interviewees included teachers who were ready to help, were non-judgemental of students, did not expect all students to learn in the same way, were positive, and provided students with time. Two thirds of students thought that a good teacher was able to teach concepts in a variety of ways and was firm yet fun. Students also identified that good teachers could ask questions to check student understanding, provide individual student attention, present learning plans visually as well as verbally, and allow for different mental processing speeds by not going too fast when teaching new concepts. In semi-structured interviews with children who have autism, interviewees said teachers providing access to breaks when required and allowing for lessons to be structured around their interests helped them to maintain focus when completing learning tasks (Zilli, Parsons, & Kovshoff, 2019).

One of the key findings of the New Zealand Education Matters to Me research conducted by the Office of the Children’s Commissioner (2018) was that for children with learning support needs large numbers of students in a class acted as a barrier to learning engagement as this often resulted in too many distractions which made it hard for these students to concentrate in class.

Students in research conducted by Rutherford and MacArthur (2018) expressed a desire for greater privacy from their adult helpers as they felt their presence interfered with their peer relationships. Relatedly, Watson et al. (2001) found that although children with learning support needs can find school work challenging they like autonomy when interacting with peers during break time.

In terms of experiencing a positive sense of belonging at school social relationships with peers was found to be extremely important. Children with learning support needs commonly reported a lack of friendships, bullying, and feelings of social isolation outside of school (Sproston et al., 2017). In interviews conducted with two teenage girls with autism Goodall and MacKenzie (2019) reported similar findings. Both girls reported finding mainstream school difficult as they felt excluded, unhappiness, anxiety, and isolated. According to the interviewees large class sizes, noise, having to attend school for full school days, and finding morning tea and lunch times stressful due to the unstructured social time were all factors they identified that lead to their negative feelings around school. In addition, bullying was their top worry whilst at school. Both tried to build relationships with peers, but bullying led to feelings of loneliness and isolation. Research conducted by Humphrey and Symes (2011) supported the importance of social relationships for children with autism. Challenges interacting socially placed them at greater risk of negative social outcomes, resulting in this group being 20 times more likely to be socially excluded than children without autism, up to three times more likely to be bullied, face social rejection, and feel unsupported by other children (Humphrey & Symes, 2011).

Research design

The methods used directly affect how children with autism are understood and ultimately supported to participate in research (Brown, Peña, Broido, Stapleton, & Evans, 2019). The personal views and experiences of children with autism were sought about what supports their sense of belonging at school and what could be improved for them. A well established and important aspect of qualitative research involves the ability to build relationships, trust, and rapport with all types of participants including children (Cridland et al., 2015). Understanding participants preferred means of communicating, strengths, and needs leads to the development of methods that are more appropriate for participants which ultimately results in the collection of richer data (Goodall, 2019). Maintaining an awareness of the power imbalance between the interviewer and participant and thinking about ways in which participants can be supported to feel more comfortable and taken seriously as experts on the interview topics (Goodall, 2019).

Semi-structured interviews were used to allow for conversation to develop and flow, and to gain insights into participant’s experiences, opinions, and beliefs (Gill, Stewart, Treasure, & Chadwick, 2008). The research was initially discussed with learning support co-ordinators (LSC) at several potential schools in terms of children’s inclusion. After feedback from one LSC it was decided to frame the research in terms of belonging rather than inclusion because the LSC stated that “children at their school only know about being at school not inclusion at school” (LSC, personal communication, June 18, 2020). The design considered how to optimise participant accessibility by thinking about needs that are common to children with autism in order to support and enable the participants to communicate and have their views heard (Fayette & Bond, 2018).

Provision of appropriate information about the research in advance was a major consideration. Written information about the research study was provided to potential participants (i.e. children and their parents or caregivers). This also contained a link to a ‘Belonging at School ‘YouTube channel specifically created by the researcher to provide additional visual and verbal modalities by which children could access information about the research. The video included a demonstration of some of the interview activities. Children with autism often experience social and environmental barriers in situations, so knowing what to expect during the interview and the opportunity to see the interviewer in advance on YouTube was intended to help to minimise these barriers (Cridland, Caputi, Jones, & Magee, 2014).  In addition, the support organisation Children’s Autism Foundation (CAF) agreed to set up a ‘Supporting Research into Autism’ page on their website. The webpage provided details about this research, a copy of the information sheet, and a link to the Belonging at School Research YouTube video. A link to the YouTube video was also provided in a post on the CAF Facebook page.

Criteria for participation in research included students having characteristics of autism but not necessarily a formal diagnosis. Participants recruited from schools were identified by the school learning support co-ordinators or teacher. Self-identification was allowed for with children who decided to participate after seeing information on the CAF website or Facebook page. To be eligible for participation in the project it was also an expectation that participants were able to understand and verbally respond to the research questions.

A copy of the semi-structured interview questions was provided before the interview to give students the opportunity to read through the questions and clarify anything they might be unsure about before the interview (Sachse et al., 2013). This can help some children with autism feel more secure and be beneficial for participants who require greater mental processing time. Participants could also contact the researcher in advance of the interview with any questions they may have related to the interview or interview process.

The combination of factors that make up an ideal interview space for children with autism were also considered. Factors included sensory noise, lighting, privacy, strong odours, and sitting at eye level but not making constant eye contact as this can be too confronting (Cridland, Caputi, Jones, & Magee, 2015). As the interviewer was a visitor to the schools where the interviews were conducted, control over the interview space was limited. Even so it was helpful to reflect on the potential needs of participants when entering an interview space.

The pressure of the interview situation can be an additional barrier to participation in research for children with autism. To address this, multiple means by which the children could express themselves during the interview were provided. It was thought that providing different options for responding could help some participants minimise anxiety they may have when they are only given the option to respond verbally (Bagnoli, 2009). Honeybourne (2015) believed that interview schedules consisting solely of open-ended questions are not necessarily an effective way to elicit information from children. The provision of multiple response modalities can also provide a joint focal point for the participant and interviewer, as it can take the emphasis off face to face verbal communication (Goodall, 2019). Additional means of responding selected for this study included options to point to answers, physically moving around to stand on A4 numbers, and writing or drawing responses. For, the ‘How do you find being at school?’ question students were invited to bring a drawing to the interview. This was not only done to aid in building rapport but also to help prompt conversation if required for other interview questions. Children who did not bring a drawing had the option of drawing or writing about how they see themselves at school in addition to answering verbally during the interview.

The Interview schedule

Several activities were purposefully incorporated into the interview as doing so has been found to reduce the intensity of the interview process for some children (Mauthner, 1997). The interview schedule consisted of open-ended main theme questions and subsequent follow up questions designed to clarify initial answers or prompt for additional information when required (Kallio et al., 2016) (Picture 1). Warm up questions were based around non interview topics. These were used to ease into the interview questions and minimise participant nervousness.

Picture 1: Interview schedule

  • Tell me about who is in your family?
  • What sorts of things do you like doing?
  • What other things are you interested in?
  • How else would you describe yourself?
  • Would you say anything else if you were describing yourself to a new teacher?
  • What do you think about school?
  • Participant can give a score out of 10 – this can be interactive with the participant standing on big numbers set out on the floor or verbally giving a score out of 10.
  • What is being at school like for you?
  • Children were asked in the information sheet to bring to the interview a drawing showing what being at school is like for them. This was optional. For children who did not bring a picture they had the option to draw a picture during the interview. It is also suggested that they could add words around the drawing. For children who did draw a picture they are asked to explain and describe their picture from their perspective.
  • The next question is interested in your views of what makes school a good place to be.
  • What do you think is a good word to use when you feel school is a good place to be?
  • If the participant come up with their own word use this in place of the word “belonging”.

For the next question you are welcome to draw or write your respond as well as verbally tell me what you think.

  • What does belonging mean to you?
  • Follow up question if needed: What else needs to happen for you to feel a sense of belonging when you are at school?
  • The next questions are interested in hearing about what your think your teachers do well and potentially could do more of to help you with your learning.
  • What do your teachers do that helps you with your learning?
  • Is there anything that you would like your teacher to do more of?

 

 

Comment on interview schedule

A capacity building favourite food theme activity was used to familiarise the participants with the top three ranking activity (Goodall, 2019). Top three activities were included as an interactive tool based on research conducted by Clark (2012). It was decided this activity would be modified from ranking nine items in Clark’s study to choosing three top items from a menu of nine laminated cards set out using a consistent format in rows of three (Picture 2). Focusing on a smaller number rather than nine items was judged to be helpful for students with auditory and visual processing difficulties, something that can accompany autism (Kallio et al., 2016).

Findings from the literature review as to what can be ‘supportive’ and ‘potential worries’ at school were used to determine which items to include in these activities. After conducting the pilot and first participant interview and thinking about the question “What is the child making of this?” it was decided to change the labels of the activities as these participants seemed reluctant to engage in the activity when framed in terms of worries (Westcott & Littleton, 2005). The “supportive aspects” label was changed to “items for your tool kit for school”. And “potential worries” was changed to, “If your Principal could give you superpowers what would you take away from school?”. Students also had the option of adding their own thoughts if the cards did not show things that in their experience acted as potential worries or supports at school.

 

Picture 2 Laminated cards for choice activity

Now we are going to move on and do a top three ranking activity. First, we will start off with these nine types of different food. The cards are… (go through the cards with the participant).

Can you please pick your top three favourite foods?

This first ranking activity is designed as a capacity building activity.

Food options provided:

Ice cream Chocolate Pizza
Spaghetti Bolognese Fish and Chips Sushi
Hamburger Indian curry Toast & Scrambled Eggs

 

If you could ask your principal to put three of the following cards in your tool kit for school which cards would you choose?

Having friends at school My teacher understands my needs When feeling stressed or anxious I have a safe place to go
During break and lunch time I have activities to do Work in class based around my interests Able to take breaks from class work when I need to
Having visual supports and schedules at school Low numbers of children in my class People understand me for who I am

 

The next activity is also a top three activity but this one involves superpowers.

If your school principal could give you superpowers, and you could take three of the following cards away while at school, which cards would you take away?

When stressed not having a quiet place to go The classroom being too busy and noisy Lunch time and other break times at school
Being bullied Not been given the space to socialise with other children at school Being in the playground
People having low expectations of my academic ability Being at school for full school days (9-3pm) Too many children in my class

 

In the interview, children were also asked to rate how they found being at school out of ten on a Likert scale. They had the option of providing their answer verbally, by pointing to their rating on an A4 printed sheet, or by moving around and standing on the equivalent rating number card on the floor. In addition, a laminated ‘break’ card was placed next to participants during the interview. They were told they could pick up the card up at any time if they wanted a break.

Piloting the interview

A pilot interview was conducted with a student ‘Siena’. Although she did not have characteristics of autism, she fitted the inclusion criteria in other respects; she was in the same age group as the adolescent participants and was able to verbally understand and respond to interview questions. Siena suggested it would be good for students to have something to do with their hands during the interview, she thought it would be useful to have a Rubik’s cube or other items to fiddle with. As a result of this feedback a variety of fidget toys were purchased and put into a small box to make available to participants during the interviews.

She also provided feedback on the interview schedule. She liked the “pick your top three” activity as these questions suggested possible answers, instead of it being expected participants come up with responses in their own words. In terms of the top three activities through the process of conducting the trial interview it was decided the wording of the questions for these activities should change. During this pilot interview it felt awkward presenting the top three activity questions in terms of worries and supports and the participant seemed reluctant to answer this question perhaps has the interviewer did not know the participant that well. This was especially true for the question regarding worries. As a result the interview questions were changed so that they were framed in less personal terms; instead of reference to “supports” the question was changed to being in terms of a “tool kit for school”, and “superpowers” instead of “worries”.

As a result of the feedback from the pilot interview a box of sensory toys was available to the participants during the interview. This provided the participants with something to do with their hands which took the need away for sustained eye contact and gave the interview participants something other than the interview questions to focus attention on.

Conducting the interview

The interviewer maintained an awareness of space during the interviews. It was not possible to control the location of the interviews as this was determined by the family or LSC. One interview was conducted in a café. Similar to the research conducted by Beteta (2009), the child seemed a bit distracted by the background noise and had to ask the interviewer to repeat a number of the interview questions a few times so that he could hear the questions being asked. The other six interviews were conducted in school meeting rooms. These rooms were good places for the interviews as the student and interviewer were the only people present which meant that focus was able to be sustained on the interview process and student confidentiality could be maintained.

In terms of interview techniques the interviewer tried to maintain a slow verbal pace when asking questions; this has been found to suit the processing speed of participants as it facilitates accurate interpretation (Sachse et al., 2013). Some participants needed the same questions repeated two or three times, so they were able to understand what was being asked. One of the students would sometimes be in the middle of thinking about his response and would lose his train of thought. He would then need the question repeated so he could refocus on what was being asked. For the multichoice top three activities the interviewer would offer to read out the nine items for each question. It was not assumed that all participants had the ability to read; several the students preferred having the items read out as perhaps they could not read them independently.

To build rapport other interview techniques included the use of humour, repeating back the participants viewpoint, and maintaining a friendly manner with participants was used. Remaining silent where appropriate to allow the participants more space to think aloud was another interview strategy used (Kallio et al., 2016). The interviewer writing notes during the interviews was also used as the note writing provided a focal point that did not involve making eye contact which may have helped some interviewees feel more comfortable.

With regards to the additional modalities for answering questions none of the students brought along a drawing of themselves at school or wanted to draw one during the interview. Drawing paper, pens and pencils were on the table available for the participants to use during the interview but none of the participants choose to use them. The “top three” item activities provided an additional means by which participants could communicate their answers and took the emphasis off just responding verbally (Rubin & Rubin, 2012). The cards also acted as a tool that was helpful for stimulating conversation (Clark, 2012). For the ‘How do you find being at school?’ question none of the students used the floor version of the one to ten Likert scale. In the café it was not appropriate to lay it out as there were other patrons there. It was also not appropriate to use the floor Likert scale in the interview rooms provided by the participating schools. These rooms were small and the floor space was not big enough to lay it out fully.

Conclusion

          By listening to children, the current study identified aspects of schooling that support the inclusion of adolescent children with autism, as well as some areas of everyday practice and experience that could be strengthened for them. This study was interested to find out from participants what ‘belonging’ at school meant to them.

This study used the UNCRC as a guide and viewed inclusion from a child’s rights perspective. Inclusion was viewed as the practical application of every child’s right to education (Article 28). Children with autism are underrepresented in research related to inclusion. Supporting this group to have their say was therefore a key goal of the study. UNCRC Article 28, the right to education, was viewed in conjunction with Article 12, children’s right to have their say on matters that affect them. In relation to Article 12, Lundy’s (2007) conceptualisation of this article in the form of the Model of Participation was referred to throughout the research process to consider this group’s needs and what steps might be taken to accommodate and support these students to express their views. For this group of participants, specific attention was given to sensory considerations, mental processing speed, and providing advanced warning of what to expect during the interview so that the interview process did not seem too daunting for the participants.

References

Ainscow, M. (2005). Developing inclusive education systems: What are the levers for change? Journal of Educational Change, 6(2), 109-124. doi:10.1007/s10833-005-1298-4

Alderson, P. (2018). How the rights of all school students and teachers are affected by special educational needs or disability (SEND) services: Teaching, psychology, policy. London Review of Education, 16(2), 175-190. Retrieved from https://doi.org/10.18546/LRE.16.2.01

Bagnoli, A. (2009). Beyond the standard interview: The use of graphic elicitation and arts-based methods. Qualitative Research, 9(5), 547-570.

Baron-Cohen, S. (2008). Autism and asperger syndrome: The facts. Retrieved from http://eds.b.ebscohost.com/eds/ebookviewer/ebook/bmxlYmtfXzQ2NzU0MV9fQU41?sid=d9d3b6e3-85a2-4414-9090-32756a3754c1@pdc-v-sessmgr01&vid=1&format=EB&rid=1

Beteta, L. (2009). A phenomenological study of the lived experiences of adolescent females with Asperger Syndrome. Retrieved from: https://scholarworks.waldenu.edu/cgi/viewcontent.cgi?article=1648&context=dissertations

Bourke, R., O’Neill, J., & Loveridge, J. (2018). Children’s conceptions of informal and everyday learning. Oxford Review of Education, 44, 1-16. doi:10.1080/03054985.2018.1450238

Brown, K., Peña, E., Broido, E., Stapleton, L., & Evans, N. (2019). Understanding disability frameworks in higher education research. Theory and Method in Higher Education Research, 5, 19-36. doi:10.1108/S2056-375220190000005003

Clark, J. (2012). Using diamond ranking as visual cues to engage young people in the research process. Qualitative Research Journal, 12(2), 222-237. doi:10.1108/14439881211248365

Connor, D., & Cavendish, W. (2020). ‘Sit in my seat’: Perspectives of students with learning disabilities about teacher effectiveness in high school inclusive classrooms. International Journal of Inclusive Education, 24(3), 288-309. doi:10.1080/13603116.2018.1459888

Cridland, E., Caputi, P., Jones, S., & Magee, C. (2014). Understanding high-functioning autism during adolescence: A personal construct theory approach. Journal of Intellectual and Developmental Disability, 39(1), 108-118. doi:10.3109/13668250.2013.870331

Cridland, E., Caputi, P., Jones, S., & Magee, C. (2015). Qualitative research with families living with autism spectrum disorder: Recommendations for conducting semistructured interviews. Journal of Intellectual and Developmental Disability, 40(1), 78-91. doi:10.3109/13668250.2014.964191

Ellis, J. (2017). Researching the social worlds of autistic children: An exploration of how an understanding of autistic children’s social worlds is best achieved. Children & Society, 31(1), 23-36. doi:10.1111/chso.12160

Fayette, R., & Bond, C. (2018). A systematic literature review of qualitative research methods for eliciting the views of young people with ASD about their educational experiences. European Journal of Special Needs Education, 33(3), 349-365. Retrieved from http://dx.doi.org/10.1080/08856257.2017.1314111

Fortin, J. (2009). Children’s rights and the developing law (Vol. 3). Cambridge, UK: Cambridge University Press.

Gill, P., Stewart, K., Treasure, E., & Chadwick, B. (2008). Methods of data collection in qualitative research: Interviews and focus groups. British Dental Journal, 204(6), 291-295. doi:10.1038/bdj.2008.192

Goodall, C. (2018). Inclusion is a feeling, not a place: A qualitative study exploring autistic young people’s conceptualisations of inclusion. International Journal of Inclusive Education, 1-26. doi:10.1080/13603116.2018.1523475

Goodall, C. (2019). Understanding the voices and educational experiences of Autistic young people: From research to practice. New York, NY: Routledge.

Goodall, C., & MacKenzie, A. (2019). What about my voice? Autistic young girls’ experiences of mainstream school. European Journal of Special Needs Education, 34(4), 499-513. doi:10.1080/08856257.2018.1553138

Honeybourne, V. (2015). Listening to pupils. Special Educational Needs, 74, 58-59.

Humphrey, N., & Symes, W. (2011). Peer interaction patterns among adolescents with Autistic Spectrum Disorders (ASDs) in mainstream school settings. Autism: The International Journal of Research and Practice, 15(4), 397-419. doi:10.1177/1362361310387804

Kallio, H., Pietilä, A. M., Johnson, M., & Kangasniemi, M. (2016). Systematic methodological review: Developing a framework for a qualitative semi‐structured interview guide. Journal of Advanced Nursing, 72(12), 2954-2965. doi:10.1111/jan.13031

Kearney, A. (2016). The right to education: What is happening for disabled students in New Zealand? Disability Studies Quarterly, 36(1). doi:10.18061/dsq.v36i1.4278

Kelly, B. (2005). ‘Chocolate … makes you autism’: Impairment, disability and childhood identities. Disability and Society, 20(3), 261-275. doi:10.1080/09687590500060687

Klees, S., & Thapliyal, N. (2007). The right to education: The work of Katarina Tomasevski. Comparative Education Review, 51(4), 497-510. doi:10.1086/520863

Lundy, L. (2007). ‘Voice’ is not enough: Conceptualising Article 12 of the United Nations Convention on the Rights of the Child. British Educational Research Journal, 33(6), 927-942. doi:10.1080/01411920701657033

MacArthur, J., Sharp, S., Kelly, B., & Gaffney, M. (2007). Disabled children negotiating school life: Agency, difference and teaching practice. International Journal of Children’s Rights, 15(1), 99-120. doi:10.1163/092755607X181720

Mauthner, M. (1997). Methodological aspects of collecting data from children: Lessons from three research projects. Children & Society, 11(1), 16-28.

Mitchell, D. (2015). Education that fits: Review of international trends in the education of students with special educational needs. Retrieved from https://www.education.vic.gov.au/Documents/about/department/psdlitreview_Educationthatfits.pdf

New Zealand Foreign Affairs and Trade. (2019). Universal periodic review. Retrieved from https://www.mfat.govt.nz/en/peace-rights-and-security/human-rights/universal-periodic-review-2019/#third

New Zealand Government. (2019). Korero Matauranga: Learning Support Action Plan 2019-2025. Retrieved from https://conversation.education.govt.nz/assets/DLSAP/Learning-Support-Action-Plan-2019-to-2025-English-V2.pdf

Office of the Children’s Commissioner. (2018). Education matters to me: Key insights. Retrieved from https://www.occ.org.nz/publications/reports/education-matters-to-me-key-insights/

Rubin, H. J., & Rubin, I. (2012). Qualitative Interviewing: The art of hearing data (3rd ed.). Thousand Oaks, CA: Sage.

Rutherford, G., & MacArthur, J. (2018). What’s wrong with ‘special’? Thinking differently in New Zealand teacher education about disabled children and their lives. In K. Runswick-Cole, T. Curran, & K. Liddiard (Eds.), The Palgrave handbook of disabled children’s childhood studies (pp. 365-388). London, England: Springer.

Sachse, M., Schlitt, S., Hainz, D., Ciaramidaro, A., Schirman, S., Walter, H., . . . Freitag, C. M. (2013). Executive and visuo-motor function in adolescents and adults with autism spectrum disorder. Journal of Autism and Developmental Disorders, 43(5), 1222-1235. doi:10.1007/s10803-012-1668-8

Sargeant, J. (2018). Towards voice-inclusive practice: Finding the sustainability of participation in realising the child’s rights in education. Children and Society, 32(4), 314-324. doi:10.1111/chso.12247

Scott-Barrett, J., Cebula, K., & Florian, L. (2019). Listening to young people with autism: Learning from researcher experiences. International Journal of Research & Method in Education, 42(2), 163-184. doi:10.1080/1743727X.2018.1462791

Sproston, K., Sedgewick, F., & Crane, L. (2017). Autistic girls and school exclusion: Perspectives of students and their parents. Autism & Developmental Language Impairments, 2, 1-14. doi:10.1177/2396941517706172

Sturmey, P., & Fitzer, A. (2007). Autism Spectrum Disorders: Applied Behavior Analysis, evidence, and Practice. Austin, TX: Pro-ed.

Watson, N., Shakespeare, T., Cunningham-Burley, S., Barnes, C., Corker, M., Davis, J., & Priestley, M. (2001). Life as a disabled child: A qualitative study of young people’s experiences and perspectives. Edinburgh: University of Edinburgh.

Westcott, H., & Littleton, K. (2005). Exploring meaning in interview with children. In D. Hogan & S. Greene (Eds.), Researching children’s experiences: Methods and approaches (pp. 141-157). doi:https://doi.org/10.4135/9781849209823

Winter, M., & Lawrence, C. (2011). Asperger Syndrome: What teachers need to know (2nd ed.). London: Jessica Kingsley.

Zilli, C., Parsons, S., & Kovshoff, H. (2019). Keys to engagement: A case study exploring the participation of autistic pupils in educational decision‐making at school. British Journal of Educational Psychology, 90(3), 770-789. doi:10.1111/bjep.12331

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