I began my career as a nurse in the area of intellectual disabilities, supporting adults and children with complex care needs in a residential setting. During that time, I also travelled to the States every summer to work in a summer camp for autistic teenagers. That is how I developed my passion for working with young people and the autistic community. I am now in the final funded year of my PhD. In October, I moved to studying part-time and took a position with AsIAm, Ireland’s national autism charity. I’m working full-time as an Education and Training Officer, delivering school-based programmes for teachers and students across the country.
My research examines student voice approaches to support the inclusion of learners with autism, so an active consultation phase was a key part of my research programme. This was challenging initially, as due to Covid restrictions I couldn’t begin my data collection until this time last year, but now I am writing the first draft of my findings chapter. Most of the research is done, it’s just down to putting it all together into one coherent thesis, and going back to the young people who took part in the study for a reflection.
I have to say, I was so impressed by the contributions of the students. I conducted nearly 50 adapted interviews with 19 secondary school students, because each student was unique and needed different accommodations. We used some of the principles of universal design for learning to inform our planning and methods.
“I was blown away by the topics that students opened up about, from things like the transition into secondary school and parts of the curriculum that they find difficult to aspects of the physical and sensory environment that can be barriers, like crowds and noises.”
Some students opened up about their identity as an autistic person, and what that meant to them. Others opened up about whether they would choose to disclose their diagnosis to friends or teachers. They also spoke about their relationships with teachers and their aspirations for after school. Some of the findings are in line with what I expected after reviewing the international literature. However, there are some insights and personal stories from students which will be unique to this study. As far as we can tell, this is the first study of its kind with this kind of robustness and sample size in Ireland.
I can give an example in relation to the physical environment. Many of the students I spoke to disliked the unsupervised, unstructured spaces at school, such as the canteen, the PE hall, the mainstream bathrooms and the hallways. One student spoke about how they really struggled with the transition period between classes because the hallways were so crowded. The sensory overload made it hard to get to class. A couple of students told me that they would sometimes wait until the end of the day to use the bathroom because they didn’t like being in that space where there was no adult supervision.
There are very easy ways to mitigate some of those pressures. The feedback coming from this study is all very reasonable. Students aren’t asking to knock down schools and rebuild them. It’s about looking at how we can make schools more inclusive through reasonable accommodations. One of the most common findings was the preference of students for a quiet, safe space at school that they could access when they were overwhelmed or needed a break. That was normally a sensory room. I conducted a lot of the interviews in those spaces, because it was where students felt comfortable.
On a basic level, I would hope that the students involved feel like their voices were heard. That is why I am looking forward to going back into schools to show students what I have come up with and get their views on it. If any student in the study felt like they got something off their chest, that’s great. Beyond that, I would like the voices of these students to be considered in policy and decision-making. I am planning to prepare a report that I can share with school management and the National Council for Special Education. This study could provide a valuable insight into how we support autistic students, as well as how we plan and what our schools should look like in order to be more inclusive environments.
Students are experiencing this themselves. If you take a rights-based perspective, according to the United Nations Convention on the Rights of the Child, it is absolutely their right to have a say in matters that affect them. If they are the ones directly experiencing inclusion or otherwise when going into a mainstream secondary school, then they are the ones whose voices matter. I think in the past we have focused on what teachers and parents have to say, and what’s often missing is the student’s voice. They are experts in their own lives and experience. Student voices should be reflected in policy, and it’s no different for autistic students. Although a lot of autistic students might communicate in different ways, it doesn’t mean that they can’t contribute. The onus is on us to listen to our students, whatever level of support they might need.
Without the scholarship, I wouldn’t have been able to complete any of this research. The scholarship agreed to pay my part-time fees this year, and helped me to seize an exciting opportunity. Thanks to that support, I am in a new role where the knowledge and insights gained through my research can have a national impact on students and on schools. Over the last few years, I simply wouldn’t have been able to work on this without their support. The volume of data collected and the amount of planning that went into the PhD meant I had to be full-time for those first years. The fact that I was able to pursue this research full-time for so long was down to the scholarship