Mainstream is not for all: the educational experiences of autistic young people

Abstract

This article highlights two current issues facing autistic young people in their pursuit of suitable education. First, mainstream education is advocated for all, from a rights-based perspective on inclusion, yet, as 12 autistic young people from Northern Ireland demonstrate, being academically able does not mean they are mainstream able. Second, autistic young people, who are largely missing from the debate on educational improvement, and in particular the inclusion debate, ought to be central to this discussion and have much to add. The social model of disability is considered relevant to autism. For the young people referred to in this article, inclusion is a feeling (a sense of belonging) not a place (mainstream or otherwise).

Keywords:

• Inclusion
• exclusion
• voice
• autism
• educational improvement
• young people

Introduction

Greater importance is placed on the views of children within one recent legislative development in Northern Ireland. The Special Educational Needs and Disability (SEND) Act (2016) (Northern Ireland) places the child at the centre of the SEN assessment process, with the Education Authority for Northern Ireland required to seek and apply due regard for the child’s views on decisions that impact on them. Yet in reality children and young people are not central to policy and legislative development, nor do they have a ‘choice’ on where to be educated. A mainstream school may not be suitable to meet their needs, as demonstrated by the young people in this article, but neither is a special school necessarily structured to meet their academic needs. There currently exists a postcode lottery for autism units within mainstream schools, with no autism-specific schools available to support autistic young people who are academically able but not mainstream ready.

The following lived experiences of 12 autistic young people (10 boys and two girls aged 11–17 years) demonstrate that mainstream for all, as advocated by the inclusion agenda, and in particular the rights perspective – championed by Article 24 of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) (United Nations 2006) – does not mean inclusion for all.

Mainstream education experiences of autistic young people

The comments made by young people in this article are drawn from my doctoral research (Goodall 2018), in which many and varied experiences were recounted. They mainly spoke of the challenges of mainstream school and the negative impact these had on their well-being and enjoyment of education. Dan (aged 11) offered the following insight:

School was always awful. I went through a bit of severe depression. I kept on saying, every time bad things happened, that I wished I was dead. I have to go to school [sad expression] … I was always dreading it.

Most felt excluded; some by peers and others by teachers. They discussed the stress, anxiety, dread and despair they felt before, during and after school. The unpredictability and overwhelming impact of the sensory and social environment – the ‘chaos of the corridor’ (Humphrey and Lewis 2008, 38) – and the teachers (for some) underpin these negative feelings. Sarah-Jane (aged 17) explains:

Asperger’s made it very difficult for me to cope with life in a large secondary school; there was too much noise and too many people to deal with. It was awful moving to the next class. Everyone was coming out and it was just swarmed with people pushing, running, shoving. I felt closed in and like I couldn’t breathe. It was difficult being in there all day.

Anxiety can stem from an autistic person’s need for predictability and routine. They often need to feel that they have control within their environment. Some noted that school was a place of control, with Timmy equating mainstream to jail. Most young people spoke of how they failed at mainstream school, and were of the opinion that mainstream school had failed them. In the main, they felt unsupported and misunderstood by teachers in mainstream schools, and some spoke of being unnoticed or being unwanted.

Young people also discussed loneliness, isolation, being bullied and experiences of anxiety in mainstream schools; all of which are congruent with the literature (see Hebron and Humphrey 2014). Despite experiencing difficulties with social interaction, the young people, in the main, expressed a desire for friendship and wanted to be with, and included by, peers.

Participants experienced isolation by peers, but were also isolated physically and academically by some of the teaching practices and approaches used for curriculum delivery, such as being educated in isolation and being kept inside during break time to complete missed homework – thus being further isolated at times when opportunities for social inclusion could be experienced. These practices exacerbated loneliness and feelings of being an outsider looking in – as documented by Sarah Jane who was regularly left alone and embarrassed when asked to find a partner in class. A lack of flexibility in teacher pedagogy was expressed by young people as a worry about school – a barrier to accessing the curriculum and to experiencing enjoyment of education. For Sarah Jane, being treated the same as her peers through the use of auditory mental mathematics as a means of assessment proved exclusionary as she had auditory processing difficulties. Participants noted that teachers lacked time and training to be able to give the required support to them. Training is often reported as important for successful inclusion (for example, Hayes et al. 2013). That said, the importance of training alone – as the ‘silver bullet’ – for improving education for autistic young people needs to be paired with a mindset of understanding that young people who share the label ‘autism’, are not a homogeneous group. Ro states:

It [teacher training] makes some of the difference but it depends how it is used. It is a matter of taking the training and using it seriously and understanding that the child is their own person.

The young people offered many suggestions for educational improvement, including: teachers being understanding of autism, the students’ individual needs and the impact of their practices; and teachers wanting to teach autistic learners, taking an interest in them, recognising them as a person, accepting them for who they are and adopting a flexible pedagogical approach to meet their needs. They also wanted smaller class sizes in schools with small overall populations but with high levels of support and safe spaces to use to de-stress.

Inclusion

Inclusion is not happening in mainstream schools for those young people in my study due to an absence of several factors, including: support and understanding from teachers and, for some, their peers; feeling secure to be themselves by being valued as an individual; and feeling that they belong, as opposed to being the unnoticed outsider. The attitudes teachers hold signal much more than the content of the lesson taking place – they impact on the extent to which the micro level of the classroom and the macro level of the school can be experienced as inclusive.

No single definition of inclusion emerged from the young people in my research. There were, however, recurring responses that centred on the feelings and principles associated with inclusion, such as happiness, being valued, fairness, equity, belonging and being recognised and respected as a person. It is apparent that these young people do not equate the term inclusion with mainstream school – both of which are often used synonymously within the inclusion literature. Inclusion, for these young people, is not dependent on being in a mainstream school and can be achieved in any type of school – a position not evident from the current inclusion discourse.

The young people were unanimous: none thought that placing more autistic young people in mainstream schools was a good idea, with Robert (aged 16) suggesting that inclusion for all in one school (mainstream) is not possible. He used a cooking analogy – not all ingredients can go together in one pot, only certain ones work together. In his opinion, a lack of support for children with disabilities is one reason for this mismatch. The young people were of the view that mainstream inclusion is not appropriate for all autistic young people as the mainstream is currently organised, thus opposing the concept of universal inclusion and the right to inclusive education advocated by Article 24 of the UNCRPD. Nevertheless, they did align to the premise of moderate inclusion: mainstream schools can work for some autistic young people when the necessary support is in place. Perhaps the provisions for educational choice – mainstream or special when appropriate – within draft Article 17(3)(c) of the UNCRPD would have been more aligned to these young people’s perspectives. Choice was advocated by four young people in my study.

Conclusion – time to get realistic

This article provides insights into the daily lives of autistic young people for whom mainstream inclusion is not at all appropriate to meet their needs. Inclusion in mainstream schools may outwardly appear ‘for the best’, but fail to be the best for many. Is it not better for these children to feel included in a specialist provision, an Alternative Education Provision or Autistic Spectrum Disorder specific school with similar children, as opposed to being effectively excluded through mainstream inclusion? Should mainstream inclusion be pursued at all costs, with autistic children falling through the cracks (as highlighted over a decade ago by the House of Commons Select Committee on Education and Skills 2006), or is it time to be realistic and concede that, although suitable for many, mainstream education as it is currently constructed has too many uncontrollable factors (such as social, environmental and pedagogical challenges), which impact on how autistic young people access, experience and succeed in education. Support too readily emanates from the medical model of disability.

The young people within my study demonstrated the relevance of the social model to their lived experiences and the importance of hearing their voice – recognising them as beings with capacity and ‘much to share’, and not as lacking. They have shown that their educational challenges are compounded by environmental and attitudinal barriers which the schools have failed to remove. These young people showed that they are experts in their own lives, of their autism, and should be given the space to disseminate their experiences to enable more autism self-advocacy, as Woods (2017) highlights. They must be central to the educational change and improvement to make school more suitable and inclusive.

As a teacher, it is not acceptable to continue the pursuit of full inclusion without considering the impact on those children who might become, arguably, educational collateral damage. They matter too. We should be mindful that schools are to serve children, not adults (as expressed over a decade ago by Warnock 2005). As such, the lives and experiences of these children – the reality of ‘inclusion’ – should be our guide to improving education, not ideology.

In short, inclusion ideology is not all it is cracked up to be, and, autistic young people themselves ought to be at the centre of any changes and of their educational choices.

Acknowledgements

The author would like to thank all of the young people in this article, and supervisors Prof. Laura Lundy and Dr Alison MacKenzie.

Disclosure statement

No potential conflict of interest was reported by the authors.