I am going to deviate from the technology and education topics that I have been drawing from in recent posts and focus on another area of particular interest to me for this post. Autism – autism and inclusion to be exact.
Autism is the behavioural manifestation of a polygenetic developmental neurobiological disorder, which primarily involves a dysfunction in the central nervous system (Minshew & Williams, 2007). The number of students in mainstream schools with autistic spectrum disorders ASDs has risen in recent years (Keen & Ward, 2004), however the placement of such pupils in mainstream schools does not automatically mean that these pupils receive an education suited to their particular needs (Humphrey, 2008).
The term autism was first used in 1943 by Leo Kanner to describe children he observed to have difficulty relating to others, a desire to be alone, poor communication and a need for sameness. Autism is now characterised by the triad of impairments (Wing, 1988), those diagnosed as having ASDs display behaviours reflective of difficulties in each of the areas of social communication, social imagination and social interaction, but there is significant difference in the way the triad is manifested in each individual (Connor, M., 1999). The continuum of ASDs highlights the differences in the level of severity of symptoms that may be experienced. Some children will require care and specialist interventions into adulthood whilst others, given appropriate interventions, can be enabled to live relatively independent lives.
Wide varieties of beliefs exist, about ASDs among mental health professionals, educationalists, parents and the general public. These widely differing views have led to much debate which, some would argue, has acted as a driving force behind progress and research into this area, which could lead to a better understanding of ASDs and the development of more effective interventions (Helps, Newsom-Davis & Callias, 1999).
The rising incidences of ASDs indicate a higher prevalence in recent years (Keen & Ward, 2004) and inclusion of children with ASDs in mainstream schools has risen in line with this (NAS, 2002, 2003). The distinctive difficulties in social and emotional understanding of pupils with ASDs (Emam, Mahmoud, M. & Farrell, Peter, 2009) makes the process of facilitating their learning and participation a complex and misunderstood area of education (Barnard, Prior & Potter, 2000; Batten, Corbett, Rosenblatt, Withers & Yuille, 2006; Davis, et al, 2004; Humphrey & Parkinson, 2006). This has led to many debates concerning what inclusion actually means for pupils with ASDs.
The Salamanca Statement, 1994 states that ‘those with SEN must have access to regular schools which should accommodate them within child centred pedagogy capable of meeting these needs’. The Education Act which came into effect in 1998 in Ireland provides for the education of every person including any person with SEN. This makes it necessary for schools to provide an education appropriate to the needs and abilities of the children in their care, ensuring through assessment that all needs are identified and provided for (EPSEN, 2004). Yet how is this possible when many teachers are acutely aware of their lack of training in this area and feel ill-equipped to meet the needs of students with ASDs. Many teachers report that, due to their lack of training, they find it difficult to change their teaching styles (Humphrey, 2008) to meet the needs of pupils with ASDs. Tensions arise between the pupils and the teachers which can lead to the pupil feeling excluded in an environment that should be inclusive (Connor, 2000; Osler & Osler, 2002).
In order for inclusion to take place schools must be informed by the principle of inclusion and provide a favourable setting for achieving equal opportunity for all, differences should be celebrated and individual needs should be accommodated (Salamanca Statement, 1994; Education Act, 1998, EPSEN, 2004). This is not true for many students with ASDs who report feeling socially isolated and anxious at school (Humphrey & Lewis, 2008). The school environment in itself is stressful given that it is at odds with the predictability and routine that pupils with ASDs rely upon, (Barnard, Prior and Potter, 2000; Keen and Ward, 2004; Connor, 2001). Most pupils with ASDs also experience sensory difficulties and can find noises, lights and touch, to mention a few, stressful and even painful. Taking this into account mainstream schools are not particularly ASD friendly environments and cannot feasibly accommodate all individual needs unfortunately.
Children with ASDs should, wherever possible, be educated in an inclusive environment and ought to be afforded the same opportunities for social inclusion as their peers (Education Act, 1998). Yet many pupils with ASDs experience bullying as a matter of course, particularly at secondary level (Chan, 2006; Smith, 2004; Humphrey, 2008). The relationships between pupils with ASDs and their peers can be both a barrier and an enabler to inclusion. The social isolation and bullying experienced by pupils with ASDs can be counteracted through support from peers (Humphrey, N., 2008) and social skills groups, ‘circles of friends’, in particular have proven successful in promoting positive peer relationships (Gus, 2000).
Pupils with ASDs should be afforded appropriate opportunities to gain meaningful access to the curriculum and should be supported in accessing the hidden curriculum to aid development of personal and social skills (Task Force on Autism Report, 2001). Yet current practices within mainstream schools have been found to contribute to alienation and social exclusion in students with ASDs (Connor, 2000; Osler & Osler, 2002).
Inclusion should ideally promote the same opportunity for education, rights and responsibilities for all within an open and transparent system. Parents, pupils and teachers should work together, reflect upon the varied natures of the children in the school, and address how best to meet their diverse needs (Task Force on Autism Report, 2001). Pupils with ASDs should be enabled to develop the necessary skills to participate in society in a meaningful way, both socially and economically, and lead, to the highest level of their ability, independent lives (EPSEN, 2004). Inclusion is an ongoing process (Humphrey, N., 2008) which must take account presence, participation, acceptance and achievement (Individuals with Disabilities Education Improvement Act, 2004) in order to be effective.
McGregor and Campbell (2001) made the observation that inclusion may not be in the best interests of each individual child and it is possible that teachers in the mainstream setting may not have the necessary skills or appropriate resources to meet the complex social, learning and behavioural needs of these pupils (Marks et al. 2003; Kasari, 2003). Many teachers are uncertain about their ability to teach pupils with ASDs within a mainstream classroom (Barnard, Broach et al. 2002). Despite the ever growing number of pupils with ASDs being included in the mainstream setting the manner in which their learning needs are addressed and their participation in everyday school life remains a very poorly understood area in education (Barnard et al. 2000; Davis and Florian, 2003).
For inclusion to take place teaching methods and the structure of the classroom must be adapted to best meet the needs of the child with autism (Barnard, Prior & Potter, 2000; Paneri, Zingale, Trubia, Finocchiaro, Zuccarello, Ferri and Elia, 2009 ). The placement of a child with autism in a mainstream classroom is viable only if the correct supports are put in place. Without appropriate strategies the child will struggle and unfair pressure will be placed on the teacher (Batten, 2005). Inclusion by location is of no benefit to the child or the teacher (Glashan, MacKay & Grieve, 2004) and could prove detrimental to the long term development of the child.
Students with ASDs have a right to specialised educational programs (Paneri, Zingale, Trubia, Finocchiaro, Zuccarello, Ferri and Elia, 2009) however delivering a specialist education in a non-specialist environment is challenging (Glashan, MacKay & Grieve, 2004) particularly if training is not provided. Specific techniques have been developed to aid pupils with ASDs access what it instinctively grasped by non ASD pupils (Mesibov & Howley, 2003). Studies have shown that when teachers receive training in the strategies recommended for working with children with ASDs they are less likely to experience burn-out and are more confident in working effectively with the children in their care (Emam & Farrell, 2009). Likewise Jennett, Harris and Mesibov, 2003 found that when teachers were trained in an ASD specific intervention they were more successful in working with children with ASDs and had lower levels of burnout than those teachers who were not trained.
Children with ASDs require explicit teaching of social skills in order to help them gain an understanding of the hidden curriculum within mainstream schools (Whitaker, P., 2007). Paneri, Zingale, Trubia, Finocchiaro, Zuccarello, Ferri and Elia, (2009) found that although support teachers were employed to support children with ASDs within the mainstream setting often these teachers were not ASD trained. They lacked knowledge of the correct assessment tools and intervention strategies used for these pupils and often focused on more academic targets to the detriment of adaptive skills. In a study by Glashan, McKay & Grieve (2004) classroom teachers reported that the support received from support teachers was inadequate due to a lack of training and knowledge. All teachers who took part in this study felt that if a systematic planned approach was put in place and training provided they would be better equipped to meet the needs of pupils with ASDs.
Special needs assistants (SNA) are often assigned to pupils with ASDs in both mainstream and special classroom settings. The majority of SNAs assigned to pupils with ASDs do not have any formal training in this area and teachers reported that they found it stressful attempting to guide another adult when they themselves felt inadequately prepared with regard to ASDs (Glashan, McKay & Grieve, 2004; Jordan, 2008). Studies have shown that teachers, due to feelings of inadequacy, often relinquish responsibility of the student to the SNA and as a result the level of interaction between teacher and child is reduced (Marks, Schrader & Levine, 1999) which is not in the best interests of the teacher-pupil relationship (Hamre & Pianta, 2001). Teachers who received training on special educational issues felt their relationships with SNAs benefited from the training (McGregor & Campbell, 2001).
Teachers are crucial to the successful inclusion of pupils with ASDs in mainstream settings and without the correct assistance and support teachers attitudes are unlikely to be positive. Following a review of pertinent literature it appears that in order for inclusion to be successful appropriate support and training must be provided as positive attitudes and commitment are likely to come after best practice in provision rather than precede it (McGregor & Campbell, 2001).
Many pupils with ASDs are being enrolled in mainstream schools but they face numerous barriers which prevent them from having a positive school experience (Humphrey & Lewis, 2008). The unpredictability of the mainstream school, with its large class sizes and open plan layout coupled with an over stimulating environment can make school a stressful environment for pupils with ASDs (McGregor & Campbell, 2001; Connor, 2000; Glashan, McKay & Grieve, 2004). Social barriers to inclusion in mainstream schools also exist in the form of the curriculum, which is not appropriate for all children as it was not designed for all children, (McKay, 2002) and the difficulties with social interaction experienced by pupils with ASDs.
Social interaction is a core area of deficit for pupils with ASDs (Bauminger & Kasari, 2003), specific interventions are required to help these pupils to develop an understanding of social interactions to enable them to interact more meaningfully with their peers (Bauminger, 2003). Body language, prosody and other facets of the hidden curriculum (Myles & Simpson, 2001) must be taught explicitly to these pupils. The unusual behaviours that are sometimes exhibited by pupils with ASDs may prevent them from forming positive relationships with their peers (Robertson, Chamberlain & Kasari, 2003) as they are sometimes perceived as ‘odd’ (Humphrey, 2008).
Teachers can react to ‘labels’ and this can cause them to treat pupils with ASDs in a manner which is distinctly different to the way in which they treat their peers. It is imperative that teachers recognise that the ‘label’ does not define the child and that each child with ASD is unique (Molloy & Vasil, 2002). The manner in which the teacher treats the pupil with ASD has a direct impact on the way in which the pupil’s peers will perceive him. It is necessary for schools to ensure that these pupils do not become defined by their diagnosis (Molloy & Vasil, 2002; Humphrey, 2001; Murray, 2006) and that through ‘circles of friends’ (Gus, 2000) and other interventions peers are educated and relationships nourished. The relationships between pupils with ASDs and their peers can be both a positive and negative influence to their successful inclusion in school (Humphrey, 2008) and schools should utilise these relationships to the benefit of all parties involved.
In a study by Robertson, Chamberlain & Kasari (2003) it was found that students with ASDs are perceived to experience the same level of social inclusion as their neurotypical peers suggesting that it is possible for pupils with ASDs to experience successful inclusion in mainstream classrooms. Contrary to these findings Carrington & Graham (2001) found that school can be a stressful and exclusionary place for pupils with ASDs, as they experience high levels of bullying and social isolation and regularly find themselves ostracised in what should be an inclusive environment.
Social difficulties in communication and interaction (Attwood, 2000; Baron-Cohen, 2000; Downs & Smith, 2004; Dunlop, McKay & Knott, 2003) can make pupils with ASDs even more susceptible to bullying than other pupils with SEN (Humphrey & Lewis, 2008). In a recent study by Humphrey & Lewis (2008) it was found that many pupils experience bullying on a regular basis and because of their difficulties with ‘mentalising’ they may not tell teachers or other adults as they may not be aware that the teacher does not know what is going on (Moore, 2007).
Reiter and Vitani (2007) found that pupils reacted in a variety of ways to rejection by their peers. Some pupils ignored their peers, others spoke with their parents about their experiences and others attempted to assert themselves. The experience of being bullied has been shown to have a detrimental effect on these pupils (Tantam, 2000) and can result in problems with mental health in later life (Schafer, 2004; Barnhill & Myles, 2001) as direct links between social isolation and depression in adolescents with ASDs have been established (Hedley & Young, 2006).
Inclusion in its purest form should enable pupils with ASDs to fully experience the day-to-day life of a mainstream school and to engage with typically developing peers on a daily basis. This would result in improving the quality of social interactions (McGregor & Campbell, 2001; Robertson, Chamberlain & Kasari, 2003) and peer relationships.
In my own experience I have witnessed some very successful placements for students with ASDs. I have worked closely with parents of children with ASDs and I have been in awe at the sheer strength and dedication they have to fighting for what their children are entitled to – and they do have to fight unfortunately.What are your views on ASDs and inclusion? Have you witnessed successful placements and true inclusion taking place? I would love to hear your experiences.
I will leave you with some very wise words from a parent of a child I used to teach – I was nervous about teaching this child as I didn’t feel experienced enough at the time. We were having a meeting and prior to the meeting beginning we were talking informally. I have great respect for this woman as I know just how hard she has to fight for what her son is entitled to (as so many SEN parents do)… I expressed my concern at my lack of experience and she told me that ‘when you’ve met one child with autism you’ve met one child with autism’ – that has and will always stay with me and despite all the training I now have that remains the most important piece of advice I have ever received.