Autism: Change schools -- not students -- for more inclusive education

Writing in the International Journal of Inclusive Education, Rozanna Lilley of Macquarie University draws on the experiences of eight New South Wales families whose children needed to change primary schools.

Central to Lilley's study were the experiences of the children's mothers, who intervened and worked tirelessly with educators, bureaucrats and therapists to secure the right education for their children -- even when it meant the distress and trauma of changing school. Many struggled to convince the authorities that their children were suffering in their current setting; some even found themselves paying for additional help during school hours.

In the end, six of the eight mothers moved their children to more 'segregated' classroom settings, leading Lilley to conclude that it was the schools that were not adapting to the needs of students -- not the other way round.

"The focus of the bureaucratic management of the differences presented by SDWA [students diagnosed with autism] is to concentrate on treating, containing and channelling the deficient child," she writes. What her research suggests, however, is that if a truly inclusive education is desired, the focus should be on the 'deficiencies of the classroom' rather than those of the student.

Based on the mothers' detailed accounts, Lilley turns the tables and suggests that many schools suffer from what she terms 'Autism Inclusion Disorder' (AID), the 'symptoms' of which mirror those of autism itself, including deficits in social communication and social interaction and restricted and repetitive behaviours. She outlines 10 defining features of 'AID', all of which were experienced by the mothers during their efforts to improve their children's education.

Lilley concludes: "Despite the policy shift towards inclusive education in NSW, the reality is that for many parents of SDWA inclusion continues to be fragile, contingent and disappointing."

"While some schools remain unable or unwilling to offer inclusive education, mothers, in the best interests of their children, will continue to make use of the segregated options that are available."

Lilley warns that the early primary-school 'drift' towards segregation she observed should be a source of major concern for policymakers, and she is clear on the way forward for truly inclusive education: "We should be focusing on how schools, not students, need to change." As such, this study is essential reading for educators, parents and anyone concerned with improving the education of children with disabilities.