One of my ongoing interests, which I referred to at the end of my last blog, is the sense of struggle which seems to be present in so many accounts of parents in relation to getting the needs of their children with autism met.
At the moment, one of the things I am working on is mapping what I refer to as the autistic spectrum domain. By this I am thinking of the different systems which together provide support and care to children on the spectrum or which otherwise impinge on their lives. This includes the diagnostic system (mainly health focused), the education system (which actually seems to be made up of a series of sub-systems with a divide between the school, where children learn, and the administrative systems, which determine resources and which decide on the appropriate school and whether or not to assess the child’s SEN), the social care system (which many families will have no contact with but which others may receive respite care or other services from and which may become involved if a child is placed in a residential school). These systems exist within a number of other systems or constraints which are less involved directly with the child and their family – the political/policy making system which determines the law and how it is interpreted, the legal system which both ensures the law is adhered to but also adjusts the law through case decisions, the financial systems which determine how much money is made available to local authorities to provide for the needs of people with disabilities – and the other side of the financial system which involves the benefits available to children and families and the affect of having a child with a disability on the earning capacity of parents and the costs incurred in raising the child.
I have been struck by references to the number of professionals involved in the life of a child with SEN. Chrissie Rogers and Katie Truss both list the professionals involved with their own children at given points in time and their accounts resonate with my experience. Reading a chapter written by Anne Edwards and Ioanna Kinti is causing me to reflect on whether one of the reasons for the struggle metaphor being used so often relates to the numbers of professionals involved.
Edwards and Kinti focus on boundary issues between professionals. They discuss the opportunities and struggles inherent in boundary places: “when boundaries are pushed out to include more people within them, threats to exclusive expertise, meaning-making and identity ensue.” There is a clear indication that parents are very much at the periphery when professionals are readjusting their own boundaries and coming to understand the professional practices of other disciplines. It was only as “practitioners from different backgrounds were able to recognise how much they shared professional values, they were able to work together on the common task ….”
A key question for me continues to be that of how is the expertise of the parent acknowledged and how does the parent become recognised as a practitioner in a community of practice – and indeed the issue of whether there is actually a community of practice or a collection of tribes warring for supremacy!
Edwards, A., & Kinti, I. (2010). Working relationally at organisational boundaries. In H. Daniels, A. Edwards, Y. Engeström, T. Gallagher & S. R. Ludvigsen (Eds.), Activity Theory in Practice: Promoting learning across boundaries and agencies (pp. 126-139). London and New York: Routledge.
Rogers, C. (2007). Parenting and Inclusive Education: Discovering Difference, Experiencing Difficulty. Basingstoke: Palgrave.
Truss, C. (2008). Peter’s story: reconceptualising the UK SEN system. European Journal of Special Needs Education, 23(4), 365 – 377.