29/04/2011 by lizit.

I facilitate a drop-in group for parents of children with SENs. Most of the parents who attend have children who have high functioning autism or Aspergers amongst their diagnoses.

Even though my research focuses on those who care for and support children and young people with diagnoses of Aspergers and HFA, I decided that it would be inappropriate to include this group in my research, apart from making personal requests to some specific individuals to interview them. My role in the group is to offer support and share from my own experiences and there was a clear conflict of interests between hearing confidential information in a support role and using such information in my research role. Further, if I had asked the consent of group users to use knowledge gained in the setting in my research, it may well at best influenced the operation of the group and at worst led to some parents deciding not to use the group because they could not rely on their circumstances being kept cinfidential.

However, from time to time I find myself in a conversation when I just wish I hadn’t made that decision. One such was a conversation this week. There were two parents with primary age sons, both with diagnoses of Aspergers and ADHD, and the discussion was about their concerns about aspects of their sons’ behaviours which were a cause for concern. As they spoke of some of their young sons’ aggressive acts, fascination with their bodies, and threats of violence to the point of murder, I was so reminded of my experiences with my son when he was much younger. Like them, I had been concerned by the cold and calculating way he had spoken of killing, and, like them, I was terrified that I might have a psychopathic killer as a son. I had forgotten those thoughts and feelings, but as I participated in this conversation, I remembered some of those dark times, and was so thankful that my son, now adult, is so different from what I feared he might be. Although nobody can guarantee how any child will develop, it brought some reassurance to these women that my son was now OK. But for me there was the dilemma of how do I include some of this content in my discussion of the struggles parents face in raising young people with ASDs.

Posted in boundaries, Aspergers/HFA, ethics | Print | 1 Comment »

19/02/2011 by lizit.

One of the questions I have been considering is the extent to which the practitioners within the autism domain can be considered a single community of practice, or whether there are a number of different communities of practice. My thinking has led me to consider inter-agency working and inter-disciplinary teams and has led me to various studies considering what happens at the boundary between organisations, professions, etc. It would seem that the boundary area can be seen as a place of opportunity, but also a place if disjunction and threat as it requires practitioners to see things from different perspectives to gain a common understanding. It has been suggested that one of the reasons why parents can feel side-lined from professional discussions is that the professionals are so busy sorting out their boundary issues, there is no room for the parental voice. In fact, the informed parent might even be seen as a threat to professional practitioners who are feeling vulnerable as they sort out their identities in an inter-disciplinary context.

The current issue of Sociology  includes an article discussing boundary objects (Fox, 2011). Although the focus of the article is on the adoption of new technologies and innovations, the concept of boundary objects could be of relevance in looking at the relationships that exist at the boundaries between communities of practice. Indeed, the context of the article is one of interdisciplinary working between different communities of practice. Fox suggests that boundary objects enable communication across boundaries and “empower members of different communities to transfer their own knowledge” (p 72).

In the AS domain, and SEN more generally, there are a range of artefacts which are shared between members of different communities of practice. These might include diagnostic reports, IEPs, Statements, etc. Boundary objects are said to allow different communities of practice to learn about each others perspectives and share meaning, but Fox also recognises that if they are inappropriately introduced, the may exacerbate difficulties rather than ameliorating them. He uses the example of Lister’s work in introducing asepsis, showing that originally Lister’s ideas were rejected by the medical establishment as by linking doctors with the introduction of germs to the patient, the doctor was perceived as part of the problem. Once the doctor was seen as part of the solution, with a shift of focus to the benefit of the patient, asepsis became acceptable, and it fitted the spirit of the time which was geared towards greater cleanliness and personal hygiene.

Putting this into an AS context, very often parents are anxious to receive a diagnosis for their child. The diagnostic report provided by the medical team is prized and is perceived by parents as a key to having their child’s needs addressed. However that same report may be seen in a different light by those responsible for educating the child. It may be that the education professionals do not share the medical perception of the child’s needs, or it may be that in order to meet the needs of one child might involve reducing support to another child (all too common a scenario in a world of scarce resources). Further, the formal diagnosis and recognition of a child’s needs might be the first step to the time and resource consuming process of a formal assessment of the child’s SEN and negotiations with the local authority to ensure appropriate provision is put in place. The parent might experience the school as obstructive rather than enabling in responding to the diagnostic report and addressing their child’s needs.

No doubt other artefacts could be similarly considered.

The question is, how can these artefacts, or border objects, be used to facilitate addressing the needs of children with SEN rather than as problematic.

Fox, N. J. (2011). Boundary objects, social meanings and the success of new technologies. Sociology, 45(1), 70-85.

Posted in struggle, boundaries, community of practice, empowerment, adoption of technology | Print | 1 Comment »

14/12/2010 by lizit.

I am currently reading Clandinin and Connelly’s book ‘Narrative Inquiry’. A section on the place of theory has caught my eye. I think I can see its relevance to me, but just testing it out.

The scenario Clandinin and Connelly use to introduce the topic, is a book review, where one of the authors worked with another reviewer on the task of writing a review. Clandinin suggested approaching the review from the perspective of stories of school life and linking these to themes from the book to examine how the ideas within the book might be relevant in practice. Her colleague’s approach was to establish an interpretive frame and to examine the book’s ideas in the light of this framework. This inevitably led to tension.

Clandinin and Connelly then discuss more generally the tension over the place of theory in narrative inquiry, using literature review as an example. Traditionally, doctoral theses contain a literature review chapter near the beginning of the work. This chapter is used “to structure the inquiry, identify gaps in the literature, outline principal theoretical lines of thought, and generate potential research possibilities.” In other words, the literature review provides a structure and framework for refining the research question, designing the study and analysing and interpreting the data. Clandinin and Connelly suggest that rather than privileging existing literature in this way, an alternative approach is to “weave the literature throughout the dissertation from beginning to end in an attempt to create a seamless link between the theory and the practice embodied in the enquiry.”

Reflecting on this, I am reminded of some of the discussions taking place under the #phdchat hashtag on Twitter. These discussions have drawn together a number of research students from different disciplines and institutions on different continents. While much of the discussion has been of a very practical nature, there is also discussion around methodologies, managing and analysing data, etc. One such question has been whether or not literature is data. My instinctive response to this is in the affirmative. Reading Clandinin and Connelly is making me think this through a bit - and making me look at my own approach.

Over the past two and a half years, I have read far more academic literature than at any other time in my life. What I have read has varied from some quite dense theoretical tomes to case studies and descriptive pieces. However, my research area is one that I have a familiarity with through my own experiences over several years involvement in the domain. In deciding my general research focus, I am as much, or more influenced, by what I know experientially as by what I can learn from literature, but the literature has raised questions and issues that I would not have been aware of from a purely experiential position.

Having started with a fairly general research focus, exploring the learning journeys of those responsible for supporting and caring for children and young people with a diagnosis of Aspergers or HFA, I am finding there is a theme emerging from interviews, which is also present in the literature, namely that of a metaphor of fight or struggle. From some perspectives, this struggle can be seen as part of the learning journey, and from others, learning in its various guises, can be seen as one of the roots of struggle. So rather than taking a particular framework or theoretical model from the literature and applying it to the context - and this would be a legitimate option - I am identifying an emerging issue and identifying a number of related themes from the narratives. These themes are leading me to return to the literature to examine them in more depth. Although what I am doing is emerging from the narrative, the theoretical concepts are providing a framework to attach those themes to and to explore them further, thus weaving together experience and theory.

Posted in theory, boundaries, narratives, concepts | Print | No Comments »

02/08/2010 by lizit.

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.

Posted in struggle, boundaries, community of practice, ASD | Print | No Comments »