A few weeks ago I wrote a short blog for the Sussex Research Hive blog on my research in progress. The post is reproduced below:
“Life is as hard as you want to make it” – how one mother summed up living with a child with high functioning autism.
My research is about the special needs system and why it is often described using language more reminiscent of warfare. Parents speak of a battle to get their children’s needs met and they fight for their children’s rights. But teachers also talk about the struggle to get funding and extra help in the classroom. Sometimes professionals from education and health services engage in combat in determining the best type of schooling to offer a child. Family members, especially brothers and sisters, can suffer collateral damage.
There are three aspects to my research:
Modelling the system. The special needs system is not easily defined. It includes aspects of health, education, social care and community provision, but it is malleable. The models explore how the different parts of the system interconnect.
Exploring influences on the system. What has shaped the system and caused it to develop as it has? How have legislation, service delivery, attitudes and expectations influenced the system and how do they contribute to the tensions in the system?
How do stakeholders experience the system? I have been listening to the accounts of parents of children with Asperger’s syndrome and high functioning autism, and to health and education practitioners.
Pulling it all together, I am looking at connections between the structure, influences and experiences of the system. Some aspects of struggle stem directly from the system, and it might be possible to make changes to ameliorate these. Others stem from societal attitudes and expectations – a much harder nut to crack, but by bringing them into the open, it offers opportunity for discussion and challenging perceptions.
Why am I doing this? I have a son on the autistic spectrum and I facilitate a parent support group. Parenting a child who is different can be hard, but does it have to be a battle?
Moving on, I am currently taking a break from my studies – a period of intermission. I am using the break partly as an opportunity to think about where I am with my research and findings before the last big push to get my thesis written. In going through an old notebook, I found a draft abstract for my thesis. It was written on the advice of my supervisor as a way of providing some direction to my work – and was written as though the research had been completed and written up. I found it interesting to compare with my current research in progress piece. Some of my ideas have remained constant and others have moved on:
Abstract dated 30/07/2010
Children with Asperger’s syndrome or high functioning autism have very specific support needs. Often the things which benefit them are helpful to normally developing young people. Such children are often schooled in mainstream environments and may not be diagnosed before entering school. Some are only diagnosed much later. Despite the policies on inclusive education, many parents describe a struggle in getting their child’s needs met.
This thesis examines why metaphors of fight and struggle are so common, even though professionals and parents have the same expressed desire to see the needs of these children met.
The question is approached from two distinct perspectives: the accounts of the individuals involved in care and support as to how they have learned about the spectrum, and an analysis of the autistic spectrum domain, identifying the different organisational and policy-based elements that underpin it. It is found that whereas a degree of partnership can be achieved between individuals, the policies and procedures at an organisational level can work against such partnerships, leading the same individuals into adversarial roles.
The analysis is underpinned by the work of Etienne Wenger and by work on adult learning.
There are some fairly obvious commonalities between the two pieces, but there are ideas which were highly relevant two years ago that have drifted into the sidelines while other ideas have become prominent. It will be interesting, in a few months time, to see what my abstract actually does say my thesis is about.
In the meantime, I will continue to enjoy this intermission and reflecting on where I am and where I’m going.