25/07/2011 by lizit.

I am an insider in my research domain.

Reading an article recommended by a colleague on insider research (Hellawell, 2006) raises the possibility of there being different dimensions to insider research, and that my position might vary in different aspects of my research and in relation to different participants.

My research focuses on the Special Educational Needs (SEN) system and uses the lens of the experiences of parents and practitioners involved with children and young people with diagnoses of Aspergers or high functioning autism (HFA).

I am an insider in that I have a son with Aspergers and I have had involvement  with the SEN system in negotiating to get his needs met. I am also an insider as I have an ongoing relationship with other parents who have children on the autism spectrum, or who are going through the diagnostic process. I share a lot in common with other parents both in terms of understanding and navigating the SEN system and in terms of coping with the effect of having a child with Aspergers on daily living and dealing with the many and varied effects on family life and on me personally as a mother.

However, I am also interested in the perspectives of practitioners in the domain. In a sense, I am a practitioner as I facilitate a support group, but my experience in that role is very different from those practitioners who are responsible for diagnosing the condition, recommending interventions or providing support. At the same time, I have nearly 20 years experience of working in social care organisations, so I have experience of making decisions and recommendations that affect the lives of other. Although I may be seen as an ‘outsider’ by the practitioners I interview in professional terms, I do have some understanding of the pressures and influences they work under, and that does influence my approach.

There is also the question of the extent to which both practitioners and parents form a community of practice within the domain. Although this is not the focus of my research, it is clear that there is much shared knowledge and language between people coming from different places in the domain.

A useful article in enabling me to see that doing insider researcher is more complex than simply questions of making assumptions about common understanding or giving access that might not otherwise be so readily available.

Hellawell, D. 2006. Inside–Out: Analysis of the Insider–Outsider Concept as a Heuristic Device to Develop Reflexivity in Students Doing Qualitative Research. Teaching in Higher Education, 11, 483-494.

Posted in community of practice, Aspergers/HFA, methodology, reflections | Print | No Comments »

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 »

15/03/2011 by lizit.

The long-awaited government consultation document “Support and aspiration: A new approach to special educational needs and disability” was published last Tuesday. I have now had time to read it and and some of the early responses to it. My initial response last week was to question whether my research is still of any relevance given that the green paper addresses many of the areas I am interested in and that some of the discussion is underpinned by government commissioned research. I also had a sense that what I am doing might be anachronistic, even before it sees the light of day.

During the past few days, I have been able to reflect on the document and to begin to look at it more objectively. The fact that the green paper acknowledges problems in the existing system and suggests ways of addressing these does not mean that my work is irrelevant. In fact, in some ways it may be that some of the areas I am exploring are of even greater relevance as they are areas which receive scanty attention in the green paper.

The potential strength of the  recommendations is a move to a single assessment of SEN and disability culminating in an ‘Education, Health and Care Plan’ which will replace the Statement of SEN. The advantage of this is the potential reduction in the number of separate assessments a child or young person with complex SEN/disability might have to face and the shared responsibility and accountability of Health, Education and Social Care. However, it is unclear from the green paper which children and young people will have the opportunity of this single assessment and at what stage in their development. Clearly, it is applicable to those children with complex needs recognised very early in their life - and the green paper does lay emphasis on early identification of needs - but what of those children and young people who are apparently developing normally, but are a bit quirky and whose differences become evident at a later developmental stage. In particular, at present it is known that many children with Aspergers or HFA do not receive a diagnosis until they are into their primary education years - and some later still.

This leads to a further question. Many of these children with Aspergers or HFA (and others with neurological differences) have a record of behaviour difficulties and possibly exclusions prior to diagnosis. The green paper draws attention to the much higher risk of children and young people with SEN of both fixed term and permanent exclusion from school, but says nothing about the contested diagnoses which lead to some of these young people receiving a diagnosis of an autistic spectrum disorder and others being labelled as BESD. The section of the document discussing BESD is in my opinion the weakest in the whole document.

Although the green paper does focus on raising expectations of the potential achievement level of children and young people with SEN/disability, it is unclear to me how realistic some of the implicit, if not explicit, assumptions are. Yes, children with SEN/disability frequently leave school with lower qualifications than other young people and no doubt some could achieve more given the right support structure, but it is unlikely, I would have thought, that the achievement curve for school leavers with SEN/disability would ever mirror completely that for those with no SEN/disability. However, for high functioning young people, it is crucial that they are enabled to reach their potential rather than under-achieving as a result of missed education through exclusion or inappropriate or insufficient learning support.

Another area addressed in the green paper is that of the role of parents. It is acknowledged that parents frequently have insufficient information in the current system and recommendations are made to remedy this. It is also suggested parental choice will be increased, especially in relation to choice of school. Although there is no doubt parents have strong views about what is best for their children, it is disappointing that the voice of the child and their own aspirations has not been similarly strengthened, except when it comes to appeals where children will be able to enter their own appeals to the First Tier Tribunal. Parents are not necessarily always the best advocates for their children, though this is an area fraught with difficulty. Returning to choice of school, little is said about the continuing role of independent and non-maintained special schools…

There are very clear political themes underlying the green paper. Reducing expenditure is clear through reductions in bureaucracy and in multiple assessments. It is also there, so not so evident in other financial arrangements - who will be eligible for the new personal budgets and what restrictions will there be on their use. Free schools receive a mention - it is suggested that part of the increased school choice will include the establishment of new free schools and academies. The Big society is writ large with suggestions that the local community and voluntary sector might facilitate the new assessment system.

In terms of the recommendations in the green paper being enacted, some things are already being trialled such as short breaks; some things will begin to be trialled later this year, such as single assessments; but implementation of the whole will be over the next few years. Inevitably there will be considerable interest in the SEN community in both the discussion of the green paper, its implications and implementation and the effects of that implementation on the life chances of children and young people. My task is two-fold - to ensure that I complete my research and write a thesis which meets the academic criteria and to find ways of contributing to the debate and analysis of the change over the coming years.

Posted in SEN, Aspergers/HFA, Government policy, education | Print | No Comments »

27/01/2011 by lizit.

Not sure how long it would take to share this, but I think I actually am finding the plot! It seems to have moved a long way from virtual worlds and learning journey though.

My research examines why the metaphors of fight and struggle are so prevalent in the stories of those involved in supporting and caring for children and young people with diagnoses of Aspergers and HFA.

In approaching the question, at a personal level I bring a range of experiences from different parts of my life. In the 1970s and 80s, I was actively involved with people with disabilities as a community worker and social work team leader. During International Year of Disabled People, 1981, I was engaged in a number of projects including developing an access guide and information pack for people with disabilities in the local authority area where I was employed. My MSc research focused on those disability organisations that could be described as specialist local intermediary bodies, and examined the practices and philosophies of those made up only of other organisations, those with an individual membership of people with disabilities and those with both organisational and individual memberships. I recognised the importance of empowerment and in my social work role, I focused on ensuring my ‘clients’ had an opportunity to express their views as to what services would be helpful to them and how these might best be delivered, an innovatory approach at the time.

During the 1990s, I became a service user rather than a provider, as it became increasingly evident that my son’s challenging behaviour was due, at least in part, to his neuro-diversity. I learned about child mental health and special educational needs systems, and suffered the mortification of my son being suspended from school. I was able to use my professional skills to navigate the system and to access the support my son needed. I also became a service user in my own right, receiving support from the community mental health services. When the opportunity presented, I took the opportunity to share the knowledge I had gained with other parents by facilitating a support group.

My son is now an adult and I have been able to reflect on my experience and to view the services I was responsible for providing and the services I have received against the backcloth of changing models and understanding of disability. Now as a researcher, I am exploring the metaphor of fight and struggle as it occurs within the narratives of parents, professionals and others involved in the care and support of children and young people with diagnoses of Aspergers and HFA, and also looking at media content generated by parents and others and found in print and electronic form. These accounts are interpreted and understood through an understanding of the systems, discourses and models which influence and structure the experience of becoming a parent of a child on the autistic spectrum, a teacher of children on the spectrum, a health professional, or any other person involved in offering care and support to these children and young people.

Posted in values, Aspergers/HFA, research ideas | Print | No Comments »

22/12/2010 by lizit.

I’m working through my interview data at the moment and a phrase struck me. The participant was talking about parents of children on the autistic spectrum, and she said: “… or you are deemed to be a very vocal parent who’s only got what they’ve got because you’ve been so pushy about it and you’ve fought the legal system.”

That got me thinking about something that occurred to me quite forcibly a few months during a writing course at university. The thought was where was the child and the child’s voice in all this. Sometimes it can be presented as though parents are fighting the education system, the health system, or whatever because they want to. Yet surely the parents only find themselves in this fight scenario because of the needs of their child. To have a child who is unhappy and can’t cope with the ‘normal’ stuff most children are believed to thrive on is heartbreaking for most parents. Is it that surprising that parents find a voice and will “move heaven and earth” (as it said in the brochure for a school my son once attended) to get their child the help they need? The parents are not trying to achieve a victory for themselves, but to get their child’s needs met - or are they?

But what does the child actually want? How much of a voice do they have in the process of securing appropriate educational provision? I’m not going to attempt to answer that here, but what I do want to recognise is how important it is not to lose sight of the child or young person in everything else which may be going on.

Posted in parenting, struggle, Aspergers/HFA, ASD | Print | 2 Comments »

22/11/2010 by lizit.

Last Thursday I was sitting, talking to a woman at the drop-in centre I facilitate for parents with children with SENs. Her son, aged 14 and currently out of school, was playing with duplo on the floor nearby. He hasn’t been labelled as a school refuser, but hasn’t been in school this term, and previously he was refusing to co-operate with teachers or absconding from the school site. He has diagnoses of Aspergers and Dyslexia and currently has a reading age of 6 according to the psychological assessment done recently as part of his statutory assessment of SEN.

I first met this woman, I’ll call her Pam, a couple of months ago. She arrived at the drop-in very concerned about her son and adamant that he was not going to go to the school she understood the local authority were going to recommend for him. She knew he was being assessed for a statement, but she had very little understanding of the process, or what actions she could take to help him get an appropriate placement. Over the weeks, we have seen Pam become less angry and defensive and more prepared to listen to suggestions as to how she can build a case for placement at a school she thinks would be appropriate for her son. She has visited a number of schools and seen the range of options - and also found a school which her son would be happy to attend.

On Thursday, Pam arrived at the drop-in with the proposed statement. It could have been better written, but she had spoken to the SENCO at her son’s school and they had agreed it was probably OK. She had also spoken to the two schools, she did not want her son to attend, but she felt the local authority would be recommending. One had been very clear that it was not a good idea to admit a new pupil to an established group of students with special needs in the middle of Year 9. The other was clear that they could not offer the boy anything more than his current school had been able to. Both schools agreed to email the local authority saying they would not be an appropriate placement. She had also obtained a letter from her son’s psychiatrist to say that he needed to be in a specialist setting with staff who understood his conditions and his needs.

I suggested to Pam that she phone the local authority to check if they had received the emails. They said they had had no communication, but there was a panel meeting that afternoon when the boy’s placement would be discussed.

There was little else we could practically do, but Pam agreed to email me on Friday when she heard the results of the panel meeting. We also agreed that it would be appropriate for her to ask for a meeting to discuss school placement, if the local authority were still adamant about which school the boy should attend. It was while talking about the possible meeting, that Pam showed her concern. “I’m only a parent. They are all officials and I don’t know how to talk to them.” Pam had articulated the very reason why the drop-in had been set up. As another parent, and as somebody who has been through the whole SEN process, I understand how she feels and how much she needs support, and how much she feels wrong decisions are being made for her son. I want to step in and accompany her to meetings and tell the local authority how ridiculous they are being. At the same time, I want to enable and equip her to make her own case to the officials and realise that she can do it and that she is far more than “only a parent”, but a woman who can use newly developing skills to present her son’s needs.

In the end, I assisted her to write a letter - she is perfectly capable of writing letters, but needed the right turn of phrase to address the officials. At least she is using email now - when I asked her to email something to me a couple of weeks ago, she looked terrified. On Friday, Pam emailed me to say the local authority are still wanting to send her son to the school she regards as totally inappropriate. She had asked for a meeting and was waiting to hear when that might be.Next Thursday, I will see her again and we will talk about her preparation for the meeting and who she might take with her, either to help her to present her case or simply to take notes and support her. How much more than “only a parent” Pam is having to be as she learns knew skills and sets about supporting her son to get the education he needs and deserves.

Posted in SEN, parenting, struggle, Aspergers/HFA, education, learning | Print | No Comments »

03/06/2010 by lizit.

I’m reading Merrill and West’s book on using biographical methods and working through the first set of transcriptions. Perhaps inevitably, there is a lot of stuff going on in my head.

Perhaps one of the key learning points is seeing just how much my own perspective colours how I understand others. I was working on one of the transcriptions yesterday and can see very much the psychodynamics of the interaction and why I found it so difficult. At the same time, I can see how in other interactions, transference was working differently with me feeling far more positive about the exchange.

I am interested by the section on analysis - and the different ways in which Merrill and West approach the task. West’s use of the gestalt - a holistic approach - resonates with me, but I can also see how looking at the parts can be useful, as long as this does not become mechanistic when key ideas and insights can be lost within a category rather than the significance being recognised.

Perhaps because I am reading other people’s stories, I am also returning to my own. Although this stems as well from my attempts at diagramming the autistic spectrum domain, I found myself remembering the nightmare scenario of the only respite that could be offered to a troubled young man was a police cell - and having mental health workers in my house telling me I had no option but to ring the police as they had no appropriate provision (and they were from the tier 4 regional mental health services!). There is something totally wrong about a child acquiring a criminal record - a formal warning - for behaviour within the home stemming directly from a neurological condition.

But that points to the complexity of the domain. It may well be that it is possible to envision the people working as a community of practice, but the people come from different organisations and each organisation has its own procedures, systems and structures and each is involved in making available or rationing scare resources. A person might well see the relevance of making a particular provision, but that person also has a role within a system and…. Maybe it is easier and safer for those employed to care for and support people on the spectrum not to know too much about systems and organisations other than their own. Maybe too, this is when I have to look again at the work of Harry Daniels and Anne Edwards…

Merrill, B., & West, L. (2009). Using Biographical Methods in Social Research. London: Sage.
Edwards, A., Daniels, H., Gallagher, T., Leadbetter, J., & Warmington, P. (2009). Improving Inter-professional Collaborations: Multi-agency working for children’s wellbeing. London: Routledge.
Daniels, H., Edwards, A., Engeström, Y., Gallagher, T., & Ludvigsen, S. R. (2010). Activity Theory in Practice: Promoting learning across boundaries and agencies. London: Routledge.

Posted in biography, systems, community of practice, Aspergers/HFA, narratives, reflections | Print | 1 Comment »

23/03/2010 by lizit.

For a few weeks now I have been clear that my DPhil is about the learning journeys of those involved with supporting and caring for children and young people on the autistic spectrum.  Having read a lot of articles with varying degrees of relevance, it is becoming clear that this needs some refining. Most of the literature on parents with children on the spectrum seems to focus on parents of children with classic autism, rather than Aspergers or HFA, and much of it looks at support needs, especially around the time of diagnosis and several articles include parents of children with either autism or Downs syndrome. My focus is on the high functioning/Aspergers end of the spectrum and I need to reflect this in my title.

The other contentious area at the moment - no doubt there are others waiting to appear over the horizon - is the categorisation of participants. I have been dividing people into parents, professionals and non-professionals and recognising that some people may fall into more than one category. However, this may not be the most appropriate or helpful categorisation. The idea behind splitting off professionals was to identify those with a formally recognised qualification from those without. My reasoning lay in the privileging of  knowledge that is formally accredited over other knowledge, but it probably isn’t as straightforward as that.

For example, two teachers are both professionals with a formally accredited qualification in education. Both may be employed as SENCOs, but one may have additional specialist qualifications and several years experience of working with children with special needs and the other may have taken the role on because the school needed a SENCO and it was a way of getting a promotion, but have little experience or special knowledge of SENs or related administrative procedures.

This suggests that I may be looking at a generic/specialist split, but I am unsure that will meet my needs. I already know that social care staff, even senior, highly qualified care staff, are on lower pay scales than teaching staff. Am I therefore looking at two different things: professional as measured by possession of a formally recognised professional qualification and specialist as measured by knowledge and experience within the domain.

This also challenges my third category of parents. Some parents may also have professional qualifications and/or specialist knowledge in the domain.

This would suggest that the professional, non-professional and parent categorisation is only useful in terms of identifying the jobs people might be doing within the domain. As my focus is on learning journeys (how, what and why people know about the autistic spectrum), it may be that I need to slice across the roles and instead be looking at those with accredited qualifications, those with specialist knowledge but without accredited qualifications and those with neither accredited qualifications or specialist knowledge.

Probably need to think about this a bit more…

Posted in Aspergers/HFA, categories, specialist knowledge, qualifications, experience, learning | Print | 1 Comment »