“UNIQUE Is the world so round? An investigation into Aspergers” by Edward Learman. 10/05/2011
I have been interested in developing a documentary examining the research into the Autistic Spectrum and specifically the case studies of individuals diagnosed with Asperger’s Syndrome. I would like to explore both the clinical research and cultural attitudes represented in the media while attempting to capture how those in their personal lives overcome the difficulties they face with communication and social rules. This proposal has been inspired by the growth in digital filmmaking and in response to the biographical and social issue documentaries Tarnation (Jonathan Caouette, 2003), Grey Gardens (Albert and David Maysles, 1975), Crumb (Terry Twigoff, 1994) and the BBC television series The Autistic Me (Mark Soldinger and Jes Wilkins, 2009).
I have grown up with a brother who was diagnosed with AS from an early age and for who I am often concerned for as I don’t believe there is appropriate services or support available which would allow him to work and live independently. I do not intend to make my brother the primary focus of the narrative as I would like to allow other case studies of families and individuals to give their insights. I feel that the aim of the film would be to investigate the adult development of individuals with AS, since they are known to be intelligent, communicative and capable of leading independent lives. It is here that there is some ambiguity in the research regarding how Autism is identified using the modern diagnostic framework and the extent to which AS can be determined using these methods. One of the aims would be to investigate how the progress of research has developed and what circumstances and factors have contributed towards the study of Autism. I have been in contact with several Professors and departments in the field who would be willing to contribute to the film project and would provide their professional insights. Dougal Hare, Senior Lecturer in Clinical Psychology at Manchester University. Professor Valerie Benson from the University of Southampton’s Psychology Department. Dr. Tony Brown of the Diagnostic Research Centre in Southampton. I hope to organise the research with contribution from charities such as The National Autistic Society, The Hampshire Autistic Society and online sources such as Research Autism Net.
There is I believe, despite the abundance of material available through charities such as the NAS and online sources, limited opportunities and information available to families and individuals with AS wishing to access services and find appropriate support for their needs. I have come across several examples of where a diagnosis was given to relative but due to the lack of knowledge or support this had a detrimental effect on the family relationships. It seems as though there has been, until fairly recently, a lack of strategies for families on how to understand and adapt their behaviour to accommodate this event. I feel that because of these circumstances, both for my family and in my personal life, that there has and remains an absence that has not yet been identified and an inability to find a resolution to a clearer perspective. As a result of this, I think my brother’s life with his condition, alongside our relationship and responsibility to him, remains a question mark to us all. I often feel, though it is naturally a difficult subject even for professional practitioners whose responsibility it might to give an opinion, that for myself and for others who I have contacted this remains a closed discussion.
As many generally do, I see my brother’s condition as undetectable and it is only after scrutinizing his behaviour over a period of time that the condition becomes apparent. Until recently, I have described my brother’s condition as “mild Autism", a term I am aware that is incorrect but have felt difficulty in finding a clearer substitute. I have found the majority of people are unable to identify what the condition is or how to recognize it except to reference fictional portrayals and caricatures taken from television or other sources. I’ve come to realize that this is not how I would describe my brother and nor is it likely that his friends and relatives would subscribe to this since James has never allowed it to prevent him from pursing his interests or private life. The following quote is from a young woman with AS who spoke in an interview for an online film found on the NHS Choices webpage: “Autism is a neurological condition, which just means that the brain is physically different from what is considered to be neurologically typical, which is like a benchmark that scientists have decided upon as being what they consider to be normal. It's a neurological condition that affects three main areas, communication, understanding other people and social skills. I have problems with reading people's body language and also making friends and getting on with people in general. What worries me the most is being alone, not having a support network and not having a partner.” (Robyn Steward)
My brother James is 27 and seems capable of performing many of the tasks and activities that the most of us have learnt over our lives. Of his own endeavour, despite the personal and financial difficulties he faces, James has managed to be accepted among a social group of friends and to pursue his own interests in fantasy role-play, videogames and relationships outside of work. Alongside his high functioning social abilities, James shows a strong awareness of his status and to navigate his environment, and has to date worked in full time employment at a local cinema multiplex. Here James fulfils numerous duties such as Customer Representative and box office cashier and has done so for over two years despite his frustration with the role and organisation. I feel that in this regard, and in a scenario which maybe both paradoxical and debatable, my brother has of his own accord learnt to develop social skills in order to succeed in this capacity. However James still struggles to form relationships and understand emotions and facial expressions beyond his friends and work environment. This is one area I would like to highlight, where upon my brother can successfully make this transition to an environment where there is a limited or fixed structure of social interaction and behaviour, but a lack of opportunity in terms on social mobility and means to progress further. I expect that many of his colleagues and students who work there on a part time basis, some of whom are only in their teenage years, will learn to develop new skills and outgrow their adolescence while my brother will struggle to make this step in his adult life. I want to investigate the areas of work and employment opportunities for those with AS and what measures can be taken to allow those individuals to develop in a positive and supportive environment.
My brother remains dependant on our parents for guidance and support while receiving disability benefits. Before starting employment he had attended several uncomfortable meetings with bewildered career advisors and support workers through the university and jobcentre in an attempt to find suitable employment after Graduating in 2007. During this period we had became aware of the problems that existed with the assessment methods and criteria used by advisors to determine the amount of support required for someone with AS. In retrospect, and as Dr Tony Brown of the Diagnostic Research Centre has commented, the assessment methods and guidelines for those with AS used to determine an individual’s abilities does not appear to anticipate the unpredictable nature of the condition itself. This can be more clearly observed in examples of AS and Autism where individuals have shown remarkable skills and intelligence with numeracy or practical abilities but had difficulty with communication and emotional intelligence. The following is quote taken from the NHS Choices website concerning diagnosis of AS in adults “The autistic spectrum (the range of symptoms people with autism have) is very broad and two people with the condition may have very different symptoms. No one will have all the traits in the triad of impairments, but most people with autism have the following difficulties.” The main areas of difficulty for people diagnosed with Autism and AS are listed on the NAS webpage and are described using the term “Triad of Impairments” which is defined as follows: “Social Communication (recognising verbal and non-verbal language or gestures). Social interaction (problems understanding emotions). Social imagination (problems predicting or imagining other people’s intentions or behaviour).”
As with many individuals diagnosed with AS my brother shows an obsessive nature with specific routines. This being most noticeable in his fantasy role-playing activities which involves complex narratives to be played and improvised as a group in a series of episodic adventures. Perhaps this may not entirely distinguish James entirely from any ardent football fan or Television enthusiast who passionately devotes time to memorising and recreating details that many people would think trivial, but I believe it is in the strength of his concentration that is pertinent. This is another area I would like to investigate, where a community or society through its’ cultural practices facilitates and enables an individual to pursue their routine or obsession within a socially acceptable form of engagement. In this case, how does one properly determine how a person with AS is to be distinguished from a person who is capable of disengaging or overriding their own obsessive impulses? And what are these patterns of behaviour or routine in contrast to obsessions which become morbid and provoke withdrawal from reality?
Here I present an extract sourced from the Research Autism Database that gives an outline of these characteristics but provides little insight into what the social or practical implications might be:
“There are various theories as to why people with autistic spectrum disorders have impaired social skills. Some people think poor social skills may be caused by:
- a failure of affective processing
- a failure to develop a “theory of mind”, which prevents the individual from understanding what other people are thinking or feeling
- weakness or absence of the social gaze response
- memory dysfunction, such as deficits in memory for faces and common social scenes, which prevent the individual from remembering other people or events
- other problems, such as sensory distractions, which prevent an individual from concentrating on social issues” (http://www.researchautism.net)
An aspect of the documentary that must be addressed is the social context of the subject and the influence of the individual investigating the subject. I am aware that in making a documentary often a paradox comes into play where there is a relationship or a personal connection between the filmmaker and the subject. Here I’ve relied upon a quote from the psychologist Carl Jung to help illustrate this point: “Subjectivation (in technical terms, transference and countertransference) creates isolation from the environment, a social limitation which neither party wishes for but which invariably sets in when understanding predominates and is no longer balanced by knowledge.”(Jung, 1954) In this regard, biography and social context become closely intertwined and is therefore the responsibility of the filmmaker to respect their own arbitrariness. I hope to acknowledge this debate during the development stages in an attempt to underline the biographic history and material of the subject being investigated. It will be my aim to avoid biographic content in the narrative and to instead focus upon the key issues related to the individuals being represented within the film, their circumstances and how this relates to wider critical discussions. In terms of ethics and representation this is an issue I have considered but feel comfortable reflecting on and discussing with others.