“This is the end, beautiful” etc……(Jim Morrison)

Just can’t be bothered any more. Preaching to the choir is one thing but preaching to a choir who are not interested in anything other than confirming their own prejudices and have a deep aversion to learning anything and just love to assure themselves how great they are and better than everyone else is another altogether. (Who then call the preacher a privileged shitlord behind his back.)

Thanks to the several people who read this shit.

Advertisements

“So you’ve been to school for a year or two and you know you’ve seen it all” (Jello Biafra)

logo

 

To remind readers, the first section of this blog is usually given over to academic work as submitted by me to the University of Salford’s Professional Doctoral Programme. This article is no exception and it is the submission for the “Leader as Researcher” module. I have subsequently decided to alter my research project but despite this I would value your comments. 

Just thirty six years after the autistic condition was first reported in academic literature, Wing and Gould published their pivotal study of autistic children in London (1979). Still profoundly influential on research and practice, it identified the “Triad of Impairments”. For the record, they are (in no deliberate order): impairments of social interaction, language impairment and repetitive or stereotyped activities. Now it is only in slight jest that the Triad of Impairments are often identified as health, social care and education.

This article critically analyses my proposed doctoral research in the context of a burgeoning private practice in practice, training and consultancy (see Appendix A), examines the position and role of current research leadership in the field and provides a concluding main section which will draw different perspectives together and in the process identify the most prominent gap in research and with it explore central issues of power (including my own) and a direct challenge to established practice.

Structurally it will commence with a description of the proposed project and an examination of some of the requirements to make the guiding vision worthy of doctoral consideration, how the research could be translated into practice and some ideas as to how the concept is to reach its intended communities. There will be an explanation of the chosen philosophical, ontological and epistemological approaches (drawing on Wittgenstein and the autoethnographic tradition) and their appropriateness with regard to confronting the balance of power in this particular field of research and practice (the ‘expert blind spot’); its use of ‘thick text’ and ultimately bringing the voices of autism from the margins to the centre. As it is an autoethnographic study, it is helpful to examine issues of power and reflexivity ‘in tandem’ due to the personal nature of the chosen approach and the two concepts. There will be a discussion on issues of ethics and translocational positionality with an added context of vulnerability and emotion in a deeply personal method and subject.

The analysis is best introduced by placing the project, albeit briefly, in a professional/ autobiographical context.

Prominent elements of my biography and the way in which it fits into my intended research project can be found in Shaping Autism Research (2016), summarizing as it does salient aspects of my personal history, particularly in childhood and youth; its link to a professional context lies not in my established position and source of income but the burgeoning “Bananas In The Pianos” locum, training and consultancy business which commenced trading in February of this year (see Appendix A). Both of the projects (the research and the business) are being undertaken partially in recognition of the dearth of academic work in the field of autism advocacy and thence an attempt to address that gap in the body of knowledge (especially in the ‘lived experience’ of the condition) and partially in order to provide credibility and vigour in building the business. In this sense, to adapt a popular idiom, one academic hand will wash the professional other and vice versa.

 

The proposal is as follows:

“An investigation of the therapeutic effect of advocacy for vulnerable users of health, social care and education service users, using the lived experience of adult autistic people through the medium of an auto-ethnographic method of enquiry.”

To describe the proposed project: the study aims to develop an original method of qualitative analysis coherent with its interpretivist principles. The objective is to use these methods to help establish a new paradigm in the emerging field of autism advocacy. If one intends to introduce new models of practice one has to employ new ways of building theory. The limitations of existing methodologies are first discussed to justify the need for a novel approach. To illustrate this approach, primary evidence is presented using the new methodology and the theory is built concurrently (or contemporaneously) from interviews, reflective accounts (including personal) and data from the literature, limited as it is.

It is intended that the first main body of the work (which will follow its own introduction and an exhaustive definition of terms) will be a critical examination of research articles on the subject of autism advocacy followed by semi-structured interviews of individuals who have been a subject of this type of service. There will then be a group interview of as many of the interview participants as can be practically convened, so as to allow the participants to develop their contributions made in their individual interviews, using their fellow participants to cross fertilise their ideas. All of the sets of “material”, or types of data, will be sampled purposively, a method of non-probability sampling wherein the researcher makes choices of their sample based on their judgement; it is also known as “judgemental” sampling.  This will be in the “critical case” variant of the method:

“Critical case sampling is a type of purposive sampling technique that is particularly useful in exploratory qualitative research, research with limited resources, as well as research where a single case (or small number of cases) can be decisive in explaining the phenomenon of interest.”

Lund Research 2012.

Without making prior assumptions of the results of the three processes, it is intended that an evidence-cased ‘service user’-centred theory of autism advocacy will start to emerge as part of a wider new paradigm of autism.
Advocacy is now enshrined as good practice within services for all users whose mental capacity is thought to be impaired or their communication skills are significantly compromised, within services such as mental health or dementia. The use of advocacy is indeed a mandatory element for many Best Interest and Deprivation Of Liberty Safeguarding decisions and as such is an element of social justice enshrined in the health and social care system (Lee 2007).

Such involvement is seen as ethically and politically desirable but the actual therapeutic outcomes for the service users do not appear to be widely discussed. That is, advocacy appears to be seen as an end in itself (‘giving a voice to the voiceless’) rather than part of the process of care, rehabilitation, integration. A “Google” search of, for example, “therapeutic effects of mental health advocacy” yields remarks, reflections and guidelines, of a largely anecdotal nature, of its importance in improving the experience of service use but there is scant evidence of its long term benefits. A similar search for adult autism advocacy yields no results for that heading. There are results for the transition from childhood and for people who are autistic but whose main challenges lie in their co-existing learning disabilities- and this is entirely commendable- but none of them provide results or even a description of advocacy for adults whose main presenting condition is their autism and no element of a service user voice. Further library searches yield more results but quantitatively few and less still of a positive or encouraging nature.

This surprising (even disturbing) discovery suggests that the “professional practice setting” is one which is in its infancy (on a micro and macro level) and any research undertaken at this stage has the potential to be profoundly informative in its development to maturity.

My initial primary objective was to address the question: “Does advocacy lead to better long-term outcomes for vulnerable people” (with specific reference to autistic people)? My subsequent findings (or the lack of them) has led me to dwell on the lived experience due to the absence of autistic voices either in the research or ‘grey material’, leading to an ethnographic approach further refined, due to my own neurology and challenges I have faced, to an auto-ethnographic approach. The null hypothesis, albeit in a qualitative context and quite anecdotal, is that advocacy for autistic people is weakened due its absence of authentic voices and it follows that the ‘A’ hypothesis would be that practice will be more meaningful (more correspondent with the priorities and aspirations of its service users) and effective (achieving its objectives) if that disconnection is addressed and eliminated.

Itknonen and Ream (2013) clearly identify the rapid rise of autism as a subject for debate and policy from the nineteen seventies decade onwards, further boosted by the sharp rise in diagnoses (as opposed to actual incidence) in the period from the outset of the millennium: approximately one child in one hundred and fifty in 2000 to one child in sixty eight by 2012 in the United States of America (Centre for Disease Control and Prevention 2016). Itknonen and Ream (op. cit) also point out, somewhat uncritically, that the rise in advocacy (again using the United States of America as their palate) is child- and by thus by default parent-orientated, litigation and service access-centred and modelled on themes of pain and loss. (Even referred to as “pain-loss” advocacy in legal terms.) With the discourse around themes such as these, it is little surprise that many years later Dowson et al (2007), in their contemporaneous study of advocacy access for adult autistics in the North West of England found a picture of failure and victimisation at school, referrals being refused, service models basing around unsuitable medical categories, the inevitable difficulties in funding and accountability, poor to no understanding of the value of advocacy and worst of all little hope or even resolution from any party to improve the situation. Little wonder that the subjects of the study reported enhanced levels of every measure of social and economic marginalisation in their adulthood. By way of further illustration, the National Autistic Society (2016) report an eighty five per cent level of unemployment among working age people on the spectrum in the United Kingdom; a figure which would be unacceptable for any other group.

Practice is rooted, therefore, in the discourse as stated and so is its malaise. Otherwise stated, it is an ontological issue. Using twentieth philosopher Wittgenstein as a guide (Brochhausen 2006) we can see reality as a ‘state of affairs’ which are combinations of objects (basic parts of phenomenae) which cannot be further simplified: language exists to describe these states of affairs and this consists of propositions of varying meanings and complexities. So- reality cannot be entirely understood by language and we have work within a combination of interpretation and other symbols (such as our actions) to understand it- but if truth or reality cannot be fully comprehended by language we have to make a common sense of language (giving a nod to phenomenology) when modelling our actions such as allocating or canvassing resources, drafting policies or educating the emerging generation of professionals. This is further complicated when we consider that neurodiverse people experience language differently and are further disadvantaged in the process. This dissonance is likely to be the most significant factor which may affect my proposed research. The redirection of the ontology from “cure-talk”, “pain-loss advocacy”, the culture of “indistinguishability”, of disease, epidemic and disability to support, inclusion and a focus on ability- long since adapted in other fields of health and social care research yet somehow delayed in this.

It is for this reason that the auto ethnographic approach is to be adapted.  Constructivism expresses the idea that mental structures and operations are actively constructed by one’s mind rather than passively acquired.

Jensen-Hart and Williams (2010) provide a definition:

“Autoethnography is a term used to describe a research approach whereby the author/researcher draws on his or her own experiences written in the form of personal narratives to extend new knowledge”

From the view of the researcher, Wall (2006) explains:

“Traditional scientific approaches, still very much at play today, require researchers to minimize their selves, viewing self as a contaminant and attempting to transcend and deny it. The researcher ostensibly puts bias and subjectivity aside in the scientific research process by denying his or her identity.”

From the view of the ‘researched’ Dashper (2015) suggests:

“Autoethnography is a method that may enable researchers to begin to challenge the dominance of traditional academic forms of writing and researching and open up possibilities for including other voices and perspectives, including those of the researcher herself, and thus begin to break down some of the power divide between researched ‘others’ and all-knowing researcher.”

In Wall’s (op.cit.) further explanation, this approach is an epistemological trend which poses an alternative to positivist perspectives which still insist that research is an elite closed shop driven by quantitative and experimental processes; that social phenomenae can and indeed must be reported with the scientific detachment given to studies of, say, genetics or astrophysics.

This approach has its roots in post modernism and critical theory and as such holds appeal for researchers who are pursuing those erstwhile marginal voices who have otherwise failed to pass the filter of traditional research methods (feminist researchers being conspicuous examples) and is now even being accepted among professional educators and leaders in health, social care and education for reflection, supervision and training purposes (Jensen-Hart and Williams op.cit., Granger 2011, Farrell et al 2011). It provides an opportunity for a research product which contains a democratic iterative structure and thick content. It follows axiomatically that autistic researchers of the autistic experience will be drawn to this approach.

Ponterotto (2006) describes thick content (or thick description) thus,

“1. “Thick description” involves accurately describing and interpreting social actions within the appropriate context in which the social action took place.

  1. “Thick description” captures the thoughts, emotions, and web of social interaction among observed participants in their operating context.
  2. A central feature to interpreting social actions entails assigning motivations and intentions for the said social actions.
  3. The context for, and the specifics of, the social action are so well described that the reader experiences a sense of verisimilitude as they read the researcher’s account. For Denzin (1989), verisimilitude refers to “truthlike statements that 543 The Qualitative Report September 2006 produce for readers the feeling that they have experienced, or could experience, the events being described.” (pp. 83-84)
  4. “Thick description” of social actions promotes “thick interpretation” of these actions, which lead to “thick meaning” of the findings that resonate with readers (Ponterotto & Grieger, in press). I like to use the metaphor of a tree to explain the interconnection of these three concepts. The “thick description” constitutes the roots of the tree that nourish and feed “thick interpretation,” represented by the solid trunk of the tree, which in turn feeds the branches and leaves of the tree, which represent the “thick meaning.” It is the branches and leaves that most capture the viewers’ attention, as is the case with “thick meaning,” which grasps the attention of the reader of the study.”

We can see, therefore, that attempting thick content (or description) will help to bring the accuracy, insight, prompts for further research and practice, authenticity and substance in the research required to achieve the stimulus for meaningful and effective practice as mentioned previously in this work.

If we can agree, therefore, that the inclusion of and detailed attention to our research subjects is central to the proposal regarding its relevance to professional practice, equal prominence needs to be given to our involvement with regard to the researcher’s on perspectives and assumptions; an especially acute consideration given the chosen epistemology. Specifically, we have to examine issues of reflexivity, ethics and power. Reflexivity seems to have as many definitions as people who describe it but a helpful summary is provided by Enosh and Ben-Ari (2016) when they describe “a constant movement in and out of one’s experience” and “deliberate awareness using contemplation and intentional activity, recognising differences and generating knowledge” This extremely positive take on reflexivity argues that being ‘reflexive’ is not necessarily something to make us wary, it can be used to create “liminal spaces” in the iterative process, promoting new subject centered ideas and understanding and become a vital tool in informing practice. The other extreme could be found in autoethnographic research which is entirely autobiographical, such as Bruce (2010) whose personalised study of her early menopause or Dapsher’s (2015) account of her recovery from a show jumping injury serve as a fascinating narratives and have their legitimate place in the body of work but my proposal is by its very nature a collaborative project of an autistic researcher working other autistic people. Dapsher (ibid.) does, however, raise some important ethical issues about the revealing of the self in the process and the possibility of co-mingling data (mixing one’s own experience with those of the other people in the study) and, given my relative power in the process, allowing my experiences to predominate. In a study such as mine which aims to promote inclusion of a marginalized group, that would the most hypocritical of consequences. She also advances the potential hazards of making oneself vulnerable in the process. This is expanded in some detail by emerald and Carpenter (2015) whose study of autism mothers (i.e. mothers of autistic people) stresses the emotional impact of this kind of work- and the requirement for self awareness and seeking support. Their most interesting posits are of a more positive nature, as the approach suggests “emotions as data” (reporting how the subjects feel) and knowledge which is “emotionally sensed” (using one’s feelings as a constituent of knowledge). Dismissal of such knowledge is effectively saying “feelings don’t count”. Indeed, the structured interview and the group event are both likely to centre on these issues, so, like Enosh and Ben-Ari (2015 op.cit) the pitfalls of reflexivity and ethics can be inverted and used as a tool for adding quality and informing practice.

 

Another element of reflexivity which is exceptionally relevant in this case is that of translocational positionality:

“This approach aims to pay attention to spatial and contextual dimensions. It emphasises processes (rather than fixing people and ‘groupings’ of people). Difference and inequality are conceptualised as a set of processes, and not as possessive characteristics of individuals, although individuals experience the outcomes of these processes.”

Anthias (2011)

This is extremely helpful in examining my own position of power. The fact that I am autistic like the group I intend to work with would be a gross over simplification and a devaluing of the subjects’experience. I am of course no less or more autistic than any other person on the spectrum (contrary to popular misconception, there is no “mild” autism) but I am, first of all the researcher. I also hold an elevated position by being university educated (three times over and counting) and, unlike eighty five per cent of my fellow autistic adults in the United Kingdom, in work- and earning comfortably in excess of the average income. On the other hand I have raised two autistic children (and two others), have been a single parent three times over, excluded from school, been street homeless, domestic abuse victim, psychiatric inpatient and faced other negative situations which would not (in my opinion) have occurred if I was neurotypical. While I have been lucky to be able to overcome these situations, I need to be mindful that the people with whom I am collaborating may still be facing many of these struggles.

The final main section is a critical exploration and synthesis of the present research position in the field of autism advocacy, such as it is. Murray (2012) provides a helpful historical overview, explaining the origins of autism organisations in the nineteen sixties, entirely parent-led, which successfully built institutional recognition and understanding of the condition, and subsequently achieved differentiation from the concept of ‘mental handicap’ and into the next decades a recognition of adult autism. With awareness established (albeit within relatively narrow communities of professionals and parents) issues of acceptance and the locus of power were challenged from the late nineteen eighties and nineteen nineties decade by people with the condition, resentful and angry of the concentration of resources and decision making on those very same communities of parents and professionals and the continued focus on the “pain and loss” medical view of the condition as explained earlier. This enmity continues and has given rise to the neurodiversity movement, modelling itself on similar lines to the civil rights movement, feminism and gay rights. The research on advocacy is minimal and frustrating, mostly descriptive or historical, with nothing on the library searches I have undertaken which provides an evaluation of the effectiveness of any advocacy services or models of advocacy. Itkonen and Ream (2013 op.cit) provide an example, dwelling as they do on Autism Speaks, the largest advocacy organization in the world. Their founder is quoted as autism having metaphorically abducted his grandson and pursues the most vigorous “pain-loss” model, referring to the condition as a national health epidemic. Their own accounts (Autism Speaks 2014) confirm that less than four per cent of their income is spent on support services, while over fifteen  per cent goes on ‘cure science’ research and some forty four per cent is lavished on advertising and publicity. While the researchers point out that advocacy by litigation, which is at the heart of this model, tends to favour well-resourced parents over those who struggle to find the funds for lawyers, their urge for more research is how to build information networks and more effective lobbying. There is no challenge to the basic assumptions of current advocacy and significantly it refers exclusively to children. Morrow (2013) is another example of this stagnation wherein a new advocacy service is merely described, whose priorities are:  “supporting basic, clinical and behavioral research across disciplines and institutions, creating a research infrastructure, including a statewide web-based research registry, improving and expanding diagnostic and treatment methods and  informing state and federal policymakers about autism spectrum disorders.” There is no discussion of either the effectiveness or the desirability of these treatments which they hope to improve and expand or which policies they wish to promote and still no undertaking to look into inclusive services for education or employment. Tincani (2007) proposes a step beyond the pain-loss approach, which he designates the ‘Consumer Advocacy Model’, in suggesting a more rigorous and person-centred ‘contextual fit’ model. The weaknesses here are that his objections are technical rather than epistemological, ontological or ethical; the discourse is much the same; and, once again, it refers exclusively to children and the control of advocacy remains firmly with parents and professionals. The research suggests a clear pyramid of power in autism advocacy: at the top there are political and legal gatekeepers deciding on priorities and distributing resources with the second layer of professionals working within the limits imposed by that top stratum. Then there are the parents mediating with the professionals and in the fourth and penultimate stratum there are the autistic children. Firmly at the bottom are the autistic adults who effectively disappear upon maturity. There are scattered examples of the empowerment-driven neurodiversity model in mainstream research, such as Waltz et al (2015) who describe this  growing movement, borrowing as it does from mental health survivor groups; it is still descriptive however and we are still looking for an examination of specific outcomes and the lived experience of advocacy from autistic people. Ne’eman (2010) also provides a similar account, albeit more polemical. He explains that:

“The object of autism advocacy should not be a world without autistic people — it should be a world in which autistic people can enjoy the same rights, opportunities and quality of life as any of our neurotypical peers. These words, counterintuitive though they may be to many in the autism community, represent the future that we must guide ourselves toward.”

The vast majority of voices from this neurodiversity model are not in the formal research community however. They are either from within the ranks of journalism (Silberman 2015) or in political activity or the world of blog writing and social media. This proposed doctoral research aims to introduce the neurodiverse paradigm and test it in the context of the lived autistic experience and challenge established practice in the process. To this end I will publish each section (as I have with my work so far) in my own blog (See Appendix B) and publicise it in the various autism social media groups of which I am a member, inviting comments and critique. This will be a formal part of the research process and all comments will be considered for inclusion and the people making them will be acknowledged. The proposal and subsequent progress will be offered for scrutiny to emerging advocacy groups for comments and input and, while I will not be in a position to reward participants financially for their assistance, I will be morally bound to offer time and service in return, drawing on my quarter of a century working in health and social care. I am keen to take advice on making the research accessible to visually or intellectually impaired people. This is not merely a tokenistic exercise, nor is it just part of a lexical argument. Excluding  autistic people from the front and center of their own lives has real and at times shocking consequences. ‘Therapies’ such as ABA (Applied Behavioural Analysis) and TEACCH (Treatment and Education of Autistic and Communication-Handicapped Children) thrive in schools and clinics and they have evidence for their efficacy- but it is their basic objective which has not been challenged. They aim for the eradication of symptoms; to make an autistic person, in the words of ABA rhetoric, “indistinguishable from their peers”. This deeply objectionable ambition would not be tolerated were it to be applied to, say, gay or lesbian school students or any other minority group. Elsewhere there is “packing therapy”, chelation and other quack treatments, as well as the catastrophic damage done by the anti-vaccine movement, even after its leader was exposed as a fraud and stripped of his legal authority to practice medicine. Another aspect of this problem is the de-prioritising of the subject within the social science community. Eyal et al (2014) proposes that autism presently inhabits an “epistemic mirk”. They suggest that social scientists of medicine, psychiatry or disability are focusing on ‘cutting edge’, whereas autism is often observed by family or paraprofessionally and diagnosed by voyeuristic authority (there is no blood test or any form of quantitative measure). In this respect it is similar status to other developmental conditions, addictions or eating disorders.

By way of conclusion, we can see that this proposal sets itself an ambitious target, the establishment of a new paradigm which exists but is waiting to emerge. At the root is the discourse; the language we use and behind our very understanding of truth and reality. Dumont (1998) offers a summary of Foucault which is pertinent to the proposal:

“Foucault urges scrutiny and interrogation of analytical productions that profess “Truth.” This is not to say that he wishes to contest the accuracy of such claims; he has no interest in the pursuit of truth for truth’s sake. As he has written, “… it’s not a matter of a battle ‘on behalf’ of the truth, but of a battle about the status of truth and the economic and political role it plays” (Foucault, 1972: 132). For Foucault, claiming to speak for the truth nearly always amounts to an attempt to appear innocuous in the securing of power for oneself, to institute a “regime of truth” (Foucault, 1972: 133). Religious minorities, political minorities, ethnic and cultural minorities, women, homosexuals, and whole societies who lacked the will to conquer and convert others have been analyzed, defined, and subjugated by those who claimed that their actions were on behalf of truth. For Foucault, truth is dangerous. Its history is one of underwriting pain, suffering, and horror.”

Research in health and social care is an exploration into the future of some of our most vulnerable and special fellow humans. It is in many ways an investment in the future of the human soul. As those researchers we have the privilege of safeguarding that future; if we do not seek to challenge and change practice we need to examine our own motivations. This area is ripe for radical change; the proposed doctoral research is guided for the most part by a need to alter the paradigm of autism, achieved by changing the entire discourse and those who control it. Leadership of research in the setting has been weakened by the reluctance of researchers to engage in the subject beyond a model long abandoned in other areas and the consequences have been dire for the majority of people within this group, with inappropriate therapies for the young and social and economic marginalization for those in maturity. Mainstream advocacy, as exemplified by Autism Speaks, serves to exacerbate and prolong these deleterious processes and a growing alternative movement is gathering momentum. Mertens et al (2011) describes this tension:

“There is bound to be increasing tension between these two groups. One is extremely powerful with high profile celebrities fronting, while behind the scenes powerful interests fund their efforts. What the other lacks in resources, it makes up with passion, global internet networks and the righteousness of and justice of their cause. In the meantime….is calling for quality-of- life type research to be done with them as part of the struggle for inclusion….this means that over the next decade some hard decisions will have to made over what kind of research is done and which is funded. Will it be scientific research into the genetics of autism or even interventions which lack any scientific base in search of a ‘cure’? Or will it be transformative research done with networks….seeking their expertise on research proposals and mentoring?”

Until then the theory is sparse, disempowering and archaic; it requires new methods of enquiry with autistic people at its centre. Wing and Gould’s (op.cit 1979) “Triad of Impairments” have been allowed to become self-fulfilling prophecies but with a new paradigm we can focus on acceptance, inclusion and accommodation; a ‘triad of empowerment’.

 

References

 

Anthias, F. (2011) Intersections and Translocations: new paradigms for thinking about cultural diversity and social identities European Educational Research, 10 (2): 204-217

 

Autism Speaks (2014) Audited Financial Accounts retrieved from https://www.autismspeaks.org/sites/default/files/docs/final_autism_speaks_2014_28229.pdf

Brochhausen, M. (2006) Don’t Panic! It’s the Tractatus Logico-Philosophicus retrieved from https://philosophynow.org/issues/58/Dont_Panic_Its_the_Tractatus_Logico-Philosophicus

 

Bruce, T. (2010) Ethical Explorations: A Tale of Preparing a Conference Paper, Qualitative Inquiry 16 (3): 200-205

 

Centre for Disease Control and Prevention (2016) Autism Spectrum Disorder. Retrieved from http://www.cdc.gov/ncbddd/autism/data.html

 

Dashper, K. (2015) Revise, resubmit and reveal? An autoethnographer’s story of facing the challenges of revealing the self through publication, Current Sociology 63 (4): 511–527

 

Dumont, C. (1998) The analytical and political utility of poststructuralism: considering affirmative action Canadian Journal of Sociology, 23 (2/3): 17

 

*elke, e., Carpenter, L (2015) Vulnerability and Emotions in Research: Risks, Dilemmas, and Doubts, Qualitative Inquiry, 21 (8): 741-750 (Please note the use of lower case letters for the co-author’s initials is as used throughout out the article.)

 

Enosh, G., Ben-Ari, A. (2016) The Creation of Liminal Spaces—Researchers, Participants, and Research Encounters, Qualitative Health Research 26 (4): 578-584

 

Farell, L., Bourgeois-Law, G., Regehr, G., Ajjawi, R. (2015) Autoethnography: introducing ‘I’ into medical education research Medical Education, 49 (10): 974-982

 

Gil, E., Fitzgerald, D., Gillis-Buck, Eva., Hart, B., Lappé, M., Navon, D., Richardson, S. (2014), New modes of understanding and acting on human difference in autism research, advocacy and care: Introduction to a Special Issue of BioSocieties BioSocieties, 9 (3): 233-240

 

Granger, C. (2011) Silent moments in education : an autoethnography of learning, teaching, and learning to teach University of Toronto Press, Toronto Part 1:1

 

Itkonen, T., Ream, R. (2013) Autism Advocacy: A Network Striving For Equity. Peabody Journal of Education. 88 (1): 48-59

 

Jensen-Hart, S., Williams, D. (2010) Blending Voices: Autoethnography as a Vehicle for Critical Reflection in Social Work Journal of Teaching in Social Work, 30 (4): 450-467

 

Lund Research (2012) Purposive sampling. Retrieved from http://dissertation.laerd.com/purposive-sampling.php#maximum-variation-sampling

 

Mertens, D., Sullivan, M., Stace, H. (2011) Disability Communities, Transformative Research for Social Justice in The SAGE Handbook of Qualitative Research SAGE London, 230

 

Morrow, E., Autism Experts Form Research and Advocacy Consortium Rhode Island Medical Journal 96 (8): 34

 

Murray, S. (2012) Autism Taylor and Francis New York, Ch10

 

Ne’eman, A. (2010) The Future (and the Past) of Autism Advocacy, Or Why the ASA’s Magazine, The Advocate, Wouldn’t Publish This Piece, Disability Studies, 30 (1) Retrieved from http://dsq-sds.org/article/view/1059

 

Office of the Public Guardian (2007) Making Decisions, The Independent Mental Capacity Advocate (IMCA) service. Retrieved from https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/365629/making-decisions-opg606-1207.pdf

 

Ponterotto, J. (2006) Brief Note on the Origins, Evolution, and Meaning of the Qualitative Research Concept “Thick Description”, The Qualitative Report 11 (3): 538-549

 

Shaping Autism Research (2016) Reflections on the Cardiff Public Services Seminar. Retrieved from http://www.shapingautismresearch.co.uk/post/141912753380/reflections-on-the-public-services-seminar linked to: https://drive.google.com/file/d/0B83m4GMhHY23TENPSlc2ME9RYVU/view http://www.alexlowery.co.uk/routes-to-autistic-homelessness-and-routes-away/

 

Tincani, M. (2007) Beyond Consumer Advocacy: Autism Spectrum Disorders, Effective Instruction, and Public Schools, Intervention in School and Clinic 43 (1): 47-51

 

Townson, L., Macauley, S., Harkness, E., Docherty, A., Dias, J., Eardley, M., Chapman, R. (2007) Research project on advocacy and autism. Disability & Society. 22 (5): 523-536

 

Wall, S. (2006). An autoethnography on learning about autoethnography. International Journal of Qualitative Methods5 (2), Article 9. Retrieved from http://www.ualberta.ca/~iiqm/backissues/5_2/html/wall.htm

 

Waltz, M., van den Bosch, K., Ebben, H., van Hal, L., Schippers, A. (2015) Autism self-advocacy in the Netherlands: past, present and future, Disability & Society 30 (8): 1174-1191

 

Williams, J., Jauhari, M. (2016) Rude Boy Subculture, Critical Pedagogy, and the Collaborative Construction of an Analytic and Evocative Autoethnography Journal of Contemporary Ethnography 2016, 45 (1) 34–59

 

Wing, L. & Gould, J. (1979), “Severe Impairments of Social Interaction and Associated Abnormalities in Children: Epidemiology and Classification”, Journal of Autism and Developmental Disorders, 9 (1) 11–29

 

Appendix A  https://www.facebook.com/Bananas-In-The-Pianos-1667609000174703/?fref=nf

 

Appendix B https://crawlingoutofmybox.com/

 

Nudibranch Of The Blog

chromodorismagnifica1-a

The Magnificent Chromodoris! Not my adjective, that is its name and very apt, about 6 cm long in maturity. Nudibranchs can be found in most temperatures but this is one of the warm water varieties. To be found between the Indo-Chinese peninsula and Australia, unmistakable with its orange mantle and blue and white stripes.

Speaking of magnificent……..

Kate

ham10

 

Hamlet (or to be exact, Kenneth Branagh’s Hamlet. Which is part of the problem, but more of that later)

 

Which of Kate’s films is the longest? Most would presume it is also her best known: Titanic. Heaven knows that one takes a while to see itself out but no: at 8 minutes short of 4 hours, Ken’s Hamlet makes Cameron’s maritime disaster epic play like a pre-feature short!

Katers will be familiar with the story of her casting in the relatively brief but pivotal role of Ophelia. She had already delivered a Bafta/SAG winning and Oscar nomination-worthy performance in her role-defining performance as Marrianne Dashwood in  Sense and Sensibility, whose lead performer and screen writer was Emma Thompson, formerly married to Branagh. (The British media referred to them as “Ken and Em”). When he adapted the Frankenstein story, Kate was suggested for the maid’s role. Branagh decided Julia Roberts was more suitable but Kate was promised the Ophelia part in his next intended project, Hamlet, without audition. Smart move. Katers will also know that, on the day of her big scene, she received the news that she had secured the role of Rose DeWitt Bukater/Dawson in  Titanic, which makes that extraordinary scene even more fascinating to watch. 

I am not going to take on the massed ranks of Shakespearian scholars by dissecting the story. Shakespeare is by general agreement the most significant figure in the entire body of English Literature; one of the most important and respected practitioners of the arts in mankind’s history. Hamlet is widely regarded as his most important work. Its influence on our language and literary culture exceeds perhaps any other single piece of work. Dozens of phrases in common use were first used in Hamlet. The story is a common trope: Star Wars? Hamlet. The Lion King? Hamlet.

So, for the film itself I should say that I enjoy (note present tense) it a great deal and not just because of Kate’s involvement. For a start, it is close to a faithful word-for-word performance of the play. William Shakespeare is effectively the original screenwriter, (though Branagh scored himself a credit and an Oscar nomination for it). The respect and love for the work- and the passionate wish to do it justice, by Branagh and his acolytes, beams from the screen throughout. At the risk of sounding perverse, perhaps too much. I shall explain.

I have the special Region 2, 2-disc version from (I think) 2006. Before we get the see the actual film, we are treated to a special introduction from Ken (tipping the experience beyond the 4 hour mark.) I can’t say I was thrilled to watch this. Thanks Ken but I will just watch it and draw my own conclusions. If I want to sign up for ‘A’ level English Lit I will. We get to have Ken explain what we are going to see, why it is so important to him and why the entire project is such a landmark. In his ‘sleeves-rolled-up, I’m a jobbing actor who got lucky, when are we playing footie later on?’ manner, which served to annoy many at the time, he explained that he gave ‘pep talks’to the cast and crew, letting them know that their efforts are bound for posterity, generations to come will talk about this etc. This was his Citizen Kane, his Apocalypse Now, his Birth Of A Nation, his Plan 9 From Outer Space or whatever.

Well, we are 20 years down the line and, well……it isn’t. Reviews at the time were deservedly praiseworthy. It snagged 4 Oscar nominations and a decent list of honours at the time- but do we see Kenneth Branagh’s Hamlet on the ‘All-Time Greatest Films’ lists now?

So, there is some hubris. Enough Branagh-bashing. It is not like I don’t like or respect him. He is a huge talent and by all accounts a very good person. His knighthood is richly deserved and he has a body of work, including Hamlet, with which he has every right to be proud. His Hamlet may not have achieved what he hoped but it is still a superb achievement. The cinematography, set design and costumes are a feast for the eyes, his eponymous performance is a triumph and the ensemble casting was bold and for the most part a great success. There are classical acting bankers: Derek Jacobi, Judy Dench and Julie Christie are unlikely to let you down and neither are the cast of less publically-known stage and TV actors but also seeing Charlton Heston, Timothy Spall, Jack Lemmon, Gerard Depardieu, sitcom legend Richard Briers and renowned British stand up comedian Ken Dodd (yes, Ken Dodd!) in the same film is something of a joy. Apart from you-know-who, my favourite performance is Billy Crystal’s Gravedigger cameo. Superb. Also look out for Rufus Sewell as the invading Norwegian ruler Fortinbras. Kate and he had a brief ‘fling’. You can see him with Kate later in The Holiday as her former boyfriend.

Ok, Kate. Ophelia is a young Danish aristocrat, Hamlet’s spurned lover and daughter of Polonius, a kind of Attorney-General to the Danish royal family. No spoilers but I will say things do not end well for her. It is a role of quite frightening emotional intensity; a portrayal of a mental collapse as complete as it is rapid, born of rejection and bereavement, not helped by her inhumane treatment. There are traps: to play her like a brooding adolescent (Ophelia is still used as an example of troubled young women in modern psychology) or as a cartoon crazy person. Kate’s strategy seems to be to infantilise Ophelia; a child-like state as her life and mind unravel, as she is used as a vessel for the frankly sociopathic machinations of the Danish royal court- itself an unravellling institution doomed for destruction. It is a strategy which is entirely convincing. Kate has said that Branagh helped her overcome her fear of Shakespeare (and perhaps by extension high-end literary roles) and we should be thankful to Branagh for his role in Kate’s evolution. Her reputation was already secure despite her youth but as she always says, you need to keep developing and testing yourself. Next up was Titanic and the the addition of global stardom to critical acclaim.

A must-watch. But book a day off!!

 

 

 

 

“You’ve got a lot of nerve, to say you are my friend” (Bob Dylan)

Bananas                                       piano

 

Books!!

Ok the s**t just got real. As promised this blog (its first sections anyway) are going to be a preview and invitation to comment on the work on the work I produce in the process of the doctoral studies at the University of Salford. So far you have just been, er.. treated (?) to some observations of mine prior to me completing any academic work. Now I have and here it is.

“Critique of

Lang, R., Regester, A., Lauderdale, S., Ashbaugh, K., Harding, A. (2010)

Treatment of anxiety in autism spectrum disorders using behaviour therapy: A systematic review.

Developmental Neurorehabilitation.13(1), 53-63.

Jules Akers

Doctoral Foundation,

University of Salford Professional Doctorate in Health and Social Care

 

Part One:

Critical analysis 

This work is a critique of a systematic review of research into the use and effectiveness of Cognitive Behaviour Therapy as used for the intended benefit of autistic clients (Lang et al 2010). The intention is to offer a description and summary of the work at the outset followed by an introduction, description and justification of the formal review template used to guide the critique. Having established both subject and method there will be an analysis of the article’s aims, structure, methods, findings and implications.

The study (op.cit.) is a free standing retrospective systematic review supported by fifty nine references plus the nine reviewed studies, with elements of a meta analysis:

“A systematic review answers a defined research question by collecting and summarising all empirical evidence that fits pre-specified eligibility criteria.

A meta-analysis is the use of statistical methods to summarise the results of these studies.”

(University of Edinburgh Centre for Cognitive Ageing and Cognitive Epidemiology online 2013)

This part will be concluded with a valedictory section explaining that the article, while being for the most part sound (in the eyes of an admittedly inexperienced reviewer) in its structure- and presumably beneficent in its intentions, is debilitatingly limited in its scope and has a major flaw throughout its content. Most significantly it engages with a discourse on the subject (and client group) which is at best mistaken and at worst offensive and makes the article frankly unusable if not a little dangerous. Logically there will also be a discussion on the ethical aspects of the article tied in with the conclusion that the article has technical problems, not rooted in the poor expertise of the research team but in the fact that they have such a poor range of reference points, both qualitatively and quantitatively, which is clearly a fundamental problem for a systematic review. This in turn appears to be a result of the wider discourse on the subject whose central defect is the absence of autistic voices. This will lead conveniently to Part Two where, as a reflective work, the reasons for this conclusion will be yet more apparent.

 

The evaluative schedule is the first version of the Evaluative Tool for Qualitative Studies developed by the Health Care Practice Research and Development Unit (Long et al 2002). This was selected for four reasons: one is that it was the subject of vigorous recommendations by course tutors, another is that it appears to be easily understood and applied (perhaps the rationale for the first reason), a further one is that it is a still-rare tool in that it is geared towards quantitative research studies which in itself will hopefully raise the profile of that category of research which is still seen as secondary to quantitative research in health and social care (Long and Godfrey 2004). This appears an inappropriate balance given the deeply (in fact uniquely) personal nature of the work of health and social care professionals who are constantly and correctly exhorted to root their practice on evidence-based research. Finally (and most significantly) it is geared (Long et al ibid. pii) to the subject’s applicability to service users and informal carers which is, subjectively, an ethically welcome intended outcome (more of which to be discussed in the Part One conclusion). Returning to its practical rather than ethical advantages, the schedule suggests a simple four parts system with fourteen sub-categories and an additional ‘catch-all’ heading of miscellany and relatively non-controversial observations: “other comments” such as how many references were used. There is some deviation from schedule due to the progress of the narrative and resulting necessary adaptations, so a reader who is used to following the schedule may find themselves departing from their expected path. The first section requires a “Study Overview” commencing with the study’s bibliographical details but as this has already been provided we can move along to the article’s combined description and purpose and this follows.

The article provides a brief description of its clinical parameters, firstly “autism spectrum disorders” and the briefest possible (though admittedly succinct and accurate) definition of anxiety disorders: “anxiety disorders are characterized by a disproportionate fear reaction to relatively benign stimuli.” (Lang et al op.cit) The descriptions of autistic conditions and anxiety can be forgiven for their swift dispatch (readers of “Developmental Neurorehabilitation” could be expected to have an elevated knowledge of these subjects and other readers can quickly ‘Google’) but the language engaged: “impairment”, “excess”, “debilitating”, set the tone for an article which pursues a rigidly biomedical/disability paradigm of autism. There is a brief remark (citing another systematic review) on the disproportionate preponderance of anxiety disorders among autistic people; research which could only conclude that anxiety could occur somewhere between eleven and eighty-four per cent of the autistic population, providing a range of seventy-three per cent; enormously problematic with regard to credibility and usefulness of the data further degraded by a failure to provide comparative data for either the neurotypical or combined populations. There are remarks and citations in the following passage which confirm its higher incidence among the autistic spectrum population relative to, as they put it, “other populations” but still no hard figures or even indication of their range but most significantly therein lies the central and arguably insurmountable problem of the article. The cited studies refer to:

“For example, the occurrence of anxiety within groups of children with autism has been found to be higher than groups of typical developing children [10,11]. Even when compared to other at risk groups (i.e. children with conduct disorders and learning disabilities), children with ASD were significantly more likely to be diagnosed with an anxiety disorder and/or to have more intense anxiety symptoms [12,13].”

coomb

(Lang et al op.cit p2)

The explicit frame of reference for these cited studies may have been autistic people in childhood (a check of the four references’ titles indicate children in one, adolescents in two and no specific life stage in the other) but at no point in the title or abstract of the article under this critique does it specify any life stage. Further and repeated reading of the entire article confirms that this is a systematic review of the effectiveness of Cognitive Behavioural Therapy which specifically excludes any autistic person over eighteen years of age (bar one participant in one study in his early twenties). Some of the studies do not even address its effect on autistic people of any age, preferring to examine its effectiveness among parents. Were this the stated intention of the article in its title, abstract, introduction or conclusion this would not be problematic but as it stands the research appears to be applying results of childhood studies to a population with a condition which remains throughout the lifespan and is not medically life-limiting, leading to a possible conclusion that the entire project holds such little credibility as to be completely undermined. Further evidence to support to this critique will be provided later.

 

There is due recognition of the likely complications of applying a treatment designed for neurotypical individuals to people who are not (describing but not specifying alexithymia [see appendix B]). The sampling is purposeful in that the data is carefully selected (Tracy 2012). Exclusion criteria was quantitatively rigorous, of the one hundred and sixty-four studies which emerged from the abstracts, eleven were selected on the basis of there being at least one person on the spectrum included in the study, then two were finally removed, one because it was not a study of Cognitive Behavioural Therapy and the other because it was not a study of anxiety treatment. It appears to use random effect sampling, acknowledging the variability of the different studies despite the admittedly rigorous exclusion criteria (Liu 2013) (Borenstein et al 2007).  Comparing the nine groups presented a challenge as they ranged from one with fifty autistic participants with a median age of ten (also the median age of all one hundred and ten individuals in all nine studies) to one with a single twenty-three year old participant (the oldest in the study). This gives us major problems with effect size,

big-cook-little-cook

“Effect size is a simple way of quantifying the difference between two groups that has many advantages over the use of tests of statistical significance alone. Effect size emphasises the size of the difference rather than confounding this with sample size.”

Coe (2002)

Measures of anxiety also varied substantially, using nineteen different assessment schedules (eight of which were for children exclusively) over the nine studies. The authors thus presented evidence, or “certainty” on a three-graded scale: those on the lowest “suggestive” level which used baseline-intervention only designs (“AB” studies), a middle level of “preponderance” with, among other requirements, agreed treatment fidelity measures and sufficient detail for replication and a ‘Gold Standard’ “conclusive” group with vigorous controls (for example double-blind, placebos) to cover alternative reasons for and coincidental incidences of improvement. The final roll of certainty produced five in the lowest rung of the hierarchy, three on the middle level and just one which met sufficient rigour to be characterized as “conclusive”, with the possibility of leaving the study vulnerable to the classic criticisms of qualitative research: that it is overly anecdotal, subject to researcher bias and lacks the facility to be reproduced in a scientific manner (Mays and Pope 1995).

 

It could be suggested that the substantial problems with this article are a reflection of a wider research issue on the subject. The main ‘technical’ issue being the restricted demographic group (children only with a sole exception of a twenty three year old man) and the frankly miniscule amount of reviewable studies even given this narrow focus is echoed by Gaus (2011). She states clearly that there is simply no research on the effectiveness of Cognitive Behavioural Therapy for adult autistics, merely on its effect on the adult population as a whole and its possible application to adult autistics. She further confirms that autism itself is still seen as a childhood issue even among the research community despite the beyond-dispute knowledge that is no such thing combined with the vast body of Cognitive Behavioural Therapy evidence over the last forty years. Binney and Blainie (2013) support this and develop the idea in a study which does explicitly explore this particular therapy in adult autistics (this being four years after the initial publication of our reviewed article.)  Interestingly, albeit tangentially, they conclude that the evidence for the therapy in adult autistic anxiety is doubtful (though they found it beneficial in dealing with other common issues related to autism.) Further support is provided by Kuroda et al (2013) who found that anxiety is not successfully addressed with this therapy but it is effective for the wider issue of emotional regulation and again draw attention to the paucity of adult-based research in this subject. Even another therapy (another discipline altogether in fact: occupational therapy) which was the subject of similar systematic review (Tomlin and Swinth 2015) concluded that research into autism related therapies often did not even address the needs of autistic people at all, regardless of lifestage; far more attention is paid to those of their parents, even then mostly mothers. In a study subsequent to this, Bejerot et al (2014) provide numerical evidence for elevated anxiety among autistics (whilst recognizing the differentiated nature of its presentation among autistics) but they also conclude that research on co-morbid conditions is “sparse”. A university library online search of “Anxiety Adult Autism” yields over two hundred results but among the first fifty references, just seventeen are about anxiety in adult autism, including one which refers to “young adults” without reference to age parameters (White et al 2012) six are about children or adolescents, four are about parents of autistic children and adolescents and one is a study of foetuses. (The remainder are about drug trials with animals).

dogs

(The prime autism research subjects. Apparently).

The quantity and quality of research on a given subject is possibly a reflection of the priority given to the subject by the research community which in turn is an echo of its importance in wider policy and opinion forming circles. So the implications for policy in this study suggest that there is an assumption that solutions for autistic children are applicable and even directly transferable to their adult counterparts and indeed the very same people decades into the future regardless of the events in their lives and any changes they experience. It implies an infantilizing of the autistic population and a dismissal of the entire concept of adult autism. The practice and policy implications of this phenomenon can be described alongside a discussion of its ethical, ontological and epistemological considerations.

aging autism

In procedural terms of Ethical Committee approval, there is no indication of any such clearance, informed consent would only be an applicable concept in the context of the original articles and even then the only consent would be from parents rather than the recipients of the therapy and there is no discussion of ethical issues in those original articles cited by the systematic review. There was no disclosure of funding sources though it is not clear how relevant that is in the production of a systematic review.

 

In conclusion, the ‘technical’ problems of this article (narrow demographic focus, difficulties in comparing groups due to their enormous disparity, effect size, one study alone having sufficient rigour to be legitimately labelled “conclusive”), are tightly dovetailed with the many problems with the nature of its discourse and conclusions. An illustration is the recommendation that Cognitive Behaviour Therapy could be best applied to autistic people in combination with other therapies, including Applied Behaviour Analysis.

 

“Applied Behavior Analysis is the process of systematically applying interventions based upon the principles of learning theory to improve socially significant behaviors to a meaningful degree, and to demonstrate that the interventions employed are responsible for the improvement in behavior.”

http://www.appliedbehavioralstrategies.com/what-is-aba.html online 2016

ABA is shit

This therapy is not even described let alone justified in the article, yet the discourse on autism is such that it is suggested by research and administered in practice as a default position- even in this article about anxiety- and Applied Behaviour Analysis is not even an anxiety treatment. It is an intensive programme of operant conditioning designed to make an autistic child “indistinguishable from their peers” and is the subject of the fiercest debate among autistic people, relatives and professionals (Silberman 2015) (See appendix B). Yet as in many studies, it is listed among the recommendations without a word of prior discussion. Such is the ‘normalisation’ paradigm in autism research and thus practice that the very outcomes which are sought, let alone the means with which to achieve them, are not informed by those who are the intended targets of these interventions. Hence, as mentioned, this systematic review could not find a single rigorous study of Cognitive Behavioural Therapy for autistic people which can be applied to anyone over eighteen. (The twenty three year old is not in the “conclusive” study.

This ontological position gives rise to a discourse dominated by the language of “impairments”, “deficit”, “debilitating”, “excess” and “disorder”- all mentioned in the first paragraph of fifty eight words. The essential dialogue is absent.

As Christian (2011) explains,

“Dialogue is the key element in an emancipatory strategy that liberates rather than imprisons us in manipulation or antagonistic relationships. Although the version of power considers mutuality weakness, the empowerment mode maximizes our humanity and thereby banishes powerlessness”.

Powerpuff_girls_characters

 

Part Two

Reflective analysis

 This section is an attempt to reflect on the experience of reviewing the article in Part One. I will be using the amended version of Gibbs’ Model of Reflection as used in a prior assignment.

Gibbs Model of reflection is helpfully symbolized thus:

gibbs

 

University of Kent (2015) https://www.kent.ac.uk/learning/PDP-and employability/pdp/reflective.html

My reflections will be based on this cycle as I have only used this one and it was a helpful framework, though for the first time the “conclusion” will be as Gibbs intended: an opportunity to discuss alternative courses of action; a ‘conclusion’ that never actually ‘concludes’ but rather gives us a stopping point before moving on with elevated insight and effectiveness.

Part One of the assignment can be seen as containing a detailed “description”, so as per the model, I will offer the most primitive of initial reflections based entirely on my emotional response to the article (which was a good deal more substantial than I anticipated) and examine how it clouded my final execution. Then I shall explain the model of reflection, followed by an exploration of the concepts of reflection, reflexivity, critical thinking and subjectivity as applied to my assignment and how personal development of these concepts will hopefully help me develop my own epistemology as a thinker and researcher. Issues of power and status will be enshrined in this exploration as I hope they will be in all of my future academic work, particularly my final dissertation. The conclusion will summarise this analysis in that it will explain that my two principle learning experiences from this exercise are:

  1. That I need to develop my currently under used disposition for reflective (and reflexive) practice; to use it is a self checking mechanism and as a means to explore new ideas and perspectives otherwise lost in the rush of the process.
  2. That the research on autism appears to be dragging behind other groups and has an embedded culture or paradigm rooted in positivist, biomedical models of research and thence practice. My research needs to be part of the reversal of that process.

A further observation could be that I am unlikely to achieve to second if I do not achieve the first.

The first three reflections I have to share on an entirely unsystematic basis both centre on the enormity of the task I face in the next four and a half years.

One is that I have a huge amount to learn about research methods (I knew this beforehand but the execution and completion of Part One showed me that my journey as researcher has barely begun) and my ‘rookie’ status is reinforced, whether I find this intimidating or exciting I have not yet decided, though the true answer is probably ‘both’.

Another is that the discourse on the subject (and this will be pursued specifically further in this section) has a similar journey to make. Having repeatedly read the article and then related academic work it is clear that the autism research community and the actual autistic community have been looking in and walking down opposite directions for a long time and the vital process of uniting those communities is hardly any more mature than my own journey as a researcher- but both processes have begun.

I was expecting to produce two very different pieces of work: the first a dispassionate examination of the article, focusing on the procedural and technical aspects of the systematic review with perhaps brief references to issues of power and the ruling paradigm which dominates autism and its effect on professional practice. The second section would be more splenetic and overtly address personal and professional reflections, issues of status, power, ontology, epistemology and generally ‘my position on the research’ particularly as an autistic person and father as well as a nurse, teacher and manager.

It became impossible to keep those issues away from the supposedly neutral Part One and perhaps that is the most significant lesson I have learned from the exercise though the quality of Part One has suffered as a result.  Having subsequently examined (and reflected) on the work and issues of reflection I can see that while I can grasp rigour, reliability and similar concerns of technique and structure fairly easily, my great challenge now is to understand my place in the research, how to use my position to critically analyse the body of knowledge, how to be reflexive (self regulating) so that my work in future will not just be robust but also insightful and challenging; a focus and catalyst for change. An analogy would be the musician who just knows the notes transforming into one who moves and inspires the audience. Reflection will be my route to that transformation.

In terms of evaluation, (what was good or bad) the experience, beyond the emotional level, became a little more enervating as it progressed as I realized the authors of the systematic review had struggled to find suitable material to review though they did not explicitly acknowledge this problem. That fact that there was just one “conclusive” study on such a significant subject and even that one had a profoundly limited demography.

By way of analysis, I am keen to explore the issues as outlined in the introduction. First of all, subjectivity, as I feel this was something I barely contained in Part One. Peshkin (1988) argues that subjectivity is not something we should neither exclude nor is it something we should blindly accept. We can embrace it by all means but also be extremely vigilant for its effects. Subjectivity, like fine wine, is an excellent servant but a terrible master.

To return to reflection, its principal benefit of reflection is suggested by Kinsella (2010) (via Donald Schon) and Kinsella (2009) who provides a helpful extension of the concept of ‘practical wisdom’ or “phronesis” to use its original Aristotlean term. This is a branch of knowledge which stands at the spare point of a triangle from ‘episteme’ and ‘techne’ at the other two. The former can refer to immutable decontextualized action and knowledge while the other is the more spontaneous reactive individualized activity. Phronesis can be seen as a counterpoint; applying wisdom to a practical situation- and this is only achieved with periods of reflection. Another helpful analogy might be Freud’s structural theory of the mind, with episteme as the ‘super-ego’ imposing rules from above, the techne as the ‘id’, acting on circumstances while phronesis is the thoughtful mediator; the practical wisdom borne of reflection, providing the strong ‘ego identity’ required for good mental health or, to depart from the analogy, insightful research. This exercise informs me of the need for phronetic processes in my research.

 

There is a possibly an additional unanswerable case for reflexivity:

 

“Reflexive movement or realization depends on breaking out of an existential disciplinary, professional, paradigmatic, or specialty, “thought style” (cosmology, basic assumption, mindset) which limits awareness and thereby movement. Reflexive movement does not need to be argued for since it is the human capacity which defines our existence. However, such movement is a struggle, reminding us-should dualistic knowledge be an aspect of social structure-that the journey to a sociopsychological metaposition is an attempt to reconceive our human existence.”

Holland (1999)

I take this to mean that reflexivity is a process of self-regulation and flexibility, vital components for an effective researcher; and this requires an almost psychotherapeutic level of self awareness.

I can trace my reaction to the article directly to issues of power and status and it is explicitly mentioned in Part One, not least with respect to the recommendation, without a word of clarification or a scrap of evidence, of Applied Behaviour Analysis. This is not a place to discuss this particular intervention but its default endorsement is typical of the research. It is almost teleologically justified, yet among autistic people (myself included) it is seen as institutional abuse and most of my fellow autistics are passionately opposed, particularly those who have suffered and developed post traumatic stress disorder as a result (not me, I was diagnosed too late)- but attempts to find critical research lead to frustration and disappointment. Why? Because the research does not convey the autistic voice. The United Nations Year of Disabled Persons slogan in 1981 was “Participation and Equality”, their slogan for the International Day for Disabled Persons in 2004 was “Nothing About Us Without Us”, yet for autistic people this does not apply. Critical theory exhorts us to ask such questions as whose voices are being heard? Whose are being ignored? What theories are being used? (Fook and Gardner 2007)

The answer to the last (behaviourism for the most part) is indicative of the fact that the only voices being heard are those of service management and parents (in fact almost entirely mothers) of autistic children.

Whose are being ignored? Autistic ones. Fook and Gardner (ibid.) have revealed this process, suggesting that “What works?” may be a valid question but “What’s wrong” is a neglected question in desperate need of asking. Even more pertinent are the dangers of management led evaluation of outcomes- a protocol model which can easily become a means of reinforcing existing practices. The insistence on a scientific or quasi-scientific ‘evidence-base’ can serve to compound this process even further. So it follows that the outcomes sought for autistic people with, as with the example of the article, co-morbid conditions are not necessarily those of the group who is seeking (or at any rate receiving) help. Entirely harmless behaviours are sought to be eradicated and potentially harmful ones are responded to with interventions no longer (if ever) used with the neurotypical population. As mentioned in Part One, an opening paragraph of fifty eight words mentions “impairment”, ”severity”, “excess of repetitive body movements” and “disorder” three times. How many body movements have to be repeated in order to be characterized as excessive? Who is counting? Not autistic people I am certain. We are even castigated for being interested in things. We have narrow focused interests because we wish to make sense of the world and we find them calming and reassuring. Yet while the world moves away from the biomedical model of disability to the social model and the policy of diversity is embedded throughout all services on pain of ruin and prosecution, the autism research community stays firmly entrenched in its normalization “indistinguishable from their peers” paradigm. Even the term “High Functioning” can be seen as effectively meaning “more like normal people” (see Appendix B.) Even exceptionally marginalized groups such as offenders or people with severe and enduring mental illnesses have a greater manifestation in their corresponding research than autistic people. The only authentic autistic (and anti Applied Behaviour Analysis) voices online can be found in the so-called ‘blogosphere’ wherein feminist, LGBT, and transgender autistics are also heard in abundance- but this is on the margins and lacks the applicable validity and credibility of genuine academic research and as such can only be cited as an appendix in this work.

Some aspects of my intended approach were confirmed by my review and reflection on the article. Related to the limitations based approach outlined above (biomedical model, normalization paradigm and similar), the positivist method of research is an approach I am not inclined to adopt as it echoes the and amplifies the assumptions of the those very same ideas and schools of thought. Now being abandoned in most disability studies, the individualized medical focus on functional deficits and attempts at cures and eradication. Mertens et al (2011) expose the gulf in the positivist approach to disability research and its obvious interpretative alternative. They quote a survey handed to some disabled adults asking “What complaint cases your difficulties in holding, turning or gripping things?” They suggest an alternative: “What defect designs in everyday objects like jars, bottles and tins cause you difficulty in holding, gripping or turning them?” As we have seen, research in autism appears to have been left trailing in this shift. But as they (ibid.) continue, it will not be sufficient just to produce an exquisite interpretive project, collect my doctorate and get published (though I intend to do all of those things) while the disabled (or autistic) community who contributed as subjects do not experience any elevation in their conditions or status. It is not my intention that the only autistic person to benefit from my research will be me. They (ibid.) summarise work which suggests that research could not just focus on strengths, coping skills and adjustments and examine the external social and environmental context which ‘disables them but would also be overtly and unapologetically political, the researcher would be a practical resource for the ‘subject’, who would be involved in the decision making process of the research.  This is characterized as the “Emancipatory Approach” and I have made the first step in that direction already by starting a blog which has been posted to the autistic advocacy groups on social media, with an invitation for anyone to post their comments (See Appendix B). I intend that a good deal of my energies on the doctoral programme will be devoted to exploring and devising methods of participant involvement and how the research will be of practical benefit to those participants and the wider autistic community.

To conclude (or “what else could have been done” to provide Gibbs’ alternative title), as I indicated in the introduction there are two steep learning curves on which I have embarked in the process of reviewing the article.

One is that I have a tendency to ‘shoot from the hip’ and do not prioritise the reflective process. The model used in this instance has been personally effective twice- beyond that framework there is an abundance of methods and concepts which, if applied with care, can help me self regulate, use subjectivity to positive effect, clarify my epistemological position and increase my cognitive flexibility. There could even be positive spin offs for my professional and even personal life. I am also aware that I will need to spend a good deal of energy and use support to ensure this is done.

The other is the parlous out moded state of much autism related research (with some profoundly honourable exceptions) which is possibly unique in its adherence to approaches and paradigms long abandoned on other avenues of disability research. I feel a responsibility to be part of a process which helps autism research and thence practice to lift itself to new approaches which will in turn lift the autistic community.

 

revolution

 

Jules Akers 2016

 

 

References

 

Applied Behaviour Research (2016) Getting to know ABA. Retrieved from http://www.appliedbehavioralstrategies.com/what-is-aba.html#cite1

Bejerot, S., Eriksson, J., & Mörtberg, E. (2014). Social anxiety in adult autism spectrum disorder. Psychiatry Research, 220 (1-2), 705-707.

Binnie, J., Blainey, S. (2013) The use of cognitive behavioural therapy for adults with autism spectrum disorders: a review of the evidence. Mental Health Review Journal. 18 (2): 93 – 104.

Borenstein, M., Hedges, L., Rothstein, H. (2007) Meta-Analysis, Fixed effect vs. random effects. Retrieved from

https://www.meta-analysis.com/downloads/Meta analysis%20fixed%20effect%20vs%20random%20effects.pdf

 

Christians, C. (2011) Ethics and Politics in Qualitative Research. In N. Denzin & Y. Lincoln (eds.) The SAGE Handbook of Qualitative Research (pp: 61-80). London: Sage Publications Ltd.

 

Coe, R; (2002) “It’s the Effect Size, Stupid: What effect size is and why it is important”

Paper presented at the Annual Conference of the British Educational Research Association, University of Exeter, England, 12-14 September 2002.

 

Fook, J., & Gardner, F. (2007) Practising critical reflection: A Resource Handbook. Maidenhead: Open University Press.

 

Gaus, V. (2011) Cognitive behavioural therapy for adults with autism spectrum disorder. Advances in Mental Health and Intellectual Disabilities. 5 (5), 15 – 25.

 

Holland, R. (1999) Reflexivity Human Relations 52 (4), 463-484.

 

Kinsella, E. (2009) Professional knowledge and the epistemology of reflective practice Nursing Philosophy 11 (1), 3–14.

 

Kinsella, E. (2010) The art of reflective practice in health and social care: reflections on the legacy of Donald Schön. Reflective Practice: International and Multidisciplinary Perspectives

Special Issue: Engaging Reflection through the Arts in Health and Social Care 11 (4), 565-575.

 

Lang, R., Regester, A., Lauderdale, S., Ashbaugh, K., Haring, A. (2010) Treatment of anxiety in autism spectrum disorders using cognitive behaviour therapy: A systematic review. Developmental Neurorehabilitation. 13 (1), 53-63.

 

Long, AF., Godfrey, M., Randall, T., Brettie, AJ., Grant, M. (2002) Developing evidence based social care policy and practice. Part 3: Feasibility of undertaking systematic reviews in social care. Leeds: Nuffield Institute for Health.

 

Long, AF., and Godfrey, M. (2004) An evaluative tool to assess the quality of qualitative research studies. International Journal of Social Research Methodology Theory and Practice. 7 (2), 181-196.

 

Kuroda, M., Kawakubo, Y., Kuwabara, H., Yokoyama, K., Kano, Y., Kamio, Y. (2014) Cognitive-behavioral intervention for emotion regulation in adults with high-functioning autism spectrum disorders: study protocol for a randomized controlled trial. Trials. 14, 231.

 

Mertens, D., Sullivan, M., Stace, H. (2011) in Denzin, N. and Lincoln, Y. (ed.) The SAGE Handbook of Qualitative Research (pp: 227-242). London: Sage Publications Ltd.

 

Peshkin, A. (1988) In Search of Subjectivity. Educational Researcher. 17 (7), 17-21.

 

Tomlin, G., and Swinth, Y. (2015) Contribution of Qualitative Research to Evidence in Practice for People With Autism Spectrum Disorder. The American Journal of Occupational Therapy (Sep/Oct 2015), 1-4.

 

Tracy, S. (2012) Qualitative Research Methods West Sussex: Wiley-Blackwell.

University of Edinburgh Centre for Cognitive Ageing and Cognitive Epidemiology (2013) Systematic reviews and meta-analyses: a step-by-step guide. Retrieved from http://www.ccace.ed.ac.uk/research/software-resources/systematic-reviews-and-meta-analyses

University of Kent (2015) Reflective learning. Retrieved from https://www.kent.ac.uk/learning/PDP-and-employability/pdp/reflective.html

White, S., Bray, B., Ollendick, T. (2012) Examining Shared and Unique Aspects of Social Anxiety Disorder and Autism Spectrum Disorder Using Factor Analysis Journal of Autism and Developmental Disorders 42(5), 4-84.

 

Xiaofeng, S. (2013) Statistical Power Analysis for the Social and Behavioral Sciences, Basic and Advanced Techniques Hove: Routledge.

 

 

 

 

Appendices

 

 

A

 

Link to the reviewed article

 

https://www.researchgate.net/profile/Russell_Lang/publication/41000032_Treatment_of_anxiety_in_autism_spectrum_disorders_using_cognitive_behaviour_therapy_A_systematic_review/links/546f57980cf2d67fc0310df0.pdf

 

 

 

 

 

B

 

Links to autism blogs as promised in the two reviews:

 

(Alexythymia)

http://musingsofanaspie.com/2013/01/31/emotional-dysfunction-alexithymia-and-asd/

(Applied Behaviour Analysis- by a former ABA Therapist)

https://sociallyanxiousadvocate.wordpress.com/2015/05/22/why-i-left-aba/

 

(High and Low Functioning- my own blog)

http://crawlingoutofmybox.com/2015/10/22/i-say-hi-you-say-low-paul-mccartney/

 

Featured Nudibranch

 

Here is the Spanish Shawl, another dazzler which is unusual among nudibranchs as it is quite a good swimmer. This is rare footage of human-nudibranch interaction, though I advise you avoid the utterly unnecessary musical accompaniment. Does not live anywhere near Spain.

Kate

TDM

Speaking of apparel (shawls in this case), our Kate section dwells on a recent addition to her body of work in which she portrays a dressmaker, subtly suggested by the title “The Dressmaker”.

Long overdue I would like to offer my observations on this film which I much preferred to Steve Jobs (as brilliant as that is).

The-Dressmaker-Gallery-07

The Dressmaker is a film which is at once dazzling, moving, amusing and exceptionally sexy. I usually find a film (or works of art in general) irritating when it does not know what it wants to be. The Dressmaker could have fallen into that category. It is by turns a romantic comedy, costume/period drama, serious drama and camp melodrama- and rather than failing to be one or another, it is all of them. On top of everything, it succeeds to be a spaghetti western with frocks and no guns!

the_dressmaker_kate_winslet_jpg_351x0_crop_q85

Her character Tilly Dunnage is a fashion designer returning to her tiny rural Outback village to care for her ailing mother. She had to leave due to accusations of killing a boy in school when she was 12. Superb performances from Judy Davies, Hugo Weaving and Liam Hemsworth (who showed he is not just eye candy for the ladies and I imagine a significant number of gents.) Spoilers not allowed (and I doubt it is in any theatres now) and the frankly barmy story has so many twists it would take forever to explain it, so as usual I will just dwell on Kate. Its central themes are revenge and redemption and the way the villagers had to choose one or the other.

TDM montage

The reason the story can take on so many forms and still work is down to the acting, mostly Kate as she is the eponymous ladies’ haberdasher. To use the dressmaker analogy, she is the stitching that holds the unlikely outfit together and as always the full range of emotions are delivered with apparent ease. I doubt it is easy she just makes it look like it is. There are elements of some of her best characters, Mildred Peirce as an independent working woman, feisty Rose Dawson, a little taste of Clementine in a drunk scene, avenging Aussie Ruth Baron (Tilly could be her grandmother! I would love Kate to complete an Australian Avenging Angel Trilogy: Holy Smoke, The Dressmaker and a final chapter perhaps based a little further back in time.)

The critics were not impressed, except the domestic Australian press which showered it and her with its own awards. As for box office, “frankly my dear” etc.

I enjoyed The Dressmaker far more than I did Steve Jobs, perhaps because the former is a star vehicle for my favourite non-related person and she is strictly support in the latter. Perhaps it is just a reflection of my preferences: quirky, unpredictable, sexy and funny.

Brutal with a warm heart.

The Dressmaker gif

“War! Huh! Yeah! What Is It Good For?” (Barrett Strong and Norman Whitfield)

Bananas                                                                                                                 piano

blog image

It is highly fashionable among those engaged in the practice of manipulating opinion (for good or ill) that they are at war with something they dislike or that there is a war against something they like.

Not an actual war you understand. With actual weapons and actual people getting actually hurt. When sovereign state or states formally declare military hostilities against another. Usually when one set of powerful people want things thaqt neighbouring rich powerful people have and cannot do so without killing, suffering and crippling expense (borne by those neither rich nor powerful of course) On a less ambitious but no less horrifying scale are civil wars, gang wars etc. Same outcome. But no, not that.

We are talking about the (usually) less terrifying metaphorical use of that small but somehow still enormous word.

There are a few interesting examples, some may hold more credibility than others:

  • War On Cancer (initiative by US President Richard Nixon in the 70s which is unusual in that it led to less death)
  • War On Poverty (initiative by US Lyndon Johnson in the 60s not a great success)
  • The War On Drugs (not going terribly well either)
  • The War On Women (term used by women’s rights advocates in the developing world)
  • The War Against Boys (Book protesting treatment of boys in schools)
  • The War Against The Poor (coined by anti-austerity campaigners)
  • War On Want (UK based charity) and my very favourite,
  • War Against Christmas (“a liberal plot to ban the sacred Christian holiday” that’s right I did not make it up.)

bugs-bunny-this-means-war

You see how it works? ‘Rhetorical’ wars. Calling it a war gives your cause ‘gravitas’; it draws people’s attention. Think of the sporting contests hyped for commercial advantage or sequel films where hostilities between the protagonists have reached such a level that only the word ‘war’ would do it justice.

Perhaps more significantly it elevates the people involved. Campaigning against poverty? For equal rights for a marginalised group? Or to save Christmas?

Why call yourself something so mundane as a campaigner or an activist or a policy maker when you could call yourself a WARRIOR!!   

     whats your pointOK I’m getting to that!

Walking among us there is a peculiar breed of “warrior”. “Warrior Moms”. (Not just warriors, they are mothers too! In our strange oedipal society that pretty well ranks them alongside the saints. Or so they wish.)

So what is a Warrior Mom and what is this war they wage?

First of all they are pretty easy to spot. Not by physical appearance but quickly by what they say, who they say things about and for how long.

They will talk about their autistic children- which is fine- but always about how their children’s condition, behaviour etc but most importantly the effect it has on them, how tired they are and how hard their life is. Then they quickly give up any pretence about talking about anything other than themselves. Brace yourself for some whiney self-indulgent prattle and, most intriguing of all, semi-digested pseudoscientific dogma.

That’s right, they are, for the most part, “curists”. They are switched on to the idea that autism is a tragedy and an avoidable one at that.

Best known among them is Jenny McCarthy, the somehow-famous-part-time actress with an autistic son who lurks the corridors of ghastly events like the Autism One conferences advocating quackery with all the scientific credentials of next door’s cat.

Jenny McCarthy

But there are plenty, like Lisa Ackerman who heads up a Quack Gang called ‘TACA’: Talk About Curing Autism which makes as much sense as setting up a group called ‘TADFBAN’: Talk About Ducks Flying Backwards At Night, as it will never happen and what good would it do anyway?

And they follow such channels of insanity as “Age Of Autism”: apparently we are in an “age of autism” which was started by mercury (the element, not the planet or singer of Queen) which found its way into our children via vaccines (now holding as much scientific credibility as the Flat Earth Society)….which leads us to the High Priestess of the Warrior Moms, Kerri Rivera, now in hiding in Mexico as the authorities close in on her wretched Miracle Mineral Solution bleach enema treatments.

Kerri-Rivera-with-her-son.jpg-300x300

Oh and she makes her son sit in an oxygen chamber every day to cure his autism. For the last ten years. Progress unknown but I can guess.

My message to the Warrior Moms:

You are “warriors”? To be a warrior you need to be at war. Who is the enemy? Your children.

You are waging a campaign against their unchangeable neurology. Them, basically. And in failing to vaccinate or using “therapies” like MMS, chelation, GcMaf, oxygen chambers etc you are also at war against science, logic and compassion.

You are also fighting a war against individuality and diversity.

You can’t possibly win but the only casualty in this war will not be you, it will be your children.

And in my opinion you only get to call yourself a warrior if you are in harm’s way; if there is a good chance you will get hurt. I suspect the chances are you end every day without a hair out of place or a chip on the varnish on your manicured nails.

So stop calling yourself a “Warrior Mom”, try something more fitting. “Narcissistic Abuser” sounds about right.

Or try something different: knowledge, compassion and acceptance.

I am the lucky father of 2 on the spectrum and 2 off: all 4 awesome. We got the diagnoses nice and early in their school careers. It was vital as it served as a trigger for extra support- not for futile and cruel attempts at a cure. They are all grown now- they all developed differently, as with all unique beings. Now my autistic daughter is enjoying her first year at university and my Asperger’s son has just accepted a music teaching post at his old school! What’s the secret? There is no secret. Unless support and acceptance are secrets.

so_what_happens_now

Don’t despair- we have the Autism Mums. (And Dads!)

Remember the speech patterns of the Warrior Moms? (Quick reminder: 1st phase how difficult their children are, 2nd phase how hard their life is because of those burdensome children, 3rd phase the bellicose determination to cure their child regardless of the combined cruelty and futility of those attempts at a cure and finally and by far the longest phase just generally about themselves.) Well it is easy to spot a genuine autism parent by their speech patterns too. First they talk about their children, how great they are and how much they love them. Then possibly what problems they have and how they are helping them deal with them. If they ever complain, it is about how they struggle to get appropriate support for their children and the times they encountered ignorance and abuse but never, not once, a complaint about their children. They rarely say it but you know they would give anything to make a better life for their children. It is a privilege to know these inspirational women.

 

Featured Nudibranch

Berghia corerulascens

Berghia corerulascens- one of the slightly larger ones at up to 7cm but still a little beauty and relatively nearby (French Mediterranean).

Steve Jobs

SJ1

This is Kate Winslet’s third UK cinema release of the year, after A Little Chaos and Insurgent, with another to follow in a few days, which makes me quite a happy little bunny.

As the title implies, it is a biopic of the IT “Top Apple” pioneer Steve Jobs, the man who brought you your beloved i-pads etc. , directed by Danny Boyle from beautiful downtown Radcliffe, Bury.

Kate’s role is that of Joanne Hoffs, his Head of Marketing and primary confidante (“work wife”). As such she is the second most featured actor in the cast as understandably the greatest camera time goes to Michael Fassbender in the title role.

As a film its most striking and impressive aspect other than Kate is the way the editing and direction moves the story. In a film which is not much more than a series of conversations it would be easy to lose momentum or fall into sentimentality (especially given the parent-figure sub-plot); but the screenplay is delivered with the minimum of waste and superb economy. As such it reminds me of Glengarry Glenn Ross. And it is fair to say that Fassbender delivers his part with exceptional skill, conveying Jobs’ weapon-grade charisma to perfection.

But that is not why I went to see it, is it?

Kate’s  role is deeply significant in that she plays the supporting actor position to perfection. When Jobs makes a provocative statement her her response is clear but underplayed- the easiest option would be to pull faces, wave her arms etc but she has the capacity to make the impact without pulling from the focus from the central character. Kate is a team player, rather like Hoffs!

Of course as a massive fan of Kate this would be frustrating- and it is- until she gets her big scene- and then we see what she had been hiding up to that time. She pulls off a particularly dazzling trick of subtely falling back into Hoffs’ native Polish accent when stressed. No tears or histrionics, Hoffs is a prominent business professional- and it would have dragged the film into soap opera but her performance was believable and no less moving.

Throughout the story Kate portrays a woman whose love and respect is always unconditional but often harshly critical. The most sincere and nourishing kind.

Hoffs comes over as a brilliant woman of immense strength, intelligence and compassion, so no wonder they chose Kate to portray her.

 

 

“I say hi! You say low!” (Paul McCartney)

Bananaspiano

 

High and low

Hi low

High and low? High society? Getting high? High-brow? Highlights? “Your love keeps lifting me higher” (Jackie Wilson) Low-brow? Feeling low? Low-life? A low blow? “This is a low” (Blur)

It looks like we quite like “High”. Not so much “Low”. They are almost synonyms for “Good” and “Bad”.

So…..are we Ok with using it in our community? What kind of autistic are you? The good kind or the bad kind? The “high-functioning” type (well-spoken, shy, nervous, might have a job, maybe went to college, doesn’t say much unless it is about Medieval Architecture, seems to know a lot about Dr Who, possibly a serial killer)? Or the “low-functioning” type (doesn’t ‘say’ anything, scary, angry, throws stuff, enjoys the odd dirty protest now and then)?

Neither? That is what I suspected!

So as Edwin Starr might have sung: “Functioning labels?! Huh!! What are they good for? Absolutely nothin’!”

 

Discourse

discourse

The research project has not started yet but one thing we have addressed in the Mary Seacole Building (Nursing, Midwifery and Social Work at University of Salford) is the idea of “discourse”.

Discourse? This is the nature of communication over a certain subject or debate. Not just what is said, it is the images which are used, the people who use it, the kind of language. The networks, the alliances, the policy makers, opinion formers, artists, scientists. You control the discourse, you control the outcome.

How did the women’s movement make such gains in the last 50 years? Why is racism no longer acceptable? Campaigns? Legislation? Yes sure but without feminism or the civil rights movement winning control of the discourse we would still be stuck in the Jim-Crow/ pre-Equal Pay Act era. They didn’t have the guns or the money but they had the arguments and used them well. The people with the guns and the money simply had to suck it up!

 

whats your point        I’m just getting to that……..

The link between autism rights and the discourse on the subject is as close as two coats of paint and my point is that the functioning labels and their implications and the consequences for autistic people are as deep as the sea bed where my beloved nudibranches live.

Here is an example of the ‘discourse’ around autism:

Shite  This is publicity material for a film by the notorious “Autism Speaks” organisation (one of those groups who definitely ‘have the money’.)

Contemplate the images of the caring concerned parent and the doe eyed victim child. Then see the superimposed title “Sounding the Alarm”!! “The numbers grow” (like we are cancer cells) “Crisis”!! It all screams: Autism!!! Run!! Hide!! Call the Army!!

Accept this kind of language and what else will you accept? The idea that autistic people are intrinsically wrong, diseased, even dangerous? Above all that they need to be cured. And where does it lead? We are already there.

On the one hand there are illegal but still-operating ‘therapies’: Bleach enemas anyone? I am not making it up! Google Miracle Mineral Solution. Electric Shock treatment as a punishment? Oh yes. Google the Judge Rotenberg Centre but not on a full stomach. Openly and unapologetically abusive attacks on autistic people, mostly children which has gone largely unchallenged by anyone except small numbers of unpaid advocates, even ignored by the major advocacy groups like the National Autistic Society.

Then, and in some ways worse still, are the officially and medically accepted interventions. Packing therapy? Forced mummification and refrigeration of autistic people so they stop being so damned autistic with all that flapping and stimming etc. Or the wildly popular Applied Behaviour Analysis (ABA) which seeks to brainwash autistic children ‘Pavlov’s Dog’ style into being more ‘normal’, or in their own Orwellian term, “indistinguishable from their peers”. None claim to cure autism, just to make it invisible so they don’t get bullied. Funny that- does racist bullying lead to the victim being blamed and urged to be more white? Homophobic bullying? Just stop being so queer? I don’t think so!

And that is my point. The discourse is based on the idea that autistic people are a little less than regular folk and are thus less entitled to their rights; they need to be altered in the image of the neurotypical world.

horse_feathers_stickersp217732695787160972en8ct_400

Horse Feathers!!

Which brings me back to the high/low functioning label (which is, in fairness, less applied now due to changes in the discourse!)

Why is it a load of old horse feathers?

  1. This is permanent? Someone who functions highly one day will in all probability function less highly the next. In fact changes in your functioning can change WAY more frequently. I know mine does!
  2. High-Low. Is that it? One or the other? No grey areas here? How very autistic!
  3. What does it actually mean? Functioning? There are two fantastic people I know who are definitely “High Functioning” (I believe having an intelligence quotient-IQ- of 70 or more is one definition) but cannot deal with social situations and require support workers in any such situation- yet they are both well on track to graduating from university with First Class Honours degrees. So that is ‘low’ functioning in one vital part of their life and exceptionally high in another. Another person I know who is labelled low functioning and lives in a care facility has compiled a brilliant list of interview questions for potential care staff; better than anything I could come up with and I am a head of a dementia community. So it is meaningless? No I don’t think so. What is basically meant by these labels is:  High=resembles a neurotypical person. Low=doesn’t. Functioning labels are effectively a primitive way of saying how much you have adapted to neurotypical standards and I’m not having it.

Are labels all bad? No! I just like them to be both helpful and accurate. Not asking much am I? So can I suggest some of the following:

Someone who is autistic (that’s right: one does not ‘have’ autism any more than one ‘has’ gay or Belgian), may also have coexisting conditions, we often do in fact, so could they say someone IS autistic with

  • Complex learning needs (don’t care so much for the term ‘learning disabilities’)
  • Complex communication needs (i.e. ‘non-verbal’)
  • Complex mental health needs
  • Social anxiety
  • Depression
  • Dyspraxia
  • Distressed behaviours (really don’t care for the term ‘challenging behaviours’)
  • I don’t know, you think of something.

 

Either way, ‘high functioning’? High time we stopped saying it!

 

Nudibranch Of The Blog 

Glaucus Atlanticus
Glaucus Atlanticus.

Behold this little blue gem! In fact it is commonly called the Blue Angel. About an inch long, blue on top to blend in with the sea and silvery-grey underneath to blend with the sea bed. Can be found in most sea water bodies especially in the Southern Hemisphere but only if you look very carefully!

 

And finally, on the subject of angels, Kate:

MP9

Mildred Pierce, the television mini series, is an adaptation of the 1941 novel which was famously adapted for cinema in 1945 whose lead performer was Joan Crawford. Her performance is regarded as her finest in an impressive canon of work and she was rewarded with an Academy Award. In the modern television version the eponymous lead is Kate Winslet and I genuinely believe it to be the finest acting performance in the history of that busy medium and she was similarly laden with awards, including an Emmy (the highest available accolade in the medium of television).

For a start, it spans 5 one-hour episodes, so she effective shot a 5 hour film- and she is in every scene! That is a lot of scenes!! So merely as an act of stamina, both physical and artistic, it is an astonishing achievement.

But my main reason for advocating her performance in such terms is precisely that: the performance. To briefly give you a synopsis without spoilers, she is a Depression era housewife who splits with her husband and supports herself with a cake business (Kate and cake! How can that be anything less than perfect!) and embarks on an affair with someone who would in a past era be called a ‘cad’. Unquestionably a feminist heroine with the firmest of credibility. But the most important feature of the story is her toxic complex relationship with her elder daughter (who becomes an opera singer like I said it is complex), based on events around her younger daughter. Any more and I will be ruining the plot.

As the New York Times said at the time “Ms. Winslet is an amazing actress who transparently conveys the heroine’s smallest nuance of feeling, be it shame, irritation, motherly love, anger, sorrow and, once she meets her dashing upper-class lover…lust” and so she is. And all with the greatest economy of effort. Her most impressive sequence is in the first two episodes immediately post-separation when she tramps the streets of Glendale, California with a look of loss and desperation whilst maintaining enough vestiges of dignity needed to present herself as a credible employment candidate.

Possibly her greatest artistic achievement. Recommended without reservation (some tasteful nudity).

 

Some links:

http://autismwomensnetwork.org/is-autism-speaks-a-hate-group/

http://www.huffingtonpost.com/todd-drezner/autism-cure_b_1588498.html

http://autisticatedalmayne.com/category/mms/

http://autisticadvocacy.org/2014/08/prisoners-of-the-apparatus-the-judge-rotenberg-center/

http://blogs.discovermagazine.com/neuroskeptic/2011/01/24/packing-autistic-kids-a-french-scandal/#.Vip__vmrTIU

https://en.wikipedia.org/wiki/Glaucus_atlanticus

http://www.hbo.com/mildred-pierce

 

 

 

“Existence, well what does it matter? I exist on the best terms I can.” (Ian Curtis)

Bananas
;piano

Hello again, fellow autistics/ Kate lovers/ Nudibranch enthusiasts/ anyone who is just passing by.

In the last blog entry I explained that I will be using this blog to draft and sound out my forthcoming research into advocacy. I will not be starting until October the first but in the meantime it might be helpful to give you my research proposal as a way of helping you know what to expect. Please feel free to ask questions and/or make comments.

The research proposal

    The therapeutic effect of advocacy for vulnerable users of health, social care and education service users.

PROBLEM DEFINITION
Advocacy is now enshrined as good practice within services for all users whose capacity is thought to be impaired or their communication skills are significantly compromised. The use of advocacy is indeed a mandatory element for many Best Interest and Deprivation Of Liberty Safeguarding decisions.

Such involvement is seen as ethically and politically desirable but the actual therapeutic outcomes for the service users do not appear to be widely discussed. That is, advocacy appears to be seen as an end in itself (‘giving a voice to the voiceless’) rather than part of the process of care, rehabilitation, integration. A “Google” search of, for example, “therapeutic effects of mental health advocacy” yields remarks, reflections and guidelines, of a largely anecdotal nature, of its importance in improving the experience of service use but there is scant evidence of its long term benefits.

OBJECTIVES
Does advocacy lead to better long-term outcomes for vulnerable people?
The primary objective is to address this question.
The secondary objectives could be as follows:

• Establish an applicable definition of advocacy.
• Establish prominent models and media of advocacy.
• Examine the practice of advocacy as used among the autistic community in the Stockport/Manchester area.
• Compare outcomes among those who have used advocacy services extensively and those who have not and possibly a speculative examination of which of the prominent models and media of advocacy have been the most effective in providing the most favourable outcomes.
• Suggestions for further research which may expand on the previous point.

These outcomes could be as follows:

1. Incidence of co-existing conditions
2. Incidence of institutionalisation
3. Incidence of safeguarding reports
4. Educational achievement
5. Transition to and success in the workforce

6. Social engagement (family contact, hobbies, social groups)

ASSUMPTIONS
1. My general assumption is that the presence of advocacy leads to better outcomes than the absence of advocacy but I am mindful that this an assumption based on my limited personal observation and nothing more.
2. Autism advocacy appears to take a great variety of forms, there is a prominent strand, of mostly neurotypical people, which promotes cure and eradication of behaviours, there is a substantial and, for the most part, formally adopted paradigm which seeks to promote the prospects of autistic children by ‘advocacy by proxy’ and see themselves as part of a collaborating team with professionals on a caseload basis (these are usually in a formal paid capacity) and a third, evidently growing, strand which consists largely of autistic people who see themselves as a discrete political entity and an extension of similar movements such as civil rights, feminism, the LGBT movement etc. and campaign on issues of abuse, equality and so on.
I do not intend to take these assumptions into my research and I am aware that these personal observations are very broad generalisations and are not necessarily an accurate reflection of the nature and intentions of any of these models.

METHODOLOGY
This will be

• Broadly qualitative, as it will be important to examine clients’ personal experience of advocacy and the personal motivations of the advocacy practitioner, so there would a phenomenological element to the work.
• An examination of the specific outcomes as outlined (albeit tentatively) above. Precise numbers to make a representative sample to be guided by my supervisor.
• I hope to be able to access advocacy organisations of some standing in the local area, such as Inscape/Together Trust in Stockport.
• Of course it will be preceded by a review of the literature (such as it is).
OUTCOMES
I hope to provide evidence for the following:
• The nature and practice of advocacy in the client group.
• The comparative outcomes (as possibly outlined above) for clients whose advocates have adopted the different approaches.
• The comparative outcomes for clients who did and did not access advocacy services.

IMPORTANCE OF THE RESEARCH
A good analogy would be the case for gender equality. It is agreed by everyone beyond the fringes of the debate that is a good and desirable objective. It is in some ways a teleological argument and it requires no further justification.

It is still helpful, however, to know that gender equality also carries with it enormous economic benefits.

And so it is with advocacy, it should be because it should be.

But it would be helpful to know- and would be a boon to the advocacy movement and thence their clients- if there was evidence of its health, social and educational benefits- and further evidence of which models of advocacy benefit in which ways can only be further beneficial.

If I find no evidence for its therapeutic value that would be significant in itself and would not detract from its intrinsic value.

    Nudibranch Of The Blog

 

Photographer - Greg McFall/ONMS
Photographer – Greg McFall/ONMS

The Regal Sea Goddess! This little beauty can be found in the sea near Florida.

And finally, (while we are on the subject of Goddesses), Kate.
This is a review of her most recently released film which I wrote and posted on two facebook groups I admin. I hope you enjoy and apologies if you have seen it before 😉

My expectations were very high but they were exceeded. Sabine’s character is a mixture of Sylvia, Mildred Pierce and Sue (Jude) as she is a woman of immense compassion, passion, talent, intelligence and beauty who has struggled to survive and make her way in life. Of course that is no stretch for Kate she is all of those things and more.
But this film provoked a more extreme emotional reaction from me than any other of her films. Even Finding Neverland and that film took me by surprise, I wasn’t prepared. I thought I was prepared for this. Wrong.
I will not reveal the story, that is for you all to enjoy in your own time. (And you must). But apart from that what is it that makes A Little Chaos so special?
Yes, the story. Struggling against the odds, responding to and making sense of a tragic past. I’ll say no more of that. Kate will tell you better than I ever could anyway.
The theme of chaos/order- pursued with great subtlety. You are not insulted by constant references to it, the film gives you credit for your intelligence.
Of course, visually: the scenery, whether it is chaotic nature or the ordered gardens, the extraordinary costumes (Corset Kate is back!! Yay!!!) And the Place of Versailles. Breathtaking. I mean that literally. They make you gasp. Best of all of course, Kate. And I can promise you there are more close ups in than any other Kate film since maybe Titanic. Her presence is overwhelming, she dominates the screen as we know she does, with the slightest glance, a haunted look in her eyes, a slight twitch or flutter that communicates the deepest most complex emotions.
Other than Kate, there are of course superb performances, Alan Rickman as ever, Stanley Tucci playing a gay fop (!), Jennifer Ehle- and look out for a cameo from Phyllida Law (Emma Thompson’s mum). And as I think most of you know, Mia- in a brief mysterious silent scene.
The dialogue is beautiful, never more so than in a scene where Sabine talks to the King about roses in such a way as to rescue a fading mistress of the court from oblivion.
So a feast for the mind, the eyes, the ears but most of all the heart. My response was more extreme than usual, by the end I had to hide by the emergency exit until everyone left.
As an autistic person I do not often follow social cues accurately, reading people is not always easy. But Kate is so brilliant I know what she is trying to convey even with the slightest glimpse.
The poet William Blake once said,
“To see a World in a Grain of Sand
And a Heaven in a Wild Flower,
Hold Infinity in the palm of your hand
And Eternity in an hour.”
..I feel I achieve those things in my times with Kate. And now, in A Little Chaos, I feel it more than ever.

Kate-Winslet-Alan-Rickman-star-in-A-Little-Chaos-trailer