Autism, the Enigma: Transformation through Arts in Community Health

January 2nd, 2013

In 1943, psychiatrist and founder of the Children’s Ward at Johns Hopkins University Hospital, Leo Kanner gave a name to a perceived developmental disorder in children, made apparent by a range of behavioural and communicative dysfunctions.  His paper, ‘Autistic Disturbances of Affective Contact’ gave an overarching characteristic to this group of symptoms, which noted the sufferer’s inordinate involvement with and focus on the ‘self’.  Borrowing from this description, Dr Kanner, defined the condition as Autism. (Scott et al, 2000)  The timing of its coinage landed at the emergence of the First Modernity, as World War II was drawing to a close.  Equally significant was its manifestation during the dawn of broadcast media’s explosion.  The nature of the symptoms diversified, became more specified and descriptive:  ‘impairment of social interaction, a communications disorder, bizarre behaviours, bizarre response to sensory stimuli, impairment of use of imaginary play’.  (Williams, 1996)  Certain stereotypes surfaced, which stuck to the condition, including ‘aloneness’ whether aloof, avoidant, disinterested or odd.  Another phenotypical behaviour was described as a ‘sameness’ – repetition in movement through ‘rocking’ and ‘flapping” – and in speech via echolalia or selective swathes of recalled idiomatic expression.  (Rogel-Ortiz, 2005)  Sameness also outlined a resistance to change, which could be so extreme as to trigger a cascading kind of meltdown in reaction to differences in familiar environments.  Sometimes self-injurious or aggressive behaviour was cited as characteristic.  (Baird et al., 2000)  Previous to its assigned nomenclature, understanding of the seemingly random selection of its symptoms was confused, and inappropriately identified as ‘mental retardation’ ‘schizophrenia’, or even ‘childhood psychosis’.  However ‘Autism’ became more individuated by being classifed as “inborn autistic disturbances of affective contact’ by Dr Kanner.  (Scott et al., 2000, p.1)  Because the specifications were broad and rather vague, with no actual physiological markers or genetic indicators, the sufferer of this nefarious yet commonly recognizable condition called ‘Autism’ was grouped within a spectrum of disorder.  The founding language of Psycho Analysis, tagging Autism in the 1940s first modernity, gave way to clarified meaning in the descriptive language of contemporary objectivity.  The modified term for what became perceived as a neural disease was reinvented as Autism Spectrum Disorder or ASD. Perceptions of its meaning set standards for diagnoses today. However the mysteriousness of its condition was augmented by discrepancies voiced amongst professional clinicians and ASD communities in the  definition of its parameters,.  Further struggle towards interpretation and treatment currently exists between Health officials and arts therapists and practitioners. (White, 2008)

Leo Kanner studied the case histories of 11 children, 2-11 years of age, whose conditions “differed so remarkably from anything reported so far”. (Kanner, 1943) Nevertheless the children differed widely in certain other characteristics such as family structure, abilities and ages.  Kanner’s discovery of common deficits within the differing circumstances of his subjects is still considered relevant in diagnosis and treatment, he claimed that both environmental and hereditary traits were causative.  (Scott et al, 2000)  He revealed 4 crucial characteristics of ASD children, such as the “inability to relate to themselves …. to people and situations”; shutting out external stimulus to affect isolation from others and self direction in activities;  “Anxiously obsessive desire for the maintenance of sameness” and excellent rote memory.   Autism’s definition evolved in the context of speculation around the research and development inspired in attempting to determine its physiological / psychological cause.  In the 1960s,  expansion of psychological services required better delineation of disorders to assign resources, including paid for psychological support.  The Diagnostic and Statistical Manual of Mental Disorders, Edition 4 (DSM IV) now classifies Autism as one of a few Pervasive Developmental Disorders (PDD) including Pervasive Developmental Disorder not otherwise specified (PDD-NOS), Asperger Syndrome, Rett Syndrome, Childhood Disintegrative Disorder (CDD).  DSM IV gives a clear, clinical description of the condition which provides the foundation for professional behaviour in conducting assessments and issuing differential diagnoses, but it doesn’t recommend or inform intervention.  It points to a “presence of markedly abnormal or impaired development in social interaction and communication and a markedly restricted repertoire of activity and interests”. (APA, 1994 p. 66, cited by Scott et al, 2000, p.3)  Its terminology and language in various editions reflects the desire of biomedical professionals to describe disorder in a way which would enable distribution of resources and services.  More generally, terminology often dictates how professionals think and what they do. (Scott et al., 2000)  A classic example of how language, used to describe a concept, influences how professionals interact within it can be witnessed in the jargon to describe family members in the ‘Autism’ community.  Dr Kanner originally noted that the parents of ASD children were not really “warm-hearted fathers and mothers” (Scott et al, 2000, p.3), but Bruno Bettelheim’s  Freudian language and terminology took this assertion to another level (Severson et al, 2007) .  He determined that the embedded psychological disturbances evident in the ASD child are a forgivable reaction to cold or harsh methods of parenting used during infancy.  The ‘refrigerator mother’ (2007, p.65) archetype established in ‘talking therapy’ was used regularly as rationale for removing ASD children from home and family for institutional placement. (Scott et al., 2000)  The ‘aloneness’ of ASD children is exhibited from the beginning of life, so can not be attributed to child rearing techniques.  Current research shows parents don’t incite Autism, yet professionals in fields of psychology and medicine continue to attribute causative factor to parents in diagnoses.  (Scott et al, 2000).  The clinician’s language is devoid of humanity and is thus a faulty communication.  There is no sympathy for the long suffering parents who grapple with this mysterious condition; even though professionals, themselves, are uncertain about its effects on participants and how to work with the disorder.  The traits of ASD children confound even the most experienced of SEN teachers (Scott et al, 2000)  The biomedical model for Autism determination and diagnosis hosts an array of contradictions, projections and self fulfilling prophecies:  notions of alone-ness aggravated by removal, ineffective and damaging communication and compulsive operation according to the same narrow remit of stereotype regardless of  scientific discovery.  Bettelheim’s diagnostic framework has since been conversely applied to denote the “refrigerator professional” (Scott et al, 2000).  Physician, heal thyself.

Donna Williams, herself diagnosed with Autism, has recontextualised psycho-biomedical stereotypes according to the media which have perpetrated them in her seminal book Autism:  An Inside Out Approach:  An Innovative Look at the Mechanics of ‘Autism’ and its Developmental ‘Cousins (1988).  In addressing the assigned ‘odd’ behaviour and choices of ASD experiants she refers to the film ‘Family Pictures (Saville, 1993) and its depiction of a family’s plight with ASD as rehashing the “circus freak”.  She indicts the film as punishing anyone who questions myths of ‘normality’, and goes further to assert that the film fosters exclusion and underestimates the ASD experiant’s ability to care about or even perceive it.  The portrayal gives credence to the idea that they should be controlled and moved out of the way where they cannot disturb the general public.  Williams cites ‘House of Cards‘ (Li, 1993) for its portrayal of aloofness, attributing a special knowingness of the secrets of the universe to the ASD experiant as if a fallen angel who is closer to god.  It conspires to place response to the experiant in a limbo state between awe and fear.  In ‘Back Street Dreams’ 1990 (Hitzig and O’Malley) the Autism child is depicted as avoidant and inadvertently profiled as an abused child.  The effect encourages social judgements of carers/parents as contributing to a child’s Autism.  Williams does not hold back in asserting the devastating consequences for parental self esteem and mental / emotional state.  The overriding theme in these depictions highlights the conversion of stereotype to fact via broadcast media.  Stereotypes are woven into the fabric of experience, through mainstream media, which are indiscriminately allowed to perpetrate such mythology through leviathan distribution.  Williams perceives this media wash as the logical  extension of the willful myopia of the health care profession in treatment of ASD.  Williams is bemused that, in dealing with behaviours classified as ‘avoidant’, the field of psychotherapy does not acknowledge or explore the possibility that its success, in stimulating improvements in behaviour and cognition, might be directly attributable to such factors as: the lack of flourescent light in the room where the therapy is conducted or fragmented noise from the media overload of TV/radio, experienced in the average house hold.  Most significantly she bemoans the absurdity that no investigation regarding how improvements might hold a direct correlation to “access to art materials in the therapist’s office” (Williams, 1989, p.10).  She notes an avoidant tendency to ignore the factors in which an ‘autistic’ person might, and often does, spontaneously outgrow developmental difficulties.  To an ASD experiant, the ignorance of many ‘neuro-typicals’ gives the impression of no empathy.  In particular, the perceived lack of emotion expressed is given a quickfire interpretation, which is not explored organically but presumed an impairment of feeling:  lack of emotions and numbness, impervious to pain.  Assessments of experiants as not understanding the humour of jokes, in which they are expected to engage, at their own expense, seems self explanatory.  A seeming lack of curiosity in one’s environment is immediately converted to ‘a lack of imagination’ (Williams, 1988, p 11).  Different ways of moving and relating, which are seemingly incomprehensible become ‘bizarre’ behaviour.  Different forms of processing information, which translates to difficulty in understanding ‘neurotypical’ information, becomes ‘mental retardation’.  Slap on a label, shove it on a shelf.  Did it ever occur to esteemed professionals that ‘bizarre‘ behaviours might be a method of adaptation to help the Autist connect to the outside world, to calm down, to retain control?  Did anyone ever consider disengagement as being an outward manifestation of an overactive imagination?  Williams recalls how she struggled with Autism, particularly with the sounds in her head, which she perceives as having been regurgitated from the fragmented broadcast of her surroundings, devoid of self generation and aggravated by lack of processing time.  The very word ‘Autism‘ might be a glaring misnomer to the experiant, since ‘self focus’ has been clarified by Williams as an overcompensation for the ‘other’-ness of her experiences, whether physical or mental self perceptions.  These very painful manifestations of stigmatization, from the unquestionability of labels (Scott et al, 2000) given exalted status via the broadcast media, show that in treating ASD, appearance has more weight than experience.  Autism’s conception has always been a judgement from the outside:  its appearances rather than how it is experienced.

Dwight Conquergood explores themes of ‘other’-ness, dirt and disorder in his paper ‘Health Theatre in a Hmong Refugee Camp:  Performance, Communication and Culture’ (1988) which documents his experience as consultant for the Environmental Health and Education programme for the International Rescue Committee at Refugee Camp Ban Vinai in Thailand.  He refers to the bureaucratic sabotage by medical health officials of his otherwise successful campaign to help the Hmong adapt to their restricted surroundings by promoting awareness and activation of hygiene maintenance through Arts practice.  He quotes Tzvetan Todorov (Conquergood, p.196) to highlight the principle whereby inferiority is projected on to people perceived to be different, as a way of controlling fear.  He also borrows from Mary Douglas in asserting the connection between concepts of ‘difference’ and ‘dirt’ (Conquergood,1988) within a framework of social relativity.  Dirt, or “matter out of place”, is disorder, not subject to absolutes but culturally specific. (Conquergood, p.197)  Notions of cleanliness indicate the embedded structures and classifications that give a society cohesion.  “People and actions that disturb order, violate categories, mess up the system are branded unclean ….” (Conquergood, 1988, p 197).  Labeling someone as ‘dirty’ or disordered, by association, is an attempt to control anomalies, incongruities, contradictions, ambiguities and perceived as a threat to construct.  ‘Disorder’ then becomes the missing link between ‘difference’ and ‘danger’ and gives it a moral directive, mobilises it with immediate legitimacy.  The dominant force can then exercise ‘guardianship’, impose its systems and habits on others.  Conquergood coins this dynamic the ‘Difference-Disorder-Dirt-Danger Sliding Continuum’ (1988, p.197).  Perceptions of the ‘other’ tend to fuse the semiotic with the behavioral.  It is a well tread journey which dances to the tune of “discursive power and institutional control” leading back to Michel Foucault’s treatise The Birth of the Clinic:  An Archaeology of Medical Perception (1973) (Conquergood citing Foucault 1988, p198).

Williams relates how illness has been historically misinterpreted (1996).  She recalls how women’s physical problems were considered to be caused by the pursuit of intellectual knowledge, and on that basis women were excluded from formal education.  Freudian dialectic presumed that female mental problems were caused by troubles stemming from the womb.  Treatment often addresses ‘offensive’ symptoms and aspires toward the Autism experiant acting ‘normally’.  Practitioners work against rather than with a condition.  Removal of symptoms is a form of conditional inclusion and is more often a relief to parents, carers and professionals than to the Autism experiants themselves.  Extreme forms of treatment might prompt said experiants to hide the manifestations of their condition or distract clinicians from treatment by cosmetic alterations of their behaviour.  To Autists, who identify with their condition as being at least a part of their personality, attempts to coerce them toward ‘normal’ behaviour, as perceived by Neurotypicals, which is unnatural to Autists, is a blatant demonstration by a non-comprehending world of its own lack of tolerance and empathy.  Williams likens the ‘normalization’ process for ASD experiants as teaching an amputee to walk without artificial limbs, a frame or a wheelchair or ‘curing’ epilepsy by teaching people how to behave ‘normally’ during an episode.  Part of the problem here may be to do with the discourse itself:  words to describe a state might inform, partially, but they don’t necessarily empower through understanding.  The well-placed journey to understanding involves being in the right place at the right time and finding the right people to help; avoiding advertisements, opportunists and egomaniacs, checking the signs along the way.  To deal with a condition one must investigate labels, symptoms, causes and beyond.  Williams’s firsthand experience on that road has led her to the conclusion that Autism is a not singular condition, which upholds the multiplicity implied by the profile of living within the spectrum.  The Autists’ adage:  “If you know one person with Autism… you know one person with Autism” could sum up Williams’s proposal that there are different kinds of Autism, different causes and sometimes more than one type present in one being.  Collections of Autism related difficulties are exacerbated by different adaptations to symptoms, different compensations, different personalities.  She describes conditions whereby, in people with different types of Autism, a problem affecting one system of function might weaken other systems when trying to compensate.  There are people who are exactly as they appear and others who are not.  Some deny the condition, others hide behind it. Certain experiants who appear severely affected might have low motivation to develop functional adaptation to manage a mild impairment.  On the other hand, there are others who are severely impaired but appear mildly affected due to high functioning mastery of adaptation and compensation management.  To simplify this complexity is to destroy the vulnerable human beings who must adapt to it.  The most important reason for distinguishing between types of ASD related problems is to help people, using fewer resources, and with a more consistent degree of success.   The causes and successful treatments of ASD related syndromes is contingent upon understanding more succinctly the nature of its impairments, its component parts, how they conspire to render the behaviour of the experiant and whether we are observing the same phenomenon, even if it seems to share the same label.

Currently the DSM V is in its draft stage, due to be finalised by the American Psychiatric Association toward the end of 2013 (Carey, 2012).  It is DSM’s first revision in 17 years and experts predict that the newest edition will substantially narrow Autism’s criteria.  It is believed APA’s narrowing of standards is in response to ASD’s rapidly expanding rate of diagnosis.  At the moment, the estimate is that roughly one in 100 children have ASD.  In the 1960s and 1970s its prevalence was 5 in every 10,000 diagnosed.  There are several reasons cited for this expansion – DSM IV’s vagueness of criteria for example.  Another more worrying reason is that the condition is reaching epidemic proportions.  In April 2012 the rate of diagnosis reached 1 in 32 boys in Salt Lake City, Utah.  Brian Moench (2012) has found a correspondence between this incidence and the collapse of bee populations due to a new crop of pesticides, from Monsanto, Dow and Dupont, which attack insect brains to interfere with their homing devices, preventing them from returning to the hive: a kind of ‘bee autism’.  Using the results from Stanford University’s study, that found genetics accounts for 38% of the risk of autism, with the other 62% attributable to environmental factors; Moench makes a compelling case for autism being more substantially accountable to environmental exposures which exploit genetic defects.  He argues that within the first 5 months of gestation the embryo’s brain develops the most, building 200 billion brain cells. When a zygote is roughly the size of a bee, at optimum brain development, it will be exposed to over 200 different chemicals and heavy metals, 158 of which are toxic to the brain, 100 times more powerful than 50 years ago.   Other reasons for expansion of ASD diagnosis include increased awareness of the condition amongst clinicians and the general public; the availability of high quality services and the socio economic status (SES) of families who lobby for diagnosis.  Apparently, ASD diagnosis affords a quantitatively better deal for students within PDD or SEN in respect of services and in some cases, provides home family support.  In the UK, £2.7 billion is spent on Autism in children, every year (Knapp et al., 2009), chiefly due to education and medical costs, loss of income from families overstretched, housing and the projected loss from what may have been earned by employable adults.  (Bowler, citing Croen et al, 2000).  A high proportion of cost also fell to families in out-of-pocket expense, lost opportunities for employment and income in the form of time spent finding informal care (Croen, 2006).  A comparative study of healthcare utilization cost, between the families of neurotypicals and ASD children, revealed that annual costs of caring for children with Autism are 45% higher than for the care of neurotypical children.  Adding insult to injury, it is estimated that US working mothers of ASD children are paid 56% less than corresponding mothers of neurotypicals.  The current administration has made profound cuts to respite care in its Health and Social Care Act 2012.  Its passage may level differences between America and Britain.

It is clear that there are limited ways of dealing with this very dangerous and uncertain phenomenon due to a duplicity shaped by an expansion in diagnosis, if not the dawning of an actual epidemic, and a shrinkage of resources.  In the spirit of serenity and good practice it seems that the ASD experiant must be enabled somehow to self manage his/her care.  ‘Patient Empowerment’ is a relatively new method of enabling the ‘patient’ to be in control – whether through taking initiative, solving problems or making decisions which are applied to different settings in health and social care.  At the European Network on Patient Empowerment, Copenhagen, Denmark in May 2012 (The Lancet, 2012) it was established that the traditional paternalistic approach to patient care ignores the patient’s voice in stating personal preferences, and creates dependency.  The conference’s outcome revealed a desire for patient-centred care.  Its purpose was to share information and experiences on different aspects of patient empowerment, including health literacy, chronic disease, self management, and the role of technology.  Ultimately ENOPE, advocated patient involvement in designing national policies to make health systems more user friendly and information more accessible, and set out as an example the HIV/AIDS activists for their hard won, constructive patient-policy engagement.  Critics of this proposed power shift cite threats to the integrity of the medical profession, and possibilities that self reliance will abrogate governments’ responsibilities to fund the growing burden of disease as ‘baby boomers’ hit retirement en masse.  In the context of ASD, both of these threats are nearly obsolete.  Nevertheless issues which seemed particularly pertinent mentioned the difficulty in reaching the most vulnerable, in health literacy programmes and self-managed care promotion; the limited resources and consultation times of medical consultants and the fact that not all patients prefer to self-manage.  Robert Johnstone of the International Association of Patients Organisation chimed up in response, “…. doctors should get down off their pedestals, but patients must get up from their knees.  Empowerment is not about trying to wrest power from the doctors, it is essentially about helping people lead more proactive and fulfilling lives.” (The Lancet, 2012, p. 1677)  An important clarification was indicated by redefining empowerment as a community effort – that learning to self manage inspires (and is inspired by) integration into society and workforce.  Such programmes should support individuals to gain confidence and acquire skills which recognise warning signs, take medications properly and choose suitable treatment.  Large scale evaluation and international evidence based guidelines for self care are sorely lacking and urgently awaited.  Astrid Kaay, Danish Minister for Health, announced  at the opening ceremony that she is due to host an informal meeting of EU Health Ministers to discuss more patient-centred health systems.  The World Health Organization regional office for Europe has committed itself to patient empowerment in a new European Health policy, entitled Health 2020 to be adopted later this year.  Better health outcomes achieved with improving a person’s ability to understand and manage his/her health and disease, negotiate with different levels of health professionals and navigate complicated health systems.  Empowerment is a process for individuals and all those who might advocate for it – such as practitioners of Arts Development in Community Health.  “Virtually all people are patients at some point in their lives”. (The Lancet, 2012, p.1677)

Mike White, Senior Research Fellow in Arts in Health at the Centre for Medical Humanities and St. Chad’s College, Durham was introduced to Arts in Community Health in 1988 via Dr Malcolm Rigler of Brierly Hill, West Midlands who was keen to include arts practitioners in his work at his surgery there to establish a community focus. (White, 2009)  Rigler was inspired and influenced by his mentor, the Rev. Dr Michael Wilson, who understood that an individual’s health can only be achieved within a healthy community.  In attempting to redefine health as not just a private matter but a common good, Dr Rigler sought to inspire others to understand the fragility and complexity of their own bodies, beyond biology and simple health education, to find meaning and enchantment in self worth and devotion to neighbours as well as one’s place within that community. Arts practice seemed to equip his model with excitement and insight.  White’s collaboration with Dr Rigler and other arts practitioners became his first Arts in Community Health project, and in the flush of its simple but substantial success – increasing child immunisation in that region from 83% to 98% in 1988 – he was introduced to the retired Rev. Dr Wilson. At their meeting Wilson made an important distinction between two medical models.  The hierarchical ‘war’ model was aligned to crisis intervention, but the ‘peace’ model of health in community through arts practice would build capacity towards a ‘peace culture’ (2009, p.19).  Of particular interest to White in developing a proactive, patient-empowered Arts in Health practice was involving artists in health promotion – developing imaginative methods to inform and entertain awareness of societal ills such as stress, toxins, diet, allergies, drug and alcohol dependency, cancers, heart disorders, AIDS.  The ultimate goal was to motivate communities toward self-healthcare.  The co-creativity of collaboration in building or regenerating community is what defines a health community and its constituents. Though the arts may not cure disease, it “can remove unease” (White, 2009, pg 19) and might inform medical practice by peeling away emotional layers to distill what is the actual disorder.

To reach the core of the disorder, to understand the theoretical possibility of its physiological impairment, it is at least useful to understand and unpack from symptoms some aggravating factors.  Factors which have conspired to scapegoat a community, in the course of trying to control fears of the unfamiliar by psycho-biomedical professionals.  How much of ASD suffering is due to its stigmatization, how much of ASD experiants’ symptoms are self-protective measure?  To confront and denounce established meaning, which has demonised a group, requires emotional restructure.  Transcending circumstances demands a commitment to rebuilding and claiming a collective identity. Taking cue from ENOPE 2012, The AIDS Memorial Quilt as Cultural Resistance for Gay Communities (Krouse, 1994) might provide a shiny beacon to the ASD community for qualities that recommend it to patient empowerment through Arts Practice in Community Health.  The arts intervention workshops of the Quilt movement have historically inspired a sense of community and unleashed creative spirit and emotional release.  Krouse cites its power to transform the debilitating despair of isolation into a collective celebration of identity.  The power of this object – the quilt – to create a lasting manifestation of comfort and cohesion is indispensible.  Its transcendental impact from ritualised, collective arts practice is enabled by its tendency to blur distinctions between ‘self’ and ‘other’ when self identity is reconstructed collectively.  This transition is achieved through devotion to others in that group, to the whole community.  A ‘self’ sacrifice is enacted – that self created through pain of stigmatization perhaps – and the space is cleared for self reinvention.  In fact the intersubjectivity which reconstructs identity is impossible in isolation.  Another enabling factor of this endeavour is the trans-temporal dimension which allows participants to re-write, re-draw, re-sing themselves back into time and society through metaphor of integration.

The noted sameness which characterises resistance to change in ASD experiants might be detangled with a ritual described by Mike White, which relates the story of a community transformed from deprivation and dysfunctionality to healthy emotional development and social cohesion in 2003.  (White 2009) Based in Dewsbury Yorkshire, the Chickenley Primary School is educational host to inhabitants from a socioeconomically deprived ‘sink estate’ with a low record of academic achievement, high staff turnout and poor teacher commitment.  The new head teacher drafted in Arts Practitioner and theatre set designer, Mary Robson, and arranged funded by the Children’s Fund, partnered with Loca, an arts and regeneration agency.  The underpinning theme of the project emphasised the concept of curiosity as “the fuel of development” in creating a collective arts-in-residence or artroom at Chickenley.  (White, 2009, pg 192) The artroom established a base for a 12 week project by Year Six pupils.  Explorations of self through self-portraiture, sourcing examples from their own lives and art history for material and inspiration, led to a self-curated exhibition by the students and formation of their own carnival company.  They also created processional images for a parade of year-6 students and families to the secondary school where the students would attend the following year.  Upon arrival they presented a garland of wish-inscribed origami birds to the year-7 children and their head teacher who’d awaited them.  The Chickenley head teacher then asked the high school head teacher, “Will you please take care of our children?  They are talented and special individuals”. (White, 2009, p.193)  Rites of passage infusing artworks of deep meaning and resonance for these children have a transformative effect for participants and community.  A similar project for ASD experiants to help empower them for life change might prove invaluable.  The process of handover, whereby an official mentor / guide / headteacher petitions for the safe delivery of her precious, talented and valued students to the new guide and mentor and future community in secondary school is striking.  There must be other heroes to children who might galvanize an expansion on this model for the wider ASD community through the media.  Engineer and Autist, Dr Temple Grandin, who thinks in images, champions the concept of mentor teachers in schools and relates how a certain science teacher rescued her from abuse by her peers, whilst in school. (2007)  Author Carly Fleischmann, a non-verbal Autist would be an ideal mentor for ASD children.  Her book, Carly’s Voice:  Breaking Through Autism (2012) displays a wicked ‘intrapersonal’ intelligence.

The Flash of Splendour Arts’s project entitled ‘A Picture of Autism‘ (Avery, 2010) organised a breathtaking event at Mary Ogilvie Gallery, St Anne’s College, University of Oxford.  The experience gave ASD children a sense of achievement, which helped them reassess the value of their work, and the role of creativity itself, in the context of reaching a wider public, and stimulated them to perceive themselves as artists.  The paintings emerged from a multi-disciplinary approach, employing alternative forms of storytelling around objects and also employed musical intervention, in order to conceive of ideas, themes, imagery that might not otherwise be expressed.  One person who came to the private view remarked,  “Seeing the young artists darting between crowds, explaining their works to collectors, signing copies of the catalogue, beaming with pride at their first sales, chatting to dons about their imagery….there is so much talent, so many ideas, so much innovation in SEN schools and bases….. we just sometimes need to see the artist first not the disabled child” (Avery 2010).  Howard Gardner championed the artist as creator of ‘human symbolization‘. (Gardner, 1999)  He described artists’ skills as ‘fluent’ (1999, p29) and difficult to dissect because they were multi-sectoral and quite tightly woven.  He was also awestruck by victims of stroke and brain damage for the “counter-intuitive patterns of spared and lost capacities (still) managed to create, perform and critique at high levels.”  It highlit his understanding of multiple intelligences as representing the wide range of capacities available to any human being.  He also understood that a person’s strength in one area of performance does not indicate a strongpoint in another, recognising that a strength of intelligence is distributed in skewed fashion.  These ‘skewed strengths were more obvious after brain disease. (Gardner, 1999 p31).  His research paid close attention to how ‘accidents of nature’ revealed the identification and operation of a particular intelligence in sharp relief. (Gardner, 1999, p39)  ASD experiants, were a source of fascination for him as having no documented signs of brain damage, yet exhibiting an unusual profile of intelligence.  He lists them as outstanding at numerical calculation, musical performance, reproduction of melodies or drawing; but with distinctive impairments in communication, language and sensitivity to others.  An overarching theme to explain this complex construct is rooted in ‘Modularity’ theory, whereby, over the years the brain has evolved separate organs to process different kinds of information according to various stages of evolution.  He considered intelligences as neural potentials – activated by values, opportunities and personal decisions made by individuals, families, school teachers and others in the individual’s community.  The relatively independent avenues of the human intelligences prevent monolithic judgements of individuals as smart or stupid.  His discoveries deduced that the separation of language from other faculties meant a separate linguistic intelligence.  Distinctions within PDD and ASD are not necessary to provide quality education because there is a full range of intellectual levels within ASD (Scott et al, 2000 citing Rimland, 1978).  However deficits in communication and perceived ‘disinterest‘ bias the accuracy of standardised tests. (Scott et al, 2000, pg 9)  Thus diagnosis can be debilitative.  Test results influence education recommendations and decisions of professionals, whose perceptions of SEN students affect services and support arranged for the student; when placement and programme are decided on the basis of diagnosis, rather than actual student individuation.  The result restricts the ASD student’s life chances since “lack of opportunity to learn is as debilitating to students with Autism as the condition itself” (Scott et al, 2000, p.9).  It seems logical to concentrate on the strengths of intelligence for ASD students.  His/her most widely recognised strength is in visual processing, with more responsiveness to visual, over auditory, stimulus which means thinking in pictures and a sharp eye for details.  There is sometimes a correlation between this visual element and ‘savant‘ skills (Scott et al, 2000).  Other core strengths of the ASD experiant include self initiative, sometimes to a compulsive degree, and good rote memory.  It seems that creative cultivation of these skills could be developed to facilitate independence.  ASD students have potential to be quite technical, but are usually lacking in softer social skills.  To encourage the development of special skills amongst those with Autism is to encourage an imbalance for the sake of rewardable achievement (Cheatham, 1995).  However, Arts Practice applied to learning is much more integrated and cultivates intensive skills through collaborational situations, which inadvertently tightens up skills of communication and empathy.

In Zulu culture, the ‘sangoma’ is a spiritual intercessor, similar to the Arts in Community Health practitioner, who upholds the belief, through various rituals, that illness is not concentrated in one person deemed to be afflicted. (White, 2009, p.160)  Instead, illness refers to the misfortunes that befall an entire community.  The concept precedes and goes beyond Western culture in by recognising disturbances in an environment’s ‘pathology’.  Mike White cites its ethos as, not only a fascinating perspective on Community Health, but also a powerful way to negotiate the ills of consumerism in Western Society.  One need only reflect back to the summer of 2011, when the threat of a city on fire was once again brought to London by rioting youth, in order to truly grasp the concept of Mike White’s ‘Social Tonic‘ gone sour (White, 2009, p. 104-105).  The BBC (2011) reported that two-thirds of the young rioters who had landed in court were SEN children, with behavioural problems.  We are indeed all in this together.  Creative solutions are not just desirable, they are necessary for survival.

The voice of Autism is a cross sectoral construct which speaks from the script of families, teachers, health professionals and governments, including local authorities.  However the experiential voice of the person diagnosed within the spectrum is strangely silent or perhaps it speaks in mysterious ways.  It is considered a diagnosable disease, in spite of outstanding information about its physiological and genetic nature.  Resources are becoming more scarce and its diagnoses are becoming more widespread.  There is a sense of entropy regarding its treatment.  The acknowledgement of ASD, confusion it has elicited, reaction it has garnered requires a dynamic and creative cross-sectoral approach, in order to heal its experiants and the dominant forces which fear it.  Arts in Community Health practice is heir to a legacy of generating work which pulls together the disparate parts of human pain and suffering in order to fuel transformation, deeper understanding and more tightly woven relationships in simultaneity.  Some Autists have broken through the limbo imposed on them by schooling, ineffective testing and sabotaged futures.  Donna Williams is a shining example.  There are others such as her disciple, Temple Grandin, and author, Carly Fleischman.  Arts practitioners have enough signposts and breadcrumbs to creatively strategise ASD children and adults toward achieving the triumphs which are framed by Howard Gardner’s Multiple Intelligences discoveries. Strides toward such achievement are tempered by an encroaching social meltdown, if last Summer’s riots are any precedent to the uncertain future.

 

BIGLIOGRAPHY

American Psychiatric Association, 1994.  Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition (DSM-IV)

Avery, A.L., ‘A Picture of Autism’.  SEN Magazine, Issue 43, (September/October 2010)

‘Backstreet Dreams’ 1990. (Film) Robert Hitzig and Jason O’Malley, Vidmark Entertainment [ http://movies.nytimes.com/movie/review?res=9C0CE0D8173BF932A35753C1A966958260 ]

Baird, G., Charman, T, Baron-Cohen, S., Cox, A., Svetlendan, J., Wheelwright, S., Drew, A.  A Screening Instrument for Autism at Eighteen Months of Age:  A Six-year Follow-up Study.  Journal of the American Academy of Child and Adolescent Psychiatry 2000; 39:  694-702

BBC News UK, ‘England Rioters “Poorer, Younger, Less Educatred”’ <URL http://www.bbc.co.uk/news/uk-15426720 > [accessed 24 October 2011]

Carey, B., ‘New Definition of Autism will Exclude Man, Study Suggests’.  New York Times, (January 2012) [ http://www.nytimes.com/2012/01/20/health/research/new-autism-definition-would-exclude-many-study-suggests.html?pagewanted=all ]

Cheatham, S., Rucker, H.N., Smth, D.J., Lewis, W.G. ‘ Savant Syndrome:  Case Studies, Hypotheses and Implications for Special Education and Training.’  Mental Retardation and Development Disabilities, 30, pp. 243-253 (1995)

Conquergood, D., ‘Health Theatre in a Hmong Refugee Camp:  Performance, Communication and Culture’  MIT Press, Vol. 32, No. 3. (Autumn, 1988) pp.174-208

Croen, L., Najjar, D.V., Ray, T., Lotspeich, L., Bernal, P., ‘A Comparison of Health Care Utilization and Costs of Children with and without Autism Spectrum:  Disorders in a Large Group’, Pediatrics 118(4) :  e1203 – e1211

‘Family Pictures’, 1993. (TV) Philip Saville  [ http://www.ew.com/ew/article/0,,317355,00.html ]

Fleischmann, C., Fleischmann, A., 2012.  Carly’s Voice:  Breaking Through Autism.  Canada:  Simon & Schuster

Gardner, H., 1999.  Intelligence Reframed:  Multiple Intelligences for the Twenty-First Century.  New York, N.Y.:  Perseus Books Group

Health and Social Care Act 2012 c.7  London:  HMSO. [ http://www.legislation.gov.uk/ukpga/2012/7/enacted ]

‘House of Cards’, 1993 (Film) Kathy Li, Arrow Films [ http://www.imdb.com/title/tt0107148/plotsummary ]

Kanner, L., Autistic Disturbances of Affective Contact.  Nervous Child 2:217-50.  1943

Knapp, M., Romeo, R., Beecham, J. ‘The Economic Cost of Autism in the UK’ pps.317-336  The International Journal of Research and Practice, ‘Autism’, J. 13, No 3, (May 2009) National Autistic Society, UK:  Goldsmith College

Krouse, M.B., ‘The IDS Memorial Quilt as Cultural Resistance for Gay Communities’, Critical Sociology.  Sage Publications (1994)

The Lancet.  ‘Patient Empowerment – Who Empowers Who?’, The Lancet, V. 379, Issue 9827, p. 1677, 5 May 2012 [ http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(12)60699-0/fulltext?rss=yes ]

Moench, B., ‘ASD “Epidemic in Utah”:  Autism and Disappearing Bees:  A Common Denominator?’  Common Dreams (April 2012)  [ https://www.commondreams.org/view/2012/04/02 ]

Rogel-Ortiz, F., J., 2005.  ‘Autismo’ Gac. Med. Mex [online] vol. 141, n. 2 [ cited 2012-05-05] pp. 143-147.  Available through: < http://www.scielo.org.mx/scielo.php?script=sci_arttest&pid=50016-381320009&ing=en&nrm=iso > , ISSN 0016-3813

Scott, J., Clark, C., Brady, M.P., 2000.  Students with Autism – Characteristics and Instructional Programming, San Diego, California:  Singular Publishing Group

Severson, K., Aune, J.A., Jodlowski, D., 2008.  ‘Bruno Bettelheim, Autism and the Rhetoric of Scientific Authority’,  Autism and Representation. Ch.2  New York, N.Y.:  Routledge

Grandin, T., ‘My Experience with Autism’.  University of California Television, “M.I.N.D. Institute Lecture Series on Neurodevelopmental Disorders” [6/2007] [Health and Medicine] [Show ID: 12868]

Williams, D., 1996, Autism – An Inside-Out Approach:  An Innovative Look at the Mechanics of ‘Autism’ and its Developmental ‘Cousins’, London, UK: Jessica Kingsley Publishers Ltd

White, M., 2009.  Arts Development in Community Health: A Social Tonic.  Oxford, UK: Radcliffe Publishing Ltd.

 


One Response to “Autism, the Enigma: Transformation through Arts in Community Health”

  1. Autism, the Enigma: Transformation through Arts in Community … | Autistic Information on January 2, 2013 3:57 pm

    […] called 'Autism' was grouped within a spectrum of disorder. … Follow this link: Autism, the Enigma: Transformation through Arts in Community … ← Banoosh » » Debunking 7 Common Myths About […]

Trackback URI | Comments RSS

Leave a Reply

You must be logged in to post a comment.