Autism or autistic disorder is a neurodevelopmental disorder that impairs a person’s ability to communicate, interact socially with others, and respond to certain stimuli in their surroundings. Autistic people have a peculiar perception of the world and interact distinctly with society. This can be considered a disability in a world with extreme social values and expectations and lead autistic individuals to experience a number of stressors in their daily routine.
Autism in the Arab world
When it comes to making a diagnosis of autism, the Arab World doesn’t fare well compared to western countries. Although one of the world’s most common disorders, ASD is less likely to be diagnosed in Arab communities as many Middle Eastern families lack awareness to identify symptoms and seek diagnostic clarification and treatment. There is a distinct absence of reliable numbers on diagnosis in the Middle East for autistic disorders, partially due to the lack of clinics and qualified medical personnel to diagnose them and also diagnosis of autism doesn’t include comprehensive behavioural / psychological considerations to form a full picture about the disorder.
Epidemiological research into autism in the GCC is relatively new and public awareness is disproportionally limited compared to western world. Studies of autism frequency have been particularly rare in the Middle East and these indicate that Iran, Qatar, and United Arab Emirates have the highest all-ages rates of ASD in the region. Nevertheless, higher reported prevalence rates in these countries may reflect improved diagnosis and it does not necessarily prove higher percentage of ASD in them, but could simply indicate that their populations have better access to healthcare facilities. However, even in the more developed Arab countries the diagnostic or intervention system for people with autism and high-functioning autism (HFA) is limited and features extreme inequalities. Conflicting studies and absence of specialty in the field reveal that the prevalence in the Middle East is still unknown, largely due to inadequacy of diagnoses, lack of societal acceptance and prejudice.
Gender inequality and autism
The male to female ratio in GCC countries is consistent with studies from the rest of world showing male predilection. However, research suggests that women are more likely to be overlooked and misdiagnosed not only due to lack of diagnostic resources but also social barriers. Culture in Middle East is a contributing factor, as some families tend to pay more attention to the development of male children compared with females. Possible reasons to explain this difference could be the female autism phenotype which is presented with less overt restricted interests, females’ tendency to mask their autistic deficits through a process known as “camouflaging” and professionals who play a role in diagnosis (family physicians, teachers, paediatricians, psychologists, psychiatrists, etc.) assuming ASD as a male disorder.
Arab culture and disability
Disability is part of the shared human experience but it is shaped by specific material and social conditions. Popular, academic and organizational reports on disability in the Middle East often refer to a shared set of terms when describing attitudes, practices, and beliefs (frequently glossed as “culture”) regarding disabled persons. These include shame, embarrassment, fear and hiding, hindering dialogue about ableism and promoting disability stigma. Influence of cultural and religious aspects on the perception of the disorder strengthen taboos of autism present in Arab culture. Disclosure of information is restricted by social and cultural factors involving privacy and reputation. Families avoid consulting general practitioners for early diagnosis of ASD for such reasons and as a result autism is under-diagnosed and over-looked.
While high rates of childhood autism are seen in the Middle East, access to diagnosis and treatment is limited or non-existent. The discrepancy in healthcare availability and approaches among different countries of the region is another factor that negatively affects the issue. Services are lacking in many more affluent Middle Eastern countries as well, where healthcare facilities are inaccessible for lower incomes. There are also very long wait lists for treatment and price assessments are considerably expensive.
Societal instability and autism
Autism is one of many mental disorders that can be affected by living in a volatile environment – which is the case in much of the Middle East. Political instability and inequality particularly pertinent in numerous parts of the Arab world, renders persons with disabilities especially vulnerable, suffering from heightened psychological distress. ASD is an important cause of disability and affected people face the difficulties of becoming excluded from social groups and prejudices, as absence of awareness makes difficult for new ideas to be adopted according to the Middle Eastern cultural and societal systems.
We perceive the world in ways uniquely different for each one of us. Perceptive complexities become particularly important for neurodivergent individuals with heightened sensory differences and it might even mean in the words of Temple Grandin, living in an ‘alternate sensory reality’. Treating experience as an ongoing interaction with our surroundings, installation explores how sensory identity can be expressed, induced and investigated in line with the neurodiversity paradigm, referring to Maurice Merleau-Ponty’s work shedding light on the link among perception and intersubjectivity. Examining the criticality of sensory dimension in social encounters, project questions how such process mediates the ability to connect to the world and to each other, while revealing mental pressures and challenges autistic people face in the Arab world.
People that belong in the autistic spectrum can get obsessively fixated with certain routines and patterns, presenting hypersensitivity to sensory input such as light and sound. Akin to stereotyped patterns of behaviour, repetitive formations clashing and intersecting explore gaps in communication and perception as well as the difficulty autistic individuals face in making sense of abstract concepts. Questioning the belief that persons with high-functioning autism are fascinated by a world of objects instead of people, being generally amazed by patterned conceptions such as shapes and systems, artwork expresses affinity to interacting with machines and mechanical instruments. A reference to aniconism in Islamic art, the mechanical intersects with the human and reinterprets the organic to manufactured. Analogous to Islamic art geometries, glitches in perception develop motifs allow videos to expand into a multi-dimensional experiential installation, incorporating Arabic drone music frequencies and their effects, such as hypersensitivity to sound and subjective perception of sound patterns.
Connecting biorhythms and visual art, the pulse of human body becomes melody orchestrated through vibrations in digital space. Informed by personal background, project references overlapping motifs of Islamic geometries simulating natural patterns found in algorithmic plant development and while being explorative of the non-figural takes the role of aesthetic meditation. Recalling traditional techniques with contemporary perspective, work refers to the endless of geometry through a deep engagement with geometric principles of Islamic art, as well as dematerialization embodied in their anti-naturalistic characteristics.
People confront an installation of 8 videos with sound, illustrating how patterns occupy space. The continuous loop of transmogrified patterns is digitally manipulated by interacting with artist’s breath, heartbeat and neural activity, which act as minimal gestures to bring artwork to life disclosing the physical association among stimuli. Monitoring originator’s respiratory values, heart rate, cardiovascular pulses and brain activity, the data extracted from medical equipment are converted to spectrograms producing distortions and glitches in digital motifs. Cognitive functions, interbrain neural relations, nerve signals and electricity produced by body reciprocate to digital data through an algorithmic process. Mechanisms depending on human element aspire to bridge human factor with time and movement, translating them to dynamic energy visually communicated, revealing the precarious connection between real and digital space.
Converted to electrical signals that interact with Arabic drone music frequencies, geometries expanding and contracting infinitely on a continuum generate an Arabic carpet of interconnected and intersecting elements, evolving and collapsing to themselves. Sound design is inspired by ‘Taqsim’ – a form of solo musical improvisation usually preceding performance of traditional Arabic, Greek and Middle Eastern musical composition. In ‘Taqsim’ the performer becomes interpreter of music following musical measure and individual rhythm not necessarily understood by everyone. An attitude of disobedience to the rhythm, improvising according to a complex set of preestablished rules and conventions, instrumentalist’s modulations (‘maqam’) communicate personal perspective of the predefined. Suggestive of specific emotions, in Arabic culture it is believed that each ‘maqam’ is capable of evoking a different feeling in the listener.Switching from one ‘maqam’ to another, installation superimposes such sound patterns insinuating the emotional complexity neurodivergent people have to deal with in their daily routine.
Further associations to ‘Rorschach test’ come to reveal emotional function as a force of distortion, hinting on the identity distortion created by neurodiversity. By activating our innate tendency to distinguish imagery in motifs and since visual perception differs from person to person, work examines the power of subjective interpretation akin to autistic perception, cognitive functions and mental balance. Transforming indefinitely, interlaced motifs of moving tapestries allude to the immeasurable, forming the link to the spiritual and mental realm.
Considering aniconism in Islamic culture as the predecessor of algorithmic design, the mechanical intersects with the natural as these digital arabesques become screens to the world of the infinite. Documenting incidental emergences while encountering rhythmic ornamentations, intimate pulse structures Metaspace as extension of corporeal body. A manifestation of fundamental human activity, the involuntarily performed functions visualise the organic relation between individual and the cosmos, illustrating the kaleidoscope of life in the radiance of photons, strings and tessellations. Heartbeat and breath, the most familiar elements linking every person form strange intersections as technology simulates actual life.
Suggestive of the neurotypical discrimination against the unfamiliar, I collaborated with scientists, healthcare specialists in the field of neuropsychology and ASD behavioural therapists. Project comments on ways artworks are nodes in the ongoing activity of knowledge production, underlining the experimental nature of art and science as spheres of discovering and understanding. Trying to respond meaningfully to broad range of cultural, philosophical and intellectual approaches present in contemporary society, this is an effort to increase public awareness about autism in GCC countries while challenging wider perception of disability in Middle East and Islamic society.
People confront an installation of 8 videos with sound (4K resolution with Dual Stereo sound) in a continuous loop.
Installation comprises of 8 tv monitors, 29 inches each with aspect ratio16:9.
Screens are placed horizontally next to each other without spacing between them.
Screens are fixed on wall at a height of 1.2 m from floor.
Software required for presentation:
Video player for digital files (MP4)
Hardware required for presentation:
8 LED Screens
Digital design interacting with artist’s respiration activity
Nerve signals converted to digital patterns
Synaptic signals reacting to drone music
Digital arabesque interacting with artist’s breath and heartbeat
Synaptic signals responding to drone music
Electroencephalogram converted to digital tapestry
Neuroactivity converted to digital mashrabiya
Digital arabesque interacting with artist’s respiration activity
Software used for project:
Izotope VocalSynth 2
Hardware used for project:
AURORA 12S ECG monitor
Bistos BT-740 breathing monitor
SAGA 32+/64+ Data Recorder
Artist: Niko Kapa
Medical & Scientific Advisors: Dr Mansour Ibrahim, Dr. Zuma Lajami
Music: Rahman Rezaei, Muhammad Hamidi
Sound Editing: Amer Farouq
Graphics / Digital Design: Johan Leitz
Those of you who have found the one
and have a hand to grasp you tenderly,
a shoulder to rest your bitterness,
a body to shelter your heat,
did you blush from so much happiness,
Did you think to keep a moment of silence
for the desperate?
“A moment of silence” by Dinos Christianopoulos
Compassion literally means “to suffer together”. In Alejandro Amenábar’s ‘The Others’, Grace believes that she lives in a haunted house to realise she is actually the ghost haunting the life of others. How close are we to each other? How do we measure ourselves compared to them? What happens behind walls? Examining life as competition of contentment, work offers a peek of what is on the other side of the fence. A portal to the unseen. What makes us humans? Others.
Vibrations fill my flat, created by my neighbours’ daily routine and activity in domestic environment. These occupy my empty home converting it to a percussion instrument, as noise is filling the void and life of others replaces own life. Forced to take part in other people’s lives as an observer and live through the life of others, I use my phone to produce spontaneous recordings of noises inside my apartment. Translating memory of space and feeling in visual form while allowing the transformation of the lived space into an aesthetic one, work is composed of 2 plasterboard panels behind of which loudspeakers are installed. Recordings of the flat’s vibrations and my heartbeat are played side by side to separate subwoofer speakers incorporated beyond them. Sounds and quiver are absorbed by the surfaces, interfering with one another, blurring distinction between in and out, questioning the limits of privacy. Who is the intruder? Who is the other?
Dismantling space, installation stands indicative of a place being out of place, descriptive of the relation among our bodies and constructed space surrounding them. Elemental forms compose an abstracted image of the original with attention being focused on the surfaces’ physicality and bluntness. The industrial raw matter, the component of wall and ceiling is removed from its normal context acquiring abstract qualities, as the flat surface becomes a tangible object in space generating a spatial experience with emotional undertones. Elements of architectural space generate an acutely reflective model of intimate domain and the complicated relations taking place in it, revealing physical correlation with the space around us.
The tension betwixt visible and concealed, external and internal encourages the viewer to feel presence of ‘others’ in work. Migrating to abstraction through a conveyed physicality, a new set of values arises drawing from the emotional connection among place and its occupants. Duality comes to visually illustrate the overwhelming emotions associated with segregation and absence of intimate contact. experiencing strong feelings of estrangement during a period of limited social interaction. Describing individual experience of social isolation, the manifestation of personal instability becomes confrontational of the continual stress created by being increasingly separated from human contact.
Desolate and bleak, plasterboards without their supporting system become extremely fragile conveying inanity while dealing with the physical problem of support and balance. Plaster, a material akin to sculpture and relief here underscores the abandonment of representational forms, capturing incidents of the quotidian without depicting them. Clean, raw, and untouched, the physical nature of industrial medium suggests construction processes, swinging between notions of erecting or dismantling the work. Spatial exploration is materialised without the depiction of volume as compressed space collapses to flatness, deconstructing the space shrinking around the artist contained within a claustrophobic environment.
Absence has a presence. Documenting everyday life of domestic space, acts are extended to an imaginary sphere reducing the distance among reality and fiction, life and art. Reflecting the notion of a higher reality beyond the mundane of habitual, disturbing pulses are transferred on the flat surfaces which quiver recreating the resonance pushing the walls and ceilings inside. Occupying the spaces between the walls, ‘ghosts’ inhabit them as internal and external vibe collide portraying the complex relationship between me and the others. Placed with a gap among them, division reflects dual personality while beating wall panels shape a pulsating configuration, investigating closeness against detachment and what it means to live with others without living with them. Stressing physical distance alluding to disjoinment, delineating the feeling of not belonging anywhere, the two boards appear to be in a forced dialogue with each other. Partitions made to divide space, constituents of containment destined to curtail the physical movement suggest notions of segregation as installation relates intimately to personal life through reference of own surroundings and concept of place.
Examining how we occupy and use space while trying to evoke a sense of place as affected from human presence, piece stands as a device provoking feelings of entrapment and anxiety. The plain background hints on inaction and isolation linked to a period of emphasised introspection, a state of ultimate inwardness where all emotions merge demonstrating inner turmoil. Life becomes the decisive factor enabling ‘haunted’ wall boards to vibrate and tremble, modulating the field of raw canvas while intensifying their threatening character. The façade of inertia forms a barrier interfering between the artist and audience, obscuring easy visual access and hindering penetration. Balancing along movement and stillness through their confrontational scale the planes obtain a bodily appearance, stressing the immediate physicality of object as it is transformed into a work of art.
Emphasising two-dimensionality, behind their deceiving similarity they conceal opposites in the reverse side. Seeing the creator in the work without seeing: the anonymous occupant, the uninvited guest, people living on the other side. Strengthening artwork’s role as mechanism of confusion, project suggests how mental illness can disturb the common-sense resulting to unbearable disruptions in daily routine. Projecting self on the work to dig into the collision between me and them, the 2 panels bring out contrasting modes of emotion and states of awareness. Putting the artist in the artwork while placing the subject behind it, the trapped energy is released by viewer’s reaction in order to trigger and excite emotional associations. Interested in the idea of simultaneity and relativity, duplication captures the strain oscillating between opposites and internal tension developed among them. Facilitating a visual struggle in the dichotomy of confrontations, instability comes to reveal ambiguous emotions expressing repugnance and desire while developing on the ways oneself is compared to others.
With heartbeat keeping the pace, the concept of time is highlighted in the artefact’s trembling surface triggering associations between inside and outside, private and public. Space in the body is occupied by the beating of the heart, a mechanical process on which we have no control and can’t be regulated. Correlating with space out of body, the unintended patterns of noise triggered by others generate the paradoxical blend inhabiting the conformation as sound becomes a structural element of the composition’s stark appearance. Intersecting with ‘white noise’, sounds compete along one another being dominant and inaccessible so as to express inner reality, suggestive of the difficulty neurodivergent people face in forming connections with others. Subjected to emotional forces, the surface pulsating becomes a living thing as repetition is comparable to stereotyped behaviour as a result of confinement in a habitat of reduced stimulation. An effort to manage the sensory environment by extracting interest from the mundane, configuration alludes to self-stimulatory activity (“stimming”) associated with autistic behaviour.
Letting others do the work, the invisible housemates behind the walls and above the ceiling structure a schismatic conflict, weaving together concepts of privacy and disclosure. Wondering how to cope with them and protect myself from their invasion, strangers become familiar as personal space is inhabited by them. Life experienced though others. Compassion, concern, tolerance. A moment of silence for the desperate.