Autism.doc

Autism: Didactic and Behavioural Approaches Meenakshie Verma Abstract: The essay is based on the observations of autistic children. It looks at the effective intervention techniques that enhance communication patterns among autistic children. Some of these techniques are expressive and creative. They come from diverse fields like, music, wonder tales, mathematics, sports, culinary skills etc. These skills can be added to the didactic structures and teaching methods meant to improve communications. Moreover, manifold and atypical ways of care, nurturance and companionship for autistic children ought to be explored further. Key words: Anthropology, Autism, Communication, Expressive Practices, Sociality, India Autism is basically a neuro-developmental medical condition. Autism spectrum disorder (ASD) and autism are both general terms for a group of complex disorders of brain development. These disorders are characterized, in varying degrees, by difficulties in social interaction, verbal and nonverbal communication and repetitive behaviors. They include autistic disorder, Rett syndrome, childhood disintegrative disorder, pervasive developmental disorder-not otherwise specified (PDD-NOS) and Asperger syndrome. ASD can be associated with intellectual disability, difficulties in motor coordination, attention and physical health issues such as sleep and gastrointestinal disturbances. However, it also generates various sociological and anthropological concerns to be explored. Since, it is about initial communication blockades that primarily affects immediate dyadic relations and kinsfolk. Gradually, it begins to show in lack of everyday reciprocal communications within the social world. The natural process of socialization of an autistic child gets hindered leading to various kinds of social, psychological and medical complexities. This condition is about inabilities in forming, maintaining familial and social bonds. Therefore, it seeks to redefine bonding, with parents, siblings, kinsfolk and rapport with the social world. This further leads towards reworking inner and social dynamics of family, childhood, sexuality, and personality. Thus, posing concerns and queries around conditions related to autism. Besides, exploring practical solutions for enduring conditions like- care, nurturance, self reliance and, companionship. Markers This essay is based on the observations made of the children (3-15 years) with autism condition. They were connected with institutions in the Delhi & NCR region. According, to a conservative estimate 10 million Indian children are likely to suffer from Autism. 1 in 66 children between ages 2 and 9 are affected in India. It goes unreported because of the various kinds of stigma attached to the mental health. Many parents take moral responsibility and blame themselves as bad parents. The whole idea is to generate awareness and open up various kinds of discussions around the subject. Also, a delay in therapy means loss of time and development of further complexities in the autism spectrum, Since, 80-90% of the human brain grows in early childhood therefore therapies work if the interventions have been made early. There were parents, teachers and therapists who guided me through the world of autistic children. It was an attempt to comprehend their cognitive patterns. Though, initially, it appeared a daunting task to motivate the children to express simple everyday chores that concerned them. If I recognized their patterns of cognition then, I could work upon improving modes of communications. The idea was to improve upon everyday and reciprocal communications. Enhanced communications could lead towards development of self-reliance and autonomy for them. “Silence, grimaces, flapping of hands, minimal eye contact and contortion of body are regular responses during the initial interactions”. Breaking into such silence is something neurosurgeons, clinical psychologists, parents, teachers and psychotherapists continue to do with patience and anticipation. Hence, I started with the premise suggested by a therapist, “One the vital aspects of communications is hearing what is un said. Silence speaks, one needs to pay closer attention”. Verbal transmission of ideas and thoughts are important. However, spoken words make up only a small part of communication. In everyday life majority of communication is non-verbal, In fact recently a research has shown that up to 93% of communication is nonverbal even among non autistic people. That is why it is important to pay close attention to actions as well as speech. So how do people communicate non-verbally? Non verbal communication is made up primarily of facial expressions, body language and digital media (Email, emoticons etc). Also, empathy plays an important role in understanding non verbal communications better. Sociality & Social World Symptoms of autism are identified in a child by the degrees in which they act upon sociality or reach out to the social world around them. The extent of severity varies considerably in each individual on the autism spectrum. The functional areas of communication, social interaction, and repetitive behaviour are viewed as the ‘core’ symptoms of autism. One child may not have the same symptoms. Also, may seem very different from another child with similar diagnosis. It is sometimes said that if you know one person with autism; you know one person with autism. The characteristics of autism typically last throughout a person’s lifetime. However, it can change considerably over time and through interventions. A mildly affected person might seem merely eccentric and lead a relatively average life. Severely affected persons might not be able to express through speech or care for themselves. Early and methodical intervention can make remarkable differences in a child’s development. It can also contribute to the child’s growth as an autonomous individual. In view of the fact, that each person with autism is unique. It has been noticed that many individuals on the autism spectrum have exceptional abilities in visual skills, music, mechanical, sports and academic abilities. They have been noted for average and above average cognitive abilities. Indeed, many individuals on the spectrum are perceptible for their distinctive abilities and atypical ways of perceiving the world. On the other hand, individuals with autism also have significant cognitive disabilities. They are unable to live as an autonomous person. Though, there are dozens of global instances of prodigal brilliance among autistic individuals. Nevertheless, the fact remains that autistic individuals are also marked out for cerebral, behavioural and cognitive difficulties. Additionally, autistic individuals with ASD can also be nonverbal. However, they can learn functional communication through regular instructive mediation. The human life cycle points out that, developing infants are primarily, social. Their sociality is displayed through several types of body language, cooing and babbling etc. They begin by gazing at people, turn toward voices, grasp a finger, cry and also smile. In contrast, children with autism have difficulties to engage in the reciprocal, give-and-take of everyday human interaction. Even in the first few months of life, many autistic babies interact occasionally and avoid eye contact. They seem indifferent to the social world around them. Also, solitude is unproblematic. They may resist attention or passively accept hugs and cuddling. That’s the turning point when parents, siblings and kinsfolk begin to seek interpretation of their unresponsive behaviour. Therapists advise them to carry on with persistent efforts to communicate with the staying power of empathy. Mostly, parents work with these two notions earnestly and ardently for several years. However, others, notably siblings and kinsfolk could also contribute towards continued nurturance of an autistic individual. It is a matter of sustained empathic concern. Anthropologist Hernandez through case studies in France has addressed few vital issues around siblingship and care of a dependent autistic sister or brother. Mylène Hernandez. (2017) <<La Germanité au prisme des trouble autistique>> Doctoral Thesis, EHESS She suggests, there is a vital need for law to intervene in a family with autistic child or children. Parents do take care, however, their non autistic siblings should be obliged to participate in care, nurturance and companionship. She further argues that being siblings is a lifelong situation. This situation can actually bring positive influence in the care of the autistic people. These are forms of moral obligations though, not mandatory. However, contradictions exist in the contemporary French society as, elsewhere around the world about such matters. Continuing research suggests that children with autism are attached to their parents and siblings. Though, their expression of fondness is often unusual and complex to figure out. Additionally, children with autism are slower in learning to interpret what others are thinking and feeling. Subtle social cues— a smile, a wink, a shrug, sarcasm, an innuendo, or a grimace—are grasped after several instances. Furthermore, these slight gestures may have little or no meaning for the autistic children. Without the ability to interpret gestures and facial expressions, the social world may seem indifferent to them. To compound the problem, people with autism have difficulties in comprehending another person’s perspective. This obscurity leaves them unable to see the point of other people’s behaviour. Although, not universal, it is common for people with autism to have difficulties in regulating their emotions. This can be displayed sporadically as behavioural precedents such as hurting oneself, verbal outbursts, damaging objects, gadgets etc. For, the untrained eyes such activities seem complicated and difficult to manage. Therefore, siblings, kinsfolk, peer group gradually begin to exclude themselves from protracted companionship and nurturance routines. Thereby, causing gaps in bonding which are complex to nourish and manage. Furthermore, the dynamics of parental care and support by siblings and kinsfolk is a matter of social awareness and an empathic reflection. Indian Backdrop Compared to the French society, Indian families with autistic children are differently endowed to manage the situation. This happens because the Indian law does not recognize autism (ASD) as a distinct form of life threatening disability. Though, advocacy movements in India have got Autism added along with Celebral Palsy, Mental Retardation and Multiple Disabilities Act of (1999, 2010 & 2016) www.autism-india.org.legislation-policies According to these policies an individual with autistic conditions can receive certain benefits from the government owned institutions and bodies. Hence, to get access to a majority of benefits, a disability certificate is required. Currently, disability certificate is not being issued for autistic individuals. Autism in India also needs to be viewed in the context of predisposition and general stance towards this category of disability. Traditionally there has been stigma attached to disability related to slow developmental process—shame, embarrassment, stigma, vague beliefs about inadequate parenting thrive. Though, similar perceptions are shared by various cultures and communities worldwide. It is noteworthy that, there is an idea of mortification and stigma attached to behavioural and cognitive disabilities. Such ideas ensure that families hide their children with atypical behaviour. Since, lots of autistic children are not socially visible. Therefore, they do not exist. It also means numerous autistic children do not surface for counseling and training opportunities. This acts as a barrier towards generating collective awareness about autism. Though, in recent years the stigma has lessened and there is a greater acceptance. Besides, currently the needs of autistic children in India are not being thoroughly met either in the regular or special education systems. There is a need to generate empathic comprehension with special didactic methods. With such an understanding parents, kinsfolk, teachers & therapists can contribute in significant ways to prepare autistic children for an active and factual social world. It is noteworthy that with timely and effective training an autistic child can function well in a regular school as well. Cognitive Rubrics Numerous interactions with the autistic children conveyed that one has to look into the autistic communication patterns through a prism emanating multiple hues and sparks. Apparently, several distinct types of synchronized cognitive processes take place in the human mind incessantly. These can be put under the rubrics of, linear, holistic, sequential, random, symbolic, concrete, logical, intuitive, verbal, nonverbal, reality based, and fantasy based cognition. It is not unusual for an autistic mind to process experiences, sensory information, feelings, visual & oral promptings linked logically to some of these categories, continually. It is also relevant that there is a meaningful motif of communications that can be drawn upon from the dominant types of cognitive processing. Some types might be common in all situations. Therapists, teachers and parents usually recommend few prototypes which seem to work against all kinds of odds. These models regulate and enhance autistic communications as diverse and functional. These outlines seem to merge with the prevailing cognitive categories. To make beginnings in rational interactions with the autistic individuals digital media and computing methods are called for aide. Augmentative & Alternative Communication (AAC) Augmentative and alternative communications (AAC) involve alternate methods of exchange of ideas. It addresses needs, feelings, ideas, initiatives and perceptions through the use of electronic and non-electronic devices. Such gadgets provide means for expressive and receptive interactions for persons with limited or no speech. These specific forms of technology-based AAC include, * Low- tech systems such as audio- video communication board, video books; the media used in the images exchange communication system. * Hi- tech systems include mobile and portable devices (including smart phones, tablets, lap top, desk top etc.) voice output communication aids (interactive toys, speech generating devices etc.) It has been noticed that autistic children form a consistent rapport with the computer and digital media generated images, messages, sounds, routines, schedules etc. On the precondition, if they are introduced early to the digital media. In the contemporary times digital media plays a vital role in the social life. Computers and artificial intelligence (AI) software have made sure that significant social, technological, economic, cultural and medical transformations coalesce, regularly for a lay person. Floreano, Dario & Caludio, Mattiussi (2008) Bio-Inspired Artificial Intelligence: Theories, Methods and Technologies. MIT Press: Cambridge & Massachusetts This combination gives rise to new forms of sociality. They construct society through digital networks managed by the artificial intelligence gadgets. Additionally, new communication systems speak an, universal digital language. It is both integrating and liberating for the masses, globally. That also accommodates requirements of autistic individuals. In the present context it is crucial to have closer looks at the communication principles of behaviour based robotics or, social robotics. Evidently, in the current every- day life, AI enabled interactive digital networks are growing exponentially. They are creating new forms and channels of communication, shaping life and being shaped by life at a parallel pace. Social changes are as dramatic as the technological and economic processes of transformation Manuel Castells (2010) The Rise of the Network Society. Wiley Blackwell Publications, Sussex:UK Prologue . So, the ideas related to the digital media and allied networks indicate a certain kind of preparedness for further observations and queries. Expressive & Creative Therapies Remarkably, therapists, teachers, parents and others employ various standard and atypical means to connect and relate with an autistic individual. It can range from art therapy, music, drama, narratives, puppets, dance movements, cartoons, games, picture narratives, pets & plants nurturance etc. Additionally, several such mediums also employ digital media, images, music. In the process they touch upon visible and hidden cognitive and creative processes in an individual. There have been instances of notable and positive response from autistic children to wonder tales and fairy tales. A striking advantage of narratives is that autistic children get attuned to asking questions like, Who, What, Where, When, Why, How many etc. Various narrative techniques add upon construction of sociality around them in manifold ways. Such queries are vital for development of self reliance. Noticeably, such processes assume motivating dynamics among children who also have siblings. Somehow, presence of siblings as a regular play mate provides a sense of steady, accessible and responsive audience to the autistic children. Significantly, some parents also involve pets to provide a sense of companionship to the autistic child. Wonder Tales & Fairy Tales Fairy tales are avidly consumed by children and also adults globally, cutting across cultures. Ali MM (2009) How Folk and Fairy Tales Aid Children’s Growth and Maturity: An Analysis of Their Need Fulfillment Imagery. Lewiston, NY: Edwin Mellen Press. JL (2001) Inventing the Child: Culture, Ideology, and the Story of Childhood. New York: Garland Science. However, fairy tales are not produced by children. Besides, routine consumption of such tales can also lead to fixed thought processes and particular cultural codes of belief. Tesar, Marek et al. (2016) Forever young : Childhoods, fairy tales and philosophy. Global Studies of Childhood. Vol 6(2) pp. 222-233 9 Cohen, Morton (1995) N. Lewis Carroll: A Biography. New York A.A. KnopfThomas, Donald S. (1999) Lewis Carroll: A Biography. New York: Barnes & Noble Books Nevertheless, tales and narratives are significant in diverse ways. It is also a matter of probing queries and further research. Since, video games and fairy tales are a considerable chunk of multi billion dollars entertainment industry operating, worldwide. Consequently, one has to work with fiction, narrative, tales and autistic children with prudence and foresight. Yet, another turf is trials with writing and doodling. These are forms of essential communication. Just like verbal and nonverbal communication responses made through a pen or on a computer screen. These are guided by a particular set of reasoning. Some children may learn to use tales and narratives through non verbal and symbolic, pictorial methods. There are several dynamics of symbolic communication with pictures or sign language. Many of those who do not speak often use transmission of thoughts and feelings in unusual ways. They seem unable to combine words into meaningful sentences. Some speak only single words, while others repeat the same phrase over and over. Some children with autism repeat what they hear, a condition called echolalia. Although, many non autistic children also go through a stage where they repeat what they hear. Therefore narratives, tales, rhymes, poems etc may be communicated through puppets, dolls, soft toys and pictorial images. Since, a story line and sequence of events form a link between different kinds of cognitive processes, simultaneously. Alice in Wonderland Charles Lutwidge Dodgson i.e, Lewis Carroll (1832- 1898) British author, mathematician and photographer was noted for his writings. Research suggests that during his school years he displayed some autistic symptoms. Significantly, his writings are an example of fables with a difference. These narratives have been enjoyed by the children and adults since, publication. Unlike most of the children’s books of the day, Alice in Wonderland and Through the Looking Glass did not attempt to convey obvious moral lessons. The written works by Lewis Carroll Alice’s Adventures in Wonderland (1856) Through the Looking Glass(1871) Jabberwocky(1855) The Hunting of the Snark (1876) The Walrus and the Carpenter(1889) Phantasmagoria(1869) Carroll’s tales did not contain what critics have tried to insist are there—hidden meaning relating to religion and politics. They are delightful adventure stories in which a four year old girl reacts to the “reality” of the adult world. Carroll’s characters Humpty Dumpty, The White Knight, Tweedledum and Tweedledee are quite famous and popular with children. Some of the famous quotes from his works are as, “I know who I WAS when I got up this morning, but I think I must have been changed several times since then. “I am not strange, weird, nor crazy, my reality is just different from yours”. “I am afraid I can’t explain myself, sir. Because, I am not myself you see’. Quotes from Alice in wonderland & Through the looking Glass. (1856, 1871) It is a common knowledge repository that characters from Lewis Carroll’s books were different from the regular fairy tale narratives. The dialogues, expressions, tonality of the characters in these tales are out of the ordinary. All the people, who live, interact, work, teach and play with the autistic children have to develop a keen sense of decoding. They need to interpret what is being said through the verbal and non verbal expressions, gestures and the body language. Initially it might be baffling to interpret-facial expressions, movements, speech and gestures. Then again, many a times their tone of voice fails to reflect their feelings. A high-pitched, sing-song, or flat, robot-like voice is common among autistic children. Some children with relatively good language skills speak like miniature adults. Some children only mildly affected may exhibit slight delays in language, or even seem to have gift of language and unusually large vocabularies. However, they have trouble in sustaining a logical conversation. Unless, they are taught improved ways to express themselves, children with autism communicate in diverse and stilted manners. However, gradually such expressions may assume coherent structure through proper guidance and assistance. Musical Allure Wolfgang Amadeus Mozart (1756-1791) was an Austrian composer. His contributions to the genre of classical compositions are uncontested and matchless even at present. There are few beguiling instances which suggest that he may have been an autistic man. Gutman, Robert W (1999) Mozart: A Cultural Biography. New York: Harcourt Brace Solomon, Maynard (1995) Mozart: A Life. New York: Harper Collins. He communicated beautifully with the social world through music. It is needless to get into details about the extent of power music has over living beings. Additionally, music is a basic and delightful part of everyday life for the masses. Bicknell, Jeanette (2007) “Explaining Strong Emotional Responses to Music, Sociality and Intimacy”. Journal of Consciousness Studies 14(12) 5-23 ___________(2009) Why Music Moves Us, New York : Palgrave Macmillan It is considered that pure and absolute music is the instrumental music. Without being diluted with the human voice. It is unique is its ability to create an emotional responses in people. Evidently, instrumental and vocal both kinds of music have captivating and calming effects on autistic individuals. It was pointed out by an aspiring saxophone musician and an autistic student… “there is a condensed magnificence of the seven letters that make the fundamental musical notes.” Interestingly, the western musical alphabets which are only seven in number create extraordinary billion plus musical pieces in multiple genres. All the tunes and symbols originate from the first seven letters A, B, C, D, E, F and G. Similarly, in the Indian music (Hindustani system) the basic notes are Sa, Re, Ga, Ma, Pa, Dha, Ni and Sa. These notes are eight in number yet, contribute to an enormous reservoir of Indian classical and contemporary music. Both these sets are compact thus, easy to arrange and memorize. It is also said that music is the language of emotions. There are empirical facts that autistic individuals respond emotionally to music. By this means opening up diverse channels of communications. Numerical Integrity Seemingly, people with difficulties in social communication are comfortable with numbers and mathematics. Experts have often wondered about this notable situation. British philosopher Bertrand Russell had expressed his sense of mathematical beauty in these words, “Mathematics, when rightly viewed possesses not only truth, but supreme beauty-a beauty cold and austere, like that of sculpture without any appeal to any part of our weaker nature, without the gorgeous trappings of painting or music, yet sublimely pure and capable of a stern perfection such as only the greatest art can show. The true spirit of delight, the exaltation, the sense of being more than man which is the touchstone of the highest excellence, is to be found in mathematics as surely as poetry.” Russell, Bertrand (1919) “The Study of Mathematics” Mysticism. Logic and other Essays. Orient Longman: London pp.60 Elaborating similar line of thoughts, it can be noted that there are established links between numerical abilities and a particular type of cognition. Albert Einstein (1879-1955) American born German physicist had displayed signs of Asperger syndrome during, his school and college years. Goldberg, Jake. (1996) Albert Einstein New York: Franklin Watt Goldenstern, Joyce. (1995)Albert Einstein: Physicist and Genius. Springfield, NJ: Enslow Publishers Mcpherson, Stephanie Sammartino. (1995) Ordinary Genius: The Story of Albert Einstein. Minneapolis Carilrhoda Books. He had remarkable competence with physics and mathematics. It is inane to add that his life is an outstanding example of sheer determination, support, care, guidance along with hard work. Mathematics is dear to millions. Since, it is neat, simple and constant evidence created by numbers. The elementary digits are only between the units 0-9. They can be arranged in multiple combinations and permutations to create confirmations of truth and validity. Moreover, such evidences of truth are concise and to the point. The simple elegance and reliability of numbers attracts children with communication challenges. Some autistic children have explained it as…“numbers and digits have faces and voices, they speak to us and laugh with us.” Besides, human communication is also noted for erratic, uncanny, inconsistent and capricious elements. Precisely, those factors in communication seem difficult to handle by the autistic individuals. Their preferred nodules of communication need to be consistent, reliable and regular. Repetitive Behaviour Numerous children on the autism spectrum usually appear physically normal. Furthermore, several have good muscle control. Certain odd repetitive motions may set them off from other children. Such behavioural patterns might be subtle, extreme and highly apparent. Numerous such children seem to do well in particular kinds of sports related activities. They might not display uneasiness or fatigue during strenuous sports practice sessions. They seem to groom up for sports as a forte.An additional skill can also be suggested for such autistic individuals. They can be steered towards developing aptitude for simple culinary skills. Catering is a skill that also adds to the idea of self reliance. In addition, flair for culinary skill seems to work realistically. This can be initiated for diverse kinds of groups with communication challenges. Faith & Conviction Anthropological research and ethnographic work with autistic individuals suggests that they connect agreeably with the non- bodied beings (The idea of God etc.). It applies to several types of religious and spiritual beliefs. Individuals who have elements of autism and religion both present in their lives tend to adjust better to the structures and disparity around them. Visuri, Ingela & Thomas J. Coleman III “ Autism, Religion and Imagination”, The Religious Studies Project (Podcast Transcript) 5th February, 2018- https//www.religiousstudiesproject.com/pocreligion-and-imagination/ In the Indian society religious, spiritual ideas and structures are normally introduced early by the family members, spiritual guide, teacher etc. Markedly, numerous such experiences with religion and spirituality are non- confessional in nature. Moreover, in some ways these exposures seem to contribute to development of a self- reliant, individual. Additionally, such discourses also add up to enhancement of communications. Conclusion This essay is a contribution to an ongoing collective, analytical effort underway from several horizons. It is aimed at understanding a world of empathy and obscure messages. Also, it intends to develop out of the ordinary communication patterns. These ideas have been put together on the basis of available evidence and exploratory theory. The suggestions made here insist that numerous domains, across several cultural and institutional contexts, should be taken into consideration. Such a conundrum requires a perspective as global as possible. PAGE \* MERGEFORMAT 1 Meenakshie Verma is an anthropologist. Her research areas are personality & culture, gender, ethnicity, technology and public health. She can be reached at meenakshie.verma @gmail.com