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The tragedy of Autism

Ratan Bhattacharjee |

“What would happen if the Autism gene was eliminated from the gene pool?” Dr Temple Grandin had once asked. He provided the answer as well ~ “You would have a bunch of people standing around in a cave , chatting and socialising and not getting anything done.”

Dr Grandin’s query was related to the Autistic spectrum disorder. Autism is an exceptional behavioural phenomenon that has had an impact on our cultural imagination. It has eluded conventional definition and treatment. Parents of children with autism interact with  psychologists and pharmaceutical giants who insist on treating the disorder from a biological or behavioural standpoint. It is incredible that people suffering from autism are unique in their vision of the world and it is not just a coincidence that the word ‘autistic’ is confused with ‘artistic’.

Children with autism seem to embody and magnify what is happening in the collective environment. Autistic people play the same role in society as do artists who .have the ability to bring into consciousness things that are in the unconscious of the collective culture. People with uncanny gifts of expressing the truth through creative activity ought not to be overlooked.

In dealing with autism one must remember that behaviour is a form of communication. If we can change the environment, then behaviour will also change. Those who deal with autism must know this through their experience in dealing with children with creative, funny, highly intelligent, aggressive, impulsive, non-social behavioural traits. In India we have a habit of compartmentalising everything into simplistic categories. Autism is rather conveniently diagnosed as physical and/or mental retardation and there is an attempt to diagnose the disability as a neurotypical or neurodivergent affliction. This is an attempt to skirt the basic problem. Stephen M Shore had once appropriately remarked: “If you have met one individual with autism, you’ve met one individual with autism.” Inside every person there is a strength and a tenacity to survive, but sometimes when a child is affected with autism he may not know it. Our prime social duty is to provide these autistic children the correct kind of assistance.

Autistic children are quite unexpectedly found to be artistic. They reveal a capacity for profound expression that reveals an intimate and unimpeded relationship with their creative source. This takes varied forms such as writing, visual imagery, acting and logical reasoning.

Dr Colin Zimbleman received his doctorate in Clinical Psychology from Pacifica Graduate Institute in California. He is now working now as a therapist for STAR Autism in Ventura, California. From his experience of working for autistic children he realised the gravity of the ailment and correctly described it, saying “Autism offers a chance for us to glimpse an awe-filled vision of the world that might otherwise pass us by.”

In 1996, the AFA website was launched, indeed the first of its kind in India. In 1996, a delegation of parents of autistic children from across the country met the Secretary of Welfare for inclusion of autism in the Persons with Disabilities Bill. It is a salutary development that this was recognised in 2011. In 1998 AFA produced the first awareness film on autism in India. More than 20 organisations now cater to the needs of children and adults on the autism spectrum across India. These organisations use various methods to bring about a behavioural change and are doing impressive work in this field. These devices range from speech therapy to music therapy.

‘Action for Autism’ in Delhi was started by a former journalist, Merry Barua, whose son also suffering from a typical mental disorder. ‘Catch’ in Bhubaneswar is doing a splendid job by connecting with families of autistic children and adults. They allow parents of autistic children to share their experiences and inspire autistic children to learn various life skills for securing a better future. ‘Communication Deal’ is located in several parts of the country. The team works for three hours a day, five days a week helping to bridge the gaps in development.

‘Adarsh Charitable Trust’ in Cochin works with autistic kids and focuses on early intervention and aims at improving communication, cognitive skills, social skills and also to enhance the attention span of kids. Through music therapy, play therapy, special education, hydrotherapy and many other types of training, ‘SNM Rehabilitation Centre’ in Jaipur is the first rehabilitation and research centre for autistic individuals providing holistic services under one roof. It is a sensory integration clinic that combines an early intervention centre, a diagnostic centre, a research cell and an outreach cell. Ummed of Mumbai goes beyond diagnosing ASD to focus on other developmental disorders.

Bengaluru excels in providing support to autistic children. ‘Sampoorna Music Therapy Centre’ uses music as a tool to work with such handicapped kids. ‘Academy for Severe Handicaps and Autism (ASHA)’ aims at creating a world-class learning environment for people with ASD. There are many other organisations in Chennai, Allahabad, Ludhiana, Assam, Patna, Aurangabad, Pune and elsewhere doing exceptional work.

Young people with severe autism are languishing in hospitals. They shout, bang their heads on walls and are then are admitted to hospitals, where they lead a lonely life. But what they really need is not treatment but care which society is yet to realise. The numbers of those affected by or born with autism is increasing. But society has little or no provision to look after them.

All non-government and semi-government associations involved in the treatment of children, affected by autism, should be more inter-connected. The disability calls for greater coordination, indeed an umbrella project for effective results. Specialised facilities are rare in hospitals and those with autism have very few to look after them. Regretfully, family members do not have a proper understand ing of how to deal with autistic children at home and teachers feel unnerved in school. They need specialised care but not through segregation or isolation. Loneliness is a curse and it intensifies the anguish of autistic children.

Autism is often confused as a physical or mental challenge. In point of fact, it is neither a physical nor mental affliction. It is a special form of behavioural disorder. Care needs to be provided in community settings, which is a very difficult proposition.

The hospital is a wrong place for the autistic children or adolescents. People with acute autism cannot go beyond the mental age of a child and long-term care which is needed is not available or always possible. To cure autism, socialisation skills are imperative. Child specialists in hospitals need special training to deal with autism and psychiatric units must have a special service package for autistic children.

Elaine Hall had rightly stated: “It takes a village to raise a child. It takes a child with autism to raise the consciousness of the village.”