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Different and proud of it!

Wednesday, 2 April 2014 - 6:05am IST | Place: Mumbai | Agency: dna

  • Sudharak Olwe dna

Autism is not a 'disease' or 'defect'; rather, it is an example of the diversity of the human species which must be valued and respected. Let us revisit our understandings of "ability" and "disability" and foster a climate of acceptance and inclusiveness. A child who solves complex mathematical conundrums in the twinkling of an eye is unable to buy a loaf of bread from the store. The "walking encyclopedia" with a fascination for dinosaurs and space travel finds it difficult to engage in simple conversation. The prodigious artist, who paints with jaw-dropping intensity and power, shies away from meeting admirers who have come to view her work.Welcome to the world of "Autism Spectrum Disorder", a condition that affects a person's faculties of language, social communication and imagination. Autism is a lifelong "neuro-developmental" condition that usually manifests in the first three years of a child's life. As yet, its causes are not fully known, and a "cure" is, therefore, elusive.

What is well established though is that early diagnosis and intervention and an accepting and supporting environment make a world of difference in helping persons with autism and their families negotiate this complex and much-misunderstood condition.Once thought to be a rare phenomenon and virtually unknown in India, autism is fast becoming a recognisable category largely due to the explosion of information with the 'Internet revolution' and the efforts of dedicated NGOs and parent groups that have succeeded in putting it on India's disability map. With the number of cases being diagnosed world wide showing a dramatic increase, autism has emerged as a major public health issue in countries like USA, where a ten-fold increase in autism prevalence has been reported in the last 40 years.

In India, figures ranging from 2 million to 8 million are quoted, although there is a dearth of epidemiological studies that can give us an accurate assessment of its prevalence. Autism is a "spectrum" disorder ranging from mildly affected individuals who may merely be regarded as eccentric or peculiar, to those with very severe and debilitating difficulties who may require intensive support and care all through their lives. But what all persons "on the spectrum" share in common is a fundamental difficulty in engaging with the social world.Anyone who has seen a typically developing toddler will be struck at the overwhelming sociality that children seem to acquire so naturally; they will run up to mom and point excitedly at the ice-cream cart passing by, play pretend games in which they imitate the actions of adults and switch roles with effortless ease. Children with autism, however, display a social 'disconnectedness' that becomes strikingly apparent when they are compared with their 'typically developing' peers; many of them speak late or not at all; those who are 'verbal' tend to use language in unusual ways.

The worries of parents about their child's developmental patterns are frequently dismissed by family, friends and even doctors who advise them to "send the child to playschool so she can mix with others" or "spend more time with the child in a family-like atmosphere" or that "boys always talk late".However, once it becomes apparent that there is something noticeably "different" about the child, the hunt for a diagnosis and possible 'cure' begins. A few children are lucky enough to receive an early and accurate diagnosis; the majority remains either undiagnosed or misdiagnosed as "mentally retarded" or "mentally ill".Persons with autism may display unusual behaviour like spinning, rocking, hand-flapping, finger-flicking and express their frustration and distress through self-injurious ways. This can be profoundly unnerving and unsettling to those who come in contact with them, leading to stigma, shame and exclusion from the "normal" activities of social living. They may be labelled disruptive or unteachable and schools both regular and special may be unwilling to admit them, further intensifying their isolation.

The stigma carries over to the entire family, particularly the mother who bears the brunt of the blame for the 'unacceptable' behaviour of the child. Lack of access to education and training results in lack of employment and economic independence, adding to family burden.Is autism then just an aggregate of difficulties and deficits? Far from it. Research shows that persons with autism may also have certain unique talents and skills associated with their neurological differences. People with autism are known to have good visual and spatial skills, good rote memory, an eye for detail and the ability to concentrate for long periods on the things that really interest them. As we have seen earlier, some of them excel in areas like mathematics, art, music and computers. If these talents are appropriately harnessed, they can benefit both the individual and society. Thorkil Sonne from Denmark, the father of an autistic son, realised that the abilities of persons with autism could be optimally utilized in software checking and quality controls.

His company 'Specialisterne' which employs persons on the spectrum is a great example of converting adversity into opportunity and empowering persons with autism to lead productive lives. The Internet and communication technologies have been a great source of empowerment for the autism community worldwide enabling them to overcome their difficulties with inter-personal communication and 'find their voices' online. The 'Neuro-diversity' movement is one such example of the online autism community advocating for themselves. They assert that autism is not a 'disease' or 'defect' to be cured and eradicated; rather,it is an example of the diversity of the human species which must be valued and respected.Jim Sinclair, a well known autistic self advocate, in his 1993 speech Don't Mourn For Us urged parents to accept their child's autism as a part and parcel of who their child really is, rather than mourning for the non-autistic child that never existed!

The jaunty slogan "Different and Proud Of It!" used by the pioneering Delhi based organization Action For Autism reflects this spirit. In solidarity with the community of autistic persons and their families, the United Nations designated April 2 as "World Autism Awareness Day". Across the world, awareness raising activities will be underway and many important public buildings will "light up blue" to commemorate the occasion.On this day, let us revisit our understandings of "ability" and "disability" and foster a climate of acceptance and inclusiveness. Vive la Difference!

The author is Assistant Professor at the School of Interdisciplinary and Transdisciplinary Studies,Indira Gandhi National Open University, New Delhi

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