MERRY BARUA

India,

Merry Barua is creating a comprehensive set of services on the Indian subcontinent that improve the quality of life for autistic children and the people in their lives, while making known the need for public and governmental recognition of this communication disorder.

This profile below was prepared when Merry Barua was elected to the Ashoka Fellowship in 1998.

INTRODUCTION

Merry Barua is creating a comprehensive set of services on the Indian subcontinent that improve the quality of life for autistic children and the people in their lives, while making known the need for public and governmental recognition of this communication disorder.




THE NEW IDEA

Although autism affects more people than Down's Syndrome, the disability remains misdiagnosed by the medical community, misunderstood by autists' parents, unrecognized by the Indian government, and unknown by the general public. Through the provision of nearly a dozen services, Merry Barua is attacking all of these problems and creating opportunities for autistic children that have never before existed in India or its neighboring countries.

Merry explains, "The autistic need specialized methods of training in communication and socializing skills rather than drugs and psychotherapy - the patent, ready prescription rendered to the autistic in disability institutions." From personal experience, she knows that parents of autistic children are their most important care providers and need a wide array of resources and support systems. She has therefore focused on their needs, and she demonstrates sustainability and potential for long-term impact by training them how to educate their own autistic children. In the process, Merry aims to break the monopoly of information and expertise that rests with the disability institutions abroad and develop a new generation of parent autism specialists who will establish ancillary units for autists in different parts of the country.

However, even with access to the best resources and information, people with autism will never achieve their full potential without legislative support, which in turn requires firm lobbying from informed citizens and an insistent medical community. Hence, Merry's organization is putting pressure on the Indian government to acknowledge autism as a disability and provide funding for autists.




THE PROBLEM

Autism is a brain disorder that causes a lifelong development disability, primarily affecting the communication and social abilities of people. Due to sensory defensiveness, people with autism perceive the world differently and therefore communicate and react differently. Therefore, being in the "other people's world" can be stressful for the autistic, who may feel pain at any physical contact and recoil from even a gentle touch. This characteristic of the disorder is particularly traumatic for parents, who often respond either by denying any problems or thinking they caused them. Researchers believe that a variety of factors cause autism, including biochemical, hereditary, and structural differences in the brain.

According to information compiled by Merry's organization, autism affects one of every 500 people, or about 1.7 million in India. India's medical professionals display a tremendous lack of awareness and understanding about autism. They misdiagnose or underdiagnose the condition, sometimes telling parents that their children will outgrow it (when in truth early intervention is critical), or, conversely, imparting an overly pessimistic view of the child's future. The majority of autistic children - especially the rural poor - remain undiagnosed and receive no services. Furthermore, as the literature compiled by Merry's organization explains, "Despite the number of autistic Indians, the government does not recognize it as a disability. Without recognition, schools catering solely to people with autism cannot receive government funding, [and] the needs of autistic children in India are not being met in either the regular or special education systems. Autists are ineligible for concessions and benefits offered by the government unless they are diagnosed as mentally retarded, yet many persons with autism are not mentally retarded." Without official governmental recognition of autism and the ensuing funding that all those working with disabilities receive under the National Disability Act, this situation is unlikely to change. In Merry's words, "We want to turn around the general perspective that autism is born out of psychological causes. It is a separate category within disability, and the Subcontinent's awareness of it is at least 50 years behind how the rest of the world perceives the disorder.".




THE STRATEGY

Recognizing that each of these problems exacerbates the others, Merry has started an organization called Action for Autism (AFA), an organization that incorporates initiatives that mutually strengthen each other and contribute to a hopeful future for autistic children and their families.

To provide the combination of a good school and parent training that Merry claims to constitute the essential treatment for autism, she opened "Open Door," the first school on the Indian subcontinent exclusively for autistic children. It will remain small (the school has a dozen children aged 3 to 21) in order to act as a laboratory that tests and adapts training methods from programs in different countries to the Indian context. Open Door adheres to a philosophy of accepting the child's behavior and using an individualized, structured program with each child. Part of the school's success is due to the high level of parental and sibling involvement. Open Door tries to prepare students for eventual mainstreaming into "normal" schools, although so far none of those schools will take the children.

Merry trains her teachers on the job, stressing not what, but how to teach children with the disorder. There exists no other course in India for teachers of autists, and her organization is the only source for practical and interactive workshops in handling autistic children, where the most eager students are parents. As people most in contact with the disorder, they make natural teachers for their children, and because of the extreme dearth of information available in India, they desperately devour all information. Many of them arrive at Action for Autism after a futile search for books or resources about autism. Even those who have managed to access the information available abroad find that much of it is irrelevant to their Indian context.

Merry's home city, and organization's hub, is New Delhi and the need for similar centers in other parts of the region becomes increasingly obvious. To bridge the transition from a single center to multiple satellites, Merry counsels families and raises public awareness as she travels through South Asia. She foresees that growing parent awareness and interest will lead to additional centers that provide services similar to those in the pilot program. In fact, a family in South India has already expressed interest in initiating such a satellite center. Because interest is growing fast, AFA has begun the Autism Network journal to bridge the cultural gap between India and the rest of the world and bring parents of different backgrounds together to share their experiences and information on education, therapy, and care. It reaches about 700 professionals and parents worldwide.

Other tools, including a comprehensive Web site, a Delhi-based library, and an information service spread information and awareness of autism to the medical world, disability specialists, and the media, as well as to parents and educators. AFA is producing a series of films on children with autism for India's national TV network. Merry also organized a jam session with a contemporary fusion band - her form of creative therapy for autistic children and their parents! A newly launched public awareness campaign will raise the figures on the number of children receiving early accurate diagnosis of autism.

AFA has been lobbying hard to achieve vital recognition of autism by the government and in 1996 led a delegation of parents of autistic children from throughout India to speak out for inclusion of autism in the National Disability Bill. The Ministry of Welfare has recognized the disability, and in 1998 India's Prime Minister declared that the government wants to expedite the passing of "the National Trust Bill for mental retardation, cerebral palsy, and autism." Putting autism in the same category as retardation and cerebral palsy is a victory for AFA, even if the National Trust Bill, which guarantees service delivery for the disabled, is not passed quickly.




THE PERSON

Merry was born in 1952 in the Indian city of Allahabad. Always an active student who stood up against injustice, she completed her formal education in Calcutta. After marrying, she gave birth in 1981 to a son, Neeraj, who exhibited "violent" and odd behavior. In one premier disability organization after another, doctors misdiagnosed her son until he was four years old, and even then Merry could not find an appropriate program to help him and the rest of the family. Merry remembers one residential school: "Every morning with Neeraj I joined other mothers and their children in a class which had a 'master' wielding a stick. Like much of special ed in India even now, they were big on aversives. They were very nice people but really knew nothing about autism." Neeraj was an excited extrovert, "not the monster who had to be tied to chairs because he did not react to treatment."

However, Merry worked one-on-one with her son, using "maternal instinct and sheer good luck" to encourage positive changes. When he was six, she moved him into a school for the mentally retarded, a shift that brought on a major decline in Neeraj's behavior. By the time he was eleven years old, "life did not seem to have any sense in living." Merry was convinced that Neeraj needed a separate set of communication and behavioral supports.

In the United States Merry participated in a controversial course for parents of autists, which made her view autism and Neeraj in a radically new way. She found great relief in learning that his off-putting behavior was not an intentional rejection of his parents but rather, a symptom of his confusion about how to react to others. From this time onwards, Merry began to ignore her son's negative actions and applaud good behavior.

Returning to India and driven by Neeraj's progress, Merry began writing articles on autism for the general media and counseled a few families in similar situations. She began to teach Neeraj at home and soon another child with autism had joined the classes. Not long after, a college student expressed interest in working with Merry and her students. The Open Door school and Action for Autism were born.