Address at the Inauguration of Tamana Special School-cum-Research Centre

MISSION WITH NOBILITY

I am delighted to inaugurate the "School of Hope" which is based on the intense need of the parents of the children with autism and severe multiple disabilities. A mother's love for such a child right from conception, pregnancy to birth and growth has transformed into a big mission of making the child to live a near-normal life. This family mission has transformed into a societal action, namely 'Tamana'. My greetings to the children, parents, Principal, teachers, and all the members of the 'Tamana' family. I am happy to note that the School is intending to initiate research in the field of autism which has so far remained a puzzle. I hope that this effort will turn the puzzle into a window through which research can be carried out and will benefit a large spectrum of the society. The research should lead to train the individual and prepare them to become creative citizens. The holistic rehabilitation of these children involves a multi-sectoral approach and creation of a condition in which they can fully realize their potential and live their lives as independently and usefully as possible. I would like to share with you some of my thoughts on this noble human welfare mission of Hope and Happiness.

Autism and Reason for Hope

Autism is a complex developmental disability that typically appears during the first three years of life. The result of a neurological disorder that affects the functioning of the brain, autism impacts the normal development of the brain in the areas of social interaction and communication skills. Children and adults with autism typically have difficulties in verbal and non-verbal communication, social interactions, and leisure or play activities. The treatment is not amenable exclusively through a scientific diagnosis. It has to be through physiological, psychological and neurological integrated care.

Today, a child who receives effective therapy and education has every hope of using his or her unique capacity to learn. Even some who are seriously mentally retarded can often master many self-help skills like cooking, dressing, doing laundry and handling money. For such children, greater independence and self-care may be the primary training goals. Other youngsters may go on to learn basic academic skills, like reading, writing and simple math. Many complete high school. Some may even earn college degrees. Like anyone else, their personal interests provide strong incentives to learn. Clearly, an important factor in developing a child's long-term potential for independence and success is early intervention. The sooner a child begins to receive help, the more opportunity for learning. Furthermore, because a young child's brain is still forming, scientists believe that early intervention gives children the better chance of developing their full potential. Even so, no matter when the child is diagnosed, it is never too late to begin treatment.

Social Skills and Behaviour

Researchers have begun to identify factors that make certain treatment programmes more effective in reducing or reversing the limitations imposed by autism. Treatment programmes that build on the child's interests, offer a predictable schedule, teach tasks as a series of simple steps, actively engage the child's attention in highly structured activities, and provide regular reinforcement of behaviour, seem to produce the greatest pains.

Parent involvement has also emerged as a major factor in treatment success. Parents work with teachers and therapists to identify the behaviours to be changed and the skills to be taught. Recognizing that parents are the child's earliest teachers, more programmes are beginning to train parents to continue the therapy at home. Research is beginning to suggest that mothers and fathers who are trained to work with their child can be as effective as professional teachers and therapists.

Developmental approaches

Professionals have found that many children with autism learn best in an environment that builds on their skills and interests while accommodating their special needs. Programmes employing a developmental approach provide consistency and structure along with appropriate levels of stimulation. For example, a predictable schedule of activities each day helps children with autism plan and organize their experiences. Using a certain area of the classroom for each activity help students know what they are expected to do. For those with sensory problems, activities that sensitize or desensitize the child to certain kinds of stimulation may be especially helpful.

Behaviorist approaches

When people are rewarded for a certain behaviour, they are more likely to repeat or continue that behaviour. Behaviourist training approaches are based on this principle. When children with autism are rewarded each time they attempt or perform a new skill, they are likely to perform it more often. With enough practice, they eventually acquire the skill. For example, a child who is rewarded whenever she looks at the therapist may gradually learn to make eye contact on her own.

Boundaries of Autism

At present, there is no cure for autism. Nor do children outgrow it. But the capacity to learn and develop new skills is within every child. With time, children with autism mature and new strengths emerge. Many children with autism seem to go through developmental spurts between ages 5 and 13. Some spontaneously begin to talk - even if repetitively - around age 5 or later. Some become more sociable or more ready to learn. Over time, and with help, children may learn to play with toys appropriately, function socially, and tolerate mild changes in routine. Some children in treatment programmes lose enough of their most disabling symptoms to function reasonably well in a regular classroom. Some children with autism make truly dramatic strides. Of course, those with normal or near-normal intelligence and those who develop language tend to have the best outcomes. But even children who start off poorly may make impressive progress. For example, one boy, after 9 years in a programme that involved parents as co-therapists, advanced from an IQ of 70 to an IQ of 100 and began to get average grades at a regular school. While it is natural for parents to hope that their child will 'become normal', they should take pride in whatever strides their child does make. Many parents, looking back over the years, find their child has progressed far beyond their initial expectations.

Coping Strategies

I would like to mention a few effective strategies for dealing with stress, especially for parents.

Work as a family - In times of stress, family members tend to take their frustrations out on each other when they most need mutual support. Despite the difficulties in finding child care, parents find that taking breaks without their children helps renew their bonds. The other children also need attention, and need to have a voice in expressing and solving problems.

Keep a sense of humour - Parents find that the ability to laugh and say, "You won't believe what our child has done now!" helps them maintain a healthy sense of perspective.

Notice progress - When it seems that all the help, love and support is going nowhere, it is important to remember that over time, real progress is being made. Families are better able to maintain their hope if they celebrate the small signs of growth and change they see.

Take action - Many parents gain strength working with others on behalf of all children and autism. Working to win additional resources, community programmes or school services helps parents see themselves as important contributors to the well being of others as well as their own child.

Plan ahead - Naturally, most parents would like to be assured about the safety and well being of their offspring even in their absence. Having a plan in place helps relieve some of the worry. Some parents form a contract with a professional guardian, who agrees to look after the interests of the person with autism, such as observing birthdays and arranging for care.

What Hope does Research offer?

Research continues to reveal how the brain - the control center for thought, language, feelings and behaviour carries out its functions. There are new research initiatives in this direction. Today investigators from various scientific disciplines are joining forces to unlock the mysteries of the brain. Perspective gained from research into the genetic, biochemical, physiological, and psychological aspects of autism may provide a more complete view of the disorder. Everyday researchers are learning more about how the brain developes normally and what can go wrong in the process. Already, for example, scientists have discovered evidence suggesting that in autism, brain development slows at some point before week 30 of pregnancy. Scientists now also have tools and techniques that allow them to examine the brain in ways that were unthought of just a few years ago. New imaging techniques that show the living brain in action permit scientists to observe with surprising clarity how the brain changes as an individual performs mental tasks, moves or speaks. Such techniques open windows to the brain, allowing scientists to learn which brain regions are engaged in particular tasks. Ultimately, the results of extensive research programmes should translate into better lives for people with autism. As we get closer to understanding the brain, we approach a day when we may be able to diagnose very young children and provide effective treatment earlier in the child's development.

I am guiding a doctoral research project. The research is to find a software hardware integrated solution to achieve a near normal functioning of the brain of mentally challenged children. When I saw some of the mentally challenged children performing certain activities like singing, painting in Central Institute of Mental Retardation, Thiruvananthapuram, I was convinced that one day convergence of information and communication technology, medical electronics, bio-technology and mathematical simulation can find a solution for their problem. We have been studying the mentally challenged children in various research institutions, homes for mentally retarded and hospitals. We were sure that by transforming the functions of the damaged portion of the brain to the normal portion of the brain by some triggering mechanism, or by implanting a bio chip to carry-out those functions, the retardation process can be arrested and rejuvenation of the damaged cells can take place. The problem is very complex. Can it be solved? The research still continues. We target to achieve a few milestones in this research by 2005. Another research area called stem cell research offers great potential; the research is progressing to revitalize the operation of damage portion of the brain. Medical community will definitely find a good solution soon.

Conclusion

Any disorder in human faculty reduces the self esteem of the individual and increases the dependence on others. Our efforts must be to bring about a sense of equality amongst them through a conducive environment. Equality can be generated by training them to acquire certain skills and engage their minds in productive efforts to enable them to lead a normal life. In this endeavour, the efforts of 'Tamana' is commendable in which the love and compassion of a mother has led to a societal mission, which has now grown into a professional venture. With this professional approach, I am confident; the 'School of Hope' will bring smiles to the children and their parents and light the lamp of happiness in their lives.