In a first of its kind in the country and only the second such example in the world, Mumbai's Jaslok hospital has conducted deep brain surgery on a 42-year-old autistic patient who was suffering from the same for the past 40 years. This surgery has now brought in new hope for autistic patients all over the world. Pamela Mehra, who travelled all the way from USA is now in a better position with reduced OCD and aggression.

The first such deep brain surgery of nucleus accumbens (NAc) was first done in South Korea and the second such example in Mumbai on March 7, 2017. Mehra was diagnosed with Autism at 3 years of age and over a period of time her social interaction had reduced and her communication with family members was reduced to only sign language and hand actions. Before the surgery, her condition was severe and she suffered from obsessive-compulsive behaviour and aggressive besides autism and epilepsy. Her aggression was not only towards her family but also towards others. She was also obsessed about organising the position of objects and people in the surroundings.

Mehra’s family had consulted many doctors in different hospitals in USA too but unfortunately, no one had the solution. Pamela's sister said, “Both my parents are doctors and so they never gave up hope of treating my sister. My mother has been a huge inspiration to all of this.” After the surgery, Pamela could be seen responding to strangers with a smile and even greeting doctors, which was not the case before.

When the waiter in the hotel did namaste to her, she responded back by namaste, this was the first social interaction that I have noted in Pamela since the age of three years, her sister described, overwhelmed by emotion.

While commenting on the case, Dr. Paresh Doshi, director of Neuro Surgeon, Jaslok Hospital and Research Center who led a team of experts said, “Though we have performed several psychiatric disorder surgeries in the past with good results, Pamela's case was unique as it being on the background of autism. Besides, she also had epilepsy and we had to be careful to ensure a safe surgery. The early response to the stimulations encouraged and gave us confidence that not only her OCD but her autism will also respond to the treatment”

What is Autism?

Autism is a complex developmental disability that typically appears during the first three years of life.

It is a neurobiological disorder that affects the functioning of the brain.

In India, there are more than 4 million (40 Lakh) individuals with autism.

It is estimated that as many as 1/3 of individuals with autism spectrum disorder also have epilepsy. Epilepsy is a brain disorder marked by recurring seizures or convulsions.

The positive sides of the affected had their strengths in numbers, photographic memory arts, music and orientation to perfection.
How to take care of your 'special' child?
Most of the times, children adapt their attitudes and abilities from their families leading to self-determination. Divya Kallianpur, Speech Language Pathologist, Nightingales Home Health Services shares how the following 10 ways will help families to groom their autistic child to be self-determined:

1. EXPLORATION:
Walk the tightrope between protection and independence. Allow your child to explore the world on his own. This may mean biting your lip and watching from the kitchen window when your child first meets the neighbour’s kids, instead of running out to supervise. While there are obvious limits to this, all parents have to “let go” and this is never easy.

2. SELF-EXPRESSION:
Encourage the ability to communicate preferences for clothing, food, activities and even simple tasks as to teach your child how to communicate with a “yes” or “no”. Develop a communication system that is effective for your child and foster consistent use of same communication methods at home, school and in counselling/therapy sessions.

3. SELF-ESTEEM:
Self-worth and self-confidence are critical factors in the development of self-determination. Model your own sense of positive self-esteem to your child. Tell your child that he is important by spending time with him. Again, involve him in family activities and in family decisions.

4. GOAL PROCESS:
Recognise the process of reaching goals, don’t just emphasize outcomes. Children need to learn to work toward goals. For older children, encourage skills like organisation and goal-setting by modeling these behaviors. Make lists or hang a marker board in the laundry room which shows the daily schedule for each family member. Talk about the steps you are going to use to complete a task and involve them in tasks leading to family goals, such as planning for a vacation.

5. INTERACTIONS:
Schedule opportunities for interactions with children of different ages and backgrounds. This could be in day care centers, schools, churches and in the neighbourhood. Start early in finding chances for your son or daughter to participate in activities. Typical peers will serve as models and reflectors, the child with ASD may learn appropriate social interactions and may become more aware of their innate differences

6. GOALS:
Set realistic but ambitious expectations. The adage that our goals should extend just beyond our reach is true here. Take an active role in your child’s educational experience. Be familiar with his or her reading ability and identify books that provide enough challenge to move to the next reading level. Be sure you don’t just force activities which lead to frustration, but don’t assume that all of the progress should occur at school.

7. RESPONSIBILITY:
Allow your child to take responsibility for his own actions, successes and failures! Provide valid reasons for doing things, instead of simply saying, “Because I said so!” Providing explanations provides the opportunity for the child to make an activity his own.

8. CHOICE:
Don’t leave choice-making opportunities to chance. Take every opportunity to allow your child to make choices; what she wears, what is served for dinner, or where the family goes for vacation. And, although this is not always practical or possible, make sure that these opportunities are meaningful! Also, when offering choices, make sure that the child’s decision is honoured. By offering the option of choosing between two good choices (t-shirt or polo, apple or banana, reading or playing a counting game) parents and teachers can foster positive decision-making.

9. CONSTRUCTIVE FEEDBACK:
Provide honest, positive feedback. Focus on the behavior or task that needs to be changed. Encourage the child’s special interests and incorporate those interests as motivators and reinforcements.

10. SELF-CONTROL:
Always demonstrate calmness and an ability to self-manage emotions when dealing with a problem, it will help your child to do the same later on in life. Also, help your child to develop the ability to manage anxiety or anger, particularly in public settings.

“Home is a very important environment in which the child with intellectual disabilities learns to become self-determined. A child who learns from his or her parents that he or she has worth will become a self-determined adult. By being allowed the opportunities to make choices and decisions, to explore and take calculated risks and to learn from experiences of success and failure, your child will develop the abilities and attitudes necessary to reach his or her potential,” said Divya Kallianpur, Speech Language Pathologist, Nightingales Home Health Services.