https://csim.in/conversations/CSIM_Conversations_June%202010.pdf

Six-year-old Steven was playing with his football and enjoying the bouncing noise. His sister Natalie, four, drew his attention to the sweets that she held in her hand. Though hesitant, he wanted a share.

“My son Steven is autistic,” said his mother Sudha. “He has been a student at Sankalp for over three years. I never knew that he had a problem until my daughter grew up. His development milestones were right and, in fact, a week ahead. He was always attracted towards colors, and started to walk even before he was one.  It was only the physical milestones that I could see.” 

Steven is one of the 150 children who attend Sankalp – The Learning Center, an exclusive school in Chennai where autistic children are trained to express their needs and desires like any other child. 

Action for Autism India, a non-profit organization, states that one in every 250 persons in India is affected by autism, and there are over 40 lakh autistic persons in India. But, there are only 46 special schools in India – 3 of which are in Chennai – that are exclusively meant for autistic children.

Steven would not answer when he was called by name and could not speak like other children. When Sudha consulted a pediatrician, she was told that it was normal for a boy to start speaking late. She checked with the doctor again if he was suffering from Attention Deficiency Disorder. The doctor diagnosed him to be normal. 

Steven was later admitted in a nearby play school. Within a week, the teacher asked Sudha to admit her son in a special school as he had difficulty in hearing. Sudha disagreed as she had observed Steven running towards the television set when his favourite programs were on. She shifted him to another play school. Here, the teacher advised her to consult a development psychologist, and carry out a thorough health checkup as she found Steven to be different from other children.

“When my daughter Natalie grew, I observed the difference in Steven. Natalie started speaking even before she was one-year old, and spoke more than her brother. My mother’s friend, a therapist, trained Steven on speech therapy and occupational therapy for over a month,” Sudha said.

Steven was difficult to manage when Sudha was at work. A thorough medical checkup was carried out for Steven, and the results proved that his auditory skills were normal, and his brain responded to sounds even when he was asleep. It was then diagnosed that he was suffering from Autism Spectrum Disorder. The doctor advised occupational therapy and speech therapy along with special education.

“When I first heard about occupational therapy, I thought that it was like physiotherapy where the treatment would be required only for a couple of months. It is only when I went to Sankalp that I understood that the treatment would take a much longer period,” said Sudha. 

Steven underwent occupational therapy in Sankalp for a year before he enrolled in the regular special school in 2008. He was active in sports and enjoyed playing with his classmates.

“I see a lot of improvement in him. Earlier, he would not respond to you when you called him by name. But now, he will look at you when you call, and he is comfortable to be seated amidst strangers,” says Sudha.

Steven had problems associated with sensory integration. Autistic children easily get angered when they hear certain sounds that might appear normal to us. Steven would either overreact to a particular smell or sound or not react at all. If he did not like a particular sound, he would close his ears. He could communicate his likes and dislikes by the way he smelled the food, and detested sticky foods like curd, butter, and cheese.  He could not sit in one place for more than a minute and was not attentive.

Autism is a spectrum where growth cannot be measured on a scale. For autistic children, growth is not steady in all the areas, and in certain areas the growth appears to be above normal. One type of autism is Asperger’s syndrome, where the children are very intelligent. An autistic child can calculate 25 x 30 within a fraction of a second but this does not mean that the child can be admitted in a regular school. The child will have behavioural issues that require attention. The cause for autism is not known. Doctors advise parents not to plan for another child when they already have a child with autism. 

“Thankfully, I realized that Steven had autism only after Natalie was born. It is a blessing to have a daughter who is absolutely normal. All my stress is relieved when I look at her. She is very affectionate towards her brother, and takes care of him well. I have seen people with many more problems than I have. I am thankful that my parents, relatives, and friends are supportive, and have accepted Steven. Life moves on.  God knows that I have the strength to take care of Steven, and so gave him to me,” says Sudha.  

Sudha is a post-graduate in computers and management, and works with the World Bank in Chennai. She wishes to pursue a Masters in Child Psychology so that she can be more receptive not only to her son’s needs but also to other special children.  

Like Sudha, Deepa’s son Vinay also attends Sankalp – The Learning Center.

Unlike many other autistic children, Vinay is cheerful and socializes well. He stopped babbling when he was eight months’ old, and could not converse at all. When he was one-and-a-half, his mother Deepa observed that he had peculiar mannerisms. For instance, Vinay used to scream when he watched cartoons on television, flap his hands repeatedly, and shriek when he saw vehicles with flashlights on the road.

Deepa said: “We first thought that our son had a hearing problem. His behavior was different when compared to other children, and he was not meeting the growth parameters. We consulted Dr. Balasubramaniam, the head of Child Trust Hospital, who suspected Vinay to be affected by autism, and referred us to Dr. Virudhagirinathan for an assessment. I did not know what autism meant at that point in time. I asked my friends to check in Wikipedia, and when I received the reference material for autism, I felt shattered.”

Dr. Virudhagirinathan diagnosed Vinay to have autistic features, and assessed his development and IQ level to fall under mental sub-normal range. Deepa was then referred to Dr. Jayanthini, Consultant Psychiatrist at Best Hospital.

“Dr. Jayanthini was the first person who gave us hope. She told us that although Vinay had fleeting eye contact, he could still sustain a social smile, and this was a positive indicator. She advised me to quit my job at Citicorp and spend time with my son. Vinay was refrained from watching television, and we used only one language to communicate with him. We enrolled him in a play school at T Nagar, and this was an excellent opportunity for him to mingle with other children. He started to speak very slowly, and although hyperactive, he could obey commands and imitate actions,” said Deepa.

Vinay underwent occupational therapy at Sankalp – The Learning Center for six months. He then joined the group therapy  in June 2008.The occupational therapy reduced his hyperactivity. Besides, he was also provided speech therapy.

“When Vinay was four years’ old, he called me ‘Amma’ for the first time. It was a moment of happiness that I will cherish forever,” said Deepa

Vinay’s teachers Kanchana and Priya encouraged Deepa to enroll him in a regular school. Vinay can now write three-letter words and can also write the names of animals, birds, flowers, fruits, and vegetables besides the days of the week and the months. Vinay is also trained to read simple sentences and, although he cannot communicate what happened in the school, he can follow the instructions given by his teacher.

“He is more of a visual learner. Before he could start speaking, we taught him phonetics by downloading software from the internet. Although he cannot list events that happened the previous day, he is aware of his training time. His teachers say that he is the first in his class to stand up and say ‘Snack time’ or ‘Prayer time.’ He has an excellent memory, and can recognize movie names and advertisements on television as well as in the newspaper.”

“I did not plan for another child because I might get to be partial and ignore Vinay. I do not want to take the risk. It took a long time for me to recover from my sadness. Although the unhappiness remains, I take life positively,” said Deepa.

Vinay can access the computer and select the educational programs that are installed.  He was promoted to UKG in Joshua Matriculation School and continues to attend Sankalp – The Learning Center in the afternoon.

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Sulata, a special educator, founded Sankalp Learning School in Chennai along with her friends Lakshmi and Subhashini, in 1999.  A graduate in psychology, Sulata is a  B.Ed in Special Education and has a Diploma in Learning Disability. Lakhsmi is a psychologist and Subhashini manages the school administration.

“We initially focused on helping children with learning disabilities. We started Sankalp Special School, which functioned as a pre-school in the morning and a remedial center in the afternoon. Our first student was three years’ old and was affected with Down’s syndrome. Another student had autism but we were not sure, as there was no method for diagnosis. We consulted with Mythili Chari, a special educator and founder of IRIS, an institute involved in diagnosis and treatment of autism. She conducted training on autism for all of us. Since then, I have been involved in providing training and support for autistic children,” says Sulata.

Sankalp Special School started with 15 children who had learning disabilities. Later, they initiated ‘Sankalp – The Learning Center’ to train children with Autism Spectrum Disorder. Children between 3 ½ and 18 years of age with autism spectrum disorder are provided occupational therapy and sensory integration along with special sducation. The school currently provides education to 150 children.

In the occupational therapy (OT) play group, the child is provided OT through a play-way method, and each group has no more than five children. The primary group children are between 4 and 8 years. They are provided education based on the LKG and UKG syllabus of a regular matriculation or CBSE school. The curriculum is simplified to teach the child in a way he can learn. The intermediate group children are 9 to 11 years’ old, and their curriculum is similar to Grade 1 to 3 in a regular school. The senior grade children belong to 11 to 17 years of age. In 2009, Sankalp – The Learning Center introduced the NIOS (National Institute of Open Schooling) group, where the children appear for the 10th Grade examination.

“Our first child passed the examination last year in all the five subjects, and three children have attempted with a scribe this year. So far, only children who can speak appear for exams. Lifelong training is required for a child with autism. Children of parents who cannot afford the school fees are linked with donors for sponsorship. We seek corporate sponsors to help the parents of autistic children, and reach out to more children who are in need,” said Sulata.

Autism is a neurological disorder, present from birth, which affects the way the brain uses information. The cause is still unknown. It is a lifelong developmental disorder primarily affecting: communication skills, social skills, thought and behaviour, and processing and integrating sensory information